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!

The Many Faces of Mason

Here are some cute photos of Mason from his trip to Grandma and Grandpa Sennett's house. He was using his battery operated squirt gun to get everyone and everything wet! He also had a blast playing with some of Grandpa's tools.

Mason is 2!

I am so proud and happy to say that our little miracle turned 2 on May 25th. I can't believe how fast the time has gone by. The NICU memories are still so fresh in my mind that sometimes it seems like yesterday. Even though the memories are still so vivid, I get to watch my toddler walk, run, talk, "read" books, give hugs and kisses, tickle his little sister, etc. There are days when it still brings tears to my eyes. He is such a happy boy.

We celebrated his birthday on Sunday the 24th with friends and family. I made him a cake in the shape of a dump truck. The minute he saw it sitting on the counter he smiled and said "dump truck!". He had so much fun at his party playing with his toys. He is such a social boy and loves parties! He is really becoming independent and will dissapear into the party crowd and mingle with everyone instead of sticking next to us.

Here is a glimpse of Mason at age 2:

* Like most 2 year olds, his favorite word is "no" :)

* He is fascinated by his little sister and loves to tickle her and try to give her a pacifier.

* Like always, he loves his books. I think he could probably sit for hours looking at all of them.

* He loves trucks!

* He is very good at entertaining himself and is able to play independently when my time is consumed with the baby.

* He loves cartoons! His favorite is Wow Wow Wubbzy. When it is on, he loves to march around saying "Wow! Wow!".

* He continues to love music. His favorite song is Wheels on the Bus. When we are in the car, he will do all of the hand motions and giggle like crazy when I play it for him.

* He loves to give hugs and kisses and is still our "snuggle bug".

* He loves to go outside and play!

March For Babies Walk 4/25/09

I want to start off by saying how proud I am of my husband. He really dedicates himself to the March for Babies each year. This year he raised $2,700 and exceeded his fundraising goal by $1,200! This year was the first year he organized a team to walk to walk in honor of Mason and CDH. 15 people came out to support him and even raised an additional $890 bringing the grand total to $3,590!

The weather turned out beautiful and we were thrilled that Mason was able to join the team in the walk. Everyone had a great time, despite sore feet after such a long walk.

Thank you to everyone who donated, participated and helped raise money for such a good cause!


Team Mason


Mason petting a horse with Daddy at one of the checkpoints

Behind....

Today I decided to delete my list of other CDH blogs. Unfortunately I never had the extra moment to keep the list updated like I had originally planned. Now with adding a newborn to the mix, I think I will have even less time.

If you like to check in on some Mason's CDH buddies, please visit Sofie's blog, Nayeli's blog, or Carter's blog. All three Mom's do a wonderful job with keeping updated CDH lists.

Big Brother!

Yikes....I have been a total blog slacker lately, but for good reason. We just recently welcomed Mason's baby sister into the world on April 17th at 11:30am. Mason is now a proud big brother!! He has adapted really well and is very curious about this new person in our house. So far he doesn't seem to mind us taking time to care for her and has even given her a couple of kisses. What a wonderful big brother!

Pictures can be found on our family update blog (see link at right).

Spring Cold

Mason has been doing really well lately, with the exception of catching a bad cold yesterday. Actually all of us caught it. So far he seems to be handling it well, just extra tired with a runny and sneezy nose. He has a lung function test scheduled for Thursday, but we may have to reschedule due to his cold.

Over the past week he has become a full-time walker for the most part. He is still having some trouble standing up on his own without the use of a wall or object, so if he falls in the middle of a room, he will crawl to the closest thing to help him up. Mason is also going to receive some extra PT at UofM. A HUGE thanks to Jeannie and Dan for moving mountains to get us in! He had an evaluation on Thursday and since then we have been working on throwing and kicking balls, stepping over and around objects on the floor, carrying large objects while walking, core strength, balance, etc. Right now Mason's gross motor skills (according to the Peabody test) are at the 13 month old level. He is really interested in playing with the other neighborhood kids his age, but can't keep up with them yet. Six weeks of extra PT should really help him catch up to his adjusted age of 19 months.

Mason's occupational therapy has been going pretty well. He now has a few summer months off before we go back. We are at a stage where he just needs exposure to a variety of different foods and textures, something we can do at home rather than at the hospital. He is still drinking lots of water which is great. He is also starting to take some tasts of our lunch and dinner with a fork, as long as it is a sauce or gravy texture. Our next step is to get him comfortable with squishy and slimy solids like cooked veggies and fruits.

