More Progress with My Sweet Moon Face

It's been a week. More than really. 7 BUSINESS days--but who is counting? We were supposed to have our last bit of happy news by now. I do still believe it's coming...and I believe it will be good... but once again, may have to do the investigating to get the answers.

To recap, we just need to hear that the pancreas test looks good... if that happens there may be some other non-asthma things to rule out, but the scariest scenario, Cystic Fibrosis will be taken off the table for now... hopefully forever!

The knowledge that he is a carrier (coupled with his symptoms), will leave us with some other decisions that we are currently praying about! Do we need to determine which of us passed on the gene? Would our families benefit from that knowledge at some point? At what point do we need to find out if the girls are carriers---or do we let them decide when the time is right? There really aren't RIGHT answers to these questions..... but that also means there aren't WRONG answers. So in the midst of what I hope are the final days of waiting, we discuss it and pray for guidance in the decisions.

A little more of my thoughts behind it.... because you KNOW there are many. IF Jason and I were both carriers as we spent the last few months fearing.... and IF we had known that prior to having children, what would that have done to us? Would we have our 3 sweet Ks today? Would a genetic counselor have given us the awful details of how life can be with CF...and more grimly what death can be with CF---and left us devastated-- and too fearful to start a family-- the traditional way at least?  It kind of leaves me in a weird frame of mind.

I can make an argument either way with myself....and believe it or not, haven't really reached out to my normal sounding boards seeking opinions---because they'll be just that...opinions....and as parents, it's our choice....and I know with prayer, we will make the right one for our family!

Kenton's current medication seems to be doing a lot of good for him. We've had a few oxygen dips into the low 90's, nothing as scary as what we were dealing with.... but each time, it's regulated with in a few hours... unlike the days on end before. This encourages me.... unfortunately, as it seems to be with ALL prescriptions.... it comes with side effects! :/ Currently he is gaining "puffy" weight.... the doctor said he was getting "moon face" to be exact--- but if this is moon face... I think it's about the cutest moon face I've ever seen! Don't you agree??

It can also cause mouth sores (thrush like?) and unfortunately he has that going on too. Does he complain? NOPE! He's just pretty darn amazing like that!

So we'll keep an eye on those conditions, and see if we need to change our course at some point.....but for now, we're headed in the right direction.

He has been feeling great....and honestly, been a real crack up lately. Today, when he came home from school, I asked him how his day was and his response was, "I made REALLY good choices. (giggle, giggle) That's because, I left my bad choices in my backpack."

He had us doing the whole laugh til you cry bit the other night. He really struggles with bedtime routines, and the transitioning to that time of night. And this one was particularly rough. He was very upset and having a pretty good "meltdown". His amazing OT has trained us on some soothing type of rubs or techniques, and one in particular on the hands to relieve tension. Jason is the one who brings him to OT 90% of the time, because I have Kreslee at dance.... so he knows the techniques better...or so KD let me know. I grabbed his hands and was trying to do a soothing rub in the middle of his hysterics, he instantly stopped crying--and in a fighting back tears voice said, "Really, Mom?? Let Daddy show you how to do it." We started laughing so hard that of course he did too....and the situation was diffused, despite my failed technique!  Those are the moments I want to remember forever.

A couple of other things to celebrate--which is such an understated word here! This momma is screamin' these new developments from the rooftop! He is starting to communicate with us more... engage us. Some of the early concerns that I referenced in one of my initial blogs that led us to the Autism diagnosis, were that he never drew us in to what he was doing. Praise was completely lost on him. Most children beam and turn it up a notch when they know they have an audience... he was completely un-phased by any attention. Neither Jason or I could recall ONE SINGLE "Look, Mom!" (or dad) to show us something he had made, seen, etc. While he can speak, make mostly appropriate sounds articulation wise, he struggles a great deal with communication--- and I've shed many a tear, just PRAYING for the day, that he'd hop in my car after school, and tell me a story about something that happened. Not answer a question...but have something in his sweet little mind, that he wanted to involve me in.

So a little over a week ago.... he was with me at his big sister's basketball game... and was sitting 2 chairs down from me, playing a game on his Nabi. He came over to me and said, "Mom, can I sit on your lap? I want you to watch me play this game!" After the puddle I instantly became was mopped up, I let him climb up in my lap... and for quite a bit, he sat there and played. Every so often, he'd glance back to make sure I was watching him. I know this sounds sooooo  "normal" or minor, but for me...and HIM... it was HUGE. My mom was sitting next to me, and we just both kind of sat there stunned, but oh so happy!

Then today REALLY got me! As I was getting him ready for school... for the FIRST TIME EVER.... he said, "Mom, I want to tell you what happened yesterday at school."  He proceeded to tell me a story about some of his friends in line, and although I didn't quite catch it all, it was something that he really thought was funny. He didn't bust it out on the car ride home immediately following the day.... but in his own time, he shared it with me! Something is connecting between that little brain and mouth of his!!  And I have no doubt that may have been the FIRST story from my boy...but it won't be the last!

There aren't really words that I can use to even convey just how much that moment meant. Something I've waited for, for so long... and PRAYED for... being answered...at honestly the most perfect of times! I've been wanting to be able to just flip a switch and get meaningful conversation from my son... but I wasn't the one that could do it.

