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.

4-5-11

Dreading Summer Time???

Yes, you read it right. I am dreading summer. Not because I don't like the weather because I do. But when you have a child with a disability & he's unable to sweat. I'm scared. Truly for the first time in a long time scared. Zackary is unable to sweat. This is the first summer that I've been aware of it. What does this mean for him? He can't regulate his body temp. I'm scared that if he gets too hot that he will have a heat stroke. It could happen. The Drs have warned me that it could happen. But I can't keep my other kids cooped up in the apartment all summer. I just don't know what to do. So next time that I take him to the Dr, I'm going to ask him what I should do.

During the day, I don't have the chance to think about things because I'm constantly busy with something, whether it be the other 2 kids or something that Zack is doing (therapy, Drs appts, Etc). It's the night time that seems to get the best of me when it comes to thinking about everything that is going on with him.

I feel so alone. I feel like I don't have anyone when actually I do have a "few" friends that I talk to on a regular basis.

But they all have healthy children. None of their kids have a disability. They are constantly saying that they know what I'm going through. But they have not the slightest idea. Unless you have a child with a disability there is no way that you will understand the pain and hell that I go through on a daily basis.

Okay enough with the pity party, vent & worries for the night

1-2-11

I can't believe a year ago today we started on this journey with Zackary & trying to find out what is causing all his problems. We are still no closer then we were a year ago. Its unreal. The only progression that he has made in this last yr is that he is finally walking. He's gained a lil over a 1 pound or so in a yr. Are u serious? The boy eats from the time that he gets up until he goes to bed at night. The stress is no different then it was a yr ago. The anxiety is no better then it was a yr ago. I'm constantly researching the internet to see if I can find out something on my own {with no luck!} But I will continue to search & search until I can no longer do it or I finally have an answer on what is going on with my baby boy.

Zackary Michael, Mommy loves you & will continue to do WHATEVER I have to do to get some kind of answer.

Saira & Joshua, {Even though you two drive me up the wall on a daily basis} Mommy loves you both more than you could ever know. I don't know what I would do without you & ur baby brother in my life.

There's to the next yrs of this crazy life as your mommy

8-22-10

I've been meaning to write and let you all know that the Dr did indeed call on Thursday (8-14-10) like they said that they would. I was in the middle of being at the dentist. The dentist was getting ready to lay me back and pull two teeth so we couldn't stay on the phone long.

The nurse said that Riley's did FINALLY called her to let her know what is going on. She said that Dr. B. from Riley's wants to do an extensive work up on Zackary and she also has a fellow Dr from genetics coming to see Zackary while we are there.

I'm hoping that we will finally get some kind of answer on what is going on with Zack. the mental hell that I have been going through since we found out that there was something wrong Zackary and they were unable to find out what is going on with him.

8-6-10

Zack's Drs appt

Had to take Mr. Zackary to the Ped today for a growth check.

Its been a little over a month since we have seen Dr. H. to see how things are progressing with Zackary.

Weight - 8.4 - Up 3oz in a lil over a month.

Height - 27 inches. - Up a 1/2 inch in a lil over a month.

He said that he was going to try to call Rileys when we left there, then he changed his mind and went to call them while we were still in the office. The Dr that we seen wasn't in the office today so her assistant took the call and said that she would have Dr. B call Dr. H as soon as she got in the office on Monday. He said that he wants to find out their next plan of action when it comes to the care of Zackary. He then said that if he wasn't happy with the plan of action that he would be sending us to another hospital to get answers on what is going on with Zackary. The next opition as far as hospitals go is in Chicago which is about a 3 hour drive for us.

He is still puking. Not as much as he usually does, but the last couple of days he has bc once again he's got a runny nose and is congested. Seems like it will go away for a couple of days then its back. Dr. H. said that it must be something virual and to let it suns the course. Just keep an eye on him. He's still on his Zinc. We went to pick it up today and the Walgreens (35 minutes away) that I called it in to didn't have it and had no clue where it went. So after calling our towns Walgreens we found out that someone that lives here and works that the Walgreens that fills it has brought it to us to pick up and never called us.

