Due to having 3 Immune Deficient Children ages 9, 3.5 and 7 months. Life already comes with juggling when it comes to the health, well being and choices we need to make for our everyday lives. Simply we are not your average family. Although we look no different from the rest.
When Amber was younger, the only way we could live with minimal effect on our family, health wise and reducing Hospitalizations. Was to Isolate. Have her go nowhere. For nearly 2 years Amber, Only ventured to the hospital or medical clinics. She was kept home, with in our own section, Hand sanitizer at the door. Isolation robes, and gloves at the ready. All people that came had to be of well health.
We had come to this point in our lives as sadly, when she was younger, when ever we ventured out, to a place with other people, air conditioning? enclosed spaces, she would sub come to some type of illness.
I remember she had a ear infection in November of 2011. She had been home for weeks. I ventured out with her to the local supermarket. Placed her up with in the trolley, like any normal child. Went about my excursion purchasing food for our family, for that fortnight. Having fun, blowing raspberries and talking along the way.
That evening at 11pm things went down hill as you shall read in another blog entry i will be making.
She ended up with Bacterial Meningitis.
From that day forward, we had to put into place procedures, and things to help keep us as a family, as a whole, and away from the needles, treatments, illnesses that cause damage.
A year ago we slowly put down our barriers, and slowly started venturing. Slowly and Surely. First trip was to a small rural playground, on a scorching hot day. No other children were around. We had fish and chips, bread and butter with lots of sauce, while we introduced amber at age 2, to a children playground.
For 48 hours after, the fantastic fun filled play, that brought us all smiles, and happiness. I stayed weary, uneasy, watching her every sign, trigger. Anything out of the ordinary i was to note. 48 hours passed, and we were clear. No illness, no midnight runs to the hospital! The most amazing feeling !
Amber wasn't the only one isolated. A parent had to be with her at all times, due to other issues going on also. This meant my movements were restricted. My outing was the supermarket, or a dairy run for bread alone or with one of the older children. Visitors to our home were limited, thank god i had the internet and phones. As well as the man working on the land, on the farm we were sole managing.
With out that job, we don't know how we would of done it. As when it was needed. The other children ( Primary School age) were able to get a school bus to and from school. So no matter what, i was not needed, or expected to sort school attendance. After school and before they would go with dad to milk the cows if we were in hospital, and help on farm. I could be away for 1-2 weeks at a time.
They didn't mind working so much, as they got to spend time with their dad, and learn some good skills on the land, what farming is supposed to be. Family orientated. When i could i would help out too. Loved every moment, out in the fresh air, around the animals. As a Family.
This meant alot to me as a mum, it is hard enough to have mum and a sibling away, but to know our other children and dad were still together, as a unit, made it that much more bearable for me. They still were having their quality family time, like it should be for any farming family. The children grew a lovely bond with their dad over these times. They knew i missed them terribly. I was not in this alone, It was not just Rod and I enduring these roller coaster moments. These children had a part in this path as much as we did. It kept feet planted and life in check and at least some of my family together.
The Older Childrens School they attended back then, were good. We met with them and explained the Health situation for our family, and gave them a information pack. We asked them if they could please contact if there was a small outbreak of anything, for us to make the executive decision as a family, with health professional guidance. As to how to protect our family as much as we could.
Nothing is fool proof. We will still endure illnesses. But the frequencies or severity could be limited with everyone working as a team.
Slowly we ventured out limiting where she went. Town trips in the summer in the pram, if we went into the supermarket or a enclosed place, most the time she had a rain cover over her. You wouldn't believe the amount of people that thought it was OK to put their hands into a childs pram, in front of their mother, and touch! Even at over 2.
The first time we allowed Amber to walk, holding our hands out and about was when we were on our family holiday. We had Hired a Camper van to travel around the Central North Island in. Seeing sights, and keeping our family as safe as we could from bugs. This deemed to be extremely interesting. We all came down with the flu, ended up paying a fortune at after hours in a completely different city, with our medical copies in hand. Introducing Immune Deficiencies to Random Medical professionals, who were extremely good, and took it very serious. Dished out Antibiotics to the children in question. All the while Rod and I thought we were OK, we could wait till we were home. She was then Limited back into her pram.
( funnily enough us strong oxes ended up with chest infections and pneumonia too and got dished out antibiotics Once we saw our own doctors. Lets say, we haven't tried to venture out on a family holiday like that since )
There were a few people we would go to visit, and close friends of ours were extremely understanding, that if there was even a tickle about. They stayed away, vice versa.
Amber was put on prophylaxis antibiotics. Via her Immunologist. This was to help act as her " Barrier" like a artificial immune system when it comes to encapsulated bacteria. The bugs that she could not protect her self from like other people with normal working immune systems.
She had extra vaccines in this time, and slowly and surely, we were able to slowly extended what we did, and when we did it. Slowly building a more normal life. Had Occupational Therapy appointments, Audiology appointments, SLT appointments, early intervention, In this time she started going to a friends house once a week, freeing me to do Incredible parenting courses, Hannen courses, to help her. She loved going. Precautions were put into place with her career too and it was lovely to see her interact and do small things to help, like hats on head, washing of hands after playing with the animals, watching what she was fed, and making sure she had shoes on her feet when venturing outside.
It was a hard, lonely lifestyle, full of emotional roller coasters, Up and down health periods. Yet with support and understanding that out situation was not normal, although she looked fine. Helped alot....
We made it
Just before amber turned 3, we made the huge choice to try her at Kindergarten. After discussions with her Immunologist. Meetings were held, with early intervention and Kindergarten. Information packs regarding her condition were shared. Medical notes made, hand sanitizer, iodine swabs etc were all discussed and we all had a plan in place. Our girl was growing up. We were going to try the scary " preschool" path.
(for a few years we were not even sure she could attend kindergarten let alone school. As no matter where we went, i seemed like bugs would jump out of the cracks and get her, no matter what we did.)
It worked, she attended, with only small short hospitalizations. This gave me time heavily pregnant with Abigail , to relax a little, and have amber socialize, and learn to get along with her peers. She was isolated from society for so long.
Had AMAZING teachers. All alert, and took her medical situation seriously. Best part was a very good close friend worked there also, so knew our path very in depth, so was extra vigilant with her.
Feb 2012 ~December 2013
