Week of November 1 - Aidan's Baptism

Aidan had a very good week. He got to exercise in PT with his old friend Dan from the NICU. He had a very good speech session with Casey. His labs look very good and he was able to get his H1N1 shot in kidney clinic this month. Mommy got hers as well through Daddy’s doctor. There where no major problems with hemodialysis this week. On Saturday Aidan was baptized (finally). We just never had the opportunity and we were finally able to accomplish this important milestone. His Grandma Lee and Ray came down from up north for the baptism. Unfortunately his Grandpa and Grandma Marino were sick and could not make it and his Grandpa and Grandma Troxtel could not make it either. They were all there in spirit though. Aidan would like to thank everybody for coming and for the generous gifts. The family went out to eat at a really nice restaurant followed by some play time with Aidan and Grandma Lee. On Sunday Grandma Lee was able to give Aidan a bath. I think she and the little guy both really loved it. Aidan has made some great progress over the last few months. He is even starting to clap on a consistent basis and seems to be on the verge of being able to communicate (non-verbally with us). We will keep working at it. Well that is about it for this week. Talk to you soon. All our love.

Aidan's Baptism

Bath time with Grandma Lee



Having fun with Grandma Lee

Week of October 26th - Happy Halloween

We had a pretty fun week other than the orthopedic appointment debacle this past Monday. We started off by going to Chris and Megan Polak’s Annual Halloween party. Although we didn’t stay long it was nice to see our friends and get out of the house for a bit. Daddy went as a banana, Aidan was a monkey, and Mommy was a Goddess. On Monday we tried to get Aidan’s 6 month follow up x-ray for his hip. However, when we arrived for the appointment we were told that it would be about a 1 hour wait for his x-ray followed by a 2-3 hour wait to see the doctor. Needless to say we cancelled the appointment and returned home. We did get the x-ray at the University Hospital later in the week and as it turned out Aidan’s hip has gotten better and he may not need any surgery in the future after all. Later in the week we dressed Aidan up for his school pictures. He was a really good boy and his picture turned out really well. Hopefully we will get them before Christmas so we can send them out to everybody. Later that day the Early-On teachers stopped by and put Aidan on a Rody. It’s hard to explain so just check out the picture. Mommy had a chance to sing me one of her favorite songs. On Halloween daddy and I dressed up and hit a few houses for some nice tasty candy. Hopefully next year I will be able to hit some more houses and get some more candy.

School Picture

Aidan and Rody - We bought him his own Rody. He loves him.

Our little monkey

Week of October 19 - 25th, 2009

Aidan had a very busy week. On Monday we went to get him a hip x-ray as a follow up to earlier in the year. He has a small left hip alignment problem which will require surgery in the future. We would have waited 1 hour just to get the x-ray and then another 2-3 hours to see the doctor. The appointment was cancelled and Daddy made other arrangements. On Tuesday Aidan had his usual hemodialysis followed by a wheelchair evaluation. Aidan will be getting a new high tech stroller, high chair, and bath chair (if the insurance company approves) around February. On Wednesday Aidan had a visit from the Early On teachers which went very well. On Thursday we had hemodialysis followed by the rescheduled hip x-ray (we were done within 40 minutes) and then an endocrinology appointment. Aidan has been on growth hormone for about a month and it is showing. He has grown about ¼ inch in just the last month. On Friday Aidan had a small surgical procedure – he got another bronchoscopy (the ENT doctor wanted to look at the granulation tissue in his trachea and we upsized Aidan's trach. Everything went well and we were home by 12:30 that afternoon. On Saturday we had hemodialysis which took a bit longer because one of Aidan’s hemo lines was clotted. Later that evening we went to a Halloween party. We all dressed up and had a nice time at the Polak’s annual party. On Sunday it was just Aidan and daddy for most of the day since Mommy had a baby shower to attend. Aidan’s speech therapy will restart next month (we finally got approval after waiting 2 months) and we were able to make a dentist appointment in January to look at Aidan's green tooth. Well that’s about it for now. See you next week.

October 11-18

Aidan had a great week. He continues to “crawl” or at least attempt to and is making great progress. On Friday we went to The Arc of Michigan. It’s a place where you can “borrow” toys for a month at a time to see if your child likes the toy. You can then purchase the toy at a local toystore and know that your child already likes the toy. We also interviewed a back-up/on-call nurse on Friday that can fill in for our other two nurses when needed. Daddy had to go to a wedding in Chicago over the weekend so Mommy took Aidan to the craft show on Saturday. They then celebrated Sweetest Day with Grandpa and Grandma Marino with a nice dinner later that evening. Well that is about it for now. We have a very busy week coming up. We will update everybody next week.

October 4, 2009 – October 11, 2009

Aidan is doing very well. He continues to make progress in many areas. This week was exciting because Aidan received his min-wish from the Rainbow Connection. Here is their website so you can check them out http://rainbowconnection.org/. They are a great organization and we are very fortunate to be a part of their program. On Tuesday Aidan was visited by one of the representatives from the Rainbow Connection. They explained the program and gave us some history about the charity. The following day he received all of his gifts from the Rainbow Connection via Amazon.com. As you can see he was given many, many gifts that he enjoyed immensely. When he gets older he can decide for himself what he would like his big wish to be.

Mommy and Daddy also took Aidan to a new cider mill on Sunday. They had some animals for him to pet and a wooden cut out of an apple with a worm in it so you can take his picture. We picked up some cider and doughnuts and a few pumpkins for Halloween. It was pretty chilly so we did not stay long. Well that’s about it for this week.

10-5-09- Week of Sept. 28 through Oct. 4

We are going for 3 weeks in a row of nothing exciting happening. Erik and I are really starting to like this. Monday night mommy had suite tickets to the Tigers game but it got rained out and rescheduled for Tuesday. Unfortunately, Nurse Stacie was not feeling well on Monday so we had no nurse until Thursday. So that meant mommy could not go to the rescheduled Tigers game on Tuesday. Tuesday was a busy day for mommy, daddy and Aidan. We had dialysis in the morning from 7:30 am until 10:30 am. Then it was off to the physical therapist for some PT. Aidan did really well in PT. He was bearing some weight on his knees and trying to crawl up some stairs to get to a toy. It was really exciting to see him advance. I know that he is behind for his age, but he has really been active lately. Then after PT it was off to the ENT doctor. It looks like the next big surgery after the transplant will be something called Mandibular Distraction. Here is a website for you to look at about this surgery (http://www.pedsent.com/surgery/swfs/distraction/distraction.htm). We talked to the doctor a little bit about this surgery during our visit. We are thinking sometime next year for the Mandibular Distraction surgery. We also setup Aidan for surgery on November 16th. He is going to have some granulation tissue removed from his trachea, they are going to inserct a new trach one size bigger and then he will be receiving another bronchoscopy. Early-On came for another visit on Wednesday. They were very impressed at how much progress Aidan has made. Thursday was another trip to hemodialysis in the morning followed by kidney clinic and pulmonary clinic. Everything checked out ok for Aidan. On a lighter note, Aidan wore his University of Michigan gear to hemodialysis on Saturday for good luck but it didn't work as the Wolverines lost 26-20 to the Michigan State Saprtans. On Sunday Aidan wore his new Tigers shirt that Mommy got him on Monday at the stadium. That seemed to work as the Tigers won 5-3. He then switched to his Lions shirt but again that didn't work as the Lions were beaten badly by the Bears (Grandpa Troxtel's new team) 48-24. Well that's about it for this week. Thank you all for the support and prayers. We miss and love you all.

9-28-09 - Week of Sept. 21 through Sept. 27

Another quiet week for the Troxtel's. Monday we had no nurse because her family was sick. Dad just hung out with Aidan all day. Below is a picture I took Monday when I walked out of my office to get a drink of water:



Tuesday, Thursday and Saturday were dialysis days. Pretty uneventful.

Wednesday the early on team came to the house again and worked with Aidan.

Friday night Erik and I were able to go out for our anniversary. We went out to dinner, Best Buy to look for a new dishwasher then headed over to Target. We picked up a couple of Halloween outfits for Aidan.



Saturday Aidan wore his Michigan outfit that Grandma and Grandpa Marino got for him:



Sunday we gave Aidan a bath in the tub. He was a little weary in the beginning but then realized that he was able to kick his feet under the water and had a great time.





After the bath we put Aidan in his Lions shirt that daddy got for him from the game last week. The shirt must have worked because the Lions won for the first time in over 2 years. Daddy is convinced that Aidan wearing his shirt on Sunday helped the Lions win and he stated that Aidan has to wear it every Sunday now.

The big news for the week is that Aidan crawled a little on Wednesday. We were so excited. It was just a couple of steps forward but it was a big accomplishment for him.