Isaac is showing more and more progress towards walking and I couldn't be happier! We are trying to work with him, walking with him everywhere we go. Sometimes it is more convenient just to pick him up and go where I need to, but I try to be diligent because I know the harder I work, the better off he will be. (No pressure!)
This little guy is power.
I am so blessed! His smile brightens my day, not to mention everyone else's. I hope that smile NEVER fades. I still cannot go anywhere without comments from others. Love it.

I know this blog is sometimes a rant BUT I'm trying to be more grateful. I had an epiphany the other day. I was thinking of embarrassment, fear, pity, etc. that sometimes enters my life and how it can be wiped out by GRATITUDE.

Besides, it could always be worse ha ha.

Isaac wants to say something...

xs bn  hjgg fhj.vkbvkgbhm vhrthfnbgngyu

Yup, just like his mama.

Unexpected Things

As Isaac gets older I run into unexpected things-some good, some not so good.

1) I was at the doctor the other day and they were weighing him on the scale. Obviously he didn't feel good, so she was trying other ways to weigh him besides laying down. She told me he could stand up if that would be easier.

"He can't stand."

I just left it at that.

2) I was at my brother's house tonight. All of the normal things don't seem so normal when you are somewhere else. Food everywhere. He throws up from gagging. Very active.
Oh yeah, I guess I'm just used to it. It's hard not to get embarrassed sometimes or want to cry. Jeremy is good at laughing things off, but sometimes I don't want to laugh-not yet.:)

3) The physical therapist came over the other day. He has been planning on Isaac walking for a while now. I was starting to get discouraged with the progress, but then Mark, the PT said he is doing so well. Isaac showed off for him with skills I didn't know he had! Must be the PT's new toys. :)

4) The occupational therapist is staying with us longer than I thought. I am surprised and glad because I thought he was just going to come a few times because I wanted it. Last time he brought many different sensory toys and I was happy for another helper on our behalf.

5) We try not to make excuses for him or coddle him, but he still drinks lots of milk and it has to be warm. Sometimes we do things just to stay sane and I wonder how long it will last! Sometimes Jeremy and I wonder what we can expect from him, ya know? I still expect the best.

It's Been One Year

Yesterday we put our Christmas tree!

 I was so excited! I can't wait to give gifts later this month:) What a wonderful month!

The truth being, however, December last year was extremely hard for my whole family.

This is what started me thinking about it all. Isaac's little foot print.
About this time last year Megan Dillworth, Natasha Robbenalt, and I got together with our sweet little ones to do Christmas ornaments. We made impressions with little fingers and little toes in the white clay to form lasting memories.

It just so happens that on this day while I was at Sister Dillworth's I got a phone call from Dr. Hoggard. I didn't want to answer, but I did. I had to. I assumed it was the news I was waiting for after four weeks.
I don't remember exactly what he said, but I got it and I wanted to hang up immediately. He gave "condolences" in a way.
"Your son has Fragile X Syndrome."
That's not what I wanted to hear! I wanted to hear, "Congratulations! You have another healthy, normal baby!"

That was the day our lives changed forever.

I felt ridiculous crying (heaving sobs) when Megan and Natasha had no idea what was going on. I tried to buck up and be happy, at least for a short while. I was happy when it was time to go. I wasn't going to open up about that can of worms just yet. I was too devastated to speak.

But then I had to call all of my family members. I had to tell them what everyone feared, what Rachael already knew. I was embarrassed, heart broken, afraid, and so much more.

I'll never forget in despair that I almost thought the atonement could not reach me down there. But Jeremy reminded me that he is still our son. Nothing changed from before we knew Isaac had FXS to after we knew he did. "He is still our son. Nothing has changed."

He was right. And now we don't think about what it was like before because it is all meshed into what is now. Thinking back, I know God prepared me in hundreds of ways for this. Others are not as lucky as me to have a pioneer like my sister to do the hardest work. But it is still hard.

But at this time as my family remembers the day we found out another in our family has FXS, that my brother had his precious still-born son, and when dear Grandma Ruby, my last grandparent, passed away, it is also a time to remember all the tender mercies and love. And I remember, that, as Elder Holland has stated, that you are never so low, so deep, that the light of the atonement cannot shine down upon you.

I'm thankful for my Heavenly Father, Savior, Family, and friends that help me through the hard times and help me realize that life is so wonderful and I am deeply blessed.

Merry Christmas!

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.

Paper Work

Having a child with special needs requires a lot of paperwork. I bet you never really thought about that before.

