Let's share some of the happy-happenings from the last 6 months...
Isla turned 3 ❤ We praise God for each day and continue to pray for miracles in her days ahead! This birthday was very emotional for us. When Isla first came home, several doctors said she would not be alive at this point...but look at her!!! MIRACLE!
Oh, the joy God gave our family with this little fighter! She has endured so much and lives each day to the fullest! Full of smiles, giggles, sass-a-frass, energy, excitement, letting us know her thoughts, and loving so many little things each day. She gasps with joy, countless times a day as she experiences things...it is the cutest! She truly LOVES life and is so full of JOY!
This 2nd year of homeschooling has been a continued source of joy and fun for us. WE LOVE LEARNING! We joined a homeschool co-op, so on top of our normal routine of homeschooling, Zeke has been going to classes on Mondays. We have loved getting to know new friends and Zeke is loving his math and geography classes! I love the quality time that Zeke and I get to have together each day doing school. He is SO bright and eager to learn! Zeke continues to say his top three favorite subjects to learn are history, science, and math! He also loves art and creative time! Isla loves her learning time too! Her "school" is kept very light. She loves her alphabet, shapes, and colors! She also loves listening in on brother's school and saying often, "I do it too!" I'm so thankful to watch Zeke and Isla soak in all they are learning!! This is truly a blessing through our days...it is not to say it is always easy, but the opportunity to be together and learn together is priceless!
November 13 and December 15 are two very special days in our family...
Isla's Family Day 💜and Zeke's Family day 💙How blessed we are that we are Mommy and Daddy to these two.
We celebrated with cupcakes, hedgehog stroller rides, doughnuts, and the zoo...a few of their favorite things! What a gift to be a family!
In mid November, we decided we'd set up our Christmas tree early...not sure why, just felt like a good idea. Little did we know, I'd end up in the hospital mid Dec and not come home until Christmas Eve...so thankful we decided to decorate and start to celebrate Christmas early! Here is a glimpse of our Christmas cheer days!
Like I had mentioned in our prior blog update, I (Molly) have been struggling with some autoimmune issues. This Fall to Dec we were seeing a decline with my health and more symptoms increasing...
Autoimmune diseases are tricky. A treatment can be helping, but then all of the sudden not be working anymore. Trying new treatments take time. Sometimes a body will respond right away and sometimes it takes a very long time. Meanwhile, your body thinks something is bad about itself, that is actually good, and it attacks often - quite aggressively. I have started having symptoms of another possible auto immune disease (scleroderma) that I am fighting through but at this point it will be progression of symptoms of the disease that would confirm diagnosis. So we wait and watch and I may start another treatment for this. For all of this, I am working closely with doctors to try to figure it all out. It continues to be "puzzling" and like auto-immune issues, there is no one answer or treatment.
Autoimmune diseases are tricky. A treatment can be helping, but then all of the sudden not be working anymore. Trying new treatments take time. Sometimes a body will respond right away and sometimes it takes a very long time. Meanwhile, your body thinks something is bad about itself, that is actually good, and it attacks often - quite aggressively. I have started having symptoms of another possible auto immune disease (scleroderma) that I am fighting through but at this point it will be progression of symptoms of the disease that would confirm diagnosis. So we wait and watch and I may start another treatment for this. For all of this, I am working closely with doctors to try to figure it all out. It continues to be "puzzling" and like auto-immune issues, there is no one answer or treatment.
I was in a "flare" in mid Dec and felt (praise God!) that I should head to the ER. I went in thinking they will run bloodwork, give fluids, and maybe change my meds and I'd be headed home. Instead they did all that but also added a CT which showed I was in a severe flare. So, I was admitted to the hospital and started on strong treatments to fight my aggressive flare. It is crazy how there is such a battle inside and you cannot control it at all. You can do all the right things and it still can battle. I'm so thankful I went in and thankful for help in trying to heal.
I turned 37 during my hospital stay! My fam was so sweet and made it such a sweet day ❤ So much to be thankful for! I am incredibly grateful for Justin. He has been such a rock - supporting our family needs in all ways. Working so hard at work, working at home doing "all the things", taking care of the kiddos, running errands...this has been emotional for him and a lot on him. While it has been so stressful, he is constantly giving of himself to support us. His heart is one of gold and I am incredibly blessed by him. LOVE YOU, BABE!
Also want to thank my mom for flying out here to help us when I went into the hospital. She jumped right in, in any way needed and was such a great support for our family. LOVE YOU, MOM!
I turned 37 during my hospital stay! My fam was so sweet and made it such a sweet day ❤ So much to be thankful for! I am incredibly grateful for Justin. He has been such a rock - supporting our family needs in all ways. Working so hard at work, working at home doing "all the things", taking care of the kiddos, running errands...this has been emotional for him and a lot on him. While it has been so stressful, he is constantly giving of himself to support us. His heart is one of gold and I am incredibly blessed by him. LOVE YOU, BABE!
Also want to thank my mom for flying out here to help us when I went into the hospital. She jumped right in, in any way needed and was such a great support for our family. LOVE YOU, MOM!
I was in the hospital a week and sooooo thankful they let me go home on Christmas Eve.
I came home really weak and still unwell so I do not remember much of those Christmas days but I am so grateful, and do not take for granted, that I could be home with my family. Recovery has been extremely slow. I see bits of improvement but I have a long way to go. I have been on a new treatment but have yet to see or feel like it is actually working. My body is not responding too well to the new medications. One day at a time and keep stepping ahead! It has been crucial that I rest as much as possible to try to heal. I have a long recovery ahead. Please pray for a treatment to work and my body to gain strength!
