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 camera..lol). 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.

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.

Blessed

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.

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.

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.

Milk Free

Recently we have become a milk free household. The road to finding out Henry was lactose intolerant was a long one. I'll spare everyone the gross details but we figured out pretty quickly that whenever henry had dairy he had blood in his stools.

Henry nursed until he was 18 months old and because he refused to drink milk or cheese I didn't think anything of it because he was getting enough calcium and vitamin D from nursing. However as soon as he stopped nursing his blood work showed a huge vitamin D deficiency. Not only was Henry not eating any dairy but he was starting to refuse to eat meat as well. So we put Henry on vitamin d supplements and really tried to push the dairy on him and well mayhem arose.

As a mom I just had this feeling and knew that dairy was the culprit so I took the milk and cheese out of his diet and made an appointment with the doctor. Henry was tested and although he didn't have a milk protein allergy the doctor is 99% sure he is lactose intolerant. I was glad to finally have a diagnosis but it brought up a whole slew of issues. Now that I knew he was lactose intolerant I had to figure out just how sensitive he was to dairy.

Most lactose intolerant children just have to avoid dairy like mik, cheese and ice cream. They can have foods like hard cheese and yogurt though. However with Henry once the main culprits were out of his diet I found he would still have 'episodes'. We had a cookout and henry ate a hotdog on a bun. The next day was just awful and I couldn't figure out why. My friend did some googling and then I found out a slew of products contain lactose in order to help perserve them better. Bread, hotdogs, luncheon meats, shortening, salad dressings along with lots of processed foods.

It has become quite a frustrating task. Although once Henry has had a true non-dairy day I have realized what his diapers should look like. I do feel lucky that he is not deathly allergic and the most severe we have to deal with is gas, diaper rash and a very sore bottom.

The most difficult thing now is that everything should really be made from scratch. I've been in the kitchen experimenting and have made dairy free bread as well as muffins. I think I have checked out just about every vegan and non dairy cook book available at the Library. The good news is I have lots more recipes just waiting to be shared here. The best part being that they are all dairy free and Henry approved!

Curry Rice

I consider Henry a fairly adventurous eater. He'll typically try anything and has always been one of those kids who likes 'non' kids food. Some of his favorites being avocados and guacamole, hummus, beans, fish tacos, cobb salad and now curry rice. My mother in law introduced me to a curry rice that you can get in the freezer section at trader joes. Henry loved it so much that I figured I would save some money and just make my own version at home.

This is one of those recipes that just worked from the getgo. I do a lot of experimenting in our kitchen and often I have to tweak something after the first try or my husband will kindly ask me to never make a dish again (like my disastrous greek orzo pasta salad). I have to say I am not a curry fan at all but this rice is off the charts delicious. It's also super easy and fast to make.

Here are the ingredients:

3 cups Cooked Jasmine Rice
1 cup frozen Peas
1 cup frozen Corn
1/2 cup raisens
1/2 cup Yellow Curry Sauce (I got mine from Trader Joe's)

The Directions:

1. Follow the directions on your package of rice to allow for 3 full cups of cooked rice. (I buy my rice in bulk so I simply measured out the amount of rice and water needed to make 3 cups. I boiled the water and then added in the rice and simmered for 12 minutes.)
2. Once the rice is done cooking remove the pot from the heat and set the rice aside.
3. Place an empty pan on the stove over medium heat. Add 1 TBS of oil.
4. When the oil is heated through add the frozen peas and frozen corn to the pan.

5. Sauté the pees and corn together for about 5 minutes until they are cooked through.
6. Next add in the raisens, curry and rice to the veggies.
7. Thoroughly mix everything together and let it all cook for another 5 minutes or so to make sure everything is heated through.
7. Serve and enjoy!!

I absolutely love this super simple rice dish and trust me it is also super yummy as well. I served mine alongside a roaseted chicken. Here is what the rice looks like when its done: