big brother

I'm not sure that I've come right out & said it on this blog, but Joshua's getting a little brother come July! Today he walked up to me, lifted up my shirt & slapped a piece of cheddar cheese on my belly & said "baby eat!"
He's pretty excited about all this baby business...we'll see how he feels when he realizes the baby is here to stay! But for now I'm cherishing these last weeks that he's my baby. Who am I kidding? He'll always be my baby!

little outdoor's man

Last weekend Jon & Josh went on a father/son camp out together & had so much fun...

that they decided we'd all go camping this weekend!

Because he is now a seasoned pro...he showed us the ropes!

I think if he had his way we'd move out of our house & into the great outdoors (good thing mom has the final say)!

fun in the sun...

Some pictures of my silly boy playing at the park. As I've said before this kid is a climber, not to mention fearless. Only one thing in life strikes fear in him - that is the sight of me leaving the room without him. Seriously.

Of course Josh wasn't the only one having fun!!!

lover boy? not so much!

turned into this:

Before you feel too bad for Josh you should know that the "hug" in the first picture wasn't a hug at all. Josh was all over Callie like a cheap suit going for the take down. The wrestling matches around this place are in good fun. Well, in most cases:)

Real affection? Now that's what sets him off!

Swiper the dog...

If you've ever watched Dora, hopefully this story will make sense.
Today Abby & Callie were watching Dora & Josh was watching along with them. He usually doesn't pay any attention, but today he was interested.
When Dora stopped Swiper (as she always does) Swiper said the usual "Awwww maaaan!"
Josh loved it & looked up at me and said "Momma..."
I asked him "What Joshie?"
He said "Dog, awwww maaaan!"
I thought it was so cute & Abby said, "But mom Swiper is a fox you know." Of course I knew that, but there is something adorable about him calling Swiper a dog, don't you think?

little boy + smart + good climber = trouble

I'm not good at math, but it all adds up in this case.
Little Josh has been honing his climbing skills. He is pretty smart about the way he does it too.

Step 1: retrieve the time out chair
Step 2: retrieve a stool
Step 3: create a stair case (of sorts)

Step 4: free reign over any and everything
Here is what I documented today. This takes place his every waking hour every day.

Getting craisins out of the cupboard. Help yourself Josh.

And pictured below - enjoying his hard earned craisins (on top of the counter).

There is nothing safe about this bad habit. But - this is what happens when I move his handy dandy chair out of reach...

Trouble.

I ask myself what would happen if I put the chair on top of the hutch...I'm not willing to risk it.

More owies :(

Poor little guy had an appointment with the pediatrician today. No big deal right? Except for the fact that he had to get 3 shots. The poor kid is fresh off the synergist shot season (which included 2 shots a month for the past 6 months) & of course he was due for 3 vaccines today. He was rightfully upset the entire appointment, crying "Owie, owie." It's heartbreaking. He also cries out for Abby, his oldest sister, also heartbreaking. I wish for once he could visit a doctor without undergoing pain. This is picture sums up his mood the rest of the day.

Whenever he'd see someone new afterward he'd point to his thighs & say "owie, owie" he just couldn't shake it off today. Normally he gets over it quickly, but he's had it with shots. I have too by the way.

On the other hand, he sure is a good helper in the kitchen...always happy to lend a hand!

18 month

Stats:

Weight 23lbs 5oz - 15th percentile

Height 31.75 inches - 25th percentile

Plus no murmur heard!

He's getting there...little by little.

nap time!

sometimes:)

Diaper days...

It's only April & we're already hitting the mid 90's...pretty hot.

So diaper days are back...I love my sweaty little boy!

Now we just need to invest in some sandals!

(Who knew coloring eggs could become so stressful? He took his job very seriously, he's a perfectionist!)

Ugh!

For real Josh?

(not chocolate)

My little Cowboy...

This weekend Max's Miracles invited our support group to "The Cowboy Way"...a day dedicated to families effected by CHD's. It was the most amazing day, better than Disneyland (no joke)! The day included; horse back riding, buggy rides, horse grooming, roping lessons, tons of animals to pet, bounce houses, a train ride, lunch, barrel races, a hay ride, fun, fun & more fun! The weather was beautiful, it couldn't have been a better day! We were truly spoiled by these generous people who sent each of the kids home with a cowboy hat, a horse shoe, a blue ribbon, a rope, a bandanna, candy and awesome memories! This was a day we'll never forget!

http://www.gridleyherald.com/homepage/x1098986326

18 months and going strong!

