Tuesday, July 28, 2009

July 28

Today we went to Texas Children's to have an EEG. We won't get the results until probably Friday, but I have to tell you how cute you were the entire time.

To set up for the test, a wax pencil is used to make marks on your head for where the electrodes should go. You thought that was funny and laughed the whole way through. Then our technician just fell in love with you. We were almost finished putting all 23 electrodes on your head when you started getting cranky. It was naptime anyway, and you'd had enough. At that point she told me how she is usually pretty good about distancing herself from the kids who come in to see her. But that very rarely there is a child she just connects with, and it is those kids that make her job hard. She said you were one of those kids, and felt the need to tell me that her hands were shaking because she felt badly for making you cry and because she was anxious for your results, not because she was new at her job! I thought that was funny because I hadn't even noticed shaky hands.

I don't know what it is about you that people are so drawn to. Of course, I know all the reasons I love you so much. But even strangers who don't know your story (like our technician today) fall for you so easily. You are a beautiful, precious girl--every time you smile I tell you so. This happens so often that you have begun to associate the word "pretty" with smiling. I can say, "Where is my pretty baby?" and you will give me a big grin. But being honest with myself, I know you have characteristics that society doesn't appreciate. You hold your head awkwardly, have a bad eye that isn't properly aligned, and a "pug" nose that I can often see straight up. So I don't think it is your appearance that people are attracted to. It must be Jesus in you, giving you such a sweet disposition. Otherwise I can't explain why the people we pass while out stop us to talk to you, why doctors tell me that they go home and think more about your case than any other, why people who I only know because of you would do backflips to give you what you need.

When the test started you were such an impressive baby. The strobe light flashed in its different frequencies and I know must have been obnoxious to you because it was even to me. But you were very calm and watched like you were supposed to. Then we turned off all the lights so that you would take a nap. You had a different plan; after an hour you still wouldn't fall asleep. I was so surprised since it was way past your bedtime, but I think it was probably too quiet for your liking. You have slept with your ocean sounds since we came home from the NICU and without it you get fidgety.

So we finally gave up and started taking off all the tape and electrodes. Our technician was bracing herself for you to be upset when your hair got pulled. As always, you surprised the experts and didn't fuss even a little! She said in seven years you were the first! Such a strong baby girl.

After everything was out, your hair looked CRAZY from all the glue, tape and alcohol that was put on your head. Daddy and I had an interesting time trying to get you cleaned up!

Daddy said, "Mommy, next time wait till I am OUT of the bathtub before using the hairdryer!"

I think you knew how silly you looked.

Sweet, clean, sleepy-cause-you-never-took-a-nap baby!

Monday, July 27, 2009

July 27

This weekend was full of sweet moments for us.

On Friday Mama wasn't feeling well, and Daddy decided I needed a hug. He wrapped your arms around my neck as far as they would go and made you squeeze me tight. As soon as he did, you started laughing. Not just once, but over and over. Apparently a hug was what we both needed to feel better!

Aunt Paula came to town this weekend, and spent some time with us. You showed her your pretty smile and cute laugh and stayed up late to cuddle. She sure loves you a lot.

Yesterday Daddy and I went to Babies R Us to buy you a Pack n' Play. It was after church and lunch, about the time we all usually take our Sunday nap. You and Daddy sat in a glider together and rocked while I walked around for a long time and figured out what we needed to get. When I came back to find y'all, you had crashed in Daddy's arms. You haven't slept with one of us holding you since you were in the NICU. I think it was a special time for both of you.

You have known for several months now that you have a little brother on the way, even though I haven't written to you about him yet. As we were putting together your pack n' play, Daddy teased that we should just get another one for your brother instead of his own furniture. You started laughing--I guess you thought it was a good idea. Later that evening Daddy and I were talking about how we weren't concerned about The Boy stealing your attention, but you stealing The Boy's. You thought that was really funny too, and if I am not mistaken your face looked a bit smug. Silly girl. I know you are going to be super in love with your brother. I bet he will make you giggle all the time. And you two are already bonding. Sometimes you lay your head on my tummy and look like you are listening to something. Every once in a while you smile or laugh. I wish I knew what you too were talking about!

Wednesday, July 15, 2009

July 15

We went to see Dr. Kim today, and got good news--we are able to cut back on the dilations some more! Daddy has been probing your bottom ever since your ostomy reversal at the beginning of December--twice a day for the first 6 months, once a day for the past month. I did the math and that comes out to 423 times! So now you only need to be probed once every other day for the next two weeks, and then twice a week for the two weeks after that. Then we will see Dr. Kim again, and hopefully we will be able to stop altogether! Daddy is very excited. He hates being the bad guy.

You change your mind about which one of us is your favorite all the time. Lately it has been me, and Daddy thinks it is because he often has to do painful (or just annoying) things to you, but really, so do I. No matter what the reason, I think you are about to make the switch back to Daddy. Today when he came home you just started grinning and laughing. And he is just as ridiculously happy around you. The other evening I was taking a bath in one bathroom while Daddy bathed you in the other. After awhile he came into my bathroom saying, "Ahhh, look at her!" I immediately thought something was wrong--nope, he just couldn't believe how precious you were wrapped up in your towel. Then while he was getting you dried off, lotioned up, and dressed for bed I could hear him singing to you. (He didn't know I could hear him and stopped as soon as I turned off my water...) I can't remember what he was singing that evening, but he often sings you the same song when you are upset: "By Your Side" by Tenth Avenue North. You really like it when he sings to you. We put you to bed together that night, and I left after you were all settled in. Several minutes later I could still hear Daddy over the monitor, whispering to you in your crib and stealing more kisses. Daddy loves you so much, and you two are so cute together.

