So close to independent mobility

We are finally getting Chase to weight bear on his legs with this cool little contraptions.  Been many months of physical therapy leading up to this point but I think he's making some great progress.  He is 21 months old and for some reason, just prefers to use his upper body to transport himself from place to place.  As you can see from the drool on his shirt, he keeps my floors spic n span as he drags his body across my tile.  It comes in handy!!

In the picture to the left, you can see he wears special braces for his feet.  They help prevent him from locking his knees when he tries to walk.  So proud of my little man.  Things are slow going but he rarely complains.  Keep it up Chasers!

Anticipating..

We leave for Houston tomorrow for a much anticipated visit with a geneticist and pediatric cardiologist.  I have a million things to do to get ready.  It's 9:30 pm, I haven't even begun packing.  My mind just won't stop racing.  Ethan said something tonight that stopped me in my tracks.  I haven't been able to function normally ever since.  He said, "Mommy, do you want to have any more kids?"  I explained that I am not able to have any more kids because my body couldn't handle it. (4 C-Sections and a very thin uterus lining).  I then asked him why he wanted to know.  "Well, I want you to have another boy so I could have another brother."  I said, "But Ethan, you already have a brother."  "But, mom..he has a heart condition and can't play sports with me.  So, I need another one that I could play sports with."  My heart sunk with sadness.  I know that Ethan isn't old enough to really understand what's going on.  It's a lot for a 7 year old to comprehend.  After a big gulp, I began to explain to Ethan all of the things he would be able to do with Chase.  He seemed satisfied and quickly moved on, but I just can't stop thinking about it.  Just last week, Ethan said, "Mom, I can't wait to die."  "Ethan, what are you talking about?"  "When I die, I get to be with Chase and his heart will be better so I can play sports with him in Heaven."  Such a heart wrenching and sweet moment, but, how do I respond to this?  I feel like for the first time since I became a mom that I'm completely winging it.  I feel so inadequate, so ill-equipped.  There are so many questions in my mind about Chase that are unanswered. 

Just venting.  I wasn't expecting that one tonight.

So, tomorrow we embark on a journey to one of the top cardiomyopathy centers in the world.  I have no idea what to expect.  We are hoping to get a lot of answers and even more good news.  

Chase, I know you don't understand or know this quite yet, but you are one very very loved little boy.  Your brother and sisters fight over who gets to play with you every minute you are awake.  Your dad lights up just at the very sight of you.  Your radiant and very silly smile is infectious.  As challenging and stubborn of a stage you are in right now, my heart is bursting with love for you.  I want nothing more than to protect you from hurt, from pain, from sorrow or sadness.  I will do everything in my power to make sure you always know just how special you really are.  I am so blessed to be your mother.  You made me a heart mom...and I am one of the lucky ones.

A much needed update

We are adjusting little by little to this new life...both life here in Texas and to the reality that is our new life navigating Chase's condition.  After a crazy move, some welcomed visitors and many other acclimations along the way, we are finally approaching the ever sought after "settled in" feeling.  The process of moving just plain sucks.  This is our 8th move in 10 years of marriage.  You'd think we'd be pros by now.  But..each move becomes more challenging.  We've added a child to each of our last 4 moves and with more children comes a lot more stuff!

So far, we really like Austin.  Chase is really enjoying having more crawling space and has shown a lot of improvement in his mobility since we moved 5 weeks ago.  He has already seen 3 different doctors since we've arrived and is scheduled to see the Cardiomyopathy team at Texas Children's Hospital in Houston at the beginning of September.  I am quickly coming to the realization that Chase and I will spend much of our time together at doctor's offices.

