Ding, Dong the Shots are Gone!

The best news that came out of Wednesday's appointments was Alistair's blood clot is gone and therefore he doesn't need to continue his twice a day shots! Yay for everyone! Now his poor banana-bruise legs can HEAL! We had an ice cream cake appropriately decorated to celebrate the occasion!

Alistair had a great visit and check-up. All his doctors and various therapists couldn't say enough great things about how he is doing and how great he looks since they saw him last. The physical therapist said he has little to no tone left in his legs, has improved strength and range and seems to be moving quite well! The occupational therapist also was pleased with his range and movement changes since he left but also recognizes that his fine motor skills are slow to return. Although he is able to move his right arm and can reach and bend and stretch, he is still experiencing significant tone throughout his arm which makes it slower and creates tension in working the fine motor movements. She gave us some ideas as to how to work with him at home in addition to his outpatient appointments.

Wednesday was a check-up day for all the kids who discharged around the same time. Alistair was over the moon to see Daniel when we came out of our PT appointment. He ran over and hugged him. From talking to his mom, they had plans to meet up with Monte and his family for lunch at U Village and invited us to tag along. So we did and the dudes were reunited! They have all come a long way. It was fun to see them together! 

Dr. Apkon was very happy to see Alistair and was extremely pleased with the progress he has made. She has suggested we see a neurologist who specializes in movement disorders to see if she has any thoughts on Alistair's face and the tone he continues to experience in his lower jaw. If it wasn't for the tightness through his jaw, he most likely wouldn't require speech therapy! Neurology has different medications he might be able to try to combat this. 

It was a very long day at Children's, but it was fun to see everyone! We went and visited the unit and saw many of the nurses we had. We saw Betsy, Alistair's OT inpatient, and Alistair invited himself (and us) to have dinner at her house sometime! She lives on a house boat and has a golden named Lily (who is a therapy dog at SCH, visited Alistair many times!). She said they would love to have us! :) It was a very surreal feeling to be there and around everyone. It was like a college reunion. You see all these people you saw every day, sometimes at the 3 in the morning, sometimes before you were out of your pajamas and eating breakfast, or throughout the day between appointments, and now are catching up on what has been going on since you left. 

But at the end of the day...we got to drive HOME! :)

Quickie!

I see my link for the blog on my toolbar on my screen and I think, "I really need to do an update!" And then something else comes up and it doesn't happen. This update will be super short. Today we had a meeting to go over the evaluations school did with Alistair in order to move forward with setting up an IEP (Invidualized Education Plan). Nothing was a surprise to us in the needs portion of the evaluation...he definitialy needs his Para-Educator to help him in class and around school with actions using his hands and arms. He needs speech, occupational and physical therapies at school and will qualify for them. The thing that was more suprising, but pleasantly so, was that socially, emotionally, mentally and cognitively he is soaring! The psychologist met with him a few times and said he is aware of his limitations and is not afraid to advocate for himself, he has a very positive outlook on things and seems to be happy! His academics have not been affected; he participates in group learning in class, he is understanding new concepts and retaining information in math and has great reading comprehension and retention. So, so glad to hear! 

Tomorrow Alistair has his BIG check-up appointment with Rehab at Children's. We will be there ALL day and he will see all the therapists, Dr. Apkon and the psychologist. It will be interesting getting their perspective on things since they haven't seen him at all in 7 1/2 weeks! I will make sure to give a full report in the next few days on all that was discussed!

School Jog-A-Thon - Alistair did 5 or 6 laps and even did some jogging!

Snow White and the Zombie - Alistair wasn't going to dress up this year and stayed home to hand our candy with Seth. At the last minute, he decided to answer the door as a zombie and got a shirt that unbuttoned! People thought it was cool, some were a little surpirsed his scar was real!

Resuming Life!

Sorry for the delay in reporting, our lives are SO incredibly busy during the week and the weekends have been filled with a combination of relaxing and fun things.

Alistair is doing well. He is enjoying being back at school. He is in his fourth week now. He is staying all day with no problems and participating in his therapies after school with gusto and determination. His therapists all make comments about how he is such a hard worker. Everyone who sees him says he looks better, "even in the short time since I saw him last." It is hard for us to see that since we see him all the time. From our side, things seem to be getting better slowly and in the meantime we are dealing with the side effects of his trauma. Everything is harder and messier and slower. Alistair needs help with just about everything. Nothing is done without one of us involved. It makes everything take longer. Sometimes it is fine, sometimes it is frustrating and stressful. Patience is the key. But then he does stuff like put together almost an entire Lego Race Car without much help. That kind of stuff is nice to see!

Everyone always asks how we are doing and I usually say fine, hanging in there. Usually I do feel that way, sometimes I just don't want to go into it. It's hard to really pinpoint how we are doing. We are tired, we are stressed out, we are trying to stay positive and be a cheerleader for Alistair while trying to manage his emotional state and keep him from getting too discouraged. We are also trying to manage Gillian's emotional state and not make her feel less important or left out. We are trying to live some semblance of a normal life with the normal things we used to do in the evenings and the weekends. We are sad and we are pissed, especially when we see things like his Smarter Balance test scores and how he scored Above Average on Reading and Writing and Average and Above Average on Math and wonder if it would be the same now or if he has been screwed over on that too. Some days we have the Dory way of thinking, "Just Keep Swimming" and other days we have the "F This" way of thinking. But all of that waxes and wanes...we have good days and bad days.

This past weekend marked a month since we came home from the hospital. It is certainly nice to be home, it is great to be able to cook and eat regular food again and it is nice to not be driving back and forth to Children's and splitting our time. When we first got home it was blissful and we were writhing in joy over the fact that we were in our home. Everything else was secondary. Now that we have been here and are reacquainted with our Bothell selves, it's just insanity and busy, busy. I figured it would be the case when we found out how much therapy he would still require once he was home. Add that to Gillian's gymnastics, squeezing in homework and reading logs and finding a few minutes to eat dinner together and we are skidding into bedtime at 8:30! Never a dull moment around here! 

Alistair is enjoying life and getting out and doing stuff. Nothing has been too much for him, he hasn't let anything stand in his way of going out. He went on a field trip with his class to a corn maze, we went to the Kangaroo Outback Farm in Arlington where he fed a alpaca with his lips (see above!), he went to Brickcon and the last Mariner's game of the season with Seth...all on the same day! And last weekend we resumed one of our most favorite past times...camping! Alistair loves getting out camping and was beyond super bummed to learn that we had missed so many trips this summer. He did great! He walked to the beach a few times, ran around in the woods with his cousins and even was able to use his controller for his R/C Jeep with two hands! He has yet to resume his campfire assistant duties...but that will come! We really enjoyed being out doing something normal again too. Except for the medicine and shots, I almost forgot about this summer! 

Back to School

Monday marked the first day of fourth grade for Alistair! Only missing about 2 weeks of school isn't too bad. I thought for sure it would be much more back at the beginning of August! We had an early morning meeting with his principal, school nurse, teacher, school psychologist and the 3 therapists (OT, PT, & Speech) in regards to getting an IEP going for him. Meanwhile my Dad had come up the night before and was here to get the kids ready and off to the bus stop. Alistair wanted to ride the bus to school. The first step is a doozy and he needs a bit of a boost. But otherwise he handled it just fine. My Dad said Alistair told him he was nervous, but I think it had to do more with having a helper at school and how that would be perceived rather than just school in general.

After our meeting we met Dora, his paraeducator, and gave her a quick rundown on Alistair and his needs. She is very nice and seemed excited to meet him! As she headed down to the classroom to meet the teacher, we met the bus at school and helped Alistair off. We asked him if he wanted us to walk him to his classroom and he said that he wanted to line up with the rest of his class and walk down when it was time. Ok with us! So we walked him to his line, his classmates were pretty excited to see him and were even more excited when we told them he was there for school and not just visiting again! We told him goodbye and left.

I had to pick him up a bit early for his cardiology appointment. Dora walked him up, which was great as I could get a report about how it went! She said he did wonderfully. He was attentive in class, asked questions, participated in class discussions and did really well with having to dictate to her while she wrote his answers. She said he got around school just fine, but could tell as the day wore on that he got tired (lots of stairs!). She said he was noticeable less spunky in the afternoon than he was in the morning! Mrs. Harper sent me an email later and also remarked how great he did. The one piece of information nobody had a handle on was how to predict how Alistair would do in the classroom. It was a huge unknown since he didn't have many opportunities to practice prior to returning to school. But he seemed to do fine! He also remarked that Dora was, "not that bad!" In fact he chose her over me to accompany him on his field trip tomorrow. Fine with me, I applaud the independence and some space from us who he has been with non-stop since July 8th!

Tuesday he had another great day. Dora remarked that he has such a great sense of humor and has lots of interesting things to say! I had to pick him early for occupational therapy. After an hour of therapy, his therapist brought him out and made the remark that he is one of the hardest working kids she has met...this was her first day meeting him. She said that when kids have one arm and hand more dominate than the other, they tend to favor it and it is a chore to get them to work on the other. Alistair has not voiced much about his right arm and hand, but I know he is motivated to regain his range of motion and use as he is naturally right handed. He can do some things with his left and his left arm is much easier for him to move and manipulate. But this is just another example of Alistair knowing he has work to do and does it!

Wednesday was a shorter day, but he got to be there the whole day as his therapy wasn't until after school. He rode the bus home for the first time! I think he enjoyed getting do that! He started giving me some pushback on having to go to therapy and not getting a break after school. I had to explain to him that even though he is well enough to not need every therapy everyday, he still needs therapy a few times a week. He then complained to me about missing a lesson in social studies ("the most fun of the subjects to study!!"). I told him I am trying to not have to take him out of school too early too often so he doesn't miss much, which means having something after school everyday! Makes for a crazy week. It won't be forever. 

Alistair has been tired in the evenings. We caught a glimpse of grouchy Alistair Monday  and Wednesday nights, something we have not seen since probably June! He has been more and more active in his steps. This weekend he did a lot of walking. Saturday he went with Grandma and Grandpa and Gillian to Seattle. They went to the Seattle Team Store and then down to the Museum of Flight. We met them for dinner afterward and took the kids home. Sunday we joined our friends who invited us to the Boeing Friends and Family Day at the Renton 737 plant. He walked over 10,000 steps and over 4 miles that day! Needless to say he was exhausted!

Alistair is doing great and hanging in there with everything. It will be interesting as we settle into our new routines and schedule how he handles it. We have a therapy every day of the week except Sunday. He will also have therapy during the day at school. My main goal was to maximize his time at school as I think it will be important for him to be able to participate as much as possible to keep up and not fall behind. Plus it just helps to continue to add to his stamina and keep his mind active. Rest is also helpful for helping his brain heal and his sleeping is getting better. The wakings are beginning to subside a bit, but we still go in a few times every night. We are getting there!

Life Got Busy

In keeping up with recent news, nurses are awesome and deserve every shred of grattitude you can give them! This has become even more evident as we have returned home and taken over full care and management of Alistair, his medications and his therapies. The weekend was great. We relaxed, we played, we did some normal every day things like Costco and grocery shopping, we cooked good food and ate well and we saw friends and family in a relaxed environment with comfortable seating and space! Then the week started and we all hit the ground running!

This week has been all about getting Alistair established with his new therapists as well getting used to new schedules and just life in general outside of the hospital. We had back to back speech and OT therapy sessions on Monday. Tuesday we went and visited Alistair's classroom and friends at school as well as saw some of his former teachers and the office staff. Wednesday he went and saw Brian, his Physical Therapist, and worked with him for an hour. Thursday he had a check-up with his pediatrician and Friday had another PT session. Monday he has a check-up with his cardiologist. Starting next week he will begin a regular schedule of Speech on Monday, OT on Tues and Thurs, PT on Wed and Sat. He will eventually also receive these services at school. In amongst all of this will be Gillian wth Gymnastics and Girl Scouts and me fitting in PTA duties as I can. Phew!

Alistair is doing great being home. He has really taken the initiative to be independent. He tries to do things on his own before we help him. He pretty much does the stairs on his own, usually needing some help on the last one or two. He is still having some issues sleeping soundly all night. We are still getting up with him 2-4 times a night. He seems less anxious about sleeping at home and being in his quiet and dark room. It is more about being able to pull up covers when he kicks them off, getting over on his side (especially on the side with his cast he wears at night) or occasionally being disoriented after having a vivid dream. He is eating well, especially since he is no longer having to eat hospital food. He isn't eating a lot. I think he gets frustrated with not being able to stab or scoop his food well and finds it easier to stop eating than to keep going. He says that's not the case, but I am not so sure. That being said, he doesn't ask for snacks or complains about being hungry between meals. Perhaps his appetitie is smaller now, which isn't a bad thing! I am sure as he gets more active he will be more hungry. 

Since Gillian is getting up and getting ready to go to school in the morning, we all do. Alistair is keeping the same schedule as her as far as having breakfast and being dressed and ready to go to the bus since he will be doing this soon. He has been walking down to the bus and back every morning and again in the afternoon when we have been here. His pace is beginning to increase a bit, which is nice. Walking with Alistair makes me think of walking down the aisle as a bridesmaid and trying in vain to step in time to the S-L-O-W beat! I try to think about Water Music when we walk to help me walk slower and not rush him! His Fitbit has been great for him, I think he really likes being able to see how far he has walked every day and how many steps he is taking. His biggest day so far was Monday with ~8600 steps and 2.87 miles! He fell asleep early that night!

School will begin for him on Monday. When we were there Tuesday, I briefly met with Mr. Wellington and the school psychologist about getting Alistair back and what we need to do as far as acoomodations/policies/procedures. We have a meeting with the whole team Monday morning to start the ball rolling to set-up an IEP. He will return to school on a 504 to bridge the gap until the IEP is in place and that will provide him with the services he needs in the meantime. I think once he is in school, more stuff will start to fall into place for Alistair. 

People keep asking me and Seth how we are doing. I think we are doing well, considering everything going on. We are tired, sleep is not exactly sound. We are busy, which is normal for us, but it is harder having to consider Alistair's needs and plan for medicine timing and just getting around in general. We both felt down or blah on Monday and in talking about it later came to the conclusion that being home is great but it is hard and sad. Being at the hospital was extremely positive because he arrived in the state he did and just improved and got better every day. They didn't know him before, there was no history to which to compare. But at home, as happy as we are about the continued improvements, it is hard to see him struggle with things we know he could do at the end of June before we left for Minnesota. And of course there are constant reminders all over the house in the form of photos showing Alistair doing things just fine or providing a memory of some activity we did in the past that might be difficult to do right now. 

After my last post, many people made comments regarding the end of the blog! Not so! I intend to continue to do blog posts, they just may not be as frequent. The title of this particular post is extremely apt! And because it was so busy, there were no photos snapped! 

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.