Well.......we are here and will be till next Wednesday or Thursday now.
On the one hand, as jealous as the kids are of all you guys in Dallas getting to play in the snow, my thought is, your at the same time freezing your tushies off, so I am NOT jealous...not one little bit. We are cold here, and were supposed to get snow, but managed to just get ice...fun fun fun. But we are still warmer here than there, and for that I am thankful!!! We are missing the Old Man and the critters...a lot....but are being well cared for and loved here in Houston and are making the best of it.
While we knew earlier in the week that we were not going to make it out of town towards home today as planned, we thought we'd get out of here by tomorrow. However, the girls sleep studies (that were supposed to happen last night) had to be postponed and the best we could do is Tuesday night. We have accomplished all but those, so this will give us a couple of days of down time, which we really all need.
Thanks for the prayers for this week!!! We have felt them and appreciate them more than we can say. Since we are holed up here at the RMH today, I thought an update was in order since we asked for specific prayers and have some of the information we anticipated hearing this week.
Our pulmonologist was NOT too upset with me about the oxygen not being started yet, but it was reiterated that it's something we need to make happen. This was further enforced by the scale.....Chance was down 6 pounds since we saw them in November, even with the supplementation. While the pulmo is not feeling like the lower-than-we'd-like-to-see oxygen saturations are the WHOLE answer to Chance's weight loss, treating it with the oxygen at night needs to happen to see if it makes any difference.
Madison & Abigail will have their sleep studies and while we know we will be adding oxygen to Madison's bipap, we will see how things look for both girls and see where we need to go from here.
Our rheumatology visit went really well!! While one of Madison's knee's still has some fluid on it, he was pleased with her response to the steroid injections. After some talk about where we go from here, we got the exciting news that we might be able to try and wean Madison off her Methotrexate as early as this summer!! As long as she continues to do well, no more joints become involved, and the ones already affected behave themselves, we are good to try. If we can get her off the methotrexate and keep things stable with the injections and an occasional oral steroid pulse, it would be huge!!! All in all, it was a very good visit.
Halter monitor is done and now we wait and see if there is anything exciting to hear.
As I have already shared, unfortunately, Chance has lost more weight. I don't even know what to say about that. We are more than a little bummed. And concerned.
We saw our GI nurse yesterday and while I'd hoped maybe, somehow, the weight loss we had seen the day before at the pulmo's would have been a fluke, and more importantly, wrong, it wasn't. He really is down 4 pounds since his last weight check. Blech!!! Plan is to finish looking at other organ systems at this point, which means we have his heart left to look at. At this moment, he's scheduled for an ECHO on the 17th, but after talking to our pediatrician's office today, we are trying to go ahead and get him seen while we are here this week. We shall see.
In the midst of all this, we have had the chance to spend time with people we adore, and that so makes your heart smile even when things are less than ideal. Several of our friends have been at RMH with us, which always makes the "down time" funner when we are hanging around the house. We were able to spend the evening with the Andrew's, eating, laughing, and watching the girls have a BALL with their bestest girlfriend, Thing 9. We were able to spend an evening with the Parker's and were again reminded how freaky it is to have our twin family down here. Chance was able to spend the day visiting with Rachel, and the girls and I were able to meet up and spend the evening with the whole Adam's family, which always does the soul good. And we had a lovely brunch with Aunt Gayle, Uncle John, Margie, Ashton and precious Livi Lou!!! We discovered an amazing new dip we picked up at Bucee's on our way down, discovered an awesome place to buy pre-made gourmet food that is to DIE for, and ventured out long enough today to get SmashBurger's since we were all craving them!!! So we have been eating well too....LOL.
Unfortunately, the Mito Fun Walk was cancelled for tomorrow, meaning our easy access to see all our mito friends at once isn't happening, so hopefully we will get the chance to see a few others while we are here. Plans are slowly but surely being made to keep us busy until we finally get to head back home.
The kids are tired, but the down evening and day today have done them some good. Abby had a rough tummy & head evening tonight, but I am hoping she is feeling tons better when she wakes in the morning. Some more downtime tomorrow will be good for them.
Late at night, like it is right now, is when I miss home the most. During the day your distracted, but when it gets quiet, all are in bed asleep, and there aren't the distractions, the being away from home blues tend to hit. As always, Michael is holding down the fort well, and while CoCo acts as though she is miserable, I know she is happy to have had him home so much this week. I am blessed.....more than I can say....to not have to worry about things there. It's just hard to be away so much, and when the days turn into more than a week, well......
Hope all our friends and family in the snowy tundra of North Texas are staying warm and well. We miss you....just not the cold that is freezing your tushies off<grin>.