Tuesday, December 31, 2013

Another teenager!

Happy 13th birthday bub!

 A day that you have been waiting for forever, you are finally a teenager! 

You are such a goof ball. Your difficult and wonderful. You are smart and loving and talented. You have such a huge heart. You love every animal you see and want to be friends with every person you meet.  

The day you entered our lives was a wonderful day. My little tax deduction that came just in time. My New Years Eve baby. 
Someday, unfortunately to soon for me to like, you will love that you were born on New Years Eve. Everyone in the world celebrates your day with you!  

 You add so much joy and love to our lives. You are a nut. You are moody and unpredictable, but in the best ways. There are days when I really want to kick your butt, but then you do something like sticking gummy bears to your upper lip to give yourself a "bear-stache" and we can't help but laugh our butts off. 

Some days I truly believe that you have an old soul. You are far wiser than most of your peers. You amaze me. Every year we are blessed enough to celebrate your birth is a gift from God. 

So my little Mach-a-doodle, on this day that you have waited years for we will celebrate your 13th birthday. And we will keep praying and hoping that we will have 100 more years to celebrate you!

Happy Birthday Bub!

Monday, October 21, 2013

What a birthday!

My beautiful baby girl is celebrating her 11th birthday today! 

It is hard to believe that is has been 11 years since our lives changed so much. Ki'a is our last child. She came into our lives in a whirlwind of excitement and fear. Her birth story is one for the books (even the doctors said so!). This little 6 pound 5 ounce 19 inch long tiny little thing just about killed me and had a rough start herself. I spent the first 4 days of her life in ICU after my uterus ruptured during her delivery. I didn't get to hold her, or feed her or even have her in the room with me unless someone else was in there with us. It was awful. But once I got my hands on my baby girl that was all forgotten (not really, but you know what I mean).

Now I look back on the past 11 years with tears of joy in my eyes. This little girl changed our lives so much. You take so much for granted when you go through life without any major problems. All it takes is one life-threatening event to make you open your eyes and learn to cherish all the little things.
Halloween 2004. Almost 2

This girl was a force to be reckoned with from the start. She has always been outgoing and opinionated. She wanted things done her way and no one else's. She is our only daughter, the 1st niece, 1st granddaughter, she was (and still is) the PRINCESS.

6th birthday


She is a ham. She will do anything to make you laugh. She is a blonde through and through and we pick on her a lot about it (all in good fun). Some of the things that come out of her mouth are the most air headed things you can imagine.

age 9

She is my social butterfly. She loves making friends and meeting new people. She loves cheering, dancing, gymnastics, singing. She is so creative. She is always making up songs and dances and drawing. 

Her 11th birthday slumber party

Now she is hitting those pre-teen (tween) years and so much is changing. Her looks. Her attitude. Her personality is blooming more every day. 

This year we decided to take her to her very 1st concert for her birthday present. Her and her best friend got to go see Selena Gomez at the First Niagra Center in Buffalo NY.

What an experience that was. She had such a great time. And it is a present she will never forget. 

So on this day, a day that will always remain a wonderful day in our lives, I want to wish my amazing, beautiful, talented daughter a very happy 11th birthday. (and get my self a HUGE bottle of wine to help me get through the next chapter of her life....PUBERTY)

Monday, September 23, 2013

Ah the joys of CF life

As most of you who read my blog know my son has Cystic Fibrosis. This is normally very manageable for us (as we have dealt with it FOREVER). But there comes a time in CF life when the unpredictability of the disease deals us a low down dirty hand, and it comes in the form of a wonderful bacteria called Psuedomonas Aeruginosa. CF lungs are full of crappy mucus all the time which makes them a great little breeding ground for this nasty little bacteria. It loves to reek havoc in CF lungs. 

Most CF patients are infiltrated by this little culprit early in their lives, before the age of 10. And once it takes up residence there is virtually no getting rid of it. It just stays there and decides to show itself at the crappiest times. Once they culture (a suptum culture taken either with a throat swab or coughed up) psuedomonas a whole new world of worries open up for us parents/caregivers. Unfortunately there is no blocking the transmission of this wonderful bacteria. It can reside anywhere, in the ground, in your dirty sink drain, in the mold you don't know you have growing in your house, on a shopping cart at the store....you get my point IT'S EVERYWHERE!  We do our best to keep our kids from coming into known contact points (other CF patients), but even our non-CF kids can carry this little bacteria home (and they just have common cold symptoms if anything) and pass it on.

We have fought this battle before. Back in 2006-2008 Zach was infiltrated by the little bugger. He was hospitalized 3 times for complications from it, at one point part of his trachea had collapsed because of it. But, miraculously, we snuffed the little pest out. We have not cultured positive for psuedomonas in 5 years. So imagine my surprise when I get a call from our CF clinic Friday telling me the little nasty has decided to show itself once again in my little mans lungs. Now I knew he was getting sick. We thought it was allergies or a cold. He wasn't coughing too much more than usual so I wasn't at my "freak out" point yet. (Let me add here, we have "freak out" points at least once a year when the MRSA in his lungs decides it wants to get full blown and nasty on us.) So the call comes in and I instantly hit "freak out" point. This is not a fun point for me to reach and Zach tends to hate it when I reach it. 

