Brotherly Love

New Year..New Blog Title..

2011-01-15T21:58:00.000-08:00

Happy New Year!! Our 'Little Logan' is not so little these days. I'm really going to try to update this blog more often for family and friends. Both boys are growing so fast before our very eyes and want to include everyone with great pics and info. Chris (Daddy) is great with words. I'm the photographer..I update pics on FB every...umm..week.. but thought I would include them to this blog for those of you who are staying away from the FB addiction;)
Brotherly Love...
Some pics from Christmas...LOVE Christmas!!!

Auntie Ash with the boys!

Uncle Ty, Grandma, Uncle Sean, Oma and PaPa

So great to spend Christmas with Grandma Steedle (Oma)


Daddy with his boys on Christmas Day!

Happy 2011!! Noah was all about wearing his hat and dancing around. He loves music and dancing. His favorite band is Candy Band...Thanks Uncle Tim and Chris for the CD...step aside Justin Bieber..Noah Nye is in the house...

Here is Logan strutting his stuff....my little stud muffin...
Physically Logan is doing GREAT! The boys love chasing after one another, dancing together and climbing onto the couch and running back and forth...lovely..Mommy is super busy being referee.
We have an evaluation with Developmental Pathways. Logan, more than likely will have PT 2 times a month. Speech therapy once a week and we are going to request an OT as well. Logan loves food. He will feed himself finger foods and will feed himself with a fork when I give him food on it. He is finally drinking from a sippy but we are working on a straw.
He clearly says Daddy, Dog, Duck, Down, Done, Drink-great with D's
Eat, Toe, Mommy, (when upset=not fair) and said Turtle for the first time the other day!
More cute pics and updates on the way...
Happy New Year to all!

18 MONTHS!

2010-12-03T12:11:00.000-08:00

Our Logan boy is 18 months old today! He is so full of personality, can be very stubborn and is testing mommy and daddy more & more...we feel like we have twins anymore. Noah and Logan do a lot of the same things, monkey see monkey do! Whatever sound Noah makes Logan will repeat him. This is a very good thing! Not so much when they're both throwing match box cars down from the loft onto our hardwood floors...ahh boys :)

It's starting to feel a lot like Christmas in the Nye household! The most wonderful time of the year!

Noah's new favorite show is Rudolph the Red-Nosed Reindeer. When we ask him what he wants for Christmas he tells us packages of presents.

Logan has been signing some words on his own without me asking. In this photo he's saying 'eat'. He also asks for milk, drink, more, all done and last night did sleep for the first time. We just started speech therapy a couple weeks ago. The therapist is skipping over the beginner course since Logan is already saying (while signing) hi, hello(when he picks up a toy phone or gets a hold of my cell), dad & sometimes mom(not fair). We are moving on to animal noises-which he picked up on moo & baahh right away. We are also working on 'touch your nose'. The cutest is when he tries to change the channel with the TV remote, we have 3 & he knows which one to use and if you give him a kleenex he will blow his little nose-too cute, I can't get enough of him!!

How big is Logan? SOOO BIG!!! Another new thing he loves to do.

Uncle Mark and Grammie made it to Denver for Thanksgiving!! Uncle Sean joined us as well! What a great Thanksgiving! I said to Noah the night before they arrived.."Guess who is coming tomorrow?" He responds "Santa Claus" He's too funny!

Earlier in the month we made a trip to Pittsburgh to visit with family and friends. The boys and I were there for a whole entire week! It was a nice and relaxing time for Mommy who was well overdue for a break! Thanks for all your help Grammie!!

Poppy drove from Virginia for a quick visit with the boys!

The boys with cousin Chris and Markee. Noah is into electronics already. He'll probably be asking for an iphone for Christmas.

Playing patty cake with Aunt Paula.

A fun filled visit with Uncle Tim and Chris. Noah had a great time singing, dancing and playing Uncle Tim's piano!

Great Grandma-ma and Norman!

Great Aunt Anna Mae!

Happy 18 Months Logan Christopher! We love you so much!!

Halloween!!!

2010-11-08T08:09:00.000-08:00

Here's just a quick update of some cool shots of our Family Themed costumes for Halloween. Any guesses as to what we're dressed up as?
Logan makes a great Lion, especially because he growls so much, and also because he has lots of courage and no fear:)
Who's afraid of ghosts? Not Logan!
Our Trick or Treat night was actually pretty warm. Here's Logan hanging out on the front porch before we head out.
Noah was thrilled with Halloween, and had a blast:) He liked to idea of getting lots of candy. Now getting him to understand that he can't eat all of it at once...That's another story...
Kaia maybe needs to lose a little weight to pull off a good todo:)
Happy Halloween!!!

Up to 18 Steps!!

2010-10-26T11:27:00.000-07:00

Logan started taking his first couple of steps 2 & 1/2 weeks ago & he is up to 18 steps in a row! Not every time, but he's getting there. He gets very excited to be on the other side of the gate walking toward the stairs....

...almost there. He is all about side stepping down the stairs but his little legs are too short (and it makes mommy very nervous).
Happy Fall to everyone! We've had a beautiful October here in Denver with very mild weather. I'm just hoping it doesn't snow for Halloween. Stay tuned for our Halloween pics & our family theme costumes!!

LOGAN'S FIRST STEPS!

2010-10-18T11:49:00.001-07:00

LOGAN TAKING MORE STEPS!

2010-10-18T11:49:00.000-07:00

VERY EXCITING NEWS!!

2010-10-18T11:35:00.000-07:00

VERY EXCITING NEWS!!

LOGAN TOOK HIS FIRST STEP ON THE 7TH!
HE WAS HOLDING ON TO THE OTTOMAN, LET GO & TOOK A STEP!

THE VERY NEXT WEEK HE TOOK 2 STEPS....AND THIS PAST WEEKEND HAS BEEN PUSHING HIMSELF UP TO STAND FROM A SQUATTING POSITION & TAKING UP TO 4 STEPS!!

The first video I took Fri night. Logan was so excited..he was popping up and almost jumping..I think he wants to run!

The second video was Sat. & you can see he is taking it a little slower. We are so proud of him...Our amazing not so Little Logan anymore ;)

Logan's League

2010-10-06T19:40:00.000-07:00

Alright, finally another update to Logan's blog! This post will focus on the Step Up for Down Syndrome Walk that happens once a year at Denver's City Park. This year we named Logan's team "Logan's League," and were very excited to gather a large team to walk to support Logan!
We had friends in from across the county to help support Logan's League. Auntie Ash was instrumental in helping the cause, and really rallied alot of her friends to come out and walk for Logan. This year we also had alot of virtual walkers, and all together we helped raise 2,885 dollars for the Mile High Down Syndrome Association!

The walk started early at 7:00 am, and the actual walk commenced at 9:00. During registration and team gatherings, everyone enjoyed the pancake breakfast. After the walk, we grilled some food and socialized for awhile before heading home.
As for an update for the well-being of Logan, we are pleased to announce he is doing quite well! He's so very close to walking, and we work with him daily to achieve this goal. He is able to free-stand for a few seconds, and he pushes a walker around at alarming speeds:) He side-steps everywhere, including up the stairs now. We hold his hands with minimal support as he takes his steps, so hopefully the next post will have a video of him walking.

Logan loves music and loves to dance! He's got quite the rhythm! Here he's doing his best Nana imitation!

Logan continues to impress us with his problem solving skills! He's doing great with placing objects in containers, such as shapes and puzzles. He's learning new sign language all of the time, and is doing well telling us what he wants. On the flip side, he's also becoming a little more of a handful for us! He's definitely testing us with the word "No," and really looks for attention. That being said, he gets away with alot because he's so cute:)
We couldn't have asked for a better day for the walk. It was a gorgeous fall day at City Park!

This year we had about 30 people actually walk, with many more Virtual Walkers. Thanks again so much for your support!!!

Surgery Successful!

