Saturday, December 13, 2014
Last week I sent over Isaac's picture and stats to a company called Zulily. Many people know it, if you don't I suggest you go check it out!!! They have kids clothing, toys, art supplies, and they also have adult clothing, shoe, home goods.. The list goes on.
Anyway, they contacted me right away and wanted him to model. His event is called Story Book Wishes and will be live online tomorrow December 14th. Here is the picture that popped up today on their website as a preview for tomorrow's sales. I am so proud of him ♡ I will post all the proofs they send me as well.
Friday, December 5, 2014
I feel like I haven't updated since October when Isaac had some testing done. Between then and now he also had some allergy testing done with his allergist. It had been a year since we had seen him last and we decided since Isaac was having some issues that now had been ruled out with his procedure under sedation by his GI, that maybe it could be food allergy related. We already knew from last year when he was allergy tested that he was lactose intolerant and also had an oat allergy. But we felt maybe someone else was going on.
This time the dr did a 35+ food panel. A lot more than his testing last year. And who would of know, he is allergic to TURKEY and COCONUT! How odd is that?! We eat a lot of turkey and chicken figuring it is a lean meat and easy to digest. We also gave him coconut water EVERY single day in his smoothie. After discussing with his allergist, we were pretty confident we should remove these foods from his diet. Especially after the episodes he was having. Everything kind of pin pointed to these foods at the culprit. What an easy fix! And relief for us.
He had the simple scratch test again. This time it was a little bit more intense because of how many foods were on the panel. And well because Isaac is 3.. A little bit more aware of what was going on. BUT he did amazing. He really did. He is such a strong boy.
So jump forward about a month, to the present. We just saw Isaac's surgeon and GI within the last week. Both of his exams went well. They felt around on his tummy, listened to his bowel sounds, and everything looked great! We didn't even need to go for an xray because they felt things looked really good from what they could see. Since removing those foods from his diet, we haven't noticed any of the symptoms we had been seeing. Which is such a relief. Now we need to get into our nutritional practitioner for a recheck. :) We also have continued chiropractic care which has been such an asset to this battle. In one of my other posts I also talked about the essential oils we use for digestive issues. We are still doing these as well, as needed. We seem to be breezing by with Hirschsprung's Disease. At least for now :)
I wanted to add this little insert to this post because this is a supplement Isaac's nutritional practitioner has him on. Which has also kept him regular and has been helping to "heal" his gut. As you can see from the ingredients, this is really beneficial for HD kiddos. It has a lot of natural elements to help with bowel movements and for digestive upset. It is called Core Condurango Blend by Energetix. I will put the link to their site here..
**Disclaimer - I am not a licensed medical professional. I only administer supplements and natural products under a medical professional advice. I am not claiming to cure or treat any medical condition. This is what has worked for my child, but may not work for yours. Please do your research on ANY product you chose for your child. Speak to a medical professional. I am just a mom trying to help her son in any way possible. Energetix only sells their products to licensed healthcare professionals so find a reputable practitioner in your area.
Thursday, October 9, 2014
Last Friday, the 3rd, we decided to go ahead with the Flex Sig and additional testing under sedation. With the continuing episodes of mucus in the stool and stomach pains, we thought it would be a good idea to just go ahead with it. So they got us on the schedule for Monday October 6th. Check in time 10am, procedure time 11am. I really felt like I had been punched in the gut. Usually I feel like I have time to prepare, we had an additional barium enema and exam under general anesthesia with our surgeon and we had at least 2 weeks to plan for those. This was scheduled for 3 days away. His 3rd birthday party was Sunday. I was already stressing about preparing for that.
We arrived at the hospital in the day surgery area. Had to get all checked in. When they brought us back to the pre-op (not necessarily called that but I don't know what else to call it lol) room they went over all the standard info - medical history, allergies, etc. They also explained to us how they have critical care nurses and a critical care dr in the room during the procedure. I was expecting things to be less formal. This seemed like surgery all over again. It was kind of anxiety provoking but I felt reassured that they were doing all the steps necessary to keep my son safe. We got to meet the pediatric critical care dr. We really liked him a lot. We also got to see Isaac's GI dr who reassured us everything would be ok. I was a complete mess. It's really scary having your child go through anything. Surgery, exams under anesthesia, sedated procedures. It just really got me emotional and upset. Luckily, our GI dr is super amazing and reassured me, and I obviously trust him without a doubt. He is an amazing dr. I was really struggling emotionally with this. I wasn't scared to find out the results, I was scared to let him be sedated. Plus, they do that through an IV and my son has always been hard to get IV's in. Lots of hours, screaming crying, miserable times trying to get the IV's in. So I was really nervous about this IV deal. But they do a lot of prep work and have a lot of tricks for kids who are hard sticks. I was truly amazed at their technique.
First, they put lidocaine on 4 different areas of his hands/arms. 4 places prepped so they could get an IV in. Then they put little hot packs on them. The IV went in right away and he didn't even notice. Didn't even make a peep. How amazing. A child life specialists was entertaining him on the iPad which really really helped. I can't even believe how fast and efficient this team was. It made everything so much easier on Isaac and us.
The actual procedure only lasted about 15 minutes. Originally he was just supposed to have a flex sig which just looks at his sigmoid colon but since his dr was not seeing anything concerning he decided to do a whole colonoscopy. He said to the naked eye he did not see anything concerning or anything that could tell us why these episodes were happening. There was no inflammation there. He did take 10 biopsies though while he was in there. He said everything looked great. Which was excellent news.
Isaac never missed a beat. He woke up, asked for the goldfish crackers he was promised and the juice. :) He was charming his nurse and he even got a present from the staff since his birthday was just a few days away. I cannot believe how brave my son is. He never acted scared. Not once. NOT ONCE. He is only 3. He amazes me every single day.
We got word on Tuesday night that all his biopsies were NEGATIVE. His dr thinks that the texture of his stool (which he saw on the colonoscopy) - gritty and thick - is the culprit behind the mucus and occasional blood. We are working on getting his stool and colon more hydrated, keeping the moisture in, and see if that helps with these episodes. Which makes sense. So as of now, that is our plan for care. We will see his GI back in less than 2 months. WHAT A RELIEF!
Here is my BRAVE guy :)
This last picture shows where he took the biopsies and the area that is circled is where his surgeon removed the diseased bowel and reconnected down
Friday, October 3, 2014
Well the past 6 weeks or so have been pretty confusing. What we thought was some type of viral or bacterial GI infection seems to be some type of episodes. The reason I say that is, I can pin point other times this has happened this year which never mounted to being a full blown virus. No fever, no vomiting, no watery diarrhea. It has been soft mushy stool, intense stomach pains, and just this past few weeks mucus and blood.
We decided after seeing our surgeon that is NOT Hirschsprung's related. But it is GI related. So she suggested we meet with our GI dr right away. Which we did, on Wednesday. We had a pretty lengthy appointment. We discussed everything that has been going on and he felt we needed to take a look further into things. Which means having a Flex Sig and an upper GI study so he can see his small intestine and also his sigmoid colon. He will be looking at where this inflammation is coming from. The mucus and blood usually mean some type of inflammatory issue. He said it could be a wide range of things.. From a food intolerance, an autoimmune disease, IBS, or maybe even no cause behind it. There is a wide, wide range of things he said. He will take biopsies during the procedure. He is looking for specific things that will help with a diagnosis.
At first we had no time frame for these procedures because he wanted him to be in an "episode" so he could see what was actively going on. It's like how are you going to see the inflammation when it's resolved 2 weeks later? So we really didn't have a time frame for the testing. It could be next week, next month, or next year. But then today the symptoms started again and we believe he is in an episode.
His testing got fast tracked to this Monday. The 6th. Sunday is his 3rd birthday party and Wednesday the 8th is his actual 3rd birthday. I never ever figured we would be celebrating his birthday and dealing with these issues at the same time. But we are ready for some answers. I just pray it is nothing more than some type of food intolerance or even IBS would be ok. I just can't take another punch in the stomach with another diagnosis.
I have been having a lot of anxiety today thinking about Monday. I just don't even have the words for it. I am utterly speechless. Numb. Sad. Confused. Angry. And frustrated. I just keep praying that things will be ok and we breeze through this.
Please keep my baby in your prayers. That's all we ask for right now. I will update more this week and post a few pics from his birthday. ♡
Thursday, September 25, 2014
Well this past month has been a struggle to say the least. We thought about 4 weeks ago Isaac was sick from a viral stomach bug or possibly a Hirschsprung's related infection. We did antibiotics for the first time as a preventative to be safe. Which totally messed up his whole system. We've been trying to get him back regular. Working closely with his surgeon, chiropractor, and nutritional practitioner. Fast forward to now.. a few weeks later and we are having issues again.
First it starts with stomach cramping, loose mushy stools (not diarrhea), and this past week has been accompanied by blood and mucus. This is leaving us stumped because nothing has changed in his diet. He has been food allergy tested. We don't do dairy, limit soy and gluten and absolutely no GMO's. We started thinking back to this past year and really believe all these situations are not all viral but some type of other GI episodes.
We saw his surgeon today who also feels the same.. this is not viral but some type of other GI issue. She does feel it is not Hirschsprung's related though. Which is good. She decided to consult with our GI dr (they work in the same clinic) and have him get in touch with us and see Isaac asap. She feels maybe more food allergy testing is needed or maybe our GI will have some other ideas of what it could be.
This week has been stressful, to say the least. More questions, some answers, and a lot to think about. We enrolled Isaac in a toddler parent program at a local private school. He was unable to attend today because of what has been going on. We only go one day a week so it was a bummer we didn't get to do that today.
His 3rd birthday in about 2 weeks away. I can't believe it. I having planning a party last minute because of the issues he has been having. This year the theme is Ninja Turtles :) His current obession. I hope we can be healthy for his party we are so excited to celebrate. ♡ I will update more as I get it..
As always, thanks for following our journey!
Tuesday, September 2, 2014
The past couple weeks have been a bit rough. Isaac had an ER visit about 2 weeks ago because he was having abdominal pain, loud gastric noises, diarrhea, and just plainly uncomfortable. It was determined to be some type of viral stomach bug. Fast forward to today and he is not feeling 100% again. Not exactly sure what is going on. His stool was pretty formed which means he could be constipated. So we are treating accordingly. I really hope nothing is going on. For the first half of the day he laid on the floor and didn't want food or water. We had to give him an irrigation to figure out what was going on. The return was all clear saline so which means his immediate bowel was clear. Then about 20 minutes later he has a well formed large stool. But did give us the conformation he was constipated - higher up into his large intestine. Just by the texture and look of the stool. The irrigation definitely loosened things up, enough for it to come down. He started to perk up and even ate breakfast and drank his smoothie. But now we are back to laying on the ground and just looking kind of sad.
Hirschsprung's is so anxiety provoking and just so frustrating. Being a HD parent is so hard sometimes. I can't even explain it. You watch your child suffer and struggle and there is nothing you can do. I don't mean like well we just didn't do anything for him and let him suffer, we gave him an irrigation and took him to the chiropractor right away, I meant that I can't cure this disease. No one can. So there will probably be a lot more days like this. And it sucks. It sucks. We are constantly having to watch what he eats, making sure he has lots of fruits and veggies, pushing water, making sure his bowel moves regular. And sometimes it's just not enough. And then we end up in situations like this. It puts a lot of stress in our house because everything has to stop because of this disease. I had to watch my husband go to work because we need the money, which stressed both of us out, then I had to take Isaac out when he's not feeling well because I had to pay bills and go to the bank. Things that couldn't wait. Meanwhile, my house is not tidy, I have not planned dinner, and I haven't showered. People don't understand what's so hard about having a kid with a medical condition. Well read above and maybe you will understand. Everything stops when your child is having problems. We spent all morning on and off the phone with his surgeon.. That took up most of our morning. It's just never ending. I am not asking for sympathy, just some compassion. Sorry if I missed your bday or some big event in your life. Sorry if I don't call much or don't answer when you call. Things are just not good for us right now. Trust me, I wish we could share all these special moments with our friends and family, but we have an everyday battle for us. Much like today.. ♡