Back to the "seizures"

Remember that post a long time ago when I was freaking out about seizures? Well, since then he has had more. The longest one lasted only 10 seconds and there were several after. Needless to say when I told Rachael she freaked. Both her and the KOTM nurse said to take him to the ER.

Long story short, we finally took him in. I was hoping they had a EEG machine to test him. That was my impression, anyway. It turns out that they couldn't just do that test and so I am back to waiting for the pediatric visit I scheduled a few days ago. I should've just stuck with that because we will pay a lot for a doctor to come chat with us, look at Isaac, and say, "looks great!"

There are a few good things that came from this visit, however.
1) Once again I got to see the happiness that Isaac gives to everyone that meets him
2) There was reassurance that he is fine
3) The doctor that saw us lives on Rachael's street and is my cousin Shambrays uncle in law :). It's a small world. It was a tender mercy. Rachael moved to Orem, Isaac was diagnosed with FXS, Mark his physical therapist is in her ward, the ER Dr. (after some hard days we finally went to) is in her ward...it's no coincidence.
4) That same Dr. knows my Pediatrician that I haven't gone to yet. I have been referred to her several times and this just reassured me that she is a good choice now.
5) Recognized prayers are answered and God is aware of us.

Eventually Isaac will most likely go through EEG testing to be sure there is nothing going on as far as seizures go, but right now we are just watching him. Also, online I found what is called benign neonatal sleep myoclonus, which I think may be what we are dealing with here and is no big deal. SO cross your fingers and pray.

Pizza Party

Rachael, Joslin, Amelia, Isaac, and I went to our first official Utah National Fragile X event since finding out that Isaac has FXS. I have been to several before this just for support keeping in mind that this may one day be me. Well, that day has come.

I was so happy that my brother Aaron came with his wife, Chelsea and their daughter Kaiyah. Now I understand better the importance of supporting family members in such things. Aaron is not a carrier or anything, but he just came to support. That means a lot.

Jeremy did not come to this one, but next time he will be there. Marc, Brighton, and Avery went to the ward swimming party because that was what they had in mind and that is where they were going:) (Rachael's family).

I had a great time. Millie played on the slide most of the time. I like that she doesn't care or even know that she is surrounded by children with special needs. I'd like to think that will stay the same, but I know it won't. However, I hope we raise her to love Isaac and others like him.

The pizza was good, but the conversations were definitely better. I had the opportunity of being of help to another carrier. I was surprised. I am always comfortable in the shadow of my sister when it comes to everything Fragile X. However, she doesn't know what it is like to know that you are a carrier before you get married. I was able to give assurance to a woman that may have daughters that are carriers.

I told her about Jeremy.

I will never forget the day that I told Jeremy that I was a carrier of Fragile X Syndrome and that I most likely would not be able to give him the eight children he told me he wanted (chuckle). It wasn't just on a whim either. This is something I knew about since I was 16 and always wondered when and how to tell that certain person from that time forward.

When the day did come, however, I was amazed at Jeremy's response and I have never felt such love and acceptance. It was amazing.

I told the woman that any man that would leave for this reason wasn't worth the effort anyway. (maybe that sounds too harsh:)

Jeremy and I work things out as we go through the challenges.

Some people may think we are crazy for having kids, knowing that I am a carrier of such a syndrome. But this is our life. And I love both of my children.

YAY!!!!

I have happy, happy news! Isaac has rolled over twice from back to belly! This is big. It has given me a new ray of hope. I was starting to get discouraged with his physical therapy. He has been especially stiff lately. We are doing more infant massage to help him out. Technically he arches his back and stiffens to roll over, but it is the start and this will teach his brain that this is something good he should be doing.
Also, he fed himself a graham cracker! I didn't think he could because he hasn't been doing well with those puff things in pieces. He does not have the pincer grasp yet, so

he kind of handles the cracker differently, but I am so proud of him! He loves solid foods:)

When I was 16 years old I found out that I am a carrier of Fragile X Syndrome. I understood what that meant for me in the future as far as being a mother. A part of me thought maybe by that time they would have a cure for FXS with all the research they have been doing.

It is now eight years later and now I have a child with FXS.

Still no cure.

However, there have been some break-throughs on helping to treat different symptoms. One trial did very well and helped many people, but then the funding ran out.

This is hard. People are working so hard out there and then we reach road blocks like this.
Here is my sister's blog with more info and another look:

Medicine trial

We went on a trip to Ferron last week. I know, Ferron. Yup, you read it correctly. In the middle of no where desert. It is surprisingly fun to go there. But that's not really what this post is about. Nope. It's about Isaac-of course. That is why I have this blog.
While we were in Ferron we saw many of Jeremy's family members, including Reef, his cousin's four month old boy. When we got back from the trip I had a conversation with Jeremy that went something to the effect of this:

Jeremy: Did you see Josh's little boy?
Me: Yes...
Jeremy: He is like four months old...(pause)...he can do a lot.
Me: Yes...
Jeremy: Isaac is behind, isn't he?
Me: Yes.  He is behind.

My heart went out to my husband at this point. On this trip he spent more time with the kids than he has in a long time between school and work. He was able to not only interact with Isaac and Amelia but see other children react, too.

Later Jeremy was thinking again.
Jeremy: When did Amelia start to do her scoot to get around?
Me: About 8 months (Isaac is like 7 1/2)
Jeremy: Isaac isn't even close
Me: Yeah. She was also saying dadda at that point, too.

As I was telling our Early Head Start helper about this I began to cry unexpectedly. I couldn't help it. It is so hard finally reaching that point. The point where you begin to see delays. The point where he is no longer on track but where you are struggling with him to keep up. Then it is just trying to get him to do whatever he possibly can do.

He is still doing very well. Everyone I work with in therapy and KOTM (Kids on the Move) tells me so. We are proud of what he is doing. I just have to remember that I cannot compare. Besides, it is like comparing oranges to apples. They are just to very different things. Neither of them is bad, just different.

That reminds me of a story I came upon in my Fragile X newsletter I get.Welcome To Holland. I really like that story. Short, simple, to the point. The truth is no one understands what it is like unless you've been there-to "Holland." But I am so happy for all the support I have. I have SO many people. It's wonderful. Because I have tough days.

So, Isaac is showing some points of delays, but he is still doing well and I am still doing well, too. One
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