Update

I thought I would post a little general update on how Mason is doing.

First, the mysterious skin bump is well....still a mystery. It did pop and drain about a week after I last posted about it, and now it looks much better. Since then, we visited the Pediatrician again, tried a stronger antibiotic, and were referred to a Dermatologist. The Dermatologist said it didn't look to be bacterial or infectious which was good news. She did say it could be a number of things and we would not know for sure until we took a biopsy. She did say it does not look to be dangerous or bad and is probably a harmless growth. The biopsy will leave a scar and since Mason doesn't need any more scars we made the mutual decision to wait an additional 6 - 8 weeks to see if it will heal up on its own. If it doesn't, then we will proceed with a biopsy. The good thing is that it appears to be healing on its own, ever so slowly. We are hoping that it will be gone by the time the 8 weeks is up.

Mason is also walking around a lot lately and we have noticed that his balance is improving each day. I still stare in disbelief when I see him walking. I can't believe how fast he is growing up! Here is a video we captured over weekend.



Mason has been working with puzzles quite a bit lately. He really likes his wood stacker and is getting pretty good at putting the pieces back on after he takes them off. We also just started with a shape puzzle that has colors on it. Mason has done really well with matching up the colors which helps him find where the shape belongs. He just has a little trouble getting the puzzle pieces to fit perfectly into the hole and will become pretty frusterated. Once his fine motor skills catch up, I think he will have an easier time. He has also become really interested in his Sesame Street alphabet cards, I think mostly because there are pictures of Elmo and Cookie Monster on them :)

Here are a couple of recent pictures taken over the past couple of days:

Playing....
Watching cartoons with his snuggly blanket.
Helping with the kitchen remodel.

I thought I would end this post with a video of Mason being goofy.

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Mason is...WALKING!

Over the last few days, Mason has been standing for longer periods independently and taking multiple hands-free steps near objects that he could hold onto if he needed. Last night, Mason left a chair in the middle of the room and casually walked to the couch with probably 6 independent steps. Travis and I were both fortunate enough to see it happen. It was the very first time Mason stepped out into space with nothing to hold onto; no safety net. He did great and kept his balance the entire time! Hopefully we can capture it on film soon!

Mysterious Skin Bump

Things have been going really well for Mason lately, with the exception of a mysterious skin bump on his forehead. For about a week a red spot came and went and we really thought nothing of it. A week later, it stuck and has been growing in size and getting more red for the past 4 weeks. We have visited the Pediatrician twice and have tried two treatments, but nothing seems to make it go away or get any smaller. If it doesn't improve by the end of this week, we will have to visit a Dermatologist to see if they can tell what it is.

It looks like an infected clogged pore and we have been using warm compresses to try and bring it to a head so that it can pop and drain. He is on topical and oral antibiotics right now, just in case it is a bacterial infection. The compresses are hard to do when he is awake, so the past few nights I have been doing them when he falls asleep. It looked like they might be working and it was close to being ready to pop last night. My fingers are crossed that tonight will be the night. The Pediatrician feels that once it pops and drains, it will heal up pretty fast. Since the location is right between his eyes, she did not feel comfortable lancing it at the office and was not able to manually "pop" it at our last visit.

March for Babies

That time of year is coming up again! March for Babies is on 4/25/09 in our area. Last year Travis walked for Mason and was able to raise more than $1,000 in donations thanks to your generosity.

We have set up a bit of a different goal this year. There were many people that expressed interest in walking with Travis, so we decided to create a walking team. Our team will represent CDH and will hopefully help to raise some awareness. Our goal is to get 25 walkers this year to participate with Travis and Mason. If each walker raised $100, our team will generate $2,500 for the March of Dimes, a truly special organization.

I really wish I could walk this year, but the event is only 2 days away from my due date.

Please check out our Team Page and register to join us!

Playdate

This past Sunday, we were able to get together with the Baker's. Noah is one of Mason's CDH buddies and was Mason's roomie when they were on ECMO at UofM. We have all become such great friends and have really gone through this CDH journey step by step with each other. It is great to have friends that can relate to everything that we have been through.

We visited the Baker's at their house and the boys all had a great time playing. It was the first time they were able to play together ouside of a hospital or doctor appointment.

Check out The Baker's blog, they got some great pictures!!

