Thursday, September 27, 2012

The Boston PKD Walk

Life has gotten a little crazy lately. We've had this cold that traveled through the house and landed on Olivia (our 2 month old). Needless to say we spent a day in the ER and thankfully are all on the mend.

Throughout all of this we still managed to make it to the boston PKD walk and had a blast. So far our team has raised $3,275. I have to give all of the credit to my husband, Chris. With the new baby I handed all of the fundraising. t-shirt stuff and walk organizing to him this year and he did an amazing job.

When I get a chance I'll upload some pictures from the walk that I took but we did get a team picture done by the photographer at the event. Here we are:

Henry is the one in the gray shirt in the center (the kid who is not looking at the The morning started out a little rainy and gloomy but by the time the walk started the sun came out and we all had a few laughs and were able to walk for a great cause.

Thursday, September 6, 2012

I Still would have chosen you

One thing I love about social media is that often I stumble across something unexpected that moves me. Someone posted this poem and I just had to share. 

I Still would have chosen you - By Terri Banish

If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you

If God had told me, "This soul would one day need extra care and needs", I still would have chosen you

If He had told me, "This soul may make your heart bleed", I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you

If He had told me, "All that you know to be normal would drastically change", I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you.

When I read these words I instantly thought of all the horrible things that come along with having a child with ARPKD (like suffering, tears, and heartbreak). Then my mind shifted to the amazing child I have and how at the end of the day I wouldn't trade him for the world. I truly believe God chose Henry for me. He knew I needed someone like Henry in my life.

I am a believer that we are shaped by our experiences. Henry is the amazing child he is today because of this disease. I am a more patient, compassionate, loving, laid back, involved, aware, educated and enlightened mother because of this disease. I have chosen to not let this disease strip away all that is good but allow me to truly appreciate and relish in all the little miracles that happen. My son being one of those.

For me Henry is this little ball of love and light. Like all children he has that innocence about him. The childish wonder that fills your heart up with joy. I see his smile and can't imagine a life without him. I am so glad that he was brought into my life and I feel so blessed that luck has been on our side thus far in this disease. And I can honestly say with every ounce of my being that if I had known then what I know now I still would have chosen him.

Tuesday, September 4, 2012


The blog has been quiet and silent for quite sometime now, 7 months to be exact. In that time frame my family was blessed. We were blessed with another baby. A beautiful, healthy baby girl Olivia Mae.

The road to deciding to get pregnant again was a tough one. Once we did decide to take that chance I found that I became over come with fear about blogging about the experience. It wasn't until I was 37 weeks pregnant that I could honestly say I felt at ease that Olivia was PKD free. Now that she is here and our family is adjusting to life as a family of 4 I am ready to share my experiences and stories. I am ready to look back on the doubt, hope, fear, frustration and worry that I felt through out the whole pregnancy. 

There's been a lot of talk lately in the ARPKD community about choosing to have another child when you have one who is affected or have lost one baby already to the disease. Upon hearing this I realized that I had the opportunity to share my experience and use this blog as a platform to discuss the different options parents have when contemplating having another child. It is one of those decisions that weighs heavy on your heart. I know it weighed on mine. So in the coming weeks and months I'll be sharing lots of stories and information about my pregnancy, updating everyone on Henry's progress and continuing to share healthy recipes that Henry and our family enjoys.

Tuesday, January 24, 2012

Henry Update

Henry is doing amazingly well. At two and a half he is in the 75th percentile for height and the 50th percentile for weight. (At birth he was in the 5th percentile for height and even less for weight). He is continuing to grow and thrive and has loads of energy. This little man is not slowing down anytime soon and continues to be an active and happy kid.

Every 3 months or so we get Henry's blood drawn and all his levels are perfect. He has also been officially discharged from the pulmonary department. (Woohoo!!!) His lung capacity is perfect and he shows no signs of having breathing problems at all. (At birth he had under developed lungs and was on a ventilator).

The only small issue is of course his blood pressure. However we haven't had to change his captopril dose in over 4 months and we have been able to keep his blood pressure in a relatively safe area of 90/60.

I wish I could pinpoint exactly what we are doing to delay the effects of ARPKD in Henry but at the end of the day I think it just comes down to luck. However I will share some things we do that hopefully makes a difference.

We make a point to take Henry's blood pressure at home so we can monitor where he is at. Our doctor believes that the best way to preserve Henry's kidneys is to take an aggressive approach to controlling his blood pressure. During Henry's first year when he was growing at an alarming rate we were constantly increasing his captopril dose in order to keep his blood pressure numbers under control.

We restrict Henry's salt intake. Until henry was about 18 months old we avoided processed food with added salt and never used salt in our cooking. As he has gotten older we have allowed him to be 'normal' and we are try not to be overly concerned with what he eats at friends/families homes or when we go out to eat. That being said I never use salt when cooking or baking and choose low sodium products whenever possible.

We have greatly decreased Henry's consumption of animal protein. It is proven that animal protein is taxing on the kidneys and although Henry is a growing boy and needs protein in his diet I have tried to only have one meal a day actually consist of animal protein. Since Henry is also lactose intolerant we replace cows milk with fortified almond milk and replace butter with a vegan substitute. We incorporate beans and veggies into henry's diet to make sure he is getting the protein he needs to grow and use fortified orange juice and almond milk to keep his calcium level up.

I would love to think that these three things listed above make a difference in how Henry's disease progresses but truthfully I have no idea. I do believe that knowledge is power though and I find the PKD website and magazine to be really helpful in giving me tips and advice on how to manage this disease.

And because an update isn't as fun without pictures here are some images of Henry's first time riding a scooter.

Thursday, January 19, 2012

Back on the Wagon

It's been a long and crazy 6 months. I have thought many times about putting pen to paper (metaphorically speaking) and blogging. Yet I just couldn't do it. But I'm back and have lots of thoughts to share. I've realized in the past 6 months that regardless of my own personal trepidation about blogging, that this blog is bigger then me. There are people out there who need to hear what I have to say. Who are searching for answers, for advice, for experience and by me being afraid of sharing my life I'm not just doing myself a disservice but them as well.

So I'm back and will be blogging more and sharing more, I promise. Not just for everyone who follows this blog but for me as well. I'll be updating everyone soon on Henry's progress thus far but in the meantime here is an updated picture. At two and a half years old he is shaping up to be quite the little man.