Ice Skating!

I hope that you all had as good of a Christmas as we did and hopefully I will find some time to post some pictures, but Paul is off this week, and we are trying to make some fun family memories.  So, today we headed to the ice arena.  I probably do not need to state the obvious, but I sat on the side lines due to my foot injury but the ret of the family had a blast.  McKenzy and Keyan took right to it and were UNSTOPPABLE.  The only thing that got Keyan to finally take a break is when her trach came out!  Abagayle followed close behind them and once Sidney relaxed a little, she was making it around the ice as well.  Jamahl was very apprehensive as the last time he went ice skating he ended up with stitches….and if you know Jamahl at all, he is a worrier.  However, he did really well and even had some fun too.  I know I probably say this all of the time, but as I was watching my kids faces as they skated beside my parents and Paul, I got a little teary at the fact that my kids have such special grandparents.  We are all so lucky to have each other and are blessed to be able to make fun memories together.  After a warming drink of hot chocolate, they were all asking when we could go again…now that is good family fun!

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A Magical Visit

We had a very special guest visit our house this evening!  We had talked about someone special coming, but when Santa arrived, the kids were all stunned!  We took him down near the Christmas tree and each of the kids took turns talking to Santa.  Keyan asked for a teddy bear, McKenzy asked for a surprise, Abagayle told him she wanted jewelry, Sidney asked for a Barbie, and Jamahl asked for Legos…which Santa said was one of his favorite things too!  Santa showed them Rudolph’s jingle bell harness, and his magical keys that help him get into homes that don’t have chimneys.  He told us that Mrs. Claus really likes to pick out special things for each of them and helps him make sure every child has a special Christmas.

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Jamahl had LOTS of questions about his toy sack, getting past our nurses, how the reindeer fly, and if he knew our elf on the shelf, Magic Mike.  Santa knew just how to answer his questions and you could see Jamahl’s eyes growing bigger and bigger.
Obviously, we are all feeling so much joy to have Keyan home with us this Christmas season.  Your life is forever changed when you go through a holiday season with a child in the hospital.  The reality for us is that the overall picture of her health has not changed.  The intestinal failure is still present, she is still TPN dependant, and we live constantly walking on egg shells waiting for her to have a medical crisis.  However, her day-to-day life is SOOO improved and we now know that that is really all that matters.  With the help of Cincinnati, Hospice, and several of our doctors here in Grand Rapids, we have given her the quality of life that Paul and I so desperately longed for.  This is what life is all about.  When faced with the mortality of someone you hold so precious, the value of every joyful minute engraves memories on your soul.  The visit from Santa was just that….a magical moment to etch into our hearts and minds.  One that will carry us thru the tough times of the year to come.  A memory to share with each other for years to come and reminisce about the awe that it inspired.  Tonight, our hearts are full, our minds are reeling with questions, and we are so blessed to be together.  I just want to sit very still and savor the fullness of my heart!

Jamahl's letter to Santa

Brace yourself to experience the big heart of this special nine year old!

Dear Santa,

Hi!  This Christmas I want the lego Star Wars "Death Star" and the lego "Slav I".  The last gift I want is to have my sister not be in the hospital this Christmas.

Love,

Jamahl Hogan

(My Dad says that just for that he should get everything on his list....never mind that the "Death Star is $400!!!  Nice thought Dad!!)



Birthdays 2010

Birthday week always seems like a blur around this house.  Between eating cake for an entire week, making all the school treats and swimming treats, and squeezing Thanksgiving in between the two special days, when it is all said and done, it is a whirlwind filled with good time and memories. 

The girls were thrilled to be turning six although I had done my best to convince them to stay five, they would have none of it!  They all agreed on spaghetti for dinner and got dolls and doll accessories for gifts.  Later in the week, we took a friend of theirs to all go and see "Tangled" as an extended celebration. 

Jamahl turned nine six days later.  He and Paul took a friend of his to see a movie that afternoon and he had requested spaghetti pie for dinner.  His gifts revolved around swimming and Star Wars...big surprise huh?  The boy LOVES to swim and is an expert at Star Wars!

I have a hard time believing that we now have children who are six and nine years old!  Things are changing at our house and change is hard for this mommy.  The kids are becoming more independent, more vocal about their concerns and wishes, and more thoughtful and introspective.  While I have a hard time, it is fun to watch them become little people.  They have dreams, desires, feelings, and fears.  While not always fun to deal with, it means they are thinking and paying attention to the world around them.  While the statement, "bigger kids equals bigger problems" is definitely true, I don't want to miss the steps of the journey that get us all through those times.  I know we are only on the cusp of school dilemmas, friend problems, boyfriends and girlfriends, realizing that the world isn't a fair and just place, and just plain growing up, but all of that stuff encompasses this thing we call life.  We were all so grateful to have Keyan home this year for the birthdays...last year she was in the hospital.  Those tough times are molding and shaping our family for life.  As the kids get older, I realize more and more than it is not about the end result, but rather the process of getting there!  Enjoy the pictures!

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!

The Melting Pot

Keyan and I were so glad to be home but I was pretty depressed to wake up Saturday morning to thunderstorms.  BUMMER!  One of the nice things about Cincinnati is that it was still in the mid eighties and sunny!  We used the day to clean up the house (even under the girl’s beds!), do laundry, unpack, and catch up on Mommy being gone.  I was feeling somewhat frustrated though at our lack of something to do.  I have written many times about the limitations we have not only because there are so many of us but mostly because we have a child who is medically fragile.  We can not just pick up and go spend the night at a hotel, we can’t go to Crazy Bounce or the Aquatic Center, we have weather limitations, temperature limitations, and just plain ‘ol energy limitations.  Don’t get me wrong, I think we do a pretty good job at keeping the kids busy and exposing them to as much as we can, but some days, it is just depressing to realize that this is not how you envisioned your life….basically, I was having a pity party for myself…and it felt sort of good!

 

The kids had been very hungry for fondue which we make here at home every once in awhile so I was planning on doing that for supper but as I thought about the shopping, chopping, cooking, and cleaning that was required, it made me even more depressed.  That is when we decided to treat the family to a restaurant in Grand Rapids called “The Melting Pot”.  We put on nice clothes and went and had a four course meal that was all fondue…although it was all VERY good, I could have just had the chocolate dessert fondue and been just as happy!  The kids tried a bunch of new foods including sushi grade tuna, lime chili shrimp, Asian dumplings, ect, and we all got to spend three hours experiencing something new and enjoying being together as a family.  And don’t have a heart attack..we called ahead and did some research on the menu and while it is not a place that we could afford to eat all of the time, we managed to do it fairly reasonably all things considered.  It felt good to be all cozied into a booth, laughing, talking, and reconnecting after Keyan and I had been gone. It may not be a typical family outing, but it was a great family outing for the Hogan Clan!

 

 

 

And just in case any of you are worried about the fact that Keyan doesn’t eat…she did just fine using her fondue forks as drum sticks and telling us all knock-knock jokes…she cracks herself up!  She doesn’t care what she is doing, as long as she is not stuck in a hospital room!

Home!!!

If nothing changes, we got the word this afternoon that we could be discharged tomorrow!  I can only hope that everything is smooth sailing thru the night and we can go home.  The last four days have been difficult on Keyan both physically and emotionally so it will be a relief to have it behind us.  The physicians and I have done a lot of testing, information gathering, getting to know each other, hashing things out, and sizing each other up.  Trust does not come inherently in situations like this, from either side, so we have had several discussions just feeling out our similarities and differences.  I am sure that they have seen my stubborn side, but hope that they see that the stubbornness only comes in advocating for my daughter.  I have learned a lot about myself in the last week. I have been pushed to my limits emotionally and have done hours of soul and heart searching.  This team needed to know where we are at as parents.  They needed to know that we will not give up on her, but we will not let them do do things just to have something to do….it is a fine line to understand and seeing that the social worker came into talk to me after I asked them not to advance her feeds, I am not sure they totally understand our take on things.  That is alright.  My number one priority is Keyan, not pleasing the doctors.  The GI doctor and I had a good discussion about our desires.  We did not come here to advance her feeds without reason.  We have done that for the last three years.  We know what it does to her and how it makes her feel.  Without a definitive change or understanding of what her body is doing, we will only be advancing her feed VERY slowly.  So, that leaves us at the point where we can go home.  We are making a few changes tonight with her TPN and are keeping our fingers crossed that it goes alright.  The results from most of the testing will not be back for 3-4 weeks so we will come back at that point to discuss what they have found.  The neurologists were in and asked a ton of questions and observed her for quite some time and they will also be conferring with our admitting doctor adding their thoughts to the mix.

This was a necessary step of exploration on the road to discovering the nuances of Keyan.  It was difficult, but good, and boy am I glad it is coming to an end.  I have learned that it is easy to advocate for Keyan when it is with people whom I know, but much harder to stand up to people that I don’t.  I have learned that despite that, I will do what is best for my daughter, putting aside my fears and placing her needs above all.  I have learned that my husband and I have a strength that only comes from trials.  It feels good to be united in thought with him because we are the ones that God has commissioned Keyan to.  I have faced the sight of my daughter “checking out” to preserve her soul and while that makes me really sad, I am also so proud of her coping techniques.  She is an amazing little girl who has challenged me and changed me into a better person. How lucky am I?

Not much to report

Oh what a day…let me see if I can portray the morning that we had.  Yesterday afternoon, the attending doctor from the floor came and told me that they had changed the MRI that was scheduled for today to some sort of fancy, specialized CT scan that would take pictures of her small bowel.  I talked with Child Life about what the test would entail and decided that I would wait until this morning to talk to Keyan about it. She woke up, watched a little nick jr. (thank goodness for that TV channel here at the hospital), and than I did my best to explain the procedure.  She didn't get too upset until the nurse came in to start a peripheral IV.  She knows as soon as they put the blue band around her arm that nothing good is going to happen.  As many of you know, Keyan is just about impossible to start an IV on due to tiny veins that are squiggly and scarred from so much use.  After a few people tried, the charge nurse was finally able to get one so we headed down to radiology.  At this point I learned that it was up to me to give Keyan 450 ml of contrast into her stomach via her G-tube over the course of 40 minutes.  Ok, here is the problem….Keyan does not use her stomach…she gets 2 medications into her tummy that total about 10 ml.  She doesn’t use her stomach because it causes her great pain, makes her retch (she is unable to vomit), and just makes her overall miserable.  So, I took a deep breath, told her I would pull it back out as soon as the test was over, braced my shaking hand, and began to push this thick sticky liquid into my baby’s stomach.

As you can imagine it did not take long before she was very uncomfortable and continually retching…so much so that the liquid was profusely leaking back out form her stoma.  It was horrible.  “Hang in there little one, we are almost done”, were the only words I could find in my rattled brain.  As soon as the 40 minutes were up, I made sure we were starting the test.  We got her positioned on the table, I got my lead apron on, and the tech went to push the IV contrast into the IV they had put in just 45 minutes ago.  As she began to  push Keyan let out a scream that she uses only in extreme circumstance.  I knew something was terribly wrong. The IV had gone bad. It was infiltrating and bruising before our eyes.  Out it came, with Keyan beside herself.  I hang my head in disbelief as the tech tries to find another spot to put a new IV in.  Two different people tried and than they called the IV team and had one of the IV nurses come to radiology and they were able to get access that would never last long but would get us through the procedure.  But wait, it gets better.  Now that it has taken almost an hour to get a new IV, we have to give her more contrast into  her stomach.  By this point, I had tears running down my checks as I pushed the syringe of “crap” into her.  She was so stoic…she is very used to her tummy hurting, but only I could tell that she was staring off, removing herself from the situation in order to protect herself.  How much more must she endure?  All for information gathering???? I know that it was important but “wow”, it is so hard to put her through it. 

By the way, the results are back…everything is normal.

Do I need to say anything else?  I know it is good that it was normal but I REALLY wish we could figure why she is having such a hard time.]

The rest of the day involved getting the IV out, and removing all of the tape that everyone put on her while they were trying to get one placed.  She also had physical, occupational, and speech therapy this afternoon.  And if you know anything about Keyan, she spent the remainder of the evening watching movies and doing puzzles.  The best part of the day was when Uncle Alan and Aunt Bonnie surprised me with a visit and a piece of chocolate raspberry truffle cheesecake!  Boy that sure helped cheer me up.

Our admitting doctor was out of the hospital today but will be back tomorrow so I am hoping to make some more progress in coming up with a plan.  I guess I will just have to wait and see.

The long awaited day

We made it to Cincinnati late in the day on Saturday and were admitted to the hospital Sunday around 1pm.  I did convince my in-laws to stop for a quick brunch at the Cheesecake Factory before dropping us off and it is a good thing because the rest of the day was a whirlwind of activity and there was not a whole lot of time for eating.  We got settled into our room, answered the 100 questions about Keyan’s past medical history, sorted out medications and TPN orders, and started to acclimate ourselves to this new environment.  Around 4:00, they came in with the stuff to prep her for her test on Monday.  Now, I have no idea why I never realized what would be happening…she has had these scopes before, but I was not mentally prepared for the GI cleansing. (Everything you have heard about prepping for a colonoscopy is bad enough for an adult!)  Here is where things start to fall apart.  Without going into too many details, Keyan is a little girl with CHRONIC diarrhea, so we all figured the prep would not take too long.  Of course we were WRONG!!!  Her body decided to hang onto tall of the fluid it was getting. It was horrible.  We went from fluids into her tube to enemas, and finally at 2am this morning the doctor resorted to irrigation. It was horrible.  She was retching and in so much pain that although the last attempt was certainly not pleasant, it at least got the stupid process over and done with.  We gave her lots of anti-nausea meds and she was finally able to get some sleep. This morning when they weighed her, she was retaining almost 3lbs of extra fluid weight.  Her gut just did not mange well.  I guess that was data in and of itself!\

This morning they arrived an hour early to take her down to the OR and I was in the shower…I know it would go like that but I just figured they would have to weight a few minutes…you learn a lot after five years of this.  When it comes to certain things, a hospital is a hospital is a hospital.  Premiere children's hospital or not, you can never rely on their time schedule.  She charmed everyone in pre-op so by the time I left her I knew they were going to take good care of her.  She was scheduled to have a new set of ear tubes put in, an upper and lower endoscopy, and a new GJ tube put in.  She was away form me for about an hour and a half but Paul’s Aunt and Uncle that live near the area came and sat with me in the waiting room which was so nice.  It has been an awfully long time since I have not sat in those waiting rooms pacing by myself!

In the end, the ear tubes did not go quite as planned.  They were able to put a tube in the left ear but the right eat had a large perforation in the ear drum from reoccurring infections so they couldn’t put a tube in that one.  I was really bummed because that means she will need another procedure down the road to repair the hole and we still will not have a very accurate understanding of her hearing.  The GJ tube was replaced without any problems and the  scopes all looked unremarkable..in other words to the naked eye everything seems normal.  This came as no surprise but was still a little discouraging.  I sat and talked with the doctors for a little while and they said that today was just an information gathering day..tomorrow will be another one form the sounds of it!  We talked at length about the biopsies they are running and some of the tests will not be back for a number of weeks.  It looks like there will some other specialists weighing in which should be helpful and as long as I can remain patient, we will just keep gathering information….answers would be so much nicer but I know that is not the way this works.  She had a rough afternoon with a lot of ear pain and more stomach pain and lots of nausea.  We finally got her to settle down enough to take a nap and when she woke up she was feeling much better. 

So, not a whole lot of excitement, but it is good to be in the trenches getting the work load out of the way piece by piece.  Tomorrow she will have some more tests and I should be talking with some different doctors…I will update again when I get a chance!

On the road again

Tomorrow morning bright and early, Keyan and I will be headed back to Cincinnati for the long awaited elective admission.  We have been planning this trip since the end of July.  She will be admitted to the hospital on Sunday and go into the operating room sometime Monday to have exploratory scopes searching every crevice of her GI tract in the hopes of finding the cause for her intestinal failure.  Beyond Monday, we have no idea what will be happening or how long we will be there.  It should be somewhere in the vicinity of a week or so depending on the plan they put together. 

To say I am nervous is an understatement.  I hate the fact that we are going without Paul.  I hate the fact that we are choosing to put her into the hospital when she is “healthy”, I really dislike how some of the other kids cried tonight when we talked about Mommy and Keyan having to leave…the poor things have no idea if it will be a short time or long one.   I despise the fact that Keyan got visually upset when we talked about going to the hospital. I hate the fact that we are forced to hang all of our hope on the doorstep of these doctors. None of these things really matter though because we need a miracle, and nothing short of one.  Children can not sustain life for any extended time the way Keyan is living now.  That is our reality.  It doesn’t matter how much I hate any of this, it is what has to be done if we have any chance of keeping Keyan with us.  So, I am going to will myself to face this crossroad with as much stamina, patience, calmness, and trust that I can muster so that I can continue to advocate for our precious little girl.  Please keep us all in your thought…not just Keyan and I but the rest of the clan back at home, left to carry on with the weight of worry on their shoulders.

School Days

I simply can not believe that summer break has come to an end.  Our entire family has lived in denial of the fact that the kids would be loosing their freedom, we would have to get back to a schedule, and our life of lazy pool days and unlimited “Phineus and Ferb” over and over again would all be coming to an end.  Keyan was THRILLED to be going back to school, McKenzy, Sidney, and Abby were moderately excited about starting kindergarten although they were very concerned about having a new teacher, and Jamahl faced the first day with great disdain.  Many mornings over the last month, he would stand in front of the calendar counting the days and willing time to stop.  It was heartbreaking. 

As the day neared we had lots of questions about new teachers, new routines, new friends, and plenty of anxiety from all the kids.  The good news was that besides mommy, no one had any tears that first morning.  I was so proud of Jamahl.  Despite the fact that he would rather be just about anywhere else, he put a smile on his face and braved his nemesis.   As a parent it was one of those moments when I wanted to protect him from his fears but knew that it was one of those times that I had to let him fight his own battle.  He did such a great job and continues to seemingly “enjoy” his days thus far.

The girls were a whole different story.  They had new shoes, new backpacks (except for Sidney who can not find the PERFECT one), and they were ready to go.  It was such a reminder of how they have eachother to lean on.  While at times they may wish for some alone time, in cases like this there is certainly strength in numbers.  I couldn’t help but think how lucky they are. 

As for me…I had a nice quite lunch with Paul and than cried the entire time I was grocery shopping.  I Know that I will learn to enjoy my time and use it to get my never ending “to-do” list narrowed down, but for now, I am allowing myself to grieve this new beginning.  How is it possible that my babies are starting kindergarten and my first born is in third grade?  Where will this journey take us, and  how will the ride be?  Change is hard…

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Family Camp 2010

We have been looking forward to Family Camp at Camp Geneva all summer long and the weekend did not disappoint us. Family Camp starts Friday evening and goes until Monday after lunch. It is a great time to regroup as a family before the craziness of school starts up and is a great distraction for those of my children who dread going back to school. It is made even better by our friends joining us. Last year, the Smoker family lived in Indiana so when we invited them to join us, it was not that big of deal. Just a few months ago however, they moved to Maryland...that left all of us uncertain about whether they would be able to make the trip out but indeed they did and we were so thrilled. My kids were jumping up and down in the van when we pulled in and Gretchen, Luke, and the kids were there waiting for us.

Despite the weather being cold and windy, we had a great time climbing through the obstacle course, playing on playgrounds, building and racing our cardboard and duct tape boat, hanging out with our friends, making new ones, learning how to sqaure dance...and yes, Paul joined me and did quite well. The sun came out just in time for a little pool time, we ate, and ate some more, and just overall had an excellent time being together. It probably goes without saying, but after the year that Keyan has had with her health we didn't take a minute of our time at camp for granted. I spent many moments wiping the tears from my eyes as I watched her living life to the fullest. It was a great way to end our summer and be reminded about the importance and strength of eachother! Thanks so much Gretchen and Luke for driving through the night to join us. It really did mean so much to us!

This would only happen to me…

I know that I normally post about the kids and all of the fun stuff that we do but I just have to share what happened to me today.  I had an appointment to have my annual physical.  Obviously, no woman looks forward to that appointment but this is the doctor that helps me regulate my hormones and I desperately needed to see him.  Not to mention that I have been trying to get there for 6 months and every single time, Keyan would end up in the hospital, and I would have to reschedule it.  So, I was very happy that today seemed to be the day that everything was going to fall in line.

My appointment was scheduled for 3:30, and this particular doctor is known to often be running behind, so it is not unusual to wait a little while.  Besides, I was prepared for some good quiet time to get some reading done, so I wasn’t really worried about waiting.  The nurse called me back after about 20 minutes, checks my vitals, measures how tall I am (aren’t I too young to start shrinking?), asks me all of the important questions, and than shows me to my room.  She hands me a little gown and an even littler sheet and says “the doctor will be right in!”  I take off every last stitch of clothes, put on the flimsy gown, try to cover everything else up with the sheet, and take up my obligatory place up on the table.  I get out the ipad, pull up my book, try once again to cover my self up and settle in to wait.

Obviously, I spend A LOT of time in doctors offices with Keyan.  I am VERY accustomed to waiting….but I also have an ongoing fear of being forgotten in those little rooms.  Maybe it is an irrational fear, maybe that never happens, but I always get a little worried about it.  So, I am reading along watching the time slip away and it is nearing 5pm.  I take a deep breath, tell my self to calm down and try to focus on my book.  Suddenly, it is 5:30 and I realize that I can’t hear anything.  It is eerily quiet.  Now I am in a quandary.  Do I put my clothes back on to check about what is going on or do I risk it and go out in my gown?  I figure I am not taking the time to put my clothes on so I wrap everything around me as tight as I can and step out into the hall.  I can’t see or hear anyone.  I wonder around a little bit and finally start nervously yelling “hello???” “HELLO????”  Finally from a dark hallway appears a nurse.  “Did you all forget about me?”  I asked, not sure whether to laugh or cry.  “Oh dear,” she says, “I thought someone had told you that the doctor had an emergency and had to leave but he IS planning on coming back to finish your appointment!”  WHAT????  HE NEVER STARTED MY APPOINTMENT!!!  She proceeds to ask me if I need anything, I tell her no, but that I am going to leave the door open because I am starting to become a little panicked in that little room.  I go back to my book and another HOUR passes.  By this time I do not know what to do.  I realize that most of you would have been long gone by now, but this doctor is an hour away, and  I had finally been able to keep my appointment.  The way our life is, you take what you can get when you can get it so I felt like I needed to try and see the doctor.  At 6:40, I wander back out to find the one lonely nurse and asked her again if she was certain the doctor was coming back…she called him and to make a long story short he arrived shortly there after.

So, what did you do this afternoon?  Me?  I sat in a little room wrapped up in a too small gown, trying to read as a distraction to my panic, laughing to myself that “this would only happen to me!”  It was after 8pm before I get out of there.  They did compensate me for my trouble and he was very apologetic…better than some of the doctors that Keyan sees who feel that their time is SO much more valuable that yours!  I am not lying when I say there is never a dull moment around here!

The county fair

Last weekend, the company that Paul works for had their company picnic at the county fair. They served a great lunch and than all seven of us had wristbands for unlimited rides at the fair. It was crazy! There is nothing like the “gravitron” to make you feel your age. I used to love that ride when I was a teenager, and Jamahl went on it al least 8 times, but the one time I joined him I thought I was going to loose my lunch! The kids all love the rides, especially Keyan. There is not a ride too fast, too high, too spinning, or too much of a drop for her. She puts her hands in the air and just laughs through the whole thing! It was a lot of fun to watch them all trying new things. In the middle of the day, a Hanna Montana impersonator gave a concert and our girls were in their glory. They had no idea that she wasn’t the real thing and when McKenzy said her face looked a little different, Jamahl told her she was just trying out some new things with her hair and make-up. What a great big brother not to tell the secret. Finally, after eight hours of rides, animals, fair food, concerts, and more rides, we called it a day. The kids were all crying about that fact that we had to leave! I think they would have ridden rides until the carnival closed…what a fun, full, family day.

WAM 2010

One of our favorite events of the year was this past Sunday. The Make-A-Wish foundation does a 3 day, 300 mile bike ride to raise money that goes towards granting “one true wish” to children with life threatening illnesses. This is the largest fundraiser for MAW in the United States and last I heard, the riders had raised over 1.5 million dollars!!! Absolutely amazing! The final day there is a celebration at the finish line with all types of fun things to do for the kids and it is basically one big party. We have been blessed by the MAW foundation over and over again, and if you haven’t read my blog posts about our wish trip, you can find most of it in October of 2008 and a final post in October of 2009. The trip was life changing for us as a family and the foundation is VERY dear to our hearts.

Once again,this year, Keyan was a wish hero for Team Craig. That means that they use her and her story as inspiration to ride and help them put a face to their fund raising efforts. At the end of the ride, Keyan meets them all and gives them each a medal (and a hug!) We met Team Craig last year at the Hero’s Hurrah and as you know from previous posts, they too have become very dear to our hearts. While Keyan is considered their “hero”, we firmly believe that these riders and their families are our heros. Team Craig rides not only in honor of Keyan but also in memorial to their son/brother Craig who began his journey in heaven a few years ago. It is an honor to know this family and has been a joy to get to know them over the last year. It made the day even that much better watching them cross the finish line and spending the day with the entire family was so much fun. It was great to celebrate with Sandy since this was the first time she did the entire race without “sagging”, and to laugh with Jason, who had only ever ridden 100 miles one other time this year! We shed tears with Mark and Debbie when we talked about the silent mile and looked at stars with Craig’s picture on them and watched in awe at Jeremy and Amy’s connection both on and off their bikes. It was fun to watch Justin tease the kids and admired John as he decided we could just carry Keyan and her wheelchair up the stairs and onto the medal stage. Caitlan and Tiffanie cracked me up with their illegal parking of the dotted van just in order to get good pictures with the riders and although Chad was a little late in arriving, the few snippets of conversation that we caught with him, was great. At the end of the day, as we piled into our van to head back home, Paul grabbed my hand and with tears in his eyes just said, “it was a good day, a very good day.” And that sums up the whole experience!

Cincinnati

I know that some of you are checking often for an update to our Cincinnati visit.  I am sorry it has taken a little while.  It was a quick trip with barely enough time to drive down, see the doctors, and drive back!  After much concern and debate about whether or not Keyan would remain healthy enough to take the trip, I was so relieved to pull into Paul’s aunt and uncles house early Wednesday evening with a happy and healthy little girl.  The trip went smoothly…thanks to a portable DVD player…and Keyan was so excited to be riding in the yellow bus. (We borrowed a hummer to make the trip and it happens to be bright yellow, so she thought it was a bus!)

Our appointments were on Thursday and Paul and I were both very anxious about what the doctors would say and what they would want to do.  We spent 4 hours at the TPN clinic, talking to doctors, nurses, residents, ect.  Just as in previous visits to Cincinnati Children's Hospital, everyone was very friendly, very detailed, very reassuring, and great with Keyan.  After hours of discussions and lots and lots of questions, we left learning the following.

~The doctors have asked us to turn her care over to them.  They have talked with our doctors here and everyone is on board with that happening.  This clinic sees only kids who are on TPN or who have weaned off of it.  It is their expertise.  The doctor told us that he is committed to doing his best to figure out why Keyan’s body won’t tolerate or accept food into her gut.  When we asked if they saw this type of thing often, he stated that it is very unusual for a child of her age to be dealing with this without a directly known cause. (obviously not what we were hoping to hear!)  He also said that small bowel transplant is just not a great option.  Ten years post transplant, there is only a 50% survival rate.  And, at this particular point, she is not  a candidate because she doesn’t have a diagnosis. 

~They have discontinued the medications we have been using to control the bacterial overgrowth in her gut.  Dr. Mezoff felt that it was a great plan, but one that was obviously not working, so he wanted to see her without it.  They also recommended stopping a medication we use for GI inflammation in the next week or so.  They are running TONS of lab work, did an abdominal x-ray to check the placement of her J-tube, and made some changes in her TPN.  All of this is coordinated through our doctors here.

  

~Most of you know that Keyan had gained 17npunds in the last 6 months or so and we have had a hard time getting anyone to do much about it here.  Dr. Mezoff is hopeing to not only stop the weight gain, but actually get her to loose weight!  This would make me so happy!  They lowered her calories, and she will only be getting her fats/lipids three days a week.  If they can be successful in getting some of the weight off…it will be a trip well worth our time.  I was thrilled to hear that they thought it was a problem.  I hate the extra weight that she has put on and have been shouting it from the rooftops only to be ignored or pacified with some minor changes.  This was one of the major things we were wanting addressed. 

~So, the plan for now is that they will see her back in the clinic in one month.  If she were to get sick before that, we will take her to DeVos until she stabilizes and than she would be transferred directly to Cincinnati.  They have assured us that now that we have an accepting physician, she would indeed be able to be transferred.  I am skeptical, but have to put some faith in them at this point.  If she were to stay healthy over the next month, than sometime after that, they would like to electively admit her inpatient for 2-3 weeks so that they can do further testing, procedures, work on condensing her TPN time, and be able to get ”down and dirty” in order to figure out the cause of her intestinal failure.

That leaves us feeling very overwhelmed.  I am so thankful to finally meet this team of doctors and have them meet and see Keyan.  I think that the changes they are putting in place are great ones, and their plan is right on for understanding Keyan.  Unfortunately, they have to basically start from scratch in order to maybe give us some answers.  Turning her care over to them is great in theory, but logistically just seems like a nightmare to me.  Choosing to admit her to the hospital, where she will be in isolation just about kills me.  You all know how I ache for some quality of life for her…this doesn’t necessarily feel like a lot of quality.  However, it seems as if we have no choice.  When I start to think about the logistics of traveling to Cincinnati more frequently, it makes my head spin.  Having Cincinnati involved means double the phone calls, double the paper work, lots of opinions, and a lot of navigating for me.  I feel like I am choosing Keyan over the other kids and that is a choice that doesn’t feel very good.  The school system is asking if she will be staring school or not right away in the fall…how am I to know?  I feel like I am trading her one life for four others.  I know that it seems overly dramatic, but these are decisions that just don’t have good answers.  We have to give Keyan a fighting chance, but it will not be easy.

The other nagging feeling I have is that Cincinnati has only ever seen her feeling good.  They have not had her in their hospital, spike a fever, go septic, and in a matter of hours need emergency intervention.  If you don’t see that part of Keyan’s life, you only see a portion of the puzzle.  Reading about it is not the same as living it.  It is not a matter of confidence, but rather a lack of understanding what she has been through, what we have tried, and how she responds.  I guess I have vented long enough.  We were hoping to come home with a clearer picture of Keyan’s future.  While we didn’t quite get that, it is good to have a plan, new eyes, a team who specializes in her uniqueness, and a little bit of hope.  For today, I am sticking with that.  I am going to try and put aside my worries about the logistics and deal with them as they come.  For now, I am glad to have my family back together and look forward to the last weeks of summer.   

Labs

Some of you who are on facebook already know this, but Keyan’s lab work from today did not come back looking good.  The doctors order labs every Monday and Thursday just to make sure she is getting the proper TPN and so that they can tweak the recipe if need be.  Today, her potassium was low as well as her white blood cells.  The could mean that she has an infection brewing.  It usually means she will be sick within 48 hours.  The biggest problem is that we have appointments on Thursday in Cincinnati.  We have been trying to get there for three years and she has been sick every time.  This time it is absolutely critical that we get there, and get there NOW!  We have gone thru all sorts of scenarios…playing out all different angles of the situation, and for now, we are just hanging tight, hoping that she doesn’t spike a fever.  Please pray that we make it down there and that it goes smoothly.  We are planning on leaving Wednesday morning and we need to stick to that plan.  The doctors are making some changes in her TPN and hopefully that helps stabilize her.I will update as things progress!

Loneliness

As I sit here after a busy Monday, I find that I can not stop thinking about this weekend.  I have tossed these thoughts around in my head since Friday night and finally decided to put my thoughts down on “paper”.  Friday night we were invited by Team Craig to join them at “The Piper” restaurant for dinner and than to hang out at the pool or go out on their boat.  They were in town to ride the Holland 100 as a warm up to the Wish-a-Mile 300 mile bike tour this coming weekend.  Team Craig consists of mostly “George’s”…members of the George family, a family that rides in honor of their son/brother whom they lost to a degenerative disease just a few years ago. We met this family a year ago at WAM, and have kept in touch with them ever since.  We had an instant connection that has spanned the distance between us, and our family looked forward to the party all week.  At the time I thought that we were so excited because we actually had plans on a Friday night….most Fridays are pizza nights at our house, with very few other plans.

We arrived at the restaurant to be greeted warmly by all of the George family as well as another family that the Georges invited.  Royer, Heather, Tyler, and Ryan make up that other special family and it was a privilege to get to know them and share experiences with another family who struggles with some of the same stuff we do.  After appetizers, salads, dinners, desserts, and LOTS of conversation, most of the adults went out on the boat and a few of the adults took all of the kids to the pool.  Lake Michigan was rough, but we had such a great time bonding over the waves.  Meanwhile, poor Debbie had to slip the pool guy some extra cash to keep the pool open for 11 very ready-to-swim children!  The night wound down with a few last minute snippets of sharing, lots of hugs and thank yous, and a few tears..both from the kids who were terrified of the mosquitoes in the car, and from myself, who at the time just felt like crying and couldn’t really put a finger on why.

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We got home so late and were all exhausted from the fun night…but I could not sleep.  My mind was busy and my heart was heavy.  I spent much of the night pondering my emotions and wrestling with the emotion that was staring my in the face…LONELINESS.  Why did spending an evening with friends leave me feeling so alone?  As I began to dig deeper into my soul, I realized a few things.  As a family, we don’t have many friends..is that because we have so many kids?  Is it because we have quadruplets, and for many years were in survival mode?  Is it because for much of the girls lives we have had to be so concerned about germs that we have been in a forced isolation?  Is it because we have a child who is medically complex and that scares a lot of people?  Or is totally something else? I used to think it was the quadruplet thing…who wants all those kids coming over to their house?  We certainly don’t get invited a whole lot of places!  Now, I think it is probably a combination of all of these things. The truth of the matter is that we even miss most family get togethers whether it is because Keyan can not travel overnight anywhere or she is sick, it just doesn’t work out.  I have made “internet friends…from message boards about trachs or multiple births.  And facebook has kept me more up to date on my friends from before the girls, but it is not the same.  You can live with those facts, tricking yourself into thinking everything is alright until it all comes tumbling at you after a night like we had.  A normal Friday night for most families..but one that for us was very unique.  These people embraced us with no questions asked.  They have suffered down some of the same paths we are on.  They are not put off by Keyan’s wheelchair, machines, quiet voice, or my constant ever present worrying watch over her.  There are few people in my life that could take Keyan to the hot tub and give me an hour to laugh with other women and catch my husbands eye knowing that he was feeling the same thing.  There was always someone offering to carry the suction bag, or the three other bags of swimming supplies.  My friends helped the girls change, played with Jamahl, gave out hugs to my kids, and allowed us to morph into their family for the evening instead of watching Paul and I scrambling around trying to keep up with the demands of our children.

Maybe it is because we aren’t connected with a church. Maybe it is because we have become a little bit socially awkward.  Maybe it is because Keyan and I spend more time away from home than here, or maybe it is because we have had to say “no” so many times, that people forget to ask anymore.  Maybe it is as simple as people just don’t know what to do with us. Likely, I will never know the answers to any of these questions, and that really is alright.  I got a chance to vent about it to Paul, and talked a little bit about it to my Dad, and after writing here, I will hopeful be done with it.  It is a strange feeling, to be surrounded by people all day long…my kids, therapists, doctors, delivery people, home nurses, you name it, but to realize the deep sense of loneliness.  Why does it work with the George Family?  They have lived it.  It is as simple as that.  And not only have they lived it but they have chosen to reach out to those of us at a different place in this crazy journey and give us a little piece of normalcy.  There is a lot of stress that comes along with having a child like Keyan, but for one night, it sure felt good to be just another family enjoying the company of some very special friends. 

Pool Party

For three years, Jamahl has been planning a pool party that we have never gotten around to having.  Every summer he talks and talks about it but we have never had the time or energy to do it.  A few weeks ago, while I was at the hospital with Keyan, my mom called to say they were choosing a date and sending out invitations…this party had to happen.  “More power to ya,” I thought, but I knew it was something that we needed to do.  So, over the course of the last month, Grammie and Jamahl sent out invitations, bought all of the supplies, planned games, and looked forward to the big day.  As yesterday approached, spirits were high as the kids kept checking the weather channel and the last minute squirt guns were purchased.  We ended up having seven of Jamahl’s classmates, plus him, and he even let his sisters join right in.  It was his choice whether his sisters could come or not, and not only did he let them stay, but he included them in the games, food, and all of the fun.  Keyan of course stayed inside due to the 11 other crazy kids in the pool, but she had fun hanging out one-on-one with Daddy and Poppie.  After an afternoon of games, pizza, pop, candy, and craziness, we all declared the party a success.  Thanks Mom, for making it happen!!  You are the best Grammie in the world.

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Boys and Girls Night

Several months ago, we bought tickets for Jamahl and Paul to see the Star Wars in Concert show.  Jamahl has been counting down the days, and even hours until the show.  In case you don’t know, Jamahl is a Star Wars fanatic…ask him anything about any of the movies and he can tell you more than you would ever care to know!  Our nurse Steve also went and from what I hear, they all had a great time.  Steve has most of the pictures, but he did send this one while they were there.  Jamahl told me that he got to see the real Chewbacca suit, three different kinds of storm troopers, C3POs suit, a Yoda puppet, and lots more.  The narrator for the show was the guy who played C3PO and Jamahl thought that was VERY cool.

So, while the boys were away, Grammie, Poppie, Mommy and the girls got dressed up and went downtown to a fancy restaurant for dinner.  The girls did so good, that Poppie stopped for ice cream afterwards.  We all practiced our good manners and trying new food.  I think overall, it was a successful night.

Quality

Today was a day full of adjustments for all of us.  It is interesting how the kids still go to my mom for everything despite the fact that I am sitting right there and poor Keyan is having a difficult time not being the only child.  Of course, it is just as hard for me trying to transition from sitting in a very quite little from for two months to the “chaos” of family life.  But, despite all of that, we had a great day and made sure to live it to the fullest.  Abagayle is camping overnight with one of our angels, Grandma Gretta, and Jamahl spent the evening with a friend, so that is why they are missing from some of the photos.

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I was determined to get Keyan in the pool and that we did.  We wrapped all of the IV connections in tegederm and we double bagged the backpack with all of her stuff in it.  She was so happy.  She would like to be in the water more, but with the central line, this is as good as it is going to get, but I do think that we did a pretty good job, if I do say so myself!  We had to deliver some medicine out to Abagayle at the beach, so we had dinner out there and went for a walk.  Keyan had so much fun maneuvering her wheelchair.  Look real close and you can see that my friend Debbie brought her some little gloves to use when she is pushing the chair by herself.  She loves them and thinks that they make her go even faster!  I realized today that although a lot has changed in the last three months, we are adapting to those changes and trying to embrace life. The days will not always be as carefree as today, but we will meet them all head on!

Home!

Keyan and I made it home yesterday afternoon!!!  We are both so excited.  She slept the whole way home, but when she got into the house, she immediately sat down in front of the doll house, pulled all of the pieces around her, and began playing.  It was so great to see.  She played there for quite awhile and than spent some time downstairs with Grammie and Poppie.  She is currently sitting in her bed surrounded by books and stuffed animals.  I think she is glad to be home!

In other exciting news, we finally heard back from Cincinnati and we have an appointment scheduled for July 22.  They are still hoping for a cancellation so that we can go next week, which would be the safer route, but we will aim for the 22nd if nothing else.  It will just be the one day, but we will see a couple of different doctors and spend most of the day in the clinic. We are working on freeing up both Paul and I to go and are clinging to the hope that they have some answers.  Now, we just need to keep her healthy until than! 

So, back into the swing of things, with some new meds, new IV meds, lots and lots of appointments to get to, but doing it all at home!  What a great feeling.