Phoenix's Fight

Phoenix

2012-01-14T23:03:00.001-06:00

Happy New Year!

2011-12-31T20:21:00.003-06:00

It's been a crazy year of living, loving, and learning! We continue to grow as individuals and as a family! Each day is a new learning experience in the world of CF and the other obstacles that have come our way! January is filled with doctors appointments and a lot of new beginnings! We want to wish everyone a very safe and Happy New Year!

Going orange for Josh and Moganko

2011-12-22T18:21:00.009-06:00

Welcome to Joshland! Click HERE to visit!

2011-12-08T19:59:00.003-06:00

It's crazy when I sit back and think how far we have come in the last 3 1/2 years. The first year we fought to keep our head above water. The second year we researched to figure out this terrible disease. The third year we continue to struggle to understand as new health issues continue to rise up.
With CF it is not just the person with the disease that is affected, it is the entire family. Our older children watch what their brother goes through everyday and it raises questions within themselves. Phoenix struggles to understand why nobody else has CF. He has been asking a lot lately, "When Daddy gets little like me he will have CF" or "When Emma gets my age she will have CF." I can not even imagine what goes through his head everyday. The thoughts he has seeing his siblings carrying on with life while he has to stop and do treatments. People tell me that he does not know any different, this is all he has ever known. Yes, that is true but he is smart enough to see that this big word that he struggles to say plays a big role in his life.

I hear all the time, "But he looks so healthy." If people only knew...........

Happy Thanksgiving

2011-11-24T10:24:00.002-06:00

Happy Thanksgiving from our family to yours!

Thank you for being a part of our crazy adventure through life!

Hope your day is spent building amazing memories with the ones you love!

Catch up

2011-11-21T20:28:00.006-06:00

This is little man's first attempt at PFT's! He did amazing! Right now we are just getting him acquainted with the equipment and what he needs to do, but so far he did great!

It's hard to believe that he is old enough to help! Phoenix has really been taking interest in learning how to do things himself. He can now connect and disconnect his g-tube.

It was great to see this in our little town! Yes, I did follow this truck around until he stopped to eat so I could take a picture! What a huge statement!

A little late but this was Scooby Phoenix for Trick or Treating!

As we approach Thanksgiving we have so much to be thankful for, and this year we are excited to get to spend it as a family! With Dennis' job we sometimes have to do things late or early for the holidays!

So little man has been struggling! GI and ENT issues have really had him down for awhile, but we avoided a trip to the big house! :-) This weekend he started with a very rough cough so we are keeping an eye on that. We will venture to CMH on Dec. 1 for follow up with CF Clinic and to get his liver scan done.

The month of alone the CF community has been rocked with the passing of 7 amazing CF fighters! (these are just the ones I know of) One beautiful boy was only a week old, my heart breaks when I hear of these angels earning their wings. We need a cure!

Looking back

2011-11-13T21:12:00.009-06:00

It is crazy how far we have come over the last three years! We have loved and learned so many things along the way. The first year we struggled to keep our heads above water as we battled to figure out what this disease was and what we could do to save our baby. No we stand on our tip toes and have learned to hold our breaths a little longer as we continue to try and understand this disease and the affects it has on Phoenix everyday.
We take each day as it may come and at nights end are grateful for what we have been given. We have learned to cherish the little moments and have come to realize that nobody is guaranteed a tomorrow.
Thank you for staying with us on this journey and fighting this fight with Phoenix. I will try and be better at updates, and get some more recent pictures posted.
They say that when your child is first diagnosed you go through stages of understanding. Well it seems that I bounce around in mine. I am so grateful for the CF family I have built through this blog, you have pulled us through a lot of tough times!
So for now we send our hugs and loves!

Video

2011-10-26T18:57:00.001-05:00

Time

2011-10-25T21:02:00.002-05:00

Where has the time gone? Well the road to recovery did not last long. Little man is all congested again and has started coughing.

We will go to CMH on Thursday to see the doctors, get cultures done, and we hope PFT's.

I guess it is one day at a time and enjoy the times when he is healthy. It seems our lives have slowly been turning back into a world around CF and it's side effects. The extra diseases that come along with it and the stress of figuring it all out.

Powerful

2011-09-28T20:28:00.003-05:00

Surgery is over and we are home. The last two days have really taught us a lot about life and living for today! We have such a strong amazing little boy! He puts forth every little bit of fight that he has!
I have walked through this life putting one foot in front of the other and not worrying about what was in front of me.
After yesterday I learned that the power of love and prayer can heal, and before I take the next step forward I have a lot to be thankful for, first of all you! Thank you for fighting for our little boy! Thank you for loving him! Most of all Thank you for believing in him!

A time for firsts

2011-09-20T20:39:00.009-05:00

Phoenix getting ready for his upper GI!

Firefighter Phoenix! He stopped talking about Santa for all of 5 seconds!

Yes, that is my 3 year old climbing a rock wall!

Making his way to the top!

Walking with one of his favorite people, Jago!

Phoenix is growing up so fast, and CF continues to play a big role in our lives! The one thing we make sure is that CF plays a part, but it does not depict who we are or how we live! Phoenix is scheduled for surgery next week to have multiple things done! These brave little boy takes things in stride, I wish I could have half the courage that he does!

Climb for Life

2011-09-13T21:39:00.001-05:00

Hometown Hero: Climb for Life: MyFoxDFW.com

Faces of CF

2011-08-21T21:47:00.000-05:00

Living for today!

2011-08-13T23:30:00.002-05:00

We are busy getting everyone ready for school! Phoenix is so excited to be starting preschool and Emma is ready to take kindergarten head on! (She does not believe us that this will be an all day venture!)

Phoenix is still struggling with his sinuses! I will be calling the ENT next week to see what our next step would be! He is so congested and can not breath through his nose at all!

We are still pushing a lot of fluids and have been able to cut back on some of his meds. So far his tummy is doing better, but we are still keeping a close eye on things!

For now we have a few days of summer left and we are enjoying every minute! Time flies by but family is forever!

We still have big plans before winter gets here! Get ready we will be having new pictures to share soon!

Phenny Man Update

2011-08-06T20:03:00.002-05:00

This is not a recent picture, but one that I love! This was taken with his "other" family! They have so much fun together!

Phoenix is home and doing better! He is still on a lot of medicine and we are being very careful to make sure he takes in lots and lots of extra fluids. He'll see the doctor on Friday and then go from there!

We want to thank everyone for all the love and support given to Phoenix while in the hospital! He received 129 cards while in the hospital and a stuffed monkey a balloons from Traccee and Mikee!

Also little man is going to preschool this year! He's so excited! It'll on be two afternoons a week, but I think it'll be perfect for what we are needing for Phoenix. It will get him introduced to school, give him a little independence, and get him around more children his own age! Where have the last 3 years gone?

Looking good!

2011-08-03T22:10:00.004-05:00

Phoenix is doing so much better! Think we may have found the right combination of medications! Not sure how long he will be here or what tomorrow has in store! But late today he was hungry, smiling, singing, and playing Santa!

These are the new shirts that Grandma bought the boys! I'm sure Phoenix will love them waring them! LOL!

Thank you for continuing to show your love to Phoenix! He got another 25 cards delivered to his room today! His little face could not get much brighter as when he gets something special from all his friends! Thank you for helping him feel so special and loved!

Phoenix's wall of love!

2011-08-02T10:56:00.001-05:00

Pics!

2011-08-01T15:58:00.003-05:00

Balloons and a Monkey from Phenny's CF Family Tracee and Mikee! Thank you guys!

Update

2011-08-01T15:01:00.001-05:00

This was Phoenix's cool ambulance from last night! Right now we are just hanging in, will know more in the next 24 hours.