These are the lyrics to y'alls song, although he really only sings you the first verse and the bridge.

Why are you striving these days
Why are you trying to earn grace
Why are you crying
Let me lift up your face
Just don't turn away

Why are you looking for love
Why are you still searching as if I'm not enough
To where will you go child
Tell me where will you run
To where will you run

And I'll be by your side
Wherever you fall
In the dead of night
Whenever you call
And please don't fight
These hands that are holding you
My hands are holding you

Look at these hands and my side
They swallowed the grave on that night
When I drank the world's sin
So I could carry you in
And give you life
I want to give you life

(Chorus 2x)

Cause I, I love you
I want you to know
That I, I love you
I'll never let you go

(Chorus 2x)

Sunday, July 12, 2009

July 12

We finally had your birthday party and it was great! Our ice cream social was at church and over 100 people came to see you! Everything looked so cute, the ice cream was yummy, and we had fun seeing all our friends. We had quilt squares out for people to write or draw on, and they turned out beautifully. I am going to have them made into a quilt for you, and I think it will be so special. Best of all, you were in a great mood the entire time, and looked so pretty in your party dress, new barrette and birthday bracelets. I was afraid that without a long nap you would be cranky, but you did so well. I think you knew yesterday was all about you. And I loved getting to show off your cute little self.

You are all pooped out in this picture, waiting for us to clean up so you can go home.

Now all of our big summer activities are over, and for the first time in months you and I only have the usual doctors appointments, therapy sessions and house chores to keep us busy. So now we get to play!!

Monday, July 6, 2009

July 6

This weekend was our first 4th of July together! Well...not really, but it seemed like it since last year we just spent the day in the NICU. This year we did something fun and went to a pool party Saturday morning. It was your first time to go swimming, and you seemed to enjoy getting in the water! I am excited about that, because I think eventually the pool will be good physical therapy for you. My plan is to get you used to the water early.

Most of these pictures are good because the don't show the big scratch on your forehead! I wish I knew what happened--my best guess right now is that you clawed yourself up with those razors you call nails. At first I thought it looked more like a scrape, but I was with you all day Thursday when your owie popped up and I can't think of a thing that could have gotten you. Which makes me feel terrible. How can I stop it from happening again if I don't know what caused it the first time? But like most things, it doesn't seem to bother you.

Another thing that doesn't bother you is pulling your hair out. A few weeks ago you discovered the left side of your head, and have been playing with your hair ever since. I know you love that feeling, cause you laugh so sweetly whenever I put your hair up. By twirling your hair I think you are trying to recreate that sensation. But then your fingers get stuck and you yank them out, bringing a whole fistful of hair with you. It has gotten so bad that the left side of your head is noticeably more bare than the right, and has little scabs all over it from your nails (which I just can't seem to keep short enough--I wish we could trade!). These days I am having to put a mitten on your left hand when you are hanging out by yourself or sleeping, or I have to make you lay on your left side. Neither is ideal--ideal would be you cut that out. So we are working on the word "no". I have never had a reason to tell you no before, so it is kind of stinky to have to use a firm voice with you. But you are going to have to learn it eventually, and this is a good reason to start. I think that instinctively you know what I am telling you, because a couple times when I told you "no" and pulled your hand from your hair you cried like your feelings were hurt. Sorry Baby, but you will be grateful when you have a full head of hair!

Friday, July 3, 2009

July 3

Yesterday we went to the doctor and had a pretty good day. First we had blood drawn for a couple tests, and you were such a big girl. Then we saw genetics and got a great blood pressure reading. Often times we can't get a pressure at all, and if we do it is obviously too high and wrong. Next we saw Dr. Louis, our special needs pediatrician and got five shots. That was yucky, but despite everything you were such an overall happy girl. Lots of smiles, cooing, kissing.

When we first came home from the hospital almost a year ago, you occasionally would do this weird "freak out thing" as Daddy and I call it. You would throw out your arms, thrash your head, and make strange barking noises. Your mouth would go to the side, tongue come out, and it just wasn't pretty. My very first thought was that you were seizing, but it stopped as soon as I would pick you up. When I put you back down, you would start up again. Like clockwork. So I made a mental note to mention it to Dr. Louis, and chalked it up for the time being as temper tantrums or some sort of panic attack. They pretty much stopped, only happening once every few months, and they never made it to the top of my priority list to tell Dr. Louis. But this past Monday you started doing them again, and have done them dozens of times everyday since. After these little sessions your mouth is bluish, your face very pale, your breathing is shallow, your heart is racing, and you are exhausted. I was pretty confident after this week they were seizures again, but couldn't figure out why it was so selective. All I have to do is pick you up, hold you for a good ten minutes, and it is over. So yesterday I told Dr. Louis, although I never expected you would show her. But sure enough, when we left you alone on the examining table you started to "freak out". Dr. Louis immediately said she thought you were seizing, but when I showed her how picking you up snapped you out of it and putting you down started it over, she had no explanation for that. We all agree you aren't doing this on purpose--you are obviously frightened when it is over. And over the past week you have woken up several times during the night and naps doing this. Very strange.

So Monday I am scheduling an appointment with a neurologist. In the meantime we are going to do an EEG and MRI to check for seizure activity. I am really hoping that's not the case--I have seen what seizure meds do to kids and it is just not good. We don't need any help being lethargic and listless. And we are also going to get a pulse ox machine for overnight. The breath holding thing is the scariest for now, so while I can always hear you over the monitor, this machine will let me know if your O2 sat levels drop scary low.

Just when we think we are starting to have it all under control, huh? It's ok, we know we aren't really the ones in control anyway. God knows what is going on in that pretty little head of yours, and I am just not going to worry about this for now. Bedtime for Mommy and Daddy. Love you.