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Friday, February 22, 2013

Learning and Loving

A lot has been going on with all my human family members but the best news is that I am right in the middle of it and wagging my tail to cheer them up.

Lulu started her new medicine that she calls a "pokey". She cries really loud and all I want to do is cover her in kisses but Mom said I can't yet. Not until I can calm down when kissing because giving Lu the pokey is hard enough without me in the way. I try hard to to just bite the pokey and make it go away cause I don't like my Lu so upset.

I know it helps her. Mom told me all about it but that doesn't change how I feel.

Zo has been doing ok. She went to her special doctor again because it hurts to eat. Can not imagine not eating because it hurts...course Mom says I eat too fast anyway. But Zo has Gastroesophageal Reflux Disease and it's making her esophagus large and and inflamed. She was diagnosed with GERD when she was 2 but seems her medicine just isn't working.

ANYWAY so I have been leashed. This means I must wear my leash at all times...I kind of have this habit of jumping on the couch...and table...and chair...and people...and the counter...you get the idea. The leash is helping remind me to be on my best behavior.

I am doing my best to remember to go potty outside.

I am learning sit, down, wait, stay, hurry up (the potty command), and Me (means look at mom or whoever said "Me" in the eyes).

I start better leash walking soon. Mom said this is good cause I am super strong and walking me is not very easy.

OOOO and I am getting my very first vest soon!!!

Thank you to the two people that donated this week!
Thank you to Jeremy and Balto for the sweet card and the patches! When my Lulu wakes up I will share them with her.

Tuesday, February 12, 2013

Cryopyrin-Associated Periodic Syndrome

Jeremiah 29:11 (NIV) -- 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.

God has BIG plans for Lily and she will help many others one day I am sure. God knows our future and has given us hope.

Lily has been diagnosed with Periodic Fever Syndrome (PFS). Her specialist has sent blood work to Maryland for genetic testing to confirm though he is fairly certain the results will show us what he already knows. Lily's symptoms fit into the category of CAPS or Cryopyrin-Associated Periodic Syndromes more than the other PFS though this is not certain yet. Periodic refers to her having 'episodes' or 'flare ups' of the symptoms. There are seven genes that are affected by PFS and Lily is being tested on every one of them. Below is the information from a CAPS website that I have found very helpful.

CAPS (Cryopyrin-Associated Periodic Syndromes) is a group of rare genetic diseases that can cause rashes, fevers, joint pain, and other inflammatory symptoms. These symptoms often occur after exposure to cold or damp air or a drop in temperature. However, symptoms may also show up for no clear reason.

Cryopyrin is a protein responsible for triggering the inflammation and painful symptoms of CAPS (Cryopyrin-Associated Periodic Syndromes). A breakdown in this protein is what these diseases have in common. In the United States, there are approximately 300 cases, but many patients may remain undiagnosed.

Mutated cryopyrin found in CAPS (Cryopyrin-Associated Periodic Syndromes) sufferers stimulates a certain type of white blood cell to overproduce IL-1ß (interleukin-1beta). Normally, the immune system releases IL-1ß, among other substances, to fight off "foreign" invaders such as germs, viruses, and particles like pollen or other allergens. These foreign invaders are known as antigens.

In autoimmune diseases, the body fails to recognize its own cells and tissues. Autoimmune diseases include conditions like rheumatoid arthritis, lupus, multiple sclerosis, and Crohn's disease. In people with these diseases, immune response is provoked by auto-antibodies, which are proteins that attack the body's own healthy tissue. Once the attack starts, it cannot be switched off. For this reason, many of these diseases are chronic.

Cryopyrin-Associated Periodic Syndromes is different because the immune system produces inflammation even though there is no threat from antigens or auto-antibodies. This inflammation is caused by overproduction of IL-1ß due to a mutated gene.
Scientists have made great progress in understanding the genetic changes that start the chain of events that triggers inflammatory reactions in CAPS. When a trigger is present, cryopyrin assembles with other molecules to coordinate an inflammatory response. This response causes overproduction of IL-1ß, which leads to inflammation. Inflammation produces the symptoms seen in CAPS.

The reason Lily's doctor believes this is what has been going on is from detailed medical history and the many of Lily's symptoms "fit into" this syndrome. She is having less and less time between fevers and between symptoms. I have a diary of fevers and symptoms that I took down daily for two years.I gave up because I thought the fevers were just a weird quirk or many there was some type infection we just hadn't found yet. This isn't something 'new' or something that suddenly came up. This is putting together everything from the low muscle tone to the fevers and figuring out how to help Lily. This had been mentioned months and months ago by two different specialist but because it's so rare they just couldn't decide what to do or how to handle this. That was how we ended up seeing the specialist we are with now.

