Category Archives: Dancing

Our boy can BLOW!

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First – the exciting news, Isaac can BLOW! With the trach Isaac obviously breathes through his neck – making the blowing of bubbles and party blowers impossible. We have been trying to train him to blow through his mouth, again utilizing that fancy airway that has been created for him. He hasn’t quite gotten it, until this weekend. He noticed all of the other kids blowing on their party favors at a party and with sheer Isaac determination set out to do it too! He came home blowing away :) Just one more sign that maybe he really is ready to lose the trach.
This week has been declared Global Tracheostomy Awareness Week, Isaac is sporting his “Trachin it one day at a time” t shirt today to honor it :) I think it is pretty important to recognize the trach, as it definitely saved our Isaac’s life. Before Isaac got his trach we had never met another person with one. Our impression was that it was disabling – we were so wrong. It is hard to get upset with people who are shocked to see Isaac do the things he does with a trach, because we never imagined it was possible. We now know so many trachie kiddos, and their families. They are trached for a variety of reasons, and use a variety of equipment – but they are all amazing, resilient kids.
Our trachie boy runs, climbs, goes to gym class, swims, dances, sings, and BLOWS. There are no limits to what he can do – and that is important for everyone to know. Isaac’s trach doesn’t limit him – it empowers him.
It is all he has ever known. We remember the sick baby we had before the trach – the baby who slept all of the time because being awake AND breathing was too much work. We remember the baby with tubes, so many tubes that the first time we saw his whole face was the day he got his trach. We went from fear of the unknown to utter elation – we knew instantly that this was the best decision we could make for him. Learning to care for a baby with a trach was not easy, and bringing him home was scary – but we survived. The more we relaxed the more we could see what this kid can do!
Isaac has grown by leaps and bounds these past 4 years – his progress never ceases to amaze us. He is, of course, so much more than a trachie kid – but the trach is such an important part of who he is, and why he is so well known and loved.

life is ………. normal!

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Our lives with Isaac have never, ever been this “normal”. We have no catastrophes in sight, no major illness, no additional tubage coming out of our boy…. we seem to have lived so much of the past 4 and a half years in crisis mode. Even our travel to Minnesota at this point is incredibly routine and planned. Sometimes I sit back and marvel at how good it feels to be normal.
In Isaac’s normal life there is still a lot of extraordinary…… this normal child breathes through a hole in his neck and eats through a hole in his stomach. He sleeps in the living room, as he has nursing overnight and quite a bit of equipment by his bed (oxygen concentrator, trach humidifier, suction machine, feeding pump) and having him in a corner of our living room is just easier for all of us.
In the middle of all of this we have a little boy who can’t stop dancing – we often catch him in front of the dishwasher watching his reflection as he dances. He sings, and sings and sings. His rendition of “Twinkle Twinkle Little Star” is beautiful :) He runs frantically when the ice cream man comes through, and can’t wait to go line up and get his treat – they last a week and we usually end up throwing them out – but he goes out everytime because it is such a joy to see!
On Tuesday nights we join a few other families at a local ice cream shop for dinner and fun – oh how he loves these nights. He marches in and goes straight to his friends, and often ends up dancing :) He loves his friends, and they are so wonderful with him.
Isaac continues to teach us amazing lessons, and just how lovely normal can be!

anniversaries!

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Last week several important anniversaries took place in Isaac’s world. They are both very important anniversaries……

On March 12th, Isaac’s “trachiversary” passed – this is the day that he received his trach in 2009! Up until that day we had watched his ability to breathe get worse and worse, our baby was exhausted and unable to keep up with the work it required to simply BREATHE. We were told that the trach was a strong possibility, then told it was a definite – but we were still not ready to give in. On March 11th one of Isaac’s nurses called me at work and essentially said enough is enough. She explained to me that it was inevitable and our bigger goal should be to avoid an emergency tracheotomy – which could result in more severe consequences. We were scared, this was the most devestating decision we have had to make for Isaac – it was the one we knew we had to make, but it was so severe and life changing.

When I saw Isaac after his trach surgery I cried, not sad tears this time. I cried because my baby looked more at ease than he had for a long time. I cried because we had known him for 4 months, but never seen his entire face – there was always a tube and tape somewhere, and on this night we were finally seeing ALL of him. I cried because I knew, instantly, that we had made the best decision. Life with a trached 4 year old is not easy – it is a constant source of infection (it’s like a little petri dish!), it can become blocked at anytime (requiring an emergency trach change), and it makes him “different”. However, he is alive – and I think that’s a pretty good trade!

