Spencer Update

[Guest guest]

Hello to all, This is here Emailing you from Farmington Hills,

Michigan.

First of all I would like to clarify exactly (exactly meaning to what, we,

as of this moment in time know as exactly) what Spencer's problems

are......

1. Severe Primary Eosinophilic Colitis (Disease)

2. Eosinophilic Gastritis and Esophogitis triggered mostly by allergens.

(Disease)

3. NeuroPathic Motility Disorder of the small intestines. (Disease)

4. Non-Functional Stomach.......to what extent we are not sure of at this

point in time, but will be further tested as Spencer becomes more stable.

(Possible Disease)

5. Dumping Syndrome (Caused by the *#$%^*# GI Doctors in Utah, due to the

Nissen Fundoplication surgery, which severed his vegus nerve at the bottom

of the stomach and misdiagnosis of Severe Reflux, Failure to Thrive (due to

the fact that they really didn't care enough to research as to why the heck

he couldn't gain weight and was pooping 15 times a day and dry heaving all

of the time) and Russel-Silver Syndrome).

6. Severe allergies.

7. Asthma.

8. Total oral aversion (will not eat by mouth at all, not one drop, even

water.)

Bottom line........Spencer's whole digestive system does not work!!!!

Now that that is all straightened out, I would like to update you as to his

condition. Spencer currently has a Central Line for TPN (Total Parental

Feedings, meaning he gets feed a special solution into his blood stream to

his heart.). This IV line is sewn into one of his main arteries to his

heart and comes out just below his nipple. Problems with IV TPN feedings

over time is liver damage and ultimately liver transplant with a 70 %

mortality rate. We are praying that this does not occur. Also more of a

risk than liver damage is a blood line infection. If a bacteria enters

into his blood stream it attack much quicker than a normal roll of the mill

infection. Definitely a big risk and happens all of the time I am told.

This has not happened so far.

Spencer did have a close call while we were in Utah moving and his actual

IV line broke and we didn't notice for a few minutes and blood was

everywhere. Very scary. Luckily no blood infection there. I think that

he is truly watched over by his Father in heaven.

He also has a Gastrostomy tube (Little button tube looks like the button on

a blow up beach ball) for formula feedings through a drip pump. 30 cc's an

hour right now.

He gets ulcers and bleeds internally about every other month, so he is on a

an anti-coagulant medication called Carafate. He is also on strong doses

of Prednisone, which is a steroid. This is the treatment for the Severe

Primary Eosinophilic Colitis, Gastritis, and Esophogitis.

He gets his TPN feedings for 13.5 hours a day and G-tube feedings for 13.5

hours a day of an elemental formula called Vivonex Pediatric.

Before coming to Pittsburgh Spencer was totally underweight and dry heaved

and had terrible diarrhea. We came to Pittsburgh and all the above

diagnosis were made. They started treating him and all symptoms went away,

except he couldn't poop for like weeks at a time. Just a sign of an

underlying problem of the large intestine or rectum. We will soon see.

Before this last Sunday Spencer was doing great......But then it started.

We had started to taper off on the steroids (just a tiny bit) and he

started having all of his symptoms back. Doctor told us to up his Steroids

back to full dose on Sunday. So his symptoms had not improved at all and

then last night he started dry heaving and sweating and gagging. Then this

morning for three hours straight he did this. I mean for actual three

hours straight. Then I gave enema and lot's of poop came out and it helped

a lot but he is still doing all of the above quite a bit.

I spoke to the doctor this afternoon and he said we are back to square one,

full dose steroids and if no improvement back on to IV Steroids. Backing

way off on formula in his tummy drip at night. Needless to say, I am very

depressed about this and I think that I need to come to terms that I will

be dealing with a severely sick child for a long time.

On a lighter note, Spencer is a very happy child when in non-sick times.

He is although a very traumatized child and shows signs of this in many

ways. We will be dealing with this soon.

Spencer is a very sweet child and I thank God every night for him being

given to me.

Mike is loving his job at CalSonic's NorthAmerican as Project Eng. He

speaks Japanese every day. He loves it. The benefits are wonderful and

great for our family. They treat him well.

I am trying to get settled here and finally Oct 1st move into a real home

where we will stay for much longer than 30 days. (We are in temp living

furnished apt set up by Mike's company.) I am also trying to get all the

kinks worked out with my company and what will soon to be arranged with

them. (For those associated with ComUnity Lending.....the economy out here

is amazing!!! Mac or Mini Mac in the near future would be great. I am

passing my cards out and getting the ComUnity Lending name out in the

Mortgage Lending World and currently doing three retail loans " Utah " and

when lic in MI will already have one to do.)

Michigan is beautiful, lakes, forest, and rolling hills. Just love it

here. Only thing, Mosquitoes! I hate them and have them all over. Lot's

of bugs, unlike Utah. The weather changes every 3 minutes they say here

cause of all of the great lakes and all of the 100's of lakes not big

enough to put on the map.

I miss my family very much and look forward to future vacations back to

Utah.

I hope all is well with all of you.

God Bless,

, Mike and Spencer

P.S. For those of you on the email lists, sorry to go into so much detail

about certain Medical information regarding things that you already

understand.