Anyone who knows me will hear the phrase, “I like setting goals” as an understatement. The amount of joy I get from making a list of plans is truly ridiculous. It’s my favorite thing about New Year’s day and a refreshed list is the reason I don’t mind Monday mornings. I’m not sure when this love started but it’s been going on for a loooong time.
Little’s atypical development first became evident before she was even four months old. She was diagnosed with Agenesis of the Corpus Callosum at a year and setting goals took on a new level of intensity. I would sit down every six months and pull out the book that listed developmental milestones. I would write down the next set, or move forward those that had yet to be met, and think through ways that we could work with Little to move her forward. Initially there were a lot of phone calls to organizations and therapists who were then able to give us clear directions and specific actions that would help our Little
as she grew and developed.
Together with her speech therapist we taught her how to chew. Together with the physical therapist we taught her to crawl, sit, stand, and eventually walk. There was occupational therapy, listening therapy, aqua therapy, music therapy, developmental therapy, and hippo-therapy (horses)! For years there was always another goal to meet, always another milestone to aim for, always a plan to work.
This past January I sat down to do my prayer and planning time and I felt convicted about the lack of effort I had been putting into the development of my children. 2017 felt like such a waste of a year; back pain had kept me laying flat for most of the duration and I felt my family had paid a high price. I prayed. I planned. I wrote pretty goals. . . somewhere. I can’t for the life of me remember where I put all this work and beauty. I only remember that I told Jeremy, “I really feel like Little has been floating along and I have lowered my expectations for her. This year needs to be different. I want to be more purposeful and more present when it comes to Little in 2018.” Good grief.
The irony that I can’t find my plan for 2018 is not lost on me; suffice it to say that the reality looks nothing like the dream anyway. Each week I find myself sitting with my planner and a list of phone calls that need to be made; calls to people who can give us clear directions and specific actions that will help our Little in this new stage of growth and development. I find myself needing to be very purposeful and remarkably present! Where there were once therapists of all shapes and sizes, the calls now include Cardiologists, Orthopedists, Dentists, and Medical Supply companies! And just as the Lord put people the right people for the right time into our lives in all those early years, He is leading us to His right choices once again.
Little had her MRI on April 10 and the Anesthesiologist/Cardiologist was unbelievable. He spelled out all the risks for me and spoke with compassion and transparency. It was amazing to hear what he would be doing over the course of the “study” (stopping Little’s lungs so that clear images could be taken of her heart and then restarting her lungs to allow a couple of minutes of breathing before stopping them again, etc.). Hearing this had the potential to be terrifying but he calmly assured me that my daughter would be under his constant watch and care. The “study” was supposed to take 1.5 hours but ended up taking three and he made sure to keep me updated and then came out personally to fill me in on her condition and how everything had gone. I had been watching and that had NOT been happening for others in the waiting room. Dr. Nichols was HIS right choice for us.
The Director of the Cardiomyopathy Program was on call when Little was first admitted to Children’s back in February and so she has been on Little’s case ever since. During the MRI, Dr. Miyamoto came to check on Little twice and even sat with me for a bit to talk about how I was doing and how I was feeling about where we are in Little’s treatment. She is HIS wonderful right choice for us and you can “meet” her here:
We had our check-up with Dr. Miyamoto this past Wednesday and discussed the results of Little’s MRI. The brain scan showed that she still has no corpus callosum *wink*. The scan of Little’s big heart confirmed that the left ventricle is operating at 25% and the right ventricle is operating at 30%. The characteristics that they were looking for to determine if she had a specific heart disease were not present so… she does not have Right Ventricular Hypertrophy and we are glad for that. This does mean that we still don’t have any more understanding of what and why this is happening and during this visit the doctors became more concerned about Little’s lungs.
The phone calls I have been making this week have included calls to the scheduler at Children’s so that we could schedule a Heart Catheter. There have been calls to several PA’s in the heart clinic and we have been working with Little’s meds to try to get excess fluid out of her lungs and get her ready to be put to sleep again this Friday. They will insert the catheter through an artery in her hip and follow it up to her heart. The purpose is to measure the pressure in her heart and her lungs. There are risks that come with this procedure, the anesthesia being the greatest one. Please pray that Little’s heart will maintain a steady beat and that the doctor will be able to get a quick and accurate reading. (We just found out today that Dr. Miyamoto will be doing the procedure and my heart rejoiced.)
We are taking a bag with us on Friday. The doctor says that the procedure could be quick and the results could be encouraging which would end in us going home. Depending on the pressure readings, we could end up staying at the hospital as they consider treatment and next steps. Either way, the doctor believes that this “heart cath” will enable us to have a better picture of Little’s prognosis and help determine clear directions and specific actions as we continue to walk through 2018.
More calls have been made and more will be made tomorrow but this post has gotten exorbitantly long! Remember to pray for Little when you brush your teeth… and in that vein come back to read a great story about a phone call with HIS right dentist.
please give Little a hug from me and tell her I am praying for her. Also, give Thomas and KB a hug too nd let them know I pray for them also.
Know i am praying for little and all the family. May u all feel the warmth of my embrace through my prayers. Love all of u!!!
well, your Uncle James told.you people were looking for updates so they could pray specifically for you all. Guess this qualifies as an UPDATE!! More importantly it also shows where He has already answered so many prayers. I believe not only have the right people come along for you guys, but you guys are the right people to come along for them. Just remember as you can to speak boldly for The One who is leading this direction. Love you all so much
I love you and I love Little. So thankful for God’s provisions for you both. Thankful for the update too. You’re a delightful writer.
I love you so much and I’m praying for you big time.
What a scary series of events y’all have been through, but oh what a magnificent God we serve who puts all the right people in place, reminding us that HE’S got Little and the Kicklighter’s in his hands. Thank you for the updates, you are a wonderful writer. Will be praying for y’all.
Thank you for the link. I didn’t know her story. Bless you all. We’re praying for great results and for your spirits to be refreshed.
We will be praying for Lily and for peace for her parents. She’s in HIS hands and HE loves her! I do too!
Becky – we love you, your Little, your whole family so much! And take comfort knowing that God loves you even more! What joy I have in reading how He has been caring for you and providing jus the right person/persons at the right time… We will continue in prayer.
Sending you, your family, and your LIttle specific prayers and blessings. Much love to all of you.