2 Years...

New bike for his birthday! Has hydraulic hand brakes which require very little hand strength to engage!

Today marks 2 years since Alistair's surgery, 2 years since our lives made a hard left and tumbled over the jagged rocks, swerved around the blind corners, dropped us into canyons and made us climb giant hills. We are finally beginning to feel like we are getting back on track, but still not quite on the main drag. Here is the post from that day here.

Had a great season as goalie. Currently taking private goalie lessons to be ready for next year!

I don't want to think about it too much as that day was traumatic on so many levels. Just the idea of sending our child back into the hands of strangers was hard enough. But to not see him again for HOURS and then to have him back changed in ways we never would have even imagined...well, I would have hauled him out of the hospital before his surgery, loopy on versed, in a heartbeat if we had known what lay ahead.

Nerf guns...so many Nerf guns!

It comes and goes, the guilt and the sadness of everything. For the most part we have come to accept that this is how our lives are now. For all intents and purposes, Alistair is doing great. I would say his recovery is at 85-90%. He is still struggling with fine motor skills as his hands, expecially his right, just don't want to get on board with the rest of his body and recover. He is still doing OT once a week and we try as much as possible to make him do as much of something himself before we help. Alistair just got done participating in the Northshore Summer Music Program (band camp) and along with working more on playing his trombone and learning to play and march for the Bothell 4th of July parade, they had elective classes they got to take. He ended up with xylophones and guitar and ukelele. This past Friday, parents attended and were treated to a concert, where Alistair had an improve solo with his rhythm and blues group (there were about 10 of them that got up and did a little improve) as well as went to their electives classes with them and listen to the music they had learned. First was his guitar and ukelele class. As soon as they started playing, my heart sank and I got so simultaneously angry and sad. Alistair was sitting on the floor with this guitar, not able to really wrap his hand around the neck or place any fingers on the strings and couldn't do anything but use his pointer finger nail to strum the strings (couldn't make a fist and use his thumb). I felt so bad for him. The saving grace, which is always the case, is that he wasn't bothered by it, was happily (and sometimes loudly) singing along and came over to show Gillian and I the guitar and what he had learned. I asked him if anyone offered him a pick and he said no. I asked him if anyone had any other alternative solutions for him, he said no, they didn't have enough time to do anything with him. I get that, I do. They only had 8 days and had to learn music to perform and they didn't have copious amounts of staff. BUT, I wish someone had watched him for 2 minutes and decided perhaps this wasn't a good fit for him and moved him to another elective that didn't require such dexterity.

Alistair, Gillian, Cooper and Bennett going to Art day camp together this week! 

Alistair has a great outlook on things and doesn't seem to get upset or bothered by everything. But he has his moments. This past Saturday, Alistair had PT with Brian. When they were finishing up, Alistair mentioned to Seth and Brian he wanted to be done with PT. Brian asked him if he was done with him and/or didn't want to come anymore. Alistair said he wanted to be done because he wanted to be normal...to which Seth replied he isn't and has never been normal! :) That made him laugh and they moved on quickly. Aistair is moving on to middle school next year and I think he is becoming more and more aware of his needs and how they aren't "normal" and doesn't want to be seen as special to his friends and, gulp, girls!! He actually told his para he didn't want her to be with him next year because he was afraid she would cramp his style with the ladies!! Dora told him she would walk behind him a few steps so they weren't seen together! Unfortunately Dora won't be with him next year, but he will have someone! I don't think they will follow Alistair everywhere, so he shouldn't have his style cramped too much. 

Last Day of School...soon to be 6th grader and 3rd grader!

Alistair got great check-ups with ALL his doctors. Dr. Lewin said his heart is looking good and was pleased to hear how active he has been with all the lacrosse. Dr. Apkon said she felt he had improved tremendously in his movement and flexibility since December. Dr. Anderson said he was growing great and is trending on the growth curves appropriately. Can't complain about much of that!

