It was a struggle to get our Buddy in school but we managed it and he has been going until 11am everyday.Unfortunately he did get sick after 4 days of school so he did miss a few. He is struggling a little at school but we are working with them to do lots of extra activities to help him.We are also doing extra writing,letters and numbers at home too.Our Buddy is learning words and can read a few too.He is really trying very hard and wants to do his best.
The second week of school he came home with this!!!!!
We are so proud of you Buddy!!
Onto the medical stuff :
Nuerology:
Broc is still having some ballance issues.His Neuro is saying that they are illness related.So we might have an inclination when Broc is about to get a virus or something. She also agrees with the Neuro geneticist that he does have mito dysfunction due to his chromosome disorder.All his labs came back negative for a primary mito disorder.She has recommended taking some supplements for we are yet to find that a child can take. Either liquid or chewables.She also wants to start him on some calming meds to see if that will minimise on the falling so that he can slow down more.
G.I. :
So far the increase in meds have helped with his stomach migraines and gastroparesis.He does get tummy but not nearly as often as he used to.His appetite as also increased a little too.I don't want it to increase too much.
Heart and lungs:
Broc is still taking naps for 2-3 hours about 3 times a week.We are not sure how that will factor into his schooling.From next week he will be going until after lunch which is only 25mins longer than he was going.Our ultimate goal is to have him go for a full day but he doesn't have the stamina for that right now. He also had the croup virus a week ago but we got through that with lots of nebulizer treatments and rest.
Immunology :
Broc continues to have low grade fevers.Dr Nelson has been great about communication.We call him anytime he gets a fever over 101F.We see his ped and if the virus continues for longer than a week we see Dr Nelson.
ENT:
His ears continue to drain at night.When they put in his tubes in 2011 they put in T-tubes so they can stay in longer than regular ear tubes.He goes for a check-up every 6 months.
Vascular:
He is still doing great.He has great pulses.No need to hunt for them.He has very minimal leg pain and that is only if he over does it.It is the new blood circulation getting used to the new artery.He is still walking on hs toe with his right leg.He has not started P.T. yet as his ped wants to wait till his restrictions have been lifted.His scar on his leg is really not a wonerful sight so we are doing silicone therapy using patches on it at night.We are hoping that it will come down and look less angry.
He is still being very good as regards to his restrictions.When we do go outside we have to keep reminding him of no running or climbing.
For some strange reason his eyes have improved so he doesn't need his glasses anymore.He only needs to wear sunglasses when going outside.
Wow... I did warn you that it may be a long one. I think that is all the updates for now. If anyone has any questions please feel free to ask.
Thank you for all your love and support.
Praying that things get better for Broc. He sure has had a rough go here lately.
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