Posted (Tina) in All Posts on January-9-2009

…to the Doc. Yep, she went to see Dr. Perry today. I had not seen him in months since before Ella went to the hospital in early August. Josh took her on the last appointment in November. It was good to catch up with him.

It’s also good to have perspective. He was pleased with Ella’s progression. He even took note at how well she was holding her head up and how much stronger she is compared to last summer. I explained how Ella is working out each day, as witnessed above.

Ella weighed in at 8.66 kilos, up from 8.5 kilos last week. This means she is 19 – 19.1 pounds. We are confident that is good weight gain since she is acting well clinically. Dr. Perry was pleased with her recent weight gain since we increased her food and calories since Dec 11th.

We are scheduled to see the pulmonologist on Jan 22nd. He wants the pulmonologist to determine her volume of fluid intake. She is intaking 816 ccs, when she should be taking around 860 ccs. In the meantime, Dr. Perry would like me to try increasing the calories of her food to 28 k/cal. Since she is so fluid sensitive, he suggested that we give her the increase in calories right now and have the pulmonologist determine the schedule for fluid/volume increases.

Also, he asked us to wait about one more week and then to stop giving her Prevacid. We’ll see if she has any adverse affects. We really don’t anticipate any since they only started giving that to Ella right after surgery to help with some tummy discomfort she was having at the time.

Dr. Perry also mentioned that as Ella approches her 2 year birthday, speech skills are going to be important. Since Ella’s skills in this area are minimal, he wrote a script for speech therapy.

All in all, it was a good visit. He wants to see us back in mid-February, about a month from now.

This afternoon when I came to pick up Ella at home to go to the doctor, I peered out the window while Kelly changed Ella’s diaper. It was such a cute sight. You might have to look close, but there are 5 deer just hanging out in a neighbors back yard, peacefully enjoying the afternoon and view of the golf course. Ahh, the life of a deer.

Psalm 42:1
As the deer pants for streams of water,
so my soul pants for you, O God.

Kelly "Supernanny" Fischer on January 9th, 2009 at 10:57 pm #

Very cute verse, Tina. Very appropriate!

I’m so glad Ella is getting stronger–it’s so easy to get lost in it because we’re there every day but when a doctor sees her after several months, it’s nice to know that he sees a very obvious increase in strength. I know it makes me feel better about all of the exercises and therapists and everything is paying off.

I’m excited to see how Ella takes the density increase in food. She’s done so great so far that I’m hoping she’ll just keep pushing forward. I think she will 😉

I hope you guys have a nice relaxed weekend. Of course, there’s snow down here in the Springs–I was greeted with that about halfway into my drive home which made the second half less than appealing. But I’m safe and sound, and I hope you all are too. Love you and miss you all!

Joel Snyder on January 10th, 2009 at 8:16 am #

Ella, I can’t tell you how pleased I am with the report from Dr. Perry and how proud I am of you with your steady progress. Mom,Dad,and Kelly what a great job you are doing with the “BUN”. I know that sometimes when you are in the storm it’s hard to see the light at the end of the tunnel. Believe me when I say you are making great progress. Slow and steady wins the race. You guys are the greatest I will catch you later. Love,Grandpa!!!!

Williamsburg on January 10th, 2009 at 1:11 pm #

It’s a blessing to hear about times when weight gain is a good thing – some of us are in the opposite boat after the holidays =) You are always in our hearts and prayers – so grateful for the assistance of good support from doctors and other team members. Love and hugs. XOXOXO

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