LIVING

With EoE, Allergies, Asthma and a G-Tube

2016

In January I took all 4 kids to see the GI, that was an experience.

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We know now what we’re doing with each one for the year.

Charlie: he is currently trialing shrimp. We thought it was going well until he had a reaction at dinner. Not a major one. Itchy bottom lip, itchy fingers and the outside of his throat was itchy. We will try it one more time to see if maybe there was some cross contamination with that bag of shrimp. Charlie will be scoped in March as long as we continue trialing shrimp. Next trial will be eggs, as in scrambled. He already passed eggs baked in things. After that he’s pretty much done. There isn’t anything else on his do not eat list that he doesn’t have and Ige reaction to. We will also be keeping a close eye during scopes as to what else is going on in Charlie’s esophagus.

Gage: He will continue food trials. He hasn’t grown much this past year and GI is concerned a bit about that. So we’re going to give him until June in hopes he’ll have a growth spurt. If he hasn’t grown much more then GI wants to look at his growth hormones and make sure everything is in check. His feet just grew a ton so I’m thinking he’s about to shoot up a few inches soon.

Tinleigh: Since Tinleigh’s last horrific scope we are going to let her go at her own pace. The doctor had a sweet talk with her and reassured her that everything will be fine. She told her that when SHE decides she wants to be scoped so she can move forward trying new foods then we will. Tinleigh is currently trialing black beans and it seems to be going okay.

Layon: She is such a picky little eater and some days won’t eat hardly anything. GI wants me to just treat her as a picky eater for the next 6 months. Keep introducing foods over and over and over. Do not let her graze and sit her at the table 5-6 times a day to eat. If she’s not eating in 6 months we may scope her again. Her favorite food right now is ice chips. She chews things then spits it out. It’s frustrating to have a “normal” toddler. Of course in the back of my mind I worry she has it. However, I have to try and stay positive and believe that she doesn’t.

February 2, 2016 Posted by | Charlie's allergies, Gage's allergies, LIVING, Tinleigh's allergies | , , | Leave a comment

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

Lunch please

Shaving cream fight

Shaving cream fight

Charlie has basically been on the same foods for a couple years now and successfully had clean scopes. One could say he is in remission. Charlie can eat wheat and dairy which are huge in our diets. What Charlie is lacking is proteins. I am at a loss for something new to pack in his lunch. I need some ideas! Please help him.

Here is his current do not eat list.

peanuts

tree nuts

soy (he does eat little amounts, such as if it’s the last ingredient in bread. I’m not talking soy lecithin either, I mean soy flour. Tofu? No way)

sesame

celery

peas

deer

beef

turkey

chicken

scrambled eggs (he can now eat eggs baked in things as long as it’s minimal)

pineapple

the melon family which includes pumpkin

banana

shellfish

froglegs

His list really isn’t bad at all. But he won’t eat chips or pretzels. He’s sick of apples. He’s sick of sun butter. He’ll eat pudding all day long but that won’t sustain him. Any ideas are welcome!!

 

September 14, 2014 Posted by | Charlie's allergies | , , , | 6 Comments

Happy Birthday Charlie!

Happy 8th Birthday  Charlie!

ry%3D400We had no idea what we were in for OLYMPUS DIGITAL CAMERAYou are full of life!OLYMPUS DIGITAL CAMERADefinitely all boyDSC02615Very much a little scientistDSC04683I love to listen to your thoughts and ideas. Always thinking outside the boxDSC05729I hope you know how brave, intelligent and loving you are.

DSCN1232I hope you forever keep those qualities.

DSCN3326I am so excited to see what your future holds. IMG_00000085For now, please just stay little.

January 27, 2014 Posted by | Charlie's allergies, Life according to Charlie | | 2 Comments

Dinner

What do my kids eat for dinner?

Tonight is a good example. I tried to match up what little I could just to make it easy on myself. DSCN3893Tinleigh’s plate is up top: ketchup, blueberries, green beans, pork burger cut up, her special french fries.

Gage: black olives, blueberries, pork burger and green beans. He will get hooked up shortly after to complete his calorie needs. He often says he feels full after a few bites, common in EoE kids.

Charlie: black olives, pickles, green beans, french fries and pork burger.

Tonight’s was easy, I didn’t let any of them give an opinion on what they wanted. 😉

DSCN3894Ten minutes in and Tinleigh has tasted everything. Is now bored and picking her nose. She chews then spits things out. Pretty sure it hurts her to swallow. This is how its been for a few weeks now. DSCN3895This is what the boys finished. Charlie left his pickles. Gage only ate his blueberries and a few green beans. So frustrating. He can finally eat and won’t. Swears he’s full.

