Rock Climbing

Jake had a really good week. We got to spend time with both sides of our extended family for Christmas, some of which we hadn't seen in a few months. We also had a lot of good quality family time. Todd and the boys took advantage of the nice weather and spent quite a bit of time outside. He and Luke tossed the football while Jake and Todd tossed a lacrosse ball. It was so nice to see them all having fun together.

One highlight of the week (besides Christmas of course!) had to be going rock climbing. Jake and Luke were both on a rock climbing team at Lifetime Fitness for about a year and a half before his aneurysm and have been talking a lot lately about wanting to climb again. Jake's doctor cleared him for climbing at his last visit and thought it might also be really good therapy. There is a rock climbing gym not too far from here so we bought them harnesses and a punch card for visits as part of their Christmas present.

Todd and I were both really excited to take them as well as a little nervous. Jake was a really good climber before and we weren't sure how he was going to react. He had done a little at school a few months ago, but this was "real climbing", tall walls which required harnesses and ropes. I'm happy to report he had a great time and did really well! It was so good to see him reaching and grabbing hold with his left hand, and getting good foot placement with his left foot. He needed some extra support from Todd but it didn't seem to bother him. He was just happy to be there. By the end he was getting pretty tired but they are both looking forward to going back. Here is some video I took http://youtu.be/U3KRj7kLTWE

The botox injections Jake got last week appear to be kicking in. He walking isn't as labored and his left leg is straightening up a bit. I'm looking forward to his PT tomorrow to see what the therapist has to say.

We are looking forward to leaving 2013 behind us and heading into a new year. We've all been through a lot the in the past six months. In addition to the obvious tough stuff, we've gained a lot of new perspective. We've been blessed by seeing the good and kindness in people, have a greater appreciation for the small things, and have grown closer as a family. Wishing you all a very happy 2014.

We Got Our Second Opinion

It's hard to believe it's been just over six months since Jake's aneurysm burst. Having all the extra six month appointments hit right in the middle of the normal holiday chaos has made for some interesting days. :-)

Wednesday Jake had his second opinion appointment with the Children's Ophthalmologist and she found the same thing as the first Dr. which is not what we were hoping to hear. She was able to explain things a little better which helped. From what I understand, his aneurysm and subsequent bleeding caused damage to the brain cells in the area where the optic nerve (actually optic tract when it's that far into the brain) runs through. I asked the Dr. if the optic tract can form new pathways similar to what

we've been told can happen with the brain and she didn't get us much hope. She said most likely the visual field damage would be permanent. There is a very small chance the optic pathways could reform and it could improve the field deficit, some. Time will tell and he'll have repeated visual field checks every six months for the next few years. Vision therapy won't help the optic nerves heal and since Jake has already instinctively been compensating for the loss of vision on that side,  we're going to hold off awhile. He's got quite a bit on his plate with OT and PT.

This visual really helped me make sense of all of this, so I wanted to share. This is looking from the top of the head, the blue represents where the optic nerve/tract are for the left field of vision. Jake's brain bleed was at about position 6 which correlates to loss of left side of his vision. When they showed me the visual field test, it looked almost just like this, with the blue representing what he doesn't see.

On Thursday, we were back at the hospital to meet with Jake's rehab Dr. His walking has really regressed the past few weeks which we think is attributed to the extreme tightness in his left instep. It's been forcing his foot to turn onto the outer edge, even while in his brace, and making his walking appear very labored. (If you stand and tip one foot to the outer edge, you'll feel it pull your whole leg out. Now try to walk, not very easy.) After watching him walk, the Dr. did a thorough exam and didn't find anything else that may be affecting his gait. He suggested giving Jake a different strain of botox to see if that will help relax the muscles so he has an easier time getting his foot flat. Now we just need to wait 4-10 days to see if it helps.

Jake is really looking forward to having the next couple of weeks off. He has no OT/PT or any other appointments this week, which is a much needed break. We'll continue home therapy this week, but are cutting back on that a little too.

We truly are blessed to have our family together this Christmas and have so much be thankful for this year. Thank you to all of you for taking time out of your day to follow Jake's progress and continue to pray for him. Wishing you all a very Merry Christmas.

Bronco Game

I had planned on getting Christmas presents wrapped this evening after the boys went to bed and somehow it's now almost 9 PM and I'm just starting the blog. Not sure where the last hour went...

The highlight of Jake's week was definitely going to the Bronco game on Thursday night. We won four tickets at our school bingo night a few months ago and the boys have been counting down the weeks until Dec 12th. Todd had taken Jake to a game when he was about 3 (he of course doesn't remember going), but Luke had never been, so we were all pretty excited.

It was chilly, but nothing like the cold spell we'd had earlier in the week which was a huge blessing. I'm not sure how long we would have lasted in 10 degree weather.

The boys had so much fun. Luke was a little freaked out by how steep the stadium was which saved us many trips to go buy snacks, he didn't want to move! I think their favorite part was yelling and screaming at the top of their lungs with everyone else when it was time to rally the defense. Unfortunately the broncos didn't win, but we had a really good time anyway. Todd and I had forgotten about the colorful commentary that tends to fly when they aren't playing well and the beer is flowing. :-)

We ended up leaving about 1/2 way through the third quarter. The boys were getting cold and tired and we could tell sitting in the cold that long was getting hard on Jake. He really stiffened up and was having a really hard time walking so Todd gave him a piggy back to the car. Luckily we got to part in the handicap lot right next the stadium.

