Summer Storm 2015...otherwise known as outing day!

Our day was quite exciting on many levels. We had Uncle Paul and Aunt Marie, who are in town from Massachusetts, along for a part of our journey. It was fun to have them along and be part of Alistair's outing to the mall. We arrived at the Microsoft Kiosk and were greeted by a very friendly guy who happens to know my brother from high school as well as Microsoft. Jeff had called ahead to let them know we were coming and to explain what a big deal it was! Ryan made sure Alistair felt like a VIP and took the time to talk to him about what video games he likes as well as what he was looking for. Alistair's speech isn't always discernible and it certainly isn't speedy, but Ryan was patient and waited for Alistair to finish what he was saying instead of filling in the gaps to speed up the process...something I have been guilty of doing! Alistair found what he wanted and we paid for the game. We headed to the Lego store next, but before we did, Ryan asked us to swing by on our way back. At the Lego store there was lots going on and tons of new stuff to view. Alistair zeroed in on the Speed sets and decided on the Porche Racing Station...he already has the Macleran and the Mercedes! When we headed back to find Ryan, he handed Alistair a box. He had bought Alistair a Richard Sherman jersey on his own doing. Such a sweet gesture and Alistair certainly liked it! 

Once we left the mall, we took our lives into our own hands and drove home via 405. Little did we know the extreme danger we were in until we got home. Our timing could not have been more perfect. The power went out in Lynnwood after we left and the millions trees fell on 405 southbound after we got off the freeway. However when we got home, we found ourselves with no power! Alistair was very disappointed, but did seem to enjoy being in his house for a little bit. We had something to eat and hung out. Jeff had power, so we decided to pack up early and head to his house. We had to take the long way as there were downed power lines and poles the usual way! Jeff brought his Xbox downstairs so Alistair could play his new game and away he went. He had fun but is frustrated by his hands not working properly and the Xbox controllers have so many buttons and joysticks to manipulate. But he will keep practicing, I am sure! I know he won't give up on video games THAT easily! We had a nice dinner with the family and then Seth and I headed back with Alistair a little early just to make sure to plan for any storm related traffic issues. 

Sunday Alistair had a quiet day with a few visitors. In the morning, one of his lacrosse coaches and his son came to visit. They stayed for quite a while. Alistair and Bryce worked on the rest of Alistair's Maclaren racing set together. After lunch his buddy Evan and Evan's parents came. Alistair ad Evan spent some time playing video games and then watched a movie together. Alistair really enjoyed having all his visitors. Gillian and I arrived in the afternoon after spending the morning going through clothes and getting ready for school. We got things gathered to go out to dinner. Alistair decided he wanted Calzones from Varlamos. A few weeks back some friends came to visit and brought calzones from this place. Alistair was still on pureed foods and couldn't try them. So we walked up to the restaurant, a few blocks from the hospital, and had dinner. Alistair really enjoyed the calzones. After dinner we walked a bit further to Baskin & Robbins for dessert. Then we walked back to the hospital and said goodbye to Gillian and Seth who were headed home to a dark house!

Today, Alistair had a busy day as usual. His therapies were spread out throughout the day and they kept him hopping. His HUGE accomplishment for today was walking UNASSISTED! His PT started him out on the walker but quickly had him just walk while she held the back of his gait belt. After a while and feeling/witnessing his balance, she contact blocked him and let him go. He walked great and was super excited when he realized she wasn't holding on! I got cleared to walk with him too, so now we can do more walking practice outside of therapy time as long as we stay on the rehab unit. When Alistair got done with his morning therapy, he asked his PT if in his afternoon session he could work on doing stairs!! She smiled and said we would do that in a few days after we work on walking unassisted some more. His motivation is awesome! We spent the rest of the morning/early afternoon walking around the unit instead of using his chair. He was exhausted by the time all his therapies were done for the day. He took a much deserved break and watched Planes Fire and Rescue while resting in his bed. Then we headed downstairs for a haircut. Children's has stylists who come in and donate their time to provide free haircuts for patients and their families. She did a great job! I was trying to figure out why Alistair would occasionally snicker during his haircut. Then it dawned on me that he has never watched himself get a haircut, he is always watching a movie! Funny!

The other exciting thing that happened today is Alistair's 4th Grade Teacher Mrs. Harper came to visit and meet Alistair. He was pretty excited she came to see him. We had a nice conversation, he got some news about what to expect in her class and talked about some of the first day of school things she will be going over with the class. I think it actually set his mind at ease a little bit about missing the first day/week or weeks of school. He is working on writing a letter to his class about why he isn't at school yet. It is in it's infancy, but it is giving us some great insight into what he understands about himself so far. We need to have some big conversations with him soon, especially before he does go back!

It is so hard to believe Alistair is the same kid who arrived at Children's on July 27th. He has made so much progress in a month, it's amazing and he is incredible! It is also so hard to believe tomorrow is the first day of September. I didn't spend one day of August outside doing something. Every day of August was at the hospital and all but 7 days of July was spent in a hospital. I had a "my life is weird" moment the other day. After I woke up and stumbled downstairs for coffee at Starbucks, I got myself and Alistair ready, ate breakfast around others who were also getting stuff out of the fridge to eat, got Alistair off to therapy and then headed to other parts of the hospital to do laundry and some other errands all the while greeting random people "Good Morning." And it seemed normal. We are living in this weird bubble where the people with the orange and green lanyards are in the same boat and are going through something similar. We have been in the hospital too long and it is time to go...with the way Alistair is progressing, it won't be much longer; which is good for everyone!

