Thursday, June 26, 2014

Graduation Party part 2

Ready for a party??  Take a peek into Princess Grad Party from last Sunday night.. June 8,2914
It really did turn out nice.. For me throwing it together last minute and all ��
Princess & The SIL
The SIL's Family
A few pics of mine and DH families and our friends 
Meanwhile out in the yard
Back in the house
And back outside
The kids all had fun and the adults did also..

Thursday, June 12, 2014

Graduation Party part 1

Princess didn't want a huge party, so after Graduation we invited a few family and friends back to the house for food and fellowship... I didn't go all out but here are a few of the decoration I did throw out..
And here is the cake and cupcakes which my mother made for the party
Still can't get over that my baby girl is no longer in High School, but a College Freshman 

After Graduation pictures

Thought I would share a few more pictures from graduation 

Walking out after graduation
Hugging her great grandma, my grandma
This is her boyfriend, hmmm what should we call him on the blog?? What about "The SIL" that should work.. Anyways here is the SIL giving her a hug
And here they are posing
Back at the house here is a pic of me and Princess
And last one for this post will be my favorite girls, Princess, Sweet Pea, and my Little Princess 

Princess Graduated !!!!

  I know I said I would do updates to get you all caught up, sorry about that just been way busy..

One of the things keeping me busy is my baby girl #1, Princess had Graduation..
She had it last Sunday June 8,2014
So proud of her she has became an amazing young lady who has so tremendous strength and courage over the last year.. 

I love you Princess and Praying Gods will for you in the rest of your life

Friday, May 30, 2014

Moble blogging

It has been ages since I posted.. So much has happened, but I just downloaded the blogger app to my phone,soooo maybe I'll be better at keeping up with my long forgotten blogs.. 

Hmmm wonder if anyone even remembers that I have a blog ��

Wednesday, October 09, 2013

October 9,2013 PANDAS/PANS Awareness Day

Today is the First Ever PANDAS/PANS Awareness Day, and even though I don't get the time I would like to keep up with my blog, I can not let this day go by with out a post. 
PANDAS is one of the reasons, my blog time is a thing of the PANDAS..  because it has steeled way a normal childhood from my children.   I don't have the time right at the moment to share our story with PANDAS.  I'm hoping to find  time later today, fingers crossed..
I do however have permission to share one mothers story with you all... and If you lucky I"ll be able to share a lot more with you as I find time though out the day..

Here is her story.
PANDAS AWARENESS DAY…..this is Gianna’s Story

I share our struggle, so that others will not have to struggle.

When Gianna was 1 yr old, Gracie had strep 4 times, Skyler 3 times and I had it 3 times that year. We never swabbed Gianna for strep because the doctor said children that age rarely have strep and she showed no classic strep symptoms. However, she chronically had a fever spike that year of 101.8F. The fever would lower to 99.8F, go away briefly and return a few days later. She almost never had a normal body temperature. At the same time, her neutrophil counts (her immature white blood cells) were at a chronic scary level…just above leukemia levels which had us seeing a hematologist/oncologist for months. We now know she has neutropenia, so when she comes in contact with an infection, her body cannot make neutrophils fast enough to replace the ones her body is using causing illnesses to linger for long periods of time. A compromised immune system was building and creating the perfect storm for PANDAS.

Just before 2 yrs old, Gianna became very sick and a few days later her personality changed far beyond the typical toddler behaviors. She was always such a sweet, loving toddler. However, she turned into a raging, frustrated animal with blank stares and an inability to learn colors, letters, or retrieve words. I remember crying as I laid in bed asking Christian, “What am I doing wrong? I am parenting her the same as Gracie and Skyler, and they were always so sweet, compliant, and likable. I dread getting up every day knowing how difficult Gianna will be. It is like she changed overnight. I guess this is what the terrible 2’s look like. I guess I was blessed to have never gone through that with Gracie and Skyler.” I was heartbroken and exhausted.

Things calmed down between 2 1/2 and 4 yrs old, and I had no answers as to what changed her personality overnight and what brought my sweet little girl back…until Monday, Dec 10, 2012. You see…PANDAS parents can often tell you the day and exact moment they lose their child to PANDAS. She woke in a pee soaked bed. I knew something was wrong because from the moment I put big girl underwear on this child, she never had the slightest accident. Within minutes, I realized she had a fever of 101.9F. She was off…almost mute, stuttering, unable to find the words in her head. Her look was blank. The color in her eyes had disappeared…all that was left were BIG BLACK PUPILS. She sat watching TV while drinking a bottle and in a panic said, “Mommy, I can’t see. I can’t see.” I went to her and placed my hand on her leg so she knew I was there. “Mommy, I can’t hear you.” Pure panic…was my daughter having a stroke? In 2 minutes, her vision and hearing returned.

Off we went to the doctors, MRIs, EEGs, blood work and lots of worry. I came home from all of this to a phone call from my sister. “Jack just tested positive for strep. I just wanted you to know for Gracie’s sake since the kids were all together Saturday.” My heart sank…another child with PANDAS. This cannot be possible. It is supposed to be rare!

The weeks that followed brought me back to the Terrible 2’s Phase. She was totally non-compliant…down right defiant, but with a totally blank stare. She could not process anything we were saying to her. She was no longer behind those big black eyes. This was NOT my Gianna. She did not speak much except to tell me not to step on cracks (OCD), she had to wash her hands because they felt germy (OCD), she could not eat that food because it felt or looked weird (sensory issues), she was scared and could not sleep (anxiety), she was not hungry (anorexia), or she peed her pants (urinary frequency). And to voice these needs was a struggle…each word was lost in her brain which was literally on fire (Learning Impairment) and she spoke like a baby (Age Regressive Behaviors).

With a 30 day course of antibiotics, Gianna slowly returned as her immune system quieted down and stop attacking her brain instead of her infection. That is what PANDAS does. The immune system confuses the basal ganglia in the brain for the same type of cells as strep bacteria; thus, the immune system launches a full blow attack on your brain cause inflammation and neuropsychiatric symptoms.

Knowing the symptoms can change the outcome! Please, share the PANDAS awareness information I have posted today. 10 friends who have 10 friends share the information means 1000’s of  friends will become aware. You will touch a child’s life who is struggling right now, and the parents are sitting crying wondering where their child has gone.

I thank this mother very much for allowing me to share this with you... there are so many children struggling and so many parents wondering what is going on, what happened to my child, who is this child standing in front of me, why is my child acting this way... 

Folks we need to bring awareness to parents, to schools, to those in the medical community.  If you know the symptoms you can change the outcome.  
You can learn more about the signs and symptoms HERE

Help us pass the word along..  There is help for these children if they get the right treatment, but most children are getting incorrect Dx, they are being labeled according to the symptoms and not the cause. 
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Wednesday, February 13, 2013

Neuro Film Festival

If I could ask you for your help..
There is a PANS/PANDAS Awareness video entered in the Neuro Film Festival.
Would you all please take a minute or two out of your day today to head over HERE and vote for the PANS/PANDAS Awareness video and help spread the word about PANDAS.

Thank you for your help.

Friday, November 02, 2012

30 days of Thanksgiving.

Think I'll do the 30 days of thanksgiving thing even though I missed day 1...

   1st and foremost.. I'm thankful for a God who choice me before the foundation of the world, and who gave himself for me.
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Thursday, October 11, 2012

Another Message for Boston Children's Hospital

Just got done posting this over at the Boston Children's Hospital Facebook Page.. It is so very important that they start listening and start learning how to treat children with this disorder.
This is my 13 year old son, getting the RIGHT kind of treatment for PANDAS/PANS
Last year at this time, my sons world was ripped away from him when he got a strep throat infection. My perfectly happy, healthy starting lineman for the school football team woke up one morning, deadly afraid if he played football he would die, until that morning football was his life his most favorite thing in the world. But at the mention of football, he was hiding under a blanket crying uncontrollably, along with that came other fears, and two days after that he had a blinking eye tic, the next morning after that his head was turning to the side and a should shrug tic came also. He was also running a fever so into the doctors we went and he tested Positive for strep that day... They treated the strep but it wasn't enough to stop the immune reaction he was having to the strep.
This last year has been a roller coaster ride of doctors and hospitals and improvements in his conditions only for him to be exposed again to make things worse..
Unlike with my daughter who had PANDAS for a few years now, antibiotics alone wasn't getting his life back for him.. Steroids helped a lot but it was only a short term fix. So in July 2012 he had high dose IVIG done at Children's Hospital of Michigan in Detroit.
BCH Please Please Please.. educate yourself, learn about PANDAS/PANS what it can do to a child, and what is the RIGHT kind of treatment that can help and heal a child... Do not let another child suffer from the wrong treatment.

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