3rd Birthday!

I have a bit of catch-up to do since I have updated last....

I wanted to share some pictures from Mason's 3rd birthday!

Mason turned 3 in May and we were able to celebrate with family and friends. Mason loves trains and Travis and I decided to get him a train table for his birthday. We spent countless hours putting it together the night before (into the wee hours of the morning) so that he could wake up and see it the morning of his party. Boy was he surprised and excited!





Then it was party time! We had a small party with friends, family and Mason's favorite neighbor Joe and his wife Sue. One of the hit gifts of the party was a school bus book. Mason LOVES all things school bus! Even months later, Mason still totes around his school bus book.



He was sooooo excited to blow out the candles on his school bus birthday cake!

Make an on-line slide show at www.OneTrueMedia.com

Time Flies!

Wow! Has it really been 6 months since my last post?! I can't believe how time flies! We are all still doing great and I have lots to update you on (Mason's 3rd birthday, DeVos Intensive Feeding Program, Pre-School Plans, etc.).

Look for some new posts and pictures very soon :) For now, I am going to go and enjoy this beautiful day with my loves!

Then & Now

The other day, Mason wanted to get into Izzy's high chair. It was the same high chair that he used when he was little. We took some photos and I thought it would make an excellent "Then & Now" Post.




What a difference 2 years makes!!!!

Winter Update

I have a free minute (those are pretty hard to come by these days!) so I thought I would update you all.

Mason is doing pretty well these days. He is no longer on winter lockdown and is catching his fair share of the bugs going around. So far he has handled them like a champ with the exception of one cold virus that went into his lungs. We were very much on the lookout and after a couple of days of a worsening cough, we took him in to see Pulmonary. After a long visit and a chest x-ray we were on our way home with antibiotics, steroids and extra breathing treatments (that we had already started when his cough first showed up). After a few days he was feeling much better!

This winter we have a pretty full schedule. Monday he attends a speech class through Early On. He is in it for the structure it provides. His speech has been pretty good considering that he doesn't have the same muscle structure in his mouth that other eating children have. We are hoping that the structure will help him transition easier into his intensive feeding program this summer. On Tuesday we see Heather, Mason's UofM OT. On Friday, he has a 2 year old playgroup followed more OT with Norma. On Wednesdays and Thursdays we try to relax, run some errands or get together with friends...oh and sometimes I make an attempt to clean :)

We recently had a follow-up with the DeVos Intensive Feeding Program. We are still trying to get the gag/retch cycle under control...it is so hard in these kiddos with g-tubes and Nissen wraps. Mason is currently switching tube formulas again...this time to a formula called Compleat. It is made from "real" food like chicken, rice, etc. I guess some kids have better luck with a food based formula. So far he is tolerating it pretty well. We are about 1/3 of the way switched over.

We did receive some great news, the feeding program is running about 3 months ahead of schedule. This means that Mason will probably be attending in the summer instead of the fall (we are doing the happy dance over here!).

He is doing pretty well developmentally too. He spends his days running, jumping, talking, singing, playing games, counting, etc. He still loves his cartoons and wants to watch Finding Nemo all the time! He is also showing signs that he is interested in potty training....look out Mom & Dad!

I wanted to leave you with a few pictures of two amazing little boys! Noah, Mason's CDH buddy came to visit a couple of weeks ago with his Mom and little brother. We had so much fun and wished they lived closer! Here are a few pictures of the big boys (Mason in blue, Noah in green)! Check out our family blog later for some pictures of the little ones playing together!

Today is a New Day

I was having a tough CDH day yesterday, all of us CDH Moms have them sometimes. I found myself emotionally wrapped up in all of the negative aspects of CDH and I found myself posting an update that I fondly entitled "I Hate CDH". I have since decided to delete it....because today is a new day.

Thank you Carrie (Noah's Mom) for spending the better part of an hour on the phone with me last night. We comiserated, we talked, we laughed and came to the conclusion that one day our tube fed boys (including Ethan and Riley!) are all going to be eating pizza and discussing sports and other boy things! We will ALL get there. There will be a lot of blood, sweat and tears....but they will get there...and they will experience more love than most children while doing so!

Thank you for uplifting me, even though you are going through trials of your own. It means so much to talk with someone who is going through the same things and experiencing the same fears!

Today is a new day!

Fall Update

Sorry to keep you all wondering...again. Time is seriously slipping away from me. We are still busy, busy, busy but doing great!

Mason is almost 2 and a half now! My how time flies!

Mason is still a really great big brother. His sister is now 6 months old and Mason gives her kisses and tries to tickle her. He also brings her toys to play with and it is great to see them really get to interact with each other!