Changing Everyday

Alistair continues to amaze people daily. Thursday he got cleared by his speech therapist to eat regular food...but it still on nectar thick liquids. I know he would love to not have to have thicker liquids, but we have found things he can have that are already thick enough and taste good...Odwalla Smoothie drinks! Once we got back from the school Open House, we got a pass to take Alistair off campus and Seth, Gillian and I walked up to Metropolitan Market with Alistair in his chair to find something yummy for dinner that wasn't pureed or mushy! He went for it, that's for sure. A tray of spicy sushi, 3 rolls that were cut into 5 or 6 pieces, demolished! He has been reveling in his new found eating abilities and yesterday deemed his lunch "Blech" and wanted pizza. To be fair, he was wanting pizza for lunch and we weren't back in time to get his order in with nutrition, so they just sent him what was on the menu! So we went and got pizza in the cafeteria and he made sure to order it for dinner last night! 

Alistair continues to work on walking in PT. They haven't tried any other styles of walker with him and now that he has used it a bit, he mentioned he is getting used to it. I think they feel that this particular style is the best fit and function for him. He does a pretty good job and pushes himself a bit more every time. They measured him for a walking orthotic to force his foot come down the way it is supposed to and should be in this week sometime. 

His occupational therapist has continued to work on his bicep and getting his right arm to bend and engage all the muscles. She has had him laying on his stomach on the mat table using the iPad while up on his elbows. He does a pretty good job, but his right side gets tired quick. After being at school on Thursday I began to feel a bit anxious about his abilities to write and such as we haven't had him do anything with that yet. So Betsy had him write a Thank You note for her to put on her car for the firefighters in the Winthrop area when she goes to grab stuff from her cabin this weekend. She had to help him and guide his hand, but he did okay...with his left hand. He seems to be a bit bothered about possibly becoming a left hander. I told him might just be temporary and then he will be a double threat being ambidextrous. He has begun to work on his Lego sets again. He can pick up the Legos and place them, but he needs a bit of help to get them pressed down. He bought a race car set at the Mall of America and asked about building it the other day. He worked on it some with Seth and then also with his buddy Levi. Legos are a great fine motor skill for him to practice...and fun!!

Speech continues to get better and better. We all have made the comments we are having to ask Alistair to repeat himself a lot less. His speech therapists cues him to use his speech tips when he begins to become indiscernible, but has moved on to working on reading out loud, reading comprehension (along with the education therapist), playing board games, and having social conversations (along with the recreational therapist). And of course the more he is being understood by more people, the more he has to say! 

Gillian has become quite comfortable hanging out at the hospital, chatting up the nurses and getting around!

Our family conference went well. They continue to be optimistic about his outcome and are all excited about his continued rapid and ever changing progress. They still have us discharging mid September. We are nervous about this from the point of leaving before he has had an opportunity to maximize his time to work there. But otherwise, would love to be home and all back under one roof. We met his teacher on Thursday. She is very aware of what has been going and has been kept up to speed by the teacher at Children's. She was surprised to see us at Open House. She said she would like to come visit Alistair and meet him and I think that would be great! She seems really nice and I think just what Alistair will need easing back into school. 

The infamous Ramah!

We have another outing today. We are taking Alistair out much earlier than last week. He wants to go to the store so he can buy a new video game - Forza Motorsports Racing. We played this at the Microsoft Store at the Mall of America and he has been playing it a bit at the hospital with his buddies. So we are going to Alderwood Mall for the Microsoft Store and also the Lego Store, of course. Then we will come home so he can play his video game and anything else he has missed. Then we will pack up and head to my brother's house for dinner. They have a much larger space that Alistair can be in with his wheelchair. He will need to be back at the hospital by 8pm and I think he will be one tired kid...as will we! Wish us luck!

Steps to Walking

**For some reason my computer is not behaving and cannot get photos uploaded. I will add them later when I can. Just wanted to get some info out!!**

Alistair has had a very active few days. He has been playing lots of word games in Speech and kicking butt and taking names along with being comic relief. In OT, they been trying to tackle his right arm and get it to bend. The botox didn't really have the affect they were hoping it would on his triceps and they are still dominating his arm function. So they have decided to try serial casting to see about engaging his other muscles and stretch his tricuspid. People have asked about the green cast he is sporting in some of his photos; that is what it is for. He wears it for a while and takes a break. We try to get multiple wearings a day. His arm has been bending a bit better and he has been able to get it going on his own a bit. Yesterday they introduced some electro-stimulation to his bicep to get it moving and engaged. It seemed to respond okay. She is going to try to do that on a daily basis as well. We will keep working on it. 

