The Special Trio

Rachael has Hydrocephalus, Chromosome 15q11.2-13.1 Duplication , Asthma, Seizures and GERD. Chelsea h She weighed 4lbs. 8oz when she was born.

Rachael:
I got pregnant at 17yrs old me and my ex husband found out we was expecting on february 17, 2008. When i went to my 20 week ultrasound we found out that we were having a girl but not only did we find out it was a girl we also found out she had internal ventricular hydrocephalus. My due date was december 7, 2008 but the fluid built up too much in her brain and they had to do an emergency c

section on november 22, 2008. They took her straight to the nicu. She wasin there for 2 weeks so she got out on her original due date. She was diagnosed with gerd. We took her home on decmber 6, 2008. On january 14, 2009 she had a vp shunt put in to drain the fluid off her brain. After that she did just fine until april 15, 2012. Rachael woke up at 4am and she cried out one time and stopped crying. When i went to check on her she was blue and not breathing. Her food aspirated up and she couldnt breathe. So an ambulance came and got her the next day they dida nissen fundoplication which is where they wrap the top of her stomach around the bottom of her esaphlegus so she couldnt vomit anymore. We was in the hospital 6 days. On june 24, 2012 she had a prolonged seizure lasted 1 hour and 20mins. She was fine after that seizure. On december 28, 2012 she had a seizure that lasted 40mins. She went into cardiac arrest for 30mins during that seizure and it lead to a brain injury. She was unable to sit up, walk, talk and it eventually stopped her eating. I was pregnant at the time and i went to have my 3rd daughter on january 7, 2013 by c section while rachael was in the hospital. She got out of the hospital january 14, 2013. On february 5, 2013 her shunt came undone and she had it redone and we got out on february 7th. On february 13th she was running a fever when i took her to the dr. They sent us to the er to have her shunt checked and she had gotten staph infection in her shunt. They took the shunt out on february 15th, they sent us to picu with an evd(external venticular drain) to drain the infection out for 10 days. They put the new shunt in on february 25th and we got out on february 26th. She came home and she wasnt eating that great and when she did she threw up all the time. They put in a g tube on march 21st. At the same time my newest daughter was in the hospital with rsv. Rachael has a undiagnosis of why she has seizures. Chelsea:
I got pregnant on April 3, 2012 with Chelsea. I Had a little bit of a rough pregnancy. I was taking prometrium pills to keep my Prometrium level up. At my 20 weeks ultrasound they saw something in her head. They sent me to High Risk for it. It looked like a tear drop in the middle of her head. They sent me to have an MRI done on her while she was inside me. By the time I had the MRI that tear drop had went away. When we went to the next ultrasound it was gone. She is 20 months old right now and just now started crawling. We took her to neurology and they told me her soft spot is gone and the middle of her head is already closed up. They sent us to the hospital to have an X-Ray done of her skull and a lot of blood work. Her head X-ray and MRI was normal. We are currently waiting on Genetic test results. Please pray for her you can send her a card or gift as well. Chelsea recently got diagnosed with Lactose/Protein intolerance, 22q11.22q11.23 and microcephaly. We also have a sister named Katie that is 4yr old, but she is completely healthy and full of life. Nathan: Nathan has the same chromosome duplication as Chelsea. The chromosome 22q11.22q11.23 Duplication. He is very weak and cant sit up or crawl. If you want to send a card or gift to them please message me for the address.

10/01/2024

Keep praying for rachael. Her blood pressure is running real low when she sleeps and so is her body temperature. We are still currently in the ICU.

09/29/2024

Please keep the payers coming. Rachael blood pressure is low and her body temp is too low. She is sleeping and not waking up to much of anything. They got warming blankets on her to get her temp up. She is on 12 liters of oxygen.

09/28/2024

I am sorry I haven't updated in a while. Chelsea is slowly regressing into a wheelchair and getting put back on a feeding tube. I am currently sitting in ICU with rachael. She has rhinovirus, UTI and very high sodium levels. She is on 12 liters of oxygen to help her breath. Please pray for us.

06/26/2024

Been taking Chelsea to a lot of drs at Vanderbilt to figure some new things happening with her. A couple of months back she started losing strength in her legs if she stands too long she can’t walk that great. Been taking her to neurology and they are ordering her a wheelchair. She has been diagnosed with cerebral palsy level 2 and she has spasticity in her legs. We go to a geneticist in August to figure out what’s happening. They think her chromosome duplication is playing a role in her physical health deteriorating. They may end up doing a muscle test for muscle conditions. Please pray we get some answers.

11/30/2023

The kids have been doing good. Chelsea’s seizures are under control. Rachael’s respiratory issues have gotten too bad for her to go to school so she is homebound. I have had a couple of people to ask me about a cashapp to send the kids something for Christmas. I will post it here.

08/21/2023

So a little update on Chelsea. She done her EEG test and I got the phone call this morning from her dr about the results. Chelsea is having seizures so they are putting her on medicine for it. Please pray for my family as I am taking this a little hard since Rachael is in the shape she is in.

06/27/2023

So I know I haven’t updated on this page in a while and I apologize about that. Just got a call from summer school that Chelsea has 2 seizures today. She hasn’t ever had any until today.

12/30/2021

9yrs ago is when my life changed a lot. Rachael was talking, eating and walking at one time. On December 28, 2012 Rachael went into a seizure it lasted 30 mins and she wasn’t breathing the whole time. They put her on a ventilator tube in ICU and I didn’t know if she was going to make it or not. 10 days later I went to UT Hospital and had a C-Section to have Chelsea all while Rachael was still fighting to live. I am so lucky to still have her here with us. Unfortunately after all that happened and having Chelsea and having Nathan there dad left. I never knew the mom I could be until I didn’t have a choice to be the only parent. Now I have an amazing fiancé and parents that is there to help me.

Help Rachael get a van, organized by Heather Cole

10/22/2021

https://gofund.me/c813f056

Help Rachael get a van, organized by Heather Cole I have a 12yr old daughter that has cerebral palsy. She had a seizure on December 28,2012 and was … Heather Cole needs your support for Help Rachael get a van

10/12/2021

Please say some prayers for my family. My SUV decided to crap out on me and pour oil out of the engine. That was my only vehicle that was big enough to get Rachael in and out of along with her wheelchair.

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