A long due update...

               It is been a long time I have updated the blog. So many things happened within this time and got really really busy. Also I spends lot of time talking with other EB parents at the EB forum "Epidermolysis Bullosa Lounge" on Facebook. If you or someone you know have EB and don't know about this forum, please join there. It is very helpful. So many people going through same situation. There will be always someone to answer your questions.

From our side quite a lot of things to update. Anna got her trach in January 2013. It was a very hard adjustment for us to get used with the trach. But now we are fine. She is doing good with the trach. Except, she don't like it getting changed every 3 weeks. She is very anxious about it. We have to fight with her to do it. Another drawback of trach is she gets sick very often. Someone just has to pass by coughing, she will get it. Before trach she never got any cold. This year itself she ended up in hospital 2 times with pneumonia. Both times had to spend 2 times in hospital. But she is a trooper. She keeps fighting every day. And the plus point of getting trach is she is finally on the growth chart.

She is gaining weight and height fine now. Another amazing thing happened is she has a little sister now. I will call her baby 'L' here. she is 1 year old. Anna is not that happy with her sister. When she was baby Anna used to like her a lot, since she can't hurt her or take her stuff. Now, baby L is all into Anna's stuff. She don't like we spending much time with Anna. She starts crying then :)

Another thing that is happening in the EB world is, everyone is now in a hope of finding a cure for EB. We are so hopeful now that a cure is very close. Dr.Tolar at University of Minnesota is very close to find a cure. He uses gene editing to correct the incorrect gene mutation which causes EB and puts those corrected cells back to the patient. He is waiting for FDA approval to start clinical trial on human. Also he needs lot of funding for that. There is very minimal government funding available for his research.

Several EB organizations are working very hard towards this research. There is an organization called EB Research Partnership(EBRP)(www.ebresearch.org) which is on a mission to raise 5M dollars this year for Dr.Tolar's research. This organization is founded by parents of EB kids. Several parents are doing stuff like this to raise EB awareness and funding for a cure. So we wanted to contribute towards it too. So I started a fundraiser on Anna's name on Crowdrise called 'Cure EB for Anna" https://www.crowdrise.com/annacureeb/. All the proceeds go to EBRP. Can you all please support us to raise money so that we can find a cure for EB for Anna and all other kids who suffers from this horrifying condition.

When Anna born there was very minimal research going on. But now things are looking very hopeful. I am so sure that within few years there will be a cure. Let us all work together for a cure!! also please keep praying for this to be true!!

Thank you
ss

Thankful Xmas !!!!

It is been a long time since I wrote a post. I have been too busy with work and life..it will be 12 by the time I get to sleep and then have to wake up several times to watch Anna. Anna has been doing so good last two months. She had only a very few wounds that didn't heal. We have been going out more lately. We got to go to church wearing nice dresses :-)we went Sea World. She got to feed ducks and dolphin there. She got to go in few rides also....She went Zoo and petting zoo.. She got to go shopping.. Went first time ever to shopping mall to buy her shoes and she got to try out her shoes.. She got some new friends.. She did coloring with them with crayons. She played ball with them. We went for xmas mass at church and caroling. She got to go to my work Xmas party for the first time. All my coworkers and friends got to meet her for the first time..., all the things every one takes for granted, I got to do with my baby during the last two months. I am so thankful to God I got to do all these small small things with my Anna.. She is so happy and wants to go out more often now. She don't have stranger anxiety as much as before now.. And we took the most difficult decision..we decided to do Tracheostomy on her. Her breathing has been labored so much lately. That is the biggest concern now. We want to save her life at any cost.. We love her more than anything in this world. I am still praying if there is any miracle to heal airway without that. We are taking her to Cincinnati Children's hospital for airway evaluation and surgery if needed. 24th is the appointment. Please pray for her for the safe surgery and recovery. And especially pray for her to be able to talk immediately after the surgery. If she can't talk, she is going to be very sad.. That is the biggest worry I have now. She is talking non stop now..I am praying so hard that she be able to talk soon after the surgery somehow. She is starting to get skin break down again. Hoping it will all heal again and all her pain will go away and she can enjoy life like a normal baby.. for her to be able to go to Zoo as much as she want..I now hope when we address her breathing issues her life will become little bit more easier.. I know there are so many complications with Trach. But hoping the benefits will outweigh it., Wish you all a Merry x'mas And A Happy New Year!!!!!

Why we are being tested again and again?

We got another test in our life this week. We were expecting a baby sister for Anna. Like us Anna
was very excited too. But this Monday we found out that baby passed away. :( I was 19 weeks pregnant. We don't know what happened. We did Amniocentesis test to verify baby have JEB or not. We were really worried if baby will have JEB. I could't imagine another baby suffering like Anna. And when the result came back, she didn't have the problem. All her chromosome tests also were good. We were so happy that we are going to get a healthy baby whom Anna can grow with and play with. Anna was even saving her stuffs for her baby sister. The next appt after the amino test was after 4 weeks with that doctor. When we go on Monday we didn't expect anything bad will happen. But when they started doing sonogram itself we found something is wrong with the baby. Normally she will be playing with her hands or legs or standing up. This time we couldn't see her moving at all. After a few mins they said baby has no heartbeat. We were devastated.  After 4 days of the amino procedure we had an appt with my obgyn and he checked her heartbeat and I could hear her kicking. Doctor was saying baby is very active. I don't know what happened after that. When they weigh her on the day of amino procedure she was 5 oz which is normal and when they weigh her this Tuesday, she was again 5 oz. that means after the procedure, she didn't grow at all. Is it the amino test that took my baby's life.. I still can't believe this happened. All my dreams are shattered. Can't I dream anything. Can't I dream like anything good is going happen. I thought this baby will wipe all our sorrows away. But who knows what is God's plan. But if he has to take away my baby, why he gave her, why he gave us hope and dreams.

