Adjusting to Life

Adjusting to a new normal takes plenty of time. Sorry I have not been keeping up as much as I should.

Yesterday was a really rough day for me. Not only was it a long day with 4 appointments but it was a trying day as well.

First stop was the dentist - this was Zachary's 2nd trip to the dentist. The first one 6 months ago he completely shut down and didn't regain himself until we were out of the office. This time they sent him back into another waiting area that he could hear and see all that was going on, I was prepared for a disaster. He shut down, the hygienist came and got us (it was the same one as before) and he warmed up a bit. She took us into a room instead of being in the open (they have an area that is chair after chair of kids getting their teeth cleaned) She told me it was because of his issues they will continue to put him in a room so we don't have such sever shut downs. Zach was such a big boy - he sat in the chair all by himself, he let Amy clean his teeth, he had no shut downs! This is huge for him - I was so very proud!

Then we came home and his new SLP came to the house for ST. We met her on Friday for an evaluation and I have to say I was less then impressed. At first I liked her and then she opened her mouth about him having a feeding tube and it was down hill from there. She told me she didn't "like when parents choose to place g-tubes and take the easy way out". No placement is elective - this isn't plastic surgery -- I didn't chose this for my son - it chose us and if he didn't have it he may end up dead. Well anyway I thought I'll give her one chance and see with a therapy session --- it was awful! She told me there is no such thing as a "true apraxic child" and that the only true apraxics are stroke victims. -- That isn't even true because what a stroke victim has is aphasia. She went on to say many other things that really rubbed me the wrong way. Needless to say I called EI today and switched back to our old therapy place.

Then we headed out the door to the GI where we got a little bit of good news --- Zach has gained some weight (2lbs) this is HUGE in 6 weeks 2 lbs he has never gained that much in such a short period of time. The bad news came as the Dr admitted he and his colleagues may be stupid because they have yet to find out what is wrong with Zachary. He believes that Zach's tube may be a life long thing now. I have to say as Kori told me "that is a mighty big pill to swallow" Yep she is right. Doug and I knew this would be long term but life long wasn't on our minds.

Even the Dr will tell you Zachary is a completely different child since his tube was placed. He is the most normal he has ever been his whole life. He said at this point we don't want to chance things getting worse again, if we had not placed the tube he believes Zach may have ended up dead. He is wondering a whole lot of things...maybe this is sever food allergy related, maybe it is a metabolic disorder we tested for and the test came back with the wrong info, maybe we haven't tested for something yet because it hasn't come to mind, maybe Zach is the first person to have whatever it is he has. Our GI was happy to hear we are still following up with the geneticist, he is going to have a talk with her himself to follow up and see what they can brainstorm together.

After our stop with GI our wonderful dietitian came in. She had the look of amazement on her face as she watched Zach for the first time ever playing around the room. She just couldn't believe this is the same kid she has been working with for 9 months. We didn't need to do much - no extra feeds or calories because he is gaining. Just learning to bolus without our pump to see if he can tolerate it. I also have to add some bolus water because he is not getting his fluids since his oral intake is down.

So see --- long day really not too bad of a day but not as good as it could be.