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Wednesday, March 27, 2024

General Family Update

I realized that I have recently given you dear readers a general health update but I failed to mention my family! I want to rectify that.

First off, Eliana is 3 going on 30 haha. She is ready to be a teenager even though I am not ready yet. She is growing like a weed and recently got her own princess bed. No more kicking me at night.

Additionally, she loves her school, Teacher and classmates. This is great news because she will be there until she turns 18 haha.

She has been a great help to me with my limited mobility. She is kind and patient and she treats me like a normal bodied person. She throws her tantrums like any typical 3 year old but overall I love my daughter to pieces. 

She is completely spoiled rotten by her grandparents as she is the only biological grand child on either side. 

I am extremely lucky to have great in laws who help us anytime we need it and they have put up with a lot these past 4 years with my health stuff. 

My parents have also been amazing even though we don't get to see them as much as I would like due to the distance. They recently retired and moved to a lakeside cabin in the middle of nowhere. The perfect place for them to spend their retirement. They are living close to some friends so I am happy for them. 

Jenny is working hard and doing well as can be expected under the circumstances. She has put up with a lot over the past 4 years and I am luckier than I deserve to still have her by my side. She took in sickness and in health literally. There is no one who I would rather have by my side. I can't wait for the day I return to normal life and I can finally be the husband and father that I want to be, living a normal life. 

My brother's are also doing well and staying busy. I have been lucky to have their support. My grandmother (my dad's mom) is 88 and still going strong. I hope for a lot longer. She remembers all of the important dates in our lives and luckily we will get home this summer with Eliana to see her. She loves all of her kids, grand kids and great grand kids. We are lucky to have her.

I guess that is all for now. Take care, Tyler 

Saturday, March 23, 2024

General health update

I figured it was time I gave everyone a general update on my health and progress. I will start by taking you through my health issues then I will share my progress with you. 

So it all started 4 years ago. I had recently arrived to Spain directly from China. Shortly after that, the valve that drains my excess brain fluid into my stomach failed. It had lasted 35 years but no longer.

I started having headaches and vomiting due to the increasing pressure on my brain. So I went to the hospital here in Pamplona. They initially tried to repair my old valve but it was too old to be saved.

So I ended up having 6 brain surgeries in Pamplona. But none were successful. I had one of my 4 ventricles in my brain block off. This necessitated a surgery to implant a stent on my brain to try and restore flow to the ventricle that blocked off. 

Due to the blocked ventricle, my left eye went crooked and I lost all my peripheral vision in the left eye. I was also on a total liquid diet at the time due to my facial paralysis (due to my shunt failure) I ended up losing weight until I was down to 112 lbs/52 kg.

The stent surgery failed. It was at this time they transferred me to Barcelona where they had more shunt experience. It was there that they removed all the previous hardware and implemented a second shunt. 

These two shunts have a technology that allows them to talk to each other so they avoid the previous problem I had with one shunt working and the other not. So now they work together instead of fighting against each other. 

I ended up having 6 additional brain surgeries in Barcelona bringing my total brain surgeries to 12. If you include my surgeries as I child I have now had 29 total surgeries.

After 6 months in and out of the hospital I was finally released to go home. I started going to speech therapy (my speech has been affected by the facial paralysis) and physical therapy 4 days a week trying to regain my balance. I can walk but not well. I use a walker or wheelchair to get around. But I am not paralyzed thank God.

I need thickener added to my liquids due to my swallowing being affected. But I can eat normally. No more liquid diet!

So none of this is ideal, I have lost a lot of my independence but I can shower normally and dress myself and do most things. So my condition is not perfect but it could be much worse. I am a lucky guy and I know with time and effort I will only continue to improve not get steadily worse. 

I have one more operation to go to correct my crooked left eye but it should be a piece of cake compared to what I have already been through. I have also regained all of the weight I lost in the hospital. 

I am also very lucky that Spain has good socialized medicine so I don't have to spend the rest of my life paying off medical bills. 

The most frustrating thing by far about my current condition is that my mind is healing faster than my body is. So, sometimes my brain will send a simple command to my body and it will not respond. It is frustrating having to relearn to walk and talk. They are simple things that I took for granted. But no longer. Your brain controls a ton of things that you do not even think about until you lose the ability to do them. I look forward to the day I will be independent again. 

So overall, I am happy and doing well. I am lucky to have supportive family and friends. Thank you all. I am also thankful every day for Jenny and Eliana. I love them both. 

Tuesday, March 05, 2024

March update

I figured that I would blog and let all of my dear readers know how I am doing. Health wise I am still stable and staying out of the hospital thank God. I still struggle with balance issues so I rely on a wheelchair or walker to get around. Everything else is coming together slowly but surely. My speech is still not perfect but it is improving with daily practice.

Eliana is growing like a weed and Jenny is working hard and treating me better than I deserve. I am a lucky guy. So overall, things are not perfect but they are headed in the right direction. 

Til next time, Tyler