Our baby is growing up

Lilypie First Birthday tickers

Our little boy is growing up....

Lilypie Fourth Birthday tickers

Our princess is growing up....

Lilypie Kids Birthday tickers

Tuesday, December 25, 2012

Christmas in Sunriver

For the first time in 6 years my whole family was able to get together for Christmas.  We met at a vacation rental in Sunriver Oregon, which has been one of my favorite destinations since I was a little girl. It was so fun to take my children there.  There were a few feet of snow on the ground when we got there, and it was a blast playing in it.  We went sledding, swimming, shopping, played games, saw Les Mes, ate lots and lots of great food, and had fun just being a family.  Here is our trip in pictures:

Hannah enjoying the snow
 Liam loved the snow too
 Playing with cousins in the snow

 The house
 Liam all tuckered out after playing in the snow.
 Driving Papa Ron's truck
 This is what a Christmas tree looks like when 5 families worth of presents share the tree.
 Opening their Christmas Eve pajamas
Christmas Eve snuggles
There was a trend of daddy's falling asleep with their little ones.
What Santa brought our kids: A vanity for Hannah and a drill set for Liam
 Something isn't quite right about this picture, can you find the floating foot?
 Enjoying her new toy.
 Good thing Santa brought this drill set for Liam because he spent the rest of the trip fixing stuff
 His favorite part of the festivities was access to all the chocolate
 Hannah with Alaina and David on Christmas morning
 I just adore this Church Bag my sister-in-law Rashell made Hannah.
Pictures after Christmas Brunch
 I have taken countless pictures over the years in front of these trees.  Fond memories I tell ya.
 Reading their new books
 Playing Hannah's Cupcake game.  That was a hit with all the cousins.
 Sledding
 So fun
 You're never to old to be a kid again

As you can tell we had so much fun with my family for Christmas!  Love the Holiday's, love my family, love the snow, just lots and lots of love all around.  Hope you all had a Merry Christmas!

Monday, December 3, 2012

Princess Birthday Party

Hannah requested a Princess Birthday Party, so that is exactly what we did.  For her present from us we got her a pink princess dress and crown to wear to her party and all her little friends wore princess dresses. We played princess themed games like "Pin the Kiss on the Frog" and they each decorated their own crowns to wear.  Hannah had a blast and all the little girls loved being princesses for the party.

Opening up her presents from mom and dad


Princess Birthday Party

All the Princesses eating their treats
The Birthday Princess
I made the cupcakes and they actually turned out kinda pretty

 Hannah blowing out her cupcake
 The family
Eating their cupcakes
Pin the Kiss on the Frog
Opening up presents
She was super excited

Happy Birthday Hannah!  We are so glad you had a wonderful  Birthday full of friends and fun!

Hannah Turns 4!

Our sweet Hannah turned 4 years old today.  She is growing up into such a beautiful little girl.  For Hannah, age 3 was about recovering from her terrible illness by relearning to do things again,  she wasn't able to truly be a 3 year old.  Age 4 is going to be a time of real growth for Hannah because she won't have to worry about learning to walk, talk, and eat again.  She will be able to be an active and loving 4 year old girl.  I love the little girl she is and can't wait to see the things she will accomplish this year.

Favorite Things
She loves playing with her baby dolls.  She loves purses and putting little treasures inside to carry them around.  She loves to get dressed up in some crazy outfit and say she is going to work.  She loves dressing up in a beautiful dress and dancing.  She loves playing outside.  She loves to color and draw.  Her little arms shake and make it difficult to be accurate in her coloring, but she still loves it.  She loves to sing and read books.

Favorite Foods
She loves cereal and would eat it every meal if I let her.  She loves grilled cheese, pizza rolls, ice cream, cupcakes, peanut butter and jelly, macaroni and cheese, apples, raspberries, manderines, spaghetti, and corn.

Preschool
She has been going to preschool since October and loves it.  She has made some great friends and has become more outgoing in social settings because of it.  When I ask her what she did at preschool that day she usually tells me what she ate for snack, but sometimes she goes into detail about playing in the gym and riding a bike, or playing with some friends and a dollhouse, or some other highlight from her day.  I love listening to her talk.

Favorite Animal
Giraffe

Favorite Color
Pink

Favorite Show
Mickey Mouse Clubhouse, Little Einsteins, Mickey's Christmas

Potty Training
Hannah wasn't quite potty trained when she got sick a year ago, and with her illness teaching her to use the potty went on the back burner.  In December she became very interested in the potty and can now stay dry throughout the day and night, we just have to work on going #2 in the potty.

Dressed up and dancing with Baby Howe

 Coloring
First Ballet Class
 First day of Preschool
We are so proud of our Hannah.  Not many people can be challenged so overwhelmingly and still keep that sweet and spunky demeanor.  We love you Hannah girl!!

Singing Happy Birthday

Sunday, September 30, 2012

Phone Photo

We have been playing outside every chance we get because soon the rains will come and the sun will leave Seattle for a time.  I snapped this picture of Hannah on my phone while we were out on one of our outdoor adventures.  I love the way the sunlight is radiating above her.  The same way her joy radiates to everyone around her.  We love our beautiful, strong, and brave girl.

Tuesday, September 25, 2012

Treatment and a Miracle

We had an appointment with Hannah's Neurologist in July.  She was very happy to see the progress Hannah made, but was concerned that she wasn't completely better yet.  They expected her symptoms to resolve within a few months, and here we were 6 months later and Hannah was still trying to gain enough balance and coordination to walk.  She mentioned a couple of treatment options that might speed recovery.  IVIG or steroids.  Steroids never seemed like a good idea to me.  Part of Hannah's illness has included emotional instability that made her irritable, sometimes inconsolable, and not sleep very well.  All of which are possible side effects of steroids.  IVIG I didn't know much about, so we told her we would think about it and get back to her.  IVIG stands for Intravenous Immunoglobulin.  It is basically antibodies pooled from thousands of donors and administered through an IV.  I was hesitant to put Hannah through any treatments because she had been through so much and because there was no guarantee that it would work.

IVIG is an antibody replacement therapy that is usually given to patients who are immune deficient.  Because Hannah's condition is so rare (like 1 in 10 million), there haven't been many studies on the benefits of IVIG and Post-Viral Cerebellar Ataxia.  I did some research on it, and we prayed about it, and started to feel good about trying it.  And then the answer I had been looking for came in the form of a really bad flu.  In early September, Hannah got very sick with a fever, vomiting, lethargy, and congestion.  When she got sick her Ataxia (shaking, incoordination) got much much much (did I say much yet?) worse. All the progress she had made since January seemed to vanish overnight.  She could no longer walk, she couldn't talk very well, and she was sleeping all day long.  It was terrifying because it seemed like we were back in the thick of her illness again and we didn't know how long it would take her to recover this time.

The only thing that brought me comfort was the fact that her neurologist had warned us that if she got a cold/flu it would make her Ataxia symptoms more severe.  So we watched her and worried and nursed her back to health and gradually, as she recovered from the flu, the severity of Ataxia decreased too.  Getting sick was the answer we needed because we could see how when her immune system got kicked into high gear to fight off whatever virus was making her sick the autoimmune attack on her cerebellum also increased which caused the Cerebellar Ataxia to get worse too.  So we contacted Hannah's neurologist and scheduled and IVIG treatment with the hopes that the influx of antibodies would in turn tell the immune response on her cerebellum to back off.

On September 13th we took Hannah to the hospital for her 6 hour long infusion of IVIG.  As hard as it was to stand by and watch the nurses place an IV in her tiny arm, it was even harder to keep Hannah from looking down at it for half of the day while the treatment took place.  She was so scared, but as soon as we explained to her that it was medicine to make her all better she calmed down and was very interested in all the numbers and beeping.  As always, she handled everything like a champ.  We took her home and waited to see what kind of reaction her body would have.

The next day she seemed fine so we took her to Physical Therapy.  She only lasted 30 minutes before she tried to take a nap in the swing.  She fell asleep in the car on the way home and slept for 4 hours.  When she woke up she vomited a couple of times and had a bit of a fever.  They told us that flu like symptoms were a possibility, but it was still hard not to be concerned and hope that we did the right thing.  In a couple of days she was back to normal and we were starting to see improvements in her Ataxia.

It has been 12 days since she received IVIG and we feel so blessed to tell you that the treatment is working.  Hannah isn't just walking now, she is running!!  The most beautiful run I have ever seen.  Her personality is shining through, she is calmer and happier.  At church on Sunday she sat with me the majority of Sacrament coloring and sitting calmly.  A few times she folded her arms and whispered to me "I'm being reverent mommy".  People at church who have been praying and rooting for our little girl to recover were in tears as they saw her run through the halls and said they felt like they were witnessing a miracle.  Her Physical, and Occupational Therapists were both amazed by the improvements just since seeing her a week before.  She is having fun playing dress up again and running up and down hills.  She is picking up balls and throwing them without tumbling to the ground with too much effort.  She is able to just be a an active playful loving kid again.

