January in a nutshell

New Year's = boring... we were trying to put Gabby to sleep and missed the ball drop by exactly 12 minutes :) and sad because it was our first one without my Dad :(

The Wedding = was beautiful, fun, and everything a wedding should be with one exception.... yeah Dad wasn't there to walk his baby girl down the isle...something I also missed out on and it make me sad to think he didn't get to give either of his girls away :(  He would be proud however that we still had a great time as we focused on Katie and Tristan and the start of their happily ever after. Everyone had a lot of fun, especially watching Tristan and his brothers get crazy on the dance floor :)

Gram's Birthday = what can I say, you would never guess she is the age she was, let alone another year older :) God love her, I hope she passed all those good genes down :)

School = First semester with clinicals, which means $#!+ just got real :) and by that I mean REAL busy, real interesting, real tiring, real backbreaking, etc., etc.

Meg's Birthday = She is away at college, so we didn't get to celebrate together, but I made sure to wish "Meghanie Pooh" a happy birthday (my Dad always called her that, and for good reason lol)

and for an update on each of us:

Steve is doing good, he is still doing jiu jitsu every week...he has yet to have a week where he doesn't come home injured, sore, or somewhat broken, but for some reason he loves it... he's getting better, but still gets his butt kicked at least once a week... it's hard to watch...unless I am mad at him at the time ;)  (relax I'm kidding)

 Josh is also doing wonderful, he is on the honor roll...his GPA is almost over a 3.0, and if he does well enough on his ACT test, he will be enrolling in dual credit next year, thereby doing his last year of high school and his first year of college at the same time. We couldn't be more proud of him :) He is truly his father's son, all he ever wants to do is go fishing...when he isn't fishing he is working out...if he can't do either, he is on his Xbox, so like a typical teenager, the only time we get to spend time with him is usually at dinner lol.

Kaitlyn is doing good. She is working on being more responsible with her school work, and although she battles extreme fatigue, she is doing pretty well with her school work for now. She just had a sleep study, so hopefully we'll find out something to help with the fatigue, if not she'll just keep plugging away :) Her PFT's came up this month, so that is awesome, we are praying that they stay up for her visit in February. She did start her inhaled amikacin this month which she says is the worst tasting one so far, but it is also the quickest one so far.. and you can't win them all :)

Gabby is as precocious as ever. She is as sharp as a tack and getting smarter every day, which isn't always a good thing, as she knows a lot of things she probably shouldn't... but she's 2 and sometimes terribly 2.... such as when she wants to dump every toy she owns on the floor and then tell Mommy to clean it because its messy...not that it ever works, we tell her she has to clean her own mess and she does eventually...but getting her to listen is a chore in and of itself.  The one good thing I can say is that although she is definitely a handful, both my Mom and Gram love their Gabby time, and since they watch her for me while I am in school, she has stopped getting sick so often and so severely as when she was in daycare :)

As for me...I am busy... up to my ears in terms, techniques, and tests. Nursing school isn't easy by any means, but it is certainly worth it. So far I am loving this semester, and yet I am already looking forward to the end of it :)

ok...that's all I have time for :) God Bless

Just a little family update... Christmas was nice... huge as we had a lot of company up between us and my sister's fiance's family. Our Christmas gathering was 20+ people and it was hectic. It was hard though, being our first Christmas without my Dad. It's so hard to believe that he has been gone for 6 months now. This Christmas I shed a LOT of tears. But that is to be expected I guess... and I know my Dad was watching over us wishing he could ease the pain of his loss.

Anyway.. I updated Kaitlyn's caring bridge, so if you want to know how she is doing, you can check that out. A little side note to that update is that we finally taught Steve how to administer her IV meds (something he really never wanted to learn how to do). At first he was uncomfortable and nervous about messing something up, but I was getting so tired I told him I needed him to help at least on the weekends so I could get at least ONE night of uninterrupted sleep. Turns out after just one time he is a pro, and now very comfortable doing her meds... he even volunteered to take over weekend night duty for me! Of course just in time for her meds to be put on hold for a week, but hey it's the thought that counts. Also now I can leave the house if I need to without having to worry about being back in time to do Kaitlyn's infusion, because Steve can do it! It's the little things...lol

The kids all had a great Christmas! Josh got his x-box game, Kaitlyn got her cotton candy maker, and Gabby got a new PINK play kitchen that she absolutely loves! She spends hours just "cooking" and playing with her tea set that we got to go with it.

