Russell-Silver Syndrome and growth dissorders

Surgery Over

2009-12-12T20:22:00.000-08:00

Well he is now recovering at home after a long 6 days in the hospital. Surgery went well had a few set backs with his internal organs not being where they were supposed to be, but they fixed that and continued on with the surgery. He has a long road ahead of him but he is a fighter so he will do great. He has very limited activity and his food has to be pureed on the other hand he has went through 3 gallons of icecream lol... Thanks to well wishers and keep following your heart it will lead you in the right direction.

2009-11-28T18:55:00.000-08:00

Matthew goes in for major surgery on monday. I hope I am doing the right thing for my little boy. He is going to have a fundoplication or stomach wrap done so he will hopefully no longer have reflux which is causing damage to his esphagus. There are plus and neg. to this surgery and the most scary thing is if it works to well he wont be able to swallow anymore, a plus if it works no more reflux and 1 med. removed from his list.
Somedays I sit and wonder when is enough enough or is there such a thing when it comes to your child? I would go to the end of the world for him. I hope I have always made the right choice when it comes to him and his health care. I am so scared and nervous about the up coming surgery, will he wake up ok, will he get an infection, will it work, and will it work too good? My head is just spinning.

Flu

2009-10-27T18:42:00.000-07:00

My little one has H1N1 I have him on fluids via his feeding tube and just keeping him comfortable. I feel so bad for him he looks and feels so miserable. Just when you think things are going good for him something like this happens. He is strong and will pull through this like he does everything else. Hope everyone elses kids are doing good and stay healthy.

Matthew goes to school.

2009-08-18T21:26:00.000-07:00

I took Matthew in to meet his teacher today it was a very sad but exciting day. I am sad my baby is growing up and heading to school but excited for him to get out and meet some kids. He is in a special class for kids with needs. So he will only be going for 3 hours to start and see how that goes. He has since found out he will need glasses in his near future, not a big surprise since we have a strong family presence of people needing glasses. Will get some pics up soon of his first day of school. Until then happy thoughts.

Matthew and daddys race car

2009-06-01T12:16:00.000-07:00

Here is a picture of Matthew and his dads race car he loves to watch his dad race. He is also enjoying riding his pony (will get pics soon ). He had a fun weekend camping and fishing, camp fires, smores, playing, riding his bike and who knows all that we did. It was great!

A doctor who cares

2009-05-12T19:25:00.000-07:00

Matthew got a new pediatrician today and he actually seemed to care about everything we talked about and seemed to be appalled by the way doctors here are treating him, to bad we still have to drive 200 miles (round trip)if something happens but atleast he listens and cares. So for once I am pleased with the out come of a doctor. He asked about concerns, questions everything he was great and an added plus he is very nice. Just wanted to post the good news. Hope all is well for all my friends and their loved ones. Be well and talk soon.

Doctors???

2009-05-05T13:33:00.000-07:00

I am extremely irritated right now my son woke up and said he can't hear out of his left ear. So I call his ENT 3 hours ago and still haven't heard anything back. I am not a doctor but a 4 year old saying he can't hear and having pain in that ear is not freaking normal. You would think that someone would return my call even if it is a nurse especially with all his medical issues. I am so very frustrated right now I could scream. It is funny because he hasn't complained of any pain he says it hurts but he is not fussy or crabby. I'll tell you what though he sure talks louder lol.. but anyway just had to vent a little.

It never stops

2009-04-26T20:04:00.000-07:00

Well as I said before he had croup and bronchitis and now we can't get rid of the bronchitis, it has been 2 weeks and he still has it. I feel so bad for him it seems to be one thing after another. We are doing breathing treatments every 4 hours and he has been on antibiotics for 2 weeks and will probably have to get the doctor to get him some more. Well anyway that's whats going on right now. Best to all.

Matthews 4

2009-04-23T08:41:00.000-07:00

Matthew turned 4 on April 16th, they grow up to fast. He has croup right now so he isn't feeling the best. He finally weighs 30 lbs, still has the stints in his eyes and of course he still has his Mikey. One cool thing I haven't shared is last fall a guy gave him a pony of his own to love so he REALLY looks forward to seeing him everyday. We have noticed one side of his body growing slightly faster than the other and his face is getting more triangular, and for some odd reason he has been falling a lot. Well that's all for now. Here are a couple b-day pics.

Matthews Doctors

2009-02-11T17:40:00.000-08:00

I wanted to let people know about the people that care for Matthew. He has some wonderful doctors in Iowa City. If it wasn't for these doctors I am not sure if my son would be with me today. The doctors in the town I live in well let me just say I think their degree came from a cracker jack box because they have NO bedside manor, wouldn't listen to a word I would say, thought that I was some over bearing mother who knew nothing. Then finally we were referred to The University of Iowa Children's hospital. We found the best doctors ever there and finally some one to listen to what I had to say. Not only were the doctors great the nurses everyone we ever came into contact with was great. I remember one time I rushed Matthew to Iowa City, Matthew had his tonsils removed he was in the hospital for 3 days still wasn't right but doctors said once he was home he would perk up, but 2 days later we were back he still wasn't eating so he was admitted to the hospital for another 4 days, we went home again, and 2 days later he had a fever of 103 so I rushed him to the ER and he was admitted again for another 3 days. The doctors said he should be recovered from the tonsillectomy that that wasn't why he was sick his pediatrician told me he was doing it for attention so he was again sent home still not doing well and not eating. We went home and the doctor that did his tonsillectomy had us come back 2 days after we went home just for a check up and he was still ill and not at all doing well. When I asked him if maybe his blood sugars could be low he said no we checked them 2 days ago and they were fine. We left his office, I called a nurse down in Iowa City I was in tears frantic that Matthew wasn't going to live if he didn't get help so she had me bring him down there, when I got to the ER in Iowa City he was started on an I.V immediately, they checked his blood sugar and it was 50 that's not OK like the other doctor said. Well we spent another 4 or 5 days in the hospital come to find out there was an infection sealed behind the scabs from his tonsillectomy, he had to do 5 days of I.V antibiotics, and he had some kind of white spots in his mouth and on his body, so he had to be treated for that. So I think when dealing with doctors if you are not happy with how you are being treated keep looking there is a doctor out there that is still a doctor not someone who is in it for the money I have about 6 doctors and nurses that are the best people ever and I know if I called them or e-mailed them they would do what ever they could to help my son and that means the world to me. Well just wanted to let everyone know there are still doctors out there that care for their patients. Keep the faith if you have one that isn't.

Matthew 2 weeks later

2009-02-11T11:54:00.000-08:00

Well Matthew is finally better after surgery, and I have found a new friend to talk to thanks to our blog. It took Matthew almost 2 weeks to recover from his surgery, and the getting ill immediately after. But tomorrow we face a new challenge, I have to take Matthew to a Doctor for kidneys I am hoping it is nothing but if it is then we will deal with what ever it is.
I also wanted to ad to anyone who has a child with any growth disorders there is a foundation set up to help with several different disorders that children may have. It is called The MAGIC Foundation. They have information, names of other families you can talk too, and lots of other stuff. If you have not looked trust me it is worth the while to look at and it is not or RSS only there are many growth disorders they help families deal with. The website is www.magicfoundation.org
I also wanted to add a few more words about anyone looking, if you still do not have a diagnosis for your child never give up because with out you your child has nothing and you have to fight for them because unfortunately a lot of health care providers just don't seem to care and think you are crazy and just worrying too much and about nothing and if I would of given up on my Little guy I have been told he would not be with me today. So please never give up, if you think there is something wrong keep on it until you know for sure and you are certain there is nothing wrong. No one knows your child better than you, you need to be the voice for them. Keep fighting and know you are not alone in the fight there are others out there going threw the same thing.
To my new found friend I am praying for your little guy. Hope he is doing good.