I took this picture right after she woke up this morning.  She hasn't woken up this happy in like 9 months.
We hear time and time again that prayers aren't answered in our time, but in the Lord's time and I feel like He had been trying to tell us she would get better but our fears were getting in the way of truly knowing that she would be ok.  It took 9 months and our prayers are finally being answered.  She will be able to achieve and excel and live a happy life.  For those of you that are dealing with struggles and heartaches and health issues my heart goes out to you.  Things may not miraculously get better overnight, but eventually things will get better and you will see His hands were always there to lift you up and guide you.  Thank you for your interest and concern in our daughter, for your thoughts and prayers.  For being the earthly angelic hands to lift us and serve us when our world came tumbling down.  I just want to let you know that I know that Heavenly Father hears and answers our prayers.  He will answer yours too.

Monday, September 10, 2012

Hannah's Progress

We hoped and prayed that Hannah would miraculously get better over night.  But as you all know, sometimes our prayers aren't answered the way we want them to be.  It has been 8 long and challenging months since Hannah became very sick and was diagnosed with ACA.  Each week she is progressing and performing everyday tasks a little better.  To avoid despair, Jake and I learned to focus on how much she has improved since her time in the hospital.  To compare Hannah to the perfectly healthy little girl she was last year is heartbreaking, but when we think back to how sick and helpless she was in January and February, we realize just how far she has come. 

In January, Hannah didn't have the coordination to sit up, play, crawl, walk, speak, eat, or even control her eye movements.  Hannah girl is light years better than she was during those scary months.  For those of you who haven't seen or heard yet: Hannah is walking again!  Three months ago, on May 31st, Hannah took about 10 steps on her own.  She took off walking across the living room, stopped half way and exclaimed in the most jubilant voice "Hannah's walking!!!" and then preceded to take a few more steps.  It was such an amazing moment of triumph for all of us, 5 long months in the making.

Hannah in May when she still needed her walker and helmet to get around.
Not being able to walk was one of the most frustrating things for Hannah.  So, every night after we put Liam to bed, we would practice walking with Hannah in the living room.  Jake and I would sit on opposite sides of the living room and take turns supporting and encouraging her to walk from me to Jake and visa versa.  The first few weeks she would stumble and barely make it a step.  But eventually she would make it a few steps before we caught her as she tumbled to the ground.  And by the end of May she developed enough strength and courage to make it 10 incredible steps on her own.  By July she was walking 80% of the time and by August she hardly had to crawl at all.  She still runs into things sometimes and falls down quite a bit, especially when she is tired, but gradually her coordination is getting better.  She can stand up in the middle of the floor without any help and prefers to walk without the help of our hands anymore.

Hannah in September, loving every second of walking on her own again.
Hannah's independent drive to do things on her own has definitely helped her overcome this illness.  The other day I was sitting down watching her prepare a tea party and it took her 5 minutes to do something that would normally take 30 seconds.  She took her trembling arm and picked up the little pitcher off the top shelf, grabbed a cup in her other hand and held them both close to her chest as she poured some "tea" into her cup.  Then she struggled getting the pitcher back on the shelf but she kept adjusting it and trying to get her shaky arm to do what she wanted and didn't give up until it was sitting in the same spot she grabbed it from.  My eyes welled up because I learn so much from her.  I couldn't do what she has done.  The fact that she doesn't just want to do things on her own, but that she wants to do them well has benefited her infinitely with this illness.

Everyday we see more and more of the personality and joy that defined our little girl before we lost her for a time to Cerebellar Ataxia.  Two Sunday's ago our family was getting ready to go to church.  Hannah saw that everyone was getting dressed, so she announced "I'm gonna get dressed", and then went in her room and closed the door behind her.  A few minutes later we decided to check on her.  She had gone through her dresser, picked out a perfectly matched skirt and shirt, and started dressing herself.  For most 3 year old's that is nothing out of the ordinary, but for Hannah this was a huge milestone she couldn't do for 8 months.  She is back to some of her adorable habits of collecting her favorite toys and little treasures from around the house and putting them in a purse and carrying them with her everywhere she goes.  A little quirk that I didn't know I missed until I saw her do it again.

That smile.
Her talking is starting to improve almost daily.  The coordination to speak has been a slow process.  Back in January she could only say a few words and they were very labored and static. She is now talking in sentences again and constantly asking us questions.  Jake and I can understand everything she say's, but people who aren't around her a lot usually need us to translate.  Last night she made a huge step in communication when she was able to tell us about something we didn't see happen.  Here is what we saw: Liam and Hannah both screaming and Hannah grabbing Liam by the face from behind to pull him off a car she was playing on.  I told Hannah to apologize to Liam and give him a kiss.  She said she was sorry but then said, "He needs to say sorry to Hannah".  I asked her why he needed to say sorry and she showed me the bite mark on her hand and said "Baby bruh bit me hard! He needs to say sorry." The way she was able to explain herself and tell us exactly what happened was so impressive because she couldn't communicate well for months.

She has been sleeping in her own bed for a few months now.  Most nights she will wake up hysterical and I have to go in and calm her down but it doesn't take long to get her back asleep, which is a big improvement from months of sleepless nights.  Overall her health, sweet demeanor, and everything Hannah loved to do is slowly within her reach again.  Her patience with herself has been extraordinary.  She has adapted to her limits and slowly tries to exceed them.  We love you Hannah girl!  Your strength and courage throughout this whole ordeal are inspiring. 

Thursday, July 26, 2012

Liam is 18 months old!

I have so much blog catching up to do it is a bit overwhelming.  But I couldn't let today pass without doing a little post about Liam.  Today Liam is 18 months old!  He is such a boy.  He loves cars, trucks, dirt, sticks, and climbing.  One day I turned my head for a few seconds and turned back around to see a grinning little boy standing on top of the kitchen table.  A couple of months ago I discovered he could count to 10 when I said 1 and he finished counting to 10.  He is hilarious.  If we say the word scowl he will look at you and display the best scowl you ever did see.  He adores his big sister and learns so much from her.  He has not been the best sleeper.  Just a month ago he started sleeping through the night consistently.  He is a chatter box.  He has a lot of words (over 100) and combines them to form sentences.  He can repeat almost anything you ask him to and then adds them to his vocabulary instantly.  I have never actually written down all the words he can say, so for journalistic purposes here we go.  Feel free to skip over this part, I am probably the only person who does not find this list boring :-)

  1. Mama/Mami
  2. Dada/Dadi
  3. Hannah 
  4. Ball
  5. Car
  6. Race Car
  7. Truck
  8. Garbage Truck
  9. Hold you
  10. Help me
  11. Baby
  12. Grama Gi Gi
  13. Brampa
  14. Mimi
  15. Papa
  16. Mamer = Mater
  17. Book
  18. Wuv you
  19. Wuv you fifee (Love you infinity)
  20. Crap (I know, we are tremendous parents)
  21. Go
  22. Bye Bye
  23. Go bye bye
  24. Go bye bye car
  25. Here go (Here ya go)
  26. Airpane
  27. Go bye bye airpane
  28. Nope (I love that he says nope for no)
  29. Ochay
  30. Milk
  31. Drink
  32. Juice
  33. Nana (Banana)
  34. Apple 
  35. Cha Cho Juice (Chocolate Milk)
  36. Cup
  37. Cracker
  38. Cheese
  39. Cookie
  40. Wa wa (water)
  41. Raspberry
  42. Chair
  43. High Chair
  44. Fishy
  45. Horsy
  46. Cow
  47. Bird
  48. Duchy (ducky)
  49. Kack Kack (quack quack)
  50. Giraffe
  51. Elephant
  52. Hippo
  53. Monkey
  54. Oo aah aah (sound monkey makes)
  55. Moon
  56. Er is Hannah? (Where is Hannah?)
  57. Er she is Hannah (There she is Hannah)
  58. Ouchie
  59. Amen
  60. Hello
  61. Hi
  62. Soap
  63. Show Show (Shower)
  64. Show show da da soap
  65. Foot
  66. Ticka Ticka (tickle tickle)
  67. Jack
  68. Baby
  69. Trey
  70. Macme
  71. Aubrey
  72. Unka Day (Uncle Day)
  73. Naina (Alaina)
  74. Cupcake
  75. Coming
  76. Candy
  77. Ice cream
  78. Shoe
  79. Mi Mow (Mickey Mouse)
  80. Mi Mi Mow (Minnie Mouse)
  81. Chi Chow
  82. Baby Bruh (baby brother)
  83. Milk shik (Milk shake)
  84. Flowfer (flower)
  85. Tree
  86. Hat
  87. Biper Change (diaper change)
  88. Bike
  89. Ow side (outside)
  90. Pack Pack (back pack)
  91. Mote (remote)
  92. Jishous (Jesus) 
  93. Skews Shoo (Excuse you)
  94. Pees (Please)
  95. Uh Oh
  96. Down
  97. All done
  98. All gone
  99. Nose
  100. Ear
  101. Eye
  102. Too Bruh (tooth brush)
  103. Stuck 
  104. One more time
  105. One
  106. Two 
  107. Three
  108. Four
  109. Fif
  110. Six
  111. Sen
  112. Eight
  113. Nine
  114. Ten
  115. Sawsee (sorry)
  116. Open
  117. Open door

We love our little man so much!  He has added so much joy and fun to our family. I'm gonna miss my baby, but I sure love the little boy he is becoming.  Here are some pictures of our growing boy.
4th of July
Holding hands with daddy at the Boise Zoo
Driving a truck at the Boise Zoo
He loves swimming and has no fear when it comes to water
He loves bananas.  And Hannah's sunglasses.
We celebrated his 18 month birthday with a cupcake.  He was timid at first.
But then he dug right in.
He loves cupcakes.
Looking cute bud!