Brother and Sister Visit!

Today has had its challenges, but they are things like pulling drains and lines and really the worst part of that is pulling the tape off of Maya's skin. She's just tired of hurting, so she has lost some of the discipline it takes to be tough.

But, the kids came with memaw and pepaw today and that produced this:



Parker and Rain brought two bags full of toys and gifts for Maya--several of which they'd hand "wrapped" in gift tissue paper closed by Silly Bands. If you have young children you know what those are and wish you'd invented them as they are latest craze. Parker, Pepaw, Maya, and Rain:



We all visited in the room for a while and Maya was tuckered out, but so happy to see the kids. So, she fell asleep for about an hour while we all ate a very late lunch. Then, Maya was ready to play! Brandy's close friend Ashley with the one and only:

The surgical floor has a couple of drawbacks, but it does have a playroom. Maya made me a pizza and a sampler plate of peas, chicken nuggets, and a croissant. And no, that little chair didn't explode. For future reference I now know that it is a one cheek chair.

Then the three of them cooked up all this food for a party. I am still curious about what several of the food items are, but it is the best hospital food served yet!

Maya got tired and we went back to the room. The kids said their goodbyes until we bring Maya home.

We needed to get her last IV out of her leg and change the dressing on her main chest tube, so this was a little unpleasant, but the nurse, Christy was very patient and Maya did pretty well.

After this, Brandy's mom, Lana, stopped by with a really cool book of fairy tales that they spent a little while reading. She also took some PJs that Maya had gotten sick on to wash and bring back, so that's really nice. Then, my dad and Marty stopped in on their way back from Cotulla. They've been there all week doing an enrollment that I was supposed to work as well. They've been very worried so I know they were happy to see her doing well. And Maya always gets a kick out of Mimi and Papa.

Maya looks good but is still not keeping much food down at all. If we feed her anytime close to the times she gets oral medicines of more than a few CCs, she throws it up...almost as a gag reaction or like her stomach is full. But, she gets better hour by hour, so we are hopeful to get home sooner than later. Later being Sunday. I'd think we'd be fine at home tomorrow and will tell the doctors that in the morning. Of course, there is a very long list of reasons why I'm not a doctor, and 'lack of patience' is probably #4 of several hundred.

A new symptom has appeared and I'm not worried too much about it yet, but Maya is not using her left hand much. She says it feels asleep and tingly. I am about 90% sure it is a result of them having removed the central line that was in her clavicle and it is just sore. Tonight we went back to the playroom and built houses out of blocks and made her use her left hand more than she wanted to in an effort to work out any soreness. We had them check her pulses and the circulation seems good in the arm and hand, so it is probably nothing. She's walking pretty well, but tires easily and is uncoordinated.

Compared to what a lot of other people here are dealing with, this whole thing is nothing. But, as everyone knows, when it is you or yours, it is everything. With all the IVs and drains out, now it is just like having a pretty sick kid. We just keep overcoming the little challenges and hope and pray things just keep going well. We're both tired so overcoming them isn't getting easier. The progress is the payoff and looking over these entries makes it easier to see that we are headed in the right direction.

The hardest part remains not being able to take away your child's pain, not being able to stand in their stead as they go through these things. The light at the end of the tunnel is pretty bright now and I think Maya's beginning to see that, too.

Brandy is Brandy and if you know her that's all I need to say. If you don't, well, I can't explain it here as I don't have the words.

If you know me, you know I should have a T-shirt made with "Luckiest Knucklehead Ever" on it.

We are tired and we may have our "moments," but of anyone in the world, this is the person I know was meant to be here with me at this time for Maya. I hope our lives are like that for our kids for as long as we live. As long as we are together I don't care if it's good times or bad times as long as it's time.