August 2023 – Mexico Trip part 3

Guest post from Elizabeth A.

Amaris, her mom, and I flew to Mexico June 26, and they spent the rest of the summer there. After my time with them, various ones of their family members took turns coming down to help: Ezra, then Amaris’ dad, then Pearl and cousin Candace. August 17, the young ladies went home and I flew down again. Then Amaris, her mom, and I all returned to the States August 28.

This post includes pictures from my second time with them and notes about some of the events of those days.

Monday, August 14, Amaris began to have no strength in her neck, so her head would flop if not supported.
On Thursday, August 17, a friend from the clinic – another patient – was able to find this neck brace at a pharmacy quite a ways away. We put it on Amaris whenever we needed to move her long distances – such as transporting her back and forth from the clinic.

When her cousin Candace left, she left some flowers behind to cheer Amaris.

This is a softer, less supportive neck brace that we sometimes used for while she was in bed or on the couch. Sometimes pillows were sufficient.

Amaris’ dear friends had prepared an envelope full of stickers for her, each one specially designed with something fun or encouraging written on it and a pretty/cute picture. The paper backer of each had a handwritten note on it. Every morning Amaris chose a sticker and we read both sides. It was something special to look forward to every day. It was such a thoughtful, sweet gift.

Her mom would put it in the journal for her, with both the stickers and personal note showing.

Friday, August 18, 2023 update for friends:

Whoever is down here with Amaris at any given time feels every moment his/her complete dependency on the Lord. And we’ve found Him to be so, so faithful. We daily count the miracles and blessings and answers to specific prayers….

Yesterday, we were all exhausted (all day) but when it was time to come home from the clinic, I knew we had to have God’s extra strength. Though Amaris does help some with pulling up to us when moving from bed to wheelchair to car, etc., she is weaker than last time I was here. We knew we would be loading her into a very high vehicle yesterday evening, and it was raining fiercely (it’s tropical storm season), and we’d have to transport her across the open courtyard at the apartment. I asked my parents to pray because of these extra complications. The rain stopped completely, and I literally felt God give me strength.

This morning, our usual driver fell through for us, and so we summoned an Uber driver. He was gracious and helpful.

When we got Amaris settled in to her clinic bed for her last IVIG treatment, we quickly realized that her phone had been left in the seat of the Uber car. (Her phone is absolutely critical.) We started praying and had our families praying.

Ezra (from home) went through the Uber contact online to try to report the “personal possession left in the car.” Of course, one complication with trying to call is that the Uber people in MX speak Spanish, not English. Somehow, Ezra was successful, and Uber said they’d get the message to our driver. But that isn’t how God answered our prayer.

No. Before any message came through, the driver had realized he had the phone, and came back to the drop off point. He let the security guard know, who then contacted the clinic desk, and they in turn told us. It was such a wonderful, big answer to prayer. The driver demonstrated he was willing to do it for free, but we gave him a tip, of course… In fact, as I think about it, I realize that that tip money is what dear Indianans gave me as they dropped me off at the airport so early yesterday morning, and rejected the money I offered them. “You might need this extra for something,” they’d said. Yes. Praise God.

We are grateful Anita got to get another massage today. Amaris’ treatment is going just as well as possible today, much better than yesterday, so far.

August 17-18 she had her second set of IVIG treatments. This picture was taken Friday (August 18) at bedtime. Even though the actual treatment on Friday went smoothly, afterwards her pain and nausea were so much worse than they had been (off the charts). She was much more sick than she looks here. Anita was reading an encouraging note from someone who was praying for Amaris.

Her daddy and siblings video-chatted and sang 3 hymns for her.

We had a difficult weekend with very little sleep. But God’s grace carried us through.

Sunday, August 20, 2023 update for friends:

…Every few hours she gets maybe an hour of rest, then Anita and I eat or rest. Other than that one or both of us is beside her, rubbing her tummy or head, playing music or prayer or Scripture recordings for her and of course frequently giving medicine (tablets and some shots), and trying to get nutritional drink or yogurt down her when she’s not too upset or heaving. We’re grateful for every bit of time that these things help her be calm….

She began speaking Mongolian overnight last night–She hadn’t spoken Mongolian in years.

Later…

She’s been more at rest more of the afternoon/evening. We are very grateful. Thank you so much for your love and prayers. She has loved the recordings from the voices of ones she knows and loves.

Late Sunday night…

Amaris is in bed asleep(ish? kind of) at the moment. Anita has been working on finishing thank you cards for the staff here. We have an early start tomorrow.

We’re supposed to be at the clinic at 10, for stem cell “injection” (goes into her port). We don’t know if they’ll do anything else.

Please pray for the doctors to have wisdom if anything else should be done for her prior to her return home and that the doctors will have time to communicate with each other adequately. They are all three back now, but two were on extended vacations in the middle of Amaris’ care….

I shouldn’t be so amazed at how God is strengthening and helping us, because you all are praying and loving and lifting, but it has surprised me that Anita and I have been able to exist today on so little sleep. Please keep praying for us emotionally and mentally and physically. We both have head colds and Amaris was starting to have symptoms too, tonight. (We found out Tuesday that it was actually Covid…)

After a very difficult weekend with very little sleep, here we were Monday morning in the apartment parking garage, waiting for our ride to the clinic. It ended up being a very long day at the clinic. When we returned home, we had sleeping medicine that enabled Amaris to sleep well that night. We also were able to get medicine to keep the nausea and pain under control. We were so grateful.

The next day we passed out our Thank You treats and personal cards to the nurses and other clinic staff.

That was also the day for the last in-person consultation with Dr. Omar.

Tuesday, August 22, 2023 update for friends:

…We are encouraged that the medicine is working because of the increase in her mobility of legs and movement of fingers, and this is the first time she has communicated with the doc clearly. And she’s more emotional, expressing herself, even in anger. Very typical Bartonella and PANS reaction to this IVIG treatment. Dr feels she should get more of it to complete the dosage (40 mg more/4 more days — double what she’s had so far, after we’ve been home a few weeks.)…

This is the first time she’s been diagnosed with this (PANS), and doctors knew what to do about it….

We’ve been keeping her nausea at bay by gently massaging her tummy.

The treat we made to give other patients (and other people) who had been part of our time there. On the back was a bag of mint tea.

We made the doctors personalized cards like these, and Pearl and Candace had made them a chocolate gift, which I failed to get a picture of.

Candace and Pearl had made the cutest little cards for each of the nurses/staff and a few other special people, and Anita wrote special messages to each person, thanking them personally.

August 22 – Amaris with nurse Sulema, who was her nurse a lot of the time

Nurse Eric – infrequently Amaris’ nurse, but one who could find a vein, which is quite the feat!

Rosario, the massage therapist who did Amaris’ lymphatic massages

Fatima, the head nurse – besides managing the wonderful nursing staff, she also came to our apartment twice to attend to Amaris.

August 23 – It’s not every day you get to watch little tikes learn soccer while an afternoon storm rolls in over the mountains.
(This was at our third floor apartment.)

This picture was taken August 25 when nurse Fatima came to draw Amaris’ blood at the apartment. Earlier that week we found out that all three of us had Covid, and so we weren’t allowed to be on the main floor (4th) of the clinic for any of the rest of our time there. They had to test Amaris’ blood to make sure she was doing okay because she was sick.

We went to the clinic that evening because Amaris’ bloodwork indicated she needed an IV, but we had to stay on 3rd floor. The doctors came down to talk with us. This was our last in-person visit with Dr. Omar on this trip.

August 25 bedtime, listening to a recording of her Daddy singing “The Haven of Rest” while playing it on his autoharp, while her Mommy rubbed her “grumpy” tummy.

Saturday, August 26 – waiting for our final ride to the clinic – time to get Amaris’ port out. (All week long we had been thinking, “This is the last trip, and she’ll get her port out”… but that was delayed until Saturday.)

Getting her blood tested one last time to make sure she was good to go and wouldn’t need any more IVs. (Nurse Natalia)
After the tests came back, Dr. Liz came and took out the port. *Free at last!*

For the last couple of days there, I got to do a lot of pharmacy shopping – collecting all of the prescription drugs they needed to take home for her next two months of treatment at home. PV is full of pharmacies, but you can only get *some* of what you need at *each*, so you have to go to multiple pharmacies. This particular one was in a tourist area of town, in an outdoor mall. (This was Saturday afternoon/evening.)

After the Lord gave me success in finding the necessary medicines, I walked out to the beach (same neighborhood as the pharmacies I went to that evening) and snapped a few pictures before heading home.

Sunday morning, August 27 — eating breakfast (a bite every 5 minutes), getting a tummy rub, and reading the sticker of the day from those two dear friends

Monday, August 28, 2023 update to friends:

Travel day! We leave for the airport at 9 am. No matter how it goes, it will be an exhausting day for Amaris and Anita especially. Please pray for all to have calm nerves. Pray for favor with the flight attendants, as we will be asking for permission to have Amaris’ legs up in our laps during flight. God has been so faithful to give grace for every circumstance, and we are choosing to trust and rest in Him for today’s needs. Thank you for your love, care, and prayers.

Later…

At our gate. Hither to hath the Lord helped us! Our Uber driver helped us load our luggage. An airport helper took the luggage to check-in for us. And, of course, we have a wheelchair attendant.

Monday morning waiting at our gate at the airport.

On the plane: She was allowed to sit sideways and put her legs up on our laps. We were grateful, because that’s what she needed. We all arrived home to our destinations about the same time – before 11 pm, I to Indiana and they to Salem, MO.

August 29 – home again in her own chair with her dearly loved Frosty

“Thank You, Jesus! I love You! Please help me!”

Leave a Reply Cancel reply