2020 11 23 Spaulding Day 31 (110+/- total)
Today was a good day. Today was one of the better days that we have had in the past 110 days.
We can honestly say with no doubt that we have been through very truly trying times. The days of our recent past have been long and the nights never seemed long enough for the required prayers and rest needed for the following day.
Thirty one days ago we entered Spaulding rehabilitation facility with a child that we barely recognized mentally, physically, nor emotionally. Alex was now a child with many more seizures, very lethargic, emotional, traumatized, scared and non trusting of anyone who would come near him (and rightfully so).
Pre surgery Alex was loving, kind, playful and all smiles when not within his seizure episodes.
In the past several weeks, rehabilitation therapists have tried to work with him, but seizures, medications, aggressions and his behavior within it all, kept him from making progress. We understood the long, rough road ahead of us but never truly understood it until living with it.
The teams of doctors, nurses, and all of the therapists within the rehabilitation facility work very closely with Alex, with each other, and with us the parents. Today, thirty one days since we entered through these doors, we believe that we are finally witnessing an Alex that is not so afraid and aggressive. Bringing him back to the true "Captain Alex" that we know and love may now be a little easier and upcoming therapies more productive.
The doctor teams here meet us daily. I have seen thier frustrations on mornings when the previous days reports had Alexs number of seizures, his anxieties and his aggressions up and over the top. They have met us daily, have listened, have coordinated and communicated with Alexs teams of doctors at Boston Childrens about his medications and strategies.
The medication adjustments are slow, but unfortunately they are exactly what we need to get him back to himself.
Today, day thirty one we had three therapy sessions where he somewhat trusted the therapist and cooperated for a longer portion of the session. Alex is still far from controlled, calm and collected, but he expressed tolerance and desire.
During Speech Therapy today he made a choice and somewhat voiced his preference.
During Occupational therapy he was somewhat calm in letting the therapist stretch him out and allowed her to tape his hand up for better gripping.
During Physical Therapy, he sat on a bike and semi pedaled. He was happy, he smiled, he tolerated it for a while and was able to listen cooperate and let us know when he was all done. He still shows anxiety and or fear of the unknown.
How many of us have anxieties or fears? How many of us want to scream out at the top of out lungs when day after day things do not go our way? Alex lost his voice and ability to communicate for a very long time... Now that he has found his voice he wants to use it....if he can not retrieve the words....or if believes that no one is listening.....then screaming at the top of his lungs seems to be his form of communicating his aggravation.
Today he spoke (broken words, slurred words, some words incomprehensible) today he made choices and somewhat voiced his opinion. At day one hundred and something, I saw my kid sit on a bike midday and I heard him choose "bike" as an option for his nightly activity. Tonight I saw my kid smile as he semi pedaled around the halls of this rehabilitation facility while listening to his favorite music in tow.
Months ago I prayed for this day. I prayed for these smiles, recently I've prayed for stronger cycling around these here halls, I've prayed for walks around this hall. I have faith in it, I have faith in this facility and its therapists.
On day thirty one I am happy for my kid, I look forward to hearing his voice and words when he sings and I look forward to hearing the sounds of his slaps against the piano keys. I look forward to chasing him around the hall while he pedals and I look forward to holding his hand while he walks the halls and climbs the stairs of the gym.
Lord...thank you for these better days, thank you for reducing the aggression, thank you for calming him down. Lord I ask that you give Alex the strength and courage to tolerate and cooperate. I ask that the right people at the right time help him through to the next levels. We need to simplify Alexs life. We need an Alex that can stand, walk, bike, and communicate. I have found that the road is long and pretty rough. The road behind us was a lot rougher than the road that we are on today. Physically, mentally, emotionally, we have endure a lot....when we are down and think that things are not going as they should, we get a day like today where the kid smiles, the kid makes a choice and the kid pedals the halls with his music as his motivator.
