LIVING

With EoE, Allergies, Asthma and a G-Tube

We’re EATING!

It is awesome that Gage and Tinleigh are eating now. As of today Gage has added apple, buckwheat, corn, pickles / cucumber, VeganEgg, squash and oats. Tinleigh is up to banana, corn, squash, potato and pear. Tinleigh tried pickle and coconut but had a reaction to both. When she tried pickle her bottom lip swelled up and with coconut her throat felt funny she told us.

PicsArt_03-13-09.45.23What I completely forgot about was how hard it is to cook for all the people! I try to make fun things for them to eat so they get the full spectrum of foods with what little they have. I’ll tell you what though, it’s tough. Every recipe is 50 different ingredients. The dishes pile high and then it feels like you’re starting all over again.

I have successfully made Gage some buckwheat cornbread. Just to see the smile on his face when he eats it defiantly makes it all worth  the while. He’s also had buckwheat pancakes and buckwheat apple cinnamon muffins. I think he’s in heaven . I tried to make Tinleigh some banana coconut muffins but those bothered her throat. She’s loving corn and we had totally forgotten about corn pasta! Huge hurrah for that. She keeps telling me she is just having the best days of her life because she can eat different foods. Makes my heart smile and break all at the same time.

I’ve found them dried fruits to snack on along with safe fruit leather. Gage can eat crackers and they both have noodles now. It’s all so exciting to them. Potato chips, corn chips and popcorn! Things every kid should be able to enjoy.

20170313_131333On the new news front we had Layton’s allergies tested. She was so cooperative and brave. Poor thing had no idea she was about to be pricked 50 times. She didn’t even cry out. She did hit me twice when it was done though and that’s okay. Lucky for her only 3 things showed up; clam, oyster and flounder. She’s eaten fish sticks and snuck some of Charlie’s shrimp before but never had a reaction. Her testing was so small they said just use caution. Well I don’t think she’s a huge oyster fan so I doubt we’ll have any trouble telling her no. We still plan to scope her in April and see if anything is going on in there.

Tinleigh had a huge reaction to playing with play dough so that’s completely out now. She’s had smaller reactions here and there. Sometimes even played with it and didn’t have a reaction at all. This last one really got her so I told her no more. She wishes play dough was never created.

Tinleigh’s airborne reactions seem to be under control. She did have some freak eye incident a few days ago. Her eyes just swelled up. I have no idea why. We threw her in the shower and gave her some Benadryl and she cleared up. You never know who’s going to react to what here.

What I’m most excited about soon is spring break. We LOVE the beach and the beach loves us. It will be even more awesome that this year we can actually go out to eat. We never do because it’s just too hard to eat in front of them. This year I can pack them food and everyone will get to eat together!

March 13, 2017 Posted by | Gage's allergies, Layton's food exploration, LIVING | , , , , , , , , , , , , | 1 Comment

Why Not?

So if I’m getting back into blogging why not just turn this into our allergy reaction diary instead of a blog? Is there a difference?

I need notes. The daily what happened to whom. I really need someone just following me around all day with a pad and paper writing things down for me.

Today was great. Aside from Layton’s typical not wanting to eat anything. Which has been worse for the last week, but I am blaming her cold right now.

This evening Gage started in with his typical “I’m hungry”. He says this even while hooked up to his feeding tube. He misses eating more than I could ever imagine, even though his tummy is full. I ask him what he wants and his response “something crunchy but chewy, something like French fries”. This kills me to the core. Not only do I not have a solution for his want, I painfully know that he will never have French fries. The last time Gage ate potato he vomited everywhere, he was one. He only knows what a French fry looks like. He has no ide what it tastes like. He’s anaphylactic to potato, he’ll never taste one.

You see, now, when Gage asks me for something to eat he’s very descriptive. He knows what texture he wants, he knows if he wants sweet or salty. He wants to eat real food. It makes me so sad that it’s also started making me angry. There is nothing I can do for him. Nothing.

I think though, Gage still has hope. That’s the one thing I feel is slipping from me. Even though Gage is so frustrated and hates his disease, he still see’s the future and him not having a feeding tube. He can see himself eating food. We’ve been in this for 7 years and we’re not where I had envisioned us being. I guess that’s why my hope is falling.

