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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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!  😉

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

Update

Well… last week was pretty good.  On Tuesday, we went out for a belated Valentine’s Day luncheon.  Faith looked so healthy and seemed so happy that day.  I don’t remember seeing her so… well… herself in a long time.  She ate a good lunch, the waitress commented on what a mature and lovely young lady she is… yes, that’s true … and thank you for noticing in front of her; she needs to hear that these days.  ♥

March 15, 2011... belated Valentine's Day Luncheon

Go ahead… click on the photo for a better look… Doesn’t she look lovely, healthy and self assured here?  🙂  She is actually… much, much more!  What a remarkable young lady my heroine is!

March 15, 2011 - belated Valentine's Day luncheon

I’ve been trying to get her out for more exercise… looking toward getting her back to school and having the stamina to get through what will likely be a modified schedule.  Also, the fresh air and exercise seem to help her.  Sometimes we take our golden retriever with us when we go for a walk or a bike ride.  Other times, it’s just the two of us and we go all over the trails near our home; we’re blessed to live in a historic, lovely area with a lot of wildlife to enjoy!  🙂

Thursday evening… March 17, Faith even went outside and rode her bike with other kids in the neighborhood.  !!!!!  😀  Dan and I were so excited for her to see her do that and have a sort of ‘normal’ evening… it’s been so long, she’s lost so much childhood… so much has happened.  Yes, I do realize what a ‘normal’ activity it is for a child to ride bikes with the neighborhood children… never take the mundane normalcy of life for granted… it’s much more fragile than we realize.  I wanted to shout from the rooftops!!!  My heart sang for her!!!  😀

 

Riding bikes with neighborhood kids – March 2011

That was three weeks after her last HD (high dose) IVIG infusion.  That week was so encouraging!!  I started thinking about her going back to school…. I asked her homebound teacher to bring her work for the core classes we had not yet caught up and had her start working on those… was aiming toward getting her back for a modified schedule, even if it could only be 2-3 days a week in the mornings, for her core classes, realizing she would be tired and need to rest after getting up so much earlier to go to school.  (She continues to sleep until about 11 am – noon; her body needs so much rest to recuperate.)

This week; however, is not as encouraging… it’s more worrisome.  She’s not looked as well, physically.  Last night, she had a severe episode of separation anxiety and seemed “thisclose” to going into one of the full blown rage episodes she was having daily (and sometimes more often) around Christmas when she was hospitalized … which is usually complete with thrashing (think seizure-like, but it’s not a seizure), eyes rolling back and going limp afterward… scary for a parent to observe.  She hasn’t had one since just before this most recent infusion…

Suddenly, she “had” to be with me and hugging me… this translates into a grip in which I sometimes can’t get a breath… sometimes, it is the precursor to a rage episode, thrashing, limp, hallucinations… I did say I would be more candid here.  I realize it’s shocking to think of this lovely Christian honor roll student who is so thoughtful of others suddenly transforming into what I describe. This is what is so alarming about PANDAS/PITAND… the dramatic changes it can bring about in such a wonderful child!  … in ANY child who has a pre-disposition to an auto-immune condition.

Today marks 29 days post her most recent HD IVIG infusion.  The half life is 21-28 days.  I ran a rapid strep test as she’s complaining of strep symptoms and is convinced that she has strep – she is rarely wrong.  The rapid test was negative.  If her symptoms do not improve within a few days, I’ll repeat that myself or take her to our pediatrician.

She is not scheduled to return for her next infusion for four more weeks.  I’m pushing sleep this weekend… pushing rest, healthy diet, fluids, exercise… everything that helps her recover.  If no improvement by the early part of the week, we’re going to have to see our Pediatrician and/or our local Immunologist, who I am working with to determine if we might be able to manage most of her HD IVIG infusions here locally.  Are her IgG levels dropping?  Does she have a new infection?  Did the rapid strep test (they have about a 20% false negative rate with no known false positive rate) miss a strep infection (she remains on twice daily antibiotics; however, she has tested + for strep while on antibiotics and just after several times)?  Has the auto-immune process not been shut down sufficiently?  I don’t know the answers to these questions… I’m praying this is merely a temporary bump and she improves quickly.

Strep is a disconcerting bacteria for my child.

Group A beta hemolytic streptococcus

  1. Strep bacteria are able to disguise themselves to avoid detection by our immune systems
  2. Our immune systems do not initially recognize it as strep; however, the immune system does it’s job and creates a “template” of this new invader, which it knows is not ‘self’.
  3. The immune systems antibodies attack this foreign invader to destroy it.
  4. Sounds like all is working as it should, right?  Yes… except…
  5. We believe that the strep has, in these cases, disguised itself in such a way that it ‘resembles’ the molecules found on cells deep in the basal ganglia of the brain.
    1. This is known as molecular mimicry and is the trigger for the cascade of events in the auto-immune process.
    2. The basal ganglia are a complex group of interconnected components that are part of neurological loops in the brain.  They are involved in processing/regulating information from almost all surrounding cerebral structures, including motor function (and voluntary motor control), learning, memory, emotion, dopamine, sensory input/sensation, motivation (known as “paralysis of will”), inhibition and dis-inhibition (excitatory), vision, judgement, personality, speech.
  6. Thus, the immune system crosses the blood brain barrier (this part is not yet fully understood as the BBB was thought to be impermeable to this) and attacks those areas of the basal ganglia as well, causing inflammation and a myriad of complex signs and symptoms…. many of which are listed on my About PANDAS & PITAND and links page… transforming a previously sweet, intelligent, polite, mature and thoughtful child into one the parents find hard to recognize … personality-wise.

Looking back over the last few weeks, I realize while she has not had a full blown rage, thrashing, limp episode in about four weeks (and we clearly see that as improvement), she continues to have these really intense separation anxiety episodes… last night’s being probably the worst in a long time; although, she had a couple intense ones with me last week as well.

I’m sometimes so eager to have her life back to normal as she has lost so much of her childhood to PANDAS/PITAND, that I forget what I know:  brain injuries take anywhere from several months to years to heal.  It is only then that we have some idea where things stand for long-term prognosis.  When injury is on-going or recurrent, as it is in the case of PANDAS/PITAND, it becomes difficult to know when the injury stops and the healing process begins.

I’ve been sitting here staring at the computer trying to think of a more positive way to complete this post… I’m at a loss.  She is where she is at the moment.  She does have a few good hours some days, but they are in the midst of a challenging recovery.  Today has been difficult as well.  Time… Time will tell….

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