Tuesday, February 25, 2014

13 Months

Dear Evan,
How is it possible that you are already 13 months old.  You are a mama's boy for sure.  You are quite attached to me, but you do like your daddy too:).  Hannah is still the one that can make you laugh the hardest.  She will do some really random things and you will just laugh with the biggest belly laugh.

You are always busy and constantly on the move.  You are working on walking, but still prefer to crawl.....it's still faster.
That doesn't stop you from climbing on everything.  I have to keep an eye on you at all times and even with that you manage to climb on things.  Some of your favorite things to climb on are Hannah's step stool and rocking chair, dishwasher and using drawers as steps (we need to make sure that absolutely everything is bolted to the wall).  We were at Jennifer's house the other day and I look over and you had climbed into a little toy shopping cart (at first I didn't believe that you did that on your own, but then you did it again while I was watching).

Standing on a suitcase about to pull the drawers open to get even higher
On a step stool emptying a drawer
On the rocking chair trying to open a door
Climbing in and out of our TV console

You love to close doors and now you can reach door handles and can open them if they open in, but you also fall in with the door when you do it.  You are good at climbing up the stairs, but you haven't figured out to go down backwards.....you go backwards for one or two steps and then you turn around and want to just go down on your belly.

You are obsessed with lids.  You will play forever with a coffee cup and lid, a pot and lid, a sippy cup with lid, a little jewelry box that has a lid ect.  You take the lid off and put it back on and repeat that for a very long time.

You are starting to copy behaviors and pretend to talk on the phone, brush your hair or teeth.

You are perfect the way you are (except for your sleeping)!

We love you!

Friday, February 14, 2014

Update from Scott

We have now been home from Madonna for 2 months.  I am slowly adjusting to "normal" life. As of today, my hands and feet still feel like they are asleep 24 hours a day.  The tingling does slow with medicine (17 pills a day), but is always still there to some degree.  My hands have progressed the most as I can now type, drive, and feel pressure.  My feet are still a work in progress.  The other night I must have kicked Evans water bottle under the crib, but because my feet are so numb I did not feel anything. Katrin can rub my feet at night and I cannot feel anything. I really rely on my medicines for my feet.  I am regaining muscle, but this process takes a lot out of me.  I get tired so much easier than I used to.  I feel unproductive as I have to nap almost every day. It's funny a nap used to be a guilty pleasure that you did to reward yourself.  It's not the same now when I have to nap just to make it through the day. It's more of a chore than a pleasure.  It's a strange feeling when you get tired from tasks you used to take for granted.
That being said, I am very happy to be home.  I do not want to focus on the things I cannot do, but more on the things I can do.  I have been going to the gym and working out 5 days a week.  One of my main goals is to actually participate in the GBS 5K they are doing for us in Lincoln in April.  Every doctor I have ever seen has told me it will take at least a year to be able to run and play sports.  This only motivates me more to actually run in the 5K.  Even though I cannot feel my feet, and currently have to keep one hand on the treadmill, I have ran a 5K already.  My times in fact improve every week.

  I will run in the 5K and will be competitive when I do. If you are going you better train as you do not want to lose to the "patient" you are there to support. Katrin thinks that I overdo it at the gym ,but this is just the way I am wired. I feel you need to push as hard as you can if you want to improve at anything.  
The best part about being home is my family.  Katrin has been the most amazing wife and mother throughout this process.  She understands that I am still recovering and always gives me the time I need to rest. She is also always willing to do anything to help me.  I might take advantage of this by asking for homemade waffles or a backrub, but isn't that what you are supposed to do when you are recovering from something.  The kids on the other hand, are just glad to be home and glad that dad is back.  Hannah is constantly hanging on me and asking me to play "baby".  I love it.  She is the joy of my life. She is also a great "big sister".  In fact, her "big sister" dress is her favorite dress.  Last night she helped me bathe and get Evan ready for bed.  What would normally take me 20 minutes, took closer to 45 as she insisted on putting on his diaper and getting his pjs on herself.  That was not an easy process with the squirmy Evan.
Evan and I have developed a very close relationship.  I just love his energy.  Spend an hour with Evan and you will feel like you had a day workout in the gym. He just never stops moving.  He is into absolutely everything.  He is a climber and you have to watch him 24/7.  He is also a lot of fun and the sweetest little baby in the world.  The other day he chased Hannah around the kitchen trying to get one more bite of ice cream sandwich. It was the cutest thing I have ever seen.  I just hope he never loses this energy.  Evan is all boy and Hannah is all girl.