The second anniversary took place on March 17th. One year ago, on St. Patrick’s Day, Isaac was discharged from the hospital after a 6 week stay to repair his broken esophagus and lung. It was at times a scary stay, and with an infant in two it was definitely a long stay. Since that discharge ONE YEAR AGO Isaac has not been hospitalized for any illness – only routine procedures!! In his 4 years this has never happened, he has never gone more than 6 months without a sick hospital stay.

We kept this impending anniversary to ourselves – just so Isaac wouldn’t get any ideas!!

Isaac is in an amazing place, one that we have not ever seen. We have a little boy who talks nonstop, when he runs out of things to talk about he sings, when he runs out of songs to sing he bangs a drum. While doing all of this he dances – and dances, and dances. Could he be feeling the same joy about a normal life that we are??

Tomorrow Isaac, mama and his Goo Goo (grandma) fly to Minnesota for an esophageal dilation. Of course while we are there we will see Isaac’s girlfriend – Ireland. These two have a connection that you don’t often see in kids, they are so affectionate and loving towards each other – again, they both seem to have a deeper understanding of love and affection after all they have been through. We are planning a photoshoot with the wonderful photographer who volunteers his time to the Ronald McDonald House (Jim Bovin) – he takes beautiful pictures and we can’t wait to share our lovebirds pictures with all of you :)

Boy band saves the day??

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I’m pretty sure I’ve said before that the first maternal/fetal specialist to look at Isaac during an ultrasound at 21 weeks suggested that we terminate the pregnancy. He did this after first telling me “this is bad”. We, of course, opted not to terminate (that’s obvious at this point!), but it made that time in our lives that much scarier. If the doctor who specializes in broken babies suggests termination – it must be bad, right?
We spent a few weeks telling ourselves everything would be fine, but I’m not sure how much Greg or I truly believed that. We did research, there were tons of babies that survived with Isaac’s birth defect, and much, much worse. It was just hard not to go back to that original doctor and his very severe prognosis.
Within a few weeks of that appointment I had tickets to see my all time favorite band in concert – New Kid’s on the Block (now the grown up edition – NKOTB). I LOVED this band as a teenager, and I mean love. When we got tickets to the show I was over the moon, but had not been feeling too happy about anything in the weeks leading up to it.
I was about 24 weeks pregnant the night of the concert, I had never felt Isaac kick – a side effect of carrying an EA baby is way too much amniotic fluid, he didn’t swallow any –so he had tons of swimming room, eliminating kicking opportunities. As the show started I felt him – my Isaac was dancing his heart out (okay, he was probably scared to death, but I like to think he was dancing!). He kicked for the first 10 minutes or so of the show – and I couldn’t tell you one thing that happened other than that. I didn’t care that my heartthrobs were on stage, I KNEW my baby was okay and would be okay. It was an amazing, zen moment for me. I don’t know why a kicking baby at a NKOTB concert was the deciding factor me, I just know that it was. I left that night ready to take on anything Isaac brought my way – and bring it he did!
Shortly after this I was placed on bed rest at home. In order to check on Isaac every morning I would put headphones on my belly and play him some NKOTB, and he would kick (maybe running away, that’s up for interpretation). I loved feeling him moving. When we both had enough I would pop in a nice, quiet acoustic CD (of course, performed by a member of NKOTB – Danny Wood) and he would calm down. We did this every day, until he threw me the next challenge :)
Eventually, a bit sooner than planned – Isaac was born. We all know most of the story from there. What’s important to take from this for me is the fact that music now plays such a huge role in Isaac’s life. I’m not sure if there is a connection to our first concert together and all of the in utero music, but I’d like to think so!
Isaac sings and dances with reckless abandon… we catch him dancing with his reflection in the dishwasher, dancing to make his brother laugh, singing when he doesn’t even realize we’re paying attention. I still find it awesome to ride in the car and hear him singing along to the Fresh Beat Band in the backseat – he knows all of the words! The fact that he sings and dances with such a lack of inhibition, after all we have put him through, is remarkable.
My son is awesome – this I’ve always known. His lack of inhibition and love of fun still astound me.
And, in the end – I have to thank my favorite boy banders (NKOTB) for showing me WE would be okay.

don’t jinx it!

