This disease is so frustrating! It is always 2 steps forward, 1 step back. Alex was doing so well for a while. Ever since Disney he has started to cry about his belly hurting again. It has continued to get worse. We thought maybe he was just really constipated again, but after an xray came back normal, we decided to pull out bananas. We noticed his complaints were worse when eating a lot of bananas. So we are now down to 3 foods. We are praying that we can stabilize before going to Cincinnati next month. If he is not doing well, we will not be given the go ahead for food trials.

Pott​y training is still going great. Since the first day we have never had more then one accident and we have had numerous days with no accidents. Alex is wearing undies all the time now (except when sleeping). We are really proud of him.

Ali

Big news... Alex is potty trained!!!! It happened pretty quickly. We decided it was time on Friday. I put him in underwear and Friday and Saturday were a little rough. Since Sunday he has never had more then one accident in a day. he is having some stomach problems so "pooping" has been our problem. He hasn't had a wet accident since Saturday. We just wanted to share our good news.

We also wanted to ask you to pray for our friends. We have 3 good friends with the same condition as Alex who are all hospitalise​d right now. Please pray for them to start to feel better and come home soon.

Love,

A​li

Hi Everyone!

As most of you know we spent last week in Disney World. We had such an incredible time. Alex loved the characters adn rode all the rides and saw many shows. As he told us many times, his favorite ride was the monorail!!! He loved the dumbo ride, the jungle cruise, the safari, the train. Pretty much all of it. He keeps telling everyone that he was brave because he went in the haunted mansion. Overall, it was just a really fun time. He loved being with Grandpa, Mimi, PopPop, Aunt Jenn Jenn, Uncle Jimmy and Skye Skye. So thanks Grandpa for the best vacation we've had in a while. It sure beats Cincinnati!​
We got home Sunday and Alex and I both have colds. Alex has a fever, but seems okay otherwise. We had a great therapy evaluation on Monday. Alex's fine motor skills and strength have made huge improvement​s since his feeding tube. He still has some stuff he needs to work on. Mostly continuing to improve his overall strength, his confidence in gross motor skills and most importantly his hand strength. His hand strength is still pretty far behind, but hopefully that will improve once we are working on it. Alex was so happy to see Miss Elizabeth. He loves therapy. He has already asked me a few times when he can go back. We are only going to go once a month, because we have seen so much improvement.

Alex had his weight check yesterday. He still hasn't gotten any taller so we are keeping our fingers crossed. He also lost eight tenths of a lb in the last month, but we are hoping his weight gain will pick up again. We won't have an official weight check until we get up to Cincinnati in November. At that point we'll let them decide what they want to do. They will also determine at that point whether they want to do the muscle biopsy and also whether we can start to trial foods again.

We are excited for our trip to Cincinnati. We are flying out with our good friends Tricia and Andrew. Andrew has the same disorder as Alex and has an appt the same day. We will also meet up with our friends Janette and Monty out there.

Overa​ll, things continue to go well. As soon as I have our pictures back I will upload a few.

Ali