Tuesday, December 21, 2010
Pre-Christmas Update
Mason is constantly a source of entertainment in our house. I think he gets this from his sister! She has definitely taught him how to be dramatic. He frequently "hurts" his hand while playing and whimpers until you kiss it. Mason has also perfected his fake cry. I think he has Grandma fooled! He is still not walking but is so very close. He has taken a few steps on his own but is not very confident yet. It is only a matter of time. For those of you who have seen us chase after Mason with his feeding pump bag can understand why we both have mixed feelings about the day he takes off running. It is hard enough to keep up with him when he is crawling. We are in for some trouble!
Lastly, I wanted to share some pictures from this weekend. Mason loves to play under the kitchen table. So, we drag the feeding pump bag and put it under there with him. Not sure what the fascination is but he seems to love to walk from chair to chair under there. At about nap time on Saturday, he crawled under the table and laid down. He continued to play with the refrigerator toy constantly pushing the button to hear the song. After a while, I realized that he would delay pushing the button until it "mooed" at him. He was going to sleep but the toy kept waking him up! So, I turned it off and Mason took a quick nap under the kitchen table!
Monday, November 22, 2010
Cardiologist Update
The appointment was rough - and that is putting it lightly! The first thing they do when we get there is get his weight, height and head measurement. He screamed the entire time! Then we are taken to the smallest room ever to get an EKG, blood oxygen saturation and blood pressure. Well, we only got the stickers on for the EKG. He screamed the entire time! Dr. Battiste came in and told the nurse that we would try to get it all in the Echo room where we could put his favorite DVD in the TV and hope that he calmed down. So, the doctor still had to do her physical assessment. He screamed the entire time! Off to the Echo room where we get a blood oxygen saturation of 84 which is a little low for him but are we surprised because he screamed the entire time! (starting to get the picture?) Next was the EKG. So, I laid him back on the table and she successfully got the reading. He screamed the entire time! We tried to get a blood pressure but no luck because he screamed the entire time! More screaming but he finally settled in and watch the Mickey Mouse DVD that we brought while Mommy sangs to him. I'm sure the doctor and nurse loved it! The last thing was the blood pressure. After a couple of tries, we finally got a good one with only a little response from Mason. I think we had finally broke him down. We had a few questions for the doctor and when she walked out of the room, Mason said "Bye!" with the biggest grin. Mom and Dad were worn out. Mason's next appointment is in four months. We do need to go by the pediatrician's office to have some blood work drawn. I'm sure that will be lots of fun because he will be screaming the entire time!
We are headed to Missouri to see my family for Thanksgiving. This will be the first time that a lot of my family has met Mason. I am very excited and hope that everyone is healthy enough to meet our little guy. Saturday, we will head back to Kansas with a stop at Randy's brother's house for another Thanksgiving get together. What a difference a year makes! We are very thankful this year.
On a related note, I volunteered to drive for Mia's field trip last week and noticed a craft project on the wall in her classroom. Each child was given a feather of the turkey's tail and asked to put on it one thing that they were thankful for. Mia's said, "I am thankful for my Mason." I also learned another interesting thing about Mia during parent-teacher conferences. Each morning at Mia's Christian school, Mrs. Primm goes around the room and asked each child if he or she would like to pray. Mrs. Primm said that Mia always prays for her brother to get better. She said that Mia has even told some of the other kids about Mason and they sometimes pray for him, too. I am so proud of her!
Hope you all have a wonderful and safe Thanksgiving!
Doctor Appointments
We took Mason to see a GI Specialist from Children's Mercy in Kansas City. Dr. Jack Daniels (not kidding!) comes to our pediatrician's office once a month to see children in this area. The appointment was great. He has a lot of ideas and we are excited to work with his team to get Mason on a more "normal" feeding schedule - even though he won't eat on his own. The first step will be transitioning Mason's feeds from his intestine to his stomach. We left with some homework - need to talk to both the Cardiologist and GI Surgeon and get some answer to some questions. This is going to be a team effort but we are really happy with how the appointment went.
Cardiologist
Mason sees his cardiologist today for the first time in four months. Yes, FOUR MONTHS. It is crazy that we made it this long. Last year at this time, Mason has appointments every week! What a difference a year makes. I ask that you all send your good thoughts and prayers for a good appointment today. There have been days lately that Mason's color does not look as good as it had in the past, as least in my opinion. I try not to focus on it knowing that he can have good days and bad days but I still worry all the same. Recently, he seems to be more tired but he is also much more active and has not been sleeping all that well. Hopefully, the recent changes that we have noticed are all explainable by "normal" baby activities - such as teething and tough time sleeping. Please keep us in your thoughts and prayers this afternoon. Please also send happy thoughts to Mason so that he does not freak out around the doctor and nurse. He has become very sensitive around those with stethoscopes! I will post again with results of the visit.
Wednesday, November 10, 2010
Haircuts
Good picture of Mia but you can see another one of Mason's habits is biting his tongue in the left side of his mouth. This started when he was first getting teeth.
Cheesy Mia smile and there is that tongue again!
Again Mia is a natural poser but what is that Mason doing. I guess he wanted everyone to know that we do a really good job of washing his neck - all clean!
Tuesday, November 2, 2010
Happy Fall!
Mason is growing like a weed. Well, a chubby weed. He went from being almost off the charts to, I think, the 5th percentile in weight just recently. An awesome achievement no doubt. The G/J surgery was worth it but we continue to have challenges in that area along with getting him to eat. Our biggest challenge here in Wichita is finding someone willing to take Mason's stomach challenges on. We find that most doctors are interested but with his overall heart condition they are not comfortable doing certain procedures, tests, etc.....Or at least we can't find an anesthesiologist who is. We continue to press on. If his stomach is the biggest issue we have to deal with right now, I guess we can't complain too loudly. However, I want someone to help my son!
That said the kid never ceases to amaze us. He is a natural born clown and I am okay with admitting he gets that from his dad. He has taken a liking to wrestling and I can't hardly pick him up now without him trying to push me over. He knows roughly 25-30 words now too. Half of which come from Mickey Mouse Clubhouse. "O'Toddles" to name one. He recently learned part of a Justin Bieber song so not only do I get to listen to that from Mia, now my son is singing "Baby, Baby, Baby, Oh........". I am sure there are more but I don't want to make this too long. We did go to a pumpkin patch recently so we thought we would share those photos along with some others. Enjoy!
Saturday, September 18, 2010
2009 Pictures
More Mason Firsts!
Talking
Mason loves Mickey Mouse Clubhouse on Disney!!! He gets so excited every time it comes on or if he know that you are going through the steps to pull up an episode on the DVR. If any of you watch it, you know about Toodles. Whenever they need a tool, they say "Oh, Toodles". Mason now says that with Mickey and his friends. So cute! Mason also can announce when he has passed gas by saying "Toot". So funny and so stinky!
Giving Kisses
Mason now will give kisses when asked. This may not seem like a big accomplishment for a 17 month old but for a 17 month old with oral aversion, it is a very big deal! This is a huge step for Mason and Mommy loves it. What's better than getting a kiss from your kids? Can't think of much.
Brushing Teeth
Mason loves to brush his teeth. If you ask him if he wants to brush his teeth, he gets so excited he can barely contain himself. So, I put a little water on his toothbrush and hand it to him. He holds the brush to his teeth and then moves his head back and forth. He hasn't figured out that he is suppose to move the brush rather than his head but it works. He even feel asleep with it in his hand the other night because every time I tried to take it away, he yelled at me.
Being Funny
Mia's Dancing
Wednesday, September 1, 2010
Trip to the Zoo
So, off to the zoo. We made the rounds starting with the flamingos, penguins, reptiles, bears, prairie dogs (so cute), buffaloes, tigers, gorillas and giraffes, with a stop at the food court for popcorn and fruit punch. And the visit ended in the gift shop. Mason picked out a stuffed monkey and Mia got an owl pillow. Mia and I would hand Mason different stuffed animals. He has a thing for panda bears and zoomed in on those but we thought he already had enough of those. Once he grabbed ahold of the monkey, he wouldn't let it go. The boy knows what he likes. Mia had a little harder time picking something out but in the end got the perfect gift.
We made it to the Tiger Exhibit just in time to see their training session. This tiger when standing had to be over 8 feet tall. Impressive! All that is between the trainer (and the rest of us) was a fence made out of rope!
Feeding Therapy
Then we move to the kitchen and the real therapy starts. Cheryl and Mason play with all kinds of things. Last weeks session included baby peaches, mandarin oranges, chips and graham crackers. The goal is to get Mason exposed to different textures and smells. We have been told that 75% of eating is smelling so getting Mason comfortable with smells, particularly strong smells, is a big step. He is still not eating anything but he is getting a lot of tastes most of the time they are accidental. He even likes to tease us and do a "drive by" where he grazes his lips but doesn't actually open his mouth. Below are a couple of pictures from last weeks session. As a parent (and control freak) you really have to let go and let them make a mess. Cheryl and Mason do a good job of that!
Saturday, August 21, 2010
Mason's Firsts!
Crawling
He is officially crawling and getting faster and faster every day. You really have to stay on top of him so that he doesn't get to the end of his tube.
TalkingMason has learned so many new words these days. The most recent and impressive is the name of our dog, Rozwell. Rozwell has been staying with Grandma and Grandpa since Mason's birth and has come to visit a couple of times. Rozwell is here with us this weekend and Mason instantly repeated Roz's name when prompted and whenever he sees her.
Playing Games
We have a number of games that we play with Mason ranging from your typical Peek-a-boo to homemade games such as Show me. Mason can now show us where his hair, toes, mouth, "chunky monkeys" (aka chubby thighes), and tongue are. And boy does that kid have a tongue! He gets it from his sister. You will understand as you scroll down to see the pictures. Mason has also created his own game of "Look at me in Momma's sunglasses." He loves my sunglasses and takes them off my head whenever he has the chance. He has recently started putting them on and if you are not paying attention, he will call your name. I was reading the paper and hear "Momma". I look down to find him with my sunglasses on and the biggest grin! Loved it!
And this is where Mason gets his long tongue!
Mia's Frist Day of School
Tuesday, August 10, 2010
Mason being Mason
As expected, Mason has figured out how to move. He is pretty much crawling every where. He is not as fast as he was with his "army" crawl but it will only be a matter of time. He is back to chasing his sister and beating on her door when she goes into her bedroom and shuts the door. He is getting back to his normal self with a few added bonuses. He has now learned how to scream for no reason other than he loves the sound of it. There was one day on our way back from Michigan that we were in our hotel room and Mia was having a "moment". She expressed herself with a scream which we quickly tried to stop only to have Mason continue the screaming for her. We could not help but laugh. Mia says, "Thank you Mason for taking the attention off of me so that I didn't get in trouble."
That's it for now. I was suppose to go back to work this morning but I didn't think it was fair to leave Grandma with Mason and his new leaky tube without training her first. She has had a lot of experience with this type of stuff so I think she will do great. So, I head back to work this afternoon. I have already been through my 500 work e-mails so I should be ready to go!
Wednesday, August 4, 2010
Back in Wichita
Randy had to go back to work today. So, it was just Mommy and the kids. Mason is trying to figure out how to move about with this new tube. He has spent most of his time in the past "army" crawling around the house. Unfortunately, he has quickly figured out that this does not feel good to lay on his stomach. It is sad to see his just sit there when he was so mobile before the surgery. He just sits on his bottom and rocks and whines. He has made a few attempts at crawling. I think this new tube is going to force him to really crawl. My prediction is that he will be officially crawling all over the house in a week.
Mamma and Pappa came for a visit on Wednesday. Mason was so excited to see his Mamma. The visit was good and Mia even decided to go spend the night with them in Newton. Thursday, Mamma is coming back to start learning how to care for Mason's new feeding tube (along with Mommy). We are still trying to figure out the best way to secure Mason's tube to make sure that it heals properly and, most importantly, does not come out! We have a followup appointment with the Wichita surgeon on Monday and I also placed a quick call to the pediatrician's office and the feeding specialist. We should be back on track next week.
Tuesday, August 3, 2010
On our way HOME!
Saturday, July 31, 2010
Still in Michigan
We still don't have any photos of him post surgery but once we do we will post them for you to see. He just now, today, started looking and acting like his old self. In the meantime we will share some of the photos we took from our trip to see Mason's HLHS friend Jillian and her family. The visit was filled full of bonding, great Mexican food, a vicious dog attack, and a trip to Lake St. Claire. You can actually see and smell Canada from the US side of Lake St. Claire. I am now 1% Canadian from my brief time on the Lake (true story).
Two HLHS babies doing what HLHS babies do, hanging out on the beach.
This time up close. Just think, chances are there were no other pairs of HLHS babies hanging out on a beach (any beach) that day. Rare stuff.
Mia and her friend Julia playing.
This goes without saying: just another day for two great looking guys.
Behind Mason is all things Canada.
Wednesday, July 28, 2010
Surgery Day (Updated!)
There is a chance he could be discharged on Thursday....BUT....there is still a lot we have to learn about the G/J tube and when they started feeding him tonight for the first time they did so using a new, higher calorie formula. I'm a little concerned he may have issues with that given how sensitive he was to us introducing new formula's at home. I wished they would have started him back out on his old formula and then let us slowly introduce new things at home. I guess we'll see what happens. What do mom and dad know!
Thanks to all of those who kept Mason in their thoughts and prayers today. It was a fairly 'simple' procedure compared to the heart surgeries Mason has been through, however, as we HLHS parents know anything can happen at anytime. Let's hope for a quick recovery, discharge, and no complications. As soon as we get some pictures of the little guy without a NG tube taped to his face, we will post them. We'll keep you updated.
Monday, July 26, 2010
Consultation Day
Sunday, July 25, 2010
We made it!
Our first consultation is first thing Monday morning. It's with one of the pediatric surgeons here at U of M. We won't know what the next week or two holds for us until after that initial consultation. They may want to do another consultation/exam or two before doing any kind of surgery. Hopefully a g-tube is all he needs and whatever surgery he has goes smoothly. We really want to get that tube out of his throat so he will be more inclined to eat and grow. It would also be nice to see him with out a feeding tube taped to his face. He's had that thing on his face pretty much since his first week of life. What's interesting is that following his 2nd heart surgery one of the doctors up here told us in passing, out of the blue, if you are going to do anything else the best time is between the 2nd and 3rd heart surgery. So hopefully now is the right time.
Well tomorrow will be interesting. On top of the appointment we told Mia we would take her up to the family resource center on the 8th floor of Motts so she can play. She hasn't forgotten that place one bit. We'll add some pictures later. We'll keep you updated as well.
Friday, July 23, 2010
On our way to U of M
Amy
Saturday, July 17, 2010
Mason's First Haircut
Happy little man!
DURING:
"What is this woman doing to me?"
"Doesn't everyone love Mickey Mouse as much as I do?"
"This episode is such a nail-biter!"
"That Goofy is so funny!"
AFTER:Such a big boy!
Monday, July 12, 2010
One Year Ago
Tonight Mason fell asleep on the living room floor snuggling with his Panda. I don't know what it is about Panda bears but he loves them. During our last trip to Michigan, Daddy bought Mason a stuff Panda and he can't get enough of it! It is so cute to watch Mason's reaction when you say, "Where's Panda?" He gets so excited just looking around the room until he finds him. Once Mason gets his hands on him, Panda received a big bite on the nose. That must be Mason's way of showing affection because his sister has received the same reaction when she gets that close to Mason's face. And for a couple of days, the bite marks can be seen on her nose! Tonight when he fell asleep with Panda, I snapped a few pictures of my sweet little man and his buddy.
Friday, July 2, 2010
This is now the new home of updates on Mason and his family. Hopefully, this will be more user-friendly for his parents to update.
Mason has had many developments since his last surgery in March. He is crawling in his own Mason way. He is talking and can say Mama, Dada, Sissy, bye and ball among other words that we can't quite understand yet. He is currently getting his first set of molars - now if he would only learn how to use them for good instead of evil! By this I mean, if only he would use his teeth for eating instead of biting his sister. There has been on more the one occasion that Mason has left teeth marks on Mia's nose. We try to tell her to not get so close to his face but she keeps going back.
Mason is still 100% dependant on a feeding tube for his nutrition. During the last few months, we have tried to make some changes to Mason's feeding schedule and formula and he has not taken to them very well. So, after long debate we went back to his normal formula and made some tweaks to the amount of volume that he gets and how often we feed him. I think we have finally found the combination that works for Mason because he had not gained any weight since his surgery in March until the last few weeks. After two weeks on the new schedule, Mason gained over a pound! That is right - 1 pound 1 oz in two weeks - that brings him to a weight of 18 lbs and 13 oz. We go back in a couple of weeks to make sure that he is still gaining. We have also decided with the help of local doctors that Mason needs a G-tube. This is a tube that will go straight into his stomach rather than routing it through his nose. However, this will require another surgery for Mason which we have tried to avoid. We consulted with a local surgeon and when he spoke to the local anesthesiologists, they recommended that we go back to Ann Arbor, MI for the surgery. We were warned during our last trip to Michigan by the nurse practitioner that a lot of anesthesiologists will not touch children with HLHS due to their unique hearts. So, we have an appointment at Mott Children Hospital on July 26th to consult with the surgeons up there on what the best route is for Mason. We know that he needs the G-tube but there is a possibility that he will need an additional stomach surgery for reflux. We will let the doctors make that decision. It took a long time for us to come to terms with this but it is the best answer for Mason at this time. We will keep working with the Feeding Specialist to get Mason to eat by mouth and we are hopeful that removing the negative effects of the tube from his nose and running down the back of his throat will help him to make progress. Our trip will not only be to the hospital as we hope to be able to spend some time with our Michigan Heart friends, the Lentine's. We miss them terribly and can't wait to see the reunion of Mason and Jillian. They were roommates at Mott for some time and future prom dates!
Well, that is it for now. We are preparing to make our second trip back to Missouri today to visit my family. Mia will be spending the week with Granny and can't be more excited. She packed her own bag last night and it is bursting. I hope she realizes that she is only staying a week rather than the rest of the summer!