It is time...

"Dad, we're going to Boston!" Maddox said excitedly as Jeff walked through the door a few weeks ago.  Maddox has said, almost daily since we mentioned it, that he wants to go to Boston. And each time I tell him it won't be for a little while he responds, "Maybe tomorrow."

I will feel badly when his expectations of a fun trip to Boston don't quite 

match the reality. 

If only it was for fun.

Maddox will be having open heart surgery July 22nd, to be preformed by Dr. Pedro del Nido at Children's Hospital Boston.   We are grateful to have Dr. del Nido as his surgeon again and know that Maddox will be in good hands.  Maddox needs his homograft(cadaver valve being used for his pulmonary valve) replaced and his mitral valve worked on, hopefully just repaired as opposed to replaced at this point.  Maddox had a Cath here in St. Louis in April which showed that it was indeed time to head to the OR for open heart surgery.  Valves are narrowing and pressures are increasing and after a good long run of 3.5 years since needing any intervention for his heart, the time has officially come.  We will fly to Boston on the 17th, have appointments on the 18th, heart Cath on the 19th, and then open heart surgery the 22nd.  It will be a challenging time, especially for Maddox.  

Maddox is in a good place right now health wise and we are feeling hopeful that this will mean he'll  handle things well and recover from surgery in record time.  We started him on a new, real-food formula a few months ago, thanks to insurance finally listening to the plea of doctors and therapists and covering it, and it has made a difference.  He is now in the 7th percentile for weight and although he's still in the 1st percentile for height he is growing.  Still, he is tired and the days where he needs 4-6 hour naps are becoming more and more common. When he is feeling good he is going, going, going, but his strength and endurance is certainly not that
 of your average almost-4-year-old.  His primary(church) teacher said that he will often lay down on the floor or lean against her during sharing time/class time and sleep.  The world just goes on around him and he hardly budges. I will admit to not breathing the typical sigh of relief when you finally get your kiddo down for a nap. Instead I miss him. And I worry about what is going on in his sweet little body.

We are on our way to Utah for a little family vacation before Jeff, Maddox and I hop on a plane to Boston.  We will drop off Keyan, Brynna, Tracen, and Grey with sweet and generous family members and then leave for about a month.  Jeff will fly back to Utah to bring the kids back in time to start school in August.  Hopefully Maddox and I will be home by then.  Between Jeff, Maddox and I, we will need around 12 one-way-tickets this summer for all the bouncing 

around we'll be doing.  

Some of us are feeling a little anxious about everyone being separated. One of our older kids has been waking up in the middle of the night to check on Maddox and Grey in a panic.  Even during the day this child will anxiously search the house for the little boys if they are not in sight.  It is sweet and endearing but I know there is stress and worry about things coming up at the heart of it.  I feel it too.  Will Maddox have a smooth recovery? Will he be better off after the surgery? When will we all be back together again?  Will Grey feel abandoned? How will he adjust? Do the kids have everything they need to start school? What if one of the kids gets sick or hurt and I'm not there?   

etc...

But, I can't waste my time and energy worrying about things that haven't happened yet or about things I have no control of.  We have tried to prepare and are doing the best we can given the circumstances. We are praying hard that things will work out, and they usually do. 

The Lord has blessed us tremendously and all we can do is have faith that we'll make it through.  

pictures from the past 6 months or so:

watching the snow

The Past Eight Months in Pictures

It is sad that it has been more than eight months since I updated this blog.

We are still trying to find our rhythm after moving and having a new baby this year.

Maddox continues to make steps forward and backward in the crazy dance that is his life.

One thing is for sure.  This kid has a personality.

I am trying to recognize the little, sweet moments with him -and each of my kids- and take note.

There have been quite a few little ones in the heart community who have finished their earthly missions in the past few months.  

My heart has broken each time I read about the struggles and grief of the many families who

are part of this special group.

They inspire me to not miss the little moments of life.

I look at Maddox and my heart is full.

Catch Up

It's been a busy few months since we last posted, but there have been good things going on with our little Mad Man!

Maddox and I traveled to Boston in October, a week before his second birthday, for his first follow-up visit since we left when he was two months old. We had two full days of traveling to and from and two full days of appointments at the children's hospital. It was a whirlwind trip, especially since I was 11 weeks along with our fifth baby. But it was a trip full of good news and good information. We were anticipating the news that Maddox would be needing open heart surgery this year, but after having a sedated echo, Mad's cardiologist, Dr. Tworetzky, was thrilled with how his heart looked. Obviously it is not a normal heart, but all leakage is in the mild range and could potentially last for quite a while as it is. His homograft will need replaced at some point, and his mitral valve will need repaired/replaced eventually, but nothing needs done right now. This is a tremendous blessing, especially since we were trying to plan how to have surgery around having a new baby. I was feeling stressed about the possibility of spending months in Boston with Maddox and delivering our next baby there while Maddox recovered from surgery. It was not an ideal prospect, but I'm sure we would have survived if that was what was necessary. Thankfully, it doesn't appear to be what will happen and we are thrilled.

Also while in Boston we met with a GI doctor, a dietitian, and spent three hours doing tests to see where Maddox is developmentally. We didn't get any new information from GI or the dietitian and are just keeping with our current feeding program:carnation instant breakfast, whole milk, 1100-1200 calories per day through the g-tube. The news from the neuro-developmental screening came back positive overall and showed that Maddox is in the average range for everything but gross motor. They recommended we get him back into physical therapy(he'd been discharged over the summer). He is definitely making progress and catching up developmentally, but has areas we are working on. Mostly right now we just let him play and run around like a normal kid. He loves being outside, reading stories, playing with cars, trains, spider man, iron man, balls, wrestling, watching movies, singing, coloring/drawing, making messes, taking baths, climbing stools, stairs, ladders, etc... He is your average crazy two year old. (By the way, we took ZERO pictures of his birthday. There was no cake, no candle to blow out, and one measly little gift. I did hang a birthday banner because the older kids were appalled at our lack of celebrating. How's that for being a great mom. Sorry Maddox. Hopefully I'll redeem myself when you turn three).

Maddox admiring his "precious" as we wait outside the temple after

Aunt Ashlie and Uncle Cade's wedding.

We started growth hormones in November and obviously Maddox is less than thrilled about getting a shot every day. Jeff and I are getting used to giving them and alternate days between holding and sticking. We rotate around Maddox body so that he receives the shot in a different spot every day. Right now we use his bum and his thighs. He is constantly bruised, but hopefully it will be worth it and help him grow. We should know if it's working after six months of use.

Christmas spider man pajamas--the kid is obsessed

Maddox is too old this winter for insurance to cover the synagis shots that protect against RSV and so we are trying really hard to be careful and avoid crowds, especially in enclosed places like church. He has had a cold for months off and on, but so far nothing major yet(knock on wood). I have heard horror stories about kids ending up in the hospital multiple times the first winter they don't get the shots and I would much rather avoid that if possible. Hand sanitizer and avoiding people is our best bet. I am hopeful that there will come a time when we can be less reclusive during the winter, but at this point it's not worth it.

we made special allowances and took Maddox to church for one hour on Christmas

so we could go as a whole family as opposed to our usual one-parent-on-one parent-off approach.

Maddox is still trying to decide how he feels about eating. His reluctance doesn't really make a whole lot of sense, but I am sure that at some point he'll figure it out. He asks for water all day long and will drink it by the cupful. He asks for chips, crackers, croutons, m&m's, a bite of this and that, apples, carrots, cookies, milk, etc... He'll suck on whatever it is, chew it, hold it in his mouth for several minutes and then spit it out. Very little but fluids make it all the way down. He'll climb up a step stool in the pantry and dig a chip out of a bag, but he doesn't do much more than carry it around. So, we just continue to work with his OT on sensory and feeding therapy and try not to stress about it. I would love for the g-tube to be gone by the time he goes to school, but hopefully by then he'll at least be capable of pushing a syringe of milk into his stomach at lunch time if he can't eat a peanut butter and jelly sandwich. He could be the talk of the cafeteria!!

...kind of a funny story about the g-tube...on Halloween Mad stayed home with me to hand out candy to all the little trick-or-treat-ers while Jeff took the older kids out to beg for candy. Maddox has a bad habit 0f lifting his shirt up all the time as he walks around the house and even out in public -not a big deal, but gets some funny looks. Well, we had a group of about 6 cute little girls come to the door and while I was handing out candy they were all oohing and aahing over Maddox, saying how cute he was. And then suddenly, we had our own little house of horror as Maddox lifted his shirt and exposed scars and a foreign apparatus hanging out of the side of his stomach. The girls' smiles vanished and with looks of terror they turned and bolted to the safety of their parents waiting on the sidewalk. I chuckled for a while and Maddox, completely unaware of his charm went about his business until the next unsuspecting trick-or-treat-ers came to the door. Good times!! We forget how abnormal our normal is to most people and sometimes we just have to laugh!

Maddox as Charlie Chaplin for Halloween!

The hat is a bowl that he wears on his head all the time. That gave us the idea, so we painted the hat black

and put him in a suit and gave him a mustache--cutest Charlie impersonator ever!!

-taken at night with a phone so it's grainy-

Well, that's what Maddox has been up to.

We are excited to start a new year and are hopeful that things will continue to get better and better for him. He is such a blessing. He is going to be such a special big brother.

He has already taught our family so much and is such a joy to have around. He just lights up a room with his smile and enormous personality. He is so full of life and we marvel every day that he is here and a living part of our family.

We sure love our little Miracle Maddox!

22.75 months

The big news of the month is that Mad gained 1lb 4oz, and 5/8 inches

in the past 30 days!!!!

This is huge for him, and ironically enough he did it without the growth hormones that we have been waiting all month to get. I don't think he has ever gained so much so quickly, at least not in the past year. We recently started whole milk and carnation instant breakfast for his food and have gone up from 900 cal/day to 1100 cal/day. Apparently it is working. Our theory that the vomiting and retching is mostly in his head and due to his sensory issues seems to be correct, as changing him over from formula with all the proteins broken down to normal cow's milk, has not caused any increase or change in the throwing up. It has also made Jeff and I feel like we have won the lottery -the current food being SO MUCH CHEAPER!!

Maddox has gotten over his fear of grass, and can now be found running around outside with the big kids. He is always on the go and is always saying, "GO!! GO!!" He loves getting in the car to go somewhere or just making a run for it every time the front door is opened. He goes to bed late, wakes up early and aside from the two hour nap he usually takes (on the floor wherever he drops) he is going, going, going. Yes, he won't nap in his bed anymore so we've gotten in the bad habit of just letting him go to sleep wherever his narcoleptic tendency kicks in. Seriously this kid is out in half a second, mid-conversation with you. It is kind of funny. He has fallen asleep on the tile floor many a time, but he typically sleeps on the floor in the family room regardless of the noise and children hopping over him. Crazy kid.

Maddox is really into Spider Man right now and walks around trying to sing the theme song. He asks for his spider man toy by name and is thrilled when he finds the Spider Man coloring book, or pieces to the super hero memory game. He's a big fan of the man who "does whatever a spider can." He also loves Sheriff Woody. We have two, and he is sure to tell anyone who tries to play with one whose it is. "MINE!" The kid is not very good at sharing...yet. He loves cars and balls and legos, though he is always pulling off the lego men's heads. Typical boy.

We had a cardiology appointment yesterday and Maddox was very pleasant. It was a new experience. He was still and quiet through is echo(he was watching a movie) and let Dr. Allender and Nurse Melynda hold him and even gave Dr. Allender a kiss on the cheek. We learned that heart surgery is a definite in the next year. We knew it was coming, but it definitely gave me a reality check. I want to be optimistic and say that Mad will fly through this next surgery like a champ and we'll be home in two weeks and return to our happy normal lives. This is definitely possible, but I've seen too much to think that it is the norm. I am nervous and honestly broken- hearted when I think about being separated from the kids and Jeff for any length of time. I honestly think that first year has scarred me in ways that I don't care to admit and I worry about going through it again and stressing about the ways it affects the other kids. Oh well. It's not something I have much control over, so I guess we'll worry about it as it gets closer.

Maddox and I are heading to Boston in October for a few days for some follow-up appointments, which is great timing given our current timeline for surgery. I am excited to get their view of things and to have his doctors there see him. We are going right before his 2nd birthday so that we only have to pay for one ticket. Somehow it always seems to come down to money. You'd think we'd be over that by now. haha! Maddox and I will be riding the subway and walking and pretending to fit in in Boston. I'm excited to be in the northeast for such a beautiful time of year, especially after the intense summer we have had in Texas this year. Maddox and I will likely freeze, but maybe I'll just have to go shopping to make sure we are outfitted for the nice cool weather!

Maddox is a joy to have in our family. I tease that he is a punk and he is, but he HAS to be feisty and determined to survive, so I can't blame him. He has such a fun and happy personality and deals with the less pleasant things very well. I admire this little man and his fighting yet loving spirit. He is a wonderful example to our family and I couldn't be more proud of him.

Oh, the joys...

...A day in the life of Maddox's mother.



...sitting at Tracen's karate class, Mad's g-button gets pulled out, delightful smelling stomach contents leak all over himself and the floor, random people look on in horror, I try to stanch the flow of juices streaming from the stoma in my baby's gut, realize we don't have what we need to get the g-button back in, open the door in the glass wall through which we watch Tracen, and tell him we have to leave right now - it's the middle of the class and we were late to begin with - try to wipe up the curdled milk all over the floor before racing out the door and down the elevator to the car so we can drive home to shove a piece of life-saving plastic back into my baby's little body.



