Monday, September 13, 2010
Love My Cleft!
It has been almost two years since we have seen the plastic surgeoun about your cleft palate. Dr. S wanted us to come back when you hit 15 pounds, and we are finally there! He took a super quick look in your mouth today and was ready to schedule the surgery. I wasn’t as ready. I explained how you vomit daily, and can’t swallow or use your tongue to manipulate the fluid out of your mouth. There are many times when you throw up such large quantities that fluid is pushed up through your cleft palate and out your nose. I have come to think of that as a safety valve. You have never gotten sick from bacteria growing in there. Being in the soft palate rather than the hard, it doesn’t interfere with your suck/swallow, and it doesn’t seem you will be talking anytime in the immediate future. After hearing me out, Dr. S agreed that as of now, there is no reason we need to close it up. We are all completely comfortable with letting your hole stay as it is and save you a surgery. If anything changes and we decide it is necessary, the door is open and we can get it repaired quickly. This is great news!
Thursday, September 9, 2010
Just Peachy
We have been working a teeny tiny bit on eating orally. Mainly just when Mrs. Tamara is here. So this morning we gave it another try, and this time you tasted Bubby’s peach flavored yogurt. Mrs. Tamara put a few dabs around your upper lip, and you managed to suck a bit off and swallow it down. After a couple tastes you started doing your usual coughing, gagging bit. We figured it was just because you didn’t want the yogurt in your mouth or because you were getting caught up on some mucus. After a few more minutes your cough started sounding very croupy. And that’s when it dawned on me. You were having an allergic reaction. Croup sounds the way it does because the airways become inflamed. I realized yours must be swelling. I grabbed you up, took you into your room and attached your pulse ox monitor. Your heart rate was almost 200 and your oxygen level was in the low 90’s/high 80’s. I looked you over a little closer and saw your lips were swelling also. Goodness.
Thankfully, we have the monitor so I knew exactly what your stats were and didn’t have to play guessing games on whether you were getting enough air. I have oxygen on hand, although we didn’t need it, and an epi-pen for last resort. They don’t make epi-pens for babies your size, so the one we have is too large of a dose. Still, if you ever aren’t breathing at all, we will take our chances with an overdose.
I am so sorry you had to go through that again. It doesn’t make eating seem super appealing, I am sure. I wish I knew everything you were allergic too. The strange part is that you haven’t ever had yogurt OR peaches before. In order to have that strong of a reaction, you usually need to have been exposed to the food previously. And it was such a miniscule “bite”. We will just have to practice eating with your formula from now on. It isn’t yummy, but at least it’s safe.
Thankfully, we have the monitor so I knew exactly what your stats were and didn’t have to play guessing games on whether you were getting enough air. I have oxygen on hand, although we didn’t need it, and an epi-pen for last resort. They don’t make epi-pens for babies your size, so the one we have is too large of a dose. Still, if you ever aren’t breathing at all, we will take our chances with an overdose.
I am so sorry you had to go through that again. It doesn’t make eating seem super appealing, I am sure. I wish I knew everything you were allergic too. The strange part is that you haven’t ever had yogurt OR peaches before. In order to have that strong of a reaction, you usually need to have been exposed to the food previously. And it was such a miniscule “bite”. We will just have to practice eating with your formula from now on. It isn’t yummy, but at least it’s safe.
Tuesday, September 7, 2010
Audrey Skywalker
Somehow, I have gotten through my entire life without watching any of the Star Wars movies. Daddy decided he needed to remedy that. So we bought all six, and have watched them over the course of a couple weeks. I have to say, I really enjoyed them! But not nearly as much as you did. You laughed your entire way through both trilogies. The lightsabers, ship fights, droid, Wookie and Ewok sounds…these movies were made for you! I have a feeling it won’t be too long before Star Wars has an encore showing in the Bowers’ home theater!
Wednesday, August 25, 2010
Not a Ninja
I learned a new game called Ninja this summer, and it is one of my new faves. Basically it is a sophisticated hand slap game. Daddy and I were playing in the kitchen tonight, waiting for dinner to be ready and he got me. I screamed, only because I scream every time I lose—I don’t usually win, but still it catches me off guard. You were sitting at the table in your special chair, and out come the pouty lip and tears. Sweet girl. You thought Mommy got hurt and it scared you. It took a little while to soothe your hurt feelings. As tough as you are, you can be pretty sensitive. It just goes to show how aware you are though.
Monday, August 23, 2010
Getting Better All the Time
You have been doing so great lately in many areas!
*Socially. You are quite the talker. Especially at night and nap time when you don’t want to go to bed. Now, for example.
*Holding things. Tightly, and with both hands! While in your car seat, you are constantly grabbing the cord to your bag and shaking it around. You often grab your switches while sitting in your special chair and try bringing them to your mouth.
*In fact, you bring a lot of things to your mouth. And you allow Mrs. Tamara in there during your OT sessions without getting very defensive or gagging. A few weeks ago you even let us squirt some milk in your mouth and you worked hard to swallow it. That is incredible progress considering we haven’t been working on oral stim at all.
*Mobility. Still not rolling again. But you are managing to pivot in circles while lying on the floor.
*Visually. I can tell you are making more of an effort to get a good look at things, even if it means you have to hold your head in an uncomfortable position to do so.
I am not the only one that has noticed your improvement in these areas; others have mentioned to me how well they think you are doing. You are the super girl!
*Socially. You are quite the talker. Especially at night and nap time when you don’t want to go to bed. Now, for example.
*Holding things. Tightly, and with both hands! While in your car seat, you are constantly grabbing the cord to your bag and shaking it around. You often grab your switches while sitting in your special chair and try bringing them to your mouth.
