Thurs. 3rd

Wow, where to begin? This has been such a hard road, I really can't even put it into words. Someone asked me recently why I don't just get out every once in awhile...well, I liken it to nursing twins (sorry guys) but once you're done with one (feeding, burping, changing) it's time to feed the next one and you feel like that's all you do all day and all night (at least that's what I can recall during that season of life that was such a blur!) It takes Ash a LONG time to consume a shake, we've even recently tried to reduce the size and instead of doing 3 big, do 6 small. I really can't explain it, but pretty much feeding her, bathing her (she does love her daily epsom salts bath), giving her all her supplements, taking her to appts, figuring out what the rest of the family will eat (although I have forgotten about them at times), calling dtrs, researching on the internet and maybe doing some laundry...that is how our days are spent!

I have to share the sweet moments of the day first...doing an hour of history with Brittany while Ashley slept this afternoon! Sounds crazy I know, but I haven't gotten much one-on-one time with Brit and Coop lately and Brittany really wanted to wrap up the chapters that we've had open for awhile. We typically meet every Friday to go over her History work for the week and today we really enjoyed our time together and we got 3 chapters done in an hour! And this brought me to tears...Cooper said today, "You know Mom, there have been a lot of hard things with Ashley being sick, but some good things too." So when I asked him what he felt those were, he said, "We've gotten a lot closer as a family, spent more time together, been less busy and prayed more." (ok, for those who didn't read further back on my blog...that directly speaks to 2 of the 3 things that I had been praying for months...go check them out!) Then Brittany chimed in, "and we've gotten to see the Body of Christ at work and our friends stepping up to help us." WOW...thank you Jesus! I did think the "stepping up" comment was cute because that's what I always say when I'm calling them out! Even when I feel like I can't pick up my head, God lifts me by the chin!

Now the big news medically. I probably can't do it justice, but will try. Once again, our Richmond dtr is beyond description. Her daughter had a medial emergency and she flew to see her today in the hospital, but YET she sensed my desperation and called the lab and had them fax the results. We have a phone appt on Monday to go over them in detail, but I will try to summarize (with the deciphering help once again of my incredible friend Tessa.) Basically, it's exactly what we latched on to earlier in the week. Ashley has virtually NO good bacteria in her gut and VERY high numbers for lots of bad ones. It makes me cry to think how messed up it is, but also makes me CRY rejoicing that we now have some answers! This will be a LONG road, probably many months to year (s) to heal, but TODAY is the first day along that road. The dtr immediately called in Flagyl for us and we started it tonight. There are several other supplements (probiotics, etc.) we will add to those that we are already doing, but I'm not even clear on all of them right now. And once again, when Ashley is eating again, we will strictly follow the SCD to starve the bad bacteria. By the way, several folks have emailed me that they have been on this diet and it has helped their IBS, Chrons, Ulcerative Colitis...something to look into if you suffer from any intestinal issue. But be aware, there are many medical dtrs that we have encountered that have never even heard of it!

Obviously I have learned a lot, but the most important lessons are to go with your mother's instinct and that you are your child's NUMBER ONE advocate! Seriously, several dtrs we have encountered have been unable to see the whole picture. If you left Ashley just to "take time" to "transition" through her Celiac, I shudder to think where we would have ended up. Also, dtrs kept telling me that she had a cold, the psych consult at CHOP even told me that she thought her throat clearing was like a nervous twitch to deal with her anxiety! I knew they were wrong and that we had to find the real answer. I am not exaggerating that she coughs up paper towel fulls of mucus all day long...no wonder why she can't swallow these shakes...she can barely swallow! Plus this totally medically validates her pain. I am not saying that there isn't counseling needed, I obviously believe that is an integral part to this medical trauma and I only wish we would have started it sooner. But the bottom line is that HER GUT IS KILLING HER! She's had this bad bacteria attacking her stomach since Sept and we probably held it at bay all fall with a probiotic, but then in Jan./Feb. it took off, that's when the mucus started. Addressing her lack of speech, sadness, etc...it is also totally validated (and don't ask me to explain this in detail) but her neurotransmitters on her urine test were soo low that those type of numbers can cause anxiety, depression and many other neurological issues. Ashley will not recover from this overnight, but PRAISE GOD for the beginning of the healing process!

So, TOMORROW...uuuuhhhh, can we just go to sleep and not think about tomorrow? I do have more of a peace than ever that she needs the tube. The Flagyl will take time to work and with the increased mucus, I really don't think she can reach her necessary intake...at least with her and us staying sane in the process. Like I said, it will give her a mental break from the trauma of the shakes and strengthen her. Please PRAY that the Flagyl will work quickly in helping her gut feel better and maybe help reduce the amount of time that we need the feeding tube for.

PLEASE PRAY for no complications with the tube and a very SMOOTH implementation! She is definitely scared and has been through soo much that this will not be easy...please PRAY hard tomorrow for her to be calm. Everything will go much smoother if she is. We are uncertain how long we will be in the hospital, but will keep you posted. We know that IV fluids are part of the plan, as well, hopefully, as a neurological consult to just check on the issue of gluten ataxia. We will keep the blog updated. Mike's dad arrived today and his mom is coming tomorrow, so that will be a huge help! We will both head in with her tomorrow and probably have Mike do nights and I will do the days. Please check the blog concerning visitors, thanks.

I was thinking tonight of how my heart has literally broken over and over again for her that, at times, I almost feel numb. But then I thought of how the Father's heart broke when He saw His Son suffering on the cross for our sins, and truly know that God can identify with my pain!

PLEASE PRAY HARD TOMORROW...clinging to Is. 46:4
"I am HE, I am HE who will sustain you Ashley. I have made you Ashley and I will carry you, I will sustain you Ashley and I will rescue you."

Grateful,
Lori

Thanks to the Kyners and Trivettes today for continuing to love on Brit and Coop...as Brittany said today...the Body of Christ at work as God intended it to be!!!

Oh, I can't end without adding this...my husband is amazing! He is calm when I can no longer be and level headed when I have lost it! This was a hard week for him as well, he gave up one of his all-time favorite things to do in life...take college boys to the Everglades! I know that some of you college boys are disappointed, but know that he wanted to take you SOO badly! He was still collecting canoes, trailers and camping gear up until earlier this week when the NG tube was quickly approaching. He cares deeply for you guys and we all naturally regret the timing of all this. I hope that many of you can join him next Jan., as he is already planning to reschedule the trip for then!!!