On Friday, I took Jake to his first session of fascial stretch therapy. The muscles in his legs have been getting tighter and tighter over time hindering his walking and it was suggested we try it. Unlike regular stretching that attempts to isolate and stretch specific muscles, fascial stretch therapy targets fascia, the connective tissue found in, around, and between joints. It was explained to me that the stretching starts at the major joints and if those can be loosened, things will work their way down. I guess a lot of athletes use it to help avoid injury. What was really interesting was when we or one his PT's stretch him, he often winces, is clearly uncomfortable and really doesn't like it. The therapist worked on him for almost an hour and a half and he didn't complain of it hurting at all. I was really surprised when doing his stretches tonight how much more motion he had in his left leg. I'm hopeful that it will continue to help.

Good News and Some "Oh Boy, What's Next" News

It was a week of appointments, some good news and some "oh boy, what's next" news. Jake's first appointment this week was on Monday with a Developmental Ophthalmologist. We knew that he has some left side neglect from the initial aneurysm which included his vision, but we noticed a few things lately that lead us to believe it might be a bigger issue than we thought. It was the first time Jake had ever been to an eye doctor and I could tell he was getting a little unsettled with all the different tests being done. Long story short, we were told Jake has left sided visual field loss in both of his eyes which basically means he is not seeing out of the left half of each both eye. What's good is that he is seeing 20/20 with the vision he has. The doctor said since the vision hadn't come back in six months post injury, it's very unlikely that it will and that it will be permanent. The doctor is referring us to a Rehab Ophthalmologist specialist who works with a lot of brain injury/stroke patients to see if there is any kind of rehab/therapy that can be done to help him compensate. Jake's already started doing some of this on his own out of instinct. Not really the news we were hoping for, but now that we know, we can get him the therapy/help he needs. I did a little research after hearing Jake's diagnosis and found there are several different visual problems that can arise from brain injury and stroke. Three are more impairing than the rest....visual field loss (what Jake has), double vision, and visual/balance disorders. As odd as it sounds, I feel Jake is lucky getting the one he did. 

Then on Tuesday, Jake had his six month post surgery MRI. The only other MRI he had taken was only about 10 minute, so I wasn't prepared for the hour plus he spent in the MRI machine. They wanted to take a thorough set of images both with contrast and without. He was a trooper. I have to admit, I was about to climb out of my skin sitting in that room with all the clicking just holding his hand, I don't know how he stayed calm and still that long. After we were done, we went over to the stroke clinic for his three month post discharge appointment. They had reviewed the scans and said his brain looked good which was great news. They also feel his recovery is coming along really well. We won't have to see them again until May which was also good news. 

While we were there I mentioned what we found out at the Ophthalmologist and was surprised at the strong level of disagreement with the diagnosis. In their experience, they have seen some vision come back after six months and they think the visual issues are just general left sided neglect that will improve over time. They asked that we see one of the Ophthalmologist at Children's instead of the specialist we were referred to since they are more experienced with vision loss in kids. Quite an emotional roller coaster in two days time concerning Jake's vision. While Todd and I are hopeful based on what the stroke clinic said, we are going to wait until we get a second opinion before discounting what we were told Monday.

Jake's Turning 11

What was a good day for Jake today was a really rough day for Todd and I. Jake's 11th birthday is on Tuesday and we celebrated it today with a few of his friends. We decided to keep it small this year with everything that's going on and he invited four friends to lunch and a movie.

Most of the social interactions we've witnessed lately with Jake have been one on one. We haven't seen him in a group since we had some friends over right after he got home from the hospital. It was so hard to watch the four other boys be normal 10/11 year olds and watch Jake struggle to keep up. At the restaurant, Jake was still getting out of the car while they all jumped out and went running to the door. Over lunch, it seemed like he wasn't always able to contribute to the conversation. We had some time to kill before the movie and the boys were running around playing tag, and Jake tried to keep up but couldn't, so he just sat on the bench and watched. Even going into the movie, the four of them were quite a ways down the hall while Todd and I walked with Jake. The boys did absolutely nothing wrong, they were just doing what boys do when they get together...talking, running, laughing, being goofy...and Jake couldn't keep up. Most adults we encounter have a lot of empathy for Jake and take the extra time he needs. I've seen a lot of his friends exhibit that as well when it's one on one, which is pretty remarkable for 10 year olds. But I think the more kids that get together the more the group mentality takes over and they just want to have fun and run around. Again, perfectly normal and we don't blame them at all. But for Todd and I, it was absolutely heartbreaking to watch. Right now, Jake is not a "normal" 10 year old boy and can't do what the other kids do. He's having to recover both physically and mentally and at times it just seems so unfair. I would give anything to be able to take all this away from him.

On the flip side, Jake appeared to really enjoy himself today and didn't seem bothered by the things that were so upsetting to Todd and I. Just being around his friends makes him happy and he was laughing and smiling most of the afternoon. He was also able to sit through almost three hours of movie and previews which is huge. It's much harder on Todd and I watching the interactions that are so different than they used to be than it is on him. Because of how his brain has been affected, I honestly don't know how aware he is of all the things that aren't the same anymore. He sees his physical limitations, but I don't know how aware he is of the changes in his social interactions. I guess for now, the fact he may not be entirely aware is a blessing.

As I end the day completely emotionally drained, I'm trying to remind myself to focus on the fact that he had a good day. He's happy and he's here to celebrate turning 11. For that we are blessed.

Happy Thanksgiving

Last week was a really long week, one of the longest I've had in quite awhile. It wasn't that our schedule was any busier than normal, I just felt like I was having to fight for everything that Jake needs and it was exhausting. Services that are put in place to help him shouldn't be this hard to get. I still have several follow-up phone calls to make this week, but am hopeful with a slight attitude check on my part, I can make some better progress. By the way, if anyone happens to know of a swim therapist in the Denver metro area, would love the referral!

Jake did get a special treat this week. Monday night, Rush had a one night only "movie" of their concert. They had filmed a few concerts this summer and it was released at theaters across the country as a special event. Todd took both boys even though it didn't start until 7pm on a school night. They really enjoyed it and Todd caught Jake playing air drums along to many of the songs which we haven't seen him do much of lately. It wasn't the same as going to the concert, but it gave them a taste of what a concert is like.

