Sleep Study

Tonight you and Daddy are at the hospital where you are having a sleep study done. Basically, they will hook up an EEG, oxygen and heart rate monitors and video you sleeping all night. We originally had ordered this back in October when you were desating through the night often. But of course, as our timing so often goes, you haven’t had any issues in the last couple weeks. So while I don’t anticipate you doing anything interesting, I hope that something positive results from this.

Liam and I helped you and Daddy get settled, then headed back towards the car. As soon as we both were buckled in, I got this text from Daddy.

“Boo and Sue miss Roo and Two!”

These are our nicknames…I can’t remember if I explained to you how those came about, but I know I told Brother. Click HERE to read that post.

We miss y’all too. It is strange being home without you and not pulling meds, getting milk ready, listening for any signs of throwing up. I got some sweet goodnight kisses and smiles before I left, but it isn’t the same as right before lights out. But I am confident everyone will sleep well tonight. It was lights out at the hospital by 8:00pm. Daddy was looking forward to such an early bedtime. That’s a bad sign when you need to go to the hospital for a good night’s rest.

Off to bed for Mama. I love you and Daddy, and Bubba and I will be there early tomorrow to pick you up and take you both to breakfast!

Flower Power

Today we went to Sam’s to stock up on baby supplies. As we were checking out, a very cool looking older man was next to us in line. He was dressed like he was in his 20’s and as friendly as could be. He dropped a bouquet of roses while unloading his cart, and Daddy bent to pick them up. The following dialogue went something like this:

Man: (teasing) For me? (looking at me) Isn’t he sweet?
Me: (joking) Well, it would be sweeter if he was offering them to me!
Man: (to Daddy) Yes, why aren’t you buying her flowers?
Me: Because he is buying me a cart full of diapers and I would rather have those anyway.

You and Liam caught his attention and he flirted with the two of you a bit. We talked a tiny bit more, mainly about you. When Daddy finished checking out, we said goodbye and headed outside. It takes us what seems like forever to do just about anything, and as we were finishing loading you guys up, he walked up and slipped a bouquet of white roses into our empty stroller. He gave a tiny wave and walked off in the opposite direction. How amazingly sweet was that? I think you must have won him over.

I thought about that gesture for the rest of the day. God has grown in me a heart for generosity over the past year or so. But that was just a reminder of how simple it is to love on a complete stranger. It made my day, not because of the flowers, but just because of his kind heart. He must love Jesus. It renews my desire to find ways to give more abundantly, more freely, and more spontaneously.

(I wish I had taken a picture of the roses. I only have this one because Daddy is trying to find a new home for the kitties, and I guess he thought the flowers would increase Misty's chances of being adopted.)

That's gonna leave a mark...

Well the indentions are still there. And now they have scabbed up also. I began to worry we had permanantly scarred you, so today I tried to find information online. After a lot of searching, I came across an info sheet for patients about to undergo ambulatory EEG’s by a hospital in Philadelphia. Apparently the scabs are from blisters that pop up thanks to a lack of air touching the scalp for those 48 hours. And according to them, it may take up to two weeks for these marks to go away, depending on the thinness, sensitivity and elasticity of the skin. I expect yours to last at least two weeks. You, my sweet baby, do everything a bit slower than most. Which is ok with me. Take your time.

Ambulatory EEG

You went in to have an ambulatory EEG done this week. The goal was to catch you doing a “freak-out” so we could see exactly what is going on in your brain during them. So we went in Tuesday morning and began the normal EEG process. After all the electrodes were firmly attached to your scalp, the wires were plugged into a machine pack. This pack was larger than an older style flip phone and was placed on top of your head. All of this was wrapped securely in gauze around your head and under your chin. From the back of the machine came a thick black cord about two feet long, which plugged into another machine, this one larger than the first. This box was to be carried around with you the entire 48 hours.

This is certainly uncomfortable for everybody, but for you especially it was difficult. You have enough issues supporting your own head, but the added weight and balance of the machine really threw you off. I thought we wouldn’t have any problems carrying the box around since we are so used to doing the same with the feeding pump. But the pump gives us about 4 feet leash instead of half that, and it was very tricky trying to keep up with both at the same time. With a cord coming out of your head and another from your tummy, I felt like I was doing a juggling act for two days.
Probably as a blessing in disguise, you became sick Tuesday night. Actually you and I both became sick. Which is very strange since neither of us is ever sick. Except this week. Our throats hurt, we were exhausted and congested and had problems breathing. So Wednesday morning when I woke up feeling terrible, I asked Daddy to stay home. I expected you would need extra attention, not only because you were sick but also from being upset about the box on your head. If it was just you and I, I probably could have managed. We could have stayed in bed and snuggled and rested. But I knew there wasn’t any way I could take care of Liam (who doesn’t slow down for anything) and you while you felt the way you did, and while I felt the way I did.

