One Month Post-Surgery

It amazes me that time has flown by so fast. I spent a good portion of this morning at church testifying to many people who would ask, how amazing Karter was doing. Although I was able to verbally tell them, there were so many that saw the difference right before their eyes.

Karter has really gained the ability to focus so much better. He responds immediately when his name is called and will pay attention to whoever is calling him, he makes amazing eye contact.

When playing with his toys and grabbing them, he gets it first with his right hand, but the left hand is following quickly after to support his holding the toy. Although he is not very accurate yet, that left hand presurgery, would be flailing up in the air with no real purpose. Now it follows what the right hand is doing.

Karter has started to make a few sounds. If he is unhappy with something, he will make a whining sound that sounds like "Maaaaam". I am saying that he is calling me ;-). He has become very aware when I am out of the room or if he has been left alone. He really does not like that much.

Karter is eating better. He has been drinking out of an open cup because he would not suck from his sippy. Tonight however was the first night post surgery that he managed to drink an entire 8 oz out of his sippy by sucking - Praise The Lord!!!

The biggest news...Karter has learned to roll to his side to get a toy. Yesterday he rolled completely over two times! We have placed his favorite toys over his left side, out of his reach. He will roll over the grab them and will play with them. This is the biggest milestone we have seen from him and we are so excited!!! Here is a video showing him doing just that.



This past Wednesday we took a trip to Children's Hospital so that Karter's surgeon could check his swelling. He right side is very swollen still and I was concerned. The verdict...everything is completely normal. The excess fluid can take up to 3 months (sometimes even longer) to absorb into the body. It is nothing to worry about. Although it looks like it could bother him, it is said to not cause any discomfort.

Other than the swelling, Karter has recovered fully. The scar has healed well and almost off the stitches have dissolved and are gone. We are so excited and feel such an intense anticipation for what the future holds for Karter. He has been seizure free since surgery. This is such a miracle and such a beautiful gift! We continue to look forward to many more miracles before our eyes.

Here are a couple of pictures of Paige and Karter from the other day while they were having a PJ morning.

What does today look like?

I took a few pictures today while Karter was having supper. I needed to take some shots so that I could send them to Children's to show them how Karter's swelling looked. Normally, I would have had a hard time getting Karter to even look at me while taking a picture. Today, I could not get him to stop looking and smiling at the camera...what a nice change!







The most noticable changes in Karter have really been in his concentration, eye contact and responce to us. He smiles all the time and has resumed his infectious giggle which warms out heart beyond words. There have been many other little things that we have noticed as well. We count each things as part of Karter's healing

Karter has regained the majority of his appetite and is eating well. He does however play favorites and will sometime only take his food from Mommy; what a little monkey!!!! The drinking is slowly improving. He is drinking from a cup and has started to drink from his sippy cup from time to time. We are thankful for each step to recovery, he is doing so well.

The swelling is still there on the right side. We have been told that it will take a minimum of 3 weeks for the swelling to go down. We are praying that the swelling will subside quickly.

Karter's incision site has healed nicely. In case you might want to see a pciture of it, here it is.

1 week post surgery

Who knew a week could fly by so fast. I have been meaning to get an update up for 6 days. We spent last week just catching up and getting through it. We are so happy to have the support and prayers of all of you. That is what we were drawing strength from.

Karter was struggling with both his eating and drinking last week. To date, he is eating well however the drinking is still a bit of a struggle. We are pretty sure that it hurts his head to suck on his sippy cup and so he avoids it. I was using a syringe to get liquid into him, he was hating every moment of that. The past two days he has been taking liquid from a cup. This is a bit messy, but it works and he seems to really like it.

Karter went back to preschool today. He managed to last an hour and a half. I think he was happy to be back with the kids, but he did tire fairly easy. We will try again on Thursday and see if we can make it a bit longer.

Karter has been sleeping really well and has been pretty happy. We are very thankful for his quick recovery, he is blessed.

I will try and keep current updates coming. Next week is production and the following week we start the renovation on our new place. So we are gearing up for a pretty busy season.

Forehead Kisses From The Father - Surgery week

I have spoken about forehead kisses before on our family blog.. But over the course of this past week, I have been very aware that there have been many more kisses from the Father.

Now that we are home and life is slowly returning to normal, I wanted to take some time to really share with you a number of things that happened this past week that were so precious to us.

Throughout this past week, there is no denying that the prayers of the people around us have sustained us. But I felt like I wanted to make sure that first and foremost, God gets the glory for EVERYTHING that has transpired over the course of this past week. Because without His intervention, this would have been a very dark, painful and difficult week.

I would be lying to you if I said there were no tough moments; there were a few. But for the most part, there was this peace that followed us everywhere we went *kiss*.

As we waited in the waiting room, I was not looking at the clock wondering how long it had been or how much longer it would be. Rather, I found myself praying for the other families. The family who's infant was having heart issues and would go in for surgery the following day. I prayed for them and their little one. I had the luxury of knowing that there were many prayers sent up on Karter's behalf. *kiss*.

It was about 6:15 when Dr. H, the neurologist came out from surgery to let us know how things were going. Her words chosen so beautifully. Although there were a few surprises in their finding (the fact that his abnormality did span into the sensory/motor cortex) she spoke word of affirmation and encouragement to us. *kiss*. There was no caution in her voice or in her words, more than that there was extreme optimism. *kiss*. She spoke the words that we had prayed; that the surgery would be easy, without complication and would be successful. *kiss*

We were told that because of how invasive the surgery was and how intensive the monitoring was, Karter would not move his left extremities for up to a week. We were also told that his vision in his left eye would be off for a few days and that we would find that he would only look right for a time. Karter came out of surgery kicking all his legs and arms *kiss*. Also, he rested his head and eyes to the left more often than to the right. *kiss*. In the words of the doctor "This little guy is defying all the odds, I love it when I am proven wrong" *kiss*. Those were words that have been spoken over Karter many times. That he would defy the odds and would overcome.

One thing I had remembered from the previous surgery was that they waited a little too long to give him pain medication, post op and he was in a lot of discomfort for about an hour or so. This time, Karter rested comfortably from the time he left the operating room. There was such a peace about him. He even opened his eyes a few times just to be assured that we were there. *kiss*.

When we returned Saturday morning, Karter was in ICU and completely awake, moving around with no swelling. We were astonished at how well he was doing - again there was such peace that rested in that room *kiss*. When the doctor came to see him that morning, she too was extremely surprised. Here words full of encouragement and hope *kiss*.

As the day went on and the swelling started, a beautiful rest fell over Karter. He was not bothered by the fact that he could not open his eyes, he just rest in the arms of Jesus. *kiss*. I have been told that in those circumstances, most children are very irritable. Karter slept for 2 and a half full days until the swelling went away. *kiss*

The question that the doctor asked each time she saw Karter was "Any seizures?" I responded each time with a "no". On Sunday evening, she looked at Karter and then turned to us and said "This little boy is a miracle". *kiss, kiss, kiss* I looked at her and said "I receive that".

The final morning before we left the hospital, the surgeons came in to see Karter and were so pleased with his progress, 2 and a half days (60 hours) post surgery he got the ok to go home. *kiss*. When the doctor came in for the last time to see Karter, she spoken beautifully over him. She told us that she was "so hopeful for him". That we should see increase in him. In his abilities and in his development. Those were specific prayers that we had for him. *kiss*

Although there were a few moments on the Thursday before surgery that were tough, there is no doubt in my mind that the timing for this surgery was perfect and was intended to be as it was - not by mistake - but for a specific purpose.

We love our neurologist, she has done amazing things for Karter and we are blessed to have her on our team. She was away in China this weekend. Dr. H, who spoke such beautiful words over Karter, would not have been the one to walk with us through the surgery days had our regular neurologist been there. I will not discount our regular neurologist in any way, but God intended for those words to be spoken by Dr. H. Such a gift *kiss*.

Karter is an over comer, we have spoken that over him since day one of this journey. As I have watched him these past few days, I am awed by how incredible he is. How patient, tolerant and accepting he has been against all his adversities. I watch him trying to roll with all the strength he has and I am amazed at God's goodness. There are so many more things I could say about this. I just wanted to be able to share with you the little things that made this week such a God given gift for us.

We have turned the page. We are starting a new road. We are excited for the new things that are ahead of us and are thankful in all things that have transpired over the past few years. God had been faithful. He is the one who has brought us to this place and without Him, we would be puddles of emotion on the floor.

I wanted to leave you with these pieces of interesting information. After surgery, and all the testing they did on Karter's brain, we were told that there was so much Epileptic activity happening in that right lobe area that Karter was in constant seizure. Although we did not see it physically, that was what was happening. The result of that was lack of ability to move forward and develop. The doctor said to us "he did not have a chance to develop with what was going on inside his brain". When I asked he later how much of the tested brain, that showed that activity, was removed. She responded with "80%". She went on to say that it is possible that the pathways to the other 20% of abnormally developed brain have been cut off - thus the reason for her optimism *kiss*

God is so good to Karter and to us

Here is a picture of Karter from today. This hat was a gift from a friend, check her website out here Thanks JM!

Our First Day Home

We were able to come home last night. We arrived home just shortly before 5 pm. Paige was at an activity and came home to the wonderful surprise of Mommy and Karter at home (It was such a sweet moment). She had a really tough time without Mommy around this past few days. She remains quite emotional and cuddly today. Although she was older this time, I think it was harder for her becuase she understood what was going on and found it quite emotional.

Karter slept really well last night. He went down around 7:45 and woke around 8 this morning. He appeared quite happy when he woke but would not take his morning milk cup.

As the morning progressed he became quite cranky. He would not eat or drink anything. By 9:30 he fell back asleep beside me on the couch. When he woke, I tried again to feed him but I only managed to get in a couple of bites, milk and juice were also a no go.

For the rest of the morning he played on the floor under his play gym. The greatest news though...he was using every bit of energy he had to roll over from his back. He was even starting to get frustrated when he couldn't do it. All the momentum was spinning him around on the mat.

I tried once again around 11:30 to get him to eat and drink, again without success. He appeared very tired, so I put him down for a nap at noon. He slept the entire afternoon and got up at 4:30 smiling and happy.

At dinner, I managed to get him to eat a small amount. He played again in his wheelchair and then on the floor and was quite happy. Just a few moments ago he drank a few ounces!!! Success...FINALLY!!! He is in very good spirits this evening.

We are so thankful to be at home and to resume life again. It has been a harder transition that I thought it would be, to come home. Because there was no time to prepare for this post surgery week before Karter's surgery; the fridge and pantry are bare, the underwear drawers empty and the inboxes are brimming. It has taken the entire day to feel settled at home. It was a little weird to go from "hospital/surgery mode" to packing the snack bag and doing home reading to doing laundry and getting back to work.

At any rate, we are thankful and so reflective about the amazing things God orchestrated this past 5 days. I hope to take some time later this week to sit down and share with you all of the "God Moments".

Post Surgery - Day 3

Karter's swelling peeked around 3:00 yesterday. By evening, it appeared that things were already starting to subside. Karter had a great sleep. He slept through until about 6 am when he started to complain. I got up to see both his eyes were open! Also, he had soaked completely through all his clothes and bed linens. After changing him, he went back to sleep until 8:30.

Around 9am, Dr. Steinbok and his neurosurgery team came in to see Karter. They are thrilled that there have been no seizures - we are too! He told me that he was happy to let us go home this afternoon as long as Karter is taking some liquid. So we are preparing to go home. The IV has been taken out and the codeine will be weaned this afternoon. He will go home on Tylenol.

He is lying on the bed right now kicking around and playing with his feet! I love it! He is already starting to return to himself. he has been awake and alert since 8:30. Sit ups smiles and the whole bit!

Last night, when the neurologist came in, she was thrilled with Karter's continued recovery. In a room full of visitors she said "He is a little miracle boy". My soul just leaped - "I receive that" I said! So neat!

I will try and update throughout this week as we return home and continue assisting Karter in his recovery.

Thanks for your prayers and support.

Post Surgery - Day 2

Late evening yesterday, Karter’s swelling increased dramatically. Both eyes began to be swollen shut. Amazingly, he was still resting comfortably and seemed unbothered by it.

Karter had a good night. Around 8 last night he drank a full 8 oz and then again at 11:00 before we went to bed, he drank another 2 oz. His vitals with checked at 11:20 and meds were given and we went to bed for the night.

I believe they check in on Karter every hour, but vitals and meds were given every 4 hours throughout the night. We both slept comfortably and as well as could be expected without being in our own beds.

This morning, Karter has not been interested in eating or drinking anything. He is still sleeping a lot. I am not sure he has been awake more than 5 minutes at a time. He is still very swollen and cannot open his eyes. The swelling is said to subside this evening and into the morning tomorrow. He has been very peaceful and only upset when we bother him to wake, move, feed or give him meds.

We saw two of the neuro-surgeons on call this morning. They are going to decrease the codeine this afternoon stretching it to every 6 hours opposed to the current 4 hours. They still seem quite excited about Karter’s progress. I will see the neurologist later this afternoon. They are very pleased to hear that he has had no seizures post operatively. We have been told that any seizures resulting up to 3 months post surgery are considered to be the effects of surgery.

We had a few visitors last night and are expecting a few more family members this afternoon. It has been fairly uneventful in the room, which has been a nice rest for me. I am sitting and watching DVD’s and relaxing (something I am certainly not used to doing); it has been a nice weekend all things considered.

Here are a few pictures of Karter from last night and today. You can see he is very swollen and does not look like himself. He is however doing very well; he is such a trooper!

These photos are from last night:




These are from this morning, you can see how the swelling has peeked here: