Brilliant Beginnings and why Coleen is my Saving Grace!

A few months ago I decided to get a contract going with FSCD, which is Family Support for Children with Disabilities. Originally I got the contract to help cover the cost of any trips to and from the Children's Hospital for Hunter's appointments. They will help financially with the cost of transportation to and from appointments as well as pay for any parking while at the hospital or doctor's office. We don't have many appointments for Hunt but every little bit helps when it comes to finances. The FSCD will also help cover other costs that a family might incur when caring for a child with a disability. I had a lady come out to the house and give me the full run down on all the different things that they can fund. One of the things they will cover is a program called the Triple P Program which is a parenting program that helps parents deal with challenging behaviors. They come right out to the house and once a week they will teach us how to address certain issues we are having.

Best of all though, is that the FSCD is funding a program for Hunter called Brilliant Beginnings.

Brilliant Beginnings is a "multi-sensory, Early childhood Development" program for all children, not just those with special needs.

One day when Hunter's Growth and Developmental specialist, Shirley Van Dyk, came over, we got to talking about how it was unfortunate that Hunt was 1 DAY too young to be going in to preschool this September. I was lamenting how I wished he could be in a more focused routine play group setting where he could be learning from people who weren't ME. I'm slowly learning that children tend to listen to their mother's LAST!! Everyone else first.

So Shirley mentioned that a college of hers had started a program called Brilliant Beginnings. It caters to all children but there is a special needs program that she could potentially refer Hunter to and if there were spots left then perhaps FSCD would fund the program for him. Shirley referred us, Melanie and BB got a hold of me and came over to meet Hunter and explained the program to us, she and I contacted FSCD, Susan at FSCD made an addendum to our contract and Hunter got a spot in the BB program!

This is exciting on sooooo many levels. Here is why.

Hunter will get one YEAR of the BB program to start off. The program is 2 hours a day, 5 days a week, one on one play therapy/behavioural therapy, IN MY HOME!

Coleen is the girl who comes over EVERY weekday to play with Hunter from 9 am until 11 am! EVERY WEEKDAY!

Let me reiterate!

Coleen is a young lady who comes to MY house in the morning for 9 am!
She plays with Hunter for 2 hours! Monday - Friday EVERY WEEK FOR A YEAR.

Are you getting the picture..?

Here... I HAVE TWO MORE HOURS IN MY DAY EVERY WEEKDAY NOW!

I HAVE 2 HUNTER FREE HOURS TO CLEAN MY HOUSE, SHOWER, READ MY MAIL, COOK MEALS, DRINK A HOT CUP OF TEA!


I asked Coleen today what my role in the play therapy should be and she said "Honestly, you don't really have to do anything. Most parents go out, go shopping, go for coffee, clean their houses, catch up on work and the like. But you certainly don't have to be here or participate." After she said this I said, "wow ok..I probably wont GO anywhere but that's good to know." I then proceeded to hide in my bathroom and weep quietly. I felt a complete flood of relief wash over me. I gained my composure, went back out into the living room and folded 3 baskets full of laundry while I watched Hunter and Coleen play.

I also had time to clean the cat litter, feed Phoenix, put some laundry away, tidy the kitchen and sit in the sun in the yard for 30 mins.


I am absolutely ELATED that Hunter will now have play time EVERYDAY just for himself, and to know that he will be working on new skills with a qualified behavior therapy team.
This means so much to me. He is going to have so much fun, learn so much, and expel some energy doing it!


Today, Coleen got Hunt to wear his glasses the ENTIRE time she was here. He even wore them for an hour after she left because he forgot they were still on. One small step for Hunter, One GIANT leap for Mom!


Thank you Coleen.
Thank you Shirely.
Thank you Melanie.
Thank you FSCD.
Thank you Brilliant Beginnings.
Thank you Hunter. I love you and I hope you have fun every day with Coleen.

Tonsilectomy FTL!!

Well, My sweet angel Bean had his tonsils and adenoids removed on Tuesday this past week. It was a very difficult event for EVERYONE. I really didn't know what to expect and Poor Hunty had no idea WHAT was coming.

:'(
Here he is a 6 am. All Snuggled in cozy in his stroller as we check in at admitting at the
Alberta Children's Hospital.

Definitely looking a little tired as we woke him up at 5:30 to get on the road.

These few pics make me so sad.
Here, we had just arrived at the Day Surgery ward.
We were the first people there and Hunty got changed into his snazzy cute little Hospital garb. I just loved the teeny tiny smock.

