Frazzled and Unsure

Before surgery, Jayen's seizures were easier to manage. We knew they would only happen in the morning and we kind of had a system down. Now this new Jayen after surgery is making me so frazzled and unsure what I am supposed to be doing.
Jayen had an extremely hard time laying down for a nap today. I think going back on Ritalin is really messing with his sleep again. Since it took him so long to lay down and sleep, I had to wake him when it was time to pick up Dalan from school. I think waking Jayen is the worst possible thing to do. Waking him seems to bring on seizures, but I had to get Dalan from school. I was watching him closely, but he seemed to be fine. We got in the car and I started backing out, when sure as shit I looked back and Jayen was having a full blown seizure. I was so upset and couldn't gather my thoughts. I didn't have a diastat with me and he was getting close to the three minute mark. I had to leave soon to get Dalan or I would be late. I tried calling Matt's cell phone but he didn't answer. I quickly called his work number. I think I needed him to direct me. I left Jayen and Brilyn in the car and quickly ran into the house to get the diastat. When I got back out to the car I was trying to determine if the seizure was over or if I needed to administer the diastat. Thankfully he seemed to be done.
I'm just so unsure what to do anymore. This was a crazy situation! No diastat in the car, kids buckled in, had to get to school, and I didn't have house keys. And we just went through brain surgery. What is going on and what are we supposed to do?

Running for Special Olympics

Today mommy did something she has wanted to do for a very long time but has never actually done it. Today I ran a 5K! I actually ran the whole thing. Through a series of crazy coincidences I had the opportunity to run in the Color Me Rad 5K with Nikki Dorn, Nikki Vaughan, and Kristin Wilkinson. The run was a fundraiser for Special Olympics. I'm so proud to have completed this event and so proud of where the funds were going. What a fun day!

 

 

Can't wait to do another one. I think I will convince daddy to do it with me!

Bye Bye, NO NO

After picking Dalan up from school today we saw Ms. Shank leaving around the same time as us. She came over and told Jayen goodbye and have a great weekend. We have grown so fond of her. She is a part of our family now whether she likes it or not! I sometimes feel like we need to have her over for dinner. Well, we started driving home and noticed Ms. Shank was behind us. I was telling Jayen to wave and she would see it. Then eventually she passed us and was beside the car. Jayen was so excited he was giggling! We were driving beside each other for quite some time, but eventually had to take our exit to go home. I guess I should have warned Jayen a better because when he saw that she kept going straight and we turned he immediately started screaming and crying. He was so upset that she wasn't beside us anymore. I never want him to be upset, but how awesome does it make this mommy feel that he wants to spend that much time with her! Thank you Ms. Shank for coming into Jayen's life. You have made an incredible difference in all of our lives.

Got our shirts today!

Can you tell who is excited about supporting her brother?

We love our shirts and can't wait to see your pictures in your shirts or show us in person for the Nebraska Epilepsy Walk in August!

AGAIN?

I don't know why it happened, but it happened again. This morning Jayen woke up and had another seizure. This was his first morning seizure since surgery. I'm so frustrated! I keep getting the response to wait six months. What is going ot happen to his brain during this 6 months? What do I do for him between now and then? Why does he have to suffer? I'm trying to give this up to God but am really struggling!!!

Back to the swim of things

I don't think Jayen minded being surrounded by all these girls in the pool today. This was our first OT/PT aquatic co-treat. I was impressed with how the ladies worked on Jayen's therapy goals while in the pool. Glad we have this opportunity with PTC. Can't wait for more aquatic appointments. 

Life sentence?

Four years ago today Jayen was given a life sentence with epilepsy. That catastrophic diagnosis has changed our lives. Infantile spasms may be gone but the seizures aren't. We were even blessed with this one today. I'm so mad and angry with everything he has to go through. He even had large portions of his brain removed and still these damn things won't go away.

What did you just say?