As for an update on Chase's condition, we have learned many things.  First of all, some genetic testing results have come back from his initial visit to Dupont Hospital.  All of the gene panels taken have shown no genetic link to his hypertrophic cardiomyopathy.  In other words, so far he has not been identified as a gene carrier for the disease.  While this is good news, it also raises many more questions....why does he have this?  Is it a symptom of another disease or condition?  Our new pediatrician here in Austin brought up the fact that he may have muscular dystrophy.  Chase is older now and is really starting to show many signs of physical developmental delays.  His core and leg muscles are very week.  He is 16 months old now and is not able to weight bear yet.  In fact, when pulled up to a standing position, he locks his knees every time.  He still topples over pretty easily too.  This is where the muscular dystrophy comes into play.  After my visit with the pediatrician, I came home and spent some time on the internet researching muscular dystrophy.  My search left me completely heartbroken.  One of the 1st symptoms listed under MD was cardiomyopathy.  At this point, I was convinced that his cardiomyopathy was only one problem we'd be facing regarding Chase's health.  So, per the pediatricians recommendation, I scheduled an appointment for a neurologist.  

We were able to get in to see the neurologist quickly.  After examining Chase, he noticed he had some muscle weakness (hypotonia).  He didn't think it was anything too drastic but definitely wanted to do some further testing.  The neurologist didn't even bring up muscular dystrophy...and I couldn't get myself to ask.  I was too afraid of what he might say.  He said he wasn't sure if his hypotonia was connected to his cardiomyopathy.  There are still so many questions.

A week later, we met with the pediatric cardiologist here in Austin.  He was very interested in Chase's condition and history.  I finally got the guts to ask him about muscular dystrophy and he immediately said that he didn't think Chase had it.  Apparently, it is often associated with Dilated Cardiomyopathy..which is not what Chase has.  A huge sigh of relief but nothing is ruled out quite yet.  After doing another Echo and EKG, the Cardiologist was happy to see that there were no changes.  With Chase's condition...no change is the best possible news we can receive.  Since his heart is a muscle, and muscles only grow larger over time...no change means his heart is not getting thicker.  This will change as he goes through growth spurts and becomes a more active little boy.  It's kind of a catch 22....I want him to walk, but am fearful that it will speed up the process of his heart growth, due to an increase in his activity. We are looking forward to meeting with the team of doctors in Houston in a couple of weeks that only see patients with cardiomyopathy.  They will be able to offer us a lot more insight on what the future holds for Chase.

Chase also had his first physical therapy appointment last week.  His therapist was phenomenal.  She had Chase pulling himself up to a standing position within minutes.  She was very encouraged that he would be walking soon.  The next milestone is to get him to feel more comfortable on his feet so he can start cruising. 

So, that's the Chase update.  It's been a crazy month an a half but overall, I couldn't be happier about the move, about the care that Chase will be receiving and about all of the blessings that we've received.  The members of our church have been very welcoming and helpful.  Our neighbors are great as well. 

Although things are well, I can't help but continue to grieve the days that I didn't have to obsessively worry about tomorrow.  Chase's condition brings about so many unknowns.  Every time he has a doctors appointment, I am reminded how severe his risk is of cardiac arrest.  The thought makes me sick inside, but I push it away so that I can dwell on his life...not his risk of dying.  It's so easy for others to say that everything will be fine, it will all work out.  As hopeful as I am that Chase will live a normal life, I already know that his life will never be considered "normal."  He has a remarkable condition and will always live a remarkable life.

As a result of Chase's "big' heart, my heart has grown big in ways I never thought possible.  I love more fervently than ever before.  When Chase smiles, my heart practically bursts out of my chest.  It's a feeling I've never experienced.  I now experience this phenomenon will all of my kids...and it's all because of Chase.  I feel like I finally have a little glimpse of how much our Heavenly Father and Savior love us. As difficult as this road has been and will continue to be for the rest of our lives...I am so grateful for this trial.  I continue to be grateful for my new perspective.  Life is precious.  Children are precious.  Families are precious.  I'm so glad that my heart is swelling along with Chase's. 

Roller Coasters

I grew up only about a half hour away from several theme parks (Disneyland, Knott's Berry Farm, etc.) and remember as a young girl feeling the anticipation and adrenaline rush as I would stand in line for a roller coaster.   There is something about the smell of churros and funnel cakes, sounds of distant screams, and atmosphere of excitement that makes me giddy inside.  In fact, if you asked me when I was a young woman what some of the qualities I'd look for in a future mate, you'd better believe that a "love of roller coasters" would have to be on the list.  I always knew that I wanted to have an even number of kids so that everyone would have a buddy to sit by on a roller coaster.  Strange, I know. 

