Ho Hum-

So here it is Monday night.  Saturday we picked grapes and juiced them.  A big job and this was the first year that we picked in the mist.  It was cold and wet but we got it done.  Yes, we will have grape jelly again this year.  It is fun because the whole family takes part.  I like that.

Well Hannah had her esophagus dilated again on Wed.  Surgery was a little over an hour late and so that was hard but that is how it goes.  Everything looks good and they are not real sure why she is having the problems that she is having.  This leaves us with something not functioning right.  Not a lot of options now.  None look really good.  We are now in the territory of “rare”.  Even our surgeon said I bet you are tired of hearing that with Hannah.  Yes, Dr. Partrick we are.

I look back at where we have come from and I cannot believe it.  You know Hannah was 2 lbs. 6 oz when she was born.  We all buy a 5 lb. bag of flour and think nothing of it.  Believe me, there are times when I almost cry when I pick these up.  Man, she was tiny.   I still remember the day she was born.  I was so scared that we had lost the baby.  That was a very quiet ride and we were relieved when they found her heart rate.  I remember the day that they packed her up to take her the Children’s Hospital to have a heart surgery.  I had to stay in the hospital and Todd went with Hannah.  She looked like she was packed in a spaceship.  Those EMT’s were so nice.  They tried so hard to let me touch her one last time but I couldn’t.  That, as Hannah says, was not a fun day.    I became pretty good friend with the parking lot attendant.   Funny how those things happen.  I remember being told that by the time she is three, Hannah will be a normal kid.  I would like to talk to those people.

Sometimes I want to scream it hurts.  I know, I am in a woe is me mood, but right now I am tired.  I am tired of surgery, I am tired of surgery not solving the problem.  Someone asked me on Sunday, have you asked God why you haven’t gotten your miracle.  Never thought of that one.  Maybe I don’t have time to ask.   I am so busy going from one doc to the next.  But then again maybe we have gotten our miracle.  The miracle that Hannah is here.  One of my best moments was when I saw Hannah’s face for the first time after she got her trach. 

April 20, 2004

 Is this not the most beautiful face of a baby girl you have seen.  I love this picture.  This is a miracle.  This was the first time we saw her face without any tubes!  Hannah had been on the ventilator for 7 weeks.  We tried to get her off but her airway was too swollen.  Basically, when Hannah got her trach it was do this now or she will not make it through the day. She was dependant on the vent but we needed to do all we could to give that airway a break.  Trach her and have her on the vent through the trach.  You know what happened.  She came off the ventilator.  Not only did she come off the vent but she was on oxygen in less then 24 hours.  That is unheard of.  You betcha that is a miracle.   Monty, a dear friend and someone who we affectionately call the “Trach Guru”, trained us on how to take care of Hannah and he gave us our daughter.  He taught Todd and I that Hannah is a normal kid, and as I like to put it,  just had a few extra bells and whistles.  Hannah and I just saw Monty last week.  He, once again, reminded us that his gray hair is from Hannah and that yes, she should not be doing so well.  So maybe I have gotten my miracle.  I wanted the “BIG ONE” as I called it, complete and total healing, but that did not happen.  But Todd and  I have seen the handy work of God.  We have seen it in many ways.  Through Hannah, through the kiddos we have met along the journey, through the friends we would have never known.  I know I am blessed.

It is really hard having a kiddo who has medical issues.  She looks good on the outside but there is a lot going on on the inside.  Todd has a list of people you do not want to know you by name.  Your mechanic, your pharmacists, the parking attendant at the hospital, the staff in the surgery pre-op and post-op, the ED staff.  We unfortunately know most of these.  One year we were in the ED, or ER, so often that the gal that checks you in knew Hannah’s name and birthday by memory.  That is bad!  Hannah is now so aware of what is going on around her it is very difficult to handle.  Her whole word sometimes revolves around whether she is going to get a shot or not.  It is sad when she knows the docs by name.  Or nurses for that matter.  I know I am rambling.  It has been hard these last few days.  Her GI issues are really difficult to deal with.  We see the doc on Friday so until then I will take one day at a time and study what I think is the problem and pray that I am wrong.  And with that I leave you with a picture of Hannah doing yard work.  Shouldn’t we all look so good doing yard work!