PT has been keeping him very busy and sweaty. He did more crawling for a longer amount of time, has been doing some stretching and finally more walking on the parallel bars. Yesterday afternoon, his therapist decided he was ready to get fitted for a walker! The one we tried was one you hold and it is all behind you. He did okay. He was bit nervous and unsure, but he went down the hallway twice with it. His right foot, along with his right arm, doesn't behave either. His foot doesn't want to come down all the way and he ends up walking on the outside edge, kind of on his toes. They are going to make him a walking orthotic that will force his foot to come down. He wears splints when not up and about that help stretch out his heel chords. So hopefully with doing more walking it will help his foot remember how it is supposed to work. There are 2 other styles of walkers they are going to try with him. I suspect he might decide he likes the one that he used yesterday, but we will see.

Yesterday was the first time I have seen Alistair get upset about his condition. He was working on the mat in OT and one of the kids walked through the gym. He started to sob because everyone else is walking and he isn't. Then he also got upset because he can't draw. We acknowledged his feelings and told him it wasn't fair that he has to relearn all of this stuff. But then told him he is working so hard and in not time he will be doing both of those things. I also then pointed out to him that most of the kids are in wheelchairs and some of them are also walking. The girl he saw was only in a wheelchair 4 weeks ago when we first arrived and now she is strolling around without a chair. I told him he will be doing the same soon since it seems to be how he does everything else! 

I also had a few moments the past few days. I was walking through Fred Meyer and there were swimming suits on the clearance rack. I found myself feeling angry that summer was just about over and we didn't get to enjoy any of it. We had 2 weeks after school ended. Thankfully we crammed in a camping trip and a hiking trip, but didn't do any other summer activities. Then yesterday I saw Halloween candy out. I know retail starts everything way too early, but even so to be in that time frame where they deem it time to put stuff out mad me feel anxious and again angry that fall is upon us already. "No fair" came to mind, but I just can't embrace that phrase for some reason. I don't think it is fair for Alistair, but for me it is an inconvenience and part of being a parent. If I didn't want my life to be interrupted, I wouldn't have had kids! This whole thing is WAY more than any of us thought we would be dealing with for sure. And although it is happening to all of us, it is Alistair who is most impacted. If he can do it with such grace and humor, then we need to follow his lead!

Seth and Alistair ran into a familiar face the other day. When we were at Children's in the NICU 9 years ago, we had a lot of great nurse. But none were as great as Ramah! We all really clicked well and she took such great care of Alistair. She gave him his first bath and was there when we first got to hold him. I had messaged her recently about seeing her and she said she has been trying but getting out of the NICU is pretty difficult. Seth and Alistair sent to Starbucks by the ED and there she was grabbing a coffee! Hopefully we will see her again, but I know they were happy to see her!

Today is our Family Conference at the hospital and Open House at school. We are taking Gillian to school and decided not to bring Alistair. We felt it would be way too much today and might be a bit overwhelming for him. We are looking forward to meeting his teacher and chatting with her. I am also looking forward to hearing what the doctors have to say in his conference. Details to follow!

Getting Moving

Alistair had a quiet Sunday. He watched a movie with his sister and then in the evening watched another movie with his next door neighbor, Daniel. Alistair had invited Daniel to watch Silverado with him a few days ago and it has been hard to coordinate their time. We ran into him and his mom in the hallway and Alistair jumped right on inviting him to watch it! So they finally did it! It was an early evening as I wanted him to be rested for his work day!

He had a decent night, but got up and was subdued today. It took him until mid afternoon to really perk up, but he still worked hard and cracked jokes. He and recreation therapy today and for it he and Daniel went to Starbucks and had a drink and played Battleship. I was dismissed by Alistair to "get out of here!" with a sly Alistair smile and laugh! I appreciate the independence his is displaying and am glad he doesn't need or want us around constantly! He is really gaining confidence!

For PT today he had a whole hour and boy did he work! After doing some stretches and exercises, his therapist had him roll to his stomach. He did some supermans, got up on his elbows and then up to hands and knees. She then had him crawl up and back a few times. This was done quite well, with a little difficulty from his troublesome right arm. She then pulled out an exercise ball where he would sit on it and bounce to work on his core strength and stability then stand up and hold on to the table in front of him for a short time. He got a little break in his chair while moving over to the parallel bars. She had him stand up in them and then WALK to the other end and back. He was a little hesitant but did it. His right leg and foot weren't excited about the movement, but he made it work with a bit of a limp. With time and more work, he will get it all coordinated!

We know a handful of people who work at the hospital...like 5 or 6 (besides providers we have seen for 9 years), but to the nurses it seems we know EVERYONE! Just another reason we wanted to get home to Seattle Children's - friends and family at home and friends at the hospital! Thank you to our friends at the hospital for making frequent visits to check-in, bringing coffee or other treats and today to Tim for sitting with Alistair when we had an hour between when I had to leave and Seth could be there! Sounds like Tim and Alistair hung out and watched Teen Titans Go! Not too shabby, for either of them!!

One of Seth's co-workers, who is a former Children's employee, visited Alistair and Seth on Saturday. They took her to the rooftop garden. On the way back, she pointed out the Pee River to them. Of all the colors to make the water, they made it yellow. I casually mentioned it to one of the nurses and she knew exactly what I was talking about. Today Alistair wanted me to take a photo of him in front of the River of Pee while holding his nose to send to Seth's co-worker. Just another example of how Alistair's sense humor is well intact! 

