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 :)

Thursday, July 17, 2014

the breeze is blowin!

We are not in the midst of a storm...but i would say there is a good strong tropical breeze in our home lately.  Strong enough to make your hair a mess... give you wind burn and make walking into the current a struggle.... but not an actual storm in the grand scheme of things.

Our updates are many right now.

Simon's hitch in his giddy up has gotten ... well... hitchier.  That is my PT technical word that i created today. His leg length difference has continued to increase, so we are going to find out why.  Heading to ortho tomorrow for xrays and consultation.  I took the liberty to schedule him an orthotics appnt right afterward because i'm assuming he's going to need an "outside of the shoe" lift. His leg length difference is too much to use an "in the shoe" lift.  I'm looking forward to getting this taken care of for him...and also wondering what the cause of it might be.

Both the boys have been accepted to the Cincinnati bowel and bladder management clinic.  We will likely be heading there in the fall for about a week.  We will consult with the top urologists and GI docs in the country, and very likely will be discussing surgical options for shea at least.  More info to come... in a vague kind of way.  ( not really dinner time reading on that one!)

I asked for and was granted an endocrinology referral for shea.  Shea's growth plates are closing at an age appropriate rate, but his size and physical growth rate is way behind and way slow.  ( we use arm span measures on him, bc we know his legs will always be on the short side )  If these trends continue, and his growth plates close in the teen years, with his physical growth and size way behind... he will be very small for an adult...which can come with issues.  As it is, we are already seeing that one kidney hasn't grown in the last year.  It looks as though we will need to start growth hormone injections in the near future.  ( a daily treatment, and shea HATES needles... we have not mentioned this to him yet )  The tricky part is that he doesn't fall neatly in the main categories that insurance deems appropriate for approving funding.  I'm told that these treatments cost big bucks, so we will be spending time finding out how to convince insurance to approve this for him.

Danielle heads to camp on Sunday.  It's always a great time for her.  I'm so excited that she has this chance to have girlfriends!  My prayer for danielle this year is that she can find a good friend her age to be buddies's been a struggle for us sometimes.  Danielle and mommy are also scheduled to go to Vermont the last weekend of July.  It's the triennial 9p- / alfi's syndrome reunion.  We've never been to one and i'm really looking forward to it.  I have had so much support and friendship through the down syndrome network, GRSBA, Mops group etc for the other kiddos.  Danielle's diagnosis is so rare that there are only 2 other cases in the whole state... so we don't exactly get together for coffee!  She will also get a chance to contribute to research about her rare syndrome, as a genetics team will be there for the weekend with all of the families, and will interview parents and examine the kids in order to gather more information about her diagnosis.  It will be great for danielle and I.  I do wonder how a hotel full of "Danielles" is going to fly... but hey i'm up for an adventure.  Another prayer request would be that none of my current health issues would prevent me from taking her on this trip, I am a bit nervous about this.  Maybe I can teach her to drive between now and then... hmmm  Also on the danielle front, her stomach is much better. With the new gastroparesis meds, she is not 100%, but better for certain.  We ahve also greatly reduced her ADHD and mood stability meds and she is handling it well, even at school.  I'm very happy about that.

Dan has had a very very full few months of ministry at Manchester.  Many significant and unexpected events have unfolded in a short amount of time.  It's been a learning curve for hubby, and the family.  I'm so proud of him, and the people he's touched through this.  He is a bit stretched lately...and could use a good chunk of sleep filled nights and refreshment... xoxo

As for emily, everything is fairly normal with our gal.  She is going through some terrible 2's / almost 3 spurts for sure.  Overall though she is a happy, healthy, entertaining bundle of energy.  She loves her mom and dad terribly and I surely don't tire of that :)

As for me... it's been a tricky few months, and especially a tricky july in regards to my cardiac issues.  I'm hoping that this newest treatment strategy will help.  Hope is a good thing for sure!!.... although i sure am tired of being tired.  My 90 year old patients are at times kicking my butt at work....i try not to let on though :) Prayers for healing and successful treatment would be greatly appreciated.  To sum it up in one sentence: my blood pressure is consistently too low, and my hearts base rate is constantly fluctuating with irregular rhythms and pvc's thrown in as well.  AKA... my body always feels whooped with small amounts of physical exertion.

I could go on with the various updates, but those are the more significant tid bits.  We would love your prayers, and in the scheme of things know that it will all settle down a bit "someday".  At least that is what we tell ourselves right?!

Summer has brought fun, and friends, and we are so happy to be outside.  I love letting the kids play in the rain, and romp out back....  we are as always counting our blessings... while holding onto our hats.  Til next time...

Saturday, May 17, 2014

Springing up out of it all...

I may have a pile of laundry waiting for me...
but I have lots of beautiful little humans who create that laundry

I may have a lawn that is a bit too long,
But we have lots of space for those little humans to run and play...

We may have dealt with a stubborn drain in this rain that wouldn't stop,
But we have our home and roads and property intact....

I may struggle at times to find a place in my schedule to be with my gal pals...
But I have strong friends who live life to levels of high quality...

I may find it exhausting to wrangle my children on Sunday mornings from dawn until church ends,
But my children now live in a country where they are free to go to church without fear....

I may spend extremely too much time dealing with my families medical issues...
But I have skilled doctors and facilities at my fingertips to assist us.

I may not get many nights of good sleep...
But not a night goes by when someone doesn't call for mama and wrap their arms around my neck or sneak into my bed.

I may struggle with life choices on a daily, no hourly basis...
But God gave me a passion that I'm always wrestling with.

I may be more busy than i would like to be at work...
But i have a job that i am not afraid of losing.

I may not ever ever have a clean, tidy home...
But I am never at a loss for good company.

I may still have leaves and weeds in my flower beds...
But I can see the beauty of the flowers that spring up out of it all....

I may live in a messy chaotic state....
but God gives me eyes to see the beauty that grows forth out of it...

Wednesday, April 16, 2014

My husband for a decade!

April 17th,2014  Happy Tenth Anniversary Dan!

10 years... sometimes it doesn't seem possible.  Sometimes it seems like we just walked down the aisle yesterday.  Sometimes it seems like we've lived life together forever.

10 years... the adventures we've shared in this time frame, doesn't quite fit the average curve ... ehh?

10 years... I'm so glad I chose just the right mate to share this time with, and the future years to come as well.  That's a decade!  We've been married for a decade...that's pretty neat.

10 years... I think we may have exerted the energy of 20 years with our unique family choices, gotten the sleep of 3 years time, and had enough meetings, appointments, and illnesses for 30!

10 years... the passion, emotions, joys,and stories we've experienced while growing as a couple, and building this family should have taken much longer...we've packed each day full of punch for sure.  

I don't know many other men who would agree to the life we've chosen and for that i'm thankful.  It certainly isn't easy, but it's certainly worth it. 

I don't know many other men who team with their mate like you do, taking part in family life, child care, home duties, and being a father who is "present".  I know it's overwhelming for you many times, but I appreciate every bit of it.  Our "ships passing in the night" lifestyle has it's challenges, but it's many benefits as well.

I don't know many other men who are as crazy as you....!

I don't know many other men who are as convicted as you....

I don't know many other men who make people laugh as you do...

I love you very much, and feel honored to reach this milestone with you, my husband.  I'm thankful that we love each others "all"... the perfect and the imperfections.

My prayer for you in the years to come, is that you have peace, are filled with joy and contentment, and that our adventure continues.

Much love - always yours.... Elizabeth.

Tuesday, January 21, 2014

the last 3 days at "Spa de Strong"

please add to your prayers for danielle more prayers for me... i'm feeling discouraged... she was able to double her days oral fluid intake that was tolerated to 89 ml compared to yesterdays 40ml. 89 ml equals 3 ounces of liquid. The very minimum we need to achieve is 48 ounces per day to be off of an IV... let's pray the rate of improvement starts to increase... I was firm about getting a swallow consult from speech therapy, I started asking for it on friday, and the md finally agreed to it today. ( he was still saying it wasn't needed, I made firm eye contact, put my hands on my hips and stared him down. On his way out he said he would put in the order. The consult should happen tomorrow...please pray they can find some answers or help for us, and that it actually does happen tomorrow. Please pray that I stay positive and that I don't let fear enter my heart.

Today was a mixed bag for Danielle. We had some victories. Sips here and there (about 15 sips the whole day) from a water bottle on her own with bribery... ate a few bites of soft food a couple of times, and only one dose of IV pain med needed today. Did much more walking and was awake more because of less IV pain med. Unfortunately the sipping of water etc was nixed by 4:30, and she's either been asleep or crying since then...hence giving her that one dose of IV meds to get her comfortable again... progress is so slow but I must remember to give thanks that there was progress. My one saving grace HAD been that private room with the tub/shower for her and I. Notice the word *HAD*... oh well it was "nice" while it lasted. Also friday and saturday I had asked two different doctors...are you sure that's not thrush?? They said no. Today the speech therapist took one look and said "I think she has thrush"...therefore she is on meds for that now as well... lets hope it helps...

Finally a day of progress from beginning to end...and not just baby steps! No IV pain meds at all today, so far at 7 pm up to 19.5 ounces of fluid intake orally, awake 70% of the day, took some bites of soft food, even ate a meatball, did lots of walking, we are on the way up finally!  Still not drinking enough to take the IV away, but they may reduce the amount of hydration to make her have a feeling of being thirsty to further stimulate a desire to drink.  The mouth looks much much better after a day of thrush treatments, and because she's drinking so much more and tolerating mouth care better the mucous is 90% gone.  I only had to suction her twice today.  She has a great desire to come home, and started crying when talking on the phone to her brothers and sister.  It's good though...wanting to go home is a good way to get her to understand why she needs to drink... prayer and more prayer appreciated...keep it coming.  Also prayers for Dan's father Norm Kulp who is upstairs on the 7th floor being treated with a drain for his left lung, and awaiting exploratory surgery.  Prayers too for my wonderful husband who's birthday is today, as he spent it visiting sick loved ones and holding down fort on the fort on the homefronts...

Saturday, January 18, 2014

come on's rally day...

Alright girly.  Danielle you've got people waiting to play and have you up and at em...don't keep your public waiting!  Mommy is declaring and hoping that today will be rally day.  One of those days where we all say "holy moly girlfriend, I cant believe how much better you're doing"....are you on board with this goal for sunday??

A recap of yesterday:  You still slept most of your day away and are struggling to find your voice but a few nice successes that you claimed...
- your fever was short lived and conquered by a nice bath that you slept through!
- by 6 pm you initiated a walk around the nurses station and pushed your own iv pole.  I think you knew your body really needed this, because afterward you were able to cough up / loosen up "gobs" more of that thick superglue like mucous that is giving you so much trouble. ( yes gobs is a highly official medical term..)
-we are getting a better handle on your secretions in general...using humidfied air, saline nebs, sponging your mouth and using suction
-we were discouraged by no progress in regards to oral intake even with stronger pain medication until 7 pm.  Then a new med was tried that actually numbs the inside of your throat,  also zofran to help decrease adding that you started to take in some fluids.  I can see a desire to eat is returning, and you get frustrated when you see food you want but cant make your mouth and throat cooperate to take it in.  Be frustrated will make you work hard to get back to what you love...eating and drinking.
- although 40 ml of liquids orally is a very small amount in the scheme of things, we worked very very hard to gradually conquer that tonight.  Little by little you did it!  I'm proud of you...and know it wasn't easy for you... but we have to start somewhere.  I'm thankful that your swallow is starting to figure itself out again.
- while you again slept a vast majority of the day, I did see your eyes open more often as you took in bits of a movie here or there or clutched on to your new toy horse...and you're trying to get that voice of yours to work again!

It's a good start sweet pea... and tomorrow I have faith that we'll blow all of those improvements out of the water... so sleep tight and get ready to have a wonderful day tomorrow...that's an order from mommy... love you dearly.

Today's plan for Danielle

We saw the docs...

danielle smiles...

they are not going to order a swallow eval.  In their opinion the mechanical trouble she's having with swallowing is all caused by her pain causing gag reflexes etc to kick in.  They feel once the pain is resolved then she will head in the right direction.  She is still on IV's to prevent further dehydration.

ENT took her immediately off tordol ( her iv pain med which she has been on thurs, frid and saturday ) because it is a high risk drug for bleeding problems post tonsillectomy. hmmmm

We already know tylenol and motrin aren't cutting it bc we had been using these religiously since day one...therefore they are saying she needs to go stronger, and she is now on morphine...which i am nervous about.

They feel if we get the pain under control then she should be able to swallow properly again... so that is today's project.  they want me to magically get her eating and drinking :)  I'll give it my best shot!

so far we've tried various liquids ...those still come right back up
pudding... goes down but then vomited back up
applesauce... we've gotten one spoonful down every 20 min or so...

she is very sleepy still... hard to know if it's the constant sleep she's been in since wednesday, or if it's morphine related... but she is harder to rouse... so i'm sure the morphine is contributing.  I am happy that i've gotten a few smiles out of her and that a few times she's signed that she wants to eat... but then gets mad bc it hurts and won't go down.  At least a little bit of desire is returning...

soooo if anyone knows how to get a sedated sleeping child to eat and drink... throw the tips my way !! :)

Danielle will be getting her special visitor as Daddy will be able to visit very soon!!!...maybe he will be able to work his magic with her too and get her to take in a little more by mouth...

all testing and lab work from yesterday have come back clear / normal so it's good we aren't dealing with flu or uti etc.

thank you for the continued prayers....

Friday, January 17, 2014

Updating you on Danielle's status...

This is probably the best way for me to update you since cell reciption is hit or miss here...

This is the scoop on danielle so far.  She has steadily declined instead of improved since her tonsillectomy on monday.  By thursday we were struggling so much to hydrate her at home that her urination stopped, so we knew it was time to go to the ED. 

We spent the whole day getting IV hydration and IV tordol. Once she urinated, they dc'ed us.  I was concerned about her gagging and choking when ever she did try to drink.  Our hope was that with the hydration she would rally on friday.

Friday things became worse, not better, so back to the ED we went.  By now she's been asleep 90% of the time since wednesday.  She has been admitted.  Danielle is the kind of gal who would love visitors and it would pep her up, unfortunately the hospital is on FLU protocol and she is only allowed to have 2 visitors the whole duration of her stay.  ( not 2 at a time, or two per day...but just 2 designated people and no others)  I'm sad because I know she would be uplifted by her grandma's, grandpa's or aunties and uncles coming to love on her.  If you have smart phones or an easy way to send pictures or videos to her she would probably love that....

I have been voicing my concern since our first ED visit about her gagging and choking.  Everyone said it was because she was in pain.  I think she is in pain, but I get the sense there is something physically wrong or malfunctioning with her swallow mechanism right now.  Her vitals are still good, her sats are good, and no temp.  She is now starting to heave and gag, no vomit bc she's eaten so little just flem and mucous, but definitely worsening of the vomiting type symptoms after trying to take her meds or sips of a drink.

Once we saw the doctor upstairs I again expressed my concerns.  She really took some time with danielle and examined her mouth/throat very thoroughly,  depressing her tounge and getting her to open as wide as possible.  A large amount of very thick, glue like mucous was able to be removed from the back of her mouth.  Also a colace pill ( gel like coating) was jammed in the back of her throat.  It was probably the one from tonight, because it would have dissolved if it was from this morning.  She was able to remove that carefully as well.

Our plan now is that danielle has been made NPO, ice chips and IV hydration and nutrician until tomorrow. She  has ordered an ENT consult for tomorrow and was surprised this hadn't been done yet.  Also they may order a swallow study to determine what textures of food or drink are safe at this time.  We need to be careful not to cause an aspiration pnuemonia as she's had in the past.  All her meds will be done IV for now, with the exception of one med that she's on daily - we are not sure if it has an IV form and it has withdrawl effects if stopped suddenly, so we are looking into that.

-Chest xray = clear  
-CBC= pretty close to normal
-still awaiting results on the nasal swab to check for flu, rsv etc
-still awaiting results on the urinalyisis

I think that's it for now...thank you for the prayers... keep em coming... and I guess catching that fainter in the hall did pay off because we have a private room with a shower... hallelujah!!

Friday, January 3, 2014

Why was he given another mountain to climb?

Over the last 3 months I have started to come to the realization that Shea may have yet another mountain to climb.  I would think that this little guy already was given his fair share of challenges in life... but here we go again.

Shea is very intelligent, very funny, very creative, very verbal, very social.  He also struggles INCREDIBLY with reading, writing and mathmatics.

He's not "just behind because he got a late start in life".  He has connections, decoding, and visual input/output methods that aren't working properly.

I know because of his Spina Bifida, and specifically for Shea some decreased development of his corpus collosum near his occipital lobe he is especially prone to these kinds of challenges.  I know it is probably not something that he is going to "just grow out of".

BUT, I know I have high hopes for what his future may hold, and what he can do with the many strengths that he has.

I know I have a long long way to go in regards to learning how to best teach and help shea.  After 3 months I still am having trouble even finding a way to get him tested for dyslexia in the rochester area.  I know almost all schools have a very long way to go in regards to learning how to best teach children with dyslexia.  I know bills in NYS assembly and senate( that would require schools to have a staff person who is certified in dyslexia intervention and recognition)  started in 2012 still don't even have a vote scheduled on the calender to date.

I am also learning that having trouble learning to read and write has nothing to do with my son's intelligence. He is very smart, he just has a brain that takes information in and puts information out in a different way.

I hurt when I see how frustrated he becomes with school and homework, and how he doubts himself...

We have another mountain to climb...together... and we are just embarking on the foothills...

Heck a few months ago i hadn't even really known that this mountain was in front of us... but here we go... ready to climb.  We will get tired i'm sure... i just hope we don't get lost, and that we don't quit!

This is a long video... but really hits the nail on the head.... if you have time take a look....