Random Ramblings

Another one of those posts with a few random thoughts: 

• Forgot my computer at home today, had to turn around and get it – nice start to the day

• Got into the office and the computer I went back to get wouldn’t turn on – tech guy got on the phone with IBM – couldn’t figure it out, they need to ship it back – made for a pretty non-productive morning.

• Max has a four chamber heart!!  There are still some risks in his recovery, but all evidence points to walking away from Boston with a fixed heart.  One thing I’ve learned from these last few months is to absolutely not  accept when doctors give you bad news – Max’s mom’s search for an answer and a second/third/fourth opinion saved his life.  Can you imagine one day being told that your child’s heart is not able to be fixed – so your only option is to do a risky temporary fix to buy time to search for an answer and then a few difficult months later, walk out of the hospital with a healthy an almost certain future?  What an awesome day!!  Nikki (and my wife Carrie for that matter in our Gracie’s case) is just as much of a hero as the surgeon that performed the work.  Proof that you don’t have to take “No” for an answer and the power of positive energy.  They knew Max was going to make it and, guess what, he is… Positive breeds positive.  I pray that someday soon we can say the same for our Gracie.  

• I really need to fix the broken knob in the shower – Carrie didn’t like my vice grips fix idea   -- and that awkward blind searching with one hand while trying to keep the shampoo out of my eyes to turn the knob 1/8^th of an inch because the water suddenly is too cold to be comfortable is getting old.

• Milo is coming back home.  He has wore out his welcome at my mom’s  place – We are at a loss – not sure what to do with him.  He is such a sweet dog and on March 3^rd will be 9 years old.  Mastiffs don’t live much longer than that.  I was pretty sure that we could make it work at my mom’s place, but the stubborn old mutt gets separation anxiety and goes into their basement and marks.  I don’t get it – he’s completely trained.  Just nervous and as he gets old, it’s getting worse.  I’m upset because I know he loves it at my mom’s and loves living with his sister – but what can we do?  Not sure how we’ll manage in our little house with three dogs, Hurricane Lylli, and all of the extra equipment that comes with having Gracie home.  That little living room is going to be crowded.  Main goal before he arrives is to work with my dad to create a Milo proof gate for the “dog room” in the basement.  If any of you have seen some of my earlier posts, this is going to be no small feat.  Oh well, he is our dog –I guess I’m going to have to make a point of doing something every day to make him completely exhausted – because a sleeping mastiff, can’t get into trouble.  If Big Meat was a cat, this will be his ninth and final life – If something happens where Milo is aggressive in the least, I’m afraid that it will be time to take that fatal trip to the vet for the third time in the past year.

• The one time in my past that I kind of considered myself a runner (OK a 9 minute pace in a 10 mile race is not considered a runner in most circles, but to me, it’s my good ‘ol days)  – Bottom line is, once I could run a little ways, I sort of enjoyed it and I really shed the lbs – not to mention could eat and drink pretty much what I wanted because I ran 5 miles a day 5 days a week – and no I’m not talking about the days when I ran at the back of the pack with my nemesis, as Chimo calls him (the 70 year old guy with the goofy gate that I was neck and neck with in several 5k races in one of my more recent attempts at running).  This year I have vowed to shed 50 lbs – I’m hoping that I can push past the sore joints  as a result of playing college football and carrying around all of this weight – not to mention the inevitable shin splints to allow me to try to become a “runner” again.  I was thinking that I would try to do the Twin Cities 10 mile in the fall since the one I did in 2009 was more of a walk with my eye issues, etc – it truly was one of the most humiliating days of my life – That said, my good friend Dave was over for dinner last week (thank you Dave and Sharon for the wonderful meal).   He proposed that we run the Twin Cities – of course I thought he was talking the 10 mile – so said, absolutely – I figured what a great way to further motivate me to lose weight and to keep running – the idea of running the 10 mile with one of my best friends and hopefully redeem myself.  Of course, I forgot the fact that he married into the family of the crazy marine that runs the TC marathon in full gear, carrying the American and Marine flag, with an 80 lb pack on his back (love you Steve if you’re reading this – but you have to admit, to us mere humans – that’s just crazy!).  Dave was talking about the full marathon!!! – I know I’ve talked about it (ok I’ll admit blabbed without following through) in the past,  but really if I’m ever going to achieve it in my lifetime. I think now’s the time – Considering, the mailbox would probably require two water breaks, a snack, and a bathroom break today, I would have my work cut out for me – I know that we’ve got some very scary times this year and it may be just what I need to work through the fear and stress instead of turning to rum and fast food for comfort.  Man would I love to say that I ran a marathon (even though I really do hate running).  More to follow on that…

HAVE A GREAT WEEKEND!!

