I will make crafts for sale, but my NEW focus is to help raise money and awareness for Microcephaly (and closely related neurological disorders) through fundraising and charitable events.
Smiles!
Ella modeling one of the auction's head-bands
Monday, May 21, 2012
Successful Silent Auction ~ 2012
Very glad and thankful that this past silent auction went well. We made a total of $219. We still have A LOT of items for sale and any of them can be bought on my Facebook page. The above items are available for sale, along with many others. Some have been reduced in price. First come first serve. https://www.facebook.com/HeartFeltElla?ref=ts
Tuesday, May 1, 2012
Silent On-Line Auction is Going on Right NOW!
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| Hot Pink and Black Rock and Roll Tutu and Hot Pink Head-Band by Gifts ~n~ Giggles |
| Little Microcephaly Monkey made for us by Chubby Ninja Crafts. |
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| Hello Kitty Basket made by me ~ Heather's Heart-Made Gifts! |
With a decent start, the Silent On-Line Auction was put up yesterday by 10 am. 11 items out of 46 items have bids on them and a beautifully made head-band and tutu set by Gifts ~n~ Giggles (Ms. Cindy) is currently in a bidding war! NICE! Hopefully ALL of the items will receive at least one bid.
Sunday, January 8, 2012
New for 2012: Molly the Micro. Monkey and Upcoming Fundraisers (UPDATED)
Molly the Microcephaly Monkey will begin her tour of homes that are effected by Microcephaly. Ella had some quality time with Molly. Each family will journal about their visit with Molly and put it on a Facebook that I will be creating as soon as possible. Pictures will be added on there and here and eventually a book will be created to chronicle her journey. I also plan on creating Molly the Microcephaly Monkey Awareness cards that can be given out to family and friends of the families that participate so we can spread awareness about Molly and her travels!
Right now I am taking a little break from raising funds for Microcephaly Awareness and helping March of Dimes mail out donation cards in my neighborhood and to my family and friends. See the left side of this blog for a link!
In February, I will return to Microcephaly fundraising. The fundraiser will be a Scentsy fundraiser: anytime anyone buys a Mollie the Monkey Scentsy Buddy from "Mollie's Microcephaly Fundraiser" from February 1st until September 15th, 50% (which is ALL of my consultant's profits. Thanks to Adrienne) will be donated to Molly's travels AND the Foundation of Children with Microcephaly. Look for the fundraiser invite on Molly's Monkey House: http://www.facebook.com/pages/Molly-the-Microcephaly-Monkeys-House/360536997295230 You can have your own Mollie for cuddles and don't forget to pick your scent pak to make your room smell wonderful and Mollie, too! She has a special little zipper in the back, so you can unzip and put in the scent pak.
Wednesday, December 14, 2011
Lessons Learned
So, I have learned some things in the course of my fundraising extravaganza! DO NOT fund-raise TOOO much around the Holidays. Everyone else is selling their wares, having deals, etc. And I can't compete with Black Friday sales at the retail stores. So, that lesson learned. Also, tooo many fundraising events is toooo much for friends and families. They don't want to say no, but they can't keep participating. So, spreading out my fundraising events would be more practical for us all! I think I will do one in March, one in June, one in September, and one in late November. So, once every three months (idea given to me by my wonderful friend and cleaning lady, Melissa - thank you!).
Thursday, October 13, 2011
A Successful National Microcephaly Awareness Day!!! 2011 ROCKED
I want to thank our supporters this year.
http://www.facebook.com/event.php?eid=247333261966131
Check out the link above. It is the invite I did for the NMADay this year and we reached over 2,600 people on FB. Very excited! So, far my Fundraising is going well. I had an on-line Silpada (Sterling Silver) Jewelry party for a couple of weeks. The profits ended up being $168. That total was sent to the Foundation for Children with Microcephaly by my wonderful friend and consultant, Cathy! She donated alllll of her profits to our cause.
Currently, I am having a Scentsy (wickless candles) on-line party and hope do to as well if not better than my other party.
Look for the Tastefully Simple party that will start at the end of the month of October.
Those that showed their support also did so by wearing yellow. See some pretty yellow pics below:
On that day, I also had a personal party to honor the Microcephaly angels and Ella and her on-line Micro. friends, who live everyday with the challenges of Microcephaly. Below are some pics of my family and friends' celebration:
http://www.facebook.com/event.php?eid=247333261966131
Check out the link above. It is the invite I did for the NMADay this year and we reached over 2,600 people on FB. Very excited! So, far my Fundraising is going well. I had an on-line Silpada (Sterling Silver) Jewelry party for a couple of weeks. The profits ended up being $168. That total was sent to the Foundation for Children with Microcephaly by my wonderful friend and consultant, Cathy! She donated alllll of her profits to our cause.
Currently, I am having a Scentsy (wickless candles) on-line party and hope do to as well if not better than my other party.
Look for the Tastefully Simple party that will start at the end of the month of October.
Those that showed their support also did so by wearing yellow. See some pretty yellow pics below:
On that day, I also had a personal party to honor the Microcephaly angels and Ella and her on-line Micro. friends, who live everyday with the challenges of Microcephaly. Below are some pics of my family and friends' celebration:
Saturday, August 27, 2011
National Microcephaly Awareness Day is Around the Corner!
Once again this year, Heather's Heart-Made Gifts is spreading awareness and raising funds for the Foundation for Children with Microcephaly for the up and coming National Microcephaly Awareness Day! September 30th, 2011 is the day to remember the lives that have ended in some way due to Microcephaly and to honor those that live with it everyday! My daughter, Ella Hope is one who is living despite Microcephaly. On this day me and many others are wearing yellow to remember and honor. Please join us in doing so.
Heather's Heart-Made Gifts will donate 10% of proceeds from any baskets, cards or scrap-books created or made for you from September 1st through the 30th. Also, Heather's Heart-Made Gifts will be making a temporary necklace line for the month of September. Get yours soon. More information to come on this necklace. Look for a picture and what else you can get with it. The necklace will be $5. It will most likely have a pendant in the shape of a yellow ribbon and yellow beads. This will be the perfect necklace to add to your yellow ensemble for NMA Day!
Heather's Heart-Made Gifts will donate 10% of proceeds from any baskets, cards or scrap-books created or made for you from September 1st through the 30th. Also, Heather's Heart-Made Gifts will be making a temporary necklace line for the month of September. Get yours soon. More information to come on this necklace. Look for a picture and what else you can get with it. The necklace will be $5. It will most likely have a pendant in the shape of a yellow ribbon and yellow beads. This will be the perfect necklace to add to your yellow ensemble for NMA Day!
CHHHHhhhhanges.....
~This Summer ~
With two events that didn't accrue as much money for the Foundation for Children with Microcephaly as I had hoped, I have made a decision to mainly just make this an order only business. I have some samples in stock, but if you want cards or baskets, please order. A new kind of basket that I am now doing is a wine basket. I made some up for a benefit Heather's Heart -Made Gifts and may other local companies, vendors and some national chain stores sponsored for Maddie Smith (baby girl of my friend Beth, who had cancer). I made them up with the help of the ladies from Wine Night in Harford County, who donated wine and other items. The baskets were donated to the Silent Auction that we had at the actual event at Mountain Branch Golf Course. See the flyer to the right and the basket below.
~I Not Only Will Creaet Baskets for You; I Will Create a Custom Scrap-book for You! ~
A new development is that I will also make your scrap-book for you! I love scrap-booking and would be happy to create a wonderful memory book for you. Pricing will depend on how big the book is and how many picture and embellishments you want. If I have to develop the pictures and purchase the book and embellishments, a large book will cost $75, including the time it takes for me to put it together. Without developing (you provide me with already developed pictures) a large book will cost approximately $45 - 50. If you already have the supplies and pictures you can save A LOT of money. I will charge $5 an hour. On average it takes me around 4 hours to create a nice scrap-book, so the cost to you will only be $20 +. Other options are available upon request.
With two events that didn't accrue as much money for the Foundation for Children with Microcephaly as I had hoped, I have made a decision to mainly just make this an order only business. I have some samples in stock, but if you want cards or baskets, please order. A new kind of basket that I am now doing is a wine basket. I made some up for a benefit Heather's Heart -Made Gifts and may other local companies, vendors and some national chain stores sponsored for Maddie Smith (baby girl of my friend Beth, who had cancer). I made them up with the help of the ladies from Wine Night in Harford County, who donated wine and other items. The baskets were donated to the Silent Auction that we had at the actual event at Mountain Branch Golf Course. See the flyer to the right and the basket below.
~I Not Only Will Creaet Baskets for You; I Will Create a Custom Scrap-book for You! ~
A new development is that I will also make your scrap-book for you! I love scrap-booking and would be happy to create a wonderful memory book for you. Pricing will depend on how big the book is and how many picture and embellishments you want. If I have to develop the pictures and purchase the book and embellishments, a large book will cost $75, including the time it takes for me to put it together. Without developing (you provide me with already developed pictures) a large book will cost approximately $45 - 50. If you already have the supplies and pictures you can save A LOT of money. I will charge $5 an hour. On average it takes me around 4 hours to create a nice scrap-book, so the cost to you will only be $20 +. Other options are available upon request.
Thursday, March 24, 2011
New Products Available for Spring 2011
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| Sesame Street Basket |
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| Birthday Bash Basket |
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| On the go Baby Basket |
Some really cute baskets have been created for you to purchase RIGHT NOW! All of the above are very reasonable in price.
The Sesame Street Basket ~ (ages + 3) ~ Inside this green see-through basket is an assortment of cute and colorful Sesame Street items, including a Coloring and Activity book with stickers, and big triangle crayons. There is a book about Grover, a note pad and a Cookie Monster stamper. This cute and fun basket can be yours for $9.00. If you want it gift wrapped it will cost $10.
Birthday Bash Basket ~ This is filled with beautiful spring colors, but it would be great for any tween, teen, or adult lady. Cute Happy Birthday sunglasses, Vanilla hand lotion and a neat fizzy birthday cake (not edible) for your bubble bath! This one is yours for $16.
On the Go Baby Basket ~ This includes a small pack of wipes, powder, baby lotion, shampoo, and Destyn. Great for a trip with baby. $10. This can be bought all year round, but the colors and little chick on front mesh with the Spring and Easter theme as well.
Friday, March 18, 2011
More Info. About the Arts, Crafts Show!
Silent Auction Notes:
- We have the three items pictured in the post below: The ornament, the Cuddle Cloth, and the Ice Cream Blanket.
- I will be donating a pre-made scrap-book with a starting bid of $25. It will be a Year in a Life, which will include monthly pages from January - December as well as all of the main holidays. (a picture will be put up as soon as it is completed)
- My father will be donating a landscape photo probably worth $30 dollars, so the starting bid will be $30.
- My mother will be donating a watercolor picture with a starting bid of $25.
- Each silent auction item will have a paper attached to it with the bids from each person. You can write your name, phone number and address (if you live far away) and you can keep checking in at the table at the auction. *** If you will be participating on line, me or someone else will keep my on-line auction people updated every 30 minutes, so you will know if you are being out-bid on an item that you wanted.
- The auction will end at 4:45 and the WINNER will be announced at the Show at 5 pm as well as on-line!
A Very Special Donation and Fundraiser table is being added to the Craft Show~ In Honor of Maddie Smith~
The story is in the above link. Yet, to summarize. The beautiful 8 month old, Maddie Smith, had a large tumor and her kidney removed in early March of this year. She has had another surgery to fix some complications caused by the previous surgery very recently and has been at Johns Hopkins Hospital off on for most of this month (March), so needless to say the Smith family is just reeling from this. They need help with the hospital bills. So, any profits made at this new table will go their family.
Wednesday, March 9, 2011
Microcephaly Awareness Arts, Crafts and Vendors Show
It is official the date, time, venue and many of the Crafters, Artists, and Vendors have been selected for Heather's Heart - Made Gift's FIRST ANNUAL:
Why? ~ To raise funds for the Foundation for Children with Microcephaly http://www.childrenwithmicro.org/, as well as Awareness. Heather from Heather's Heart - Made Gifts has a young daughter with Microcephaly (means small head, which is neurological disorder).
Heather's Heart-Made Gifts (featuring baskets, cards, and scrap-book pages)
Rich Sklar (wooden pieces like banks and mobiles)
Jackie Sklar (hand-made dish clothes and baby blankets)
Laura Tuttle (decoupage boxes and tiny water-color pictures)
Robert Tuttle (photography)
Tastefully Simple
Thirty One Gifts (bags, purses, cards, stationary featuring stylish monograms)
Celia Special Critters (felt animal creations)
Door Prizes will be given out every hour ~ First ticket is free, each door prize chance ticket will be a small donation of $2. : )
Silent Auction will be held for some very nice products. See pictures below:

~ Microcephaly Awareness Arts, Crafts, and Vendors Show ~
When: April 30th, 2011
Time: 12 noon to 5:00 pm
Where: Faith Orthodox Presbyterian Church ~ 405 N. Market St, Fawn Grove, PA
What: Businesses, Individuals and Vendors that will be there or represented:
Heather's Heart-Made Gifts (featuring baskets, cards, and scrap-book pages)
Rich Sklar (wooden pieces like banks and mobiles)
Jackie Sklar (hand-made dish clothes and baby blankets)
Laura Tuttle (decoupage boxes and tiny water-color pictures)
Robert Tuttle (photography)
Tastefully Simple
Thirty One Gifts (bags, purses, cards, stationary featuring stylish monograms)
Celia Special Critters (felt animal creations)
Door Prizes will be given out every hour ~ First ticket is free, each door prize chance ticket will be a small donation of $2. : )
Silent Auction will be held for some very nice products. See pictures below:


Cuddle Cloth for Tub Time Ice Cream Quilt Blue, White, Ornament
Springing into Sale ~ New Products Available for Sale Now!


The Spring collection is starting to be created now. The two baskets above are available for cash and carry now or at the craft show in April.
The top basket is called "Home / Office Cherry Blossoms". It includes a pen, note pad, sticky notes, decorative paper clips, 10 pencil pack, and magnetic clips. This is $10.
The bottom basket is called "Home / Office Spring Floral". This one is larger the first and includes a pen, magnets, small clip board, magnetic list pad, 10 pencil pack, sticky pad, mini note book,and memo cube. This one cost $14.00.
Friday, January 28, 2011
Small Tins of Love Made for the Lovely Ladies in Your Life

Above is the "Stay Warm Inside and Out" Tin,which includes warm black gloves, pink socks, and four tea packs. $10 is the lovely low price. NO LONGER AVAILABLE!

"Unique Love Gifts" Tin is the name of the above penguin tin. It includes a little book called Advice from a Tree a "love" plaque and Wild Berry hand lotion. Cost to you is $20. GIVEN AS GIFT TO A FRIEND.

The "Take - Along" Tin is a grouping of items that fit perfectly into a purse: Fancy ribbon & heart pen, 2011 - 2012 Planner, chapstick, key-chain camera, body lotion, hand lotion, sticky notes, and gum. OR take the whole tin to work with you and have items you may want or need during your busy day. $18 is the cost to you. THIS ONE WILL BE AVAILABLE SOON WITH CHANGES!
Baby Girl and Toddler Girl Baskets