We sang the most beautiful song at church on Sunday. Every single word of this song can not be more true of our situation. I feel like it was written for ME....and it was a part of worship for ME! (How vain, really?---but surely you've been there before?) I was so moved by it, I could barely sing it. So I'm sharing it with you.

I beg of you to take a few minutes and listen. Believe it for you---not just me in my situation! He's there. He's FAITHFUL! We NEVER walk alone. I'm having to learn more than ever that he is in control....and the LESS control I have over circumstances---however hard it may be, allows him to be MORE in control....it allows HIM to get the glory! 

As hard as it has been---to hand over the "control" of my son, and as humbling as it is to know, that sometimes WE can't fix it all... I know his Maker has big, HUGE things in store for him....and this momma is going to continue to learn how to enjoy the view from the backseat for a change!

Listen....it's beautiful!

Pesky Moms, Poop, and Proof of Prayer

(Am I getting better or worse at this whole title thing? Points for the alliteration maybe? ;) )

What a day today has been! I think the entire KU basketball game could have been deemed ineligible for the remainder of the season and my grin wasn't going anywhere! As you've probably seen by now, we got some REALLY good news! The ONLY good test result news we've had since... well... JULY!!!! Every other test our cutie pie has been involved in, whether for Autism, or this Asthma/CF ordeal, has been not great news. Each test made it harder and harder to keep believing....and every arrow was pointing in the same WRONG direction! Until today... the most important arrow of all arrows yet... pointed the RIGHT way! Only ONE mutation.... a CARRIER of the disease, but more than likely nothing more!

So it wasn't just amazing timing that we got the news today. That came at the hands of an oh-so-polite-but-pesky-mother! As I was falling asleep last night, I decided St. Francis would be getting a call from me in the morning to see if they would give me any type of timeline on the genetic sequencing. Children's Mercy (CM) told me, Mayo would let St. Francis (SF) know, because that is where the test was run, then they would let Children's Mercy know. That was relying on too many different hands to make sure the info got where it was headed, so I thought maybe I could speed things along. So I called SF, and the nice lab worker said, "Oh sweetheart, that's been done....and faxed to Children's Mercy." I thought surely they were confused and just saw the FIRST test results in his file, so I re-explained.... and again she said... "I am looking at the results for both tests right now, it is completed. I will re-fax it right now." 

I hung up the phone ELATED! Yes, you read that right. Elated, not ready to puke with nerves like yesterday. When I was brushing my teeth this morning, something told me everything was OK! In my heart, for the first time since this all started, I truly let myself believe that our son was going to be just fine. Yes, I always clung to the hope, and stayed positive--but in my heart and mind, the chances that it ended poorly were at least equal to the chance that it would end happily.....until today. I had an overwhelming belief that it was going to be HAPPY NEWS headed our way. It was as if God was waiting for me to truly BELIEVE that he could and would spare this road for my son before unveiling his plan! Why do we sell him short?

There was a bit of a cat and mouse chase, off and on all morning (CM denying having the results, SF insisting it had been faxed and re-faxed, verifying correct numbers, etc). Then finally I got to talk to the "head" gal at the SF lab. She said, I'm not sure that CM knows how to read this particular lab.. and I think I know why they think it's the results from the first!!! (my over-analyzing worked to my advantage for a change.... I KNEW then, she was basically saying, the same mutation was found, no additional, so CM THINKS they are seeing the original testing, when in reality, it's the second!) She was so wonderful, said, I'd waited long enough, she would personally call and explain it to CM, and ONE of them would call me in 10 minutes!!!

About 5 minutes later, we got the happy news!! CM called and said they did not find another mutation! They again found the first (R352Q) and that was it!!  For the first time, she said we are getting close to ruling it out! Yay!! She showed her hand!!! I rounded the corner to a pale looking husband--- guess we traded places today---and he could tell without me saying a word that he was seeing happy tears!!! And we hugged, and we laughed, and we danced a little.... and contemplated driving to his school to give him a BIG OL' HUG.... but figured we could hold off an hour. The girls wanted to know why we were being so silly, and we told them that we got really happy news about Kenton....and they didn't ask anything else, just joined the celebration! We poured some Super Fruit Global Blend and Kambree snapped a pic of our toast!

 

So we are very close... his lung tests came back with a few mild concerns, but nothing that couldn't be found in severe asthma patients...or other respiratory conditions, so standing alone with no mutation, wouldn't necessarily lead to CF. So it's just the pancreas results we are waiting for, and she said yesterday about a week for that.

So you may be wondering, if it takes TWO mutations to have CF...and Mayo said he only has one, then why is it even still a possibility. CF is one of the most researched diseases, and they are still learning of new mutations... the number just keeps growing. So, given the rest of his symptoms and scores on other tests... a fuzzy lung test and poor pancreatic test could still leave us treating it as if it's CF... and assuming another mutation may be present that is not currently researched or known.

In my heart of hearts... I think we are ok. Will still be praying with all my might, and asking you all to join me, but I think we are getting somewhere.

You know what else I think? I think we watched two miracles before our eyes....a direct result to prayer. I'm still in utter shock at how many of YOU were lifting him and us up. Social media can be a pretty beautiful thing, ya know?

