5 Months Post Activation

Thursday, September 27th, marked 5 months of activation for Hunter. He has been doing leaps and bounds when it comes to both his receptive and expressive language. Receptive language is the comprehension of language- listening and understanding what is communicated to him. For example, when I tell Hunter to go throw away the plate, he understands and walks to the trash can. And before I can even finish telling Hunter to take his ears off for bath, he is ripping them off of his head. Good thing that's one of the few times he will take them off! He understands when we ask him if he wants to eat because he will sign eat, same for bath, and a number of other things.

Hunter's expressive language, which refers to being able to produce speech and communicate his wants and needs is also progressing rapidly. This weekend he FINALLY started to say "Da" for Daddy instead of just signing Daddy every time I ask him to say it! He repeats almost anything we tell him to say. That doesn't necessarily mean that it sounds exactly as it should, but he's doing it and that's all we are worried about for now!

Here is an updated list words that Hunter says without being prompted:
1. Mama
2. More
3. Da (daddy)
4. Bite
5. Eat
6. Baree- Barney
7. Naynay (banana)
8. Nana
9. Nini
10. Bye bye
11. Hey
12. Hi
13. Ball
14. One
15. Kiki (kick)
16. Teeth
17. Cheese
18. Whooaaa!
19. Uh Oh
20. T! (TV)

He also repeats the following words on a steadily:
Ready
Water
Please

We are still working on walking and balance... For example, today at mass while we were walking the front of the church he learned to walk backwards :) (with my hand of course). And we got a teepee from a friend, so we played in there most of the afternoon. I was on the inside, and Hunter would walk back and forth from Blair to myself, grab onto the material that opens and closes in the front and he was balancing himself enough to turn around and go back. My mom even caught him standing alone for a second, and I did too another time! Baby baby baby steps!

And last but not least, let me give H a shout out because we went for his 18 month checkup last week, and his pediatrician left the room and said she was smiling ear to ear and it warms her heart to see how well he is doing with his ears! For our milestone checklist, I was one proud mama to be able to check yes next to does he say 10 words.

I will end this post with a video of Hunter.... To say the guy LOVES Barney is a massive understatement! Every time he sees a remote he points to the TV and says T! Baree! This is what he does EVERY time Barney comes on. Then he watches himself over and over and just laughs and yells "Whoa!". At the end you can hear him say "Baree" for Barney. We eat, sleep and breathe Barney.

Happy 18 Month Birthday, Hunter

My baby boy's 18 month birthday is today. Kinda crazy, at least I think so.

In a perfect world, my plan was to post an 18 month video. Well that idea came and went, and tonight I just don't have the energy to pull an all nighter. We had AV therapy today in BR, and Hunter was running on 30 minutes sleep. Total. All day. After every activity, he was whining for his mommy. Which is exhausting to be a part of when they are trying to get him to talk at therapy. He did well on the ride there, got a little fussy on the way back, and was in bed for 6pm!

On the way there I spoke with a physical therapist who has her own clinic in Lafayette. We talked about the option of bringing in PT in addition to OT to help with the walking, but I think her bigger concern is the fact that he sits in the W position. It really takes the weight off of his back and she's concerned that he isn't getting the strength he needs on a timely basis just in general, not necessarily to walk. She offered for him to borrow a medical walker that fits him and see if he liked it. He liked it there. He liked it in the driveway, but after a small fall and a papercut size scratch, he was over it for the time being. We were totally SHOUTING "special needs kid" in the driveway with our walker. And it bothered me more than I would have liked for it to. And I feel guilty admitting that. It wasn't enough to make him use it inside, but enough to look around and see if any of our neighbors were watching. But who am I kidding, only 5% of our neighbors actually spend time outside of their houses in the daylight!

With our little cool front here in the south, we got to play outside this week and H was loving it with a few of his favorite things....

Straws!

Bubbles!

Plus lots and lots of balls!

Oh and I didn't get a picture of it, but a lady walking her dog joined the party as well! Happy 18 month birthday my sweet boy... time has really flown!





Usher Syndrome Blog Post

For those of you who are curious how my life is without Facebook, you will be shocked to know that I am surviving, haha! At one point in my life I probably didn’t think I could live without Facebook. How would I know what everyone else was doing? How would I know when my friends get engaged or have babies? I am surviving (although I know it’s only been a little over a week!). I have actually rejoined twitter. And there's a big difference…. Plus I really only follow fun celebs and the Usher Syndrome Coalition and Foundation Fighting Blindness. And I'm sure you've noticed, I am updating the blog more. Sometimes I just like getting things off my chest, and it feels good to just write.