We also got the kids a trampoline... our motives were not just the fact that they have always wanted one, but being the smart parents that we are, we know it is a way to get Kaitlyn the exercise she needs while actually making her want to do it! So far so good... except for the fact that the manufacturer left out some parts we needed to get the netting up. They sent it out as soon as we called and the parts arrived yesterday so Steve will be putting that up today. I even got up on it and jumped with the girls... it was fun, but definitely more tiring than I remember (I haven't been on one since I was Kaitlyn's age).

Now that Christmas is over, we are just busy busy busy preparing for my sister Katie's wedding on January 3rd! We're so excited for her and Tristan! I am making the jewelry for the bridal party, so that is fun. But we are also running around doing the last minute things... I can't believe my little sister is getting married in less than a week! Both Kaitlyn and I are bridesmaids and Josh is a groomsman... Gabby is the flower girl, and Steve is walking my Mom down the isle... it's wonderful that my sister found a way to incorporate all of us in her special day... the kids (and I) are all really excited! The only sad part of that day will be the fact that my Dad can't personally walk her down the isle (although I know he will be there in spirit). Kurtis will be standing in for my Dad, and that is exactly how my Dad would have wanted it. I know that will be hard on my sister... heck on all of us, but Dad will still be with us.

Anyway... I will be posting a few pics after the wedding... for now I have more stuff to do so I'm signing off...Hope you all have a blessed and happy New Year!

2 Months

Yesterday marked 2 months since we had to say goodbye to my Dad. It seems the more time passes it gets harder as the reality of him being gone truly starts to sink in. A few days ago, I went and visited his house... Gabby and I walked around and just remembered. I drove home bawling, but I needed to feel close to him for a minute... The day before yesterday, right after Steve pulled up in the driveway, I heard someone outside. I looked out the front window and there was a truck that looked like my Dad's truck out front. Then I saw a man similar in build to my father, with a pony tail like my Dad had right before he cut his hair.... for just a second I thought Oh Dad is here, but as I got up to walk to the door I realized that it of course couldn't be him... I was crying before I reached the door. When I opened it to see who it was, the man and another guy with him were pulling away, already leaving. I asked Steve who it was, and he said that it was someone we didn't know at all... he just randomly stopped by to ask if the truck our driveway was for sale... My Dad's truck. Steven told them it wasn't and they left, but how random is that??? As I sat crying on my couch, missing my Dad, my phone started ringing. It was Lauren. Lauren sees my Mom and my sister from time to time, but she hasn't called me since Dad passed. Even though she was calling to see if Steve could help Kurtis, I felt like these things were maybe, just maybe, my Dad's way of saying Hi...

Today after dropping Kaitlyn off at school, I decided not to take the street where Mom & Dad's house is... I am hurting so much I decided I didn't want to start my day in tears.... but as we passed by the street and went a little further, I heard Gabby out of no where calling for Pop-Pop from the back seat... the tears came after all... maybe she can see him, because she was calling for him like he was there, or maybe she just misses him like the rest of us... either way, I know that she is hurting too... we all are.

Later, after coming home this morning, as I looked on Facebook I saw a post from Lauren. She had a dream about a painting estimate last night... Dad was there and the people they were doing the paint estimate for had already picked out a color... bright Orange. The significance of bright orange is this... my father painted the bedroom in his house that had once been Katie's (and also once been Steven's and mine) BRIGHT ORANGE when he painted it... but even more than that, the color of the awareness ribbons for leukemia is bright orange... if my Dad wanted to say hi to one of his best friends who he worked with side by side painting for countless hours... what better way to do so?


It's been 2 months since Dad got his Angel wings... we all miss him terribly. We are happy he is pain free and breathing easy, but we still wish he could have had that on this side of heaven. I love you Dad, keep the visits coming... I miss you so much I can't wait to see you again.

