Let the Fundraising Begin

It's been a while and so much has happened. Chris, Henry and I took a much needed vacation to San Diego and attended the PKD national convention. There was so much information and so many great people. It was inspiring, scary, emotional and so many more things all wrapped up into one. I have lots to talk about and share but am saving that for another day.

Henry turned 1 on August 20th!! The fact that he hit that milestone is so amazing to me. I remember when Henry was born reading online how if a baby survives the first year of life with ARPKD that their chance of survival increases. So for Henry to hit that milestone just meant so much to us.

We've been busy getting all the one year testing done, so lots of visits with the pediatrician, nephrologist, dietician, pulmonologist and lots of tests like echo cardiograms, ultrasounds and lung capacity tests.

To top all this off I finally got around to setting up our PKD walk page here http://www.pkdcure.org/Henry. Our goal is to raise $5,000 before the walk on September 25th. So check out our page, spread the word, sign up to walk and donate if you can. All the money our team raises goes directly to ARPKD studies.

I'll end the blog post with a little snipit of Henry's one year birthday invite that I designed. His party was so much fun. He thoroughly enjoyed himself and his monkey cake.

A Mother's Love

So for whatever reason I have been a teary eyed sap lately. With Henry's first birthday coming up (August 20th) I just keep finding myself wondering where the year went and being continually amazed by the little man he is becoming. He just started walking yesterday (yea I know he's one determined boy) and I still am not used to it. I took him to Little Bear today, which is a big area for kids under 5 with toys and climbing structures. (On a side note this place is great because I can sit, relax and watch Henry enjoy himself. They have snacks, coffee and free wifi too!)

So I'm sitting down and watching Henry walking around about 30 feet away from me. All of a sudden my eyes welled up with tears and I had that moment where your heart swells up with love and you feel like the proudest and luckiest mom in the world. My son is not the first kid to walk at 11 months old but none the less I am in awe and in love. He keeps me on my toes and regardless of how little sleep he got the night before he always wakes up with a smile on his face, ready to conquer the day.

People always told me how a child will change your life. To be honest I didn't believe them. They told me you will never know love like you do for your child. I just thought "well duh your supposed to love your child." Yet today I experienced that feeling, the one they all were talking about. A fill your heart up, bring you to tears, smile from ear to ear, big squeeze, super kiss kinda love that only a mother could know.

Finding your voice

So this post isn't about my voice, it's about Jennifer Lawler's. Via Facebook I stumbled upon this blog entry For Jessica. It's long and gut wrenching and if you have a sick child it will pull at your heart strings and solidify every decision you have ever made in your child's life.

I've spent the last month not blogging (obviously) and really engulfing myself in other parts of my life. I conveniently 'forgot' about Henry's disease and was enjoying not worrying about it. For those of you in the ARPKD world you know exactly what I mean. Where you go through fazes of accepting the disease, wanting to conquer it, hide from it, destroy it or just plain forget about it for the day. However this blog post made by Jennifer reminded me of everything Henry has been through and how despite how normal I try to be our normal just isn't normal.

So I am recommitting to sharing more of my life, reconquering ARPKD and re-finding my voice. What I took away from the post For Jessica was that tomorrow isn't promised. That it's okay to do things your way, with your child and not care what anyone else says (as lawler says screw them). Unless you have almost lost a child, and have traveled a road where your child's health isn't guaranteed than your comments or advice unfortunately don't hold their weight in gold.

Regardless of what anyone says I will always squeeze my son tighter, I will always let him live a little more freer. I'll let him do whatever makes him happy, I'll let him sleep in bed with me as long as he likes. I'll always look at him and smile at how he's grown and I'll always shed a tear when I think of how far he's come and how much further he still has to go. No matter what happens in my day to day life there is always that part of me that remembers almost losing my son and a part of me that fears the day when his kidneys will stop working.

So with teary eyes and a heavy heart I will end this post and start my nightly routine where I give Henry his blood pressure medicine, gently stroke his hair, fix the blanket he has kicked off his legs, spend a moment staring at him sleeping so sweetly, take a deep breath and smile.

Just roll with it

Oh I have had quite the week. Little man had this cough that was no big deal until Monday morning where it turned into a wheezing. I took him to the pediatrician and he gave him a nebulizer treatment and cleared him to go home. Not even 4 hours later he was really struggling to breath. He was showing all the signs of distress I was trained to notice when we were in the NICU. I could see his ribs when he breathed, his stomach was indenting under his lungs, his nostrils were flaring, he was head bobbing in his sleep and his breathing was strained and shallow.

I scooped him up and headed to the ER. With Henry you never know how his lungs are going to react. Once we were in the ER he couldn't keep his oxygen saturation up or his breathing under control so he was admitted to the hospital at midnight.

Surprisingly I just rolled with it. I think I kept my cool and took it as it came. I could have freaked out or melted down and I'll admit I shed a tear or two in the car on the way home to get Henry's medications. Overly though I know Henry's been through a lot worse and this little blip was a cake walk for him. My child of course took it in stride. From all the steroids and nebulizer treatments you would think someone had slipped the kid speed. He was bouncing off the walls. Literally at 4 am we were doing laps around the nurses station.

The one thing Henry has taught me is to keep smiling even when it's tough. Sure he was a little clingy and wasn't feeling 100% but he never lets anything stop him. He was jumping up in down in his crib and making all the nurses laugh despite his breathing issues. Apparantly someone forgot to tell Henry he was sick and should rest.

Thankfully it was a short stay and we're back home now and doing nebulizer treatments every 4 hours around the clock coupled with steroids. So sleep isn't quite happening, for me at least. We'll be having lots of doctor visits coming up now as well. Back to the pediatrician, then to his lung doctor and a back to the nephrologist to make sure the albuterol isn't affecting his blood pressure medication.

Another day, another issue, another lesson, another hurdle. It never ends but the one thing I've learned is to just roll with it because I know it could be worse.

Living

Sometimes you see something or hear something that reminds you to live. A few minutes ago I was stopped in my tracks and reminded how fragile and unpredictable life can be. I know first hand how things can change for the worse in a split second. I would like to think that I live each day appreciating everything, cherishing every moment and taking it all in stride.

The reality is I don't. Yet it is moments like these where I see tragedy and am reminded all too clearly how precious life really is. So tonight I vow to not complain any longer that Henry doesn't sleep through the night, to not roll my eyes as he throws a temper tantrum because he wants me to hold his hands while he walks. I vow to live life a little more passionately and spend a little more time nurturing my marriage. I vow to try my hardest to appreciate everything I have because it was not too long ago that it was all almost taken away from me.

There was a time where there was nothing more exciting to me then seeing henry open his eyes. To see him smile. To see him grasp my pinkie. Every little thing he did was monumental to us. At times now it's hard to really appreciate and enjoy the temper tantrums, messes, spit up, diaper changes and sleepless nights when your in the thick of it. Tonight I was reminded how lucky I am to have a happy, healthy and vivacious boy.

"Enjoy the little things in life, for one day you may look back and realize they were the big things"

- Anonymous

Milestones

With Henry's birthday coming up in August I'm already starting to think of places, decorations, invitations and everything else that goes along with planning a huge birthday bash. I'm making it a big deal and inviting lots of people because to me Henry making it to one year is a miracle and something to celebrate. Which brings me to the title - milestones.

There was a time not that long ago where I wasn't sure Henry would hit all his milestones. When Henry was in the NICU and was finally stabilized we were told that there was a good possibility Henry had suffered some brain damage. They had no way of knowing how long he was deprived of oxygen or how having oxygen levels at 60% or below for an extended period of time would effect him.

I remember our favorite NICU nurse talking to me about what our options were and having early intervention come to the house once Henry came home. I never had to call early intervention.

Never in a million years would I have guessed that Henry would hit all of his milestones and be slightly advanced. His motor skills are good, his coordination is on point, his vocabulary (or sound making) is on target, he is copying everything we do and starting to walk. That doesn't mean that at some point once Henry is talking or starting school that something won't come up but for now we're ok. In the meantime I am just going to take each day as it comes and appreciate every milestone along the way.

New Site

Finally I have the new site up and running. I am so excited to have this new forum and blog to share my stories and experiences with ARPKD. So feel free to poke around and check back because there are more updates and information to come.

My son Henry will still make his way into this blog but for the most part I'm going to be blogging about ARPKD from a mom's perspective. My ultimate goal is to help raise awareness and further reach out to moms and dads in the ARPKD community.

So I hope you enjoy this blog and take the ARPKD journey with me. Here's to loving, laughing, learning and living!