About Me

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I am mom to Hunter - the most amazing kid. He is 7yrs old and he is hilarious - a natural comedian like his father. He's also very smart and learned to read and do addition before he started kindergarten. I am so proud of him and I love him so much it hurts. He looks and acts like your average child, (complete with tantrums and a teen complex) but his life is far from average. He has Cystic Fibrosis - a serious progressive life shortening disease that affects the organs in his body (especially his lungs). Some days I feel like we are not living in the same world as everyone else - we are stuck in an alternate reality called CF Land - full of medications, treatments, doctors, hospitals, pharmacies, fundraising and pleading. Pleading with people to donate for research and pleading with God. Pleading with God to keep Hunter healthy, for a cure, for strength, for peace, for love, to be a good mother, to be a good wife, to be a good nurse, for stronger faith, to be positive, for the happiness and health of family, friends, and other CF families.



Monday, January 24, 2011

Happy Birthday Hunter! It's a Rockclimbing Party :)

Hunter turned 7yrs old this month. :) He is growing up right before my eyes. Everyday he looks a little bigger, a little older, and believes himself to be a little wiser. :)  But, oh my mommy heart misses her baby! He used to be a total mama's boy, but he's all rough and tumble now and Daddy is his idol. I asked him today if he would ever be a Mama's Boy again and he smiled and said "always". So, thank-you my boy for that. <3

Hunter's MRSA was flaring up pretty bad at the beginining of the month. After a week on Septra & 5 days of prednisone his cough was only getting worse (throwing up in the middle of the night from coughing so hard), so we called the clinic. They switched his Septra to Zyvox and started a second round of prednisone. This seems to have solved his problems! He has a few days left of Zyvox and his cough is much better (not all the way, but almost!). But, we know how his MRSA is, so we will hope & prayer it stays down for a while.

Hunter's birthday was on Jan 8th, but at that point he was still pretty sick and missing school. We had to cancel his birthday party. :(  But, we threw him a little party at home with cake and presents anyway. Then on the 15th he had a big party with his friends from class. He went rockwall climbing, played wii games, and played dodgeball at our local gym club. It was awesome and he had SO MUCH fun. Having one child sure does have some benefits - like getting to spoil him rotten! :)

Here are a few pictures from his big birthday bash :)

He is a big Mario fan :)

He's ready to climb!

Time for some Wii!

My little Spiderman :)

Hunter's Mario Cake :)

Mom, Dad & Hunter

and presents of course!

Make a wish!

It took a few tries, but he eventually blew them all out!

He LOVED the Dodgeball :)

Sunday, January 9, 2011

Goodbye 2010 - Welcome 2011

I can't believe another year has gone by. 2010 was a big year, full of change.

I graduated from nursing school and my husband and I both started new careers. Hunter graduated from Kindergarten and started 1st grade - what an adjustment it was to go to staying at school all day! Hunter also battled his MRSA infection all year long and in the fall of 2010 we seen the first signs of this on his lungs - pfts went down and didn't come back up. It was also the year I reached out to other families living with Cystic Fibrosis in their lives. I've come to get to know some WONDERFUL people and families through blogs and on Facebook. I was even able to meet a few in person - which was very cool. These families have all touched me in some way. I have to admit, I include these children with CF in my prayers at night (and their families). It's the only way I know how to help.

2010, in the CF community, was full of hope and excitement, but also loss.
This year I saw miracles happening all around me -
- so many people with CF getting the transplants they desperately needed!!!
- exciting new CF drugs moving up through the many stages of the pipeline, they are soooo close now :)
- amazing funding around the world for CF research
- singing sisters with CF making it on Idol - giving kids with CF hope, and also boosting CF awareness!!!
- and the many little miracles in our individual lives... blessings that I'm so thankful for.

A quick pic with Ali & Christina - New Year's Eve 2010

Yet, as some of us rejoice in these blessings we've been given, for others it has been the hardest year they've ever lived. We lost very special people in 2010. These CF warriors will never be forgotten. It is heartbreaking to see any child lose their life, but when their death is caused by Cystic Fibrosis it hits especially hard. When 7yr old Conner Jones died this summer... I nearly lost it. May God give his family peace from their grief in someway, some how. And there were others... Kayla a local teen who died not even a year after we celebrated her transplant, the beautiful and talented Eva... there were big losses this year.

