Friday, February 12, 2016

Another Diagnosis - I'm Not Joking

I'm done for the week. Yep, all done. There will be no more mommy-ing for this week (except there will be because it is needed). Honestly though, I'm taking the weekend off. If I had any commitments this weekend, I've forgotten them or kindly rescheduled.  (Minor update: I woke up in the wee hours of the Friday morning with a stomach / intestinal virus... so, I am definitely taking a break.)

It's been one crazy and busy week, even after we gave up our tickets to the homeschool symphony outing (you know how we love the symphony) and Amber did not serve at the youth group pancake dinner Wednesday. We were supposed to have an extra PT appointment to pick up Amber's foot orthotics today, but I'm not fit to be in public and I assume I'm contagious. Fred is dealing with the remainder of Amber's appointments / activities today. 

Wednesday, Amber had her upper endoscopy to check for Eosinophilic Esophagatis, again. Her symptoms match EoE so well, but from the visual check done during the scope it's probable the biopsy will come back negative for an excessive amount of eosinophils on this scope. The biopsies won't be back until next week though, so it's not certain.  

Before and after her upper endoscopy.
If you're one of my personal Facebook friends, you already know what they did find and the results of the ultrasound from last week so you can skip this next part. 

Last week's ultrasound did indeed show something "off" with Amber's gallbladder: a small polyp has grown within her gallbladder. She may or may not be symptomatic of this polyp; it's hard to say with her other GI issues what is causing the symptoms, although it's more than likely the polyp is causing problems. The polyp is not large enough to warrant immediate removal of the gallbladder, thankfully. However, Amber will have regular ultrasounds now to check the growth of the polyp. The overall gist of the conversation with Amber's GI doctor was that she will lose the gallbladder sooner, rather than at my age. I dread surgery for this child. 

The scope this Wednesday looked clean until the stomach. She has 2 "buckets" of bile sitting in her stomach causing damage. The diagnosis (from lack of contractions and the lovely view) is gastroparesis. Medication is pending as it will be based on biopsy reports. The GI doctor talked over it all with me while Amber was sleeping off her anesthesia. Basically, medication will be used to heal the stomach and retrain it to squeeze, but the medication only works for so long and then becomes ineffective. At that point, which could be three months or three years, Amber will need a gastric pacemaker. The doctor was even discussing where she will be sending Amber for this procedure as it's not done in St. Louis for pediatric patients. 

She was creative all week. Co-op art homework with help from her dad on 3D charcoal drawing; free-time drawing, novel writing.
I did ask the GI doctor what might be the cause of Amber's gastroparesis, because I didn't want to make assumptions. The answer, with a chuckle from the fun and quirky doctor, was "Um, hello, EDS." We really love this doctor though. She jokes and has a lovely bedside manner, although most importantly she listens. She's very thorough and careful too because Amber is a rather unique case with a lot going on. 

School-wise, we did well Monday and Tuesday, while not even attempting school after Amber had been under anesthesia on Wednesday. The rest of the week has been pretty lackluster though. The block schedule was a hit again this week, although we were less productive. 

Accomplished:
  • 1 afternoon at Children's hospital in PT
  • 1 day of co-op classes
  • 1 entire lesson of IEW, which was intended to be 4-5 days of smaller lessons
  • 1 entire lesson of Latin morphemes (again structured as a week of single lessons)
  • A grammar block
  • 1 block of Finance Park, and we are almost finished with the curriculum
  • 1 block on elections (using Home School in the Woods- review next week)
  • 1 block of art: co-op class homework
  • Miscellaneous time learning about gastroparesis. 
  • Confirmation homework 
  • Acolyting for Ash Wednesday service (yes, this was in the evening after her morning scope. It wasn't a good decision, but she survived.)
  • Flute lesson and practices
  • 1 last minute science block this afternoon.
Elections work, and lunch after church last Sunday. She loves her Sunday school class.
Next week is crazy again with additional medical appointments, and who knows what after the biopsy is back. I'm glad we only have one more week of co-op classes before our mid semester break, because I can acutely feel the burn-out and have become frustrated with one class in particular. Well, to be truthful it all probably has very little to do with the co-op kids, and more likely is a direct result of my stress and anxiety over Amber. I can't seem to "mommy" and "teacher" multitask at the moment. I can't seem to do anything actually. I'm just a tad overset about a diagnosis that I suspected, which somehow in my mind was not that big of a deal. 

So this weekend I expect to play a lot of video games with my daughter, finish up her confirmation homework, sleep, and eat lots of ice chips. 

Happy Weekend!


Linking With:

Weekly Wrap-Up   photo purpFFBut_zps970d6cbe.png Homegrown Learners






9 comments:

  1. I'm so sorry to hear all this bad news. I have tears in my eyes so I can just imagine how devastating this is for you. Yet you all still manage to carry on and Amber still has her gorgeous smile! Christy, I hope taking he weekend off will help refresh and revitalize you. As always, I'll be praying

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    1. Thanks for your prayers and kind words. I'm trying to not feel overwhelmed and take it all one thing at a time this weekend. Even our cats are sleeping a lot today. :)

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  2. Christy I am so sorry. I just wish we were closer so Keilee could hang out with Amber and I could sit down with coffee or tea and chat. I hope YOU start feeling better and you get all the answers to get Amber on the road to being 100%. Hoping you have a peaceful, calm weekend my friend. <3

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    1. Thanks Karen. I'm feeling much improved today and even ate normal-ish food. Amber is a little queasy now though. We just need time away from other people and to rest for a few days.

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  3. Oh Christy! We are praying. I am so sorry Amber has another hurdle to climb. What a difficult road you all are on. Take it easy and rest. I wish we lived closer to you and could help out in some way.
    Blessings, Dawn

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    1. Thanks Dawn. It was just one of those long weeks and I was physically as well as mentally worn down. I'm already doing a little better, at least until I get tired again. :)

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  4. Sounds like a stressful week all around. Homeschooling is tough enough but trying to juggle mommy worries with teacher worries is doubly no fun. I think of you both often and remark on what a beautiful, strong, young woman you are raising. She's always smiling in these posts and seems to handle all these tests in stride. I hope the weekend rest helps and you find your footing on this detour in the path. Prayers and blessings for you all.

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    1. Thanks for your lovely comments. She tries hard to appear positive on the outside. People often remark about that. It's just her personality. Sometimes this makes things more difficult to really know what's going on in her head, but she isn't the type to whine and complain about her life.

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  5. Oh, gosh, Christy! I didn't read on FB. I've been too caught up on my excitement of the RV...Are you feeling better? Amber...that girl is one trooper! You and Fred too. (I know I've said it before.) These things could really bring all of you down, but you keep going. Look at that girl's smile? Go, Amber! Go, Amber! Enjoy some time off! Sometimes mental and emotional "health" is much more important. (And Amber, go easy on your Mom with the video games. Let her win once in a while. :smile:)

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