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

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!  😉

Update of last few months and request for prayer…

Faith was probably about 80-85% in remission at the end of the summer as school began.  This was such a huge improvement over where she was last winter – so very ill and we were very concerned.

She started back to school with a late start and modified schedule.  I noticed a renewed confidence in her that I’d not seen in longer than I could remember – years.  Grades were excellent, she looked much healthier.  While I knew she still had a long way to go (her PANDAS specialist estimates two years for her brain to completely heal), I was starting to feel oh, so relieved!

On October 14, she was diagnosed with another strep infection.  She had 2 weeks of antibiotics and it seems to have cleared.  However, she started having severe migraines that we could not break with medications and wound up hospitalized twice – once in October and again in early November.  They remained severe and she missed a great deal of school and fell behind in classes again.

Autumn 2011 hospitalization for severe migraines

Autumn 2011 hospitalization for severe migraines

We learned of a family member who has Celiac Disease and since removing gluten, has noted dramatic improvement in migraines.  Although she tested – for CD, on the advice of her Neuro-Immunologist, we decided on a 3 month trial of a gluten free diet for her – I’m doing the same as my migraines are also severe and frequent.  Additionally, many PANDAS kids are gluten free as it seems to help with autoimmune diseases.

At about three weeks into the GF diet, the migraines finally calmed – praise the Lord!  She does still get them occasionally, but with the exception of one of them (2-3 days pre-MRI – she was very nervous about the MRI and it calmed afterward), they are responding to first line medication now.  We’ve been doing this for about 2 months and it certainly does seem to be helping.  We’ve had several storms now in which we’ve walked out of the house and been surprised to learn it is raining – this is huge for us as we are so triggered by weather that we are more reliable than the weatherman at predicting rain within 1-2 days.  At least, we were before going GF.

Faith missed almost all social activities during the autumn as her health declined.  She signed up for Junior Cotillion this winter and we hope she’ll be able to attend all 6 events – it would be so good for her to have some fun in her life.  I was able to snap a rare photo of her as she headed to her first one when she looked the healthiest she has in a very long time.

January 14, 2012 - Hollywood Night

Junior Cotillion - Hollywood Night

Lovely, yes?  🙂  Unfortunately, this was a rare moment and she’s exhibited a rather steady decline in recent weeks.  While an episodic course is to be expected with PANDAS, she’s taken a more negative trajectory in the last several weeks and I’d estimate she’s about 65% healed at this point – wrong direction.

We’re working with our Ped and we see her specialist this week… please keep praying for wisdom for all of us and clear treatment solutions that will get her back on track to 100% remission.  Thanks so much for your prayerful support; it means more than we can articulate!

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!!!  🙂 ♥♥♥

Enter your email address to subscribe to this blog and receive notifications (instant, daily, weekly or never) of new posts by email.

Join 70 other followers

Blog Stats

  • 33,428 hits
%d bloggers like this: