I really need to start doing a better job at updating this blog!!  No news means good news though!

Summer is upon us and school has been out for a month already!  Meghan misses her teachers and friends at school...as well as her bus driver.  We have had a busy summer so far and much of our time is spent at the ball fields for Lukes games and tournaments. 

Meghan's speech therapist called me a few months ago and talked to me about her noticing Meghan being tongue tied and suggested that I contact her PCP to have it snipped.  This is something we brought up to her doctor since she was a newborn, but it always got dismissed.  I spoke with Meghan's PCP and he referred Meghan to see an ENT.  After meeting with him, he agreed it needed to be snipped, so we scheduled the surgery, which was done mid April.  You wouldn't believe how much her speech has improved since having this procedure!!  Absolutely amazing!  Her speech therapist called the first day Meghan had therapy since the procedure and said she noticed the improvement right away!  Meghan's words aren't 100% crystal clear, but improvement is definitely there!  Now the next step is to have Meghan seen by the dentist.  This is a very dreaded appointment and I have a feeling she will need to have dental work done under sedation as I do not think she will tolerate a dentist at all doing work in her tiny, crowded mouth.

Getting ready to go back to OR for tongue tie release

After Meghan's couple of bad falls this winter, I spoke to her OT.  She suggested that I talk to Meghan's orthopedic doctor about SMO's.  We have been asking about these for a couple of years with her Ortho, but a referral for PM&R was never made.  So, I was prepared to be turned down again.  However, to my surprise, after talking with the Ortho on the phone, he agreed to refer Meghan to have an assessment for orthotics.  The assessment lasted about 20 minutes.  It was tough at times to watch the assessment as they had to see how bendy Meghan's joints are.  Let me tell you......they are VERY bendy.  She took Meghan's pinky and bent her pinky all the way back to her arm.  Meghan didn't flinch at all.  The evaluator looked at me and said she is not supposed to be able to do this.  EEK!  Her toes can also bend to her legs.  The PM&R evaluator agreed that Meghan should start with SMO's to help with ankle stability.  Her ankles are very weak due to her hypotonia.  Her ankles also roll out, which was causing her ankles to give out and that's why Meghan was falling.  After the assessment, Meghan was fitted for her new braces and she picked out her own design!  We picked up her braces a couple weeks later and within the first 10 minutes of Meghan wearing her braces, she said they make her feet feel so much better.  She mainly has to wear them to school and when she's outside to help when she is more active.  I am so happy for Meghan that they are helping her!

Meghan's SMO's

Meghan's PCP is moving from clinic care to hospital care, so Meghan will start seeing a new doctor in July.  We have chosen a new PCP and I am very excited to have him on board with us.  He has seen Meghan a few times in the past and is very thorough, so I feel this will benefit Meghan's care greatly.  We said our good byes to Meghan's PCP today, as she had her 5 year well child check up.  She had 2 shots, but he gave her a sucker after her shots.  Meghan of course was thrilled about that!  Meghan weighed in at 24.6 pounds and is just shy of 35" tall!  The only concern is that it appears Meghan has a slight curve to her spine and he told us to talk to Meghan's ortho at the appointment in September.  Otherwise, a clean bill of health!!

Upcoming appointments are ultra sound, Endocrinology, Genetics, orthopedics (as well as a check up with PM&R to check braces), and neurosurgery.