Today was another busy day for Islia, my mom, and I. We were up and at’em at 7am to start our drive to CHOP main for Islia’s second post op lung perfusion scan (sort of like an MRI but shows the blood flow of each lung). Every time we answered her question on having to get an iv she would cry and shout “NO! I’m not getting needles”. So our near two hour drive, because of traffic, into Philly was not super pleasant. We get to CHOP and Islia has calmed down by now. We are all checked in and waiting for our appointment. We get called back. The moment we step into the room for to get the IV Islia starts losing it. Mom was able to calm her down and child life brought toys for Islia to play with, but once it came time to do the IV she was wanting to run away as fast as possible. They had to wrap her up in a blanket to keep her from thrashing. I laid on top of her to immobilize her upper body. Once the IV was in she sat up real quick and said “I’m ok?” We all replied with “yes you’re ok”. Then came the actual perfusion. The tech came to get us for the room we were in. Islia started to cry when we laid her down on the MRI table. The tech strapped her down but she cried for the whole scan (about 30-40 minutes). She’d start to calm down and almost go to sleep, but then ramp back up again. Finally the scan was done, the IV came out, and we went down to the cafeteria lunch. We had a good lunch and Islia was in a much better mood.

 After lunch we went to see her normal cardiologist, but she had to have an ekg and echo first. The ekg nurse wanted her to lay down on the table. Islia asked if she could not lay down, but the nurse said she had to. Well Islia immediately started to burst into tears as soon as we started laying her down so the nurse said she can sit as long as she remains calm. Which she was until we forced her to lay down. The echo was the best part of the whole day because she was calm, still, quiet, and didn’t argue. She was laying on top of me for the whole 40 minutes. Finally we got to see Dr. Tingo and she is so pleased with how Islia is doing. Islia now weighs almost 32lbs. (She weighed 25 in March right before her surgery). Her lungs pretty much match the scans we had post op and the blood flow is looking good in the heart. Dr. Tingo is sending a request into Dr. Hanley (Islia’s surgeon in California) to have us do the 1 year heart catheterization here at CHOP in February. This will be our next appointment for doctors with Islia. 

After the appointments were done we are now getting in the car to go home and Islia says “I’m really tired”. Mom and I thought she’d sleep during the car ride, but she was awake the whole time. As we are driving home we pass my old dance studio and I see that Miss Jane (my teacher and the owner) is there so I ask my mom if she minds. She doesn’t so I ask Islia if she wants to go to the park and play with pops or go see my old dance studio. She lights up and says “dance studio!” So we pull up to the studio and surprise Miss. Jane. Islia had so much fun dancing around the studios and Miss. Jane got to dress Islia up like a little ballerina. It was a perfect last stop before going back to my parents house. We joined Pops and the boys, packed up, and headed out to dinner with Memom and pops then headed home exhausted and with full tummy’s. Today was a full day that started with tears and ended with a ballerina being born! 

Sorry for being so bad at updating everyone on Islia’s recovery. Here is two major updates from the past two months. ISLIA IS OFFICIALLY ON ONLY AN INHALER!!!!!! We just had her pulmonology appointment on Wednesday (August 14,2024) and they are so pleased with her recovery that they were considering taking her off of all inhalers. They ultimately decided to keep her on her one inhaler (Flovent/fluticasone) just to make sure her lungs dont get compromised during her first winter post-op. Their goal is to get her off of it completely by 1 year post-op. 

Now flashback to June 27, 2024

  What a busy day we had today. We loaded into the car and took off for CHOP around 6:45 in the morning. 

  Her first appointment was at 8:15 for her echocardiogram, then we were scheduled for her lung perfusion scan at 10:00. We saw her CHOP cardiologist at 1:00, then finally at 2:00 she was scheduled to see the ENT doctor. 

  The echocardiogram went very smoothly. Islia was a little scared but calmed down quickly and laid down calmly. 

