Tooth Fairy already???

Okay so here is a quick update about Gabby. I guess I will start with how it happened... yesterday we were at Joann Fabrics and Kaitlyn was carrying Gabby. Gabby wanted down, so Kate put her down and told her to "go get Mommy". Gabby started running toward me, and to be honest she wasn't that far away to begin with, only a couple feet, but she tripped and fell, and of course smashed her mouth on a shopping cart that someone had left in the middle of the isle. Her teeth must have hit the bar on the bottom of the cart, because the blood was instant and copious. She bled all over the both of us, as I ran up to the front of the store to ask for a bathroom. The store manager tried to calm me telling me that mouth wounds bleed a lot and it was probably just a split lip, but I could see her top teeth were not where they used to be, and so after we took her to the bathroom and rinsed her mouth a little I could see the extent of the damage, I immediately took her to the E.R. Luckily for us she didn't need stitches, but she had moved and loosened her top teeth, and they told us to see the dentist first thing this morning. She also ended up with 2 fat lips because she busted them both up pretty bad.

So this morning I took her to the dentist here in Port Charlotte. They were very good and took her back relatively quickly. The dentist told me that the E.R. doc probably shouldn't have ever touched her teeth (he had wiggled them to see if they were in danger of falling out), but that she couldn't do anything, and that she had to refer Gabby to a pediatric dental specialist and that she really needed to be seen ASAP as in today.... so after giving me like 10 different dentists to call, we lucked out and managed to get in with the 2nd one we called... also the 2nd closest, only about an hour and a half away in Naples. She also warned me that Gabby may possibly lose her teeth still, because even if they did move them, they could still die and need to be pulled... what she didn't tell me is that was just one of the possibilities... there are several.

The dentist she saw was very nice... but what they did to her was anything but. Once they took us back, they made me hold her down on my lap while they forced her to hold the x-ray screens in her mouth... not easy or pleasant, but totally 100% necessary. Then the dentist came in and said that it didn't look like she had damaged the permanent teeth, but there was still a chance and we won't know for sure until they come in around age 5 or 6. Then she told me she would like to try and save the teeth, but that she had to reposition them or move them back to their original location. She then told me they would NOT be putting her to sleep or giving her anything other than  Novocaine because she is under 2 years old. NOT COOL. They put her in a "papoose" which is really just a nice name for a straight jacket/backboard combo used on little kids and babies.... Gabby was NOT happy... then they shot her gums up with Novocaine and pried her mouth open with some kind of guard that kept it open. They then pulled her teeth back into place by hand.... downright traumatizing... for both of us... Gabby was screaming and crying, and I was in tears... Kaitlyn was trying to look out the window while covering her ears.... traumatizing for all of us I guess.  Long story short... it didn't take that long to accomplish, but it felt like FOREVER watching her suffer.

The dentist told me a few things can happen... in a month we will know if the teeth are "firmed up" meaning they are no longer loose... but it is possible that may not happen. IF they are still loose when we go back in a month they will most likely pull them. Also, if she bangs them at all in the next month they are most likely going to fall out, since moving them back made them looser still then they were already. It is possible that they will "firm up" but the nerves may still die... then they said they will TRY to save them with 2 baby root canals... again with nothing more than Novocaine because she is under 2.... NOT COOL... it means another go round in the baby straight jacket that she absolutely hates.... if the root canals don't work, she could still have to have her teeth pulled. The last and final possibility is that the teeth will firm up and the nerves will be fine, and she will get to keep her teeth with no root canals needed... obviously this is what we are hoping and praying for, because I am emotionally worn out watching her suffer in pain through this ordeal. I am really hoping we can keep the "tooth fairy" at bay for just a few more years :) Either way, Gabby is still smiling

Thanks for praying for Gabby, we appreciate it. <3 to all - Kelly

Christmas Break

I know I have been horrible about updates, but in my defense life is busy busy busy.... The kids are now also on Christmas break, and the 7 day countdown to Christmas has officially begun. I am taking a few minutes to give an update on the kiddos :)

Josh: what can I say... my boy is not really such a kiddo anymore... he is growing up so fast... he is getting so tall, and mature, I am so proud of my boy. He recently told Steve and I he thinks he'd like to be a doctor. I don't know if this is what he will end up pursuing or not, but I am so glad to finally here him making plans for his future education. Maybe it is because as much as Steve and I have always stressed the importance of continuing their education with college, he now sees us practicing what we preach, as he sees me going back to school myself. Whatever the cause, I am also overjoyed that he is setting his sights high and pushing himself. He is working on bringing up his grades, but he is still a kid, and having fun with his BMX and playing X-Box as well. I enjoy watching him having fun, and we even had a day where he was home recently with just myself and Gabby and we just hung out together and he tried to explain the X Box stuff to me.... as much as I really don't get into that kind of thing, I really enjoyed the time with just me and my boy, not to mention watching him and Gabby together just warms my heart :)

Kaitlyn: There is always so much to say when it comes to Kate... she is working on getting better with her medicines... I am trying so hard not to nag nag nag, but I see it as my job to do so until she gets her treatments done. I know it is partly because she is a preteen, and partly because she can remember well her life without treatments, but she really fights me on some of her medicines and treatments. She is really good about doing her breathing treatments for the most part, but I have to remind her to take her vitamins and antacids, and no matter how many time I tell her to take her miralax, she fights and fights and just won't drink it unless she is backed up and doing a clean out. It got to the point where finally when discussing it with her pulmonlogist at CF clinic last Wednesday, he actually contacted her GI doc and requested a different medication.... she started that yesterday, and thankfully it is something that can be taken in a medicine cup instead of drinking 8 oz of the stuff. Hopefully she'll be better with this medicine. As for her lung issues... she was having difficulty lately, getting tired out quickly, as well as once again complaining of the stabbing pain and "bubble" in her chest... only this time it was under her rib not near her heart. Because of this as well as being a little backed up due to not taking her miralax, they have asked us to bring her back up this week to do a chest x-ray. Hopefully that will go well. Her PFT's make me a little nervous each time we go up there... it seems like every time we go they drop a percent. That may not sound like much, but when you are going every month or so and it continues to drop, the percents add up.... this time was no exception she dropped from 80-81% last time to 79% this time. I know that I should be happy she still has relatively good PFT's, but when I consider that after she was diagnosed and was treated for the first time in the hospital, her PFT's were 104% at the first check up post hospital stay and then hovered in the 90's for a long time after... to me that is a significant drop for a year. As a matter of fact, I asked her pulmonologist if they were going to continue to decline so steadily and he said they shouldn't, but so  far they are. They didn't seem as concerned, but they did culture her again to see if the pseudomonas had returned, and we should get those results sometime next week... if it has returned, they want to start her on yet another new medicine called cayston, to see if she does better with that then the Tobi or the Colistin. They also ordered her a new nebulizer, as they agreed with me that hers is not working properly, and this is the second time in only a little over a year that we've had to replace this one, so they are not going to order with Allmed again, this time we are going through the CF Pharmacy, so she is getting a better model nebulizer as well. We are all hoping this helps with her breathing treatments, as part of the difficulty of getting her to do them without argument is the time they take, and they are only taking so long right now because the nebulizer isn't working right. I am planning on calling the CF Pharmacy tomorrow to see when they are sending that out, hopefully she will have it by Christmas. Speaking of Christmas, Kaitlyn is so excited... but she too is growing up fast... she decided this year she is a little big for pics with Santa, so pics with Santa were of Gabby alone. I guess you can't stop them from growing up, no matter how much you may want to slow it down. This is also the first year we have had trouble with Kaitlyn and her grades... she fell a little behind this semester, but she worked hard to catch up, and we are hoping she gets honor roll when her grades from finals are in.

Gabriella: What can I say about my little handful? She is getting big fast too... She is growing fiercely independent... she throws a fit when you try to feed her, she wants to do it all herself. She still doesn't talk much other than the baby babble, but she is getting good with names... she says Mom (or Mama or Mommy) as well as Dad (or Dada or Daddy), she says "Bub" which is what she calls Josh short for "Bubby" which is the nickname we used for brother... she also tries so hard to say "Sissy", but it comes out sounding more like "Titty". She can say "Nana" and "Pop" but she is still working on "Auntie". She is also saying "Love You" and "bye" but only sometimes. Gabby is our little mimic, she copies a lot of what she hears... for instance one day when talking to the kids I jokingly said "Duh" and she repeated that until we were all laughing and in tears. She still doesn't say food words like milk or juice or eat, but I am hoping that will happen soon... right now she just does the milk sign... which is really "give me" in her mind, and she kinda whines at you with it lol. She definitely gets her point across though when she wants something. She has been doing better with her belly troubles, but I am pretty sure she is still battling the C-Diff infection. We still don't know how she got it in the first place as she had never been on antibiotics before, but I am convinced she picked it up at daycare since that is where it all seemed to start. Her GI ordered another test to see if she still has C Diff (or has it again), but Kaitlyn put the paper in her room and it disappeared. I asked the nurses to fax me a copy, but they didn't so i have to make that call again tomorrow as well. All in all Gabby s doing great, and we are all excited for Christmas with her this year as she's a little bigger and hopefully will enjoy it more. One thing for sure, she really didn't like Santa this year... Kaitlyn never went through that, but Gabby made it crystal clear, she is not a fan of the big scary man in the red suit.

That is about it for the kiddo update... Steve and I are doing okay too... he is working hard leading up to his vacation, which officially starts on Christmas Eve... granted it's a staycation, but it's the first time ever he's taken more than a few days off at a time, so we are looking forward to ALL being home on "vacation" at the same time. We are all looking forward to a lot of family time :)

Also last but certainly not least... my Mom and Dad.... if you are reading this, please take a minute to say a prayer for both of them. This last hospital stay was pretty rough on both of them. My Dad's anxiety was up, and of course he lashed out at the doctors and my Mom... it isn't easy to watch your loved one suffer, but it's even harder when they get so upset and take it out on you. It's also very hard to here him say that he doesn't think he's going to make it and that this is really killing him (he meant literally not figuratively). The doctors had to adjust some of my Dad's meds and he is doing better, but they are possibly headed into a four month long stay (for the bone marrow transplant) which will be infinitely harder on them both as it will be much farther away (as in Tennessee) and we won't be able to just drive up and visit so easily. They found 5 possible matches for the transplant, but they are doing further testing, and we are hoping if one of them is determined to be a match he will be heading for the transplant shortly after the new year. We are feeling so blessed especially to have 5 possible matches, it can't be anything other than God's hand at work!

