Update & prayer request

Here are our highlights:

  • Faith had another MRI today (with and without contrast), as well as an MRV.  These were ordered for the severe post-infusion headaches she’s having as they want to rule out a blockage in the blood vessels in her brain.  Her headache pain is currently rated at a 6 on a 1-10 scale.
  • Her Immunoglobulin levels have dropped too low again; we’ll be at the hospital all week for another high dose IVIG infusion (# 11), running over 4 days this time, in hopes of decreasing the side effects.
  • She continues to struggle with the P.A.N.D.A.S. symptoms, most challenging the last couple years are the anxiety, emotional lability (strikes out of the blue) and obsessive bad thoughts, although there are many others.  We hope this will dissipate as she heals (it takes up to two years with each exacerbation – this is # 3), as they have in the past.
    • She’s never had a full two years to heal as she has so many strep throat infections, that she winds up back at square one each fall/winter for the last three years every time she gets another one.  Thus, she’s pulling out of this one more slowly than previously; however, we trust in God’s divine healing power.
    • Did I mention that we went Gluten Free in November… a week before Thanksgiving?  Ha!  It’s actually going quite well and we’ve had a lot of fun trying new things!  I absolutely believe this alone has had a very positive impact, not only on the PANDAS, but on the migraines as well.  Most PANDAS children struggle with rage, thrashing (severe tics… looks like a seizure, but if you’re familiar with those, the movements are different), unconscious episodes that can last up to several hours (and they do not remember afterward… a blessing as our kids are so guilt ridden).  While Faith never had tantrums as a child; she has a severe case of PANDAS and experienced these episodes during her first two exacerbations… however, those have been completely absent this past year!!  Praise the Lord for this blessing!!

Also, a young person dear to my heart has just been diagnosed with cancer and has started aggressive treatment for it.

I’ve been feeling the strain myself recently of too many medical challenges (and drama) in recent years, overwhelmed and tired.  I’m sure I’ll be fine with God’s help, but I do need to make some changes to take better care of my own needs on a regular basis.  I don’t tend to excel in that area.

Please keep us all in your prayers; thank you.

ER again…

ER… I suspect Faith has phlebitis or thrombophlebitis at IV site from IVIG infusion this week. I called our Peds after hours line & was told to bring her in to be evaluated. We just got home from Children’s Hospital around 1 am due to the side effects post-infusion. All three infusion days were about 14 hours … each. She remains in severe pain (rated at 9 on 1-10 scale) from the post-infusion headache.
#canmommysecureabedandsleep

Hubby has been working extended hours for work project; thankfully, the pressure on that seems to be easing now.

Prayers requested that this won’t be serious and for plenty of restorative sleep for all of us this weekend. We walk on faith that God holds us in His hands & take things moment by moment.

UPDATE: It is phlebitis, but thankfully, there is no blood clot. Rash on torso non-issue. Simple tx should resolve phlebitis at IV site within a few days. We’ll follow up with Ped to re-check in a few days.  When Faith left the room for a few minutes, her nurse said she wanted to tell me that she noticed how elegant she is and how poised she carries herself… even with headache pain at a 9 on a 1-10 scale, she was still engaged with the ER staff and smiling… what a positive sign God gave me that healing is underway and her true personality is shining through.
#soblessed!

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!

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

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

~ Thankful at Thanksgiving ~

I realize I’ve been remiss posting here in the last few months.  It’s certainly not for lack of things happening!  We’ve been very busy with many crises the last several months and I would like to share some perspective on where we’ve been, where we are and where we are going.  If you’d like to enjoy some related music while reading this post, please click play to hear the song in the video below:

Since we married six years ago,

New family at wedding reception, summer 2005

New family at wedding reception, summer 2005

  • my husband’s younger brother passed away unexpectedly.
  • my husband was laid off from his job.
  • I had several bouts of illness & hypo-tension and had to withdraw from my Master’s program.
  • Over Christmas break in 2008, my then 9 year old daughter, Faith, told me she had a headache, sore throat and nausea. She had recently been treated for a strep throat infection. By the next day, my loving daughter changed dramatically into a child I did not recognize, literally overnight. The most obvious changes seemed behavioral (separation anxiety so severe that my child who had always loved school now refused to attend in extreme ways and closely followed me literally everywhere, contamination fears, extreme meltdowns & personality changes); but there were other changes, such as uncontrollable jerking of her head and limbs, sleep difficulties, throat clearing & blinking tics, academic decline, handwriting changes, hallucinations and at times, she was unable to speak.

We prayed over her, the elders of our church prayed over her, I asked for a brain scan, I stayed up countless nights researching, desperate to help her.