It’s all the little events too that are killing my spirit. Like tonight. Once Gage settled on some raw cauliflower with salt I thought all would be well. I knew it wasn’t what he really wanted, but he crunched away. Then after he had crunched through one big tree he says mom my eye is itchy. I told him he was getting in the shower next and he would be okay. However, he comes over to me and says and there’s a bump on my lip. Sure enough he had a little blister right there on his lip as his eye was becoming more and more red. He went into the bathroom to hop in the shower. When I took him in a towel I noticed he also had a big hive on his back. That’s when the partial panic sets in. Is this going to be a full blown anaphylactic reaction? So we gave him a Benadryl and I told him if he starts feeling anything in his throat or with his breathing to get out of the shower and come get me. Luckily, his reaction didn’t get out of control. His throat did hurt a bit but the Benadryl kicked in and he was fine.

So now we have the issue of what the heck happened? Was it just the salt? Has he become allergic to cauliflower? I’ll have a talk with him about it and see what his judgement is on it. I’ll let him make the decision on if he tries it again or not.

Be strong and courageous.

Do not be afraid;

do not be discouraged,

for the

Lord your God

will be with you wherever you go.

Joshua 1:9

 

February 6, 2017 Posted by | Gage's allergies, LIVING | , , , | Leave a comment

It Hit Harder Than I Expected.

This is long…

Gage has been trialing dairy. He had been begging to trial it. Our GI said okay, let’s just let him trial it and see what happens. The thing about dairy is it’s a huge trigger for the majority of EoE kids. The last time Gage had dairy he was 4. It was the very last thing we removed from his diet before he got his feeding tube.

Gage has had symptoms. He’s typically not symptomatic. He has had blood in his stool, his throat burns, chest pain, reflux, dark circles around his eyes… all signs he was failing. I only knew about the eyes and blood. He was keeping the other stuff from me, but told the GI doctor at our appointment. The thing about my boys is they don’t tell me these things unless it becomes unbearable. They’re tough kids. 20160128_080054A few days after the check up with GI Gage had his dairy trial scope. I knew it probably wouldn’t be good. After the scope the doctor came out with pictures as usual. He said it really hadn’t changed since his last scope, which was a fail. So I assumed dairy was a fail, but had hopes that maybe it was a low fail and it may be something he can have every now and then. He has so many Ige allergies it almost seems like we’re running out of options to trial. Ige allergies are separate from EoE triggers. They can sometimes cross paths, but if he’s having a reaction to a food he’s not going to trial it in fear of an anaphylactic reaction. 20160128_095525

Today the nurse called me with the results. Dairy is a huge fail for Gage. Eosinophil counts should be zero in the esophagus. Gage’s mid esophagus count was above 120, his lower esophagus was above 100. We will have to remove dairy for 6 weeks to let him heal and not add anything new in. We then need to decided if we want to wait 2 more weeks and scope him to make sure he is back at zero. We had removed rice, his first passed trial, because his numbers continued staying elevated. Which I think we will scope at 8 weeks. Then he will begin a lamb trial. With $5 strawberries and blueberries right now, along with $6 bags of shrimp and Tinleigh’s $5 chocolate chips why not add a super expensive meat. I may need a go fund me page just for our grocery bill. 20160128_100201

I am so sad for Gage. I don’t even want to pick him up from school today because I don’t want to tell him it’s a fail. Dairy was his dream food. He can’t have it, probably, for the rest of his life. This disease sucks. I can’t stop crying today. It’s rough on a mom. I know it’s him going through all of the scopes, skin prick testing, allergic reactions, pain from food trials, disappointment from failed scopes, it breaks my heart though to watch him endure all of this. It’s becoming harder and harder for me to stay positive for him, but I do.

This was a hard year for me. I’ve spent the last 6 years navigating this disease for 1, then 2, now 3 kids. I’ve learned so much about food, ingredients and have memorized so much. I’ve learned to keep them safe and taught them how to keep themselves safe. Crossing into 2015 I sort of took a step back and focused on myself for a bit. Something I hadn’t done in a long time. I chopped my hair off, got glasses that I had been avoiding for 10ish years, got myself into shape and started delegating jobs around the house so I didn’t feel so overwhelmed. It was the scopes in June that it hit me. I was feeling really good about life then I got the phone call that they had failed their scopes. I’ll never forget the feeling I had after that call. It hit me like a ton of bricks. Sort of like a back to reality hit. I cried and was really upset, more than I normally am. It really got me thinking and I’ve had a million conversations in my head the rest of the year.

