It is official. Zack has a new record. Today marks 10 weeks and 3 days since his last surgery. While that may not mean much to you, in our house this is a big deal. You see, Zack has not been incident free this long in over two years. Two Years! Cross your fingers, knock on wood or do whatever it is you do to keep the good luck going. Zack’s surgeon is worried that if I speak these words it will jinx us. Doctors are a curious bunch, but we love them just the same. I digress…The happy dancing may now commence!
While we are excited that Zack’s stoma is actually holding for now, we are in the middle of making plans to head back to Cincinnati in the next few weeks. There was an issue with Zack’s motility testing in August which made it incomplete and invalid. We were disappointed because that means Zack needs to have the test redone. That means another admission and another sedation and another yucky test. Z was not happy to hear that. His response made us laugh. He said that the doctors should have to take the test for him and have a tube in their bums. I guess that seems fair.
A few good things have come out of this new development. Our doctors and surgeons were finally able to find a time to conference and come up with one unified plan for Zack. Jim and I appreciate this immensely because, before this conference, each set of doctors had different ideas of what we should do next. As parents, this was tough because we trust each of them completely, but they were not on the same page. The decisions we had to make were so big that we (I) felt a bit overwhelmed. It is not easy to make hard decisions without feeling at peace about them. Now that they are all in agreement on the next steps, we feel much more confident in the way ahead.
While we wait to leave for Cincinnati, Zack has a lot of other things going on. We are working hard with his dietitian and his GI doctor to get his g-tube feeds figured out. Zack has started to gain back his weight now that he is actually getting enough calories each day. Who knew?
Zack’s IEP team is working hard to get some much-needed testing accomplished. This would have been done last year if Zack’s medical condition would have allowed him to actually be in school for more than half the year.
His Developmental Pediatrician has been working hard to get Zack’s ADHD medication figured out to help him focus better at school. Both Z’s school and Developmental Pediatrician are working hard to get documentation together to help Zack qualify for assistive technology. In English, they are trying to get Zack a computer for school so that he can type his work rather than write it out by hand. While he “can” write legibly, it is a painfully slow and frustrating process (for Zack) which is unlikely to improve. We are hopeful that he will qualify for this soon and believe that it will be a great tool to help him be successful in school. Believe me, it is necessary!
We are now back to the waiting game. Waiting to see when we leave for Ohio. Waiting to see if Zack’s stoma continues to cooperate (fingers crossed). Waiting on school stuff. It may sound like a lot of waiting, but waiting means we are at home and home is good!
I leave you with Zack’s obligatory “First Day of Second Grade” picture. Most of the mothers I know have cute little signs for their children to hold on the first day of school indicating what grade they are in, how old they are, what they want to be when they grow up, etc. Not only are they cute and organized, they post these pictures on the actual first day of school. Yes, well…tomorrow is the fourth week of school. Zack is not holding a sign, BUT I took the picture on the first day and he is pretty cute. Does that count?
Since I am coming clean and confessing my good mom picture failure, you should know that this is my son Jake’s senior year. I have a really cute photo of Jake on his first day of kindergarten that I wanted to post next to his first day of twelfth-grade photo. Yeah, about that. Can’t find it. I’ve actually been looking. It is causing me much distress. Sigh. Here is his “First Last Day of School” photo.Whew. I am glad I got that off my mind. I hope I have not scarred them for life, at least not over this.
Hug your babies!