Sunday, November 30, 2008

When God Speaks, We Listen!

At the beginning of the year I told you I felt that the Lord spoke to me that this year was a year to "Take back what the devil has stolen from us".

I sat this morning reminiscing of the year gone by; the things Karter has accomplished and the goals we had set. The house was quiet, Paige was at church (I wasn't feeling well so Karter and I stayed home) and I was spending some time praying and conversing with God.

The physical goals we set this year for Karter was that he would be sitting independently and that he would be rolling. Is he there yet? - well no. He is really close in both areas, but we have not yet reached our goal.

I started thinking about it and thinking about what it was that I was certain that the Lord spoke to me at the opening of this year. I found myself becoming a little discouraged. "Lord how are we taking back what was stolen if he cannot even sit or roll?" Then as quick as I could think those thoughts, the resounding answer "I did give you back what had been stolen." I thought about it for a while - "really?" And then it came to me. Karter has never rolled or sat or walked or talked - so that was never stolen from us, it couldn't have been, that is something we never had to lose. It is something we will have, we just have not seen it happen YET.

So I sat a while longer and started to think about what it was that we had lost last year. Here are a few -

1 - Because I quit my job and had no income for 8 months (so that I could properly care for Karter in the beginning stages of this journey) we lost our financial stability. Not wealth by any means, but the comfort from month to month that things were taken care of.
2- Mental and Physical Wellness - Although we maintain that God truly has carried us in this journey and has sustained us, there were definite times of real stress and times where (me especially) our coping strategies for everyday life were challenged. I have shared with some of my close friends, that I did see a wonderful woman counselor for a time. Something that I stand today very proud to say I have done.
3- A cohesive family unit - When you spend close to three months on and off in the hospital and then life as you dreamed has been turned upside down, the time for extra things as a family falls by the wayside. Time together doing things like planning to go camping, going to the park or doing other family things, tend to get overlooked just so that you can get through each day.
4- Fear of not being able to take care of Karter properly - we had no idea what Karter's needs would entail. Nor do we really fully now. But we do have an idea when it comes to therapy and different equipment needs. Both of those are very expensive. With Kurt's salary, those things are financially unattainable. Something that was really scary for us.

I have said all that to share this with you. This year we have really seen breakthrough in all of these areas. Here are some examples of that:

1- I have been blessed with an amazing job. One that I can do from home at my own pace. Although it does not allow us to retire early (grin) it does help out financially every month. In addition to that, this year we were blessed with a miraculous tax return. One that honestly I cannot speak of without becoming emotional over. Karter received disability status and that status was backdated to his birth. The government recognizes that with a monetary amount to help families each year recoup some of the costs and burdens that may take on a family. We were able to pay off the debt that we incurred the previous year when I ceased to work. In addition, there were other benefits that we received. That tax return was also stretched to allow for us a beautiful family vacation. We took back the financial insecurity!
2- Although I feel a bit funny sharing this, I feel it is important in this post. Early this year, I hit a point where I had to make a decision to be healthy. My body was weary and I had to choose to make some lifestyle changes that would make me well for my children. If I was not healthy, how could I do my job as a mother and take care of my kids? I changed some things and finally lost the baby weight (ok almost all of it - I am still working on the last few), I found a way balance out my hormones (they were completely out of whack from having children) and made time to be active. These things revolutionised my ability to cope. I felt good about me, I felt well, both physically and mentally. Joy consumed me in a way that I had not felt in a long time. The outside of me became a spiritual expression of who I was on the inside. I felt at peace with myself both mentally and physically
We took back mental and physical wellness!
3-This year, as we spent less time at the hospital and more time living, we found ourselves with the luxury, once again, of planning. The spring and summer months were filled with days at the beach, fishing trips for Paige and Daddy, trips to the park, BBQ's with friends, a family camping trip and an amazing vacation to Maui. We made many memories this year as a family. We took back family time!
4-Finally and most importantly, we have been SO blessed this year. Early in the Spring, we received confirmation that Karter had qualified for the government 'At Home' program. It is a program that will fund his equipment needs and various therapy needs he may have in the future. What a weight lifted! These were expenses in the tens of thousands of dollars - unfathomable for us on a church salary. In additiona to that blessing, throughout this year, the Lord has laid it on various hearts of those who love Karter, to bless him with monetary gifts towards his pending riding therapy (commencing in January of 09)- another expense that we would have had a hard time finding the funds for. I am happy to report that he has enough money to cover every penny of those expenses until the summer (that is three 10 week sessions of riding therapy) There are other countless blessings, too many to write about here. Karter has been taken care of, better than we could have ever dreamed - Fear of taking care of him - Taken Back!

I shared this with you not only as an account of the great things the Lord has done in our lives and Karter's this year, but also to say that sometimes God speaks to us and we do listen, but we hear how we want to hear. I heard with blinders on. I thought the only thing He could mean had to do with Karter mobility. When I look back now - He had such a bigger plan for us and our little guy. We will see those goals met, for certain. But our needs were taken care of well beyond what we could have even fathomed. God won - we did take back what the devil had stolen from us, that is the truth! We serve an Awesome God!

Wednesday, November 26, 2008

What's Happening Around Here?

Time is flying by and I realized that it has been near a month since my last update.

Karter was scheduled for an MRI today, however due to illness, we had to reschedule for December 15th. That day we will also see the opthamologist and the neurologist.

Karter has been so happy lately. Enjoying playing and watching what goes on around him. He has been a really pleasure to be around. He continues to make small gains every week. He is still rolling to his side and grabbing somewhat with his right hand. At physio yesterday, we were working on sitting. It was the first time I really saw him sit almost solely on his own. He is really close. He continues to get stronger all the time.

Our physiotherapist has confirmed that Karter will start riding on Thursday mornings at 10:30, come January 9th. We are so excited about that. We have heard such good things about this therapy. I will take a 1000 pictures of his first ride - you can be sure of that! You will be the first to see them.

Other things on the horizon...we are going to move Karter from a crib to a bed. There have been quite a few nights where I have come in and his legs are either up the side of the crib or his foot is stuck between the bars. As he starts to move more, the crib appears to get smaller. With the possibility of sleep seizures, we feel it is time to remove the harm of getting his leg stuck between the bars and getting injured. So it is off to look for bedding...a Christmas gift from us.

Karter's neurologist has started him on a low does on Nitrazapam, a drug he was on before. We give it to him only at night. Since he has been on it, he has not had a sleep seizure, night or day. I am really not thrilled about this drug because it increases saliva and makes him drool. In the past, it also contributed to his reflux. I hope that this is just a temporary fix. I will talk with the neurologist on the 15th when we see her at the appointment.

We are gearing up for a great December. Christmas will be at home this year, as Kurt's parents are going south for the winter (ahh retirement!. We hope for a visit from Kurt's brother Mike and also look forward to our Aussie friends returning for Christmas.

Saturday, November 8, 2008

Aloha! - Hello, we are home!

Well, it has been about a week since we have returned from our amazing time away. I spent the last week just catching up and re-introducing myself back into reality. I figured you may be interested in an update on Karter.

While we were in Maui, Karter started having seizures in his sleep. About 40 minutes after he fell asleep, he would be woken by a seizure. This would happen at nap time and in the night. We called Children's Hospital and they advised us to increase the dosage of his medication. We did. The seizures went from three times a day to once or twice. They have continued fairly regularly since then.

We do have an appointment with our family doctor this week and with Dr. Connoly at the end of the month. I will be calling again and they may have to up that appointment. Although it sounds like we have taken a step back, we feel like this is par for the course. Karter has not regressed in any way. Really, I think we have made a few gains. He is not really effected by the seizures, he just returns to sleep after they happen. It will however be interesting to hear the doctors perspective on what is going on. It is becoming increasingly harder to keep his meds balanced now that he has started to grow and gain weight - but we are so thankful for that growth.

While we were away, Karter started to roll to his side quite frequently and has made it over a few times. He is trying really hard, it is so nice to see that motivation in him. Also, we have seen him really start to grab things on this tray with his right hand. It is purposeful movement, something we have not yet seen. In addition, we have noticed a real improvement in his tracking and eye gaze. He is tracking objects and people a lot better now. He is also making much better eye contact.

I will keep you updated as to what the outcome is with this influx of seizures. Please keep Karter in your prayers and join us and we pray that these seizures will pass and come under control with easy solutions.