Miracle 1:
First, if you are eating, now would be a good time to stop! We're going to talk about the deuces! ;) Kenton has had digestion issues since birth.... very FREQUENT, very YELLOW, and very LOOSE. TMI, perhaps... but I want you to know the specifics, so you'll see why I believe some true healing has/is taking place. It wasn't until the Autism came in to play (the research discusses the connection with Autism and digestive issues) that I stopped to consider that this isn't normal, and perhaps even concerning. Maybe I should be embarrassed to admit my carelessness, but I really just thought it was his poop. Back to the miracle.....the last 3-4 days before we went to CM, his poop changed. I wouldn't put it in the normal category in regards to color... but not yellow, and very close to brown... the consistency (am I really typing this?) and the frequency, had completely improved!  I'd stare at the toilet in shock.... really not believing my eyes! Coincidence? I don't think so!

Miracle 2:
 I mentioned yesterday that his lung function had improved (different than the x-rays referenced above---now we are talking about lung strength, air movement, etc.)... but probably could have elaborated! He went from FAILING to NORMAL! She read his scores in 3 categories, and although these are not exact, one of the categories jumped about 30 points!! The other two from 70's to 90's. This is huge really. The doctor used the term "remarkable improvement" if I recall! I told her yesterday between the poop and lungs, I felt like I was watching a miracle unfold before my eyes... she smiled politely and nodded. No clue where her faith is, but I know where mine is! Yes, Kenton was on a new asthma action plan, with new VERY costly prescriptions, BUT I'm pretty sure the GREAT PHYSICIAN had a little something to do with it!

So that is where we are at.... enjoying life in the cautiously optimistic world! If the pancreas results are good, we go back to CM in March to continue monitoring his progress with the lung issues!

Before I cut this off, I have to say one other huge celebration from today. Since the middle of December, my beloved grandmother has been dealing with major health issues and in and out of the hospital. Days before it hit, she was still driving, working, babysitting, and living the most FULL life of anyone I've ever known in their 80's. Then she got zapped... it's been soooo very hard on my mother, and all of us to see her like this! About a week ago, she moved from the hospital to a brand new assisted living facility in Derby for physical therapy, rehabilitation, etc. Today, we visited her, and she looked AMAZING! For the first time in over a month, she sounded like herself and looked so improved! I really couldn't get over her improvement in just the few days since I'd seen her! Please pray for her... a full recovery!

Thanks as always for taking part in The Whole White World!

A Play by Play

In one way one way or another, I've been counting down to this day since before Thanksgiving. I know the doctor said this diagnosis is quite a process, but I still was (foolishly) optimistic, thinking today would hold some answers for us. When CF became a bigger scare, not just a rule out, the doctor said her goal was to have answers by this appointment, so I was just holding on to that.  I told Jason on the drive down that my biggest fear... well SECOND biggest fear... was that we would be driving home with the same knowledge we had on the drive down. That is more or less what happened...but I will reflect a little more.

For starters... we arrived at 12:30, PLENTY early, (or so we thought) for a 2:00 appointment. Even better--we successfully navigated a different route in downtown KC lunch traffic, without so much as a bicker! (Please tell me we aren't the only married couple that competes in Snip-Fests when directions and navigation are involved?) Either which way... we fist bumped and pumped, and headed in to the hospital to enjoy a leisurely lunch in their cafeteria. Kenton said the sweetest prayer before we ate, then we stalled as long as possible...and headed up about 1:40.

So back to the (or so we thought). I go check in and the receptionist told me our appointment was ACTUALLY at 1:00, and since we were more than 30 minutes late, it was cancelled. My jaw dropped and heart sunk... and I muttered... "We came from Wichita."  She said, well I'll talk to a nurse and see if we can make an exception. And I muttered again..."We've been killing time since 12:30 in the cafeteria....and were told 2:00." I still wasn't getting a look of sympathy, BUT she talked to the nurse and they agreed to see us... so we were luckily able to avoid any "Mom Goes Psycho in Pediatric Pulmonary Clinic" headlines. Whew!  We had to wait for the "true" 2:00 appointment to arrive and be seen, before they would squeeze us in. So we waited... what's new?

Finally our turn arrived... they did all the normal stat stuff...and took us back to a room. Where again...we WAITED. It was at least 45 minutes, and definitely the worst 45 minutes of this whole ordeal for me. I only can relate it to the waiting for the doctor to find the heartbeat of my subsequent babies after my previous miscarriages... except honestly... worse. I'm quite certain I was pale, and not sure I could have stood or walked at that point. I was disappointed in myself for not remaining more calm... and full of faith and belief..... I let major fear creep in. My husband, of course, remained calm... we make a good team, I tell ya. He is strong, I am weak. ;) Some time during that wait, a respiratory therapist snagged Kenton to do a repeat lung function test... then delivered him back.... and FINALLY we heard a sweet little knock on the door.