Light Bulb

     I get it.. I keep saying that God has more faith in me than I have in myself... therein lies the problem... I don't need to have faith in myself, but rather faith in him! (Cue the light bulb) I know that we are lucky, and that others out there may have it worse... but these last couple months (not to mention years) have been overwhelming. Starting with the sudden (to us anyway) loss of my father... We had convinced ourselves that the Lord would heal him with a bone marrow transplant if we could just get him to that point... We never expected Dad to develop such a massive and sudden bleed that called him home to the Lord. Just a little more than a month later, and I am still having a hard time coming to terms with the fact that I can't just drive North for an hour and visit him in the hospital... It doesn't seem possible to me that I will never wrap my arms around him for another hug, or that I will never hear him tease me in the ways he always did... How can I possibly miss him SO much and still kinda feel that he's not really gone?
     The loss alone would have been enough to handle, but no Kaitlyn was getting worse again and had to be hospitalized. Her trip to Ft. Lauderdale with her Aunt Steph was canceled because of Dad's passing, but her admission date was kept the same, because Dad's memorial service was June 30th. We went into the hospital on July 2nd for what we expected to be a two week stay that would include a bronchcoscopy and a sinus surgery. She had both done at the same time, and they went well, but her body was a little shocked... she was extremely pale after for a few days, her throat was unbelievably raw, and her O2 sats kept dropping.. they had told us unexpectedly, on our first day in, that Kaitlyn was going to need a port... her veins were shot and they could barely get the mid-line going. Originally it was going to be done a few days after her bronchoscopy and sinus surgery, but they decided her body needed a few more days to recover. When she finally did have the port placed, it went great, no complications, it was awesome. By then, we knew the gram-negative culture was positive, but not sure what gram-negative bacteria it was... we knew she had yeast in her lungs.. they had begun to treat it with the help of an ID doc... and just the day prior to her port placement, we found out she had a third culture come back, and that she had a mycobacterium in her lungs.. although we still do not know which mycobacterium as they take awhile to grow enough to be identified. So after a few days they sent us home on IV anti-fungal meds for the yeast... they are debating when and if to treat the mycobacterium... for now they are holding off. Her PFT's are coming up as the yeast is treated. She's doing ok, but she is still extremely fatigued. She is ready to be done with IV meds.. this is the longest she's ever had to be on them, poor kid... all she wants to do is go swimming, but she probably won't be done the IV meds until the day before school starts.. which is quickly approaching and is less than two weeks away!
     While we were in the hospital, I though Gabby may have picked up something. She started to have her tummy troubles again, and with the symptoms being familiar, I got her in to see the GI doc last week. I haven't even been able to pick up the cups to do her stool studies yet, and last night she developed a fever. It started at 99, but grew to 101 by 3am... I gave her motrin, and she finally fell back to sleep around 5am. We got up early this morning and ran around to the back to school events collecting school supplies (Thank You to the generous people of Charlotte County...) we made a stop at the blood center where I tried to donate to no avail (darn you low iron levels...we'll have to try again tomorrow), and by the time we got home, not only was Gabby's fever back, it had climbed to 103.4!  She is acting okay when the motrin is working, but she is cranky and obviously not feeling well...I am hoping it's not another bacterial infection for her too.
     I am one worn out momma... my heart hurts when I think of my Dad... when I see Kaitlyn struggling with missing him.. when Gabby says "where's Pop-Pop?" or cries and says "oh Pop, oh Pop" how do I comfort her in a way she'll understand? I am physically tired of all the running.. my body is on strike, the fibromyalgia flaring so bad I haven't felt pain like this in a long time... I am about to enter a two and a half year nursing school, and somehow figure out how to make everything fit into my days... to bad cloning is still frowned upon... I could really use another me... or two, to share the work load with.
     So I've been wondering why God seems to have so much faith in me that he feels I could handle all of this.... I realized that two years ago, when Kaitlyn and Dad were both diagnosed, I didn't pull closer and lean on him as I should have... instead I was angry and pulled further away... but I am starting to realize that maybe that's why he keeps piling it on. Maybe he was just waiting for me to figure it out and start coming back to him... saying prayers while keeping my distance just isn't cutting it.

