Aortopexy

Quick update. No pictures.

We went to see our general surgeon today. As always, I was composing my thank you letter to him in my head as I got KP ready to go to the appointment. Whenever he is doing particularly well with his dilations, I always compose this letter to our surgeon in my head with the hopes that he will tell us "well done" and decide to see us only as we see fit.

I planned to pack up all of the dilators and take them with us so that I could turn them into him. We were running late, so I didn't have a chance to pack them up. That should have been my first sign. As we were walking up to the doors, I was thinking about how I would laugh and tell the doctor about how I had meant to pack them all up, but left them at home, but I would drop them by later on in the week. You know, since we would not be seeing him again.

Not so fast.

KP did not burst into tears at the sight of him like he usually does. He did not like being checked (would you?), but he got over it quickly. The doctor was pleased with his progress and said that he could see a marked improvement over last month....

...but thinks that we should continue the dilations at the same frequency for a bit longer to make sure that the scar tissue does not reassert itself and begin closing things up again. :(

And then...

We scheduled an aortopexy for next week.

What is an aortopexy you ask? An aortopexy involves stitching KP's aorta to his sternum. Yes, ladies and gentlemen. We are stitching KP's aorta to his sternum.

Why would we do such a thing? The aorta is attached to the trachea, and by stitching it to KP's sternum, it allows it to create some space of its own that it does not have to share with the esophagus. The trachea does not like to share space, and this will give it some "breathing room". HA! I couldn't resist.

Anyhow. Happy Cinco de Mayo, folks. KP will be going in for surgery at 9am. We go in for pre-op on the 4th, and then surgery on the 5th. He will be going straight to the PICU. Our hopes are that he will be able to make it without a chest tube, but he is KP, so....

It is expected that he may remain in the hospital for a couple of days. Hopefully just one night in the PICU, and then on to the general floor. I'm actually okay with being discharged directly from the PICU, because I actually get some sanity when he is there, but I'm not sure that is in the cards either.

I know that I have been glib in this post, but you know how my defense mechanisms work, and right now they are at their highest. I am scared out of my mind about this procedure. Many of you know that I have been putting this exact procedure off since I first heard about it when he was 3 months old. We put him on a CPAP, we took out his tonsils and his adenoids, and nothing is helping. So, here we are. And this one is a doozy. Don't let me dance around this in such a way that I have not made that clear. This one is serious, folks. And I am scared.

For all of you that do, please continue to pray for us. We need it more than ever.

xoxo

Margot

To the Zoo

Yesterday we made our way to the Dallas Zoo. Our original intent was to ride the DART rail from our house to the zoo. The DART rail drops off right at the entrance of the zoo, and you don't have to pay for parking (or deal with Dallas traffic). However, we only made it as far as Cityplace before we decided that maybe KP just wasn't ready to ride the rail just yet. He kept wanting to run around while it was moving which would have been a very bad thing. So, we went one station back, and I left KP and Dylan at Mockingbird Station to play outside while I went back to get the van and pick them up.

KP was so happy to be back in the car, and not on the train.

Once we finally made it to the Zoo, we went straight to the Children's Zoo. I haven't been to the zoo since I was in high school, so a LOT has changed since then. Also, I sure wasn't interested in the children's part of the zoo then, so it was worth checking out now.

They have a great little stream that kids can play in. There were a bunch of kids running around in swimsuits just getting soaked and having a blast even in the less than stellar weather that we had yesterday.

We checked out the Discovery House where KP found a tree that he liked to hide in, and went to The Farm where there were horses, rabbits, guinea pigs, and actual pigs. KP found the sink and repeatedly washed his hands...ocd at its best. :)

Outside of The Farm, there was a little lamb statue the KP decided was just his size, and perfect for riding.

We tried putting him in a saddle earlier, and he was very uninterested, so it was nice to see that he found something "his size". :)

Then it was off to the Underzone. KP and Dylan went crawling around discovering underground habitats...and who knows what else they picked up from inside that tunnel. Dylan came out begging for hand sanitizer. :)

KP also had fun discovering the Koi pond. We didn't let him play with them at the Japanese Gardens, so we thought he would have fun with them at the Zoo...that kept him entertained for about 30 seconds.

After the Children's Zoo, we did a quick tour of Zoo North. As always, we were running behind yesterday, and the DART detour didn't help any, so we decided to only hit half of the zoo, and chose Zoo North because it was right by the Children's Zoo.

We visited the monkeys first, and wouldn't you know, the very first monkey had a unique greeting for us.

We made it through the monkeys, and then went on to visit some of the larger animals - tigers, giraffes, and elephants.

We also got to see where the butterflies will be starting next weekend. It looks like it will be a nice little place. KP loves butterflies, so we are looking forward to bringing him back there.

We went to see the reptiles, because of course, every little boy should be fascinated by reptiles. He wasn't. But maybe he'll grow into it. :) Mommy and Daddy were sure interested, though.

