Friday, April 10, 2009

Baby J's Therapy-Speech

This week has been a hard one at our house. I have a few things to share, but not sure what all will go into this post.

I missed Alphabitty Moments yesterday, something I look forward to posting every week. I will hopefully catch up next Thursday by doing "G" and "H". I'm sure there were lots of great entries.

Stellan continues to be in the hospital, and their family needs your prayers now as much as ever. There is a chance he will be moved across the US to Boston for further treatment.

Our cat, Ty Dye, went to live at a friend's farm today. He is a sweet kitty and we loved him, but he wasn't an indoor cat (we tried) and it isn't fair to expect all of our neighbors to love our cat as much as we did. Plus there is the whole dogs eating the kitty doodles element...

Baby J had his first official speech therapy today. He is, as they suspected, at a four month old level. I am still learning the ins and outs of who we see when etc. but I will keep you as up to date as I can. At this point speech is where he is the furthest behind of anything, including growth. After doing her formal evaluation, the therapist thinks he may have some hearing difficulties. This was such great news as we were really hoping to get to see one more specialist (we've been getting a bit bored). Sorry. In all seriousness, back when he was born it took him nearly 2 hours to pass his newborn hearing test. This lady thinks he can hear, but is not hearing all the sounds you and I do.

How on EARTH do you have a speech problem/qualify for a therapist at his age??? I know, sounds odd. Today's session was one of the most interesting for me. I had many students when I taught who needed speech through the school system (no offense to anyone who works in that area, but it is SADLY lacking in many of the schools I worked glad Baby J is getting it before he hits school age). I have seen speech therapy in action and even had to do some research on it in college for my childhood development classes. Basically she is not only listening to what sounds he makes and how he makes them, she is looking for eye contact, social skills, eating issues, and his hearing. She did a full examination of his mouth too. I know you will all be as shocked as I was to find out he has low muscle tone in his lips and mouth and that I have exercises to do with his mouth now too. *sigh*

Back awhile ago, before 90% of you even read my blog :o) I had mentioned that Baby J often dislikes eye contact, or prolonged eye contact with people. Although it has gotten better, the therapist noticed it quickly today...we had mentioned it to our pediatrician months ago and were told we were nuts, and that he was fine. We have some games to help with that, along with recognizing his own name, and more mature social things. Don't get me wrong, he is social. Baby J is a very social little guy, but he has things that need to be addressed in order to get things like his speech back on track.

He has an IFSP meeting next...I don't know what that stands for and don't feel like looking it up right now, but basically, for those of you who are familiar with it, it is a baby "IEP" (Individual Education Plan). It may be Individual Family Service Plan...Deb you may know...
Anyway, it just is our formal plan of action for him to continue to recieve services. We have seen such big improvements in such a short amount of time I do not forsee him needing services past maybe even this summer. Wouldn't that be nice? Not that I don't appreciate what they are doing, I do. I am just seeing great stuff in him.

I feel like I am being a little sarcastic tonight about all of this, but we've had people think we are going a bit overboard having him in all of these "services". Trust me, we don't dream this stuff up. I know that there is something about everyone that can be "fixed" but these people are not seeing a few items that can be tweeked, they are seeing a few months delay in many areas...and they are individuals coming out at different times-lots of new eyes seeing things without us even mentioning them that we have been concerned about. GOOD NEWS is that they are all pretty sure that he will catch up sufficiently! But belive me, we are not dreaming this stuff up, even if you don't see it in him when you are around us. It is not fun to have all of these appointments, and let me tell you I have better things more fun things to do with my time than 81 minutes of OT/PT plus 6-8 bottles a day with special positioning afterwards, along with new speech items which I haven't even begun to figure out how much time they will take. Oh, and did I mention that I pump 3 times a day for at least 30 minutes each time? PLEASE don't tell me I've made all this up.

Again I am sorry if tonight's post is a little on the sad/sarcastic side. There have been so many things hit here in the past few months, and they are beginning to take their toll on our family and our marriage. Thank you for all of your prayers, we appreciate it and continue to need them as we begin to try to get back to normal. We do not "need" anything at this time, just please be patient if we don't answer an e-mail, return a phone call, or seem kinda out of it when you see us in person or don't respond like we might normally. I hate when people tell you they are "fine" when you ask how they are, if they truly are not, but "fine" has become my answer because I don't want to be repeating what I've just typed over and over and I don't truly think most people want to hear it all over and over. Somedays I feel like sharing more than others. It isn't personal, it is just the reality of where we are at this point. We love you all and are so thankful for you.

I would like to mention that it is Good Friday, and that without Jesus and His sacrifice for us, this life would not be worth living. My belief in God gets me through each and every day. I know what I wrote above this may not be testimony to that, but it is true. I guess I figure you all can see me for who I am...imperfect. I have posted before about my faith in Jesus, and what it means to me, but God didn't promise us a happy life. He promised us an abundant life. He promised to get us through the ups and downs. Yes, all this stuff is a drag. I would much rather have fed Baby J some plain ravioli and green beans instead of another bottle of PediaSure at dinner. However, God gave me a very special little boy to take care of and He has been using this situation to strengthen my faith in Him. Yes, our family is having a hard time. Yes, our marriage is having a rough time. But everyone goes through rough times.

My mom sent me an e-mail with a video the other day. I finally got the chance to watch it tonight. Our computer is really on the fritz, and it is making blogging/email/facebook difficult, bear with me! Anyway, please take a minute (or like 4:53) to watch it. If it doesn't post, go to: IS coming back. Are you ready? I sure am!


MelArcile said...

Hang in there cuz. You are a great mom and I know you are doing EVERYTHING you can for your family. Can't wait to see you guys in a week!

nancy said...

We love you guys!

Megan said...

I hope things get back to normal for you guys very soon. It sure has been alot to deal with all at once. I'm praying.

Beth Irish said...

Love you guys. Sending a big hug to all 4 of you. Wish I could do more, but be assured I am praying several times a day. AB

Deb said...

Yes- you got IFSP right. :) And the audiologists at Children's are very nice too- if you get to go them.
We'll definitely be praying for you guys- ALL of you! We've been there, so we totally understand. Hope you get to enjoy your Easter weekend!