June 17, 2000

Dear Family,

Skylar is at home in Atascadero! We brought him home
on Monday evening.

"When the LORD brought back the captive ones of Zion,
We were like those who dream. Then our mouth was filled
with laughter, And our tongue with joyful shouting;
Then they said among the nations, 'The LORD has done
great things for them.' The LORD has done great things
for us; We are glad." - Psalm 126:1-3

We had left here on Sunday evening and drove as far as Atascadero
that night. Pam did some dusting and straightening of the kid's
apartment, and then we went to bed. A short night later, we
got up at 4:30 AM, showered, and headed for San Jose.

The traffic was mostly good, and we arrived at Skylar's rehab
hospital with time to spare. Skylar's face lit up when he saw
me. "Papa!" he said.

I wheeled several wagon loads of stuffed animals and other
things down to the car. Meanwhile, nurses and therapists and
doctors were coming by to say "goodbye" to Skylar. They have
been calling him their "miracle boy".

Skylar was anxious to leave, and so he sat in a small wheelchair
outside the door of his room for some time while everything was being
prepared for departure. Finally when everything was packed up and
all the paperwork done, I wheeled Skylar down to the elevator and
then to the lobby in his wheelchair. Pam had gone down ahead to
get the van.

When Nana pulled up in the van, Skylar climbed into the back and
up into his car seat. This was a bit of a production as I had to
make sure his oxygen hose and tank followed closely enough without
tangling. Finally everything was stowed and we headed for the
Children's Hospital at Stanford.

We got there in good time, but then it was the typical "hurry up
and wait" situation. Skylar was frustrated with all the waiting, and played
games with the lights, kept asking when we could go, and etc.

Finally a nurse arrived, and she drew some blood for testing. Then
we waited for a long time to see Skylar's BMT doctor. He was pleased
with Skylar's progress and told us that Skye would not have to come
back to Stanford for about three weeks. When the checkup was finally
over, there was still another delay waiting for the pharmacy to fill
a shopping bag with assorted medications.

At last we were able to leave, so we headed for the freeway and
back to the parking garage at the rehab hospital to pick up Suzanne's
car. Skylar was getting hungry and we stopped at Burger King
for a Kid's meal and some burgers for us. By the time we finally
got on the road, we ran into a commuter traffic bottleneck as we
headed south out of San Jose onto route 101.

Pam drove us back to Atascadero while I sat in the back seat with
Skylar. He was looking around and commenting on many things that
he saw outside -- this was his first trip in the car in four months
and I'm sure he was enjoying the sights. "Look at the ocean,
Papa" he said. When I looked where he indicated, I saw a
rather small lake. "That's not the ocean; it's a lake!" I said.

Skylar asked to play "I'm thinking of something that God made",
a game we often play while driving in the car. A while later, he fell
asleep and slept for about an hour. When he awoke, we were not
too far from home.

We arrived at Suzanne's apartment and, once his mask was on, I
helped Skylar out of the van. He walked as far as the stairs, but
I carried him up the stairs. It was quite hot in Atascadero. When
we all got to the door, Skylar rang the doorbell. His brother
Chris had gotten home from school several hours earlier and was
waiting for us. He was excited to see Skylar at home! The boys
hugged and we all went in.

The apartment had oxygen bottles, cases of liquid food, and medical
supplies all over the place. These had been delivered earlier that
day before we got home. I hooked Skylar up to a giant oxygen bottle
with a tube long enough to reach anywhere in the apartment. Skylar
was so happy to be home; he went into his bedroom, found a toy to
play with and brought it out to the living room.

Monday evening and during the day Tuesday it was encouraging for the
most part to watch Skylar in action. Just being home again has a
built-in motivation for him. While in the hospital he had to be
encouraged to get out of bed and do things, at home he moves around
on his own to find and play with and do the things he wants to do.
It is good to see the brothers playing together again at home.

Pam did a quick grocery shopping for some essentials. I asked her
to bring back some oranges because they appeal to Skylar. Skye and
I sat at the table while I peeled an orange and we shared some of
the sections. Pam had also brought home some sandwich fixings and
Skye also ate part of a sandwich. Encouraging Skylar to eat is one
of the big challenges right now, and good nutrition is perhaps my
greatest concern for him.

Monday evening Skylar was on the bed waiting for the pump to finish
a feed, and I was talking to him. "Are you happy to be home?" I
asked. "Yes" Skylar replied, "Jesus helped me get better so I
could come home from the hospital."

Taking care of Skylar is pretty much a full-time job for Suzanne.
He is on oxygen all the time, he is still fed and has medication
administered through an NG (nasal gastric) tube. Feeding through
the tube requires a pump and administering medication through the
tube is done with syringes that must be filled and cleaned. He still
has his Hickman central I/V line which must be cleaned and flushed
every day with heperin (sp?) and saline solution and its dressing
must be changed weekly.

On Tuesday morning I took Chris to school. He had invited me to
come and watch him perform in a talent show. I enjoyed seeing him
in action, and I know he was glad to have me there in the audience.
I also got to meet some of his friends and talk to them for a bit.
When I got home, Pam and Suzanne fixed some brunch. Skylar ate
fairly well, consuming a pancake and some orange and some juice.

Later, Pam took Suzanne shopping for more groceries and other life
essentials; it has been about four months since Suzanne and Skylar
have been home. I stayed with Skylar and we had a good afternoon,
watching some cartoons, telling stories, playing with toys. We
even got outside for a brief adventure. Skylar was able to walk
down and back up the stairs, although the effort left him out of
breath.

Pam fixed stuffed shells for supper, one of Chris's favorite meals.
While Pam cleaned the kitchen I loaded up our car and moved Skylar's
carseat over to his mother's car. We gathered in the bedroom for
hugs and kisses and to pray before we left. Then Pam and I got in
the car and headed south.

On the way down the hill to San Luis Obispo, we suddenly heard a
spraying sound from our tires. By the time I pulled off the road,
our left front tire was completely flat. I changed the tire as
quickly as I could, and we continued into SLO to see if we could
get it fixed. We got to Sears just barely in time to find them
closing up the automotive shop; I explained that we were stranded
travellers, and they were kind enough to stay and replace the tire.

The tire had blown out and was not repairable; we bought a new tire
and had it installed, and our total delay was perhaps an hour or an
hour and a half. As we headed back down the road, we were both
very thankful to God that this had not happened just the day before
while we were bringing Skylar home from the hospital. Surely, our
God has every detail under control!

Thank you all for your prayers and words of encouragement! Please
pray that Skylar will soon be able to leave the oxygen and tube
feeding behind, gain weight and strength, and resume a more normal
childhood. We will take him back to Stanford early in July for
a checkup and a complete CT scan. Please pray that the doctors will
give him a clean bill of health at that time and that the Hickman
catheter will be able to be removed soon.

"Gracious is the LORD, and righteous; Yes, our God is compassionate.
The LORD preserves the simple; I was brought low, and He saved me.
Return to your rest, O my soul, for the LORD has dealt bountifully
with you. For Thou has rescued my soul from death, My eyes from
tears, My feet from stumbling." -- Psalm 116:5-8

With thanksgiving,

-Dann (for us all)