Keziah's Journey

Wednesday, December 9, 2009

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...

Wednesday, December 2, 2009

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...