So Proud

Well, he's a graduate!

Today was J-man's last session with the speech therapist. Despite my skepticism about the whole thing, he truly has made huge improvement. His shirt stays dry almost all the time. His jaw muscles are stronger, although not 100%, and he's starting to develop the ability to elevate his tongue independently. The therapist and I agree that we've done what we can with weekly visits, and now all we have to do is continue at home. She agrees that he does have some degree of general hypotonia, and so a lot of his delay is something that will just have to happen on his schedule.

And now that our Mondays are free, we're looking to fill the time with a playgroup or even *gulp* preschool.

He's growing up so fast.

I am the root of all evil

...or at least the evil that dwells within my child.

J has no interest in doing anything that can be labeled as 'learning' or 'homework'. This, unfortunately, does not translate well into the world of speech therapy. Most times it's like pulling teeth to get him to do any of his exercises at home, and he's even on to me when I try to turn it into fun and games.

Today at therapy was more of the same... attitude, arms crossed over his chest, chin down, staring at the floor. Then the therapist told him, "Ok, Jonas, if you're not going to do your work, Mommy's going to have to leave." So I waved goodbye to him, and stepped out of the room. She has one of those neat one-way mirrors into the room, so I could stand on the other side and watch him without him knowing.

Lo and behold! The moment I left the room he became Mr. Cooperation. I sat and watched in amazement as he performed every one of his tasks without even a hint of a whine or fuss.

Looks like I've now found myself a 30 minute chunk of weekly knitting time.

Because he was so good for therapy today, we stopped at the craft store on the way home and we picked up some little wooden tree ornaments and some paints and glitter and we came home and made little Christmas goodies for the grandparents. He had a great time dictating what shapes I should draw on the ornaments with the glue before he sprinkled on the glitter, but after I did a few of them, I encouraged him to do it himself. The results are some truly gaudy treasures that I'm sure everyone will take pride in for years to come.

Good News/Bad News

Welp, after minimal progress with speech therapy since September, the therapist and the pediatrician were grasping at straws, and so they sent J for a barium study this Monday to evaluate the anatomy of his throat. He has a very weak swallow, and the thinking was that maybe it was being caused by some sort of defect in his esophagus, etc.

The test itself was a breeze, and Jonas thought it was great fun to see what he named "bone-jonas" on the tv screen in front of him. All it consisted of was him taking a few bites of foods in varying consistencies which were laced with barium to show up on a moving x-ray. I'm no expert, but from what I could see on the screen, everything worked perfectly.

It was no surprise to me when the pediatrician called today to let me know that the test results were fabulous, and my kid does not have any physical defect preventing him from swallowing/causing him to gag/making him drool.

So, the next set of options are to continue in speech therapy and see if improvement is just slow to happen, referral to neurology to make sure that my kid isn't suffering from some neurological defect, or drugs.

Don't get me wrong... I'm in no way interested in finding out that my son has some sort of defect or problem, but wandering around without a label and grasping at staws as far as treatments go is starting to get depressing and costly.

For now we've chosen to continue in therapy and see where it goes. If there's no change in two or three months, then we'll consider the neurologist, and as a last resort, medications, which don't really solve anything, they just dry up the saliva, and that concerns me for a lot of reasons. I mean, spit's kind of important in things like digestion and oral health. Not to mention, imagine the feeling of walking around with cotton-mouth all the time.

Bleh...

All hail the HMO

bowl
Originally uploaded by mommyleek

Does anyone remember this face? Yeah, the one covered in sore and cracking blisters? I do realize that the cuteness of the kid somewhat diminishes the eewww factor, but humor me.

This was J a year and a half ago, and it was the straw that broke the camel's back as far as me making the decision to withdraw him from daycare. The doctor diagnosed him as having hand, foot and mouth disease, and I knew exactly where it came from since his entire class ended up with it after one particular child arrived with a suspicious spot on his lip, which the daycare owner did not question the parents about.

HFM, to make it easier to type, is one of those things that are like Chicken Pox. You're only supposed to really get it once in your life, and so once it was finally healed, which took twice as long as the doctors and the internet said it would, but that's just my kid's luck, we didn't worry much about it. All kids have thier illnesses, and we were glad to have that one behind us.

Fast forward about a year and a half...

