Seizures (mecp2 duplication and mecp3 triplication kids)

I remember thinking on how well Austin was doing because he had not developed seizures yet with his disorder. We were warned many times by Doctors that this was a possibility with Austin. Although he would have longer seizures when he would spike a temp with a bad illness, we thought then it was only febrile seizures. Now we have learned this is part of Austin's every day life. For so many of these kids who have been on multiple meds it is in their everyday life too. I HATE SEIZURES! I hate watching them every time Austin has one and can not imagine the stress it does on his little body. They look so violent and he has absolutely no control when they happen. I think sometimes that if if talk calmly to him or hold his hand, legs or rub his head that it will make them stop sooner. It is 7 or 8 seconds, which may not seem long, but when it can happen lots of times during the day to an 8 yr olds body is horrible. So because of these seizures we recently have added a new seizure med to one that he is already on. Please pray that this will help reduce the intensity, frequency and hopefully stop them! He is so happy even with everything he goes through, which is such a sweet blessing. He loves school and please pray that this winter has has less sick days than expected so he can stay in school! This is a very hard time of year for him so the healthier the better for this little guy! Thanks for your prayers for him and I hope everyone is enjoying this October!

It has been crazy non-stop busy at our house:)

Woosh, there has been a lot going on! I will start with Miss Abigail! She is doing good. She seems to enjoy school and she is going to get a little extra help each week with reading and writing. Hopefully, with the work my mom and I do at home with her and the help at school she will catch on to this! She has soccer each week and loves it. She knows it takes a lot of energy, but I am so proud of her for putting all her effort in it. She also has her first daisy scouts meeting tonight, so I know she is eager to go to that! This weekend we have an encampment with my family's church at the church camp I grew up at. It will be exciting to show her this amazing place! This past Sunday we took her to have her kindergarten picture done and it turned out so sweet!

Mr. Austin's turn! Austin has been having some issues with his port. A port is a device in his body that allows access to administer meds., IV fluids, and anything that helps with blood draw or frequent hospital stays. Each month his port has to be flushed with heparin to keep his line opened so it doesn't clot. So our home health nurses have had trouble with getting any blood return when flushing it. We have tried a medicine a couple of times that helps with clotting. It works for that one time they need it and then when they come to flush it again it doesn't work. Then we went into radiology to have a dye study done to confirm what was happening and the radiologist couldn't even get it to flush. At that time we thought he needed to have a new one put in. Which if they were doing that caused another issue b/c he was scheduled to have dental work done under anesthesia(sp). Well they didn't want to do the dental work if he was going to have his port worked with b/c it is an extreme high risk with infection! Ugg...So then we had to rethink the port, that if we put it in right now will we run into the same problems if he isn't having to use it a lot right now and it puts him at risk of infection with it in....Then we decided to wait to have this done until he was a point to where he needs it again. So now we are back to trying to schedule getting a port removal done, which has been a go around with surgery with it. So praying this gets going very soon!!! While all this was going on I thought they had cancelled his dental surgery. Well it turns out that it is still a go for Wednesday, so we have been VERY busy working out all the details to come together to get all of this to work out! I am praying that they can remove his port after they do the dental work, but while he is still under...so we don't have to make two trips! On top of it all Abby has been fighting different viruses since she started kindergarten and Austin has had a bad trach infection. Then the poor lil man got so back up with his bowels, his tummy was distended. After we had been doing miralax, prunes and suppositories, we decided to give him and enema this weekend. He was so much better he went back to school today. I hope everyone is enjoying this beautiful fall so far!