Friday, November 8, 2013

A medical update

Mateo had his routine check up with the cardiologist yesterday.  We asked for prayers and a lot of people have asked how his visit with his doctor went so I wanted to update everyone.  Prayers have been answered in a positive way!  Mateo had an echo (basically an ultrasound of his heart) as well as a couple of other tests.  We spoke to his cardiologist and she gave us the most positive and the highest compliments about his health that we could have hoped for.  Mateo's heart is doing SO well.  For those that aren't very familiar in the way of medical terminology, please bear with me for a minute.  All that's really important out of this is that its good news :) 

Mateo's heart function is good.  No.  Its better than good.  Its fantastic.  He has slight tricuspid valve regurgitation but nothing that is detrimental or needs to be interfered with.  His ASD is wide open.  No venous congestion.  Low pressures and flow from top to bottom.  Everything just looks really, really good!  Folks...his O2 saturation was 99-100%..!!!!!!  This is very rare for a Fontan anatomy (just referring to the non-normal physiology that Mateo now has due to all his surgeries and the manipulation of his circulation).  The nurse kept checking and rechecking the pulse ox and thought it wasn't working right so she used a different one which read the same.  His cardiologist is very pleased.  She said that as far as HLHS patients go, Mateo has one of the best physiological outcomes and tolerance of the Fontan anatomy that she has seen.  We were able to discontinue one of his medications, leaving him only on two meds a day. 
We have come so far.  Mateo has come so far.  His O2 sats used to sit at barely 65%.  He used to have a feeding tube that had been surgically placed through his stomach.  He was in physical therapy, speech therapy and feeding therapy.  At one time, Mateo was taking 7+ meds, several times a day.  Out of the children born with this heart defect, only 50% make it to 5 years of age.  ONLY 50%. 

So Mateo is doing fantastic. But.  There's always a "but" isn't there?  The "but" is...we have lots of hope for the future, but lots to be concerned about as well.  Mateo's anatomy has been altered and with that, there are consequences.  His body does not work naturally the way its supposed to and it has been manipulated which means there are consequences.  Its true that there are not a lot of long-term statistics.  The oldest person alive with similarities to Mateo's condition is only in his early 30s.  But more and more children born with heart defects are living longer.  This is creating a demand for research.  A demand to raise those statistics.  A need to find better ways of treatment to help eliminate the side affects of this manipulated anatomy.  Mateo has had the 3 stages of "corrective" surgery.  But these surgeries are not perfect.  I have said this before and will say it again....he is not cured.  These surgeries are palliative.  They don't fix his heart, they don't cure him of his defect and they are temporary.  These surgeries buy us precious time.  They give Mateo a chance to live a somewhat normal childhood.  To hopefully grow into adulthood. 

But there are side affects to the Fontan anatomy.  One of those side affects is how it affects the liver.  Many of these children are growing up to have liver problems later on.  Liver fibroses, liver congestion, liver failure.  And according to Mateo's cardiologist...this is not an issue of if it happens...its when.  So of course early detection is key.  For his hospital, it has become routine to follow the liver and its function beginning at the age of 8 years old.
Fontan anatomy can also bring about PLE or protein losing enteropathy which is a whole host of bad news.  If interested, you can find out more about PLE here
Long-term, the Fontan can bring about vein issues like Chronic Venous Insufficiency and DVT.
But knowledge is power.  As more and more children born with a CHD are becoming adults, the experts are finding out the problems with the Fontan and trying to tweak and correct and change the outcomes.  Mateo is past the point for a lot of the changes that have been made and much of the new and up and coming advances in the surgeries.  His role in this is to be a pioneer in this heart world.  But he is thriving.  God has been so good to him and to us.  God has shown us so much mercy in this CHD world...because it can be so very scary.  So ugly.  And we thank everyone that has sent up a prayer on our behalf.  While we give the glory to God, we couldn't have done it without all of you.  Your thoughts and prayers have carried us through so many of the dark moments.  For now we are on the other side of all of this....having reached that light at the end of the tunnel...if only for a moment...we will enjoy it.  The worries about tomorrow can certainly wait.  We have a lot of life to live while we have it and we are choosing to push aside fear and instead....we're enjoying every moment.

