Sunday, October 30, 2011

I'm Begging for a Pie in the Face!

The Wright Family over at Act of Kindness are once again hosting the Pie Challenge for the orphans of Kyrgyzstan.  Please take some time, first, to watch last year's pie video below for a little preview of what it is all about.

Forty people have pledged to take a pie in the face this year, yours truly included, which translates into Christmas and a year's worth of vitamins for 2000 Kyrgyz orphans!  Kamila has benefited in the past and once gain, this year, she will spend her FOURTH Christmas in an orphanage, away from her family.  Folks, orphans don't get a day off; they don't get to 'forget', they don't get to turn off their loneliness; but for one day, the Wrights will bring them Christmas joy - they will be part of a family.  Better yet, for an entire year, they will receive life saving vitamins!

Please consider going over to the Wright's blog and making a donation in my name so that I can reach my goal of $500 and earn a pie.  I would be so grateful, but don't just do it for me.  Do it for Kamila, do it for the 2000 orphans left without families who will benefit, and do it for Esen because what 5-year-old doesn't dream of throwing a pie in their mommy's face?!

Saturday, October 29, 2011

Gifts for the Kids (and us)

We finally got the green light to send a care package to B & H.  A wonderful, sweet family who travelled this past week for court took it along and sent us this email about their experience in delivering it:

Hi Shannon,

Yesterday we had a chance to meet H and B, they are both so adorable!

They were in school when we arrived, so we waited about an hour for
them to get home and they were really ready to have fun when they got
back.  We found it so sweet how all the kids shared together without
any direction--older ones helping the younger ones open candy and
sharing toys.  All the kids really seem like a big family.  We didn't
know much about (the orphanage) before visiting, so the small number of
children there seems to give them all lots of attention from the

When H first came in from school she ran in with her friend S.
jabbering away and greeted us.  They both had to go change clothing
and came back dressed in pink.  H seems so happy, she loved
looking at your photos and naming who you all were (enat, etc).  As
she cuddled her baby doll she sang this sweet little song to it--very
precious.  She was very patient and looked through her whole gift with
such excitement!
B was basically a bundle of energy--he ran into the room and
started kicking the balls around.  Our driver helped call him over and
his eyes lit up when he saw the truck.  He was off playing with it
quickly--racing it across the floor and laughing.  He would sit still
for short bursts of time to view the other things, but really the
truck was just so exciting for him.  He did come over by H and
look at the family book together and they chattered away in Amharic
for a bit.

Then of course he rejoined the boys playing ball and zooming his truck!
Both very sweet kids, it was great to meet them!

I can't tell you what it means to us to know that they have a piece of our family with them, that they know they have a family waiting for them.  We are entering the second week since their court case was opened and could hear any day now when our court date will be.  I'm on pins and needles - can't wait to meet them!  Of course, I'm also extremely stressed about how in the world were going to raise the rest of the funds to actually be able to get down there, but I know it just has to work out.

Wednesday, October 26, 2011

Becoming a Boy

Something happened over the summer – my toddler became a boy.  It happened really fast – like super-fast – like make my head spin, eyes water, wonder what year it is fast.  Six months ago I had a toddler and today I have a little boy, with grown up thoughts and attitudes; a boy who goes off down the street to his friends’ house with a watch on so he returns home on time (and he always does); a boy who is showing amazing responsibility and comprehension; a boy who asks really grown up questions and expects honest answers; a boy who shows more compassion and understanding than many adults I’ve come across.  This boy can now ride a two wheeler, hit a baseball better than any of the older neighborhood kids and read and write better than any of the kids in his Kindergarten class.  Kevin has said several times that (Seinfeld fans will appreciate this) it was “The Summer of Esen.”  I am so proud of him and yet find myself wishing I could go back a little bit, slow things down because I know time is going to continue to race by.  He is so grown up in so many ways, yet still very much my baby.  I worry about him, as I guess I should – I am his mama after all.  I see him playing with his friends and he is so much smaller.  I see him struggle with his sensory issues and worry for the day when he begins to realize that he is different.  I know that all I can do is let him be who he is meant to be and let him grow, learn, make mistakes, guide him to the best of my ability and hope that it is enough.

