Case Study

Case during his ECG

Spreading the word on facebook and the blog leaves much to be desired, and yet here goes:

Yesterday we met with Dr. Sharon Cooper (http://bit.ly/aYEQAe), a Pediatric Development Specialist about Case’s delay in meeting his motor skill milestones.  As many of you know, Case was referred at his 4 month well-baby checkup to Early Intervention for his poor head control, developmental delay, and overall hypotonia (low muscle tone).  We have been meeting on a bi-weekly basis with the Early Intervention Program Manager, Kim Moser, part of the Pediatric Evaluation and Treatment Team at Womack (PETT) and have also been seeing a Physical Therapist (Michele Hurley of Move With Me Physical Therapy) on a weekly basis since late July. As many of you also know, we began our own versions of physical therapy with Case around 3 months when we (mostly me, the worry wart) initially thought something was up.

We had heard great things about Dr. Cooper prior to our appointment and were not disappointed.  Our appointment consisted of an in-depth q&a starting from my pregnancy until now where she typed up everything we said  (no pre-made forms here) and then took a long look at Case.  We, of course, came well-prepared with a typed list of concerns and questions that we shared with her just prior to the appointment.  She took the time to go through each of our questions, line by line.  The result?  She ordered an intense workup of diagnostic tests to eliminate any of the major concerns (neurological/metabolic disorders mostly).  After the appointment, Case and I headed down to Cardiology where Case received an ECG, then to the lab to draw blood for a comprehensive metabolic panel, high resolution chromosome analysis (one form of cytogenetic testing – that will take a month) and a basic CBC and Differential (complete blood count and white blood cell count).  She also ordered referrals to Audiology for a hearing test (hasn’t had one since birth) , Ophthalmology for a vision test (to assure that his optic discs are normal because of a little bit of delay in his visual tracking) and an MRI.  Finally, she got us an appointment at the Dermatology clinic at UNC Chapel Hill to get his eczema under control.

And now we wait…

In the meantime, I’m scheduling his MRI (for which he will need to be sedated – poor buddy), his hearing and vision tests, and the derm appointment and cracking the whip at home with round-the-clock PT (slave-driver is Brian’s new pet name for me…sweet, huh?).  We are grateful for all the prayers and warm wishes.  We definitely have a journey ahead of us.  Fortunately, we have a lot of motivation (duh!) and a ton of support.

Updates as we know more…

Advertisements
Tagged , , , , , , , , , , , ,

10 thoughts on “Case Study

  1. Sarah says:

    You’re such a good mom. I know that I would be a worry wart, too. No matter what is going on with your child you are. I hope you hear some news soon, for comfort’s sake. Case is such a cute little guy…keep cracking the whip, slave driver. We’ll keep your family in our prayers.

  2. Sonya says:

    Thinking of you and praying for Case! Let me know if I can help in any way…seriously, I will send down dinner on dry ice if needed or ship you therapy supplies 🙂

  3. Marilyn says:

    Caitlin…your Mor mor tried to explain this to me and didn’t quite make it clear. What a great idea to have this site! Sounds like you have great medical sources and everything that can be done is being covered. Our prayers are with you and your family.

  4. Deidre Simmons says:

    This is terrific …… I forget to go to your blog which is awesome dear daughter. Thinking and praying and grateful for your incredible circle of friends, the attention of WOMACK (I know it is love/hate but they are spot on here ), and the love you and Brian have for each other an Mr. Case. He’s a strong little boy with a magnificent disposition who is going through much in his few short years of life with great aplomb. Love you all.

  5. Kathleen says:

    We are hopeful and most optimistic. You two have the stuff for this journey, wherever it takes you and Case.
    Prayers and love and hugs.
    Kathleen and Andrew

  6. Mike says:

    Caitlin, Wow, you are one strong ‘slave driver!’ Praying for you all! Love, mike (from DC) and lee (from HI)

  7. Jeanne says:

    Caitlin, in the Land of Findlay genetic/family history:
    John had similar central hypotonia issues as an infant/toddler/preschooler.
    Similar work up: all negative.
    Physical and occupational therapy were the very best things for him: am a BIG BELIEVER in these folks!
    When Case gets to learning how to read, recommend phonics, NOT “whole language”—part of the processing problems surfaced at this point [learning to spell/read] and thank goodness we found a tutor who turned everything around for him: he is by far the most prolific reader!
    btw, Sharon had a type of ‘silent’ lazy eye undetected till she was 4 years old!
    Why a dermatologist? You DO know I’m in peds derm at Hopkins?—how can I help?

  8. erin kelly says:

    you are your sons biggest advocate, so the slave driver mentality and lenthgy and i’m sure thoughtful questions you prepared for this doc visit sound completely logical. you and brian are strong, determined parents;, levelheading going into (and coming out of) doc cooper’s office. incredible, simply incredible.

    thanks for sharing these details. i cant share any medical knowledge nor do i have first hand experience with this type of issue, but we kellys can provide you with support, hope and keep the findlays in our prayers. love you guys. erin

  9. Tina Shultz says:

    Thinking of all of you. Feel the hugs? Hope so. Love Tina

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: