These past weeks have been filled with prepping for our trip to bring Isla to Children's Hospital of Philadelphia for her first VEPTR surgery.
We have also made it a priority to "be still - stop and smell the roses" too.
It is a very emotional journey - So much thankful anticipation mixed with grieving all that will change for our sweet girl. This is a fight for life. There has been so many phone calls, messages, researching...our minds have been very full. At the same time, our hearts have felt such peace and we continue to see amazing miracles taking place. It is such a gift to see God's faithfulness so clearly and walk forward in the way he is leading.
So very thankful for our brave and courageous kiddos!
Monday was a full day of packing but also such a sunny day...so we took a break from packing to get outside and soak up some rays! Sunny days in Seattle have brought a feeling of fresh SPRING! Loving it! 
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| always bug hunting :) |
We arrived in Philadelphia yesterday evening after a long travel day.
It was a beautiful sunny day in Seattle for take off...
The flight always feels long, yet it went really well...Isla got a great nap in right away and was content to watch a show once awake, Zeke was busy drawing, watching shows, playing games, and chatting non-stop :)
We arrived in Philly late afternoon and took a train to a stop near our hotel and the shuttle picked us up from there! It is a huge blessing to have the shuttle taking us to CHOP each day for Isla's appts! |
| Zeke was excited to ride the train, which of course led to "take a picture of me like a ninja!" :D We cannot say enough how much this boy brings his sister so much joy. He is the first to bring smiles to her face and giggles of joy. He is being so brave on this journey too. The Lord has given him such a thoughtful caring heart. Love him so much. |
We honestly had a smooth travel day...but admittedly at this point, we were very ready for the hotel shuttle to arrive and to get settled in. ;)
The best high-light of the day was arriving to the hotel and getting to meet Tenleigh and her family!
Isla and Tenleigh have a special connection - they both have Jarcho Levin Syndrome.
This is a rare syndrome - 1 in 2,000,000 have Jarcho Levin Syndrome.
To have been in Philadelphia for CHOP at the same time was such a gift.
We treasure getting to meet Tenleigh and her family and are so thankful to have new life-long friends! Tenleigh was ALL sweetness with Isla and Isla immediately reached for her. Such a special gift!
The best high-light of the day was arriving to the hotel and getting to meet Tenleigh and her family!
Isla and Tenleigh have a special connection - they both have Jarcho Levin Syndrome.
This is a rare syndrome - 1 in 2,000,000 have Jarcho Levin Syndrome.
To have been in Philadelphia for CHOP at the same time was such a gift.
We treasure getting to meet Tenleigh and her family and are so thankful to have new life-long friends! Tenleigh was ALL sweetness with Isla and Isla immediately reached for her. Such a special gift!
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| Love these brave, strong girls and so thankful we could meet! |
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| Isla loved Tenleigh's hair - ha! |
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| So much thankfulness! #passthekleenex |
and she was hungry and tired...but as soon as we left for CHOP at 11:30am - she was a trooper and powered through!
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| Sweet girl was so loopy from hunger, teething, and being tired. |
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| trying to be happy look :) |
We met with Dr. Mayer (Isla's pulmonary doctor). He is so kind and went over the test and what they were testing. This test was to develop a "baseline" of the function of her lungs prior to VEPTRs being placed. They were testing for lung capacity, compliance (flexibility of her chest wall), and if there was any obstruction in her airway.
So proud of Isla - with being hungry and tired, the sedation meds set in quickly and well and she was a champ through the testing!
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Isla having the PFT test - it was not an intrusive test, but really gave a clear look at her lung function on a few levels. She is such a trooper!
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She had a tough time coming off of the sedation med - it took her a while to wake up (even with us placing cold wet rags on her, poking her, talking to her, etc. She wanted to sleep!
As soon as she woke, she wanted to be independent and moving around - wanted freedom, but she was extremely unsteady...so it felt a bit like the phrase "herding little goat kids" in trying to keep her safe coming out of the med. They said it can take about 24 hours to leave her system...so we were on high alert until bedtime. She ate about 5 meals (no joke!) and fell asleep at bedtime within a minute :)
The results concluded that she has "low to moderate lung deficiency". Isla's lungs are functioning at about 50% compared with an ideal level. Our hope and goal is that we will be able to maintain that 50% through VEPTR surgeries as her body continues to grow. We hope for better, but realistically the hope for Isla with her condition, is to maintain as she grows.
Tonight we get to rest up fully - no appointments now until Monday.
We are all tired out and needing to process and settle in some more in prep for next week.
We have a lot on our minds. These surgeries are not simple and will be hard on Isla. We feel so much emotion - Justin and I were discussing how grateful we are at HOPE for life for our sweet girl.
Look where God has led us...we hold on to that HOPE.
Isla will have all her pre-op appointments on Monday and surgery is scheduled for next Wednesday, May 2nd.
Thank you all for the prayers and encouraging messages! They are so sweet!
Watch for updates on the blog or facebook page:
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