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 :)