Home For Good!

The past few days have been busy! Alistair had a couple of long days of therapy to pack in as much as they could before he left. Thursday morning, Seth and I had a very long meeting with the speech therapist, teacher and psychologist regarding school and the accommodations he will need once he returns. For a while he is going to need to have an academic assistant to stay with him all day. This person will be able to help him in the class by scribing for him, helping him grab the things he needs as far a papers, binders, etc and helping him with books (holding, turning pages). They will accompany him around school to make sure he is safe from falling. They will also help him in the bathroom with pulling up pants and other needs if required in there. Pretty much this person will be an extra set of hands for him until his own work better! Alistair won't be returning to school for another week, but we plan to make a few social visits next week. When he does return to school, it will be in an abbreviated way and we will work up to full days as he tolerates it. 

He got to go to class and conduct a science experiment with the rest of the students. He had a lot of fun and did really well in a class setting. I guess he told Scott, the teacher, that he was excited about being in the classroom with the other kids because he felt like he needed to practice before he goes back to his school! In the afternoon we had our last family conference. It was short and sweet and we got a strong feeling that everyone loves Alistair and is really sad, but very happy, to see him leave. They are going to miss him, for sure! Alistair finished out his day with an hour in the pool! He had so much fun and did really well. He was swimming with a kick board and wanted to practice his side breathing. Then he decided he wanted to dive for rings. He really enjoyed himself. He has been prescribed PT 2-3 times a week, so we have decided he will do twice a week with his PT, Brian, and once a week at the pool at Children's. It will be good to mix it up and it is a different kind of workout, which will be good for him!

The rest of Thursday included another therapy dog visit (top of the list!) and his teacher, Mrs. Harper, came to visit. She brought with her 3 posters, all signed by the 4th grade classes. So cool to see and Alistair enjoyed seeing them! He sent with her a letter he wrote to his class about his summer and what to expect when he gets back. She is going to read it to the class and then we are going to visit his class on Tuesday. Not sure what our visit will entail, but Alistair is interested in possibly doing a slide show and maybe showing off his scar! We will see! 

 Friday was the big day! He and Seth were up before 6 in anticipation! One of the last things on his "Flight Plan" to accomplish was "Pooping on Tim's Floor." It was a joke that started the first week we were at the hospital and turned into a a checklist item to do on the day he left (which required repeated explanation to doctors, nurses, visitors, etc. after seeing it listed on the door). Our friends Tim and Jason work in administration at Children's and the plan was to leave some fake poop in Tim's office with Jason's help to get in and do the deed. So they did it and then Tim and Jason sent a series of photos leading up to the discovery. Alistair was totally entertained by all of this and it was very cool of Tim and Jason to participate! Thanks Guys! 

Alistair had a full day of therapies, all crammed into the morning so he could leave by noon. Most of his therapies involved wrapping up loose ends and finishing testing so all the information could be sent to his outpatient therapists to continue his care. Our rental wheelchair (which we most likely won't need much) and his shower chair showed up before noon, which was awesome because a lot of times waiting for equipment holds up the discharge process. We had a lot of people come to say goodbye to Alistair (and us!). They are truly going to miss him. True to Alistair's nature, he charmed everyone he encountered at the hospital and they are sad, but happy, to see him leave! Of course we will visit when we are around because after spending almost two months with them, they want to see us again! 

 

We executed the "Plan for Today" and headed home via a stop at Kidd Valley for lunch. Once home, Alistair got in a little video game playing before we headed down the street to get Gillian from the bus stop. He walked all the way down and back and did a great job. Gillian got off the bus and ran over to hug Alistair, we didn't tell her he would be there! Then the other kids got off the bus and a majority of them came over to him, said Hi and hugged him! It was very sweet and totally unprompted by any parent! Just another example of why we love where we live!

Though we still have a way to go on this journey, we are really glad to be able to continue it at home. We would like to thank everyone at Children's for the last 46 days. The Rehab Nurses and staff are wonderful and took such care of Alistair. The doctors and therapists are one of a kind and really made our experience positive. But there is no place like home and seeing this place in the rear view mirror, knowing our next visits will be just a few hours at a time, took a huge weight off our shoulders. I think doing this twice now is more than plenty! 

Senioritis

2 more nights sleeping in this hospital. We are so looking forward to not sleeping in the hospital any longer. I feel myself wanting to rush through the day so it will be over and feeling annoyed about having to eat at the cafeteria again. We just have to get through Friday midday and then we are free, as Alistair would say!

Monday Alistair had his half day of therapies and then he and Seth came home. We ended up staying around the house for quite a while, playing video games, and then headed out to run some errands. We got home with groceries for dinner, put a kibosh on video games and sent the kids upstairs to play. Well lo and behold they found something to do with Legos together and then Gillian helped Alistair look at a Lego book. Truth be told, the video game playing has been very good for Alistair's arm and hand. It is beginning to bend easier and his hand function is starting to come back...I just hate having the video games on all the time! We had a nice BBQ'd dinner and cleaned up. Then Seth and Alistair headed back to the hospital.

Tuesday, Alistair had a fairly productive day. He decided in PT to try working with his lacrosse stick a little bit and did some stretching. Seth said he looked pretty good!  In OT he worked on a lot of fine motor skills with writing/drawing and picking up small stuff. He decided he wanted to go to the classroom for school and once there decided he wanted to join the other students in the hospital on Thursday for the first day of school at Children's. He is going to participate in the Science lesson! He also had a Recreation Therapy outing to Archie Mcphee. His one list item he has not completed yet while in rehab involves fake poop. I never really had a high opinion of Archie Mcphee before (AKA The Crap Store), but somehow my opinion dropped even more! Upon entering the store Alistair asked the clerk where the fake poop was. Quite indignantly the clerk said, "we don't sell fake poop here, we never have!" Oh, sorry, I didn't realize the fake eyeball laying in a pool of blood or the girl squirrel underpants (undies for a squirrel) was classier than fake poop. Whatever, we found something with which to improvise.

Alistair had a long day yesterday with his schedule and therapies. We recently bought him a Fitbit Charge to motivate him to walk and move more and hopefully build up strength and stamina. Yesterday was his best day to date. He walked down to almost the cafeteria and back, down to Starbucks and back by the entrance and walked his entire outing, not to mention to all his therapies. Then after dinner he and I took a walk up to the rooftop garden. He was tired last night and then also today...partly due to his busy day yesterday and partly due to his not sleeping great last night.

Today we had a bit of a quieter day, but it was peppered with a few exciting things! First this morning he had his swallow study with hopes of passing on to regular liquids and not having to thicken anything anymore. It was scheduled for an hour, 10 minutes into it after more or less chugging two cups of liquid with no issues, she was convinced that he passed with flying colors! He can drink whatever he wants! Yee-haw! He came back and told everyone on the floor who would listen! They were so excited for him. Because he can do regular liquids now and because his incision has healed, he was cleared to go to the pool. He is super excited for PT tomorrow as it will be 1 hour in the pool!! We also worked on transferring into the Pilot today. He did great with a foot stool and seemed pretty happy about being in one of our cars. Nana and Papa were nice enough to let us use their car for a while, but I think he enjoyed sitting in HIS seat! Tomorrow or Friday we will work on transferring into the Durango now that we have running boards on it. He is really looking forward to sitting in his seat in the new car! Although if he is anything like Gillian, the novelty of sitting in the third row easily will trump the captains chair real fast!

Heading to the nurses station to spread the good news!

                                      Cheers to regular liquids!                                        

Alistair had another canine visitor today, Allie. We have seen her before. She is a sweet golden and much like all the other dogs who visit Alistair, find his room to be quite comfy and cozy! I think he will be visited by one, maybe two more dogs before he leaves. He sure loves having the therapy dogs and gets disappointed when he misses them...more than missing athletes!!

Tomorrow in addition to his usual therapies, we start having our wrap-up meetings to go over discharge info for everything from equipment to meds to outpatient therapies to our next appointment here to stretches to school and everything in between! Lots of info, but because we are here everyday, we have lots of experience doing and seeing everything and that makes our teaching times shorter! We will have a lot of work to do ourselves once at home and I am sure his outpatient therapists will have their own list of stretches and other homework they will want us to do. I am almost overwhelmed with all the running around to various appointments and home workouts we will have to do. Keeping track of where I am when will be very important. I just keep focusing on the fact that we will all be starting from under the same roof and we will be eating all of our meals together again. The rest of it will fall into place.

