To say it’s been awhile is an understatement. You have great intentions of keeping up, but then there is surprise surgery, endless days in the car, and all sorts of stuff that happens. Where do we even begin?
Let’s start back at the CP clinic. It went fairly well from our perspective. It was obvious that this was a new program and they didn’t quite have everything figured out yet. The orthopedic surgeon wasn’t in town so we didn’t get to meet with him, but all the other checks went very well. The neurologist was very please with her progress and we began the final phase of medicine tapers. We’ve come off one of the seizure medicines completely, which leaves us down to only one! We went up on a spacisity medicine, which helps her body relax but unfortunately also has side effects of seizures. We’ve seen a couple of odd quirks since then, but I don’t think it’s been seizures. At the end of the clinic we went to x-ray for some baseline shots to put in her file. All was well and we went home.
All was well for about two days. We got a call from the neurologist who had been speaking with ortho about the x-rays. The word we got was one hip is completely out of socket and one is almost out of socket. We needed to meet with the orthopedic surgeon ASAP. That’s exactly what you don’t want to hear from a random phonecall. All in all it appears to be hip dysplasia, and pretty common in kids who don’t crawl and put pressure on the legs. The bones never develop the bend and socket in that area, so as the muscles grow tighter (her’s are really tight) they slide past the hip sockets. The fix is to carve out sockets where they should be and put in some screws to get everything aligned. Then you get to wear a spica cast for several months. Those are the lower body casts with your knees spread apart and a bar between them. Do you understand how that’s going to work with a large baby? Whew. After several weeks we were finally able to talk to the surgeon in person. I saw the x-rays and see what they are talking about. Kids who have this surgery done normally come out fine and never have issues again. For Harp, that probably won’t be quite so easy. He said it would be best if we waiting a year before doing the surgery, but we may do a smaller one now to lengthen her inner leg ligaments, which basically consists of cutting those ligaments to allow them more room to move. She just can’t seem to catch a break in any form or fashion.
In the middle of all this we have started feeding therapy at the Marcus Institute in Atlanta. 5 days a week for 8 weeks, and we are on week 6. It’s been a loooooong few weeks...that drive….ugh. On great days there have been times when you get down there in 2 hours. I’ve not been on one of those days, but it’s happened a couple of times. On the bad days, like last night, it’s 4 hours to get back home. We have to be there by 9:30 in the mornings and leave right at 4 in the afternoon, so we eat the traffic. I’ve made many variations of drives around Atlanta, good old Marietta, Kennesaw, etc trying to get my way to and from the place. We are rotating days between Jami and I, my parents, and last night one of my cousins. Poor Patricia makes the ride every single day. I will say she’s made incredible progress down there. She’s taking in puree foods in small amounts, but it’s more than the empty spoon she refused when we first started. She even took a tiny bit of water from a cup one day! It’s a long process with several feeding sessions through the day, but it seems to be working. While I hate missing all of her other therapies over this 8 weeks, it has been an example of her capacity to learn and develop beyond where she is now. That’s always the goal, never stop developing.
Overall she’s had some really good days lately. Been in great moods, playful and trying to use her hands and arms to hit stuff. She’s gotten a nice farmer’s tan from walking out with Patricia during the days in the stroller. We had someone give us a special tomato stroller and rolling chair that their son had outgrown and they are great to have! It’s nice to meet new friends and they be so helpful with things like that. They invited us up to see their new house and how they designed rooms and showers for their son which gave us some really good ideas for when we build. Whenever that may be, if ever…
So, I’m sorry it’s taken this long but all I can blame it on is sheer exhaustion of mind and body. All of this along with the everyday life of the other three kids just leaves you begging for bed at the end of the days. We are just thankful we get to wake up each morning and have enough in the tank to get through the days. It’s like the ‘90 CART 200 race. Some days we feel like Unser Jr when we come out of defeat with a last second win. Some days we feel like Andretti who ran out of gas in the lead with one lap to go.
In a random stroke of luck, between writing all that and being able to post it we had another adventure. I got a call around lunch that our van had been acting funny on the way to therapy and once it was there it really went haywire. It has an electronic gear selector, and it would not go into the correct gears. Even if you got it into the gear you wanted, it went nowhere with the pedal press. Eventually giving more warning lights and messages it looked like a transmission problem, so we had to call a tow truck. That left me headed out of Dalton to go get them all and bring them back home, which was a short 6 hour round trip. The dealership that has the van now (which is in Atlanta, nowhere close to our home) said they probably won’t get to it until next week. I’m assuming it will need electrical parts which will take some time to order and arrive. I’m hoping everything is covered by warranty because these surprise costs that want to keep popping up continue to add up. At least it’s a car and not a broken person in the hospital again. I can handle things in repair better than people in repair.
-Today is our anniversary! 11 years. Certainly hasn’t gone how we expected way back then. The last few years have changed us a lot. Hopefully it’s been for the better.
-Pray for the rest of feeding therapy. She’s made a lot of progress and we hope to continue at home. We don’t expect she will ever get rid of the feeding tube, but being able to take in little bits of mashed food would be nice. She needs to be able to experience the tastes of things. Also, if she gets better at being able to swallow normally then that’s a big step towards getting rid of the trach.
-Be thankful for good days! She’s had a lot of good days lately and been in the best mood. She smiles a lot, plays a lot, and is allllllllllllmost laughing now. I’ll get a video of her wheeling around in her chair that she thinks is hilarious. It’s really fun when she’s in these good moods.
-We are looking into if Medicaid will pay for a therapy chair like we use down at the Marcus everyday. It’s a Special Tomato high low chair, which positions and supports her body so she can focus on what she’s trying to do (eating currently). It would be great for continued eating therapy at home as well as working on her hand eye coordination (which is really showing improvement lately!) because she’s not slouching down in a seat or trying to hold her body together. It’s on wheels and easily adjusts up and down and forward and back to a wide range of positions to keep her body from getting sore in a position. It goes up to 100lbs so that would last Harp many many years if not all of her life. It would also be great to just be able to wheel her up to the table to sit with us as a family while we eat. Right now we just have a normal highchair and it doesn’t do a very good job of letting her get up close to the table to see all of us. It’s sad to see her left out, especially when the boys always want her to sit by them. It’s a long shot that they would cover something like this, but stranger things have happened so we will try.