Anna is doing better. She is finally on the growth chart. Thanks to the Gtube. But it comes with other issues also. She has been throwing up every day for few months now. Her GI doctor was unsuare about the reason. But finally we figured out the possible reason. When ever she cry she is swallowing a lot of air. Since her airway is very narrow, she is not able to push out the air that goes in and she swallows it. So it makes her tummy full and make her throw up. What we do now is vent(take gas out through gtube) her every time she cry, also we are venting her every 3 hours at night. It seems to be helping her, her throwing up got down. Also we changed her calorie supplement from Duocal to Poycose. Duocal seems to be too hard on her tummy. But she was gaining good weight with Duocal. Polycose has less calories, so her weight gain for this month is not good. We are trying to find out a way to have her more calories with less volume of milk. For whatever reason her tummy can hold only very small amount of food at a time. So even with Gtube it is very difficult to fill her with calories. The advantage with Gtube is, I don't have to push her eat. Before that was my big concern and stress. Now even if she don't eat I can put it through there.
She started walking. Yay!! She can walk now holding with her one hand on my hand. Hopefully within few months she will be able to walk on her own...
Skin vise Anna's wounds were slow healing. And thus she got so many wounds on her arms, bottom and leg. And it has been painful for her, she was not even letting us touch her body before two weeks. I finally thought to start her Aurvedic treatment again. Believe me the same day I could see the difference. Her wounds started healing. It is been two weeks I started it, her arms are healed mostly. And the skin looks nice and healthy. Her bottom and legs are catching up. She has been on Ayurvedic treatment from when she was just 4 months old. Remember I wrote about her flare up when she was only 2 months old. After that she never got a flare up like this. I always thought like she seems to be doing better for her diagonosis. Now I am sure that it was because of the Ayurvedic medicines. We stopped the treatment when she got the recurrent eye abrasions and she got hospitalized for her gtube surgery. Now I know for sure that this treatment was helping her. Also, we figured out the reason and how to prevent corneal abrasions. I will write about that in another post.
Ayurveda is an Indian alternative medicine which has been practicing from ancient years. All the medicines are made out of herbs. The treatment we are taking is not to treat the EB. But it focuses on the problems caused by EB. For example, wound healing or anemia etc. If any of you would like to know more about the treatment we are taking, please send me an email. I am happy to give you the details. One wound less on a baby's body means that much less pain he need to go through. It is so unfair for these babies to go through this kind of worst disease... How much pain they need to suffer from the day they are born.. These precious babies need to go through tremendous pain, from the usual things we all are taking for granted, like eating to playing to walking... Isn't there any one out there to find out a cure for this stupid disease..
We also started using a cream called Alwin, which I heard from another parent. We got some samples from the company and started applying on her from last week. One of her main problem is itching. When an wound start to heal, it will itch. Then she will scratch it and reopen it. I am applying Alwin cream on some specific spots to test it. I am seeing some improvement with her itching. Anna likes it. she don't have any problem even if I put the cream in the middle of the night:-) I will keep you all posted how it goes with this cream..
Her breathing is the worst thing now. She will be doing okey for few weeks and suddenly she will get heavy stridors. We are continuing to give mebulizer treatments, pulmicort and saline solution twice a day. Praying hard to God to hold it on control.
Anna is praying so much to Jesus now. Whenever we change her dressings or diaper, she will hold her fingers crossed looking at Jesus picture.And she will ask me to keep praying to not have pain. Oh my God... It is the saddest thing to see. If you see it your eyes will fill for sure. She just turned two years. Even I don't have this much belief. I tell God, can't You please look at her small hands which is extended towards You, seeing this small girl's belief, can't You just cure her. She just love her Jesus. She believe that Jesus is curing her. Whenever I say, oh Anna, this boo boo is healed, she will say, Jesus made it heal. :-) Anna is just an amazing little girl. I am so proud of her. Each day she is making me amazed about her.
Will update you all when I find some time to blog again :-)
Cheers
Anna's mommy.
