Middle School and High School

It's that dreaded time of year....back to school.  The kids all returned to school today after a great summer.  It was a rather uneventful summer but we enjoyed a lot of just being together, playing games, watching movies, swimming, bike riding, and spending time with friends.  

Today Jamahl started ninth grade at the high school.  He has a rigorous academic schedule and even taught himself geometry over the summer to double advance in math this year.  He chose to play water polo over football this fall and has been nothing but busy busy busy!

The girls are off to 6th grade this year at the middle school.  They were excitedly nervous this morning but had a great day.  Middle school is the first time that the girls will not be together at school.  They all have choir together but besides that they are dispersed all over the building.  For the most part, the three girls have the same teachers for ease and convenience.  Keyan will be entering the cognitively impaired classroom this year where she will spend a good portion of her day.  We visited the class last year once or twice a month and she has been SUPER excited to become part of that team. 

Dear God, keep these precious kiddos safe this year.  I know they are on the brink of really soaring in life and I am so excited to support those flights....to celebrate the successes and help pick up the pieces when it may not go as planned.  Surround them with adults who will love them, challenge them, get to know them, and support them through this season of life.  Please bring friends into their lives that will grow with them and be there for them no matter what.  Please help them nurture friendships new and old and may they always be kind to everyone!  May home continue to be a safe haven and give Paul and I unending wisdom.  Bless our children, thanks for loaning them to us to care for and love to pieces! We are beyond honored!  Ready, set....here we go!

State swim meet

Finally an overdue post about Jamahl's state swim meet that was a few weekends ago.  It was a LONG weekend with 10 hour days at the pool but it was a great one.  Because Jamahl does other sports besides swimming, he had a fairly short summer swim season so we didn't know what to expect when it came to the championship weekend.  However, when push came to shove he achieved exactly what we was hoping for.  He cut time in everything he swam, he placed in the top 16 in all five of his individual events placing as high as 7th in his 200 IM, his relay team took two fifth place finishes, and most of all he soaked up a great experience having fun with his friends.  I love the fact that Jamahl can see the big picture, not get too upset about anything and feel good about his accomplishments at the moment instead of getting caught up in the "should haves."  He was dedicated to the pool for the time he had available this summer and it showed that weekend.  We just could not be prouder of this kid!

                                                                     Warming up

 Butterfly

Back Stroke

Breast stroke

 Look at that smile!

 7th place in the 200 IM

 Enjoying his accomplishments

All worn out! 

Busy night

Tonight was a busy busy night for our household.  The girls all had a showcase of music for their school.  Abby had a solo; Abby, McKenzy, and Sidney participated in the record part; and Sidney played the alto xylophone.  They all did SOO good.  I could say a lot about the night, but I can sum it up in one sentence....How is it that my girls are about to finish the 5th grade?  It seems insane to me!

The recorder section...can you pick out our three girls?

Beautiful young ladies

Sidney playing the xylophone....so serious!

Keyan smiled thru the whole thing! She loves music.

At the same time, across the building, Jamahl was being inducted into the National Junior Honors Society.  We are super proud of his accomplishments and were so sorry not to be there for the actual ceremony.  Grammie was there for Jamahl and we got there as soon as we could.

Family photo

Grammie watched Jamahl be inducted into the NJHS at the same time as the concert.

He works so hard at everything he does...its always fun to see this side of him too!

An update from the hospital

If you are Facebook friends with me, you are aware that our family has been hit with the influenza A virus.  Abagalye came home from school last friday feeling yucky, McKenzy succumbed to it Sunday by noon, Sidney woke us up at 3am Monday morning and Keyan spiked a fever at 4:30 that same morning.  Because Keyan has an indwelling central IV line, anytime that she has a fever over 100.4, we have to follow a strict protocol which includes 48 hours of IV antibiotics inpatient at the hospital. It was at the ER that we got the positive influenza test.  We immediately started Keyan, Sidney and McKenzy on antiviral medication and hoped for the best.  It has been a rough week!

