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
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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.

PICC line & Tea Room

I was up at 4 am this morning to prepare to leave for a 6:30 am appointment at our Children’s Hospital… had to allow for traffic & travel time.  I woke her just in time to leave the house.

Arrived, checked in and got breakfast, then up to the floor where we waited for assessment, pre-paperwork, etc.  The RN doing the procedure placed a numbing cream on her upper arm… both sides, although we both liked the look of the left side better.

Waiting for pre-assessment

Video game distraction while waiting for her nurse

Soon after, she took the medication for the procedure and we went down for placement of the PICC line.  She looks so ill in these photos… pale, reddened circled eyes, poor babe… but that’s what we’re here to correct!

Placement was completed without complication (left arm, as we anticipated) and x-ray confirmed correct location.  It flushed fine three times and was ready for use.  As usual, Faith was a model patient… so calm that they only gave her the anxiety dosage of the medication that is usually given in sedative dosage for this procedure.  She was very interested in the procedure itself and watched the entire process…. hmm… any idea where she gets that???  😉

After PICC line placement – watching TV

After PICC placement – Cocoa has a PICC too! ♥

Another RN ran the antibiotic and she was ready to go…. sometime after noon.

We had lunch at a nearby Tea Room, which was nice… aside from a few minutes when we first arrived and were waiting to be seated… I’ll share for the comic relief value, so try not to throw anything at your computer screen while reading and simply skip the next three paragraphs if you’re only here for the medical updates.

A woman who apparently worked there (she took our reservation over the phone), came out to greet us and within less than a minute of meeting us for the first time (Faith, mentioned we just left the hospital after having her PICC line inserted because of recurrent strep throat infections), went into a hard sell mode that she really believed this and that were the answer to what was causing Faith’s condition and getting her well.  Sigh… some people don’t take cues that another is utterly exhausted from the journey of caring for or being a chronically ill child with a serious health condition, is only here to have a break for an hour and enjoy a mother-daughter lunch as a treat in this difficult journey… and not interested the “instant cure” of a stranger who knows nothing about the situation.

Nevertheless, she had “cures” for Faith, for cancer (“Cure any cancer at home for 5-15/day”)… the list seemed to be endless.  Among the most ironic comments she made were that in this book I would read (that she wanted me to purchase) how I should cut back my child’s sugar intake – lol… right… my child who is on a diet of very limited carbs and sugar.  Okaaaayyyy… ironically, this part of the conversation took place over a table of sample pound cakes – several with artificial sugar substitutes.  Next, she informed me that I could “Google” to do some research…. WAIT!!!  Hold everything!!  You’re telling me that I can actually look up information on my computer?!  ???  No way!!  That never even crossed my mind in the two plus years we’ve been dealing with severe exacerbations of this.  I didn’t even bother to tell her that as a nurse (Faith had already mentioned I was an RN in an unsuccessful attempt to turn off the verbal barrage), I do my research on PubMed.  Her next attempt at what I like to refer to as used car sales was to try to get me to purchase some of their products by shoving a flier in my hand and telling me how I could use their sauces to make a wonderful meatloaf… yeah, I put it back in front of her.  I think I can handle meatloaf, thanks.  She gave me her “personal card” and mentioned there was some information there I should look into as well… now, you might be surprised to learn this; but, it turns out that her “personal card” informed me that she is in business with ViSalus, which is a multi-level marketing company.  Ahhh yes… it’s all coming into focus now… even for a woman operating on very little sleep.

Now, those of you who don’t know me well might not realize the effect that a pushy salesperson has on me.  If I was considering purchasing before, you can rest assured I won’t be now.  🙂  I told Faith I was about to walk out, but she pleaded to stay and given what she’s endured in the last few days, I didn’t have the heart to take that away from her too.  I was appalled that not only would someone be using this Tea Room as a place to recruit unsuspecting patrons; but, she also chose to prey on exhausted parents weary from fighting to save their children.  Ugh… horrifying.  Anyway… either she finally got the message after we walked away yet again or we managed to dodge her after that.  I did keep her card… wanted to be sure I get her name right when I report her.  On to the Tea Room luncheon… 😀

Sometimes, when Faith wants something and I tell her “No”, she does what you see in the photo below… sticks out her lip, circles an angel halo over her head and gives me her best big brown eyes look.  hehehehe  It’s totally adorable and has become a family joke over the years.  It never gets her what she wants, but she knows I love to see her do it (when she can pull if off without dissolving into giggles) – always gives me a chuckle!  Today, I caught it on camera – I LOVE this face!!!  😀

Pouty Angel Face – love this!! ♥

Fortunately, the afternoon tea itself revived us a bit.  We love going to Tea Rooms… it’s a favorite Mother/Daughter outing for us!  We had a lovely lunch of tea sandwiches, pomegranate tea, fruit, vegetables and pound cakes.  The Pomegranate Tea was absolutely fabulous and the almond pound cake was very good as well. Personally, I would have preferred more vegetables and sandwiches and less cake, but oh well… we left satisfied.  😉

Tea Room Luncheon

Arrived home … eventually… plenty of traffic… several calls back and forth and we were established with home health to receive medication and let a nurse come to the house for the 24 hour site check, dressing change and the first infusion.  Praying that the OCD does not cause her to pick or pull at the PICC line or dressing/bandage.

Meds are here, schedule is set for tomorrow… and I am one tired Momma!!!  Time for some precious sleep!!!  😀

Zzzzzzzzzzz

Facebook Awareness Ribbon page opened – please “like” us!

I have now made public my Facebook page for information about the Awareness Ribbon.  Please click the button below and “like” the newly public page to stay informed about the ribbon and how it is being utilized to raise awareness & funds for research!  Thanks!!

PANDAS PITAND Awareness Ribbon Silly Bandz have been ordered!

The copyright for the PANDAS/PITAND awareness ribbon is underway!  More info about the ribbon and it’s other uses will be on the way soon… for now – we have news about the Silly Bandz!!

I have confirmed the order for the Silly Bandz in the shape of an Awareness ribbon.  This was Faith’s idea to have silly bandz made based on the ribbon I designed.  Proceeds from the sales of these will go to support the research that Dr. Madeline Cunningham is doing related to PANDAS/PITAND.  Many of you may be familiar with her Cam Kinase testing and her research in the area of Molecular Mimicry and Auto-Immunology.  I am establishing a second web location for information about these silly bandz and other awareness items to simplify ordering and processing for fund-raising efforts.

PANDAS/PITAND Silly Bandz bracelets

These are the high quality original Silly Bandz as they are working with us on production of these!

We are very excited about these Silly Bandz bracelets (and other items on the way soon) being utilized to raise awareness and be a non-threatening way for kids (and adults) to share information and support their friends/family (or friends/family of Parents who have children with PANDAS/PITAND) with this condition; as well as raise funds for research.

If you are interested in purchasing these, utilizing them for fundraising for research (such as walk-a-thons, school, etc.) please “CONTACT US” as we will be happy to partner with you or your organization.

Holding hands…

From the devotional, Jesus Calling:

“The journey is arduous at times, and you are weak. Someday you will dance light-footed on the high peaks; but for now, your walk is often plodding and heavy. All I require of you is to take the next step, clinging to My hand for strength and direction. Though the path is difficult and the scenery dull at the moment, there are sparkling surprises just around the bend. Stay on the path I have selected for you. It is truly the path of life.”

Psalm 37:23-24: “A man’s steps are established by the LORD, and He takes pleasure in his way. Though he falls, he will not be overwhelmed, because the LORD holds his hand”

Thank you Lord, for holding our hands! ♥

Even so… she remains a leader ~ thank you, Lord!

Even in the darkness of this journey… she just got a 104 on an English test and holds straight A’s ~ wow, just WOW… brings tears to my eyes!  ♥  I’m so proud of you, Faith!!!  I know how hard you have worked, even in the midst of illness, to complete your assignments.

Thank you, Lord… for restoring enough of her for this!  🙂  Praying she continues to heal/recover… ♥

Home from out of state doctor trip – update

We arrived home safely very late last night.  She looked really good during the infusion itself; but, clearly sinking on the way home…. nothing as bad as on the way home from the Christmas hospital admission – not even close.  But, could see her color was fading and the circles under her eyes were prominently dark.  “Flipping back the pages” is a known situation following IVIG infusions for PANDAS kids.  I did see a bit of an increase in her OCD symptoms last night.  She was determined that the locks for the tray tables on the airplane must be straight – vertical if closed and horizontal if open.  If I turned them crooked, she “had” to correct them.  I asked why and she said, “they HAVE to be straight”.  When asked about all the others on the plane (don’t worry – we were about to land 😉 ), she said she couldn’t see those.  Whew!  She was playful and smiling about it this time, but unable to leave them crooked.

She went to sleep as soon as we arrived home, without changing… good thing she was wearing comfy, soft leggings and a t-shirt.  I was not far behind her.  I had a very rough night at the hotel with very little sleep and was exhausted… hopefully, we will both be able to rest a lot today and this weekend.

Did I mention Whole Foods?  There is one near her doctor’s office – I really wish we had one near us, but we don’t, so I brought an extra bag (and bought another while there) so I could stock up on healthy, gluten free foods for her.  I bought Bob’s Red Mill gluten free flour as well… I might be able to get that locally; going to check – that would be best as I am happy to make my own things from scratch anyway.  At our first visit with her doctor last month, he indicated that we should be avoiding processed foods; fast foods, etc. and opting instead for the freshest choices, made at home, so that is what her dad and I are working toward providing for her to help heal her immune system.  Because there is so much improvement noted for PANDAS kids with dietary changes including gluten-free and casein-free and because Faith did have some food intolerance‘s as an infant and has been so very ill with this condition, and has CVID, I am also working to eliminate those for her, in addition to strictly limiting sugars/carbs due to her Reactive Hypoglycemia.  The dietary issues are certainly challenging, but as they help her immune system to heal and her health to improve, the benefits are clear.

This morning is typical of the day after her high dose IVIG infusions, she tells me that she:

  • feels more like herself
  • sore throat is gone – she has one constantly from strep infections, but the infusions are helping enormously!
  • headache is better – rating at 2-3 now – it’s usually a 4-5 on pain scale of 1-10 (10 being worst pain ever experienced)
  • nausea is non-existent this morning; that may change as day proceeds; often worse at night, but she feels well today.  🙂

That makes for a relieved and deeply thankful Mommy!!!  😀  Her doctor wants her back in eight weeks for the next infusion.

I am still exhausted and have to run to the pharmacy to pick up some scripts for her… hopefully, we’ll be able to rest more; these trips are so exhausting (probably more for Mommy than patient, but that’s ok ♥), but the result of improved health for her is completely worth the sacrifice!

We met a couple of other PANDAS families from various forums while there, as well as others having infusions at the same time.  It is always helpful to Faith to meet other children struggling with PANDAS as she often feels so alone in fighting this disease.  Meeting others helps her to connect and helps restore her self-esteem.

I’m so thankful that we FINALLY have a doctor who specializes in PANDAS, who is able to help her, after all these years!!!  I am also thankful for safe travel and all the love, concern and prayers of family and friends!!  God is soooooo good!!!  🙂 ♥♥♥

PANDAS 2010 – The Year of Hope…

Rough day today… just needed to post this, more to re-claim my own hope, than anything else:

Hopeful Parents

Someone shared this link with a group of PANDAS parents.  It resonated for most of us.  While it was written about ASD (Autism Spectrum Disorder), one can easily substitute PANDAS for every instance of ASD.

If you are the parents of a child with PANDAS or any other special needs condition, and are experiencing several symptoms on the list mentioned, know this.

  • You are NOT a bad parent.
  • This is NOT your fault; your child has a medical autoimmune condition.
  • You are NOT alone.
  • You are NOT weak.  (As the post mentions, you are a reasonable person, who has been dealing with an unreasonable situation, for an unreasonable amount of time, without reasonable support.)
  • There IS hope!  Contact your physician and/or counselor.  Make an appointment.  Bring the list of PTSD symptoms with you, marking the ones that are applicable to you.
    • I know all too well that you are reluctant to do so, given the history of being ignored, judged, dismissed, etc. with your child’s condition.
    • Go and discuss it anyway.  You need to be as healthy as possible to get through this journey.

Hopeful Parents – ASD & PTSD

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