Thursday, January 29, 2009

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!

Wednesday, January 28, 2009

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.

Thursday, January 15, 2009

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.

Tuesday, January 13, 2009

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.

Wednesday, January 7, 2009

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:

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!