Asher's Story
Heart
First of all, my friend Leah made this, and I’m in love with it 
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Jeremy and I went in this morning for another ultrasound. This was the first time we had been in since we got the results about Paxon’s deletion of chromosome 4. It was interesting to witness the change in composure of the doctors and ultrasound techs – definitely more of a serious, somber look on their face when they talked to us. And of course we had to again clarify that we want to continue with the pregnancy. I guess for legal reasons they have to make sure, but it’s getting all a bit annoying being asked the same question over and over again. It’s not an option. Yes, we want our boy. Period. Could we move on now please.
The ultrasound tech and doctor looked at Paxon’s heart for almost 2 hours. There were two concerns they were mainly looking for, but Paxon busted these odds and there doesn’t seem to be concern with those issues. The doctor said that basically she doesn’t see anything glaringly wrong with his heart, but that she wants us to get a second opinion. I like second opinions, mostly because it means we get to see our boy for another couple of hours. Jeremy and I feel so much more in love with Paxon watching him wiggle around in my belly. He was sucking on his toes and his fingers, and he got the hiccups which was so adorable to see. We just love him.
We got a little more information about what’s going on, but really big emphasis on little. There’s just isn’t a lot out there. I guess most babies don’t make it to birth either because of abortions or they are just not strong enough. The nice stats sheet that they gave us explaining characteristics that children experience from this deletion was taken from a pole of a whopping 19 children. I guess it’s just that rare, which again is not a big surprise to Jeremy and I, we’re realizing that’s just how we do things.
The information isn’t complete to us, and therefore not that helpful. It says that 9 out of the 19 babies didn’t make it to 2 years. But that’s it, just a number, we don’t know anything else about these kids like whether they had more severe heart problems. Basically, all in all, we’re getting the feeling that no one really knows. And, no one may know until we see our boy.
So, tomorrow we’re going in to meet with our genetic counselor to talk more specifically about things, but again, we’re not really sure how many certainties he can give us. And, in 4 weeks when Paxon’s heart is more fully developed we’ll go back in to meet with another Neonatal so and so, and a Neonatal so and so surgeon…sigh…all the details are getting fuzzy. BUT, I think all in all we left there a little encouraged. They didn’t see anything wrong right now, we’re going to celebrate this fact.
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Asher is working on dressing himself, ha! I laid out some clothes, left the room, and came back to this ensemble. I asked him if I could take a picture and he gave me this model, hip kicked out pose that cracked me up!
We’re also so happy to welcome more family to AZ! Asher just inherited 4 more cousins, and buddies. We’re so excited to enjoy life with more family here!
Results.
We got the results about our baby Paxon on Friday. All week long we’ve been struggling with wanting to know what’s going on with our baby, but not wanting to know for fear of what might come. Now that we know, I wish someone could make it all go away because our hearts are breaking for our sweet Paxon. Unfortunately, this is going to be yet another emotional, written through tears, post…but so many people have been so faithful to pray for Paxon and our family, and we felt like you should know what we know.
I don’t think there is any flowery way to say what we’ve found out, except to tell you exactly what our genetic counselor relayed to us. Paxon has a deletion on chromosome 4, which our counselor said is unfortunately a big one. He said that babies with this deletion can have short stature, heart problems, severe to profound mental retardation, and usually die before they are 6 months old. It just kills me to even type that out. I was in shock when he threw this news at me, I forgot to ask him if Paxon also has cystic fibrosis…but I’m not sure that even matters right now. He said that he’s seen a few cases where the children have lived until they were 1 or 2 years, but most of these babies don’t make it that far. I’m pretty convinced that thinking about planning your child’s funeral is the worst feeling ever imagined.
We will see the doctors again this week and we have a ton of questions about how the rest of the pregnancy with go, delivery, surgeries, will he be strong enough for surgeries, will we be able to bring him home…We’ll also be having another ultrasound so they can look more closely at his heart. So, we should have more information this week, which may or may not be a good thing.
One thing we do know, we’re not giving up on our boy. We’re going to fight like hell for him and we’re going to squeeze and love him for as many days the Lord allows us to have with him. Please don’t stop praying for our baby!
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Jeremy was unfortunately gone and unreachable these past few days, we had no idea we would be getting the results so soon. My parents had already planned to fly in this weekend to spend time with Asher and me, and I’m so thankful they were here. There hasn’t been a lot of fun going around this house lately, so Asher having his Grandma and Grandpa to build towers and “beesh” bad guys with was such a blessing. We did take Asher for his first round of bowling while they were here, and of course he loved it. Lots of spins and jumping and his favorite “I did it!” phrase. Thank you so much, Dad and Mom, for all the groceries, mowing our grass, and loving Asher and me. I’m so thankful you were here with us this weekend!
Waiting
Sigh…we’re just waiting over here. We were supposed to get the FISH test results (the trisomys) back on Tuesday. After leaving a couple of messages on Tuesday and hearing nothing back, I called Wednesday morning and was able to talk with our Genetic Counselor. Here’s what he said when I asked him for the results, “Um…those tests never got ordered.” Wait. Excuse me. What?! He said there must have been a miscommunication between himself and the nurses and the test never got ordered, so we’ll have to wait until next week when we get all of the results at once. Sigh…this waiting to find out what the rest of our lives are going to look like is all too much for me…
On a happy note. It was Asher’s best bud’s birthday yesterday, and we all went to this really fun playland area to celebrate him ringing in the big 3! I love the picture of Asher and Carter, they’re such gangstas, ha!
View from My Window
I looked outside today and this is what I saw. Oh how the Lord knows how much we need Asher now and all his joy…
So Much Uncertainty
So once again our worlds have been turned upside down. I’ll warn you, this post will probably be pretty raw with emotion, will probably contain some rambling, and will definitely be written through tears so forgive the typos. Let me begin by saying that we found out we’re having another little boy. We are so thrilled to have another son, and for Asher to have a buddy for life. His name is Paxon Ray, and we love him so much already.
We went in yesterday for our 20 week ultrasound. Again we were so excited, and even brought Asher (proudly sporting his Greatest Big Brother shirt) with so that we could all find out if we were going to have a baby girl or boy join our family. It didn’t take long for the ultrasound tech to inform us that we were having another boy. That’s when the tears started, and unfortunately they haven’t stopped much since then. I could tell something was going on because the lady was taking her sweet time looking over things, until she very delicately (not at all!) told us that our baby has a cleft lip. Again lots of tears. Jeremy and I looked at each other with this, “is she kidding us!” look. All we’ve been praying about and focused on was this baby not having Cystic Fibrosis, I didn’t even think to pray about cleft lips or really anything else for that matter. We obviously had a million questions and concerns, and she really wasn’t into explaining things much, and certainly didn’t have a sensitive bone in her body. She left and said she was going to send a doctor in. We’re crushed at this point because all we are thinking about is all the horrible images you see of people with cleft lips, and it’s devastating to think about your baby looking like that.
The doctor came in and thankfully he was really nice and didn’t make me feel bad for all my sobbing while he was trying to get another look at Paxon. Things were quiet for way too long and again I kept looking at Jeremy, and we knew the cleft lip was not the only thing that was wrong with our baby. The doctor then told us and showed us on the screen that Paxon’s right femur bone is bowing, and his right hand is stuck in one position – his middle three fingers are bent and his pinkie and thumb stick straight out. At this point we’re crushed and cannot believe the things we’re hearing. I felt so bad that Asher was there for all of it. He kept coming up to me grabbing my arm saying, “Hold you, mommy, otay, otay, Mommy.” It was so sweet. But he was also chucking toys across the room and literally doing laps in the very tiny room full of equipment. He knew something was wrong and he did know how to handle it. I wish he wouldn’t have been there to see everything, I guess we were just thinking it was going to be a quick celebration.
The doctor basically told us he wasn’t sure what was going on. The cleft palette would be one issue to deal with all by itself, but because it’s coupled with these other issues with his hand and femur bone that we were probably looking at a chromosome syndrome and mentioned the trisomys – these were our worst fear. They usually result in miscarriage, still born, or early death. So the next step for us was an amnio to figure out what kinds, if any, chromosomes we’re dealing with. If Asher hadn’t been with us they would have done an amnio right there, but instead decided to send us home and we had an appointment with a genetic counselor and the amnio today.
