The days can feel so long, but goodness, the weeks fly by!
Let's give a little update :)
Isla:
So, many of you have asked how Isla is doing since surgery. Thank you for reaching out.
Last surgery was a big one. The revision surgery (replacing her VEPTR rod with a bigger one) was successful, the hospital recovery was really rough, and recovery at home not easy, but she is doing SO well. Her incision healed well with no infection. PRAISE GOD!!!!! This truly is remarkable! We are so very grateful she recovered well. Isla is so determined and so full of joy. She is shy, yet adventurous!
Isla has had some big milestones these past six months. She has been blossoming in her speech - and makes us smile every day with all she has to say! Isla has been conquering potty training! It is amazing to see her able to understand more each day! Isla moved from her crib to a big girl bed! Isla LOVES Thomas the train, riding her balance bike (she is fast!) Isla loves going on walks, playing at the park, and going to the pool! She loves playing with games and doing puzzles! She LOVES music and singing together as a fam...especially worship music, which is so sweet to hear!
Isla will be celebrating a birthday in less than a week and we are in awe of God's goodness in her life and celebrating big (She requested a Thomas the Train, flowers, and rainbow bday 😄)! It is such a miracle she is turning 5! We cannot wait to celebrate her!
Isla has had many doctor appointments, therapy visits, and a few procedures/tests these past months.
There has been some new concerns for Isla, regarding her weight. There is still concern about her swallowing and possible reinjury of her vocal cord with surgeries. We would love prayer for wisdom and clarity on what is BEST for Isla. God has lead us in every way with Isla's needs and we trust he will continue to in these days ahead. We are planning for Isla's next surgery (expansion of both of her VEPTRs) that will take place in later August. This will be VEPTR surgery number 8.
Isla has had many doctor appointments, therapy visits, and a few procedures/tests these past months.
There has been some new concerns for Isla, regarding her weight. There is still concern about her swallowing and possible reinjury of her vocal cord with surgeries. We would love prayer for wisdom and clarity on what is BEST for Isla. God has lead us in every way with Isla's needs and we trust he will continue to in these days ahead. We are planning for Isla's next surgery (expansion of both of her VEPTRs) that will take place in later August. This will be VEPTR surgery number 8.
Zeke:
Zeke continues to be such a bright light in our days. His attitude is one of optimism, strength, and love.
We got to celebrate our fav little guy turning 8 in July! Oh, how we love to celebrate him! He asked for an "Adventure" bday! So fun! We got to adventure to Fort Casey and spend the day at the beach. Zeke LOVES adventure and exploring the outdoors!
Z loves to ride his bike and ride his skateboard. He continues to be a Lego master and his creativity is so fun to see. He has quite the engineering mind and is always wanting to try building things and watching them function! Zeke LOVES the pool...still a fishie in the water! He has conquered the Monopoly game and is always strategizing the moves he will make the next time we play. I try to strategize having the energy to just play the lengthy game...HA!
Zeke was able to attend kids camp through church and had the BEST time! The theme was Fearless...from 2 Timothy 1:7 - For God has not given us a spirit of fear but of power, love, and self-control. So good!
Zeke's bone grafting surgery for his bilateral cleft in his jawline had been put on hold for now. We were able to wait a bit more while Z's teeth continue to grow and move. We will check in with his team for this again this Fall. It was a relief for all of us to be able to hold off with that this summer.
Zeke has been struggling with a breathing issue that we are trying to figure out. So far, we are realizing it is not connected to his asthma. Over this past year he has seen countless medical teams and been through testing and we are still on the journey to pinpoint this issue and find the best help for him. He has been SUCH a trooper through it all...always staying joyful and brave through the journey. Please pray that we can figure out the exact issue that is going on.
He will have another procedure next week and we hope it give us clarity for him. He is also seeing a breathing therapist tomorrow to evaluate and consult about this issue, too.
Justin & Molly:
J is doing well, yet surely feels the weight of our days. There are so many moving parts to keep up with in our fam. We are so thankful for all his help and his desire to keep focused on the Lord to help us with it all. Justin took on a HUGE project of changing our car's transmission and timing chains. I AM SO PROUD OF HIM! Figuring out this task and making it happen was no small feat! For those that don't know, changing a transmission is no small thing. It took A LOT of planning and work. THE whole front of the car was taken apart and the engine had to be pulled out of the car! We are SO GRATEFUL that J had some help for a couple days from his brother (who flew here to help!!) and a friend from here in WA. This job was weighing on J for a long time and we are so grateful for this to be done, knowing our car is reliable now. WAY TO GO, J!
J has had to work some overtime here and there. Our schedule has some really exhausting weeks.
We are so grateful for days here and there that take a break from the medical hustle and leave room to rest and breathe...and even have some fun together!
We are soaking up family time as much as we are able this summer!
Zeke continues to be such a bright light in our days. His attitude is one of optimism, strength, and love.
We got to celebrate our fav little guy turning 8 in July! Oh, how we love to celebrate him! He asked for an "Adventure" bday! So fun! We got to adventure to Fort Casey and spend the day at the beach. Zeke LOVES adventure and exploring the outdoors!
Z loves to ride his bike and ride his skateboard. He continues to be a Lego master and his creativity is so fun to see. He has quite the engineering mind and is always wanting to try building things and watching them function! Zeke LOVES the pool...still a fishie in the water! He has conquered the Monopoly game and is always strategizing the moves he will make the next time we play. I try to strategize having the energy to just play the lengthy game...HA!
Zeke was able to attend kids camp through church and had the BEST time! The theme was Fearless...from 2 Timothy 1:7 - For God has not given us a spirit of fear but of power, love, and self-control. So good!
Zeke's bone grafting surgery for his bilateral cleft in his jawline had been put on hold for now. We were able to wait a bit more while Z's teeth continue to grow and move. We will check in with his team for this again this Fall. It was a relief for all of us to be able to hold off with that this summer.
Zeke has been struggling with a breathing issue that we are trying to figure out. So far, we are realizing it is not connected to his asthma. Over this past year he has seen countless medical teams and been through testing and we are still on the journey to pinpoint this issue and find the best help for him. He has been SUCH a trooper through it all...always staying joyful and brave through the journey. Please pray that we can figure out the exact issue that is going on.
He will have another procedure next week and we hope it give us clarity for him. He is also seeing a breathing therapist tomorrow to evaluate and consult about this issue, too.
Justin & Molly:
J is doing well, yet surely feels the weight of our days. There are so many moving parts to keep up with in our fam. We are so thankful for all his help and his desire to keep focused on the Lord to help us with it all. Justin took on a HUGE project of changing our car's transmission and timing chains. I AM SO PROUD OF HIM! Figuring out this task and making it happen was no small feat! For those that don't know, changing a transmission is no small thing. It took A LOT of planning and work. THE whole front of the car was taken apart and the engine had to be pulled out of the car! We are SO GRATEFUL that J had some help for a couple days from his brother (who flew here to help!!) and a friend from here in WA. This job was weighing on J for a long time and we are so grateful for this to be done, knowing our car is reliable now. WAY TO GO, J!
J has had to work some overtime here and there. Our schedule has some really exhausting weeks.
We are so grateful for days here and there that take a break from the medical hustle and leave room to rest and breathe...and even have some fun together!
We are soaking up family time as much as we are able this summer!
I (Molly) am keepin' on, keepin' on!
My days are very up and down as far as my health goes. Never feel fantastic, but so thankful that I am not at my worst every single day. I've had some victory with one of my treatments and some really difficult reactions to another treatment that took a very big toll on my body. My doctors continue to keep a close eye on me and we just keep taking steps ahead in faith that we will have more answers when the time is right. We are so grateful for what we do know and so grateful that I am getting some positive response in some ways. I do not want to paint a picture that it is easy. I can have days that feel defeating, for sure. The symptoms can sometimes feel much stronger than I feel I can physically fight through in a day...yet I'm doing it! Praise God for his strength and help! Honestly...I feel his faithfulness DAILY and am so thankful for the joy through him as I walk this road of chronic health issues.
I'm prepping for our school year coming up. So much to think through and decide on. We are very excited for our school year ahead and I just pray for wisdom as we balance school and appointments. It can feel so overwhelming at times. Really a struggle to know how to do all the appointments, school, and have time and energy for getting out with friends (we miss friends and NEED this time with them so badly!). Just need to take things one day at a time!
All in all, we are good. We are very exhausted, have times of feeling so lonely and weary, and we fight for joy. There is always much to be grateful for and we keep growing in faith through this all.
We feel like that is our often repeated answer when we are asked how we are..."weary yet still fighting for joy". We know this will continue to be our story and we also know that God had and has a huge plan in all of this. We never want to lose sight of that. In chaos, it can feel difficult to feel content or not worry. But, he goes before us and behind us and in HIM all things hold together. So, by his grace, we can press into his truth and rest in his promises. We choose JOY.
This summer marks 15 years of J and I dating and this month marks 13 years since he asked me for a life forever with him! Wow...look at all that has happened since then! We keep reminiscing and recounting all that God has done. God is SO good. Together we have faced some very difficult circumstances. But, through it God has grown our perspective in life and we have felt such deep love from the Lord. We continue to take our days just one at a time and amidst all the stressful days - we LOVE the sweet moments we get to spend together. There is joy even in the tough circumstances. We continue to see God at work in our story and cannot deny his faithfulness.
My days are very up and down as far as my health goes. Never feel fantastic, but so thankful that I am not at my worst every single day. I've had some victory with one of my treatments and some really difficult reactions to another treatment that took a very big toll on my body. My doctors continue to keep a close eye on me and we just keep taking steps ahead in faith that we will have more answers when the time is right. We are so grateful for what we do know and so grateful that I am getting some positive response in some ways. I do not want to paint a picture that it is easy. I can have days that feel defeating, for sure. The symptoms can sometimes feel much stronger than I feel I can physically fight through in a day...yet I'm doing it! Praise God for his strength and help! Honestly...I feel his faithfulness DAILY and am so thankful for the joy through him as I walk this road of chronic health issues.
I'm prepping for our school year coming up. So much to think through and decide on. We are very excited for our school year ahead and I just pray for wisdom as we balance school and appointments. It can feel so overwhelming at times. Really a struggle to know how to do all the appointments, school, and have time and energy for getting out with friends (we miss friends and NEED this time with them so badly!). Just need to take things one day at a time!
All in all, we are good. We are very exhausted, have times of feeling so lonely and weary, and we fight for joy. There is always much to be grateful for and we keep growing in faith through this all.
We feel like that is our often repeated answer when we are asked how we are..."weary yet still fighting for joy". We know this will continue to be our story and we also know that God had and has a huge plan in all of this. We never want to lose sight of that. In chaos, it can feel difficult to feel content or not worry. But, he goes before us and behind us and in HIM all things hold together. So, by his grace, we can press into his truth and rest in his promises. We choose JOY.
This summer marks 15 years of J and I dating and this month marks 13 years since he asked me for a life forever with him! Wow...look at all that has happened since then! We keep reminiscing and recounting all that God has done. God is SO good. Together we have faced some very difficult circumstances. But, through it God has grown our perspective in life and we have felt such deep love from the Lord. We continue to take our days just one at a time and amidst all the stressful days - we LOVE the sweet moments we get to spend together. There is joy even in the tough circumstances. We continue to see God at work in our story and cannot deny his faithfulness.
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| Love this man, so very much |
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Please be praying for Isla and our family with her upcoming surgery. Please pray for us all to stay healthy for surgery time and for safe and smooth flights for us as we travel across the country again. Please pray for peace for Isla's heart and mind. She truly understands so much and nothing is lost on her. She remembers so much and this is not easy for her. Isla knows what is coming when we arrive in Philadelphia and begs with tears to go home. Last hospital stay was so traumatic for her. Please pray for her surgeon and medical team - for a successful expansion surgery of her VEPTRs. There are so many details and decisions that go into each surgery time...so we ask for prayer for wisdom and clarity.
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| To know people are praying is such a gift to us. It is truly so encouraging! THANK YOU! |
I do remember to pray for you all. I am always inspired by your faith in God and try to continue to grow, as I am inspired by you. I to have some chronic pain that can't be helped and I am really inspired by your attitude. Now I am trying to be comforted by "peace is in the pain". Acceptence is hard to live with but I try to remember Paul. I thank you for what you share and want you to know what an inspiration you, well all of you, are to me. God Bless You All
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