Pudding Therapy

Who can resist a little chocolate pudding therapy? Not our little guy! A few nights ago I made some chocolate JELLO cook'n'serve pudding for dessert. We stripped Mason down and let him "have at it". He made a huge mess and even tasted it multiple times. He really had fun with it and made us laugh, and laugh. It was such a success that we decided to have pudding therapy as much as we can now. We can really start to tell that his sensory issues are now becoming far and few between. He didn't mind getting dirty and digging in the pudding. I served it warm so I am sure that helped a little.

Pictures

I just realized that the last pictures that I posted of Mason were from Christmas! Here are some recent pics...

Posing for the camera....



Using his walker (you can see the hole in his pj's that we had to add to accomodate his feeding tube)....



Practice, practice, practice...



Another pose for the camera...

First Step

This past Sunday I met up with some other UofM CDH Moms for lunch and coffee. It was wonderful to get together with all of them and catch up. We found a great central location for all of us and we hope to do it again sometime soon!

This is just a short post that I needed to write this down so that I can reference it when I am updating Mason's baby book later...

When I came home Travis gave me the news that Mason took one step by himself about 5 minutes before I came home. He was looking out the window and then turned around and wanted to get to one of his stand-up toys. Instead of getting down and crawling to it like usual, he let go of the window and stepped over to it himself. Travis said it happened so fast that by the time he realized it and started to cheer, Mason was looking at him like "what did I do?".

Yesterday at our Pulmonary appointment, Mason was cruising some of the furniture in the exam room while we were waiting for the doc. He was standing and holding onto my legs and decided to walk over to the stroller by himself. He took about 1 - 2 steps with his arms outstretched in front of him and had a huge grin on his face when he arrived safely.

Seems like the walker is helping Mason develop his core muscles and find his balance. It is so much fun to watch him take these first couple of steps!

Pulmonary Follow-Up

Today Mason and I had to venture out in the snow to go to his Pulmonary follow-up appointment. Even though we left really early, we still managed to get stuck in a traffic back-up and were 30 minutes late to his appointment. Fortunately everyone else was late too and we were still able to get in right away.

Mason weighed in at 25 pounds, 1 ounce. He was up 5 ounces from his last appointment which is great. He is continuing to grow really well and his measurements were given to the nutritionist for follow-up. His weight, length and head circumference are around the 25-30th percentile on a standard scale (not correcting for his prematurity). This is great news!

His last chest x-ray looked good and the doc confirmed in the spring that we would most likely get rid of his Flovent to see how he does. They said he is on it now only as a precaution for the winter months in case he gets a respiratory virus. They will also do another PFT (lung function test) in the spring/summer to make sure he tolerated the change.

We couldn't be happier with the news and we will have a return vist sometime in April/May.

Walking the Halls

Mason took a huge step forward yesterday at his PT session. We have been working with a walker to help him learn to walk. So far he has not really been too interested in using it. His PT was very persistent yesterday and we were able to get Mason interested in using it. He seemed to really enjoy walking upright and was even walking the halls of the school! We didn't expect him to do this for another couple of weeks, but he surprised us and did it yesterday! Way to go Mason! We have a walker at home and he was using it to walk across the family room last night. I am working on trying to capture a photo or video to post.

Surprise Chest X-Ray

Yesterday Mason went in for a "surprise" chest x-ray. He has one scheduled with his Pulmonary follow-up on the 28th of January; however, over the past couple of days he has been really gaggy on and off of his feeds. He was even gagging and retching during his nap, which is really unusual for him. Travis and I were pretty concerned seeing how his last chest x-ray was questionable for possible reherniation. A reherniation would mean that Mason's gortex patch (over the hole in his diaphram) would have separated from his tissue and allowed abdominal contents back into the chest cavity. Common signs of reherniation included respiratory distress, bowel obstruction, and vomiting. Since Mason has a Nissen wrap, he cannot vomit, so it is really difficult to tell with him.

Travis and I decided to take Mason in for an x-ray early this week. I found out one of the surgeons that knows him really well was in clinic yesterday. We went in and Jeannie was gracious enough to stay with him during his x-ray (I have to step out because I am pregnant).

We spoke with Mason's surgeon and there is no sign of reherniation. It was confirmed by the official radiology report this morning. This really put our minds at ease for the time being. We were almost expecting to see some sort of bowel in his chest after the questionable x-ray in November.

Now we just need to figure out the source of the extra gagging. Last night he did great and today he did not gag when he napped. He has learned how to make himself gag which is pretty common in kids with feeding difficulties. This makes it harder to determine if the retching is being caused by a real gag or a fake gag. It he has a full tummy, both will make him retch. We will keep an eye on it and consult with his surgeon in a couple of weeks if it does not improve or gets worse.