DSCN3896Tinleigh ended up with a smoothie popsicle I made last night. She’s chowing on that. Popsicles are her favorite right now. She’ll be screaming hungry in a half hour as usual.

Damn disease.

January 2, 2014 Posted by | Charlie's allergies, daily life, Gage's allergies, Tinleigh's allergies | , , , | Leave a comment

Something’s fishy

It’s been a great summer. The only epi pens used were on Nathan. That’s just stubborn him going out to lunch where he probably shouldn’t.

We attempted a triple scope day this summer. Couldn’t have gone better. 20130815_142150The results of that day is where we are now.

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Charlie was clear. We had removed chicken from his diet. That did the trick. So his only meat was pork. We decided to give fish a try. He had never had it and went both ways on allergy testing for it. After a four-hour food challenge at the allergist’s office we are happy to announce Charlie is trialing fish! He LOVES Gorton’s fish sticks. I love how easy they are.IMG_20130930_105929

Gage’s scope results from that day were wonderful as well. Gage is now up to seven foods: blueberries, rice, strawberries,lemon, cocoa, tapioca and green beans. We really wanted to add a protein to Gage’s diet. The only thing we had left was fish. So after a negative blood test he did the same four-hour fish challenge at the allergist’s office. Let’s briefly touch on what happens at a challenge with such a highly allergic food. I bring the fish of choice ready to go. They first do a skin prick test with the fish that I bring in. Next they rub fish on his lips and leave it sit for 15 min. In the mean time I’m sitting there watching him like a hawk making sure there are no hives, coughs, itches or anything that looks like a reaction. They then have him try to hold a little piece in his mouth for 15 minutes. After that, they give him bites to eat every 15 minutes. Each bite increases in size double of the previous bite. Each bigger bite results in my nerves climbing through the roof wondering “is this the bite that will set him off into a reaction?” It’s very exciting each time we hear the timer go off, no sign of a reaction and they come in with another bite. Very exciting for a little guy who loves to go fishing but has never had the pleasure of tasting it. The mom side of this is absolutely nerve-wracking. Imagine feeding your child something you have done your best for the last 5 years to keep away from him. Lots of praying went on in that room. There were no tears allowed. It was Gage’s exciting day, this mom wasn’t going to ruin it for him. I’m not sure how I made it through that day, or Charlie’s. I did though, and so did they. Now they both get to eat fish. Gage doesn’t get to enjoy the Gorton’s fish sticks. However, I have found a wonderful rice flour based tempura I can use to make him fish nuggets. He loves them.  I love that he loves them.IMG_20130924_165944

The results of that scope for Tinleigh were horrible. On the highest dose of steroids she was still very inflamed and with high eosinophil counts. So we removed the last of the grains and meats which were rice, oats and pork. Our hopes were to get her to  drink more elemental formula. The pressure was on. I managed to start getting 26-28 oz a day down her. Which was great because with not much left for her to eat I couldn’t figure out what to feed her. Then she caught a cold and started throwing her cups of formula back at me saying YUCK!! Now she will only drink the unflavored mixed with some coconut milk in her bed in a bottle. Don’t worry, we’ve seen the dentist and her teeth are fine. We recently had her scoped again. Results were confusing, she had less than one in the mid and upper esophagus. Her lower esophagus was actually worse than last time, more than 50. WHAT?? How is that? We’re hoping that its reflux. Although that’s a high number for reflux. So we are starting her on a reflux med and will scope her in 8 weeks. We are also going to do a fish trial on her. Since she’s stopped drinking as much formula we need to get something else into her. Do I agree with this plan? Not 100% I don’t like her on the steroid, all we’re doing is masking anything that may still be effecting her from her diet. I hate adding foods when on steroids. Again, the steroid just masks problems. However, she doesn’t have enough food to thrive. She’s two, she has to grow. I did manage to help her gain some weight while I was getting her to drink the formula. In my perfect world we would add the reflux med, stop the steroid and re-scope in 8 weeks. That wold be the real truth of what’s going on with her.DSCN3424

So my kids are now eating fish, Tinleigh will trial it tomorrow. Who would have thought I would ever be preparing fish for these three? I’m so happy that its working out. I just hope and pray the scopes in December are still good.

