Ten Months, Swallow Study, and Surgeon Visit

Wow! I cannot believe Cannon turned 10 months today. It depends on what part of the past 10 months I am thinking about at the moment as to whether it seems like it went by fast or slow. It's been quite a roller coaster ride since Cannon decided to make his appearance but I can't imagine where our lives would be without this little boy.
Yesterday we made another trip to ACH. Cannon's surgeon wanted him to have a swallow study so we could see how his esophagus was looking. It still looked exactly the same as the very first one that he had seven days after his repair surgery. This is fantastic news. There is only the slightest narrowing at the surgery site that you really have to look for. His surgeon did a beautiful job repairing him. We could not be more appreciative. We are all so pleased with this and still have hopes that he will never have any narrowing and possibly never need a dilation. His tummy is still healing from his g tube site getting closed up on dec 19, 2011. A couple of weeks ago I discovered there was still a stitch just below the surface of his skin that had not dissolved and was keeping the site red and irritated. Dr. Maxson looked at it yesterday and said it should dissolve but when the scab comes off after his baths to put a little peroxide on it to help dissolve it. So not a big deal there. He also said that we have no follow up appointments with him for 2 years and will only see us when we call to come get something removed from his esophagus (I.e. Food, or whatever else a toddler can think of to put in his mouth) as children with EA/TEF tend to get things stuck quite a bit. I've read that some parents have had to take their kids in to get a couple pennies removed or a sticker. So we will see what it'll be with Cannon someday.
After his appointments we took him downtown to see my sister at work. She works at the Old State House Museum. It's so neat there. She had a blast getting to see Cannon and he went on his very first tour (although a quick tour) of the museum. He took it all in! My brother works right across the street from her and was able to walk over for a little bit to see us. And we also had a little photo shoot outside the museum and by Lady Baxter (the old cannon outside the museum). We have decided we will have Cannon take pictures by the cannon each time we can go see Brooke at work. Should be some fun pictures to see and take over the years. Haha!
Just as a side note....I'm writing this blog from my phone and it seems to be showing the pictures I'm adding in a different order than what I chose them in. Not sure why and not sure how to correct it. Oh well. Some are from the visit to Brooke at the museum and the others are just ones I like. And yes the sign says please do not sit on cannon. Haha! Brooke sent me a picture of this sign while Cannon was still in the NICU. I wanted to get a print out of it and tape it to his isolette as a joke but never got around to it. I guess instead we will just have to take his picture next to the sign as he grows up! Haha!
Until next time...
Love,
Christian, Trent, and Cannon

Goodbye 2011....Hello 2012!

Today is the last day of 2011! YAY! Maybe our 2012 won’t be quite as stressful as our 2011 year. A little recap of this year. In January, we lost my grandmother (my dad’s mom) on the same day that my dachshund hurt her back and we had to take her to the vet. In March, our son arrived 2.5 months early, very small, and needing a major surgery. He spent 86 days in the NICU at ACH and then came home for 3 weeks and got a little more sick and had to spend another 12 days in ACH. We have learned a “new normal” in our life. Things got a little easier and a little less stressful. The end of September Cannon’s g tube came out of his tummy. In December because the hole had not quite healed up the way it should have he had surgery to close it and another small surgery at the same time. And some firsts….Halloween, Thanksgiving, and Christmas! A death, a hurt dog, a birth, and 4 surgeries later I’d say our family is ready for a New Year and hopefully a GREAT one at that!

I meant to update after Thanksgiving, but then several days went by…Then a few weeks… So I decided to wait until after Christmas……So now here I am on the last day of the year. Nothing like procrastination! Maybe this won’t be too long of a blog.

Trent was off work for Thanksgiving and we decided to spend it in Stuttgart as we do most years. Though this year we actually got together and cooked a big meal. Normally we are just back and forth to aunts and cousins houses while we are there but no big meals together. We had a blast doing this and I kind of hope we do it again next year! (Hint hint Sarah!!!!) It was the first time Cannon and Kennedy had met each other and that was so fun to see those two cousins interact. They loved each other so much! Kennedy calls Cannon “her son”. I guess for now we will let her. She’s so sweet and so good with him. There was only one moment where we saw a very jealous look on her face, but for 5 years she’s been the center of attention. She constantly tells me what a cute baby I have and kisses him on the head and sings to him. It’s adorable!

