We again want to say a big "THANK YOU!" to all who have been supportive, encouraging, and helping to meet our needs! We apologize if we cannot answer messages very quickly, but we are so blessed by you reaching out! We are so grateful to our church family for all the meals and support! It is so life-giving! We thank God for you!
Recovery for Isla has been fairly usual with ups and downs, but overall...her healing has been amazing! God is so very good...we do not say that lightly! To Him be the glory!
Isla has not faced any infection through her recovery!
This is a huge praise, you guys!!! It can so easily happen with these surgeries, and with being so far away from CHOP, definitely was a concern for us, for Isla. From week to week, her incision continued to heal beautifully...with NO concerns. We kept in contact with Isla's team back at CHOP on a weekly (more if needed) basis. They were very kind and gave good reports from photos and info we would send to them.
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| warrior girl - healing from first VEPTR placement surgery |
Coming home from Philadelphia never felt so good...for all of us, but it was so needed for Isla and her recovery. She had so much relief in coming home ♡ I think, not only was it good for her body, but very necessary for her heart and mind.
Isla faced a lot of pain, muscles spasms, difficulty to be comfortable to sleep. She was very unbalanced due to having a new center of gravity after surgery. Isla was so determined each day, so she tried to do so many things. It was incredible to watch her joy and determination through it all...even on the really hard days when we could see she was discouraged, she did not stay there, but found her joy.
Isla and I (Mommy) had a huge lack of sleep for the first 4-6 weeks that we are still trying to catch up from. We'll sleep later ;) J/K is it nap time yet?? hehe!
Zeke has been a huge source of love and joy for Isla...
These two - it is undeniable how God orchestrated them as brother and sister. They need each other, bring each other so much laughter, they help each other be so brave. They both have been through hard things in life and they bring each other so much calm. Justin and I are so blessed (beyond) to be their parents...God knew we needed them, but on top of that...He planned and knew what needs these two would face and how together, they are stronger. Love our team 💗
Zeke is so special to us...we love how he is growing and learning so much! He is filled with FUN! He loves to make us laugh, he is BEYOND thoughtful of each of us! He LOVES being together as a family, he is so smart...learning so much everyday! He is the king of asking questions...loving to learn details and hear all about everything! Isla's face beams so brightly when her brother enters the room. He is patient and oh, so kind!
Zeke - We are so blessed by who you are! We love you+!
Once Isla was healed enough and cleared by doctors, she began PT and OT at Seattle Children's Hospital. They have been so wonderful with her!
Every week, they are shocked by her determination and abilities! They usually have to make the therapy time TOUGHER for her! She keeps them on their toes! ha! #islastrong
Soon after arriving home, Isla began eating more solid foods and put food in her mouth for the first time ever, herself! Good ol' Cherrios ;)
Isla has had a fear of touching her food...so touching dry cherrios was a big step for her, but a couple of weeks ago she played with and ate yogurt by herself! She was a bit nervous when I presented it to her again, but once she decided it was ok to feel her food, she smiled so big and smeared that yogurt EVERYWHERE! :) Zeke was so sweet and cheering her on! Go, sister, Go!
Now she wants to touch all of our food ALL of the time...LOVE it! She is eating like crazy, which is so good! We need to keep as much weight as possible on her for the journey she is on.
She kept moving even on the toughest days, and even in the hospital she wanted to pull herself to standing and walking with assistance! Not long ago, She began standing without holding on to anything! This has currently led to her be more brave to stand for long periods of time, leaning over to pick up something off the ground, and standing back up without help! She has taken a couple of steps without help, but cruises while walking with something to hold on to!
This video below, was the first time she stood for a LONG time and was playing with flowers :)
It has been a blessing for Isla to recover over the summer season- the doctor had said that she should be fully recovered from the surgery around 3-4 months from surgery. Aug. 2nd was the 3 month point of recovery.
