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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 19 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 13 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 10 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, 6 years old, 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!). 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, 3 years old, was born at only 25 weeks and spent over 7 months in the NICU. He also has Chronic Lung Disease and required oxygen around the clock until just recently. He is visually impaired, takes all of his food through a J/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
Saturday, July 4, 2009 9:09 PM CDT Hi everyone,
Happy 4th of July!!!!!
We’re going to my sister in laws here shortly for a nice cook out (or cook-in depending on the weather). My sister and nephew came into town last night for the weekend as well. They’re going to a friends for the day and will be back tomorrow to spend the day with us.
The kids are doing well for the most part. Sergio was at the doctors yesterday to some serious reactions to mosquito bites. He was eaten alive the other night and most of them are severely swollen and red and hard so I wanted to know if there was anything else we could do to help him until they heal. We’ve tried to mosquito proof his room now and so far, no new bites. He’s on his O2 as per the doctors orders now 24/7. He hates it! I don’t blame him, I hate it too. He doesn’t need it all the time and I’m having a hard time understanding the logic of keeping him on it continuously, but that is what the doctor wants and I’ll play the game for a bit longer in hopes it really is the answer to the problem, but I don’t believe, in my heart, it is. I did also request another cardiology work-up with Trayvon’s cardiologist. We’ll see if they can explain the rapidly fluctuating heart rates and increased need for O2 at random points in the day. But other than that, he’s doing much better!
I had forgotten this was the week for Joshua’s IVIG, and had to call at 2:00pm on Friday afternoon to see if they could fit him to access his port. Thank God they said they could if I got him there immediately. I started his IVIG at 7:00am this morning, however, his pump was having PMS in a major way! It only wanted to do the first of the four steps and would only go 33cc/hr. He has 300cc to infuse so we were looking at a 10 hour infusion, that wasn’t working for me! LOL So I called the pharmacy and waited and waited for them to call me back. Finally, an hour after I called (I had fallen asleep waiting) they call and I realize that, for whatever reason, the pump is working now. Cool. So we finally get the infusion done and we are in a mad dash to get to the cookout since we’re an hour and a half behind due to the pump. Fun. LOL We’re also back in full seizure watch mode. He had another big drop seizure while playing the WII last night and hit his cheek hard on the corner of a stand in the living room. It’s always hard to see him go through these seizures and it’s even harder knowing there is no way to stop him from hitting the ground so hard. He now wears a skateboard helmet at all times so it can’t fly off when he goes down. It’s sad to see him with the stupid thing on his head all the time. I hate seizures.
Tray is leaving for Camp this Monday for a week. He’s looking forward to it. I’m nervous since it’s for siblings and he’s not just a typical sibling (most of whom have no health concerns other than say asthma or allergies) and I was worried that there wasn’t enough medical staff on hand. But, they’re going to give him a one on one counselor and monitor his activity level closely (at least they say they are LOL) and there is an RN, LPNs and a part time doctor on site this week, so he should be good to go.
Marriela is now on her full strength meds and we’re waiting to see if there is a big difference. I suspect we’ll have to give it a few weeks to really know for sure, but here’s hoping!
Cody is doing great!
Nettie is a walking phenom! She is walking for up to 2 hours a day now! It’s unbelievable how much and how dedicated she is to walking! We’re very proud of her and hope the efforts pay off for her in a way she can see easily (clothes fit better, less back pain, etc.). We also finished up her IVIG infusion today as well so now we’re all set for the week. I was so proud of myself as well, because I gave Nettie her Depot shot for the second time ever! However, I didn’t do as well as I did the first time and she was still hurting bad 2 days later. I was crying like a baby after I did it and all she said to me was that she was proud of me for doing it. What kind of child says not to worry about the pain you caused them but says they’re proud of you for causing it in the first place! I told her she was an awesome daughter and I promised to do it perfect next time (three months from now, so I’ll be practicing on some oranges until then!).
This week they all start their various summer activities. Joshua and Nettie start the Casey’s Place summer program, Marriela is off to summer school, Tray to his first of 3 camps and Cody. . . Well he’ll just hang with Sergio and I for a bit. LOL
Till next time!
Renee
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