2021 05 23 C4C Epilepsy Ride 4/4 Farmington Rail Trail

2021 05 22 C4C Epilepsy Ride 3/4 Westport.

2021 05 16 Epilepsy Ride 2/4 Branford

2021-05 -15 C4C Epilepsy Ride 1/4 Orange

C4C 2021 Team Jersey

 2021 Season Training Jersey.

This year 2021 Closer to Free Team name will be "C4C Team Tirozzi".  The team training jersey will represent its training.

Mary T is a long time team mate that has consistently cycled with passion to raise awareness and funding for various causes.  Always the first in line to sign up for a training ride or cycling event even though she wasnt really the first one to cross the finish line (sorry Mary...personal joke). Mary T.  has proven to be the most improved in the past several years and is now considered more of a leader than a follower. Mary is going through therapies right now and will treat them as she treated the training rides. The rides were tough, she started off slow and then showed us all that with time she could be the champ! 

Each of the C4C members are motivators in thier own way, from this year forward we will dedicate the jersey and the cause to one member. 2019 was Team Alex and his fight with Epilepsy 2020 Covid shut us down. 2021 Team Tirozzi is going to make so many more people Closer to Free from cancer and Mary will show us how it is done. We all look forward to a strong 2021 cycling season.

The 2021 jersey is in final design stage.  We did not solicit sponsors, therefore the jersey will be at cost through a page on the hincapie website. There will be this years jerseys, team bib shorts, team arm warmers etc. We will post purchase information as soon as we receive it. 

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.

2020 10 24 Rehab

2020 10 24 Saturday. 

This was first day of rehabilitation. We were able to meet the weekend crew and get a little familiar with a few doctors, nurses, and therapists. We were able to start getting a little familiar with what to expect and what is expected of us.  As of this day one we have a feeling that this team work is going to work.

This morning during parent speach session, Mom was able to have him say 3 words. While reading a book in bed he said "anguin" for penguin. He said "roar" for the lion. He said "efant" for elephant.

During the day we met several therapists and then Alex and I were able to work toward a goal.

We have left a long road behind us. The road was bumpy, broken, dark, foggy, and just outright miserable at times. We went through several deep, dark tunnels where we definitely didnt see the light at the end of the tunnel. When in those dark tunnels, we were on a track..a shitty track..we couldnt see the light...the tracks jerked us from side to side and almost tossed us all off several times. We stayed on the track with faith that because the track was laid...there had to at some point be a light and an end to that damned dark tunnel. We know that we still have a long road ahead of us. There are steps to be taken and work to be done and we are ready

2020 10 23 rehab

 2020 10 23 Friday

Morning Boston childrens Hospital

Afternoon Spaulding Rehabilitation

Alex has transitioned again between Boston Childrens Hospital and a rehabilitation facility.

We are on day seventy something and have a long road ahead of us for recovery. We continue to adjust medicines and feeding in order to get him up early and keep him awake long enough to participate in therapy sessions.

As of this morning Alex is able to sit for a while unassisted. If he sits for to long, he loses strength and leans over. He us able to stand up about ten times for 10 second each time three times a day. After the stands he is exhausted and needs a break. He is able to show signs that he will be able to grab and release objects. He hasn't spoken other than a few times of saying "E Pa" three times.  We are in rehabilitation and we will work on adjusting seizure meds ( he is currently have 7 to 12 a day). We work on preparing him to get back to sitting, standing, walking, talking.  He isn't yet focused, we don't know what he sees. He turns his head sometimes, but not certain of how clear his vision is. Every medicine that he is on have side effects. Many of the medicines cause issue to his vision. We don't know if his vision is impaired from surgery, trauma, stroke, infection, or medicine, right now only time and medicinal adjustments will help answer those questions.

We left the Boston Childrens Hospital behind us, we will return for follow up exams in the next couple of weeks before we know how to proceed with infection and seizure medications. Today we are in a rehab facility, this is where we need to get our walk, talk and grip on... We have a long road....but this looks like the place to be!

Writing from the first night.

I lay on a couch about ten feet from my sleeping child.  It is something after ten and I can hear the quiet ticking of the wall clock about fifteen feet away. I have a ringing in my ears from the past seventy something days of hospital noise, this silence allows me to realize that there is a ringing that I didnt know existed. Its almost like that sound we hear after a rock concert. Well, it is not quite that....but there is ringing. I am ten feet away. I can see my son, nothing blocks my vision, no wires, no IV lines, no respirator, no eeg lines, no machines. It is quiet. I can hear my son breathing. I can hear him breathing...I haven't heard that sound for over seventy days. In this recent past, it has been mechanical systems, machines, pumps, alarms, dings, beeps, etc.

In the present, It is quiet, It is peaceful, this looks and sounds like the right place for our recovery.

There are only 12 kids on this floor in therapy at a time. It is very quiet during sleep time and it is pretty busy during the hours where kids do thier therapies.

Alexs room overlooks the Charlestown Naval Yard and the Boston Harbor.

He is able to watch a lot of boats coming in and out, we see the tug boats in and out of port but can not hear a thing.

Alexs room door is wide open and there have been no sounds from the hall in over 20 minutes. There have been no alarms, no dings, no codes called over the intercoms. There is no evidence of nurse chatter and no consistent shuffling of feet nor babies crying.  If the sounds exist, we have not heard them.

Covid rules have me quarantined with Alex. We are here and we will be getting to work. For sanity we have a wonderful view of the harbor and the peacefulness of theses still waters. We watch as large boats drift in and out. We watch as smaller boats make the ripples that disrupt the peaceful waters. Below our room is a playground. We watch the kids play from our window. It looks fun from behind this window that ia 8 floors up. From behind this window we look out and pray for the day that we may be out there looking in.

2020 10 19

2020 10 19 Day 76

"The habit of persistence is the habit of victory" anonymous.

We keep at it, we do not give up. Things aren't easy today....but we believe that what we do today will give us a better, stronger tomorrow.

.
"Don't count the days....make the days count." Muhammad Ali

Ive been keeping track of the daily activity while noting the progress, is that wrong?. We need to get that grip, focus on the work and get into making these days count..every hour, every day is critical and we need to focus on it all. We have meds, feeds and rehab and we need to make them all work. We have a daily to do list written with dry erase board marker on brown paper towels.  It is on the door, we cant miss it. Is that considered making the days count?

2020 10 19 Alex Status

2020 10 19 Day 76

We are currently on day seventy something and haven't left the hospital for the final rehabilitation facility yet. We left our home, families, friends, business, work and chores behind seventy something days ago. 

We miss being home and we truly miss our oldest son beyond words. I haven't written about my oldest son and how much I miss him, the hikes, the walk and talks, the fishing, the bbq on the deck, the frisbee tosses, the silly teasing that we throw at each other etc. Its been seventy something days of no old kid.  He is a big boy keeping the grandparents and house in check. I respect his privacy and don't write about him here as much as I do in my daily journal. We are seventy something days in a hospital making the attempt to heal and strengthen his younger brother. Healing and strengthening his younger brother  is a tough task, especially when everything else going on in the world around us keeps us from being together as a family or even seeing the family.

We are still at Boston Childrens. On a good note, we are daily increasing in strength and working toward a better Alex. On a good note Alex is stable. On a bad note he is not stable enough to go far, we have I.V. meds for another four or five weeks. We need to be close enough to this hospital as his infections are not yet cleared and fevers may arise at any time. We will need another mri in four weeks and maybe an eeg as soon as five or six weeks. We need to travel to and from but Alex is still imobile which makes travel so much more difficult.

Alex is currently stable enough to move to the rehabilitation facility by ambulance where they can focus on getting him to sit, stand, walk, talk. He may be ready but his health insurance and the local rehabilitation facility do not agree with each other. They currently toss red tape around at a critical time where a child has need for prime time rehabilitation. This kid has gone through a lot. A major brain surgery, a stroke during that occured during, a life saving second surgery, a life saving third surgery, a reconstruction surgery, a trial rehabilitation at a local rehabilitation facility and an emergency revisit to Boston Childrens to treat two infections. The infection treatment is a five or six week dose via I.V..

The teams here at Boston Childrens have worked feverishly toward stabilizing Alex, they are adjusting Alexs medications so that he can work with therapy teams during the day.  The therapy teams here are awesome, but they tell us that we should move toward rehabilitation facilities that provide many more hours, more focus on rehabilitation recovery etc. We sit here now greatful to be stable, but upset that red tape and insurance companies hold a child in a place that he should be moving on from.

We want nothing more than to get our son better so that we can get home. It has been over seventy something days that we have been away from our normal and we haven't yet started a rehab that may take two months. Insurance company says it may take four to six weeks to come to an agreement between insurance and rehabilitation facility...how can this be???? These two have been in the process for two weeks already, how can this be a thing??? There are facilities, there are insurance companies, how can communication in 2020 require four to six weeks. In four to six weeks one can build a facility. I am not sure who else to get involved in this. If anyone has any ideas please comment below.

We have visited this Boston Hospital many many times over the past several years. We have come here for one hour doctor visits as well as two day three day or four day long visits to do eeg and video monitored testing. We have had times when we came up and stayed at a hotel for the one night before appointment because we had the early 8am or 9am appointment. We are a three hour drive with normal traffic and getting Alex up and out our door from a deep sleep is a very difficult task. To ease Alex's morning frustrations, we have come the night before an appointment. For longer stays, we have stayed at family housing where we have met other parents who told of thier long stays. As I heard the stories then, I felt so sorry for the child, the parents and the families. I could not imagine a week stay for us, yet we heard storys of people who moved to town to stay for several months.  Never, never, ever did I foresee that Alex and our family would be in that similar situation. 

I never guessed that a thin matress on a window sill or a hard surfaced plastic pull out couch would be my restful sleep space for months. I never knew how greatfull I would be for this here plastic pull out. A couple of weeks ago I was sitting on an ant infested half rotted wood wall, in the rain, wishing I could be by my kids side...so im lovin this here couch. Never did I know how important the simple, weak family room coffee, single pack cheerios, single wrapped graham crackers, raisin bread and single serving peanut butter pods would be. As a caregiving parent, things change. Almost everything changes. While I lay on his hospital bed by his side, he sleeps and I stare at the hospital room walls. I listen to youtube prayers while praying for a kid to focus, wake, talk, sit, stand, walk, laugh....I pray and I am reminded of how much we truly take for granted. We all take simple tasks like sitting, standing, laughing for granted.  I wonder if Alex is in pain when he sits or stands.  He can't speak so I don't know. We don't know.

We work with so many teams to try to figure this all out. It is a challenge, But we are making progress. This past weekend he sat on his own at the edge of the bed for several minutes. He was able to stand with assistance seven or eight times for three times a day. I am determined to get him to sit, stand, walk and use arms and legs. Mom is determined to get him to speak and focus on people, toys, books, etc.

We work with several teams, he is awake, as his parents we are learning about him as he wakes. Simple things take so long, simple things that we took for granted months ago are now so important and are the focus of our prayers today. How many mornings should I have thanked God for currently having the ability to sit and stand. I should have thanked God for having given us the ability to walk and talk. Kids jump and play right?  Well... as I walk through these hospital halls, I can sense the frustration of children and parents of children who can not. How many prays of desperation have these walls seen and heard over the years?

No matter how much someone tries to plan things out, things always seem to go a slightly different direction.  You can write a to do list daily, yet during your day something will go sideways and you will find that other things got done, but your list was not completed and sometimes not even touched.

Our to do list was try every medication and directive before surgery. We had surgery to correct something and things went sideways. Seventy something days later I sit bedside as he lays in bed. We have been away from our family and our normal for way to long.

After what we have been through and after the horrible, horrible, horrible words that doctors spoke in the extremely critical times...I am greatful that I am still here sitting bedside with him and that he is able to somewhat respond. Its been seventy something days, we are here, we are safe and surrounded by professionals, but we parents are tired and Alex appears ready to move along and get to rehabilitation.

Lord we pray for the right place and the right people at the right time...Lets get to moving forward however you see fit. Lord give me the strength to see this all through. Let me help without getting in the way. Let us give this kid back his legs arms and voice.  Lord the end goal here is to get Alex back to him.

2020 10 17 photos

2020 10 17

Photos of last 3 days.

Alex is a little more awake. Doctors have taken away medications that have allowed him the opportunity to be more awake. In being more awake he is starting to make attempts at eye focus, he is making attempts at standing and is sitting a little stronger for longer periods of time.  He is smiling more now that he has a wheel chair and the ability to leave the room. He enjoys seeing people im the hall. He reaches out to almost every nurse as if he wants to hold thier hand along the walk.  He loves loves loves holding mommy's hand as he is wheeled down the hallway.

Daily Alex and Dad selfie in empty hall with covid mask. We wanted to go up to the roof top garden but it was too sunny and breezy.

During our wheel chair stroll we saw these dragon wings painted on the wall. We had to stop and show our wings!!!!

Alex sat up in bed to give mom a hug.

2 Kings 20:5 "This is what the Lord, the God of your father David says; I have heard your prayer and have seen your tears: I will heal you. On the third day from now you will go up to the temple of the Lord.  I will add fifteen years to your life.

Alex is in good spirits. He is having a very hard time, but smiles and plows through the day with smiles along the way.

Sitting at the edge of the bed and finding his balance was very difficult on this past Monday and Tuesday. With hard work, determination and dedication Alex sat up about 7x Saturday unsupported for a few minutes at a time.

Psalm 6:2 have mercy on me lord, for I am faint; heal me Lord, for my bones are in agony.

No one would ever imagine how difficult it could be to sit up, unsupported at the edge of the bed.

"We need to get through this kid, you are doing awesome...this is really really hard but you are doing awesome!!!."

Little by little, one sitting at a time we will get there.

Isaiah 41:10 "so do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you, I will hold you up with my right hand."

Today (Saturday) Alex stood up at the bedside with assistance. He made several attempts at standing and rocking me back and forth while hugging me. He stood about 10x...6 of them were pretty strong.