Sunday, July 21, 2013

So here we are again, nearly a year since my last post.  Ugh.  I'm REALLY bad at this whole blogging thing!  But as the saying goes, no news is good news.  Life has been too normal to really write about any of it.  I doubt y'all want to know how much laundry I do or how many bathrooms I clean in a given day....but the last couple of months my fingers have been itching.  I'm not even sure what it is I want to get out on "paper" but my fingers are wanting to dance across the keyboard.  So here I am. 
A lot really has changed since I last wrote anything.  All normal every-day things, but life has changed again.  We no longer live in Florida.  We have moved to the Midwest...and I must say we are really enjoying it.  After being in Florida for 8 years (going on 9!) I had gotten used to the palm trees, balmy (ha! HUMID) summer (that is February through November) days and the strange wildlife.  I kind of forgot what life in the Midwest was like.  I grew up in central Wisconsin and lived there until I was 22 but after being in Florida for so long, my blood definitely has thinned out.  I never liked the winter months while living in Wisconsin but now I'm REALLY a big wimp when it comes to colder temperatures.  So we moved to Nebraska at just the right time.  We missed the long winter and came in April.  We've been enjoying the cool, crisp mornings and the hot (less humid) days.  Mateo loves all the lightening bugs and begs us to let him run outside and catch them.  The air just seems...cleaner...up here for some reason.  And while there are no palm trees, there are evergreens! And of course plenty of corn! 
We really like the base here and the area we live in.  Everyone is very friendly, Mel enjoys his job.  We've made quite a few friends at the church we now attend.  We're making a life here.  I've been able to drive out to see my parents that its a much shorter drive.  Mateo spent a week there on his own this past month.  He loves it at my mom and dad's place....but it seems he likes it better when we are there.  He really missed his dad and me and Mason. 
Mateo is doing well.  He will start Kindergarten in the fall.  I'm sure I'll have a heavy heart as I drop him off.  Its bittersweet.  Its so fun to start him off on new adventures and see him grow to be healthy, strong and so smart!  But its all coming too fast.  I hate how fast time flies.  I barely get time to enjoy "the now" because before I know it, it has become part of yesterday. 
But we found a great Christian school that we enrolled Mateo in this summer and he starts mid-August.  I'm very excited about this school.  When we first moved here, we thought we'd have Mateo go to public school.  This past June, Mateo attended a 3 week summer school program at the public school in our area.  It was a way to get Mateo used to the all-day school schedule and to become familiar with the school itself.  It was also a way for me to decide what I thought of the public school system here.  I realized that it was nice, but not for us.  Most of this decision was based on the fact that Mateo has a complex heart defect.  I wasn't happy with how things were handled and that prompted us to look elsewhere for his schooling.  We came across the Christian school, did an interview and asked several questions, took a tour and decided we loved it.  I will be sitting down with the school nurse soon to write up a plan for how things will be handled if specific situations were to come up with Mateo's health.  They seem to take it very seriously but at the same time realize that its not what defines him.  He is to be treated normal like every other boy out there unless the situation calls for intervention.
We have also had a cardiology appointment since coming here.  Yeah...I had that scheduled before we even left Florida.  I was able to have Mateo see his regular card in Florida before we left.  ALL IS WELL...heart-wise, anyway.  We got a great report.  And then we saw his new cardiologist once we  arrived in Nebraska.  The Children's hospital in Omaha is amazing!  I felt like I was around people who knew Mateo's condition well.  We had a good visit with his new card and I left feeling confident in her medical knowledge and in the way she handles HLHS patients.  He will see her again in November for a full work-up.  I'm nervous, but not sure why.  I think his heart is doing just fine, but I'm worried something else is going on.  He's been having a lot of aches and pains lately.  Several headaches and leg pain......I keep telling myself its growing pains but I can't help but worry its more serious than that......but I pray that its nothing that can't be taken care of.
Mason is doing well too.  Both the boys have adjusted well to this move.  I think we're just all happy to be back together as a family again.  Mason keeps us laughing all day long.  He copies everything Mateo does.  He understands just about everything we say to him even though he's not talking much yet.  He has a bit of a temper but he has such a loveable, cuddly side as well.  He loves to yell and laugh and be dirty....he's just an all-around little boy with a huge personality.  He loves people and has to wave and say "hi" to every stranger we pass.  He is a joy.  Mateo is a joy.  They make being a mom pretty darn easy. 
So all-in-all....again, we feel the good LORD has placed us where we need to be.  Things have once again just fallen into place.  We found a beautiful home to rent....I love this house!.....Mel enjoys his job, we found a great school and a great hospital with a wonderful team of doctors and pediatric is good.  God is good!

Wednesday, November 21, 2012

A Thanks Giving Post

Thanksgiving is tomorrow.  Every year, people are brought around a table of food, prepared with love, to remember all the blessings we are given in this life....both spiritual and physical.  There are too many blessings in my life to really name them all.  But there are the obvious ones. 
Mateo's continued health is something our whole family is very grateful for.  I know so many heart families are spending their Thanksgiving either in a hospital room with their little loved one or at the Ronald McDonald house, eating a meal so graciously donated by someone else.  Either way, they are away from family.  From one heart family to all the other heart parents, we know what you're going through and we pray for swift recoveries and that you'll all be home soon.

Our family is always thankful for all the support and love from our brothers and sisters in Christ at our local congregation.  God knew exactly where we needed to be, and when we needed to be there.  We stumbled on our local church one day, shortly after arriving in Florida.  We were out looking for a house on a listing we recieved from our realtor.  We never found that house, but we found the church home where we belonged.  We have had an over-abundance of care, concern, kindness and generosity since we set foot in the church in Brandon.  We know we are loved and while we're away from blood family year after year, we always have a spiritual family that we know we can count on.  They have been with us through every up and down since Mateo was born.  The waiting room was filled with concerned friends, laden with coffee and sweets, at every surgery Mateo had.  We recieved phone calls, cards, emails, facebook messages....all too many to count.  Our brothers and sisters went to God in prayer numerous times on our behalf...holding special prayer services for Mateo and our wonderful "drive-thru" prayer meetings.  We have been lifted up in prayer so many times by those in Christ, and God has heard. 

We've also had an abundance of support from friends in the community.  They also have prayed for us many, many times and are always quick with a text to see how we're doing.  The boys and I have had several invitations to Thanksgiving meals...everyone wanting to make sure we're not alone for the holiday.  Nearly two weeks ago, we participated in the annual Tampa Bay Heart Walk.  This is the 4th year we have participated and I think the event gets bigger every year.  There was an estimated 30,000 at the event this year!  Our little community team is such a big encouragment to me.  There are businesses that have hundreds, or maybe thousands, of participants for their company and raise tens of thousands of dollars.  Our individual team of 20 or so raised over $2500 in support of the American Heart Association.  I'm so proud of our team and feel so blessed to have so many people care about us as much as they do.  Our team doesn't consist of just those who came out to walk, but also includes all those that donated and helped spread the word.  They showed their support for us and an organization that will one day help cure, prevent or permanently repair CHDs.  I feel like my heart fills my chest with gratitude when I think of all our friends that have helped us out year after year.  I love you all so much.

I am thankful for my family in Wisconsin.  They are so far away but so close in heart.  My mom and I could chat on the phone for over an hour almost every day...we never run out of things to talk about.  She's the first one I want to call when ANYthing happens in life, good or bad.  My dad, while not much of a phone talker, is always with me in thought.  I am the way that I am because of much of what he taught me growing up.  Many of my decisions are based on some principle he taught me, which I know are also based in God.  Something I will always be grateful to my parents for is making sure that we were taught the truth.  They have definitely "trained up a child" with me and while I am trying to do the work to know God, they are the ones that set me in that direction.  

I love my sisters...and while they are going through their own trials now, I hope and pray they find their solution in Christ.  They are beautiful girls with so much to offer and during my visit last summer, I enjoyed every moment I got to spend with them.  My brother, who I don't get to talk to nearly enough, is funny and gives the best (and sometimes painful LOL) bear hugs.  He works hard for his family and also is trying to bring up his boys to know the LORD.

I have gotten to know my sister-in-law much better over the years that her and my brother have been married and I'm thankful for our relationship.  I hope that we can be closer as the years go on.  She has been a help to me by giving me great advice when I wanted it and encouragment when I desperately needed it.  She has inspired me by her diligence to grow in grace and knowledge of the Lord and has been a good example of what a Christian wife, mother and friend should look like.  One of the smartest things my brother has ever done was marry that girl!  I am really looking forward to being with them all for the upcoming holiday season.  I'm hopeful that when our family moves closer next year, we'll be able to see one another much more often and develop deeper relationships.

 I am also thankful for our most recent addition to our family...a healthy little boy we named Mason.  He is a red-headed spit-fire.  He is determined and stubborn.  He is also sweet and cuddly.  He is in to everything and can't wait to be just like his big brother.