  The trauma began with the lung perfusion. She was fine until we began to secure her so the doctors could set up her iv. They failed in one hand and had to move to the other hand. She screamed so much she was sweating. She didn’t want to get on the bed and kept telling the doctor to stop. With plenty of soothing, she finally fell asleep and slept through the scan. As soon as the doctor began to remove the iv, she woke and began crying again. 😢

  We ate lunch while waiting to get an ekg and see the Cardiologist. While we waited, Islia put Mickey Mouse stickers all over her pants, then me-moms arms. Initially she cried when the nurse asked her to take off her shirt, but calmed down when she understood that she was just going to put the stickers and wires on her chest. Islia was excited to see her Cardiologist who told us her heart and lungs are working extremely well. 

  We had a 2:00 appointment with the ent for follow up on her paralyzed vocal cord, a side effect from surgery, but because rout 76 was terribly backed up people were arriving late for their appointments, which delayed us by 1.5 hours. Islia enjoyed playing around in the room, but began to cry the moment the doctor wanted to record her singing or talking. Once again we had to restrain Islia in order to give her the endoscopy so the specialists could check her vocal cords and her swallowing ability. With that complete, she was given some chips and juice to help her calm down. The ent was very pleased and said Islia’s vocal cords are completely healed.

We just had our 2 month post-op appointment today. She has gained 4lbs. since her surgery, which has been the quickest she’s gained weight in her life! They love how her echo and EKG’s have been too. Her scar is healing nicely and they are all pleased with how it’s looking. The biggest news from today’s visit is that Islia is no longer needing her lasix!! She has been on this medication since she was 3/4 months old and today the doctor says she’s good to go without it! This medication is a diuretic that helps reduce the amount of excess fluid in the body by increasing the amount of urine produced. With this news Islia is headed in the right direction! Our next major appointment isn’t until the end of June. Thank you for all of your continued prayers. Until June!

We got back around 8:30 last night. It was an interested homecoming as we found out we had electrical issues upon walking through the door. We had lights, but no heat, no water, no stove, etc. Thankfully we had someone already clear out our fridge and freezer for it to be repaired. All of those items were down in the deep freezer which were still frozen. We have no idea how long we were having this issue for, but the slip from our electrical company said 3/20. Anywho we called around to find an electrician to come fix it. By this point it was 9:30. We had the electrician out to house by 10:30 and we had power restored fully by 11pm. In the interim we had used our wood burning stove in the kitchen and huddled around it. Long story short we are home safely and had a good nights sleep last night in our own beds, and that felt amazing!! Thank you all for your prayers during this crazy and stressful time in our life. We appreciate every single one of you more than words could say. We love you all!

~ Ashton, Victoria, & Islia

Sorry for the delay in updates. We left Stanford Saturday (3/23) afternoon in a minivan that we’re renting. To avoid severe winter storms up north, we drove down to LA area where we spent the night at our friends house down there. From there we started our trip across the country. By dinner time we had made it to Grand Canyon. We only had 10 minutes of sunlight to see the canyon. It was freezing and snowing too. Thankfully we packed Islia’s winter coat and hat, but that wasn’t enough to keep her warm. Back into the car we went after a stop for dinner in Grand Canyon junction. Between Ashton and I we drove a little past Albuquerque NM, where we did NOT make the wrong turn (hahahahaha). Day three of driving wasn’t very fun as we were being hit with the bottom of snow storm that we were trying to avoid via the north route. However we would take that over what I80 was getting. Driving through New Mexico took a while. We got to Kansas around dinner time and found a very quaint, but delicious, Italian restaurant. From there we drove another 4 hours past Wichita and found a rest stop to get some sleep. Today we had stopped off at Panera bread and met a lovely woman there. We shared our story with her and she, being a believer, asked if she could pray with me. After lunch we got back on the road and we just crossed into Missouri via Kansas City. Our goal today is to get to Columbus OH. 

Pictured is Islia next to the Dorthy sculpture in the Kansas town we stoped off at for dinner last night. 

Islia was released from the hospital today at 4:30pm our time. She had a heart catheterization at 11am to check her right ventricle and pulmonary artery pressure differences. Her echo two nights ago showed an elevated number when compared to her surgery. They didn’t want us to go back to CHOP without confirming the difference and found the echo to be inaccurate, which means all is well!  Better safe than sorry, so we appreciate their due diligence.  Since she had to lay flat for four hours post cath 4:30 was the first time we could leave. We are now back at the Ronald McDonald House eating chick fil a looking forward to a good nights sleep! Thank you so much everyone for all the prayers we have appreciated all of them!

