Two Weeks Out
Written by: Kirk on Wednesday, April 30th, 2008 at 10:10 PM
We are two weeks out from Ella’s return from surgery. Tomorrow we once again head to Chicago. We will have Dr Bauer check Ella’s port near her temple. Unfortunately one of the tubes to one of the ports crosses her temple and her glasses have caused a scab there. Please keep in your prayers that her glasses won’t damage the tube as Ella really needs to wear her glasses and the tube is pretty necessary as well. I understand the port could be moved externally, put that seems challenging for a two year old.
We will also add more saline, likely over 30 ml, in each port, so Ella will likely look considerably different tomorrow than she does today.
Yesterday I took Ella into get her blood draw to test her TSH and T4 levels (thyroid tests). Her TSH levels had been high for the first year or so of her life, then fell back to the “normal” range allowing us to move to testing only every six months. We went in to the outpatient clinic here in town and Ella seemed recognize where she was as we were checking in with the administrative assistant. However, all doubt was removed when she saw the phlebotomist and immediately began to cry loudly.
Her crying continued, despite her dad promising her ice cream, through the blood draw (although she didn’t seem to notice the actual draw) and only increased when the phlebotomist put the bandaid on her. However she was fine and blowing kisses to everyone by the time we were out of the back room and into the waiting room. Of course we went over to Roger’s grocery store and I let Ella pick out ice cream (twice), then she signed “cracker” so we went and picked those out, again twice. Of course the same aisle had cookies as well, so yes, her dad still with a bruised heart from the blood draw, let little Ella pick out two different cookies as well.
Unfortunately the test results, while finding the free T4 level to be in the normal range, the TSH level is elevated. While it is not as elevated as it has been before, I except her blood draws will continue and likely increase in frequency (as well as ice cream purchases). We should hear from her specialist in a few days to understand what the course of action will be.
It’s funny how we can put issues in the back of our minds when other more “pressing” issues are present. With all of the nevus issues I wasn’t even thinking of thyroid issues. Of course, all this is manageable and we’re blessed that we’re able to monitor such issues.
I hear Ella fussing a bit downstairs so I’m finishing up and going to give her a hug or two.
Tags: Ella, Expander, Nevus, Prayer Request, Thyroid
April 30th, 2008 at 10:46 PM
Boy, dad. You are an easy touch! Poor Ella will weigh 100 pounds soon. But she will still be a cutie! Good for you. A little fun is good for all. I love the pictures and blogs. And a few sweets never hurt anyone. Johnny
April 30th, 2008 at 10:50 PM
Have a cookie for us, Ella!
April 30th, 2008 at 11:34 PM
I love it….she has you wrapped firmly around her little finger, doesn’t she??
She is a real cutie.
I remember when Danny was about 2ish, and he was just learning to sign..we were in the check out at Wal Mart, and he signed ‘candy’ for the first time…I was in tears, i was so proud of him…and my immediate thought was, ’sure, kid,,,how many pounds do you want?”
Ella is a real brave little girl…good for you for giving her something good to remember from the experience.
May 1st, 2008 at 7:25 AM
Olivia says she wants to go to the grocery store with Ella too. Heck, the whole Groetken family wants to go grocery shopping with Kirk. Should we begin the list now? Love you guys! Ella great job on breaking daddy down at the grocery store, now you just need to take him to the mall, puppy store, etc.
Troy, Sheryl & Olivia
May 1st, 2008 at 7:26 AM
I agree with you, if a band-aid doesn’t fix it, ice cream and cookies will.
May 1st, 2008 at 8:18 AM
With all this going on, it is great to see Ella wanting to sign and get her needs known, I know she can learn the signs: tv, new shoes, toys, and putting 2 signs tog like: more candy, more ice cream, she is doing great, and you both are helping her learn so much, you continue to be in my thoughts.
May 1st, 2008 at 8:27 AM
What a strong little girl you have. And what a smart daddy she has. You must give a man credit for knowing that the way to fix what’s ailing his girl is ice cream and cookies.
May 1st, 2008 at 9:45 AM
Since Ella hasn’t passed the 20 lbs mark we certainly wouldn’t mind her gaining a pound or two!
May 1st, 2008 at 9:46 AM
Shh.. Remember Troy, Olivia is a quick learner too and Ella can teach her all SORTS of things!
May 1st, 2008 at 9:47 AM
She certainly knows “more cheerios” “more banana”, “more crackers” etc.
May 1st, 2008 at 9:49 AM
I learned the ice cream/cookie “fix” (after much time) on making her mommy feel better!
May 2nd, 2008 at 3:58 PM
Hi guysThinking of you and love the cute photos. Sending LOVE from Colorado.
July 8th, 2008 at 8:20 PM
I’m glad to hear that Ella is doing well. It is a shame that there is more surgery in the future. I have a stupid question. Since she is such a little thing and just learning to walk, is it difficult for her to keep her balance with all that additional weight on her head when the expander is full? She is such a cutie, I’m sorry that she is having to go through all of this. Please give her a hug for me!Love,Deb