Thanks for keeping up with the kiddos, and thank you even more for the prayers... Love to all - Kelly

Kaitlyn hospital update

So last week on Friday Kaitlyn had a sick visit at the pulmonolgist, where they decided to go ahead and admit her due to decreased PFT's and some obvious sinus issues. We worked it out where we went up the next morning so we had some time to pack up the car and get ready, so she was admitted on Saturday for what was supposed to be a two week stay. After a few days they rechecked her PFT's and they actually went down a percent, instead of up like they hoped. Also, this past Saturday (which marked one week in the hospital) they got the culture results back which showed she was resistant to the IV meds they had been treating her with for the whole week. So Saturday they switched her meds. Unfortunately Kaitlyn didn't tolerate the new medicine too well... She spent the next couple days in bed with no appetite and really bad nausea. The zofran they gave her didn't seem to make much impact, so yesterday the doctor switched her meds again, and this morning she finally started feeling better... just in time too, because she had 3 visitors today and she had the energy to enjoy their company! (Good timing for Dad, Nana, and Great-Grandma! Yay)

So anyway, we talked to the doctor today, and Kaitlyn probably won't be going home Saturday after all... he said it depends on her PFT's which they are repeating again this Friday, but he is looking more towards the middle of the week. I am hoping before Wednesday, since that is when I start school, and Kaitlyn will have already missed two + weeks, but she is my first priority, so she stays as long as necessary... we did have some good news though... although they said her sinuses don't look great (I guess in CF patients they really never do,) she doesn't need surgery! so Yay for that.... she does however have to start doing sinus rinses 3 times daily and they are putting her on a nasal steroid for God only knows how long... all they could tell me is the rinses are for the rest of her life, the steroids are "long term". So far she is not so big on the rinses at all, but she says the steroid spray is easier.

All in all she has been doing about the same... a little better as far as energy and appetite, which is great. She was steadily gaining weight until the switch in meds, and now that she is feeling better hopefully that will pick back up. Her PFT's haven't budged yet, but I am hopeful they will also be better by Friday. I really hope so, because the other possibility, that this is her new baseline scares me as that would mean about a 20% drop in lung function in only 11 months... we are praying they will be better and if not, we will still be thankful because we know it could always be worse. Kaitlyn is doing her medicines and treatments the way she is supposed to and that is the best she can do.... everything else is in God's hands.

Thanks for all the prayers, if you want to send Kaitlyn a message, she is on facebook... she loves getting the notes and comments from everyone... the visits too, but it is a long way to drive :)

And although Gabby is enjoying being her with her Sissy, the hospital has not been as good to her.... not the hospitals fault, she is accident prone and way to adventurous for her own good... she has fallen countless times, gotten bumps, bruises, scrapes, etc... she looks a little worse for wear then when we got here, but she is all to happy to get all the toys both the hospital and the Ronald McDonald house keep showering her with...  between hers and Kaitlyn's I may just have to rent a U-Haul to get all this stuff back home...

Kiddo UPDATE 7/19/11

Josh: so, Josh just took his tests today and got his driving permit.... I believe I may have received my first official grey hair over the realization that my son can now drive.... or maybe it was the thought that he may be driving me (somewhere other than crazy that is). He is very excited and can't wait to get some practice in with his dad (not sure I'm ready for that just yet lol) He's doing pretty well all in all, still looking for his first official job now that he's back home from his vacation, but unfortunately, that is not an easy thing to obtain in our current economy. I am not to worried about it though, because they start back to school in only 3 short weeks. So he won't have as much free time soon anyways. He still wants to work, and I feel for him, I remember my first taste of Independence at his age when I got my first job and could buy my own clothes etc. I just can't believe he's there already... time sure flies....

Gabby: well, Gabby just had her 1st Birthday on Saturday... I can't believe she is 1 already, but the calendar says it's so, so who am I to argue... She took her first official steps a week to the day before her birthday at our friends (Ryan and Rachel's) house. It was a glimmer of joy in an otherwise impossibly hard time, as we were there to say our final goodbyes to Ryan before he passed after a horrible accident. Now she is unstoppable as she toddles all over the place. Steve has put up gates to contain her to the living room, because otherwise it would be impossible to keep up with her. With all that was going on, we were unable to do the traditional big 1st Birthday party, but we had a small family gathering on Sunday, and she had a blast. She had her first taste of cake too, a cupcake on her birthday 7/16 which she demolished in record time, and a smash cake at her party on 7/17 which she also had a lot of fun with. It was so cute to see how much she enjoyed it, and kinda humorous to watch as her Great-Grandma (my Grandma) looked on cringing at the mess..... all in all she had a great birthday, and as I look back over the last year although it has been somewhat more stressful than most with Kaitlyn and my Dad's diagnoses, it has also been extremely blessed now that Gabriella has completed our family :)

