Monday, March 23, 2009

I'm awake this morning, in a relatively quiet house, as the girls stayed the night with my parents last night. It's just Nolan and I. I plan on loving on this little guy today and resting, as last night was the first night I've slept in 3 days. I don't know why, but my worry and stress manifest itself in no sleep for me. However, last night was a good night (probably the bowl of ice cream I ate before bed:). I should really try and be productive today, but, I'm feeling the need to just STOP! and just be for once. Anyway...
As most of you are aware, Nolan has a pretty significant developmental delay. Although, since he has started physical therapy this past December, he has made wonderful strides and improvement. Each week his therapist is impressed, and Brandon and I are encouraged. Our pediatrician, last month, talked about maybe sending him to Riley's Develpomental Ped. department after he turns one. Well, this past Thursday was his 9 month appointment, and I was excited to go and share that he was smiling a lot more and show her how much he's improving physically. After reviewing his height and weight with me, her face changed and she expressed to me some concern with the shape of Nolan's head (elongated was the word she used). Like a deer in the headlights, I listened to her explain that most times when a baby's head becomes elongated (mind you, I hadn't even noticed this), it means that the plates on the top of his head have fused together...something that they are supposed to eventually do, but not this early. She then said she would refer us to a Neuro surgeon. "Why," I asked? "Because if they are fused, they will need to be surgically fixed," she said. She then went on the explain that other children (only boys that she has seen) that have this surgery recover and live healthy lives. Wow! By this point I'm short of breath and trying not to cry in front of the doctor. She writes out an order for a skull X-ray and said I could walk down and have it done right now. I headed down toward admitting and realized Nolan is about a 1/2 hour past time to nurse and I remember that I had dropped off the girls at a friends house. I decided to call Brandon and let him know what was going on and we agreed to meet at home to decide about getting this X-ray ASAP.

Ok, this is becoming much too long, sorry. Nolan got the X-ray and when I called the doctor for the results and nurse told me, "The results were unremarkable and to follow up with the surgeon." I asked what that meant and she said they came back clear. Whew! "Then why do we need to see the surgeon," I said? "For follow up," she said. While I was temporarily releived, I began to wonder and stew. I called the next day and asked to speak with our doctor directly. She said that the "unremarkable" results meant she didn't see anything that proved or disproved that the plates had fused and that's why she wants us to see the surgeon. She thought he might call for an MRI, however, she doesn't like to call for anything that would require sedating a child without them having seen the specialist first. I said, "So there's a possibility that the plates still could be fused." She said, "slim possibility."
We have an appointment with Riley's neurology on April 22nd at 10:30am. Gosh, a whole month! This is the first we've shared all this with someone other than family. I actually hesitated writing this, because it's very scary and...well, I don't know why really, but I wanted to ask any who read this to be praying for our family.

1. Pray the surgeon says Nolan's plates haven't fused and that he's fine.
2. If they have fused, pray for Nolan's safety during surgery. Then also pray for Brandon and I as the thought of them cutting into our baby's head is almost unbearable.
3. Pray for peace and distraction over the next month as we wait to see the surgeon.
4. Pray for the girls as they don't have a clue what's going on and that it would stay that way.
5. Continue to pray for Nolan and that he overcomes this development delay.

I must also list the things I am thankful for during this time as well.
1. One very evident good thing that came from us moving here is that our excellent pediatrician has a great relationship and ties to Riley. All this happened on Thursday afternoon and by Friday morning we had an appointment with Riley.
2. 2 Very supportive sets of parents.
3. That my husband has been in persistent prayer and for his emotional support for me.
4. That God is in control of this. While I still struggle when I think about what could be, there is great comfort in knowing that God is in control.

Jeremy Camp is one of my favorite christian artists. My favorite song of his is My Desire. My favorite phrase is, "This is my desire, this is my return, this is my desire, to be used by you."
I pray that during this valley for our family, God would use us for Him.

4 comments:

Laura said...

Megan, Phil and I, both, will be in prayer for you, Brandon, and Nolan! If you need ANYTHING please let me know and I will do my best to help you out. Even if you need some babysitters for your girls or a break or whatever :0) I'm here for you, friend.

Mark said...

Brandon and Megan,

Know that Stephanie and I are praying for you and your family...

It's so scary when it's your child that is sick or under watch.

When we went through all of our stuff with Sophia, I remember feeling so much painful numbness as I tried to stuff away the worry, stress, and financial burden of going to the doctor 3 times a week.

If you need ANYTHING, let us know!

Janet said...

Meg, thanks for sharing...we will be praying!!

Amber said...

Brandon and Megan--We'll be praying for you too! I keep up with your blog, and enjoy reading the updates. I pray God's healing and peace over your family!