CUTEST BABY BUTT EVER!
Gotta check out the bed and all the cool stuff going on behind the scenes.

After we got him into his cute little scrubs, Hunt had some blood work taken and was prepped for his surgery. The blood work was sad because he was crying so hard and we had to hold him down. Then he got a little ankle bracelet in case he tried to run away, that way people would know where to return him.
At first the bed he was on was just a regular bed so they had a proper Baby Crib rolled in for him. Then he was rolled off down to the OR room where I waited to meet his Doctor. He didn't want to sit still in his crib so I held him until the Anesthesiologist came. She carried him off to the operation room and I went to find a coffee, wishing I could lace it with half a micky of Baily's Irish Cream to easy my nerves.
I grabbed a coffee, rolled my stroller (aka Luggage carrier) into the Day Surgery Waiting Room and proceeded to knit for what seemed like a year!

I sat down at 8:23 am.

Doctor Lange came out at 8:38 am.
She told me that Hunter's surgery went "swimmingly" and that he was doing just fine. His tonsils were of medium average size and he was just in Post - OP waiting to clear his head of the anesthesia. I was told I would have to wait till they buzzed me before I could go meet him in the Day Surgery recovery area. They give you these new fangled pagers now that they vibrate when they are ready for you, rather than paging you over the PA systems. It's really nice and more private.

So I waited. And I waited. And Waited, and Waited!
And at 8:50 I was paged!
I jumped out of my seat, shoved my knitting into the stroller, grabbed my pager, rushed BACK for my coffee and boogied off to the Day Surgery ward where I would find my boy.

I was told Hunty was in Room 24. As I started toward room 24 a nurse started walking with me. She said he was awake and that he was a little upset and had been clinging to the nurse who was watching him wake up from the surgery. He wouldn't let go of her and he was crying pretty hard. As we got closer I could hear my poor lil guy sobbing and gasping. There he was in his recovery room, sitting on the edge of his bed, hanging on to this poor nurse for dear life. The instant he saw me he reached for me. I grabbed up my boy and held him close. I felt so bad for the poor lil guy, having to wake up in pain, all groggy and in a strange place with nothing but strangers everywhere. Oh so sad.
I rocked him and comforted him for a while, waiting for him to calm down.
He wouldn't settle.
We tried to give him some water, apple juice, ice, and even a Popsicle.
He wouldn't take anything.
The more we offered him the more upset he would get.

The nurse brought him some codeine and we had to pretty much hold him down and plug his nose to get him to swallow it.
He spit out most of the Tylenol that he was given prior to the surgery so he was in some pretty extreme pain. Since we had woken him up at 5:30 am to get him to the hospital by 6:25 am, he was pretty exhausted by 9:00 am, but every time he would swallow he was in agony and he would start gasping and crying again. You could just see the pain in his eyes and he just wanted to pass out for a while and not think about all the chaos. I sat with him on my lap for nearly 2 hours, holding him and cuddling him, hoping that the codeine would help, but it seemed to only make him groggy and dopey but really wasn't doing much for the pain. At 11 we forced a dose of Tylenol into Hunty and I called Daddy who works within minutes of the children's hospital. I told him I needed some help and that Baby Bean needed his Daddy. Within 15 - 20 minutes Daddy arrive, dressed in his coveralls, still in his sweaty work boots. Bean took one look at his daddy, stopped crying, reached for him and lay down his head on Daddy's shoulder and went to sleep for nearly two hours. I can't tell you the relief that swept over me. That was the first time that morning that I broke down crying. Just seeing Daddy there, I knew everything was gonna be OK.
He is such a great Daddy.
David was supposed to go back to work at 12:30 but he couldn't bear to leave Baby Bean.
We took turns holding him, going for bathroom breaks and cafeteria runs.
For a while the two of them slept together in the Lazy boy recliner next to Hunter's crib.
I sat watching them, knitting.
I'm finding that knitting makes for a fabulous Worry Doll.

After a few hours, David managed to get Hunter to sleep a while in his crib.
He went home at 3 or so, needing to shower and check on Samuel who was home alone.
I am so happy that Sam is mature and trustworthy. It gives us one less thing to worry about when he is home alone. He makes his own lunches and keeps busy and would never let anyone in the house. I'm happy with how he is maturing lately.