She huffed and puffed.....

Well... we just got back from the pulmonologist... Gabby did great, as expected... but Kaitlyn is another story. She huffed and puffed, but she won't be blowing any houses over.... After finishing three rounds of different oral antibiotics, and now also being on Tobi for the last two weeks to boot.... her PFT's went down instead of up. She's been incredibly fatigued lately, and coughing more so we know something is going on, just not what. We were hoping for the best, but it's official, Kaitlyn is heading back to the joint :( Thankfully we have awsome doctors, and since Kaitlyn's Aunt Steph is coming up next week and taking both Kaitlyn and Josh till the end of June, they have agreed to let her hold off the hospitalization until July 2nd. That means she gets to go have fun for a little before heading back, but it also means we will spend the 4th of July and possibly Gabby's 2nd birthday in the hospital. They will be doing the standard 2 week course of IV antibiotics, but Kaitlyn will also be having a bronchoscopy and a sinus surgery while there this time. We're not happy about it, but Kaitlyn is very excited about spending time with her Aunt Stephanie and her friend Jordan first :) She has also been saying that as much as she doesn't want surgery, she is willing to do just about anything to feel better at this point. Please keep Kaitlyn in prayer, hopefully they will find out what has been causing the dramatic drop in her PFT's over the last year or so, and be able to get her back up at least a little... we're hoping to get them way up, but they've warned us it may not happen... we're placing it in God's hands either way.

(pic from Feb 2012 PFT's)



Prayers for Dad... Please

   My Dad is such a fighter. When he was first diagnosed with leukemia in 2010 it was such a blow to all of us. Here he was the strongest man we knew having his whole world (and ours) change in the blink of an eye. They told my dad he could expect three years of life with his diagnosis, but from the beginning we all insisted there was no date stamp anywhere on him. He has fought back from the brink more than once. For a while he had us so scared, we didn't think he'd make it to last Christmas. He scared us again, worse than ever, in April when he nearly died of a bowel obstruction. He's fought his way back to us each and every time. I think he knows how badly we need him here. We love him so much, we just can't bear the thought of losing him.

   When my parents learned they had to move, with less than 24 hours notice, my Dad didn't take it too well. He watched as an army of friends and family worked to move everything they could, feeling helpless and full of anxiety. There was little we could do as we watched the panic attacks plague him. He wasn't even really settled at my sister's for 24 hours when his shortness of breath became bad enough to go to the ER the Friday of Memorial Day weekend. We all felt the stress really played a part in his condition deteriorating, as he'd not even been out of the hospital a month really. At first the VA said all he needed was platelets, so they gave him a transfusion, and said they were going to keep him overnight. Then they told him he'd probably be out by Tuesday.... On Wednesday and Thursday he already had scheduled follow up appointments, so they just kept him longer... he needed more blood anyway. They did another bone marrow biopsy. The news wasn't great. My father's cancer is worse again. His blasts are back to 25%.

   To make a long story short, his doctor made it clear that they were running out of treatment options at the VA Hospital. The VA tried to make arrangements to transfer my father to Moffitt Cancer Center in Tampa to see if they can use some other treatments to get his blasts back down to 5%. We received the news today that Moffitt accepted him as a patient and he will probably be transferred tomorrow. When Moffitt  accomplishes that, getting his blasts back down to 5%, then the VA will rush the Bone Marrow Transplant in Nashville. This is such a critical time for my Dad... this is life or death.  He is doing his part, cooperating with the doctors (anyone who knows him knows how hard that in itself is for him lol), staying in the hospital when he'd rather be home, agreeing to more chemotherapy when the last round nearly killed him with side effects, etc.....