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Like most inner circles, medical mamas and medical professionals it seems have a “rule” This rule is to not ever say something out loud like “he’s been healthy for such a long time” or “we seem to finally be past the worst of it”. The last time I had a coworker ask me how Isaac was, I responded “great, hasn’t been sick all winter”….. oops. Literally 24 hours later we were at the doctor being diagnosed with aspiration pnuemonia. We find ourselves tiptoeing around, and not sharing happy things until they have passed and the fear of jinxing them is gone.
That being said, Isaac was acting sick again Friday – breathing fast, kind of quiet, typical Isaac getting sick. At the very last minute (literally) we went to see Dr. Carroll (thank God her office is 5 minutes from our house – divine intervention??). As we pulled into her parking lot his breathing slowed and his color was normal – seriously. Dr. Carroll came in and he went one step further by taking my phone and typing I-S-A-A-C on the very small screen. She listened to his chest and thought he sounded great (of course!) and after discussing the proper protocal nurses may want to follow with me when I call with an “emergency” at the end of the day (“Kim, have you taken your xanax” will be the new protocal!) we laughed and left. Isaac took it another step by dancing the whole way home.
This weekend his trach secretions have been green, not a color we like. Today he was more tired and his lungs sound junky. Really? We did a trach change, he threw up (another “Oh, Isaac”) and we did a neb. This resulted in a little bit more ick in the lungs and a discussion as to whether or not to start antibiotics (jury is still out on that one). Of course, since then he has been playing and laughing and talking. Oh boy. When do we stop panicking with every sick? How do we know what is normal and what to jump on top of fast? I’m leaning towards him just being sick – for the past week or so. I hear that is “normal” :) Since we are sharing some of the same symptoms I think I may be onto something…. but this is the continuing issue for us – when to panic.
We have had the best winter yet for Isaac. What I didn’t mention earlier is that I told Dr. Carroll that in a few weeks we will be celebrating one year of no hospital stays for being sick – he’s only been in for procedures. This is a HUGE accomplishment for Isaac, as I’m pretty sure before that we never went 4 months! As soon as I said it I wanted to suck it back in – what was I thinking? Even if he got admitted tomorrow, almost a year is pretty big as well. I’m not saying the magic date, that would be a serious jinx.
Even sick for the past few weeks we have been amazed by this kid. He is talking nonstop (be careful what you say around Isaac now), singing is a normal occurance, and dancing is of course a favorite.
This week mama will watch him obsessively for signs of anything worse than a normal sick, and eventually we’ll learn how to know the difference!

the things you can learn in the shower!

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First of all, technically trachs and showers don’t mix, but we’ve always proven to be big time trach rule breakers! Last week Isaac found mama in the shower, and decided he’d like to try one too…. of course now I can’t take a shower by myself! I wouldn’t normally share our shower habits with the public, but there is so much to it that I think is important to share.

Isaac LOVES the shower, and he gets braver and braver with each one he invades. He’s gone from sticking in a two to letting water hit his belly. We are very careful to protect the trach, so I’m not sure how much braver we’ll let him be :)

Tonight he kept begging to stay in longer, and had a few tricks up his sleeve to convince me. He started by WRITING I-S-A-A-C on the door of the shower!! Okay, so his A was a little off, but it was absolutely amazing to see. When mama started trying to end the shower again he spun around and pointed to the tile on the wall and said “mama, square – 4 sides”! Holy cow, who taught this kid how to talk! Before the end of the shower he had grabbed each of my hands and planted a kiss on them :)

He eventually ran out of tricks, and we got him dried off and dressed. I watched his face tonight during his special shower, between his big eyes and beautiful smile I knew the benefits way outweighed the risks. My son’s smile can speak a million words…. Even with no words, he speaks. His eyes and smiles speak volumes, he clearly has already achieved a lifetime of experience in just his first 4 years and when you least expect it you can see it in even the briefest glance.

Isaac’s light seems to just shine brighter and brighter. This weekend he danced, he talked (and talked and talked), he gave a million and 5 kisses and he loved us all up. A year ago we were parked in the hospital, watching his leaking esophagus and holey lung with baited breathe…. life is so very good right now!

confirmation

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Sometimes that’s just what we need…. a little confirmation. The last time Isaac had a recurrent sick was when he had a leaking esophagus and holey lung – not an experience we want to repeat. With his recent sicks we all (meaning me, his dad and his favorite pediatrician!) started to get worried.
We decided to get Isaac in for an esophagram – a way to check for leaks. The good news is – there are still no leaks in his esophagus!! There have been some sleepless nights this week as we have all thought about this.
As we keep thinking about it we are leaning more and more towards Isaac just having aspiration events – something we knew could happen as his airway was manipulated. Not the best news, but certainly NOT the worst!
In light of all of this, Isaac has continued to remind us that he is still the most amazing 4 year old in the world. Yesterday I called him I,I – his chosen name for himself. He responded by telling me “No, I-S-A-A-C”! When this kid isn’t kissing us he is dancing, when he is not dancing he is singing…. he is just so happy and resilient. Over the past week we have had numerous dance parties, lots of singing in the car, some serious spelling, and lots of laughing….. it is therapeutic to be around Isaac.
For now we enjoy life – through Isaac’s eyes it is so much more enjoyable!

the good, the bad and the meaning of it all!

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First the good – I got to take Isaac, his big sister (Talia), his favorite cousin (Brooklyn) and his grandma to the Yo Gabba Gabba Live concert Friday night – what a fun night! Isaac was a bit sleepy, but perked up when he saw his favorite guy, Plex hit the stage. We danced and sang our hearts out. We even snuck to the front of the stage and had a blast throwing confetti (when you’re 4 it doesn’t get much better than confetti!).
It is during times like this that I see (again) just what an amazing child Isaac is. I think because of all he has been through he enjoys life more. He finds excitement in things that not everyone does and you can see it in his eyes. When you’re near him you pick up on his excitement and find yourself getting more excited about little things. This kid has spent more time in the hospital than any child should, and it has given him the gift of enjoying things on a level most of us do not. It is so easy to get wrapped up in negatives, and complain – but Isaac doesn’t. He finds every single bright side there is, and he makes sure we all find it with him.
So the show took on new meaning, because of Isaac – what an amazing, fun, NORMAL experience for us to all have together. Sneaking to the front was the icing on the cake for all of us, and not something this rule following mama would have done pre-Isaac…. but now it is oh so easy to break the rules for just a little bit more fun :)
Now – the bad – Isaac has pneumonia AGAIN. Although he hasn’t had it nearly as much this winter as he did last winter, this still stinks. Of course, being Isaac – you would never really know it by his actions. He’s a little bit slower, but not complaining. He showed subtle signs – and when we checked his heartrate was pretty high and his breathing was pretty fast. He had a rougher than normal night, resulting in a trip to his pediatrician today. Sure enough – pneumonia.
The timing is particularly bad, as Isaac was supposed to go into the Operating Room last week for a look at his airway and a possible trach capping trial. This trach capping trial is just what we need to get Isaac’s trach out, one month of successful capping will allow us to go trach free. However, things could be worse. In all honesty, this mom’s intuition was telling her this is not the time to try a capping trial, no way to explain it – it just hasn’t felt right. Hopefully some extra time with lots of breathing treatments and other home interventions will get his very ugly right lung ready to perform well for us when he does get to the capping trial!
Yesterday we celebrated Talia’s birthday – this pneumonia having boy got up on the trampoline and jumped his heart out, because he is Isaac after all.

lessons…..

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Last night I had the honor of taking Isaac to his “Little Gym” class.  This was his second class, he spent the hour before class crying and signing play – over and over and over again.  He couldn’t WAIT to get there! 

Most parents would not find a little gym class an emotional experience, I fought tears straight through the class.  I came prepared with a book and my trusty IPhone to keep me busy – I didn’t need them.  I couldn’t take my eyes off of Isaac.  He danced, he roared, he jumped and he participated to the max. 

I watched the other kids and I saw how easily they crossed a balance beam, swung from the ropes, jumped on the vault……  and then I watched my Isaac.  What an amazing child he is.  As he very slowly side stepped across the balance beam to get to the part that had a railing to hold on to I thought about what amazing drive and perseverance this kid has.  He never faltered, he made it to that railing – EVERY SINGLE TIME – and he proudly held on and got to the end of the railing, then he slowly side stepped to the end.  He went back again, and again and again.  A long line developed behind him each time, but he didn’t notice – he was so very focused on completing this task.  My phenomenal little boy showed the strength that has gotten him so very far in life, in that one task.

