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 in...so 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: http://www.billygraham.org/TV_Index.asp?l=http://link.brightcove.com/services/link/bcpid5725652001/bclid14644269001/bctid16455114001Jesus IS coming back. Are you ready? I sure am!

More Good News

This boy weighed in at 16 lbs 7 oz at the doctor tonight. WAAHHHOOOOOOO! He wasn't going to get weighed until tomorrow morning but #1 took him to our doctor tonight because he has an awful blistering diaper rash that is starting to ooze. We don't experience diaper rashes much with using cloth diapers and this one is a doozy. The PediaSure gives him really yucky diapers, and he's had diarrhea today. Dr. B (just our regular doctor, not the GI) said to let him know if it continues, but it isn't affecting his weight and he is well hydrated (He should be, he's getting close to 1,000 calories a day in liquid).
When the therapist called back this afternoon to schedule his next appointment she suggested we contact our physician (she saw both his BM and rash today and was concerned too).

THANK YOU for your prayers and we hope hope hope to be bringing more good news every time he is checked out.

I ♥ Faces

This week's theme is "My Friend & I"* This is my picture, and I hope you like it...I do :o) If you would like to participate, and I think you should, please click the button above or below for complete rules, regulations, and fun!

Baby J and Mother Hen posing together on a warm spring day in March.

*grammatical error is not mine...

Somehow my post about Baby J's therapy session today ended up BEFORE this one...I wanted it to publish after....so just scroll down or go to "older posts" to see it...sorry...

Baby J's Therapy Session #2

You know a therapy session goes well I guess when this ^ is the result! Baby J was knocked out by the time his physical therapist was done with him.

Great news! He is 5.5 moving to 6 months in large motor skills. He appears 'normal' to people, not only because of his size (tomorrow we weigh him again, and tust me, this boy is putting on pounds ounces!) but also because he has splintered skills. He has great supine skills and is wonderful with his legs he puts on a great show. However, the skills needed to crawl*/creep*/pull up still need to be worked on. His upper body and oblique muscles are pretty weak.

After a few more days of him exploring rolling over on his own, I have some exercizes to do with him to prepare him to crawl! Can you imagine? He should be crawling* very shortly.

The PT described Baby J to a T today when she explained babies with lower muscle tone. He does not have low muscle tone, just lower than it should be...confusing, I know. Low tone babies are like jell-o, and that is not him. She described them as extremely laid back and sleeping LOTS in the first few weeks. Baby J slept the first 5 weeks, up to 22.5 hours A DAY. We joked that we didn't meet him until almost 2 months.

These babies are pretty happy to sit back and do nothing...but get really irritated if made to do things, go places, move. Um, yep. Baby J used to scream his head off for diaper changes, clothes changes, and car rides. If he was held or lying comfortably, no sweat. We have pictures of him screaming through almost every event for a few months. This does improve (as we've seen with him) but they can still be pretty apathetic (we can go in and Baby J is awake in his crib staring at the ceiling or crib slats when we think he has been sleeping. We never know when he wakes up and unless he sees us or gets hungry he will lay there indefinatly).

They hate being on their tummies. They like everything done for them. Meet Baby J.

However, he is coming along very nicely and we are seeing excellent progress already. We may just have to insist that he do things a certain way for...well...his entire childhood. Baby J being "happy" is certainly not a goal of his PT at this point.

If you coupld pray for his comfort in the next couple of days, we would appreciate it. His diapers are really gross/stinky/irritating while on the PediaSure and this morning he woke up screaming in pain. He has a rash over almost his entire diaper area because he had a BM in the night and it burned him. It may also have something to do with the fact that he CUT HIS THIRD TOOTH today. Snug had diaper rashes when he cut his molars (Baby J did not cut those, it is a top front tooth).

Thanks for praying and reading. We are doing really well. :o)

*in PT terms, crawling is pulling yourself along the floor, not necessarily on hands and knees...creeping is up on hands and knees moving around. That was really confusing to me and I am sure I will mix it up often.

Not Me! Monday

Baby Stellan is still in the hospital. To get a full and accurate update, please go to My Charming Kids. He is being seen by a new and more specialized cardiologist now, who is not even part of the hospital he is in. He may be facing a difficult and unprecidented surgery, which would include transporting him to a different hospital...possibly across the country. Please continue to pray for the MckFamily in this hard time. Not Me! Monday was started by Stellan's mom a few months ago to show how God uses imperfect moms to raise children, and to help us vent out the craziness of life.

This week I definatly did not hang my Bummis wet bag out of the van window in an effort to have it dry by the time I got to church. NOT ME. My laundry is always clean, folded, and left in baskets put away in a timely fashion.

I did not put up three posts today because I hadn't blogged since Thursday.

I also did not drop a chocolate egg in Snug's carseat only to have him discover it one 70 deg (where is that weather now I'd love to know) afternoon as he climbed in. I did not overhear him desperately whispering "Oh no, poo poo in my seat" and trying to hide it! That kinda cracked me up. He really thought he had messed up without knowing it.

I did not underestimate how many diapers I would need when I dropped Baby J off at Liz's house Sunday night. She did not have to give me a dishtowel to use as a diaper on the way home. Thank you Liz, you are a lifesaver!

I did not let my son participate in an Easter egg hunt Saturday and then promptly take away all the candy because I don't want him eating it. Not Me.

I did not almost choke when I saw my MIL hand my infant to an extremely shaky resident of the nursing home to hold for this picture, which in all seriousness I did not take. The lady was thrilled, but I was a nervous wreck.

I did not get up on my soapbox earlier today and get really aggitated about people who do not appreciate police officers. Sorry if you've had a ticket lately, slow down.

I did not swell with pride when Baby J ROLLED OVER AND AROUND ON THE FLOOR recently while playing. Can you belive it? We are just busting out with pride :o)

I also did not get a bit teary as I taped Snug singing for you all. Enjoy below! (To turn off my obnoxious lovely jukebox music so you can hear him sing, scroll to the bottom of the page and pause it.)

I will leave you with a few more pictures from the weekend. This is Baby J's brand new SPF 50 swim shirt that goes with his new swim trunks. Snug has a matching set. Their Grandma Dray gave them to them for Easter!I mentioned earlier that Snug had a great time showing the nursing home residents his egg hunt treasures. Here is one picture. He stood and talked to this lady for about 15 minutes. He showed her each egg and its contents about twenty times each, no exaggeration. She was so happy to listen.

Last, but certainly not least, Aunt Jane was with us Thursday night through Saturday morning. She was on her way to Cincinatti to visit a supporting church. The boys like her very much and she was a big help. Thank you Aunt Jane!

I ♥ Faces tomorrow morning!