Isaac is now in what is called Friday's Kids with Kids On The Move. That is where he gets his early intervention help, including physical therapy. He will now be getting speech therapy and occupational therapy within the next month or so.

It's starting. I feel like I see him falling behind. No one else sees it really. I'm the paranoid mother, ya know. Obsessed with development.

Anyway, there was a bit of paperwork involved, a phone call or two and an hour meeting to get him into the "club." Now Jeremy and I get respite Friday nights from 6:30-9:30 pm. However, we are on the "on call" list, so we never know until 6:30 if we will get in. We also have to find a babysitter for Amelia or take her with us at that time. Kinda crazy. I'm sure we will be super grateful for it when he is older. Hopefully one day we will get off the on-call list and on to the regular list.

During this time I have also been trying to get everything together for the Department of Services For People with Disabilities. AKA DSPD. Now that is some paper work. Anything you could think of, they want it. And it will only get me on the waiting list. My niece just got in. She is eight years old. My other family members with FXS have not been accepted. It's gonna be a long road.

Well, Isaac is doing well. Here are some things he is improving on:
-Pulling up to stand
-cruising along on the couch, going between gaps
-Says Da-da all the time and will say ma-ma once in a while now
-Sleeping better, but still have rough spots
-Started clapping finally! It was totally legit!
-Finally getting to the pincer grasp stage
-Understands "No-no"and "Come here"
-More cause and effect understanding
-Put three rings (at different time) on one of those pole toys
-Can do two of the five things to make the animals pop up from his toy (pull and push)
-There are more little things, but those are the most prominent.


Here are some concerns
-Hair pulling
-Biting
-Gagging/throw-up
-Not knowing when he is full?
-Hyposensory
-I wonder if he is beginning to fall a bit behind with cognitive areas and so forth, such as his babble, identifying objects if you say, "Where is your ball?", imitative gestures, and more.
-Attachment to bottle! (that can be for any kid)

He is doing very well, though. I just feel we have to be on top of things, not wait till he is delayed before we do anything about it.

The FXAU Parade Of Pumpkins

The Parade of Pumpkins was way bigger this year than last year. We don't know if we will do it again because it is so much work for just our family. A lot of others helped, but as far as getting all the details, etc. WOW, lots of work. I was over the media and got Rachael and I an interview at the Spanish Fork 17. BYU newspaper also wrote an article about us. Joel had ties to the Deseret News and that was great, too. We had many friends and family, posters, signs of all kinds, and more to help spread the word. We wanted a bigger turn out, but there were tons more people this year. If we do it again I think it will continue to get bigger and grow in popularity.

The larger displays sold for a hundred dollars or more. Some of the single pumpkins were as little as a dollar. The bids went great. Face painting brought in a lot of donations, too. Shambray and I did this for about two and a half hours. I was nervous at first, but it was a lot of fun:) Stephanie Goodman came to help while her husband played in the band. There were so many that came from our ward to support, lots of pumpkin donations came from our ward as well. It was just wonderful. I am so grateful for all those that came! It means so much. I even saw an old co-worker that I have not seen in years come to support me.

It's things like this that make you feel like you are part of something so much bigger. You realize how many people are behind you and buoying you up in your trials and even your good times.

Daddy and Me. He is always supporting the cause as a carrier of FXS. He even went to
Advocacy Day in Washington DC once!

This is a wreath I made

Lynn, Rachael's mother-in-law made these hot pads! I want one:)

Another amazing pumpkin carving by Aaron Reimschiissel, my brother

Coolest haunted gingerbread house EVER. Went for 90 or more.

That's my frame in the back

What I wrote for my Despicable Me display

This was a hit. It went for over forty dollars

Jeremy made a pumpkin, too. I wrote this for his caption

Jeremy's pumpkin

Julie Hillman in my ward put this together with her class and daughter. So awesome. It won the trophy of Best Display. Thank you! She dedicated it to my little Isaac. Totally melted my heart.

Setting things up Friday morning

Some donated trees, so we spooked them up

Mille wanted to help, too. She got to wear my t-shirt while we set everything up all day Friday. It was a lot of work! I'm glad it's done:)

Grow Old Along With Me

Yesterday I saw a glimpse into what may be my future. I watched an old couple, probably in their late sixties or maybe even seventies. Along side them was a man in his thirties, I would think. I noticed he had special needs, though "high functioning," as everyone says these days.

These were his parents. Never to be empty-nesters. Never to see their child get married, have a successful career, drive, be independent. They all grow old together.

I always joke that we might as well have another with FXS and make it a party. Growing old together. It reminds me of one of my favorite songs, "Grow Old Along With Me" by John Lennon. It talks about a husband and wife and it is very tender, but this last line can pertain to Me, Jeremy, and Isaac.

Grow old along with me 
Whatever fate decrees 
We will see it through 
For our love is true 

So, come what may in this journey, Jeremy and I might always have our little buddy with us for company. As we see Amelia grow old and become independent,  hopefully to get married and have children of her own. As we go on a mission altogether, wherever it may be. 


I hope that Isaac will be taken care of when I am gone.

Rejoice In The Now

Don't mind my face. Isaac is cute:)


So...we had Isaac's IFSP (Individual Family Service Plan) today. The words, "He isn't delayed anywhere" (meaning anywhere on the spectrum: physically, cognitive, etc.). Wait. What? "He must be high-functioning." Am I hearing you right? "Even cognitively..." Okay, okay, this is a miracle. My son has FRAGILE X SYNDROME. He has SPECIAL NEEDS. How is this possible? Did I miss something? Why? Should I feel guilty because he is doing so well? Mostly I just want to throw a party, but it seems too good to be true. Do I just wait and see? Will this change?

(Flashback:) After I told my ward that my son was diagnosed with FXS, a woman that works with special needs children said that, although it may sound strange, especially in this grieving process (of just finding out the news), "you'll be glad it is Fragile X Syndrome and not something else." The more I get immersed in the world of special needs the more I see that I AM  glad. The thing its, just like autism, FXS has a wide spectrum. If you are on the lowest end of functionality, it is one of the harder things, I would think.

Here is the thing, though, Fragile X Carriers have their own issues, so taking care of special needs children on top of that is tough.

But really, when I look at Isaac I have no regrets. Never. Did I know what I was getting into when I was having my own children, knowing that I am a carrier of FXS. NO. But, I love this kid to pieces! And so does everyone that meets him. That smile is amazing and I think he'll have it forever. It's a gift. It changes people's lives. I am so glad we chose to have our own children. It's amazing.

Whatever happens I want to rejoice in the now. I don't want to "just wait" for the worst and hardest to happen. I am happy now. He is doing awesome now. I will continually hope and dream for his future, just as I do for Amelia. Glimpses of marriage, mission, even riding a bike come into view when I hear the above statements of "He isn't delayed."

Isaac is crawling smoothly and pulling himself up to standing. Just update.

Crawling

Isaac is officially crawling and it catches me off guard sometimes! I am so stinkin' excited and happy. The blessings he has received are coming to pass. He is overcoming many challenges and I am so proud of him. Every step he takes I am just blown away. I rejoice in every milestone he reaches. His accomplishments and successes are mine also.
Good job, Isaac! Keep goin' strong!

What a cutey pants!

Green Reunion

A few weekends back we had the first ever Green reunion. My Grandma Vivian Reimschiisel was originally a Green.

 It all started back when my sister went to Washington DC to advocate for Fragile X. She stayed with some relatives. Tiffany, our cousin, was there, too. Long story short we ended up following the gene pool back a few generations to discover that this (the Greens) may be where it is coming from. We all felt that my grandma and her siblings (the only one living is Jess Green) wanted this reunion to happen. It was an amazing experience and there were many children with Fragile X Syndrome there. Many have not been diagnosed. It was crazy.
Having a genetic syndrome in your line can actually bring you all together. The reason this reunion had never happened was because of hard feelings, past wrongs, and more. But that day everything went well. People were talking together even though before they hated each other and hadn't talked for years.

It was amazing to see the resemblance of Jess's sons to my great grandpa green. Almost identical. I loved looking at old pictures and books people had brought. I love family history. My heart is definitely turning to my fathers as Elijah foretold.

I just cannot explain in words what I felt that day. It was amazing and I am so grateful for family unity. Reunions are awesome, family is forever, and Fragile X has brought us all together.

More Good Things

Isaac is doing so well! He feeds himself crackers and small foods like a champ. He is refining his pincer skills as well. I still wonder if we need an Occupational Therapist. He can get up better from his back to sitting and is going from all fours to sitting more. Now he has started to pull himself up to kneeling position. Awesome. He is starting to eat more and more regular foods. He loves them! It makes more work and mess for me, but it is wonderful!
Through all of his accomplishments I have to remember to make a big deal when Amelia does something good, too. Often I think we make a huge deal when Isaac does something good, but Amelia needs just as much excitement and credit. She is also doing amazing things. Her puzzle, matching, and other skills are great. She draws with such ability, sings songs, understands so much, etc.
I am so blessed to have these two amazing children!

