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!!!!!!!
Thursday, December 22, 2011
Friday, December 9, 2011
Thank you!!
Thank you all for your thoughts and prayers. Anna's extubation went fine. She is breathing on her own. She is safe for now. Don't know how her airway will be long term. Just praying for the healing of her airway. When they took the tube out she started crying, which is good sign that she is breathing okey. We were in another room praying for her. Doctor told me that I can hold her. Can you imagine how happy I was. It was like giving birth to her again and holding my baby for the first time. It was just miraculous. It was surprising for all of them and was so happy. Can you guess who was here to support us with Anna while the tube is taken. The EB nurse Geri Kelly. It was so nice having her here with us. Also the doctors and nurses here are so awesome. My father and uncle drove from Newyork and was with us at that time. My husbands' friend also came from Chicago.
Thanks again all of you for your prayers and the comments. I am sure that it is just the prayers that helped us to overcome this hurdle. Please keep praying for her quick recovery. Thanks!!
Thanks again all of you for your prayers and the comments. I am sure that it is just the prayers that helped us to overcome this hurdle. Please keep praying for her quick recovery. Thanks!!
Please pray for my baby.....
We brought Anna to Cincinatti to do the gtube surgery, here they have the expertise to do surgery on babies like her. She had her surgery on Wednesday. But they found a very narrow airway on her and put a breathing tube to save her. But now they are saying if they take the tube out she won't live. Even if she live , only for hours or days. Other option is putting a trach, but that is not a feasible solution for her with her disease. We have no other option other than taking the tube out and see what comes. Plan is to take it out today noon. Please pray for Anna. please pray for a miracle and her airway to heal. I need my baby back....
Friday, December 2, 2011
We are in the hospital
Anna got admitted to hospital last Tuesday. She got corneal abrasion again and this time it didn't heal after 5 days. Also she was in such a pain that she couldn't eat anything. She just wanted us to carry her. I called her pediatrician to check if there is any pain or sleep medicine that we can give her to ease pain and not rub on the eye more. Doctor asked us to come to her office and we had a lengthy and tearful conversation about what is happening with Anna and how to save her. She had contacted all her other doctors, dermatologist, pulminologist, pain management and they all came to a conclusion to admit Anna to a hospital where she will get special care for pain. Doctors were saying like the pain of corneal abrasion is more than the pain of childbirth or a broken bone. Just imagine that..
At hospital she soon started to get all the pain medications to make her sleep better. She hasn't been sleeping well for weeks. But being so sleepy from the medicines she hasn't been eating much. All of her doctors came in and start to talk about G-tube. And finally agreed to go for it. But she has been dehydrated and so tired by that time and was not in a stage to do G-tube surgery on her. And they moved her to PICU where they put a central line on her main vein near the diaper area. She got fluid for hydration, sedatives, pain medication and TPN for nutrition through that line.
After few days she got blood infection through that line and line also stopped working. She got the staff infection. Then they put the central line through her neck. The infection shook her entire body. Her blood count got reduced suddenly(anemia) and then her blood became thin means it won't clot fast. And affected all minerals in her body. The area where she got infection and that entire leg got swollen. She stopped urinating. Then they put foley line into her bladder. And then was not producing enough urin. Her potassium was very high. Which means it will affect her heart functioning. They gave medicine to produce urin and she started to pee a lot then and they took the potassium away from her TPN. The next day her potassium is
very low, so they gave supplement for that and some other minerals and changed TPN to have
potassium back. Also vitamin k to solve blood thinning. She also got a blood transfusion to
fix her low blood count.
Her breathing, blood pressure and heart rate everything was irregular because of the heavy
doses of pain medications she is in. Some days we were frightened to see how much she is struggling to take breath. And doctors were so afraid to do something on her. And doctors were suggesting to air lift her to Cincinatti EB center. But by God's grace she overcome all those hurdles. Then came the discussion of g-tube again. We were thinking something along the route of not intubating her for the surgery. If the breathing tube goes in and when they take it out, she may not be breathing because of her skin on her airway gets peeled off and it get closed. We were thinking about interventional radiology to do that with the assumption that it need just the sedation through medicine. But in this hospital they don't do that with an airway like hers. And also, since she has airway problems already, they will do the surgery only after putting the trach on her neck. Ya, g-tube comes as a combo for her. So we decided not to do g-tube here. Whatever happens we are not going to do the trach. If we do that it is a long term suffering for her. It was very hard to take a decision. She is way below the growth chart. And now we know the only thing that will extend her life time is getting a g-tube. If she is not taking enough by mouth then she is going to get malnourished and the rest u know. But going for a trach is not an option either. So it was like we are in between rock and a hard place, as her nurse said. We will look for places where they can do surgery without compromising her airway.
So many people are praying for her. Lots of friends came to hospital to give us support. I can
see a lot of improvement on her skin. God is doing a lot of healing on her. Thank God. And I
can't say how much thankful we are for your prayers. So many thanks for spreading the prayer request.
We are staying in the hospital as long as her central line stays in. So that she will get enough nutrients for wound healing and also for healing of her eyes and airway. Because we are not sure how much she will eat when we go home. Her corneal abrasion is not healed yet, both of her corneas are teared up almost completely. Yesterday doctor placed some contact bandage lenses on her eyes hoping that it will help to heal it fast. Hope it will stay there at least for a few days. Please keep Anna in your prayers. Also does any one know any babies with junctional EB with airway issues who got g-tube done without intubating them. If so can u plz email me your experiences or a contact number. I would really like to talk to someone about this. Thanks!
