Update... Been a couple hard weeks.

Well in my last post I stated that we were struggling with Jaxen's Diet. It had been bad, Jaxens Anxiety and caloric intake were both in bad places. This summer it has been getting progressively worse but I kept holding to the fact that he was starting feeding therapy soon and they would help us. Well our super awesome insurance company denied Jaxens feeding therapy??? SERIOUSLY... I had a major freak out. Like the uncontrollable sobbing all day kinda freak out. I had calls to make but couldnt even keep it together to speak. What ticked me off the most was that they gave us the therapy last year in November, when we could not pay the massive deductible and co payments. So now that we have been maxed out on our out of pocket for months; I had scheduled his appointments and everything and found out the day before the first appointment. I was so devastated, pissed off, and completely broken at the thought that they were not going to help him and help me... I don't get how we got approved last year before all his diagnoses...? Makes no sense! And now he has these diagnoses and the deny? UGH- I am so fearful for him. He was diagnosed with PTSD and anxiety. The PTSD comes from being sick for a long period of time, Food make him vomit so much that now he feels as all foods will make him vomit. He has been down to only one food for the last 5-6 weeks. We have tried everything. The anxiety has also spread to other places and has caused some OCD. He is Six years old! It breaks our hearts to not be able to take away his fear. So the next day... when I could speak a little better without breaking down completely I made calls. I set up an appointment with the Gastr. Dr. Harnsberger and Jaxens Pediatrician Dr. Duffy To help us in one way or another. If we were not doing therapy something needed to be done, He is basically starving himself. After both appointments they decided to put Jaxen on an anxiety medicine to see if it help at all after ten days if he isn't eating a ton, and I mean a drastic difference in calories- he will be getting a gastric feeding tube (G-tube). I have days were I am so upset by this and days were it almost relieves the anxiety over what he is eating.. he has fallen off the growth chart weighing in almost 3 pounds less than he did 2 years ago at age 4. He is currently in the 8th percentile for his weight from the 47th. We have to do something but the idea of the tube is so upsetting I just want him to be a happy, healthy little six year old boy. He is struggling. I am struggling. We are all struggling. I am desperate for a solution to all these issues. It really is sad that the financial burden hanging over our heads keeps us from being able to do the things they need the most. That's what is so heart wrenching. It hurts me more than anything to think that if we had the money their care and health situations would be completely different. We wouldn't be going through this right now. They would be doing so well. Makes me feel like it is my fault they are struggling. They are my responsibility right? Everyone is great at telling us what they need and when but no one can tell us how to cover the kids medical expenses. I wouldn't wish this pain in my heart on my worst enemy. So we will be setting up at time for Jaxen to get his tube next week. Monday or Tuesday. Ill update again soon.

Update slash vent post..... It has been too long.

