Saturday, April 26, 2008


My strong boy never ceases to amaze me.

Today Thomas had a botox injection appointment. He received six injections in each leg. I laid him across my lap on his belly to get the injections. It was over within thirty seconds from when it began. He never cried, never whined, squirmed a little, but was otherwise such a big strong boy. When it was over I sat him up on my lap and he looked at the doctor, clapped, and when the doctor clapped back he gave him a big ol' grin.

He really is an amazing little boy.


The time had to eventually come when Thomas would get his first real big bad injury. Of course it also had to be a time when it was due to something as stupid as mom not putting shoes on him and dad letting him sit alone on the four-wheeler.

Usually when I take Thomas outside I don't bother with shoes. He can't walk so what's the point? We went outside and daddy decided to take Thomas around the yard a few times on the four-wheeler. As he always does, he tucked Thomas' feet under his (daddy's) legs so they wouldn't come close to the hot motor. They started their drive and did a lap or two before running out of gas. Daddy got off waiting for mom to make her way over and let Thomas stay sitting on the quad. Then I came and took Thomas while daddy pushed the quad back to the garage. Thomas and I played outside a bit longer, riding in the wagon and sitting on the lawn mower (even though it wasn't on Thomas thought he was so cool sitting on it playing with the steering wheel). After twenty minutes or so I brought him in for his bath and bedtime.

As I was undressing him I noticed he had something on his toe and reached down to yank it off. Before doing so I took a closer look and realized it was his skin! He had two medium sized burns on the top of his foot near his big toe. He hadn't cried out while on the four wheeler, nor acted in pain at any other time we were outside.

I ran a cool bath for him and put him in. I cleaned him up and allowed the burn to soak in the cool water. I got him out and put some aloe gel on the burn, lightly wrapped it in gauze, put a sock over it and he promptly fell asleep. Of course I debated whether I should take him to the ER or not, but since he acted like it didn't hurt and it looked bad but not horrible I decided to leave it be for the night.

The next morning I unwrapped the gauze and put more aloe and fresh gauze on the wound. We went on some errands and then came home. All the while he acted as though he hadn't a care in the world. When I removed the gauze that afternoon it stuck to the wound and I noticed some discoloration on the gauze. I decided to go to my "in-home medical professional" aka GOOGLE. When I read some of the results about burn care and burn severity I decided it would be best for Thomas to be seen by a doctor. I called his pediatricians office and was told to take him to the ER near them which included a burn unit.

We spent over four hours at the ER. Which is crazy since it was only serving children and it was busy but not crazy busy. By the end of the visit Thomas was diagnosed with a second degree burn but what they did and told me to do was the same as what I had been doing. They gave me a medicated ointment to use and sent us home with an appointment set up for the next day at the burn clinic. Of course I was given major guilt trips about Thomas being on the quad without shoes. It really didn't matter, I couldn't have possibly felt worse than I already did, regardless of what they had to say to me.

The next day we went to the burn clinic and again the doctor tried the guilt trip on me for no shoes/quad. Okay, I get it, world's worst mother here, I know. I felt like asking the doc if he had kids, and if so had they never in their lives suffered a preventable injury while under his supervision. But I bit my tongue.

The doc said that while the burn was bad, and would require five or six weeks to fully heal, that it was small enough not to require any type of graft or other major procedure. I was told to put the cream on it and change the bandages twice a day, put him in the tub as usual and wash the wound while trying to slough off the dead skin.

So, basically to do what I had been doing.

I beat myself up over not taking him in the same night it happened. I surrounded myself in guilt over not putting shoes on him, not reminding his dad to watch his feet on the four-wheeler, and for not noticing the burn right away. But I have decided to forgive myself, relieve myself of the guilt, and realize I am human and things like this will happen. I will never again allow him to ride the quad without shoes or jeans, but I won't stop him from riding. He's going to get hurt and I won't always be able to prevent it. Life happens and while I will be more careful, I will also be careful not to smother him so that he cannot explore and enjoy life and what it has to offer.

Monday, April 7, 2008

Sick & Tired

UGH! Thomas is still sick. He was puking all afternoon after school on Wednesday. Thursday he was listless and laid around most of the day, not eating but drinking some. Friday he was back to his old self, or so it seemed until he started puking again. Saturday was another no-puke day. We went outside to enjoy the (finally)nice weather and he had fun riding the four-wheeler with mom. When we came inside he laid on the couch and began throwing up again. Sunday was another great day. We went outside and he rode in his power wheel and sat on the swing for most of the day. We came in and he ate real well, played for a bit then fell asleep at 5:30 (YUCK!). Around 12:45 he woke up and needed to vomit but managed to keep it in. I came to the computer to shut it down and he laid on his back on the floor. Next thing I know, puke city all over again. In his nose, ears, hair, all over. So at 1 o'clock in the morning I was up giving him a bath. After the bath he was fine again, happy and laughing, playing and reading his books. So far today he is acting fine again.

I placed a call in to his pediatricians office and am waiting on a call back. I hope this is just a bug going around. I don't want him to have to go through any testing of any sort. I want him to be well. It is his spring break and it's not fair to him to have to spend it being sick!


You know those commercials for the office supplies where they have their "Easy Button"? Well, I want an easy button. I'd press it right now and Thomas would be well, my house would be clean, my laundry would be caught up and dinner would be cooked.

When did it get so hard? It seems I am forever standing atop a mountain of laundry (especially with the half dozen loads of pukey clothes and towels from the past five days). My house is overtaken by dust and dog hair. My kitchen table is the catch-all for everything - mail, books, food packages, telephone, camera, and crumbs from Thomas' breakfast.

I know, I know, get my butt off the computer and get to cleaning, maybe that would help. But it doesn't. I NEED the computer. I NEED the Internet. I NEED my friends who help talk me down when I'm freaking out. I NEED my blog to get my thoughts out of my head to make room for other things in there. I NEED the Internet to look up signs and symptoms, for freebies, for the best deals, for anything to take my mind off the zillion things I should be doing but will never find the time to do in a single day. The computer and the Internet are my link to sanity. Without them I would be sitting here pulling my hair out making strange noises as I rocked back and forth hugging myself.

Okay, maybe it wouldn't be that bad, but it would be bad.

I guess right now what I really need is to get off my butt and get to the housework. And now that I've unloaded my frustrations and anxieties I think I can do that.

Wednesday, April 2, 2008


Being that I am a first time mom, and the mom of a special needs kid, I have no experience with having a "normal" child getting sick. I wonder if regular moms worry and freak out as much as us special needs moms. Every time Thomas gets sick I wonder if there is more at play than just a virus or a bug. Is it something deeper and more sinister? Is that cough and fever just a precursor to something scarier?

I am always worried that some day he will eventually end up having seizures. Many CP kids end up having seizures but we have been lucky with that so far. But the thought is always there, in the back of my mind, lurking in the darkness with all those other scary thoughts that come with being the mom of a special needs child.

Tonight Thomas is sick. He has been vomiting throughout the day since coming home from school. He hasn't eaten anything but has drank two cups of juice. He fell asleep around 5 only to wake up three times to vomit. He is miserable. He looks so sad, pale, and small. I don't like it. It scares me. He had this same thing happen a few weekends ago, it lasted for just two evenings (he was fine during the day) and then went away. I'm hoping that is the case this time. But now I wonder what is behind this? Why is he throwing up? He has a low-grade fever, nothing serious. No coughing, no runny nose, no other symptoms.

So why am I so worried? Why does this little nugget of fear embed itself in my brain? Do regular moms go through this? Or for them is a cold just a cold, throwing up just a stomach bug, a fever just a fever?