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!!!
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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!