Thursday, December 12, 2013

It has almost been 2 months since I have updated.  I can't say that life has been perfect by any means, but we seem to have a lot less going on that seems news worthy.  Halloween, Thanksgiving, and Christmas are not what they used to be.  No matter how much I try to move on, I find myself reliving memories of the worst years of my life.  Halloween was when it all started.  Her first 2 Thanksgivings we spent inpatient.  Her first Christmas we were getting a central line put in and her first New Year's Eve I laid awake in a fold out couch thinking about the decision I had just made to put poison in her body that I didn't even think would work.  Last Christmas I was frantically booking flights and getting us packed to travel to Maryland for a clinical trial I had 3 days to prepare for that didn't work.

This Christmas seems to be a little less frantic.  Just to keep life interesting, I have procrastinated Christmas shopping like I do every year.  Kendall seems to want every toy she sees on tv, whether it is for a boy or a girl or if it is an infomercial.  She wants it "RIGHT NOW".  It is her world and we are just here to serve her needs.  It's exhausting but I challenge anyone else to discipline a child that is in constant pain and at a moments notice can go off into an hour long tantrum because she has a nail that is rough or her 10 month old brother is looking at her funny.

Ive increased her methadone 2 times in the past month.  It probably needs to be done again.  The girl is on enough pain and nerve medication to knock out an elephant, yet she functions.  It just goes to show how much her body needs just to cope with life.  I thank God everyday that we have such an awesome group of NP's and doc's on her palliative care team.

I gave up on the clinical trial that she has to swallow a pill for.  Then I noticed on a FB group that I'm on that there is a waiting list a mile long for kids to be on it.  Well, human want what everyone else we are back on for trying.  Unfortunately for Kendall it will be hell for her because I'm just going to have to do the caveman approach and force her to swallow it.  Screw the fluff of making her happy.  It's do or die now.  She doesn't have a choice.  Hopefully it's worth it.  I'm fully expecting it to set us back on any progression we have made in oral feeding but considering that is none, we don't have too far back to go.

Kendall is still loving school so much.  It breaks my heart after I pick her up at lunch time.  I think she holds it together so long at school and just crashes as soon as we get in the car.  It's meltdown mode until she goes down for a nap.  From what her teachers tell me, she rarely complains of pain while she is there.  Once we get home and I turn on her shows, it is nonstop back scratching, leg rubbing, and changing positions.  Some days she doesn't even want to sit up in her hippo chair that has always kept her comfortable.  I'm just glad she can function at school and is making friends with her classmates.  Lately, she has been coming out holding hands with one of the little boys everyday.  Cutest thing EVER.

As for the rest of us, we are doing well.  Braden is busy playing mind craft and going to basketball practice.  Tanner is a handful.  Braden was such a good baby, never got into anything.  Tanner just looks for trouble and loves to laugh when I tell him no.  By the 3rd, they are a little less stressful.  Maybe Kendall has taught me to be more laid back but I'm constantly thinking, "will it kill him?"  If the answer is no, then he's good.  He's already taking steps and crawls fast.  Here is what I had to buy Kendall to keep her safe.
Tanner doesn't realize that he is the one that is free.  He just holds on to the side and cries the entire time she is in it.  

Here are a few pictures from Halloween.  Kendall's costume ended up working out at the very last minute, thanks to some help from her speech and feeding teacher.

Hoping everyone has a safe and merry Christmas.  Thanks for all of the prayers.

Tuesday, October 22, 2013

Kendall has been doing wonderful in school.  It takes some convincing to get her out of her funk in the morning but once we are out the door, she is so happy to be going to school.  Yesterday we went on our first field trip together.  It was to the pumpkin patch.  I'm so grateful I was able to go with her and her class.

Medically, Kendall has been doing alright.  We have been free of kidney infections for awhile now.  I started a new medicine a few months ago that seems to be helping.  I have to flush her ureterostomies with a liquid antibiotic every day.  It is not an enjoyable experience for her but it seems to be doing the trick.  We have recently had to go up on her methadone even more than we did over the summer.  I think her pain has been increasing.  I can usually tell just by how grouchy she is.  Little kids can't always tell you what hurts and how bad so it tends to come out in angry outbursts.  Braden and I have had a few talks lately where I have tried to explain to him why his sister is screaming at him for no reason.  It's hard for him to understand but I think he's doing a good job at trying.

It has worn on my soul to have to watch her suffer.  No parent likes to watch their child in pain.  Even things like holding your baby down while she gets a shot, can wear on a parent.  I know I still have a hard time doing that with Tanner.  Daily I have to hear Kendall scream "ow ow ow mommy.  HELP!!!" and I just have to sit here helpless.  At times she doesn't even want me to touch her because of the pain.  It's just hard for all of us.  Luckily, we have a great team of doctors who try very hard to control her pain.  Right now we are struggling with sleepiness during the day because of her increase in pain meds.  There is never a perfect solution so we just have to make the best with what we can do for her.

Oral feeding progress is going slowwwww to say the least.  She is drinking much more fluids lately but still has little interest in taking bites.  Pill swallowing is also pretty stagnant.  I'm starting to lessen the importance of this clinical trial that she has the opportunity to participate in.  I don't want to be disappointed when it doesn't work out, so I'm just sort of ignoring that it is approaching.  I really don't want to have to shove a pill down her throat twice a day.

Here are a few pics or videos of our last few months.

Kendall's version of ABC's

What we learn at school

Painting our nails.  You can tell who was responsible for mine

Kendall's first field trip to the pumpkin patch

Our first trip in the wheelchair to the Children's Museum.  She actually stayed in it for the hour and a half we were there.  I was exhausted but not from this one....
 or this one...

but from this one!!

Who then redeemed himself the next day after looking like this...

Thank you everyone for the prayers and well wishes.  Sorry I have been bad about updating her website.

Saturday, February 23, 2013

We are Still Here!

Well it has been quite awhile since I have updated.  I have no excuses to give.  I mean we have moved and had a baby all within a month, but I'm not going to use that as an excuse.

Update 1
Welcome to our world Tanner Michael!!
Tanner was born on January 23rd at 12:08 am.  He weighed in at 7 lbs 6 oz.  
Tanner needed a few moments to outshine his sister so he decided to wrap his cord around his shoulders.  His heartbeat fell off the monitor for quite sometime.  I was rushed to the OR for an emergency c-section.  I knew it was bad when my doctor was yelling to everyone to run faster and no one would tell me if my baby was still alive.  Luckily, Tanner saved both of our lives because I ended up having a hole in my uterus and if he would have tolerated a normal delivery, who knows what would have happened to both of us.  Although it wasn't the ideal situation, Tanner is here and we are both healthy.  God sure knew the plans.
Tanner was named by Matt.  This is the first child I have given naming rights to Matt.  He had two names to pick from:)  Michael was chosen by Braden after our buddy Iron Man Michael Wanser.  If Tanner can have half of the courage and strength as Michael showed in his short life, he will be a lucky boy.  I already know that he has a little bit of Michael's sense of humor because he was laughing at only a few days old.

Update 2
Isn't this all about her anyways??

Kendall's life has changed by leaps and bounds over the past month.  In one week she welcomed a new brother, had to be away from me for the first time, moved, and had other people caring for her while I sat and watched.  
Overall, it was good for her, although quite a struggle.  She has since become very accepting of other people now.  She trusts much more than before.  Unfortunately, it took her quite a while to stop being mad at me.  She still tends to want Matt over me at this point.  I know it was hard for her to understand why I wasn't allowed to pick her up but I was carrying around a baby all day.  I'm sure she still sees herself as a baby and it was confusing why she was replaced.  
Right now we are struggling with daily meltdowns.  She gets upset about something or really nothing at all and it leads to about 30-40 minutes of extreme screaming, yelling, and sweating.  I'm trying to ignore the behavior for now because it really needs to disappear.  It has been good for teaching Tanner to sleep through chaos.  

This week we had a major boost in progress.  Kendall and I went to our feeding group class on Wednesday (we haven't been in 5 weeks).  She decided to take a few bites of food and actually chew and swallow them.  This is huge for us because she usually screams through the entire class.  Along with this, we returned her feeding pump this week.  She hasn't been hooked up to it for over a month so I figured it was time to said adios.  It was surreal to see it go.  I honestly thought we would never know a life without it.  Kendall is still on 100% tube feedings but instead of being delivered through a pump, I make them all in a blender and push them via syringe through her tube.  There is hope that one day I will be able to wean her off of these if she starts eating more by mouth.  SOMEDAY....

We have also had great progress with the wheelchair.  She asks to get in it each day.  Every time she is in it, she seems to enjoy it more and more.  For the first time she is getting to do things like come and watch me cook in the kitchen.  She is also able to go into her play room by herself and look at toys.  This is really a big deal for her.  Developmentally, she has never really learned what it is like to be able to go exactly where she wants.  Matt and I are her legs and we don't always want to do the same as her.

Coming up....we have another long day of MRI's at some point in March.  According to study protocol, they need to be the last week.  Depending on scheduling issues they may or may not be that week.  Then we will fly back to DC in April to re evaluate the medication.  I'm really not too optimistic that the medicine is even doing anything other than making her dread Monday nights (shot night).  Sometime I need a different kind of shot in order to give her her shot:)

And to end on even more cuteness....