Thursday, January 22, 2009

Gold Star!

WOW ~ what a busy two days that has been, but we got it all done!! So to recap for you all :
This is how I got him around with his brace on...he was so LONG, but comfy. I had to have him reclined all the way to get him to fit and then I put him in a sleeping bag so his leg didn't get cold with NO pants on, lol. We did it! He ended up in the chair for both days just about all day long and he was so GOOD!
Our first appt was GI at 11:50 in Milwaukee -
He defiantly is a BIG boy...and they are concerned with his weight still 54lbs. A dietitian had come into talk with us about his feedings. We didn't see eye to eye so I just referred her to talk with the new dietitian we are following and have our dietitian get back to us on any changes they felt needed. First she wanted to cut 2 more oz of formula out of his diet.....Danny takes only 16oz (that is less then a can and half of soda) a day worth of formula. He has an intake of 20mg per kilo (I know too much info) of calories with the amount where a "regular" child needs about 80mg per kilo for just a maintenance. I know Danny's is teetering dangerously with the amount (or lack there of) formula and she wanted to decrease it, NO WAY! Obviously Danny isn't gaining weight due to calories but because of some his "global issues" (I hate it when people use that,lol). Then she wanted to take out his liquid multi vitamin for a "Complete" vitamin like Flintstones but I'm not sure we are going to do that either as the "Complete" has Iron in it (Danny's iron levels were through the roof, so he doesn't need anymore of that) and Selenium which we just increased already so adding more might "boil" the pot over. I need to do some more research and check with Dr Kasper on that one. She did have one good point and that was too add Calcium to his diet....not only is he lacking, but due to the precocious puberty his bones need all the help that they can get as they could get brittle. The G-tube site is looking great and we still have some time before Danny needs to have surgery to have it repositioned lower, YAY! So we'll see the GI doc in 6 months.
From GI we went to get his ortho X-rays that were suppose to be scheduled, and of course they weren't. Thankfully the ladies made an exception and got Danny in. Once in the xray room and Danny was on the table they ask ME about the brace, like I know! No one knew if it could or should come off for the me crazy but isn't that why we were down there to do xrays to see if the hip healed so the brace could come off? Some times I wonder, OK MOST of the time I wonder. So they did xrays with the brace on until someone got ahold of the doc and he said nope the brace is suppose to be OFF for the xrays. So we took it off. Danny was in some discomfort at first but seemed to do pretty good. When xrays were done I asked if we should put the brace back on as we weren't seeing the doctor till the next day and they all looked at each other and said I'm not sure, What do you think? Are you kidding me? I put the brace on and we went on to his next appt.
The Endocrine doc....she was a wealth of knowledge....I love knowledge, they can never tell me too much as I am a need to know kind of mom! They told me that yes he is indeed in puberty, which I knew already. They sent us down to lab (only 1 attempt) for more blood test to rule in or out some issues with him going into puberty... is it due to the amount and location of his brain damage or is their some underlying issues too. Then she sent us to have a bone age xray done. This tells you not chronologically how old you are but how old you are by your bone growth. This xray had shown that my 5 year old son is about the same bone grwoth as an 8 year old. Then add the puberty age....which he is at about a 12 year old, head is spinning and it's only the first day, lol. What happened to my 5 year old lil boy? This growing up so fast phrase....well Danny's is taking it to new levels, oh my. We should have the test results back in about 2 weeks.
Unfortunately the Ronald McDonald House was full so Danny and I had to get a hotel room, but it wasn't too bad as it was relatively close to the hospital. We got in and ready for bed right away, then watched movies till 11 last night. Just me and him snuggling :)
Crazy day = Today
First appt of the day was at 9am in the clinic building with ENT. Great reports there! He does still have excess fluid in his right ear (the doc took this vacuum to it to get all the gook out) so I need to keep up with the ear drops a few more days. He said see you in 4-6 month, YAY!
Then we were off to the other side of town to another clinic building with the ortho doc by 10:15. We made it with time to spare. The hip is alot better, whoo, and the ball in now in the socket, woohoo!!!!!! The brace can come off. I was interested in seeing all the new hardware that was installed. He has one plate and about 6 screws holding his right leg together and then the bone graph on the right hip socket. Wow it just amazing me what they can do. I left the brace on for the rest of today till we got home. One kind of weird thing is that both of the incisions this time are: blistering, cauliflowering, or the correct term - Keloid. Which is weird as if you have the trait of keliod scars normally you always do but Danny has never had this issue before but now BOTH incisions from this last surgery are doing it. Once again an enigma??
After this appt we were back on the road to be back to the clinic building by 11:30. I know give me a challenge....3 appt in 3 hours at two different places....We made it!!! And they thought it couldn't be done. With time to spare once again =) Danny's next appt was with Hematology. Just when we can write this specialty off from Avrianna, Danny needs one. Well we did alot of talking and the though was the issues were a flook due to the surgery and his body being stressed so they sent us back down to lab (only 2 attempts) for more blood work to rule out the "off" labs during his hospital stay. Well I was called on the way home that the blood work today was also off so they are doing more tests to see why or what's going on. His PTT level (rate that his blood clots) was still delayed. Which means he can bleed more. I will have those results back next week some time.
From there we had to walk across the hallway to his last appt, Pulmnology, YAY! The doc says Danny looks great and a big kudos to mom for making sure Danny didn't get any respiratory crap will being laid up, big smile. They checked to make sure his Bipap was still working properly and they commented on my engineered mask/head gear that I made for Danny. The ones out on the market just dont work for Danny so I took 3 different one to make Danny's. I pulled out all my tricks to make this work for him as his next step was a trach and I was in no way going to give into that yet.
Well here he is at home and can you see what missing?He did awesome when I took him out of the brace. No cries or whimpers. He did have a frazzled look but then.... here it Danny SMILE :)

I'm sure he still has a long road ahead of him, but he's such a good trooper. A GOLD STAR for my lil man. Thanks for following our journey! Please sign our guestbook or write in our comments to let Danny know you stopped by.

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