All of that said, life is good. We all have our health and it is summer and we are enjoying it! We don't have a ton of plans on the weekends, so we have made a list of day trips and places we want to visit. We intend to cross a majority off by September or October. The kids are adventurous and like to see new things. One of their dreams is to go to Idaho (I know, exciting!!). I think it is because they are known for their potatoes. Well their dreams will be fulfilled in a few weeks when we spend the weekend in Kellogg, ID! We will see the gold mines, ride the world's longest gondola (3.1 miles!) and play at the water park.

Birthday cake (adds up to 11) made by Grandma - Boston Creme Pie!

We won't mark this anniversary forever. Some day it will all just be a bad memory. But for now, it serves as a reminder that life can change in an instant and you never know what you can handle until you have to. We are stronger than we think and family is what binds that strength together, lifts us all up and carries us through. We are so blessed to have such wonderful family and friends who continue to do this for us! Thank you!

Alistair doing an obstacle course at PT!

Start and Stop and Start Again!

Alistair in Disneyland in April!

 "Happy New Year! 2017...wow, it's been a while! It is amazing to think midway through this year we will be 2 years out from our inital journey and the reason for this blog. Today has been a weird day. I got onto Facebook this morning and was doing my usual scrolling, skipping all the annoying news stories and politics and seeing what people have been up to in the last 15 hours. I came upon a post from the Mayo Clinic - Ebstein's Anomaly page. It was a video of a conversation/interview between Dr. Dearani (Alistair's surgeon) and another member of the Cardiology team. They discuss in depth about Ebstein's Anomaly. "

Enjoying Lake Winnepasaukee in July 

I sat down to write that on News Year's Day...and then got pulled away yet again. I don't know how many times I have thought about updating this blog, thinking I needed to let people know about something or just plain feeling guilty about leaving everyone hanging on and providing nothing! On the one hand, time is flying by and there seems to be less and less time to do things. On the other hand...we are doing things!! Alistair still has therapies and still struggles with fine motor skills, especially in his arms and hands, but we haven't let that stop us!

Alistair and Gillian at Camp Colam in August

Where to begin...well, let me finish my thought on the first paragraph. That video and a subsequent posting by the page caused me to feel anxious and took my breath away. I watched a bit of the video and had to stop because hearing his voice was making my heart race. Seth wouldn't even entertain the thought of watching it. Yesterday, we were driving by Children's and saw a couple cross the street, wearing their orange parent lanyards, going for a walk to get some fresh air and a break from the hospital (or at least that is what we inferred). Neither of us said anything about them as we drove by, but then Seth said, "I feel..." and before he could answer I said, "sick to your stomach?" And he concurred. We are almost 2 years out from that whole ordeal and it is amazing how something so small and unimportant as an orange lanyard can bring it all back in a sudden tidal wave of memories and feelings. 

Alistair went flying with our neighbor in July!

Today is Alistair's 11th birthday! 11 years old! I posted on Instagram and Facebook and spoke about the day he was born, the day it all started. I said, "never one to keep things boring, we set off on this adventure in a whirlwind." That morning was already chaotic in my mind. I was heading out to my appointment and then was meeting Carolyn at Costco. I had to buy all the food and drinks for my office's Open House that night. I asked Carolyn to help me because I wasn't allowed to lift anything, so I needed help with all the cases of drinks I was buying...plus the company is always appreciated! 

Thanksgiving at the ocean - camping!

