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Welcome to My 6 Angels Web Page. This page is about, and in honor, of our 6 beautiful children Annette, Joshua, Trayvon, Marriela, Cody and Sergio. Annette is our 18 year old adopted daughter. She was born very prematurely and had a host of medical complications. She also has an immune deficiency called IGG SUBCLASS DEFICIENCY. She has been very sick in the past. She has developmental delays, physical difficulties, used to use a g-tube and is definately every bit a teenager! Joshua is our 12 year old homegrown child. He was diagnosed March 4, 1998 with an EPENDYMOBLASTOMA (brain tumor). He underwent 2 surgeries, 6 months of high dose chemo and a stem cell transplant, he then had 6 weeks of 3-D conformal radiation. He is now more than 10 years cancer free. Joshua still struggles with seizures, GI issues and hearing loss, but he is a loving, happy WWE lover! Trayvon is our adopted 9 year old son. He was born with HETEROTAXY SYNDROME. Heterotaxy syndrome consists of severe congenital heart defects, malrotation of his intestines and several other internal issues. He has undergone multiple surgeries including 3 open-heart, to correct his various conditions. Though he is a happy, robust little boy he continues to have significant heart related issues that may one day take us on the road to getting a heart transplant. He is also the owner of one powerful imagination and wants to be a Superhero! Marriela comes from Boston and is such a bundle of joy. She was an extreme preemie (26 weeks, 1lb 12oz) and spent her first 3 months of life on a ventilator. She has CHRONIC LUNG DISEASE and developmental delays. She is also the poster child for ADHD and we are working hard to teach her coping skills. She is the source great joy and yet keeps us on our toes constantly! Cody is our 3 year old homegrown son. He was born on 9/9/05 (despite the fact that we truly thought I was completely incapable of becoming pregnant again!). Cody didn't want to be left out of the fun so he was diagnosed with a neurogenic bladder and bowel. He has overcome a speech delay and is now a very happy and active little boy who NEVER slows down. And last but not least is the newest member of the gang, Sergio. Sergio was born at only 25 weeks and spent over 7 months in the NICU. He also has Chronic Lung Disease adn requires oxygen round the clock. He is blind in one eye, but can see wonderfully from the other. He takes all of his food through a g-tube, and has severe global developmental delays. Yet, despite all of his challenges, Sergio has a smile that can melt your heart, has a laugh that would lift any depression and a spirit of determination unlike any I've ever seen before.
All of our children inspire us, motivate us and bless us every day. WELCOME!!!!!
We ask you to PLEASE sign the GUEST BOOK so that we can tell the children who has seen their page. I love to see new names too :-) So take a moment and say hello!!
Journal
Friday, October 3, 2008 4:12 PM CDT Hi everyone,
It’s temporarily peaceful right now, as Sergio and Cody are napping and Marriela went with daddy to drop off a friend, while Tray and Joshua are upstairs playing video games and Nettie is still at Casey’s Place.
It’s been another busy week. . . nothing new. Sergio went to ENT today for his post op appointment and to have his vocal cords looked at with a small camera. We found that his vocal cords are, in fact working fantastic and the Dr. felt that his vocal quality was good, though limited to only one or two sounds. He feels that it may be a developmental issue and possibly due to his brain bleeds in the area of speech holding him back from speaking at this time. Maybe with time, this area will develop more and therefore he’ll be able to speak. But, until then, we have to work with another method to allow him to communicate with us. He’ll also have a Barium swallow to see if he has any issues managing food and liquids. Once we have that information, we’ll be able to move forward to introducing actual eating to him. Very cool.
Cody and I continue to have this respiratory crud, it’s been 3 weeks for both of us now. I took Cody to the pediatrician on Monday and he was found to just have an asthma flare due to a viral infection. But on Wednesday he was burning up. I tried to give him one more day to clear it, but by Thursday morning, he was having trouble with the fever coming down even with meds. So I took him to the Urgent care (see story below) where it was discovered via x-ray that he has a large pneumonia on his right side. So he’s on antibiotics which worked wonders and he’s been fever free since his first dose yesterday! I also started an antibiotic yesterday and feel much better already. Who knew it was bacterial, I just thought I had a long lasting virus. Cody has also continued to complain of ear pain and was very vocal about his pain in front of Dr. Mortelliti when we were there for Sergio. He took him and looked at his ear under the microscope and found some fluid behind the ear drum. It’s also very protracted (pulled backwards, it causes a lot of pressure and discomfort like when a plane descends to fast). He now wants to see him back in 6-8 weeks to see if he needs another tube in that ear. So much for our discharge from ENT! LOL
We are now changing pediatricians, just one more thing to have to do to complicate our lives. I needed the doctor to sign a piece of paper for Sergio’s nurses to continue to work here. For some reason, she refused. No explanation, no call, nothing, just a message from the secretary to say she says “no”. Without this letter, I would have to fire my current nurses and move to only nurses that work with an agency but the agency’s already said they don’t have any nurses to send. This was just one of many things, she also refused to discuss Cody’s weight at his sick visit and insisted that I had to make a well child appointment for that conversation. She also seems “put out” when I call or bring in one of the kids so I decided I just had to find a new practice. I will call on Monday to see if the charts are there and when we can begin to schedule appointments for the kids. But, we had already sent the release of medical records request, so I didn’t feel right taking Cody up there right after I had just done that, thus the reason we went to Urgent care.
Tray goes on Tuesday for his big cath. I suspect we’ll be listed by the end of the week or early next week. Tomorrow Joshua goes for his IVIG all day and Nettie has a follow-up with her eye surgeon tomorrow as well. I pray we’ll be home on Wednesday but, I have prepared for a stay until Friday as a precaution. I need to do some arrangements for child care but have most of the rest of the stuff under control.
Marriela is doing very well on her new medication dose and with effort on my part to keep her active and engaged in activities after school.
Nettie is doing wonderful and enjoying school way more than she thought she would. LOL
Well, that’s it for now.
Take Care and God Bless,
Renee
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