Lily does show signs of arthritis. Mainly in her knees. She has fluid build up on the knees and reduced flexibility. She can no longer lay her legs flat. The knees are always bent. Lily will begin with physical therapy again soon. She also has appointments with hearing and speech. I am filling paperwork out for the developmental disorder clinic. Lily has an appointment with the sleep clinic and will undergo a sleep study. Her neurology appointment is coming up in March

Lily begins a new treatment that was approved for children just this past January. These are daily injections and I have been warned that this medicine burns. But also told that it's worth it and that the few seconds of pain doesn't compare with the freedom to live somewhat normal. Her doctor also increase her pain medication.

Someone said to me the other day that this is a "life sentence" not a "death sentence" and I really have taken this to heart. She will live her life with this but at least she will live. Many others on this same road with a rare disease or disorder are not so fortunate.

Lily will be just fine and we will all just have to learn how to cope with certain parts of what her diagnoses means and learn to work around what can't be changed. But Lily is a fighter and has already overcome many obstacles in her way. She is our bulldozer and we expect her to do as she has always done...push right on through.

And for those times and moments when she needs help the most or needs more comfort she has Beezus by her side. Beezus is a St. Bernard/Great Pyrenees mix (aka The Horse or Fluffaluffagus) and she is currently in training as Lily's Service Dog. Beezus will be my eyes and ears as well as hands sometimes. When Lily gets an idea in her mind (like dashing into the road after a nickle shining in the sun) Beezus will keep her from harm. When Lily gets her daily injection Beezus will he there to give puppy kisses and help ease the pain. When Lily hurts to much to move or her fever is high and she needs to rest then Beezus can lay with her or fetch the ever falling cuppie. Beezus is a life changer already.

This page is for loving Lily and Beezus!

We appreciate your love and support and encouragement as we take this journey together.

Sunday, February 10, 2013

List of Needs

Mom wants me to post a list of things (she thinks) I need. I am lazy today so I am copying and pasting what she wrote earlier.

Many of you have asked how you can help. For those who are interested in helping we do have a PayPal account set up for money donations (look at the top of this blog). If you are able to help in anyway we would appreciate it.

Items in need currently :

Service Dog Vest -

Hot pink or the purple but ask Mom for the size since she needs to measure me. (http://www.etsy.com/listing/103920910/therapy-service-dog-sr-style-dog-vest?ref=v1_other_1)

Service Dog Patches for Vest -
Service Dog - (http://www.etsy.com/listing/111327356/access-required-service-dog-patch-35?)

In training - 2 of these - (http://www.etsy.com/listing/94596441/2x4-inch-service-dog-patches-13-to?)

Ask Before Petting - (http://www.etsy.com/listing/94596441/2x4-inch-service-dog-patches-13-to?)

WACKYwalk'r URBAN leash -
Lily has asked for the purple or pink one. We need the urban that is 1.5 ft.(http://www.wackywalkrstore.com/products/Wacky-Walkr-Urban.html)

Child Vest and leash together -
Ask me for size details
http://www.workingservicedog.com/childs_harness_vest.aspx
The leash to hook to the vest on Beezus then to Lulu
http://www.crittergear.com/Products.html?module_params[name]=ecommerce&module_params[categories]=1&module_params[page_title]=Leashes&module_params[action]=view_product&module_params[page_title]=Dog+Products+%3A+Leashes+%3A+Double+Ended+Leashes+&ecommerce_category_id=9&ecommerce_product_id=31

This is just a short list of what we need right now. This can and will change during our journey.


Thursday, February 7, 2013

A Medical Zebra

 I knew my girl was special. I knew it by the way she smelled. Just awesome and one of a kind. 

Yesterday while at one of the special doctors Lulu sees they found out how special this little human is. 

There is a term Mom has heard before and had shared with her niece just a few days ago. Never thinking it would apply to our girl. 

You see during medical school most students are taught :
"When you hear hoofbeats, think horses, not zebras"

A medical zebra is commonly understood to be a rare disease or condition. Medical students are taught to assume the easy and simple or common explanation not the crazy rare awesome sounding one.     

The problem is...people like my girl can be overlooked and taken for granted. Mom said lots of people ignored ALL the symptoms by taking each one and assessing it rather than putting them together. 

Lulu has a rare...very very rare...quirk in her genes...that's the inside of her body not the kind you wear...just in case you were unsure...

This quirk causes rashes, fevers, joint pain, and other inflammatory symptoms. These symptoms often occur after exposure to cold or damp air or a drop in temperature. However, symptoms may also show up for no clear reason. 

The kind of quirk Lulu has will be explain more when Mom knows more...right now we are waiting for test results to tell us what sub-type Lulu has. 

 Mom said with this particular quirk there are only 300 cases in the United States. But also said that a lot of people are undiagnosed...it's hard for doctors to know the patient has this condition because it's so rare.

Luly will get a shot every day to help her and the special doctor increased her pain meds. We should know more soon. 

I know I know this is confusing. When Mom is ready to tell the world then I will write the name of this quirk. 


Love
Beezus
















Tuesday, February 5, 2013

Walk with me!

Just getting started with this blogging adventure. I am wagging my tail so fast it's like a tornado in here. That's how super duper excited I am to tell my story.

So I was just a few weeks old...I know WAY too young to be living it out on the tough streets but my sister and I had no place to go. Luckily I found my way to this lady who I think has a heart of bacon (much better than gold). She took me in and found me a foster family. I hung with them a little while then...

BAM...

I met my girls! They played with me and my sister for almost 2 whole hours...that's like a week in puppy time!

I don't know why they chose me but I bark and pray nightly they did. I love my sister and I am so sad she is no longer by my side. We lived a rough life together and we all hope she is just as happy with her family as I am with mine.

Anyway so the blog is titled "Beezus the Service Dog" (that's me if you haven't guessed)..."Lily the kid with arthritis.

Did you know kids can have arthritis? I didn't. Mom said according to The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)  juvenile arthritis affects children of all ages and ethnic backgrounds. About 294,000 American children under age 18 have arthritis or other rheumatic conditions.My girl just happens to be one of them. Mom has a form of arthritis too. It makes her hands and feet hurt really bad. Lulu (aka Lily) should be finding out tomorrow what kind of arthritis she has. Her knees have fluid on them, her hands and feet hurt and are swollen sometimes, and her neck and back hurt too.

So juvenile (cause she is under 18) is usually an autoimmune disorder. That means that her immune system is attacking itself. Nobody knows why some kids and adults have this disorder and sadly there isn't a cure...YET!  Mom read on the NIAMS website that some people believe that arthritis in kids is a two-step process. The arthritis is there in their gene make up and then a virus or something sets it off. Mom believes this too. She remembers the exact day her world changed. The day Lily was the sickest. For a whole week Lily had a 105 temperature and not even the ER doctors could bring it down long or make it go away. Mom says Lily was different after that. She was not even 2 yet.

So the most common symptoms of this awful thing that makes my little human hurt (but need me the way she does!) are joint swelling, pain, and stiffness that never seems to go away. It can affect the knees, hands, and feet. Usually worse in the morning or after a good nap. Some kids (like Lulu) limp in the morning because of stiffness, are really clumsy, can have high fever and skin rashes, and have swelling of the lymph nodes in the neck and other parts of the body (~~you humans are just freaky!)

Kids with arthritis can seem to be great for a while (this is called remission...yes like in cancer when it goes away) but then hit a time when everything comes back ( commonly referred to as a flare up).
Arthritis in children can cause eye inflammation and growth problems. It also can cause bones and joints to grow unevenly.

Lily doesn't just have arthritis. She has had seizures (Transient Alteration of Awareness), low muscle tone (hypotonia), developmental delay (means she doesn't meet a lot of milestones when she is supposed too), developmental dyspraxia (means she knows what she wants in her head but can't make her body do it...also called the clumsy kid disorder), a sleep disorder (means we can bark at the moon til the sun comes up), kidney reflux (means she has a LOT of bladder and kidney infections), sensory processing disorder (means her sensory highway in her brain is road blocked...she doesn't like being touched but loves to be in tight spaces), abnormality of gait (she walks funny...another area I can help her!), tibial torsion (her right foot turns inwards), idiopathic toe walking (she walks on her toes and there isn't a medical reason...she is much better at keeping the whole foot on the floor), asthma (she breaths funny too...lots of meds for this and one of them is a LOUD machine), lactose intolerant (she cant have dairy...bad cow! No Moo for you!), and has near sighted and astigmatism (yep you guessed it...funny eyes too...but pretty ones...and the arthritis can take the sight away with something called Uveitis).


So you see...my girl has lots of need for me and well I have need for her...and her sister...did I mention Zozo (aka Zoey...big sis) has some special needs of her own.

She has the same vision problems as Lulu but Zozo's is worse and also she has an 'wandering' eye...her special eye doctor said the eye isn't lazy (Amblyopia) yet but wants to be so we have to keep an 'eye' on her! Zozo has asthma, has digestive problems, auditory processing disorder (means she hears the words you say but can't always understand them...her brain doesn't tell her what you are saying), sensory processing disorder (she has an issue with food...what a bizarre human!), her left ear doesn't hear that great though she had surgery not long ago to fix her ear drum. Zozo's special doctors think she has Autism. She is super awesome no matter what and a GREAT big sister to Lily.

I love my little humans and want to be the best service dog I can be! I have a ways to go but I hope y'all will stay for the walk.

Peace Barks & Puppy Love
Beezus