Wednesday, June 24, 2009

I Finally Did It

I ordered Karter's wheelchair today. It was a weird sort of excitement. I mean you never want to have to order a wheelchair for your child, but there was still a feeling of happiness when I placed the order; mainly because I know that it gives Karter the ability to be mobile and in time, in dependant. It means he can go to preschool and be part of the activities; it allows him to be able to take part in the world that goes on around him, without sitting in a stroller.

The 'At Home' program has paid for 80% of the chair, however there is an additional amount that we need to cover and it is still a fairly substantial amount. I am still currently waiting on a reply from our extended benefits to see if they will cover a portion of that. We should have an answer by the end of the week.

That leads me to this, a testimony of God's faithfulness to us. I have been very forthright when I share with people about the fact that not only has God covered our needs for food, clothing and shelter, but also in EVERY area of Karter's needs for extra support, equipment and different therapy's. Whether it be something that we need to pay for or that we need to qualify for, Karter has never gone without. This wheelchair is no exception! This past Sunday, we had a young married couple approach us and give us a cheque for a large amount of money towards Karter's chair. They felt led to bless him with that money. They told me that they had been blessed so much and in turn needed to bless out of that overflow. I cried uncontrollably while I sat there and tried to find something to say, other than Thank You! I am still overwhelmed by the gesture and so extremely thankful. So we fear for nothing, our needs are provided for! God has taken care of it.

Ordering the chair for me was a step of faith and an act of obedience. I am passionate and firmly believe the promises that God gives us in His word, and although I find the believing part not as difficult, it is the faith part (which involves an action) that is hard.

The wheelchair should be ready in about 4-6 weeks. I will keep you posted about how it all works out.

Thursday, June 18, 2009

Follow Up Visit

With the unreliable internet connection here at the hospital, I find myself unable to log in so that I can work, so I thought I might as well post now.

We got here to Children's at 10:30 this morning. An IV was started, again without tears (what an amazing trooper my little guy is). We waited 5 minutes and then they did the dye injection. We were then sent on our way at 11:00 to wait until the scan at 1pm.

We stopped by the neuro clinic as we waited in between appointment. The decision was made to up his meds until we can get the scan results back and come in for an appointment, most likely in July.

At 12:45, the anesthesiologist came in and let us know that they were on time. Amazing! By 1:00 he was in the room and now I sit waiting for him to finish up.

Today has been a really easy day here. Not much stress and very little emotion. Thanks for your prayers. Without them, we would have had a very difficult time making it through this week.

I want to leave you with something that one of my spiritual mentors sent me this week. It was their daily devotional on Tuesday.


Isaiah 55:8-13

8 “My thoughts are nothing like your thoughts,” says the Lord.
“And my ways are far beyond anything you could imagine.
9 For just as the heavens are higher than the earth,
so my ways are higher than your ways
and my thoughts higher than your thoughts.

10 “The rain and snow come down from the heavens
and stay on the ground to water the earth.
They cause the grain to grow,
producing seed for the farmer
and bread for the hungry.
11 It is the same with my word.
I send it out, and it always produces fruit.
It will accomplish all I want it to,
and it will prosper everywhere I send it.
12 You will live in joy and peace.
The mountains and hills will burst into song,
and the trees of the field will clap their hands!
13 Where once there were thorns, cypress trees will grow.
Where nettles grew, myrtles will sprout up.
These events will bring great honor to the Lord’s name;
they will be an everlasting sign of his power and love.”

Did you know that the battleground for the problem you are facing right now is in your mind and on your lips? If you will hit the devil with the Word and cast the care of the situation over on God, you’ll win.

Let me warn you though, hanging onto the Word isn’t always easy. The devil knows if he doesn’t steal it from you, you’ll use it to enforce his defeat.

So, don’t be surprised if he sends an evil spirit to exalt itself against the Word of God. If you’re sick, he may begin to tell you, “You’re not healed. It might work for someone else, but not for you.”

If he starts to tell you something like this, DON’T BELIEVE IT! Don’t buy it! Don’t start worrying about it and thinking, “Oh my, I’m afraid I’m not going to get healed. I sure don’t feel healed. Why I’m probably going to just get worse and worse…”

Remember this: It’s the Word that does the work, not the one holding onto it. It’ll work for anybody who’ll put it to work. It’ll work for you just like it worked for Jesus when He walked the earth.

He told Satan, “It is written!” No matter what the devil tries to tell you, refuse to let go of the Word. Tell him what is written concerning your situation. Let the Word fight its own fight. It’ll whip the devil every time.

Tuesday, June 16, 2009

Children's Visit #1

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I am currently sitting in the waiting room at Children's, in the nuclear medicine department. We arrived here earlier this morning so that Karter could receive an injection at the onset of a seizure. Then injection is radioactive material that once Karter is scanned, will show up in the area that the blood flows to during a seizure. That area is the place where the seizure originates from.

The IV went in without issue, Karter did not even cry (I would have!). Then we sat and waited until he had a seizure. Crazy really! We watched DVD after DVD (good thing I brought my laptop). The dye needs 90 minutes to fully do its thing before the scan. So they told me that if he did not have a seizure by 11:45, that they would inject him anyhow and make today the baseline scan that they need. At 11:42, he seized and the dye was injected. Ok, so patience - not my better any rate, I was relieved that we got a seizure after waiting all morning.

The scan is now delayed about 30 minutes. Karter does need to be sedated for the scan, and it seems that the anesthesiologist was delayed with another patient. So we wait. Karter has not eaten since supper last night. He has milk at 6:30 this morning and was allowed a small amount of juice at 9:30. HE is doing remarkably well all things considered. We did have to hold back his morning med's, so he will get those after the scan.

We will return here Thursday morning, however, we now do not need to come as early. I think they said we could come at 11:30 instead of 8:30. So hopefully I can arrange for him to get his final riding lesson in (grin).

These days are exhausting for us. And just being here really does bring back memories and feelings I would rather not relive. We are however, very aware that we are covered by the prayers of those who love and care for us.

I will update after Thursday's appointment.

Friday, June 5, 2009

Wheelchair & Preschool Update

I have spent a better part of this week working out some major details for funding for Karter. First off, his wheelchair does not appear to be covered 100% by the At Home Program. There is $1800 over and above the authorization, that we will need to cover. This is the best chair for Karter and so we are going to order it and sort out funding in the meantime.

I am first looking into our extended benefits to see if they will cover the top up amount for the chair. If that does not pan out, I will be applying to President's Choice Children's Charity for the funds. Obviously, if they cannot cover the amount, we will have to fund it ourselves. We are trusting the Lord for the funds to fall into place and will be, in faith, ordering the chair next week when Karter's rep returns from his time off. The company that we are ordering the chair from, will not require full payment from us, until the delivery date which is about 4-6 weeks. That should give me time to solidify the funds.

Secondly, I am working through the funding process for Karter for a one to one support for preschool. As of July 11th, Karter's birthday, he is eligible for one to one support through Supported Child Development, however because of lack of funds, Karter will be unable to access that option. This is mainly due to the fact that the government has not increased childcare funding for our area, to match the increased population. This is so frustrating for us because Karter cannot go to preschool without one to one support.

So my course of action, as Karter's advocate, is two fold. First off, I am in the process of applying to Variety Children's Charity for the funding to cover a one to one support worker for him. I have chatted, in length with a senior member on the application review committee. She has given me a lot of great answers and ideas on how to complete my application; what letters to include and things to write in my application to make it as complete and concise as possible. Secondly, I have contacted our MLA, Mary Polak with our concerns about funding and wait lists for Karter's one to one support.

This is all new territory for me. Please join us in praying for provision and open doors. We are trusting that all things will fall into place for September for Karter to attend preschool at Sunbeam, as well as with his wheelchair.

Wednesday, June 3, 2009

It's June already!!!!

I am trying to catch up on posting today. After many on the family site, I have now come here to give you a quick update.

Karter will be going in for his Spect scan on June 16 & 18th. His seizures have picked up again, undoubtedly because of his continued weight gain. The medication will not be increased until after the scan at which time we will be weaning him off the nitrazapam and most likely introducing something else.

After the scan, we will meet with Dr. Conoly to discuss further surgery. Our hope is that they get all the information they need from the scan to make a concise decision about surgery.

Karter's wheelchair is just going through the final stages of funding. Right now it looks as if we will have to pay about $1200 towards the chair. We are praying hard about this. Our hope is that At Home, will cover the full amount, if not, we are trusting God for provision for this money.

I am currently working through some applications for funding for Karter to have one to one support for preschool. It has been confirmed that he will not receive support until September of 2010. In the meantime, we need to find funding from outside sources so that he can have support in place for September. Please pray for a clear way to be made for this and pray for me as I go through this application process.

I will update you again soon.