Update

Sorry it has taken so long for me to update.  I really had to get it all sorted out in my head first.  So first, Grace is doing so much better.  She is feeling better and eating more, and not throwing up nearly as much.  She is only eating Elecare and brown rice.  The sweet potatoes didn't hold well in her tummy.

So here is the diagnosis of Friday:
Doctor #1: (at Children's National) Wanted to start from the beginning, insisted that it is multiple food allergies.  He gave us his email to have weekly updates on Grace.  Asked us to increase her Zantac since she is heavier and only give her Elecare.  We are giving her rice too because It makes her body produce too much bile (the Elecare does).    He reassured me that she is thriving because she is so heavy, and actually told me that she is TOO heavy.
Doctor #2:  (the allergist)  Said that he has reviewed her chart and strongly feels like she has Eosiniphillic Gastroenteritis. He said that if she were his child he would do the biopsy, but he was also under the impression that she would only be sedated (that no anesthesia would be used).
Doctor #3: (her new PCM) Said I am on the right track.  Gave us a referral to a nutritionist, but since she is not eating anything doesn't really do us any good right now!

So here is where we are at...
We need to decide if the "bandaid" (elecare and elimination diet) is sufficient for now, and delay the scope and biopsy... or do the biopsy now.... there are risks to both.... but Tony and I are leaning towards waiting.  My main concern is her being allergic to the anesthesia.  She gets ill with vaccines so I would be afraid the anesthesia would make her throw up... which is something I need to discuss with the doctor.

I have been realizing how worried I have been.  Worrying is a sin.  I have really been able to allow Jesus to work in me.  Show me His love and know that He is in control.  I am appreciative that she is alive, and this is a non-life threatening illness (although it could be if it gets out of control, we have it under control now).  Grace is different... and I need to accept that there is no "easy fix".    I will probably struggle with this over and over... but isn't that like all sins?  Just when we think we have it under control we slip up again.

1 John 4:18 "There is no fear in love.  But perfect love drives out fear, because fear has to do with punishment.  The one who fears is not made perfect in love"

I need to accept God's love for what it is: perfect.  Allow him to drive out my fear and worry.  God is not punishing me... "His love will quiet your fears and give you confidence" (NIV study Bible notes)

Col Shoupe

This morning I was going to skip PWOC and go straight to get things handled with Grace's referral.  I ended up going to PWOC because Tony couldn't watch Addison until later in the morning.  After my class my class teacher prayed for the bills to be covered.  Then we all four had lunch together.  I was in no hurry.  I felt God was in control.

I went to get a referral with her PCM.  I needed to make an appointment.  We got an appointment for tomorrow at 2:40.  Just enough time after the allergist.  

Then I went to Patient Advocacy.  Filed a report.  The lady came back with a man named Col Shoupe.  I explained things to him and that we would have to pay out of pocket for the appointment.  He immediately said, "no"  it will be taken care of.  Within 1 hour the referral was complete and ready for the appointment tomorrow.  We don't have to pay for it.  He was also able to change our PCM to a doctor that we can actually get an appointment with.  I was in the right place at the right time.  BECAUSE GOD PUT ME THERE.  He "has plans to prosper me and not to harm me and to give me a hope and a future"  (Jeremiah 29:11 revised to fit me)  "He has plans to prosper Grace and not to harm her, to give her hope and a future"  

God is working all in this!!!! Please continue to pray for our appointments tomorrow!  We so desperately need your prayers.

Wendy:  thanks for talking to me today!  I keep thinking of "telling the doctors what you want done".... That will be in my mind tomorrow as I speak to Dr. Snyder.  

Tricare

When I started this blog in July of last year, over a year ago, I didn't write anything.  I simply named it "On God's Time".  Then I forgot about it.  Today I feel so blessed for the name of this blog... ON GOD'S TIME.

I cried a lot today... first was because the military GI doc called (well her nurse actually called) to schedule her upper and lower endoscopy.  This made me picture my sweet little baby sleeping on a table while a procedure is done to her.... by a doctor I don't feel like has my daughter's best interest in mind.  Then I think... what if she is allergic to the anesthesia? And a whole list of other things that made me sad and cry.

Second, a little while later, a tricare lady calls with a very official sound to her voice and asks me to verify all of our information... so I do.  Over the course of two phone calls, I am informed that because her primary care physician did not request this second opinion referral that it could be denied and that it will take longer than normal to process.  The lady was kind to me, and asked me what was going on... and like all of the other ladies I told them and started crying... the she was very willing to help.  She told me that she will send it as urgent and see if someone will manually override this "special processing" and to give her a call tomorrow to see if it was approved.  Basically if it is not approved, then we will have to not go to the appointment or pay out of pocket.  Tony and I have agreed that if it is not approved that we will pay out of pocket for the appointment.

So, on top of all of this, the second opinion referral is only good for two visits and no sort of treatment.  I will have to get that from her primary doctor.

Update on Grace:  She has this "pimply" rash on her face and some eczema and has been spitting up all day.  She threw up once and it came out of her nose and I assume it hurt pretty bad because it made her cry.  She doesn't want to sleep, and when she falls asleep she wakes up crying in pain.  We now have her in regular diapers (in opposed to cloth) because she has had really acidic stools and now has a diaper rash that is beyond healing of the airy cloth diapers.

Something that made me smile:  When I was crying on the phone to the tricare lady (her name is Cynthia) Addison got her pretend phone and sat beside me and pretended to cry really loudly.  At first it was annoying then she says (while fake crying loudly) "please don't die, please don't die" do the pretend person on the other line.  I smiled.  A few minutes later I was still crying and she sits next to me and says, "are you sad because Grace's doctor said she is allergic to everything?"  I said, "yes I am".  She said, "Awww poor mommy, you need a hug" and gave me the sweetest hug and made me a picture. :D

Although I don't like what is going on... I know it is all "On God's Time".  My goal is to remember that before every blog there will be written "On God's Time:....."

We have a doctor's appointment: ON GOD'S TIME

And God's time just happens to be fast.... I am sooooooo thankful this morning!  I got up and immediately started to call around to the phone numbers my friend Amy Harvey posted on my facebook this past weekend!  They were exactly the phone numbers I needed!  I called tricare and it was so easy to get a second opinion referral!  She told me I could look up a doctor and call back with my option!  So with the information Lauren Hodges posted on my facebook, among other sites, I looked up doctors at Children's National Hospital!  I looked up all of the GI doctors except for the Cheif, Joseph Snyder.  Whom I just assumed I wouldn't be able to get an appointment with.  I called to make an appointment with a lady named Laura... She didnt have an available appointment until mid February.  The lady asked me what was going on, and so I told her.  She then told me that Joseph Snyder had an available appointment on Friday!  I am so excited!  So I snagged it, and then called back tricare.  The lady put him as her referral and said it would take 2-3 business days for it to go through... just enough time until the appointment!  I was telling the lady at tricare about everything and she started crying tears of joy with me!  She was so happy to help me.  At first she couldnt find that doctor, and I told her what was happening.  I told her I dont know if she believes in God, but this was an answer to prayer.  I felt the Spirit moving in me to say that to her.  Her attitude immediately changed, and this is when I proceeded to tell her why this was so special to me and Grace!  Then we cried together!  God has been showing me that He is taking care of Grace.  She also has an appointment on Friday with the allergist on post at 1pm, just enough time to get back and go to both appointments!  when looking on the site, they even had Esohiphillic diseases as one of the things listed that they treat!  I feel so blessed that God has allowed this all to work out so smoothly!  I am so thankful!  Now prayers that the doctor will look past her smily chubby cheeks (and think nothing is wrong) and see the pain she is in, and work QUICKLY to figure out what is going on with my sweet little baby!

By the way here is an update on Grace:  the past two days she has been waking up at night (which is a way I can tell her stomach is hurting).  Yesterday she had two bottles during the day and one in the middle of the night.  She is keeping sweet potatoes down and her stools have started to harden up.  She is not really wanting to eat, but her symptoms are subsiding.  Last night when I was feeding her her bottle, she actually shrieked in pain.  So the elecare is still hurting her tummy... She isn't wanting to sleep a lot and pretty whinny during the day... Hopefully this will all be able to be managed with this doctor!

so frustrated with all of the doctors

I am so upset that Grace's GI doctor has not done a single test on her.  We have seen her at least 10 times and she has yet to suggest any sort of testing.  Every time we visit her she seems so lackadaisical about everything.  She kept writing GERD in her chart and didnt even put the dairy and soy allergy in until the end of December.  When she said she agreed with Esoniphillic Gastroenteritis it was because she "thought that all along and didnt want to use those big words because most parents dont understand".  This is absolutely ridiculous, and I feel so stuck because the other doctor we saw didnt really want to say anything but exactly what she said.  He kept telling me how they have "so many patients with EGE" and then in another sentence say, "its so rare there are only 2 patients per GI doctor".  So he was lieing to me too... I feel like the military doctors dont care about my daughter.  He also acted like she was so well off... SHE CANT EAT ANYTHING WITH OUT GETTING SICK... to me this is not well off.... I really want to see a non military doctor but I dont even know where to start with dealing with Tricare... and we cant switch to standard... it would be too expensive to pay all of those copays.  On one hand I am happy to not have a co-pay, but on the other I know that something is wrong with my 9 month old, little baby, and no one cares to try to figure it out.... I just want to scream.  Yeah other people have worse issues, but this is our issue, and to me it is big, I am tired of seeing my baby in pain and I feel like if there is at least a real diagnosis we can start to deal with it.  Right now I am just thrown into nothing... absolutely nothing... no where to look for answers, no support, nothing.... I am so overwhelmed and no one is here helping me... I feel like the only one that cares... When she eats her bottle she is scrunching up her stomach in pain... What am I supposed to do???????????  I feel so stuck like I have no where to go, no answers... I am not satisfied with a half hearted diagnosis, all information on that disease says that a diagnosis requires a biopsy.... a BIOPSY.... you cant even diagnose someone without a biopsy and they are doing that... what if something else is wrong with her, what then?  They would have no idea because they didnt check... it would be so easy to collect a stool sample or take some blood, it is a lot less painful that what she has to endure right now...

Tomorrow is Addison's FOURTH Birthday!

I cannot believe that tomorrow will be Addison's fourth birthday!!  My goodness how time flies!  Tonight we went to Chevy's Tex Mex to have dinner with my brother and his girlfriend, and our awesome neighbors!  Addison had so much fun and was very excited to be the center of attention.

A picture of us this past November!

starting to blog

I saw my friend Tiffany post about how she wanted to blog to help keep her accountable!  I thought, what a great idea and well here I am... copycatting her!!! :)  I started a blog after Tony went back to Afghanistan from R&R, but never followed up, much less posted anything.  I would like this to be a place where I can share the things going on in my life, which right now entail a lot... this being said... Grace is currently getting fussy so I need to wrap this up... I hope to update soon! :)