Quiet Day

Today was not as hard as Wednesday, but was definitely not as good as yesterday. Alistair has been sad a lot today, like tears and crying. The other day seemed more like frustration where as today just seemed sad. But he also has developed muscle soreness in his neck as you can see him holding it to the right side. Part of that is ongoing, part of that is from more use. Yesterday he demonstrated quite a bit of head control and I am sure his neck muscles are sore! You can feel the tightness in his shoulders. So I think this was causing him quite a bit of discomfort and the only way to express it was to cry.

We did not get into the rehab unit today. The insurance company, who have been great to work with thus far, were the ones to drop the ball. Apparently they felt that his case needed an additional physician to review the paperwork. It's total B.S. if you ask me because anyone with half a brain can see, whether in person or on paper, that this kid NEEDS to be in rehab. The care teams here are all on the same page and were even talking about just moving him to a rehab room in anticipation of his impending approval just to free up a surgery unit room. But all those talks stalled this afternoon and we are in our same room still. There is a chance he could move tomorrow, but I am not going to hold my breath. At this point it is just frustrations over caring for him. The nurses on this floor have been great and really, really try to accommodate caring for him in a rehab kind of way with our help, but they aren't trained to do this. Alistair needs to be encouraged to do stuff and if it is too hard or cumbersome, he might not keep it up. Hopefully we don't have to wait too much longer. But it is also maddening that we got Alistair here with the process started before we left and we will have spent a week sitting in an acute care room waiting. 

I had a good cry today. It helped. I really haven't allowed myself to really breakdown yet, mostly because I am with Alistair and don't want to appear unsupportive or give him cause for concern. But after having cried, dealing with everything this afternoon was a bit more easy. This is all unfair and I want to run around asking "why?" But it doesn't help anything or anyone, I won't get an answer and I don't know that I would want one if there was one. I like to pass the time looking at social media so I feel like I am at least keeping up in the world I am not currently a part of. It is nice to be in the loop on stuff, but at the same time it makes me mad, jealous and sad that we aren't doing the things everyone else is doing. Of course our summer would have been a bit more low-key with Alistair recovering from heart surgery, but we would have still done stuff. I ran out to get some lunch for Seth and I, away from the hospital, and I just felt sick coming back knowing this is our reality for a while. 

I have been talking to Alistair about having visitors. I think for the most part he is fine with family or our friends (adults), but he told me no to having his friends come. I think this will change in time, but right now we think he is afraid his friends won't accept him. We know that isn't true, but I think until he has made more progress and is feeling better about himself, he may not want to see his friends. So stayed tuned and be patient! He just needs time, which seems to be a theme.  

A Positive Day

Alistair had a great day yesterday. After spending much of Wednesday emotional and uncomfortably tremoring and having a visit from Neurology who tweaked his medication, he spent Thursday relaxed, able to better participate in therapy and actually spent some time smiling and laughing. We ended up having one on one nursing yesterday and last night, so Seth and I were able to sleep at home again. I will feel better about this as we do it more and he has more successful nights. He did well last night and only had a few minimal wakings. We are trying to reestablish his circadian rhythms after all the moving and time zones, etc. I think he is doing fairly well with this and seems to be back to a decent one for now. He usually crashes around 7:30-8:00, wakes around 6 and then sleeps on and off until 7. We are trying to get him up by 7 so we can start the morning routine...which includes cartoons! 

His occupational therapist came in around 8:30 to work with him on eating breakfast. He is still having a bit of an issue with involuntary arm movements and she did great job helping him establish control. We use the term calm body and that helps him to focus his mind to bring his arm down to a neutral position and not be in the way! So they worked on eating oatmeal and bringing the spoon to his mouth. He was doing a great job with this. Then the physical therapist came in with a tilt table. We got him on it and eventually brought him up to about the same degree as he had done last at Mayo. He seemed a bit nervous, like he wanted to be done. We asked him if he wanted to go back down and he said, "no!" That was a great thing to hear that he wanted to keep working! After we were done on the table, we got him into his wheel chair. Eventually we took him up to the roof to see the Blue Angels. They weren't flying over the hospital anymore, but we saw a few bank around at the end of the lake. We will have a few more opportunities to see them over the next few days I am sure!

Lunch was a rousing success. He didn't get a chance to eat a ton of his breakfast, so I think he was hungry! After lunch his speech therapist came and we played a game and then worked on some non verbal communication skills to ease frustrations with communicating as we work toward more verbal skills. A couple of rehab doctors came in and gave him an exam and spoke with us about his impending admittance into the in-patient program. It is a fine dance of acceptance by them and by the insurance. Right now we are waiting for the word from insurance, but Seth is keeping them working and moving them forward. We should know this morning and are hoping to be moving over there by lunch time. If it doesn't happen today, it won't happen until Monday. We would prefer it happen today for a number of reason but mostly because he will probably need a day or two to recover from the transition again and the weekends in in-patient are less scheduled and busy than the weekdays. 

The rest of the day included a visit from Papa and Nana as well as Uncle Ethan. We all took a stroll with Alistair and showed them the rooftop garden. We are going to need to find a few others places to visit...maybe today we will explore a bit more. When everyone left, we came back to the room for dinner and watching cartoons. Alistair loves Teen Titans Go! and our friend Jason, whose kids also love it (as does Jason!), went and bought Alistair a few videos of the show as well as a couple of others. It is funny and he smiles and laughs and it is so awesome to see and hear. We also had a few funny things occur yesterday and were making jokes about, which caused him to have some genuine bouts of belly laughing...almost akin to how Alistair laughs when he really gets going. If you have ever been with Alistair when he has been struck by a serious case of laughing, it is great! His response time to a funny thing and him laughing is almost instant now, which is awesome to see. 

We tucked him in before we left last night. We never told him we weren't staying, but he read between the lines and tried to get upset. We assured him he was safe and reminded him that at home he sleeps alone in his room (but that his nurse, who he had the night before, would be with him). We also told him all the rooms around him were full of kids who were also sleeping alone (a bit of a lie!) and compared it to being at camp! Hopefully camp is more fun, but I think he got the point. He seemed to be okay with that, either that or he so tired and couldn't stay awake another second. Either way, he went to sleep and we slipped out. 

