To say we were eager to get to Guyana is an understatement. We had been pushing and pushing to get every required document completed for 5 months. Finally the moment we had been looking forward to was here. We couldn't wait to meet our girl! We had anticipated this two week bonding trip would be one full of relaxation with Aria, enjoying the tropical weather, and seeing the sights of her birth country. Unfortunately, our expectations could not have been further from reality.
We arrived to Guyana late in the evening and the very next morning we were on our way to the Child Protection Agency to meet our sweet girl. Her foster mom, Joycelyn, placed her in my arms. She was the most precious little peanut all dressed up in a pink and clearly not sure what to think about this new lady that was holding her.
Our joy and excitement quickly turned into fear and despair as I gazed upon the huge bulge on the top of Aria's head. It was clear she had hydrocephalus. I began asking the social workers question after question - When did she last see neurology? What did he have to say about this bulge? Did he mention she needed a shunt? They all stared blankly at me, seemingly unconcerned. We would learn that Aria had missed her last neurology appointment and that we'd need to bring her to see the neurologist on Monday. It was Thursday so we just had to make it four more days before she could get the help she needed.
Those four days felt like an eternity. She was in so much pain that she slept most of the time, barely ate, and cried when she was awake. Her body was stiff as a board. We consulted a recommended pediatrician the day after we took custody. It was a disappointing visit. He couldn't see past Aria's medical crisis. He took one look at her and told us to leave her behind. She would be too much of a burden for our family. He confirmed the hydrocephalus and said he couldn't help her - that she'd be fine over the weekend and to take her to the Monday Neurology appointment. We left in much despair and still no help for our daughter. If only I had known what I know now, we would have have headed straight to the ER at Mercy Hospital the day we got her. Unfortunately, not knowing the medical system in Guyana, we continued to listen to those that did.
After a painfully long weekend, Monday had arrived. With the help of Aria's foster mom, Joycelyn, we checked into the waiting area at Georgetown Public along with at least 100 other sick people waiting for their names to be called. Finally, it was our turn to see the neurologist. We had been told we'd be seeing Dr. Dukhi, the renowned Guyanese neurosurgeon, but instead it was a doctor from Cuba who only spoke Spanish. He clearly did not see the worth of our daughter. He assumed her comatose state was due to her brain abnormality when in reality it was due to her hydrocephalus. We were told her surgery was elective and the next available opening was in 18 days - 18 DAYS she'd have to wait in horrendous pain. This was simply unacceptable.
The doctor at Georgetown Public Hospital requested that we get Aria's MRI scans updated, so the next day we drove to Mercy Hospital for a sedated MRI. After watching Aria suffer for 5 LONG PAINFUL DAYS, we finally found someone to help. Aria's guardian angel came in the form of an MRI technician who was aptly named Emmanuel. Emmanuel took one look at Aria's scans and before they were even complete, he was texting the head of Neurology, Dr. Dukhi, asking for his help. Dr. Dukhi agreed that Aria needed a VP shunt placed ASAP and scheduled her surgery for first thing the next day. These amazing men saved our girl!
The morning of her surgery was a huge relief, yet at the same time, a great anxiety set in. Brain surgery on our frail one-year-old is terrifying enough to think about, let alone having the procedure done in a 3rd world country. Would this be the last time we saw our sweet girl?
The minutes, turned into hours as we waited for her surgery to be completed. It felt like an eternity. Just as panic was about to set it, a nurse popped out of the operating room letting us know that surgery had been a success! For those that wrapped up our sweet girl in prayers - THANK YOU! This nightmare was now over but instead of being able to concentrate on helping Aria recover, we were dealing with yet another disaster.
We found out the day before surgery that the US had closed all adoptions from Guyana. Once again, our hearts sank. This meant that while Aria's adoption could be finalized in Guyana, the US would not give her a visa to travel home. She would be stuck indefinitely in Guyana where it was quite clear her medical needs could not be met.
With Aria on the mend, we set out to contact friends, family, US Senators, even strangers asking for them to email USCIS on our behalf. We were hopeful that because we already had I600a approval from USCIS, that we'd be grandfathered in and able to bring Aria home.
As Aria's health improved, we started seeing her true self - our sweet, smiley, giggly little peanut. Seeing her peaceful face no longer in such horrible pain melted so many fears away. It was a beautiful sight to see her feeling so much better.
Our two weeks in Guyana was coming to an end. From the lowest of lows to the highest of highs, the trip was an emotional rollercoaster. On our last day in Guyana, we got some exciting news. The Department of State was trying to reach us! They wanted to speak with us about our adoption (thank you to all who emailed them!!)
As we pulled up to Aria's foster home, the DOS was calling us for the 3rd time that day, but this time we were finally able to pick up. We were told that since we already had I600a approval, if Guyana agreed to finalize Aria's adoption, then the US would process our case and grant Aria US citizenship!! This was the most amazing news! She would be coming home soon!
We were so thankful to hear that news as moments later we had to say "goodbye for now" to our little angel as we placed her back into her Foster Mom's arms. It was heartbreaking to leave her behind and not know when we'd see her again. But the sounds of her giggles playing with her foster sisters brought so much comfort as left their home.
What an emotionally draining two weeks! We are so very thankful that our prayers were answered. A true miracle after miracle!
Our little peanut has come so far since then. She's a completely different kid. She amazes me every day with her determination and persistence. Her head control has improved by leaps and bounds. Her left hand has gotten stronger and more coordinated. She's using the proper grasp more and more (before she held toys between her pointer and middle finger). She has one heck of a grip with that hand - shaking her favorite toys, putting her pacifier into her mouth, and yanking the heck out of my fingers. Ouch!
She is alert and interactive and such a happy girl! She likes playing with her siblings, bouncing in her jumperoo and bopping along to Baby Shark.
While we originally didn't think Aria had use of her right arm, it turns out we were wrong. She most definitely can use that arm when she REALLY REALLY wants to. It is hard for her and not coordinated, so she quickly diverts to the use of her left hand whenever possible. But what an exciting discovery!
Another huge accomplishment for our little peanut...she's started rolling from her tummy to her back! While she hates being on her tummy and still won't roll onto her stomach, this is still a huge step for her.
Our house is quickly filling up with equipment that can help our girl reach her fullest potential and just enjoy life. Our school district lent us a bath chair so Aria can bathe safely and comfortably. She absolutely loves bath time in her chair. She splashes so much that I'm drenched by the end of her bath.
Aria's high chair was no longer supporting her needs and I stumbled across a used Rifton Activity Chair on Facebook being sold for a steal. It's an amazing chair that can tilt as well as raise/lower. Now she can more easily participate in family activities as well as being properly supported while eating.
Her most exciting piece of equipment is her new gait trainer (another loaner from our school district). She's only been using it for a short time period but we are so excited to see the progress she is making as she learns to take steps. We have high hopes that one day, she'll be able to independently move herself around with the use of a gait trainer.
Add to that all her specialists that we've consulted with - Neurology, Neurosurgery, Orthopedics, Physical Medicine and Rehabilitation, Gastroenterologist, Nutritionist, ENT, Endocrinology, Complex Care, Pulmonology, and probably a few that I'm missing. Thankfully most of those appointments didn't result in any big and scary new developments.
When COVID hit and all appointments went on hold, I realized what a blessing it was to be able to stay at home and focus on Aria's two most pressing medical issues - Failure to Thrive and Bilateral Hip Dysplasia.
Eating has always been a challenge for her. A weak suck/swallow reflex as well as needing a substantial amount of time to eat and only eating small amounts each time has contributed to a very slow weight gain. Her original Complex Care Nurse Practitioner was adamant that Aria needed a G tube placed as soon as possible. And I was adamant that Aria be given a chance to prove her wrong. So I went in search of a new Complex Care NP. Thankfully I found her. With her help, a nutritionist, Feeding Therapist, and GI, Aria's growth curve is finally going in a positive direction. And now that we are home, we can spend the extra time she needs to get every calorie in her. She is now getting closer to the growth curve and just hit 20 pounds! Another huge accomplishment!
A surprise to us after getting home was finding out Aria had bilateral hip dysplasia. Because she never bared weight at an early age, her hip sockets didn't form correctly. They were about 60% - 70% out of socket. Our PMR doctor told us it was essential to keep her hips in socket. If they were to pop out before the socket properly formed, it would be a losing battle for the rest of her life. Thankfully our school district had a stander that we could borrow immediately and not have to wait for insurance approval. With the help of the stander, Aria could start baring weight and we were hopeful with daily use that her hips would improve. Her PMR doctor along with her Ortho had been closely monitoring her hips and preparing us for tendon lengthening surgery in June if no improvement was made.
Aria was standing in abduction for 7 hours a week until COVID hit. Then we boosted it up to 18 hours a week standing at 55 degrees abduction. We had high hopes that her hips would improve due to the amount of standing she had been doing. In May, I requested updated x-rays hoping that her hips had improved and perhaps surgery wouldn't be necessary. Unfortunately, the most recent x-ray showed one of her hips had progressed to 90% out of socket.
Due to COVID our Orthopedist is on leave and we have been left hanging unsure what the plan will be. We have an appointment with a different Orthopedist in a couple weeks to figure things out. But I'm still hoping for a miracle as I really don't want Aria to have to go through a painful procedure cutting the tendons on both legs and then being casted for at least 6 weeks. She has come so far developmentally, I'd hate for this to set her back. Any prayers for hip improvement would be much appreciated!
Our new lives in quarantine look different than before. After no therapy for many weeks, we've started up with virtual OT and PT. By luck, we were assigned a new PT who we love and hope we can keep. She is our 4th PT we've seen. We've finally found someone who can see Aria's potential. Cerebral Palsy has a scale from 1 to 5 with 5 being the most severely affected. Our last PT said Aria was a 5 (having severe head and trunk control limitations), but our new one disagrees. She thinks Aria is a level 4 (being self-mobile with the use of powered mobility assistance) with potential to be a level 3 (walking with adaptive equipment assistance!) Aria is surpassing everyone's expectations!
While we don't know what the future will hold, we do know our girl is fighter. She is so much more than her diagnosis. She is FULL of potential. We are thankful to have a new team of therapists that see her value and won't limit her future based on their expectations. We have no doubt she will continue to amaze us with her progress and are so excited to help her reach her fullest potential.
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