Luke's 3rd CA dilation

Luke had his 3rd CA dilation last Friday. Everything went fine, but Dr. Hill is still not sure how long it is going to take to get Luke's nose open enough to get the trach out. He wants to dilate again in July (the 25th) and see where we are then. The good news is that he is finally going to let Luke try a PMV - passy-muir valve or speaking valve. This is an attachment for the end of the trach that lets air go in through the trach, but out through the mouth and nose. This means air passes the vocal cords, so making sound is possible. If Luke is able to do this then we would move on to capping and then decannulation. It can take quite a bit of adjustment to get used to the PMV, so we will have to start very slowly at first.

Gus is Student of the Month!

Well Gus was very surprised and excited last week when he got the Student of the Month award for May. Now both boys have lovely medals to keep. We also met with their Kindergarten teacher, Mrs. LaRota, and decided that the boys should be in class together again next year. They did really well being together this year. They were always there for each other, but they played with different kids and weren't in the same groups, so they weren't dependent on each other. Being in the same class helps us as a family since it allows Rob and I to attend class events for both of them and to work with them on the same homework. And it also helps Sam and Gus have a little extra security in knowing that their brother isn't far away.



The boys also had their end of the year party and received their Kindergarten certificates. Today is their last day of Kindergarten. I will be happy to have them home again with me for the summer. I feel like I hardly get to see them anymore. But what are we going to do for the next 2 and a half months... I am sure all 3 boys will manage to keep me busy as usual.

Happy Mother's Day!

I had a really nice Mother's Day yesterday. I was surprised in the morning with several sweet gifts that Sam & Gus made for me - lots of handprints, drawings and love. We went to Nonna and Papa's and spent the day, and we all had a really nice time. I even got to take a nap after lunch, which was wonderful. Before, that would have kept me up at night, but not anymore. It was a beautiful day, so we took some photos outside.

Another tooth...

Gus lost his second tooth yesterday. It won't be long before the top two come out too and he will have a big hole in the front of his mouth. He doesn't seem to mind a bit though.

Some of our friends commented this weekend about Gus looking like Rob now. I know he has my eyes, but in photos lately I can start to see what they mean. I actually think he looks like Auntie Marjo in the top photo below. Rob says he can see Craig. Rellies, what do you think?

Hugs, kisses and playing ball

I just wanted to share one of the wonderful things Luke has been doing lately. He gets more animated all the time and lately Rob and I have gotten a special surprise. Luke has been hugging and kissing us (in a sense). He will put his arms around my neck and squeeze his hands to hold on. Rob and I both can definitely feel it is a hug. Now for kisses - Luke doesn't actually move his lips, but he has moved toward me with an open mouth for me to give him a kiss. He is a bit of a Mommy's boy too. After 3 it is only fair that one of them prefers me.

We had another wonderful experience last night. Luke played ball with us. He sat in front of me between my legs and rolled the ball back and forth with Rob. He especially liked when Rob would bounce the ball and it would hit Luke and land in his lap. (Don't get worried this is one of those new balls that is mainly holes, so it is easy for babies to pick up and hold.) We are still working on independent sitting with Luke, and this was the best he has ever done. First Luke wasn't strong enough, then he lacked balance, and lately he has had the ability, but throws himself back on purpose. Since he was occupied and had my legs as bumpers, he actually sat most of the time by himself. We can tell Luke is getting stronger all the time because he now loves to stand. He can stand by himself if he holds onto something (or someone) for balance. He even likes to dance. Something I never imagined for my little "deaf" boy...

Here is Luke standing. It looks like I am holding him, but I just have my hand behind him to catch him "just in case". He is also making this funny little noise he has been fond of lately. I think he really likes some things about having teeth.

Catching up

I know it has been a long time since I have added anything to the blog, so I have been trying to make up for that today. You will find tons of photos from Easter and several of Sam and Gus at school on their birthday in the 3 posts below. For some reason it has seemed especially hard lately to find time to keep the blog updated. But I really want to try to be better about it again because I like to keep in touch with all our family and friends. Plus the 3 Little Bees are changing so fast, that it is nice to be able to share all the things they are doing.

We had a long month in April. Luke wasn't eating well, we think because he was teething, and then he got the flu. Gus had been sick first and he ended up getting it again and we all had it at least once. Luke probably got it the worst though, spending a few days in the hospital. He had a high fever and was taking short shallow breaths so we got worried. Since he has a Central Line there is always a risk of infection and the doctors had to rule that out. They were also worried about pneumonia, but it seems his lungs just got "sticky" from having the flu and a few days of albuterol helped that go away.

Luke ended up not eating well for 3 weeks, and that always worries us. In the fall Luke weighed 14lbs. 10 ozs. (about average for a 4 month old) and he had only recently gained to just over 15lbs., so we really didn't want him to lose weight. The good news is that he didn't lose too much and is still right around 15lbs. While Luke was in the hospital we saw a nutritionist who wants us to transition Luke to a soy pediasure type drink to add more vitamins and calories. He needs to eat around 700 calories a day to gain, and he is actually doing that right now, so I hope to post about more weight gain soon. Luke's feeding issues are actually some of the most stressful issues in his care right now. Mainly because it is constant - counting every calorie, working to keep Luke from gagging and throwing up, trying to push table food, trying to transition to a cup. Feeding Luke is also constant in all the time that it takes. Sometimes it takes him an hour to eat his baby food, and then another half an hour to take a bottle, so it seems like life revolves around Luke eating. Needless to say, I will be happy when Luke moves on to table food and a cup and eats meals with the rest of us.

Happy Birthday Sam & Gus!!!

Today was Gus & Sam's 6th birthday. Now that everyone is feeling good again, we were really able to enjoy the day. Both boys got recognitions and school and were very proud of that. They also had their names mentioned in the morning announcement and got to were a special sticker in honor of their birthday. After school they opened their birthday presents from Mommy and Daddy before they went out to play a soccer game. Their favorite presents were scooters, gameboy games and a Lego Bionicles set. After they game we went out to dinner with Nonna and Papa at the Outback and all ate too much. The waiters brought them ice cream to eat with their cupcakes from Nonna for dessert and then sang Happy Birthday. We were all exhausted by the end of the day.

Gus and Sam with some of their presents

Sam is doing a good job holding Luke

The boys playing with their favorite toy - gameboy

Even though they are older now I still love their cute feet

Gus lost his first tooth a few days before his birthday on April 24th

If you look at this photo close up you can see that Luke is getting a lot of new teeth too