May updates

Sorry for the long absence in updating on Kendall.  She has been doing pretty well.  We finished up her antibiotic for the nasty kidney infection and then waiting around for the cdiff to return.  I was pretty confident it had returned because she continues to vomit up some of her feeds.  I just got results back yesterday and it was negative.  So...no cdiff.  Now I have to figure out why she is still throwing up.  It makes it hard to have an active life when I have to have her lay flat on the floor for an hour and a half during her feeds.  If I pick her up too soon after getting them in, I have sticky formula all over my floor.  

Her sleep isn't much better.  We ended up getting her a twin bed for her room to try out.  It worked for one night and then we went back to being up 4-5 times a night with her.  Matt has started sleeping in there most nights and she seems to do better with him in bed with her.  

Here are a few pictures that I wanted to post.  They are a bit random but here ya go.

For those of you who don't quite understand the severity of Kendall's scoliosis...here is a picture to illustrate it.  It is also a good look at what is left of her scar.  You can also see the tumors in all of their glory, causing her back to look a little lumpy.

Kendall's hair is getting much longer.  I still have a difficult time figuring out what to do with it.  It seems to be growing on top but she is still bald on the sides.  Here is my first attempt at putting pigtails in her hair.  We've since gotten a little better at doing them.  I just love this pic of her.

Here is Kendall's new favorite thing to do in the backyard.  She loves to sit at the water table and splash around.  She is really rocking her new suit in this pic too.

Here is the icing on the cake.  Kendall is not allowed to go in the pool.  Last summer we went no where near it because she was so sick all summer.  This year I decided that just because she can't be completely in the water, doesn't mean she can't enjoy a little bit of it.  This is Kendall's first time in the pool.  I can dip her down as far as her diaper and that is it.  She loved to splash with her feet.

A few weeks ago, we went down to the NF Walk in Cincinnati.  I was asked to talk a little bit about Kendall.  We had a good time meeting other NF families and at the end we were surprised by an award that Kendall received.  She was given a trophy with her name on it for being the NF Hero of the year.  Here are a few pics of her enjoying her new trophy and medal.

Kendall has scans coming up on June 21st.  These are pretty big scans.  They will determine whether we can just sit and wait or whether we need to go to plan B.  I'm really hoping it is the first because there really is no plan B at this point.  

Please continue to pray for sleep for Kendall.  Also pray for success with physical therapy.  I have given to ok to start challenging her a little more.  This will probably be hard for me to watch so at times I'm going to have to leave the room to help her.  I really do feel like we are at a critical time in her development and she is starting to show me signs of being stronger in her arms.  I need to capitalize on this while we have the chance.  It won't be easy for either of us.  

Braden is done with school as of yesterday.  I'm hoping for time to enjoy the lazy days of summer with plenty of pool time and fun with friends.  Last summer was the opposite with frequent hospital trips and too much stress to even fathom right now.

Also, please remember to sign up to walk or run or consider donating to Kendall's Army for the NF Walk in Indy.  Here is the link.  

Love,

Steph

Stuff

Hi all.  Let me start by going back to Monday.  Kendall had her stitches out down in Cincinnati.  It was a long way to drive just to have stitches out, but well worth it.  Unfortunately, the skin had started to grow over some of the stitches and it was a painful procedure to get them out.  She hugged me around my neck and kept very still.  If something was painful, she would let me know by screaming and tightening her grip on me.  SHe is such a strong girl.

I noticed on Monday or Tuesday that her urine was smelling very funny again and it was getting dark.  She wasn't sleeping well at night so we had just increased some of her nerve medications.  I attributed the change in urine to a side effect of the medications.  By Thursday, the urine was stronger and I finally knew I had to cath her ureterostomies to get a sterile urine sample.  As much as I hate having to restrain my daughter so that I can shove a tube in her stomas, it is better than taking her in and having a stranger do it.  I do have to say that I trust my own sterile technique over a stranger's.  So anyways, we sent urine Thursday morning.

Meanwhile, she has continued to have a fever between 100 and 100.9.  She's also been very lethargic and zombie like.  Yesterday, I was ready to take her to the ER if she didn't perk up.  She must have gotten the memo because she did perk up for a few hours before bedtime.  She has been vomiting up most of her feeds but last night we were able to keep about 10 ounces down all through the night.

Ahhh...fast forward 3 hours from when I started this.  She's throwing up again.  The U/A came back and there is an infection, now just waiting to see which med will work against it.

The past week or so I've been questioning why I'm still writing this blog.  There comes a point where this becomes our life.  We have to end the crisis mode and just get used to reality.  I never in a million years would have guessed I'd have the guts to broadcast such personal information about my life to thousands of strangers across the world.  I guess for the most part, I've tried to make this blog about Kendall.  I've left out quite a bit that is "not caring bridge appropriate".  There is a life behind closed doors that does exist when you have a child with a chronic illness.  Sometimes I feel as if I'm being fake or misleading by remaining so positive on this blog, when at times I'm the least positive person in the world.  I've come to the conclusion though that this is Kendall's blog.  This is about her life, her treatment, her path.  I hope there is a day when Kendall will start writing on this same blog.  She will tell it from her own perspective.  Until then, my one and only purpose of writing this blog is to bring awareness through Kendall's journey about the horrible condition that is neurofibromatosis.  By doing so, I will keep a record of how much money Kendall's story has raised to fight NF.  I can't wait to tell her that last year Kendall's Army raised close to $16,000 for NF research.  

May is NF awareness month.  So here is me spreading awareness.  1 in every 3000 children are born with NF.  It could be any of yours that has it and you don't even know about it yet.  It can show up early or later in childhood.  Kendall's was a spontaneous mutation, meaning we don't have NF in our family.  50% of the time it is spontaneous.  When Kendall was suspected to have it, the oncologist told me that I better hope and pray that it is JUST cancer and not NF.  When it was confirmed to be NF, I had a doctor look me in the eyes and tell me there was nothing they could do to fix her.  I work in a hospital where people are having their hearts fixed after years of self inflicted abuse and this man was telling me that my perfect daughter would never be cured.  I did what any mom would do.  I found the Children's TUmor Foundation, became the Chapter Leader for Indiana, and planned my first NF Walk.  

Please help me raise money for research.  I am 100% confident in the Children's Tumor Foundation and the way they allocate funds as a charity.  Even if you just give a few dollars, it adds up fast.  Trust me, last year most of our fundraising came from all of you.  It was amazing!

Here is the link to Kendall's fundraising page.  If you are in the Indianapolis area, please consider signing up for the walk or 5K run.

www.ctf.kintera.org/nfwalkindy2012/kendall

Also, please pray that Kendall stays well enough to stay out of the hospital this weekend.  We have a busy weekend planned.  The first NF symposium at IU is tomorrow and I'm in charge of the food:)  Also I have to work tomorrow night.  

Love, 

Steph

And she's back!

Last night Kendall was back to her normal sleep, just up about 4 times.  Her little personality is 100% back.  Her voice is so cute because she is still a little hoarse.  It is probably left over from so much screaming plus the breathing tube during surgery.

She pushed up again this morning while watching cartoons.  I can't keep this girl down!  I'm not about to tell her no after months and months of trying to get her strong enough.

Here is a picture from last night that pretty much sums up our mealtime most nights.  Kendall's foot must always be on the table,   Braden has to always be in a picture, and someone put a Cheeto in my drink.

Have a great weekend.  Kendall and I go back down to Cincinnati on Monday to have stitches removed.  Please pray she tolerates it well.

Love,

Steph

On the mend

Last night was much better for Kendall and for us.  She was only up about 4 times.  She has also been more comfortable today.  At times I can even see her personality coming back out.  I'm still working on increasing her feeds during the day.  I'm stumped as to why she is still throwing them up.

We go back down to Cincinnati on Monday to have her stitches removed.  I haven't quite figured out how much I'm going to tell her neurosurgeon.  He will see her without her brace on during the appointment.  I haven't decided if I'm going to tell him that the brace has become something we put on the couch to keep the dog off or if I'm going to make it sound like she wears it all the time.  I have a few days to decide.

Today Kendall and I needed a shopping trip so we went shoe shopping.  She has been blessed with ridiculously small feet and it is impossible to find sandals that fit her.  Other than that, we have been trying to stay home as much as possible.  If she won't wear her brace, then I'm going to keep her laying flat as long as I can.  I'm sure it doesn't help that she is rolling and twisting all over the floor.  Forcing a toddler to keep her spine straight is just about impossible.

Thank you everyone for your prayers.  I think we may have figured out the dose of medication that is needed.  I think Kendall's surgery took some pressure off of nerves that went to her left leg.  This could be causing all kinds of new sensations, good and bad, in her left leg.  I have noticed that she is a little less sensitive to touch when I play with her foot.  

Shut the front door!!! As I'm typing this, my little squirt just rolled onto her stomach and pushed herself up with her arms.  Here I am talking about keeping her spine straight and she had to go and show me!  We have been working for over a year in therapy at pushing up an she's never been strong enough.  She just pushed up and held it for about 5 seconds and smiled at me then went back down.  Never a dull moment.

Love,

Steph

PS.  I've been working on getting her hair in pig tails for awhile.  Today was the day.  She is in the middle of flipping a wipe around, hence the funny face and white streak in the pic.