Sunday, April 13, 2014

Guest Blogger- Shannon

It has been a while since we have had a mommy interview so I am really excited to introduce our newest CF mother, Shannon! Shannon is from the blog, CF Happens which details her life as a wife, as a future author, a CF fighter, and a bonus mom to teenagers! I may some tips from her in about 12 years!!

Everyone that has CF seems to have a very different experience. Share a little but about your CF story or how CF affects you.  
I was diagnosed at 5 months old.  I didn't start needing IVs, "tune-ups" and hospital stays until I was 13 years old.  I am on IVs about 3-5 times a year.  Some years are better than others.  I have am very stubborn so that helps me push through at times.  My motto is "never give up."  I don't want to fail and let CF win so I push the limits.  I want to do all that I can right now because I know there will come a time that I am unable to do them.  I don't want to say "I wished I did_____."  I would rather say, "I did the best I could and got to experience a lot."

Tell me a little about the term bonus mom you use to describe your role as a parent.
We came up with the term bonus mom because step mom's in all the stories and movies are usually evil and mean and I am not.  We said bonus because that is what I am in the kids life, a bonus to the 2 parents they already have.

Tell us a little about your bonus kids and family dynamics.
My bonus kids are great!  I love them as though I gave birth to them.  I would do anything for them.  We have 1 graduating high school next month and going off to the college and going into theater which she loves very much.  Our youngest is turning 14 next month and going into 9th grade next school year.  He loves sports, anything sports.  Our family flows well as a whole unit.  We each have our roles and jobs to make it run smooth.  We have taught our kids that you have to do your part in the family to contribute, it is not all 1 persons job to take care of the house while the others do nothing.  We try our best to teach life lessons whenever possible because we want them to be able to survive in the real world when they are out of our house.  We are a team, no one is left alone. 

Falling in love and starting a new life with someone is a big change! Add kids to the mix and it is even more complicated. How was the adjustment going from single to an instant family of 4?
My husband and I grew up in the same town and went  to the same school.  We have known each other for 15+ years.  We both married other people, got divorced and reconnected after many years via Myspace of all places. haha  He was in Korea at the time, he is in the Air Force.  When talked while he was there and when he got home we went on a date and that was the beginning of forever!  I didn't meet the kids for a few months and when I did, I was dad's "friend" not girlfriend.  We were very respectful of the kids because it is hard enough when your parents are divorced but when one of your parents starts dating it can be devastating.  We slowly did things as a group with the kids as friends.  We didn't want to throw me in their life if we didn't know if it was forever or not.  Once we knew my husband asked the kids for their thoughts on us being boyfriend/girlfriend before we made it official.  They were fine with it so then it was official.  We were very careful when it came to the kids.  I always wanted to be a mom but I didn't know it was going to come this way.  I am very thankful and blessed for these kids.  I have been around kids all my life so going from single to family of 4 wasn't that big of an adjustment except for learning where I fit.  I am not their mom and never will be but I am their step/bonus mom and I take that very seriously and am very proud of that.  We just had to find the balance from when the kids were with us and when they were with their mom.  We have a good system after all these years.  It has been 7 years that I have been in their life.  I am very blessed that I get to be a part of raising them to be loving, caring, law abiding, thriving adults.

How did you explain CF to your bonus kids? How did they take it?
We explained CF to them this... I cough a lot, that's just what I do.  I have to go into the hospital sometimes and do medicine at home to make me better because the pills and liquid like you take don't work.  I have to do breathing treatments to help me breathe good.  It didn't even phase them.  They liked sitting next to me while I did my vest so they could fell the vest.  They liked to help me get my stuff ready for treatments and IVs.  Now that they are older they don't even notice or think about it.  When their friends come over and I'm doing a treatment my bonus son will say, "oh she has CF, she has to do these to help her, it's nothing big."  He then is on his way to play x-box or outside to play.