I have not blogged in forever. Too much has been going on. I have so much to say so beware... This post is gonna be a DOOZY. I guess I have to start from June... June has SUCKED, I had been having a bunch of random health issues myself that have caused me to be pretty sick so sitting at the computer blogging, or getting out of bed, eating, basic functioning... has been impossible. But so much has been happening that I need to post! Good ole June....Tieler had a well child check up on the 8th. She dropped from the sixteenth percentile back down to the 11th, which I think is normal for were we are at considering the situation. Ok going off on a tangent here..... I absolutely LOVE My pediatrician. He in phenomenal. His name is Dr. Duffy he is at Riverton hospital. He totally puts up with me, and does such a wonderful job for all three of my kids, I can't say enough. BUT his nurses... (Which by the way I think is so so so huge) Are just as fabulous. I love them. I just had to say how great they are. I trust them so much to always lead me in the right direction... RETURN to Tielers well child check up... We also discussed were she was at were I wanted her to be, Tubes- when and why,and mostly about the appointment with the geneticist Dr. Longo, Who Dr. Duffy and Dr. Sukonju (Tielers Nuero) said was wonderful- We were being sent there because Tielers Carnitine was still deficient, and had slightly lowered. We are so confused by this and I was really hoping that this upcoming appointment with Dr. Longo on June 11th would really help to clarify what is going on with her and why it is low. NOW every single Doctor and specialist we see (A LOT) has told me that the body should be replenishing itself and was not associated with her diet since its not existent... Hence- getting sent to see a metabolosist in the first place. So I made Gary leave work and come to the appointment. It went terribly. First we saw this stupid Dr. Warnock..... UGH She sucks... worst doctor I have taken my kids too. She didn't answer my questions and basically told us it was her diet and that they would run a few tests but Tieler didn't seem sick enough to have some of the diseases associated with this condition... Pissed off is an understatement. I told her how all of my other doctors has said differently her answer to me was well I think they are wrong cause she seems ok? After talking to us for 5 whole minutes. I was more angry than anything that she wasn't answering my questions at all then she would say any more questions?? I wanted to say yea please answer all the questions I just asked.... GRRR She told me they were going to to a organic acid urine test and re test her canritine to see were it was at. and we left- whats most irritating- having such high expectations to get answers. I know quite a few children on strictly formula diets and few safe foods like Tie and the do not have a carnitine def. I don't do the band aid effect. I want to know why things happen and not just treat them. So we left within the next few days we went and dropped off the urine sample at the lab the tech said 7-10 days for results.... No call.....two weeks.... No Call..... three weeks..... no call so after 4 weeks I called and left a message.... no return 4 days more, no return... finally got a person on the phone and begged for them to have some one call with the results...2 more days later Stupid Dr. Warnock called and in her stupid voice says the Tieler had a high glycine level in her orgainc urine test... I said what is glycine? she said its an amino acid and sat there silently. I said soooo why do you thinks it is high what does that mean? She said well kids that have this problem are generally much sicker so I think she must of ate a bunch of something that caused it to be that elevated. I said well what causes it cause she only eats five foods? She said she wasn't sure but was going to wait six months and redo it. WHAT?????????? Why are we testing for things if were not going to learn from the results??? and I looked up foods that cause an elevated Glycine and it said cranberries, grapes, and parabens.... Overall I guess I am just frustrated that she is still sick, treatments aren't working that GREAT and now were on the verge of scoping again... Third times a charm right? We have been talking about sending her file out of state to the specialists at CHOP in Pennsylvania. Maybe seeing a dietician would help? I haven't met anyone who is going through the same stuff with this disease? Someone anywhere in the world has to be like her.... I need major answers and no one seems to know how or whats happening in her little body...

As for Jaxen Just after my last post Jaxen spent a few days in the Hospital at Primary Childrens. It was a scary few days of trying to figure out what was happening. He was complaining about severe knee pain for days that came in waves. he had had a mild bug before it started, like fevers and feeling unwell. We could not tell if it was growing pains or he had pulled something? The pain got worse and worse to the point were he was screaming his guts out in pain. after two days we decided it was too intolerable to watch we took Jaxen to the ER and he was immediately admitted into the hospital. They said Jaxen had elevated white blood cell count and a CRP of 8.1 ( very high) CRP is the level of inflammation detected in the blood they told us 2 was very high so 8.1 got him a room...They administered loads of pain medication to were he was comfortable and they could attempt to find the cause of the pain and inflamation. We were told that they had thought it was possibly cancer at one point which was the scariest thing EVER!!!!!! after three days of testing, Bone taps, MRI's Jaxens CRP began to lower slowly. at some many points did we think we were about to go into surgery, but we also luckily avoided that too. They dont know what it was but possibly Juvenile Idiopathic Arthritis? We wont know till over time. He has had a couple flares since then but nothing some Ib Profin didn't fix. The MRI showed fluid in both knees even the one not hurting... Weird they also said they thought it was this referred pain thing from an infected joint... We ended up getting to go home and Jaxens been doing much better. He is getting so excited for kindergarten, a year late lol. I feel like he is ready this time and his health care is in check more than it was last year. He was just too sick to start school. Were debating about whether he will need one of the "504" plans... He misses school regularly because of his condition. I refuse to get a note each time.. Silly... So most likely I guess. He starts feeding therapy next week which Gary and I can't wait for. Jaxen is eating ONLY pbh sandwiches and really nothing else. His case is sever... we are loosing our minds dealing with this I am hopeful they will teach us all!!

Bostons doing well, Diagnosed with Asthma, which we knew. An Egg allergy and of course DOG...they said Cat will pop positive in the future too. No big surprises. he will be getting his adnoids out in November..... and that's about it... Sorry these end up being so long... its like a fricken book....

FINALLY!!! some good news!

OKAY.... So it has seriously been forever since I made any updates... I guess that until Tieler had her scope I didn't feel like getting on. It also took way longer because they had to move it back 4 more weeks cause she had a bad case of bronchitis and the Anesthesiologist refused to put her under. So things have been different. I was super paranoid that Tielers formula was making her sicker and that we would have to switch to a new formula, (Elecare or Neocate) which would have cost us an additional 500-800$ a month (as if 1000.00 a mo. isn't high enough!!). At first her symptoms got better so fast she was sleeping through the night for the first time in her life and her skin started to heal finally and then it started to come back at week ten her waking up and complaints of throat pain. I was so worried and so upset after the scope because her esophagus from the pictures did not look good it had large white chunks (TMI sorry!) all over along with esophagitis. Dr harnsberger told me there was a small chance it was yeast but most likely it was micro-abscesses of eosinophils, and that if that was what it was then she was NOT responding to treatment. I was a mess, a bigger mess than I have been since we got the original diagnoses... :) I was so worried and every thought of hopelessness drifted through my mind.
The what ifs...
1. How willl we pay for the new formula?
2. How do I keep her off a feeding tube? ( we tried the neocate splash... BAD)
3. Will my marriage survive this?
4. Will we have to move again? possibly into the ghetto?(lol I am serious!!)
5. How will we keep her Healthy?
6. What will our life be like?
ETC. and more...
I guess the feeling that for me and Gary both is that no matter how hard we work, no matter what we do we will never be able to relax a little, enjoy family vacations, not stress about money, Move back into a house, feel some sense of security? and not worry about how we will pay this medical bill and for the next 6 days (yes I said DAYS) worth of formula, this is LIFE LONG it will never go away. I feel so inadequate as a mother, Why did God think I was actually capable of such a big Gift and responsibility as he gave me these three beautiful babies? ME? Really? I cannot say I wouldn't change a thing about them cause I would! I would take away this terrible disease and all their pain and discomfort, and restrictions on their life. But for now we are going day by day, and sometimes its good and sometimes its bad, I will take every triumph for what is is big or small and I HOPE each one Gives me more HOPE to keep going on and providing a happy life for my kids!
SOOOOOO the GOOD news? Tie had ZERO EOS!!!!!!!!!!!!!!!!!!!! Yep that means that the TINY amount of food she is eating is safe! Her body is not fighting the potatoes, cocoa puffs and Trix, her formula, and her sour dough jelly sandwiches.... It was a Horrible yeast infection which we are working on clearing out now. and letting her esophagus completely heal. We talked for a moment about food trials but were going to wait for quite a while. I want her to be pain free for once! And most every thing we will be trying is stuff she is still very allergic to according to scratch testing and the RAST. So For now we wait and we will HEAL!
Thats not all my news... as far as JAX he is doing GREAT! he has not gained weight, but he has not vomited in weeks which is freaking awesome for a kid that was barfing daily! I WISH so badly we could afford feeding therapy, cause the kids need it so so bad but its one of those things like fifty others that doctors tell you they need asap. But there's no way to pay for along with everything else that this disease causes. Makes me IRATE! I hate insurance companies they make a ton of money off me a fight me to pay for every stupid thing!
And Last but not at all LEAST.... Boston. So Boston started to freak us out just a little cause he chokes on everything, littlest flake of bread, and his reflux has always been way worse with milk and soy than the nutramigen so Dr. Harnsberger decided that we check Boston at the same time as Tielers last scope! And amazingly... I have one Child that does not have ANY Eosinphils... ANYWHERE! yay! He does have bad reflux but its just normal ole reflux! woohoo! He can start eating everything. It feels so weird pouring milk into his formula bottles, lol I feel like I am putting some poison in them because that's what milk has been at our house! So thats were we are at! I left out a lot of in between stuff but I have too much to do and this post is getting really really long! Peace out>

