Angelman Syndrome, Life as an Angel

2012-01-18T01:04:00.002-06:00

Okay, just time for one more post! I was sifting through old comments and just wanted to tell you all that I am so humbled by each comment! I am reminded now, why I started this blog in the first place. I apologize for not updating as I should these days; life just gets so busy. Please know that I am never to busy to be there for any of you who need me. Please feel free to look us up on FB, its under Life As An Angel. Also you can email me at sfore@centurytel.net I pray that all of you find peace and support. Enjoy your precious babies; God has given you an amazing gift! Good night!

2012-01-18T00:44:00.002-06:00

Well just had a moment and thought I would update. Brady is doing great! Knock on wood, he remains seizure free for now. He is back in school and got new braces for his legs recently. He is doing great with the braces but they will have to be adjusted. His gait is more steady and he seems more confident with his braces. We went back for an EEG in Dec and everything looked really good. Hopefully we can stay on this track and keep him healthy and seizure free for a very long time. He continues to make progress in many areas. We are still working on potty training and self feeding, but it will come in time.
Clinical trials will hopefully begin by the end of the month, but we wont know right away if Brady is going to get in, so please keep him in your prayers. We did learn that trials will start in Tampa Fl, which is great for us, as its within driving distance. For more info about trials visit www.cureangelman.org
We have many Angels who are having seizure difficulties at the moment, so please remember them in your prayers. While I love Brady just as he is, I pray that one day Angelman Syndrome will be a thing of the past and that our children will no longer have to suffer the difficulties that come along with this syndrome.
Anyway, its nearly 1am so I better hit the hay. Hope you all have a blessed day!

2011-12-10T02:32:00.002-06:00

Well we are back!! Lots of exciting things happening here! We have learned that clinical trials for an Angelman Syndrome treatment, will begin the first of next year. We recently had an opportunity to attend the FAST Gala in Chicago and had a blast hanging out with all the other very special parents.
On Sunday we had an opportunity to do an informal Q and A with the researcher and clinical trial director, over this project. We learned a lot of useful information and cannot wait to get started. This treatment has reversed cognitive and motor defects in a mouse model. It has not been tried on humans yet, but they are very hopeful that it will have the same effect in humans. My understanding is that they will be using a daily maintenance drug to replace a protein that is missing in individuals who have AS. No one knows exactly what effect this medication will have, but it is believed to be safe, as it is already being used to treat other disorders.
The trials will be held in Tampa Fl. 24 individuals who have AS will be chosen to participate. Those who will not qualify are the individuals who have intractable epilepsy, are already participating in another clinical trial, and are not between the ages of 4 and 12yrs.
If trials are successful, the medication should be made available to the general public within approximately 5mths. If the trial is not successful, there are compounds that will be explored and a new trial will start sometime after. Our research group, through donations, already has enough money to being a second trial. If you are interested in contributing, please go to www.cureangelman.org and show your support; its a great cause! :)
Anyway, Mr. Brady is doing great! He is living life to its fullest and we couldn't be happier. Of course he continues to keep us on our toes, but we wouldn't have it any other way. Just this morning he woke up before me, and I followed his trail of torn up paper and food, to find him sitting in the utility room with a box of laundry detergent poured in his lap. I guess after he emptied the cabinets and filled himself up on junk food, he decided to do a little laundry :)
I don't complain about the chaos that he brings to my life. I am so happy that he is here with us, and that he is able to do these things. If he is getting into something, that means he is doing well and that he is not non convulsive status.
He goes back to his epileptologist on the 20th for an EEG and an appointment. We have begun to get nervous every time we get an EEG because we never know if were going to be coming home afterward; however, I'm trying to remain positive this time, as he seems to be doing great. We struggled with a hunger strike recently, but once we decreased one of his meds, he began to eat again, so that is another hurdle that we seem to have overcome as of now.
Well its time to sign off for now. Thank you all for your kind words, support, and for following our little bundle of joy. GN all!

2011-11-03T01:22:00.003-05:00

Hello everyone!!!! First let me just apologize for not posting pictures like I promised. For some reason the blog is now allowing me to post....will have to get tech support involved Im afraid.
Anyway, its been an exciting, emotional couple of days here. We have a number of Angels who are sick, suffering from seizures, or have been involved in accidents :( Please keep these little ones and their families in your thoughts and prayers.
As for Mr. Brady, he is doing well. We got all of his med levels back yesterday and one of his med levels (zonegran) was very high, so we began reducing that med this morning. Please help us pray that the reduction does not create a seizure problem and that it helps Brady to be able to eat again.
Another issue that we are having at the moment is that Brady has developed an odd calice on his foot. He walks on the inside of his feet, so we suspect that this is now causing the calice. We go to the ortho doc next week to find out what or if we need to do anything.
Aside from the calice, high med levels, and negative effects of the seizure meds, Brady is doing pretty good. He refuses to eat, but is enjoying lots of calorie filled smoothies. As for the seizures, we have not seen even an absent seizure since his VNS was turned up on October 17th (knock on wood).
Moving on.... all of you Angelman families who are located in MS, LA, AL, and Fl, dont forget about our Magnolia Angel reunion on Nov. 12th in Hurley Ms!! Were going to have food, activities, an amazing slideshow, and lots of Angel chaos :) :) While this is a Magnolia Reunion, we welcome any friends and family who would like to attend. Its going to be a day of fun, so come and join us!!!!
In other news...the long awaited FAST newsletter finally made its way to my email tonight! I skimmed through it several times tonight, but finally had an opportunity to sit down a few minutes ago, and read through, without interruption....all I can say is WOW, the wait was so worth it!!!!!!! It discusses the probability of a cure, clinical trials, and even shares the words of a wise young woman, who suffers from Angelman Syndrome. When asked about how she felt when we spoke of a cure or treatment, she said that she wanted to be free on the outside. Harli is an exceptional young woman who successfully uses a communication device to speak for her. So thank you Ms. Harli for being such a strong voice for all of our Angels!! I pray that one day you and all others affected by Angelman will be free on the inside! As I said, the newsletter was amazing. It spoke of many things, including a section on how Bradys hospitalization affected the Vivint Angelman votes and the overall community. Above that you get to see a beautiful picture of our little Angel. I also found out that clinical trials are going to be help in Florida, so now we just pray that Brady gets in! Anyway go to
Cure Angelman November 2011 Newsletter and read through...you WILL NOT be disappointed!
Its now time to get out of here and work on the Magnolia Memory Lane, slide! Gn all!!!!!!

2011-10-28T01:22:00.002-05:00

Hello All!!!!
Now that life has slowed down a bit, I thought that I should take some time to update our blog. As I read a comment from an Angelman sibling tonight, I was reminded why we started this blog and how important it is that we continue our efforts. I have had so many people contact me to say that Brady's blog has been an inspiration to them. Thank you all for keeping up with us, even if we havent been updating as often as we should. While I know that your have read about the many challenges that Brady and our family experience, I hope that you find comfort in the joy that feels our lives. I hope that those of you who are trying to cope with a new diagnosis, find resources and support that you need. My computer is always open, so please dont hesitate to contact me at anytime!
First I want to take some time to remember the losses in our community. It breaks my heart to say that we have lost a number of Angels throughout the past few months. So please keep all of the families in your thoughts and prayers. Hold those babies tight and enjoy every moment with them!!
Our lives have been crazy in the past few weeks, but we are having a blast! We finally made it to Boston to see Dr. Thibert and he is just as awesome as everyone said he was! He had some great suggestions for us to take back to our docs here. I think that things are going to get even better for our little man in the future.
Brady is doing well, although he had a few slight seizures while we were seeing Dr. T. He turned the VNS up and we are pleased to say that we have not seen any seizures since. Brady done fairly well on the plane right there. My husbands company was generous enough to fly us out on their personal plane, so Brady was very comfortable on the way there. He would not stay in the seatbelt. He spend most of the time laying in the floor and exploring the plane. He really didnt seem to care that we were miles in the air,lol. He even managed to deploy the oxygen masks more than once, so it was a funny site watching my hubby frantically trying to push them back up,lol. After we got to Boston, we were met by two amazing Angelman moms and precious little Caiden. We all hung out and just talked in our hotel room...it was great!!!! We flew home and two days later, headed to Nashville for the big Bella Bash, which was hosted by Regie and Yolanda Hamm....go to the Bella Bash page and check it out!
The Bash was as great a we had hoped it would be. We met some wonderful people that we have talked to for years, but never had an opportunity to meet. The entertainment was great, the company was awesome, and the experience was simply beautiful!! Brady did show out a little before the Bash, but he quickly made friends in the Angel room. He spent the night running back and forth from us to the Angel room. The volunteers that helped with him were lifesavers! Brady danced much of the night away with different people and ended up having such a good time. The day after the Bash,
Regie came and picked several of us parents up and delivered us to the Grand Ole Opry Hotel. There were about 16 of us just hanging out with our Angels and enjoying each others company. Dont know how Regie managed to stay awake to entertain us all day, but so thankful that he managed :)
We are back home now, getting ready to go to Chicago in December. We wont two tickets to the Angelman Gala, YAY!!!!!!!!! We were going to try and drive the 14hrs but we just dont think Brady would do well on the trip, so we opted to let him and his brother stay home with Maw Maw. Will totally miss them, but know were making the right decision. Its going to be a very special Gala this year, as we are nearing clinical trials for a potential Angelman treatment!!!!!! Cant wait to meet everyone who has been involved in this process and to find out more information. The bonus is that we get to meet about 500 people; many are Angelman parents. I wish that I had time to go into detail about all of the amazing things that I have witnessed in our community this year, but I dont think you want to read that long,lol. I will just say that, despite our many challenges this year, it has been a year that I will never forget. We will end it with a bang....in Chicago :)
As for Mr. Brady...he is doing very well, considering what he has been through. He is almost back to being the little mischevious, flirting, little social butterfly that he used to be. He definantely has up's and down's but has more good times than bad. Seizures seem to be under control but he is not eating at all these days. He has lost 5lbs in the past few weeks. we suspect that it is a side effect of one of his seizure meds. We got bloodwork tonight and hope that it will reveal any problems. We have to make the decision whether to stay on the med and not eat, or to come off and risk more seizures...its a tough decision, so please pray that we make the right one. We will just call this a little bump in the road as we have already climbed over the mountain this year. As long as he is here with us, we can face the challenges head-on. We just started special, calorie filled smoothies tonight and I think he is a very happy little boy. Hopefully we can get some meat on those little bones soon.
Well I guess that I should be going, as I have lots of pictures to upload. Keep checking because I probably wont get them all done tonight. Hope you all are doing well!!!!

2011-08-30T14:19:00.002-05:00

Well its been a little while since we updated, so thought we would take a minute to do so. Brady continues to do great, aside from a little tummy troubles for the past few days. We spent Saturday with some great friends, who just happen to also have a child with Angelman Syndrome. Sunday we had a birthday party at the lake, so it was a busy weekend.
Brady is back to his wild,happy little self. He has been breaking things, spilling things, stuffing our shoes full of paper and toys, escaping to the outside of the house, and playing in water every chance he gets. He is back to socializing and making new friends every chance he gets. We really didnt realize how docile he had become before he went into the hospital this last time. I guess that when you are with them all the time and they change so gradually, you just dont notice it as much. While I did sense that something was wrong with him, I didnt realize how unsubtle the changes really were. I can truly say that "he is totally back" and is keeping us on our toes now,lol.
As for our contest with Vivint, they will announce the winner on Sept 6th, but I think we got this ;) Cant wait to be able to move forward with clinical trials for an Angelman treatment!! Big things are going to happen very soon!
We met our new neuro/epileptologist last week... she was very nice. She was pleased with Brady's progress so made no changes to his current treatment. She gave us some tips on how to prevent Brady from slipping back into status, so hopefully this will prevent any future hospital stays/comas.
Lots of exciting things coming up in the next few months!! We fly out to Boston October 17th to meet our new Angelman/Epilepsy specialist, then head to Nashville Oct 20th for the Bella Bash. In Nov we head to Mississippi for an Angelman get together and then we have to start getting ready for our Angelman Walk in Pensacola! Yes guys, we are having an Angelman Syndrome Walk-A-Thon in Pensacola Fl! We are super excited to get this thing started and hope to raise tons of money, so we expect to see all of our friends, family, etc, there May 19th! Cant wait to see old friends and make new ones!
Anyway, time to get my pix uploaded. Will be posted some here shortly! Hope you all have a super duper day!

2011-08-22T00:50:00.002-05:00

Well things are going great here!! brady is back to being his mishevious, naughty little self. He has been emptying to cabinets, dismantling my shoe racks, unloading the dryer, throwing sippy cups out the car window, etc.... Our lives are finally getting back to the chaos that we like to call our normal.
We go to Birmingham to the new epileptologist on Tuesday, this will be our first appt since he was discharged from the hospital. Hoping to get some good news and answers tomorrow.
Anyways, dont forget to vote for Angelman to win the Vivint contest!! We need to this money for Angelman Research and treatment! Good night all!!

2011-08-10T01:58:00.002-05:00

Hey guys! Im proud to report that things have been quiet around the Fore house! Brady continues to recover and is getting better day by day. He did not get to start back to school yet, but will prob be ready in a few weeks. Right now he continues to sleep alot, but is back to smiling, laughing, and getting into mischief when he is awake. Even more good news...we got an appt with an Angelman doc in Boston and will be flying out in October. Hopefully this doc can give us some pointers on how to keep Brady seizure free and out of status. We will also be seeing a new epileptologist in Birmingham. Our hope is that the Boston doc, the Birmingham doc, and our ped can work together to provide an awesome medical team for our sweet Brady.
Anyway, thats all Ive got for now. Dont forget to pray for all of our Angels who are experiencing seizures or other health issues at the moment. Also, please pray for sweet Cooper who is battling a serious illness as well. And......dont forget to VOTE!!!!!!!!! Good night all!

Quick Update

2011-08-03T23:27:00.002-05:00

Brady is doing so great today! We went to his Ped this morning and had a great visit. Brady got lots of hugs, popcicles, and stickers while he was there,lol. He has been full of smiles and flirts today...its so great to have him almost back to his old monkey self :) The appointment went well. The doc says that Brady looks great, especially for what he has been through lately. He said that the little cough is just from the tube and could last for up to three weeks. We got some cream for the rash on his face (from the tube), and with the help from our awesome Ped and his staff, we even managed to get our insurance to pay for namebrand Zonegran. Note to all parents: be careful switching to generic seizure meds. We dont know that the switch caused this, but it is ironic that he began to have problems shortly after we allowed the pharmacy to switch him from namebrand zonegran to generic. Insuurance told us that they would not pay for namebrand unless we tried generic and had a problem....I would consider a drug induced coma a problem!
Anyway, the day was great.We are super excited to be flying to Boston to meet with a specialist. Dr. Thibert is an epilepsy specialist, but has tons of experience with "Angelman Epilepsy". We will also be seeing a new epilepsy specialist in Birmingham. We are nervous about the new changes, but know that it is necessary to be sure that Brady is taken care of.
Well thats about it for me, I am beat. Remember to pray for all those in need tonight...there are so many. Thank you all for the continued support and dont forget to VOTE :)

2011-08-02T01:10:00.005-05:00

I know that some people will not understand why I chose to post these pictures to his blog, but I want you all to see what our precious Angel has gone through just this past month. No person should ever have to go through this, especially when a cure is just around the corner. Please take time to click on the voting link to the right of our page. By voting for FAST to win, you are helping to contribute 1.25 million dollars that will be used for Angelman research. Researchers have already developed a cure for Angelman Syndrome in mice models and with your help, a cure for humans could happen very soon. I am begging, pleading, please go vote; it only takes 30 seconds! Sorry for the order of the pics. Scroll from bottom to top so that you can see just what he went through. Thanks in advance!

2011-08-02T00:56:00.002-05:00

Brady continues to progress. He made his first trip to town today, but tired quickly. His dad had to come by and take him home before I finished shopping. He came home and rested and was being a bit mischevious tonight, so that was nice to see. Still waiting on his records to be released so that we can determine what to do or who to see next. Will try to post more updates. Please keep praying for our sweet man, as its going to be a long recovery process, and an uncertain future. Much love to all who are keeping up with, praying for, and supporting us!