We are all really looking forward to a short work/school week and spending time with family over Thanksgiving. We have so much to be thankful for this year and I need to take time to remember that when I start getting frustrated with all the red tape and bureaucracy.

I hope you all have a wonderful Thanksgiving!

Welcome to Holland

This is the first week in a long time that I didn't know what I wanted to write about when I sat down to do the blog. It's been a week like most others, but now that I look back, there have been a few things worth sharing.

Jake ate lunch in the cafeteria for the first time this week. He's been eating lunch at school everyday for the past few weeks, but it's been in his classroom with a few friends. Crowded tables, noise levels and the logistics of getting in and out of the lunch table with the attached benches have kept him away. He told me earlier in the week he had decided he was ready to try the cafeteria and wanted to do it on Thursday. Not sure why he picked Thursday, but from what I hear, it went well. 

While he's been working very hard in therapy and making consistent progress, the muscle in his left leg that control the flexing up of the ankle have not been responding....until now. Finally this week, it appears the muscle starting to come back. Jake can flex his left foot up about an inch off the ground which was really exciting to see. More exciting was the smile that spread across his face when he realized what he was doing. Getting his ankle back should help improve his walking and eventually (hopefully) allow him to get rid of his brace. His speed has definitely been improving even with the brace. He did a walk test back on October 8th and walked 240 meters in 6 minutes. This week he walked 352 meters, quite an improvement in 5 weeks!

Warriors won the Superbowl, 12-0! This is the football team the boys have been honorary captains of this season and they were both really excited to see the team win today. It was their first superbowl win and we were glad we got to share it with them.

Finally, this story has been shared with me three times in the past month by three completely unrelated people, so now I'm sharing with you. While the specifics of this story are different than our situation with Jake, I loved the author's perspective in dealing with the unexpected things life can throw at you. 

WELCOME TO HOLLAND

by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

We don't know how long we're going to be "in Holland," but we're doing our best to make the most of our time here and appreciate things in a different way. We are hopeful we'll get to Italy one day, but if we don't, that's ok.

Thankful

Many of my friends have been posting what they are thankful for each day in November on Facebook. While I am not actively participating, I am thankful for many, many things. The biggest being that while our family has been altered, Jake is still with us. I honestly can't imagine, and try not to think about, what our life would be like if he hadn't made it. I am very thankful for my incredibly supportive husband who is my partner in this journey. I am thankful for our other son Luke, he's had a lot to deal with at the young age of 8 (just turned 9) and amazes me at times with how he handles things. I am thankful to have such a wonderful extended family and caring friends who continue to offer help and step in whenever it's needed. I am very thankful for Jake's friends who treat him no differently than they did before and continue to include him in their activities. I am also thankful for the teachers and staff at the boys school, their support has been so much more than I ever could have expected. Finally, I am thankful for all of you who care about Jake and our family and continue to pray for his healing. We are truly blessed.

A few weeks ago, I picked up a copy of Jake's medical records while he was at Children's Hospital, all 1216 pages. I'm glad I chose the disk option instead of paying per page! I've been going through some of it and am still not through his time in the ICU. There is a lot that I don't understand because of all the medical terminology and abbreviations, but the parts I do take me back to a time when I really don't think I was allowing the severity of his situation to truly sink in. I don't think I had the emotional or mental capacity to realize how critical he was those first few weeks in the ICU. Reading his reports makes it very apparent how sick he really was.

It's also amazing how much I had forgotten, probably as a self-protection mechanism. One of the things I was reading a few days ago was about the first time they tried to take out his breathing tube. It started off ok with the assistance of an oxygen mask and a few nebulizer treatments, but by about 5:30pm his breathing was horribly labored even with the mask. I sat with him on the bed doing everything I could to help calm him down to make his breathing easier but nothing was working. I remember having to step out of the room a couple times to pull myself together because watching him struggle so hard just to take a breath was just too much to take. Breathing is normally something you don't even think about and shouldn't be that hard. I remember the scared look in his eyes and the horrible sound as he kept trying to gasp for air. I kept asking the nurse to get a doctor so we could do something for him, I felt so helpless. After what seemed like forever, a team came in, evaluated him, and determined they needed to put the breathing tube back in. He was then heavily sedated, breathing calmly and finally able to relax. Going through that was one of the worst moments I had with him in the hospital other than the night he was admitted. While I remembered the overall event, I had forgotten all the emotion tied to it.

I have to read the reports in small doses because it's just too much to take in all at once. But it also helps give me perspective on where he is today and how well he's doing. I watch him from a distance sometimes and my heart is so full of love and admiration for how strong he is.

I didn't intend for this to be such a long blog, but wanted to give a quick update on Jake's longer school days before signing off. He was there for four hours each day last week including lunch and recess. I can tell he's really enjoying it because the first thing he tells me about when I pick him up is something funny one of his friends said at lunch/recess. While he's been a little more tired, it's a good tired and he seems happier. He seems to also like the variety of subjects in the afternoons and I'm getting good reports on how he's doing. We did run into a new "snag" this week when on Tuesday due to the cold weather, we went to put on gloves. You don't realize all the motions a hand goes through while putting on a glove, but we'll just suffice it to say, it was a struggle for his left hand. Just when I think we've figured out how to accommodate things for him, something new pops up we hadn't anticipated. I'm sure there will be more to come and we'll just figure it out as we go along.

Halloween and Football

The boys were on their second week of fall break this week and it was once again a busy week in the Morgan household. The highlight was of course Halloween as it is with most kids this age. Jake was the 11th Dr. Who (it's a BBC series) and Luke was a green morph.

I have to admit, I was a little worried how trick-or-treating was going to go this year with Jake's limited mobility. The pace is usually a pretty quick one with a lot of running up and down people's driveways. We knew we were going to have to take him in his wheelchair. The plan was to take him close to the house and he would walk up to the door. Just getting in and out of the chair was going to take extra time and I didn't know how he was going to hold up. We went with two of their good friends and talked to all the boys before we left that things might need to be a little slower this year. Things could not have gone better. Jake was a trooper, he and his friend Jack actually lasted longer than Luke and Jack's younger brother Randy! I have to give Todd major props too. About half way through, we realized it was getting hard to see on some of the steps and Jake was getting tired, so Todd would take the chair and Jake up the steps to people's door. (We live in a somewhat hilly neighborhood and some people have a lot of steps!) Some of the time Jack took Jake's candy bag up to the house and Jake waved from the sidewalk. It was so great to see Jake having such a good time and I was very impressed with Jack who was so patient going at Jake's pace. All in all a very good night.

We also got to go to the Air Force vs. Army football game on Saturday. We decided not to take Jake's wheelchair since we had regular seating vs. the handicapped seating and weren't sure what we'd do with the chair. We parked as close as we could and Todd gave Jake a piggyback for part of the way in. Air Force games are always a good time, the weather was perfect and it was a great game (Air Force won 42-28). As we were leaving, Jake decided he wanted to walk all the way back to the car.

I'm not sure what happened but all of a sudden Jake's walking just clicked. Since the botox injections he is able to straighten his left knee, we've spent a lot of time the past few weeks working on his stride. He's been doing what we refer to as the wedding march. He would take a big step with the left foot, then bring the right foot up and even with the left instead of taking an equal step with the right foot. Logically it made sense why he was doing it. When all the weight was on his left leg, he wanted to get the right foot down as quickly as possible to shift his weight back to his right leg. He's been doing a lot of exercises to help strengthen his left leg, weight shifting between the two and working on balance. Well something worked because all the way to the car, he had a great stride. There is still some limp due the brace, but it's the best we've seen him walk since the aneurysm. I was so excited to see how well he was walking I took some video http://youtu.be/M7FgHuvKVoE. (Luke was very quick to take his turn getting a piggy back from Dad since Jake was walking.)

It's been a great couple of weeks and it's been nice spending some extra family time together. I'd be lying if I didn't admit that part of me is looking forward to the kids going back to school this week and all of us getting back into a routine. :-) Jake is also excited to start his longer school days that include lunch and recess. I'll let you know how things go!

Fall Break and Botox

What a great week! The boys were on fall break this past week and got to spend a lot of time with their friends, grandparents and we even fit in a trip to the Denver Mint where coins are made. It was so nice to see Jake tired from having fun instead of from his normal busy schedule. We are trying to increase his stamina and endurance, so are letting him push himself a bit more.This picture was taken at a corn maze my mom took them too not too far from here. I don't know what Luke was standing on, but he's not taller than Jake, yet!

Back on the 17th, Jake got botox injections in five locations in his left arm and two in his left hamstring. I was never aware of any uses for botox other than cosmetic and was surprised to find out it's pretty commonly used for to help relax muscles. My understanding is, muscles come back at different times so some have responded quicker than others and may be overcompensating for the opposing muscle. Jake has been really tight in his hamstring which has made it hard to fully straighten his knee when he walks. On his arm, we were noticing that his arm was often flexed upward and his hand was constantly in a fist. It took a lot of effort for him to try and keep his arm down and fist open. It was also hard to pick things up with his left hand since his arm naturally wanted to rotate out so his forearm was up. His doctor targeted three main areas of the arm: finger flexors to make it easier to keep his hand open; arm extension so he could fully extend his arm down; and inward rotation so it would be easier to turn his arm over and have his palm down. (Those are all my terms, not the proper names for all this!) We've been anxious to see how the botox would help since they said we wouldn't see much for at least 3-5 days and would see the peak effects between 10-14 days.

We're now at day 10 and definitely are noticing an improvement. His leg is not nearly as tight and he's able to straighten his knee when he walks. His arm has also really relaxed. The plan is to combine the botox treatments with his therapy to really maximize the results. He is now working with two different Physical Therapists, one who has a lot of neurological background and one who specializes in the foot. Same thing for his Occupational Therapists, one is a hand specialist and one who is more general. We've also stepped up his home therapy sessions. I can't imagine how hard all these exercises are for him, but he rarely complains and just keeps plugging away.

IEP and Longer School Days

Busy, busy week! Somehow it seems like our appointments keep getting all lumped together which leads to some crazy schedules. One of the big happenings this week was Jake's IEP (Individualized Education Program) meeting.

With Jake's return to school post-aneurysm, he has needed some extra support in the classroom. It was recommended by several specialists at the hospital that he be evaluated for an IEP in order to get the services he needs. Basically, an IEP outlines the delivery of special education support and services for a student with a disability. Accepting the label of "disabled" for a kid who five months ago was a "normal" kid has not been easy for us, it's all still very new. However, we have come to accept that while Jake is recovering, he needs accommodations/extra help at school and this is the best way to go about it.

Having never been involved with this aspect of the school, it's been a bit overwhelming trying to get up to speed on everything. There was a lot of testing that had to be done on the part of the school's special ed team (OT, PT, school Psychologist, Speech and Special Ed teacher) to determine a starting point so goals could be set and measured. Logically we know he's already made amazing strides during the past four and a half months but still has a long way to go to get back to where he was before the aneurysm. But it can be hard to hear the results of some of the reports that talk about his current deficits and it brings up a lot of emotion when you see things in black and white. What makes Jake's situation a bit different is the fact he is constantly changing as he recovers (which is a good thing!) and it makes determining his ongoing needs a challenge. They've already seen progress in him during the two months he's been back at school and we all know he will look like a completely different kid by the end of the school year. Todd and I left the meeting completely drained but thankful we have so many people in Jake's corner working to help him recover.

