Thanksgiving

I know that I need to blog about the girls birthday and I promise you some great pictures from the day...but I just need to blog!

Thanksgiving falls in a busy week here in the Hogan household.  The girls birthday was Sunday, obviously Thanksgiving is today, and then Jamahl turns 9 on Saturday.  With my broken foot, I have been somewhat useless and have had a lot of time to think.  I have truly been overwhelmed this week with the blessings of home.  Last year Keyan entered the hospital in October and basically stayed thru July.  As you all know, she was home on and off but the majority of that time she was away from home.  We spent her birthday, Thanksgiving, Jamahl's birthday, Christmas, ect. all at our second home, nine center, at DeVos Children's Hospital.  As we sang "Happy Birthday" this year around the table, I choked back my tears.  I couldn't say what I was thankful for today without fighting the same problem, and every time I kiss my kids precious heads, the lump comes to my throat.  They all have commented on the fact that I am crying, and I try to explain they are tears of happiness, but you know kids...they just sort of look at me and give me a hug.

What strikes me the most, is that I know I only have these feelings of deep appreciation for home and my family because of  living thru the hellish past year.  I hated moments of the the last year...I begged to not have them continue, I cried and yelled at God for letting my family suffer the pains of illness. But all of those things have brought me to today.  I have learned to live for today...nothing else.  I have learned to value the small quiet moments in life and I am truly grateful.  So many people in this life go thru the paces, are always seeking the next best thing, fight discontentment, focus on tomorrow, and miss the life they are living NOW!  Before this last year, I was one of them...I was bogged down by our schedule, I was focused on "what might happen", I was tired of the battles.  Today, I am still tired, I still worry, and fight battles left and right, but it is with TODAY being of the utmost priority.  I sat in our crowded kitchen, around our hand-me-down table, and cried because I was here.  I was surrounded by my kids, my husband, my parents, and later my brother and his family.  That is what life is about.  I looked at Keyan sitting across from me at the dinner table...she was bored, would have rather been watching a movie, but her presence was breath taking.  She lives for the moment..she has learned better than any of us that life is full of unknowns and she yet she LIVES her life.

It isn't just Keyan.  We have all changed after the year we have lived through.  The kids are all more aware of today.  I can't help but find the irony in the fact that the days where I would have traded our situation for anything, have now taught us so much.  Does it mean that everything is great?  Of course not, but I sure am thankful for the lessons we have learned.  I am thankful we have begun to appreciate what life is about before it is too late.  I am thankful for the opportunity to learn how to really love my family from the depths of my soul, and I am  so grateful for a fantastic family to live this journey with.

Exhausting but so much fun!

We had a great Halloween weekend but boy was it exhausting!  Friday night the school had their Fall Festival and the kids had a great time hanging out with their friends.  It is bittersweet to watch the kids becoming more and more independent.  Jamahl went off with his buddies checking in periodically, and the girls invited their friends to hang out with us.  I can clearly remember the girls going to the festival in their matching fairy costumes and needing 4 adults for 4 kids.  WOW!  That night after the festival, Jamahl was invited to go to a haunted forest with two friends.  We brought him home to get a warmer coat and I could tell he was VERY concerned about being scared.  Paul and I tried to tell him it was going to be alright but as the minutes ticked by, his anxiety kept climbing.  His friends finally arrived and the one mom came in and said, “Jamahl, are you ready for some spooky fun?” Jamahl replied, “Well, actually, I am sort of scared!”  The mom kind of joked and said, “don’t worry, I can hold your hand.”  To which Jamahl gave a huge sigh of relief and said, “That would be great!”  How cute is that?  She was totally joking but didn’t even realize it…it did my heart good to know that he isn’t to grown up to accept some comforting!

Saturday evening my brother, his wife, and my niece came to have a chili supper and than trick-or-treat in our neighborhood.  They save the day every year by bringing a gold cart so that Keyan doesn’t have to use her wheelchair.  My dad hooks up a cart to his four wheeler, we all pile in, and away we go.  I have to admit that I about fell over from shock when Paul put scrubs on and dressed up as a doctor.  I have begged him for years to dress up and he has always refused.  It was fun to have him join in the fun!

Then, Sunday afternoon on our way up to Muskegon, we stopped to visit one of our home health nurses and her horses.  The kids had a great time getting to know the horse, the mini horses, feeding them carrots, and taking a quick ride.  This is the first time that Keyan has gotten up close and personal with a horse and she did great.  Jane has been telling her about these horses for months, in hopes that she would be excited instead of scared.  When we pulled in, she said, “Look, Jane was right, she does have horses!”  Jane and her kids were such gracious hostesses and we had so much fun getting to know them all.    After all of that fun, we went up to Muskegon to have supper with my Aunt, Uncle, and cousins, did some more trick-or-treating at my brothers neighborhood, and than finally came back home very tired and worn out, but it was all VERY worth it.

We repeated tradition once again and Steve offered to buy any candy that the kids were willing to sell.  Keyan of course sold all of hers and made quite a bit of money.  Jamahl, Sidney, and Abby, sold about half of theirs and McKenzy is our future blackjack player.  She decided to keep just a few pieces of her candy and than positioned herself directly across from Steve and his money.  She would pick a piece of candy and move it half way across the table leaving her finger on it.  Once she and Steve had come to an agreement on the amount, she would push it over to him the rest of the way, all the while making minimal eye contact!  It was so cute.  Not only do we have to give a thank-you to Steve for buying the candy, but he also made Jamahl’s costume and their wasn’t a prouder child this weekend than my Captain Rex.  Once again, Steve saves the day!

Without going into a whole saga about our life, while I was decompressing from our busy weekend, the thing that brought the most joy to me was being able to be with my parents, my brother and his family.  I was struck with the reality that many families are not as fortunate as we are to be so close both physically and emotionally.  It means a lot to have them all be such a part of our lives and I am just really thankful to have it be that way.  To have a husband who loves me, five beautiful kids who know what it means to appreciate life, and all be together, does my heart good.  It may not be the norm in our society today, but it sure feels right!  It was great to be surrounded by people that love us and to just have fun!

Cincinnati

I apologize for taking so long to update the blog upon returning from our trip to Cincinnati.  I know that many of you have been waiting to find out how things went.  I have been busy processing it all, and discussing what it all means with Paul.   I have to say a huge “thank you” to my Mom, who made it possible for Paul to go with us this time.  It would have been twice as difficult had he not been there listening to the doctors, asking questions, and helping me give all the details of Keyan’s health history.

So, what did they find?  To sum it up, the doctor told us that 99% of kids with chronic GI and metabolic problems have something wrong wither anatomically or structurally.  At this point, they can know with absolute certainty that Keyan does not fit into that 99 %.  Boy is that a surprise!  Her problems are not caused by a structural problem, so that leaves all of the “exotic” disease.  And yes, he used the word “exotic”…not the greatest of terms in my opinion.  So, now they will do their best to figure out what rare disease is causing our precious girl to be in her current health situation.  We will not put her thru a ton of invasive procedures, and the doctor reassured us that doing so would not be necessary, but it could be a long haul.  All in all, I would give just about anything to have a diagnosis, and was discouraged to not get one.  However, I am trying really hard to be positive and be thankful that at least the doctors are not giving up on her.  They are still willing to keep seeking out the answers.  Obviously, our greatest fear is that we won’t figure it our before the next onslaught of infections.  The bottom line is when a child is TPN dependant, with a central line, infections are part of the deal.  Luckily, for right now, we have the infections under control but the reality is that it is just a matter of time before they rear their ugly heads.

The plan for now is to put her food back to 7mls/hr for a couple of weeks to try and reestablish a base line and maybe get her potassium back under control. (For those that don’t know, it has been running low again and we had to make a trip to the ER for a bolus last week.)  After that, we will trial a new medication which if it happened to help, would direct the doctors to some rare disease.  If it doesn’t help, than we move on from there.  We should not have to return to Cincinnati for a couple of months which will be really good on our time and budget. 

So, for now, we keep living this life, fighting fires, trying to keep things balanced, enjoying life outside of the hospital, and just being a family.  Meanwhile, the doctors follow all of the rabbit trails until we can hopefully find the right one.  Dear God…grant us patience, and please, I beg, keep our girl safe.

A kindergarten fieldtrip

Yesterday the girl’s class went on a field trip to the “Post Family Farm.”  They had actually been on this same field trip when they were in Pre-K so they were the experts for the day.  Mom and I went along to chaperone, and boy did we have fun.  We went on a hay ride out to the pumpkin patch to choose “the perfect pumpkin”, we listened to “the pollination story” (very interesting for five year olds!), ate fantastic pumpkin donuts and apple cider, and visited the farm animals.  It was fun watching the girls with their friends and getting to know the other kids on their class. Between Jamahl and the girls, our kids have been on this field trip four different times..it was sort of sad to realize that this will be our last time.  Oh well, off to bigger adventures I guess!

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A day at Ludington State Park

We had a great time spending the day with my parents, brother, sister-in-law, and our niece up in Ludington State Park.  It was really windy but the sun was shining so we found spots to get out of the wind and had a great day.  We watched people trying to catch Salmon, we had a picnic lunch in the dunes, climbed and ran all over the dunes, had ice cream, visited the cabin that Grammie and Poppie were staying in, and ended the night at the Mexican restaurant.  It was one of those days that makes you stop and count your blessings.

Ice Cream Social

We had a great night at Cold Stone Creamery raising money for the Make-A-Wish foundation and gathering together with our friends and support team.  This is our third year to go to this event and we have always used it to celebrate how far Keyan has come in the last year.  It always means so much to see the people turn out to give Keyan a hug and show us that no matter how busy everyone gets, they are still pulling for our little girl.  This year was no exception!  We had a great night with family and friends.  It was a great reminder that we are not alone in this journey!

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A night with Duff Goldman-the cake guy

***This blog entry was written by my guest blogger, my husband!  Thanks Paul for taking the kids to the event and thanks even more for sharing it on the blog!***

We were very fortunate to be invited to this exciting event. It was Hospice of Michigan’s 30^th birthday and Duff from Ace of Cakes was the guest speaker (and cake maker for the event). Honestly, no one really knew what to expect for this outing. It turned out to be really fun and the kids, myself, and my mother-in-law Gayle had a great time. Unfortunately, due to Keyan’s planned trip to Cincinnati Children’s Hospital, Keyan and Stephanie weren’t able to attend.

Stephanie and I made a decision the last time Keyan was in the hospital to talk with hospice. This was after one of the doctors from Mary Freebed had suggested it. While this decision is controversial in many people’s minds and hearts, we were very scared with her last admittance. She was very ill and we had a lot to cope with. We started to wonder how we were going to deal with the possibility of Keyan’s mortality and this is when we decided to talk to hospice. Sheila was our case worker who came to talk to us and we went over many difficult things, but in the end it was very good. Stephanie and I have a little better grip on the possibility of something going really wrong. Hopefully we will never need to engage hospice for Keyan, but they are there for us if needed. It is a terrible thing to have to think about so I will spare you the rest of the details. Just know it has been difficult to think about and deal with.

When we arrived at DeVos Performance Hall the people at the front door were very nice, although confused about some things. We were shown back to the room they had set up for Pediatric families connected to Hospice. It was an awesome setup. There was food from Panera Bread and lots of fun activities for the kids. Once the kids finished eating we broke out the crafts and the kids decorated their baker’s hats. They also decorated cookies with frosting and sprinkles. McKenzy ate the frosting as soon as she was finished decorating the cake. No need for a cookie at all! Abby was teased by the clown for how her name was spelled. He said “With two b’s in your name it is pronounced A-B-B-y. She laughed and had fun with that. Jamahl made a helmet from his hat instead of a hat. Star Wars in mind, no doubt. Sidney was her quiet self, but laughed at the clown and had fun with the activities.

Then Duff arrived! First thing the kids said is “He’s shorter than mommy!” This was pretty close to true. I think he might have edged her out by a little bit, but not much. He was very laid back. He went around to all of the tables in the room and made a point to talk with every child. Very kind! Finally he made it around to our table (the last one he had to stop at, of course). He came and shook my hand. I quickly explained that Keyan and Stephanie were not able to make it and he said he was sorry to hear that. I asked him if he would let us take a picture with all of the kids. “Of course!” he said. I even got in on the action. All I can say is Duff is a nice guy and very kind to do what he did with all of the kids at the event. He spent more time with the kids than he did with the big wigs that spent hundreds of dollars to get into the VIP room. This says a lot about his character to me. The last thing he said to me was “Good luck with all of that!” , meaning four girls in a house all the same age, at the same time. I laughed and said thanks. I will probably need it as the girls get older, buy honestly I do feel lucky. It isn’t easy, but it is rewarding.

One of the most touching, but difficult times of the night was when the CEO of Hospice, Dottie Deremo came and introduced herself. She asked how we were connected to Hospice, and I explained our situation. She said she was sorry that we had to meet due to Keyan’s situation. She shook my hand, but in the process she said “Do you mind if I give you a hug? It seems like you could use one “. I almost lost it right then and there. The real crazy thing about it was the Ariel song “Part of your world” was being played at that moment by a small band in the corner of the room. This is Keyan’s favorite song in the world (as most people know)! At that moment I missed Keyan and Stephanie so much. Needless to say, Dottie was right. I needed a hug more than I knew. Not easy for a guy to admit, but it put me at ease about being there without them.

Then we went into the auditorium and listened to Duff talk about his career and his life. He talked about how he got into the business and shared some funny stories about his life and his philosophies on work. It got a little long for the kids, but it was entertaining for the adults in the audience. Duff has lived an interesting life so far and it shows how sometimes people find the path to their perfect job. He is lucky to have come across this in life and he doesn’t let it go to his head. He seemed like an average guy who likes to share his life with everyone. Not really any different than you see on TV. It was very cool to be able to meet him and hear his story. While I’m not an avid fan, he turned out to be a great person! The kids loved the night. Unfortunately we didn’t get a chance to have cake. It was already 8:30pm and the kids were wiped out by this time. We decided to take them home and get them to bed. They talked about the night all the way home. It was a great night out and wouldn’t have happened if Keyan wasn’t in our lives!