It’s amazing how many emotions you can go through in one week.  This last week has definitely been one for the books, lots of hills and valleys, and lots of tears and laughs…and lots of food…I don’t care what “they” say, sometimes good food (mainly popcorn with lots of butter and salt) does make you feel better :).

We had a really hard ultrasound this last week.  This was the first time that Paxon was facing up, which was a good thing, but it was also really startling because we got a lot of clear images of his cleft lip/palette.  It’s pretty awful.  It goes so high up that it’s also pulling down the side of his nose.  Tomorrow we meet with a cleft lip/palette surgeon, and we’re really looking forward to talking with him about the surgery, what he thinks Paxon’s face will look like afterward, and we’re hoping he’ll have some information for us on giving him enzymes and feeding him until the surgery.  Both Jeremy and I have been avoiding Google and doing any searches on the subject for fear of seeing too much.  We’re hoping the surgeon (who we have heard nothing but wonderful things about by the way!) will be able to educate us and prepare us for taking care of our little peanut…hopefully all of this with avoiding any “before” shots.  I’m thinking naivete may serve us well in this area.

Then the ultrasound tech got really quiet for a really long time…like 45 mins.  The only thing she said during that time was, “your baby’s heart is changing.”  Um ok, let me try to hold it together and not bust into tears while you’re looking for fine details on my baby’s heart all while my mind is racing thinking about the millions of different problems that could be wrong with him, sigh…if you can’t say something nice, don’t say anything at all!!!  So then a doctor, who either doesn’t have kids or was having a really bad day, broke the news to me saying, “well you know your baby has a lot of issues, so this shouldn’t surprise you.”  Seriously, lady?!  She told us they are seeing a narrowing of the Aortic Arch in his heart, and the right side of his heart and his heart as a whole is larger than it should be.  She continued to talk about Paxon’s life so flippantly with this “we told you so” attitude.  Needless to say we left there feeling defeated, like the initial diagnosis we received about losing him early was going to come true for our sweet boy, and like we were the only ones fighting for his life.

Then I was so completely blessed by my friends Krista and Natalie who planned and organized a beautiful shower in honor of Paxon, with all of the girls in our Bible group.  It was such a beautiful morning with lots of great food (again, joy!), great laughs, and a really sweet prayer time.  It was a perfect morning, and the best way to get me out of the black hole our ultrasound had sent me into.  Here are a few pics from our morning together.  Thank you girls for all you did to make a special morning for me, and for blessing our family in more ways than I can share in this little blog post.

Monday, we then headed in to see our Cardiologist about the ultrasound findings.  Again, another couple of hours of them looking at Paxon’s heart and trying to figure out if there was indeed something to be concerned about.  Our doctor met with us afterward and basically said that he sees why the other doctors might be concerned about a few things, but that he’s not seeing anything that we haven’t seen before (2 holes in his heart, and leaky valves) and that we shouldn’t be concerned about inducing or immediate surgeries.  Yeah, we were pretty excited about this appointment and immediately spun our wheels back into hopeful mode.

Then my Children’s Ministries peeps threw an amazing shower for us at the church.  They thought of everything, an owl cake, great food (including popcorn!!!), a devotional from our Pastor on sisterhood which was so perfect, and they had it setup like a little carnival that people could play games for $1.00 to win a candy bar.  Well, you want to know how much money we took home for Paxon expenses…$740.00!!!!  Simply amazing!!!  And, such a wonderfully practical way to serve our family.  Jeremy and I were just talking tonight about how I’ll probably be in the hospital for weeks and need to buy meals, and he’ll be driving about 70 miles round trip to see us, so we’re tucking some cash away to pay for things like this, and saving the rest for the enormous amount of co-pays and medications and whatever else will come our way.  Anyways, we were so incredibly blessed again by so many wonderful friends!

Then, I got a call today from our Cardiologist again.  He said, “I’m sorry, I may have given you false hope.”  And preceded to tell me that he showed Paxon’s ultrasound images to his team and they’ve all decided that Paxon may indeed have a coarctation (narrowing) of the aorta going on, and they want us to come back in a few weeks so they can look again.  He seemed way less confident this time.  He talked about a surgery that they may have to do on Paxon pretty much right away after delivery where they go through his side under his arm.  And, he recommended that we deliver at a different hospital so that we can be closer to where he would need to go in case he needs this surgery.  Nothing is definite yet, but just another example of how this last week has been a roller coaster for us.