Hannah is always ready for the Ball!

Come back Democrats, come back!

Well our Denver Daisy finally is here in full force.  (Picture soon to come)  For those of you who may not know the story, here it is.

Denver thought it would be a great idea if during the democratic convention we have a “special flower” throughout the city.  That way there would be flowers all over and bring the community together.  CSU and the Denver Botanic Gardens bred or cultivated the Denver Daisy.  I do not know how you come up with a new flower so if my terminology is wrong, forgive me.  I went to a couple of events and they passed out the seeds and wanted as many people to grow these daisies.  So on Mother’s Day we planted 2 packets of these seeds.  We followed the directions and saw nothing.

We thought we did something wrong until Todd read an editorial from a Denver city councilman.  He too had planted his seeds and followed the directions.  He is a green thumb and he couldn’t get the flowers to grow.  The problem is you have to really baby the seeds to get them to grow.  We have laughed about this because you can see spots where businesses and others, we think, were trying to grow these flowers.  So we stopped trying and thought our flowers won’t grow.

Then we saw it one day.  A little sprout.  Could it be, I think yes!  We have a Denver Daisy!  So we have been watching our one Denver Daisy grow very slowly.  So please come back democrats because we have our Denver Daisy.  We are republicans and we joined in the spirit of you coming and grew our flowers.  Please come and see!

Denver Daisy Countdown!

Come out! Come out Denver Daisy!

Here is today’s picture and yesterdays.  I think we may have a Denver Daisy before the weekend is over!

We are fearfully and wonderfully made

As Todd and I drove home from the hospital I kept thinking about this verse.  Psalm 139:13-14 “For You formed my inward parts; You covered me in my mother’s womb.  I will praise You for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well.”  Here we have seen the most beautiful airway and yet we still have some issues.  Am I discouraged?  No.  I stand in awe at how we are created.  Everything is suppose to work together.  The body is an amazing thing and Todd and I have been privileged to see many things that most people do not even think twice about.  Hannah still has airway issues but it is because parts of her left vocal fold are not working right.  But get this- the left vocal fold use to be paralyzed and now it is not.  So we go from one thing to the next.  We are like a woven tapestry and if there is a hole or a tear or a rip the body works to correct the problem.

Do you see where I am going with this?  The body of Christ.  Our physical body is so amazing and intricate that we cannot comprehend it all.  One thing Todd says a lot when it comes to Hannah is “the doctors practice medicine.”  It is not an exact science.  One of Hannah’s docs even said, with all that we know about the body we cannot pinpoint why the body heals itself.  Think about that.  We are fearfully and wonderfully made and we are to be functioning at our best.  If our body has an injury, the rest of the body works together to heal that part.  We know this but cannot figure out how it is done.  Isn’t God amazing!  Ok church we are the body of Christ and when one is hurting we need to go and heal.  We need to come together and work to fix the injury.  The rest of the world will not understand it but we need to show God’s love.

On Sunday at church, our congregation prayed for us.  This was something that was not planned and to be frank I had asked the church staff to not share a whole lot.  We have been through a lot and sometimes I think the less people can give me their opinion the better.  We have never had this happen to us and look what happened.  Hannah’s airway is healed.  I have never felt so much support from a group of people in my life.  I am truly stunned here.  I have grown up in the church and at times, the church has let us down,  but what we experienced on Sunday was the body at its best.  It was believers coming along side us and carrying us and bearing our burden so we could rest and heal.  We are still getting support and many are now rejoicing with us.  Our church played an important part in all this.  One- God hears the prayers of His people, and two they came together as the body of Christ in the purest form to support a little family who is dealing with a child who has medical issues.  Let me tell you, you do not find that anywhere.

I am so emotional right now I can’t even tell you what it is from.  Is it from the best looking airway I have seen or is from the body of Christ coming along side me and my family to see us through a difficult time?  The more I think about it, I think it is the latter.  I thank God for our family at Ken Caryl Baptist Church.  You are truly the hands and feet of God and I am so glad that we are apart of the family.

Oh what a beautiful airway!

This use to be so swollen you could not see down her airway.