The Big House

2011-08-01T08:41:00.003-05:00

You know the saying mommy is always right, well yesterday my gut kept telling me something was wrong. I pushed it away and told myself to live in the now!
As the day progressed Phoenix's abdominal pain got worse and so did the rest of his symptoms. After a trip to our local ER, we were in the back of the beautiful and bright Yellow CMH ambulance on our way to KC.
We are waiting to do some more tests and get answers. What we do know is he has an obstruction in his small intestines and when he was getting sick may have gotten some stuff in his lungs.
Minute by Minute, it's the easiest way to go right now!
Will update when we know more!
We have been asked about sending cards and such to Phoenix, well CMH has an awesome online link of love! Click HERE!

Outing!

2011-07-12T21:13:00.003-05:00

CFers and Sinus Surgery

2011-07-01T19:34:00.002-05:00

Run Sick Boy Run has a great article about the effects of sinus surgery in younger CF patients and pulmonary lung function. Click HERE to read!
We are very excited for August to get here! We will actually get to meet Ronnie in person at 2011 Cystic Fibrosis Education Day! If you all remember Ronnie is the one that does all the great music videos with his wife Mandi, Phoenix loves them! There were many nights that turning on the videos was the only way to get treatments done!

That laugh...........

2011-06-15T23:20:00.002-05:00

One thing that I always loved was Phoenix's laugh! He has this laugh that is just infectious! You can hear it anywhere and know who it is! Even on the worst of days, he would still manage to get a laugh out at some point during the day!

Over the last couple of months I've noticed this change in his voice! There is no nice way to describe it other than very coarse. He reminds me of a little old man. When it first started it really bothered me, then it just became a part of who Phoenix was. Then the other day we were in the van and Phoenix starts to laugh, it wasn't his laugh. I don't know what it was or how to even explain it. Part of his little laugh you couldn't even hear. It broke my heart.........

As we walk through the store, Phoenix loves to run by the cart! He laughs, plays, and says hello to everyone. For the most part you can not tell Phoenix has CF! He just looks like are very WHITE little boy, that doesn't get much sun! As we walked through the store someone commented on how cute he was, and of course I said thank you! (And of course followed up by Phoenix saying thank you too!) As he continues to carry on a conversation with this lady, she looks at me and asks if he's been sick. I said no, why do you ask. She said oh...his voice just sounded different.

I hate to be a mom that worries or jumps to conclusions. My heart is just telling me it is something more.

It's all worth it!

2011-06-12T00:56:00.001-05:00

Have I told you how much I love you little man?

To the moon and back again!

What did I do so right to get such an amazing gift?

Another day

2011-06-10T22:18:00.002-05:00

So after my little rampage yesterday, I am back on two feet! I don't have time to have a pity party for myself! The one thing I do know is when I get mad, I usually figure things out!

So tonight I decided enough was enough, and the next person that tells me "Oh, but he looks so healthy" or "Sorry Cystic Fibrosis is not debilitating," I am going to pop their head!

Well the one thing about this Momma is don't mess with my babies! I don't care if they are 85 years old, mess with them and this mom will come out in full force!

So after phone calls today, the ball is rolling! Let's see what happens next, cause this mom is not taking things anymore!

Little man is finishing up his antibiotics, and is starting a new treatment for his sinuses. We are also adding and extra bolus feed in there during the day. His weight is down and now it's time to put things in full gear. Phenny Man can not afford to lose anymore pounds!

Alright to answer a few questions that have been asked!

* Yes, Phoenix is still into Christmas full force! To him everyday is Christmas and his sleigh could fly him anywhere!

* At this time Phoenix will not be going to preschool next year! It's been a tough decision going back and forth, but him catching RSV the first winter with vaccinations and landing in the hospital was enough. Nothing is set in stone, but at this time the answer is no.

* Yes, Phoenix does sinus rinses. No, he does not find them and sometimes will ask for one to be done.

* No, we do not let medication and treatments be an option for Phoenix. When it is time for medication or treatments it is time! No if's, ands, or buts about it! We do give Phoenix options in other areas of his life that we normally would not at this age. Don't get me wrong he does get upset about doing treatments or taking meds, but if you ask him why we do this he will tell you, "they make me feel better." I know everyone is different but the way we look at this is if we teach him their importance now, and show him they are not optional it will help in the long run. So far so good!

I promise new pics soon! This crazy boy feels good when he's on antibiotics and loves to just live his life! He lives in the moment, something I'm trying to remember each day!

Brick Wall

2011-06-09T22:25:00.002-05:00

I feel like these last few weeks I have been doing nothing but banging my head against a wall! I am so tired of hearing how CF doesn't really "fit" into any of the illness categories!

When little man is sick he can not have dairy products, this makes his mucus thicker and causes more issues for him! So instead we will do the Breeze Juice (that has extra calories) or Pedialyte to help thin things out.

I'm tired of hearing "he doesn't look sick." It takes everything in me not to say come home and let's see how things go.

Last week his congested came back in full force! Horrible ear infections and he was just miserable! We saw the ENT this week and his tubes were plugged along with his nose! They stuck metal suction equipment up his nose to try and clear some of it! They stuck a microscope in his ear and then used a long needle device to remove a plug, then all the infection started draining out yet again! So we are starting new medicine and seeing how things go.

I am tired, I am frustrated, and I am sick of hearing "Sorry CF doesn't fall into that category." I have reached the boiling over point and I am ready to explode. My son deserves the best in medical treatment. No he doesn't have cancer or heart disease! I apologize his only diagnosis is Cystic Fibrosis. I apologize that for those "medical experts" out there they don't see that Cystic Fibrosis as a disability. I apologize that my son struggling to breath does not fit your criteria. Please go ahead and continue to tell me what medications and treatments you feel are necessary for him! Please continue to not agree with the doctors, you know those people in the white coats that specialize in Cystic Fibrosis the ones with the initials behind their names. I appreciate getting to talk with you all the time and thank you for giving me the time to explain to you over and over again why this is necessary!

Frustrated is what I am! Ready to call it quits!

What a month!

2011-06-05T00:06:00.005-05:00

Well little man is back to feeling like yuck again! He is very congested and very very thick mucus. We had a few rough nights and ended up having to call the doctors. He's got a very bad ear infection and sinus infection. We will got to CMH this week to see the ENT again and see what our next steps are, he is miserable and there has to be something out there to help!

So for now it's back to ear drops and antibiotics, I guess this is part of the roller coaster that we live on. I just wish there was something I could do to help him. It broke my heart to hear him say, "Mommy my nose is broke, I can't breath." What do you say other than buddy i know.

Helpless:

1. Unable to help oneself; powerless or incompetent.
2. Lacking support or protection
3. Impossible to control; involuntary

Preschool time!

2011-05-29T00:26:00.002-05:00

3 years

2011-05-27T07:36:00.010-05:00

“The ultimate measure of a man is not where he stands in moments of comfort, but where he stands at times of challenge and controversy.” Martin Luther King Jr.

“You can never cross the ocean unless you have the courage to lose sight of the shore,” Christopher Columbus

" It is a mistake to try to look too far ahead. The chain of destiny can only be grasped one link at a time…"--- Sir Winston Churchill

Take the time to tell those near and far how much they mean to you, remember today is already tomorrow and the path for the future is unknown.

May 13, 2008 - Cystic Fibrosis test is Positive
3 years! That's how long it has been since CF entered our lives. When I think of all the pain in caused our family, I also have to stop and remember the amazing gift that we got with it also, Phoenix.
After his diagnosis I remember sitting in a big conference room with so many people I can't even count. There were CF team members, genetics, surgeons, NICU doctors......To see them all in one room was to much for me, I sat down in the chair and just tried to breathe. I remember the genetics lady drawing a picture to explain this all, I don't remember a word she personally said. I remember the CF Team going over the history of CF and telling us that people are now living to 37 and beyond! I remember them telling us the future has a positive out look for our little Phenny Man! I don't remember any other words that word said by an specialist in the room.
Then I took a deep breath and told them that we were going to fight this! I would not let CF run our lives or our sons. I came home with that same attitude, CF was something Phoenix had and I would do everything in my power to keep it from affecting his everyday life.
Here we are 3 years later and boy has our world changed. My house looks like a medical facility and we run our lives around getting all the treatments and medications in.

I went into the CF diagnosis with my eyes closed thinking we could overcome this battle. Please don't get me wrong I still feel we will win, but it won't come without it's own trials. Our other children know first hand what CF, my 5 year old always asks Phoenix if he took his enzymes before he eats! CF has become a part of every day lives and has changed who we are.
We've lost friends due to this terrible disease, and I can not hold anything against them. This disease is one that affects everyone around them. The new friends that we have met we will always hold dear to our heart! The one thing we've learned is that the friends we do let really close to us have to be ones that can handle the good and the bad.
So here we are 3 years later and boy how our world has changed. We've had ups and downs. Good and bad! Amazing Memories and times of heartbreak!
But guess what?????? We are still here! We will stand strong! We will beat this disease! We will take the good with the bad and we will hold our heads high while doing it!
Thank you to our amazing family and friends that have gone on this journey with us and stayed by our sides through times of joy and times of pain! We love you all and we know the next 3 years will be just as adventurous, so get ready for the ride!

That's how I roll!

2011-05-10T19:57:00.000-05:00

Farmer Phoenix and Christian

2011-05-10T04:02:00.000-05:00

Remember to Say Thank You!

2011-05-09T20:56:00.001-05:00

Happy Mother's Day

2011-05-08T00:46:00.001-05:00

31 days of May the Cystic Fibrosis Way - Day 3 Medications

2011-05-03T19:47:00.006-05:00

Oh my! This poor guy is full of meds! We have created our little charts to give meds, order forms to keep track of when they've been ordered, and his own shelves in the fridge! He's his own walking little pharmacy! What's sad is he's starting to be able to name each one of them, yes good for him. But sad for me, it is the reality of what CF is.

So here we go:

Creon 6 - every meal and snack

Viokase - G-tube Feeds

Iron - 3 times a day

Lactulose - 1 or 2 times a day

Claritin - 1 a day

Zantac - 2 times a day

Vitamin C - 1 a day

ADEK - 1 a day

Nasonex - 2 times a day

Singulair - 1 a day

Culturelle - 1 a day

Duoneb - 2 times a day

Hyper Sal - 1 a day

Combivent - 1 a day

Pulmozyme - 2 times a day

TOBI - 2 times a day 30 days on 30 days off

Erythromycin - 3 times a day

Boost Kids Essential 1.5 cal - 55mL an hour for 10 hours through g-tube and extra feeds as needed

Boost Breeze - 1 a day

Salt - 1/2 tsp added to night feeds

31 Days of May the Cystic Fibrosis Way - Day 2

2011-05-02T09:34:00.000-05:00

The first year I think I forgot to breath! While I cherished every moment, it was also a year filled with bumpy and curvy roads! I can not count how many times Phoenix was in the hospital! We were determined to do it on our own. Phoenix was our responsibility and we were ready to take it on full force. A few months in reality settled in. One of us was up at all times. Phoenix struggled to breath and breathing treatments were being done around the clock. We were overwhelmed and finally started nursing care at home.
Phoenix was still being hospitalized at least once a month. One day that stands out in my mind is also a day my world almost came to an end. I got home from work and Phoenix had the best day ever. He was about 3 1/2 months old and we were sitting in the chair rocking. Phoenix had a little cough and the nurse asked if we were ok for her to leave. Of course I said sure we were fine and she left. A few minutes later Phoenix's cough got so bad that he turned blue. His breaths were very deep and shallow, his skin was gray and his lips were blue. I put him in the car and headed for the hospital. On the way I called the doctor, they would be ready for us. I still can see myself taking him out of the carseat and handing him to the nurse. He wasn't moving, crying, or even fighting. I just cried and begged for them to save him. I'd only gotten 3 1/2 months with him, I wasn't ready to say good bye. I wasn't ready to let CF take him from me. The doctor and nurses continued to work on him and a helicopter from Children's was sent to pick him up. They could not get an IV and he was on oxygen. ( a lot of oxygen, I can't remember numbers but I remember that is all you could hear) I kissed his forehead and begged him not to leave mommy, I needed more time. The helicopter nurse assured me she would take care of him. The 2 hour drive to Children's was the longest of my life, I don't even remember driving there. When I got to his room all I saw was resuscitation equipment all over his bed and Phoenix was already in the OR. It wasn't until several days later that I would learn that our little boy had to be brought back to us in the helicopter and they were still working on him upon arrival at the hospital. As I drove to the hospital my little boy fought to stay with us, he knew his mommy needed him more than anything in this world.
The next few months was a roller coaster ride, we struggled to keep him healthy. We struggled to keep him breathing. Off the top of my head I can count 8 helicopter rides and 2 ambulance transports, and that is not looking back at the information just what I can remember.
During one of his emergency trips to the hospital I recall getting off the elevator and the doors opening, all the nurses had smiles on their faces and were happy to see us! One nurse gave me a hug and said, "Welcome home." It was then that I realized this would be our 2nd home, that these faces would become part of our family! They would join our battle against this disease and would hold Phoenix's hand during his journey.
The next few months would drag on forever. My poor little boy would go through surgeries and all kinds of testing. He would take more medications in his first year than I had in my entire life. So many days my head was spinning so fast I didn't even remember getting out of bed, let alone ever getting into bed. I felt so alone in the world. My baby was fighting for every minute of his life, and I was determined to fight with him. As the med list continued to grow and the list of doctors got confusing I questioned if I could do this. Could I give him what he needed? Could I do what was best for him? We turned our home into a little mini medical facility complete with oxygen and all the equipment needed! We changed our course of just getting by and went into fight mode! We were going to beat this.
Then a friend came to see me, they wanted to do a benefit for Phoenix. Our savings was wiped out and there were still so many things we needed to do in order to help our son. I remember going to the benefit and seeing all the love for this little boy that most of the people there had never met. That day changed my life, I knew we would never be alone. Even if the benefit that day didn't raise a single penny, I knew Phoenix had an army of people ready to stand beside him and beat this disease. How could we not win, we had the world on our side!
Phoenix had the power of love in his corner, and in my mind nothing can overcome that! We will fight and we will win. The journey will be filled with obstacles but we will not go through them alone. When the darkest cloud is over our lives an umbrella will be put over our heads before it starts to rain, why because we have to power of love!

Favorites

2011-05-01T03:52:00.000-05:00

Sinus Surgery #1

2011-04-30T22:25:00.002-05:00

A day to celebrate!

