Updated: Oct 15, 2018
For ten years I blogged about our journey on another site. START HERE.
On September 15th, 2006, we received “The Call”.
“A baby boy” she said, "born in a small clinic, named Alejandro.”
That was the day we fell in love with our son. AJ (Alejandro Jas) was born in the sping of 2006 in a small clinic in southern Guatemala. He was premature, weighing just 3 lbs 8oz. He spent the first month of his life in the hospital due to respiratory distress and neonatal pneumonia. In July 2006 he was released to a private orphanage in Guatemala City.
We saw his picture for the first time. That picture…was worth more than a thousand words. We were told he was happy, healthy, and doing well. In late February 2007, we flew down to Guatemala to meet our son for the first time. His caregiver, S, picked him up and I thought she had the wrong child. He was so tiny…We spent the shortest 24 hours ever with him and then took him back to the orphanage. That was, up until that point, the hardest moment of our lives. It wasn’t until I handed him back to S that my heart fell apart.
Our case was still not approved by May, so we made the decision that one of us should be there to celebrate his first birthday. Daddy, in an effort to save time off of work for the pick-up trip and the days following, stayed home, and Grandma came along for the trip. It was a few days before his birthday when I saw my son’s face again. There he was, smiling in S’s arms. We were able to spend a few days with him this time. We celebrated his first birthday by blowing out a “1” candle that we stuck into the hotels famous pancakes. AJ was sick, as he always was when we visited him. We also discovered he still wasn’t eating solids, which was beginning to worry us.
Then it happened…on the last evening Grandma and I were with AJ, I checked my email in the hotel internet room. Celebrate it said…You’re out of PGN! Our case had been approved and AJ was officially our son! I ran across the courtyard/dining area and scared Grandma as I burst in the room and shouted “We’re OUT” with tears streaming down my face. I called Daddy and shared the news. The next day we returned him to S and she was surprised I wasn’t bawling. Knowing we would return in a few short weeks calmed my heart and I knew he was in good hands with her. We flew home on his actual birthday…I remember seeing the Summerfest fireworks from the plane window. Happy Birthday AJ, I thought…
On July 25th we flew to Guatemala City for the final time. Our son was placed in our arms at 5:47pm on Friday night, the 27th. He was sleeping. Reality begins to set in. We spent the weekend bonding with our son before his US Embassy appointment on Monday. All went well, as our tiny little son, weighing just 13 pounds at 13 months old wearing 0-3 month clothing, slept in my arms as it became official: he was ours in the eyes of the United States.
We flew to Houston on Thursday and stayed overnight with family. Friday afternoon, August 2nd, we arrived in Milwaukee with a very sick child. He had been violently ill on the plane. Family and friends that had gathered to welcome us still tell us AJ looked “Green” when we came up the terminal. Once in the car on our way home, AJ became fire hot and was ill again. We both looked at each other and said “hospital or urgent care.” We opted for urgent care. He was diagnosed with a 102 fever, an upper respiratory infection, and double ear infections.
Oh what we didn’t know then…Here we are; a year and some months later, in the midst of testing for cochlear implants.
AJ was diagnosed with profound hearing loss on November 28, 2007. We were told there were no responses on the ABR test for either ear. An appointment for hearings aids was set up although we were told with his level of loss, they usually don’t do enough. A few days later, on December 5th, AJ was diagnosed with cerebral palsy. A mere hour after that appointment, my Dad lost his long battle with cancer.
Our world came crashing down in a matter of days. We tried to blow things off when we told other people. “Well, we thought he had some hearing loss because he wasn’t responding to us, and well his CP isn’t that bad.” Inside, we were beyond devastated. AJ was also diagnosed with failure to thrive and esotropia (crossing of the eyes).
AJ is TRULY our Guatemalan Miracle. We now have an absolutely wonderful team of specialists, therapists and teachers that follow him. It is now estimated that AJ was born 8-10 weeks early. (We had been told 4-6 weeks with his referral). AJ began receiving physical therapy and occupational therapy shortly after we arrived home. He was basically a newborn. He could flip over (not properly) and that was about it. He could not support his own head, bear weight on his legs, sit, stand…the list went on.
Early Education through the Center for the Deaf and Hard of Hearing, along with Speech and Feeding Therapies through Children’s Hospital began in January of this year. In one year, he caught up a full year in most areas. He is a smart cookie. He crawled a day after Christmas last year. He can walk, although his preferred method of transportation in still crawling. He averages about 6-8 feet in length when he walks. The fact he is walking-is a miracle in itself.
He can eat with a spoon or fork, although he prefers his paws (what 2 year old doesn’t?) He drinks from a sippy cup. He uses two hands for most things. He has become very vocal since he’s been mobile…his vocalizations continue to increase as he’s walking and has now had his hearings aids for over 10 months. His weight is still an issue, as we are currently sitting at 18lbs 13.5oz at 27 months old.
He had loaner hearing aids until May of this year. His new hearings aids did not give him anything more than the loaners. AJ –with aids- can hear environmental sounds, around 70dB. In early July we attended the Cochlear Implant Picnic and met with a very nice family whose 2 year old had bilateral implants. It was the best thing we could have done. We finally saw a child with implants and spoke to the parents about their journey. For the first time, we felt “ok”, someone knows how we are feeling and has been through this before.
On July 9th it was FINALLY decided that we would begin the cochlear implant process. We are over ½ way in the process, with only a booth testing to go, psychological evaluation, and surgeon consultation to complete. AJ’s surgeon is his ENT, so we are familiar with him. Daddy and I are very much ready for our AJ to hear. While he is recognizing sign language, we must remember he had no language at all for the first 13 months of his life. He wasn’t exposed to signing until 9 months ago, and didn’t hear until 10 months ago (with his aids). Technically his hearing is that of a 10 month old or less, language is at a 9 month level or less. He definitely understands about 20 sign words. Wow-now that I’ve counted-I hope I remember to share that with his Early Ed .Teacher this week! His specialists (where applicable) feel that his hearing will boost his developmental delay. Daddy and I strongly believe this. We will do whatever we can for our son.
AJ has taught us patience, determination, and never-ending love. At times, our world is very lonely. We don’t know many other parents that have a child with two disabilities. It has only been in the last few months that we have found support through other CI families. AJ is the definition of taking one day at a time. One of his contagious smiles can light up a room. His giggle is hilarious, especially when he’s tickled. We love our little man, and can’t wait until the day we can tell him “We love you, AJ”…and he hears us.
So, should we ask the question for you?
What is a cochlear implant?