Oh The Craziness…

This weekend was jam-packed with action and fun for us!  First we went to our little cousin Peyton’s first Birthday party.  No pictures but the kids had fun celebrating with him.  Next we headed to The Matteson’s for Jaxon’s 1st Birthday!

I really don’t know how this little guy turned a whole year old already, but it happened right before our eyes!  Nicki hosted an awesome 49ers party and we all had a blast. 

 

We were out pretty late that evening, but there was no time to rest the next day because we had even more fun things to do!  We headed over to the highschool to see Daddy and all the other bikes that rode in the Frazier-Mason Memorial Ride.  I love my view looking down at these two in their cool ride:

And although it made me nervous, I liked the view of watching these two of my favorite boys…my husband and my brother…riding to our next destination.

Yes I was snapping pictures in the car…I was bored because these two were trying to catch up on sleep so I had no one to talk to!

Wow, safety first, Mother of the year over here, I’m totally telling on myself with this picture.  Okay moving on…

Our next stop was to Carter’s Birthday party!  Of course I didn’t get any pictures of the Birthday boy, but the kids always have fun playing over there!

We had so much fun partying it up all weekend, but then it was back to the serious stuff on Monday!

Monday afternoon we headed to Richmond for Ryder’s routine kidney check-up.  They took a sonogram of his bladder before and after going potty, they showed me on the pictures how thick and muscular his bladder wall is…this is a residual affect from his blockage prior to birth.  The sonogram of his kidneys came back great as he didn’t see any dilation at all!  So basically his kidney’s are healing perfectly and his bladder issue is something he will live with and learn to control.  He is going to have the ability to hold his pee for a long time and then not really feel the sensation of completely emptying.  Right now he tells me pretty frequently that he has to go, so it’s like he only lets enough out to where he doesn’t feel it anymore, so it fills up a lot sooner and he has to go again.  His kidney doctor was happy to hear that and said it’s better for him to go a little bit a lot than to hold it for a long time because that will give his kidney’s a chance to resort back to what they know and start to reflux again.  He said we’re at a crossroads right now, everything looks so great and could be on a great path to no issues from here on out, but we have to pay close attention for any unexplained fevers or bad smelling urine because now that Ryder has a choice on whether he’s going to go or hold it…it could mean trouble.  He said “I see he has some contrary in him, so let’s hope he doesn’t start to purposely hold his pee and not go”…haha yeah I’d say he has some contrary in him!

What’s today, Tuesday?  Losing track here.  Today Ryder had 2 back-to-back therapy appointments scheduled, OT and then PT.  Just as I was getting ready to leave work to go get him I got a call from Nana that Ryder’s cast had fallen off!!  I called Miss Abby and she rearranged her schedule so that she could put a new one on immediately.  This led to the “Day 1 of casting” emotions all over again, so it has been an interesting evening.  I know he’ll wake up tomorrow in good spirits though and we’ll just keep on moving…

There’s never a dull moment! 

Dr. Appointments & A Surprise

Ryder’s first doctor appointment yesterday was to see his Kidney Doctor.  I prepped him in the car, telling him that the nurse would have to use a wand to look at both of his kidneys and we’d be able to see them on the computer screen.  To which he responded “I hope she doesn’t put a magic spell on me with her wand!”  He was totally fine with her doing the sonogram, but I forgot to mention that she would have to look at his bladder too.  So after she checked out both kidney’s, she moved the wand around front and Ryder said “Mom, I have another kidney you didn’t even know about!!”  He can always find ways to make us laugh!

His Kidney Doctor said that things look the same.  He still has some dilation and some pockets of fluid in his kidneys, but as long as things don’t ever look worse, he’s happy, which makes us happy!  We talked about potty training and how well Ryder’s doing with telling us when he has to go, but that we aren’t able to put underwear on him because even though he goes potty he will still be wet 15 minutes later.  Since we could see that his bladder was full on the sonogram, his Dr. convinced him to pee in a cup (all it took was bribery with a lollipop and a sticker!), so he was able to see that Ryder has control over when he goes and when he stops.  Then he did another sonogram, and sure enough his bladder wasn’t emptied.  So he’s basically just going pee enough to not feel the sensation of having to pee anymore and then stopping.  Because his bladder is so muscular, he can then just hold the rest in.  If this continues, there’s a test they’ll have to do to insert die into his bladder and watch and measure his bladder function…which he’ll have to be put to sleep for, blah.  BUT he said right now it’s too soon to make that call, this could still be normal signs of potty training when kids learn how to use that muscle.  So we’ll see how he’s doing at his next check-up in 6 months. 

Onto the next appointment, the eye doctor.  I gave Ryder the pep talk about all the tests the eye doctor would probably ask him to do, but this time I forgot to mention the eye drops…until we got in the appointment and I asked “will Ryder have to get drops this time?”  Wrong thing to say.  The Doctor said he wasn’t sure yet, he’d have to check a few things first.  He started shining objects onto the screen and asking Ryder, what do you see?  Ryder would say “a birthday cake, don’t put drops in my eyes.” “a cow, don’t put drops in my eyes”.  Thank goodness he didn’t have to get the drops.  For a refresher, the whole reason we have to follow up with an Ophthalmologist is because Ryder has a nerve in his brain that is being pinched and isn’t allowing his left eye to look all the way to the left, so he compensates by turning his head and focusing on things to his left with his right eye.  This is called VI Cranial Nerve Palsy.  Anyway, the Doctor said he is actually turning his head slightly less than he was last year which is a great sign that he’s getting better control over his eye.  We follow up again in one year.  If it doesn’t correct itself, this too will require surgery…so we’re praying for no surgery, obviously! 

I’m seriously about to put his Urologist, his Ophthalmologist, and his Physiatrist all in a room together and give them one chance to do whatever they have to do.  I’m so tired of hearing he’ll have to be put to sleep for this or for that, it makes me want to throw up even hearing about the possibility of him having to be put to sleep any more times for anything else.  Obviously we want what’s best for Ryder so we’ll continue to do what we have to do, but hopefully it ends up with less sedation and more of his body healing itself!  God has done amazing things for Ryder thus far, so we know that regardless he is safe in God’s care! 

So Daddy promised Ryder that if he was good at both appointments, we would take him to the Bass Pro Shop.  Is it normal that my 2 year old actually got excited and looked forward to this allllll day??  He was SUCH a good boy at his appointments and so cooperative, so of course you know where we went.  It made his whole day, he got to drive boats:

And 4-wheelers and golf carts and side-by-sides, oh this boy was in riding heaven!

But the REAL surprise came when we saw a jolly old man with long white hair, and a long white beard walking across the parking lot into the store.  I jokingly said “look there’s Santa Clause” before reading his shirt that said “ho-ho-ho”.  Then we realized it really WAS Santa, before he was all Santa’d up.  Ryder was on a mission, he wanted to see Santa and tell him what he wanted for Christmas!  This was so funny to me because we didn’t even mention Santa to Ryder last year, and even though we planned on joining in on all the hype this year, we hadn’t started talking about him yet.  But who needs us!  Ryder knew exactly what he needed to do without any coaching from us.  We stalled to give Santa a little time to become Santa, then made our way over to his workshop.  It was mid-day so we were pretty much the only one’s there.  Ryder ran as fast as he could down the long red aisle until he finally made it to Santa and hopped on his lap.  Santa said “what would the little lady like for Christmas?”  YES!  Even with a MOHAWK hat on, a shirt that said “Daddy’s Best Friend”, baggy jeans, and Timberland boots….LADY!  “It’s a BOY” I yelled from the sidelines (I have to make sure he gets on the right naughty or nice list, we don’t want Santa to show up with Barbies now do we?!)  Ryder ignored the lady comment because he had better things to talk about “I want a boat!!” Santa said “Oh do you want to go fishing?”  Ryder said “Ummm no, I just want to go for a ride on my new boat.  Okay? thanks!” 

2011 Kidney Walk

Today was a beautiful day for the Kidney Walk!  Team Ryder gathered to walk in support of the National Kidney Foundation, and as always we had fun for a good cause!

 

 

 

    

 

Thanks to everyone who joined or donated or both!  We had another fun successful year :)

Kidney Walk 2011

It’s that time again!  Actually, it’s PAST that time…we’re usually deep into getting our team together and raising money by now, but I think we have a pretty good excuse for getting a late start, right?!  With that said, who’s joining/donating to support Team Ryder this year??  Everyone…right?!  We’ve got to get a move on!

This is our THIRD year participating in the National Kidney Foundations Kidney Walk and you all know how near and dear this foundation is to us.  Each year our team gets a little bigger and we are able to raise a little more money, so I’m really excited to see what we can do this year! 

Each year that passes is a year further away from all of the complications we faced with Ryder’s kidneys.  Another year we get to cherish with our sweet boy, not even being able to imagine what life would have been like without him.  And another year we all get to rally together in support of the NKF to show our appreciation for all that they do!

Nothing puts into perspective how much things change in a year like looking at these from the past 2 years:

 

The walk will be held on Sunday, November 6th at 1:00 in Richmond, VA.  You can go to http://walk.kidney.org/goto/teamryder to join or donate!  Thank you all so much for supporting us each year, I hope you know how much it means to us!!

Lets go Team Ryder :)

Doctor Appointments

More Dr. Appt’s to talk about…Imagine that!

First, Ryder had a check up with his Kidney Doctor last week that I haven’t mentioned yet.  They did a sonogram of his kidneys and bladder which he sat completely still for and didn’t even cry!  What a big boy he was!  I had been telling him about it the day before and on the way there, so he was prepared and handled it like a champ.  I told him “Just watch the TV and you’ll be able to see pictures of your kidneys” and he said “Dat’s not a TV momma, Dat’s a computa!”  Oh, Excuse me!  The Doctor reviewed the images and said that Ryder’s body is doing exactly what he wants it to do every time.  He said there are still pockets of fluid inside the damaged kidney that he measures to make sure are getting smaller, which they are, and he measures the kidneys to make sure they are getting bigger, which they are!  We go back in 6 months for another follow up.

I talked to Ryder’s Pediatrician on the phone this week.  Just as I was recovering from the sadness of finding out Miss Erin was leaving, I find out his Pediatrician is leaving at the end of June!  We love her so much, I just can’t even get over it, she has been such a voice of reason for me in all of these decisions I’ve had to make from Day 1 with Ryder’s care.  He’s her little buddy and her name gets mentioned quite often in our house, mainly when someone is stalling at bed time.  I usually hear over the monitor “Momma….Mommma come see what’s da matta!”  What is the matter Ryder??  “Ryder doesn’t feel good, Ryder needs to go see Dr. Cray!”  What hurts?? “My tongue! (or whatever body part he has decided hurts that day).”  I don’t even know how to start telling him that all these people are not going to be his people anymore! 

Today we got to check in on Maisy and see how the baby girl is doing.  She’s growing!  A lot!  She now weighs 6 pounds 4 ounces!  Her abdomen was measuring ahead of schedule, but hopefully that’s stemming from nothing more than her being a big baby.  I begged asked nicely for a new picture, and the sweet sonogram tech tried really hard to get me one, which resulted in me laying on my side with her jamming the wand into my hip bone aiming down to try to get a good angle of her face.  It’s really hard at this point because she’s so low and so squished in there!  But here is what we got (sorry it’s kinda creepy how there is a reflection of her face, I promise she doesn’t have 2 heads!)

 

After the sono it was time to go see my OB for my regular check-up.  Which ended in more tears.  Gosh.  I am either A) over emotional right now, B) a big baby, C) struggling with major attachment issues, OR D) ALL OF THE ABOVE!  Obviously the answer is D!  Here’s the run down – I have been with this doctor since I was pregnant with Ryder.  The day Ryder was born I was sent to a new hospital (where Ryder’s doctors were) to be delivered by a new doctor.  I was so sad that my Doctor wasn’t going to be the one delivering me.  Fast forward to this pregnancy, everything is going great, I’m on schedule for my doctor to do my c-section and thennnn find out he has to leave the country that day.  We moved the date back 2 days to accommodate only to find out today that the Perinatologist will not approve the new date because it is prior to 39 weeks and not medically necessary.  Nice!  So now, I have no date and no doctor.  There are 3 other doctors available in the practice (who I have never met), he wants me to think about scheduling with one of them for the rest of my pregnancy.  The last thing I want to do this close to the end is start seeing a new doctor.  period.

ANYWAY I gained 2 pounds, bringing me to a total of 21 pounds.  Blood pressure is good, no swelling, Maisy has a nice strong heartbeat.  I’m very thankful for how healthy she is and ready to bring her into this world…maybe she’ll come early on her own and none of the above will even matter! *saying prayers*

2010 Kidney Walk!

Wow, what a great time we had today!  First of all, we have been talking to Ryder about the Kidney Walk and about Team Ryder all week to get him pumped up.  Of course he repeats everything we say so when he woke up this morning he told me “Tidney Walk here!”  He remembered that it was today and was ready for it as soon as he woke up!

We had an amazing turnout!  Over 50 people showed up in their Team Ryder gear.  Thank you SO much to everyone who came out to support us and the National Kidney Foundation.  It really means a lot to be surrounded by such a great group of friends and family!

Team Ryder is so awesome!  So far we have raised a total of $2,477.00!!!  That doesn’t include the cash donations we turned in today.  I think it’s safe to say that we well surpassed our $2,000 goal!  Thanks to everyone who donated, you really helped make a difference.  The Kidney Foundation actually surpassed their $80,000 goal which for them means they will have funds to do things above and beyond what they already offer…more grants for kidney patients, more kidney disease testing sites, more money to go to research…BIG things. 

Since we were the Honorary Family at the walk this year, they announced us and told Ryder’s story, then we got to lead the walk.  Here are some random pictures of our walkers:

 

   

   

Ryder had a blast riding on his Daddy’s shoulders during the whole walk!

 

He was so adorable in his Team Ryder gear!

I hope that when he gets older he realizes how very special he is, what an inspiration he is to others, and that without him, there would be no Team Ryder!