Saying goodbye

This week will be hard.  We will say a lot of goodbyes and I know I’m going to cry.  A lot.  I have been already.

This is our last week of services with our therapists through Early Intervention.  This is our transition week.  We’ve gone through a few OTs, one PT, one SpP (speech) and 3 aquatics PT (although we can continue with our aquatics PT through insurance).  But it doesn’t mean anything in terms of how I feel.  These therapists have been through so much with us that I feel like they’re more than therapists.  They’re our friends.  I’d even say they’re part of our family.

These women, Kim, Mindy, Teresa, Becca, Debbie, Diane, Tresy,Amy, Susan, have done more than provide us with therapies and routines for LJ.  They’ve helped us get through one horrible appointment after another.  They’ve given us different perspectives of LJ’s behaviors.  They’ve talked us through some frustrating diagnoses.  They’ve supported us as parents, grieving with us, understanding our situations, giving advice, and even putting us in our place (by that, I mean not letting us dwell on negative feelings or whatever the situation called for). 

And while I’ll never forget any of these beloved women, Kim, LJ’s vision teacher, will always have a special place in our heart.  She has been with us since LJ was only a few months old.  She listened to me rant and rave about doctors, appointments, therapies, and other unrelated things.  She was honest with her opinions.  She was an advocate, not just for LJ, but for us.  And while all of our therapists did this, she’s been with us the longest.  She knows him.  She knows me.  She knows the pain that we’ve gone through and has seen us through it. 

The best gift she gave me was showing me LJ.  Not his disabilities, or even is abilities, but him.  She helped me see past all of his equipment, delays, diagnoses, and helped me see his beautiful personality.  This is something I could never repay her for.  Where I once would constantly worry about what the future would hold, I am now able to enjoy the here and now.  I’m able to enjoy my son, for who he is.

I’m going to miss (and already do miss) these wonder ladies who have made such an impact on our family’s lives. 

LJ would not be here is it wasn’t for each and every one of our therapists.  He wouldn’t have made as much progress as he has.  He wouldn’t be where he is today, without them.

And neither would I.

honesty is usually the best policy

I’ve never been the confrontational type. Well, I take that back. I’m confrontational only at the wrong times… say when I’ve let the pot boil a little too long and it’s ready to explode (the pot, of course, being a metaphor for my emotions).

One of the things about therapy is looking at how you deal with your emotions. And really, I’ve never done that before… not with any other therapist, anyway. And me? I tend to lock things up. I’ve seen one to many explosions in my day and I try to avoid them.

Which, of course, leads to one anyhow.

So, I’ve been stating how I feel. Maybe not right in the heat of the moment, but after taking a few moments to settle down… otherwise, it comes out more of an accusation then a fact.


as opposed to…

I was annoyed by the tone in your voice.

subtle differences.
In other YBR (Yellow Brick Road) news, LJ got his first round of Botox last Friday. The doctor actually decided to do less injections then originally planned because she was so impressed by his progress.

It’s really nice to hear that, from time to time. I mean, we do our best, but we see LJ everyday; the differences aren’t so obvious to us.

Anyhow, LJ did great. Of course he cried; I’d cry too getting injections into my muscles. Louie had to step out with Noah. I wasn’t going to take the chance of him passing out; he almost did when I got my epidural with LJ.

But they gave LJ a med that is pretty much like Tylenol 3, to calm him. He was sooo calm and silly! I wish I had videotaped it. He was very giggly.

The Botox is suppose to start working in 7-10 days, but I’ve already noticed a difference; his hand isn’t as tight, he’s moving around more, and he’s tolerating positions (like sitting) for longer periods of time.

For those of you who think I’ve gone crazy and tried to get rid of my babies wrinkles: Botox is also used to reduce spasticity… meaning, the tightness in muscles, called tone. In a lot of CP cases, people use their tone to do things instead of using their muscles normally… like my son uses his tone to straighten out his left arm. It happens most often when he’s frustrated. Botox will take that tone away and allow us the opportunity to show him the correct way to use his muscles. We’re suppose to start intense therapy but I bet it won’t start till after Thanksgiving. Very frustrating.

We also had a team meeting before out Botox appointment, with all of our therapists. But I’ll leave that for another day.

Oh, and to leave on another great note… LJ has gained 2 lbs!!! It doesn’t sound like much, but really, it’s leaps and bounds for him.

I admit, it’s been tough. Having two kids is not like having just one. And when one has special needs, it can be a real struggle. Add to that, some post-partum hormones, and we got ourselves a melting pot.

LJ is getting his second molers in. Which is slow and painful… for all of us. He wakes in the middle of the night, crying. He hasn’t been eating well. And he’s been biting himself, again.

Lots of changes these past few months, so let me catch everyone up. Rehab Institute discharged LJ and said they would call us in a few months to re-evaluate and see if he needs to come back. Since there was never really a clear answer as to why, this left both Louie and I frustrated. I mean, he’s doing so well and we just got a walker for him! (pictures of that to come!)

Our state cut funding for education and while budget cuts are all around, special education was hit pretty hard. All of the part time therapists were let go, which meant we had to say goodbye to our OT, Amy. We miss her. Especially since we’ve had a temporary one. Next week our permanent Rebecca is suppose to come. She’s actually from the same place as our vision teacher, Kim, which means she understands his cortical visual impairments. I’m excited to see what she has in store for him.

We saw a speech therapist (Teresa?). We’ll be seeing her for about once a month now. We got LJ a Big Mac, communication device, but right now, he just plays with it. I know he understands it (we have it saying, “More please” for food) but that big red button is just too fun not to play with.

Aquatic therapy is going great. LJ has a love for the water and especially loves it when his dad takes him to the pool in our complex.

LJ has also been spending 45 minutes, twice a day, in his stander, which is excellent!

Noah is starting to learn how to play. He loves to be held upright, which some have said could be a sign of reflux, but he doesn’t spit up much. I think he just likes to see the world. It’s amazing to watch him grow so fast. I notice all of his milestones, not matter how small. And while I cherish all of these little moments, they also make me sad for LJ. I’ve never had such conflicting feelings in my life.

They definetly listen to each other, though. When Noah cries, LJ thinks it’s funny. When LJ cries, Noah sticks out his bottom lip with the cutest sad face. It’s almost as good as what LJ use to use on us.

As for us parents? We’re beat. Yesterday was Louie’s birthday. We celebrated by staying home and drinking a beer. I know, we’re party animals.

Glad you approve

Well, we missed a week of therapy with the Rehab Institute because the insurance wanted to make sure we weren’t duplicating services with EI (our current therapists) and to make sure we basically didn’t have the same goals.

Which is a little ridiculous to me. I mean, all of our goals tend to be along the lines of LJ reaching his fullest potential and being as independent as possible.

Of course, the Rehab Institute is a medical facility. They’ll be applying intense therapy with the loads of medical equipment they have access to. They’ll work him to a bone for the 2 hour sessions he’ll be there, twice a week.

Our EI therapists come to his natural environment (our home) and teach us how to do things on a daily basis that will help him. They teach us how to use ordinary things for therapy. It’s not the most intense therapy but it’s not something I would drop either. They’ve been extremely helpful in helping us find our way and coping with this journey. I just know it’s time for LJ to do more.

So needless to say, I was a little frustrated with the insurance company. It worked out though, thanks to the collaborative efforts of his coordinators at both EI and the RI. We start this Friday.

I still have yet to hear from the aquatics people, though. If I don’t hear anything by next week, I’m just going to let our EI coordinator handle it. I have so many appointments to keep up with, my head is spinning. Plus, I’m seeing my own doctor every week now. More on that later.

I’ve really been inspired by a fellow blogger who’s son is in a similar situation. His parents work really hard for him and while others tell me I’m doing so much for LJ, they’ve really inspired me to do and seek more. Check out Elijahland.

The Rehab Institute

Last Friday we went to the Rehab Institute for our two our evaluation. It was a different feeling, walking into this place and seeing all the children work, all the equipment they had. I was overcome with excitement.

We met with the speech therapist first, which I was thrilled about. I’ve asked for a speech therapist through our EI services (who our current PT and OT work from) but they didn’t think he was ready.

The speech therapist thought she could help him learn some communication tools as well as help strengthen the mouth for feeding.

Then we met with the OT and the PT. They were wonderful. They checked his tone, did stretches, and did a mini-session of sorts. We discussed goals, his current therapy sessions, and equipment they could help us obtain. Then, with pedi-wraps on his arms (keeping his elbows straight) and with hardly any support, they had him sitting. Sitting. I could have cried right there.

He fussed and cried for a good part of the session, but it wasn’t any worse then it is with Amy and Mindy. In fact, they said he was dealing with it pretty well, considering all the things they were doing with him.

They recommended we come twice a week, for two hours. The OT said she’d like to co-treat with both the PT and the Speech Therapist, she’ll just need to get it approved. They talked about a third day, but wanted to wait and make sure the insurance would approve this first.

We’re going to be busy. I’m still waiting on EI to contact me about the aquatic therapy, which I’m hoping we can do every week as well. That will be 6 therapy sessions a week, on top of my weekly doctors appointments and his other doctors appointments. I think it’s good, though. I know LJ can do so much more, he just needs to be pushed the right way. Doing the same thing we have been doing was fine, but it wasn’t producing the results I would like… that I know he’s capable of. Sometimes I feel like we’re on the cusp of making another step. but we just can’t seem to find a way.

I’m really excited. Louie and I felt so good after the session. We’ll be sacraficing a lot, like time at work, but there’s no question on whether or not we’d do it.

The best part is, he gets to be interactive with other children, preparing him for his baby brother. And when they had finished the session? They held him till he stopped crying before giving him to us.

I almost cried again.

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