Weekly Essential: Summer DIY for Kids

Weekly Essential: Summer DIY for Kids: This summer my kids begged me not to put them in summer school. So I didn't, they have been really good about doing online work, reading...

Valentine's, Archery and Family!

Valentine's - Archery - Family

One of Patrick's first outings since he got home from hospital February 2015. 

In the last post I mentioned that I was going to pick up where we are today from where we were at this time last year! I anticipated writing more last year, but it just didn't happen.

Kent February 2016 Archery

Kent had archery again this year but it was really early so just the two of us went. Kent's school took first place and Kent took 3rd overall in his school. I am so proud of him.

 Patrick is still sleeping 10-11 hours a night and still not wanting to nap. He is a stinker, and he has been practicing baseball with Kent and his team. Patrick really enjoys spending time with the kids. It is so good to see because last year he really couldn't stand to be around them. It was just too stimulating and loud for him.

Lunch at Blue Boar Inn

Last year for Valentines I took Patrick to the Blue Boar Inn for lunch, where we got married. We looked around and he said he remembered taking photos. I am still not sure if that was from what I told him or if he really remembered. Either way, we had a wonderful lunch and it was so good to see him happy. It has been the only thing he has remembered about me.

This year for Valentines day, we took the kids out to dinner and we got fresh strawberries and chocolate and made chocolate covered strawberries. The kids had so much candy from school, they were good and they all wanted to go out to dinner so we did, and it was really nice. Patrick and I got foot reflexology done and it was a really great experience. 

Listening to 80's music

At this point last year we were trying everything along with Occupational, physical and speech therapy. Music therapy, Patrick remembers every song and the words and can sing along. He is amazing and the brain is so interesting. There is no brain injury the same, it is so sad and we are so lucky.

Patrick tried and still does acupuncture and Energy Kinesiology and we were meditating everyday. We stayed on his routine and he worked really hard. We are both so impatient. I think that is one thing we are suppose to learn through all of this is patients and to slow down and enjoy life.

Patrick snow shoeing 

Kellan and Patrick 2016 

I didn't like him to go outside much last year, it was winter and the last thing I wanted was him to slip on ice. He was still working on his balance. I did let him shovel snow on the warm days.

This year we have so much snow he gets to use the snow blower and he does a really good job. We are also able to snow shoe in our back yard.

Nana and Patrick Walking

Patrick Painting

It has been so cold for my mom that we take her to the Recreation Center in town to walk laps. Getting my mom and Patrick out is really important, especially this time of year with the cold, gloomy weather.

We have been coloring, crocheting, painting, playing ping pong ball, cleaning out the basement, getting rid of stuff, sharing essential oils, therapy and being a father. Not getting frustrated, staying positive, believing and having faith that he will heal, he is healing, he has come so far in the last year.

It does not seem like much but he is grateful to be alive! We are grateful he is alive. He is so loving and we love him so much!

Had enough and relaxing in the sun February 2015

Kollette and Patrick 

Staying Positive

Patrick working with his horse.

I was hoping to have everything up to date and to be more current on this blog, however it has been a challenging year so I thought I would pick up from where we are now and compare to where we were a year ago, since I didn't write as much as I anticipated last year.

A year ago at this time, Patrick had therapy three times a day. He struggled with so much, it was hard on all of us. He still struggles and he gets frustrated.

I can't believe it has been over a year! It went by so fast and it seems like a daze and now we live our life differently and have accepted that things are different. We can't go back and change what happened. We stay positive and know that something good will come of all of this.

As good as we are doing, it is hard, really hard. There is not a day that goes by where someone has an emotional day in the household. We are so grateful for essential oils, such an amazing tool that we use for emotional and physical health! It is good we have these emotional days. It is part of the healing and we have become more grateful and positive because of it, so that is good.

Patrick doing physical therapy

As the new year begins we are grateful for how far Patrick has come in his healing, as frustrated and impatient as we are, we know we are extremely blessed for how far he has come.

Even though we do not have to go to see a therapist anymore for therapy, he still has physical, occupational and speech therapy every day. There are days where we take breaks, but I have noticed if we take too long of a break, it does effect him.

Patrick has decided that he is no longer going to take naps. Well after about a month, the kids and I noticed that he still really needs a nap. So we compromised with him, he does not need to nap everyday and he does not need to nap for an hour. But there are times where he needs to nap.

