Triathlon…Who would have thought?

Today was an exciting day in our household.  Jamahl and Sidney did their first triathlon.  It seemed like a crazy idea, but it was super fun!  Jamahl has been interested in doing in for a few months now so when I was registering him, I asked Sidney if she wanted to give it a try and she was ALL over that idea!  McKenzy and Abby were very quick to say that they would just watch and God bless Keyan, she would have totally done it if her little body would allow her to.  Anyways, early this morning, Paul took the two athletes and headed out to rack their bikes and get their transition areas all set!  The rest of us followed in short time to get good viewing areas. 

Sidney had to swim 25 yards, than bike .5 miles and finish by running .25 miles.  Jamahl’s age group swam 50 yards, biked a mile and ran a half mile.  That doesn’t sound too bad until you are doing it all one right after the other!  Sidney’s age group went first and she was just finishing when Jamahl started his swim.  Paul, my parents, and I all got quite a work-out ourselves running from one event to the other, keeping track of the other girls and running thru the camp pushing Keyan in her wheelchair…all while cheering the two kids on!  It was so much fun!

The course got a little confusing and was somewhat overwhelming to Sidney at one point so when she started to run, she looked straight ahead, saw this very long path ahead of her, looked to her right and decided that she would just duck under a few course markers and create her own short cut. It was so cute!  She later told Poppie that her run was kinda’ short, and she could have gone a lot further!  Out of the mouths of babes!  Jamahl of course got lots of comments on his flip turn in the pool and enjoyed every minute of all three events.  He was such a great big brother…helping Sidney stretch out, letting her tag along with he and his friends after the race, and telling her what a great job she did.

triathlon VIEW SLIDE SHOW DOWNLOAD ALL

**Don’t forget to view the entire slideshow by clicking above

The camp ground where the triathlon was held is beautiful, the weather was absolutely perfect, we spent the morning together as a family involved in a new activity, surrounded by friends and family…no matter that the times got all messed up, or it took forever to give out the ribbons…it doesn’t get any better than that!  Now if we can convince the other two girls to participate next year and figure out a way for Keyan to race too…it will be all good!

Playing Catch-up!

Oh my…it has been entirely way to long since I have blogged.  Life has been just as crazy as ever and time has gotten away from me.  So, without further ado…our life over the past 6 weeks!

Easter…We had a very busy Easter weekend with parties, egg hunts, coloring eggs and lots of great family time.  Our resident Easter Bunny hid 25 eggs inside our house and 105 eggs outside.  This outside hunt is fast becoming a favorite traditions as the entire family get involved.

Easter VIEW SLIDE SHOW DOWNLOAD ALL

Family…One of our nephews played baseball here in Holland the following weekend and we got to spend some great time with their family. It is sort of sad that we live an hour away from each other and rarely get to hang out with them.  Busy schedules keep everyone occupied so we were excited to all have some free time. Their three boys and our five kids make up quite the crew!  We had a lot of fun and realized that all of our kids are old enough to actually get in a little adult conversation as well!  You can’t beat that!

 

                                                              

Cinco de Mayo…Having a child in the Spanish Immersion program at school makes it almost mandatory that you have a fiesta for Cinco de Mayo!  (Besides the fact that I need NO excuse to have Mexican food for dinner!)  We had great food and great times with friends and family.  Jamahl said the dinner prayer all in Spanish and I am pretty sure none of the adults had a dry eye…nor could most of them understand what he was saying!  Such a FUN night!

Fiesta! VIEW SLIDE SHOW DOWNLOAD ALL

Tulip Time…And I end this long update with pictures from this years Tulip Time festivities.  My mom and I worked our butts off making new costumes for the girls but it was so worth it to see them all dressed up.  We didn’t make it down town as much as we normally do, the week just seemed to get away from us but we still had a lot of fun frolicking through the tulips!  You might notice that we have no pictures of Jamahl in his costume.  He did wear it when he and I marched in the parade but after that it was a “no go.”  I knew it was going to be a long shot this year, but I am proud of myself for not getting to upset about it.  He is growing up faster than we are ready….but isn’t that true for all of them?

Tulips VIEW SLIDE SHOW DOWNLOAD ALL

SO, there you have it…our life during the last few weeks.  Jamahl’s swim season has started again, Keyan has been fighting a bacterial infection and a yeast infection in her lungs, we are in the fight of a lifetime with Medicaid, the school year is wrapping up, Paul is training for his 300 mile bike ride, and so much else that fills our days.  We are looking forward to warmer weather and some pool time!

"Bikes for the Rest of Us"-Our miracle story!

This is the event that we attended Saturday morning.  It was such a great experience.  I was very anxious about going and being able to find, and afford the right bike for Keyan.  A few years ago, she received an adapted bike from our local ambucs club, but in the last year, Keyan has lost a lot of her arm strength and some motor planning skills which made it too difficult to use her bike. So, off we went to get some better recommendations.  I literally was obsessing about going....I didn't want to get her hopes up, only to find that we could not provide her with a bike.  So, we all talked about how we were just going to look and see if we could find a new bike.

When we arrived at Mary Free Bed, the kids were all very excited to return to the place that Keyan had spent several weeks last summer.  They all know that MFB has done some great things for Keyan and it was great to see their appreciation and understanding at such a young age.  We were paired up with a therapist that knows Keyan quite well and also understands the different dynamics that Keyan embodies.  She immediately thought of checking out a tandem bike which would allow our family to actually ride bikes together...a dream that we had sort of set aside years ago!  Paul took her for a spin on the tandem bike, the company talked to us about how it could be modified, and than the dreaded money conversation came up....the bike, with it's modifications, rounded out around $7000.00.  HA!!!  Even with partial financial aide...that would not be happening.  So, as my mind began reeling with fundraising ideas, selling a kidney, ect...Our therapist said, "Wait, there is ONE tandem bike in the recycled bikes, let's race over there to take a look at that."

So, our whole crew made it across the parking lot, where the therapist had already asked for the ONE tandem bike to be held for us, to see if it could work.  It was in pretty rough shape, but before we knew it, a company from Illinois came over to see how it could be modified for Keyan, and if we could make it work.  Meanwhile, the therapist and I debated the pros and cons of the tandem bike....allowing her to be part of a family activity and giving us as a family some more freedom, but a tandem bike would not give her the Independence to ride in the cul-de-sac with her siblings.  Such decisions!  Our family headed over to the ambucs station where we explained her current level of functioning and they made some recommendations.  They got her on a bike, with the right seat, an adapted set of handle bars, a pulley system on the petals, and she was actually able to get around.  Jamahl helped her with the steering as I sat and wondered what in the world we were going to do.

Just this week, I was talking to another mom about how on a weekly basis,  Paul and I are making decisions for Keyan that will affect her for a long time...all parents do, but how was I going to choose between her Independence and the freedom a tandem bike would bring to our family?  I had tears in my eyes watching her working so hard at getting that bike to go with her siblings cheering her along.  I knew in my heart, we needed both of these bikes, but, "how do we go about that?"  As we talked with our therapist,the other volunteer that had been paired with us,and several people from the different associations that were present,  two different people said, "You really need both bike options."  They took the words right our of my heart...I didn't even know if that was possible, but I was so grateful that others around us had some to the same conclusion.

In the end, to make a really long story a little shorter, the company from Illinois will be able fix and modify the recycled tandem bike for under $1000.....WAY better than $7000! And I have the contact information to move forward with getting her the tricycle that she can do herself.  I was a little overwhelmed with the miracle that had taken place.  How is it that there was ONE tandem bike in the whole lot of recycled bikes?  How was it, that over 300 disabled kids and adults were helped yesterday, and we were able to fit Keyan for that ONE tandem bike?  How is it that we made the right connections to also be able to move in the direction of getting her her own bike as well?  Why in the world did I loose sleep over this event?  Where was my faith?  There are a lot of answers that could be given, but during our quiet car ride home, while all the kids were plugged into their ipods (thanks mom and dad!), I was reminded that we are so truly blessed.  God had his hand in every moment of our morning....as a matter of fact, God knew how it would turn out, before we even went.  What an incredible feeling to fall into that safety net and be reminded that He does indeed watch out for what we need.  It was amazing!

