Pre-Christmas Update

Lots has been happening since my last post. I'll start with the ER visit. I bet you are thinking that it is Mason. Not this time! Friday night, Mia snuggled up next to me on the sofa and I noticed that she was a little warm. She had said a couple of times that her throat hurt but nothing major. Boy was I wrong. Her temperature was 101.5 and her throat looked horrible. So, Mia and I went to the ER to get treated for what I had correctly assumed was strep throat while Daddy and Mason hung out at home. Saturday and Sunday we attempted to keep the kids apart. Time will only tell if it worked. After two days of antibiotics, they were allowed to play again just in time for Mommy to get some pictures of the two of them for our Christmas cards. Yes, I am running a little behind! Here is one that I snap where they actually look like they are having fun. We finally took Mason in to get his lab work done that the cardiologist had requested and she called on Friday to tell us she had some changes that she wanted to make. Basically, Mason's potassium and chloride levels were a little low so she decided to change his diuretics from three times a day to twice a day. This was a good change! So, we are watching that he doesn't start to retain fluid and get puffy. Please send good thoughts and prayers that he make this transition without any bumps.

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!

I hope all of you have a safe and happy holiday season!

Cardiologist Update

The cardiologist said that Mason's echo looks the same as last time so that was good news! Appears that Mommy was worrying for nothing.

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

GI Specialist
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.

Haircuts

It was haircut night at our house last night for Mia and Mason. Mia decided that she wanted to go short and it looks really good and she loves it. Mason's hair had gotten so long that it was starting to have tangles in it each morning. He looks like a big boy now. Tonight I thought I would try to take a picture of them to share and it turned into quite the project. Here is how it went.

This was the first one and looks pretty good if you can't see that Mia has chocolate around her mouth from the candy bar she ate.

Mia now has a clean face but Mason was so excited that he couldn't stop moving and biting his hands.

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!

Alright, I'm done!

Happy Fall!

Wow, okay, it's been almost 6 weeks since our last update. It's so much easier to update these things when you are removed from the working world but I would rather be working than stuck in a hospital. So a 6 week update it is! Which is a good thing.........

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!

Ignore the thumb and pay attention to the chubby cheeked one!

One of Mason's favorite past time activities....the lazy Susan!

This picture was taken by a complete stranger at the pumpkin patch. From left to right: Mason, Mia, Amy, and Baldy.

Future Pumpkin Pies of America (PPA)!

This one is for Amy. She hates washing syringes each week and she thought she would take a picture of Mason's weekly syringe stockpile so you could feel some of her pain too!

2009 Pictures

Also, check on the new 2009 Pictures Page. The link is in the left column. I will try to add more soon and get a 2010 Picture Page as well.

More Mason Firsts!

Mason seems to learn something new everyday. It is amazing! Here are some recent one.

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.

Mason brushing his teeth.

Feeding

So, he isn't eating yet but we have made a little progress and I think it has a lot to do with him being more comfortable giving kisses. He has been putting more things in his mouth. Even kissing the cookies he plays with. He is doing really good.

Walking

Mason will stand at the sofa and walk back and forth. I have also tried to get him to stand by himself. I think he can do it but he gets scared and excited (he laughs the whole time we try). We will keep practicing!

Being Funny

Mason is always cracking us up which is not new. Mason recently took a liking to his sister's new sunglasses she brought home from school. He immediately put them on and wouldn't take them off. He didn't even care that they were on upside down. He put them on and wore them crawling all over the house.

Mason in sissy's sunglasses with a big smile (look at all those teeth)!

Mia's Dancing

Mia has started taking dance lessons. She is taking ballet and tap every Tuesday evening. The girls are so cute in their black leotards and pink tights. I think she enjoys tap more - can you guess why? Tap is so much louder than ballet! She seems to like it and comes home telling us all about 1st Position and 5th Position in Ballet and Shuffle Steps in Tap. And I have to admit she does look prett cute in her outfit but I know I am bias! See pictures below.

Check out the Ballet Box that she uses to take her clothes and shoes to class.

Always striking a pose!

Trip to the Zoo

While Daddy held his fantasy football draft at our house, the kids and I decided to take a trip to the zoo. By the way, Randy is very excited about the team that he drafted. Hopefully, another successful year of fantasy football for him. This was also Mason first time riding facing forward in the car. Since he has officially reached the 20 lb mark, we have turned his carseat around. I think he likes it. And now that he can see me, he sits in the backseat and says "Mommy" and when I turned around he is just smiling. Two minutes later he says "Mommy" and again I turned around and get the same smiling face. This game repeats itself about every 2 to 5 minutes. He thinks he is so cute - he's right! Mia will also like that she won't have to turn her head to watch a movie with Mason. We can now hang it between the seats and both kids should be able to see it just fine.

Mason's first ride in the car with his carseat facing forward. Both kids are excited to be heading 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.

Mason, Mia, Star (babydoll) and monkey (blue juice bottle - we had to make sure that we got it in the picture) taking a break and looking at the buffalo.

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!

This picture was taken by Mia. Didn't she do a great job? I am so proud of her!

Feeding Therapy

Mason has feeding therapy once a week. Cheryl from Rainbows United comes to our house and plays with Mason. We start out in the living room and play with toys so that she can see how he is developing. She was really excited to see him walk back and forth at the sofa. He has really gotten strong.

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!

Mason got a graham cracker stuck (yes, stuck) on top of his head from the baby peaches!

Check out his tray. They have a good time making a mess and that is only half of it. You should see the floor!

Mason's Firsts!

Mason has reached a few milestones over the last couple of weeks!

Weight

We went to see Mason's pediatrician for the first time since the placement of his G/J-Tube and, drum roll please, Mason weighed in at 20 lbs 2 oz which puts him in the 2.35 percentile for his age! He is still a little guy but he has pretty much put on one and a half pounds since his surgery. Go, Mason!

Here is my sweet little man! Look at his beautiful face without the tube taped to it!

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.

Talking

Mason 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!

Mason's playing the Show Me game.

And this is where Mason gets his long tongue!

Mia's Frist Day of School

Mia is officially a Kindergartner! Her first day was a 1/2 day on Thursday. Mia was not only welcomed into her new classroom by her new teacher, Mrs. Prim, but also 5 of her friends from last year. They started chanting her name as we were putting her things away. I think we have a little social butterfly on our hands! Mia is very excited about school this year. She will be having PE and Computers for the first time and continuing in Music as well. Based on the letter from the teacher, this will be a big year for Mia. It amazes me how much these little brains can absorb so quickly. Here are a few pictures.

Soooo sweet!

Mrs. Prim sent each kid home with a balloon with a secret message inside!

Mason is also very excited that his sister is back to school. He now has Grandma all to himself!

Mason being Mason

In true Mason fashion, he has developed a complication from the new G/J-Tube. Sunday evening, stomach contents started leaking out around Mason's new tube. At one point, the front of his shirt was yellow. After trying to manage it ourselves, we placed a call to U of M Pediatric Surgery as we had not had a chance to talk our the local doctors regarding Mason new "hardware". The doctor was able to give a list of things to try but they did not work! Fortunately, we had a followup appointment with Dr Knight, Wichita surgeon. He quickly settled our frazzeled nerves and stated the obvious, "he has a leaky tube." He said that we need to try to stabilize the tube so that it does not create a bigger opening and keep the site as clean as possible. Try explaining to a one-year old that he needs to keep the tube from moving! Dr Knight's calming demeanor was very reassuring. We can manage this just like everything else that Mason has thrown our way.

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!

Back in Wichita

Our trip is done! Mason decided to wake us all up early on Tuesday so we hit the road at 8:30 and arrived in Wichita around 5:30. The second day of driving is always the hardest. Both kids were done being in their carseats and, to top it off, the dvd player stopped working. We made a quick stop at a Wal-mart before arriving in Kansas City and after purchasing a new charger for it (I would have bought a brand new dvd player if I had to), we were on the road again with a quiet back seat! It is amazing how a little screen can provide so much enjoyment. Mason took a little nap shortly after we started the day and did not sleep the rest of the way. He was a very grumpy little man by the time we got to Emporia. The last hour was rough for him and his parents. Mia, on the other hand, decided to take a nap during this time and was able to sleep through Mason's fussiness. Why is it when you are a kid, you can sleep any where and in any position? Her head was bobbing so much I was afraid that she would get whiplash!

