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!!

Follow up EEG

Kale was diagnosed with Infantile spasms when he was 4 months corrected, he had his spasms controlled by 3 months later. We tried a drug called Vigabatrin first which didn't work then we tried ACTH ( adrenocorticotropic hormone) this was an injection we gave him I.M. (intermuscular) in his thigh every other day. This drug caused weight gain, and crankyness which I think was due to his huge appetite. In short which I will update on Thursday, Kale has has lots of EEG's one of which we are going to tomorrow Wednesday October 20th 2010. So I will be very busy tomorrow with no time to blog. So I thought I would write a brief history on his experience with I.S.(infantile spasms).

Its sad to say but going to the hospital is such a normal event now that its not scary. The only thing I get scared about when going there is that they will keep us over night for " observation" which is code word for they dont believe what your saying so they want the nurses to see it first hand. Which would be okay with me if they actually observed as opposed to checking in and asking me what I observed, I could do that from home! Anyway......

When we go to EEG's we head straight up to the pediatric ward, unless we are having a concious EEG which means we wont be giving him Chloral Hydrate which is a sedative and hypnotic drug as well as a chemical reagent and precursor. But tomorrow we want him sedated to do our check up, so off to pediatric we go. Oh by the way the reason we want to be at pediatrics for the sedated EEG is that a nurse need to be present incase of complications. Which so far we have never had a complication. Typically I get the nurse to put in an NG tube (nasal gastric tube(tube that goes down his nose to his tummy)) to give the chloral Hydrate because it taste like pure alchohol and Kale won't drink it. A NG tube is perfectly safe. The nurses measure how far the will put the tube in from his nose to the appropiate location in the tummy, then shove the tube down quickly before he screams. The nurses then push air through a syringe attatched to the tube into his tummy listening for it to not go into his lungs. We also pull back fluids from his tube to test the acidity level. If the chemical strip shows the fluid we pulled back is of the right acidity it means its in his tummy, because there should be no acidic fluids in his lungs let alone any fluids. And that his how we check placement of the NG tube for administering Chloral Hydrate.

So long story short, Kale will be getting a follow up EEG just to follow up and ensure this randome movement and staring I see him doing isnt seizures as well as to reassure that the Infantile Spasms havnt come back, and possibly see if some of the "abnormal" brain wave activity we were seeing on previous EEG's has tapered off a bit.

This is an EEG of Hypsarythmia which is a type of wave pattern shown to be infantile spasms

See how its irratic with no rythem.
This is a "normal eeg in a child

This is more patterned rythamic. There is alot more to a EEG which is hard to explain, but this is the raw idea of what we see.

Anyway like I said I will write more and clean this post up a bit on thursday! Thanks for reading!
 

Tomorrow

Tomorrow I hope to put on here some equipment Kale uses and how it works for him with some pictures of it. Today I put Kales Daycare story. On another day I hope to tell you about our experience with Kales infantile spasms, Acid reflux, travelling with a babe like kale, BC Childrens hospital, explore vision issues , discuss books I reccomend, and much more!!

Daycare

I remember thinking to myself that I was going to be spending the rest of my life watching and taking care of Kale. I NEVER thought he could go to school, which is obvious if you think about it, but I didn't, I was so consumed by my grief and loss of the baby I could have had and all the things that baby could do. I assumed Kale couldn't do any of it. Then Kale was about 6 months old corrected 9 months real age and it just hit me, Kale is going to go to school one day, he will just have a care aide, and go to special classes. I was thrilled at this thought, that Kale could be like and be with all the other kids! I still assumed since Kale did not have head, neck, trunk, or any control for that matter and was still on the bottle no Daycare would take him. Most day cares are licensed to have 1 child under 18months, and have up to 8 children per 1 adult. Most children that go to daycare under 18months can at least sit or start sitting, and can hold there bottle a little and maybe a cracker. Those kids can occupy themselves a little so they are pretty low maintenance. Kale's was and still is like a newborn.

One bright sunny day I drove past a sign that said they had openings in there daycare so I thought, why not? lets call. I made a meeting with Jenn and bam! Just like that they were willing to take Kale for the next month until I could get approved for a care aide no problem. Not only was this daycare 1 adult to 4 children, they were willing to bring in an extra person for him!! This daycare also had a couple autistic children, children with FASD, a blind child and a child with a chromosome deficiency! What are the odds I found this one? I then called my local Child Development Center and talked to my Physio Lynn , she got me on the list for a care aide. Luckily 1 month later I have a care aide for Kale Monday, Wednesdays, and Fridays 9am to 2pm!!

My care aide took pictures of Kale doing his physio and made a binder for Kale on the how to's for Kale during daycare. Rene my care aide is a experienced wonderful woman and I trust her completely. I am very lucky.

In the end I conclude when you are ready to accept you CANNOT have that "normal" life and enjoy in the fact that life will be just a little different and in fact some might argue more fulfilling. Kale can do what everyone else can just in a different way with some hoops to jump through with paperwork, but the same result in the end. ASK!ASK!ASK! If you don't get the answer from one person ask another. Keep asking until you know you have tried every avenue of possibilities for your child. Talk to your Social Worker, Physio Therapist, Occupational Therapist, Speech Therapist, Infant Development Worker, Neurologist, Pediatrician, or Family Doctor.

By the way did I mention Kale loves his daycare!?

Kale's First Drawing he did at daycare!!He was 13 months corrected 16 months real age!

Hatchback Shoes

I cannot fit shoes on my child for the life of me! Not that he needs shoes because he doesnt walk, but its nice to feel normal you know? Plus recently Kale has taken a liking for standing(of course with our assistance holding him up), so our Physio Lynn has given us some AFO's (Ankle Foot Orthosis).

Finding a shoe for Kale before these contraptions proved to be very challenging not only because of his fat littlle feet, but because he curled his toes when you try to put them in anything! Then I discovered Hatchbacks!!

Not only do the look so cute they bend in the center to help you put them on, the tongue on them comes all the way down to help ensure there toes go to the tip of the shoe with ease! So these shoes are not only stylish they are easy to use and specialy designed for AFO's!!

Kales Diagnosis

Kale our beautiful son, was born at 29 weeks gestation with no complications through vaginal delivery, drug free.

Kale had/has:

• Interventricular Hemorage Grade 2
• Periventricular leukomalacia (which he has severe)
• Cerebral Palsy Spastic Quadriplegia
• Infantile Spasms also known as West Syndrome (video)
• Visual Cortical Impairment
• Acid reflux.

The Beggining

People who know me best would use words like "pushy" to describe my personality among other words which I should not write. It is because of my pushy nature I at 21 weeks into my pregnancy was getting my second ultrasound. I told my midwife I wanted another ultrasound to get a more clear picture of my baby boys heart. I knew he was a boy because I had a ultrasound at 17 weeks gestation. I lied to my midwife, I really just wanted to see my baby again.

I showed up to my ultrasound so excited, full of water and wanting to pee like no one could believe. We got called into the room and started the procedure. It was about part way through where my life, my husbands life, and my baby's life had took a turn for the worst. The technician had noticed my cervix was thinning out. For those who dont know what that means, typically when your cervix thins out your on you way to delivering. The delivery could take weeks though but at 21 weeks of pregnancy out of 40 I needed more than a couple week. So I was sent to the hospital to get checked out. After hours of waiting, I was told I was 3 cm dialated. I was told immediatly I was on bed rest and would be having my cervix surgically sewed closed. It was a very quick and painless procedure.

 My next 8 weeks on bed rest was horrible. I wasnt allowed to sit up, it was reccomended I use the bathroom in a bed pan, and I couldnt even take baths. I felt perfectly fine. I stayed laying in my bed for 8 weeks straight.

By week 28 I started to get my mucus plug constantly coming out and replacing its self it was gross. I called the hospital and they said this was okay as long as I saw no "new" blood (bright red not dark red/brown). I was getting alot of "old" blood as the days progressed, I called again they said it was no big deal. On the last day I had no appetite, my braxton hicks contractions were happening like 10 times or so a day very randomly. I felt concerned enough to have my friend take me to maternity to meet my OBGYN. At this point I had no pelvic exams, we had nothing done to me that could stimulate labor. My doctor however felt that he wold check me out with a pelvic exam where he found out I had torn just a little ( my stitch tore ). The doctor sent me home. As soon as I got home I had a horrible back pain. I told my husband to count the time between the pains, I had 5 more pains then my water broke. All the pains were about 5min apart..

I was 29 weeks pregnant and being flown by emergeny plane to Vancouver, British Columbia, with my husband by my side,  from my town. From the time my water broke until the plane people came and got me and took me to Vancouver it had been 5hrs of contractions with no medications since I was flying. When I arrived at the hospital about 1230am they decided to cut my stitch out for sanitary reasons. When they cut my stitch out they realized I was 9cm dialated and told me I was to deliver in 30min. I did. Our son was born at 2:18am by vaginal delivery with no complications weighing 3lbs 1oz (1410g) at 29 weeks gestation and was taken straight to a wing next door which was a Level 3 NICU. There were no concerns.

This is how our journey began, this was our introduction into parenthood. This seemed normal, no one seemed scared, so we wern't.