Posted (Tina) in All Posts on April-16-2008

The photos above were taken early in the day before Ella had to work. She went to the physical therapist today.

Overall, the appointment went well. Actually, she cried a lot. The PT handled her more today. Ella had to work harder and she also doesn’t know the PT that well. I had to increase her oxygen to 1 liter and give her breaks to catch her breath.

When we left, we forgot this special chair that the PT has let us borrow for Ella to sit in each day. I usually have it at the apartment and bring it back and forth for her sessions. Well, the office is all the way across town so I just figured that we would have to deal with not having the chair until next week. This evening, the PT called and mentioned that she would drive it to us on her way home. That was so nice of her…she mentioned that she did not want any backward progress for Ella.

Aside from time in her chair each day, our homework includes making Ella sit up for 5 minutes with support, once every 2 hours throughout the day. When we put Ella in this position, she has a total meltdown. That is not going to be fun. But it is the only way to make sure that she starts to build up more endurance and strength in her neck, back and trunk area.

Late this afternoon when Ella woke up from a nap, I tried it for 5 minutes. As expected, she had a meltdown. Once we were done, she fell asleep…she had totally worn herself out. Hardly any time had elapsed between her long nap and this one, so it just demonstrates her small amount of energy. It will be exciting to see her get stronger over the coming months.

Today, we were successful in finding a physical therapist in Denver that can do the sessions in our home. That is exactly what we want. Apparently, the therapist specializes in infants and preemies. That is an answer to prayer. Right now, we are still hunting for a primary care doctor and an occupational therapist. I’m hoping these come together in the next week or so.

We’re also trying to switch durable medial equipment providers next week. There have been challenges that have surfaced this past week, but we’re hoping that it all pans out so we can switch next week, as planned.

Ella did not do much with the bottle today, but really enjoyed her pears again. I’m hoping that she will dig on her bottle more tomorrow. She hasn’t finished a bottle or taken a substantial amount in a few days. I think going between the pears and bottle is conflicting for her. When she does well with one (even when they are not in the same session), she tends to not try as hard with the other.

One thing is for sure: although Ella was fussy most of the day, she is still as cute as ever. And although crying is tough to hear, it still has a special place in our hearts since Ella spent months never being able to cry.