Coughing and more coughing

So, Mason got a cold just a couple of days before Thanksgiving just like the rest of us. But Mason's has never gone away unlike the rest of us. Two weeks ago we took him to the doctor who listened to him and asked all the questions. He thought Mason just had an upper respiratory infection and said to let him know if it didn't get any better. Another week passes and he still has a cough. The doctor requested that we come in and do an x-ray. What he found on the x-ray surprised him and us - pneumonia. Mason was put on an antibiotic but it did not make a difference. The crazy thing about all of this is that, other than the cough, this has not affected Mason at all. He is still full of energy and is being a typical 2 year old little boy.

So, back to the doctor's office we go today. The doctor listened to him and again Mason sounded clear. Mason's oxygen saturation was 95% today which is the highest that we have seen it so far! This cough does not seem to be affecting it at all. Now we are trying breathing treatments to figure out whether this could be asthma. Randy and I were concerned that this could be heart related but the doctor assured us that he did not see any indications on the x-ray that would lead us to believe that he is in heart failure. He did have any echo 3 days before Thanksgiving and all look the same as it had in the past. So, that put us more at ease. But we still have no idea what is causing his cough.

I am asking that you send your thoughts and prayers that the doctor can figure out what is causing the cough. Or better yet that the cough is healed. It would really give me peace of mind to know what is causing it. I know Randy and I have been worried.

On to more positive thoughts, we had a wonderful Christmas. Mia and Mason received exactly what they asked for from Santa although I wonder if Santa was watching close enough because not sure they had been good all year! Hope to get the pictures uploaded on the computer to share soon.

Hope you all had a Merry Christmas and have a Happy New Year!

This just in - MASON'S FEEDING HAS BEEN REMOVED!

I couldn't wait to tell everyone that we just took Mason's tube out! We have been struggling with the decision and had been getting multiple opinions on how to approach this from doctors that we trust. We had decided to go with the "let's just take it out and see" approach. See if it leaks, that is. So, we decided tonight was the night. It went really good and only took 2 minutes including taping a bandage on the site. Now we put him to sleep for the night and see if it leaks when he eats and drinks in the morning. There could be a possibility that he could need a procedure to close it but we are hoping and praying that it will heal on its own. Mason did fabulous. As a matter of fact, seeing Santa tonight was harder than taking out his tube! So, here are the before, during and after pictures. I promise they are not bad.

Before

During (no tears!)

After

I am one proud Momma! I couldn't have asked for it to have gone any better. He is such a brave little boy. As I sit here and type this I have tears in my eyes. He has been through so much and has been so brave. Could I have been as brave? I don't think so. He has taught me so much in his short life. I am blessed!

Please keep Mason in your thoughts and prayers that he tube site heals on its own and won't need any additional attention!

Feed Tube is Coming Out!

Mason's cardiologist appointment was torture for all of us. The results were good but it took all our energy. Mason just wasn't in the mood and pretty much cried for the 2 hours we were there. He was starting a cold and hadn't slept well the night before which means we hadn't slept well the night before either. The good news is Mason's oxygen saturation was 94! This is the highest we have ever seen it and it was while he was crying so it could have been even higher. The echo was pretty much the same. The cardiologist was not ready to make any adjustments to his medications at this time so Randy and I will be doing some research on that before we see her again. His next appointment is in 6 months!

Since that appointment, we have been making some phone calls to a couple GI doctors we have seen over the past year or so. We were trying to get some advice on when to remove Mason's tube and what the after care would be like. After some back and forth phone calls, we have the go ahead to remove it. If it continues to leak, he might need the surgeon to put a "stitch" in it to close it. So, now Randy and I need to decide on the big day. I am so excited for this. Mason is definitely aware of it and it does bother him sometimes. He is also becoming self-conscious about it to the point if his shirt gets pulled up, he will immediately pull it down.

Thanksgiving was a good time. We traveled back to Missouri to see my family even though Randy was not feeling well. He stayed in bed all Thanksgiving Day and did not get the participate in the fun and festivities. He didn't have it all bad - there was lots of football to watch! He did recuperate in time to drive back to Kansas on Sunday and stop at his family's party. It was great to see everyone. We have a lot to be thankful for this year!

Hope you all had a great Thanksgiving as well. Thanks for checking in on us. We will keep you updated on how the feeding tube removal goes. Please keep Mason in your thoughts and prayers that his tube site will heal with little discomfort.

Have a safe and wonderful Christmas. We love you all!

Is it really November?

Just thought I would give an overall update on Mason and Mia.

Mason's Eating and Drinking

He is pretty much eating just about anything. I even got him to try broccoli the other day! His favorite food is cheese. Seriously, it is the first thing he says when he wakes up. He gets out of bed and asks for cheese. And throughout the day, he continues to ask for it even though he knows that he is only allowed that one stick of cheese a day. He also loves the Goldfish crackers. We always leave a few on the edge of the table and he grabs and goes. Mason's drinking is still our challenge. He has made a lot of strides in this area but still has room to improve. Mason will only drink water. We keep track of how much he drinks to make sure he gets the required amount each day. He is now drinking out of a regular cup and holds it all by himself. He is so very proud of himself at this accomplishment. His latest thing is to blow bubbles in his cup instead of drinking it! Mason is also now taking all of his medications by mouth. This was a big acheivement since he hates taking his aspirin. After getting some ideas from a fellow heart mom (thanks, Janel), I changed the flavor and he takes his "vitamin" the same time Sissy takes hers. Success! We are so very proud of him!

Here is Mason drinking out of his big boy cup all by himself! What you don't see is the great big smile on his face when he is done. I'm lovin' it!

Mason's G-Tube

Now that we have made these strides with his eating and drinking, we are hoping we are very close to no longer needing Mason's G-Tube (the tube that is connected to his stomach). Mason had a pediatrician appointment on November 1st and the doctor thinks it is time to get rid of the feeding tube! It would be so great to not have to worry about it anymore. My understanding is that all we have to do is remove the tube (which we are trained to do when we were trained on how to change it) and the hole will grow shut in a matter of hours. Although I am very excited to get rid of it, there is comfort in knowing that we have a way to get food or water in him if he ever needs it like if he were to get sick. We also want to make sure the cardiologist is ok with removing it as well and he has an appointment on the 21st with her. More to come on that one.

Mason's Talking

Just like his eating and drinking, this has also exploded. He repeats EVERYTHING! He can now tell us what he wants which he does with a loud voice every now and then. He can be pretty demanding at times! He can now count to 10 and recognizes some letters. Daddy has even taught him what a Jayhawk is. Mason now requests to wear his Jayhawk shirts when changing his clothes and he has a few of them courtesy of Daddy. Randy is very proud of this latest development.

Mason's Party Tricks

Mason has a few games that we like to show off to our friends and family. This first and, in my opinion the most impressive, is his ability to recognize words. We figured out that Mason was recognizing certain things on the TV like the name of our cable provider. Mason received a Magnadoodle for his birthday (thanks, Aaron, Britian and Kasen). We write words on it and Mason reads them back to us. He knows Mom, Dad, Mason, Sissy, and Cheese among other words. There are also a few words that Mason can even spell for us. I know I am his Mom and am biased but I think that is pretty amazing! Mason also loves to play Hide n Seek. He will stand in the middle of the room, pretend to close his eyes, count to 10 and then come find you. In ususal Mason fashion, his whole entire body lights up with excitement when he finds you. I have spent many of my lunch hours at home playing Hide n Seek. I would give up some food for that any day!

Mason's Behavior

Mason is 2 years old. Need I say more? He can be the sweetest little boy and in the next second be just plain rotten! Seriously, he will just come running in from the other room, grab my arm and give it the biggest hug. He also gets way too much joy from making his sister scream. We have tried to give him time-outs. This has been interesting. He thinks it is a game and even puts himself in time-out. What to do????? He has even started throwing things when he gets mad. If there is nothing in sight to throw, he will go to another room and find the first thing that he can make fly across the room. There are times that I have to hide my smile. It is just too funny!

Mason's Upcoming Appointment

As I mentioned earlier, Mason had a pediatrician appointment to see how he is developing and to get his first RSV shot of the season. We were pleased to find out that Mason had been approved for the Synagis shots again this year. He will receive a shot at the first of each month from November to March to help protect him from RSV. These are very expensive shots so there is an application and approval process. Mason may not think this is a good thing but we have to do what is best for him. Mason's second appointment in November is with the cardiologist. She will be accessing if we can start lowering the medication he was put on for his pulmonary hypertension. Based on the heart cath before his last surgery, his pressures in his lungs are normal. This makes me nervous but it would be nice to get him off another med especially the med that causes us so much trouble with insurance. So, please keep Mason in your thoughts and prayers this next month for a good report.

Mia is now in 1st Grade!

I can not believe I have a 1st grader. We have already been through the first quarter and her grade card was really good. Her favorite subjects are Music, Science and History. And her least favorite are PE (she really doesn't like doing squats!). She also wants me to add that really likes recess as well. Her best grades were in Spelling and Bible Verses - that girl has a great memory! We continue to work on her Reading and Writing. Her grades are pretty good in these areas but have room for improvements. She has started bringing home chapter books from the Library for us to read. It is fun as a parent seeing her learn so many things at such a young age. Amazing!

Mia's the STAR

Mia has a role in her upcoming Christmas program. She is the Star! But we already knew that. She will get to wear a costume and sing a song - at least that is what she is telling us - hard to believe since she inherited her singing abilities from her dad. If you have heard him sing, you know exactly what I mean! :) We are so excited to see her program.

Mia is dancin' and tumblin'

Mia is taking both dance and gymnastics lessons this year. She did dancing for the first time last year and wasn't very excited until the costumes showed up for the recital. And she loved the recital! She is doing a very good job this year and has remember most of the dance steps from last year. The best part is when we get home from dance. She then tries to teach Mason all the moves and Mason loves it. Next thing I hear is both of them running through the house saying "Shuffle Step!" Randy's niece, Kaiti, is taking me to gymnastics after school once a week. She has been a great help to us since she is here in Wichita this year going to college. A few weeks ago I attended Parents Day and was surprised to see how much Mia had learned. It was crazy for me to see her tumbling and swinging on bars. She has come very far in just a short time.

Mia had a tooth pulled!

One of Mia's permanent teeth came in behind her baby tooth so the dentist had to pull the baby tooth. She was very worried about this all the way up to the appointment. I couldn't have asked for the appointment to have gone any better - the gas to get her to relax really did wonders! She was giggling the whole time. The doctor was great and Mia didn't feel a thing. She even said, "That was it?" Getting her flu shot was worse than this! Next year I think I am going to ask for some of that gas for the flu shot.

Well, that is about it for now. I wish I could honestly say that I will try to update more but I just don't see that happening. Life is good and busy!

Thanks for checking in on us and keeping our family in your thoughts and prayers.

Update from Kansas.....Is it really October?

Is it really October? I can't believe it's been almost 2 months since our last update! You will be happy to hear it's been an uneventful 2 months. Actually let me correct myself, it's been an uneventful month-and-a-half. The first week or two back home was a little crazy. Mason was having problems with hives and rashes while he was in the hospital. We figured it was stress and/or anxiety related and that once we got him home it would stop. It didn't stop so we spent the first two weeks at home in and out of the hospital and doctor's office trying to figure out what the problem was. We never did figure out what the problem was, but eventually the hives and rashes stopped. So maybe his body just needed a little more time to calm down. These kids really do go through a lot.

The one good thing that came out of all of that excitement is we discovered he didn't need his blood pressure medication anymore. One less med! He's still on a couple diuretics and Sildenafil, which is the big one. That drug is what got Mason through his last 2 surgeries. They initially took him off of it following this last surgery (Fontan) but after speaking with his surgeon, we all agreed we should put Mason back on it and slowly ween him down. So we are going to slowly ween him down or off of it over the next 9-12 months. Starting next month. So keep Mason in your thoughts and prayers as we go through this. We would really like to get Mason off of this drug without any setbacks or challenges.

That said Mason is doing great today. Don't confuse that with "he is a sweet little angel that never gets into trouble". Actually, it is quite the opposite. He is a typical, ornery little boy. Who thinks putting himself into time-out is all part of the game. He is also a blessing who reminds us each day miracles do happen and that the most important thing in life is to enjoy life. Again thanks for your thoughts and prayers along the way, Mason and many other children like him are proof the thoughts and prayers do work! Now I need to figure out what he did with my car keys!

We are home!

This will be a short post but we are home. Thank you University of Michigan! Thank you friends and family! Thank you Granny and Mamma for being there in Michigan and helping out with Mia and with the chores at the Ronald McDonald house. We couldn't have done it without you. We will use the next couple of days to settle back in at home, rest, eat decent food, and prepare for next week when life returns to 'normal'. Mason is doing well tonight and he has already positioned himself for a good nights sleep. He loves you all and he too says 'thank you'.

Heading Home

Kansas here we come. Mason was discharged this afternoon. We actually won't be leaving Ann Arbor until tomorrow morning, so we won't be home-home until Wednesday at the earliest. Mason is out of the hospital though and that is all that counts!

As always we appreciate all of the love, support, and prayers all of you have given us over the last 2 years. We wouldn't have been able to make it to this point without it. We are also blessed to have Mason. Who through 3 reconstructive heart surgeries, pulmonary hypertension, paralyzed diaphragm, a disease with no cure or prognosis, etc......continues to remind us each day that the most important thing in life is being happy. For today is the most important one off all. Fortunately for all of us Mason's happiness is contagious!

Now we head home and continue to love Mason each and every day and hope that he continues to grow and develop like a normal little boy. Again there is no cure for HLHS nor is there a prognosis. The University of Michigan however has given Mason a chance and that is all we could ask for.

Chest tube free!!!!!

Mason's last chest tube came out today, accidentally, but it is out. They were going to remove it tomorrow morning but little fingers played a role in getting it removed today. So..........He is scheduled for an xray tomorrow and a discharge echo on Monday. If all goes well he will be discharged on Monday. Let's hope that is the case! As mom and dad are getting tired of eating hospital food! Mason as always remains in great spirits. He's even turned into a little ladies man. Handing out hugs to the nurses like candy at Halloween. Who can blame him though, he's too darn cute and he knows the nurses won't say no.

One chest tube out and pink fingernails

One chest tube down, one to go. They pulled one of Mason's last two chest tubes yesterday. Ironically his draining has picked back up so it doesn't look like they will be pulling the other one anytime soon. Or at least not today or tomorrow. His O2 levels look great, however, which is awesome. That can be seen in his pink fingernails. Yes pink fingernails! One thing kids with Mason's condition have is lower O2 levels and with each surgery those levels get a little better and closer to normal. Right now he sitting in the 90 to 92% range. Never has he been that high before and it is good to see a 9 in that first number. Okay back to the wild man. He says bye.

Mason is so close to getting his chest tubes out, and the word "home" was even mentioned the other day, but after a very active day yesterday his draining actually picked back up. So we continue to sit and wait patiently. All the while Mason is turning into a wild man in his crib - especially after last night. He may actually pull the tubes out himself!

Mamma left this morning to go back to Kansas but Granny is flying in today to take her place and help out with Mia. Fortunately for her today is our day off at the Ronald McDonald House. So no chores for Granny today! : ) We hope everything is going well back home. Mason is watching Handy Manny in his crib as we type and talking up a storm. Hopefully the baby next to us is able to sleep through this!

Getting better

Mason continues to get better. At this point he is definitely back to being himself. Which includes melting down any time a doctor or nurse comes around. Needless to say his blood pressure is high anytime they try to take it so mom and dad have stepped in to help out. We are earning honorary nursing degrees as we go through this.

He loves getting out for walks and stroller rides. I think the hospital loves seeing him walk around too because he is so animated. The kid loves exit signs and will point each one out and say "exit sign". He also enjoys the automatic sliding glass doors next to the elevators. He gets so excited when they open up. He does what we like to call the happy feet dance. The walking also helps with his chest tube drainage, which continues to slow down. We are getting close to getting those tubes out. Fingers crossed!

Mason is continuing to get better and as you can see he is up and walking around. He would probably take off running if we let him. We are taking him out for a walk and/or stroller ride a couple times a day. Or as we call it "exit sign world tours" as the kid loves exit signs. His rash is getting better too but its still there and bothering him. All in all he is doing really well. It's great to be able to get him out and about. It helps with both his and our spirits. Now we just need his chest tubes to quit draining before we can go home. It's a waiting game at this point.
Thanks for the continued prayers and support. We feel the love in Ann Arbor.

Out of the ICU!

