Pictures from Isaac's 2nd Birthday.. (October).. #41

Super long update.. #40

It has been months since I have updated. The summer flew right by us! I didn't even update with pictures of Isaac's SECOND birthday. That will be in my next post. :) I feel like we have had so many appointments since I updated last, we added a new practitioner to Isaac's team - which I will touch on in the following paragraphs. We continue to see his GI and pediatric surgeon regularly. We have been seeing his surgeon more over the last couple months because Isaac started complaining that his tummy was hurting. This was in late October. So we decided to make an appointment with his surgeon to make sure nothing was going on. Well she saw a little more stool on his abdominal xray than she would of liked. She suggested doing some chia seeds daily to see if that would help move things along more. After a month of doing those we had a follow up appointment and within that time frame things did not change on his xray. So she suggested we add some Senna. I was so hesitant to start something like a stimulant laxative so I took the recommendation of few moms I know, and took him to see a holistic nutritional practitioner. She gave us 2 supplements to start with him but did tell us that we would need to do a round of them before we saw much of a difference.. Which would be between a month and a month and a half. So far we are 10 days in and I feel like I have seen some improvements. However, we had another follow up with Isaac's surgeon and the xray still showed his colon was full of stool. Right now we are at such a crossroads that we don't know what to do. We don't know if this is just normal toddler things, or if this is an issue arising from his Hirschsprung's. Our surgeon again recommended we tried the Senna for a short term. Hoping to get him cleaned out and reset his bowel.. And then hopefully be able to take him off of it. I placed a call into our new practitioner we are seeing, hoping to hear from her tomorrow before we go ahead on the Senna. It is so hard, I struggle everyday worrying about if I am making the right decision for my child. I worry about giving him Senna. I worry about not giving him Senna. And then him getting so backed up that his colon gets impacted or it causes some other issue. I want to get him bowel back working correctly but how do we do that? Will it be combination of a natural approach and the intense medical side approach? I believe you have to have a good balance of both worlds. I am hoping to get as much information as I can in the following days. But I can say one thing, I AM SO GLAD WE ARE NOT IN THE HOSPITAL THIS YEAR AROUND THIS TIME. Both years prior we were admitted into the hospital and spent 5 days there.. Barely getting out before Christmas.

We are expecting some snow tonight.. They said it would roll in about 12 midnight.. It's 12:48 so I better take a look to see if we have any yet. We didn't get any snow last year.. So this year better be good!!! This year we are all ready for Christmas. I am so happy! We got all our shopping and crafting done. I am having a date with on of my best friends on Saturday to run some last minute errands and pick up the last few small gifts. I am so excited to be able to enjoy the holidays this year.

 I am still stressed about what is going on with Isaac, but I feel like we have a huge network of people that will help get us over this. I just have to stay positive and always seek the best answer for my son. A lot of people don't understand what it's like being a parent of a HD child. If you read another HD blog, our stories are very similar, but some kids do have it harder. Each journey is different, but in the small scheme of things, it is all the same. I still have yet to meet another HD family on our area. Which makes it hard because no one really understands what we go through everyday. People don't understand why we have to eat a certain way, or why he can't have certain things - like juice or bananas. It is so tiresome trying to explain over and over and over again why we can't do this or do that, or can't eat that or eat this. Or why we label read. Or why we only eat organic. People just think it's an easy fix. Hirschsprung's is a LIFE LONG condition. Just because he had surgery does not mean his condition is fixed or cured. So sometimes I feel like we are alone in this. I just wish for once I could sit down with a mom of an HD child and talk over food. It really is lonely out here.. I would also like Isaac to have some HD friends. So he can relate to someone when he is old enough to understand. Sure it's hard going to parties or eat out of our home when other kids or adults are eating things he can't. That's why we hardly go out to dinner or eat at others houses. I take him to a tot class during the week and they do a snack. They give apple juice to the kids, and my kid is the kid who gets water. I hate having to bring his water out and him see look at the other kids and then look at me like why can't I have juice. We do some juice occasionally at home, but definitely not apple juice. That really upsets his stomach. I am already thinking about when he is older about how people will interpret his condition and react to it. I don't want his dietary restrictions to make him an outcast. If that makes sense? I already hear crap from my own family members about his diet, what will non family members say? Maybe I am over thinking it.. I don't know. We have also made some other dietary adjustments after seeing the nutritional practitioner which includes NO GMO's, no high fructose corn syrup, or any yellow corn products. All these things can cause a disruption and inflammation in his gut.

On another note, our Seahawks are doing amazing!!! I am positive we will be heading to the super bowl. We love watching the games every week. And Isaac is a huge fan already. His entire room is done in the Seahawks. We have even taken him to a few autograph signings and he loved it. Needless to say, he asked for a helmet and jersey for Christmas. :) And all he wants to wear is Seahawks gear. His favorite players are Russell Wilson and Richard Sherman. So proud!! We are big football fans in our house.

