Day 23 - 27 - 23rd November to 27th November

Well we are now going to update in weeks as I am extremely busy with Kezzie and never get a chance to sit down and just breathe...so will update once a week so that we can keep track of your progress Kezzie... we are home for a week now...we do speech therapy twice a week from home.. we do Neuro physio twice a week from home.. we do brain gym once a week...and we are just pushing forward...Little Kezzie is still on pureed food but not a happy camper...It does not fill her and if anyone knows Kezzie they know that she has hollow bones... I sit back and reflect on Kezzie and her eating habits as we have to assess if she is on par...I remember when I moved Kezzie onto a bottle she never drank a full bottle... she would drink some leave it and then later want the rest of her bottle... Kezzie never ate a big meal but ate in small bits all the time... when she was little she would eat...then go run around or play and come back and eat the rest...now many people believe that a child should sit at the table and eat all their food dished up to them but think about it do you always feel like you want to eat? Do you always feel like you dont want all your food but you were raised that way to eat all your food so your kids should do the same? I was never raised in a home like that but I have seen many friends who have force it on their kids and invariably some of those people have eating disorders or weight problems...Kezzie would eat all her food just not in one setting and that is probably why she was so thin as well... I always joked and said to Mom maybe I should eat like that ... small bits at a time and run around in between... who knows maybe I should copywrite it and bring out a new diet....Princess Kezzie's Way....speech therapy seems to be where Kezzie is battling due to the fact that the oral is the most difficult part to gain back and the hardest work...she fights the speech therapist all the time...God grant her a spirit of acceptance that this is something she needs desperately as without speech therapy we cannot eat that McDonalds cheese burger...I have the most amazing mom and I think that is why I am doing so well as a mom... my mom has been with me all the time and she has been a pillar of strength...what a blessing I have in my mother...she rushes and does her work then she comes and helps me with the cleaning of my home and the looking after Kezzie...I know that this is breaking my mom and dad's heart to see their grandaughter like this as she was our mischevious, energetic little sprite who was more inquisitive than any little monkey around ... on the go and exploring and searching for new things all the time... guys I know you are hurting and I appreciate all you do... I am sorry I cannot give more than this right now as my energies are concentrated on bringing back my Kezzie and trying to find a balance with my Miggie...thank you Mom and Dad for looking after Miggie... Miggie refuses to come home right now as he is missing his old sis and her fun ways...he gets so distressed when it is medicine time as Kezzie works herself up into a complete fit when I give her Epilim and inject the Clexane and his little heart cannot handle her hurt and her crying... Miggie I will give you time to come to terms with it and then you need to come home... I miss you and I can tell you your sister misses her hero...

Day 22 - 22nd of November

I have realised something my Kezzie is in that broken body and parts of her are intact...her little friend came to visit today and she was self concious and frustrated due to her limited movement...she also cannot handle to many people around her and it puts her in overdrive and destresses her when there are too many people and too much noise...I have toned down completely to adapt to Kezzie's present situation.... yes dad get down on you knees and thank God after all these years I have found my volume button on my voice...Miguel, bless his heart, is going around and making me show my muscles I am developing to all his friends... my biceps are toned and when I wave there is no obtrusive loose skin that waves back at the bottom of my arm... such special blessings we get as we get older :) ...I think I will soon be competing with Batista from WWE... wrestling here I come...I have realised something that I have a defense mechanism that has kicked in that once the day is complete I dont look back and only look forward... no dwelling on yesterday only focusing on today and no looking with earnest for tomorrow...it helps focus on everything you can do today and keep to that and dont look back with regret and dont look forward with expectation and do all you can in that one day, today....

Day 21 - The first night at home 21st November 2009

Well we have survived the first day and night at home...I am carrying Kezzie whereever she needs to go as she is like a rag doll at this stage...My home is not rigged for this situation with stairs everywhere but Kezzie I will carry you by myself to Cape Town if that is what is needed...I will strap you to my back and we will see the world if that is what is needed...You just get better and mom will be the strength, your spokesperson, and your legs for you....Kezzie did not eat and drink much yesterday but I think it is because she is not used to her environment...any change in the environment even if from Hospital to our home would scare her and make her insecure...dont worry baby I will be your lighthouse in this violent storm, keep your eyes focussed on the light shining from mom...together with God we will make this journey... a bible verse comes to mind that I remember from years ago... I can do anything through God who gives me strength...I am going to cling to that and baba you cling to mamma...this is the most hectic life lesson I have ever had to endure and I hope that, no make that pray that, I will never encounter such heartache and fear and despair again...Kezzie was joined to me in my tummy by her umbilical cord and watching how she is, is ripping my heart out...

Day 20 - 20th day - Homecoming....

