Saturday, November 19, 2011

Thank you, Thank you!

This year Austin went through 4 months where the Dr. didn't know what was wrong. He was so sick everyday with fevers and couldn't hardly lift his head. A lot of what he was going through a lot of times is what Dr.'s see at the end of life. Everyone one from his Doctor's, nurses an us were all so worried for him. We had no idea what we were dealing with. When Austin went in to have his surgery for his g-button, because he could no longer gain weight, he ran a fever. I was thankful for that fever b/c it encouraged me to push the dr.'s hard to figure out what was going on with him before we were to be discharged b/c Austin had no quality of life being so sick. Even if it was his disorder going down hill I wanted to know what we were working with. I couldn't put enough words in to THANK YOU to the GI team and Dr. Rothbaum who helped diagnosed his crohn's. Since they have been treating this Austin has gained over 12 lbs, he could hardly gain weight before and he has his life back. He smiles, laughs, and plays! We still have to work with balancing his bowels, but the medicine he's on has changed his life. I am so grateful for dr.'s and medicines that have helped him! I have two of the greatest children and I am forever thankful for them and the blessing they are to me as a mom! I am so thankful this Thanksgiving that we have all made it through another year! Happy Thanksgiving to you all!

Tuesday, October 25, 2011

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!

Monday, October 10, 2011

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 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!

Wednesday, September 14, 2011

Completely Random

We are getting to the end of summer and ready to begin fall. Both kids still enjoy school so much, which is truly a blessing! Abigail received an award for being a peacemaker at school last week. They are trying to get a Daisy Scout troop going which she will be a part of. We also signed her up to learn different soccer drills, which she is very excite about. She is pretty good with a soccer ball. So hopefully she will enjoy this and maybe look into indoor soccer for her this fall if it works out. She LOVES to work on her homework from school, I wonder how long that will last and she has made many new friends. She has a wonderful teacher, which I am very thankful for b/c I know that has to take a lot of patience. She has been sick some with cold/sinus stuff hopefully her immune system will build up and she will stay healthy through the winter months. She's doing good!
Austin absolutely LOVES school. There is such a great team of dedicated people who work with these kids and they are wonderful. I couldn't be more happy about where he is at with school. His favorite is music therapy and music class. He loves music that much! They also do computer programs he watches on the computer that he really enjoys too. He gets lots of therapy throughout the day with the different therapist, which is so good for him. He did battle last week some respiratory issues, dealing with lots of low oxygen sats. and wheezing. So we bumped up his breathing treatments and this week he seems much better. We are not sure if it was from a virus, asthma stuff, or allergies. He is hard to tell which one it was. He right now is managing his crohn's disease and hasn't had to many issues with that. We just have to keep his bowels regular. It will be interesting to see how he does as the ween down again on his steroid that he's on to help his colon. Hopefully all will go well. Really, so far he's doing pretty good and I hope he continues to do really well!

Sunday, August 28, 2011

Busy isn't the right word....

Well the kids first day of school was great. Austin started third grade and Abigail kindergarten. Their teachers are wonderful and they both love it! They started on a Tuesday and that Monday I was in the ER with Austin at Children's because he had blood in his feeding tube and was in a lot of pain. They never could tell us why this was and we went home. Tuesday went well with both kids at school. Wednesday, Abby went to school, but Austin was in such severe pain he had a seizure where he stopped breathing and turned blue...for a few seconds. SCARY! So, Thursday morning we were back at the ER and this time they admitted him b/c he was having a crohn's flare up. We stayed in there until Sunday. Then this past week on Tuesday Abigail ran a fever, so she was home on Wednesday. She was back at school on Thursday and on Friday Austin was in so much pain with his feeding tube that they scheduled an upper GI for him on Friday. It seemed that his feeding tube wasn't in the stomach track but was lodged between his skin and stomach, which explains why he is in so much pain! So we went up to the surgery suite and the literally had to pull very hard to get this out of his stomach...and put in a mickey button (G-tube). I am so happy he's adjusting to the trauma from the other one being pulled out and this one...but he's in so much less pain!!! After all this happened, Abigail has spent the weekend coughing and congested, which she can be a bear....I am ready for this week and a lil break from all this while the kids are back at school! I hope everyone can enjoy their week as well!!!

Friday, August 5, 2011

Shifted Gears

Goodness, it has been a very long time since this blog has been updated. There has been a lot of changes going on! I will start with my sweet lil man. Back in February he started running daily fevers several times a day. He started to not want to have anything to eat, no energy, trouble going to the bathroom, he was so lethargic he wouldn't lift his head up to play. It was heartbreaking b/c we knew this wasn't like him. Several times we would go in for fluids b/c he would be extremely dehydrated. We had a few short admissions, where they would check all kinds of blood work and nothing was showing up...He ended up having an NG tube placed in his nose to help get food into him. Even with this he wasn't any better. Then at the end of May we went to Texas for a medical conference for the MECP2 kids and research which was an incredible experience and we made so many lifetime connections with these families. Austin was sick the entire time we were there....Still didn't know what we were working with. We went in June to have a mickey button placed in his stomach to continue to keep his nutrition up b/c he had lost so much weight and I was determined to not leave the hospital until they knew what was wrong with my son...So we got every set of Dr.'s involved that we could think of to figure this out. Finally after much debate on Dr.'s and lack of communication...someone finally ordered a CT scan of his abdomen. BC his blood was showing some concerning things. It was showing the inflammatory markers in his blood were extremely high witch means that something in his body was inflamed. On the CT scan it confirmed that his colon was enlarged and inflamed and he had an enormous amount of stool in there. Then they started him on a bunch of stuff to help clean him out and ordered a colonoscopy(sp). They did biopsy's and confirmed he had and autoimmune disease called crohn's. They now have him on steroids and an auto immune medicine that has made a huge difference. We were so happy to have an answer and get him treatment to get him well. Well I am happy to say he is doing fantastic! Also we celebrated his 8th birthday this summer! He'll be going to 3rd grade this year!!!

Now Miss Abigail's turn...Well she is doing fantastic! We have spent our summer days with the pool, swim lessons, six flags, friends and just enjoying it! Her biggest adventure coming up is Kindergarten. She will get to attend the same elementary school I went to. She is stoked!! She has all her school supplies and her new backpack and lunch box. I think I will enjoy the break, but can't wait for her to come home and let me know how her days went. One of the friends she made at summer school, was in her swim lesson class and now will be in her kindergarten class and she will have the same teacher from summer school. I couldn't be more proud of her and how well she is doing! Thanks for checking in with us and hope every one's summer has been wonderful as the new school year approaches!

Friday, January 14, 2011

quick update...

Everything is going pretty good. Austin continues to stay for the most part healthy. We have had trouble with the bowel movement area with him recently. I'm trying to have him be somewhat regular or at least going once or twice a week....this is my short term goal for him! He's doing great in school and LOVES being there even if it does wear him out at the end of the day. It's changed his life and I am so excited to see where it takes him!

Sierra has a busy schedule. School, daisies and homework for a first grader are big things! Then she's still doing gymnastics and dance. She is doing good in all areas.

Abby, right now is staying at home with me. We are really pushing letters and numbers with her in hopes to have her ready for kindergarten in the Fall. She is slowly picking up on it and I hope she continues to grow in this. She is your typical sassy 5 yr old that keeps me on my toes!

Have a great January everyone!