I got to my doctor's appointment and got set-up in the room for a non-stress test. I pulled up my shirt, they placed a strap around my middle and turned on the machine to listen for the baby to move while I got "comfortable" on the table. After about 5 minutes and no movement, I was instructed to roll to one side...then to the other side...then back to my back. The nurse placed an alarm clock on my stomach and set it off, prodded my stomach a bit. Nothing...no response from the tenent! She left the room with the paper read out. She came back about 2 minutes later and with a huge smile and happy, shiny eyes she said, "You are going to meet your son today!!!!!!" I just looked at her and burst into tears! "I can't, I have to get food for work! I don't have anything packed! Sadie is home by herself! Seth is at work!" She grabbed my arms, got about 6 inches from my face and said, "none of that matters now!" Then she had me go down the hall to the sonographer's room to have an ultrasound to confirm that Alistair was done being inside. In the meantime they called Seth, who made a new land speed record across 520 and up 405, and was there by the time I was done with the ultrasound. We sat with the doctor who explained to us that Alistair was safe, but needed to come out. He wasn't going to tolerate being inside for much longer. They instructed us to walk across the courtyard to the hospital and get checked in. We did so and got right into a room. The first thing they did was put a monitor on my stomach and then were working away at getting an IV started so they could get me started on petocin. The midwife grabbed the read out of the fetal monitor and left the room. Then she came back pretty quick, announced that Alistair wasn't going to tolerate waiting for me to dialte to give birth and started about preparing me for an emergency c-section. I walked to the OR. I looked down the hall as I left my room and saw my parents sitting there. They also made new land speed records from Tacoma. They waved and wished us luck! 

Alistair plays goalie for the Inglemoor Vikings

Alistair was born with little excitement, other than it being 4 weeks early! We knew he had a heart condition 20 weeks into the pregnancy and knew the plan when he was born.  Once they did all the necessary first minutes tests in the OR, they took him to the NICU (Seth followed) to continue with the more in-depth tests and to get him ready to be transferred to Children's.  I was brought back to my room where my parents were waiting. I don't honestly remember much after that, but do remember when the transfer team brought Alistair in his little travel isolette to my room so I could see him before they left. 

In the year since I last posted, Alistair has made great gains in his recovery. He is down to PT every 3 weeks, due in a large part to the strength and endurance he has built playing lacrosse this year! He no longer has speech therapy outside of school and the little bit he has in school is enough to help tool the little things. He still has OT both in and out of school weekly. He still cannot write well enough, or long enough, to do it alone. His hands get tired quickly. He still has his para at school. We are hoping he can regain enough strength and stamina to not need a para next year in middle school, but that is yet to be seen! He sees Dr. Apkon on Thursday. He is beginning to posture a bit again, especially with his right arm. But, unlike last year, he can overcome it on his own and it isn't taking over. However, I would like to not see that!

Heart-wise, he is doing great! His heart is still recovering from the years of overwork it did. At his last appointment in December, Dr. Lewin put Alistair on a blood pressure medicine to give his heart a little break and help with blood flow. He sees Dr. Lewin later this month. It will be interesting to see if that has helped at all. 

We have finally started to see some benefits to why we did all of this in the first place. Like I mentioned before, Alistair is playing lacrosse this year. He seems to have more energy and interest in being active. While he still doesn't move that fast, he gets out there and moves and runs. We got him a new bike for his birthday yesterday. He was riding it back and forth to the park with the neighbor kids...the exact thing I was lamenting he didn't want to do 2 years ago because it made him tired! It is really nice to see this. It has been so hard to feel good about making this decision having to deal with the huge and unplanned toll it took on our family. 

Life is good and life is busy! School is almost out and summer is upon us. We are looking forward to a summer full of camps, camping and weekend adventures! With a few appointments upon us, I will be sure to check-in...I promise!

What a Difference a Year Makes!

Excited Campers!

5th year for these two!

We are in the thick of August right now when the bulk of our Rehab time was spent last year. Every day I find myself wondering what we were doing a year ago. Yesterday was a particularily poignant day for me. We took Alistair and Gillian and Alistair's buddy Levi to Camp Colman to drop them off for a week-long camp. They will be home next Saturday. This is Alistair and Levi's 5th year going and Gillian's 1st. They were all very excited and the camp staff was excited to see Alistair back after everything he has been through. As we sat there in the car waiting to be waived through to park and check-in, I glanced at the blog to see what was happening a year ago...

