Lab results on Good Friday

It’s Friday, but Sunday’s coming.

How often during these last few years it has felt like Friday.  How often we have not had answers about why things are happening the way they are, about what all this means, about where it’s all leading.

Today, we received some preliminary labs, while we continue to wait for others.  We’re starting some research on what we know so far, hoping we’ll soon learn more and considering what other labs might be important for the next time.  We’re hopeful this will bring information to help Faith heal.

Again, we don’t have answers about why, what, where… again, it’s Friday… but, Sunday’s coming.

We rejoice that even though we do not know the answers to many questions right now,  we can be confident and thankful, even joyous in the incredibly good news of Jesus, who paid our debt and rose on Sunday.

 

 

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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

Easter Sunday yesterday & an upcoming week of doctor appointments…

~♥~ † ~♥~ Easter blessings! ~♥~ † ~♥~

We rose yesterday morning to a glorious celebration that Jesus is ALIVE!!!  I love Easter Sunday!  One of my favorite songs, played in my mind most of the day:

♫ He is alive!
He is alive!  ♪
♪ He is alive and I’m forgiven!  ♪
♫ Heaven’s gates are open wide! 
HE IS ALIVE!!!  ♫

We joined Faith in the Student Ministries worship room for morning worship and one part from our Associate Pastor’s message remained in my mind… how Mary (who was looking for Jesus at the tomb; she had come to anoint his body with oils) initially did not recognize Jesus when He asked her “Why are you crying?”  She turned, then assuming he was the gardener, asked if he had moved the body and to please tell her where.

Jesus spoke to her again… this time, He called her by name, “Mary”.

This time, Mary turned TOWARD Jesus and in recognition, cried out, “Teacher!”

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How often do we look without really seeing what God is trying to show us?  How often do we call ourselves by names other than that which our Lord calls us?  Jesus never calls us by the negative names we sometimes call ourselves.  We are clothed in righteousness, forgiven because of Jesus’ sacrifice.  Such an amazing love … words cannot begin to do justice!

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Now there was a Pharisee, a man named Nicodemus who was a member of the Jewish ruling council.  He came to Jesus at night and said, “Rabbi, we know that you are a teacher who has come from God. For no one could perform the signs you are doing if God were not with him.”

Jesus replied, “Very truly I tell you, no one can see the kingdom of God unless they are born again.”

“How can someone be born when they are old?” Nicodemus asked. “Surely they cannot enter a second time into their mother’s womb to be born!”

Jesus answered, “Very truly I tell you, no one can enter the kingdom of God unless they are born of water and the Spirit.  Flesh gives birth to flesh, but the Spirit gives birth to spirit.  You should not be surprised at my saying, ‘You must be born again.’ The wind blows wherever it pleases. You hear its sound, but you cannot tell where it comes from or where it is going. So it is with everyone born of the Spirit.”

“How can this be?” Nicodemus asked.

“You are Israel’s teacher,” said Jesus, “and do you not understand these things?  Very truly I tell you, we speak of what we know, and we testify to what we have seen, but still you people do not accept our testimony.  I have spoken to you of earthly things and you do not believe; how then will you believe if I speak of heavenly things?  No one has ever gone into heaven except the one who came from heaven—the Son of Man.  Just as Moses lifted up the snake in the wilderness, so the Son of Man must be lifted up, that everyone who believes may have eternal life in him.”

 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.  For God did not send his Son into the world to condemn the world, but to save the world through him.

John 3: 1-17

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Once home, our Easter dinner guests arrived; we had appetizers of shrimp & ‘angel’ eggs, followed by dinner of roasted lamb, wild rice pilaf and vegetable medley.  Seeking to create something to express this amazing event we were celebrating, I made a carrot-spice pound cake with cream cheese icing and decorated in my humble visual expression of Easter Sunday.

Easter Cake 2011

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This will be a very busy week for us.  We have several doctor appointments with specialists, two of which are out of town.  Today, we have one about an hour away with a Pediatric Infectious Disease doctor (who our Ped recommended and has an interest in PANDAS kids) about Faith’s labs for co-infections.

Tuesday, we hope to squeeze in a home-bound instruction appointment; Wednesday we will travel a couple of hours away for another appointment on Thursday … this time with a Neurologist who also has a focus working with PANDAS kids.

Friday morning, I (finally… way overdue) have an appointment with a new doc for myself.  I’m overdue for a physical and definitely need to discuss my high fasting lipid panel (it’s not that cake up there… lol… my diet is generally quite good, but genetic issues are sometimes tough to overcome) and develop a plan for getting that under control.  I’ve been exercising more the last several weeks and I am much stronger than a few years ago when my own health was in serious condition.  Friday afternoon, we meet with Faith’s Pediatrician again to evaluate the IV Rocephin, whether she has cleared the strep throat infection with that therapy and whether to continue anything via her PICC line or remove it.

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

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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