Emma as Piglet
November 23, 2009
November 23, 2009
While seeing the geneticist last Thursday, November 19, she had several other doctors come in to confirm what she suspected. She told us that Emma has the Cornelia de Lange Syndrome. Having a diagnosis isn’t going to change much of anything for us, except that it will be easier to fill out all the medical paperwork for Emma. Some of the characteristics are low birth weight, delayed growth, developmental delays, limb differences, small head size, long eyelashes, thick eyebrows, hearing impairments, vision abnormalities, gastroesophageal reflux, heart defects, feeding problems, neurological problems, late teeth and autistic traits. According to information I have found it affects 1 in 10,000 newborns and can range from mild to severe. Emma is not on the severe end as she does not have any deformed limbs. Progress will be at her own rate. So, we will continue to get all the extra therapies, etc. available for Emma. And again, all we can do is treat whatever symptoms come our way.
Thanks for your continued prayers.
Love to all, Grandma Carol
November 2, 2009
Emma’s home and has all her teeth!
Posted by emmakissock under Emma, Grandma Carol, John, Michelle, RobinLeave a Comment
On Thursday (Oct. 29th) Emma’s last top tooth came in. On Friday, Oct. 30th, her last bottom tooth came in. So she has all her teeth. Of course, what was supposed to be the first teeth, were actually the last teeth to come in. Again, Emma did it her own way! On Friday, Robin said that Emma may be able to go home before Sunday. It didn’t happen on Friday, but was told that Emma could go home on Saturday. Robin had signed paperwork so that I could take her home. Well, when I got to the hospital, Emma was fussing and felt warm. So I had the nurse take her temperature – which was 101. So that gave us the impression that she wouldn’t be going home on Saturday. Well, they did blood tests, urine tests and chest x-rays to see what they could find. Nothing showed up, so when the doctor came in around 11:00 and her temp was back down, he said she could still go home. So that started the paperwork process. We had some issues getting the correct medication to go home, but that was finally resolved. Then it was time to disconnect the IV from her port. The nurse asked if Mom or Dad were available to come and take a look at it. Robin had just gotten off work, so she went and picked up Michelle and John and they all came to the hospital. Emma was all smiles and cuddled with everyone. They all got to see what Emma’s port looked like. Of course, you can’t see anything except the bump on her chest where it is. It is one that doesn’t take a lot of work to maintain. So that is good. The main thing is not to get hit where the port is. So by 4:30 we all left the hospital and took Emma home. She was just happy to be laid on the floor and able to move where she wanted to. Sunday Emma slept most of the day and had a few issues with feeding, but they all have passed. Emma had an appointment with the pediatrician this morning and everything is fine. Emma weighs 22 lbs. 8 oz. So she is gaining back what she had lost in the hospital. So hopefully we are on the right track again. Thanks for all the words of encouragement and your prayers.
Love to all, Grandma Carol
October 29, 2009
The doctors have said that Emma can go home on Sunday (barring any set backs). She is tolerating some of her feeds and they are gradually increasing them. She may have to go home on the IV nutrition, but the doctor said that it probably wouldn’t be long that she would be on them. They need to get her back on the formula so that she gets her calories and gains the weight back. Thanks for all the prayers.
Love, Grandma Carol
October 27, 2009
Emma has started to tolerate her feeding (at times). If her stomach is distended, then they hold the feeding and wait 3 hours to see where her stomach is at then. She is at 85 ml. Her normal is 170 ml. So we are about half way there. Some of the test results are back. Emma’s test for H1N1 is positive. But most of the flu symptoms are gone now. Just trying to get the feeding back up to where it should be. They are going to shoot for a Friday hospital release date. So time will tell. Emma has not wanted to take naps in the afternoon. But, when she doesn’t have a nap, she will fall asleep by 9 p.m. and usually will sleep the night with only an occasional cry for her pacifier. So, that is the latest. Thanks for all the prayers. I know they are helping. Love to all, Grandma Carol
October 23, 2009
Emma is still not tolerating her feeds. Yesterday they put in a permanent type of IV line. She made it through the surgery ok, but was fussy all night long. They tried to feed her, but her stomach became distended again, so feeds were stopped. I haven’t heard from Robin in awhile, but she said that she was going to try to get a nap in, so hopefully that is happening. They are hoping to get Emma back on her feeds and possibly home early next week, but I’m not going to hold my breath. They are testing Emma for the different viruses and flu. So, they are being very strict on who can come in to see Emma. If you have a cold or flu, you are not allowed in the hospital. The hospital is screening all visitors and limiting the number of visitor each patient has. They even are counting Mom and Dad as visitors, so most of Robin’s contact with others is via her cell phone. I will be trading places with Robin for the weekend. That way she can work and spend time with John and Michelle. I’ll let you know when I hear more.
Love to all, Grandma Carol
October 21, 2009
Last night they admitted Emma again for feeding intolerance. They are going to put in a central line tomorrow. They are trying to give Emma pedialyte every hour, but she just continues to cry after they give it to her. So we don’t have any solution in sight at the moment. Just frustrated. I’ll let you know more when I hear it.
Grandma Carol
October 16, 2009
Beginning today Emma will have a nurse at the house every day for about 8 hours. They have authorized this to try to keep Emma out of the hospital and to try to catch things early and take steps to keep her at home. This should also give Robin a few spare moments to spend with Michelle and John. Emma is battling the flu/cold and is improving a little each day. Robin has adjusted her feeding to help tolerate how she is feeling. Emma was to the doctor today and she did not lose weight and she did not gain weight. So the doctor thought that was good. Hopefully we will be able to keep her out of the hospital now. Everyone is fighting something. John the flu, Robin starting to come down with a cold and Michelle just getting over bronchitis. So hopefully we can make it through without any more serious illnesses.
Thanks for your prayers. Love, Grandma Carol
October 9, 2009
Emma was released from the hospital on Tuesday, October 6, about 5:30 p.m. Michelle got bronchitis and we wanted to make sure it was ok to take Emma home. On Wednesday, Emma had an appointment at the U of M with a gastroenterologist. We were there over an hour and went over Emma’s medical history. Robin had everything so organized that he was able to see all of Emma’s hospitalizations and surgeries, etc. at a glance. They were going to do a couple of lab tests on her stool as she was kind enough to give us one as we got there. He also wanted to do a sweat test to rule out cystic fibrosis. Other than that, he said that we were getting the best care possible. He told us that if we knew what Emma’s genetic disorder was, we would be able to understand what might be going to happen next, but as long as we don’t, then all we can do is treat the symptoms as they come up. He did suggest that we see the geneticist at the U. But other than that, Emma is free to continue with Children’s as they are doing all he could do too. So yesterday Emma had the sweat test done. That showed negative for cystic fibrosis. We are waiting to see when we can get into the geneticist, but in the meantime, we will just continue taking care of Emma and treating her symptoms on a day to day basis. It was kind of frustrating and yet at the same time relieving. It was frustrating because we didn’t know anything more than before the appointment. Also relieving to know that we are getting the best care possible for Emma. So life will go on as before, one day at a time. So we begin another chapter in Emma’s life. Thanks for all your thoughts, words and prayers.
Love to all, Grandma Carol
October 5, 2009
Emma has tolerated her feeds all weekend. Hopefully she tolerated the one this morning. If so, we are where we want her to be. She is off the IVs. She was a happy, playful girl yesterday. Even the doctors and the nurses could tell that Emma was feeling better. They are not going to do the central line today as long as Emma is off the IVs. Robin has an appointment for Emma to be seen at the UofM gastro department on Wednesday afternoon. The plan is to have Emma discharged from Children’s before her appointment. This looks hopeful as long as Emma is still tolerating her feeds. We don’t know exactly when, but it is all looking good. Thanks for all your prayers.
Love to all, Grandma Carol
