Archive for May, 2014

Scoliosis Surgery

Saturday, May 31st, 2014

Maria had surgery for her scoliosis on Wednesday the 28th. Cathy’s a bit worried because Maria’s been pale and bloated and, of course, in pain. However they gave her a unit of blood which helped her color, cut down on her fluids which should help her bloating, and are giving her plenty of morphine for the pain and valium for the muscle spasms.

She has been an absolute rock star. The doctor said she had the least blood loss during the surgery he’s ever seen. Yesterday Maria started trying to pull herself onto her tummy, her preferred position. We stopped her because they told use she shouldn’t be on her stomach. However they said it’s OK now so she managed to roll over on her own today. The nurse (doctor? well, someone anyhow) said kids are typically not even eating this early after the surgery and for Maria to be pulling herself onto her stomach this soon is amazing. They put her in her wheelchair yesterday and today. She is MUCH taller now that her spine is straight! The doctor handled her at one point and he was pretty…not rough with her but not tentative either. The point is we are all a little freaked out — they operated on her SPINE for crying out loud — but he keeps saying she’s fine and we don’t have to worry about hurting her when we handle her. We still need to be a little careful when transferring her but he said most kids are back to normal within three weeks (so before her birthday).

Maria’s supposed to go home Sunday (according to the doctor) or Monday (according to the nurse). Cathy did get a lift for getting her off the floor at home. We haven’t done much with it yet but it will make it easier to get her into bed or into her wheelchair. This isn’t just about the surgery. Maria’s getting really big. For now Cathy is going to put Maria’s mattress in the living room so they don’t have to worry about it.

Brett, of brettapproved.com, met with Cathy and Maria before Maria had her surgery. He did a blog post, “An afternoon with Maria“.

Play Date!

Tuesday, May 27th, 2014

2014-05-24 16.40.24 Every year in school, Maria has a little best girl friend, and usually a boyfriend,too. The boys have typically been the cutest one in the class, the girls are typically the smart, friendly, popular ones — not just the outcasts or other special ones (at least from my observations). I’m forgetting her bestie from preschool and pre-K, but since then there’s been Jenna, Tia, Trinity, and now Sydney. Sydney transferred to Maria’s class in the middle of the year. She was in our group on a field trip a few months back, where the kids were supposed to look at a map, follow the clues, answer the questions. The boys in the group didn’t want to do anything, one or two of the girls answered one or two questions, but Sydney, she wanted to complete the work, answer all the questions, in a nice, quiet way.

Anyway, in Maria’s yearbook, Sydney wrote that Maria was her best friend in 4th grade and she put her phone number (I gave Maria’s phone number out to all the kids in her class, in case they want to keep in touch over the summer. Already Jeffrey has called twice to say hi.). I know how close the girls are, so I called Syndey and talked to her mom to see if she’d let Sydney come over to play with Maria. So they came over and hung out at our house for a bit, then we all went to a movie (Legends of Oz: Dorothy’s Return). Sydney wanted to sit next to Maria, and Dawn and I sat together and there was a big space between us. Even though I was only about 10-15 feet away, it was hard (but good) for me not to be sitting right next to her. Maria was so good! She sat still, was quiet (until she started drinking her milk, very loudly and for a long time); it was just toward the end when she got fidgety, so I traded places with Sydney, took Maria out of her wheelchair, while she mis-behaved for the rest of the movie (just moved around a lot, which gets more difficult to handle the bigger she gets).

When we left, they asked when Sydney could see Maria again, so I said she should probably wait at least a couple weeks after her surgery. So sweet! Oh, and we found out the girls have the same birthday! Dawn said Maria has been really good for Sydney and she hopes they’re in the same class next year (she even told the teacher that). In these days preceeding the surgery, it was a very welcome distraction.

Our other distractions this weekend were: Saturday we went to SeaLife down at the Arizona Mills Mall. Maria’s favorite part was when she got to pet a starfish. The puffer fish were fascinated by her. Couple of the rays were too, but in 2 different tanks, the puffer fish immediately came to Maria and just stared at her. Cute! She seemed to enjoy it. 2014-05-24 16.43.57

Sunday we met Brett (of BrettApproved.com, a website that evaluates hotels, restaurants, and venues for accessibility.) I’ve been “guest evaluating” for him, so it was good to finally meet face-to-face. Maria seemed to like him.

After that we went to Peter Pan, a play at the Peoria Center for the Performing Arts. We sat next to a very sweet lady who Maria immediately began a relationship with. She was pretty good, but got a bit fidgety towards the end (Maria, not the lady). Nice small theater.
Just a couple more days now. Gulp. Blood tests tomorrow.

End of 4th Grade

Wednesday, May 21st, 2014

School ends tomorrow, but Maria’s last day was yesterday. She had a swallow study today and I wanted here to have at least a little bit of fun before her surgery next week. They had an award ceremony, where Maria got a certificate for being on the Honor Roll again. That was all four quarters this year! Everyone clapped and hooted for her. So sweet.

Then each 4th grade class did their performance. They were hilarious! Maria’s class did theirs to Wake Me Up by Avicci. It was cute, but I could hardly see her until the end because she was in the back.

After school, I looked at her yearbook and the kids wrote the sweetest things! Her 4th grade best-y, Sydney, wrote that Maria was her best friend. Lots of the kids want to stay in touch over the summer and wished her luck with her surgery. It’s always sad at the end of the year, not knowing what is coming next year. So far every year has been great (though kindergarten was the least good). And as long as Maria still has Elisa, we’ll be good!

Swallow Study

Wednesday, May 21st, 2014

And so, the first swallow study Maria has had in about 5 years, and they said about the same thing that we have heard in some of the previous studies. She doesn’t manage her liquids well due to muscle control and weakness and coordination of all the little parts in your throat. The liquid hangs out in places it shouldn’t, thins out when it is mixed with saliva, and sometimes quietly goes down the wrong way, aka silent aspiration. Fan-frickin-tastic! Her recommendation, which she will be forwarding to Pulmo and pediatrician, is nothing by mouth. At least she was super sweet about it and did a good job during the study. Some of our experiences haven’t been so good.

Of course, I immediately went to the cafeteria and fed her and she was coughing a bit, but hey…

Oh yea, and I asked her if it should get better, worse, stay the same with age. She said, “typically worse.” I asked what we could do about it and she said most of the strengthening exercises were cognitive (following directions to do this or that). And even more depressing is that it typically gets worse after surgery because they’re putting all their energy into healing. Yea

1st Place in Science Fair!

Saturday, May 3rd, 2014

Thursday evening there was a science fair at Maria’s elementary school. Her project was about vertebrates (cat) and invertebrates (worms–gummy worms, of course). She did such an awesome job with it! And for her efforts, she got a 1st place ribbon. And it’s not the kind of thing where everybody got 1st place. When we were looking at her presentation board, Maria grabbed the ribbon to show me! She did such a good job! It was super crowded because they had the kids’ projects along each side of the hallway, then fill that up with people… So we did our usual–got there early, got our pictures, then got out.2014-05-01 17.08.32 (800x600)

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Friday was a less fun day. Maria got her supprelin implant (slow down puberty) in her arm. Went well, but it’ll take a day or two to get the anesthesia out of her system.