My wish for 2011 - a cure for CF, that the gene therapies and CFTR modulators work amazingly and get FDA approval faster than expected, that the new medical care in the US doesn't make it more difficult for our kids with CF to get and pay for the care and transplants that they need, that my son's lung function improves and that he doesn't culture any "new to him" bacterias and that he continues to gain weight and grow well, that Christina and Ali make it BIG and continue to inspire us for a long time, that those who got their transplants remain complication free, and that the families who lost their loved ones get comfort and peace.

I ask and pray for miraculous things, but I know it is not in vain. God doesn't give us the pain in our lives. Sometimes we get the miracles we pray for. Often we do not. But, he never gives us the pain in our lives. When bad things happen, he does however give us something to help us through it... something to hold on to, sometimes a way to make something good come from the pain.

For 2011 - I pray for more miracles, less pain, and that we all find that something when it's needed.

Sunday, October 24, 2010

Fall Pictures & a Monthly Update :)

So it's been a LONG while since I posted. Too long! To keep from writing another 50 page entry, I will suffice it to say we've had ups & downs the past month. Here are the top 10 things that have come up (not in order) along with pics from the last few weeks:

1) Results from Hunter's CF clinic: (blood draw) very low Vit D, (culture) MRSA, (xray) no differences from last one, (lung function) down, (cough) still there & yucky

The swings are still his favorite playground toy!

2) Plan: oral antibiotics as usual, a round of steroids (YES we did see dr. jekyl/mr. hyde come out to play that week) , Extra Vit D daily (with another blood draw in 10 days to see if we have it back up), and if the cough doesn't get better try IV vanco, if it gets better continue with usual oral antibiotics when the cough comes back

Being Silly - We love his sense of humor :)

3) Ped's Well Check visit: weight at 50%!!!!!!!!!!!!!!!!!!!!!, height at 10%!!!!!!!!!!!!!!!!  wooo-hoo!!! We had promised him a new DS when he reached 50lbs - and he got one Friday :) Way to go Hunter <3
    - he also got his 1st flu shot of the year and will need the second dose in 3 days.  :(
He was such a big boy for his flu shot .... night and day difference from last year when I had to drag him kicking and screaming! This year, he said - "mom, lets just get this over with" and he was fine until the needle came out and then he got scared, but by then it was all done! Amazing. Thanking God that he is getting over his fear of shots. He's still worried about the second shot, but not as worried as he is about the next blood draw. :(

A New DS!!!
4) Hunter's 1st field trip is on Tuesday!!!!! :) I'm taking a little time off work so I can go with him!!! We are soooo very excited - we'll be off to the pumpkin patch :) I'll be bringing my benadryl and staying on top alert as there is a petting zoo and exotic animals there as well (and Hunter is allergic to so much)

My little sister & Hunter climbing trees :)
5) My husband and I are arguing. I hate it. To be honest - raising a child with CF is ALL the stress I can bear, but then I've gone on and added a full time job (a totally new career), and now a stressful time in my marriage.....argh....I am feeling on the verge of the breaking point. FYI - I'm not talking fighting as in divorce, Greg and I have been together forever and the D word is not an option. But, a fight is a fight and it still hurts when we are at odds with each other - you'd think that after 12 years of being together we'd have all the kinks worked out - nope. I'm sure we'll pass this hurdle sooner than later, but it still fricken hurts and just adds to the mountain of crap I'm trying to balance. Some days it's really hard for me to see God in the world around me, but I know that is my fault not his. Not because I don't look (I really do), but because I haven't  equipped myself with the right tools lately.