Well we have just gotten back from the hospital and got some good news.  Hannah’s airway looks the best it has ever looked! I had to share pictures because these are such beautiful pictures.  Nice and pink and it is the largest it has ever been.  So this is good news and Todd and I are very relieved.  I think that it is finally safe to say that her airway is not the major concern that it has been.  We see pulmonary tomorrow so we will see what they say!

There is still some concern with her vocal chords and the symptoms that Todd and I have been seeing is from this issue.  So we need Hannah to grow and hopefully this will work itself out too.  Hannah really needs to put on the pounds!  That is the prayer request.  Bulk up baby!

Hannah just told me that it is just not fun at the hospital!  I agree Hannah, I agree.

Thanks-

Is it tuesday yet?

Well here it is Sunday and I am already wiped out for Tuesday.  Hannah goes in for another bronchoscopy and a check of her vocal chords.  I know, no big deal.  I cannot even tell you how many bronchs she has had, I think it is around 25, something like that.  She will be under and they will check out her airway, see if it has grown or not.  Also take a peak at her vocal chords.  They still cannot figure out what is really going on there.

The stress comes with the fact that her airway has not grown since her trach came out a little over two years ago.  When the trach came out her airway was a 3.5 almost 4.  It is still a 4.  This is the size of an infants airway.  We have had a hands off approach because for some reason Hannah’s airway reacts so violently to anything.  We realized all this when she was trached.  Her ENT docs, pulmonary docs all agreed that the less we mess with it the better.  The problem is it has not grown.  We are starting to see side effects and it is time to really address this issue.  This is the scary part.  We are hoping that we have some options here.  When we were dealing with this a few years ago the only option was another total reconstructive surgery.  YUCK!  Rib cartilage and placing it so precariously, airway stints and all the good stuff.  Not to mention five hours!  Very, very difficult to sit through.  I am hoping that now, two years later we have some different options.  Dr. Kelly is one of the best in the nation if not the world that deals with this.  Dr. Yoon is just a great ENT.  Both docs have been with us from the beginning and I know they have lost sleep over Hannah.  We are in very good hands.

And yet, I am still freaked.  It is her airway.  It is not her esophagus but her airway.  The esophagus is still a problem but it is easier to fix, trachea, not so much.   If you cannot breathe you are in a whole lot of trouble.  Honestly, my biggest fear is that she will get trached again.  I know we could handle it but we have really  enjoyed not having it.  I love hearing her talk and laugh and sing!  But you know what, I could still hear those things.  It will be ok.  And she is not trached yet!

I am scared out of my mind but God has a plan.  We have been on an incredible journey and I love it and hate it at the same time.  Gone are the days of me feeling guilty for giving birth to Hannah too soon.  She is here and has continued to stump the docs. Can I tell you that part is fun, we have seen God’s handy work many times and we know that it is Him.  Many times we have been told she should not be doing so well.  I know that God has a plan here.  I just want His plan to be, Dr. Kelly and Dr. Yoon telling us, we don’t get it but that is the most healthy airway we have ever seen!  So I guess I will wait on the Lord and truly try and renew my strength.  I want to soar like an eagle, I just feel a little burdened right now.

John 16:33 – In this world you will have trouble but TAKE HEART, I have overcome the world.

I Peter 5:7 – Cast all your anxiety on Him because He cares for you.

Psalm 34:4 – I sought the Lord and He answered me; He delivered me from all my fears.

Job 42:2 – I know that You can do all things; no plan of Yours can be thwarted.

We covet your prayers during this time!  Check the blog for updates!

Love-

JoEllen for all of us!

YES ON 51!

This picture has nothing to do with 51, but the kids look cute!

Ok, I have struggled how to handle this issue and here with my blog I can voice my opinion.

We have an incredible election ahead of us and in Colorado we have an enormous amount of amendments to vote on.  One amendment cannot be overlooked.  Amendment 51 is asking for a tax increase and the money will go to developmentally disabled adults and preschool children.  Approx. 1200.  These are people who qualify for assistance and are waiting years and years for the assistance they qualify for.  They wait an average of 15 years.  15 YEARS!  Can you imagine?  This is a disgrace!