Good morning my bunny today is the day you come home.... I am filled with fear as I will be all alone and caring for you with no staff to help... I hope all is going to be ok...I have been taught how to give you Clexane injections twice a day to thin your blood and you need 7/5mls of Epilim 3x a day for seizures...God please help me that nothing goes wrong while she is at home with me... Baby girl your feeding tube comes out and you are going to leave the hospital room and finally go home... I am so proud of you look how far you have come...it can only get better from here...I am so glad to have you finally come home...who would have known 20 days a go what was going to happen... thank goodness for miracles...Feeding tube is out and you are so impatient to go home...patience was never something you had...cutie pie...basically trying to climb out of bed...Daddy is coming to fetch us and we are taking you to my home...we are home and trying to get used to having to adapt to new challenges....oumie and Mig's have arrived and oumie has bags of goodies...Miggie is seeing you in our home environment for the first time and I can see it is difficult...All 3 of you are sitting on the couch, Mig, you and dad... and all together chatting it is so beautiful to see...I am running around and trying to settle everything in my Virgo mind...not so easy... I can see you are battling Nunu to come to terms with new surroundings that are not the hospital surroundings... be brave it will all work out...it's night time and time for medicines...Migs is sleeping with us tonight but we have had one hiccup already with food...Mig's wanted hamburgers that oumie bought from Woolworths and Kezzie cried because she also wanted to eat that..he was so upset he would not eat and cried...this is difficult on him too...this started a cascade of tears and venting...Miggie wanted to know why everything always happens to us and I honestly could not answer this question...he was sobbing and Kezzie was crying because of her situation and she was saying she will never get better when asking questions ...they are both crying and hurting inside as this has affected both of their lives so drastically...this is life altering...so I let them cry ...tried to comfort them and then we prayed together... I have also decided that I will not give Miggie more responsibility than he had when Kezzie was ok as he is going through enough already without piling more on him because I have twenty times more to do...it is not fair...he can participate in her therapy and help me now and then but I am not going to pile it on him that it has to be done... he is only 11 and still just a child and needs his space to be a boy...I love you both and I am blessed to have both of you under my roof tonight...thank you Jesus for your hand of protection over my little family...keep your hand of protection over us as we go through this journey...my headstrong boy and girl and lets not forget their mamma....Thank you for your blessings so far...

Good night Nunu sleep tight tomorrow we are going home...

Her last feeding bag - 19 November 2009

Day 19 - last night with feeding tube

Loving Tobi

Kezzie's last night in hospital with Tobi her toy dog

Last one for day 15

Day 15 - yet another pose with dad

Day 15 - Posing with dad!

Day 19 - Evidence of Kezzie finishing the bowl of chicken and mash

Day 19 - 19th November 2009

Kezzie has had the Neuro surgeon come yesterday on day 18 and she said if all goes well we can take Kezzie home tomorrow being Friday - day 20 - this is effectively my last night of sleeping in the hospital oh hallelua - I will be sleeping in my own bed tomorrow night with Nunu right next me... we have a loft bedroom that everyone has been sleeping in - they each have their own room but they feel more comfortable with sleeping with me.. so nunu next to me and Mig at the foot of my bed and we have been doing that since 18 months ago...they feel comfortable and safe and I dont care what people think and say...these are my babies and we like it this way...so what I have asked the staff at Croco lodge to do is move my double bed downstairs to Mig's room so that all 3 of us can sleep there now...as I will never be able to carry nunu up and down the stairs...so everything is prepared at home and I have started packing up her room at the hospital we are getting ready to leave...still only on night feeds and we will do our last feed on night feeds tonight and then the feeding tube will come out...oh what joy...this feeding tube has been a nightmare...she once sneezed the whole tube out of her nose...her sneezes might I add are quite scary she literally goes into a sitting position when she sneezes bearing in mind she cant sit ...so it's quite a hectic sneeze...and she would not let them put it back...every time they tried to put it back she would push it into her mouth...this feeding tube does not hurt when it goes in but it is not comfortable as it is a tube that goes in the mouth directly into the stomach...at that stage of the game it needed to stay in as this was her life source for food and medicines like Epilim and anti acids and laxatives were given through there as she could not swallow ...she had the drip on for the electrolites and extra water and for the cortisone to go in...back to the story...the tube came out and she would not let them put it back...so I sat on the bed and looked her in the eye and explained exactly why we needed the tube back and that I would be with her every step of the way...they came back in the afternoon and we prayed over Kezzie, the nurses and the feeding tube and I spoke her through it and praise God it only took one attempt and it was in and she was so brave.....
The drip comes off today and Kezzie has made impressions with her hands on a type of styrofoam as she will be getting hand braces she needs to sleep with to stop her hands from curling...
Today she ate:
7:40 - 20mls sweet tea
- 40mls pediasure
9:00 - 20mls pediasure
9:31 - 7tsp Pronutro
11:00 - 60mls juice
11:18 - 5tsp Flamby
13:20 - 20mls juice
13:50 - a whole bowl of chicken - whooohoo Kezzie you rock!
- a whole bowl of mash - another whoohoo!
- 1tsp pumpkin
- 18tsp custard
- 10mls juice
15:15- 15mls juice
16:40- 20mls pediasure
17:10- 20mls pediasure
18:10- 65mls juice
18:20 - 10tsp mash, 2 thirds of a bowl of mash, 20mls juice
20:15 - 15mls juice
20:45 - 10mls juice, 7tsp mash and carrot (that came from the food that mom had brought me to eat

We call the pediasure - Monkey Milkshake and she loves it and it is only for her the little monkey...it is a supplement filled with everything needed

Day 18 - 18th November 2009

Today we are eating even more...

08:30 - 20mls juice
- 20 tsp purity
09:00 - 20mls juice
11:34 - 9 tsp yoghurt
12:30 - 20mls juice
- 14tsp chicken, 10tsp mash, 4 tsp broccoli, 15tsp flamby
13:09 - 5mls juice
14:06 - 8tsp chicken, 6tsp flamby
14:20 - 40mls juice and 20mls pediasure
15:15 - 6 tsps mash and chicken
15:30 - 20mls pediasure
16:00 - 20mls juice
17:40 - 20mls pediasure
18:15 - 5tsp mince, 10tsp mash, 1 tsp broccoli, 20mls juice, 12tsp strawberry mousse, 5tsp ice cream
20:00 - 20mls pediasure

She is only doing night feeds now with her feeding tube... she has definately got all her taste buds as I tried to mask the pureed broccoli with cheese sauce with the chicken and she tasted it and would not swallow and when I brought a spoon near her she would check first before allowing it into her mouth...in order to get the one spoon of broccoli in her mouth I made Miguel eat a spoon and say mmm it's nice... he nearly died....thank you my boy for taking one for the team ...Love you...

Day 17 - 17th November

We are on puree and I wanted to show her daily input as this will just show you how determined she is to take the her feeding tube (For some reason the spelling of this word has eluded me I spelt it chube...dont worry it came back) out. The doctor has told her that if she eats well and the tube is out she can go home..I have kept a diary of what she ate

7:19 - 60mls sweet tea
- 20mls juice
8:00 - 15mls juice
8:35 - 15mls juice
9:48 - 5 spoons porridge (Jungle Oats chocolate porridge)
10mls juice
10:09- 3 spoons cupcake (I warmed it in the microwave and then it went all soft)
- 20mls sweet tea
10:45- 20mls juice
12:19- 20mls juice
13:25- 5 tsp mash, 5 tsp soft pumpkin, 16 tsp mince
- 20mls juice
14:17- 20mls juice
17:15- 20mls juice
- 7 tsp chicken, 2 tsp pumpkin, 2tsp mash, 5 mls juice
18:45- 20 tsp chicken
- 30mls juice
20:00- 10mls juice and 10mls water

Please bear in mind that all her food is pureed and liquidised at this stage..and knowing that on the 13th to the 15th day she was doing about 20mls of liquid and on the 16th day she ate pumpkin pureed a whole bowl and they uped it to this on the 17th day...she had to have been sick on the 16th day or desperate because my angel does not like to eat vegtables which you could clearly see by today as I had to put the pumpkin in with a huge struggle...

Day 16 - 16th November 2009

I wanted to break down to days here as this is where Kezzie starts drinking and eating - she has started drinking 3 mls of juice or water at a time bearing in mind that she has her feeding tube in and is fed through it 24 hours (continuous feed). We have been feeding her with a syringe and we spray it into her mouth - she gets very tired even drinking the 3mls at a time as this is hard work for her to swallow. The speech therapist explained to me that it is more dangerous to drink liquids than it is to eat pureed food as the liquids work easier in the front of the mouth but are more difficult to swallow and the opposite occurs for pureed food...I am very careful feeding her with the syringe as her gag reflex comes and goes at the moment and I dont want her chocking... they are constantly monitoring her tempreture as if her temp picks up the liquid is actually going down the wrong pipe and into her lungs and causing an infection... so far so good... Kezzie only has a bit of front tongue action ... the sides of her tongue are not working at the mo and those you will need for chewing harder food...I am learning so much about your mouth and how important some parts of your mouth are...Kezzie is pushing and wants to get better and she is so brave... she takes what is given to her and she works with it...Kezzie looks at the syringe with the 3mls in and we give her 0.5mls at a time and she does not stop till the syringe is empty...she has my determination and it makes me so proud...