Saturday, January 29, 2011

Talking Tom

I just discovered you love the Talking Tom app on my iPhone. Tom repeats everything he hears, just faster and at a higher pitch. I downloaded it for Liam, who thinks Tom really is his pet cat. Every time Liam sees him, his face lights up and he yells “Hi!”—then Tom greets him back. They could talk forever. It didn’t occur to me until today that you would get a kick out of it too. So while I worked around the house, I set up my phone next to you and waited to see what happened. Of course, you thought he was hilarious. You can make him do things like drink milk or scratch the screen, or you can pull his tail, punch him, make him purr or cough up a hairball—just by touching the screen. These options make silly sounds and it is sensitive enough for you to do all by yourself. Ironically, you think it is funniest when he throws up the hairball. I thought you have heard enough of that sound for it to lose its charm. Maybe it is just funny that you aren't the one throwing up for a change.

I love that you can entertain yourself in this way. I am going to have to do some research to see what similar apps are available. We may have just opened up a whole new world for you!

Thursday, January 27, 2011

Brace Yourself

You have lengthened out quite a bit lately, but have lost a bit of weight. The result is that your legs are too thin and your AFO’s are too short for them to be effective. A “normal” kid will get new AFO’s every 6 months or so (it has been almost exactly 6 months for you), but I truly expected those to last you for a very long time. The technician who fitted you for new braces today thought I needed to adjust my expectations. I think she realized what I meant when she saw that your foot hasn’t grown at all. We were able to use your old braces to save a lot of time in making the new ones for that reason. We were finished in under an hour, and went on to see Daddy for lunch. Today is his birthday!

After a nice lunch with Daddy, Grandpapa, Honey and Liam (well, Liam got a little melty but everyone else was pleasant), we swung by TCH. I left you kiddos in the car with Honey while I ran up to Dr. L's office. She gave me a much needed new button for your tummy and some special wipes to hopefully help your bottom heal.

Home for quick naps and then we loaded back up to meet Daddy near the church for dinner before his meeting. It was a long but productive and fun day.

Tuesday, January 25, 2011

Stinging Sensation

Your bottom is so sore. It makes you cry so hard that you get phlegmy and then gaggy (although so far nothing has come back up). We have ordered No Sting Barrier Films from our medical supply company, but so far they are having a hard time getting us the right brand. They keep sending similar products, but it really needs to be the ones by Cavilon. When they say “No Sting”, they mean no sting. These other wipes are alcohol based and even say on the wrapper, “Will sting if comes in contact with open sores.” Well your whole bottom is an open sore.

I was so desperate to make it better that I made a mistake. I let your bottom air out for a bit today, checking you every couple minutes to make sure you didn’t need a wipe down. After about an hour, things looked a little better. At least your bottom wasn’t weeping or bleeding anymore. So I thought, maybe, since you were calm I could try a wipe that was sent and you wouldn’t react as strongly as you would if I were just changing your diaper and you were already upset. My reasoning was that often when you get shots or blood drawn, you don’t really fuss because it was fast and before you really realized what happened, it was over. And I figured if a little bit of pain each diaper change for the next couple of days saves you a couple weeks of pain down the road, it might be worth it. So I got out the wipe, opened it, and was hit by the smell of alcohol. I swiped it across your bottom quickly and waited for your reaction. It was delayed, but it when it came, it was big and loud and angry. And the stupid part was these wipes don’t even create the type of barrier the No Stings do. All that for nothing. I’m sorry Boo. I won’t try them again. We will call Dr. L and get a box of No Stings to hold us over.

Tuesday, January 18, 2011

Party Favor

This weekend we went to one of your friend’s birthday parties. Carson turned two! It was a Cars themed party and there were cute decorations, games and party favors. Liam got a hot wheels car and some yummy treats in a Cars sippy cup. They wanted to give you something you could actually use, so in your cup were these adorable jammies that say “Still a little sleepy”. I was so touched by their thoughtfulness. We would never EVER expect customized party favors for you. But it was the unexpectedness that made it so sweet. Thanks Carson, happy birthday friend!

(This, by the way, is not a cute picture. We had just taken your contacts out and well...sorry.)

Sunday, January 16, 2011


Lately you have been so vocal. You happily chatter away with me during the day when you feel good. And when you don't, there is no mistaking it. You fuss and cry until something changes. Overall you are still super tolerant. But a car ride will set you off every time (I have no idea why other than maybe it hurts your bottom) and if enough time passes without you getting attention you let us know. Which is really good progress. It is important for you to tell us how you feel and what you need.

Thursday, January 13, 2011

iPhone Fun

Audrey! Daddy and I just received our birthday iPhones and immediately I discovered your blog can be updated from here! This will go a long ways in helping me keep my new year's resolution. Awesome.

On a sadder note, the blog design really looks wrong on here. Guess you know what we will be working on tomorrow.

Congratulations on being my first iPhone task! Besides calling, texting, emailing, face to facing, and photographing Daddy (all while he was sitting next to me on the couch).