So…as our last few weeks are filled with appointments and so many unknowns, we are scared, yet we are finding peace in what’s to come.  This truly is a peace that only God can give.  We know He is answering prayers, and we cannot thank everyone enough for begging God for His peace and mercy upon our family.  We’re so thankful.  It seems like every day we get an email or a card from someone we don’t even know saying they are praying for our family.  It’s incredibly humbling.  We don’t know why this is happening to our family.  We have so many questions that we may not know the answer to until that day we meet our God face to face, but we do see Him through all of this.  He loves us.  He is with us, and he’s promised for good to come from this.  We don’t truly understand how that can be, especially when we think about losing our child, but this is where true faith and trust in Him happens.  This is where what we know as truth becomes what we believe and how we live.  That doesn’t mean it’s easy, because it downright sucks at times…but there is peace for what’s to come.

I know I’ve said it a million times, but we truly cannot thank everyone enough for all of your thoughts and prayers and your love for our family.  It’s overwhelming.  We love you.

We had the best time with our friends Peter and Meagan and their two cuties in the mountains for Thanksgiving!!  The weather ended up being perfect.  It was cold enough so that there was some snow for snowmen, and so we could see all the kids bundled up in their cute snow gear, but not too cold so that Peter and Jeremy could take the kids on adventures…which mostly involved throwing rocks and sticks into the river, but who doesn’t think that’s fun :).

We had such a great time doing what mountain people do – hanging out, eating a lot of food, and sitting around the fire.  This was officially our last trip before little Pax comes, and we were so thankful to have celebrated Thanksgiving with our friends.  We may have just started a little tradition with our families…although, next year may just be a pizza Thanksgiving, because in case you’re wondering what it’s like hauling a 20 lbs turkey and all the ingredients for your favorite Thanksgiving dishes on a 4 hour car ride it’s a stupid idea.  Just so you know.  Meagan and I were laughing at how crazy we were, but the meal was delish and we learned our lesson!

And, I just had to get a picture to remember these sweet moments.  Unless Sammie was busy with something else, she would want to sit by Asher while he did his treatments, and this just warmed my heart.  And, here is a picture that Meagan took of the two cuties snuggling.

First, a little “hi” from the A-man.  This is his new favorite toy.  He’s constantly asking us to go for a walk or to the park so he can drive his car :).

~ ~ ~

We got to see our baby today, and we’ll probably get to see him every week or so until we meet him face to face.  Six more weeks from today until our due date.  We got a few updates on how he’s doing…

Paxon is a little over 4 lbs right now!  We were so excited to hear that number, because just a month ago he wasn’t quite 3 lbs, so he’s chunkin’ out, and I’m certain it has nothing to do with the fact that there’s always a cookie or a donut hanging out of my mouth, ha.  This puts him in the 18th percentile, which sounds kind of scary, but they said it’s a good place for him to be and they usually don’t get concerned unless that number is around the 10th percentile.  So we’re counting this as a praise!

We also got another look at his cleft lip and palette, and again the tears just flow when I see his little face.  The ultrasound tech said it’s 1 cm wide at it’s widest point…that just sounds awfully big on an itty bitty mouth.  We have SO many questions about how to care for him now that we’re getting really close to seeing him.  Our biggest concerns are feeding, and figuring out how we’re going to be able to get him the enzymes he needs to process the food.  I’m really worried about him aspirating all of this, and no one has told us or shown us how we need to care for him.  Jeremy and I made it very clear to them today that we need information and we’re frustrated no one has spent time with us on this topic.  It was pretty amazing how quickly everyone responded, and the manager and a different doctor came in basically telling us they were sorry and that they screwed up.  They said that we should have already met with the surgeons and consultants at this point.  So, now that means we have a lot more appointments to fit into these next few weeks, but we’re both pretty anxious to get more information on how we can care for him.  There are so many things that are completely out of our hands, but giving him meds and getting him food are ways we can help him and things we’re going to be dealing with right away.

