2020 11 23 Day 31

 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.

2020 11 14 Rehabilitation

"God, make a fresh start in me, shape a Genesis week from the chaos of my life. Don't throw me out with the trash, or fail to breathe holiness in me.  Bring me back from gray exile, put a fresh wind in my sails!" Psalm 51 : 9-11 MSG

A few photos of Alex progress at rehabilitation. It has not been an easy road at all. Alex was and is having trouble managing seizures. Seizures require medications that sedate and or over sedate. The seizures and the sedation of the seizure medicines cause nappy, nappy, nappy. Unfortunately one can not nap and receive the required therapies. We have had several weeks of medical revisions with the intention to get him to a point where he is medically stable. Once Stable we then need willing and able to cooperate.  The teams of therapists and doctors all work together and with us to learn the "New Alex" schedule and to see what is best and what works best for Alex. It has been three months since Alex walked or talked on his own. We may have a long road ahead of us but there are days where we see progress. We see some progress, we have some steps forward, a few steps back. A few steps forward and a few steps back ...a dance...its better to have ability to dance than not dance at all.

Walking is a difficult task. Alex lost muscle in his legs from laying in bed for so long and he lost communication to his left from the stroke. He tries hard to get up and walk and then realizes and or remembers that it hurts now.  Sometimes he cries and sometimes he cries through his laughter.

 
Physical Therapists and walk assistance. 

Physical therapist and standing techniques.
 

Dads Music therapy seems to get Alexs attention.  He appears to be excited about a song, a rythm, a beat. He shows interest in wanting to listen as well as participate. The listening may become over stimulating at times and he will break down into a cry or aggressive behavior. Finding the correct balance of tolerable sound while moving forward toward his participation are key.  Mom and I try various strategies almost hourly with the intention of learning about the New Alex.

Alex is yet unable to walk. We push him around the floor when traffic is least. With Covid regulations in place, we are very limited to where we can travel and where we can hang out. We play find the stop signs in the hall before retreating back to Alexs room

This week he started tasting his favorite dressing. He is having a difficult time swallowing so we start with a thick liquid on a sponge swab. We started last Sunday and a week later he asked for "ranch". 

Alex loves the piano in the lantern room. Every night we ask if he wants to go play piano and he sits right up in bed.  He is still finding his way of communicating. He shows movement in the wheel chair, he shows attempts at vocalizing. He gets extremely frustrated when the sounds dont come out the way they used to. I can do no more than trust that time will heal these infirmities.

2021 CTF C4C cycle4cures Team Mary

2021 C4C Team Mary.

Lenny

Mary

Lenny . Mary . Vincent

And Mary

Manny

Steady Eddie and Elmo

Jimmy

2019 the team jersey was dedicated to  Alex and centered around the epilepsy foundation of Connecticut. Last year the team jersey was non existent due to covid 19. 

For this upcoming 2021 season and year the team and team jersey will be designed for and dedicated to our very own Mary T.   Mary has been a crucial member of this team that we now call family for as long as we can remember. We have to admit that Mary is definitely the cyclist that has most improved over the years. As we all grow older together, some of us decrease in speed and reduce our distances. Mary seems to have excelled in speed, distance, technique, leadership, etc.  The Mary that was once shy to ride in the rain ten years ago managed to ride various countries and various states through all types of weather and illnesses in the past several years. New clips, new wheels, new bike and this girl is unstoppable. 

Mary is an inspiration to all of us.  When rides get tough she keeps pedaling. She puts her heart and sole into the ride. On the road she puts one foot in front of the other...every now and then. . at the end of a ride she pulls a bottle of  "angels envy" from the back pocket of her jersey and passes it around for all to drink from... Every team needs this type of inspirational motivator...C4C has always been and continues to be  blessed  in having and receiving Angels Envy from Marys back pocket.  

2020 11 07 speech

2020 11 07 Spaulding Rehab

I found that after all of this poor kids frustration .... a little patience (a lot of patience...really) in letting that storm pass....and Alex finally got into his element and begin his speech therapy toward communication.

Our days are long and tiresome. We are so great full and thankful that our nights are quiet and restful.

Alex is now at a point where medications have been ever-adjusting to a point where we administer meds only four times a day. A few weeks ago we were administering medications seven times a day. On Monday the 16th of November we may go down to 3 times a day. This past week we have finally cleared the last medicine at 9pm and first morning medicine at 6am so Alex and I now have ability to get nine hours of peaceful rest with no intrusions.

It has been over 3 months of professionals walking into the room several times per hour....every hour. Alex and I are in quarenteen from the outside world, yet we get several visits from various doctors hourly. This past week we eliminated meds and feeds from the hour of midnight to six am. This may seen trivial, but my goodness it is much needed rest.

Ive been getting up at 530am to get Alexs feed started earlier so that he is free from tubes by 8am. We are making all attempts to open his schedule for therapies.