Alistair and some buds at camp showing off their swim bands

A year ago we took Alistair out for his first outing to U Village where he got to buy some team wear (he went with Sonics) and then bought some groceries to have a football party in his room for the Seahawks first pre-season game. I remember the process of having to pack his backpack with drink supplies (thickener for his drinks, straw, special cup), extra clothes and bathrom supplies. We had to find the right head rest for his wheel chair so he could safely ride in the car and have his neck supported when he got tired. Then we had to sign paperwork to check him out of the hospital for an hour or so. Once down to the van, we had to load him in the back, strap his chair down and find ADA parking at U Village. Everything was a process. It was a good day because we got to take him somewhere away from the hospital, but I remember feeling overwhelmed and wishing and hoping that we weren't facing this as our own permanent reality. 

What a difference a year makes!

Hennessey Island ready to take on the tide!

One happy family enjoying the fun in the sun!

Factory 5 Racing Car Kit Factory

Alistair and Uncle Ed taking us on our afternoon cruise!

Enjoying one of many nights of Cape Cod League Baseball

Alistair is doing really well. We had a phenomonal vacation back east. We were gone for 3 weeks and never missed home! We all had a great time relaxing, playing and enjoying friends and family. I don't know if it was the environment, the change of scenery and routine or if he is just in another upward trajectory again, but Alistair seems to be making huge improvements. There was a very noticeable difference between when we landed on July 17th and when we left on August 6th, He is trying to write and draw again, he is throwing a ball better, he is doing more with his right hand and he is slowly requiring less help with things. 

Drawing an airplane!!

Museum of Flight outing

Alistair getting ready go Up, Up and Away!

I asked him if he felt different, if things were getting easier for him. He said yes, he thought so. We found out he is going to have Dora, his para from last year, again this year. We are very excited about that, but he was slightly indignant about it, "I don't need a para! I can write!" Well, he may not need her all year, but I think a few more months at least! 

This past weekend Alistair got to go flying with our neighbor. He took him up in his plane and they went out for about 90 minutes. Alistair LOVED it and it looking forward to getting to go again sometime! Thank you, Tim, for your kindness and generosity!

Botox Update

How is the Botox working? What did the Botox do? How are things going since the injections? I apologize for the delay in reporting about how the Botox is going since it was done…summer has hit the ground running for us!

The Botox seems to be doing its job and Alistair seems to be slowly regaining his function. It isn’t an overnight process by any means and even as I type this he is sitting next to me on the plane to Boston doing his iPad with his right elbow firmly jabbed into my arm or side as he can’t sit with his arm all the way straight and relaxed.  But nevertheless, he has begun to use his right hand again. He needs some prodding as he has become accustomed to using his left hand. We have to remind him he has two hands…use it or lose it! He has held glasses in his right hand had taken drinks, he is holding his fork with his right hand to eat, he has become less dependent on us to help him with Legos because he can now hold them with his right while he builds with his left (eventually we would like to see that reversed!) and yesterday he willing colored at lunch at the restaurant. He asked Seth to make some outlines of spots on a cow that he could color in. It was a bit of work and he had to take some breaks to rest, but he did it and was pretty darn proud of himself. His therapists are over the moon at the changes and so glad to see him moving back in the right direction…as are we!

As I mentioned above, we are heading out of town. Our trip to Chelan last month was a blast. The kids had so much fun playing in the pool for 5 days and we enjoyed just relaxing and not having a schedule. This trip, we are heading to the East Coast for 3 weeks. When we land tonight, Judy will be picking us up and we will drive 2 hours north to Meredith, NH which is on the shores of Lake Winnipesaukee. We will stay at a family cottage on the lake through Sunday where we will swim, boat and relax. Then we will pack up and drive about 3-4 hours south to Cape Cod where David and Judy have rented a house for us, them and Ethan & Jen and kids to stay for up to 2 weeks. We decided to do the whole 2 weeks. This is our summer re-do and we are re-doing it right! We will be staying mid-Cape in a town called Brewster, MA (we stayed there 6 years ago). There is a great swimming beach with great sand castle building sand nearby and a trail similar to the Burke-Gilman trail for walking and running. We are thinking about taking the kids into Boston for a day or two…they spent about 6 hours there 2 or 3 years ago, but otherwise haven’t been. We don’t have a lot nailed down right now, we will just go with it…it’s vacation, right?

