Hello -
My name is Gwen. My husband, John, and I have been married for 8 years. We have an 11 month old son, Nicholas, who was born at 36 weeks. When he was born, we were told that he was perfectly healthy. We started to suspect something wasn’t right around four weeks later and we were still at the hospital. J/K. We started finding out about Nicholas’ issues the morning following his birth...but we were there for 5 weeks.

Before we left the hospital, Nicholas had been diagnosed with Down syndrome (confirmed - Trisomy 21), AV Canal, post urethral valve, chronic renal failure/hydro-nephrosis and hyperthyroidism. He had also had three surgeries. At one week of age he had stints put in his kidneys to allow his urinary tract some much needed rest. At about 2 ½ weeks of age he had the blockage below his bladder removed. Then just after his 4 week birthday, he had a nissen and G-tube done. To this day, he is solely tube fed. He lost the desire to take a pacifier a few weeks after we were home....and just shortly after he started gagging and retching. The gaging and retching continues to this day without and idea of the cause or a cure.

On March 14, 2006, his heart was repaired, which got us another 2 week stay in the hospital. Once we got home things started to look up, or so we though. The Thursday before Easter, he started getting little red spots on his forehead. It looked like they he’d rubbed it on something or it was rubbed too hard. By the following Monday, they were all over his face, on his forearms and on his shins. We happed to have an appointment that day and we were referred to an hematologist/oncologist...ASAP. They never did find the reason for the spots, or petechaie, but the doctor did find immature cells in his blood. So he continues to monitor him closely.

While rocking Nicholas to sleep on July 5th, I noticed that he was having a slight jerking problem. We called one of his specialists and were instructed to take him to the ER. They were waiting for us when we got there. They took his vitals, drew blood and ordered a CAT scan. Everything came back normal. The specialist wanted to make sure and ordered an EEG. It was done 2 days later. That evening we found out that Nicholas was having seizures, Infantile Spasms, and was put on medication at that time. As of July 27th, he is seizure free.

Nicholas is a very happy baby. Usually content and loves to snuggle. He’s newest tricks are rolling and reaching for things. He is getting ready to cut his third tooth too. We have OT and PT from our county school district that come into our home for an hour each once a week and we also go to the hospital for OT/PT and Speech every other week. He is thriving beyond expectations for having the issues he does. He is just about 22lbs and reaching 29 inches. He is the love of our lives...and every one else’s he has been in contact with.

We are very excited to have found this forum. We are hoping to find some great information.

Thanks for taking the time to read our story,
Gwen

PS - I would have added a picture, but can't get it to work.

HEY, you made it here!! I wasn't sure if you got my post on the other board... but it got me into trouble. I got my account suspended for talking about other forums. Here's my appeal- they let me back on- but this is the best forum!!!

Quote:

I stated in my post that I wasn't sure if I was allowed to talk about another forum... I guess I wasn't. The really sad thing is there was a mother reaching out for support (she asked for information on forums)- unfortunately, support which is not in abundance on your forum. I watch your forum and try to participate- because I know it was the only forum I could find for a long time. But, frankly, it is hard to get a response and I find it frustrating how long it takes to get any posts. This mother was in need of information on multiple subjects and I was trying to support her. I never been on any other forums besides yours and downsyn... and when I signed up I never really looked at any of the rules- since my life was in a tail spin at the time. I didn't try to break any rules- honestly, I checked your forum really quick before picking up one of my older children from school. I tried looking for an e-mail address, but there was no contact information for her. I guess I should have tried some other way to contact her off-line????? Anyway, I feel it is a shame that you have suspended my account- I enjoy looking at the posts that are there and have a lot to offer.

Anyway, glad you found us... I know you'll love it here!~!!!!

Yeah, I made it....several hours of typing...and 3 tries. I kept having to log back in and would loose what I wrote. This time I got smart and put it on WP first.

The other kicked me out too. I didn't appeal. I was shocked that they would do it to begin with. I sent them 2 emails. One befor and one after finding my mistake. I told them that they didn't need to reinstate me. I could have understood if it was unrelated....oh well..

Thanks again for telling me about this forum. I think this is exactly what we were looking for!

Gwen

Welcome Gwen, Nicholas and family - thanks for sharing your story. Sounds like you have quite the fighter on your hands. I'm Jen mom to brock who is about 14 months. We live in Iowa. There are several families on here who have dealt with all of the health issues your Nicholas has gone through. Can't wait to see your photos.

Welcome to DownSyn! I have 11 month old identical twin boys with DS. Hope to hear more about your son soon! Glad things have calmed down a bit for you.

Hi and welcome...I am a recent joiner as well, but this seems like a great group.

Hope to hear more about you and your family..

Hello and welcome! You'll love it here, there are lots of parents here who have been thru many different ordeals. We try to help each other out and support everyone.
Can't wait to see pictures!

Welcome Gwen and Nicholas. You will love it here it is so helpful. My name is Gloria and mommy to Samantha who is just the same age and same birthday as Nicholas.

Gwen, welcome to DownSyn!!! Can't wait to see pictures. Glad you have joined.

Hi Gwen & Nicholas:

Welcome!!! You will find a plethora of information from the ladies here on Down Syn. I don't post that much ( I don't have anything to add as my child is stuck in ICU), but I love to learn about everyone's families and children. I'm also new here. I can row in the same boat with you about health issues.....sigh. My baby came home for a 2 week vacation from the hospital after she was born only to end up back in the hospital and has been there a month! She had to have palliative surgery (bidirectional glenn) put in as she has ToF and AV Canal. She was born the 8th of August, her name is Murphy.

Welcome! I'm so glad that you joined us. I'm sorry that your little guy has had so many health issues, but am happy to hear he is doing so well now!

I am grandmother to Olivia, who is 3 years old, and such a joy to our family!

welcome. glad to hear your baby is doing better and is seizure free!!! he is so cute. i wanna love those cheeks of his!!!

Hi Gwen and welcome to Downsyn. I am so glad you have found us because you are definitely not alone here!!! Lots of our kids have health issues, most have had heart surgery and quite a few are or have been tube fed. My little Talitha has been tube fed since birth. We recently went from a nasogastric tube to a g-tube which is so much better. She had terrible gagging problems until she was around 5 months but being on a respirator for 9 days after her heart surgery seemed to get rid of the sensitivity in her throat. We never knew a cause for the gagging.

Sounds like Nicholas is doing great in spite of his issues. Talitha is struggling to get to 13 pounds but I am sure we can get there now we have the g-tube and are pumping her feeds overnight. I am looking forward to seeing lots of pics of Nicholas and getting to know you better.

Welcome! I am glad you found us here. I think you will love all of the information around here, but also the support from others going through similar experiences. I am looking forward to learning more about you and your family.

Kayla

Hello and welcome. Nicholas is such a cutie pie!!!!