Bottoms Up!

Today is the last day of your antibiotic for your eyebrow infection. Usually this med gives you an upset stomach which results in super severe diaper rash. Your skin breaks down and it bleeds non-stop. When I change your diaper, you cry hard and bite your wrist to cope with the pain. I am known to take your two week dosage and cut it in half once your eye is healed and your bottom unbearable. But not this time! We got through all two weeks with your rear intact. Thank you Jesus!

Little Miss Sunshine

It’s not often that everything lines up perfectly so that we can spend some time enjoying outside. First, you and Bubby need to be well, awake, and in good moods. Generally you are both pretty healthy and happy, but so often you take naps in a tag team fashion. If we hit three out of three as far as you two are concerned, then the weather has to be perfect. Not too hot for you (who can’t sweat to cool off), not too cold for Liam (who chatters his teeth if the AC is around 72), not too windy for you (your contacts get dried out and your eyes puff up something fierce)…and of course rain, mosquitoes, and high ozone levels keep us inside also. If all these conditions coincide, and we don’t have other commitments, we get to go outside and play. Like today!

The four of us went to Bear Creek Park to spend some time on the toddler playground. There were a lot of kids there, but mainly on the larger playground so Liam got to explore pretty much on his own—with a lot of help from Mommy or Daddy. The other one of us sat with you in the shade, listening to all the kids and feeling the small breeze. You seemed to really enjoy it. At one point we put the boy in a baby swing that was in serious need of some WD-40. But we weren’t at all surprised to find you thought the squeaking and creaking was hilarious. The “big kid” swings are at a whole different playground within the park, and we didn’t make it that far tonight. Next time we will start there, because I know you will love to sit in my lap and swing.

Despite the perfect weather conditions, your cheeks did get shaded pink. Your skin is just so sensitive. But really, you don't seem to mind your slight sunburn, and a little bit of color looks good on you!

Seven Times Seven

Brother’s name is getting popular fast. When I was pregnant with him and first started telling people we would call him Liam, everyone looked at me like they didn’t understand, and said something along the lines of “Leo? Lennon? I am sorry….what?”. Now I hear, “Oh, I love that name. That’s my nephew’s/best friend’s son’s/neighbor’s dog’s name!” I guess that’s how it so often goes. You try to get something a little different and then it explodes. Oh well.

But I am telling you all of this because out of curiosity, I looked up his name to see what the ranking was in 2010. For Liam, it is number 49. Our Liam is short for William (named after Daddy), and William is always in the top ten. So surely, there must be other Liam’s that are hiding as William from the Social Security Administration. But the cool thing is, I looked up Audrey, and guess what number you are in 2009? 49! Isn’t that fun?

Birthday Bash Benefit!

Today Mrs. Whitney came over to meet us! She is a super sweet woman who wants to help make your birthday benefit a reality. She works for RE/MAX of Texas to raise money for the Children’s Miracle Network, and offered to help Mama out. I cannot even express how pumped I am that it is mid-September and we are already getting started. If she hadn’t given me a push, I would be looking around in May wondering where all the time went. Mrs. Whitney thinks what I have in mind is very doable and definitely has the potential to be successful. Having no idea how to do a fundraiser, having her to help has given me loads of confidence already.

Our first step is to pick a location and date. I have a location in mind, but need to check availability. As for dates, we are thinking late April, early May. It is going to be a birthday celebration, but June is busy and hot. Plus if we do it during the school year, chances are better more people will be in town. Once these two things are set, we can start working on finding sponsors. Mrs. Whitney says company sponsors are often lining up to give to children and she has some good ideas of where to get donations.

This is totally outside my comfort zone and element, but you are good at pushing me to do things I otherwise might not. And it’s something I have been thinking about almost since you were born. I am so excited to see how it comes together!

On a side note: we are celebrating your brother’s first birthday in about 5 weeks. I should probably get started on that little party too…

Sad Study

We went to the med center for the third time this week today. On the agenda for today was a swallow study. Mrs. Tamara came this morning and got you good and warmed up. She tried a few practice swallows and you did great. We were super optimistic the study would go well.

At the hospital, I continued doing your oral stim while we waited. You were doing so great. Dr. T and the techs came in, we got you set up, and you were given the first squirt of barium. And it was over from there. Immediately you gagged, started coughing and threw up. We tried several times but didn’t get any further. At the end you just flat refused to even shut your mouth, so we knew you wouldn’t swallow anymore.

We got a tiny peek at what happens when you swallow. This time you aspirated a little. Unfortunately, I don’t think this is a good example of what happens most often. When we are at home, in our own environment, eating something you like, taking our time, you do much better. I explained this to Dr. T who completely understood and agreed. She said that if I felt comfortable trying tiny tastes at the house, she trusted my judgment. But from what she saw today, she couldn’t give me the green light to push the oral. As a doctor, she needed to tell me to protect the airway and let the feeds go. We scheduled a clinical visit in a few months, and at that time we will probably set up another swallow study. In the meantime, she said to definitely keep up the non-nutritive.

I wish it had gone better. Not only so that we could practice feeds more confidently, but so that you didn’t have to go through another bad oral experience. You cried at least half an hour after the study, and were very frustrated. I hate that for you.

A couple interesting things came of it though. For one, I saw your adult teeth in your gums. They are huge! Well, probably normal sized more than huge, but I am used to your tiny, half developed, no-cholesterol-helped-them-form teeth. These new teeth are not going to be fun to cut. But I bet they’ll be pretty!

Also, Dr. T said it was a good call not to do the cleft palate surgery. She had seen in the notes that we saw Dr. S on Monday and decided against it, and had assumed Dr. S was the one who wanted to delay the surgery. From what she saw on the x-ray, Dr. T says wouldn’t recommend ever closing it up. She feels like you hold your head back to keep your airway open (like in CPR when you must tilt the head back to open the airway). With your airway being so narrow, Dr. T sees the cleft as a safety valve like I do, only for oxygen intake. Most likely, air goes up your cleft, into your sinuses and down your throat, just as if you were breathing through your nose. She was surprised that you have never had airway problems other than difficult intubation before, and guesses that your cleft is what has helped prevent a trach for you. God definitely knew what he was doing when he left that little slit in the roof of your mouth!

Eye See An Infection

Your eyebrow is infected once again, so we got a last minute appointment to see Dr. U. He really isn’t sure why this keeps happening. It looks like the internal stitch from your ptosis surgery, but it is uncommon for an infection this long after surgery (over a year) with the skin intact. Dr. U thinks maybe it is an allergic reaction to something in the air. The last couple of days you’ve had purple bags under your eyes which also makes him think allergies. But just in case, you are going on amoxicillin which has always cleared it up in the past.

Rubbed You The Wrong Way

Today at school I laid you on your tummy over a Boppy and you started turning your head back and forth, back and forth. I was super impressed! I let you get a good neck exercise in, and didn’t flip you onto your back until you became irritable. Towards the end of the school day I noticed your chin was very red. Mrs. Kim made the connection… you must not have picked your head up all the way and with each turn rubbed your chin a little. A little added up to a lot because now it is raw. Poor little shnookie. No wonder you'd had enough!

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!

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.

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!