As always, we had a fun filled day. On our way out, we bought a membership that gives us free admission and parking for a year. I definitely think we will be coming back over the summer so that KP can burn off some of his pent up energy in the stream. :)

After we left the zoo, we stopped by Grandad Lynn and Grandma Sheri's to say hi and burn off some extra KP energy. He got to run around in the backyard and play with shovels and rocks. :) He even gave the tractor a hug.

Fun times. Next Sunday we're thinking of checking out the Cottonwood Arts Festival. The park is fairly small, and on a typical good-weather weekend day it is packed, so I'm not quite sure how successful this will be, but I figure it is worth a shot...unless anyone has any better ideas. Maybe we'll go back to the zoo again for the opening weekend of the butterflies.

xoxo

Margot

Fort Worth Botanical Gardens

To continue...

Last Sunday, we went to the Fort Worth Botanical Gardens. They were having their Spring Festival at the Japanese Gardens. We got a late start, but KP was well rested and behaved himself on the ride out there.



We only got to spend about an hour inside the Japanese Gardens, but we had a great time. KP loved the drums! You could hear them through the entire garden, and then we sat down to watch them play, and KP started clapping with everyone else when they were done. :) That is a new skill of his.

We used the Ergo Baby Carrier in earnest for the first time. We have tried it a few times at the grocery store before, but there have always been too many distractions. At the Gardens, KP stayed in it for over an hour without fussing. He even stayed in it when we sat down to watch the drummers. The only time he tried to get out was when the fish started fighting over food - I think he just wanted to play with them. :) This makes me hopeful for our solo flight out to California at the end of May. I'm really counting on him being okay in the carrier.

After we were done with the Japanese Gardens, we toured around the Botanical Gardens and let KP run around a bit to burn off some of his energy since he was such a good boy while we were inside.















Since we ran late getting to the festival, we didn't have a chance to eat while we were there. We figured while we were out and about, we would try a new restaurant on that side of town. This led to a bit of an adventure trying to find a restaurant in that part of Ft. Worth that was open at 6:00 on a Sunday. We finally found Hui Chan Sushi, which we had actually seen at the festival.

KP decided that he wanted to try his hand at using chopsticks, so he stole Dylan's and went to town.




Okay, sure they were upside down, but still a pretty neat trick for a 19-month old. :) Our waitress saw him struggling, and brought him a pair of cheater chopsticks. He needed help with using those, and he did not think they were nearly as much fun! What can I say? He's an independent little guy, and I think he could tell that they were the "easy" way out. :)






Our Sunday outings are becoming more and more fun. And, the more that we do them, the better KP is behaving, which makes us more excited to do them some more. We are hoping to get out to the Dallas Zoo tomorrow, but we also need to get some Spring cleaning done, and it looks like it may rain. We'll see what happens. Either way, I'm sure we'll make it into a fun day for the whole family. :)

xoxo
Margot

Easter

I realized that I have not updated in two weeks, which is not strange in and of itself. As you know, I often go weeks, sometimes months without updating. But it is bad this time because we actually have had a lot going on and I have lots of pictures. I am only putting a few pictures on here, but there are many, many more on facebook. I have added a link to my facebook on the left. Included are some recent pictures that have been uploaded. Please feel free to request me as a friend and receive regular updates with photos via facebook. Also, there is an automatic feed from this blog directly into my notes on facebook, so you can easily follow us from just one place. At this point, I am keeping this blog active because it makes it easier to print whenever I get around to updating KP's book, and I know that everyone is not willing to join facebook, but still wants to know what is going on with our little man. We greatly appreciate your support.

So, on with the updates. As you know, Bachan came in town right before Easter. We planned a wonderful Easter dinner, and she and I drove to Grandview to pick up organic ham, lamb, and sausage (and some more dog bones for Goose). I have to tell you, this is the second order that we have placed through Burgundy Pasture Beef. We had the last order delivered to our house, and the meat was wonderful, and the delivery was as promised. We had just ordered some ground beef for KP, and some organs and bones for Goose in that order since we were just trying them out. Well, this time we got a leg of lamb, a nice sized pasture-fed ham, and some sausage. I was very pleased with the quality of the meat, and feel that we have now sampled a good variety of what they have to offer. As many of you know, I only order online because I don't actually like talking to real people, but I have talked to them a couple of times, the first to confirm the delivery, and the second to confirm that our order would be ready for pick-up. Both times, they were super friendly and helpful. I am a big supporter of eating organic and buying local, and so I feel that buying from places like this is important. So, if you find yourself interested, but not quite sure about the 10lb minimum (for delivery), let me know what you would like, and I will be more than happy to add it to our next order.

On Saturday, we packed everyone up in the car and drove out to Granbury to see Mamaw, Papaw, Uncle Josh, Uncle Jam Jam and Josiah. Yep, pretty full house out there in Granbury. We stayed at The Plantation Inn out of everyone's way. :)









Unfortunately, Uncle Jam Jam had to work most of the weekend, but we did get to spend some time with Uncle Josh and Cousin Josiah.




