Tuesday, December 31, 2013

Farewell 2013

I have to admit that I am a little excited to say goodbye to 2013. As far as my health, it has been one of the worst years of my life and for that I am thankful for 2013 to be on its way out. At the same time, the year was full of indescribable magic watching my baby turn into a free thinking, independent, often bossy toddler!

Whether 2013 was the best or the worst year (or somewhere in between) I hope that 2014 is significantly better for all my Cysters, Fibros and their families. I also hope for some new health benefiting drugs for all of us in 2014 since we all know we could use them!!

Have a safe and healthy(ish?) New Year!!

Monday, December 30, 2013

Winter Weight

Uhhh so somehow I managed to lose weight over this holiday season. Seriously? Who does that? After indulging in all the winter treats, holiday feasts, and fatty egg nog I somehow lost weight! Only a CFer could manage to lose weight when the rest of the country can no longer button their pants.

Sunday, December 29, 2013

Port Surgery Part 2

I have been dragging my feet with writing this post, but I really want to get it down on paper. After deciding on getting my port I read a lot of blogs about port surgery, but most of the bloggers were cancer patients and most of them were completely sedated for the surgery. My two biggest concerns were not answered: what was it like to have surgery while awake (but loopy) and what would airway clearance be like post surgery?

Part One can be found here.

I was wheeled into the operating room and the nurses were talking to me while they strapped me down to the table. They put something in my IV line to make me sleepy, but as the moments went by and I was still chatting away, one of the nurses looked at me and said, "That did absolutely nothing for you, did it?" Realizing I was not in the least bit sleepy they gave me a little (or a lot?) more. The nurse told me not to fight the sleepiness and the next thing I knew I was out. I remember being awake for parts, but I think I was going in and out of consciousness. At one point I remember the doctor saying she had created the pocket for the port. I also remember being shoved pretty forcefully back and forth. I am not exactly sure why (I don't think I want to know) and am not sure if these feelings were exaggerated by my loopiness. I told them at one point that it hurt a lot. I am not sure if they gave me more sedative, but I remember nothing after telling them of the pain. I will say despite being pushed around and in pain I was 100% content. Even though I felt pain it really didn't bother me and my telling them was more informative rather than out of concern. I am pretty sure they could have said, "Suck it up, wimp!" and I would have gladly said, "Okay." So all of my fears of being scared or worried while in surgery were wasted energy.

I woke up towards the end of surgery and remember being wheeled into recovery. I also remember them telling me my PICC was coming out and watching the nurse pull the line. After that I have no memory until I got home. I have no recollection of leaving the hospital or the drive home at all which still weirds me out.

Recovery was better and worse than I anticipated. I was in more pain than I expected. Laying on my side hurt and certain movements hurt. However, my airway clearance did not cause any pain at all (although I did avoid the Vest).

I have had the port for over a month now and it is actually a huge relief to have it put in. The process of getting a PICC placed with my scarred veins and all the complications that came along with the PICC should (hopefully) be a thing of the past and next time I want IVs one small prick should do the trick. I sure can't complain about that! Now the whole skin allergy aspect is a whole different story..

Thursday, December 12, 2013

18 Months

Dear KK,
You are one and a half today! I can't believe how much my life is continuously changing with you! My favorite part about this age is that a few days after turning 17 months you started saying, "I love you!" I never thought my heart could grow bigger for you, but it did!
You also potty trained a few days after turning 17 months as well, but I still don't know how to navigate out of the house adventure without diapers and you are not night time potty trained so you still get to wear diapers.

Things You Like: Oh, little one you love life so much, but more than anything you love your Papa and baby cousin who you call Roo. I think Sunday is your favorite day of the week because you get to see your two favorite people! You also love playing pretend, doing anything art related, and helping me bake.

Things You Dislike: You are able to talk a lot, but you also know words that we aren't sure of the meaning. You get really frustrated trying to tell me things that i can't understand. You will come up to me and say something like, "Mama, laloo." While I am racking my brain wondering what the heck that means you keep repeating it over and over, louder and louder. It can get frustrating for both of us!

What I Like About This Age: Our days are full of coversations. Yes, they are simple, but it is so fun to hear what is on your mind. Some of our conversations are as follows.

K: Mama, agua!
M: Yes, this is mama's aqua.
K: KK agua!
M: You're right that is Kaylee's aqua.

K: Dada lights on
M: Yes, dada put the Christmas lights up and turned them on.
K: Yesh, dada lights on!

K: (chanting) KK, baby Rooooo, KK, baby ROOO

New Words: I can't keep track anymore as you seriously must know 30 or more. 

Saturday, November 23, 2013

Hola, Hola, Hola

I plan on bringing you Part 2 of my port surgery, but I wanted to share the "joys" of chatterbox toddler.

In Spanish class Kay is learning this song that basically goes, "Hola, hola, hola, (insert animal name here). It is then followed by a little sentence about that animal. For example, the duck waggles his bottom. Anyway, I was walking Kaylee to the park in her stroller yesterday (so we could crunch leaves) and she started singing her song. I loved listening to her little voice singing out for the world to hear until I realized she completely changed the lyrics...

Hola, hola, hola, boob boobs
hola, hola, hola, boob boobs!

Yes, she sang hello to boob boobs for our entire walk to the park. They don't warn you about this stuff when they advocate breastfeeding!!

Thursday, November 21, 2013

Port Surgery Part 1

My port surgery was scheduled for Wednesday morning at 10:00. It was the only time they had available and although I was glad it was in the morning I was really nervous about fasting that long! As a cyster I am used to eating a big breakfast and knowing how slow hospital are I figured I would not be in surgery until lunch time which meant I would be desperately hungry!

Luckily, chasing a 16 month old kept me busy enough that I wasn't able to get too nervous about the upcoming procedure. Around 9:30 my mom showed up to watch Kaylee and my husband and I headed over to the hospital where my dad met us in the waiting room. Unfortunately (or fortunately??) I am very familiar with the waiting room since I get my PICCs in radiology so I have spent a little too much time in those worn out chairs. However, today was the first time that I walked into an empty waiting room! I thought that maybe, for once, things would move quickly and everyone would be on time. I should have known better, when has a hospital ever been on time?

I was brought into pre-op and quickly realized I have spent too much time in radiology because every single nurse already knew me, knew I had CF, and knew I was a hard PICC placement. And when the radiologist came out to talk to me about the procedure, she knew me as well! In fact, she placed my last PICC and even remembered our conversation during my PICC placement.

Soon after being brought back they were getting ready to hook up my IV. Since I already had a PICC they decided to use that instead of starting a new IV which oddly enough was such a huge relief. I don't mind needles, but if you don't have to be stabbed, why would you? It also made me feel, despite not actually using my PICC, the daily dressing changes, lack of showering, and the obscene amount of gauze wrapped around my arm for the last week was actually kinda worth it...or maybe not. They gave me a dose of antibiotics (preventative in case bacteria found its way in during surgery) and explained the procedure to me. I then waited and waited and waited (shocker, right?).

I was asked by several nurses if laying flat was a problem for my lungs (which luckily it is not an issue at all for me), if I had ever been intubated (eek, no!), and how my lungs handle being put under (who knows??). They were clearly being cautious about my CF which started to make me nervous. I really had no idea how my lungs would react since the last time I was put under I was 14 and was significantly healthier than I am today. My oxygen levels were fine and the radiologist said I was moving air nicely so I figured all would be well. Right?

After waiting an obscene amount of time they finally wheeled me into the operating room...

Monday, November 18, 2013

Calming The PICC Reaction

Start here to follow my most recent PICC dilemma.

So the nurses and I are looking at my angry arm and trying to figure out what to do. At this point I had only received 2 days of IV antibiotics (I had the PICC one day before my IVs arrived) and I had 12 days of IVs left. We knew that if this reaction progressed like the last PICC I would never make it the 12 days. I felt like I was in the same position of deciding between the health of my lungs and the health of my arm. 

My dad, knowing how bad my PICC line reactions get, was researching without my knowing. He has access to a lot of medical journals and studies that the average public doesn't so he put it to good use. He found a few articles and brought them up to my PICC nurse. (You are never too old to be "rescued" by your dad). At the same time I begged for steroids- topical or oral. We followed the protocol my dad had researched and the doctor prescribed a topical steroid. 

We cleansed my arm with sterile saline and used alcohol only on my line and insertion site as to not irritate my skin anymore than it already was. We then covered the skin around my insertion site with topical steroid (with sterile q-tips while making sure not to contaminate the steroid cream which was also sterile). We used steri strips to hold the PICC in place despite the fact that they irritate my skin, but I needed something holding the PICC in. They then covered my arm with (sterile) Vaseline gauze because the regular gauze was sticking to my blisters causing the skin to tear off with each dressing change. We then covered my arm with sterile gauze and finished with coban. 

Within a few days my arm started to improve which was a wonderful change from last time when each dressing changed revealed a more damaged and angry arm. I actually started to get hopeful that I would complete the course of IVs without further complications to my arm which was a huge relief. The problem was that they needed me to come to the hospital for a dressing change daily. This proved to be a difficult task. They were open 9am-3pm and I needed to find childcare for Kaylee for my appointments. Since most people I know work finding someone to watch Kaylee for the 1 1/2 hours it took to go to the hospital was beyond stressful. Kaylee also learned quickly that I had to leave her everyday and she protested by becoming clingy and crying hysterically when I would leave which made it even harder to find someone to watch her. 

Somehow we made it work and I got through my 2 weeks of IVs (although I was allergic to Vancomycin and spent the second week covered in hives). Unfortunately at the end of my 2 weeks I caught a nasty cold which filled my lungs with mucus all over again. I did not feel as bad as pre-IVs, but I did not feel nearly as good as I should coming off of IVs. I was beyond frustrated and tried of being sick! 

I begrudgedly called my doc and asked for more meds and a Port. He gave me orals, and to my dismay told me to keep my PICC until my port was placed which meant more dressing changes and more time away from my daughter. They did change my daily changes to every 3 days since my PICC was not being used and my skin had healed relatively well. 

Nothing is easy when it comes to me, that is for sure!!

Friday, November 15, 2013

PICC Problems...Again!

It is no secret that my skin hates all things PICC related. I have talked about it here, here, here, and here, Oh, and here too! I have a severe allergy to pretty much all the tape they have ever used on my regarding PICCs.

PICCs have always been a huge headache for me and of course this last PICC line was no exception! Before this PICC my docs decided to cover my arm with all the possible tape they can use in a PICC to find out once and for all what I am allergic to. They even discussed my issue with the wound care specialists and the burn care nurses to find alternative tape choices. They also gave me a shot of lidocain and covered a patch of skin with skin protectant just to rule out all the things I could be allergic to. I was excited because once we got the results we would know how to keep my arm from turning into a heinous mess.

3 days passed and I had no reactions, not even one. Which I sort of expected since my reactions usually started several days into my PICC treatment, but it also terrified me. What if this test proved I was allergic to nothing? Then what? Where would we go from there?

By the end of the day my arm was a little itchy under the stat lock. I was instructed to pull off any tape the second I felt a reaction because of how horrendous my reactions get and how quickly they escalate. Sure enough as I pulled the stat lock off my arm the skin was bubbly, covered in puss and beet red underneath. I also noticed a slight reaction to the skin protectant. As far as tape, nothing reacted which was a huge shock for me. I was skeptical, but we decided to try a PICC with one of the "gentle" tapes that I did not react to and we would not use a stat lock, skin protectant, or chloroprep (which I already knew I reacted to).

The PICC was placed and all seemed well....for 3 days. And then, then the skin started to feel a little itchy so I called AIM. It was a Sunday, but they took my right away. Sure enough when they pulled off the gentle tape my skin was fire engine red, covered in puss, bubbly, blistery, a gory mess. We sat there dumbfounded. How did this happen again and what are we supposed to do now??

Thursday, November 14, 2013

My Very Last PICC

Last month I had what I believe will be my very last PICC ever (portacath here I come!). And like all my PICCs this one went in with a fight. This time, I did not have a resident place the PICC and the radiologist did not tell me that I should not be nervous because it makes her nervous. In fact, the radiologist was one of the nicest medical workers I have ever come across. The PICC placement however, was not so nice.

I went directly to radiology to have my PICC placed because the PICC nurses won't touch my arms anymore. After waiting an obscene amount of time, even for a hospital, I was finally brought back for placement. All seemed normal, I was prepped, the lidocain was injected and I felt the usual pressure and the distinctive, "Pop!" sound of the catheter pushing its way through my skin. And then another shot of lidocain which meant the first location didn't take. Rinse, repeat and repeat and repeat...

It felt as if time was dragging on forever, I lost track of the "Pops" and the radiologist was apologetic and so kind for having to poke me so much. I was having vasospasms which is when your veins clamp down because they are stressed out. I figure my body, being poked over and over, assumed I was being attacked and decided to clamp down to prevent blood loss. The problem is I was not being attacked by a bear or killer shark and I was not at risk of losing too much blood, I desperately wanted my veins open so the blood would flow and the wire could find its way to that magic spot above my heart. But my body, confused and misguided buckled down and demanded a fight.

The radiologist noticed that even with lidocain my veins would spasm so she decided to try the last one without lidocain. Luckily, I was partially numb and so over laying on that table I didn't care. Thank goodness the wire went through and we all cheered. At that moment I decided that I would never get a PICC again if I could help it and that I would call my Dr the very next day to schedule a port placement once I was done with IVs.

Too bad my crazy PICC story didn't end there...

Tuesday, November 12, 2013

17 Months

You are 17 whole months today and each month gets more lovely than the next EXCEPT this month. There were a few days I flopped on the couch and said, exasperated, to your father, "I am not having fun as a mommy at the moment." Don't get me wrong because you are my light, my heart, my soul, my life. But this past month was very challenging. The melt downs, the I do it myself when you clearly couldn't attitude. the tantrum, sigh!! Well, little one I really can't complain because I had it so much easier than you did, you got 4 molars all within the same two days and then with almost no break at all you got the top eye teeth. 6 teeth in one month just isn't fair, little bug. So you had every right to pout and whine and be grumpy!

Things You Like: Doing it yourself even when you can't. You want to be independent and grown up so badly. but you still have a ways to go. You want to dress yourself (when you are not on a clothes strike), you want to change your own diaper, you want to buckle your own car seat, wash your own hair, but you really don;t have the capability of doing any of these tings. It makes for slow moving days, but it is pretty cute watching you try to do everything yourself unless we have a deadline. When we have to be somewhere it is really frustrating.

Things You Dislike: You don't like certain strangers coming up to you and being too friendly. You will often decide to become "friends" with strangers (90% of the time it is men), but you want to be the one to choose who talks to you. You aren't necessarily shy because if you "like" someone you are super outgoing, but if the wrong stranger comes to talk you don't appreciate it.

What I Like About This Age: The other day your found a piece of paper on the ground in the living room. You ran up to me to show me what you found. I looked at it and said, "basura" (garbage in Spanish) and went about my business. I hardly noticed you run out of the room, but I absolutely heard the kitchen cabinet open. I decided to spy on you to see what you were up to. You were opening the cabinet where our garbage is and you you were throwing the basura in the basura! I had no idea you even knew what basura meant. You understand so much and you are a great helper. I love asking you to do or get things for me just because I am amazed and how much you understand. 

"Get your gub gubs (shoes)!" You run and get them.
"Can you get my phone?" She does
"Put your clothes in the hamper" She does.

There are little mis-communications though. The other day you were playing with my pot while I prepared the veggies for soup. When I asked for you to bring my pot back you ran from the room went into my bedroom and came back with a pair of my underwear from my dresser. Not so helpful when making soup.

New Words: You know all the animal sounds in Spanish (which are different than English. Who knew a rooster says, "kikiriki!" and not cockadoodledoo) She also says all the names of my immediate family. She is repeating everything now. She doesn't necessarily know what it means, but she has a great ear for repeating words in both English and Spanish. Although, we have noticed she sticks her tongue out a lot more when attempting Spanish words. 

Wednesday, November 6, 2013


Just after my last post my computer bit the dusk. At the same time my husband also had his wisdom teeth out which was about $900.00 out of pocket (because he has crappy teeth and so we used up our insurance allowance). I seriously missed blogging especially since the last month has been very hard on me CF wise. I really needed my blogging outlet as my therapy, but life had other plans. My computer is fixed (for now) and I am so relieved to have my free therapist (my blog) back. Hopefully, I will stick around this time.

Saturday, October 12, 2013

16 Months

**Had this in my saved drafts, but never posted. So lets just pretend this was posted in October**

Oh Kaylee,
You are 16 months old today and you love to talk about yourself in third person. The nice thing about this (besides how cute it is) is that you have held off on learning the word, "Mine!" Instead when you want something you say, "KyKy." and somehow that seems significantly less rude. My favorites are when I am eating something and you point to your tiny mouth and say "KyKy", how can I not share! You also love saying, "bye bye" to things like, "bye bye me me" (me me is light night night) when you wake up. Or when you finish eating you say, "bye bye num". You also use this to say, "get away from me" like when I am trying to change your diaper or put you in clothes.

Things You Like: You love love love your baby doll. You breastfeed her, you give her kisses, you shhh shhh her when she is sad. You bring her on walks and in the car. It is fun to see how loving and sweet you are to your baby. 

Things You Dislike: Now that the days are getting shorter you really despise when we are driving and the sun gets in your eyes. The first time it happened I thought you were dying in the back seat. Now I know that my little princess (who from day one acted like death was upon her when the sun shone into your delicate blue eyes) is simply shrieking and curing st the sun. It took you so long to learn to tolerate your car seat and now I get to relive the joys of hearing your screams in the back seat!

What I Like About This Age: Your attention span is so much longer. I can actually get things done around the house while you play with your books, puzzles, feet, whatever. Getting chores done is less of a chore because you are pretty content just playing by yourself. Most of the challenges about babyhood are a distant memory although knew ones naturally have cropped up. I am enjoying toddler hood more and more each day, tantrums and all.

Tuesday, October 8, 2013

One Of My Favorite Days

Two years ago today I found out that I would finally be a mommy with two little pink lines on a pregnancy test. I had no idea that day two years ago how much bliss, extreme laughter, overwhelming love, and joy the rest of my life would be filled with.

Thursday, October 3, 2013

Update On All My Natural Supplements

I have been researching a lot about natural supplements. I am no longer willing to do only as my doctor prescribes (although I will always continue to do all that he prescribes). There are so many other options outside of the medical world and as I feel more and more desperate to be as healthy as possible for my daughter I am now delving into the natural side of treating CF.

Part of me wants to start all the supplements I have been researching right away and see how it improves my health. The problem is I am the daughter of a scientist and so for me, this just isn't possible. I want to make sure each supplement works for me and that I can feel the difference. I don't want to waste time and money on things that don't work for my body.

I started juicing in April and after deciding I felt a positive difference, I enjoyed the taste, and genuinely liked juicing so I decided I continue to juice.

In June I started L-Glutathione and noticed a HUGE difference and loved the change. I decided it was absolutely worth my time and the cost. The first night of using it my mucus was so thin I actually woke up gurgling. This was such a dramatic difference that I instantly wished that I had done L-Glut since my diagnosis. But then, something not so miraculous happened. I started to feel tight. It was subtle at first, but over the next few days I felt much more tight to the point that I became hard to breath let alone move mucus at all. The only change I had made was L-Glut (which is why I didn't start everything new at once) so I immediately stopped it. I felt some relief within a day or two. In order to be a good scientist I want to try L-Glut again and see if it was a fluke (something in the air that made me tight like an allergen) or if it really was the cause of my extreme tightness. Honestly, I have been a little nervous to try again.

In July I started Fizzy NAC for the second time in my life. I felt like I had positive results two years ago when I was using it, but stopped when I got pregnant with K. I am not as impressed with it this time around. I don't seem to feel a huge difference, but my health has been a little rocky since I got the flu last winter and so maybe it is just harder to tell the difference it is making. I am still using it, but have not decided if I am going to buy another shipment.

In late June I started Liposomal Vitamin C. Again, I am not 100% convinced it does much. I haven't noticed the difference that a lot of my CF friends have noticed. I wonder if I was getting enough Vit C through my diet so I didn't really see a difference. Again, I am not sure if I will be buying more when my bottle runs out.

Wednesday, October 2, 2013

Finding Answers

Tomorrow I am finally getting assistance in finding some answers to my PICC problem. Apparently, my body is allergic to everything PICC related. The PICC nurses always assured me that this time, yes, this time they found a dressing that would not irritate my skin. As you can tell from the link above they are wrong every single time. In fact, my reactions keep getting significantly worse.

So tomorrow morning at 10 on the 5th floor on the hospital they are going to try to figure out what it is I am actually allergic to (everything??). I will be covered in the all the hypoallergenic, non irritating, gentle adhesives the hospital has to offer. I will be swabbed with all sorts of skin cleaning solutions (EXCEPT Chloroprep which is a death sentence to my skin), and I will even be injected with Lidocaine (apparently you can be allergic to the preservatives in it) just to see once and for all what it is I am allergic to. And if all goes well they will take what they learned to apply to my next PICC which should be placed early next week.

Am I pessimistic if I admit I am not 100% sure this will actually solve the problem? I swear I keep developing new allergies to anything PICC related. I worry we will find a solution only to realize five days in that I am actually allergic to it after all.

Thursday, September 26, 2013

Packing A Months Worth For Five Days

I recently went on vacation with the hubster and K (more on that later). We were gone for 5 days, but if anyone saw us packing the car they would have thought we were moving out! Seriously, we almost didn't fit everything in hubster's car!

I used to think that the amount of luggage I had to bring on vacation was crazy. Hubster is a light packer and I am a light packer when it comes to non-CF items. However, for CF I need my nebulizer, sometimes my Altera (depending on the month), my Vest, 5-8 vials of meds per day for nebs (I brought 30 total just in case), enzymes, neb cups, tubing, neb sterilizer, vitamins, and all my inhaled steroids. Seriously, it is a lot of stuff!

Add a toddler to the mix and the amount we needed to pack was insane! Diapers, wipes, snacks, car ride entertainment (3 hour car ride- eek!), clothes for all types of weather, carrier, you get the drift!

We may be in need of a bigger car!

Tuesday, September 17, 2013

Vertex Trials

I was officially rejected by Vertex! Of course, I was really upset at losing out on the chance to be a part of the study and the chance of getting access to potentially beneficially CF meds. However, after thinking about how everything played out I am actually glad I was not chosen for the study for a few reasons.

First, I am relieved that I can still nurse my daughter because she was not going to give up "boo boo" without a HUGE fight. It didn't help that she was (is) in the middle of getting her molars and all she wants to do is nurse.all.the.time!!!

Second, I desperately needed antibiotics from that last cold. I am back on Cipro and Bactrim which is usually my magic combo. I would not have been able to start the antibiotics right before starting the study. I am hoping this will help me get healthier so that when (if?) the drugs do become available I can get the most benefit from them.

Lastly, I found out at clinic on Monday that our clinic will be doing another Vertex trial for DDF508 in the near(ish) future! If all works out well I will try to get on that study unless they reject me again...

Thursday, September 12, 2013

15 Months

Things You Like: You love imaginary play! It is so fun to watch you play pretend because it makes you seem like such a little kid. You have been pretending to talk on the phone and shave for a few months, but it seems that imaginary play has really taken off this month. You pretend to feed you doll, you like to nurse toys on both my chest and yours, you pretend to wash your hair when you get a bath, everything is a screwdriver and anytime you see a screw whether at home or at the store you pretend to use a screwdriver to "take it out. You loved to pretend to be just like the abandoned kitty we found (and gave to a good home) by crawling on all fours barking (yeah, apparently cats bark), pretending to eat with just your mouth, etc.

Things You Dislike: Well, you have gotten to the tantrum stage that you can get overly furious when things don't go your way. I have already experienced the, "Oh my god, I am THAT mom in the store" feeling when you decided a tantrum was the best choice in letting my know you were mad. From what I hear this is going to get a whole lot worse before it gets better.

What I Like About This Age: You are growing so independent of me, but still rely on my heavily for support. You often want to play by yourself in the other room. You have to make a huge production about leaving. You say bye multiple times, blow kisses and wave. You then frolic into the other room to play for a few moments and come running back to make sure I am still around. It is pretty cute to see your independence emerge, but I am secretly glad you still want to make sure I am somewhat near you.

New Words: You talk all the time and you are getting better at using words appropriately. For example, you use "off" to mean "get off" (often to Gub Gub), "turn off" (the light), and "take off" (her shoes!). You also use, "bye" to mean that you/someone else is leaving, but you also (inappropriately) use to mean you are done with something. When you are done eating you say, "bye ana" (bye manzana). If you don;t know the name of what you are saying bye to (like a food/toy you aren't sure what it is called) you simple say, "bye daa dan da". It is kinda your catch all word.

You also speak more Spanish than English which makes me so excited. Your latest Spanish word (I kid you not) is "a guardar" (to pick up). We sing the clean up song in spanish (A guardar) whenever we pick up toys and K sings right along with us. Seriously, cool!

Tuesday, September 10, 2013

Gaining Weight and CF

Despite losing a lot of lung function I have somehow managed to gain most of the weight I lost when I got the flu despite breastfeeding a 14 month old. I was recently asked by a fellow CF mama how I successfully gained the weight back. I feel like I am slightly cheating by giving advice on gaining weight because although gaining weight has always been a struggle for me, I have always been able to get close to my goal weight. I have never been close to needing a g-tube so I know my struggle to gain weight is not nearly as hard as some CFers. If you are need of an extra 5-10lbs this may do the trick!

I gained the weight back by adding one small change into my life. Before I let everyone in on my secret I have to throw out this warning- although I find this trick to be delicious and work like a charm just the thought of what I ingest to gain weight makes my husband nauseous so I guess it is not for everyone. 

I have been drinking two Ensure Plus on and off for years and years. However, recently I started drinking both my Ensure Pluses in the evening with a little addition: 3 Tablespoons of Coconut oil. This is what makes my husband woozy, but I actually find it tastes pretty good! You do have to stir vigorously before each sip so that you don't get a mouth full of oil, but that is a small price to pay in my opinion.

Why do I use coconut oil you ask? First, it is the only oil that I could possibly bear to stomach in a drink. Could you imagine chocolate olive oil?? Gross! But chocolate coconut? Sounds kinda good. Second, coconut oil is easier to digest for CFers because it is digested by the liver rather than our damaged crappy pancreas. Now I have been cooking with coconut oil for years (and even add a little in my coffee), but I have never taken it in such large quantities. Let me do some math for you:

Three tablespoons of coconut oil has about 42 grams of fat and 390 calories. Add this to two Ensure Plus and you have 1,090 calories and 64g of fat. It seems really hard not to gain weight when you add so many calories and that much fat to your diet! Taking them at night means I am less likely to fill up on the Ensure during the day so I maintain my fat/calories intake throughout the day.

So there you have it, my little tip on gaining weight. Let me know if you try it and if you enjoy it like I do.

Sunday, September 8, 2013

Back From My Blog Vacay

I somehow didn't blog for the entire month of August. In the two years I have been blogging I don't think I have ever taken such a long break from blogging. The past month has been a little hectic, but things are calming down again and so I am going to get back to blogging.

One of the reasons my blog took a back seat this past month is that we purchased our very first home. Moving with a one year old proved to be a much harder task than I anticipated, but we are finally in and settled minus a few stray boxes in the garage.

I was recently screened to be on the Vertex drug trials for Double Delta F508s. I was so excited to be given the chance to start this drug trial even though I was really struggling with weaning my daughter as she has no desire to stop nursing. Unfortunately, over the weekend I got sick and my mucus is thicker and darker than I would like it to be. I know I need antibiotics, but I am not sure what that means for the trials. I am hoping I can re-screen, but am worried this cold will make me no longer eligible for the trial.

I had a few questions that were asked of me while I was on my blogging break so I am working on blog responses and they will be up very shortly, I promise!

Tuesday, August 6, 2013

Toddlers and Treatments

Treatments with a toddler are...interesting to say the least. Here is a glimpse:

I always set up and activity and a snack to buy me at least 5 minutes of uninterrupted treatment time. Today I had a bowl of water with different cups and spoons placed over towels. I also had a little bowl of black beans and her sippy in case she got hungry.

I start my albuterol while she plays in the water.
7 minutes (tops) later...
K- "Pee pee! Pee pee! Peeeeee peeee!"
I run over remove her diaper and sit her on her potty.
So I start treatments again.

K- "Peeeeeee peeeee! Peee peee!" 
I run over again and sit her on the potty
I start treatments again and suddenly little naked Kaylee is peeing on the floor. Sigh.

K- "UUUUUP! UUUUP!" She is a smart kid and the second she has an accident she wants to be picked up. No way is she going to chance walking through the puddle.
I pick her up and move her to a safe non-pee infested area, cleaned the pee and then start HTS.

K- Spots her cd player, "Bom Bom" (her way of saying music) She knows how to turn it on so between breathing in and coughing wildly I encourage her to push the big (play) button.

K- "Bom Bom! Bom Bom! Bom Bom!" As I encourage her to turn it on she is flopping around the floor whining, "Bom Bom!" I turn it on. She dances wildly while I continue to cough violently.
She somehow finds a pen (must have fallen out of my husbands work pocket last night) and clicks it open and is headed for the couch. I intercept just in time.

K- "Boob boob. Boob Boob!"
I pull my shirt down, exhausted at entertaining while nebbing, she runs over and latches for a few minutes. She then waves to my boob while saying, "bye bye!" and puts my shirt back in place.

K- Pointing to the other boob, "Boob boob"

Needless to say treatments are a lot longer, less focused, and a little more hectic with a toddler in the house.

Tuesday, July 30, 2013

The Best Kind of Friend

Life has a way of beating you down when you least expect it. After feeling amazing, exercising, and enjoying my summer I was shocked to lose 15% of my lung function in what seemed like overnight. Life also seems to have a way of lifting your spirits when you need it most.

A week ago I was venting to my very best friend on the phone. Despite living six hours away she has been my constant support through all the hardships life has tossed my way. I was telling her about my lung function drop and how much it effected my energy, my spirit, my life. She listened to everything that was bothering me and responded with all the right things because after 17 years of friendship she just knows what I need to hear. I felt better just letting everything that was swimming around my mind go free.

Fast forward to this past Wednesday. I was home with my daughter when I received a text from my friend saying she was in town. She drove six hours through the night with her one year old son to be there by my side during an extremely hard time in my mommy life. She came to help me with my treatments, my daughter, my housework, my sadness. She stayed in a hotel nearby and came to my home to clean, to chat, to love on my daughter. The four days she was here I was able to do my treatments while someone (well two someones- my bff and her baby) entertained my Kay. I had someone bring me coffee, dinner, and do my laundry. I had someone to lift my spirits and remind me that I have backup when it comes to dealing with CF.

My lung function is slowly, but surely going back up. I have 6% till baseline, but that is a huge improvement from the past few weeks. CF has a great way of bringing down your spirits, but lovng friends have great ways of bringing your spirits back up.

Tuesday, July 23, 2013

What Went Wrong

Continuation from my last post...

We both agreed that I did not have a major infection as I did not have any infection symptoms. After listening to my lungs he thought, due to little air movement, that I was just full of mucus. I was a little baffled as nothing had changed. I had been completely compliant with treatments and I had been exercising. The only explanation the doctor could give was that because of a heat wave (it was between 108 and 111) for a week straight that I may have gotten dehydrated and so my mucus got dried out and stuck. This made sense to some extent. I have had lung function drops in the past after extreme bouts of heat, but the drops were usually a percentage or two, not 15%!!

My husband and I decided to take a spontaneous trip to the ocean so that I could breath in the salty ocean air. I always feel better by the ocean and even though we only live a little over an hour away Kaylee had never been to the ocean. While at the hotel, I discovered what may have been the biggest issue with my lungs. I was nebbing and realized that it was taking a really long time. I looked in the cup and realized after 20 minutes it looked as if I never even started treatments, the cup was full. Suddenly, things started to fall in place. The prior week I noticed my neb was a little slow and had replaced the tubing twice in one week. I also noticed I wasn't coughing much during treatments, but thought it was because I was swimming so much that I didn't have a lot of mucus to move out. I realized that my neb (which was only a year old) was dying on me, but I really wish I would have discovered it sooner. I think the combination of the heat, dehydration, and a broken neb is what destroyed my lungs.

The good news is now I can work on getting my numbers back since I know what went wrong. I also don't have an active infection so it shouldn't be too hard (hopefully) to get my numbers back. The other interesting aspect is it proved to me how vital my treatments are. I absolutely would not be alive today if it weren't for albuterol, hypertonic saline, and pulmozyme. Missing a week (or two) of effective treatments proved that to me! It makes all the time I sit doing nebs feel worth it even if it is a pain.

The only glimmer of good news is that I gained a lot of weight! I am not quite back to baseline, but I am very very close! Hoping by next clinic I will be back to 125lbs!

Monday, July 15, 2013

Lung Function Dropped 15% in 15 Days

It has been an eventful two weeks here in the Hope home and by eventful I mean terrifying. Let me back up to two weeks ago (give or take)

Life was grand at the end of June. Summer was in full force and I was feeling great. My days were spent in the garden tending to my vegetable plants, cooking obscene amounts of food from produce picked from said vegetable plants, swimming almost everyday, and spending time with my new little nephew. I felt really healthy and CF was behaving for the most part.

What felt like overnight I started to feel a little bit more congested and full in my lungs. I started waking up with a cough in the night. I started to feel a little more CFy (so not a real word) than usual. I had a clinic visit in a few days and didn't feel like I had an infection so I wasn't overly worried and made sure to keep up with treatments.

The weekend before clinic (why does everything bad happen over the weekend) I could tell something wasnt right. I did not feel like I was getting enough air even when I was completely inactive. My husband and I went to the pool (Kaylee too) and as we often do we had little competitions in the pool (while Kaylee was the official judge). You know, competitions you have in the pool when you are seven years old, yeah we still havre those. This particular day we had a treading water competition- I totally won, but could seriously tread water for hours...hubby on the other hand can last about 30 seconds before the lifeguard needs to be called in. Next, we wanted to see who could stay on the bottom of the pool longest. Hubby sinks like a rock, I float so I made it about .02 seconds and totally lost. I blame it on air pockets in my damaged lungs, but hubby doesn't buy it. We then tried to see who could swim underwater furthest without taking a breath of air. This is actually a fair fight because he holds his breath longer, but I am a much faster swimmer so it is always a close match. This particular day I lost so horribly I was actually ashamed. I knew my lungs were bad at the moment, but this was just depressing! After our competition I had to do my laps, but after 3 laps I felt as if I couldn't breath. I just couldn't catch my breath and had to get out of the pool to sit down. I was terrified for clinic the next day.

At clinic the doctor came in and I explained what was going on. I thought maybe it was an asthma flare up so he listened to my lungs. He quickly ruled out asthma as my lungs were quiet...too quiet. In fact he heard very little air flow. This was not good. Next, I got my FEV1 results. I was 15% below my low end baseline, 20% below my high end baseline. I am not sure I have ever seen numbers that low and the thoughts racing through my head were terrifying. How could I go from feeling amazing to completely breathless in such a short period of time with no sign of infection? I almost did not want to hear what the doctor had to say.

Up next- What the heck happened and what happened at todays clinic (one week later).

Saturday, July 13, 2013

13 Months

Dear BuggyBoo,

You are 13 months today! My Nana (your great-Nana!) said from 1-2 years is her absolute favorite age and now I know why! You make Papi and I laugh all the time! You are getting to know your world and trying to find your place in it which is fascinating to watch. You know what you like and dislike and make it known- sometimes to our pleasure and sometimes to our horror! You ask for things now using the limited vocabulary you have and you tiny pointer finger. For example, your Papi plays a game where he takes of his shirt and whips it to make wind in your direction and then throws it over your head. You LOVE it. Whenever you see his undershirt you pull at it saying, "mas, mas, mas"

Not only do you know what you like and dislike, but you also stand up for yourself which I love to see. You are a strong little girl and I know will grow up to be a strong woman! Once in Spanish class a little boy wanted to take your toy. You buried it in your arms and ran away saying, "no no no!" Everyone in the class was laughing because it was so cute.

Things You Like: You love to reenact everything Mommy and Papi do. You try to put on my shoes, you try to put on your own shoes, you try to put on my sunglasses, and everything is a cell phone. Your cell phone conversations go something like this: "hi, dada!" "lalala(which sounds almost like a yodel)"....(fake laughing and bending over because you are "laughing" so hard)..."lalalala" (more fake laughing)....bye!

