The Harnisch Family

The Harnisch Family

Dec 14, 2010

Macy's 1 year Well-baby Check!

You're going the wrong way kid!  You're not supposed to be losing weight you're supposed to be gaining!
  *Height & Weight - She dropped since our last visit down to a whopping 13 lbs 10 oz.  (Yikes that's below the 5th percentile on the D.S. Growth Chart)
She is 26&1/2 inches long.
Her decrease in weight baffles us a bit as she has been eating really really well the last few months.  She nurses well and eats her pureed food like a champ (fruits, veggies, oatmeal & meats).  She has to go back in 3 weeks for a weight check.  looks like it will be a while before she makes the change to a forward-facing car seat  :-(

* Thyroid - As your recall her Thyroid "labs" came back normal, but the Doc is going to examine the #'s closer as we may need to recheck that every couple months.  This may link to her low weight & possible slowed bone growth (large soft spot), etc

* EEG - Our pediatrician is not satisfied with the brief phone call from our neurologist's nurse that indicated "Low brain waves in non-specific frontal areas"...what does this mean!?  We certainly need and deserve further explanation along with a more conclusive "what, if anything, do we do from here"?

* Heart - Rewind back to her first 48 hours of life.  Remember she was medically transported to Children's Hosp. to have an Echo cardiogram done?  We were thrilled to learn that she was free of any major structural heart defects.  Praise the Lord right?  yes, indeed.  We quickly began addressing other, more pertinent, medical issues (bowel obstruction, low blood sugars, low temps, high levels of billirubin, etc). Put on the back burner, however, was the VSD the Cardiologist detected (Ventricular Septal Defect) - another word for "Hole in Heart".  That night is still a blur to me, so it was eerie revisiting it with the doctor yesterday.  The reason there was not major concern, was because this hole was and is tiny.  It will always be there.  She will be (as Dr. Keller put it) one of the 5% of people walking around with a hole in their heart.  VSD's are very common among individuals with Down Syndrome.  She has a slight murmer that gets a little louder when she is sick.  But, apparently, as long as this murmer remains soft we should not have anything to worry about.  okay.

* All things considered, Macy is doing amazing!  She continues to make incredible progress and is very healthy (free of illness - knock on wood).

* Physical Therapy visit - In the afternoon, Penni, her Early Intervention PT came to the house and worked with Macy a bit.  Macy was crabby and worn out from her vaccinations a couple hours prior.  In any case, she gave us many good tips, techniques and exercises to encourage and motivate Macy.  She agrees that Macy has a great deal of strength (she can actually bare a lot of weight in the standing position for a good amount of time and can get herself up on all fours from tummy time).  But, Penni did note that she is on the low end of the spectrum (the DS spectrum) when it comes to muscle tone.  That stung a little  :-(  But I suppose that's just one persons opinion.  I am optimistic that it will turn around!

To end on a good say "Macy loves Patta-cake" is the understatement of the century.  She also LOVES to play "Row Row Row Your Boat", "Peek-a-boo", "Sooo BIIG", and clapping games.  She kind of says dadda and momma.  And is beginning to pick up on baby signs.  We sign everything with her and she really responds well to "MILK", "MORE" and "EAT".  She is not quite coordinated enough to perform the signs herself, but you can see her wheels turning, she is cognitively aware that's for sure...and...
she's getting her first TOOTH!!!    :-)

1 comment:

  1. I meant to ask you about teething last week. So exciting that she got her first tooth.
    Know that if you ever have questions or concerns about Macy's heart, Tami my neighbor, is always available to for a girl dinner or coffee to explain more. :)