He has such a personality.  He laughs at everything Mateo does and follows him around like a lost little puppy.  He mimics everything Mateo does too.  They have screaming matches on a daily basis...mostly just because screaming is fun.  They laugh together and play together.  So I'm also thankful for their relationship.  Mateo is SO GOOD with Mason.  There are not enough words to describe how good he is with Mason.  For a 4 year old, he is so patient and gentle, it amazes me every day.  I never knew a 4 year old and a "less than 1" year old could play so well together. And Mason ADORES Mateo.  The adoration in his eyes when he looks at Mateo is evident.  He watches him constantly and has to be near him all the time.  Its so sweet and melts my heart.
I also thank God for my husband.  Our marriage and relationship has been put through the ringer several times and we always come out of it stronger and healthier than when the trial started.  We love each other, we respect each other, and we support each other.  Mel balances out our relationship so well.  When I tend to be over-cautious, frenzied and impatient, he is thoughtful, calm and VERY patient.  We are a team and Mel has been there to keep our family afloat during some seriously scary times.  He is our rock and God has blessed me with one of the best out there.  I am blessed to be with a man that wants to know God more closely and wants to lead our family in that direction as well.  He is an amazing father who has an amazing love for his children.  
I know this list could go on and on but I'm going to end it here.  We have been given a wonderful life.  We've had our moments of trial, but even that is a blessing in disguise.  Through our trials we are able to really appreciate the good times.  Through our trials, we can bless others and comfort those who are going through something we've been through ourselves.  God tells us in James that our trials are to strengthen our faith.  Give us more endurance.  Make us complete and mature in Him.  He also tells us in 2 Corinthians that he comforts us in our trials so that we may know how to comfort others when they are enduring what we've already endured.  What a blessing.  Happy Thanksgiving!

Monday, November 12, 2012

Joy Comes With The Morning

"I hate heart disease.  I hate CHDs.  I hate HLHS.  Hate.  Hate.  Hate."  That's what was swimming around in my head this evening on the way home from dinner.  We had been having a great time together as a family, and the smallest of things completely stole my joy and left me with a bitter, twisted disgust in the pit of my stomach.  Mel has been home for a few weeks now from Korea.  We've been enjoying every second together, being able to be a whole and complete family again.  We had a fantastic dinner out with the kids and were headed home.  We had the radio on and Mateo's favorite song came on and he asked me to turn it up.  So I did and we all started singing along.  I LOVE listening to Mateo sing.  He has the sweetest little voice and he gets all the words wrong and it makes my heart smile so big, it shines.  And in the middle of that moment...feeling all shiny and happy.....I looked at Mateo's happy, sweet face and felt a stab to my heart.  Fear suddenly trickled out of my veins and into every cell of my body.  Sadness rushed in and I silently pleaded with God to let Mateo have several thousand more nights like tonight.  To just be happy.  To just sing and be happy.  To be innocent.  To be in the car with his family, singing and feeling safe and secure.  To not know another hospital bed anytime too soon.  And just as swiftly as the fear had come in, it was replaced with anger and hate.  And all I could think was "I HATE HLHS".  That it could so quickly come out of nowhere and rob me of that sweet innocent moment, watching my son just enjoy life, and leave me feeling sick to my stomach.  But its the reality of our situation.  We enjoy every second we have with our kids because we don't know if it will be our last.  If tomorrow is the day the other shoe drops.  We try not to live in fear.  We try to just enjoy the moment.  But it does catch up with us every now and the most inconvenient of times. 

I have blogged about this many times before....only because it is so very real.  It is scary.  To know that Mateo is growing up.  That he won't be my little boy forever.  That the bigger he grows, the harder it is on his heart.  And all we can do is hope and pray that his heart is strong, stays strong and holds out until......until what?  We really don't know.  Until they find a cure?  Until they find a permanent fix?  I don't know.  Just.....until.  It is hard not to fear the unknown.  Its a big, bottomless pit.  As heart parents, we just want to know that our children will be alright.  That even if the Lord does call them home too soon, that it will be swift, painless and not mean days, weeks, or months of fighting for each breath, suffering and enduring pain in a sterile white hospital room.  Its hard knowing that your child is NOT alright.  Yes, Mateo is fine and healthy and doing so wonderfully well right now.  But that is right now.  After all he's been through, he still only has half of his heart.  And its doing all the work of a whole heart.  Its bound to wear out at some point.  But when?  Next week?  Next year?  In 5 years?  10 years?  20 years?  Will there be a fix for it?  Will he live a normal adult life?  Will he even reach adulthood?  How many hiccups will there be along the way?  We KNOW there will be something to fix eventually...whether its a valve that needs replacing or a pace maker placement or an artery that needs widening.....or a million other things.  What we don't know, is if its going to be a major issue or just a bump in the road.  And so, again, I HATE HLHS. 

But then....we can always find a light in the dark if we look for it.  I so often have to turn to God's word when I feel like this.  I cannot crawl out of this pit on my own.  It threatens to swallow me whole and God's promises are the only thing I can cling to, even if I'm barely holding on...clinging to them by the tips of my fingernails. 

Tonight, I felt despair as we pulled into the driveway.  Of course, I was still smiling big and singing along with Mateo, but my inner joy was replaced by hate and despair.  And so after everyone is in bed, I turn my bible to Psalms.  There is so much hope in those pages.  Thank you LORD for including them.  I think a lot of people would be lost in their despair if Psalms hadn't existed.  How can these words NOT uplift me? 