People who know Jeff and I really well know of our absolute obsession with roller coaster's.  There is not a roller coaster out there that we wouldn't love to try.  While living in PA, we spent 2 summer's taking many trips to Six Flags Great Adventure both as a couple and as a family.  I recall dragging several of my friends on rides with me despite their kicking and screaming with hesitation.  I couldn't be happier when I started to see the same love of roller coaster's start to grow in my oldest son, Ethan.  In fact, last summer at 6 years of age, he rode this:

So, why all this talk about roller coaster's?  Honestly, they've been on my mind a lot lately.  I've had many conversations over the last 3 weeks about our recent news regarding Chase's heart condition.  Many people have expressed how grateful I must feel that I found out about his heart before it was too late.  It's all true.  I am so grateful.  It would have been the most devastating thing to find out something was wrong without even having an opportunity to intervene.

What I couldn't figure out was...why am I still so sad?  He's still here with me.  I get to hold him, kiss him, play with  him.  What is my deal?  While talking to one of my best friends, she said something to me that made so much sense.  It helped me pin down why I was feeling so sad even though Chase is still here..and doing well.  

I'm not mourning the loss of Chase.  I'm mourning the loss of the life I thought we'd have.

Chase will never be able to ride a roller coaster.  Because of his heart condition, he will never be able to be an active little boy.  He will never be able to play basketball, soccer, football.  I know, I know.....there's always golf, music, art, etc.  While that's all true, it still sucks.  All of the things that I love to do involve being very active.  I've always dreamed of water ski trips, snow skiing vacations, hiking, swimming.  How do you tell a boy that he can't be involved in things that they innately want so badly to be a part of?  In the not too distant future, Chase will probably ask, "Mom, can I play on a soccer team like Ethan?"  How is explaining to a little boy that they can't play sports part of living a "normal" life?  It's going to break my heart watching him sit on the sidelines as he watches is 3 older siblings fulfill some of their dreams.

Please know that I realize that sports aren't for everyone.  It's hard for me to imagine that because sports was my life growing up.  I realize that my dreams aren't my kids dreams.  I have never been that parent that expects my kids to do what "I" hope for them to do.  The irony in all of this for me is that of all 4 of my kids, I can already tell that Chase has the least amount of fear.  He watches his older siblings ride their bikes, swim, run...and I can barely contain him in my arms.  He's not walking yet but I can tell he just wants to take off.  He has no idea yet that he will only know a life with medications and limitations...not sports.

I have no doubt that Chase will rise above.  In fact, he may not even care about sports.  There really is so much more that life has to offer.  I am selfishly putting words to the sadness I feel in my heart for Chase.  I just want him to be happy.  I don't want him to ever have to be held back from anything he desires in life.

Today, I just feel like complaining.  The day to day things have become so much harder.  Watching Chase sleep and not wanting to leave his side to even take a shower, having to explain his condition when he looks perfectly healthy, endless doctors appointments, waking him up in the middle of the night to give him his medicine, the constant worry that I'll not hear my alarm and miss a dose, visits to the ER every time he even gets a cold, wondering about the future and if there will even be one, spontaneous bouts of tears.  It's just all so overwhelming.  

This is where the roller coaster comes into play...again.  MY EMOTIONS.   They are all over the chart.  One day, all I feel is gratitude.  In fact, most days...all I feel is gratitude.  I am willing to give up or sacrifice anything for my kids.  If I never get on another roller coaster ride again in my life so that I can be there for Chase...so be it.  Doesn't mean that it's still not hard.  I am trying to learn to walk forward with faith and with a grateful heart, always and in all things.  I know without a doubt that my Heavenly Father has a plan for my family.. that it is His plan.  Not mine.  His plan will always be better than my own.  Every single time. 

I am grateful...but I am also mourning.  I'll get over myself tomorrow.  I just wanted to vent.  Thank for being patient with me.

I can do hard things...  (after I hug my kiddos and go take a much needed nap!)

More good news

We spent about 5 hours at CHOP yesterday for a much anticipated appointment in the cardiology dept.  It was time for Ethan, Hayley and Brooklyn to be screened for HCM.  Each of them had EKG's and Echocardiogram's.  They were all troopers. 

The good news?  They were all free from HCM...so far.  The cardiologist explained that until we know where Chase's condition came from, they are not completely out of the woods yet.  They could be carrier's of the gene or protein that causes HCM but it has not presented yet.  We won't know the answers for a while.  Chase has an appointment with a genetic counselor next week.  We'll see if we can get any more answers then.

For now, I am elated to know that they (or I) don't have it. 

Another bullet dodged..

Treasures

When Jeff and I were on our way home from the hospital with Chase, we were discussing our new found perspective.  Somehow, the world looked different all around us and all we could talk about was our kids..and how blessed we've been.   Because we really didn't (and still don't) know how long Chase will be with us, we decided that we could no longer put off getting a family picture.  So, I picked up the phone, and called my friend Melia. No only is she one of my best friends, but she is an AMAZING photographer.  I have always been one of her biggest fans.  I told her about Chase and asked if she'd be willing to do a photo shoot with our family.  She showed up at our house the following day.   Such a great friend.

During the photo shoot, Chase was super grumpy.  He was still adjusting to his medication.  That didn't stop Melia.  She captured the only 5 smiles he eeked out during the hour long session. 

Less than a week later, she showed up on our doorstep with this amazing video.  Thank you so much, Melia.  It is something I will treasure always!

p.s.  If you've been thinking that it's time to get family pictures and just haven't got around to it, JUST SCHEDULE IT!  You'll be so glad you did.  If you're in the Philadelphia area, I HIGHLY recommend Melia.  Her website is.. http://www.pricelessmomentsbymelia.com/

Here's the link to the video of our photo session:

gregersonfamilyphotos

Hope

Jeff has been a pediatric dental resident at the Children's Hospital of Philadelphia (CHOP) for the last 2 years.  I've taken my kids to their ER several times over the last 6 years (RSV, Concussions, etc) and have always been pleased with the care we've received.  There is something about being there that fills your heart with hope.  In fact, CHOP's motto is "Hope lives here...right here." 

I agree with their motto...more now than ever.

Last Thursday we spent the day with the cardiomyopathy team from CHOP to follow-up on Chase's heart condition.  Many have wondered why we didn't go to CHOP to begin with.  When Chase's pediatrician 1st

heard the murmur, she told me to schedule a pediatric cardiology appointment at the facility I could get the appt the soonest.  It happened to be an office that was tied to Nemours Children's Hospital (Dupont) in Delaware.  So, when the cardiologist from that office diagnosed Chase, she called Nemours and told them I was coming.  I told her my husband worked at CHOP but she wanted to follow up with Chase the next morning so I went ahead and took him to Dupont.  They took great care of us there.  The nurses were fabulous.  Unfortunately, it didn't seem like they knew quite as much about Chase's condition because of how young he was and how severe his case already was.  After they monitored him on his medication, we told them we'd like to continue our care at CHOP.  So, they kindly accepted our request and scheduled us an appointment with one of the top Pediatric Cardiomyopathy teams in the nation.  The appointment was 6 days from the day we left the hospital and we just couldn't wait.  We had many questions already answered, but had thought of a hundred more.

The day finally came.  After several hours of testing for Chase at the CHOP cardiology dept (another EKG and Echocardiogram) we were finally able to meet with the Cardiologist (Dr. Kaufman) and her  4th year cardiac fellow.  Their team represents one of the highest rated pediatric cardiomyopathy teams in the world.  Unbelievably, they spent almost 2 hours in that room with us and answered every question.  Peace and reassurance began to take over the despair and fear that had been consuming my body for over a week.  Although Chase's diagnosis had not changed, Dr. Kaufman gave us just the news we had been craving to hear.

 

There is hope for Chase...

Some of the many things we learned from this appointment:

*Although Chase's condition is severe, he has been asymptomatic up to this point (showing no signs of heart failure) and has demonstrated no signs of developing an arrhythmia thus far.

*So far he responding well with medication and can continue to be managed with medicine (propanolol..beta blocker).

*Most sudden arrhythmia's in babies with HCM occur within the 1st year (huge sigh of relief!)

*When we move to Austin we will only be 3 hours away from another one of the top Children's Cardiomyopathy Centers in the nation located in Houston.

*As Chase grows older, the number of medical interventions and surgical procedures which can be performed (with fewer complications) increases.  We need Chase to make it to 3 or 4 years old so we'll have more options available to us for his future care.

*If Chase can respond well to therapy he can have a reasonable life expectancy with some activity restrictions.

*We live in an amazing time of medical innovation and there are treatments now available to these kiddos that didn't even exist just 15 years ago.

Jeff and I left her office with so much hope.  We felt 30 lbs lighter (if only I'd really shed 30 lbs while being there!)  The fact that there's even a chance that Chase could live for many years was music to our ears.  We are far from out of the woods, and really never will be, but at least we have hope.  That's good enough for me.

That brings me to my next topic...ALL OF YOU!  We have been so humbled and lifted by your words.  Your kind messages have brought us more hope than any doctor could give.  Jeff and I have sat together and read all of your comments one by one and have cried tears of joy as we have come to understand what true friendship and shear kindness really is.  Thank you so much for EVERYTHING you have done for us. 

Chase is a fighter.  I have no doubt about that.  He has had his own agenda since the day he was conceived without us even knowing.  He decided it was time to be born only 8 hours before my scheduled C-Section.  Laboring and delivering Chase was the most traumatic experience of my life up to that point.  He was by a landslide the most difficult baby of all 4 of my children.  He has always been so stubborn and needy. 

I wouldn't have had it any other way. 

I know now that he does have a mission.  He insists on being heard and unforgotten.  When he was an infant, the only time he didn't cry was when he was in mine or Jeff's arms.  If he hadn't been that way, it would have been easy to let him hang out in his bouncy seat, lay on the floor and just watch me as I tried to keep up on my other tasks, take care of his brother and sisters and not take the time with him that he deserved.  I'm so glad he is the way he is.

Below is a photo slideshow I made for Chase the week after he was born.  I am so blessed to be his mom. 

1 week ago, today

Chase,

The last 7 days have felt like years. One week ago, this morning, I was blessed with a new perspective on life, a better understanding that our lives and care are in the hands of a Father in heaven, and a greater love for you and my family than ever before. At times, it still feels like more than I can bear. YOU are my motivation to move on with my life. To live it fuller, deeper, to appreciate the little things more fervently.

I love you so much. I'm so grateful that I get to spend another day with you.

Love, Mom

p.s... You can do hard things

Giving Thanks

I really don't know where to begin giving thanks. There has been an overwhelming outpouring of love, service, prayers and support by so many of you. We have only known for less than a week and I am amazed by the endless acts of service and sacrifices that you have made for us.
Thank you for all the ways you've reached out. Thank you for the emails, facebook messages and texts. Thank you for letting me cry on your shoulders, for crying with me over the phone. (Don't ever hesitate to call. I may not be able to answer every time, but I appreciate you thinking of me.) You'll never know what your words of encouragement have meant to me.

Thank you for the beautiful flowers on my porch. They remind me of my most cherished friendships.
Thank you for the meals and the priesthood blessings, for fasting for Chase.

Thank you for watching my other kids, for providing them with food, clothing, shelter, and love when Jeff and I couldn't be there.

Thank you all... we love you so much. We can feel your prayers.

Thanks for the plate, Jenny. I love it!

Big Brother

Ethan's primary teacher on Sunday stopped me in the hall and asked me what was going on. She has said that Ethan mentioned something about Chase's condition. Before I began explaining it to her, I asked her what Ethan had told her. We had told Ethan very little at this point and I was unsure about how much he understood. She said their lesson for today was about obedience and prayer. Ethan immediately raised his hand and shared with the class that his little brother's heart was sick. He said he'd been praying every night that one day he would be able run with Chase.

Tears flowed from my eyes.

So tender.