I don’t have the video referenced in this update attached, yet…
It’s been a month of accomplishments for Julie.
The first accomplishment was walking. Julie took her first steps on July 3rd. I have included a short video of the moment. She had been pulling herself up for a couple of weeks, and then side-stepping along the furniture for a week. Our PT was initially concerned that her left foot and leg were too weak and may need some special therapy. But Julie fooled us all again. Her strength increased greatly over a short time and she is walking fine. The PT suggested she was ready to move between pieces of furniture and encouraged us to move things further apart to make it harder for Julie to just simply reach out to the next handhold. This took only a couple of days and as you can see, she started walking soon afterwards.
Since then Julie continues to improve in speed, distance and balance. She can nearly walk across the apartment without resting and she is getting fast. The PT suggested we try to get Julie to hold something while walking. Silly man! If we could only get her to NOT carry something while she walks. She carries toys, water bottles, clothes, sticks… here kitty, kitty… and hardly ever walks without something in her hands.
She crawls up the stairs very quickly now. She is still a little unstable crawling down and is still having some problems getting up and down the furniture. We’re going to ask the PT to work on these before he reduces or stops his visits. We’re all in agreement that he has accomplished his goals of bringing her from a lump on the floor to crawling and walking in just four months.
Julie started babbling sometime around the beginning of the month, too. She was briefly babbling back in November, but we understand that it is typical for a child to start, stop and start again. She is making lots of different sounds. Occasionally, there is a “Momma” or “Daddy” or “Cat” in there, but these are still surrounded by arbitrary sounds and noises ranging from a whisper to a scream in a moment. It’s sort of like listening to non-stop political commercials. Like the politicians, Julie is either right on time or a little early with her proclamations.
Julie finally graduated from the oncologist in June. We thought she was done earlier in the year, but her lab results weren’t quite what we had hoped, so we needed to come in again. This time, the results were within the normal range, so we’re finished with that doctor.
Julie’s appointment with the cardiologist was very quick and successful. There is no sign of the tumor and her heart is healthy. We will continue to see this doctor annually until Julie is school age just to make sure everything continues to go well.
The remaining problem is feeding therapy. Julie hasn’t made any progress since the spring. She will tolerate some food being put in her mouth and will even taste something willingly from time to time, but she refuses to eat any measurable volume. Her weight was steady for about three months, so the pediatrician put her on another formula and increased her calories by about 20%. Julie still has problems with gagging and acid reflux (particularly the first feeding in the morning). The change to the new formula was very, very slow. We also had problems with the people who provide the formula for us, so we were on our own trying to figure things out.
Sarah started taking over for me with Julie’s medications so that we could double up the Prevacid to twice a day. She has been working a little at a time on her book and she continues to sign at the church for a deaf lady on Sunday mornings. There was a short dustup with one of Julie’s therapists, but Sarah stood up for herself and the situation quickly resolved itself. I’m very proud of her.
I’ve had a really hard month. I had a computer failure at work in May that exposed a problem with my automatic failover procedures. In short, they didn’t failover. The beatings began immediately and continued through the month of June. I expect to be in doghouse with the boss for the balance of the summer, so my attitude has been joyous for weeks! To make matters even better, the car was in the hospital for a week getting its cooling system replaced. Basically everything was busted. When I was finally able to pick up the car, I asked if they had a “used car for sale.” It was that expensive! Yet, it was still less than a year’s car payments. Oh well.
Julie’s new mobility caused us a little scare a couple of weeks ago. She toppled over one of the cabinets that I thought she couldn’t shift. She is getting so tall now that she could reach the third drawer and I hadn’t been prepared for that. She survived the incident with a tiny bruise and laughed it off a couple minutes later. The cabinet took the worst of it. I still have to figure out how to fix two drawers. We had planned to start child proofing the house that weekend, but needless to say, we started a little earlier but too late after all. So, I’ve been tying everything to the wall and locking the drawers, doors and shelves.
It’s a lot of work, so I’ve threatened to simply hang Julie from the ceiling and make things easier. The cat voted yes since Julie is getting fast enough to be a threat. Julie was opposed for the obvious reason (although she enjoyed it for the first couple of minutes). However, Sarah vetoed the idea. I’m thinking she might just change her mind given enough time!
Andy, Sarah and Julie Horn
Julie’s progress in oral feeding stopped sometime between the last update and this one. The upset tummy caused by the new formula really hit her hard. In some ways, we almost started over again.
In order to give Julie her Prevacid, I had to dissolve it in a little water (15-20 ml) and then suck up the water and the tiny amount of medicine into a syringe. The medicine weighs much more than the water and doesn’t dissolve completely. Getting all the medicine into the syringe resembles an Olympic sport rather than an exact science. I sometimes need three or four attempts before I get it all.
The incident at my work gave my boss an excuse for beginning disciplinary actions against me. I had been begging him for months to help me join another group in the company since I got shanghaied into his group and just didn’t fit into his master plan of world domination. Up to this point, I believed my work problems were manageable although I had many tasks to complete, a tight deadline, and a little behind schedule. Still, the work remained pleasant and I had time to focus in between weekly one-on-one meetings with my boss. These meetings, however, turned into beating sessions which I dread week after week.