He looks great and physically he is great. He was able to ski for the first time since the accident and he did great. I asked him if it was weird that he knew how to ski but he didn't remember skiing? He replied that it was easy. Every time the kids and I get frustrated, we stop and think about how frustrated Patrick must be. He has such a great attitude. He does have down days, but he has a lot of good cheer leaders.

I guess depression and head aches play a huge part in brain injuries, Patrick's doctor is impressed he has not had either.

Last year at this time he didn't know the kids names, my name, he got the animals confused, he didn't know what day, month or year it is. Today he knows what day it is, what month it is and what year it is. He knows are names and who we are and the animals. He is still learning new things every day.

I can't believe how much snow we have this year! We were blessed last year with very little which was great for us since the snowblower didn't work. That was one thing I made sure of this year is to have it ready to go, and boy am I happy about that.

Plus Patrick is able to use it and he loves being able to do stuff around the house. He is great helping me with chores, he does great when I give him a list of things to do. He has a really good routine, which is helpful.


Patrick is so positive and we have learned that staying positive is huge! When ever one of us gets down, there is always the rest of us to bring them back up. We are team Chambers and we stay positive and we know that we are all going through this together, how important it is to stay positive.

We are grateful that we get to spend more time together, that he is alive, that he is healing. The kids love that he is around all the time,  he is amazing and we love him so much.

Kollette and Patrick

Christmas 2014, Birthday and New Year's 2015

This was such a difficult time, but we were so blessed with so much support. We were on  a pretty good schedule which was important to help Patrick. Therapy three times a day took up a lot of time and there was not time for much else. We had to eat and Patrick takes a nap everyday.

It was exciting and fun getting ready for Christmas and sharing that with Patrick for the first time. It was his first Christmas. We did keep the lights and decorations on the low down so it wouldn't be to over stimulating for Patrick.

Our friend Greg helped us get a Christmas tree and helped me put it up. After we got it all decorated, we were down stairs and heard a huge thump as though something had fallen. It was the Christmas tree and the cat sitting right next to it. We got it all cleaned up and I tied the tree so it wouldn't fall again.

We were blessed with two secret Santa's and it was so much fun. One Santa brought us a gift every night for 12 nights, and boy they were good. I never caught them. However, a few nights before Christmas I was letting the dog out around 10pm and opened the door and there was someone in a white coat bent down so all I saw was there back and coat and a big box, I said "Oh I am sorry" and shut my door. My dog Alex was looking at me like, why didn't you let me out. So I let whoever I just scared at the door finish up, I took the dog downstairs and out back and waited a while.

When I went back up stairs, I checked the door and there was no big box. There was a Christmas tree dish with candy from the Secret Santa. Then I heard my phone beep, so I brought in the dish, closed the door and checked my phone. It was from secret Santa asking me to check my door. I text back, I already did and thank you so much. They said, no check it again, that was a different secret Santa. There was a huge big box with smoked Turkey inside, I could barely get it in the house, cookies and cash! Wow! I was shocked and amazed. I was so blessed and grateful. The support we have had from friends and neighbors has truly been amazing.

I still have no idea who the secret Santa's were, but were very blessed. The next day, we had plumbing problems so I ended up using the cash to fix the plumbing, but was so extremely blessed to have the cash to fix the problem. So Thank you Secret Santa!!! Who ever you are, thank you!

Christmas was amazing and we had a wonderful day. It was a little overwhelming for Patrick. I never had any idea how stimulating life is, until we have had to live in a low stimulation environment.

We have a sign on our front door that says, "DO NOT DISTURB Low stimulation environment, please call to make an appointment. I can't tell you how many people can't read. They knock, the dog barks and poor Patrick's brain is like what is going on, what is all that noise. Who is here? Or really, I have no idea what was going on in Patrick's brain, but the look on his face was frighting.

We made it through Christmas, next was Patrick's birthday. This was a lot for Patrick. After Christmas, we have our sons birthday, then Patrick's, then New Years! Everything was on the low down this year. It was okay and we had a great time and most important, time together.


New Years Eve was next and we have an annual New Years Eve get together with a few friends, that have come over for the past 6 years. We are lame, but we have fun. It is an early evening with good food to eat, then after we eat we do our color and number readings for the year, yes even the guys do it. Then at 8pm we do the countdown and then everyone goes home before 9pm. We have a great time and it is quick and everyone get's home safe and we all have a great happy New Years! It was the first time having people over and it was great. All though not everyone came this year, we had a great time. I think that it is hard on a lot of people what has happened to Patrick.

