Friday, January 9, 2015

A stinky new normal

I was not going to say anything about this initially.  Only a few people are currently in the know.  Then I realized who am I kidding...I am a venter.  I need to talk things out and just get it out of my system or say it out loud.  This does not always thrill my family.

I remember coming home from school or work when I lived at home and I would rant and rave about whatever was bothering me for at least 15 minutes and then I was fine, over it and could go on about my day.  I still do this... although I turn to writing more than speaking.  So bear with me while I rant.

I remember the phone call from the first specialist when they said that they though D had Crohn's.... I had just gotten to the grocery store and was getting out of the car when the phone rang.  The doctor said, "it looks like the early stages of Crohn's disease."  The news crushed me and I slid to the ground where I just sat until a friend happened along and helped me up {Thanks Jessica!}  Then I had to get up and pretend like that phone call hadn't just happened because I had kids to pick up and an afternoon to get through before my husband would be home.  Being upset would have to wait.

Of course I cried later.... I cried because I knew all the horrible things this meant.  I knew because I watched Crohn's kill my mom bit by bit.  I have another family member with it & I have watched it re-arrange and scramble their life.  I knew the hard road that was ahead... and for an 8yr old to have to travel it just seemed beyond cruel.
But maybe,  just maybe this doctor was wrong.... so we found another doctor who within 15 minutes of talking to us and examining D said, yep Crohn's.  He wanted to do another colonoscopy to verify.
When discussing the results of the colonoscopy with us I cried again... there was no pretending that there was another possibility anymore.     To have to explain to Dylan why he was sick and what his future involved was so hard.  It is heartbreaking to take him to have his blood drawn constantly, to hold him down while they start his IV each month, to explain that yes he has to take all this medicine and while it makes him temporarily feel better he is not better yet... nor will he ever really be all the way better. Dealing with this disease is his life now.   Crohn's never goes away & you deal with it daily.

Fast forward 5 months.  I wake up one morning in extreme pain and drive myself to the ER.  I suspected a kidney stone or wonky appendix and my 4am web md search seemed to support this.
A cat scan, massive amounts of blood work, X-rays, colonoscopy and 6 days later I had a diagnosis as well.  Crohn's.

When they first told me in the hospital that it was a possibility I laughed out loud because the possibility of it seems so absurd to me.  It was my worst nightmare coming true again.
I said, "No I have an appendicitis and you are going to take that out and I will go home."  Then they laughed.

So once again life has changed greatly..... today I started IV infusion treatment.  Soon D and I will go together to get it done.   My sister said "Wow you are taking helicopter parenting to a whole new level" when I told her of my diagnosis.  That was still is.   We are on heavy duty meds.  I pray that this works for us.... that it gets us into remission with little to no scary side effects.

The new normal is hard for me to accept.  It seems like so much to take on and yet here we are and making the best of it.  I run the gambit of emotions.... angry, sad, resolved, determined and  more.
I realize that medicine has advanced a great deal since the days of my mothers diagnosis.... I know that no 2 cases of Crohn's are alike which is both a blessing and curse.  I know that we will get through this and be okay.  I know that there are people going through things that are far worse.
I also know that I would really really love to have rocky road ice cream again but I can't.  So thank you for listening to me vent, for all the prayers that have been said and help given to our family.  We are truly grateful for it all.

Wednesday, December 10, 2014

Down The Rabbit Hole We Went

Alright .... I don't intentionally go months and months without posting .... I have all kinds of plans each day and life tends to show me that it has other plans for me.  But here I am carving out a few minutes to update the blog and hoping that I can string together some coherent sentences since it has been so long since I wrote.

So last time I wrote we were living here: 
(How incredible is it that I lived in a place that a giant crown in the middle of town... it seems so appropriate as I am sure I am long lost royalty ... anyway)

Sadly we had to leave there unexpectedly.

One of the boys got really sick while we were across the pond and we spent over a year trying to find the answer all the while we were watching him deteriorate day by day.  It was extremely difficult... we looked at many options and in the end we decided it was best that we left there as a family rather than split up for a large amount of time.  We applied for a transfer and once we were notified that it was approved and where we were going we were gone in less than 30 days. Sometime called a turn and burn.  It was insanity to leave that quick.

While Yorkshire will always have a giant chunk of our hearts this helped:

We went from cold rainy, dreary weather to HOT.  One of our first stops was Old Navy to essentially buy new wardrobes for everyone because long sleeves and wellies were not going to cut it.  Thank goodness for the pool at the apartment or else we might not have survived June and July.

We searched and searched for a house.  Searched some more and were just about at our wits end and we stumbled into a great home and a great neighborhood.  Pictures to come later on that.  Still painting and hanging pictures and sadly unpacking a few remaining boxes.

After debating home schooling versus enrolling we decided to enroll the boys at a fantastic school.  I was incredibly nervous but all three boys have amazing teachers & they have settled in nicely.... although the older two are NOT fans of the uniform.  In fact one day the boys were able to catch a ride in this at school.   Not too shabby huh?

My time has been primarily spent at the hospital or clinic.   We were blessed to find a local pediatric GI specialist who quickly gave us a diagnosis and started a treatment plan.  Unfortunately after being basically untreated (despite our best efforts) for some time, D's illness had progressed to the point where the typical beginning meds were not going to cut it and we had to jump to the much more aggressive ones.  The catch being that there is a possible side effect of getting cancer.... so left untreated he would die, and treated there is a chance we opened the door to cancer.   
 After the first infusion there was almost a night and day difference.... come what may this is the best course of action for him now and it is making a big difference so we will continue on this path for the time being.

So long story short it has been a crazy 7 1/2 months.  As much chaos and heart ache we have endured we also have had so much laughter and joy in visiting family and friends.  We are settling into life here & it is a good place for us.  I was NOT happy about our destination but life is what you make it & I think we are making the best of it and it is pretty good :)  
More to come later y'all.

Thursday, March 20, 2014

Baffling Love

Many things in life baffle me.... generally what baffles me involves my children.

Here is a list of things that I thought my kids would have down by now.... I have been surprised & baffled by these things for awhile now.

1) Putting the lid back on the toothpaste
2) Rinsing out the sink
3) Flushing..... if nothing else how does your own gag reflex not prompt you?
4) The lack of aim in the loo.... it is astounding to me how many times and how much they miss...
5) Our inability to get out of the door in a quick manner
6) How the genuinely seem stumped as to what they need to do to get ready for school each and every day
7) How going to the grocery store involves at least one battle.... 

Now having ranting about all that here is what else just blows me away about my kids:

1) How amazing of a builder G is.... his mind just creates the coolest things.
2) How generous D is .... he is always so happy to help and to share
3) How funny B is... he can always make me laugh
4) How much just a smile from them can totally alter my life
5) How sweet and rowdy they can be at nearly the same time
6) How much they will defend and help one another
7) How they love to read and imagine and act things out .....

There are days where I am baffled for sure... and days of sighs and frustrations but I would not trade any of them or any of it for a second because what is always there is LOVE.

Wednesday, October 24, 2012

Hodge Podge

Hodge Podge Happenings

So life has been nuts and if I don't have time to at least get my Hodge Podge post up then I have to much going on in my life :)  So here is to simpler times and doing less and maybe if I say it enough times it will happen - judging by my entire family not likely.

1.  So, do you like beer? 

No.  Once upon a time long long ago I did but I no longer drink.

2.  What's your least favorite repetitive task? 

Cleaning bathrooms.  If you are new to reading my blog no worries I am sure I will rant about it soon - in my defense I have three boys to clean up after... I think that entitles me to a few rants every now and then.

3.  When was the last time you rode a bus?  Where was it headed? 

The last time I rode a bus was to swimming lessons with my son's class at school.

4.  What song from your childhood or from your own children's childhood could make a parent's nerves stand on end? 

I think there is one something about a song that never ends which is annoying but what really irritates me these days are my kids running around screaming Braundo commercials that they saw on you tube...

5.  The US Presidential election cycle is drawing to a close (can I get an AMEN??), and the third and final debate was held last night...what was the last thing you 'debated about'?

Hmmm....well I don't know that we 'debated it' but conversations were held about where to hold my son's upcoming birthday party.

6.  Can a person make too much money?  How much is too much?

Is there something like too much money?  It seems like we and the world always need more.  Seriously though yes, I think that a lot of celebrities and athletes make way to much and often have little to show for it.  I know lots of people donate to charity and all which is great but if you have ever watched an episode of Cribs on MTV you know that someone has too much $$ and time on his hands after you see a few of those houses.  How many gold plated sinks do you need?  How about a few normal high end sinks and buy groceries for some peeps?  Just sayin

7.  Pop-soda-coke-something else...what's it called where you live?

Joyce could probably answer this questions better than me as she speaks fluid England Speak :)  Where I grew up though we always said drink or you might say, "hey want to go get a coke?" but you might get chocolate milk or ice tea.

8.  Insert your own random thought here.

I am full of random thoughts today.  I am slightly overwhelmed at attempting to do this B Day party when I seriously just did a blow out Mario party for my other son about a week ago.  Two B Days in October is sometimes rough.
My niece is in the hospital delivering my new great niece tonight and I cannot wait to see pictures and really wish I could be there in person.
After two years of working on a medical problem of my son's with a variety of Dr.'s I feel like we are finally making some progress.  Prayers are being answered and I am beyond grateful and feel very blessed.
Lastly, it is super foggy again today and I would rather curl up on my couch and read and/or sleep all day but out into it I go.  This is not one of my favorite things about being here.