a Super CRAZY few weeks...

So I haven't been keeping up on the blog the past few weeks we have been really busy with moving. We are officially moved in there is still a good ten boxes to go through but were slowly getting there! We have had some new developments with our EOE. Tieler saw Dr. Gliech The supposed GOD of EOE. He was a nice little old man. Tieler loved his Donald Duck voice. I felt like he had a lot of information. It was kind of nice to hear the words " There is so much we dont know about EOE" Only once the entire visit its so frustrating to have every doctor tell you multiple times a visit they have no idea why this or that is happening. So I guess that was a bonus. They want Tieler to participate in the Research study they are currently in at the U. I don't know how I feel about it because the dosages of medication are CRAZY high. 880 MCG of Flovent a puff (2-3 a day). Right now Tie is on 220MCG per puff and that is high to me. I don't know enough about the program to decide yet his coordinator is suppose to be calling me to discuss the study in more detail. We would like to see what her next biopsy says before we make a desicion too. Tie is still very syptomatic. They decided to give her a round of steroids to wipe the esoniphils out since she has been not feeling well. I keep expecting her to feel great, and gain weight, at least the last pound she has lost since her diagnoses, but she still hasn't gained it back. Dr. Gleich wanted Tie to be on the Elecare instead of the Vital Jr. I had an apt. with Dr. Harnsberger the next day and told her that I was upset about that because I didn't know how we would pay for it and what she thought, Not that we wouldn't find a way. It just broke me to think I had to try to turn our world even more upside down that it currently is to make it happen. She disagreed. She said Tieler needed more formula so we could at least get the pound back she lost, so she is drinking Three a day now. She told me that she was a formula expert and felt like the only difference from the Elecare and the vital jr were that elecare tasted horrible and costed ten times as much. Right now we spend 160.00 every week for just Tielers formula. And about 70.00 a month for Jaxens. I know that will go up but I have heard nightmare stories about the elecare and neocate.
As far as Jaxen. He is doing a tad better. Since we removed milk there has been less vomiting. You would think it would stop all together but they are hoping after the steroids that he will be doing better Jaxens eosinophils are very different than Tielers. He has 55 in his stomach I guess 40 is normal. And he had 28 in his esophagus, none is normal and 40 in his small intestine which 35 is normal... Weird, he has more than normal in each area, but barely. He has mild damage in each area. His lactase deficiency is 1.9 which is terrible. They think that most of the vomiting comes from that but Because Jaxen's diet is so broken taking Jaxen off all the foods he barely eats would be more detrimental to his health than letting the smaller numbers of eosinophils be present. So right now the plan is to randomly treat with steroids to wipe them out when needed. normally that would be the band aid effect but Jax needs the band aid to be able to feel well enough to regain an appetite and develop the ability to eat normally. It is a slow road but I just want him feeling better by the time kindergarten stops. Kids shouldn't have to feel this way it breaks my heart to see them in pain. He is still throwing up a cpl times a week but it is better and has been having less stomach aches. He is not doing as good with drinking his supplemental drinks but were trying. Just have to be sneaky!! he is also on a probiotic which is helping and his daily steroid. still a work in progress....
As for our family in general. We moved from our 3 year old 3600 square foot beautiful home to a 1000 square foot apartment... yes I said apartment....I feel like we reverted 10 years... its really hard to adjust for all of us. Everything is brand new. I love my new washer and Dryer... that's about all. Lol I really hope that we do well here and can last this short lease. I hope that we save enough money to pay for the kids medical bills and formulas without destroying ourselves financially. We have already been there with the medical bankruptcy... I am not going to spell check this post because I am too lazy... and have to go get the kids from school. Sorry I do know how to type... lol I swear.... BYE

YES!!! A Pumpkin Choclate Chip Muffin! And it is soo good!

