Friday Randomness

Happy Friday, welcome to the beginning of your weekend!!

 

Quick trip to the park in this brisk weather

 

The last week has been filled with adventures. Rather then bore you with details, I'll just summarize by saying, in our house there's major teething going on, a runny nose were trying to keep contained to Ava, and we had a minor burn injury this week. It's been a little hectic, and I'm sure most moms can read between the lines and know what I'm trying to say is that there has been a lot of holding and snuggling, and little no productivity around here.

 

Ava at her 1st dentist visit

 

As November is coming to a close, and Thanksgiving came and went, I felt the need to express my thankfulness. So I spent two whole naptimes creating an amazing post. It included my

feelings of gratitude as well as pictures for every person included! However it quickly turned into a 5 page post, and the more people I was including the more likely I was that someone would be forgotten and feelings would be injured. I also realized I was really gushing about my husband, and that's something private. He knows how I feel and I know how I feel, and that's what matters. It humors me when I read people's posts raving about their significant other. I wonder who they are trying to convince?

So with the advice of an older, wiser person, I decided to put that on hold.What a bummer that all my hard work would not be published. I would love to be responsible for the warm fuzzies many individuals would feel when they read my gracious accolades. ( who doesn't like to be recognized for their good deeds?) I feel like there are people in my life who do so much and even though I thank them daily, it almost seems like saying "thanks" is just routine, not a heart felt gesture. It is disheartening that a nice, positive post has to be kept to myself because there are people that will find a way to see the negative and get their feelings hurt. I guess after all my hard work it made me realize how many wonderful people are in my life, and boosted my gratitude.So for all my friends and family out there, I thank you for all that you do! Big or small, all gestures are appreciated!

 

Now for the light hearted, easy breezy stuff...........

 

Sunday we got our 1st live Christmas tree since Violet's birth ( out of caution we stuck to artificial last year) we put away the Thanksgiving stuff and are in full fledged Christmas spirit around here. Christmas tree, manger scene, garland, advent calendar...check.check.check. All we need is our outside lights up and to clean the fireplace out for Santa's arrival and our house is Christmas approved!Santa and his elves are watching little girls behavior, although yesterday Ava informed me she is sick of hearing about Santa already.Oops, problem....( I'm just now learning about this whole Elf on a Shelf deal, maybe an option for next year)

Helping put the angel on the tree

Our finished product

 

For once I have even gotten some Christmas shopping done, and it's not even December 1 yet. This year besides Andy, I am finding Violet is the hardest to buy for. (Reference youngest child dilemma yet again) She is not old enough to tell me what she wants, (like a certain someone who adds to her list every time the Toys R Us magazine arrives) and there is nothing she really "needs". She doesn't need clothes, and has all of Ava's "leftover toys", more then she could possibly ever play with. Her favorite past times includes, throwing things on the floor and them picking them back up, scribbling with pens, crayons, markers, whatever she can get her hands on, and climbing on chairs and tables.

My artist girls, take after Uncle Daaron of course

 

 Hmmm,so what do we do? Sure it'd be wisest to fill up that savings account, but this year she is old enough to see the other kids open presents. Do I go to the dollar store and load up on cheap things just so she has something to open, but put a big chunk in her bank? When Ava was her age I think she got all clothes, and she needed them, but for Vi I am drawing a blank.Please insert ideas for a 14 month old here.....

 

Happy Holidays!!!

 



Oh what a day!!

Oh what a day, this fine Tuesday has been already. Today was an important day for us, so important in fact Andy took a half- day from work so he wouldn't miss out. It's clinic day!!!!

Of course our plans changed when Ava woke up in the middle of the night burning up, with a 101 fever. Even though she acted fine this a.m. We couldn't take her and risk infecting other kids at the Pulmonary clinic. Looks like daddy and Ava time for a bit today!

 

Along with her normal CF clinic check up, Vi was also due for her bi-annual chest x-ray. Very traumatic, in case you've never been lucky enough to witness such a task on a toddler I will spare you specifics. While they say it doesn't hurt ( hurt who? the baby or me?) I believe them, but it still looks like a scary contraption to me! Her last visit was two months ago, and we've been so blessed that she's remained healthy during that time. Her chest x-ray looked great, no infiltrate, nor congestion, just some good looking lungs! Her weight is great, she gained almost 3 lbs since September,which puts her BMI ratio at 61%. All good news!!!

But.....she is having some constipation issues,yuck. Her normal 3-5 stools a day are slowly decreasing, and have more recently been reduced to just once daily,and that one time is after a LOT of work. Poor baby...I hate seeing her red in the face, trying so hard to fill that diaper. I've given prunes, helped her do bicycle kicks and even sat her on the potty ( I took her lead after she pulled her pants down, started undoing her diaper and walking into the bathroom) and nothing.

So after our already exciting x-ray adventure the doc felt her belly and decided we needed to visit radiology yet again today....Oh crap!!!!

By this time it's after 11:00, and after violently crying twice now already this a.m. all my sweet girl wants is to go home and nurse, and snuggle with her mommy. Oh dear child are you in for a surprise! The x-ray confirmed she is very backed up but the good news is there is no obstruction,which is common for CFers. Nothing a bit of Miralax won't fix, hopefully! Free to go at last! A few more tears anytime a nurse talked to her, but we were on our way home. We were rushing to meet the home health nurse, who although was very sweet, did not impress Vi at all. She had had enough today and not so shockingly her smiles have been on hold until further notice.The nurse flew through the exam, went over some paperwork and drew up her shots. While it's heartbreaking to hold your child's arms while they are injected, it's also almost like a sigh of relief. Violet received her 1st dose of Synagis for the year. This vaccinates her against the awful RSV virus that is all too common in the winter.while a cold for most, can be deadly for her. After the nurse left, I tried to feed Vi some lunch, without success. The tears and heavy sighs continued and of course every time she looked down at her band aid the whole process started again.

 So we went up in her room,sat in the rocking chair. She nursed, we rocked, I hummed, she calmed down, and eventually fell asleep. Success! Finally at peace!

CCKT

 Shortly after Violet's diagnosis, as our acceptance period began, I was contacted by another mother of a CF child.  The social worker at our center had suggested I contact another family, and I kept telling her I would..one day. I knew it could be beneficial, but I guess I was thinking I would wake up and this would all be a bad dream. So the longer I avoided her and all things CF, the better....

 There are about 150 people in the Toledo area living with CF and out of all the kids our pediatricians treat, only 2 other kids have CF.It was actually our pediatrician, who had a lady call me, before I got back to the social worker at the clinic with an answer. Ready or not, I was glad she called.She has an older child with CF and was able to give me some advice and made it all seem a lot less scary. After talking with her a few times I started paying attention to the flyers in the clinic for fundraisers and benefits and such. I figured the doctors and nurses can give me facts til their blue in the face, but only another mother can truely understand and know what it's like to raise a child with this disease. Since last Winter I have met a handful of other wonderful parents, and although we are unable to ever hang out as families, I communicate with the other moms quite often.

 Over the weekend, Andy and I, along with my in-laws and my mom attended a wonderful event for another local CF family. (Ava, Violet and Kylie stayed home with Papa)

Carson's Crew and Kennedy Too is the name of the team supporting a Toledo area family with two kids living with Cystic Fribrosis. Carson, is 5, was born prematurely, and required a long stay in the NICU. Kennedy is 3, and (just like Violet) was diagnosed through her newborn screen at 10 days old. They both are healthy now,but require enzymes to digest food, and do breathing treatments with different respiratory meds like Violet. However, since they are older, they wear a vibrating vest during the nebulizer treatments to break up any mucous, the same effect as when we pound Violet with her " bonker".

 Said "Bonker"

Demonstrating how to use it on herself

Notice that her cute little shirt says "Ellissa"

 



On Saturday we drove out to Gibsonburg,where CCKT held their 4th annual reverse raffle. They welcomed over 400 people and after serving a delicious chicken dinner had a live auction, a few tables of silent acutions,as well as numerous raffles going on.There were really great items up for bid, that sparked a lot of interest,and they were able to really kick butt! Just for this event alone, they raised over $50,000, all of which goes right to the CF Foundation for further research for our darling kiddos! This is just one of the many events CCKT holds every year, but only the 2nd event of theirs we have attended. It is very inspirational to see so many friends and family members of Carson and Kennedy work together to put on such a great event and we are so, so, so greatful they raised so much money. Having fundraisers, benefits and especially the annual Great Strides Walk in cities across the USA, helps individuals raise money that is donated directly to the CF Foundation. The CFF does not receive any government funding, so it relies on donations from generous people all over the country.Without such events, there would be no more research, no drug trials and no steps closer to finding the cure for Cystic Fibrosis.

*If you would like to be kept up to date on local events you can LIKE our local chapter,
the Metro Detroit Chapter of CFF on facebook or click on the link below
http://www.cff.org/chapters/detroit/

 Smiley girl

Hiding up on Kylie's bed

 

Sisterly love, as always

The lonely germ debate



Fall is definitely here folks! The chilly mornings, the red and brown leaves falling, the Thanksgiving and Christmas decorations popping up in every store! However, along with the fun things come the sniffling, coughing and the dreaded flu season. Booooo!!