After a good long nap, my little man woke up feeling quite a bit better.
The concern the nurses were having earlier in the day was that if he wasn't drinking or taking any fluids in his mouth, then his throat would be very dry and it would make things worse. As I said, every time we tried to get him to drink something he would get upset and start crying, even after the Tylenol had kicked in. He would sleep for half and hour on Daddy's lap or my lap and the nurses would ask us to wake him up and see if he would drink something. This only caused my poor boy trauma as he would just get so worked up. Finally I said that I didn't want to wake him up anymore. He was too tired and he needed to get a decent sleep, otherwise we were just tormenting him and making it worse. The less sleep my boy got the more miserable he was going to be. Thankfully, the respected this and allowed him to sleep for a few hours.
AND YES!
Daddy returned to the hospital around 6 or so and by then my lovely, sweet handsome son was ready to wake up.
We got him out of his crib and changed his diapy and smock so he could feel a little better.
He sat on Daddy's lap and I tried to give him some juice. He REALLY wanted to drink. He would reach for the bottle with enthusiasm but get dismayed when it hurt to suck.
I went to the fridge in the hall and scoured for something I thought might make him feel better.

SORBET!

He ate an entire Dixie cup of Orange Sorbet!
Then a popsicle, a chocolate pudding, then another half of a strawberry sorbet!

Here is a blurry picture of my boy sitting in his crib, covered in chocolate pudding, eye's crossed from all the codeine, toe all aglow from the oxygen/heart rate monitor.

That night he did quite a bit better, though getting him to take his medicine was still a trauma. We still had to hold him down and plug his nose to get him to swallow it, but I'm told the codeine tastes awful.
He would sleep for short bouts of roughly 2 hours MAX.
I slept next to his crib in the recliner.
My sleep was awful. There were machines constantly ringing, babies coughing and crying, lights going off and on, more machines beeping. Not only was it noisy but for the most part Hunter slept on my lap, or lay with my in the recliner. Being 8 1.2 months pregnant with a 25 lbs 18 month old boy squirming on your belly for hours.... It was a rough night to say the least.
I was up at midnight, 1:30 - 3:00 or so then again at 5:50.

When I awoke at ten to six, I woke up because the on shift nurse was in our little room (it wasn't a room at all, but a 3rd of a room) giving Hunter his codeine and Tylenol. She was also changing his diaper and checking his Stats.
I asked if she needed help to give him his meds and she said no he already took them.
Wow!
He was taking his meds without having a trauma.
The other fabulous thing about that morning was waking up to see a Tim Horton's coffee, breakfast sandwich and a bag of Timbits waiting for me on the side table!

Oh Daddy! How we love and thank you!

He still wouldn't drink anything significant tho.
I was hoping he would at least be interested in some juice but he really wasn't.
It wasn't an hour later that he was back to sleep.
We both slept till about 9!


Later that morning the nurse on shift (we had seen 5 different nurses by this time) mentioned that if he wasn't eating or drinking by the afternoon then he wouldn't be able to go home. If he was willing to swallow, eat or drink, it would show that he was doing well enough to be discharged. Well you don't have to tell Hunter twice!

I think he was feeling quite a bit better by that time anyway and he was going to make up for lost time as it was.

He ate a Dixie cup of ice cream to start.
I wanted to see how well he could manage soft and cold.
Then he polished a whole mini box of rice crispies, well soaked of course.
Then I thought I would see if he was interested in any of the sausage they brought him for breakfast. He polished off a whole one.
He then had an apple juice, half a piece of toast with peanut butter and jam and last but not least, a Timbit!

My boy chowing down!

We went home early that afternoon, miserable, tired, happy to be home, both desperately in need of a bath. We slept that afternoon away, patiently waiting Daddy's return.

Since then, Hunt has had a few mornings where he has been a bit more sore.
And Oh The bad breath he has. Blech!
He has also been quite a bit more clingy and sucky.
He has become the world's biggest Daddy's boy as well.
He just can't get enough Daddy.

And lastly, We are all coming down with a cold.
Hunt has had quite the runny nose and Dave and I are both getting sore throats.

If it's not one thing, it's another.

Sleep Study!

Well, Our sleep study was last night at the Alberta Children's Hospital and it was a very eventful evening. I honestly thought I got some sleep but I had to work at 8 am and was so bagged by 12 that I couldn't keep my eyes open and I went home at 12:30. Sleepy Bean also slept most of the day. Daddy took me to work andBean slept till roughly 10 then went back to bed at 12:00 noon and didnt wake up till 4:15 or so. That's a definate sign that my child was tired.

Sleepy Bean was so good that the Sleep Technician said he was the best behaved child she had ever worked with in her 8 years. Even better than most of the older kids. She hooked him up to tens of wires and monitors and gadgets and glues and taped and plastered devices to him all over the place. His big toe had a large red light bandaided to it and he fell asleep trying to play with his bright red toe.