Kaitlyn: as for Kaitlyn, she got to see her new pulmonologist last week. Unfortunately she is still fighting the pseudomonas and it is resistant to the Tobi. He put her on a new medicine called Calistin or something like that, but he said if that doesn't do it he will be admitting her for another clean out or "tune up" after her next visit. Her PFT's were in the 40's at diagnosis last year, but in the 90's after she was discharged, and they have continued to steadily and slowly drop since then. They were at about 83 at her visit with the new Dr. and he says he thinks they can go back up with another clean out. Kaitlyn absolutely hates the calistin, she says it's even worse than the Tobi, but thankfully she is not fighting it and is doing it without arguments because she is beginning to understand the seriousness of all this. Also, since she has cultured positive for pseudomonas since February of this year if this calistin doesn't work it probably will be colonized by the next culture... we are still trying to avoid that, but I am getting nervous. It does appear that another hospitalization is imminent, and we've come to terms with the fact that the hospitalizations will be necessary, but it couldn't come at a worse time... the kids start school August 8th or 9th, and her follow up actually falls on my first day back to school August 24th, so it looks like if it comes down to it, both Kaitlyn and I will be missing some school right as school starts. On the plus side, we talked about home IV's and the new Dr. said he'd consider it after the first week.... so hopefully that will be an option as the hospital is 1.5 -2 hours away from where we live. She is still tired a lot, but there are good times where she seems to have more energy too... She is still a bright, bubbly, and happy girl. She absolutely adores her little sister, and spends a lot of time playing with Gabby. I think they are pretty good for each other, as they keep each other busy a lot of the time.

Also, if you are reading this, please add my Dad to your prayer list. He has been fighting leukemia for a year now, and has recently been told that it is now acute leukemia. They say they are running out of treatment options that aren't dangerous to him. He needs prayers for healing and for guidence as we figure out what the best thing for him is. He is the strongest man I know, and he is still fighting and in good spirits, but he still needs prayers Thank you <3

Kiddo Update 7/3/11

I know it's been awhile, so I am gonna do a little update of the kids...


Joshua just had a birthday on June 14th. He turned 16!!! He is currently on vacation up in New Jersey and loving it! He is working with his great Uncle, and loving having his first official job. He is already telling me that he will save enough money so that when he comes back he can get his permit... being that he is coming back next week, I am not sure I am ready for the whole driving thing, but ready or not... he is that age. Also, Josh has a new girlfriend, Ashley, (who he started dating up there and apparently was "in love" with in under a week lol). He's always been a hit with the girls, but he is telling me he LOVES this girl, and how he will be so HEART BROKEN when he has to come home because he doesn't want to leave Ashley in New Jersey... it's cute and all, but I am so not ready for my son to tell me he's in love at 16. It wasn't so long ago that I was a teen, so I remember how dramatic they can be, but still... lol.... On the plus side, they have decided that they will not "date other people" this year and will instead focus on school etc, so YAY for that idea because I can totally support the whole focusing on school thing... even if I don't think that agreement will last very long. We'll see I guess. I have been having some long text conversations with him, and he really cracks me up with some of the things he says... a lot of it I can remember saying something similar to my own parents... he actually told me that this was a NEW ERA and A LOT has changed since I was his age.... yeah because it was soooo long ago.... right? The nerve of these kids lol. Anyway, he wasn't to happy when I told him despite what he and his peers think they are NOT blazing a brand new trail, but just rediscovering a path our generation (and the generation before us for that matter) had created. He also pulled the old "I am more mature and responsible than most kids my age" thing with both me and his father... Both of us laughed, and I think I was closed to tears, because I can vividly remember telling my parents the same thing about myself. Raising teens is fun huh? I am convinced, this is our own parents revenge. lol....Still, I can't wait for my boy to come home... three weeks without him is a long time, precocious or not :)

Josh and his new girlfriend Ashley

Kaitlyn is still fighting pseudomonas, and not yet back to her best. She does have some days that are better than others, but she seems to pay for it later. I don't know if it's just the pseudomonas or what, but she is tired a lot. I really don't get how her pft's are so "high" and yet she has NO energy. At her last appointment {(6/8/11) which was truly her LAST appointment with DR. F as he moved his practice to Orlando,} she had dropped weight again, so they added a nutritional supplement to her diet. I had asked what percentile she was in as we have been struggling to get to that ever elusive 50%, but she had dropped back down to the 10% range... she is closer to the 50% for height, but they want her at 50% for both.  Hopefully the supplements will help, because I really am tired of seeing her so tired and not feeling well... Last week on one particular day I picked her up after I got out of school and all of a sudden she started not feeling well... she went straight to sleep on the couch as soon as we got home not even taking the time to kick off her shoes. Just a couple hours later she woke up and without warning threw up all over the living room floor. Poor kid didn't even have time to get to a trash can let alone the bathroom. Afterwards, her stomach felt better but she had a migraine that lasted her until the next day, no medicine would help. I thought it could be the anti-acid meds but not sure... thankfully she sees the NEW pulmonologist this week on July 6th, then the NEW neurologist on the 14th... and Both Kaitlyn and Gabby see the gastroenterologist on July 12th, so it'll be a busy couple of weeks for us.  Kaitlyn did get to have a sleepover last week, with her friend Seonaide, but was so exhausted when she left that she crashed for a six hour nap afterwards. She is supposed to go on a sleepover today, which will be her first in months, but i am affraid she will overdo it and be exhausted again. This is also the first sleepover she is going on where her friends mom isn't a nurse, which makes it harder for me to let her go, because I feel that sending her on a sleepover is kind of tough with all the breathing treatments etc. I just feel bad putting that responsibility on anyone else. I know Kaitlyn knows what she is supposed to do and how to do it, but we learned the hard way that she still needs to be supervised or she will sometimes rush through it or not do it at all. Either way, she is a kid, and it is summer, and she has a rough enough time without denying her some of the simple joys of being a kid, such as a sleepover with her best friend, so every now and then we gotta let go.... on a more cheerful note, Kaitlyn will be starting middle school when summer ends!!! She is really excited, and I am even more excited for, as she should be in the advanced program that they have. The program starts in middle school, and basically those in it graduate high school with a diploma AND an Associates Degree!!!!! Hopefully she doesn't miss as much school this year, last year she missed something like 30 full and 15 half days due to her health issues and doctors appointments. If she does miss school I hope she can keep up with the accelerated program. She managed to keep mostly A's and B's last year despite all her missed school, so thankfully she is a smart kid and her illness didn't hold her back in school. We did put her on intermittent homebound later in the year, and that helped, so we will be doing it right away this year. :)