So in the past week, I have done a few other things with my time (besides hanging with the fam :). I made a video for the Usher Syndrome awareness website to get funding from the NIH. I’ve never had to video myself before, so I may look a little awkward at times! And once Mark Dunning, the head of the Usher Coalition, saw my video, he asked if I would do a guest post on the Usher Syndrome blog. I was glad to be asked, but that’s a lot of pressure. It basically tells the story about how Usher Syndrome has been in my life since I was a child. So here is the link to their website with my post, http://ushersyndromeblog.blogspot.com/2012/09/hunters-story.html

He also inserted the video into the post that I made for the funding website. For anyone interested, that website is www.ushersyndrome.net. There are more videos from others on there as well. I appreciate the opportunity to share our story. Although we only found out 4 months ago, it’s something that will be in our lives always and forever. 

Here are a few pictures from the weekend :)

Have a great week everyone!

Part of God's Plan

Not too long ago, I was reading one of my all time favorite blog's by Kelle Hampton, and she had a post from a woman who had emailed her about an accident she was in that left her paralized from the waist down. She had such an interesting view point on what we all hear so often "It's all part of God's plan". For those of you who don't know my mother, I grew up hearing this day.in.and.day.out. :)

"Some people like to tell me that my injury, my paralysis, my illness, they are all a part of a plan, particularly God's plan. That everything in my life has a reason and only He knows why. Well, I tend to find that a ridiculous thing to say. I find it very difficult to believe that hurt, pain, rape, murder, disability, war, and many other awful things are all a part of a plan. As far as I know and understand, God is love. Whenever love is present, so is God. God is inside of us all. When our hearts expand and more love blossoms, we are finding and experiencing God. When something tragic happens instead of being a part of a master plan, I believe it is just one more way we can expand our hearts. We are all a part of the human experience and with this experience comes many, many things we can not control...some good and some bad. Instead of analyzing them and figuring out why they occur, we would be much better off expanding our hearts and realizing all of the other people who share similar circumstances. We would be better off being a little bit easier on people we are frustrated with because who knows what he or she is going through or has been through. We must become more gentle and less tough. You have mastered this idea of opening your heart and sharing love."

If you take anything from this post, I hope you remember each time something bad happens that it is molding you and shaping you into a better and stronger person. I recently found a book in my ottoman coffee table that my mom gave to Blair for Christmas. I hardly even remember him getting it, but on the inside there was a note from her stating, Blair and Elise: I think you would both enjoy this book... So I gave it a shot. The name of it is "The Present", and it's about living in the present, and concetrating on the gift you have been given: the present. Not worrying about things that may have happened in the past, and not worrying about what the future may hold. And I think these things go hand in hand. The book advises that when something tragic happens, find a way to look at what is "right now" in the situation. Right now as in, the present, and right now as in what positive thing can come out of what has just happened. Live life in the present, and don't waste any time because every minute we have here, and every minute we have with our childrent is precious. I find myself rolling my eyes because Hunter wants me ALL the time. He's in a stage where if he's tired or cranky, or just around strangers, he wants to climb my skin. I used to get so frustrated with him, and still do sometimes I will admit. But for the most part, I just mentally prepare myself that when I get home, it's me and him until he goes to bed. Every other night we takes turns, and Blair feeds and bathes him. But when he's cranky, he wants me. And me it is. I've learned many new crockpot recipes due to this stage of his life, and that's one positive thing that has come from the situation! Less time cooking at night and more time cuddling. There are still the occasional eye rolls, and a couple of times where I just leave the room completely because when I'm not in his line of vision, he is perfectly fine with his daddy time.

And Blair, for a great example, lost his father at such a young age. And I don't think he would be the man he is today if he had not lived through such a tragic loss. I don't think he would have the fatherly qualities and all the love in his heart that he does for Hunter, if it hadn't been for what he went through when losing his dad. He doesn't take the time he has with Hunter for granted, he takes it and runs with it. And I love watching their relationship unfold and grow day by day.

It's redundant to some people, but it's true..... this is all part of God's master plan. And it's true, it's all happening for a reason.

Wordless Wednesday

Post AV Therapy today... one tired puppy from working so diligently!