I think I’ve entered the next phase of a mom with chronically ill children. The first phase was figuring everything out. Not it’s just a this is life, forever, phase. The reality is, it’s really sad. Do other moms like me go through these phases as well? It’s exhausting to think about. I don’t know why, but I feel really emotional now about the kids when it comes to EoE. Maybe my mind was so occupied before trying to figure everything out that I didn’t really see this lifelong disease for what it is. Now that I seem to have a lot more knowledge I can see the LONG road ahead of us. It seems like yesterday that Gage was diagnosed. It’s been 6 years. It flew by so fast.DSC03429

I’ll never forget the first few videos about EoE I watched in horror thinking that will never be my kid and we’re going to beat this. Boy was I wrong. Maybe that’s also part of why I feel the way I do now. I am exhausted from hearing blow after blow for them when it comes to more Ige allergies and more failed scopes. I know that’s how it’s always going to be. Today when I told Nathan about Gage’s scope results and how I just can’t quit crying for him he told me “Gage is strong. I need to get it (crying) out of my system and be strong again for him.” He also said “You are much stronger than you should be asked to be.” He’s right. That makes me wonder, maybe I’ve just held all the tears in for 6 years and I just can’t anymore. I don’t know. It feels like I’m somehow on the other side of things now looking in. Does that make sense? Maybe this seems silly to some for me to share all of these emotions, but there may be another mom out there wondering and feeling the same as I do. My blog has always been to help others stay positive and keep going. I have hopes to let other moms know, they’re not alone and that I’m not some wonder woman. I have feelings too. I’m going through my own journey as the kids face a chronic illness.

I do know that we will move forward as we always do. Gage and I will probably share some tears tonight. Tomorrow is a new day and this is our life. We will focus on something happy, like our upcoming vacation, and push the bad aside. Please lift Gage up in prayer that he has the strength to keep moving forward with a positive attitude. I know that God will give you, at times, more than you can handle. That’s when you lean on Him for guidance, strength and all you need.

Isaiah 26:4

Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.

If you have a $1 or two to spare, please donate in our name to CURED and help us find a cure so one day Gage, Charlie and Tinleigh can eat food again.

February 2, 2016 Posted by | Gage's allergies, LIVING | , , , , , , , , , | 7 Comments

Beef Pass

Charlie and I took a trip to the GI doctor for a scope and got to spend about 12 together. We had a good time. He talked my ear off about things like the planets, how to create a magnet that would push away eosinphils so kids with eoe could eat again and how he plans to be in the military one day. It was my birthday so he and I got to actually go out to eat at a restaurant just the 2 of us. It’s amazing to watch someone at a restaurant for what they remember as one of the first times. The menu was super overwhelming for him but he insisted on navigating through it alone. I let him. He finally closed the menu and said I’ll have a pancake. Puzzled, I asked him why just a pancake. He said well I would really like the quarter pound bacon burger. I smiled and told him to go for it. He said but it’s $9. I assured him it would be fine this time. 20151221_185545.jpgHe gave it his all but wasn’t able to finish. My heart was full just watching him eat it.

The next morning we arrived at the hospital bright and early as usual. This day Charlie refused the loopy medicine they give them before hand. He was going to try and stay awake through the whole procedure this time. He makes me laugh. 20151222_090555.jpgNeedless to say he failed his mission of the day.

When the doctor came out to talk about Charlie’s scope he sat down beside me and touched my arm. I instantly had an uneasy feeling. I also wanted to tell him if he had bad news to just give it to me, I can handle it. He told me there was no sign of EoE. Then he showed me Charlie’s esophagus pictures. 20151222_193752.jpgMy heart sank. Something is definitely wrong. What is all of that? The Doctor wasn’t sure. Fast forward to today I got a call from our GI. As the GI who preformed the scope had said there was no sign of EoE and Charlie’s counts were the same as they were back in May, 1-2, meaning beef is a pass. HURRAH! Now, onto that mess. They don’t know what it is. They checked for Barrett’s esophagus. That came back negative. For it to be Barrett’s he would have to have stomach tissue in his esophagus. Charlie just has esophageal tissue. Barrett’s esophagus typically occurs in people in their 50’s and 60’s that have untreated reflux. Charlie is on a high dose of reflux meds and has been for quite some time. The doctor wasn’t sure if they’re watching Barrett’s esophagus develop or what’s going on. They had never actually watched it develop in someone. We don’t want it to be Barrett’s though. Barrett’s can lead to cancer. Our plan is to let Charlie trial another food, either shrimp or eggs. He is currently eating eggs baked in things but not scrambled. He is scheduled for a scope at the end of March. We also upped his reflux meds. Even though he is on a high dose, upping it can’t hurt. Switching to another medication won’t make a difference. If he is developing Barrett’s it can be painful, we want to minimize that.

Could all of that stuff go away by his next scope? Yes. In that case we may never know what it is/was. So now we wait. I am to listen to Charlie for complaints of more chest pain, reflux symptoms, etc. He has no clue any of this is going on inside of him. Since we have no answers we don’t want him to worry or imagine symptoms he doesn’t really have. The doctor told me to put it in the back of my mind and not to worry about it. Yeah, right. We’ll see what’s going on and hopefully have some sort of better answer after his scope in March. If it’s still the same in March with the same biopsy results then we’ll check him every 3-6 months after to keep a close eye on it.

When I told Charlie today that he passed beef Gage was in the room. Gage started crying. He’s having a rough time still wanting all food. I think my plan of teaching them to be happy for one another was a good one, but in our reality can’t really happen. Gage wasn’t mad Charlie passed, he was just hurt it’s not him passing foods.

Say a little prayer for both boys please. 1 016

 

December 28, 2015 Posted by | Charlie's allergies, Gage's allergies | , , , | Leave a comment

Helping hands

The evening I had posted my last post, about finding a new church, I received an unexpected phone call. It was someone from the church. It was a very important person from the church, the Pastor’s wife and children’s ministry director. Completely caught me off guard. Through the grapevine she had heard about my post and read it. She felt it in her heart to call me right then. Let me tell you, I really felt grateful for that phone call.

She didn’t need to call me.

She could have ignored the whole situation.

She wanted to know our story and wanted to help. They wanted to make their church a safe place for my kids.

As you know, I am a HUGE advocate for my kids. However, I’m not one to walk into someplace new and say hey you need to change this and this just for us. So I did feel a bit awkward explaining what my kids can and can’t be around. When we were finished talking I felt so much love, hope and excitement that they wanted us to come back. More importantly they wanted it to be safe for us. They really wanted us to give them another chance. I knew in my heart that it was the right thing to do. The very next Sunday we went and this is what I saw. wpid-20150927_120025.jpgAs a matter of fact there is now no food allowed in the room Tinleigh is in. I could have cried. They didn’t need to go out of their way to make changes for us, but they did. That’s just HUGE! We’re just some little allergy family trying to find a new church home.

A number of times during the week the Pastor’s wife and I messaged about things that are okay and things that are off limits. I would smile every time I saw a message from her. Warmed my heart. I am enjoying sharing my knowledge that may help them to keep another allergy child safe in the future. I even had another mom that attends the church reach out to me who’s son also has a feeding tube. It’s nice to make those types of connections with people who know a little about what life maybe like for you.

I spoke with a number of people in charge of different positions at the church when we were there on Sunday. They all knew of our situation and all wanted to help us feel comfortable. They did. I felt so at ease and also excited, because I had helped a whole new house understand our allergies and how to help keep my kids safe.

I have learned a huge lesson through this, the hard way.

I’ve learned that I can’t just say she’s allergic to everything. That’s way to vague and leaves everyone wide open for disaster.

I’ve learned Tinleigh is VERY allergic to wheat. Those small reactions I’ve seen while she plays with play-dough could end up very bad. Wheat will probably be a food she never gets to eat again. I’ve also learned that a food she once wasn’t allergic to can become a huge allergen for her. Probably holds true for Gage and Charlie as well. SCARY.

I’ve learned that it’s okay to say “Hey, while we’re visiting today would you mind making a few changes?” People do want to help, they do want to keep my kids safe. I’m not being out of line by asking. If they don’t try to accommodate, then we’re probably in the wrong place.

I’ve learned there are still many people out there that want to help and do care.

wpid-20150928_132811.jpg

Please pray for Gage and Tinleigh this Thursday. We will be making a trip to see the GI doctor and they will be getting scoped to see if we have things under control enough to move forward with food trials. Gage had to remove sweet potatoes and broccoli. We also started him on a medication for reflux. His last scope numbers were as bad as right before he got his feeding tube. If he’s not better this time then we have a big problem and his disease is out of control again, which will mean we have to start removing foods we thought were safe. Tinleigh got to keep sweet potatoes and oranges. She also started a medication for reflux. If her biopsies are bad then she looses sweet potatoes and oranges. This is one of those huge scopes that I am so worked up about. My nerves are about shot. I worry so much about how it will effect them, especially Gage, mentally. He wants to move forward SO BAD. EoE sucks, we hate it. Please pray for a cure. wpid-20150823_184703.jpg

September 28, 2015 Posted by | LIVING | , , , , , , , | 1 Comment

Scopes x4

We scheduled all four kids to be scoped on the same day. Our crew filled the 4 spots the hospital would do that day.

The night before we made the 3 hour drive to the hotel. We set up a formula bar.camera 081Fed everyone a snack and attempted to settle in for the night. IMG_0724Layton luckily went right to sleep in her pack’n’play. Tinleigh slept with mom and I. Nathan and the boys took the pull out couch. I think Nathan got the short end of the stick as I noticed Gage basically slept on top of him all night.

We had to get up bright and early. I tried to keep track of the times things happened and do a blog post that way, it ended up too crazy for me to keep going back to log things in.

Here’s as far as I got

4:30am up and at em
4:37 i put my makeup on by the light of the microwavecamera 090
4:45 mom broke her diamond necklace in the dark hotel room and the diamond flew off
5:00 woke up kids
5:15 found missing diamond
5:30 headed to hospital
5:50 checked in all 4 kidscamera 099
6:20 got called back to our roomphoto 2
7:15 Layton got loopy medscamera 098
7:35 Layton went back
8:05 Tinleigh got loopy meds
8:10 Laytons done
Tinleigh went back
Gage got meds
9:07 Gage went back

After this I wasn’t able to keep a log. Once Gage went back Layton came out. Mom and I headed down to be with her and could hear her yelling as we rounded the corner. I knew I had another little Tinleigh on my hands. We walked into her curtain area where one of the nurses was trying to hold her as she screamed and tried to wiggle away. She was fired up. I noticed something in her mouth. I quickly asked what it was. The nurse said a goldfish cracker. WHAT?! I said don’t those have dairy in them? I don’t usually buy them because my other kids are allergic to them. The nurse looked at me and said no it’s just wheat. We scooped the cracker out of her mouth anyways, they handed her to me and then they all left. I grabbed the bag of crackers and sure enough there’s milk in the crackers. I looked down at Layton and right there around her ankle is her little allergy bracelet with one work on it: MILK. I was pissed and nervous all at the same time. I was trying to calm her down, watch for any signs of a reaction and trying to figure out in my head how to handle this situation with the nurses. Her regular nurse came in and I told her in a calm manner the crackers do have milk in them. I then told her if this would have been Tinleigh she would be having an anaphylactic reaction. The nurse went and said something to the pacu nurses about their mistake. I left it at that. Luckily Layton was fine. I called the patient advocate line the next day and took care of the situation. photo 5I then asked the nurse for a glucose bottle for Layton in hopes it would calm her. That’s what always worked for Tinleigh. Sure enough it worked for Layton as well. Layton didn’t like the heart monitors, her IV or the blood pressure cuff. She just wanted it all off. So we keep giving her little bottles of water and turned on the tv. I was able to keep her a little more calm until it was time to unhook her from everything. Once she was finally calm Tinleigh came rolling into our recovery bay. photo 4Tinleigh has a history of waking up crazy mad. The doctor now gives her a little something to calm her down. It works like a charm. She woke up happy and mellow this time. She saw Layton’s little bottle and instantly wanted one too. She may be 3-1/2 but if it keeps her happy then so be it. We entertained the girls for a while and then Gage came out. photo 3We propped him up in a chair and he was quiet and content. Didn’t want bothered only wanted some sprite. Layton was starting to want to run around by this point. So we found a wagon and took the girls for rides up and down the hall. It was still early in the morning and we were the only ones in the whole recovery area. photo 1(1)Finally Charlie came out. We propped him up in a chair as well.camera 171They boys sat drinking sprite and watching tv.  No one got sick. No one threw a fit, except Layton. It was a good day for scopes. The doctor came and spoke to us once everyone was done. Everything appeared good in each of them. Tinleigh had one little spot that looked like small ulcer so they biopsied it. Other than that all the inflammation was down. We know not to get our hopes up because that doesn’t always mean they’re eosinophil clear but it is a good sign that things could be better. We left the hospital by 12:30. We were all exhausted but it was over, we did it.

Friday afternoon I got a call from the doctor. Results were in. I felt numb. She asked who I wanted first. Layton of course! Guess what Layton scoped clear! She may also start on dairy. I couldn’t believe my ears. I think I’m still in shock. Does this mean she’s cleared for life? No, not really. She is on all food at this point in time and is scoping clear. It could flare in the future. We’ll pray that she doesn’t. Charlie was 4 before he started having issues and he was on a regular diet until that point. Let’s think positive though. IMG_0737Next up were Charlie’s results. He was clear all the way through. There were no more eosinophils in his belly either. We had removed soy and started him on reflux medication. The eosionphils in his lower esophagus were gone also. So we will keep him on the meds and off of soy going forward. Even though he doesn’t show any allergic reactions to soy his skin and blood test for soy are huge. So in this case allergy testing does work for him trying to figure out EoE. Charlie is going to trial beef next. He hasn’t had beef since he was 4 and that was the food that set everything into action for him as far as allergies and EoE go. He can only eat pork and fish right now and really needs another protein. Chicken is a trigger and he keeps testing positive to shellfish so beef it is. Fingers crossed he doesn’t have an allergic reaction. camera 039

Gage’s scope was better. All of his inflammation and furrowing were gone. So the removal of corn helped clear things up. However, he was still showing 10/12 eosinophils in some areas. Gage has always had a lower number of eosiophils since having a feeding tube. The highest it’s ever been though is a 9. We don’t want to see these numbers in a steady climb. Cauliflower was the only thing he was trialing. I mentioned to our doctor he has been complaining of his throat burning. So we are going to let Gage keep cauliflower and start him on reflux meds. We are hoping maybe he has some reflux going on and this is why he’s showing low numbers of eosinophils. We will let him take the meds for 2 weeks before letting him start a new trial. His new trial will be broccoli and watermelon. We will scope him at the end of July. photo 1

Tinleigh failed her food trial this time around. Although she didn’t have any visual signs of EoE her numbers were 10/20. So we have to remove bananas and squash from her diet. The doctor is letting Tinleigh keep Enjoy Life Chocolate chips because they are just cocoa. We are going to pull these 2 foods from her diet for two weeks then she will trial oranges and sweet potatoes. Tinleigh will get scoped at the same time as Gage.

For both Tinleigh and Gage if they have high numbers at their next scope we will have to dial things back and get them to a clear scope before we can continue to move forwards. So i’m really praying things straighten out for them these next two months.

We’re very happy with how things are going for the kids.  A little sad Tinleigh has to take away bananas and squash but she still gets to move forward. It’s all just part of how crazy this disease is.

May 30, 2015 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

Keep the formula flowin’

I make 96 ounces of formula each day, not including what Layton drinks. I have made this as simple as possible so that I’m only mixing it 4 times a day. It’s super easy and quick.

I bought a small pitcher, measured 7-1/2 ouces 4 times and dumped it in. I then drew a line on the pitcher where the water settled.
image

Next time I will only have to add water to the line, no measuring.

I then dump in the formula which is 28 scoops. karas camera 532Now it’s time to mix.

I found a hand mixer at Walmart made by Hamilton Beach. karas camera 533I am shocked I haven’t burnt up the motor yet.

This batch will last for 2 of Gage’s feeds or one of Gage’s and 2 of Tinleigh’s.

karas camera 534I keep a corner in our kitchen just for the kids supplies and meds. There’s really no sense in hiding it away in cupboards because I’m constantly using it. During bad times the perimeter is lined with prescriptions and breathing treatment meds. This picture is on a good day, just the basics.

December 29, 2014 Posted by | daily life, LIVING | , , | Leave a comment

Nippy Twinkle Toes has EoE

Nippy is our elf.

With  heavy heart I learned he has been fighting a silent battle with EoE.

We had no idea.

I thought the rosey cheeks were normal but turns out it’s eczema.

wpid-20141215_212743.jpgHe wears gloves to cover the scaly skin he has on his little elf fingers. wpid-20141215_212605.jpgHis diet consists of candy, candy canes, candy corn and syrup because he’s allergic to everything else.

Poor Nippy.

He definitely chose the right family to join.

Last night Nippy Twinkle Toes underwent surgery and he received a feeding tube just as Gage and Tinleigh did. His EoE was out of control and they couldn’t get his numbers down. We are really praying for a clear scope for Nippy come March.wpid-20141215_222503.jpgwpid-20141215_222526.jpgwpid-20141215_222547.jpg

We wish Nippy the best of luck.

Check out Cradle the Moon for your elf bookbag.

December 16, 2014 Posted by | LIVING | , , , , , , | 4 Comments

Two year tubie anniversary

karas camera 053Two years have passed since Gage had his tube placed. It seems unreal to me. I have a 6 hear old with a feeding tube. Never in my life did I imagine that happening.
Gage is now over 50 pounds. If I remember correctly, he’s gained almost 20 pounds in two years. As a baby and toddler, before all of this started, he was always in the 70% range for height and weight. He dropped significantly when we had to start eliminating his diet. I’m so happy to say he’s back to 70%.karas camera 770He and I had a quiet moment alone tonight. I told him it’s been 2 years. I asked him how he felt about his tube. Shockingly, he said he likes it because he doesn’t have to eat. Then he giggled. I said you don’t want to eat? He laughed and said no, I like to eat, but doing a bolus is so fast. Then I don’t have to sit there.  I’m so happy he’s at peace with it. For quite a while he always said he wanted it out. I’m sure he still does, I didn’t ask him though.karas camera 1070He’s been trialing corn since June. I think it’s going fine. He doesn’t have any symptoms and doesn’t appear to have an Ige allergy to it. He will be scoped in January to see if it’s a pass or fail. Gage was at 7 foods on his one year anniversary. He’s now eating: green beans, strawberries, blueberries, lemons/limes, oranges, rice, tapioca, cocoa, black olives. Fish is up in the air and he’s trailing corn. So he hasn’t added much. He had one pass last year then one fail. So he had to remove those trial foods which were pork, tomato and cherry. We got him back to a zero count scope before starting corn. Since moving and finding new doctors he’s been trialing corn about 6 months which is way longer than usual and another reason we didn’t get to add much this year. karas camera 286 karas camera 269Gage has had a few strong Ige related problems since we moved. First one happened this summer on my parents farm. Gage went for a ride in one of the farm vehicles. They had been planting soy beans. My kids have been around the farm plenty of times and never had an issue. So off they go then back comes Gage. Swollen eyes and coughing horribly. karas camera 146 karas camera 145It is safe to assume now that he has a strong soy allergy. We had never had this problem in the past. Allergist did tell me that once removing things some allergens could become worse if he comes in contact with them. Gage’s peanut allergy has also become worse since diagnosis. We showered him down, gave him Benadryl and an albuterol treatment and he was ready to go play again. No more vehicle rides though.karas camera 445Another reaction Gage recently had was to salmon. That was horrible. We still haven’t tried any fin fish again. I think we might do it at the allergists office. karas camera 344Overall Gage has not let this tube slow him down. He’s still LIVING life to the fullest. Sure we’ve had our moments of he wants this or that. “It’s not fair.” “Just let me try a little bit.” “No I don’t want a book bag/bolus.” Those are the crappy times we are going to have while we fight this battle. It breaks my heart every time I have to tell him no and be a stern mom. It’s my job though to keep him healthy and safe.

While we moved across a few states this summer we got the meet a special little tubie friend whom I had only met on Facebook. It was very exciting for them all to see each other and know they’re not the only one. karas camera 1276Gage played on the beach karas camera 1274Had a shaving cream fightkaras camera 1266Swam in a lakekaras camera 040Had a bonfirekaras camera 136Flew on a planekaras camera 197Swam at the local poolkaras camera 113Exploredkaras camera 034He even got to go out to eat!karas camera 199He went trick-or-treating

karas camera 1183He traded in his candy for a new toykaras camera 1181He is LIVING!!

karas camera 347These four kids are so lucky to have each other. They love one another. When it comes to food and this darn disease, they have so much compassion for each other. They comfort one another, they help give explanations and hope when food is present they can’t eat. They talk about needles, shots and IV’s. They talk about “one day I’m going to eat”. I hate they go through it, but I’m glad they’re in it together.

Together, Gage went another year with his tube!karas camera 041

December 5, 2014 Posted by | Gage's allergies, LIVING | , , , , | Leave a comment

On A Dime

I had a great day today. Scrubbed the kitchen. Switched Layton’s wardrobe up a size. Organized the laundry room / mud room. The girls were happy all day, and so was I. Layton discovered her screaming voice. 20141117_154232Tinleigh stayed out of daddy’s camo paint. We picked the boys up from school and everyone was in a good mood. Great day all around. We continue with our typical routine for the evening. Boys get a computer turn. They do homework. They eat dinner. Nathan comes home. Total daddy excitement is in the air. They play, shower and eat some more. Typical.

We’re going to back up though to the part where the kids eat. Tonight Gage asked for salmon which he’s been eating since October 2013. I cooked him up a fillet in his butter and served it to him. I then went about my evening as usual. He didn’t say a word, but once Nathan was home I noticed he didn’t finish it and had left the table. Tinleigh had been begging Nathan to eat.  He agreed to make her some pancakes and Gage chimed in that he wanted some also. Gage was helping Nathan cook and he asked me if I had fairy godparents what would I wish for. I waved my hands over his body and said I would wish that you don’t have allergies anymore. He replied “and no button too?” I said of course no button! I then noticed his upper lip was red. I took a closer look and asked him if it was itchy. Nathan slightly shook his head yes. Right then, my day turned on a dime. I then noticed a spot on Gage’s chest that had a bump and was all red from him scratching it. Gage didn’t want to but said yes he was itchy, then quickly tried to think of something other than the fish that it could have been from. He told me it was from the corn chips that he had last night. I went for the Benadryl but as I did Gage accidentally burnt his knuckle while helping flip the pancake. Off he went to the bathroom to run water on it. Nathan went in to check on him and I could hear Gage was upset. Nathan returned and sent me in. Poor Gage, his little eyes were all red from crying and he told me his eye itched. We went to the couch and I got some medicine for his little burn. While we sat there he said “Mom, I think I’m allergic to fish” then the tears came. OH THIS SUCKS!!!!! So I held him and tried not to get upset too. It’s been a year that he’s eaten fish. Why now? Why do their little bodies play these cruel games? I tried to be reassuring and told him that sometimes you can be allergic to one certain kind of fish but not other kinds. Which is true. So we’ll have to try a different type in a few weeks. We’ll give his body a chance to relax a little. It’s just so frustrating though, sad too. PAUSE………… (coughing in the distance)20141117_200241

I ran upstairs and Gage was continuously clearing his throat and coughing. I asked what was wrong. He said his throat was gunky. I asked if anything else was wrong and if he felt worse. He said yes. That sudden flash of panic rushed over me. Oh shit he’s having a delayed reaction. It’s been a good 2 hours since he ate the salmon. This is after the dose of Benadryl an hour ago. Okay don’t panic mom (in my head) we’ll just give him some more Benadryl. So I give him another half dose. He keeps coughing and clearing his throat so I ask him some more questions without suggesting anything. Don’t ever ask direct questions like does your throat feel like it’s closing. Let them describe it to you in their own words if they’re old enough. It’s still gunky and a little tight because it’s gunky. Nathan and I have a quick huddle and decide to give him an albuterol nebulizer treatment. Yes, of course I’m still panicking. That’s what a mom does. Nathan assured me that if it was really bothering him he wouldn’t be sitting there calmly playing a video game. He says this from his MANY experiences. I agreed. So I sat through the nebulizer treatment watching him like a hawk. Things seemed to be improving. His actual respritory system wasn’t effected or we would have immediately given him the epi pen. We did the nebulizer as caution, preventative. As for now he’s okay. I’m thinking though we won’t be trying any other type of fish until a long conversation with the allergist or some testing. I’m not willing to take that risk.

Dear Allergies and EoE,

I HATE YOU.

Forever,

Kara

November 17, 2014 Posted by | daily life, LIVING | , , , , , , , , | 4 Comments

%d bloggers like this: