Today is a 'Winnie the Pooh' day...

Washing is on the line, temperatures are soaring and I keep nipping out to check the status of what's on the washing line and what has blown off.  Today is a real blustery day with winds whipping up all around...the type of day that women don't wear skirts or dresses and where anything may be blown away.  After a storm last night....yahness....the ground is damp and soft under the feet, just enough for Molly to be able to dig with her nose to bury her bone.

After 9 hours of sleep,  this morning I felt as fresh as a daisy.  So much sleep in one night is pure luxury for me and only held sweet dreams.  This after working myself into having an enormous headache, worrying about the disappearance of Smokey.  All day long I called him, not a meeuw was heard and when Johan arrived home, who should he see lying on the flat roof?  Yes Smokey!!!!!  He didn't move though when we called to him and spoke to him, he just lay there, which was mighty strange....but Johan hauled the ladder out and climbed up to fetch him.  We think he didn't move because he was petrified.  He clung to Johan, claws out and was very nervous when Johan handed him down to NiQi who was waiting on the ground.  How he ever managed to climb all the way up there we have no idea as being totally blind in one eye and partially blind in the other, he does not venture far these days.  Obviously too scared to try and make his way down, he just lay there all day.  Today he is sleeping on the floor of the dining room, safe and sound on terra-firma.

Now to cover more boxes and start on our community project of making up Christmas gifts....just as we did for the Santa Shoebox Project, only these are for the elderly right here in our own area......then to start making up kits of my Christmas tree decorations to take to an art shop in Pretoria to sell.  Much to do so I better get cracking.  Toodle ooh for now....

Smokey is missing!!!!

The last I saw Smokey was early this morning when I woke.  As with every other day of his life, as soon as he hears the alarm in the morning, he gets up and sits in the passage for me and then after I have let out the dogs and fed him and Rolo, he goes out the front door.  Whilst I'm occupied in the kitchen over the next couple of hours he regularly comes in and goes out again until about 7 am, and then he finds a spot either on the couch or one of the beds, makes himself comfortable and sleeps the day away.

I have been calling and calling, but he has not turned up and now Rolo has also noticed he is not around.  I hope he arrives home soon as I am beside myself with worry now...

Time for a 'tune up'?

It is amazing how quickly time passes us by and we notice it more than most I reckon, counting most often in 3 monthly intervals.  This because it is usually about 3 months between admissions for NiQi and leading up to her going in there are certain little tell tale signs that we notice as indications of her needing to have a 'clean out'.

Her chest becomes filled with mucous quicker and she has difficulty coughing it out.  She sleeps more restlessly, tossing and turning, not being able to fall asleep till later at night.  Her appetite decreases, not feeling hungry and has to force herself to eat and drink her shakes.  She becomes more breathless and battles to keep going, pushing herself to do more.  She finds she needs to use the oxygen more frequently and for longer.  All these things about her daily life tell us that the days are getting closer to her being admitted for treatment.


Next Wednesday, she has her next clinic appointment and I am sure her doctor will decide then when will be a good time for her to go in....and if planned well she should be home and on top of the world come Christmas time.

                              
                                               looking after herself in hospital

                              

                              
                                                       using the physio vest

Harmony and Horses

Well we don't have too much harmony with the horses at the moment and purely because NiQi and I are quite frustrated with having to walk soooooooo very far every afternoon to find them.  They have access to every available bit of space at the moment on our neighbours' property as there are no gates closing off the various fenced areas.  They walk in and out at leisure and I guess they have a plan each day, where they walk up from us along the now well worn path that they have created, and proceed to go from one camp to another, going further and further away until by the end of the day they are in the furthest camp of all.

NiQi and I bought rope and yesterday tied off a few sections hoping that it would stop them walking so far....alas to no avail.  Lunch time today, I took a walk to see where they might be and already they were chomping on the most delectable grass in the furthest camp from us.  I let them be and came back home....

So later this afternoon Niqi and I will have to change our strategy and close off different areas...this time using more rope, much more rope, and I guess we will have to criss-cross it so it makes it more difficult for them to push their way through and under.

The fact that they walk so far away from us every day isn't the only reason that we want to keep them contained to certain areas though, it is also because our neighbours' place, sadly, isn't as neat and tidy as ours.  There are pits of broken glass, cut wires lying in the open grass and plenty of thorn bushes that they pass between and scratch themselves on.  Every day we noticed another scratch on one or other of them that needs to be doctored and they are tending to look quite scruffy and neglected, when the reality is, that isn't so at all.

If it wasn't for the fact that at least they have more grazing than us, then we would opt to keep them home.  I certainly hope that with the couple of days rain we have had so far, our grazing starts to recover soon....and will grow quickly so that we can get back to having harmonious horses....

This is the fence that our flock of sheep were herded through when stolen last December

Santa Shoe box Project

The Santa Shoe box project is now well under way.  Three days of collecting pledges throughout the country has seen thousands of boxes coming in for the under-privileged.

Last year we made up boxes and delivered them to the other side of Pretoria and this year our options were wider for a delivery closer to home....quicker for travelling and less in fuel...lol

I must say it has been more difficult for me to collect shoe boxes this year, not having bought any shoes....how sad is that...and every where I went to ask, they either told me they destroy the boxes of shoes packed out or shoes these days are delivered in bulk with no boxes.  Thankfully I managed to find 7...yes I know I said before that we had pledged 6 boxes, but my finger must have clicked on an extra name as when I printed out the labels, there were 7!!!!!

Always having plenty of Christmas gift wrap in the house didn't pose a problem for wrapping, it just took time. Each box must have taken at least an hour to do, but I wanted to make them look neat and well worth wanting to open....after all these are for kiddies who live in homes and have very little other than the basics offered by the homes.  Shopping was both exciting and stressful, haha...exciting because I love to shop for others and stressful because I had to be quite frugal whilst making sure that each box was filled with what was on the check list.  The check list included clothing, toothpaste, tooth brush, soap, face cloth, toy, something educational, sweets and anything extra we wanted to put inside....not that there was any space left in the box after packing all that in, but exciting it all was.

We delivered yesterday morning and this year they took our details to invite us to the parties where they give out our presents.  I hope it will be on a day and at a time when we can all go as I would love to see the faces of the 'littlies' that we made up the boxes for....oooh I hope they will be as excited as I am.

NiQi with the first two boxes

each box has a label with the child's name and age, who it is from and contents...

all 7 boxes

poster for the project

sign outside drop off point

information table

giving our details for the party

some of the boxes collected that morning

ladies packing up boxes with goodies dropped off

helpers 'checking in' the boxes

working behind the scenes

30 Day Ab Challenge

The fact that NiQi is doing so well at the moment is all the more reason to exercise as much as she can in order to build up muscle mass and help gain weight.  Theses two things factor very high in preparation for a lung transplant.

When she was a little girl and right through to her early teenage years, she was very active...in fact as a toddler she was almost considered hyper active. From the minute she woke in the morning till she laid her head down on her pillow at night, she just didn't stop.  She was climbing trees and fences, she couldn't walk anywhere as she was always in such a hurry and would run all over the place.  I would wonder where the little girl was that I dreamed of, playing with her dolls...dressing them up, putting them to sleep, combing their hair.  I still have visions of her pushing her dolls pushchair around the outside of the house so fast that the 'baby' inside was bobbing up and down and when it did fall out she picked it up and threw it inside...there was definitely no mothering nurturing going on there by any manner of means.

Always keen to play with her brothers, especially when it was cricket time, she didn't care that she was always the fielder, running to fetch the ball and tossing it back.  She played so much cricket with them that she gave her peers a run for their money when she participated in the Bakers junior cricket matches...the only girl in the team.

Athletics was her forte...short distances she claimed first place over and over and over again.  Her long legs helped her to get over the pole when she did high jump as well as gaining distance in the long jump.  The only sport she really didn't excel at, was cross country....just too much for her I egged her on each week and every step she ran she hated, gasping for air and ready to give up she persevered ...but finish she did.

She participated  in netball and was an excellent goal shooter...again her height stood her in good stead and by practicing with Matthew's basketball net, she managed to aim that ball in the net over and over again

Hockey was another sport that gave her a bit of a challenge, playing back, she didn't have to run too much although if the game became too boring and play was too long in the other half of the field,her mind would wander and she would lose concentration....haha

Swimming, of all sports was her favourite and if we had a pool here she would now more than likely be in it every day of summer....swimming like a fish, diving to the bottom of the pool to pick things up off the bottom and dive bombing with Matthew kept her busy.  She would stay in the water till she was purple and wrinkled and then would still want to stay in much longer....

These days she doesn't do much more than groom her horses and ride every now and then, so to gain muscle mass is certainly a big thing for her now....hence the decision to start with the '30 Day Ab Challenge'.....to keep herself motivated she has opened the challenge to anyone who wishes to do it with her, and Johan and I, together with Matthew and Jess, Sara and Paige and Seanagh....all doing it long distance, are keeping her company.  Day three happened today and boy can I feel my muscles working....30 days!!!! Ai Ai Ai...I'm not too sure about that.....

Pre Christmas Thoughts

It's almost the end of October and making up these Christmas boxes for the Santa Shoebox Project made me think I better start getting my act together for us this year.

I like to dream...I'm a big dreamer...of the things I would like to give my family and friends as gifts for Christmas, but as you can imagine the last couple of years have been quite tight with money.  Gone are the days when throughout the year I would shop and if I saw anything that reminded me of a friend of family member I would buy it and put it away for later.  I had a kist always full of goodies and I would take great pleasure when it comes close to Christmas time, unpacking it and with delight remember all the shopping trips I had when I saw everything inside.  These days the kist is only full of wrapping paper, gift bags and ribbons...waiting to be used on anything that may come along.

So today I thought I would surf the web, haha, and look for ideas for people.  Mentally I made a note of those who are on my 'shopping list' and as I typed in different titles to search for I scanned all the pictures and clicked on or downloaded any that looked vaguely interesting.  I now have a folder on my stick which is brimming with great ideas.  If I really get myself well organised I can hopefully get them all done...especially those that need to be posted overseas, or be taken down to KZN.  Those that are for Pretoria area can be made right up to the last minute, but still I need to get cracking.

I remember for many years I made Christmas tree decorations...I started the year that Matthew was born, that was 1984, and every year until he turned 18 I made them.  They all started off being made in felt and over the years I adapted them...found quicker or easier ways to make them, decorated them differently...and then later I introduced others....beaded ones and some made with pegs, others with pom-poms and more were then knitted.  There are a couple of friends who every year, if we see them at Christmas time, remind me that they still have the decorations they bought from me so many years ago.  Come July, out would come my felt and pattern pieces I drew up and I would sit every day cutting, stitching and decorating...all are hand stitched so it isn't a quick production line, but each one I finished I would look at with pleasure.  Maybe I should think of some new designs and make a brand new range...hmmm that's a plan.

But for today, I have my folder with gift ideas and now all I have to do is look through my crafty bits and pieces, do a bit of re-cycling, raid Johan's shed for wood, nails, paint and glue and then I can get cracking.....

                                      

Listing For Transplants...

Since NiQi was first told on 7th August 2012 that her lungs are in what is considered, 'end stage' and she should now seriously consider going for a lung transplant, we have had many friends who have asked and continue to ask when she will have her transplant....what they don't seem to realize is it has been a very complicated matter which grew more complicated by not being told all the facts right in the beginning and our own personal circumstances.  This has unfortunately caused delays in the process, although I have to admit that since then her health has improved in certain areas, which has only done her good and is all good news for her eventual transplant.

Just 8 months earlier her left lung collapsed and she had a drain inserted.  Her doctors first broached the subject of a lung transplant then and set up a meeting with a doctor in Johannesburg for a month later. She kept the initial appointment with the specialist pulmonologist and saw him in January 2012.  After consulting with him, he advised that she would most definitely be a prime candidate for a transplant.

He discussed the fact that she would have to pick up weight and also build up her muscle mass before undergoing the operation, those were his primary concerns at that stage..... and then we spoke to him about cost......  It's amazing how, before you go to see someone about something, you have all these one sided conversations in your mind and everything works out the way that you see  it or envision the situation to be.  So, as I said, we broached the subject of cost.  We were in no way prepared for him saying that she has to be on a medical aid before they will consider it!!!!!!  We thought we would fund raise and approach places like the local radio stations and the whole nation would open their hearts to our child and her need for new lungs.  Medical aid did not feature in our plans at all.  So you see we came away from that first meeting blocking out 'medical aid' from our minds....we were focused solely on fund raising, which actually has not been as easy as we imagined and although we have had so much support from people in the last year, it hasn't been anywhere near enough...yet!!!!  We left him with no follow up appointment suggested or made so were 'in limbo' with the whole concept.  In the interim NiQi continued to see her doctors in Pretoria and that was it. I always thought that doctors refer you and you continue to see the new doctor and you go from there, but in NiQi's case it didn't happen like that at all.  She was referred, she saw him, he gave advise and that was it.  If we somehow missed the boat along the way, we weren't made fully aware of the next step.  Then July/August 2012, NiQi had such a bad set back that her doctors in Pretoria asked us how far we had gone with plans to put her on the transplant list????? (It was only then that we heard that the REAL and ONLY reason that NiQi is required to be on a medical aid is because of an executive decision made by the transplant team themselves.  There is no law and no hospital policy, it is the doctors themselves....this after we had spent months writing letters to government and the Minister of Health and the presidential hotline and finding nothing in the act to say she must be on one to have the transplant.)  

It was to be honest a terrible year for us in more ways than one.  Johan's contract was not renewed from the end of December 2011 and as much as he tried to find new employment, he wasn't able.  Everyone kept telling him what a wonderful CV he had, they were all so impressed, he was made promises, wrote aptitude tests and each time heard no more.  Suddenly we were faced with NiQi's failing health and no income.  I felt desperate for Johan who has always worked so hard to provide for our family, suddenly feeling so worthless.  For 11 months I kept boosting his morale at every opportunity, telling him to be positive, urging him to keep on trying and listening to him and getting excited for him at any little thing that showed promise.  At the same time I was trying to keep NiQi positive, helping her with exercising and physio, urging her to eat, making up her shakes, keeping an eye on her meds, nagging her, nagging her and nagging her some more.  The doctors didn't know and still don't know about our financial circumstances.  They didn't understand why it was so difficult for us to put NiQi onto a medical aid and couldn't see why we were stalling when they had told us how important it was for NiQi to have a transplant.  I was in tears that day and pride prevented me from telling them what was happening in our lives.  But that was when we decided we couldn't wait any longer, but we would do both, fund raise and put her on a medical aid.  The fund raising was and is two fold, because although Johan is now working again on another contract, the money he earns is less than half what he was earning before and sadly we fail our child by not being able to afford to pay the medical aid fee every month.  I am sure there are many out there who will never understand our situation, but lets face it, medical aid is a luxury these days and unless you work for a company that help with your monthly contributions, or you are earning much more than the average wage, then to find almost R4000 a month is a big deal.  We have swallowed our pride and humbled ourselves and noticed the looks and the raised eyebrows and only our immediate family have known the real story.  So I am telling you now in the hope that you will understand why it has taken so long to get the ball rolling....and even though NiQi is now on a medical aid, we have yet to have a month where there hasn't been a problem to sort out.

That though is only the beginning of it all....now that she is a member of a medical aid, she has to wait out a years exclusion period before she may put in any claims for anything related to her cystic fibrosis.  Thank goodness we have the fund because that pays for all the extras as well as her monthly contributions.  Only then may she be listed....don't think that is a given though.  The doctors' decide whether she is ready or not, and only once they feel she is is will she be listed.  She has to still gain weight...a battle that continues.  Even with her PEG inserted, every gram that she gains, can and does get wiped away in the blink of an eye every time she picks up an infection, only to have to start all over again.  She has to gain more muscle mass and there are days that she is so tired that she has to visibly force herself to do something.  Nothing is easy and it takes a lot of effort on her part to do all this...I can easily eat a slab of chocolate or a piece of cake and think nothing of it, but for her to wade through a row of chocolate pieces on a slab is a huge effort.  I can walk up and down, carting 50kg bags of fodder and only then get tired, but for her to even imagine walking back and forth with purpose some days is too much.  NiQi, like Mark, knows how to put her best foot forward, ever cheerful and always 'good', only Johan and I are privy to what goes on behind closed doors....I think I have more photo's of her lying on the couch than doing anything anywhere else...lol

So I hope this answers some of your questions, there's just so much more I could write...but that will make a book....

sorry...this is upside down and I don't know how to turn it here!!!

another one...but you get the picture!!!!