2010-07-09T05:51:00.000-07:00

Wow, so it's been awhile since we've updated the blog! We've had a busy past few months, so I'll try to get everyone up to speed! Logan is now 13 months old! He's doing quite well, and we're so very proud of our little boy!
Physically, Logan continues to excel at everything he puts his mind to. He is crawling, relentlessly fast, I might add. Logan's style of crawling is quite unique, however. Unlike the traditional crawl, Logan instead crawls like a bear with his feet on the ground and his knees in the air! It's amusing to watch, but that's just Logan's style!
Also, he pulls himself up to standing with ease, even with a flat surface such as a wall. He's walking with assistance, such as his favorite toy, a plastic shopping cart, which he can push across the room. Also, he can "transition" between surfaces, such as standing at the couch and moving over to the ottoman. Needless to say, our physical therapist, Terra, is always ecstatic!Cognitively, Logan seems to be progressing very well! While Kireta & I are not experts at spotting the cognitive advances, other therapists are, and more than one has told us that they believe Logan will have a mild cognitive disability. This, of course, isn't for certain, but their observations are certainly valued, and we continue to work with and challenge Logan as often as we can.
Logan is able to put blocks into a container consistantly now, and he plays with toys such as trucks (whenever his brother lets him, he hasn't yet learned to "share") knowing that their wheels move and how they operate. Logan knows to bang the drum, or shake the rattle, etc. We're working on signing "more" with Logan, and he's doing the sign with his left hand, but not quite his right. Logan loves to wave at people, especially daddy, to whom he'll do a special wave consisting of a wave with his left hand, and waving his fist in his right hand, at the same time. I think he's trying to tell me either that he's going to give me a knuckle sandwich, or power to the people, we're not quite sure...
As you might or might not be aware, Logan just got through a minor, albeit still scary, surgery. This one was an incisional hernia repair, necessary for a slight tear in his abdominal wall caused from his chest drain tubes following open-heart surgery. Dr Karrer, a fantastic pediatric surgeon, simply made an incision (actually over the same scar from the chest tube), and then proceeded to sew together the abdominal wall with three stiches, and that was that. Since the main concern for this surgery was the anesthesia, we double scheduled the surgery with his lacrimal duct probing (in layman's terms, the unblocking of his tear ducts). Finally Logan should be able to tear like everyone else, and so his eyes will be less red and puffy, and best of all, much less tears running down his face:) This procedure was done fairly "old school," in that it was a small wire that was inserted down the inside corner of his eyes, clearing whatever blockage was there and opening up some soft muscle tissue between his tear ducts and his nasal canal. All of this sounds a bit scary, and it was, but compared with open-heart, this was a walk in the park. Logan was done with both procedures in 1.5 hours, and we were driving home by 10:30 am! I literally waited longer to get my passport renewed!
As for follow-ups with his beloved cardiologist, Dr. Carrie, we have found that while Logan's VSD (the holes in the heart) have closed completely, and his pulmonary stenosis is good at 28%, the leakage between his pulmonary artery and the right ventricle (the bottom left chamber of the heart) has progressed to border-line severe. What this means is that every time his heart (in particular his right ventricle) contracts, it forces blood up through the pulmonary artery. This is good! If you remember, one condition of tetralogy of fallot is pulmonary stenosis, or a constriction of the artery so that not enough blood can get through, thus leading to patients turning blue! What is bad is that as his right ventricle expands, it also pulls blood back towards his right ventricle, which the tricuspod valve is supposed to prevent (think of it as a one-way check valve).
So what does all of this mean? Quite simply, that Logan will need another repair, perhaps sooner than we thought. How soon? We don't know. Dr Carrie has made the point that his leakage is still much better than if they had done the traditional repair (check back 1 year for details regarding his "valve sparring technique"), and so applying that logic, I'd expect his repair to be between 3-5 years of age. This is when most kids who had their pulmonary valve completely removed would have their second open-heart. (Their third would be after adolescence). Since Logan has had his valve remaining intact, we have a very good possibility that his repair can be done via the cath lab, i.e. through his arterial line in his groin. The only problem is that he will need to be 40 lbs. He is presently only 17. Also, in 2-4 years from now, there's a good chance technology will continue to advance, and that weight could very well drop, let's say, to 30 lbs. I feel pretty confident that Logan will be 30 lbs 2-4 years from now, as he eats like a champ:) So for those of you reading this wondering if our little Logan will require another open-heart surgery, I can say probably not, but nothing's for certain. Please continue to keep Logan in your prayers, and in particular, that he will be of a proper weight so that when he does need his correction, that it can be done in the cath lab.

Alright, I've spent plenty of time evaluating Logan. Now let's get to the fun stuff, shall we? Pictures! (Also, Kireta is much better than I at posting new pictures [almost at a weekly basis] on her facebook page. Since I am obviously poor at updating this blog, you might want to check her page more often if that's what you'd like to see:) Without further ado...

We had a large 1st birthday party for our little man! We bbq'd and had everyone outdoors on a beautiful day!

Logan even got his own cake. He dug his hands into it, and realized that while it tastes pretty good, he really wasn't that into the texture:)

Logan loves his Auntie!
Nana & Gabe made the trip out from PA! We had all of the grandparents (minus PopPop Geoff who should be out later) come out for Logan's 1st birthday! Grammie flew in from Pittsburgh, and Poppy from DC!
Lately, Logan's been sporting the baby-hawk. NICE!!!
Here's the before bedtime ritual...reading books!
Who's a stud? Logan is!
The family had a little retreat up to Aspen, which was simply breath-taking! Independence Pass is our new favorite for mountain sight-seeing!
Breath it in deep!
Here's a shot watching some fireworks on the fourth of July! Surprisingly, both boys loved the show...
especially Logan:)
Can you tell Logan's default is happy?
Last, but not least, we had a great time in the neighborhood fourth of July parade! Cya next time!

Big Boy Logan is 9 Months!!

2010-03-03T20:55:00.000-08:00

Wow...9 months already!! Our little man is the charmer alright! He loves attention from everyone and gets it. His smile will melt your heart. He loves to sit up and wants to all the time. He even has been pushing himself to the sitting position by rolling from his back to stomach, rolling to his side (or bowing) and pushing up...he has done this six times already in the last couple of days! Our lil tough guy!!

Now that Logan has the sitting thing down we're working on crawling. He will stay in the position for about a minute but will get frustrated when you help him get- going. Something new he has to get used to. Terra, our physical therapist, is still very impressed with how strong Logan is. She is always so amazed with how he tolerates her maneuvering his body into different positions. Noah was crawling just before he turned 8 months but we have no doubt Logan will be soon.

Don't you just want to squeeze those cheeks? Logan also really enjoys eating his veggies, fruit and meat! He's a meat eater. Noah never cared for the meat in a jar. Logan likes chicken and turkey with gravy...pretty much if you give it to him he'll eat it!

Here's Logan with Noah and cousin Kennedy. It's so hard to get three of them to smile at the same time. Logan loves the camera and is always smiling when Mommy takes his picture...my little model.

We had such a great visit with Aunt Dondi, Kevin and Kennedy. Noah really enjoys the company of his cousin. Here we are at the Denver Aquarium. We finally had a nice day to walk around downtown as well. That's all for now. Happy 9 Months my Logan!!

LOGAN IS 8 MONTHS OLD!!!

2010-02-03T20:19:00.000-08:00

Our little guy is 8 months and such a joy! He officially started sitting on his own 2 weeks ago! He is getting bigger, more personality and of course cuter each week:)

What a big boy!

The boys hanging out. Noah always looks out for his little brother.

Logan is holding his bottle on his own here and there. He's flexible and holds on with the help of his feet as well.

Here's Auntie Ash with the boys. A fun filled time at Chuck E. Cheese's....They love hanging out with their Auntie!!

HAPPY NEW YEAR!!

2010-01-21T06:56:00.001-08:00

Well hello again and Happy New Year!!! First of all, we'd like to apologize for not updating the blog in a very, very, very long time. Yes, of course it was the holidays, and for those of you who didn't know, we went back East for two weeks during Christmas time. That being said, it's still a lame excuse for not updating everyone more frequently, and for that, we apologize.
As you can see, our boys are doing very well, thank you! They both keep getting more and more handsome and continue to enrich our lives! Noah isn't quite two yet, but you'd think he was as he has hit his "terrible twos" early and 1.5! He certainly tests us, but he'll figure out his groove soon enough! As for our dear Logan, he is simply thriving! We're happy to report that he is very healthy, and even though his older brother has been through various illnesses for the past month (including hives, you'd think it was leapersy by the look of it, just an awful sickness), Logan has fared well and is happier than ever!
In the past two weeks we have taken Logan into Children's Hospital in Denver to have his six month checkup, as well as another EKG & Echo cardiogram (sonogram of the heart). Dr Elias (his pediatrician) is very impressed by Logan, and likes that he is sounding out "gaa's, goo's, and ma's." He also has taken up growling in the past few months, which is quite cute for now, but could be creepy later on:) All of these sounds are very good signs and Logan is actually doing everything a "typical" 7 month old would be doing. Also, some blood work was taken to test Logan's thyroid (a normal procedure for children with down syndrome) and we are happy to report his thyroid is at normal levels! Also, his blood count looks great as well, something you have to watch as children with down syndrome are 25 times more likely to develop childhood leukemia.
As for the appointment with our favorite doctor in the world, Dr. Carrie (his cardiologist), everything went smooth as silk. The VSD (Ventricular Septal Defect, or hole is the bottom two chambers in his heart) has completely closed and is as good as sealed. The holes that all babies are born with open are also completely sealed, and his pressure gradient in his pulmonary artery is perfect at 17% leakage (you don't want too low or high, this is what they strive for). His next appointment will be in three months, just to continue to verify everything is healing nicely.
As for strength, look out Lou Ferrigno!!! Logan is excelling at physical therapy, and again, is doing everything a "typical" 7 month old would be doing. He is able to sit up on his own for short amounts of time (his record is two minutes), and is able to support his own weight when I support him standing up! We're getting him ready for crawling, and Logan is able to hold the position of up on his knees and hands for short amounts of time also. The family seems to get a kick out of what his Uncle Mark calls "killers." When Logan lies on his back, he'll lift his head up in a crunch position, as well as his legs off the floor, doing a perfect "V" shape. We think it's hilarious, as most adults can't even do this maneuver! Like I said before, Logan will be my little powerlifter!
One of Noah's presents was an Elmo kitchen, which he absolutely loves! He loves to help Daddy cook and this is a good way for him to practice!
This is Logan with his Poppy out in DC! We spent one week in DC and the other in Lancaster, PA!
Wouldn't you know that the night we decided to drive up to Lancaster from DC there was a huge snowstorm! What normally takes 2.5 hours took six! We got into Lancaster about 4:15 am, and thankfully had Poppy's 4 wheel drive truck to do it in! We probably passed 50 cars off the side of the road in accidents!

Here's a great shot of my Mom, Geoff, and Gabe (all known to Noah & Logan as Nana, PopPop, and Uncle Gabe, respectively). This was a special visit for me for a few of reasons. Number one, they had not yet had a chance to meet Logan yet. Number two, I haven't been back East for Christmas for at least seven years, possibly longer. And last, but certainly not least, we had the opportunity to introduce Logan to his great Nana just before she passed away. The trip was special, and bittersweet at the same time, but I'm so thankful that we all had a chance to see our wonderful Nana one last time.
This is a great shot of how cute Logan can be! He smiles so often is such a great baby!
Logan even puts up with us dressing him in silly costumes like a reindeer! (At least it's not that pink bunny suit from "The Christmas Story"!
PopPop and Noah got along great, and liked to be silly.
This is Yogi the bear, or at least a distant cousin.
Smile Uncle Gabe, it's picture time!
Nana really enjoyed spending time with the boys, and held Logan whenever she could!
Logan also got a chance to be held for the first time by his Great Grandma!!! We visited with her before she went to Illinois for Christmas. We also had the opportunity to introduce the boys to their Great Grandfather, Ed, up in Spring City, PA. It was great to see both of them!
Logan likes to take pictures, but Noah is a little over it.
Gruncle Rand was down at Great Nana & PopPops and was able to see the boys as well.
Logan also got to meet Great PopPop for the first time! The similarities are striking!!! Look PopPop, it's a mini you!
Logan also met his Great Aunt Sis, who was happy to meet him! All in all, a great time back East, and we're very thankful that Logan was able to meet so many people for the very first time!

That's all for now, but we promise to update the blog more frequently! Check back soon!

HAPPY HALLOWEEN!!

2009-10-31T07:57:00.000-07:00

Check out all the snow we got starting Wed. 19 inches...craziness! Half of it has melted away already. Gotta love Colorado weather;)

Lil' Pumpkin Logan

Watch out for this Ninja!

Happy pumpkin boy and the stoic ninja. Logan is always smiling for pics, Noah is over it.

Logan loves music and when you sing to him...he's such a sweetie!!

Picture Update

2009-10-28T13:31:00.000-07:00

This update is mostly cute new photos of Logan. Everything seems pretty anti-climatic since undergoing open-heart surgery, but don't think we're complaining! He's up to 13 lbs for Halloween, and 24.5 inches long. He won't be going back to the cardiologist until January, and his checkups are going great. We're pleased to inform everyone that Logan is doing a tremendous job advancing in his physical therapy as well as cognitive skills. His physical therapist, Terra, is always extremely impressed by how well Logan is progressing. Logan can now hold his head up at a 90 degree angle when on his tummy, and is doing well at sitting when supported by his "boppy" pillow. He "tracks" very well with his eyes, and is acutely aware of noise and his surroundings. He certainly likes to smile alot, as evidenced by the above picture. Doesn't he look like a fake baby doll with his lips pursed for the fake bottle?
Here's the boppy pillow and one of Logan's new favorite toys. He loves things he can grasp, and I must say, he's quite strong! I personally can't wait to get him in the gym and start training for our future Special Olympics power-lifter:)
Here Logan just got done telling a corny joke, drum roll please...
Logan always enjoys his brother, Noah. Here's a great shot of them holding hands.
Look at this little stud!!! He's telling Mommy not to worry and to "hang loose."
Logan is always working on perfecting the cool kid smile. Next week we'll work on the zoolander face.
We've also started putting Logan in the exer-saucer. His feet can't quite hit the ground yet, but Noah makes sure he's doing just fine.
Logan is displaying his Herculean strength here and is starting to support his body with his arms. Next week he should be up for push ups.

Thanks for checking on our boy! He's doing fantastic! We'll update as we get some more great shots! Thanks for everyone's thoughts and prayers!

Happy 4 Months Logan!!

2009-10-03T10:18:00.000-07:00

It's hard to believe our little man is 4 months old already! He is such a good baby and has so much personality. He is smiling a ton and has been talkative lately too!! Here are a few of the many happy faces of our handsome Logan.

THANKS AGAIN TO EVERYONE FOR THE DONATIONS AND SUPPORT FOR OUR STEP UP WALK, WE REALLY APPRECIATE IT!!

StepUp Walk & Pittsburgh Visit

2009-10-01T19:13:00.000-07:00

Well, it's been a little while, but we have alot of great pictures to share with everyone! On Sunday, September, 27th, Kireta and I participated in our first Down syndrome event. It was a walk for Down syndrome in Denver's City Park, and it was an excellent first event! The turnout was awesome, with roughly 2000+ people and dozens of teams. Above is Team Logan along with Team Kyle & Hunter (Kyle & Hunter are identical twins who were born with Down syndrome. Their parents, Michelle & Kelly, came down to our home with more information about Down syndrome as well as organizations such as Mile High Down Syndrome Association.) We had alot of people supporting us, both at the walk, and via Internet support as virtual walkers! Auntie Ash was instrumental in organizing alot of her friends to show up, most of whom we met for the first time at the walk! And Brad & Lisa also rounded up alot of friends, and together with Team Kyle & Hunter, we had a strong team!This is a shot of my dad and brother, Tyler. It was a perfect day for the walk! We got there early, and setup tents and chairs. The walk itself was 1 or 2 miles, your choice. Afterwards, Kireta & I got a chance to meet some really excellent people and families. We're really looking forward to future events!

Here's a great shot of Kyle & Hunter. Their dad & grandma are with them here.

Here's a shot of Michelle. She was great and took the time to introduce us to alot of people.

Here's a shot of the Nye's.

Kireta took the time to make this bib for Logan.

Here's Auntie Ash with her friend, Rachael. Rachael's family was also a part of the walk by donating to MHDSA and becoming "virtual walkers."

From left to right: Colleen, Kay, and Lisa (Grandma) Nye

The proud parents!

From left to right: Carley, Brinley, Auntie Ash, Rachael, & Kireta

These are some shots from our quick visit back to Pittsburgh! This was Logan's first airplane ride, and he traveled like a champ! Above is Aunt Alex.

Here's Grammie with the boys.

Logan got to meet Aunt Paula with cousins Markee & Chris. Noah had a blast playing with the cousins!

Here's my little man! His head control is getting so much better! He continues to impress us!

We were extremely lucky that my Grandma and Aunt Cathy were in Pittsburgh for the weekend visiting Uncle Tim & Chris! Everyone made the trip up to Sewickley and it was awesome to see everyone! This was also Aunt Cathy's first time meeting Noah as well, which made it extra special.

Here's Uncle Chris holding Logan.

Uncle Tim and Grandma look pleased to finally meet Logan.

Aunt Cathy's certainly happy! Logan's saying, "What's up?"

Our Little Logan doesn't look so little anymore... We're going to have to come up with a new nickname:)

Here's Uncle Mark.

Here's a great shot of Kireta's family! From Left: Norman, Great Grandma-ma, and Pappy.

This is Aunt Nesie & Cuz Christine. They're ecstatic about meeting Logan!

Pappy's so happy!

Great Grandma-ma is happy to finally hold her great grandson!

That's all for now! Thanks for taking the time to follow Logan!

Smiles!

2009-09-12T10:24:00.000-07:00

This was a good week for us. Kireta and I were a little apprehensive going into our cardiologist appointment on the ninth. If you've followed our previous post, you'll know that at Logan's last appointment they found some blood flow from Logan's left ventricle (bottom right chamber of the heart) to his right atrium (upper left chamber). Also, his pulmonary stenosis was a bit higher than we would have liked, at 46%.

However, this last visit proved to be very positive! Our cardiologist, Dr. Villavincencio, came into the room to supervise the echo-cardiogram. She was very pleased by the results, as his pulmonary stenosis was down to "ideal" levels at 33%. She explained that a zero level of stenosis would mean total leakage up and down his pulmonary artery, thus getting unwanted backflow into the right ventricle. Conversely, too much stenosis would mean his heart would have to pump to hard to get blood to his lungs. So, again, we're very thankful that his stenosis levels are "ideal."

Logan seems to be happy with the results as well:) Also, Dr. Villavincencio had to look quite hard to even find the blood flow from the left ventricle to the right atrium. She described this leak as "trivial," and that if it remains this size, it will only be something to monitor, and not correct. I asked Dr. Carrie if it would need corrected, would they be able to do so in the cath lab (correction through the femoral artery in the leg), and she replied that at this time, surgical correction would be necessary, but in five years, who knows?

When asked if this blood flow was, in essence, a new hole, or something that was overlooked, the answer is not so clear. Because Logan's VSD patch was very high up between the ventricles, it also happened to be very close to the aorta valve. This is a no-man's land for surgeons, because the potential risk for damaging the aorta is very critical. So Logan's VSD patch was sewn in near perfect, however, a little leakage still occurs because of a small area not sewn up adjacent to the aorta.

So here goes my thoery (best case scenario by the way): The left ventricle is very high pressure. A small hole in the VSD patch would mean that high velocity blood (from the left ventricle) would "spurt" through the VSD patch. Because of it's location, it's possible that the blood spurt would be directed at one of the leaflets of the tricupsid valve (a one way valve from the right atrium to the right ventricle) and thus jettison into the left atrium, explaining the blood leakage. If this theory is correct, then the leak should also be temporary, as the heart will grow around the VSD patch and seal off completely in time. Of course, only time will tell, but we remain optimistic.

Thank you again for your continued support and prayers. Logan is a true testament that prayers work. For those of you in the Denver area, remember Logan's walk for Down syndrome is on Sunday, September 27th. We're looking forward to a great walk, and will update the blog following the walk. That's all for now!

I'M THREE MONTHS OLD!!!

2009-09-04T20:29:00.000-07:00

Ok, ok, so it's been awhile since our last post. Sorry to keep everyone waiting, but we've been enjoying our home time with Logan. I can't believe it's already been 2.5 weeks since the surgery. Time flies, but as you can see, our little Logan is doing fantastic! He's become prone to lots of smiles and making cooing noises!

We bought this "bumbo" seat which helps Logan with his head control. As a special feature, it also makes his neck disappear. Tada!!!

On August 30th, Logan was baptised at Parker United Methodist Church. We were able to give everyone an update at church and thank everyone for their prayers.

Logan's Grammie came out for two weeks to help watch over Noah during our stay at the hospital. This helped us out immensely as Noah was able to stay home and feel comfortable with his normal routine. One less thing for us to worry about!

Here's a great shot at Red Rocks in Morrison, CO. Logan's trying to do a jedi mind trick, and Noah's got his serious face on. We look forward to being able to particiapte in more family activities now that Logan has his surgery behind him. Logan's next cardiologist apointment is on the ninth. We remain a little anxious because on one of his post-op echos they found some blood flow from the left ventricle to the right atrium. We really don't have a whole lot of information for everyone as of yet, but we'll find out much more on the 9th. Hopefully, however, this is something we will just have to watch, or else something that can be fixed through the cath lab in the future, but like I said earlier, we should know more on the 9th.

Thanks to everyone for your continued support!

Home Sweet Home!!

2009-08-22T20:21:00.000-07:00

Noah loves the wagon rides at Children's

Grandpa's visit

Free from tubes and wires!!

Logan was released to go home today at 10:15AM! Less than a week later, what a little rock star!! This morning he had another x-ray (which looked great) and had the final word from the cardiologist who did the 'rounds' for the day. He said by listening to Logan's heart you never would have guessed he had a heart defect. We are so blessed his surgery was a great success! Thanks again to everyone for all the prayers and concern for our Little Logan.

Ready to go home!

Yay Momma!! We're Outta Here!!

Going Home Soon!!

2009-08-21T13:32:00.000-07:00

OUR AWESOME SURGEON DR. MAX MITCHELL!!!

GRAMMIE

GRANDMA AND UNCLE TY

AUNTIE ASH

We received some pretty exciting news from Dr. Mitchell himself this morning. He says Logan looks great and is doing very well and may be released to go home tomorrow!! As long as we feel comfortable, of course. He is only on a whisper of oxygen and taking Tylenol and Lasiks. We have to be sure to care for his incision by cleaning it with soap and water and 'scoop' him up when we lift him. We're ready to take our boy home!!

Moving on Up...to the CPCU!!!

2009-08-20T10:48:00.000-07:00

Thursday, 11:55 AM (Day 4). Well I am pleased to announce more good news! In the next hour Logan will be moved up to the ninth floor of the hospital, and upgraded to the CPCU (Cardiac Progressive Care Unit). This is great news!

I am pleased to report that Logan's lungs are doing great, and that he is almost off oxygen completely (he's on just a whisper). This is also great news, as the high-flow oxygen they had him on yesterday mixed a little too much with his formula and he spit up twice yesterday. Logan's normally a great eater, and has never thrown up before, but he hasn't had a problem since yesterday afternoon, so we're on the right track:)

Logan also had most of his tubes removed yesterday! They had pulled one of his drain tubes early yesterday, and they pulled the second one this morning! They also got rid of some sensor tubes, as well as an IV line and an arterial line. What this all boils down to is seeing our baby boy returning to normal and that he is quickly becoming healthy again! (It also makes it MUCH easier to hold him:)

His color looks great, his blood pressure is great, heart rate, oxygen, everything is really positive. As we walk through the CICU we are reminded how extremely lucky we are, because there are many other small children who are having some complications and our hearts break for them. We've met some incredible parents, and realize that Logan is really quite lucky and, of course, special:)

Here's a great shot of how Logan's scar looks. The top gauze is simply to protect his incision from drool and sweat. The bottom two gauze are where they removed the drain tubes. The pink irritation adjacent the incision scar is simply from the tape being removed and will heal within the next day or so.

This morning Pastor Terry stopped by for a quick blessing and prayer over Logan. Logan is certainly a testament that prayers work:) Look at how content and happy he is! The CICU nurses of course love him to death! (By the way, the staff is simply incredible at Children's. We have yet to run into a nurse or doctor that we don't like!) He's only cried a few times in here, and we've noticed his cry seems a bit clearer and not as raspy, although higher pitched.

Logan has gotten back to his normal expressions, including the random smile and smirk! Overall, we're extremely pleased at how well he is recovering, and we look forward to bringing him home soon!

Day 3

2009-08-19T07:50:00.000-07:00

Logan right out of surgery. This is with his breathing tubes still in.

8:50 AM. Yesterday was a very progressive day for Little Logan. He's healing impressively well and on his way to making a full recovery! The biggest feat yesterday (by far) was getting his breathing tubes out. He was also able to get his catheter out, also a plus. At one point yesterday afternoon, he went 8 hours without peeing, and they threatened him to reattach a catheter to him, at which point he promptly peed freely.

Logan has also started to eat again. We started him off with some sugar water, which he thoroughly enjoyed. Throughout the night he drank one 2 oz bottle of formula, followed later by a 4 oz bottle. Logan's never really had a problem eating:)
This is our most wonderful cardiac doctor, Dr. Carrie Villavincencio! She has stopped by to check on Logan very frequently, and we're simply amazed at her level of compassion for him.

One area of concern for Logan is that his right entrance to his lung is slightly collapsed. This is not uncommon after surgery, especially with Down syndrome patients. It's typically caused by shallow breathes and not being picked up and handed all about. The drain tubes in the void spaces between his lungs and heart are more than likely causing him to take shallow breaths, to avoid his lungs contacting them and causing irritation. So, in order to counter-balance this, they simply put him on a different cannula of oxygen, providing him with slightly more oxygen. This problem should be go away on its own within 24 hours.

Logan will have one of the drain tubes removed today (both were about to be removed, but he's still got some fluid draining from the right drain tube) and both are expected to be out by tomorrow. Logan will more than likely spend today in the CICU, with hopes of going to the CPCU (the step-down unit) tomorrow.
On a final note, we finally got the opportunity to hold Logan!!! I can't tell you how happy that makes us:) It's really great to have him in your arms, and Logan really seems to have missed it! He's right at home being held! He's got such a great temperament, and really has only cried twice since he's been here. We can't to get him all better and eventually home! Thanks for everyone's healing prayers; Logan is a testament that they work!

Breathing tube out!

2009-08-18T08:39:00.000-07:00

9:38 AM. They just pulled Logan's breathing tube out (a process called extubation for all you nerds out there...)! This means he is recovering at an incredible rate! The breathing tube provided positive pressure for his lungs, but it seems our little super-hero continues to beat the odds! Currently they have him on a cannula of oxygen (just a small clear tube that's slightly inserted into his nostrils), but he'll be off of that soon too. Now that the tube is out, Logan will be able to "eat" relatively soon. In two hours he can have clear liquids (we'll give him Pedialite, a baby gatorade so to speak), and in four hours some formula. We personally can't wait to hold our little guy!

The CICU

2009-08-18T05:07:00.000-07:00

6:O7 AM. Well after a huge day yesterday, today is a fresh start, and we are happy to report that Logan is doing great. His breathing is doing really good, in fact, and if his blood weren't slightly acidic now (something that's completely normal after surgery), then they would have already pulled him off the ventilator and had his breathing tubes removed. This will more than likely happen later today. (Our nurse said this is remarkable for the day after surgery). Logan had two drain tubes installed during the surgery that help his body remove excess fluid from his void spaces and lungs. This morning they are collecting less fluid and the fluids are running more clear (again, great news). Logan is currently on a few different medications (morphine, tylenol, dopamine, and lasik), again, all part of the procedure. He looks great, given what he's been through, but we can't wait to get his breathing tubes out. He isn't as swollen as I'd expected him to be, and his coloring looks good. We should be able to hold him today too, which we've been yearning to do. Yesterday they had to give him quite a bit of fluids, because his blood pressure was a bit low. Normally after heart surgery, your heart will "sag." What this means is that 6-8 hours post surgery the heart has its hardest time recovering, but that's what the CICU is for. The drugs they've given him help his heart contract more, in essence loosening it up. Remember, Logan's exterior wall of the heart had become thicker (since the heart is a muscle and it was working extra hard to get him oxygen), and so also more stiff. Now that he has 4 separate chambers in his heart, like we all do, his heart has to figure a way to pump to get all of the blood going where it should. I can't tell you what it's like to look up at his vitals and see his oxygen in the high 90's! No more tet spells for Logan (not that he's had any, but now that risk is over!) We'll get some pictures out later today as well.

GREAT NEWS!!!

2009-08-17T12:13:00.000-07:00

We just got word of some FANTASTIC NEWS!!! Logan is off of by-pass and stable! The surgery went textbook, and with no major complications!!! Also, even more shocking is that they WERE ABLE TO DO THE VALVE-SPARRING TECHNIQUE!!! I'm in such a state of shock right now that I don't even know what to say. This means that more than likely, Logan will NOT REQUIRE ANY MORE SURGERIES!!! Thanks to all of of you who have kept Logan in your thoughts and prayers! I've always known that prayer works, but we are truly humbled by this whole experience, and know without a doubt that the Lord was in the operating room and looking after our Logan. We are so extremely grateful and in a state of awe. Logan only had a 20% chance of having this procedure done, and we were preparing for the worst. He's got to be one of the youngest babies to have this procedure done (most have to wait 4-8 months before they are able to do it). In 45 more minutes he'll be in the CICU and we'll be able to see him. A sincere thanks to everyone who has thought about our Logan. More to come...

VSD Patch Installed!

2009-08-17T11:14:00.000-07:00

12:15 pm. Julianne just informed us that Logan just had his VSD (Ventricular Septal Defect, or the hole between the bottom two chambers of his heart) patched. They do this by cutting a small piece of gortex material and literally sewing it around the hole. Logan's hole was about the size of an adult's pinky nail. They hadn't gotten to his pulmonary artery yet, but that's what they'll tackle next, so I'll have more on that next hour. By the way, his heart is about the size of his own fist. Keep the prayers coming, they're working!

Incision & Bypass

2009-08-17T10:16:00.000-07:00

11:15 am. Logan has had his incision and everything is going according to plan. He has been on bypass now for about 30 minutes, and everything is running smoothly. Both Dr Carrie and Nurse Julianne came out for the update. Dr Carrie said that Logan has a thymus, thus they canceled the blood test for St DiGeorge disease (one less thing to worry about!!!). Looking at the charts, they said that Logan will need to have a pulmonary valve of 8 mm in order for him to do the valve-sparring technique (although through the echos we haven't been able to get it higher than 7 mm). So more than likely he'll have the transannular patch (which will mean future surgeries), but we won't know until they get in there and physically measure it for sure. Kireta and I have been preparing for this as well, so at this point, we just want no major complications. The next step is for them to open up the right side of the heart, and start performing the necessary corrections. Look for an update in an hour.

Update to surgery

2009-08-17T09:11:00.000-07:00

The time is 10:11 am as I write this. Dr Carrie came out to give us a personal update this morning. She informed us that Logan took to anesthesia well, and no further medications were necessary. His oxygen count two hours prior to surgery was all the way up to 88, but just before surgery had fallen again down to 78. Also, his hemoglobin was high, which is another sign that we are doing the surgery at the right time (as I had been worried that we were putting him in too early). It took a little longer to get all of the "lines" in Logan this morning, but the breathing tube went in without a hitch. As we speak they are preparing him for the incision. Dr Carrie also informed us that since they are tapping an arterial line, she's also going to send his blood away to be examined for St DiGeorge disease (a disease that is a chromosomal anomaly in the 22nd chromosome). Since it's highly unlikely that he has this disorder, I'm not going to worry everyone with the details of this disease, but just be aware they are screening him for it because of his tetraology of fallot.

The Big Day

2009-08-17T06:05:00.000-07:00

Good morning everyone. Today is the big day, the day of little Logan's surgery. I'll try to keep everyone as up-to-date as I am able, please bear with us:) The time right now is 7:07 am, MST. Kireta and I checked in at 6:00 am, and the surgery is planned at 9:00 am. We're currently sitting in a private pre-op room, and we've just met with the anesthesiologist and Dr Max Mitchell, Logan's heart surgeon. Dr Mitchell informed us that Logan's surgery should be over around 1:00-2:00 pm or so, pending no major developments. Thanks in advance for everyone's prayers, they really do work! Yesterday Logan had at least five whole churches praying for him, which was pretty special. (Geoff informed me that he's even got a Lutheran Church in East Africa praying for him!!!) Pastor Terri Todd took Logan down to the front of the congregation yesterday, and had everyone pray for him, which was incredibly comforting. That's all for now...

Logan's alert

2009-08-09T19:48:00.000-07:00

Alright everyone, here's a new update on Logan! On August 4th we took him into see his pediatrician, Dr Elias. He's up to a hefty 9 lbs, 15 ozs, and his oxygen remained in the high seventies. Last week, however, I received a phone call from Dr Carrie about her conversation with Dr Mitchell (the cardiac surgeon). Dr Mitchell felt that Logan was an appropriate weight for surgery and wanted to up his surgery date to mid-August. Kireta and I were a little disappointed at first, as we wanted to wait as long as possible with the hopes of upping Logan's odds for the valve-sparring technique. After further talking with Dr Carrie, however, we discovered that his odds would more than likely not increase, due to the fact that even though his pulmonary artery might grow, Logan would also, and it's simply a matter of ratio. Dr Carrie was also concerned that waiting until October would put Logan into surgery during prime time for RSV (a respiratory illness). So after much thought on the matter, we decided to heed the advise of the professionals and schedule Logan's heart surgery for Monday, August 17th.

Kireta and I had a chance to meet with Dr Max Mitchell about a week ago. He's a very nice, down to earth gentlemen, and we both feel comfortable placing Logan's life in his care. When we met him, he had actually just come from the same surgery that Logan will be requiring! In fact, the other boy was the same age, with the same size pulmonary artery! When I asked Dr Mitchell about how often he does this particular surgery, he replied that this was the third one this week, and assured me that's it's all he does. That being said, it's still open-heart surgery, and Dr Mitchell informed us that Logan has a 95% chance of no major complications, with an even higher mortality rate.

I'll now let everyone know a little of what to expect in the short future. On Friday, August 14th, Logan will go in for his "Pre-Op Surgery." This is an all day event, and since they'll be sedating Logan to get a perfectly accurate echo-cardiogram, as well as some other tests, we'll have to stop feeding him at 5:30 am, which should be interesting to say the least:) He'll have his blood tested, followed by a Lateral Chest X-ray. They'll then do another echocardiogram since he'll be knocked out. Kireta will then meet with the Nurse Practitioner that will be giving us an hour by hour update during the day of surgery. (I'll be updating his blog every hour the day of surgery for those of you interested). Kireta will then go on a tour of CICU (Cardiac Intensive Care Unit) and the step down unit or CPCU (Cardiac Progressive Care Unit). Next is an appointment with the Anesthesiologist, followed by another meeting with Dr Mitchell.

On the big day, Monday, August 17th, we'll be arriving at the hospital at 9:00 am. The surgery will last anywhere from 5-8 hours, and we'll be updated every hour by the Physician's assistant. Here's what to expect... The anesthesiologist will put Logan to sleep (this period is called induction). A breathing tube will be placed down his throat and one or more IV's will be established to help maintain Logan's fluids. His chest will then be swabbed with iodine and a perfusionist will operate the cardiopulmonary bypass machine. Open-heart surgery means that the heart will be opened to perform the repair. An incision will be made on Logan's chest, just below his collarbone to just below his nipples to give Dr Mitchell access to the heart. Logan will then be placed on the bypass machine to enable Dr Mitchell to operate. They'll place several special tubes called "cannulas" into his aorta and the right atrium and/or the vena cavae (which collects blood coming back to the heart from the body). Blood is then transferred from the bypass machine where it is filtered, warmed or cooled, and oxygen is added before pumping it back into the body. When the tubes and monitoring wires are all in place, a clamp is placed on the ascending aorta (and at this point forward is called "cross clamp time")

The heart usually stops when the child is cold, but a drug called "cardioplegia" is used to help protect the heart. The heart will also be bathed with a cold saline solution during surgery to further protect Logan. At this point Dr Mitchell will open the heart, and decide whether or not to do the valve-sparring technique, or to do the trans-annualar patch. Sometimes, surgeons attempt to do the valve-sparring technique first, and then see how his heart works when blood pumps through it to see if the patient can handle it. If the heart has too much pressure, however, then the trans-annular patch must be used, but not without a cost. At this point, it becomes a little more complicated, which is why the surgeon has to weigh this option very carefully. (In other words, don't be surprised on Monday when I'm giving you the play-by-play that Logan got the valve-sparring technique, only to be followed by a transannular patch)

Dr Mitchell will have to resect (cut away) the muscle beneath Logan's pulmonary valve, as well as the area above (the supra valve). At this point they'll also fix Logan's VSD (Ventricular Septal Defect) by closing up the hole with Gortex. This will never again need to be fixed. Once the repairs are completed, they will warm Logan back up and the cross clamp will be removed. The heart usually begins beating once it is warm and blood is flowing through it again. Logan will be weaned off the bypass machine at this point, which is a very critical time period. After this period Dr Mitchell will place two to three drain tubes attached to Logan's chest area near the ribs. These tubes help drain fluids that accumulate inside the chest because of the surgery.

Logan will at this point be transferred to the CICU and the next 72 hours are critical. Kireta and I will be able to be right by his side, including modest sleeping accommodations. After about 2-3 days in the CICU, Logan should be transferred to the CPCU. We'll continue to keep everyone updated as best as we are able. Logan should be out of the hospital entirely in one weeks time, and they expect a total of six weeks to recover. (Good thing Logan's not crawling around all over the place...Try telling an infant to "take it easy!")

Never wanting to end a post on such serious news, I'll update you on some remarkable progress by our beautiful boy! First, as you can see, Logan has begun smiling! It's so cute when he does this, and it's awesome when we can capture it on film. Also, he's begun cooing which is a relief, because his cry can be quite shrill! Also, Logan has rolled over once!!! He did it a day before he turned 8 weeks! He beat Noah! Way to go Logan!!! Logan never ceases to amaze us and we are so grateful to have him in our lives! He is such an incredible blessing and we don't know what we'd do without him.

Finally, Kireta's dad and brother came out to see Logan before the surgery and it was refreshing to spend some time with them. Kireta's mom, Barb, will be flying out for the surgery as well, and of course we have Brad and Lisa right here in Parker to help us for support. Thanks for all of your prayers, we need them now more than ever! Please keep Logan in your thoughts and prayers, especially August 17th! That's all for now. We'll keep you posted.

2009-07-30T13:10:00.000-07:00

Kireta and I just got back from the cardiologist today. We remained optimistic on Logan's oxygen levels because his coloring looks so good. Unfortunately, the echo cardiogram did not reflect this. Logan's oxygen levels fell to the high seventies, about a 10 point drop in three weeks. Also, the echo confirmed what we had been fearing; that his pulmonary artery has stayed the same size, failing to grow and holding in steady at 6mm. His pressure-gradient has now risen to 76% due to the muscle beneath the pulmonary artery growing.

