Scarlett turns 1

Scarlett's First Birthday-
Luca had a lot of fun at Scarlett's party. He and Layna found Scarlett's christmas present- the wonderful monkey and had fun playing with it. I think they might even have shared it for a moment:) Scarlett ate her cake in her own wonderful way, she ate the entire large cupcake, steadily in about 10 mins. She seems to feel no need to rush or smash it all over her face. I can't believe she is one!!!

First trip to the ER

Title: First trip to the ER
We got to have a family night down at Children's ER yesterday (Saturday) evening. John is such a good nurse and dad and noticed a small yet real skin infection on Luca's leg on Friday (it looked a like a small hard pimple). John said, "I am going to take Luca in to get antibiotics for this so that it doesn't not turn into an abbess and need to be drained etc and go to the ER this weekend." He sees quite a few of these where he works) anyway, the Dr. said "no, it is just an in-grown hair and will go away on its own. Well by last evening (after Scarlett's big one year birthday party) the bump on this thigh had doubled in size and Luca had a fever of 101. 2. I called a friend that works in the ER at Children's and she told me there wasn't a long wait and let them know Luca was coming in. We had a great dr. who did an ultrasound on the bump and said that the bump had not become organized or collected fluid that needed to be drained but Luca did need to go on antibiotics right away to help the infection to go away. The whole thing took just under an hour (which is amazing) and it was truly to most positive ER experience we could have had. (It actually too less time and hassle than the dr. appointment on Friday that amounted to nothing). Anyway, we were home by 8 pm and Luca went right to bed and slept till 8:30 am this morning. I feel grateful once again for friends, children's hospital, and financial assistance at Children's. (even the antibiotics at their pharmacy is paid for. Truly amazing and God's provision for us and Luca)

sledding

We went sledding a few weeks ago about 45 East of Seattle with Jess, Kimi, Layna, Monica, and Lily, and my parents. It was pretty cold and windy but really pretty. I think it is something Luca will grow into (hopefully). You can see from the picture he wasn't very happy most of the time. The adults had a great time, just like old times, I love sledding!

Weather stripping the front door and Great Goodwill find

Luca and Popeye were weathering the front door last night. Luca had a great time helping!


I am so excited. I found a super warm winter coat for Luca on Monday for $2 at Goodwill. I love that place!!! Here is a picture of Luca wearing it yesterday right before we went on a little walk in the snow.

New Year

I definitely feel like it is a new year....and I am excited about 2011. As I think back to the start of 2010 I want to highlight a few things that happened last year which will in turn make 2011 a potentially good year:

2010
The house project began and got (pretty much) completed....2011 We get to enjoy living in our house

Luca had around 16 sets of casts and foot surgery................Luca will hopefully learn to walk

Luca is learning to talk...........................................................Luca can communicate with us

On-going PT, OT visits with Boyer therapists.......................Luca continues to become more indep.

Strengthened friendships, getting to know neighbors..............Stronger community

New ER job for John................................................................. Greater work satisfaction

Priority on marriage..................................................................Stronger relationship

Desire to run more (Katie).......................................................Motivation to train for 1/2 marathon

I don't want to be overly optimistic the 2011 is going to be the "perfect" year because life is just not perfect, the challenges, grief and joys come all mixed together but I can see some great areas of progress in our lives and am grateful for the areas of growth this past year.

Zoo

We went to the zoo the other day. It was clear and COLD and unlike the MN Zoo it is not indoors except for one small part where we saw the sleeping crocodile. Which was Luca favorite part. Chris took off for MI yesterday. We miss him already!

Two Years Ago...

Exactly two years ago we had our first ultrasound of Luca. We emailed many of you this:

Today we had our baby boy's first ultrasound. What we thought would be
one of the greatest days of our lives had turned out to be very
difficult. The ultrasound showed a low level of amniotic fluid and
abnormalities with the baby's extremities. Please pray with us for
emotional strength and difficult decisions we will face. It
maybe some type of chromosomal abnormality. We don't know too many
other details. Love, john and Katie

I wanted to thank you for your many encouraging emails you sent us that day.

Dear Katie and John,

We sincerely ache with you. Mom and I just prayed for you, for the baby, and for ourselves.

We'd like to talk with you, whenever you feel you can talk.

Our sincere love and continued prayers.

Dad and Mom

Hi guys,
Thanks for including us on this email. We've shed some tears for you
and are keeping you and your little baby in our prayers...I am sure
you guys have quite a mix of emotions...we pray for God's provision in
a thousand ways today.

Call us whenever you want.

Love,
Jamie and Andy

We love you. We're praying,

Mom

Oh Katie and John,

Our hearts are heavy as we read this news. Eric and I prayed for all three of you - we love you so deeply and ask God to protect this special baby boy that He has created for you to take care of. All I would want today is to be with you, hug you, pray with you, cry with you and encourage you.
I pray that the Lord would take captive your anxious and worried thoughts.

I will try to call you later just to talk, not to ask questions, but if you don't feel like talking, I totally understand.

I love you dear sister more than myself. And I love this baby with my whole heart.

Our love and prayers,

Betsy and Eric

Katie and John,

Meagan and I are so sorry to hear this news. We are praying for you, and wish we lived close by so we could give you a hug and help with the move, especially in light of this new information...We will be praying for a miracle.

Love you,

Josh and Meg

Dearest John & Katie~

This is very hard news. I am crying with you and will be praying for you and your baby. Katie I just left you a message too but if you want I'd love to come over and give you a hug before I leave for anacortes (I'm picking Nora up at 4 at my house). At any rate, know that you are all definitely surrounded by prayers and I'm hoping for an amazing dose of strength for you as you move this weekend and adjust to this development. We [all who love you] will get through this hard time together.

Love

Mari

Oh Katie and John,

Please know that we are praying for much grace, wisdom and strength for you both.

in Jesus,

Love, Janet

Hi John and Katie,

Thanks for writing and letting us know about the ultrasound. I'm sure it's a lot to process. We will be praying for you and for your baby boy. (I would have been more surprised if you wrote that it was a girl). We will pray for wisdom and God's grace. We love you and already love the little boy He is growing in Katie.

Love,

Heather and Moises

THANKS 2 Tons for calling....we love you dearly and you now that we will pray and pray and pray for your little guy and for you Katie and John...The Lord will not give us more than we can handle...but the load can get heavy. We will be on our knees as we lift you all up to our Lord.

XXOO times 3,

Dad

Hi Katie and John - my heart is breaking for you. Uncertainty is a terrible place to be. We are praying for all three of you. If you need to talk or need help or just want company at any time LET ME KNOW!

love,

Tavia (and Caleb and Magdalene)

Hi John and Katie,

I just wanted you to know that we are thinking of you and praying for you. We can't imagine how difficult this time is for you. Briant and I spent a while praying for the 3 of you yesterday. I would have called but didn't think you would want to talk to anyone yet. We love you!

Harmony

Hi Katie,

I love you, first of all! Second of all, I am praying for you and John. You must be worried and uncertain, but know that God doesn't make mistakes and your boy is perfect in His eyes! I hope this doesn't sound like I am minimizing anything. I would be just as nervous and concerned as you. I pray that He will give you courage, strength, and a peace that surpasses all understanding. I wish that I could be there to hug you and talk. Do you have skype? We could talk tonight or tomorrow night if you want!

Love you very much!

Brooke

Video of Luca getting his bike for Christmas

Pictures from Jessica

There are several months old but I just saw them on Jess's computer and had to share them. I love his blue shirt and this is before his big hair cut.

Christmas!

Luca's new bike and my new puffy coat also from Grandpa Walker and Nana Walker
John's new drill from his parents

Opening a gift

Merry Christmas!

Hello, wanting to wish everyone a very Merry Christmas! We aren't organied enough to get Christmas cards out. Thank you for your cards and packages! Can't wait to open them tomorrow. Here is Luca opening his new Christmas PJ's on Christmas Eve. John and I will have about an hour together tomorrow before he heads into work at 1:30 pm. We will get to have a little brunch and open gifts together. (There is also a picture of Luca and Scarlett at the Christmas Eve service.)

The Mountains

The other day we had a clear day (which is about one in a million right now in rainy Seattle). Here are a few pictures I took of the mts. from near our house. The zoom was on. The mountains are so beautiful and since it isn't clear often it, we are all awed by the beauty whenever we seen them even though we live here.

Cozy

Nana has defined the word cozy for Luca or maybe Luca for all of us. Reading with a soft blanket on the couch with Nana Nancy will forever be cozy.

Two Peas in a Pod

Two peas in a pod.


Layna came over this morning. They went "sledding" around the living room in Luca's new sled (which he will get for Christmas) and then both wanted to go night-night in Luca's bed. Jess and I are curious if they would actually fall asleep and stay asleep if giving the opporutnity but I don't think we are curious enough to actually try it:) (Maybe if we had a video monitor:) They are

New AFO's

Luca got new AFO's last Friday. We all call them his "boots". They are the same pattern as the last ones (just a little bit bigger since he has grown.) We are back to the three times a day stretching the feet and taking the AFO's on and off. (Which I don't like that much) Luca often asks for his boots off but then when you take them off he might ask for his boots on. I think he enjoys learning the concept of on and off right now:) My (Katie's) parents and brother Chris are here for Christmas. The arrived last week.

Some of the highlights so far have been:
John, Chris, and Kimi going skiing
Family dinners
Watching Despicable me together (the best cartoon of all time)
Luca requesting to be cozy with Nana on the couch, with a big soft blanket and reading book after book with her
running at Lincoln park
Luca getting to take lots of baths:)
Luca loving all the attention and every time someone leaves the room he asks, where that person went. (ie daddy go?, nana go?)
Katie got to sleep over at her old house with Mari and Beth!

I am sure we will do a lot of other things together this week. Chris and my parents are here until Jan. 3rd. Yay! Can't wait to see Luca open his presents. Will put up pictures soon!