At hospital she soon started to get all the pain medications to make her sleep better. She hasn't been sleeping well for weeks. But being so sleepy from the medicines she hasn't been eating much. All of her doctors came in and start to talk about G-tube. And finally agreed to go for it. But she has been dehydrated and so tired by that time and was not in a stage to do G-tube surgery on her. And they moved her to PICU where they put a central line on her main vein near the diaper area. She got fluid for hydration, sedatives, pain medication and TPN for nutrition through that line.
After few days she got blood infection through that line and line also stopped working. She got the staff infection. Then they put the central line through her neck. The infection shook her entire body. Her blood count got reduced suddenly(anemia) and then her blood became thin means it won't clot fast. And affected all minerals in her body. The area where she got infection and that entire leg got swollen. She stopped urinating. Then they put foley line into her bladder. And then was not producing enough urin. Her potassium was very high. Which means it will affect her heart functioning. They gave medicine to produce urin and she started to pee a lot then and they took the potassium away from her TPN. The next day her potassium is
very low, so they gave supplement for that and some other minerals and changed TPN to have
potassium back. Also vitamin k to solve blood thinning. She also got a blood transfusion to
fix her low blood count.
Her breathing, blood pressure and heart rate everything was irregular because of the heavy
doses of pain medications she is in. Some days we were frightened to see how much she is struggling to take breath. And doctors were so afraid to do something on her. And doctors were suggesting to air lift her to Cincinatti EB center. But by God's grace she overcome all those hurdles. Then came the discussion of g-tube again. We were thinking something along the route of not intubating her for the surgery. If the breathing tube goes in and when they take it out, she may not be breathing because of her skin on her airway gets peeled off and it get closed. We were thinking about interventional radiology to do that with the assumption that it need just the sedation through medicine. But in this hospital they don't do that with an airway like hers. And also, since she has airway problems already, they will do the surgery only after putting the trach on her neck. Ya, g-tube comes as a combo for her. So we decided not to do g-tube here. Whatever happens we are not going to do the trach. If we do that it is a long term suffering for her. It was very hard to take a decision. She is way below the growth chart. And now we know the only thing that will extend her life time is getting a g-tube. If she is not taking enough by mouth then she is going to get malnourished and the rest u know. But going for a trach is not an option either. So it was like we are in between rock and a hard place, as her nurse said. We will look for places where they can do surgery without compromising her airway.
So many people are praying for her. Lots of friends came to hospital to give us support. I can
see a lot of improvement on her skin. God is doing a lot of healing on her. Thank God. And I
can't say how much thankful we are for your prayers. So many thanks for spreading the prayer request.
We are staying in the hospital as long as her central line stays in. So that she will get enough nutrients for wound healing and also for healing of her eyes and airway. Because we are not sure how much she will eat when we go home. Her corneal abrasion is not healed yet, both of her corneas are teared up almost completely. Yesterday doctor placed some contact bandage lenses on her eyes hoping that it will help to heal it fast. Hope it will stay there at least for a few days. Please keep Anna in your prayers. Also does any one know any babies with junctional EB with airway issues who got g-tube done without intubating them. If so can u plz email me your experiences or a contact number. I would really like to talk to someone about this. Thanks!
Saturday, November 12, 2011
Isn't she just precious?
I was looking through the albums and I found these cute photos of her when she was 14 months.. In the second photo she is answering do you love your grandmother(my mom)? haha it was very funny.. After a few days she forgot to show this....We should have video taped this.... :-)
Why she gets corneal abrasions for two months now?
Anna managed to open her eyes yesterday evening after holding it closed for three days. Her abrasion started on Monday morning. While she was playing, just closed her eyes and cried in pain. This happened for couple of times on that day. But she was doing fine. She must have rubbed her eyes again on Monday night, Tuesday morning was not able to open her eyes, but still managed to open occasionally. From Wednesday not opening at all. Thursday we took her to a new eye doctor who has experience with EB, hoping to get some advice on how to prevent corneal abrasions, even though that doc is out of network of our insurance. Her current doctor is fine in check up and giving medicines, but he won't even hear our questions or give any advice. He is always in hurry and he is not familiar with EB, so he might not know how we are suffering. This new doc gave the same medicines but one extra lubricant to put at bed time.
The reason he think is, in EB, eyes are just affected as the skin. After sleeping through night, if the eyes are dry, it can get stick to eye lid and just opening eyes in the morning can tear the cornea. It seems to be a valid reason, I have read about it for other EB patients. Afterall the protein, laminin332, the one she is lacking is the one that plays a vital role in eyes. She was having this severe constipation for two months now, that from an Ayurvedic medicine we tried to prevent Anemia. But that gave her blistering on her face as well. That also I believe because of skin getting dried up, despite the lubricants we apply several times a day. That may be the same reason her eyes got dried up. She is getting this corneal abrasion only for two months now. And then her usual rubbing might have caused the already teared area to tear some more. So I am thinking that it is not just her rubbing that caused it. Because she has been rubbing her eyes from birth. It used to give blisters to even her eye lid, but never inside her eyes.
I couldn't find the reason of her sudden blister outbreak on her face, her face otherwise was almost fine. I tried stopping oatmeal and wheat cereals, changed formula, but never doubted this medicine for anemia until recently. Usually not much after effects of using Ayurvedic medicine and she is taking other ayurvedic medicines for wound healing and breathing for more than one year without any issues. She got this problem, I guess because of her poor water intake. When we stopped the medicine last week, her constipation went away, facial blistering stopped and it is healing by God's grace. So hope that this change and putting the new lubricant on her eyes will prevent new abrasions.
