grace led in life

It has been such a whirlwind time...

We had an emergency dental situation happen on Sunday night... we had just finished packing everything, house was clean, ready to eat dinner and head to bed... It was me, Molly, that had the situation by the way, and let me tell you, I bawled my eyes out HARD. It broke me. News flash to those that don't know - I have had to wear a denture for 13 years (my health issues have contributed to severe bone loss in my jaw, so I can't have some teeth there) ...

So, to bring full context to this story, my full four front teeth denture broke.
I shouldn't have been able to find help on a Sunday night, but thanks to a couple of INCREDIBLE friends, we were able get the help we needed that exact night. It's funny, there have been plenty of hardships these last few weeks, but that ridiculous teeth debacle (that does not affect eternity, mind you, I know) was the straw that broke this camel's back - I bawled my eyes out because it was so much more than teeth.

We are holding so much right now. health has been a huge struggle. We take everything a day at a time and truly do trust the Lord, but living this out is heavy and immensely hard. There are details of this trip that matter so deeply to us - information needed for our girl and her future. So, my big tears were more than just over teeth issues, but I was so mad at my teeth and so sad... we had a flight to be on by 9am the next day.
Again... by the grace of God and two sweet friends helping us find the help needed and taking care of our kiddos, I was able to get my "frown turned upside down" I guess you could say. ha!
We are not QUITE laughing hard about it yet... but maybe we will someday? (You have full permission to laugh for us if you'd like)

The last couple of months, and all the health issues our family has been hit with, really made this trip feel even more intense. Not knowing how we would be able to do all of this felt scary, but we firmly kept trusting the Lord to get us here day by day.
I don't know why I am telling you all this, perhaps it is the huge lack of sleep from travel and prednisone, but what I can say is God continues to be SO faithful and is getting us through...

Ok, so Monday came... We made our way to Philadelphia yesterday. The travel days are so long. Today (Tuesday) was pre-op day - a drive away outside of Philadelphia with Dr. Borek - ENT Aerodigestive specialist. We loved getting to meet him and talk with him. Not many questions can be answered until he is able to see all of Isla's airway and lungs (if possible) tomorrow. Isla was quite nervous at her appointment, but she did so well.

We have a check in of 9am for our girl tomorrow morning for her exploratory airway surgery.
Dr. Borek seemed very optimistic, which was so good, yet there is much to be learned tomorrow.
He doesn't "know" her yet - will be so good for him to fully get to explore her airway and for us to gain more knowledge about all the details so we can make wise decisions moving forward.

Our sweet girl has a lot of nerves for tomorrow and this whole next week and a half. We have a lot of nerves, yet we feel a lot of peace at the same time too. Thank you all for praying for Isla... for our family.

I will update as I can. It all depends on Isla, our family, health issues, etc...

If all goes well for Isla through this surgery tomorrow, we will get to take her to our hotel outside the city and spend a few days there... we will have another pre-op consult with Dr. Anari (her orthopedic surgeon) but otherwise we hope and pray we can spend some time resting and only doing FUN things! The kiddos really need it...we all need it!

Here are the video journals of our travel day and pre-op day:

CLICK HERE - TRAVEL DAY TO PHILADELPHIA

CLICK HERE - Airway Pre-op Day

While there are heavy concerns on our hearts and minds for tomorrow, we experienced so many sweet joyful moments today...

Time together - such a gift, smiles, deep belly laughs (not about teeth though- too soon..ha!) yummy treats, dance parties!!!! snuggles, prayers together...

Time to go sleep.

Thank you for all the love and prayers.

Springtime is here - we've had some really sweet days getting out in that bright sunshine. The trees are full of leaves, the flowers are blooming, and the warmth of that sunshine feels sooo good!
I will fully admit though, I love some rainy days and crisp weather, too - but there surely is something special about the new life of springtime. Love the visual of all the life that comes after a winter season. We've had some really hard days - love the joy and beauty God gives in his creation...it is such a gift! We were able to continue our tradition and make it to the tulip fields again this year... such beauty! So thankful!

