Today My mom watched the Tommy (Thank you mom), so I could take William to therapy. It went well, at least we didn't cry the whole time. We learned some new mouth exercises, stroking the cheeks, both inside and out, and stroking the chin. CST Therapy went well, he was spasming to the left and she showed me how to rub the muscles when is spasming to release the spasm.
He was stiffer this evening, but I'm not sure it was from wet diaper, hunger, or spitting out part of the valium at the 4pm dose.
After therapy and chiropractic, we took my mom to the airport. Tommy was sad to leave Grandma at the airport, so we called her on the way home and he was feeling better about that. I think on things like people leaving he's not realizing they are leaving till right when/after they do. This has happened a few times now. We call them, he says bye and all is good.
This photo was taken the 27th of December 1947 in Savanna, GA.
Bride: Sydney Ellis Shipley
Groom: William Jason Shipley
Bridesmaids: Emily Ellis Groover, Frances Ellis Lewis (Sisters of the bride)
Groomsmen: Charles Groover, Best friend of the Groom, and Gilbert Bunny Lewis also a good friend of the Groom.
Flower Girl (Age about 4): Beth Groover daughter of Charles and Emily.
William's much looser, I've been looking for my USB key to download pictures I took for examples, but I can't find it right now, so no pictures.
8 hrs after William's first dose of medicine, he was completely tight again (I took pictures so we can see), so i called the doctor since he had said to start at .5 ml once a day, for a couple of weeks at first. The on call doctor called back and we talked about it and he said to do .5 ml now since he was tight again and then try to do it either every 8 hrs or twice a day. So Saturday we did 7am and 7pm after the day before he had 2pm and 9pm, Rob and I decided he was still to tight Saturday, so we will do .5 ml at 7am, 3pm, and 11pm on Sunday. He's defiantly been much more comfortable.
We went to the neurologist appointment, and he began with "We usually don't give children this young medication, we usually try therapy first." He asked me to tell him what's been going on and why I brought him back in early.
I told him he has much higher tone that last few weeks. The peditrician agreed that he's in pain and uncomfortable, and so did his therapist. We are moving him to twice a week therapy for OT, and also adding once a week PT. He hardly naps (only 30 min cat naps at a time because of the pain), wakes up grumpy. He cries alot. Struggles with his bottles every day. He's barely maintaining his growth curve, and the peditrician and therapist thought some medication would help him gain weight. He's always uncomfortable, he has trouble eating and gets lots of bubbles, had trouble burping. He arches at times and it looks like he will touch his toes to his head. He sleeps at night pretty well, because of the no sleep during the day. We hardly see any smiles, when he tries to hold the bottle he ends up pushing it away, and same thing with playing with toys. He watched me feed him a bottle which he did pretty good about.
After he finished and he woke up a bit, he examined him, and after he picked him up with his arms he still held his arms by his chest as he was supporting all his weight. After one look he said I think we do need some medication. He also check some reflexes. And then told me about the medication, it will make him sleepy, but that effect seems to wear off after time, but we don't want him sleeping too much, we will start with a low dose, but will up it over time as needed by his tone, there's no one correct dose for everyone, it's whatever corrects the problem without too many side effects. We will start out with a dose of .5 ml once a day and then increase as needed. The prescription will be for 1 ml 3 x a day, but we don't want to give that much right away.
We took the prescription to the pharmacy and they had to order the medication in a liquid form as they usually don't carry it in liquid form. The medication is
Diazepam ie valium. We should have it tomorrow.
Many of my friends ask how I am doing: I was both relieved that we could get the medication because I knew he needed it and I don't want him to be in pain anymore, and that it would help, but at the same time I wanted to cry because my perfect baby needed medication to make his life comfortable.
We got an appointment with the neurologist for 11am tomorrow! I'm so excited I could cry!
William:
7/22/2008
10lbs 9.5 oz 0.18 %
23in 0.78%
HC: 15.5 in 1%
We need to get his as much therapy as we can, (we discussed today also getting therapy CST 2 times a week now), and we will also be getting PT through ECI, and maybe OT also. Also, we well keep feeding him bottles and talk about feeding tube again if he can't do solids (after 6 months) or falls off the growth charts, right now he's holding parallel below. His muscle tone is worse and she agreed, and that we need to see the neurologist and get on a medicine for this as this may also help him gain weight and not use so many calories holding muscles so stiff. I've already put a call in the the neurologist nurse to get in, and she called back while I was at this appointment. So I will call again in the am.
