Hee Hee. Just Us

 This is usually what we start out as: Happy and friendly

Suddenly he decides sensory input is needed. He is going in for the kill

Attack!!! AHHH!!!!

Ha, I'm sure most of you have seen him trying to "eat" me or get my hair. Good times.

Ultrasound update

So I took Isaac in to do the ultrasound on his head today. I don't like going to the hospital. There is so much sadness and tragedy there. I know there is a ton of good, too, though.
The guy doing the ultrasound was wondering why Isaac was even going in. (He isn't the only one). Everything looks good and even though they are not technically supposed to say anything he told me everything looks "normal." In fact he said that Isaac is the most normal person he has seen all day. I found that kind of funny.
I guess I'm beginning to believe what Sister Hillman said to me when she found out Isaac had FXS. "You'll just be glad it's Fragile X and not something else."

I can't believe how well Isaac is doing. Is a beautiful little one year old boy with lots of smiles and energy and I count my blessings every day. I am so happy that he is okay and there is nothing to worry about from the ultrasound.

The OT (not the OC)

We had an Occupational therapist come visit Isaac this past week. He seemed to think that Isaac is high-functioning and doing well. That means he will probably only come a few more times for some sensory ideas and support but that's it.

I don't know whether to be happy about that or not. I think he could benefit from the OT, but I have some exercises up my sleeve to help with Isaac's point, pincer grasp, and other fine motor as well as sensory needs. I'm his best advocate!:)

I guess it's good that he doesn't need the OT...unless he really does. I don't want to wait until he really needs it or until he is delayed before any action is taken, though.

Our Physical therapist (PT) will be leaving us after Isaac begins to walk. I like the support and extra help from the therapists. I hope I do okay when they are gone. Most importantly, I hope that Isaac does okay.

Feeling Extremely Blessed

I just had someone in the ward ask if I wanted to go on a date with Jeremy so that she could watch the kids this weekend. Wow. I'm feeling extrememly blessed.

Not long ago I was frustrated with trying to figure out respite, or watchare for Isaac. I've had three or four  people offer their help in the last week. I didn't ask. They just offered. It means so much to me. This is seriously what my family needs right now.

Thank you!

Old Man's Walker

Isaac's physical therapist came by the other day and gave some new tips for getting Isaac walking.  When he  first brought this into the house I was thinking, "Wow, I'm one of those people." I mean it looks like serious stuff. Luckily, it is just a glorified version of a push toy (one of which you can see in the background). It provides a lot more stability as we try to boost Isaac's confidence. I know he can do it! He has taken one step alone and can stand for a few seconds. He is strong.

This movie is kind of long, but I just wanted to show him in action:)

Me and my family laugh because he looks old already and now he has a walker:)

Yay!

Isaac is now officially on the waiting list for DSPD! Yay, this means hope for respite and other needed care, especially for the future. It may take years for him to get on, but hopefully sooner than later.

Yesterday he also pulled himself up to stand and stayed up for about three seconds by himself. He has taken one step by himself. Walking is coming along:)

What Is Fragile X Syndrome?

I have a lot of new people following my blog, so I thought I'd review what FXS is.

By definition, FXS is the world's most common cause of inherited mental impairment as well as the number one single gene cause of inherited autism.

So, what does that mean? Well, basically, a child with FXS can have delays in any area, including speech, mental, physical, etc. Like autism, there is a spectrum where some are more high functioning than others. Even those who are high functioning can be a challenge.
Some physical characteristics include large ears and a long face.

There is no cure for FXS. They are continually doing research to help those that have FXS. It is still pretty new and we do not know everything about it yet. Some things are up for speculation. However, people have known about FXS for many years. We are just trying to get the word out to stop the question of "Fragile What?"

Carriers can also have effects, such as FXTAS (tremors), FXPOI (Premature ovarian failure), depression, anxiety, etc. Some are worse than others. I'm not sure exactly why.


There is a lot more to Fragile X. If you want to learn more, visit fragilex.org or fraxa.org

I Think I Can!

Isaac can do so many things now. Here are some improvements since last time:
-He can cruise a lot better along furniture and even goes between gaps
-He put three shapes in the shape sorter toy
-He is clapping better and more frequently
-He is now frequently saying "ma-ma"
-He did imitative sounds for ma-ma and da-da. Big deal:)
-Can follow a few directions without gestures
-Imitates some gestures (like clapping)
-Understanding concepts of stacking blocks, throwing the ball, etc.