*In fact, you bring a lot of things to your mouth. And you allow Mrs. Tamara in there during your OT sessions without getting very defensive or gagging. A few weeks ago you even let us squirt some milk in your mouth and you worked hard to swallow it. That is incredible progress considering we haven’t been working on oral stim at all.
*Mobility. Still not rolling again. But you are managing to pivot in circles while lying on the floor.
*Visually. I can tell you are making more of an effort to get a good look at things, even if it means you have to hold your head in an uncomfortable position to do so.
I am not the only one that has noticed your improvement in these areas; others have mentioned to me how well they think you are doing. You are the super girl!
Tuesday, August 17, 2010
Shunt Success
So far your shunt is working like it should! The ventricles in your brain look about the same as they did last time we took a look, which is what we want. If everything goes well and we have no reason to suspect something is wrong, we won’t go back for another year.
As we loaded onto one of the elevators today, we saw and briefly spoke with Dr. K. It was a good reminder for me to schedule a follow up on the colostomy pull through. I can’t believe it has already been that long since we have seen him. Last September when he first told me that we didn’t need to come back for 12 months, it sounded so far away. And here we are, almost September again. It has been almost TWO years since the colostomy was reversed. Already I can barely remember those days of changing your colostomy bag. Unless someone asks me about your scar, it never even crosses my mind.
Unfortunately, hydrocephalus will always have to be at the back of my mind. 50% of shunts malfunction within the first two years of placement. Some symptoms are blurry vision, headaches, irritability, sleepiness, lethargy—none of these will be easy to spot on you. So I will need to keep a sharp eye out for regression in skills and a change in character. And when in doubt, check it out!
As we loaded onto one of the elevators today, we saw and briefly spoke with Dr. K. It was a good reminder for me to schedule a follow up on the colostomy pull through. I can’t believe it has already been that long since we have seen him. Last September when he first told me that we didn’t need to come back for 12 months, it sounded so far away. And here we are, almost September again. It has been almost TWO years since the colostomy was reversed. Already I can barely remember those days of changing your colostomy bag. Unless someone asks me about your scar, it never even crosses my mind.
Unfortunately, hydrocephalus will always have to be at the back of my mind. 50% of shunts malfunction within the first two years of placement. Some symptoms are blurry vision, headaches, irritability, sleepiness, lethargy—none of these will be easy to spot on you. So I will need to keep a sharp eye out for regression in skills and a change in character. And when in doubt, check it out!
Friday, August 13, 2010
Cholesterol Lows
We got the results back on your cholesterol test. Good news is that your cholesterol has doubled! The bad news is that it is still lower than anyone would think possible. 7.7 mg/dl. None of your SLOS friends even have numbers that low. Strange thing is that your 7-DHC is also up a bit to 116. Here’s how it should work in layman’s terms, best that I can understand:
7-DHC is a basically a precursor to cholesterol. The normal range would be anywhere from .04 to .36 ug/mL. Too high a level of 7-DHC is toxic. A normal body gets rid of 7-DHC by using an enzyme to break it down into a usable form of cholesterol . So ideally, as the 7-DHC goes down, the cholesterol goes up and vice versa. In your body, however, the genes responsible for creating the enzyme to break down the 7-DHC are mutated. So those levels are very high for you – currently 116ug/mL. But this is up from last time we did labs. I don’t see how your cholesterol and 7-DHC went up together—there should be an inverse affect.
I really have to become aggressive about getting the specialists to look at you. The main issue is funding—there just isn’t enough of it to go around. But truly, you are a wonder child. I don’t even know how your body can function with a cholesterol number so low. It sheds light on why you are more than two years old and still not doing what a three month old can. Our doctors are fabulous, but none of them are very familiar with SLOS. So I emailed the specialists back in March, thinking they would love to get their hands on you and see how and why you are surviving. Only one responded. His study doesn’t seem like it would be super beneficial to you. However, it won’t hurt you at all either, so if that’s our only option, we will do it. But I am hoping the other two will show interest also. We just have to figure out why your numbers aren’t increasing. And since what we are doing now obviously isn’t working, we need to find a more efficient way of getting cholesterol into your system. Or even better, a way to give you the enzyme needed to break down 7-DHC. And I need to get started on your 3rd birthday fundraiser now, so that we can help contribute to finding these answers.
7-DHC is a basically a precursor to cholesterol. The normal range would be anywhere from .04 to .36 ug/mL. Too high a level of 7-DHC is toxic. A normal body gets rid of 7-DHC by using an enzyme to break it down into a usable form of cholesterol . So ideally, as the 7-DHC goes down, the cholesterol goes up and vice versa. In your body, however, the genes responsible for creating the enzyme to break down the 7-DHC are mutated. So those levels are very high for you – currently 116ug/mL. But this is up from last time we did labs. I don’t see how your cholesterol and 7-DHC went up together—there should be an inverse affect.
I really have to become aggressive about getting the specialists to look at you. The main issue is funding—there just isn’t enough of it to go around. But truly, you are a wonder child. I don’t even know how your body can function with a cholesterol number so low. It sheds light on why you are more than two years old and still not doing what a three month old can. Our doctors are fabulous, but none of them are very familiar with SLOS. So I emailed the specialists back in March, thinking they would love to get their hands on you and see how and why you are surviving. Only one responded. His study doesn’t seem like it would be super beneficial to you. However, it won’t hurt you at all either, so if that’s our only option, we will do it. But I am hoping the other two will show interest also. We just have to figure out why your numbers aren’t increasing. And since what we are doing now obviously isn’t working, we need to find a more efficient way of getting cholesterol into your system. Or even better, a way to give you the enzyme needed to break down 7-DHC. And I need to get started on your 3rd birthday fundraiser now, so that we can help contribute to finding these answers.
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