Wednesday, January 12, 2011


Daddy is taking the rest of the week off for a mini vacation. The original plan was to take some time off between Christmas and New Year’s in Galveston. They have the Festival of Lights which I thought you and Bubby would love. But since everyone got sick, it wasn’t worthwhile. This week, nothing fun is happening in Galveston so I thought about going to San Antonio. There is a fabulous special needs amusement park called Morgan’s Wonderland. Everything there is completely handicap accessible. I know you and Liam both would love it. Then we could have spent a day at Sea World (one of Mama’s faves) and a day at the zoo. Unfortunately, Morgan’s Wonderland and Sea World are both closed until early March. So those will have to wait a couple more months and a “stay-cation” it is.

We dropped Liam off at school this morning and headed out to get some things done, just you, me and Daddy. Like the old days. We went to Starbucks and visited a long time. We didn’t have to chase anyone around, so we were able to just sit and hold you. Then we exchanged some things at the store, saw Aunt Shelby and Papaw at the office, and went out to eat before we picked up Brother.

Daddy and I used to do everything together. Any little chore--pick up dry-cleaning, fill up on gas, run to the store for a couple items for dinner, rent a movie—we went together. When you were born, it just didn’t make sense to pack you up when one of us could go and be back before you were ready. While you are worth the sacrifice, we miss doing those little things together. But now being used to packing up two kids, I feel like it takes us no time to get either of you out the door. Plus, I think we are getting faster, or you are getting easier, because it just doesn’t seem to be as big a hassle anymore. So Daddy and I enjoyed spending time together getting the mundane things done. But we also missed Liam and were happy to pick him up when school was over. He might a lot of work, but he sure is entertaining!

Tuesday, January 11, 2011

Pardon Our Dust

I was trying to revamp your blog, because I want the columns to be wider. In order to change the width, I had to change the design. It used to be pink with white dots, and a brown fringe on the sides. Very sweet, very you. This time I picked a cute bird design, ideal for a little girl. It reminds me of your sparrow bedding and it still has your colors (pink and brown). Plus it is called "Happy Chick". Perfect!

I really hate blogger. One of my best pieces of advice to you...go with Wordpress.

Somehow, after fidgeting and tweaking and adjusting, my columns came out MORE narrow. It goes without saying that this is not my area of expertise. But I am tired and I can hear my bed calling my name (or maybe that's Daddy). So for now, your blog is under construction.

Remember: Wordpress.

Sunday, January 9, 2011

Milk...It will do your body good!

We started a new formula today called Elecare. It is supposed to be even more gentle than Neocate, and is made for someone over the age of one. Your Neocate is designed for infants and you just need some bigger girl food. The hope is that you will tolerate it better, we can up your daily caloric intake, and you can grow and thrive. At your checkup this week you weighed in at 15.91 lbs… with all your clothes on. And a dirty diaper. Girl. We have got to plump you up. Praying this is a step in that direction!

Here are your current growth charts. They are a little light, but we can make out the important parts.

Your head circumference actually makes it onto the chart, thanks to your hydrocephalus. It is still less than 3 percentile thanks to the microcephaly. (Ignore the obvious outliers...although you may prefer it, your head has not shrunk).

Here is length. Definitely still less than 3rd percentile, but you follow your own little curve quite nicely. (Again, you haven't ever shrunk. Length is particularly hard to measure on you since you ball up as soon as you get on the table).

Weight. See those tiny black dots on the very bottom left hand side? That's you, nowhere near on the chart. Tiny little shnook.

Friday, January 7, 2011

Routine Check-Up

Hi Sweetness.

Yesterday we went to see Dr. L with Honey, and of course Liam. This is the first time we have seen Dr. L in 6 months! Truly amazing. It was a later appointment, supposed to start at 3:15. She had an early morning admission which set her behind all day, so we didn’t get to see her until closer to 5. But Dr. L is worth it. She really takes the time to sit, go over all of our issues, write the orders for all the tests, and supplies, and scripts. I feel like everything has been covered by the time we leave, and never feel rushed.

By the time we were finished the CCC side of the hospital was shutting down and we couldn’t get those tests she ordered taken care of. We will need to go back one day soon to have X-rays of your hips done, a new G-button, and draw blood for a cholesterol test. You did get two shots—flu and a routine immunization. As always you were as tough stuff. And, may I just say, beautiful.

Here you are right before we headed out. Mema bought you bows in each color for Christmas. Your hair is getting so long and curly!

Wednesday, January 5, 2011

Girl Time

Last semester, we all did Mother’s Day Out. I taught in the baby class with you and Liam for awhile, but Bub was driving me crazy with his clinginess, so we moved him next door. This semester, we decided it would be best if you and I stayed home while Liam goes to school. We all needed this.

I needed to miss him during the day.

He needed to socialize with friends and other adults.

You needed me all to yourself for a bit.

From the moment we dropped him off, you were jabbering away. I think you knew it was just us. You sure do love your brother, but everyone needs a break occasionally. We ended up running around with Aunt Shelby for the day, and you were ok with that. Your great mood carried over to the evening where you signed “mama” and “dada” repeatedly and told us everything on your mind.

Next week, I plan to bring you home while Liam is at school and work on stretching, standing, sitting, reaching…basically have PT/OT boot camp until you need to take a quick nap and we go pick him up. So rest up…my MDO’s are going to be your major workout days!

Saturday, January 1, 2011


I made only one resolution this year. Keep up with your blog (and Brother’s). Daddy is supposed to help keep me accountable.

So far, so good.