Enjoy the cuteness that is my little man!

Monday, October 24, 2011

Port Drama - A New Series on Prime Time

Okay, it probably wouldn’t net many viewers, but I for one sure would like to know how it’s going to play out.  Remember back HERE and HERE and HERE and HERE and I could probably go on and on.  We opted not to leave Marissa port-less at the request of pretty much everyone employed by the hospital.  The venous access team has been unsuccessful in their attempts and only one of the pediatric anesthesiologists has been successful in obtaining peripheral access and that was under general anesthesia after four attempts.  That IV lasted less than a day.  If there were an emergency or if Marissa just needed labs drawn (which she does fairly frequently), we would be completely out of luck.  When her Hickman infiltrated back in May, the decision was made to give her a port-a-cath.  Because she has no alternative suitable sites, her surgeon decided to try and place the port catheter over a wire into the vessel that was occupied by her Hickman.  He was successful and we were beyond thrilled; especially when he marched in and proudly stated “she’ll have it for at least 3 years!”  After 18 months of managing a line that needed daily flushing and every three day dressing changes, she now had a completely hidden port that we didn’t have to do anything with.  We (and she) really enjoyed the remainder of the summer.  Baths!  Swimming! No more Line tugging!
Until….we went for the first flush.  The port didn’t work.  I didn’t freak out at first, but had a sneaking suspicion there wouldn’t be an easy solution.  We TPA’d the line and were able to get blood return and even draw some labs.  We went home and returned a month later.  The port didn’t work – AT ALL!  Marissa had surgery the following the week and they used her port for anesthesia – it infused okay although it still wouldn’t draw.  We went home, again.  We returned a month later.  Do you see a trend here?  The port didn’t work.  This time, I came prepared, bag packed to spend the day – ready to stand my ground and demand answers and wasn’t leaving without some.  I didn’t have to try real hard.  When they tried to infuse – it wouldn’t even do that.  In fact, she screamed and the skin around the port began to blow up like a little balloon.  I figured it was either disconnected or infiltrated once again although I couldn’t figure out how either could possibly happen on a brand new port.  She had a chest x-ray – looked great, a line study – which showed the vessel was obviously occluded.  Under normal circumstances, the port would be removed and a new port implanted.  Of course, where Marissa is concerned, there is never a normal circumstance!  It was decided to perform an MRV and first of all assess the actual condition of the vessel the current port catheter resides in as well as whether there were any other vessels that could possibly accommodate a new port.  Then, depending on what the MRV showed, either an angioplasty to try and save her port or surgery to implant a new one. 
The MRV was performed last week and we quickly learned that the thrombus in her vessel was not something treatable by angioplasty – the current port is unsalvageable.  As for new sites, the radiologists have weighed in, but the jury is still out.  Or rather, the general surgeons are still out….at a conference that is.  Stay tuned.

Sunday, October 23, 2011

Where I've Been

I promise to start updating more frequently (and with more pictures) very soon.  I suppose my first update should be this one, which is likely to be nothing more than a big 'ol pot full of excuses about why I've been too "busy" (everyone knows I HATE that word) to blog.  Basically it all boils down to the new job I took I couple of months ago.  Why the new job?  Why more hours?  Why a longer drive?  To answer, I have to back up a bit.  I've been with the same health care organization for just about five years and I've said it here before - I LOVE them!  I love the organization, I love the people I work with, the location of the particular clinic I work at is perfect and the benefits are awesome.  Last year I made the decision to give up my full-time position for a fill-in position and thus, gave up a phenomenal benefit package.  It was necessary at the time because of the extent and type of care that Marissa required.  The organization supported me completely and I have continued to work for them on an as needed basis, filling in and essentially setting my own hours.  We were lucky enough to be able to get a fairly decent health plan for Kevin, Esen and I paying out-of-pocket premiums, but they would not cover Marissa.  I take that back, they offered us a plan with a $10,000 annual deductible and no prescription drug coverage for her, which I politely declined.  Marissa is covered by Medical Assistance because her adoption was classified as a special needs adoption and because she is considered by the State as permanently disabled.  We are grateful for the MA, but it is much nicer to have her on group insurance coverage primary with the MA secondary. 

With the new children coming and even more medical issues to address; Marissa older, stronger, and more stable; I decided to return to work in a more permanent capacity.  I considered staying with my current employer and explored the possibility of a part-time position.  Unfortunately, staying with them would not afford us the luxury of choice when it came to health insurance coverage.  See, it is critical to me that each of our kids are covered at AFCH - aka our second home.  Marissa receives all of her care at AFCH and sees all UW doctors.  Esen has a UW pediatrician and sees some UW specialists.  Going with another health insurance plan would mean giving that up and I decided that there was no way I could do it. 

So, many months ago I began searching for the perfect job.  I wanted 20 hour weeks with inexpensive, full-coverage insurance that would allow the kids to stay at the UW.  I knew changing employers meant taking a pay cut, likely increasing my commute and starting over, but for the right insurance plan, I was willing.  Well, I found it and was so lucky to find it within one of the top health care organizations in the area.  The job itself is something totally different from what I've done before, challenging, and really enjoyable.  The people I work with are great and other than the commute, there is nothing I don't love about it. I also kept my fill-in position, so I really have the best of both worlds!

That brings us to now (and here come the excuses) - the last month, I have been training - full time.  I'm also keeping my part-time hours up at my other job.  I'm trying to manage the house, the kids' schedules, Marissa's therapy and doctor appointments, working on three adoptions from two different countries, and desperately trying to fundraise. Then, there was the stomach flu of the last week - I'll spare you any further details on that.  I also sit on the Patient Family Advisory Council for AFCH and I'm participating in several upcoming events - The Patient and Family Centered Care Conference  - where I'm sitting on a panel of 4 parents talking to over 400 participants (yes, me who can't stomach public speaking) and also this Wednesday's Child Health Advocacy Day at the Capitol.  I have an annual post placement report to write, AVON books to assemble and get out, and of course tons of stuff to do around the house.

Most days I feel like I don't know whether I'm coming or going.  I feel like I'm not being a great mom, wife, employee, volunteer, or anything else.  I kind of feel like I'm just getting by.  My 'to do' list is a million miles long and there is so much that needs to be done around the house before the kids come home.  I know it's going to get better.  November will bring a somewhat calmer schedule and I know it doesn't really matter if Kevin and the kids have to eat Mac n Cheese a few more times or if the papers lay on the counter another couple of days.  Knowing it doesn't make it any easier to tolerate, though.

So, there you have it.  That's where I've been - nowhere really.  Just working and living and getting by.  I promise to update and each of the kiddos soon. 

Monday, October 17, 2011

We Opened Court!!

FINALLY - the kids' case has been opened in the Ethiopian court.  It should've happened months ago and we should've already been docketed, but, in true Fenske form, we've hit every snafoo possible.  So, two days after H's birthday, the case has been opened.  We're still very guardedly hopeful for a court date before the end of the year and we could hear as soon as the next couple of weeks.  YAY for progress!

Friday, October 14, 2011

4 - again.

Happy Birthday to my oldest daughter  (and my husband - yes they share).  This is the fifth birthday we've had to celebrate in the past three years with the guest of honor missing.  I really hope it is the last.  I want nothing more than for all of my children to be home...where they belong.

Thursday, October 13, 2011

Want to Win a $500 Gift Card?

Beautiful Adeye over at No Greater Joy Mom has initiated a fundraiser to help bring home 40+ waiting orphans.  This woman has an amazing heart and an incredible spirit.  She dedicates her life to God and to serving those who need her help.  WE are one of the blessed families who could benefit from her current fundraiser.  All you have to do is visit this post for complete instructions.  You can contribute to our Chip in to the left sidebar or to From HIV to Home in our name in any amount over $10 and then leave a message on Adeye's blog that you did it.  You will automatically be entered for a chance to with a $500 Target Gift Card!!  Make the contribution and then share the link to Facebook or your blog and you'll be entered twice!  Good Luck!