Alex is tired. Alex is frustrated. Alex currently fears every new white coat or scrub with a stethoscope. Alex has lost a lot of trust in people and rightfully so.  It is taking alot of patience and calm voice to figure him out. His lack of communication is frustrating him. We are all working feverishly to learn his current form of communication. As a dad and an onlooker it is so so frustrating to see. I feverishly make attempts at guessing what he may or may not want. Mom and speech therapists are working on picture cards and word boards.

Saturday morning while watching a dvd Alex was frustrated. I put on "baby neptune" and he wanted "baby noah". He kept pointing at the dvd and banging his arm on the surface below him. I repositioned Alex in several chairs and couches in the room, but no success in consoling him. I put him back into the bed and changed the video. Once he heard the "baby noah" video, he lightened up,  cracked a smile and had a complete change of mood.  Mom sat next to him in bed and he began to mouth words. He and mom began naming animals and I found that after all of this poor kids frustration .... a little patience (a lot of patience...really) in letting that storm pass....and Alex finally got into his element and begin his speech therapy toward communication. Alex was wording, feeling and hearing himself speak. It was so interesting and so heart warming to see. He held his mom, he watched the dvd screen and he was naming animals on Noahs ark. He wasnt pronouncing the words completely, some were whispers and some were louder, none the less....he was wording, he felt and heard the words and he was communicating with his mother.

At 1030 this poor kid was soo frustrated, we dont know if he was in pain, if he was mad, if he was frustrated nor did we know what he was frustrated about. He was not happy and he was showing aggression that I have never seen before in him. Then at 1115 he was the happiest that ive seen him all week as he whispered the sounds "ephant. Nect. Big. Baby. Anda. Boat. Right deer. Zeba. Sobig. Lion. Roar. O my god. "

Within the same hour I saw a truly frustrated kid and a truly happy kid. He is a happy kid inside this shell of his body, he is in there and he is trying to come out.

This afternoon we will try PT. OT. and maybe a shower. Everything frustrates him so we take things slow and walk on egg shells

This is all new. This isnt easy for him nor anyone who witnesses. The frustration isnt pleasant to watch and I hold back my tears as he cries his. The emotional roller coaster continues, when he cries in pain or frustration i hold back a cry with hopes to express to him strength and stability....yet when simple sounds of his weak voice whisper "ephant, zebra and anda" there just is not an "emotion army" big enough to hold back my tears.

2020 11 05

2020 11 05 Rehabilitation Day 14

545am morn medicine time view from Alexs window

Alex is in a rehabilitation facility. Every day we make the attempts to be more alert, a little more awake and a little stronger. Every morning our prayer is focused on making today a better day than yesterday.  Every day is focused on making our morning prayer come true.  Every day is a challenge and thus far no day has been easy. Every day is busy and within all of the business, every day we strive for at least one or two things that we can consider a success. 

It is heart breaking to see any child, who was once a firecracker, be laid out and so extremely frustrated with the inability to talk, sit, stand, walk, run nor ride a bicycle.

Alexs medications have not yet controlled his seizures and at this moment it appears as though this entire surgery and these last three months haven't done anything progressive.  

He is strong, he is here and the rest of us adjust his game plan hourly with hopes to get him up and running. Alex is on a lot of medications, requires therapist for speech, communication, moving his arms, moving his legs, etc.  At this moment Alex is out of the hospital environment and in a rehabilitation facility that could be fun while being extremely productive. Unfortunately he is extremely frustrated at everything and everyone. He wants to do the simple normal stuff that he once did but mentally and physically can not. His inability to communicate leads to his frustration.  

Last Thursday he was able to stand a few times a day, sit a little at a time, and that was all.

Today Friday he is taking about 20 steps with assistance, beating a drum every now and then and trying real hard to speak.  He has sat up in bed on his own and he has asked for "mario kart" and has whispered the word "chocolate" .

Currently the kid is fighting real hard.  He is tough, but these seizures, the medications, and his inability to move or communicate are kicking his ass.  The meds make him sleepy and aggravated etc.  He is often wiped out, aggravated or sleeping during scheduled sessions.  We have adjusted and continue to adjust feed schedules, medications and medication schedules etc.

We have a strong team of Neurologists, Neurosurgeons, Doctors, Attendings, Nurse Practitioners, Nurses, PT therapists, OT therapists, SLP therapists, etc.   We need to get these seizures under control so that little man can function and so that all of the therapists can succeed in getting Alex back to being Alex . Last week he was a bit happier than he is at the moment. Last weekend he took his first steps with assistance. Last weekend he mouthed a few words in song. Last weekend Alex smiled and showed a little happy. I pray to see a little happy Alex this weekend.

Monday we return to Boston Childrens for an mri that will tell if 2 infections are gone or under control. We pray for the good news of no more infections. When we get that good news, Alex may then come off of I.V. antibiotics, his I.V. lines can come out and he may feel a lot less constrained.

We seem to be in the right place for now. We have teams of professionals aligned and able to work with Alex when he is mentally physically and emotionally ready to cooperate.  It has been a long dark road behind us. He have a long hard road ahead but we see there is hope.