"When I am afraid, I put my trust in you.  In God, whose word I praise, in God I trust; I shall not be afraid..." 
"Be merciful to me, O God, be merciful to me, for in you my soul takes refuge; in the shadow of your wings I will take refuge, till the storms of destruction pass by.  I cry out to God Most High, to God who fulfills his purpose for me." 
"Your steadfast love, O LORD, extends to the heavens, your faithfulness to the clouds." 
"Let all the earth fear the LORD; let all the inhabitants of the world stand in awe of him!  For he spoke, and it came to be; he commanded, and it stood firm." 
"From where he sits enthroned he looks out on all the inhabitants of the earth, he who fashions the hearts of them all and observes all their deeds.....Behold, the eye of the LORD is on those who fear him, on those who hope in his steadfast love, that he may deliver their soul from death and keep them alive in famine.  Our soul waits for the LORD; he is our help and our shield.  For our heart is glad in him because we trust in his holy name." 
"Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!" 
"Weeping may tarry for the night, but joy comes with the morning."

These words mean so much for me.  God sees us.  He sees me.  He sees Mateo.  He sees my fears, my hopes, my despair.  He loves me and He loves Mateo.  He knows what we feel.  He created me and knows me inside and out.  And he has given us hope.  Joy comes with the morning.  He is in control. 

And so the fear melts away and I can begin to breathe again.  What a feeling it is to release all those negative feelings.  Let the Lord take them away.  Cast your cares on him.  To unburden yourself and give the control over to God is a life saver.  I know this is momentary.  It will last only awhile....until something else happens to steal my joy by reminding me that I'm not in control of Mateo's future and that I don't know how it will turn out.  But that's the wonderful thing about freedom of religion.  I have a bible in every room of my house and can even read it on my Kindle in the dark, while nursing Mason back to sleep for the zillionth time at night.  Its always there for me to turn to in those moments of despair.  So tomorrow, I will get to enjoy my Tuesday with Mateo.  I get to find joy in the little things again.  I love taking him to school.  I love watching him with his friends.  I love how his 4 year old mind thinks.  The things he says and the things he does have me grinning or chuckling almost all day long.  So my advice to you tonight......find your bible.  Dust it off if its been awhile.  Open it to Psalms....or any passage you enjoy reading.  Meditate on it tonight.  And in the morning, find your joy.

Saturday, September 8, 2012

A rough update on the last 6 months

Wow...time does fly!  Apparently its been 6 months since I last updated this blog.....doesn't seem possible to me, but the dates don't lie.  Life happens and things like this blog end up taking a back seat.  Honestly, I was only using this blog to keep people updated on Mateo's heart condition and information but I have a feeling this is going to turn into a "What's Happening with the Whole Douglas Family" blog.  We've reached a steady momentum in Mateo's heart condition and there's really not much new to post.  He had a follow up appointment with Dr. Suh, his cardiologist, last June.  Weight, height, blood pressure, pulse ox, EKG, all went as routine as possible and Mateo got an "A-OK" from the doctor.  Heart function is super and no other issues have reared their ugly we go back in 6 months for a routine check up.

Can't you tell how happy he is about that?!

Mateo turned 4 years old at the end of April.  I didn't want to do a big party at our house by myself so we had his party at the zoo in Tampa.  He loved it.  The zoo did an excellent job too.  They provided a party room for us and after a little over an hour, they let everyone out into the zoo for the day.  We had an EXCELLENT cake.  It was made my Caridad Santana and I would recommend her any time.  We were approved by Icing Smiles Org. to receive a special cake, free of charge, for his birthday.  Icing Smiles is an organization that finds local bakers (either professional or in-home) that will donate their time and supplies to creating a beautiful cake for a child with a serious illness.  It is such a neat program and we were so honored that they accepted our request.  The cake turned out delicious and looked amazing!

Mateo and his birthday cake
Mateo also participated in tri-sports at the Y this spring.  He had 9 weeks (3 weeks of each) of soccer, basketball and t-ball.  He had a lot of fun.  His favorite was t-ball and he is very good at it.  I think he'll end up being a baseball superstar like his dad was in high school!

Mateo also saw his eye doctor in June and we were sent home with great news!  Mateo no longer needs to wear glasses.  His focusing issue has been resolved and while his vision isn't perfect (which it probably never will be) its not bad enough where he needs to wear glasses or patch anymore.