Daddy & Hunter

Mommy & Hunter

6) I totally went all cry-baby with a co-worker Friday. We were discussing a student who was dealing with a pretty serious condition and she could really relate to everything he was going through. She was getting misty eyed talking about him, so finally she came out and told me about her health. It turns out she was a cardiac kid and now a cardiac adult...she's been dealing with a chronic illness her whole life and her outlook on life is just AMAZING.I never would have known she had so much going on. But, I had been having a hard time keeping the tears back too when we were talking about the student - because I could relate to... because this student is at a point in his life where it is all too easy to see Hunter being in a few years. Then she asked one little question "are you concerned about Hunter's future" and it totally undid me.

*sigh* I am usually sooooooo embarrassed by showing any emotion involuntarily...but this time it was okay. Awkward yes, but okay. I gained some insight from her. She has so much wisdom from having lived with a chronic condition her whole life and also from being much closer to Jesus than I am ...and I needed her words. Right before we said goodbye she mentioned how lucky Hunter was to have two parents who were strong in their marriage and how looking back it, her parents marriage had been a rock for her. To hear that the morning after I cried myself to sleep and Greg slept on the couch (yes, it was one of those kind of arguements) completely felt like a message from God himself. Feeling very touched that he showed himself to little old me, I don't deserve it, but I'm sure Hunter does.

Our Family <3

7) We had family visit who we hadn't seen in 5 yrs. They have been living overseas and finally moved back to the States. Hunter got to visit with his cousins for a weekend and it was SO much fun. They will live about 10 hrs away, but that will be much more doable than international travel lol. They recently had a miracle in their lives. Our nephew had a tumor in his leg and the specialist thought it was a rare and lethal type of cancer and was prepared to send them off for immediate treatment, but after a weekend of serious praying the biopsy came back negative. It was such a scary time - I fasted and prayed that weekend as did so many others. We are just so thankful he is okay. We love him to pieces. And, now their lives are pretty much wonderful - a new job that pays 3 times what my hubby makes and now they all have their health - and yes, I am a little jealous. Not too jealous, but what I wouldn't give to not have to worry about CF now and in the future...or not have to worry about finances (having the money for a transplant should we need it). *But, I am grateful for where we are. We are better off than we were 5 years ago, kind off. lol. We're getting there...slowly.

Hunter, Dad & the cousins :)
8) I'm fat. Really fat. I've been overweight for 3.5yrs now. I was in super shape when Hunter was a toddler. I was going to kickboxing twice a week, martial arts once a week, and the gym 3-5 times a week. Exercise was my stress reducer and it worked miracles for me!!! But, I went back to school and we had no money for gym fees and I no longer had the time.  I started gaining weight and didn't stop - now I've graduated, I'm in my thirties, and I'm having a hard time finding the time to get back to the gym, and the motivation to eat healthy. *sigh* It's all too easy to give into depression with all that life is throwing at me, but I do NOT want to take antidepressants. I need to get back into the gym - for my own freaking sanity. **oh I almost forgot, we won a free month family pass for a martial arts studio....maybe that will be our way back in...hmmm

9) It's almost Halloween! Hunter is going as Toad from Super Mario Brothers. He made his decision back in July. And once he's made up his mind about something, there's no changing it lol. He is such a character. I love him SOOOO much. We've already been to once Halloween party and we're looking forward to all the fun Halloween things coming up in the next week!

Hunter - AKA Toad :)
10) ....hmmm....well, i think i've actually ran out of things to write. (first time for everything) :D

time to kick back & relax! :)

Wednesday, September 29, 2010

Hunter's CF Diagnosis Story & Baby Pics

This long post was generated after I made a friend - another CF mom, and we swapped CF diagnosis stories and all that our little ones have been through. The following is how our family became introduced to Cystic Fibrosis:

Newborn Hunter - 9lb 2oz, C-section, a little jaundice
So, like many Cfers that were born before the mandated CF newborn screening, Hunter had a rough start in life. I'm so grateful children can't remember their infancy.

