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
.
Orange Cream pastry, sliced open
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Chocolate “Lasagna” Cake
.
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
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Tangled! :D

So… people often ask me how I do this… how do I walk this incredibly difficult journey day by day, researching the best treatments for children with PANDAS/PITAND, caring for a child who remains ill, meeting with usually several doctors a week, etc. Hmm… well, I admit that some days are very rough and I do feel utterly drained, exhausted and even defeated at times.  I am human.  I know though… that God loves us more than we can fathom and WILL continue to carry us through this… even the darkest days.  He is always with us on this journey and will never forsake us.  (“Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6)

Sometimes, God even chooses to provide examples, such as the following story… 😉

When we went to a nearby hospital for a scheduled IVIG treatment several weeks ago, we learned there had been a mix-up in the scheduling and Faith was not to have IVIG that day.  I met with several administrators about the error as well as to seek increased awareness among their staff regarding PANDAS/PITAND.  As part of the meeting, they wanted to apologize for the confusion and offered us tickets for me to take Faith to see a movie.  😀

She wanted to see Tangled, so I checked the schedule, called and invited her friends and off we went!  We arrived and learned that Tangled’s last showing… was the day before.  😦   I had three disappointed girls… we stopped at a RedBox, got another video and went back to the house to watch it and paint fingernails.  The day was saved – whew!  😉

Somehow, this came up recently and I responded that Tangled would be the next movie we will see … once it is out on video and looks like it is coming to RedBox soon so hopefully…

Ahh… the kindness of others… someone (who has their own cross to bear right now, I might add) … took the time to order and send us a Tangled DVD with a note for Faith.  We were both deeply moved by this incredibly loving gesture.  Faith said, “That is so nice; —– doesn’t even know me!!!”  😀  I choked back tears at this gesture of selfless kindness and tried to find an even voice. “Can we watch it tonight?”  She’s with her daddy tonight; but, I know she is looking forward to it this weekend … early next week, she and I have a date to watch the movie we missed and feel the warmth of others walking beside us through this journey.  ♥

In the midst of the darkness of this journey… God is here, active and demonstrating His love through others.

Thank you… for this amazingly gracious & thoughtful gift… it truly is so much more than a DVD!!  ♥♥♥

Tangled DVD

Rough night… severe episode as Swedo’s live discussion ended

Severe episode tonight, following an episodic day of waxing/waning symptoms. Worst of episode lasted about 45 min, followed by thrashing for a couple min, then limp…then hallucinations… I could not get near to comfort her.
We’re all exhausted.
Good news is this is the first bad one since almost a week ago, Thursday.
Our local immunologist is reviewing research literature supporting high dose IVIG for PANDAS.  NIMH is doing another study on it.

Good evening tonight & upcoming labs…

After antibiotic increase starting Friday, Faith came home tonight saying she felt a little better and did not have to work so hard to hold it together at her dad’s this weekend and thus, she said she was not as tired as she usually is when she gets home from visitation. NO episode tonight, Praise God!!! :~)) A short lived phase of OCD and needed some hugs, but nothing major. She seemed happy and calm this evening; went to sleep easier at bedtime too.
Praying she has a good week.
She’ll have another battery of labs run this week… some are the LFT and porphyrins they have been watching since they’ve been elevated at her Christmas admission, most others are for co-infections often seen in kids with PANDAS /PITAND : Mycoplasma (often causes childhood pneumonia… she had @ pre-school age), strep titers, Lyme IGeneX panel and her Immune globulin levels to prep for next IVIG.

I hope you dance…

Faith and I have been involved in a wonderful worship dance ministry for the last several years. Unfortunately, due to her PANDAS medical condition, she has been unable to participate in several months. Classes began last night for spring semester and although I initially had decided not to participate until she improves, some schedule changes made it possible for me to re-consider.

The hip-hop class she most recently attended was meeting immediately after and she wanted to stay for it.

Worship Dance Hip Hop lineup, Spring 2010

Worship Dance Hip Hop in action, Spring 2010

Sigh…what to do?  I admit I was worried, but decided to trust God was in control.

The other dancers were so happy to see her and several of them hugged her, including the instructor. She enjoyed class so much, did well with the choreography and … did not have a major episode that evening!! Praise God!!! I can’t say the evening went perfectly, but nothing like the major episodes we’ve seen so many times. It was so good for her to be back at worship dance. As for future classes, we’ll have to see how she does health-wise, but for today, while she rests, I am so thankful that she was able to attend that one class! :~)) ♥ … and in her future… I hope she will dance with joy at God’s healing touch! ♥

Denise & Faith - Worship Dance Recital, Spring 2009

Worship Dance Hip Hop team, Spring 2010

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