2020 09 24 Alex Spoke!

On Wednesday Alex spoke...who would have ever guessed what his first words would be. All my life Ive heard the words, shared them, used them in jokes or fugure of speech.  Alex and I goof around, mom hated it, but now fell in love with it.  Figo just reminded me via The portuguese kids videos and coincidentally on the same day, the pork-chop in Alex that wore off from Dad came out in a time that was so desperately necessary.

 2020 09 19 Saturday

There were no scheduled therapies today. Last week while I was away for Ride Closer to Free with Jordan, the Weekend Physical Therapist didn't disconnect Alexs' G and J tube and they both got caught on something and got pulled out of his body. Alex then required emergency surgery to have the g tube replaced and the J tube rethreaded with use of xray technology in the operating room. I believe that this weekend the weekend PT was staying away from Alex and I and rightfully so.

Today Alex was awake alert and enthusiastic. We had to do something, so we worked on our range of motion and stretching.  By the afternoon I gathered up enough courage and energy to sit Alex up alongside his bed. Alex gave me that look of..."Dad...you better know what the F@#& your doing". I hadn't even yet grabbed for his hand and he already had it in the air and his right leg up as if he were trying to do it all himself.   Several times I brought him up into the seated position. He wanted to get up, but once up he was up he had that look in his eyes as if he were in pain. His body swayed from side to side when his head was up and then when tired his chin was buried in his chest. He sat and was able to tolerate for a minute or two before he buried his chin in his chest. I then lay him down for a break. We repeated this several times with hopes of strengthening his core and neck.

2020 09 20 Sunday

Today Alex was alert. Awake and was able to sit bedside with my assistance. His torso and core was a little stronger than yesterdays attempts. He was lifting his head up on command.  He sat bedside, his legs dangling off of the side of the bed and his feet dangling. He kicked hard with his right but nothing from his left. It felt as though he was using his right leg for balance or to make an attempt at moving. His head was not stable. He looked around, opened his mouth and moved his eyes as if he was getting some type of stimulation with all if this movement. He is moving his right arm a lot. If the rattle is in his hand he is shaking it like crazy. He listens to command. If I tell him to stop, he does. As he sits bedside I am on my knees in front of him. I have my hands at his sides and I support his waste from going to far to the left, right, front or back. Today is Sunday, I took it upon myself to give it a go without the physical therapist. The therapist requires two professionals, a nurse, a helmut, a big chair and a lot of pillows.

Bedside it is Dad and Alex. We sit, we sway, we listen to music. We sway a little to left and right (supported) and we work our core.  Alex has not done much in the past forty something days so this is a big step.  His head moves left to right, front to back. He works real hard to keep his head up and then gravity brings his chin right back down into his chest. I give him a few minutes and then tell him to lift his head and he does. When he lifts his head, I can almost feel his sense of accomplishment. I tell him that I am so proud of him and I can see right away that he lifts his head higher, his shoulders straighter and the tallness of his core reduces the load on my two hands that support his waist. He seems to be able to hold it for about 2 minutes before gravity drops his chin right back into his chest again.  He rocks his head from left to right, his chin buried in his chest, his eyes look upward, he isn't looking straight at me, but it appears as though he is looking up and waiting for my direction or my praise.  I tell him..."ok buddy, one more time...chin up lets count to 10..."and he does. He lifts his head up and begins that stimming thing again.

He is working hard. He is trying harder. He is definitely trying to focus, but he us having trouble.

When his head is up, his eyes are heavy, he looks like and reminds me of the drunken state Party nights when I was sober but everyone around me was blitzed. The heavy eyes, the attempt to focus but the see right past people and weird breathing and drooling that came with it.  Alex is trying, but the meds that are helping him are also kicking his ass.

Even though the process is slow, these past couple days have been better than any of the other forty something. He is awake. He is alert. He is draining my energy and I love it.  Sitting and core strength are a big step in his recovery.  I see that as we work the core, he is begining to come out if his shell. These past couple of days have been better than the past forty something.

2020 09 21 Monday

Today Alex goes for surgery. We sit up bedside like we did yesterday right now so that mom can see the progress that we are making. He sits bedside, I support his trunk, he lifts his head higher and taller today than he did Saturday and Sunday. I am pleased to see that he is gaining strength. We have a long way to go, but we are definitely showing slow progress. Mom stands behind me and calls for Alex. He lifts his head and looks in that direction but does not yet focus. She tries hard to get his attention and he tries hard to give it. We will get there, we are not there yet but we will het there.

2020 09 22 Tuesday

No sleep, had surgery yesterday, today was a big blurr, recovery day.

Back in ICU. It is cold, loud, the nurses poke and check Q1 which means every hour. No break, no rest, they need to assure that all is well and that they do not miss any issue.

All day long the teams teetered on whether ir not we were to leave ICU to go to the floor. All day long we were given conflicting information. At 2am we were packing up to move to the floor.

2020 09 23 Wednesday

Today alex spoke!!!

Mom was trying very hard to get Alexs' attention. Alex was not able to focus nor make eye contact yet, but he was trying.  I went on with my type of talkin "you need to wait...like a hunter you need to wait all day for that very small moment in time that will save your life. The moment that will provide you with the food that you need as the nutrition, energy, etc." Mom responded with something blah blah blah tired, blah blah blah back hurts. I responded with " It is like fishing...you wait all day for the fish to bite, they will come, the school will pass, you need to be ready and time it correctly. When the time is right....things happen...you just have to wait, you need to be patient but most of all you need to pay attention and not let your guard down."  I relate this right back to fishing. Anyone can fish all day long but only the one who studies the tide or river flow, the temperature, the sunrise, the sunset  the barometric pressures and moons can have better success rate.  I can usually work with Alex and succeed but I know that he wont do anything when tired, sleepy, post ictal or heavily medicated. I look for his body language, I wait for his demeanor, his energy, his sign to me that he is ready.  It doesnt come often but like the sportsman I wait, I am patient and take full advantage when that time comes.

I was sitting bedside singing one of Jorge Ferrieras' songs for the umpeenth time. The song I was singing was one that mom hated, but a song that Alex and I love. I drive Alex around town, we have the top down, windows open and the radio blaring...We bob our heads and repeat the phrase "E Pa" and "Vira Maria". Alex responds to it, we make noise, he is engaged and we pass our time searching for stop signs, counting fire hydrants and reprating the phrases.  While on the hospital bed we were listening to the music via youtube on the tv.  As we listened I said "E Pa" real loud along with the beat of the song...I looked down to Alex and asked him "Alex YOU say it". You wouldnt believe my surprise when I looked down toward his lips and saw the movement and heard the soft sound of his breath mimicking the words "E PA"!!!!!!. I damned near fell right off the bedside.  I called Bela right over as I said..."This is exactly what I am talking about..."Alex....say "E Pa"" and in a silent voice he breathed out the words yet again. They were sift but they were clear, they were meaningful and they were on command!!!!!. I was so happy. Bela was so happy...It couldnt have come at a better moment in following the lecture that I was preaching...lol. Bela hated the song, she hated that we sang it over and over....today...at this moment what she hated then was her favorite now!.