Kate and Gabby cuddling to sleep

Gabriella is getting big fast! Although she is still skinny and tiny that way (at 11 months she was only 17 lbs) she is sooooo tall/long! She is going to turn 1 on July 16th, and the year has just flown by so fast!!! I can hardly believe it! She is still trying to walk, but not quite there yet... she is VERY independent and likes to do things herself instead of having us do them for her... she will actually try to slap our hands away to do it herself, its very cute... She is also a very skilled mimic lol. She hears someone say something and even if she can't say it she gets the sound so you know she's repeating you. Her doctor says she is advanced, and at the least I can say she is too smart for her own good, she is very headstrong and unfortunately got her Mommy's temper lol. She also apparently got my fear of bugs, as the other night when she saw a moth Steve was trying to get in our room she freaked out... it was too funny. She is very healthy, the only on-going issue she has is lactose intolerance, so that's a blessing. She's also turned nursing into an extreme sport as she tries to stand while she nurses... its pretty funny to see as she just ends up bent over waving her butt around lol. We are just happy we've made it this long...She is getting really sick and tired of the baby foods, and pretty much spits them out after just a couple bites, so we are moving on to toddler foods and letting her have small portions of what the rest of us eat at dinner if possible... she has always been very picky, she NEVER took to eating the baby food meats, and thankfully we had someone we could give them to, or a lot would have gone to waste... she does however love actual meat, well at least chicken... I still feel a little hesitant giving her red meats yet...We did finally give in and let her try peanut butter, thankfully no allergy issues, and she LOVED it! We also let her try eggs, and again no issues and she enjoyed it... until she got a bite with ketchup on it and then not so much lol.We can't believe that almost a year has passed already. We are looking forward to her 1st birthday in just a couple weeks, but I think we are going to keep it to a small family celebration. I'd like to have a party for her, but with Steve being the only one working, it's not really feasible, and Steve has to be in a wedding on her birthday, so it is what it is... we're going to have a small family party for her on Sunday and let her have her smash cake and stuff... we'll post pics :)

Port Charlotte Great Strides walk 5/21/11

So we did the Port Charlotte Great Strides walk today!!! It was a short walk route, so we walked it twice :)

Along the way we met a nice comedic lady dressed as a crayon.... Steve told her he loved her "red" outfit... a little joke aimed at the whole red/green color blind thing.... she got a kick out of this, and entertained us with some on the spot poetry...

After the walk the kids had some fun in the bounce house... it was Gabby's first time in a bounce house and at first she wasn't all that sure about it... but she warmed up to it eventually

then the girls decided to have their faces painted.....

It was a much smaller event than Fort Myers, so we were only there a couple of hours, but it tuckered Kaitlyn out enough she slept for five hours once we got home.... she'd probably have slept longer, but I had to wake her for more breathing treatments. I am hoping once she kicks this pseudomonas she'll have some more energy, she's been feeling pretty crappy lately, and I would love for her to be able to have some fun without paying for it the rest of the day. It was a nice walk though, and a great cause, hopefully soon there will be a cure!!! All in all it was a great way to spend our Saturday :)

I kinda had a feeling, but I still wanna cry

So I just got off the phone with Kaitlyn's pulmonologist's office.... Kaitlyn has been really coughing a lot, and not able to clear her airways. She's been having really severe sore throat repeatedly on and off on and off.... I had a feeling that her culture was going to come back with something, but I was really hoping it wouldn't be pseudomonas again... no such luck. This is the second positive culture for pseudomonas, and she has to do cipro and tobi again.... this time I will have her do them in front of me, since she pulled one over on us last time... I can't take any chances. It scares me, because this can become mucoid in about 6 months, and this is the 2nd positive culture in the last 3 months, so I want it out of her now....  I am sick of seeing Kaitlyn feeling so crappy... anyone who knows her knows she is usually a bouncing off the walls bubbly kinda girl....but lately she has been getting so tired so quick, she doesn't even have the energy to keep on doing karate, and she absolutely loves karate.... It's so hard to reconcile the fact that she is sick, because to look at her you wouldn't know... and for her reality has finally set in... it breaks my heart to hear her say, "Mom, I just don't want to have to do all this anymore".... I know a lot of kids with CF grow up doing this from a much earlier age, but I wonder if that would have been easier, if she didn't know any other way.... to have this all thrown at you all of a sudden, it seems like her world (and ours) was just flipped upside down..... so now she is going to have to do another 28 days of tobi and she absolutely hates it because it makes her nauseous and she has to do it twice a day.... hopefully this will be the last round for awhile, I hate watching her suffer and just wish I could take it all away for her....