2011-04-30T21:25:00.003-05:00

It's hard to believe that my little boy is 3 today! Where has all the time gone? We celebrated with all his favorites: double stuffed oreo's dipped in chocolate and popcorn shrimp! I know not the normal requested meal of a little man, but I say whatever gets him to eat!
We are seeing all the benefits of surgery! He still has a runny nose, but as full as everything was I'm sure it will drain for awhile!
May is Cystic Fibrosis awareness month! On facebook the amazing LL started the 31 days of May the Cystic Fibrosis way! Each day we share something about our journey with CF. For May 1st it was about the diagnosis! So here is our story:

We knew he had a bowel obstruction. Our entire pregnancy the doctors told us it was no big deal! So we when they said a c-section was needed 6 1/2 weeks early our heads were still in the, everything will be ok mode! Our beautiful little boy was born weighing 7lbs 8oz, and his little tummy was hard as a rock!
On the 2nd day of life Phoenix was taken to CMH hospital and had surgery for a meconium ileus. I had just got released from the hospital so my amazing husband was at our sons bedside, holding his hand and telling him everything would be ok. The doctor called him to a little room and started to draw a picture for him. He explained the surgery that had just taken place, and how severe things were. He then said it is greater than 95% chance that he had Cystic Fibrosis. I called within a few minutes of this conversation ending to let him now I was on my way, I got told Phoenix was doing great. Then I asked the question, what caused this. Dennis said just get here and we will talk, I knew something was wrong. When I arrived I got taken to the same little room and Dennis drew me the same little picture, I kept asking why. He looked me in the eyes and said the words I never thought I would hear, Cystic Fibrosis. It would be 2 weeks before we knew for sure, but we knew our little boy would be in that 5% that didn't have it. We stayed by his bedside night and day! We knew our Phoenix would beat the odds, he already had! They told us he wouldn't breath at birth, he did! They told us we wouldn't hear him cry at birth, he did! We were told at 8 weeks pregnant that we may not have a baby in the end, and we did!
May 13, 2008 we were walking into the NICU! I always laughed in the mornings, at 7am it looked like feeding time at the zoo! From 6-7am all parents had to leave the unit so nurses could give report! At 7am the doors opened up and all the parents would go rushing in! I know what a crazy thought but it gave me a smile every morning. On this morning Dennis and I were walking into the unit hand in hand. Dr. P was walking out, he stopped an looked at us. His next words I will never forget. Standing there in the hall, surrounded by parents ready to see their babies, he stopped looked at us and said, "By the way the tests came back, your son has Cystic Fibrosis. There will be some people coming around to see you." He then turned and walked away, I could not catch my breath. The doctor never even looked back, never said words of comfort, or pretended to care. I held on to my husband and cried. I needed my baby, I needed to hold him and tell him I loved him. I needed to be his mommy and try to figure out how I was going to save him from this deadly disease. I walked into his little cubical, looked at our nurse who had just heard the news and herself was speechless, and picked up my baby. I needed him and he needed me. We would go on this journey together, and I promised him I would fight this battle till my final breath. We would win, we would beat CF. Phoenix may of had CF, but CF could never have Phoenix.

They say it's your birthday!

2011-04-30T12:40:00.002-05:00

Happy

3rd

Birthday

Phenny Man!

Surgery

2011-04-26T21:29:00.003-05:00

Surgery is completed and this is the first time in I don't remember that he is asleep and I can't hear him from the other room. He's sleeping so peaceful. Surgery was a complete success and we are already seeing so much improvement! Thank you for all the prayers and well wishes, we hope to go home in the morning. Update again tomorrow!

Happy

2011-04-24T22:16:00.005-05:00

Happy Easter

2011-04-23T21:08:00.002-05:00

Happy

Easter!

Can you guess?

2011-04-20T17:51:00.003-05:00

Can you guess who is getting ready to turn 3? Let's say this little person is very excited and has his heart set on a Christmas Birthday/Buzz Light Year Themed Party! So get ready! We've got some fun pics that will be posted, along with the Easter fun that has been going on in our house! Surgery is next week!

Hanging in

2011-04-13T19:19:00.002-05:00

Well Phenny man is hanging in! We are still struggling with sinus issues and everything else that comes with that! We got the blood allergy testing completed, and have an appointment in May to get skin testing done!

Sinus surgery is scheduled for the end of the month, so we just have to get through a few more weeks!

Hanging In

2011-03-26T10:03:00.008-05:00

Life is moving along in fast forward, and as we struggle to keep up I wonder where the summer will lead us! Phoenix's little head is getting congested again, and his little voice is hoarse. Yesterday he had so much fun playing with the local preschool group! He thought he was something big getting so much attention!

Surgery is rescheduled for April 26th, I hope he can hang out that long without antibiotics. I called to talk with Dr. S yesterday, about things for me. He'd been on vacation since we left the hospital and we had not talked with him, first thing he asked was how little man was. It's so nice to have a doctor that cares. You can tell Dr. S does, he knows everything that has ever happened to Phoenix. He took it upon himself to learn everything he could about CF and if he doesn't know something he tells us and finds out!

Life has been moving so fast, I look back and wonder where time has gone? We struggle to keep up with things and in between times try and figure out what direction to move into next. We try to make CF the smallest portion of our lives, but when you walk into our house the first thing you see is medical equipment!

These last few months I've struggled to figure out where we belong. As a family! As individuals! As a family with CF! Since the birth of Phoenix our lives have changed, our friends have changed! To those that stuck with us thank you, to those that joined us thank you! We've learned through the good and the bad! Rejoiced for miracles and prayed even harder for things we were told we could not change! I've met some new CF mamma's that have helped me remember what is important, at several points I wanted to quit and they wouldn't let me! Thank you guys, I love you all!

We have a lot of changes coming up this next year! We are excited and scared at the same time! I know they will be good, I have to believe they will be! I have to believe that our struggles will work themselves out and the bigger plan is worth the unknown!

Redo

2011-03-18T19:33:00.002-05:00

Well I sit hear snuggling a little boy and watching Christmas movies! Yes, you read that correctly. Phoenix is still in love with his Christmas, and what tops it all is his spirit. He has a heart of gold to just give to others.
Tonight his little head is so congested, he's starting to get miserable again. His surgery has been rescheduled for the end of April. That seems like forever away, I just pray little may can handle things that long.
The good thing is he's drinking a lot of ice water, the colder the better! As long as we can stay on top of fluids he should be ok!
Sorry for the short update but little man is ready for a movie change!

Updates

2011-03-14T19:04:00.002-05:00

Sorry for the lack of updates! It's been a crazy few weeks. Phoenix spent some time in the hospital for RSV, needless to say he was not impressed with the IV's. He's doing better but is still requiring extra treatments, and medication. Sinus surgery for right now is on hold, we will have to wait at least 6 weeks to reschedule due to the RSV.
We will have some new family pictures soon, I can't wait to get them posted.
I will try to do better at updating! Hope we can get things back to normal soon!

Breathe by Matt Scales

2011-03-06T18:53:00.000-06:00

Day at the hospital

2011-03-04T20:59:00.002-06:00

Today was spent at the local hospital with little Phenny Man! We got there at 8am and left around 6:30pm. I'll update soon, but for now we've been up since 4 am and we are all exhausted. Phenny is still not feeling the best and we will have to go back tomorrow if there is no improvement! For now we need prayers to help little man stay strong.

Update

2011-02-27T01:22:00.003-06:00

Sorry for not updating! Talked with ENT clinic on Friday, the scheduling nurse had been out sick so no one got the message to schedule Phoenix for surgery! I talked with a wonderful new nurse that said she would call back on Monday with all the information. She was very nice and apologized several times about the confusion.

Right now we are starting to see lots of congestion again! Let's pray we can stay off antibiotics, he's been on for 28 days!

So after taking in all the information the other day, I called our local Dr. and had my little break down! He is great about being honest and up front about everything with me. He knows that I deal with things better when I know everything! He had not seen any of the new tests that had been done, but took the time to listen and help me understand a few of the things I was still questioning. The one thing he reminded me of, he was not giving up on Phoenix!

A little history: Before we got our amazing gift of this beautiful little boy named Phoenix, we had lost a baby. Our local Dr. was wonderful. Well when I first got pregnant with Phoenix things did not go well at all, several times we were sure we would never hold a baby. I remember one day sitting in his office in tears waiting to for him to tell me awful news. God had a different plan. Our little baby was still holding on, against all odds. Dr. S knew my mind was in overload and that I couldn't take a lot more. That day he told me he was going to fight for the both of us for awhile, that he wouldn't give up and would stay positive! But then reminded me that I would eventually be ready to take it over myself! He was great and we got the amazing Phenny Man!