This morning we made Pumpkin chocolate chip muffins! And they are delish!

Heat oven to 350

1 Cup canned pumpkin
1/3 Cup Oil (Canola is soy free...)
1 Cup Sugar
1/4 Cup Rice or Hemp milk ( soy too if you can tolerate it)
2 Teaspoons Vanilla
11/4 Cup Flour ( we use "Megans" flour mix I will copy and paste it below)
1/2 Teaspoon of Baking Powder
1/2 Teaspoon Baking Soda
1/2 Teaspoon Cinnamon
1/4 Teaspoon Salt
3/4 Cup of Semi Sweet chocolate chips ( Enjoy life brand at Harmons is soy free too! yay!)

Add Pumpkin, oil, sugar, milk (whichever you use) and vanilla. VERY slightly mix together.
Then add Flour, Baking Soda, Baking powder, Cinnamon, salt, and chocolate chips.

DO NOT BLEND... Again very slightly mix together, fill muffin cups and cook for 22-24 min. Makes 12 I cant believe everything that is left out of these for how good they taste! Love Them!!

Megans Flour mix I copied from her blog!

1/2 c brown rice flour
1 c sorghum flour (or chickpea flour)

1 c tapioca starch
1 c potato starch (or corn starch or arrowroot)

1/2 c quinoa, millet, or amaranth flour

3/4 c sweet rice flour

add all and blend in food processor.

Over due post...

Where do I start? The last week and a half has been a crazy one. RSV is here and everyone but Gary has had the horrible, (and I Mean HORRIBLE) Flu. So I havn't had as much time to post about the tests and such also happening in the midst of the flu...On Tuesday Jaxen had his scope. We were worried it wouldn't happen because his asthma has been bad. We did not do the prescribed round of steroids because we wanted to get the most accurate results we could. Jaxens anxiety about the dr the past year has made us prepare for certain situations a little better. We decided to give him some verset before the scope so he would be relaxed. Not only was it aqward to see him so out of it but slightly entertaining I must admit... It went Perfect. He was happy as pie no explosion of petechia, sobbing, screaming, or fighting. Instead he was giggly and waved bye at me as they took him into the procedure room. What a difference it made for us both. I am so glad we did it that way. When Dr Harnsberger came out she said the pictures actually looked great much better than Tielers. but she wanted us to wait for the biopsy. This morning she called with Jaxens results. 15! Only 15 esoniphils! GREAT! So does he not have it? I guess having zero is normal but because they are so low and not damaging his esophagus we don't need to do the elimination diet like Tieler is doing. Instead we need to remove the allergens ( beef, chicken, corn, and white potatoe) along with avoiding as many of his environmental, pet, and dust allergens as possible. That is not all she continued to say...(boo) They also discovered Jaxen has a severe enzyme deficiency. A Lactase deficiency I guess some people with a lactase or lactose intolerance have a number of 24 or up to 58 she said Jaxens was 1.9 (non existent) I think 60-70 is normal. She said he did have some damage in his stomach and intestine from the fermented un digested Lactase. So we MUST completely remove lactase from Jaxens diet as well. And give him some supplemental nutrition as well. Hopefully for Both Jaxen and Tieler it won't be a permanent requirement. I just want to get them well. Completely changing their diets and medications and caring for their medical needs is overwhelming, I feel like I am in quicksand and I'm always right underneath the surface with and arm out or something... This week as been paticularly hard as well because of the Flu. We don't do flus well her there is no simple runny nose at our house. Poor baby Boston is the most effected. Poor guy will soon be getting ear tubes like his big brother and has been getting Rocephin shots all week. He has been going in to the suction clinic sometimes twice daily. Hopefully it will keep him out of the hospital! He is still so sweet, even though he is miserable. I am so lucky to have such a cake baby.
On a more positive note.... I have found a super easy delsih pancake recipe at whole foods that Tie can eat! Jax can't because of the potato starch in it but it is called "Gluten Free Dreams" The brand is Cherrybrook Kitchen. I knew they would be good just smelling them cook. They are great! You just add rice milk and vegetable oil.... Worth every penny! Here is the website. They have tons of foods for kids with allergies... LOVE it! http://www.cherrybrookkitchen.com/
ALSO.... the Choclate Hemp ice cream at Harmons rocks... tie totally Digs it!

Another day at the allergist...

Today was rough. My poor Jaxen has so much anxiety. We planned on the allergist today to do some expanded testing on both Jaxen and Tieler. I fought with Jaxen this morning to get him to eat a whopping six mini pancakes... I felt bad because only 30 minutes later he threw it all up. Feeling defeated by 9:00 am is never a good thing. When we got to the allergist Jaxen went first. He lost it. It took me and my mom to hold him down while the nurse moved as fast as she could pricking his back. It is painful to watch and obviously painful to be the one getting pricked. He freaked out so badly that he had broken blood vessels (petechia) all over his eyes for head and temples. :( I felt terrible. Still do every time I look at his little face. Hopefully they go away soon! As for the allergy test.... Jaxen tested positive for Chicken, Beef, Corn, and white potato. Corn is so sad cause it is in everything especially everything that is sweet. Candy is my bargainer not for long...He is suppose to be getting his scope done next Tuesday. He is having a flare up of his asthma and the allergist insisted I give Jaxen some prednisone. I am not going to do it though; I am hoping that nebulizing can get him through it. If we give him the steroid it will be months before we can scope again. We just can't risk it. The GI said do not give him the steroid, to wait till tomorrow morning to talk to her. Hopefully we have some other options cause if it is worse they won't sedate him anyway? I hope were making the right decision. He told me last night that food didn't make him sick but it just got clogged in his throat. :( How sad is that? Tieler also had an eventful day. She is doing well asthma wise... Her skin is doing alright it could still use some improvement but it's not horrible. She tested positive for some new allergies today too. The most upsetting was SOY! She has always tested negative for soy. Always... and today positive along with chicken, oranges, and oats. So her new allergic list after today is: Milk, eggs, peanut, cashew, pistachio, hazlenut, rhye, oats, black walnut, oranges, chicken and Soy. Wheat still said negative. I was feeling like wheat was a culprit for the high numbers on her scope since she had a prior positive prick and RAST for wheat but it has shown negative since she was 18 months. So maybe it is the large amount of soy and chicken? Who knows EE is crazy and it changes all the time! I came home feeling like crap. I need to pull myself out of this slump so I don't rub off on my poor kids that are the innocent victims of EE but my heart hurts. We have a month of hell before us. I already feel done.... We decided we MUST move. I love my home I feel safe. It is clean, and big, and beautiful. We cannot afford it though- with the new cost of the supplemental formula and the medical bills. We have been looking like crazy the last few days and there is nothing out there. I feel hopeless. Tomorrow is a new day. I hope it is better than today. BTW, I am so lucky to have kids that aren't full of Cancer. A warm roof over my head, a husband who loves me and is going through this every step of the way by my side, My awesome and amazing mother... wow I can't say enough about her. She is the best mom ever!!! And my GREAT FRIENDS and FAMILY. Reminding myself of the positive things is helping me right now... I am surrounded by LOVE. Thank the lord. It is what will get us through this!