We are fortunate that our Pediatrician told us what he suspected only about a month into this trial: PANDAS: Pediatric Auto-immune Neuro-psychiatric Disorder Associated with Streptococcal Infections. It’s a condition in which, for some children, following a strep throat or other infection, their immune system has a cascade of events that lead to an auto-immune process in which the antibodies attack their brain, causing inflammation and a wide array of dramatic symptoms.

It was a 9 month fight to eradicate that strep infection that involved surgery. At God’s nudging, I founded an organization to raise awareness & support research. Faith’s brain started to heal… until she caught strep again a few months later.

During her most recent severe exacerbation, her symptoms intensified further as she fought strep for 15 months. Episodes were more extreme and lasted much longer. Afterward, she usually had no memory of the episodes…

I hope she never does.

Since last Thanksgiving, this is a condensed version of what’s happened (I’m sure I’m forgetting plenty of things, but these cover most of the highlights):

  • medical crises, especially for Faith,
  • continuing to blend our step-family, with the challenges that brings for each of us,
  • unexpected deaths of several extended family/friends from May – August,
  • water damage in our home… three times… in one summer,

    Drying out from part of water damage

  • I’ve lost count of the contractors in our home and it’s not done yet,

    A demolition area

    One of the demolition areas

  • an attempted vacation wound up with hundreds of chigger bites covering me, my husband and Faith, one earthquake and a hurricane… so much for down time.
  • car accident that totaled our car,

    Totaled car

  • fought for Faith’s health against some doctors who didn’t ‘believe in’ my daughter’s disease,
  • 15 months of fighting a strep infection that causes an auto-immune cascade in which antibodies attack her brain,
  • Three inpatient hospitalizations for Faith for severe PANDAS exacerbation Christmas week last year & most recently for severe migraines in October & November, unresponsive to medications, as well as countless doctor and hospital visits in which she was not admitted,

    Christmas Eve night 2010 hospitalization, receiving first high dosage IVIG infusion

    PICC line

    Severe Migraine hospitalization

    Severe Migraine hospitalization

  • several trips to out of state medical specialists,

    Vigi, Faith's IVIG bear

    Vigi, Faith’s IVIG bear

  • most of last year on home-bound education where Faith was isolated from her life (and I was also, for the most part) as she fought PANDAS,
  • several high dosage IVIGinfusions,

    Infusion out of state

    Infusion out of state

  • loss of one income in our family as I stopped working as an RN to care for my daughter.
  • I have shared in the pain and tears of so many other parents also fighting to save their children.

~ 1st Thessalonians 5:16-18 says:

“Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”

Yes, it has been a very challenging year. Yet, I am thankful… I am so thankful!!

I’m thankful for:

  • God’s abundant grace and my salvation,
  • The knowledge that these trials are temporary,
  • I am blessed with an incredible man for my husband – in so many ways and on so many levels, I am so deeply thankful for you and proud to be your wife,

    Thanksgiving Sunday

    Thanksgiving Sunday

  • We are blessed with two amazingly wonderful, daughters who seek God – Hope & Faith, we are so very thankful for you both and the blessings you bring to our lives,

    Hope & Faith - celebrating birthdays together

    Hope & Faith – celebrating birthdays together

  • Family – I’m thankful for you!  Although my mother continues to work, she has been especially helpful in supporting us with practical help in our home when she is able.
  • Friends – I’m thankful for you!
  • We are so thankful for our Pediatrician, as well as the Researchers and Doctors whose work helped to accurately diagnose and is helping to treat Faith’s strep infections and auto-immune disease,
  • Thousands of donors we will never know who donated plasma and/or blood that was made into IVIG (Intravenous Immune Globulin – approximately 10 thousand donors per infusion) for Faith’s infusions,
  • So many people who have prayed for Faith’s health, each of us individually and for our family,
  • stable employment,
  • our home,
  • God led me to design an awareness ribbon for PANDAS-PITAND, then led me to launch an organization: PPARS (PANDAS-PITAND Awareness & Research Support) to raise awareness & support the research our children so desperately need – click the link to visit PPARS website.

    PANDAS & PITAND Awareness Ribbon

    PANDAS & PITAND Awareness Ribbon

  • God also allowed me to present for PPARS at the IOCDF conference in San Diego in July, where I spoke with so many individuals and families who were either living with PANDAS-PITAND, had never heard of it and were seeking information and even adults who told stories about their sudden onset of OCDin childhood following a strep infection.

    IOCDF conference 2011 exhibit for PPARS

    IOCDF conference 2011 exhibit for PPARS

  • I have also shared in the joys and triumphs of many other parents fighting for their children… and winning back their health!

