Monthly Archives: July 2012

Lessons

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I took Isaac to participate in the last night of vacation Bible School Friday night – and as I watched him there, I thought about all of the things I have learned from him and because of him.  First of all, watching him absorb what was happening around him was amazing…..  he LOVED watching the big kids sing and dance and couldn’t believe he was allowed to stand up and dance too!  I realized it’s these instances of “normal” activity that teach me the most, and often strike me the most.

So, as I sat there I realized that Isaac really has been responsible for some incredible lessons over his very busy three years here with us.  Some are very obvious, others have come after deep thought and reflection.

The list begins……….

Break the rules – If we had followed all of the rules laid out for us by the many experts that take care of Isaac he would not have much fun.  He never would have gone “swimming” in a lake (first because of the water that could enter his trach, second because of the sand that could enter his trach!).  Isaac wouldn’t have attended school (as many thought the germs there would be his downfall)… he did get sick, but he also got to make friends and play and ride a yellow school bus – totally worth it!

My boys have spent more time in the ICU (and by time, I mean more than one hour) than any child should ever have to (either admitted or just hanging out with a big brother) – and I know they’ll both be much better men for it.  Talia has spent an extraordinary amount of time at the Ronald McDonald House, and she too will be a much better person because of it.  She does not look twice at a child who has no hair, or tubes coming out of them – this is a life skill most kids don’t learn.

Staying up late is pretty okay – Isaac doesn’t always sleep at night like other kids, typically at least once a week we have a late night party in our house.  When Isaac’s 11 pm nurse comes through the door he is awake to greet her.  I have learned to cherish these times, this is time that we get one on one with our Isaac.  This past Friday night we got up at 10:00 and danced to the Wiggles, IV and all – and we had a blast!  We watched this child lay in a hospital bed “sleeping” for many, many monthss – we have come to appreciate all time we have with him when he is awake and showing off that personality. 

Repetition of mama is a beautiful thing  -Isaac had NO voice from the time he was trached (at 4 months old) until he was 2, after several vocal cord surgeries.  He cried silently, he couldn’t yell for help or attention when he needed (or wanted) it, and he couldn’t say mama.  For the past year and a half he has explored his voice and his sounds and recently began saying mama.  He can say it over and over and over, to the point where I think “enough already” – then I remember his silence.  The sound of mama (even if said in rapid succession for what seems like 10 minutes) is beautiful! 

Family is more than blood – something I’ve talked about before, our hospital family.  We have met families that we never would have taken the time to know, because Isaac put us where we should be to meet them.  Our EA family is HUGE, and has grown to include many others.  It is important to know someone who lives your life, and to have someone to talk to about things that not too many people understand.  In watching some families fight for their children’s lives, we have seen others that don’t fight hard enough.  We have seen good and bad – and learned how hard to fight. 

We have learned how to fight – and fight, and fight, and fight!  We have learned that there is someone out there with an answer, it just may not be in our backyard.  We know that doctors are amazing, and the doctors that work with Isaac are more than amazing.  We have also learned that we have to push sometimes to keep some of those doctors listening to us.  Many of us “medical mamas” could rival most stalkers in our abilities to track down a doctor for an answer.

Essentially all that we have learned can be summed up in a few ways.  Always appreciate what you have, we have seen the worst things that can ever happen to a person, and because of that we appreciate what we have and know that in the grand scheme things could always be much worse.  When your gut tells you something, listen!  Push and fight for your baby, and sometimes doing that means making some people angry and earning a reputation – which is fine, because that means they are at least talking about your baby J 

Isaac has taught us much more than this – and he will continue to teach us.  We look forward to the lessons and the fun!

On a side note – today Isaac started showing some “sick” signs……  small signs that most people wouldn’t think twice about, but we know can be trouble.  We are nailing him with meds from every direction (the schedule is ridiculous!!) – so far no fever or lowered oxygen rates (which bring about instant “how soon can you get to Minnesota?” discussions) – so hopefully we are catching it early.  He had a great time hunting for monsters with his new flashlight tonight – another sign that he’s not too sick yet….. please send positive thoughts for no new major sickness.