I've cried so many tears for the last 7 months that I didn't think that I could cry over this anymore. But I once again broke down in the office today while talking to Dr. H. I just don't know what to do anymore. I know I have to be strong. But I want to completely shut down for a few days but I can't. I have to be able to hold it together not only for Zackary but for Saira & Joshua. They know when I'm upset and usually the first words out of their mouths when I cry is " Mommy, I wish you didn't cry bc Zack is sick" it breaks my heart that they already know that there is something wrong with their baby brother. I mean I know that they are both smart but who would have thought that they would sponge up my feelings and everytime we talk about Zackary's health problems

6-23-10

Got a call back from Riley's

Hey everyone. Hope all is well with everyone. Sorry I haven't been around much. It has taken me almost 4 days to finally sit down and write this blog after I got the call from Riley's. When the Dr called me on Tuesday, I never thought that she would have the news for me that she did. I thought that she would be calling me to let me know the results of his blood test like she had told me.

She did let me know that she got the blood results back from the lab. His blood protein and zinc were low even though he is on a Zinc supplement. I'm not too sure what the blood protein being low means. His lactate & pryuvate was low as well. But I don't know what that is all about either as she didn't tell me.

I also got the news that he's got something called autonomic dysfunction. He is unable to regulate anything that he has to think about such as heart rate, blood pressure, body temp (which is causing the red & blue/purple with his legs & feet) and he's unable to sweat. They say that there is a underlying issue that is causing this problem but they can't figure out what it is. Prognosis after diagnosis is 5 to 7 years depending on the severity of this neurology disorder & underlying issue.

There are 50 million things that are running through my head but right now I am not going to get into that. I just wanted to let me readers know what was going on with him and what we found out.

6-18-10

Riley's Appt

Just wanted to give everyone a quick update on what went on at Riley's Children Hospital.

Zackary weighed 18lbs 11oz. He hasn't gained or lost any weight since the last Drs appt a month ago. Kinda happy about it but kinda not. Wished he would have gained something.

He is 27 inches long..... No change in length either.

His head size was 43cm (I believe)

They said that he was really short - We already knew that.

They said that he's the size of a 8-10 month old.

They said his weight is prefect for his length.

They are concerned about his hearing. They said that since he started talking so late in his development that there might be something wrong with his hearing. I have to set up an appt for a hearing test.

They are also worried about his head not growing. They said that it could mean that his brain is not growing either.

They took blood & I should have the results either Monday afternoon or Tuesday sometime.

They are going to talk to different departments at Riley's to see who wants to see him next....

I still didn't get answers but we got something even if it just a little.

I will update you on Zackary when I know something.

Thanks for reading......

6-11-10

Riley's Children Hospital

We finally heard from them yesterday. Which is a kinda relief but then again it isn't. I still need to know what is going on with my baby boy. We have to go on Wednesday at 2:30. And the drive is about an hour and a half a way which isn't as nearly as bad as it was to travel to St Louis and back.

He still isn't baring weight on his legs even with being in PT for the last 6 months. He'll do it maybe a few times with someone forcing his legs straight (the pt) but we've only got him to do without forcing him maybe a hand full of times. Any other time his knees are at his chest and he doesn't want any part of it.

His legs are still bright red, blue and purple. And no one can give us an answer on why they are discolored. They did start him on Zinc supplement as I've said before, and said that if the Zinc problem was the reason that his legs were discolored that they would be normal colr in about 2 week to a month. Well he's been on it for a lil over 2 months. There is still no change it in.