   My point to this update is this, to know my Dad is to love him. He is always there with a helping hand, or a good word of advice. He is always there to make us laugh and encourage us, but now he needs us to be there for him. He needs our prayers now more than ever. Please add him to your daily prayer list, your church prayer list, and if you have friends and family that believe in the power of prayer, spread the word. I would like my dad to be flooded with LOVE & PRAYER... If you feel like contacting him, please send him a message of encouragement.. whether it be by phone, text, email, or Facebook, I am sure he would love to hear from everyone. We would definitely appreciate the prayers... My Dad is a fighter, he won't give up, and with the Lord's help, he will beat this.

Family update

I've been really bad about keeping up with this blog... that's okay though, because it's mostly for myself and family anyways... but now that it's summer and I am down to only two classes this semester, I figured I'd take the time for an update... a lot of stuff has been going on with us. First, we are still in the process of moving. Not a big move, as it's only a couple blocks away from where we were, but the house is much nicer, and I honestly think the other house may have been causing Kaitlyn some of her troubles... hopefully we'll see an improvement now that we're out of it. The kids and Steve and me absolutely love this place we've moved to, and it seems that Zilla does as well. We are still moving some stuff over, but we're getting there :)

Kaitlyn and Josh are getting really excited about summer break... they have finals this week, and Wednesday is their LAST day of school!!! They are really excited about spending a couple weeks with their Aunt Steph soon...

Josh is now half way done with high school! Or he will be after Wednesday. I can't believe how fast time flies sometimes. He is growing up so fast. He is a very mature kid, and I am so proud of him. He really is a great kid, he is never getting into the trouble a lot of kids in high school do, and this year he got his 2nd varsity letter for weight lifting! He's got me a little worried though, because he recently informed me he wants to play football for his school next year... I am all for the sports and extra curricular activities, but I don't want to see him get hurt. He is a strong kid though, so I'll try not to worry so much and let him have fun :)

Kaitlyn is hoping she can avoid going back in the hospital, because it would fall at the same time Stephanie is coming up to get them, but she is also tired of feeling sick and tired, and ready to do what she has to in order to feel better. She has been having a lot of trouble with shortness of breath and pain in her chest/lungs lately. She is also complaining of the "bubble" in her lungs again. Sometimes it doesn't last long, other times it lasts for hours. She was diagnosed with pneumonia a couple weeks ago, and before that her PFT's had dropped and her pulmonlogist had put her on oral antibiotics, but apparently they aren't doing the trick, because when she followed up her PFT's were the same (still down) and they ordered a different (third) kind of oral antibiotics and inhaled antibiotics (TOBI) as well. If this doesn't work, she will be going back into the hospital for at least another two weeks :(

Gabby is doing well, she is getting so big so fast! She is getting better about going to daycare, but because she is constantly getting sick there, she doesn't get to go all that often. That will change if I get into the nursing program though, so we are hoping her immune system catches up soon and starts fighting these things off. We are working on potty training, but it's touch and go, as sometimes she wants to and sometimes she'd rather go hide lol. It is hard for me to believe she will already be 2 years old in just a couple months. She's getting really talkative, and has added a lot of words to her vocabulary. I guess it helps that she is such a mimic :)

Steve is working hard as usual. He is usually working six days a week, but his company is about to put him through captain school, which will take about 2 months, but is 7 days a week. That means we won't be seeing very much of him in the next couple months, but he can be officially referred to as Captain Steve from here on out lol. He's very excited about getting his captain's license, but worried that his ADD will make it harder for him to study. I have faith in him though, he'll do great :)

I am still plugging away at school. I recently filled out an application for the nursing program down in Fort Myers at Edison State. I really wanted to do the program here in Punta Gorda as it is closer to home, but they only start their program once a year, and I missed the cut off which means I would have to wait another year. If I don't get in this semester, that is what I will do, but if I do get in it will save me a year, so the travel is worth it. Especially since my girl Alley and I will be car pooling. She is a great friend, on the same career path as me, and we study well together. Hopefully we both get in this semester, because we make a great team. It will be a little difficult with Kaitlyn's health issues, but I really feel that I need to do this not just for a career and better future for our family, but so I can take better care of Kaitlyn as well.

We'll that's it... all caught up, except for maybe Zilla... she is doing great too... she loves the new house, and the new yard. She especially loves chasing all the birds that frequent our back yard looking for a meal :)