Sunday, March 17, 2013

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


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


Yuji said...

K, through all of your struggles, you continually set a shining example for all of us on perseverance, and taking joy in all the little moments of life.

R is so endearing in the photos, as I'm sure he is in real life. I love the screensaver on his smartphone.

I think home schooling is a good idea... I'll be reading to see how that goes.

Thanks for letting us into your life of the past few months. Here's hoping R continues to do better.

Laurel said...

I am so sorry it's been such a difficult time but I am so glad that R has been diagnosed, his medicine seems to be working, and he is gaining weight and so much perkier. I hope his home-schooling is successful and that all continues to go well.

Sophie's Trains said...

This post brought tears to my eyes. I know the pain of watching your child be violently ill and lose weight in front of your eyes (my daughter doesn't have crohn's but had a prolonged gastrointestinal upset for weeks until we removed gluten from her diet). My heart goes out to you. You have wonderful strength and courage. Keeping fingers crossed for an infinite remission.

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Kim said...

10 pounds is wonderful! I hope R continues to feel better and better. I am glad you found a schooling solution that works for R. Best of luck.

Þorgerður said...

keeping my fingers crossed...wishing you all a good happy spring and summertime. Hoping health and wellbeing returns and loving those beautiful pictures. A big cyperhug to you all.

BabyWeightMyFatAss said...

Oh lot's of fingers crossed that the medicine is the key here.

I hope the new situation with school/therapy works wonders for him.

I agreed with everyone who posted above but I seem to lack the words to make you feel better, but just know there are others out there who support you.

Looking for Blue Sky said...

You're all going through so much, and scarcely believable that google could not help you with the preparations for hospital. I really hope that now R is eating again that life with get better and less anxious. Thinking of you xx

ZisforZen said...

What a journey you are on, my goodness. My thoughts are with you and I too hope that the upswing will continue for your little man. "Take all the joy there is to have in each moment in the present" - so true. Take care.

krya said...

i am praying. and sending my biggest love and hope and visions for wellness and healing and joy. always more joy. xxxx

Bonsky said...

R looks so sweet in your pictures - well on the road to recovery! I just had a conversation this weekend with E about being present in the moment you are in -- enjoying the blue cloudless sky, the spring birds, the smell of a warm rain, or consoling my M because her cast is going to stay on for 6 weeks not 3 -- to feel joy and a sense of well being in whatever the situation is. We cannot control what swirls around and through us but we can have control on how we respond. I choose light over darkness and sweet over bitter. Perhaps that is why I have always felt you and I are sisters of different mothers. I wish I was heading your way sometime soon to give you a big hug and have the pleasure of seeing your adorable R again. Cyber hugs and kisses instead with have to do.

Anonymous said...

I am so happy to hear that R seems to be on the mend. I hope this continues. Love to all of you. <3

Kris said...

I hope R continues to heal. As he heals,please remember to take care of yourself. Hugs to your beautiful family!

Bright Side of Life said...

Oh, K. I am so sorry that you all have been through such a tough time. Poor boy, I do hope that he is now back to being his happy bouncy self and that you all are enjoying life again. Huge hugs to you. xx

Tanya Savko said...

So sorry about how difficult it's been - for all of you. I'm relieved to hear that R is doing better, and I will continue to keep your family in my thoughts. Sending love!

jazzygal said...

Thanks for keeping us informed of how your boy is doing. Your post made my sile towards the end as I could see the progress he's making! Wonderful news and I will keep all fingers and toes crossed for you.

xx Jazzy

Vuhelp said...

Wow.... Very Nice Pics....

Li said...

I'm so glad R is doing better. His sweetness shines through in these photos. I'm sorry you are on a difficult road right now but you are facing it as you always do, with grace and hope. Hugs going out to you all.

Anonymous said...

you are a smart fighter. I am proud of you and r and dh

Jenny Saul-Avila said...

It's been ages that I've been to your page - how is that?
I'm so glad I read the posts with him doing better before I saw this one, so I could feel that there would be a positive end - so sad to see him so thin & know how worried you must be.
Glad that at least for now, things are looking up.

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