How's Blake???

[Guest guest]

Just wondering and still praying!

Pam

mom to 4

Rebekah, 7, CVID and ??

Four years on IVIG replacement therapy and doing great!!

[Guest guest]

Hi!!!

I am so sorry that I have not been a very good writer as of lately!!

Blake has been keeping me quite the busy mom. Not only adventure wise

but also health wise and with school

We have been also having to adjust to life with a father half way

being available for his family. has had seveeral things come up

that has made us thing of what really is in Blake's best interest

other than him thinking he can be living life as a single man,again

(this after 20 yrs).

Health wise, Blaek has had several hospital stays here in just the

month of Sept. & Oct. The day " walked out " Blake was already

kinda pueny. I had to carry hin to teh Dr. Blood cultures were done

to make sure there was nothing showing in the Broviac that we can

proudly say, we have had this line for 2 yrs. & it served us well. He

also had an awful sinus infection as well as his ear was infected.

The next day, Blake was taken 2 hrs. away to be treated for a Staph

infection in the line & in the bottom of hs left lung & mid right

lung. was no where to be found. We stayed in Col. for 3 days. I

talked them into letting us do all meds at home since we had been

doing IV meds at home since Blake was 3.

Then Blake was inpatient aroud the 15-17th of Sept for a toe that got

cut & since Blake wasited too long to tell us of it(you know 14, young

man can do for himself.......)he had a major infection that needed

treatment. No soone that getting off the meds for this, 's mom

had to have a total knee replacement & we nearly lost her due to the

reaction of the epidural coming out as the moved her from stretcher to

bed. Then to get comfort they mixed 3 different Pain meds & we nearly

lost her(Not too good for Blake he almost lost it mentally ofver

this).

During this time there was no tell-tale signs of . When he did

come to teh house he made comments like, I may be here, but we are not

together. Leave me alone let me sleep. He even raided my home of

cleaning products & food to take care of " business " with his newly

found " friends "

Then October 6th I took noticed of Blake's foot after he hit it on the

coffee table. His toe was 4 times the usual size & turning BLACK!!!! I

really thought he was about to lose the toe. Took him to the Ped. She

popped the hugh blister & water spewed everywhere. It was not

infection??? She cultured, nothing grew out!!! We just kept draining

the water out(she called it a serrous fluid). We were inpatient again

for 3 days!!!

Yesterday we took Blake to his Pediatric Surgeon because the stitch

that was keeping Blake's line in place from the outside had is now

inside!!! It is actually calcifying in there & causing his chest wall

to harden!! Not too pretty right now plus a 14 yr. does have issues

with appearance(having an enlarged breast is not an empressive

sight!!!!) The line also has started to shrink to the inside. For the

first time we heard.......He is out growing the Line!!!!! We were

told it is very unusual for a child to keep a line (Broviac) for this

lentght of time, have only one line infection, & still be able to use

the line with a hugh clot surrounding it!!!! THe line is going to be

changed sometime in th enext couple of weeks. They will take out the

Broviac, replace it fix the scarring on the outside (after he takes

out the calcification around the one in there). The will also repair

the Mic-key button site(still open & drians each time Blake drinks

anything). THey will repair it from the inside out & we should not be

able to tell it was ever present before!!!!

Blake will be inpatient for this . He will spend a few days there to

heal. At first when was told he kept telling us no. He was fine.

Well since Mr. Blake is 14, he IS able to make some decisions on his

own & I beielve in order for him to live as normal a life as he can, I

would let him tell us if he wanted to have it done. He told

, " this time I can do this & you can tell me no, but I want to

look like other kids my age!!! " So, I am about to call the Office &

fine out what the date is that they have set up for us.

I have to get Blake to the Pediatrician tomorrow morning. The Surgeon

wants him on IV Meds. for at leasr one week before surgery. he does

not want to take a chance of any infection showing up immediately

after the surgery!!!!

As for adventures, there is really NEVER a dull moment with a

Hyperactive Teen!!! you name it Blake has or will try it!!!! He is so

full of antics & keeps me thinking. He is not too worried about

& his " call it whatever you may, i call it ADHD rebellion in adult

form!!!)He just has to make sure he can find me at all times & that we

are in check with all he has going on with him. Blake really has

become much more calmer through all of this .

In saying about Blake being calmer, his school grades are GREAT!!! he

made the A-B honor roll for the semester!!! First time since being in

middle school. He is willing to go along with the teacher &

understands taht because of his different needs as far as the

education is concerned, he has to try harder to accomplish better

grades(He is Autistc, Severe ADHD OCD & PDD). Plus his teacher has

come to realize that Blake is a brilliant child & works better moving

around rather thatn being still. He still can not work more than 1-

1/2 hrs. at a time. He is also still on Complete Homebound. Although,

since doing IVIG in th emiddle of the week, & we have a 3 day period

after treatment to get to do free stuff, Blake is at teh school with

the aide if a mentor for that 1-1/2 hr period...Tues, Wed, & thurs

(every 2 weeks).

If you want to read any more about this Great Adventure I have with

Blake, Please visit http://www3.caringbridge.org/sc/blakester & read

more about him. Please also feel free to leave any kind of

encouraging note for him. My child although only 14, was graded at a

4th yr. college reading level & getting stronger each day!!!!this is

part of the Autism, Blakes obbcession is in reading about history,

wars & ancient times!!!! he has a few fun reading times....he just

finished reading a WHOLE novel!!! Earagon.....now he wants the second

book!!!

Plus you all have got to see how much he has grown in just the last 6

months.....105 lbs, 4'6 " to 135 & Counting as well as 5'4 " &

Growing!!!!

Thank you for reminding me to update about this monkey also. Please

pray for Blake & the upcoming surgery as well as the family situation

as changes evolve aound Blake & Myself!!!

Plus I am sorry for taking so long to do this!!!

mom to Blake, 14, My GREATEST Adventure of a lifetime!!!

CVID with complete T-Cell Dysfunction, 20 Grams IVIG every 2 weeks,

SDS, Asperger's Syndrome(Autism) ADHD/OCD/ODD/PDD....heriditary!!!

Sensory Intergration Motor Skills Delayed, Severe Asthma,

GERD....former Mic-Key button user....11 yrs(removed July 2005!!!)

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>

> Just wondering and still praying!

>

> Pam

> mom to 4

> Rebekah, 7, CVID and ??

> Four years on IVIG replacement therapy and doing great!!

>