Inspiration

Talk about inspiration. Marissa has been doing great. Dr. Mancuso wants her to keep active. With that said...She started 6th grade this year and is looking forward in being in athletics in 7th grade. She LOVES basketball and is ready to play for her school! This week they have been doing different drills to weed out the girls interested in athletics and the girls who just want to be in dance and PE. We'll the little girl they said wouldn't and couldn't DID! She ran 1 mile on Tuesday non stop...the coach stated if they stopped their name would be crossed out. As she ran she knew she was in last place so she pushed and pushed herself to cross the finish line. She was determined to finish! Her legs being so tiny and fragile were in so much pain that night to the point we had to soak her in warm water. I told her if she could not physically finish I would still be proud of her because she has come a long way and that her coach and I understood. She looked at me and said "I can't quit mom I have to finish". She is such an inspiration to me. What do I have to complain about? Here my daughter who has faced so much in her young life says there is no option to quit. I saw her coach at a basketball game and needless to say she has been very impressed with Marissa. "That liitle girl has so much heart...WOW"

Post Surgery

It's been a while since I have updated and I wanted to write about Marissa's progress. Last I wrote about our visit to see dr. mancuso. Turns out thr blood flow to Marissa's brain was great so she did not need brain surgery!! She had the spinal cord surgery to correct the tethered cord in 07/2007. So the morning of the surgery I got Marissa ready as I always do. We did our "morning of surgery" ritual. Jamming out to Fergie's Big Girls Don't Cry. I have used this song to help her out of the most painful situations. As she is getting an IV put in or going through a procedure she knows is going to hurt or she is just scared we whisper this song to each other. So that morning we were looking into a 9+ hour surgery. When doctors tell you worse case scenerio it's so scary because that's your baby. Well Dr. Mancuso was amazing to say the least. She came out after an hour and a half and said "we're done". My jaw dropped and I said "but you...said". Dr. Mancuso looked a bit confused as to what had just happened in the surgery room. She said " I know what I said but everything I said forget about it". She continued " I went in and started cutting the fatty tissue near her spine and as I was about to cut more her spine rolled into place and startd pulsating on it's own". I looked at her confused. All these thought were running through my head what had just happened that this doctor just stopped. "Something is just telling me that I need to leave this little girl alone" she said. At that noment all I can think of is praise God! I know he was in that surgery room. I left my daughter in the only place I trust to leave her. And that is in God's hands! From a 50/50 chance on ever walking again Marissa continued to beat the odds and walked after 2 1/2 days. She's a fighter!

Doctors Appointment

Tommorrow is Marissa's Dr.'s Appointment. We will be seeing Dr. Patricia Mancuso in San Antonio, TX. She will let us know whether Marissa will be having the brain surgery to correct the Chiari Malformation. Or she may just have to have the spinal cord surgery to correct the Tethered Cord. Or she may have both.

Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. (Prov 3.5-6)

Marissa Monae Ledesma

I know there are a lot of you who know my daughter Marissa. There are some of you who have yet to meet her. Marissa Monae was born January 1st 1998. The day that changed my life forever. I share this story with you because I truly believe that my daughters purpose in this life is to let it be known God works great miracles. Marissa Monae was diagnosed with Cloacal Exstrophy and doctors had prepared me for the worse. Marissa was supposed to be as they say "still born"and weigh "3lbs 3oz". As they rolled her away from me to stabilize her she let out a cry that echoed through the hallway. Waiting to see her doctors told me and her father that it was ten times worse than what they thought. When we got up to see her she turned her head and looked at me with these big brown eyes. Leaving her at the hospital was the hardest thing I had to do. I can remember her Dr. telling me "enjoy the time you have with her because these children usually don't live past one". On her 1st birthday it was an emotional one for my family and I and has been for every one after. The little girl that doctors said would not walk, run, skip, jump, play or live has by the grace of God. Marissa not only walked but she enjoys tap and ballet, baseball, gymnastics and not to mention her love for basketball. This all changed around her birthday January 2006. She was in so much pain that she could not even get out of bed. What we both went through and saw those months I would not wish on any mother. She had surgery August of 2006 to remove two stones from her bladder. After recovery I thought all would be well and we would live our lives as we did before. I knew since birth that Marissa's case was going to be a life long journey that would consist of more surgeries. But I didn't think this soon. I took Marissa into the hospital for pain as well as high fever. thinking it was just another UTI. I was told by doctors that not only did she have a UTI but developed a severe kidney infection. She had temperatures reading at 105.1!! Any mother out there as I was would be going crazy thinking what is going on with my child. Nurses exchanged thermometers and paged doctors. Doctors rushed in the room only to see this little girl playing video games and asking for more Gatorade saying "I feel fine". I had a doctor visit. She was there to tell me they had found in an MRI that Marissa has whats called a Tethered Cord and Chiari Malformation. From what I've read it's where your spinal cord somehow attaches to the skin on your back and as you grow it stretches downward causing your brain to sag. Now at this point I can't believe what I'm hearing. They start to examine her and find that its so severe at this stage that she has already lost reflex in her legs. Doctors are saying she needs Spinal cord surgery and brain surgery. They say that there is a chance that "she may not walk again". As here mother I can do one of two things break down and cry or be strong and stand by her side and fight with her. I've always taught Marissa to be strong and independent. She is my strength in all I do. I ask you to pray for Marissa and my family. God is good. I don't see this as Why me Why us type of things don't get me wrong I used to. Everyone needs to realize God is making miracles in our lives everyday. He never leaves our side. You don't go through things just because its for a reason. Reason being to bring you closer to him. He loves you!

Our purpose for sharing our story is in hopes of others gaining strength through Christ.

Erica Ledesma