Emma Kissock – Emma’s Syndrome

Brad Bombardir and Nordy from the Minnesota Wild visted Children’s Hospital today.  Here is a picture of Emma with them.

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.

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

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

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

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