Well Bust My Buttons...

Kade no longer has a button!! Yes, we have a button-less boy. The surgeon removed it yesterday and all is going well. It is only covered with some gauze and a Looney Toon band-aid. If by chance the skin doesn't close up by Monday, we will have to go in and have them place a stitch in. It is not leaking like they said it might so we are thankful that!
Kade still is hesitant about walking. He will take steps, but then drops down and crawls. He does have bruises to show is willingness to climb though. He is always so proud when he reaches the top of whatever he is conquering!
We had fun over Halloween, Kade was Roo from Winnie the Pooh and Hanna was a bride. We attended a gathering at the Omaha Children's museum that was hosted by a group called Dance Marathon. It is a group of college kids that have a 12 hour dance marathon for Children's hospital. It was fun to play and meet other families and hear their stories. The event will be held on February 19th, but the have gatherings every other month. Our favorite Surgery resident, Dr. Worth met us at the museum and she was so happy to see how well Kade was doing. We are thankful that our encounters with Surgeons are strictly social these days!!
Keep checking on us and I will try to post every now and then!
Thanks again for all your prayers!

Routine

Sorry for not posting for a while. I have been back to work full time for the past couple of weeks, and we are adjusting to our old routine, which we are so thankful for! Kade is doing exceptionally well with eatting! So well that we have not had to use the feeding tube at all this week. The surgeon said that if we do not use it for 3 weeks, we can take it out! Last week we did have to go back up to Children's to have the surgeon look at the area around the button. Troy and I noticed it was hard and something was almost poking through the skin. Turns out it was a stitch that had come undone, and it was nothing to worry about it would eventually dissolve. The surgeon stated that if we saw something blue poke through the skin we could just trim it...I said that we would just come back for him to do the trimming!! So far nothing has poked through and the area is getting softer.
Hanna was not happy when we pulled into the garage at Children's. The first words out of here mouth were "What are we doing here!?" I explained that they wanted to look at Kade's button and that we were ALL going home together TODAY! She accepted that and we were off. She didn't skip a beat when it came to the elevator, and was all over the Drs and nurses when we stopped by the PICU to visit. Everyone was so excited to see how well Kade was doing, and Dr. Trempher got a snapshot with his iphone.
Kade is doing very well at daycare, and Hanna just loves him to pieces every chance she gets. Kade has taken a couple of steps for us, but still perfers to crawl.
I will try to post weekly, but as the saying goes, no news is good news!
Thanks for checking on us!

October 5

Kade is still doing great with his eating! He struggled with drinking a little, but has overcome his initial reaction to automatically spitting it out. He loves to feed himself, but has also become more accepting of being spoon fed, which really increases our food options! He was eating a lot of peaches, bananas and puffs for a couple days until I was able to feed him regular baby food with a spoon. We are working on decreasing the need for tube feeding during the day, which allow for more freedom to move around.
Speaking of moving around, Kade has taken a couple steps!! He is definitely getting brave, and he has the bumps and bruises to prove it! He has a lot of friends as daycare that are walking, so I hope that helps encourage him.
Kade will start going to daycare 3 full days a week. I am back at work and enjoying getting back to our regular routine. Hanna is really happy to have here brother back at "Hearts" with her. Their classes are outside at the same time, so they get a chance to interact with each other.
We are looking forward to a month without Dr appointments! Our next visits will be in November when we see the surgeon for our followup, and Dr. Russell for Kade's 15 month appointment. Thank you for continuing to check on Kade's progress!

Eating!!

We have been very busy at our house these last couple of weeks, a lot has changed!! The best news is that Kade is eating!! He is really into finger foods and wants to do it all himself. We still give him formula via the feeding tube to make sure that he meets his nutritional needs.
The last time I posted, Kade had just had another swallow study. The days following that he was vomiting 3-4 times a day. We treated it as a virus, running Pedilyte continuously for most of the weekend. Then on Sunday night we offered him some banana and he started to put it in his mouth and swallow. He didn't gag at all! We were so excited we ended up giving him the whole thing! He has been eating ever since!!
Today is Kade's first day back to daycare and my 2nd day back to work. I have only called daycare twice so far :-) When I spoke to the teacher after lunch, she said that he had fun when they went outside and he ate a good lunch, both a big relief for me! We will continue to go to Madonna for therapy 3 days a week for now, so we are easing back into work and daycare slowly on Tuesdays and Thursdays.
Thank you to all of you for your continued thoughts, prayers and support.

Wednesday (9-16)

Yesterday's swallow study showed that Kade is doing better controlling food before swallowing. We will begin to experiment with nector thick liquids as we work on trying to make him feel hungry. It is hard to meet his nutritional goals, and try to make him feel hunger, there are not enough hours in the day!

Yesterday Kade also had his first day of pool therapy. He really enjoyed it, slashing and kicking. Today at therapy, he impressed them by crusing around furniture. He is on the right path to walking, which is wonderful because my back is killing me!!

Monday (9-14)

Things are great here at the Loseke household. Kade keeps amazing us with his fast recovery to age appropriate activity. He is getting into everything! We love it!!
We will be going in for a modified swallow study tomorrow morning. Kade did very well last night with a sippy cup of thickened water. Multiple times he took drinks and swallowed without gagging. This morning he took about 5 bites of thickened formula that I fed to him with a spoon without gagging. We are very pleased with these small victories! We will post the results of the new study when we know more.
Thank you to the Random Acts of Kindness Angels for your generous gift to our family, it is greatly appreciated.

Friday (9-11)

Thank you to all of you for your Birthday wishes to me today. The best gift has already been given to me, to have my family back together under one roof!! We continue to be blessed with Kade's recovery. He can get from the kitchen to Hanna's room in approximately 5 seconds! If he sees her door open, you can guarentee he is heading that way. The other night she asked how to spell "Kade stay out of my room!" Obviously, everything is pretty much back to normal around here!

Kade is doing well with tastes of food. He continues to accept more into his mouth and has success with swallowing and not vomiting. The only way to make your swallow stronger is to swallow, so that is what we work on. He doesn't fuss as much as he used to when we put him in the highchair, so that is a great sign that he is accepting the "process" of eating. We will be going in for another swallow study next week to see if there are any changes from the inital study done at Children's.

We did finally get approved for Medicade and for the Aged and Disabled Waiver! Medicade will allow us to get the extra feeding and swallowing therapy needed, since we were running out of visits from our primary insurance. LPS will also begin to work with Kade, offering Occupational Therapy along with feeding and swallowing. Thank you to all the Taxpayers, we will not disappoint you :-)

Thanks again to all of you for keeping up with our little miracle!