Surgery Date set

We had our consultation with the surgeon last week. He was a little apprehensive about the G-tube at first because Tanner's weight is in the 50th percentile, however after hearing our story and learning that Tanner has been formula dependent his whole life made him see the light. The bottom line is that Tanner will not drink the Elecare anymore and it will not take long before he falls off the growth chart. Tanner also gained 4 pounds in the month that he has had the NG Tube and he is doing so good. He has energy like I have not seen in a long time. G-Tube surgery and and endoscopy are scheduled for November 28th. He will also have an upper GI series, also known as a modified swallow study on November 2nd. He has never had a swallow study and I am a little nervous because he has to drink a berrium solution and I have no idea what is in it and how his body will react to it. I am also nervous about the swallow study because they will be giving him different thicknesses of the barrium and tanner has some sensory issues and it may be a real fight to get him to even put that in his mouth let alone swallow it.

I have some anxiety about the endoscopy for a few reasons. For one Tanner has been complaining about food getting stuck in his throat. This is a big red flag that he has more damage in his esophagus than before. Also Tanners GI is not available on the 28th to do the endoscopy and  I am not familiar with the GI that is going to do the procedure. I just don't like the idea of so many "cooks in the kitchen" so to speak.  I can not reschedule because Tanner really needs this surgery and endoscopy as soon as possible.

We also recently found out that the GI we love so much is moving to the east coast. I really do not like "Dr. Shopping" especially since once you see a Dr. at a practice they will not allow you to change to another in the same office. I think this is ridiculous. You should not be forced to stay with a Dr. you are not comfortable with. Our current GI has the same  views we did on quality of life and when we should change diet or add steroids. I hope he can refer us to someone with similar views.

We appriciate all your thoughts and prayers. Thank you for taking time to read this blog and stay up to date with what is going on with Tanner. It really does mean a lot to us.

Can not believe its been over a year

I cannot believe it has been over a year since I updated this blog! So much has happened over the last year. In July 2011 Tanner had an endoscopy and the results were not good. He had 80+ eos and furrowing (scar tissue) in his esophagus. The foods we were trialing at the time were Turkey, potato and strawberries. We decided that taking these foods away was not an option as that is all Tanner will eat. The only other option was to try steroids. The GI put him on slurry of budesonide (pulmicort respules like used for people with asthma) mixed with 8 packets of splenda. The idea behind this is that the mixture would coat his esophagus and neutralize the eosinophils

After 6 weeks we had a follow up with the GI and I was excited to report that Tanner has told me he feels better than he ever has. He thought it was normal for your tummy to always hurt. Well the GI threw a curve ball at me when he said well we are going to stop the steroid and when/if he starts to feel sick again we will restart them. When I asked about trialing new foods he informed me that was not going to happen and he recommends we remove the turkey, potato and strawberries. When I expressed concern that all he will not eat anything else the GI said “well then we will have to talk about a feeding tube” Tanner broke down crying and we left the office.

Since then we have changed GIs and we love our new Dr. at our first visit he was concerned that Tanner had not gained any weight in 18 months. He is not under weight but if he continues to get taller and not put on any weight it won’t be long before he is underweight. Also since Tanner started 1^st grade he refuses to drink his formula at school so he was not getting the nutrition he needed. When he asked if we have ever thought about a feeding tube Tanner instantly got the look of fear and sadness in his eyes. The Dr. sat down next to him on his level and said “Tanner you know if you end up getting a tube it is not a punishment, it’s not because you did something wrong. This instantly calmed Tanner down. We left with the plan of trying a Prilosec for 6 weeks and then scoping because many of Tanners symptoms sounded like they could be reflux.

A few days later Blue and I were talking and decided that we are tired of every meal being a fight to get Tanner to eat something. Not to mention the fight to get him to drink enough Elecare. We sat Tanner down and talked to him about a feeding tube. He was a little upset at first and then I told him “wouldn’t it be nice to not have to drink Elecare anymore?” and he liked that idea. After about 20 minutes he came to me and said ok mom I am ready for a feeding tube.

I called the GI the next day and he wanted to do an NG tube (nasal/gastric tube goes through the nose and into the stomach) temporarily first to get some nutrition in him while we are waiting for an appointment with the surgeon. Tanner was admitted to the hospital to have the NG inserted and to train me on how to replace and care for it. We have an appointment with the surgeon to have a G-tube placed (the more permanent feeding tube surgically placed through the abdomen into the stomach.

I am so proud of how well Tanner took to having the tube. His friend Nate (who also has EoE and had the NG tube now has the Gtube) goes to his school. He came in Tanners classroom and he and Tanner gave a presentation on the NG tube and answered all the kid's questions. I think this really helped the other kids understand and not tease him. He has not had any kids make fun of him. They ask a lot of questions because they are naturally curious. I find that more adults give him funny looks than kids do.

Since Tanner got the NG tube he is a different child. He has so much energy it drives me crazy. His face is filling out and the dark circles under his eyes are gone. I have no doubt that we made the right decision.
Thanks for sticking around and reading all this I know it is very long. I will try to update you all more often.

Big Brother Tanner

We have had a few things to celebrate the last few months. On June 17, 2011 Tanner became a big brother to Chance Flint Wood. Tanner is an awesome big brother, he loves his little baby brother and is very protective of him.

Many of you know Tanner has been drinking his Elecare (elemental formula) out of a baby bottle. On June 1, 2011 while talking to Tanner about starting kindergarten and drinking formula at school he was concerned about drinking a bottle at school. He made the choice to throw his bottles in the trash and start drinking from a cup! This is huge and he has been doing great with it. There are some days that are a struggle, but I can understand it has to be hard to drink 32 ounces of something you really do not like every day. We saw the G.I. last week and there was some concern that he has not gained any weight in the last 8 months. I think it has a lot to do with getting rid of the bottle and transitioning to a cup. I have started to notice he is looking a little pail and has some dark circles under his eyes. We are hoping that he has put on a few pounds by his endoscopy in September. I really do not want to have go back to the bottle but will if it means avoiding a feeding tube.

Now for whats going on with Tanner and his EoE. Tanner has trialed a few foods since our last blog entry including blackberries, blueberries, avocado and celery and the most recent banana. All were a fail some caused hay fever like symptoms (sneezing, itchy eyes...ect) and others caused stomach and/or throat pain. We did put a hold on food trials for a few weeks to allow Tanner's body time to heal. We hope to find a few new foods to add before his next endoscopy in September.

For the most part Tanner is doing good. As always we appreciate all of your prayers.

It has been a long 6 months of food trials!

Over the last six months Tanner has trialed apples, sweet potatoes, cantaloupe, enjoy life chocolate, cucumbers, cantaloupe, rice, olives, pork, cod fish and sun flower seeds. Cantaloupe, enjoy life chocolate, cucumbers and pork were all an almost immediate fail. Tanner started complaining of stomach pains within a week. Apples, sweet potatoes, rice, olives, cod fish and sunflower seeds did not cause any symptoms and Tanner's Dec. endoscopy results came back great! We officially have 6 safe foods! The GI has given the go ahead on more food trials. Tanner is now on day 5 of a turkey trial and is doing great. I am hoping he continues to feel good so that we can keep a meat. He was getting very tired of cod. Our next goal is to find a safe veggie.

Thank you all for keeping Tanner in your thoughts and prayers. It has been a rough year for him but we are confident that 2011 will be the best yet. Happy New Year everyone.

Cod good Pork and carrots BAD

Tanner is up to 4 foods. Apples, sweet potato, rice and the newest addition cod (yes fish). We have also trialed pork and carrots both made Tanner complain about throat and stomach pain. He loves cod and his favorite is fish stix. I have become very good at invinting new things to make with rice. I think I will write a cookbook 100 things to make with rice. The newest and a favorite is apple doughnut holes. Tanner said "can you make these everyday?"

He is doing great in pre-k and is so proud that he can write the letters, T, A and B. His teacher is always telling me what a great kid he is. I will share with you a few of the stories that I thought were awesome.
Tanners first day of school

1. There is a boy named Uriel in Tanner's class. Uriel is having a rough time with sharing and crys a lot about it. The teacher was talking with the boy and in the meantime Tanner drew a picture or Uriel smiling. He took the picture over to the boy and said "this is you when you are happy and having fun while sharing" the boy smiled and has been Tanners friend every since.

2. The teacher announced they were going to play a game about ducks. The teacher would tell a story about 9 little ducks on the pond and one flew away. At this point the kids were given 9 duck crackers and were supposed to eat one every time a duck "flies away." Tanner instantly said, "Mrs. Montoya, I can not eat those! How about I go get my apple chips from my bag?" The teacher and I were both so proud of Tanner for taking care of himself and finding a solution all on his own. The teacher did call me that night to apologize she had not thought about Tanner when coming up with this idea.

I am just amazed that at 4 years old Tanner takes time out to comfort someone that is having a bad day. I see God working through Tanner and I am a very proud momma.

Apples, Sweet Potatoes and Rice...OH MY!

Tanner has gained 5 pounds!

This is amazing news. With no symptoms and a positive weight gain it looks like Tanner gets to keep apples, sweet potato and rice along with his Elecare of course. He also got to move up to a booster seat now that he is over 40 pounds. He is very excited about that.

He is starting Pre-K on the 12th, which I am very nervous about. I am in the process of getting a hold of someone at the school to give me information about food allergy policy. I can already see this is going to be tough. I will keep you all updated.

Thank you for all the prayers they are working and Tanner is doing great!

Whats New

Well it has been a long time! We have been without a computer for a while so I have not been able to give you all an update.

Tanner gets to eat!

Tanner finished his 3 months of formula only. He had an endoscopy on May 14th and his scope came back clean. This is amazing! We really needed some good news. What this means is that Tanner can now start food trials. We got together with the allergist and came up with a list of foods that Tanner tested negative to being allergic to on skin and blood tests. Typically after 3 months and 3 foods another scope would be done to determine if the food has caused an increase in eosinophils. If there is an increase all three foods would be taken away and we would have to start all over.

When we went into the hospital for the endoscopy the doctor asked us if Tanner is having any symptoms (vomiting, diarrhea, rash...etc). When I replied that he did not but he has not had symptoms even when the eosinophi count comes back in the 80's. He told us that we needed to decide what our goal was. Are we fighting eosinophils or symptoms. In other words are we willing to have higher eosinophil counts as long as Tanner is thriving and not feeling sick or is our goal to have 0 eosinophil counts even if that means taking all food away again. When put that way we have decided as long as Tanner is doing well and is not sick we will continue to allow him foods. We will still do trials one month at a time just to be safe. This also means that we will be doing less endoscopy's. Maybe one a year just to make sure all it healthy looking and tissue is not damaged. After weighing all the options it just makes more since to do things this way. It can not be good to be put under every 3 months at such a young age.

Tanner is currently eating apples and sweet potatoes and is doing well. On My 14th he weighed 38 pounds and at his 4 year check-up on June 18he weighed in at 39.5. He may actually make it into size 4 pants this year!

Tanner's stay in the hospital

At Tanners 4 year checkup on Friday he received 3 vaccinations. He should have got 4 but the pediatrician refused to do the MMR without consent for the allergist. I was happy to hear that because I was stressed out about the egg in the MMR. So he got the DTaP and Polio vaccine in the left leg and the Chicken Pox in the right leg. Tanner got up on Sat. and dressed himself in pants so we did not see his leg all day. That night when Blue went to put him in the bath his entire leg was bright red and swollen. I called the allergist thinking it was a reaction. The allergist said it sounded more like an infection starting. He told me to give him Tylenol and put a cold compress on his leg. If it got worse we were to go to the ER but if not he would see us first thing Monday morning. On Sunday evening we were watching Toy Story (for the millionth time) and Tanner said "mommy can you fix this bump on my lip?" so I look over and his lip is swollen a little. So I go to the bathroom to get some benedryl and by the time I get back to him his lips have doubled in size. At that point I put him in the car to go to the ER. By the time we got to the parking lot his lips were triple the normal size and his eyes and cheeks were swollen as well. Then he starts complaining that his throat felt like something was stuck in it. If we were not in the parking lot of the hospital I would have used the Epi-Pen. \

We walk in and they take one look at him and start working on him. When I told the doctor I thought this was from a vaccine he informed me of how rare that is. I preceded to tell him that if there is a 1 in a million chance my kid would be the one. Then I tell him about Tanners leg where the shots were given and he looks at it and says yeah he has cellulitis (bad infection) in that leg. Tanner was admitted so that IV antibiotic could be given. Then it all clicked in the doctors head. He seems to think that Tanner probably did have a small reaction to the vaccine and then this infection started and Tanners body went into overload causing a very bad reaction that I am certain would have been anaphylactic shock had I not taken him in when I did.

Tanner spent 2 days in the hospital. He is home now and doing great. He just seems to bounce right back no matter what happens. Thank You all for the prayers and support. I don't know what we would do without such great family and friends.