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!!!

Feelings

I started to post a quick status update on Facebook but decided to jump over here instead.  I just finished with an administrative hearing with the state of Michigan.  We ordered a stroller type wheelchair for Keyan back in April of 2012.  I will not bore you with the details of why we ordered what we did but just know that we spent several months choosing the right one for her and were guided by the experts at Mary Free Bed Rehab hospital.  The State approved the chair but denied the recline option.  Again, I will not go into all the justification for the recline, but just know that it is NECESSARY!!!

You must know first of all that even getting the hearing was a struggle.  The hearing was originally scheduled for the end of November and the day before it was to be held, the state called and cancelled it.  They then rescheduled it for today.  Never mind that Keyan needs the dumb chair and their delays are preventing that.  Secondly, I received an 85 page document yesterday afternoon that the state was submitting into evidence….nice that I had time to deal with and understand that!  Lastly, you need to understand that this feature is a relatively inexpensive feature of the chair.  I can guarantee that the man-hours that went into preparing for this hearing could well have paid for her chair to recline.

The hearing began at nine this morning and I  was instructed that the state would speak first, I could ask questions, I would than be sworn in and could testify.  The lady that spoke on behalf of the state than proceeded to talk for 46 minutes.  It was unbelievable.  At the 46 minute mark, the judge interrupted her and told her that our time was winding down.  This was a shock to me.  I had no idea that the hearing had a time limit.  She wrapped it up, I was sworn in and began to testify fully understanding at this point that the judge needed to get on with his day.  I quickly summarized my belief as to why the recline was needed and than the state got the last word.  I was so frustrated.  I suppose with more legal training I would have thought to ask for an adjournment so that we could complete the hearing fairly but, unfortunately, I have not had the opportunity to go to law school.  Anyway, the judge told us he would issue his decision in writing next week and that was the end of it.

Here is what I know. I know that no parent should have to bear witness to their precious child being reduced to a policy or a bullet point in a document.  It was heartbreaking to have to beg for a simple thing to make Keyan more comfortable.  I know that requesting the hearing and fighting the denial was absolutely the right thing to do but I so wish that I had just figured out a way to pay for the recline option and not be subjected to the humiliating and dehumanizing hearing.  I know that we need the state’s assistance in caring for Keyan and that I will continue to fight to give her the best day.  But I sure did hate listening to someone fit her into a box.  She is so much more than that.  I know that no parent in their right mind wants to order a damn stupid wheelchair for their child, let alone fight like hell to get one.  I know that we are diligent in pursing all sorts of funding avenues to get what we need for Keyan, and it is exhausting.  We are not wasteful, we would love for Keyan not to need recline.  I know that this whole thing is ridiculous.  I challenge that nurse that made this decision to begin with to come out from behind her desk and live my life…no actually, I challenge her to live Keyan’s.  To be told what should be comfortable, to be told what isn’t necessary, to be told that meeting your basic need of happiness is not cost effective.  I challenge her to be as brave as my dear child.  To be as strong and carry around an additional quarter of her own weight on her back if she wants to try and walk.  I challenge her to have the gull to look my daughter in her eyes and tell her she doesn’t deserve to relax when she is exhausted.  I know our government system is overwrought with scams and users.  To the state of Michigan…we are not one of those cases.  See my girl for who she is.  See how she wants to live life to the fullest and than I dare you to deny her that. 

Our Angel

***Warning*** This post contains what some might refer to as “too much information.”  You have been warned!

 

I think it is safe to say that being the parents of five kids is exhausting enough.  Add to that, a child with complex medical needs, and needless to say, there is not much time to do anything besides meeting the needs of our kids.  Compound that by a discouraging diagnosis and prognosis and our life as a couple is absolutely non existent.

I firmly believe, in theory, that date nights, time away from the kids, good communication, and yes, even intimacy and sex are all necessary parts of a successful marriage.  However, that theory was before kids and Keyan.  Date nights are usually while sitting in the ER with Keyan or possibly a quick lunch out, talking is overrated when you are physically and emotionally worn out, and intimacy and sex are about the last thing to get done on the “to-do” list.  I know that it may sound pathetic, but it is our reality, I will not sugar coat it.  It is hard on a marriage, but also in pure honesty, there just isn’t a lot of time to worry about it.  We parent as a team, we make decisions as a team, and we do our best to connect with quick smiles shared over the kids heads.  We stand by each other thru thick and thin and that, in my mind, is more romantic than a few moments in bed.  HOWEVER….Paul may not agree!!!

So, that is the background information that you need to understand my story for tonight.

The boys of the house went to see a movie so we girls got into our jammies early and played games.  We finished the night with a movie.  Choosing a movie for all of them is somewhat difficult because if left totally up to her, Keyan would still choose a preschool aged movie. That is fine when she is watching by herself, but the other girls only have so much tolerance.  So, I picked one that was supposed to be about a puppy and we snuggled in to watch.  As the movie progressed, I knew that it was a little over Keyan’s head but she wasn’t complaining so I just went with it.  At one point in the movie, which by the way, never had a puppy in it; the mom and the dad were snuggling in their bed in the morning.  Keyan looked right at me and said, “Mommy, you and Daddy should do that!  You should snuggle in your bed in the morning time.  Well, not on a morning where there is school but on the days when we don’t go to school.  What day is it today Mommy?”  I told her that it was Saturday and she continued with, “Oh, than Sunday….Sunday there is no school right McKenzy?  Mommy, you should do that with Daddy tomorrow!  You can snuggle in your bed on Sunday morning!” 

I sort of chuckled, but than it struck me how right this beautiful little girl of our was.  I sat back and just stared at her as tears welled up in my eyes.  She had no idea that Paul and I are so overwhelmed and depressed that finding making time for each other has gone off the radar.  But I believe it was a message from our angel.  “Mommy, take care of yourself…take care of Daddy.  You need each other, cling to one another, and find solace in your connection.”  It  was a moment that I can’t describe accurately enough but it spoke to my heart.  Reality says I have no idea when Paul and I will steal a few moments to share anything other than tears, but it will come back on my priority list…thanks to my angel!

Tears

Tears are abundant at our house lately.  I am sure that it is to be expected, however, I don’t particularly like it….neither does Paul.  He has a hard time with tears.  We took all of our kids except for Keyan to get hot chocolate tonight and to talk to them about what we found out about Keyan.  It was tough.  Paul and I practiced what we wanted to say but nothing prepares you for the moment that you tell your children that their sister may die.  We needed to use that word and boy was it hard to get out of my mouth.  I wanted to step all around the word “die”, but in all fairness, knew that was the word and concept they would be most “comfortable” with.  My stomach was churning all day with the anticipation of what was to come.

Abagayle broke out in hysterical tears, McKenzy laughed nervously and tried to crack jokes and change the subject.  Jamahl and Sidney sat and stared off.  They all had a few questions but it was mostly Paul and I doing the talking.  We told them we wanted them to always be able to ask us anything and that we would help them all through whatever may happen.  It was terrible, it was hard, and yet, it felt good because it was the right thing to do.

Jamahl came home and snuggled right up to Keyan for quite awhile.  Sidney cried herself to sleep as I rubbed her hair and told her that it was alright to cry….and as I cried right along with her.  Abagayle is whimpering in her sleep.  My precious children just had a little bit of their innocence stolen away from them tonight and I hate it!  The responsibility weighs heavy on Paul and I as we navigate this with our children, especially because we are aching ourselves. 

Many of you have asked if Keyan understands.  We will not lie to her, we will not give her false information or hope, but Keyan is not developmentally ready to be told she may die because her stomach and intestines don’t work.  Keyan will not be able to fully understand that and it will only cause fear.  We talk about heaven a lot with her because she sometimes is very fixated on what heaven is all about but for now, that is the extent of it.  She has lived this way her entire life.  She is often in pain, often sick, and knows nothing other than tubes, hospitals, nurses, and loving life.  We will not burden her with the weight of this most recent news until she shows us she is ready.

I ask of you all that you please be patient with me and my family.  We are discouraged, we are teary, we are angry, and we are doing the very best we can to figure this all out. It is not easy. Please love on my kids. They are confused and hurting, and yet doing their best to get through their day. They are brave and yet so frightened.  Thanks for your kind words and thoughts, they seem to come at some of our lowest times. 

Results

To really explain the results that we received in Cincinnati last week, I really need to start back at this past spring.  In late April, Keyan started suffering from additional abdominal pain.  It was several times a day and we struggled with getting her relief.  Her body was also putting out greater amounts of drainage from her stomach and the stuff that we were getting out changed from her normal pale yellow to sludgy green.  We tried a lot of things and had several conversations with the doctor in Cincinnati.  In July, the GI doctor in Cincinnati asked us to be seen by her local GI doctor because she really wasn't doing well.  That appointment led to her being admitted here in Grand Rapids for testing.  I agreed to admit her for 24 hours with the understanding that they better be doing something….not just observing her.  To my surprise, they were able to coordinate quite a bit of testing over the next 30 hours or so.  Nothing was showing much (typical for Keyan), until we did an upper GI.  The first problem, was upon viewing the live upper GI, Keyan’s stomach had no peristalsis (contractions).  That is not the way your stomach is supposed to behave.  Upon further investigating, we left there with a diagnosis that made some sense but didn’t quite settle right with us.  Regardless, because there was nothing to do about it, we went home having her stay on her right side as much as possible to help her stomach drain and called Cincinnati.

We had a regular check-up with Cinci in August where they discussed with us that while Grand Rapid’s diagnosis was possible, it was not very probable.  It would be on their list of things to look into, but not one of the first 20!  No surprise to us.  At that point in the appointment, the doctor asked to see what was coming our of her stomach into her Ferrell drainage bag.  AS SOON as he saw it, he looked at us and said, “That is bile, which means there is a GI blockage.  We just need to find it.  We can fix this.”  We were relieved and reminded how important it is that they actually “see” Keyan.  We went home and waited for all of the moons to align (read insurance)  so that we could take her back to figure it all out.  She and I headed back down for her to be admitted the third week of October.

Those four days of testing were absolute hell for Keyan.  The testing that they put her through kept her in a constant state of pain and retching.  It was horrible to watch and I felt horrible for agreeing to putting her through it.  In all reality, I was actually very unprepared for what they were going to do and felt like I was being tricked into consenting…I suppose that is a whole different post though!  All along, my only saving grace was the benefit of these tests if they actually found something.  We left the hospital at 8pm when all of the test were done and she had all of her tubes back in place.  They did their best to convince me to stay the night but Keyan and I both needed to get out of the hospital as soon as we could.  She is not an infant any longer. She knows what is happening.  She looks to me to help her and when I have to hold her down through a terrible procedure, it is confusing to her.  When she screams , “no”,over and over again, and I let things continue, she is scarred.  By the time we left, she would not make eye contact with anyone and she had stopped talking.  I knew we were doing emotional damage to her and I was DONE!

It was very clear on my trip home the next day that she had pneumonia from aspirating all of the stuff they put into her stomach.  It was a horrible feeling to hear every one of those coughing spells and to watch her heart rate keep climbing as she was drowning in secretions.  We got her to her wonderful pediatrician when we got home and with the use of strong antibiotics and high doses of steroids, we were able to work at getting her back to her baseline. 

Ten days after we returned home, I received a call from our nurse in Cincinnati.  She called to get an update and to let us know that they had some preliminary test results to discuss with us.  The doctor requested that we come back down so that we could discuss the findings in person.  I scheduled the appointment and hung up the phone.  It was than that I realized I was shaking and having a hard time breathing.  I knew then that he was not bringing us back down to tell us good news.  The next three weeks passed by with this constant weight of worry hanging over our heads.

Our appointment was last Thursday. The doctor, who always has a large group of people with him, walked in alone.  He sat across from us and stated, “This is a conversation amongst friends.  I am not giving a lecture.  I want you to feel comfortable to ask questions and have emotions.”  I found myself holding my breath with the reality that I was right all along….not good news.

• The test showed that her stomach and intestines are grossly abnormal.  The do not work.  They do not digest, they do not absorb well, they do not do anything.  She has what is called neuropathic dysmotility, otherwise known as chronic pseudo obstruction disorder. Fancy words for the GI system does not work.  It is either that the nerves are not getting the right messages from her brain, or the nerves are not giving the right messages to the muscles.  They have no way to determine which it is, just that it involves the nerves.
• The doctors will no longer view her GI tract as a means of nutrition, simply a means of drainage, which it barely does on it own to begin with.  Right now, we are using a bag to drain her stomach, which is keeping her comfortable enough.  That will not always be the case and the doctors began discussions about other ways to drain, none of which are wonderful.
• The doctors will switch from investigative care to comfort and quality of life care.  There is no cure for this disorder.  We can only manage her symptoms and keep her comfortable. We will have additional fluids to run here at home so that she can remain hydrated, and we will use some pain meds to help her through the rough spells.
• All of this leaves her TPN dependent for the rest of her life. TPN is her IV nutrition and it is what will sustain her life.  TPN comes with many complications like septic infections, organ failure, and the risk of not having IV access to get her what she needs.

None of this was shocking to us.  We have lived through eight years watching her GI system digress.  We have been focused on her quality of life for 2 years now.  However, when the best GI team in the country suddenly agrees with you and tells you there is nothing more that can be done to fix this, you suddenly realize how much hope you truly had been holding on to.  I have lived with the understanding that we may not have Keyan with us for as long as we would like, but to be told that this will only get worse was very hard to hear. 

We will continue to pray for a miracle, but it is time that we as a family face the reality that Keyan will only live as long as her body can endure the TPN.  We have no idea how long that will be but it is time that we speak honestly about it. You need to understand that NEVER in 8 years have we been told there is no hope.  This is the first time.  We may have already known that in our hearts, but hearing it and accepting it are very difficult  We are heart broken, angry, in a fog, thankful for the tubes that are keeping her with us, and yet so frustrated by the reality that those tubes bring us.  We are not afraid to talk about it, but we honestly don’t even know what to say.  We have a lot of work in front of us.  We need to meet with her other doctors to see if this information helps answer questions for them.  We need to help our other kids navigate this and give them a better understanding and language for their questions.  I am sure they are feeling confused by our hushed conversations and tears that come too easily.

Again, thanks so much for caring about our girl.  I have always said that while I would never wish our situation on ANYONE, I would wish what we have learned from Keyan on EVERYONE.  We have learned to take nothing for granted.  To embrace all sorts of “normal” and that one little girl can change your life in an instant.

A fieldtrip to the zoo

May 24, 2012

As the school year came to a close, the girls class spent the day at the local zoo.  For some unknown reason, the fourth grade teachers decided at the last minutes that the fourth graders would also go on a fieldtrip to the zoo despite the fact that the kids had gone in first grade.  Of course, the two trips were scheduled four days apart which I found impossible to work into my schedule.  I needed to go on both trips because of transportation issues so instead of going on two different days, I pulled Jamal out of school and he went along with me to the girls zoo trip.  It actually worked out really well!  We had a lot of fun exploring the zoo with friends and were able to stay a little longer than the class did which left us with a zoo virtually to ourselves.  I took a lot of heat for switching Jamahl’s days, but am so glad that I stuck to my guns and was able to enjoy the zoo with him as well. He is an amazing big brother who loved teaching the first graders his vast wealth of zoology!

It is always amazing to me how the kids respond to the animals at the zoo.  First and foremost, this is not a large zoo.  You can easily walk through the entire thing in a couple of hours.  We have gone to this particular zoo several times and the kids never tire of it.  It is pretty neat that you always see things a little different depending on the weather and the time of year.  The zoo is not particularly handicapped accessible, but we all did our best getting Keyan as close as we could in the hopes that she would be able to see. She was often left to using her other senses and it is always fun to “watch” how her hearing and smell become intensified when she can’t see that well.  Our bodies are SOOO adaptable!  In true accord, her friend Max navigated her though the zoo and was often her eyes for her, describing to her what he saw. 

I love spending time with the kids and their friends.  You can learn so much about your own kids by sitting back and watching how they interact with their peers.  I love to watch the smiles on their faces as they share the excitement of a newly discovered animal with their friend or watch their eyes twinkle as they discuss the exact shade of the pink flamingos.  It is exciting to watch my “shy” Sidney blabbing away with her friends about the bear who we watched take a bath.  Most of all, it is comforting to know that despite being a very tight little sibling group, our girls are absolutely unique individuals with different opinions, moods, ideas, and spirits.  I walked away from the zoo very tired and hot, but grateful for the precious being that I have been given as a mom.