The current fight

$194.25....This is what stands between Keyan getting the new trach that she needs right away and waiting 2-3 weeks for one to be made.  $5.75 shy of $200...means my daughter can't breath as efficiently as possible for another 2-3 weeks.  $194.25...what is keeping me awake at night and dominating my thoughts during the day.  

Let me explain.  Keyan has outgrown her current trach.  We saw the ENT at the end of March to address it and he measured her as needing a trach that is 15mm longer than the one she currently wears.  He than explained that he was going to try and order one from a company that makes that size  as a standard size but that it was a newer company on the market so he may not be able to get it.  If not, he would have to order one from the company that we have used for the last nine years, but they would have to custom make it.  "Custom made" were words I dreaded hearing.  We have been down this road before and it was horrible.  Keyan needs two new trachs each month to keep the risk of infection down.  That is the bare minimum.  Because we now have to have a custom trach made instead of a stock trach, the price of that trach skyrockets, and her insurance will only cover 1 trach every 6 months!!!  That is completely unacceptable.  Oh, don't worry...we will fight it, we will have doctors write letters of medical necessity, and we will do everything in our power to get two a month but we will have to do this EVERY month and will still not have any guarantee that we can get Keyan what she needs.  

So, we began the process right away and we went after the trach from the new company.  Finally, eleven days later, I was able to get some answers as to where the process stood.  Our medical equipment company informed me that "they had done everything they could" and were not going to be able to get the trach that the doctor had ordered, so they needed to get the information to custom order from the original company.  I immediately asked a lot of questions, talked to several people and eventually had to give in to the fact that I was at a dead end with this company.  Fine...I will track down this new company and go from there.  I did just that and discovered that they have dealt with another medical equipment company here in Michigan.  So, I called that company to see if they could order the trachs for us...and despite three phone calls, I have yet to get an answer.  Meanwhile, my daughter is waiting and needing a longer trach.

This morning after some other calls, I called the manufacturer of this new trach and actually got to talk to the product developer.  The purpose of my call was to ask how much the trach would be if I private paid.  That is where the $194.25 comes in.  That is how much this little piece of PVU costs for me to buy.  This piece of life saving "plastic", this artificial airway that allows Keyan to breath easier and clear her secretions.  Do you have any idea how maddening it is that this trach sits on a shelf two states away waiting to be overnight shipped and I can't get it?  Instead, the process that we have to follow is that we have to order one to be custom made and wait 2-3 more weeks to get it.  In the interim, Keyan is not only more fatigued, but she is so frustrated.  She doesn't have the freedom of movement that she should have because if she moves to much, her trach pops out.  When she talks, she often holds the trach so that it stays in.  She is so frustrated to have to keep dealing with a trach that keeps coming out.  It doesn't feel good in her body and it isn't doing its job.  

Not only that, but the product developer and I talked and he was telling me that one of the main things they were going after in developing this new trach was to eliminate the cancer causing agent BEHP out of their products....great!!!  I know that having all of these medical devices comes with a lots of unknown risks, but I hate having it confirmed. In the end, what I have learned is that there is a trach that is not only the perfect size, but also safer for her...and we are trying to climb mountains to get it.  Does that even make sense? UGH!!!

I am not giving up, you all know me too well to even think that.  I am also not writing this to gather sympathy.  I am simply sharing this to make people aware of the insanity of it all.  You have heard me say before that Keyan takes a whole person to manage her and keep giving her the best day that she can have every day.  Between appointments, prescriptions, insurances, supplies with three different companies, nursing staff, and fighting the constant fires that are always burning, there is always too long of a to-do list.  This is just one example of the hurdles that are in front of us.  Not only is it exhausting, maddening, and so frustrating, but is breaks my heart to watch Keyan struggle with a substandard piece of equipment when there is a solution.  Anyhow, I am off to keep climbing...in between giving these kiddos a great spring break day!  Please join me in praying for a rapid solution!!!

We sure do love this girl, and no matter how exhausted, we will keep fighting!!

The Annual Hogan Family Christmas

I know I promised a Chicago post next but I had to sneak this one in!

 

We had a great day with the entire Hogan family here yesterday for the annual "Hogan Family Christmas."  We had great food, yummy desserts, and so much fun just being together.  The night before, as I was tucking Keyan into bed, she asked me why we didn't ever take pictures of the whole family while they were here every year. In my head, I had a lot of reasons....we are always too busy, there isn't a very nice spot for a photo, ect. However, I knew ultimately, she was right. Pictures are about capturing memories, not about how we all look, or the back drop for the photo. So, I set the timer on my camera and got to work.  We all gathered in our out -of-date basement, with the yucky lighting, surrounded by flying Legos and the clutter of opened gifts and here is the final outcome. It may not be professional but I am so glad we took the time to do it. We had a great day together...why not capture it? Our angel spoke again!  I am so glad I took the time out of my busyness to listen to her!

 

And of course…when the kids outnumber the adults…there must be a goofy one!

Nine years ago…

As usual, the month of November was a flurry of activity around our house.  Everyone in this family celebrated their birthday in November except me, so it is a BUSY month.  With it safely behind me, I think I can find a few minutes to update the blog with birthday posts! 

Every once in a while, I have to look at these comparison pictures.  They are such poignant reminders of how far these precious girls have come.  Nine years ago, we were scared out of our mind, not knowing what the outcome would be for our girls…the doctors had painted a very bleak picture for us in the weeks before they were born.  We knew nothing of this medically fragile world, we were young, naïve, and so fearful….look at them now!

McKenzy Faith 2lbs 5oz. 13 inches long

 

Keyan Elizabeth 1lb 5oz. 10 inches long

 

Sidney Ann 2lbs 3oz 13 inches long

 

Abagayle Grace 2lbs 2oz. 14 inches long

UNBELIEVABLE!!!  Even for me, it never ceases to amaze me!  What these first pictures don’t show is the actual lack of photos that we have.  It doesn't show the hours spent staring into isolets, willing them to keep on. It doesn't show the tears shed at home while separated from our babies, or the late night phone calls to come back to the hospital because something was gravely wrong. The beginning was so scary that we didn’t photograph much of it.  They took turns being so sick on and off that there were periods of time when we couldn’t look at or touch them unless they absolutely needed care.  We weren’t focused on capturing the moments, we were focused on continuing them. It was a minute by minute roller coaster that on one hand I will never forget but in actuality, I remember so very little.  All the odds were against these little girls but one by one, and day by day, they struggled against those odds and here we are.  Some of them are still beating the odds every day in various ways but boy, what a miraculous story they hold! 
***I promise to blog about Chicago next!!!

Halloween

Despite wet weather, our Halloween was a great night.  We decided to host a party again this year since the weather is so unpredictable and the kids have all been feeling a little under the weather.  We keep it “simple” by inviting our friends the Heerma’s (affectionately known as Keyan’s friend Max and his family), my brother, sister-in-law, nieces, Jamahl had a friend, and than the 9 of us!  Simple is obviously relative!  It is a fun group and works out just great.  Before we get to the party though, I must fill you in on the adventure of the girls costumes.

This year, the girls really struggled to decide what to dress up as.  Some of them wanted to do a group costume, but they could never come up with an idea that they all agreed on.  At the same time, I didn’t really want to just walk into the costume store and have them just pick.  So, one Friday night, the girls and I left the boys home and we headed to one of our local consignment stores.  This particular one is HUGE!  We girls had so much fun!  For three hours they ran around the store grabbing items that they could use to dress up in.  They tried outfits on, changed their minds, started the whole process over, and all finally decided.  The interesting thing about the whole night was that my girls don’t typically get to shop like this.  They still like to dress like each other so that limits where we shop and what we buy.  Plus, just due to the nature of our life, I usually do most of their shopping online.  If I go to a store with the girls, they inevitably want the really cute, fashionable things that are just too expensive for our budget.  If I buy it myself, they always like what I buy partly because they do not know what they are missing.  Shopping for “costumes” was so much fun for them because they could pick most anything in the store and I could say “yes.”  Besides, what girl can resist an entire room full of shoes!  We had a great time putting their outfits together and even better yet, they went to school today in last nights “costumes”, repurposed as regular clothes!  How fun! So, without further ado, her is what they came up with!

     

Sidney picked this fancy dress out right away and decided that she would be a winter bridesmaid.  She loves dresses and fancy shoes and we just don’t have many of either one so this was perfect for her.  She was beautiful!

  

Keyan too fell in love with this shirt and so the other girls helped her decide to be a Hawaiian surfer girl.  She loved clopping around in the light up flip flops that she found and her dark hair made this costume the perfect choice for her.

  

McKenzy was drawn to the funky clothing and had the most fun choosing all the different layers and accessories of her DJ costume.  She was slightly distraught because the hat covered her new bangs up that she got cut earlier this week, but in the end, all was well….what a little personality on this one!

 

Abagayle had the hardest time choosing a costume because she just couldn’t make up her mind.  She ended up settling on this darling cheetah.  You have heard me say it before, but she is our very fashion conscious girl.  She loves putting outfits together and loves very random things. So, of course it would be her that needed the face paint and the fancy eye tattoos! She looked so cute and was very happy with her final choice.

 

No surprise to anyone…Jamahl was Tom Brady with the New England Patriots this year.  Did you know that when Tom Brady was young he dressed up as the quarterback for the New England Patriots???  Who knows what Jamahl’s future will hold but we think he makes an incredibly handsome football player.  The other picture is of him doing some last minute homework before the party. He is such a responsible kid!

The women at our party know how to have fun!  Firefighter Emily, I was a cowgirl, my hippie mom, and my hillbilly sister.  What a great group!  I should have gotten a picture of the men since NONE of them dressed up!!!  Emily says they were all nudists on strike, I say they are party poopers!

Most of our group….what a party we had!

 

Our nieces…Lucy and Aubrey.  I love these two “littles”…they add so much to our family!

We had tacos for dinner with cupcakes and monster ice cream sandwiches for dessert.  We made glow in the dark monster nights, played glow in the dark ring toss, ghost bucket bonanza, had a mummy relay, and trick-or-treated through the house.  The kids all had a ton of fun and ended the night with a ton of candy! Nothing better that that!  The best part?  My kiddos were so worn out from the excitement, that they were all in bed by 9pm!  Not too shabby!

 

  

Poor Dad was completely freaked out by my hillbilly sister-in-law.   Truth be told, none of us could look at her without cracking up.  She was in full character and we had such a blast with it!

October has flown by….and now onto BIRTHDAYS!!!! 

Back to school

It is so hard to believe that the school year has begun yet again.  Our last few weeks of summer have been full of walking through the middle school schedule, open houses, gathering supplies, finding shoes to wear that are not flip flops, and filling out forms… all in preparation for today.  It has been busy, but has helped us all begin the process of getting back to school. 

Jamahl entered 6th grade today which in our district is middle school.  Do you remember starting middle school?  I sure do!  I remember being a nervous wreck worrying about everything (surprising, I know).  Lockers, changing classes, different teachers, new kids…you know what I mean.  Jamahl on the other hand was nothing but excited about today.  He has been ready for this challenge for awhile so it has been so much fun watching his anticipation as it drew closer and closer.  When I picked him up this afternoon, he jumped in the car and with a smile on his face, said, “I have so many things to tell you!”  He proceeded to share so many positive things about his day.  It made me happy to see him happy! From meeting new people, to a teacher who loves the New England Patriots, his day was great.  As a parent…who could ask for more?  I was never more grateful to be able to pick him up and catch that initial excitement.  It was awesome!

 

The girls started third grade today and they too had a great day.  I have been in contact with the teacher since last year so I didn’t have near the concerns that I have had in the past.  Keyan’s one-on-one nurse has been with her since first grade so that takes a lot of the worry out of the picture as well.  We are so thankful for a nurse who not only takes great care of Keyan but also looks out for all four of the girls.  We are really lucky to have her.  I stayed in the classroom for the first hour or so and fought back tears as the teacher talked to them not wanting them to worry about anything!  She seems to be so caring and the girls have already commented that she is always smiling.  I checked in with the girls a couple more times throughout the day while I was volunteering in the lunch room and every time I looked in they were smiling and engaged.  Once again, that made me smile!

Third grade VIEW SLIDE SHOW DOWNLOAD ALL

I know it sounds like such a cliche , but it never ceases to amaze me how time speeds by.  The conversations that we can have now with our kids and the ability to share so much of their life is such a joy.   It is not an unknown fact that I really do not like sending my kids to school.  I miss them, I do not like the busy schedule, I have a hard time with other people not treating them right, and I do not like the demands that school takes from our family life.  For today however, I am grateful to live in a country where school is provided, where my girls can go to school right along side the boys, where I am welcome to come and help out, where they are challenged to be better people, and for a few minutes in the day to go grocery shopping without five kids!!!  Here is to a great school year filled with new adventures.

2nd grade talent show

Today was the annual 2nd grade talent show at school.  The girls were super excited about showing off their talents.  It has been quite the project for them.  They have been busy choreographing, figuring out wardrobes (whose closet is better for matching outfits???), downloading music, and practicing.  They were up early with excitement and anticipation of the big day.

 

McKenzy and her friends choreographed their own dance!

Sidney showed off her cart-wheeling talent!

Keyan playing “Twinkle Twinkle Little Star”

 

Abby and her friend sang along with Taylor Swift!

 

I also took some still shots to commemorate the big event! You can click on the link to see them at your own speed!

Tons of Talent! VIEW SLIDE SHOW DOWNLOAD ALL

Ok, some of you may want to stop reading here.  I am going to step on my soap box for a minute so….you have been warned!

One of the down sides to being such an open book type of person is that you also open yourself up for people to share their personal opinions with you.  Most of the time, I can appreciate what people have to say and move on and I NEVER tire of answering questions about the girls or Keyan,  but there are a few instances when I just get fed up with people thinking they know more about my children than I do.  From the moment we found out we would be having quadruplet daughters, people have asked us about school.  For whatever reason, this is a very opinionated topic and we are well versed in talking about the fact that we keep the girls together in the same classroom and sharing our many reasons for that.  However, lately, people have gone from wondering to being down right rude. 

It struck me today as I watched my four very talented daughters, all doing different talents, with all different friends, that people absolutely do not know what they are talking about.  Everyone from numerous people at the school, complete strangers, people who have never met my girls, to even friends, assume that I am being head strong or maybe that I just haven’t thought it all out.  For some reason, it really bothers people that we keep all of the girls in the same classroom at school.  I am hear to declare that unless you are raising MY four quadruplets, you have no right to judge our decision.  I have researched this topic extensively, but even if I hadn’t, living with these girls and their unique connection makes it an easy decision.  If you need proof, look again at the videos and photos from todays show.  Look at their smiling faces, look at their creativity, look at their confidence, and look at their individuality.  Then, respect the fact that we are making the very best, informed decisions that we can make. Period.  

A family field trip

We have driven past Fair Oaks farm in Fair Oaks, Indiana several times over the years and Paul and I have always said that we wanted to bring the kids to visit this dairy farm.  A couple of weeks ago, an opportunity presented itself to go, and although the decision ruffled the feathers of some people at the school, we decided to pack up the van and head south for a day at the farm. 

Fortunately, I had called the farm the week before to gather information about our visit and the lady I spoke with told me that they had 300 school kids scheduled to tour the farm the morning that we were planning our visit. So, we had a leisurely breakfast at home and arrived at the farm right after lunch.  We had the farm virtually to ourselves. It was great!  We toured the exhibits, took a bus tour of the barns, saw the milking carousel where 72 cows ride around while being milked (which is worth the trip in and of itself),  played in the hands-on rooms, saw a baby calf being born, drank some very yummy chocolate milk and shared the best grilled cheese sandwich!   We bounced on the giant pillow, checked on our baby calf, bounced some more, and ended the day with ice cream.  Oh, and we learned some amazing things while having all of this fun too.

The kids favorite fact from the farm was that Fair Oaks turns the cow poop into electricity!  They are totally off the grid as far as power.  Their cows create enough electricity to power 750 homes.  I was very impressed with their commitment to reusing and being self sustaining.  My thought though was if they can power 750 homes, how many cows would I have to have in my backyard to power just our home????  I don’t think my neighbors would appreciate my power source though.  It did give us a lot to talk and laugh about as a family.

My favorite part of the farm was watching the calf be born. The baby was too big for the mom to deliver by herself and so a farm technician had to help her by pulling the baby out. By the time the calf came into the world, it was not breathing and the mom was not at all interested in helping stimulate the baby.  The technician did what she could and she gave us a thumbs up but I could tell that the baby was still not breathing. We all sat holding our breath and a tear slipped down my cheek.  Finally, McKenzy broke the silence when she screamed out that she could finally see the baby breathing.  The calf was still not moving much though so the technician opened up the gate between the two mother cows and the other mom, who had given birth about 40 minutes prior, went over to the abandoned baby and started cleaning it up and stimulating it.  It was really neat to see her take over.  However, her own baby wasn’t pleased that his mom had left him so he worked and worked to get up onto his wobbly legs to get over to her.  It was so amazing to see the bond between mother and baby.  By the time we did the final check on our calf before leaving the farm, he was standing up and doing fine!  What a relief!!!  Leave it to our family to catch a drama filled birth!

On the way home, once the kids were all kicked back watching a movie in the van, Paul and I looked at each other and talked about how great a day it was.  It was busy, tiring, and at times chaotic, but so worth capturing the memories together. That is what life is about for us.  Living in the moment and enjoying our time together as a family.  It was a great day…no matter what the school teacher had to say about it!!!