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.

In the Mood…

I know, I know, I said I would be working on my vacation posts, but I have a good exscuse! I’m waiting for the pics from the first and second day to come in. For some reason I decided to take the rest of the vacation on my digital camera but the first two days, I used the “old fashion” kind.

This week alone, I’ve had 4 appointments; Beth, Kim, Amy, and the pre-op appointment for LJ’s surgery. Crazy, as usual.

It was great seeing Kim. She is so sweet and understanding. Sometimes, she’s MY therapist too. She really gets that parent’s of special needs kids often need support themselves.

And there it is. I’ve come to terms with the fact that my son has special needs. I have, in no way, accepted it, but I’m starting to be okay with it. I still don’t think it’s fair, I still cry about it sometimes, but if anything, it’s made me more determined. This acceptance has led to many things, including an idea of developing a web site for special need’s parents. Basically, it would be a blog but somewhere parents can come and know they aren’t alone. I think it’s something I’d work on once I started taking classes for my web design certification. More on that, later.

Amy is nice. She adjusted her schedule so we see her Thursday afternoons, which is perfect. We’ve talked about adding on a physical therapist to his routine, but have decided to wait until after surgery. One step at a time.

LJ’s pre-op appointment went well. We ended up getting a general anesthsia appointment. I haven’t really talked about that much here, but it will come in his birth story which I’m working on as well. I got stuck because I couldn’t remember certain details that I wasn’t there for, so I’m going to ask Louie for help. I thought about asking him to guest post, but some things are easier for me to discuss then him.

My friend’s dad, that was in a coma, passed away. Most of his brain was damaged during the two strokes he had. I’ll always remember the things he did for me. He did a lot of things I wouldn’t necessarily approve of, but he did a lot more things with us then some dads do.

My BFF’s dad had a heart attack earlier this week. It was a mild heart attack, but most of his arteries are clogged. He is having quadruple bi-pass surgery today. They also found out he has Emphysema, but if he quits now, they expect him to be fine. He plans to, along with changing his lifestyle.

I’ve been praying for both their families.

But to end on a lighter note, I just noticed that for the entire day, including LJ’s pre-op appointment, my pants have been on backwards.

More Weight to Bear

Sleep is not for moms with young ones. Last night was proof of that. I can’t just blame it on LJ, though. My dreams were…vivid. I hardly recall them but they disturb me anyhow.

I’m starting to recall some of yesterday’s session with Kim. She pointed out that LJ’s left rib sticks out more and asked us to point it out to Debbie, because she knows more about muscle tones and bones then she does. I had never noticed it but today I’m freaking out because there is a big difference. I pray this doesn’t keep him from doing what he wants to do.

Will the worrying ever end? Probably not, since I’m a mother for life now.

Can Eye Deal?

We had our first in-home visit from Kim, our vision therapist. I absolutely love her. I know we’ll make good progress with her and her visits every other week. She talked about things going on with him such as his left eye crossing when an object gets too close and sensitivity to light and various things we can do to help work with him to not overwhelm him. He has a problem processing… which I honestly am not sure what that means. That’s my fault, really. I’m so exhausted, I hardly recall the appointment.

LJ and I have a had a long day. He just didn’t want to nap, and every mom knows how important naps are. I could use one right now.

I did jump on the ball, though…(who came up with that saying?) I called our pediatrician’s office and talked to a nurse about getting a referral from our doctor to see the neurologist. The involuntary dropping of his head is a small hindrance to some of the vision therapy. Well, not really, it would just be easier. We also want to make sure there’s nothing else we need to worry about, if all this wasn’t enough.

My stress level peaked when I opened a couple bills from the hospital. I want to scream. Mostly at my insurance company. Why are they so slow? I don’t know how many times the hospitals are going to re bill them. And aren’t they suppose to send me a letter of procedures they aren’t covering? The only statements I’ve received are the ones they are. I’ve called them so many times and they’ve just given me the run-around. Just tell me that you aren’t covering the claim so I can appeal it.

Sometimes I think about when we’ll have our second child and it scares me. I wonder if we’ll go through this again or if we’ll have a “normal” birth where we can rest for 2 days, with the baby. Then I feel guilty, because I don’t want my son to feel like he was trouble for me and if it does happen, I wouldn’t want him or her to feel that way either. I just don’t know if I have the strength to do that.

The pediatricians office just called back. They want me to take him the developmental pediatrician first, which is ridiculous because we were suppose to have an appointment with them already (when we were discharged, the nurses set it up) but the appointment had disappeared. Plus it will take months to get into a neurologist since they are short staffed. That’s exactly why I wanted to schedule the appointment now.

Some days I want to forget I quit smoking.

Hardly therapeutic

LJ’s therapist came over today for his first session since the holidays. Overall, he did well. He’s starting to sit up and trying to crawl. She did note there were toning issues in his left arm, after Louie made a comment about how he only uses his right to grab things. Plus, she mentioned the neurologist again because he still has an almost involuntary way of dropping his head every now and then.

I think I get frustrated, because I want him to be doing nothing but good. He is making great progress but once she mentions neurologist, I freak out. I think it has to do with how we were treated both at the hospital he was born at and The Children’s Hospital. I often have to remind myself that he’s young, resilient and proved all the doctors wrong and he has time to grow.

Of course, now we’ll be seeing Debbie (therapist) every week now. She’s coming back tomorrow when the vision therapist, Kim comes so they can correlate goals and what not. I’m sure Kim will want to see us every week as well.

We can’t get an appointment with the neurologist at The Children’s Hosp unless we have a letter from a doctor. Supposedly when LJ was discharged, they had set up an appointment for January to see a developmental pediatrician. I have called everyone about this appointment (it was made over 6 months ago!) but the appointment has disappeared. After the therapist session today, I called The Children’s Hospital to obtain all medical records. I’m done being in the dark. I also called our pediatrician but they were at lunch.

I often remind myself how fortunate we are, even through our struggles. There are a lot of kids out there that are a lot worse off but don’t give in. I have a new admiration for children and their perseverance. Not to mention their parent’s strength. I know LJ has given me strength I never knew I had.

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