CDH Clinic - Long Update

Thursday was Mason's big day at the UofM CDH Clinic. Even though he had to wake up early for his appointment, he seemed to be in a good mood for the day.

First, Mason saw the same Physical Therapist that treated him while he was in the NICU. He did an evaluation to see where Mason falls on the charts for his gross motor skills. Right now, Mason is at a level equal to 10 months and 3 weeks. This was not really unexpected news for us, as we are currently working with Early On to try and get him caught up. The therapist thought that if we really challenge Mason physically at home, he may be able to catch up at a faster rate. We will share this info with his Early On therapist to try and develop a more structured program for him.

Mason saw a dietitian next. Overall they are happy with his weight gain and size. He is in the 80% for weight and 75% for height (on a scale corrected for his prematurity). We have a plan to modify his feeding schedule slightly so that he will only get 3 boluses during the day and 4 to 5 hours of continuous feeds at night. It will take us about 4 weeks to get to this goal if all goes well. The plan is the modify it slightly every week until we reach his new goal. The reason behind this new plan is to space out his feeds by at least 4 hours to allow more time for hunger to develop.

Next we saw an Occupational Therapist. It was nice that this therapist has some prior experience with Mason (from last week's appointment). He is showing some very positive signs that he is ready to venture into eating. Lately he has been drinking more and more water and even drank 2 and 1/2 ounces one day last week. He is also willing to explore and taste and variety of foods now. Tonight he even ate 4 to 5 small bites of vanilla pudding, a huge step for him!

Next we saw the Pulmonologist. They are very pleased with his progress so far. His lung function falls within normal range, but on the low side. Given Mason's history, they were not expecting results this good. We are all amazed at how well he has done in this area! The plan is to continue with his breathing treatments until winter is over. In the spring, they feel that we might be able to discontinue them since he does not show any obstructions when breathing.

Next we saw the Pediatric Surgeon. He was very impressed with Mason's progress so far. We reviewed his latest chest x-ray from last month and there seems to be some areas of concern. Mason's CDH was on the right side, so it is difficult to tell what is really going on. We did see some bowel above his liver, but it looks to be beneath his diaphragm. We are hoping that he did not reherniate, but we know this is very common in kids with a patch. Right now, the plan is to take another x-ray in 3 months. We will be watching him closely for any signs that might indicate a need for quicker action.

Lastly, we saw the Cardiologist. Mason had a heart echo on Monday and the results were good. He does not have any pulmonary hypertension at this time. This is pretty much what we expected since he did not have to struggle with this at birth. They had a hard time seeing all of the pulmonary veins and how they returned to his heart. There were many factors that played into this: his age, the fact that he was sedated and he has some strange anatomy in that region (one of the reasons ECMO was difficult for him). The plan is to see the Cardiologist yearly and then get another heart echo when Mason will tolerate it while awake, usually around age 3 or 4. The great news is that he shows no ill effects of having ECMO cannulation through the heart. His heart murmur has also seemed to disappear.

Mason will return to the CDH clinic in 1 year. Until then, he will continue to have individual follow-up appointments in each area. His PT and OT schedule will remain the same.

I have to say how proud we are of Mason. He was one of the sickest CDH kiddos that UofM had and now he is doing great! We were reminded of how much a miracle he really is!! We have received such great medical care from UofM and have such a wonderful network of friends and family that have prayed for and supported us. We have so much to be thankful for.

Watching Outside....

Things have been going pretty well here. We are now officially in "lock-down". This winter we will not take Mason to any public places, besides Dr. appointments. He has approval to attend playgroup once per week and attend family functions this winter (if all attendees are healthy of course).

Tomorrow Mason will be going in for a sedated heart echo. This is just a follow-up before our big CDH clinic appointment at UofM. It is especially critical for Mason since he had ECMO cannulation directly into his heart (a procedure often used for infants with congenital heart defects), resulting in 3 heart surgeries. Mason was not born with any heart defects, however his anatomy did not allow him to sustain on ECMO the traditional way. Hopefully they don't see anything alarming.

Thursday is our CDH clinic appointment at UofM. They just developed a multi-disciplinary clinic for CDH patients. When we go, Mason will see Pediatric Surgery, Pulmonary, Cardiology, PT, OT and Dietary. We are very excited to see everyone all in one appointment. We are so thankful that UofM has developed this program.

Friday we have our 16 week ultrasound for baby-to-be Ellinger. We have still not decided if we are going to try and find out the sex. Right now we are leaning towards having it be a surprise. I am thinking that curiosity might get the best of us, and we may change our minds later.

We spent most of the weekend at home cleaning up leaves and branches in the yard. Travis and I had a chance to get out to see a Lions game this afternoon. It started out as an exciting game but unfortunately the Lions lost again. Grandma and Grandpa Sennett looked after Mason for us, and wore him out :)

I captured a few good pictures of Mason watching his Dad work outside on Saturday. He loves to stand and look out the front windows.

