Kite Runners

At play group on Tuesday the kids thought chasing a kite was the best game ever! It was so cute and also a great way to get them all tired out for nap time!
Here are the little Kite Runners, Adina is in the yellow hat.




And after a long morning of chasing kites, time for a hug from her pal Wyatt! They are so cute, they always greet by running towards each other and hugging.

Bummer

As I was holding Oliver last night we had a bummer moment. He had just fallen asleep in my arms and I noticed the chair was shaking. I thought it was an earthquake at first until I looked at Oliver and it was he who was shaking. I knew it, but we called the neurologist this a.m. and he was pretty sure it was a seizure. Oliver is very high risk for seizures, we knew this, but it still sucks. Oliver has been very irritable this week and not eating or sleeping well. Although after his seizure last night he slept all night. It takes a lot of energy out of his little body.
May 1st we will have another EEG, also Oliver's birthday. Sorry Buddy, horrible Birthday present. Hopefully these do not occur too often, not at all would be perfect, but now we are on the lookout. Until then we are enjoying the weather. Oliver now loves the stroller!! It is great!

Here is another poem I ran across today that I would love to share.

I AM THE CHILD
I am the child who cannot talk. You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well. I am aware of much
-- whether you are happy or sad or fearful, patient or impatient, full of
love and desire, or if you are just doing your duty by me. I marvel at
your frustration, knowing mine to be far greater, for I cannot express myself
or my needs as you do.
You cannot conceive my isolation, so complete it is at times. I do not
gift you with clever conversation, cute remarks to be laughed over and
repeated. I do not give you answers to your everyday questions, responses
over my well-being, sharing my needs, or comments about the world about me. I do
not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself; I do not give you understanding
as you know it.
What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder, seeking
answers to your many questions with no answers. I am the child who cannot talk.
I am the child who cannot walk. The world seems to pass me by. You see the
longing in my eyes to get out of this chair, to run and play like other
children. There is much you take for granted. I want the toys on the shelf,
I need to go to the bathroom, oh I've dropped my fork again. I am dependant
on you in these ways. My gift to you is to make you more aware of your
great fortune, your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them. I feel not
so much envy as desire, desire to stand upright, to put one foot in front of
the other, to be independent. I give you awareness. I am the child who cannot
walk. I am the child who is mentally impaired. I don't learn easily, if you
judge me by the world's measuring stick, what I do know is infinite joy in
simple things. I am not burdened as you are with the strifes and conflicts
of a more complicated life. My gift to you is to grant you the freedom to enjoy
things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown

Oliver's Day

Some very dear friends of our's, Joe and Amanda are organizing (along with the help of Luther Sem) a benefit on Oliver's behalf. We are SO greatful for Joe and Amanda. They have helped in so many ways already! For example, on many occasions we would come home from Oliver's numerous doctor appointments and there they would be with a full meal made for us so we would not have to worry about it, and let me tell ya, Amanda can cook! Besides having two kids she runs her own little catering business on the side.
Anway, many have been asking about it and here is the news. Oliver's benefit will be April 28th, 6:30, at St. Anthony Park Lutheran Church by Luther seminary. The tickets are 25 dollars each and this includes a meal (prepared by Amanda herself), and a concert performed by Peder Eide. I know that this is an extremely busy time of the year, but for those who are wondering, here it is =) It will be just a few days before Oliver's first birthday as well! I am really excited to just have fun and celebrate our perfect little guy.
He is doing very well with his cute little button. I will take a picture of it soon to show the before and after! He is happier with it, we think. There is no longer a long tube that hangs down to poke his little tummy.
Have a Happy Easter everyone!

Button

Oliver had his little surgery yesterday and it went great! Oliver took everything well, even not being able to eat all morning while we waited for surgery. The anesthesiologist commented on Oliver's ability to cry. We are so used to it that we forget to warn people. He is now rid of his long G-tube and has what they call a Mickey Button. It is just a little disc that sticks out and we can connect and disconnect the tube when we are done. It is fantastic!!!

Whew, That Was Hard!

Tonight at church I read a letter that I had written for Adina and Oliver about my faith and how they have helped me over the last few months. I practiced and practiced but sure enough I started reading it in front our congregation and totally lost it! It was the hardest thing I think I have ever done. Luckily, Kara, my sister came up and stood with me; I made it through with many sobs and a few snorts too! =)
We are so blessed to be members at our church. They are SO supportive and love Oliver so much. They are the best.
Our Doctor Strike has been wonderful--don't get me wrong, doctors are great, but not seeing doctors is better! Oliver has his mini-surgery on Tuesday to change his feeding tube, and then we will go back on vacation.
Therapy has been going really well! Oliver focused on a toy and followed it from side to side! We were all cheering for him. It does come and go, some days the eyes work and others not. We take the good days and throw out the bad.
Bedtime! Adina got the new book, "Llama, Llama, Mad at Mama." We finally get to read it.
Night

New

Oliver is starting to get big big big.. He is a little over 20 lbs now, which is normal for his age. Only problem is, he has outgrown his infant car seat, but not the need for it. He still does not have enough head and neck strength to be in a big boy car seat--so, what to do? One of our bigger car seats reclines but we are not sure if there is enough support, have to see what our OT says. Anyway... since we will soon be rid of the infant seat, Oliver is going to have to get used to sitting in the stroller for times we cannot carry him to the car with everything else in tow. Until now, Oliver has hated (HATED) the stroller, but we tried yesterday and he made it, and was happy for 5 minutes!! This was HUGE for Oliver!!!
Also new, Oliver and I have decided to go on "Doctor Strike." I am not going to go into explanation because I am tired and it has already been a long week. Of course we will only be on strike until, well, until we need a doctor I guess! Sometimes John and I really think that some doctors only pretend to know what they are talking about to maintain their gigantic egos, but really don't know the difference between their head and bum!
Yes... we are okay.... Just a little comic relief to get through the day..

Adina Darling

Three nights ago we put Adina down to bed and a few minutes later she knocked at her door (this is code for I don't want to go to bed) saying her head hurt. She said she hit it on her bed. Thinking not much of this we kissed her head and put her back to bed. The next night again came the knock and the same story of hitting her head. This time John felt he needed to do some investigation about this head hitting episode. He asked her what she hit her head on, "The toy box." John says, "Well, what were you doing before you hit your head on the toy box?" Adina gets a brave smile on her face, stands boldly on the bed with her two arms up in the air and bursts into song, "I CAN FLY, I CAN FLY, I CAN FLY!!!!"

John reminded her that before she flies, next time she needs to remember that she can only fly if she has some pixie dust! We have also put Peter Pan away for a little while.
Good Night