Friday, January 8, 2016

In Which Isaac Is Doing Well And I Go To The Doctor

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

What's new?

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. 

Happy fall everyone! 

Tuesday, August 11, 2015


Isaac has been seeing a new Doctor for his immune deficiency. She was hoping that a shot called Prevnair would help him build antibodies to the kind of infections that he is prone to. The lab work showed that it did not. It's clearer now that Isaac may need further treatment, which would be an infusion of antibodies called IVIG therapy. 

This treatment does not go without side effects so it's hard to know if it's the best decision. The only way to find out is to try it. If he doesn't handle it well, I wouldn't want to put him through anything that reduces his quality of life (a smiling boy) so it may not be worth it. If it goes well it could increase his quality of life as he could potentially go to school and places without getting sick as often. Win! 

The other tough decision is school. The Pulmonologist doesn't really want him there, but my plan was to send him there on a modified schedule. He really loves it as long as we can eliminate the possibility of getting sick all the time. Can we just have the best of both worlds? I'm the kind of person who has trouble deciding what to have for breakfast so mega decisions like these and a peace of mind does not come easy. Thank you for your good thoughts and prayers as we decide what is best for our sweet boy!