Mother’s Day 2012

What a gloriously beautiful day it was today!  Church, Brunch buffet, hanging out at home with my two favorite people… here are a few pics of this year’s Mother’s Day:

 

 

Blessings

Today, I am so deeply thankful for the blessing and gift that honored me with the most cherished and important role of my life: Mommy! ♥  Faith, I love you and treasure you, my precious daughter and I admire your courage and tenacity.  I am so thankful and proud to be your Mom!

Faith's Christening

Faith’s Christening

Happy Mother’s Day to my mom (another blessing in my life!) and all the moms reading this! ♥

It’s certainly been a hectic couple of weeks around here!  What’s new, right?

Last weekend, we celebrated our eldest’s (my stepdaughter) graduation with a Master’s degree in Biology, focus on Biomedical Sciences.  She’ll be completing her Thesis this summer and anticipates defending it by August.  She’s worked very hard these last couple of years and we are so very proud of her!  Great job, Hope & all our Congratulations and Best Wishes!!!  We love you!!

Hope's Master's Graduation

Hope’s Master’s Graduation

Hope's Master's Graduation Reception

Hope’s Master’s Graduation Reception

Meet the adult female Lone Star Tick Faith found on herself the next day:

Female Lone Star Tick

Female Lone Star Tick

Before my fellow PANDAS-PITAND moms (who know all too well that tick-borne diseases are known infectious triggers for PANDAS-PITAND… and very difficult to eradicate, especially if not caught early) suffer heart failure at the sight of that creepy pic… and the knowledge that testing Faith would likely be unreliable due to her immune deficiency and her ongoing IVIG infusions (ask if you want more technical info about the reasons for this; I’m assuming the non-medical folks are not as interested as me, the nurse), I’ll assure you that we continue to work with her medical team on this and she is being treated for tick-borne infections as a precaution.  Still, yes, sigh… another worry… and not one I take lightly as I know far too much about the implications.  Thankfully, she found it very quickly and it was barely starting to imbed.  Thus, the risk is lower.  However, it’s still there and given her complex medical case, we don’t take chances.  We treat.  Please pray any potential infections will be quickly resolved and eliminated.

This past weekend, we celebrated a nephew’s graduation from college with a degree in Business.  He too, has worked very hard and we are so proud of him! Here’s a photo of most of us present at the graduation.

Graduation - Large Group

Graduation – Large Group

Faith has IVIG # 10 this week.  We’ve been so blessed the last several years to be a part of this amazing ministry and dance group.  Dance?  Yes, we dance… but the focus is on mentoring children to become disciples and God is doing amazing things through it!  We bumped the date of the infusion to Tuesday, instead of Monday so she would be able to participate in Worship Dance on Monday evening just before we head down for her infusion.  If you’re local and want to see the recital, give me a call and I’ll fill you in on the details.  Wherever you are, we appreciate your prayers for this infusion and that any side effects will be minimal as she continues to battle severe headaches and vomiting in the days following the infusions this year.

Faith continues to press forward, working very hard to complete her academic load for 7th grade.  Due to being so sick the last two years, she has missed a great deal of content.  Admin has determined that she must pass the state tests in order to pass 7th grade.  She’s amazing in how self-motivated she is in her educational pursuits and she continues to press forward.  We trust she is in God’s hands here and as in the past, will do well on these state tests.  We appreciate prayer support for same… her first test is scheduled for May 23 – English.  She’ll take the Math test the following week (last week of May) and the History test the first week of June.  We’ve likely lost the Spanish 1 class she was taking for high school credit.  We’re looking into homeschooling her next year for her, for health reasons, to ensure she has the content she needs going into high school.

As most of you are well aware, the journey to reclaim Faith’s health has often been arduous.  We work to get her back to health, only to have her come down with yet another strep throat infection and we’re back to square one all over again.  Those of you who know me well, are also well aware that I firmly believe that God will heal her in His time AND that He will use these trials in our lives for good in some way.

During our recent travels, I was fortunate to hear the following song… very beautiful and though provoking and reminding me once again, that God uses ALL things for good.  Most of this song (especially the chorus) tells of the life we’ve led in this journey over the last several years in working to heal Faith.  I hope it blesses you as it did me. Lyrics follow embedded song track.


We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It’s not our home

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Lone Star Tick & End of School year

Female Lone Star Tick

Female Lone Star Tick

Faith found this on her shoulder Sunday evening.  We think she got it while walking the dog and chatting with some neighborhood kids earlier that day.  While it’s a fairly low chance that she contracted any of the tick borne diseases (this one also carries S.T.A.R.I., which stands for Southern Tick-Associated Rash Illness), neither her Pediatrician nor I were comfortable with not treating it.  Tick borne illnesses are known infectious triggers of PANDAS-PITAND illnesses and with her history, it’s not a good risk to take.  We’re treating with a few weeks of antibiotics.

Please keep her in prayer as she is also wrapping up the last few weeks of school after being quite ill this year and missing a great deal of content.  She’ll take our state-mandated tests, starting in two weeks and administration has determined this is what will determine her passing 7th grade.

We’re looking into home-school for next year, in hopes of keeping her healthier, allowing her brain time to heal from the last few years of onslaught from her immune system and improving her time for both academic and social focus.