Mason is out of the ICU! He got his orders to move to the general floor this afternoon. His left lung continues to get stronger and as of this evening his nose is canula free. Hopefully it stays that way. The plan from here forward is to get him stronger and ultimately for the fluid draining from his chest tubes to come to a complete stop. We can't go home until that happens. Unfortunately each kid is different and the draining could last anywhere from days to weeks. They won't pull his chest tubes until he has stopped draining for 24 hours. We don't know if this means anything or not but he isn't draining as much as you would typically see at this point.

One other thing we haven't really discussed is that he has had a bad allergic reaction to something topical. Whether it be the tape they are using for his bandages or the ointments they are using, whatever it is his chest looks horrible. Tonight they put a burn shirt on him to keep him from itching it. Poor kid can't catch a break. He is talking more today and even though papa won't read this he keeps saying he is "papa's boy".

Busy Sunday

Another good night and another good xray this morning. All of this will be followed by what will be a very busy day. They plan to take him off all of his sedation meds today, start feeding him in his stomach (he took care of this himself as you can see above), start him back up on his blood pressure medication, start him back up on his Viagra, and ween him off of the hi flow machine as much as he allows. He is much more alert today and has said a few words. The first being "cheese" after mommy asked him if he was hungry. He is watching tv right as we post this. Let's hope the rest of the day goes as smoothly.

Saturday Update

So far today has been a better day over yesterday. Mason is much more comfortable and is waking up more. Unfortunately his left lung is down even more over yesterday but as long as he holds where he is at he won't need to be reintubated. The plan for today is rest, lots of chest poundings to loosen up junk in his lungs, bringing him down on pain/sedition meds, and removing some of the lines he does not need anymore. It may be baby steps but at least he is moving in the right direction.

Up and down day

Mason is still off the vent but he is needing more assistance than we would like when it comes to breathing. This afternoon they had to put him on a hi-flow machine to get his oxygen levels up. He continues to be on hi-flow as of this evening and will most likely be on it well into tomorrow. He is resting comfortably which is good because mom and dad are not. Hopefully he has another good night an even better tomorrow. We will keep you updated.

Good night and he is off the vent

Overall Mason had a good and more important uneventful night. So far we have been blessed to have great nurses in the ICU. They took him off the vent this morning and he is having some of the challenges we have seen in the past with his left lung not opening up as much as we would like. They are watching that closely and doing everything they can to keep him from going back on some type of breathing device. Hopefully his lung will get stronger the more he starts to come around. They didn't have much of a choice this morning in taking him off the vent, he was going to pull the tube out himself otherwise!

Post-op Blues

We finally made it back to see Mason. Even though this is the 3rd time we have seen him like this it never gets easier seeing him in this state. Overall he is doing okay, or so they try to convince us. His blood pressure is a little low and his pulse a little high right now. Hopefully those will normalize overnight. They are completely taking him off his Viagra and that has dad the most nervous. He was on such a large dose that we hope going cold turkey doesn't cause any issues but they are the experts. He will also be on the vent overnight. Fortunately Mason has no idea what is going on. Here's to a good night and an even better tomorrow.

We already miss Kansas.

Out of surgery!

Mason is out of surgery and his surgeon said everything looks great. His pressures are in check. It will be another hour before we get to see him.

Update #1

4 hours in and they haven't started surgery yet. His chest is open but the surgeon ordered another echo before he begins to get another reading on the narrowing in his aorta that the cath picked up yesterday. Correcting that was supposed to only add 15 minutes to the surgery but apparently it will add a couple hours. : ( As long as they get it right that is all that counts. Keep the prayers coming.

In Surgery

Mason is in surgery. It should take another 3-4 hours at this point. Unless something is worth noting we will update again when he is out. He was in a great mood when we handed him over. Of course they gave him some happy juice to take the edge off! Keep the prayers going.

Surgery is first thing Thursday morning

Mason's surgery is considered first case Thursday morning. We have to be at the hospital at 7:30, with his surgery beginning around 8:30. The surgery is expected to take 4-5 hours. So please keep Mason in your thoughts and prayers tomorrow morning! Making it past what is considered to be the final planned surgery of this entire process is a huge achievement for HLHS babies. So please keep Mason in your prayers.

Aside from the standard surgery they will be correcting a narrowing in his aorta that they discovered in this morning's cath. He also has an additional vein in or around the heart that they are going to check out as it has gotten bigger in the last 2 years. They don't know how it will react to this next surgery and they may have to obstruct it or something like that.

Mason was admitted to the hospital tonight but they gave us a pass so we could take him back to the Ronald McDonald house for the night. The bed is still at the hospital if we need it. He still has an IV line in so they don't have to poke him again in the morning. He is sound asleep right now from what happened today. He misses and loves you all. Again thanks for the continued support. It has meant a lot.

Surgery is a go!

Mason's pre-op cath went well and he is cleared to have surgery tomorrow. His pulmonary pressures were great. Thank you Viagra. We will provide another update later tonight. Now let's focus on a successful surgery tomorrow!

Pre-op Cath is Wednesday Morning

Sorry for the sudden stop in updates but we are having internet issues at the Ronald McDonald house. So we will do this one over the phone and yes it is painful! We checked into the RMH yesterday. They have done some renovations recently and it looks very nice. It's a wonderful resource for families of sick children, no doubt. Mason had his pre-op xray and echo today. There is no consultation following those. Wednesday morning is the big day as that is when Mason will have his cath. The results from his cath will let us know if the surgery is a go or a no-go at this point. Let's hope there are no issues and that Mason can have this much needed surgery. By all accounts he seems fine and his color looks good. So let's hope his pulmonary pressures are in check and we can all move forward. Even if moving forward is scary in and of itself. Again sorry for the late update but we will definetly update again tomorrow.