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.

On our way HOME!

Mason was discharged from the hospital late Sunday afternoon. The doctors encouraged us to stick around Ann Arbor for another night to make sure we were comfortable with Mason's care. We were glad that we took their advice because, Mason being Mason, through us a curve ball Sunday evening. He started having a little blood in his diaper! We had seen this before so we did not panic. After Mason's surgery, we were working with a dietitian on changing his formula to a more complete one for his age. We have tried this at home with other formulas and have ran into issues so we were not surprised to see this. The pediatric surgery clinic worked us in and we all came to the same conclusion - reaction to the formula. So, back to Alimentum. We are going to let his body heal from this surgery and then try again at home. The surgeon told us that there was no concerns and that we should head home and manage it all in Wichita. We left Ann Arbor around 2pm eastern time and have made it as far as Effingham, IL which we believe is the halfway point. The kids continue to do great in the car. Mason is a little more fussy than the trip here but who could blame him. We can't wait to get back to our house and back to our "normal" lives. Hope to see you all soon!

Still in Michigan

We are still hanging out in Michigan and will most likely be here another day or two. Mason has had discharge orders since Friday but neither Amy or I have felt comfortable letting the hospital discharge Mason yet. If we lived in town it would be a different story, but when you are a 1,000 miles from home you don't want to leave town until you are more than ready. Then he got a little dehydrated so it is a good thing we stuck around so they could give him some fluids by IV. Even when he does get discharged we will probably stick around Ann Arbor an extra day to make sure he is ready for the ride home. Unfortunately we learned our lesson last time and were forced to travel straight home without getting any rest. We were literally 7 hours from Ann Arbor and 7 hours from Wichita in a town called Effingham, Illinois when he started having some issues. I would rather forget that experience.

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.

Surgery Day (Updated!)

Mason's surgery went as expected and he is resting just fine this evening. We got to see him for the first time around noon I believe - trust me Amy will correct me on that - and about 15 minutes after that he was in Mom's arms and has been there pretty much ever since. I held him for roughly an hour around 4 o'clock but before and after that he wouldn't let Amy put him down. When Mia and I left the hospital around 8:30 tonight he was still in Mom's arms. Although Amy texted me shortly after we left to let me know he let her put him down...so at least she got to eat the yogurt I brought her up from the cafeteria.

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.

Consultation Day

The consultation went well today. The doctor decided that Mason needs a G/J-Tube. In non-medical terms, that means that they will surgically place a tube through Mason's tummy into his stomach (G-tube) and it will continue down into his intestine (J-tube). We were also wondering if Mason would need an additional stomach surgery called a fundoplication. He actually said that children with HLHS, in his experience, do not do well with the fundoplication. That tidbit of information was worth the 1,000 mile drive as the Wichita surgeon was heading down that path. The G/J-tube will allow us to feed Mason into either his stomach or intestine. This will be beneficial when he is having stomach issues and throwing up a lot. I think the doctor and staff were shocked and somewhat amused (I swear I saw a smile on his face) when we said that we were feeding Mason every 90 minutes 24 hours a day. His exact words were, "how did you come up with that schedule?" When we told him that Mason had not gained any weight from March to June until we switched to this schedule and Mason had gained over a pound in two weeks, he quickly understand why Randy and I have been sacraficing sleep in order for Mason to get the nutrition that he needs. So, they are working us in on Wednesday. We are not sure what time yet. They are suppose to be calling tomorrow to let us know.

So, tomorrow we have a free day before Mason goes into surgery. We have big plans. Mason gets to see his girlfriend, Jillian. She also has HLHS and the two of them shared a room in ICU for almost 2 months. We miss her family and can't wait to spend the day with them. I am expecting more pictures tomorrow!

Speaking of pictures, here are some from this trip so far.

Here is Mia on the pier at Lake Michigan. The lighthouse in the background was really neat!