Our 1st Great Strides: Fort Myers 2011

Today was our first ever Great Strides Walk!!! We set a goal of $1500.00 and by the time we walked this morning we were only $150.00 shy of meeting that goal. I have no doubt we will actually meet that goal before our next walk(s) that we are doing on May 21st!!!!! Especially since we still have people who have pledged donations, but haven't been able to do them just yet.... that being said, I am so thankful for everyone who helped us make that goal possible, not just the generous donations that many made, but also for our team Kaitlyn's Crusaders!!!!! We are so blessed to have people who care enough to not only donate, but also help get out there with us and spread awareness and help raise funds for a cure!

We had such a great time at the walk, everything ran smoothly and we started the walk right at 9a.m. I don't know the exact number, but the Fort Myers Walk raised over $15,000.00 between all the teams!!!! Mary Calvert from the CFF in Tampa started off our walk with an inspiring talk about some new drug developments for CF. The main one being VX-770. Right now VX-770 will help about 5-20% of the CF population, but we were told that this is a starting block for the development of similar treatments that will help many more. This drug is the closest yet to a cure (for those with a specific gene mutation), so they are looking forward to the next decade of development and we are hoping they are right and maybe a cure will be found in that time. The research for these treatments are primarily funded by the CFF and that is what the GREAT STRIDES walk is all about!!! 

We are so glad the walk went so well, and Lakes Regional Park was such a beautiful and fun place to have it!!! We had been to the park once before when Kaitlyn was hospitalized right after her CF diagnosis, but we had only seen a very tiny part of it where they have an old train and a huge playground. Where our walk started there was another playground, and we spent some time after we signed in to let the kids play a bit before the walk.

Gabby of course loved the swings, and Kaitlyn and Josh loved the rock climbing wall and some of the other things as well. At 9 a.m. we walked, we kind of lagged behind taking a couple pics along the way...

Mary had said in the beginning if we were feeling "ambitious" we could walk the trail twice.... so we started to.... but about half way through we heard them making announcements and headed back....

And it was a beautiful park, and we really enjoyed the walk.... After the walk was done we had pizza and water donated from GREAT STRIDES sponsors Dominoes and B103.9, then we headed over to the wet playgrounds where Kaitlyn had a lot of fun. At first Gabby didn't want much to do with it though...

After she had her fun in the water, she got changed and headed out on another walk with her dad and brother. I tried taking Gabby back in the wet park so she could play with the water a little, and she was much more receptive... unfortunately the battery on my camera died, so no pics of her kicking and grabbing the water, but she had fun getting just a little wet.... Anyways, while Kaitlyn, Josh and Steve went on their longest walk yet,  the rest of us girls stayed behind and let Gabby take a much needed nap. We headed home exhausted (especially Kaitlyn), but thrilled that the walk was so successful and fun!!!

We had a really small team as this was our first walk, but our small team made a big difference! Over $1300.00 raised with more to come!!! Thank you Mandy, Mom, and Katie for joining Josh, Steve, Gabby, Kaitlyn and me at our first ever Great Strides walk! Also a big Thank you to Stephanie who wanted to be there, but even though she couldn't be made a huge impact on our fundraising efforts! Also a big Thank you to everyone who donated and who are still donating to such a great cause! Next year we hope to add walkers to our team, and raise our goals even higher!!! THANK YOU, THANK YOU, THANK YOU to ALL of Kaitlyn's Crusaders!!!!!

WE THANK YOU ALL FROM THE BOTTOM OF OUR HEARTS - THE STRANSKY FAMILY

Strawberry Festival 2011!

We had a girls day out this last Saturday. My mom, sister and I took Kaitlyn and Gabby to the Strawberry Festival in Plant City! It was Gabby's first time, Kaitlyn's second. They both had a blast! We went later than we did a couple years ago, and therefore avoided most of the traffic, but the festival itself was still packed. It was definitely a huge differnce for Kaitlyn as the last time she was there was before her diagnosis and she ended the festival in so much pain she had to be carried to the car by a friends brother who was with us. This year she left on her own to feet with a smile from ear to ear!!!  Next year we are planning to go again, but this time we will get an all day pass for the rides....

Kaitlyn about to go on her favorite ride the Ring of Fire

Kaitlyn with her new friend also named Kaitlyn

So excited after winning her "moo-moo"

Kaitlyn won Gabby a ducky, and the lady gave Kate the bat for being such a good big sister!!!