New Years Day! Happy 2015, today Patrick woke up and had his first memory recall. He came out of the bedroom and said to me I remember something. He remembered being with his mom at the grocery store in his home town when he was little. We were so excited and so happy! His memory is coming back. I know it is just one memory but it is something.

It gave us hope and belief to keep positive and keep believing he will get better.

It was a great start to the new year!


Kollette

Journal Entry December 8, 2014 and Where Patrick was at

Monday today we had speech therapy and I got up early and swam. His speech therapist said he was doing great. If Patrick cannot say what he wanted to say, he is describing it. Cheeseburger, what a plate was. A round, flat with edges. I never knew it was so hard and so bad until after he got out of rehab. I was never at the hospital early enough to see him do speech therapy.

It was hard to realize that he didn't know what things were visually, a simple thing like a giraffe.

Yes, we can do this. Every time I feel alone I remind myself that we are in this together. I am not alone unless I make myself lonely and believe me I have those moments.

I won't let that take up my whole day, that would be exhausting! When ever I feel down I cry, feel the emotion and then thank God for not taking him from me. How blessed we are. I know he will have a full recovery. I allow myself to get down scared, full of fear – where is that going to get me? I have to rise above and keep a positive attitude and have faith and believe and visualize and be grateful as if he has fully recovered.

I tell my kids to visualize daddy walking through the door as if nothing has changed and keep sending him love. I let fear in once in a while, we are human and it is OK to feel emotions but we also have to rise above with strength, find love and keep going. This is so hard but I love him so much!   

One of the ICU nurse said she would not have done what I did for Patrick, for her husband! What?  I would send love and still do everyday and send every cell in his body love and I surround him with the healing light of the divine, God and the angels. I am not alone, I ask for help and pray and remember to remember the love. Patrick loves me he always has and I know he wouldn't leave me. I just kept sending him love and still do. I am so grateful he is still here with us.

The next day we went to the heart doctor and also to see the nurses in the ICU. They were so surprised to see Patrick walking and talking they were just amazed it was a wonderful day.
His heart is doing great, the doctor showed us the whole surgery of putting the stent in. Wow, that was amazing. He didn't have much to say except that Patrick could  eat whatever he wanted and he would be fine for the next 10 years, Patrick was like, that it, that's all I get.

Where Patrick was at, at this point of his recovery

Patrick still had Occupational, Speech and Physical Therapy daily. He was relearning objects, re-learning everything. Even sayings, here are a few of our favorites.
"Rock them around" was meaning to stir something
"Whoopsy Woo" Remembers saying from child hood.
"Officers" what he called his therapist
"My Girls" His sisters
"Fine" When every you asked how he was or if he liked something
"So not Agreeable" Meaning Not acceptable
"Busted" If you yawned and got caught, it was time to take nap
"Rats" When he did something wrong he would say Rats and swing his arm, too funny.

Other things he would do.
He had a specific seat at the table, he never did before now. Patrick gets really upset and does to this day if someone else sit in his seat. He was able to write and spell but not read yet. He was starting to remember things like the day of the week, his birthday and where we live. He recognizes names and voices, but not faces or anything visually.
He was struggling with being a dad and the whole discipline thing. It was extremely hard. He called himself stupid and thought our kids were spoiled. I am not allowed to swear at all anymore, if you only knew how Patrick's mouth was before the heart attack.

Costco and the store were out of the question. Patrick would beg me to go to the store, we did a few times and now he would rather not go. Do you know how stimulating a store is, holy cow, now I get over stimulated. Still no TV or visitors.

He would look around the house, look in the garage at his motorcycles. He would check everything out, trying to figure it all out. It was like watching a baby learn new things. Today he still asks questions on what things are or how they work. We are so grateful that he can relearn things and retain it.

Thank you for letting me share our journey.

Kollette 

Next post, Christmas and New Years.

First Thanksgiving

 It was so nice to be home and out of the hospital. Thanksgiving was approaching and so was the visit from Patrick’s two older sisters. Patrick has 4 siblings, His oldest sister died in 2012 from a Massive Heart Attack at age 48. Then he has two other sisters, Kathleen and Pam, and his brother Duane.

Patrick’s parents do not fly and Duane was unable to come out due to work. It was hard going through all of this without his family being close.

His sisters arrived, it was so good to see them and Patrick was so happy. We were all happy to see each other. They came with gifts for the kids and love for their brother.

We were still on low stimulation lock down, no TV,  doing dishes or laundry or vacuuming. No anything that made noise.

