Posted (Tina) in All Posts on February-11-2009

Just another normal day for Ella, with OT and PT sessions.

We heard back from her pulmonologist. As far as her upper GI study, he doesn’t think that there is anything we can do to reduce her retching. Surgically dilating her nissen might make the contents empty from her esophagus into her belly faster, but it also might compromise the strength of the nissen. Since it is an invasive procedure and her nissen has already herniated once, it does not look like there are any immediate remedies.

The increased retching since this past surgery does seem to be tied to the nissen being tighter and therefore fluid is emptying slower. When she drinks a lot and it takes longer to empty into her belly, it starts to build up higher and higher in her esophagus. Then, the reflexes in her esophagus kick-in and she retches. Right now, she has such a hard time coordinating the suck, swallow, breath activity that when we try to pull the bottle from her mouth to limit the volume, it throws her rhythm off and she ends up retching. So, we let her dictate the volume and simply try to help by always making sure she is upright. Plus as she ages, she can learn to control her retching by not swallowing as much liquid all at once and just taking a few sips at a time.

Unfortunately, her nephrocalcinosis (calcium build-up on her kidneys from use of diuretics) has not improved. It hasn’t worsened, but it also has not gotten better. We had expected that it would improve over the past 4 months since she has been on a daily regimen of a non-loop diuretic. We will likely have to wait until our next appointment to get the doctor’s thoughts on what we should do long term.

And if we can get a miracle on Feb 25th with the SVC procedure and the stint, maybe Ella would not need to use diuretics as often. This would definitely help the nephrocalcinosis build-up on her kidneys. We’re holding out for a miracle.

Thanks for all the support and prayers.

Job 5:8-9 (NLT)
If I were you, I would go to God
and present my case to him.
He does great things too marvelous to understand.
He performs countless miracles.

Marge (Indiana friend) on February 12th, 2009 at 7:34 am #

The very first picture…..what a inspiring, happy, loving smile on the face of God’s beautiful miracle, sweet baby Ella. We all love you. Keeping you all in prayer each and every day for continued strengtgm healing and wisdom on this journey.

Anne (CA) on February 12th, 2009 at 8:22 am #

love the peek-a-boo faces, too!!! She looks GREAT!

Angela Rowe on February 12th, 2009 at 11:39 am #

What a cute picture!!!! The one eyed baby!!!I think she has a teen age look in her eye!!! just want you guys to know a few weeks ago when Josh sent the “in the storm” entry we listened to it and it got us through a VERY hard time we are in right now. THANKS for you words…It saved us
xoxox Brian and Angela Rowe

Jennifer Harris on February 13th, 2009 at 3:59 pm #

What a beautiful miracle baby angel and we sincerely appreciate your updates. Our prayers for her and the miracle will happen and We thank our Lord for this blessing, now!

Joel Snyder on February 14th, 2009 at 10:41 am #

Ella, It sure is nice to see you smiling and showing us those beautiful teeth. I am hoping that over time your retching will improve. I am saying my prayers for the 25th and another miracle for you. I will catch you later. Love,Grandpa!!!!!

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