TCH, Home, Repeat

Another trip to the hospital today. This time to see Dr. L. We are going to try another swallow study; it has been about a year since your last one and we are ready to start practicing oral feeds again. She also prescribed Miralax and Milk of Magnesium and a suppository weekly to see if that helps prevent your “episodes”. I am convinced they are related to bowel movements. We talked about a handful of other things, but I think that is the main points. You are 15.5 lbs, 27ish inches. Your blood pressure was awesome though! Everything else looks great. Keep up the good work, Babydoll!

Tough Suff

Matt from The Wheelchair Shop came to adjust your stander today. And guess what. He had to make it a tad larger! The minimum size for the stander is 27 inches. When we ordered it back in February, we had to factor in a thick soled shoe in order for you to be long enough. But since then you have grown, and the AFO’s and shoes give you more height than we anticipated. So he expanded the stander a bit and adjusted a couple more angles. Next week he will take about an inch and a half off the headrest to make it lower on your head and then it will be perfect!

We also went to the Med Center today. First we met with a doctor to go over your sleep study results. No surprise there. She said you slept fine. If you start having a few bad nights a week instead of a month, we need to figure out what is happening. Otherwise, she recommended we repeat the study in about a year.

The only abnormality was the amount of time you actually slept—eight hours. That is low for someone your age, but not for kiddos with SLOS. From what I hear, most of your friends sleep a lot less than that. In fact, 8 hours is probably impressive for you as well. I would guess that on average it more like six. From early on we talked about how even though you need only a little sleep, Daddy, Mommy and now Liam need more. So you have been very good about talking quietly in your bed whenever you wake up in the night, and let the rest of the family sleep. I can’t wait until you are able to entertain yourself, so that you won’t be bored crazy in there.

After our appointment, we headed downstairs for a blood draw to test your cholesterol. And you, the bravest girl in the world, did not even flinch when you got stuck. No pouty face, no tear, no nothing. I couldn’t be more proud.

Honey's Bunny

Today Honey came and picked you up from church to spend the day with you! What a special treat! Liam is lots of fun, and we are so happy to have him in our family. But the boy takes up a lot of time and attention. I know you were thrilled to have Honey all to yourself.

"Sick" Day

Well today we started another camp at church. I was planning on taking you and Liam to childcare, but you woke up feeling bad again this morning. Vomiting a lot, bad BMs, temp of 99.4 (feverish for you). I called Grammy to give her the heads up that you were sick, and asked if she would be willing to be on call to come get you if your condition worsened. She said she would and I continued packing everyone up. Five minutes later you felt very warm to me, and I took your temp again—101.4. So we called Grammy again and told her you couldn’t go to childcare. I dropped you off at her house, along with your pulse-ox, oxygen tank, plenty of Pedialyte and asked Grammy to call me if you got any worse. Around lunchtime she touched base…you were fine! Grammy said you had been happy and smiley all day, and hadn’t thrown up anymore. Very strange, but I am so glad you feel better! And I am so grateful we have grandparents who are willing to drop what they are doing in order to help take care of you! How blessed are we?

Rough Morning

This morning you woke up sick with one of your little episodes. I have some ideas of what could be causing this, and plan to talk with Dr. L at our next visit to explore those ideas. But today you and I needed to stay home from church. Towards evening you seemed to be feeling better. I am so glad these spells don’t last long!

Brotherly Love

At dinner you and Liam sat next to each other and held hands. At least until Liam found your skirt and thought it was a toy. I love to watch the two of you interact. He is going to be your best buddy.

Standing Tall

Today we got your AFO’s (ankle braces) so you are able to be in your stander. The doctor doesn’t think you need to be in them all day every day since your feet aren’t spastic or tight. The tech thinks it is a good idea in order to keep your feet from getting tight. I figure we will see how you tolerate them. If you don’t mind, then we might as well wear them. But if your skin breaks down or they make you super uncomfortable, we will only wear them in the stander for now.

The AFO’s are pretty cute and tiny. You LOVE the Velcro straps. You laugh and laugh when it is time to put them on or take them off.

Here you are, standing in your braces for the first time. It is unbelievable how long you look all stretched out. This is going to be so good for you!

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.