As an aside, I do have to say Seth and I are having a hard time right now with it being a year out. We both find ourselves thinking about the date and reflecting on what was going on a year ago. Guilt, sadness and anger boil up occasionally and rear its ugly head in the worst places. I don’t remember things as vividly, but I definitely remember the emotions. I have a specific event that pops up in my head and plays and it makes my heart cry. It was the first night I spent the night in the ICU with Alistair after he focused so hard to utter the words, “I want to go with you home.” Everyone was telling him good night and talking about going home and seeing him in the morning (home, of course, meaning the rental house). This was the first day he seemed to be tracking and communicating a little, and it was also the first day he started tremoring, which was scary for all of us! But the way he took my hand, pressed it against his face and looked at me while saying that phrase haunts me and creates a wave a guilt that then washes over me. I don’t think I will ever forget it.

But focusing on now, things are looking up, and that is good. 

Bittersweet Anniversary

Today marks a year since Alistair's surgery. One year ago today we had our worst day ever. It began as a day full of hope as we looked ahead to how having this surgery would change him for the better...more energy, more stamina, and a heart that worked the way it was supposed to. We had a lighthearted morning, trying to keep Alistair from getting too nervous and even enjoyed Alistair high on Versed batting at triangles in the air and making sure we could see the TV that was mounted high-up in the corner of the room. He went back alone, he wanted it that way and even though we both longed to accompany him for as far as we could, we wanted to respect his decision. Hours went by as we paced and checked emails and texts, kept busy with puzzles and books and found things to snack on. The nurse finally came to get us as the surgeon was ready to talk with us on how everything went. He told us things went great, the fix was a success and they were just monitoring his pulse and getting ready to close him and bring him up to the ICU. We were elated and relieved. Phew, we were on the road to recovery.

After lunch all hell broke out and I honestly cannot remember much beyond the tiny room they put us in to talk with us about what had happened. The faces of the people who came in were long and expressionless. They spoke to us and explained things and you could tell they couldn't even believe what they were telling us. Their words were confused and guarded, it was obvious that what they were saying was unrehearsed and they were doing a quick mental check to use their patient and family care training as they tried to put words together. There was no plan, they were coming up with it as they spoke to us. The word 'if' kept being used and I was getting confused and thought I wasn't reading the situation correctly. I finally put my hand up and with all the strength I could muster to not breakdown asked, "is he going to die?" The doctor, who to this point was really trying hard to be calm and collected and explain things to us in a not panicked manner, looked at me with a blank stare for a second and said "we are not thinking that way right now." Then I said, "can you please stop saying 'if' and replace it with the word 'when'? It is more hopeful, 'if' sounds ominous and hopeless." He smiled and agreed that 'when' was better.

The rest of the day was a blur. I don't think we fully understood the extent of everything until days later. The hope we had for his surgery quickly faded away to sadness, confusion and anger. Eventually the hope came back, but it is different. We hope for a full recovery, we hope for a happy, healthy son, we hope for normalcy, we hope for freedom from therapists, we hope for Alistair to play sports again. But mosty we hope for this entire experience to be behind us and out of our heads. 

We recently listened to an interview with Norman Lear, who is a TV producer and writer, known for among others things "All in the Family" and "Sanford and Son." He spoke about his philosphy on life and the two words he lives by, "Over" and "Next." When something is over, it is OVER (you don't dwell on it) and you look forward to what is NEXT. The sweet spot is a hammock hanging in the middle where you live in the moment between over and next. I found this is be a very freeing and intriguing philosophy and find myself thinking about it a lot. This past year is OVER, we don't need to dwell on what if's, why's and how's. We look forward to what is coming next and for the moment we focus on today...our happy son who spent the day swimming with his sister and cousins in Hood Canal, had a picnic lunch of fried chicken, potato salad and watermelon on the beach with his family and got misty-eyed tonight because even though he was happy to have us back home again, he missed his Nana and Papa he just saw 4 hours earlier because he had so much fun. That is what is important and that is what is NEXT. 