Honesty

There is a lot to be said for being honest, honest with others, and with yourself. I spent some time and tears reading through a blog tonight called Team Ewan. Ewan, mom, Kristen shares her heart and story of her dear son, who lived only a short time. She shares honestly about her faith, pain, hurt, struggle, fears, joy, and life. http://www.team-ewan.com
I know there are a lot of different people who follow Luca's blog and I write to this unknown audience, wanting to make sure I don't step on anyone's toes. So I write mostly about all the good stuff, the light stuff, the things that are easy to celebrate (and with Luca there are A LOT) of those. But I also shield my blog and readers from some of the hard stuff. I decided a while ago that I want everyone to enjoy reading it but I realize that you wouldn't truly know Luca's story (or ours) if you didn't know the pain too. John said it well the other day, "you don't truly know joy until you know pain"
I am going to try to be more open and well rounded. I don' t want to give a false image of rose colored classes, that raising a child with special needs is just easy and delightful all the time. There are huge joys and lots of obstacles. So I am going to try to put my people pleasing ways behind me and write from the heart. If you don't like it, that is ok, there will still be cute picture of Luca on it for you to enjoy:)

Early Christmas Present

I couldn't wait to give Luca his new train set from IKEA. I have wanted to get him a train for a long time because he loves the ones at Barnes and Noble but I just never go to IKEA and that is the only place they are $8 so anyway, I got a set, I pulled it out today. Luca loves it. He needs a little help but tries to do as much as he can himself. He says "self" because he always wants to try it (a few times) before asking for "help please". So sweet.
When we left for Layna's birthday party Luca said "bye-bye train" many times and was eager to play with it right away when he got home.

On the go

Luca is a moving and much faster with these little casts. He scooted two blocks yesterday...which took quite a while but still pretty impressive. I think Luca's middle name is outside which suits me just fine. He was so happy to be outside, I could not get him to look at the camera.

New short casts

We are enjoying Luca's short walking casts. He can't bear weight on his own yet but he can stand for a little while if prompted against the couch or a chair. He loves being able to scoot better, and faster, and being able to stand more easily. One more week till we get his new AFO's! His casts are still to bulky to put shoes over them so his casts are pretty slippery on the floors.
John and Dr. Mosca was very happy with how Luca's feet looks. (I wasn't at the appointment) His feet look much straighter but also are much stiffer. (remember the goal according to Dr. Mosca for Luca t0 have stiff straight feet in the end). Mosca used Luca's feet as his case study at a conference for foot dr. in FL. He was very proud to show the other doctor's Luca's success. We are praising the Lord!

NEW WALKING casts today

We are very excited about Luca getting new walking casts. Not sure what they will look like yet but we will put up a picture later. It has got to be better than the long leg casts. He is so eager to stand and walk. He has put some nice racing stripes in his current casts, they are pretty trashed after three weeks:)

Christmas tree, O Chritmas Tree

Luca's reaction to the tree what hilarious. He keeps looking at the tree and saying, "nice", "nice", "nice" over and over again. I think he likes it:) We went to a local hardware store, Maclendan's last night and found this tree. It was also on sale which I am always happy about. It is so fun to have our own first Christmas. It is the first Christmas since we got married that we aren't traveling to someone else's house. It is a lot of fun to be home for Christmas.

Luca's slide

John made a slide for Luca in our driveway with old cabinet parts. Luca had fun and I caught a great big smile at the end of the slide! We had a great afternoon together. And we got a Christmas tree this evening. I will put up some pictures when it gets decorated.

Surgery cost

We are thankful once again that Children's has given us financial aid again this year. I got the statement from the insurance agency today from Luca's last surgery. $27,000. The insurance said they would cover $3,000. Wow, that would have been painful. Thankful for Children's Hospital and God provision once again.

Accomplishment of the year

I (Katie) went successfully running with Luca at Lincoln park today. I know that it isn't really that big of a deal but it has been something I am hoping to doing on a regular bases for a LONG time. Last time I tried to run with Luca was maybe last year and a total disaster. I am optimistic that we have turned a corner and are now able to do this activity together. Luca loves to looking at the boat, dogs, and to go fast in the stroller. There is also a long swing ride in the swings at the end of the run for Luca.

wonderful coincidence

Yesterday, Luca had an appointment at Children's to have a hand dr. look at his thumbs and hands to see if a surgery could help his function increase. The dr. isn't quite sure about the answer but is consulting another dr. we have been in contact with on the east coast and will get back to us about their thoughts and recommendation.
The cool part about our trip to children's was that our friends, Chip and Becky and their son, Joshua, who also has AMC, also had a 4 pm appointment yesterday at Childrens. They live a few hours away from Seattle so we don't see them very often. We got to have dinner together and visit after the dr appointments were over. Joshua and Luca are both very happy, adorable little boys. We are glad for the chance to visit with another family going through this similar exciting and challenging journey. It would also be cool for Joshua and Luca to been friends. Wish i had taken a picture of the boys together. Next time I will.