Just a little note

I thought I would post a little update. We are still on for surgery on May 18th. However, Karter is still struggling with his bronchial infection, he is quite wheezy and is coughing up quite a bit of mucous. We are finished the antibiotics today and will revisit the paediatrician on Wednesday. Because of all the coughing, Karter is having a hard time keeping his fluids and his medicines down. He gags and tend to bring it up. This is obviously something that we are watching carefully. He is not eating solids right now either, I suppose when I feel sick I don't want to eat though.

We are thankful that he has returned to sleeping through the night and taking regular naps, because of his difficulty breathing, he would wake frequently...oh and also becasue of his two new teeth...they are so cute!

On Saturday morning Karter was rolling over and over from his back to his side and then to his tummy. We were thrilled! Then on Sunday it was like he forgot how to do it. We are finding this quite frustrating and discouraging for both ourselves and for Karter. It is like he learns something new and then forgets and has to relearn it all over again. Our prayer for him is that he is able to retain what he learns from one day to the next. It is hard to watch him long to get up and play with his sister. You can see it in his eyes how he just wants to go. It just breaks our hearts.

Our prayer for him in that he is at very least rolling and sitting by his first birthday. Please pray along with us for complete health to be restored to his body both from this past sickness and also to his brain. We do well most day, but there are the odd days that we struggleand feel overwhelmed with the magnitude of Karter's issues. Please pray for strength for us and pray that we would continue to choose to be positive and thankful in all things.

We rejoice, especially in the little things!

This week has been a great week for Karter. He has definitely found his voice again...LOUDLY! And he has started to roll to his side now. He is happier than I have seen him in months; his little hands and feet just won't stop moving.

For those of you who are not able to see him on a regular basis, I wanted to share with you two progress videos. One is him rolling to his side the other is his talking.

Thank you Lord for your faithfulness. You know just when to encourage us and give us that little push to keep pluggin' along.

The new date for surgery is...

Friday May 18th.

I was a bit discouraged it was so far away but they just couldn't work everything out and get things in place fast enough to do it this Friday. The surgeon is then away the last few weeks in April and then the other surgery's that are scheduled in May are just as important as Karter's and cannot be bumped. So that leaves us waiting for four more weeks. There is always the possibility of a cancellation to get us in earlier but that is a slim chance.

So we wait and see. And in the meantime I have to believe wholeheartedly that God has a plan and it is a good one. Maybe He just needs more time to complete the healing in Karter's body. Maybe there are still a few things Kurt and I need to learn and journey before, who knows. One thing I do know is that in the past six and a half months God never showed up too late, He was always right on time, even when I questioned it and wondered where He was, when each part of the journey played out, His timing was perfect and along with it was always a wonderful moment of realization. Beautiful really when I look back at it all.

The nice thing is we have a little breather here, to "just live" for a few weeks. Maybe go on a date or two, play at the park, plan some family days without the worry of appointments and other disruptions. God knows what we need and when we need it, so there is no need to ask why. The main thing is to get Karter well and keep him well until after his surgery date.

I wanted to also mention that Karter has not had a seizure since Thursday night, this is the longest we have gone in weeks, so I am thankful for that. Also, the past three days he has been so happy; happier than I have seen him in about four or five months. He is once again vocalizing all the time and moving around like crazy. He rolls to his side at times and has gained amazing strength in his neck and head. We are thankful for each little milestone, no matter how slow it may approach.

So we will continue to journey and we will continue to draw our strength first from the Lord and then through the prayers and support of all of you who love us. There will be a day when things will look (for lack of a better word) normal. God is faithful and He is the source of all good things AMEN!

Thank you all for your support, encouraging words, phone calls, emails, kind gestures etc. You are the ones who hold us up and carry on the hard days and you are the ones who rejoice fully with us on the good days.

Blessings on you.

There may be a slight possiblity...

That Karter could have his surgery this Friday. Children's Hospital called and said that they may be able to move a few things around to be able to get Karter in by the end of the week. It hinges solely on whether he is well enough by then. I am suppose to take him to my family doctor Monday morning and have him take and look and listen to Karter and see if he thinks he is on the mend and could be better by Friday.

The Ventolin and Pulmucort seems to have loosened everything up, so I think that is a good thing, but he still sounds very rattly and wheezy to me. I would think the chances are small that he would be well enough, but I thought I would mention it so that you can pray for a quick recovery for Karter.

All things in God's perfect timing...that is what I keep telling myself when I get impatient...which believe it or not has been a lot this past week!

Surgery has been cancelled :-(

We have just returned from Children's and they confirmed that the surgery has been cancelled at this point becasue of Karter being sick. Apparently, they are concerned that if he is put out for 5 hours that there could be complications afterwards with his breathing.

We are feeling surprisingly at peace with the whole thing. Looks like the main thing is to get him back to health and then we will look at surgery again at that point. It could be as soon as a few weeks. We will keep you posted.

Thank you for journeying with us on the very up and down road...anyone else getting car sick?

Karter's haircut

Shery came over and cut Karter's hair tonight. She did a great job. Karter slept through the first half of the cut. He woke up for the right side and back, but did remarkably well for that, just a few complaints.

I will update the BLOG tomorrow afternoon when we get back from our appointments.

What's going on Lord...?

So this morning I wake up, get Karter and he is coughing and congested. Normally, I would cuddle him and gear up to get through a few days of being sick. This morning however after a quick snuggle, I sprung into action faster than any other given morning.

I called and left a message with Children's Hospital first to see what I needed to do about this whole thing, especially with surgery on Friday. They later confirmed that I should see my family doctor. So I called my family doctor and he saw him at 9:30. He listened to Karter's chest and said that is sounded like he was a bit wheezy. He prescribed Ventolin and Pulmacourt (often used when treating asthma)to be administered through a nebulizer (a machine that attaches to a mask to disperse the medications) and then sent me off to the hospital for a chest x-ray. Karter had pneumonia in January, so he is more likely to have it come back than a child who has not had it at all.

After returning from x-ray at the hospital, I talked with the neurology nurse again at Children's and she said that if he had no fever and did not appear to be getting worse we would still see how he is tomorrow at the pre-admission clinic. The anesthesiologist will make the final call as to if he feels it is safe to proceed with the MRI tomorrow and the surgery on Friday. She mentioned that they only postpone surgery if they are really sick. I guess worse case scenario, there is risk of him not being able to get off the ventilator for quite sometime if there are respiratory issues prior to surgery.

My family doctor called to give us the results of the chest x-ray around 3:30 this afternoon. It appears that the x-ray indicates an area in the upper left lung that could be the start of pneumonia. It also could indicate an area of irritability from aspiration. Because of Karter's low body/muscle tone, he has a bit of reflux, which means he sometimes has musus that collects in his throat making him sound gurgley. Sometimes, children can aspirate a bit on this and it can irritate the lungs. This is possibly what we are seeing. The doctor is reluctant to put him on anti-biotic at this point for a few reasons. The first being that he feels it may not really help at this stage, Karter has no fever or other indication that he is sick. Also if we do put him on the meds, it could induce diarrhea or other effects that would make things complicated for surgery. So we are going to wait.

My next step was to call Children's yet again. They agreed with our doctor and still feel like it is worth us coming in to see them tomorrow and they will make the call then if we are going ahead or not with surgery.

I have to say I am really wondering what is going on. We have always said that we will trust no matter what and we will this time too. It just seems hard to understand why the surgery would be bumped from next Monday to this Friday just for him to get sick and then have to possibly postpone yet again. I mean "God are you trying to tell me something because I am listening, you have my attention for sure!"

If Karter is suppose to have this surgery, I would ask that you please pray along with us that it moves forward this week. I cannot imagine having to wait again for weeks. Kurtis' mom has come down from Vernon to help us out with Paige, Children's Hospital has moved countless surgeries and schedules around to accommodate Karter on many occasions, especially to get him in this week for surgery. And if I was to be totally honest, I would have to say that I need this to move forward too, I am so exhausted with waiting and not moving forward. The anticipation of it all really wears me down. I know Paige is sensing something too; she is really clingy, whiny and over emotional. I want this done for her sake as well, she is the one who really has had to endure a lot. I want some stability for her here at home, to be able to enjoy life again, go to the park, the zoo, the beach and just have fun, without appointments and changes of schedules interfering all the time. So pray for her as well, that this isn't too hard on her either.

I will keep you posted as soon as I find out exactly what will be happening.

SURGERY DATE CHANGED!!!!

We just received a call from Children's hosptial and Karter's surgery has been moved up to this Friday rather than next Monday. It appears that there was a change in the schedule for the OR and they bumped other people to get Karter in (otherwise it would be May before we could get another date)

We will go as scheduled to our appointment on Thursday for pre-admission and at the same time he will also have his MRI. We will then go in the following morning for 6am, his surgery will be first thing in the morning.

Please pray that Karter stays well. I saw a bit of a runny nose today and he has been sneezing. If he becomes ill, they will postpone his surgery.

We have such peace about the whole thing. God ultimately is in control of all things. We do not have to be concerned or worry about any of it.

I will try and update you one more time with exact times of the surgery so that you can cover Karter, the surgeon, doctors and us in prayer during the whole thing. Again thank-you for your continued support, we love you all so much.

With all that has happened with Karter, yet another thing to worry about is the shape of his head. It is rather flat at the back. That is due to the fact that for three months all he did was lay on the left side of his head due to all his uncontrolled seizures.

Anyhow, the physiotherapist and I were talking last week about things he could do that didn't leave him on his back all the time. She suggested putting him in the sleep positioner and letting him play on his side. That worked good, but I took it a step further and we started to sleep him on his side. That way he will have about 15 hours a day on his side, hopefully that will round out his head Anyway, these are some pictures of him sleeping, I just thought he looked like such an angel, I just had to take some pictures and share them with you.

The upcoming appointments

Karter will have a pre-admission clinic next Thursday at Children's Hospital. There, they will have us meet with the surgeon one more time to have any questions we may still have answered. Also, that is when we will sign the consent forms for surgery. Karter will have blood taken...not sure for what though...

On Friday Karter will go for an MRI. They will use that to make markings on his head for surgery. That helps them locate the right positions etc. We will then also take a tour of the ICU with the nuerology nurse.

Other than that, Karter will have his first haircut on Thursday night, According to the poll, it looks like he will be getting a faux hawk :-)

I will keep you posted as to any changes over then next week.

His surgery is on the 16th first thing in the morning.