Sunday, January 31, 2016

Jeremy Update

Not much to report today. Yesterday Jeremy was quite responsive and acknowledged when people were talking by looking at them. Today he wasn't responsive and didn't look at us or make eye contact much at all. He was, however, moving his body parts and facial muscles a lot more. He was turning his head from one side to the other, arching his back, moving his legs, and lifting his arms. We did the moves the physical therapist showed us and he grimaced and showed his displeasure. His nurse suggested he was working with a different part of his brain today and that was why we were seeing different behaviors. I noticed when he was sleeping he would make faces almost as though he was dreaming. Thankfully even though he wasn't responsive with his eyes or his face, he still enjoyed holding hands and even squeezed harder today than he had yesterday. The plan is for him to be moved to an acute care facility tomorrow as he is stable enough that he no longer needs the 2:1 patient to nurse ratio from the ICU. No confirmation has been made that he will actually move as we are waiting for the move to be approved by insurance, so we will see what happens tomorrow.
This picture popped up on my timehop from Jeremy and dad's birthday 10 years ago.

Saturday, January 30, 2016

Jeremy Update

Today was Jeremy and my dad's birthday. Carter picked out cupcakes and balloons to take up to Jeremy's room and I pulled out a birthday banner to hang up. We shared cupcakes with his nurses and the staff who have helped with his recovery. We are so grateful for the part each of them have played in him making it to his 32nd birthday! Thomas and my mom both played him lots of Bob Dylan, his favorite musician, throughout the day. When I visited him in the afternoon I noticed he is moving his eyebrows more and when he coughs he now opens his mouth as though he is attempting to push air through his mouth rather than his trach. He really likes to have his hand held and I love that. When he raised a hand I would hold it. When he'd fall asleep I'd let go so when he woke up he'd put his hand up again. When I let go of his hand to leave he squeezed onto it and didn't want me to let go. Tonight when I arrived to spend the night with him he was looking over at the balloons we got for him. When I held his hand while he was awake he would squeeze my hand and if I started to pull my hand out he would squeeze harder. In my mind it's one bit of comfort when his entire body is in pain. I wish I could do more but it's nice knowing I can now do something that he enjoys. Dad's birthday celebration just wasn't the same without Jeremy. I missed hearing the exchange of dad asking what his favorite birthday present ever was and Jeremy excitedly saying, "Me!" We've decided we will be celebrating mom, dad, and Jeremy's half birthdays in July when they can all enjoy it. I even found a 1/2 candle at Target which will be perfect for the celebrations. I look forward to hearing Jeremy's voice then and watching him blow out his candles! Until then we are celebrating his life and continued journey every single day. It is such a gift to have him still here with us and we are so grateful!
Jeremy's balloons Carter picked out for him.
Jeremy's candles ready for this summer.

Friday, January 29, 2016

I Love...

Jeremy Update:

Today was an exciting day. Jeremy received physical therapy and was able to push his hand into the therapist's hand on command. He also turned to look at my dad on command and squeezed my mom's hand on command. Those were the first times he was able to do something when he was asked. Ty took the day off work to help out with my dad's surgery so I got the chance to visit Jeremy for about an hour and a half. It was my first visit of the week that was longer than 30 minutes and I sure needed it! He was the most alert I had ever seen him. While I was there he moved his arms, grimaced, shrugged his shoulders, and spent some time sitting in a chair. When he coughs he moves his lips like he wants to push air through his lips rather than through the trach tube. He is focusing with his eyes even better and tracks things much better. When I talked he looked at me and when I walked from one side of his bed to the other he tracked me. He watched videos of Carter and intently stared at my phone. I haven't seen him smile since that first day he did it, so I'm thinking he did really smile at me. Something I've noticed when I'm visiting at the same time as my mom is that he is always looking at her, looking for her, and watching her. When he'd fall asleep we'd both sit down. Then when he woke up, he'd look around for us so we'd get up to stand by him. The poor guy now has a UTI and thrush on top of all his other ailments. He must be quite uncomfortable. We are all extremely pleased with his progress and proud of how hard he is working. My dad's surgery this morning went well. He's not supposed to lift over 10 pounds and was told not to run for a week. After his surgery they wheeled him up to Jeremy's room in a wheelchair so he could visit Jeremy while he recovered.
Dad hanging with Jeremy while recovering.
Now on to what I love...