October 8, 2013 Posted by | Charlie's allergies, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | 3 Comments

Charlie’s test

Charlie had his turn at the allergist. I hate putting him through it. He absolutely fears needles. He’s had some bad experiences that are just forever in his mind. The night before I told him we were headed to the allergist in the morning. He started crying. I told him Tinleigh did it and Gage did it. I also told him Gage didn’t even cry this time around. Which, he didn’t, but they did it on his arms and there weren’t too many. Gage assured Charlie it wouldn’t be bad. They always try to comfort one another with kind words.

After dropping Gage off at school Charlie and I made the hour drive to our new allergist. Daddy kept Tinleigh because I knew it probably wouldn’t be fun in a tiny room with an upset Charlie and screaming Tinleigh.

We arrive at the office and are called back to the room. Charlie is talking the nurses ear off as he usually does. We get in the tiny room and he freaks. We assure him the needles won’t happen quite yet. Then I see the doctor. We discuss what we want to test for. He leaves the room and Charlie makes his move. I knew he was scared and I didn’t blame him. I promised him a milk shake when we were done and we talked some more about Gage and Tinleigh being brave when they did it. He came out on his own. Thank goodness. The nurse comes in with trays of vials. My stomach dropped. She asked Charlie to hop on the table and take his shirt off. There were too many to do on his arms. Then my chest got tight. She showed Charlie on his hand what she was going to do. He begged to see the needle. I explained she had to keep it clean until it was time to use it. We got him on his belly and I asked her if she had a friend to come help. I knew someone would have to hold his legs. She quickly grabbed a friend and went to work. Charlie was so nervous, he kept trying to peek over his shoulder. We assured him she wouldn’t get the needle out until she tells him. I had the dvd player right in his face to try to distract him. It didn’t work. Then it was time. He had 66 drops of liquids on his back. That meant 66 tiny needle scratches. I held his little shoulders down and she went to work. It was horrible. She worked quick though and got it done in maybe 30 seconds. He begged her to stop and give him a break. I was glad she didn’t, I don’t think he would have let her finish. Wow did he welt up. We retested him on every inhalant. That would be trees, grasses, molds, animals and dust. He is allergic to EVERY inhalant but one mold. EVERYTHING. The only foods we tested him on that he’s currently eating were chicken and oats. Chicken was positive, as it was before, and oats were negative. Beef and soy are now negative which was a shock. Eggs are now testing positive, when in the past they were negative, but he doesn’t eat them because of getting hives. All nuts and all fish are still positive, strange because he’s eaten lobster and shrimp just fine. It’s all a jumbled mess. So what do we do? His biopsy numbers are low and could simply be from the reflux he’s been having. Then again it could be from the chicken he’s eating and he’s starting to flare. Do we feed him beef when it made his lips blister before? What if beef is what made him flare in the very beginning?

It’s just all a risk. So Nathan and I decided we’re taking away chicken, keeping him on his reflux medicine and slowly reintroducing beef. We’ll keep him this way for the next 6 months and then re-scope him. If he starts having issues then we’ll remove the beef and get him scoped sooner. I won’t allow him to eat beef at school or a McDonald’s burger quite yet, but at home with mom and dad it will be allowed.

November 6, 2012 Posted by | Charlie's allergies | , , , , , , , , , , | 3 Comments

Zoo and Cheesecake

Day two was by far MY favorite day. My wonderfully supportive good friend Rachel drove her 3 boys two hours to meet us at the zoo! We haven’t seen each other since January of 2011! It was a much-needed get together. What better place to do it than a zoo where the boys could all run, enjoy the animals and burn their energy out.

The weather was perfect and everyone was in a good mood. That’s important on a long zoo day. Especially with 6 kids under 6. Rachel and I were able to catch up while the boys ran. My favorite moment that I actually missed was Charlie and the gorilla. There was a huge old gorilla laying on a box right by the glass. Charlie walked over, stepped up on the ledge and started pounding the glass right by the gorilla’s head. If I would have seen him I probably would have given him an earful. The gorilla took care of it for me. Rachel said that gorilla just reached its long arm out and smacked the glass right at Charlie’s head. Scared the crap out of Charlie and he went flying backwards off the ledge, that’s the part I saw. It makes me laugh just typing it. Charlie learned his lesson. I’m not going to bore you with a ton of animal pictures you’ve seen before at your own zoo.

It was a great day with a great friend and her sweet boys. Much needed. Thank you Rachel!

