Living with Cerebral Palsy

I know I don't talk about this much. It's difficult, and for the most part, I don't like my son to be restricted by a diagnosis. I'd rather look at what he can do, rather then what he can't.

It's frustrating though. Not knowing where your life with your son is going. Not knowing what the next step will be, what I should be working on with him. Trying to figure out his stages as oppose to "normal" children. It's a little easier because he's my first and I really don't know what to expect (I pretty much stopped reading those milestone books after a few months).

He was denied, again, the high-low base for the kid cart. Yeah, we'll get the kid cart but it's hard for me to see what the point of getting it is. It's been awhile since we had the appointment where we talked about it and all I remember was focusing on the benefits of the high-low base.

He's getting better with his upper trunk control. He seems to want to "bounce" more. He moves his little butt in the air when he's on his tummy.

I feel like we could be doing more. Like I could be doing more. I know he has so much more potential and it feels like we're not tapping into the right spots. Sometimes I really wonder if his OT is a right fit for him.

There's no guidance in situations like these. There's no handbook. It's a lonely road, that no one but another mother of special needs understands. I've tried and tried to get into local groups around here, but CP is just a minority compared to things like Autism.

There are so many good days. Days where I feel so positive. But there are a few days that trickle in and I just think that this is not fair. This is not fair to my baby.

I'm so proud of him. I love him so much that my heart aches at how much he has to struggle.

He has a little over a year left, before the Early Intervention ends and we're turned over to the school district to start a new...adventure. This brings about another load of worry and fear.

This Thursday is an evaluation with the therapists. To see where he's at and where we want to go. I've made a detailed list of all the categories we work on and I plan to make specific goals in each category. I'll get a notebook for the therapists to write down what they did during their session so that everyone is up to date and knows what we're working on.

If things don't improve with our OT in the next few months, I'll be asking for a new one.

Extract it

Nice ceiling, I thought as I tried to distract myself from the pressure I was feeling in my mouth. I wonder if it's real wood.

It was really a fast process. We were in and out in less then an hour. But I still hadn't expected anything to be done this time around. It was probably best I didn't have time to mentally prepare myself. An extraction would have just made me psych myself up.

With a mixture of pregnancy (babies like to steal my calcium), a lose filling, and me grinding my teeth at night, particularly when stressed, meant my tooth was lost. It hurt worse when the anesthetic worse off.

MrB was sympathetic. When we first started dating, I took care of him when his wisdom teeth were pulled. MrB doesn't like needles, dentists, or, well anything that has to do with poking you, so he went completely under for the process. He was miserable for a week.

He took care of LilB, who decided to head butt me the one time I was going to help feed him. He cleaned and reheated dinner. It was...nice, to say the least.

In other news, my dad had his sonogram done yesterday. We won't know the results for two weeks, which seems kind of crazy to me. I'm not sure what kind of news to be expecting but really, I'm more concerned with what the outcome of the news will bring.

Speaking of sonograms, my BFF is pregnant, after trying for a year now. I better start saving for that kick-ass baby shower.

Dear Lima

Dear Lima (Baby#2),

Hi Sweetie. Sorry for the nickname. One week during this pregnancy, babycenter reported you were about the size of a lima bean, and the name sort of stuck. Trust me, it's better then some of the names your brother has earned, but I'm sure you'll earn a few of your own too.

Like many parents, I have a lot of hopes, dreams, and fears for you. But unlike many families, you'll get to be born into a very special family. It will be a lot different then how others grow up, some might even say harder, with more responsibilities, but I hope it teaches you to appreciate life and people that come into your life. I hope it makes you a compassionate, understanding person.

I worry that you'll feel too much pressure to help mommy and daddy. I worry that you'll feel like we don't give you as much attention as LilB. I worry how you'll feel when other people look at your big brother differently.

But mostly, I worry that something will happen to you, too.

If it does, that won't change our love for you. You'll still be our baby. Our son.

I'm really excited to meet you but I can definitely wait the remaining 17 weeks. I'm excited for LilB to meet you. I know he's going to love having someone to play with, when your strong enough. I'm excited to see how you to will encourage each other to grow. I can't wait to see how your personality develops and who you'll look like (right now LilB looks more like mommy). Either way, I know you'll be beautiful.

One things for sure, you'll be born into a very loving family. You're already loved very much and we're already doing everything to help you succeed.

Love,
Mommy

Worried and....relieved?

I called my dad today because I found out that one of my aunts' house caught on fire. She pretty much lost everything. But I found out I've missed a lot more than that.