Last year Santa didn't go over too well, so this year I figured it would not be any better. But boy did he surprise me!!! He talked to Santa, sat on his lap, and told him what he wanted (a seahawks helmet and jersey) and then gave him a high five. I still had to be in the picture, just within arms reach. I was so proud of him. We should be getting the pictures soon, so I will post then.

So all in all, I think things are going well for the most part. I will be updating in the next couple days on the situation that is going on. I hope to have some answers soon. In case I don't make it on before Christmas, MERRY CHRISTMAS!!! Thank you all for following Isaac's journey.

Just some encouragement.. #39

Last night after posting our last update I was browsing online and came across a blog about child Isaac's age that was fighting cancer. I couldn't even IMAGINE. I have a few friends that have young, young children that have already fought and BEAT CANCER! It was so hard hearing their stories and watching everything they went through. That would be the hardest thing as a parent to go through. But the real reason of this post was to share this quote I read on this child's blog. It really put things into perspective for me. Helped me smile in the "now" and made me hopeful for the future. I changed the wording around to fit our situation, but the idea is still the same. I thank that child's dad for this quote which makes the pain of this whole journey a little less, and to smile in the now..

No one knows what the future has in store for our little one; we have no control over that. However, one thing I can control is the present -- and I can assure you, he will have the best "now" we can give him.

Check in.. #38

Summer has officially came and went.. It has been pouring for the last couple days. Flooding in some areas! I hear this winter is supposed to be really bad. But I love snow, and I hope to get some this year. We really did have a great summer. Most days were above 80 degrees. In fact, we found a new pool to take Isaac to a few weeks ago and I hope we at least get one more day to take him there. He shows me the way he floats in the pool when he is taking a bath. It is the cutest thing ever. Enough about the weather though, I have lots to catch everyone up on.

Today we went and saw an allergist. Our GI doctor recommended we go for food allergy testing since Isaac was still on his Elecare formula and not tolerating milk. We also wanted to get a definite answer on what food allergies he had. We have been avoiding certain things since basically he was a newborn - milk protein, soy, gluten, peanuts, oatmeal.

The appointment went really well. He had ZERO allergies!!! NONE! I am so happy. But since Isaac did have a severe reaction to oatmeal in the past, the doctor did give us an EPIpen to be safe. We are going back in 2 weeks to retest for the oat allergy. He asked us to bring in fresh, real oats. He said that there was a 10% chance the test they did (they did not have real oats in the lab) did not give us the correct result. So since there is still a 10% chance he could have that allergy, he wants to be 100% sure. So 2 weeks from now we bring in our little bag of oatmeal, and they break it down and we repeat the test. Isaac was so good for the test. I am so proud of him. They did the scratch test so no pokes. He was so brave. I just can't believe how mild mannered he is for being 2. So even though he tested negative for a milk allergy, the allergist thinks it's an intolerance. Allergy vs intolerance = totally different. So no cow's milk. We will try to see if Isaac takes to hemp, almond or coconut milk.

About 2 weeks ago we saw his GI doctor for our 6 months ish check in. That's when we talked about the food allergies and such and why he referred us to an allergist. He was overall pleased with Isaac's progress and we have no new instructions or plans for his care. Which is awesome.

We also saw his surgeon that same week we saw his GI. It was pretty much in and out. No new plans for his care. He is doing so well. I can only pray and hope that my little guy continues to do as well as he has. With the upcoming cold season I am hoping we DO NOT GET THE STOMACH BUG AGAIN! Isaac got it 2 times during the winter months last year. UG! I am thinking maybe we should be housebound. I only say that because every time he has had it (3 times in his life), we end up getting admitted to the hospital. I would like to spend my days before Christmas at home this year. Actually getting to celebrate Christmas. His first Christmas we were admitted into the hospital on December 17th (you can read that entry on our blog here http://sweetbabyisaac.blogspot.com/2012/03/normal-or-not-10.html and here http://sweetbabyisaac.blogspot.com/2012/03/here-we-go-again-11.html) and then again last Christmas on the EXACT SAME DAY - December 17th. I am hoping this year we can actually have a normal Christmas. That is all I am asking for.

Last Christmas we actually planned to do Christmas dinner at our house. We were going to cook. We were so excited. But by the time Isaac was discharged and feeling better, my mom caught the stomach bug and then I was feeling sick for a few days. So we had to cancel our party. So bummed out. I took it really hard because my aunt was diagnosed with adenocarcinoma and was in stage 4 already. Terminal. She was not even 50 years old. We lost her on May 15th, 2013 on Jose's birthday. Roughly 5 months after she was diagnosed. It was like the most emotional day for me. Trying to celebrate my soon to be husbands birthday but grieving for another person. That Christmas would have been the best. It would have been our last together as a family. It is still hard for me to think about. I am hoping this year we can just catch a break. Christmas is supposed to be the most wonderful time of the year! It hasn't been for us the past 2 years.. We need it this year! :)

On a better note.. Isaac will be 2 next month. 2. TWO. DOS! I cannot believe it. Can't wait to talk about his party in a future blog post.

Oh and one last thing.. FOOTBALL SEASON IS HERE!!!!! And what better place to live then the Seattle area.. Seahawks are going to the Super Bowl this year FOR SURE. And winning.. I might ad :) Just had to put that out there.

Hope you all are doing well.. Stay blessed. And thank you for reading our blog and following Isaac's journey with Hirschsprung's Disease. Here is my big old baby.

Long time no see!!!.. #37

Well... It's been about 3 months since I have updated. It seems like 3 months has been the mark for finally updating lately. No news is good news right?! :) I have gotten asked a few different times if I am still blogging.. And that my posts are missed. Made me feel good about what I do here. I have been so neglectful and I hate that! But life with a very busy almost 2 (Yes TWO) year old has been anything but slow.

Not much new on the Hirschsprung's front. We have seen our surgeon at least once since I last updated. And we see our fabulous GI dr next month. August. Sheesh! I can't believe we are well into the summer. Isaac has continued to do well and we manage his HD everyday. We are always conscious about what goes in his mouth.. And welll... Comes out the other end. The normal life of a HD parent. 

One thing I can say about this journey is I have made a lot of friends whose kids also have HD. But the downfall, not one of them lives near us or even in our state!!! But I have a great group of moms who I chat with frequently. One in particular, who I spent hours talking to in the very beginning, that I still talk to on a regular basis. Our boys are within a week of each other, and have almost the exact same story. It's nice to be able to talk to other parents who have shared your struggles and successes. HD is a very hard thing to understand. 

As for our family life, the Franco's got a house!!!!! We are over the moon excited. It's so nice having a huge yard for Isaac. He loves being outside. We have a nice garden that we will be planting fruits and veggies in next year. Only because the season has come and gone to plant anything now. Isaac does love helping me water all the flower beds and the grass. The exterior of the house was just painted and came out awesome!!!!! We are just now getting somewhat settled after being here for about a month. It sure does take a lot to move and then get settled. I feel like I have a ton of projects for this house. I bought a vintage bed frame and painted it white to match our bedroom furniture. What a task! It's been easy but just finding a little extra time to do it has been challenging. I can't wait to get it set up! I just have to sand a few places and put some finishing touches on it. I have the target date set for next weekend. :) 

I guess that's really all the news I have to report for now.. Here's a few pictures to enjoy!! 

Just because.. #36

I don't think I have ever done a "just because" post.. So today, I'm doing just that!!!!

Today we took Isaac to the spring fair. First we saw the dock dogs, which are the dogs who jump into the water competing to see who can jump the farthest. Isaac absolutely loved seeing the dogs swim. Then we went on to see cows, pigs, roosters, goats, camels, just about any animal you can think of. We even played a few games. Isaac won 2 stuffed crayons. He was proud of himself. Then we stopped for some lunch.. He had his own corn on the cob for the first time. He thought that was pretty cool too. And we also did his favorite thing... Take pictures. We did a photo button and the photo strip in the booth. He loves pictures so much. I even got him to make a silly face with his tongue sticking out.

And the reason behind this post.. The just because reason.. This picture..

Isaac kept running up to this booth screaming "Bat Bat Bat!!!" So guess who we brought home today from the fair? Isaac even invited him to sit in the stroller so he could make sure he made it to our car. Which meant he was for sure going home with us..

I haven't updated since Christmas?!?.. #35

I can't believe I've been neglecting blogging for almost 4 months. A lot has happened this new year. 2013! And by a lot I mean ALL good things... Nothing really new on the HD front. Which is good. :)

We had our 17 month check up with our GI and surgeon. As of now we are just restricting certain grains (oatmeal), soy, and nuts. All allergy stuff. He was 26.5 pounds at his appointment. Can't believe how big he is. We don't go back to the GI for 4 months and 6 (yep SIX) months with his surgeon.

As far as milestones, he's talking up a storm. I think I've counted about 30 words he says on a regular basis. He understands everything, he's too smart!! I can't wait for summer so we can do all kinds of outdoor activities. He loved the pool last year so hoping we can enjoy that again this year.

We took a family vacation to Cannon Beach, Oregon at the end of February. It was so nice to get away for 4 days. Isaac definitely enjoyed running on the beach in his raincoat and rain boots :). We got a little rain but for the most part it was sunny. We are now thinking about having our wedding there! And will probably take a trip back in the late summer or early fall to set things in stone. We just really haven't had any time to plan yet. And I'm glad we waited because having our wedding there seems to be like the perfect idea.

We also took Isaac to see the Easter bunny. This year definitely wasn't like last!!! He did not want to get close to him. So I ended up sitting next to the bunny with Isaac standing on my lap.. As far away from him as he could get. It was quite comical. He loved Elmo on his birthday so I figured the bunny wouldn't be an issue. Boy was I wrong! :)

That's pretty much the short version of what's been going on for the last couple months here with us. Easter is Sunday and we are planning an Easter egg hunt for him. :) Can't wait to feast and spend time with family!!