Meconium Ileus – this is something that has been high on our radar since we found out that Paxon has cf.  It’s basically a bowel blockage, and what we understand is it can either be treated with some meds to release the blockage, or it can cause some pretty serious problems resulting in immediate surgery.  Today they noticed that Paxon’s ileus is a little enlarged, enough that they want me to come in every week for the next three weeks at least to look at it.  He said there is nothing to be concerned about now, but they need to watch it to see if there becomes reason to have Paxon come early so he can be treated.

For the last few ultrasounds Paxon has been breach.  I know that’s pretty common, but of course I was starting to wonder if a c-section was the inevitable.  Well, we found out today that his head is down, which is another praise!  Let’s hope he stays that way, because he’s sure moving around a lot now :).

We’re getting close now, and I can feel myself getting a little more anxious about everything.  We still don’t know so many things, and we probably won’t until we see him.  It’s scary.  We’re not sure what our lives are going to look like when little Paxon joins it, but we’re excited to welcome him to our family and give him lots of hugs and kisses.

Thank you so much to everyone for all of your thoughts and prayers for our family!!!

Daddy was gone for 4 days this week, and I know that’s not really THAT much time, but it felt like an eternity.  So Asher and I ran ourselves ragged around town causing trouble and trying to make the time go fast.  Can’t think of a more loveable, cooler dude I would rather spend time with…

I forgot to mention in the last post that Asher didn’t actually think we were in California until we got to Disneyland.  When we woke up the first morning we were there we told Asher we were going to the beach he said, “nnnnooooo, I wanna go to California!” meaning Disneyland, ha!  So when the day actually came and we were going to Disneyland he freaked.

We had the most beautiful day again at Disney, and had such a fabulous time together as a family!  We were there for 12 hours, and Asher was awake and going strong for 11 of those 12 hours.  We couldn’t believe he made it that long, but we were a little bummed when he decided to crash right before the fireworks and snow on main street!  Oh well, Jeremy and I enjoyed some peaceful shopping and taking in the night scene.

The place we were staying was about 30 mins from Disneyland, and we didn’t want to have to leave the park to do his treatment and drive back again.  So the week before I spoke with the First Aid office on site and they were so helpful!  I figured this wasn’t a new thing for them since they deal with a lot of children with medical needs.  They told us they would store all of his equipment and meds, and allow us to use one of their private rooms to do his treatment in.  So that’s what we did!  It was so nice to be able to pop in there, give him what he needed, and pop back out to the Christmas parade.

On another medical note, we got a medical pass for Asher and bypassed ALL of the huge lines!!  Just to give you an idea of how awesome it was, we walked up to Peter Pan and were on and off the ride in under 10 mins.  When Jeremy and I went years ago it took us about an hour to get on that ride.  It. Was. Awesome.  If you have a little cfer or someone with medical needs and want to try this too, all we did was have our doctor write a letter on our behalf stating what Asher has, and why waiting in lines and being around crowds of people are not good for his health.  We took this letter (but honestly, we didn’t even really need it because we had all of his equipment with us at the time) and went to City Hall which is right off main street.  We told the nice man our situation and he gave us a pass to be able to go through all of the handicapped lines.  We were usually the only ones there, or sometimes we were waiting with one or two other people.  It is so incredible that Disneyland offers these services to people and children!!!

Asher got to meet Woody and Jessie, which we thought was going to rock his world…except for the fact that he was completely terrified of them!!!  He was so scared, but we figured he would love to have the picture after wards, so we pretty much dragged him kicking and protesting.  Of course after we left he asked to go back and see them.  Classic.

The Christmas parade was a highlight for all of us!  Snow White even blew Asher a kiss.  He’s very proud to talk about this every time we look at this picture :).

Evidence that Asher was beyond exhausted.  The last time he fell asleep on my shoulder was…well, I don’t even know…I’m pretty sure he wasn’t even walking though.  It was so sweet.

Thanks, Disneyland, we’ll be back!!!

So we pretty much had the best weekend!  Some lovely friends offered us their beautiful (seriously, it looks like it’s straight out of a Pottery Barn magazine!) condo in San Clemente for a long weekend.  It was so, so wonderful to get out of town and enjoy a day at the beach, and a day at Disneyland (more pics of that to come!).  We needed some time away together with just the three of us, and this was the perfect medicine.

We had the most beautiful day at the beach just hanging out.  Asher wasn’t quite sure of the whole ocean thing at first, he just stood back and examined it for awhile.  He was really nervous about even getting close to the edge of the water…that is until Jeremy showed him that he could throw rocks into the water…then, they became one…and he threw a fit when we had to go, ha!

We sailed right through Asher’s nap, and instead we had lunch on the pier.  Jeremy and I just pretty much laughed our way through the entire lunch.  The lack of sleep and hours in the sun made Asher look like he just threw back a 12 pack of beer with his wobbly head, glazed over eyes, loose gestures, and slurred speech.  He said something hysterical at the table, and to the people sitting next to us and now we of course can’t remember, but I do remember him in his drunken stuper giving the waitress two thumbs up and saying, “it’s peeeeerrrrrfect!”  Pretty much sums up the weekend :).

On a side note, we got in last night and right away brought Asher in to Phoenix Children’s Hospital this morning for his 3 year appointment.  Nothing like a 3 hour appointment with a child who just came off a Disney high…but that’s a whole separate post.  I did want to make note of the fact that we had a praise with Asher’s weight!  He stepped on the scale and weighed 34.2 lbs!!!  We made him get on and off again a few different times to make sure that was his actual weight, after the 30 lbs scare last week.  Jeremy and I were elated with these numbers, and frustrated that we got such a bad read from his Peds office last week.  Jeremy and I have been agonizing over this weight drop all weekend, thinking that this might be it, we might be heading towards a G-tube.  Asher hasn’t gained any weight these last few months, and that’s still a concern.  We still need to increase his fat/calorie intake and we’re trying a different kind of enzyme with him to see if that helps, but the panic feeling has subsided.  Not gaining any weight isn’t great, but a 4 lb weight loss is just plain scary.  We’re so thankful for these new numbers!!!

Let’s talk for a minute about how beautiful it is here now…sigh…bring on the parks, and picnics, and windows open, and, and, and for the next 7 months…ahhh, we made it!

I feel like there has been a lot of cf stuff happening around here lately, so I thought I would jot some things down.

WEIGHT – First, because it is the freshest on my mind – we had Asher’s 3 year check up today at his pediatrician.  I was shocked when I saw Asher weigh in at 30 lbs exactly.  I knew going into the appt that his weight was probably going to be down, because he just looks skinner to me.  But, when you have an active boy, I think you always chalk it up to all the running.  His pediatrician and I talked and he said that he weighed 30 lbs at his 2 year appointment, and when we were just in 2 months ago he weighed 34 lbs.  Ugh.  He’s lost 4 lbs in 2 months.  Keeping weight on can be really challenging for cfers.  Jeremy and I have seen a few signs in his trips to the bathroom (trying to be discrete!) that we’ve been concerned about, but his nurse said that he is maxed out right now on his enzymes and prevacid.  So…I don’t know what that means.  We’re going to crank up the fat content in this house until his 3 year appt next week with his cf care team at PCH, and see what they say.  Seems like we need a new plan for our little man.

LUNGS – Well since we finished the Hypertonic Saline clinical study, we got approved to put Asher on the REAL Hypertonic Saline.  Oh my gosh, we LOVE this stuff!!!  We were definitely on the placebo, because the first time we put his mask on with this new med he started coughing like crazy.  We like coughing.  Coughing means something is being moved out of his lungs.  It’s an expensive med (for some reason our insurance doesn’t cover it, even though it’s basically just a jazzed up saline solution – but I’m not bitter, ha!) but it is totally worth every penny!  Asher has been sick this last week so we’ve had to put him on an antibiotic and up his treatments.  I really believe this Hypertonic is helping to move this cold out of his lungs quicker.  Can’t recommend it enough if you have a little cfer!

