Update on Spencer

[Guest guest]

Well Hello everyone,

We are back home for less than 24 hours for an appointment for me. It's

been really crazy to say the least.

Since it has been so long I will just give you all the update from the last

couple of weeks. Spencer just got out of the hospital from being there for

a couple of weeks. I took him into his surgeons office to look at his CVL

site b/c it looked like it was infected. It has some puss that came out of

it. Well right there they admitted him and pulled his CVL the same day.

They put him on Vanco and to prepare him for surgery. They did decide to

move his G-tube and put in a J-tube and put in a new central line (We did a

MRI/MRV/MRA and found two veins left in his chest yeah!). Well he decided

to get really sick and ended up on 4 times the amount of steroids, a picc

line, and breathing treatment of two different drugs for about 5 days. We

tried about three times to take him to surgery and all three times they said

he was too sick. So we are home now and surgery is scheduled for the 21st

of this month.

Dr. Putnam was acting a little quiet and distant this last hospital stay and

my husband finally found out why........he has been thinking pretty hard

about Spencer and our new baby.

First he wants us to seriously think about putting the new one directly on

Elecare (as he believes this disease is genetic) so that we can by pass some

terrible times with ng tube and G-tubes and so forth. He told us what ever

we do, do not do the D*** Nissan on the new baby, it's for reflux only! His

words.

He also has a theory about Spencer. Although Spencer seems to have

Gastroparisis, CIP and so forth he thinks he has something called " Visceral

Hyperalagesis " (sp) in addition to the Eos's disease. He explained it like

this.....that Spencer experiences an extreme amount of pain when the gut has

to do something. In other words, when Spencer gets fed a bolus of Elecare

it will make his stomach bigger (which is normal) but for him it causes an

extreme amount of pain and because the brain has an impulse for pain in the

gut it tells the gut where ever it hurts to shut down. So, in essence, he

mimic's a lot of disorders. How we will ever treat this, I have no idea.

I have not looked this up yet on the web, but I think it is kinda rare...but

now sure.

I will keep you posted though on how Spencer does with the surgery on the

21st.

As for me........well, I am due on the 8th of August. I have seen the doc's

3 times in Cinci and will deliver there at a hospital called Bethesda North.

I have had two ultrasounds so far. IT'S A GIRL!!!!!

I am so excited and so is both Mike and Spencer. We are going to name her

Kelsey Marie (Not sure on the spelling though). I am going to the high risk

clinic every two weeks and also am doing ultrasounds frequently. On the

last ultrasound they found something called bright bowel.

Interesting......it can signify Cystic Fibrosis, obviously bowel disorders,

blocks and so forth so we are keeping close eye on it. Please pray that she

will be okay. Other than that, physically, she looks very normal. (Sharon,

didn't Clayton have bright bowel???)

I decided to do a C-section again.........on the 1st of August, unless she

decides to come early of course. My tummy is getting big and I am starting

to really feel pregnant.

In 7 weeks our lease is up in Michigan so we are going to pack everything up

and put it in storage. Mike is going to try to work out with his work to

work three days in Michigan and two days in Ohio so we can keep the same

insurance and also be with a company that is so understanding of Spencer's

condition. I sure hope that this works out. We really want to get a house

by May, so hopefully that will work out too. I told Mike, if I have to come

back from the hospital to the RMD I will scream bloody murder! LOL!

Well, that is about it in the Allred household......I will keep you updated

as things progress.