Carissa T.

Texas

Birth Date - Augusta 8 2007

Main Diagnosis -  Autoimmune Disorder

THEME:   Princesses

Carissa's Story

At birth Carissa was a deep dark purple, but they said she was fine. She spent extra time under the warming lights because they couldn't get her body temp to stay up. She stayed in the hospital an extra day because she was a high birthweight baby, had the trouble warming up, and had mild hypoglycemia, but they still said she was fine.

At two weeks old she had gone in for a well check and had a fever, but it wasn't a true fever. I told the nurse that she does that just take her clothes off and let her cool down for a minute and she'll be fine. They did and she was. It should have been our first hint that something was wrong, but we thought it was just because she was a newborn. Then at 4 weeks old she developed a pattern of every other day vomiting. We thought she had reflux so doc put her on meds for that.

At exactly five weeks old is when we KNEW something was wrong. Our sweet, breastfed baby had slept through the night. When we went to get her out of her bed she was ragdoll limp and virtually unresponsive. She spent a month in the hospital on an NJ tube as she was found to be silently aspirating. She was misdiagnosed, treated, and released for infant botulism and sent home on meds and an NG tube.

Over the years she has morphed. Some things go away, but then a new one takes it's place or things just plain morph. We've had no luck in getting a diagnosis, but have found a few medications to help some of her symptoms. We were recently told that they no longer believe she will ever outgrow this, and they aren't sure if they will ever even figure out what it is.

Carissa has been through multiple tests and the typical results are an abnormal abnormal-meaning it's definitely not a normal result, but it's nothing they've ever seen before! We know she has a few duplicated genes on her Chromosome Xp 22.31, but because her daddy was found to have the same duplication they said it's not the answer to or cause of her problems.

We have to closely watch her temperature because it drops or raises according to her environment. She has a cooling vest and freezer bears that we use to keep her cool or cool her down when she gets too hot,but when she gets too cold we have to warm her with blankets from the dryer, adding clothes, body heat from snuggling, and putting warm fluids through her gtube. It makes travel difficult, but we work around it. It is very limiting for Carissa though as she can't participate in most outdoor activities or anything that will affect her temperature such as playing outdoors unless the weather is very mild. Weather changes also tend to make things flare up for her even when she doesn't go out in it.

Due to her GI issues she is on multiple medications to have regular BMs and control her reflux as well as to help her stomach empty. She deals with distension and stomach pains or complains her stomach feels weird daily. She has bouts of cyclic vomiting from time to time, but seems much better controlled now. Her biggest issues lately are memory and migraines. She typically has at least two migraines a week, but often times more often and sometimes daily. It's a rough life for a little kid, but somehow she still manages to be one of the sweetest people I've ever known.

Carissa's name means loving and she surely lives up to her name! She's always thinking of others and putting them first. She freely gives of whatever she has and is always giving hugs, smiles, and compliments. Anything to make people feel better.

Cognitively she is very smart. Her delays are more physical and she is in speech, physical, and occupational therapies. Recently her memory issues have been more pronounced and seem to be worse and effecting her educational development though-such as forgetting her letters or how to count. So far it seems she eventually regains what she loses, but each time it seems to take longer and longer for everything to come back. The doctors are baffled and can't find a cause or reason so they don't know what to tell us.

Honestly I could write a book about it all if it weren't for the fact that I have no time to do so! I hope I've given you a good enough idea of who Carissa is and that combined with looking over her CB site that you will be able to make a decision.Currently we are fighting for insurance approval and arrangements to be made her to have whole exome and mitochondrial testing that the doctors have said she needs. Everything for Carissa has been a fight from the beginning of this. Hopefully one day they will figure things out and then people can learn from her or it can help someone else. At least then her suffering won't be completely pointless

We just try and live each day to the fullest and the best we can all the while praying God will provide answers somewhere and hopefully a cure or better treatments. Thank you so much for what you do, and for considering Carissa. A quilt would be so helpful for her when her temperature drops too low, and maybe seeing something she likes on it she wouldn't fight being warmed back up so much-when her temperature drops really low she gets combative, says she is hot, and fights being warmed.

"THANK YOU".

Here's a pic of Carissa with her Love Quilt. She went absolutely crazy when she saw it:-) She loves it so much that even though its so big she's taking it everywhere and showing it off to drs, nurses, strangers etc!  Carissa's favorite  is Rapunzel.

She likes all of the squares and thought it was really cool that they are all signed and came from so many different places.

Her quilt came at the perfect time because she hasn't been feeling well and has been dealing with a lot. Nothing major, but to a six year old everything is major!

Thanks to everyone that worked so hard on this quilt. It means the world to us

and has really touched our hearts! Thank you so much!

Michelle and Carissa