Snuggling and other stuff!

 

I have a sweet story to tell you…..

It was about 6:30 am, which meant it was about wake up time for the girls.  Jocelyn started to fuss in her crib so I rushed in there to try and keep her from waking up Abby.  I scooped Jocelyn up and heard a little voice say,  “Mommy can Jocelyn come snuggle with me?”  And so they snuggled.  At first I stood close to make sure Jocelyn would be OK.  I soon realized she was fine and left my two little girls snuggling together in bed.  From the other room I heard Abby telling stories, hiding under the cover games and lots of laughing……I am so glad that these sisters have each other:)

Onto other things, “things” that occupy my mind day and night.  I love my blog because it is way for me to let many of these “things” go.  I also love that you all can know what is happening in our lives.  When Jocelyn was first born I used this blog to keep you updated on how she was doing each day.  From her first days it apparent to me and to many of you that she was a strong girl……

Jocelyn has had many doctors appointments lately to follow up on “things”.  I think she was weighed 3 times this last week and at 15 months she weighs anywhere from 17-18 lbs and has a height range of 27 inches- 28.5 inches!  She is growing, but slowly, just like her sister:) 

There was one bummer doctor visit so I will start there.  Every 6 months we meet with cardiology.  At birth Jocelyn had an ASD.  In very basic terms these are a bunch of little holes in her heart.  The doctors (and us) had really hoped that these holes would close on their own.  They have not:(  This week we met with cardiology where they looked at a recent xray and did an EKG.  The xray showed that her lungs had a higher than normal amount of blood in them, which tells them that these holes are still there.  Since they haven’t closed by now, the doctor felt that they most likely would not close on their own. In 6 months she will have a sedated echocardiogram (she had one at 7 months) to look more closely at these holes and their location.  At this time the doctors will discuss a plan for repairing these holes.  Typically kids have an ASD with one hole, Jocelyn has many little holes.  If the holes are positioned “correctly” they will go in through her femoral artery (on her leg) with a catheter and use an umbrella like device that will open and lay against these holes to close them.  If they are not positioned right she will have open heart surgery (gasp).  This surgery will most likely happen when she is 3 years old.  By repairing these holes when she is young her body will heal the damage that has been done to her heart and lungs.  This isn’t hurting her now or slowing her down.  Ugh, another reality check of issues that we will deal with:(  After being really down about this for a day I realized I can’t spend everyday worrying about, the surgery she will have when she is 3.  She will be OK, she is STRONG!

We also went to the down syndrome clinic last week and met with a team of doctors (LOVE THIS approach to medicine).  First we met with ENT (ears, nose and throat).  They were happy that Jocelyn ears looked good.  No fluid, no need for tubes:) She does need to have a routine sedated hearing test soon. Then on to the social worker who checks on our family to make sure we are handling all of “this” ok….we are fine, thank you for checking:)  Then to the dentist.  They recommend kids have a “dental home” by age one (Abby is 3 and going tomorrow for the first time).  Kids with DS have interesting dental stuff.  Missing teeth, pointed teeth (have you seen Jocelyn’s daggers?).  She will see a dentist in a couple of weeks.  Then on to Physical therapy and Occupational Therapy.  They were pleased with her development.  We will continue to see a PT once a week and we are going to wait on Occupational Therapy.  Next up was the speech therapist, she was AMAZING.  I would really consider driving to San Diego to see her.  She had some good ideas of stuff to work on.  Last was the general pediatrician who reviewed our day and did an overall check of Jocelyn…..PERFECT!  Since we were at Childrens hospital we decided to go to their lab to have Jocelyn's routine thyroid test done.  Just got the results and they looked good. 

If you made it through all this medical yuck, good job!  I have a funny story to tell you….

This morning I told Abby that we were going to have some boysenberries for breakfast.  She looked at me disgusted and said, “NO mommy I want to have GIRLSenberries.”  She is one smart cookie!

 

HAVE A HAPPY DAY!