Nicole’s Narrative…

I had asked Nicole to try and find one positive thing to add to her narrative and several people who read my blog had said if she adds to it let us know. Nicole didn’t change anything to the paper but did add this to it. 4 Sometimes you gotta fight. Fight for what you need. A lot of people don’t fight. It could be because they’re afraid to, or simply because they don’t want to. But if...

Caregifters Book…

I received my hard copy book yesterday… woohoo… I haven’t had a chance to read it all yet but it is amazing. Kathy posted a link about it on her facebook page and I stole the link after I received the book and posted it on my facebook page. This afternoon I received a private message via facebook from a contact I have at the Pulmonary Hypertension Association (PHA) asking me if I would write a...

Important Things in Life

I needed my sister to surprise me that they are having their baby early to get me out of my post-illness funk. New baby should be okay, she says, but he will visit the NICU as a precaution. The little rascal is so eager to meet his siblings, he decided to come at 35 weeks. Wait until he realizes that in the womb, he gets Mom all to himself. If he only knew, maybe he wouldn’t be in such a hurry. I live very...

A Narrative…

Nicole had to write a narrative for school that relates to a real life experiences that teaches or show a lesson. She finally got it done. I think it is very good but also saddens me at the same time. I did get her permission to share it. 1. I feel invisible sometimes. It makes me very visible in many ways. People judge me because of this invisibility, but that’s because they don’t understand. They of...

Long Week

Three kids—all sick on and off for almost two weeks. Now, that is not an easy time! A funny phenomenon happens, though, when the kids get sick. I just can’t wait for them to get back to their “healthy” states of being. It’s always a relief when the flu is over and my Carrie is back to her Carrie self. Or Hannah is just dealing with her “typicals,” as we have come to call...

Another Decision

I spoke with to the nurse, Genny, at Nicole’s cardiologist office late this afternoon. She called to let me know that the cardiologist and the PH specialist that I took Nicole to last week had talked. The issue with this PH specialist is that he doesn’t take Medicaid which Nicole has through her SSI. He told the cardiologist he would treat Nicole irregardless of payment. He has already instructed the...

Had a Second Opinion…

I thought I had written a blog about this but it doesn’t look like I did. I decided that I wanted a second opinion about Nicole’s lung disease pulmonary arterial hypertension as I have had reservations about the care she’s receiving from her current ph specialist. I meant one of the local PH specialist at the local support group meeting and he agreed to see Nicole. His office doesn’t take...

It’s One of Those Days….

Nicole’s breathing treatment schedule was all out of whack yesterday because we were gone between rehab and her cardiology appointment and I don’t like taking it with us especially if I will have to leave it in the car so I decided not to take it which meant if she was going to get her four doses in she would take her last one at 12:30 a.m. instead of 9:30 p.m. I have to dump out the water and throw...

The Typical Kid

Wouldn’t you know it? My middle child, my son Sam, is who I write about first. I bet he’d be happy to hear that I’m talking about him first actually. I chose Sam because I just experienced my first night terrors with him tonight. Both his dad and I had had them as kids. I don’t remember my siblings having them so tonight was my first time to see a night terror. What a wild ride! Actually Sam...

Hello Everyone!

(Editor’s Note: We welcome a new blogger tonight. Kristen and her husband have three children, two with special needs.) Hello to all! It’s nice to be able to share my caregiving experience with others who understand or are looking for someone to understand what they are going through. Although I often feel so alone in my caregiving journey, I know I’m not. It’s hard to remember this every...

Follow Up…

I guess this will be a follow up to last week and Roaringmouse helping me by hooking me up with her friend who I hope gave me some good information. He suggested and made me think of a lot of things that I didn’t know. Also, recommended things to do which I will as soon as I can breathe. I also would like help with funding a oxygen concentrator for our home so that I don’t rely on a company. The reason...

Journaling…

I attended the Open House journaling class this afternoon. I have also been taking the three-word journaling classes for quite a long time with Denise and Bette. I can’t tell you how much I look forward to them and how much I have learned. I would urge anyone that can attend to do so. Anyway, during the class today we were talking about second guessing ourselves. I was talking about how I let others allow me...

I Can’t Believe This….

I got a letter from Florida Medicaid which states that the Social Security Administration has ended your child’s SSI. Your child was covered under the Medicaid program because they were on SSI. DCF now must see if there are any other Medicaid programs for your child. This has been an extremely bad week …. I know it could be worse but I am just about to lose faith in everything … our government,...

Thinking Out Loud…

Thank you to those of you who responded to my blog “I’m so upset.” I am going to try and talk this out in my head. After I talked to the first attorney in 2010 or 2011 I decided that I would just let the whole thing go. In Oct. 2010 at Nicole’s last cardiologist appointment the doctor said that it was total malpractice on behalf of the cardiologist who read Nicole’s EKG in 2001. His...

I’m So Upset…

I have struggled with this issue before regarding Nicole’s medical issues and the history with them. I have struggled to come to terms with whether or not to find an attorney to sue for medical malpractice. I did talk to an attorney I believe it was in 2011 but could have been in 2010 and was told that the statute of limitations had expired and while he sympathized with us we had no case. At one of her...

January 23, 2010

This is a day I will never forget… just like the day I got married, the day my mom died, the day Nicole was born and many other important days in my life whether good or bad. It was this day that changed our lives forever. It was this day when we found out that our precious daughter had been born with a congenital heart defect and because it wasn’t diagnosed for 15 years it led to another rare heart...

Update to Oh My Gosh (OMG)!

Thank you to GJ, Trish, Denise and roaringmouse (Laura I think) for your support about being asked to chair a session on School and PH Parents at the PHA conference in June. I had several really down, bad days after our trip to Gainesville. I was down on myself because my house is a mess, I can’t find anything unless it takes me 15 minutes or more to find it, I have mounds and mounds of paper between medical...

2011…

Trish inspired me by her post about 2011. I can brag and say that I’m later than she is! I meant to get this done earlier but it has been a busy start to 2012. I don’t think I achieved as much as Trish but we had some good times/accomplishments. The year started out in January with finding out that Nicole had been chosen as United Therapeutics patient of the year. They manufacture several of the drugs...

Update on Nicole

Thursday we went for our quarterly appointment for Nicole at Shand’s Hospital. One of Rick’s customers at work had told us about a different route to take that was quicker and would take two hours and five minutes as opposed to two hours and thirty minutes the way we had been going. We left about 7:35 a.m. as we had a 11:00 a.m. appointment and boy was it cold. We never know what the traffic will be...

Oh My Gosh (OMG)….

The Pulmonary Hypertension Association (PHA) is the leading organization for research and education. Every other year they have a weekend conference. In 2010 it was in California (I believe Anaheim). This year the conference is held in Orlando, Florida at Sea World. This is my backyard. They offer scholarships to help people be able to come who aren’t financially able to afford it. I applied for a scholarship...

Embrace…

I won a copy of Denise’s book Take Comfort Too during the blog party week. I can’t believe how much this has blessed me. It’s like Denise can get into my head and knows just how I feel. I read one page a day… one reason is so I take longer to read it … and I won’t (maybe) finish it. I found the word embrace really impacted me. This is what Denise wrote about this...

Yikes…

Happy New Year to all! Last April I believed that God put it into my heart to go back to school and get a degree as a pharmacy technician. I believed that in some way this would help Nicole. I knew that I couldn’t afford to do this so if this was a “God thing” he was going to have to provide for it. In May I won the caregifter’s award through this website in which I received $500. I had...