Home with Natalie

Hello Everyone.  I, Joanna, am taking over Lyle's blogging of Natalie's progress.  Now that we have the family back home Lyle is back to work and starting school in a week.  We decided I would take over the blog.  I apologize ahead of time for my lack of eloquence in my writing.  You'll have to become adjusted to my writing versus Lyle's. :)

Natalie came home early Thursday morning June 23rd.  She was in the NICU just 2 days short of 5 weeks.  She has been home for 7 weeks and 3 days.  Lyle and I are starting to realize we have our daughter and UNC hospital is not going to call us and make us bring her back.

For starters, we have received all of Natalie's tests back including the muscle biopsy.  Everything came back negative/ normal.  In the words of her neurologist, "She is my mystery baby."  She will eventually be tested for more possible diseases but for now the doctors are simply waiting and watching her grow.  The doctors say that 6 months is the age they will start testing again, around November 21, 2011. Natalie's brain will have matured enough to allow better pictures through an EMG.  She will most likely have more labs as well.  However, another muscle biopsy will not be necessary.  Yay!

In the mean time we are going to doctor appointments for 9+ doctors.  Natalie has weekly physical therapy and developmental therapy appointments.  She will begin speech therapy in September.  (speech therapy for infants has to do with they're ability to eat and coo)  Mid-September Natalie will be switched from her foot splints to something called Dr. Brown shoes.  These shoes will be the last stage of correcting her feet.  We don't know how long she will have to wear them.

Her progress:

• She now weighs 9lbs 4ounces!
• She is accepting her bottle again.  She consistently takes 25ml, 1/3 of her bottle, orally every time she eats.  We're working on building that number up without making her too exhausted to want to eat the next time round.  September 1st she will have another "swallow study" to determine whether or not she is still aspirating (sucking milk into her lungs).  If she is not then we will be able to give her a heavier flow bottle nipple that will allow her to take more of her bottle before she tires.
• She lifted her head for the first this past Thursday morning.
• Her major joints are loosening and he muscles are getting stronger.
• She can partially smile.
• She can cry beyond a whimper and is trying to coo.
• She can roll from her back to her side.

Essentially this puts her on track of about a 3-4 week old baby, but is great progress.  Her doctors and therapists have said as long as she is progressing and not digressing the speed of her progress does not matter as much.  The moments that are most encouraging are when we see friends and family who do not see her everyday so they are able to point out how much she has changed.  It's good to be reminded how far Natalie has come.  

There are still many disease Natalie will be tested for that could have a major affect on her life, but for today we will continue on as if Natalie is simply delayed in her development.  Thank you all for reading.  I will update as soon as we find out anything else or as we conquer new mile stones.