2011-07-29T23:35:00.003-05:00

Well, now that I have some downtime, thought I would post an update about whats been going on here. Its been a wild month. About a month ago, we began to notice that Brady was not acting like himself. He seemed to be dull and showed very little emotion. The plan was to go get an EEG once we returned from a week long vacation. The last day of our vacation, he woke up in a strange daze, which was actually a seizure. He and I left early and headed home, where he began to gag and vomit the whole way home. Within the next few days things progressively got worse.
I called my husband at work on Monday afternoon and said that we had to take Brady to the doc, something just wasnt right. On the way to the doc Brady began to have visible seizures. By the time we got to the doc, he was seizing about every minute to two minutes, sometimes more often. The Ped contacted the neuros office and we all agreed that we would take him by car to the hospital in Pensacola. We drove an hour and a half, with him seizing the whole way. The magnet had no affect on his VNS and diastat did not work. Once we got to the ER, the docs gave meds that did stop the seizures and he was admitted. He seized for nearly 4hrs solid. He stayed in the hospital for about 3 days and appeared to be seizure free.
The next week, he was still acting strangely so we knew that something was not right. I arranged to have an EEG done in Pensacola on Tuesday. After the EEG was done, the doc came in and sat on the EEG bed. We could tell by the look on his face that things were not good. He told us that he "did not have anymore tricks in his bag", he did not know what else to do. Brady was in full blown nonconvulsive status at this point and we have tried nearly all seizure meds, as well as the VNS. As some of you remember, he was placed into a coma and on a vent 2yrs earlier for this same reason.
So the ambulance and firetruck came to the office to transport Brady to Sacred Heart Hospital. They put Brady on the vent and into a Pentobarb coma. They told us that they had arranged for the jet to come from Children's Hospital in Birmingham to pick Brady up and that hopefully the docs there could help us find treatment options.
The jet picked Brady up the next day and we drove 4hrs to be with him at Children's. When he left on the jet, he was out of status; however, when we got there, he was back in status. They began to administer Versed and it seemed to work. The next day Brady went back into status, so they began to administer dilantin, which had no effect.
The next step was to double the versed, which was a massive dose, but it worked. Once he came out of status for an acceptable amount of time, they began to discuss when to remove the vent and bring him out of the coma. The next day when they allowed us in, he had been taken off the vent, but was struggling to breathe. We tried to comfort him, but he was in obvioius respitory distress and no one knew why. We could hear a loud whistling sound when he tried to breathe in and his chest appeared to collapse as he gasped for air. He was visibly fighting, sweating, and his color turned grey. His blood gases were very high, so the docs began to talk about putting him back on the vent. They did have the ENT team come up and look down his throat with a light, to see if they could find the source of his breathing troubles.
The team discovered that not only was Brady's airway very swollen, but that he had granulomas on his vocal chords. He was placed back on the vent and scheduled for surgery the next day. The surgeon said that the granulomas were caused from the tube and that they were def the source of the problem. Not long after surgery, he was taken back off the vent and done great. It didnt take long before he was back to his smiley, flirty little self. We were later transferred to the floor and released a day later; we got home yesterday.
All of the doctors and nurses were amazing throughout this experience. If one thing had been different, I dont know what the outcome would have been. We are truly blessed and humbled to have such an amazing medical team, family, and friends. The support that we have received throughout this 9 days has been amazing! Through God's mercy and grace, and the prayers of so many, we are back home as a family, where we belong. Brady is weak, but getting better and even walking some. Were just taking it day by day. Will post more updates later.
Time to snuggle with my precious boy! Please dont forget to pray for those who are sill suffering tonight. Many Angels are having seizure troubles and there is an amazing family that we met in Children's who continue to battle kidney failure in their precious 2yr old little boy; so keep all of these families in your prayers. Also, DONT FORGET TO CLICK THE LINK TO THE LEFT OF THIS PAGE AND VOTE FOR FAST TO WIN 1.25 MILLION DOLLARS FOR ANGELMAN RESEARCH. We are so close to a cure as we already have a cure for Angelman in a mouse modes; with your help we could be even closer. Good night all!

Vote for FAST!

2011-07-15T00:12:00.002-05:00

I added a new button so that you guys could go and vote for the Foundation for Angelman Syndrome Therapeutics (FAST)to win $1.25 million for Angelman research! We are so close to a cure, this money could be just the push that we need. I hope that you will take 30 seconds out of your day to support our cause. I pray for the day that we never have to fear losing our little man because of seizures. Please help us get there!

Were back!

2011-07-14T02:07:00.002-05:00

Hey guys, sorry for being absent for so long, but we are back now!! Alot has taken place over the past few years... I just graduated last Sunday, so will have more time for updates now. Brady is doing well, despite a recent setback.
He has been acting strangely for more than a week....eye rolling, droopy eyes, being tired, and then obvious seizure activity started. Sunday we were winding up a week long camping trip. He woke me up chewing on a block, drooling, unresponsive, wild eyed, and totally out of it. We knew that it was a seizure so we used his VNS magnet and got him out of the seizure after about 30 minutes. He and I headed home ahead of everyone else, but he started to gag and vomit on the way home.
Once we got here, he seemed to calm down so I put him down for a nap so that he could get some rest. We made an appointment with the neuro for Tuesday, but Monday things progressively got worse. He slept until nearly 1pm that day. When I went in to check on him, he was very dull acting, just didnt seem like himself at all. I had a sinking feeling that something bad was going to happen, so called my hubby at work and told him to come home right away.
We called the ped and explained that we didnt know what was wrong, if it was neurological or if he was just getting sick, but that he needed to be seen right away. Minutes later we headed out to the peds office and while on the way, we saw an obvious seizure. He began to roll his eyes to the left and then his head followed. He limbs became stiff and he was unresponsive. The seizure lasted around a minute and he had stopped when we got to the doc. We signed in and were taken straight back to our doctors personal office, where Brady began to have drop seizures and then more of the seizures that we seen in the car.
He was seizing about every minute to two minutes at this point. The nurse and doc got on the phone with our neuros office and arranged for us to head straight to Pensacola hospital. We drove for an hour and a half with Brady seizing the whole way. Once we got there they took him straight back and started giving him medications to stop the seizures. Around 6pm the meds kicked in and he began to calm down. We stayed in the picu Monday night and all day Tuesday and then were transferred to a regular room that night. We never found out exactly what caused the seizures to breakthrough after more than a year of being seizure free, but did find out that he is not in nonconvulsive status like before. It was a pleasent surprise to have the medications work so effectively and to not have to put him back into a coma and on a vent.
At any rate, we got home on Wed afternoon and things have been calm thus far. We would like to thank to many people that sent up prayers and thoughts for our family during this time. God truly worked a miracle and for that we are so thankful!!!
Its time to hit the hay for now. But I promise to update much sooner than before. Have a blessed night!!

2010-08-16T07:03:00.003-05:00

2010-08-16T06:43:00.004-05:00

Warning: The stories that I am about to present are based on actual events; viewer discretion is advised. . .
This weekend was a wild one in our house. We had pictures Saturday morning and were due at a Birthday party around 2pm that day. I ended up staying home with Brady because he was very tired after pictures and needed a nap.
Anyway, that evening we had a poo-911 in which we had no wetwipes in the house, so we made a quick trip to the store to pick up some. Dad and Peyton went in the store, while I sat in the car with Brady. Naturally, Peyton suckered his dad into buying goodies while at the store.
So we get home, change the diaper, which adds that De La Poo scent to the house. Meanwhile, remember that Peyton picked up goodies at the store. . . So he decides that its time to show me what his goodies are. He lays this foil looking piece of paper on the floor and tells me to "just watch". I'm watching this paper for about 30seconds when I decide to go over and investigate. Peyton drags me back and says "no mom, its going to blow up". He was right, this piece of paper did expand and blow up, right before our eyes. After its done, Peyton then explains that its a "fart bomb"; I am just thrilled to be now adding to the De La Poo scent that already radiates around the room. So I'm thinking, well it wont be so bad, how bad can this thing smell; it was BADDDDDDDD!!! So by now, we have made our way into the kitchen and have started cooking supper. Since the previous scents are so bad, we decide to light a candle, hoping to make the smell go away more quickly. So we place the lit candle on top of the refrigerator, thinking that it would be safe there, since it was out of Brady's reach. Meanwhile, I get out a bag of bread crumbs, which I will be using in my Broccoli Casserole that I am cooking.
Since I didn't want Brady to get the bread crumbs, I placed those on top of the refrigerator as well, then I went about my cooking. In a minute or so, Craig is standing by the sink and starts saying "oh, oh, oh" I'm just looking at him wondering what is going on. I kept asking, "what, what is it, what" and he finally exclaims "fire!" Since I am cooking, I begin looking at the stove-top, at the oven, down the counter-tops, but no fire. I'm still saying "what, where, what are you talking about" when I glance upward and see the fire coming from the top of the refrigerator. Since I am to short to reach, I had to wait for Craig to get water and pour over the flames. Thank goodness it only burned my bread crumbs, a cd, and a couple of papers!
So I begin wiping the brown water from the side of the fridge, while Peyton is standing on the counter, wiping the top of the fridge. We get that mess cleaned up and I go back to cooking. Brady then pours a bag of cheese puffs in the floor, tries with all his might to stick his hands in the boiling water on the stove, and eventually grabs himself a handful of Broccoli Casserole (which has no bread crumbs, because they were burned). I ended up locking the half-door to the boys room and putting them in the room while I finished cooking.
I was exhausted by the time that I fixed plates and sat down at the table for supper, but I had to laugh. Just thinking of the chaos and entertainment that our lives bring, made me smile. "It may be a crazy life, but its my life". . .

2010-08-11T14:03:00.000-05:00

2010-08-11T13:51:00.002-05:00

Well Brady its been a busy week in the Fore house this week. Brady started sleeping in his room Sunday night for the first time in four years, and he is doing great! He sleeps in his bed, next to his brothers bed, and I am getting a full nights rest for the first time in years. Brady also started back to school this week and we are attempting to try full days. So far he is doing really well, but is a bit tired by the end of the day. As for seizures, (knock on wood) Brady is doing great! We started Zonegran at the first part of the year, and it appears to be working.
Things really are going well here atm. Brady is so alert these days, moreso than I have ever seen before. He is following commands, answering yes and no questions appropriately, and surprising us with new skills every day. I'm not sure what the real definition of normal is, but I must say that our lives at this point, are as close to normal as its ever going to get,lol.
On a sad note, we lost a very special Angelman mom this week. I am not sure what the cause of death is, but it was unexpected and sudden. She was a very special person who has helped so many others in her life. So please keep her daughter and family in your prayers, as this is a very difficult time for them.
Just wanted to post a quick update, as I don't do that often these days. Gotta run get the boys at school now. Will post later and hope to have pics; the boys are scheduled for Saturday if the storm holds off.

2010-07-20T21:35:00.003-05:00

Well its been a while folks! Sorry for all the delays, but schoolwork has me bogged down these days. Things are great! Brady is doing very well, no seizures since the first part of the year (knock on wood). We have all enjoyed our summer, but it was to short. Now its time for back to school clothes and supply shopping. I think that the change of scenery will do Brady a lot of good. I see him becoming more bored and more frustrated, the longer that he is home with me. He no longer seems to be enjoying the little peoples toys. We have decided that we will purchase older toys for Christmas, but have no idea what those might be as of yet. So if you have any ideas for an 8yr old, send them to me :)
Anyway, we had some medical issues with a family member and ended up keeping a 3yr old little boy for about two weeks. As you can imagine, it was a wild ride with him, Brady, and Peyton. The house was rarely quiet, nor still. The kids were all still moving when they slept,lol. Brady done pretty good with the little guy, but he was still a bit rough when he tried to play. They both were very jealous of me and fought over who would sit in my lap,lol. Anyway, things are better now and we are getting back to normal.
We went to the neuro and the dentist last week and both visits went very well. We do not have to return to either for six months; no cavities, no seizures :)
Well thats about it for me. Gotta get some much needed rest. Will try to post more, sooner. GN friends!

Brady Birthday shopping and AS Walk

2010-05-21T16:05:00.006-05:00

2010-05-21T15:41:00.002-05:00

Hello! Its been a little while since I posted, so hear goes. . .
Brady is doing well, finally. He has spent the last, nearly two weeks, sick with some kind of infection. He was having major spells of coughing and just a low grade fever on and off. After a week on omnicef, with no improvement, we started a new antibiotic. He is nearly finished with that one and doing lots better. We have been seeing a lot of staring spells/absent seizures, but are hoping that these will get better as he gets over his sickness. He had his first day back at school today and done really well.
As many of you know, we attended the Angelman Syndrome Walk-A-Thon in Nashville this past weekend; it was amazing! I dont think that I have ever seen so many Angels in one place. Words cannot begin to describe the joy that all of these individuals and their families bring to my life. We met so many phenomenal families while we were at the walk. The thing that struck me most was how so many people, from all walks of life, were brought together for the same purpose. When we do these walks, we are not students, homemakers, lawyers, doctors, or singers; we are just people who love our families. We all share many of the same challenges and recognize the same simple joys in life. Anyway, as I said, Nashville was great!! The people in that city are all so warm and friendly, despite everything that they have been through with the floods lately. We are looking forward to next years walk and especially to meeting up with our extended Angelman Family again.
Now for the most important part of my post! ITS BRADY'S BIRTHDAY TODAY!!!!!!!!! Whooo hoooo, my little man is 8yrs old today! I know that some people may not fully understand just what this day means to us, or just how special it really is. At 1am this morning as I worked on my BIO final, I realized that my Brady had been 8yrs old for nearly an hour. I could not help but to reminisce over the last 8yrs of our lives, and think how blessed we are to still have Brady in our lives. So many times,Brady has been in the hospital or in seizure status, and we had to wonder if he would make it through. Last December when he was in the hospital, there was a point when I truly wondered if I would be leaving the hospital without my precious boy. Thanks to God's amazing love and grace, we did bring our sweet boy home. Thanks to God, Brady made it through each and every struggle and is still with us today. I can truly say that Brady's 8th birthday really is a miracle!I pray that we have many more birthdays together and that God continues to lay his hands on our little Angel. Brady Boy, we love you more than words could ever say (sniff, sniff). . .
Anyways, moving past the mushy stuff. I'm off to post pics from the walk, and some videos of Brady birthday shopping. Enjoy :) :)

Brady channel surfing and taking breathing treatment

2010-05-11T20:20:00.002-05:00

2010-05-09T00:44:00.003-05:00

Hey guys!!! Just wanted to post a quick update! I'm feeling so very blessed tonight! I have two of the best boys in the whole world. Peyton has been in our lives for nearly 12 years now and Brady has been in our lives for almost 8 years; time sure does fly!!!
Life has been a journey, to say the least! However, I cannot even describe how blessed I feel to still have both of my sweet Angels in my life. As many of you know, Brady has faced so many medical challenges over the past 8yrs. There have been many times that we honestly did not know if he would survive. By the grace of God, Brady did survive and has gone on to bless our lives for the past 8yrs. I am so thankful for every second that my sweet boys are with us, as there are so many parents that no longer have their children in their lives. I just could not imagine my world without either of my precious boys. So hold your precious children close and enjoy every minute with them, some people do not have that privilege.
Now that Ive got all the mushy stuff out, I will move on to more interesting updates,lol. Brady is doing great! So far, his seizures seem to be under control (knock on wood). He continues to attend school and is doing very well. I kept my baby nieces last week and Brady really behaved very well around them. He even tried to hold the babys bottle in her mouth one time. I had to tak Brady to school around 10am, so loaded him and the girls up in the car and headed that way. I got the girls out, then got Brady out. Since had a carrier in each hand, Brady was unable to hold my hand walking into school; he done so good!! He walked behind me the entire time, just like a big boy. One thing that Brady did do before I took him to school, was to sniff my lips after I had kissed the babies feet,lol lol. Brady associates feet with stink, because of his brothers foot funk,lol. He now is in the habit of touching our feet then smelling his hands, it totally cracks me up,lol.
Anyway moving on. . . were getting ready for our big Angelman Walk-A-Thon next week. Since Alabama no longer has a walk, we will be traveling to Nashville for this one. And yes, we are a bit nervous, as much of Nashville is currently flooded. We did call our hotel and the walk coordinator and it seems that everything is safe for the walk to proceed. Our good friends from Pensacola will be traveling with us, so we are super excited. Cant wait to meet all of the new families this year!!!! Dont worry, you will be sick of looking at pictures when I get back,lol.
Well, gotta go do some more laundry, lots to do before next week. Will post more later.
Happy Mother's Day to all of your super special mommys out there!!!!!!!!!!

2010-04-22T12:31:00.002-05:00

Were back! Its been a little while since we posted, as usual life has been chaotic here. Brady is doing well. We took him back for a followup EEG a few weeks ago. While we were getting him hooked up to the EEG monitor, he went into a full blown tonic clonic seizure; he had been seizure free for two weeks to that point. The doctor came running in and I had to run to the car to get the diastat. Luckily the seizure only lasted about 3-4 minutes, so we did not have to give the diastat. Since he was in the postictal phase (after seizure), the EEG was all out of sorts. We were able to determine that while he had a lot of electrical activity, he was not in status. We changed his meds once again, he is now taking zonegran and depakene, which seem to be working (knock on wood).
We have seen a lot of changes since he started the zonegram. He is much less aggressive with his hair pulling and pinching. He is back to the sweet Brady that always knew he was. Brady has been quite the little monkey lately, getting into everything. He is back to putting things in the toilet, climbing over things, and just getting into everything!! He has been to school every day this week, which is a huge improvement. We are excited to be getting our lives back in order and out of the seizure limbo that they have been in since December. Just praying that things continue to improve and that this is the last of the evil seizures.
As some of you may have noticed, it is fundraising time again. I have posted a new fundraising widget at the right hand side of the page. However there are two, one is from last year and I have no idea how to remove it,lol lol. So just click on the second one and it will take you where you need to go. Our goal is to reach $1000, but we are not doing to good right now. Between life, school, and Brady, I just don't seem to be able to find the time to fundraise like I need to. Anyway if your interested, we would be greatly appreciative of any and all support!
On a sad note, we do have some sick Angels at the moment. Hunter is in the hospital with pneumonia. He has come off of the breathing tube, but is not in the clear yet. Colin has been in the hospital in non-convulsive status, as Brady was in December. Colin was in a coma and on a vent, but is now out of status and off of the vent. Pj is one of our older kiddos. He had back surgery and is now believed to be in non-convulsive status, but his mom is finding it difficult to get the care that he desperately needs, due to having to navigate the adult medicaid system. So please keep our kiddos and their families in your thoughts and prayers. We pray for total healing of Hunter, Colin, and Pj. I also want to send out prayers to sweet little Julie, does not have Angelman Syndrome, but is still a little Angel. She had a rare form of eye cancer and has been having some issues. We pray that her cancer is not back and will never return!!! Please pray that God guides the medical team and helps them to know how to treat these children. We pray for strength, courage, and encouragement for their families.
Will post more updates later.

2010-03-27T23:45:00.002-05:00

Not sure how long it has been since our last post, but wanted to update everyone on what has been happening here. A couple weeks ago, on a Sunday, Brady started having multiple seizures. He had 8 pretty bad seizures on that day. I noticed some bumps in his throat, so called the doc at home. He said since Brady was having so many seizures, to take him to the ER and he would tell the doc there what he wanted done. He also said he would tell the doc to admit Brady. So we went to the ER, but as usual, the ER doc did not follow our docs orders. He done one test, if you could call it that, and said Brady did not have Strep. When I asked what the white bumps in Brady's throat were, the doc said "oh I didnt see those". So we held Brady down and showed the doc what we were seeing. The doc said well it isnt an absess, so he will be fine and he sent us home.
The following day, Brady continued to have seizures. We took him in to see his ped, and they correctly retested for strep, it of course came back positive. While we were in the office, Brady had three seizures. So we went back to the hospital and had more bloodwork, where Brady continued to have seizures. Our ped and neuro put Brady on Diazepam for 3 days, hoping it would stop the seizure activity. Since he was taking Diazepam, we were not allowed to give Diastat as a rescue med, so had no way to stop the seizures at home. While we were trying to eat dinner, Brady had three bad seizures at the table. So I called our ped back and he said that we shouldnt be home with Brady and sent us to the hospital. Brady was on IV antibiotics for 5 days and the physical seizures seemed to subside. They done an EEG Friday morning and said that Brady was having a seizure every 10 seconds, but we were unable to see them. Our neuro was not in, so we decided to come home and wait til Monday to see the neuro and get another EEG.
Monday we went for the EEG at 10am and the tech seemed really nervous, even went up to the third floor to get the doc to look at the EEG while it was in progress. So instead of waiting til our scheduled appt at 3pm, which was with the practitioner, our doc told us to come straight to his office after the EEG. The doc told us that the EEG was not good, but was not as bad as the one that put Brady in the hospital in December. We discussed our options and decided that we wanted to avoid the hospital if possible, so changed to a new med. We have been giving the new med at home and have seen a few seizures this week, but nothing major. We are waiting for the med to get in his system and see what happens.
We go back in two weeks for another EEG and to see the doc. Hopefully the EEG will be better by then, but if it isnt, we will discuss what the next step will be. I will keep you guys posted on what happens.
In the midst of all of this, I had finals the week Brady was in the hospital. The internet was not good, so I had to make frequent trips down to the waiting room, to work on my finals. In the end, I did come out with A's, so I was pleased.
On a good note, we went to our friends wedding today, Brady had a blast! he totally loves being in the room with a bunch of people, he is such a little monkey. He done really well, other than dumping our plate in the middle of the floor :( He and his brother looked so handsome today, I am going to post pics once I am done here.
Anyways, its getting late, and I am drained. Will try to post an update soon. God bless!

2010-03-09T23:08:00.002-06:00

Okay, just let me apologize in advance, for slacking on our posts and for this one being short. Not feeling well tonight, so gotta get to bed early.
Anyway, things are going great. Brady has been seizure free since he started his new med a couple weeks ago. So far, we have seen no negative side effects and he is almost up to full dose now. We have actually seen some improvement in his behaviors, so this med just might turn out to be a good idea.
Brady had a full week of school last week, which he hasn't had in quite some time. Tomorrow will be his third full day this week, so were hoping its another repeat of last week.
Not much else to tell here. Brady has been his typical monkey little self. He stands on and climbs everything these days. His signs are improving. He can now sign bath, cup, hungry, more, and sorry. He is also becoming more verbal lately. He has been saying mama, my mama, bubba, daddy, maw maw, and nana, a lot lately. We've been working with him on other words. It is so interesting to watch him, obviously trying to figure out how to form the words that were trying to get him to say. He stops, moves his mouth, and gets this really intense look on his face. I know that he knows exactly what he wants to say, but just cant figure out how to get it to his lips. As long as the desire is there, I know that his language skills will continue to develop and grow.
Anyway not much else happening. I'm heading off to bed now. Hope everyone has a great night!

2010-02-25T03:38:00.002-06:00

Wish I had better news to report :( Tonight is our second night of seizures with our little guy. We have been weaning Brady off of pheno, that he came home from the hospital on. We knew that this med was not going to be a longterm med for Brady, since his body does not tolerate it well at all. We had hoped to wean him off and have him remain on only one med, but its becoming obvious that this is not a possibility. Last nights seizure started while he was in the bed with his dad, it didnt last long, or we think it didnt anyway (dad was sleeping and woke up to the seizure). Last night the seizure stopped on its own. Tonight I woke up to find Brady seizing, again,cant be sure how long he had been seizing. I used his magnet, used diastat and used the magnet again, but it took about ten minutes for the seizure to stop. It was what we call a "bad boy", a tonic clonic. Brady is very out of it now, not very responsive at all. Please pray that we can find something to work for him, and that he can get past this setback, very soon.
Will post more later.

2010-02-17T00:13:00.002-06:00

Well its been a little while, time for a quick update! Brady is doing well, other than the fact he hasn't slept in quite some time now. He woke up at 1am this past morning, took a two our nap, and has just now gone back to bed, at midnight the next morning. He has been wired, but we are seeing a lot of improvements, since the med reduction. He is down from 12 mls daily, to two mls!
Brady continues to sign, he is desperate for more signs though. If he wants something, but doesn't have a sign, he immediately signs "hungry". We have to brush up on our signs and start working harder with him. His Itouch Ipod should be in soon, were looking so forward to having it. I just hope that he will pick up on using the picture symbols and will be able to use it as his voice.
As for seizures, he is holding his own. We have seen some questionable activity, but nothing to cause alarm. We are just watching him, to see how things progress, hopefully we can have him on, only one med, very soon!
Anyway, thats about it for now. Will post more later!

Update

2010-02-08T15:43:00.004-06:00

Well, its been a little while since we posted, so though that it was time,lol.Things here are teetering between normal chaos, and uncertainty. Brady continues to be a monkey on his good days, but on the bad days, I have to check his cute little head for horns! No really, we are seeing some odd behaviors, and suspect its probably seizure related. He is down from 12mls of phenobarb daily, to 4mls daily; he continues to take the depakene. We felt like decreasing the pheno would cause some unwanted activity, but we have to get him off of this medicine. We will probably be adding another, less potent med once the pheno is gone. Since Brady had gone through so much in the hospital, we had to bring him home on the pheno, and patiently wait til the right time to try and remove it; thank goodness the time has come! The pheno makes him so irritable and aggressive, just as we figured it would. We have only seen two seizures since his hospitalization, and these were very mild seizures thank goodness.
Not sure if I posted since our last EEG, but everything went great! His EEG showed some signs of electrical activity, but only two visible seizures (basically means that he is no longer in status). The doctor was very pleased with Brady's progress. He even made a trip down to the second floor, where we were having the EEG done, to have a look at the EEG while it was in progress. He has been very concerned about Brady, as have we all. We have fired 6 neuros before we finally found one who was capable of showing compassion for our sweet boy. I truly believe that if we had not found our current neuro, there is a good chance Brady would not be with us today. Soooooo, we thank God for looking out for our little guy and giving us the strength and courage to forge ahead.
Anyway enough of my ramblings, now on to comedy hour, hehe. . .
Brady has been having his monkey moments lately. He is picking on signs fairly easy. When I watch him use the signs that he knows, it just shows me how much personality this boy has,lol. Last night, he decided to flip the electric heater over and use it as a stepping stool. I told him "Brady get down", he shook his head "no". I again said in a stern voice "Brady get down!" and again he shook his head "no". So I said "Brady would like to get in trouble", he replies by shaking his head "yes" and giggling. So trying not to bust out laughing I gave him my mean look, then he starts signing "sorry" and climbs down,lol lol. He is such a little stinker!!
So another incident, which is totally my fault, but too funny! We have 5 beautiful little Saint Bernard puppies yesterday, so mom and pups are held up in the guest bathroom. Anyway I took Brady in to see the pups last night and Brady immediately starts signing "hungry/eat". I said "oh no Brady, you cant eat the puppies, you must mean to sign "dog/puppy". Well Brady doesn't skip a beat and starts signing "dog/puppy". After we came back to the den and I started thinking, it hit me that he was wanting to eat the puppies, he was saying that they were eating, and they were!!!!! I did apologize to Brady and explained to him that he had to be patient with his dumb parents, were all hes got,lol lol.
So anyway, this morning I got up before Brady and done about here at home. I always keep my bathroom doors locked, because little stinker will flood the house (we know this from experience). So when I went back in to check Brady, the lights was on, the radio on, dads CPAP machine running full force, but no Brady. The bathroom door was standing wide open and Brady was sitting at the head of the tub, just about to turn the water on. He had unlocked the bathroom door, from the outside, and was going to take a bath! He was just sitting there quiet as a mouse, while I yelled for him. Thank goodness we were able to avert any disasters and he did get a supervised bath. But after he got out and I was getting him ready for school, he did manage to reach over and grab one of his seizure meds, get the childproof cap off and pour a quarter of the medicine out before I could get to him. I think that we are going start hiring Brady out to be a child safety tester for these multi million dollar corps like Fisher price and Gray co :)
Anyway guess that's about it for now. Hope everyone is having a very blessed day. Remember to keep all of our sweet Angels in your thoughts and prayers, as many are suffering from major illness at this time: Taylor and Hunter, sick with pneumonia (getting better), Sean in non convulsive status (getting better, a little Angel in Las Vegas who pulled a tv on his head and had to have surgery on his face, and then sweet Maggie in suspected non convulsive status. Pray for our Angel families who find themselves emotionally drained from dealing with some of the issues that come along with raising these very special children. Lord help us all to remember that so many good times will follow the bad times, we just have to keep the faith; we have to remember that every little smile and giggle we receive from our little ones, gives us the strength and courage to face the bad times.

Update

2010-01-30T00:05:00.002-06:00

Hey guys! Its been a while since our last update, so thought we would post a quick one. Brady is doing well. His seizures have subsided. He had a really good report from his latest EEG and doctors appt. His EEG showed that he is no longer in status, thank God. His sleeping continues to be erratic, but we are dealing. He has some good nights and some bad nights. He managed to go to school almost every day this week, so that is an improvement. Life is slowly getting back to normal, if there is such a thing. Brady has been showing much interest in signing and overall communication. He recently learned the sign for hungry, which he uses, even overuses,lol. He has been signing dog as well. He signs and then looks at his puppy, Bentley.
We are in the process of getting him the new Itouch Ipod with the proloquo2go software, so that he can communicate using the device. We are excited to see how he will do with it. Of course getting insurance to pay for anything is next to impossible, so were going to bite the bullet and do it ourselves.
I am still juggling school, Brady, and everything else in my life, but still managing to keep my 4.0 :) Brady hates when I study and does everything in his power to distract me from it. He has managed to ruin one laptop and one of my text books so far.
He has turned into quite the little monkey, his climbing skills continue to become better as time goes by. He loves to stand up in the center of the coffee tables, climb over the couch, use toys to stand on and climb over things. He keeps us on our toes and busy all the time, but were so happy to have him back.
Anyway, thats about it for now. I'm going to take a few minutes and enjoy my quiet time. Hope everyone has a great, safe, night.
One last note: please say a prayer for our little Angels that are going through seizures issues and sickness at the moment. There have been several who are currently in status, one of which they are considering putting into a coma as they did Brady. We pray that the meds work and that they do not have to go through such a terrible ordeal.
Will post more later!

2010-01-10T02:33:00.002-06:00

Well just thought I would post an update on how things are progressing here.
Brady is doing well, totally back to his bad little self. He has been doing some sign language lately, eating like a little pig, and adjusting to his new meds very well. I cant seem to keep up with him these days, he is a little wild man. He went back to school last week and did seem to do well, but was very tired by the end of the day. Were thinking that we might have to cut his hours back a little. We know that when he does not get his nap out, he is more prone to seizures, so all day might be to much for him. I always say that if Brady is sleeping, its because he needs the rest; waking him up doesn't seem like a smart move.
I am still juggling family life and school, so things remain chaotic around our house. Brady does not like when I am doing my school work on the computer and continuously slams my laptop shut, the little stinker!
Brady is very jealous of mine and his dads time together these days. He thinks its funny to place our hands together and then snatch them apart. He does not want his dad and me to sit next to each other, he always wiggles his way in between.
He is back to his old destructive little tricks, which means "he is back". He threw my new suede boot in his bath water this week, and just tonight poured a full can of pediasure into my laptop; I'm typing on a new one now.
Christmas was good, but Santa stayed way to long,lol. Brady and Peyton got so many new toys, and of course Brady chooses to drag all of them out to the couch and the middle of the room. It was a special Christmas though, we had so much to be thankful for this year. At one point when Brady was in the hospital, we were not sure that he would make it home, let alone for Christmas; thank God for miracles! Brady came home, as well as did his new little cuz, who was born premature.
Anyway, not much happening here. Just thought I would post an update while Brady sleeps and in between schoolwork. Will post more later.

2010-01-03T01:22:00.003-06:00

Well we had a fabulous New Year's Day and night!! Some of our friends from Florida, who have an Angelman child, came to stay the night with us. We all had a blast while they were here, and were sad to see them go. We went out for supper New Year's day, but had to settle on Pizza, as everything else was closed for the day, but we had a great time anyway. We came home,played on the Wii and just hung out together, while the kids played. Were looking forward to having them over again, and hopefully they can stay longer the next time :)
Anyways, Brady is doing great! He has been using signs lately. We've been going over the signs with him, and he has been picking up on them pretty quickly. So far his favorite sign is "hungry", go figure,lol.
If nothing changes, he will get to start back to school next week. I know that he is missing his friends and teachers; I think it will be good for him. He is handling his meds very well, to our surprise. We go back to the doc Jan 19th, not sure if they will do an EEG, but were a little nervous, after last time. I will keep you all posted.
Last but not least, please keep our Angels in your thoughts and prayers. We have many kiddos suffering from seizures these days. Sean, one of our babies, is in the hospital atm. He has been suffering from multiple seizures lately and has been admitted for a 24hr EEG. Please pray that the docs can get a handle on these seizures and that this family can bring their baby boy home very soon.

Update

2009-12-30T23:36:00.002-06:00

Well its been a little while since we updated, so thought I would do so in between coats of paint.
Brady is doing well, 100% recovered for his ordeal a few weeks ago. He has been being a little stinker, but whats new I suppose. He has been very interested in signing lately; he is now signing hungry all the time, he never gets full,lol. We are now working on the sign for sorry and stop, he is doing well, but not quite there yet.
Yesterday Brady woke me up pretending to be "Poocasa", as he was painting my bed and back with poo :( After changing the sheets we decided to head to town, on the way he to no surprise, decided to climb out of his seat belt and try to get up front with me. When he was trying to come through the center of the front seats, he started falling, so naturally I reached to catch him. When I reached to catch him, I looked off of the road for seconds, swerved over and hit a garbage can, and he fell anyway. I was worried that he had really hurt his arm because he was holding it crying. After I pulled over and got in the back seat with him, he started laughing, much to my relief. I then got out to check out the damage to my car, some scratches and big dent in the passenger door. The good thing was that Brady did stay in his seat belt for the rest of the day, it really scared him,lol.
Today has been a good day, but a busy one of course. Brady woke me up this morning, sitting on my back, riding the horsey,lol. He has become quite the early riser these days.
Later on today, Brady decided to pour a gallon of paint down the drain and paint himself, as well as taste of the paint; all while I mopped. He then decided to walk all around the bathroom leaving Brady paint prints everywhere. It has been a wild one, but I wouldn't have it any other way. So thankful to have all four family members home and well.
Were going to be working on getting insurance to pay for a new car seat for him. Meanwhile some very caring people decided to purchase a standard seat for Brady. This seat will hold up to 100lbs, so Brady is well under that mark. But it only holds up to 50" in height, and Brady is already 47". At least this seat will buy us some time while we appeal our insurance for a special seat. Now we just have to purchase Angel guards to go over the seat belt latches and we should be set, I hope.
Well gotta get back to painting while my little monkey is sleeping. Will post more later. Hope everyone has a fabulous New Year!!!

Mountain Vacation Nov 2009

2009-12-15T01:46:00.003-06:00

Full update on Brady.

2009-12-12T00:34:00.002-06:00

Well I had a free minute and thought I would post a full update on what has been happening here over the past few months, but mostly this past two weeks. Brady started having seizures again back in September. The seizures were non convulsive and unlike any that we had seen previously. He did have one case of convulsive status, which was stopped with diastat. We have changed his meds around many times since then, and thought that we might be getting a handle on the seizures.
I contacted our doc recently and requested an EEG, since it had been a while since Brady had one. We took him in for the EEG, Monday before last. We came home, figuring that it had some abnormalities, but were in no way prepared for what would happen the next day.
Tuesday rolled around and while we were out, the doctors office called, but were closed by the time we got in. I was concerned that there were problems with the EEG, so emailed the neuro. While I was waiting to hear back, I got a call from my sister n law, who works with my hubby. She said that our doc had called an left a message on the wrong voice mail, her voice mail. It was only to confirm whether or not we wanted to cancel an appointment.
Shortly after I spoke to her, our neuro called us here at home. He had gotten my email and gone to look at Brady's EEG. He was nearly at a loss for words when he started talking to me. He said "Stephanie, its bad, really bad". He explained that most patients with EEG's like Brady's, were never sent home, but straight to the hospital. He told me that Brady was in non convulsive status,which meant that, although Brady appeared mostly normal, his brain was seizing non stop, around the clock. He said to let him make some phone calls and call me back. Within minutes he called back to tell me that he everyone at the hospital in Pensacola on alert, to be waiting for us and to head to the hospital ASAP.
So, we packed up and headed to Florida, again, not being prepared for what would happen. We thought that Brady would probably get some meds in the ER and be sent back home, but we were wrong. They gave Brady the meds and an EEG, which seemed to calm down a bit, then sent us up to a regular room for the night. The following morning, they done another EEG and things turned to chaos after that.
They transferred us to the Pediatric Intensive Care Unit and started Brady on the meds from the night before, plus a new one. He spent the night on these meds, but the EEG had no improved by the next morning. They decided that it was time to increase the meds, which would put him in a coma, and would require him to be on a vent. We waited outside for them to get him hooked up to the vent, but again, were not prepared for what we would see when we came back in the room. Our little angel had a vent breathing for him, feeding tube, cath, and EEG wires coming from his head. At one point there were 5 IV pumps hooked up to him. They nicked his kidney when putting in the cath, so his bag was filled with blood. After a while he started to swell, it did not even look like Brady at one point. He had to be suctioned frequently because they found that he had pneumonia. We struggled for several days with his O2 stats dropping and all of the fluid in his lungs.
After a while, the EEG began to look better, and they decided that it was time to wake him up and get him off of the vent, which was music to our ears; it could not happen soon enough. They reduced the meds and removed the vent, but left the cath and feeding tube. He slowly woke up and began to cough, gag actually. As I was talking to him, I noticed a tube in the back of his throat, asked was that supposed to be there. He had actually gagged so hard that he coughed up the other end of his feeding tube, so it had to be removed.
Even after Brady woke up, he was very weak and could not lift his head. He had not been able to lift his head from the time he went into the hospital, due to all the meds. We doubted our decision to have put him through all this, as he went into the hospital walking and laughing.
We finally got moved to a regular room on Tuesday night, after a full week in the PICU, and by Wed were released to go home. We were thrilled to be heading home, but terrified that it might be to soon. We rode the wheelchair out to the car, and I had to lay down in the backseat with Brady the whole way home, because he was just to weak to sit up. It has been a slow process, but Brady is getting back to himself now.
He has held his sippy cup today, held his head up, and even took a couple of steps by himself. We went back to the doc today, and the pneumonia is much better, but he has a yeast infection from all of the antibiotics.
At this point, yeast seems very minor, compared to everything else that our little guy has been through. We are just so thankful to have our little guy home. God has answered the many prayers that have gone up for our little man. I told Craig that God had a busy week, because there were so major prayers heading his way during all of this,lol.
Everyone has been so kind throughout this past week, I cant even find the words to say how much we appreciate all of the cards, prayers, thoughts, phone calls, etc. It has been an emotional roller coaster, to say the least.
Anyway, now that Ive written you guys a book, I am going to sign off, but not before I give a shout out to our two favorite PICU nurses, Christina and Summer, and of course our wonderful Neuro Dr. Suhrbier!!! Thank you guys for taking such good care of our little Angel.

Were back!!

2009-12-07T17:54:00.002-06:00

Well, did you guys miss us?!? We are finally back. We had some security problems with our blog and was unable to log on, since July, but we are back now, with tons of updates.
At the moment, we are sitting in Brady's hospital room, exhausted and sleep deprived; so this will be a short update.
Brady went into non convulsive status, but we didn't find out until Tuesday of last week. We came into the hospital at 10pm that night and have been here ever since. It has been a roller coaster ride this week, but we think things are looking up. Brady has been on a ventilator, and in a drug induced coma, but is now off and awake. They woke him up yesterday, and he has just in the last 5 minutes, come off of oxygen. He coughed up his feeding tube last night, so all that is left is the catheter and IV's. He is not very alert right now, as the meds are still keeping him very sedated. Hopefully we will be sent to the floor soon, were in the PICU now. Our favorite nurses are leaving tonight and wont be back for a while, so were hoping to move out where both Craig and I can stay in the room with Brady. Craig is sleeping at the Ronald McDonald house, and I am sleeping on a little couch in Brady's room.
Anyway, were waiting now to here back from the latest EEG, to see how bad the seizures are now, hopefully they wont be to bad. He has had several EEGs, and one continuous while he was on the vent, and they continue to improve.
Anyway, I am exhausted, and its almost time for us to get kicked out, so I will post a better, more detailed update later.

2009-07-02T00:56:00.002-05:00

Well guys, its been an eventful week here, to say the least! I officially started school this week, have been confused to no end and working my butt off, but I think I'm getting the hang of it (fingers crossed).
I took Brady to the doc yesterday, he had a blast, as usual,lol. I had to take him to the back,out of the waiting room, he was trying to steal some poor kids sippy cup. So I took him to the back, and tried to give him a glass of water, but he remembered where they kept the Popsicle's and would have no part in that nasty water :) He suckered them out of two Popsicle's and a roll of stickers, he's one persuasive little dude :) But he decided that the Popsicle's might not be as good as they looked, two brain freezes later,lol. He of course, had the run of the office and was behind the reception desk, playing with all the ladies there. He really wanted to peek in all the rooms to see how everyone else was doing, but I strongly suggested that he not do that. I took him back into his room several times, where he would turn the water on, attempt to get in the trash and flip the lights on and off, eventually escaping back to the hall. We did get a good report though. His height was well above average, but his weight was still a little below on the charts, at 42lbs. The doc prescribed a new sleeping med, Trazadone, but since he has slept the last two nights, we haven't had to tried it out yet. On the way out the door, we had to walk behind a row of chairs, where there was this poor, unsuspecting lady sitting. I walked a little ahead of Brady, to get the door, but when I turned around, Brady had fallen behind. He had a death grip on this poor ladys hair and was looking her eye to eye. She looked a little ticked at first, but after I apologized and managed the prize Brady's hands out her hair, she said it was ok,lol.
So anyways nothing big happened in between that time and last night.
But oh, did we have a crazy, manic chaotic morning!!! I woke up quickly, realizing that it was 8 minutes after the time that our respite worker was supposed to be here, and that Brady was MIA. Some time this morning, he snuck out of my bed and disappeared. I quickly jumped up, thinking the bathroom door was locked, so he couldn't be in there. I ran to the den, where I realised that he had opened the utility room door, gone through there, and opened the other door to the bathroom. Apparently his dad forgot to lock that one this morning. Meanwhile, as I'm running through the den, someone is banging on the door, its the respite worker. But I'm so concerned that Brady may be in the tub, drowning, making a mess, just not knowing what to expect, that I just let he keep knocking and ran right past the door. Oh the site, that I found when I got to that bathroom, was almost indescribable!!!! Here was Brady, standing in the middle of my garden tub, water still running, surrounded by containers, shampoo bottles, 2 full rolls of toilet paper, some shirts and about a thousand other bathroom items, all floating next to him. The water was looked like one of those fancy pools, where it just drains over the sides, but it was nearly that relaxing or pleasant....... I quickly dragged Brady out, who still had his totally drenched, falling apart diaper on, and turned the water off. I must have been standing in at least 2 inches of water at this point. I never said a word, just dragged him to the den, opened the door to the respite worker and said "take him". She stayed back here and changed his diaper, while I assessed the damage. The water of course filled the bathroom floor and everything in it, it seeped under the walls, into my bedroom and the front entrance. Everything was flooded!!! I tried the mop, but it broke, tried the steamvac, but it wouldn't work for some reason. There were a few towels in the dirty clothes, so I used those to clean some of it up. But for the most part, it just ran back out the walls I guess. The fans dried some of it up, but the bathroom floor is still pretty damp. I came back to the den, where the respite worker asked if I had another broom, apparently the broom broke while she was sweeping :0 All I could think was what in the world, dare I ask whats going to break next!!! Brady was on it the rest of the morning. He was doing his very best to break everything he could get his hands on. At one point, I literally started checking this little Angel for horns! He has already broke one of my fans, and started working on the new one today. He just loves to flip them over, doesn't get any funnier than that. He was throwing the remotes down, knocking the batteries out, ripping up pieces of paper in the floor, and go my school notebook, totally ripped the binding out, flinging pages everywhere.
Anyways, we survived, thank goodness. I never got upset, except when I didn't know where he was, or if he was ok. After I found that out, everything else seemed pretty trivial. But I do have to admit, breaking a sweat during all of this,lol.
Well, Brady is now sleeping, so I'm gonna head that way. Just thought you guys might enjoy another Brady adventure. When your feeling stressed today, just think of Brady, standing in the middle of all that water, splashing and having a grand ole time :) Night all..............

2009-06-28T23:01:00.003-05:00

Well guys, in between not sleeping, we managed to slip off to the beach today. Brady stay up all night Friday night, slept a little during the day Saturday and was up Saturday night. I stayed up all night Saturday night, went to the beach today and didn't get a nap til about 5pm. So were pretty much all tired out and all sunburned, except for Brady. We knew to load him up with sunscreen. Anyway, Brady had gotten scared on our last trip. The boats were making lots of waves, he refused to go back in the water. So we were not sure how he would do at the beach today. It didn't take him long to get over that fear, he had a blast. He loved surfing the waves, they were huge. He had sand in places we didn't know he had though. He kept dipping his honey buns and chips in the sand,ick....... But the birds really enjoyed the sandwich that Brady pinched into pieces and didn't eat.
Brady is doing great! He stole a bag of m&m's last night poured them into his bowl, without spilling even one. He is so cute, walking around, holding a bowl or cup out , wanting us to add food. Everything has to go into a bowl or cup. He has also learned to dip his fries in ketchup. If we don't give him ketchup, he will hold the fries out at us, and fuss, till he gets some,lol.
Anyways, my keyboard is messed up, so its hard to type, and im wore out, so gonna get off. Will post more later.

2009-06-23T05:37:00.002-05:00

Hello my friends! Not much to post about this morning, but since I'm still up, why not post something :)
Things are going great here. The Big Happy Tent project seems to be "taking flight". Were really excited about this project and hope it does as well, if not better than anyone expects. But even more, we hope that this project will be able to provide some well deserving families, a stress free, fun filled, adventure. If you want to check it out, visit the Big Happy Tent link, listed on our page, or go to www.bighappytent.org
As for things here, were still not sleeping. Brady is really partying these days. He is averaging about 2hrs of sleep, per day, no nighttime sleep. He slept about an hour during the night, so maybe we can squeeze at least one more hour of sleep out of him today.
He really is doing well, despite the not sleeping. We seem to have good seizure control at the moment, we are so thankful for this. I think that we might actually be getting back to some sort of normalcy in our lives. I know that putting the word "normal", next to "our life", may make some of you think that we have finally flipped,lol. But, we are just enjoying ourselves, so much, these days. When Brady was having seizures all the time, we were constantly on guard, it felt almost, as if the seizures were our jail cell. Everything about our lives revolved around, when or if Brady was going to have a major seizure. Now, we are feeling much more comfortable letting Brady stay with his Maw Maw over night, or just for an hour. Were even considering having a night of camping, just for mommy and daddy, but that remains to be seen. We now can go riding the boats up river, and not have to be stressing over whether or not Brady is going to have a seizure, this has happened to us before, not a pleasant experience. Now, when we roll into a new town, we don't immediately start looking for the nearest hospital, just in case Brady ends up in status. Don't get me wrong, we carry our magnet and diastat every where we go, but just as a precaution, not that were expecting to have to use it. So yeah, life for our family, has changed tremendously over this past year.
Brady continues to develop new skills, and abilities on a daily basis. He has gotten so good about answering yes or no questions. He will stand in front of me, fussing, obviously trying to tell me something. I can start asking him questions, like "do you want a cup", "are you hungry", "do you want to outside",etc. He will answer appropriately every time. If it isn't a yes or no question, he will take me by the hand, and lead me to whatever it is that he wants.
I have been letting the leash out more and more these days. For the last two days, we have let Brady, walk with his brother, up to Maw Maw's house (shes our neighbor). It is the cutest thing, seeing both boys trotting up the driveway, heading to Maw Maw's. I always call ahead and let her know to be watching for them. It just cracks her up, to see Brady toddling up the drive way, looking so independent, and feeling so accomplished :) I think that allowing him more Independence, has been a huge step for me, its so stinkin hard!! But I have always said, that you can make a typical child, have special needs, if you smother them, and don't allow them experience new things in life. We have to learn to let the leash out, and let them make mistakes, this is how they learn. We have to allow them to learn, that if they fall, to get back up, brush themselves off and keep going.
I am looking forward to, and am excited, to see what the future holds for Brady, the possibilities are endless. Life is just one big adventure :)
Well, Brady is finally sleeping here next to me, but not sure for how long. So I'm gonna head on over to sleep town with him. If your reading all the way to this point, you have suffered through my ramblings, so thanks! Will post more later. Have a great day!

Cool Story/New link!

2009-06-21T03:54:00.005-05:00

Hello everyone! Just wanted to tell you a cool story about something that has been happening, since our last camping trip. When we arrived at the park, it was raining, and rained on and off for the first two days. But, as you could see by the last pictures that I posted, we had a blast on this trip! It wasn't long after the rain stopped and we were able to go outside, that we noticed a young family at a campsite near us, having the time of their lives. Two young children, were laughing and playing, with their mom and dad. This little girl had the prettiest, curly, red hair. I could hear this little girl and her younger brother giggling, a mile away. My first thought was, how cool it is, to see such a loving, devoted young family and to see these young children, having such a good time.
Anyway, it was really wet outside, and of course water puddles everywhere. Anyone who knows Brady, knows that he isn't going to let an opportunity like this pass. So he quickly ran over and sat down in the water puddles draining down the sidewalk. Of course, I didn't dare try to stop or prevent him from doing this, I knew that it would be useless to try and keep this kid from water.
I was taking pictures of him, playing in the puddles, when this young family approached us. The kids quickly joined in with Brady, and then Peyton joined them as well. I had the opportunity to chat with their parents, while all the kids played, they were very interesting people. I just could not believe, how much energy this couple had, if only I had half of their energy,lol. Their children, have equally, if not more, energy. As I talked with the parents, they told us that their names were Marcel(dad), Leigh(mom), Nina(big sis) & Waylon(little bro). They told us about all their travels in the last days, they had been to several different states, visiting family. Now, I would have been a nervous wreck, if I had traveled with two young children, all those miles. But these guys, seemed to take it all in stride and enjoy every minute. They had, at the spur of the moment, decided to swing by this campground that we happened to be at, and stay the night. I don't think that any of them had ever been camping before,lol. As we all watched Brady in the water, Marcel, Leigh, Nina and Waylon seemed a little curious about Brady, since he was not talking and obviously acted different than your typical child. I explained to them that he had Angelman Syndrome, what it was, and a little about how it affected him. They seemed very interested in learning more about Angelman Syndrome. I told them about his blog, that they should look it up sometime and that they could contact us on through there. We agreed, that we would like to stay in touch each other, after we all got home. We had planned to get together later that night and watch a movie, but things were so busy, and we were all wiped out, so we didn't get the chance.
They all left, the next morning, so we didn't get a lot of time together. I was hoping to hear from them once they were back in Texas, but to be honest, really didn't expect to.
It wasn't long after we got home, that we found a comment on Brady's blog. It was Marcel and his family. They had made it home to Texas and were trying to get in contact with us. I emailed them back, but the email was bounced back to me. I wasn't sure how to contact them, until they actually emailed me. It was really cute, they were not sure they were even emailing the right people, but gave it a shot anyway,lol.
As the weeks after our trip progressed, I have spoken with them several times. This truly is an amazing family. They have started a project called, "Big Happy Tent". This is going to be a non profit organization, that takes Angleman Families camping. Its so ironic, that they just happened to be at this campground, that this was their first time camping and that we were total strangers. They had never even heard about Angelman Syndrome before this day. But yet they were so inspired and so willing to try and help Angelman Families. As much as they were inspired by our family, I think they have been an even bigger inspiration for ours. This project is still a work in progress, but quickly coming together. I have posted the "Big Happy Tent" link, in the right hand column, under "Angelman Links". Please take the time to visit this website, its going to be amazing. Marcel, Leigh, Nina and Waylon are working very hard, to make this dream a reality. They need our support to make it happen.
I think that, so many times, we parents, especially those of who are special needs parents, forget or just don't have the time or the financial means, to sit back, look around and just enjoy life. This is going to be a great opportunity for families, to just get away from it all, if only for a little while. I cant speak for everyone, but I know that our family loves to "just get away from it all". I think that camping is one of the things that helps keep us sane and grounded.
Anyways, you guys check out The Big Happy Tent link! If you have any questions, please feel free to contact me. I will keep you posted on this project.You guys can help, by passing this link to everyone in your address book :) Last but not least, we want to send a big THANK YOU, to Marcel, Leigh, Nina and Waylon, you guys rock! Will post more later............

2009-06-17T22:05:00.003-05:00

Hey guys! Sorry I havent been posting much lately, life has been chaotic, as usual. Things are going great here, just keeping busy this summer. Brady has been doing well, but really bored, since school is out. I can tell that he misses his teachers, and everyone else at school. He will be attending school more this upcoming school year, so that will be nice for me. I just started back to college, for Elementary Education. Hopefully by the time Im done, I can find a position in the Special Ed setting, thats where my heart is. Anyway, while Brady is in school, I will have more time to focus on my studies.
Not much else happening here. Brady doesnt sleep much these days. He is one happy little guy, so that makes the nights pass more quickly. He still continues to move forward developmentally, hes growing up so fast. He has developed a new obsession with hot things, and things that require electricity, not a good thing. He has managed to stick the tip of his finger to the iron and the stove eye. He has managed to stick the tip of his finger in the wall outlet, and tried to get his tongue in it as well. Each and every time, he cried, but went right back to do it again. He is such a determinded, headstrong kid!
On a lighter note, Brady has also developed and obsession with dipping all of his food. He loves to dip his chips in dip, french fries in ketchup, he dips anything and everything,lol. I have to give him a bowl with dip, just so he can dip all his food.
Well, its been a long day today, so Im gonna get off of here, and watch a movie. Will post more, and more often, promise. Have a great week you guys.

Vacation pics....

2009-06-09T00:09:00.005-05:00

Bradys kinder graduation

2009-05-27T09:16:00.007-05:00

2009-05-26T00:03:00.002-05:00

Well we have some exciting news to share with you guys!! Brady has decided that its time for him to potty train. He has been taking his diapers off, when he feels the urge to potty, which, diapers off, with most kids would be a bad thing. But we are so excited to see him recognizing the fact that he has to potty, and not wanting to do it in his pants :) If you had ask me years ago, if I would have a child that had just turned 7yrs old, and would just be beginning the potty training adventures, I would have told you that you were nuts. But yet, here we are, Brady just turned 7 and were starting this his big potty training adventures. We have been taking him to the potty today, every time he takes his diaper off, we have to work on a potty symbol for him though. I think he may have tinkled a couple of times in the potty, but its kinda hard to know for sure. He has had many less wet diapers today, so he must be going in the potty.. He does know what we want him to do there, he tries really hard to potty for us. I have to admit, that the first couple of times were trial and error. I quickly learned that I have to move the garbage can away from his reach, while hes on the potty, or it can get messy quickly. I also learned that I have to take the lid off of the tank and disconnect the chain from the handle, to prevent him from flushing repeatedly. I already knew to remove all toilet paper from his reach, or it would have been in the toilet. The Rifton Potty chair has been a Godsend. It prevents him from being able to jump back up off the potty and keeps him from falling in. He knows that, once he is strapped on, its time to potty, then he gets to stand up and flush. I wont even go into detail about our excited, potty dance that we do after hes all done :) I think that he has decided that mommy must be totally insane by now.... But after, only one full day of potty visits, we just got our first real pee and poo poo in the potty!!!!! I am so totally thrilled! Thrilled to see that the diaper days could be over very, very soon, thrilled to know that the thousands of wetwipes per week and a half,days, are nearly behind us! And, hopefully, this means that our big parties (most of you know what I mean),are a thing of the past. I have to say, that I am very surprised at how well our first real potty day has gone, Brady is doing great! What a way to start off his 7th birthday and our summer vacation. I think its going to be a very exciting summer for us.
As for the rest of the day, its been pretty good. Brady has been a little fussy, but its probably due to his not sleeping these past few days. He has been driving us totally crazy, with all his new, noisy birthday toys. I miss the days when he couldn't flip those little on and off switches on the backs of the noisy toys,lol. He likes to climb right up between us on the couch, when were watching a movie, and play his little guitar and juke box. I'm going to be hearing those tunes in my sleep tonight! No matter how many times I turned it off, or put it on the floor, he always ended up right back between us, playing his music.
Anyways, it looks like the little monkey is getting sleepy, so I better go encourage him to sleep.
Be sure and remember him on Wed, its the big kinder graduation!! Will take lots of pictures......

2009-05-19T23:30:00.002-05:00

Just thought I would post a quick update before bedtime. Brady is doing great, but has been a busy boy today! He started the day out with a bang this morning. He took his pants off and peed on my bed. Naturally my washing machine called it quits today, couldn't be because of having to wash our bed clothes every day from the pee........ Brady got up in a good mood and was ready to go to school.He went and got his shoes and gave them to me, to put them on him. He was such a big boy, and climbed into the van and into his seat, all by himself, which is a huge help for my back. He had a great day at school, he was so glad to be there. He went straight to work when he got to his classroom. We found out today, that he is going to get to graduate kindergarten with the rest of the kids, next Wed. Were so excited about this, it is something that we were never sure he would be able to do. Rest assured, there we be tons of pictures and video taken of this event!
We came in from school and Brady was ready to run. He managed to ruin another roll of toilet paper, by throwing into the bathtub with him. I think he also flushed some unknown object down the toilet, because it wouldn't flush tonight. Thank goodness we keep the plunger on hand, for Brady incidents. I'm not sure what he flushed this time, but it couldn't be the bathtub stopper, since he has already flushed all three of them. The good news is, we did manage to get the toilet unstopped after some minor plunging.
Brady has also resorted back to his stripper days. He has been ripping the tabs off his diapers, taking them off and peeing in the floor. So, since he knows that he has to potty, before he actually goes, I guess this means its time to potty train. Were going to start this summer, and hopefully the school will be able to help us when he starts back next year. Meanwhile, were going to have to buy pullups, with no tabs, and hopefully this will encourage him not to be stripping.
Also, do you guys realise that Brady has a birthday coming up on Thursday?!? It just seems like both boys birthdays come around way to often these days!!
Last but not least, we found out today that Big Brother Peyton, will most likely be getting glasses in June. Apparently they found that he has an astigmatism, just like his dad. We go back June 12th and will probably pick out his glasses at that time. Hes going to be so handsome in his little glasses, however hes not thrilled,lol
Well since this turned out to be a long update, rather than a quick one, guess I better get going. Night guys............

2009-05-18T23:20:00.004-05:00

2009-05-18T23:06:00.003-05:00

Well guys, we made it back! The walk went great, even though Brady was a bit cranky. He had been so overly stimulated from all the activities and had been up early that morning. We took the camper down, early on Friday, and just stayed at a campground close to the walk site. We had my mom and Craig's mom, otherwise known and Nana and Maw Maw, with us. When we first got there, it started storming. We didn't even unhook the camper, we just went inside and waited it out. We tried to turn the tv on, but lightening kept tripping the breakers, and then it started lightly hailing. But we made it through with no major damage.
Brady woke up about 1:30 Saturday morning, climbed down the steps and hopped into bed with Maw Maw. She said he lay down next to her, clapped his hands and said "ok, ok, ok",lol. I think he pretty much slept from then til 5am, when we all got up to get ready to leave.
Friday afternoon and the first part of the night, Maw Maw and Nana pretty much kept the boys at the campground, while Craig and I done walk stuff. We got several phone calls from Peyton, letting us know that Brady was tearing the camper apart,lol. I think that Brady pretty much gave Nana and Maw Maw a run for their money. He eventually found a mud puddle to play in. I think that the grandmothers were so exhausted, the mud puddle was a welcomed site, it gave them a little bit of a break from the wild man. There were chips in the floor and parts a diaper that Brady had torn apart. Brady had bit Nana and got blood and the grandmothers looked as if their hair might have been standing on end, when we got back Friday night,lol. They mentioned that I might fire my babysitters, but I told them heck no, that I didn't fire free babysitters,lol.
As for the walk, it really did go well. I don't think that there were as many people as last year, probably due to the anticipation of bad weather. It was thundering when we woke up Saturday morning, and the weather said there would be thunderstorms. Thank goodness, the weather held out, we had a good time. We had some people there from Texas,and even some from Indiana I believe. We learned a lot from the walk this year, I think that each year, will get better, as we learn more things to do and not to do. I'm already looking forward to next year.
As for Brady, I think he has raised nearly $900 so far. I'm not sure how much our walk raised, or how much the ASF raised all together. But I will let you guys know as soon as I have the numbers.
Thank you all so very much, for supporting our cause. With your help, we get closer and closer to a cure or at least treatment.

2009-05-14T21:10:00.002-05:00

Did you guys see that Brady suprpassed his fundraising goal!!! He is now at $785, whoooo hooooo!!!! We also managed to get nearly all of our refreshments donated for our walk as well. I am so very nervous, but am also so very excited! I just have to say, that all of you have donated, ROCK!!!!!!!!
Anyway, gotta get going here, still have tons of things to get ready, before we leave. Be sure and check back Saturday night/Sunday morning, for pics! I am going to be sure and get tons of pics at the walk.
Wish us luck. Will post more later.

2009-05-12T22:35:00.004-05:00

Well guys, its getting close to walk time!! Hope all of you will come and walk with us, as we walk for a cure! Things seem to be coming together in our planning. I have to say that even though we live in a small town, the people and businesses here are so very generous. So far we have managed to get nearly all of our refreshment items donated. So a big thank you, to all of you who have donated money or items for the walk!! We also managed to get a local business to donate the signs for our walk, so a big thank you, to them as well. For anyone who wants more info about the walk, please feel free to contact me. We really are going to have a blast this year, so come join us!
As for Mr. Brady, he is doing really well, but has been a bit off balance today. He has fallen down a couple of times, and there have been several times that I managed to catch him before he fell. I have been a bit concerned, because he fell yesterday, and hit his backside on the boat trailer hitch. I know that it had to have really hurt, as he cried real tears, which is not normal for him. Today he has a scrape and small bruise. I think that the balance problem, might be from being sore. Hopefully he will be better by tomorrow. He has a big walk coming up this weekend, so we cant have him stumbling around for that :)
He went to school today, his teacher said he done really good. He got to play with several other kinder students during circle time. His teacher said that he interacted really well with them, they all seemed to have a good time playing together. I know many people wont understand our excitement, but it is a big deal for us.
We did start the day off with a bang this morning though! We had a visit from our nurse case manager and the lady in charge of his waiver program. While I was talking to them and signing papers, we noticed Brady playing with something on the bottom of his foot. He kept touching his foot, then smelling of his fingers. We quickly realised that it was poop that was on his foot, and now his hands and legs :( I cleaned him up, and cleaned up the poo foot prints all around the room and went to change his diaper, but it was clean. We finally realised that one of the ladies had stepped in poo in the yard, and tracked it in. Sometime when Brady was playing with and sitting with her, he managed to get it on the bottom of his foot and it just went down hill from there,lol. What a great way to start off the day!
The only other major malfunction that we had was this afternoon, after school. I decided to do some house cleaning, which is extremely hard for me to do, with Brady home. But I was determined to get some things done here, so gave it my best shot. While I was cleaning up Brady's brothers room, Brady sneaked to the kitchen, and poured a whole thing of cooking oil, all in the floor, on the counter and on the stove. Then he decided that he needed to play in, stand in it, and smear it all over the place! I very carefully, took his hand, and walked him back to the bath tub, for the 3rd time today. He was slipping and sliding all over the place on the way,lol. You can just imagine what a mess the cooking oil was to clean up. With my hubbys help, a roll of paper towels, spray bottle of pinesol, a mop, and shimmy cloth later, we did manage to get most of the grease up. We even had to pull the stove out and mop under it! Somewhere in the midst of my cleaning frenzy, I ended up loosing 2 rolls of toilet paper, thanks to Mr. Brady throwing them in the toilet! What is up with his obsession to throw things in the toilet! Oh well, at least I can say that we never get bored here :)
Anyways, that's about it for my day. I am exhausted and looking forward to bed. I pray that Brady stays asleep!!!! Night guys............

2009-05-11T13:40:00.003-05:00

Well, just thought I would post a quick update, since Brady is at school at the moment. We had a great weekend this weekend! Brady has been a bundle of energy and into everything, but he is just so much fun! He really does keep us on our toes :) Brady has now learned to unlatch the screen door, so we had to move the latch up to the top of the door, so he couldn't escape to the outside when we were not looking. I don't think that there is anything this kid cant do. The only thing we can do is put things up out of his reach for now. When he gets taller, I'm not sure what we will do,lol. There is a banister separating his playroom and the living room area here. He learned this weekend, how to move a toy to the banister and climb over! He is just getting way to smart for us.
Brady had a blast yesterday, at our Mother's Day get together, at his Maw Maw's house. He thought that everyone had gathered together, in his honor, or that's how he acted,lol. He went from one person to the other, snorting and blowing them kisses. He even suckered a few people into rocking him for 5 seconds, he wouldn't stay still longer than that :) He is such a little bundle of energy, I do wish he would share some with me. Anyways, he was so tired out from all the excitement, that he fell asleep early last night, and slept until this morning. It was so nice to get a full nights sleep. He is at school now, having the time of his life, I'm sure. He was totally ready for me to leave, he wouldn't even wave bye at me, he was to busy. Its so cute, when we walk into school, the kinder kids are outside having snack. They all start yelling "look, theres Brady". Everyone has to stop and wave at him, and of course Brady just eats up the attention hes getting.
One more cute thing before I go. Peyton or better known to some of you as Big Bubba, has been taking up so much time with Brady these days. Peyton has been taking Brady outside to play on the trampoline with him. They get under the sprinkler and splash around in the kiddie pool together. My Peyton is just growing up before my eyes. I cant believe that he will be 11yrs old this year! I am so glad to see him taking up so much time with Brady, and Brady just eats it up. He thinks that his brother can do no wrong, he really looks up to him. Of course they do still fuss like brothers, but there is a bond between the two of them, that most people just cant understand. When Peyton goes to bed at night, he will say "love you mommy", then he says to Brady, "love you twit",lol lol. I know hes calling him a twit, but its so darn sweet that hes saying that he loves him,lol. When Brady wakes up in the morning, the first thing he says is "where Bubba", Peyton thinks that's so cool. I just couldn't be any prouder of either of my precious boys, they are such amazing little boys.
Well guess, I better get going here. Will have to get the boys at school in a little bit.

2009-05-04T02:01:00.002-05:00

Brady giving the pup kisses, goofing off, and smelling of his dirty foot :)

2009-05-04T00:40:00.002-05:00

Well, its been a busy weekend, but has been a good one. Brady has played outside all weekend, while his dad and myself worked in the yards. Even with a gallon of bug spray on our little guy, the bugs just cant get enough of him. So he goes back to school tomorrow with multiple bug bites, poor little man. He also got a little sunburned, despite the sunscreen, but he doesn't seem to be bothered. I guess between playing in the pool, playing on a wet trampoline and his brother spraying him down with the waterhose, the bug spray and sunscreen kept getting washed off. Its amazing how the outside just doesn't agree with Brady, but he loves it so much.
Brady has been sleeping much better lately, but seems to be breaking his sleeping routine tonight, naturally, since he has school tomorrow. We have our puppy inside tonight, and Brady just cant seem to get enough kisses from her. Everytime I look around, he has his tongue out licking the poor dog,lol. He even got really jealous that the pup was sitting between me and his dad :)
Anyways, guess I better see if this little monkey will go to sleep, if we plan to make it to school tomorrow. Will post more later.

2009-04-30T00:07:00.002-05:00

Just thought I would post a quick update before we head to bed. Brady went to sleep sometime after 3am yesterday morning, got back up about 9am and was up for the day. He went to school and is now asleep! He had a great day at school, he painted, played with playdough, done his lesson, circle time with the other kinder kids, and even sat through a complete story in the library! I am just amazed at how well he is doing these days. There is no that he would have had the focus and control, 6mths ago, to sit through an entire story! The teacher was really proud of him and so are we!!
Tonight, we were sitting in the yard with him, when I heard to sweetest sound coming from him. He was sitting in a chair, like a big boy, kicking his legs, and I would have swore that he was singing!!!!!!!!!!! I asked his dad did he hear the same thing I was hearing and he said he did. I honestly don't think I have ever heard a more precious sound in my life, it truly was like hearing Angels singing :) :)
Anyways gotta get to bed now. Will post more later.

2009-04-28T22:49:00.003-05:00

Well, just thought I would give you guys something to laugh about :) I was thinking this afternoon, on the way home from the grocery store, how every trip to the store with Brady, ends up being a wild adventure,lol. Yep, you guessed it, I took Brady to the grocery store this afternoon. Thank goodness, I had already arranged for his dad to meet us at the store, to help with Brady. Brady and I arrived at the store about 30 minutes before his dad got there. Brady started, the minute we walked in the door. He immediately started waving and shrieking at everyone in the checkout lines, and the cashiers. Its funny how he not only requests everyones undivided attention, but demands it. Anyway I found some honey buns on sale, just as we walked in the door. Since they are Brady's favs, I decided to go ahead and get two boxes. Brady didn't see me place them in the cart, and immediately ran over to grab a box of them. I tried to explain to him that he already had two boxes in the cart, but he was so excited, he refused to listen. I took him to the cart and showed him that he had two boxes already and he seemed ok for a little bit. But he decided to open up a box of them, and try to eat them before we even paid for them. Once he figured out that I wasn't going to let him have them, he ran over and grabbed yet, another box of honey buns,lol. I ended up taking all buns away from him and dragging him away from that section. Next we came to the bananas,, which he also loves. I asked him if he wanted bananas, he shook his head yes and grabbed a bushel of them. But he got ticked off when I refused to let him eat them on spot. I dragged him away from them, and put the honey buns and bananas in the bottom of the cart where he couldn't reach them. On the second isle, I decided to put Brady in the cart, instead of letting him walk. We made to the third isle without incident, but shortly after, I noticed something pink go flying by my head. I forced open Brady's hands, to find raw hamburger meat. He had reached back into the cart, tore open the plastic and was throwing hamburger meat as we moved down the isle!!!!!!!!!! But hey, at least the little monkey didn't eat any of the raw meat, so it could have been worse. Thank God, his dad walked in shortly after the hamburger meat incident. I pretty much let his dad deal with the rest of the time we were there. His daddy decided to take him out and let him walk, since he was tearing all the groceries in the cart up. He still managed to grab things off the shelves, he is fast as lightening. The only other problem that we had was his uncontrollable urge to squeeze every loaf of bread that he came in contact with. We managed to get our groceries paid for and get out of the store, without any major happenings, so that was over all a good trip for us. I did let Brady ride home with his dad, for fear that he if he rode with me, he would get loose and have all the groceries half eaten by the time we got home :)
Anyways, that's pretty much what we done today. Brady decided not to sleep last night, even after having his sleeping pill. So he ended up playing hooky from school today. Not much else happening though.
Gotta sign off for now, Brady is getting into something :) Will post more later.

2009-04-27T01:42:00.003-05:00

Just wanted to let you all know that Brady is doing great! He seems to be getting over his ankle injury and will be returning back to school tomorrow :) We have had a busy, but good weekend. We done some yard cleaning this weekend, so Brady enjoyed being outside all weekend. He and Bubba jumped on the trampoline and played in the sprinkler Saturday, while me and dad worked in the yard. Little did we know that Brady tasted so sweet to the mosquitoes, they ate him up! So he is covered in bug bites and scratching like crazy :(
We had a good day today. We went with Nana and Paw Paw Travis to the river to ride. Brady had a blast, waving at all the people passing by and on shore, I think every got a good kick out of him. I even let him control the throttle on the ski, of course he wasn't consistent, and would go from 0 to 60mph, no speed in between,lol. We stopped in the middle of the lake and let him play in the water, which he loved. I don't even have to worry about exercising on days like today, he gives me plenty..
Life truly is great these days! Brady's seizures seem to be under control, its almost like getting our lives back, after having to take a couple years time out. The boys are at such a fun age, were just living life to the fullest, keeping in mind they will be grown tomorrow :O No, really, they are growing so fast! I cant believe that my sweet Brady will be 7yrs old next month! My sweet Peyton will be 11yrs old come November!!! I never really understood what people meant, when they said to enjoy the kids while they were little, that they would be grown before we knew it, I totally get it now. I truly do feel like the luckiest mommy in the world,to have been blessed with such special little boys :)
Anyways, sorry for the sappy note...... Last but not least, just want to thank all of you who have given to Bradys fundraising page for the ASF. As you can see, we are getting very close to reaching our goal, whooo hoooooo!
Gotta hit the hay for now, my little guy is sleeping. Will post more later.

