Written Saturday, April 27, 2019:
Short update and some perspective and healthy reminders.
Lilyan continues to run fever each day, but mostly feels good in between those fevers. They stay between 101º and 102º and continue to come down with Motrin and Tylenol, so we aren’t overly concerned — just watchful. As I said in my last update, we feel like these constant fevers are an indication of how hard her body is fighting to beat this infection. She is very tired all the time, but mornings are typically better for her. Each day at about 2:00 pm, we see her really start to fade, and by bedtime, she can barely even hold her head up.
It’s hard to watch her go through this and twice over the past five weeks, both during some of our scariest moments with her, Scott and I questioned our decision to put her through this surgery. We knew that not doing it would’ve meant a short life for her, but we started to wonder if it might’ve been better to have given her a shorter life without all of this pain and all of these surgeries and hospital stays and really hard separations from her siblings. Without all of these powerful medications that carry, along with the hope of healing, the risks of life-changing side-effects and complications. Without all of this disruption to her normal life and regular routine, and the uncertainty that each day brings.
But as we talked through these things, Scott realized, and pointed out to me, that it wouldn’t just have been a shorter life for her. It would’ve been a shorter life that included exactly what she’s going through now — wound infections, in and out of the hospital, separations from her beloved siblings, pain, fear, surgeries, and medications over and over again. But instead of moving toward the hope of healing, we would all knowingly be moving toward the end of her life and watching her suffer from continually declining lung function and quality of life. That put things into perspective for sure.
So while Lilyan was outside in the sunshine today, waiting for her Motrin to start bringing her fever down as her doting sisters walked her around the neighborhood in her hospital-issued wheelchair (her old one no longer fits her re-formed trunk), I spent a little time going back through photos taken of Lilyan since her homecoming in June, 2014.
I wish so much that we had thought to deliberately get before and after pictures, but even these that I found are pretty shocking to us and remind us that, once we get through this hard season, it’s going to be so worth it for our girl! Her chest no longer rests on the floor when she sits, and this is one of the major changes that will save her life now.
Front views before surgery:
Front views after surgery:
Side views before surgery:
Side view after surgery:
So, no matter how much harder it might get from here, we once again feel confident that we did not make the wrong choice for our girl. And we are so thankful to be so close to a hospital with such gifted doctors who still feel it’s worth the hard stuff, and even the risks, to give our daughter this chance at a better life. There are other hospitals around the country that have decided it’s too risky to continue attempting these surgeries for children like Lilyan.
Here are a couple of fun shots of the kids playing outside together in between the rainy days we seem to have so many of right now. We are continually saying aloud to each other just how thankful we are to be at home at this moment even though the battle for health and healing rages on.
Praying daily for Lilyan and the whole Rosenow family!
This post made me cry. I’ve prayed daily for your sweet Lilyan since she was introduced. I love your little girl, and it is so wonderful how the Doctors were able to help her. God is amazing.
You have made the right choice– no doubt here. You both are wonderful parents and I know that you would only do the best for all of your children. Kathy– you are a walking miracle. I am blessed to have windows into your life through your posts– and to have had the opportunity to watch your family grow and unfold over the years. The change in Lilyan’s condition is astonishing! I will continue to pray for you all. Well done–take heart–you are doing a GOOD JOB (even on the days you feel you aren’t). Love to you my friend. Always.
Spine problem was causing any disability or pain to her? Any improvement in movement after doing surgery? My daughter has same back problems, we are planning for leg surgery now not in favour of spine surgery.
She actually has three spine problems, all related to incomplete formation of the spine during her early development in the womb. She was born with sacral agenesis, severe spina bifida, and severe kyphosis. The combination of these three disabilities was causing her significant disability—she is paralyzed from the waist down—but not a lot of pain. Sometimes she felt pain because of the kyphosis, but not all the time. The surgery she just went through was to correct the kyphosis, not the sacral agenesis or the spina bifida. So the surgery included a laminectomy, a chordectomy, a kyphectomy, complete vertebral fusion, and placement of stabilizing rods the length of her spine, with a significant closure by plastic surgeons. Her current problems are now caused by an infection in that incision, which is one of several huge risks involved in this surgery, which involved 14 hours in the OR. The improvement we’re seeing is in how straight her spine is now, and the removal of the threat of death due to skin breakdown at the gibbous (the hump caused by the kyphosis) and eventual suffocation due to restrictive lung disease, caused also by the kyphosis. We expect her movement to remain the same once she heals, which was the ability to propel her own wheelchair and to pull herself through the house on her stomach while playing with her many brothers and sisters, using her arms and her strong upper body strength. We weren’t aiming for anything different with her movement – only trying to save her life.
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Loved the pictures, and the medical explanation of what was done and why. May God sustain you, (we both know He will!), and give you rest and peace.
On Mon, Apr 29, 2019 at 9:50 AM Where Love Learns Its Lessons wrote:
> kmrosenow commented: “She actually has three spine problems, all related > to incomplete formation of the spine during her early development in the > womb. She was born with sacral agenesis, severe spina bifida, and severe > kyphosis. The combination of these three disabilities was ” >
Hi, I have just read your story of your beautiful little girl, my daughters conditions are almost identical to your daughters and we are in the dilemma of trying to find someone who will help her and perform the spinal surgery. I would love to speak to you about your journey if you are happy to email me?
Thoughts and prayers sent to you and your beautiful family.
Hi Sharon. I will be happy to try to reach you. We are still drowning in many medical issues with several children, but can you give me your email address, and I will write to you as soon as possible.
Hi, thank you so much for reaching out to me.
Please don’t rush to reply I know only too well how hard life is when you have lots going on medically and living between hospital, home whilst dealing with family life too.
I’ve read a small portion of your story and wow I am blown away with all you do for your wonderful children!
We live in the UK but no hospital here can do the surgery so we have decided to seek a second opinion in the US. We have approached Boston Children’s, Texas Children’s and children’s hospital of Philadelphia!so far and awaiting their response to our case file.
Please do email me when you get time my email is firstname.lastname@example.org
It would be lovely to speak with you as I am terrified of what’s to come if we go with surgery ( if we find someone to do it) but also terrified if we don’t find someone to do it. ,
Sharon – I just sent you an email. Let me know if you don’t get it. Many blessings on your day!