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.