Above is the "Sweet Pea Love" Basket. This can be given to a Mom-To-Be or a New Mommy and her little baby girl anytime during the year, but it has pink and red, which is perfect for Valentine's Day, too. The basket is pretty with multi-colored stripes and a purple ribbon handle. Inside there is an entire outfit to dress that adorable baby girl from head to foot: Pink romper with Strawberries and Daises on it, three baby head-bands to match and little booty socks with "I love Daddy" on them. Also is a cute book called Eat Your Peas for New Moms. The cost of this basket is $28 and comes with a free card ($2 value). STILL AVAILABLE! CLEARANCE $26.00

The basket above is rectangular with Love and hearts and bird cages. It is called "Build Your Love" Basket. Inside includes a small Winnie the Pooh Favorite Colors block book and blocks with Valentine words, a cute plush elephant holding a heart, milk chocolate heart candies, toddler heart socks. This one cost $12.00. NO LONGER AVAILABLE!!!!
Tuesday, January 25, 2011
NEW ~ Kitchen Kits ~ Bake up Some Yummies for Your Sweetie

"Love, Hug and Bake" Bowel is sooo much fun! It includes a pot holder glove with cute cupcakes on it. It also includes a Betty Crocker Baking cook book, clear spatula with kisses on it, heart shaped ice tray, a "love, hug" dish towel, heart-shaped measuring cups, 2 heart shaped cookie cutters, and X & O cookie cutters. This one comes in a HEART shaped bowel. It cost $18.

This one is delicious! It is called "Cook up some Love". It can be for a little girl who is helping Mommy bake for V.Day or any day or her Mommy. Inside~ Heart shaped ice tray, cupcake shaped pot holder, 2 cookie cutters, a pink spatula, and a dish towel with pink polk-a-dots. It also includes heart shaped measuring spoons. This one is in a rectangular basket with muti-colored stripes. It cost $12
Tuesday, September 28, 2010
Cards, Baskets, Scrap-Book Pages, OH MY!!!
I mainly make cards and baskets as of now. Yet, I would love to make Scrap-book pages (with or without pictures)as well. I will be adding book marks, wooden picture frames, and wooden saying signs soon.
CARDS:
I use the scrap-book method of card making, which means, I use A LOT of stickers and embellishments to create a home-made look. I can hand letter or use stickers to create sayings for the inside and/or outside. I will do what YOU WANT ME TO DO! : ) You are in the driver's seat, so to speak! The ones above are samples of a few of the styles, and types I make. Everyone is made with love on durable card stock. I sell individual or in gift sets of 5, 10, and 20. Prices depend on size of the cards and amount of embellishments you want on it. The two above were part of a variety pack of 5 cards, which sold for $10.
I use the scrap-book method of card making, which means, I use A LOT of stickers and embellishments to create a home-made look. I can hand letter or use stickers to create sayings for the inside and/or outside. I will do what YOU WANT ME TO DO! : ) You are in the driver's seat, so to speak! The ones above are samples of a few of the styles, and types I make. Everyone is made with love on durable card stock. I sell individual or in gift sets of 5, 10, and 20. Prices depend on size of the cards and amount of embellishments you want on it. The two above were part of a variety pack of 5 cards, which sold for $10.
BASKETS:
THIS ONE IS ON CLEARANCE FOR $20 WITH A CARD INCLUDED FOR FREE!!

Above are two of my baskets; both are currently for sale.
The one on the top is called Perfectly Perfect Pal Pack, which includes a Boyd's Bear Crayola Purple Plush, a 12 pack of Crayola Crayons, Purple Play-Dough, a pen that looks like a flower. This $15 tin of colorful fun would be a great gift for a little girl or a lady who is young at heart <3. NO LONGER AVAILABLE!!!>
The basket on the bottom is called Perfectly Pink Baby Shower Basket. This $30 Golden hued basket includes Tissue paper, White with purple polka-dotted receiving blanket, size 3 month Summer Romper, baby doll, travel pack of essential (Baby Bee Dusting Powder, Cetaphil, Travel Johnson's baby shampoo, Doctor Burt's Orange Creme Toothpaste, Cool baby toothbrush), Binky Wipes, Beautiful 6 month old dress stuffed with tissue paper (paper can be substituted with baby bibs, diapers, etc..... for $5 - $15 extra dollars).Topping it off is pink streamers lovingly held on the handle by an adorable assortment of bows for one's little girl to be.
Friday, August 27, 2010
The Reasons I Started Heather's Heart-Made Gifts
Of course, the MAIN reason that I started this mini-business is because of Ella, my one year old, who has Microcephaly (see below for her story). Yet the other reasons are to raise awareness about Microcephaly (small brain due a root cause, which for many families is never discovered) and to raise money for the Foundation for Children with Microcephaly.
http://www.childrenwithmicro.org/
Ella's Journey with Microcephaly~ Written by Me ~ Heather Leigh Tuttle Sklar

It is really hard to put Ella's journey in a cliff notes form, but I will try. It all started before she was born. She was thought to NOT have her Corpus Collusum (connectors that join the left and right hemispheres of the brain) for about 3 weeks. We had some any tests prenatally, mostly second stage ultrasounds. After they "found" her Corpus Collusum, they noticed that her brain ventricles were on the large size of normal and we continued monitoring her ventricle growth prenatally.
So, when she was born, we continued to look into the larger than normal ventricles. Her (former) pediatrician referred us to a Hopkins to see a Neurosurgeon, because large ventricles can indicate ventricular-megaly and/or hydro-cephaly, and can be helped through surgery. Everyone was pleased with her head size, because it was NOT abnormally large, which is indicative of the two neurological disorders that she was being monitored for.
Yet, for the first 6 months of her life, no one mentioned that her head size was not only small for a child with hydro-cephaly, but for a child her age. Also, she was developing fairly normally for the first 3 and 1/2 months. Yet around that time, I was noticing that she was not tracking consistently, not reaching for me or objects and wasn't very mobile. Her development was at a stand still or was slowing down. I mentioned it to her Ped. at the time and she just sent me a paper of things to work on to help in development. For that reason, and other reasons, I started searching for a new pediatrician for Ella (and Rylee).
At around Ella's 5th month, I found Dr. Wax and went in for an interview; he was amazing and saw her eczema and diagnosed her by sight as having a milk allergy. We went to Ella's 6th month well baby visit at his office and our world was crushed by Microcephaly, which is the EXACT opposite of what her former ped and neurosurgeon were monitoring. Micro means small and cephaly means head. Dr. Wax looked blind-sighted by his discovery and was AMAZED that no one had diagnosed her for 6 months, because when he looked at her chart it showed that she had the disorder at birth.
So, we had a crash course through Dr. Wax and the internet of what we could "expect" of Ella. Dr. W. also filled out a form that showed all of the blood tests that she would have to undergo and he said the quicker the better. : ( We started the quest of trying to find the under-lying cause of Ella's micro. by going back and forth to Quest Laboratories about 11 times. They can only take about 10 ml of blood from a baby of 6 months.
In the midst, of all of this blood-work (not because of the blood work), Ella developed Infantile Spasms, where she would just go stiff and almost fall backwards. I described this to Dr. W and he said she probably had Infantile Spasms (constantly chaotic brain waves that when stressed causes one spasm or a series of spasms called a cluster). She had her first EEG in January of 2010 and the Epilepsy doctor on - call (Dr. Hartman) called us that very day, hoping that we could check in to the hospital that night. That wasn't possible, so we checked in the very next morning. She was in the hospital for three days and they put her on a steroid to "treat" her spasms.
The steroid took all of Ella's infamous "fight" away and she was a porky little lump for about a month and 1/2. Her personality was taken away. Dr. Hartman and Dr. Kelley have switched her meds. many times and finally Ella is on Vigabatrin, which has done away with her IS.
Meanwhile, Ella has shown her beauty, courage, and grace and answered all of our prayers by making many strides in her development, some of which was stripped from her when she started having the spasms and on the steroid. We have acquired a large team of therapists and doctors, who have lovingly helped her and us through the discovery stage of Microcephaly. She is a fighter, my mini-hero, and an amazing child. I am blessed to have her and want to travel this journey with her for many moments. We still have no diagnosis of what caused her micro. and no prognosis. Yet, many things have been ruled out. I live in the moment and love every moment that I have with her.
No expectations, just hope and prayer and love.
http://www.childrenwithmicro.org/
Ella's Journey with Microcephaly~ Written by Me ~ Heather Leigh Tuttle Sklar

It is really hard to put Ella's journey in a cliff notes form, but I will try. It all started before she was born. She was thought to NOT have her Corpus Collusum (connectors that join the left and right hemispheres of the brain) for about 3 weeks. We had some any tests prenatally, mostly second stage ultrasounds. After they "found" her Corpus Collusum, they noticed that her brain ventricles were on the large size of normal and we continued monitoring her ventricle growth prenatally.
So, when she was born, we continued to look into the larger than normal ventricles. Her (former) pediatrician referred us to a Hopkins to see a Neurosurgeon, because large ventricles can indicate ventricular-megaly and/or hydro-cephaly, and can be helped through surgery. Everyone was pleased with her head size, because it was NOT abnormally large, which is indicative of the two neurological disorders that she was being monitored for.
Yet, for the first 6 months of her life, no one mentioned that her head size was not only small for a child with hydro-cephaly, but for a child her age. Also, she was developing fairly normally for the first 3 and 1/2 months. Yet around that time, I was noticing that she was not tracking consistently, not reaching for me or objects and wasn't very mobile. Her development was at a stand still or was slowing down. I mentioned it to her Ped. at the time and she just sent me a paper of things to work on to help in development. For that reason, and other reasons, I started searching for a new pediatrician for Ella (and Rylee).
At around Ella's 5th month, I found Dr. Wax and went in for an interview; he was amazing and saw her eczema and diagnosed her by sight as having a milk allergy. We went to Ella's 6th month well baby visit at his office and our world was crushed by Microcephaly, which is the EXACT opposite of what her former ped and neurosurgeon were monitoring. Micro means small and cephaly means head. Dr. Wax looked blind-sighted by his discovery and was AMAZED that no one had diagnosed her for 6 months, because when he looked at her chart it showed that she had the disorder at birth.
So, we had a crash course through Dr. Wax and the internet of what we could "expect" of Ella. Dr. W. also filled out a form that showed all of the blood tests that she would have to undergo and he said the quicker the better. : ( We started the quest of trying to find the under-lying cause of Ella's micro. by going back and forth to Quest Laboratories about 11 times. They can only take about 10 ml of blood from a baby of 6 months.
In the midst, of all of this blood-work (not because of the blood work), Ella developed Infantile Spasms, where she would just go stiff and almost fall backwards. I described this to Dr. W and he said she probably had Infantile Spasms (constantly chaotic brain waves that when stressed causes one spasm or a series of spasms called a cluster). She had her first EEG in January of 2010 and the Epilepsy doctor on - call (Dr. Hartman) called us that very day, hoping that we could check in to the hospital that night. That wasn't possible, so we checked in the very next morning. She was in the hospital for three days and they put her on a steroid to "treat" her spasms.
The steroid took all of Ella's infamous "fight" away and she was a porky little lump for about a month and 1/2. Her personality was taken away. Dr. Hartman and Dr. Kelley have switched her meds. many times and finally Ella is on Vigabatrin, which has done away with her IS.
Meanwhile, Ella has shown her beauty, courage, and grace and answered all of our prayers by making many strides in her development, some of which was stripped from her when she started having the spasms and on the steroid. We have acquired a large team of therapists and doctors, who have lovingly helped her and us through the discovery stage of Microcephaly. She is a fighter, my mini-hero, and an amazing child. I am blessed to have her and want to travel this journey with her for many moments. We still have no diagnosis of what caused her micro. and no prognosis. Yet, many things have been ruled out. I live in the moment and love every moment that I have with her.
No expectations, just hope and prayer and love.
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