Mateo, Mason and myself spent 5 wonderful weeks in Wisconsin with my parents over the summer.  It was SO good to be home for that long.  My only complaint is that it wasn't long enough!  I could have stayed through the rest of the year.  It was nice having the extra help with the boys.  Mason started eating baby food while we were there.  Mateo got to play outside with reckless abandon, like boys are supposed to be able to do. 

He had sleepovers with friends, playdates with cousins, several "gator-rides" with my mom, we went to Bay Beach, bowling...etc.  No wonder he didn't want to come home!

This is farm life!

The giant slide at Bay Beach...Mateo LOVED it!

Mateo finally got to ride a Ferris wheel...his face says it all

Meeting Smokey The Bear at the Scandinavia Corn Roast Parade

He had a great time with his cousin and my parents.  He hated to leave.  We've been home for 3 weeks now and he STILL asks if we can go back to stay.  

We got home just in time for school to start. 

Mateo is attending the same school as last year.  With so many "unconstants" in his life right now, I didn't want to go and change his school on him too....not that I had wanted to.  We love his school and all the teachers there.  They do a great job and Mateo loves it there.  Plus, a lot of the kids that were in his class last year are in his class again this year.  So I didn't want to take that familiarity away from him.  He is loving school.  I want to be as involved as I can be this year, but we'll see how it works out with Mason and his schedule.  Life always revolves around the baby!

One other piece of exciting news is that Mateo was chosen to have his picture and story put on a poster that would be displayed in select Subway restaurants and Regions banks.  They will be promoting the Heart Walk put on in Tampa by the American Heart Association.  We are really excited about it, so if you see his poster out and about in Tampa, Brandon or Plant City let them know you know Mateo and feel free to purchase a heart in honor of Mateo!

A rough picture of the poster!
 On another note, Mason is growing like a weed.  He turned 8 months just a few days ago.  Its going so fast.  Less than 4 months and he'll be a year old!  Last April he was diagnosed with torticollis.  His head tilted to the right because of a weak/short neck muscle.

Notice the head tilt!
 He started physical therapy right away to work on stretching that neck muscle and building some strength to help straighten it out.  He did PT twice a week and I also had him see a chiropractor twice a week.  When we went to WI, I couldn't continue the physical therapy but he was able to continue seeing a chiropractor and she also practiced cranial sacral therapy.  Basically, she would put pressure on certain parts of his head to reshape it.  Due to Mason's torticollis, his head was a little....asymmetrical....and needed a little TLC.  She did a great job and Mason looks great! You can't really even tell there had ever been an issue.

Pretty little head  :)
Mason is into everything right now.  He is ALMOST crawling.  He can roll himself to get where he wants to go and he does some kind of scoot/shuffle that I don't even know how to describe.  But he has begun to get on his hands and knees and rock.  He doesn't quite have it yet, but I think in a week's time, he'll have the crawling thing down.

Mason is also starting to experiment more with foods.  He LOVES his avocado and he likes anything I put in his netted teether.  But he prefers any of the orange veggies...even over fruit.

Look at them baby blues!
 So the boys are doing well.  I have been going a little crazy.  The whole "single parenting" thing has proven to be very difficult and overwhelming.  But we're making it through.  I signed up for a 3 month gym membership and I can't believe how great it feels to run on that treadmill.  I hate exercising. Seriously.  But with all the stress and melt-downs I have lately, that outlet is just amazing.  I could run and run and run....unfortunately, Kidersize at the gym has closing hours, so I have to turn off the treadmill at some point :)  I am craving something that is all mine lately, so I did something I never thought I would do.  I signed up to do a run.  I must be C-R-A-Z-Y.  I hate to run and I never thought I should have to PAY someone to do it (except the gym of course).  But my good friend talked me into it since the money spent goes to a really good cause.  So I am running my first 5K ever in the Blueberry Stomp Mud Run.  Its 3 miles of muddy goodness.  3 miles, 19 obstacles and I can hardly wait.  Its going to be a blast. 

The same week I signed up to do the mud run, I also registered to do The Color Run in St Pete.  Seriously, I don't know what I'm thinking.  But I'm getting this high off of running right now, so I thought....why not?  It looks like fun.  Its not timed.  I'm not trying to prove anything.  I just want to run and have fun (seriously, I just used those two words in the same sentence...who am I??) and have it be MY thing.  Mama needs some time to herself!

So we are living life to the fullest right now and having a good time doing it.  Life sure hasn't been boring lately and it doesn't look like its going to slow down any time soon.   But that's the way us "Douglases" like it!

Thursday, March 8, 2012

Someday I hope to be Fearless

I have to say, I am really bad at keeping this blog updated.  Of course, I'm the type of person that likes to block out anything bothering me and pretend I live in a perfect little world.  Then it builds up to where I HAVE to write it all out and I guess that's where this blog comes in. 

