This was a very interesting weekend. Emma had started to tolerate some feeds, then she quit and today they are trying again. The doctors are now calling what Emma has as “bowel dysmotility”. In terms I can understand this means that her bowels are not working all the time. Thus causing the bloating, cramping, gas and constipation. This can also cause fever and malnutrition if not treated. So to us this means that she is fussy and not tolerating her feeds! May not be what we wanted to hear, but we at least have something to deal with. There isn’t a correction to this as it is an intermittent problem and all they can do is treat the symptoms (which is what we have been doing anyway). So they are making sure she is pooping and making room for eating. What a deal! So what goes in, must come out! So, this could be something that may continue to happen, depending on Emma’s body. So, hopefully Emma will be able to start tolerating her feeds so that she could come home. Earliest possibility would be by the weekend or first part of next week. I refuse to say which, because if I do, Emma will prove me wrong. I will let you know how she is doing when I get an update. Thanks for all your thoughts and prayers. Love to all, Grandma Carol.
September 28, 2009
September 25, 2009
So far, all the tests have come back negative for any virus. Even the endoscopy did not show anything. So, they put in a pik line so that they can give her nutrition through the IV. They tried feedings on Wednesday evening, but her stomach got too big. It was finally down this morning, so they are going to start giving her 20 ml every 3 hours. At this rate it will take a long time to get back to her normal rate. I just talked to Robin and the first 20 ml went, but it did increase her stomach a little. They gave her another 20 ml a little bit ago. Hopefully she can tolerate some of this. I guess we will just have to wait to see what happens. Don’t know much for now.
Keep us in your prayers. Thanks. Grandma Carol
September 22, 2009
Not a lot of news. Friday she just wanted to either lay or be held. Friday night Emma was running high temps. It wasn’t until early Saturday morning that they went down. Saturday she still wanted to be held at times, but wanted to sleep during the day. In the early morning, she was ready to play for awhile. She still had lots of gas in her stomach so feeds were still held. Sunday am they took another x-ray to see what her stomach was like – more gas – so no feeds yet. Emma slept most of the day on Sunday and all night Sunday night. On Monday afternoon they started a slow drip for feeds. By late evening, Emma’s stomach got bigger and was uncomfortable, so they stopped the feeding. Emma’s stomach is still now down today. So no feeding today. They are going to do an endoscopy on Wednesday to see if they can find out what is going on. So we won’t know much before the end of the week. They have done all kinds of tests to see what they can find out. So far, nothing is conclusive. All they know is that it is gastro-intestinal in nature. So we are just waiting for Emma to decide that it is time to get better.
Love to all, Grandma Carol
September 18, 2009
Emma was admitted to the hospital yesterday. She had cold and flu symptoms and was not tolerating her feeds. They are running the tests to see if she has a virus, but we won’t know that for a couple of days. Just because Emma is a child at risk, they started her on Tama-flu. She doesn’t want to do much of anything right now, so we know she isn’t feeling good. She is running a temp as well. Not much to say now. I’ll let you know more when I hear something.
Love to all, Grandma Carol
September 2, 2009
First, I must apologize for not doing updates for awhile. Things have been rather hectic at the Kissock residence. The Kissock’s will be moving to a new residence over the weekend, so I have been trying to help get them packed and ready to move.
Emma has been fighting infections again. She is also teething so some days are better than others for her. Her last bottom tooth appeared on August 27th, but wants to play peek-a-boo. The other two front teeth are coming too. You can tell they are just below the surface. I’m sure they will play peek-a-boo as well.
Emma had an appointment with the Infectious Disease Doctor to see what we can do about the infections. Well, he wasn’t really concerned. He said that because of Emma’s genetic disorder, she is special and needs to be treated that way. The doctor looked over Emma’s history of infections and surgeries, etc. and asked Robin what she thought worked for the infections and what didn’t. She told them what medicine worked for Emma and he said that he would put Emma on that medicine daily. By taking this antibiotic daily, it eliminates two other daily medications. So that will help too. He said that the combination of the formula she is on and the genetic disorder, that Emma will just need to have this daily dose of antibiotics. He said he would rather see her home and happy than sick or in the hospital. If things change for Emma, Robin is to contact him and he will re-evaluate Emma. He said that just looking at Emma, he would say she had the Cornelia Delange disorder. But, Emma has been tested for that and that test was not positive for it. The doctor said that she has many of those same symptoms. He kept referring to Emma as “special” which made us feel good because we think she is “special” as well.
