Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts

Monday, February 28, 2011

My Average Joe

Right now I'm reading an old report from when Brady was evaluated by Early Intervention in October of 2008. This was the 2nd time we had requested that they come to evaluate Brady's gross motor skills. After all, he was 18 months old and not yet walking. Actually, he was having trouble pulling him self up, something he had done shortly after his 1st birthday.

This is what the therapist concluded after working with Brady and scoring his gross motor skills, "Brady is currently functioning in the 1st percentile and 2.0 standard deviations below the mean when compared to his same-aged peers." In layman terms, 99% of children had better gross motor skills than Brady did at that point. It was not good news.

Now I'm looking at a report completed by a Developmental Specialist at Strong Hospital two months later on Dec 23, 2008. Unsettled at the conclusion of the Early Intervention eval that his delay was probably because he was a triplet born prematurely, we decided to investigate further. After meeting with us and examining Brady, the Developmental Specialist concluded, "Brady has substantial lower extremity weakness, hyper-reflexia, and hypotonia affecting his walking. These findings point to mild spastic diplegia a form of cerebral palsy often seen in ex-premature babies." This was very bad news.

Fast forward 2 years and a few months. We all know what happened in those two years; a cancer diagnosis and the realization that Brady's spinal cord had been encapsulated by an aggressive tumor. Then came a surgery that would relieve the pressure caused by the tumor, removal of part of it, but also leaving Brady's spine at high risk for deformity in years to come. We would find that two rounds of chemotherapy would not change the size of the remaining tumor in Brady's chest. We sought surgery from a hospital in NYC with the surgeon was considered the best of the best in the Neuroblastoma world. Another life threatening surgery would end Brady's cancer treatment. To retell this story is to understand that there was a pretty bleak outlook for Brady to regain much of the motor function hindered by this tumor. With every surgery came risks of paralysis and we never knew just how much damage the entangled tumor did to his spine.

I've never been prouded to announce the results of Brady's most recent tests in gross motor function. Linda, Brady's PT whom he has worked with for almost 2 years, emailed me the results just yesterday. This is what she said, "He scored a 100, a perfect "average Joe" at the 50th percentile!" Can you even believe it? A score of 100 is completely, perfectly, miraculously, wonderfully AVERAGE! Never in my wildest dreams, prayers, and hopes did I think we would ever see Brady go from the 1st percentile to the 50th! Matt and I shed tears of joy knowing that our boy is average!

The purpose of the story is simply...HOPE! No matter where you find yourself today, there is HOPE! God doesn't need the opinion of specialists and doctors to do the impossible! His power isn't bound by test scores, diagnoses, or even tumors! I know of several families facing difficult situations today. One family I have been communicating with is in NYC this very morning and their daughter is having virtually the same surgery that Brady had to remove a NB in their daughter's spine. I know beyond a shadow of a doubt that God wants Brady' story told to bring HOPE to those who need it. Hey--even I need to remind myself of how far we have come to bring HOPE into my hopeless days:)

I hope you will join us in celebrating our "Average Joe!"

Tuesday, March 17, 2009

The Storm Rolls On

The day started off with a bang. The hospital called to tell me that Cara needed a recent physical before they could do the MRI. I knew we were in trouble because she hadn't been to the doctor since October. I called the new pediatrician's office and she was amazingly accommodating. She told me they would fit Cara in at 11:15. So, instead of Matt taking her, I packed her up and took her to the doctor for the physical then on to the hospital for the MRI. Matt wasn't due home from work until 11:15, so he took Allie to the doctor at 1pm.

Cara was scheduled for 1pm...she didn't even go in until 2:30. So the poor thing hadn't eaten since 7pm last night and she missed her nap time. She was VERY good though, charming everyone she could find of course. I got to go with her as they put her under anesthesia and she did fine. She was done at about 3:45. She woke up really grouchy and tried to pull out her IV (that's my girl!) She cried most of the way home, but after a few minutes home she was fine. The radiologist came out, and knowing our situation, she looked at me and told me there was nothing "catastrophic" viewable on the scan. We won't get the details until tomorrow, but I can live with nothing catastrophic until then.

On to Allie...unfortunately today we found she has a heart murmur. The doctor detected what she thinks is a ventricular septal defect, basically a hole in the lining between the lower chambers of the heart. Most of the time these will correct themselves without incident. However, she did want us to see a pediatric cardiology specialist. So, off we go to another specialist next Tuesday. Other than that, she is the picture of health, a real butterball (92% in height & weight). She is the first Williams baby to make the normal growth curve by 4 months...go Allie!

I know you are probably thinking "what next?" Yes, I think that way too...A LOT! It's really easy to get stuck in the "why me" way of thinking, I do it at least 5 times a day!!! I'm trying, trying so very hard, to focus on the hope that I have in my faith. One of my new favorite songs:
"Our Hope Endures" by Natalie Grant

You would think only so much can go wrong
Calamity only strikes once
And you assume this one has suffered her share
Life will be kinder from here
Oh, but sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?

But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged

I just have no doubt that God is right there with us, everyday giving us strength, putting wonderful people in our lives, and brining so many people together in prayer!

Nothing from Sloan today. I'm planning on calling tomorrow to check on progress. Thank you for your prayers today:)