Friends and Family,
(Read highlighted area for the short version : )
Hello and sending hugs… it has been awhile. We miss being in contact more with you all but,“Wow!” we are coming out of a very hard season and so look forward to catching up! I’d like to attempt to catch you up a bit so here we go…
As many of you know we spent about a month in the hospital starting the very end of January. What started out as what we thought to be a normal day turned very quickly into Janely being rushed into emergency surgery! We almost lost our baby girl. The crying out to GOD,praying, diving into His Word for every ounce of strength, comfort and encouragement was daily…moment by moment! I believe we both felt pushed passed our capacity. After 5 days completely sedated and paralyzed by meds while medicine and machines kept Janely alive, she started to wake up and be weaned off for a total of 8 days in ICU. Then seven more to follow in a regular room for her to continue to heal and learn to eat again. We had a small handful of days at home until secondary effects and complications caused her to worsen and we were then back in the hospital again for over 2 weeks.
Due to Janely’s Hydrocephalus she has a valve in her head that takes liquid out of her brain and then drains it to her tummy. A block had developed from tissue in her tummy that caused a rapid block, brain pressure to rise to a dangerous level and her heart, lungs, and block pressure to lower to a life threatening level. Because her condition
was so bad surgery was not good and though the block was found quickly and fixed in her tummy her body worsened during surgery and her body went into shock causing infection (likely pneumonia) in her lungs to spread and Janely to aspirate (when liquid, blood or food goes into your lungs instead of down your esophagus). As Janely began to recover we found out she had developed really bad acid reflux and continues to aspirate which is where her second surgery came in called a gastrostomy.
Now Janely receives food through a tube in her tummy until she can gain enough strength and learning to maybe eat again by mouth without aspirating and allow her acid reflux to heal. Due to Janely’s limited ability to move she is more susceptible to any type of infection and problems like acid reflux because her body doesn’t’ move, process, heat, digest, etc…the same as another child her age.
We’ve been home for over a month now and still feel we are trying to find our new normal and how that includes sufficient rest, etc… We’ve been learning how to use her tummy tube for feedings and use the pump (like what the nurses used in the hospital). It is not possible for us now to give Janely more than one session of feeding therapy and one session of physical therapy a week – so I (Shawna) ask a lot of questions and get trained as best as I can so that Juan Manuel and I can do it all at home the other 6 days of the week. Overall we stay pretty busy managing Janely’s care, feedings, therapies, medicines, etc…We are so grateful we have our baby girl back but many days are still overwhelming or just require more adjustment time for us all.
As Janely is healing, growing stronger and having continual adjustments made to her medicines to find a new balance we see her doing really well. Her epileptic seizures now seem to be under control with only two medicines and she is more alert and eyes open than before! We are just so thrilled to be home and be enjoying our baby girl again free of pain!
GOD greatly used the time in the hospital we believe to really teach us a lot! My how suffering is a great teacher! We both see how much we need to be humbled…to live lives and have hearts less selfish, more focused on loving others as Jesus has loved us, and to die to our pride and comfort driven desires. Many days were rough where we didn’t know physically how we could keep going but GOD was faithful and so were many of you in praying that His supernatural strength brought us through! We found comfort, encouragement and conviction in the Word of GOD daily and teachings on suffering from John Piper and RC Sproul Jr. in “The Suffering & Sovereignty of GOD” so if your going through a season of suffering, gosh, we say “check ‘em out”!
Despite us GOD opened so many, many doors to share about Jesus with nurses, a few doctors and many families that we got to know sleeping nights in the waiting rooms. GOD continues to keep us connected to many families and nurses and we believe has clearly opened the door for us to start a support group for families with children that have medical and special needs. We hope this group can be a safe place to walk this journey together, support each other by sharing of resources/referrals etc…and above all to lean on Jesus and share His truth with many families that don’t’ know Him!
BIG NEWS! We will be staying in Ecuador for about another year as we did not get the green flag from the US to move yet with Janely. We really both feel peace about this and hope and pray GOD can use us here in Quito to keep trying to spread His truth. After almost a year of no couch, we decided to finally make that purchase and GOD sent us a great used deal on a couch that suits our needs! Staying in Ecuador will allow us to complete the adoption here so we have already began collecting all the necessary documentation until we are allowed to submit our packet on our 3 year marriage anniversary in August, yay!!!
Now that we are finding our new normal and schedule that goes with it I am able to start back up with counseling and am looking forward to opening the door to starting a therapy group again…if GOD wills. Janely keeps me very busy and I am constantly trying to learn more about anything I can to help her whether it is new therapy techniques for her feeding and neck strength or medicines to help her Epilepsy with less side effects. If any of you have experience with some of Janely’s diagnosis or disabilities we sure would love to hear from you and/or any tips you might have? : )
If you are interested in praying for us and coming beside us for what specific needs we have we’d like to share that with you as well:
- Financial support to help specifically with Janely’s …
- Substantial Medical bills
- Daily/monthly medical costs and appointments
- Anti-Convulsant medicines
- Feeding and Physcial therapy
- Adoption process
- Seating, Car seat, bed, etc… for Janely, as she out grows what we currently have and now requires specialized equipment/furniture for her size and disability
- Donating Airline Miles – Juan Ma’ must travel to the US every 6 months to keep his US residency until we are able to move together as a family. Shawna will also likely need to travel to the US for documentation specific to Janely’s adoption that requires her to be there in person and to take her licensing exam for counseling or to become an LCSW.
- Prayers for strength in Janely’s care, learning when and how to rest when all of it seems overwhelming or our bodies are saying “enough”, continued growth, trust and obedience to Jesus and to be a tool in His hands here in Quito in every day life.
Thank you all for the many encouraging messages and prayers that have meant so much to us in these past months! We do not lose hope though our physical bodies our
wasting away we are being renewed day by day (2 Cor. 4: 16-18). And we pray that for you, wherever you may be in life right now…do not lose hope! We have an amazing eternal reward waiting for us …to share together in Jesus our Lord!
In LOVE and Gratitude,
Juan Manuel, Shawna and Janely