Sunday, November 27, 2016
Life has been very different since my last post which was back in January. As many know I am the kind of person who puts 110% into being a Mom to my kids. Unfortunately I forgot to "put on my oxygen mask first" and the plane began to crash about a year ago. Shortly after Isaac started needing IVIG treatments I started having some pretty severe symptoms stemming from anxiety....to the point where I wasn't unable to eat, sleep or function. In the spring we put Isaac in respite care at a wonderful home for kids like him with multiple medical needs. This was supposed to be a temporary thing for healing, but he is now considered "voluntary placement." This means that we have many parental rights such as making medical decisions, visiting, going to appointments and even taking him home on occasion. In fact we recently took him home for Thanksgiving and his Grandma's birthday party. Isaac gets 24 hour care where he lives. The best part is that Julie, a nurse who did homecare for us for sometime decided to work there too. We have a peace of mind knowing that she is working there with him. Eventually I got on the right meds and started taking care of myself. I started healing. I'm slowly finding where belong, since I was Isaac's main caregiver for 9 years. I started writing for a magazine at our church. I am also volunteering at a crisis pregnancy center. I have very little recent employment experience so I'm finding where my strong points are. I'm very busy with a teenage daughter who has many after school activities and carpool. I still go to many appointments with Isaac and visit him frequently. We have also become very attached to some of the other kids at the home. Here are some pics of our many visits since last spring....
Friday, January 8, 2016
There are several things I've learned the past few months.....
Who my real friends are. I've even made new friends in the journey.
How important my family, especially my husband is to me.
Feeling good, thinking well and finding joy is more important than anything money can buy.
It's Ok that I currently can't be or do the things I'm used to doing.
It's Ok that I'm the one who has to go to the Doctor.
So what happened? Back in October I started having awful physical symptoms that was possibly triggered by anxiety. This went on for many weeks. I went to counsellors, doctors, was prescribed this and that. I finally crashed and burned in November I had to get treatment. My husband had to juggle Isaac's care, the nursing schedule and taking Autumn here and there. Not to mention during that time our city had a blackout from a 70 mile an hour wind storm so Sam was taking on helping family members and their homes. I came home right before Thanksgiving. I have lots of physical symptoms, mostly related to the meds or lack of adequate rest. It feels like a long road ahead to recovery. Many people have said it will get better.
Isaac is doing well through all of this. He's getting so big and has a big boy look. He is enjoying having the teacher and therapists come to see him during the week. Winter is hard because we don't get out much.
We had a good Christmas, even though I wasn't feeling quite like myself. Oh and during all of this suddenly my beautiful daughter grew up!
Thanks for the continued prayers.
Friday, October 2, 2015
Isaac has had 2 IVIG infusions up at the hospital since the beginning of September. He has handled it well with no major side effects.
It does make for a long day and increased stress taking Isaac somewhere for 5 hours every 3 weeks to have this done. I personally don't know if it's worth the stress. I am working on getting an alternative treatment that can be done in the home that may not take as much time.
In case you missed why we are doing this...
-Isaac has a condition called hypogammaglobulinanemia
-This means that he is very prone towards infections that normally are defended against by antibody responses. He also has a low white blood cell count which makes him very prone to illness.
-IVIG is called intravenous immunoglobulin. It contains antibodies from over a thousand blood donors. Isaac gets this through his port a cath so he doesn't feel any pokes or any pain during the administration. It usually takes 3-5 hours to administer and is usually done every 3-4 weeks.
We could use some prayers that
-We have wisdom to know what avenue to take next with this.
-We can get it done eventually in the home (before I go insane).
-He can start attending his school again by the spring.