Halloween Fun

We hope everyone had a great weekend. Our Halloween weekend was filled with excitement. On Friday, Mason visited his CDH buddy Riley for a playdate. They had lots of fun. Riley's mom and I dressed them up in their costumes and took a few pictures. I don't think either boys really enjoyed this part, but we sure did :)

Mason's Grandma and Grandpa Ellinger came down for a weekend visit as well. We dressed up Mason and decided to take him to trick-or-treat at a couple of neighbors houses. We didn't take him out any further since it is cold and flu season. We managed to get him out before many other kids were out to avoid germs. We spent the rest of the evening roasting pumpkin seeds and handing out candy.

Now for the pictures you have all been waiting for :)

Pumpkin Patch & Cider Mill

Last weekend we took Mason to our favorite local Pumpkin Patch and then to our favorite Cider Mill. He really enjoys getting out, especially when we are outdoors exploring things. He loved the pumpkin patch and was even willing to touch the pumpkins. At the Cider Mill he loved touching the corn stalks and hay and even had a chance to sit on the tractor with his Dad.

I love this picture because he was looking back and smiling at his Dad :)

Exploring the pumpkins....

Cider & donuts with Mom (can you tell who inherited my super fair skin?)

With Dad by the cornstalks

Sitting on the tractor with Dad

Big Brother

We have a very special announcement. As you can tell from the title, Mason is going to be a big brother! We are all very excited to add another member to our family!

We discovered in August that we were pregnant and I am now 12 weeks along. Our official due date is April 27th. We just had our first early ultrasound on Friday and the baby looks great so far with a strong heartbeat. We have some detailed testing coming up next week and again in 6 weeks.

The recurrance rate for isolated CDH (which is what Mason was born with) is only about 2%. It is usually referred to as a sporatic event, having no known cause as of yet. Even though the risk is low, it will always be in the back of our minds until the baby is born.

When we tell Mason he is going to be a big brother, he smiles :)

Update & Pic's

I don't really have any good excuses for why I haven't posted in a while. I guess I decided to take a little break to get some much needed house cleaning and organizing done.

In the last few weeks, we have been enjoying whats left of our nice weather before the real cold stuff comes. Mason has really developed a love for being outdoors and I try and make it a point to take him out everyday. When it is colder, sometimes we just sit on the porch for a while and watch for Dad to come home. Today the weather was nice so we pushed him around in his wagon and let him play in his Cozy Coupe.

We have had some routine doctor appointments and follow-ups. Mason had his well baby check a few weeks ago and received some vaccines. To our surprise, he only cried a couple of times and once I picked him up, he stopped. Yesterday we had a follow-up with his Pulmonary team. They were very happy with his progress. He was even recovering from a cold and his lungs sounded clear and equal. Since he is doing well with growing and lung function, he will not need the shots to prevent RSV this winter. This was great news. We received a referral to a Pediatric Dentist since some of Mason's upper teeth are coming in discolored. This is most likely due to all of the antiobiotics he received during his NICU stay. The good news is that adult teeth start to form around 4 months, and by that time Mason was home and off of all antibiotics.

A couple of weeks ago we took Mason on this first trip to the zoo. We met up with my sister and Mason's buddy Austin and his parents. It was a pretty chilly day, but we had a lot of fun. We saw lots of animals and I think Mason enjoyed himself. We waited until the end to take the boys on the train, but they both fell asleep before we could ride. We decided to let them sleep :)

Mason and his partner in crime.

Pick me up please...

It's only a matter of days before I can pull this open....

Can I please have that camera?

Back to School

The big news last week is that Mason is back to school. He attends the Early On program through the school system. This year he is attending playgroup on Tuesday mornings and he has Physical Therapy on Wednesday morning. Last year, PT was at home, and this year it will be at the school. Mason has also been allowed to attend playgroup for the whole school year. Our Pulmonologist is very happy with his lung function and sees no issue with one hour of exposure per week. This is great news. However, we will still be on lockdown this winter and will need to avoid public places and contact with other children (besides the 1 hour of playgroup).

Our little guy is crawling everywhere and has even developed a "turbo" speed for chasing after the dog. He is doing great with pulling up and cruising the furniture. Stairs have been his latest milestone. He is now able to go up our entire flight of stairs (about 12 steps)! We have been right behind him making sure he doesn't fall. We have already installed a baby gate at the top of the stairs and now we will be heading out to get one for the bottom too.

Mason is also starting to develop a vocabulary. Besides his usual ma-ma, da-da, ba-ba, and boo-boo, he has added ball and dog. We have been working hard to "label" objects for him and have been asking him to repeat words that we say. He does a good job with ball and dog.

Here are some pictures of Mason enjoying the outdoors a couple weeks ago. His Grandma and Grandpa Ellinger were over for the weekend helping us clean up the jungle that came with our house :)