What this means for us is that Logan's surgery will be much sooner than expected. We were hoping Logan could make it to the 6-8 month mark, but now it looks like it'll be before he reaches 4 months of age. Dr Carrie Villavincencio (our cardiologist who is wonderful by the way) would like to see Logan in two weeks, and we'll determine when he'll need surgery. Currently this could be as early as late August, or as late as late September. We would like to see him go to at least 4 months of age, however, Dr Carrie doesn't want to risk flu season. If you've been reading the blog earlier on, you'll know that he had a 50/50 chance at having a valve-sparring technique done, as opposed to the transannualr patch. At this point, however, since he is still very young and small, his odds have decreased to about a 20% chance of having the valve-sparring technique. (This requiring only one surgery and the transannular of having at least one more between the ages of 3-14). Today we also learned that Logan's valve ABOVE the pulmonary artery (called the supra valve) is also narrow. This means that he has narrowing in all three places (the muscle beneath the pulmonary artery, the pulmonary valve itself, and the supra valve above). We're told this is also common, but nonetheless contributing to his high pressure-gradient. Now for a bit of good news. Logan is up to 9 lbs, 10 oz, and is 21 3/4 inches long. He's growing like a weed, and is doing great with his "tummy time" and other physical therapies. We've decided to go with Dr. Max Mitchell as Logan's surgeon. He's very bright, and has been practicing for 22 years. He's a bit younger than the other chief surgeon at Children's, but we hope this will aid Logan's chances for the valve-sparring technique. Also, by doing the surgery earlier than expected, Logan will not yet be rolling over, which will certainly aid in his six week recovery. We can expect Logan to be in the hospital for one week after surgery prior to coming home. Another great piece of news is that he will not require any life-long drugs, only a bit of Lasik for a few weeks following surgery (which will aid in removing any fluid from his lungs.) Also, if Logan does require the transannular patch, we're hoping that he'll be able to hold out long enough for his second surgery until the technology comes to the USA to do the procedure through his leg (as opposed to another open-heart surgery). Currently in Europe they are doing this procedure through the leg in adults.
Again, your thoughts and prayers are most appreciated!!! Remember, the success rate for this surgery is extremely high, and we know Logan will get through this with God's Grace. Thanks again to all who read this! We'll keep you updated...

2009-07-23T14:13:00.000-07:00

Ok, finally a new update on Logan! Sorry for the delay in news, it's just that we've really just enjoyed Logan being a baby! He is so good for us! Aside from having a little temper, his temperament is excellent! He is growing like a weed, but since we haven't taken him back to the doctor's office since 7/5 we don't have a new weight yet (last time it was 8 lbs 5 oz). His coloring is still great, and aside from losing hair (he's still cute though:), he's never looked better. He's definitely more "solid."
Yesterday, early intervention came out to the house to evaluate Logan. Although Logan automatically qualifies for state services given Trisomy 21, the initial eval must still take place. Three women came out, including Laura, his service coordinator, Jenn, his occupational therapist, and Amy, a nurse. Jenn and Amy won't be coming back, but Laura will be our coordinator for 3 years, helping us evaluate Logan's needs.
Up until the age of 3, Logan gets free therapy from the state. From everything that we've read and everybody we've talked to, early intervention is absolutely critical to advancing Logan's development, and helping him advance as much as practical. Again, Logan will more than likely learn things at 1/2 to 1/3 the rate that Noah will learn things. Things such as sitting up, crawling, walking, talking, etc. We were really happy with the initial visit, and can't wait to help Logan as best we can.
Jenn was extremely impressed with Logan's muscle tone (that's my boy!). She said that not only is it fantastic, but that he's actually above normal children. This is remarkable given that both down syndrome babies and congenital heart defect babies have low muscle tone. He was able to hold his neck up on his stomach for quite some time. She was extremely impressed with his leg strength, and we remain optimistic that this will help him develop gross motor skills at a good rate. Jenn would like his short term goals to be able to prop himself up on his elbows while on his stomach, and to be able to roll over in 3 more months. (This actually puts him very close to a normal baby).Jenn also tested his vision and awareness. Again, Logan excelled. He is very aware of his surroundings, and turns his head to where he hears sounds. He also was able to focus on objects in front of him. I was a little worried about his vision previously, because I thought he might have Nystgmus, because his eyes seemed to jerk a little, but they don't believe he has this at this time. Jenn also commented at how mild Logan's down syndrome's features were. In particular, she was keenly aware of his tongue. His tongue does not protrude (unless of course he wants to push it out, which he does alot like most babies). This hopefully will help his speech development in the future, and again we remain optimistic.
At this point, since he is so young, Laura will set up bi-monthly visits with a physical therapist until approximately 3-4 months of age. At that point, we can re-evaluate his needs. Laura explained to us that we can have more or less treatment depending on our needs. Personally, Kireta and I would like to get the maximum amount of help available to help Logan, which will eventually be a speech, occupational, and physical therapist once per week, each for 1 hour.

I was originally very worried about early intervention billing our insurance. It used to be optional to use your insurance to pay for EI, but that recently changed in the last two months. It is now mandatory that developmental pathways (EI in Colorado) must TRY to bill the insurance companies. I had Laura do some research, and she found that Cigna (our insurance) was one of seven that had a large trust fund set up. They will indeed cover the cost, however, it will NOT affect Logan's lifetime maximum! (Currently 1 million) I was concerned because Logan will need a minimum of one open-heart surgery, as well as ALOT of therapy. He could quickly reach this maximum if the state billed him for these services. However, the way Cigna has it set up, this treatment will not affect his yearly maximum, and at that rate will not even cost us a copay!

Here's a great shot of the boys with Grandpa!
Also, Gruncle Rand and Graunt Bette came out to visit us from Cour de Lane Idaho! It was a pleasure to have them out for a few days! We also got to see our Cuzn Katie and her husband Randy P!

Logan's next cardiologist appointment is on 7/30. At that point we'll be taking another echo cardiogram, so please pray specifically that his pulmonary artery is growing!

As always, thanks for your interest and your prayers! We'll give you another update after the 30th!

2009-07-10T14:12:00.000-07:00

Logan with Grandpa and Grandma
Hanging out with Grammie and Auntie Ash

Yesterday we took Logan to the Cardiologist. He is up to 8 lbs, 5 ozs!!! What a little eater! Kireta is doing a great job at feeding him every 3 hours, although we now allow a 5 hour window for him to sleep at during the night. His oxygen continued to remain high, at 88. (Remember, if it gets to the 60-70s range, we'll need to do the surgery early). They performed another echo-cardiogram and found his pressure gradiant in the pulmonary artery to be 64%. This is also a good sign, as he was born at 60% (The higher this number goes, the lower his oxygen will go, so they pretty much go hand-in-hand.) The only troubling sign was that his pulmonary artery did not grow as Logan has grown. In fact, it has remained the same at 6mm. Please pray that this grows as it will determine whether or not they are able to do the valve sparring technique during surgery, thus (hopefully) requiring only one surgery. (If not, the transannular patch will be used and he'll need 2-3 surgeries). That being said, Dr Carrie doesn't need to see him for another month, so that's an encouraging sign:) For now, however, we're thankful that his oxygen remains high, he's a healthy weight, his coloring looks great, and that he's yet to have a "tet" spell. Also, his muscle tone is great! He is so strong! This will help him with his motor-skill development.

This week we made contact with a number of down-syndrome groups. We are in the process of setting up early-intervention, which is a free state program to help Logan develop early on. Depending on his needs, he can get a Speech, Physical, and/or Occupational therapist on hour per week, free of charge. They will come directly to our home, which will be a huge benefit! We'll know what Logan needs in the next few weeks, and we'll keep everyone posted!

This week we also contacted one of Lisa's good friends, Michelle Kry. Michelle had two beautiful twin boys, now 14, who both have down syndrome. She will be visiting this Saturday with her husband, Kelly. Michelle has also put us in touch with the Mile High Down Syndrome League (of which her husband was president a few years ago). In the next few weeks we'll be in touch with support groups, etc, that will really help Kireta and I understand as much as possible about DS, as well as the best ways to educate and raise Logan.

I'd like to share a poem that we first saw in the doctor's office, and then later in many books. It's called "Welcome to Holland" by Emily Kingsley

I am often asked to describe the experience of raising a child with a disability--to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"HOLLAND?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guide books. And you must meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

Thanks again to all who care enough to read about our Little Logan! Your thoughts and prayers do work, please keep it up! That's all for now, we'll keep you posted!

2009-06-26T19:41:00.000-07:00

The past three weeks have been quite a roller coaster of emotions for our new family:) So let me start at the beginning, and bring everyone up-to-date. About six hours after Logan was born, he was moved to the NICU (Neonatal Intensive Care Unit) at Parker Adventist Hospital. A wonderful nurse, Emily, discovered that Logan had a slight heart murmur as well as some low O2 levels. They wanted to put him on some oxygen, and also run a few tests on Logan.

At first they ran a chest x-ray which showed some fluid in the lungs. Now, because Logan was born via C-section, this can be normal due to the lack of coming through the birth canal. We crossed our fingers and hoped for the best. The next day the pediatrician in the NICU wanted to run an echo-cardiogram which is essentially an ultrasound of the heart. On Friday we learned of some life-altering health concerns that our brave new son would have to endure.

The first diagnosis was that Logan had a severe congenital heart defect known as tetraolgy of fallot. This particular disorder has four key features. The first is a ventricular septal defect (VSD) which is a hole between the bottom two chambers of the heart. The second is pulmonary stenosis which is an obstruction (via constriction) of the right ventricle of the heart to the lungs. These two are the most major and will require surgical attention. The other two items are minor, and need no correction, but are as follows: the aorta lies directly over the VSD, and the right ventricle will develop a thickened muscle due to having to work harder to supply the lungs with oxygen.

Unfortunately, this condition will require Logan to go through at least one open-heart surgery. However, there is good news. He is showing incredible resilience in his Oxygen levels, and he is growing like a weed! He is currently up to 7 lbs 4 ozs, and he's 19.5 inches long! This is an incredible growth rate, and he will need to continue to grow to fare better with the surgery. Currently his O2 levels are in the high 80's. The surgery ideally will be done between 4-8 months of age, the older the better. However, it's a balance of time and risk, as his oxygen levels will continue to fall as his pulmonary artery becomes further constricted. (This happens by the artery not growing at the same rate as the heart and also by a small muscle underneath the artery that will grow bigger as his heart has to pump harder to get oxygen). So really if his O2 levels fall to the low 70's or high 60's, then they will need to take Logan in sooner, but at Logan's current rate, that doesn't appear to be likely.

Now if Logan does make it to the 4-8 month mark, he has a 50/50 shot at only having to do this surgery once! Please pray for this! It is called a valve sparring technique, and they will essentially "widen" the pulmonary artery. They use a tool called a "dialator" which will allow Logan to only go through this whole process once. If they are unable to use this technique, then they will do what they have done for decades and insert a metal shunt (called a transannualer patch) into the pulmonary artery. This will require a second open-heart surgery between the ages of 3-14 (this age varies tremendously patient to patient). They won't be able to tell us if they are able to do the valve sparring technique until they are in the middle of the surgery. Regardless of which technique they will use, they will be able to correct the VSD using Gortex to patch up the hole, and the other two problems will self-correct with no intervention.

Tetralogy, while severe, is relatively common. It happens in 1/2000 kids. This gives us hope because the chief surgeon at Children's hospital has done this surgery many times over. (By the way, we transferred everything up to Children's hospital in East Aurora, and they're wonderful).
Because of this heart condition, Logan has the potential to get "Tet" spells where his whole body will become blue (cyanosis) when he becomes angry. So let's just say we have the perfect excuse to spoil our little Logan! To date, he has NOT had any tet spells, and his color looks very good. The cardiologist is fantastic, and she is very encouraged by his growth and O2 levels.

On Friday, June 5th, we also got the blood-work back from the Mayo clinic. It was then that we were informed that Logan has Trisomy 21, most commonly known as Down Syndrome. This was quite a shock to Kireta and I, as nothing had shown up in any ultrasounds, etc. However, we are taking the diagnosis with stride and are learning as much as we can about the disease. Our close friends and family are all notified, as well as our church. We have yet to contact any support groups, although they are numerous, and we plan on doing so shortly.

If you're reading this for the first time, you might be surprised to learn that Logan has Down Syndrome (DS). His features are quite mild, and he displays only a few of the traits that DS patients usually show. Unfortunately, there is no corrolation between the physical features of DS and cognitive ability. There is a huge range of severity levels in DS and we just won't know until time passes how severe his cognitive disability is. However, Logan is displaying some very positive signs that should help in his development. For one, his tongue does not protrude, which hopefully should help in his speech therapy. Also, his muscle tone is fantastic, which is rare for kids with DS, especially so if they have a congential heart-defect. His hearing is presently very good, and he is extremely alert and follows the direction of your voice. All of these are very positive signs.

If I might, I'd like to share a few things about DS that might shed some light on this disease. First of all, DS happens at conception, the moment the sperm and egg divide cells. This is not caused be lack of vitamins, alcohol, caffeine, etc. It is congenital, meaning that neither Kireta or I are carriers of the disease, but that anyone can produce offspring with DS. Kireta is 30 years old, which is fairly young. However, she had a 1/937 chance of having a child with DS. By age 35, this risk increases to 1:352, and at age 40, 1:25. 1 in every 733 children are born with DS. And you might also be surprised to learn that 80% of DS kids are born to mothers UNDER the age of 35.

Logan has Trisomy 21, or nondisjunction, which is the most common type of DS (95%). This simply means that there was a failure of one pair of chromosomes to separate evenly during meiosis. Logan ended up having 47 chromosomes, instead of the typical 46, and in particular he has 3 of the number 21 chromosome (thus trisomy 21).

The mortality rate for DS patients has increased dramatically over the years. While once as low as 9 years in the 1920s, patients have an average life-span of mid sixties today. This is primarily due to an increase in medical science, as well as early-intervention, inclusion, and a whole lot of love! DS kids are prone to a myriad of health problems, but knowing what to look for to catch things early will help Logan tremendously. 60% of DS kids are born with a congenital heart-defects. They have many issues with vision, hearing, sinus issues, motor-skills, speech and other areas of development. Generally speaking, we can expect Logan to progress at 1/2 to 2/3 the rate of a normal child. But take heart! There has been no better time to have a child with DS! Logan is protected by so many laws, the biggest of which is a right to education! He will be involved with early intervention, a service which provides a whole team of dedicated specialists, including speech therapists, physical therapists, and occupational therapists. This is free from the state until the age of 3. Afterwards, he will continue to have a whole team on his side! We will continue the therapy even into school, and Logan will be included in a regular public school with Noah. Of course, he will have to attend some special education classes, but he will be integrated as much as possible into the mainstream. This is extremely important for Logan's development! Many children with DS have graduated high school, and some have gone through college! DS children have what is called an Individualized Education Program (IEP) that lets them custom build their high school curriculum to help them succeed in independent living. Many are living independently, holding a job, going out with their friends and enjoying activities such as dancing, movies, camping, traveling, etc! Our expectations remain high for Little Logan, and I know with all of your support and prayers, he will do quite well!
If you are interested in learning more about DS, I encourage you to read an excellent book, "BABIES WITH DOWN SYNDROME: A NEW PARENT'S GUIDE" and make sure to get the most up-to-date edition (currently 2008). If you are a family member of Logan's, this book will answer all of your questions, and really give you some comfort about this disease. It truly is an up-lifting book, and it was recommended to us by our pediatrician.

That's all for this post. Sorry, it's a book's worth in and of itself, but there's alot to digest. Stay tuned for more info!

2009-06-14T09:51:00.000-07:00

Logan Christopher was born at 8:08 am on June 3rd. He was almost as long as Noah, but a bit lighter at 18.5 inches and 5 lbs 13 ozs.