Things are actually going very well right now.  The most recent thing/event I had been "blocking out" (ie: ignoring, pretending wasn't really happening) was that ever since Mateo's surgery, last September, he had been going into junctional rhythm.  This means his heart wasn't beating in rhythm together and that his beats per minute were going dangerously low.  Its something his cardiologist wanted to keep an eye on.  Mateo had a 24 hour holter monitor sometime last November and his beats/minute were in the high 50s.  His cardiologist said that that was "doable" but if it went into the 40s while sleeping, we would need to in, talk about placing a pacemaker.  While this is not the worst thing in the world, it would have devastated me.  In my mind, having to intervene with ANYthing including a pacemaker, is the beginning of the end.  I was told that after the 3rd surgery, we would be on "the good side" and be able to just enjoy life.  That is not my experience.  At least after the 2nd surgery I knew what to expect and what was next.  We were waiting for him to get big enough for the 3rd surgery to be performed.  That's what was next.  Now, I feel like we've been tossed out to sea and we're just waiting for the other shoe to drop.   I am not naive enough to think that now that Mateo has had that "final" planned surgery that we're whole and fixed and will never have another issue.  I KNOW there will be issues ahead that will need to be addressed.  What is scary to me is that we don't know WHAT issue it will be.....serious or easily taken care of.  We don't know what course will need to be taken to correct that it surgery or something less invasive.  So, instead of enjoying life without a care, I sit, anxious and holding my breath...always waiting for that other shoe to drop.  So the junctional rhythm issue was a big deal to me.  And putting in a pacemaker meant his heart needed help...which I am afraid will only need more help in the future and resulting in a transplant eventually.  Of course, it may never come to that...but its where my mind goes and I fear.  It may be God's plan...and I'll have to be okay with that...but that doesn't mean I don't fear.  Because if more pain and torture for Mateo is God's plan, I can make peace with that but it doesn't take away the fear of having to see my child in that state.

But back to the present......see, this is what happens when my mind wanders to "that place".  Its hard to get out and I come across all the 'what ifs', back to the present......

Mateo's cardiologist wanted to monitor the junctional rhythm.  It wasn't anything that had to be taken care of NOW....but would eventually need to be addressed if it didn't fix itself.  She had a few ideas to see what was going on.  Sometimes, after major surgery like Mateo just had, the heart needs a little time to adjust to its new anatomy and will take awhile to get back to "normal".  Or, one of his meds might need to be adjusted or quit altogether.  We took our time with figuring it all out.  She gave Mateo's heart a couple more months to adjust itself and she did some blood work in the meantime and also adjusted a medication.  Mateo had another 24 hour holtor monitor (records heart rhythms for 24 hours) last February. 

Well, last week, at Mateo's heart appointment, we got great news.  He is no longer going into junctional rhythm.  Praise God!  Apparently, his little heart just needed some time to figure itself out and its now back to least whatever is normal for Mateo.  I was so happy, I cried.  I asked her to recheck everything too because I just could not believe it.  I had spent the last 5 months letting that fear eat up my energy by ignoring that fear in the back of my mind and now its gone.  I felt so renewed!  And on top of that, Mason also had an ECHO and EKG done and his little heart is perfectly normal and healthy.  I have to say, fear had my own heart in its clutches until I heard those words...."perfectly normal".  Seeing Mason with the EKG octopus all over his little chest was hard to watch.  I just did not want to go through all this with another child.  Mateo is worth it all and Mason would have been also, but its so very hard on a mother's heart and mind.  So it was the BEST. NEWS. EVER!

In other news, Mateo still loves school.  They have school/class pictures coming up.  The spring pageant is also in the near future.  I'm still enjoying being a mom of a school kid.  I love to take advantage of every opportunity to help out. 

Mateo also is enjoying being the Big Brother.  He loves and hugs on Mason all the time.  Mason cries and Mateo thinks he has to be there to hold his hand or rub his head, saying all the time, "Don't worry Mason.  Mateo's here.  Big Brother is here.  Don't cry.".  It really is the sweetest thing.  And he is a big help to me, running around bringing me diapers, wipes and burp cloths.

Mason is just over 2 months and is finally growing out of that "cry-all-the-time" stage.  He's beginning to be a lot of fun with all the smiles, coos and arm flailing he does.

We are looking forward to a fun summer with summer camps, Vacation Bible School, gymnastics, swimming and whatever else we can fit into our schedule.  We're even hoping to visit Meemaw and Papa in Wisconsin this summer. 

