Tuesday, February 21, 2006

Baby Sign

Since D's developmental assessment at Hollyridge we have been really trying very hard to sign to her as much as possible. Well, since her visit, she has accomplished four signs. She can sign for "cookie", "cheeto", "all done", and "eat". Her signs are real document signs, but they are what works right now for her and for us. I'm trying to teach her "kiss" today.

Wednesday, February 15, 2006

Feeling Guilty...Taking Care of Yourself - Part Deux

Is it bad that I would LOVE to be able to check into a bed and breakfast somewhere for a night all by myself? I love D and DH with all of my heart, but the thought of being alone and without responsibilities for even a milisecond is exhilerating.

Google Hits

So far I've received two google hits. One was for "baby developmental assessment" and the other, as talked about below "cerebral palsy constipation massage". I'm hoping that people use me for a resource if I have the information. So, if there is something you are wondering about, having issues with yourself, etc. etc., please don't hesitate to ask. If you have the question, someone else probably does, too.

Cerebral Palsy and Constipation Update

I received a google hit for "cerebral palsy constipation massage" so I thought I would post an update about D and her eternal bout with the dreaded constipation. I have been doing my best to up her fiber intake with lots of graham crackers and also be sure to give her some fruit or veggies with every meal. Whereas she only pooped once or twice a week at best last week, this week she has pooped three times since Sunday night. So, maybe we are one to something. I have said that before regarding D's constipation though and she has gone right back to her once a week poop cycle.

Sunday, February 12, 2006

To the Zoo!

On Saturday, the family went to the Port Defiance Zoo & Aquarium. We received an annual family pass so when the first beautiful day presented itself, we decided to take advantage of it! She has been to the Woodland Park Zoo in Seattle, but this was our first trip to the Port Defiance Zoo & Aquarium. D was so cute and really into the animals. Her favorite exhibits were the ones where should could see below the water, such as the shark tank and the beluga whales.

Friday, February 10, 2006

How Old?..

D and I were in Burger King this morning getting breakfast for papa and grampi who were working on the new rental and the nice young woman behind the counter asked..."how old is she?". This unsuspecting question which for most people wouldn't mean anything except a quick, perky reply. I cautiously say, "16 months" and it is like all of the heads in the building turn towards us. "But she is so small!" Well, yeah, she was born weighing one pound twelve ounces, so we're still catching up. And then the ubiquitious, "Is she healthy?" "Is she walking?" How do you explain to someone that your daughter is healthy but that she has cerebral palsy? That she is in therapy to help her do things that other babies find so easy? Thank god she didn't ask what D's "outlook" is, because how do you tell someone that you just don't know?

A funny moment to share....

Yesterday D had therapy at Mr. Larry's. Unfortunately, Mr. Larry had surgery recently (but is recovering well) so Johanna gave D her therapy that day. They worked a lot on crawling and at one moment, Johanna looked up at me and said D is very gassy. And the next moment...and very smelly.

Even in these moments of work and sweat, etc. there are still moments where everything is funny, even if for just a second.

My first link....


There is a bevy of good blogs out there to read and this post (including a link to yours truly)links to a few of them. Both caregiver and patient blogs.

There is good and personal information about there about a ton of different diseases...sometimes it just takes wading through the mass of information to find the good ones.

Thursday, February 09, 2006

D's favorite new toy....

Is a big buttoned calculator. It is her newest best friend forever toy.


Actually, wasn't so much of a review as a looking at and updating D's family plan. We checked off lots of things having to do with her right hand and added more having to do with both movement and communication. We have another six months to accomplish unchecked points. The biggest surprise came from the communication points. I've always thought D was pretty darn good at communicating, at least I understand her most of the time. She is a pro pointer. So, I think they are going to evaluate her speech and see if she needs therapy in that aspect as well. We are working on signing with her now, too. I don't think she will be nonverbable, but the goal is to get her saying or signing 10 words in six months.

We go in March 1st to the University of Washington for another review...this one will be much bigger and comprehensive.

Monday, February 06, 2006

Developmental Review Tomorrow

D has a development assessment tomorrow at Hollyridge. These things are such a mixed blessing to me since they are to try to pinpoint exactly what is wrong and what D isn't doing yet. However, by determining those things, she gets the therapy that she needs...or at least put on a waiting list. I really do like Hollyridge, but I get a bit disillusioned by them as well. Before we were able to get therapy services with Diane through the Elks, D was on Hollyridge's waiting list for over six months. Also, Hollyridge has been in talks with all of D's therapists and when Diane came over on Friday, I learned that one of the developmental teachers at Hollyridge thinks that D may have eating issues. She got this solely from me "complaining" at class that D is a picky eater. I wish people would talk to me and get clarification before they start making assumptions. D is a bit of a picky eater, but she loves to eat and she loves food and she in no way has an oral sensory issue. I have a feeling tomorrow may turn into a battle and I'm really REALLY dreading it.

Cerebral Palsy Resources

I'm hoping to start compiling a list of links to informational resources and other blogs or sites to people dealing with cerebral palsy. I'm really quite tired of looking for information on cerebral palsy and being mislead to visit a site promoting legal actions. I know some people have good reasons to pursue that route, but it is not my family's recourse. So, if you know of a good, please send it my way! I created a section over on the righthand side of the page to list them once I find them.

Sunday, February 05, 2006

Taking care of yourself


I read this post about caregivers of people with chronic illnesses (and I'm assuming that it applies to those of us with children with disabilities as well) and it really struck home. We put so much of our time, efforts, and energies, into taking care of our "charges". For D, we are running around to therapy appointments and working on things at home. I go through the paces everyday (shower, teeth, etc.) but the thoughts of me going to a doctor for a physical....never even occurred to me. I am going to have my husband check my blood pressure today as it hasn't been checked in months. I do have an appointment mid-february, but I'd like to be aware if the preeclampsia has left a remaining impact on me. My bp wasn't high at the last check, but I do need to be more aware of this.

Friday, February 03, 2006

I'm so tired....

I'm so tired of being told what my daughter CAN'T do, instead of celebrating what she CAN do. I understand the need to push to achieve her fullest, but she is totally awesome and I love her.

My child is not a label

By Denise Ulman, denise@springmeade.com
June 1999

My child is not a label

My child is a person in their own right.
My child is a breathing, thinking, loving human being.
I have accepted that you need to assign labels, but only
because the labels may help to explain my child's differences.
That does not make my child that label, and that label makes
my child no less a person than any other person on this earth.
Do not look at that label first, look at my child first.
Do not try to understand my child by only that label.
Look further to understand my child by gazing into my
child's eyes and listening to what my child has to say,
no matter what form my child's communication may take.
My child may not communicate in a way that you understand,
but that does not mean that my child can not communicate.
It may not always be easy to understand what my child
has to say, but if you persevere you will find the effort
well worth the reward of getting to know my child.
Forget the label and let my child teach you who he/she is.

Denise Ullman and friends

Thursday, February 02, 2006

Larry Thursday

Mr. Larry lent D an old fisher-price house thing which she absolutely adores! It is so fun watching her open and close the roof, open and close the doors, and play with the little people.

Today, we continued at working on kneeling with D as well as pushing her tush up off of heels. We are also starting to work on standing and he is saying to encourage walking and having her hold our fingers.

He also fixed her hand splint for me as there was a medal grommet thing that had gotten bent and was digging into D's hand. He put a nice cushy piece of moleskin in there, too.

D is getting better dealing with being handled by Larry, too. She started out on pretty shaky grounds with him and we had one pretty horrendous session, but it has been uphill since then. He really is one of the most patient therapists we have dealt with.