Dec 23, Christmas dresses on a rainy Sunday

Sunday, 10:30 pm.
Very wet Sabbath Day. We don't get rain like this in Oregon.  It rained and even poured all day. It was wonderful.  All the kids got to wear their new Christmas outfits to church. They were all looking sharp. Greg and Candace Osborne spoke today.  They did a great job. Also, the choir sang several songs.  All relating to the life and love of our Savior.  Lots of families there together for the holidays.  Really missed having our Lindsey in church with us.   Still feels really incomplete without our #3 child sitting with us.

Tonight was my Mom's annual Christmas piano recital.  This year they did it at our house. They sent us a picture of our home being used. Nice to see it still standing.  Mom and Dad are doing a great job keeping it up.  Stacy didn't want to see the picture of it. I don't blame her.

I won't hide it, tomorrow will be hard. It is very difficult to make plans when Stacy and I are never alone, even if it is just to talk.  We have deep family traditions, and this year will be different. I know it will be a special holiday, one we will never forget, and probably will cherish the rest of our lives. But still.......we were hoping...and still are.... Anyway, as long as Stacy and I (and the nurse) are up for it, it will be fun and special for the kids.

Enjoyed the comments especially the Santa letter from Stacy's niece, Kambrie. Thank-you!

Yes......., I know how lucky I am!

Yeah, they did a dressing change today. Still looks about the same.

This is 'Shella' the pinata for our party on Christmas Eve. This is a tradition that goes back in Stacy's family. Lindsey made this in her PT sessions, with some help from her siblings.

Sunday afternoon finger painting

This part was REALLY funny. Gage and Hunter taking care of Mom's toes!

While I was in Oregon last week (of course), Willie Mays, as in THEE Willie Mays, paid a visit to the LPCH. Lindsey met him and received a signed baseball (which is now high above the reach of young boys).  I thought this was pretty cool. 

Dec 22, Day 186, Replacing the feeding tube X3

So last night was un-fun. It took 3 separate tries, 3 separate nurses, 2 x-rays, and lots of tears to get her feeding tube back in.  At 3:30am we finally went to sleep. I wish I was exaggerating, but I'm not. Just as we would drift off hoping the tube was placed correctly, they came back and told us it had coiled and had to be redone. The tube does NOT go in easily, lots of lube, lots of crying/screaming, and even vomiting.  It really was no fun! The 3rd nurse was the one who finally got it placed correctly. Anyway, that is in the past.  We all hope that is last one till transplant.  We are all going to protect that feeding tube like it was a Christmas Eve tube at Little Alps.

This morning I coached Sierra and Megan's Lightning Basketball game. Basically, we got taken to the 'wood shed' and whipped on real good. Like 37-6 whipping!  Yes that was our first loss, but.....it was obvious that team had practiced more than just once a week. It didn't help that I couldn't remember the girl's names when we were running plays or giving instruction.  I had to have Sierra or Megan sit by me and tell me their names.  Anyway, we had fun...I guess.

Spent the rest of the afternoon in Lindsey's room. This room is feeling pretty small sometimes.  Stacy and I are coming up with ideas for Christmas day.  Hopefully we will have a good nurse who will let us get out of her room a bit and get around. Also thinking a lot about how to keep up with our Christmas family traditions. For tubing on Christmas Eve we will have to get pretty creative.

As always, thank-you for your comments.
Till next time, Jason

Dec 21, Megan and Hunter's turn

Back in the groove today. Kids had their last day of school before Christmas break.  Pajama day at Jordan and Nixon, so the kids went pretty casual today. My Dad flew home today and I went to the office for a bit.

At 1:00 Hunter and Megan had their 6 month checkups. They both had echo's and EKG, we met with Dr Seth Hollander. So you want to know how their reports were, well so did we.

After the appointments, and some time in the play room, we went on a family outing to the blood draw lab. After meeting with the geneticist, they want to draw some blood on the entire family. They have not given up on the genetic testing and want to take a different approach.   So, for 'family night' we went for a walk to the Stanford side to get our blood drawn.  What made it fun was everyone got poked except Lindsey.  She got to sit around, take pictures, and coach everyone on how to get poked. Stacy was first, then Dad, Sierra, and Gage.  He wasn't crazy about it but it went okay. Megan was next, and we ALL loved watching it!  It was the first time in her life she had been poked for blood.  She turned quite pale and was a bit scared but kept it together.  Lindsey filmed the whole thing and Sierra had a smile on her face. Last of all was Hunter, he went in screaming but it was over before he could throw much of a fit.

After the excitement, we came back to 3 West and met up with the Gee's.  They are the good friends from 6 years ago that helped out so much when we didn't know a thing about the area. They have 2 really good kids, Kerby, a senior at Palo Alto HS and Kerry, a junior.  They are great examples for our kids to look up to.

So that brings us to tonight. It is currently 10:45 pm and Lindsey is in a heck of a situation. She asked the nurse to crush up her Magnesium and put it down her tube, because the pills are a bit tough to swallow. The nurse and I warned her and said it might plug up the line and she would have to get a new tube put in (NOT FUN!). Lindsey said that was okay, the nurse could just replace the tube. The nurse warned her again, and Lindsey said go for it. So now it has been over 2 hours and the nurse is trying to get the plug out of the tube. LOTS of tears are flowing, but she is accepting her decision. They are trying one more med, that might dissolve the plug, but no guarantees. May be a long night if they need to replace the tube.  Tell you what, this is a great lesson in accepting the consequences of your decisions. Just another life lesson learned from this experience.

We are all a little bummed, we were hoping Stacy's Dad could come for Christmas, but he has become very sick and won't be coming. To bad.

 Our world.  No where else to decorate.

 Megan getting really serious as she watches the Master get poked.

 Gage's turn

 "Oh-yeah, no pokes for me!"

 Megan psych'n her self out just before the poke. We were all loving it!

Kerry and Kerby Gee with the gang

Oh....And the test results. (You thought I forgot) Megan and Hunter are unchanged.  Both still have the slight irregularities, but still within normal ranges. No meds and they will see them again in 1 year. They are showing NO signs of heart failure like Gage is. All their questions were easy to answer.

Finally,
What did the Zero say to the Eight?....
Nice Belt (courtesy of Sierra's friend)

Dec 20, 6 Months Today and Gage's appointment

Jason here.
Well it's been 6 months today. A bit of a mile stone, what a trooper, and now we are lookin' for more! Lindsey spent a lot of time on her own today. I took my Dad to Walnut Creek to see a client, and Stacy went to Hunters class.  Lindsey did good hanging out with her nurse Shannon.  At noon today, Gage had his 2 month check up. Actually went well. His heart condition is unchanged from October and good to go until his next checkup 3 months from now in March. These appointments are always hard for me.  Stacy was gone to Hunters class so I was riding solo. For the Nurse Practitioner to get an understanding of how Gage is doing clinically, they ask a bunch of questions (all relating to heart failure), went something like this,
"Does he eat well?" 
  "No, not really, about the same as always I guess".
"Is his feet and hands cold?"
  "Yes sometimes, I  notice it on him more than others".
"Does he sleep a lot?"
  "Yeah, he does take naps, more than he used to"
"Has he been sick, or had tummy pain?"
  "Yes, he was pretty sick a few of weeks ago, but seems to be better"
"Has he had a cough that doesn't go a way?"  
  "Yes, since his RSV when he was a baby, his cough seems to hang around more than others."

Questions I had,
"Is he gaining weight?"
  "Not really, he is in the 21% down from 25%. His weight is unchanged from October at 15.2 kg. (33.4 lbs)"
"What blood type is?" (lets get the sticker shock over with)
  "O+" (Lindsey is O-) Both are the hardest blood types to match up with for transplant (there is a yippee-skippy moment for ya) (Sierra was an A, and waited 21 days)
"How is his pacemaker working?"
  "Great, his lower ventricles are riding the pace maker 100% of the time, the top is riding the pace maker about 10%" Meaning he is fully dependent on the pace maker. (another yippee-ki-yeah moment)  At this rate his pace maker will need to be replaced in about 2.5 years.
"How did the echo and ekg look?"
  "About the same as last time, no significant change in either direction"  (that's good)

All the above are signs of his heart failure. Right now it is unchanged, and that is good, hopefully with the medicine he is on and a new one added, we can keep this at bay for years to come. Currently he is on 5 meds / supplements.
 
Most of the time I find myself trying to deny there is a problem. I can't wrap my mind around the idea that he is really in the early stages of heart failure and DCM. Today while the Nurse Practitioner was asking me all those questions and more, I started to break down.  These are the days you have to face it!  The thought of having 2 kids with the same heart disease and the same rare blood type, just got to me.  Will we every get back to Oregon again? That is the hope isn't it!  Stacy is so strong, I have to be strong.  They caught it early, he is on all the meds and supplements he needs to be on, he is doing great, and is in good hands.  God is in control and will not allow us to be tried more than we can handle.  Look how well Sierra and Lindsey are doing? Lindsey is rewriting the book for Berlin patients. We are blessed, and I thank God for that every night.

Gage really did have a good appointment, sometimes the reality of this sinks in.

Meantime, Gage was having a fun time playing on the ipad, and Lindsey was upstairs in the playroom playing the wii with Shannon.  I am taking Dad to the Oakland airport in the morning.  Tomorrow is the kid's last day of school before Christmas break. Also, tomorrow, Megan and Hunter have their heart appointments. We will find out how their hearts are doing and what blood types they have.   

Happy 6 months Lindsey, we are one day closer!

Our friend Dina with a "Heart Mate." A device like the Berlin only for bigger people.  They can go to the Ronald McDonald House with them. She was being discharged to the RMH.

 

Below: Lindsey's sweet friend Colette that she met at the hospital school, at the beginning of the school year.  She has come back twice and visited Lindsey.  She is a very good friend and we look forward to her visits.

 

Dec 19, Wednesday, All back

Jason here.
She is fine.
My Dad and I left at 4 am and drove down safely.  Good roads.
Young Women from the church came over, sang and played games with our kids. Very, very nice of them!  I'm tired.
Good to be together again.
Full report tomorrow.
Good night : ]=

Dec 18, Update From Lindsey Lou

Lindsey Lou  here, Mom typing.  Today in school I worked on a "special" project for Christmas. It is half way done.  I went to therapy at 1. I did an obstacle course and played the wii.  I really want my heart please! I am really excited for my Dad to come back tomorrow.  I got to Skype my dad today. I am really, really excited for Christmas.  Are you excited for Christmas?  Chloe is doing good, her Dad is here right now talking to my Mom at 10:15.           Love Lindsey  Lou Bingham