Life's like a jump rope

C....F.... who would think those two little letters would have such a huge impact on our lives. Not me... I can not get over how fast our lives can do a "180". Those two little letters have totally rocked my world. Life has changed so much from them. I can not stop researching. I can't stop worrying, and I really really can't stop THINKING. It's all consuming... I wake up and I am worrying about breathing treatments getting finished on time, I worry if Kaitlyn is going to feel any worse or I am praying that she is feeling even a little bit better.I am thinking of ways to improve our fundraising, or planning on what to do next.... I know that we are still lucky. I see posts on facebook or in others blogs about loved ones passing on or they are just sliding down that slippery slope of poor health. I know that it could be worse, and I worry that it will be.... When I go to bed at night, I am worrying about Kaitlyn staying up so late to finish breathing treatments, or if she's gotten enough sleep because she has to get up in a few hours and do it all again. I worry about whether I really should pull her out of the public school system against her wishes,and despite the doctor saying its not necessary. I worry that maybe because I haven't yet, it's my fault she's now cultured positive for pseudomonas. As if the guilt for passing on the gene causing the CF wasn't bad enough. I really worry that she has been fighting infection for almost 2 whole months, and that she wakes up every morning to tell me that her throat is still hurting or hurting again, or hurting worse... I panic every time I see the school's number show up on my phone that it's going to be another call telling me that Kaitlyn is having more coughing fits, or coughing up more/worse mucus, or that her throat is hurting so bad I need to bring her something, or worse, one I haven't gotten yet... and that unknown is probably the worst. I pray daily for my daughter's health to improve, I pray daily for researchers and scientists to find a cure. I pray daily that maybe this has all been a horrible nightmare and that maybe if I pinch myself hard enough I may just wake up. I pray for all those that I read and hear about who have lost loved ones to this horrible disease, every single one of them touch my heart. I pray for those who are in the last stages of their battle, as well as those just beginning it, or anywhere in between. For awhile when Kate was still being tested (she had a total of 3 sweat tests) I prayed that each one of the test results were mistakes... that the next one would be good news. Then after diagnosis I was so devastated I quit praying for a little while. I read something, just an excerpt from a book written by a person who has since passed from CF.... his sister asked him if he was mad at God for giving him CF, and he responded, "God didn't give me CF, two bad genes gave me CF, God gives me the strength to fight it". It helped me realize that God didn't do this to my daughter, and it's okay to lean on him. I am trying so hard to give my burdens to him.. why am I failing so miserably?  My 11 year old daughter is handling this so much better than me. She always has a smile on her face and a song on her lips. Well... almost always... lately mornings have been particularly rough on her, and she is going through phases of fatigue throughout the day, but she still usually smiles through it... It's funny, you can have good days where you are revved up and full of fight....  and you can have bad days where it all seems so overwhelming.... it's like one of my (and Kaitlyn's) favorite songs from Blue October called Jump Rope.

 "I want to tell you that everything will be okay
That everything will eventually turn itself to gold
So keep pushing through it all
Don't follow, lead the way
Don't lose yourself or your hope
Cause life's like a jump rope

Up down
Up down
Up down
Up down yeah
Remember life's like a jump rope...."

Well... except I want to hear (not just say) that everything is going to be okay... but it sure is up, down, up, down, up, down...... 

Dear Lord.... these burdens are too heavy... I give them to you Lord.... please carry them for me. Thank you Lord. And Lord, if you could, please let me know that it will all be okay. - Amen

Take it easy...

So Kaitlyn went to karate tonight... first time in about 2 weeks. The girl just doesn't know how to take it easy. She used her inhaler before like she's supposed to... but she had to use it again before karate was over. I asked if she was okay, and she said she was fine, but I really should have stopped her then. I told her to take it easy (again), and just watched her a little more closely. Not even a few minutes later she was asking to bow out and pretty much gasping for breath... Not that I haven't heard her gasp for air before with exercise, but not like that... she was wheezy. I should be used to such things with all the trouble I had with my own asthma over the years, but as scary as it is when you can't breathe, it is infinitely scarier when it's your child and you feel helpless. I expected the inhaler to act instantly, even though I should know better, and when it didn't I panicked and called the doctor on call. I told him I gave her an extra 2 puffs on the inhaler as we were at least 15-20 minutes from home, but I was racing there to get her on the nebulizer. The doctor pretty much agreed with my plans and told me to call him if the nebulizer treatments didn't help. Well, by the time we got home the inhaler had helped and she wasn't as wheezy, but still short of breath. I told her to relax and do the nebulizer, and after all her breathing treatments, they did their magic and no E.R. visit was necessary. Thank GOD!   I also told her that if she doesn't start taking it easy, she may not be able to keep doing karate... she then broke into tears and said she didn't want to HAVE to take it easy... what do you say to that? All I could say was I wish she didn't have to either, and I wish I could make it better, but that's in God's hands.

For the most part, she is usually a very upbeat kid, she's got a great attitude, and she handles all these new struggles with such amazing grace for an 11 year old kid... I can completely understand her getting upset when she can't do something she absolutely loves... it just breaks my heart too. I really hope that once she beats this latest bug that she has an easier time with karate. She just tries so hard to keep up. And on that note, Sensei Paul and Sensei Soo and all the other black belts they have help instruct (some of which are RNs, which is nice to know in case it was any worse) are so understanding and so supportive of her it is amazing! She truly loves karate so much, as long as it is okay with her doctors, we will be keeping her in it even after she leaves the boys and girls club at the end of the school year.

