Babybirds 1/7/03

[Guest guest]

An update of the babies for everyone;

Glynn,

Hi, sorry no email last week, we now have broadband and more reliable

internet access...

AURORA-KALENA

OT/PT

She has been working on sitting and trunk exercises. Although a lot of the

hour is spent trying to get her to not be so upset and crying. She was even

kept on an early schedule for feeding and had a nap but still screamed and

cried till finally 2 burps came out, then she was pampered over by the

thereapists who were all freaked out by her capacity to be heard! There is

video tape footage of the foam seat (sandwhich) that was made for her to sit

in on the floor. She will only need this until she can sit up on her own.

Meanwhile this helps her practice with the tummy muscles, plus she can sit

on the floor with her brother and play! She loves it! Now if a bathseat can

be found that she loves just as much....

Her feeds continue to go well. She is having problems with huge hard poops

though and looks like she has hemroids. So I am adding 2 oz of pear juice to

her schedule 2 times a day. Once in the morning and once at night while she

sleeps.

She is also now on a routine at home to get solids offered orally for

practice 2-3 times a day. She does so good swallowing the food when it is

something thick like smashed bananas and gram crackers.

She is practicing her floor(sitting)exercises and ball exercises once a day

as well.

TEETHING

Kalena is working on cracking through some molars both on the upper right

and upper left! Both top and bottom 2 front teeth are in.

KEANE

OT/PT

He is making leaps and bounds in his abilities. He is working on standing

without leaning on the furniture, transitioning from surface to surface

behind him...(See video). He will need a lot of practice with support before

he is ready to do any creeping along furniture on his own. He also needs a

lot of support and practice at lifting his leg and/or baring weight from leg

to leg to get the idea that he can move his feet to scoot along the

furniture. He also needs support in pulling to stand from side sitting. This

was really encouraged. So this will be the focus of most of at-home practice

the one time a day when the twins can be caught not hungry OR tired AT THE

SAME TIME! Otherwise will work with one while the other is napping. Keane

has been able to take short naps in his crib the last couple of days without

waking and freaking! He usually needs to be held for him to get in a good

solid nap...YIPPEEE!

PKU

His blood levels came back today from Beth at 1.8 (great! they said) with no

changes to diet or formula. He is being offered smaller snacks and is now on

a trial schedule to get in five 7oz bottles. So with smaller snacks of

solids it has been working out pretty well. The babyfood, squash has really

been helping loosen up his stools. He is still working on drinking from a

cup in therapy, but until he gets good enough at it, the therapists think

the bottle is still the best way to go for now since the formula is so

vital.

TEETHING

His second (FRONT) upper tooth broke through the other day, and now his

lower second bottom tooth is showing. He scrinches up his face with a silly

smile and shows you his top teeth by tilting his head back...

BATH

If I already didn't mention this, he is bathing by himself in the

bathtub(not left unattended)!

Dr. appts

Keane needs to be seen by his regular Dr. for dry skin patches on his legs

and arms. He probably has what's common to children with Down syndrome, skin

problems. I hope they can give him some cream to keep it smooth.

Kalena needs to see her Dr. as well for the dry patch around her eye

(probably the same thing).

They both have follow up appointments if February for Ophthalmology. Kalena

will be seen to determine if she needs corrective surgery on her eyes or if

she just needs glasses...

She has a follow up at Endocrine to see if she needs to continue on the

medication! If they take her off she will be medicine free!!

Both of them were voted to be featured in the Down syndrome community

calandar for next year's calendar. This is the national community. A

photographer will be scheduling a time to come photograph them the end of

this month. The photographer also has Down syndrome! The calandars will be

being sold at the Buddy Walk next year. They have also been featured on the

Down syndrome of King County's calendar. They appear in their birthday month

of August. I keep saying they are little celebrities. When I took them to

the Legislative Forum for Disabilities they were the most popular ones

there. There were lots of photos taken by some professional-looking people,

and all the who's-who is the Dept of Disabilities Division was there...all

the heads of the state Representatives...anyway, I just enjoyed watching the

babies get all that attention! I will find out from Jodi (from the parents

group) where the pictures taken are posted on website or where?

I'll send another email update the 17th (Friday ).

Char

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