In the spring and summer when the sun is out and it's nice and warm, I'll admit we take Violet places. Not like sitting in a germ infested cart at the grocery store or to the crowded mall, but we've gone to restaurants and such, taken "risks" if you will. In the summer people tend to be healthier and there's less chance someone will be coughing on her, but at the end of the day it's all about maintaining our own comfort level. This summer was great! Violet got to go swimming, and play with all of her cousins (Ahem, all 5 boys by the way.some girl cousins would be great WinkWink) We went to the lake, had cook outs and hung out with friends and enjoyed being active as a family.

Then the fall came and the runny noses started ( not us yet, but man have I seen them in public) and so Violet's "hibernation" begins. We rarely do things as a family, meaning all 5 of us. That's okay though! It has to be, it's our reality, our normal for these first few years. As sad, confusing and hard as it may be sometimes, it's what we feel is best to keep our baby away from all those scary germs.



Of course with the holidays also comes what I'll refer to as the "Great Germ Debate" Andy and I both have families on the larger side ( me with 3 siblings and him with 2) So holidays are a big deal. Lots of food, drinks, gifts, extended families and with them come their germs.



Olczak-Davis-Ash cousins last Christmas, minus Violet

Kylie, Landon, Linden, Hadley, Ava and Deven

 



Last year wasn't so bad...(Violet was only 2 months old)On Thanksgiving we took her to my parents' with us because there were only going to be adults there and not our whole family, in fact less then 10 people. She slept in her car seat the whole 2 hours or so we were there so no harm. Then Andy took Ava and Kylie to his parents and I came home with Vi. ( there were a few little kids there, so the germ risk increases) Christmas we were fortunate to have a great babysitter who watched Vi while we went to my parents for a few hours. Andy's family celebrates the day after Christmas, so my mom kept Violet and the 4 of us went. On a side note that night was cut short as Andy got called out to work and right when he returned Ava jumped off a chair and we ended up in the ER with her.
The bad news was we didn't get to enjoy having all three kids with us, the good news was we survived the Holidays!! Oh and Ava's head was fine, no stitched required!

Now that Violet is over a year old, and walking and talking, the Holidays will so much more fun! Of course with any debatable situation there are pros and cons to her being older...

PROS: She's walking, so it's less likely people will try to hold her, she's very stranger aware and not accepting of unfamiliar faces, and she will enjoy opening presents and seeing all the decorations, that is a for sure!

CONS: She's walking, meaning she is touching A LOT of things as she passes, she's a beggar, and seems to not have qualms about approaching her aunts, uncles, sisters etc who have food that she wants, and also she's old enough now that she cries when Ava and Kylie go somewhere without her! Even though she is so young, she does have feelings too :(



I have read many a debate on message boards, other blogs etc from other CF parents about whether or not to take their kids(s) to family functions and such. I have to say it seems equally divided. Many are on the precautionary side of the fence, avoiding germs at all costs, even if it means total isolation. Others throw caution to the wind, and say they'd rather their kid enjoy life, and sickness is inevitable.

I'd like to find a happy medium. I would like to start exposing her to a little more, and letting her live her life to the fullest, with a list of rules of course. I have no problem leaving if someone has a cough, sniffle, even sneezes one time! Fortunately most of our family members have been pretty complaint with our wishes of not coming to functions if they are ill. I'm sure there are a few people who think I'm nuts, because they don't realize  just a cold to them could be 2 weeks in the hospital for our baby. To be honest I don't care if people think I'm over protective. This is our child, and while she is this young and delicate i will always be her biggest advocate. At the same time, I have to admit, being so precautious does come with the price of missing out on a lot, and losing touch with some people. It sometimes pangs me to think about how often (or not often rather) I get to hang out with friends and their kids, because someone is sick or they're going somewhere off limits to Violet. Next week turns to a few weeks later, then a month, then before you know it, it's been 6 months without seeing each other. This is probably the hardest part..feeling like your out of touch with friends and family. Feeling like we aren't connected like we used to be, but luckily we live in a world with great technology that allows us to keep up with people around the world with things like Facebook, and blogs and Picasa and such.
And in a few years (2years fingers crossed, 5 at the max) when Violet is on Kalydeco and all is great, we look forward to reconnecting and adjusting our "normal" once again!!

* I know some of you have dealt with similar situations with sick kids, or even just taking new babies places. I'd love to hear your thoughts and opinions!!

A lesson on CF

Our beautiful girl

 

As we are becoming more comfortable with Violet's CF diagnosis, it has been easier telling people about the disease and how it affects her.It has also become apparent how little most people know about it. I do not look down on anyone who has no idea what CF is, or even those who have the wrong info and I don't even consider it a bad thing. When we first found out we were dumbfounded, because like the average person we didn't know much, other then it is a chronic, deadly disease.

I wasn't even shocked when I told my family doctor and she admitted she knew nothing other then its a disease that affects the respiratory and GI systems. My OBGYN had even less info, asking if one of us ( me or Andy) had it to pass it to her. Why would she know anything, it is not her specialty. No harm no foul.

If someone told me their child was diagnosed with Turner Syndrome, or Huntington's Disease, I would have to admit I only have limited knowledge on the disorders (thanks to nursing school) They are even less common then CF, and since I know no one personally with either, it doesn't concern me. (Which is really sad to say) Recently I have taken an interest in learning more about genetic disorders. Now I can't say I've spent countless hours with my head in a book, but when I come across an article, or a blog or anything about one of the disorders it grabs my attention. If someone told you they or their child had Down Syndrome or Sickle Cell, you would probably know someone already with IT and/or know quite a bit about the disorder. I have to wonder why that is??

I got to thinking and (did what I was warned back on Day 1 not to do), I googled Cystic Fibrosis. A lot came up, and not all the info was consistent. Luckily there are good websites with reliable information ( as I've shared in the past) but I just thought I'd school you for a second. It's easy to pass on links to websites and such, but I feel like when the info is right in front of you, your more likely to peruse it. So here are some basics, not too much at once. I know nobody likes an info overload, so I'll just limit it to a few topics....

 

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/

(my official works cited, as to not be accused of any plagiarism)

Cystic fibrosis

Last reviewed: May 16, 2012.

Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder.

 

Causes, incidence, and risk factors

Cystic fibrosis (CF) is caused by a defective gene which causes the body to produce abnormally thick and sticky fluid, called mucus. This mucus builds up in the breathing passages of the lungs and in the pancreas, the organ that helps to break down and absorb food.
This collection of sticky mucus results in life-threatening lung infections and serious digestion problems. The disease may also affect the sweat glands and a man's reproductive system.
Millions of Americans carry the defective CF gene, but do not have any symptoms. That's because a person with CF must inherit two defective CF genes -- one from each parent. An estimated 1 in 29 Caucasian Americans have the CF gene. The disease is the most common, deadly, inherited disorder affecting Caucasians in the United States. It's more common among those of Northern or Central European descent.
Most children with CF are diagnosed by age 2. A small number, however, are not diagnosed until age 18 or older. These patients usually have a milder form of the disease.

Symptoms

Symptoms in newborns may include:

• Delayed growth
• Failure to gain weight normally during childhood
• No bowel movements in first 24 to 48 hours of life
• Salty-tasting skin

Symptoms related to bowel function may include:

• Belly pain from severe constipation
• Increased gas, bloating, or a belly that appears swollen (distended)
• Nausea and loss of appetite
• Stools that are pale or clay colored, foul smelling, have mucus, or that float
• Weight loss

Symptoms related to the lungs and sinuses may include:

• Coughing or increased mucus in the sinuses or lungs
• Fatigue
• Nasal congestion caused by nasal polyps
• Recurrent episodes of pneumonia. Symptoms in someone with cystic fibrosis include:
  • Fever
  • Increased coughing
  • Increased shortness of breath
  • Loss of appetite
  • More sputum
  
  
• Sinus pain or pressure caused by infection or polyps

Symptoms that may be noticed later in life:

• Infertility (in men)
• Repeated inflammation of the pancreas (pancreatitis)
• Respiratory symptoms

Luckily Violet has not yet experienced a lot of these symptoms....Hers are mostly the GI associated problems, so far. ( knock on wood) She definitely has the salty tasting skin, and poops quite often, along with a big belly and a ravenous appetite, but it wasn't always like that. She was born weighing a whole pound less then Ava did, and lost 8 ounces before we even left the hospital. At a month old she hadn't even gained a whole pound yet. She is starting to put on weight more steadily now at 13 months old and I'm looking forward to her next clinic visit to see how she's ranked for her height and weight now. ( Her head has always been in the 98th percentile )

Always wakes up a happy girl

 

Always hungry, even eating while in the Moby wrap



Our cute creatures

My goal for Halloween was to get a decent picture of the girls in their costumes. Preferably a pic with the two of them together, both looking, and not crying.....

 

 

 Ava ( she wanted to be called Rosa the kitty)

at her first Halloween party

 

 Trick or treating at the party

 Being friendly with the ghost

 

So the picture together, without crying...that didn't happen!

The day is still young, so I'll just keep trying!

Violet the duck

 (obviously NOT a happy duck at the moment)

 Happy once she saw other kids and got a sucker

 

 Post trick or treating.....

 

" Rosa" walked around for over an hour, I was shocked!

 The girls' jack-o-lanterns

One happy kid... 

Two happy kids...

Just not together!!

 

The next morning....

 They were actually more interested in their new crayons then the candy!!

 They colored their Halloween book for a while

And then...

Violet remembered they got candy, and started looking!

 

 They know the rules...no candy til you eat a good meal

 

So Ava figured the faster Violet ate the sooner they'd get candy!

 

 

I've never seen Ava eat so quickly!

 

Hope everyone had a fun and safe Halloween:)