LIVING

With EoE, Allergies, Asthma and a G-Tube

March

It’s March already! How is that even possible? The days have been flying by. We don’t seem to make it through a week with out seeing a doctor of some sort.

charlie.jpgCharlie just finished up his last week of physical therapy for his shoulders. The physical therapist that examined him has connective tissue disorder. She knew exactly what I was talking about when I brought up Ehlors Danlos. She did some flexibility measures on him and said no doubt he has some form of it. The biggest red flag being his shoulders sliding out of place. So now we’re armed with home exercises to continue to strengthen his shoulders up. He’s heading into baseball season now and we hope they stay in place for the whole season. I imagine we’ll be back to the PT department in the future as his hips are just starting to slide out as well.

gage.jpgGage gave us a nice scare a few weeks ago. He came to me and told me his shoulder blade hurt. He was throwing a ball around and I told him I doubt it hurts very much. I felt and poked around a bit to see if there were any bruises. Then I felt a very hard, nonmoving, lump right on his shoulder blade. So off to the doctor we went the next day. The doctor told me there is a definite bump there but he wasn’t too concerned. He said it’s where the muscle and tendon attach to the bone. Because of his rate of growth the bone is over compensating and forming this lump. We are keeping an eye on it and checking it every couple of weeks to watch for growth. We’ll go back to the doctor if we see rapid growth or for a 6 month check up on it, which ever comes first. On a good note he’s gained the 6lbs back he lost! We were having some struggles with hooking up to his feeding tube, he only wanted to eat food. I think letting him see that he wasn’t getting the right nutrition and weight loss helped him to be able to understand just how important that feeding tube is. Also this month Gage’s archery team made it to state finals. Lucky me, I was nominated to be the parent who got to ride along on the 4 hour bus ride. Lucky Gage, he got to ride the bus with his friends and stay safe! Up next, baseball season.

tinleigh.jpgMiss Tinleigh is loving school more that a kid should. Which is a good thing. She’s definitely thriving there. We had her long vision therapy appointment for evaluation on how much and what they will do to help strengthen her eyes and keep them from turning outward. When I had her at her 6 yr old check up the nurse and I both noticed her good eye was turning out as well. She is officially diagnosed with intermittent exotropia and oculomotor dysfunction. Tinleigh is having a rough time with all the colds and viruses right now. I expected her to have a rough year with all the new germs since she’s never been around a lot of other people. She also seems to be having more and more incidents in the evening when we cook dinner. I’ve watched her react to beef, pork and chicken now. Cooked dairy is still very bad for her as well. She now tells us her throat is tight and she becomes more and more stuffy along with coughing and watery eyes. I had started her allergy meds and qvar inhaler a month ago in hopes of building up her system so we could try getting her into the school lunch room towards the end of the school year. That way she may not have to sit in the nurses office during lunch while she’s in the 1st grade. If dinner time at home is going badly I worry so will school lunch. Her ankles have started giving her troubles again just as softball season starts. Time to get back into some at home physical therapy!

layton.jpgLayton is 4! I hate how fast the time is flying by. We had her 6 month check up for her toe walking and orthodics. Though she is staying flat about 80% of the time when she’s barefoot, we now have to work on her ankels. They’re not as strong as they should be because the muscle that runs down the front of the lower leg isn’t strong because of the toe walking. So now her ankles turn inward. We’re awaiting orthodics to call for something new for her. Layton has also been telling me daily she feels like she’s going to puke or she feels like she has guacamole in her throat. This began back in November and is slowly been getting worse. She has eczema down her torso, around her elbows and upper thighs. She’s also been having some bowel issues. We’re trying to clear that out and hoping that’s the cause of nauseousness. Her little cousin Ellie with EoE also has these issues.

Just to touch on Nathan a bit, he’s been in the emergency room. The doctor has discovered he has diverticulitis with a possible addition of Crohn’s disease / IBS. As we learn more about that and how to adjust his already limited diet I fear he faces a feeding tube down the road as well. We pray for now though we can get things under control. He has had 2 bouts of diverticulitis in 1 month already so we need to get things figured out quickly.