Corneal abrasion is a worst thing to happen for Anna and to us also. I need to carry her rocking in sleeping position all day and (several times at night too). She won't lay down or allow me to sit either, I am totally exhausted after 5 days of carrying her, despite my MIL carrying her sometime for me to take a break. But after seeing her opened her eyes and do her usual plays just melt my heart. Mommy's sweet baby..
She is still watering from her eyes. Think it will take a couple more days to completely heal. Yesterday my husband and me were taking shifts at night to guard her from rubbing again. God, she is rubbing her eyes a lot. I hold her hands so many times.This is after giving Atarax at night for itching.
Praying to end this corneal abrasion episode. This is one of the worst thing to happen in EB.
Thanks everyone for praying for my baby!!..
The reason he think is, in EB, eyes are just affected as the skin. After sleeping through night, if the eyes are dry, it can get stick to eye lid and just opening eyes in the morning can tear the cornea. It seems to be a valid reason, I have read about it for other EB patients. Afterall the protein, laminin332, the one she is lacking is the one that plays a vital role in eyes. She was having this severe constipation for two months now, that from an Ayurvedic medicine we tried to prevent Anemia. But that gave her blistering on her face as well. That also I believe because of skin getting dried up, despite the lubricants we apply several times a day. That may be the same reason her eyes got dried up. She is getting this corneal abrasion only for two months now. And then her usual rubbing might have caused the already teared area to tear some more. So I am thinking that it is not just her rubbing that caused it. Because she has been rubbing her eyes from birth. It used to give blisters to even her eye lid, but never inside her eyes.
I couldn't find the reason of her sudden blister outbreak on her face, her face otherwise was almost fine. I tried stopping oatmeal and wheat cereals, changed formula, but never doubted this medicine for anemia until recently. Usually not much after effects of using Ayurvedic medicine and she is taking other ayurvedic medicines for wound healing and breathing for more than one year without any issues. She got this problem, I guess because of her poor water intake. When we stopped the medicine last week, her constipation went away, facial blistering stopped and it is healing by God's grace. So hope that this change and putting the new lubricant on her eyes will prevent new abrasions.
Corneal abrasion is a worst thing to happen for Anna and to us also. I need to carry her rocking in sleeping position all day and (several times at night too). She won't lay down or allow me to sit either, I am totally exhausted after 5 days of carrying her, despite my MIL carrying her sometime for me to take a break. But after seeing her opened her eyes and do her usual plays just melt my heart. Mommy's sweet baby..
She is still watering from her eyes. Think it will take a couple more days to completely heal. Yesterday my husband and me were taking shifts at night to guard her from rubbing again. God, she is rubbing her eyes a lot. I hold her hands so many times.This is after giving Atarax at night for itching.
Praying to end this corneal abrasion episode. This is one of the worst thing to happen in EB.
Thanks everyone for praying for my baby!!..
Wednesday, November 9, 2011
Why my baby has to suffer this much?
Anna is not feeling well for two months now. Issues after issues.. she was doing fine and our life was "normal" despite her condition. Just that we had to treat her skin and wounds. She got more break down on her face and bottom also. Now it is more than skin, she is getting recurrent corneal abrasions. I am afraid how it is going to affect her. If one week she is fine, the next week she will get it again. And we guess it is because she rubs her eyes at night. If she get one, she won't open her eyes for three to four days. And more painful thing is she won't eat anything. Her weight gain is already very poor.
All her doctors are pushing for g-tube. We are refusing it just because we don't want to put her through surgery and then knowingly another sore on her body. And I am sure that she will pull on that tube and cause more problems. Can u imagine she is 19 months and just weigh 18.5 lbs. She is out of her growth chart. and another fact is from last December she weighed only 2 pounds.. yaa.. that is true.. just two pounds. This last week she hit to 19 lbs and now dropped to 18.5 pounds.
She got corneal abrasion on Monday. And not eating much from that day. So sure that her weight must be dropped below 18. Now again doctors are going to talk about g-tube..She hasn't opened her eyes today morning.
What a horrible disease is this.. Not a single peaseful day for two months now. Daily some new problems. My poor baby is going through tremendous pain. Can I blame her for being angry or cry to take her up to rock her several times during night.. Now every day is a struggle. Don't know what will happen tomorrow. Life is now unpredictable. Life is becoming more and more difficult. If it is just skin that this disease is affecting, I would be happier. Now it is every where, her breathing, her eyes, her growth..... This is doing more damage to her body daily. Just imagin pain from her finger tips to her eyes to her throat to her entire body. how can this be? Why my baby has to suffer like this?
When will be an end for her suffering? I still have a little hope left for my baby to have a normal life. I am afraid to think about future. I am only thinking about a brightful future. One day my baby can wear beautiful dresses like other kids without worrying about seams or buttons or elastic, one day she will get many friends and play with them without worrying about hurting, one day I can talk to others about her without holding a tear that starts to roll from my eyes or hiding the pain I feel in my heart..one day I can take her to everywhere I go, one day I can pick her up how others pick up their kids...When will this be.................