Change of Scenery

Saturday was a big day! Alistair got a day pass to leave campus. He had therapies in the morning and then we opted to wait until his 2:00 meds were given to leave. He worked hard in his therapies in the morning, Gillian and I arrived and we all had lunch together. Then Seth and I helped him take a shower in his room. So much easier than how we had to do it before!! My parents showed up in time for us all to head out the door.

P-51 Mustang

We used their Lincoln for Alistair's transport and Seth rode in the back with him. My mom, Gillian and I followed in our car with his wheelchair. Alistair decided he wanted to go to the Flying Hertitage Collection at Paine Field, Paul Allen's air museum. Yes, he has been there before many times! We arrived and successfully extracated Alistair from the car and into his chair. We spent a couple of hours walking around and looking at all the planes, tanks and helicopters. We took in a few short films about WWII and the roles of the airplanes on display in the fight. Then we loaded everyone back up to go home. We had to make sure Alistair understood that we couldn't go IN the house before we went there. Truth be told, we could carrying him into the rec room. But it wouldn't be safe to help him step up the steps. We really didn't want to have him fall on our watch (or at all anytime!) and get our privleges revoked. He was cool with hanging out in the backyard. 

P-47 Thunderbolt

We arrived home and I let the neighbors on either side of us and across the street know we were out front. I have never seen them move so quick! They came out visitied with us and him for quite some time, taking many opportunities to hug him. Nancy next door has been especially heart broken about Alistair, so I think it did her a lot of good to see him! Then we rolled him into the backyard and set up our deck furniture in the only flat-ish space in the yard...the usually swampy space right in the middle! A few more friends came by to visit for a bit until dinner was ready. Alistair really enjoyed seeing familiar faces and of course being in a familiar place!

My mom made an Alistair-friendly meal that we could all eat - meatloaf and baked sweet potatoes. He got a little sad that he couldn't have salad, but he had a few more stuffies instead (stuffed clams). Alistair ate his weight in meatloaf and potatoes. My Dad was helping him and sharing his horseradish with him...Alistair absolutely LOVED it! He has been eating a little better at the hospital now that he gets food that is formed, but obviously home cooked food is WAY better! We ended our meal with peach shortcake, which he also enjoyed! We quickly cleaned up and had to head back. We wanted to go say Hi to more people, but ran out of time! Next time!

Alistair had a fun day! He got a little sad about having to go back to the hospital. Seth told him we wanted him to stay home too, but we wanted to do it when he could walk around the house and get everywhere on his own. In order to be able to do that we need to go back to the hospital and do more work. He seemed to understand that. We got back and raced around to get him ready for bed. Sounds like he may have had a restless night last night. I am thinking so much stimulation and activity yesterday had his mind active most of the night! Today will be more of a quiet day, he can rest up for Monday and getting back to work!

Gillian was ready for bed before we headed back to the hospital, complete with slippers. She is holding the Rainbow Dash Pillow Pet Alistair chose for her at the gift shop! 

Today was a good demonstration of our determination to get him walking again, which he will! We were all wiped out from the day. It was a lot of work getting him from place to place, to use the bathroom, everything is more difficult. Obviously we will get used to whatever we need for him, but being in a wheelchair permanently will dramtically change our way of life for sure! I know he will be walking again. In PT yesterday he stood at the parallel bars for 3 minutes very tall and strong. We need to work on stamina and soon he can work on taking steps. I think once he gets a big stronger, it will come back quickly! 

Completely Untethered!

Alistair had another big day today! He started the morning off by getting his NG tube pulled...well he pulled it himself with a bit of help in the end by his nurse! Thank goodness, that thing has been SO annoying to deal with and having it not in the way makes life so much easier. Alistair had to meet a fluid intake goal for the past 2 days as well as take all his meds orally last night and this morning. No problem, give the dude something more challenging! So we can now see his entire handsome face!

                

He also has been talking more and more. It isn't always so clear, but he is tenacious and will resort to getting his alphabet board if need be, but has more often than not got us to understand what he is saying. This morning when he woke up, he smiled and pointed at the TV. I said, "what do you say in the morning?" He said, "Can I watch TV?" I said, "No, what do you say to someone after you get up in the morning?" He said, "Good Morning, Mommy! Hey, I am getting clearer and clearer everyday!" He is so awesome! Gillian came this afternoon (thanks again Suzanne!) after camp to hang out with us through the afternoon and evening and she was so excited so hear her brother talking more. She was so great with him today. She really has jumped in to learning his way of communicating and helping understand his needs. She was super patient with him playing Wii and helping hold the remote and push buttons...she even went so far as to lose on purpose and I am not sure Alistair caught on as she isn't great at Wii to begin with! The best part was watching them together laying in his bed watching some videos on the iPad. He has a wiley arm that goes up and down and could easily get her in the face. She just dodges it and doesn't seem to let it bother her. Or she helps him get it down if he needs it. She is so sweet with him and patient. I think him talking more today has made her excited about having her brother come back to her. All of this is so huge to her and understanding it has been difficult. I think she was afraid he wasn't the brother she knows. But I think she sees now that he is and wants to help get him better so he can come home.  

