More music....

LOVE the line in this one that says "Whatever may pass and whatever lies before me let me be singing when the evening comes...... Bless the Lord O my soul"

And we're off... we have some of those long awaited dates!

CHOP called today with Katie's procedure date.  We will be traveling down on June 4th for pre-admission testing and to meet with a nurse co-ordinator.  At that time we will get all the "rules" for Kate as to what she can and can't have before the procedure.  Kate will also have to go off of her medication the day after Memorial Day so that she is able to be put into arrhythmia during the procedure - so she is going to have to be pretty vigilant for those 2 weeks.  She will be having her procedure on the 12th of June.  The procedure will take between 2 and 6 hours, with a 5 hour recovery time.  It is outpatient (at this point), so we should be home by that night. 

On June 18th, we travel out to Lancaster for Chris to meet with his surgeon.  We should (in theory) leave that appointment with his surgery date.  One specific prayer request on Chris is the insurance issues that have resurfaced.  The jaw repair is medical, and the insurance company is saying it is dental.  The surgeon's office takes our dental, but they are telling us it is medical.  I explained the situation to them - that I had been on the phone several times with AETNA who is insisting this is dental.  The representative from the surgeon's office is taking it from here - so I would covet your prayers that this would be resolved before we head out there on the 18th.  We know who we have believed in - and that He is faithful, and that He is in this.  Pray for us (me especially) that I would remember that as we begin this process!  Thank you so much for holding us up in prayer!!       

    

More Music...

A dear brother just mentioned this album to us today.  What an amazing album that constantly points to the face of Christ!!!  Here is one of my favorite songs from Matt Redman's 10,000 Reasons.......

He's Always Been Faithful

Great is Thy Faithfulness!

Well - I'm musing again....  : ) 

           We have been in a holding pattern for a bit now - still waiting for dates for assorted things, and trying to forget about them (except when we need to).  Working through some mindset challenges that I have at times.  Doing a lot of looking downward (navel gazing, I think they call it : )  ).  Just all in all blah.  Kind of saw this coming - it is my "way".  I tend to start to be overwhelmed after everything is over.  I just had to realize that that is what I was doing I guess.  And it happened in an unexpected way....

         

         It's been raining around here as of late.  Mike and I just finished putting in the first of our plants in the veggie garden (3 tomatoes, and I don't even want to think about how many pumpkin and melon plants!!) when the first drops started on Monday.  Deck was all down, wood neatly piled, plants in.  Check......

        House becomes unbelievably muggy.  First sign something is wrong - asthma starts to act up.  It's the humidity coupled with the fact that my stress levels have finally hit a high (along with some other levels....).  We button down the house and make sure the dehumidifier is working as efficiently as possible.  Albuterol administered.  Crisis averted.  

      Next day rain continues.  Humidity levels are up, but the temperature has dropped.  No air-conditioners have been installed yet (and that is usually done my now since with 2 asthmatics and high pollen counts, that's usually our only source of outside air or coolness..).  Interestingly enough, I have had the windows opened a lot this spring - and up until now neither Michael Ben nor I have had any problems with our breathing.  Knowing I am already compromised, I make the decision to open the windows to let the cooler air in.  The air isn't the only thing that comes in through that open window....

             This is my lilac bush.  Yes - MY Lilac bush.  We actually have two of them - one in the back which is bloomed and done, and one in the front which blooms later.  Although they were both gifts to me from my husband, this one is particularly special.  It was planted by me, on purpose, under that front window, 13 years ago.  The thought was that in the spring I could open the front window and smell lilac - one of my favorite smells.  This bush is a miniature, and will only get to be about 6 feet.  Seemed perfect.  What I didn't know was that the idea hadn't been thought out completely.  Our house SHADES that area (hence the late blooming), and my bush has seen some very slow growth as a result.  About 2 years ago, it "broke" the shade of the house, and the growth since has been extraordinary!  And the blooms went absolutely crazy this year.  I've never been able to enjoy them because of our health "issues", but again - this year is different for some reason.  And add to that the rain which "washes" the pollen out of the air.  Well......  heavenly.  And more than that.  One of my first thoughts was "I've been waiting 13 years for this."  Truly.  13 years.  Funniest thing is that I did absolutely nothing but wait.  Nothing.  Planted it, checked in on occasion (like that time the contractor putting on our siding almost trampled it to death...  : P ), and did nothing else.  Most of the time it wasn't even a thought.  It was just there - part of my life.  But growing, changing and becoming a dream.  Fulfilled.  At just the right time.  When I really needed to look outside.  It was there.  And it changed my gaze.  Made me giddy.  Reminded me of a God who is always there and perfectly faithful.  Who reveals Himself at just the right time and, well, He makes me giddy too......   Here's another reason.....

See that flower that doesn't match the others?  The tight purple bud?  My next surprise.  I LOVE Peonies!!  I planted three bushes near the lilac.  They were beautiful for about three years.  Then something happened.  They caught some kind of mold.  they would come up looking OK, then they would turn white with powdery mold.  The flowers were OK I guess, but the leaves were always damaged.  I eventually had to accept the fact that they were not salvageable.  I had to pull them out.  Another dream - another favorite.  Unfulfilled.  Destroyed.  It broke my heart to tear out those plants.  I had planted them, tended them, and tried to save them.  And they didn't come out easy either.  They had been there awhile.  Put down deep roots.  And it wasn't going to be a clean break.  We have to rip them up in pieces.   Truth be told - Mike did.  I cried.  The other day when we got home,  I noticed "one of these things is not like the others"....  Wait a minute.  Not possible!  We ripped them out.  They were damaged.  They were also LIGHT pink......

That is definitely a Peony plant.  It sheltered under the lilac.  It is healthy.  I cannot wait to see it "in all it's glory".  Dream returned.  Small in the starting.  But leads to a hope and excitement to see it in fruition.  Not from my hand.  From my Father's hand.  Just for me to enjoy......     

OK - more flower pictures.... what is this one?  These two are survivors.  Transplants.  "Dreams" from someone else's garden.  Plants a friend had tended in their garden and the plants had spread so thoroughly that they had to "share their dream" with others.  They gave us some.  They were not in good shape after spending 45 minutes in a car on a hot day. I dropped them in my garden and hoped for the best.  There were three different types of plants.  This one is the only one I have seen so far this year.  But they are rooting in our garden.  We have something - a part of our friend's garden growing in ours.  A shared vision and dream.  One of my other "loves" - κοινωνία (koinonia).  

All of these thought applied to a lot of what was going on in my head. And the thing that came through all the details and webs that wove their way around my heart - was that all of this - from the simple - like gardening - to the great - like the details of my life (surgeries, employment, housing, location, involvement, etc.) have another loving hand that is working toward my good and His glory.  My good and HIS GLORY!!  Even when it is "just a part of my life" that becomes something instantly beautiful. Even when it is something I have had to loose.  And regain.  Even if it is something given that takes root.  He is in it.  All of it.  GREAT is HIS FAITHFULNESS!!

Our assorted upcoming surgeries - no dates yet......

 Well - it's been a quiet couple of days.  That's GOOD!  I did get a courtesy call from CHOP.  The person down there said that they wouldn't be able to give us a date until sometime next week, but that the doctor was looking at June.  In the meantime, Katie is on her medication, has felt fine, and is slowly resuming her normal activity.

We had a surprise delivery yesterday for this "fruit bat"......

She suffered through the whole thing - even shared a piece or two.  And the twins made mini salads out of the lettuce.  They generally don't ask to eat salad, so I am thinking I may need to invest in some florist foam and skewers.....  : ) 

Today we had our annual cleft clinic for Christopher.  This was a pretty important appointment (for me anyway!!).  Chris has been on quite a road himself since he was born.  I have some pictures to kind of explain where we have come from and where we are going.....

This picture was taken in the NICU when Chris was born.  He was born with a unilateral cleft lip wide (UCL), and a bi-lateral cleft palate (BCP) - which began as a unilateral, then branched into a bilateral half way back through the palate. So - in "cleft talk" terms, he was UCL/BCP.  The "wide" distinction is added because, as you can tell from this picture, his lip was cleft to the point where his left nostril was functioning as his upper lip.  Believe it or not, that "bulby looking" thing next to that is his upper lip.

Because Chris was wide, he had to have his lip repair in two surgeries.  The first, called a lip adhesion, was performed at 6 weeks, and was really meant to stretch out the tissue and skin, and begin to put pressure on the gums to set them into position.  We had an awesome surgeon that the Lord lead us to in NICU - has was just back from Children's Hospital in LA, and had just finished a residency with one of the top surgeons for cleft repair in the country.  Here is Chris after his first adhesion....  And ALWAYS smiling!!

About 4 to 6 weeks later, Chris had to have his final lip repair.  He had his at around 12 weeks.  Here you can see the surgeons markings on his nose and you can also see the "cinching" they did to his nose to make his nostrils even.  They also did a wonderful job on the "cupids bow" (the little "valley" we take for granted under the middle of our noses) - a lot of kids with clefts do not have one because of the way surgeries used to be done.  He was stitched and derma-bonded....