This week Joshua turned 18 months! In honor of turning 1.5 I thought I'd share a little glimpse into his world.
First and most importantly perhaps, this boy is always busy. Not a moment goes by that he isn't climbing up somewhere he shouldn't, or casing the joint for some trouble. He has become pretty cleaver in his climbing technique. If he can't muscle his way up, then he creates a set of stair out of books, blocks, dump trucks, pillows or anything else he can use as leverage. The boy likes to climb!

Another fun fact about Joshua is how much he loves his Dad. A couple of weeks back Josh realized that when I begin making dinner Jon will be home soon. Now every night when I start cooking he can be found peering out the window calling "Dada, Dada, Dada....." Those of you who know Josh know that the kid has an iron will, but can you believe that he would wait for nearly 30 minutes at a window for his dad? Distracting him is not an option. When he has something on his mind he is more determined than anyone I know to get what he wants. I am hoping that this trait can be somehow used to his benefit as he gets older:)

His vocabulary continues to grow, however "Me!" seems to get the point across in most cases. In Joshua's world "Me!" has a multitude of meanings: "I want that." "I want to play there." "Give me that food you are eating." "I want your toy." etc, etc.
Another trick Joshua is perfecting is his ability to sneak out of the house. Now that he can reach & open the doors he's always hoping we'll forget to latch the top lock & he can make a get away. No such luck yet, but he has been caught in the act several times. He just wants to be outside & luckily he has an interest in the backyard, so that is where he spends most of his day.

It has been so much fun having this little boy in our lives for the past 18 months. In the beginning he kept us on our toes due to medical issues, now he keeps us on our toes getting into trouble!

As I was sitting at Joshua's bedside after his first surgery Dr. Azakie told me that one day I wouldn't be able to keep up with Joshua. The thought of that as I sat next to his sick little body seemed impossible. Here I am 18 months later, exhausted from a long day of chasing my Joshie. What an awesome feeling!

So long OT!

Josh wasn't too happy with Abby when she stopped spinning for a picture

Yesterday officially marked the final day of OT (occupational therapy) for Joshua. It was only his second, or third session, but he no longer needs OT! He has reached every milestone that he should by 18 months & then some (he's 17 months right now). If anything he's developing too fast for my liking, I want him to be a baby forever. Way to go little buddy!

A perfect Saturday!

This weekend we were able to visit the zoo!!! We met our support group Hearts of Hope for a day of fun!
This is a picture of Joshua & his heart buddy Drew checking out the usually exciting orangutans.

Josh & his big sis goofing around...

And a group shot of Josh & both his sisters. We had so much fun & the weather couldn't have been better!

Thank you Hearts of Hope for making it a special day!

Heaven just got a little sweeter

Last night little Gracie returned to heaven. She was blessed to spend her short life with an amazing family who endlessly loves her & fought for her to the end. Their faith has been inspirational to watch and has surely uplifted many people. Please say a prayer for her parents & older siblings as they go through this difficult time. As her dad said; "Heaven just got better." I think he is right.

Read about her here.

a 3 year old + a 1 year old =

Bad news.

Say a prayer for Gracie

Those of you in the 'heart community' already know about Gracie. For those of you who don't, she and her family desperately need your prayers right now.

Gracie is 6 months younger than Joshua. She too has HLHS. Unfortunately, like so many of these HLHS kids she has had a very rough time.

She received a heart transplant yesterday that seems to be failing her. She is currently on life support. Please pray for this sweet family & their little Gracie.

This baby loves his babies!

Joshua's older sister had me swaddle this little stuffed animal for her several times today. Later in the day I saw Josh wrapping the same stuffed animal in a piece of paper, doing his best to swaddle his "baby". Such a sweetheart!

By the way, I never updated about Joshua's blood work he had done a couple of weeks ago. Everything looks great...of course the over-confident guy with the needle couldn't get a vein & eventually ended up pricking him & then squeezing the blood out for about 10 min (what's new?)...but it's over with.

Happy Valentine's Day!

Yesterday Cupid baked these delicious treats, decorated with beautiful mended-hearts he made out of fondant & then proceeded to drop them off to the Cardiology team at Kaiser. He's one heck of a baby! With that said, I don't recommend you turn your back on him, he's a sharp shooter!

Happy Valentine's Day!

I've created a monster!

Little Joshua can do no wrong in my eyes. Seriously, I find everything he does lovable. But I am the only person who feels this way I am afraid.
I made the kids some mini blueberry muffins for breakfast this morning. About a half hour after breakfast Abby walked up to the plate of muffins & screamed! She said "Someone ate all of the muffins!"

I assured her that she must be wrong because no one could have possibly eatten a dozen muffins (come on, Jon was at work). I went to see what had really happened & she was right, someone had taken a bite out of each one! I searched for evidence & found this:

He is a dickens! But really, could anyone else get mad at this boy? He's just too cute! Minutes later I heard him screaming "Momma, momma, momma!" From the front room & found this! I admit, I've created a monster! But I love my monster!

And the set of stairs he created was pretty impressive!

One year ago today...

...we walked into Joshua's ICU room see this...
That is right, one year ago today Joshua had his second open-heart surgery, the Glenn. It was a rough one for Joshua (as well as the whole family), but as soon as he was fully recovered we had a new & improved baby on our hands! We were told to expect a 7-10 day recovery...uh, not quite! 6 weeks & a pacemaker later we were home free!

In many ways it feels like the Glenn was years ago because Joshua has come so far this past year! It is unbelievable what a child is capable of in such a short time.

I was told that for every day a baby spends in the hospital, they fall 3 days behind developmentally. 12 weeks in the hospital did not slow him down a bit, what a huge blessing!

Everyone already knows this, but I'll still say it, we couldn't be prouder of our little fighter!

Way to go baby boy!

Be Aware...

Joshua 3 days old

This week is Congenital Heart Defect Awareness week. CHD's are incredibly common, however, unless you know someone with one, you probably haven't given it a second thought. This is because of the limited media exposure CHD's get. So this week, as a mother of child who was born with one the the most serious heart defects, I'll do my part in spreading awareness.

Not so fun-facts:

*CHDs are the #1 birth defect & #1 cause of infant death related to birth defects.

*1 in every 100 babies born will have a CHD

*1 in 10 of those born with a CHD will have a fatal defect.

*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

*Causes for CHDs are still being studied. It is said that both genetics and environmental factors can play a role.

*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.

*Only about 30% of the children who need a heart transplant receive one in time.

*About 40,000 units of blood are used daily & only about 5% of adults who can donate blood do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

Two years ago this week was simply the week of Valentines day. Now it is a time when I am very reflective of the journey we've been on with Joshua & his heart. Joshua spent his 3rd day of life, his heart stopped, laying on an operating table as dozens of people re-built his grape sized heart. He spent 3 of his first 6 months in the ICU. At 4 months he had his second open-heart surgery. While we have been incredibly blessed that Joshua has done so well this far, it has not been easy. He will face his third open-heart surgery within the next 2-3 years. At some point he will need a heart transplant. Help spread awareness! Heart defects don't discriminate...I certainly never would have thought that we could have a child who was less than healthy. Also please, if you are not an organ donor consider becoming one. If the thought turns you off, take a look at little Owens blog. He is in need of a new heart.

The medical world has made huge advances over the past several years, and the hope is that this will continue! With proper awareness comes proper funding of studies, research & so forth...please spread awareness!

Joshua today

Good News

The picture says it all! Joshua's heart function is great! No problems seen on the echo, the EKG looked great & his pacemaker is doing it's job (nothing at all, just back up)! What a relief and an answer to prayers.

I had an arsenal of food with me, including lollipops (thanks for the tip Gina) and lets just say we made it through the echo. There were a lot of tears, but he just laid there in my arms, didn't fight or squirm. He is such a good boy I hate to see him undergo stress, but it's over with.

Dr. Rivera (the cardiologist) called me this evening and told me that he decided that he'd like to have a full blood draw done :( because it's been a while. I thought we dodged that bullet. So I'll take him in & just pray for only one poke.

Thanks everyone for the prayers & well wishes, it feels good to know that Joshua has a place in so many hearts!

Any advice?

Joshua has an echo (ultrasound of the heart) coming up this Thursday. The anticipation always causes worry, loss of sleep, etc. for me. Really, he has been doing well lately, but I've noticed on more than one occasion over the past couple of weeks Joshua sweating (a sign that his heart is working extra hard). I also feel like he has been more pale, and bluer than usual. So Joshua's cardiologist decided it was time for a check up. I agreed.

This is the part where I need your advice...in the past Joshua has done pretty well with echos, but now that he's an expert walker there is no chance he'll lay still for an hour. It is hard for me to sit still in that room for so long, so I can't blame him. He doesn't watch movies or t.v. so that is out of the question. I may be able to distract him with food, that's his weakness. He is too young for bribes. So any other tips? I would love to hear them!

And please if you have any spare room in your nightly prayers - squeeze Josh in there!

The hope is that we'll have a good report to post come Thursday evening!

How do you know when your baby's spent too much time in the hospital?

When you watch him casually put a stethoscope around his shoulders...just like a pro, & then go about his business. It's a sure sign.

OT appointment

I'll bet you didn't know he has a serious side...

Joshua was assessed by an occupational therapist a while back to ensure that his development was on track. The results of the assessment showed that Josh was right on track for just about everything. His case worker didn't want to close his case, because he's still so young so she authorized six hours of therapy. His OT came last week and she was amazed that he had already accomplished all of the goals that we had hoped he'd accomplish by June. Because he's doing so well, we looked ahead to his 18 month milestones & the OT gave me lots of tips to help him develop these skills. We are really blessed to have a little go-getter who tries his hardest to keep up with his sisters & cousins...and he does a great job at it!

Okay, not serious for long!

Daily medications? Yikes!

I am not going to lie, one of the things that made me nervous about Joshua's condition was the fact that he'd need daily medications. Most people don't give it a second thought- sure the child cries- but they need it, so they get it no questions asked. Josh has always gotten his medicine, don't get me wrong, but it has been very hard for me, even dreadful. I hate causing him stress & discomfort, or upsetting him at all, even if it's for his own good. I am just a total softy I guess.

As much as I'd like to pretend this didn't happen; one time at a support group meeting I broke down in tears asking the other mothers for tips on giving a baby medicine. I am seriously a softy. One of the mothers asked if I had tried his medications in pill form. No, I had not. But I was willing to try anything. I put in a call to the pharmacy & had his medications in pill form by the end of the week. And since my life has been pure bliss! Seriously.

This is our daily routine:

We wake up go downstairs, I get out his pills, cut them to size & say "Time for your nummies!" Josh walks up grabs the first pill from my hand, pops it in! Then he does the same with his second pill. What a good little boy! We have the same routine at night. It is awesome. He willingly takes his "nummies" no complaints. In fact a couple of times he's walked up to the medicine cabinet & reached up calling "momma, momma" I ask "do you want your nummies?" he nods "yes" ....unbelievable! I know it was silly for me to dread giving him medicine, but I really did. I'd push it off as long as I could & just hated forcing that nasty stuff in his mouth, watch him cry, then choke, and spit out what he could. Day in and day out it took a toll on me. Thank heaven for pills!

Joshua's first year (life after the Glenn)...

Life after the Glenn has been amazing! Joshua has taken off! He's grown a lot, learned a lot & has lived a very normal life. Two weeks after being released from the hospital he no longer needed the feeding tube that had sustained his life up to this point. It was a miracle! While hospitalized he also had difficulty keeping any feedings down. Yet on the drive home from the hospital he held his food down for the first time in months, & never spit-up again since. Another miracle!

We can hardly believe that our baby's first year has come & gone! Reflecting on the year I feel so many emotions; happiness, love, relief & gratitude to name a few. But my strongest emotion is love. I love that boy so much. Everything about him amazes me. He certainly hasn't had an easy year, but you would never know it. He is as happy as can be, he is sweet, he is silly, he teases his sisters, he looks up to his daddy, he is everything a little boy should be.

It has been a year of trials, worries, fears, but most importantly smiles, laughs, and growth. We don't know what Heavenly Father has in store for Joshua. But we know he was sent to us for a purpose. It feels like it was just yesterday that I got to hold him for the first time & feel his soft little head on my cheek. The memories are all still so fresh in my mind. I have truly cherished every second that I have had with him, which I probably wouldn't have if not for his special heart. It has been by far the most challenging year of our lives, but also the most rewarding. We feel so blessed to have Joshua as our son!

The Glenn...(the short version!)

As we prepared for the Glenn we had mixed emotions. On one hand, we knew he needed this next surgery, which would make him much stronger, but we dreaded sending our baby off to the OR again. From all we had learned about other kids who have the same condition, we figured that this surgery would be much easier on all of us. We were told to expect a 7-10 day recovery. This was not the case. Much like his first open-heart surgery, this one was very hard on him. He went into surgery very weak & had a moderate tricuspid valve leak that also needed repaired to improve the function of his heart. The surgery was a success, but the anesthesiologist told us that he had a difficult job keeping Josh stable. He said that Joshua kept him on his toes, the whole time.
When we were taken back to see him after surgery it was very emotional for me to see him in that state again. But I instantly noticed that he was pink! He had been so blue leading up to the surgery, so it was nice to see the results so suddenly. But he hit every bump in the road this time around too. First he had gotten staph a infection, then his rhythm was off, then he had severe anxiety attacks, he had damage to his glads etc, etc. After nearly 5 long weeks of recovery in the PCICU, eventually he was taken back to the OR, his chest re-opened & had a pacemaker placed in him.
Then finally after 6 weeks at UCSF we were able to take him home again! So much for a 7-10 day recovery! But this time we were able to bring home a baby who was stable for the first time in his life & we couldn't wait to watch him learn & grow!