Home :)

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It feels like we’ve been home a lot longer than 6 days, maybe it’s because Isaac has had such an awesome 6 days :)   He hit the ground running, the fun hasn’t stopped.  Isaac has had a blast at therapy, and enjoyed several evenings running with his cousin Brookyn and enjoyed a visit with his friend Ryan yesterday. 
Today we visited an “indoor playground” – he LOVED it.  Just when I think he can’t be any more amazing, he does it…… he ran through the door and took off for the climbing equipment without looking back – he had his nurse and I climbing and sliding to keep up (with a suction machine hanging from our shoulder!).  Every bit of soreness was worth it – anytime we can give Isaac a chance to be free and brave it’s worth it.  So much of his life is not normal – he spends a lot of time playing in hospitals, making friends in hospitals, doing therapy in hospitals – you see the theme….  It makes us appreciate the the things that normal kids and families do so much more.  We’re looking forward to a few good air quality days here so he can go out and ride his scooter and play with the neighborhood kids who are slowly adjusting to all of his “accessories”. 

I called MN today to give a report on Isaac’s chest tube output – so far about 2 teaspoons, nothing since last night – hoping that is little enough to get the tube out!  They will let us know tomorrow, then there will probably be supplies that need to get to us in order to do it in a Dr. Hess approved manner.  We are so lucky to work with a surgeon who is willing to let us do things at home that in all honesty – we really shouldn’t!  In the past we have removed a PICC line, and a chest tube right here in our living room   – kind of scary, but worth it to avoid ONE more trip to hospital to have it done. 

If things go according to plan we’ll have a few months (hopefully!) before our next trip to Minnesota – from now on we would only need to go for esophageal dilations, in Isaac these are every 2-3 months.  Essentially the doctor blows up a balloon in Isaac’s esophagus, stretching it where it was connected and tends to scar.  Pretty simple procedure – but as we learned this past fall, it is one that should only be performed by Dr. Hess.  So, our 3 day weekends in Minneapolis will continue for as long as Isaac needs them to – and we’ll enjoy the opportunity to catch up with friends and show Isaac off to the doctors and nurses that are responsible for how well he is doing!

quick Minnesota update…..

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We had 10 fun days at home before arriving back in Minneapolis Wednesdsay night. As always, it is nice to be back and see friends – but so hard to be away from family and friends back home.
Isaac had his OR date with Dr. Hess this morning. He still has a small fistula tract, so he still has a red tube protruding from his side! Dr. Hess changed it out, and told me to call in a week – if nothing comes out of the tube we can pull it out at home. If it does put anything out we’ll have to see what Dr. Hess’ plan is, I’m guessing it will somehow involve Isaac returning to the state of Minnesota. Dr. Hess did tell us in no uncertain terms today that Isaac is not to have any dilations by anyone else, we hope he plans on practicing medicine for a long time – we had already decided nobody else will touch Isaac’s esophagus! This will mean more trips to Minnesota for dilations, but we’ve done it before and can do it again.

Isaac came out of anesthesia beautifully today, none of the wheezing and coughing we saw last time. He came to the PICU with me to visit sweet Vivica and her mom – it was such a relief to see them and hug Vivica’s mom. Vivica is doing well, they are hoping to close her chest up tomorrow and then she should get to start waking up – Isaac peeked in on her from the door and then did a few laps around the PICU – some things never change :)

Tonight we got to visit with our friend Silas and his parents and see the Osman family (our VA friends), sweet Rachel Osman did an awesome job chasing Isaac through RMH and keeping track of him, a big job for a little girl! Silas has grown a head of beautiful curly hair, and came into town tonight for a photo shoot for his upcoming Make A Wish trip.  Jacob Osman is an amazing little boy, we met his family when Isaac was just 6 months old and at the Ronald McDonald House with us – they were there with his older brother Eric who later lost his battle with ALD, they are now there fighting the same fight for Jacob.  To say this family is amazing does not do them justice.  We only see them in Minnesota, even though they live about 30 minutes away from us, but we are very lucky to have met such a strong family. 

Tomorrow we will make a trip to Ireland’s house, because we can’t come to Minnesota and NOT see her :)  

Our return trip to VA is still on for Saturday – we already can’t wait to get home!

Back to Minnesota

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Tomorrow we fly back to Minnesota, I finally learned recently not to bother unpacking the suitcases completely.  We are hoping to be home Saturday, but learned after our last trip to arrive with enough supplies to keep us going out there for a bit longer.  With any luck, Dr. Hess will think the chest tube can come out – which would equate to full healing.  It is possible that he will replace it, which will either keep us there longer or bring us back in a few weeks – which is totally worth it to get Isaac healthy. 

Of course we will see lots of friends while we are there.  We never leave the state without visiting Isaac’s soulmate – Ireland.  She was born with the same birth defect as Isaac, we were fortunate enough to meet just before Isaac’s first birthday, Ireland is an older woman and had already been down this road a few times :)   Isaac and Ireland spent time sharing a room in the ICU while each stretched an esophagus.  Of course, during this time they were both completely paralyzed and sedated – giving us moms times to completely plan their future courtship and marriage.  It is remarkable how our families just clicked – not only were our children destined to marry, but it was like we had all known each other forever – this may be because we were living very similar lives. 

It is very hard to describe the relationship developed with our “hospital” family.  We easily refer to them as family, because we have that type of relationship – they are our family.  We have witnessed each other’s worst days, and celebrated the best.  Greg and I lived alone in Minneapolis for 8 months, we had visits from family, but we were facing all of this alone.  During this time we developed connections with AMAZING people that we never would have known otherwise.  We will forever be grateful to Isaac for giving us this gift – the gift to look oustide of someone’s appearance, and to get to know them in an environment that leaves little room to hide anything.  We know loss on a level that we never wanted to – we watched many families lose precious children – we learned how this can be done with dignity and grace, and how to carry on.  There are children we will honor and make sure Isaac always knows – his first roomate ever, Jesus……  his trach buddies Nora and Amayah……  His nighly visitor Riley – who used to walk the ICU with his mom and dad and wave at Isaac as they passed.  We also walked away from the loss of each of these children (and, unfortunately many more that we got to know while living at the Ronald McDonald House) knowing what strength and true love are.  It is an amazing thing to watch a parent fight for their child’s life, an even more amazing thing to watch a parent show their child how to leave this life – and give them permission to do it. 

When Isaac finishes up in the OR on Thursday we will go visit an amazing little girl and her family – Vivica.  We met Vivica and her mom through other hospital friends and again found that connection we have found with so many others.  Vivica is 12, she has fought and led an amazing life – with the love and support of her mom and older sisters.  Last Saturday night this awesome little girl received a new heart – her second gift of life (she had a kidney transplant several years ago).  A new heart!!  I cannot imagine how hard it was for her mom to send her in to that OR that night – the fear and excitement probably combined into overall anxiety at some point.  We were all up all night waiting for updates – and today Vivica is doing well.  It hasn’t been an easy few days, but today is a good day. 

And this journey, for so much of us, is really a day to day journey.  We live for the good days, and we survive the bad. I know that no matter what we would do this – survive.  Because of Isaac we have made friends that make it so much more than survival.  While we dread going to the hospital because all of the knowns and unknowns, we also look forward to it – because we get to see our family.  On Thursday I will go to visit Vivica and her mom, Donette - and I will give Donette the biggest hug I can, and we will cry together (tears of joy, and fear, and anxiety) and we will continue to live these intertwined journeys for the rest of our lives……..

Isaac’s Breeze Fundraiser

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For those of you not familiar with Isaac’s story please read here in a great article by The Patch or here for a quick update on my new little buddy!

In the meantime I will gladly tell you how wonderful the event we held this past Friday in Northern Virginia at the Breeze was.

My co-host, Suzanne, managed to gather up an insane about of donations from all over town. We then raffled them off throughout the night, raising over $2000 (including on-line donations)! Not bad for our first event.

The kids ran around, friends from all over attended, family, strangers, locals; you name it they came out for an evening of love and support.

Isaac managed to entertain the crowd with his brilliant smile and contagious energy as he ran, danced and giggled. If anyone ever feels a moment of sadness they need to be reminded that in this little boy’s young life full of struggle he manages to laugh and smile and love without fear.

Let’s hear it for Isaac!

Who are you blondie?

Please enjoy the photos, continue to support, donate if you can and stay tuned for our next event.

Special thanks to The Breeze, Suzanne, and the local businesses that helped out!  We couldn’t have done this without you!

-Kerry

Feeling the love!!!

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Last night the Saving Isaac fundraiser was held for Isaac and our family.  It was amazing.  While we’ve been flying back and forth to Minneapolis some wonder friends were coordinating this effort.  Last night brought together family and friends – some of whom had not been seen in person in 20 years…. wow!  Isaac was of course the star of the show – he had a ball running laps (literally) through the crowd and offering up high fives and smiles galore :)
We have said before that Isaac seems to know how very loved he is, he definitely showed us that last night.  There is no doubt in our minds that part of his amazing resiliency is due to the love coming at him from all directions.  He soaked it all up last night – words can’t describe how beautiful the evening was, to see Isaac basking in the love and attention he received.  We were thrilled to show him off and let him meet many of the people that have offered him continuous long distance love and support. We have realized, once again how loved and supported we all are.
I was excited to once again be contacted by President Obama’s Virginia campaign headquarters and asked if they can use Isaac’s story for a local article – even at the age of 3 Isaac is finding a way to influence politics :)
We head back to Minneapolis this Wednesday, hoping for a brief stay – but we’ll stay as long as we need to in order to keep Isaac doing well and get him healthy.
Our friend Vivica should be receiving her new heart tonight!!  We are very excited for her, and asking for prayers for not only Vivica and her family, but the doctors, and the family that is giving this amazing gift in the face of what has to be unbearable heartbreak.

To all of those who have shown us love and support…… thank you, thank you, thank you!  Isaac is absorbing every bit of it :)

-Kim

Sweet Return

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Message from Daddy,

Isaac and Mommy returned home yesterday and it was so nice to have a full house again. I feel a void whenever any of my kids are away, especially when Isaac is half a country away. It was all worth it though, seeing that amazing smile of his when I got out of the car at the airport to attack him with a huge hug. He looked up at me and signed “Daddy!” and squirmed to get out of his stroller. He had this amazing look in his eyes like “He’s here, he’s here… Daddy’s here!”

Thoughts start racing through my mind as I’m hugging him, he reminds me of how strong he is as he gently caresses my shoulder while I hold him. I’m thinking “Hey, the parent is usually the one doing that”… Isaac though, is so forgiving and strong that no matter what, he’s eager to comfort Kim and I. As he caresses my shoulder, it’s as if he’s saying “It’s OK Daddy, I’m here”. I think of all the times we’ve had to send him off for hours worth of surgeries, hold him down as a doctor shoves a metal rod into his g-tube hole in his stomach to stretch it back out, the times we hold him down so a doctor can shove a telescopic scope down his nose as tears run down his cheek… Yet after all of that, he still loves to give us love. It feels so good to have him home and running around rambunctious and happy. At the airport, as I’m in my long embrace with Isaac and Kim is jumping in the car door to kiss Elijah… the earth stood still for a moment, the ‘music’ stops, time freezes… I look around and see people around us looking and smiling, almost envious of the happiness of that moment… a sense of serenity falls over me… That’s what Isaac brings to the world; pure joy.

To say I’m proud, just doesn’t do the real feeling justice. I’m thankful everyday that God chose me to be this little hero’s Daddy. I’m not sure what I did to deserve such an honor but I’m glad it can be.

Daddy