She weighs about 22 pounds and is about 31 inches long. With all the therapies, she is getting stronger. She has a very firm grip too. So beware when she grabs something. It won’t be easy to take away. Emma was strong enough to bend Michelle’s glasses when she grabbed them. So we had to get new glasses for Michelle.
Emma knows when Mommy and Daddy are due to come home and doesn’t want to sleep and when she hears the door open, she turns so she can see them come in. Then she has the biggest smiles for both of them.
At the moment, both Robin and Michelle have sinus infections and on the verge of bronchitis. So they are both on medicines as well.
So, we continue to pray and take one day at a time. Thanks for your continued support.
Love, Grandma Carol
July 27, 2009
Good news. Emma was discharged from the hospital Thursday about 8:30 p.m. She was a happy girl when she got home. She rolled around on the living room floor and tried to get into everything. Everyone was all smiles and happy to have Emma back home. Thanks for all your support and prayers.
Love, Grandma Carol
July 18, 2009
Emma was admitted to the hospital yesterday. She cryed when they tried to feed her, she cried when she was in her crib, she cried everywhere except in someone’s arms. So Emma saw the pediatrician and then Robin took her to Children’s ER and they admitted her last night. They have her on an IV to keep her hydrated. When they checked her blood glucose last night, it was down to 35. So they immediately gave her some sugar water. They are maintaining her levels with some sugar in the IV fluid as well. The tests showed that the C.Dif. is back too. So hopefully we can get her back to her cheerful self before Uncle Russ’ wedding next weekend. I will let you know when I know more.
Thanks for praying for Emma.
Love, Grandma Carol
July 4, 2009
John was able to take Emma home right after lunch today. She does have c.dif. infection and is on antibiotics for it, but we are used to dealing with that at home. She was back to her playful self and wasn’t having any other problems, so they said that she could go home.
Happy 4th of July! Love, Grandma Carol
July 2, 2009
On Thursday afternoon Robin took Emma to the clinic as she was sleeping a lot, drooling a lot and not being Emma. She then spiked a temp. The doctor at the clinic said to take Emma to Children’s Emergency room as Emma did have a very red throat and Children’s knew Emma better and they should be the ones to prescribe any medication that Emma needs. So Robin took her and they said that they wanted to keep her at least overnight for observation and to run tests to see if they could tell what she was fighting. They are checking for flu, c-dif, urinary tract, etc. So, Robin is at the hospital with Emma. Robin’s sister Maddy is here for part of the summer, so she will be with Michelle part of the time Friday. Of course, I am off on Friday, so I will be someplace. When we know more, I will post another update.
Love to all, Grandma Carol
June 8, 2009
Time for another update
Posted by emmakissock under Emma, Grandma Carol, John, Michelle, Robin1 Comment
I apologize for not updating sooner, but things have been rather hectic both for Emma and for me at work. Emma had her first visit to the dentist. They confirmed that Emma did have 10 teeth and it looked like there were more coming. They were not concerned that the front ones are not in yet. The dentist said that they would come when they are ready. The dentist said that Emma has an inquisitive tongue – which made it more difficult to look at all of the teeth, but they managed to do it. On Monday, May 25th, Emma got tooth number 11. Emma has had several other doctor appointments, and they are going to put Emma on a preventative antibiotic for 7 days at the beginning of each month to see if they can stop some of the infections. They also think that Emma may have some kind of allergy which would explain some of her wheezing. So they are giving her allergy medication at night. It all seems to be helping. We sent Robin to Georgia for her sister’s graduation and Grandma took care of Emma and Michelle. John had to take care of himself and did help with transporting Michelle to girl scouts. This was a surprise for her sister, so I delayed any posting until she got back so that I wouldn’t spoil the surprise. Robin was gone for 5 days. Last Wednesday, Michelle got sick at school and Robin took her in to the doctor to find out that she had strep throat. On Thursday Emma starting getting fussy so Robin had her tested too. Emma’s was negative. So probably just cutting more teeth. Grandma stayed all day Saturday and overnight so that Robin could work and then come home and get some sleep. Emma was fussy until late afternoon when she finally was ok to play for short periods. Hopefully we are on the road to good health again. Emma has an appointment to get her ankle braces fitted. Emma is making some progress in holding her own head up and sitting alone for a few seconds before she topples over. She is even learning how to get up on her hands and hold herself up that way too. We are making progress, even though it is in small steps. We are very happy that we have been able to keep Emma out of the hospital. Emma is starting to sleep about 6 hours at night so that helps too. Michelle has her last day of school on Tuesday, June 9th. I will post another update when more things happen.
Thanks for your support.
Love to all, Grandma Carol