PILLS – In the morning, Asher has 3 enzymes (Creon 12’s, they are just shy of a horse pill), 1 Culturelle, and 1 Prevaid pill to take.  Just a couple of weeks ago he grabbed all 5 pills, shoved them in his mouth, took a swig of his drink, and started chowing down his breakfast!  I just stood there with wide eyes and my mouth open not sure what to say.  And then it just hit me that taking pills for this kiddo is no big deal.  I shouldn’t make a big deal about it, because he certainly isn’t.  So, now he takes all 5 pills at once.  I’m so thankful for how easy it is to get him to take his meds.  This liquid antibiotic that he’s on tastes disgusting.  The first time I put it in his mouth he swallowed it, shivered, and looked at me and said, “what’s that?!”  I told him it’s medicine to help with his cough.  The next day I thought we were going to have some troubles because he knew how bad it tasted.  I dumped it in his mouth, he again shivered, took a drink, and said, “help my cough.”  Sigh…Asher you’re such a strong boy.

AZ’S FINEST – Every year the Cystic Fibrosis Foundation selects about 15-20 people to spotlight as Arizona’s most influential trendsetters, honoring their professional and charitable accomplishments. Those selected exemplify leadership qualities, are active in volunteer roles and have excelled in the Arizona business community.  We love the AZ’s Finest people, because they rake in A LOT of money for the Foundation every year.  Well at the dinner to congratulate the new members, guess who’s video was shown :).  This is the second video Jeremy made for our Silent Auction.  So proud of both my boys!!!

PCH FAMILY DAY – I was able to speak at the PCH Family Day last month and just shared a bit about our greatest challenge in raising a toddler with cf, the one thing I wished someone would have told me about raising a cfer when we got Asher’s diagnosis, and any tips I had for other parents.  If you know me, speaking is not. my. thing.  I get sweaty and really nervous.  But it ended up going just fine, and I was so thankful to have met more mommies with kids with cf.  I’m so thankful for blogs, and facebook, and to be able to connect with other parents who are walking this same path with us….

…speaking of that!  I got to finally meet, Emily, one of my favorite cf mommy friends this last week, and oh how I wish we lived closer together!!!  Her best friend since Kindergarten, Shannon, introduced us when Emily’s little girl was first diagnosed.  We started talking soon after that, and one day when there is a cure for cf we’ll still be great friends.  Love you, Em!

BREATH OF LIFE GALA – Jeremy and I had the privilege of being invited to attend this Gala at the Ritz Carlton a few weeks ago.  Talk about fan-cy!  It definitely was the fanciest event Jeremy and I had ever been to.  It was so funny standing out front of the hotel waiting with everyone else for the valet people to bring us our cars.  BMW’s, Porsche’s, some other fancy car I didn’t know, and then here comes our Toyota Rav4, ha!  It was hysterical!  We got invited to go because the Foundation uses Asher’s video all the time when they are meeting with people.  So much so that the director told me she runs through the office frantically saying, “where’s my Asher video?!” whenever she has to leave :).  And, now the last few times I’ve been around her she’s introduced me as “Asher’s mommy”, ha!

3RD ANNUAL SILENT AUCTION!  I can’t believe it’s year 3 already!  I’m not going to give too many details away right now because we’re going to be launching something new this year, but I did want to put a save the date plea out.   Can you put a big circle around SATURDAY, APRIL 2ND FROM 4:00-6:00p pretty pleeeeeaaaaaase with sugar on top :).

Paxon, I just thought I would introduce your brother to you before you come so you can be a little prepared for the overly energetic, overly loveable big Ash-man.

– He is on a mission every day to beesh the bad guys in our home.  He works really hard to protect us all, and he’s going to love protecting you too.

– He loves babies…which means he’s going to love you.  He always wants to help other mommies however he can with baby stuff.  And he’s definitely concerned whenever a baby is not happy, so I’m sure he’ll help you lots with bringing you toys and dancing to make you smile.

– He loves to run.  So you can join me in saying, “On your marks, get set, go!” and cheering him on.

