New Chair

We finally got word that Christian should have his new chair no later then 3 weeks.We can not wait for that.

School Time

I got the call today that Christian does have a nurse for the bus and for school so this means he will be going back on the 5th. Hopefully things will not change between now and then and he will get to go.

Other news his MRI is on Sept. 7th so we are hoping and praying that this will turn out to be good news as well.

bison game

It was the polish festival at the game. This is a staff member giving Christian the practice ball they used that day.

bibleschool pics

Spinal Tap Results

We got the call today and the spinal fluid came back negative.Thank god for that. One step down and one to go, his MRI is Sept. 7th and hopefully it will be good news as well. Thank you everyone for your prayers.

Photo Sales

Hi all, we are going to attempt to start a business selling photography and our intention will be to give a percentage of our sales to ependymoma research so that hopefully some day they can find a cure for Christians brain tumor type. Here is the link for our site and we will also have the link under the links section on the right side of the page. http://cncphoto.org/
Thanks.

Spinal Tap

It will be Friday Aug. 10th at 11:30 so we are asking everyone to say a little prayer around that time that everything will be ok.

Good News and Bad News!!!!

Good news first Christian went to the eye dr yesterday and his vision in his right eye is 20/20 the dr as well as us were surprised, but thats great news.

He also had the nerve testing yesterday and there is no nerve function at all on the right side of his face.

He had his MRI on Tuesday and we have just learned the news they are not sure if its the new machine or tumor there is a spot on his spine and the spot on his brain is growing. They want to do a spinal tap to hopefuly rule out tumor in the spine and another MRI in a month to see if its still growing in his brain. So everyone please say extra prayers that this is not tumor.

Breaking the rules!

We were told Christian should not go swimming with the trach, but we wanted him to enjoy the summer like all the other little ones, He had so much fun just sitting there and moving his hand and leg. Thats all that matters to us.

pics

I thought I would add these pictures of Christian trying to crawl over the weekend. He still is not able to be on his hands and knees but he figured out another way he could do it.

Few updates

This past week Christian has started all of his therapies and the teacher, so far things have are going well. PT brought a walker type piece of equipment to help him walk on his own maybe that will make him feel more independent.

We did take him to the doctor Thursday he was running slight fevers and throwing up his feeds turns out he has an infection so she put him on strong antibiotics. He will be on this for 10 days.

Wednesday we took him to see a plastic surgeon about his facial palsy. He told us that he feels Christian has tone in his face and not to do the 7Th/12Th nerve graft. And that we don't need to rush on this for he is still young and growing. He did mention doing a muscle procedure or a sling procedure in the far out future. Our NS here and a doctor in Tn. are both now saying its to late to do the 7Th/12Th surgery. So now we are stuck with what are we suppose to do, so we are looking for another doctor to get there opinion. The plastic surgeon also mentioned getting him tested to see if there is anything working in his face so this is something else we will look into.
We just want whats best for Christian and wish our doctor wouldn't have told us to wait back in march. We will update more as we figure out things.

Therapy updates

Christian will be starting his summer sessions starting Monday the 9th. He will get a teacher, Speech, OT and Pt so our week will be busy. We are hoping once he starts therapy that his walking will take off and that he will be able to use his hand. I will update sometime after he starts and let you know how it is going.

Celebration Pics

Few updates

First off today is Christians 1year cancer free anniversary YEAH!!!!!!!!!!!! it has been a rough road the past few months but we have him and are enjoying every second that we do.

Second we will be getting a nurse she actually will be starting today so we will see how this all plays out.

Some Updates

First off he went to the ENT yesterday and they did not say to much really just checked his site and said come back in September for a scoping to see how the cords are doing. And if they are working and he is doing better then we can start putting smaller trachs in and begin the process of taking it out all together!

For Ms Fawn and Mr Robert we thought you would like to know that he is now walking with our help but he wants to do it and that is great news for us!

More great news today he said mom! yes thats right he talked, he said dad and nan and tried to say Carter. So maybe this is the start of it all and he will be talking in no time. He still will not wear the speaking valve but if can talk with out then thats fine with us.

Relay Pictures

Here we are at the Relay for Life walk. It was an experience I will never forget. Here are a few of us walking the survivors lap, Christian holding on of his luminaria bags and then all of us as we were leaving.

Celebration

We will be having a little gathering on June 20th @ 6pm to celebrate Christians 1 year cancer free date. If you are in the area please stop by and enjoy the evening with us.

appointment update

Today was a hard day for Christian had had his appointments with his Onc. Dr and then saw Neurosurgery N.P. to remove the stitches. Some of them had grown over and was stuck so she had to pull harder to remove them. Meanwhile Christian is very upset it was all I could do to hold him still daddy had to help as well and hold his head. She did leave one stitch for it would not come out so we have to clean 3 times a day and it should losen and come out easy.
We have a follow up in two weeks to check the wound site itself.

On the other hand had an appointment yesterday to start putting together his wheel chair information. He was measured and we discussed what would be best for him. So hopefully now things will move a little faster.

He will also be doing summer sessions at home for school he will recieve speech, OT and PT and a teacher some will be 3times a week and others 2 times.

We are also going to the relay for life tomorrow evening so hopefully I will be able to post a few pics over the weekend.

Picc line

Well this morning Christian's line started leaking so we called the line nurse she came and looked at it but we had to go to the ER to have a new one put in. To our surprise it was not an all day wait we were in and out with in 3 hours. So hopefully this one will last until his meds are finished on the 15th.

Update

So we have been home for a few days now and so far has been crazy with trying to get everything in order and making appointments. Thankfully he is off one of his meds as of today.

We also wanted to say Hi and we miss you our family from Lebonheur in Memphis. And to our new ependy family.

Christian is doing pretty good today he wanted to go shopping :) He wants to eat so hopefully sooner then later he will be able to. We have our appointment for ENT in a few weeks so we will see what they say.