Things You Dislike: Clothes and especially diapers. You are my little nudist and since it has been so hot you stomp around the garden in your birthday suit. It is hard not to smile seeing you marching around naked! 

What I Like About This Age: I love that you understand humor now. Sometimes you will pretend you are going to bite our toes and then pull away at the last minute laughing. You love to put things on your head because you know it is silly. You also totally get when we are trying to be silly too. It makes for such fun interactions.

I also love that you are more socially aware. Papi and I were eating at a restaurant the other day and there was a group of elder women at the table next to us. You were intrigued (and not yet socially aware that eavesdropping is rude) and watched them the whole time laughing when they laughed, looking serious when they were serious, and chattering away with your babble when the conversation got lively. 

New Words: Nana (my mom), Papa (my dad), ojos (eyes in Spanish), ball, ouch, hot, agua (said perfectly now), bom bom bom (when you want to hear your song, bom bom bomberos!), and of course pee pee, poo poo.

Tuesday, June 25, 2013

And So It Grows

I became an aunt June 23rd, only 1 year and 11 days after I became a mother. I am so excited to share the journey of motherhood with my sister. She is already such a natural mom to her little boy. I am totally obsessed with him; he is absolute perfection!! Kaylee is completely smitten with him! Upon meeting him she was all smiles and kept reaching out to touch him. She was pretty much in love with him until he was placed in my arms. Then she was kinda pissed. I guess she doesn't like sharing her mommy! I cant wait to spend the rest of the summer (and the rest of my life) playing, snuggling, and loving on that little boy. There is nothing more magical than the snuggles you get from a newborn!

Friday, June 14, 2013

A Walk In My Garden



A strawberry runner that has another runner.

My zucchini is taking over my garden!

My bottomless bowl of zucchini thanks to the plant above.

Wednesday, June 12, 2013

12 Months

My Little Love,
You are one whole year today! This journey we have been on, you and I, is made of pure magic. I am grateful every morning when I open my eyes to your bright little face that you and I are in this life together. You fill my days with joy, my heart with pride and my soul with love. You bring more joy, sunshine, and immeasurable love to my life and I can only hope that I do the same for you. You are my everything little one! You have changed so much over the course of a year it makes me dizzy to think about. This past month you started to run! Yes, run! You have also become quite independent and although you always comes back to check in with mama you have no problem exploring your world without me. 

Things You Like: Other kids. You make friends everywhere you go. We went to Fairytale town and out of nowhere a little girl came up and held your hand for a full minute before her mother called her away. At the park the other day somehow all the kids congregated around you in the sandbox to dig by your side. You love other babies and they love you back! You absolutely love birds. When you see or hear a bird you yell, "DO DO!" (short for pato- duck in Spanish) and point to the shy with your little "oh!" face. You also loves airplanes. When you hear one you point to the sky (again with the "oh!" face). 

You also love to play with your truck outside while making "brooom broom noises. I love that you play in the dirt, push trucks around, but also are a little princess who loves baby dolls and dresses! You are also a little artist who loves to play (and eat- eew) chalk and color. 

Things You Dislike: Clothes and especially diapers. You are my little nudist and since it has been so hot you stomp around the garden in your birthday suit. It is hard not to smile seeing you marching around naked!

What I Like About This Age: I love that you understand humor now. Sometimes you will pretend you are going to bite our toes and then pull away at the last minute laughing. You love to put things on your head because you know it is silly. You also totally get when we are trying to be silly too. It makes for such fun interactions.

New Words: You now cheer for yourself (and at times for others) by saying, "yay! It really is the cutest thing. You like to clap and say yay for just about everything you do. You can also say, "ball", "hot", and agua now comes out as "AHHHHHH" which we think is adorable. You still love saying, "No". You make your lips so teeny tiny in a little o shape when you say, "no, no, no, no" and it really is the cutest thing. You love to mimic noises which is too much fun.

You, my love, made all my dreams come true that Tuesday evening in June and for that I will forever be indebted to you! I can't wait to see what this life has in store for you, papi, and me!

Friday, June 7, 2013


The future with CF can be scary. As I have gotten older I worry more about my health and try my hardest to do everything I can to be as healthy as possible. These feelings of wanting, no, needing to stay healthy have become so much stronger since having Kaylee. I want so badly to see her grow up and I am willing to do anything I can in order to make that a reality. I have been trying to make changes to my life to ensure I stay as healthy as possible for as long as possible.

A few months ago I started juicing. I have a lot more energy since I started juicing which is very welcomed considering I have a busy body one year old to chase all day. The biggest improvement juicing has made has been to my digestive track. A while ago I complained about my Zenpep not working so well for me anymore, but it seems since I started juicing I have not had any digestive issues at all! Having a healthy digestive system makes life more enjoyable, but I haven't noticed a huge difference in my lungs. So I decided to tackle the lung issue next. (I am sure juicing is making a difference in my overall health including my lungs, but I wanted a more dramatic improvement)

I decided to start inhaling L-Glutathione. I ordered a bottle from theranaturals and decided to give it a try. I got the bottle yesterday, but kept chickening out when it came to actually nebbing it. I felt strange taking something that was not prescribed by my doctor, but I have done a lot of research and talked to other CFers who are on it  so I really do feel comfortable trying it. I decided today was the day. It had a mild sulfur smell and the flavor wasn't much better, but if it helps it will be completely worth it!

I will let you know if I notice any changes over the next few weeks. Stay tuned!

**I am in no way recommending or advising others to use L-Glutathione. I am simply giving my personal experience**

Wednesday, June 5, 2013

Exercising in Summer

It is not officially summer yet, but summer weather has arrived. Kaylee and I find ourselves sweaty after our  morning excursion in the vegetable garden so of course jogging has been put on hold for now. I find summer the hardest time of the year to fit in exercise. The weather makes strenuous outdoor exercise difficult and our days are so full it is hard to find the time for a good workout. Although our days are full of walking and biking I find these do very little for my lungs.

This year I found a solution! Literally right across the street there is a membership pool. Community pools are not ideal for exercising, but this pool is a little different. Every hour on the hour there is 20 minutes of adult swim. All kids have to get out of the pool and adults are allowed to do laps. For our little family this is perfect. We head over to the pool around 4:15. We all swim and play in the pool for about 45 minutes. Then my hubby and Kaylee get out and have a snack break in the shade while I do my laps for 20 minutes. When Family bonding time, exercise, daddy/daughter time, and sunshine all wrapped into one. Now I don't want summer to ever end!

Saturday, June 1, 2013

Our Start

The start of June will always make me think of the start of our journey together...

It was the last few moments of a Tuesday evening that brought you into the world. The day was so stifling hot that even the cool evening breeze couldn't calm it. The room was dim and quiet, your father and I silently waiting your arrival. Each time I felt my body tightening, squeezing, pushing you from your safe place in my womb, I pushed with every ounce of my being to bring you into my arms.

I remember the first moment I saw your face, the quick release that allowed you to peek out into this world you had only heard murmurs of  from inside the womb. I remember that moment when you were between two worlds, that of the safety of my body and the giant one that lay before you. Your eyes were open, taking everything in, your mouth was open, already trying to call to me. It was mere seconds and yet in my mind that moment felt like hours. I turned to my husband, seeing him instantly transform from an ordinary man to a father. His eyes teared up and I saw the love he already felt for you.

