HELLO???

Is anyone out there????

Anyone still with me????

Or have you all given up on me :(

Since it's been a while, I will touch on a few things that we've been up to:

 

*Ear tubes! In April, at 11 months, Paxton had PE tubes placed. From December to March, Paxton had 5 ear infections. You wouldn't know it if you were to see him during the day, but his nights were painful (for all involved)!  A 15 minute procedure, 15 minutes in the recovery room, 40 minutes of inconsolable crying, and 12 oz. of formula .... and he was back to himself. Other than developing a high fever for a couple of days afterwards, everything went great and we haven't had an ear infection since!



 

*6 month Oncology visit.  I'm always amazed at how fast 6 months goes by. On May 3rd, Cody received another clean bill of health. I knew it didn't matter, but I had to ask the dr. what he thought. When Cody was initially diagnosed, he was given a survival rate of 3-5 years. This July, it will be 8 years! Why? Why hasn't his cancer come back? The dr. really doesn't know. He said, unfortunately the vast majority of those with brain cancer, do not have the outcome that Cody has had. Looking at where we go from here, there isn't much out there in terms of "guidelines" and we have to do what we feel comfortable with. The research just isn't there. We decided to switch to yearly checkups. It was a difficult decision for both of us. But Cody felt it needed to happen at some point, and he was comfortable with now. His dr. threw out the idea of "divorcing" at the 10 year mark.....but we weren't so sure about that. We'll cross that bridge when we get to it :)

 

 

*Pacman got his first hair cut! The week before turning the big "1" we thought he needed cleaned up a bit. That's basically all they did....cut a tiny little bit around the neck and around his ears. I wasn't impressed. And when they charged me $15.00 for it, I really wasn't impressed. He was such good boy though :)

 

 

*May 14. My baby turned "ONE"!!!  Wow, what an emotional day that was. I can't believe how fast the past year flew by. He has been one amazing addition to our family.

{i'll post again with pictures of his party}

 

*May 23. I was done with school for the summer. An AMAZING feeling :)  We've started it off well:



 

 

*May 25. Paxton's 12 month well-baby check. And let me tell you...he is, one well baby :)

 

Weight:  26lbs. 12oz. (99th percentile)

Height:  30.75 inches (75th percentile)

 

Eating: Paxton's transition off of formula and onto whole milk went smoothly. And the kid eats any table food you put in front of him. We haven't found anything he doesn't like :) He drinks from a sippy cup, but still would much rather have his bottle.

Development: Paxton was right on track in all areas developmentally, and exceeding in fine motor! He has not yet started to walk (but oh, we are getting soo close now!) but cruises all over the place along the furniture. He loves to talk. His favorite word is "NO" and he uses it all.the.time! Other words include: "mama, tickle, cheese, and dada". We've really been working on signing "more and all-done" but he usually just laughs at me.

Behavior: Paxton continues to be a good baby, but he definitely does not like to be told no or redirected or have things taken away from him. He has learned to squeal with the best of them! He has developed a temper and will throw himself to the floor and just sob.

Sleep: This is an area we were struggling with A LOT!! Paxton was waking up in the night anywhere from 1-5 times a night. And the ONLY thing that would get him back to sleep was a bottle. We had cut down to just giving him 2oz when he would wake up, but that seemed to be all he needed. Honestly, we tried it all, but sucking on a bottle was what he needed. (**I am happy to report, that Paxton is now sleeping through the night! One night, it just clicked and he hasn't had a sleepless night again. Yay!!!)

 

 

 

Our summer is flying by already! I can't believe we're half way through June. Hopefully I'll write more often :)

 

 

{thanks for sticking with me}

 

 



castle of care

Paxton spent his 10 month birthday in the hospital.

 

When I took him to the dr. I actually had respiratory concerns. He had been coughing a nasty cough along with congestion. He was very irritable, not sleeping, and not eating well.

 

But his lungs sounded fine. His chest x-ray was clear. His influenza and RSV panels came back negative. The dr. said it was just a nasty case of viral "crud."

 

The following 24 hours, he refused almost anything to eat/drink. And then, the diarrhea set in. Pooping every hour and taking in no liquids, dehydration happened quickly. The dr. wanted to admit him to give him some IV fluids and make sure the diarrhea wasn't going to be an issue. He thought an overnight would take care of it.

