31 March 2012

Day 867 – Grayson’s Journey

Dear family and friends

Today was sleep-in Saturday for Grayson and I. Regina was up with the chickens as usual! We enjoyed our late morning together before I had to head to church to rehearse for the Easter Vigil service next week.

Regina was greeted with a surprise visit from Austin and Xixi this afternoon. We had a delightful dinner together and a wonderful visit. It is always so great to see them. Someday when Lauren gets a little closer to California we may get to see her again too!

Grayson had a very nice and easygoing day today. He was thrilled to see his brother and Xixi and he was alert and active all day.

What a nice end to the first quarter of 2012!

Pax!

Brant

30 March 2012

Day 866 – Grayson’s Journey


Dear family and friends

We arrived home quite late last night after attending a birthday party for Regina's sister Rita. It was all we could do to get Grayson ready for bed then collapse ourselves. I guess we aren't 29 any longer!

Pax!

Brant

29 March 2012

Day 865 – Grayson’s Journey


Dear family and friends

Grayson was as always in good spirits today. He spent some extra time late this afternoon working with Regina on his speech. It is like pulling teeth to get him to use words – he has become so comfortable with using gestures and one word responses to communicate to those that are familiar with him. After an hour of hard work, Grayson was speaking just a little bit more.

Pax!

Brant

28 March 2012

Day 864 – Grayson’s Journey

Dear family and friends

Grayson was tired today. After Anishka left he fell asleep in his chair while reading his magazine. He was just pooped and I'm not sure why. He was low energy this evening while we gathered and took out the trash (Thursday is trash day). He even decided not to watch a TV show and go to bed early.

Perhaps a long night in lala land is just what he needs!

Pax!

Brant

27 March 2012

Day 863 – Grayson’s Journey


Dear family and friends

Grayson had a good day today. He took two walks on this sunny California day, got to attend a portion of a church financial campaign meeting (the high point of his day I'm sure!), attend a Cub Scout meeting, have a great dinner – what more is there?

It's late and I need to get to bed!

Pax!

Brant

26 March 2012

Day 862 – Grayson’s Journey


Dear family and friends

Today was a cloudy but clearing day here in Southern California – tomorrow the sun should be out!

Grayson was alert today and his cold is finally about gone. He had a few walks with Anishka today and he is actually showing a few signs of sunburn on his face! Considering that Grayson is whiter than a sheet of printer paper since his injury, this is good as long as we don't overdo it. Perhaps some sunscreen is in order now that the seasons are changing!

Grayson and I ran to the market tonight to fill out our supplies and get an alternative to the beef stew we've had for the past two nights. As always Grayson was a helper in the market. What impressed me is the speed with which he came up the stairs when we returned home. Normally you practically have to set stakes to see if Grayson has made any forward progress on the stairs. Tonight he was right behind me the entire time – wow! I was shocked when I got to the front door and he was right there.

He is clearly feeling better!

Pax!

Brant

25 March 2012

Day 861 – Grayson’s Journey


Dear family and friends

What a wonderful day in church this morning! The children of the congregation presented the sermon and what a delight it was. What struck me is watching 20 or more kids in the chancel actively sharing in the telling of the Good News. It made me grateful for the dynamic and thriving church we belong to!

Grayson was in good spirits all day, in spite of our rain. I am fond of saying that we get on average of 15 inches of rain per year – unfortunately all of them come in two rainstorms! That is not exactly correct, but it sure seems like it here in the sunny So Cal. When it rains, it doesn't fool around!

We spent the afternoon inside working on home projects. I finished one that has been hanging over my head for a while – the reassembly of my home audio video system. It has had problems for the past few months and I acquired a bunch of parts to fix it. We are now fully back in operation – and Grayson is thrilled!

Pax!

Brant

24 March 2012

Day 860 – Grayson’s Journey


Dear family and friends

Grayson and I got to spend the day together today. Regina had to work so we got into mischief together!

We slept in a bit as we stayed up way too late last night watching a movie. When we did get up we were quite productive doing chores around the house and fixing some things that had been on my list for a while. We left the house to run errands mid-afternoon and returned home around 6:00 to start dinner. We enjoyed another movie tonight, although it was much earlier than last nights!

Grayson was pretty alert today. He continues to be non-verbal but he is always willing to do things. As always he was my cart pusher at the grocery store – a great activity for him. At one point he was coming down the aisle and someone was not paying attention at the end - cross-traffic as it were. Grayson stopped to avoid a collision, then proceeded when safe. His basic skills here are still good!

Pax!

Brant

23 March 2012

Day 859 – Grayson’s Journey


Dear family and friends

Grayson continues to get over his cold – finally! Each of the past several days it has been improving. Regina remarked last night that he seems to be "awakening" a bit – the cold seems to have weighed heavily on his cognitive abilities and now that it is waning so are its cognitive effects.

Grayson had the benefit of some sunshine today and Anishka took advantage of it with a couple of long walks. The clouds are moving in now for a series of rainstorm over the next few days. Glad Grayson got to enjoy the sunshine this week while he could!

Pax!

Brant

22 March 2012

Day 858 – Grayson’s Journey


Dear family and friends

Grayson's cold continues to get better – albeit slowly! His spirits are good and the beautiful weather this week has allowed Anishka to take him on some extended walks in the neighborhood in the fresh air and sunshine.

This evening after Anishka went home, Grayson and I made a quick grocery run then he helped me make dinner. We enjoyed our pork chops while watching Angels and Demons – a most enjoyable evening!

Pax!

Brant

21 March 2012

Day 857 – Grayson’s Journey


Dear family and friends

Grayson's cold is doing a lot better – it is still there but much better! He was much more alert today (not sure whether to attribute that to the cold or the end of a down cycle).

Anishka took him for two long walks on this beautiful sunny day. I even noticed some evidence of sun on his pale skin this evening!

Pax!

Brant

20 March 2012

Day 856 – Grayson’s Journey


Dear family and friends

Grayson for the first time in days appears to be finally beating his cold! This evening Grayson and I ran some errands then made a grocery run for dinner. Grayson's abilities with a shopping cart remind me of his abilities on the ski slope – he may not always know where he is going, but he has a remarkable ability to avoid collision! In the store he chugs along behind me avoiding objects and people along the way. As long as he can see me he is good and will follow. However if I turn a corner and he can no longer see me – he just stops. This is good for Grayson – he is in the community, he is required to do something (push the cart and follow), the task requires constant adjustment for environmental variables (people, objects and other random cart movement) and the rewards at the end are priceless (dinner!)

Pax!

Brant

19 March 2012

Day 855 – Grayson’s Journey


Dear family and friends

Grayson is still fighting his cold. I'm starting to wonder if he will ever get over this! He manages to keep his sunny disposition through it all. However his normally limited focus is even more difficult with the distraction of not feeling well. Keeping him seated through dinner was a major feat.

Grayson did go for 2 walks with Anishka today in the beautiful sunshine and cool air. Yes we still have one more day of winter – or we did this morning. The vernal equinox occurred at 10:14 PM Pacific Time this evening – it is now officially spring! Can I bring out my white shoes?

Pax!

Brant

18 March 2012

Day 854 – Grayson’s Journey


Dear family and friends

Today was a beautiful after-the-rain day in Southern California. We were off to church this morning than ran errands this afternoon. We mostly had an easy afternoon relaxing – a nice change from our normally crazy lives!

Grayson was still having difficulty focusing and his cold is still bothering him. Let's hope that we get through this before much longer!

Pax!

Brant

17 March 2012

Day 853 – Grayson’s Journey


Dear family and friends

It was a rare soggy day here in Southern California. The sogginess will continue for at least one more day then the skies should once again clear and remind us why we live here!

We had a slow Saturday morning then ran some errands in the raindrops this afternoon. It was a great lazy-catch-up-on-rest-and-stuff day!

Grayson was again very distracted and having difficulty focusing. He is still quite bothered by his cold but it appears that it may finally be on the wane – although that may be more hope than fact. Eventually he will get through this!

Pax!

Brant

16 March 2012

Day 852 – Grayson’s Journey


Dear family and friends

Today was a rare gray day in Southern California. The gray will turn to wet the next few days as a major storm is moving South over the area. I am thrilled for the snow falling in the mountains, but sorry that I am not able to play in it!

Today was a busy day for both Regina and I. Anishka was home with Grayson while we worked. Grayson's cold is starting to get better, but it is sure taking its sweet time. Couple the cold with one of his down cycles and he is quite a challenge. He is having difficulty focusing or staying seated during any meal. Last night he had difficulty staying in bed. Fortunately tonight this was not a problem.

Let's hope that he will power through this cycle and the cold and be back on his toes in a jiffy.

Pax!

Brant

15 March 2012

Day 851 – Grayson’s Journey


Dear family and friends

I arrived home tonight after two days in sunny Seattle. I have to say that of all of the times I have traveled up there over the past 8 years, I have never had it snow on me. This trip was a first – snow and rain the entire time I was there. It was good to be back in the sunshine for a few hours today. Rain is forecast here for the next 3 days!

Grayson must have missed me. He kept hugging me all night and wanted to stay close. That certainly made me feel special!

It was a long day today for both Regina and me, and we are back at it tomorrow – but at least we are now in the same state!

Pax!

Brant

14 March 2012

Day 850 – Grayson’s Journey

Dear family and friends,

When Grayson and I are in the car, I find myself doing just what I did when the kids were small. I point things out and ask questions all along our route. Where are we going? What street are we crossing? What city are we in? Who lives there? What kind of car is that? Anything to engage him.

On the way home I told him that Brant was coming home tomorrow and asked what he likes about his dad. His response, "He's funny".

Now that made me smile.

You should be smiling, too, Brant.

Regina

Day 849 – Grayson’s Journey

To our dear family and friends,

Tonight I treated Grayson to something he hasn't had in a very long time – a "Double-Double", root beer, and fries at In-N-Out.

While he was eating, I kept reminding Grayson to hold his burger with two hands. He has a tendency to hold with one hand, everything falls apart and lands in his lap or on the table. I also reminded him to tear the paper down – without the reminders he would ingest a significant amount of not-so-healthful "insoluble fiber". Fries were consumed by the handfuls and I could tell he was enjoying this rare treat.

Since Grayson is still in somewhat of a down cycle, he was very non-verbal, kept turning in his seat and trying to stand up during dinner. Additionally, during this type of phase he holds his hands in a kind of claw-like posture, sits hunched down with his neck bent and scratches his head frequently. (Though, with reminders he will sit up tall, relax his hands and hold his head up for a less than a minute).

As we finished eating a very attentive, sweet young employee (he looked about 19) asked if he could take our trash away. I thanked him and Grayson echoed his thanks. The young man then returned with a paper In-N-Out hat similar to the one he was wearing and asked Grayson if he would like it. Grayson eagerly took the hat and put it on his head.

This short exchange touched me deeply. First, because this sensitive employee recognized that Grayson was challenged and went out of his way to make our visit special.

What I didn't expect was my reaction to this kindness. I am so used to being with Grayson and moving forward and backward with him along his ability spectrum that it becomes second nature. Some days I think a stranger might think there was something off but that he looks healthy and "normal". Other days, when he isn't smiling and stares at people, I wonder if they are intimidated by him. Today, this employee obviously saw a challenged individual with a child-like demeanor and had the courage to reach out and interact.

One of my greatest fears is that after we are no longer able to care for Grayson, that someone will perceive him as a threat rather than the sweet individual he is. He will no longer look like a man/child but a man. Conflict resolution in the public sector isn't always optimal for those who cannot communicate or process traditionally. Without understanding the simple act of bumping someone or putting his head on a stranger's shoulder or taking something off someone's plate in a restaurant could, obviously, escalate to a bad situation.

This is when I must relinquish my fears and trust that there will be other sensitive, loving people along Grayson's path who will reach out and make a connection.

In faith and hope,

Regina

12 March 2012

Day 848 – Grayson’s Journey


Dear family and friends

Grayson's cold was better today – perhaps this is on the wane!

I'm off to Seattle in a few hours. Time to get to bed for an early morning tomorrow – I mean later today!

Pax!

Brant

11 March 2012

Day 847 – Grayson’s Journey

Our dear family and friends,

What a beautiful Sunday! The weather was cool and sunny and we managed to spend the whole day together as a family from beginning to end.

We shared a wonderful worship service with our church family this morning, lunch and grocery shopping this afternoon. Selected spring color to plant in our hanging pots and then shared a delightful dinner and movie evening at home with Austin and Xixi.

Grayson continues to fight his cold and it has slowed him down somewhat. We noticed that his normal shallow breathing is even shallower with congestion. I was quite concerned because he doesn't breathe deeply enough to clear the congestion even with encouragement. My imagination, unfortunately, went straight to the complications of bronchitis and pneumonia. We did, however, discover a very effective trick. We simply have Grayson watch any comedy on TV. He laughs so uncontrollably that he immediately starts coughing and clears his throat.

When there is a challenge, there always seems to be a path. Never give up.

We wish peace and a good night's rest to start your week for each of you.

Regina

10 March 2012

Day 846 – Grayson’s Journey


Dear family and friends

Today was sleep-in Saturday – for me! We got Grayson up at 9:30 as usual because of the short night (daylight savings switch tonight!) We had a casual Saturday morning together over breakfast. This afternoon Grayson and I ran some errands some of which included lunch, groceries and a new pair of shoes for Grayson. As always he was pleasant to be with and interested in his surroundings.

Grayson is still fighting his cold. I hope that he gets over it soon as I know that he is uncomfortable.

I'll be leaving sunny California (I wore shorts today) for soggy Seattle next week. I'm looking forward to a break from this beautiful weather. Yes, I do know why I live here!

Pax!

Brant

09 March 2012

Day 845 – Grayson’s Journey

Dear family and friends

Grayson was in good spirits again today but his cold is running away from his face, or at least his nose. He was so plugged up today that I know he was uncomfortable. Just like the Grayson I saw grow up, he was always stoic about his pain and discomfort.

Rita, Richard, Austin and Xixi joined us for dinner this evening at our favorite Chinese restaurant. It was a slow and fun dinner and Grayson was remarkably calm throughout the whole meal. We got home late, partially due to our leisurely meal and partially due to a large accident that closed the freeway on us. After we arrived home, it was all we could do to drag ourselves to bed – it was a long week and we are all pooped!

Pax!

Brant

08 March 2012

Day 844 – Grayson’s Journey


Dear family and friends

In spite of his cold, Grayson was alert and in great spirits today. When I got home from work we headed off to the grocery to restock. As always, he was my cart pusher. Today he was very focused and moved faster than I remember seeing before.

As Reed Haus victim #2 of the cold season, let's hope he gets over it quickly and does not share it with the rest of the family!

Pax!

Brant

07 March 2012

Day 843 – Grayson’s Journey


Dear family and friends

Grayson woke up bright eyed today. The difference between yesterday and today was phenomenal. When he was having breakfast he was alert and looking at us and around the room. He responded when asked questions, although his responses are not always understandable. He was alert until the time we put him to bed tonight.

Today my cold was remarkably better. Yesterday I was afraid that I may give it to either Regina or Grayson. Today Grayson was not only bright-eyed but runny-nosed. He was really congested by bedtime. Regina had to dig through her notes to determine what she could give him that wouldn't cause a risk with his cardiac condition or medications. We are fortunate that Grayson doesn't get sick very often

The "big outing" for Grayson today was a trip to visit his neurologist at USC for his semi-annual checkup. There is not much to report out of that visit. Regina spoke with the neurologist about the potential use of a drug that might allow Grayson to "focus" more. We will visit that with the rest of the medical team, especially his cardiologist, before we move in that direction.

All in all Grayson was very fun to be around and had a good day, in spite of his cold. He really is a happy child at almost 27.

Pax!

Brant

06 March 2012

Day 842 – Grayson’s Journey


Dear family and friends

Another full day at the Reed Haus! Regina was off to the office early and I worked from home as I am still fighting the bad cold I managed to catch last week. I "think" that I am through the worst, but I also said that yesterday. I'm still praying that I don't manage to give it to either Regina or Grayson.

Grayson was a bit slow today. I wonder what happened overnight – he was alert yesterday and not so today. The roller coaster ride continues but it is not as much a surprise as it used to be.

Pax!

Brant

05 March 2012

Day 841 – Grayson’s Journey

Dear family and friends

Grayson has been particularly alert this evening. We had an easy dinner of pork chops and sweet peas this evening and Grayson as always ate everything on his plate. After dinner he went upstairs to watch some TV. As always when he gets particularly active and alert he had trouble sitting to watch even his most favorite show – AFV. Later when he went to bed he just couldn't stay down.

We are obviously in one of his alert cycles!

Pax!

Brant

04 March 2012

Day 840 – Grayson’s Journey

Dear family and friends,

This Sunday morning, I was up and out early to serve at both of our worship services. This allowed Brant to get Grayson up and ready for the day. When he went into Grayson's room to wake him, Grayson was giggling and laughing – in his sleep.

What a great way to start the day – for both of them.

This evening we sat after dinner, talking with Austin and Xixi when Grayson stood up from the table. I asked where he was going and he pointed up and answered "to bed".

I'd say it was a pretty good day, from beginning to end.

God's peace be upon each of you.

Regina

03 March 2012

Day 839 – Grayson’s Journey


Dear family and friends

Today was a relaxed day at the Reed Haus! Sleep in Saturday followed by an easy start on the day. Some errands were accomplished and I spent several hours working a vexing problem with a pile of home electronics trying to get everything to play together nicely. One more replacement part may just get me there!

Grayson joined me on my errands today and he was quite alert and pleasant as always. I got enough pieces cobbled together to get our entertainment system partially working so we had the opportunity to watch a movie tonight before heading off to bed!

Pax!

Brant

02 March 2012

Day 838 – Grayson’s Journey

Dear family and friends

Grayson was charming this evening. After I relieved Anishka from watching Grayson, we drove over to pick up Regina from work. We enjoyed a pleasant meal together before heading home to start to rest up from the week. Have a great weekend!

Pax!

B rant

01 March 2012

Day 837 – Grayson’s Journey

Dear family and friends

You know that it has been a long week when both Regina and I had to wake up to put Grayson to bed! He is sound asleep now and so are we – almost. Good night all!

Pax!

Brant