It's such fun to leave shocked people behind wherever we go. I just hope they aren't cursing my name for the stench of vomit we left behind. I guess I'll find out when I see all those mothers next week at karate class.


- Posted using BlogPress from my iPhone

Months 20 and 21

The months are all running together around here and so once again I have skipped one. We were on a two week vacation to California and Utah when Maddox turned 20 months, and have been dealing with illness of one kind or another since returning home, darn it. Isn't it summer? Some of us came home sick from our trip and then that illness morphed into walking pneumonia. Maddox narrowly escaped a trip to the hospital and is now, after almost a month, still coughing and wheezing very occasionally, but overall doing much better. Keyan, Tracen and I are now on antibiotics to restore us to health. It's been a LONG month.

Maddox did well for the two weeks of our trip, five days and 3700 miles of which were spent in the car. He was still riding in his infant car seat because the kid is not growing and still weighs 19 lbs, which led to him being pretty uncomfortable for a good portion of the trip. Thankfully he only complained loudly upon occasion. We went to visit our friends the Wunderlis and the O'Verys and have our "Wundovixon" vacation in Southern California. We had a great time and Maddox enjoyed interacting with lots of kids and walking everywhere. He wasn't a big fan of the beach, or the splash park, but loved exploring everything at the children's museum. It was so fun to watch his little curious self.

Then we drove to Utah to visit Grandma and Grandpa Dixon, Aunts, Uncles, and cousins. We had a wonderful time. Grandma bought all the kids squirt guns and Maddox made shooting sounds when he aimed and then would fall dramatically to the side and moan as if he'd been hit. HILARIOUS!! We also went to the zoo, had a fun day at the park with lots of extended family, played games, ate good food, and had a great time. Maddox practiced going up and down a short flight of stairs at Grandma's house and continued to perfect his walking.
(Sorry about the pics, the collage program was cutting parts of pictures off, which is why some of my favorite family members are missing from the big Dixon group shot below. Sorry Beth and Ada. Love you.)

Maddox is now in the adorable habit of kissing everyone. We LOVE it!!! He'll kiss whatever body part is closest. Sometimes I'm not quick enough to keep him from kissing our dirty, sweaty feet. Unfortunately he doesn't seem to mind. It is seriously one of my favorite things to see him pucker those little lips of his. He can really be so charming. He is cuddly and affectionate, tries to make us laugh, and is happy even when he's sick. He coughs and retches until he's purple in the face and gasping, and then with his next breath he says, "hi" and smiles and then gives a kiss. It amazes me every time. And yet the kid can pout like anything. He sticks that bottom lip out, droops his shoulders and will hang his head back, looking up at the ceiling or look down, depending on the day, and walk slowly and dejectedly away if he doesn't get what he wants. And watch out if you make him really mad, he will let you have it. He will glare, then start swinging. He hits and throws things and yells. It is hysterical because he's so little, but maybe a little frightening to see how intense he is already. He cracks me up. He gets his feelings hurt when he gets in trouble and sometimes I am surprised at how mature his reactions are to certain things. It gives me comfort though to see everything that is going on in his mind and that he has appropriate responses and understands a lot of social cues.

Mad is mimicking us more and more. He is communicating with words and through any other means he can. He signs a couple of words, points, gestures, and generally gets his point across rather well. He loves to play with cars, balls, and star wars action figures. He definitely fits in with the boys. He loves to wrestle and chase and be chased. He loves music and has started singing to himself. He also LOVES to dance!! It is too cute. He has great rhythm and claps, bounces, spins, sways...the kids just loves to move to the music. We have quite a few dance parties at our house with all the kids and they all love it. Great memories.

Maddox has a quite the little sense of humor and really enjoys making us laugh. He plays the class clown and just loves to ham it up for us. He has also starting laughing at his own flatulence, so yes, the potty humor is already alive and well.

Maddox has completed his physical therapy and is essentially caught up with his gross motor skills, or enough so that he no longer qualifies for therapy. We are thrilled to have reached this amazing milestone!! Quite the accomplishment for our determined little man.