Apparently my dad was sick for a little while and went to the doctor. They did some tests and believe his liver is damaged (I couldn't imagine why). I was a little upset that he hadn't called me about this but he threw in there that he hasn't been drinking for a couple of weeks now.

Wait. Hold on a second.


You haven't been drinking? Are you going to AA? I was going to offer to go with him, if he was.

No. You don't need anything when someone tells you if you have another drink, you'll die. With the right motivation...


*cringe* Well, I'm proud of you.

See, that sentence he said wouldn't have been so bad if he hadn't said the stuff about motivation. I'm not sure if enough time, or bottles, have passed that he soholmehow believes that his drinking doesn't affect our relationship, but alcohol has caused a lot of disagreements between him and I. I still remember when my grandfather passed, crying in the bathroom at work because I just had an argument with my dad about him drinking himself to death.


He wants to believe it has to do with Cassy (his wife) and while we don't get along the greatest, I wouldn't stop putting effort into the relationship just because she ticks me off. I can get along with her when I'm not living with her.

MrB asked me if I told my dad that he hurt my feelings. I didn't. I just want to be supportive that he's not drinking and show him what he's been missing.

I don't really want to give up hope or anything. I mean, he has given up his red meat but what if he thinks it's okay once his iron levels regulate and his sonogram comes back with positive results? I'm not prepared for the outcome of that line of thinking.

Sick again

New layout. Needed something cleaner, simple, but still cute. I've been trying to organize my life and still trying to catch up from the holidays (still 700+ entries to read) so cleaning up my blog seemed to be appropriate.

I'm sick. Second time this pregnancy. I don't remember getting sick with LilB.

Despite being a little behind in my reader, I've been getting a lot done. I've really tried to get in contact with groups associated with Cerebral Palsy (CP). I joined a group via phone that basically is sending me tons of information on CP and I called my local UCP group. They told me there weren't really any groups with parents of children with CP, that mostly that would be Autism and that CP was kind of like the minority around here. The groups that they did have would be people with CP. I was disappointed, but I haven't given up hope. It's easy to get lonely when you don't have others to relate.

We've got caught up to a lot of bills and we've started to plan for a plan on buying a home (got to build that credit). My house is mostly clean (haven't felt well enough to clean today) and I've got my info in for LilB's appeal on the kid cart in(something I don't think I've talked about but is basically a wheel chair stroller that has attachments like a seat the raises up and down, designed for him).

LilB hasn't been gaining weight, again. Now I'm on a try and feed him every 3 hours schedule. Keeps me busy. Let's hope it works, our we'll be trying to get him an appetite stimulant.

Trying to get ready for the new baby. Figuring out what we need and what we don't. Still trying to come up with a name. Any suggestions?

Preggo Pic: Week 22 and Sex Results

Halfway there! I'm really packing on the pounds but I supposes my doctor will give me the okay anyway. I'm pretty sure I was underweight to begin with and I actually lost weight during the first couple of months.

Baby is suppose to be about 11 inches long and really kicking. I can feel it and so can MrB.

I feel like I'm really carrying this baby low this time around. I've been forgetting how big I am and letting my stomach get in the way of things. Like I'm actually surprised that it's difficult for me to bend over and pick something off the floor.

I've had a few aches and pains, some in my back and some in my stomach. Nothing bad or consistent, so I just lie on my left side when it happens. Nesting, though not really suppose to show up until late in the third trimester, has really kicked in. I've been cleaning like crazy.

My lady lumps are getting up there. It's nice that I work at home because most of the time I let them run free. MrB doesn't mind.

And of course, what you've all really been waiting for are the results: boy or girl?

.............of course we're having a boy. And let me tell you, there isn't a doubt. Even I could tell that he had a turtle.

I love my boys and I know I'm just evening out the playing fields out there but I'm really not helping my home situation. I told MrB that means we have to get another dog... female this time.

First Pair

It's been awhile, I know. I pretty much took a break from all things Internet (except for the gaming around Christmas). Lots to catch up on but I'll just start with the latest... and the most adorable.



LilB now has glasses! It was so funny when we first put them on him (he hates people messing with his face, which is probably why at any point in time, you can see food on it). But once he opened his eyes from fussing, he look around, mesmerized. It was like he was seeing the world for the first time. And he laughed.



They aren't the cutest pair of frames ever, but our insurance only covers the metal kinds. With LilB constantly leaning to the side, we figured this might not be the best and most comfortable route to go. So we purchased, out of pocket, these rubber frames, to at least get him use to it and so we always have an unbreakable kind. We get 3 pair in a year, so if he does well, we may go back for the metal frames.

He makes them look good.