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Stares and Stairs

Since the fetal surgery, I've had a small dose of what it's like to ride in a wheel chair in public. Oh the stares! It makes me chuckle. I wonder how Davey feels about all of his stares. How does he process it? Occasionally, a kid will ask Davey, "What's wrong with you?" His reply is simple, "My legs don't work. I have spina bifida". So proud of him.

Then there are the stairs. Bed rest prohibits trips up and down, so I'm stuck. I long for my body to be able to climb them. I feel left out when the rest of the family is upstairs while I'm stuck on the ground level. I remember when Davey felt the same way. While most kids his age were running around, he was working with physical therapists and his sisters to crawl up just one step, then one more. Now he effortlessly crawls up and then slides down them in an instant. He got used to the stairs.

Here's an update on the family, Abbie and Anthony, who were hoping to do a fetal surgery on their daughter, Ava. The insurance did approve the surgery. But because of some findings in the MRI, they are not candidates for the surgery. I hope Abbie doesn't mind me sharing an excerpt of her email that she sent me, but I've been so impressed with her perspective and strength. It has definitely been a difficult road, as I know you know all too well, but we are staying positive. Hearing that we couldn't have the surgery was crushing, but with the help of our faith, we accepted that it just wasn't the plan for our Ava. I have since been thinking about you and your family and I do not feel alone. We are going to take this perfect gift we've been given and we are going to rock it! :)

I had my final doctor appt. at Children's Memorial Hermann Hospital last Tuesday, May 8. Baby Maggie still looks good. No concerns. The docs really emphasized the strict bed rest I need to observe. I was emotional saying goodbye to this team of miracle workers. I don't know when or if I'll see them again, but they are legends in our family.

On Wednesday Matt flew to Houston. He arrived in the late afternoon. I loved seeing him again! We were only separated for 10 days, but it was too long for my liking. We had our "last supper" with Kelly, Wendy and kids. Being with them for almost a month was a choice experience. I left a better person. Matt and I returned that same Wednesday on a direct flight and arrived in Utah at midnight. Because of bed rest restrictions, I didn't climb the stairs to my bed and slept on the couch. Matt didn't want to leave me alone, so he slept on the other side of the sectional. There's no place like home!

I had another appointment today with my new doctor. I'm their first patient who has had this surgery. It's difficult not being with the "experts". I was in a lot of pain while they did the super long ultrasound. Not fun to have fresh wounds pushed on. Baby Maggie looked okay, but they are concerned that the ventricles in her brain are getting bigger. I'll go back in a week to check again.

I love being with my family again. The visits from family and friends keep me from going crazy and overworking. It gets old to hear, "Millie, sit down!" But I obey, and I'm grateful. Thank you for your service and love.

The pain is still present. The incision doesn't bother me as much as the upper abdominal area. That's where they had to cut muscles and rearrange my insides. I get shooting pains at times. Surely it will get better soon?! Sleeping is difficult because I can't get comfortable. I'd much rather sit than lay down.

Matt is yelling at me, "Millie, you need to lay down."

Here are my caretakers the past month.

My one complaint is they made me laugh way too much. Ouch!

Comments

  1. Millie your strength and fortitude is so inspiring! I wish I could take your pain for at least a day so you could have a break. I'm so proud of how amazing my dear old friend is! I love you and think of you every day!

    Bull

    ReplyDelete
  2. Thanx for the update! I've been thinking about you non-stop but wanted to give you all some privacy. Know I will be coming by next week!

    I'm so glad you're home and recovering, even if it's hard. You always remain so positive. Love you, Girl!

    ReplyDelete
  3. I saw Kate on Thursday at school and I asked her if you were home yet and with her big, new tooth 1st grader smile, she beamed and said "YES!!!" I told her I wanted to come visit you. I am going to do that this next week. I am going to call you and see when it's best to drop by.

    It is so great to hear all is well.

    ReplyDelete
  4. So glad to hear you are back home. You are still in our prayers. So glad you are with your cute, sweet family again!

    ReplyDelete
  5. Hang in there Millie (and Matt). It really is great to get the updates so we can all learn from you and your experience! Thank you for sharing.

    ReplyDelete

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Thursday:  Millie and Maggie went to the Primary Children's in Riverton for an ultrasound on the kidneys and brain for Maggie.  Everything looked good. 
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