                         

Another milestone that is quickly getting met is toileting. Without too much detail, this has been an issue for him to this point. We have to help him transfer to the toilet, but he is getting more regular use of the bathroom facilities! One more thing to check off the list! He can also use the shower chair in his bathroom, so no more going to the one down the hall. All these things are happening because he is getting stronger through his legs and can stand and move his feet a little, with help. He can also sit on surfaces and help scoot himself. The more he does this, the stronger he will get. Soon he will be doing more standing exercises that will lead to taking steps and balancing. He moves through all of this with such quick succession, he is such a hard worker.

We had our family conference yesterday. It went well and they had nothing but great things to say about Alistair's continued progress and upward momentum. They have set a tentative discharge date for mid-September, but it is a soft date. If he continues to make headway and there is further he can go and more gains to be made, they will keep him longer. In addition to how the child does, they also look at family fatigue and function. We have such great support through our friends, family and neighbors that we can handle whatever they decide. The idea of living this split up life for another month or so is not exciting, but we can suck it up to benefit our child. I think we have shown to this point that we will do anything we need to help him. Sleeping in a hospital room isn't hard, it's just annoying! 

Hank, the therapy dog! Alistair is on the list for any and all dogs! :)

Seth and I have made the realization recently that we haven't had sad days for a while. I can't remember the last time I had to choke back tears or compose myself. He says he hasn't had to psyche himself up or put on a happy face to go in. We both are feeling cautiously optimistic about the future. I think Alistair is proving that he is going to get past all this nonsense and go back to how things were, and with a better heart! I don't want to get too ahead of myself. I have made concessions in my mind that if things don't fully recover, that I hope we get to a certain point. I, of course, want him to fully recover. But I am also trying to be realistic so that I am not disappointed and anything beyond my expectations is a great and happy bonus. Alistair is the toughest and bravest kid I know, he can do anything and I believe he will! 

Leaps and Bounds

Alistair continues to do things in big ways. Everyday he wakes up ready to greet the day and meet the challenges. He has such a great attitude and his spirit is so positive. I was remarking to a friend today how kids are so resilient and capable of overcoming much more than adults. A testament to that is the fact that Alistair, despite his huge set backs and having to relearn everything he learned when he was 2, is doing it all with such a positive outlook and a sense of humor. He isn't laying around saying, "why me?" Adults find it easier to get into this funk and seem to have a harder time finding the silver lining in the situation. I still think at some point we will meet with some push back and negativity, but right now all the disappointment and sadness comes in little instances that pass like a rain cloud on a windy day. 

Alistair had a swallow study today and has officially been bumped up to nectar thick liquids (WAY better than honey thick) and his diet has been improved to dysphagia mechanical...which is fancy for soft foods that need to be chewed. No more pureed grossness! Already we have seen a change in his appetite and willingness to eat more. This should go a long way in helping get rid of his feeding tube, which hopefully won't be too much longer!

Alistair did a lot of standing pivot transfers today. Both of my parents have been cleared by the PT to perform transfers with Alistair, which is helpful when they stay the night with him. Alistair also got clearance from his OT to do transfers to the toilet and shower chair, with help. This is nice as we can shower him in our room instead of down the hall with a cumbersome shower chair...which might translate into more frequent showers as it will be easier and more convenient. 

Alistair has been doing more and more assisted standing. They have the standing machine which he gets strapped into and you pump up the level until he is standing up straight. It provides a good stretch on his hamstrings and heel chords as well as some good weight bearing on his feet. They have also had him doing some standing while holding the parallel bars unassisted for different durations of time. Alistair has been working on trunk strength and stability and has been doing lots of sitting on the edge of the table or bed and reaching out to grab stuff. 

The past few days Alistair has begun to try to talk more. His speech and enunciation is better in the morning and it gets less discernible by the afternoon and evening. With his talking, he is becoming more social. He says Hi to the other kids as they pass in the halls, tells all his nurses, doctors and therapist Hi when they come in the room as well as tell them jokes! The recreational therapists planned a group activity yesterday for the kids to make exploding volcanoes together. The kids were very social, chatting about different topics. In the end, Alistair invited one of the other kids to watch a movie with him. It has yet to happen as the kid wasn't feeling well today. Perhaps tomorrow! I called in yesterday to see how everything was going before I headed in. I asked Seth to tell Alistair Hi for me and he offered to let me tell him over the phone. So he put the phone up to Alistair and I said, "Hi Alistair!" and he said "Hi Mommy!" Music to my ears!

Tomorrow is our third family conference. Once again, in a week, Alistair has made HUGE progress. He continues to change and boggle everyone's mind with what he accomplishes. The doctors really seem to be tickled with his progress at the same time find him hard to nail down as far as goals as it seems some take longer and others are achieved in very short order...but not necessarily ones that seem like they would be short goals! Another thing we will talk about is getting a day pass on Saturday to take Alistair out and off campus. We need to chat with him about where he would like to go. Hopefully we can stretch it into a few hours somewhere. He got upset today when we were talking about which car we would use. We are going to borrow my parent's Lincoln sedan to transport him as our vehicles all won't work (2 SUV's and a Coupe). Of course, we sell the Taurus and then end up actually needing it! Who would have thunk?!? Alistair was upset and none of us could figure it out at first. Then it dawned on me that he was upset because he didn't get to ride in the new Durango. We told him we were working up to that by practicing in easier cars and that we were getting running boards for it, so he would have to at least wait until that was done! Even Gillian has to heave herself up into the car!

Tonight after dinner, Alistair got back to his room and decided he wanted to sit in the new to us recliner that is now in our room. Apparently it needed a new home and our nurse thought we might like it as we tend to have lots of visitors from time to time at the same time! He looked pretty cozy in the chair and I think it was a welcome change from his bed or wheelchair!

Movin' Right Along

Alistair had a fairly quiet Sunday. Nana stayed with him Saturday night. They had a slow morning together and then we all showed up. My parents hit the road to head home and the rest of us went to the gift shop to look around - per Alistair's request. When we got back, Jen and Heather had arrived to visit and shortly after that Aunt Donna and Uncle Dan. We had a nice visit with everyone. Jen and Heather stuck around for lunch and we at out on the patio. Grandma Judy showed up right before they left and then once it was just us and Judy, Alistair and Gillian settled in to watch another movie together. Seth, Gillian and I headed home and had a nice evening together. Alistair and Judy also had a nice evening together and a decent night sleeping.

This morning, Alistair woke up ready to go. He was talking up a storm and enunciating fairly well! I took Gillian to camp this morning, so when I walked in Alistair was in the middle of OT. They were working on self-feeding and hand control. Then he went to speech and had school coupled with it. His SLP was very excited about all the talking he was doing. In PT we worked on sitting up on the mat table and then leaning to one side or the other and then sitting back up again. He did great with that and has really rebuilt a lot of trunk stability. He had a 2 hour window of rest before his afternoon sessions. In that downtime he had his wound dressing changed. Only about 2 inches of his sternum incision still needs to heal, the rest of it is scabbed over! It is amazing to see how quickly that healed over! 

This afternoon he worked with his SLP on eating some chewy foods, to help move his dietary restrictions up past pureed status. I think he did a great job, she wants to work with him a little more before she gives the green light to nutrition. I think getting off of pureed food will do wonders for his appetite and eating! We also requested for them to stop his overnight feeds in an effort to help him feel hungry in the morning. His appetite doesn't really show up until lunch time and we think it is largely due to the fact that he "eats" all night. Their rationale for it is that it is making up for calories not consumed throughout the day, which might be. But it is kind of a catch 22 and if he can be hungry and eat more then he won't need to make up calories! We are willing to be wrong! 

Alistair's pediatrician stopped by this afternoon for a visit. Alistair decided we would hit Starbucks and then go drink our goodies at the Rooftop Garden. We did some chatting and Alistair impressed her with his alphabet board use, and spelling! We got talking about her summer plans and the camping they have done. Alistair spelled out, "What, no fair!" and then burst into tears! Poor buddy, this is so hard. I think he forgets there is life going on outside of the hospital and when he is reminded it hits him hard. We aren't trying to keep him in a bubble, but are also trying to make it easier on him to recover. We still have camping plans for this year and intend to keep them and go! We also intend to make up a lot of other things that we missed this summer next summer. I am not looking forward when school starts as I am sure Alistair will be upset about missing the beginning of school!

Tonight Seth and Alistair are hanging out and Gillian and I are at home. So begins the ships in the night phase, although we will have a few nights here and there where others will stay with Alistair or will stay with Gillian. Each of them should also have both of us together with them occasionally! The scheduling has begun! Day one of all the team back in play went fairly smoothly. Hopefully that continues!

A big outing and other things

Friday turned out to be a big day. We got up, had OT where he worked on self dressing and self feeding. Then speech came in and co-taught with the education therapist. Scott, the teacher, had taken some of Alistair's books to read and create multiple choice questions from them to make it more interesting to Alistair. Alistair chose his Sports Moments 2015 book to do. They read the excerpt together and then Scott put it down to do the questions by placing the book upside down on it's pages with the binding facing up. Alistair quickly pointed and said, "No!' and indicated he wanted his alphabet board. Then he proceeded to spell out, "That is bad for the binding! My librarian said so!" Mrs. Huizenga should be very proud, she has taught Alistair good book habits! Scott and Laura, his SLP, thought that was great! Alistair's PT sessions consisted of getting him ready for his outing. We got situated in a wheelchair and then headed out the front door where we boarded a Children's accessible van and rode to U Village. We went to the Seattle Team Store where Alistair was given $30 by the Recreation Therapist fund to spend on what he wanted. He chose a Sonics hat and matching Skyline Socks. Then we headed over to QFC where we picked out some good football food to eat while watching the first Seahawks pre-season game. Alistair got refried beans, sour cream, guacamole, and salsa. He also chose a fancy root beer to drink. 

When we got back, Alistair was exhausted. His afternoon sessions of OT and PT consisted mostly of stretching and range of motion exercises. He also took a nap to refresh for the evening activities. While he was sleeping, Papa, Nana, Natalie and Gillian showed up to watch the game. Grete had also come by to hang out as she had arranged for me to get my haircut, which was WAY overdue. When Alistair woke up from his nap, he asked for a frappucino. So we all headed down to Starbucks for treats and he drank an entire 12 oz decaf frap in no time flat! Then we came back up and got ready for the game. We watched for a bit and then it was time to get ready for bed. Papa stayed with him and had a guys night together!

