Friday, January 4, 2013

And like that. . . it's over.

2013.  Hard to believe it's 2013.

We saw a lot of amazing things in 2012, just as we see lots of amazing things every year.  I anticipate many amazing things happening in 2013.

Some Highlights:

Peter starts the year off with a bang and has an emergency gall bladder removal and is in the hospital for 5 days for a bad infection. 

Tray gets his long awaited heart transplant the day before Valentines Day!

Sergio defies the doctors and remains infection free with only one stay due to a medical error by a doctor.  He continues to remain hospital free. 

Marriela has become the most stable we've ever seen and is truly enjoying school this year!

Cody has grown in leaps and bounds and has made amazing progress in his school work.

Annette moved out in July and has found herself loving life as an independent young woman. 

Joshua has recovered fully from his huge surgery but continues to seize.  He is happy and that's all that matters to me.

I managed to put a knife through my hand just before Thanksgiving and needed to have my tendon reattached.  I'm still in therapy and though it's not going as well as we had hoped, I still have a thumb and will have use of my hand even if it's not perfect. 

Peter and I enrolled full time in school and found we both love it and the competition to see who was a better student resulted in us both getting 4.0's for the semester. 

I have applied for a large grant to help cover some of the costs of school so we don't get buried in loans, but if I don't get it, I'm ok with whatever it takes to get back to work!

And that brings us to 2013:

This year will bring yet another surgery for Joshua.  It will not be an open skull surgery, but rather a small catheter will be threaded through a burr hole in his skull to the areas causing the seizures (or so it is hoped).  Then they will heat it up and destroy that small spot and with it, the seizures it caused.  I am highly reluctant to go for yet another treatment and hospital stay, as they have all been for naught.  But, if we didn't do it, I'll always question myself with the "what if's".  So we move forward and await another PET scan and another meeting with the neurosurgeon.  In the mean time, we add more meds, increase more drugs and continue to give him rescue meds to stop the seizing once it starts.

Sergio has surprised us all with not only his health, but he is now tolerating feeds through his GI tract!  This is a truly amazing advancement by our little man.  He was so skinny before on just the TPN and had minimal growth, and now. . . he's 5 pounds heavier (and it shows!) and has grown 2 inches.  He has more energy and has successfully fought off several illnesses that would have landed him in the PICU previously.  His IVIG is definitely working for him.  He can play Twinkle Twinkle Little Star on the xylophone without any assistance.  He "sings" the part of Bohemian Rhapsody where they say Mammmma, ohhhhhh.  LOL  He understands so much and the ability to communicate is so close to coming as well we can't wait to see how far we get in 2013.

Marriela has made some very nice progress in her play skills and her ability to relate to her classmates in school.  She had a rough start to the year, but that was all 2012. 2013, however, has been great and I see it continuing.  She asked for, and received, a "reborn" doll for Christmas.  She has shown some nice "mommy" skills that she did not previously have.  She often talks about when she has a baby (Lord help me!) and even says I hope I don't through it down the cellar - which is what she does with her dolls when she can't do something.  LOL  Thank God she's only 10 so I have many, many years to worry about this.  Overall, she is doing well and we're pleased with her current treatment plan.

Cody is such a sweet baby boy.  He tries so hard in all he does.  He hates to be yelled at and has a very sensitive soul.  His teacher called today to say he did very poorly on his spelling test and she didn't want him to see it before she talked to him and assured him she'd call us so we would know, "he tried hard".  Everyone that works with Cody knows he wants to please and do well.  It's awesome to see that acknowledged.  I only wish things came easier for him.  His school demands will only get harder in 3rd grade and I don't want him to ever dislike school.  He is now in Jui Jitsu (Brazilian martial arts) and LOVES it. He is a natural.  Skinny, tall and moves like a monkey and never sits down.  He has all the right traits to excel in this arena and he loves it.  He is also finishing up basketball at the YMCA and I am afraid he has completed all he can get out of their programs.  He's ready for competition and skill building now.  Athletics will be his strongpoint even if academics aren't.  Again, it's all good with me if he's happy.

Tray is almost to his one year anniversary of his transplant.  One year!  It's unfathomable to me that we have put almost 12 months between us and that scary and exciting day.  The preparation, fear, and acceptance for that day to come and happen was beyond words.  Now, to see Tray, I can't say enough about his amazing journey.  Unfortunately, Tray now struggles with who he is.  He's not the "oxygen wearing, IV pump carrying, needs a heart transplant" kid.  He's now a regular 14 year old boy who has to redefine himself.  This is the hard part if you ask me.  He seems lost and can't seem to find his footing.  He's struggling in school, he can't seem to find any friends, and he's getting mouthy with adults.  Much of this is normal teenager crud, but a lot is not having a good sense of who he is anymore and we're at a loss on how to help him.  So we signed him up for Kung-Fu which he loves.  It gives him physical and mental challenges to work on.  Yesterday he called to say he was staying after school to try out for the 8th grade play.  How exciting is that!?  I pray he gets a part and he finds a new area to branch out in.  But my sweet boy is still here and we see him more at home than others do.  He is happy at home, where it's safe so we aim to make the year 2013 the year Tray learns who he is and finds joy in that amazing person. 

Annette, oh my.  We let her go.  She moved out.  It was hard and easy.  It was easy because she had prepared for that day since she was 16 despite reading only at a 3rd grade level, can't tell time and doing math at a 1st grade level (if that).  But she has no lack of determination, a powerful sense of independence and unlimited self-confidence.  It was hard because I knew there were cruel lessons life will have to teach her.  I don't want her self-confidence to ever waiver.  So far, she's weathered a few bumps and has taken them in stride.  She hurt her shoulder and was out of commission for a bit but, refused to let it keep her down.  She stayed here for all of 6 hours after a cortisone shot and then asked to go "home" so she could rest.  I was sad, I was looking forward to taking care of her.  She didn't need me.  But at Christmas, she came for 5 days and it was wonderful!!  I'm proud beyond words of the young woman Nettie has become.  She wasn't suppose to live another week when we went on our emergency Make-A-Wish trip in 1995.  She not only made it, but has thrived ever since.  Seems to be a running theme with my kids. . . tell them the end is near and they will flat out make sure it is not true. 

Peter and I talk about kids and if we're committed to closing the door on any more.  I had thought I was, but I can't say for sure.  I guess we'll see what God has in plan for us and where our new found skills and degrees take us in life. 

I find myself in therapy and frustrated by a potential "limitation" in regards to my hand.  A split second poor decision has resulted in a virtually unusable left thumb.  I didn't realize how valuable this appendage was until I was forced to do things without a thumb.  The surgery was less than successful at this point, but I've increased my treatments and we've added some (not so pleasant) treatment options to try and regain all that I can.  I will be a very successful hitchhiker though!!  LOL 

I hope this finds everyone else as excited to start the new year.  We are forgetting those things that are best forgotten and remembering those things worth remembering.  We will fight the good fight for things worth fighting for, but will lay down our arms when we find that continuing is counterproductive to a happy life.  We aim to stay healthy, but our motto is to Stay Happy!! 




  1. Good luck with School! You are setting a great example for your kids about the benefits of lifelong learning!

    1. Thank you!! We both really like school and it's fun to tell the kids they need to be quiet, mommy and daddy are doing homework! LOL