Julie made good progress this month walking and speaking, but feeding progress remains limited to reliving past successes…
Julie is making great progress in all areas…
For the first time in quite a while, we didn’t have any doctor’s appointments this past month. None forJulie, Sarah or me!
Last month, I reported that Julie took her first steps. She is now walking everywhere and getting into everything (see pictures). At the start of the month, her PT set a goal of walking 150 feet at a time. Last Sunday, Julie blew that goal out of the water by walking at least 250 feet around the church building. She is so good at the stairs that she has been using a bear-crawl (no knees). We are currently working on getting her to walk up and down the stairs, walking on uneven terrain and stepping over obstacles. She also stood up on her tip-toes yesterday. Her PT is reducing his visits to every other week, but has left us with double the homework assignments!
He has wanted us to take Julie to a park for quite some time. So, since the weather this past week was strangely comfortable for summer in Texas, we went to the city park across the street from where we live. Julie thoroughly enjoyed walking on the grass and sidewalks. She was fascinated with the bark filler in the playground area. She was very excited to play in the sand volleyball court. Sarah was a little worried since there was a game in progress, but I guarded Julie along with a couple other kids who decided to play in the corner of the court.
Julie was less amused by the baby slide. I’m not very fluent in baby-talk yet, but I think she was saying “You people think this is FUN!?! Are you CRAZY?” I couldn’t quite make it out since she stutters a little. She was absolutely terrified on the swing, screaming something about “child-abuse” to the by-standers! I think there was also a reference to “dirty diapers” and other baby-obscenities, but as I said, I’m not eloquent in her language. The baby swing stands about waist-high off the ground. She has also been fighting us about walking down the stairs and even stepping down out the front door. I suspect she inherited my fear of heights.
We’ve been taking her to the nursery at the church for several weeks. She now recognizes the building and starts to squawk in protest when we walk inside. It’s a sad time when I pass her through the door to the workers. She screams almost as much as giving blood. Funny thing is that she just sleeps in the swing all the time she’s there.
Somewhere along the way, Julie picked up another cold. This one was fairly strong and was complicated by a bout of teething. The symptoms lasted for weeks on and off. There were fevers, nausea, lethargy, irritability, and some nasty diapers. The worst was when she had a temperature of 102.9. It came down within 20 minutes with some Advil. We are so used to her coughing, gagging, nausea, and some nasty diapers that we had been dismissing it for weeks. Finally, we began to split her first feeding of the day into two sessions separated by an hour. We were, effectively, back to six feedings a day. That seemed to help for a while, but then Julie began having trouble with even these small meals. Finally, it got so bad that she really couldn’t keep any meals down, and she had some really nasty diapers. So, we did a day of Pedia-Lite. Well – let me tell you, folks – that really did the trick! She was ravenous for the next few days. Sarah has been increasing her feedings and Julie is feeling great! And, yes, the diapers are much easier to deal with.
That whole incident has opened up a new opportunity for oral feeding. Julie hadn’t made any progress in recent weeks, even falling back to where she was last spring. But in the past few days, Julie has been much more willing to let Sarah put food on her lips and even put the spoon in her mouth. Julie has begun accepting liquids again. She still has a gagging response when the food or utensil gets to the middle of her tongue. Despite these issues, Sarah has noticed that Julie is conscientiously working through the reflex; trying to fight the urge. Feeling good is the first step to feeding therapy.
We’ve been trying to give Julie anything we thought she would like. Sarah gets an “all-natural soda” that Julie has enjoyed. (It’s all natural…we find it growing in the woods next to the park… it’s hard to know exactly when the cans have ripened). Over the months, we have also tried milk, water, strawberry yogurt, pureed fruit, French fries, cooked vegetables, bread, crackers, cheese, Cheerios, scrambled eggs, pancake batter, chips, and all sorts of jellies, sauces, butter, etc. Julie has shown great interest in the flavor of soft foods, but rarely will she accept more than a taste of anything.
Speaking of flavors, just when you think you know what’s going on, Julie throws you a curve ball. Sarah had great success yesterday with the unflavored Pediasure peptides. We started giving it to Julie last June through her mickey button, but we were warned by the doctor not to give it to her orally, because it tastes terrible. Apparently, Julie doesn’t seem to mind at all. Who knew?
Julie’s feeding therapist is also cutting back on visits. She had been coming up to 3 times a week, but will start coming just once a week.
Julie still hasn’t started talking yet, but there is a noticeable change. Instead of simply making long indistinct sounds (like singing or humming), Julie is starting to make sounds that include more consonants and distinct syllables. She is interacting with the TV more. She really enjoyed an Afflack commercial with their silly bird. We played it several times for her and she laughed her heart out each time. She especially loves shows with music. Some of her favorites are Bubble Guppies, The Wiggles (from Australia) and Super Why. She bounces up and down to the music, laughs, and claps. She has even started waving good-bye to the Wiggles when all the characters say “Good-bye” at the end of the program.
Sarah has been spending more time on writing her book and playing the piano in one of the upstairs rooms. When she plays her keyboard, she lets Julie sit on her lap and play the keys with her and press all the different instrument buttons. Julie loves it! Sarah has also taken on two new sign-language students since both her previous students graduated this past spring. Of course, she is still signing at church on Sunday mornings to a deaf lady.
The summer has flown by for me. I’ve been swamped at work and at home so I haven’t been able to relax or get caught up on any projects. It’s been quite frustrating. School starts for me Monday evening. I have classes Monday, Tuesday and Thursday nights, plus three weekends. I don’t have any classes with continual assignments every day/week. Just three to four papers each class and lots of reading. Most of the classes end by the beginning of November, so I’m looking forward to an easier semester than last year.
Andy, Sarah and Julie Horn
I took a pause from work to complete this update. I had a major deadline at the end of August, but still had some items unfinished. The pressure from my boss continues although I told him at the end of July that I would need more time. I have scheduled some downtime at the end of the week to test changes to my failover procedures.