My school prayer

Dear God,

Bless these special kiddos today.  Seventh grade and fourth seems so grown up.  Thank you for a wonderful summer filled with camps, sports, friends, family, and relaxation.  Keep them safe both physically and emotionally.  May they be friends to those around them and may they be surrounded by friends that build them up.  Help them feel secure in who You created them to be and let them feel your arms around them this school year as they continue on the path you have them each on.  I pray that their days are filled with laughter, learning, and a listening heart.  Bless all who may come across their smiling faces.  Thank you God for giving me these five children, and as my tears fall this morning with worry and fear, may you use their time in school to renew my spirit.  May their time at home with us be a safe place to fall and let them be feel our love for each of them.  Amen.

And....we are off and running!!!!!

New Trach!!!!

Besides Keyan needing emergency surgery over the weekend because her central line fell out, (Never a dull moment around here!), I have spent the last two weeks doing not much else besides fighting for the trachs that Keyan needs.  It has been literally hundreds of phone calls, emails, voicemails, letters, and even more tears and vents of frustration.  It comes down to the dollar amount that the insurance company will reimburse the medical equipment company.  It is very complex and confusing because it basically makes no logistic sense.  

After my last blog post, several of you very generously offered to help buy Keyan her trach.  That was never my intent when sharing our dilemma but none the less, it was so comforting to hear from so many people who love our girl and are willing to help her.  The support we get from all of you means so much to us. 

To make a long story short, while we proceeded with ordering the custom trach (which is not the ideal one, but is the one that we can get covered), I had a lot of conversations with the manufacturer of the new trach and even the product developer.  Yesterday, I received a call from them and they told me they were sending the trach that Keyan needs to us as a "sample", with no cost to us!  I could not believe my ears.  This is a small company just working at getting off the ground.  I never expected them to do this.  The woman said, "We do not want this to be a hurdle for you right now.  We know that caring for kids like Keyan is hard enough.  Yes, we are a company that needs to make profits, but we also do not want kids to go with out what they need."  WOW!!!!  What an impact they have made not only on Keyan but on me.  We feel so blessed by their generosity.  They overnighted them and we received them this afternoon.  I seriously felt like it was Christmas when UPS arrived.

We are ultimatly upsizing Keyan from a 3.0 diameter to a 4.0.  That is no easy task though so we started tonight with a 3.5.  It was difficult to get in, but we eventually got it.  She coughed for quite awhile and said that it felt "different...even when I breath." It didn't take long though before she was going on with her night like nothing ever happened.  She has been anxiously awaiting a longer trach because the shorter one is causing so many problems. She was excited to try it out...which is a good thing because her excitement overcame the pain and fears.

The two trachs that this company sent will only buy us time. So for now, I will continue fighting for this crazy piece of plastic that gives Keyan a better quality of life.   They sent the one that she needs, and a smaller back up one.  She will continue to need two of the correct size every month.  But, I will not have to fight watching her continue to suffer.  She will be breathing easier and hopefully no longer bleeding from the irritation of a short trach.  She can go on being her happy little self while I try to plead to the powers that be!  Please continue to pray that the medical equipment company will see the absurdity of paying thousands of dollars for a custom trach when the ones that we want are less than $200.  While it makes no sense....it is the system we are stuck in.  When Keyan's ENT listened to the problems we were having and tried to catch up on all of Keyan's recent medical history, he looked at me and said, "You need a problem that can be answered, and I can give you that!"  It was awesome to feel like he understood the complexities of Keyan and was honestly happy that he could take some of the burden off my shoulders...little did he know that he was creating a battle!  However, I will always go to the ends of the earth to make Keyan's day the best one possible. Today, with a lot of help from the good Lord above,  and some people who genuinely care about kids,we managed to do just that!

Checking her new trach out in the mirror...look at that smile!

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.