Guess what Isaac has been up do lately? He shakes his head no! And when he sees us do it he does it, too. This is awesome! He is playing a game, he is doing what we do, he is physically doing it, his mental power is workin', it's cool:) Can you tell I'm excited? He has also been getting up on all fours from his tummy regularly, sitting up from his laying on his back, and he has even got into sitting position from all fours.

Fragile X Carrier-just puttin' this out there

I like to tell people that Fragile X Carriers are just normal people. Well, I don't know what normal is. All I know is that I am lucky to have Jeremy because he loves me no matter what. I don't think he knew what was coming when I told him almost four years ago that I was a carrier.

There is good and bad about his fact. Many people have genetic issues and issues of all kinds. Knowing that I am a carrier provides me with knowledge and, therefore, power. I know what kinds of things I can expect. With my sister leading the way and we being similar, I know even more. BUT, this also means that I have to admit that there are issues with being a carrier.

There is a study being done that those with FXS who have seizures have mothers that have thyroid problems. Well, I don't know if those things have been seizures, but I still want to have Isaac tested. For this and other reason I got my thyroid tested and I am hypo thyroid. Luckily it isn't too bad BUT I do have to take something to stabilize things. Hopefully this will help me feel better. Ya know, less angry, depressed, anxious, blah blah.

I deal with a lot of anxiety but I have been able to overcome a lot over the years before I realized this. That is another can of worms, or beans, or whatever you wanna call it. But hopefully no one will judge me or think of me different. I'm still me just like Isaac is still my son:)

There are many other related things that I have no idea about. I'm just taking things one day at a time and, like Isaac, I don't want Fragile X to define me. I still have power over my body. I still pray for help to overcome weaknesses, I still feel the Lord helping me overcome things, etc. etc. There is a balance in all things.

By the way, yesterday was Fragile X Awareness Day! Ha, at least for everyone else. Every day is Fragile X Awareness Day around here;)

Getting Some Help

My sister, Rachael gets a lot of help from her ward and suggested that I do the same. It felt kind of weird at first. After all, she has three older kids with FXS and I only have my one 8 month old. BUT, I was getting a bit overwhelmed trying to do everything I should with Isaac. Long story short I have about eight young women on board to help me out. One of them comes almost every Monday and Friday for a half hour. Others come whenever.

I put together a movie and sent out a calendar sign up sheet. They sign up for a time, watch the movie, and come help. It's been good and allows me to do other needed things while resting assured that my child is getting help and attention. Amelia just plays along in her room so that's nice.
We are kind of at a stand still right now, though, because Isaac sleeps at ten and again at one until about four. It's hard to coordinate times. It is also sometimes hard to have the YW do the physical therapy with them. However, it has been a good experience.

It has been a learning experience as well. I don't know what I'm doing and have made mistakes that I'm sure the parents weren't happy about (like not being there when a girl had scheduled to be at my house!). All in all I think it will help me and Isaac and my family, especially for the future.

Isaac is doing well. We will be working on crawling next month and his physical therapist is very pleased. EI is now working more with cognitive development. We are working with pre-communication, games, acknowledgement, and more. I am so proud of my little buddy!

Also, I just got new visiting teachers. I guess for the first time in my life I need the stalwart ones (ya know, the ones that come every month, pray with you, etc :) Usually I'm okay and no one worries about me. I rarely get visit taught. So this is new ha ha I like it. They will watch Millie when people come to work with Isaac. They may also help with his therapy as well.

SUCCESS!

This is Isaac in his Sunday best...sportin' the shoes.

I just have to share some happy things!

These are some of the things Isaac is doing now:
* Turning a board book page. Love it!
* Rolling around like crazy, both ways with no stiffening
* He can sit straight up when you hold his legs down. So funny!
* He will often walk with you when you hold his hands and sometimes it isn't stiff:)
* He says "ya-ya" and I've heard a few "da-das" as well. He even makes "razz" sounds once in a while. This makes me extra happy because I'm more worried about his mental developmen.
* The EI (Early Intervention) specialist said the pincer grasp comes later. (so he isn't behind!) He is doing the radial digital grasp right now. This is better than fisting things, but not quite a pincer. 
* Still a very social little guy
* He rolls to his side and props up on his elbow. With a little help he pushes off and sits up.
* He is getting better at being on all fours, pushing off, etc. A work in progess, but progress non the less!

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
   step
      at
        a
          time

Early Intervention came today. We have a new person coming. Her name is Erin. Lauren from Early Head Start came later. I was informed that EI will now be coming two times a month for thirty minutes. That  means Isaac needs more help. That also means we are getting him the help he needs to further succeed.

I took for granted to milestones Amelia hit. They just came naturally. I have to fight to get and literally teach Isaac every new thing lately. However, it is really neat to see when things start to come together and watch him do things for himself after being taught over and over. Things that come naturally to children his age are something we all must work hard for and hope we can keep up.

They said that around eight months is when they usually start seeing delays. I have to admit that at times my hope seems very little.I've come upon other stories of children Isaac;s age doing well-right on track, but it doesn't stay that way. It was kind of a slap in the face to be honest.I brace myself for that.

Sometimes I get scared. It is said that if you are prepared you should not fear, but I don't know what to do to prepare except to pray my heart out every night and ask for help and a blessing for Isaac.

When I first found out that Isaac had Fragile X I knew everything to do. Everything was clear. I called KOTM among other places. It wasn't as easy as I thought. You have to fight and bug people to get help for your child. And then when you do get help it requires much more on your part than my naive mind first thought.

People don't just come to your house and work with your child every day and everything is fine. Of course not. They come and it is draining and then you expected to work with them every day. If I let a day go by without doing something to work with his development I feel I have failed. I feel guilty. I feel like a bad mother.

But I can only do so much. I have to live. I have to do the dishes and clean my house. I have another daughter that begs for my love and attention constantly. I have a husband. I have things I enjoy doing. I even have this blog I don't have time for. I can't spend every waking moment working on his development. Sometimes I go crazy constantly thinking of development, milestones, etc. etc.

I have a chart that helps me track how much time I spend with each child and their goals. At the end of the week I see that I don't spend as much time as I should. But I hate that I feel like I can't just enjoy time with my kids. I am constantly having to look at the clock to see how much time we spent doing this or that. And if we just have fun I feel like we need to be doing other things. It's a constant battle.

I am learning to balance things, stay sane, stay happy. I decided that Isaac is not my battle. He is my angel. Maybe it isn't even Fragile X. I think it is just this mental battle of imperfection we face very day of our lives. And the worry of what others may think or do about those imperfections.It's the battle of learning what truly matters most in this life and prioritizing our time accordingly. It is the battle to find joy in the journey of life. It isn't about getting to the end of the song. It is about enjoying every beat, harmonious chord, and favorite line along the way.

And so, I will enjoy the smiles, how everyone loves him, how those smiles make others smile, the fact that I have two wonderful angels in my home, the fact that I am being molded and perfected in this life, and holding that sleeping baby in my arms only to hear him laugh in his sleep one more time before bed.

A JOY

So I thought I would post something positive!:)
I love our children so much. Isaac has opened up to me a whole new world! So many people open up to me in ways I never would have experienced before. I am amazed at how many people have family members with disabilities. There is a reason why there are so many in the world today. I wonder if it is partly because the world is so wicked and God wants to protect his children and/or if we need them here to help us.
Isaac brings so much joy to everyone that meets him. His smile is so contagious and same with his happiness. It is so fun to have him around. Everyone just loves him. He is so cute! How could you not love him? (I know-I AM his mother, ya know).
I feel blessed to have such sweet children in my home. They can be so hard sometimes, but it is wonderful. 

Physical Therapy...Among Other Things

I have discovered that there is nothing that can describe, nor explain what it is like to have a child with special needs. One aspect that I am gong through right now is getting him help.

At first I thought that everything would be okay because I was going to get him into Early Intervention, DSPD, etc. etc. First of all, it was harder than I thought and I felt like I had to fight to get anywhere. I didn't get far with DSPD because Isaac is still too little.

I have since discovered that mainly it is up to me. As if I don't have enough stress and things to worry about! It is hard tracking how much you work with your child on his development when a day goes by and you realize you have done nothing-specifically, at least.  Like today. I didn't work with him on his knees. I didn't do this and that. Then the guilt sets in.

(But, I know I need to look at the positive. For example, we worked on sitting up, playing games, and interacting with others. "Drop of Awesomeness" for ya.)

I can't help but feel that if he fails, I fail with him, if he succeeds, I succeed with him. I guess that goes for any child, but the weight feels so much greater in this situation.


The emotional stress of everything alone leaves me ragged some days. Not to mention that Early Head Start comes once a week for an hour and a half, Early Intervention comes once a month for forty five minutes, Physical Therapy comes once a month for forty five minutes, and they also have other playgroups and such which I never make it too.

I have gone to an infant massage class to help with Isaac's stiffness, though. It was good. I was surprised at how well Amelia did in the sibling day care at that time. Again, I am so proud of her.

Occupational Therapy may not be so far in the future as well. I don't know if I can handle all of it, but I know that I have to do everything I can for him. It's just have to. And so I guess I see my life changing. Once in a while a day goes by that I don't think about Fragile X. Once in a while...

Amelia

Amelia is one special girl. This isn't the life I had always wished to give her, but I'd say it is still a good life. I can't imagine growing up with a brother who has Fragile X Syndrome. I can't imagine the things she will face. Jeremy and I know that she is a very special girl, a special spirit sent to our home. What a blessing she is. My sister often tells me how lucky I am that I have one of my children that will carry on a conversation with me, lead the way for my son, and be there for support.
I hope that she will be Isaac's protector and friend. I feel she is. I hope that she will continue loving him and seeing him like any other little brother. I have no idea what is in store for her in the future, except for the fact that it is a bright future full of potential. I am so thankful I have my little Amelia. I know she is my little angel. I don't know what I would do without her.

Okay, I have calmed down since my last post. I am still worried, however, considering many children with Fragile X have seizures. It's just scary, ya know? I feel like every time something isn't right I have to ask myself if it is related to the syndrome, or just normal stuff.

For example, lately I have had some pretty sleepless nights. My sister, Rachael, who has three kids with FXS said that at about six months she noticed sleep declining. She started giving her kids Melatonin (I think) to help her kids sleep.

Now I have to think Well, Amelia was the worst sleeper ever. I survived and now she is a champ. So...is it something I have to treat him for or is it because around this time I always have a hard time keeping my babies full (I won't go into that ;). Too many long naps in the day? Who knows.

Technically it is deemed normal at this age. Okay. So I wait it out and see. I don't ever want to medicate my child unless I have to and see it fully necessary.

The thing I see with Fragile X is that there are many things that happen to them that happen to every child: hyper activity, anxiety, not wanting to sleep, etc. but it is intensified. So I guess I will take it all one step at a time.
Every child is different, even every child with FXS.

(PS pictures and more info to come. Blogger has never been my friend when it comes to uploading anything. Lame sauce.)

Today was a roller coaster. I went way up only to come crashing down.

For the first time a physical therapist from Kids On The Move came to our home to work with Isaac. 

He told some good and bad news: He will be coming to our home once a month from now on.

This is good news because that means Isaac is doing well, which he said. Isaac is even sitting up like a pro. However, it is bad news because we only get to see him once a month and because we have to see him at all. 

He taught me four different things I could do with Isaac to help:

1   *Don’t use the Boppy pillow to help him sit up anymore. Work with him on sitting alone with toys.

2    *  Have him sit on my knees and tilt him side to side, then let him use his abs to clench back to position.

3      *Go from sitting to kneeling and back again with the help of a couch cushion.

)      *Rolling from back to tummy

    *Don't use bouncer much

I had to call Rachael because I was ecstatic. I am getting help for my son! Useful help! I can help him! I have even more hope! We rejoiced together.

Then I went to put Isaac to sleep. It had been two hours since his last feeding, so I thought I would feed him before he went down. That means more nap time, right?

Then it happened.

He began to do small little convulsion-like movements while falling asleep. He has done this twice before while falling asleep while nursing. Before, however, it was more like twitches and I just figured it was because he was falling asleep. Jeremy does the same thing. It has worried me, though. This time was different and I tried not to panic. 

After he was asleep I got online. Suddenly my feelings of knowing what I’m doing, success, hope, and all that just deflated. No, they popped.  After looking a few things up and reading a bit I looked up a pediatric neurologist under my insurance provider and wrote down the number. 

I kept telling myself it was okay. I’m okay. Then I just cried a lot. I thought, “But, this isn’t supposed to happen. Rachael hasn’t gone through this. (Maybe a little with her son) That means it’s not supposed to happen. No one has paved the way. I don’t know about this. I don’t know where to turn.”

Then I began to think again on the financial side of it all. Will we make it? Will Jeremy be able to finish school if this is something that needs immediate action?

Of course I’m praying through all of this. Now I’m taking it one step at a time. Looking at possibilities. Trusting in the Lord with all my heart and leaning not to my own understanding (which is very little). I wonder what life, and Fragile X, has in store for us next.