Advocates have tried through legislation and other means and this is the only way to help these people.  These are people whose families are financially strapped because all their money has been used to help their adult children while they are waiting for the assistance they qualify for.  This is not a time to look the other way and say I cannot support a tax.  We cannot let this slip through our fingers.

I could give you sob stories but would that change your mind.  How about this one.  There was a child born prematurely.  She spent 87 days in the hospital and her hospital stay was around $750,000.  Her family had great insurance but had to pay their co-pays and what the insurance would not cover.  She came home with extensive medical needs and then they were told that opps!  you should have been on medicaid when you left but we will put on the waiting list.  A six year waiting list.  The debt has gone through the roof and luckily people fought hard for our waiting list and we got off in 18 months.  Yeah this is our story.  I can tell you if we did not get Hannah’s medicaid when we did we would probably have gone bankrupt and be living with one of our parents right now.  Seriously.  Wouldn’t that have been fun.

Now 51 is asking for funding of a different program then what we are in but they are closely related.  I want you to think about us and some of you were very upset when we were waiting for something we qualified for.  Can you imagine if we were still waiting?  Please do the right thing and vote yes on 51.  This would NOT tax groceries, gas and prescriptions.  Imagine what your extra 2 cents could do.  It seriously would change a life!

From my Roving Reporter, Rocky

Hi all!  I am writing this post because JoEllen thought I might know more about it.  Yesterday we had quite the excitement around here.  Normally things don’t disturb me too much and I just hang out on the couch all day.  But yesterday, it was pretty crazy.

My family ran some errands and come home around 11:45.  I know this because I heard the car and I peeked out the window.  I noticed that there were police looking around and a few neighbors out but nothing to worry about.  The family left at 12:30 to go to a Birthday party and I noticed a police man talking to them.  He told them to go and not knock down the orange cones set up.  There were cones set up on all the streets.  Now that is something different.  Oh well I snuggled down to take a nap.

Things started hopping a little later.  Police were knocking on peoples doors and telling them to leave.  They set up this white tent across the street and the police were dressed in funny clothes.  I think Todd and JoEllen said they were dressed in full body armour.  I was getting a little worried.  Police were going in and out and I saw some of my friends being picked up by the Humane Society.  I was really confused.

Then around 3:30 I hear something at the back door.  I try and check it out but couldn’t see anything.  I begin to recognize a smell, I am a beagle you know.  Ah yes, that is Todd, what is he doing.  He comes through the front door and grabs the leashes!  OH BOY!  I am always up for a walk.  I can sense something is different and let me tell you, Blueberry was pretty stressed right now.  She had no idea what was going on and was just being silly.  Todd got us outside and started to walk us north on Sterne.  The moment he saw the police with guns, big black long ones, he walked to the back yard.  However Blueberry got scared and ran off!  Luckily she just wanted to get back in the house.  We went through our neighbors yard and then to the car.  Oh it was fun seeing the kids.  They always smell like good food.  Hannah usually has some left on her face and I try and get a taste.  I am not sure what a birthday party is but all I know is there is a lot of good food there.  At least by the was Hannah’s face tastes.

Anyway we headed to my friends Busters house, Walker and Hannah’s Papa’s house, and hung out there for awhile.  I found out later that a police officer told JoEllen that there was a drug situation and they were preparing for the worst, whatever that means.  All I know is that when we got home things were pretty normal and I had a lot to talk about with my friends around the neighborhood.

The Joys of SPD

So today I pick up Walker from school.  He had a half day today and I was looking forward to running some errands.  As he piles in the car, he melts down.  He starts crying and he is so upset.  Why?  Because he was on yellow in his class.  (His teacher has a “stoplight”system.  You stay on green you get a prize at the end of the day.  Yellow means be careful and red means call home to parents and you are in trouble.)  In Walker’s mind he was in big trouble.  This may shock you but he was in trouble for talking.  That’s my boy!  Funny how he does not find much comfort when I tell him I was always in trouble for talking. 