One of the things we've realized the past few weeks and was reinforced in the meeting was how important socialization is for Jake. He's still a 10 year old boy, misses doing things with his friends and needs some normal interaction for his emotional/mental health. Even though it had been a long week, he stayed at school on Friday for recess, lunch and his fall party. It was the longest he'd been at school and while he was tired due to all the activity, he had a really good time. After fall break, he'll start going to school for four hours every day, will be there for lunch, recess and more small group work in the classroom. We all think it will be a really good change for him and he is really excited. It will also pose some new challenges with mobility in the lunch room and on the playground, but the only way he can figure out how to deal with them is to face them head on.

It's Been a Good Week

It's been another busy week at the Morgan household, but one of the better ones we've had in awhile. Jake had a couple of really cool things happen this week that I think helped him see the progress he is making.

The first was on Wednesday. We had an appointment that morning and were a little late getting to school, so I took him straight to his gym class. They were getting ready to start climbing on the rock wall, so I stayed to watch. Both the boys were on the climbing team at Lifetime Fitness for about a year and a half prior to Jake's aneurysm and really loved it. I had heard about some of the adaptive pieces the gym teacher had put up and was excited to see how it was going. When I saw Jake actually climbing, I got really emotional. No, he wasn't going as fast as the other kids, and yes, he needed some help, but he was moving his way across the wall. And he was working so hard with his left hand and was able to grab some of the regular holds. It was really, really cool to see and I took some video: http://youtu.be/auQf8ycayo4

Friday was Muffins with Mom at the school and I got to go to Music class with Jake. (It was also mustache day and I had a hard time taking either of them serious with their huge mustaches.) They were learning some Greek dances which would have been a bit tough for him right now with the footwork, so his music teacher had him tap the big base drums to the beat of the music. It gave him the opportunity to participate with the class and he was able to play the drums. His teacher also gave him some great suggestions on clapping techniques that would incorporate his left hand.

The third thing happened today while we were at my parents house. I was going over some stuff with my mom when Jake comes in and says "I was just jumping on the trampoline." I couldn't believe it! I'd been wondering when he was going to be able to jump again since it's something he and Luke love to do together at their house. I went outside with them so he could show me, and he was having so much fun, smiling and laughing. It was great to see. They even got in a few rounds of crack the egg (a trampoline game they used to play all the time). And the best part of it was, when he fell it was no big deal, that's what happens on a trampoline. I got some video of that as well: :-) http://youtu.be/Mzy5jyVdeFI

My post tonight would not be complete without talking about the fundraiser yesterday.

Mackenzie and Abbie (left and center) were in Jake's class last year and the two of them along with Mackenzie's sister Taylor (right) have been making and selling rubberband bracelets for over a month to raise money for Jake. I was so happy we were able to go hang out with them for a little while during their sale yesterday. They really are amazing girls. The time and money they (and their parents) have invested to do this for Jake is really remarkable. Thank you to everyone who came to support their efforts for him. In the past month, they have raised just over $600 which is pretty incredible. Words can't express our gratitude for what they've done and how impressed we are with their compassion. Just another reminder of how blessed we are to live in this community with such caring and supportive people.

Fundraiser - New Time

Hi all - I just found out that they had to move the time of the fundraiser tomorrow. It's now from 12:30 - 3:30, still at Tallyn's Reach Library. We'll be there from 12:30 until about 1:45. Thanks!

Fundraiser on Saturday

I normally would feel very uncomfortable about promoting a fundraiser for Jake myself, but this one is a little different. Two girls who were in Jake's class last year started making and selling bracelets back in September to help raise money for his medical expenses. They came up with the idea completely on their own and I was so touched when one of the mom's contacted me to tell me about it. As I understand it, her daughter was very aware of all the costs after her Grandma had an ICU stay and she wanted to do something to help. Pretty extraordinary 10 year old girl.

I would love for their sale on Saturday to be a success because of all the time and work they've put in. They will be at the Tallyn's Reach Library at 23911 E Arapahoe Rd  Aurora, CO 80016 this Saturday from 10-12:30. Jake and I are also planning in being there part of the time to support them. If you're in the area and could stop by, we'd really appreciate it.

Thankful We Are Past That...

I seem to be in a pattern of posting on Sunday nights. I have good intentions of posting mid week, but before I know it, the week is gone. I'm sure many of you can relate!

I ran into another mom from school today who I've known since Jake and her daughter were both in Kindergarten together. We've often talked about how thankful we are that our kids are close to their siblings (her youngest and Luke are also the same age) and the differences between raising boys vs. girls. We got to talking and she told me she's been praying for me to be able to look back and think "Remember when?" It really got me thinking, in many ways we are already there. Jake is out of the hospital, walking, going to school, not fixating as much, getting around the house independently, etc....so there are a lot of "I'm thankful we are passed that" moments each and every day.

Then this afternoon, I was sitting with Jake helping him make a rubberband bracelet and had a "I hate it that this is so hard for him" moment. For those of you lucky enough to not be aware of the latest craze, consider yourself blessed! :-) Rainbow Looms are quite the thing now and using a crochet hook, small rubberbands and a plastic loom, the kids are making bracelets. (You can see Jake has several on his arm.) Anyway, before his aneurysm, this is the type of thing he would have sat down with, watched a few YouTube video's to get started, and gone to town. Today, he asked me to help him make one. I helped keep the loom steady, reminded him what color band went on next and what step he was on. He confirmed what he was doing with me during the whole process. He was so proud of himself when he finished, as he should have been. He did all the work, I was just there to help keep him on track. It was one of those mixed moments we have so often. So proud of what he has accomplished yet a little sad for what used to be. Watching the effort and concentration it took for something that would have previously been pretty effortless for him gets tough at times.

