Do you know what that is? Nystagmus <- the link doesn't tell you a whole lot does it? :)
I didn't either, till I was told the word during an evaluation we went to for a new "school" mommy and me class for kids like William.
It started (or I noticed it Yesterday, and today Courtney noticed it too.) Told Rob about it and he said, "Oh yeah, I've seen that."
It looks rather freaky, and almost like it could be seizure like, but it doesn't look like a seizure at all. His eye *shakes* as he tries to focus on an object.
Paged the neurologist after I was given the "word" for it, the on-call neurologist called back and said we likely need to be seen since it's new, but that it's likely a result of his injury, and it can be caused by medication, but not any that he is on, so we don't need to do anything right away, but he will let our doctor know and they will call us to setup an appointment to take a look.
All in all you had one freaking out mother on your hand, so I called my be all end all medical reference, ok the local radiologist in the family ;) (Love you Jason! **Really I do**) He was nice explaining to me how some adults don't even realize they have this, and that it's just evidince of his injury show up now that his eyes are beginning to work, and their may be other things like this in the first few years as we really see the brain starting to work. He didn't know how it specifically affected a pediatric case, but it was really nice to have his reassurance that my kids at least not going to be blind, and that this could be completely normal for William.
Micah was crying in the other room and for what ever reason I couldn't get to him right away, I think I was feeding William. So Tommy runs in there saying "Micah Crying!" and I have to follow to make sure he doesn't hurt him, well I find Tommy patting Micah's Tummy and singing Twinkle Twinkle Little Star!
Now that I'm back at work I've been especially busy even more now. But I'm telling you I couldn't do it all without my wonderful Babysitter Courtney, she watches not only my 3 kiddos, but has two of her own with her too. So she has kids 3, 2, 1 and 2 6 month olds. She's wonderful! And she makes it possible for me to go to work come home and in 5 minutes load everybody up in the car and head out to therapy! She has everybody dressed, fed, and in clean diapers bag packed and ready to go!
Look ma all by myself! Micah sat today for the first time all by himself! He went from on his tummy to sitting all by himself! It was when we were at the balloon festival and sitting on a blanket, all of the sudden I look over and Micah is in a full sit!
William just started in the bumpo yesterday, and today he even did better!! Later tonight he even sat unsupported for several seconds!!! (Right by me of course
My Bad I posted this video, and forgot to THANK the wonderful sitter who is watching and carring for with great love 5 kiddos, and she does a GREAT JOB!!! She recorded this video for us! THANK YOU COURTNEY!!!
We've been working on our new routine around here. I've started back at work, and the kids are getting used to the new/old sitter watching them. Courtney watched Tommy when he was 3-9 months old, and she's coming to our house and watching all the kids (she brings her 2 with her) and does a great job with everybody, and Tommy has a play mate. Also Tommy has started talking a lot more. This week will be our first week on our new regular schedule as our therapy settles into a more routine regular time. Also we will have a new PT therapist this week, as the one we did the evaluation with isn't available at the time we needed, so our Therapist name will be Lydia B. Micah is really getting up on all 4s all the time now and inching forward. I expect him at any time to crawl all the way across the room.
It's a good thing I rented the hospital grade pump, was in the car pumping today and only got 1 oz, then when we got to our destination I pumped for 12 min after 12 on 12 off and 12 on in the car, and got 8 oz with the hospital grade pump, I really felt like I was struggling to keep up with his demand all day!
(all about William again), and this will be really quick as I'm tired:
1. William's eye is all better! 2. William's weight is right on track (we do have to write down what he eats so we offer that last feeding if he needs it). 3. She's working on the referral we asked her for to Scottish rite!!! 4. She gave us the prescription we needed for a breastpump (we had to rent a hopsital grade to maintain proper supply).
Other stuff: 5. PTs say he looks better 6. We've gone down a little on his med dose 7. My mom's been great help and great company 8. I started work and the sitters and kids did great for the first week 9. Micah is up on all 4s going backwards 10. Had a great labor day with the family. 11. ECI PT we got is GREAT she really explains things well, and can come every week!!! 12. It was great to see my Dad over the long weekend.
I think that's all ...I've got some pictures of bath time and this past weekend and plan to download those from the camera soon so keep checking back.
When I was young, I'd often say, I'd like to be a mom someday While playing with my baby doll, I thought that job's not hard at all
I'd have a baby, maybe two, a girl in pink...a boy in blue Well I grew up and sure enough, I'm now a mom and gosh it's tough
The baby that was sent to me, was born with disabilities At first I'm frightened through and through, there's much to learn to care for you
This wasn't in my plans at all, when I was young and played with dolls Your mind and body were so weak, you might not ever walk or speak
So much special care required, I'm often scared and often tired As months and years go slowly by, I smile a lot but sometimes cry
To watch you grow and not complain, though you endure your share of pain Oh, how I'd hold you and I'd pray, that you'd be healed and whole someday
But I knew that was not to be, not physically or mentally And so I taught you best I could, your progress wasn't very good
But then one day I realized, as I gazed into your loving eyes That I had learned so much from you, determination...courage too
A love so unconditional, it floods my soul and always will I'm proud to say I gave you birth, for you're an angel here on earth.
God Choose a mother for a "Special" child
Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But she has patience?" asked the angel.
"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
And what about her Patron saint? asked the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
My 3 Boys!!!
About my blog
This blog is about me and my family.
Wife to Robert Conrad, and Mommy to Tommy, William, Micah and our latest edition Sydney! Tommy is my bouncing/skipping/swimming/reading 5 year old, loving life and having fun, William (3) is our happy smiling laughing boy loving life and his brothers, William has CP, Micah (3) is our happy go lucky boy, walking/running/swimming/tooth brushing easy going tender hearted boy, Micah has a Congenital heart defect Atrial Septal Defect ASD. Sydney our latest addition adds a girl to our crew of boys.
Two roads diverged in a wood, and I-- I took the one less traveled by, And that has made all the difference
Wife to Robert Conrad, and Mommy to Tommy, William and Micah! Tommy is my bouncing/skipping/swimming/reading 3 year old, loving life and having fun, William is our happy smiling laughing boy loving life and his brothers, William has CP from a birth injury, Micah is our happy go lucky boy, walking/running/swimming/tooth brushing easy going tender hearted boy, Micah has a Congenital heart defect Atrial Septal Defect ASD.