Kaleb Update

[Guest guest]

Kristy, we were also told that would never get her trach out. We

wouldnt give up. She also has neurological issues. She does not swallow well,

aspirates some secretions and has some obstructive apena b/c of the tongue

falling back., We sought out several different ENT's over the years and

finally

our ENT at NYU beleived in her and the trach came out 2 years agon this June

10th! was 8. So do not give up. We wore the passy muir vavle for 3

years, then we started cappin gher, started with 1 mn and worked our way up

to almost all day.

We are 2 years trach free. The only bad side is her nose closed again, so

we need to get htat open since their is no longer a trach.

Keep trying, dont loose the faith

Cathie, mom to erika

[Guest guest]

Kristy,

this all sounds like so much fun and your family has waited a while for this

kind of day. I am so glad you shared this with us.

pam

[Guest guest]

youll have to get them to me on yahoo well keep trying love you talk soon

>

> Kaleb has had a very eventful couple of days, he had a fabulous time at

> the

> land Zoo as you'll see and he had a good Doctor's appointment. We've

> spending more time in his pool, and got to have a lot of company for a

> cookout

> we had, which he absolutely soaked in all the attention

> Friday, July 1st Kaleb had an appointment with his GI doctor, Dr. Derusso

> at

> s Hopkins Hospital, his nutritionist Hempsey attended as

> well.

> I've always believe with the bad will come the good ... and this was

> answered. We might be facing some " challenges " with Kaleb's trach issues,

> but at

> least we get to take him off longer for his feeds! As it was before Kaleb

> was

> on a rate of 62cc's and hour for 20 hours a day, which meant he could be

> off

> for four hours a day. So his nutritionist increased his rate to 66cc's and

> hour, and for 18 hours a day, which means Kaleb can be off for a total of

> 6

> hours now!! Makes it much more convenient for " trips " ... like the zoo!

> Also

> Praise God - Kaleb had to get some blood drawn; it was a miracle that the

> same

> lady that got his blood on the first stick last time was the same person

> drawing his blood this time! And she did an amazing job. Before, it was

> tragic

> when Kaleb had to get blood drawn; they would always had to stick him a

> couple times, and he would cry and complain (he had every right to). But

> Praise

> GOD!!! Things are getting better ... might be " little " things, but we'll

> take

> it and thank the good Lord for them too!!!

> So the blood results came back today, and they have " DC'ed " (discontinued)

> the Iron supplement drops Kaleb's been on since birth, as well as his

> Simethicone drops!!! That's two medications that he does not have to get

> anymore!!

> Thank God... The simethicone (gas relief) is a PRN - as needed. We're so

> extremely thrilled!! Everyone should say an extra " thank you " when praying

> ...

> and keep those prayers going, we're not done yet (well, we're never done

> " praying " )... So overall the doctor's appointment went very well

> Saturday, July 2nd , Kaleb, (my sister), and Arden (my

> niece)

> we all went to The land Zoo in Baltimore. It was an adventure, we all

> climbed into our parents Yukon and headed towards Baltimore. You'd think

> we

> were a bunch of " country " folk ... we got a little turned around getting

> there, but we got there thanks to 's skillful driving And

> thank you

> to Kaleb's Grandma Beth for getting the membership to the Zoo for our

> family,

> we had a lot of fun and are looking forward to going back again. We didn't

> get through everything, but we did have a lot of fun. And thank you to Gee

> Gee for watching little Aryn so Steph & Arden could go with us

> Sunday, Kaleb and I hung out in the pool and relaxed all day - it was a

> well

> deserved R & R... Monday, for the 4th; we had some family and friends over

> for

> a little cookout get-together. Thank you again for everyone that came, we

> enjoyed having you Kaleb loved all the extra attention! Steph, Arden,

> Kaleb and I all got in the pool shortly before everyone started to arrive.

> We

> had some good times, and it was a beautiful day!! Thank the Lord for our

> country, good friends and supportive family We are so truly blessed

> So here's the part you'all really want (not necessarily my rambling on...)

> LOL - Enjoy

>

>

>

>

> Kristy, Kaleb & snapping a Kodak moment

> Kaleb was not happy

>

>

> The Polar Bear exhibit was awesome, Kaleb enjoyed it too!!

>

> Kaleb chillin' out by the Giraffe's

>

> & Kaleb playing - Taking a break...

>

> Who's the bigger Kid?

>

>

>

>

>

>

>

[Guest guest]

pam you know how how we say copy past you reckon if she copy paste the pics

would it work just wondering

>

> Kristy,

> this all sounds like so much fun and your family has waited a while for

> this kind of day. I am so glad you shared this with us.

>

> pam

>

>

>

>

>

>

[Guest guest]

oh, Ellen!!

I am the last person to ask about anything computer related!! haha. I am barely

able to deal with email!!!

BUT....I am sure someone will chime in here with the right help for us!!

xo

pam

[Guest guest]

Lots of good news!! How nice that Kaleb has 2 more hours of

" independence " announced just in time for Independence Day! I remember

the days of continuous feeds and it was no fun -- and Aubrie was just an

infant then. I know you'll be so relieved to have those extra hours.

And fewer meds! May the joys just keep coming...

Michele W

Aubrie's mom

>

[Guest guest]

Congratulations to Kaleb!!! What wonderful news! I've been AWAY but i'm back

now and it's nice to have the first email i read be such a happy one!

Cole

[Guest guest]

I am so excited to tell you - Kaleb finally go his wheelchair!! I'll

include pictures, don't worry... we've been super busy... although with these

hot

days, we try to stay in the air conditioned vacilities... this past Monday,

Kaleb had a trip to the new Super Wal*Mart and baught new shoes to go with his

DAFO's (leg braces). He's getting so big, and now that he's in his

wheelchair he even looks bigger! Tuesday was Kaleb's first transitional

meeting

(going from Infants & toddlers, into the public school system); a huge

development! He'll be starting school this year, just half-day - but still...

can you

believe it?

Previous appointments included Pulmonary, GI and Genetics... all went well,

and now we're pretty much to the point where they are mainly " follow up "

appointments. Kaleb's nutritionist did determine to discontinue two of Kaleb's

medicines (his iron drops and simethicone, for gas). It's very exciting and

seems weird not to be giving him as much medicine, but also a great relief!

Praise God that things are going so well, thank you for all the prayers...

There have been so many developments in obtaining help for Kaleb. There is

someone that we have been coordinating with through The Abilities Network,

whom is working with us to apply for grants and our last phone conversation

sounded so positive and hopeful... Now if I can just get through the paper work

she sent me to get it back to her - LOL

There is an organization called VME (I can't recall exactly what the letters

are for) But mainly they are egineers that work together to modify equipment

for special needs or handicapped individuals. They have been working with

us on some idea's for Kaleb, including an adaptive shower chair for when we

get into the new house.

Speaking of moving, it looks like we'll be moving later than what we

thought? It'll probably be sometime in the fall now.

I just wanted to share some good news - Take care & enjoy the pic's!!

Love,

Kristy

Kaleb playing in his bouncer - YEAH!!

Trying to tolerate the bouncer

Kaleb holding mid-line position with his hands!!! Yeah!

Passed out in Grandpa Jim's chair...

Kaleb in his wheelchair!!!

This is his first time in it... and he's tolerating so well

Kaleb LOVES his new wheels...

" Have Wheels Will Travel "