Oh, duh, food allergy blog what did we eat? I had brought some lunch meat then just a bunch of snack type things for the boys. I did our usual pack up with food bag, medical bag, diaper bag and I think that’s it. It was a little trickier being that I had to pack out of our hotel room and could only use what I had on hand. It worked though, that’s all that matters.

Now for the Cheesecake. Rachel suggested Nathan and I take the boys to the cheesecake factory for dinner. Their menu is huge and we should have no problem feeding them. I text Nathan to find a local one and we had our plans made.

This night I ordered myself a long island iced tea. Oh boy was it yummy and probably 2-3 years since I had, had one. It was not spilled. Rachel was right. They had a great menu with something for everyone. Charlie had a cheese quesadilla, Gage had a bread-less blt and some fruit, Nathan had a pizza and some kind of Asian dumpling appetizer, I had a chipotle chicken pasta dish, Tinleigh had some baby food and french fries. All was good PERFECT! I couldn’t have been happier, my tea helped that along. We asked them to remove the bread from the table so no one was bent out of shape about not getting to eat it. I even ordered key lime cheesecake to go. I felt a sense of calm knowing everything went so smooth. Thank you Cheesecake Factory!

We went back to the room and then went to swim for a while. The water was freezing but you know kids and water. So we left them freeze for a half hour then headed up for bed. We were all exhausted from the long day so going to sleep was no problem. Then around 5:30 am I woke up SO SICK. Lucky me, I got food poisoning. I knew it was a day too good to be true.

Day 3 – weird science. Stay tuned.

October 29, 2012 Posted by | Charlie's allergies, daily life, Gage's allergies | , , , , , , | Leave a comment

Our Big Day

Our goals for the day: have Tinleigh’s consult with the GI doctor and get both boys scoped.

By now the boys understand that on scope day you get sprite until a certain time and then nothing until after the doctor looks in your throat. It’s not a big deal. I don’t dwell on it and I certainly don’t eat or drink in front of them. They ask for something and I remind them the rule. They have never whined about it.

So up in the morning and plan to leave at 9:30 which happened to be the cut off time for sprite. Perfect. I give both boys a nebulizer albuterol treatment before we leave as the doctor suggests since they both have asthma. Gage’s always becomes asthmatic when they knock him out. In the truck we go with two boys buzzed up on sugar and albuterol and normal, loud little Tinleigh.

Everything was fine. We pull into the hospital an hour later and Gage pukes. SHIT. A million thoughts go through my head. This stuffy nose is actually the flu, his respiratory isn’t healthy which makes him puke at times, he’s car sick and oh my gosh are they even going to scope him now? Luckily it was only a little bit of sprite. I’m beginning to think he was just car sick. So we all hop out. I load up the stroller. Where’s Tinleigh’s pacifier? She had it when we got in. It’s lost.

Strike two.

We now need to buy Gage new pants and Tinleigh a pacifier.

We go to the GI clinic first for Tinleigh’s appointment. The waiting room was so crowded there was no where for us to sit. I’m thinking to myself this isn’t going to happen. So I very happily inform the receptionist we must be at same day surgery at 11:30. She smiles and says she will let the nurse know. So by 20 after 11 I approach the desk again to let them know we are leaving. “Ok Mrs. Root. I did let the nurses know.” I told her to let them know to come get us when our doctor is ready for her.

Off we go again, this time to same day surgery.

We are quickly called back and they give us just a huge area in the back instead of a tiny room. Thank you thank you thank you. So as the boys chat the nurses ear off she notices Gage’s pulse ox was only 92. Now I knew he had a stuffy nose but had not heard a bit of wheezing, I have a stethoscope. So I am almost peeing my pants worrying today won’t be Gage’s scope day. I wasn’t about to mention he had puked unless she asked me first. She then tries another finger and gets 93. Shoot!  She calls over another nurse and together they listen to his lungs. “There’s a crackle in his right upper lung” I explain he was stuffy yesterday afternoon but he does turn for the worse very quick. After we go through the pile of paper work, get the boys gowns on and we talk with everyone involved they decide to give Gage an albuterol nebulizer treatment. He did have a productive cough and cleared his lung so they weren’t too worried about him being too sick. Phew.

As we’re doing the paperwork a few nurses come looking for us from the GI clinic. They informed me we missed our appointment. I informed them we were there and they didn’t get us in on time. Nathan and Tinleigh left to go meet with the GI doctor. I sent him a quick text with all the information I needed them to go over. The conclusion of that meeting was that she has no problem scoping Tinleigh and will gladly do it whenever we want her too. She said with our history she has no reason to turn us down. She did put Tinleigh on a reflux medication so that if she does have some eosinophils we know it’s not from reflux.

With the boys happily watching a movie we get things in motion. A nurse brings in Gage’s albuterol treatment and hooks him up. In the meantime the doctor says let’s go I’m ready. Well they had Gage marked as going first but he’s not ready. Ok then let’s do Charlie first. Well the albuterol treatment won’t take long and Charlie’s not fully in the computer yet. We still don’t have anethesia here to have the parents sign papers. *sigh* In walks two girls, younger than me, but old enough to be out of college. “Hello Mrs. Root I’m with children services and I’m here to explain to the boys and show them pictures of what they will be doing today”  I jump right up “oh thank you but NO” I think I burst her bubble. I quickly explained that we have done this a number of times and the boys are completely comfortable with what’s going on. I just knew her pictures and explanation would only bring up a million questions. She was so flustered and didn’t know what to say. I said I was sorry but we have things just how we need them and I don’t need anything scaring them or creating bad images in their little heads. So then she asked if she could let them pick out their smell for the mask, I allowed her to do that. She smiled and went right to work. Both boys agreed on bubble gum. She marked it down and skipped away.

Nathan and Tinleigh came back at this point. Poor baby was starving and tired. So I turned her stroller so the boys couldn’t see and I begged her to eat baby food from the jar. She did! I couldn’t believe it but just shoveled it in hoping she wouldn’t change her mind. I didn’t pack her anything else. Anethesia showed up as well. We went over the boys allergies and our history of malignant hypothermia. With an egg allergy it makes it harder to administer the drugs because they typically use egg based drugs with MH patients. So Gage gets a very special concoction of things. We like to keep things interesting. Anethesiologist brings back the oral versed and gives it to Gage. Game on!

Over the next 15 minutes we watch Gage slip into silly world. Today though it makes him super sleepy. By now it’s 1pm and he’s had nothing to eat. So they get a wagon, Nathan puts him in it and off he goes. Here come my nerves!  Today I take on some lovely chest pains instead of butterflies. My anexiety has been so high lately it’s common. It typically takes about 45 min until the doctor comes to talk to us. I hate those 45 minutes. I don’t know how a parent waits when a child undergoes a heart surgery or something so major. My wait is so minor. Finally the doctor appears. He’s shaking his head no and I just start blurting out questions. First I asked if he was still all white and covered in eosinophils. The doctor smiles and says Gage doesn’t show any signs of eosinophilic esophagitis. WHAT? He said there were some slight striations but other than that his little esophagus looked normal. I ask again if there was any white patches because I’m just not sure he understood me. He assured me Gage looked great. Nathan and I high five. This is awesome! I was so excited.

As it slowly starts to sink in they give Charlie the oral versed. Round two!

Tinleighs getting antsy now. As a nurse passes by I asked where I could buy her a pacifier. I very well knew they had to have some somewhere for patients. Score! The nurse promptly brought Tinleigh a new pacifier. It wasn’t her typical kind so it took some getting use to.

The OR nurse comes to get Charlie after about 10 minutes. The drug hadn’t really taken hold yet but I said it was fine to take him. He was very relaxed. So he gets in the wagon. He starts getting goofy now and tries to hide. Away goes Charlie. We now get to move to the waiting room. Nathan goes to get us some food, neither of us had eaten all day and now its 2pm. About 20 minutes later Nathan comes in with our food. Just as we get started we’re called to meet with the doctor. Of course. So we head into the little room. He greats us with good news again! We couldn’t have been happier. About an hour goes by and I say “I hope Gage is ok”. We would usually have him by now. Just then the receptionist gets a call and yells “Parent of Gage”. I thought we would get to go meet him in recovery. Instead it’s a phone call from OR. Gage is still intubated. He’s having a really hard time waking up. He’s ok, just really sleepy. Not something I wanted to hear. So we wait another 20 min and they call us to go meet Gage in recovery, Charlie wouldn’t be far behind.

Tinleigh at this point was starting to get restless. I let her crawl around on the floor of every room we were in. She was exhausted but doesn’t like to miss a thing. I just knew the recovery room was going to be fun.

We meet Gage in the hall and he’s awake and happy to see us. He immediately shows me they put a drink in his hand again, IV. The nurse was laughing. She said the boys weren’t side by side in the OR recovery room but as soon as Charlie woke up and saw Gage a few beds down he yells “Hey Gage it’s me Charlie” and starts waving. The nurse said they kept talking to each other over the other kids in there. I can only imagine how cute it was. In the recovery room the kids get to chose if they want to sit in the recliner alone or have a parent hold them.  Gage chose daddy. His oxygen was only around 91 and that worried us. He wasn’t wheezing so we weren’t sure what was going on. The nurse said since we had to wait on Charlie she would let him sleep a little longer and give him some oxygen. He fell right back to sleep. Tinleigh is wanting every nurse to hold her. It was cute. Then Charlie comes in and the last kid leaves. We had the whole recovery area to ourselves. Charlie was more alert and ready to roll. He wanted me to hold him. So I did for a while. The nurse holding Tinleigh had to put her back in the stroller. Tinleigh was not a happy camper now. Luckily Charlie was fine with me getting up. I gave him the tablet and he watched a movie. I made Tinleigh a bottle and pushed her around while she drank it. Luckily she finally fell to sleep.

The nurse removed Charlie’s IV and he was ready to go home now. We still didn’t have Gage where we needed him to be though. He was responsive but so sleepy and still low oxygen. So after speaking with the anethesiologist the nurse said she was going to give Gage an albuterol treatment and we would see what that did for his oxygen. It brought it up to 94 and boy was he awake now. So they gave Charlie some pudding and I gave Gage one of his fruit pouches. After they ate the nurse said we were free to go.

We pile in the truck. I had 4 puke bags ready. I love those little green puke bags. Gage was white. Lips and all. So I didn’t have high hopes he would make it home with out getting sick. I put the movie on for them and we get on the road. An hour later we’re a mile from our house and Nathan stops at the gas station for some pop. I turn around and Gage is puking in his bag. 😦  Nathan jumps out and runs inside. Um, ok. I jump out with another puke bag and trade Gage for a clean one. It was his fruit pouch. All of it. He said he felt a lot better. I was glad he did but hate that it took puking to make him feel better. Once we were home Gage wanted to eat and drink water. The color was back in his lips now so I knew he was on the mend. He ate some of his millet bread and drank a little water.

That was our day, that was it! Well, not actually. My chest pain had radiated to my back. Right between my shoulder blades. I was so tight and tense by the time we got home it was almost hard to breath in it hurt so bad. I have got to learn some relaxation techniques!

Our day was chaotic, emotional and draining. We never did get Gage new pants.

Tinleigh will be scoped in December. We will have the biopsy results back for both boys next week. That will give us the true reading of what’s going on in them. I am still sort of in shock that Gage looks so good now. I honestly was preparing myself for the g-tube. I am so thankful our GI doctor gave me the opportunity to try one more food change before we had to do it. I am so glad I didn’t give up! It’s been a very hard food change but next week we will know for sure that it was the right choice!

You can buy this story on e-books for your kindle or tablet for just $3.99. lol  Sorry it was so long. Just getting all the details in there.

Now don’t forget to click on the Circle of Moms button and vote for me!

October 13, 2012 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING | , , , , , , | 2 Comments

School!!!

Both boys are successfully back in school. *big exhale* I could really use the little break, but at the same time if I don’t stay busy then I end up worrying about them all day.

This year things are a little different. Charlie knows the ropes and feels confident about staying safe. Gage’s pre-school has gone PEANUT FREE! Oh happy day!  Granted he’s still got 20+ other allergens he needs to stay away from but the nuts are what got us into trouble last year and I don’t want to revisit that, or worse. Just knowing the other kids won’t be having nutter butter cookies, crackers and peanut butter or bringing in a peanut butter sandwich just makes me smile. I actually smile when I think about that.

Breakfast: Gage oatmeal (cooked millet grain with sugar) and hot cocoa (coconut milk and homemade chocolate syrup warmed up)

Breakfast: oatmeal and hot cocoa (carnation instant breakfast and milk warmed up)

Don’t ask me what was wrong with Gage. Just right at that second he decided he wasn’t happy and wasn’t going to smile.

After comparing to last years pictures I realized they each grew one brick taller!

Both became a bit more handsome. 🙂

Little Miss doesn’t enjoy me waking her up on school mornings.

She’s happy to ride along though.

For all of you allergy parents and kids of special needs

“Here’s to a wonderful, uneventful and educational school year!”

September 5, 2012 Posted by | Charlie's allergies, Gage's allergies, LIVING | , , , , , , , , | Leave a comment

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