Thursday, May 16, 2013

HOPEFUL

As a mother, the worst thing is for your child to be struggling or hurting.
I want nothing than for my children to know comfort, success and love throughout their lives.
You think, being that you ARE their parent, that you are enough. You are enough to comfort them, to help them flourish and to grow. To admit that something might be wrong or that you are not enough, is something that could physically and emotionally just run any parent to the ground in distress.
 
Well, here it is:
Gabriel, who is 11-months-old today, is struggling and we are finally admitting something is wrong.

In March I started noticing some odd changes in him. He was sitting up and starting to roll and scoot around. He stopped those kind of suddenly. It was just out of the blue.
He hasn't really recovered.
He can't sit up unassisted or without having pillows behind him. He doesn't really want to sit up. He doesn't crawl or appear to want to crawl. He doesn't really roll. He hasn't shown interest in standing, moving around on his own, feeding himself, eating more solid foods, playing games like peek-a-boo or clapping. He doesn't show interest in putting anything in his mouth other than his fingers.
He really just doesn't do a lot.
He screams...a lot. It is really loud. It is not a scream like he is trying to explore his voice, this is a scream of anger and frustration. It hurts our ears and our hearts.
He thrashes around. He throws himself backward with immense force, he will headbutt me in the jaw and make my eyes water, he has brought out bruises on my chest from thumping back and forth while I'm holding him.
He lays on the ground and sucks his fingers.

I voiced lots of concern, I'm sure some people heard me talk about how he was acting maybe two or three times in a conversation.
I was worried about him. Should I be worried about him? I took him to the doctor. Should I take him to the doctor again? He seemed really good today. Did I notice that he seemed worse today?
We went multiple times to the doctor in the last three months. We go to a clinic where the doctors all work together and you may not be able to get in to see your doctor on a particular day, but not to worry there is another one who can help.
Each doctor listened to what I was telling them and checked him out. He was diagnosed with and ear infection and a sinus infection until about three weeks ago I really pried and pushed the doctor we were seeing to notice if something was wrong.  I think they really started to agree with me that it wasn't that he was sick, there was some concern.

After watching him, working with him all weekend, and just watching him emotionally all weekend I decided to take him in again on Thursday. I stressed the need to see our regular pediatrician and got in for her last appointment of the day.
As I sat there, holding my squirming, frustrated baby I felt such dread. There is nothing worse than that feeling, when you know something is wrong and you're just waiting for someone to tell you that, yes, something is actually wrong.
So our doctor got there and I had what I like to call "word vomit" where I basically just poured out every fear, frustration, and worry I'd had building up the last three months all over her medically licensed lap.
As soon as I had said all I needed to say she gave me a hug and said, "I'm very worried too. Lets figure this out."
So she evaluated him. She went over a checklist of probably 30 things a 10-11 month old child should be doing. Every time I told her "No" she tested the development herself on Gabriel. My heart sank lower and lower as with each question I realized how much I was saying, "No."
No he wasn't crawling.
No he couldn't or didn't really pick up toys or food with his hands.
No he wasn't sitting up.
No he wasn't standing or walking along furniture.
No he wasn't interested in game playing.
No he wasn't eating solid foods other than baby food.
No he didn't hold his bottle or a cup.
No he didn't mimic what I was doing.
No he didn't say any words other than, "Ma ma" or "Da da."

When the evaluation was completed, I would say about 80% of what was asked Gabriel could not do.
As a parent hearing that, and I mean really hearing that for the first time, I will tell you there is no comparison to the amount of fear that echoed into the depths of my soul.

Gabriel has regressed back to the developmental state of a 5-month old. That's really all we know at the moment.
 
One important thing I think I've learned in the last three months is the importance of getting in to see JUST the boys regular pediatrician. Yes, the other doctors are great when one of the kids isn't feeling well and they can diagnose an ear infection or an icky tummy bug, but they haven't been with my child since birth and I don't know if they are necessarily looking for the developmental delay so much as they are the sickness or the cause of the child's distress. Does that make sense?

Another important thing and something that is kind of a blessing, is the sense of urgency my doctor and the nurses indicated in getting him places to find out what the problem was so we can start helping/fixing the problem.
This is all we know at the moment: Gabriel will have an MRI, an EKG test and lots of blood work done on Tuesday starting at 1:00 p.m.
Then, I will head to Spokane with either my parents or my in-laws on Tuesday, May 28th so Gabriel can meet with the pediatric neurologist at 1:00 p.m. on the 29th. From there we should hopefully have more answers and we will start both physical and occupational therapy.  
 
It is a little overwhelming, but I know it is the right thing and I am so glad it is finally being addressed.
 
I am very hopeful that it is something that can be corrected with a change in diet (PKU? Gluten intolerance?) or physical therapy.
I am also hopeful that he will eventually get back on course because we are catching this so early.
 
As I lay in bed last night, my mind racing and racing, I found some comfort in the thought that God wouldn't give me more than I could handle. For some reason, although it feels like a lot, he must have known we could handle this moment in Gabriel's life--or else he wouldn't have given him to us.

So yes, I am very sad right now. I think we all are. We are worried. We are fearful. We are anxious.

But, most importantly, we are hopeful.  
 
I know a lot of family and friends will read this and want to talk to us or contact us and that is so wonderful and we love you and all of the support we have. It is just amazing! I have this blog for you!
But, I would kindly like to ask that you maybe wait until we're back from our appointment in Spokane to get in touch with us. I will try my best to blog in order to keep everyone updated. Keep us in your thoughts, but please understand we may not be ready or able to physically talk to you about it.  Jeff and I are both really emotional about it. Lots of tears have flowed since yesterday. No parent ever wants to admit there's anything wrong with their child, and we really just want to put all our energy and love on our two amazing boys.

2 comments:

The McGregor Clan said...

Sarah, Lil man's got prayers being lifted for him and your whole family from the McGregor's. I know what it's like to have that sinking feeling in your gut. Just hang on and keep being the awesome mama you've always been with whatever happens. Praying for the doctors who will be evaluating him and guidance of what steps to take. Love ya sister.

B said...

Many prayers to you all.