Wednesday, March 6, 2019

It's Been Awhile!

Hello, its been a very long time since I posted on how we are doing!

I just happened to stumbled upon my blog this morning and thought to myself "hmmm I need to write in this thing." So much as changed and so much has also stayed the same. Isaac still lives in a  group home for medically fragile children that's just 10 minutes away from our house. I try and visit him about 2-3 days a week. He has a blast when I see him because I make him laugh so hard. He loves his visits with us, especially on Sundays when all 3 of us usually come and see him after church.
Julie, his amazing nurse still works there and is a familiar face for his happy soul. He still amazes me with how happy and content he is. I don't have to worry about how he is doing when I'm not there (unless he is sick) because I know he is his happy and content little self.

The group home has been a blessing for us, but something we definitely had to get used to. Surprisingly I have only gotten positive feedback from others who knew the struggles our family went through, especially when I literally fell apart and everyone was going down with us. I love how involved I can be and still feel like a "person" again. Still, there will always be a whole host of mixed emotions.Some positives from it has been more time with my daughter who by the way is 17!!! Sam and I just went to Hawaii a couple weeks ago for our 20th anniversary.  I also got a part-time job at a thrift store that I enjoy.

Isaac is going to be 12 in April!!!! Remember when a milestone was for him to turn 5? He is getting HUGE and nearly impossible to pick up. He still attends school in the fall and spring, but remains in the home-bound program during the cold and flu season. Isaac has been in okay health. The worst was probably this past year when he had to have 2 separate urology surgeries and ended up really sick after each one. He still gets IVIG treatments for his immune system deficiency about every 3 weeks. A nurse from the infusion center comes in and gives him his treatment for a couple of hours while he watches movies. Recently he's been pulling tricks with his blood pressure and so he recently saw a Nephrologist to find out what might be going on. We are still waiting on the lab results of that. Then he might have to go on some BP medicine.

I'm sure there is SO much more I could write right now. Sister is already in college! She started a program where she goes to college and also gets high school credit at the same time. Because of Isaac, she wants to potentially do something in the medical field. She's driving and growing up fast! Her hobbies still include girls wrestling, violin and being a social butterfly as usual.

Well that's all, hopefully I can start remembering to write in this again. Thank you to everyone who has and continues to be part of our journey!

Sunday, November 27, 2016

Life Is Different

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 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

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.