This morning we headed in after breakfast and Alistair had already had OT and PT and was heading to speech. When he was done, we got a 4 hour pass to go off campus. We packed up a backpack and headed up the street to go to Metropolitan Market to look around and find something good for lunch. As we were heading up the street and stopped to take some photos with the Ronald McDonald statue for Gillian, Alistair's buddy and outpatient PT, Brian, caught up with us. He came to visit and heard we headed up the street. He joined us on our trek. We perused the market, found some tasty stuff for lunch and headed to the adjacent park to eat. Afterward we headed back to the hospital to get back in time for 2:00 meds. Then Alistair and Gillian watched a movie together while the adults chatted. 

Tonight my Mom is staying with Alistair. We brought Gillian home to have dinner with her. She is obviously having a hard time with everything as she spent most of the evening punishing us and pushing buttons. There were tears shed, but we had some mighty big discussions. We all agree everything sucks and nothing is fair for anyone. But we need to keep talking and helping her understand. She may never fully understand, but she is at least sympathetic and obviously loves her brother. We'll get there!

Sleeping in, bike riding and athlete's, Oh My!

Well, much to my pleasure and surprise, Alistair had a restful night. He slept all night with very minimal waking. The nurse came in at 5am to do some things, which woke up Alistair. I thought for sure he wouldn't go back to sleep, but he did and slept in until 7:30. Once he was awake, we had to get dressed and into his chair so that he was ready for his OT at 8am. Together they worked on getting out a shirt from the drawer and putting it on. Then they headed down the hall to the day room where they worked on eating via self-feeding, something Alistair has become more insistent on doing lately. His speech therapist met us in the day room and she and Alistair worked on some different sounds while playing a game. This morning he began to try to talk. He speech is off and on discernible, although as the day wore on his talking went away and he was back to mostly answers choice questions or using his alphabet board. But it was so great to hear him trying. When he got back from speech, some friends stopped by to deliver some goodies and say Hi. Alistair suggested we take them around to show them some of our favorite things to do and then requested his friend push his wheelchair for him. When they got back, it was time for PT, something Alistair was really looking forward to as yesterday she had mentioned riding the bike. First she fitted him for a different and lighter wheelchair. Then we got him into the bike and he peddled all over the 5th floor and spent about 30 minutes riding around. He seemed to have fun and also got some good stretches through his legs doing it! 

                     

Nana and Papa, Gillian and Natalie came up to visit today. They brought up lunch and we ate out on the patio. Natalie and Gillian were being off and on silly and Alistair was having a grand old time watching and laughing at and with them. Other than not speaking, it was like having regular old Alistair at the table! He worked on eating his lunch himself while we ate and occasionally used his alphabet board to communicate statements or jokes! When we got back to the room, we were told there were some Sounder players in the room next door and wondered if Alistair would like to meet them. He said yes and they came by. We met Cristian Roldan, who plays midfield, and Darwin Jones, who plays attack. It is both their first season and both played for UW. Go Dawgs! They chatted with us for a couple, signed some cards for Alistair as well as Natalie and Gillian and posed for photos. Really nice guys!

                     

After that excitement, Seth and I took off for our weekly family conference with the care team. It was SO different than last week. To their credit, last week was 4 days into therapy when they made their goals and recommendations. But after the past week, they were so optimistic and excited at the progress Alistair has made. They have lofty goals and high hopes for him. We asked about the discharge date they had dictated last week and the attending shook her head and said it wasn't accurate based on the progress he has made and the anticipated trajectory of it. She feels his stay will go into September as a longer length of stay will help him progress much further in his recovery and maybe get him to the point of walking out of the hospital. This was more in line with what we were thinking when we entered this program, as far as length of stay, and wasn't surprising to hear her say it but was actually comforting that they weren't getting ready to boot him! Now this doesn't mean we are excited about being at Children's into September and means we have to deal with chaos for a bit longer. But in this scenario, it is a good thing to take the time and endure the chaos. 

We had a bit of down time this afternoon. Then we were informed that a group of kids on the unit were all in the day area playing video games. There are 5 boys between the ages of 8 & 11 on the unit. So Alistair wanted to join them and we obliged. He ended up playing Wii while they were all playing Minecraft together. Alistair currently lacks the dexterity to handle an Xbox remote, but can do a Wii remote pretty easily. Plus he can't communicate, so doing Minecraft with them was hard. But I think he liked being around the other kids who all had wheelchairs or other medical equipment attached to them; even if he wasn't chatting them up. It was also nice to chat with the other parents and kind of commiserate with them. As we were getting ready to head back to the room, Alistair's OT brought in her therapy dog, Lilly, to visit him. She is a golden retriever and very sweet. Alistair is definitely getting the hook-ups on dog therapy and loves every minute!

Tonight we hung out together and had dinner while we watched cartoons. Seth's first day back at work went well. He will go back tomorrow and then we are to the weekend. The next step is figuring out how next week will work as Gillian will be home, Piper will be home and we all need to be a family again. We will think about some good stratgeies as well as call upon local people to help us with some logistics. Considered yourself warned! 

Biscuits and Gravy

Gorgeous sunset view from our room!

The nutritionist comes by every other day and we chat about the food Alistair is getting and what he has liked and what he hasn't liked. The food is very much hit or miss, mostly miss. Alistair loves biscuits and gravy and I asked her about it. They have pureed biscuits and she thought adding the country gravy would be okay. Well, Alistair FINISHED his bowl of biscuits and gravy this morning...Seth was hoping there might be a bit left for him! :) I have a feeling this will be a frequent breakfast item! 

I apologize for the lack of posting over the past few days. I have had a number of people check in to see if everything is alright since there has been nothing posted. All I can say is there is hardly time to do so! The last few days have been busy and exciting. Alistair has been making progress in leaps and bounds. The recreation therapist, who met with Alistair last Tuesday, was gone for the last week. She stuck her head in on Monday as they had been talking about Alistair in their Monday morning huddles and she was incredulous it was the same kid, she had to come see for herself! 

Over the past few days in PT, Alistair has done some unassisted sitting on the mat tables - at first for intervals of 16-20 seconds and has worked up some additional stamina! He has also sat in actual chairs, not wheel chairs...he did so today for school. 

He has done some assisted standing on the tilt table as well as working on pivot transfers where you have him stand while supporting him to move him from the bed to chair, etc. He likes standing as I think it feels good to be upright and stretch out some things. He is getting a lighter wheel chair tomorrow as he was able to endure most of the day in his wheelchair without a headrest...we did give it to him for a break during lunch. He was taken off of sternum precautions, so a whole new world has opened up for Alistair to be able to work on his strength and movements. His occupational therapist is excited for him to be able to use his arms more and bear weight or lift weight. As he works on more standing, he can use his arms for stability as well as use them to help sit up after rolling over. His OT has also been working with him on using his hands and fingers. Today she had him playing a game on the computer using a mouse. During the session, he was moving the arrow to start the game over. Instead, he chose a better game to play, but it required using the arrow keys instead of the mouse. She was a little concerned this might prove to be too difficult, but he managed just fine and went to town playing the game with little intervention from any of us. She told Seth later that it was pretty impressive. 

Alistair helping put his foot plates back on his chair

The one area that continues to be a challenge is speech. He pretty much has no articulation and cannot speak. He has a voice and sounds, but no words. He has become quite adept at using his alphabet board. When he spells stuff out he spells out whole sentences instead of trying to just get the point across with main words; which I think is pretty cool and truly illustrates how much his cognitive skills are intact. Today he was looking at some photos of the future Concorde designs and one was particularly fat and ungraceful looking. He asked for his board and spelled out to us, "That is one messed up Concorde!" This is one area that I am perplexed as how to feel about the future. I know speech issues can be overcome...we did it once before. But I don't know if this is a tone issue related to tense mouth muscles, or if this is truly starting over from square one. Only this time he knows all the words, just needs to relearn how to say them with his mouth. Time will tell.  

Petting Paddy in his favorite place!

In medical news, the wound nurse came to do a dressing change on his sternum incision and decided he didn't need the wound vac anymore. So Alistair is officially no longer tethered to any devices! He still needs a dressing change every few days, but his incision is healing nicely. Alistair continues to suffer off and on from a slightly swollen right arm. The cardiology team decided to have it dopplered to see if there was anything internally causing the issue. As it turns out, he has a small blood clot that is not completely blocking the flow of blood, but limiting it. So he has been put on Lovenox injections, which is now a source of anxiety two times a day. They put numbing cream on his skin about 20 minutes before they do it. I don't think he actually feels the poke, but the cream is a signal he is getting a shot and then frets about it. I think once this happens a few times and he realizes it doesn't actually hurt, he will calm down about it.

Bird's eye view of the helipad

Tonight Alistair was injected with Botox. This is a drug that rehab doctors have been using for years to help with tone and dystonia. Alistair has been suffering from both tone and dytonia and it is more debilitating for him in his arms than anywhere else. His right arm is always straight and he can't bend it easily himself. This is partially due to the shortening of his tricep muscle from not being used and also the tone in it causing it to always be flexed. The botox should help the tricep relax and allow Alistair to engage his biceps and deltoids as well as lower arm and wrist muscles. Similarly on his left arm, Alistair has very tight bicep and deltoid muscles that cause his arm to be bent most of the time and rise up over his head or near his face. Last night he started involuntarily jabbing himself in the eye with his thumb. So the botox he received in that arm should help him keep his arm down and be able to straighten out his arm. Originally they had talked about his calf muscles too, but have found through the standing he has been doing coupled with the night splinting on his left foot (and right soon, when that splint comes in), it is helping relax his leg muscles and allows him more fluid movement as well as better range of motion and stretches through his ankles and feet.  

Doing an assisted stand with Dad

The therapists all seem genuinely optimistic about Alistair and his progress. From what we can tell, everyone around here are straight talkers and don't extend themselves. Of course they want to celebrate any accomplishment as they are huge deals, but they don't gush about things. All of his therapists as well as the doctors are so excited about what Alistair has done in the last week. In fact, his PT made the comment that she needs to revise his goals he needs to meet to go home as Alistair met in a week what she thought he might be able to accomplish in a month. He is far from ready to go home, but he is making huge progress. He is a hard worker and has such a great attitude about it. He has not proven to be difficult, yet. I am sure there will be some push back at some point. Tomorrow is our next family conference, we are very curious as to what they have to say about Alistair and what they feel is in store for him.