2 months old

I realized Hunter was not well 3 days after we brought him home. Pretty much from then on, once a week, I was either taking him in to see his pediatrician or calling their office with a concern. He was diagnosed with a cold at first, then GERD, then food intolerances, psoriasis, and on and on...pretty much the Dr thought I was an overly concerned new mom. Every question I had, she had an easy simple answer for. I felt stupid and questioned my own judgment – after all she was a doctor and all I had was a high school diploma, my first child, and no medical experience.

my little roo bear <3

When he was 4.5 months old he developed floating edema - it scared me half to death. I had been sure he had been retaining water earlier, but his Dr said it was baby fat! But, this time there was no mistaking this huge bubble of squishy fluid sitting on his back. His ped finally admitted she didn’t know what was going on and said she could get him in to see her specialist friend at the nearest Children’s Hospital in "a few weeks". When I heard “a few weeks”, I broke down crying and told her I was afraid he'd be dead by then. That took her by surprise – she called him back, and he said he would see us that same day. We left his peds office and drove straight there. We were living in a small city at the time and it was 2hrs away. We had one diaper bag with us and were no where close to being prepared for what was to come.

Retaining water from failing kidneys - just days before he went to the hospital

The doctor we seen was a Cardiac specialist at the Children’s Hospital. He saw Hunter for all of 10 minutes and told us something was very wrong with him - that it wasn't his heart, but he needed to go upstairs immediately (upstairs to the pediatric intensive care unit – PICU). So Hunter was admitted to the PICU right then. The doctor was right – Hunter’s organs had begun to shut down. It was awful. They placed an IV in his head and jugular vein and began to give him diuretics to get rid of the extra water he was holding – once the fluid was off it was clearly evident how small and underweight he really was. His vital signs were all over the place. He needed a blood transfusion. The intensive care physicians deemed him a mystery and told us they weren’t sure if they’d be able to save him. They wouldn’t let me feed him. They said it was because they thought he might have a metabolic disorder and it could make him worse. So the first few days he cried and cried just to be fed and my heart was so broken. He got worse and worse. He had to be placed on a ventilator. And, no the woman who snaps pictures like no tomorrow, did not take pictures in the PICU. I wanted no memories of the tube that was shoved down his throat went he couldn't breathing anymore, the catheter, the IV lines in his arms, legs, neck, and head... and I definately didn't want to remember the way he sounded when his cry managed to make it's way past the vent tube, or the way he looked for me while he was laying there, or the way he begged me to feed him when I was able to hold him in my arms... we thought we were losing him and I didn't think I'd ever want to see pics from that moment in time. And, 6 yrs later, I still wouldn't want to see them. My memories are fresh enough thank-you.

With all his organs shutting down and no real clue as to why, the doctors thought it could be due to a metabolic disorder or perhaps the worst case of Cystic Fibrosis related Failure to Thrive they had ever seen. My husband and I shook our head at CF – “that’s a genetic disease and we don’t have a family history of it on either side”! I told the nurse that I hoped it was a metabolic disorder and he told me a metabolic disorder would be a death sentence, at least with CF the life expectancy is 34. I was crushed and terrified at that point my best hope was a disease that would allow him a 50/50 chance of living to 34.

It took a while before they figured out it was CF. It was a few days before they had thought of it and when they did, Hunter was too dehydrated to do the sweat test, so they had to send off for a blood test.

sweat test machine

It took over two weeks to get the results back on the CF test. By then, my husband had used up his vacation time and had to go back to our home town to work. He was so amazing. He would work a full day, then drive the 2hrs back to the hospital to spend the night with us, just to get up super early in the morning so he could drive the 2hrs back to town and go to work for the day, and of course would drive back to the hospital again that night. He did this everyday for weeks. I was so worried he’d get into accident – fall asleep at the wheel. But, he was so worried his baby would die and he wouldn’t be there for him or me.

The day the test results came back, Greg was just getting off work and hadn’t started the drive over yet. The CF doctor came in and told me. I was all by myself. And I had to sit with the news for 2 hours. Then I had to tell Greg. It was a hard day. I was trying to be strong for my child and for my husband, and he was trying to be strong for us.