While settling into bed, Alistair hit me with a major teary-eyed statement...I wish you guys could feel the pain I feel. Oh boy, what a loaded statement. It is true, we don't know the pain he is feeling - physically or emotionally. I told him that's true but if we could, we would take it all on for him in a heartbeat. When he says stuff like that or he struggles with something simple like stabbing a bite of food or complains about his arm not doing what it should be doing, I get sad and super pissed. Every once in a while the angry feelings rear their ugly head and I think about the "no fairs" and the "why hims." It makes me really sad to look at photos of Alistair, especially the ones so close to his surgery. I just look at him and think, "if we only knew what would happen." The ones that really get me are the ones we took morning of when we were on our way to check in and get ready. Huge feelings of guilt bubble up, I can barely look at those photos. I am glad he can't feel the pain that we feel. I hate that he has to have this struggle and that we can't do anything to make it instantly better. It will get better and it has gotten better way faster than anyone had hoped or believed. That is good and I have faith that this will all be behind us soon.     

A Little Taste of Home

Friday was a pretty typical day around Rehab. We had our usual therapies with a walking trip down to Starbucks on the third floor and a card game thrown in by Recreation Therapy. Alistair is getting better and better in his walking; very stable and balanced. Grandma came midday to stay with Alistair overnight while we went home to get the house ready for him to come home for the night! We spent the evening working on installing banisters on the other side of our stairs so Alistair had lots of support to go up and down. My brother came over and he and Seth ran to Home Depot and then came home and worked. We took a break for dinner and to watch a bit of the UW game and then finished up! They definitely came in handy over the weekend, so it was good we got them in! Thanks! Jeff!!

Saturday morning we arrived an hour before he was to be done with therapies so we could maximize the time we could take him home. They had decided to run an EKG on him as his pulse has been a bit higher the past few days. The EKG was done right after PT and then we had to wait around to find out the information. An hour later, the rehab attending finally went and tracked down the cardiology attending to find out the results. They said they would also like to get an echo, but could wait to do it until we got back as they didn't want to intrude on our overnight pass any longer. We were just sent with the instructions to not be super active (easy) and keep an eye out for symptoms associated with a racing pulse. We had no issues over the weekend. They were planning to do all this stuff this week before his discharge anyway, so we will get the echo done and go from there sometime this week.

We headed home via stopping to pick-up lunch from Ranch Drive-In! Yum! Alistair got around the house wonderfully! He walked around, sat down on furniture and even got on the floor with little to no assistance. The real work was navigating the stairs and of course we were right there to help him up and down. He enjoyed being able to get to his room. He spent much of his time home playing his new racing game. Jeff brought a steering wheel with foot pedals and it proved to be quite successful to use for Alistair. We had also brought home the adapted Xbox remote, which he played Minecraft on with his buddy Logan who came to visit. 

Making pizza!

We had lots of visitors Saturday and Sunday. Many neighbors popped by to say Hi, a few family members came by for a visit and a few of Alistair's friends came to hangout with him. We also went for a walk around the short block in our neighborhood via the park. It took him quite a while to do it with lots of rests along the way. When he is home, we will be walking a lot to build up that stamina. He will have lots of outpatient therapies as well, but we will also work on stuff here!

Gillian seemed to really enjoy having Alistair home. She was wherever he was and did anything for him when he needed help. He would call for help with something downstairs and before we could answer, she would say, "coming!" and run down to see what he needed. They had wanted to have a slumber party in his room with her sleeping on the top bunk. We thought it might not be a restful night for her as we suspected he may not sleep great and didn't want to disturb her. She was a little disappointed, but I think she understood, especially when we told her the next morning how much he was up! Alistair slept similarly to how he does at the hospital, about every two hours he wakes and needs something. But this time it was also too dark and quiet for him. After 2 1/2 months of sleeping in a hospital, I totally get it and was prepared for him to feel that way. Luckily we have a night light available in his room and we used it. We also have an Alistair Monitor (not baby!) still and had it on. It has worked for almost 10 years now and Saturday night is when it decided to not anymore. Alistair came wandering into our room about 3 hours after he went to bed and was mad at us for not coming when he called and called. We felt bad but at the same time were totally excited he got himself out of bed and walked down to our room all by himself. That was lost on him at that moment (but he did mention it later and thought it was cool!). So the rest of the night we had our doors cracked and heard him when he called. Thankfully Halie has a monitor she was just going to get rid of that still works...so we will have a different Alistair monitor when he comes home!

Seth took Alistair back to the hospital last evening, he had to be back by 8pm. It's pretty quite in the unit right now, only 5 patients! I guess they really missed having Alistair around! Today is a short day, they treat holidays like Saturdays. So has half the therapies and then we are going out. Not sure the plan for the day, but no need to sit around the hospital if we don't have to! 

Having Alistair around for 20 hours was wonderful. It felt normal and comfortable and nice to all be under one roof. There is definitely more work involved with having him move around the house, but that will get easier as he gets stronger. We also have to remember he gets tired easier and have to plan the things we do around giving him time to rest. We will have to ease back into our crazy weekends slowly as we aren't great at doing nothing! This hospital stay journey is about to end. 63 days inpatient. A whole new journey is about to start, but at least we will all be under one roof and in the comforts of our home, neighborhood and city! Seattle Children's has been great, truly, and we are grateful we have this extraordinary institution in our backyard. But it time to go home!

Movin' and Shakin'

Alistair's nurse last night told Seth she had never seen anyone progress as quickly as Alistair has. He takes a skill and runs with it. Anything he has begun to do, he looks like he has been doing for weeks in a matter of days! This kid is motivated and I also think he just knows what he needs to do and does it because it beats sitting around! Today we started working on stairs and he did great. We went into the stairwell and the PT gave him some instructions and away they went. There were 11 stairs. He went up and down them 3 times. He was tired after the 3rd time, but he looked good! He is getting an overnight pass this weekend. We will bring him home after therapies on Saturday and not come back until Sunday evening. Our house has lots of stairs, so it is definitely a necessity for him to work on them now. We will need to make sure to accompany him up and down them, but the fact that he can climb them at all is awesome! My brother is coming over tomorrow to help Seth install a handrail along the other side of both sets of stairs so Alistair has options to go up and down. 

 Alistair had some very special visitors today. His preschool teachers Mrs. Bowers and Mrs. O came to see him. They brought him a very special handmade story quilt as well as some donuts from Countryside Donuts (YUM!) and a coffee card for the parents (Thank You!!). They visited for quite a long time and we had a nice conversation. They are always so wonderful to talk to and spend time with and I know Alistair enjoyed having them come! The nurses were all so surprised that his PRESCHOOL teachers came (that was like, 5 years ago!!) and thought it was cool! 

Alistair also had a canine visitor, Hank. He has been here before. Alistair is on the top priority list for therapy dogs. I think we have seen all but one of the dogs, multiple times. He loves it! 

The rehab unit has become quite empty as of late. Alistair's buddy Monte discharged a few weeks ago. Then yesterday Alex and Daniel discharged, as well an older kid who turned out to be a lacrosse player from Woodinville! Alistair was a little bummed that Daniel was leaving. But yesterday, in typical Alistair fashion, he was telling Daniel goodbye and gave him all kinds of inspiring words of encouragement for the remainder of his healing. We exchanged contact information - mostly to get Xbox handles for online gaming. Monte came to visit yesterday to tell Daniel goodbye too. The 3 boys posed for a photo and it was so cool to see Monte AND Alistair standing next to Daniel instead of Monte standing between 2 kids in wheelchairs like last time!

Brian, one of the Recreational Therapists, came and got Alistair during his downtime to see if he wanted to play video games. He brought out an adapted Xbox controller that is larger and easier for someone with gripping issues to use. So they went and hung out in the day room playing video games until lunch! Brian was helping Alistair with the regular controller and then switching to the larger one to give him a break. Seth and Alistair played again later too. I am surprised we didn't tonight, but we did watch the M's win and some of the Seahawks game!

In the midst of everything else, Gillian started 1st grade. She had a great first day of school, loves her teacher and has one of her best buddies as well as neighbor, Kate, in her class. Gillian is amazing. Amid all that has occurred this summer and her being shifted to here there and everywhere and not getting to spend as much time with us as she should, her resiliency is unwavered. She has maintained such a happy and positive demeanor. Her love for her brother is very obvious in her genuine concern for his well-being as well as her excitement about the things he has done. She was so happy when I told her he walked the other day. Seth told her tonight he is coming home for the night this weekend and she was super excited. She is this bright, shiny sprite who continues to be happy and keeps us smiling. 

Things are looking up all over. Alistair has a discharge date of September 11th, one week from tomorrow. If it holds, we will have been in the hospital a total of 63 days...17 days at Mayo and 46 days at Children's. The crazy thing is that the days at Mayo seemed much longer than the days at Children's. Once he is home, he will be going to lots of outpatient therapies to continue to work on everything. He still has a long road ahead of him to get back to square one. But being able to be home and operate in "normal" life will only allow for his progress to continue to move in a steep upward trajectory. As mentioned up above, Alistair will be coming home this weekend for an overnight pass and trial run for the following week. We don't have much in the way of plans other than to enjoy being home and probably playing some video games. Give us a call or email if you want to drop by!  

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!