Sleep Study Here We Come!

Saturday night is Hunter Bean's overnight sleep study at the Alberta Children's Hospital. I'm a little mixed up about it right now because getting the little man to cooperate and wear the CPAP mask has been a trial in patience. Throw glasses into the mix and the day can be down right frustrating. Bean still doesn't want to wear the mask and I'm lucky if he will tollerate it long enough to fall alseep while wearing it. He doesn't understand NO yet either so getting him to leave the mask alone and not pull it off is the hardest part. When he was a lot smaller we didn't have that issue as he didn't really know how to pull the mask off and now he most certainly does. The glasses are the worst. They come off so quick and easily and I don't know how to keep him from pulling them off. I sit him on my lap and play with him for a little bit while he wears them, holding his hands and keeping him busy, but the minute I let go of his hands he pulls them off. Today he was being so silly. He knew he couldn't use his hands to pull them down but he still wanted them off so he kept stuffing his face into my chest and trying to pust them down. It was cute. He was really trying!

I am kind of looking forward to see how well he does with all the testing and the results tho. Additionally, and I know this may sound completely nuts but, I like sleeping in the hospital. It's relaxing to me. There are people there to take care of you and they have seen everything so there is no reason to be embarrassed about things. They took really good care of us when I had Hunter and that left a great impression. I am looking forward to just ... Sleeping.

So Thursday we have to be at the Children's for 8 pm to sleep over. Bean will be ok with that. He has had many nights away from home camping and going to Nana's or granny's.

I See Bean See!

My Post Titles are So silly!


BEANY!

We went to the Alberta Children's Hospital today to have Hunter Bean's eyes checked. He followed the lady and her fancy pen light, showed her his pretty blue, albeit, crossed eyes, and I'm sure made her day with his charming smile. We were lucky too. D said he would meet us there at 2:45 after our appointment but he showed up early and spied us having a hot dog in the cafeteria. We were excited to see him. Seeing Daddy is always exciting and watching Beany's face light up when he sees D is so great! Not only did we get extra time with Daddy but our appointment that was supposed to be an hour long turned out to only take 15 mins and we were able to go to the mall and have a coffee with him before I had to rush off to work, so that was a nice surprise. We have a follow up appointment on Feb 6th to see the actual Ophthalmologist. Today was just an assessment to see how soon he needed to see the Doctor I suppose.

We are very fortunate to have such a beautiful hospital to take him to. His eye doctor, the Down Syndrome Clinic, the RSV Clinic and the baby massage classes are all at the ACH (Alberta Children's Hospital) and it's an absolutely beautiful hospital. It's a very warm, colorful and enjoyable place to take your children and I always look forward to our appointments there even though it is 2 hour / 3 bus ride for us from home.


Every other Friday we have a drop in at the Down Syndrome Clinic where Hunter Bean gets to see his Dietitian, Occupational Therapist, Growth and Development Specialists, Speech Pathologists, etc, etc, etc. I'm always so proud to take him and the ladies there just adore him.

Ha, We were looking at his lil tooth today and it's the furthest thing from straight! Which is just terrific because I went through the whole braces, bionator, head gear, retainer thing and wow how it sucked. So I reallllllly reallllllly hope that his teeth are nice and straight and not like mommy or daddy's! Arg! Ce la Vie! It is what it is.

Regardless of glasses or braces, he will be a handsome boy. His brother Samuel is a good looking kid and will be a real ladies man when he gets to be a teenager. I'm sure we will have all kinds of girls calling the house for Sam. :D If only he would listen to us when we tell him that girls don't have cooties, that they are actually pretty cool.

We are slowly teaching him how to cook so that he will be able to impress all his GF's to come. So far he has mastered Oven baked Pizza (Delicio), Itchiban (Ramon noodles), Canned soups, Nachos baked with cheese in the oven, and he manages the Microwave quite well. AND BOY OH BOY can he and his Dad make a KICK ASS Banana Bread! I'm very proud of how Sam's cooking skills have come along since he moved in with us. He was not really interested in learning to cook and was nervous even opening the oven, but now he shows signs of confidence. He makes his own lunches, whips up bowls of oatmeal in the morning for breaky, has made macaroni a few times for himself. WOOT! He'll have bachelor food mastered by his 12th birthday and we will be able to start teaching him the finer things like the BBQ this summer! Wont that be great, D and S out on the deck, Bean crawling around in the grass, steaks on the BBQ, corn on the cob, potatoe salad and a beautiful summer evening! I'm looking forward to it already.