Hunter was touch and go for four weeks. We watched him “code” (heart stopped or breathing stopped) more than once. I don't think anyone thought he would make it. We prayed, our families prayed, our church prayed and eventually all our prayers were heard. In the meantime, I slept in a chair next to his "crib". His vent and equipment took up most of the space in his small area. The chair was fine - I would have slept on the floor if I had too. There was no way I was leaving him. While we were there many children came and went, most getting well enough to move to the regular floor, but some did not get better at all. I tell you what - It is enough to drive a mom crazy to sit in a room with her child who is straddling life and death all the while listening to the wails coming from the other side of the plastic partition - knowing that she just watched her baby die. Some things you never forget.

After a month of being in PICU, Hunter was stable enough to go to the regular Ped's floor, where we were stuck for another 5 weeks trying to get him strong enough to come home. But, he did it - he gained weight. His hair that had fallen out due to malnutrition began to grow back all fuzzy and blonde. He smiled so much and acted so happy. No my child was not the "colicky" baby that his original ped deemed him - he was a happy baby who had been in a lot of pain.

Hunter wants to go home!

such a happy baby :)

During Hunter’s time in the hospital, he had many things occur. He had his first bronchoscopy that showed his lungs were clear. He had a colonoscopy and endoscopy which showed his whole digestive track was swollen and inflamed. He received blood transfusions and acquired CMV (because they only use CMV screened blood for cancer patients and newborns – not dying CF patients that are 4.5 months old). He was determined to have liver disease with an enlarged liver and enlarged spleen, but they couldn't be sure if it was from the CMV or the CF. He caught C. Diff (a very, very bad and contagious digestive bacteria), he became colonized with MRSA (a very, very bad lung bacteria), and he went into Septic shock (a very, very bad blood infection – he was lucky to be alive – again). See all the “very, very bads”? Each of these events of course meant more procedures, more pokes, and more pain. It seemed every time he made progress he was hit with something new.

At one point they flew us on an air ambulance (Hunter's first airplane ride) to an out of state Children’s Hospital, because our hospital’s GI had quit and a new one had not been hired yet. I thought we were going there to get a handle on the C. Diff, but while we were there the GI wanted to do a nissen/fundo surgery and also put in a g-tube because of his reflux. I researched the nissen/fundo and prayed about it and then refused it based on what I found and felt. The GI was pissed and told me that my son would die because of my decision. Then she sent us back to our children’s hospital (by ambulance). Yep, a 5 month old baby with reflux strapped to a board in the back of an ambulance for 8 hours – not good.

When we returned, I talked to our hospital’s surgeon and he said if it had been his child he would have refused it too. It took such a weight off my shoulders. And the reflux that the out of state GI said would kill my child – well it went away after Hunter was on a good dose of enzymes (which is what I thought would happen). In the meantime we did the Nd tube, and after a few swallow studies to be sure the reflux was really gone, we switched to an Ng tube and worked on getting his stomach to stretch enough to hold a normal feeding.

The pediactric floor was not as scary as the ICU. But it was still hard. We lived there with Hunter during that time. The only time I left his side was when Greg was there, with the exception of 2 times: once when he was sleeping and I ran down to the cafeteria (bad experience) and then once when Greg's dad came and said he would watch Hunter so Greg and I could have lunch together (I called 15 minutes after we left and could hear Hunter crying in the background, so we turned around and went back). The hospital is not a daycare and the nurses are very busy. They do not have time to comfort tired, scared or lonely children. My heart broke for the little ones who cried off and on all day long - the ones whose parents only came to visit once a day. :(

Daddy and Hunter
I have no idea how we made it through all that we did. Actually I do - we had God on our side. We prayed and prayed and never stopped. Some of the prayers were said begging, some were said bargaining, and I still remember those promises I made at his bedside. Some people wonder why weren't angry with God after Hunter's diagnosis, but how can I be angry with the only one who loves us unconditionally, the one who's promised to welcome my child into his arms when his life on earth is done. I can't afford to be angry with the only one who has the power to save my family.

Yes, we saw God's miracles in the hospital - and Hunter became our million dollar miracle baby. :) Actually, I’m pretty sure it was more than a million. I stopped looking when on day 3, the bill was over $150,000. Our insurance was crap and eventually we filed bankruptcy. It’s not something I’m happy with but we didn’t feel we had any other options at the time.

When we brought Hunter home from the hospital, he was on oxygen, had an nd tube and feeding pump, and many, many medications. Slowly we were able to lose the oxygen, then the tube, then a few of the meds. Slowly, we got to a place where things were calm and the breathing treatments and the meds became normal and routine. A time when we were no longer just trying to survive, but we actually had time to stop and think. It was at this time that I hit rock bottom in the grief phase. I had this little baby who had gone through hell, and here he was on a vigorous medical schedule and it was the healthiest he would ever be… and the future would hold more hospital stays like the one we had just been through, more pain and suffering and I hurt so much for my child to have that future.

1st pics home from the hospital!

at the hospital waiting to replace the Nj tube he pulled out

It took a time of grieving for the normal life we had lost, but eventually I cried less and hoped for more. Eventually I decided to fight back with researching as much as I could, fundraising for a cure, and later becoming a nurse. I’m not perfect in my hope or positivity. In fact – I’m far from it. I still have moments of depression. When Hunter has a set back or we’re told things are “progressing” down the CF path…I have to deal with those old emotions of fear, anger, and depression all over again. But, it never stays long – it can’t. I have a child that needs me to be strong for him. And this blog (along with a WHOLE TON of praying) helps me get all my mixed up emotions up and out, so I can go on with my life, with my role of wife, nurse, and mom to the greatest child ever.

9 months old - strong enough to sit up now!
learning to eat again :)

Anyway, that was our start with CF. Since then - things have been much easier, thank goodness!

Since the diagnosis:

The liver disease seems to have went away? When Hunter was a year and a half old his liver enzymes started coming back normal and we went to a new GI who decided that he didn’t need the Ursodiol anymore. It is something that still worries me though. You can have liver damage and normal liver enzymes… elevated liver enzymes are actually a late sign. We haven’t seen a GI since. But, I think maybe we should on a yearly basis just to continue to watch for changes.

9 1/2 months old - no more ng tube!!!

The MRSA he caught back then, did colonize, and has been an ongoing struggle as I’ve stated in earlier posts. Weight has been our other issue, but we seem to be managing it much better the last few months - thanks to Scandishake. And as of last week, we added an appetite stimulant which really seems to be working!

Hunter's 1st Halloween :)
Hunter cultured pseudomonas once when he was 3yrs old. At that point we did the inhaled Tobi for a month, took a month off, then did it again – after that he had a clear throat culture and we stopped the tobi. It took 3 clear cultures before we decided he was likely not harboring it deep in his lungs somewhere. It's my theory (you might laugh at this), that the MRSA in his lungs has taken up all the space, so there's no room for pseudo to grow. Part of that theory comes from my fear of pseudo and my hope that dealing with one bug is more than enough!

Hunter's 1st Christmas :)

Mother's Day - 15 mo's old
Hunter also caught H1N1 last year too. He was very sick. It’s the only time after his diagnoses that I have seen him lose all energy. I kept him hydrated well and he took Tamiflu - we managed to avoid a hospital stay! Yay! But, I felt really bad – at the time I was doing my pediatric nursing rounds at one of the hospitals – and guess what – I was taking care of 6 kids there, all with H1N1 too. I thought I had brought it home to him, but then again half of his class had already come down with it by that point, so who knows where he got it. Either way, the hospital experience made me more confident about taking care of Hunter at home.

My chunky monkey - when his BMI was good
Hunter will probably be our only child. I’ve considered invitro (I personally can’t risk giving another child this disease). But, now that I am finally finished with school and it might actually be financially feasible to do invitro…my husband is not so sure he wants to go back to raising babies again. We’re in our 30’s and we’re both enjoying having an independent, almost 7yr old. But, gosh – some days I find myself really wishing to have that big family. So who knows if we will go this route sometime in the next couple years.

Mommy & Hunter <3
Thank-you to all who read our diagnosis story. Hopefully, there will be less parents with similar stories now, due to routine and mandated CF screenings. Unfortunately, many mutations are missed on screening, and some children will likely still go months, even years without a proper diagnosis. I pray for all our little CF warriors and their amazing families, and I pray for a cure.