Wednesday, 21 March 2012

March 8-March 21 Hello Spring!!!!!

Well I really haven't been putting my full effort into keeping the blog up to date but as I am feeling better now hopefully that means I will be able to update more often!

We stayed in the hospital until Saturday March 10th for the ketogenic diet. It wasn't a bad stay although by the end of it Addison was screaming all the time again. This time we think it was from constipation because of the new diet. Now one would think that since they knew this was going to be a problem and Addison already had issues with this they would have put her on something from the start. Unfortunately, things don't work like that all the time or really ever  so she ended up in pain and the medication didn't work until the Sunday once we were home.

When we left the hospital on Saturday morning she still wasn't in ketosis but they were OK to send us home. Really they weren't doing anything anyway I was doing all the meds, Feds, blood and urine checks etc, so we really could have came home long before. But I didn't say anything just did what we were told... surprising eh..

I have to give you just one example of a nurse we had while there....

Addison was screaming for the second day in a row. I was there alone as Tyler was at work. I spent the day walking, bouncing, cuddling, and doing all I could do to try to get her to stop. At 12:00 everyday is when the new formula is made and it is also when Addison is due to eat so I paged the nurse to bring the new bottle in. When she came in Addison was screaming she went to put the formula in the fridge. I told her I had to feed her now. Well instead of offering to get it ready for me because clearly I had my hands full she sat it on the table. I stood up put screaming Addison in her crib and proceeded to start her formula the nurse then turns around and says, "can you check her blood sugar before you feed her please?" I wanted to scream and yell and tell her that was her job but I didn't I just did as I was told as poor Addi screamed in her crib even more..........

We left the hospital Saturday morning just in time to go meet our contractor and sign everything for our new house! We are very excited! We have to be out of this house April 30th (kind of sad when I sit and look around thinking about all the memories). We should be in our new house by July! We decided to go with a bungalow on a slab with three bedrooms, two bathrooms, an attached garage, an 8 foot pantry and open concept!!! We look forward to picking out everything and getting to decorate a new house! We are even going to have a dishwasher for the first time in my life! I don`t look forward to the nights and weekends of Tyler working to get it ready but I will manage and it will all be worth it in the end!

March Break was last week! I am very pleased to say I spent a very nice and quiet week at home with Addison. Monday we went to the IWK for Physio and a weight check and Addison had gained the weight back. We had a visit with Ava and Alicia and then Debbie and Jared and on Friday I babysat Jared for the day and that was fun! He is so cute with Addison! He cuddles her and loves to hold  her hand!
Nothing like a funny farm in the bed

God she melts my heart

If that isn't cute I don't know what is

Best Buds

He did that on his own

Trip to the park 

Best Friend Ava came to visit and what a little ham she is

Mini Alicia

We were thinking of buying Jared a dog bed for Easter because he spent the majority of the day playing on Tanks

This made me laugh

All of a sudden he grabbed on for a hug

Saturday, we went out for the day to do some shopping and visit with Nanny and Poppy Mills. We had a great visit and Addison did great in the car! It is such a treat when she isn't crying!

Sunday was a bad day Addison started crying again and this time we think it was teeth related. Her gums were swollen like blisters it was a sin.

Monday was back to work for me after having almost four weeks off which is crazy. Tyler had to take her for a blood and urine test. We have to test her urine everyday twice but were concerned because it was showing blood. Now she was not symptomatic and was peeing fine but they suggested we go in and have it checked just in case. It came back fine!!! Now to figure out why it is showing that we will see how that one goes...

Apsea came to the house today. It was the main girl who assessed her this time last year. She was so impressed. She saw great improvements which is the one good thing about CVI...improvements do occur.
She sure doesn't see like you or I but she said she definitely glances and follows me when I walk by, looks when I speak. She said that she doesn't have to be in a dark room to watch her I Pad any more and we don't have to do the stupid flash light stuff!!!!! It was very positive for a change! Now we can hope for more progress!

What else is new with Addison
- She still loves to look at her wee see videos and sparkabilities app
- Cuddling outside is her new favourite activity
- She had her first hair cut!!!!!!! No worries there are still lots of curls
- She was fitted for hand splints we will get them next time we go to physio
- She still loves loud she laughed when the recycle truck went by
- She hates to sleep, doesn't nap, doesn't sleep through the night and thinks parties occur overnight!!!! .....we are starting to get very good at functioning on little sleep but man doesn't it bug me when I read Facebook statuses where people are complaining about their newborn not sleeping or that their child wont nap for more then 45 minutes etc............were lucky to get a 30 minute nap all day and she gets up at 6 and doesn't go to bed till 9..........sorry just had to say it!
- She weighs 20 pounds 10 ounces
- She is 30 inches long
- Her formula is a pain to make. It requires this special gram scale and lots of dishes and a blender which all happens at 9pm! Nothing like doing dishes every night before bed. Actually, Tyler is doing good at doing it for me!!!!!

Work.....I love being a teacher. When I am there with the kids I think about how there is nothing else I would rather do for a career....when the kids leave and I look at all the other work that has to be done that keeps me from going home to Addison I hate it. I am developing a happy medium between the two but it is keeping me on my toes. Having missed a lot of time due to Addison being sick has been hard, I am playing catch up. I have heard rumours about parents of my students and staff members making comments about me missing time and being cranky about it. I have chosen to ignore all of that as it is just rumours and I will choose to believe that all of these people realize I am more then a teacher, I am a MOM...and like every other mother I would do anything for my child even if that means putting my career on the back burner....but really did I put it aside.  Little do those ignorant people know I called my substitute to check in all the time, had very very detailed plans, had all my work brought home to me so I could mark it, had her leave me all notes possible for assessments and made sure they were not spending time doing busy work...all in which did take time away from Addison but I thought it was worth it.
But like I said there are just a few too many people around here who don't know how to say anything nice about anyone because they hate their own life so much so I am going to ignore it all!!!!!

Hopefully I wont take so long to write again! No promises though! The new laptop is really helping out!

Happy St Patrick's Day

Road trip ready

Addi's first hair cut

Summer in March

Thursday, 8 March 2012

A poem for Mom's of Children with Special Needs

There are women that become mothers without effort, without thought, without patience or loss and though they are good mothers and love their children, I know that I will be better. 

I will be better not because of genetics, or money or that I have read more books but because I have struggled and toiled for this child. 
I have sat in the NICU and waited.
I have cried and prayed.
I have endured.

Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.

I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.

I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.

Whether I parent a preemie with physical challleges or medical issues, I will not be careless with my love.

I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.

I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.

I have prevailed.
I have succeeded.
I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.

I have learned to appreciate life.

Wednesday, 7 March 2012

Ketogenic Diet

Since we have not had great control of Addison's seizures over the past month the neurologists suggested that we try a ketogenic diet. We had no idea what this was and felt very overwhelmed and didn't know what to say. They asked us to start this last week when she was screaming all the time and at that point we said no we needed time to educate ourselves and wait to see if the seizures were going to progress etc.

Here is what we found...
- It is a high fat diet that is used to treat seizures. The diet eliminates carbohydrates and the body uses fat for energy. She will be in a state of keytoses which si when your body has to use fat as energy.
- 1/3 of children will have seizure control with no meds, 1/3 of children will have seizure control with diet and meds, and 1/3 of children don't see success or find it difficult
- Since Addison is tube fed this diet will be easier for us because we don't have to fight with her to eat the required fatty foods(oils, butters, whipping cream).
- The diet requires a week of hospitalization to be closely monitored as the diet is increased to the full amount over 3 or 4 days.
-The results can be immediate or take up to several months.
-The diet is inadequate in many vitamins and minerals and supplements are prescribed.
- There are side effects of the diet but nothing as bad as uncontrolled seizures(constipation, kidney stones, decreased growth rate)
- The formula consists of canola oil, small amount of prune juice, carb free formula, half salf(so she gets some potassium)
-It is precise measurements to the gram and requires a fancy digital scale we had to order from Toronto
-Her formula will have a 1:3 ratio of protein/carb to fat
- We will have to test the keytones in her urine twice a you putting cotton balls in her diaper and squeezing the pee out of them.
- She will always have the lowest carb form of medication and when possible crushed pills. No more children's Tylenol etc.
-Special soap, lotion, bum cream, sun screen, bug spray, baby wipes, or anything that could absorb into her skin! It all must be carb free! Thankfully, the dietitian gave me a list of all the carb free products such as pampers sensitive unscented baby wipes!!!
- If she starts to have to many keytones in her body which we will know because she will be flush, lethargic and panting we will have to give teaspoon of orange juice to bring her keytones down.
-Initially children may loose up to 10 percent of their body weight and we will have to weigh her every week at the same time in the same clothes.
-This will get complicated when she gets sick. Her keytones may decrease and if vomiting we have to be more careful with pedialyte etc.
-Once she is in keytoses we can leave the hospital!!!!!!!!!!!!!!!

So after realizing that Addison was still having seizures over the weekend and that the next step was increasing meds or starting the diet we decided DIET!

What did this mean at 8am Monday morning when I had to teach all day, had duty in the morning, recess and lunch, had a meeting at the end of the day, had to interview on the phone with the dietitian, prep for a sub for 4 days, cook supper and pack to go the hospital.....WOW the end of it I wanted to sit down with a nice cold glass of # 2 disagreed so we opted for a hot bath and bed!

We had to be at the hospital at 8am Tuesday Morning. Clearly Addison loves it at the IWK and was so excited that she got up at 4am...just what we wanted. Not only was she awake she was screaming. Once again the only way I could get her to stop was the turn up the music and sing to her! Nothing like 5am in the morning singing The Judds "Grandpa"  at the top of your lungs! Poor Tyler!

Off we went to the IWK to start the diet. We spent the morning in our room which is quite large and has a nice view...we upgraded to a 5 star resort this stay!
Getting ready to have her port accessed for blood work

Sterile environment getting it put in

Addison had to have blood work done, and had to fast until 12 pm.

Her first feed went well and it has gone great since! She gets her blood sugars tested every 6 hours to make sure she doesn't go to low.

We had a great visit last night with Nanny and Poppy Halloran. Today we had Auntie Debbie this morning after her night shift, Nanny Donna for the morning and then Grandpa and GG for the afternoon! Thank goodness because it would have been a long day. Even though sometimes it seems like we have a revolving door because the number of people that come in throughout a day(nurses, doctors of all sorts, etc) is crazy!
We had to say bye bye to our favorite dietitian which was very sad because she was amazing. We now have a new dietitian who specializes in the keto diet.

Mid afternoon nap on our bed

Hanging out

Playing with GG

Time to have her sugars checked

A new and improved way to look at her lights!

I participated in a study today on CP today also which was nice to answer questions about the center in an honest way.

And as always our nurse was new and not quite on the ball so we spent lots of time waiting, waiting and waiting more for stuff we needed! Thankfully we have a good one tonight!

We had a minor accident today with her mini lights...good thing they know I am a good mom or we would have had Social Workers banging down the door!

Addison had a great day of smiling, laughing, and cuddling! I even got in some oral, vision, and physical therapy! We just took her to the tub room for a bath and now she is having a cuddle with her dad.

The goal is to be home Friday!!! So we say Saturday so we don't get our hopes up!

I am on March Break next week which I am so looking forward too! I hope that by the time we go back to school we will have this whole thing settled and seeing progress! I love being a teacher but I hate being a teacher when I can't be there. It is hard on the kids. At first having a substitute is fun but by the end they are missing the structure and daily routine they are used too. I told them I wouldn't be in for the rest of the week and in a child way told them why and they seemed to understand as much as they can!

Addison weighed 20 pounds 10 ounces yesterday at lunch and tonight she weighed 20 pounds 7 ounces...
She is 30.1 inches long!

What a wonderful feeling it is to be in a hospital and not have a horribly sick child and actually relax! I mean the beds comparable to sleeping in a tent without an air mattress but I am not complaining! Shes happy and healthy!! Subway and Tim Hortons I may never want to see for a long time after the past month but at least I have a new strange addiction! Veggie subs with bacon and cheese lots of pickles and barbecue sauce and a skim milk to drink!!! A sub that I loved back in my high school days! Oh and the cafeteria jello and chocolate pudding!!!!!

Oh and....our house is final, house plans are finalized and we should be singing the papers for our new house in the next day or two!!!!!!!!!!!!!!!!!

Random Pictures from last week at home! Enjoy

Hanging out while mom is cooking!

Look at those chubby hands

Me and the babies!

Bath with cousin Jared at Grandpa and Nana's

Tank wanted to be included!!