– You’re going to hear a lot of phrases over and over again.  “Why?”, “How’s it works?”, “Let me show you something!”, “Look, look!”, “Watch me, Watch me!”, “You sleep good?”, “You ok?”, “Ah, bummer!”, “Let’s play a game!”, “Are you serious?”,”Let’s beesh the bad guys!”, “I love you soooooo much!”, “Be careful of that one!”, “Ewww, dog poop!”, “That’s the biggest semi ever!”  All of these at a really high volume, so don’t be alarmed.

– For the most part he’s really generous.  When he asked what happened to his playroom, and I told him it was your room now he said, “Oh, ok!”

– He’s going to be able to show you how to do your treatments, and I’m pretty sure he’ll hold your hand and introduce you to all his favorite shows.

– He’s going to have A LOT of things to tell you…about everything…multiple times…with no breaks in the conversation…but he’s so sweet.  You’re going to learn a lot from him and love his excitement for life.

– Your big brother is a special boy and he is going to be your best friend.  You couldn’t hope for a better one to have.

Well, the pictures on this blog are really slackin’ lately. The bigger I get, the less energy and flexibility I have. I barely even got a picture of Asher dressed up as Batman!  Note to self for future Halloweens, it’s probably better to ask Asher what he would like to be the week before Halloween, instead of a month before, because there are too many opportunities for him to change his mind and get sick of the “Batman” idea. Even the morning of Halloween I asked Asher if he was excited to dress up like Batman, and he said, “No, you be a Princess, and I be a Gecko!”  Ha!

We had a great Halloween with a bunch of friends and lots of excited kids running around!   The kids decorated their Halloween buckets, we had a chili cook off and lots of yummy food, we hung out and kept all the superheros on equal ground, and we paraded around the neighborhood collecting as much candy as we could!  It was such a fun night, and we already have plans to repeat for 2011 :).

Paxon Ray…he’s growing!  We had an ultrasound and found out that he’s in the 20th percentile for weight, and below the 50th percentile for overall growth, but the tech said he’s not that far off from the 50th.  Paxon is breach right now, and his back was towards us, so we didn’t get to see as much of him as we were hoping.  It’s nice to know he’s breach though because that sure explains how I’ve been feeling with all his karate chops to my back, ha!  The only thing she really noticed are that his humerus and femur bones are definitely shorter.  Short stature is one of the markers for the chromosome deletion.  So, we know he will be small, we’re just not sure how small.

We also had a follow-up heart appointment.  This was a big appointment.  We were a little anxious about it, because the doctor told us that when we left things could really go either way with the growth/function of his heart.  Well, for the most part things got better!  The doctor classified what Paxon had after our first appointment as Cardiomyopathy, which basically means he had a weak heart.  Well after a very extensive ultrasound he said that Paxon has overcome all these issues (oversized ventricle, thickened valves, heart not pumping as strong as it should).

Unfortunately, what he does see is that his heart has two holes in it.  One hole is small and one is what he said was “small to medium sized…about 3mm across.”  Paxon was laying just in the perfect spot for the doctor to get a good look at these holes.  He met with us after the ultrasound and felt really confident these holes will heal on their own.  If by chance the medium sized hole doesn’t close on it’s own, he explained a surgery that we could do where they go through his groin and put a device like a plug in the hole.  We’re really praying these two holes will heal by themselves, it would be so wonderful to not have to deal with any sort of heart surgery.  Paxon will probably be put on some heart medication while we wait for the holes to close.  He mentioned that babies with holes in their hearts tend to have a harder time gaining weight because their hearts are working overtime and they are burning more calories…all I could think about was that he also has cf, and this is a common struggle.  He also talked about a side effect of this medication being that it can cause there to be extra fluid in his lungs…again, cf.  So many things going on for one little boy…but you know what, he’s sure proven himself to be a warrior already!  He’s going to blow some doctors minds, I can just feel it!

I was going through the video camera and came across a few videos I wanted Asher to have for keeps.

Just a typical game of beeshing bad guys with Daddy…

Micah, Mason, and Asher enjoying something all kids love…

And, unless you’re a grandma I would avoid this video because it’s long :). But, here’s Asher eating up all the birthday attention and gifts!