So after over a month of waiting, and back and forth phone calls, and feeling just a little bit ignored. We have some answers to some of our questions on Payton's endoscopy results. The ring like growth in her esophagus is not vascular! Praise God that was what we were hoping for. She will have one more test this coming Monday just to take another look at it. Monday morning she has an upper GI study (a swallow study) and they will just watch her eat under an x ray essentially. As long as that all looks good, which the Dr is fairly certain it will, they will move on to the next steps. That will mean that about 2 weeks from Monday they will do a dilation. It is a fairly simple procedure. They will put the same type of camera down her throat that they used for the endoscopy but there will be a balloon on the end of it and they will inflate that to stretch out that portion of her throat to the same size as the rest. They may have to repeat this one or two more times to get it to stay permanently but it is still better than the risks associate with having it surgically fixed. We are also on the waiting list, typically about 6 weeks, to see the motility specialist at Children's and see if he can answer some of the other questions about Payton's digestion.
In other news spring football has ended...with a 4-1 record. Proud of our boys, and sad too since this is the last season they will all play together. From this point forward they will each play for their respect middle and high schools. Coach Ryan had a hard time not crying saying goodbye to some of the kids. He really loved coaching them, he wishes he had the time to coach a team of younger kids next year but college just won't allow that right now. Robert did great and only struggled with the confidence he needed to get out there and play like a champ once. We realized after the first couple of games that what happened to him last fall was definetly more on his mind and still having much more effect than we realized. We made the decision to put him in therapy and WOW! It has made such a difference. He really likes the therapist and comes out of there feeling such a relief and loving that he has someone that he can share with and really just talk to without any judgement. I am so happy that this is a positive experience for him. The girls are counting down the days to the end of the school year, and so is Ryan :). I can't believe this school year is already over, it went so fast. Katie is in archery club and still rocking it in choir. She went out for the solo again but didn't get it this time, and she is OK with that, she says everyone should get the opportunity to get the solo. Andie is the most hormonal 10 year old I have ever seen. Everything is filled with drama in her little life already. Not sure what I am going to do when she is a teenager. Lord give me strength! I can't believe that next year Ian will be a Jr high student. That just leaves Andie and Payton in elementary school. He is really wanting to play football this fall and I hope he gets to!
We are still working on fundraising to get to Chicago this summer for the Aicardi conference. One of the Dr's who is studying Aicardi syndrome contacted Payton's preschool teacher when he found out she had an Aicardi student to ask if we would be willing to talk to him. He will be at the conference this year and it would be an amazing opportunity for us to sit and talk with him without some of the expenses of cross country travel to get to him at UCLA. Please help us get there if you can. Whether you can help with a donation or just by sharing our fundraising page it all helps.
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