Posted (Tina) in All Posts on February-6-2009

Ella had a good day.

When the nurse came, she weighed in at 9.2 kilos. That is a bit more than is normal for weekly weight gain. We did see her go from 9.36 kilos to 9.15 kilos after all the Bumex kicked in earlier this week. So, it worked. And clinically, she seems to be in a good place: she was smiley today and and even tolerated her feeding exercises without too much complaining.

Also, she had a good time with PT and tolerated lots of physical exercise today. She is getting so much stronger.

We’re so pleased with her progress on the PT and OT front. Although some days are tough, you can clearly see the progress she is making.

Now, we would love to see some progress on the medical front. We received a call this morning and her SVC procedure is scheduled for Wed, Feb 25th. Check-in time is 9:30am and the procedure will start at 11:30am. They have scheduled 4 hours! Wow, that is a long stretch. We’re praying for a miracle…that Dr. Fagan and team will be able to somehow open her very occluded SVC and place a stint. Although there are no guarantees, we just feel that will be a good move for Ella in the long term picture. And as a bonus, it might make a significant difference in the fluid battle we fight on a day-to-day basis.

We have not heard back regarding the upper GI. We’re hoping to have a conversation to see if there are any steps we can take to alleviate the retching. Also, we want to see if we can discontinue her Prevacid prescription. She received this back when she was admitted to the hospital and was having a tough time with her belly sensitivity from her re-do nissen surgery. At this point, if everything looks good on the upper GI, it doesn’t seem like it makes a lot of sense to keep this medicine in her regiment. The pulmonologist agreed and wanted to wait for these results to make a final decision.

We’re anxious to hear about her renal ultrasound too. The hope is that the nephrocalcinosis has decreased over the past few months. All chronic use of diuretics, but more specifically, Bumex is what really caused the decline in the status of her kidneys. Now that we have used a much more mild diuretic for every day and only Bumex every two weeks, we’re hoping to see improvement.

Can you hear me now? Ella has her hearing test on March 25th. It seems like a long time away for a status, but it was literally the soonest appointment that was available. We hope this hearing test will be conclusive. We really want some better information regarding the status of her hearing.

Josh has not been feeling well the past few days (he felt like he was fighting something). It turns out that there are a handful of people that were sick at his office (open cubes). He tried his best to avoid the cooties, but it seems like he may have caught a minor bug. On his way home tonight, he stopped by Grandpa’s to use his thermometer and give hugs to Manny and Maggie. It turns out that he has a low grade fever. So, he has left us gals here at home tonight to hold down the fort. He plans to hang out at Grandpa’s until he is feeling better. He does not want to compromise Ella’s health, as even a simple cold could put Ella in the hospital.

Lots of cute pictures today…enjoy!

Proverbs 8:34 (NIV)
Blessed is the man who listens to me,
watching daily at my doors,
waiting at my doorway.

Kelli on February 7th, 2009 at 7:57 am #

What an adorable outfit, where do I get myself one? 🙂

Joel Snyder on February 7th, 2009 at 8:13 am #

Ella, I am so excited to hear that you have a date for the SVC and will be praying that Dr.Fagan will give us another miracle. I am sitting in the living room with Maggie and Manny and your Dad are both still in bed. I am trying to let your Dad get his rest so he can start to feel better. I am glad to hear that you had a good day yesterday. I can tell by the pictures that you are getting stronger everyday. Your Dad just got up so I am going to get ready for breakfast. I will catch you later. Love,Grandpa!!!!!!!!!!!

Fran Jarrett on February 7th, 2009 at 11:09 am #

Kelli beat me to it! You are one “styling chick” Ms. Ella!

Julie on February 7th, 2009 at 10:15 pm #

So exciting to see such good progress, and even to know that she’s strong enough to undergo the surgery. Will pray for another miracle!

Ani on February 10th, 2009 at 12:41 pm #

My thoughts will be with you guys on 2/25! Miss you!

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