Baby Bowers Three

You are such a great big sister. How about another sibling?

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Mrs. Tamara

We were disappointed to find out that today was our last OT session with Mrs. Tamara at ECI. We have changed VI, PT and case coordinators several times, but Tamara has been with us from almost the beginning. When the program was rezoning therapists, Mrs. Tamara refused to give you up and traveled outside her territory in order to see you each week. Lately you have been fussing during OT because she makes you work hard, but I’m glad she pushes you. At the same time, she always respects your limits and feelings. And you don’t hold it against her--you love Mrs. Tamara! You are always glad to hear her voice the next week. Mrs. Tamara has had many great ideas over the last two and a half years for new ways to position and engage you. She thinks outside the box and notices things about you that I sometimes overlook. As Mrs. Tamara left we all held back tears—after two and a half years visiting our home, she has become very dear to our family. Sad as we are to see her go, I am certain we will keep in touch. We love you Mrs. Tamara!

Cuddle Bugs

You and your brother have been so cute together lately. Today I tried to convince Liam to be still and watch a video for a bit. You and I curled up on the bed and I trapped him in the pack n’ play. That didn’t last long before he kept asking to be put “down, down”. So I released the beast and he ran around my room for several minutes. Eventually he came back to us and asked to be put “up, up”. So I hoisted him on the bed, and he cuddled up right next to you. This suited you perfectly. You always love being close to Liam, but he almost always is a whirlwind of activity. We are never surprised when playtime ends with you crying, either from being startled or a minor hurt. But since he was in rare form this afternoon, you were able to reach out to touch his face. He was in the TV trance for a while, but when he eventually looked over to see who was petting him, his face lit up and he said, “Sissy!” He may be rough sometimes, but Liam really does love you.

Sittin' Pretty!

We are trying out a new headrest for your chair. It cradles your neck more allowing you to sit straighter while doing more of the work yourself. We need a few adjustments already, but so far you like it!

And look at your ponytail! I never put your hair up like this because you usually have your head flat against something (floor, headrest, carseat) and it immediately gets messy. I jumped at the chance to do a ponytail today and thought you were super cute!

Party Planners

You and I have been working hard this week planning your birthday party. It’s going to be super cute and fun…I can’t wait!

Daddy and I are also planning a surprise trip somewhere special. We did an absolutely crummy job celebrating your birthday last year. We didn’t even have a small family party. So this time we are making up for it. Every year we have with you is a miracle. We need to party and praise God!

Happy Girl!

You have been so happy lately. No vomiting, lots of talking, reaching and laughing. When you feel good, it makes us all feel good!

And all this with your SPIO on…so clearly that wasn’t the problem last week.

Get glad in the same suit you got sad.

Well I thought you loved your SPIO suit. But the last two mornings you have been in a terribly sad state. It seems like you are hurting but I can’t figure out what it could be the cause. Yesterday OT was over, and we thought maybe you just didn’t want to work (you did the same thing last Thursday). After Mrs. T left you didn’t immediately calm down. Holding you didn’t help, swinging you didn’t help, nothing helped. Since you were going to cry loudly no matter what I did, I took off your SPIO suit and put you to bed. You cried another 10 minutes or so and fell asleep.

Today it was same story, second verse. Only this time, no OT beforehand. I eventually took off the suit and laid you down. Surely the compression suit isn’t the problem. You love being squeezed! Maybe you aren’t sleeping well at night and are just exhausted. If it happens again tomorrow I will try putting you down with the suit and see what happens.

We need to get you some communication Girlie!

New Gear

This is your SPIO. It is a compression suit that is supposed to help with body awareness and give you a little support as a very soft back brace. It goes on first thing in the morning under your clothes. You love it and I think it is super cute. To me it looks like a swim Speedo or a gymnastics leotard. Since we have had it, you have been talking more and sitting much straighter in your chair and carseat.



This is your Hensinger collar. We do NOT love this. I think it looks like you are participating in a muster drill. It restricts your movement and is called a collar. How tacky. It is supposed to keep your head forward when sitting. Good in theory, but I think it is too small. I will see if we can go back once again and get a larger one. We are at that orthotics place every couple weeks!

Renal Results

The ultrasound was abnormal—you still have small kidneys. They are growing, but it sounds like not quite enough to keep up long term. One kidney (left?) was 3.7 cm at birth and is now 5.1 cm. The other (right? I can’t remember) was 3.9cm and is now 4.9cm.

The good news is that your labs came back normal, meaning you have plenty of function for now.

So fiddle-dee-dee. We will think about that next year--at your follow-up.

First...ehhh...Third Mother's Day

Today you and I ran into the grocery store for a couple quick things. As we left a lady said to me, “Awww, a fresh new baby, just in time for Mother’s Day. Congrats Mom!”

I said, “Uhhhh, this is my THIRD Mother’s Day with her. Fourth if you count when I was 37 weeks pregnant with her. But thanks for that.”

Haha, just kidding. I would NEVER say that! The infant carseat is very misleading. I just said, “She’s my sweet girl, thank you!”

But you and I did laugh to ourselves.

Mother's Day Gift

You had vision therapy today and you did some more artwork. She likes art for you because it is so tactile. With Mother’s Day coming up, you made me a pretty picture frame for the fridge.

It actually was very sweet watching you “make” it. Mrs. Mary Beth directed your hand into a bag of pom-poms, die cuts, buttons and such. She told you to pick out something pretty to go onto the frame and you did just that. Once you felt your hand touching something, you closed it into a fist and pulled it out. You selected a few pom-poms, a couple hearts, a moon and a dinosaur looking guy. I put it right up on the fridge around a picture of you from our New Year’s card, 2008!

That photo has been on our fridge ever since it was taken at 6 months old. At that time, I had lost patience over waiting to see you smile. Since your ptosis had not been operated on and you had not received your contacts yet, you truly had no concept of what a smile should look like, or what context we use them in. I decided you were going to learn. So I would just tell you, “Smile Audrey” while holding the corners of your mouth up. It took you less than two days to before you understood what I wanted you to do when I said “smile!” You didn’t know why, but you knew it made me happy.

It wasn’t always an immediate response. Often I would ask you to smile and then have to wait minutes for your ears to hear, send the message to your brain, your brain to process, send the message to your mouth and your mouth to respond. Daddy would give up and turn away—I would grab his arm and not let him move because I knew it was coming. And it always did. It didn't take long for you to realize the appropriate times to use that smile, and you were able to show us that you are such a genuinely happy girl.

You are such a smart chickadee, trapped in a body that doesn’t let you show it. I shouldn’t say trapped. That sounds so melodramatic and not at all how I mean it. We just need to figure out how to make that cute little body of yours cooperate a bit!

Anyway, thanks for my Mother’s Day gift! I loved it and I loved watching you create it. Oh, and I love you.