This week we therapy was canceled Tuesday and Wednesday due to in climate weather. Then we had Physical Therapy on Thursday. Tommy gets to swing on the swing and jump on the trampoline at Therapy. Then we go on a walk around the building while William gets some CST. During our walk Tommy rode 2 alligators (elevators), and did some crawling down the hall with Micah chasing him.
William worked on his rolling, did some spinning, and some standing. He's making slow and steady improvements, and he tries so hard. We're trying to determine the perfect amount of therapy for William in this coming year, where he can make the most improvements while costing us the least amount of money in the process. Deductibles and out of pockets start over when we've just come out of the most expensive medical year ever, but who can put a value on a life so sweet and precious. One that has touched so many already. I just know that God has something special in mind for this little man, all of my little man, but it's so evident with William. So we plod on feeding him as often as we can and holding him at every opportunity, and helping him move his body when he's frustrated because he doesn't just want to lay on the ground and do nothing. He's showing more and more motivation each day that he wants to interact with him surrounding. If we hold him under his arms and help him walk or kick a ball he just lights up with a smile that touches everybody's heart. We go to a gymboree class on fridays and he loves seeing the other babies his age, and playing with them and watching them. We walk in the room and he glows. He tries to mouth the play balls, and roll on to his tummy to go after a toy. He shines when we do the freeze dance, and tries to tap the ground during parachute time when "we hear thunder", and the pitter patter of the rain. He recognized the repition of the class. If anyone want to share this experience with me they are welcome to come to a class with us, I've got two babies after all, and a 2nd set of hands to guide Micah and William through the class always helps. Most of the time Micah sits with the teacher during the class, and he love the interaction and plays peek-a-boo during parachute time.
William and Micah are 317 days old, And William has been eating pumped milk, and just for hecks sake, I decided to see how much milk I've been pumping for him. He takes about 30 oz of milk a day, but I'm guessing I average pump about 40 oz a day more at the beginning and right now I've been just meeting his needs. So that's 40oz * 317 days = 12680oz, using google to convert oz to gallons (type "12680 oz to Gallons" in the search box) I get 99.06 Gallons! WOW!
Btw that's a savings of $2,443.00 at $0.19 an ounce for Neosure formula (1 can makes 85.5 oz at $16.49 a can)
or
Banked Breastmilk at $3 on ounce that would be $38,040 value for what he is actually receiving.
We had our Neurologist check up on this past Wednesday. William showed off all the new stuff he was doing. He on command looked at me with his eyes. He sat for a few seconds. He weighed in at 15lbs 4oz and was a Wopping 29" tall. He grew 3 inches in about month. We talked about his eyes, and he said that's normal for William's condition, and just a matter of lack of muscle control while trying to focus. We talked about his vision, and how if he continues to pull to the right after he's a year then we will need to talk to an eye doctor to see if there's something they can do to help him. Also, we talked about his tight hamstrings, and if the therapists can't stretch them then we may do botox, but that the therapists will know when. He was trilled with his progress. We also talked about his language skills and how he'll communicate in the future. That expressing and talking himself will be hard. He'll understand more than he'll be able to tell us, and that as his mother I will know his gestures better than others. He also asked what Micah was doing in his communication skills, so he could compare them. He was trilled William will say hi, and that he's sitting, and trying to roll, and holding his head up.
We go to Gymboree play gym with the babies, during Tommy's nap.
Micah like's crawling on all the obsticals, hiding in tunnels and tents.
William loves the freeze dance, bouncing on any gym piece, and looking through tunnels really helps his eyes. And during our class I get one more hour of working with William and playing with him, kind of like an inexpensive therapy time for William, since he has to spend so much time just sitting in his seat looking around the room at home.
And Tommy can go to the open Gyms with either Just Mommy or with his brothers too. Tommy really loves it when he gets Tommy time (Just Mommy and Tommy) at Gymboree. He asks about it, and if it's been a while since we've been he'll ask to go.
Friday Morning we went to open gym, and at the end they do Gymbo clown stamps on feet, hands, and tummys. The big kids were all lined up for stamps and William was sitting with me a row behind the big kids. All the big kids got their stamps, and William was squirming like he wanted something. I told the teacher I think William wants a stamp, and she asked him and he made this "Ahhh!" sound like yes I do want a stamp, and got this big grin like he thought we'd never ask. So he got a Gymbo stamp on his hand and he smiled so proudly. He also smiled so proudly every time I repeated the story to friends at play group, and to Daddy and to Grandma. This is also one of the first time's I've seen him "ahead" of Micah, Micah was there, and was more interested in climbing and being active on the toys than in the Gymbo stamps, so he was paying no attention to everybody getting stamps.
My hubby's birthday is Tuesday the 13th...Happy Birthday Dear, to the man that makes it all work, that supports me in everything. I Love you!
My wonderful hubby threw me a surprise party for my birthday which is Wednesday. It was so nice to have friends and family there just for me. I was so touched! Thank you everybody who came, decorated, or helped in any way.
I also had to mention that my In-Law's got us a new car for our birthdays, an older Ford Expedition! I'm so excited to have a car that our whole family fits in! I'll have to take a picture of inside and out and post it here so everyone can see!
Mother of a "Special" Child
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."
"Forrest, Marjotie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
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."