Mighty Max and his super hero cape - May he have super hero strength today

I’m a mess today.  We met a wonderful little boy named Max while we were in the hospital (Actually Carrie met his mom on an internet site before Gracie was even born – both looking for answers).   Max is around 6 months old and has some similarities to Gracie.  Max also has Down syndrome as well as a major heart issue.  It’s not super rare to have Down syndrome and there are many instances where typical children have one side of their heart that is not adequate, but to have a combination of these two is extremely rare and very serious because kids with Down syndrome don’t traditionally do well when treated the way they would treat a typical kid.  That said, Gracie’s first surgery was the Norwood Procedure – the first of the three phase surgeries that they would do to fix her heart if she were a typical kid.  The Down syndrome adds complexity – so much that the outcome is usually fatal.  There are many common heart issues that kids with Down syndrome are prone to – Gracie and Max don’t have the exact same issues, but the issues that they do have with their hearts are not the common ones.  They are very rare and very serious and we both, along the way, have been given very little chance of our babies making it.  Kids with Ds and hearts like these typically have not survived – I told the surgeon that did Gracie’s heart surgery when they presented the risks to us  – “she will survive and someday you can write a paper about it”. 

 

OK, back to Max. Max had the band surgery that we were first told that Gracie would have – he had it a short time before she was born.  We followed each other around the cardiac floor of Children’s hospital in Minneapolis.  Carrie and his mom, Nikki bonded only as two mothers with babies like this could and the last couple of days there, the kids rooms were right next to each other.  Gracie got to go home for Christmas to get strong and prepare for her next surgery in the not too distant future.  A few days after we left, Max was flown to Boston to prepare for an operation done by the world renowned Dr Pedro Del Nido.  This surgery will result in Max having a four chamber heart – Kids that have had this procedure are very rare – it’s a very small group.   I just know he is going to be OK and I pray that Gracie will be able to soon follow them to Boston and also have a successful 4 chamber heart surgery.  This is not your standard removing of the tonsils – this is some cutting edge trail-blazing stuff that only this Dr is capable of at this point.  I find myself remembering how I felt when they wheeled her back the day of her open heart surgery – I cannot stop thinking about this little boy and his family.   I just know that these two are here for a reason and met for a reason and are destined for great things.  I pray that Dr Del Nido works as perfect today as he ever has and that we can look back at this time as a time that made everyone stronger and what was needed to happen so Max can live the long life that he is destined to have.  And I pray that in the not too distant future, Gracie will too be part of the four chamber heart club

 

The procedure has just started as I type this – please keep Max in your thoughts

 

 

Happy New Year!!!!

If they weren’t frozen to the ground, I guarantee I would have seen tumbleweeds blowing across the road on my drive into work.  Cube-land is vacant today on New Year’s Eve with the exception of those of us that are not full time employees.  It’s hard for me to not be a little resentful on days like today since I was asked to come in as a consultant only for a short time – that was over 2 years ago.  I can’t complain though because I do like this gig and there are many without jobs these days.

 

I haven’t been very good at updating this blog lately – Once again, I’ve gotten to a point where I feel like I need to create some profound posts to accurately recap my last couple of months.  I’ve decided against it since my wife has done such  a great job tracking our time lately on Gracie’s Caring Bridge site. 

 

Today is the last day of 2010, I thought I would write a couple thoughts about this year and the next. 

 

In 2010 we sadly lost Buck and Bodey.  I also had some issues with my eye that really forced me to think about my health and mortality, but the biggest event of the year has been the arrival of our daughter Gracie.  In many ways, it’s been the scariest year of my life, but at the same time, it’s been a very important and positive year.  Everything that has happened has really forced me to rethink about things in this life that are important.  I am nowhere near the same man that I was on 1/1/10.

 

2011 is also going to be a big year -- We fully understand that the first heart surgery that Gracie went through (and got through with flying colors) was just a temporary fix.  During this next year, we will be researching and asking a lot of questions to figure out what the next steps will be for her.  This spring, she will need to undergo another heart surgery.  At this point, we don’t know what or even where it will be for that matter (today, the options look to be either Minneapolis or Boston).  I look at Gracie every day and I truly feel that she is here for a much bigger reason.  It’s amazing to hear how much our tiny little newborn daughter has effected so many people.   So many times already, during the pregnancy as well has well as the first 40 days of her life, she has been doubted and every single time, she defies the odds.  I wish I could be half the fighter that this little girl is.  For the last couple days of her hospital stay, we stayed in the room next door to Mighty Max and his family.  They are from Fargo, ND.  Max also has Ds and an unbalanced heart.  Carrie and this little boy’s mom met on the internet even before Gracie was born – both searching for answers about their babies’ heart issues.  There are definitely differences between their hearts, but there are also similarities.  A few days after we left, Max flew to Children’s hospital in Boston – the plan is on Monday he will undergo a procedure that will hopefully fix his heart.  I can’t stop thinking about that little boy and continue to send all of them positive energy (I ask that you do the same - http://www.caringbridge.org/visit/maxgerman ).  I truly believe that these two kids have been brought together for a reason.  They are both paving the way for babies with down syndrome and unbalanced heart issues.  I cannot wait for the day where we can all get together so they can play after all of this is behind us.

 

2011 is also the year that I have vowed to lose (at least) 50 lbs.  I am up to around $50 per lb in pledges – money raised will benefit the Down syndrome Association of MN and the Ronald McDonald House.  I am using this as an opportunity to raise money for two organizations that are important to me, but my motivation for this effort is for a much different reason.  I need to get healthy so I can get old with my wife and watch my girls grow up – Another thing that I’ve been thinking about lately is –  How, when my daughter was born with a bad heart and has to go through so much just for a chance at a life, could I do things and live in such a way that ruins my perfectly good heart?  If this is not enough to motivate me, nothing will be.  So, wish me luck – I’m not quite sure how I’m going to do it yet, but it all starts Monday…

 

Anyway – I plan on posting a lot more in the coming year to track my girls as well as my weight loss journey.

 

Happy New Year – I wish you the best possible 2011!!!

 

 

Merry Christmas!

Merry Christmas! Love, Gracie

Baby Gracie Montage

Make video montages at www.OneTrueMedia.com

Gracie is Gracie

I follow many blogs written by parents of kids with Down syndrome.  Time and time again, I see stories about how in the beginning they were afraid – probably because you just don’t know what it’s all about yet and all you know are all of the generalizations that are out there about people with Ds.  Gracie is two weeks old (as of yesterday) and I already can tell you that Gracie is Gracie and I can’t put her into a category just because she was born with Trisomy 21.  Everybody told us prior to the surgery – typical  kids take this long for this and that –  she got off the bypass machine no problem, she barely swelled up post surgery, they sewed up her chest less than 24 hours after surgery, she’s already off of the ventilator – she’s making great strides in learning to eat --  all things we were assured would most likely take some time (and everything had that “for a typical kid” asterisks by it).   I’ve heard a very highly respected intensive care doctor say to a large group of doctors on their morning rounds (when he didn’t know I was listening) – “This is as smooth of a recovery from a single chamber heart surgery that I’ve seen”.  Gracie had open heart surgery last Thursday afternoon,  and pretty much every step of the way so far, she has been ahead of schedule.  She’s a fighter, our amazing Gracie – I said a long time ago that our road will be a bumpy one, and I’m not pretending that it won’t be, but right now, I’ve got no doubt that this little girl is going to change some opinions. 

 

A letter to Carrie before Gracie arrived

Gracie is here and I was working on an entry for over an hour last night when I lost everything I had written -- she is 10 days old today and I am finding myself at a loss for words -- most likely because I'm searching for something profound to say and don't want to miss anything -- Carrie has been doing a great job at updating Gracie's caringbridge site - When I find the time where I can think, I will recap our last 10 days -- she is in surgery as I type this and its all out of my hands -- I pray that things work out the way we want them to.  I wanted to share a note I wrote to Carrie prior to Gracie's arrival - She is far MORE private and may not like that I passed it along, but I am unbelievably proud of my amazing wife -- she is way stronger than she thinks she is and I want to share how amazing she is with the world.  Even as I sit here scared as I've ever been, I can't help but be so thankful for my amazing life, family, and network of support.

 

Carrie --

 

You don't need to be a marriage counselor to see how different we are  – I'll admit there are times when I wonder how in the world we ended up together, but then, usually very soon after that,  something happens that points out to me without a doubt why.  Yes, we are different in a lot of ways – as with all couples, some of those things we just need to learn to deal with.  But there are also many ways we differ that are a wonderful compliment to each other.  I am sorry that I can be a pain to live with – I know I can make things miserable and can be impossible to please.  I do not deserve to have you as my wife, but thank God everyday that I do.  Speaking of God – while I've work through the arrival of Grace in my head,  as we've been presented with her chances of making it, etc, I've naturally gone to God and asked for forgiveness for everything that I've ever done wrong  -- It's a sad thing that a person waits until moments like this to realize that they can/should be a better person.  I am especially sorry for times that I have made you feel less than the most beautiful, intelligent, strong, important person in this world to me.  Having you, Lylli, and Gracie in my life have forced me to reflect on who I am as a man and I promise to try to make all three of you proud of me as time goes by.   I can't thank you enough for everything that you do for all of us – you are the glue that keeps our family together and I do not tell you that enough – If I could take all of the bad off of your shoulders to carry myself, I would in a heartbeat.  I give you a hard time about never knowing what to ask for on your birthday, etc – I joked to you the other day that I could think of 10 things for $1000 right now that I want – a person could learn a lesson from you – you know what life is about, it's not about a new toy, it's about being happy with what you have and making the best of it – I'll admit that I envy this about you ( this doesn't mean I don't want to remodel our place, some land in Balsam, and a late 60's bronco someday – but would you expect anything less?)    Since we were told about Grace's possible challenges, you, without complaints have done everything you could to give her the best chance.  You take care of her and all of us without complaining – you are such an amazing woman.  It seems like she'll be here any minute now and I just wanted to let you know how proud I am that you are my wife.  No matter what happens, you've done everything you could do – I know the added stress of our days to come could put a strain on some marriages – I vow to do my best to deal with this in a positive way and I just know that someday we'll look back on this as a time where we were very scared, but also as a time that helped us to better appreciate our marriage, our children, family, friends and we have little Gracie to thank for that.

 

I'll love you until I can't love anymore

– Rich