Christmas Comes Early

Mrs. Karen, your PT, brought you a new toy today. It is a battery operated bell that sings Christmas music. Sounds like a strange gift, but it is perfect, because you can work it all by yourself. We have an adaptive switch hooked up to it, so that you can push a big red button to turn it on or off whenever you please.

The switch has a little interrupter that we put in the battery compartment of a battery operated device. The device is turned on, but to make it work, you have to push your button, which is very sensitive. As soon as you let go of the button, the device turns off. The idea is to teach you cause and effect. Eventually we can hook up communication devices to it, so that you can push a button to say that you are hungry or want a certain toy or need to use the restroom. The possibilities are endless. I have thought that you understood cause and effect for a long time now, since we have a handful of toys that are easy enough for you to operate. But when I watch you with the switch, it is obvious that you get it.

The tricky part is finding toys that will work with the switch. All of the toys we have are battery operated with an on/off switch, but you also have to do something else to activate them. You have to push Pooh’s bottom to get him to walk and talk, push the monkey’s noise to get him to light up and play music, the elephant’s head to get him to jump around and laugh. If these things were to be hooked up to the switch, you would have to hold the button down and then push the toy also. Kind of defeats the purpose of the switch. We will have to keep our eyes peeled for toys like these. Other ideas Mrs. Karen had were an oscillating desk fan or a radio. I don’t have any of these that are battery operated. So Mrs. Karen went hunting through thrift stores to find an old toy that would work and she came up with the Christmas bell.

Sounds are your favorite, and you really like playing the music. So while I made dinner tonight, you sat in your chair serenaded me with Christmas tunes. Several times you made me laugh when your hand hovered over the button until you sneezed or coughed—then the force would push your hand down and you would surprise yourself by starting it. Sometimes you would turn it on and off so fast that I only heard the first few notes of the first song over and over. Other times you held it on long enough to cycle through all the Christmas songs a couple of times, and there are at least 7 on there. Which is good for my sanity. When Daddy came home, I didn’t even realize it was singing in the background until he asked why I was playing Christmas music. He was impressed to find out it was you making it work!

Record Time

This morning we had an echo scheduled for 9:50. We don’t expect anything to be wrong, but it has been over a year since we have taken a look, so this is really just a follow up. We arrived with Honey and Liam a few minutes early, were taken back quickly, and got set up for the exam. You did such a good job, lying nice and still and quiet. When the tech was done taking pictures of your heart, we cleaned up to be on our way. As we were walking out the door, Honey and I realized it was just a little after 10:00 and we were already done for the day. We couldn’t believe it! We have never been in and out anywhere close to that fast. In fact, we always talk about how we think there is a time warp in TCH, since we usually get there early morning, and no matter what is on the schedule, we don't leave until 5:00 traffic time. Parking was only $4.00! In fact, it almost felt like a waste of a trip to the med center. We kept looking at each other saying, “Well, what can we do around here?” After trying to come up with something for awhile, we eventually decided to call Daddy and see if he and Grandpapa could meet us for lunch. So that’s what we did! It was such a nice surprise for our day.

Heavyweight

Today we went to TCH to follow up on your weight loss from our PICU stay. It worried us that you lost a half pound, especially when it takes so long for you to gain it. I increased your feeds over the last month in hopes of gaining it back. The good news is that you now weigh 15.2 lbs. The bad news is that you are throwing up a lot more now than you were before. We had gotten to where you threw up once a day, maybe even once every other day. It was always early in the morning or the middle of the night when you were clearing the mucus that builds up. But recently you have started throwing up at the end of every feed again. So I asked to speak to the nutritionist, and we talked about a new game plan. I am going to switch your formula so that it is higher in calories, meaning you can take less volume. I will have to supplement with Pedialyte or water so that you get enough fluid, but you can digest those much faster. I am praying this slows the vomiting down a lot. Just in case we decided to have another CT scan of your shunt. 50% of shunts malfunction and have to be replaced within the first two years of placement, so it is always in the back of our minds as a possible explanation. I haven’t heard any results yet, but usually no news is good news.

Busy Body

You have gotten so active lately. Many people have told me that they notice you are extra alert, talking more, laughing tons, reaching for things. I have seen these things too too, but I am focused on your progress in these areas. It is so cool when other people realize it.

Just thinking of you...

...and YOU, my love, are gorgeous.

Window Wonders

Tonight while I was at the gym, Daddy discovered that you think opening and shutting the blinds is hilarious. In fact, he said you laughed till you were breathless. I am sad I missed it, but I bet you can guess what we will be doing tomorrow!

Forgiveness

As you can imagine, 9 weeks in the NICU, over a dozen surgeries, weekly visits to TCH (sometimes bi-weekly or even tri-weekly), meds, home health supplies, special formula and more has been extremely expensive. We were blessed to receive Medicaid in February of 2009 through the MDCP (Rider 28) program. Since then, everything "you" related has been covered 100%. The 8 months preceding that have put a huge dent in our pocketbook. Our insurance was privately financed by the owner of Daddy's company, and covered close to a million dollars of your medical bills. Still, there was much we had to self pay. We worked diligently to pay our portion of any expenses, and additionally put over $10,000 towards different creditors throughout 2009. Our hope was to be free of medical debt by 2010. Unfortunately, you were too much for our insurance company to handle, and that coupled with the death of the company’s owner forced the insurance company into bankruptcy in August of 2009. We were able to be covered under BCBS, however, many of the previously unpaid claims fell to us. Next week a committee at Texas Children's is meeting to decide what portion of a $37,000 debt we will be held accountable for. To help our case, I wrote a letter explaining the circumstances and asking for debt forgiveness. The first two paragraphs sum up your current medical situation quite well, so I thought I would post them here.

"Audrey arrived in June of 2008 and surprised us with her medical condition. After a perfect pregnancy, we induced her at 41 weeks and at first sight we knew something was wrong. She was diagnosed at 6 weeks with Smith-Lemli-Opitz Syndrome (SLOS). An autosomal recessive disorder, she basically cannot convert 7-DHC into a usable form of cholesterol. I am in contact with many other families affected by SLOS, and of the several dozen other children I know, Audrey is by far the most severe. Cataracts, ptosis, and glaucoma have left her blind in one eye, and we are uncertain of the vision in the other. We put contacts in daily and treat her as if she can see fine. Cleft palate, lack of suck-swallow reflex, extreme oral aversion, Hirschprung’s, small stomach, slow motility, and anal stenosis have resulted in a colostomy (reversed) , G-tube, chronic vomiting, reflux, and chronic constipation. At 22 months, Audrey is smaller than her 5 month old brother, weighing in at 14.5 lbs and 26 inches long. She is also less advanced than he is, barely able to support her head on her own, rarely reaching, never sitting, unable to bear weight. She was able to roll by 6 months, but over time regressed. We discovered in September of 2009 that she has a severe case of hydrocephalus, which explained a lot. We are working on getting back the skills she lost, but despite this set back, she has made progress in other areas—previous issues with PDA and ASD are gone, as is her high blood pressure. Her most developed area is communication; she can sign “mama” and “dada” and even say “mama”, although I am usually the only one to recognize it. Still, things continue to pop up such as sleep apnea and scoliosis, and we anticipate other obstacles such as major dental work, orthopedics, and behavioral issues. Many of these children receive a secondary diagnosis of autism, but so far we do not see any indicators of this.

Despite all her health problems, she is the sweetest, most loving, beautiful child. She is quick to give smiles and giggles, and would be content to cuddle all day. Since she can’t see well, if at all, sounds are what make her laugh. Right now some of her favorites are plastic bags, snapping, zippers, and her brother Liam. He makes all sorts of gross and hilarious noises. And when she smiles, it is so joyful and genuine. Anyone who meets her can’t help but love her. We wouldn’t trade her for the world."

You should know that I am not in the least bit worried about this issue. We strive to live debt free, but medical debt is something we can't control, and if we end up having to pay it, I am ok with that. You are worth it and so much more. It will take us some time, but God has been so good to always provide what we need and then some. I am confident that this will not be hanging over our heads for too long, no matter what the committee decides.

Miss Sensitive

Yesterday for the first time you watched a video in your chair—it was Dora the Explorer, “Dora had a Little Lamb”. You were at the perfect height to see the TV while keeping your head straight, and you seemed to do a good job focusing. At one point in the show, Boots started crying. Which made you cry. You have been so sensitive lately! This morning Liam was jabbering away about something, and you got all pouty and the tears puddled up in your eyes. You cry like something has devastated you, and I usually come rushing to see what is wrong. I hold your face in my hands, give you kisses, and ask what is wrong. It doesn’t take long before your cries turn to coos and your tears turn to smiles. I have no idea what is going on. You are such a strong baby. Even when I know you are in pain, usually just holding you can comfort you enough to make you happy. So one of two things is happening. Either something really hurt your feelings, but being my tough girl you get over it quickly, or you are totally manipulating me to get attention. Either way, I am impressed!