Our visit with Joey's new doctor went very good. I heard a lot of things that I already knew and some new things. He answered each and every question I had to ask. A couple things I guess I really wasn't expecting to hear and didn't want to hear.
He drew Joey's blood for his thyroid & CBC tests, and he also had enough left over to send out for a chromosomal analysis. I had the prenatal diagnosis of trisomy 21 but after Joey was born I refused to let them draw blood again for another one to check for MDS. Apparently it doesn't always show up in prenatal testing. He said that there was a small chance that Joey might have mosiac DS, but with way Trisomy 21 is Trisomy 21 and his diagnosis won't change.
Joey has the cutest pinky fingers. Many children with DS have crooked pinky fingers but I guess I never realized that Joey is missing a complete bone in each of his pinkies until the doctor pointed it out too me. He only has 2 joints instead of the 3 typical people have.
He also told me yesterday that there's a chance that Joey won't walk until he's 2 years old. I just can't believe that, I won't believe that. Each of our children is different and I'm going to hope and pray that Joey walks by 1 1/2, if not sooner. I quit reading the books about babies with Down syndrome soon after Joey was born. Each of our children are so different and the books make each child with Trisomy 21 seem the same exactly the same kind of like a text book.
He did give me wonderful ideas of certain types of shoes to buy for Joey to help him stand better, different techniques to use when eating and drinking that our OT had not told us about, and showed me a massage to use on Joey's high palate if Joey will corporate.
I went to the appointment with a pile of Joey's medical records that he didn't have yet in Joey's chart. He was quite happy with that. I also brought the before pictures when Joey was fitted for his helmet. He was very happy to see the progress Joey's head has made.
Well, I guess that's all that I can think of right now that went on yesterday at the appointment. I think it went good minus him telling me about Joey and the possiblity of Joey not walking until he's 2. He will walk when he's ready to walk!
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12 comments:
I try not to get too caught up in predicted timeframes. The truth is that Joey will do what he can do not only when he is able, but when he is ready.
We could never assign a specific time on such milestones, even though there are charts that indicate what is seen as typical. All children have different strengths and weaknesses.
Miss E walked just a few days after she turned 14 months old, out of no where. We didn't expect it, and there she was walking. Now, if only we could make such gains in speech and communication.
I'm glad the appointment went well.
Since I've been coming here it was easy to realize that your son is the light of your lives and this being I think you will always help him strive to do his very best whenever and whatever he might be doing! Just watching those videos you have posted it is quite easy to see how smart your little guy is.
I'm surprized the doc told you that; but then, I should know by now not to be surprized by what docs say. It isn't helpful, and that information, in the hands of the wrong parent, might make them less inclined to encourage and support development, whenever it happens.
You did right to question it in your own mind. It's our job as parents to let our kids show us what they are capable of.
Glad the rest of the appointment went well!
What's the difference between mosiac and regular DS?? I guess I can google it. I'm glad the appointment went to well. I also know of people who were told that their children with cerebal palsy would never walk, and they worked and worked, and they do walk. You're right, each child is different, and if you work with him regularly, he will walk sooner. I'm glad his head is getting better with the helmet!
I'm glad it went well and you got answers!
One thing Jack has taught me is that he'll do something when he's good and ready...and so will Joey. It's exciting to reach milestones, but once they're reached...that's it! Just enjoy where he is at the moment...
I can't believe he's about to get his helmet off! That seemed to go by quickly!
:)
Our culture is strangely competitive when it comes to when children will do what. My son, who doesn't have DS, did not walk until 14 mos. My mother-in-law warned that it might be late because my husband didn't walk until he was 17 mos.! A lot of kids are unsteady when they start walking. My son was late walking, but surefooted. Some things that children do, they do when they are simply ready to do them and little we do can change that. I guess that's the way it's just supposed to be.
We just frustrate ourselves and our little ones trying to get to milestones. Don't worry about things like that. If he walks when he's 1.5, great. If he walks when he's 2, good for him. I think we look at these things as accomplishments, when they are simply nature taking its course. I can remember feeling embarrassed sometimes because my son wasn't walking AND he's tall for his age and very articulate. I got over it. Now I refuse to compare him to other children like that. It's bad for OUR self-esteem!
Enjoy and marvel every stage. Even the seemingly long ones go by so quickly. He is beautiful.
I'm glad your appointment was productive to some extent.
I am glad that some of the visit was good! I also quit reading the books very soon after V was born. In fact I had a hard time reading them at all, all I kept thinking was, yeah that was that person, but I have Vincent.
Sometimes it is hard to hear that Vicnent will take longer to do this or to do that, and it makes me mad how some doctors feel the urge to tell me. At the same time, I realize that they are not doing it because they are mean and evil spirited, just trying to prepare us for something that may happen. I am sure Joey will be walking, just when he is ready to. In the meantime, keep making those little cute videos of the star!
By the way, that is weird that they needed another blood sample. We only made one for Vincent to determinde the T21, and that was also used to find the type (Translocation 21,21).
I think it is great that he could offer you some very practical advice for eating/drinking etc. We have also had hard news to hear from Dr's, but Sheena is months ahead in her expected recovery period from her Infantile Spasms. They said it would 15 months before she rolled, and she rolled at 11.5 months. They can only use their experience.
Jessica, I was researching Mosiac DS and I came across this story, I know you research everynight, so may have read this before, but I thought it was nice. It's gonna make a real long comment:)
copyright 1987, by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Glad to hear you had an overall good visit with the doctor.
It's interesting that they couldn't tell from the amnio if he had mosaicism and wanted to draw blood after he was born. From what I understand, of the things I've read, is that sometimes mosaic Ds can be missed in an amnio because none of those cells tested had any of the samples with the extra chromosome. So you would find out at birth, when you thought all along the baby didn't have Ds at all. Then they find out afterwards because only some of the cells contained the extra chromosome. But since you knew ahead of time it seems that they should have been able to say yes all his cells had the extra 21st, or not. I don't know - all that stuff is still so confusing to me!
What a beautiful little boy...and believe me, out of my MOMs group,almost all of our kids walked before they were two...don't let the medical community talk you into something that they can't determine. Only Joey knows...
Suzanne
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