Time to introduce Vale Carter Mahon to the blog!

So I figured it was time to talk about Vale Carter Mahon.

I am due on November 4th 2011 but am hoping for an 11/11/11 baby!

We were just told yesterday that it is for SURE a boy so that's exciting!!! 

Four weeks ago at the ultra sound the tech guessed that it was a boy but now we know!

Vale is Jimmy's Great Grandfather's middle name and Carter is my Great Grandmother's maiden name.

I know these are terrible scan jobs for the ultra sounds (and those were the very first ones...) but I just don't have time to do it right at the moment! :)

We are so excited that Connor will have a playmate so close to his age!  They will be little bit more than 19 months apart.

Vale hasn't been as nice to his mommy as Connor was.  Connor's was an easy breezy pregnancy but I've been pretty sick with Vale.  

I figured out why I was throwing up... if I drank dark caffeinated beverages I would feel sick that night and throw up the next day.  I can have mountain dew no problem.  Chocolate, no problem... but Dr. Pepper, Coffee, Coke, etc and it's no bueno for me!

This child has also been good friends with my sciatic nerve... sometimes my right leg will just give out!  HA... we are trying to stay safe through this little hiccup.

All that to say though, it will be well worth any discomfort and sickness to have another little one!!!

So neat little story... 

There is a great OBGYN that most of the women as my church use and he goes to my church and is apparently a great guy.

For some reason, I didn't have any peace about going to him. 

It was all little reasons that were buggin me, nothing huge but I just didn't have any peace!

So finally I decided to search elsewhere and did some research and the place I found that I liked was UCLA medical center.

I didn't really have a reason for going there but I had peace so I went there.

The doctor is nice, it's fine... probably no better than if I'd gone to the other doc.

WELL... when all this happened with Connor's kidneys I wanted to get him into another specialist before we left but it was more difficult than I thought.

I did some research and the UCLA medical center has some of the best pediatric kidney care in the country.

When I called for information I told them I was already a patient in their system and they said because I was already a patient they could just add Connor to my account and they didn't need a referral and there didn't have to be any waiting time.

Isn't that awesome!  The Lord knew before hand that we would need to be set up as a family before hand at UCLA :)

Just thought I'd share! :)

Latest Nephrologist Appointment

Connor went to a new pediatric nephrologist today and it was a much better experience than the last time.

She works at UCLA research hospital and there was a resident and a nurse in the room with her at all times.

She was very good with Connor and he really liked her, even walking over to her and holding up his arms to be picked up.

They were very thorough, running new tests and getting a full family 'kidney' history from both sides.

She said she is very confident giving him a diagnosis of ADPKD (which was wonderful to hear)

She said if he had ARPKD he would also have a liver issue and a pancreatic issue, neither show up in his tests.

She said that if he gets lethargic and he has a noticeably distended belly, after taking him to the hospital, we should contact them right away.

She said the BUN levels for an infant are not out of normal range, as long as he's below 30 she's not concerned.

The phosphate crystals in his urine could be from an un-treated UTI, which are common in infant PKD patients but they are doing tests again to confirm that's what it was and nothing more.

She said there are three things we NEED to do for Connor as an infant with PKD:

1. Keep him hydrated.  Dehydration is horrible for his kidneys and will speed up the onset of the effects of PKD.

2. Do not let him get untreated UTI's.  She said that if he has a illness with a fever that requires a dr. visit make sure they take a urine sample to check for a UTI.  I need to assume every time, that fever could mean UTI and make them check.  (Connor has had a couple of odd spiking fevers in the last six months with no other symptoms and she said that absolutely could have been a UTI that his body was able to fight off.)

3. Monitor and watch his blood pressure.  It is common for PKD patients to get high blood pressure and in children they aren't checking for it and it many times goes untreated.  Hypertension kills more PKD patients than kidney failure.

She was very positive, VERY knowledgeable and very thorough.  The Lord knew exactly what I needed.  Every question I had she answered with competence and foreknowledge of whatever study, theory or concern I had.

We scheduled another appointment for 6 months from now and she wanted me to be sure it was AFTER I had baby number 2 so that she could do an ultra sound of that baby's kidney's too.  I hadn't even thought of that! :)

So we are going back at 10am on November 17th.

I am glad that our child (and future children) are being monitored and treated by a capable doctor.

The appointment this morning was a huge load off of my shoulders.  The Lord is so good!

I know He never stopped taking care of Connor or felt out of control and frustrated like I did and that is comforting to know.

Connor's definately a ONE year old...

Wonderful news! We got an appointment with a pediatric PKD specialist at the UCLA Research hospital in LA for tomorrow morning at 9am!  Whew Whoo!!  I'll keep you posted!

Till then, some updates on my buddy:

My little guy is moving around like crazy... he even tries to run.

He's a tough little cookie so he's not afraid to try new things.

 

He thinks he's a male model...

We took him to chic-a-fil and he had fun playing in the play place.  It took him a while to warm up and he never climbed up inside the apparatus but he still had fun.

I wish I'd gotten more pics of him wearing this... he was so cute.  The pants I put on him were too big and fell off OVER his shoes! HA

For mothers day we went to Buca di Beppo and had a good time!  Connor's like 'mom, I'm trying to eat my pasta... why you gotta be such a spaz?' :)

Here the little man has some engine trouble... just takin a peek under the hood :)

PKD info

For all you people who understand medical mumbo jumbo... :)  This is basically a flow chart of all the pathways being used to treat PKD.  If they can stop the things that they know increase PKD and hurt your kidneys maybe they can slow down, treat or prevent PKD.  In the bottom right corner is a chemical in your brain called Vasopressin and there have been studies to show that that chemical can cause kidney swelling.  Caffeine and Alcohol increase this chemical in your brain whereas water dilutes it's effect on your kidneys.  That is the reason they say Jimmy needs to drink 3 liters of water a day.

Something to lighten the mood

 This video needs to some background or you are going to think we are cruel.

Connor's favorite toy at the moment is a green ball that his cousin Brennan gave him for his birthday.

He loves it when we hit him in the head with it... he laughs and laughs!

We've hit him from the balcony, across the room, from 2 inches away... doesn't matter... he loves that game.

Well he loves that game unless he's trying to do something else and it's distracting... 

So, as cruel as this video looks it's not.  It's actually REALLY funny.

I can't watch it without laughing and I enjoy watching it over and over... call me sick but it's just great! 

Enjoy! :)

Connor NOT wanting to play! from Courtney Mahon on Vimeo.

Update on Connor's Appointment Today

We went to a pediatric neuphrologist today that we were referred to by our pediatrician (because she was in the same medical group).

We didn't really get the answers we were looking for.

There were no tests run, no future tests scheduled and a lot of assumptions and guessing.

We are going to seek a second console to get some answers.

Here are the things we need to know:

We would like to be SURE that Connor has ADPKD and not some other form or some other problem.  A blood test can confirm this for us.

We'd like to know what we can do for Connor in his diet to potentially prolong his kidney function and slow the development of cysts.

We would like to know what caused the elevated BUN levels in his blood and the phosphate crystals in his urine.

We would like to know approximately how much water Connor should be drinking as an infant and someone with kidney disease to keep them healthy.

We would like to make sure that he is not experiencing rapid cyst growth, so get another ultra sound to make sure there are not more.

The doctor we saw today did not confirm any of this for us, which was very disappointing.

On a positive note, if there had been something urgent in his blood work that would imply imminent kidney failure, I assume she would have been more attentive so that's good.

Also she told us that 3% of the population have a cyst on their kidney from birth and it never causes them problems.

We are hoping for the best but looking for more answers.

A little more info

So a little more about PKD:

Both Jimmy and Connor have ADPKD which is the genetically inherited dominant form of the disease.

I have read that the earlier it shows up, the worse it potentially can be but then again technology is making it easier to detect earlier.

They have PKD1 which is located on chromosome 16 so, typically they will have to have a transplant before the age of 55.

Update on Connor:

We got a call this morning that Connor's blood work came back abnormal and he is being referred to a pediatric neuphrologist.

His creatinine level was .25 ,which he said is normal in a child his age (.2-.4) but his BUN was slightly elevated.  Normal range is between 8 and 18 for a child Connor's age and size and his number was 24.

Below is a link to webMD where they explain what the BUN number is:

http://www.webmd.com/a-to-z-guides/blood-urea-nitrogen

Our doctor wants us to see the neuphrologist before we leave for NC so we'll have the apt in the next couple of weeks.

 In other news:

 I am going to a seminar tomorrow with two neuphrologists and members of the PKD Foundation to learn more about the disease and see if I can help with the PKD walk they are going to be having in October.

http://www.pkdcure.org/

Polycystic Kidney Disease

So no pictures on this post... 

We got a call today from the doctor to inform us that Connor has a cyst on his right kidney, meaning that, like his daddy, he has polycystic kidney disease (PKD).

As a mama this broke my heart.

No mother wants to hear that her son has a disease of any kind.

This is not the kind of thing that requires immediate drastic action.  He will slowly get more and more cysts on his kidneys until one day, hopefully late in adulthood, his kidneys will fail and he will need a transplant.

We knew Jimmy had it and that was one of the reasons we wanted to have children early so that when he requires a transplant, we will have children old enough to help out.

It's different though when it's your CHILD that has the sickness.  I'm his mommy.  I'm suppose to protect him from all bad and harm and I can't.

It's different to me with Jimmy.  He's my big strong husband and we are a team.  I am ready to go through the bad with him, I've accepted that.  Not with Connor.

I know that pain in the future for my baby is inevitable but it hurts to know what kind of pain.

Dialysis, transplant, anti-rejection meds, possible rejection, pain, side effects... the list goes on.

Polycystic kidney disease can also effect him in other ways.  

It is likely he will have high blood pressure and could have cysts on other major organs such as his brain, liver and heart.

There is currently no mainstream way to treat it, basically just wait for kidney failure.

All that to say, I tell myself it could be MUCH worse!  He could have something that is imminently fatal or painful for him his whole life.

Also, none of this takes God by surprise.  He formed Connor in my womb and knew before we had even thought of making Connor that he would exist and that he would have PKD.

It is not my job to tell God the best way to use my son.  Connor belongs to Him and if He wants to glorify himself through Connor's sickness then it is my job to be faithful through that.

I'm not saying it will be easy or I will like it but I will do my best to have a good attitude and remember that this life is not about me or Jimmy or Connor.  It's about God and his glory.

So where does that leave us now.

Well we go later this week for a urine analysis and blood work to make sure his kidneys are currently functioning properly.

I have written an email to a doctor doing infant research on PKD to see if he has any tips for us.

It means Connor, like his daddy, needs to drink lots and lots of water. :)  Yeah for going through dozens of diapers!!! :)

And it also means that we love our little boy just a little bit more than we did before because every family trial brings us a little closer together.

Thanks for listening to my rantings.  This post was probably more for me than anyone reading.

My little walking man!

Sorry this is sideways!

He does this screaming thing when he wants something, mostly when he wants me to hold him and I'm walking away... :)

He's a funny little guy! :)

Connor walking... and screaming :) from Courtney Mahon on Vimeo.

This just makes me smile!

He loves to giggle and be tickled! :)  And when you say 'Yeah Connor!' he always claps for himself!  HAHA it's too cute!

Connor's giggle from Courtney Mahon on Vimeo.

Connor's Travels!

We went to Chuck E Cheese on Connor's first birthday and I just got around to scanning this.  We are very blessed!

So I was thinking about all the places that my little midget has been in his first year.  He has traveled A LOT!!!  These are all the states and countries that he has been in, on the ground, not just in a plane in his first year!!!  He's quite the little traveling man!

North Carolina

South Carolina

West Virginia

Virginia

Washington DC

Georgia

Maryland

Pennsylvania

New York

Ohio

Kentucky

Michigan

Alabama

Mississippi

Tennessee

Arkansas

Texas

Oklahoma

New Mexico

Arizona

Nevada

California

Canada

Have a great week!