Then tonight, I had the opposite moment. I went up to tell the boys goodnight after Todd put them to bed and Jake met me in the hallway. He decided he wanted to lay out his clothes for tomorrow. Now, this sounds like not that big of a deal, but it was. When Jake isn't wearing his brace on his left leg, he is a bit unsteady and likes to have Todd or I right by him for assistance. I think I've mentioned before that the brace keeps his ankle from rolling and his foot at a 90 degree angle which makes walking easier. We are still waiting for the muscles in his lower leg that stimulate the ankle lift to come back. Anyway, the fact that he got out of bed and walked across the room by himself in only his socks was pretty remarkable. He hates walking without his brace, let alone without shoes. It's the first time since he's been home from the hospital that he's done it on his own and without it being part of his home therapy. It was a pure "wow, look at you!" moment and I had none of the thoughts that "this shouldn't be so hard for him, he used to do it all the time."

I know we will continue to have both kinds of moments, and probably for a very long time. It's just part of the process.

Longer Days and the Broncos

I realized tonight that my posts have been following the same theme as many of our days, ups and downs. I try really hard to stay focused on each day and be positive, but there are times when dealing with all of this just becomes too much for all of us. While Jake is doing really well all things considered, it's hard to see him struggle with so many things that life throws at him. Had I posted earlier in the weekend, this would have been one of the "downs." He had a rough day on Friday (first day of PE, a lot of appointments and a long week), and that combined with some other things going on, took me to the place where I needed to have a really good cry and get it all out. I finally started to shake off the funk I was in on Saturday afternoon and ended the weekend on a better note.

We extended Jake's time at school three days last week to 3 1/2 hours. His fatigue levels are improving and we really wanted to give him the opportunity to participate in some of the things he's really been missing at school. One day he stayed for lunch and the other two he went to Art and PE. He got to have lunch in the classroom with a few friends since we were concerned that the noise and activity level in the cafeteria would be too much right now. He was so happy when he came home on Monday and told me all kinds of funny things his friends had shared. He's always really loved going to Art and was so happy to be back in class. To be honest, PE was probably not the other special we would have picked for Jake this first week, but it's what he wanted to do and I knew the PE teacher would make accommodations so he could participate with his class. A fire drill during PE threw a bit of a kink in things and class didn't end up going as he expected. After a talk with the PE teacher about what happened and how things will look next week, he's excited to go back again.

Jake got a pretty amazing surprise on Saturday afternoon. A couple of  my brother Ryan's friends(Zach and Taryn Wilson and Garrett Townsend)

had been working on something for Jake for awhile and were able to make it happen last week. They had gotten in touch with JD Walton (center for the Denver Broncos, currently on injured reserve) to get Jake an autographed  football. They were hoping for a few signatures and were so excited when they picked it up and saw that the entire team had signed it. Zach, Taryn and Ryan came over Saturday with the ball and a display case. Ryan was very worried the boys might try and play catch with it and wanted to make sure it was protected, we assured him that wasn't going to happen. :-) Jake's been getting into football more since he's been involved with the Warriors and has been watching the Bronco games with us, so he was pretty excited. And I think a little shocked to be honest! It was really cool to look over the ball and see all the players names he recognized. He couldn't wait to show my dad today who is a HUGE Bronco fan and he was blown away. Todd and I were really moved that Ryan's friends wanted to do this for Jake and appreciate all that went into making this happen. He is getting quite the memorabilia collection between this and the things Rush sent!

A Good Weekend

Jake's stamina is definitely improving. We had a fairly busy three-day weekend and he was a trooper. On Friday, there was a case review on Jake at Parker Adventist Hospital with the Paramedics, EMT's and hospital staff that worked on Jake. We were invited to come in at the end so they could see Jake. Because of the rarity of Jake's case, they opened it up to other staff for continuing education credits, so we walked into a room full of about 30 people. Jake was asked to come up to the front of the room and each person who was involved in his care came up, introduced themselves and shook his hand or gave him a hug. We were so proud of how he handled himself. This is a picture with Dr. Markey, the neurosurgeon who discovered the aneurysm and bleed, then put in a bolt (basically drilled a hole in Jake's head) to relieve the brain pressure. He was so nice and personable and Jake's been retelling a few of his funny comments all weekend. His favorite was "What, you don't remember me?" They also gave him a firetruck they had all signed. We were reminded again how lucky we are that Jake is where he is today and greatly appreciated the opportunity to thank everyone in person.

The boys had another football game with the Warriors on Saturday. The team is doing such an amazing job of including both of the boys. Luke was asked to be the kickoff tee retriever and seemed to really enjoy it, but was completely wiped out since the team scored over 40 points. Jake stood for part of the game right with the players on the sidelines and they really made him feel a part of things. The boys got a nice surprise at the end of the game when the players took off their pads and all had on "Team Jake" and "Team Luke" t-shirts they had made the night before.
 
After we got home, Jake spent most of the afternoon outside. He and Todd played some frisbee, then Jake hung out with the neighbor kids. While he can't quite keep up and play all the things they do, he was able to walk around with them and participate and just hang out. It was so nice to see him so happy and having fun. 

On Sunday we had a family birthday party with Todd's family to celebrate his mom's and Luke's birthday. Both boys were happy to see their cousins and hang out for the afternoon. 

All in all a very good weekend!

Pluggin' Away

Geesh, it's been a busy week! It's been one of those weeks were it seems like we've had extra stuff on our schedule every day. Jake is holding up pretty well but I am exhausted!