Micah:
7/22/2008
15lbs 12.5oz 85%
25.5in 84%
HC: 16.5 in 69%
Micah has a slight cold today and he's doing fine talking using his tongue, saying 'Hi' and 'Mama', just needs to rest and get better.
I just started reading the book "How to talk to kids will listen and how to listen so kids will talk" (and read the first 3 chapters) and starting trying to use my new skills, and WOW my day was so much less stressful!
Have you read this book?
Share your favorite experiences?
I really like "toys are not for throwing", "people aren't for hitting" (explaining the problem) skill, because as a two year old it's hard to know that so many things he doesn't realize how things are suppose to work or why, and we don't realize that as adults.
Of course at bed time we were talking and I forget exactly how it came up, but hitting was brought up I think because he remembered a time he hit Micah today, and I said something about people aren't for hitting, and he translated it into Tommy getting a spanking, and I told him again people aren't for hitting.
So do you know what happens when your husband feeds a 2 year old 2 lbs of blueberries right before bed?
I do, and it's not fun. Carpet cleaners need to come today, and I've already called them.
Micah was very wimpy and tired all day long. His eyes were even puffy and crusty. He also had a nasty cough. He seemed to feel better by the end of the day.
Tommy seems much better, I'm feeling better too, and William's still not sick!
Rob feels like he's getting sick, Tommy's still congested, Micah is congested, and I'm a little achy and congested.
I was too busy worrying about William to post. William seems to have been stiffer this whole past week. We weren't sure why. We had therapy on Tuesday, and we saw Sally Fryer, the owner of the clinic for our CST and Megan for speech. Our speech therapy we spent the whole time arching and resisting the feeding, but she did give us a tip to try to keep the chin down and not hyper extended if we could to keep the air to a minimum. So that has helped some, but generally we've had alot of arching and stiffness. So at our CST session she mintioned he had a bit of
toticollis and also asked what other therapy we are getting which I said none because ECI couldn't duplicate service, she said that she's a PT and that he needs PT (physical therapy) and OT (therapy) bad. She gave me a her card, and wrote on it "HE NEEDS PT" for me to give to ECI when they came on Wednesday.
ECI Came on Wednesday and she observed that he was much worser (is that a word) too. She took the card, and said something about getting someone to teach infant massage out, and also getting the PT (same people) to come out and evaluate him.
Then Friday evening I started to feel all achy, and stiff, and I was thinking if william felt half as bad this week as I did, then maybe that would explain all the stiffness.
This Saturday and Sunday I've got the LLL Conference, I've been excited to hear
Dr Jack Newman speak, and tomorrow is
Thomas Hale.
William and Micah are now 4 months old! I can't believe how the time has flown by. Love you guys more than words can ever say!
Micah is rolling over and sleeping on his tummy, and sometimes in a half side lying position that just looks so relaxed, and William is growing, and it looks like the yeast is almost gone! He's giving us little smiles and an occasional coo, Micah is also talking up a storm and can say Hi and several other oohs and ahhs.
Everybody was rescanned today at the chiro, here's Williams scan, but everybody (Micah and Tommy) had improved, (except me, but I walked up there too, and that could have thrown it off.), If you remember from
last time this is much better! He was read at the top and bottom last time.
Also, William had acupuncture for the burping problem, and that helped it some, and he at and burped much better this evening since our appointment this morning.
We spent the 4th of July celebrating Rob's dad's retirement from the steel factory after 33 years. Congrats to Papa!
William's been having lots of trouble with burps. He gets lots of air when he's sucking on the bottle, and this causes him great discomfort, and also causes him to loose some food when he burps it up. It's not reflux because you can almost always hear the burp that brought it up. Also, the pain from the burps causes trouble with him eating more food.
Also, William's been noticing other around him more, he has some pleasent looks that almost look like smiles, and his legs and arms seem a little looser.
We're still treating the yeast, and symptoms seem to be improving, SLOWLY. The white on William's tongue is much smaller, Micah still has the diaper rash, but it is showing signs of improvement. My nipples are much better and don't have the pain and cracking and bleeding they did earlier from the yeast. Also, William's pain from the thrush seems to be much better, and I haven't had to give him ibuprophen as much, and his limbs have been staying loose without the ibuprophen. Since we're still not symptom free we still need to stay on the medicine 10+ days longer.
He couldn't quite squeeze under the door to escape bedtime. He has been asleep for over an hour in this position.
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."