 

He did test positive for C.diff. (clostridium difficile). Which he likely got from being on two consecutive doses of antibiotics to treat a stubborn ear infection. So while I initially was concerned with his lungs, he ended up hospitalized due to diarrhea and dehydration.

 

The entire time he was there, Paxton did not act sick at all. He was his happy, playful, active self.

But this caused his stay to be very difficult. How do you keep a 10 month old, who feels good, with an IV in his foot, to be "not so active?" About impossible!!  They didn't want him to stand on his foot as much as possible....that was easy for them to say!

 

It took both Cody and I to be there. I just couldn't do it by myself. If he wasn't sleeping, someone had to be holding him or at his bed side constantly to try to keep him off of his foot and not rip at his tubes and cords.

 



He was admitted around 5:00 and received IV fluids for the first 24 hours, as well as being put on a clear liquid diet. He loved himself some gatorade and jello! We didn't see the dr. until the following evening around 6:00. He then wanted to start him on Flagyl, a common antibiotic to help treat c.diff. This was given through IV. He continued with the diarrhea, so he continued on the clear liquids, but he still wasn't drinking a whole lot.

 

But he was still happy!

 

The next step was to turn down the IV fluids in hopes he would start drinking more on his own. Then move him to his regular diet. AND, get him to start taking the Flagyl orally (because this was going to be something he would have to take for the next 10 days at home), however we knew this was going to be the tricky part. The dr. warned us it tastes horrible and many kids aren't able to take it.

The first attempt, he threw up. Then we tried mixing it in a bottle and giving it to him, and he threw up. He was soo irritable that the nurse tried Tylenol a little later in the evening, and the second that hit his mouth, he threw up. The next day we tried again, and he threw up. We needed to visit with the dr. again to see what he wanted to do about this.

The next morning, I was holding Paxton on my lap and feeling his legs and the leg that his IV was in felt huge! and hard!  We called the nurse in to have a look. Sure enough, because of all the moving he was doing on his foot, his IV had infiltrated. Therefore it was no longer in his vein and everything from the IV was going right into the tissue. It needed to come out.

His foot was soo swollen that he couldn't (or wouldn't) bare any weight on it. They said the best thing for it was to get him up and moving on it....but he wasn't having that. He would pull up to stand and just hold his leg up and whine.

We met with the dr. that morning. Everything had been going well, except the Flagyl.  He said we obviously can't keep him in the hospital for 10 days just to give him the medicine through the IV. There was another medication option, but that would have cost around $800. We filled the prescription for Flagyl and just hoped we would be able to get something down him the next 10 days.

He said we could go home.

We gave the little man a bath, packed our things, and headed home.

 

Once we got home, we gave him his first dose of Flagyl. He threw up. After that, he never puked again. Now, he certainly didn't like it and ended up spitting most of it out. But that, we could handle.

 

And he is back to being a healthy little guy!

9 month well baby check

Paxton had his well-baby check in February (just a little behind)....and he is growing like a weed!

Weight: 23lbs. 6oz. (87th percentile)

Height:  29.5 inches (82nd percentile)

 

 

Here is what little man is doing:

 

.the kid loves to eat. he is eating 3 solid meals a day and will fuss anytime he sees anyone with food. he is drinking about 34oz of formula throughout the day as well.

 

.eating baby cereal, fruits, veggies, and loves to feed himself table food.

 

.starting to use a sippy cup

 

.has two bottom teeth and three top teeth (working on his 4th)

 

.crawling all over. he was early with all his motor skills, i actually thought he might be walking by now. he loves to walk if you hold his hands. he walks along furniture. and is just starting to be able to stand for a few seconds alone.

 

.wearing size 12 or 12-18 month clothes

 

.wearing size 3 diapers

 

.babbling like crazy and will imitate speech sounds.

 

.hasn't demonstrated any stranger anxiety. he will go to anyone.

 

.he is such a lover. he loves to snuggle his head into your neck and always leans in for a "kiss"

 

.responds to his name. loves to play peek-a-boo behind the curtains.

 

.taking 1-2 naps a day

 

.loves to take a bath with the big kids.

 

.baths usually start around 6:30. by 7:00 he is starting to get whiney. he drinks his bottle and goes right to bed.

 

.occassionally will sleep through the night, but often wakes up once or twice.

 

 

this little guy is the happiest, most content, laid back baby....we are so lucky he chose us!





i know it's been a while...

so here's a photo dump...

until i can sit down and write some more...

