Today was a tough day. I mentioned the care conference we would be having with neurology today. I’ve also thought no matter what they said I wouldn’t allow myself to get upset, because these boys have already proven they don’t always follow the rules. And an MRI doesn’t define them.
But no matter how prepared I am, or strong I want to be, I can only put on a brave face for so long while a room of highly intelligent, very educated, experienced doctors tell us our boys will not walk or talk, and won’t live long.
We’ve heard that before. That was the prognosis from the moment we first heard “Lissencephaly”. So this wasn’t new news. It’s just so hard to look at these beautiful, precious boys and accept that prognosis is even possible.
Oddly enough, the MRI images contained a lot of good news:
- The MRI did show some sulcation (wrinkling). (Just not nearly as much as it should have.)
- The Vermis is actually fully present, just undersized. With the extra fluid in their brains the ultrasound didn’t reveal it all. Ironically, that might mean they technically don’t even have the Dandy Walker Malformation that kicked off this crazy journey after all.
- Their mid brain looks great.
- Their entire brain stem looks great.
- The corpus callosum is partially present (near the front).
But in spite of all that…the Lissencephaly is still very ominous. And the other things are less relevant. The boys have a lot of fluid in their brains, and it is NOT due to a plumbing problem. (Which is why we haven’t seen a spike in fluid.) Instead, it is more of a space filler…to make up for the lack of brain. In particular, they are missing a lot of cerebral cortex.
The pediatric neurologist suspects Lissencephaly type 1. If that’s the case, the life expectancy is 3 months to 2 years, with death likely being due to aspiration or recurrent pneumonia. They are running another genetic test on chromosome 17 to look for this. I mentioned that we had normal results on the genetic testing that looked for quantity issues (too many or too few of a particular item). THIS will look for a rearrangement, or a “spelling” error if you will. Those results likely won’t be back for 4-6 long weeks.
Even if that comes back normal, she did not see a “good” scenario being likely. Their life expectancy might increase a little, but she does not feel they will have a normal quality of life. Liss 1 or not, she suspects the boys will not walk or talk.
She admitted that the results are likely skewed toward the worst cases. But she can only speak to the data that is out there. One child in her care with Liss type 1 lived to the age of 9. We don’t know how long our boys have, or if we can prove all of this wrong and rewrite the medical book.
All we can do is keep on surrounding them with love, and celebrating every moment we can.
- Yesterday, L was crying (the first time I heard a real cry from him) and when I picked him up, he was comforted.
- For the MRI, they unhooked the boys and used special MRI monitors. So I was able to carry N, cord free, for 20 feet. It felt wonderful.
- We recorded a “Sounds of Love” cd with a few songs, and J and I reading them some stories. They gave us a little speaker and a CD player so we could play it in their isolette. Both of them turned their faces towards it, and L inched his little nose closer.
At the end of the day, our love is strong, our boys are precious, and God is still good.
Jeanne Snyder said:
L and N are so precious and I’m thankful to God for this sweet time (amidst all that is tearful) that your family has together …you and Justin are just the mommy and daddy God chose for these special boys…and we continue to pray for you all in this journey of faith that is revealing over and over that God is good and that your love for these babies and for their Creator is undeniable. Hugs~
Kelee Garmong said:
God Bless you all and keep you strong! Praying for your strength as well as the boys. Praying for understanding, as well. You have a couple beautiful babies there…enjoy every moment! I believe that these boys may just rewrite the medical books!!
My heart breaks for you guys. Know I won’t stop praying regardless of what happens!
Kendra Grubinski said:
May God continue to be gracious to you as you walk through this. They are so precious.
Mel Rhodus said:
Hugs and prayers to all of you. Amid looking for the good news in what seems to be more bad news, I pray that your faith remains strong and you continue to have peace and comfort.
The title of your blog makes me think of the song “Tears are a Language God Understands” As the song says God weeps along with man and HE will take you by the hand!! Love and prayers continue for you, J and your boys!
Beverlee Dowdy said:
Lifting you Rinkers up higher and higher…. Your strength and faith is awesome and it is ok to shed and share the tears for whatever reason. We as humans, Mommy and Daddy, want our babies to be ok and prove the professionals, books, test……..to be wrong and it is such a booya feeling when it happens. 🙂 Enjoy every second you have with these cuties…..as every second grows into minutes, hours, you all have had days and started into your second week…..looking at a month before you know it. Looks like you are taking lots of pictures and I love seeing them.
I pray Karson is doing ok as well.
God has the first and last word – always and He will honor your faith.
Jackie Hornstein said:
My name is Jackie- I am Julia Wheeldon’s cousin. We have a 3 year old daughter, and a second daughter (Addison) who we found out at an 18 week ultrasound had a very rare birth defect and was given a 50% survival rate. I am following your story because I can’t believe how similar our journey’s have been. Same tests, waiting, agonizing, etc. I must tell you, you are doing yourself and friends and family a beautiful service by updating and informing folks about the boys- and perhaps more importantly writing how you feel. Addison gave us 8 beautiful weeks on this earth before she soared to Heaven. We were never able to hold her (too many machines, and too fragile). So I celebrated in the elation you must have felt getting to hold and carry one without all of those stupid wires!!! We enjoyed everyday and opportunity we had with her. Keep up your work as their parents and your faith as God’s servant. You will be given strength you never knew existed ( I don’t know how, God just gives it to you). I remember at rounds telling our 26 doctors that I trusted in the care they were providing- after all, they are doctors they know what they are looking FOR- but don’t forget, you are their mama and you know what you are looking AT. Trust your babies. Trust in God.