It has been a very long while since I have posted anything. Life has been very good to us lately, keeping us busy in great ways. I saw this post above on Facebook and wanted to write and again out loud thank God for the life he has blessed me with. Its not always easy and can be very overwhelming, especially for me, but God undoubtedly meets me in every situation in big and small ways.
I specifically have been blessed with new and old wonderful relationships. We have met some really amazing people throughout the past two years with our situation. We have an amazing support system with Clara, that I know the Lord orchestrated. We have been blessed with the same nurses for over two years, and have recently acquired new faces. It sounds totally awkard I know to think of people in and out of your home all the time (especially when you sleep) but it can work. I think our family has thrived because of our home health nurses, as well as from her therapists. We recently lost Clara's primary nurse "Joni" and I have to admit...I grieved hard her having to leave. We were all so attached. However I immediately began to pray and two months later God provided for us. I knew He would.
May 6-12 is National Nurses week. So I want to especially just thank our team now, as well as her NICU nurses that started our journey almost three years ago. We have survived and gained so much love because of you. Thank you for keeping our Clara healthy and happy!
Our M is doing amazing. She has loved second grade, at her new school with an outstanding teacher. She is recently ending spring softball, which she has rocked at. She's had her first homerun, went to her first tournament championship, and has played with an amazing group of girls. When I watch them play, I think WOW what was I doing at 8 years old. They play so hard. It has been a blast watching get better and just love the game.
Her T1D has been a roller coaster ride lately. A numbers game is what I call it. We have tried different ratios and lantus nightly doses,and we just can't figure it out. Also the heat, exercise, and playing ball makes a difference any given day. She has since October worn a continuous glucose monitor (CGM). That has helped especially with lows. We hope this summer (when school is out and we can breath) to check out some specific insulin pumps. Her endocrinologist said she would be a good candidate for one.
Jason was recently promoted with the fire department. He has changed stations and shifts. I am just so proud of him. In this midst of everything he set his mind to faithfully study and pass. Just another example of how he is a wonderful provider. He is just so committed to all of us and is a loving father. They both delight in seeing him come home after being away. Clara never takes her eyes off him. He is our rock.
Our Clara just had her first haircut just a few days ago and still has the most brilliant smile. She is also doing amazing and sailed through winter without getting sick and hospitalized. She is a year and two months seizure free. We recently did another EEG with her, that concluded that However it did discovered that there is still potential for other types of seizures. So she will stay on maintenance seizure medication, probably forever.
Clara will soon age out of the early intervention program and will transfer into being served by the school system. We are starting the process of preschool within an elementary school. This summer she will go through an assessment, then a team will meet to see what class and for how long she will qualify for. I am not 100% sure this is something we will pursue for next school year, but I wanted to just see where it would take us. Clara is just really social and would benefit from some time away from home with other kids. However she will still have a trach, and with that combination comes germs and sickness. We will just see. Through prayer and lots of conversations with God I just ask for Him to make a way for it to happen if its supposed too right now. Also that he would provide a loving program that she would fit into, with wonderful teachers that would care for and support her.
Leaving the CDSA also means giving back equipment and toys that Clara has borrowed. We have been slowly purchasing her own adaptive equipment through our insurance and the CAPC program. However we are still working on getting a few more pieces, such as a crawler (which she loves), a gait trainer, and a car seat. Clara PT is great at helping us get these things to help meet her needs as well as our own.
Right now she is scheduled to have a double staged Laryngotrachaeal Reconstruction (LTR) on June 24th. That involves a repair to her extremely narrow airway with the trach left in place for the healing process. A small stent will be placed in at the time and taken out weeks later. Her hospital stay could be for days, up to a week. The trach will stay in for months longer and come out when the time is ready. This is what we have been waiting for. This surgery is one huge leap forward.
As you can imagine I am super anxious about it. As the weeks and days come closer, I will even more so. This surgery, her 6th so far, will be several hours. It never gets easy watching your child go under anesthesia. Please just pray now specifically for for healthy weeks ahead, so that this can really happen. We will know more June 8th at her pre op appointment.
We are all so ready for summer break, and for more time together home. We are super ready for things to slow down and to move ahead with whatever God plans for us. There are still times when I look at my plate and wonder if I am enough for all of this. I have written about this fear a lot. The needs of both girls can be high, especially with Clara. There is always something to work on with her, speech goals, OT and PT goals, stretches. I so want to just be it all, do it all, and in a way I still think I can make her better. "if I work really hard she'll soon sit, or use her hands better, or scoot and crawl. However it just doesn't work that way. Also... I have an eight year old who has homework and practice, and wants to play outside and read books with me. She has carbs that need counting and ratios to figure out on my phone for insulin. And I am their mom and I want to do it all, be really there for them.
I actually said to Jason recently I wish there were more hours in a day, to do it all and take care of me too. However..it is what it is. And when I feel too flawed from not doing it "all", I try really hard to just let it go, pray and remember how much the Lord loves me and us and sees everything Jason and I are both are doing for them. He will make it all for the good.
God is okay with me even when I'm not okay with me. His love isn't based on me. It's simply placed on me. And it's the place from which I must live.
Live loved beautiful friend.
- Lysa TerKeurst
- Lysa TerKeurst
Thank you for reading our long family updates, and more about me navigating through it all with a thankful heart
Happy Beautiful Saturday.
love- Courtney
Clara's first ever haircut. She was very brave but kinda got scared a few times.
Maddie and I were able to sneak away for 24 hours for a mother and daughter retreat with our church. That experience was special to me.
Clara had the beeping egg hunt at the Governor Morehead school. She could listen and loom for the eggs. Very cool.
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