 

{an absolute favorite ~ a special visitor at daycare over Christmas}

 

{a girl and her grandpa}

 

{not sure who was supposed to be watching him}

 

{not feeling so well}

 

{i think she secretly wishes she could still have one}

 

{my lunch date}

 

{"jumpin'" at pizza ranch}

{little flirt}

 

{momma's boy...our nightly routine}

 

{super bowl fun with our friends}

 

{he's into everything!}

 

{grandma can't eat anything without these 3 swarming in}

 

{calling themselves "farm boys"}

 

{my three valentine's}

 

{cartoons when they're crabby, solves everything!}





 



you never know what you're going to get...

Our life never has a dull moment. If you weren't aware, Cody spent a couple days in the hospital this past week.

Last Saturday Cody started to notice a very different feeling with his heart. He mentioned it to me that day, saying he just "didn't feel right."  After that, he never said another thing.

Monday night he had gone to bed before me and I heard him hollar at me from the bedroom. He wanted me to come in and listen to his heart. I laid my head down on his chest and immediately could tell something was not right. He said it had been doing this continuously since Saturday and he thought maybe he should go in.  ya think?!?  I'm not kidding, his heart was out of control!!

So I left the room, shut off the light, and soon the snoring began. I started to get nervous, so I called My Sanford Nurse to get some advice. She asked if I could tell what his heart rate was. I said, it was soo fast and irregular that there isn't anything I would even be able to count. She had me go in and do it anyway. So you can imagine, he wasn't very impressed that (#1) I woke him up and (#2) I had called the nurse.  I counted right around 100 beats per minute, but I knew that was a way low estimate because those were strong beats, there was all kinds of other stuff going on in there too. She told me that if it were to get to be 130 or higher, he needs to go to the ER. In the back of my head, I knew it had to be higher than that. But I also knew I wasn't going to get him out of bed to get to the emergency room. She told me this is not something to take lightly and that in the morning he MUST call and get into the dr.

The next morning I made him an appointment in Brandon. They did an EKG and his heart rate was between 130-140. The dr. said Cody needed to see Cardiology right away, hopefully yet that day. When the nurse called over to Cardiology, they didn't even want to see him, they said he had to go straight to the emergency room.

We drove over to the ER and things moved pretty quickly when he got there. Once in the ER, his heart rate was running between 160-180 beats/minute and very irregular. (everyone is different, but we were told an average heart rate should be around 70). They started some medication to help slow his heart down. Did another EKG, a chest x-ray and labs.

They said he had Atrial Fibrillation - an electrical problem within the heart causing an irregular and often fast heart rate.  The upper chambers of the heart were basically shaking, beating very chaotically and irregulary- out of coordination with the two lower chambers. This doesn't allow for efficient pumping of the blood throughout the heart, therefore blood pools within the upper chambers and can cause blood clots. Common treatment includes a cardioversion (an electrical shock) to get the heart back into a regular rhythm. But because Cody had let this go on for more than 48 hours, he was at an increased risk for blood clots. They said they would need to admit him to the heart hospital and do further testing. They don't want to shock you without looking for a clot, because if there were any clots once the heart starts beating regularly, it could push the clots right through and now be at an increased risk for stroke.

Once in the hospital they did an ECHO, which is an ultrasound of the heart, to take a closer look. Other than being out of whack, he has a nice strong, healthy heart. All of the tests came back normal, indicating that there wasn't a specific cause for this to happen. Sometimes, it just happens.

He was scheduled on Wednesday morning at 7:15 for a TEE test, putting a tube down the esophagus to get a better look at the back of the heart, looking for blood clots and if there were none, they would do the electrical shock, all while he was sedated.

But around 4:00 that morning, after the medication had gotten his heart rate slowed down, his heart flipped back into a regular rhythm all on it's own!! We were a little nervous about the treatment, so the fact that he didn't have to do it, was awesome news! Wednesday, Cody said he felt so much better. He could tell that his heart wasn't about to burst out of his chest, he didn't feel so tired or out of breath, and he was a lot cooler. His heart was no longer running a mararthon like it had been for the past four days.

We're not exactly sure why we have been put through so many trials and tribulations at our young age, but what we do know is that God is truly in control of it all.

Cody is nothing short of a miracle!!

Christmas #5



Christmas #4



Christmas #3



Christmas #2

Christmas with Cody's Dad