Update & prayer request

Here are our highlights:

  • Faith had another MRI today (with and without contrast), as well as an MRV.  These were ordered for the severe post-infusion headaches she’s having as they want to rule out a blockage in the blood vessels in her brain.  Her headache pain is currently rated at a 6 on a 1-10 scale.
  • Her Immunoglobulin levels have dropped too low again; we’ll be at the hospital all week for another high dose IVIG infusion (# 11), running over 4 days this time, in hopes of decreasing the side effects.
  • She continues to struggle with the P.A.N.D.A.S. symptoms, most challenging the last couple years are the anxiety, emotional lability (strikes out of the blue) and obsessive bad thoughts, although there are many others.  We hope this will dissipate as she heals (it takes up to two years with each exacerbation – this is # 3), as they have in the past.
    • She’s never had a full two years to heal as she has so many strep throat infections, that she winds up back at square one each fall/winter for the last three years every time she gets another one.  Thus, she’s pulling out of this one more slowly than previously; however, we trust in God’s divine healing power.
    • Did I mention that we went Gluten Free in November… a week before Thanksgiving?  Ha!  It’s actually going quite well and we’ve had a lot of fun trying new things!  I absolutely believe this alone has had a very positive impact, not only on the PANDAS, but on the migraines as well.  Most PANDAS children struggle with rage, thrashing (severe tics… looks like a seizure, but if you’re familiar with those, the movements are different), unconscious episodes that can last up to several hours (and they do not remember afterward… a blessing as our kids are so guilt ridden).  While Faith never had tantrums as a child; she has a severe case of PANDAS and experienced these episodes during her first two exacerbations… however, those have been completely absent this past year!!  Praise the Lord for this blessing!!

Also, a young person dear to my heart has just been diagnosed with cancer and has started aggressive treatment for it.

I’ve been feeling the strain myself recently of too many medical challenges (and drama) in recent years, overwhelmed and tired.  I’m sure I’ll be fine with God’s help, but I do need to make some changes to take better care of my own needs on a regular basis.  I don’t tend to excel in that area.

Please keep us all in your prayers; thank you.

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Food Fun!

Food Fun!

Please feel free to share these food pics, as long as you credit and link back to my blog page where you found the food pic.

Thanks & enjoy!

😀

Hollow bell of Trombone cake
with removable large and small mouthpieces at far, right end
Hollow bell of trombone cake
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Trombone cake 2012
Front view of husband's 2012 birthday cake
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Strawberry Cake
Hope & Faith - celebrating birthdays together
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Easter Cross Cake 2011
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Creamy Parmesan Shrimp and Okra
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Orange Cream pastry, sliced open
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Chocolate “Lasagna” Cake
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Wedding Reception cake
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Easter Cross Cake 2010
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Side view of iPod Birthday cake 2010
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Steelhead Trout
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Corned Beef Brisket, Cabbage & Carrots
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Glazed Roasted Duck a l’Orange
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Coconut Macaroons
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Lemon Ginger Shrimp & Scallops over Wilted Spinach

Post-infusion update, migraines and trombone birthday cake

Faith had a challenging weekend and has been feeling lightheaded also.  Her headache has remained severe since Tuesday evening of last week and stayed at that level through most of the weekend.  We were back and forth to the hospital most of the week with that as well as a medical test I had on Friday (results back today – normal).   On Sunday evening, her headache finally came down to about a 4, unless she bends over, then it is higher.  We suspect this is due to a medication she is taking… working on that.  Her blood pressure remains normal. Despite her history of migraines, these are NOT migraines she is having as the post-infusion side effects.  They are not at all sensitive to light or sound as her migraines are and they are in a different location.

She did not sleep well again last night and woke me for help with the insomnia… hopefully, she will wake feeling well today and we will see a reduction in symptoms this week, allowing her to re-start her school work.

I had a migraine on Friday that became severe by Saturday & possibly the worst I’ve ever had by that night.  Unfortunately, this was also the day I discovered my meds were expired.  Ugh… very rough day, but we got through it.

In other news, I was able to complete my husband’s trombone birthday cake for this year and surprise him last night.  He has been working a LOT of long hours in recent weeks/months and I love to do something special to honor him… besides, we were all due for a bit of happy distraction.  🙂

Cooking, baking and cake decorating help with my stress and I enjoy the distraction.  While our girls usually have some idea what they want for a birthday cake and Faith’s ideas are often challenging (which makes it more fun!), he rarely has suggestions as to what he wants and usually just asks for the choice of flavor.  This year, Faith suggested I make him a trombone cake as he is an accomplished player and often plays at our church.  I was thinking, “Great idea, kiddo, but a trombone?!  Made of cake?!!  Yikes!”  Too bad a nice, simple keyboard isn’t his instrument of choice.  😉

As I was mulling over that, next evening, I asked him what he wanted this year and he said he wanted a chocolate pound cake and a trombone with a working slide…. hands down, the most input I have ever gotten from the man, but ha!  Funny guy… working slide!  lol  Ok, ok… a trombone cake it is… the slide does not work, but there are some other neat features.  😉

Front view of husband's 2012 gluten free trombone & case birthday cake

Front view of husband's 2012 gluten free trombone & case birthday cake

It’s made of:

  • Gluten free chocolate pound cake
  • Dark and milk chocolate butter-cream icing
  • Peanut butter marshmallow fondant and a little shimmer dust.
  • The handle might have been chocolate fondant if I had more time, but I just added chocolate to the PB fondant instead.  😉
  • The lid of the case is propped up in the back… this was Faith’s idea, too & she made most of the prop for it!
    • … and yes, it is modeled after his trombone and case.
Hollow bell of trombone cake

Hollow bell of trombone cake

This year’s cake was more challenging since we went gluten free in November and well… hollow trombone bells (that don’t lie flat, nor support the weight of the rest of the trombone while drying, it turns out) need time to dry and harden and my schedule was rather demanding this past week, leaving minimal time for the prep of the decorations.  Still, it was a cool cake to make and I’m glad I did!

Large and small mouthpieces of trombone cake

Large and small mouthpieces of trombone cake

Baby back ribs, potato salad, cole slaw and Faith’s homemade lemonade completed this meal, which we barely completed due to interference of the pesky medical stuff.  I really wanted to add more to the case, but was trying to meet a deadline so we wouldn’t have to bump the birthday dinner to Wednesday evening when he has another commitment, so I left it at that so we would not have to adjust Wednesday’s plans.  🙂

Faith just woke up… she still has a headache this morning, but it is still around 4, like it was late last night.  PTL!!!!  Sounds like we are finally pushing past the post-infusion reaction that started on day 2 of her last high dose IVIG infusion for the PANDAS and immune deficiency last Tuesday!  She still has the nausea and increase in headache when she bends down and seems out of it this morning… so, still a way to go.

Please continue praying for Faith, who pushed through a very rough week with great tenacity.  We will meet with her Neuro-Immunologist soon to discuss how to proceed with the infusions, as well as other testing her medical team is discussing.  Please pray for wisdom for her medical team, also.  Thanks so much for reading our blog and supporting us… the support, emails, posts, and prayers sustain us!

Oh… and don’t forget to eat cake!  😉

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