On a good note we got the kids into Cincinnati Childrens eosinophilic esophagitis clinic in Ohio. We head there the end of April. The bad thing is they only take 2 new patients a week so that means two trips. After that they will see them all at once if needed. We’re very excited. It’s four days of appointments. First day is scope day. Second day is bone density scan, which they’ve never had, along with behavior medicine. Third day is a tour of their research lab and we meet with the allergist. I’m really hoping to get some better answers for Tinleigh from the allergist while were there. I’ve requested someone that specializes in mast cell and asked for a certain test to be ran on her. They will also be evaluated for connective tissue disorder. The last day we meet back with the GI doctor, find out the results of the scopes and get a game plan together. We may also meet with nutrition.  

Why are we going to Cincinnati? We live in between Denver and Cinci where the top researchers are located. Having family in Ohio that can help us out when we travel just made more sense. Cincinnati does have access to trial drugs which we may be interested in trying down the road. We also want to help with their research in what ever way we can to hurry up and cure all kids with eosinophilic diseases.

The most exciting part about us going to Cincinnati is the phone call I received from Wings of Hope telling me that they would help fly us to and from Ohio for our doctor appointments. Wings of Hope is an aviation nonprofit organization which helps communities worldwide become more self-sufficient through improved health, education, economic opportunity, and food security. It was founded in 1962 in St. Louis, Missouri, and currently conducts operations in 11 countries, including the United States. The organization was nominated for the Nobel Peace Prize in 2011 and 2012, holds a 4-Star rating on Charity Navigator and is a GuideStar Gold Participant. In 2015, 92.3% of the organization’s budget was spent on its program services. We are so beyond lucky that they can help us with our travels. If not then we’re looking at a 10 hour drive one way, plus stops.  Things are definitely falling into place as we make the change to new GI doctors. I am still sort of shocked that Wings of Hope will be able help us with our travels.

Advertisements

March 20, 2018 Posted by | Charlie's allergies, Gage's allergies, Layton's food exploration, LIVING, Tinleigh's allergies | , , , , , , , , , , , | Leave a comment

CURED 2017

A few short months ago Ellyn Kodroff, CEO of CURED, asked Nathan and I to speak at the upcoming conference in October. We had no plans to go, but something told me I was going to do this.

So Nathan and I went back and forth on making it happen. I had planned to take the kids to Ohio the weekend before to visit family then Nathan would join us in Cincinnati for the conference. Then everything got changed around and it ended up that I would be the only one going. Once I accepted this change, I happily embraced the fact I would have approximately 48 hours kid free.

I watched some of the previous speeches that parents had given at the conferences years before. Nothing was really coming to mind of how I wanted to present our story to a group of doctors, researchers, patients and parents. As the end of September quickly crept up I knew I needed to get busy, Ellyn wanted a copy of my speech as the October calendar rolled over. So one evening I sat down and just went to it. The speech just flowed out and by the time I was done I had 5 pages of what I wanted to share.

There was a problem though, I was only given a 15 minute time slot so I had to trim down this 25 minute long story. That part may have actually been harder than figuring out what to write. Then I had to add a slide show. Once I remembered how to use Power Point, the perfect pictures came to mind so plugging them in was no problem.

Writing the story ended up being no problem, practicing it deemed to be a problem. I could not make it through with out coming to tears. Okay, sobbing. I finally worked up the courage to read it to Nathan. We were both a mess. Day to day I’m really fine. I don’t really ever cry. Once I had our whole story laid out in front of me, all smooshed together in one bucket, it was very hard to face. I’m not sure if it’s the disease and everything the kids have faced. It could be all the crying I have suppressed over the years. I don’t know. Just a few days before the conference I decided to read it to the kids. What was I thinking?! I didn’t read it all because some of it would have been too much for them. What I did read though brought Charlie to tears. He asked me if that’s what it was really like going through all of it. So maybe it’s just that our story is sad.

