Posted (Tina) in All Posts on October-20-2008

Ella had another good day.

It was a little rough because we had to return to the hospital. More labs and another weight. She melts down and despises the whole experience. And you really can’t blame her. She likes getting in the car and having the change of scenery. But once she realizes where we are and what we are doing, the meltdowns begin.

As of tonight, we are not sure what her labs look like. Hopefully, we will find out tomorrow. Regarding her weight, she lost more again. One week ago on discharge, she weighed 7.9 kilos (17.4 pounds). Today, she weighed 7.7 kilos (16.9 pounds). She has been tolerating the 24 kcal at a rate of 25ccs per hour (600ccs total volume of formula), but this is a significant amount less than what she was receiving the past few weeks.

Although I have not seen the labs, I decided to try and increase her rate to 27ccs per hour starting at 7pm tonight. This will give her 48ccs more formula in a 24 hour period. We’ll see if she tolerates the change overnight.

We had our first physical therapy appointment in our home today. The last one was in the beginning of August. Before that, it was several weeks prior since our physical therapist switched. Bottom line: the last time we were on a consistent schedule was Gainesville which was May 2008.

This physical therapist is willing to come to our home 4x per week. We’re excited about that because Ella has so much catching up to do. The session today was one of the best I have seen. Ella did great – – she was tolerating a lot and having a good time with stretching, kicking, grabbing. Kelly was able to watch and catch on to some techniques that she can use each day when handling Ella, things that will help Ella get stronger.

It was a great baseline session to measure her future progress and it provides an assessment of her overall clinical picture. When she is feeling good, she even tolerates and has fun with PT.

We did not receive the Farrell bags today, as promised. But we’re hoping that we get them tomorrow and that the increase in food volume will not cause too many problems. Our goal will be to get in touch with her pulmonary doctors tomorrow to review the labs and our current food & medicine strategy.

We’ve enjoyed the past few days with Ella feeling well. I know that there is no promise in her continuing to feel good as we adjust her feeds and medicine. But it is my hope and I cling to the truth that God is in control and choosing to use Ella’s little life in whatever way brings Him the most glory.

Thank you to all of you out there that check on our girl and pray for her – – you know who you are. It means so much to know that Ella’s smile can be shared and enjoyed by many who are looking to make the most of each day.

Psalm 40:8
I desire to do your will, O my God;
your law is within my heart.

The Laz Fam on October 20th, 2008 at 10:52 pm #

We don’t say it often, but we think it often: we love you!

Kelly the "Super" Nanny on October 21st, 2008 at 1:41 am #

PT today was phenomenal. The therapist is a true gem and I think she will be very good for helping us help Ella progress smoothly and steadily. It was very affirming how receptive Ella seemed to be. But we definitely know that Ella will have her rough days, and not all will be as great as today, but you’re right–it was a great baseline for figuring out what she can do already, and feeling out the general “attitude” she has toward “working out.” Good thing she has lots of great toys to play with 🙂

I’m curious to see what the BUN was from her labs, because she seems like she’s in SUCH a GREAT place these last few days. It’s been wonderful to have our little Bun back to play with. What a nice break in the clouds… it definitely makes those dark cruddy days worth it (even though in the midst of them it doesn’t always feel like it.)

In Acts 20:22, Paul says “And now, compelled by the Spirit, I am going to Jerusalem, not knowing what will happen to me there.”

“I am going… not knowing what will happen.” Such is life with Jesus Christ leading the way–we never knew we’d end up where we are, surrounded by the people who surround us, being loved by the people who love us, but we are because we follow. That life is the Christian walk, but it seems like with Ella there’s a whole new meaning to that idea–going but not knowing–we don’t know what each day will bring with this totally medically fragile child, but at the same time she’s our little warrior–our champion.

Constant struggle, constant rewards.
“There are no accidents, only God ordained moments.” What a great phrase. 🙂

Joel Snyder on October 21st, 2008 at 2:20 am #

Ella, I am so proud of you and so happy that you are feeling better. Keep up the slow and steady progress and soon you will start to catch up and I am praying that the food and fluid problems will go away. You look terrific and what fun with Mom,Dad,Kelly and new therapists to help you. I will try to come and see you soon. Love,Grandpa!!!!!!!!!!!!!!!

Terri Trainer on October 21st, 2008 at 6:05 am #

Woo-hoo!! A Therapist at last! I’m so happy you found someone who will come out so often. It will be exciting to see her progress over the next few months.
Hope the unpacking is coming along. Send interior photos when you can. Love and miss you guys a ton!

Chambers Family on October 21st, 2008 at 6:38 am #

First thing I do every morning whether traveling or at home is check on the West family. It is great to see you home and making progress. I think that you will always be adjusting meds with Ella as she grows. I know there is a future with fewer medications. Much love and prayers to you all…

Megan on October 21st, 2008 at 7:20 am #

Doodlebug I was so happy to see you yesterday and also mommy and Kelly. I hope you have a great day and I hope that tomorrow you can see some snow….=)

Jennifer Harris on October 21st, 2008 at 8:09 am #

It is a real joy to see your beautiful baby smiling and feeling good. Peace and contiued blessings to all of you.

Kim and Brian Brennan on October 21st, 2008 at 8:22 am #

What a great smile. You guys are all so amazing. We all get strength from the two of you and from Ella. We keep you all in our thoughts and prayers.

Estela Williams on October 21st, 2008 at 8:49 am #

What a blessing… a wonderful therapist, the perfect Nanny and Godly parents, what more can a baby girl want :-). Glad to hear, love you guys! The Williams

Joan and Steve Odell on October 21st, 2008 at 11:06 am #

What great news about her therapy. She looks so happy = so glad things are settling down and she’s feeling better. Prayers continue and hugs – Steve and Joan

Williamsburg on October 21st, 2008 at 1:23 pm #

What a relief to be on the upswing after those first few rough days home from the hospital. I’m so sorry that Ella has developed such an (understandable) aversion to the hospital, but you know what? I’m also really grateful that she has such a keen awareness of her surroundings. Makes life difficult sometimes, but with everything her little body has been through, it’s such a blessing to know how smart she is. Thank You, God, for the incredible ways that you have used and continue to use the West’s story – keep blessing them as you do so. We love you. XOXOXO

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