 

High dose IVIG # 9

High dose IVIG # 9 for Faith’s PANDAS and Immune Deficiency will be this Mon-Weds (April 16-19).  Due to the reactions (severe headaches lasting days & sometimes unresponsive to meds, fever and vomiting) Faith had following the last two infusions, we’re changing to a different medication and running it over three days, instead of the usual two days.

We’re also getting back some of the labs we recently ran (and running more this coming week) and finding some answers there as well.  Although one never wants to have positive results to these labs, it’s good that we are tracking down the problems, so that they can be addressed and hopefully, help in her healing.  The most notable one is we’ve learned that she has diminished ability to clear certain toxins from her body due to alterations in her methylation cycle.  We’re hopeful that we are closing in on this one and anticipate it will be easily corrected…. nice that something is likely to be simple, so we’re thankful for that.

Prayers are appreciated that this one will go better and help her heal… speaking of which, please also pray for good sleep as she’s not been resting very well lately and sleep is crucial to brain healing.

Thanks so much; your prayers and support sustain us as God guides our every step.

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.

 

 

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

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!  😉

Post-IVIG infusion complications – prayers, please

We spent 6 hours at Urgent Care this evening, due to severe headache and nausea following Faith’s high dose IVIG infusions (for P.A.N.D.A.S. and Immune Deficiency) Mon-Tues of this week.

Medications and fluids are not helping the severe headache or nausea, which has been ongoing since Tuesday evening.  Her case is very complex and challenging, with multiple diagnoses.

We are now home and hoping the meds and fluids will work as she sleeps to decrease her symptoms… if not, we’re most likely headed head back to Children’s hospital in the morning.

Please continue praying for the severe headache and nausea to subside without further intervention and for good rest… for all of us as we’ve been in and out of the hospital all week and I am beyond exhausted at this point. ♥

High Dosage IVIG infusion # 8 update

  • Due to reaction last month with Faith’s IVIG ( two day infusion, usually about 5 hours each day, every 28 days), we are having them done in the hospital for the next few, until we can stabilize her on these.  (She had severe headache, vomiting and fever that were ultimately brought under control with IV steroids and it’s suspected this may have decreased the effectiveness of the IVIG on her autoimmune condition).  She will likely need these long term (the plan is at least until she is a young adult) due to her immune deficiencies as her numbers continue to decline, making her more susceptible to infection and exacerbating the auto-immune process in which the antibodies attack her brain because of her condition of PANDAS.
Day one IVIG # 8 infusion

Day one IVIG # 8 infusion

  • Both infusion days were very long and rough this month (Mon & Tues this week).  Faith had systemic itching on day one & they had to pause infusion for 1-2 hours.  Were able to restart and complete after increasing one of the meds – finished around 9:30 pm (thought we’d be done late afternoon).  Gave higher dose of pre-meds next day, which ran better… until her IV infiltrated.  That took 1.5 hours to re-stick… she’s usually very brave and helpful for those, but is exhausted and has just had it at this point.  This one was completed just before 8 pm.
  • Specialist wanted us to remain in the area for two hours post-IVIG before heading home – in case of reaction.  As we were heading toward the interstate, she mentioned headache at 4 that spiked to 7 within 5 min – with a lot of nausea, although she did fight it back this time.  Turned around & back to ER.
  • Fluids & steroids in ER, followed by 4 days of steroids daily at home.  She slept for a little while… did not help.  They discharged her with headache at 8-9 and we got home around 4:30 am.  Sometimes, sleep is the critical piece to help the headache.
  • She slept and headache was 9-10 when she woke around 9:30 am.  While updating doc this am, Faith started having itching “all over”…. no signs of any new redness or rash.
  • Doctor ordered meds to help with the itching and so she will sleep most of the day, as well as continue the steroids and lots of fluids.  Medical team working on next steps…
  • I also have a medical test in the hospital on Thursday and will probably have to take Faith with me… assuming things are stable enough for me to get it done, rather than bringing her back to hospital.  That’s it for now… I am going to try to sleep myself.  Please only call if emergency, but feel free to email us or her.

Prayers sure are appreciated as we know God continues to carry us through these trials!

Sick girl tonight … prayers please

Sick girl… again… still… I’m getting confused.
Apparently, had a reaction to the IVIG (# seven – high dose) 2 weeks ago that seems to have negated the + effects of the infusion.  Ironically, this infusion ran the best of all 6 before it… and it is the first time she has had a reaction like this afterward.  We usually see such great benefits and healing from the IVIG’s.  After day 2 of the infusion, she had a severe headache, vomiting and fever.  We’re working with her doctors to prevent that with the one she will have in 2 weeks and we see her PANDAS Neurologist on Friday… praying hard that this next one helps her as she’s been struggling with her health a great deal recently.
She did get a little bit of schoolwork done today in History, so I’m thankful for that as it can be very challenging to process academics when one’s immune system is attacking their brain.
Tonight, she vomited several times again.  It’s been a challenging day.  She’s so exhausted and really misses her life.  It’s rare she is able to leave the house, see friends or do anything “fun”… it’s a tough situation for a 12 year old who’s been at this for over three years now.  Hard for a mom to watch, too.
Lord, I trust you carry us through everything and I *know* you have a plan in all of this… please heal my child as you direct our steps. ♥

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