Still derma-bond - you can see it lifting off now - and the stitches have dissloved...

After the derma-bond finally fell off......

Again - here's Chris!!  Loving life and ALWAYS smiling!!!!!!

Next up was his palate surgery at ten months.  Up until this point, the palate remained open.  That meant Chris could not use a bottle - he had no ability to suck.  The doctors have 3 tries to seal the palate.  If a fistula (opening - even pin sized!) opens up after the third attempt, generally there is too much scar tissue to do another surgery.  Chris' surgeon did it the first time - and it held - PRAISE GOD!!!  However, during recovery, he had to wear these arm braces to keep him from putting things into his mouth for a while.  Here he is sporting them at the shore.....  

And here is a better picture of them back at home at mealtime.  Again - he is smiling.  God has been SO merciful to him over the course of all that he has gone through!  Chris really is a trooper!

After that we had a break for, well, around 7 years.  And now, the time is rapidly approaching.  Since November, Chris has been wearing one of these every night.  This is to move his jaw forward.  What you can't really see is his rapid expander which is making a space in his jaw for his next repair.  When they do the palate, they leave the jaw alone.  Chris' jaw has never been complete.  If you look into his mouth, his upper gum-line looks like it goes all the way across - but there is no connection in the bone.  So, the expander had to go in to push them away from each other to make room for the surgeon to do his work.  That meant a risk of fistula (opening) in his palate (which we were blissfully unaware of!!), but again, praise God!!, his palate remained closed.  The head gear allows us to "skip" a surgery - it is moving his upper jaw forward as it develops.  That way it will not have to be done surgically later.

I was hoping for a general idea as to when we would be traveling out to Lancaster for this next surgery while I was at the clinic today.  Unfortunately, that will have to wait.  His surgeon is really liking what his orthodontist has done.  That is good.  He does have a tooth in sideways which will have to be moved and which she is planning to start working on on Monday when we see her.  We will have x-rays then as well.  They will be sent to the surgeon, and then we should have a better idea.  I am on the edge of my seat here.  It was going to be March, then April, then July.  Still hoping for July.  That way by August (and our trip to the shore) we will be finished with all of the medical appointments and can really enjoy our vacation!  One thing Chris, his orthodontist and his surgeon decided on today....  He can do this really cool trick where he shoots water out his nose.  After the surgery, well, that hole will be sealed off.  So all three have decided it should be video taped for posterity.  They just all have to convince mom......

Please pray we get some dates soon....  : )  In the meantime, that I would be patient and REST in God's PERFECT timing!!!  And smile - just like my Kate and Chris??  : )

Our CHOP Visit

Well - we got back about 2 hours ago now.  Sorry it took so long - we had prescriptions to fill and children to fetch and get settled....



Kate was checked and also had an echo-cardiogram.  Her heart is perfect.  Her pulse is still off.  The doctor feels this is because of the fact that she is dehydrated, but also believes that there is definitely some "electrical" problem in the heart itself.  We were given the option of medication for life or a procedure called catheter ablation.  After talking it over with both the doctor and Katie, we feel that the procedure is our best route.  This is a tough decision since Kate could have this the rest of her life and it is not life threatening, but the procedure (although considered incredibly safe) carries with it some risk.  The idea of her being on a restricted diet and on beta blockers for the rest of her life wasn't really appealing either.  And the doctor seemed to feel that even if we went with the medications for now, we are looking at the procedure in the not so distant future since she can have these episodes even on the medicine.  Only after the procedure (she was very forward about the fact that this is not a surgery) would she be considered "cured".  Plus although the SVT itself isn't risky, she could be at risk if she were, say, crossing the street and passed out, or passed out while riding a bike - things like that.  And the doctor is pretty sure she was near to passing out on Sunday.  All that said - we should be getting a call in the next day or two with a surgery date.  The doctor thought probably the first or second Monday in June (she only does surgery on Mondays).  In the meantime, Kate cannot have caffeine (including chocolate), is still restricted in her activity, and will be taking the beta blockers to help prevent another episode.

We are tired from the day, and mostly just trying to get some rest from all the excitement.  It is awesome to know that the Lord has had his hand on us all throughout the day.  We are grateful that Kate's heart is OK other than this, and that through out all of this she has never been in any real danger - and that the episode she had on Sunday did not do any damage to her heart at all.  We have much to be thankful for!!  I will let you know when we have a date.  Also - to add a twist, we have an appointment for Chris this Saturday (previously scheduled!) to get a date for his jaw surgery as well.  It looks like we will have a busy summer!!  Thank you for praying!!  

(This is me and Kate at her last birthday party- fun stuff!!)