Avery was scheduled for his yearly visit with his pedi. yesterday. Honestly, I was thinking I should cancel b/c of all the snow and my work schedule is just so crazy. Plus, just as Isaiah was getting off to school the elevator lift was frozen. So I thought there was no way I could go. We ended up getting it working and off to school he went and off to the pedi. for us. After being stuck in about 20 traffic jams we made it there just on time. So I guess it was meant to be!!!!!!
Right away his pedi. noticed how great Avery looked. He really doesn't see Avery much b/c if he is sick, he usually ends up inpatient. We only make it in once in awhile. Luckily it was booked for an hr. b/c we used that and more. I really like his dr. b/c he is very thorough. He literally starts from head to toe with every body system and adds in schooling and palliative care stuff. So you can imagine the visits take awhile.
I will start with the good stuff. Again he thought Avery looked and sounded really great. Best he ever heard his lungs. YAY!! He ordered a slew of labs b/c Avey has not had them done since Thanksgiving. Got all the results today and everything looks incredible. Wooohooo. His hemoglobin is better than mine and all his electrolytes and liver look perfect. I was most impressed with his IGg level (checks his immune system). It appears the weekly sub q IVIG he is getting is working wonders. His levels were over 850 which is something we have not seen in a long time. This is why he has had such a long hiatus from the hospital b.c his immune system is doing to well. And it looks like his TPN is doing nothing but good for him which is great after being on it full time for over 2 yrs. Another Woooohooo!!!!!!!
Onto the not so good stuff....One noticeable thing is Avery's back, poor kid almost looks like the Hunchback of Norte Dame :) He is rotated, has severe scoliosis and kyphosis. Basically his back and spine are a hot mess. So sitting for the household is imperative. He currently sits in a carseat which totally sucks. He has a wheelchair but it is just not comfortable for him. So our first priority is to get a comfortable seating system approved throug his insurance. May be difficult but his dr. is all for it.
I was concerned about Avery's hips b/c his right leg just doesn't look right to me. He is rotated and doesn't like it when you move him too much. A hip xray showed hip dysplagia on the right side. Sucky, Sucky. So we have to go back to see ortho. and the CP clinic. Also on the xray, there appears to be some litle square thing somewhere on his spine. I thought it might be the tooth that we never found, lol. but it could be a big calcium deposit.
Now onto the big one......During the appt. his dr. noticed what looked like multiple seizures. They were tonic movements with him spacing out for about 20secs. Honestly, the kid does this so often I just chalked it up to his weird dystonic movements. I am not surprised he is having seizures b/c with Leigh's disease (progression of the mito into the brain) so many things are affected. Well b/c of what he was seeing, it was time for a 24-48hs. EEG. Yay, :( The pedi. called our neuro/mito dr. and she asked if he needed to go to the ER and thankfully he said no. He feels that they are not bugging him a great deal but it still needs to be investigated. So we are likely going inpatient next week for the EEG.
Off course we ended the visit with talking about advance directives. I assured him that we have made all our decision over the Fall concerning Avery. I like that he checks in with us about it. It's also great that we are on the same page in terms of Avery's care and needs. He is also in agreement that Avery continue to be home schooled as it is working out so well for him and his immune system.
I know its mean but I equate Avery to a used car. You can take it into the shop and you will find a million things wrong with it but you cannot afford to fix it all. So you prioritize and fix the most important things that will keep your car running. All in all it was a good appt. and we are trying to all do what is best for him. It also shows what incredible care he gets a home too.
2 comments:
Its nice to know that a regular pediatrician is doing a good job advocating for your child.
We do not visit ours all the regularly for Kennedy, but everytime we go in with any of the kids, he always asks how she is doing and always tells us about the dr reports he has read...so it is nice knowing that even if he isnt seeing her, he knows and follows regularly what is going on.
Good luck with Avery and the EEG...when Kennedy was first diagnosed with seizures at 5 I first overlooked them too because of her chorea. I still have a hard time distinguishing new seizures or movement disorder.
Good luck!
Sounds like a great doctor. Good work with your new job/project by the way! You'll be great at it :)
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