As the kids got older did your discussions of CF change? Do they share concerns or worries surrounding the severity of CF?  
We don't really talk about it, but they know that they can talk about it whenever they want.  As they got older it has become just like washing the dishes, it's something I/you have to do.  We have had some heart to hearts about CF and what it means.  They know that I am here and not going anywhere for a long while.  They know that it will get worse as I get older.  My bonus son told me once that I couldn't die until he got married and that he will never get married.  Well played child, well played.  We are a very open family and talk about anything so whenever fears or concerns come up they ask or talk about it.

Does CF ever seem to get in the way of your role as bonus mom? If so, how?  
It does when I am in the hospital and can't do the normal running around that I do for them.  I hate being in the hospital and missing life with them.  There are times when I am at home on IVs and not feeling well that I have to take more breaks and am not able to do as much.  They know that physical things are limited because I start coughing and get out of breath and have to stop.  With that said, I usually push the limits and do more than I maybe should because I don't want to miss out on anything.

In the book you are writing you talk about getting your tubes tied so you will not have any children of your own. What made you decide to take this step?  
We chose to get my tubes tied because my lung function was not what it used to be.  If I were to get pregnant it would possibly take a toll on my body that I may not be able to bounce back from.  I tried getting pregnant with my ex husband and it didn't take.  If I had gotten pregnant when I was younger it would have been a different story.  We just made the choice to hopefully avoid any problems in the future.  Once I had my bonus kids I was happy.  Of course I have second guessed my decision and thought that I could have done it, which I probably could, but we didn't want to risk it.  We talked about adoption, but decided that we are very happy and content with our 2.

What would your advice be to other CF moms or dads that are about to embark on the journey of being a bonus parent?  
My advice would be to take it slow and integrate the kids slowly or integrate yourself slowly.  It can be a scary adventure but it is very much worth it.  Maybe I am spoiled in the sense that my bonus kids and myself get along great and there is no hate.  It could be like you see in the movies where the step parent hates the children or the children hate the step parent and they make each others lives miserable.  Luckily that is not the case for us and I am so thankful for that.  Kids aren't dumb they know more than we give them credit for.  They know when mom or dad have a new "friend."  Just speak to them with respect to show them how they need to respect you.  Respect is a 2 way road even with kids and parents.  I would say jump in and love the journey.  There will defiantly be bumps in the road and lots of ups and downs but it is worth being able to love a child and for them to have another loving parent.  There is never too many people to love a child if you ask me.

Saturday, April 12, 2014

22 Months

Dear Cake-A-Lake,
I had no idea when you were growing in my belly I would give birth to smaller version of myself. You may look more like your daddy, but your personality is all mine. So often your Nana will look at me and say, "If you ever wonder what you were like as a kid...there you are!" Your obsessive love of snuggles, the way you successfully boss all your friends around, your over dramatic expressions, your willingness to stand up for yourself, your mothering ways with your little cousin, the way you yell when frustrated, the way a good hug fixes all your problems, yes, these are all the little things that you got from me! Love it or hate it you can totally blame it all on me!

Things You Like: You love being outside as much as humanly possible (you got that from me too). You love working in the garden, taking walks (especially now that we are seeing baby ducks along the river), watering the flowers, you just love being outside.

You also love your little cousin with all yoru heart. You love to baby him and cover him with kisses. You spend huge portions of your day talking about him or pretending to be him. I love that you have one another and hope you always stay close.

Things You Like: Naps, especially since i think you gave them up for good. I am less than pleased with this lack of nap situation, but little girl you are always growing u way too quickly and I guess I should have seen this coming too!

Words: Oh my goodness, I sure gave birth to a girl! You talk allllll day long! We went to breakfast the other day, just you and me kid and you talked the entire hour we were out. I mean talked nonstop! I love hearing what you have to say and the thoughts going through your mind.

Tuesday, April 8, 2014

UCSF and Stanford

Any CFers (non transplant) out in the bloggy world go to UCSF or Stanford?? I need your help!! Please e-mail me: InhalingHopeCF@gmail (dot) com

Tuesday, April 1, 2014

We Have Weaned!!

20 months of nursing. 29 months of my body giving of itself to grow and then nourish and comfort my baby. To say I am proud of my nursing journey is an understatement considering my doctors warned me over and over that due to my CF there was a good chance I would not be able to nurse at all. I could lose too much weight, I could get too tired, I could get sick and needs meds deemed unsafe for nursing. And yet, Kay and I made it to 20 whole months!

I am no expert and every kid is different, but I wanted to share how I weaned because it is probably the most bizarre story you have ever heard.

I was slowly weaning over the course of several months since I wanted it to be as easy on Kay as possible. With that being said, by the time we were down to one feeding I was ready. After over 2 years of giving so much of myself to K through pregnancy and nursing I needed my body back. With my health issues I needed time to focus on my own body and Kay was old enough that her body no longer needed mine.

We got down to one feeding just as she woke up. I was her morning coffee. I loved these feedings because I was able to snuggle, doze off, and enjoy a lazy early morning while waiting for the sun to rise. Despite my own enjoyment for these slow lazy wake ups I knew that these feedings were a habit for K and no longer a necessity.

I think she knew it was time to wean, too. I started trying to distract her soon after latching on and it would work some of the time and other times she completely refused to be swayed from her long snuggles and nursing. Then one day she figured out a way to let go of nursing and leave that chapter behind us.

Let me first explain something, K has this obsession with her feet. It is seriously cute (and strange). She makes them talk, do breathing treatments (complete with fake spitting and patting them on the "back"), she makes them do silly things like read books, play with toys, and have conversations. Kids are weird and K is no exception!!

So one day Kay asked if her dedos (toes in Spanish) could nurse. In my sleepy state I agreed and Kay held her feet to my chest, we counted to five, and then she jumped off my lap and went to play. I was left in the rocking chair a little perplexed at what had just happened. My little Kay just nursed her feet and then seemed satisfied. Was this the key to weaning??

Although she ended up nursing a few more times in the next few weeks, the majority of the time she would ask to let her feet nurse and then move on. We weaned (both Kay and her feet) for a few weeks now and although she sometimes asks when she first wakes up and is sleepy she seems perfectly content with our new no-nursing relationship. I miss it at times, but know in my heart that both K and I were ready for the next chapter of our lives which does not include nursing.

You won't find this advice in a book and I am not sure any other kid would be satisfied with nursing their feet, but my little Kay found her own way to say goodbye to nursing and that is more than okay with me!

Friday, March 28, 2014


So sickness came to visit our house once again. It seems to find it's way to us, uninvited, on a regular basis now. It started as it usually does, through my husband. I was finally in a good exercise routine, feeling better from the hospital, and doing well so my heart sunk when he said he felt a scratchy throat coming on. We tried to quarantine him and I took extra naps, went to bed early, upped my supplements, but once my daughter caught it I knew I was the next victim. There is no escaping the wrath of sick baby germs when you wipe their nose, snuggle their germy faces, and get coughed on by their tiny mouths.

The nasty head cold left me coughing so hard and long I was without a voice for longer than the duration of the cold. Just as I started to feel like my cold was going away I started to feel feverish. As the days went on the cold symptoms disappeared, but the fevers, oh the fevers, became uncontrollable, often 103 even after taking Tylenol!! I was left most of the day shaking and sweating in bed. I eventually ended up in urgent care one evening after having excruciating pain in my right flank. Although, I never found out the cause (yet- they are still investigating) of what was going on I was given antibiotics and after being sick for over 2 weeks (the cold and then fevers) I am finally feeling well again. My energy is back, my appetite is back, and I am starting to get back into my "well" routine. I am hoping to stay healthy long enough to work on all the plugging that is clogging up my lungs. I need a break from sickness to work on my CF which so desperately needs attention. Luckily, I am still doing flutter 2x/day, 100-120 minutes of Vest a day, and 20 minutes of percussor so I am hoping so much that it is starting to make a difference. How can it not, right?? Right?

Monday, March 24, 2014

Circus Act

Sometimes doing treatments with kids is like a circus act! My daughter is wildly independent in her play which makes treatment time so much easier than when she was little. She plays around the living room or goes outside (I can easily see her from where I do treatments). However, kids will be kids and there are days that I am pulling my hair out trying to get treatments done.

Today for example during one 30 minute Vest and neb cycle my sweet daughter:

  • Spilled water all down her dress and needed me to dry and change her clothes.
  • Went pee on the potty so I had to wipe, dump pee in big potty, wash hands, and clap and cheer.
  • Fell out of her chair while eating a snack and needed a "mama hug" and kisses.
  • Went poop on the potty and needed me to help her wipe, dump, wash hands, and cheer.
  • Finished her snack and asked for more banana adding a long, "pleeeease" at the end. 
  • Dropped a wooden block in her toddler potty and then cried because she didn't want to touch it because poo poo goes in the potty. 
My thirty minute treatments quickly turned into an hour and a half! At least life is never boring with a toddler in the house!!

Wednesday, March 12, 2014

21 Months

Dear Curly Haired K,
You are becoming so grown up and I love watching you transform right before my eyes. Our days are full of conversation (often the same topic repeated over and over), art, playing in the yard, seeing family, and lots and lots of snuggles!

I am learning a lot about myself through your language development. I need to stop saying the word, "shit". I also must lose things a lot because you love to open drawers and cabinets, look around with a puzzled expression and say, "Hmmmm? Hmmm? Huh? Huh?"

Things You Like: You love narrating life so we get an instant replay of everything we do all the time! For example after I returned from a run I got this little replay,

K, "Mama run, run, run!
Me:"Yes, mama went on her run."
K, "TayTee (Kaylee) home wee wee wee (she says wee wee to indicate she was crying).
Me, "Oh, was Kaylee crying while mama was gone?"
K, "Yesh, Mama back. No mas (no more in Spanish) wee wee.

Or at the hardware store with my dad. He dropped something while we were walking

K, "Uh oh. Papa drop! Mama drop? No, Papa drop. Taytee drop? No Papa drop. No Nana drop. Papa drop. Yes, Papa drop. Uh oh drop Papa! Uh oh Uh oh. Papa drop." (this went on for a very long time)

You also like to retell stories with a little extra drama. Who knew that started so young. After playing outside for a little the neighbors dog came out and poked his nose through the fence to see what you were doing. You said hi to him and carried on your business of digging in the dirt. Later when we went in you told dada,

K: "Dada!! Chucho (dog in Spanish) come! Taytee gasp!!!!!" you dropped your jaw and looked shocked throwing your hands over your gaping mouth. Somehow my memory is that you were rather indifferent to the dog.

Dislike: Your hair keeps getting longer and longer, but you can't tell unless it is wet because as it gets longer it gets curlier and curlier. Those crazy curls match your spunky personality, however, they have a tendency to curl into each other making tangles. And if there is one thing you hate it is getting your hair washed and you really don't like it brushed (with my fingers- I learned you don't use a regular brush on curls the hard way). If it were up to you your hair would be rockin dread locks. Mommy's hair is as straight as can be so I am still trying to figure out how to care for those little curls.

Words: You know *almost* the whole alphabet in Spanish (except you still think w is m) You can't recite the song correctly although you try, but you have letter recognition. It makes shopping a little slower since you have to tell me every single time you see a letter you recognize.

You keep saying new words everyday. Yesterday you said, "itchy" (while scratching your cheek) which was cool since I didn't know you even knew what that word meant. You also recently learned, "Mama get it" which, although cute, is not my favorite sentence since you are usually bossing me around with it!