Kaleb Update March

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Hello - I don't know about you, but I feel like this year is flying, it's

going by so quickly! Here it is already March! This is late, but we hope

that everyone had a happy & safe St. 's Day... attached you'll find

" Kaleb O'Townsend " !! Kaleb turned into a wee leprachaun for a bit' and we

were able to catch the moment thanks to one of his brilliant teacher (Kaleb

has three brilliant teachers!! & two awesome therapists) Miss Amy did a

wonderful job w/Kaleb making " Kaleb O'Townsend possible!!

A couple things have changed since the last update the most exciting is

Kaleb's new Rifton !! Thanks to the wonderful talents of his physical

therapist (PT) Miss Lori! It's fire engine red, and has sparkles, it's

great. Kaleb's still trying to " appreciate " it LOL, as of right now he'll

stay in it for 1/2 hour - 30 whole minutes... we're hoping he'll grow to

love it as much as we do! He sure can move in it though (expecially when he

channels his anger!). With the walker it's helping stregthen his legs, as

well as his trunk support, head control and other things too. So he's

having to cordinate his body in order to move, which can be frustrating -

but he's doing a wonderful job! I've tried adding the video, but it takes

forever to upload, so the next time you visit you'll have to remind me to

show you the video of Kaleb in his walker... it's absolutely amazing!!

Praise God!!

This month's themes have been [of course] St. 's day along with the

clovers and the color for the month is green. Kaleb's Preprimary themes

have been " Here We Go! " - transportation & things that go... we've been

having alot of fun making different clovers, utilizing the color green and

transportation projects. Next month " April Showers Bring May Flowers " , and

we'll be learning about the color yellow. His preprimary theme: Animals on

Parade, animal sounds, pets, farm & zoo too.

Every month we have been decorating Kaleb's wall next to his crib [which

happens to be the back of Grandma Ida & Grandpa Jim's Chimeny]. This month

we've decorated it " May comes in like a lion & goes out like a lamb " and it

lookes like a clover patch has exploded in Kaleb's room/Grandma Ida's &

Grandpa Jim's Living Room. So I'll be anxious for the change coming soon @

the end of the month... lol

At Kaleb's last pulmonary visit (lungs) the doc said Kaleb could go back on

room air during the day. As long as he's tolerating it well. We'll

continue to check him through out the day to make sure he's breathing

adiquately and getting enough oxygen. At this visit he weighed in at 34

pounds! He gained a little bit since the last weigh in about two weeks ago -

he's a growin' boy... and his length was 34 too. Dr. Quigley Kaleb's

pulmonologist was pleased with Kaleb, a much better visit than the last one

when she had a more somber tone.

Kaleb has also had a neurology appointment... we're catching up here... lol

his neurologist (brain) doctor (Dr. Comi) seems to be an intelligent doctor,

but Kaleb's not an easy patient. I had discussed w/her as well her lack in

communication skills (LOL) she appologized and agreed to call me every

Monday. She did comment that she wanted to work closely w/me to help Kaleb

which was a perfectly worded statement!

Sometimes Kaleb's seizures hurt and upset him [which is very frustrating for

us as well], we (Charley, Kaleb's day nurse was in attendance) discussed

w/Dr. Comi the possibility of something to help Kaleb. He had once been on

Valium, but a year ago this past December we had taken Kaleb to the E.R. for

his seizures... and there @ s Hopkin's they didn't want us using Valium

w/Kaleb because in those circumstatnces this is a drug they use to break the

seizures... so that's when they took Kaleb off of the valium.

In talking w/Dr. Comi about Kaleb's issues she said she could put him back

on it, and that's when she said that she'd work closely w/us. She also

decided to take him off one of his two seizure medications. So we're still

working w/the meds; she also explained a bit' more about the diatery (I

don't know if this is spelled correctly: Kedogenic. It always puzzled me

that she would suggest this being that Kaleb is only on formula. But she

assured us that it was very simple because they have it in a formula base...

great! Now the only problem w/the diet is that when we tried changing his

formula before is when he got so sick (excessive diahrea); he's on the same

formula he's always been on. So we would have to work closely w/his GI

doctor's and nutritionist as well.

One of Kaleb's nurses [Kaleb's main night nurse: ] brought to my

attention that one of Kaleb's medications that he's been on forever could

actually aggrivate his seizure conditions. So I've been trying to talk

w/his doctors to see if it would be beneficial to take Kaleb off of this

medication, and to see if there is another medication that could replace the

one (it's for his digestive); so we don't want him to get messed up there!!

He's making great progress with movement of other kinds LOL! He's

continueing to move his arms more and more (little by little) [we'll take

what we get!!] He continues to love his time in his Acti-tunnel which lets

him explore independently. He continues to be a great kicker too!! His

right leg continues to be the stiffer one & the left he moves much more...

as well his right arm is the better of the two; the left arm continues to

show signs of damage.

We continue to promote Kaleb to use his eyes, he's doing well making

decissions and looking at what he wants. And he'll let you know when he

dosen't appreciate the choices you give him to pick from LOL.

We continue to pray and ask God to help Kaleb, and us; for knowledge,

guidance and patience. Thank you for your continual prayers, we appreciate

them as we know Kaleb does too!!

Thank God!! Spring is on her way... although they're calling for snow

Tuesday!! Yikes! Just when our backs were starting to feel better LOL

We had a week of nice weather, where it reached 80 one day - so Kaleb

enjoyed going outside... we even took his walker on the back porch so he

could cruise around outside.

We hope that you enjoy the pictures attached of Kaleb... take care & God

bless.

Love through Christ --

- Kristy

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