I was told back in March to file for Disability for Zackary. After a lot of talking with my husband and a few oither family members, we decided to go forth and file the claim but not to get our hopes up as in he hasn't been diagonsised with a certain disease or condition. (Which is the frustrating part of it all) We got a call at the end of May, saying that he had been approved for disability. Which is to help us with all the cost of driving to different Drs in different states to get an answer on what is causing the problems that Zackary is having. To read his story please look in the May entries for Zackary's story.

Thanks for listening to me ramble.

3-29-10

Update on Zackary

Quick update on Zackary before I hit the bed for the night.

Friday May 21, 2010.

We went into the Dr for his 18 month check up

He weighed - 17lbs 11oz (up 8oz in a month)

Height - 27 inches long

H.C - 43 cm

They still have no answer on what is causing all of his health problems.

He is still on his Anti Nasuea meds 3 times a day.

He's on his Zinc Supplement once a day.

They decided to up the dosage today from 4ML to 40ML

They are referring us to Riley's Childrens Hospital in Indianapolis

to see if they can figure out anything.

We are still waiting for a appointment date for Riley's.

I'm trying to stay positive, but its really hard when I feel so alone.

I have my parents, my husband and my best friend Amber,

Yet, I feel so alone.

I wish I had someone to could talk to that can understand the frustration

that I am going through on a daily basis.

For all my new Followers, If you want to know what is going on with Zackary

Please go Here and read it.

These are 2 pictures I took for his 18 months =)

Along with his Dr, His heart Dr and all the Dr's that seen him in St Louis Children Hospital, they put a claim in for disability back in Feb of this year. They called me on Monday stating that he did get approved. Its not a lot of money but it'll help us to the trip to St Louis if we have to go back and trips to Riley's in Indy when we go there.

Orginally posted on 3-22-10

Zackary's Appointment with Pediatric Gastroenterology

St Louis hasn't even sent the paperwork for his admission to the Dr's office. I had to take him to a Dr that specializes in Pediatric Gastroenterology to see if there was a problem with his stomach or it was acid reflux that is causing him to puke all the time. Prolly about 4 days outta the week he pukes prolly 3 or 4 times a day. He said that he knows that his vomiting has nothing to do with his growth problem or his gaining weight. He actually thought that he was only 8 months old. He actually turned 16 months yesterday. =( So no I haven't found anything out. I just know that the Dr that I seen today say that there has to be a under lying issue or syndrome that is causing him not to grow or gain weight. His also said that that there is something wrong, he knows that. He's as unsure as we are on what the problem is. I just wish that we would get some kind of clue on what is going on with him. It is so frustrating. I'm at my wits end right now. I'm trying to get through school and I can't concentrate enough to do my work earlier then what I want. I'm getting really discouraged BC no one is willing to help me or anything.


Zackary's Weight Today: 17lbs 5oz
Length Today: 27 inches
Head Circumference: 43 cm

Orginally posted on 3-17-10

Zackary had an appt with his Ped today for a check up after being in the Children's Hospital in St Louis.

He gained 3oz in 2 1/2 weeks. He does have 3 teeth coming in. He puked 3 times in the Dr's office & once on the way to the Dr's office. Dr. Hauffe refered us to Pediatric Gastroenterology at the other clinic.

Zackary's Weight Today: 17lbs 8oz
Length Today: 27 inches
Head Circumference: 43 cm

Zackary's story from my other blog

In Jan of this year, His ped referred us to Family & Children Connections for a Evaluation on his development. Because he was doing things later then what the Dr thought he should be doing it. He didn't sit up til he was 7 months old. Didn't start crawling until he was 9 months old. He's still not talking other then saying Dada. They have his development at 8 months level. He does an evaluation in July to see if the physical therapy has done any good.

When the Dr finally listened to me and realized that there was indeed a problem with Zackary and I wasn't just a crazy mother thinking that there was something wrong when there wasn't. They referred us to St Louis Children Hospital 4 hours away from us to a diagnostic Dr to see if he would be able to tell us something.