Random warm days in the middle of winter. Today it got up into the 70's and we couldn't get enough! We spent the morning soaking up the sun at the zoo and I was amazed by how much the sunshine and fresh air lifted my spirits!
Carter hanging with his buddy at the zoo.
Our amazing support system. We have such a wonderful network of family and friends who have been supporting us through this difficult time. We have been shown love through messages, letters, care packages, gift cards, and food. We feel so loved and taken care of and know the outpouring of love is also being sent to Jeremy through prayers and positive thoughts.

The kindness of strangers. My dad has been in contact with multiple people who were with Jeremy or saw him the day of his accident. Everyone mentions a man who was holding Jeremy and talking until paramedics arrived. He didn't shy away due to blood. He didn't worry about himself. He was just there for Jeremy and showed him the love we should all have for each other. As a family it was so helpful to know someone was there to talk him through it and support him when we were not. We have heard from runners throughout the community that local running clubs have been starting their runs with a prayer for Jeremy. We met some runners at local races who check in on Jeremy and one even brought Panera bagels up to the hospital for us. It's a good reminder for me that even the smallest gestures can make a huge impact.

Watching Carter and Elise's relationship grow and develop. They love each other so much. Carter is constantly asking for sissy to come play with him and Elise crawls after him wherever he goes. They make up games together and Carter's current favorite is to run from Elise and have her chase him. Each time he loops back by her she laughs so hard. It's the absolute cutest!

Valentine's Day. I am already looking forward to it with all the hearts and love and candy! I can't wait to make valentines with both of my little sweeties! I couldn't help myself and picked up some heart shaped glasses and heart glitter goo at Target. I'm a sucker for hearts. I've had our Valentine's Day decorations up since we took down Christmas and it makes me so happy to look at them. I've also been wearing my Valentine's Day socks on the regular.

Ty's Workout Schedule. I feel like he's finally found a balance with working out that makes him really happy. He likes to run and he likes to lift and he's now alternating those workouts every other day. I've enjoyed seeing him so motivated and excited as he watches his body transform. I've enjoyed the transformation as well, although I must add he is strikingly handsome no matter what!

Doing learning themes with the kids. But you already know that! It's so much fun to see Carter excited about learning and proud to share new information with others. He likes telling people the primary colors are red, yellow, and blue. Today at the zoo he told me that the arctic foxes were white for the winter due to snow and they'll be brown later.  He likes to teach Elise about colors and shapes pointing them out when we're driving or walking. It is so much fun to see him grow and learn and listen to him share information later, knowing that he retained it!
Carter experimenting with mixing colors.
My new Road ID band. Way back in the day my mom got us all Road ID bands that were on a fabric bracelet with velcro. Mine was out of date with a wrong number for Ty so we ordered a new one and it is on a silicone band. It is great piece of mind. Jeremy wasn't wearing his old one. His accident occurred around 11:30 am and it took them until 5 pm to figure out who he was and who his next of kin were to contact us. I know if I were in an accident my family would be contacted nearly immediately. If you are a runner, you should definitely check out Road ID.
Listening to Carter read books. It's so adorable to hear him making up words and looking at pictures to see what the story is about. He is always picking up books and reading to himself. People always joke when their kids are quiet they know they are up to no good. When Carter is quiet? He's off reading a book somewhere. Elise sees him and is drawn to books as well. Right now her favorite toys are bath books and socks. She carries bath books around all over the place. Often times she'll crawl by with one of Carter's socks in her mouth.
Elise crawling around with Carter's sock in her mouth.

Thursday, January 28, 2016

Funny Stuff Carter Says

Jeremy Update:

Jeremy has now been fully off the pentobarbital for over 24 hours. He is still hooked up to the trach but the doctors say he is mostly breathing on his own. He is slowly starting to do a few more movements. He has moved his arms slightly, wiggled his toes, and shrugged his shoulders. Last night when I went to visit him he pulled his lips up almost into a smile. He's moving his facial muscles more and flares his nostrils on occasion. The nurses say he doesn't like the oral care and will purse his lips in an attempt to keep them from doing it. They have been sitting him up in a chair to regain his abdominal muscles and he seems to move a bit more at those times. They have been keeping the tv on in his room for stimulation and even asked my dad what Jeremy normally likes to watch. He told them the news, so they have it tuned to a news channel. I know it will be a while before the pento is fully out of his system. It was so exciting to finally see his eyes and I'm very appreciative of how much he has improved in less than 4 weeks. I feel like this phase of recovery is the almost as hard as the first week because we are waiting to see what he will be able to do. He can open his eyes and blinks and can move his body some, but isn't doing anything on command. The doctors have asked him to do little things like stick his tongue out or cough and he hasn't been able to do that yet. It is scary to think this could be all the functioning he has for the rest of his life, but we are hopeful more will return in the next few days once the pento has fully worn off. They plan to move him to an acute care facility on Monday. Carter is very excited about that as he has been asking to go visit his Uncie J. Today he asked me if he could go visit Uncie J yet and when I said no, he started crying. He doesn't understand that Jeremy can't talk and wants to talk to him on the phone and asks Jeremy questions, waiting for a response. We've explained it to him, but he doesn't understand. He just misses his Uncie J and so do we! With everything that's going on right now I'm hitting a point of mental and emotional exhaustion to where I can't even think of something to write about. I figure it's about time for a light and funny post, so even though it hasn't been very long since my last one, I'm going to share some funny stuff Carter has said lately.

While driving in the car...
Carter: Why is your hair bumpy?
Me: What do you mean?
Carter: Your hair has bumps in the back.
Me: Oh, I must not have done a very good job straightening it.

Carter got out a bunch of plates and set them out around the table.
Me: Are you having friends over for lunch?
Carter: Yes! Mommy, Elise, the dogs, and baby squirrels.
Carter setting out the plates.

Carter pretending to be on his toy phone: Hello?
Me: Hello, how are you?
Carter: I'm at work.
Me: What are you doing today?
Carter: Just eating lunch.
Me: That sounds good.
Carter: Oh, and talking to that man.
Me: Who?
Carter: Well, and a baby named Sissy. She's at the hospital.

Carter: Shhh, somebody's asleep.
Me: Who?
Carter: The flowers.
Carter: I'm just pretending.

Carter to random stranger: Hi!
Stranger: Hi! Is that your baby?
Carter: Yes, her name is Elise.
Stranger: Is she a keeper?
Carter: No, Opa is a teacher. Sissy is a baby.

Carter: Mommy, where are we going?
Me: Bikes and balls.
Carter: Then why is your hair up?
Me: Because I didn't have time to fix it and we are going out in public.
Carter: No! You only wear your hair up when you run. We are not going on a run. Put your hair down!

Worker at Trampoline Place: Cool dinosaur on your shirt!
Carter: Thanks!
Worker: What's your favorite dinosaur?
Carter: Rexasaurus!
Worker while giggling: Mine too!

Carter named his two newest stuffed animals Rexasaurus and Little Sally.

One day at dinner Ty and I got into an argument about something that would not normally be an argument. Carter very seriously looked at Ty and said, "Daddy, you have to understand, mommy is still upset about Uncie J." It was so wise beyond his years and made me stop and realize I wasn't really upset with Ty I was just stressed and upset in general due to what is going on with my brother.

Wednesday, January 27, 2016

Wordless Wednesday

Jeremy Update:

Today was a big day for Jeremy. Jeremy has been weaned off the pentobarbital. It will remain in his system for 15-50 hours as his body burns through it. They removed the shunt in his head which was used to decrease the pressure in his brain. That was huge as they had mentioned at one point there was a possibility he may need to have an internal shunt for the rest of his life. They also took out his central line and disconnected the Zoll machine which had previously been regulating his temperature. An occupational therapist, speech therapist, and physical therapist all stopped by to see him as they will be providing him services when he is ready. They went ahead and sat him up on the edge of the bed and then put him in a chair to help him begin to regain his abdominal muscles after laying flat for over 3 weeks. At one point Jeremy placed his hands together and my dad moved them apart only to have Jeremy move them right back together again! I am hopeful that as the pento wears off he will begin to speak. I would love to hear his voice!

Elise crawled over by Carter so he handed her a book and they read side by side.

Elise thought it was great fun to pull up to a stand on the kitty littler box at Jeremy's house.

Carter loves playing with Mr. Jones.

We enjoyed a Mitten themed storytime.

We enjoyed a Mitten themed storytime.

Carter made some friends at storytime.

Carter playing with Elise's new Elmo doll.

We enjoyed a new game sent from friends.

Carter enjoyed trying on hats at Uncie J's house.

My little helper, haha!

Elise eating zucchini for the first time.