After Phoenix had surgery, he was the first person I needed to talk to! How could Phoenix possibly have CF? I didn't understand, I called and he talked with us. (He had not seen any tests, but talked with us about what we told him) When I went home for my one week check I sat in his office and asked his opinion, it was then that he told me from what he had seen he thought Phoenix had CF. He wasn't telling me anything that all the other dr's at Children's hadn't already told me, but for some reason hearing him say it made it true. This was the one dr that fought for me during my pregnancy, and held my hand when I had lost a baby. He never gave up on our family, that day he reminded me that we were only starting the fight! He would be with us every step of the way. I didn't need test results after that, I already knew what they would be.

We have been so blessed to have him in our life, we would trust him to make any decision for our children! We know that he will be the last person standing beside us when everyone else is done fighting! So in case we have not said it lately, Thank You Dr. S! We would have never made it through the last 4 years without you. (that includes pregnancy time!) Thank you for always being true to who you are, thank you for being you!

I promise we will update as soon as we have more news! And I will also update as soon as I have some more of the new family pictures!

I think we got everyone added to Phoenix's private FB page that had sent requests, if you did not get added to the group please leave message!

Phoenix's Journey

2011-02-23T22:50:00.007-06:00

When we started this blog we started it to keep family and friends up to date! Then it turned into a way to meet other families on their own journey's. Well recently we had a scare and were going to leave Phoenix's blog private! Also being private only 100 people could see his blog, this cut out to many friends and family! This is not fair to Phoenix or to the amazing people that pray and support Phoenix on his journey!

Please feel free to always e-mail me and ask any questions at phoenixsfight@yahoo.com or leave a comment here. I did take his medication list down and a few things that gave to much personal information out. If you ever have a question about his meds or anything we are doing, please feel free to ask.

To that one special person that decided calling our house and e-mailing nonstop, thank you for your concern but please follow Phoenix's blog like everyone else. Leave any questions you may have and if I can I will answer them. Do not call our home or e-mail be 23 times in one day when I have not responded right away. My children are my focus so I can not get on the blog everyday.

For those of you that have me as a friend on Facebook, if you would like to get linked to Phoenix's page there please send me a private message and I will get you invited. During these next few months Phoenix is going to be on a new journey and while at the hospital I will update FB from my phone, and the blog when I can get to a computer! I promise to do it ASAP!

So on to now! Phoenix got his CT done, without sedation! Oh Yeah! That's my big boy! We had an amazing nurse and child life specialist! They took a few extra minutes playing with him and he did great!

Alright guys drum roll please, guess who joined the 30lbs club! Oh yeah, party on! That's right this chubby little man weighs 30.5lbs! Rock on big guy!

Phoenix will be having sinus surgery! It's more complicated than that, but for now until I understand it all more we need prayers for him for a speedy recovery. We also need prayers for the doctors that continue to fight so hard for our little boy. May they be guided with wisdom and know what is best for Phoenix!
I hope you enjoyed the pictures! Of course Tiffany did an amazing job! Look up Tiff's Touch Photography on Facebook, you'll get to see the rest of the pictures soon! Tiffany you do wonderful work, thank you for helping captures our kids in pictures!

Today

2011-02-23T00:02:00.002-06:00

Still processing everything that happened today! Not news that we wanted, and some things we did not expect.
So tonight only good thoughts! Phoenix did his CT with no sedation, the nurse and child life worked with him and he did amazing! Way to go big guy! Drum roll please.....our chubby baby weighs in at 30lbs! Oh yeah, he's a member of the 30lbs club! I promise to update again soon after we talk with the specialist more, surgery is going to be needed.
Right now we need lots of prayers, for Phoenix to continue to show his amazing strength! To show the doctors that they may know medicine but they don't know our little boy, we will never let him be a statistic! We named him Phoenix for a reason, and he lives up to that name everyday!

Remember to hug those that mean the most, and tell them how much you love them everyday!

Tomorrow

2011-02-17T21:44:00.002-06:00

Tomorrow is the day Phoenix's blog will go private! Like I said I am sorry for those that we will miss, I have a list of everyone that asked for invites so you should have those tomorrow! If not please let me know at phoenixsfight@yahoo.com
Give me till tomorrow night to have them sent out, but you should have your invite by then! Thank you to those that are making this transition with us, it truly is what is best for Phoenix. We pray this will be a short term thing but for now it is what is safest!
If you did not get your e-mail to me, you can still leave it in the comments area. Your e-mails will not be posted public.

Going Private

2011-02-13T18:57:00.002-06:00

This blog is going private! If you would like to continue to follow please leave me your e-mail address and I will send you an invitation. (Your address will not get published in the comments) Once the blog is private I will explain what is going on. I apologize to the amazing people that I will get lost do to this, but I have to protect my child.

Not so hot baby!

2011-02-08T21:41:00.003-06:00

Well little man is not feeling so well yet again! Even after 3 weeks of antibiotics he is even more miserable! He is completely congested and complaining of ear pain again!

His CT is scheduled for the 22 and then we go from there.

Helping!

2011-02-06T10:04:00.002-06:00

Big brother Willy asked if he could help with Phoenix's treatments this morning.

The one thing I have been strict on is making sure that the other kids do not feel obligated to do any medical care for Phoenix. When they ask I always let them help, and the watch and entertain Phoenix a lot!

So this morning when Willy asked I said are you sure. Willy said, "Mom I want to help Phoenix too." I love that kid!

Guess Who?

2011-02-04T19:31:00.001-06:00

Honoring Nicole!

2011-02-03T18:46:00.000-06:00

Remembering Where We Started

2011-02-01T15:52:00.001-06:00

Sitting back and thinking today where we started! This was the first video we made of our journey with our miracle boy!

Another!

2011-02-01T01:36:00.002-06:00

Another amazing video from my Australian friend! She has such amazing kids! Listen to what the little sister has to say, it's unconditional love!

Make an on-line slideshow at www.OneTrueMedia.com

Life

2011-01-30T00:45:00.002-06:00

Things in life always happen for a reason, a lot of this we don't understand but I truly believe it's all a part of the master plan!
Recently I've had this terrible feeling of loneliness! I have all these amazing people around me and yet I still felt by myself! At first I blamed it on the recovery time from my hysterectomy, and then on the idea of Phoenix needing another surgery. I've gotten so used to people wanting to hear that Phoenix is doing great that it's what I tell everyone! Please don't get me wrong, from where we've been in the past he is doing good. But we did 3 weeks of antibiotics and here we are in the same boat again, he struggling to breath and his head is congested! Oh and we are at the start of yet another wonderful ear infection, this will be number 7 in the last 3 months.
When I started blogging I met some amazing CF moms/dads as well as CFers that have helped me to understand and continue on this journey! Over the last month I have ben blessed in meeting some amazing Mom's on facebook! There have been a few nights where I am almost in tears and not knowing where to turn, I flip on the computer and with in seconds they have me smiling and laughing! Just the other night Dennis asked what was going on, I was laughing so hard my stomach hurt and I had tears rolling down my face! I wish were not continents apart and could meet in person, but since that is not possible please know what a blessing you have been in my life! This past month you guys have helped in some pretty dark times!
One amazing Mom, LeeLee made a video over her 2 beautiful kids! Her little Joel is a fighter! So get some Kleenex ready this video will show you one families journey to saving their CF warrior!

Howdie

2011-01-18T22:44:00.003-06:00

Sorry the picture is so dark, he fell asleep and looked so innocent! Have you noticed the only time here lately I use the "innocent" word is when he is asleep! While I love this little boy, all I can say is WOW!!!! He'll be a teenager soon if he grows up the way his attitude has! LOL!

Tonight was a night of first for Phoenix, he attended his first creative movement class! He LOVED it! I was worried with his age whether he would be ready, while you could tell he was the youngest one in the class he stayed right there with everyone! When it was all over we got several really good coughs, so it's working! The exercise is great for him, just what the doctor ordered! When it was time to leave, well let's just say Phoenix was not ready! He kept crying "I want to stay with my friends." Of course I was the terrible mother saying no it's time to go!