Thank you so much for praying for Isla. A couple of weeks ago, we had a scare with her health.
Isla experiences a lot of pain in many ways and due to many of the conditions she has. She had particular pain in her abdomen that got increasingly worse. In not giving all details, I will just say that we were told they found a mass in her abdomen (seen on ultrasound and CT) and after a night in the hospital, she had an MRI with the intention of figuring out what kind of mass it was. When the radiologists and doctors read the MRI, they saw no mass! We were all in shock (as there had even been discussion from the team of doctors about Isla possibly needing surgery by end of day to remove this mass) We don't know if it was just inaccuracy in reading the radiology scans, an organ presenting differently than it should, or a miracle, but we will wholeheartedly say we are SO GRATEFUL and praising the Lord that there was not a mass seen on the MRI. Isla still is experiencing some tough symptoms and pain. We continue to have appointments with her specialists and ask that you keep praying for our girl. With the medical needs that she has, some of them are known and some still unknown. We will never stop pursuing finding answers for our girl. She has been through so much in her life... it honestly often feels like there is so much working against her. She is so worn down from it and so anxious from it all. We try so much to help give her body and mind a break from all the medical things, but it is so tough when it is needed every day.
Isla is experiencing a lot of emotions and being a person with intellectual disabilities, she cannot understand what is happening and why... can you imagine how that feels? So heavy and hard. Our hearts feel so deeply for our girl, and we will never stop fighting with HOPE for her. We keep trusting the Lord - he knows her needs even greater than we do. Continuing to place our hope in him.

In less than 6 weeks, we will be in Philadelphia again for Isla to have 2 surgeries.
Isla was scheduled to have airway exploratory surgery at Children's Hospital of Philadelphia in early April, but it had to be rescheduled.
Isla will now be having exploratory airway surgery on June 11. If the airway surgery goes well and she is cleared to move forward with her next VEPTR expansion surgery, that will be on June 16th. This will be a really big time for our warrior girl.
Although it may seem far away, it really is right around the corner, and we have been in prep mode for the trip and all it entails. It never gets easier. We are so grateful for these amazing medical teams and getting the best help for our girl, but the experience is so overwhelming for Isla. It triggers PTSD, is so draining for her mentally, emotionally and physically. It is very heartbreaking in many ways.
We surely feel nervous for all that is ahead. We've been waiting a long time for more detailed answers about the status of Isla's airway. Her airway has gotten increasingly worse. We may have some difficult decisions ahead. We are praying for miracles.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

It is really hard to know what to share sometimes - there is SO much that is happening that is unshared.
It can feel scary to say all the things - I often show the "good" things, but part of that is fighting for joy through some really difficult and heavy things. Not ignoring the hard but looking for the good.
My friend, Kasie, (whom I admire so much) wrote "When you are going through something difficult, it is imperative that you focus on what is good and true, or the fear and the struggle might just take you out." I appreciated her words so much because that is exactly how it feels. We are daily faced with big and hard decisions. The amount of heartbreakingly hard things is SO much. It can feel so consuming. We recognize how much we need to intentionally see the joy and good. It is there! God provides so much truth, encouragement, and beauty even in the hard. There is joy...we don't want to miss it.

Please pray for Isla's body, heart, and mind. That she can feel miraculous peace through every hard step she has to take. Please pray for safety over her body and health.
Please pray as we approach looking at her airway more closely and all the decisions that are ahead.
We have some other health issues happening within our family (Zeke and Molly) and would love prayer as we continue to navigate it all. We'll share more when the time feels right.
We cannot thank you enough for sincerely praying for us all. We also are SO grateful to those that reach out to give encouragement. We cannot say how life-giving that is. YOU ARE A BLESSING!

Many of you have so kindly asked how to help. Honestly, it has been very difficult to know what would be helpful. Might not make sense to most, but we often have to tread lightly on decisions made each day. We're trying hard to figure out what we need and how to ask for help (admittedly, working on this)

With all the medical expenses, along with the high cost of traveling for surgeries, we have our Bonfire store open and have added hats to the mix of shirts! I'm asked so often if people can order shirts. The answer is YES! At any time, shirts and now hats, can be ordered. A portion of all sales will go toward all the medical needs/travel for medical care.
Please feel no pressure to purchase anything, but we would so appreciate you sharing about this if you are willing! This can be such a huge help!

HATS AND SHIRTS STOREFRONT (click here!)

As the weeks progress, I hope to update a little more if I'm able... but once again, thank you for praying for us and loving on us! God is ever faithful no matter the circumstances.