Dancing Queen

This evening you, Daddy and I had a boogie session in the kitchen. We played the iPod and put the wheels on your chair to good use. We twirled you in circles, shoved your chair across the room to one another, rocked you back and forth. We clapped and snapped and helped you move your arms to the beat. You loved it. We loved it. Until Daddy got a head butt and was down for the count. One of us was bound to get hurt—that’s how most our fun ends. We just get too excited and silly and (apparently) uncoordinated. At least we laugh through the pain.

Improvements

Your special chair is awesome, and we are so grateful it allows you to be upright and supported. One drawback however, is that there is no place to put your feeding pump. So the challenge is maneuvering your chair and your IV pole at the same time. Both have wheels, but both get a little squirrely and want to go their own ways, especially on the carpet. So I asked The Wheelchair Shop (who ordered the chair and does the modifications) if there was an attachment. They looked into it and told me there was, but it wouldn’t be fully funded by Medicaid. The WC Shop would have to order the pole at a cost of $400 (which is absolutely outrageous to me) and Medicaid would only cover $100 (much more reasonable). But that would leave the Wheelchair Shop with a $300 loss on their end. So I resigned myself to either paying for it out of pocket or making it work as is. I chose to make it work for now.

Well today, Matt from The WC Shop came over with a pole and attached it to your chair! I am still not sure how they got it funded, but apparently they kept at it and were successful. I am so appreciative that they didn’t easily give up. Unfortunately, it isn’t often I find a company or organization that goes that extra mile for kids like you. Logic would lead one to think that people who work with special needs kids would have a heart for them, and a desire to help them as much as possible as quickly as possible. It just isn’t so. Much more often the people we deal with are cranky, slow and incompetent. This experience was so refreshing. It isn’t a huge deal for us to have this pole. We could have survived without it. But it simplifies our life just a bit, and I am so thrilled to be blessed with it!

Along the same lines, I received a letter today from the DADS office stating we have been given a new caseworker for the MDCP program. I cannot express how relieved I am by this news. Our former caseworker was just plain ugly. She was the one I caught in a number of lies so that she wouldn’t have to help us. She was the one who held onto our application for an extra 60 days which caused us to pay for 2 major surgeries out of pocket. She was the one who I would call and call and call again over the course of several weeks, and when she finally returned my messages her standard line was, “Look, your kid isn’t the only kid in Houston with problems” with as much attitude as she could muster. She was the one who made me so angry over the phone once, that I was literally shaking and when I hung up to call Daddy, I burst into tears. She was the one I eventually refused to speak with and so Daddy had to do all the dirty work. My understanding was that she was hired to be our advocate. She was much more an adversary. I asked on multiple occasions to be assigned a new case manager, but was told the assignments were by zip code and nothing could be done. This was one benefit in moving for us! It is still on my “to-do” list to write a letter to her supervisor, outlining the issues we have had with her. I never got around to it which is a shame; I am sure she treated all her other cases the same way she did us. And my guess would be those other families have about the same amount of time to dedicate to those tasks as I do. I just have to pick priorities. If the choice is between spending time with you, Daddy, Liam, updating your blog, getting bills paid, making dinner, scheduling doctor appointments and filling scrips or sitting down to write a complaint letter, I have to choose the former.

I am so excited to find out we have someone new. I am praying that she is more pleasant and knowledgeable, and that this attitude isn’t the corporate culture there. I have spoken with two other ladies in the same office—one was very kind and helpful. The other was more like our case manager. But whoever it is, she must be an improvement.

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.