Happy Birthday Ashlyn

 Ashlyn is a big 6 years old!  I can't believe how fast she is growing up.  She was up bright and early to see what birthday surprises we had in store for her.  I didn't get a picure of the decorations, but I had streamers, balloons and Happy Birthday signs for her.  She was thrilled.  I LOVE making birthdays a big deal- after all that is the only holiday that you don't have to share!

Her favorite candy bars are Kit Kats so Logan was happy to get those for her.  She thought it was so silly when I said Logan tasted them and decided that is what he would get her.  Logan loves to lick everything!

A new shirt from mom (mom's always get stuck giving the boring gifts)! 

Dad road in on the scooter so he got the credit for the "cool" gift!

A My Little Pony Ferris Wheel from Tanner

(I think he picked that out partially for him)!

We were out riding her new scooter before 8am that morning, and she road it ALL day!  She was so excited to have a scooter to ride to school.  She is really coordinated on it too. 

She spent the morning playing outside and then I took her and two friends to Chick-fil-A for lunch before school.  I think I might have made an enemy with her teacher though when I let her pick the fun-dips for the treat to share with her class!  She had a primary activity right after school so we decided to do her party on Friday with her friends.  Our deal is she gets a "friend" party every other year.... I am now thinking it might need to be every 3 years- they are a lot of work! 

Ashlyn decided after changing her mind a million times that she wanted a Tinker Bell Party.  The best thing I did was have someone else make the cake!

We made fairy wands (pirate swords for the boys).

Played Pin the Star on the Wand.  (This was so funny to watch)

Went on a treasure hunt for her treasures (presents).

Had a lot of giggling, screaming and laughing!  She has such a great group of friends.

McDonalds Chicken Nuggets for dinner was a HUGE hit- I think even more so than pizza.

The Birthday Girl (have you heard the new version of Happy Birthday?  Something about cha cha cha ooh la la- I am apparently not up on grade school Happy Birthday lyrics)

Took a few tries to blow out the candles, but she finally got them!

Chaos!

Ashlyn is such a great kid.  I hope when she is older she forgives me as her mother for all the mistakes I know I am making in raising her.  Being the oldest has got to be tough, but she handles it so well.  She is such a great helper and is so responsible.

Some things about Ashlyn:

She is a social butterfly and loves to talk to anyone- kids or adults.  The other morning I had her take Tanner to a friends house and after a few minutes I started getting worried when she wasn't home.  I finally walked down the street to find her and she was on the porch talking the mom's ear off!  She can never miss a social gathering.  When other kids on the street are out riding their bikes, she just has to join them.  She calls it the bike crowd.

She LOVES school- this goes along with her being social.  She is learning to read, and doing a great job of it, but she doesn't love it yet.  I have to force her to practice.  I hope when she gets to be able to read books she enjoys more she will love it.

Ashlyn just started taking piano lessons and is doing such a good job witht that.

She is an awesome big sister to both Tanner and Logan.  She can calm Logan down when he is crying, and she is always helping Tanner out with things.

She is a drama queen, and can think of an excuse for anything!

She is ALL girl, and I love her to pieces. 

Happy Birthday Ashlyn

A change in plans

Brad got a call from Logan’s Cardiologist today (my line was busy…. Anyone surprised?). After talking things over with his surgeon and some other doctors they want to bring Logan in for a Cardiac Cath. They want to make sure they aren’t missing anything. I feel better about this and hope we will be able to get some answers. It seems crazy to think we have to be concerned over Logan doing so well, but you can never be too careful. One thing I have learned when it comes to the heart is that you are not just treating defects; a lot of times you are taking steps to prevent further damage elsewhere. Example: His PA band doesn’t really help his heart condition it helps protect his lungs from developing Pulmonary Hypertension- a condition that his CHD would create without treatment. So we need to make sure that there aren’t other things going on in Logan’s body to compensate for his heart defect. The body is AMAZING and has ways of making up the difference when an organ can’t do its job just right.  I guess sometimes that can be a good thing, but isn't ideal as it usually causes other problems over time.   

The hospital will call me on Monday to schedule the Cath, so more news to come I guess.