Sweet enough that I even analyzed that... (sweet, delicate knock =  doctor is nervous, trying to ease in?--pathetic, I know). The doctor sits down, and starts to small talk more or less. How's Kenton been since we've seen him? He's gained a little weight, etc. Then I screamed... "Ummmm, HELLO????? Do you know???"  Ok, we all know that didn't happen. Finally, she said, that she had not gotten the results of the genetic sequencing back, and had no idea when she would. Although I could feel the color came back in my face---and I was relieved that no bad news was headed our way today... I was so very disappointed for the waiting to continue. She reminded us again what a tedious process it is, and asked for the "P" word again.

The "P" word she was referring to, was obviously "Patience". I had a different "P" word--phrase really, going through mine... and that was "Poker Face". She has a GOOD one. She gives not one indication to lead us to believe one way or the other. She just states the facts. Which I suppose is a good trait in a doctor... but I kind of wanted to say, now talk to me "mom to mom!" How do you think this ends?  Grr.

We did get information on the specific mutation that he does for sure have... and got some encouraging news on his repeated lung function test. It had DRASTICALLY improved. Moved from a "fail" score to normal range...which means the medication he is currently on, is working. It doesn't however, mean less (or more) chance for CF.... as some CF patients use the same medications... it just means that it's working. YAY!!! :) Answered prayers!  

So now we are waiting on 3 things:
1. Genetic Sequence results (we want there to be NO ADDITIONAL MUTATIONS found)
2. Lung X-Rays (we want them to look perfect with no signs of damage)
3. Pancreatic Testing Results (not sure what we want-- so we'll just say we want a good report)

IF all three of those things come back as I typed... I believe Cystic Fibrosis will be taken off the table---and the Whites are inviting you all for a big ol' party! ;) If one or more is questionable, we continue. She did say if CF is ruled out, there are some other pulmonary conditions we may need to rule out as well... but for now we are starting there and working backwards.

So that's the scoop on the appointment! Kenton is such a trooper... I think he'd go through about any amounts of poking and prodding if he knows he gets to see his cousins Abe, Aidan, and Avery afterwards--lucky for us, they live in KC! We enjoyed a nice dinner with them before heading home. He also beamed the whole drive there, because his cousin Dillon packed him a special travel bag with his favorite toys and snacks! Can I just TELL you how amazing our families are?

I never remember a time where I have felt so much love and support....and we consider ourselves so blessed. This sweet picture was circulating all over Facebook...along with links to this blog, and it truly warmed my heart to know so many people were rooting for my little man and care about our family.

Warmed my heart doesn't do it justice. It's just so very touching to know that there were people thinking of us and praying for us all day long. Every text, Facebook share, comment, or like.... was so very, very appreciated. Strangers praying. Lifelong friends and brand new friends... united in prayer. There really are no words to describe how incredible it was--- so I guess I'll just leave it as one huge, and oh-so-sincere....THANK YOU!

 

 

 

 

 

 



Not My Son!

On Tuesday, we head to Children's Mercy....I'm not sure what we will find out, or IF we will find out. I know they are running more tests, and I would think the genetic sequencing results would be in (it will have been 2 weeks), but that is really just speculation. The doctor gave us no real time frame on that part, just asked for our patience. As the day gets closer, I still have a lot of hope and strength, but I'd be lying to say I'm not starting to feel a little rattled, with kind of a sick pit in my stomach. Maybe a little edgy. (sorry, Babe!)

For the last several months, I've been staring at this sweet face while he sleeps....

 

...and praying, NOT MY SON! I've watched him laugh and play with his sisters, thanking God for all of my blessings, and in the back of my mind, been praying, PLEASE Lord, not my son!  I've had more days than not, that I truly believe, this is all going to boil down to one BIG scare...and it's going to be a scare that leaves us cherishing our miracles even more than we already do...and will leave us forever changed and looking for ways to help families who weren't as fortunate.  I've also had days where I think there are just too many signs saying yes, and that our lives are getting ready to be rocked.

 

This morning at church. God was speaking to me. He brought many mother's  to my mind, who have underwent similar helpless feelings---- and one mother in particular, that I know suffered terrible anguish. This mother watched her son be tortured in front of an angry mob, mocked by them, spit on by them, and ultimately watched as they nailed her son's hands and feet to a cross. While I can't even comprehend watching such cruelty to anyone, especially one of my sweet children, I have to imagine she was praying all the while, NOT MY SON! Please spare my son. I think as a mother, she would have traded places with him in a second if she could have. It is her son's death, that actually gives me a never-ending peace and true sense of HOPE in any situation, because her son's story, didn't end there! Three days later he conquered death, and arose from the dead. Because of his sacrifice, when we believe this to be true, our lives don't stop when our earthly lives end either.

 

Jesus said to her, “I am the resurrection and the life. He who believes in me will live, even though he dies;  (John 11:25)

 

He also said:

 

“I tell you the truth, whoever hears my word and believes him who sent me has eternal life and will not be condemned; he has crossed over from death to life."  (John 5:24)

 

and OF COURSE this one:

 

"For God so loved the world, that he gave his one and only son, that whoever believes in him, will not perish, but have everlasting life." John 3:16

 

 

There are no guarantees for an "easy" life on this Earth...and none of us know what our earthly future holds. However, we do know there is a beautiful gift waiting for us when we leave (and we all will)... if we choose to accept it. This gift is a place where there are no tears, no hurting, no sickness, no sin. A true paradise beyond our imagination that we will live in for eternity.  When you have this knowledge and belief, then you ALWAYS have hope. You know there is ALWAYS a happy ending.

 

I don't know what the outcome of this situation will be, but I do believe it will go one of two ways.

 

We could very well get an "all clear"---and praise the Lord for his healing hand. There will be a lot of rejoicing, crying, and maybe even some shouting on my part... "Yay! NOT MY SON!!!"  (might have to brush up on my "Roger Rabbit" and "Running Man" moves for this celebration)

 

Or the next turn of events, may not be so happy. We could have to come face to face with our fears, accept the diagnosis, and continue praying for healing. Praying for a long, and good quality life for our son. Praying for a cure for this nasty and terminal disease---all the while fighting with everything we have to make sure Cystic Fibrosis, is NOT going to get MY SON!

 

 

Please continue to pray with us! We are so blessed by all of the kind words and encouragement. (and if you are reading this and do not know that your true HAPPY ENDING is ahead, PLEASE let me share more with you! deannaw78@gmail.com)

XOXO

 



People are Good

People are good--despite what 90% of the news would lead us to believe. (Totally made that percentage up, but it has to be at least that.)

If you follow the news, you quickly know more than you wish you did. I often struggle with whether or not I really want to be informed, or if much of what I read weighs too heavily on my heart and mind to make it worth being "in the know" about the things I think I should know. (you probably had to read that one a couple of times.) My sweet husband has developed quite the talent for censorship. He will turn the channel, close the computer screen, or take the paper out of my hands, if it's a story he knows will leave me with overwhelming empathy.

I've cried my way through so many blogs, internet stories, articles--truly heartbroken for complete strangers. Wishing there was some way I could help! And I KNOW I'm not alone in this. How do I know this?  Because I believe, people are good!

Today, I read an article about a young man, that found $40,000 in an envelope ($2,000 cash and a $38,000 cashiers check) intended for a down-payment on a house. What did he do with it? He gave it back! While I'm thrilled to read about some HAPPINESS in place of all the NASTINESS.... I think this is what the majority of humans would do. Some may argue with me.... call me naïve or foolishly optimistic.... but I'm going to guess every person that reads this blog, would have done EXACTLY what that man did... because people are good!

So the happy news didn't stop there for me today.

Backstory: Since we got Kenton's Autism diagnosis, I've joined various different on-line support groups. I've been overwhelmed (as mentioned above) about the stresses this can put on families, not the least of which is the financial stress. Just the testing alone can be quite pricey. (We have decent insurance and they asked us for $1000 on the spot--OUCH!) Then you move on to all the therapies, possible prescriptions, etc. Depending on the severity of the situation, many need various communication and safety equipment as well.

Every time we have paid a large bill, I thank the Lord for his provision... pray for his continued provision AND I ask myself (and usually my husband too) what the heck people do that can't afford all of these therapies. I'm talking about hard working parents, who have insurance that just doesn't go far enough.  I don't mean to sound as though it's been pocket change for us...far from it, but we're managing---and He is providing in many remarkable ways. (dropping an in-home business in my lap, that at the time, I didn't even know I wanted or would come to NEED roughly six months later.... and he preformed an "insurance miracle" (that I look forward to blogging about at some point)! I do truly believe both to be God's direct intervention in our lives.

All of that said, it's on both Jason's and my heart, to look for opportunities to lighten people's load when possible. We vow to be good stewards with the income that God blesses us with, and as we are able we look forward to opportunities in our future to eliminate some of the financial stress that accompanies a diagnosis like this for other families who walk down this same path. To help eliminate the heavy burden of "how are we going to afford to help our child" and allow them to focus their thoughts on "what can we do to help our child". It's a big dream of mine. A GOD-sized dream.

So knowing that back story, you'll see why this specific bit of news that I stumbled upon today in one of my support boards, led me to yet another blog... about how good I believe people to be--and has led me to happy tears!

There is a single mother on this board, who has been trying desperately to receive a grant or some funding to afford an iPad for her Autistic son, who is about Kenton's age, and is non-verbal. There are many helpful apps that actually help them communicate--and it's a great learning resource! When she came up empty with all the avenues she knew to go to, she decided to post on a buy/sell board to see if anyone happened to have a used iPad that she could possibly buy at an extreme discount and explained her situation---- and today, within 2 hours, a gentleman contacted her and met her with a BRAND NEW iPAD air for her sweetie pie---free of charge! He could of assumed the worst, that it was a lazy parent, trying to scheme a free iPad.... but instead he took her at her word...and I'm so glad he did!

I read her post over and over again, and could just hear her squealing with happiness. Her son's birthday is next week... and he will be receiving quite a lovely surprise---if she can hold off that long!

I don't know if that warms your heart, but it kind of set mine on fire---and left me reflecting on the fact that PEOPLE ARE GOOD!!! And good breeds good.... and amazing gestures and acts of kindness breed just that---and it made me happy---and ready to do and be GOOD!

Our Week

I'm happy to report that the peace I felt when I posted last week, has stuck around. I'm doing pretty darn good! Those pesky little letters, C and F, have only entered my mind a few times each day, rather than consuming my thoughts, AND even more amazing... they haven't been typed in a Google search bar ONCE. Really. Come check the history. It's true! ;)

Instead, my time has been spent...

watching this...

