Wednesday, October 29, 2014

I think I can !?

It's taken me a while to finally summarize our outcomes from the last few days of our trip to cincinnati children's.  In part it is because i haven't had many spare moments to sit down and write... and yes it's after 11 pm now.  Mostly though, it has taken me a while to process all the changes that are happening in our home, and I needed a little time and adjustment before i put this all on paper. I'm very proud of my boys for how they've handled the changes as well.  I must say i have two tough little cookies.  I don't know that i would handle things as well as they have if the roles were reversed.

The last Friday of clinic...  For all the families in our program at Cincinnati Friday was the day we were all waiting for.  By that time treatments had been established, tests completed, blood work done, etc it was time to meet with the doctors and get "the rest of the story"....

For some families that would be surgical planning, for some medical management, for others it would mean new unknown diagnosis, or just a pat on the back saying all is well, keep on keeping on.

The appointments with the colorectal team ran very very late for us... 2 hours late in fact.  This made us super duper late for our urology meetings which in hindsight turned out to be much more significant for us.

As I write, I know that this is more therapeutic and thought organizing for me, than any value it will bring to the readers....but sometimes my "pen" is my outlet, and that proves true tonight.

For Shea and Simon, I will say that the colorectal team was very helpful.  They helped me problem solve and tweak the management plans i already had in place, to make them more reliable and to keep the boys insides in better shape.  I'm coming home with a program for each boy that is a bit more time intensive, but overall gets the job done better and with much milder and natural ingredients...

Since shea's goal will eventually be to help me, and then become independent with this program, He will have the malone surgery done in the future.  There is not a rush for this to happen, and we will do it in Cincinnati when the urological surgery happens.  

By the time we made it to uro almost 3 hours late, when they were holding shop open for was the recipe for a perfect storm.  2 boys hanging in there pretty well, but still punchy and restless from a full day of hospital sitting, a very tired mommy who still had a 10 hour drive that night, teaching on some new medical procedures  then add in some very unexpected news, and wham.... watch out a crier!  Just the way i wanted to start my long journey home after 5 pm!  ( enter stage right, dunkin donuts pre drive large black iced coffee w carmel swirl to soothe my soul :)... my current addiction.

Shea's story is that he is most certainly a candidate for urological surgery, likely sometime in 2015.  It will be some combination of bladder augmentation, mitrofanoff ( stoma directly to bladder near the belly button ) and bladder neck tightening.  Before the complex team can know exactly how to proceed with shea, we have to start 3 to 4 months of medication therapy and catheterization every 4 hours.  This is to get the bladder as relaxed and spasm free as possible in order to safely go ahead with the operations.  None of this was a big surprise.... infact it's why we went to Cinci in the first place.  They have tons of experience operating on kids even younger than shea, and working hand in hand with the other teams so that everything is coordinated, hopefully in one shot.  I felt like we finally had this ball rolling, and it wasn't just a "someday, somehow" thought any longer.

Simon's story was much different.  It involved a great deal of surprise and unexpected changes which took me quite off guard, and made for an emotional roller coaster to be racing through my head as I tried to get education and training from the team.  It all happened so fast and furious that I really walked out of there with my head spinning.  It seems that at home there were certain tests that were not administered in the last 3 years, and also certain equipment that rochester lacks, so complete data wouldn't have been present even if testing had been up to date and current.  To summarize, simon's bladder was surprisingly even smaller than shea's, had higher pressures, and more spasming. The team presented his case, and told me our new job was to control this as best as possible in order to prevent kidney damage.  It was no longer a case of checking the kidneys once a year to make sure they looked healthy.  It is now a case of "manage this problem now to avoid the kidney damage that will occur if you don't".  So, in addition to Shea, Simon now also has to start medication daily and catheterization every 4 hours.

Neither are allowed to use the restroom in the traditional way to empty their bladders, as this is when pressures peak the most.  Wow... unteaching this to a child who we've worked so long and hard with to master these skills...sigh

The next steps are to return to cincinnati in 3 to 4 months for a short trip to retest urological pressures etc, to see how much progress we've made.  We are in frequent communication with the clinic via phone, email, uro journals etc to adjust our routine and medication dosages so that we can get the best possible results.  At this time we may start to do surgery planning for shea, and for simon it will be the first step in determining what our future plan of care will be... medical management, verses surgery.

Another surprise I received was about recovery time.  I had not been aware that with bladder augmentation you have to stay hospitalized for 2 to 3 weeks.  That in itself will be a tricky feet to plan and carry out.    Also about a month after the malone and mitrofanoff are done, we will return to have "hardware" removed.

So we are embarking on a busy busy year ahead.  I'm happy at what this will bring for shea's future with independence and confidence.  I'm so thankful we got this help we needed for simon, even though i mourn a further loss of "normalcy" for him.

Our current phase is one of figuring out how the heck i'm going to do all of this.  I have had to resort to daily check lists to keep me on track.  With medical items alone....injections, pills, liquids, meds for 3/4 kids, up to 4 times per day, GI routines 4 times a week, catheterizations every 4 hours, i'm not quite sure how we will sustain this rate of "nursing" in our home.  Getting organized and in a routine will be essential.   I'm praying that I can keep up with the non nursing parts of motherhood, although i struggled with that even before these additions were made :)!  I pray that we can avoid missing out on fun and activities for the kids because of the time that all of these things take.

I do feel overwhelmed, but i also feel honored.  Honored to care for my children, and honored to know their life is full of value and potential.  Honored to know their life now is so much different than it could have been... thankful to God for our blessings, and this crazy, overwhelming wonderful family.

Again I will say, if you've made it to the end of this incredibly long post, you deserve extra credit!  I will take any prayers that you can send our way.

To my husband, thank you for being a shoulder to cry on "a few" times since we've been home, and thank you for all you do around our home, and for our family.  Hang in there!!  We can do it.
Our october is winding down...  Pastor Appreciation Month, Down Syndrome, Spina Bifida and Dyslexia awareness month, and PT month...  as i have said...we are so aware it hurts! Ha Ha...

I will leave you with this link...  Orphan sunday is soon approaching.  When I think of where my children came from, and where they may be today.... it is Gods way of giving me strength to carry on. God would probably also think it would be a good idea for me to stop writing and go to bed!  So here it is... my heart... please watch....

to watch...just click...

Harden not your hearts. I am just an everyday Joe crying out for the orphans Christians are called to care FOR the orphan, not about them. Understand the dis...

Wednesday, October 15, 2014

eyes heavy...just a quick one ( cincinnati )

Just a quick one tonight as i'm super tired...

Monday through wednesday have been spent doing many tests to help the team collaborate for Fridays consultations about if any other treatment or surgical options will be advised.  It's good to know a team approach is being used.  Right now we aren't even assigned a specific urologist...because it's a team of urologists and colorectal md's who review each case together...(so that it's not just a team made of one doctor from each specialty...but a few docs from each specialty so the best / smartest plan can be made...)

we've had renal ultrasounds, vcug's, cystograms, urodynamics, mri's, daily colon xrays, and our continued morning treatments...etc etc

so a long long week, but we are adding fun in when ever possible :) I'm anxious for friday outcomes, dreading the long drive home, thankful for the help and support to make this happen, and looking forward to being home soon...

Saturday, October 11, 2014

more cincinnati

for the moms following this trip...

friday we had a super duper long day at children's.  A couple of lectures for my learning / training purposes, more imaging, then Md appnts with the colorectal team, and a trip to the pharmacy for supplies.

I did learn new and helpful things today.  First, i've been using an ingredient in shea's "recipe" for a year and a half that can long term cause kidney problems.... I have been getting scripts for I assumed the prescriber at home would know the risk... but anyway we've stopped that all together and have some new "ingredients" to work with.  I was afraid that these changes wouldn't work as well because volumes and potency of ingredients were decreased, but with some new techniques and administration tools, as well as timeframe adjustments.... so far so good.   We actually had more success than i was getting previously.

I've also learned, both boys are retaining way way more "abdominal contents" than I thought they were.  I had thought our existing routines were pretty adequate at keeping their insides protected the way i needed to,.. but not the case.  I feel some defeat that I wasn't caring for things properly.... but i feel relief that we now have the help we need and are on the track to correction.

An interesting side note... one of the boys has some quite interesting internal GI anatomy... let's just say an additional loop de loo that is not usually there... looks just like the loop on the viper at darien lake :).  One of the benefits was that the docs were able to determine if this was a clockwise or counter clockwise loop to make sure treatments and procedures needed in the future are done properly.  Also one of the boys has a "narrowing in an area that shouldn't be narrow" at 2 different locations that could be causing some of the troubles.  Again this is an issue that i have brought up to other specialized doctors in the past with no guidance, this will be examined further this week, and addressed.

The weekend is used to start the new treatments that they prescribe for each child on your own, and the hope is that the scans on monday will look clean and ideal.  If not they use the journals you have kept to then be able to modify the prescribed treatments.  We had good success today.  Also I did not think i was going to change the kind of kit we use, but after trialing this new style once, I immediately see that it works better for both boys.

Since today was pretty successful for us, we felt "safe" by noon time to head out of the hotel.  We took "precautionary measures", but never needed to implement them! :)  Shea and Simon got to hit the Cincinnati children's museum and the natural science museum.... free tickets compliments of the hospital.

During Friday's lecture, I entered the day very matter of fact, like a student ready to take notes and prepare for a lab and exam!  I was very surprised about the emotions that flooded me as Dr Pena ( the founder of this program and world famous surgeon for anorectal defect repairs ) spoke at times not like a doctor, but like a sympathetic soul.  Having someone who obviously cares about this issue that affects life so profoundly, and knowing everyone in the room was dealing with similar a way that most can't identify with.  Again... feeling like we found more of "our people".... took me off gaurd.

I feel like we have just started to peel back the layers as many many appnts, tests, and procedures are occurring in the next week while we are here.  Prayers are appreciated on monday as simon will be sedated for a pelvic and lumbar MRI.  The team here has found that many people who had imperforate anus repair in China in the same decade that simon did have a post operative defect that can contribute to continence problems, and at times tumors.  The MRI is needed for general treatment and planning, but also to rule out this problem for simon.

Those are the main points since the last update... if you're still reading I hope it's helpful if you're considering a trip out for your own child... and thanks for keeping us here and dan and the girls at home in your prayers....

Thursday, October 9, 2014


This entry is probably only of interest for a select handful of you.  Some have wanted to know more about this program.  So if you decide not to read on, no problem!  This may mostly be for the special needs mammas :)   ( both simon and shea are enrolled in the 10 day colorectal bowel management clinic, as well as coordination with urology testing and consultation)  The goal is that whatever GI and uro surgery that may need to be done in the future can be done with a team approach so that things are combined when able, and done in the appropriate order for best outcomes.

We made it to Cincinnati, well really Kentucky on tuesday night after a very very long drive.  It was a great help to have grandma kulp along and the boys did surprisingly well.

Since we would need to be at the Children's Hospital bright and early... I had to do late night bowel regimines for both of them to be ready for our first day of tests... along with the normal night time meds, routine and shea's injection... and getting settled into our it was a late night for the boys.

Day one was largely spent getting the baseline imaging of the lower GI system, via a contrast enema. The boys did really was a long day for them.   Many images were taken of how the dye moved through their system, and it was a way to look at anatomy size and shape as well.  The rest of day one and portions of day 2 were spent...."recovering" from this test.  We did enjoy a nice evening trip to the river front... with a few "recovery" gliches... but nothing mom couldn't handle right?

Day was actually our only weekday without medical appointments.  We took advantage of this to hit the Cincinnati Zoo, and to get in some swimming ( by evening that was finally safe). Also we are plugging away at Shea's homework.  Now the boys are in bed, as we prepare for another early and full day at the hospital tomorrow.

We will keep you posted.  The other mentionable thing is that this country bumpkin is not used to driving in a big city like this.  The roads and traffic here make rochester driving feel like a breeze!  So far so good...prayers for my city driving would be appreciated.  That's one thing I really didn't think too much about ahead of time.

Will post again in a few days for those of you who are following for possible future visits to this program.

Saturday, October 4, 2014

The Go To

Picture kermit the frog, miss piggie, fozzie the bear, gonzo, some chickens, scooter and animal in choreographed dance...

A catchy tune erupts to the words....  "iiiiii've got everything that I neeeeed, right in front of me...."!

No i haven't dressed up my family and asked them to audition for community theatre... (although that's not a bad idea).  

It's just that this movie is now Danielle's "go to".  You see Danielle has always had one movie that is her go to.  That means this is the movie she enjoys.  It is the movie that helps her unwind, this movie helps her during transitions, it gives her joy when she's already happy and it gives her comfort when she's struggling.  This movie changes every once in a while.  For a long time it was veggie tales.  Then Annie claimed this spot for a year or so.  Right now it's this particular Muppets Movie.  Now understand... if allowed Danielle would watch her "go to" 4 or 5 times each day.  We compromise at about once.  I will admit, I let her pop it in here and there through out the day as a coping tool.  Heck 3 1/2 minutes of the muppets to avoid a melt down, or a moody child... yes i will submit!  It's great for bribery too... exercise for 5 minutes then you can watch... eat your vegetables then you can watch... take a bath then you can watch ...    Everyone needs a "go to" right?

I have to say I've been blessed that when Danielle gets rigid in her demand for a repetitive movie choice, the girl has good taste.  It's almost always a musical, and it's almost always a movie that i secretly really like too.  Danielle will sing... no she will bellow along to the songs regularly, and she has many parts of the scripts memorized.  In her daniellese language she narrates right along with the script, praises the good guys, scolds the bad guys and cheers at victory.  It really is cute to see. 

Her movies are filled with catchy fun songs, and i do find my self humming many of them often throughout the day even when there is not a child in sight.

"I've got everything that I need, right in front of me"  Life's a happy song.... 
 click here and take a listen... you will smile

I'll be honest.  I sat down to write this blog and had no idea what was going to be scribed.  I didn't want to give "just another update" on the millions of overwhelming things that are happening in our family right now.  How in the world did I end up here?  I'll tell you.... i am on a restful retreat overnight with Dan.  My dear hubby has picked out the perfect norman rockwell town for us and a beautiful room to stay in.  There's not a sound to be heard, no tv, no children, and I had a good nights sleep.... and what was I humming when i woke up???  Muppets songs!  Good grief!  But listen to those words... they are great.  They are perfect for the upcoming Thanksgiving season.

God is telling me two things this morning... or maybe 3 or 4 even.  This may just be for me right now... or maybe a friend or two of mine can take comfort in this today as well.

 First:  everyone needs a "go to".  And i don't mean a person, or a food, or a guilty pleasure to unwind or lean on.  We need a "go to" that is inpirational, positive, refreshing, strength giving.  We need this "go to" on a daily basis.  We need this "go to" many times each day.  I have one... It's God, it's His Word.  Do you have a "go to"?  I wish I would use my Go To more consistantly.... that i was more faithful at it.  I know I will always have times of weakness or being overwhelmed.  Times of comfort seeking or needing a boost.  I am human, that will never go away.  I have peace that just as those struggles of mine will never go away...neither will my Go To....

Second:  I will be very honest with anyone who has stuck it out and is still reading my ramblings... I have had a month or more of feeling a more than normal amount of anxiety...  having feelings of being overwhelmed.  First of all I recognize they are just that... feelings.  Our life circumstances right now are really no different than any other time in our life.  In fact we've had much more trying times in the past when i've felt more in control and strong.  I'm not sure why lately i've been fumbling around with these overwhelmed feelings... maybe it was just the medically hard summer I had, or the lunar cycle, or the tide patterns. hormones?  heck who knows... I know it will pass, and I know I have my "Go To".  AND... just listen to those lyrics.... I have everything that I need, right in front of me...!  The things I am fearful or anxious about are a rich persons problems.   Going crazy because my house is a wreck?  Be thankful I have a home and stuff in it.  Annoyed because the laundry mountain can never be conquered?  Be thankful that my children have clothes on their back!  Afraid of illnesses that may target my children?  Take assurance that we live near spectacular medical care.  Fretting over a son's ability to read and write?  Take a minute and remember where this little man might have been right now.  I could go on for hours like this... are you getting the picture?.... I've got everything that i need, right in front of me....

Third:  The song goes on to say... Life's a happy song with someone at your side to sing along!  I certainly have that.  Much of the busyness and stress comes from my 4 little wonders... but i can't imagine life without them.  Many of my fears and anxieties come from wanting what is best for them and trying to keep them protected.  I certainly have a family at my side... and they sure do sing along a lot!  We have an intense month ahead of us, and i welcome the singing...( if you haven't listened to the song yet... go up and click that link... i promise it will bring you cheer )

Feel free to scroll down and get a glimpse of our happy song of the last few months.  Yes it has notes that are off key, and instruments that need tuning...and sometimes the director looses her cool... but we sing on none the less :)