Jayen's speech has been developing so well lately. We are so impressed with the sounds and words he is beginning to say, but I don't think either Matt nor I were prepared for what came out of his mouth today. Of course I didn't have a video camera going the first time he said it but we tried again a little later. This time Jayen had some food in his mouth so it is a little mumbled. I still couldn't believe how clear his "thank you" was! Way to go Jayen!!!! Keep talking buddy!

 

Are you ready for some Football?!?!?!?!

We are difinitely ready for some football, Husker football! This is the day we wait for all year long. Spring Game!!! We love to be able to take the kids to the spring game and let them play on the field during half time. The atmosphere at the stadium is like nothing I have experienced anywhere else. I love game days in Lincoln, Nebraska!

 During half time we went on the field and took the drug free pledge with the kids. Jack Hoffman lead the kids pledge. He had brain surgery to help his pediatric brain cancer. We were hoping to get Jayen and Jack and their matching surgery scars, but Jayen wasn't having it. I don't know why he was so scared. He is very self conscious of his scar, but never like this. I hope we didn't scare Jack too much.

 What a great day! We love our Huskers, we love game day, we love family time together. Soon enough we will be split up and on opposite sides of the United States. This time is precious and I'm so thankful for every second of it.

Appointment day

We were supposed to go see daddy's aunt this morning, but daddy wasn't feeling good. She is battling cancer and needs all the strength! We would hate to get her sick and threaten her recovery. We will make sure we can stop next time Darlene!

We decided to let daddy have a little down time to recover so we enjoyed the pool. I was very worried about Jayen getting his incision wet. I can't even imagine how much bacteria is floating in a public swimming pool. The pool was pretty cold so thankfully Jayen didn't want to dunk his head anyway.



 

After the pool we got ready to go to the hospital. Our appointment wasn't until two o'clock so we took the time to stop to see our friends from the fifth floor. We knew their candy jar would be empty so we had to bring more. We miss them so much! Jayen was a little hesitant to go through the doors, but when he saw some of our friends he light up. We miss you all so much. 

 

The kids were excited to play with the stars again! After we got them away from the stars it was time to head to see Dr. Kebriaei's office. The kids were so excited to use the kids only door and not let us go through it. What a cute idea. These are the reasons we love being on the Children's side!

 

Dr. Kebriaei was very impressed with Jayen. He thought Jayen was doing great. We are so thankful for the care he gave our son. Next check-up, three months!

After neurosurgery we headed to see our epileptologist, all the way on the other side of the hospital. We had a special surprise for Dr. Frost. We made a collage of some of the pictures of Dr. Frost getting his ninja turtle tattoo. His face was priceless when he was getting the tattoo. We have grown very fond of this man. I hope he knows how much we appreciate him and what he has done for Jayen!



 

Dr. Frost asked us to not be discouraged about Jayen's seizures. They had a patient in that had seizures for three months after surgery then they slowly decreased until she became seizure free. Hearing this did help but I am still a little discouraged. I just don't understand, if we took out all the areas where seizures originate then where are the new ones coming from? I'm trying to trust and have faith! Dr. Frost wanted to check Jayen's drug levels, so we had to go to the lab. The lab just happens to be back on the other side of the hospital. So we headed back over to the same area we were before.

 

After labs, we were invited to Melissa, Mark, Olivia, and Daniel Devaraj's house. Olivia was in the hospital the same time as Jayen and had the same procedure done. Her surgery was similar to Jayen's too. We are so glad we got to meet their family. We had an amazing time comparing stories and chatting. The kids had a blast playing with the toys they were given too. Amazing people we are glad to call friends.

 

 

We love to keep in touch and hear how things are going. Keep working on getting better! And don't worry about touching your head Olivia!

VIP treatment at the Minnesota Wild game

Oh my goodness we could not have asked for better accommodations at the Minnesota Wild game. We arrived in St. Paul and checked into the hotel. Matt and I told the kids what we were doing, but Dalan wasn't excited and kept crabbing that he didn't want to go. When we got to the game we were escorted through glass door after glass door. We felt like royalty! I'm pretty sure we will never get the opportunity to do something like that again. We were escorted into our suite and told the caterer would be in shortly. There was popcorn, chips with three different dips, rice crispy bars with different toppings, brats with sour kraut, three cheese macaroni and cheese, sprite, lemonade, and water. Dalan quickly started turning things around and enjoying himself. I'm pretty sure all of us were enjoying ourselves.

 



 

The suite was donated by Dany Heatley! We wrote him a thank you note and sent him the address for this blog, so if he ever checks it out I would once again like to thank him from the bottom of my heart. I haven't seen Jayen, or any of us, smile like we did tonight. This was so amazing!

 

 

 

The kids loved being able to eat and watch the game from the countertop. Maybe it was more the excitement of getting huge rice crispie bars with chocolate chips and m&m's!

 

 

The balloon kept flying over the kids. They loved waving to it to see if they were going to be on the big tv.

 

The kids were dancing and bell ringing in the isles. Dalan and Jayen were booty shaking, and Brilyn was clapping at the players. The game went into overtime and the Wild won in a shoot out. Perfect ending!!!

 

One of the best parts of the night was also getting to share the suite with our good friends Amanda and Corey Krejce! It was such a surprise that the hospital called them and offered them tickets too. I'm so happy we got to reconnect and share the suite with them. Such an amazing family. We are so happy to know them. We love you guys!

 

 

 

Not so exciting trip just became more exciting!

When we left the hosiptal a month ago, can you believe it has been a month since surgery, Mr. Tom from Child Life told us to let him know when we were coming back for follow-up. He was going to try to get us tickets to a Minnesota Wild hockey game. We called Mr. Tom and gave him the dates but knew it was a long shot. It is getting toward the end of the season and there aren't a lot of people donating their tickets. When I hadn't heard back from him, I just figured it wasn't going to happen. Then late today I checked my email and Mr. Tom said he had tickets!!!! So exciting! Jayen, Dalan, Brilyn, and even mom and dad are going to love this! Then Mr. Tom mentioned that someone donated a suite so there would probably be a couple other Children's families. More families, awesome! A suite, awesomer! Catered too, AWESOMEST! What a fantastic surpirse for a not so exciting trip. Can't wait to share pictures!
Wish us luck. We are taking all the kids and driving six plus hours. I'm praying that all goes well with the drive. I'm praying that all goes well and we have no seizures in the car. I'm praying that the doctors can help us stop these seizures. I'm praying for a good bill of health for Jayen. He deserves it!

Seeing is believing

I'm so sad that I now have to believe that Jayen is still having seizures. The two seizures he had previously had were both when he was with daddy and I wasn't around to see them, but that had to change this morning. The kids were all getting ready for school while I was making breakfast when suddenly Jayen fell to the floor and hit his head. I was more worried about him hitting his head and wasn't paying as much attention to his eyes as I should have. I scooped him up into my arms and tried soothing him. When I looked down into his eyes my heart sunk to the floor. Jayen's eyes were getting larger then smaller then larger then smaller. I didn't want to believe at first what I knew was happening. I didn't want it to be true. I didn't want to see these damn things any more. I wanted them gone now and I want them gone forever! It didn't last long and I didn't have to administer diastat. He was a little uncoordinated but otherwise seemed fine. I on the other hand was not. Why did we just go through all of this? Why is this part of Jayen's life? What is going to stop these things? I'm mom and I'm supposed to have these magical kisses to fix all boo boo's and I just don't know where to get them from. If anyone has any extra magical kisses please send them my way. We might need a few to fix all of us.

Super Busy, Super Spectacular Weekend

We had such a busy, great weekend. Saturday we were able to visit the Amazing Pizza Machine with Matt's twin brother, our nephew Issac, and friend Heather! I was really worried about all the lights and Jayen's seizures, but just kept a very close eye on him. He was a little disappointed when he couldn't do all the rides that Dalan and Issac did, so Uncle Marcus improvised and gave Jayen a similar ride! I think we all had a little too much fun!

 

 

As soon as we got home, we had an impromptu family gathering. Uncle Marcus came over to our house and Grandma, Grandpa, and Uncle John came over too. It was nice to see daddy sit down and play cards with his family. Glad they were able to stop by. It doesn't happen a lot.

 

Sunday we got up bright and early to be one of the first ones at the zoo with our Amazing friends the Loftus'! God truly has a plan for everyone and I know I was put at Rumsey to meet Renee (and Nikki)! I don't know where I would be without her. Our kids have so much fun together and it is nice to help Renee out with Mike sometimes too. It really helps take a load off for her! We love them all dearly. I hope we get many more days like this before the big move. And they will have to come visit us as often as they can.

Brilyn's first train ride. And Mallory and William's too!

 

It was such a nice day out today. After naps we tried flying a kite in the back yard before daddy decided it was time to take off the training wheels. He strapped Dalan up and off they went. We followed them to the park and were so impressed. Dalan was a little hesitant at first but was off riding after only a couple tries. I'm so proud of both of them!

Our weekends with family and friends are dwindling, but we are trying to make the best of all of them!

First day back at school

So we bit the bullet and finally got the ball rolling on Jayen going back to school. I'm so nervous about this. Jayen, Brilyn and I were able to visit the classroom after dropping off Dalan and before the rest of the kids got to school. I think it was a nice transition for Jayen to be in the classroom and experience things again before everyone else arrived. Matt was able to take a little time off and pick up Brilyn so I could stay in the classroom and help figure out our new Jayen. There are so many things I worried about with him being back in the classroom. I know he is in great hands and I keep focusing on that. But this mom will be bitting her nails the entire time he is there!

 

 

Jayen's classmates were so excited he was back. It was the cutest thing ever. (I'm pretty sure his teachers were just as excited as the kids too.) We really missed everyone! We are so blessed to have such a wonderful school family.

Happy Purple Day!!!

Today is March 26th and it is National Purple Day for epilepsy! We tried spreading the word and awareness. We pulled out our purple and celebrated. We have all been on this crazy journey together. So we finished off the day with some delicious, purple Eileen's Colosal Cookies!!! YUMMMMMM!

 

Very intimate and personal pictures

I posted some pictures on the sidebar of the blog. These are very intimate and personal pictures of our time in Minnesota. I think they are a great way to see the crazy journey we went through. They break my heart watching them. Please know these are not censored and show everything. There are 425 photos so take your time!

Can I just answer everything with "I don't know!"

Can I just answer everything with "I don't know!"? I'm so lost and feel like there are so many questions coming my way. I'm supposed to gather all kinds of information for Medicaid so that Jayen can stay on the waiver, but feel I don't know where to start. There are so many forms and so many people I need to contact to get those forms and forms I have to fill out so I can get more forms. I'm lost in paperwork and trying to swim my way through it. I'm also trying to figure out Jayen. Who is this new kid? We have had two seizures since surgery and both have been afternoon seizures. I'm not sure what to do about him going back to school. I know I need to figure it out, but I have no clue what to do. I think he still needs almost constant supervision. I'm worried about his stamina during the day, but don't know whether he should start out for an hour, every other day, or if he should just wait altogether. There are so many questions and not a lot of answers. I am just going to start saying, "I don't know!" and make Matt answer everything!!!

FOUR years on this Crazy Jouney

Four years ago today Jayen had his first seizure. This has been one long and crazy journey. We had a tough time finding purple balloons (or any color balloons) in Yankton after Ryot's birthday party. We have let balloons go a few times now and Jayen has never had a problem with it before, but for some reason he was very upset about this time. He screamed and cried from the second I cut them off the weight to when we went back inside. I like to tell the kids letting balloons go is our way of sending messages to heaven. Hopefully those angels will share our message with God and ask for his help.

 

Please God, take my son's pain away. Take these seizures out of his body and give him a life filled with love and laughter.

 

Another one another heartbreak

Such a sad day today, we were packed and ready to go back to grandma and grandpa's for the weekend. Daddy and the kids were taking one vehicle and heading back early and mommy was going to the dentist then heading there when she was done. I tried calling the kids and Daddy when I finished to see if they thought of anything they forgot. No one answered. I was a little worried since I knew they should still have reception. I received a call back a little later with some news I didn't want to hear. Jayen had another seizure. This one more similar to his regular seizures and longer than the last one at 3 minutes.
I just don't understand. Why did we go through this? Why did Jayen have to suffer? Why did our family have to suffer? If the doctors were so sure they removed all the focus areas then where are these seizures originating from? So many answered questions. I called the doctor's office and talked to the nurse. She assured me over and over again that this is "normal". I wish I would have counted how many times she said that. I think she didn't say more than 10 other words. Apparently seizures can occur for 3-6 months after surgery and still have success. That would have been nice to know before we left, but that seems like a ridiculously long time for his brain to still have seizures. I just don't know whether to have hope that this is really could be the end to Jayen's seizures or if our crazy journey is no where from over.

Shirts are available

On March 5, 2014 Jayen underwent a brain resection to help his quality of life. Two weeks before we left for the hospital, Matt and I designed a "logo" for Jayen and got it as a tattoo. We wanted to always remember this crazy journey we have been on with Jayen. My mom then took the design and made shirts. What a great idea!!! Others started asking for shirts too. So this is how you can you get your own Jayen shirt! If you are interested in purchasing a shirt you can do it through this website. The shirts are $15 each plus shipping. They are available in Youth XS to XL and Adult S to XXXL. This is not a fundraiser even though the company is a fundraising company.
http://www.tfund.com/Jayen

 

We would love for anyone and everyone to join us with their shirts on August 16, 2014 at Shadow Lake Town Center in Papillion, Nebraska for the Nebraska Walk for Epilepsy. This will be our last year doing the walk in Nebraska (at least for a while) so we are going big. Mark it on the calendar and join us!!!

Such a heavy heart

I don't even know that I could utter these words out loud, but I believe my worst fear just occurred. Daddy was home with Jayen and Brilyn while I took Dalan to a friends house to play. I was taking a longer time than anticipated because I was talking. I figured daddy was calling to tell me to get home so I didn't answer. (SHHHHH Don't tell him!) But when he called back a second time, I knew something was wrong. I wasn't prepared for what he was about to say, but in the back of my mind I already knew it. Jayen just had a seizure. I'm so crushed. I'm so pissed. I'm so upset for Jayen and all of our family. Did we really just go through everything this past month only for these damn things to return? What the hell just happened? Why the hell did this just happen? Not even sure what to do or where to go from here.

Uh Oh

Still not sure what to make of this kid. I'm not sure if it is just the medicine, but he just seems so dazed and confused. It really reminds me of the beginning of his seizures. I hope and pray that those are gone forever but I am trying to be realistic that might night be the case. I'm just going to keep an eye on him and see if this gets any better. If not, I'm going to ask for another EEG to make sure there is no electrical activity.
But on the flip side, I can't get over this talking machine. Jayen is doing so well with the repetitive sounds. Before surgery has was occassionally saying words like bye bye, no no, ma ma, pa pa, and nigh nigh (night night), after prompting and clapping to remind him there were two sounds. Now he is doing it without the reminders or claps. Tonight he was even able to do two separate sounds when I asked him to say uh oh. I'm excited to see how fast this speech will improve. Still thinking by the end of the year we will be talking!!!!

Super special day!

I am still not sure how to get use to this new Jayen, but today was the first time I saw such a positive change. Matt and I kept looking at eachother in disbelief and awe. Today started with a great video chat with Jayen's teacher Ms. Shank and his classmates. They were very excited to see him and he was so excited to see them. I couldn't have done anything to give him a bigger smile.

 

 

We were able to stay on the computer and participate in large group with the class. Jayen loved singing the good morning song and saying hi to his friends. I know he misses them so much. We even had the opportunity to listen to the story for the day then Ms. Shank sent it home with Dalan and we got to see it and feel it at home. It was such a great connection for Jayen.
In the afternoon we had the opportunity to watch the class again when a special visitor stopped by. We tried skyping last week when she was in the classroom, but technical difficulties didn't let it happen. Mrs. B, from the library, was the special guest!!! Jayen was waiting for her to play the guitar. He loved the puppy book, but the guitar was his and Brilyn's favorite. This was just such a special day. I'm so glad we were able to do all of this.

 

Sorry Ms. Shank and Mrs. B, but I think the best part of the day (for mommy anyway) was during our surprise spur of the moment trip to the zoo. As soon as daddy and Dalan pulled into the driveway after school we were sitting in the car and ready to pull out of the driveway again. I'm not sure it was the best idea to take Jayen out to such a public place, but it was time for some fun. We brought sanitizer and kept his head covered. It was so nice seeing everyone's smiles. Jayen was so excited the words just seemed to roll out of his mouth. He was saying two syllables with no problem and even got out a few three syllable phrases. It was just so amazing. I really hope this is a look into his future. It was so beautiful! If this keeps up, I can see this kid talking by the end of the year. 

Not sure how to get use to this new life

Life at home has been nothing but a roller coaster of emotions. I don't know how we are going to get through this. Yesterday was so full of unpacking suitcases, laundry, finding places for all the new toys the kids acquired, going through 30 days of mail, cleaning 30 days of dust and grime, and learning how to manage my medically fragile child and give enough attention to the other two who are desperate for mommy and daddy. I'm finding it incredibly hard to keep 6 hands away from Jayen's head. Brilyn has, on multiple occasions, smacked him or head butted him and each time I cringe and cry, hoping and praying that it didn't do any damage. I'm on pins and needles constantly watching him. I am questioning whether everything I see is a seizure or just Jayen "drunk" on the meds. This new Jayen is hard to get used to. Don't get me wrong, I LOVE that he is sitting down playing, eating, and coloring. I love that he isn't bouncing off the walls, but I am wondering when my Jayen will come back. Will he come back? Will he ever be the same boy he was before? I cry every time I look at him because I love it and hate it all at the same time.

30 days of love and support

Oh what a crazy day! We were so hopeful to be getting discharged today that we had everything packed and ready to go before Dr. Ritter even made his rounds. Today marks exactly 30 days since we left our home for the hospital. It doesn't feel like that long though. Our experience at the hospital has been so positive. We have met so many wonderful nurses, who truly are amazing at what they do. We didn't mind being in 5026! We actually enjoyed it. Jayen was loved by so many! People would stop by our room every shift, our walks were filled with people stopping to say hi, they EEG techs would play peek-a-boo with him behind the counter, he convinced doctors, PA's, neurosurgeons and so many others to get tattoos, he had people falling dead in the middle of the floor while playing guns with him. It was never a dull moment! We wanted to thank them all for everything they have done for Jayen and our family. So we bought the biggest candy jar we could find and filled it to the brim. Inside we put a picture of Jayen with the caption, "You all were too sweet! Love Jayen". We are hoping that candy lasts a few weeks so some of our friends on vacation can enjoy it when they return too.

We walked around to personally say thank you to some friends. We are really going to miss them!