Overall, what I went through with GBS, is something I would not wish on anyone.  It was the hardest thing I have ever been through in my life.  It also though brought me clarity on what is important.  I watched my family as they divided up time so that I was never alone for weeks at a time.  I saw Katrin and the kids move to a new city and adjust without ever complaining.  I know Katrin does not like hospitals or sickness, but she came to the hospital to see me for hours every single day with the kids.  While no one can control health, we can control how we deal with a family member being sick.  I am so proud of my family and feel closer to them now than I have ever felt.  Katrin is my soul mate and she was there for me in a very dark time of my life.  I love Katrin and my kids more than ever.  I also have a entirely new respect for Katrin's mother.  She flew from Germany to be with me while I was sick.  She would sit in that hospital room for hours and would stretch my legs trying to help me regain feeling.  She is an amazing person.
Lastly, I saw how much my family is there for each other.  Katrin and I talked the other day about my family and how they all came together when I was sick.  Allison came in before and after her 12 hour shifts at the hospital.  Ashley came over from London for a week and sat next to my bed every day when I was completely paralyzed. Amy drove from Garden City to Lincoln and Brian offered up his house to Katrin and the kids. My parents drove hundreds of miles on weekends just  to watch me in rehab for a day.  Megan and Barry had their entire lives changed as we became fixtures at their house for months at a time.  My whole family came together because one of our own needed us.  This show of support makes me only want to have a larger family.  The larger the family the more support one has in a time of need. I just hope I get a chance to thank every single person who was there for me as without the support I would not be where I am today.

Thursday, February 13, 2014

Evan's Winter One-derland

We were so happy to finally celebrate Evan's first birthday.  It was a fun Winter One-derland celebration with friends.  Hannah was my little helper all morning getting ready for the party.  She wanted everything to be beautiful for her brothers party.
Hot Chocolate Bar with lots of fun toppings
Cup of Cheer

Mimosa Bar

The beautiful and yummy cake
Evan's smash cake
Snowman cake pops 
Party Favor (book for the kids and mug with hot chocolate for the adults)
The birthday boy
A rare family picture
And finally digging into the cake......
Happy first birthday sweet boy.  We love you!

Sunday, February 2, 2014

Wait And See

We talked to Evan's doctors this week and received some answers.  We are going to wait and see.  I was a little unsettled with these news at first, but now I am at peace and know it's the right decision.  At first I wanted different news and expected them to tell us how they are going to fix our little boy (even though I was terrified of surgery).  We still have a lot of questions and will meet with the doctor on the 13th, but we know that the plan is not to do anything right now.
Evan has been on blood pressure medication and his body responding good to that, so he is not considered to be at any risk right now.  We have to continue to get his blood pressure checked on a weekly basis.
The doctors found some scar tissue in his renal artery from the blood clot he had as an infant.  The scar tissue is restricting the blood flow to the kidney, but there is still a little bit of blood flow (they couldn't detect any at first on the ultrasound).  The hope is that as he grows the artery will grow and open up and allow more blood flow to the kidney and let it grow.  They can't stent the artery where the scar tissue is, so there is no reason for a risky surgery right now.  Unless his blood pressure rises again they will do another ultrasound in 6 months and see what the kidney looks like.  They may still need to do surgery at some point, but they would like for him to be a little bit older.

We were finally able to celebrate his first birthday this weekend with friends.  I will post some pictures next time.