At this point, Abagayle is finally up and playing a little bit throughout the day.  McKenzy and Sidney aren't getting far from the couch or their bed but they seem to be done with the high temperatures, and Keyan remains in the hospital.  On Keyan's good days, her body does not have much of a reserve to help fight off an infection.  Therefore, this flu has left her very depleted and her body is having a hard time balancing things like fluids and electrolytes.  So, what we were all hoping would be a 48 hours stay to make sure her central line was protected, has turned out to be much more than that.  

We need to get her fluids balanced and in the right place in her body, we need her kidneys and liver to settle down, we need to get several of her electrolytes back to their normal levels, we need to control her nausea and gagging, and get her more comfortable.  That is our plan for the day.

Paul and Jamahl have stayed feeling healthy and we are so thankful for that.   After I woke up with body aches, fever and chest congestion yesterday, I have started Tamiflu and while I don't feel great, it could be A LOT worse.  I did my best to wash my hands like crazy but when you are dealing with trach secretions and all types of bodily fluids, your body can only fight for so long.  

I think the hardest part about this week has just been our family being separated.  While there was once a time when this was our norm, we have moved on from that time very purposefully.  The kids are older and feel the separation differently then when they were toddlers.  Keyan hates being away from her family and home and Paul and I are missing each other something fierce. We are trying to make decisions on the phone and keep things running at home and it is so hard to do effectively.  Thanks so much for those of you who have been praying, dropped off a meal to the house, and offered your help.  It means so much.  It complicates it so much with the other kids being sick and us not wanting to expose people to this nasty bug.  Continue to pray that Keyan's body can get some rest today and continue to heal and find its balance.  Pray for the rest of the kids that they don't  worry too much about her and deal with being away from mom.  Pray that Paul and I can keep trudging on, making the best decisions for everyone involved.  Thanks so much for supporting us through this journey.

Feeling icky and trying to rest

Art Show

Tonight we spent some time celebrating McKenzy and Keyan who were chosen to have their art work displayed at the Holland Arts Council.  It was a fun night looking at all of the various work and the girls really enjoyed seeing the high school projects.  After the show we continued our celebration with fro-yo!  We missed Jamahl but he was at his last middle school regular season swim meet...boo!

 McKenzy had her Sumie style dragon on display.  She was very proud of her hard work.  She used bamboo brushes and learned several different brush techniques.

 Close up!

 McKenzy and her art teacher Mr. Jackson.

Keyan had her piece entitled "Alien in Underpants" displayed.  Here she is with her adaptive art teacher Ms. Tenbarge.  Everyone laughed and laughed at this piece.  

Close up! She really liked the google eyes!

Our four girls...growing up too fast!

My truth

I got the call today around 2pm.  I was in the middle of a Urology appointment with Keyan.  We had just finished her ultrasound and were waiting for the doctor to come in when I had a chance to listen to the voicemail.  It was our nursing agency.  My heart skipped a beat when the nurse said we would need to start the 8 hours of nursing per night March 1st.  The state is in the middle of our review and they have 15 business days to make a decision.  The state says they are on day 9.  Because we do not have a resolution, our hours revert back to the original plan which is 8 hours in March.  I thought I was gong to vomit as the Urologist walked in and casually asked how everything was going.  I swallowed the stomach acid and replied with a weak voice, "Its going alright."  What else was there to say?

And so it begins....We are still holding on to the hope that the state will reinstate hours at the end of the review period but the reality is that we know that hope is very thin.  For now, we cannot hold on to that.  We need to cope with what is in front of us.  Paul and I have spent a lot of hours over the last month trying to figure out the best use of those hours. We have calculated, pondered, and hashed over the ins and outs of taking over 4 hours of her intensive care.  Nothing is simple with Keyan.  Wether it is a bath, helping in the bathroom, meds, TPN, other IVs, nebulizers, or whatever else she needs, it takes an entire person plus some most of the time.  

My main concern has been coming up with a solution that causes the least amount of damage.  We can not escape this without damage being done.  Will it be damage to Keyan and her health? Will it be damage to our other kids because we are unavailable to them or just constantly at the end of our rope?  Will it be damage to ourselves?  Or will it be damage to our marriage.  We will do our absolute best to minimize the damage but there is no way to avoid the damage altogether.  That is the terrifying truth of this situation.  

Please hear me when I say, I know there are people out there that are dealing with much worse.  I have friends with special needs kids who get no help, or very minimal. I have friends whose kids have earned their angel wings and are soaring around in heaven....I am sure they would trade places with me in a heartbeat for more time caring for their children.  I have only survived the last three months by counting my blessings and trying to stay focused on the positive.  But that is not what this post is about. It is about my truth....my heart, my fear, right now.  It is about the fact that Keyan's disease it progressing.  She is becoming immeasurably more complex and will only continue to do so.  It is heart wrenching to live out.

It isn't about sympathy either.  It is about making you aware.  It is about asking you to take just a fraction of a minute and consider what people around you may be going through.  It is to help those of you who see us day to day or talk to us on a regular basis to understand that we are living a nightmare.  It is to explain why we seem despondent or out of touch.  The fear of making a mistake in Keyan's care, hurting our other kids, our marriage crumbling, or literally loosing our sanity changes us at our core.  It changes us to the point that we feel hollow...if we seem that way, just don't take it personally...please have patience with us and know that we are simply in survival mode. 

I want you to hear that care giver fatigue is a very real thing.  It makes me think things that I can't ever speak aloud.  It weighs me down with guilt every turn I make. It buries me in grief beyond that which I can fight off.  It takes the spark out of my eyes and as I look into Paul's eyes, I see that spark fading too.  Look out for people in your life that may be experiencing this.  Smile at them, give of your time, your talents, your energies. Reach out to them and let them know that they matter.  That you see them.  We often feel invisible.  Please don't lecture, or pretend to know what they are living though....think of how the world would change if we really tried to put ourselves in others shoes.  I'll say it again....everyone has their own crap....please be mindful of what people in your life may be suffering though.

Bowling

This morning Keyan had a bowling tournament with the Special Olympics.  She has been practicing once a week since December and was super excited about the tournament.  We were up early so that she could be bowling by 8:30 in the morning.  It has been a constant debate whether Keyan should bowl using the ramp or not but she is adamant that she wants to do it without the ramp so that is how she did it!  She bowled a 60 her first game which included a strike.  Her second game didn't go as well as she only scored 12 but she gets SOOO tired after one game so that was not unexpected.  She cracked us all up with her competitive spirit.  She was not happy with her run of gutter balls.  It was a great morning despite her frustration at times.  The Special Olympic athletes are such an inspiration with their "can do" attitudes and smiles.  Our other girls all got to miss the day of school to come cheer Keyan on and they did a great job encouraging not only her but several of the other athletes that we have gotten to know.  It was so fun to watch.  We missed Jamahl but he had a test at school that he didn't want to miss so we will have to fill him in tonight.  I want to give Amy Bradley a huge shout out.  Amy is Keyan's school nurse who volunteered her time to go with Keyan to practice every week so that Keyan could get a break from mom!  Thanks Amy....we love having you take care of her!   Enjoy the pictures!

Her cheering sisters!

We love being able to support her in her adventures!

Her bowling partner Mrs. Bradley!  Mrs. Bradley keeps her safe  and helps her maneuver the bowling lanes!

Mommy steals a quick pic between frames.

SOOO excited after her strike.  She is actually this excited as long as she gets at least one pin down.

Daddy trying to give Keyan a pep talk to boost her moral....Paul says she gets her competitive side from me!  What???