Quick Check In

The day went well! We hope to see some results in the next few days.

We arrived at Children's this morning around 9:45. We got all checked in and then they took us back to the intake area. We got Alistair all changed and cleaned and ready to go. He occasionally got a little concerned or stern looking or maybe a tad weepy, but Seth kept the humor moving and distracted Alistair with jokes. Dr. Apkon came in and chatted with us and Alisair as well as did a thorough exam. She marked all his areas she was planning to hit with a black "X." Today she asked about his thumbs and strongly encouraged that we do his thumbs as well. She hasn't steered us wrong yet, so we went along with it. 

Once she left, the remainder of the team came in to do last minute checks to make sure they had the right patient, the right procedure, etc. Then it was time for Alistair to go. Seth was going back with him until he was asleep. I told him to come give me a hug and get his friends (David and Tracker were his support team today). He came over to me, hugged me and buried his face in my shoulder. I think we was trying really hard not to cry, but was definitely weepy (I was doing the same thing!). Then the anesthesiologist asked Alistair if he knew any good jokes. I whispered in his ear to tell her the Cannibal eating Clowns joke and he giggled and turned around to tell her the joke. They walked down the hallway telling jokes and even went to sleep attempting to tell a joke..."what do you call a bug with 4...4...4...zzzzzzzz"

42 minutes later Dr. Apkon came out to find us in the waiting area. She was pleased about how everything went and felt confident she got all the areas as thoroughly as she wanted. Not long after we were paged that he was in recovery. We went back and he was wide awake and entertaining the nurse who was tending to him. They loved him. They kept saying things like "if only we could bottle your attitude and spread it around to the other patients!" "You guys are havng WAY too much fun in here!" They were sad to see him go, but knew he was anxious to get to Lake Chelan!

So they let us go finally, we got on the road and here we are. We are looking forward to a few days of R&R. We are also looking forward to seeing what kind of results we get from today! 

No More Wrinkles!

Tomorrow is a big day for us. Alistair has an appointment at Children's to have Botox injections...finally! We have been struggling with this loss of use thing and contortions in his right arm and hand for too long now. We went in to see Dr. Apkon at the beginning of June. It was decided at that appointment that he needed to come off his Artane completely and get back on his Sinemet...get him back to baseline where it was all good. She also decided it was time to take some additional measures and get us set-up for the injections. 

Since he has been off Artane and up on Sinemet we have noticed subtle differences. He seems more relaxed in the morning on the right side. But as the day goes on and he gets tired of fighting the tone in that arm, it comes up more and more until it is tight up against his chest. His left arm is much more loose as is his hand. He still doesn't keep his wrist in a neutral position...though he is getting his palm down to support himself instead of doing it on the back of his hand! 

The plan for tomorrow is to inject his bicep on his right arm as well as the some muscles in his forearms to help get his wrists back into neutral positions. They are doing this under anesthesia. Dr. Apkon feels the best way to get the best results is to do this with him out and relaxed so she can accurately pinpoint the targets using her e-stim machine. Last time he had Botox, when he was inpatient, they just numbed the areas. But he was awake and tense and she feels she didn't get as accurate as she had wanted. 

I am focusing on the outcome of all this, why we are doing it. I am not excited at the part where we walk him back, get him prepped and leave him after he is sedated. Last time we did that, it didn't end well. But I know I can't think that way. The best part is as soon as he is done, we are getting in the car and driving to Lake Chelan for the remainder of the week. 

Alistair finished 4th grade last week...crazy to think the school year is over already! It ended up being a good year despite the additional activities and needs. As he has done since all this happened, Alistair maintained a great attitude and outlook on everything and did great! He was a bit sad about ending 4th grade and is apprehensive about starting 5th...but we will just take things one day at a time for now! 

I will try to get an update tomorrow about how things go. If you could send positive thoughts to Children's around 10am, it would be most appreciated!