2009-04-23T22:00:00.002-05:00

Hey guys! Not sure if I've written in since our second xray, so forgive me if I post this twice. We did get another xray yesterday, as well as a doctor visit. Again, they found no breaks or fractures in Brady's ankle, so it seems that its just a really bad sprain, thank goodness. He has been walking on it today, more than he should and more limping than walking. I was thinking about letting him go back to school tomorrow, but I think it might be wise to give him tomorrow and the rest of the weekend to get better, we don't want to re injure it for a third time.
Brady started the day off with a bang this morning. I think we finally got to bed around 3am this morning, but had to be back up early to wait for the respite worker, which never showed :( Brady got up in a foul mood this morning, he was constantly wining. About lunch, I took him to the kitchen to fix some spaghetti for lunch. I decided since he was so cranky, I would let him stay out of the high chair, while I cooked, which I never do. While I was breaking up the spaghetti, to put into the boiling water, Brady decided that he needed to stick his finger to the pretty orange colored burner on the stove. I of course was yelling no, no, no and running that way, but he still managed to get a finger tip on it. After that, there was no consoling him, I know it was hurting, but he was all out mad as well. I had to put him in the highchair to finish and just listen to him scream. After all that, he refused to eat any of the spaghetti! It took a long time for me to get him calmed down, and ended up having to put him back to sleep. He woke up in a much better mood, thank goodness!!!!
Oh yeah, I almost forgot to tell you guys, Brady lost another tooth in the midst of all the craziness today,lol. He got up this morning with it bleeding, he had been messing with it I guess. It was just barely hanging on and nearly fell out on its own. So he now is missing two,top, front teeth and one on the bottom front. He really does look like a snaggle tooth now.
Not much else going on. Brady is sitting here abusing the poor cat at the moment, but hey, he ain't messing with me (poor cat),lol! I'm not sure why, but this cat has really taken to Brady lately, no matter what Brady does to him. Brady was using my hand to play with the cat earlier, so that I would get bitten and not him, pretty darn smart! I'm not sure that the cat with have ears or a tail after a night with Brady, we don't usually let him inside. Since Brady is having such a good time, I'm going to let the kitty stay in for a while.
Anyways not much else happening here. I will post more later.

2009-04-21T20:11:00.001-05:00

2009-04-19T22:27:00.001-05:00

2009-04-19T22:13:00.002-05:00

Well guys, we just got back from our vacation, and had a blast! We took the camper to a beautiful campground in Florida. Brady of course made a ton of friends in the park, but seemed to really take to one of the lady park rangers there :) By the time we left, she was calling him "Blue Eyes". We spent a ton of time in the water, and even with sunscreen, Brady came back with a slight sunburn. We rode the waverunners a lot in the 4 days that we were there, as you can see in the pics. One time when I was riding Brady, we had the coolest thing happen. We slowed down in the water to take a break, and was able to watch 8 or more dolphins swimming all around us. Brady loved everything about the trip, even the hospital visit that he got to make :(
So before we left home, we were getting the camper loaded. Brady decided to run straight for the door and dove out head first. I totally freaked and was screaming before I could even get to him. His dad came running out and his brother and Brady was just laying on the ground looking at us in shock. We checked him out, but found only his ankle to be hurt. When we stood him up he didn't want to stand, but seemed to get better as the day went on. He had a big abrasion on his ankle, but seemed ok. So we left that afternoon, heading to Florida. The next day, we were going swimming and Brady stepped off of a log, I guess he twisted the ankle wrong and started crying, refusing to bear any weight on it. So we left about 5pm, taking him to the hospital there, to get it exrayed. We ended up waiting several hours, but the doc said it was just a sprain, which were still not sure is right. He is walking, but very much favoring the other foot. I think if he isnt any better by tomorrow, we will probably go back for more exrays.
So yeah, our lives are always filled with drama and excitement, but we still had a blast,lol.
Anyways, I am so tired by now, we haven't been home long. I'm heading to bed after I get these pics posted. I will feel you guys in on more details later, and keep you posted on Little Man's foot.

2009-04-12T22:42:00.003-05:00

We took Brady riding on the waverunners, for the first time today. He had a blast! He preferred to stand up the entire time, and was moving 100mph! He liked to ride slow, but loved to go fast, guess he takes after his mom,lol. When I was going to slow to suit him, he would reach up and push the throttle to make it go faster, he even tried to steer it a couple of times :) He waved at everyone on the shore and everyone that passed by us. I ended up having to ride with one leg wrapped around him, just to be sure that he didn't fall off. At one point he climbed onto the floor of the waverunner and was dragging his hand in the water. I think thats why he wanted to go fast, so that the water would splash him in the face. When I took him back to shore, he threw a fit, to get back on and ride some more, he did not want to leave. I told my hubby that I wouldn't even have exercise, since Brady gave me such a good workout while riding today.
Anyways we had a blast, hope you guys enjoy the pics.

2009-04-12T20:15:00.001-05:00

2009-04-12T20:04:00.001-05:00

2009-04-11T23:50:00.003-05:00

Well, its been a crazy day, but I'm proud to say that we survived,lol. We had spend the night company last night, just one little boy, Peyton's age. We had to get up this morning and go to a birthday party for another little friend, and brought all four brother and sisters home with us. So at one point, there were 7 screaming kids running around our house! Brady so enjoyed all the chaos, he was right up in the middle, eating the kids glitter while they done arts, stealing their Popsicles and eating them through the plastic, jumping on the trampoline with the kids, swinging and just following them everywhere. He is really learning to interact with the kids, and their all so accepting. They all really look out for Brady, and the best part is that they keep him entertained. We all stayed outside, all day. Brady was so tired, he fell asleep in his dads lap, about 2 hrs ago! So I guess we figured out how to make him sleep, just have 6 other kids come over to play,lol. Oh, and Brady has decided that driving the golf cart just might be fun! We have to take the key out, or Brady puts his foot on the gas and goes full throttle,lol. His Maw Maw was riding him earlier today and forgot to take the key out. She said that he nearly took off and left her while she was standing next to him,lol. Even when were driving him around, our little Evil Canival tries to put his foot on top of ours on the gas peddle,lol.
Anyways, were taking Brady to ride the waverunners for the first time tomorrow, I know that hes going to have a blast! Were taking the camera, so you guys be sure and check back for lots of pictures!
Thats about it for now, I'm heading to bed. Will post more tomorrow.

2009-04-08T23:33:00.003-05:00

Just wanted to let you guys know that Brady is doing great, other than not sleeping much these days. He went to bed Tuesday morning around 5:30am and was up between 8am and 9am. He stayed up til Wed morning around 4am, and was back up by 8am. He did go back to sleep and slept on and off most of the day. Soooooo, hopefully we can get him back sleeping very soon, I can never predict what this kiddo is going to do,lol.
Anyways, we had a good afternoon. Brady jumped on the trampoline with big brother and even learned to swing himself on the swings, it was so much fun watching him pushing off the ground with his feet :) He continues to learn so much, every day. Each and every day is full of sup rises, I look forward to each and every one!
He has been a monkey today, and getting into everything, of course. We were painting some things outside this afternoon, and Brady decided to stick his entire hand and arm all the way down in the bucket of paint! So he now has a very white hand and arm, and big white spot on his tummy. This is the kind of pain that doesn't wash off with water, so we just have to wait for it to wear off. The cement under the carport is nicely decorated with Brady feet prints. I guess we can look back on it, in years to come, and laugh.
Last by not least, I wanted to remind all of you guys to go to http://www.angelman.org/walk-a-thon/walk-a-thon-registration/ and register for the Angelman Walk A Thon, in Mobile Al, May 16th. We would love to have each and every one of you come and join us, in supporting our very special Angels. While I know that it might be a good trip for some of you, it will be well worth you time. It will be an experience that you will never forget! You can even come a day early and make it a small vacation, there is tons to do in Mobile. So if you need more info, please don't hesitate to contact me. Our first walk for Mobile was last year, and the attendance was great, but we want to break that record this year, so we need your help!!! If you are unable to be there in body, you can be there in spirit and register for the virtual walker. But again, we would love to have everyone there, but understand that some just wont be able to attend!
So I'm done rambling for now, if ya have any questions, please let me know! Will post more later.

2009-04-07T02:46:00.003-05:00

Just wanted to say thanks to those who have donated to Bradys fundraising page, we love you Miss, or should I say, soon to be Mrs. Lisa! Brady says to tell you congrats! Call us, cant find your number, not that you would be surprised about that,lol.

2009-04-01T22:56:00.002-05:00

Well, its official, Brady has turned into Linus off of Charlie Brown. I would like to say that he doesn't have that ora of odor following him around, but it just depends on what hes been into that particular day, as to how bad his odor ora is,lol. Anyway, Brady has now decided that he loves blankets and needs to be wrapped up at all times. Just yesterday, Brady went into his brothers room, snatched his sheet off his bed, and carried it to Maw Maw, to wrap him up,lol. Anytime we sit down he will grab the first throw or blanket he can find, drag it over and have us wrap him up, hes quite the lap baby too! I must say though, it cracks me up to watch him dragging a king size comforter, he refuses to let it get the best of him.
Another cute thing Brady has started doing, is grabbing any clothes he can find, bringing them to us, and wanting them put on. We figured out that when he does this, it means that he wants to go somewhere. I'm not really sure where it is that he wants to go, not sure he has any particular place in mind, but he just feels to urge to go some place.
Brady has also been working on his unlocking skills. He can now, stand on his tip toes and reach the lock on the screen door. He was giving it his best shot and getting the lock undone tonight, so I'm sure it wont be long before he gets it figured out. Guess this means we get to do some more Brady proofing on the door.
I was very proud of Brady last night. I know it wont seem like much to some of you, but for those of you who know Brady, you will see this as marked improvement. Brady brought me a bag of chips last night, and a cup to put his chips in. I could not believe that he didn't just rip into the bag and pour all the chips out. It was almost polite, the way that he brought them and the cup to me, to ask for some.
Anyway not much else going on here. Gotta get back to Brady Boy, hes not in much of a sleeping mood tonight.
Will post more later.

2009-03-30T22:30:00.002-05:00

Well, we haven't been home long. We had to take Brady to a neuro appt in Pcola today. They have moved,so we ended up getting totally lost and being 30 minutes late, guess it was good that we were the last patients. Anyway, the appt went really well. The doc said that Brady was one of the most successful cases he has handled, as far as the VNS goes. We didn't have to make any changes on meds or the VNS, everything looks really good. At this point we have excellent seizure control (knock on wood). Everyone there was so surprised at how well Brady is doing. He sat in the chair, for the first time ever, by himself, to get his blood pressure. He walked all over the office, and of course was into everything. He tried to work on the computer and had to open every door he came in contact with. He even pushed the elevator button for us. He was jabbering to the doctor, not sure what all he said, but we could make out, mama, bubba and ok. His doc was bragging to the new practitioner about how far Brady has come, as far as development and seizure control goes. So we were super pleased with the overall visit.
I have to share with you guys, that Brady's teacher said that he sat in a chair for 20 minutes straight and watched a movie, at school on Friday. Brady has never, sat still for 20 minutes, let alone watched 20 minutes of a movie! He has his manic moments, but they are becoming fewer. I can see my little man growing up, everyday. I cannot believe that he will be 7yrs old in May! It seems like just yesterday, he was 2yrs old and newly diagnosed! Wow, what a journey it has been to this point! Things have been chaotic at times, but the good times far outweigh the bad.
Anyways, its been a long day and I'm beat, so gotta sign off for now. Will post more later.

Check out Bradys fundraising page!

2009-03-26T00:20:00.005-05:00

Hey guys, as you can see, I have been making some changes to Brady's blog. I deleted the music, so that it would be more easily accessible to those of you, who are on dial up. We want everyone to have an opportunity to keep up to date on Brady's adventures, the music just makes things to slow for dial up, sorry guys.
Also, I finally got Brady's Fundraising Link listed on his blog. Just click on the symbol that says Angelman Syndrome Foundation, Donate Now, if you want to give to Brady's Fundraising page. As you can see, we ended up raising a whopping $1,521.00last year, and would love to break that record this year! Remember that 100% of the funds donated, go to the Angelman Syndrome Foundation, for research and support. So, any and all donations are welcome, big or small. Thank you guys so much for your continued support, every year!

2009-03-25T00:23:00.003-05:00

Just thought I would post a quick update, since Brady is a wild man tonight! Things are going great here. Brady had a good day at school today, I was able to get so much cleaning done while he was there! Not sure what was going on with him after we got home. He was so mad and frustrated with me. He kept trying to tell me something, but I never could figure out what it was he really wanted. He led me over to the car, put my hand on the handle, so I guess he wanted to go somewhere, not sure where though,lol. I drove him around the yard, but every time I turned around to come back to the house, he started telling me off. I ended up having to go down the road and drive him around for 10 minutes, to make him happy! I have heard of driving babies with colic around, but not a 6yr old,lol. Anyway, he was a bit better when we got home and seems to be fine now. So either the ride made him happy, he forgot what it was he wanted, or just figured mom was to dumb to figure it out,lol.
The boys have field day coming up at school, this will Brady's first year participating, so it should be pretty interesting. I feel sorry for his teacher that has to run the 50 yard dash with him :) He should do great at the ring toss, since he can totally throw like a pro baseball player! I will be sure to get lots of pictures and videos for you guys to see, it should be a hoot.
Were totally getting ready for spring break here. Were taking the boys camping for 4 days in Florida. We just got two wave runners, so we should all be water logged when wet get back. I will be sure to get more pics and videos, so you guys don't have to keep reading my boring posts,lol. Brady is loving the wave runners, he and his brother like to pretend to drive them and "dodge the ice burgs",lol.
Other than the usual, climbing, spilling, jumping, giggling, mess making little Brady, things are pretty calm here at the moment, even though most people would consider our lives anything but calm :)
Anyway, gotta get back to my little monkey, he needs some mommy time, cant imagine that......

2009-03-22T23:05:00.002-05:00

First let me update you guys on things here. Brady is doing great, getting smarter by the day! Its getting hard for us to stay ahead of him now, he always seems to outsmart us,lol. He is doing great in school, but still having some issues with keeping his hands to himself :0 They got his new swing up last week, he loves it! When I came to pick him up, a first grade girl, met me in the hall, telling me that they had Brady's new swing up and that he loved it so much. I told her that they would have to take turns pushing him in the swing.
Brady is finally learning to venture off from us, when we have him outside. He is loving his new found freedom. He runs around the yard, jumps on the trampoline and plays in the sandbox. But he has to come back and sit with us every 5 minutes or so, I guess its just reassurance for him. His brother really enjoys having someone to play outside with. He really wants us to leave Brady outside with him, but we haven't got up the nerve to do that, not sure we ever will.
Its been a wild week here. My hubby had to have minor surgery on Tuesday, he has 6 kidney stones, one was blocking the tube. He goes back to the doc on Tuesday, and will most likely have another surgery the following Tuesday.
Peyton ended up with a slight fever the day of his dads surgery, so Maw Maw ended up with two busy boys that day, while I was at the hospital with their dad.
I have been working on getting sponsors together for our Angelman Walk in Mobile Al, its been a job so far, but is going well. So mark your calendars guys, Angelman Walk, Mobile Al, May 16!! Were going to have good food, good fellowship and lots of activities for both adults and kids. If you need more info, feel free to contact me at sfore@centurytel.net
I wont go into detail, but we have had the most amazing day today. We met the kindest couple, I think we've ever met. I hope and pray that we made an impact on them, just as they made an impact on us. Just remember, when you think that the world is full of uncaring, selfish people, this is not true! Always try to see the good in those that surround you. Never take anything for granted and take every opportunity to be inspired. Remember to pay it forward every chance you get, whether it be big or small, because one day, it will come back to you. When you take the chance to bless someones life, you will be blessed in the end.
So anyways, enough of my rambling. I will keep you guys posted on things here. I'm sure that I will have some Brady stories to share very soon :)

2009-03-10T00:28:00.002-05:00

Guess you guys seen the pics from the petting zoo. Brady had a good time, but mostly enjoyed socializing with everyone. The cow that was mooing totally cracked him up though. He liked the baby chicks, but didn't know how to be gentle and nearly decapitated one of them,lol. He also liked the turkey when it made noises, he laughed so hard. When it was time to pet the baby goats and cow, he wasn't very interested, was far more interested in playing with the young men who were holding them,lol. As for the catfish in a bucket of water, wellllllllll, you can guess what he wanted to do there. But overall, he had a good time, was very tired before we were done. He did walk the entire time we were there, its so nice having him finally walking.
Its been a busy weekend here. We were cleaning up the camper, getting ready for our AEA trip. Brady was so helpful. He gave himself about 4 baths, with his clothes on, flooded the kitchen floor twice, flipped the air conditioner on and off, and even managed to lock me out, when I ran to get air freshener from the car. Peyton and I begged Brady, through the window, to unlock the door, and turn the water off. I had to use the shop vac, to suck up all the water in the floor! So, we spent the entire weekend, Brady proofing the camper. we had to put a cover over the kitchen faucet, put a locking door knob, to keep him out of the bathroom, we put a lock at the top of the closet door and had to build a box over the air conditioner controls. Last summer Brady didn't know how to turn faucet knobs or door knobs, so things are going to be different this year. I'm just glad that we figured all this out before we left for our trip next month. Hopefully we have some things Brady proofed now,so maybe it will be a bit easier. He has been such a busy boy these days. He has stopped sleeping since Thursday night, and has been silly manic ever since. He is destructive and thinks it is just hilarious when he tears something up. I know it sounds strange, but a part of me his just thankful that he is able to do the things he does, no matter how tired I get, or how busy he keeps us. One thing is for sure, we never get bored here at our house.
Anyways, not much else happening here. Will post more later.

2009-03-09T23:59:00.002-05:00

Brady at petting zoo. (1st school trip)

2009-03-09T23:27:00.002-05:00

Brady in the news.

2009-03-04T23:42:00.002-06:00

Almost forgot to share this article with everyone. Our paper done an article on Rare Disease Day, and Brady was able to participate. Ive pasted the article below.

State honors rare disease sufferers
By Stephanie Nelson (Contact) | Andalusia Star-News

Published Saturday, February 28, 2009

Courtesy photo

Brady Fore
To Covington County residents, Brady Fore is already a somewhat well-known name. After today, all of Alabama will know his name — and about others like him who suffer from uncommon diseases — after the governor has designated today, Feb. 28, as “Rare Disease Day” in Alabama. This will also be the first time the nation will recognize the last day of February as “Rare Disease Day.”

Brady, 5, has Angelman syndrome, a genetic disorder that causes developmental delays and neurological problems. The disorder causes him to be non-verbal and have seizures. It is considered a rare disease because it affects fewer than 200,000 Americans. Since so few people have the disease, few Americans are aware it even exists.

The spotlight was given to “Rare Disease Day” to increase public awareness of this and other uncommon diseases. The day is also recognized by the National Organization for Rare Disorders (NORD) to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world. This will be the second time for the worldwide recognition.

“People with rare diseases remain a medically undeserved population in every country,” said Peter Saltonstall, president of NORD. “This day is intended to bring together the patients and families with rare diseases to discuss the need for greater awareness, more research, and better access to diagnosis and treatment.”

Stephanie Fore, Brady’s mother, said she is grateful that the state is commemorating “Rare Disease Day” and hopes it brings more attention to little-known diseases.

“I think it’s wonderful,” Fore said. “It sheds light on a lot of disorders and diseases that people never heard of. We try to spread the word about Angelman syndrome every chance we get.

“Brady is such a wonderful child,” she said. “There are so many more children out there that while they may not suffer from Angleman syndrome, they may have some other something that is not easily recognizable like a child with say, Down’s syndrome or multiple sclerosis.”

Fore receives services and assistance through Children’s Rehabilitation Service, a division of the Alabama Department of Rehabilitation Services (ADRS).

Other Alabamians with rare diseases also can receive assistance through ADRS, the state agency whose mission is to enable Alabama’s children and adults with disabilities to achieve their maximum potential. Through its four major programs, the department provides medical, educational and employment assistance to people of all ages with disabilities.

For more information about ADRS, call 1-800-441-7607.

2009-03-04T23:20:00.002-06:00

Just wanted to let you guys know that Brady is doing great! He is loving school, wish his brother could take after him,lol. Brady wakes up in the morning, I get him dressed, and hes trying to go out the door, to go to school, even before I am ready. He gets so mad when I tell him to wait, that its not time yet. This morning he got dressed and while I was getting my stuff together,he ran out the door, opened the car door and was getting in, lol. We had to go to school this morning to take his brother some lunch money,and Brady threw a fit when we had to leave. He totally wanted to stay at school,lol. I took him back at 1pm for his class, he was so excited. We even got to see the firetruck at school, but he was more interested in the firefighters :) Anyway when I came back to get him after class, he was sitting in the chair drinking his cup. I asked him if he was ready to go, he shook his head no and waved bye to me,lol. He yelled the entire way to the car. I think he would move into school if I let him.
We decided to do some rearranging and go through some old things that I needed to get rid of, as well as hang some shades in the bathroom. While I was doing this, I look over to see Brady standing in the bathtub, with his pants, shoes and socks, in the water! I accidentally left the water in the tub, where I gave him his bath before school this morning, so guess it was my fault.
Well, tomorrow will be an exciting day for Mr.Brady. He is going on his first school field trip, to the petting zoo, then to the park. I know hes going to have so much fun. He may not enjoy the animals, but he will certainly enjoy the other people there. I am charging my camera, so will have lots of pics after tomorrow. I will get them posted here tomorrow night.
Anyway, gotta get some sleep. Its going to be a long day tomorrow. I will post more later.

2009-02-27T08:25:00.003-06:00

Hey guys! Just wanted to post a quick update, since were gonna be heading out soon. Brady is doing GREAT! He is over all of his sickness, and back to his honory, opinionated little self. He slept a few hours last night, but was up and ready to go by 3am. I decided since we had some last minute things to pick up in town, that would be a good time to do so. We were at Wal-mart before 4am. It was nice and quiet there, no other shoppers in the store. The best part was that we didn't even have to wait in line,lol. Brady had to greet all the employees in the entire store of course. I decided to let him get a toy, hoping it would keep him entertained on our trip. It was the cutest thing ever, watching him running up and down the toy isles, playing with all the toys. Its funny how we take the little things for granted, before we have a child like Brady. I was elated to see my little man being able to run, play with all the toys, and even make obvious choices about what he wanted to buy. I am so thankful that we have gotten to a point in Brady's life, that he is able to just be a 6yr old little boy.There was a time when we wondered if Brady would ever be capable to doing things like this. In the end, he picked out one of his favorite toys ever, a really cool shape sorter. We brought it home and put the batteries in, but he wasn't happy, having to give it up, so that I could load it into the car,lol.
Anyways as I said, Brady is doing awesome. His skills are improving every day. His communication is fantastic. Its so cool that he is now learning to take instruction and direction. He is becoming more independent as time goes on, which makes things so much easier for all of us. As most 6yr olds, he doesn't always mind, can be very opinionated and bull headed at times. But it thrills me to see him acting like other children his age.
Well, I've rambled on long enough. Guess I better get going here, so much still do. Hope to have some pictures to post by the end of the weekend.

2009-02-26T01:51:00.002-06:00

Just wanted to let everyone know that Brady is doing much better. He seems to have gotten over his Viral Gastroenteritis, and been nice enough to share it with his mommy and brother. But I think that we are on the mends now, his brother is going back to school tomorrow. Were considering letting Brady go back on Friday. His brother and myself didn't have nearly as bad a case as Brady did. Everything else is good here. Brady is finally up and getting into everything now. He is still sleeping a lot. He didn't sleep last night, but slept all day, til 5:30pm and is now back asleep. He is spending more time asleep, than awake these days. This crud has really taken a toll on our little guy.
Anyway just wanted to post a quick update, gotta hit the hay now.

2009-02-22T22:29:00.002-06:00

Just time for a quick update. Brady is very sick at the moment. He suddenly started throwing up Saturday morning, then the other tummy problems hit shortly after. By lunch he was so sick, that we needed to go to the hospital for tests. While we were there, he had a small seizure, so we opted to take him to the ER to be checked out. The doc on call, was wonderful, very knowledgeable about AS. He diagnosed Brady with Gastroenteritis. Brady wasn't walking at all yesterday, was very lethargic, and was crying with his tummy. He has seemed some better today, even walked a little bit, but seems to be getting sicker tonight. I had to give him phenogran again, since he started gagging like he was going to vomit. His diapers are having to be changed about every 10 minutes, but there isn't as much blood in them. His eyes have black circles under them and his skin is a very pale white. He is mostly laying around, we can tell that he is miserable. When Brady isn't smiling, there is something bad wrong, and we get worried. Were waiting on the stool culture to come back, but they tell us it will probably be the end of the week before we know anything. If this continues for much longer, we are going to have to do something, regardless of whether or not the cultures come back.
Anyway, I will keep everyone posted on how hes doing. But I have to get back to him for now.. Say a prayer for our little guy.

Where did my teeth go!

2009-02-20T17:11:00.003-06:00

2009-02-15T23:58:00.003-06:00

Well, things are going great here! Brady has been sleeping so much better lately, just hoping it lasts. School is going great for him. His teacher told me Friday that Brady now recognizes the number 1 and 2 and is using his communication device appropriately most of the time. They have been working no his name, he is doing great with that as well. He totally loves school and cant wait to get there every day. When I ask if hes ready to go to school, he shakes his head yes and pushes me out the door. Even when I don't say anything but am getting him dressed, he gets so excited, he knows where hes going. When we get to school, he pushes me out the door, and goes to his desk to work. My mother n law laughed and said that the would be the first male from our family, to actually love school,lol.
Brady is also doing great at home, his behavior has calmed down so much. He is learning in leaps and bounds, some things good and some things not so good. We now have to not only keep doors shut, but keep them locked as well. He has figured out all the door knobs now. I'm sure it wont be long before he figures out the locks, but we are just taking it day by day for now.
Brady also figured out how to stand on toys, to reach over things, and climb on things, so that is a new challenge for us. I dreaded the day that he figured out how to stand on objects, to do things he shouldn't be doing.
He has also learned how to change the channels on the TV, but we have to be careful that he doesn't order movies :) He loves turning the surround sound on, as loud as it will go. Guess were going to have to keep it unplugged. Its not a pleasant sound for his dad to wake up to, in the middle of night. I'm not sure why, but Brady thinks the TV has to be on at all times. The first thing he does is try to turn it on when he wakes up. If he cant get it on, he brings me both remotes, to turn it on for him.
Another cute thing that he does lately, is when he wants chips or anything that we might be eating at the moment, he goes over to his play room and gets any kind of cup or bowl that he can find, and has us to put food in it for him.
He really has ways of letting us know when he wants something, he is a smart little cookie. Now we just have to get the potty training thing going. There is no reason why this kiddo cant be trained, he is fully capable. Maybe since its getting warm and there will be fewer clothes, we can get training off the ground.
One last thing that I want to ask everyone to do, is say prayers for all of our Angels and their families who are sick, or going through difficult times at the moment.
We have one that has now gotten a trachea and cant gain seizure control, one that has been diagnosed with a relapse of cancer, one that is having terrible seizures and her dad has been diagnosed with a relapse of cancer, one that is having kidney problems as well as major seizure issues, one that is having med troubles, seizure troubles, shaking and lethargy, with no known cause and last but not least, we have an Angel in a drug induced coma, suffering from terrible seizures. So I ask that you pray for all of these families that I have listed and pray for those that I might have missed. They all need all the prayers and support that we can give them. Hold your loved ones close and be thankful for good health and for every day that you are able to spend with them and remember those who are not able to do or say the same.
Well, not much else happening here. I will post more updates as they come.

2009-02-09T22:20:00.002-06:00

Well I went for my first Wish today, it was great! I met the sweetest little boy, that really knows what he wants :)
Since I was gone, Brady's dad had to take off work and take him to and from school. He was amazed because Brady walked into his classroom, turned and waved bye, pushed his dad out the door and shut the door in his face,lol lol. This is the first time that his dad has taken him to school, so it was really hard on him. He has never left Brady with anyone besides me, and he so hated to leave him. I think it made things a little easier since Brady was telling him to leave :)
Brady's teacher said she could tell that he slept last night, he had a fabulous school day. It sounds like he was very cooperative. He slept all night last night and got up about 7am this morning. I on the other hand cant straighten out my sleeping habits that easy, so I was up til 5am and back up at 7am. I wish I could sleep when he sleeps, but if your not tired at the moment, it makes sleeping really hard.
Anyways, Brady has had a great day. He has been in such a happy mood. He wasn't acting sleepy earlier, but is now laying next to me, going to sleep, whooo hoooo!! I am tired tonight, so guess I'm gonna get ready to hit the hay with him.
I will post more later.

2009-02-09T01:18:00.003-06:00

We've been getting behind in our posts, so I'm going to try and do better in the future :)
Brady is doing great. His sleeping is slowly improving, thank goodness! He has had a great weekend, been outside a lot. He had a Popsicle and some blue gum today, so mix that with the dirt, and he looked a site,lol. He loves being outside, when the weather agrees. He jumped on the trampoline with big brother today, they both love that.
Yesterday we had a fire in the fire pit outside, and Brady decided that he should go over and stick his hands in the fire! Thank goodness his brother was close by and able to stop him before he succeeded. It amazes me, but even more so, scares me to death, that he is totally fearless. He is very cautious about eating food that is the least bit warm, but yet he doesn't mind sticking his hands in a fire! He is learning to actually play and run around the yard now. Where as before he wanted to sit on us or on his Maw Maw, the entire time. His brother had company this weekend, and Brady played on the swings with them. Its so exciting to see Brady interacting with other kids, he almost seems typical at times. He really is growing up.
He is a busy boy these days, opening doors, climbing in the tub and turning the water on, escaping to the outside, climbing on everything, he really keeps us on our toes!
He lost another top, front tooth, so he has a really big gap now, its to cute!
He is doing great in school, he loves being there and loves his teachers. He is getting so much better about keeping his hands to himself around the other kids. But even when he does mess with them, they are so cute about it. They don't want us to get onto Brady about anything, they are all like a bunch of mother hens :) Its so nice to be able to send him to school and know that he is very well taken care of and that the people there truly love him and want whats best for him.
I got a really good deal on a very nice communication device, so were just waiting for it to come in now. I hope that this will be something that he can use here at home, hes doing so well at school, with his devices. I think that the new communication abilities have opened up so many new doors for him, he feels like a big boy. The best part of all of it, is that he doesn't get as frustrated and much less aggressive, than ever before. I have always tried to put myself in his shoes. I know it must be so hard to know what you want to say, but lack the ability to communicate that. I think the hardest two parts of Angelman Syndrome have been seizures and the lack of communication skills. I'm praying that in the near future, we will be able to overcome both of these hurdles and really move onto bigger and better things. The sky is the limit for our little guy, I know that he is capable of so much more than anyone realises. He continues to surprise me everyday.
Anyways, guess I better get some sleep. I have a Make A Wish meeting tomorrow, so wish me luck!

2009-02-05T07:18:00.002-06:00

Well, its after 7am here, haven't been to sleep yet. Brady is still going strong, so not sure we will even go to sleep today. On the bright side, I was able to get tons done here in the house all night. I'm loving my new door from this room, to the laundry room. I was able to get all my laundry done, go through my old clothes and rearrange my entire closet, linens and clothes. Who knows, I might actually be able to get the entire house clean, all at the same time, for a change :)
We have a new respite worker coming in a few hours, hopefully I can stay awake for her. I did think about taking a nap while she watches Brady though,lol.
Anyways not much happening here. Brady is still a bit sick, I think hes just finishing up with this bug that we have all had. He has only manage to go to school 1day this week, not sure if he will make it tomorrow or not.
He has been pretty wound up tonight, you wouldn't know he was sick. He is loving the new freedom of being able to turn doorknobs now. He managed to escape into the bathroom while I was putting clothes up last night. I found him sitting in a tub with water, in his pajamas. So I guess now we have to learn to not only shut all the doors, but have to lock them as well. Guess we will be changing out the knobs that don't have locks on them.
Well guess I better see what my monkey is up to, hes playing in his play room, and is way to quiet.
Will post more later.

2009-02-02T22:20:00.002-06:00

Well, Brady is still a bit cranky, but I think were going to attempt to send him to school tomorrow. He doesn't have a temp the cough is getting better.
I finally got up the nerve to put breakable nicknack's in our new room,for the first time ever! So far Brady has been leaving the decor alone, hes more interested in the remotes, and opening the doors. He has learned to turn the doorknobs on the doors going in and out of this room, so that has made things a bit more interesting. So far, I can lock them and he doesn't know how to unlock, but its just a matter of time before he figures the locks out. Luckily I have locks installed at the top of the door, so that will be the last resort. Leave it to our little guy to show us the loop holes in our newly designed, Brady proof room :) His dad got the tv mounted up on the wall, so just waiting to see what Brady is going to do with that.
Anyways thats about it for now. Will post more later.

2009-01-31T23:43:00.002-06:00

Well, its been a while since our last update, so thought I would post a quick one tonight. Brady is doing well, but we've all been sick here with Strep Throat. Brady has handled it better than me and his brother, thank goodness. Other than a slight cough and occasional sneeze, hes doing great. His sleeping has been all over the place this past week,and he hasn't made it to school all week. He has been very active, almost manic. He did manage to watch part of a movie, Horton Here's A Who. He stood in front of the tv, and danced around, even putting his face up to the tv a few times,lol. It was adorable. Brady hasn't been out of the house all week, I think hes getting really bored being at home. Hopefully next week he can venture back out into the land of the living :)
We done some renovations here in what used to be the therapy room, making it more suitable for all of us. We put up a new quarter wall, putting all of Brady's toys on one side, and adding all padding to the floor, while the other side actually looks like an adults room. Brady loves the new room/rooms. He spends alot of time on his side of the wall, playing with he toys, occasionally throwing some toys over the top. His daddy got a new tv. But we cant mount it on the wall, until the bracket comes in. Brady has shown lots of interest in the new tv, not a good thing. Hopefully it can survive until we can get it hung up out of his reach. The big screen that was here, has now retired to the living room, with lots of war injuries from Brady,lol. The old tv really has been a good one, when Brady pours something in it, we just unplug it, and it starts back working in a couple of days, but I'm sure its days left were numbered.
Anyways thats about it for now. Will post more later.

2009-01-20T22:09:00.002-06:00

Hey guys! Brady is doing great, had a great day at school today. He is using his communication device and pictures with intent. He was hungry and very motivated to let them know what it was he wanted to eat. He was trying to tell them that he wanted something else, but they couldn't figure it out. I think his teacher said that he refused to use his device. Apparently they forgot to put the picture of his cup, on his communication device. So he searched through the other pictures until he found the picture of his cup and was quick to let them know he was thirsty :)
We went to the grocery store and he let me know that he wanted pretzels, his new favorite food. When we got home, he took them out of the bag and started patting them, just like he does his device and pictures, he didn't even try to open them! He has started eating like Mr. Piggy lately. He is hungry and eats all the time. He will eat most anything these days, even some meats. I can tell that he is gaining weight, we cant even see his ribs anymore.
So far we haven't seen any other seizure activity and he seems to be tolerating the increase of depakote. I'm so glad to say that it seems he hasn't lost any skills, due to the recent seizure.
Brady learned to run today. We were late for school, so I was hurrying him down the hallway, so we could leave. I told him "come on, lets run", and he did!! He looks so cute running.
And for my all time brag of the day............ Brady helped me carry the groceries to the kitchen tonight!!!! I handed him a light bag and told him to come with me, and carry the bag to the kitchen and he did it!!!!!!!!! He looked so cute walking down the hallway holding that bag out in front of him :) He only managed to carry one bag, but hey, thats a start!!!!
He has been doing so many typical things lately, I see his Independence blossoming these days, I love it!! He continues to amaze me everyday.
Anyways thats about it for me, just thought I would post a quick update.

2009-01-16T15:08:00.002-06:00

Just wanted to let you know that Brady is doing well. He seems to have gotten past the worst part of this whole seizure ordeal. He was up and going by lunch yesterday, his seizure was at 4am. He seems to be nearly back to himself by today. We don't know what caused the latest seizure, but were just glad its over and hes ok. We have increased one of his meds and will having the VNS turned up next week, so hopefully that will do the trick.
As for the seizure, I know you guys are all probably wondering when and how it happened. This week I have been feeling uneasy, not anything was different, but I just didn't feel right. I kept him out of school on Tuesday, just thinking that a seizure might be coming. By Wed I had convinced myself that I must be loosing my mind. I took him to school, ut took him to the doctor afterward,to have him checked out, just in case. They couldn't find anything, which isn't surprising since detecting a seizure that hadn't happened yet, would be nearly impossible. I told his teacher before we left that day, that I just had a feeling that Brady was going to have a seizure.
Anyway we came home that night, nothing out of the ordinary. Brady played with his toys all night and really didn't act any different that usual. By 4am he fell asleep on the couch, so I carried him to my bed. It wasn't long after I put him in our bed that this feeling of OMG came over me. I started feeling around in the dark, to see if Brady was jerking, but he wasn't. I still felt that something wasn't right, and reached over to feel of his face, but his head was turned all the way to one side, was stiff and I couldn't move it at all. I told my husband then that I thought Brady was seizing, to turn the light on. His head and eyes were turned to the left side, which isn't typical for him. They usually turn to the right side. His hand was also jerking a little bit, but nothing like with his seizures in the past. We started using the VNS magnet on him and swiped him 5 times for the next 5 minutes but the seizure didn't stop, it only changed. His eyes came to the front, but his pupils were so dilated that you couldn't even see the blue in his eyes. He was flailing around like he was going to get up and looked as if he were scared to death. We waited another 4 to 5 minutes, trying to give the VNS time to work, I think we might have even swiped him once more. It kind of worried me because as I looked at his chest, it started developing this red rash under the skin, and as I watched it spread from the top part of his chest, nearly down to his stomach. So we decided that we had to give the diastat, but it took two of us to hold him down, because he was fighting us with all his might. It was like he was there, but not really there. He had no idea who we were, or what we were doing to him, let alone what was going on. So anyway we did give the diastat and it was a matter of seconds before it started working. He slept until about lunch that day, but was good to after that.
So were hanging in here, just glad that things happened the way they did and that our little guy is alive and well.
I will keep you guys posted on how things go here. Were just believing its going to be an uneventful rest of the year :)

2009-01-15T07:07:00.002-06:00

Spoke to soon I guess! Brady had a nasty seizure about 4am this morning. Thank God I was awake and noticed a strange movement in the dark. We used the VNS magnet 5 times before giving diastat, the seizure finally stopped after about 10 minutes. Brady has been throwing up on and off for the last couple of hours, probably from using the magnet. I will be sitting up to watch him, until his dad can get home and relieve me to get some sleep. So say a prayer for our little guy, hes had a rough morning already.

2009-01-14T23:36:00.003-06:00

Well its been a while since I last posted, so thought I would play catch up tonight. Things are going well here, Brady is thriving these days. He is going to school 4 days a week, without mommy being there. He doesn't even care that I leave him there, most times hes to busy to even wave bye to me. The teachers say he is doing fantastic! He is using a 32 picture communication board at school and doing amazingly well with it. We are all so proud of our big boy! He has been going in with the regular Kinder class, they all love him and he loves them. The teacher said he sat for 5 minutes in a regular chair today,without even having to be prompted to do so. Brady seems to be surpassing everything that we expected him to be doing this year, the sky is the limit! His behavior seems to be really improving, I think school has a lot to do with this.
He has been acting a bit strange the last few days, so I took him to the doc today. He has been picking at his ear, so were thinking he might be getting an infection. The doc couldn't see anything because of the excessive wax, so he put some drops in to dissolve it and were going to start using antibiotic drops, to be on the safe side.
Anyways thats about it for now. I will post more later.

2009-01-04T22:34:00.003-06:00

Well its been a while since I posted, so thought I would play catch up tonight.
Brady is doing well, hes been such a good boy the last few days. He went to the grocery store with me Friday, and behaved so well. He helped me push the cart around the entire store and didn't take anything off the shelves, or out of the cart. He made several new friends while he helped me with the cart, hes such a monkey :) I let him pick out what kind of chips he wanted, of course he chose his favorite, Ranch Doritos. Then I let him choose his snack cakes, and he of course chose honey buns. Oh and he did make it known that he wanted some bananas :) Its so fun watching him make choices for himself, he is a kid that knows what he wants.
He has been playing with all his new Christmas toys, instead of sitting on me all the time, I am so thankful and hope he doesn't get tired of the new toys anytime soon.
Brady's Saint Bernard has been expecting pups any day now. Brady has been so cute about it. I had her in a kiddy pool in the room with us. Brady would wake up last night, and lean off the couch, look in the pool at her and I would tell him "no pups yet", then he would lay back down and do the same thing again in a little while. He knew exactly what was going on and was anxiously awaiting the pups arrival. She had 9beautiful Saint pups today, Brady has been thrilled, and very curious about them. He even tried to climb in with them a few times, but he has been very good for the most part.
Brady did manage to scare me to death last night. His brother left the outside door unlocked, so Brady escaped while I was in the kitchen getting supper started. I hadn't heard or seen him in about 5 minutes, so decided to go check on him and ended up finding him outside in the middle of a thunderstorm, eating the dogs food!!!!!
Brady has been doing well otherwise. We decided to velcro his plate to the table, so that he could sit at the table like a big boy when we all eat supper. I have been fixing the same things on his plate, as is on ours, and hes been eating it, although he does still have some trouble using his fork! He has tried a couple of times to grab the plate up, but gave up pretty quickly once he realised it was stuck :)
Anyways, thats about it for now. I promise I will start posting more regularly,and I promise to get the Christmas photos uploaded very soon, Ive been a bit lazy lately,lol.

2008-12-25T23:17:00.002-06:00

Well, its been a great Christmas here!! Brady has had the most fun I have ever seen him have. He was so into opening presents this year, he had a blast!!! He got this huge pop up play house, which is now taking up lots of space in the house, and filled with all his Christmas toys. He loves this playhouse, spends lots of time playing in it. I don't think I have ever seen him this entertained by anything other than him climbing all over me and his dad, so its nice change. He has really enjoyed socializing with everyone, hes such a little monkey. He was a wild man yesterday. We had two different parties to go to, and I guess all the excitement got to him. He was happy as could be, but also wild as could be. At the end of the night, after everyone had left Maw Maw's house, he decided to sneak into the kitchen and grab two hand fulls of the chocolate cake, like he really needed even more sugar :o We did let him eat it, and just cleaned up the bread crumb trail that he left through the house. I know most people would have been freaked out, but he just looked so darn funny sporting two hands and a face covered of chocolate cake, we all had to laugh.
Anyways I do have some pictures that I will post later, just to tired to get them loaded tonight. Hope everyone had a very Merry Christmas, will post more later.

Having a little fun :)

2008-12-21T10:41:00.001-06:00

Send your own ElfYourself eCards

2008-12-21T01:52:00.003-06:00

Well, not sure if I've posted since Brady's two doctors appts on Wed, so thought I would update everyone. The first appt was with the neuro, he turned up Bradys VNS. He said everything looks great, and we will probably start weaning Brady off of the Keppra in January. We left there and went to see the Ortho, this appt also went well. Brady is followed by two Orthos, and both say he looks great, so were glad to know that.
Not much else going on here. I took Brady to town with me Friday,and it was an exciting, exhausting trip, to say the least. He was pretty good in 2 of the stores, but decided to show out in the third. He started out by trying to eat some batteries that I was picking through, for the upcoming Christmas toys. He then found some new sippy cups and decided that he must have 2 of one kind and 1 of the other. I tried to talk him down to only one cup, then to 3 of the same kind, but he insisted that he have 3 of one and 1 of the other. So I got tired of hearing him fuss, and gave in. We made our way to the food section where he picked out 2 bags of chips. So again, I tried to talk him down to only one bag, but he won. I ended up putting him in the cart, since he was a total wild man. I had to put the chips under the cart because he kept taking them out of the back. He ended up picking out some canned peanuts, Cinnamon rolls, mashed potatoes and canned spaghetti, all of his favorite foods. This kid really knows what he wants! Meanwhile he was grabbing the sippy cups from the cart, begging all the passersby to please put something to drink in his new cups,lol. We made our way to the check out, where he tried his best to convince the cashier that she should give him his bag of chips. She asked him if he was starving, so he shook his head yes. She told him that mommy wants him to wait til he gets home to eat his chips, so he then starts shaking his head no, over and over. He gave up on the chips, and took some time to adjust the credit card machine, then decided that he should try to get her to fill up his new sippy cups :) So Brady screamed the entire time we were in the store, other than taking some time in between to tell everyone that passed by "hey". We made it to the car, where I gave him chips, finally! I had to bring him home, put him in the chair and give him more chips, to make his stop screaming, so I could unload groceries. After I got them put up, I brought Brady and the bag of chips to the back room, so I could take some time to sit down and recoop. Well he decided that I wasn't getting his chips fast enough, and turned red faced, stomped his feet and screamed at the top of his lungs! This is all new for me, he has never thrown tantrums like this, especially never threw a tantrum for something in the store. Part of me is thrilled to see him expressing his needs and wants, so well. But a part of me is thinking "OMG, what next,lol" Oh well, I guess this is all a part of it. I just have to think of it as a developmental milestone. Needless to say, it was a very interesting trip to town,and I hope its never that interesting again :)
Anyway, Brady is doing great. His comprehension continues to get better and better. He now answers yes or no questions accurately, he can also answer some other questions, by using physical cues.
Tonight he went over the ball pit, got some balls, handed them to his dad and starting giggling. He was acting like he was going to run away. He wanted his dad to them at him. We have ball wars all the time, and Brady loves it. So he started his own war tonight. This kid has quite an arm on him.Its so great to see him interacting like this.
Well, thats about it for now. I'll post more updates later guys. Brady is sleeping, so gotta get to bed. Nite guys

2008-12-11T21:09:00.002-06:00

Sorry for the delay in posts here these days. My hand and arm are still giving me fits and we still don't know whats wrong, so just bear with me. Brady is doing great. He has been sleeping more lately than he had been in a long time. We went to the Neuro yesterday and got a really good report. The doctor couldn't believe how well Brady was walking now, he was really impressed. We made the decision to turn up the VNS and turn up the strength of the magnet. The doc said that the VNS settings were still very low and the magnet setting also very low. He was not surprised that the magnet didn't stop the seizure back in October. So with the VNS turned up, were going to pick back up decreasing the keppra, until its totally gone. And with the magnet turned up, hopefully it will stop any seizures that he might have in the future. We have an Ortho appt there next week, so were going to swing back by and get the device turned up at that time. Overall, the trip was a good one. Brady was super sweet the entire time we were there, he was a bit manic, but at least it was happy manic. He waved at and smacked his lips at everyone that we passed, he made quite a few new friends. He tried his best to escape from the room we were in at the docs office, but his dad gave him a run for his money,lol. We waited nearly an hour in that little room, I thought Brady was going to tear it slam apart! But we made it out without incident, so it all worked out.
Peyton had a doctors appt last week, Brady has 2 this week and I have had one this week. Peyton and Brady both have appts next week as well and I'm still waiting on the ortho doc to call me back about my hand. So, its been a crazy, busy month here. I'm just hoping things settle down a bit after this month.
Anyways I will let ya know how the upcoming appts go. Hope everyone has a restful night!

2008-12-07T23:04:00.004-06:00

Brady had a good day today, after sleeping all night last night! He and I made a trip to town to pick up groceries and some other items. He walked the entire time we were in one of the stores, but he was all over the place, greeting everyone. I don't think we made it out of the store without him either pick pocketing, high fiving or hugging every person in there,lol. I did decide to buy him a child leash, so that I could actually get some shopping done without him running half way to the other side of the store. I swear its a wonder someone didn't snatch my purse out of the buggy, as many times as I had to abandon it, to retrieve my little monkey. Anyways we went on to the grocery store, but with the leash on this time. He kept it extended out as far as it could go, while he again, greeted everyone there. I best at least 20 people must have told me, "he's a happy boy today",lol. This kid never ceases to amaze me. I had numerous people come up to me and say to Brady that they remembered him from a restaurant, store or some other place. I had to laugh because those people wouldn't have remembered me, had it not been for Brady. I may not be well known around town, but my little guy sure is. Our trips to town tire me out, but its so much fun to watch him interact with everyone, and touch so many hearts along the way. My oldest son hates to go to town, hes a homebody, so usually its just me and Brady. I told Brady when we got in the car, he is my trusty side kick, I can always depend on him to look forward to going to town. I think he likes to shop as much as a girl would,lol. Anyways that's about it for now. You guys don't forget to order your Angelman Calendars, all profit is donated directly to the Angelman Organization! Just scroll down on the right side of the page to Maggie's Blog and you will find the link to order there. Thanks for doing such a jam up job, as usual Erin, Maggie, Ella and Rob!

2008-12-06T23:28:00.004-06:00

Just wanted to post a quick update before I head to bed. Its been a rough week here, Peyton has been sick all week. He's on several meds for a cold and ear infection. Thank goodness Brady is well and actually sleeping tonight, for a change. Brady played his first game of basketball tonight and loved it! We lowered the goal down so that he could put the ball in all by himself, it was to cute. Everything else is running smoothly for the time being, just finished up last minute shopping. I think we just about have things ready for Christmas now,and Brady is already practicing opening :)
Well sorry for the short, boring post, but my hand is killing me and I'm ready for bed. So hope you all get some rest. Will post more soon.

2008-12-03T22:20:00.002-06:00

Well our day started a bit rocky this morning,since I only got about an hours worth of sleep last night, but it turned out to be a very good day. Brady had a dentist apppt this morning, only the second one ever for him. He done amazingly well, even though at one point he turned around in the dental chair, with his feet where his head should have been,lol. The dentist told him he needed to look at the other end :) Brady held his mouth open really good, and only tried to take the dentist tools away a couple of times. Turns out that the spot we were worried about was only a stain, not a cavity, so we were very excited to get a cavity free report! We left there and decided since Brady was still wide awake, we would go to school. Surprisingly, he was in a jolly mood and done so well at school. I was very impressed watching using pictures to request food and drink. He has totally got this picture thing down, so cant wait to get started back with the communication device. His teachers are amazing, they are so good with him, and have such good ideas.
Anyway Brady went to sleep about 7pm tonight, so I'm almost afraid to go to sleep now.I'm sure he will be up in a couple of hours. But I guess I'm gonna lay down for a while and catch few winks while I can. Will post more later. Night guys!

2008-12-02T20:58:00.002-06:00

Yes, I know its been a while since I posted, sorry! Things have been chaotic, but good here. Brady is doing great, other than the fact he never sleeps anymore. I finally got most of my Christmas shopping done, but it has been a different experience trying to shop for Brady this year. He has made a leap forward in his developmental skills and no longer enjoys the baby toys. I did manage to get him some more age appropriate toys, hopefully this will challenge his mind, keep him busy, and keep my house in tact. He has been so destructive these days, he never plays with his toys anymore! I'm looking forward to Christmas, hoping that the new toys will give me some peace! He has already been trying to open presents. The funny thing is, he never tries to open his brothers presents, only his, like he knows which ones are his,lol. We have been missing lots of school these days, due to the fact we never get to sleep! Some nights he may go to bed at 2am, other nights he might not go to sleep and other nights he might wake up ready to go at 2am, its just crazy! Right now he is the only one that seems to be ailment free here. I have a bummed up arm/hand, just praying they don't recommend surgery, his dad has gout again and can barely walk, and his brother has been having ear aches and headaches. He has checked out of school 2 days in a row,and is now in bed asleep, which is very unusual for him. Thank God Brady seems to be dodging all the sickness, I'm keeping my fingers crossed.
Brady has a dentist appt tomorrow, I think he has a small cavity, so not sure how that will go. He has appts on the 3rd,9th,12th and 16th, so its going to be a busy month for us here.
Well my hand is killing me, so sorry to cut it short, but gotta take a break. Will post more later. Hope you all had a fabulous Thanksgiving!!

2008-11-21T23:51:00.002-06:00

Well, since Brady is no where near sleeping, thought I would post a quick update. Things are going good here, Brady seems be feeling especially good/wild tonight. He has been eating like a little piggy lately, so that's a good thing. He seems to be gaining a little weight, so hopefully no more mooning sessions from him anytime soon. We just got through cleaning up after a big party that he threw for me tonight :( I got him out of the bath, which he never wants to do, and when we were coming down the hallway, I was fussing at him. He very plainly told me "I don't care!" I swear this kid never ceases to amaze me.
Were getting ready for his brothers Birthday, going to have a little party tomorrow night, so Brady will really enjoy getting to climb on everyone. I managed to trim his hair tonight, so he no longer looks like a little girl :)
Anyways that's about it for me, have tons to do around here, so I will post more tomorrow, and hopefully some pictures.

Check it out, I lost my first tooth!!!!

2008-11-19T16:07:00.000-06:00