A day in the Liffe of Kale sorta...

Kale's day is like most other kids. Kale get up around 7am sometimes later if I'm lucky! We change his diaper then set him on his play mat while I prepare a bottle for him. Kale still get all his nutrition from bottles. He eats about 180mls of PediaSure with about 2 to 3 tablespoons of his thickening gel. Then if its a Monday Wednesday or Friday he goes to daycare! He loves to listen to all the other kids and try watching them. On the non daycare days Kale and I do his physio stuff after his bottle a bit, stand/walk in his walker, then he takes a nap. He normally wakes about a half hour later and we do some stretches, playing, and singing. Basically Kale is like any other little guy. The only difference is that we are slowly building up his tolerance to not being held, sitting, standing, etc. Kale for the first year was an extremely irritable baby to say the least. Now, well since August he can be put down, sit in his seat for brief periods, and go in his walker. Kale also started to at least entertain the idea of solid food. Though he is still not eating large quantities of the baby food. He at least tries is, which is huge for him since he has a oral aversion. When Kale and I go on excursions to places we have to pack allot of stuff, the usual, plus his bottle, pediasure, thickener, other normal baby stuff. However like I said earlier he doesn't tolerate a whole lot for long periods so we make sure he is fed, diapered, and rested before we go places. For non-special needs kids tasks like sitting, standing, and walking may not be exhausting, for Kale sitting,standing,walking and eating solids require ALOT of concentration and work. So that's why he gets irritable when doing those tasks most times. Slowly we will get him stronger and better at these simple tasks. These are things we work on everyday. Kale has become such a good little guy now, his development has come along swimmingly and in may ways we are very lucky for his capabilities that he has.

Not only has Kale come a long way, I have as well. The unknown is a scary thing. Kale's outcome in life was so unknown and it scared me. So each day I try to step outside my comfort zone and do more with the little guy. We will get there together. I am so happy to be a mom of my little boy. Don't get me wrong I still have those feelings of "what if's" what if I had delivered a day later, what if I had delivered a hour later, what if I had delivered a hour sooner, what if I had not pushed so hard, what if I had taken it more easy, what if I  hadn't gone in to be checked twice and just went once?!?! I still think about it sometimes, and still very much blame myself for Kale's outcome, however I know whats done is done. I cannot go back. I am very Luck to have a beautiful boy like Kale. I know these things. The guilt will always be there, the sadness will be there too when I pass parks and slides, when I see kids running jumping and riding bikes. Whenever I see a kid eating a sandwich with his hands or drawing with crayons, or when you hear a kid say mom, graduate high school, drive, ski, snowboard, swim independently, or even get married. I will always be reminded and saddened by these things. But I will always be thank full for his health and how much joy he has brought into our lives. He is such a Happy little guy. And that's all we want for our kids right?! To be happy......Kale has that, so that's all I can ask for!

A side note

Sorry I havnt written, there has been power outages, and my modem broke down for a week, plus my husband came home for 5 days from work. My husband works out of town so when he is back Kale and I spend as much time with him as we can!!

Anyway I got a request to write about A day in the life of Kale, so I will be posting that one tomorrow and for next week I will be posting about Cortical Visual Impairments in babies, following that I will post about our trip to Vancouver, Pictures and all!!!! Im excited I hope you are!!

Benifits

Since Kale was diagnosed with Cerebral Palsy moderate to severe we have been abe to apply for benifits through our government. Kale receives a disability benefit that will pay monthly, and respite money as a part of the At Home Program. If we show the City that we have made improvemnts to our house to make it handicapp accessable over 2500$ we can also apply for a property tax grant to decrease our property taxes significantly. Kale has also got us a new driveway, sidewalk and ramp by applying through the Giving in Action Society in British Columbia.

The At Home Program assists parents with some of the extraordinary costs of caring for a child with severe disabilities at home through a range of health supports and services. It provides assistance in two main areas:
Respite Benefits allow parents to choose appropriate care options for their child and family.
Medical Benefits provide a range of basic, essential medical items and services.

Not all children who apply will qualify and not all who qualify will get both benifits. Depending on the severity and your childs need you may qualify for the respite benifits. Kale qualifies for both. This program will be with him for the rest of his life.

The at home program pays for our transportation to and from medical appointments for him that are not in our city. The at home program has also assisted in helping pay for the equiptment he has. Of course there are limits to how much they pay.

I will be writing more on the benifits and in more detail tomorrow. Thank you for stopping by!!!

Seating Clinic

So twice a year the seating team comes up to do a clinic here in Prince George. This was Kale's second time going. Kale went once before in May of last year.

At the seating clinics as the name of the clinic gives it away, they team help to fit your children for there seating needs! In may Kale was 11 months old or 8 months corrected, Kale got a custom chair made for him.

This chair can tilt back to help Kale to not have to work so hard, especially since in May Kale did not have any head control. You can also move this chair to an upright position to allow him to play with toys and be positioned better to help him use his eyes. We also got Kale a walker a month or so later, which we traded in for a new walker this time around.

At the clinic this time, Kale's seat as shown above was adjusted to fit Kale better, which we can get adjusted throughout the year if needed at a local Medi-chair store. We also got him a stander/walker called a Kid Walk . This walker is amazing! The back wheels even light up!!

We also got to order a Wheelchair/Stroller. There were so many choices! There were jogging strollers, lightweight strollers, and other wheelchairs. Everything did special things and some looked was cooler than others. They also had a pamphlet that had other models they did not have as an example. I wanted to be fashionable and get a really cool stroller, but there was a not so cool looking chair that was just so functional. The program that helps pay for the chair wants the chair to last 3-5 years. A stroller was a nice idea but just not practical for me. So I chose the X:Panda Hi-Lo Chair for Indoor/ Outdoor.

This is a stroller/wheel chair combo that can go as high as 23 inches and as low as 10 inches from the ground. Why would I want that you ask? Well I thought this chair would be awesome for school/home. The chair can go low to allow Kale to play with the toys low to the floor and when it is set into its high position allows Kale to see things from a different perspective. The high setting can also be used for feeding like a highchair, and the chair can be adjusted for everything in between to fit up to desks or be at eye level with other children!!! We will not be getting the seat that comes with this chair. We will be having the seat we already had custom made for him fit this base!! I am very pleased, and all this was made possible by the At Home Program. Well I still need to take a picture of his Chedoke Mcmaster seat which is a wrap around to help me take him grocery shopping among other things while providing him with trunk support. Later this week I will write about how Kale eats, what he uses, and how it all works!! Thanks for stopping by!!!

Halloween for us

Last year Kale was a pea pod, and this year Kale was a turtle. Both years we didnt trick or treat, I dont think it is age appropiate yet, and even if it is, he cant walk nor would he be interested in cany with his oral adversion. However both years we spent with friends and family, and that is what matters most. Of course providing Kale with as "normal" of an upbringing as possible is my goal, but being realistic is who I am.

I will never expect Kale to go running up driveways, and can only hope he will say trick or treat one day, but I will take him door to door in his lil chair, and if he wanted to walk using a walker I would bring it too so he can walk up to the door! I will say trick or treat for him if he cannot, and I will smile at knowing that he looks so darn handsome!!! Life is different for us special moms, I will find my way. The time between crying will grow to be very long, and I will learn to adapt and change the activities but never disclude him. It has taken me a while to come to this type of peace in my life, I have always known it would come, I just fought it all the way along because I was so devestated.

This posting is a thank you to everyone who has stuck through it with me, through my moods. Thank you for Kale! This posting is so people know life sucks sometimes, and its okay to cry. But no one feel bad for us. We are like all of you, we are just taking a path not known, its scary!!!

HAPPY HALLOWEEN!!!!!!!!!!!!!!!!!!!!!!!

Pool Physio

Kale has just very recently gotten the opportunity to start pool Physio. Kale used to get overstimulated way to much to be able to do something like this, so we are just starting now at 16months. Kale LOVES it and I do too! We go to our local hospitals therapy pool for now which I think is great. The temperature is soo warm, its a private therapy session which is great for Kale to get used to something new without getting over stimulated.

Physio is a way we can help Kale . Physio can help us stretch Kale's muscles and encourage movement , with pool physio the water helps to not only relax his muscles but also help create a weightless environment to encourage movement. I'm sure there is many other reasons to do this therapy but my favorite reason is that it is a great way to bond with Kale and provide a different experience for him!

I wanted to post a video on here but it is not uploading, sorry! That's why I haven't been posting in a while I was trying to figure that out. So I hope the pictures are OK. In the pictures are Kale and 2 Physios. What a lucky boy to receive so much attention.

With children like Kale early intervention like Physio therapy, speech therapy, and other forms of therapy are used to help there development along. We do physio with Kale all day through daily activities such as making his legs move like a bicycle during diaper changes, or just playing patty cake. The idea is to help Kale possibly develop some natural movement, give him comfort, and to help him have fun a grow developmentally. I am going to be taking pictures at his seating clinic, and at his daycare of him in his equipment and him enjoying it too.....I hope!!!

Feeding issues

Kale was born at 29weeks so he didn't have his "suck swallow" reflex yet like most babies his age. Typically little babes don't get there suck swallow reflex until about 32 weeks gestation. So about 4 weeks after he was born at 33 weeks gestation we started to breastfeed, he took to it right away taking in about 17mls his first feed!! How do I know he took 17mls his first feed you ask?!?! Well in the NICU you weigh EVERYTHING, from how much his poop weighs to how much his pee weighs ..You weigh everything going in and out, to ensure everything is working properly. So before breastfeeding you get your babe naked and plop them on the scale. We weigh the babes in grams , them we start feeding, then weigh them again. For every gram they gain that is 1 ml they drank!!  When Kale was just born he ate about 1ml every 4 hrs, then about 2 weeks later we were up to 18mls every 4 hrs. By the time we left the NICU Kale was drinking about 70mls which is a little over 2oz every 3 to 4 hrs.. At this point, given his feeding history we thought that feeding wouldn't be an issue for Kale.

Kale was a miserable baby to say the least. He had horrible acid reflux like most preemies. So I breastfed him for another 4 months after coming home, and had to give up because he wouldn't lay horizontally. You try to breastfeed a baby vertically!! Not happening, so we fed him breast milk by bottle after that. He took well to the bottle. We've been giving him the bottle since he was tiny in the hospital because milk comes out quicker in a bottle and the babies don't have to work so hard, so its a quick way to get there feed in. And you cannot leave the hospital until the babies are getting full feed with no issues, among other things. Kale seemed feeding wise to be trekking along good.

Kale is now 16months old and still on the bottle. He has a thickener we put in his milk so he doesn't aspirate. Kale used to cough and sputter when drinking, he almost seemed really disorganized. Kale had milk dripping out the sides of his mouth indicating a poor latch, and feeds would take a while. I started to worry about him breathing in the milk when feeding because his eyes also seemed to water sometimes when feeding and his coughing got more consistent. So we scheduled an appointment with our pediatrician and discussed the matter. Our pediatrician scheduled a barium swallow test. A barium swallow test is when your child is fed a mixture called barium that shows up on an x-ray so that you can follow the liquids path to see if it is going in the lungs. My hospital only had the technology for still framed pictures to be taken. The information we found from this test was helpful, and resulted in us getting a referral to the BC Children's hospital in Vancouver to have a video floroscopy done, which is like the test we just had with the barium, but its live and we can watch it like a recording not still framed pictures. Our test had confirmed Kale had been aspirating about 20% of the milk into his lungs, and most children would cough allot of it up but Kale isn't like most kids and didn't have the reflex to notice he was aspirating as much as he was.

So the feeding team which assessed Kale from Sunny Hill recommended that Kale be put on a thickener, as well as an antacid stronger than just the renetidine he was on, he was prescribed omeprezole.  The thickener is kind of like a starch to make gravy, kale needed his milk to be thickened to the consistency of a melted milkshake for safe swallowing!

Kale has been doing amazing with this, feeding got easier, we still try to feed him solids. Kale also had a real bad oral adversion. So much so that he didn't even like toys or his hands put near his mouth. So putting a spoon there with food on it was impossible. Kale now will allow toys, hands, and spoon with food near his mouth. He still isn't a fan of the food on the spoon, but at least he doesn't gag and projectile vomit everywhere.

If Kale continues to refuse to eat he will out grow using the bottle and the possibility of a Gastric Tube will be our next option. A gastric tube is a tube placed on your abdomen attached to your stomach so that you can bypass swallowing and just be fed. The little plug looks like a beach ball spout. We will continue trying to feed him regardless of if he had a tube or not. And having a gastric tube isn't the end of the world just another reminder of Kale's severity. But if Kale is sooo miserable feeding orally and I'm miserable feeding him orally, then feeding him by tube would be a opportunity to enjoy each others company more. You would know what I meant if you seen me feed Kale, I basically look like I'm raping my child's mouth with a bottle while hes screaming and dodging the bottle and smacking it away. Its horrible!


So very long story short, ensure your child isn't aspirating, look up signs and symptoms. Gastric tubes can be looked at as another thing your kid wont be able to do, or a opportunity to provide a safer more enjoyable was of feeding while providing you wit more "happy" time with your babe!

Traveling With Kale

Travelling with a baby sucks. Travelling with someone with special need is tricky. My experience with travelling with Kale so far has been going for only a 1hr plane ride to BC Children's Hospital. Travelling alone with Kale however even if it is for just a 1 hr flight, travelling through the airport is the tough part.

Ive gone to BC Children's with Kale when he was tiny using an infant car seat. That was OK. You still have to fold your cart up one handed wile trying to hold on to your floppy child and dismantling the infant car seat that is attached to the stroller and holding a bag. That trip was a learning lesson. Lessons learned were, the car seat is essential to getting in a cab, stroller is very much need to cruise around BC Children's hospital, and you know those old people who carry around Fanny packs that we make fun of...Fanny packs would be a good idea to carry a itinerary/IDs without losing them cause when your one handed...ugh I don't even need to explain...Fanny packs would be awesome.

So by my second or third trip I tried to not bring my stroller just the infant car seat. That was a horrible idea! Carrying him around while holding a car seat and bag going into hospital appointments or waiting rooms was tough. I was just trying to avoid loading and unloading the stroller from the cab. I once tried those snuggles that attach the baby to the front of you...You guessed it! Horrible idea as well.

In conclusion this is my method so far:

• Bring with you a stroller, car seat (any size), your bags or large purse.
• Put your child in the stroller until you get to security, then put your bags and car seat onto the security conveyor belt, then pick your child up after you grabbed your IDs and tickets, one handed fold your stroller down and walk through security. Make sure you had your bottles on the top of your bag and place them out into the tray with any other liquid or food before you pick your child up.
• Security will now swipe your stroller down with your bottles and any other opened food product for the child while you gather your other belongings.
• Set your stroller back up, place your car seat upside down or anyway you can balance it on the canopy of your stroller. Bags in the stroller and keep carrying the baby.
• When you get to your gate for pre-boarding, grab your bags, You still have your tickets and IDs in hand, while pushing your stroller one handed, walk to the plane and fold down your stroller after you removed the car seat from the top of it, and Enjoy the flight.
• Take a sedan or limousine to your destination from here, it a flat rate, not like a cab. Plus they help load unload, open your door. VERY HELPFUL!
• You can always check everything in, but they might break it, plus this way you don't wait for bag and your to and from destination in no time!!
• You now have your car seat for the Cab ride, stroller for wheeling around the hospital and to carry your bags.

Once you get the hang of it it is a breeze. People still stare at me like.." Are you sure you don't want to check that in?" I say " Yup I don't want it to be broken on the other side, i need it"! Ive sent it through before, did I mention that? They are not nice to it. Plus Kale is heavy, cannot sit and floppy, and when you need to pee or have a layover having a stroller is so handy when you cant put your kid down in an airport.

So that is my rant about travelling so far. Oh they do have a Sky train from the Airport. It is allot cheaper and takes you pretty close to the hospital, Ive done that before too. I will not do that again unless I have someone with me or help...and depending on my flight times!!

By the way, Kale is amazing inflight. He NEVER cries, and weve done this about 10 plus times!!

Equipment

I wanted to list some equipment I found use full. I have attached links to sites to view more on these featured equipment. The prices are absolutely insane and I highly recommend you ask your local Child Developments Center or Physio about the equipment or something similar and if you can get a loaner of the equipment they have. ALL my equipment is loaned from my physio at the Child Development Center and that is funded by the Red Cross. It is expected I return the equipment when I am done. Hope this gives people who don't have the special little ones an idea of what there equipment looks like and for those who do have special little ones maybe you might see something here you don't use or just maybe this will provide a comfort in knowing someone else is going through this too!!

I don't use this exact seat but something like it to help me grocery shop. When you by yourself it is a struggle to get a baby in a grocery cart if they don't have great trunk control ( abdominal). Bringing your stroller to the grocery store and pushing a grocery cart is near impossible, and when they are too be for an infant car seat putting the car seat in the cart isn't an option. This seat enables your child to sit up straight which help with visual development as well as muscle development, and just helps in general. I cried the first time I saw Kale in a grocery cart. He looked " normal " . Kale was just a little over 1 year old the first time he sat in a grocery cart! To view this seat on its website click here.

I haven't gotten a standing frame yet, but I am going to a seating clinic here in a couple weeks where the seating team will be fitting him for a stander like this one. Again it may not be this exact one , but you can get the idea. This stander helps promote proper standing in a child who like Kale likes to arch and just doesn't have the strength to stand in this position. Kale LOVES standing though. A stander like this would help kale to be able to see things from another angle, grab or touch objects on his table in the front, work on his muscle strength, and just to do something different! Kale at this stage of 16 months old still plays with toys aimed for children at about 3 months of age. He plays with his play mat and goes in  a bouncy chair that vibrates. If you would like to see this chair and its outrages price click here.

This is a fancy lawn chair.......Just kidding!! This is a bath seat. This seat helps Kale to not drown and get clean. Kids are famous for being very slippery when soapy, and when the arch, push back, and are absolutely no help because the cannot sit on there own, this seat can help keep our little ones safe. This seat provides very good trunk support and its mesh fabric would allow water to flow through. Plus I must say its the least scary looking piece of equipment out of the others! If you would like to see this seat on its website click here.

Swimming!! Just Like the bath, with little ones who don't move how they should its hard to help them by yourself. With the aide of a swim sweater, which is what you see above or.... a spring float which is what you see below!!

Doing pool therapy with the assistance of these floats are made possible. Very handy!!

These crayons are awesome for tiny hands! They are especially great for those children that like to turn there wrist outwards which would make holding a normal crayon impossible. I have gotten such wonderful pieces of art because of these crayons!!Click here to go see them online!

I'm looking into taking pictures of Kale's other equipment, such as his straps that go around his wrist and pull out his thumbs to encourage opening of his hand. Kale likes to do what is call fisting. This Handy little strap helps. Also I will show his walker, and much more to come!! Hope you enjoyed!!