When Patrick would go outside, he would ask me, “What is that noise?” I would ask him, what noise? That noise, you mean the dog barking.  Oh my goodness, the dog barking from across the neighborhood. I didn’t even notice it. He could hear everything and it was all new to him. It was very difficult to explain this to his sisters and have them be extra quiet.

The first 24 hours all they did was argue, as sisters do. I had to lay down the rules and I told them both to knock it off or I would take them back to the airport and they could go home. I had enough going on and didn’t need them fighting.

I felt bad, they didn’t know what to do to help and I had no idea which direction to go. I had been in the hospital with Patrick for two months, I have not been around my children, I didn’t know what to expect with Patrick. I didn't know what to expect from my children, but it all worked out just fine.

It was hard and I felt so bad for Patrick and how he must have felt. It was like having an adult infant around that could talk but not really communicate what he wanted at that point. Patrick didn’t know what things were, for example knife, fork, spoon, clouds, table, chair, bed, etc. Visually he didn’t know what things were and he is still learning today.  He remembers voices and that he loves us, our home is familiar and comfortable.

The good thing is that he is able to relearn everything and create new memories, and remember. He does not remember things visually to this day. But he remembers sounds and emotions. For example, he remembered that he loved us, he remembers the sounds of tools and how to use them, but visually he does not remember building our house or being a General Contractor or any of his clients, projects, getting married, having kids, but we are so grateful he remembers he loves us and our voices. He remembers music, he is amazing. As for his personality, it is there for sure. He tells me all the time he will be back. I tell him, you are right here. 

Patrick was able to write and spell, but he was not able to read at this time. We still had to work on his routine and bathroom items. I would have to watch him every minute the first few months he was home. He would get things confused like toothpaste and soap. He had such a great attitude and he has learned so much and he worked really hard. I can't even imagine, but he keeps fighting hard to get better. 

Thanksgiving Feast – Patrick’s first Thanksgiving

I was not going to do anything for Thanksgiving, but then realized that Patrick didn’t remember the holidays’ or Thanksgiving. This was his first one, so we went all out.

What a wonderful day. Kathy and I went to the store, fed the kids and Pam, mom and Patrick lunch and then we started cooking the Thanksgiving Feast. We had so much fun, Kathy and I cooked all day, everything turned out perfect. Patrick said it was the most wonderful meal he has ever had.

Saturday after Thanksgiving – Patrick seems to be remembering more today, he had a high school memory come back. He remembers emotions and he knows what irritates him. I am getting really good at reading him and knowing when he has had enough. He is like a child and pushes himself, until he is so tired and agitated. He needs his rest so his brain can heal. 

We had speech therapy the next day for Patrick and his therapist said that his speech was a lot better.

We had a wonderful Thanksgiving.

I asked Patrick a few days later if he wanted anything from the store that he had eaten. He didn't know what it was called. I asked him to describe it to me. He sad it was white and creamy. Whipped cream? He said yes, yum. We make it home made. 

Coming up a Journal Entry, Christmas, Birthday and New Year!

Kollette Chambers

Coming Home

It it all such a blur, the two months in the hospital. I fought the doctors to get him home, the rehabilitation center was horrible. The doctors and therapist were great but the nursing staff was not. If you ever have a loved one in the hospital, put yourself aside and focus on your loved and be the best health advocate you can. Get to know the nurses, make sure they know you and they know that you are watching and making sure your loved one is getting the care they deserve. Ask lots of questions and make sure you look at there chart everyday!

Patrick was not getting any sleep and they wanted to keep him a week longer than expected. I was so frustrated, he was not sleeping and they would have him do all this therapy, then he would sleep for a few hours and be up all night. The brain needs sleep in order to heal. So I had the nurses keep a sleeping log when I was not there so I could show the doctors he was not sleeping. Now Patrick sleeps 10-12 hours every night and has a 1-2 hour nap everyday.

There were so many people in rehab and I never saw any friends or family come much to visit other patients. The hospital is a depressing place, yes, but you may find yourself there someday and want good care and family to be close by. This is something we do not think about on a daily basis, then it happens. We are never prepared.

I had to stay with Patrick for two days in the Transition apartment before he was able to come home to make sure I could handle everything. This was the first time Patrick and I have been alone without kids and it was in the hospital (too funny). We did great in the transition apartment and he got the okay to come home. He wanted to come home so bad. When I was not at the hospital with him, he would roam the halls with his aid looking for me.

We had to take him out in public with the therapist the last day of the transition apartment to make sure he did okay in a car and out in public. He did great.