He slowly calms down and luckily he has therapy at 2:00.  This will be perfect.  For those of you who do not know Walker has Sensory Processing Disorder, or SPD.  His brain just doesn’t always seem to connect things correctly.  Walker has problems going down stairs at times because he visually cannot see them correctly.  He hears everything, and I mean EVERYTHING.  He has to know what every sound is.  He cannot tune out things the way you and I can.  If something rocks his world, it can ruin his whole day, which in turn can ruin the rest of the families day.  Think of it this way, he has all the ingredients to make a cake,  he just cannot always mix them together because he cannot always figure out what is next.  (It truly is very fascinating.  Check out www.SPDFoundation.net) He has been in intensive Occupational Therapy for the last month or so and it has been a miracle.  Walker will swing on the swing and not freak out.  He is riding his bike, which was very difficult for him because he always thought he was falling down, seriously, not afraid he was falling down, he THOUGHT he was falling down.  He has more self confidence and his meltdowns have decreased tremendously.  Shameless plug for the STAR Center and Lynn Whitzen, and Melanie Hunt.  (Melanie has worked with Hannah and has down wonders getting her to eat a variety of foods.)  Also for Dr. Lucy Miller who is the leading researcher and expert on this disorder and who I am so fortunate to sing with, and Lynn, in the Cherry Creek Chorale.  Back to Walker-

We leave therapy and he had a great session.  He did amazing things and seemed to be fine.  Key word, seemed.  I decide to head to Walmart to get a gift for Tommy, Walker’s cousin.  No problem, right?  So we find a gift for Tommy and it happens to be in an aisle with some stuffed dogs.  Oh we all know how Walker loves his dogs.  I look at him and he says,”I know we are only getting something for Tommy.”  Good, I think, we are all on the same page.  Walker looks at me and says, “can I look at the dogs?”. 

I say, “You can look but we are only getting something for Tommy.”

“I know-  how much is this dog?”

“Too much.”

“Is this dog less?”

“Yes.  Ok we are ready to go.”

Then the tears come.  Oh great! Here it comes.  I grab Hannah and I am trying to get out of the store as fast as I can.  So far, not so bad because he is not screaming at the top of his lungs.  Hey, that therapy is working!  I try to get him to calm down but to no avail.  He starts telling me “I want to stop but I can’t.”  Oh my heart breaks.  You know what, he really couldn’t.  His whole world was rocked by getting on yellow and he recovered some from that but not enough.  Not getting that dog upset him to a point that his world collapsed.  So we get outside and he is telling me to help him.  We stop and I say “how can I help you?”  “help me breathe.”  So we both stood there in our little bubble in the middle of the Walmart parking lot breathing together.  In out, in out.

It is at this point that I knew we were being watch and I wanted to scream.  Not scream out in stress but scream to the world “Do you know what a break through this is.  He knows that he cannot control his world right now and he is doing the best he can.  Judge me all you want but at this moment I am so proud of my son.”  And yes I had some tears in my eyes and I looked at Walker and said, “let me carry you to the car.  You have had a hard day and we all need to regroup.  It’s ok big guy because you are really trying and it is ok to cry.”  Then he let loose, all the way to the car. 

Oh what a day!  But I can tell you that if this happened  two months ago that child would have been in Walmart screaming at the top of his lungs.  I would have been crying but not tears of joy, tears of “why me!”  He has come so far and I will remember this day for a long time.  So we have tomorrow and tomorrow is a new day.

You have got to be kidding me!

Go Hugs For Hannah! I mean Go Rockies!

So the other night Todd and I went to the Rockies game with our friends, Liz and Tim Fallon.   As we were walking up to meet each other, I hear Liz groan, “Oh no, you have got to be kidding me!”  Tim has his shirt open and with a proud smile shows off the shirt he is wearing.  It is our Hugs For Hannah shirt from the March of Dimes Walk.  Todd starts laughing and then it hits me, they guys are wearing the same shirt. 

Oh funny story, but not that funny.  Just wait-

This summer Liz and I sang with our chorale at the Breckenridge Music Festival.  So on Saturday Liz and I have rehearsal and the guys stayed at the condo.  We come back to go out to eat and oh would you look at that, Todd and Tim are wearing their Hugs For Hannah shirts!  

Todd has told me that he is going to call Tim the next time we get together to check and see what he is wearing.  I don’t know, I like seeing the Hugs for Hannah shirts but two guys always dressing alike, well I don’t know.  Needless to say we have gotten some good laughs out of it and March of Dimes has gotten some publicity.  Isn’t that what it is all about!