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!