The ride home went smoothly, but once at home, I could not leave Patrick alone for the first few weeks. It was a huge transition for him to come home, he didn't remember home or even what city it was in. He built our home and he does not remember it. I was so hoping he would remember everything once we got home. However, the surroundings were familiar to him.

Patrick came home November 14, 2014. Just in time for the Holidays (that he does not remember or know what any holidays are). Patrick had to relearn just about everything. He does not remember anything visually before his heart attack. However he has had a few memory recalls since, very few but they are coming back. He remembers emotions and sounds. So if you see him don't be afraid to say hello, he will probably recognize you by your voice.

I had a difficult time being out in public with him and running into people at first, I didn't know what to do or say. How do you explain a brain injury and then when you do, they don't understand. It is okay, the doctors don't understand or know the outcome either. The brain just needs time to heal.

We both have gotten better about dealing with it now, Patrick has gotten so much better being out and about. When he first got home, we lived in a very quiet and non stimulating environment. Things like the washing machine and dishwasher were stimulating or the dog barking in the next neighborhood. He heard everything. It is like having a newborn in an adult body that can communicate with you. Most everything was "Fine". Any question you asked Patrick, he would answer, "Fine".

Patrick was unable to read when he got home, but he was able to write and spell. The brain is so interesting.

The most important thing was to get Patrick on a routine, which was extremely helpful. As he relearns, he is able to do things on his own after doing it several times.

For Patrick's Daily Routine {Click Here}

The days went by so fast, he had Occupational, Speech and Physical Therapy daily. It was a lot to get him to Salt Lake City (50 miles away). The drive was too stimulating. We were lucky enough when therapy ran out on our insurance to get a grant to continue Speech and Occupational therapy. We are now able to do all three from home, which has been amazing.

When Patrick first got home, he thought he was 22 years old and became very depressed when he found out he was 43 years old. Then he kept calling himself stupid for everything he did. It was a wild roller coaster ride for the first few months. I would forget that he didn't know what anything was visually and I tried to remember and teach him what things were. He would get frustrated if he didn't know what I was talking about. It has gotten better but he is still learning.

I gave him a Dove Chocolate a couple of weeks after being home and I just assumed that he knew what to do with it, so I turned around after I handed it to him and I read mine, then threw it away. I turned back to him and asked him, what did his say? (Dove Chocolates have little sayings in the wrappers). He pressed his lips together and grinned. I put my hand up and said to him, spit it out. Yup he had put the whole chocolate in his mouth, wrapper and all. We laughed and still laugh about that today.

He had only been home two weeks and we were getting a visit from his sisters that live in New Hampshire. I was happy to have family around as my dad had left as soon as Patrick got out of the ICU. I had great neighbors and friends, but it is still nice to have family close and around. Especially in this situation.

We had to be super quiet at first, no tv, no visitors, no phone calls, no talking on the phone, no appliances going, blinds shut. It was so quiet and actually nice. I learned how much our brains are stimulated. Just watching Patrick and knowing him so well and learning how to read him and know the signs when he was getting tired.

It was months before going to the store and still today I try to avoid it with him. I would take him to drop the kids off at school and he would get upset at all of the kids riding their bikes and scooters without helmets and he would get agitated, so I quit taking him with me to drop the kids off and timed it where it was his nap time when I would go pick them up from school. Today he does much better in public and when people are not wearing helmets.

 It was a balance keeping it all together and still is. I stay positive and things improved daily. It is hard, I did just want to break down. But I couldn't I had 5 people fully depending on me. I will do my best and preserver.

The first few weeks we worked on getting Patrick on a routine, which really helped. Then we awaited the visit from his sisters. I was not going to do anything for Thanksgiving when I realized that this would be Patrick's first Thanksgiving that he would remember so we had to go all out.

Challenges I faced; were making decisions on my own, the children and how they were dealing with it all, all the canned lights in the hallway were out, all the lights in the bedroom were out, I cried over split milk, the kitchen sink breaking and flooding the kitchen floor over and over. Receiving help, trying to bring some normal back into our lives. Remembering to teach Patrick. The challenges seemed so big at the time. Now that months have gone by, I know that this is happening for a reason and I have learned so much. Most of all I have learned how grateful I am for Patrick and all that he used to do for me and the kids.

Coming up next the Twisted Sisters Visit and Thanksgiving.

Kollette Chambers

Recommend Reads - Living with Brain Injury a Guide for patients and families and Mind Storm.