Change in Plans

So, the hospital called yesterday to confirm our appointments and said that Mason's xray and echo were on Tuesday not Monday. LET THE CRAZY BEGIN! This actually ended up being a blessing in disguise. It will allow us to stay an extra day in Grand Haven for vacation. We had also planned to spend the day with our dear friends, the Lentines',on Tuesday so that was not going to happen. After a few texts and a brief phone call, our friends have invited us to spend the night at their new house (they move this coming Sunday!). We are so blessed to have such great friends and I can't wait to see Mason's little girlfriend, Jillian, who is about 7 weeks past her Fontan surgery.

Back to vacation! First we went Holland to see the Windmill and buy some wooden shoes (will add pictures later - they are on the other camera). Mia and Mason (and Randy) got to ride on a Carousel. I think everyone had a good time but it was nap time. While Mason took a nap, Randy took Mia to the beach! And from the animated stories she told when she returned, I think she loved it. Randy also took plenty of pics and video for Mason and I to see. I would have loved to been there but Mason needs his rest before his big day. We plan to take him up there later tonight when it is not as hot. Wonder what he will think of the sand?

Mia enjoying the beach!

As many of you know, we have been really selective as to where we have taken Mason especially public places. And I think we have created a monster. He has no idea how to act in a resturant! All he wants to do is run around and find the exit signs. I don't know why but this kid loves Exit signs! Anyway, I feel so bad for the customers around us because he is so excited to walk around and be a wild man. He is very social when he does it and says hi to everyone but that is only cute the first few times. Randy and I have tried to tame the wild beast but we normally just throw in the white towel and give up. We basically just take turns walking round with him. It is that or hold him in my lap while he screams - I tried that and it wasn't pretty and the rest of the customers would not have been happy if I had continued.

Here is my little beast running around the resturant. I have briefly lured him over with a piece of bread - one of his favorites!

On the beach!

Okay first I want to correct myself from last night. Apparently Herbert Hoover was born in West Branch, Iowa. Not West Branch, Illinois. That goes to show you how much I was paying attention and/or how much I was in a trance from driving all day yesterday. Just use google for all of your Presidential facts from now on instead of Mason's website.

Anyway, we made it to Grand Haven, Michigan today. We got a hotel on Spring Lake right off of Lake Michigan and it's decent. We took the kids to the beach this evening, checking out one of the light houses while we were there. We then hit up an Italian restaurant before calling it a night. Surprisingly for how tired and out of it Amy and I were from driving all day, the beach recharged us. It was fun just to walk along the beach and take the view in. Mason was confined to his stroller so I don't know how much fun he had at the beach but he got plenty of running around time in at the restaurant. I know kids running around a restaurant can be annoying to others, but knowing what I know about Mason and his underlying condition, it's fun to watch him be a normal little boy!

Kids on the pier!

Lighthouse off of Grand Haven State Park

Mia posing in front of the "be careful walking on the pier sign"

Mason not wanting to pose for the camera!

Michigan Bound

We are off! We left for Michigan Tuesday evening stopping just north of Kansas City for the night. We traveled another 8 hours today and are staying the night in Ottawa, Illinois. Tomorrow we will be heading to Grand Haven, Michigan where we will be staying for a couple days before arriving in Ann Arbor on Sunday. We can't wait to get to Grand Haven so we can unwind for a couple days before the big week. Although seeing how the kids are still bouncing off the walls at 10 at night, unwinding may be a bit optimistic.

If I had to describe today's trip in one word it would be: presidential. On Mia's 5th or 6th restroom break we stopped in West Branch, Illinois which is apparently the birth place of former President Herbert Hoover. Who knew? Well outside of Herbert and his parents, who knew? They have a Presidential Library there along with his birth home. Anyway, we drove by the library quickly so we could say we've seen a Presidential Library. He is also buried there I believe. Then we pull into Ottawa and apparently it has some significant connections with Lincoln as his face is painted all over the place. I also saw a sign along the way saying "Ronald Reagan's Birthplace". Which has me wondering how many Presidents are connected to Illinois? That makes at least 4 for those of us that follow the news. ; )

Mason has been a handful so far. He won't sit still at all. Next week should be a lot of fun!

The Next Surgery

I've had several people ask me what this next surgery entails so I thought I would write a post on just that. Of course in terms we all can understand. Even for those of us who supposedly know what it is going on it's amazing how much we really don't know or understand. Of course if you ask Amy she will tell you she knows exactly what is going on, I go to her for clarification. To think I once set the curve in a pre-med class in college. ; )

This next and what is the final 'planned' surgery of Mason's journey is called the Fontan procedure. There is a little more to it than that but I will keep it at that. This next surgery will reroute the blood returning from the lower half of Mason's body through the heart so that it goes straight to the lungs for oxygen. Currently that blood is mixed with already oxygenated blood and gets pumped out to the body. Thus the reason Mason and HLHS babies like him have lower blood-oxygen levels during the first few years of life. Obviously the catch is this blood is being rerouted through one-half of the right side of his heart. As the left side of his heart does not work. This surgery will essentially complete 'asking' the right side of his heart to do everything including pumping blood out to the body which it was not designed to do. We can only hope and pray it can. We also need the pressures in Mason's arteries and lungs to be ideal before he can have this next surgery. So please keep him in your thoughts and prayers the morning of his pre-op cath. As that will tell us everything. Asking these little hearts to function in this manner is asking a lot. This is the reason they do this reconstruction in 3 different stages over the first few years of life.

