Posted (Tina) in All Posts on June-24-2009

Wow, Ella is almost 2 years old. Crazy!

Today, she laid in her pack-n-play during occupational therapy. She was having such a good time that she showed off by rolling on her tummy. Too bad that isn’t what the OT cares about – she wants her to eat! In any case, it was another good session. We are going to try and see if we can get Ella to drink again. It’s been a while since we even tried, so for now, we just stuck an empty bottle in her crib so she can start to look at it again.

When physical therapy came later in the day, Ella started off right away by sitting up. She was having a great time with her physical therapist. It was the best I’ve seen her do in 3 weeks. It was a session just like she used to enjoy before. So, I do think there is a correlation. In other words, we have to take it easy during OT by not making her work too much, so she has energy for PT. Otherwise, it is just too much work for the Bun.

Tomorrow, we only have a physical therapy session later in the day. We’ll see if she does well again. Also, our part-time sitter will be coming over tomorrow evening. I’m going to shadow her and see how things go. We’re excited to get that in place.

Ella’s pulmonologist called today and we got on the same page. We are not going to have any invasive procedures for now. Instead, we are going to increase her diuretic. She currently takes 2.5 ml, twice a day. We’re going to give her 4 ml, twice a day. We’re going to do that for the next couple of days and see what happens. We hope that it helps her body out even more than the initial increase in diuretic about 10 days ago.

Also, we talked about Ella’s weight and how she has not gained weight since the last week of April. Our plan is to let the new dose of diuretic take effect for 2 days and then work toward a 10% increase in food. We’re hoping this combination will make her feel better, get her to gain weight and avoid any pass out moments.

Praising the Lord for this wonderful little girl. She is so sweet and special.

Habakkuk 3:3
…His brilliant splendor fills the heavens,
and the earth is filled with his praise.

Julie on June 24th, 2009 at 9:57 pm #

Look at her bearing weight on her legs! Go Ella! And yay for good therapy sessions!

Joel Snyder on June 25th, 2009 at 1:31 am #

Ella, What great news that you are doing so well. I am praying that the adjustment with your meds will prove to be the answer for your meltdowns. You look terrific and I am hoping things stay in steady progress for you. Tina and Josh I hope things keep working with the babysitter. Have a great week. Love,Grandpa!!!!!!!!!!

Kathy in West Texas on June 25th, 2009 at 4:16 am #

Come on Ella! Walk! You can do it! And I hope everything works well w/ the new babysitter!

Marla on June 25th, 2009 at 4:51 am #

She may not have gained weight lately, but I bet she is taller. When my son was her age he stayed the same weight forever, but he kept growing up. I am so happy to see her bearing weight, she looks quite proud of herself. Love you Ella Bella, Auntie Marla

Fran on June 25th, 2009 at 7:29 am #

Ella, you are getting so tall! Glad to hear that the pulmonologist called today and you got on the same page. Also anxious too hear that everything will fall into place with your part-time sitter and you will have an occasional date night.

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