At this point you know me well enough to know my excuses for not updating. Same song and dance, different days. Today I'm home for part of the day with a sick kid. It's actually Hayden, who's group of friends have already been out sick this week so I guess we were due. She rarely gets sick and hasn't even been to the doctor in years now. A little different than her sister who lives at the doctor and hospital. We have actually been pretty good lately to be honest. We had one stay in the hospital for a j-tube that came out. She was throwing up food, which is a bad sign when no food ever goes in the stomach. So I hooked up a vent to her G port and pushed water in her J port and it immediately started pouring out. Great. Mom and the nurse take her to Erlanger to get it fixed, and the person working the fluoroscope committed the ultimate sin by saying "this should only take 20 minutes to fix." Some hours later they finally get it placed. Back home they come. We celebrate this easy win for a little bit only to realize it came back out again. At this point they don't trust it to be done by flouro again with means she has to be put to sleep to get it placed. No big deal, except there is nobody there to do it that late on a Friday. Guess what that means! Dad and Harp get a stay in the hospital until they can do it the next day. She had been off food all that day and would have been off all night and can't go that long without any fluids, so they had to put an I.V. in until the procedure so ther we went to the ER. Pretty calm night stay. No sleep of course, but the procedure went really quick and she did great. So that's been our only hospital stay lately, and I'll take it over what could have been worse.
We did see neurology this week for our 6 month check-up and he was really happy with what he saw. Her tone was much lower overall, no seizures, med balance seemed to be good, and he gave us an alternative to the tendon surgery. We will meet with ortho next month and may do injections in her inner thighs to loosen them up and skip the first surgery. We will need to look at a lot of variables to really decide, but options are always good. She's been really happy lately and anticipating things we do really well. She really looks like things are turning up in her head in so many ways.
We did get a prone stander, which puts her in an upright and supported position like she's standing up. Hated it at first, of course, but now spends about 30 minutes at a time in it doing well. It will help tremendously with her head control development. It also allows her to have object in front of her where she can reach them and interact easier. She's done well in therapies and is really working to grow. Problem is, her body is still growing, too. She's getting big, weighing 30 pounds now! That makes it harder on her already underdeveloped muscles. We just keep working and doing the best we can.
We did have a hard change hit us recently. Lilly, our caseworker nurse from hospice, left to take care of her family. She was an all-star and Harper never went without anything because she stayed on top of it. She made sure supplies and medicines were always in supply, harassed doctors to get answers and help in odd hours of the days, even searched the entire country to find someone who would do a single rent out on a feeding machine to push Harper's foods. She was relentless in her care. They have been short handed there now with a few people leaving, but thankfully our weekend nurse Jennifer has been picking up a lot of slack doing her normal shifts on weekends and also helping during the week. If we're in the hospital we normally see her coming in to check on Harper. It's certainly been an adjustment already trying to handle things that were normally done for us.
I think that's about it for the major updates. I'll try to do a little better, but I'm not going to promise it. Life seems to be picking up speed at home and work so there's no telling. Then again, no updates normally mean things are going fairly decent!
-We listed the house with a realtor. Harper's getting big, and difficult to handle. Bath time is really difficult now. As much as we love this house and the neighbors, we've got to get started on the building process. We've been making tweaks to plans and have some good stuff figured out for her and saving every penny we can because special needs adaptable isn't cheap when it comes to building. It will be worth it, though, to do it right. She deserves a full and mobile life if most of her time is spent at home. But, that can't happen until we sell.
-Pray the kids and us stay healthy. Whatever we get Harper is exposed to. Cold and flu season is coming and that's the scariest time to try and protect Harp. Sanitize all the things!