They done a complete skeleton scan and blood work. In hopes that would show something on what was causing all these problems (lack of weight gain, not walking, baring weight on his legs, losing weight, discoloration in his legs & feet)

Below is the letter that I received from them after our initial visit there.

There are a lot of terms on here that I don't know the non medical terms for. LOL

He had gained little or no weight since he was 9 months old and his weight plots in the first year of life, move along the 25th percential until about 7 months and then they have been flat from 7 months to 15 months. His length closely parallels his weight, moving along the 3rd to 10th percentile through the first six months and then almost no increase since that time. OFC moved down below the 3rd percentile and now is about the same distance from the normal range as his weight and length. His weight today is 7.6 kg, it is -3 SD.

He had his first tooth erupt after a year of age. He now has four. (As of 3-14-10, He's got 6)

He has had papulosquamous eruption diagnosed as eczema through most of his life and more recently he has had a confluent red discoloration of his feet and legs up to his nees which blanches on pressure. He also has a puffiness about his feet.

He will maintain himself in a seated position but will not support weight when held vertically and placed on his feet, either for is not cruising nor walking.

At 4 months of age he was seen and seemed to be normal in growth and development. He had bronchitis and was diagnosed with gastroesophageal reflux and was on ranitdine.

At 10 months he was seen and had a normal CBC, ESR, thyroid studies, and echocardiogram showed a small PDA. He was diagnosed with eczema.

At 12 months he was given MMR, Varivax, and hepatitis A vaccines. The slow growth was noted as a problem as was the unusual erythema of the lower extremities.

At 13 months, again the growth issues were identified as a concern and blood was drawn for CF testing and was negative for delta f508 mutation.

Chest Xray (8-21-09) shows normal lung and cardiac silhouette.

At 9 months of age, a 2D echocardiogram showed a small PDA with the left to right shunting and otherwise normal intracardiac anatomy.

We were admitted into St Louis Children Hospital on March 9th until the 13th. We seen about 50 doctors while we were there. We will have no answers really on what is causing the problems that he is still having. They drew blood, brain scan, brain stem scan, upper GI & Lower GI scan, ultrasound on his legs, hips and feet, another CF test (actually 2). I know there are something that I missing.

On March 17th, we had a follow up with his Ped after the admission to STLCH. He was up to 17lbs 8oz. He puked 3 times while at the Drs office so his Ped referred us to a Pediatric Gastroenterologist the following Monday.

(3-22-10) St Louis hasn't even sent the paperwork for his admission to the Dr's office. I had to take him to a Dr that specializes in Pediatric Gastroenterology to see if there was a problem with his stomach or it was acid reflux that is causing him to puke all the time. Prolly about 4 days outta the week he pukes prolly 3 or 4 times a day if not more. He said that he knows that his vomiting has nothing to do with his growth problem or his gaining weight. He actually thought that he was only 8 months old. He actually turned 16 months yesterday. =( So no I haven't found anything out. I just know that the Dr that I seen today say that there has to be a under lying issue or syndrome that is causing him not to grow or gain weight. His also said that that there is something wrong, he knows that. He's as unsure as we are on what the problem is.

We had a follow up appt on the 15th of April with the genetics team that we first seen while we were admitted into the hospital. He was finally up to 18lbs at 17 months old. They thinking that Zackary has got a Zinc Deficiency. So they wrote me a script for Zinc. They said that is the zinc problem has anything to do with the color is his legs being off that they would clear up in about a week or 2 after starting the supplement. They are also thinking the there might be something in his body that is blocking the Zinc from getting into his blood stream. The only way to find out if to have a test done but no one in the USA does this testing so they would have to send his blood out to a research lab out of the USA. They attempted to do another Cystic Fibrosis test done, he wouldn't sweat. I tried to tell them that I've never known him to sweat even being in the heat all day through the summer.

