I was against Face book and other social networks. A friend of mine suggest I try it so we can stay connected. So I tried it. I'm glad I did!!! In the last 4 months I have been in contact with 100 + families where FX was part of them in one way or another. Everyone has asked what "My story was". So that is why I decided to do this blog. Nate my 5 year old (fx) is my world. He was my first born, the first one to carry on the name. In my eyes he is perfect in every way! I told my husband when Nate was born that I kissed a frog (husband) I got my prince (Nate).
As I talk to different families that are effected with FX in one way or another, every ones story is different. I'm very blessed that I have this extended family. It's the best "in-laws" anyone can ask for. We all belong to an awesome group where we can ask any question and get feed back without any judgement. At one point or another someone has/had gone thru what I'm going thru. The feedback from other families are great. I find some funny. One person asked the other day about jumping on the bed. I had to laugh. Nate LOVES to jump on the bed. If he could he would do it all day long. As I read the responses, I was amazed how many other children are the same way. It was comforting to know. I hope this make sense.
Nate and I have our good and bad days. Some days he can be the best little boy around. There are days where the meltdowns and the mood swings are crazy. I can tell when he is overwhelmed b/c those are the days he chews on everything he can get his hands on. Cloth books are the best!! I bet we have been thru thousand of book b/c of Nate chewing on them. I try to avoid things/gatherings that are going to overwhelm him.
My other two daughters are to little to understand what is going on. Hannah (3) and Nate are 19 months apart. They have learned alot from each other. Some good and some bad. Alyson is just to little. She thinks the big brother and sister are the funnest around. I will leave u on that. Until the next time I hope everyone has a good day!!!
Saturday, March 26, 2011
Thursday, March 24, 2011
Wow my first blog!! Well here it goes:) My name is Sarah, I've been married for 8 years. My husband Randy and I have 3 wonderful children. Nathaniel is 5, Hannah is 3 and Alyson is 8 months. I wanted to start a blog about our family and the world of Fragile X.
Let me start from the beginning. When Nate was born he has fluid in his ears. By the time he turned 14 months he had 3 double ear infections. He didn't crawl until he was 12 months and delayed in his speech. So we decided to put tubes in his ears. Wow that made some difference. Some speech started to come. I thought wow we should have done this long time ago. He was receiving speech services thru First Steps. Nate's speech was doing better but he was delayed in all other areas.
When Nate turned three he was put into a Developmental preschool. On the first day the teacher noticed him having staring spells. So the next week Nate had a EEG done. That came back that it was abnormal. So off to Riley we go to see a specialist. The Neurologist we was sent to was awesome. She told us that with Nate history we should have him tested for Fragile X. Randy and I decided not to do the test. We never heard of Fragile X. So I come home and did some research. Not sure where to look first I didn't even look.
Well we go back every 6 months to see the Peds Neurologist. She would ask every time about the test. This time when we where there I had concerns about Nate. He was have meltdown after meltdown. His speech was coming but still not using full sentences. I was getting frustrated. I was starting to notice he was not like other 4 year olds. Hell my 2 year old was more advanced then Nate. Finally last October I finally had him tested. Well the test come back that he did have FX and it was Full mutation.
Fragile X syndrome is the most common inherited cause of mental impairment. It is the number one cause of Autism. Full mutation means that his DNA repeats over 200 CGG.
When we got the results I was happy we had answers. Randy was not happy about the results and not happy with me. Since FX inherited that means I am a carrier. I didn't know that b/c I opt out of the testing when I was pregnant.
Since we found out about Nate and Fx. Our world has changed alittle. For me it helps me understand him more. It also means that the girls might be carriers also. I have not tested them. They seem to be fine. So that is our story. I have a habit of rambling. You want to read more about FX please visit http://www.fragilex.org/.
Hope everyone has a great day:)
Let me start from the beginning. When Nate was born he has fluid in his ears. By the time he turned 14 months he had 3 double ear infections. He didn't crawl until he was 12 months and delayed in his speech. So we decided to put tubes in his ears. Wow that made some difference. Some speech started to come. I thought wow we should have done this long time ago. He was receiving speech services thru First Steps. Nate's speech was doing better but he was delayed in all other areas.
When Nate turned three he was put into a Developmental preschool. On the first day the teacher noticed him having staring spells. So the next week Nate had a EEG done. That came back that it was abnormal. So off to Riley we go to see a specialist. The Neurologist we was sent to was awesome. She told us that with Nate history we should have him tested for Fragile X. Randy and I decided not to do the test. We never heard of Fragile X. So I come home and did some research. Not sure where to look first I didn't even look.
Well we go back every 6 months to see the Peds Neurologist. She would ask every time about the test. This time when we where there I had concerns about Nate. He was have meltdown after meltdown. His speech was coming but still not using full sentences. I was getting frustrated. I was starting to notice he was not like other 4 year olds. Hell my 2 year old was more advanced then Nate. Finally last October I finally had him tested. Well the test come back that he did have FX and it was Full mutation.
Fragile X syndrome is the most common inherited cause of mental impairment. It is the number one cause of Autism. Full mutation means that his DNA repeats over 200 CGG.
When we got the results I was happy we had answers. Randy was not happy about the results and not happy with me. Since FX inherited that means I am a carrier. I didn't know that b/c I opt out of the testing when I was pregnant.
Since we found out about Nate and Fx. Our world has changed alittle. For me it helps me understand him more. It also means that the girls might be carriers also. I have not tested them. They seem to be fine. So that is our story. I have a habit of rambling. You want to read more about FX please visit http://www.fragilex.org/.
Hope everyone has a great day:)
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