So off I went to Ohio. I could write a whole blog post on my first time ever renting a car. I’ll save you the details and let you imagine how that went. 20171023_001320.jpg

I made it through Thursday listening to doctors presenting. I noticed that a few did seem a bit nervous. Why not? They’re human too. Though, it really didn’t help me relax any. Friday morning arrived. I was up at 5:30, 4 hours and 15 minutes until I had to speak. I arrived at the conference and found a seat, then a muffin and coffee. I ate a few bites noticing my mouth was already dry as the desert. I decided to get up and head out to meet some people. Maybe that would loosen me up a bit and make me forget about having to present. I met a few moms that I knew only through facebook. It was so exciting. It’s sort of like meeting a celebrity.

I made my way back in to sit down to try and force my breakfast down. As more people came in someone placed their belongings in the seat in front of me. That someone was The Dr Marc Rothenberg, one of the world’s foremost authorities on eosinophilic disorders. Yep, breakfast was over.

As the morning started and the first speaker was announced I was focusing on my breathing. I kept trying to relax. I kept reminding myself how important it was for me to share our story with a sold out room filled with doctors, researchers, pharma, patients and parents. I believe there were 200 people there. 20171022_233920.jpgI recently came across this scripture, it came at just the right time. I saved it as the screen saver on my phone. I think I read it a thousand times that morning before my speech. Maybe this scripture is meant for something much larger, but it definitely helped me that day.

As each speech ended and the time grew closer I really thought my heart was going to jump right out of my chest. I’m pretty certain the guy sitting beside me must have thought I was crazy as I kept taking huge deep breaths trying to calm down. Before I knew it, it was my time to shine. I already had tears in my eyes, my emotions were so high.

I made my way up on the stage, asked the lady who introduced me how to work the clicker for my power point, she showed me then left me to present.

As I opened my mouth the tears started coming. I took another deep breath, and said “Phew! Let’s switch gears for a moment as I share a patients side of things.” Then I went right into it. After thanking all the doctors for coming to share and wanting to learn I thought I was going down. I don’t know how I pulled it together, but I did. I could hear myself talking, I wasn’t rushing and I had magically memorized my speech. I was able to look at the crowd that I had feared and shared my family’s journey with every ounce of my heart. As I clicked through the power point I would glimpse at the pictures on the small screen in front of me and every one reminded me why I was doing this.

When I finally made it to the end I was crying. Getting those last few sentences out was the toughest. But, I did it. All I can remember is that I said thank you. Picking my papers up off the podium is a picture that is burned in my head. I didn’t wait for questions from the audience. I walked off the stage and gave Ellyn the biggest hug. I felt SO good knowing I did it. What I didn’t notice though was that everyone in that room was giving me a standing ovation. WOW! How did I do that with our story? I’ve also been told there wasn’t a dry eye in the room. 20171023_001346.png

So many people approached me and thanked me for sharing afterwards. A few speakers that followed even mentioned me. It was amazing. I have never felt so accomplished. I know I did the right thing by accepting Ellyn’s invitation. I had opened the eyes of the medical professionals. I let them see just a glimpse of life in a family with EoE. I hope I lit a little fire under them.

There was one gentleman, who I didn’t get his name. He approached me and thanked me for sharing. He then told me I am an amazing woman. To handle what my family has gone through and is going through I must be able to handle anything. He told me I am very strong and that I am a super mom.  It was like what all of you, my cheering section, has always told me. You know what? It felt good to hear it again after giving that emotional speech. Like maybe now I accept that title.

Thank you to all of my supporters who cheered me on! This was definitely an experience that isn’t over. I feel it maybe the start of something new.

Stay tuned. I am going to share more on the conference!

FB_IMG_1508192707451.jpg

October 23, 2017 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Nathan's allergies, Tinleigh's allergies | , , , , , , , , , | 4 Comments

Making Friends, Accepting Differences

Being different is something I’ve always explained to my kids. Even before we were different. I’ve not only spoke to them about being different, but also about accepting differences.

In fact, when I spoke to Tinleigh’s kindergarten class about her allergies and feeding tube I used the words “being different, and it’s okay” as the main point.

So when I was told a story about Tinleigh asking the school nurse “What’s wrong with her?” I about fell over.