So now the real fun begins. Another trip to the CF clinic to be trained on how to use the new Tobi pod-inhaler (before it was in nebulized form. Tobramycin is a heavy duty antibiotic that is used to treat psuedomonas) and EXTRA precautions at school now. In the past we haven't had to worry about the implications of psuedomonas at school because Zach was the only CFer in school. Now we do. There is another child in his grade at school who has CF too. So I had to call the school nurse, let her know whats going on and then make the dreaded phone call to the other parent (because we talk and the kids are friends). 

Let me tell ya, nothing makes you feel like more of an ass than having to call another CF parent and tell them that your child has a potentially fatal infection that spreads super easy and super quick to other CFers. But I am concerned about her kids health as much as my own, so I made the call. And wanted to cry when I told her. See Zach isn't the only one not feeling well right now. So now I have her freaked out and worried and this other kid too. But I had to do it. And I know she would show me the same consideration.

Now, our kids know they can't be within 6 feet of each other without masking up. They are not allowed to be in classes with each other and they both know what precautions they need to take with each other. The kicker with having 2 kids in the same grade at the same school... you have to think of EVERY possibility...do they cross paths at lunch, are the lunch tables being cleaned they way they should, what about gym equipment, are we making sure they are not touching the same gym stuff, and door handles...OMG how much I dread door handles and desks! All of their teachers know to make sure they are not sitting at the same desks, but still this little bugger can live on ANYTHING! Thank God our school nurse is fantastic and the teachers very understanding and accommodating to these 2 kids. 

So, I take Zach up to the clinic this morning to be trained on the pod-inhaler. And while we are there have them check his o2 levels just to be on the safe side because he is worse now then he was last week when we went. I was up 1/2 the night listening to his crappy breathing. Thank goodness his levels are still good. He learned how to use the inhaler. We stopped and picked up tissues (because the kid is coughing up a ton of nice green gobs of mucus) and antibacterial wipes so he can wipe down his desk before he sits at it (which he is not happy about because it makes him stand out), just to be on the safe side. Trying to explain to a 12 year old, who doesn't want to be seen as different, that we have to take these extra precautions so he doesn't end up in the hospital is like ramming your head against a brick wall hoping to break through it. 

Tonight we will start the antibiotic, unlike other illness where you see a difference quickly and they aren't contagious after the first couple of doses, it will take a while to see a health difference and he will remain contagious to the other CF kid. We wont know if the Tobi kicks out the infection until his next culture. And it may not. We may be dealing with this for the rest of his life, which means he will be on the antibiotics every other month for...well forever. WHICH SUCKS! And if the Tobi doesn't help??? Well that means we end up in the hospital for IV's and hope and pray that this stupid bacteria doesn't cause to much damage in his lungs.

Oh how I hate you Cystic Fibrosis!

Sunday, August 18, 2013

My absolutely amazing son.

My son has to be one of the most amazing 12 year olds I have ever met. I know your thinking "ya we all think our 12 year olds are amazing" (and I give you that we all do), but I have never met one quite like mine. I am a little biased...as we all are when it comes to our kids. But when you watch this video of my son testifying to his church you'll see why I think my boy is amazing. For a kid who didn't grow up in the church (we stopped going when he was about 2) he has the most amazing relationship with the Lord. I am often in awe of his love and belief and understanding of his God. He started reading the bible when he was about 4. I don't mean just looking thru playing with the Good Book. He actually read it! He would ask me all kinds of questions that I never had the answers to. We kept saying we were going to get him back into the church since he had such a love for it, but it never happened.

 A couple years ago he was playing pop-warner football and his coach was big believer in church and God and all that. He would hold prayer before practice for those who wanted to join in. And after practice on Wednesdays he would take some of the kids to youth group. Zach immediatly took to the coach and would go with him to youth group. He was in heaven. Then Zach met Pastor Bob, the youth pastor.( Bob is the big man you see at the beginning of the video). He is an amazing man who does so much for the kids in our community. Bob has often told me how amazed he is of Zach. Within a year of meeting Bob we moved...and where did we move...right across the street from him! If was pure coincidence, but it was GREAT. Immediatly he started telling Zach about Word Of Life camp. So Zach had to go. His first trip to camp was nerve wrecking for me. With all his health conditions I was a mess, but I knew I had to let him go. When he came back a week later he was so excited. He went on and on about how he was saved. He was baptized 2 weeks later.

This year was his 3rd year going up to Word Of Life camp. It is his favorite time of year. He LOVES camp. He meets people from all over the country, and some from other countries. This is one time during the year that I think he actually feels like he fits in. He gets off the bus when they come home physically worn out, but spiratually excited.

 Today he told his testimony in front of the congregation of the church he calls home. It brought tears to my eyes for him to stand in front of all those people and talk about God. He knows so much more than I think most 12 year olds do. I really wish I would have continued taping after he was done talking, so you could see the church's reaction and the Pastor's reaction to him. Bob has always told me what an amazing child I have, but when the head Pastor of the church grabs my son and hugs him and then tells the congregation he can now retire because he has found his replacement...there are just no words for it. Pastor Bob went on to tell us how just before they loaded the buses to come home from camp, Zach had all 85 kids from our community gathered around him as he spoke of God, the bible and what he had learned there. AND THEY WERE ALL ENTHRALLED WITH HIM!

Zach is hoping to further his religious experience. When he is old enough he wants to spend 8 weeks at a time up at Word of Life to be a leader/teacher. And he has already decided he wants to do missionary work. To say I am proud of him is an understatement.

Monday, August 5, 2013

Surfing for a cause

On May 15th, 2013 Zach and his sister took part in the main event for Pipeline to a Cure. Them and 13 other CF kids and their siblings enjoyed a day of surf lessons at New Smyrna Beach in Florida. The lessons were free to our CF kids and siblings with a donation of $30 for anyone else who wished to participate. The money raised benefited the Cystic Fibrosis Foundation and their race towards a cure.  Each child was given a rash guard, yellow was for the CF kids and blue for the rest. This was a great way for the volunteers to know what kids has CF so they could follow all the precautions necessary to keep our kids healthy.

 The surf instructors were all people who volunteered their time to help teach our CF kids the joys of the ocean and surfing. These people don't realize what it means to these kids for someone to take such and active interesting in teaching them something fun that is also so beneficial to them. They are true God-sends. Both of our instructors were wonderful Godly people. They both shared with us how important it is to them to help out in multiple charitable events for a number of causes.

 Ki'a's instructor, Holly, was new to surfing herself. She was a wonderful instructor. Ki'a fell in love with her and she fell in love with Ki'a.

Zach's instructor, Tim, has been surfing for a long time. I must say, when I first laid eyes on the man I was happy Zach chose him. He reminded me of my Uncle. He had two wonderful daughters that he brought with him to the event. 

For 5 hours these people took control of our children, had them in the water and on the beach just having a ton of fun. My kids didn't want to spend anytime away from their instructors! And even though Zach and Ki'a have both been on surf boards for months before this event, they learned a TON from the one on one they received.

They both caught some awesome waves. Both on the surf boards and on boogey boards that Tim had brought with him. As you can see my little man is loving "hanging 10" in the water. 
The event had some AWESOME sponsors, who provided gifts for the kids as well as raffle items for the silent raffle that took place (also to benefit CFF). Some of our sponsors included UnderArmour, Sun Bum, Ron Jon Surf Shop, and so many more.

 We had lunch provided by Chick-fil-a and FireHouse BBQ....DELISH!  By the time 2 o'clock rolled around my kids were plum worn out from being in the water and sun all day.

We enjoyed participating in Pipeline To  Cure so much that we plan on doing it every year....Even if it means traveling from NY to FL to do it!

Monday, July 8, 2013

Some welcome changes

I have been MIA for a couple weeks due to a lot of things going on in my life right now. What was planned on being just a short visit back to NY to watch my oldest nephew graduate high school has now turned into a permanent relocation back.

There were a lot of things that led up to this relocation, some that I wont go into on here because they are just to personal to put out there into the internet world. Our biggest thing was we just simply make more money here than we did down in FL. When we moved to FL we thought it would be a great thing. My husband would get to stop driving truck, which would mean A LOT more family time. We did not anticipate that he would not find a job down there that was as financially lucrative as his truck driving (we took a $40,000+ drop in pay OUCH).

Then there are the kids. While our little girl is a social butterfly and can make friends anywhere, our son just doesn't have the social skills to do so (at 12 he has 3 very close friends. (all in NY) It's that whole PDD/Aspergers thing). Moving to FL was pretty devastating to him, he was unhappy and missed his friends tremendously. They were thrilled to hear our decision to move back to what they consider their home town. Literally within 24 hours they were in touch with their best friends and making plans. I love seeing them so happy again. It makes a huge difference in our coping abilities (even mine) to be around friends.

And of course there is my family. While I adore and love my husbands family very much, I am so much happier when I am close to my parents and my sister. They may irritate and aggravate me at times, but it's nice to have my mom just down the road if Zach gets sick again (she's a nurse). I have always found it weird that I (the yankee) love having my family close more than my husband (born and raised southerner) does (not that he doesn't like being near them)...I don't know why, I guess I always that southern families liked to stay close together. Guess that is a misconception on my part. (I hope that didn't come off mean sounding to my in-laws, it wasn't meant to mean anything just an observation on my part).

While at this point in time my husband is still stuck in FL while we get everything in place here things are finally starting to look up again. I immediately was offered my job back. The kids are all registered for next school year, they are attending the summer recreation program with most of their friends. We are spending a lot of time down at my sisters camp on the water. And of course we are all spending time with our friends. We miss Ty and the rest of our FL family, but we are all happy being home again....There is definitely NO PLACE LIKE HOME.