With one more push the midwife had me reach my hands to you. I would be the first to hold you, meet you, love you. I pulled you to my chest and listened to the beautiful cries that sprang from your throat. You were instantly curious, looking to find my voice purring how beautiful you were and how much I loved you. You lifted your head to try to see my face. To meet this woman that had cared for you, talked to you, loved you, lived for you, for your entire existence.

The room was kept cool and yet there was the warmth of love surrounding the two of us. The warmth of our separate bodies, once joined, wrapped snugly around one another. The warmth of our breath, your very first breaths, on each other's skin. The warmth of my heart, which I once thought was full, spilling over with love for you: my heart, my soul, my life.

It was the quiet on that Tuesday evening that I was born too. My heart was changed, my mind was changed, my love was changed forever. My entire being had changed because at that moment, 11:13pm, I was reborn into a mother, into your mother. And for that I will forever be grateful.

Tuesday, May 28, 2013

Cloth Diapering a Toddler

There seems to be a lot of talk about cloth diapers lately among the CF mamas I know so I thought I would do a follow up on cloth diapering now that I have a toddler. Be forewarned this is a diaper post so of course bodily fluids are mentioned...

When I first started cloth Kaylee was exclusively breastfed so cloth was extremely easy. If she had a dirty diaper I would take it off and throw it in a wet bag (although later I realized I much prefer pail liners) and be done with it until I did diaper laundry.

Around 6 months my little nursling was introduced to solid food. I absolutely loved giving Kaylee solids and it was always exciting seeing her experience different textures (we did baby led weaning) and tastes for the first time. However, I hated solids when it came to diaper time. I will spare you the details, but once babies are introduced to solids their diapers need to be cleaned off before being put in the laundry. The problem is their poop is not completely solid yet. Yeah, it as gross as you are imagining. There were a few days that I questioned my cloth diapering ways and I even debated buying flushable liners to make this process a little less gross.

Then one day I removed another poopy diaper and to my delight (yes, I used the word delight while talking about poopy diapers) my daughter's transitional poop had turned into (little) big kid poop. This is like winning the cloth diaper lottery because rather than trying to clean sludge off a diaper you simply let the contents fall off the diaper into the toilet and flush. So simple!! We are officially consistently getting (little) big kid poop and cloth diapering is even easier than when she was a newborn. I am officially back to loving cloth diapers.

Now that Kaylee is bigger the cloth is slimmer on her so I love the way she looks with her fluffy butt. With summer just about here I feel less guilty about letting her run around outside without clothes on because her diapers are a fashion statement by themselves. The biggest challenge I am currently having with my cloth toddler (besides the typical toddler who refuses to lay still during a change) is that she has figured out how to remove the velcro diapers and the kid is a nudist at heart so we are sticking to snaps. Overall, I have absolutely no regrets about my decision to cloth diaper and would recommend it to anyone even considering cloth. 

Monday, May 27, 2013

Homemade Wipe Solution

Before I became a mother I had all these ideas about what type of mother I wanted to be. If you have read my blog you know I am a little crunchy and don't buy conventional beauty products. I don't buy conventional baby products either. So in addition to cloth diapering I decided to make my own wipes. There are lots of tutorials out there on making your own wipes which I followed in the early days. Once I got into full time cloth diapering I realized cloth wipes were easier than making your own disposable wipes. Everything goes in the wash rather than throwing wipes in the garbage and diapers in the laundry. One experience of a homemade disposable wipe in the washer with the diapers (what a mess!) made me forever switch to cloth wipes.

The thing I love about cloth wipes is that the wipe solution I use is extremely versatile. I use it to wipe a dirty bottom, clean dirty hands, and can even use it as a face wash for myself. It is super easy and super cheap. In honor of reduce, reuse, recycle I used my peri bottle from the hospital to hold my wipe solution. It is the perfect size and since it is a squeeze top I can close it so little hands don't spray solution everywhere and I can control how fast the solution comes out onto the wipe.

Here is my wipe solution (I never measure and have never had a "bad" batch of wipe solution)

  1. Clean and rinse peri bottle
  2. Put a small glob of coconut oil* in bottle (other oils can be used as well. I originally used Mother Love Apricot Birthing Oil because I had it on hand and it worked just as well)
  3. Put a small squirt of California Baby Body Wash (or other baby soap) in bottle
  4. Fill with warm water
  5. Shake
How simple is that! I have never once purchased baby wipes from the store which saves money and I like knowing my baby's bottom is preservative free!

*I should note that coconut oil is solid in cooler weather. I found that if I vigorously shake the bottle before spraying the oil breaks up into little clumps and would come out with the water onto the wipe in small amounts which worked just fine. Now that it is warmer I never have this issue as the oil is in liquid form. If you live in colder climates and the clumps bother you I would suggest a different oil.

Thursday, May 23, 2013

Missing Meds

It seems that every few months something happens that prevents me from getting my meds. Sometimes I will admit it is partially (or fully) my fault. Like the time I needed HTS, but the pharmacy ran out. I probably should have put in the order before I was really low of HTS vials. Other times I really had no control over the issue like when my insurance suddenly said I was never insured by them despite having the same insurance for almost 10 years!

Well, it has happened again. I started to realize I was running low on my HTS and Albuterol so I called in my meds. I get my meds form an online pharmacy so I have to wait for them to be delivered. The lady said it would be shipped "one day delivery" so I assumed it would arrive the next day. This is new as it has always been a few days and you could get overnight for an extra fee. So when the package didn't arrive the next day I just assumed (that was my first problem right there!) it would arrive the nextfollowing day since I did not pay the extra fee. The next day it didn't arrive and I started to worry. The problem is that the pharmacy is on Eastern time which is a three hour time difference so their office closes at 3 (my time) and mail doesn't arrive until 6 my time. By the time I realized the package did not arrive my pharmacy had been closed for over three hours.

I called the pharmacy first thing this morning. Apparently, my Advair can not be filled until next week so they did not send any of my meds. They were waiting to send them all together. I have about 3 extra Advair left over from pregnancy that I did not need to use, but have no extra Albuterol and HTS. I wish they would have told me because I really did not even need to fill Advair. So my meds are arriving tomorrow (except Advair) which means tonight I will not have any Albuterol or HTS. Sigh. Yes, it was partially my fault. I should have called yesterday so they would have straightened everything out and I would have gotten the shipment today. I should not have assumed the package would arrive. I should have learned my lesson by now. Apparently I am a slow learner.

Monday, May 20, 2013

I Shocked Myself!

Why you ask? Because today I went jogging!! Yes, Inhaling Hope, who does not run no matter the circumstances went jogging! I laced up my shoes, put Kay in the jogging stroller and instead of our usually leisurely walk I decided to jog (relatively slowly) instead.

Now I know many of you (especially you marathon cysters and fibros) are shrugging your shoulders, what's the big deal? The deal is that I am a swimmer. I love the pool, I love doing laps, I love the cool smooth feel of the water. I am not a jogger, I hate to jog, I hate sneakers, and I hate the feel of hot hard concrete. BUT I can't swim everyday and I am having this intense need to be healthier, stronger, more fit. I am watching my daughter grow older and more active and I want to keep up with her. So today, and from now on, I am a jogger.

I told Kay as we started walking on the greenbelt that I was attempting to jog and that I could not guarantee success. Lucky for me she was too busy saying, "dog dog woof woof!" to really care about my plans. I told myself when I turned the first corner I would start to jog. I put my stroller jogging strap on (which is a joke because I was running .00004 miles per hour and it isn't like the stroller would wildly lose control if I fell to my death, but safety first I guess!) and off I went. For the first 3 seconds I felt good. In fact I think I liked it for the first 7 seconds. About 30 seconds in I remembered why I hate jogging, but I pushed that annoying voice to the back of my head and kept at it. At 1 minute in I remembered I only have 50% lung function and started to breath heavy (is that normal so soon??). At 2 minutes in I was already in this sucks mode. But the good thing about jogging on a greenbelt is there are other people to impress. Not that any of those dog walkers, bikers, or senior citizens cared about my slow motion jogging, but in my mind they would be thinking I was a super out of shape loser if I stopped jogging so I kept at it. I jogged for what seemed like 3 miles, but I think it was only about 1/4 mile.

My goal for the rest of the summer is to swim 3-4 days a week and jog 3 days a week. I feel so motivated to kick CF's butt!! I will keep you updated on my progress.

Saturday, May 18, 2013

No Cayston??

I am allergic to every inhaled antibiotic except Cayston so it has truly become a lifeline for me. My health improved dramatically after starting it and I was able to go three years without a PICC which is a good think because I am allergic to everything involved in PICC lines. I also got through a healthy pregnancy thanks to Cayston. The past several months have been tough on my health and I was relieved in the beginning of May when I knew I would be starting Cayston since I always feel a lot better during my "on" months.

Two weeks into my Cayston month I went to do my morning treatment and as usual pushed the on button without paying much attention. As I was sitting their doing my treatment I realized that nothing was coming out of my neb. I looked down and say my machine was off so I pushed the on button again. The light turned green and the welcome screen appeared only to instantly turn off. I figured it wasn't plugged in all the way so I double checked. It was plugged in perfectly. I tried again. Nothing. I moved outlets. Nothing. I tried using batteries. Nothing. I started to panic internally for a second. I didn't want to stop mid-month and I really needed these antibiotic as I have been feeling tighter in my lungs lately and want to stay on top of my lung health. 

I called Altera expecting to answer a million questions or troubleshoot. To my shock they looked up my machine which is registered under my name and said they would overnight a new one. Sure enough the very next morning I had a brand new Altera on my porch. I did miss 3 doses and noticed the difference since I coughed a lot throughout the night after my missed treatments, but I have to admit I was pretty impressed that within 12 hours I had a new machine. So I am back on the Cayston train and just hoping my tightness dies down before the end of the month.

Wednesday, May 15, 2013

CF Awareness Month Blog- CF & Kids

Kaylee is only starting to talk and has a limited vocabulary, BUT she makes it clear that CF is already a big part of her life. I have 3 cute stories to share about CF and Kaylee.

  1. Whenever she sees my Albuterol puffer she holds it up to my mouth and then blows. I don't think she knows that I actually breath IN rather than blow out. It really is beyond cute, but kinda sad that she already knows what a puffer is.
  2. She thinks my nebs are the coolest thing around. Whenever I do treatments she wants to pull the neb from my mouth and suck on it too. I gave her a neb that only she can use and whenever she wants my neb I tell her to go get hers. She keeps it with all her toys and will walk over grab it and chew, suck, or make noises into her neb while I do my treatments. It is pretty darn cute. After having a past that CF was something we didn't talk about I am trying to normalize it and make sure I am open and available to Kaylee if she ever has questions about my treatments or CF.
  3. She performed CPT on me which I talk about here!

Sunday, May 12, 2013

11 Months

Dear Kaylee Marie,
You are 11 months old today! Only one more little month and you will be a whole year! I know it is probably because I am your mom (and I am sure all moms think this way), but I think you are the smartest baby on this entire plant! You have grown and changed so much I feel I need to write a novel, but I will try to just mention the highlights.

You have mastered WALKING, little one. What a big accomplishment and you absolutely love walking.You also try running sometimes. You have this game you play with Papi that he hides behind the corner and you walk down the hall. When you get close to him he jumps out and chases you. You turn around and run until you fall and crawl away, laughing the entire time. The only thing you love more than walking is dancing and baby girl, you have some amazing moves! You dance while sitting, standing, or squatting. you never miss any opportunity to dance!

You also love to let mommy have a turn. When I read you a book you have that has textured pages you like to hold my pointer finger in your hand and make me touch the texture so I can feel it too. When you eat or drink anything you like to hold it out so I can taste it. You like to turn off the light and sometimes you reach for my finger and make me turn off the light. You love to include me and I love that about you!

You are an amazing communicator and not just with words (more on that later). The other day you had your first big fall while walking. You were walking out of your room when you fell and bumped your head on the door frame. You cried, I snuggled you and all was well again. You then looked at me, walked to the door, pointed to it, squatted down and in slow motion gently bumped your head against the same spot you bumped it before. You then looked right at me and pointed to the door frame again as if to say, "that is what happened!"

Things You Like: Blowing on dandelions. In fact you love it so much that sometimes you try to blow other random flowers hoping the petals will blow away like the dandelion seeds. You love the palm trees in our front yard, seriously you just love them! You love airplanes and get excited and point to the sky whenever one goes by. You also love opening and closing your hand. You do this when saying, "bye bye", but you also like to do it when I sing a little song about opening and closing our hands.

Things You Dislike: You are a pretty easy going kid, but you absolutely are hitting that, "I do it" stage. You want to do everything yourself and get frustrated when you can't. You like to hold your own glass to drink water and you are pretty good at it, but then you want mommy's glass and if I say, "no" you get pretty upset at me because you want to do everything I do.

New Words: Oh, how you love to talk and you seem to learn words so quickly. Here are your newest words: no no (you make your mouth really tiny for this and you wag your little finger), do do (with a hard O) for pato (duck in Spanish), do do (with a soft O) for dog. You also know what sound a dog makes, "woof woof". You can say 11 words and you are only 11 months old! See, I may just be on to something with this smartest baby ever thing...

Saturday, May 11, 2013

So It Has Begun

I am taking a tiny break from 31 Days of May The CF Way to mention my very favorite time of spring. It is the time of the year when the days are long and hot. When the irritation of allergies has faded. The hard work of planting your garden is done...

And you reap the benefits!! I put in my garden April 3rd (my birthday) and it is just now exploding with life!

Kaylee and I garden every morning and the first thing she does is look to see if there are ripe strawberries on our twelve (yes, twelve) strawberry plants. She gets beyond excited if she sees one. She starts squealing  "Num num" (her way of saying she wants something yummy) until I pick it for her. Needless to say my husband and I have not gotten even one strawberry yet...the girl loves them!

It got hot fast this year so I think this will be the last of our beans until fall...

 But my favorite summer vegetable (technically a fruit) is just starting to produce fruit! This tomato plant along with one other has already grown out of its cage. We have three regular and one cherry tomato plant.

One of Kaylee's favorite- squash just starting to grow!

This year we have:

  • 45 onions
  • 12 strawberry plants
  • 12 snap pea vines (that will be dying off shortly)
  • 2 cucumber plants
  • 4 tomato
  • 1 zucchini
  • 1 squash
  • 6 jalapeno
  • 1 habanero
  • 2 different varieties of basil
  • Lemon Balm
  • Mint
  • Lavender
I am excited to see how well we do this year since our crop last year was just okay. I think giving birth in the middle of summer, never weeding after baby came, and then forgetting to water for waaaay too long didn't help our crop last year. I am so excited to feed my family organic home grown food this year!