10th IVIG infusion … 3rd & final day

It’s been a long week … construction right outside our window here, cut her rate in half… helped a lot with headache, but took hours longer to run. I anticipate it will take even longer today.
Headache started spiking as she went to bed … hate to wake her. I’m feeling drained & weary from all the traveling … need rest. Hubby also working very long hours. We’re all exhausted. We’ll be home tonight & praying it’s a quiet weekend for all of us.
Faith is in a strong push to complete half a year of missed content (due to illnesses) and take state tests, starting next week; I’m overseeing that and helping her through it. Please pray she is well enough to do this.
Please pray for us… for stamina, good spirits, good rest and peace… and for all these issues to resolve smoothly.
UPDATE:  Infusion is running, headache at 7-8 (I had her nurse give an anti-inflammatory, hoping that will help as nothing else is helping), we will only go up to half of max rate today, which we hope will help with the several days of post-infusion side effects (severe headaches & vomiting) she has been having.  Here’s a pic of today – PANDAS girls can change the world!!!  All PANDAS-PITAND boys & girls can… and I believe, will change the world!!!  These children are amazing & have enormous  intelligence, tenacity and courage!!

IVIG # 10 - PANDAS girls can change the world!

IVIG # 10 – PANDAS girls can change the world!

High Dose IVIG Infusion # 10

High dose IVIG Infusion # 10 starts today (Tuesday, May 15) & will hopefully, be done by Thursday evening.  She’s in good spirits, after being able to participate in her worship dance recital last night.

We’ve been making dietary adjustments.  We removed gluten in mid-November 2011 and her migraines (that were severe, not responding to medication & were the catalyst for two back to back hospitalizations at the time) improved three weeks later… to the day.  She does still get them sometimes, but they respond to medication now.  Also, since going gluten free, we’ve lost count of how many times we’ve walked out the door and found that it’s raining.  This is of huge significance for both of us as our migraines have always been so strongly triggered by weather that I stopped checking weather years ago, since my migraines were a more reliable predictor that rain was on the way.

Because she had a dairy intolerance as an infant, I also removed dairy from her diet a few weeks ago as a trial to see if it helps – like gluten, removing dairy does help a lot of kids with neuro-immuno issues.  I also started her on daily green smoothies… and… the Blendtec Total blender (with the new Wildside jar) my husband ordered for me just arrived!!!  This is a pic of one similar to ours… and yes, we’re blending most, if not all (& more!) of the items you see in the pic in our green smoothies:

Photo from: http://www.terawarner.com/blog/2011/03/meet-our-st-pattys-green-smoothie-challenge-blendtec-winner-jean-guerini/

I was only able to use it one time before we headed to the hospital last night for her infusion today.  The blend was amazingly smooth!!  It was neat to see how much smoother than our regular blender was. What a delicious way to eat our greens & other nutrition!  The last couple of weeks, I’m seeing her slowly start to improve… she still has a way to go, but we’re thankful for all improvements, no matter how small.  🙂

I’ll try to check in later… prayers are very appreciated that this infusion will go well as she has consistently been having severe headaches (sometimes with vomiting and fever) that last for nearly a week following these infusions.

Thank you for following her story and praying for her and our family… you’re each a blessing to our family!

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

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.

♪ ♫ Music page ♫ ♪ updated ♫ ☺

The Music page has been updated and includes a variety of songs.  Please turn on your speakers and click here to visit it. :~)

High Dose IVIG more often

As most of you are probably aware at this point, Faith improves a little more after every IVIG infusion; however, at just past three weeks from the last infusion, she starts to decline again.  Clearly, while it helps her, she is not yet stable.  Also, she continues to test positive for strep throat (as recently as Wednesday of this week), even on antibiotics and with the high dose IVIG infusions… she has not really cleared a strep infection in over a year.

I’ve been pursuing more research literature on Pubmed/Medline as well as meeting with doctors to seek help and determine what treatment plan they think would be best for her.

Our specialist (Immuno) wants to have Faith do IVIG every four weeks until she stabilizes.  At that point, he will re-evaluate and determine what she needs next.

So, this is a HUGE praise that she will finally be on a better track and we are hopeful that in time the treatment will help her.  Please keep in mind though, that this must be scheduled for the next infusion (she is already over 5 weeks since her last one at this point), so we are not looking at her being able to have this immediately.  Additionally, while repeat IVIG does WORK and help children with PANDAS, we’re talking about a child who has been sick for quite a while…. years… probably about 6 years and this is her second severe exacerbation.  We can’t anticipate healing to be immediate… it will take time – likely months… but we ARE hopeful that it WILL happen for her… at least much better than she is now… how much recovery, we do not yet know.  We continue to pray and trust that she… and we… are in God’s hands.

Thank you for your continued prayers for my sweet, precious daughter… God is listening and He is with us.  ♥

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