Thankfully our friends, Dave and Krista, took Asher for the rest of the night because he needed some fun and we needed to process. Last night and this morning have been a couple of the worst days…right up there with the day we found out Asher has Cystic Fibrosis. But, this feels worse. We don’t know what’s wrong with our little guy and it’s really hard to figure out how to cope and deal and fight when we don’t know what we’re faced with. I woke up this morning and wasn’t up long before it dawned on me that this wasn’t a dream, and I crumbled. We feel like our hands are so full with CF, how are we going to be able to care for another child with special needs, and are we even going to get to meet our little boy.
We felt a little encouraged after our meeting with our genetic counselor and another doctor today. Our genetic counselor told us that after we left yesterday practically all the doctors in the office were looking over Paxon and trying to figure out what’s going on. They were tossing around a few ideas (scary ones) but wanted to get another look at him. Thankfully we had done the early screening tests too so the doctor and the genetic counselor had some more information to go off of. His results, and the doctor getting another good look at Paxon pretty much said our chances of dealing with any of the trisomys would be highly unlikely. Jeremy and I honestly kind of feel immune to statements and percentiles like this since we have 1 out of only 30,000 people in the US with CF. We just live in the highly unlikely. But the doctor looking at Paxon kept saying some stuff that was pretty positive to us. He said his head looks good, his spine looks good, he has 12 ribs on both sides (this was huge and eliminated the scary other options the doctors were talking about), the location of his ears look good, and his basic bone structure also looks good. This is all encouraging.
What doesn’t look good is that he definitely has a cleft lip and palette on the right side. The doctor said that it’s all the way up and all the way back which was again crushing to hear. His hand was in the same position as yesterday with his clenched middle three fingers. The hand was the thing I was looking for right away on the ultrasound because I felt like maybe if that was ok we were just dealing with a cleft palette/lip. We saw his clenched hand and my heart dropped again. The doctor said that this means his hand has formed abnormally. He said that we may not know what his hand will look like until after he’s born. The options are either that it’s webbed (we’re hoping this is the case), or that he’s missing the bones in the top parts of his three fingers which is more serious and harder to fix. We just may not know about this until we see him. His femur is slightly bowed, and slightly shorter. I like the word slightly. It seems like hardly at all to me, but we again may not fully understand this and the ramifications until after he’s born, or after we figure out what’s going on with him. We should have our test results back from the amnio in 10-14 days. I was hoping for more like 10-14 hours, days seems a bit agonizing to me right now. On a side note, that amnio sucked. The thick German lady who did it told me it would be just like drawing blood, um…yeah…if that’s the case then she did it wrong. I got super hot afterwards and thought I was going to faint, and now I’m having really sharp pains and cramping. I know everything is fine, the procedure just sucked and it definitely wasn’t like a little blood needle. I guess they’re just built stronger in Germany.
So I’m not sure how well I explained everything. We’re just feeling a bit numb, heartbroken, and overwhelmed right now. The hardest part is not knowing what we’re dealing with.
We have a bunch of prayer requests for our little Paxon, if you think of it would you please pray for him and ask God to move some mountains…
-That we would miraculously see his little right hand move when we go in for another ultrasound in two weeks. Or at least that they would get a better look at the bones in his hand. Or that it’s webbed. This is also pretty fixable, but if he’s missing bones that’s a whole different issue.
-We’re really fearful about Paxon being mentally handicapped, please pray that his brain would be functioning properly
-Although it would mean that we still don’t know what’s wrong with Paxon, we’re praying nothing would come back in the chromosome tests
-We still don’t know whether or not Paxon has Cystic Fibrosis on top of all of this other stuff. We’ll find that out with the other chromosome results in 10-14 days. Please pray he also doesn’t have to have these struggles.
-That God would just give Jeremy and I the strength to walk down this path. We love each other so much and just keep clinging to one another and that won’t change, but just thinking about taking on a new syndrome or disability or whatever we’re dealing with just makes our whole bodies hurt
-That God would save little Paxon’s soul. As long as his eternity is in heaven with his Father, all this stuff really doesn’t matter in the end
Thank you so much for your love!
Fire Station Tour
What better way to tour a fire station then with a bunch of friends! Asher wanted to see the fire station so we setup a tour and invited a bunch of friends. It was such a great morning and tour! The firemen were so nice and showed us their kitchen/conference area, gym, sleeping quarters, the pole and slide they go down when there is an emergency, their uniforms, and of course the fire trucks. The guys didn’t seem overwhelmed with all the kids, and were fine with letting them climb all over their trucks. They were so nice, and even gave the kids junior firemen hats after the tour.
On a side note, I just love getting a bunch of kids together and trying to get a group shot, you never know what you’re going to get! Some don’t want their picture taken, some can’t stand still, and some just stand their and pose beautifully, it’s hilarious! And watching all the kids either proudly display their fireman hat or frantically rip it off their heads as quickly as possible just makes me laugh. It’s so fun getting a group of kids together and watching their little personalities come out! Thanks friends for joining us and making it a fun morning and tour! Thanks Kristina for making popcorn for the kids, and Krista for bringing juice boxes!!! What a great way to end the tour!
Hallelujah + History
So, big news! Asher has cultured NEGATIVE for Pseudomonas for the last three consecutive cultures now, which means we’re on a break from Tobi!!! HALLELUJAH!!! I know I’ve said it before, we are so thankful that we have Tobi to fight this relentless lung infection, but we also equally hate the Tobi rounds. They add an additional 45 minutes a day to Asher’s treatment time, he usually gets a cold, and he doesn’t eat or sleep as well. For the last 1.5 years we have been on the 28 days on 28 days off cycle, and now we have a break and can breathe. We’re not sure how long the break will last, and we’ll be going in every month or so for cultures to make sure we catch this infection right away when it flares up again, but for now we are celebrating big time!!!
I wanted to do something fun with Asher to celebrate, so we went to the AZ Museum of Natural History – it was recommended by my friend, Meagan. And, I’m pretty sure I just made Asher’s year! He was so flippin’ excited the entire two hours we were there, it was hysterical! He is really into dinosaurs now, and completely lost his mind when we walked in and they had a couple of huge dinosaurs in the lobby! They have a lot of fun hands-on things for kids to do there, a lot of different exhibits you can walk through, and the people that work there are so exceptionally nice! It was such a fun morning, and a perfect way to celebrate the Tobi break. Couple highlights…
- Asher was making everyone there smile and laugh at his excitement for absolutely everything. The employees kept wanting to show him how to make things work, and to tell him about the dinosaurs because he was enjoying everything so much. I just love how excited he is about life.
- They have a courtyard out back where you can pan for gold. Of course we had to try it for a bit, but after awhile I said, “come on Asher let’s go look at something else this is kinda lame.” He said, “yeah, kinda lame.” and threw down his pan. Woopsies, guess I need to work on my positive spins, ha!
- No pee pee accidents while we were there. This is huge.
- He kept calling all the Indian statues “knights”. “Whoa, look at that knight, Mommy!”
- When we walked into this big room full of dinosaur skeletons he ran up to one and said, “Triceratops!” in his 2 year old voice. I couldn’t believe it, he was right!
- Every 20 mins or so they have a big thunderstorm that goes off with lightning and thunder, and they have a 3 story waterfall that starts rushing down the mountain. For some reason this scared Asher and whenever he would hear the thunder and water starting he would grab me and want me to hold him…I know it’s terrible, but I may have walked past it a few times to get some snuggles from my boy .
Strong-Willed Kids
Jeremy and I noticed our little Asher was a strong-willed child pretty early on. I’m not talking about an occasional “no” when we ask him to do something, or ripping a toy out of our hands because he wants it, I’m talking about a very intense fire and drive that emanates from him in everything he does. It’s amazing. It’s incredibly exhausting to parent, but Jeremy and I have always said that God has built him with this character to impact the cf community, and fight this disease full force.
I get these parenting tip emails a couple of times a week, and this one was entitled, “Strong-Willed Kids”. I had to open it immediately, and I was amazed at how much I could personally identify with this, and how much this is spot on about Asher. We’re so thankful God has given us a strong-willed Asher, and we pray for His wisdom in showing us how to cultivate and limit this trait all at the same time.
I just had to include the email on his blog so that we can one day look back at this and know that we saw this all unfolding right from the beginning…
“Children who make decisions with intensity tend to be labeled “strong-willed.” At the end of the day, their parents feel as if they’ve been engaged in hand-to-hand combat—and that the child often wins at the parent’s expense! Most parents consider a strong will a negative personality trait because it often creates resistance and frustration in family life. Yet, in reality, it’s the strong-willed kids who are often better equipped to succeed, be creative, and face adversity.
Children with strong wills have the potential to become the next generation of leaders. They have their own ideas and plans. They know what they want. They’re persistent, confident, passionate, and determined to succeed at whatever they choose to do.
Leaders have an agenda, look for ways to incorporate others into their plans, and have a high need for control in life. Balanced with graciousness, leaders become a treasure because they make things happen, create organization out of chaos, and motivate people to action.
Unfortunately, it’s hard to raise a leader. These kids tend to have their own ways of doing things and like to tell other people (including their parents) what to do. A strong will keeps a child moving in a certain direction in spite of obstacles. Often these children need bigger barriers or tighter limits to teach them that those boundaries are firm.
Don’t be discouraged by the effort it takes to teach a strong-willed child which limits not to push. The strong-willed child accomplishes things in life, because the roadblocks that might hold others back are no match for this kid’s determination. Your job is to help him know the difference between obstacles to overcome and limits to live within.
A strong will can be an asset… as long as the heart is in the right place.”
Cats Gone, Mouse Plays
Asher has had some super fun play dates lately! Here are a few snaps Krista took from the boys’ mini-slumber party. I just love seeing pictures of Asher when we’re not around. I’m always curious how he acts, if he remembers his manners, if he’s a good listener, you know all the reasons why Asher probably loves it when he can get out and spread his wings . Krista said the boys had a great time, which really wasn’t a surprise, they always do! Krista sang songs for the boys upon lots of requests, the boys had bath time together which I think is adorable, Asher gawked over baby Hannah (he loves her!), and I guess Asher made some yummy coffee for everyone . Thanks so much Dave, Krista, Chase, Carter and Baby Hannah for playing with our boy and taking such great care of him!
Next Asher was on to Ms. Lorraine’s, Mr. Jim’s and Ms. Whitney’s, and holy cow did they pull out all the stops! Asher’s day started with coffee and donuts, playing with new toys (Lorraine said he would tuck Grandma and Grandpa Olimb into bed and give them kisses), played with their dog Lucky, he rolled right through his nap because no fun can be had when you’re napping, went to Peter Piper’s pizza for lunch and games, and ended with looking for some glasses at Costco for Ms. Whitney. This little man traveled the city, while Daddy and Mommy got to have a day together…and Mommy smoked Daddy in skee ball (sorry, honey ). Thank you so much Ms. Lorraine, Mr. Jim, and Ms. Whitney for taking Asher to new places and giving him new experiences. He’s still talking about it!
Family Time
Krista and I took the boys to this little ma and pa place called Family Time. We weren’t quite sure how it was going to go, but all the boys needed to see was the lava slide, and that pretty much entertained them for about 2 hours. They’re easy to please . I had to post a pic of Krista and I to prove that we’re pretty adventurous mommy’s, because it was not an easy feat getting to the top of the lava slide and the slide itself was actually kind of steep, but we’ll do just about anything for some fun with our boys. Plus, if you’ll notice, Asher needed a little guidance on how to actually go down the slide! You can imagine the sound that comes from a bare belly going down a plastic slide, something like, “eert eert eert.” His first couple of times down were hysterical! Then the boys did some finger painting, and I just love the picture of Carter and Asher with their little tongues out! Serious concentration!
We’ve been getting a few monsoons here lately, not many that we’ve been able to enjoy, but last week a storm came and dropped the temperature about 20 degrees, which made for a beautiful evening. Asher and Jeremy were able to play baseball in the backyard, and it was so fun watching Asher whack some balls Jeremy pitched to him. Jeremy started working on pitching balls to Asher right as Summer was starting to hit, and it was so fun to see how much better he is now after a couple of months of getting big and his little weekly sports class he takes. This kid can seriously cream it!
One day last week Asher woke up from his nap to pouring rain. He loves to run and dance in the rain, so of course we had to do that, along with some rainy beeshing. It was a great afternoon!