All things in and on Islia have been removed!  No more IVs, catheters, stickers in all their variety, and she’s feeling all the better for it.  Unfortunately, we were preparing for a much earlier discharge than originally communicated, and then were turned around with a needed hearth catheterization.

We received the update from the team that her pulmonary artery valve has is experiencing more pressure than they still would like to see, so they are going to do a heart catheterization tomorrow afternoon to assess it and confirm what they think is going on.  They will likely need to balloon the valve, which is a two second “operation” to correct pressures.  We’ll see how things go, and we’ll update from there.  We’re all hanging in just fine, and if all goes well, we should be here only a few more days while still on the same recovery path.

Islia is officially out of the ICU!! We got transferred to a normal room late this morning. She also got cleared to eat solids. Her vocal cords are slightly damaged but nothing that cant heal on its own. The left cord doesn't close fully and there’s a tiny hole so shes only allowed to drink thickened liquids; which shes doing really well at. We are already set to see an ENT at CHOP when we get home. She’s sitting up and has gotten food in her. Last night was rough too as she was so hungry and now that shes gotten food we hope she gets a good nights sleep tonight. Grandma Nessa (Ashton’s mom) left to fly back home just before we headed up to our new room. She’s now on her way to Shem (Ashton’s brother) who was in a car accident this morning. He’s ok, but prayers for him, his wife, and my nieces and nephews would be awesome! You guys are great prayer warriors and they need some prayers too right now. Each day is new things happening here. We’ll keep you updated the best we can. 

~Victoria, Ashton, & Islia

So much has happened since our last update yet at the same time it feels like very little has happened. On Friday night Islia was extubated!! However she hasn’t slept longer than an hour since. Today was a big huge day!! She is officially breathing on her own with no extra oxygen!! She also got her feeding tube removed which has been the source of a lot of her discomfort since extubation. We’re still not fully cleared to give food yet but we’re hoping she passes tomorrow. If she doesn’t the feeding tube will have to go back in. She’s been very constipated and they gave her miralax today which cleaned her out nicely. We also got out of bed today and sati in the chair for 3 hours. We played with model magic clay and watched Matilda. Now she’s all settled down and finally sleeping!! I (Victoria) am currently in bed with her which we got cleared to do today as well. All good things right now. We may be transferred out of the cardiovascular icu soon if she passes the swallow test and starts talking more. Thank you everyone for your prayers. They are being answered every second on this end. We truly are blessed. 

Love,

Ashton, Victoria, Vanessa, & Islia

P.S. the photo attached is from earlier today during her swallow test with jello. This was before she was taken off supplemental oxygen. 

This is a short but nice update. It’s been a rough two nights, but Islia is doing very well, especially so soon after surgery. She’s had two heart catheters and two chest tubes removed today, with the chest tubes being the bigger deal. They have been extremely uncomfortable (which is universal for any patient), and have been a source of a lot of her misery in the recovery process, so the relief their removal provides is incredibly welcome, with her appearing MUCH more comfortable and relaxed.  

She’s still on her breathing (ET) tube, but they expect that to come out tomorrow morning, which will be the next large leap in her recovery and comfort. It is also believed to be the largest discomfort in this whole process, so we’re absolutely excited for that next step.

Keep those prayers coming, as we see it all in effect here!

Hoping on here to give you a quick update on Islia. She is doing well during post op. They’ve taken her off the paralytic and she’s able to move and open her eyes every so often. She’s still intubated so this makes it hard to watch. She’ll cry and nothing come out, but shes mouthed mama and has settled when I showed up. Islia loves holding our fingers during these times. She’s been given a diuretic to help drain the extra fluid build up and they’re suctioning her out often (think nose Fridaish). She just had an xray and the nurses seemed pleased with the look of it. Her bedside nurse just stated it looks exactly as she’d expect if not a little better. Keep praying for our little girl. We appreciate all of you so much. 

This is the detailed (layman) explanation of what they found, and how the procedure went.

LUNG (Pulmonary Arteries) - There were 13 blockages in the right artery. ALL blockages have been cleared. The pressures were high in this artery because of those blockages (think like a garden hose thats been kinked; the water will leak through, but the pressure builds up in the hose). Normal pressure is around 25. Her artery pressure was triple that at 75. After the blockages were cleared, her pressure was 27. That’s a really, really good thing. They also spliced and connected some vessels to others to create better flow.

HEART - There was a large ASD (hole in upper part of the heart), which they closed without issues. The more challenging part was within the heart itself regarding the VSD’s (holes in lower part of the heart). Digital imaging/scans can only show so much, so they always knew the real presentation of issues would be known once they got into her heart. In total, there 8 VSDs that were closed, and one very small one left to close on its own as she grows. In all the decades Dr. Hanley has been doing procedures, he stated that this was the most he’s ever seen in one person. Despite this, the operation was a huge success in his eyes, and as previously stated in our last update, as good as it gets.  

At the moment of this post, she is laying in bed hooked up to many, many things, and quite sedated. They are actively removing the paralytic and she is beginning to move a little. Pain and discomfort will be monitored constantly by both us and the team, all of whom are incredibly attentive. She will remain intubated for the foreseeable future. Things are looking great, and we’re absolutely excited to share updates on improvements.

“If I knew I was going to get this result this morning going in, I would have been extremely happy, and so I am very happy. This is about as good as it can get from something this complicated.” Dr. Frank Hanley (her doctor)

We will do another more in-detail update once she is settled into her room. Thank you so much for all of your prayers. God does amazing things! 

The day has finally come. Islia is back in the OR getting ready for the surgery. Dr. Hanley will be meeting with us in about an hour and a half (10am pacific). After that it’ll be a while before we hear anything. Keep praying; it’s greatly appreciated. 

Yesterday was pre-op day! Islia had an echo at 9am followed by an ekg. After that we had a long conversation with the Physicians Assistant who walked us through the surgery. They will start the surgery at 10am (PDT) and it's going to be a double digit long surgery. They told us that the only way the surgery would be canceled is if A. Islia presents with symptoms of any illness, B. There’s no bed available in the ICU, or C. There’s an emergent surgery thats taking up an OR. The likely hood of these happening is very slim. We also have the doctor that takes precedence in the ICU, and being from out of state helps as well. If you’d like to hear the step by step details the PA gave us for the upcoming surgery please message me (Victoria). After that we had lunch, an X-ray, and blood tests done. We finally got back to the Ronald McDonald house around 3pm. We were all so tired that we went back to the room and relaxed before dinner. Today we will be going on a bike ride as Islia requested it. We will be having take-out chick-fil-a for dinner; which is Islia’s favorite restaurant. It’s going to be a long day tomorrow and we cherish your prayers. 

~Ashton, Victoria, Vanessa, & Islia 

We made it back to Palo Alto yesterday afternoon. Thanks to Aero Angel, a nonprofit that helps fly immunocompromised children to their destination of care, we got a private jet that left Reading PA yesterday morning. We found out on the plane ride (thanks to wifi) that we got a room at the Ronald McDonald house. Before this call we were flying there with no where to sleep because I had faith the God would make a room possible. We are now waiting for surgery day; taking it a day at a time. Thank you to all who have donated and/or are praying for us, it truly means a lot to us. We appreciate all of you so much!

Much love

~The Stewarts

What can I say? I’m speechless. We raised $910 in one day thanks to everyone’s kind donations. This isn’t an easy thing to go through once let alone twice. We’re always on our phones communicating with each hospital and her doctors, figuring out travel, and keeping my mom and mother in law up to date with the boys schooling. I’m exhausted to say the least. You guys make this icy easier with each donation. I love reading all of your kind words. It really makes my day. Let’s keep this going! We leave in 5 days!

We are officially less than 6 weeks away from Islia’s surgery date. Nerves are becoming more intense the closer the date gets. As of today (February 4th) the Stewart’s are also in lockdown to help prevent illness. This means we wont be having visitors, going to muay Thai, or even stepping into a grocery store. All things will be delivered to us or picked up. This really is no change to our lives as we already did most of these things, but hoping we can really limit exposure until surgery happens. Now for the travel update. Everyone has been brainstorming how to get Islia to California without getting sick. Everything kept coming back to RV. So I, Victoria, had been in contact with the organization that flew us out the first time and they were willing to pay for an RV if we got a quote. I called a few RV rental companies (there’s not many that rent out RV’s that let you go one way) and only 1 had RV’s in our area ready to go in March. This company however required the credit card for payment be in one of the drivers names. This was a problem because the organization is paying not us and they can’t reimburse due to tax clauses. So here were thinking we will be paying $3,200 for an RV since we knew this was the way to get Islia there safest. A few days later the head of the organization calls me and tells me she reached out to Angel Flight. I already knew Angel Flight was out because they help fly sick patients only short distances, but Angel flight told her about Aero Flight. Aero Flight is where companies lend out their private jet to sick/immunocompromised patients, I immediately fill out the form and get Islia’s cardiologist to write up something explaining why Islia needs this. I email it out. The following day I get an email saying that Islia meets their requirements and they will start looking for a flight for her. This all happened a week and a half ago. We still haven’t heard back from them on a solid flight, but my faith is strong and I just have this feeling that we will get one. 

We also got Islia’s genetic testing results back this week. They did find a gene that caused her heart defect. This is called the TBX5 gene. This didn't come up in Ashton’s or my genetic panel so it’s a mutation that formed randomly. Islia’s children have a 50/50 chance of being born with a heart defect. This doesn't guarantee that it’ll be the same complexity as islia’s. It may be more or less severe; we wont know until that time comes. As for today though we know that neither of us caused this its just happened. 

That’s all the news we have as of now. Just waiting for a flight and that's a hard thing to do. At this point we will need funds for food at the hospital. We hopefully will have dinners provided through the Ronald McDonald house, but we won’t know if we have a room until closer to the date of surgery. We’d appreciate any support we can get during this time. 

Love,

The Stewarts

Happy New Year everyone! We’re officially 8 weeks away from heading back to California. Things will start getting going again with scheduling life while there. Islia has been sick on and off since we’ve been home so praying this last illness was it. I’m so thankful for those that have donated to our fundraising so far. I know things are tight and tough with funds. We appreciate you all so much. With this next adventure we still need support for meals not provided by the Ronald McDonald House as well as flights back. If you can donate any amount we’d be so appreciative and thankful. 

Love,

The Stewart’s 

We’re back home.  We’re quite frustrated and emotionally fatigued, but here we are.  As of the last update, we had her CT scan and they got their confirmations on what they were dealing with.  During the previous appointment on 24 October, we were given the idea that we would have been 1st in line in case of a cancellation, or 2nd at the very least.  This was hinted at by the physician, and then stated by the scheduler.  It all seemed a bit ballparked, but we had the next appointment on the 27th to get more overt confirmation (appointment was the 26th, but they had issues with their machine).  The 27th rolled around, and we again asked about our position of priority in the lineup, and they gave us the “if we don’t contact you, contact us” phrase in regards to the following week after they had time to assess everything.  The conference was again brought up in discussion.  So, we waited through the weekend and started calling the following week to get confirmation that it was in fact true.  Several phone calls were made, but we never got a return call until later the following week on the 7th of November.

On the 7th, we were told that not only were we not in the 1st or 2nd position on the wait list, but not even in the top three.  It wasn’t specified what placement we were in, but at that point it didn’t matter.  It was absolutely devastating, and the wait through all of this time was beyond demoralizing.  Not much else was said on the phone worth mentioning.  It’s quite hard to put into words how it all felt.  We received amazing support from back home, and we do acknowledge that the pre-operation tests were in fact important (good for 1 year), but we feel as though so much time and money has been wasted not just when Islia got sick, but more so later when we waited due to poor communication.  We could have accepted the truth then and returned home without having to spend more money.  In hindsight, we realize we felt too comfortable thinking we were in 1st or 2nd placement in case of cancellation and should have personally visited the hospital sooner for answers.  For that, we sincerely apologize.  Quite frankly, it was hard not to be invested beyond what was reasonable.  We really wanted things to work out, and the difficulty in managing our expectations with the situation surely robbed us of a bit of clarity and good reason.

With nothing else to do there, we immediately contacted the social worker and were able to get tickets to return back the next day.  We missed Silous’ birthday on the 3rd, but we were able to make it back for Emyth’s on the 10th.  We surprised them, and we’ve finally been in our own house since then.  This is an update overdue (a consistent theme), but we’re just getting settled back home.  This has been burdening, emotionally and financially, but we’re completely grateful to everyone who has supported us through this trialing time.  

As for the “what happens now”, we were already rescheduled for March 13th the week our original surgery date was cancelled.  With all of the new testing completed, we’re going to have a conversation with CHOP to reaffirm that this is in fact the right route.  Knowing what we know now, provided CHOP still believes Stanford is the best direction, we will not be playing any more waiting games.  When we return, we’ll not be staying if she gets sick again, and will be flying back if it happens.  

Last note is about a hard reality.  Since we’re forced to wait, it’s a reasonable expectation that more damage to her left lung is likely to occur.  The situation itself is unfortunate.  We do not know why the communication happened the way it did.  Perhaps there was a sudden decline of another patient’s health status that made them a higher priority, or that there was a mistake in their assessment of the other patients in queue.  It can sometimes be difficult to make those assessments.  There is no way to know, and we cannot take it personally.  That is the nature of triage, and it does in fact happen where the more sick get higher priority, even if it comes at some expense at those less sick.  We cannot help that, and it’s easy to feel like our daughter is more important simply because she’s our daughter.  Having the exposure to the other sick children at the Ronald McDonald house, it’s incredibly humbling to be in the position we are with the conditions Islia has.  It could be much worse despite how progressed things already are.

Thank you, everyone.  We’ll update after each appointment here in Pennsylvania between now and March, as well as provide any new information as it comes to us. 

We’re back from the cath and lung perfusion test!  On Monday, 24 October, Islia went in for two tests that looked at the condition of her right and left lungs.  The results proved that her left lung has indeed been overworked with too much pressure in the blood vessels, and the right lung has a narrowing in the main artery going to it, which makes it operate at only 80% capacity (which is a GOOD thing - explained below).  However, despite the level of pressure her left lung has been experiencing, the severity of damage was not as much as anticipated, but the lung is in fact damaged.  

To paint a picture, imagine two bushes next to each other, with one wildly grown and the other recently pruned.  The wildly grown bush is a normal healthy lung, with all the blood vessels reaching all throughout the lung to get as much oxygen as possible and carry all that volume of blood.  The pruned bush would be the unhealthy lung, where many of the smaller vessels at the end branches are compromised or “pruned off”.  

So what’s the plan for the lungs?  Since the healthy right lung has the artery narrowing that makes it operate at only 80% capacity, the plan is to cut the narrowing in the artery and patch it so more blood flow can go into the lung.  This both relieves pressure in the left lung and also enables it to heal over time (never to 100%, though).  If for some reason the pressure changes aren’t to the degree they want, they may put a restriction band on the left lung’s artery to be later removed, but that will be decided on during the surgery itself down the road.

Our next appointment is this Thursday, 26 October for a CT scan.  Her physician from yesterday is wanting to discuss her in conference tomorrow, 25 October.  A part of that discussion will be to acknowledge that our intention is to stay here for at least two more weeks (or until funding runs out) after Thursday to try and get fit in for a surgery cancellation.  If we stay, the likelihood of us filling in for the cancellation puts us as either 1st or 2nd priority depending.

We are officially a week away from her heart catheterization! We need all the prayers possible for a cancellation as the date gets closer. This Wednesday marks 2 weeks until she could slide into a canceled spot since her pre-op testing would be all done. We have also re-registered for the Ronald McDonald house and will see if we have a room there on Friday hopefully. Thank you to those that have donated recently; we really appreciate all of you guys so much! 

Islia is all better!! We have rescheduled her cath and ct for the end of the month. Now the bad news: Dr. Hanley is booked through the new year for the surgery. However his assistant mentioned that since it’s cold and flu season the likelihood of a cancellation is higher. Dr. Hanley only does one of these types of surgeries a week, on Wednesday. Since we’re still here she, the assistant, highly recommended we do the cath and ct so that all they’d have to schedule would be the actual surgery and they’d pick us over another family since we’re here and diagnostic testing has already been done. So our hopes is that within the next 2 weeks someone cancels their surgery for either the first or second week of November. If we haven’t heard about a cancellation by November we will fly home and wait for another surgery date.

To All,

We’d first like to thank each and every one of you who not only donated to us thus far, but everyone unnamed and unseen.  We know decisions to donate go well beyond a single donor name, but spouses and family input were undoubtedly involved.  To us, a donation of $1 is no less significant or humbling than any larger donation.   Everyone has different means and life situations, and every little bit has been appreciated with that understanding.  We want you to be acknowledged for that first and foremost.  The support we’ve received is overwhelming and puts us in absolute awe of the generosity, sacrifice, and love that has been given and shown.

Now the UPDATE:  As of the 26th of September, Islia began showing symptoms of a runny nose and light cough every few hours, of which we had to inform the hospital of.  During her next day appointment, she was tested for many possible infections, which proved to be ‘Parainfluenza 4’ and ‘Rhinovirus’.  COVID was negative, so no worries there.  Islia is coughing with a stuffy nose, but otherwise doing well.  However, because of strict criteria and rules, they are forced to refuse any surgery until she’s no longer sick.   It could take two weeks to be over the sickness, and a required two more weeks to be clear of any other symptoms.  This means a total of four weeks before she’s rescheduled for surgery.  

Because of this additional month delay and costs associated with responsibilities here in CA and back home in PA, we’re compelled to ask for an additional $5000 to what we’ve already raised (this decision is discussed below).  The original goal amount was very purposeful, and was just enough to see us through what we thought would be the ‘longest’ projected timeline when considering the needs (we actually were slightly short in our calculations, as we were very mindful not to ask for more than what we thought was needed - and this new amount helps correct that).   We’re seeking this additional support so our family can remain together through this added timeline without adding risk to her health (also explained below).  

During the four week wait, we cannot be housed at the Hospital or Ronald McDonald house, but some friends who live 6 hours away from the hospital has graciously opened their home to us, so there are no expenses regarding a place to stay.

Why is this treated so seriously by the medical team? Even with a very mild case of flu, for a child it can make recovering from both the illness and surgery incredibly challenging by slowing the healing process and making her even more vulnerable to more illness or wound infection, possibly turning an otherwise vulnerable but routine healing process into a lethal situation.   The medical team wouldn’t even allow us to go through with it simply because of the increased risk if we wanted them to, not that we would.

So what happens now? We weighed options, and as mentioned we ultimately decided on trying to gather more financial support.   After the four week period (hopefully less), things should proceed as planned with all procedures and operations.  This is a big request, and we understand many may not be able to continue financial support for any number of reasons.   We again thank those who have supported us to this point.  Due to this change in circumstance, we’re reaching out again to all previous and new donors.  We are hoping that Islia is able to have BOTH her parents by her side at all times, and be able to support each other as a husband and wife.  We thank you all in advance for any and all help, both financial and in prayer.

Last Notes: It is important to convey that we ARE in fact thanking each and every individual.  It’s been difficult up to this point to actually sit down and dedicate time together in doing just that, but we did start.  This week will be dedicated to accomplishing that now that we finally are hitting a period without activity and are becoming more routined.

And finally, Silous (8) and Emyth (6) are doing well with their homeschooling back in PA.  They have had lots of visits with family and friends, and we couldn’t have done this without the help back home.  A special note is that their Great Grandmother from FL is visiting PA for a while, so it’s wonderful that they finally get to spend quality time together.  

As of this update, a last but not final thank you to family, friends, friends of friends, everyone’s openness and commitment to helping us make a difficult time all the more bearable.  God designed this journey, and He’s decided the outcome.  Regardless of what the end of this journey looks like, all things since it began are through Him, including who He’s brought to us and whatever purpose this all serves.   Praise God.