We are on week 2 of antibiotics and he's doing much better! I think I can even safely say that his nose is a little better! Oh, and he's eating! Yes, that is right he's eating great! Just the other day he was kind enough to pick the tomatoes, onions, and I think it was peppers of his nurses sandwich from subway! I think if we let him Phoenix would live on fresh fruits and vegetables!

As for me, I still have not been released back to full time work yet! The doctor told me by Feb. 1 I should have the go ahead! Healing has been a chore, but that's life!

The one thing I had not shared was that right before surgery one of my best friends Heather passed away at the age of 32 for ALS. (some of you will remember her from her blog) Going into surgery was the hardest thing to do, I wanted to be there for her family and rest of her friends! I think a big part of my healing has slowed down health wise as I've slow come to acknowledge this huge loss. Heather was one of the original starters of Phoenix's Poker Run, and was always willing to help a friend! She fought so hard for Phoenix and all his CF friends! She was an amazing person and friend

Police Charge Mother in 3-Year-Old Daughter's Death

2011-01-14T23:43:00.002-06:00

NEW INFO: Police Charge Mother in 3-Year-Old Daughter's Death

Putnam Mother Arrested on Child Neglect Causing Death Charges - WOWK-TV - WOWKTV.com

http://www.dailymail.com/News/PutnamCounty/201101131467

An innocent 3 year old little girl with Cystic Fibrosis died due to her mother's laziness! Over 12 reports were made to CPS not only by family members but also by doctors, where was the protection for little Ashley? Little Ashley went for months without medication and proper care from a physician, while her mother went to 9 different doctors and filled narcotics prescriptions. We need to help get Justice for little Ashely, here is how you can help!

CLICK HERE! We are getting as many people possible to contact Justice by Nancy Grace. Let's get some media attention on the fact that medical neglect is child abuse! A 3 year old died while CPS continued to receive reports, who ever investigates CPS???

Next! Click HERE! Let's contact the Governor of West Virginia and demand an internal investigation be done!

Please help get justice for Ashley, something her mother and CPS could not provide!

Big Boy

2011-01-14T21:54:00.004-06:00

Yes, that is Mr. Phoenix holding on to Big Sister Emma's hand as he has his first visit with the dentist! He did great! When all done Dr. R took the kids outside and did a special balloon release! Now to sit and wait to see what happens!

Yes, that would be Phoenix pretending that Nurse Becky is his reindeer! He is still in the Christmas spirit and seeing carols! What a crazy kid!

Well the antibiotics seem to be helping some! Right now we are struggling with chapped skin from the cold! The big issue is when we do a treatment it seems to irritate it more, so any CFers or moms have some suggestions I'd love to here some!

As I said he's still in the swing of Christmas, it hasn't been as bad since we hid his Santa outfit and bag! I was really starting to worry! LOL!

Right now we are struggling with the decision about preschool next year, Phoenix really needs to be out and socialize with other kids but all the germs worry me! I know he can't be in a bubble and I don't want him to be but school is germ central! It scares me with the number of kids sent to school sick everyday!

It's hard to believe that my little man will be turning 3 soon, where has the time gone? Not so long ago he was my baby needing me for everything, now he thinks he can do it all on his own! :(

Exhausted

2011-01-03T10:23:00.002-06:00

Well let's just say we are all exhausted around here! Phoenix started a 3 week course of antibiotics and is scheduled for a CT in February. They did say they will have to sedate him for this, so I'm a little worried about that. His sleep study showed us several things that we already suspected! So we've added some new meds!
I am slowly getting back on my feet from surgery, but my poor baby does not understand why mommy can't pick him up! It's so sad to see those little eyes, and he cries pick me up! I keep telling him soon buddy!
Of course his favorite part of the holidays was handing out presents! He was so cute! He could have cared less if he opened a single gift, the thrill of handing them out made him happy! Phoenix sang Christmas Carols and passed out all the presents! He's such a good little man!

Guess Who???

2010-12-22T19:37:00.005-06:00

Phoenix had fun delivering presents to all his friends at CMH! He loved dressing up and telling everyone Merry Christmas! He was a big hit, as well as I love that he is learning to give back!

Information

2010-12-10T20:00:00.002-06:00

Thank you to another CF mom , Hughes Family, for sharing this video, it's filled with some great information on what is being done in our fight for a cure!

Odds & Ends

2010-12-10T15:17:00.007-06:00

Imagination

2010-12-07T20:17:00.002-06:00

Sorry this is a cell phone pic! This is his version of a Santa beard made out of tape! He's so funny!

Well he ran a fever all day today, and guess what right ear is yucky again!

Sorry for short post, but thought I should share a picture of our little make shift Santa, he has such a great imagination!

Frustrated

2010-12-06T21:02:00.003-06:00

This poor little man is back to not feeling well again. Of course it's about that time, he's been off antibiotics for a week now. He's so congested, his little eyes are red, and he's running a fever of 101.9. (Next up will be another ear infection, anyone want to put some double stuffed oreo's on it? I know that sounds bad but this routine is starting to get set in stone.) I wish I could get a specialist to listen to me, he's miserable and I'm tired of watching him like this.

Of course with not feeling well comes not eating. So on top of everything else he really didn't like getting extra bolus feeds today.

I really need to get some cute pictures of him wearing his Santa Suit! He loves it so much! It's so cute watching his imagination work! Who else can turn a laundry basket and a rocking horse into his sleigh? The little twinkle in his eyes shows me that he is just full of that special Christmas spirit. For him it's not about the presents, it's about that magical spirit of season.

I will try to get some Christmas spirit pictures up soon!

This holiday season!

2010-12-02T22:31:00.000-06:00

Sharing from another CF mom!!!

2010-12-02T21:58:00.001-06:00

Before winter!

2010-11-28T13:12:00.002-06:00

Every year before we hit the cold and flu season hard core I try to get the house cleaned from top to bottom! (It puts spring cleaning to a whole new level!) This year, I've drug my feet! Uggg... the thought of getting it all done just makes me tired!

For some reason in my head I continue to think if I get rid of all the germs it will help cut back when winter is here! I put the germ-x by the door and all the Kleenex boxes! Make sure extra soap is in all the bathrooms! (Switched over to the automatic soap dispensers to cut back on germs!)

So with snow in next weeks forecast I figured I should get this show on the road! Phenny Man headed to grandma's house for the weekend, and I made it a pajama/cleaning party! So far I've mad it about a 1/4 of the way through my list.

Phoenix is still struggling with his allergies, I'm still not sure what else to do! Right now we are being told to wait until all the reports from the sleep study are completed! He's on antibiotics for an ear infection right now, so of course he's feeling better! (Still stuffy, but feeling better) I can't wait to show you some new pics! Phoenix became the very proud owner of his own Santa Suit! You can just about guess how happy he is!

Happy Turkey Day!

2010-11-25T07:49:00.002-06:00

This year we have so much to be thankful for!
As we continue down life's path we question the twists and turns, and at times take leaps of faith that everything will work out!
This Thanksgiving I am thankful for knowing that we are right were we should be! That this path we are on we meant just for us, and that in the end everything will be perfect! I am thankful for my family, friends, and my wonderful bloggy family!

Happy Thanksgiving! May your day be filled with love and wonderful new memories!

All Done!

2010-11-21T09:55:00.003-06:00

Phoenix got his sleep study done on Thursday night! We were talking to sleep clinic that morning and in for our study that night!

Phoenix did amazing! He's such a strong little boy! We have heard a few things back but the rest will take a few weeks! So now we will wait and make adjustments as more information comes in!

Phoenix is still severely struggling with his sinuses! Poor little man is so congested, and yesterday another wonderful ear infection. So now I wonder if these ear infections can be caused from his sinuses not being taken care of. (Yes, we got tubes several months ago and adenoids taken out.)

Well today is a busy day so we'd better get things going!

A weekend of firsts!

2010-11-14T20:10:00.003-06:00

What a great weekend! We went to Lake of the Ozarks with Family (and enjoyed their beautiful cabin) and just relaxed. This has been our first real trip since Phoenix has been born! (Let's say we learned a lot of Do's and dont's. We've done medical traveling but not relaxing traveling!)

* Phoenix got to ride on a boat!

* Meet new family!

* Dance with a pretty girl! (He didn't even get her name, but boy did he flirt)

* Eat at a Lambert's

* Ride in a paddle boat

What a weekend of memory building! I wish we had more time to enjoy the beautiful area. The one thing I do have to say, it was so much work getting ready and being away from home. We had to set up a entire new area for treatments, and during each day would have to stop to do more treatments! Of course being on TOBI right now makes it all longer!

We are still struggling with sinuses! All the way home he fussed that his nose was hurting. We are doing sinus rinses twice a day, on top of zyrtec, and nasonex. I'm so frustrated. I know it's his sinuses, I just have to figure out a way to get someone to listen. He's gotten tubes put in and adenoids out, we've seen the sleep specialist, and tried stopping night feeds for a few days. Nothing is working, and we can't keep him off feeds his weight has started to go down. So anyone that has any helpful tips please let me know! I'm going to update his med list so you can see what he's on.

Well the week is full and the days are way to short, so I should get started!

Cheese

2010-11-06T18:13:00.002-05:00

Here, Here

2010-11-05T18:08:00.000-05:00

Sorry for the lack of posts, it's been one crazy month!

Little man's cough was still not getting any better! He ended up with an ear infection and several nights of nothing but coughs! Uggg.....So after talking with CMH he started his TOBI early. He still sounds very horse and has a tight cough, but not as bad as it was.

We did a little Trick or Treating this year! He loved it!!!! The idea of getting candy for just talking was something he loved! I have to say I think he was the cutest spider I have ever seen.

He still has a terrible obsession with Santa Clause and Rudolph. He would say Trick or Treat, get his candy, and follow it up with a Merry Christmas to all! I'm starting to think he may need counceling as a gift for Christmas!

I can't believe how big our Phoenix is getting! He's carrying on complete conversations, asking questions, and exploring the world on his own!

Tonight we journied out and got him a winter coat, his buzz light year helmet stocking cap has already gotten lots of excitement!

For all the amazing Dad's out there!

2010-10-09T09:06:00.001-05:00

My new theme song!!

2010-10-08T21:03:00.001-05:00

Sleep Baby, Sleep!

2010-10-04T19:48:00.002-05:00

Well little man has a cough again! Ugg.... and we've only been off of TOBI for 4 days!

We venture to KC next week to see the dr's! Guess we'll see how things go!

Sorry for the short post, but just got home from work and things are crazy! I did get the pictures from the wizard of OZ's onto FB, so be sure to check them out!

Last day to vote!

2010-09-30T06:53:00.000-05:00

If have a cell phone please pick it up and text 102534 to 73774. Help babies with CF Breathe Easier!!! Please help spread the word. This is the last day to vote!!!

MIA

2010-09-28T19:01:00.004-05:00

Sorry for being MIA. I ended up in the hospital last week, and thank goodness for my wonderful friends and family that stepped up to help out with the kids.

Phoenix has been busy enjoying the wonderful weather! He loves being outside and staying busy! We are working on potty training, let's just say Phoenix has his days! Thought I should give you a movie update: we are still stuck on Christmas movies! Santa, Rudolph, and Frosty the Snowman are still being played in full force! I figure when Christmas comes around we will celebrate all the other holidays!

Phoenix has an all day tripped to CMH on October 4! We will get x-rays, blood work, see CF, and also see the ENT. It makes for such a long day, but it's nice to make as few trips as possible! We are almost done with our month on of TOBI, we'll just get used to not having it when it will be time to start again!

Big brother Willy had his first tackle football game, which I missed. :( I guess he was awesome! He really seems to enjoy it!

Ryker is busy with Boy Scouts, he loves all the activities!

Miclan just finished up her cheerleading camp!

Emma is busy getting used to her new preschool! She's so great at pretending to be shy, but watch out she'll come to life soon!

I was to start work part time this week, but with just getting out of the hospital on Monday I have a lot of catching up to do. I know tomorrow will be a full day, let's hope I can make it through all 8 hours!

Life is crazy, but not sure we would know what to do if it wasn't!

I promise updated pics coming soon, it's been to long! He continues to change everyday!

What do you do?

2010-09-21T20:08:00.004-05:00

The thought of life changing again is really starting to sink in! Let's just say my nerves are shot! The unknown is not something I do well, and boy are we heading into a lot of unknown. I'm a planner and right now I don't know how to plan anything. The insurance company is starting to deny just about everything! As you can tell we have become such good friends that they even have their own speed dial button!

As Phoenix's journey continues to grow and change the one thing that remains the same is the feeling of being alone. Please don't get me wrong, I know my husband understands, but we live in such a small area that CF was not something people new much about. Everyone has their own journeys and ours seems to be filled with roads that are full of detours, curves, and the occasional pot hole! So tell me whether it's CF or another journey how have you handled the changes in your life? Does the feeling of being all alone ever overwhelm you, and if so what do you do?

Tonight was a struggle with the Phenny Man! He fought his treatments and cried during most of it. It breaks my heart that he will never know a day without medications and treatments, or to have one day to be 100% carefree!

How do you address treatments and medications with yourself or your child? Are you flexible or make them non optional?

Sorry for such a negative post, I guess tonight I am looking for some direction from my bloggy family! Hugs and Love!

Enjoy!

2010-09-21T10:43:00.000-05:00

New Stages!

2010-09-20T20:16:00.004-05:00

* My Best Friend

* I love you so much

* But why mommy

* Where are you

* I don't like that

Yes, these are the new fun stages that we have started with Phoenix! Tonight he said, "Nikki, where are you. I hear you, I no see you!" Alright Mr. Phoenix you are 2 years old stop acting so grown up! And of course he doesn't like anything, it doesn't matter that he just ate it five minutes ago or played with that toy just last night! At this time and place he no longer likes it!

In one moment he tells you, "My treatment makes me feel better" or "I do my treatments everyday" and in the next moment he is screaming to run the other direction. He HATES being hooked up to his g-tube, he will wake up crying at night telling us, "me no like it." I still worry that part of this could be issues from the surgery, we are still not up to full feeds at night.

The one thing I can still reassure you on, he is still loving his Christmas movies! Yes, here we are about ready to have Halloween and we've been stuck on Christmas movies since last December! So I think it's only fair come December we watch Easter, Thanksgiving, or Valentine's Movies! Santa will be officially outlawed and all the other Holiday's will get their celebration!

We've met several more new bloggy friends, and I can't wait to read more of their journey's! So for those newbies here Welcome! Be ready this is one crazy adventure!

Little did I know

2010-09-19T21:17:00.002-05:00

Little did I know that when we started our journey with Phoenix all the new titles that we would take on! * Doctor

* Nurse

* Insurance Adjuster

* Investigator

* Researcher

* Fund Raiser

With all of these titles it sometimes seems like the title of Mommy/Daddy get knocked to the side.

I remember the first time I blogged about being able to lay in my bed and take a nap with my frail little boy! I was always so scared from the wires and his breathing to ever try it. Then one day after a feeding he fell asleep in my arms and we napped. It was the best sleep I had since he was born. It was the first time I felt some "normal" in our lives. I was enjoying the amazing child that I had been blessed with! That was the day I learned I couldn't let CF take away the little things in life. Those moments that put a smile on your face when you think of them and make your heart happy.

Little did I know when we started this journey I would find out that I was not wonder woman! I can not keep up with 6 kids (and all their activities), a full time job, and fighting with the doctors/insurance companies. The bills continue to pile up and the rug continues to get pulled out from under me.

So as this journey has gone on slowly I have watched my health decline. My stress level has continued to raise and my energy is gone.

So with the support of family, friends, and my wonderful boss I will be working part time in a few weeks! I've struggled keeping up with a full time job, doctors appointments, and staying on top of the insurance issues.

I'm still not 100% sure how we will handle be able to handle a cut in income, but I also know that if something doesn't change my body is eventually going to give out.

I can't wait to spend more time with my family and enjoy more quality time with Phoenix! We only get one chance to do things right, and I don't want any regrets!

So little did I know that when this journey started my entire world would be flipped upside down! That each and every day would be presented with it's own set of battles. (And that is just not with Phoenix, life is crazy with 6 kids!)

Little did I know that this journey would teach me some of life's greatest lessons, and help me to appreciate every moment we have!

Our new favorite

2010-09-19T14:01:00.002-05:00

Yes, this is Phoenix with his new favorite piece of equipment! Phoenix loves his new E-Flow! He says my fast treatments! Down side, when he's done with one of his meds it must go back. :(

Calling all CFers and CF caregivers!

2010-09-18T17:04:00.001-05:00

Want to earn some easy cash, just by taking simple surveys about your life/raising a child with CF? Call (888) 947-2339 and press 3 at the menu and make sure to tell them that I referred you! You'll earn $50 just today! Takes 5 minutes! Please remember to tell them Angela Entrikin referred you :)

Amazin

2010-09-11T08:38:00.003-05:00

Have I told you all how amazing I think this little boy is?

So to start of we've been off antibiotics a week and the sinus issue is back in full swing, he's not running a fever yet but I can see where this is going. So let me tell you what we started this week, sinus rinses! Oh yes, my two year old little boy is doing sinus rinses with no problems! He says, "make me feel better." He doesn't fight, argue, or fuss! He continues to amaze me everyday.

Eating has been a huge issue for us this week, Phoenix has entered the I don't like that stage! Yes, I know every mothers favorite stage. Before you even get the food out he's saying, "me now like that." Hello, you haven't even tried it, or you just ate it yesterday!

Each day his sentences are getting longer and he looks a little bit older. Where did my baby go? This little man that now stands in front of me has a mind of his own and a willingness to succeed at everything. (even if it's something he's not supposed to be doing) Part of me fears that his experiences in life make him far wiser and older beyond his years. This little man has gone through more in his two years than all of my other children put together!

So now the big topic of discussion, and I could really use some input. Preschool next year? I worry about all the germs and other things he can pick up by going. Winters are tough enough, adding a room full of kids to the mix can be horrible. All my other children went two years. I always looked at the first year as a time to socialize and get used to being outside the home, the second year was all about education. (Phoenix is very smart!) I feel torn between letting him go, and protecting him another year. I feel either way we go I will feel guilt. I just don't know.

Yes, that is our big boy!

2010-09-06T21:29:00.001-05:00

Words

2010-09-03T20:53:00.001-05:00

It's not the video, but the words that are being said! Please take a moment to enjoy!

Just Wish

2010-09-03T20:32:00.003-05:00

Click HERE to read the story of one local CFers wish, and the journey to make it happen.
Click HERE for another coverage of her wish!

A busy week!

2010-08-29T11:16:00.004-05:00

As the days go by, I continue to lose track of what is going on around me!
Between the kids being back in school, extra activities, working full time, doctors appointments, fighting with insurance, and all the other wonderful day to day stuff I have no idea what I've done or if I've started.
We had 3 birthday parties this weekend, girls night on Friday (which I really needed), and tonight a BBQ with some amazing friends!
Willy has started tackle football, and is learning the true word of "commitment" to a sport! So far so good, and he seems to enjoy. (Not sure mommy was ready for a full contact sport)
Phoenix went roller skating this weekend, and loved it! He's growing up so fast. I just wish we could get this weight thing figured out! He's eating but not putting on the pounds! Uggg...another effect of CF. Tuesday we will venture to CMH to for a few appointments! Those days are so long. We have to get up extra early get treatments done, the appointments last all day, and we don't make it home till before supper. I wish I could find a way to make things easier for him! He does so well, but it's a long day for him.
Miclan had her first big girl sleep over! She's always been with family. Let's just say the giggly girl stage has started, she didn't even make it through the door and wanted to know when she could go back. Where has time gone?
On Monday Emma will start her new preschool, which she is so excited about! It's hard when all the other kids start school and she's still waiting for the big day.
Ryker has been busy making all kinds of new friends. He loves school and loves that they have a hamster!
Well that is a fast catch up! I will attempt to better at staying in touch!

Heads up!

2010-08-26T18:44:00.002-05:00

Do you ever get the feeling that you have so many balls in the air that you are not sure which one is about to hit you in the head?
As we have ventured on our journey more and more balls continued to get tossed up without any other coming down?
So give me your tips! How do you make life easier for you and your family? What helpful hints can you share to help us crazy moms?
I found a website called the FlyLady, so far it's had some great tips! If you have a moment check it out! Click HERE! I can't wait to hear some of your ideas!

Love helps those!

2010-08-26T14:38:00.001-05:00

Take a moment to listen to the words!

New friend!

2010-08-25T09:42:00.000-05:00

We have met a new friend named Jesse! He has an amazing sight with a lot of wonderful/helpful information. Click HERE to visit his sight!
I think one of his posts that really helped was making CF a little easier! Anything with those words I'm willing to read! He had a lot of great tips! Click HERE to read that article!

Still chuggin' along

2010-08-24T17:55:00.003-05:00

Well as you can see from the previous pictures, Phoenix lost his curls. Sorry, ladies! It had started getting in they way during treatments and kept getting pulled during procedures at the hospital. So it's official I have a 2 year old little boy that runs the world!
Tonight he is sitting in the rocking chair with his toy computer pretending to work/blog! He's so funny to watch, you'd think he had Internet access!
Well our little fighter ended up in the ER last week! He got IV steroids, antibiotics, and fluids. We couldn't get his fever under control, eating was not happening, and his head was so congested. Of course our local doctor and nurse was right on top of things for Phoenix! They got him in and out in no time! He is now doing an extra 7 days of antibiotics to kick whatever is going on! So far it seems to be working, down side he's still congested!
Another issue right now is weight, little man just does not seem to be putting on the weight or even holding it. He's slowly been going back down again. So we are working hard and now that he is feeling a little better we hope to pack on some calories!
Alright so as we have all learned in the world of CF we celebrate the little things! So celebration #1 the latest cultures came back normal flora! Oh yeah!!!!!! So we will do every other month on TOBI until we know for sure we are all clear!
Another big accomplishment for this week, he went all day Sunday with no accidents! Can we say go big boy! He's starting to catch on to this potty training thing, for once I can say something is going easy for us! (Knock on wood!)
Things have been crazy as all the kids are back in school! Well Emma will start on the 30th, she is not happen about everyone else leaving her! I continue to remind her that in her own sweet time she will be ready for summer again! Willy is starting tackle football, running for re-election on student council, and going strong in boy scouts. Ryker has tackled fourth grade like a champ! He loves the fact there is a hamster in the room, which I might add his name is double stuffed oreo! Miclan is slowly learning that first grade might not be that bad, she still unsure because her best friend is not in class with her! Oh yes, and the idea of homework every night is not setting well with her either!
Nikki is back to college and hard at work! She is such an amazing big sister, she is always sure to make the time for the little ones! They love her so much!

Pics!

2010-08-23T18:11:00.002-05:00

'Letters to God' - Official Movie Trailer 2010 [HD]

2010-08-22T18:46:00.000-05:00