We spent the weekend before Christmas in Stuttgart again. This was the first time in several years that Trent was off work and able to go with me. My sister had told me that she and Kennedy would not be able to come this year. However, they were there to surprise us when we arrived! I was so excited! The only downfall was that since Sister had told me they wouldn’t be there I had not brought Kennedy’s presents. Imagine me trying to explain to a 5 year old why I didn’t have a present for her to open! Of course I also told her I would put it in the mail the following Monday, and I still haven’t done that! Sorry Kennedy! Cannon had a blast during this Christmas celebration and ate a TON of mashed potatoes and gravy (yep…he got that from me!). He ripped open presents and played so hard!

My sister and my niece Kennedy

Trent and Cannon

My sister and me

Cannon and Trent

Cannon, Trent, and Aunt Dirt!

Cannon!

My hot natured child (yeah we had to take his shirt off!) and his Aunt Dirt!

Me and my little boy!

We had Christmas at Trent’s parent’s with his family on Christmas Eve as we always do. We had a great time and enjoyed being with all of the kids and family there. There was lots of food, noisy kids, paper tearing, picture taking, and finally Cannon crashed before we could leave! We got home and put him to bed and then the next morning when he woke up…….SANTA HAD COME TO SEE CANNON!! Woohoo!!  I failed to get any good pictures at Trent's family's Christmas.  These were the only two decent ones.  Sorry to all the McCone's.  There is a really cute picture of Cannon and his Aunt Melissa when we first arrived and he was wearing his 'coon skin hat she picked out for him last year, but it's on my phone.  Would you believe that of all the space I had on my laptop I have run out of room and cannot put anymore pictures on my laptop until I clean it up.  Haha!  So these will have to do for now!

Cannon and Trent's parent's on Christmas Eve.

Uncle Alan and Aunt Melissa

We did Santa present opening with Cannon when we got up (all of those pictures are on my phone and I can't put them on my laptop right now!  Sorry!). I had to wake him up at 8:45 because I was so excited and couldn’t stand to wait any longer to bring him in the living room to see what Santa had left him! He had a blast opening presents and playing! Then later that afternoon we did snacky foods with my dad’s side of the family. It’s always an interesting time with a whole group of Malloy attitudes in the house and once again it was interesting and fun as always!

Aunt Brooke wanted some snuggle time, so she got it!

Cannon had to help Uncle Carter open his presents!

Aunt Jenny, Uncle Carter, Cannon, Trent, Me, "Big" Grandaddy (my Grandaddy), and Aunt Brooke!

Tonight is New Year’s Eve. Trent is working until 10pm. Cannon and I are here at the house hanging out, fixing bottles, changing diapers, and maybe I will let him have a little apple juice!

Cannon’s Milestones: He can sit up without toppling. We can stand him up by the chair in his room and he can hold on and stand there for a couple of minutes. Dec. 13 he cut his first tooth. Dec. 31 (today!) he cut his second tooth! He CAN roll over in both directions but he could really care less to do it! He can sit up on all 4’s if we put him like that but he will not crawl! He is working on using a sippy cup, although he wants us to hold the cup if he wants a drink. He has zero desire to drink from the sippy cup and hold it himself. Kind of like he has no desire to hold his bottle on his own to drink….he wants us to do it! He still loves to jump in his jumperoo! He loves to hear his daddy call ducks on the duck call. He thinks that is the most hilarious thing ever. He laughs so hard at it!

We wish everyone a Happy New Year!  And may everyone have a very blessed 2012!

Love,
Christian, Trent, and Cannon McCone

First Halloween, Meeting Family, and Dr. Follow Ups......

Well, Cannon survived his first Halloween! The last couple of years I (along with Trent if he’s not at work) have spent Halloween evening over at Alan and Melissa’s (Trent’s brother and his wife) house. They have the best neighborhood for trick or treaters. Normally we get to pass out candy over there (and Melissa’s friend Paula seems to think there is a bribe going on there since we manage to be rooked into it each year…HAHA!). This year Alan scared all the kids in the neighborhood while Trent passed out candy and I wrangled our little dr. in the house! Yes, that’s right Cannon was dressed up as a dr. for his first Halloween and he got to wear his very own stethoscope that was his in the NICU! He of course went to have his weekly weight check that day and was all dressed up to see everyone at the office that day! 

Trent and Dr. Itty Bitty McCone going to trick or treat and my Grandaddy's house.
(And yes I was the cool mom that let her 7 month old have his first lick of a reese's cup!)

Dr. Itty Bitty McCone and his Uncle Alan

Dr. Malloy and Dr. Itty Bitty McCone

Since then Cannon and I made our first trip out of town alone together to go to my mom’s house for a long weekend. We took him over to my aunt Pam’s house on Saturday to see some of my mom’s side of the family and meet a few of our close family friends. My friend Megan brought her little girl Kynslee (aka- Cannon’s future girlfriend) to meet Cannon. Megan and I got to share all the ups and downs and happy and sad moments of our pregnancies together. We checked in with each other daily and discussed our dr. appointments and ultrasounds. She was there to see me when I was in the hospital and came to meet Cannon in the NICU on the same day that she was finding out either good or bad news about her own baby via ultrasound (the situation turned out GOOD! Praise the Lord). So basically we shared all and helped each other through everything! I think we both feel like we couldn’t have survived it without one another. We are now sharing all things good and bad about motherhood and having our babies home and HEALTHY! Cannon also got to meet his cousin Taylor (my cousin David’s little girl). Overall it was a fun and very long day for both Cannon and myself.

This is my Granny (my mom's mother) with Cannon and Taylor.

Myself, Cannon, Kynslee, and Megan

Cannon has that "oops I'm busted" look on his face.  Almost as if he's saying "Uh I'm sorry Mr. Tyler.  I won't ever touch Kynslee's arm ever again!"

The kids really liked each other and are looking forward to their date to the zoo next spring.

Yesterday we made a trip to ACH. It was follow up time at the Liver clinic and the Medical Home clinic. First off was our visit with the Liver Dr. He is a new dr. at ACH and very nice. He was so pleased with how Cannon looked and his growth and how he has NO symptoms of Liver problems that he didn’t even want to bother with doing lab work to check it! That was awesome news! He wants Cannon to see the nurse practitioner at the G.I. clinic in 3 months to make sure his reflux is ok and then the Liver Dr. will see Cannon again in 6 months about his liver functions and possibly do lab work then. He also said he does NOT think that Cannon will have liver function problems again. He feels like the liver has repaired itself completely and will not cause any issues down the road. This was FANTASIC news! Then it was on to see Dr. Lyle (Cannon’s neonatologist that follows his development) at the Medical Home clinic. Dr. Lyle was very pleased with Cannon’s development and his growth. He thought that Cannon is coming along perfectly and doing all the right things and has all the right responses to him. He is pleased to see all the new things Cannon is doing and responding to and how well he is eating. We discussed foods that we need to be careful with as Cannon gets teeth and starts food that he will need to chew that could possibly get caught in his esophagus where his stricture (surgery site) is. He told us that we will need to always let him take his time eating so he can chew everything very well and to not tell him things like “Cannon hurry up and eat so you can go outside and play”. He also said that anytime we are traveling and have to eat on the road to not let him eat while he’s in his car seat because of where the 5 point harness hits on the chest could put pressure on the esophagus and cause him to choke. So Dr. Lyle definitely gave us some things to think about and be cautious of. We also discussed Cannon ever having to have his esophagus dilated. We know it will always be something we need to watch for signs of but he feels like since he’s not ever had to have a dilation so far that he may possibly not ever need one. But we will always look for signs of needing to be dilated as it’s not completely ruled out that he would not ever need one. Still that was good to hear. Dr. Lyle said he wants to see Cannon again in 3 months and as long as he feels Cannon’s development is where it should be and that Trent and I do not have concerns he will release Cannon’s development to his primary care physician. That was bittersweet news to hear. We think Dr. Lyle is great and we would love to continue seeing him because after all he’s known Cannon since he was in the NICU, but it was nice to hear him say that because that means Cannon is doing great developmentally and doesn’t need to be as closely monitored by a more specialized dr.

Cannon is starting to sit a little bit on his own when we sit him on the floor. He topples over a lot still but we know it takes time. He will get there. He looks around at all sights and surprises himself when he gets loud! He laughs so much and is the happiest baby I think I’ve ever seen because he very rarely cries. In the last couple of days he’s started opening his mouth and leaning towards his daddy to kiss his cheek. However he will not kiss mommy’s cheek yet. It definitely makes me jealous! Haha! But that’s just the mommy in me thinking “Cannon I’m around you the most so why don’t you want to kiss my cheek?”

Wearing his daddy's razorback hat....and looks like he's wearing a little bit of his lunch on his shirt....oops!

Love,
Christian, Trent, and Cannon

Becoming Hermits

I just got word from Cannon's dr at ACH that he will not qualify for the RSV shots. We cannot decide if this is good or bad. It's good because it means Cannon is healthy! It's bad because it would make this sick season a little easier on him and not as stressful on Trent and myself. Basically, as if we didn't keep him home and try not to let him be around too many people enough already it's about to be even worse! We will now be known as Hermits! We will all be going very stir crazy but we also have to do what is best for Cannon and his health! Please pray for Cannon and that he can get thru this sick season without getting sick and especially not get RSV.
On a good note he is growing so well and changing so much. He has been sleeping with his mattress elevated due to his reflux and we have been lowering it a little at a time. Last night was his first night to have his mattress completely flat. He did great! He slept so great and every time I looked in his crib on him he was sprawled out! So cute! He went from looking huge in the little nest he slept in when his mattress was elevated to looking small(ish) in the crib with no nest. I am hoping that over the next couple of weeks he continues to sleep well laying flat so that I can get back in my own bed in my own room!
Well, we will see all of our friends and family next spring! Haha! It cannot get here fast enough!
Love,
Christian, Trent, and Cannon

What a blessing!!!

Praising God this morning! I just got the best phone call! I wasn't expecting my dad to call with the news he had for me....I figured when I saw his name on my phone that he was calling to make sure I was ok because it was a little bit of a rough day yesterday. But that wasn't it at all. He called to tell me that Cannon's lab results were back and for the very first time ever the results were all COMPLETELY NORMAL!!!!! His liver is functioning perfectly! This is awesome news! The good Lord has definitely watched over Cannon and made sure that this little boys liver was repaired!
Also his g tube site has healed perfectly and is not leaking at all. The only problem there is I'm still looking at that stupid tube every day trying to decide what to do with it. Throw it away or keep it because it was a part of Cannon for so long! Haha! A couple people have said to put it in his baby book!
Cannon also LOVES oatmeal with bananas. He is really liking carrots and I don't know why because I think they taste kind of yucky! He still likes his pears and applesauce. He does not like green beans and we finally gave up on any kind of rice cereal because to get him to take it we had to put so many pears in it we might as well have been giving him plain pears!

Love,
Christian, Trent, and Cannon

EIGHT hours and rolling over!

EEEEKKKK!!!  What a big day today is!!! Trent and I are a couple of proud parents!
As Cannon is getting a little older we have been working towards sleeping all the way through the night without having to take a bottle. He was on a very strict 3 hour schedule. Then slowly we were allowed to let him go 4 hours. Then 5 hours. It took us a while to get him to go 6 hours. Then he’d only go 6 ½ hours! I thought we’d NEVER make it a 7 hour stretch! Then finally one night he did it! Last night he did his first EIGHT hour stretch! YES, EIGHT! I was so excited! I woke up at 4am (which would have been his 7 hour mark for wanting to get up to eat) and waited like 30 mins on him to wake up to eat. I guess I fell back asleep because he started crying at 5am wanting to eat! When I saw 5 on the clock I could have done my happy dance, had I thought I would not fall over!
As if that wasn’t enough for us to celebrate he was playing on his tummy in the floor a while ago when suddenly he ROLLED OVER onto his back!!!!! He has been trying so hard for the last several days to do it and he’d get on his side and get tired and fall back onto his tummy. NOT TODAY! We are so excited! He’s just hitting these milestones and passing them by! I’m going to blink soon and he’ll be toddling all over the house! I guess Trent and I need to make a trip to the store to find baby proofing stuff because I think this curious kid is going to be into EVERYTHING! Time to start cleaning up I guess. Ha-ha!
I just wanted to share these exciting little things!
Love,
Christian, Trent, and Cannon

Cannon rolling from his tummy to his back!

Six months old and the Gastric Tube is OUT!

So in my last post I was saying that the G.I. Dr. wanted us to have Cannon keep his g tube through the winter in case he got sick and did not want to eat we could still give him his nourishment. So at that point we made an appt. with the surgeon to get a new g tube placed because the one he had was not very stable. It was able to move around quite a bit and you couldn’t tell if it was further in his tummy than it was supposed to be. So the next size tube he could get was more stable. It had something on the inside and the outside that would keep it more in place and this one would get us through the sick season then he could get it out all together! We arrived at the surgeons office and quite frankly he was really annoyed that Cannon even still had a tube! He said basically that Cannon was nearly 6 months old and had not used the tube since he was in the NICU and there was no reason that if this child is eating and taking all his meds orally that he should keep a tube. He also said we need to treat this child like a normal child and normal children don’t run around with tubes for the “just in case” moments and that if Cannon were to get very sick and wouldn’t eat he’d be admitted to the hospital and get a feeding tube until he’d eat again. Also this is much less invasive! So his plan was to call the G.I. Dr. and tell him that he thinks it should be out! The nurse practitioner from the G.I. clinic called Tuesday about mid morning after our appt. on Monday at the surgery clinic and left me a voicemail just saying to call her back. I tried calling back an hour later, and a day later, and two days later and still no call back. Thursday night after Cannon’s bath Trent and I noticed the tube was leaking around the skin. So we tried to keep it in until we could at least hear what the nurse practitioner at the G.I. clinic said before we had it taken out on Friday morning. Well, I had a long night of changing gauze and tape and clothes that had been soaked through rather quickly and as I was changing it Friday morning at 7am the tube just came out around the gauze and tape! However, the little mushroom cap that kept it stable on the inside did NOT come out on the end of the tube. This would be the cause of the leaking because the tube broke! No worries though because Cannon has passed the mushroom cap part of the tube and the hole where the tube was is healing very nicely. And no more leaking! So, on the day that Cannon turned SIX MONTHS OLD, he got his very last tube out! We couldn’t be happier for him! We have decided after all this time of changing a diaper and then tucking the end of a tube in the strap part of the diaper that it’s weird to not do it. Out of habit I keep trying to grab a tube and stick it in there. I guess one day I will forget all about that! I think even Cannon knows it is not there anymore and is so happy about it!

 We went shopping for Cannon some new winter clothes last weekend. We didn’t have any long sleeved stuff for him because once he was born so early I just wasn’t sure what size to buy. I’m glad I held off because I would have bought all of the wrong sizes! The few things I had bought recently I had to take back because I bought the wrong size! Fortunately I was able to find the exact same thing in the right size! We got him a lot of really cute stuff! I think I’m going to have to tell the G.I. Dr. they will have to see us more than once a month because he’s got some really cute outfits to wear and nowhere to wear them to since sick season is about to hit and he’s not supposed to be around people! Ha-ha!

This is the first picture I took of Cannon when I first arrived to meet him after I got out of the hospital.  He already had his g tube in his tummy.  I don't have a picture of him without his tube.  Since the tube came out it has had a bandage over the site.

Just one of the shirts we bought while shopping last weekend!

Love,

Christian, Trent, and Cannon