We leave in about two weeks for Philadelphia for Isla's next surgery. From what we understand, the goal is to do one more set of expansions. Then, in 6 months, the next surgery will be the first of two revision surgeries: to re-do the V-Osteotomy (Cutting her rib fusion in a specific "V" way due to her re-fusing in those areas again) and replace her VEPTR rods with longer ones. We are praying for this surgery to be straightforward with no complications and that her surgeon and team is able to get this last expansion in and her VEPTRs hold up well prior to next surgery. We pray Isla will have a smooth recovery with no infection. We have been prepping for the trip and praying that we all stay healthy. No sickness, please!!! Flying across the country this time of year brings on some nerves...please pray we do not pick up any sick germs during our travels!
As we have mentioned before, Isla will continue to need surgery every approx. 6 months. The current goal, at this point, is for the VEPTRs to expand her ribcage so her tiny lungs can have a chance to grow. She has many other areas of her condition that are so complex but the main goal at this point is her lungs/breathing to survive. We still do not know what the future will hold, but we are in awe and so grateful that Isla has been thriving! We pray for the miracles to continue!
Please pray for Isla, her medical team, and our family!
We leave in about two weeks for Philadelphia for Isla's next surgery. From what we understand, the goal is to do one more set of expansions. Then, in 6 months, the next surgery will be the first of two revision surgeries: to re-do the V-Osteotomy (Cutting her rib fusion in a specific "V" way due to her re-fusing in those areas again) and replace her VEPTR rods with longer ones. We are praying for this surgery to be straightforward with no complications and that her surgeon and team is able to get this last expansion in and her VEPTRs hold up well prior to next surgery. We pray Isla will have a smooth recovery with no infection. We have been prepping for the trip and praying that we all stay healthy. No sickness, please!!! Flying across the country this time of year brings on some nerves...please pray we do not pick up any sick germs during our travels!
As we have mentioned before, Isla will continue to need surgery every approx. 6 months. The current goal, at this point, is for the VEPTRs to expand her ribcage so her tiny lungs can have a chance to grow. She has many other areas of her condition that are so complex but the main goal at this point is her lungs/breathing to survive. We still do not know what the future will hold, but we are in awe and so grateful that Isla has been thriving! We pray for the miracles to continue!
Please pray for Isla, her medical team, and our family!
So many great moments have happened these last months and there has been an equal amount of difficult circumstances too. Recently it has felt like a whirlwind of hard.
We keep finding ourselves on a journey of joy and hardship combined. We are so thankful for each day and every blessing and we continue to lean into the Lord for strength in the hard.
We continually take each day as it comes (our motto - one day at a time, his grace is sufficient), so thankful for God's grace, mercy, and faithfulness to face what is ahead. Goodness, do we need Him! He has held us and guided us up many mountains that have felt too big to climb. We praise him for the highs that take our breath away and the lows where we feel we have no more breath to breathe. When you go through really difficult circumstances, it can feel so heavy and hard. But, because of God, we know there is always hope and we are not alone. It grows our gratitude, it continues to give us a real perspective of what matters each day, and it pulls us into a deeper trust in Jesus. We have been in circumstances that feel so heavy and scary, yet we feel unshakable peace that we know comes from the Lord.
Sometimes the road feels so bumpy...more like a roller coaster gone wild...ha!
We feel stressed, anxious, exhausted, you name it...we are human! But...we know where to keep our focus and where our help comes from. We are processing so much from these last two years...we have a lot to work through emotionally, mentally, and physically. One day at a time - His grace is sufficient. and He is ever faithful. We are never alone - He is our refuge and strength! We step into 2020 with many things that concern us but hearts full of joy. Annnnd...we do not let a day go by without a dance party to "Never Give Up" by For King and Country...have you heard it? Listen...and dance...we promise it will make your day!
We cannot end this update without sharing our immense gratitude for all the support and encouragement that many of you have shown to our family. Our church family brought our kids Christmas gifts, food, and such sweet support during my hospital stay. Another sweet friend set up a meal train for our family that has been such a huge help during recovery. We were shocked and so humbled by another friend setting up the Go Fund Me to help our family with medical expenses. We cannot explain the help that it brings to our family. THANK YOU. We feel like words are not enough...but please know, sincerely, we are so blessed by each of you and praise God for each of you! For those that have been asking about our Go Fund Me...it is linked here on our blog page.
Lastly, we want to say a huge thank you for praying for our family. This is one of the greatest gifts...
We continually take each day as it comes (our motto - one day at a time, his grace is sufficient), so thankful for God's grace, mercy, and faithfulness to face what is ahead. Goodness, do we need Him! He has held us and guided us up many mountains that have felt too big to climb. We praise him for the highs that take our breath away and the lows where we feel we have no more breath to breathe. When you go through really difficult circumstances, it can feel so heavy and hard. But, because of God, we know there is always hope and we are not alone. It grows our gratitude, it continues to give us a real perspective of what matters each day, and it pulls us into a deeper trust in Jesus. We have been in circumstances that feel so heavy and scary, yet we feel unshakable peace that we know comes from the Lord.
Sometimes the road feels so bumpy...more like a roller coaster gone wild...ha!
We feel stressed, anxious, exhausted, you name it...we are human! But...we know where to keep our focus and where our help comes from. We are processing so much from these last two years...we have a lot to work through emotionally, mentally, and physically. One day at a time - His grace is sufficient. and He is ever faithful. We are never alone - He is our refuge and strength! We step into 2020 with many things that concern us but hearts full of joy. Annnnd...we do not let a day go by without a dance party to "Never Give Up" by For King and Country...have you heard it? Listen...and dance...we promise it will make your day!
Lastly, we want to say a huge thank you for praying for our family. This is one of the greatest gifts...
No comments:
Post a Comment