Days of darkness, Days of Light

My dear friends

How long has it been since we have written !

As you have seen from my past post - the months of December and January and most of February have been difficult with illness and a new diagnosis

Dark days of illness, finding joy where we can 

As January passes, R becomes thinner and thinner

Most foods make him vomit

DH and I became ninjas at positioning trash cans so he could throw up in them

Its a frightening time and we have completely stopped scolding him for anything -

In our brand new house - the white carpet already has vomit marks

(I discover that there is a big paint streak on the newly painted walls but it gives me joy -

I feel  as though an active child lives in this house)

We try to continue with some of the things that give him joy

Like playing Table tennis at the pro club

We go for a birthday party at Chucky Cheese - while its so noisy ( DH and I need a nap ) .

R enjoys it and its so well worth it to get a few smiles from him

We slow down a lot ( we are forced to ) as R is constantly exhausted

A new plan for schooling for R 

Since R's illness does not seem like its leaving anytime - and R misses school

Some days too week to go and some days - he feels like throwing up as soon as he gets to school and DH has to drive back to get him

Plus school barely seems to be pursuing any academic goals at all - we are in a school district that is supposed to be very good - we like his teacher very much but don't feel like school is meeting his needs at all


 So we decide to make our own version of home-school

•  Part- time school 
• Part time home therapy program - which will start to focus on academics 

We have a meeting meet with our team therapists - all his therapists come and his class teacher comes as well

Behold the delectable cupcakes that DH makes

We decide on this new gameplan

Finding out what's wrong 

We go to the hospital for scopes

How frighteningly thin he is

I went dwell on the difficulty of this time

Its just as bleak a time as it is for all parents of ill children

At the same time, its not as terrible as you  would have imagined when you were not in it.

You just go through it because its all you can do

You find what joy you can

DH and I get a lot of time together, I discover that the grilled cheese sandwiches at the Hospital cafeteria are quite good and R discovers that they have a lot of Einstein DVD's

The wireless at the hospital is really good and I am able to manage a lot of my work

 As you know from my previous post that that R has Crohn's

Healing 

R's medicine has to be taken in form of an IV .

(Another post later on getting smart with your child's hospital visit to follow soon, as we learned so much to increase R's comfort with the hospital. And when I searched for a "how to pack" what to expect" I found nothing  )

We go to the Swedish Hospital in Seattle and I cannot say enough about the staff there

Just amazing nurses

R watches Baby Beethoven ( this is his coping strategy for his time of stress )

We have to go get this medicine on a schedule ( for a long time ) and  we are becoming pros at it

R, I see even makes this his screensaver

We need to watch for for whether R develops resistance to this medicine ( Remicade) , or a reaction

But so far so good

And it works in double speed

Getting Better 

Within a day the vomiting , the holding his tummy and lying down on the floor , the complete lack of appetite is gone

We even go to IKEA - as his beloved Miss Tori is in town ( our speechie in Knoxville who has family here in the Pac NW )

R ignores her, as per his usual style when he meets someone after a long time.

But  I am quite amused to see that he has made a picture of her and him his screensaver on his smartphone

By week 2 we are going out to restaurants

Doing daring things in the club

R goes inside the ball.

While all the other kids are devising techniques how to stay in charge and in control - R does best as his technique is to not resist the movement of the ball but flow with it ( see him inside )

What a great technique for life as well

R's personality has changed as his body is healing

He is very very busy now and barely has he time for long snuggles

He has gained 10 pounds in a month and asks to eat all the time ( still asks for only junk food and eats healthy foods fear factor style .. but still )

This is Seattle and so its still cold and rainy in "Spring"

But R demands to go to the Park everyday that it does not rain

The park and the lake down the lane beckon to him

He uses the big slide

He runs these days all the time

He sits and stares at the lake

Even today - even though the temperature has dropped to the point that I need to wear gloves - he insist on going out  "to make his balloon fly"

 I run behind him watching a boy with a red balloon in his hand

I don't even dare to hope that his Crohns is in remission ( keep your fingers crossed for us please )

We set the balloon "free"

I watch it make its way through the branches of the tree

It catches on the branches

I hold my breath and hope it makes its way to the sky

The little red balloon does make its way to the sky, and  it feels like a good omen

Hope feels good

When I was little, I used to wish I could see into the future

I don't anymore

I don't know how many struggles lie ahead us and I am glad I don't

For life teaches me again and again  to take all the joy there is to have in each moment in the present

Thank you my friends if you have stayed for this long post.

I am so behind in staying in touch with you - please forgive me and I promise to visit soon