His lungs continue to stay healthy since our last post. We are keeping our fingers crossed that they are able to stay that way this winter! Overall, he has been pretty healthy since our last post with only 1 cold and a short intestinal virus. He just recently had a visit with his Pulmonologist who was thrilled at his progress and won't need to see him for another 6 months. This will be Mason's first winter without full lock-down! We are excited to have a bit more freedom this winter!

This fall, Mason is continuing with the IPSEP (infant and preschool special education program) through our school system. This year he is done with PT! Yay! He has almost physically caught up to his peers. Right now the only gross motor things he struggles with are jumping and walking up/down stairs while holding the wall or railing. He has started to walk up and down the step from our kitchen to our family room this past week, so we hope that the stairs will be right around the corner. He has started OT with the school system and we LOVE his therapist Norma. She has really taken the time to understand his quirks and is devoted to helping him learn to eat and to diminish his behavorial issues that are associated with food. She understands how important it is to make his therapy sessions fun.

We have also enrolled Mason into a program called Stay and Play. It is also through the school system and is basically a playgroup of normal 2 year olds. It can be a struggle for me to see Mason next to all of the healthy 2 year olds, and see that he still has a long way to go, I just get so hearbroken when I see this. I thought it would be easier, but it's not, it is really hard to muster the motivation to take him there. I do it because I know that he LOVES it and it is good for him. He is such a social guy and just gets right in there and starts playing. He has come soooooooooo far, but still has quite long way to go in many areas. He has worked so hard to get where he is today! There are about 8 kids in the group and I have only talked to a couple of Moms about what Mason has been through, the rest have no idea. This program is really good for him however, and helps him get over some of his sensory fears by watching other kids do certain activities. He is also picking up speech from some of the other kids and has learned "NO! MINE!" and says it pretty well :) His teachers are great and know exactly what he has been through and they are completely supportive.

On to other news....Mason had his evaluation by the Intensive Feeding team at DeVos Hospital in Grand Rapids. It was a long and comprehensive vist with a team of doctors and therapists. He has been accepted into the program, but will not start until early fall of next year. They are the only feeding program in Michigan and the waiting list is pretty long! In the meantime, they are working with us to decrease his gagging and retching. They have added a couple of meds back to his schedule and are planning on switching his formula to see if that will make a difference. We are just waiting on insurance approval before we can start the new formula.

Next month, Mason will have his yearly CDH clinic appointment at UofM. He will see his Pediatric Surgeon, Pulmonologist, Cardiologist, Dietician, OT and PT. It will be a long appointment, but great to have everyone together to discuss his plan for the next year.

In other non-CDH related news, many of you know that we have been cloth diapering our kids. I have always dreamed of owning my own business and recently decided to open up a internet retail store for cloth diapers and accessories. Great Lakes Diaper Company opened for business last month! Stop on by and check us out! Mason is our "testing" department supervisor :)

Summer Update

We have had a great summer so far! I know...it has been a while since I have updated. I have been busy, busy, busy enjoying summer with the kids, doing endless mountains of laundry and trying to clean a house that always seems to be messy, and cuddling with my little boy and baby girl, and spending quality family time. What more could a Mom ask for? It has been a terrific summer to say the least!

Mason is still doing great. He is having a blast this summer with water! You name it, we have done it! He loves his baby pool, sprinkler, water table, big pool, local spray/splash park or just a plain 'ol bucket of water with some toys to splash in.

Physically he is doing wonderful. His PT sessions at UofM did wonders for him! He is moving around like a typical 2 year old. Right now we are working on jumping and walking up/down the stairs. We are also doing some balance beam work. Mason just had a check-up with his Physical Medicine doctor and....drum roll please....there is no more concern for cerebral palsy! Looks like it is totally out of the picture. She will see him one more time in 6 months and then he will be discharged from her service.

Onto more good news...his lung function test in June came back with results consistent with his last test. He still falls within a low normal range for kids his size and weight. He has mild air trapping and low compliance which are signs of his chronic lung disease. I am so amazed at the progress he has made in this area! His Pulmonary doc decided it would be best to stick with the current breathing treatments for now.

The latest development in Mason's care is a new consultation with an intensive feeding clinic in Grand Rapids. We see them on September 10th to discuss Mason's feeding progress. Feeding for him is really an up/down roller coaster. Some days are good (for him this means some drinks of water and a taste of cracker) while others are bad (complete refusal of anything food/drink related). We haven't really been able to make much progress and it seems that we are having more bad than good days lately. I will post more later...

Mason has been a wonderful big brother to Isabel! He loves to bring her toys and try to give her a pacifier. He also loves to tickle her and pet her head. When he sees her every morning he says "Hi baby!". He looks for her when she is napping in another room and shows concern when she is crying. He also has the knack for making her laugh really hard! He is such a sweet boy!