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.

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.

Rehab Appointment

Last Tuesday we went to the rehabilitation clinic to see Dr. Rehab. Our PT had expectantly let us down and failed to email the notes we went over, including adding some of her own, to discuss with this doctor. I had felt like the first appointment was a complete and utter FAIL. But of course, all the other doctors would take 6+ months to get into, so I did my research, and put my Mommy Pants on.

We discussed his equipment and some of my problems with it (stander is old and missing parts, left splint slides off during therapy, denial of high-low folding booster base for kid cart). She agreed he probably needed to be fitted for a stander, wrote an order for new splints, and said she would talk to the United Seating people about the denial, to see if she could do anything. She also said she’d order Pedia wraps, which are kind of like ace bandages but better, to wrap around his knees while we’re waiting for the new stander. She said we could then use them during therapy around his left arm.

I then went into therapy with her, telling her a little bit about his therapy and how I thought he should be progressing more then he was. That he works well enough with the therapists but it seemed like he had done better with his first (Debbie) and I wasn’t sure if it was them, him, or what, but that I’d really thought he could be doing more. I asked her what her opinion was on the amount of therapy we were doing weekly, and she never really gave me a direct answer. She did, however, say she’d refer us to the Rehab Institute (Children’s Hosp had a waiting list) for an evaluation and that they were excellent.

I then discussed aquatic therapy. I told her I thought he would greatly benefit from it, that even some of the therapists had recommended it at some point. She agreed but was concerned about the waiting list, again. She said they could do a couple of sessions and teach me some things, but she wasn’t sure they’d be able to do a regular schedule. We shall see.

We touched a little on Hippotherapy (horseback riding). She thought it would be great for him when he was a little older. Maybe by next visit, he’ll be ready. Grandma has already talked to some people about it. I’m concerned about cost, so I’ve been thinking about ways to raise funds for him. I’ve heard nothing but good things about this therapy. It helps with balance, trunk control, and there’s just something soothing about horses.

I can tell LJ is ready to do more. He flips on his tummy, puts his butt in the air, and whines like, what the hell do I do from here? So this next few weeks, I plan on working with weight bearing through his arms.

I am really excited about what we got accomplished during that session. When I talked to our PT later (who felt awful about forgetting the email), she said there was an aquatic therapy through EI (Early Intervention-where she’s from) and that it wouldn’t replace normal PT. She said she’d call our coordinator and tell her we were interested. I thought that was great, but it kind of left me wondering why no one had mentioned this before??

little man with the plan

So I’ve been feeling out of sorts lately, hence my lack of updates. I’d like to blame third trimester hormones but I’m sure a lack of social life combined with no hobbies, also has something to do with it.

Anywho, the therapists meeting went pretty well. I was a little nervous about telling them how to do their jobs, but they were very receptive. Plus, they really couldn’t take offense when their boss, LJ’s coordinator, was there. She helped me through the process, and I didn’t even call her beforehand.

I suggested a notebook, where they write what they worked on weekly, so I could see and understand what we were working on and so could Louie, or anyone else for that matter. I also suggested getting a big white board and planning for monthly mini-goals (we have much larger, 6 month-1 year goals) that would get us to our larger goals and keep us focused. I suggested they give me something to work on every week, and with a calendar staring right at me, I was bound to do an hour of therapy with LJ, on my own.

I talked about some things I wanted him to do or work on, like increasing function in his left arm/hand, and not just using it as a support arm. I want him to start feeding himself, communicating with me, playing with more advanced toys. I want to push him. I know he can do more. I don’t want him to get comfortable with mommy doing everything for him. Mommy is getting really tired.

LJ’s coordinator suggested we have team meetings like this every 3 months, to re-evaluate.

I still need to pick up those things from the store, we’ve just been waiting for that paycheck to hit the bank. I plan to use the white board for keeping track of feeding as well. Feeding has become a little bit of a pain again, recently. For awhile I blamed it on his two teeth coming in, but more recently it seems to be that he’s just distracted. We’ve sat in the high chair for up to an hour before. And I feed him every 3 hours.

This weekend will be nice. It’s our 4 year anniversary this Saturday and Louie is taking me to a nice Italian restaurant where I’ll be served (hence, the WAITER), order desert, and not have to do the dishes afterwards. And I get to get all pretty. I just need some cute, flat shoes.

A Week Full

Things have been hectic this week. I’ve barley had time to catch up on my Reader (down to 62), let alone catch up on my blogs. Here’s a quick recap of our hectic schedule this week:

  1. The long awaited Neurology appointment (Monday) Ugh. We’ll just leave that for tomorrows post, since I’ve got plenty to say on that one.
  2. EEG and Rehab appointment (Tuesday) Rehab was suppose to be on Monday but there was a schedule mishap that wasn’t my fault. These appointments went considerably well, especially with LJ on 3 1/2 hours of sleep. It was a long day for me. This one also ties into the Neurology appointment.
  3. Post op appointment (Wednesday) LJ’s eyes look great. No infections, despite him rubbing his eyes (I tried to stop him, but you can only do so much). He has to wear a patch over his left eye 1-2 hours a day to help strengthen that musle
  4. Occupational (Amy) and Physical (Mindy) therapist (Thursday) Amy was thrilled to see his head control improved. She figures it probably had to due with his lack of ability to coordinate his poor vision with his hands and head.
    Mindy showed us a few stretching moves for his legs and his left arm. She didn’t work him too hard since Amy had been there earlier. Next week, she’ll be coming at the same time as Amy for some co-treating. This, and the fact the the therapists actually talk to one another, thrills me.
  5. Louie’s birthday was on Tuesday. He had an extremely busy day, since he had taken off last Friday and Monday. I was so busy running around that I didn’t have time to bake him brownies or really do anything for him. I wanted to get him a Blackberry to help with his business but we’ve been having a few issues with his work so we want to at least settle into our new place before we start another bill.
  6. That’s right, we’ll be moving again, in October. Apparently our apartment complex has new owners and management and they’re trying to raise our rent 85 bucks. Not gonna happen since every time I call the maintenance man, I have to call the office at least two times before anything will happen. And the maintenance man’s word doesn’t mean crap. They left my A/C leaking all weekend and I had to bitch before someone would come clean our carpets. I wonder if mold got into the ventilation system because I’ve been sneezing like crazy. They said it wasn’t likely. AH.

Today, no appointments and hardly any work (that’s going to kill me come moving time). I’ve just been kickin‘ back and thinking about what to do this weekend. People have actually invited me out with them, and even though some Frenemies might be there, I’ve been considering it. I really need to get out after this week. And I need to do something for Louie. With all the love and flowers he’s been showing me lately, he deserves it. Anyone have any suggestions? (I already gave him something, Mean Girls style.)

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