Hope that helps................

Happy 4th of July!

We hope you are having a good 4th of July. The summer is passing by too quickly. With that comes Mason's next surgery, the Fontan procedure, which is scheduled for July 21st. That's right, Mason's next surgery is less than 3 weeks away! We are planning to leave for Ann Arbor next week! We are actually leaving a couple days early so we can stop along Lake Michigan for a couple days so the kids can have a 'normal' family vacation (expect updates!). This will be the 3rd summer in a row we have spent time in Ann Arbor. Hopefully the next time we return, it is only for a visit! I think all of us are looking forward to the mini-vacation, the surgery itself not so much.

As for Mason himself, he continues to amaze/impress/aggravate us. He's about as typical a little boy you can get. If you don't believe us, you should see the scotch tape all over our TV! Right now if there is something you have that you don't want thrown down the stairs, colored on, thrown in the trash, etc.......you keep it out of Mason's reach. Sometimes I step back and think to myself, how fortunate I am to be aggravated at my son. It's probably strange to read that but for those of us with heart babies, you know what I mean. These little kids are blessings in disguise.

With less than 3 weeks before Mason's next surgery expect more, frequent updates. We will be arriving in Ann Arbor on the 17th. Mason is schedule for a pre-op echo on the 18th. He has his pre-op cath on the 20th (pray for good news on this one). With his surgery being on the 21st as previously mentioned. Happy 4th!

Appointments This Week

Mason has been doing really good lately - at least that is what Mom and Dad think. He has an appointment with the Cardiologist in the morning (Tuesday) and the Neurologist on Friday. Hopefully, both doctors will be in agreement with us and say that Mason is progressing wonderfully! Please keep him in your thoughts and prayers that both of these appointments result in good news and that they are drama-free (not too much screaming!).

Mason definitely keeps us entertained and on our toes. He has figured out how to throw things away in the trash can. I thought this was a wonderful idea - he can help pick up after Mia and Randy. What I didn't think about was all the other things that he might think are cool to throw away. Randy saw him speed by him in the bedroom with something in his hand while chanting "Trash. Trash. Trash." A few second later Mason returned empty handed. It didn't take long to figure out that what he had done but the question was "what did he throw away"? MY SHIRT! Little stinker!

Mia is also doing really good. She only has a few more weeks of school. Her Kindergarten Graduation is on the 16th. I can't believe it!

One last thing, Mason's girlfriend, Jillian, is having her pre-Fontan heart cath in the morning at 10 am Central Time. Please keep her and her parents, Janel and Joe, in your thoughts and prayers. Jillian is scheduled to have for next heart surgery on May 23rd.

Mason's girlfriend, Jillian!

Mason and next surgery update!

You know it would have been nice of us to give you an overall Mason update last week when we told you about his birthday party, but waiting another week was worth it. As Mason's next surgery was scheduled just this past week. We'll get to that shortly........As for the Mason man himself, he is doing really well right now. He recovered quickly from his stroke last month and if you saw him today you wouldn't even know he had one. We are really blessed and thankful it wasn't any more serious than it was. We have to follow-up with a neurologist in another month but we don't expect anything to come out of that. The little guy is an eating machine now. Everything in his life revolves around food. It's funny to think that as little as 2 months ago he didn't eat or take anything by mouth at all. Now all he wants to do is eat. The first thing he wants to do each morning is eat. An hour later he wants to eat again. We were trying to keep track of his calories to make sure he was getting enough but we gave that up. He is doing just fine. He is a shorty but he is thick. He has forearms a mechanic would love. I'm afraid he is showing early signs of double-chin. We will happily take that diagnosis, however. He still loves TV and Mickey Mouse Club House. Honestly he probably watches too much TV but he loves it. He also likes Oso (I may be spelling that wrong) and Handy Manny. He even got Handy Manny's tool box for his birthday and he carries that all around the house. I comment that he is going to 'work' when he is toting it around. We actually caught him tonight sitting in front of the baby gate blocking off the stairs with his tool box. Like he was going to use it to break out. With Mason you never know........... From all of his TV watching he has started singing recently. Now the singing doesn't make much sense but it is so cute. If we can get it on tape we will upload it to his site (assuming we can figure that out!). I don't think singing professionally is in his future but he does sound better than his dad! As for Mason's next surgery, which will be the Fontan procedure, or the 3rd and final planned surgery in this 3 stage process, it is scheduled for July 20th. We actually expected it to be sooner than that but July will come quick enough. Amy and I share the same thoughts and emotions leading up to this next surgery, and that is we don't look forward to it. We know Mason needs it, and not having it is not an option, but now that he is 2 and by all accounts seems like a normal 2 year-old, putting him through another surgery is going to be challenging at best. This 'final' surgery will not cure Mason. He will still have HLHS. He may need other surgeries down the road, he may even need a heart transplant at some point, but these surgeries give him a chance to live with his condition and a chance is all we ask for. We realize how blessed and fortunate we are to have gotten this far. We also know it wouldn't have been possible without your prayers and support, the many doctors and nurses we've seen along the way, and the many HLHS babies who came before Mason. They are the true heroes in all of this.

HAPPY 2ND BIRTHDAY MASON!

Mason celebrated his 2nd trip around the Sun on Friday and today we celebrated by having a birthday party for him at his house. We had a great turn-out on what was an unusually warm April day. Mason was slow to warm up to all the adults being there, and he didn't like his birthday cupcake at all (instead he had birthday yogurt!), but overall it was a great time. Each birthday is another reminder of how blessed and lucky we are to have Mason, our friends and family, and the doctors and nurses who make this all possible. Thanks for the last year of support and prayers and we hope you enjoy some of the photos from today's party!