Daddy sweetly stayed and I slept. When I woke up you were still sleeping. A couple hours later you were still sleeping. You slept until 12:30p which is not like you at all. When you finally woke up, you only lasted a short while before falling back asleep for a nap. I wanted you to feel well, but it was probably for the best that you slept through so much of the EEG. Of course it wasn’t an accurate sampling of a normal day for you and you didn’t do the freak out even once. But without that sleep, I think you would have been miserable.

This morning we headed back to the med center to remove the devices. You and I felt so much better. Our illnesses followed the same timeline, and it was great for me to know exactly how you felt for once—no guess work needed. When everything was taken off, you were left with red indentions on your forehead, and I am sure all over your scalp. I was told by the tech that they would pop back out in a half hour or so. As of now, they are still very visible. I sure hope she is right!

I will have to call the hospital early next week for the results. I hope they got what they needed, because we will not be going through this experience again anytime soon! I love you my tough, tough girl!

Setting You Straight

Today we went to get fitted for your foot braces. The technician who made your plaster molds warned me that the procedure was uncomfortable and that I should expect you to fuss. I told him I expected you to pleasantly surprise him. And sure enough, you proved me right. Not one little whine out of you throughout the entire process. You are such a brave girl!

I was given a book of patterns and told to pick out a print and strap color. I chose (no shock here) a plain pink mold with pink straps. When the tech told me the straps were “nuclear”, as in super blindingly bright, I was flippant, saying you would only wear them in your stander. He was under the impression you would need to wear them all day, every day. I am going to call Dr. W to see if that is the case, but I am hoping you will pleasantly surprise him again. You have too many cute shoes to wear! Just in case we changed the straps to a soft lilac color.

The braces should be ready in two weeks.

Sleeping Beauty

Look how cute you are in your big girl bed. I'll let you in on a secret though. You don't actually sleep in your bed the way you are in this photo. In fact, you look nothing like this. We fold down the blankets and put you in the middle of the bed on your side on top of a burp rag and blocked in by pillows. We have your suction machine nearby on one side, your feeding pump on the other, your foot hooked up to the pulse ox, mittens on, Lambie in the crook of your arm, recieving blanket draped over you. This is more accurate...

I am not sure this is the bedding we will keep. Originally I had decided on the Sparrow Lilac set, however it is a duvet instead of comforter. I would prefer a bedspread since I do make your bed each morning, and I think it would be much easier than trying to fluff the down comforter inside the duvet. But I think this sparrow bedding is precious! And it goes with the colors already in your room perfectly.

Blog Picture - 2 Years Old

Every year when you have a birthday, I update your blog header with a new photo of you and Lambie. In the past, you have always been sleeping in the picture, and I was trying to stage it to be the same for this year. But you kept rolling back, looking at the camera, smiling, talking. I thought about waiting until you were actually asleep, and then I realized, how silly! That is what is so fabulous about the blog! I can look back and see your progression from year to year--even day to day. And this year, you are a big girl who can be charming and engaging.

Terrific Two!

My big girl is TWO! We decided not to do a party this year. In fact, we hardly even did a family party. This week we are having problems with our A/C, so everyday we leave early in the morning and don't come home until late at night. But no matter. You didn’t know the difference and had a fun day regardless.


This morning you woke up laughing hysterically. I am convinced Jesus was telling you a silly birthday joke. I just sat and listened to you giggle over the monitor for several minutes before I came to join in on the fun. Later today we went to church to decorate for VBS. Honey showed up with these huge balloons for you! You are half the size of one flip-flop! Both you and Brother love them. Some other great gifts you were given from your family were a cute dress with stylish sandals, a beautiful bracelet, a Veggie Tales movie, a new changing pad (after two years yours was smooshed hard as a rock), your bedding, and two new things you can use with your adaptive switch. One is a jungle toy that spins and laughs when you press your button. The other is a desk fan that softly blows on you. You think both are hilarious.

Celebration

Ugh.

What am I going to do about your birthday party? I have always said that any birthday you have deserves a huge celebration. I know our years with you may be limited—which I realize is dumb because none of us are guaranteed tomorrow. But I am more acutely aware of it with you. So I want to go all out every year. But for the “Big Oh-2” as Daddy calls it, I have not done anything. All of my resources—time, money, creativity—are low. Part of me thinks we should just do a small family party. You won’t know the difference either way, so what’s the point? And then I think, the point is for me! And everyone who loves you! I was thrilled with the way your first birthday turned out, and the memories from that afternoon are so sweet. I think you deserve to be showered with attention and love one day a year. Plus, what if something happens this year and this birthday is your last? I will regret that out of your two birthdays, we only celebrated half.

I have a vision that I have fully fleshed out in my head, but have yet to put into action. I want to have an annual fundraiser for your birthday, in a carnival setting. We would build awareness for SLOS and have a blast at the same time. We would have moonwalks, games, petting zoos, small rides, cotton candy, popcorn, shaved ice, maybe a silent auction or raffle. Instead of gifts, people could donate money. Originally I thought all proceeds would go to the SLOS foundation, and maybe they still will. But then I thought how cool would it be to bless one special needs family—SLO or not—with a huge gift to help pay for medical bills, supplies, nurses, meds, renovations to make their home handicap accessible, whatever! We are so fortunate for our Medicaid. Without it we just could not make ends meet. A long time ago I did the math, and without any surgeries, procedures, or hospital stays, you cost at least $5,000 monthly. Not everyone knows about MDCP, and not all states are as generous as Texas. In fact, most other states give way less help or none at all. I have no idea how those families do it. I know God provides for them as he does for us, but I would love to be his hands and feet in this way.

Right now you wouldn’t think much of it, but my prayer is that one day you will be walking and talking, and when you are, your birthday bash will be waiting for you. And if we never got to that point, this annual celebration would be a wonderful way to honor you by helping others.

I think fear is what has kept me from pursuing this vision. I can see it in my mind, and it is huge and successful and fun. I am confident eventually we will get there, but it will take me a long time to build up the sponsors and donations to achieve my dream. I know that the reality won’t match my imagination for years to come. And it is the meantime I am afraid of. My party throwing confidence is minimal, and even though it may not be all I hope it will become, I still want everyone to have a good time while making money for a good cause. In fact, I had originally wanted to do this for your first birthday, but ran out of time. My plan was to start early in 2010 for your second birthday in June. But here we are. June. I procrastinate. And hem and haw. And wrestle over what I should do just two days before your birthday.

Maybe for the “Big Oh-3”.

Ugh.

Oxygen

You used to desat at night very often, and finally we ordered oxygen to keep at the house for whenever you drop below 92%. The night before the oxygen arrived, you stayed in the high 80’s. And naturally, ever since the oxygen arrived, you haven’t dropped once. Not once. Until last night. Right as Daddy and I were going to bed (because you have an AMAZING sense of timing), your alarm began to beep. After jumping from mid 80’s to low 90’s for about five minutes, we set up the O2 and watched it work like a charm. I sat by your monitor for a couple of minutes until you hit 95, and didn’t hear from you for the rest of the night. When you woke up this morning, you were at 100%. What a blessing to have medical supplies such as these on hand for nights like such as this.

Movie Madness

Today I had every intention of taking you to a movie with Aunt Shanna, Kyle and myself while we left brother home with Honey. As I am constantly reminding myself this week, you are a little girl, not a little baby, and a special movie with Mommy sounded like fun. Even though you wouldn’t understand the movie, I thought you would like the bright lights and gross sounds Shrek always delivers. If nothing else you would appreciate the hour and a half cuddling with no interruptions from Bubby. And I had no doubt you would sit quietly and not disturb the other movie-goers. Unfortunately you woke up feeling puny, and were not able to snap out of it before it was time to leave. I was disappointed, but knew that none of us would have a good time with you fighting off nausea. So I promise to try again very soon. I am going to look for a dollar theater to test it out for the first time. Even if we only get to see part of the movie before you become bored, it would be worth it. And then maybe that can be something special you and I do occasionally, just the two of us. And Daddy. We will always invite Daddy.

Upright

Here you are in your new stander! It arrived a couple weeks ago, but because we don’t yet have AFO’s (foot braces) you aren’t well supported enough to stand in it for very long. A few minutes here and there are fine to help get you accustomed to it, just so long that it stays in a partially reclined position. June 16th we have the appointment to be fitted for the AFO’s, and then nothing can hold us back!

I am blown away by how tall you are in this stander. When your tiny little self is curled up in my arms, helpless and fully dependent on me, it is easy to think of you as a baby. But every once in awhile, you stretch out just right, giggle so sweetly, or have a glint of understanding in your eyes that stuns me into realizing you aren’t a baby. You will be two next week. TWO!

I can remember this day two years ago perfectly. It was Grammy’s birthday and I was at Starbuck’s buying packages of her favorite teas. The young man who rang me up reached over the counter to rub my belly (yup, really) asked me when I was due. He was shocked by my simple reply of, “yesterday”. He didn’t know any better. “What are you doing out and about? Shouldn’t you be home in bed or at the hospital?” Good thing I didn’t take his advice. I would be bored crazy for the next 6 days until we induced.

This week will be an emotional one for me, just as it was last year. The memories are so fresh still, and as I have learned from other SLOS parents, probably always will be. And I wouldn’t have it any other way. Good or bad, I don’t want to forget a thing about any of our time together.