Christmas Update

We enjoyed a really fun Christmas Holiday with Mason this year. Now that he is older, he was able to notice and enjoy the festivities going on.

He loved the Christmas tree and loved to turn it on and off (it was tied into a light switch). He also loved to touch the ornaments. We had some pretty bad weather in the weeks leading up to Christmas and not many people in the area had a chance to put up outdoor lights. Travis was a trooper and got out there in sleet/rain to put up some outdoor lights so Mason could enjoy them. What a wonderful Dad! We also took Mason to see the county light show. It is miles of scenic road that you can drive through at night and it is filled with lights, many of them move to create various holiday scenes. He loved the trip and was pointing and smiling at all of the lights.

Mason was spoiled by all of the gifts from his Grandparents and Aunts. He now has lots of new toys to play with. Santa brought him a playhouse that will stay in our dining room until we can move it outside in the spring. We had lots of fun putting it together on Christmas Eve after Mason went to bed. When he woke up and saw it, he nearly jumped right out of Travis's arms from excitement.

Here are a few photos from our celebrations:

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Developmental Progress

Over the past couple of months, Mason has made some pretty big strides in the developmental department. He seems to be learning so fast right now!

For a while, we were all worried about his speech progress. Over the past couple of months he has picked up and is using lots of different words. I will try my best to give you a sample of his vocabulary: ma-ma, da-da, ba-ba, boo-boo, uh-oh, bye-bye, up, off, on, there, row, Dora (he loves the cartoon), knee, ball, dog, yeah, no-no, oh, school, turtle, and fishy. He loves to try and repeat what we are saying and it seems to be how he is picking up so many words so quickly. He latest attempts are with the words clock and truck.

Over Thanksgiving, Mason's Grandma and Grandpa gave him some animal magnets. He absolutely loves them and is able to identify almost all of them when asked to find them. He has also learned how to make the animal sounds for cow, dog, cat, monkey, sheep, and lion. We can't believe how quickly he was able to learn all of this. The magnets have made all the difference for him. I think we will be trying to find magnets for colors, numbers and letters in the future.

We have also been working on identifying body parts with him. When asked, he will point to his head, nose (he even sticks his finger up his nose for smiles), ears, mouth, belly, knee, and foot. We are also working on him becoming more aware of his g-button and he will occasionally point to it.

Physically Mason is progressing, and we are hoping that he will be walking within a couple of months. He is still cruising everywhere and crawling really well. Over the past few days we have seen him take more risks and let go so that he is standing on his own for 5 to 10 seconds. He prefers to do this only when we are not looking :) Mentally he is ready to walk, but his core strength is not quite there yet. He had 6 abdominal surgeries, his chest was opened for heart surgery, and there is a large patch that is holding his abdominal muscles together. It will take some time for him to develop that muscle strength. He also had brain bleeds when on ECMO that bled directly into his brain tissue in the motor function area and for the next while will still be "on the bubble" when it comes to a mild cerebral palsy diagnosis. We are still so proud of all of the physical obstacles he has overcome to even get where he is now. It has been no small feat for sure!

Mason is learning to walk now with the help of a walker, both at home and at PT. I will post some pictures soon. He is having trouble learning to walk with regular push toys because he "folds" over pretty easily and ends up leaning really far forward. We think he feels pretty unstable and will usually walk the toy on his knees instead. With the walker, he is able to use his arms to hold his trunk upright and keep his feet underneath him. He is not a huge fan of the walker right now, but hopefully in a couple of weeks he will be using it to walk the halls of his school. Once he gains enough core strength to balance, the hope is that he will be able to start walking unassisted.

Way Past Due - Early On News

Sorry to keep everyone waiting for an update lately. This past month has been a whirlwind of activity. We had a very busy December and have also embarked on a kitchen remodel (you can read more about this in our family update blog).

I have decided to post a bunch of smaller updates instead of a novel that will cover everything. This way, you can pick and choose which ones you want to read.

I will start with the great news we received from Mason's Early On program. In early December, they did his yearly review which includes testing in various areas. Mason did great. His speech, social and cognitive skills are either testing within range or slightly ahead of his adjusted age. His fine motor skills still need some work, but are not too far out of normal range. His gross motor skills are still a struggle for him, but he seems to be slowly catching up. Overall the review was very positive. His therapists stated that once Mason starts walking, he will finish out the school year and then will most likely be discharged from Early On. WOW! They also suggested that he join a playgroup next year for normal 2 year olds at one of the local elementary schools.

Mason has made a ton of progress and we are really excited for him!