Mateo's doctor gave us a 4 month vacation from appointments, so we're praying that all stays well.  We look forward to making the best of our last year in Florida!

Tuesday, November 22, 2011

The Latest Happenings....

It always surprises me how much things can change in such a short amount of time.  Take this pregnancy (or any pregnancy!) for example.  In 9 short months, another living human being is grown, with 10 fingers and 10 toes, a heart and all major always just blows me away.  And of course how quickly the mother's body changes in those 9 months is a mystery to me.  Between all the stretching and the hormone craze, its amazing that the mother ever gets back to normal once the baby is born!  Despite all the difficulties I have had with this pregnancy though, it seems to have really gone by fast.  I'm sure it has something to do with not having time to focus and think about this pregnancy.  With Mateo's medical issues and milestones, I haven't given much thought to what's been going on with myself.  And he has had many milestones in just a few months!

Sunday night, he slept in his own REAL big boy bed.  He was in a crib-converted-to-a-toddler-bed, which we had called a big boy bed when he graduated from the crib part.  But now, since we will be needing the crib again soon, Mateo has his own twin size bed.  I had ordered it online and it is one of those pieces of furniture you get to put together yourself, but its definitely a bigger bed.  And I was a little sad putting it together.  Every time Mateo graduates to another phase, I feel sad.  I just can't help it.  I just miss my little, little boy.  He is growing SO FAST and I cannot do a thing to slow it down.  I have always been the kind of person that realizes how fast time flies and it always makes me sad to see it slipping away.  I truely believe in making every moment matter.

Another big milestone for Mateo is that he started preschool last week.  I thought I would have the worst time with dropping him off.  I thought he'd be a little scared or insecure and cry and not want me to leave.....boy, was I wrong!  He walked into the classroom with me and as soon as he saw all the things to play with and touch, I was barely even noticed walking out of the room.  When I came to pick him up, he talked non-stop and was as dirty as can be, but grinning from ear to ear.  I KNOW he loved it.  On Friday, I took him to school to attend his Thanksgiving Feast (normally, he only attends Tuesday/Thursdays).  We walked through the door into the hallway to go to his classroom and he took off at a good run, down the hall and disappeared into his room....leaving me to waddle down the hall by myself.  The Thanksgiving Feast was so fun.  Mateo walked into the eating hall with his classmates, all dressed up as pilgrims.  Cutest. Things. Ever.  I am having so much fun with this parenting stuff.  I'm excited to attend all his little programs (Christmas Pageant is only a few weeks away!) and take pictures and videos.  I'm excited to pack him lunch for Lunch Bunch on Thursdays.  I'm excited to fill out all his registration forms and see what kind of craft he brings home each day.  I'm excited to bring snack once a month!  What a blessing children are to their parents!

As sad as I am that Mateo is growing up so fast, I am SO happy we started him in preschool. This gives him a chance to get a weekly schedule established.  So much will be changing at the start of 2012, and I wanted him to have something he can count on.  His little world is about to be rocked!  I have my c-section scheduled for January 5th at noon.  I have a feeling this baby is going to be wild.  Despite Mateo's scary start in this world, he was an easy baby.  His temperament and personality were so easy to handle.  I don't suppose I can get THAT lucky two times in a row.  Then a month after the baby is born, Mel leaves for Korea for an extended (VERY extended!) amount of time.  I'm not sure how Mateo will handle that.  My mom will be here for quite a while after Mel leaves, so I'm very grateful for that.  I just pray Mateo adjusts well.

We are looking forward to all the holidays here.  Thanksgiving is this week...and we have so much to be grateful for.  I suppose we have much to give thanks for EVERY year, but this year seems special in particular.  For one, Mateo made it through his heart surgery and recovery very well.  We had some rough days, but looking at the overall picture, I know it could have been much worse.  He has had all the opportunities that a 3 year old should have.....such as starting school and sleeping in a big boy bed :)  We are grateful that this 2nd baby we're about to have is, by all appearances, healthy and heart-healthy....a big deal!  I am especially thankful to be done with the 1st and 2nd trimester "morning" sickness.  We are grateful for all the friends and spiritual family we have here in FL, who have helped us and been there for us when we've needed a hand.  And I know I could list much more....but those are the bigger things that have happened this year. 

Christmas is not far away now.  I get to decorate the house this week.  I'm always excited to blast Christmas music from the TV, drink hot chocolate and put up all the Christmas decorations.  Everyone on the block is out putting up Christmas lights and its a little easier to get into the holiday spirit, even when its still 80+ degrees and humid outside.  However, I really am wishing for some cooler temperatures!  While I don't miss Wisconsin winters, I DO miss that little chill in the air that lets you know Santa is on his way!