by Jane
May 24 2013 in Caring for Children, Jane's Blog by Jane
This I copied and pasted from my facebook page… Here’s the update of Nicole’s appointment yesterday with her PH specialist. We had several issues that we wanted to discuss. The first and most important was the management of the subq pain and switching to IV. The doctor asked Nicole what she wanted and Nicole said [...]
by Jane
May 16 2013 in Caring for Children, Jane's Blog by Jane
I would really like to have you. Peace to me would be a clean, uncluttered house with only the things that I use and are special to me as well as having a solid routine for maintenance. I want to walk in my house and feel at peace instead of feeling chaos. I don’t know [...]
by Jane
May 15 2013 in Caring for Children, Jane's Blog by Jane
Here is a recap of Nicole’s transplant appointment. The last time we were there, on March 18th, it was an appointment with Rick and I without Nicole. I suggested that I wanted another center to either agree/disagree with their recommendation of lung/heart. At that time the doctor said he would send referrals with Nicole’s file [...]
by Jane
May 14 2013 in Caring for Children, Jane's Blog by Jane
On April 30, 2013 we had nasty storms come through our area and over our house which resulted in a power outage. I wrote about it a little bit on Facebook and @roaringmouse (a former blogger here now on AfterGiving,com) had asked me if I would type up an essay regarding our experience so she [...]
by Jane
May 9 2013 in Caring for Children, Jane's Blog by Jane
I ordered a four-week audio/workbook class on procrastination by Brook Noel who is an author and time management expert. Her program is called Make Today Matter which reminds me of living in the moment and only for today which Denise says a lot. I truly believe that my lack of time-management skills, my lack of [...]
by Jane
May 2 2013 in Caring for Children by Jane
My homework this week from coaching with Denise last week was to write a letter to my mom. So here it is. I think I said everything I needed/wanted to say. Dear Mom: I can’t believe that the 15-year anniversary of your death just past. It seems so long but at the same time not. [...]
by Kristen
May 1 2013 in Caring for Children by Kristen
by Jane
Apr 26 2013 in Caring for Children by Jane
During coaching with Denise she asked me to write for 15 minutes every day for a week about my parents’ divorce. I am sure that a lot of my issues and the way I handle trauma/pain in my life can stem back to this. This is what I wrote in the week. Sometimes I think [...]
by Jane
Mar 26 2013 in Caring for Children by Jane
I wrote this on my facebook page this morning so if you saw it there I apologize for the repeat. I am going to talk aloud about something the doctor at the transplant appointment talked about. Nicole hasn’t asked me what happened at this appointment and this is something that we really need to discuss [...]
by Jane
Mar 20 2013 in Caring for Children by Jane
I participated in a webinar today through the PHA Caregiver’s Telephone Support Group called Everyday Advocacy. It was a fabulous presentation done by a clinical social worker at a PH center at Sanford University. She facilitates the support group calls on a monthly basis. While it did specifically relate to PH it is information really [...]
by Jane
Mar 19 2013 in Caring for Children by Jane
I keep thinking about this since yesterday’s appointment. My perspective as a mom and a caregiver is different than Nicole’s perspective as the patient. My perspective, and while I believe this is selfish on my part, is that I want Nicole with me at all costs… meaning I want her alive. I don’t care the [...]
by Jane
Mar 19 2013 in Caring for Children by Jane
Rick and I met with the Medical Director of the Lung Transplant program and the social worker yesterday. Nicole was not present for this. I don’t even know where to begin as I try to process this… my head hurts with it all. I am very upset as for some reason my recorder on my [...]
by Jane
Mar 11 2013 in Caring for Children by Jane
I have been struggling with writing this for about a week. I think that this, acceptance, is the hardest thing that I will have to do when it comes to Nicole’s diagnosis and her day-to-day life. For the first one to two years after her diagnosis my first thought when I woke up was this [...]
by Jane
Mar 8 2013 in Caring for Children by Jane
Denise had asked me to write a blog about how the speech went last week. I am a little behind in getting this done as I also want to write another blog and am having a hard time getting something down on paper. Sometimes I can write just from my head and other times I [...]
by Kristen
Feb 28 2013 in Caring for Children by Kristen
It was this time last year when I got involved with caregiving.com, planning to blog about having three kids and caregiving for two of them. Last year the flu kicked in with the kids and my oldest daughter’s mystery illness started roaring its head pretty ugly. So, it took a very long time to come [...]
by Jane
Feb 27 2013 in Caring for Children by Jane
Nicole was born five weeks premature and weighed 4 lbs. 13 oz. Everything seemed normal accept she wouldn’t or couldn’t breast feed. The nurses could only get her to drink sugar water which probably explains her sweet tooth today. I hadn’t picked out a pediatrician yet so the nurse recommended one. I seemed to like [...]
by Jane
Feb 24 2013 in Caring for Children by Jane
by Jane
Feb 15 2013 in Caring for Children by Jane
I had really believed that I had worked through my issues of anger at the medical community over the extreme negligence that has been displayed during Nicole’s life. Obviously, I still have a way to go…. After yesterday’s, prescription debacle and the anger I have at the doctor who either personally wrote the script for [...]
by Jane
Feb 10 2013 in Caring for Children by Jane
We started the transplant evaluation process in November 2012 after both Nicole’s PH specialist and her cardiologist agreed that it was time for this. She saw the heart/lung surgeon and then she saw the lung director at the transplant center. The doctor ordered several tests which included an echocardiogram, a CCTA scan in which they [...]
by Kristen
Feb 7 2013 in Caring for Children by Kristen
I went to Chemo Teach with my mother-in-law yesterday. She is beating breast cancer as we speak. The cancer was diagnosed in December; she had a double mastectomy in early January and is headed to chemo on Friday with radiation later on. In Chemo Teach, a nurse walks through the process of what is involved [...]
by Jane
Jan 27 2013 in Caring for Children by Jane
by Kristen
Jan 23 2013 in Caring for Children by Kristen
Here is a quick summary of my family: We have dad, myself (the mom), Hannah, Sam and Carrie. Dad and myself are parents to three children. I am the main caregiver for Carrie, our youngest. Hannah is 13. She has left hemiplegia and, six months ago, we learned she is gluten-intolerant. Once we removed gluten from her diet, she has [...]
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