Well anyways, all that albuterol made Kate jittery and she couldn't sleep, so we stayed up and added pics to her facebook profile... we went through a bunch of old photos and videos, and were laughing so much it's a miracle we didn't wake the rest of the house. It made for some great mommy-daughter time though :)  But I was noticing that as I looked at the pictures how I seemed to think of them as before and after diagnosis... it was really something to just look at them and see how much she has grown in just a few short months.... I don't know if it's just the few inches in height, or the few added pounds, or the growing up too much too fast that comes with something like this (it's a lot of responsibility to keep track of medicines, etc), but she seems to have grown up so much. I guess we mothers like to keep them little and protected forever, it's just so hard to not be able to do either.

It really sucks to feel so helpless. I have all this energy to fight, but at the same time....feel like I've somehow failed to keep her safe. I guess the only thing I really can do is put that energy into our Great Strides walk, so I guess tomorrow I will put together another email... I already updated my homepage today.... and on that note, I guess it already is tomorrow seeing as it's almost 2am... guess I should get some sleep... unfortunately for me, Kaitlyn scared me so much the adrenaline is keeping me from sleeping too.... MOMMY-DAUGHTER TIME BROUGHT TO YOU TONIGHT BY... INSOMNIA.....

(pic of my Warrier Princess from an impromptu stop at Sarasota beach last month)

the Good, the Bad and the Ugly

I know everyone has been asking me how Kaitlyn's doing, and I am sorry I didn't update yesterday, but it was a long day. She had her colonoscopy and endoscopy yesterday at All Children's hospital. It was our first time there, and let me just say wow. The hospital is huge, the kids there seemed to be having fun with all the kid friendly entertainment (such as game systems like Wii and X-Box as well as several toys and games that are hanging on the walls). Kaitlyn was a little nervous, but she did excellent. They didn't even give her numbing cream for her IV (they used Freezy spray?) but even then she did great! (Here is a pic of her right after they put in her IV.)

She had an endoscopy in another hospital just 7 months ago, and we had a much longer wait and it wasn't as comfortable... @ All Children's things went very smoothly.

Anyway, after her procedures, the doctor came out to talk to me, and the good news is he told me they didn't find anything else (such as crohn's disease, etc) THANK GOD!!! He said where she is having the issues is where they would expect a person with CF to have issues and he wants to "be aggressive" about it and so the bad news is he has upped her Miralax to 3x/day. Hopefully that will take care of it... but Kaitlyn hates the miralax, so it's still kinda bumming her out. When she came out of recovery, she was pretty dizzy and groggy, but she was happy it was over and done so quickly. She couldn't even hold her head up she was so dizzy, so she had to take a nap to sleep off the anesthesia.

After her procedure we let her choose where she wanted to go for lunch, and as she had planned all along, we went to a Chinese buffet restaurant. Fortunately for her, there was a Chuck E Cheese next door and after lunch we took her over so she could play some games. She had a blast, and she was nice enough to even spend a few of her tokens taking Gabriella on a ride or two.

They both had a blast, Kaitlyn really wanted to take Gabby on this one, but I had to draw the line...

anyway, Kaitlyn had a lot of fun, it was her first trip to Chuck E Cheese (they don't have one close by here), but we've promised anytime she has to go up to the hospital we'll stop by and let her play awhile...

And I would really love to end it here, on a good note, but unfortunately I can't. I received a call today from Kaitlyn's pulmonologist. She still has a cough, and tonight was going to be her last dose of her antibiotic, but it seems even though I was sure she was getting better, that she will have to do another round with a stronger antibiotic. Her culture came back positive for pseudomonas. Not the news I wanted to hear... so tonight she will start on a different antibiotic orally, and they are working on getting her TOBI (inhaled antibiotic) approved and sent to her ASAP, so she will probably start that one on Friday. I know that pseudomonas is not a good thing, but as this is the first time we are dealing with this, I am still doing a lot of research. The nurse who called me said thankfully it is non-mucoid which she explained means it hasn't colonized yet.... so that is better than if it had. Hopefully this round of antibiotics will kill it and we won't have to do the TOBI again for a while....

What I would really like is to see Kaitlyn catch a break. Lately she has been tired a lot, coughing a lot, and just plain sick of not feeling well. She was really excited about going back to school, and hopefully doing karate this week. I have to go down to the pulmonologist's tomorrow to pick up more neb cups for her, so hopefully they will still let her do karate Friday. I want to make her happy, but I also don't want her to overdo it and make herself worse.

I appreciate all of you keeping Kaitlyn in prayer. I let her know every time someone tells me they are praying for her so she is aware and thankful too. Every prayer helps! She is very aware of how many of you love her and THANK YOU for taking the time to tell her and show her. For those of you who have already donated to her GREAT STRIDES team Kaitlyn's Crusaders, THANK YOU!!!! For those of you who haven't donated yet, there is still time, our walk is APRIL 2nd. Please donate anything you can, even $1.00 is a $1.00 more they didn't have before. Everyone of you who donates can honestly say you're part of finding a cure for CF! Kaitlyn is a huge part of this walk, she is very involved, so she knows everyone who donates is truly showing their LOVE and SUPPORT!!!!! So once again THANK YOU, THANK YOU, THANK YOU <3 <3 <3