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!