    Faith and I were chatting with another parent at the IOCDF conference 2011

    Faith and I were chatting with another parent at the IOCDF conference 2011

  • I’ve met several of the top researchers and doctors who are working very hard to help children with PANDAS-PITAND and have been so fortunate to learn so much from them!  Click each pic to learn more about them and the urgent work they are doing.

    Susan Swedo, MD, Chief of the Pediatrics and Developmental Neuropsychiatry, NIMH

    Susan Swedo, MD, Chief of the Pediatrics and Developmental Neuropsychiatry, NIMH

Madeleine W Cunningham, PhD, George Lynn Cross Research Professor, Autoimmunity and Infection  All proceeds through PPARS support Dr. Cunningham's pivotal PANDAS research

Madeleine W Cunningham, PhD, George Lynn Cross Research Professor, Autoimmunity and Infection.   

 Proceeds raised through PPARS support Dr. Cunningham’s pivotal PANDAS research.

  • God kept my husband safe during the accident and quickly provided another car,
  • Hope is healthy, thriving and growing in Grad school, working hard in student teaching and research (she loves both!) as she seeks God’s plan for her and is on the brink of launching her professional career,
  • Faith has shown remarkable courage and determination to not only be healthy but she also seeks to thrive in the face of many challenges, 
  • Although she’s had two recent hospitalizations and is catching up on missed school work, Faith is back in school this year, working hard and maintaining honor roll status in her college prep middle school program,
    First day of 7th grade - after months on homebound education

    First day of 7th grade – after months on homebound education

  • God is healing Faith and instilling in her a strength and courage that is amazing… I’m excited to see where He will lead her,

    Thanksgiving 2011

    Thanksgiving 2011

  • Hope was able to safely take two spiritually-related trips this year that have drawn her even closer to God in her Christian walk,

    Hope studying Scripture in Israel

    Hope studying Scripture in Israel

  • We live in a free country, in a beautiful area and while we may face challenges, we have what we “need”,
  • We were asked to share our story of Thanksgiving with our church family last Sunday… which perhaps turned out to be as much or more of a blessing for us as others,
  • In all the traveling we have done this year, we have all been safe,
  • We have each grown closer to God and to each other as a family, even in the midst of challenges… what a blessing & ultimately, this will matter so much more than the temporary challenges we have faced and are facing!

    Thanksgiving 2011

    Thanksgiving 2011

For these and so many more blessings, we are thankful… that God remains always in control and we can claim victory in Christ and peace in Him!  We have so much for which we are thankful and so blessed!

For so many families whose children have PANDAS-PITAND (PANS: Pediatric Acute-Onset Neuropsychiatric Syndrome) such as ours, there remains an urgent need for research.  Anyone wishing to make a tax-deductible donation to support PANDAS research, please go here for information:  PANDAS-PITAND Awareness & Research Support 

~ Jeremiah 29:11 says:

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Wishing each of you Thanksgiving blessings and a very peaceful Christmas and 2012!

Off all antibiotics temporarily

As most of you know, Faith has been on antibiotics most of the past 15 months to try to eradicate the resistant strep throat infections she has, that lead, in her case, to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).  She’s has not attended school since mid-December & soon after a hospitalization for several days at Christmas, she started Homebound Education to keep up with her studies.  She’s worked very hard on her school work and her grades are good; I anticipate she will make honor roll and I am so proud of her!

However, the strep infections continue to resist treatment.  Thus, our pediatrician is pulling her off all antibiotics temporarily to allow them to get out of her system so that we can do a C & S (culture & sensitivity), in hopes that this will, once and for all, give us the information we need to choose the correct antibiotic(s) to eradicate this incredibly virulent Group A beta-hemolytic strep infection.

She took the last dose of her antibiotics yesterday morning.  Just as I was learning about a social situation she struggled in while at school today and we were discussing it, she declined into an episode.  This one included severe separation anxiety where she was unable to detach from me (literally and physically), unless there was a locked door between us so I could use the restroom, at which point, she became panicked (had a panic attack), tried to get through the door (in her panic to get to me) and became mute… she was able to write what she wanted to say (although with barely legible handwriting… see handwriting examples below), but could not speak for a while, and then, not clearly enough to be understood.

It lasted probably about 1/2 hour for the worst of it.  Poor child… my heart breaks for what she goes through when the antibodies attack her brain like this.  All I can do is imagine what it must be like to endure this medical condition.

Prayers for her (and the results of the strep culture that will be done this week) are especially appreciated these next few days as she is without any antibacterial support as we seek to determine our next step for that medication to eradicate these seemingly never-ending strep throat infections.  Also, she is trying to attend this final week of school (last day is Thursday, this week), making it more of a challenge for her than being home.  Hopefully, this difficult week will pay off with great results if we can gain valuable information from the C & S.

Please see below for more insight into this condition with handwriting samples of hers over the years, both when she is not afflicted with this condition and when she is.  As always, if you should have questions at any time, please feel free to comment or use the Contact Us page to email us.  Thanks for following our story; God is with us on this journey!

Second grade, spring 2008

Homework in 6th grade, Spring 2011 (taking antibiotics, but strep not yet clear)

May 8, 2011 for sample on right on card (uncertain of date for left sample on paper) Sample on right -> taking antibiotics, but not yet clear of strep infections... 2 days post IVIG infusion @ higher dosage

June 13, 2011, evening -> middle - end of episode (typical sample when episodic)

Home – infusion # 6

We returned home from my nephew’s wedding and my Granny’s memorial service this weekend and Faith had part two of infusion # 6 today.  She has about a week left on this 14 day course of Rocephin (following 2 weeks of Clindamycin), but her throat remains red and sore and she says she still feels “streppy”.  We have another appointment with a specialist this week, who is considering plasma exchange in her case as we are no longer seeing the dramatic improvements with the high dosage ivig infusions that we did in the beginning … and we’re having so much trouble eradicating the strep throat – that is another piece of the puzzle we need to resolve.

We woke this morning to a bit of a flood in the kitchen.  A broken pipe for the downstairs AC was dripping (mmm… perhaps dripping is not the best word… flowing, yes that is closer) inside the kitchen exterior wall, soaking all the wood and insulation in the wall as well as the wall itself, the subfloor wood and we’re not yet sure what else.  Fortunately, a plumber arrived fairly quickly and was able to go fetch the appropriate elbow joint to repair the pipe.

The insurance company’s restoration service is here now and working on ripping out walls & floors – the kitchen floor and family room carpet will have to be replaced as well as some personal effects sitting in that area.  Looks like we may lose functionality of our kitchen for a while.  But… even as overwhelming as the shock of the water everywhere, the damaged flooring and walls, the unbelievable mess… we are blessed that insurance will cover all but our deductible.  So, we’ll take this with the rest… one day at a time, trusting God will work everything according to His plan.

And… gosh… we sure do hope for a break and a vacation soon!  Whew!

Scholastic success!!!

Even as Faith continues to struggle with a wide array of symptoms due to her recurrent strep throat infections and PANDAS, as well as enduring heavy antibiotics and IVIG infusions, she works very hard to rise above these challenges and remain on track with her schoolwork.

She has completed most of her required schoolwork for this school year.  She still needs to complete a research paper for English and take some practice SOL’s to determine mastery of the material; however, she’s pressing through even with daily obstacles.

Her grades are as follows:

English                                             A+  (97.3)
Math 7 for 6th grade                      A+  (100)
History                                             A+ (100)
Science                                             We are awaiting final results for this class, but looks like she’ll wind up with a B.

Additionally, she has been accepted into the Advanced English class for next school year.  This places her in advanced Math and advanced English, which will be important courses as she enters and progresses through high school.

This school year has not been without cost for her.  It has not been without pain.  It has not been without hospitalizations.  It has not been without several 911 trips to the Emergency room.  It has not been without worry, doubt and fear… for all of us. Meltdowns too.

Would you indulge a mother swelling with pride for just a moment?  Faith has worked very hard in the face of extremely challenging situations.  She has persevered.  I am proud of her.  😀  Actually, I’m always proud of her, because she is mine.  I’m so impressed today at what she has accomplished.  I know at what cost she achieved this. 

Way to go, kiddo!!! 

… and, I know who carried her through this, too.

God remains in complete control of everything – He is always faithful, always powerful, always present and has carried us through this entire ordeal, as I know He will continue to do as we continue to seek healing for her.  We are not there yet and will continue to explore/pursue aggressive treatment over the summer as we remain locked in battle for wellness for her.

We also know that your love, prayers and support have played a role in helping her successfully complete this school year.

You may be familiar with the saying, “It takes a village to raise a child.”  I cannot close this post without huge thanks to all her teachers, who have been incredibly supportive this entire year.  A special thank you to her Homebound Ed teacher, who has patiently guided her through as he met with her once or twice weekly these last several months.  Our only regret is that she was unable to be *in* school this school year, with such an excellent faculty.

Thank you, each of you, for your part in her success.  Faith, I am deeply proud of you; I know you will accomplish great things… you already are!  ♥

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!”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

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