So I changed the web site to keep everyone updated. Its alot easier to use and to update and I dont think you even have to log in. it is www.caringbridge.org/visit/aubreyneely you canget updates everytime I put in a entry...its very nice :)

VERY over due

So I'm very behind on my updates for everyone. I guess in a way that's a good thing because not to much has been going on. Her g-tube surgery went very well and it has been great so far. We are able to give her all of her medication right through there so she doesn't have to taste them. We hook her up every night so she can get a continuous feed for 10 hours while she sleeps. I wish this would help her weight out but unfortunately it has not. She cant seem to get over 16lbs and stay there. She has been going up and down between 14-16lbs for months now. We keep increasing the amount of calories in her formula but no luck yet.

We started our 2010 spending the day in children's. She was going through these sleeping spells where she would not wake up sometimes for 16 hours. There was nothing we could do to wake her up either. I described it as her being in a coma. It is very bazaar and the doctors didn't seem to concerned for now. They told us just to let her sleep and to tube feed her if she wont wake up to eat. The spells are decreasing so that's a good sign.

She is still not able to take solid food but I'm hoping when we go to have her tube changed in a few weeks we can schedule another swallow study to see if she can now handle it and not aspirate. All of her therapists a very happy with how she is progressing. She is really starting to look around and focus on objects and people. She can hold onto toys and is starting to reach for things. All in all her seizures have stopped and that is really helping her development so I pray we continue on this road. I promise I will not let MONTHS go by again before the next post : )

surgery

Well I kinda knew this day was going to come sooner or later. The doctors have been discussing a feeding tube for some time now but since thing were going so well I thought we dodged a bullet. Well at our apt. last week they told us they were happy with how well she has been doing lately but they still feel the need to put in a feeding tube. The reasoning is they feel she needs a little extra help to start putting weight on. She does drink a lot and often but the amount of energy it takes her to drink 1 bottle she pretty much burns all of the calories shes getting just to drink it. They feel while she is stable now it would be a good time to do it so if she does ever get sick they wouldn't need to do emergency surgery. When she does get sick we usually have to go to the hospital to get a IV so she can stay hydrated because she doesn't eat. With the tube in we will no longer have to do that. They also want to do the surgery sooner than later because the later in the year it gets as the weather gets colder the more viruses and bugs come out. They do not want her recovering in the hospital full of sick kids with the flu, strep, colds etc....


Of course no one wants their child to have to go through any kind of surgery. It is a really tough time and something that is going to take a lot of getting use to, but I know she is strong and we will be strong with her. I know for me when I heard the words "feeding tube" I thought the worst. I thought that would be the only way she could eat and she would never take a bottle again. After getting all of the information and doing a lot of research I have been reassured. She can still drink from her bottle as much as she wants. She can still do all the things she does on a regular day. It will just be there "just in case" and to give her a little extra help and relief. They seem to think she will really thrive once this is done and that is such great news to hear. It has taken a while but I am starting to really feel good abut this decision. I don't want to be sad about this and I don't want anyone else to be either. Whatever is best for her health and to help her grow and develop and thrive I am excited about.

The surgery is scheduled for this Wednesday July 29Th. It is typically a 2 day recovery so we should be home Friday or Saturday. I will try to post after to update how things are going. Keep her in your prayers and I will write soon!!

some news

This might be a short update because there is a little monster upstairs who is about to wake up :) Thinks have been very busy lately with our little Aubrey. A highlight of this month was taking the kids to get their pictures taken. We went to a studio near our house called Portraits by Sharon. The photographer Sharon King was so patient and just wonderful! I'm going to post a few pictures of Aubrey on here Sharon was so kind to share with us. They are beautiful and I don't think that's just my bias opinion. I highly recommend her. http://www.portraitsbysharonphotography.com/

In medical updates. We had a visit with Aubreys neurologist where things went just ok. He head size has not grown the last few months and they said that means her brain is not growing. Her seizures are still not completely under control either. They are concerned her brain is not going to be able to keep up with what her body needs to be doing and usually the first thing with her condition to go is swallowing. We then went to her GI doctor to have a check up and mention what the neuro docs said about the swallowing. She sced. some tests. Long story short.....she has severe reflux and her GI doc thinks she will benefit from surgery and she aspirates all solid foods so she is going to have to get surgery for a feeding tube. They seem to really think it will help her gain weigh and she will really thrive from it. We don't have a date set up yet I'm just waiting to see her GI doc one more time so I will try to keep updates but its getting alot harder. Please say all the prayers you can

Pirates game and medical updates

Yesterday was the MITO night at PNC Park and what a amazing turn out. We had 180 people come out to support Aubrey and we raised a grand total of $530!! It was such a beautiful day for a ball game and I am so glad everyone has such a great time.

Aubrey had a doctors appt. Friday with my favorite doctor ever Dr. Amy Goldstein who is a specialist in mitochondrial diseases. Aubrey has been doing a lot of jerking with her arms and legs lately and doing these movements as if she is being startled. They come in clusters several times a day. Dr.Goldstein let me know that movement is a Myoclonic seizure and told me we now need to change her seizure medication to get these under control. Her new medication Keppra will take 4 weeks to introduce it all to her because we have to go in stages. She is pretty confident this will take care of this particular kind of seizure.

We discussed Aubreys progress and how well she has been doing with all of her therapists and physical activities. She was very happy with her muscle tone and the strength she is building up. One thing she did want to prepare us for because it is very common in PDCD children is stroke like episodes. She said all kids with pdcd will go through this where they will lose all function in one side of there body. When this happens they try medication to restore function then they will have to do a MRI to check for any lesions on the brain. She said it is scary but will be treatable.

Amazing Aubrey

Its been a while since the last post and Aubrey is taking off! It is going to be a short one but full of great news. The ketogenic diet has been the best thing for Aubrey and I can not believe all of the improvements. Before she could only handle about 10 minutes of therapy and be exhausted. She is now doing more than I ever thought! She can roll over all by herself both ways now. She is using her legs more jumping and kicking. She sings all day long and makes all kinds of noises. She can laugh every once in a while...it is so cute. She is looking around at everything and reaching for toys. She is getting better at sitting with assistance and her therapists think she'll sit alone in no time.

In just a month for her to make all of those accomplishments is more than we could have ever asked for. I hope to post more frequently from now on.

The latest on Aubs

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