Re: Happy New Year and update

[Guest guest]

Jodi and Steph,

Boston's Children's Hospital has a great Musuem of Science gift shop

which we visit a least once a day with . We usually tell her she has

been very brave about being in the hospital and can pick out an inexpensive

item. We also let her know that it is OK to cry and scream. Getting an IV is

scary and hurts. Getting your fingers pricked so many times that the nurse

doesn't want to do it any more because her fingers are beginng to bruise. Its

OK not to WANT to have these things done. Being brave doesn't mean not crying

it means being scared and afraid and doing it anyway.

We like to get her gifts when she is in the hospital, we must also help

her learn that this is her life, its not fun and this part of it down right

rots, but she has to do it to help get healthy. Its a difficult balance and

we more often than not lean towards showering her with gifts(Grandparents,

aunts and uncles help with this too).

Jodi, also know that I konw your prayers and thoughts have been with us

as our prayers have been with you and yours even though I have not contacted

you directly.

That goes for everybody on the list. I have not posted much but have been

reading e mails every couple days and you all have been very much in my

thoughts and prayers.

To my friends,

Peace and Prayers

Mark dad to 5, G-tube

[Guest guest]

Mark,

Happy and Healthy New Year to you, too. I know things have been tough for

your family and even though I have not written directly to you, my thoughts

and prayers have been with you all the way. Believe me, I know what it is

like to have a child who is in the hospital often.

An idea - something we have done with Max that now helps the frequent IVs

and needles....We promise to take Max to ToysRUs and he gets a small toy for

each needle stick. We have done this for years and it has really helped him

overcome his fear of needles and other medical procedures. I know this

makes Dr. Harbison crazy. She thinks that kids just have to learn that

there are things that need to be done and " bribery " is not appropriate. But

we think that these kids get enough things done to them and if this

so-called bribery thing works and helps them get through it, so be it. Max

now watches as he has an IV put in - and the last one he had was done

without me because I was downstairs doing the paperwork to admit him to the

hospital. Not a tear was shed.

If you ever find out what causes 's ketones, please let me know. We

have never found out with Max and will probably never know. It is something

we have just come to accept and we know the routine to follow when it

happens. I don't know if we have done the right thing by not persuing it,

but that is what we chose. I guess there is so much going on with Max that

if we don't HAVE to find out, we don't.

Again, a happy and healthy to you and and your two beautiful kids.

Too bad this internet does not email margaritas!!!

Jodi

Happy New Year and update

> Hello everybody,

>

> First and formost a happy and blessed new year to everyone.

>

> Second as faciltity manger responsible for snow rewmoval for a church,

I

> cannot write my thoughts on snow without serious censoring.

>

> Although (and her brother) have a cold now she has been healthy

> for a couple of weeks and had a great Christmas. We still have not figured

> out her ketones. She has the Doctors baffled. She was supposed to be

admitted

> Tuesday for addittional testing but that has been postponed pending the

> results from other testing done her last hospital stay.

>

> 's hospital stays are getting tougher on her.. and on us. She

> remembers now and knows what an IV, blood work etc. mean. Her last

hospital

> stay she had to have her IV changed, her G button came out, blood sugar

> testing every four hours a skin biopsy. It was too much on her. It took

three

> nurses and me to hold her to get the IV in. The nurses were great. One in

> particular did a great job talking with , calming her down while

she

> held her head gently. I had to hold back tears has I hugged 's leg

> while she screamed to go home!! Thats the part I hate. Listening her cry

and

> scream(justifiably) and I cannot do a THING for her!!!

>

> Its also harder on her little brother. He misses her and his routine

is

> interupted. It takes him a couple of weeks to get back to normal.

>

> S.: had a skin biopsy done for enzyme testing. I

know

> had one done for genetics. I want them to do the same for

> since they already have a skin sample. Was there a specific name for the

test

> done on ?

>

> To my friends,

> Peace and Prayers

> Mark dad to 5, G-tube

>

>

>

>

[Guest guest]

this brings tears to my eyes - every time we're admitted Darcy (all of

13 months) knows what's coming as soon as someone holds onto him - to

hold him still - for any needles or IV. He's already started to

associate being held with needles! (his first 6 weeks were fairly

intense with the IVs, tests and various other needles). I like Jodi's

idea of a small toy for every pin prick - bribery? maybe, but most

kids don't have to go through so much pain and fear, I think they

deserve some reward for it, and it gives them SOMETHING about the

whole situation to look forward to!

Steph

> Hello everybody,

>

> First and formost a happy and blessed new year to everyone.

>

> Second as faciltity manger responsible for snow rewmoval for a

church, I

> cannot write my thoughts on snow without serious censoring.

>

> Although (and her brother) have a cold now she has been

healthy

> for a couple of weeks and had a great Christmas. We still have not

figured

> out her ketones. She has the Doctors baffled. She was supposed to be

admitted

> Tuesday for addittional testing but that has been postponed pending

the

> results from other testing done her last hospital stay.

>

> 's hospital stays are getting tougher on her.. and on us.

She

> remembers now and knows what an IV, blood work etc. mean. Her last

hospital

> stay she had to have her IV changed, her G button came out, blood

sugar

> testing every four hours a skin biopsy. It was too much on her. It

took three

> nurses and me to hold her to get the IV in. The nurses were great.

One in

> particular did a great job talking with , calming her down

while she

> held her head gently. I had to hold back tears has I hugged

's leg

> while she screamed to go home!! Thats the part I hate. Listening her

cry and

> scream(justifiably) and I cannot do a THING for her!!!

>

> Its also harder on her little brother. He misses her and his

routine is

> interupted. It takes him a couple of weeks to get back to normal.

>

> S.: had a skin biopsy done for enzyme testing.

I know

> had one done for genetics. I want them to do the same for

> since they already have a skin sample. Was there a specific name for

the test

> done on ?

>

> To my friends,

> Peace and Prayers

> Mark dad to 5, G-tube