A day in the life of a Tootle

Its almost August......

noreply@blogger.com (Tootle Mom) — Fri, 30 Jul 2010 16:05:00 +0000

She doesn't understand it...but she knows its "masto". I think her grandmother taught her! "scratch my masto mommy." is the tagline of the summer around here!

But we have come so far.....

Seriously

noreply@blogger.com (Tootle Mom) — Tue, 20 Apr 2010 02:02:00 +0000

8am - Alyssa sick AGAIN!!!!!!!! Swollen throat, throwing up!
In the car with Seth who has been complaining all morning - he has to go to school and Alyssa does not!
8:10 am - coffee ( lukewarm at this point) tilts in car spills a little on Seth who tells me he CAN NOT GO TO SCHOOL LIKE THAT!!!!!!!!

8:11 Decide to check him in late and scurry through Walmart for a cheap shirt and shorts and oh underwear because, they are wet too! Walmart was closer than home!

8:12am look down and realize not only is my gas light on, but the gauge is BELOW the empty line!

8:20am began self check out at Walmart....shirt, shorts, underwear, oh and socks because, well just because!

8:21am realize my check card is SITTING ON MY OFFICE DESK AT HOME! I manage to find one slightly bent check in the bottom of my purse that I ended up not using a few days before!

8:22am apologize to the lady behind the register that I had to write a check because, I thought I had my card....

She does not reply....she walks me to the register and looks at my signature on my check and says..."the machine will not take this check because you wrote it with magic marker." Ummmm.....its a Sharpie PEN, not marker, its not even red! Its black! FINE POINT Actually ULTRA FINE POINT......and I think to myself, no way walmarts POS is sophisticated enough to know
"magic marker" - I tell her its the last way to pay at this point and to please just "try" to run it through even though I signed it with "magic marker"!!!!! I also write it over at that point for $20 (remember I am below empty!) Total $40.06....She runs it through and says she can not believe the machine took my magic marker...I am screaming inside...this is not elementary school lady...its NOT A MAGIC MARKER! Of course I say NOTHING! Then she hands my check back, with the receipt...."Ummm.....where is the $20, you know the one I needed to GET THE GAS!!!!!!" She says...."oh the machine must of not entered your $20 cash back....UUUGGGHHHH....now the MACHINE enters the amount you want back???? Finally I say, "oh I thought you enter it in..."
She says, "Yes I do, but I did not enter it because, I figured the machine would not take your check anyway because, you wrote your name with magic marker..." NO LIE SHE SAID THAT!!!!

8:30am drive home to get card
8:35am drive back to gas station and get gas
8:40am check my son into school who is now TARDY!

Drive back home ...... make an appt with the ENT for Alyssa because, seriously who gets sick this much??? Fill out the paperwork from the site so that whomever takes her the next day will have it!

12pm realize I missed the all so important meeting at the school for Alyssa....that was at 1030am! I got side tracked into writing an estimate for Davids business while holding my youngest in my lap who is saying over and over "are you gonna talk to me mommy?"

2pm glance over at the babies princess table and realize EVERY CF card I own is on that table!!!!!!!

4pm finish the estimate....YES 4pm.....throw my camera in the bag and head out for a shoot.....

5:10pm arrive for my 5pm shoot and realize all of my CF cards are back home on the princess table probably being eat or licked by a two year old....

5:15pm apologize to my mom at the shoot (who I know thank the lord) run to Kroger where all the CF cards are sold out....run across the street to Walgreens find ONE...it holds as much memory as a toy camera! ( I shoot in RAW!) Its locked....because its $39.99....FOR THAT LITTLE MEMORY! Oh well....I tell the lady, I need to get that card....she tells me the one lady who has the key cant be found....WHAT???? I wait, wait, and wait some more when this girl comes strolling along right past me and proceeds to check a gazillion people out and SHE IS THE ONE WITH THE KEY?!?!?! I ask the other lady who has nothing to do..."can you get the key and just get that one tiny little card out???" "PLEASE???" She says...."no she is the only one authorized to use the keys...." So I wait for her to check out the people...she opens it gives me card....and I turn to have her check me out and she says...."oh you can take it to that register and pay for it..." ya know the one with the lady who isnt authorized to use the one set of keys to this stores name...the one who had nothing to do the whole time the authorized lady checked people out. Ya know???

5:45pm begin doing what I love....photographing beautiful kids that are very animated and fun! After that everything seemed okay....

Tomorrows a new day!

Guess where I have been???

noreply@blogger.com (Tootle Mom) — Tue, 23 Feb 2010 04:12:00 +0000

www.kristytootle.com

Too good for words....

noreply@blogger.com (Tootle Mom) — Tue, 12 May 2009 16:41:00 +0000

Results for mom and baby

noreply@blogger.com (Tootle Mom) — Wed, 06 May 2009 17:07:00 +0000

We did get the results back on Ireland....her Mast Cells within her GI tract were within normal range and were evenly distributed, where there were increased numbers, inflammation was present which explained the higher numbers....the nodules in her colon, were indicative of lynphnode aggregates and in some areas they were listed as hyperplasic - meaning over supply/a lot/too much...they still stained all of the normal mast cells, and they were negative for CD25 and C-Kit...which brings me to another point....I just got my own biopsy back today from the dermatologist.

It was positive for BOTH TMEP and UP Mastocytosis. I have had an enlarged spleen for months now with no apparent cause. The Hematologist and PCP have been asking me to go forward with the BMB for a few months now and I just wanted some type of "evidence" to move me in that direction...so I guess I got it now. I have suffered from "itchy freckles" forever.... It even sounds stupid to type it...."freckles that itch?" Seriously....however, I do have to tell you, when Ireland was diagnosed in November, I sent all kinds of pics to Dr. A at Harvard who replied to me and told me that the pictures I sent, "do not conform to any type of Cutaneous Masto.." that's the most frustrating part...when the doctor sent that....I gave up on searching for reasons to feeling so tired and sick.

Then on a literally on a whim, I made an apt and got the biopsy....even while he was biopsying me, he was saying, "this will be negative, this disease is so rare." I asked him what else causes these type of skin reactions, he scratched his head and said, "nothing!!!" He is the doctor who uploads all those pics to the ADAM dermatology website for OTHER doctors to recognize Mastocytosis....and even he had me doubting myself. He called today and congratulated me for diagnosing myself correctly:) Which honestly was SO bittersweet...

I am glad to know, but also know I am the one who gave Ireland this disease. I also, have never told anyone here, but my other kids have "spots" and have been diagnosed with everything from bug bites to eczema, and my son who has horrible GI symptoms, "just" IBS. They are olive skinned and Ireland is very fair....their pigmentations would be very noticeable on Ireland, but on them they just look like, well, light "spots"....they are on their arms and legs and my son used to scratch them til they bled...at which point the PCP told me to try "bug spray"...UGGGGHHHH!!!!!

They are 8 and 6 now, their spots don't flare much now. Mainly with Motrin, Virus, and HEAT as well as showers... My son and daughter complained ALL the time over the years about these "spots"/bug bites/exzema....this is where the medical system makes me numb.

After Ireland was born, we fought hard for her...still being told various crazy things, but we pressed on and FINALLY got the answer. I only wish I would have done that for my other two.

Now, they will test Irelands Pancreatic Enzymes to try and find out WHY her fecal fat is so high...her body is not breaking the fat down as it should. We still have not gotten the testing results back from NY.

Never a dull moment here...

Procedures~

noreply@blogger.com (Tootle Mom) — Sat, 18 Apr 2009 17:31:00 +0000

Thank you all for your support (and prayers)....Ireland did well with the procedures!

She was given Versed when we arrived, the GI doctor got caught up in an emergency procedure so the Versed peaked before they were able to get her back to the OR for the general anesthesia. The thought process was the Benadryl would sorta "counter act" the Versed (the agitation, emotional side effects, etc..) when it peaked. IT DID NOT...the nurses were a bit perplexed by this as they said it usually works and most kids just fall asleep (of course masto kids are not MOST kids - LOL!). Fits of rage ensued for at least 30 mins and she had already met her limit of meds (IV of corticosteroid and Benadryl). So we waited, and waited, while the nurses gathered in the hall with us and never left our side and actually had a syringe full of epinephrine nearby and ready:) Finally, she conked out and I laid in her hospital bed with her passed out on my chest. When it came time to go to the OR, they wheeled me back with her still sleeping on me as they did not want to chance her waking in another fit of rage:) Once back, the anesthesiologist came in and I carefully removed her and laid her on the bed and exited.

(Her after recovery)

(she got bored in recovery)

(daddy got bored in recovery - he begged for a pic with the bird)

(good enough to walk)

(daddy told the nurse we were ready to go:)

The procedure lasted a little over an hour and then she was taken to the initial recovery in the OR. She was brought back to me about 30-40 mins after that. She stayed in post recovery for 3 hours. The tissue samples were collected in the Ileum and the Colon. "Video wise" everything looked good in her esophagus and stomach. He found several lesions (we were able to see his pictures and bring them home with us) in her colon. He said he was unsure what these were, but he did biopsy them. Half of the samples will be sent to MAYO for mast cell staining (C-Kit and tryptase as well as toluidine blue) and the other half will remain at the Childrens Hospitals labs for the rest of the "normal' GI testing.

The Childrens Healthcare of Atlanta Hospital

- Scottish Rite campus,

was PHENOMENAL in her care!

Ireland has not gained an OUNCE since November 2008. Hopefully, these test will shed some light on what is driving that. All I know at this point for sure, is that her fecal fat lipids are very high. She was unable to have solids from Tuesday night on (until after the procedure on Thursday at 5pm) and she never asked for food...I just don't get that..she was able to breastfeed, but it just bothered me so much that she acted as if it was nothing to "not eat"...her appetite has always been hit or miss, but I have always offered food all day worried about her weight gain or I should say, "lack of weight gain"...but I was sorta saddened by the fact she seemed unaffected that no solid food was available.

(going home!!!!)

Biopsy plans for 04/16/2009

noreply@blogger.com (Tootle Mom) — Thu, 16 Apr 2009 02:43:00 +0000

The plan is (I had a meeting today with the anesthesiology dept. at CHOA) we are to arrive at the childrens hospital at 10am. At 11:15 they will give Ireland versed to make her sleepy. After it kicks in, an IV with Benadryl and a steroid will begin. At 12pm, they will take her to the OR and give her fentanyl (no lidocaine as its a trigger) and then put the mask on. Once she is out, they will insert a breathing tube and perform the procedures. She will be in recovery for about 45 mins before we can see her. Her biopsy samples will be shipped to the Mayo Clinic in Minnesota as its the "best" lab for these stains (CKit and Tryptase stain).

They plan to observe her longer than the normal patient. So we will be there for at least until the evening. We were told to pack bags and except to be admitted if needed, but that it would be unlikely. All doctors are on the same page, and our Immunologist was on the phone today with Harvard. I feel so at peace knowing three different "masto specialist", from all different states, have willingly consulted on her case.

I will update as I can...thanks for all of your prayers.

Please specifically pray for NO REACTIONS to any of the meds or equipment on the OR, temp in the OR, etc....

Unspoken language and GI Biopsies

noreply@blogger.com (Tootle Mom) — Sun, 29 Mar 2009 13:08:00 +0000

**new pics, prayer request, and praises, follow this post**

Experts say that as much as 55% - 75% of the English language is non verbal (depending on which study you read). Some of my most precious memories with my own mother were in non verbal communication. As a parent, I am learning how non verbal language can hurt more than if you had said it to my face - verbally. For the first time in my life, I kinda wish I myself suffered from a non verbal learning disorder!!! Okay, maybe not, but I have thought it!

I have copied and pasted below my post to my mastokids.org email group. I did not feel like recapping everything here....I have been waiting for some phone calls back from the doctors today and then I will update with the new info.

We have been in Disney for the past week and the kids have had a blast....I, as the adult on the other hand have much mixed emotions about it...mainly because, I found myself consumed with Ireland's Mastocytosis. Originally, at diagnosis, I was okay with everything and found peace in the fact that even though we are dealing with something off the charts in terms of rarity, she would live, should would grow up and be a vibrant young lady...We have had to climb some hills here in the last couple of months with GI issues, but overall, hey, we have it made....

Despite all diet efforts and meds, the stool samples just returned (last Thursday) from the GI and Ireland's fecal fat lipids were high and they want to move fwd with two biopsies.

I am now consulting with her doctors in how best to move fwd. We want to make sure ***if*** we do this, we go ahead and get the tissues sent to the best lab to be properly stained for mast cells while we are already in there....sigh...this was just not what I wanted to hear...not at all. I have attached pics of the latest reaction...the wrath of taking her to enjoy Disney World!!! Another huge sigh!!!! I am sick of Zyrtec, and Benadryl for skin reactions (mainly because, I don't feel they work - heck I don't feel they do anything at all sometimes!!!) I am sick of doctors, specialists, the unknown, searching on google, and everything else in between...I am tired and growing more weary and anxious...I am worried about her being put under for a procedure we may or may not get - don't get me wrong...I know there are a lot worse kids out there and plenty that have been under for procedures...but I am anxious and I can not help it...

At Disney, this was the first time we have been in such large crowds around so many people and frankly, Ireland just sees the sun and breaks out...is it heat or the sun, or the food she ate at breakfast...or one of the multitude of chemicals still in the "natural" sunscreen???? - I drive myself crazy - last Summer she was so little - we weren't out in crowds and she was being worked up for Lupus at the time and thought she had a photo sensitivity - so we were not out and about much! At Disney, it was the unspoken words of strangers that cut like a knife...the stares, the double takes, the strong sensation to burst out, "I am not a bad mom!!! I did use sunscreen!!! Its not a sunburn!!! Its Mastocytosis!!!!" Then there were the stares that read like a book, the obvious, "wonder if that's contagious - what does that baby have??" By the end of the week, I wanted to tattoo on my own forehead, "my baby is NOT contagious, and sunscreen HAS been applied." Learning to move on and forget about it is harder than I ever realized...my heart breaks for her for when she is older...why the face??? I cant explain it to everyone and I surely cant explain it all away...

Asking for prayers in the following areas:

1. that the doctor takes the biopsy in the correct area (for proper tryptase stains)

2. that we are able to get the tissue samples to the proper lab (likely mayo)

3. that she does not have another GI disease (these CAN occur in masto kids)

4. that all of the specialist work together to make sure we are all seamlessly on the right page

5. that she DOES NOT HAVE A REACTION to the anesthesia (like shock! - shes never had anesthesia)

6. that we find a good anesthesiologist (one that knows how to handle of all this!)

7. that her face calms down from the latest reaction

8. approvals with insurance to go very smooth

I am praising God for the following (and asking you to do the same):

1. that we *just* have masto

2. that the gastrocrom seems to be working

3. that over all she is a healthy, spunky, tot!

4. that she has lost NO more weight!!!

5. that we have such great doctors who email me and call me directly

6. that her entire body is not covered in "spots" and though her face can get bad - she still (skin wise) is just a mild case of masto!!

7. that feeding tubes are not necessary for now - as they were being seriously considered three weeks ago!

Thanks for reading and lifting us up!!!

Just Pics!

noreply@blogger.com (Tootle Mom) — Tue, 03 Mar 2009 19:16:00 +0000

Bonnie ~

noreply@blogger.com (Tootle Mom) — Sun, 01 Mar 2009 00:54:00 +0000

Clicking on the picture below will take you to a blog about a very young lady that recently lost her husband - too young to lose a husband! Although I have followed her blog for awhile, she is in need of all the prayers she can get right now. You see - not only did she lose her husband in January, she is also pregnant! The child in the picture below, is their second and oldest child, Caroline.

Below the picture/link is the story of what happened to her husband...read it and then click on the picture to go to her site...

I have copied and pasted an excerpt of a post from her blog....

Terrible Tragedy - Posted by Bonnie in January 09

Thomas went to heaven Monday, January 5th 2009. I really cannot believe I am writing this, but I have so much to say and I believe it will be of value to Caroline and new baby in years to come. At this point, I am only able to say a few things that I feel I have to write and then I will fill in more details and stories in days, weeks and years to come.We went to church Sunday January 4th, ate lunch with family and friends, spent the evening watching Planet Earth and playing with Caroline, eating ice cream for dessert, and went to sleep, Thomas woke up to go to school early on Monday morning. He kissed me goodbuy, I was still in bed, but awake. He got in the car after getting my love note (for lack of a better description!--see next post,) buckled his seat belt and two minutes later he hit an icy patch on a bridge and went to heaven. I got a call around an hour after the accident telling me to come to the hospital. Another hour later they gave me the news.

Please lift Bonnie, Caroline, and their unborn child up in prayer tonight...

For Grandpa and Grandma in CA~

noreply@blogger.com (Tootle Mom) — Fri, 27 Feb 2009 14:51:00 +0000

Video taken 2/5/2009

Irelands favorite thing to do....

Remember Cora?

noreply@blogger.com (Tootle Mom) — Mon, 23 Feb 2009 05:58:00 +0000

I noticed a week ago that people were making things on the storefront in honor of Cora on Etsy. They are donating the proceeds to her playground...If you are interested, please click the buttom on my side bar and get something for yourself or someone else and help little Cora's name be honored! In one week so many more people have jumped on board...there is a lot to shop through....you can also just go to Etsy and search for Cora Paige....

Here is the story from Etsys blog...

Love is a Movement: The Cora Project
Story by joyshope, PamperingBeki

In a small town in the middle of Kansas, you get to know people pretty well. Everyone seems to know everyone's aunt, cousin, brother, dog, or teacher. So when we recently learned that Cora, the 10-month-old daughter of our friends, The McClenahans (aka "The Macs") was diagnosed with stage 4 cancer, it rocked our community. Cora's mom, Jessica, is a blogger and word quickly spread throughout the blogging community. Thousands of people began visiting their blog, leaving messages of love and encouragement. Sadly, Cora Paige passed away only 3 short weeks after her diagnosis, but the strength and faith of her parents has spread and inspired people globally. In lieu of flowers at her memorial, The Macs asked for donations to be made to help build a playground in their baby girl's memory - Cora's Playground. Etsy seller joyshope recognized a strong need among people who wanted to do something to help, but no one was quite sure what to do. She offered the simple suggestion on her blog, http://www.joyshope.com/2009/02/leaving-legacy.html that Etsy sellers make items to help raise money to build the playground. The idea exploded into something beautiful! Now we are launching The Cora Playground Etsy project. Over fifty shops are donating their time, their love, and their creations to help a sweet family who many have never met, but have changed our lives and our hearts forever.Please search Cora Paige to see the listings. Know that your purchase will send love to Kansas. It will help build a legacy, a playground for generations of children to enjoy. A legacy for a beautiful girl who's time on earth was much too short.

The toilets dirty....

noreply@blogger.com (Tootle Mom) — Sun, 22 Feb 2009 00:34:00 +0000

Alyssa is sick now...(to be updated on our week from down under - and I'm not talking about Australia people! - read the rest of the post...) But first, here is a conversation I had with our eldest child, ditzy daisy... errr, I mean Alyssa....

Conversation that ensued yesterday:

Alyssa - mama, I threw up

Me- oh no! Your sick now??

Alyssa - I threw up on the floor

Me - WHAT?? is it everywhere? Is it on the carpet?

Alyssa (talking over me) - no, no, no...I threw up on your bathroom floor...

Me- why? the toilets right there...could you not make it? (feeling bad because, she must be so sick - she never misses the toilet!)

Alyssa - well, I went to the guest bathroom first because, it was closest to me, but there was something gross in the toilet...

Me (trying to absorb what I am hearing- she was getting ready to PUKE in the toilet) - why would it matter if there was something gross in the toilet? You were going to puke in it...

Alyssa (talking over me again) - I saw something in the toilet so i tried to flush it so it would go down BEFORE I puked, but the water was not going down and I had to puke so bad so I LEFT THE BATHROOM TO RUN TO YOUR BATHROOM and when I got there, I couldn't make it to your toilet...

Me- uh.... okay...

Alyssa - sorry mama

Me - its okay. I need to clean it up.

Alyssa - oh! I cleaned it up!

Me - YOU DID?? (not believing what I am hearing - and wondering what "clean up" really means)

Alyssa - yes, it was not bad...

Me - hmm.....go lay down in your bed, I will get you some water....

I walk into my bathroom and step right into a pile of puke half covered by at least FOUR TOWELS....

Me- Alyssa, why did you use put so many clean towels over the pile of puke? You should have got me...

Alyssa - well you did not want me to touch it did you? That would be gross...

Me - yea that would be gross....

Thats Alyssa for you...covering the problem instead of fixing it...her room is very clean too, just dont open her closet:)

Our life has been one big chaotic ride since the 8th of Feb. It first started with Ireland getting sick...which then sent her Masto into one downward spiral. I became ill on the 13th!!! I would vomit and crawl back to bed, she would nurse and then she would vomit ON ME, I would crawl back to the toilet and vomit...it was ugly....I have not felt stomach pains and vomiting so violent in ages...Seth got sick on the 15th or was it the 16th? He spent two days vomiting his guts out...Ireland FINALLY stopped vomiting on the 18th...We spent the 15th in the Children's Hospital ER. She received fluids and sugar because, she was so dehydrated and hypoglycemic. She was very ill. We saw her PCP Monday which decided we HAD to make the step to see the GI doctor...she is losing weight and has been from the diarrhea that has been here SINCE SHE WAS BORN. Her bowel movements seriously smell like a 250 lb man entered the room...it WILL burn the little hairs in your nose....we have been averaging 8 diaper changes (bowel movements) per day!!! Did I mention we switched FULLY to cloth shortly after trying G Diapers?

We saw the GI doctor on Friday and he is having us collect 7 stool samples, she gets an upper GI on Monday, an U/S of her liver, spleen, etc...she may still need a biopsy of her small bowel and colon wall. I talked to her Immunologist today...How great is it that you can email your doctor, receive a reply within a few hours, and she calls you AFTER replying from her cell on a SATURDAY to "just check in and get an update"...I am so thankful to have her...so thankful beyond words! I know that a lot of people rave about certain doctors, but I never in my life have had a doctor sit and talk to me on the phone or in person forever and act like they don't have another care in the world besides your child - and she does it with such sincerity. Anyway, she thinks we may need to go ahead with the biopsy...she will have the biopsy sent to be stained for mast cells. There are a couple of things she and I aren't so comfortable with so she will deal with the GI specialist for me by phone on Monday....

Ireland's list of meds you ask? Oh, you didn't ask? Well, please let me tell you.....

Gastrocrom - mast cell stabilizer for the gut
Zyrtec - H1 blocker (Another masto mom mentioned we could get this in generic in disolvable pills for the little guys - if you know please email me)
Axid - H2 blocker
Levsin - as needed for spastic colon
Benadryl - quicker acting-extra boost H1 blocker - as needed
Epi Pen - when needed for major reaction

And believe me....this list could be MUCH worse....if you don't believe me just check out ol' mastomama's blog on my blog roll....and to think that I was one of the moms who barely ever gave my kids Tylenol or Motrin if their fever was not over 101 degrees!!

Sweet Cora.....

noreply@blogger.com (Tootle Mom) — Sun, 08 Feb 2009 14:53:00 +0000

Cora went to be with Jesus....

Please pray!!!!

noreply@blogger.com (Tootle Mom) — Fri, 30 Jan 2009 03:18:00 +0000

****UPDATE**** If you have not been following Coras site, please check it out and pray for this little girl....she is in need of much needed prayer NOW.....

This little girl needs your prayer......

Her name is Cora and she is all of 10 months old...

Here is her story in short...

Cora suffered from what seemed minor, frequent, symptoms and sickness

During a visit to the doctor for an ear infection, their world changed forever....

Cora has stage 4 cancer and it is ALL over her body....the have already removed a mass/tumor from her body and this little girl received her first dose of chemo last night...

(taken from their site)

Here are few things to pray for.

Praise:
For an excellent team of doctors and nurses

For the thousands of people that are lifting us up in prayer

Prayer:

For a miracle
That God would minister to Cora in way that only He can
That Cora would not be in too much pain and that the chemo would not make her too sick
That the Chemo would go smoothly, and not have any of the dangerous side-effects
That the test results would come back as the more favorable type of cancer
That God would continue to give us the strength that we need to get through this.
That the cancer would start shrinking soon and give Cora some relief

The family site is: http://themcclenahans.blogspot.com/

I Peter 5:10-11
And the God of all grace, who called you to his eternal glory in Christ,after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever Amen.

The Face of JOY

noreply@blogger.com (Tootle Mom) — Tue, 27 Jan 2009 18:08:00 +0000

http://www.iheartfaces.blogspot.com/

Im tickled Masto....

noreply@blogger.com (Tootle Mom) — Sun, 25 Jan 2009 20:06:00 +0000

I am tickled Masto...that is mastokids.org!

Why? Because, I have been chosen to be the new VP of Research for the entire organization! It also just so happens that tomorrow, I will have the pleasure of meeting up with a fellow masto mom, (who is also the president of mastokids.org and who just happens to live within driving distance of me!) for a lunch date! We are the only two in the group that live in the Peach state!

I am so excited about my new position! And flat out honored to be chosen.... I am looking forward to working with various doctors and research professionals from all over the world in hopes of shedding any new light on this terrible, terrible, disease...

Here are some of my new duties:

VP of Research: The VP of Research is primarily responsible for allocating funding for pediatric mastocytosis research. Specifically, the VP of Research: Develops annual research goals and recommends research priorities, Manages the grant process and ensures researchers fulfill the commitments of the grants, Acts as point of contact with researchers and interfaces with other groups focusing on mastocytosis or mastocytosis-related research (e.g., Dr. Castell's Registry), Reports on research status to the Committee and the organization, and Organizes a research committee of which the VP Research is the chairperson.

Pray for me (Amanda~ a special friend that prays feverishly for us all:)

I am going to need all the prayer support I can get!

Ireland has developed some nasty new bumps on her

backside...

These are SEPARATE and in ADDITION to the "diaper rash/masto reaction" I originally posted about a while back....you can see two new masto bumps (one on each leg). Poor thing. She has had several reactions the last two weeks. I took her on Wed. for a new blood draw just to check her tryptase and make sure nothing really crazy is going on. When she is like this we have to be so careful because, things can get out of control quick....we have tried to keep her away from stress, new foods, new fabrics, etc....as much as possible... She was due to start the nursery at church two Sundays ago for the first time, but we are trying to wait this latest reaction out first...Sigh....

Bye Bye 2008....

noreply@blogger.com (Tootle Mom) — Sat, 24 Jan 2009 17:14:00 +0000

Precious Faces....

noreply@blogger.com (Tootle Mom) — Wed, 21 Jan 2009 05:08:00 +0000

(You can click the button above or here to learn more about it.)

A photo contest all about faces!

And who could resist this one?

Just another reminder....

noreply@blogger.com (Tootle Mom) — Sat, 17 Jan 2009 23:43:00 +0000

Of how real Masto is....

(new flare up last week)

(Notice two new spots in the center of the cheek from the last flare up) Things may be good for awhile.....

(Ireland at 12 months w/ her mastocytosis awareness ribbon on)

Then things go haywire for reasons we still don't fully understand or see coming.

And behind is left a mark to remember the reality of its wrath.

Putt Putt anyone?

noreply@blogger.com (Tootle Mom) — Fri, 16 Jan 2009 19:55:00 +0000

Who says 13 months is a little too young

for a good game of putt putt?

I did skip a few holes
Chase a few balls that were not mine

Hold my club all the wrong ways

Insist I do it all by myself

And cause a few balls to travel off course,

But boy did I have a good time....I felt like one of the big kids.....

I feel awful!!!!

noreply@blogger.com (Tootle Mom) — Thu, 15 Jan 2009 01:35:00 +0000

I feel like I have been ran over by a truck!

Every since my MRI w/ contrast....I have been flushing, feeling faint, feeling sick, etc....

The MRI revealed bone spurs and a small benign tumor that is very interesting because, in research I have found that these blood filled tumors are loaded with no other than....

***drum roll please***

MAST CELLS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The tumor is on my T2 vertebra...interesting because, he only ordered the cervical spine and brain (which was normal) and it just so happens that they by accident "caught" images of the top three vertebra's of my thrombotic spine T1-T3....this is noteworthy because, when I checked in I told the insurance lady that I really should not be doing it because, the T spine hurts the most and the C spine was the only portion of the spine on the order....low and behold....they caught the top 3 vertebra's......

I am in limbo for real...

To find out if I have the horrible disease for sure and start the much needed treatment, I need several test of which no doctor in this state knows anything about..........I am screaming here....

I am torn between forking out the dollars to go to Boston and getting all of this over with or starting the task of getting orders from different doctors in this state, getting the orders to doctors in Minnesota...for three different test....then getting kits mailed to my home collecting my own urine and sending it all off....this can take weeks.....I cant even get the order done yet...

Sigh....I don't know anymore....I know I just don't feel good.....

Day 3 on Day 9 0r 10?

noreply@blogger.com (Tootle Mom) — Thu, 15 Jan 2009 01:16:00 +0000

Who's counting??? Yes, we are still doing The Love Dare book and no, we are not only on Day 3 because, we all suffer from ADD and can't follow through worth a darn.....we are on Day 4..... Seriously, we are on day 7......

So to recap.... In case you have been sitting around wondering what Love is and is not.....

Day 3~Love is not Selfish

We bought something for each other that said "I was thinking of you today..."

I filled a Rx...did that count??

Day4~Love is thoughtful

We had to call each other and ask if the other needed anything....this was weird beings we already talk on the phone about 20 times a day...

Day5~Love is not rude

We had to tell each other 3 things that was irritating about the other to the other without the other reacting negatively....hope that makes sense.....

Day6~Love is not irritable

Could not react with any irritation.....no comment....

Day7~ Love believes the best

We had to make a positive and negative sheet of paper about the other...we are saving the sheets for another assignment....oh yeah....I cant wait to see those sheets of Davids....can't wait....

Sweet Grandmother....

noreply@blogger.com (Tootle Mom) — Fri, 09 Jan 2009 03:23:00 +0000

This throw was crocheted for me by someone dear to my heart....she was my grandmother "before" she was really my grandmother....She made this for me 17-18 yrs ago to match my bedding on my water bed (you know that was long ago:)!! Frequently, you can walk into her home and find her making another one of these masterpieces.....

Mine now rests here on my couch many years later. It is washed and dried at least once on a monthly basis....it holds up beautiful. Its perfect in the Summer and Winter....and face it was handmade just for me:)

And here below you can see Seth's handmade blanket. Its been on his bed since he entered this world....it too has been washed and dried at least once a month....its 6 yrs old.....

And here we have Alyssa's blanket....all three of our blankets are HUGE....these are really throws...this blanket has been cared for like the other two....its 8 years old and USED to be on Alyssa's bed every night until someone else entered the world....

who doesn't happen to have a "handmade with love by the sweetest grandmother I know blanket"!

I regularly have to hear from Alyssa ,
"When will Ireland get her own blanket so I can have mine back?"

This blanket has been wrapping its love around baby "I" since she entered this world.....

Sweet Grandmother??? What will we do? Two children and only one blanket to share??

Surely, that will not just have to do??

So, I tried to crochet one on my own for sweet baby "I"...needle and yarn in hand, I was sure I could do it just like you taught me back then....

But I was only left with one long piece of crocheted yarn as I could not recall how to get back up from the other end....

Please tell me sweet grandmother, you have a solution to this pickle we are in....because, two children sharing one blanket is certainly no win.....

Love is kind!

noreply@blogger.com (Tootle Mom) — Tue, 06 Jan 2009 00:00:00 +0000

Day 2! Love is SO kind....and David and I (well okay ~ David, but I am coming around) really have started to enjoy this book. I have to be honest...he is way more into it than I am even though I bought it...I kept putting it off after skimming through it...rolling my eyes...he would look at me and laugh and say ~ " don't hate the book ~ Kristy~ the book is your friend!!!"

David is a "everything rolls off his back kind of guy", that is AFTER he has started several California ranging wildfires....! I, on the other hand have the fire hose in hand BEFORE the fire is even started...I mean I am a fixer....why would you not want things FIXED and TO THE POINT?? WHO NEEDS ALL THIS FLUFFY LOVE STUFF YOU ASK???? David!!!! That is why I am doing my lessons for David....one day at a time!

So anyway, we both did something kind for one another and both laughed at how cheesy the whole thing/idea was??? But it lightened my mood and I guess that is what the day was supposed to do anyway!

38 more days to go....38 more days to go.....