2009-02-04T17:44:00.000-08:00

I see I have some new friends that have contacted me, and I thank you and now consider you part of my family, because lets face it we need all the support we can get when it comes to our children.
Matthew had his eye surgery it was hard this time ha had a lot of pain I felt so bad he was crying so yes so was I. He didn't have all the pain with previous procedures as he did this one he just hurt so bad :(. Then too make things worse not 2 days after surgery he was sick. Throwing up and he has went on hunger strike once again. He has ate nothing but bites here and there for days now, so unfortunately I think we will have to head back to the hospital. So I will keep everyone updated and please feel free to post anytime or e-mail me at stacy.witzke@gmail.com. My thoughts and prayers are with all of you.

Matthew update

2009-01-26T12:18:00.000-08:00

Well I have not been on here for a long time now because I didn't have a computer so there is a lot to catch up on. Matthew is almost 4 now and is 28 lbs now he has a feeding tube placed, has had 2 eye surgeries and is going in on wednesday for another. He has had several staph infections in his sinus' and he is now seeing a doctor for migranes.

Although he has several problems he is still as happy as any child, always has a smile on his face and takes each day as it comes. It is funny how strong a child can be, I never knew how much they can endure, I find him amazing every time I look at him. I don't think I would be in the spirs he is if I were in his shoes.

I see a couple moms have left me messages and sadly I missed you but if you are out there please contact me I am sorry for missing you. I know how you feel and would love to talk. I have other kids and me and MAtthews dad are together but he does not deal with all these issues very well so I feel all alone somedays and would love to have someone too talk to.

I will let everyone know how his surgery goes and pray for your children who are going through the same as my boy. The picture os of Matthew and his puppy.

Chuckie Cheese

2008-05-03T09:27:00.000-07:00

Nothing like a little fun after a trip to the dentists office. All the kids had to go to the dentists office so we decided to let them have a little fun after wards and went to Chuckie Cheese for a little fun. Unfortunately Matthew left with a black and blue eye.

2008-03-27T09:03:00.000-07:00

Today will be a short blog, I just want to tell all the families out there that if you are in the Iowa region I am going to be trying to get together a walk for the Magic Foundation. So if you would like to donate money, time, anything, or if you would like to attend please contact me, or leave a comment. I am also going to be doing some fundraising to try to get money to join there wonderful foundation and be able to go to the convention they have, and to get money through fundraising for their cause also.
I also want to tell everyone who has a child that is sick and doctors still don't have an answer, Don't give up! There are answers out there you just have to find them so please keep looking the answers are out there. If you need someone to talk to I am here and will listen.

Living with RSS and growth disorders

2008-03-26T13:00:00.000-07:00

Since the day my son was born he was so small, he weighed 5lbs, and was supposed to be a 10 or 11 pound baby, so we were a little surprised to see such a small baby but we didn't think anything about it. From the first day he did not eat well was vomiting with every feeding so they changed his formula to a soy and after 4 days we went home.
We were home for 5 days when I took him in because he was still vomiting sometimes violently, so he was hospitalized and was diagnosed with Reflux, so he was started on meds and his formula was changed again to Enfamil AR. Still not eating well and months later to little to no growth we were sent to a GI doctor and he increased his dose of medicine and had me add cereal to his formula.
He was put in the hospital several times, and finally when he was 3 months old they found out that his Thyroid wasn't working properly, so we went to yet another specialist, she put him on thyroid medicine and we go for checks for that every 3 months.
My son also had multiple ear infections, episodes of violent vomiting, tubes placed, adenoids removed, tonsillectomy, numerous sinus infections, C-Diff from frequent use of antibiotics, Rotto virus, always the said failure to thrive, my question was always why?
My son has many specialists and will soon be 3 years old and we recently received a name for the vomiting, called Cyclic vomiting, so that was good news, we are also waiting for the final reports on whether or not he has RSS. The genetics Doctor was telling me about how he has a triangular shaped face and some of the things he has been dealing with for almost 3 years now are signs of RSS, so we are hoping to know soon, and if that isn't it we will continue to look for answers for my son.
So in short I hope to help others out there who are faced with questions and I hope to get advice from others who have already dealt with growth problems in them selves or there children or loved ones so please fell free any help is greatly appreciated.
Stacy