Chicago appt & Update

Zackary woke up sick on Monday morning. He's got a really bad cough, runny nose & a low grade fever. Now if you have been keeping up with Zack's story, then you know he doesn't sweat so it makes it really hard for him to fight off any type of fever or hottness. So if he isn't any better by in the morning then it looks like we will be making a trip 35 minutes to the Dr. There is an ER here but they have no clue what is going on with his health, so I feel more comfy taking him to the Dr or the ER there then here.

Chicago update: Everyone gets genes from both their parents, Well one of the genes of Zacks is almost completely deleted and the other one is partially working. So they are testing them to see what is actually going on with them. I will know the results in 2 weeks. Plus she's (Neurologist) trying to schedule 3 or 4 different appts or test in one or two days so that we don't have to make 3 or 4 trips during the month because we don't have that kind of money.

I will keep everyone updated as I know what is going on.

It's me Zackary

My mommy is having a really hard time right now. She's really depressed. She just wants some answers on what is causing all my problems. She's struggling to find money to get me to the Dr's that I need to go too. Mommy said that she would keep u updated on me & my progress as much as possible, but if you don't hear much from her, now you know why. She needs to get happy for her babies...

Heart Appointment

Hello, I know its been a while since I've updated Zackary's blog. We've been having some personal family issues that I needed to take care of away from this blog. I took Zackary to the heart Dr yesterday {6-5-11} is Springfield. He is finally up to 22lbs. Woo Hoo. Its a big step for him. He's only gained 9lbs in a year since Dr. N seen him last. Poor Boy. Dr. N was VERY excited to see that he was finally walking. He was only crawling this time last year. He wasn't even pulling himself up then either. We got a lot of compliments on how cute he is.

{I know he looks like his mommy :)}

This is what he done while he waited for his EKG. They bribed him with cookies LOL. He done really good with both his EKG & his Echo cardiogram. He does still have the hole in his heart.

They aren't worried about it right now because is hasn't grown in size since last time. He said that they could open up his chest & close it himself but the risk is too high right now. He said because we still are unable to come up with what is causing all his problems he doesn't wanna risk any more harm to Zackary. He does want to see us back in a year for another Echo & EKG. If the hole is still there then we will talk about closing procedures. But I'm thinking that I really don't see any point in closing it because it isn't causing Zackary's health problems. I guess we will see within the next year what goes on before I make that choice.

Zackary's Benefit

We are currently in the process of organizing a benefit to help with the cost of medical & trips to the various hospitals that they have us visiting. If you or anyone you know would like to donate to help this cause please email me at Proudmommiiof2@aol.com

Zackary Rummer Benefit

Zackary is a 2 ½ year old that has several undiagnosed medical conditions.

His mommy & daddy have been fighting for the last year and a half to find out what is causing all his medical problems. They have been to two children’s hospital

Now they are at their 3rd children’s hospital in Chicago.

Date: August 13, 2011

Time: 2:00pm - 6:00pm

Place: Ike’s Bar

2526 Georgetown Rd.

Danville, IL

Benefit is going to include, live entertainment, 50/ 50 drawing , and auction. Please come join us to help raise money ,so we can find out what is wrong with Zackary and get him the help he needs.

Update

Zack is sick again =(

He's got a cough & a runny nose again.

The dis colorzation in his legs are back after being gone for a few months. Any time he walks now they get really really red & are extremely hot.

I really wish they would find out what is going on with him.

Emily from Children's Memorial called back saying that she was looking into somewhere for us to stay and any help that they could offer us to get there and while we are there. So I guess we will see what she finds out when I get a call back.

They still haven't got any test results back :( which I really didn't think they would this soon but it was worth a shot to ask.

Call from Children's Memorial

Over this last year and a half, I've had a lot of emotional breakdowns. Today is no better. We have been to 2 different children's hospital and now we are currently at our third one in hopes that we will finally get the answers that we have been looking for all this time. Our first visit with Children's Memorial in Chicago was almost 2 Fridays ago. I just got a call from them stating that they want us to come up there for an overnight visit in July to see an Autonomic Dysfunction specialist. now comes the fun part of finding a way there and money to get there bc we only have disability from my husband to live on. I can't find a job because no one will hire me because of all the time that I have to take off for all the out off town appointments.

Children's Memorial - Chicago

We had our first appointment at Children's Memorial in Chicago on June 3, 2011.

His weight (by their scale) was 23lbs.

I'm not too sure about his height or length.

The genetic counselor (Emily) came into just to get a history on what is going on with Zackary before the Dr (Angler) came in.

He said that he got everything that Riley's & STLCH had sent Dr. H.

He stated that there are a few things that were in the report that he wanted to look further into.

STLCH & Riley's both did several attempts at a CF test & because he is unable to sweat they couldn't do the sweat test. When the blood test was done for CF, it came back slightly abnormal so Dr. Angler redone the blood test for a more in depth look.

He done a bunch of other blood work but I'm not sure what all test he did

(8 tubes of blood was taken)

It will be another 3 to 5 weeks before we get all the test results back.

Emily said that she would call me as soon as they come in.

And also send a letter with everything that we discussed & recommendations.