 When it was his turn to somersault done the mat like the other kids he told his teacher no (knowing that a somersault and trach may not be a good combo) and ran very proudly down the hill that the others were rolling down.  He even braved the high beam, with no assistance, as his very nervous mama signaled no from outside of the window – and he proudly smiled at me as he disregarded my wishes and again, very slowly side stepped his way onto that beam! 

Watching that class last night was watching the essence of Isaac.  He has a strength that most adults do not show – he has a desire to achieve that cannot be matched by most.  He left that room proud, and he had good reason to be.  He may never be the star of the class in his abilities to complete the tasks correctly, but he is the most driven hard working child in the room. 

To complete the night he got home and requested a cup of water – he has been having pretty bad reflux and wants water when it happens, probably to wash away the bad taste in his mouth!  Last night I happened to be “venting” his g tube at the same time (opening the tube and letting air out of his belly).  He thought it was really cool to watch the water and bubbles leave his tube, so he asked for ice cream – and told me he wanted to watch that come out of his tube.  So, that’s what we did – besides the fact that it’s really cool to watch stuff come out of your child’s belly, it also shows us just how well that multi million dollar esophagus is working! 

So, we celebrate small victories that are truly huge in the lessons they teach us this season.  We also celebrate a boy who is well into the winter months and has not had one hospital stay since March!  Fingers crossed that we continue on this nice, smooth road!

Animal Kingdom!

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This day deserves it’s own update. Today we went to Animal Kingdom – WOW!! First, we started the day with ice cream for breakfast (which Isaac has done every day, today Talia joined him). Ice Cream for breakfast is strongly encouraged here – and Isaac is loving every minute of it. After breakfast we met Goofy and Belle here at the Village, Isaac kept some distance between them, but actually got in the picture!

From there we found Animal Kingdom, and went straight to the Lion King show we had heard so much about – it was AMAZING! Isaac got us front row seats by virtue of his Make a Wish button – he couldn’t believe his eyes. He was so excited, he kept looking at all of the characters, roaring with the lions and trumpeting with the elephants. This show was awesome, in and of itself – watching Isaac’s reactions were priceless. It was hard to keep emotions together as he cheered and clapped and danced along. The characters interacted with him and he loved it.

We also took Dr. Hess’ advice and did the Animal Safari (how could we NOT take Dr. Hess’ advice?) – again – amazing. Isaac saw elephants, a lion, giraffes, tons of birds – and he did sound effects for all of them. His elephant trumpet is the cutest thing in the world.
He braved his fears and went on another ride today – he rode dinosaurs in the sky, and loved that too. We ended the day in the petting area, and Isaac had a blast.

Once we returned to the Village it was time to head out for “Christmas”. Isaac (and all of us) got to visit with some nice families while waiting to meet Santa. It is at this time when you again face the fact that some horrible things have brought you all together, but you are ALL together. Regardless of diagnosis or need, we are together – we are together in our journeys to save our child, and in our journeys to help our other children grow up with a sick sibling. As one dad pointed out tonight – one big thing our boys have in common is a great big sister. This is just as much for “healthy kids” as it is for our not healthy kids. It is for the support of Isaac, and the fighting Isaac has done. His joy is our joy, just like his pain is our pain.

After meeting Santa we went to the gift area, where each child chooses a gift, seriously – how will we get all of this home?? Isaac did some dancing, from a distance, since there were 6 foot tall stuffed rabbits dancing too!

It’s 10:00 pm, Isaac is wide awake and holding a race with Toy Story characters on the coffee table, what an amazing sight to see!

PS – this was written last night, but I was too tired to post! Isaac did wake us up with an episode best described as mucus and saliva pouring from his trach, but it seems to have resolved itself. At this point we are choosing to chalk it up to too much fun outside….. but did get video of it to share with all of his favorite doctors, as it has happened before – we will email out the video this weekend. Today Isaac is enjoying Hollywood Studios with daddy and Talia while mama hangs out with a sick little Eli. The good news is that Tylenol is doing the trick and Eli is dancing and singing – more fun on tap for tonight!