It’s been a lot business as usual with a few interesting points along the way, so let’s play catch up. On Thursday, Dr Kornberg decided to take Nica completely off of her muscle relaxers and see what happens. Considering how little she had been on by that point, I’m not surprised. I think that’s contributing to the constipation issue we’re now having though. Nica was going on her own OK for a few days. In fact pooping in the tub was starting to become commonplace. But then she stopped going for a couple of days. She began having some trouble passing so we had to give her a suppository. Now we know that without her baclafen she needs about half of the Miralax she used to take. Like Tammy said it’s much nicer to have her on a mild non addictive and fairly safe laxative than to keep her on a heavy narcotic.
On the therapy front in her staffing this week it was noted that she didn’t really progress much in OT or ST, but she did show continued growth in PT. Her trunk is getting stronger and she showing a little more control. They said that perhaps they’d send her home on Wednesday but maybe not. We’ll continue to discuss it more this week. Bonnie said that in almost every case, when the child goes home, they tend to make great leaps in their abilities, but Tammy and I are of the opinion that there’s more that she can get from here. Once she leaves here, therapy will become less frequent and less intense. As miserable as we all are being apart, we just don’t want to leave here to soon. It’s proving to be a complicated issue that changes frequently, and we just want to make the right decision.
The social worker has been in talks with All Children’s, Lakeland for outpatient rehab. Dr Kornberg thinks Nica might be a good candidate for the therasuit. He knows that ACH offers it for outpatient in Brandon but he’s not sure about the Lakeland clinic. From our house, Brandon isn’t much farther than North Lakeland so whichever is best for her needs we’ll make it happen. The therasuit is typically only used for a few weeks and she’ll be in outpatient for months. Another down side with her discharge is that with all the changes from healthcare reform the hospital can no longer order Nica’s outpatient treatment while preparing for her discharge. Instead, they have to wait until her discharge is finalized and a closed before they can put through the order. In the real world this means that instead of the 2-3 day lag between discharge and outpatient that was the norm just months ago she’ll see about a 10 day lag. It may not sound like much, but when you see how much she improves in just a day or 2 the idea of 10 days or maybe more without PT just makes me sad. I know there’s a lot we can do at home, but I’m Dad and I can be a bit of a softy when it comes to my girls.
Friday, the Krewe of Zingaro came to visit. They were billed by the hospital as a pirate krewe but they were actually a gypsy troupe that works in the spirit of a Gasparilla pirate krewe. They are co-ed and they were fun to see. They gave Nica her favorite set of beads. They are large black beads with a female pirate rubber duck hanging from them, and it squeaks. What more does a three year old girl need.
Mommy and Anne showed up Friday night with an hour of visiting hours left. It was great to see them again. One of the best parts was that finally there was some else to take Nica down to see Michelle the Mermaid. There were apparently some pre-Gasparilla fireworks that, although we couldn’t see them from the hospital, Anne could see them from her window and the Ronald McDonald House.
Saturday morning, while Nica was in PT, Tammy and Anne secured a spot directly behind the hospital to watch the pirate ship, Jose Gasparilla, come down the channel to invade downtown Tampa. As Nica and I prepared to join them, Grandpa Joe and Grandma Kathy arrived for a surprise visit. We all sat by the water to view the spectacle and collect some more of the beads that were being shot off of the various boats that would become part of the Gasparilla flotilla in the channel . Tammy got hit in the head by one necklace but fortunately we were already at a hospital. It was really loud with all the cannons and pistols that were being shot from the ship. Nica did appreciate the noise at all and kept shouting “bye bye cannons, bye bye.” We watched the ship dock and went to the cafeteria for lunch. Having filled everyone’s stomachs it was time to bid Grandma and Grandpa goodbye and take a nap.
The rest of the evening was low key. We got some play time in with Mommy and sissy before it was time for dinner and bed time preparation. It’s really weird not having to think about Nica’s meds all the time. it was an easy habit to form because it was so important. 3 times a day for 2 1/2 years is going to be a hard habit to get over but I’m excited to do it.
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I love visiting and playing with both girls! I hope Nica’s diaper rash and constipation go away soon! Poor girl. Glad I can hang out sometimes!
I miss my little princess! Hugs and kisses from mommy! Keep up the good work in therapy. You’re awesome! I’ll be there soon! :*
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