When I came back from my appt on Monday, Anna asked for baby's photo. That was my greatest worry, what I will tell to my baby. I told her baby went to Jesus. She looked at me for few seconds and then asked again for photo. I told her again baby went to Jesus. Is it because she understand or what she changed subject. After some time when I picked her up, she looked at my tummy and told "mommy, baby is gone.". I told her don't worry, when Anna get bigger we will get another baby. And on Tuesday, while I was sitting there worried, she came near me and told, "mommy, when Anna get bigger another baby will come. ". After that she hasn't asked me abt baby. Thank God for making my 2 and half year old baby understand this. Otherwise every time she ask me about baby I would have cried.
Since I am almost 20 weeks, I had to go to an abortion specilist's clinic to take baby out. It was 2 day procedure. Today they did the d&e. They took my little girl out. I don't know how my baby looked like... They gave me complete anesthesia, so I didn't know anything. I asked them if I can at least get my baby's foot prints and hand prints. But they said it was hard since the baby was passed away almost 1 week ago... Oh Jesus I don't know what to think or do. How can this happen. I pray to God that no one else should go through what we are going through. I am not even able to just cry it out. Where I am going to keep down all my worries..when I will be able to get through this. For Anna's sake I can try to act like nothing happened. But can I forget this in my lifetime...I am trying to stay positive that God has some good intention.

Update, Alternative medicine, Alwin cream etc...

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.

Happy Bday my princess!!!

Today my precious girl turned two years old. We had a small party with a few close friends. Anna was so pretty in her beautiful pink dress her grand parents sent to her. Anna was so thrilled today. I will say this was the happiest day in her life. She was so happy to see the decorations, her gifts and seeing everyone. My brother was here with us also. I am posting one photo of her now. I will sure post more photos of her later this week....So busy lately, so hardly gets time to blog......

Hello!!

Anna is doing better now. She is talking a lot. Creating her own words. She is doing all the funny stuff to make us laugh. Her personality changed a lot after coming from the hospital. We are saying it is new Anna. Started to walk along the couch again. I am not going to work now, so Anna is so happy to have mommy always with her. So now I am running with her all day. We are having a great time together. While working it was very difficult to have a quality time with her.

Her Gtube feed is going good now. For a few weeks after coming from hospital, she was throwing up every morning. Later we found out that the pump was malfunctioning. It was feeding her in a faster rate than the rate we set. We got the pump replaced to a new brand, Kangaroo, which is a lot better than the first pump, Interalite infinity. Since we are running in a lower rate now, she is not getting enough calories. We need to slowly increase it. She still has occasional throwing up, I feel like, it is taking more time for her to digest. Children in her age can drink more than 4 ounces at a time, but she always was able to drink only two ounces at a time in 2 hour interval. We were thinking like it was because of her mouth hurts that she is drinking less. If her throwing up gets worse we need to look into this issue. She has reflux too, for which she is on Prevacid.

Then, most of you might have known that Tripp got his wings. He was very very sick for a long time now. Now he is free of pain. His mom, Courtney is a very nice lady, she is the first person I contacted after we got the diagnosis of Anna. She was very helpful to get started with Anna's care. I am praying for her to cope with this difficult times. Saying goodbye to our baby is very very hard and no mother should go through that pain. I can't think of a life without my Anna. Praying real hard to God to keep my baby healthy and safe!!

We are back home!!

After one month of stay at hospitals we are back at home. I am so thankful that I could bring my baby back home. Now each day with her is a blessing for me. I am so grateful to God for selecting me to be Anna's mom. She is such a precious baby. Seeing her smiling melts my heart. She is doing better now.

Now she has a gtube, so at least that way I can improve her nutrition. Now the concern is the airway. Before we knew that she has problem with her airway, but now we know that her airway is this critical. But we are just holding our faith on Jesus and believes she will be okey.  I don't want to put her through more pain by doing any treatment that does not promise a brightful and pain free life for my baby.We want her to be happy. If we feel like if there is any treatment that promises us that she will be okey, we will go for it.  She went through a lot for one month. Three central lines, two on each side of her neck, one on her diaper area. She lost lot of skin on one side of her neck and diaper area from the tapes they used to secure the central line in the first hospital, blood infection, blood transfusion, a gtube surgery, being intubated etc .... After all the things went through with her, she was not talking anything until two days back. She was not even showing any expression. Was startling in her sleep and was not able to sleep continuously also while she was in hospital.  By God's grace she is back to her norm, she started to talk and play now and sleep too. Before going to hospital she liked walking. (cruising along the couch). But now she can only stand for 1 min, aftermath of being in hospital bed for one month. Hope she will slowly pick it up.

I would like to note that she didn't get any skin damage or any harm from her hospital stay at Cincinatti. If you plan to do any surgery on a baby with EB, I would recommend taking them there. There is nothing you have to worry. Afterall seeing people who knows about EB is wonderful. The nurses in PICU there are just awesome.

This past one month is like a new life for us also. Was able to feel the love and support of many people. We got so many new friends who cares for us. And it was also a chance to spread awareness about EB. This Christmas is a special christmas for us. The best gift we could ever get, getting our baby back. To see her talking again, to see her smile again, to see her playing again. Thank you all for praying for her. This is the best gift ever.

You all have a Merry Christmas!!!!!!!