He still qualifies for the occupational therapy due to his feeding issues. Maddox still loves to drink water out of any cup, straw, water bottle, and also likes root beer, which we have for pizza and movie nights, but other than that he continues to pretend to eat. He plays with forks and spoons and puts them into his mouth, but only without food on them. He will pick up little crumbs of food -crackers and such- off the floor and nibble and even swallow minuscule pieces sometimes, but nothing to help with caloric intake. We have stopped our attempts to wean him from the tube in an effort to just get him to grow. In order to start the growth hormones he has to have sufficient calories for growth. Right now he is getting 900 calories a day through his g-button. He has grown a tiny bit length wise, but has been 19 pounds for NINE MONTHS!! Pretty discouraging. He's the size of your average 9 month old. So, we have even had to start a drip(continuous pump) for part of the night to be able to get all the calories into him. It's been difficult, especially with him being so ill and coughing so hard, to keep him from throwing his feeds back up during the day. He handles it just fine when he is asleep, but going back to a nighttime drip is a big step backwards. Any sort of growth would make it completely worthwhile, so we will do it until he can handle it all during the day again.

The paper work for the growth hormones has been completed and we are waiting to hear if our insurance will cover it. Mad's endocrinologist said we will do a 6 month trial with the growth hormones, and if we don't see much improvement then we're done. I want him to have as normal a life as possible, so I'm praying that the shots do what they are intended to do.

Things have been stable from a cardiac stand point. We go back to the cardiologist again in September. We are on an every three months schedule still, which I like. Too much time between check-ups makes me nervous. Maddox is getting slightly better about going to the doctor, which means he isn't screaming the whole time anymore, and has even smiled and waved goodbye to the doctor. Baby steps. I'll take it.

Well, that's Mad. He's trouble with a capital "T" sometimes, but everyday I'm so happy he's here. He is such a love and he's mine!!

19 Months

Maddox is ...

WALKING!!!!!

Well, maybe "taking steps" is more accurate, but either way we are beyond excited!!

It is adorable to see his tiny little legs and tiny feet toddle around.

Maddox is doing very well and we are so grateful.

He is making good progress with feeding and we have started to ween him from the g-tube. He is tolerating more food in his mouth and isn't gagging on it, though he usually just moves it around his mouth for a little while and then spits it out.

At least that is what he does with anything solid. He is much better with liquids. Water is his favorite, but unfortunately doesn't really boast many calories. He enjoys spending time in his high chair playing and tasting and making messes. It is so fun to see him doing such "normal" stuff. I love it!! He still weighs 19 lbs and hasn't grown much in length, but he is getting good calories from the g-tube, and catching up developmentally.

His personality is so fun! He really likes to make people laugh, snuggle, tickle, and just play.

We are enjoying this phase with him so much. He is still the most determined and stubborn little guy, but so endearing and just makes us so happy. He is curious and into EVERYTHING! His mind is definitely working. I just love watching him figure things out.

He communicates using various means, but is putting more and more sounds together and mimicking us more as well. When you don't use your mouth to eat, learning to use it to speak is a challenge. There is an incredible amount of coordination and muscle used to move your tongue and lips and eating really works those. It is understandable for him to take a while to figure out how to talk, but we are encouraged by all that he is doing. He is still extremely attached to his pacifier and likes to go to bed with two. I have watched him hold one in each hand, put one in his mouth for a few sucks and then switch, all in his sleep. He is a little obsessed but it works the muscles in his mouth and provides a great amount of comfort to him so the binky is staying. We'll deal with the orthodontic ramifications a little later.

Maddox went to the pool for the first time this week, and I think he liked it. He was reserved in his praise, but I know that if he hadn't liked it he would have made it known. We rarely went to the pool all together last summer due to Maddox being much more fragile and on oxygen so much. This summer will be different. The kids are all excited.

Maddox has been coming to church with us for the past several weeks. He is your typical one year old who doesn't want to sit still, which means either Jeff or I spend a little time out in the hall. We aren't putting him in nursery(class for 18mo-3yrs) because we just don't want him sucking on the toys all the other runny-nosed kids are sucking on. I think we'll pass on the guaranteed germs. Who knows when or if we'll put him in, but at this point we are just happy to all be at church together.

Maddox is just our little love!! We are so grateful for him and so happy that we've all made it this far. We are in a great place with him right now. I feel so blessed to be his mother and to have had some of the experiences that we have had. It is amazing to make it through a really difficult time and then look back at the road you've traveled. I finally feel like the future is bright and the "trial" in many ways is over. We know there will be lots of rough patches and painful experiences, but we have managed to live through something we never thought we could survive. I am so thankful for friends, family, and especially a loving Heavenly Father who through His Son, Jesus Christ, helped us carry this burden and learn and grow through the process. Our lives definitely took a trip to a destination different than the one we had planned, but I can't tell you how grateful I am for the amazing husband and kiddos I'm traveling with.

Life is good.