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Support Baby Ellee

$2,010 of $6,000 goal

Raised by 32 people in 19 months
Created January 12, 2018
Believe it or not this entire ordeal started with a tiny skin tag on Ellee’s cute little tush. On the day she was born the nurse noticed it and told us to mention it to our pediatrician on her two day visit and that they would just snip it off. No one thought a thing about it as we had a seamless pregnancy and birth and Ellee was perfect in every way! At our pediatrician appointment we mentioned the skin tag and our doctor looked at it and became concerned. She said often times dimples or skin tags can be a sign of spinal issues. She had a meeting with the other pediatricians and they decided that she most likely had a tethered spinal cord. (For those of you that may not know, in a normal person, your spinal cord dangles in your spinal canal and as you grow it grows with you. For some reason, Ellee’s spinal cord is attached to the bottom of her spinal canal, so as she grows it is actually stretching like a rubber band and and pulling on a bunch of very sensitive nerves.) Cory and I were horrified! As a brand new mom I was already so emotional I could hardly keep my head up right. I started googling, reading and researching, of course, and was so scared for our little girl! If not treated by surgery there could be issues like not being able to control or feel when you have to go to the bathroom, leg numbness so you can’t walk correctly, all the way to extreme cases such as paralysis! At three weeks old Ellee had to have an ultrasound and MRI on her skin tag and back. we got various answers from everyone and the neurologist doctor we saw actually told us that ‘all three weeks old baby’s backs look like that on an MRI’ and not to worry. He said that we wouldn’t assess the issue again unless she started showing symptoms most likely around age four or five. He also got after me for googling symptoms and signs and laughed at me when I asked him if the reason Ellee had a fuzzy patch of hair above her butt was a symptom of a tethered spinal cord. He said all babies can be fuzzy there and that was normal. Cory and I were ecstatic but thought it best to get a second opinion since our pediatrician still thought something was not right. After that we scheduled an appointment with a traveling pediatric doctor for Montana. We had to wait SIX MONTHS for this appointment and the first thing he said to us when we walked in the room with little Ellee was ‘I’m not quite sure why they sent you here to me I am the complete wrong doctor for this’. We were furious, however he looked over Ellee’s MRI and gave her a physical check up and thought she looked ok. He told us that eventually if we wanted definite answers that we should think about going to the professionals in this field at Seattle children’s. Cory and I went back and forth but something just didn’t sit right with us an ultimately we decided that even after multiple doctors told us she was ok, that we would still go to Seattle for a third opinion! We packed up both kids and drove 10+hours to Seattle in October. We decided to make a vacation out of it so our son would have a good time and we did! Besides the doctors appointment it was a nice getaway, however, the doctor did confirm that Ellee definitely had a tethered spinal cord. He had never looked at her MRI scans until that moment we were in the room together and within 30 second of looking at her scans (which were the same scans from when she was 3 weeks old) he said there were MULTIPLE SIGNS that she needed surgery right away. He also assessed her skin tag and mentioned that her little patch of peach fuzz above her butt was a definite sign as she isn’t hairy anywhere else! We were devastated by the news but so happy we got the answers that we needed in time!! The doctor scheduled her surgery for February 22, 2018. He wanted to wait until she was at least a year old since anesthesia is hard on a little developing brain but wanted to do it before she was a year and a half because they get too wild and hyper at that age that they don’t heal as well. Also, before she hit any of her big growing stages. If the surgery goes as planned they do not believe that she will have any nerve damage since we caught it so early!! There is however a big chance that the spinal cord will retether to the scar tissue from the surgery or potential spinal fluid leakage so there may have to be multiple surgeries within the future to make sure it stays untethered. We definitely have a long road ahead of us but are so happy and blessed from all the support we have received! Little Ellee Rose is such a blessing and beautiful happy little girl. You would never know anything was wrong with her spine if she didn’t have the skin tag. She’s super active and hitting every milestone and will be celebrating her first birthday next week! Please feel free to get in touch with me if you have any other questions about Ellee’s journey. We know our story is long and confusing. We are happy to share our story in the case that it will help others! Thank you for taking the time to read this. We love you all!
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Here’s another update!

Ellee had a very rough night last night. Her fever spiked over 100 and we just couldn’t seem to be able to keep her comfortable. Her IV got infiltrated so they removed it for now but they might have to restick her as we can’t seem to get her to drink anything and she hasn’t had any wet diapers. She is feeling better this morning though and her doctors said she can now sit up! She’s so happy she was getting restless!! We also got to see her incision and it’s very big. Looks like it should though and no signs of any infection or spinal fluid leakage so far. We were supposed to be able to leave the hospital tomorrow, but due to lack of wet diapers and her fever last night, we have a little ways to go and may have to stay longer. Hoping we can get this little lady hydrated without any more IVs!!
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Here’s an update from the family!!

Ellee had her first pre-op appointment today with the dermatologist. It was rough. She has developed a fear of the doctors office so she had a hard time. She was very scared even though nothing bad happened - just a look over of her skin tag. They would like to remove it during surgery but her doctor is worried about increased risk of infection. If they decide to not remove it on Thursday they will look into removing it when we come back in a few months for her follow-up. They plan on looking at her MRI she will have done on Thursday to make sure it is in fact just a skin tag and nothing more so we should know more then. Ellee has three appointments tomorrow so it will be a pretty traumatic day for her but we are still doing good!! Cory and I are holding strong for little Ellee but I can say, without a doubt, that nothing I have experienced in life so far has been harder than seeing your baby trembling scared and knowing what she has ahead of her...She sure did look cute headed to her appointment today though. #ElleeStrong
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Ellee is getting very close to her surgery date!!! This beautiful baby girl has to go through a difficult surgery in a little over a week. Please share and support this loving and caring family! Every donation and share means the world.
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I met Kenzie and Cory through mutual friends from work. In a very critical time they opened up their home to watch my kids for me until I could find alternate daycare. They are a very sweet family and now they have to go through a very critical surgery for Baby Ellee. Help me raise money for this loving family so we can support all those obnoxious deductibles, travel costs, food costs, and some extra time of work if needed!
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$2,010 of $6,000 goal

Raised by 32 people in 19 months
Created January 12, 2018
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KB
$100
kathy buckley
18 months ago
NF
$50
Neil & Dianne Fortier
18 months ago
SA
$50
Sarah Anderson
18 months ago
$20
Ashley Lopez
18 months ago
CG
$50
Cindy Golie
18 months ago
$20
Summer Michaelson-Morse
18 months ago
DG
$100
Dan & Lynnette Gliko
18 months ago
CK
$25
Courtney Kraemer
18 months ago
MB
$25
Marilyn Bomar
18 months ago
KG
$50
Ken Gardner
18 months ago
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