"I sought the Lord, and he heard me, and delivered me from all my fears."
Psalm 34:4
Yesterday on my way to drop the boys off at my friend Christie's to be babysat while Jeff, Henry and I could go to Children's again for Genetics counseling, I got a call from Melissa who is a dietician that we saw last month about Henry's weight and possible aspirating. Henry had slept all but maybe 4 hours yesterday and hadn't eaten a ton either. She told me that he had only gained 18 grams a day last month, not the normal 20-30. But this was ok for now seeing that he will have to fight his weight for the rest of his life; however if it is significantly less next month we will have to supplement with formula. I do my best to feed my little guy, but how do you make a baby suck when he doesn't want to eat?
Anyway, this conversation put me into sad mode...preparing for more tests next week at Children's at the ENT wing and wondering what they will find. If they find nothing then we prepare for surgery. Which makes my heart skip a beat at the thought... I know it's coming. I will most likely run to the arms of my friends Phil and Jamie the night before, crying and asking them to pray for Henry and for me... I've already had nightmares of the doctor telling me he didn't make it....I shake the idea from my mind...that's not going to happen. God has a purpose for Henry...
So, on our way to see Dr. Hopkin, with ideas in our minds and hearts about Henry and his breathing, being so exhausted from the labor of breathing, maybe that's why he is sleeping so much...but we don't have any answers yet or any way to get them until next week, so we have to put it out of our minds. I tried holding back tears at Christie's because I couldn't figure out why I wanted to cry...and I tried holding back tears once we signed in and sat in the waiting room. Jeff tried to get my mind off it by asking me about The Little Mermaid playing on the screen. We had heard a family saying "Where did he go?" to the lady checking us in and she replied "downstairs to the first floor." The couple frantically replied,"Oh my gosh!! By himself?!!!" So while in the waiting room, a code Adam went off with a complete description of the 26 y/o man in jeans, a red shirt, a gold hat and a beard..." I almost cried just because of that. Luckily, Children's is awesome and always on the ball, and found him in a few minutes. Still, more uneasiness.
It was our turn to go back. Henry got weighed, and instead of weighing 10lbs 1oz like he was on Tuesday he weighed only 9lbs and some-oz. They had weighed him with his diaper on then, but still...how do you lose almost a pound? It was a fresh diaper...I'm confused. But then Henry made us all laugh, he began peeing. And peeing. And peeing! The nurse laughed,"This is a record, Henry!!!" Pee flooded the scale and the table. We cleaned him and dressed him and in the process of measuring his head circumference, the nurse put her arm in the pee...which made us all laugh at her. Tears, forgotten.
It was our turn to go back. Henry got weighed, and instead of weighing 10lbs 1oz like he was on Tuesday he weighed only 9lbs and some-oz. They had weighed him with his diaper on then, but still...how do you lose almost a pound? It was a fresh diaper...I'm confused. But then Henry made us all laugh, he began peeing. And peeing. And peeing! The nurse laughed,"This is a record, Henry!!!" Pee flooded the scale and the table. We cleaned him and dressed him and in the process of measuring his head circumference, the nurse put her arm in the pee...which made us all laugh at her. Tears, forgotten.
Next we met with Stephanie, who is excellent. She is the genetics counselor who went over family history on both our sides. It was funny, when she asked Jeff for ethnicity, he said "Kentucky". Her and I shared a wink while Jeff went on talking about Germany and being Irish... tears that were once coming up from seeing her binder covered with chromosomes were fading as I realized and accepted this new life once again...embraced the hysterical and determined that at least we got to meet new and interesting people!
Stephanie explains that 95% of Down syndrome is the three chromosomes for 21 but sometimes one of those chromosomes can translocate to 14, or 13 or where ever. Which I knew, because I read that in my book from the library . But that kind is rare, only 3% of Down syndrome is that kind. And then there's Mosaic Down syndrome, which is only 1%, where only half of the chromosomes have 47 and the other half have 45. Still Down syndrome, just different math. We most likely would fall into the 95% category so she went to get the results from the hospital. I didn't know they had them! How cool!
Stephanie explains that 95% of Down syndrome is the three chromosomes for 21 but sometimes one of those chromosomes can translocate to 14, or 13 or where ever. Which I knew, because I read that in my book from the library . But that kind is rare, only 3% of Down syndrome is that kind. And then there's Mosaic Down syndrome, which is only 1%, where only half of the chromosomes have 47 and the other half have 45. Still Down syndrome, just different math. We most likely would fall into the 95% category so she went to get the results from the hospital. I didn't know they had them! How cool!
She was gone for awhile then she came back with this.
She said, "Well, it was different than I thought. He has translocation Down syndrome, but his translocated to the other 21 chromosome, which is even more rare. I've never seen that..." Dr. Hopkin had come in at this point and said that he had seen it before because he was an old man and had seen lots of things!
Had Henry been our first child, Jeff and I would have had to have been tested. Because if either Jeff or myself had been born with our mom's and dad's chromosomes stuck together in us, we would have passed that chromosome down to our children. Which means that, say I had it, then my stuck chromosome would have paired with Jeff's chromosome like normal, but because there would be triple the information, every single one of our kids would have Down syndrome. But since he's our third, we know that Charlie and Wesley are normal and so it's not from one of us, it's just a unique thing to Henry.
The event of the Robertsonian chromosome fusing together is called de novo, meaning it is not inherited and it is extremely unlikely to ever happen again....
Henry is a rare breed!
He is the little boy I never knew I wanted...the baby I didn't know I needed!
Our chances of having another child with Down syndrome is 1/100. But that's up to God, not chance.
Had Henry been our first child, Jeff and I would have had to have been tested. Because if either Jeff or myself had been born with our mom's and dad's chromosomes stuck together in us, we would have passed that chromosome down to our children. Which means that, say I had it, then my stuck chromosome would have paired with Jeff's chromosome like normal, but because there would be triple the information, every single one of our kids would have Down syndrome. But since he's our third, we know that Charlie and Wesley are normal and so it's not from one of us, it's just a unique thing to Henry.
The event of the Robertsonian chromosome fusing together is called de novo, meaning it is not inherited and it is extremely unlikely to ever happen again....
Henry is a rare breed!
He is the little boy I never knew I wanted...the baby I didn't know I needed!
Our chances of having another child with Down syndrome is 1/100. But that's up to God, not chance.
This is a folder they gave us yesterday. Expecting an extraordinary life...I am hopeful today. Yesterday's fears have since passed away and today is a new day. Today is a day that I can choose to see Henry's Down syndrome as a beautiful, rare, precious gift that was specially designed for and given to me!
Dr. Hopkin, who is fun-loving and smiley and funny and positive said, "You will have good days and bad days. There will be days when Henry can't do something he's trying and trying so hard to do...and you will realize the loss all over again....and there will be days where you want to tell everyone you meet about the amazing thing he just did! Embrace those days."
I wrote out a list of expectations:
Expect triumph over trial.
Expect victory over victim.
Expect love over loss.
Expect dream over doubt.
Expect fun over fear.
Expect accomplished over accepted.
Expect magnificent over mediocre.
Expect extraordinary over ordinary.
Expect Henry the Great!
This does not mean that we will grimace and groan when Henry doesn't meet our expectations. We know that Down syndrome has it's place...but we also know that we need to put Down syndrome in it's place.
It took me till now to really understand the words "Down syndrome is a part of who he is, it's not who he is." It doesn't define Henry.
Today is a new day that I can view the best of all possible worlds...a day that I can see through happy, rose colored glasses...without any tears...
This is so beautifully written, Kelly! I just re-found your blog... and am so happy I did. You are an amazing woman and mom who Henry is so blessed to have (and you to have him :))
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