She is doing absolutely incredible. She astounds us with her determined and joyful spirit and her vibrant fight to live life to the fullest! Even on her hardest days, she had countless smiles, giggles, and perseveres to try anything she puts her mind to! She has been so brave. Her sweet heart trusts us to let us know how she feels. From tears to joy, we love that she shares that with us.
These months have brought our family into a deeper bond. It is amazing to think that Isla has only been with us for 8 months. We feel like we have known her so much longer. She is a part of us. She is such a gift!
Justin and I have slowly been processing so many things from this past year, such high joys and real hardships as well...it has been a time of feeling so exhausted and emotionally drained, yet so filled with joy and peace - which we know only comes from the Lord!
Isla is such a light in our lives...We praise God that he brought her to our family...we are the luckiest!
We are in constant awe of the miracles God has done in Isla's life. What love God has for us that we get to experience the joy of parenthood to these two precious kiddos and see life through different lenses because of them. God continues to lead us, encourage us, grow us, and love on us in so many ways.
Isla is still in a fight -
She will have her next VEPTR placement (left side ribs, her prior surgery was her right side ribs) surgery on Sept. 11, 2018. We are both excited for this to happen, and have a pit in our stomach for what is soon approaching.
knowing all this precious girl has been through is heartbreaking...We pray for God to keep her strong in the fight! We pray for L I F E!
After this next VEPTR placement, she will have 2-3 surgeries that will expand her current VEPTR rods. Those surgeries will be every 4-6 months, and then at that point, she will have to have her VEPTR rods replaced again (to bigger rods), and continue doing the expansion surgeries every 4-6 months. This is not a "one and done" situation for our warrior girl...this is her life. We pray this allows her to breathe. The goal with all these steps is to always give her lungs room to grow. Her lungs are at 50% in size right now and we pray we can maintain that and that the lungs will grow as she grows.
It is hard to share how serious this is, but we want to be honest about where she is at. Without these surgeries to try to maintain lung growth and for her breathing to support her body, she would lose her life, most likely within a year. These surgeries and the creativity from Isla's surgeon are so crucial in saving her life. We praise God for the miracles He has done in carrying our sweet girl. We continue to pray for miracles!
**As I was in the middle of writing this blog post, we received the news that Isla's surgeon, Dr. Robert Campbell had passed away. We pray for his family, the VEPTR community, and his colleagues at CHOP - you can read more about this in our last post. We praise God for leading us to an amazing doctor and we pray for God's continued leading in Isla's journey ahead.
- SUMMER LOVIN' -
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| Z completed preschool! We were so excited to celebrate last day of school! (left photo was 1st day of school in Sept. right photo last day of school in May!) |
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| So fun! Zeke has such a love for police or any job that involves helping people and rescuing! He drew and police car and wrote a report about police :) |
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| Isla loved getting outside during this recovery...smiley girl |
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| Summer time = ice cream time! |
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| Sister and brother love |
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| celebrating Z's last day of preschool! We went for donuts and then to play at the park! |
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| snuggle love - This girl loves to snuggle us, especially if it involves her fav blankie! She says "awwwww" |
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| Daddy love! |
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| These two...glued together! |
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| Hot summer days...ice cream treat! |
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| We loved celebrating Zeke turning the big 5! |
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| LOVE YOU, Z BEAR! |
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God truly has filled us with so much joy and peace - thank you for being a part of that!
Prayer requests:
- Continued healing for Isla from last surgery and for her body to continue strengthening for this next surgery.
- For Zeke and Isla to feel at peace when travel and surgery for Isla occurs again on Sept. 11, 2018.
- Justin and I as we figure out schedules, work, finances, traveling details, surgical needs, family needs, etc.
- for Isla's doctors and medical team at CHOP - We are still working through details, but please pray for Isla's surgeon - for wisdom and clarity for her unique surgical needs.
- Peace-filled days of getting quality family time together
- For us to all stay healthy, but especially Isla! (even a cold could be life threatening)
We will be in touch - much ahead 💗
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