Jake and I went back down to Children's on Tuesday for his one month post discharge appointment with his rehab doctor. We were so surprised to walk into the waiting area and see one of the friend's Jake made while in the hospital and another family we met during our stay. They were both there for out patient therapy and we were bummed we didn't get a chance to visit since the doctor was running on time. (Can't complain about that though!) The doctor said Jake is doing really well and progressing as he should. It's hard for us to see the progress since we've passed that point where he makes huge gains from one day to the next like when he was in the hospital. Big difference is, then his therapies were twice a day and that was all he had to concentrate on. Now he's part of daily family life, going to school, having homework, socializing, and just "living," so he recovery is not as concentrated in one area.

When I look back though at where he was a month ago, I can see the progress. He's so much more stable when he's walking and can go further distances without the wheelchair. His stamina is also improving and I'm noticing he doesn't come home from school completely wiped out. He is getting himself dressed faster and starting to do little things like carry his plate to the sink after he eats. He is also starting to drum a little again and Todd is really working with him to use his left hand and in the proper position. Jake really wants to take drum lessons again so we're doing what we can to help him achieve that goal. My favorite noticeable progress is the expression he has gotten back in his face. For a long time he didn't have much movement on the left side of his face and when he smiled, only the right side turned up. Now, he has his cute full smile back which helps get me through the day.

Warriors

I've been waiting to do this post for almost two months and am so excited I get to share this with you today complete with pictures.

When Jake was still in ICU, we got a phone call from the Principal of our school asking what we would think about Jake and Luke being honorary captains of his 13 year old son's football team. In addition to teaching them how to play football, the coaches want to teach them how to grow up to be good men. They are trying to impart important life lessons and the team has done things like participating in a toy drive at Christmas. Principal Smith (now Coach Chris to the boys since he is no longer principal of their school) told us what happened to Jake really affected his son Kaden and he thought Jake would offer some good perspective to his team.  Up until now, neither of our boys have been involved much with team sports and we thought it might be a good experience for them.

In late July, Chris and his family came to the hospital so his sons could meet Jake and give Jake and Luke their jerseys. Those of you that have seen Luke know he absolutely loves his an wears it all the time. Jake has wore his some as well (it had pretty stiff competition with his numerous Rush shirts) and told just about everyone he encountered about being asked to be a honorary captain. A few weeks ago the head coach, Bob and his son along with Chris and his son came to the house to talk to all of us about being honorary captains and what it meant to be part of the team. The boys were really excited and went to a practice this past Thursday to meet the team. I wasn't able to go with Todd and the boys, but from the excitement I saw when they got home, they had a great time and it sounds like a pretty impressive group of boys.

We went to our first game on Saturday and it was a great experience. Two of the players gave up their spots to walk out for the coin toss so Jake and Luke could go out, which I thought was pretty amazing coming from 12-13 year old boys. The other team captains out on the field with them were very considerate and inclusive, walked at Jake's pace and didn't rush him. I haven't got a chance to meet these boys firsthand, but was really impressed with their compassion. Chris had invited some of their teachers from the school to be there thinking it would be nice for the boys to see a few more familiar faces, and we really appreciated them coming. (Side note, the size of #13 in the white and the way he's looking down at Luke with a "why are you on the field?" look cracks me up.)

Unfortunately, we weren't able to stay for the whole game due to very dark skies moving our way. The wind was really picking up and with the wheelchair, you can't really make a run for the car if it starts raining. While we there, Jake was very interested in what was happening on the field and seemed to really enjoy the game.

I am really excited about the upcoming season and what this will mean to both the boys.

Oh, and the team won, 46-0. :-)

It's Been a Month

Jake has now been home one month and it seems like we are still learning something every day. Today I learned it's ok to cry with Jake when he is frustrated and overwhelmed.

When we got home from school I could tell something was bothering him, he was really quiet and just had that look on his face. He ended up bursting into tears because he doesn't understand why everything is so hard.  He's right, a lot of things are harder for him right now that he never used to give any thought to. Walking, using his hand to hold his paper in place, taking the lid off a water bottle, etc.

Today he was referring to some things they were working on in Math, he was just having a hard time getting it. I explained to him that even before his aneurysm there were times he didn't understand things right away and reminded him of some of the struggles he'd had with certain math concepts last year when doing homework. I also told him that not all kids understand new material the first time it's explained and it's ok to ask for help. That's when he really broke down and said "They are working so hard to teach me and I just don't understand and I knew how to do this before. Why does everything have to be so hard?" And with that, I just sat down, hugged him, and cried with him. He's right, just about everything he is doing just to function right now is hard and takes a lot of effort. He has to concentrate and work at everything he does whether it be walking and taking big strides, getting dressed, pushing himself up off a chair, going to therapy....his whole life is about focus and nothing is really effortless anymore. It's a lot to have to deal with and my heart just broke for him today not getting to be a regular 10 year old kid like he was just a few months ago.

Another thing we learned this weekend is that we need to make time for him to socialize. With his schedule as busy and structured as it is, there has been very little time for fun and talking with his friends. He's not riding the bus, going out to recess or eating lunch at school, which are all the times kids socialize. He's pretty much stuck with me for most of the day and a therapist or his home tutor for about an hour a day. He really misses being with his friends. We went to his den meeting for scouts last night and I could tell he was tired, but he wanted to stay and just hang out and interact. It's such a hard balance and one more thing we need to figure out how to fit in so he can have a little bit of normal.

My logical side knows all of this will continue to improve and it's just going to take time, but my heart breaks for the loss of the carefree life he used to have.

Fire Station Visit

Today Todd, Jake, Luke and I went to visit the fireman and paramedics who responded to our 911 call on May 31st. Some of them along with the EMT's had asked if they could come and visit while we were in ICU, but we just weren't ready. We then got moved to the rehab floor and Jake's schedule got crazy.

I felt bad when we got there because other than one man, I didn't remember the others even being in our house. Then again, things were a bit intense at that point. We learned a few things today that we didn't know at the time. Within minutes of assessing Jake, they knew he had a closed head injury. At the time they thought it was a delayed reaction from being hit in the forehead with a golf club two weeks earlier (that ended up having nothing to do with the aneurysm). He was in serious enough shape they were considering taking him directly via flight for life straight from our house. It was ultimately decided the ambulance could get him to a hospital faster for further assessment and stabilization. The whole time they were at the house, they were calm, professional, efficient and did not give us any indication of the severity of his injury or even that it was a head injury. I found out today one of them was outside on the phone with the Parker ER determining what would be the best course of action. I'm not sure if they knew then or found out later that one of the Centura Hospital Neurosurgeon's was in the Parker ER. He works out of four Denver area hospitals so the fact he was in Parker and only 10 minutes away was incredibly lucky for Jake.
 

Thinking back to that evening and now seeing it through a different perspective brought back a lot of memories as well as some clarity. Todd and I talked after we left the station about what we were thinking on the way to the hospital that day. We really had no idea what was wrong with Jake and certainly didn't even consider he had a head injury...there had been no symptoms. We thought we'd spend a few hours at the ER, he'd wake up and we would all come home. When we got to the hospital, we were taken to a private waiting room, clue #1 that should have told us something was seriously wrong. Within a few minutes, the hospital Chaplain came in and explained they would take us back to see Jake as soon as they could and then she stayed with us, clue #2. To my knowledge, Chaplains don't generally spend that much time with families in the ER for minor issues. When we were finally taken back about 15 minutes later, I saw all the paramedics, fireman, and EMT's standing off to the side. Clue #3, I don't think they generally hang around the ER for routine cases. What did finally tell us that something was seriously wrong was when we saw 15 or so medical people standing around a screen with a picture of a brain and a large white circle, the bleed, on the left side of his brain (it was taken from the top of the head so the right side of the brain showed up on the left side of the screen). We heard "those are the parents" and several eyes turned our way and took a step back from the screen to make room for us next to the Neurosurgeon. I will never forget that image as long as I live.

As hard it was to have all the initial raw emotion of that evening brought back to the surface, I'm really glad we went today. It filled in a few holes and gave me a more complete picture of the chain of events. They were all incredibly nice and very generous with their time. The Captain at the time has since changed positions and even came in on his day off to see us. It meant a lot to Todd and I to be able to thank them in person for being an integral part in saving Jake's life. They even gave a ride in the fire truck around the block which was pretty cool. I think it was a visit we'll all remember for a long time.

Labor Day Weekend

I am finding there are days I handle things well and days I don't. Today is one of those days I don't. The enormity of what Jake has ahead of him is hitting me really hard today. There is so much he has to re-learn...running, walking barefoot, walking on uneven surfaces like grass and sand, riding his bike, swimming, snowboarding...and those are just some of the physical things, the list goes on and on.

This weekend, we finally all got to the pool. We were so excited for the whole family to be able to go and enjoy a couple hours in the sun. Our OT at the hospital had suggested that walking in the pool would be great therapy for Jake. What didn't occur to us before we got there was how he would react when he realized his body didn't remember how to swim or even just kick his legs.

Shortly after this picture was taken he had a complete breakdown. He didn't understand why he couldn't kick his legs when he's been swimming since he was five. It was heartbreaking. Todd and I felt horrible that we hadn't anticipated his reaction, we thought he'd be so happy to be able to hang out in the pool with Luke and walk around. Big lesson learned on our part. His left foot is extremely sensitive and any texture such as carpet on his barefoot is really hard for him, so was the bottom of the pool. The heat of the pool deck and slipperiness didn't help anything either. Needless to say, our pool time was cut short.

I know we will all get this through this, and this was just one of those things that happened and we'll learn from it. There are also many positives that happen on a daily basis. Jake is getting much more independent around the house, and other than going up the stairs to the 2nd floor or to the basement, he's getting around completely on his own.  I just have to remind myself to continue to take things one day at a time.

It's Been a Good Week

It's been a good week and I feel we are all settling into our routine. Jake has been going to school for almost 2 1/2 hours each day and looks forward to it each morning. I can't wait see his smiling face at pick-up as he comes pedaling down the hall on the adaptive bike. We're going to therapy three times a week (speech decided they don't need to see us for another month, yea!), things are still hectic and there's always too much to do each day, but I think we all can relate to that!

Jake and I went to the hospital today for his one month Neurosurgery follow-up. He's healing well from his skull piece replacement and we don't need to go back for another three months. Even though it's only been two weeks since he was discharged, he was so excited to go visit his therapists. He got to see his speech therapist, PT, the school specialist and a few of his nurses. He was so cute telling them about everything that's been going on the past few weeks. He's already talking about seeing the ones we missed today when we go back in another two weeks for his 30 day post-discharge follow-up.

The other big news of the week is our dog Molly came back home last night. My parents have been watching her ever since May 31st, when all this started. We wanted to make sure Jake was more stable since the dog has the tendency to get underfoot, so we didn't have her come home right away. The boys were so excited to have her home and Jake was laughing this morning after being woken up to Molly peeking up on his bed with her face and paws in his face. I don't think I would have been as amused waking up to dog breath in my face, but glad he was happy!

It occurred to me the other day how lucky we are that Jake has such a cooperative disposition, which truly amazes me. Any time a suggestion is made to him such as "make sure you're taking full steps" or "step closer to the handrail, it will make going up the stairs easier" or "try using your legs to help push you back," he comes back with "ok Mom" or "you mean like this?" He is almost always agreeable, kind and sweet. He doesn't get snappy or give me attitude. If a kid has to go through some of the things that he is coping with, it sure makes it easier on a parent to have one with his demeanor. So blessed.