The Heart Rollercoaster

We just got back from another visit with Logan’s Cardiologist. Now all I want to do is crash and sleep. I have had so much anxiety leading up to this appointment that I feel like I haven’t slept in days. With how the last appointment went I was expecting them to schedule his next surgery today, but we are back to the, “Let’s just watch him again for the next month and see how he does.” I really think Logan is challenging every cause and effect scenario with heart conditions. The doctors keep telling us that with his anatomy we should be seeing “X.” Well, we aren’t seeing “X.” Logan is progressing rather than regressing. Is there something we are missing or is he just one tough kiddo? I have always said he was going to be my little miracle baby- maybe that is the case! Whatever the reason, Logan is really good at stumping the doctors.

If you know Brad, you know that he researches the heck out of EVERYTHING. If he is going to buy something he will research it forever before making a decision. Logan’s heart condition is no different. Brad has probably read more about it than his doctors (okay that might be pushing it a little), but he has read a lot. Brad had questions today for the doctor that the doctor hadn’t even thought about. I left the appointment glad that everything seemed well, but still a little uneasy that they can’t explain why Logan’s pressure gradient across his band can be at a 95 and his oxygen saturation levels are climbing not dropping- like every other PA band case. Any heart mom would jump for joy at the news that her baby’s saturation levels were at 98, but it is alarming that the pressure is so high across the band. When you touch Logan’s chest it literally feels like his heart is going to beat out of his chest. Yesterday Tanner was playing with Logan on my bed and he had his hand on Logan’s chest. I watched him look Logan over with a puzzled expression and he says to me, “Mom, Logan’s heart tells me it is broken.” Even Tanner can feel the pressure in there.

So I don’t know if I should feel elated today that my baby is growing so well and really showing no signs of heart failure, or if I should be concerned. Either way this is definitely a rollercoaster and we are holding on for whatever the ride may be.

Heart Walk

A "heart" friend of mine introduced me to an online support group called Intermountain Healing Hearts.  This is a group of heart parents and heart patients with Primary Childrens.  Through this group we have been able to find families with babies that have a similar diagnosis to Logan.  We are also able to hear other's experiences with the doctors and surgeons at PCMC.  It always comforting to not feel alone in this heart journey.

This group put together a heart walk to raise awareness for CHD.  It was heart warming to see all the families come together to support their loved ones with CHD.

Our kids were troopers.  We brought the wagon to pull them in, but when the walk started they both decided they wanted to walk the whole way (1 mile).

We were a little on the slow side for Ashlyn so she would run ahead and roll down a hill, or strike a pose waiting for me to get there with the camera.

Little Logan had no idea this party was even for him!

I think I might send this picture out for Valentine's Day!  I love that you can read the sucker he is eating!

This is a group picture with all those with a CHD.  There were adults, kids and babies.  Seeing the adults always gives me hope for Logan.  There is an LDS composer Paul Cardall that is a CHD survivor.  He had a similar heart condition to Logan, and just had a heart transplant last year at age 36.  I find it kind of ironic that we were playing Paul Cardall music for Logan before we even knew Paul's heart story.   

 

Can you pick my little red head out of the crowd???  There were so many little red headed boys with CHD.  I am wondering if they mistook the heart line in heaven for the hair line!

The most humbling part of the morning was the Angel Ceremony.  This is where they honored all those in the goup that lost a loved one to CHD.  A butterfly was given to every "Angel" family and it was beautiful when they let them go.  The butterflies stayed around the park for quite awhile.  It was interesting to watch the kids with the butterflies.  They loved to chase them and watch them, but every kid treated the butterflies with so much tenderness. 

We lost Tanner for a minute when he went chasing after one of the butterflies!

Have I mentioned enough what an incredible person I am married to?  Brad is the BEST dad I could ever dream of for my kids.  

Through this group I was able to find Angee and Severin.  Up until now we had just been chating through email and reading each other's blogs, but we were finally able to meet in person.  Severin was also born with HRHS.  We were able to talk with their family for awhile.  It was so nice to have someone understand the different things you are feeling, and also be able to understand the heart language.  As great of support as our families and friends are, they have no idea what we are talking about when we say they need the Glenn and Fontan surgery!

Logan and Severin our heart warriors!  Maybe we can time their next surgery to be at the same time so we have some company in the hospital!