Mia first time at the beach! She loved it! It was a good surprise to stay at such a nice place and it was on 80 degrees! Beautiful!

Daddy and Mason waited on the pier while Mia and I ventured into the water.

After Mason's consultation today, Mia only had one place that she wanted to go - the 8th floor! This is the family resource center and it is on the top floor of the children's hospital and has a great view of Ann Arbor. It also has a great rooftop playground. Here is Mia striking a pose on her favorite toy!

I'm not sure who had more fun on the playground! Just two kids enjoying the zip-line!

After we left the hospital and had a nap, we had a late lunch and then went to the mall. Mia had a great time on this bungee/tampoline ride in the mall. She got so high at times that we were afraid she was going to hit the lights in the ceiling! She is already asking if she can do it again tomorrow.

We made it!

After 15 or 16 hours on the road we are finally here. We stayed in St. Joseph, Michigan Saturday night before finishing the trip out on Sunday. Making it across the Michigan state line was a small victory on Saturday with both kids in the car. Actually both did really well. Mia did a great job entertaining her brother. Mason hit his limit though around St. Joseph so it was the right time for all of us to stop. We had no idea where we were going to stay but then we decided to stay somewhere along Lake Michigan so the kids could see the lake and step foot on a beach (something Mia has always wanted to do). We couldn't have picked a better spot. St. Joseph is right on the water. It was one of those places that makes you think: "Why do I live in the middle of nowhere?" Oh yeah it's called jobs, family, KU basketball, etc....the important things.

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.

On our way to U of M

Today starts our trip to Michigan for Mason's G-tube surgery. Randy and I decided that we would try to break up the trip a little so we are attempting to leave tonight as soon as we got off of work. We plan to stay at Granny's house tonight. Mia is very excited about this. I don't think she realizes that we will only be there long enough to sleep and then on the road again. Yes, the whole family is coming on this trip. Mia was given the option of staying at Granny's or going to Michigan. I was shocked to here that she wanted to go with us. She said that she wanted to go to the 8th floor. This is the Family Resource Center at the hospital that includes an outdoor playground from the top of the building. It is amazing! I think she is also interested in seeing her favorite nurse, Sarah, again. If you remember, this is the nurse that she named her life-size Barbie doll after. Well, it is 4 am and I must get Mason's food going and lots of things to do before we can leave. Seems like I leave everything for the last minute but I'm not sure when I would have time to get it done sooner. We will update you all when we get to Michigan. Please keep Mason in your thoughts and prayers for an uneventful surgery and an easy recovery so that we can come home quickly.

Amy

Mason's First Haircut

Mason's hair has gotten so long. Mommy has been asking Daddy to get it cut for at least 3 months now. Daddy finally agreed. He looks like such a big boy now! I was so worried that he would not react well to the haircut but, as always, Mason never ceases to amaze me. He did wonderful. My hairdresser, Audrey, was so nice to come to our house to cut Mason's hair. I figured that Mason would be extremely intimidated at the hair salon. So, we set him in the high chair and turned on the Mickey Mouse Clubhouse DVD and he sat still and smiled for most of the time. He did give Audrey a few "looks" when she would spray his hair to wet it but he did awesome! Here are some pictures of the big event. Thanks again, Audrey, for coming to the house!

BEFORE:

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!

One Year Ago

This weekend marked the one year anniversary of the day we took Mason home from the hospital. It was exactly 3 months - exactly 13 weeks - from the day that Mason was admitted to U of M. What a crazy ride that was! Since there were never any beds on the general floor, we were discharged out of Moderate Care. I remember thinking that I had never actually cared for Mason throughout the night. This was going to be the first time we had spent a complete 24 hours with him by ourselves. I had no idea how many times he would wake up in the middle of the night and he was 3 months old. I had never laid beside him in a bed and snuggled. I was so scared but so excited. The next 2 days we spent driving home across 5 states and he did great in the car. A year ago seems like such a long time ago yet the memories of our 3 month stay at hotel Mott are very vivid. And Mason has grown so much since that day. One word comes to mind - WOW!

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.

The First Blog.

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!