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.

Jim and Char Jordan on April 16th, 2008 at 8:32 pm #

Boy I can understand not wanting to hear her cry, but the benefit is stretching her lungs. She didn’t have her crying time when she was little so now she is making up on lost time. Hope things go well LOL Jim and Char

laura blackwell on April 16th, 2008 at 10:11 pm #

Beautiful baby girl, it breaks my heart to see the tears. I, too, will watch excitedly to see her sitting up and hitting those milestones.

Joel Snyder on April 17th, 2008 at 12:06 am #

Ella, Nice job at PT today you did exactly what you were supposed to do. Welcome to the “NO PAIN NO GAIN CLUB” you will get better at this and soon all those tears will go away. It snowed tonight in Denver but as usual it will be gone by tomorrow afternoon. It sounds like things are starting to shape up for you coming home. Have a nice day today and I will check on you later. Love,Grandpa!!!!!!!!!!!!!

Matt, Abby, Austin & Caed on April 17th, 2008 at 4:31 am #

Hard work is sometimes just that…hard work. It’s great that she’s able to do the PT at all though. God has brought that sweet little girl awfully far…and taken untold hundreds (maybe thousands) of us along with her through this website and other ways too (like meetings in the NICU 2). It’s really cool the way God works and who He chooses to work through. We are really blessed when we submit totally to the Lord and are willing to be used in whatever capacity God has for us. By giving up everything we are and everything we think we own to Him we gain everything that really matters.
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9

Steve and Joan Odell on April 17th, 2008 at 5:55 am #

You can sure see the little ‘buds’ in her gums – that will be the next joy!! Everything is coming together according to God’s plans. She just grows sweeter and dearer each day! Hugs – Steve and Joan

Lizotte Family on April 17th, 2008 at 4:11 pm #

Just one of those days… I’m certain she’s got to be working on those teeth… But she looks so beautiful in her peach outfit.
Big Hugs

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