Pre-birthday party festivities. Note we won't be showing any after photos of our house.

As you can see Mason didn't like his birthday cupcake at all!

Mason enjoying his cup of birthday yogurt!

Mason relaxing in the new lounge chair he got from mom and dad. We're confident this chair will see plenty of 'seat' time.

Mason getting probably what was his favorite gift of the day: a box of crackers from his Mamma and Pappa!

There is no place like home!

Mason was released from the hospital on Thursday afternoon.

First, the cardiologist called to explain her conversation with U of M. Apparently, Mason's surgeon was out of the office so she spoke to the head of cardiac surgery about Mason's stroke. U of M wants to wait 6 weeks before doing a cath and agreed that going up on his aspirin was the right answer. Mason's surgeon should be calling us next week to discuss when we will be making our next trip to Michigan. Then the neurologist stopped by to assess Mason before we left. He thought that Mason still had some weakness in his legs and was not walking steadily. So, we will see him in a month to reassess. We also go orders to see his cardiologist in a month and pediatrician in a week. Whatever it takes to get out of the hospital!

I signed the papers and we were off! Once we got home and in his normal surroundings it was more obvious to me that he did have some stability issues when he walked. This has already gotten better in the last few days. I would say he is about 98%. REMARKABLE! Randy and I couldn't believe how happy Mason was to be home. He played and laughed like I have never seen before. It also seems that he is talking more, too. Randy and I have both noticed it. He is trying to talk in more sentences and I even heard him trying to sing the theme song to one of his favorite TV shows.

And if that wasn't exciting enough, Mia lost her first tooth Saturday morning! She is getting so big. She had been worried about this all week. Her and Daddy finally worked at it enough, it just popped out! We put it in a little plastic ziplock bag and started wondering what the tooth fairy would bring her. Then I started cleaning because the house had been neglected all week. Late afternoon Randy asked Mia where her tooth was - and she couldn't find it. We looked and looked - no luck. Then finally I thought about what had been on the table when I was cleaning. Could there have been a plastic bag on it that I might have thrown away? After digging through the trash, I located the little plastic bag with the very tiny tooth. Disaster avoided! Mia woke up Sunday morning excited that the tooth fairy had left her $2. She then informed me that bigger teeth are worth more - did you know that the tooth fairy will leave you $5 for a molar?

So, our house is getting back to normal. Mia's spring break is over. Mason is acting like nothing happened. Now, we start planning for Mason's big 2nd Birthday in less than 2 weeks!

Thank you all for your support and prayers through this last week and through the last 2 years!

Stroke

It has been confirmed that Mason had a stroke. The MRI showed damage in the back left side of his brain but the artery leading to it now is wide open. As soon as the diagnosis came in at 6:30 tonight, things started happening. Within minutes, they were there to give him an EKG and said that his cardiologist would be there in 15 minutes to do an echo to see if there were any other clots. His EKG and echo looked the same and she could not see any other clots. Now, an echo is not as good as a heart cath. She will be calling Mason's surgeon in Michigan in the morning to find out if they want to do a cath or add another med to thin his blood. If a cath needs to be done, we will be going to Michigan. We should know more in the morning. Those are the facts. How do a feel about this? I am pretty calm and in a good place. I actually wasn't at the hospital when the doctor gave the diagnosis to Randy. I was at home recharging for another long night at the hospital. While at home I got to thinking about what the worse possible outcome could be. I knew we could handle another med for seizures but kept thinking about the worst. I really believe that this is what had prepared me to handle the true outcome because I had already thought about what could be. Although I wish Mason would not have had the stroke, I do realize that we are very fortunate. Mason has regain most, if not all, of the function in his right arm. It is hard to tell today since he is still feeling the effects of the sedation drug. We should know better tomorrow. I am focusing all my energy on how do we make sure that this doesn't happen again. How do we protect our baby from this happening again? Because next time, it may not be the good of an outcome. We know Mason is going to need a pre-op cath for his next heart surgery so I say we go ahead and do it. This will give us a better idea if there are any other looming stroke risks and we would find out if he is ready for his next surgery. Unfortunately, I am not a doctor and won't be making this decision. Thank you all for keeping Mason in your thoughts and prayers. Please keep them coming. I truly believe I have a miracle baby. 25 years ago they had no way of treating his heart condition or his lung issues. The pediatrician that heard his heart murmur when no one else did gave him a chance to live. He coded 3 days after his first heart surgery and we were told that 1 out of 500 survive that type of complication. He has now had a stroke and has recovered only days later. MIRACLE?? I think so!

Quick Update

Mason has regained the use of his right arm. What the doctors think is that he had a seizure with Todd's paralysis (not sure if I spelled that right). This means that he had short term paralysis after a seizure. We spent most of the morning trying to get the Wichita sedation team to agree to sedate him for an EEG and MRI. They have finally agreed but it is too late today to do it. So, tentatively it will start at 11 am tomorrow. Mason has come around and is in better spirits - eating a little and even laughing a couple of times. He is still very tired which can either be from the seizure or the fact that they bugged him until 3:30 in the morning. Either way, he is returning to our Mason. Please pray that the results of the EEG and MRI are promising and this was a one time event. Mason does seem to be twitching or having muscle spasms randomly. Or maybe it is just my heightened sense of awarement. I just want to get the tests done so I can have piece of mind or at least a path. Please also pray that Mason is accepting of the doctors and nurses. The poor baby says "all done" when they come to see him. Hopefully, we will have a restful night - as much that can be had in a hospital - and be able to come home tomorrow.

