We are finally out of the hospital after a 2 week stay and then another 4 day stay. Aubrey is adjusting very well to the ketogenic diet. It seems she has more energy and is really starting to get some strength in her neck to hold her head up. They added seizure medication to her already long list of daily meds but they seem to be under control.
We recently had a visit with a GI doctor just to evaluate her eating and see how she has been since our discharge. They want her to have monthly weight checks since her weight went down a bit. She is now 13lbs 9oz. They raised the dose of her reflux medication to see if that will help her vomiting so lets hope for that. When she throws up her biCarb levels in her blood go down and that causes nausea witch makes her even more sick and it is just a downward spiral. Bicarbonate is a chemical (buffer) that keeps the pH of blood from becoming too acidic or too basic so its a big deal if it goes down.
Since Aubrey can not move around a lot she spends a lot of time on her back witch has caused her head to develop a flat spot in the back. She just got approved for a helmet witch she has to wear to help reshape and round out that area. We will be getting fitted for that on Friday and will have to go back every 2 weeks to get adjustments made.
If anyone is interested in reading more about Aubreys diagnosis and finding information ill put some links up that will direct you to info. If anyone is interested in helping out to find a cure go to http://apps.facebook.com/causes/fundraising_pledges/48000?m=30de23d9 and donate to my pledge to raise $500 to the United Mitochondrial Disease Foundation (UMDF). The UMDF is located here in pittsburgh and we are getting involved in setting up fundraisers in the near future so keep a look out on here. The UMDF is hosting a MITO night at PNC park May 2, 2009 and the proceeds for to finding a cure. Visit http://www.umdf.org/ for more info or send me a e-mail and I will get you info.
http://emedicine.medscape.com/article/948360-overview overview of PDCD
We recently had a visit with a GI doctor just to evaluate her eating and see how she has been since our discharge. They want her to have monthly weight checks since her weight went down a bit. She is now 13lbs 9oz. They raised the dose of her reflux medication to see if that will help her vomiting so lets hope for that. When she throws up her biCarb levels in her blood go down and that causes nausea witch makes her even more sick and it is just a downward spiral. Bicarbonate is a chemical (buffer) that keeps the pH of blood from becoming too acidic or too basic so its a big deal if it goes down.
Since Aubrey can not move around a lot she spends a lot of time on her back witch has caused her head to develop a flat spot in the back. She just got approved for a helmet witch she has to wear to help reshape and round out that area. We will be getting fitted for that on Friday and will have to go back every 2 weeks to get adjustments made.
If anyone is interested in reading more about Aubreys diagnosis and finding information ill put some links up that will direct you to info. If anyone is interested in helping out to find a cure go to http://apps.facebook.com/causes/fundraising_pledges/48000?m=30de23d9 and donate to my pledge to raise $500 to the United Mitochondrial Disease Foundation (UMDF). The UMDF is located here in pittsburgh and we are getting involved in setting up fundraisers in the near future so keep a look out on here. The UMDF is hosting a MITO night at PNC park May 2, 2009 and the proceeds for to finding a cure. Visit http://www.umdf.org/ for more info or send me a e-mail and I will get you info.
http://emedicine.medscape.com/article/948360-overview overview of PDCD
hey baby girl this is granma neely, god is hearing and answer our prayers, u hang in there and get stronger everyday so papy and grandma and jodi and aunt misty can come up and get you and bring yu down home with us for a couple of days, jodi wants you strong enough to come down for her birthday sat. 21, from 6.00 to 8.00 ay artnesville school. we love you our little angel, your pitcure is beautiful, as you, love grandma and pappy neely. jodi marie, aunt misty
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