Breezing by with Hirschsprung's Disease.. #57

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.. 

http://www.goenergetix.com

**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. 

More GI struggles.. Our life.. #53

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!

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.

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!!

10 & 11 month check in!!.. #28

It's been 2 months since I've checked in or given everyone an update. The past 2 months have flown by!! We had our 10 month GI check up and things went great.. We have started expanding our food options and are now doing 3 solid meals a day! Isaac had meat for the first time 2 nights ago. He had chicken :) He wasn't sure about it but did eat a few bites. I also found a specialty pancake mix that he can have so I've made him pancakes 2 mornings in a row. Raspberry one day and vanilla elecare (his formula) the next. He seems excited to try new things.. Or mash them together.

We had our 11 month surgeon appointment. We've been seeing her every 2 months instead of monthly. She said everything looks great and we will start seeing her less and less. We are graduating!!! Lol.. Makes us kind of sad but it also shows us he is doing really well. Can't believe it's almost been a whole year. Things have gone by so fast.

We started planning his FIRST birthday a few weeks ago. We decided to do an Elmo theme since he loves him so much. I can't wait to post pictures. We have spent a lot of time and planning on this. It will be perfect!!!! I ordered a "couture cake" from a local bakery. And they are also doing a special smash cake for him due to his allergies. We rented an Elmo costume and will be having a family member dress up. I hope the kids don't get scared! It will be a lot of fun. I found a photographer to do the party.. She is actually a friend so it will take a lot of stress off of us trying to capture all the moments so we can just enjoy the party!! :)

We did go a little overboard on the party but I don't care. He will only have his first birthday once and after the rough start he had, we all had, he deserves the best.. We have so many reasons to celebrate.

The Puyallup Fair is going on right now and we've been 4 times. My mom has a booth there so we've been going to visit her. Isaac loves all the animals and all the people. It's been such a great time. Last year I was still pregnant so we just went to eat. We did family photo buttons, picture booth pictures, and I got a special bracelet that says Isaac's name. I might try to go again before it's over so Isaac can ride the ponies or the camels. :)

Over the past couple months Isaac has really grown up. He is starting to take a few steps on his own! He is saying a few words too. His mind is sharp as a tack. You show him something once and he will remember it. It amazes me how their minds are like little sponges. He points to everything now. His favorite thing to do is to point at an object and order you around to get it. He uses you as a mode of transportation. It's so adorable!!!

Isaac also got his first haircut on September 11th. He did so well! He sat so quietly watching cartoons. It was so precious. We went to this kids salon and spa near our house. They were absolutely fabulous!!! We kept some hair for his baby book. Afterwards, he looked like such a little man. Even more grown up than he already does.

I will try to update again soon :) It's hard when you are so busy and things are going well!!!

Here we go again.. #11

I was hoping that our surgeon would be on call this weekend or the other surgeon that had discharged Isaac from the NICU. Jose actually picked up the phone and then looked at me and said it was our surgeon. I was so relieved. But when I got on the phone she told me who she was. Not our surgeon. :( I explained to her what was going on and she asked me a bunch of other questions. Did he have fever? No. Was he refusing to eat? No. Was he acting sick? No. Was his stomach distended? No. Did the diarrhea have a foul smell? No. Was he vomiting? No. She told me I could either wait awhile to see if this was just an isolated incident or I could head into the ER. It was my call. She said that because he had no other symptoms that it didn't sound emergent but she said it was up to me if I wanted to come in. I just felt in the pit of my stomach that something wasn't right but then again he had NO other symptoms of enterocolitis. But like all the horror stories I have read about your child can go from having one little symptom to being very ill very quickly. So I decided that we should probably take him in. Jose had to work that night like every Saturday night and by getting him checked out meant that I could come home and not worry about it. So we decided to pack up and head out..

When we got to the ER they assessed him. Basically the usual head to toe normal baby work up. They said he looked good and it was probably just an isolated incident. But I asked if the surgeon was going to come down and look him over.. Which is STANDARD Hirschsprung's baby procedure. And the ER doctor said no that they felt he was fine and they didn't need to contact the surgeon. They didn't even do an abdominal xray.. Which is also STANDARD procedure for Hirschsprung's babies. Well we insisted that they contact the surgeon because we had spoken to her and we would feel better if we could just get a quick word in with her about how she wanted to handle his care for the weekend. So the ER doctor contacted her. They came back in and said the surgeon wanted to get the abdominal xrays. Well duh people we had been saying that the whole time. So off to xray he went..

They ER doctor didn't even come back in.. The surgeon did. I asked her immediately if he was ok.. And she paused and said.. "The xray is VERY concerning." My stomach immediately dropped. My mind started racing and I burst into tears. I had no idea what that meant.. But from the look on her face I knew it wasn't good news. She told us she was going to pull up the xray to show us what was going on. This was the second time in my life I had been this scared. The first being, well obviously, when he was diagnosed.

She showed us on the xray how backed up with gas he was. His tummy was very distended internally but externally it was not very well pronounced. She said in the area where he had the surgery there was a narrowing. And she did not know why it was like that but there was definitely a "stricture" there. There was also talk of intussusception and a blockage. She said that she was going to examine him and do a catheter in his bottom to release all the air that was built up in there because it could not get out. I was panicking thinking that his surgery didn't work and we were back at square one. When we lifted up his shirt she saw the rash that numerous pediatricians had seen at his regular doctors office and asked how long it had been there. I said well kinda on and off for 2 weeks and then explained how 3 different doctors saw it and said it wasn't a big deal. She immediately said, that is a milk protein/soy allergy or another allergy and that's what could be causing all the rest of his symptoms. Um like gas, spitting up, distension, explosive diarrhea, and cause a stricture to form because allergies inflame the intestines. All those trips into his pediatrician and me knowing something was not right and they keeping telling me everything was normal, well look here buddy, I was RIGHT! I was so furious. How long had by baby been suffering??? Seriously. And the ER was about to send us home and we would have went home if we hadn't requested the surgeon to come down. This is why so many things go undiagnosed.. I have read SO many stories of other families STILL chasing answers for their babies. STILL fighting issues and illnesses because to doctors, they are just another kid. Everything falls into the "normal" category. My If you can't trust an EMERGENCY ROOM, who the hell can you trust? I'm glad I am the persistent mom that kept pushing. I will not take no for an answer. Just as I thought this would be a case solved and we would be given at home instructions, she dropped the bomb. He was being admitted. He needed further testing, time to clear out his system and she wanted to monitor him at least until Monday when our surgeon was back in the office so she could decide what she wanted to do. I was terrified.

The whole time this is going on, Isaac is happy as a clam. When we wheeled him up on a big huge bed to the pediatrics floor, he thought that was the coolest thing. Ha. I didn't. But I knew he was in the right place and he was going to get taken care of.

Nothing really happened over the weekend. He had a few more xrays that showed the gas was clear and things were looking better. The stricture was still there and could take at least 2 weeks to improve because of the inflammation. His intestines needed time to recover. He was on bowel rest for 24 hours which meant he couldn't eat anything. He was NOT happy about that. And we were waiting for a GI consult on Monday so we could really confirm this is what was going on. All his labs had come back fine, no infections or anything. Thank GOD! So pretty much hung out until Monday when his surgeon and his new GI doctor would come by to let us know what the plan would be.

On Monday, which was December 19th (ya so close to Christmas) our surgeon and GI told us that this was indeed an allergy but also intusseption was not ruled out and that they wanted to monitor him one more night and if things went ok, we could go home tomorrow. And upon discharge we would be given instructions for at home care. Our surgeon also wanted to do a barium xray which is what he had in the NICU so that she could get a better look at what was going on. She wanted to rule out any kinks or twists in the bowel, which she said can happen from surgery. Or if there was scar tissue that was forming. Or any other abnormality. But that wouldn't be for 2 weeks after the bowel had time to rest and some of the inflammation went down. How could I wait 2 weeks to find out if my baby was ok? Another wait and see thing.. But in the meantime,  Isaac was taking to his new formula.. Which I was happy about.

Tuesday the 20th we were released. We had to do at home irrigations which was a saline rinse on his bowels with a catheter. Not fun. But these help keep his system clear and reduces the risk of enterocolitis. So we had to learn how to do these. And we had to do them 2 times a day. We had a follow up appointment set with our surgeon and GI.. Now we basically had to wait for the contrast xray to really know if anything was going on. This was definitely weighing on my mind..