As you read in my last post, Tinleigh spends a lot of time in the nurses office. She gets to meet a lot of the kids at school. One day a little girl in a motorized wheel chair came in. Right in front of her Tinleigh says “What’s wrong with her?”. The nurse quickly shushed Tinleigh and said “Tinleigh, how would you feel if someone came in and asked me what was wrong with you?”. Tinleigh cupped her hands over her mouth and had an “oh my gosh what did I just say moment”. The nurse then introduced the other little girl to Tinleigh and asked the other little girl if she could explain to Tinleigh why she was in a wheel chair. Being non-verbal the other little girl shook her heard yes and smiled intently. The nurse explained to Tinleigh this special little girl isn’t able to walk or talk, but she understands everything people are saying around her. Her motorized chair helps her get around and she has a computer on her chair that helps her communicate. Once the nurse was done explaining to Tinleigh about the little girl Tinleigh stepped up to her, lifted her own shirt showing her, her feeing tube and said “This is what makes me special.”. The little girl held her hand out, Tinleigh placed her hand in hers and the two girls just smiled at each other. Instant friendship.

OH MY HEART!

I wish I would have been there to witness this moment. I was concerned at the start of this story that Tinleigh had forgotten she’s a little different as well. I don’t think Tinleigh intended to sound so rude, I think she was just more curious and didn’t know the correct way to ask. I am glad Tinleigh shared her something special.

I am so sorry to this little girl and her parents that Tinleigh was rude.

I am forever thankful for the nurse correcting Tinleigh and allowing those two little girls to have a moment.

The girls will continue to bump into each other in the nurses office throughout the year. I hope their bond grows stronger.10418453_10206402281322733_6302818484168056288_n

September 24, 2017 Posted by | daily life, LIVING, Tinleigh's allergies | , , , | Leave a 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

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

Our EoE video

I’ve been wanting to do a video for a few years now and have never found the time to do it. Even now I’m typing one handed and feeding Layton. I stayed up until 2am last night after the kids went to bed and got a video made!! Then of course I had issues converting it and uploading it.

Here it is! It shares a quick glimpse of our journey with EoE from January 2010 until today.

EOE

May 23, 2014 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

Please help us find a cure

You are just a few clicks away from helping my kids one day be able to go to birthdays and eat what the other kids are eating.

One click away from my kids going out for breakfast on their birthday.

One click away from going to the movies and buying a treat.

One click away from a family vacation, which is virtually impossible unless i pack an entire trailer of food.

One click away from my kids going to the dairy bar or getting a treat from the ice cream truck.

One click away from me not having to pack a duffel bag of food every time we leave the house for more than a few hours.

I think most importantly, one click away from me cooking one dinner for my family that we can all sit down and enjoy together.

You’re also one click away from helping many families put an end to the staggering grocery bills.

One click away from helping end the outrageous hospital bills that are never ending because of the maintenance of this disease.

Please help us find a cure.

Forgo you’re expensive coffee tomorrow and donate that money to CURED.

Donate what your family would spend when you go out to dinner.

Donate the cost of the candy your child picks out in the grocery line that mine can’t eat.

Donate $1.

Every little amount helps my kids come closer to one day being able to eat a normal healthy diet.

DSCN3964

May 19, 2014 Posted by | LIVING | , , , , , , | 2 Comments

Day two at the hospital

Tinleigh and I slept in until after 9 on Wednesday. Starting around 6am though I had to keep shoeing doctors and attendees out of the room because I knew she needed her sleep. Finally when I did allow a group in I shook the lead doctors hand and Tinleigh shook everyone’s hand as well. I knew we were going to have a good day. She was being friendly. She even let me get a picture of her belly. DSCN3970I said say cheese! She said no.

Mom arrived a short time later. I was able to change my clothes and brush my teeth. I touched up my make-up. Tinleigh put some on as well. DSCN3971A girls gotta look her best. DSCN3972The little guy next to us had gone to the playroom and was gone all morning. I sort of felt relieved I didn’t have to worry about how loud we were being after our late night. I did apologize. The mom was so understanding and told me had we been there the night before we would have heard him yelling the same way she had been.

Finally our GI doctor came in. She informed me that as long as Tinleigh wasn’t in a great amount of pain we could go home today. She just had to be able to tolerate two feeds of formula through her tube. I took the deal! So our plan was to hook her up now, then again around one. We also had to discuss our plan of action for the next few months. Funny thing is a few short weeks after I found out about our little #4 surprise our GI found out the same thing. So we’re due with in weeks of each other. That puts us close to what would be Tinleigh’s first three month scope on elemental only. We worked things out and have a plan, my mind is at ease.  We will scope Tinleigh in three months time only if she’s begging for food. If she’s content how she is then we’ll push it off for 6 months. That is around the time we will be scoping Gage for his new food trials.

Tinleigh did awesome with the first feed. She was a little groggy. When she had woke up she was complaining her belly hurt so we did one more dose of morphine. She just wanted grandma to hold her. I ended up running down to grab us some lunch while she was happy in grandma’s lap. When I got back Tinleigh was asleep in her bed. Mom said she wanted to get back in her bed. So she laid her down and she fell right to sleep. She was still sound asleep when it was time to hook her up again. We decided it was best for her to rest rather than to worry about getting out of there asap. Tinleigh slept and slept. To the point where it was getting to cut off time of mom having to leave to go get the boys from school. So I made a few quick phone calls and was able to have a friend get the boys so mom could stay with us and we could leave when Tinleigh was ready.

She finally woke up and we got her going. She was very leery of us touching her button. I’m sure it was very tender. We assured her though it was ok and I was ever so careful. Luckily I didn’t have the shakes like I did when Gage got his button.

The number one thing I had already started getting lined up was her home care delivery. Gage gets a shipment of supplies monthly. This would include his formula, formula bags and extensions. Before we even had surgery I had already spoke with someone in our GI office about the supplies I wanted for Tinleigh. I told them the size bags, brand of pump and the special little book bag I wanted for her. So when we got to our room the day before I immediately began finding out where they were with her delivery and if things were in place. They had the call into our home health delivery company but things weren’t 100% lined up yet. So even though Tinleigh had finished her second feeding we weren’t cleared to leave. I assured them I had supplies at home and she could share Gage’s pump. They were fine with that. They wanted to make sure though she would get her delivery the next day. So it took about another hour before we got the final ok to go home.

In the car I quickly realized Tinleigh’s seat buckle hit exactly where her button was. So I had to recline her seat a few notches so that she wouldn’t be sitting straight up and risk pushing on the button. I was so certain I would hit a bump and she would be screaming in pain. Luckily we made it home safe and sound.

I would say our biggest issue was keeping Tinleigh occupied. Some of the things I took with us included a paper doll book with stickers to dress the dolls in. Sheets of stickers I purchased at the dollar store. My tablet. My phone. She has a Dora hard plastic backpack that we packed with all her little animals she plays with. I even took some plain paper and construction paper with crayons. Luckily the tv system they had there allowed us to also rent movies. That helped tons!

Then we were home…to be continued.

January 20, 2014 Posted by | LIVING, Tinleigh's allergies | , , , , , | 2 Comments

Round two

Back we went to the hospital the next Tuesday morning. Nathan had an important meeting at work he could not miss so mom went with me this time.

We pulled into the parking garage and Tinleigh said “No”. She knew what was going on. We got her up to peds surgery and tried to get her to play. She was so hungry and thirsty this morning. She was not a happy camper. Luckily it wasn’t long before the nurse called us back. Tinleigh was hesitant to go back this morning. We finally got her to willingly walk back. She did however refuse to put on the hospital jammies. DSCN3960She made her mask just like she does every time. Then we tried to keep her occupied playing with cars and a little train set. She was begging for something to eat and drink. We tried our best to keep her mind off of food and drink and tryed to get her to focus on other things. Finally I told her the doctor would bring her a drink, oral versed. From that point on every time a nurse would walk by she would yell “Doctor drink! Doctor drink!”

Finally she got her oral versed, I signed consent forms and spoke with the doctors that would be in her operating room. DSCN3961She was relaxed and ready to go. I had slipped on her jammies with out her even really noticing what I was doing. She had her tubie buddy with her that she had received the week before. The attending anesthesiologist came and got her and off they went. Huge deep breath. Here we go again.

Mom and I made our way to the waiting room and settled in. I then decided we better eat because it was going to be a long afternoon. Once again I sulked down to the cafeteria wondering if they would be able to proceed with the operation this time.

I made it back to the waiting room with our food and there was no sign of the doctors so I assumed things were going as planned. A few minutes later Nathan arrived. I’m not quite sure what time it was but I got a call from anesthesia that they were done and reversing her meds to wake her back up. Five minutes after that our GI and surgeon met us in the consultation room. The surgeon explained everything went great. He didn’t need to make the extra incision he thought he was going to have to make. He was able to do everything through her belly button. We discussed her pain levels and the plan for feeding her while we were in the hospital.

It was over. Now we just needed to get to go see her. Because it takes a little more to knock her out, it takes her a little longer to wake her up. Mom had to leave to be able to be back in town to get the boys from school so she left before we got to go see Tinleigh. It took Tinleigh quite a while to wake up but we didn’t mind. We knew there was a great chance she wasn’t going to be a happy camper.

We finally got her to come around. She woke up calm. We were shocked. She looked at the splint with the IV on her hand and didn’t even make a fuss over it. She did sort of grab at her belly a few times but because it hurt. She didn’t realize there was anything in there. I think we got up to her room around 3 and our plan was to hook her up for the first time around 6. It wasn’t long before she was sitting up and eating ice. Still quite groggy from the morphine but she wasn’t about to let that stuff make her sleepy! DSCN3963So she ate ice and played on my tablet for a while and was content.DSCN3962I was just waiting for this explosion of the little Tinleigh I knew.

Around 6 we showed her, her button and explained we were going to hook her up. Just like Gage. She repeated things back to us and understood she had a button like Gage. The first time we hooked her up it was with pedialyte. It was only a few ml’s into it and she said puke puke. The problem was she had been drinking so much pop and eating so much ice her little tummy was already full. So I just stopped the machine and unhooked her. I wasn’t going to stuff her and make her puke. So I informed the nurse of what I had done and sort of told her how it was going to go. DSCN3964We waited a few hours then we hooked her up again. This time at a very slow rate and we kept her on it over night. When I say slow I mean like she was getting one ounce an hour.

It was getting late and she was hurting again so we gave her some morphine in hopes it would also knock her out.DSCN3965

Big negative. Not our little fighter. In this picture she appears to be praying. Instead she actually has both thumbs in her mouth and is dozing off. Refuses to lay back and go to sleep. It was 10pm at this point. She was no about to give in. Before this picture happened she did fall asleep sitting up with her index finger half way up her nose. We finally laid her back and she slept.  Then an hour later she woke up! Ready to go again. DSCN3967She was quite cranky and loud. A nurse brought in a doctors play bag full of things. That occupied her for quite a while. DSCN3968Then her and Nathan had a fun time banging on the plastic roof on her crib.

Nathan finally had to leave so he could get up for work the next day. Once he left she wanted me to hold her. I turned the tv off along with the lights and I held her in the chair, barely. Because of my stomach she kept sliding off. By 1am she was asleep. For the next two hours I tried twice to lay her in her own bed. She would wake up and yell. So I knew that wasn’t going to happen. Problem was I couldn’t fall asleep holding her because I wasn’t sure she would stay on my lap. Plus we had IV cords and her belly was hooked up. I didn’t want to risk something coming out. Finally around 3am a nurse came in to check on us and I asked him to help me get her into her bed. With success we laid her down and she stayed asleep. I tip-toed down the hall and used the restroom while he pulled my chair bed out and made it up for me.

The worst part of all of this is that we had a shared room. We had the bed closest to the door and I wasn’t allowed to use the bathroom in the room because it was for the other half. So every time I had to pee I had to make sure someone was in the room with Tinleigh or make sure she was asleep. The other bad part was that we were the bad neighbor. I didn’t hear one peep out of the little guy next to us the entire time we were there. I literally heard him call out to his mommy once in the middle of the night. Tinleigh was the loud screaming bad roommate. Lastly, once we were in the room I started chugging water because I hadn’t drank much all day and my ankles were swelling. So during the night I was using the restroom constantly. Those nurses probably had a bet going on how many times I would go. DSCN3974Once Tinleigh was in her bed she pretty much didn’t move the rest of the night. Even during her status checks she didn’t wake up. I slept some. I kept waking to check and make sure she hadn’t moved because I didn’t want that cord in her belly pulling out. Plus every one knows how hard a hospital guest bed is.

Overall the day went better than I expected. She was mellow until she started fighting sleep. I believe that because Gage has a button her getting one was just normal to her.

She accepted it.

To be continued…

January 19, 2014 Posted by | LIVING, Tinleigh's allergies | , , , , , , | Leave a comment

5%

As promised I will begin to walk you through having a feeding tube placed in your toddler.

Let me start with this past Sunday. We let Tinleigh have a cheat week. Foods we knew she wouldn’t have an anaphylactic reaction to. Sunday evening Tinleigh had some lucky charms. Around midnight she woke up, something she never does. We finally got her back into bed and back to sleep with in the hour. Around 5am she woke up and had puked the lucky charms up. Nothing else, just lucky charms. This was a delayed trigger food reaction. She went back to bed about an hour later and was fine the rest of the day. Fast forward to Wednesday evening when she had a banana. Boy did she love that banana. She hasn’t had one in months. The same thing happened that night. She was up around midnight and back in bed with in the hour. Then at 5:30am she puked up banana. This was 12 hours after she ate the banana and had a formula bottle before bed. The only thing that came up was mushy banana. So I changed her bedding and her clothes and we went downstairs to watch Diego. This time was a little different though. She continued to dry heave up her saliva. After about the third time of doing this I was getting nervous she had the flu. She didn’t have a fever though. She was also acting like her little perky self. She never went back to bed, neither did I. Soon it was time to get the boys around for school. Since she wasn’t truly puking but just heaving up her spit I asked Charlie to keep an eye on her while I quick jumped in the shower. Nathan had already left for work. By this point she was doing it about once every half hour. So right after she did it I ran to the shower. As I stepped out of the shower Gage was waking up. He was sopping wet. When I hooked him up at 7am in bed his tube popped open and continued running all over his bed instead of into his belly. Wonderful, more laundry to add to the puke towels. When I came back down from the shower Charlie had Tinleigh on the floor sitting on a blanket, puke protection, with a tray and her foam stickers and paper. Oh he’s just the best!

At 9 I got everyone into the car to go to school. Just as I buckled Tinleigh and placed a towel on her lap she puked. Once again Charlie to the rescue, he ran in and got me another towel for her.  Off we went to school. I figured I had 30 minutes we could make it back before she puked again. I took a towel in with me when we dropped them off just in case. Once we were home she wanted pop. Luckily I had some sierra mist. So I gave her 1 tbsp and we went straight to the bath tub. After about 20 minutes she asked for more and hadn’t puked any up so I gave her another tablespoon. We were cutting it close to her cut off time of clear liquids before the procedure. I continued to let her play in the tub for an hour. She sipped on the bath water and had a few more tablespoons of pop. That was the end of the puking. Still no fever. I called the nurse and she said as long as there was no fever we were good to go. Nathan arrived home shortly before lunch and we left for the hospital.

Arrived at the hospital and I was so tired from the morning. Being in my last 10 weeks of pregnancy getting up at 5am isn’t something I can do easily. Tinleigh played in the waiting room and was just fine. You would have never guessed the morning we had. They called her name and she ran right back and jumped on the scales. She knows the drill. DSCN3949We waited and answered questions. They were super busy today. We spoke to the GI doctor who once again explained what was going to happen. She would scope down Tinleigh’s esophagus with a light and camera. Once in her tummy she would shine her light out so the surgeon could see where to make his incision. They were also checking to make sure there were no other organs in between the tummy and wall of the gut. Then we spoke to the surgeon who explained how he would secure the mic-key button. Last was the anesthesiologist who remembered us by name. We should have frequent customer points.

We got Tinleigh in her gown. She made her gas mask. DSCN3951

The nurse let her pick out some toys. Of course she picked out the cars. She must have been missing the boys. DSCN3950Then it was time. Nathan went back with her because the anesthesiologist said it’s not safe for me at this point in my pregnancy. So I sat and cried for a while and waited for Nathan to come back out. It took longer than usual but he finally came back out. They couldn’t get the laughing gas to work.

We made our way to the waiting room. I then had to go get something to eat and drink for the baby. I sulked down to the cafeteria where nothing appealed to me. Got us both something to drink then grabbed a bagel and peanut butter. I was about 20 steps from entering back into the waiting room and Nathan called me. He started right in about the doctor and Tinleigh. I was confused and told him I would be right in. As I walked in there he was in the consult room with the GI doctor and surgeon. I was so confused. As the door closed the doctor said Tinleigh is fine. However, we cannot do the procedure today. Tinleigh falls into a small 5% of kids where their tummy sits too high under their ribs. If they would have proceeded to try to put the tube in they ran the risk of nicking her lung and or having the tube rub against her ribs once it was in. They knew to stop, thank goodness. I asked then why did the x-ray show that everything looked fine to proceed. The surgeon explained that the x-ray isn’t always 100%, like in this case. I asked him three times because I was so frustrated we had even done that and it was a useless appointment, just something else Tinleigh had to go through.

So they scheduled her right then for Tuesday of this week in the OR. The surgeon will make in incision low on her abdomen, pull her stomach down to where they need it to be then, put a few stitches in the stomach and the wall to keep it in place. Once that is secured they will put the tube in. All during the same surgery. She will have an extra incision and a bit more pain because of this. I dread it for her.

After we were done talking I quickly inhaled my bagel, can’t forget to feed the baby! As I took my last bite the nurse called us back to be with her.DSCN3952

Tinleigh slept for quite a while this time. She didn’t wake right up as usual. We think she was just catching up on sleep since being up since 5am. If you notice there’s a Popsicle in the wrapper laying above her head. The nurses know to have one ready for her upon waking. They’re an awesome crew. Tinleigh actually woke up very pleasant this time. She saw her IV and didn’t even seem to mind. Enough time had passed that the nurse could take it right out. She ate two popsicles then put on a little fake cry show for us. After that we got her dress and headed home.

We were all exhausted, emotionally and physically. Such a roller coaster of a day.

The day after her procedure I woke Tinleigh up at 9am as usual to take the boys to school. She was acting so tired. I changed her diaper and stood her up to put her coat on. She just laid back down on the floor. I put her boots on her and once again stood her up. Just as I was getting her coat on her she puked. I immediately felt her cheeks to see if she was warm. She wasn’t. But what was running through my head was she was having a reaction to the anesthesia. We have a family history of malignant hypothermia and we have to be very careful. We had only fed her safe foods the evening before so I knew it wasn’t food related.  I took the boys to school and called the nurse in the procedure room immediately after dropping them off. Our anesthesiologist happened to be standing right there so she put him on the phone. He explained the anesthesia should be out of her system 4-6 hours after and that he didn’t think it was related. She continued to puke up her saliva for the next few hours as we laid on the couch together. Then all the sudden she jumped up and wanted to play. We slowly introduced liquids and then she wanted food. Still no fever. It was strange. She hasn’t puked since. We’re also not feeding her anymore cheat foods.

So Tinleigh is a rare bird. She’s in a 5% category with her tummy and tube placement. She’s in a small percentage of kids like Gage and their cousin that need tubes. She’s also in another small percentage of kids, like her cousin, that don’t test positive to foods, which makes figuring out her triggers for this disease hard.

So I will continue on with our tube story Tuesday.Tinleigh-5286

January 12, 2014 Posted by | LIVING, Tinleigh's allergies | , , , , | 2 Comments

%d bloggers like this: