Time flies

What a year so far! Our apologies for such a lengthy time between posts.
Henry is doing fantastic! He transitioned to the Preschool room at daycare and has been learning a lot! Henry can resight his ABCs and is currently working on counting to 20. His other goal is potty training.
Over the weekend we took apart the crib and made it to a toddler bed. Thoughts prayers and positive thoughts that this transition goes well. He did pretty good night one.

Since May, Henry has been battling tonsillitis on and off. We finally got a referral back to ENT. However, they are being cautious and want to wait until his tonsils flare up again before making the decision to remove them. Since there is a concern with bleeding, the doctors are more cautious about this procedure than they were with the ear tubes last year (which, by the way, still look great)

On top of the tonsillitis we have been trying to get Henry to the cath lab. Because of all the illnesses, the cath lab kept getting pushed back. Finally after the last cardiology visit a couple of weeks ago, along with some xrays and blood work, the cath lab has been postponed until the Spring. They will be doing measurements for the next open heart surgery, the Fontan. Oh and about that blood work. Remember us talking about BNP levels? Henry’s got as high as 77,000. The results from the last test was at 348. The lowest it has ever been recorded 😊

Henry will not be followed after he turns 3 by TARC. He will be aged out of the tiny-k program. Because he is doing so well, he will most likely not be picked up by the area school program.

Henry helped choose his Halloween costume this year. His daycare will be visiting the pumpkin patch this Friday. Last year he was unable to attend due to appointments at Children’s Mercy.

Saturday we will be walking the Topeka Heart Walk. Henry and his other local area heart buddies had their picture taken for the occasion. If you are free, we would love for you to join is. The walk starts at 10am at Washburn University. It is free, but donations are welcome.

As we get closer to the next surgery, we will post more! Thank you everyone for your continued thoughts and prayers.

Happy TWO Years!

Happy New Year, everyone, and Happy 2nd Birthday, Henry!

The past two months have been quick and exhausting for all of us. As I look back, I see that we failed to give an update after Henry's ear tube surgery. Needless to say, it went well - we were home in time for lunch that day. Back at school the next day, Henry promptly caught a bug of some kind and wound up coming home and only going to day care on Veteran's Day that week. It's likely he was battling the croup, or something like it. It was probably about two weeks before he was back to acting like his normal self - but his ears were definitely not the issue!

For the next several weeks, from Thanksgiving through mid-December, we were all passing around the same bug, which eventually settled into bronchitis for Paige and I. Luckily, other than a nagging cough, Henry's been doing just fine - although he clearly needs to learn how to spit! We think that the Synagist shot has helped him, as we know RSV is one of the bugs that has passed through his classroom, and would explain why Paige and I had it a little rougher than he did.

Just before Thanksgiving, Henry sat through his best haircut yet, and was rewarded with a surprise introduction to Baby Jay! 

A couple of weeks before Christmas, we did take Henry to meet one of Santa's helpers, but he wasn't quite sure what he thought about that. 

Henry had a wonderful and busy Christmas weekend, getting to open presents four different times. Luckily, unwrapping presents is one of the key life skills Henry was taught at school! 

His great-uncle Dave came out to stay with us over the holiday. The last time he was out here, Henry was on a ventilator, so it was nice for them to finally get to properly meet. He also brought Henry some very thoughtful gifts from his great-aunt Chrissy, including her old friend, Magilla the Gorilla.

New Year's was pretty quiet around here, as I think Paige and I were finally wearing out. We had a fun day out, just the three of us for Henry's birthday, including a hot fudge brownie with ice cream. Hopefully everyone is doing well next weekend for Henry's birthday party. 

With two long holiday weekends back-to-back, we have spent more actual interactive time with Henry than we had in a long time, and he continues to amaze us. He is learning so much so quickly right now, and he is starting to use words and sentences almost overnight. This weekend he showed he can copy our words ("cookie" was the word of the day), so it's probably time for us to start paying closer attention to what we are saying! It is clear we are entering our third year, as we have noticed a bit more stubbornness and some minor tantrums. So far, Henry is clearly winning, as we are having a really hard time disciplining him with a straight face once he smiles back at us!

The trials of 2015 feel like so long ago now. Looking back, it is probably for the best that Paige and I were first-time parents. It is hard to imagine going through all of that, now that we have actually seen his personality. We don't yet know what challenges await us in 2017. We may have a better idea in a couple of months about when his Fontan surgery will be. That is going to be a completely different experience, but having seen how well he is growing and how strong he is now, I know we will be ready.