We were remarking last night about our day. I never had an emotional moment where I had to choke back tears or needed to take a minute to compose myself and Seth said he never caught himself having to talk himself into being positive and felt genuinely optimistic about the day. We both went home feeling pretty good about the day. Being home brings on a whole different slew of emotions though and having to get in the car to drive back to the hospital this morning brought back the heavy feeling in my chest and the emotions floating around ready to emerge knowing this is reality for a while. 

Gillian is coming home Saturday for a night. We haven't SEEN her in person since the 20th. She is currently staying with Ethan and Jen and spending time with her cousins. She is having a blast! My parents are bringing her up to us and then will be spending the night with Alistair for us so we can spend some quality time with our daughter. Eventually she will need to come home and be part of the process. But until we can get scheduled and situated, it would be more stress than anything for us and for her. 

Keep your fingers crossed that we end the day in our new room on the in-patient rehab floor. 

Getting Real

Yesterday was a very busy day, lots of people in and out all day long. Of course Alistair is a new patient and everyone needs to get to know him and make plans for care, etc. It wasn't until mid-afternoon that we finally had some time to ourselves. Of course at that point, Seth and I got very overwhelmed with everything and needed some time to process. Luckily Papa was here to sit watch while we went for a walk.

I began this post this morning. Thanks to a very understanding nurse last night, she arranged for us to be able to go home and sleep in our own bed. We slept really well, but just not long enough. I think it has made a slight difference in dealing with stuff today. I think until we get on some sort of schedule, my posts will not be as regular as I had been. We pretty much went home almost every night when we were in Minnesota. Now that we are here, he cannot be left alone at night. So we have to be here with him. He also needs a lot of help during the day, which doesn't afford us much time to do much else. Thus the inability to find time to write!

In speaking to a few people and doing some soul searching, I have decided to take a moment to unpretty the picture. I have tried to be very upbeat and paint stuff with a rose-colored hue to appear positive. But in doing so, I believe I have mislead people into thinking Alistair is better than he is. Alistair has a brain injury that affects his muscle control. He is completely dependent on us or his nurses to do everything. He tries to feed himself, but he lacks the muscle control, without help, to get the utensil to his mouth. He is on a honey thick liquid and pureed diet because his swallowing skills need to be strengthened again. He tries to communicate and sometimes can just about clearly get the words out, but most of the time his words are hard to understand because his annunciation is lacking due to muscle weakness. He cannot walk, he can bear some weight on his feet when he is being transferred. He cannot sit-up nor can he hold his head up for very long. He has to wear briefs because he cannot get himself to the toilet. He can't always communicate he has to go (but he is getting better about this and certainly doesn't enjoy it!). He is suffering from tremors which get worse when he is concentrating to do something like talk or reach. He has become very aware of himself and has begun to get very upset and cry a lot, especially when he is struggling with trying to do something. He is not happy about what has become of himself. He told us yesterday that this is all very sad.

With all that being said, here are some good things. Alistair is beginning to show emotions and feelings. He is crying and sad, but we have witnessed quite a few moments now where he has smiled and laughed...mostly at cartoons. Last week he was very flat and didn't seem to show any emotion and express emotion. His tremors have worsened, but I think this is due to him trying to use his muscles more and communicate. His memory is intact and he has been making new memories. He also can read, although he is not up to reading books or anything yet.  

We have had a few tours of the in-patient rehab facility. It will be really good for him. It will be very scheduled with lots of therapies and activities. We will need to be fairly involved in his rehab. But we will also be able to get on a schedule and know what to expect and plan around it. He will get better. He needs to regain his strength; he has been laying in bed for 19 days and has lost a majority of his strength. Once he gets stronger, he should be able to overcome the tremors as he will be able to push past it. We have a very long road ahead of us. 

My intention in sharing this information is more for those who want to come visit. If you know Alistair at all, it is very hard to see him in this condition. I can guarantee that those who have come so far, all family to this point, have been slightly shocked. So I hope that this will provide some cushion. I also think that seeing friends might be okay or it could be hard. His friend Sully visited him in Minnesota and it went okay. Sully brought his iPad and played it with Alistair or Alistair watched him play it. Conversation is not a huge part of the visit! Maybe I will ask Alistair tomorrow about having friends visit and see how he feels about it. I am not sure we are ready to open the flood gates to visitors quite yet. We are still grappling with all of this and taking it one day at a time. 

Home Sweet Home

Yesterday was a whirlwind of activity. But it all ended with us at Seattle Children's, back on home turf. It was so nice to step off the plane in Seattle. Even when we touched down in rainy, cool Great Falls, MT, we both remarked that the amount of stress we have been carrying was already noticeably less.We are far from no stress, but you know what I mean!

Seth stayed with Alistair overnight and I came in to relieve him in the morning so he could get back to the house and get showered and packed to leave. Alistair slept pretty well over the night. This sleeping through the night stuff, finally, is so great for him! The morning was a whirlwind of doctors coming in to do one last exam and do their sign off for transport. They would come in and say, "So today might be the day?" Or "So there is a chance you might be leaving today?" And I would reply, "no, we are leaving today, the airplane is en route!" You would have been hard pressed to convince us we needed to stay longer!

Once the acrivity settled down, we took Alistair outside to see Grandma, Grandpa, Aunt BJ and Riley! Grandma and Grandpa were getting ready to hit the road and wanted to say goodbye for a few days and we thought Alistair would enjoy seeing Riley...I think he did. He was kind of sleepy, but he kept his hands on Riley's head and ears and was petting him. I think Riley liked it too!

After they left, we went back to his room to hang until it was time to go. We turned on some cartoons, Spongebob, and got comfy. At some point during the show, Spongebob and Patrick were making faces at each other. I am not totally sure what happened,but Alistair smiled a fairly large grin and actually chuckled/laughed. Music to our ears!!

The ultimate rebellion!

The transport team finally arrived. It took a bit to get everything organized and t's crossed, i's dotted. But then we were off. Alistair told us he was nervous, which is understandable. It took a bit to get him loaded on the plane and then we were off. He was a little worked up and agitated at first. Then we got him repositioned on his left side, which seems to be a favored and comfortable side for him. He watched out the window for a little bit and then fell asleep and slept the remainder of the flight. When we got to Boeing Field, they had red hearts hanging on the fence and a Welcome Home banner and balloons on the door. We had quite the welcoming and it was wonderful! 

When we got to Children's, my parents were waiting for us. It was great to see them and once we got Alistair situated, Seth and I were able to leave for about 45 minutes to go home, shower, grab some other clothes and food and come back. It was nice to be at home, but it was too short!! Thanks to everyone who helped restock our house with food. It was great to have stuff there to eat and not have to eat out!

We both stayed at the hospital last night. They have a couch bed that folds out into a full bed and wasn't too bad. We both slept a little, but certainly not enough! Alistair slept pretty well. We weren't sure if he would after sleeping all day. But I think intake was fairly stressful for him last night, he got pretty worked up at one point and it took some time to calm him down. This morning he is much better, relaxed and asking for drinks. I asked him this morning how he felt and he replied, "like a new man!" 

Today is going to be a pretty busy day with more intake and assessments. He already has a list of tasks for the morning! I know people are anxious to see us and him, and we are anxious to see everyone, but we would like to kind of ease into visitors. Once we get an idea of what is going on, it will be easier to figure out when good visiting times will be. I will for sure keep you posted. 

Once again we are truly humbled and grateful for our village. I was telling the flight nurses about all the love, support and donations and I can't talk about it without tearing up. I don't think we will ever be able to truly thank everyone for everything. Just know we are forever grateful and will be there for you when you need it! 

Mama....I'm Coming Home...

At the 11th hour today we got the news that Children's had an acute care bed for Alistair and would be available to accept us tomorrow! We are coming home! The amount of relief I felt course through my body would have brought me to my knees if I wasn't already sitting down. I want to go home, I don't feel anything anymore, I am tired and just feel like I am moving through life. But most importantly I stress about Alistair getting his rehab needs met. The nurses and therapists are doing their best to work with him and help him here, but there are much easier ways to work with him and help him. He will get assessed by the team there and then will get lined up to be admitted to rehab. 

The road continues to be long and probably hard, but will be made more tolerable by being home and having more support. The last few days have felt like we have been treading water and not moving anywhere. You start to feel numb. Everyone is at the end of their emotional rope, it doesn't take much to bring us to tears. We asked Alistair if he remembered Airlift Northwest and he said yes. Then we said they were sending him a private jet to bring him home. He said, "that is nice of them!" 

Today was a decent day. Alistair slept for a long time this morning. He finally got up and had breakfast, did some PT and then had a shower. He didn't seem to enjoy it at the time, but later said it was relaxing. Once all that activity was over, he took a nap. Gabe, Ranae and Sully came down for one last visit. Alistair had his lunch and then we took Alistair on a field trip out to the courtyard. He slept through most of it, but did some interacting. Once we got him back to his room, Seth and I went out to lunch with the Sandholms and then said goodbye for what we hoped was the last time (and turned out to be!).

When we got back, PT was here and put Alistair on the tilt table to do some standing and weight bearing on his feet. We got him up to about 60 degrees again...which was what he did last time. But the last time was in the ICU, which was a few days ago. Once he was up that high, we all gave him hugs and kisses. It was very cathartic and emotional for all of us, including the nurse and the PT! Lots of misty eyes! :) He slept for a while again after that and then we decided to put him in his wheelchair for dinner and head out to the atrium to eat. He slept for the longest time as he started a new medication today that helps relieve his tremors better. He actually was relaxed, breathing deeply and you could see his eyes darting in REM sleep...so important for brain injury recovery.

We are looking forward to getting home tomorrow and continuing care for our son in a spectacular institution like Seattle Children's. Having spent time there 9 years ago, I know we will be in extremely capable and caring hands. I do want to give huge kudos to the doctors, nurses and other support staff in the care of Alistair and us while being here in Rochester at the Mayo Clinic. Our nurses were especially wonderful and I will miss many of them! 

Washington, HERE WE COME!!! 

Living in Limbo

Last night I stayed with Alistair, so I wasn't able to post an update. This morning will be short as I will write a more thorough one tonight.

Yesterday was a fine day. The hospital is quiet on the weekends, not as much hubbub going on. It's good and bad. Judy went to the grocery store and bought some delicious, FLAVORFUL items for Alistair to eat. His food he gets on his try, for the most part, is not great and not a lot of flavor! I wouldn't want to eat much either! He still has to have thickened liquids, but I think he is almost to the point where he might be able to have regular liquids again. His food needs to be soft, like yogurt, pudding and applesauce. So it is a bit of a challenge to find stuff for him!

Alistair had PT and OT yesterday. The first time was just in his room, the second time we took him outside. We actually got outside twice yesterday. I think that helped with sleeping last night. I think he had a much more restful night and slept more and definitely rested more. I tried to not engage with him and reminded him that it was sleeping time. He was still sleeping this morning when Seth arrived to relieve me to go home and nap and shower.

The big question continues to be when we are leaving. Alistair has pretty much been cleared to leave on this end of things and Children's is ready to accept him...when they have a bed. The house is full apparently. There will be a call made this afternoon and they will have a better idea of bed availability then. Keep everything crossed that this is the case. Alistair desperately needs to get home, assessed and admitted into in patient rehab. I don't want to waste precious recovery time waiting. The therapists here are being great and getting him moving and working with him. And they will continue to do so until he goes.

More tonight.  

I would like everybody out of my room

This was the sentiment relayed to us when Seth, Dad and I arrived to Alistair's room this morning. Grandma stayed with Alistair last night. They had quite an active night and he was very chatty and not wanting to sleep. So she left this morning to go home and recover a bit. I was talking to Alistair, who seemed anxious or something was wrong and he said something about wanting to leave. I told him that we all wanted to leave and that we were working on it. Then he said, "No you!" I said, "Oh, you want me to leave? Ok, I will do that. Do you want Daddy or Papa to stay with you?" He said, "I would like everybody out of my room." We were inclined to comply since the nurse was in his room and would be for a bit. He asked for it, who were we to say no!? Soon after his Occupational and Physical Therapists showed up and worked with him. Then Papa spent most of the morning supervising in his room while other services visited; Occupational, music, massage (which he requested) and another dog visited today. In the early afternoon we headed out to the atrium to eat our lunch. Alistair had used the bathroom and when we was done, they put him in his wheel chair to sit for a bit. I asked him if he wanted to come join us while we ate our lunch since he already had his. He told me, "that would be lovely." Then he had some ice cream while we ate.

We have made some major headway on getting out of here. We are hoping Sunday. Tomorrow morning Dr. Dearani will be checking Alistair's sternum incision. If all goes well, he will hopefully give the green light for us to leave. We are really anxious to get Alistair into an in-patient rehab program as he is already starting to make big improvements and with more help would multiply those improvements. The Neurologist who has been following Alistair this week actually told us she has high hopes for Alistair to recover, which is a huge thing for her to say. Dr. Dearani also concurs with her. We have high hopes too, but the road will be hard and will require lots of help and intense work. 

Today we made the decision to begin the process of getting home outside of the hospital. Tomorrow, my Dad will be traveling home with Gillian. My Dad had a very hard time separating from our hospital tribe. I think he didn't want to leave us and the support he has been providing, but more over I think he didn't want to leave his grandson. My Dad has been very hands-on with Alistair and hasn't been afraid to dive in and help with stuff like toileting, transferring and eating. He has been an integral part of our support system and was a welcome respite for the rest of us. In my opinion we tasked him with a very important job and getting Gillian home safely where she can begin to get back to a normal routine was very important to us. She will be staying with Uncle Ethan and Aunt Jen next week to go to day camp with her cousins. She is pretty excited! At some point she is going to have to come home and face our life. Our normal is not anymore and our new normal, at least for a while, will certainly impact her and we need to figure out how to make it work with her in it!

Another day for the fundraiser and people's generosity have blown us away. I don't even know how we will ever thank everyone appropriately. The money raised will not only go toward getting us home where Alistair can start to recuperate, but will also go toward making temporary adaptive modifications to our home for Alistair to be able to get around as well as outpatient therapy beyond what insurance will cover. Here is the fundraising link to review and/or share: Bring the Hennessey's Home

Tonight the Sandholm's came to visit. Sully had his Ipad with him and sat with Alistair in his bed and helped him play games. It was awesome and Alistair seemed to be enjoying spending time with his friend. We thanked Sully later for spending time with Alistair and not treating him any different than he normally would aside from giving him some help with the Ipad. We came back to the house with them and had dinner and it was nice, once again, to have a mental break and spend time with some friends. This whole experience has been so much "easier" with having friends and family nearby to provide support and help. 

Change is Hard

Yesterday in our Care Conference, we had mentioned the possibility of getting Alistair stepped down to a different room for a change of scenery. This morning we got the green light to get him moved to a different room across the hall, not in ICU. We had our usual morning of the cast of characters parading through our room. Alistair was wide awake, alert and talking to us this morning. Cardiology came in and checked him out and listened to his heart. I asked Alistair if HE wanted to listen as Dr. Lewin has let him do this in the past. He said, "yes, please." So he did, and then I did. His heart sounds so different to me than before! All the docs came by and checked him out and then Judy and his nurse got his room packed up and heading down the hall.

While they were doing that, Seth and I were speaking with Neurology about the MRI results. The results didn't show anything that we didn't already know. He has a brain injury caused by his cardiac arrest that has affected his motor functions and speech, causes him tremors that will subside over time and though his cognitive function might be a bit slow right now, it is virtually unaffected. He will require intense inpatient rehab that will help him get back to pre-op Alistair. 

Alistair's new room is quieter, except for the alarms that they can manage to cull in ICU, but won't in his room. He is an Ebstein's patient with a Glenn repair who now has an occasional irregular heart rhythm and his alarm goes off everyone couple of minutes...and they don't do anything about the alarm except note it, maybe. Between that and his infusion pumps, it isn't much quieter. The other thing nobody seemed to point out to us while we were pushing for Alistair to move was that he would be 2 to 1 nursing but that he can't push nurse buttons by himself if he needed help, so one of us basically needs to be with him all the time. Grandma is staying with him tonight, he cannot be alone at night. Except for those 2 nights last weekend, we have not been staying with him as he has been sleeping well at night and we didn't want to be disruptive. Plus we need to sleep too! Not that we mind being with him, but this is a HUGE thing someone should have pointed out. We have very good channels of communication and have let it be known that we would like someone to let us know if things are a bad idea. The hand off was clunky and everyone admitted it didn't go well. Change is hard and we have been used to the same thing for 13 days, but we went to somewhere where we suddenly felt like we needed to protect him and not just be with him. Alistair is not in danger, but the communication and effort to read charts with the new staff is lacking and therefore we have to educate them on what has transpired for him thus far and make sure everyone is on the same page. It has been a mentally tiring day.

All this aside, Alistair had another day of more and better communication. He has really begun to express himself and ask for things, and "please" has made it's way into his requests. It is so cute when he says please too because you can tell he doesn't want to say it, but knows he should! His speech is still very quiet and his words are short and to the point. Eloquence is still escaping him, but he is getting his point across. He just needs more restful sleep and things will continue to progress. 

We are working on getting out of here Saturday, we hope. This hinges on a number of things that will be discussed in the morning, but we are passionate about getting Alistair to Children's so he can get going on rehab. Time is of the essence and we don't want to waste it. The OT/PT people here are wonderful and we wish we could take them with us, we don't want to stay here. I am willing to bet there are equally great people at Children's. Alistair just needs to be home and we need to get him there. We are in for lots additional time in the hospital at home, but at least being at home and having some reinforcements will allow us to get some much needed breaks to get refreshed and reinvigorated.      

Thank you to everyone who has donated to our page to help get us home! We are truly humbled by the outpouring of support from so many people near and far. We are blessed.

Take a Breath and HOLD IT!

A little humor for today. Seth got to listen to a woman with an extremely THICK Midwestern accent yell this to another MRI patient while he sat with Alistair today. When you read the title, think nasally and VERY Midwestern...almost North Dakota (Fargo!). We were all giggling while he was doing his impersonation today...much needed laugh!

Today we got in around 8am. Alistair was beginning his day and we had fresh laundry for him, so we were able to offer him choices. First were his shorts, where he chose "the ones Grandma washed." Then on his shirts, he chose "Ninjago," without us providing that term first! We got him dressed and were getting ready to do teeth when it seemed that an entourage of doctors were going to come in. So we paused for a moment. While we sat there, Alistair was looking around and looking at his airplane photos and started trying to talk to us. Eventually the following exchange took place...keeping in mind his speech is quiet and very interrupted and/or merely mouthed and I played stupid to get him talking:

A: "I wish I had a P-51 Mustang, it is my favorite airplane"

K: "Oh yeah, that would be cool! Who is your favorite pilot?"

A: "Chuck Yeager"

K: "Oh right, what plane did he fly?"

A: "X-1"

K: "Who flew the Kitty Hawk? Some brothers?"

A: "Wright Brothers"

K: "We saw that on vacation in Washington DC, right?"

A: "Yes"

K: "Amelia Earhart had a plane too, right? The Lockheed...?"

A: "Vega"

None of this information was fed to him and it wasn't hanging on the wall anywhere. It was so great to "hear" him talk about one of his favorite subjects. Grandma helped him brush his teeth, clean up his mouth and put on some lip balm. Then she told him he was so nice and clean and kissable. He puckered up his lips and waited for a kiss! Of course Grandma obliged! 

After that the morning got super busy with doctors and trying to figure out MRI details and when his OR visit would be to check out his incision and coordinating the two. In the meantime, Seth and I had a Care Conference with his team of docs to discuss what is going on and what the plan is for Alistair until we head back to Seattle. It was very productive and we left with a few goals in mind that everyone felt would be attainable in the next day or so...including getting him OUT of the ICU and into a patient room. A change of scenery would be a welcome change!

Alistair finally was called for his MRI. We successfully argued against him having to be sedated by guaranteeing that he could lay still if Seth could sit with him. We asked for ear plugs for him to dampen the loud noises of the MRI machine. They were still a little nervous and I asked if he could have Benedryl or something that would make him drowsy. They thought that was a great idea (and hadn't thought that!) and asked the MRI techs. They were cool with it and decided to give him Versed; the same stuff he had pre-op that made him loopy. Seth said he sailed through the MRI, no problem. After the MRI, they were able to whisk him right into the OR for his incision exam.

After about 90 minutes, they called us down where Dr. Dearani told us he was able to open up Alistair's incision and get a good look at his sternum. It looked great, nice and hard and the titanium ties looked great too. Phew, no bone infection! They debrided the wound, closed up the closest layer to the sternum and have resealed it with a sterile dressing and placed a wound vac (a negative pressure dressing). He does have a bit of a fever and they have collected cultures on his blood and lung secretions, just to be on the safe side. He has been on prophylactic antibiotics and they have prescribed others as things have popped up until they are given a reason to discontinue use. So any infection that is trying to crop up should quickly be eradicated. He was re-intubated for the procedure, which is a bummer. What Dr. Dearani had to do would have been uncomfortable for him under light anesthesia. But they were able to keep the meds light and not knock him out for days like his initial procedure. Even when we left, he was starting to stir. We are really hoping he will be able eat breakfast in the morning and get back to establishing a routine.

As he got back to his room and was getting settled in, we sat and waited to hear from Neurology about his MRI results. We finally got called back to his room. He was still intubated as they were waiting for him to wake-up more and over-breathe the vent. We asked about the MRI results and our nurse told us that Neurology was gone for the night and they would touch base with us tomorrow regarding the results. We read this to mean that although there might be something found, it wasn't important enough to rush back in to have someone talk to us tonight. That's a good thing!

We are still working on options to get Alistair home. At this point we are probably looking at not leaving until Sunday or Monday as Dr. Dearani wants to see him improve with his fever and see his incision heal some. We also feel that a few more days of intensive OT/PT would be very beneficial to him tolerating travel home. Some wonderful people that Seth and I have had the great fortune to meet through his jobs have set-up a fundraising site to help us defray the costs of getting Alistair home. Our insurance won't cover travel expenses due to the services Alistair needs being offered where we are now. They don't mind us moving to another facility, but we have to provide the way. We also know that there is going to be some additional costs in rehabing Alistair back to himself...both inpatient and outpatient. If you would like to help or share the site, here is the link: http://www.youcaring.com/alistair-hennessey-and-family-397375

Some things finally went Alistair's way today, which was much needed. We are feeling pretty good tonight. I actually finished my dinner...lately it has been a struggle to eat much in the evening as I have been drained and emotional. Here's to the next few days being unremarkable from a medical standpoint and exciting from a rehab standpoint!  

Working for a living

Alistair had another busy day. He had so many people in his room off and on all day long. When a doctor rounds on him from a different department, they bring with them residents, fellows, medical students, etc. So it is always an entourage, hardly a single person. Alistair has really begun to take notice of the groups and takes it all in. If the conversation can't or shouldn't include Alistair, we have asked people to take it outside his room as he is clearly listening! If it can include him, we ask people to speak TO Alistair and not talk about him in front of him. He may not be able to participate in the conversation, but he sure can be treated like he can!

He had a great sleeping night again last night. He just needs to sleep and sleep and sleep. The more quality REM sleep he can get, the better. We took our time to get in this morning as we wanted to make sure he got to sleep in. When we arrived, he was getting his daily morning routine going. He was about to brush his teeth, so I jumped in to help. He began by himself and then I helped him to finish. Then we got him back into bed and I helped him get dressed for the day. He asked me to watch television and I asked him if he wanted a show or a movie. He told me show. I am sure he was trying to tell me which show, but I have yet to master lip reading (none of us have) and it makes it very frustrating - mostly for Alistair. Once he got settled into his show, then we had the revolving door of specialists and having to turn off the TV to get his undivided attention. Some examined him, others worked with him.

Alistair had a visit from Baxter, the pet therapist, this evening. Though he wouldn't completely open his eyes and wake-up, Alistair seems to enjoy having the canine company and reached out to hold on to Baxter's paw. 

At the same time this was all happening, my amazing husband was attempting to move heaven and earth, along with his awesome friends and co-workers to try to get Alistair transferred to Seattle Children's. Thanks to Chris Martin and Brenda Nelson at Airlift Northwest, we were going to have a fight home tomorrow. That is not going to workout due to some minor complications. But there is another option to hop on an airplane returning from New York, called a dead leg as there is no planned patient. This is all dependent on timing on all ends. Not only were Airlift Northwest, UMP/Regence Blue Shield and our friends in high places helpful and willing to move quickly, but the teams we have been dealing with at Mayo were SO helpful in getting things rolling in a quick manner. They truly care about Alistair and have his best interest at heart. Everyone is on the same page that Alistair would have the most successful rehab experience at Seattle Children's where he is near his home and where his friends and family can come visit him and motivate him to get better.

This all was postponed this evening when we saw Dr. Dearani. Alistair's incision has a small, 1/4" spot where it isn't healing and is weeping. It could be nothing, but he doesn't feel comfortable discharging Alistair to Seattle without making sure it is indeed nothing. If it is something, he wants to take care of it and get it heading in the right direction before he is transferred. So tomorrow he will be re-intubated and slightly medicated to go to the OR so Dr. Dearani can get a good look at his incision. He thinks it needs to be cleaned out, reclosed and have another woundvac placed. Since Alistair is going to be sedated and intubated, they made the decision to go ahead with the MRI and collect all the pieces to the puzzle so we have a clear picture of what is going on.

At this point, it is just par for the course. Nothing can be easy. I don't mean that in a "whoa is me" kind of way, but more of a general fact. We just can't seem to have anything be face value, straight forward or routine. At this point I feel like a skeptic, waiting for the other shoe to drop. I am not losing my optimistic outlook, but it so tiring to constantly readjust my expectations and to find the silver lining. But I am still finding the silver lining...and that is a good thing.

Revolving Doors

Alistair's nurse, who was new to us, remarked at one point today how busy he is. There was always someone in his room working with him. We have Occupation Therapists, Physical Therapists, Respiratory Therapists, a Massage Therapist, Neurology, Cardiology, and Childlife Specialists...not to mention the 5 of us, Gillian and today Gillian's cousin Alexis and her Dad, Pat, came to visit today. No wonder the kid passed out around 7 and didn't really seem to care we left for dinner!

Alistair slept so well last night. Seth stayed with him and was surprised at how much sleep he was able to get. They started Gabapentin last night that was meant to calm his tremors to be able relax and sleep soundly. It worked like a charm. He didn't get up until almost 9am this morning. He has a long road to go to catch up on his sleep, but it was so nice for him to get some sleep. Once he was up and at em, therapy became the theme of the day. Along the way he had a peripheral IV put in so he could get rid of his central line. He had his last chest tube pulled this morning and then eventually his central line was pulled. So now the only thing he has attached to him is his NG tube and his nasal cannula. But both of those items can be taken off as needed to allow him to get out of bed and do other things.

Alistair did more work on the tilt board today, which gets him to a standing position. He didn't get all the way to up and down standing, but fairly close. Tomorrow OT is going to do a swallow test to see how he does eating. They are concerned with him aspirating, which is a valid concern! The only time he has coughed after intake is with a straw. But they decided to play it safe until he was less sleepy and more alert. Popsicles are okay as it is such a slow method, but hopefully tomorrow will allow him to have pudding, ice cream, etc. Once he gets the okay to eat things as tolerated, sky's the limit. We just need to get him calories and fill him up. Between getting him more sleep and getting him more calories, we should really start to see some improvements! 

We went outside again today. We ventured to the Peace Garden as we could see the helicopters come and go from the hospital roof. Alistair really seemed to light up seeing them fly over. Pat and Alexis joined us and Alistair watched Alexis and Gillian run around together.

We decided to go back to the house tonight instead of one of us staying. Initially it was so we could eat together. But then we decided it would be beneficial to Alistair to be able to have a quiet night to sleep without a lot of distraction. I do feel a little bad that one of us is not there, but we need to have a mental break too. I mentioned to some friends tonight that I really enjoyed being inlcuded on a message strain about neighborhood chatter about a house going up for rent. It was nice to talk about and think about something ELSE. Days and dates don't matter, they all go together and tomorrow is a day and nothing more than that. All our discussions revolve around medical discussions and things pertaining to Mayo, Alistair and being HERE. 

Tomorrow we were supposed to fly home. I wish we were. It is hard to be away from home for so long, especially when you aren't having any fun. I was telling Gillian this morning that it was hot at home and our house was probably hot and stuffy and I really wished we were home to complain about how hot our house was! I she thinks I am a little off my rocker!

Busy Day!

After not getting much sleep, I figured not a lot would be accomplished, by Alistair or me today! Seth, my Dad and Gillian came to relieve me this morning. I came home, wrote the blog post, called Alaska Airlines to cancel our flights on Tuesday and then took a shower. Seth had strongly encouraged me to take an hour or so nap and I fully intended to do that, but then OT/PT were coming, Neurology was coming for an exam, Seth and I were taking Gillian out for lunch and ice cream. So a nap escaped me, but I did pretty well running on fumes!

                               

Alistair also had a pretty great day despite his restless night. He had a couple of dangles off the side of his bed with minimal support. Troy and Seth picked him up and set him on a portable commode to try to use the toilet. He didn't go, but sat up quite well on his own. He had a great workout with OT this morning working on looking at magazines, turning pages, stretching, etc. Afterward Papa helped him with a Popsicle. When we got back from lunch, PT came and put him in a standing device. We didn't get all the way to standing straight up and down as they want him to have more supportive shoes...I only brought easy shoes to put on as I figured he wouldn't want to bend over and tie then after his surgery. So tomorrow morning I will buy him some tennis shoes and hopefully they can get him to fully standing with support. While he was in his slight standing position, he worked with some balls and tried throwing them to me or Gillian. He took a little rest after his session with them and then we got him ready for going outside.

                                       

Ranae, Gabe and Sully came to visit and met us in the courtyard by the fountain that Alistair was adamant about visiting after he had his surgery. So after 40 minutes of getting him transferred into a chair and moving all his stuff over, we headed out to greet the Sandholms. They brought him some books to read as well as a box of Megablocks (Duplo Blocks). Ranae thought he would like to build, but legos would be too small right now. Brilliant idea! We opened them and he, with assistance, put about 5-6 8-dot bricks on a platform. Then was done and one by one took the bricks off and handed them to me. Then Sully held up the box and Alistair picked up each block and put them away in the box. The whole time he was experiencing tremors, but he was determined!

Getting him outside was great for him. We spent almost 2 hours in the courtyard and I think he really enjoyed the fresh air, the sounds, the breeze and watching other people. It was hard for some of us to see Alistair next to Sully, comparing him to how he should be. I also was bothered by the way people looked at Alistair as we rolled by. But overall, the experience was positive and hopefully will be and added bonus to give him a good night's sleep tonight.

When we got back to the to the room, I asked him if he wanted a Popsicle. He told me he would like a Popsicle (mouthing the 3 syllable word) and then I asked him if Gillian could have one too and he said yes. So they had Popsicles together. When he was done, he had a breathing treatment that helps loosen up the junk in his lungs. Seth asked him if he would like him to stay with him tonight and he said yes. Neurology has ordered drug for Alistair to start taking tonight that will hopefully calm his tremors to allow him to be able to sleep better. It is not a sedative or muscle relaxer, it just calms him body. They also prescribed Melatonin per the RN's discretion. Hopefully those coupled with the busy day, lack of sleep last night and the fresh air will provide Alistair with some restorative sleep tonight. So Gillian, Dad and I headed back to the house and had dinner.

I am becoming more confident that Alistair will overcome this. I see him in there and he is working so hard to get out. I still have those other feelings that keep trying to take over. I allow myself a little bit of feeling these feelings, but then I take them over with positive thinking and outlook. I believe in Alistair and I know if nothing else that we have taught him how to get back up after being knocked down and quitting isn't an option. That being said, all of this really, really sucks and honestly, it's not fair! I wouldn't wish this on anyone and I feel like we have already been handed so much diversity with Alistair in his lifetime. I do believe you are never given more than you can handle and I suppose we were chosen to have Alistair because we can handle this. But I think after all this is said and done, we are good on handling stuff and the rest of his life should be a cake walk. 

I want to go with you home...

Last night Alistair spoke this phrase to me. It broke my heart because I know he is in there and is struggling with everything going on. I told him we couldn't go home yet, but if he wanted me to stay with him I would. He said yes, so I did. Thus why there was no blog post last night!

Alistair had a pretty great day. When he woke up after sleeping for about 5 hours and was up for the day, he told his nurse he wanted to watch TV. When we got in he was alert and interactive. He told me he needed to go to the bathroom. So his nurse, who is a guy, and Seth assisted him with the bed urinal and he went. He did this again later in the day. His night nurse, who is a woman, and I had less luck with him using it. I think part of it is he is tired and possibly part of it was we aren't dudes! They pulled his foley catheter a few days ago because they didn't want to cause an infection, but he isn't always able to say when he needs to go, so they have him in some briefs just to be safe.

Alistair had a couple of popscicles yesterday. This was initiated because Troy, our nurse, gave one to Gillian. We decided to let Alistair try one. Seth helped him hold it and he seemed to enjoy it. I think something with flavor was good and probably something cold was also good. He had some more Vitamin Water too. We will bring in more today as he has run out. Anything that tastes good to him!

As I mentioned, Gillian came down to spend the night with us. Grandpa and Grandma went and got her for us. It was so good to see her, but yet sad for me for a couple of reasons. I didn't realize how much I missed her (which the decision to stay with Alistair last night made me feel guilty that I wasn't spending time with her). I also had kind of forgotten our family dynamic and walking with her to the hospital reminded me of it and made me sad that it will be different for a while. We did a lot to prepare her to see Alistair. We explained that he sleeps a lot, he doesn't move too much yet and he doesn't speak a lot. We also told her he had some tubes attached to him. She didn't seem to be too shocked by him, but kept asking Seth why he couldn't talk or get out of bed. When we were walking to the car afterward, she told me, "I feel really bad for Alistair!" I don't think she completely understands all that is going on, but we chatted this morning and she seems to understand he needs help and it is going to take a while.

Last night before bed he had another chance to sit on the side of the bed and dangle. He sat there for about 15-20 minutes minorly assisted and held his head up by himself almost the entire time. His strength is beginning to come back slowly. He has started to tremor, mostly at night, through his arms. Occasionally it turns into a full body shake and he looks at me and is obviously concerned. Neuro, through the continuous EEG, saw these the previous night and said there is no sign of seizure activity and this is all muscle related. They are still wanting to do an MRI tomorrow and we are for it if we can do it without sedation as we feel this would be a big set back for him.

I am really happy about all this progress and am getting on board with the he just needs time and it will all come back. But I am really angry that we have to celebrate that the can hold his head up and ask to pee in a plastic container in bed. We should have been out of he hospital by now and heading home in 2 days. I know there could have been set backs and things don't always go according to plans, but I never would have thought we would be dealing with these set backs. I am really trying not to think about our family with these new dynamics and thinking of it as temporary situation. I can't help but look at all our photos of Alistair and his brights eyes and personality and wonder if we will see it again. I am putting in all my chips with anyone listening that we can have our son, brother, grandson, nephew and friend back to himself with time.    

My Glass was slightly Refilled Today

Alistair and his nurse, Jessica, who is the flight nurse. She was back on stand-by today and in her flight suit! This was our last day with her and we are supered bummed, including her!

We called in this morning and Alistair didn't sleep much last night. He got about 2 hours of solid sleep. So we had another early morning to head in and get working with him. It was very perplexing that he didn't sleep since he had such an active day yesterday. He was awake most of the day yesterday and worked quite a lot, so we thought for sure he would sleep. We got in and he was awake, of course. But he also seemed to have a fixed gaze to the right; in that his eyes were looking severely to the right and didn't seem to be able to look elsewhere. We were trying to get him to track, but it was challenging. However, when rounds started and they were standing outside his room, he looked that way. He also watched people go in and out of his room. So we started to feel better. But they decided to have neurology come in anyway to assess him. They tested a few things, asked him to do a couple of things and then decided the best thing to do was to set him up with a 24-hour continuous EEG. They really want him to have a an MRI, but the rest of his care team still doesn't want him to have it. They have compromised on having him have it on the 20th if there aren't significant changes. But the EEG, as cumbersome it is and limiting in activity it is, will show what we all know, nothing is wrong. He just needs time. We are pissed that they decided to do it just because we had talked about taking him outside today and getting him in a chair and being a bit more active. But part of the 24 hour continuous EEG means he has to be monitored by CCTV A/V, so he has to stay put. But it will rule out stuff and we won't have to guess.

This morning was hard. The eye thing was concerning, but once we saw him move them to look at other stuff, we felt a bit better. Right after lunch his nurse decided to have Alistair sit up and dangle his legs again...which takes about 3 people (2 nurses and 1 of us) as he has just about no strength to do it himself. Right before he was sat up, he had a drink of Vitamin Water that we had via a sponge on a straw (he is too sleepy to drink by syringe or straw). While he was sitting up, he started breathing deeper and sighing with a bit of vocalization. I then realized he was trying to talk and watched his lips move. He told me through his very sighed and quiet tone that he wanted more water. When I repeated it to confirm, he said yes in a heavy sigh. My heart SANG! The PT who was working with him was hesitant because of the position of his head and neck and I told her he asked for it so he should get it. So we repositioned his head and gave him what he ASKED for. Then they got him back into bed and we gave him a bit more. After that I had to leave to go to the airport and told him goodbye. I waved to him and asked if he could wave back at me and HE DID. My heart sang even louder. I spent the morning crying and now I was riding high. 

I drove to the airport as reinforcements arrived in the form of my Dad. He needed to be here, and honestly it is nice to have some fresh blood to sit with Alistair and encourage him out. And don't tell my Dad, but it is nice to have him here for someone to be supportive and an additional shoulder to cry on. I also think it is good for Papa to be with his Grandson. 

Seth was talking to the PT after she was done with Alistair and asking about long term PT. She said he would most definitely be a candidate for in-patient rehab. Seth asked about her doing it here or if he could go home to Seattle Children's. She said she would see no reason why he couldn't come home to do in-patient rehab there and that it would be a better situation as it would be closer to home and his friends and family could be around to help and encourage him. That is good news...as much as I like Minnesota, I would like to leave it and go home!

I hope that this gets better soon. I want to get definitive information that nothing is wrong and he just needs time (as so many have said). I hate having these negative thoughts and thinking about dark things. I am trying to focus on the small steps he is making as well as all the things everyone is saying about how they have seen this before, in much worse situations, and the kiddos have recovered just fine. Many of the care providers are optimistic about a full recovery and I hope they are right.

Rose Colored Glasses Missing

Disclaimer for the following post: I am usually a glass half full, silver lining type of person. Today was my day to be the opposite of that. 

We called in this morning when we got up. His nurse said he had a good night, they pulled out his arterial line in his neck and one in his leg so that he could be more mobile today. The goal was to stimulate him more and get him moving. Seth and I walked in as we just wanted to get in ASAP and get things going. We watched movies and cartoons, showed him videos of him flying his airplane, the Blue Angels and the helicopter landing on the roof of the hospital. We showed him photos of people and places, read him books and played music for him. Seth, Judy and I took turns feeding him parts of his meal. David spent some time talking to him. I will say his face looked more toned today and not so relaxed and drugged out. His eyes were also a bit more opened and not quite so droopy. He pretty much stayed awake all day. He took a couple of cat naps, but nothing overally prolonged. 

Our attending from the weekend came in today and it was so nice to see him. He said based on the CT scan from yesterday that he thought Alistair just needs more time. But they decided to have a Pediatric Neurologist come evaluate him. He came in, asked us a bunch of questions, asked a bunch of things of Alistair and then left. He had mentioned the possibility of doing an MRI. But the rest of the ICU team was very anti-MRI as it means he needs to have sedative and we don't want to take THAT step backwards. There is an MRI scheduled for Monday, should he still be in this state. He did have an EEG this afternoon (EKG for brains) and it showed nothing, which is good. They decided to order OT/PT and had a rehab nurse come up to work with him. She told him she was there to work with him and help him get moving agian so he can be nice and strong for lacrosse. He seemed to respond to that and was cooperative.

Dr. Dearani came in to check on him this afternoon. After trying to talk to Alistair and get a reaction, he told us based on his neurology testing, his cardiac function, he thinks he just needs more time and that he will get there. Dr. Dearani seems to be a man who doesn't extend himself, he won't say anything he will have to retract. He also seems to have developed a soft spot for Alistair...he is a jazz fan after all!

Today was hard for me. I feel discouraged, disheartened and frustrated. I just want to HEAR him speak and interact with us. He moves and sighs in such a slow manner and his reponses, few as they are, are delayed. I don't even care about the physical part right now as I know that will recover. I just want my son who is chatty and will bore you to death with facts about airplanes at the the same time he is finding every angle to find a way to get a fish tank in his room. I want to hear about how excited he is to go to the beach and talk about minecraft and what he is going to design next. I will feel 120% better when he is talking to us again. I just need to know he is okay mentally. The rest is secondary. My mind knows this will all come together and that the medical professionals are telling me it will be fine and he just needs time. But my heart is heavy and sad and missing Alistair. 

Mostly good day with a few hours of HELL!!

Today ended up being a good day. We came in this morning and Alistair was "watching" Teen Titans Go! His nurse, who was wearing a flight suit because she was on stand by for medic flights, saw on his board what he liked and put it on for him. It's too bad he wasn't more with it because he would have loved seeing her! He opened his eyes a little for us and seemed excited to see us. I helped him eat his jello, he had a little bit of juice and went back to sleep. He would focus on TV a little. We read him books and he would look at the book and kind of focus on the pictures. But, at the very least, I think he was listening.

He is having a heck of a time getting his sedation and pain meds out of his system. At this point the only thing he has going is Tylenol for pain. He looks stoned, he acts really drunk - like on the verge of passing out - and you just feel so bad for the poor kid because I am sure somewhere in there he is trying to communicate with us! It's very frustrating, for everyone!

After his lunch, his nurse tried to order a swallow study for him. He coughed a lot while drinking his broth. But we hypothesized that it was due to getting so much liquid at a faster rate than getting it through a syringe or by spoon. The attending decided that before we did that, we should rule out any neurological issues related to his cardiac arrest on Friday causing his inability to shake off the sedation. She came in and told us they were ordering a CT scan on his head and we should know something soon. We had just come back from lunch (what is it about lunch and bad news!!??!!). When we got that news, my lunch did a backflip in my stomach. It took forever for them to call for his nurse to bring him down, the scan was quick and then it was another 90 minutes to 2 hours before we got results. It was awful waiting. We both sat there imagining all kinds of things. Seth summed it up when he said, "we brought him to Mayo to get fixed, not to break him!" I was imagining our next 20 years taking care of this kid who had such potential. It was not good. Finally they got the images back and it showed nothing, which was GREAT! I could feel the stress draining off of me as reality sunk back in.

Dr. Dearani stopped by too and he said Alistair just needs time. He said to go ahead and  stimulate him as much as we can during the day with the things he likes and keep him quiet at night to keep his diurnal rhythms going. With all this laying around, he will need a lot of rehab to get him moving again. Time is what he needs, time is what we are going to give him, more time here is what we are in for! 

The room next to Alistair's is a short timer's room. They put people there who only need a day or two to recover. Even though I know this, I find it irritating to see all these people roll in and out in short succession. Like this morning, a little girl who was totally out of it came in. This afternoon she was sitting up in bed eating a Popsicle. I would be lying if I said I didn't hate her just a little bit! I hope soon Alistair will be sitting up in bed eating a Popsicle, or better yet walking around the unit eating a Popsicle and flaunting it!

Gabe and Ranae came down for a visit tonight. It was a much needed scale call and nice to spend some time with them! And it was perfect timing as we got our good news while they were there, so having dinner with them was that much sweeter!

Tomorrow is another day. Slow and steady, one day at a time, onward and upward.