(4-22-10) We went to the Dr to see his Ped. His ped gave us a script for reglan to see it that will calm down the whole puking incident. We are suppose to give it to him 2 times a day. He was down to 17lbs 5oz. Which means he's lost over a lb again. He also said that he is having troubles with STLCH communicating with the office and still hasn't heard anything from them. I'm really starting to overly frustrated with this whole deal.

The Reglan wasn't working as we hoped, so I have to now give it to him 3 times a day until we see the Dr again on the 21st. Its still not helping a lot. The color in his legs haven't changed. They are still as dark and purple as the pictures above. When we go to the Dr on the 21st, if they haven't heard anything by then I'm telling him that I want referred to somewhere else for a second opinion. There is Riley's Children Hospital in Indianapolis Or Shiners Children Hospital in Chicago. I NEED to know what is going on with my baby. This is just crazy. Sorry this is so long, I just wanted the other girls to know what was going on with him like I said so they wouldn't be confused when I talk about it. I will update you on how he's doing especially after the appt on the 21st.

At the appt on the 21st, I had a complete breakdown. I told Zackary's primary dr that I could do it anymore and that I needed some kind of answers. He asked me if I wanted to continue with STLCH or if I wanted to go somewhere else. I told him that I no longer wanted to waste my time with STLCH because in 6 months they still couldn't give me any answers. So he said that he would make some calls and have someone get back to me.

I got a call about a week or so later stating that they had indeed got ahold of Riley's Childrens Hospital. They took Illinois Medical Card and I had to wait for them to call me to set up an appt. Right after I got off the phone with the Peds office, Riley's called. Our appt was set for June 16th @ 2:00pm.

When we went to the appt the new Dr (on the 16th) said that there was a few things that she was concerned about.... The first thing was him being so short. He's only 27 inches at almost 2. He's gained 9 inches since he was born. They are worried about his hearing. He still isn't talking. he just now started to babble but doesn't say any words. They said that since he still hasn't started talking that he might have something wrong with is hearing. And his head isn't growing either which they are worried that his brain isn't growing. So I'm stressing over that.

Then they called me this past Tuesday (22nd) and tell me that he's got something called autonomic dysfunction. He is unable to regulate anything that he has to think about such as heart rate, blood pressure, body temp & sweating. They say that there is a underlying issue that is causing this problem but they can't figure out what it is. Prognosis after diagnosis is 5 to 7 years after diagnosis depending on the severity of underlying issues & this neurological disorder.

Summary of Zackary

I'm eventually going to transfer all the post from my other blog over here bc they give more detail

Zackary Michael was born on November 21, 2008 at 7:33pm via c section.

He weighed 6lbs 6oz and was 18 inches long.

He was fairly healthy other then common colds.

He was diagnosed with a PDA (hole in his heart) at 9 months old.

We were sent to a Pediatric Cardiologist who he was seen every 6 months since then.

In Jan of 2010, His ped referred us to Family & Children Connections for a Evaluation on his development. Because he was doing things later then what the Dr thought he should be doing it. He didn't sit up til he was 7 months old. Didn't start crawling until he was 9 months old. He finally started walking at 2. He just started talking here lately.

In Feb of 2010 we were sent to St Louis Children's Hospital for our initial visit.

(I'll post the letter that I recieved from them in another post)

After our first visit with STLCH, we were admitted a month later for 5 days.

They ran all sorts of test, with no answers on what is causing all of his problems.

*lack of gaining weight, failure to thrive, not baring weight on legs, discolorization of legs&feet* jus to name a few.

6 month into going to STLCH every month, we still didn't have any answers.

They were acting as if they weren't going to do anything else.

I came to his Ped, with my concern. He said that we would try other children's hospital.

This is when we were referred to Riley's Children Hospital in Indianapolis.

Our first visit was in June of 2010, we have only seen them again once.

So here we are at other children's hospital. Children's Memorial in Chicago.

We had out first visit on June 3rd, 2011

I'll post about that next post.