Monday, July 18, 2011

Pediatrician Appointment (07/18/11)

I'm not totally sure what I expected out of today's visit at the pediatrician.  I left with a plethora of information and I'm still processing what we found out.

Let me first say, it was amazing that I actually got in to see this doctor who isn't accepting new patients and who specializes in kids with delays and special needs.  We initially saw the nurse who spent the first hour with us going over all of Sarah's birth history, growth information, developmental milestones, measurements and even blood pressure.  After an additional 10 minute wait, Dr. M came in to see us.  When all was said and done, it was determined that:
  • Sarah will get another MRI of her head to see what is going on in it.  She has a very small head due to failure of brain growth (Microcephaly).  This can (and is very likely) causing the delays in her balance, speech and other areas of development such as fine and gross motor skills. 
  • We have been asked to get genetic testing done.  We were offered this when she was younger and we didn't get it done... we likely will look into it now.
  • We've been referred to the Glenrose for more intense and therefore conclusive testing and assessments.
  • She needs to see a pediatric opthamologist for her eyes.
  • I need to work on stretching her hips.  They are really tight and are part of the balance issues she has. 
  • We'll go back for a three month follow up.
Dr. M continued to tell us that this is something she will {very likely} deal with for the rest of her life.  She will require helps and special education for many years.  I'm glad my home school can incorporate special education!  Until we get results from the testing though, we won't be able to know what her full potential is and what we can do about it.  He agreed that the play therapy from our local Early Intervention Program is good for her.  At this point, I'm not going to put her into a preschool/special needs school.  My biggest concern is that my sweet and quiet little girl would be so compliant that she may not receive the help she needs.  I can do that at home.  I have a little *school* of four students and with all five of her family members surrounding her, she will get all the help she needs here.   

During the initial exams, she cried.  She didn't like having her blood pressure taken or her ears checked.  She was equally upset when the Doctor started manipulating her hips.  She kept crying with these huge tears rolling down her cheeks, "I wan' go hoooooome".  Poor little girl.  

I am so thankful that Doug and Melanie (my sister in law) were able to join me at the appointment.  I am was emotionally charged to begin with and it was a blessing to have two extra people to support me as well as hear things that I may have missed. 

Earlier I mentioned that Dr. M isn't accepting new patients.  It just so happens that my beautiful sister in law is a nurse for him and she asked if he would accept and look at Sarah.  He agreed to see her and as hard as today's visit was, I'm very thankful. 


  1. I am so thankful that you were able to be seen by a doctor that has some expertise in delays and special needs. I am so sorry the visit was so stressful and not full of positive feedback. I hope that the dr is able to get to the bottom of things for you.

    I know that no matter the outcome, you will do all that you can to help Sarah reach her full potential. She is simply amazing just as she is. She is the perfect Sarah you love. (((HUGS)))

  2. Wow. I'm sure that was a lot to take in during one appointment. I'm so glad you were able to get in to see that specialist. It's great that he's being proactive about getting her the testing she needs. I'm just so sorry that you're having to do it at all, though.

    Sarah's a lucky little girl to have such a supportive family to help her through all of this. We're thinking about you and love you guys very much.

  3. Stephanie & Doug:

    I've read your blog with great interest; as you may / may not be aware we had many great years of support from the Glenrose for our firstborn. And he's doing very well now as an independent (tax paying!!) young man.

    The road ahead may be filled with questions that get answered and some that don't. A scripture verse that I swear has my nail marks in it from "hanging onto it" is 1 Cor 10:13. Whenever I read it (and still read it) I would substitute the word "situation" for "temptation". The bottom line - God IS faithful; from reading your blog I can tell you have a deep and honest faith.

    Know that you and Sarah are in good hands; your heavenly father's and the Glenrose too (not that they're on the same level :)).

    The most empowering words ever shared with me were from a staff member at Glenrose who said, "You (parents) are the best 'professional' your son will ever have." Be confident in your role as you partner with them for the benefit of your little sweetheart.

    Blessings & Hugs,

    N Graham

  4. Steph - i read this when you first posted it - & again today. What a process...
    Thinking of you!

  5. Wanted to let you know that I am praying for you. That you have strength and wisdom as you make decisions for little Sarah.
    Hugs Charlene



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