Time For Walking....

Today Karter's walker arrived! We had it fitted this morning and Karter spent some time in it then and after lunch. There were far less tears this time as there were when we first tried it out two months ago. We have had a demo model on loan for the past two months and Karter has been using it almost daily since.

Although he is not booting around the house on his own YET, we are really proud of his accomplishments. Right now, we are focusing on standing and weight baring, of which he is doing very well. Generally, I put on his favorite show and lock the walker in position so that he can bare weight on his feet and through his hips. He has worked his way up to about 15 minutes before he gets upset.

When the walker is not locked, he will push himself backwards with his feet. This has improved greatly since his orthotics arrived. They allow him to not drag his feet or turn them under when standing - they have made a world of difference.

Karter will be taking his walker to preschool with him. This will allow him to participate in activities such as the water table, standing in circle time and outdoor play. We are really excited about that for him.

Ever since the first day of preschool, I told his teacher that our goal was for him to walk across the stage at graduation. That is what we are working towards. Assisted, unassisted, backwards or forwards, we are working on that special walk at the end of the year.

I wanted to share something with you. This morning I had a dream. We were somewhere very public. The entire family was there as was his Supported Childcare team (physio therapist, Childcare consultant and various others on his team) At one point Karter was in his walker. We were trying to get him to stand and he was doing well. For some reason, I had left him for a moment with his team. I came back and he was standing on his own. I left again and came back and they were looking for him - he had decided that he was going to walk. He got up and that was it, he had made the decision and was walking. I remember thinking "I knew it was only a matter of time". I woke up smiling and thinking that it was no coincidence that I dreamt that the morning I knew his walker was arriving. I am always thankful for the little reminders that "it is only a matter of time". How much, we are not to question but the assurance is there that it WILL happen.

Karter's 4th Birthday

We celebrated Karter's birthday 'Mickey-style'. It was a beautiful warm afternoon and we were so blessed to have our closest friends and family join us to celebrate Karter. This year has been one worth celebrating!

The menu for the kids included Mickey shaped chicken nuggets, fries, veggies and for dessert Mickey cupcakes and for the adults chicken and various salads. The kids played in the bouncy castle (care of J & K) ran through the sprinkler, enjoyed water guns and of course the Mickey pinata. It was a hit for all the kids and we were thrilled to spend time together with everyone.

Here are a few pictures of the festivities

 

 

 

To my precious Karter:

As I say to you all the time, you are such an inspiration. Your ability to overcome adverse situations is commendable. You go with the flow and you smile all the way through it. Your infectious laugh brings us to tears and your courage is something not many people have. You are an over comer and this year has been a big one to overcome. You faced neuro-surgery for the second time and astounded us with how well you did. We have deemed this year one of 'celebration and expectation' and little man, you blow our minds daily with what you have accomplished.

The favor that rests on you is something that can only be explained as God given. Although you have never spoke one word, just who you are has spoken louder than a 1000 words. You are so loved by so many and you are in the prayers of people all over the world. As your parents we could not be more proud to call you our son. We love you so much and we look forward to the next year ahead.

Our prayer is that we see you accomplish things far beyond the realm of normal! You have been equipped by the Lord with all you need to succeed and we are excited to sit on the sidelines supporting you and cheering you on as you accomplish great things. I love you Karter James. Thank you for coming into our lives 4 years ago and making us into the people we are today. You are one in a million!

Depending

I found this article this week and it was such a nice reminder for me.

Prov 16:3 Dependence upon God yields Success.
Prov 16:3 (KJV) Commit thy works unto the LORD, and thy thoughts shall be established.
Prov 16:3 (NIV) Commit to the LORD whatever you do, and your plans will succeed.
Prov 16:3 (NCV) Depend on the LORD in whatever you do, and your plans will succeed.

"Commit" (16:3) literally means "roll." It calls the reader to roll his burdens onto the Lord's shoulders; they are not too great for him. [New Bible Companion]

Lay the matter before him by prayer. (Matthew Henry's Commentary)

When a man recognizes his own need and turns to the Lord for guidance and help in every act and decision, then the powers of heaven come to his aid and enable him to carry out the decisions reached under the influence of the Holy Spirit. [SDA Commentary]

There are different ways to fail to commit whatever we do to the Lord. Some people commit their work only superficially. They say the project is being done for the Lord, but in reality they are doing it for themselves. Others give God temporary control of their interests, only to take control back the moment things stop going the way they expect.

Still others commit a task fully to the Lord, but put forth no effort themselves, and then they wonder why they do not succeed. We must maintain a delicate balance: trusting God as if everything depended on him, while working as if everything depended on us. Think of a specific effort in which you are involved right now. Have you committed it to the Lord? [Life Application SB]

When we want God's direction, there are no halfway measures. There will be times when we slip back, stumble and sin. These times grow fewer as we seek and gain His direction. Progress comes when we place our full confidence, our will and intellect, in the Lord. Does this mean God wants us to stop thinking, stop being individuals, become a robot? God forbid! He doesn't expect us to short circuit our own mind. He just tells us not to go to that understanding with the wrong assumptions. It is simple. Place your confidence in God, wholly, on a matter. (To do so, you will have to pray and search His word to find out what it has to say on that matter.) This is putting our thoughts before the Lord and His Word. As we do this, He will give us the direction we need. Decide today to pay due respect to God in all that is done. He will direct decisions, judgments, and actions. And we can count on growing in our walk with Him. [In His Time; Walk With Wisdom]

Dependence is something that does not come naturally to me but it is something that I am learning. In the past years, we have had to depend on God for many things. When it comes to Karter, we have been able to look back and see how there has never been lack for anything that he has ever needed. We depend solidly that God will provide. Not just for Karter’s health needs but also for the equipment and other things that he requires. Not only has Karter never gone without what he has needed, but more than, the best has always been provided for him.

We have been praying about how to acquire the extra money to pay for the walker that we had selected for Karter. It is a substantial amount of money, far above what we could “just cover” out of pocket. Believing that Karter would have that walker that we chose for him, we continued to pray and look for ways to find the extra funds.

This week, someone contacted me to tell me that they were sending the money we needed to cover to amount for Karter’s walker. As they shared with me, I went to tears. I had no words to express my gratefulness, I was absolutely floored. As the day went on I was so humbled by the fact that once again provision was made for the things that Karter needed. He does not live in lack but in blessing. God knew when he gave Karter to us that provision would be made for him and He proves that time and again. So we continue to depend and He continues to provide and show success for our plans. I will leave you with the last part of the article:

Dear Child,

I watch you labouring and fretting and anxiously striving to achieve things for me and my kingdom. Hear me. Your work is not my primary concern. Your work is now, has always been, and always will be secondary to your relationship with me. What you do will flow out of your relationship with me as irrigation streams flow out of a deep, clear, powerful river. The river (the relationship) will set your motives and supply your strength. Then your work will flow forth to honor me. Any time you allow your work to come ahead of your relationship with me, you risk working against me and my purposes.

Draw near to me and rest. Seek my will at every small turn. Listen for my voice. Be filled with my Spirit. Then work with joy and abandon!

The Source of your power, God

Beautiful Song, Wonderful Day and lots of Hope

Today we tried out walkers for Karter. I had mentioned to you before that I was really looking forward to this day. First are foremost, to see if Karter would be able to even stand in one; but also to see what things looked like in way of what how much money we would need to raise in additional funding for Karter's equipment needs.

As an "A Type" personality, I need to know all the options in order to make a formulated plan of action. I am happy to say, we found a walker that will be suitable for Karter; even better, it will also double as a stander for him! It will provide enough support for him in the hips to build the strength he needs to walk and with 1 price tag!!! I am happy to report that the amount we will need to come up with is very little in comparision to if we would have had to purchase both the stander and the walker. I love how the Lord goes before and makes the decisions so clear and easy!

Although Karter did not just get in and walk away (not like I actually thought that would happen) he did put weight through his legs and move the walker forward at times. This was so amazing to see! He definitely complained at the level of effort it took, but in time, I can see him really loving the independence and different position to see the world in.

The walker is open in the front giving Karter and his peers the ability to participate together without the interference of equipment or the restaint of having to hol don with his hands. This is something that is very important to this Mama (especially with my Preschool Teacher background). Karter's abilities can limit him in the classroom and in social settings, I feel so strongly that I do not want to put more limitation on him with his equipment. That was just as important today as when we looked at wheelchairs last year. He needs to be at the same level as his peers and needs to be able to maneuver in the same spaces that they can. The walker met all those criteria.

I took a picture of Karter in the walker so that you could see what he looked like and what it is that we will be getting for him.





After preschool and a quick appointment to see the chiropractor (which on a side note mentioned how amazing Karter's head control and neck strength was - the best he had seen to date), we came home for lunch and Karter headed off for his afternoon nap. That for me means time to get to work.

As I was going through some new songs for arranging, I came across this song called 'Before The Morning' by Josh Wilson. I had heard it a number of times before on the radio and it did catch my ear a bit, but the article had a link to a video about the story behind the song. This spoke to me and gave me such a precious Forehead Kiss From the Father. Just another reminder that the journey is all part of the miracle. The most beautiful quote in the video says "If we can trust God with our eternity, we've gotta trust Him with our now" WOW - that's good and so true. As a Christian, I have never questioned my eternity. I have a very big assurance that I know where I am going after I die. But why at times,is it so hard for me to trust that the same God that will take care of me in Eternity will also take care of ALL my needs here on earth.

If you have a chance to watch the full video, I don't think you will be disappointed, maybe even grab a tissue just in case ;-)



So it has been a great day. I am once again filled with hope in the anticipation for our future. This is just another step in this years journey of "Celebration & Expectation".

Tomorrow we head to Children's Hospital for our six month "check-in". I am anticipating great news from them as well.

A Couple Of Big Weeks

We have had a few really big weeks around here. Last week was Wedding Week and this weeks has been full of appointments and a wonderful day at the Boat For Hope

This past week we met with our Occupational Therapist. She came to see us here at home, which she has not done in about 6 months because most of her visits are at preschool. This time however, I has asked her to come here so we could chat a bit about feeding and moving things along to the next level.

Every six months assessments and goal setting is done with each of Karter's therapists. This was the end of one assessment period for Karter. Each time we look back at the goals set and extend them or modify them as needed for the next six months. This time however, I am happy to announce, Karter met his six month goals. Honestly, I think this is probably the first time that we have set goals and actually met them in the time period. This was a time of real rejoicing for me.

Karter will be starting to move towards chewing and processing more solid foods in the next months. He has started to really bite on his spoon and his toys and when I put some foods in his mouth he will bite on them and break off a piece to move around in his mouth. I am excited to move into this next stage with him.

This upcoming week is also a big week for Karter. We have a 6 month check in at Children's Hospital. And on Tuesday, we have an appointment to look at walkers (and try out the stander again that we have chosen if need be) for Karter. We will be looking for something to assist him in the standing position and hopefully in time teach him to move his legs enough to get himself around independently. I am quite excited about this.

As I mentioned previously, we do get some funding towards a walker or a stander for Karter, however the other portion we need to come up with. The two together cost about $10,000. Our funding will give us $3200. My prayer is that we can find something that is suitable for Karter that will work for both standing support and walking support. That would mean we would only need to purchase a walker and find the additional funds for that. Please pray that we would find the suitable solution for Karter to best assist him and his needs. Once we have decided what his equipment needs will be, I will start the application process for grants.

At the same time, we will also be applying for grants towards a wheelchair van. This is obviously a very large purchase and something that we are just starting to research. We are praying our way through this one and are trusting that our needs will be met as they have so many times in the past.

Here are a few pictures from the last few weeks and all the fun things that have been going on.

This, that and Disneyland

March 25th was the last time I posted - wow - ok clearly I lost a month somewhere ;-)

Life has been full of new fun things and normal everyday things. Karter resumed riding in March, as was mentioned in the last post. He generally complains when he goes; it is a lot of work for him to hold his body on the top of that horse. We are pushing through it though as we think it is a really beneficial activity for his core muscles and his muscle tone. He does like it when they ride outside and with the weather cooperating these past few weeks, he has been able to be outside for a good portion of the lesson.

It has been a little entertaining to see Karter protest. As soon as we turn onto the street where riding is or get into the parking lot, my happy boy turns into a bit of a complainer. The riding helmet goes on and he gets upset with me. It has been nice to see that he is starting to tell us when he likes or dislikes things.

Karter continues to verbalize; lots of sounds and different tones have started to emerge. He has even started to yell a bit! He usually responds when we ask him to say "Ya", he will repeat that back to us. If I ask him to say "Ma" or "Mama" he just laughs at me - little monkey!

He is still rolling a lot to the left side to grab at objects. He now will remain there and play instead of rolling and immediately retuning to his back. He is getting quite strong and confident on that side. He gets about 80% of the way over to his tummy. However when I try to get him to play on his tummy he still really protests. One day he will love it...

Karter will at times plant his feet, while lying on his back, and lift up his whole body. That encourages me a lot because that is weight baring through the feet, which will really help with learning to stand. I notice it also when I am changing his bottom. He will push and lift up so that I can pull his pants up. Repetition in routine is something that is the key to learning.

I think that he is starting to get a bit frustrated with his lack of mobility. He tends to get bored in one position and so I am finding that I move him a lot more than I ever did before. Now that things have settled a bit more around here (since the move and surgery) I am not starting to get back into being more active in his equipment search. We need to get Karter a stander and in time a walker. There is some funding available for these times, but the reality is, that funding will only cover about 30-40% of the cost of the two items. So I am exploring fundraising options again and will start putting applications together for various Children's Charities.

On that same note, I have confirmation that Karter does have one to one support funding in place for preschool next year. If you recall, we found outside funding for Karter so that he could go to preschool this past year. The government was unable to help us with that this year. I am so thankful we did explore other options because preschool has been such a good things for Karter.

Karter had been struggling a bit with his sleep since January. He will wake in the night and early in the morning. While we were away my SIL told me to try giving him calcium at night. Apparently, that helps with growing aches and pains. I started to so that and the night waking has stopped. The early mornings still continue at times, but they too have gotten a lot better this past week as we have started to purposely pray peace over him; I wonder if he was also having bad dreams.

We had the great gift of a trip to Disneyland this past month. My parents took our family and my bothers family for 6 days. We had a wonderful time! All the kids really enjoyed themselves.

I had really wondered before we left how Karter would enjoy it. I did not know if he would just be "along for the ride" or really participate in our time there. He definitely experienced the latter. There was so much to take in, so much to stimulate him and he just loved it. I think "It's A Small World" was one of his favorites, so we did that one 5 or 6 times - much to Grandma's delight! He loved the parades and the marching bands. He even enjoyed Splash Mountain.

Disneyland does a wonderful job of being inclusive of children with special needs. Most of the rides in Disneyland are not wheelchair accessible, so you have to enter through the exit. This was wonderful because we did not have to wait in most lines.

Karter commanded such favor. We had three people stop and give him their Mickey Mouse balloons. Another person gave him a teddy bear and one of the staff at Disneyland moved us to the front of the VIP line for the Aladdin show; we had seen her the day before at another show and she took a real interest in Karter there, she told us that he touched her deeply. I know that it is something much greater that is within Karter that draws people to him. Someone even commented to us "He does not even need to say a word, his face says it all"

Here are a few pictures of Karter in Disneyland:









(I just love the look on his face - like he is saying "Really, another stupid picture?")

As the months continue to go by I am always amazed at the grace, strength and patience that has been bestowed on us from our Heavenly Father. Karter has been one of the greatest gifts ever given to us. Although life with Karter presents itself with challenges, hard times and different realities; more often, those are over shadowed by the joys, precious moments and wonderful miracles we are privy to on a daily basis. Yes, life is hard and it is not always what we signed up for, but sometimes the things that best shape your life are the ones that you never expected.

We continue to stand on the promise that there will be a day where Karter will be well and life will look much different than today; however we accept with privilege each day that we continue to walk this journey. God is good in ALL things.

Just totally amazed!

And another month has past without an update; I really do try you know!

Karter is doing really well. He is growing like a weed, one wonders if he will even slow down ;-). This past month he has started to verbalize. It sounds like he says "Ya" and something along the lines of "Hi". We have been asking him questions and we think he is answering "Ya" back at us, purposeful or not, we are thrilled! The other day in the van, I was singing and he started to verbalize along with me, like he was joining in my song.

He continues to roll to the left side, grabbing for whatever it is that he can get. He has become very purposeful in grabbing with his right hand. The other day as I sat at the computer working, he kept grabbing at my keyboard hitting keys. I was Im-ing someone from work and Karter hit the zzzzzzzzzzzz key and before I realized it, I hit enter; the person on the other end thought I was bored with them. He grabs at my magazines and puts them in his mouth and then laughs at me. He has developed quite the little personality as of late. What a joy!

Today Karter started back at riding. We took a break during the Winter session so he has not ridden since late November. I thought it was going to be a total bust because he could not keep his eyes open in the van on the way there. But once he was on the horse, he did really well. No real crying, a bit of whining from time to time, but that is normal for him when he has to work hard. I noticed that he was sitting much straighter this time and that his head was not bobbing up and down as much as it normally does. He was even looking around from side to side instead of looking straight out front.

After riding we proceeded to go to preschool, as we normally do on Thursday mornings. I told the teachers that I would come and get him early since I knew he was tired and did not think he would last for the full class. I returned an hour and 15 minutes later to hear that he was doing amazingly well. I saw him sitting in his floor seat in the front row of the circle time, dancing to the songs and happy as can be. Boy that warmed my heart! Trista, his support teacher did not even need to be in circle with him, he was independently participating with the group - WOW! Earlier in class, I watched as he sat in a group of boys, one of the teachers brought a box of colored blocks over. As soon as he saw the box, he was grabbing for what was inside. I was later told that the boys were all building the tower from the blocks and then M would help Karter knock the tower down. I love how the kids include Karter is their play.

It is truly amazing to wake up each day expecting great things. Karter has done so well these past few month and we are both excited and so proud of his progress. Thanks for keeping both Karter and all of us in your prayers, we feel them each day.