P.S.  I will do my best to keep you all updated as to the progress of our bikes!  It should be exciting!

The Irish Pub

We LOVE St. Patrick’s Day at our house…we are Irish though and through and so we always make it a special day.  We LOVE being Irish!  Normally, I cook an Irish dinner but this year we decided to take everyone to the local Irish Pub to have dinner and hear live music.  It was so much fun.  We got there at 4:30 and only had to wait a little while for a table.  The kids tried the soda bread and really enjoyed the Irish desserts!  We hope you all had a great Irish day!

Irish Pub VIEW SLIDE SHOW DOWNLOAD ALL

The Power of Facebook

It has been just over a year since I have been on Facebook.  I fought it with all that I had in me.  I had no use for social networking and could not understand why people could not just use email.  However, at that time, Keyan took a major turn in her health status and I suddenly found myself needed to get frequent bits of information to a lot of people.  I needed her story to reach places that went beyond my email list.  I needed support, prayers, ideas, and a way to keep everyone up to speed on the illness rollercoaster that we were on.  I found myself needing to social network!  I turned to Facebook, and am so glad that I set my stubbornness aside because not only has it served as a great way to keep people in the loop but it has been fun to reconnect with friends from my past and make new connections with great people.

A few weeks ago, our family got to experience the power of Facebook firsthand when I sent out a message about Jamahl having surgery.  He was so worried about the surgery itself but also worried about spending the next two weeks recovering.  I simply sent a message to people on my “friends” list asking them to send Jamahl some mail, hoping that the daily mail loot would take his  mind off of things for awhile.Knowing that people are thinking about you, even if you don’t know who they are, really lifts your spirits when you are feeling yucky!  So, from that message, some of our friends sent it on to some of their friends and literally from the day before his surgery to a few days after he returned to school, our mailbox was filled with cards, postcards, packages, letters, stickers, crafts, books, ect.  It was so much fun.  He received mail from over half of the states and several different countries!  He loved trying to figure out the connection of how the person found out about him and he enjoyed seeing where they all came from. 

When I sent the request on Facebook, I didn’t even tell anyone that I was doing it.  I was afraid that my crazy idea would flop…who sends actual mail these days….but my friends, and their friends proved me so wrong.  This pictures is only a portion of the stuff that Jamahl received during his two week recovery so don’t panic if you don’t see yours!!!  A huge thanks to all who participated….you made his weeks at home so much more bearable and I have learned that social networking goes well beyond updating on Keyan’s current health status…it truly is about FRIENDS!

Surgery for Jamahl

Today was the long anticipated day for Jamahl to have his tonsils and adenoids removed.  We have had it scheduled for over two months now and the anticipation has been so hard for him!  He was such a trooper today though.  Last week we took a pre-surgery tour and that really seemed to calm his nerves.  Knowing where he was going to be, being able to ask all about the whole process, and just see all of the ins and outs, really made the whole day go much better.  We had a great doctor, a wonderful OR nurse and a fantastic anesthesiologist who all took excellent care of him.  He received some nerve medication before the procedure and so by the time they came to take him back he was feeling really goofy.  I went back with him to the operating room until he was asleep and he went to sleep so peacefully, smelling his chocolate chip cookie chap stick.  Literally, before Paul and I had time to finish our lunch, the surgeon had us paged.  He told us that his tonsils were very deep and embedded in his throat and that there were lots of "stones", which is a sign is constant infection...in other words, they needed to come out! Just a quick half hour later we were with him in the recovery room.  He struggled a bit in the PACU, sedation apparently makes him overly emotional, but after a few hours of  lots of tears, he calmed downed.  The only thing that would keep his mind off of his pain was the blue raspberry slushies!  Thanks goodness someone had the genius idea to put slushy machines on most floors of the new hospital.  By the time we were able to leave, some five hours after arriving, he was feeling good enough for a chocolate shake.  In true Jamahl fashion, he commented several times while we were there on mow much Keyan was going to love the new hospital...he is always thinking about other!  I just love this kid!  So, tonight he is sleeping in our room with us so that we can make sure everything is alright.  We have to give him pain meds thru the night as well so it could be a long night!  I know that the next two weeks may be rough, but I am so glad to have today behind us.

Back from Cincinnati

I know there are a lot of you wondering how things went last week in Cincinnati so I thought I would post here, in one spot, so that everyone can keep up to speed.  We drove down on Wednesday for a Thursday afternoon appointment.  In order to save Paul’s time off from work, he worked the morning so we didn’t leave until around 12:30.  I didn’t tell Keyan about going until that morning because she doesn’t usually like to be away from the family but she was SUPER excited to see Hans the dog and to have a sleepover at Aunt Bonnie and Uncle Alan’s house.  She could not wait to get out of here!  Anyhow, the trip was non-eventful and we arrived in time for a little play time and then she was off to bed. 

Thursday morning brought a snow storm to Cincinnati…not necessarily a snow storm by Michigan standards, but everyone was on edge on Ohio!  It ended up being a little slippery by the late afternoon but as long as we went slow, everything was fine.  Paul and I had spent hours hashing out what may happen at this appointment and making sure that the two of us were on the same page as to how we wanted things to progress.  Those conversations were not easy ones..rather heart wrenching actually, but I am glad that we could present ourselves as a united front.  So, the appointment did not bring any earth shattering news, but it was a very important appointment that helped everyone get onto the same page.
In a nutshell, she has continued to loose weight which now needs to stop.  She NEEDED to loose the first 10 pounds but we don’t want her to loose any more so the doctors will tweak her TPN and hope to keep her weight stable.  The other topic of discussion was a plan to get her off of the TPN.  TPN is the IV nutrition and unfortunately it is not a long term solution as it does damage to the liver and kidneys and is a breeding ground for infections.  However, the past three months were the first time in Keyan’s entire life that we did not work on advancing her intestinal feeds…and by far these past few months have been the best quality of life she has ever had.  The proof is in the data!  We have always said the Keyan’s body is happiest when she is not being fed, but we have never done a long term test of that and the last three months showed us quite a bit.  She did have a lung infection when we increased from 7 to 8 mls an hour which could be circumstantial…although I tend not to lean that way.  So, we talked at great length about what all this means and came up with a VERY SLOW plan to increase her feeds…and I mean REALLY slow.  I won’t go into the details because it is a lot of medical jargon, but they have worked out some ideas to deal with her intolerance, depending on the symptoms, and we will go from there.  The overall message from the docs was that while we would all love to get her off of TPN next week,  her very complicated body is not going to allow that.  She is in control of what happens and her body will direct our path. Furthermore the doctors stated the while TPN is by no means an ideal therapy, in some kids, it is all they have.  You deal with what you have!  We still have no root cause for this intestinal failure so to push forward with the same things we have been doing in the past would be negligent.  None of us are willing to sacrifice the quality of life that she has right now, so that means that the plan is a work in progress.  It is one that Paul and I are pleased with, and one that does in fact keep Keyan’s wellbeing in mind.

As we were leaving the hospital hours later, our minds were trying to keep everything straight and our hearts were trying to absorb the impact of the decisions that had been made when we came across a sign.  It read..

“Cincinnati Children’s Medical Center has been ranked by U.S. News and World Report #1 in the nation for their Gastrointestinal department”

I really felt like God was talking to me at that moment.  You see, the further we get down this road of unknown issues, the more I begin to question if we are doing all that we can for our daughter.  We said Cincinnati would be it…we would not drag her from doctor to doctor, or half way around the globe to continue to search for answers.  This is it for us right now and we feel very strongly about it.  However, that does not mean that in the stillness of the night, doubts don’t come knocking at our hearts.  “Have we done the very best for Keyan?  Is there someone else who could help her?  What about a more alternative approach?  Are we missing something?  Are we giving up?”…I could go on and on.  When I read that sign aloud to Paul, I had a peace wash over me that I will cling to from here on out.  “This is it…there is no one better…we are doing everything that we can, and we are doing it to the best of our abilities.”  I know that some would argue with our decision, and that is alright.  It still comes back to the fact that we have been commissioned to carry this very heavy burden and we will be the ones held accountable for her life.  It is up to us, and after our time in Cincinnati this past week, I can lay my head on my pillow at night knowing that all is well.