Hunting, Santa, and Moana

While we had Ebbie's 4th Annual Ornament Swap Austin and bo went hunting. 

He looks so grown in this picture!

Red eyes but still cute

And here are a few random pics from the past couple of months - doing what they love. 

Also, we saw Moana this weekend - we absolutely loved it.  We came straight home and downloaded the soundtrack and were rewarded with this precious nugget dancing for us. (Also, Bo shot his first duck this weekend! A mallard - with my grandfather's gun that is over 35 years old - insert crying emoji here!)

North Carolina

So......we went on our annual mom/kids trip this summer to Brevard, NC.  Wanted to get some pictures in the digital scrapbook!

We're nothing if not tight-knit!

Made a stop at Dollywood on the way

Deer tree at Skinny Dip Falls

Ignore how we look.  Just did the longest hike EVER

For an awesome Video:

https://vimeo.com/188610905


Always a great time with this group.  LOVE THEM SO!!
Deidre

Sadness

We just finished one soccer game for Ebbie and are about to start her second one of the day. I am so amazed by this girl. She doesn't feel good and yet she still comes out and tries her best to play. 

In between games we get a glimpse of how she's feeling...not physically but emotionally. 

She is struggling. Her health issues affect so much more than her physical self. Her confidence is shaken. Things that use to not bother her do now. Whether it's missing a goal or being the only girl not interviewed for a class project -things are making her feel bad about herself. 

Pray for my girl. She is hurting and therefore so is this moma. Where we see pain He sees purpose. 

Love y'all

"When you see broken beyond repair I see healing beyond belief" -Matthew West "Mended"

Ebbie's EoE

Since we've gotten back from Boston, I haven't had a chance to update everyone on the latest. I sent the following email to the Ebbie's principal, nurse, and teacher. Because I'm tired I am just copying and pasting that email so keep in mind it is geared toward the school and some of it might be repetitive.
We ask for continued prayers!!!

P.S. Mass General for Children is Amazing
This picture is Ebbie getting a little special treatment before her scope.

----------------
I wanted to send an u­­pdate on Ebbie and h­o­pefully get us all ­on­ the same page for­ th­e upcoming school­ yea­r.

As a brief background­­, Ebbie has a diseas­e­ called Eosinophill­ic­ Esophagitis. In s­hor­t, she has allerg­ies ­that cause a bui­ld up­ of eosinophils­ (whit­e blood cells)­ in her­ esophagus.  ­It is be­lieved to be­ primarily ­food alle­rgies but ­as they le­arn more ab­out the d­isease they ­are seei­ng that it co­uld als­o be environme­ntal a­llergies.  In c­hildr­en the disease c­ause­s stomach pain an­d v­omiting. The only ­wa­y to confirm diagno­s­is is through biopsi­­es of the esophagus -­­ over the past year ­a­nd 1/2 she has had ­6 ­endoscopies with b­iop­sies.

Ebbie has a "signific­­ant case" of EoE (15­ ­cells per high powe­r ­field is normal, 4­0 i­s when it is diag­nose­d, Ebbie has 115­).  W­e have gone thr­ough a­ year of cycli­ng thro­ugh eliminati­ng food and having s­copes. We­ went to an­ expert in­ Boston at­ Mass Gener­al for Ch­ildren in Ju­ne and h­ad additional­ allerg­y testing done­. Whil­e we assumed th­e nex­t step in treatm­ent ­for her would be ­an ­elemental diet (al­l ­liquid that would r­e­move any proteins fr­­om her food) they rec­­ommended she try one­ ­more elimination di­et­ along with an ant­aci­d.

We had our follow-up ­­this past week at Ma­s­s General. While th­er­e, she had her 6th­ sc­ope and it was co­nfir­med that this el­imina­tion diet didnt­ work ­as she still h­ad a hi­gh number of ­eosinoph­ils . We als­o learned­ that EoE i­s causing ­motility p­roblems wit­h her int­estines whic­h is the­ largest sour­ce of h­er stomach pai­n.
So....the doctors ga­­ve us a choice of st­a­rting the elemental­ d­iet or taking a br­eak­ and trying to ju­st t­reat her symptom­s. It­ has been an ag­onizin­g decision but­ after ­so long of el­iminatin­g different ­foods, we­ are all me­ntally dra­ined and h­ave decided­ to try t­o treat her ­symptoms­ for the next­ 9 mont­hs or so. Also­, we r­eally didn't wa­nt to­ start 3rd grade­ on ­an all liquid die­t t­hat may or may not­ r­equire a feeding tu­b­e.

So, even though that ­­wasn't as brief as I­ ­thought, I do have ­a ­few things I would­ li­ke for y'all to k­now.

1. Ebbie may not alwa­­ys look sick - but s­h­e is.
2. I really try to t­­alk to Ebbie about b­e­ing present at scho­ol­ even though she m­ay ­not feel 100%. La­st y­ear we really st­ruggl­ed  to find a b­alance­ in when to co­me home­ bc the pain ­was real­ly bad and w­hen to st­ick it out.­ And of co­urse,  I m­ay sometime­s need he­lp from the ­one who ­is spending 7­ hours ­a day with her­.
3. I do not know wha­­t this year will loo­k­ like. In my dreams­ w­e rock along and g­et ­the symptoms unde­r co­ntrol and have n­o iss­ues. If that do­esn't ­happen we may ­change ­things but as­ of now,­ she is eati­ng pretty­ much what ­she wants.­ Meaning, ­I will moni­tor her d­iet and send­ her lun­ch on most da­ys but ­there will be ­no nee­d for her to br­ing s­pecial cookies t­o sc­hool to have when­ ev­eryone else is hav­in­g birthday celebrat­i­ons.
4. The HARDEST thing­­ by far once school ­s­tarts back are the ­po­tty issues. As you­ ar­e all well aware,­ goi­ng to the bathro­om at­ school is unco­mforta­ble and kids c­an be m­ean. Some thi­ngs were­ said to Ebb­ie last y­ear - some ­she told m­e about im­mediately a­nd some t­hat she did ­not tell­ me about unt­il this­ summer. I hav­e begg­ed Ebbie to tal­k to ­me about anythin­g th­at makes her unco­mfo­rtable and hopeful­ly­ she will. Ultimate­l­y, Ebbie is resilien­­t and handles most of­­ this in stride but ­i­t does get hard som­et­imes.
5. And lastly! I don­­'t want Ebbie to fal­l­ behind in her scho­ol­ work. I know Ms. ­Hol­land is a wonderf­ul, ­experienced, and­ cari­ng teacher and I just­ ask that if y­ou noti­ce even the s­lightest­ thing we sh­ould work­ extra on t­hat you le­t us know.

Thank you all so much­­ for spending the ti­m­e to read about wha­t'­s been going on an­d l­earning more abou­t Eb­bie's disease. I­ appr­eciate all you do to ­provide a cari­ng envi­ronment for m­y kiddos­!

Deidre Barbour

Good News from Boston

Ok!! Had scan and x-ray this morning and then met with Dr. Katz and Dr. Hesterberg again.

Ebbie does have a "significant case" of EoE and some intestinal blockage but they believe a cleanse and then following a dairy-free diet as well as one that is free of fruits that could cross pollinate with birch trees (since this was one of her new highest allergies!) will make her symptom free. I'll have to do some research on exactly which fruits that will be but it includes apples, peaches, cherries and nuts such as hazelnuts and almonds. 

We will come back to Boston on August 4th to have Dr. Katz do Ebbie's next scope. 

We are so thankful for the opportunity to see this group of doctors and feel extremely blessed that we do not have to do the elemental diet for Ebbie. God is so good to answer our prayers and the prayers of so many who have prayed for us and Ebbie. 

Love you all! 

Deidre

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Today's appointment

Well, we went through a lot of information today with 2 doctors and 2 nurses. Spent 3 hours with everybod-Everyone here is so nice and knowledgeable. Ebbie did have some additional allergy testing done and tested positive for a lot of things...mainly trees! Not sure how this affects the EoE yet. She will have 

a sonogram and stomach x-Ray tomorrow. 

Dr. Hesterberg, the allergist, thought we should go ahead and start the elemental diet. Dr. Katz and the dietician thinks we should try another food elimination diet. There are pros and cons to each and Austin and I will prayerfully consider each tonight and the doctors will give us their final recommendation after tomorrow's appointment. 

We've enjoyed going to eat and walk through some of the places we used to visit when we lived here. We even got to ride the carousel before the doctor's appointment today. 

Still wishing Bo was with us but we're so proud of his decision to stay and go to his D1 tryouts! 

This kid

Took Bo to the dr today and he is 5'2" and weighs 96 lbs. (just for the record he also wears a size 10 shoe!)

This is him being super embarrassed by me saying "Awe..Bo! You're getting so big. Stop growing. Be my baby!"

One more thing....

Bo spent a few days on crutches last week bc he hyperextended his knees.  All is well now and he was fine to play in his final soccer tournament this past weekend.  He has tryouts coming up in the next couple of weeks - can't forget to pray for that as well!

Mine and Ebbie's favorite song.  ENJOY.... 

https://www.youtube.com/watch?v=gFeZB7Uz8yg

Deidre

Eosinophillic Esophagitis and Mother's Day

I had the most beautiful mother's day! Spent part of the day at the soccer fields and the other part in the backyard with all three of my favorite people.

For those who don't know, we got Ebbie's test results back from her scope on April 27th.  The doctors measure how many eosinophils are in a high power field.  <15 per hpf means you are clear of the disease. Ebbie's are >100 per hpf.  This is obviously a big blow for us since for the last 7 weeks we have avoided all dairy, soy, wheat, egg, corn, fish/shellfish, tree nuts, legumes, cantaloup/watermelon. Her doctor said she could do a course of the swallowed steroids or go ahead and do the elemental diet.  We opted to give her the steroids so that we can get finished with the school year.  The elemental diet is an all formula diet that takes out all the proteins that causes the allergic reaction.  If she can not tolerate drinking the formula (which I've read tastes like vomit!) she will have to do a feeding tube.  I am in the process of collecting all of her medical records to send to Boston or Cincinnati in preparation for our trip for a second opinion of treatment options.  Please pray for us that we get to the right place that will provide the best treatment for her and that we can get in quickly as most places have a 3-4 month waiting time which would put her there as she is beginning 3rd grade.

We have some people trying to help us get in earlier at these hospitals.  Austin told Ebbie tonight that she has some really important people trying to help her.  Her response.... "Well, I know you and moma are trying to help me. Y'all are important to me". I love her sweet spirit.

Please God don't let her spirit break. 

If anyone is interested in learning more about Eosinophilic Esophagitis, how it hurts your body, treatments, etc. here are a few websites that are helpful. (Especially as Eosinophilic Awareness Week is coming up May 15-21!)

http://www.cincinnatichildrens.org/health/e/eosinophilic-esophagitis-ee/

http://www.childrenshospital.org/centers-and-services/eosinophilic-gastrointestinal-disease-program

http://apfed.org

http://curedfoundation.org


I have a lot of worries about what Ebbie's future holds but a sweet friend sent me the video below.  I'm trying to remember daily not to worry about the "what ifs". To remember that tomorrow He will give us NEW mercies.

https://www.youtube.com/watch?v=S2BjqdUdg-M

Love,
Deidre

Prayers are working!!!

Thank you for all who have been praying for Ebbie! Her rash is significantly better today. I am hopeful it will continue to heal!! 

I'm excited to have a short time alone with Austin (about 30 hours). We're making a quick trip to Texas and back. I've only spent the night without the kids one time since November so I'm looking forward to a little recharge :)

P.S. Enjoy this picture of Ebbie - partly naked on  the couch enjoying a book (letting her rash and medicine dry). Ha! 

Love, 

Deidre 

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This too shall pass...

Sometimes it feels like being kicked while you're already down.

 Ebbie has had a significant rash for the past 12 days and after seeing 2 doctors we're still not sure if she has Zika virus or something called pityriasis rosea. Honestly, both options are not great but with Zika it should at least be over soon. The pityriasis rosea could take between 6-12 weeks! It's already so hard on E to be a girl in second grade who has "bathroom issues" but now she is dealing with a rash ALL over her body (face included). 

She has her next scope on Wednesday 4/27. We have been on the very strict diet for the past several weeks so if this scope doesn't come back clear then it really will feel like a punch in the gut. 

Bo is feeling a little left out by all the focus on Ebbie but otherwise he is doing good. Great grades, participated in the state geography bee and finished around top 15, playing lots of sports, etc. 

So, obviously we need prayers! Pray that Ebbie's rash will clear up quickly, that she'll have a clear scope (then we can introduce a food back but that also comes with stress bc I could intentionally be making her sick!) that she can deal with the stresses of having these issues at school (and that kids will be nice!).

Pray for Bo to hang in there! 

Pray for me and Austin to be sustained through this. It's hard when we want to fix it and we can't. Also, it's hard to spend hours!!! in the kitchen cooking foods that she can actually eat. 

Lastly, that we can all see that God is still good (especially so) in hard times. 

Thanks! 

Love, 

Deidre 

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What we're up to

We had a great time at the beach for Bo's soccer tournament. I'm so proud of him...He is really developing into a great soccer player! Plus he's such a nice kid.

We got to spend 1 day at the beach but apparently that was plenty because we all came back sunburned! 

Ebbie was sick much of the time but she has the best attitude. We are now on the super strict diet. Please pray we find the cause of her stomach issues and can avoid more complex treatments.  

We came back to some high water in our back yard but thankful our house it on a hill!! 

Deidre

Park City

I've prayed since Wednesday that God would just show me the exact cause of Ebbie's allergy. Like Austin said, "I think He answered in a big way". She didn't test positive to a milk allergy but since since milk is an inflammatory food we have just been trying to avoid it in large doses. After the last test results the plan was to avoid all dairy when we got back to Jackson. So since we're on vacation I let her have a bowl of ice cream at dinner last night. Needless to say....she's been throwing up for the past 9 hours! 

All yesterday she just kept saying "I like to go fast!" So I hate that she can't go out today. Praying she feels better this afternoon! We'll definitely need prayers over the next few months while we avoid all dairy....it's going to be hard!! 

Love y'all! 

Deidre