Angelman Syndrome, Life as an Angel

Wednesday, January 18, 2012

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!

posted by angelwings @ 1:04 AM 0 comments

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!

posted by angelwings @ 12:44 AM 0 comments

Saturday, December 10, 2011

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!

posted by angelwings @ 2:32 AM 0 comments

Thursday, November 03, 2011

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!!!!!!

posted by angelwings @ 1:22 AM 2 comments

Friday, October 28, 2011

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!!!!

posted by angelwings @ 1:22 AM 2 comments

Tuesday, August 30, 2011

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!

posted by angelwings @ 2:19 PM 0 comments

Monday, August 22, 2011

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!!

posted by angelwings @ 12:50 AM 0 comments

Wednesday, August 10, 2011

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!

posted by angelwings @ 1:58 AM 2 comments

Wednesday, August 03, 2011

Quick Update

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 :)

posted by angelwings @ 11:27 PM 0 comments

Tuesday, August 02, 2011

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!

posted by angelwings @ 1:10 AM 0 comments

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!

posted by angelwings @ 12:56 AM 0 comments

Friday, July 29, 2011

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!

posted by angelwings @ 11:35 PM 0 comments

Friday, July 15, 2011

Vote for FAST!

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!

posted by angelwings @ 12:12 AM 0 comments

Thursday, July 14, 2011

Were back!

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!!

posted by angelwings @ 2:07 AM 0 comments

Monday, August 16, 2010

posted by angelwings @ 7:03 AM 0 comments

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". . .

posted by angelwings @ 6:43 AM 3 comments

Wednesday, August 11, 2010

posted by angelwings @ 2:03 PM 0 comments

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.

posted by angelwings @ 1:51 PM 0 comments

Tuesday, July 20, 2010

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!

posted by angelwings @ 9:35 PM 0 comments

Friday, May 21, 2010

Brady Birthday shopping and AS Walk

posted by angelwings @ 4:05 PM 0 comments

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 :) :)

posted by angelwings @ 3:41 PM 0 comments

Tuesday, May 11, 2010

Brady channel surfing and taking breathing treatment

posted by angelwings @ 8:20 PM 1 comments

Sunday, May 09, 2010

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!!!!!!!!!!

posted by angelwings @ 12:44 AM 0 comments

Thursday, April 22, 2010

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.

posted by angelwings @ 12:31 PM 1 comments

Saturday, March 27, 2010

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!

posted by angelwings @ 11:45 PM 1 comments

Tuesday, March 09, 2010

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!

posted by angelwings @ 11:08 PM 0 comments

Thursday, February 25, 2010

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.

posted by angelwings @ 3:38 AM 1 comments

Wednesday, February 17, 2010

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!

posted by angelwings @ 12:13 AM 0 comments

Monday, February 08, 2010

Update

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.

posted by angelwings @ 3:43 PM 0 comments

Saturday, January 30, 2010

Update

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!

posted by angelwings @ 12:05 AM 0 comments

What is Angelman Syndrome?

About Brady

Read Brady's Story Here

I am a happy, healthy 9yr old little boy. I have Angelman Syndrome which makes me even more special. I bring joy to all those who meet me. Just because I am unable to speak, does not mean that I dont have lots to say; I make that very clear to mommy and daddy everyday!

See my complete profile

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Okay, just time for one more post! I was sifting t...
Well just had a moment and thought I would update....
Well we are back!! Lots of exciting things happeni...
Hello everyone!!!! First let me just apologize for...
Hello All!!!! Now that life has slowed down a bit,...
Well its been a little while since we updated, so ...
Well things are going great here!! brady is back t...
Hey guys! Im proud to report that things have been...
Quick Update
I know that some people will not understand why I ...