Please pray for Mason

Mason had what we believe was a seizure tonight that left his right side paralyzed. He is being admitted to the hospital for observation. Mason had been running a fever and we had even seen the pediatrician late this afternoon. When he woke up from his nap, his right arm was twitching and then he refused to use it. We rushed him to the ER and after a moderately successful cat scan, we do not believe it is due to a bleed in his brain. All other test are encouraging. Right now it is pointing to the fever that he had. They will observe him overnight and we will see the neurologist in the morning.

One small step for man, one giant leap for Mason-kind!

Skipping ahead here but I thought I would share something very news worthy and exciting regarding Mason. The little guy has taken a giant step forward in the eating department. There was nothing gradual about it either. Mason went from having a complete oral aversion to 'eating' about 2 weeks ago and he hasn't stopped since. As a matter of fact he wants to eat everything in sight. Now I use the term 'eat' loosely, it's more like licking or lapping it up with is tongue. Which by the way, you should see his tongue. It's huge. Quite impressive really. Or very efficient I should say. Anyway, he is still learning how to eat so he uses his tongue instead and gnaws at things. Whatever works is fine with us. The fact that he is trying foods like he is, is a major development milestone for Mason. So far the only thing he has not liked is chocolate cake (sad day for dad). In the picture above he is eating (or licking) a bowl of re-fried beans, yes re-fried beans. I'm telling ya, there is nothing the kid won't eat.

MIA'S 6TH BIRTHDAY!!!!

As promised, this post is all about Mia and her 6th birthday party or I should say parties. I had to travel back to Missouri for some family stuff between Christmas and New Years and Mia went with me. Mia always does really good in the car for the over 4 hour drive - we have trained her well! She took a nap and then we stopped to buy her a new movie half-way through the trip to replace her favorite that broke and picked up some popcorn. Mia had her own little movie and a popcorn in the backseat! Granny asked if Mia could stay through the weekend so I returned to Wichita by myself. Mia had no idea what Granny had in store for her. What Mia thought was a visit to see her Great-Grandma and Grandpa, turned out to be a surprise party for her.

Here is Mia at her surprise party. She doesn't look excited at all, does she?

Daddy met Granny halfway and brought Mia home that Sunday. Mia had to leave some of her presents at Granny's because one in particular would only fit in Granny's Expedition (an almost 5 foot dollhouse - thank you Granny!) Mia returned to school for the week and we made cupcake shaped cookies to send to school on her birthday. They turned out pretty good and tasty if I do say so myself. Mason didn't want all the attention going to his sister so he created his own drama that day as well but that is the next post.

Mia also had her big birthday party at Pump It Up. This is a place that you can rent that has blown up bouncy toys - that is the best I can do to describe it. The pictures will do better. She invited her classmates and some of our friends. I think she had a good time!

In this picture you can see a few of the bouncy toys and Mia's friends having a good time.

So, this is not the first year we have had Mia's party at Pump It Up. Last year, Randy said that it was the best birthday party ever. It is fun for all ages! It was not surprising to see that Daddy and his friend join the group as well. It didn't get as rowdy as last year since there were only two of them! I think Randy would really like to have his party there, too!


By the way, today is Randy's birthday. Happy Birthday! No party at Pump It Up for him just a calm evening at home with a chocolate cake with store-bought frosting. It use to bother me that Randy preferred Betty Crocker over my frosting - I mean I learned it from my Grandma and even took 3 cake decorating classes. Okay, I'm still a little bitter. Moving on.


Mia hula hooping! Shake it, Birthday Girl!

After all the jumping around, the kids go to the party room where they get to have pizza and cupcakes and Mia gets to open her presents. She is the queen for the day!

This is a picture of all the kids that joined Mia at her birthday celebration!

I can't believe my baby girl is six! Where does the time go? She is growing up so fast and is getting so smart. It amazes me everyday how much she learns at school. She is reading books, adding numbers, counting money and telling time! Amazing!

We are so proud of you, Mia! We love you!

Mommy, Daddy and Mason

Busy, busy, busy

December and January are always busy months at our house. I have been trying to think about how I would write my next post. I envisioned this huge post of all the things that have happened since my last post and it slowly became clear to me that my brain was not that big. So, I am going to try to write a few posts over the next few days to get you all caught up. So, this post will be about . . . . .

CHRISTMAS

I think this had to be the best Christmas at our house so far! Apparently, I had been a very good girl this last year. But I won't bore you with stories about me at Christmas because I know you all want to hear about the kids, right? Well, I believe they had a great time too. Mia was a little concerned that she hadn't been good enough until Christmas morning and she decided that she must have been worrying for no reason. We did stay in Wichita this year and although I missed my family in Missouri, it was nice not to have to travel. Randy, Mia and Mason went to Newton Christmas Eve Day (I wasn't feeling well - I think I was still recovering from all the traveling at Thanksgiving! It is not as easy as it use to be now that we have to take all Mason's feeding supplies and medications.) They had a great time! We did go to Randy's parents on Christmas day and had a great meal. Thank you, Mamma!

Christmas morning, Mason was the first to get up which surprised me because I expected Mia to wake us up in the wee hours of the morning. We woke Mia up and the festivities began. Mia was ecstatic at all the presents and Mason just seemed overwhelmed. Stockings first!

Mia is still half asleep but happy none the less. Mason is watching Mickey Mouse and has no clue what is going on!
Ahh, we are finally awake now!

What did Santa bring in those stockings? Candy and . . .

and toothbrushes! That Santa is so smart!

One of Mason's favorite presents from Santa - after he got warmed up!

Mia's favorite presents - Justin Bieber dolls!

Next Post - Mia's Sixth Birthday!