We went out on the boat, and KP got to drive. :) I stood up from taking pictures of KP and Papaw and realized that the boat was traveling in circles in the middle of the lake -- because KP was the only one steering! :) He had SO much fun with that.




Sunday was forecasted to be a dreary day, and Uncle Jam Jam had to work that afternoon, so we had our Easter Egg Hunt inside. It was so much fun! KP and Josiah did such a good job finding their eggs that their dads had hidden...just a note to you moms out there -- don't let the dads hide the eggs.



Anyhow, by the end of the hunt, Josiah figured out that there was food inside the eggs, and KP got bored and started dumping all of his eggs into Josiah's basket -- which turned out to be just fine with Josiah. :)





We also gave them some books and bubbles for Easter, and the boys had fun playing with them. Josiah is a big boy and was able to blow lots of bubbles. KP kept putting the wand up to his nose and getting mad because nothing was happening. :) We'll work on that. He just doesn't get the concept of blowing yet. :)









Then, on Sunday afternoon, we got a real treat, and Uncle Chris and Aunt Edith were able to come out for dinner. They brought their brand new Maltese, Keysa, which is the most adorable little puppy you have ever seen. And so sweet, too. So, the boys got to play with her, too. They all shared a love of toy cars. :)








Dinner was delicious. Even the boys (big and small) tried some of the lamb. The little ones liked it, I'm not sure about the big ones. :) It was so nice being able to feed KP directly from the table like we do at home since we planned the meal based on what foods he could eat and made sure that everything was organic. It really added to the family atmosphere (and it made for less tantrums on his part). :)

We were able to get a family picture before everyone had to go home, and all in all, we had a great Easter weekend.



xoxo
Margot

Whew...

We've had a busy weekend here at Casa Aishiteru.

We were planning on going to the Arboretum on Sunday afternoon because this is the last weekend that we would be able to see Dallas Blooms (since we'll be in Granbury next weekend). However, I didn't check the weather before we were on our way. I just assumed that the day was going to warm up like every other day did last week. I was wrong and it actually cooled off from the morning and the wind came blowing in. So, we had a pleasant change of plans. :)

We got to go visit Grandad and Grandma, and see Grandad's new office which is rather spiffy. :)

Then we went to Aunt Cindy's beautiful garden to take some pictures. We have realized of late that we have fallen down on taking pictures of our handsome little man, and thought it was about time that we rectify that.

So, without any further delay, here are our April pictures. Sorry about the slideshow, there are just too many. As always, you can click on the slideshow to see the pictures one at a time.

We had our mini doctor marathon today. KP had his delayed 18-month checkup (he was sick at 18-months, so we pushed it to 19). He is back on his growth arc again. 30th percentile and height/weight proportionate. Yay. :) (of course his big head is still 56th percentile, but at least that's down from 86th where it used to hang out.) His doctor is extremely impressed with his progress. I love our pediatrician, by the way. We purposely selected a young pediatrician, because we wanted someone that would grow with our family, and not be in danger of them retiring partway through our lives. We have been so blessed. KP loves him, and he is so knowledgeable about all things KP. :) And, he is laid back like us, and understands things like why we have discontinued feeding therapy for right now. It is nice to have a doctor like that. Actually, we have been blessed with most of our doctors being like that. They understand that KP has been through a lot and don't try to subject him to things for a "maybe".

Anyhow, then it was off to the ear doctor. We got a clean bill of health there. He said his ears look great, and send us over to see the audiologist for a follow up from having the tubes put in. We did a behavioral test this time instead of an ABR, and it looks like we are back to normal in the right ear. Whew. It was only the fluid that was causing the loss that we saw on the last ABR. He is still deaf as can be in the left ear, but at least the right ear is behaving as it should now.

We actually had a very nice day today. Which is not always the case when we have so many doctor appointments. Usually, KP gets cranky or restless. But he conducted himself like a genuine big boy all day today and I was very proud of him.

KP's potty doll came in today. His name is Paul. :) And already I can see the benefit of such a doll and I wonder why I didn't think of doing this before. As soon as I took him out of the box, I took him and his potty into the bathroom and showed KP, "see, Paul is sitting on his potty". So, KP sat on his...with clothes on. Hey, we're just working on concepts right now. So, when KP tried to get up, I told him "hang on, Paul isn't done yet". And he sat back down. Then, when I tried to pick Paul up, KP pushed him back down. I guess he wasn't done yet. :) When they were done, KP carried Paul up his stepstool to the sink and washed and dried Paul's hands (and then I washed his, of course). :) It has been so cute. Naptime was a breeze with Paul. So, yes, my little man has a doll. Get over it. :)

Bachan is arriving on Wednesday, as well as Josiah. We're heading to Grandview on Friday to pick up the meat for Easter, and then to Granbury on Saturday. KP will get to participate in his first Easter egg hunt, and we are super excited! I think we need to buy more memory before next weekend...especially since we used up 2G just in Cindy's backyard for an hour. :)

xoxo

Margot