 

 

 

We also had to stop and tell Ms. Olivia good bye. Ms. Olivia had grids placed two weeks after Jayen. It was so great to see her positive attitude and great spirits. It was nice to share our journey with them too. We are so proud of her at how brave she is through all of this. I hope that we can keep in touch and see where her journey takes her. We will continue to pray for her and her family. We love you guys so much. Keep positive and know that there is a plan. It might not be the same one you thought it was going to be, but there is one and it is a great plan.

P.S. I hope you stole our room when we left!

 

We did eventually get to see Dr. Ritter and get our discharge papers, and we did eventually tell everyone good bye enough times, and we did eventually get everything packed in the car; living somewhere for 30 days you really accumulate a lot of stuff. So we were ready to get on the road and start heading towards our normal life. But I kept thinking about how normal this normal life was going to be. The really was the start of a new life. A new life for Jayen, a new life without seizures, a new life for all of us. I kept thinking about a conversation Matt and I had the day before. I mentioned to Matt that Jayen is only 4. There could be a time in his life where he doesn't remember having seizures. I don't remember much, if anything, from when I was 4. Could this catastrophic diagnosis we were given nearly 4 years ago really be just a blog post from the past? Could his story, his journey, be filled with normal kid things? Could my kid soon not have to come with a set of instructions? I'm overjoyed at this thought, but so cautious. Cautious that there is still only a 60% chance that this means seizure freedom.

 

The six hour car ride gave me plenty of time to dwell on my thoughts. Not such a great idea! So I called the pharmacy to make sure everything was in place to pick up Jayen's prescriptions as soon as we got into town since we would be about an hour late giving him his meds. And of course this is where the drama started. Two hours before we were supposed to be in town they informed me that the prescription was written wrong and they needed to clarify things with the doctor. So they put a page into the on call doctor and would wait for a response. An hour later they finally heard back from the doc and supposedly had it all straightened out. It took me six calls, including back to the nurses desk of the hospital I just left, and 40 minutes standing in front of the lady at the counter giving her the death stare because my son didn't get the 2pm dose that was recommended (that's what time we left the hospital and the prescription was faxed to Bellevue and no one put it together that we would need it before we got home) and they wouldn't give me the 8 pm dose because they were waiting for the doctor to call back even though I talked to the doctor and he said he wasn't calling back. I learned my lesson. ALWAYS pick up the prescriptions from the hospital so you have them in hand when you walk out the door! NOTE TAKEN!

 

We finally arrived home around 9:30pm. The kids were still up waiting for us. I felt so horrible and will probably be yelled at by the teacher tomorrow for keep him up so late, but we had been gone for 30 DAYS! All I wanted to do was hug my babies. I just wanted to be a complete family again. It was such a breathtaking moment seeing the smiles on every one's faces. Brilyn kept following Jayen around the house. She was so happy he was home, happier he was home than me! But ever so quickly the smile was wiped off our faces as reality smacked us on the hell. Well quite literally smacked Jayen on the head. Brilyn was playing with Jayen and his thermos cup and decided to smack him on the top of his head with it. I had no other reaction then to start crying and praying that we didn't need to start driving 6 hours back to the hospital. I don't know how we are going to do this. Jayen's new life, our new life is going to take some getting used to. This is just the beginning!

 

 

A little extra motivation

Jayen was struggling getting out of the room this morning. He was really upset when we told him it was time for a walk. I really couldn't have been better timing seeing a dog as soon as we opened the door. Jayen wasn't allowed to touch the dogs when he had the grids in for infection and shock reasons, so this was such a welcome surprise. There are often therapy dogs that visit the unit. I think this is such a great thing to have at the hospital. And this was one of the perfect reasons why. Ms. Maggie and her handler were more than willing to go for a walk with us. Jayen was even allowed to hold on to her leash and walk her himself. He had the biggest smile on his face. He immediately turned from crying to smiling. He was so busy enjoying walking the dog that he didn't even realize he walked 6 laps. We had previously only been able to get 3 at most. I hope the dog can come back again every walk time!