About two weeks ago J got this nasty looking fever blister on his bottom lip. We immediately attacked it with campho and kept him slathered in chapstick to help put a barrier between his lip and his saliva so that it would dry out. Sure enough, it did, but not until it was done leaving a big nasty scar.

Wait! It gets better, I swear.

This Thursday he wakes up with his lip looking a little redder than usual, and his drooling, which he's made some progress with, was terrible all day. As the day progressed his entire bottom lip deteriorated into clusters of nasty little blisters... see above referenced picture if you really want to know what it looks like.

So Friday morning I took him to the pediatrician, already knowing what they're going to tell me-- J never had HFM, what the kid at daycare gave him was HSV-1, better known as Herpes. Cute huh? To tell people your kid has herpes all over his face. Yeah, I know. It's more of a stigma to the word than it is a disgusting disease. I mean, probably 50% or more of us carry the virus, and how many of us haven't had a fever blister in our lifetime? But still- swallow that one... my kid has herpes. Go ahead, try to apply that to your own sweet little kid's face. It's ugly, isn't it?

So, a copay at the doctor's office, and another (Good Lord! Have Mercy!)$50 copay for a 5gm tube of cream with copious refills later, we're left with a diagnosis that makes me sick and a kid who is going to suffer recurrent breakouts of this for the rest of his life.

But here's something interesting- in my research about HSV-1, I found this little snippet: "The virus remains in the nerve tissue of the face." Which leads me to wonder if maybe the virus, or his severe case from a year and a half ago could have something to do with his drooling/oro-motor deficits/hypersensitivity. Maybe I'm grasping at straws simply because no one else can seem to give me a definitive reason for any of it. There's no label, there's no real cure...it seems like we're just trying stuff because we don't know what else to do. And it's frustrating.

Frustrating because I have to watch my child struggle with it, and also because I have to shell out the money for the therapy that my insurance doesn't deem necessary. Dn't get me wrong- I'm not trying to put a dollar figure on my child's health. But it certainly would be nice to see some progress for my money-- or at least some answers.

And that's my Sunday rant.

I'll post something more uplifting once I've had more coffee. I promise.

Mommy for hire

J had his appointment with the speech therapist this morning.

We were about 5 minutes late getting there due to traffic. Who knew that it'd take over an hour to go less than 15 miles? It took 20 minutes just to get through the first intersection past my house, and another 20 to make it another couple of miles to the interstate on-ramp. Ugh! I despise being late for anything, so my morning did not start off well.

Once we got there, she and J set to work on some evaluation where they looked at pictures together and he named them while she wrote down stuff on some sort of score card. Meanwhile, I filled out all the paperwork that I should have arrived early to do.

After the verbal assessment, she felt around in his mouth and had him play a funny face game with her where she tried to get him to stick out his tongue and move it from side to side/ touch his teeth, etc. They blew bubbles together and tooted on horns and played with some toys. He really enjoyed his session, and was upset that it was over.

The verdict? He has some weakness in the right side of his jaw and in his right cheek/lip. He also has poor coordination of the muscles of his face, as well as some general muscle coordination problems. The good news is, she's pretty confident that he can overcome it in time, and that the drooling will also improve. He has some lag in his speech, but she says that he's pretty much within the norm for his age group and that we'll work on that too.

Now for the bad news: It's going to be expensive.

I don't know why I didn't consider that before getting started. I guess I just sort of thought, rather foolishly, that we'd go, have our evaluation, then be sent home with some exercises and stuff, then go back in a month or so to see how he's improved. Ummm... negative. The cost for evaluation alone was ridiculous, and sent me scrambling home to transfer money before the charges bounced. And now we're looking at an undetermined number of weekly visits at $45 per 1/2 hour.

I'll gladly pay any amount of money to ensure that my son has every opportunity in the world, but man does it start to add up!

That said, I really like this particular therapist, and chose her based on both the fact that I know her personally, and she comes highly recommended by my pediatrician. But insurance won't cover her... and according to her, and to phone calls I've made to the insurance company that have been like talking to a brick wall, they don't cover a whole lot of anything anyway.

The only option I have right now seems to be picking up some extra shifts at work. Blech! But really, what other option is there? If I can figure out what I'm going to do with J, I'll be begging them tomorrow to let me pick up another shift, or find another VERY part time job on the side.

**Sigh**