I was skimming through last year's blog a quick hot second before starting this one and besides everyone being a year older...not a whole lot has changed over here! 😆 So this year's post will attempt to highlight some small, yet noteworthy changes in our life!
Ari: 18 Months of FUN👶
My guess as to what has changed the most in our last year would have to be that instead of a six-month-old Ari, we now have an 18 month old Ari...which is kind of a BIG DEAL. This guy lives his days with the sole ambition of being ON TOP OF the kitchen table and emptying as many kitchen drawers and cupboards as humanly possible. He is still such a happy guy for the most part, but has mastered the "art" of the tantrum. I have NO IDEA where he learned it from (Bo doesn't know either). He is a mischievous, rascally (but cute) little booger that has earned the nickname of "brudder" from his sibs. His "Gampa" Geertsma calls him "proud foot" (LOTR fans will understand) because he insists on sitting in his high chair with one foot proudly planted up on his tray...and has done so since his initiation to high chair life.
💔Saying Goodbye to Jack💔
We sadly lost our sweet golden doodle friend, "Jack" in early spring this last year. My kids don't remember a life without him in it and it was a TOUGH few weeks for our family. We knew Jack was on his way out so we made the agonizing decision to cut his suffering short. We all took him on a tour of our new property and told him all of the plans for the future. I think he approved of it all. Jack is buried on our new land, in his own beautiful little corner. The kids honored his life with pictures, cards, letters - and quite a few tears. He continues to be missed in our home...especially when we are craving one of those big ol' Jack cuddles on the couch.
Preparing to Move🏡
We are currently in the process getting our house ready to put on the market in early spring. It's a big task to undertake and I can't say it doesn't feel like a daunting undertaking. So many projects, so little time...so many kids living in the house with all the projects...it's a lot.
We hope to begin building our house in the spring as well and greatly anticipate that project as we have designed a space that will truly accommodate our family and provide solutions to meet Emri's particular needs. Having a house where she can freely roll her chair around will give her more freedom and comfort and hopefully make life a little less complicated.
Hopkins Visit and Emri's Appointments🚐
We journeyed to Hopkins in early November and saw all of Emri's specialists.
👀Emri's eyesite remains stable with contacts. Last year we were told that we may need to start eye drops to control/slow/stop the growth of Emri's eyes in an attempt to lower her risk of retinal detachment that is prevalent in infantile marfan kids. After her latest measurements showed a decent amount of eye growth, we are moving forward with starting eye drops soon. We are awaiting a telehealth appointment with Emri's eye doctor to gather more details on the type of drop we will be using
.
🩻We were devastated to hear that Emri's orthopedic surgeon was no longer at Hopkins, which necessitated us to see TWO new specialists in his place. Doctor Sponseller oversaw all of Emri's orthopedic care at Hopkins, but we now see one orthopedic doc for Emri's spine, and another for her legs. The spine doc that we saw actually successfully lengthened Emri's spinal rods which we were thankful for, not knowing exactly how much room she has to grow with this current set of rods. We know that Emri is due for her final spinal fusion at any time, but have decided that since she is still getting successful lengthenings, we do not need to rush into a final fusion. We do anticipate the fusion to happen within the next year or two.
🦽Emri's legs are...just...complicated. There are things that can be done in HOPES that she could become more stable on her feet, but there are no absolutes with any of the surgical options. The options of what can be done are daunting and not exactly straightforward. It has been difficult to consider everything Emri would have to go through in order to MAYBE have a chance at walking again---and therefore the decision on how to proceed has not been made. Ultimately Emri is at an age where we will be having honest conversations with her and allowing her to decide on how she would like to proceed, but none of this is easy and we would greatly appreciate prayers surrounding this particular issue.
💖We once again received a stable heart report from Emri's cardiologist. The relief that comes with the word "stable" is monumental. There are not many moments in my life that I feel such a tremendous wave of relief. We are so thankful to our Lord for such a long period of time with so many stable reports. Emri is on 2 medications that we attribute to keeping her heart going steady for so long, but we have painfully witnessed many marfan friends go through intensive heart surgery/surgeries despite being on the same medications - and we are just thankful that Emri, now FIFTEEN, has not yet needed a heart surgery.
Hibernation❄
Along with the cold weather that moved into KY this fall, we faced 2 big viruses that took Emri down back to back. Those 2 viruses, along with our past 15 years of "sick-sperience" with Emri, necessitated us to make an earlier-than-normal decision to begin hibernating for the winter. Emri getting sick...even with the "common cold", as I have repeated over the years, is always much more detrimental to her body than most realize. As hard as we work to get nutrients in and weight on, a cold will have her down 5 pounds in 3 days and her O2 consistently dipping into the 80's. It is just so stressful every time. We feel like we have a good system and most of the necessary "tools" to cope here, at home, and have avoided ER visits for a while. But needless to say, this is NOT our favorite time of year.
Embracing the Chaos💃
If any of you know me personally, I like doing all the things, seeing all the people, and being all of the places. Being home together for long periods of time as the winter days grow longer, darker and colder is something that was forced upon us by our circumstances. I can truly say, however, that I am thankful for it. There are the days when Ari is being taken off of the kitchen table for the 27th time, Bo has spread his hot wheels cars all over the kitchen floor, the bowl of eggs I am holding falls and breaks INSIDE of the open freezer drawer, and the older boys are doing their very darndest to break themselves, my ear drums or the house....but stepping back, I would not want it ANY OTHER WAY. I am so thankful. SO thankful for all of it. I won't say I handle it all with grace or serenity all of the time, but I WILL say that in the end, God has blessed this home abundantly. All of the precious people inside of this home are changing and growing and stretching together. God has us here, in these circumstances for His purposes...to know that and dwell on it has changed me greatly over the years.
A Word for the New Year🎇
Thank you friends, for the visit to the blog and for sticking with me this far. This blog began, in its infancy, to update you all on Emri's medical journey and we are just thankful that this space is currently acting as a yearly check-in of sorts and that we have not had reason to update it more frequently, like we have in the past during medical events.
As this year comes to a close and the chaos of the world rages on around us, I implore you to join me in looking inward and upward. Search your heart and see where your affections truly lie. Lift your face away from this earth and direct your gaze on the things above. Join me in ending 2025 and beginning 2026 with this sweet truth from Philippians 4.
"Rejoice in the Lord always; again I will say, rejoice! Let your gentle spirit be known to all people. The Lord is near. Do not be anxious about anything, but in everything by prayer and pleading with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and minds in Christ Jesus.
Finally, brothers and sisters, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence and if anything worthy of praise, think about these things. As for the things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you." Philippians 4:4-9
My prayer is that I live out this verse in the coming year...that I take these sacred words to heart and make them my life. To God be all the Glory and Honor!
Enjoy just a few (😅) pics below as I sift through the past year of happenings! What a life!
.jpg)
.jpg)
No comments:
Post a Comment