 

and of course this...

 

You know, all that PRODUCTIVE stuff!

 

I've even been lucky enough to get to spend some nights with concerts like this...

 

http://www.youtube.com/watch?v=_eNkZXNmvDo

 

Before you assume that her mother staged this.....I assure you this was her own doing. That whole hand thing she has going on.... is just pretty darn amusing (as are her facial expressions)! Need to work on some lyrics and proper vocal techniques... but plenty of potential, this biased momma thinks!

 

This week has also brought many a family wrestling match, board games, dance classes, basketball games and practice, time with family we don't get to see often enough, and just a whole bunch of wonderful!  (in the video, you may have noticed what this week hasn't brought....and that is the desire or time to take down all of our Christmas décor-- nice, huh?)

 

All three of our kiddos huge blessings in so many ways...miracles really. I tell them all the time that all I ever really wanted to be in life.... was THEIR MOMMY!!! They giggle.... but they have no idea how true it is.

 

So things have been surprisingly wonderful in The Whole White World over the last week. I'm not sure what it is about a possible life changing diagnosis, that leaves you hugging tighter, laughing harder, and just finding so much joy in each and every little thing. Just soaking in all the moments of life in the limbo stage---where there are fears, not realities...and trying to hold on to that hope that there is still a chance, this ends with an ALL CLEAR! 

 

We head to Children's Mercy on Tuesday---and do some pancreas and lung testing. I don't know if the genetic sequencing results from Mayo will be in by then or not, but I am hopeful that we will leave there knowing a little something more! Prayers for safety, answers, and continued peace and strength are so appreciated! 

 

Love you all, and thanks for following along with our little family!

 

 





The Update

Prayer is an amazing thing. We did get the call this morning....and though it wasn't exactly what I hoped to hear...it could have been worse. Kenton is a Cystic Fibrosis carrier at this point. They found one mutation during the first test. It requires two for a definitive diagnosis. So now, we proceed with genetic sequencing. (The first test only tested for a little over 100 of the genetic mutations.... there are nearly 2000---so now they keep looking, and we keep waiting). The call we wanted, was no mutations so far!! The call we didn't want would have been that they found 2 mutations. The call we got.... was just in between. Amazingly enough, the call came when my husband happened to be right by my side! He was getting ready to leave for work, but hadn't yet. Seems little.... but it wasn't. I needed him... he needed me!

So back to the prayer being an amazing thing. I'm a sap. Didn't use to be....but something about motherhood has led me to become that gal-- bawling during Hallmark commercials. Let's be honest.... Tide, Folgers, even a good CarMax commercial can do it. I've shed plenty of tears through this whole ordeal, no denying that... but today, after the call, not one has fallen.... they've gotten pretty darn close, but they haven't. That, I have no doubt, is a direct result of prayer. So many people are praying for my family at this point... praying for PEACE for us, regardless the outcome. And it's working... today I strangely feel that VERY peace that passes all understanding...and I am actually understanding the true definition of that phrase....one I'm not sure I'd ever stopped to think about before. It is passing my understanding truly, that I have a calm about me. I'm not keeping myself together...GOD is keeping me together. He will keep me strong when I don't think I have the strength.

God has taken care of SOO many other things on this journey and I look forward to sharing more sometime soon! Crazy things!!

Keep on praying with us!! I'm off to finish my whirlwind of a Tuesday (delighting in the distractions)... but knew many of you were wondering the outcome! 

XOXO

What the Label Gave Us....

(first things first, unfortunately, no update on the Cystic Fibrosis front... so my therapy today is just from a place of reflection on how far we've come on the Autism front---starts out like a downer---but I promise it has a happy ending)
------------------------------------------------------------------------------------------------------------------------

"Is something wrong with Kenton?" The bomb dropped by my very intuitive 6 year old. The question that made my heart stop. The question I was definitely not prepared for.

My honest answer to her many months ago, has now led to some of the sweetest moments between the two of them. It's got her rooting for him, just like a parent would--and it's led to awesome celebrations like yesterday at lunch when she said... "Wow, he is REALLY talking good today, isn't he?" It also has invoked the sweetest prayers. Like the other night, before dinner...

"...and dear God, please take away my brother's "as-tism". It is her coined phrase when she doesn't know if she is trying to say Autism or Asthma.... and for us, it falls in the too cute to correct category. And God knows EXACTLY what she is saying.

Some of you may be gasping that we would have let our daughter "in" on these struggles. I assure you it was no easy decision...and in that moment when she asked, I honestly wasn't prepared for the right answer...if there was such a thing. The reality is, she sees it. She knows him well. She knows ME well (lived inside me for 9 months, ha), and it is a part of her life too.

Her question came this past summer, when she entered my bathroom and basically busted me in a mommy-meltdown. We had just gotten home from a beautiful day spent at the park, and I had done all the "right" things. He got the 10 minute warning before the fun was to end... then the 5 minute warning....then the what's the LAST thing you want to do warning--and we discussed what we were moving on to next.... but none of that mattered. When it was time to head home, the most massive of all meltdowns occurred. There were plenty of families at the park that had a front row view, and though I refused to make eye contact with any of them, I'm quite certain they were appalled, and had a good bit of "If that were MY child..." going through their heads. It was the longest walk of my life. Probably 50 yards to the car.... my two daughter's walking obediently, and my son on my hip, repeatedly punching me in the head, kicking, and screaming.  It was a moment I will NEVER forget as long as I live.

(sidebar--- I know all kids throw fits. I have two other children that have had their fair share... this is different. WAY different.)

I kept it together until I got to the car. Then with my shades on and a cartoon to distract the kids (gotta love mini-vans), I let myself break down. The diagnosis was so new at that time---it's almost like the physical attack allowed me to release it. I wallowed. I let myself feel like a victim---after all, I was just physically assaulted. As we pulled in the drive way, I re-gathered my composure-ish long enough to unload the kids, and headed straight to my bathroom to try to pull it together and hide the remnants of the ugly cry that had been going on.

That's when my daughter came in. "Are you okay, Mommy? Is something wrong with Kenton?" I was a singer, not an actress... nothing I could have said at that point would have convinced her I was ok....so I took the honest approach. We got to have the sweetest conversation, that I will also remember for the rest of my life. I did tell her he was Autistic and I'm still not sure whether that was right or wrong to use "the word", but I'm giving myself a pass if it was wrong. Of course her steel trap mind hasn't forgotten it although we don't continue to use this word with the kids. I explained to her that some things will be harder for him. I tried to explain that his fits are different than hers. He isn't just trying to get his way---he is trying to find his way. He can't always explain his emotions like she can, and that we need to pray for him, and learn ways that we can help him. That was the gist anyway.

It was that day, later on (when my face stopped throbbing) that I was oh-so thankful that we had proceeded with the official testing, even though some would (or did) say "don't label your child"--and that was something that we struggled with for a bit. It wasn't about getting a label. Nothing that we learned from the doctor that diagnosed him, changed who he was one bit. He was perfect before, he is perfect now. We still maintained the expectations of him that we did prior to our knowledge. What did change is we became better parents to him! I thought about what my reaction may have been that day, if I'd never followed my instincts, and gotten to the bottom of the concerns I was having. I was so grateful for the knowledge.... because as hard as that day was knowing what was at play....not knowing would have made it far worse.

The label didn't take anything away from us (maybe knocked the wind out of us) but it did GIVE us the awareness of what we were dealing with....which has led us to find amazing resources, people, and strategies. Simply put, it helped us become the parents KD needed us to be.

I still wonder today if we would still be waiting for him to "out grow" things, that weren't going to go away with just age. Instead, we faced the music....and are now getting so much help. His progress in just the short 7 months that we have known, is amazing, really!

Don't believe me? Here's some proof! ;)

After the park incident, and many more unfortunate moments similar, Jason and I met with his doctor again. She trained me how to carry him properly, so that he wouldn't be able to go for the head (that's almost funny, right?) during these attacks. More importantly, she gave us techniques on dealing with the meltdowns...which, ironically, were techniques to basically NOT deal with them. She suggested we try completely ignoring the meltdown. After he was done being aggressive, hateful, etc... my inclination was to try to talk it over.... "We don't hurt, Mommy" type of discussions. She said no. Don't give it any attention. Just a "Glad to have you back!" and go on about your day. We left there thinking she was a little crazy....but you know what? She wasn't.... it worked like a charm!!  It has been literally MONTHS since he has been physically aggressive with me, or anyone for that matter.  Those painful battles are distant memories for us at this time. In fact, he is such a little love bug so much of the time... it's hard for me to even think of him being that way towards me.

That alone was worth the "diagnosis". But there's more.....

We got him set up with the most AMAZING Pediatric Occupational Therapist... and he is making HUGE strides there. She loves him so much, and the feeling is more than mutual. He talks about her all the time and is now asking to ride his bike (refused to ride it prior to).... and he is taking on a much stronger like for physical things. His hands are getting stronger. He's learning to grip a pencil...to WRITE HIS NAME. He has improved balance and coordination. Yesterday, at lunch... he asked Jason to teach him how to play football, and I think everyone at Olive Garden heard the giddy school boy yelping---- Jason, not Kenton....to be clear.

He is doing so well in Speech, that his therapist cut his time in HALF in December! This does make me nervous, because I see so much room for continued growth, but I'll still throw a tally in the progress column for it!

The "routines" we have put in place, have kept things so much more peaceful at home... but it's not about peace for Jason and I. The routines are what HE needs to feel safe. They are what HE needs to function. He needs to know what to expect. Something so simple to remedy has made his life easier... and why... because we now know how to help him.

I wish we would have known sooner.... but I'm so glad we know now. 

I did figure out how to add the "Follow My Blog" stuff on the right hand side if you are interested in following my crazy crew..... or if you know anyone struggling in these areas... please direct them to me! I am eager to "meet" other parents dealing with similar things... share ideas, frustrations, celebrations, etc. I'm sure there are great support communities... I just haven't found them.

Free Therapy

Do you ever have that feeling that you just have too much time on your hands? Maybe you are just dying for one more plate to spin? No? Hmmmm. Me either.

Perhaps you can relate to a racing mind in the wee hours of the night. The kind of sleepless night that has you solving ALL of the world's problems. Maybe you have a spouse that is an incredible listener, but you feel like his gift has been more of a punishment lately--and he's just too darn nice to tell you that your "gift of gab" is a bit painful at times. (I wonder if he's tried to tell me this, but I've been too busy talking to hear? Surely not. I'll ask him later. He'll be thrilled to chat about it for a bit.)

So when you take the zest for chatting, add the unfortunate spices life has thrown at us lately, and add a bit of overthinking and a dash of a love for writing....what do you get?? A blog!  Not a resolution to document our lives. Not a commitment to post "x" amount of times each week or month. Just a sounding board. A place I can gather my thoughts.... a method to spare the ears of those closest to me, and give another one of their senses a work out! As the blog tag line says... free therapy for me.

So now, I'll dwell on the unfortunate spices. They, after all, seem to be consuming things in The Whole White World lately. I've revealed bits and pieces of this situation the last few weeks via Facebook or texts, probably just enough to be annoying to the majority.... like the 'appetite wetter' posts where you just want to comment, "OUT WITH IT" or "KUDOS ON DANGLING THE CARROT". I haven't meant to be evasive.... I think I've just been enough of an emotional mess, that I was fearful I'd get medical expert opinions on what it could be, couldn't be, etc, if I gave too many specifics. It just felt safer to leave it as a request for prayer. I wholeheartedly believe in the power of prayer. Why not use social media (or a blog) to petition for it.

Ok. That said... here is the situation... (the condensed version, believe it or not, though I will back up a smidge).

My 4 year old sweetie pie, KD, had a very rough 2013. After a couple years of mother's intuition- insisting that something wasn't right, this squeaky wheel was finally heard....and within 2 weeks of getting him into an early childhood classroom for observation, the pieces started coming together. The "experts" at his school said Autism--and so the testing began for an official diagnosis. I'll say, my mind had never gone there. The hubs and I were quite devastated and spent many a night discussing how we could help him, expressing concerns about his future, the unknown, beating ourselves up for some "loser parenting" up until that point, where we assumed certain behaviors were due to a stubborn will that needed to be broken. A weird emotional roller coaster of grief, guilt, and fear.... all rolled into one, but covered by the true belief that we had the most perfect son in the world...who was perfectly and wonderfully made...and that he was JUST THE PERSON God had created him to be. Different, not less. By July, we had the official diagnosis, started the hunt for therapies, started reading books, and coming to terms with what we thought would be the worst diagnosis to come our way.

But there is more to the story. (Need a bathroom break? Now's a great time if so.)

In August, KD started having major difficulty breathing. Not related to sickness or allergies. The poor kid just couldn't breathe. His voice would cut in and out when he tried to talk or laugh---otherwise he felt fine. His oxygen levels would drop very low, and stay there for days, despite round the clock nebulizer treatments. This happened off and on for several months, and after various appointments it was decided we need to see a Pediatric Pulmonologist. There is no longer one in Wichita, so the week of Thanksgiving we were sent to Children's Mercy in Kansas City. There they tested his lung function (which was too low), set us up on a severe asthma action plan (which has been FAB), and said we needed to rule out Cystic Fibrosis (oh my, sounded scary, but just ruling it out, right?).  They set up a sweat chloride test at St. Francis for the first week in December and we got discouraging results. His score was borderline to the intermediate category. Without symptoms, the score may not have been too concerning, but combined with what they'd been seeing, they ordered another test. So we worried, and prayed, and repeated the darn thing. A few hours later, we got the call that his score had worsened significantly, and now he was only 8 points away from the "likely" category.  So what started as a rule out, has now become a legitimate possibility and fear.

Two weeks ago, we started genetic testing to get a definitive answer. So that's where we are. Blood has been sent to the Mayo Clinic, and now we wait (and by wait I mean, heart sinks to your toes every time the phone rings---which should have been by today, but it wasn't, grrr.) This test could possibly confirm CF, but will not take it off the table unfortunately. There will be a series of tests to be completed before we get to breathe easy (bad pun). So it may be a long and winding road. We just don't know.

Here is what we do know:
1. Google is NOT your friend. It seems to pull up the worst case scenario, of every diagnosis. It lists scary symptoms like "foul smelling stools" (are you kidding me?), and leaves you CONVINCED you are on your death bed.
2. Prayer is powerful. We are blessed by so many amazing friends and family that have been praying with us every step of the way....and I FEEL them. They send encouraging texts, or sweet chats on Facebook, asking how my boy is. You all are keeping me off the aforementioned Google ledge.
3. God loves KD more than we do. He's got the whole WORLD in his hands....and that definitely includes our sweetie. That even though we as parents who want more than ANYTHING to be able to control this situation, to heal him, to take it all away.... can not, we do belong to the ONE who can do all of those things, and so much more.

I've got my kiddos ready to make some pancakes for dinner. (yes at 8:00--don't judge, ha!) And so that's it for a glimpse into our world for now.


If you're just thirsty for more....here's a link to a video I made for my husband, with our favorite praise and worship song. Some of you may have seen it. He's pretty darn special----and we may or may not have watched this a good 50 times.

http://www.youtube.com/watch?v=mgf3QfqyXEs&list=HL1388802600&feature=mh_lolz