Monday, July 18, 2011

perfecting grace...

you know by now that i have two daughters......both with chronic issues. the oldest of the two, my beautiful ashlyn, is 9, and my sweet baby, spidergirl (emma), is 6.

a brief background for those who haven't been around here:
ashlyn has: sensory integration dysfunction, pediatric migraine (anxiety/sensory related), enlarged adenoids, and Morphea

emma has: 4 previous surgeries (ear tubes, adenoids, tonsils & adenoid revision, second set of tubes), severe environmental allergies causing allergic reactive asthma, weekly immunotherapy injections for said allergies, and severe acid reflux.

so, now that brings me to why i haven't been around this little space i have here on the net except to share scrapbooking projects. it's because we've literally been at the doctor every weekday for the last two weeks except for one day---my head is still spinning from it all.

silly as it sounds, i regain clarity of thought one keystroke at a time by turning to writing as a means to decompress. so, here we go.....

we've been seeing specialists right at Children's hospital for a better look into why some issues are unresolved even after long-term treatments and to gather a second opinion on others because not everyone we were seeing before were docs who were specifically pediatric doctors.

i had a nagging feeling that we needed a second opinion for ashlyn's Morphea and an unrelated surgery to remove her adenoids that the Ear, Nose, Throat doctor was recommending. surgery just because they are large? i wasn't buying it.

two fridays ago was one such visit for a second opinion--we saw rheumatology for ashlyn. we saw rheumatology for a few reason....one being that she's been complaining about knee/leg stiffness after sitting, and two she's been on oral chemo for 15 months now with no improvements really.

i walked in with the confidence that they'd just confirm the diagnosis, confirm that we were doing the right thing, and we'd be on our way with some peace of mind.

instead, we left there--3 1/2 hours later--with the knowledge that over half of the area we've always been told (by her dermatologist) was Morphea is actually looking/acting more like Linear Scleroderma because it's more than skin deep and affecting her ligaments/muscle.

she has both diseases in the same area.

linear scleroderma is not what i wanted to hear. so now what?

they will also follow the depth that the disease has affected via ultrasound in the coming year as well as take measurements to make sure it isn't shortening the length of her affected leg.

they suggest that she isn't being treated aggressively enough with oral Methotrexate and want her to do a 2-3 hour infusion Methotrexate (chemotherapy) once a week for 8 weeks at the hospital, then go to injectable Methotrexate. :(

but remember....she also needs to have her adenoids removed so we can't start infusions until after surgery/recovery sometime in August. which puts treatment into the school season and the beginning of sick season.......and at this point my mind is reeling with all the 'what ifs'.

i'd be lying to say that i'm not freaking out about hooking my child up to chemo infusions.

i left that appointment feeling numb. that's a lot of information to digest after a weeks worth of other appointments....and after going in with the confidence that i did.

and hello? this wasn't a private conversation behind closed doors....this was all discussed right in front of her. she fell apart.

the monday after we had the second opinion about the adenoids and the response was a resounding 'yes it needs done' and a turbinate reduction. she fell apart all over again.

the week prior to all this we were at the Children's hospital (we pretty much live there lately) to see a GI specialist for emma for persistent severe reflux (diagnosed by barium swallow) even after being on an adult dose of medications. they are suspecting esinophilic esophagitis which will be confirmed by endoscopy and biopsies of her esophagus, stomach and small intestine under general anethesia--as soon as i schedule it.

we were at the ENT this past wednesday for emma too, because she's had a hoarse voice for 2 months solid again--most times she has no voice at all by the end of the day. the doctor attempted to place a camera up her nose to view her vocal cords to see how much inflammation and erosion there is from the reflux but she was too upset.

so this coming friday we get to see a voice/swallow specialist at the Ohio State University Medical Hospital.

and if that wasn't/isn't enough, we landed ourselves with with a 3 hour visit to cardiology last friday--you guessed it, at children's hospital--because she's had a murmur since birth and has had a handful of pounding/racing heartbeats. the pediatrician thought it needed checked. even though her heart audibly sounded fine to the doctor, her EKG is abnormal showing some issues with the right side of her heart. thankfully an echocardiogram of her heart that day didn't match up with the EKG. :)

we left there with a recording device to capture her heart rhythm any time it happens over the next 30 days. we can handle that.

and in the middle of all that chaos, i had a followup bloodwork after starting methotrexate myself for rheumatoid arthritis. at the visit i was bumped up to a higher dose, got more bloodwork, then the next day got a call saying don't bump up because my liver enzymes are elevated.

*sigh*

i'd like to think that i'm learning more and more with each appointment to let go and trust God with the outcome of these situations. the awesome thing about medical care is that we have the ability to say NO--but also at the complete risk of being detrimental to their health.

we're making hard decisions over here as God perfects His image of grace through us.

and i can now say with confidence, that He had a definite purpose for me being enrolled in a Nursing program years ago. without a doubt it's so i could be educated enough in the medical field to be a strong advocate for my children as we deal with these special medical needs.

unexpected detours. i'm convinced they are always blessings in disguise.

and now.......my brain can officially move onto documenting the more fun things we've been up to in july. as soon as i edit the photos. it feels good to be back into the routine of blogging.

i've missed it.

12 comments:

  1. Oh, I don't know what to say. I am sorry and will put you all on my prayer list at church again. I honestly don't see how you do it all. And keep it together. Which sounds dumb, I know ... what else are you going to do?
    I do wish we lived close to each other ... can you feel any cyber hugs? LOL.

    ReplyDelete
  2. i can. :) thank you.

    and...pssssssst....i *don't* do it all. my husband does, LOL. really. he cooks, and gives baths, and helps with their evening medicine.

    and the rest? it goes undone.

    you should see my flower beds, and my kitchen cabinets that have no doors (for over a year now), and the baskets of unfolded laundry, and the sink full of dishes....and,....and,....

    perfecting grace...it's a continual thing. :)

    thank your church for their prayers. xoxo, tania

    ReplyDelete
  3. Goodness..I myself had to take a good handful of really deep breaths and exhales reading about you guys. I'm so sorry that you and your sweet girls must deal with these things. I can relate on a bunch of levels. I myself do not have children but have been like a mom to my brothers. My brother Jason had been going through some really scary medical issues a few yrs ago. Lots and lots of Dr.s with no answers. Cancer treatment centers...all to end with a big question mark. And going through Aaron's near fatal van crash and the surgeries, and therapy....ahh we are still dealing with so much of that. I myself have pretty terrible panic disorder, and anxiety issues. Ahhh long story.

    Just wanted to tell you that I think you are incredibly strong and an awesome mom! Super happy to be connected! :) Hooray for the internet! For a bajillion reasons...but truly...online friends are an amazing thing! :)

    Thinking of you guys!!
    XOXO

    Jenny Holiday

    ps... I'd love for you to email me with your mailing info. :)

    Jennyeveryday@aol.com

    ReplyDelete
  4. So...my frustration... My very spiritual, religious or just plain smart friends tell me all the time..."God doesn't give us more than we can handle," but I listen to your stories and it feels like so much more than one young woman can handle. How do you do it? How do you keep it together, continue to work, raise such beautiful children, not lose your mind, not run away??? How do you continue?? You are a true inspiration, Tania!
    xoxo
    Shel

    ReplyDelete
  5. I don't know what to say that hasn't been said already. YOU can do this Tania. You WILL do this. ONE day at a time. One obstacle/medical condition at a time. Try not to think too far ahead, that is overwhelming. Get through today. Tomorrow you can worry about tomorrow. As for school with Ashlyn- same thing. Kids are pretty darn amazing. YOU are strong. Loving. Fierce. You can do this- because you are not alone. Always know what.
    I know that my situation is a lot different than yours, but having an ill child is scary. I, too, was looking too far ahead and it seemed as if it were too much to cope with. I have learned to take it day by day, which isn't easy, but it's manageable. I know my Ashlyn is going to miss a lot of school this year. I cannot control that, nor can it be prevented. I am just going to roll with each day and do the best I can.
    That is all God expects from you- just do the best you can. {{{hugs}}}

    ReplyDelete
  6. I'm also not sure what to say exactly, my thoughts echo all the comments above. This is all such a load to bear but I'm sure you will come through gathering strength from each other. Will keep you in my thoughts & prayers xx

    ReplyDelete
  7. I am glad it helps you to cope by writing out these trials you face in your life. I am so proud of you that you continue to remain strong in faith knowing God will not abandon you. You and your girls continue to be in my prayers.

    ReplyDelete
  8. I love you and your girls to pieces and you know I'm here if and when you need. Hugs, sweet friend, and lifting you all in prayers.

    ReplyDelete
  9. You never cease to amaze me Tania. The strength you & your family has is awesome. It's crazy how much strength you can get from online friends when you need it, huh? ;) Like everyone has said, one day at a time, one hour at a time, one moment at a time...you'll make it through. Positive thoughts & healing energy from me to your whole household. *HUG*

    ReplyDelete
  10. So much, all at once. Holding you in my thoughts and prayers and being inspired by your positiveness.

    ReplyDelete
  11. I'm sending a great big hug to all of you!
    God bless you and hopin that today is a Great Day!

    ReplyDelete
  12. oh my goodness. i should have read your blog before i wrote! :-) I have lupus and olfactory migraines to name a few.. i can relate but so sorry to hear you have all of this going on with small children!!! i'll say some prayers for you for sure and for your beautiful girls!

    ReplyDelete

thank you for taking time to leave me a comment! i will do my best to leave comments answering any questions you may ask :)

LinkWithin

Related Posts with Thumbnails