If some one reads this please say a prayer for my baby...thanks
All her doctors are pushing for g-tube. We are refusing it just because we don't want to put her through surgery and then knowingly another sore on her body. And I am sure that she will pull on that tube and cause more problems. Can u imagine she is 19 months and just weigh 18.5 lbs. She is out of her growth chart. and another fact is from last December she weighed only 2 pounds.. yaa.. that is true.. just two pounds. This last week she hit to 19 lbs and now dropped to 18.5 pounds.
She got corneal abrasion on Monday. And not eating much from that day. So sure that her weight must be dropped below 18. Now again doctors are going to talk about g-tube..She hasn't opened her eyes today morning.
What a horrible disease is this.. Not a single peaseful day for two months now. Daily some new problems. My poor baby is going through tremendous pain. Can I blame her for being angry or cry to take her up to rock her several times during night.. Now every day is a struggle. Don't know what will happen tomorrow. Life is now unpredictable. Life is becoming more and more difficult. If it is just skin that this disease is affecting, I would be happier. Now it is every where, her breathing, her eyes, her growth..... This is doing more damage to her body daily. Just imagin pain from her finger tips to her eyes to her throat to her entire body. how can this be? Why my baby has to suffer like this?
When will be an end for her suffering? I still have a little hope left for my baby to have a normal life. I am afraid to think about future. I am only thinking about a brightful future. One day my baby can wear beautiful dresses like other kids without worrying about seams or buttons or elastic, one day she will get many friends and play with them without worrying about hurting, one day I can talk to others about her without holding a tear that starts to roll from my eyes or hiding the pain I feel in my heart..one day I can take her to everywhere I go, one day I can pick her up how others pick up their kids...When will this be.................
If some one reads this please say a prayer for my baby...thanks
Sunday, November 6, 2011
Therapy to 'switch off' defective genes which causes skin blistering!!
Here is a news about a new research that is going on in UK to cure EB.
Therapy to switch off defective gene which causes EB
This looks less riskier than BMT given that it is the patient's own corrected cells are being transplanted back to the body. They are yet to find a way to transplant it back.
I am thankful that at least I can see some hopeful news once in a while.
But I always wonder that why can't someone find a way to give the protein that is missing in these patients as a medicine or a medicine that helps to generate this protein. In Anna's case she had lack of protein called Laminin 332. For other gene related problems there are alternative ways to solve that. For example, Thrombosis, it is because of gene defect, protein-s deficiency. Because of this protein defect, one's blood will clot too fast. The solution for that problem is use a blood thinner like Heparin injections or take aspirin tablets by mouth. Why can't someone find something like this for EB.
I also read somewhere that for EB simplex, the missing protein, Keratin, can be increased by using a substance in Brocolli. Why can't people do research on these. Is there any food that
gives Laminin 332. Even for Collagen, another missing protein in other forms of EB also is
well known, which is used for anti aging formulas. But I can't find any information about
Laminin. By can't people do some research on these things to save life of these babies??
Therapy to switch off defective gene which causes EB
This looks less riskier than BMT given that it is the patient's own corrected cells are being transplanted back to the body. They are yet to find a way to transplant it back.
I am thankful that at least I can see some hopeful news once in a while.
But I always wonder that why can't someone find a way to give the protein that is missing in these patients as a medicine or a medicine that helps to generate this protein. In Anna's case she had lack of protein called Laminin 332. For other gene related problems there are alternative ways to solve that. For example, Thrombosis, it is because of gene defect, protein-s deficiency. Because of this protein defect, one's blood will clot too fast. The solution for that problem is use a blood thinner like Heparin injections or take aspirin tablets by mouth. Why can't someone find something like this for EB.
I also read somewhere that for EB simplex, the missing protein, Keratin, can be increased by using a substance in Brocolli. Why can't people do research on these. Is there any food that
gives Laminin 332. Even for Collagen, another missing protein in other forms of EB also is
well known, which is used for anti aging formulas. But I can't find any information about
Laminin. By can't people do some research on these things to save life of these babies??
Sunday, October 30, 2011
BMT to cure EB in Vietnam !!!!
This is exciting to know that researchs are going on around the world to find a cure for EB.
I just found a news that Vietnam done it's first bone marrow transplant to cure an EB baby. The results looks promising. Please see below.
http://www.thanhniennews.com/2010/Pages/20111028-Vietnam-cures-first-blister-patient-with-marrow-transplant.aspx
There are several bone marrow transplant done in the US to cure EB. But the procedure for that is very risky and doctors are trying very hard to make it in less risky way. Now that this is been done on other countries as well, I am sure that there will be some hope soon.
If BMTs are becoming less risky, then it can be considered as a treatment option. Hope we will get some treatment within 5 to 6 years. The soon we can provide a treatment for Anna the better. Because the damages that EB causes to her body will be minimal. I thought to update the news right away, because This news gives me some hope to get a cure for Anna in the near future!!! Back to sleep!!! Then goodnight!!!!
I just found a news that Vietnam done it's first bone marrow transplant to cure an EB baby. The results looks promising. Please see below.
http://www.thanhniennews.com/2010/Pages/20111028-Vietnam-cures-first-blister-patient-with-marrow-transplant.aspx
There are several bone marrow transplant done in the US to cure EB. But the procedure for that is very risky and doctors are trying very hard to make it in less risky way. Now that this is been done on other countries as well, I am sure that there will be some hope soon.
If BMTs are becoming less risky, then it can be considered as a treatment option. Hope we will get some treatment within 5 to 6 years. The soon we can provide a treatment for Anna the better. Because the damages that EB causes to her body will be minimal. I thought to update the news right away, because This news gives me some hope to get a cure for Anna in the near future!!! Back to sleep!!! Then goodnight!!!!
Saturday, September 17, 2011
Corneal abrasion
Last week was horrible. Anna got corneal abrasion on her right eye for the first time. My poor baby was in severe pain. Wednesday morning she was not opening her eyes even after we woke up. She didn't even open it to wave TATA to us. Just said bye bye. We thought she may be tired and want to sleep more, but I had this strong doubt that she got some problem with her eyes. This is a thing that I was always afraid of. Friday we took her to pediatrician and then to eye doctor. Eye doctor was not experienced with EB but he was very gentle with Anna. When he tried to open her eyes to examine it, I was begging him to be very gentle with her. But he was very calm and did a good job. He put dye on her eyes to examine it and said that there is a scratch on her cornea, but it was already started to heal. He gave some medicine to put on her eye and asked to come back on Monday. He said by that time she will be fine. Last Saturday and Sunday was the worst days ever. She was not opening her eyes at all, whenever she open, tears will start to flow. And was very sensitive to light. We switched off all light, put curtain on all windows. The worst part is she was not eating or drinking anything. She won't sit down or lay down. I was carrying her all day long by rocking her. Monday also she was not opening eyes well. Doc asked to continue medicine until Wednesday and we need to go back on check up. By God's grace she is doing okey now. Wish, I could sit near her all night to prevent her from rubbing her eyes again. I can't imagine how much pain my baby is going through.
Whenever it hurts somewhere or itches, she will ask us to apply Aquaphore. Poor baby, she is thinking like all her pain and boo boos will go away with Aquaphore. If we say that we have some pain or some one coughs she will offer Aquaphore. She is a such a caring and loving baby. Wish she don't have to face such horrible and painful things any more. God please keep her safe this night and every night to come. I am so thankful for my baby. She is truly a blessing. I love you my Annu.
Whenever it hurts somewhere or itches, she will ask us to apply Aquaphore. Poor baby, she is thinking like all her pain and boo boos will go away with Aquaphore. If we say that we have some pain or some one coughs she will offer Aquaphore. She is a such a caring and loving baby. Wish she don't have to face such horrible and painful things any more. God please keep her safe this night and every night to come. I am so thankful for my baby. She is truly a blessing. I love you my Annu.
Friday, September 9, 2011
Telling others about EB!!
This is always a difficult job to explain some one about what Anna has. When I say that she has skin disease the first response comes is, oh it is just skin, it will go away. Okey. I don't bother to explain it too. I don't want anyone to know that my baby has this devastating disease. I don't want anyone know that we are struggling with this disease. I dreamed about having a health baby, showing my baby to everyone, taking her to parties, going trips, going to church together etc etc. Lot of dreams. But this disease shattered all my dreams. I can't even share a good photo of my baby with any one. Yes I have a baby with disease I should accept it. But I can't, I am living in a hope that soon she will get cured, her disease will go away. May be by miracle or a cure, then I can show her to the world. How soon it will be I don't know, how long I can keep it from others I don't know. I still can't agree that she has some disease that is not curable. I belive truly that there will be a cure soon..
Only very few best friends and our closest family know that she has this disease, others know that she has a skin disease. But they think like it is a temporary thing and will go away. I don't have the courage to tell anyone about this. The most frightening thing is the images they get when they search in Internet. At my work, none of the poeple no that she has EB. Well, no one asks me about the disease's name. No one wants to know more about it, then why I should bother about explaining what she has. Even if I explain there is no use. No one understand anything about how we are struggling daily, mentally and physically. When everyone ask how is Anna, I will say ' she is okey' I will never say 'she is good'. Because she is not good. She is always in pain. She always gets one problem after another. If she is happy one day, the next day she will get some problem.
Another reason I don't volunteer to tell is that I don't think I can work comfortably with them after that. Now that no one know about this, I can forget about EB and work peacefully at work and come back home and worry. Well, not peacefully, at work also, if I am not busy will be always thinking like, does Anna eat anything, is she breathing well, when is her next dr appts, what phone calls need to make for her insurance, supplies etc,
I know one day I need to tell this to everyone, one day everyone will know that she has EB. But could I be able to tell that Anna had EB and she is cured and is doing fine now??? let time tell.
But nowadays I have this strong feeling that I should do something to let everyone know that there is a disease like this. There are babies born in pain and is living in pain. I think I am slowly getting strength to tell world that Anna is battling with EB. At least this blog is a starting point.
Only very few best friends and our closest family know that she has this disease, others know that she has a skin disease. But they think like it is a temporary thing and will go away. I don't have the courage to tell anyone about this. The most frightening thing is the images they get when they search in Internet. At my work, none of the poeple no that she has EB. Well, no one asks me about the disease's name. No one wants to know more about it, then why I should bother about explaining what she has. Even if I explain there is no use. No one understand anything about how we are struggling daily, mentally and physically. When everyone ask how is Anna, I will say ' she is okey' I will never say 'she is good'. Because she is not good. She is always in pain. She always gets one problem after another. If she is happy one day, the next day she will get some problem.
Another reason I don't volunteer to tell is that I don't think I can work comfortably with them after that. Now that no one know about this, I can forget about EB and work peacefully at work and come back home and worry. Well, not peacefully, at work also, if I am not busy will be always thinking like, does Anna eat anything, is she breathing well, when is her next dr appts, what phone calls need to make for her insurance, supplies etc,
I know one day I need to tell this to everyone, one day everyone will know that she has EB. But could I be able to tell that Anna had EB and she is cured and is doing fine now??? let time tell.
But nowadays I have this strong feeling that I should do something to let everyone know that there is a disease like this. There are babies born in pain and is living in pain. I think I am slowly getting strength to tell world that Anna is battling with EB. At least this blog is a starting point.
Thursday, August 18, 2011
Thank you mom!
Today I would like to thank my mom for what she has done for us and for Anna.
My mom was at our side since Anna's birth. She has seen Anna's ups and downs. She has been staying with us for six and half months now to help us with Anna. Mom is going back on next Saturday to her home at NY. My words are not enough to say thank you to both of our families to helping us with this difficult situation.
My mom first came to help me with Anna's birth thinking that I will have a healthy baby. I wanted her to be by my side because I was so afraid of delivery and handling a new born. So my mom came over before two weeks of my due date, in March second week. I had a c-section, so mom was taking care of Anna day and night and me. I had to go back to work after 8 weeks. And my husband was a full time student and was working part time at school. Mom stayed with us till August end. Anna had a severe break down during 3rd and 4th months. My mom is the only reason Anna is alive today and as good as she is now. During third month she started to blister severely in her two arms and legs and on her bottom. We were not even able to take her and Anna didn't want us to take her either because of the tremendous pain she is in. I knew very little how much difficult it was taking care of her. Even the diaper changing was very hard on her and the daily dressing change. Thank God for sending my mom for our help. I don't know what I might have done with out mom's help.
By the time my mom went back Anna was completely healed and was stable. My mom always used to say that she want to leave after Anna completely healed so that I will be able to take care of her. I don't know how much I could thank you mom. After my mom left my husband's parents came and helped us taking care of her for 5 months. They left in January and my mom again had to come over. There was no other way I can go to work and take care of Anna. You may think that why couldn't I leave work. One of the reason was my husband was a student and my insurance was paying for Anna's medications And dressing and we had other problems as well.
Both times my mom came resigning her job to help me. I know everyone will think like that is the stupid thing to do to leave the job, but we really needed her help because of many reasons. I am so so thankful for my mom for her sacrifices and also to you pappa for letting my mom come and stay with us. My pappa was juggling with work and home alone. This time mom has been staying us for 6 and half months now.. Thank you so much mommy for your help. You are truly amazing and I mentioned you before you are an angel who God send to help Anna. Of course, both of our family are supporting and helping us. But I need to give her so much more credits, for her sacrifices, being day and night by our side helping with Anna from her birth, taking care of me after delivery and so much and so much. Mommy I love you I love you so much. You are the reason how I am capable of taking care of Anna now, you are the reason Anna is alive and good today, you are the reason Anna started walking.
Thank you mom for being my side. Thank you God for my mom. Thank you God for both of our family!! Anna you are blessed to have loving grand parents.
Anna I promise I will be by your side day and night like how my mom helped me....
My mom was at our side since Anna's birth. She has seen Anna's ups and downs. She has been staying with us for six and half months now to help us with Anna. Mom is going back on next Saturday to her home at NY. My words are not enough to say thank you to both of our families to helping us with this difficult situation.
My mom first came to help me with Anna's birth thinking that I will have a healthy baby. I wanted her to be by my side because I was so afraid of delivery and handling a new born. So my mom came over before two weeks of my due date, in March second week. I had a c-section, so mom was taking care of Anna day and night and me. I had to go back to work after 8 weeks. And my husband was a full time student and was working part time at school. Mom stayed with us till August end. Anna had a severe break down during 3rd and 4th months. My mom is the only reason Anna is alive today and as good as she is now. During third month she started to blister severely in her two arms and legs and on her bottom. We were not even able to take her and Anna didn't want us to take her either because of the tremendous pain she is in. I knew very little how much difficult it was taking care of her. Even the diaper changing was very hard on her and the daily dressing change. Thank God for sending my mom for our help. I don't know what I might have done with out mom's help.
By the time my mom went back Anna was completely healed and was stable. My mom always used to say that she want to leave after Anna completely healed so that I will be able to take care of her. I don't know how much I could thank you mom. After my mom left my husband's parents came and helped us taking care of her for 5 months. They left in January and my mom again had to come over. There was no other way I can go to work and take care of Anna. You may think that why couldn't I leave work. One of the reason was my husband was a student and my insurance was paying for Anna's medications And dressing and we had other problems as well.
Both times my mom came resigning her job to help me. I know everyone will think like that is the stupid thing to do to leave the job, but we really needed her help because of many reasons. I am so so thankful for my mom for her sacrifices and also to you pappa for letting my mom come and stay with us. My pappa was juggling with work and home alone. This time mom has been staying us for 6 and half months now.. Thank you so much mommy for your help. You are truly amazing and I mentioned you before you are an angel who God send to help Anna. Of course, both of our family are supporting and helping us. But I need to give her so much more credits, for her sacrifices, being day and night by our side helping with Anna from her birth, taking care of me after delivery and so much and so much. Mommy I love you I love you so much. You are the reason how I am capable of taking care of Anna now, you are the reason Anna is alive and good today, you are the reason Anna started walking.
Thank you mom for being my side. Thank you God for my mom. Thank you God for both of our family!! Anna you are blessed to have loving grand parents.
Anna I promise I will be by your side day and night like how my mom helped me....
Saturday, July 30, 2011
How we found out Anna has EB....
After birth, Anna was in NICU for four days for her breathing trouble. When we took her home she had a small portion of skin missing from her chest where the heart monitor was stick. Even though we noticed that, we didn't care much about it as we were much happier that we could go home with Anna. So we didn't even care to note that to the nurse.
My mom was with us to help us with Anna. I didn't even know how to take a baby so it was great help having my mom here. Anna was doing almost fine. But she used to cry a lot during night. Sometimes breast feeding will calm her. Sometimes nothing seem to calm her. After a few days she got a blister on her right elbow. It was a like blister that we get when we get burnt. So we came into a conclusion that it is becauseof heat and it is the summer heat in Texas and her skin might be very sensitive to heat. So we start to put ac on.
She used to rub her elbows a lot when she cries that made the blister broke and caused an wound in her elbow. The next day she got one blister on her right ear, that also look similar to one on the elbow. We started to get concerned, but still thought of it being a heat blister. And soon we started to saw some tiny blisters on her calves. She used to kick her legs together a lot. We started to search all over Internet for a cause for this. What we found from Internet was it can be some kind of bacterial or viral infection which she might have got from her hospital stay. We got alarmed and finally took her to her pediatrician Dr.S.
Dr.S send us to a dermatologist and he said that it can be some knd of staff infection or it can be Epidermolisis Bullosa. We didn't hear this name clearely then and we didn't give any search for this too. Anyway to diagonize that he need to do a skin biopsy. We said we will check for the staff infection, if it turns negative we will opt of skin biopsy. Because I didn't want to hurt my baby unnecessarily. He took some cultures from her wounds and send us back home. But when we reached home we noted even more tiny blisters on her legs, it was like multiplying. We called Dr.S and she admitted Anna in NICU in the same hospital she was before.
They put Anna is a seaparate room to avoid spreading the disease to others. The doctors and nurses wear yellow plastic over coats and stuff and soon they put her in IV antibiotics. Since they were not sure about what infection she has they were giving all anti bacterial and anti viral medicines. And they took blood from her for testing. My poor baby she was crying and crying. We were all so worried and was not sure what is going on with her. I was crying all the time. They put her there and send us home. It was so hard on us coming home without baby.
The next day they talked us into doing another test on her, that is taking fluid from her spinal cord to test some infection. My poor baby went through a lot of pain. Most of the results of her tests started to come back negative. The doctors took pictures of her blisters and wounds and then send to a dermatologist. The dermatologist came on the next day and he was like most sure about what she has. He asked whether we have any history of blistering in any one of our family. We said no. Then he said it looks like it is Epidermolisis Bullosa. To diagonize that he has to do a skin biopsy. Okey. They got us into agreeing that. We went outside as we didn't have the courage of seeing our baby go through this horrible thing. It is like cutting a portion of skin out of her body, like the size of a penny. I could hear my baby screaming of pain. They said it will take about two weeks for the results to come back. Dr said most likely she has EB simplex, which is the least severe form. And he handed us over some print outs about this disease which had some horrible images. Even then I couldn't realize that this disease will be something this much horrible. Actually I was in the relief that she didn't have any infections.
My husband did some research on the Internet and he understood that this is something serious. He look so worried and when asked he told me what he found out. And even then I was comforting him saying that she won't be having any thing like that. I don't know I couldn't realize it then. When all the test results came back negative Anna was released from NICU with the possible diagnosis of EB.
After two weeks we had an appointment with the dermatologist and her biopsy result came back as Junctional EB.
Junctional EB is recessive which means both parents are carriors of a defective gene. And she got that defective gene from both of us. We are carriors and will know that we are carriors only when there is an offspring from us with this disease. There is 25% chance that baby will get this. My poor Annu got that bad luck. It is one of the severe type and has two types within it. Herlitz and non herlitz. To know which one she has we had to do a genetic test. Junctional EB is so rare that one in a million people gets that. She has a deficiency of Laminin 332. We did the genetic test on her and her mutation is never reported before. So they are not sure about whether she has severe type or not. But by looking at the mutation and protein they doubt it could be a severe type. Eventhough Anna had to pass through some difficult times she is mostly doing okey as of now.
My mom was with us to help us with Anna. I didn't even know how to take a baby so it was great help having my mom here. Anna was doing almost fine. But she used to cry a lot during night. Sometimes breast feeding will calm her. Sometimes nothing seem to calm her. After a few days she got a blister on her right elbow. It was a like blister that we get when we get burnt. So we came into a conclusion that it is becauseof heat and it is the summer heat in Texas and her skin might be very sensitive to heat. So we start to put ac on.
She used to rub her elbows a lot when she cries that made the blister broke and caused an wound in her elbow. The next day she got one blister on her right ear, that also look similar to one on the elbow. We started to get concerned, but still thought of it being a heat blister. And soon we started to saw some tiny blisters on her calves. She used to kick her legs together a lot. We started to search all over Internet for a cause for this. What we found from Internet was it can be some kind of bacterial or viral infection which she might have got from her hospital stay. We got alarmed and finally took her to her pediatrician Dr.S.
Dr.S send us to a dermatologist and he said that it can be some knd of staff infection or it can be Epidermolisis Bullosa. We didn't hear this name clearely then and we didn't give any search for this too. Anyway to diagonize that he need to do a skin biopsy. We said we will check for the staff infection, if it turns negative we will opt of skin biopsy. Because I didn't want to hurt my baby unnecessarily. He took some cultures from her wounds and send us back home. But when we reached home we noted even more tiny blisters on her legs, it was like multiplying. We called Dr.S and she admitted Anna in NICU in the same hospital she was before.
They put Anna is a seaparate room to avoid spreading the disease to others. The doctors and nurses wear yellow plastic over coats and stuff and soon they put her in IV antibiotics. Since they were not sure about what infection she has they were giving all anti bacterial and anti viral medicines. And they took blood from her for testing. My poor baby she was crying and crying. We were all so worried and was not sure what is going on with her. I was crying all the time. They put her there and send us home. It was so hard on us coming home without baby.
The next day they talked us into doing another test on her, that is taking fluid from her spinal cord to test some infection. My poor baby went through a lot of pain. Most of the results of her tests started to come back negative. The doctors took pictures of her blisters and wounds and then send to a dermatologist. The dermatologist came on the next day and he was like most sure about what she has. He asked whether we have any history of blistering in any one of our family. We said no. Then he said it looks like it is Epidermolisis Bullosa. To diagonize that he has to do a skin biopsy. Okey. They got us into agreeing that. We went outside as we didn't have the courage of seeing our baby go through this horrible thing. It is like cutting a portion of skin out of her body, like the size of a penny. I could hear my baby screaming of pain. They said it will take about two weeks for the results to come back. Dr said most likely she has EB simplex, which is the least severe form. And he handed us over some print outs about this disease which had some horrible images. Even then I couldn't realize that this disease will be something this much horrible. Actually I was in the relief that she didn't have any infections.
My husband did some research on the Internet and he understood that this is something serious. He look so worried and when asked he told me what he found out. And even then I was comforting him saying that she won't be having any thing like that. I don't know I couldn't realize it then. When all the test results came back negative Anna was released from NICU with the possible diagnosis of EB.
After two weeks we had an appointment with the dermatologist and her biopsy result came back as Junctional EB.
Junctional EB is recessive which means both parents are carriors of a defective gene. And she got that defective gene from both of us. We are carriors and will know that we are carriors only when there is an offspring from us with this disease. There is 25% chance that baby will get this. My poor Annu got that bad luck. It is one of the severe type and has two types within it. Herlitz and non herlitz. To know which one she has we had to do a genetic test. Junctional EB is so rare that one in a million people gets that. She has a deficiency of Laminin 332. We did the genetic test on her and her mutation is never reported before. So they are not sure about whether she has severe type or not. But by looking at the mutation and protein they doubt it could be a severe type. Eventhough Anna had to pass through some difficult times she is mostly doing okey as of now.
Saturday, June 25, 2011
When Anna was born........
We got our baby after a long wait and prayers. We longed for normal family like every one else. You know, a small loving family with two or three kids. But God had something else in store for us.
I had an almost perfectly healthy pregnancy. Anna didn't even cause me pregnancy problems such as morning sickness etc. She came four days late of the expected due date. My pain started on March 24th night, but was only a little bit dilated when reached hospital at about 5 am in the morning of 25th.
They gave me epidural and induced me. I tried for 6 hours. But the heart rate of baby was not satisfying. Doctor said baby is in some distress, but he was not sure about the reason. They gave me oxygen, but still baby's heart rate was not looking good. So finally we gave up and asked for a C-section. Thus my precious baby Anna, was born on March 25th at 2:43 pm. When they took her out, her breathing was not good. Doctor was saying that we made a good decision to opt for a C-Section.
Before they rush her to NICU, nurse showed her to me. First look at my cute baby! I was crying with joy of having my baby. My baby gave me a look while crying with her big black eyes. I can never forget that look she gave me. I felt like she is asking, 'oh mommy why did u wait this long to take me out'. But now I feel like, she should meant like, 'oh mommy, you don't know what I am going to suffer. You don't know how difficult my life will be'. Oh my baby, I was thinkng that once your breathing is under control we will get you back as normal without any problems.
But I am so thankful for God for giving you. I am so thankful for God for making us take a decision to not wait any more and take you out soon. You are an amazing little girl. I love you Annu..I love you more than anything in this world..
I had an almost perfectly healthy pregnancy. Anna didn't even cause me pregnancy problems such as morning sickness etc. She came four days late of the expected due date. My pain started on March 24th night, but was only a little bit dilated when reached hospital at about 5 am in the morning of 25th.
They gave me epidural and induced me. I tried for 6 hours. But the heart rate of baby was not satisfying. Doctor said baby is in some distress, but he was not sure about the reason. They gave me oxygen, but still baby's heart rate was not looking good. So finally we gave up and asked for a C-section. Thus my precious baby Anna, was born on March 25th at 2:43 pm. When they took her out, her breathing was not good. Doctor was saying that we made a good decision to opt for a C-Section.
Before they rush her to NICU, nurse showed her to me. First look at my cute baby! I was crying with joy of having my baby. My baby gave me a look while crying with her big black eyes. I can never forget that look she gave me. I felt like she is asking, 'oh mommy why did u wait this long to take me out'. But now I feel like, she should meant like, 'oh mommy, you don't know what I am going to suffer. You don't know how difficult my life will be'. Oh my baby, I was thinkng that once your breathing is under control we will get you back as normal without any problems.
But I am so thankful for God for giving you. I am so thankful for God for making us take a decision to not wait any more and take you out soon. You are an amazing little girl. I love you Annu..I love you more than anything in this world..
Saturday, June 18, 2011
Hello World!!
Trying out my first blog post.
Weekends are off for me from work. So looking forward to have some quality time with Annu.
Later
ss..
Weekends are off for me from work. So looking forward to have some quality time with Annu.
Later
ss..
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