Posted (Tina) in All Posts on August-18-2008

Ella had a pretty good day.

We met her new PT from the Early Intervention Program. When I opened the door to greet her, there was a man with her. I found out that they are a husband/wife team. I certainly did not expect two PTs, but that was a nice surprise. Things seemed to go smoothly, so I’m hoping that we have found a permanent, long-term match. If things go well on their end, there is a chance that they may start accepting our insurance. They will know in the next month or so. That would be great because it means that Ella would not be forced to use different PT therapists (one from Early Intervention and more frequent visits for a PT that accepts our health insurance). Only time will tell…

Ella is still requiring 2 liters of oxygen. It seems like her congestion is steadily getting worse. Her secretions are getting tougher and tougher to manage and thus, the retching has increased again. She retched 6 times, just during one episode in front of the PT this morning. I am sure anxious for the bronchoscopy. I want to know where these secretions are coming from and if there is something else we can give her to help, especially to eliminate the retching. We are back to 10-25 times per day. Before our last trip to the hospital, there were days where she retched 40 times in one day. We are not quite at that level, but pretty close.

We still did not hear from Dr. Kays. I sent another email tonight, letting him know that I was still waiting for his thoughts. He knew I wanted his thoughts when Ella was in the hospital before his vacation, but he didn’t have time. So, I just wanted to be clear that we still want his professional opinion.

Even though we have not heard from Dr. Kays yet, we are exploring the surgery schedule at the Children’s Hospital. I would really like to hear from him, but at the same time, waiting is getting old. We need to take the next steps for Ella, so we have more information to treat her and her symptoms lessen. I am hoping to hear back from the Children’s Hospital tomorrow. And of course, still hoping that Dr. Kays will answer us back too.

Shush…shhh….shhh. As I quiet my spirit, I hear this truth: His timing is perfect. So, I’m taking a deep breath, trying to be still and letting the truth resonate my spirit: He is God. He is in absolute control of every detail in our lives.

Psalm 46:10
Be still and know that I am God.

Roxie (Adrienne's friend) on August 19th, 2008 at 5:50 am #

Bless your hearts….I know the waiting is so difficult and I’m sure that Dr. Kays plate must be very full or he would be getting back with you…Try to picture Ella in God’s hands especially when she is struggling. My heart hurts for you while you wait. Her pictures are sooo adorable. And her cheeks have got to be sooo kissable!Please give her kisses from all of us in Arabia! Roxie

Louise (Daniel's grandma) on August 19th, 2008 at 7:02 am #

Try calling Dr. Kays office today (Tuesday). I know he will be there since he is changing out Daniel’s g-tube today around 10:30 a.m. Eastern time! There is a measure of confidence in getting Dr. Kays’ professional opinion about Ella’s current condition and need for surgery, as he was the surgeon who got our babies through those first rough months. No matter how qualified and competent the new docs are, it will make you feel more at ease to have Dr. Kays consulting with them. So call him again today, he is there! Ella, as always is in my prayers. God Bless.

Joel Snyder on August 19th, 2008 at 8:25 am #

Ella, You look great even though I know that you don’t feel the best. I am glad to hear that you got new PT’s. I hope your Mom and Dad hear from Dr. Kays soon and you can progress with your care. Have a good day and I will catch you later. Love,Grandpa!!!!!!!!!!!!!!

LoriAnn & The Gang on August 19th, 2008 at 11:27 am #

I am sure it is frustrating that Dr. Kays hasn’t gotten back to you, yet. You may feel like you’ve been kicked to the curb, so to speak, but I am sure that he is either figuring out what is best for the Bella-Ella, or he just “knows” that all will be fine. It is nice to see that people are looking out for you, like Louise. Perhaps Dr. Kays feels that you are in good hands now. I don’t know it all, of course, I just know that that man did so much for your baby and for so many others, that he wouldn’t have just given up on you.
Regarding the new PTs; how cool is that?!? I would think that having a husband and wife that work together would be such an asset. Most married couples DO NOT like working together, but these two do. Plus, if one is sick, I would think that Ella would still respond well to the one that could come over. When we had our gym for 15 years, Tom and I loved working together. We let each other use each other’s strengths to make the gym a great place to be. (I still remember it NOT being an odd sight to see people praying in the front lobby!) I was the “people person” (duh) and my hubby was the business man (that is why we don’t live in a car LOL). Anyway, I think that it is a good thing that this couple can work together and will appreciate all the more your relationship as a married couple.
Blessings to you and your family,
From the Kuhn Family

Adrienne (Melissa's sister) on August 19th, 2008 at 10:15 pm #

God’s waiting room is not an easy place to be, but as I read your post I wondered if perhaps his reason for not getting back is that he is working with another “Ella” who’s life is in the balance…. I hope that doesn’t sound bad. It *IS* hard not to KNOW WHAT TO DO and I will pray for you to sense where the Lord is leading you SOON!! (Lord, I need answers YESTERDAY!)

We continue to lift you guys up…. the boys always ask about Ella. She has come sooooooo far! What a sweet little face! Roxie’s right – it is smoochable!

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