We've had a busy couple of weeks!  A few weeks ago, we had our big therapy team meeting.  At this meeting, her therapists went over Meghan's test results.  It is so awesome to see the progress on paper that Meghan has made since last year!  She is doing a super job!  While she is still developmentally delayed, she is making progress and has never plateaued - and that is what matters the most.  We also learned that Meghan will graduate the birth-3 program when she turns 3 in June.  If she would've scored super low on her testing, she could've qualified for extended services during the summer months.  Not going to lie, I tear up just thinking about Meghan's last day of therapy because her therapists have been such a huge part of our life for the last 2.5 years.  They have unbelievable patience and knowledge and I will forever be thankful for them.  We did find out that Meghan will start ECSE (early childhood special education) in September at the public school.  She will go to school 4 mornings a week.  She will receive all of the therapy she gets now, but will have therapy at school instead of at our home.  Going to school will be a HUGE change for Meghan (and me), but I know it will definitely help with her social skills and is the best thing for her so she doesn't fall farther behind.  The nice thing about the class Meghan will be in is that a couple of the other kids are smaller in size too.  Her class can have up to 8 kids.  We started writing her IEP plan and will finish the final details when we have a team meeting at school in August before school starts.

Today, Meghan had a couple appointments in the cities.  She had an ultra sound and a check up with the Endocrinologist.  We were a little shocked when we found out that her weight and height has stayed the same since our visit with the Endo 6 months ago.  Miss Meghan weighed in at 19.6 pounds today (shoes off/clothes and diaper on).  The original plan for today was for Meghan to have her IGF level retested and if her level was still low, she would've then talked about doing a growth hormone stim test.  However, the plan changed when the Endo saw no growth from 6 months ago.  So, the doctor decided to skip over having her IGF level retested and is going right to having a growth hormone stim test done.  This is a test that takes several hours.  We will stay at the short stay unit while this test is performed.  This is what I know about the stim test:
 A stim test shows the amount of growth hormone your body makes. Not enough of it may cause one to grow slowly.
A stim test is used to test your pituitary gland. It helps the doctor see if this gland is working well. The pituitary gland makes growth hormone. The stim test shows whether your gland makes enough growth hormone. During the stim test, you receive special medicines by IV to trigger the pituitary gland to make growth hormone. In some people, the gland does not make enough growth hormone in response to the medicine. This could mean you have growth hormone deficiency, or GHD.

 

The pituitary gland releases growth hormone in pulses or bursts, mostly while you sleep at night. During the day, not much growth hormone is produced. To see whether your body makes enough growth hormone, the pituitary gland must be triggered to make it. Then the doctor can see how much is made. A stim test is not like most blood tests. A blood sample is not taken just once. Instead, the doctor measures growth hormone by taking many blood samples throughout the coarse of the stim test. The test usually takes between 3-5 hours to complete.  After the test, the blood samples are sent to the lab. There, the amount of growth hormone will be measured.  We should get Meghan's results the next day.  If Meghan does have GHD, we will consider starting growth hormone therapy, which involves daily injections until puberty.  If she doesn't have GHD, her doctor said she would consider trying growth hormone therapy to see how her body reacts to it.  While we don't look forward to giving her daily shots, I think we are both at the point where we are willing to try this to see if it helps her grow.

In the mean time, she would like us to add extra calories to Meghan's meals.  She would also like us to add carnation powder to Meghan's milk for extra calories.  She would like us to meet with a dietician and we are hoping this can be done while Meghan is having her stim test.  The stim test should get scheduled in the next day or two. 

She wasn't sure about the ultra sound at first today.  She held onto my fingers for dear life!

A much happier girl now that no one is poking at her.  Waiting for the Endo doctor.

       

Today we celebrated Meghan's 2 year Shuntiversary!!!  We are so proud of how far she has come the last 2 years!  This is a pretty big anniversary, because 50% of shunts will fail within the first 2 years.  Phew!!  We made it this far and I KNOW we'll make it many, many more years with this shunt!

How did we celebrate?  By spending the evening at the doctor's office, in true Meghan fashion :)  Miss Meghan has had somewhat of a rough month.  She had strept a few weeks ago, had the flu last weekend, and now has strept again.  She is on a stronger antibiotic now so hopefully that does the trick!  We also had a super yummy DQ treat after the doctor visit.  This weekend, we'll take the kids to a hotel to have a weekend of fun and to celebrate this milestone, and also Luke's awesome report card!!  Looking forward to a weekend away!

 Meghan resting after her shunt placement on 4-7-2012

 

Meghan (2 years old) at the Hydrocephalus walk