Wednesday, December 11, 2013

Parent Appointment (12.10.13)

Yesterday afternoon, I had the opportunity to meet with Sarah's pediatrician. By myself. Without my sweet (screaming) daughter. It was probably the best appointment I've had with him. The clinic was closed except for the doctor, myself and a few nurses.

When I sat down in his office, Sarah's chart was set out and open already, which was kind of nice because I felt he was prepared. For a while now, Sarah has been displaying some really odd symptoms and I needed to voice my thoughts and see what Dr. M's ideas were on it. Some of these things are:

  • flaps her arms
  • spins (and doesn't appear to be dizzy)
  • she doesn't make good eye contact
  • no understanding of fear and danger
  • laughs inappropriately
  • insensitive or oversensitive to pain
He showed me Sarah's head circumference chart which indicates her head size to be markedly lower than the average five and a half year old. He said that out of 100 kids, 96 of them would have an average sized head, two would be above average and two would be below. Sarah would be one of those two and she's an extreme case. Now, because her head is so much smaller than average, the result is severe delays in all areas of development. These include fine and gross motor skills, social interaction, auditory memory (remembering what she hears), visual memory (remembering what she sees), self help, expressive language (what she can speak) and receptive language (what she understands).

So, in a nutshell: all of Sarah's delays are due to the extreme Microcephaly: (Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing. Microcephaly can be present at birth or it may develop in the first few years of life)

Depending on the severity of the accompanying syndrome, children with microcephaly may have:
  •  or learning disability
  • delayed motor function and speech
  • facial distortions,
  • dwarfism or short stature,
  • hyperactivity,
  • seizures,
  • difficulties with coordination and balance, and
  • other brain or neurological abnormalities.
Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference.
Previous notes taken from HERE
Due to her immaturity (Dr. M placed her at about age 2), she might display autistic-looking "symptoms" only because of the delays that are reflective of the Microcephaly
He told me that she will always be fairly behind kids her age and the gap will continue to grow as she gets older and that's because she's developing at a much slower rate than others. She also very likely will be dependent into her adulthood. Maybe not, but he said to be prepared for a lifetime of supporting her.

Sarah is still really small for her age and is severely disproportionate which is why she looks like a little adult. If you don't know what I mean, the next time you see her, you'll that she doesn't have the large "bobble" head that other kids have. 

So, when all is said and done, I am really thankful I had to opportunity to talk to Dr. M without a (loud) distraction. He is blunt, honest, very good at what he does and has a true love for kids, including Sarah. I also know that nothing has changed and that Sarah is still Sarah. Homeschooling her is and for now, always will be the best thing for her because I can follow her lead and teach her what I think is relevant to her. I am blessed to have friends who are supportive and encouraging, including someone who texted with me until 10:30 last night offering me some hopeful and reassuring insight to what I learned today. She's very appreciated and I am very thankful for her and the time she gives me! 

This is what recovery from a Dr. appointment looks like!

So how are we doing? Doug and I are now processing the idea that Sarah may possibly be dependent on us (or someone else) for a very long time, possibly forever. I think both of us lost some sleep last night as those were the thoughts that consumed us. Sometimes it feels like I take two steps forward and then one step back as far as my faith walk goes. 

The verse that keeps coming to mind is found in Jeremiah 29:11 - For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. This is the foundation of what keeps me going on the rough days when I feel like the weight of the world is on my shoulders. 

The song The River by Brian Doerksen is one of my favourites and seems to be ringing true for me today. If you have the chance to listen to it on You Tube, you should. Here's the lyrics:

To the river I am going bringing sins I cannot bear 
Come and cleanse me, come forgive me Lord I need to meet you there 

In these waters, healing mercy flows with freedom from despair 
I am going, to that river Lord I need to meet you there 

Precious Jesus, I am ready to surrender every care 
Take my hand now, lead me closer Lord I need to meet you there 

Come and join us, in the river Come find life beyond compare 
He is calling, He is waiting Jesus longs to meet you there 
He is calling, He is waiting Jesus longs to meet you there 

Precious Jesus, I am ready to surrender every care 
Take my hand now, lead me closer Lord I need to meet you there 
Take my hand now, lead me closer Lord I need to meet you there


  1. The description of your daughter sounds a lot like my son. I knew they had similarities by reading your blog, but this particular post reminds me of our situation with Kyle. We have also lost sleep with our minds consumed with the future and how we'll most likely have to support Kyle for the rest of his life. I've been wanting to do a blog post about that but have been putting it off, knowing it will be a very emotional post to write! On a different note, have you and your husband looked into a Special Needs Trust? We set one up for Kyle a few years ago, knowing he would need more care in his future than a typically-developing child.

  2. Even though you probably already suspected what the doctor would tell you, I'm sure it was most likely still pretty devastating to hear it confirmed. I remember when we first realized that Bethany was not going to develop typically and asking all her doctors if she would ever talk or mature. None of them ever had ever heard of a case like hers so none of them would ever commit to an answer. Well 13 years later, I think we have our answer! I'll keep you all in my thoughts and prayers. I love the verse and the song lyrics. I'll have to listen to it on youtube.



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