Right now I am working with him in the following areas:
-Walking
-Pointing to things he wants
-Fine motor skills, like the pincer grasp
-Speech
-etc.

It takes a lot of people to help Isaac get to where he needs to be, but he is doing so well and he catches on quick!

Children

I often worry about Amelia. No she doesn't have special needs. But she has a little brother with special needs. Right now she is only two(almost three) and she knows Isaac gets a lot of attention and babying. I want her to feel special in her own way, too. 

I hope they will be best friends.
When Isaac gets made fun of because someone is inconsiderate.
When someone says "retarded."
When a playmate takes advantage of his disabilities.
When people just don't understand.
I hope that Amelia will stand up for him. Because that's what friends do. That's what big sister's do. Maybe one day she will punch that mean kid in the face on the play ground and teach him a lesson. Ha ha. Maybe not. Okay, I hope not. I'll teach her better, right?;)

I want more children, but I have worries.
Would Isaac get the attention he needs when I do not even feel I can give it to him now?
Will my next child have Fragile X Syndrome? And will I be able to handle it?
Will my next child not have Fragile X and be best friends with Amelia and crowd Isaac out?
Will I go crazy with another whether I have one with or without FXS? :)
I have lots of worries. I don't like worry.

It's interesting having one child with Fragile X and one with out.

I love my children. They are both my little angels. They are my life.

Break Down And Build Up

You know those days when you just break down because your son has special needs? Oh yeah, I do. Most of the time I'm fine, but other days it hits you. For me, I think I cried every day this past week. Let me tell you why (if you want to skip this sob story, skip and read to the end, it's the best;) There's many things, but here is a few.

Isaac is going in for an ultrasound to make sure that his head is growing properly. Thankfully I don't think anything is wrong, but no one likes to do something like this because the Dr. tells them it could be a tumor, cancer, or something awful. I think his head is just finally catching up.

This week we have EHS,EI, OT, PT, and a helper coming to our house. (Early head start, early intervention, occupational therapy, physical therapy, and soon speech therapy.)

The words "borderlined" came up. That means closer to "Delayed." I've been waiting for that word. I've been fighting. But I can only do so much. As Isaac gets older I will strive to do what I can (in a way that does not drive me into exhaustion.)

I sobbed in the arms of my oldest sister who has three children with Fragile X because I want more children and do not know if that will happen. I felt like I was so faithful to have my own children until I actually had one and the reality of it all set it. I've pondered all kinds of options that I have, including adoption. I have some friends that have not even had children, so to even think of being "done" is weird. I have some who have kids Isaac's age and another on the way. I probably would, too...

But then...
you tell people...
you finally just open up...
And those people-friends, family-
...they help you.

They  let you know that 
                                                            you are NOT alone.

I've often said that having a child with special needs has opened up a whole new world to me. Well, part of that is your world. The fact that you may have a child with struggles and you are struggling, too. No need to list them all here. 

There are too many to count.
Because this is life.
We are here to have struggles.
It makes us stronger.

Let me demonstrate this to you with a parable:

There was once two horseman on a journey.
While on this journey they heard a voice tell them
to stop and take some pebbles.
So they got off their horses, grabbed a handful 
of pebbles and went on their way.
When they got to their camp that night 
the same voice said, "If you have done what I
have asked you will be both happy and sorry."
Upon waking the next morning, the two horsemen
found that the pebbles in their pockets had
turned into diamonds and the most precious jewels.
They were happy.
They were sad that they did not obtain more pebbles.

There are many ways to interpret this story, but I view the pebbles as trials. Although we do not always choose our trials, we do pick them up along the way of life. The more that we pick up on this journey of life, the happier we will be when our mortal lives have ended. In fact, we can see the benefits of them in our lives now. Those trials are the jewels that make us sparkle and shine. They make us who and what we are. Through the furnace of affliction.

Like the Provo Tabernacle temple I think of the Relief Society talk about how something we are "burned," sometimes to the ground, to become what Heavenly Father wants us to be. He has a plan for us. He knows us. He knows me and my circumstances and struggles.