Emma Kissock – Emma’s Syndrome

Yesterday Emma started a new feeding schedule.  They are now doing bolus feeds.  Emma is getting 5 ozs. in an hour about 5 times during the day.  Then no feeds at night.  So far she seems to be tolerating this.  Last night Emma actually slept for 6 hours!  Hopefully this will continue now.  Today Emma had an appointment with the hip doctor and he gave us the good news that Emma’s hip is stable and that she should now see a rehap doctor to help work on toning and getting it to work like the other one.  The next step will be to do a swallow study to see if Emma will be able to be fed by mouth.  We are all excited that Emma is progressing and can be off of all the tubes, etc. for awhile each day!  Robin says, “No strings attached!”
Love to all, Grandma Carol

Emma has gained 2 lbs. 6 oz. in the last month.  She now weighs 16 lbs. 11 oz.  Emma has her moments when she is still fussy, but that is due to gas.  She hasn’t rolled over since the first time, but she is gaining strength and wants to try to sit up.  Emma has been home for 5 weeks now!

Love to all, Grandma Carol

On Sunday, late afternoon, I was playing with Emma on the floor and she rolled over.  She had both of her arms on one side, but had her feet flat and was laying on her stomach.  I was lucky enough to have the camera near, so I grabbed a picture and then went to the other side to take another picture.  I was ready to take the next picture when she rolled back unto her back.  She was on her stomach for about 3 minutes.  Later in the evening, she rolled to her stomach and then rolled back almost as fast.  So she has learned how to roll.  She is rolling to her left side.  Robin also made a comment that Emma has gained weight too.  She is just over 15 pounds now.  Robin also called and said that Emma slept for 8 hours last night!  She did fuss for a few minutes a couple of times, but Robin was able to go right back to sleep.  Emma is also wanting to be held in a sitting position more.  So, I think Emma is starting to get more strength in her body.  Just a proud grandma!
Love to all, Grandma Carol.

By the generosity of a member of their church, Robin, John, Emma and Michelle, as well as Robyn and Solomon, the whole family is on their way to the Twins game.  With the tickets they were also given a parking pass, so Grandma Carol went over and gave Emma a bath while the rest got ready and then they are using Grandma’s car so that they could all go in the same vehicle.  They went early so that they could watch the batting practice and Michelle was hoping that they would be able to get some autographs.  Michelle has a twins cap she was getting autographs on and they have a twins baby blanket that they are going to get autographs for Emma.  So everyone left excited.  The tickets are right behind the dugout, so they are excellent seats.  I hope it is a good game.  Emma was fussy, but the home nurse wants Robin and John to make sure that Emma gets the pain meds regularly so that they can out rule pain as a problem.  If she is still fussy, then they may have to do allergy testing to see if Emma is allergic to the formula or some of its ingredients.  I have the feeling that it could be an allergy as Emma keeps rubbing her eyes all the time.  I’ll post more later.
Love Grandma Carol