Wednesday, 21 December 2011
Its been a fascinating journey since I started working. There's the whole leaving, being organised, child ready and prepared for what may lie ahead for the day...but that's just a side-line and can be as big a deal as you make of it (I think!!!!).
What's been interesting to me, is people's responses to the fact that I'm now formally working after 19 months of being at home (or in hospital should I say :) ). I get many 'congrats, so great that you ready for that now', 'must be so nice to have some other stimulation', 'so happy for you that you can have a bit of your life back', 'you've done so well so far, time for a bit of a change'. I've found it quite strange trying to process what people perceive that I may be now, or the point I've reached, or whatever else they thinking.
Truth is, I wasn't looking for a job. It just happened. It happened quickly too. No time for planning, preparation, organisation and all that. I'm ONLY doing it, because I'm so interested in the work...and the financial benefit is an enormous blessing to the household.
I feel like others are defining me as something different now because I'm working. I don't want to be defined by what I do with my time, but by who I am. I don't want to be defined as someone with a special needs child, who's working half-day...I want to be defined as a person with real character-traits, with a sense of humour, who cares, supports, loves, enjoys life. That's other, but most importantly, I don't want to feel I'm more valuable now that I'm working, I want to find my security in who I am, not by what I do.
**Yes, so on the side...I enjoy the work. But it does come at a big cost. Katelyn needs lots of particular, specialised attention, and her medical needs in the past few months are incredible difficult to keep on top of, so it creates a general average state of chaos in the household. Without my amazing husband, we'd be nowhere. Who knows where the year ahead takes us, but as long as we're true to who we are and what's important, that's my true desire. **
17 And your life will be brighter than the noonday; its darkness will be like the morning. 18 And you will feel secure, because there is hope; you will look around and take your rest in security.
Tuesday, 15 November 2011
We deal with significant constipation issues, a mixture of contributing reasons: post-op (the effects of so many very hardcore drugs-morphine,anaesthetics etc in a short space of time), muscles just not strong enough from the low-tone with Down Syndrome and then the fact that she's really not mobile at all, so when she starts to move around it'll get much better I'm sure.
So here's my list, starting with the most natural things, the things I've learnt from various doctors / physio's / specialists...and the progression that I take (daily) when figuring out at what stage of the process Katelyn is at...the joys :)
*I really may have left something out...if I do...I'll add it in another day, so forgive me!*
**Obviously, drinking the right milk and eating good healthy foods(not processed/refined) is an essential**
Natural, non-medicated options:
To mix a teaspoon into food daily / twice daily. Has so many other benefits too.
-Fruit...like prunes, peaches, paw-paw
Fruit-fruits that help your bowel move. Be careful, if she doesn't drink enough, high fibre fruits require lots of liquid to work successfully, otherwise it has the opposite effect (apple, pears, banana's)
-Bathing or sitting in warm water
So good for the stomach and bowel, relaxes it
-Water and sugar water....always good
These are not medicated, your body doesn't become reliant on them in any way. They only release the 'plug' if there is one.Can give multiple a day.
To the next step:
Laxette is not a laxative. It just helps soften the stool, it doesn't make your gut move. Katelyn is on a very high daily dose of it, and I am continually re-assured that she will not become reliant on it as you would if you took a laxative. Can give a really high dose - though can end up in cramping and discomfort.
Pegicol seems to be far superior to Laxette. Sachets that you need a prescription for. The trick is, they need to be taken along with enough liquid for it to bind itself too. So unless Katelyn drinks 150ml minimum when giving her a pegicol, it can have the opposite effect. When she is very bad, she unfortunately doesn't drink much, so I often have to rely on Laxette and not Pegicol as I probably would prefer.
This makes the bowel work. Katelyn seems really uncomfortable when I give her one, but I have to do it often. Preferably only every second day, and not for an extended period.
My new next step to avoid hospital:
-Enema(1/2 adult dose)
Not even going to go into it...
If no luck...then back to the doctor, x-ray....then hospital admission for a washout....
**Thanks...I needed to get my head around it again. I'm so full of medicine schedules, that sometimes I forget to apply my mind to this daily, as its really (for me at least) about daily staying on top of it if possible, otherwise she stops eating, drinking and it only gets worse. **
Friday, 11 November 2011
Sunday, 25 September 2011
- 2 (3 kinda) heart surgeries done and dusted...lots of sickness inbetween, but I don't moan that much
- almost packed away all 3 - 6 month clothes, but busting into some 12 - 18 items slowly
- Sitting, rolling, reaching, stretching...now just gotta get to crawling
- Babbling lots
- Just started having few sips of water (this is a big thing for my mom apparently!)
- Sleeping well when I feel like it
- Mostly smiling
- Eating well, eventhough I still am having 3 vanilla milkshakes a day (enjoying that because apparently thats going to change soon!)
- I love watching children play, rugby with my dad, shaking anything that makes a noise
Now i just want christmas holidays...
|Under the influence of my nanny|
|All I love to do is pull my right sock off...my uncle calls me the one sock wonder...|
|Giving mommy a small grin|
|Holding my ball with two hands...this is a big thing!|
|I'm just learning 'if you happy and you know it' song...|
|Mom trying to force me to point and push the button...its such a great tune, i'll do whatever she says|
|I'm super flexible too...love to eat my toes...and have my morning bed play|
Sunday, 11 September 2011
ICU Stay - 'til Day 13
Katelyn had her pacemaker operation on Day 7, it was a little rushed after all that had happened and the doctor said it would have been better to have waited a week. It would have given time for the swelling and fluid around the heart to reduce. Because of that, they struggled a bit to get the pacemaker leads in the right spot. Because of the compressions they had to do, her sternum had moved slightly, so she was opened up fully and it was all 'sewed' back together again. She was back on the ventilator for a day and a half. Then things started to progress relatively quickly, her drains, lines, tubes etc started to come out and she started looking more and more normal. She hardly slept a wink in ICU...eventually the nurses turned her bed around and let her watch the TV 24hours a day! I held her a few times in ICU, nerve-racking but special moments.
Moving on and out
Moving out of ICU was never something I was looking forward to. I know what life in the ward is like and was not looking forward to it, but by the time the doctors started talking about it, I was desperate to get there. I knew it was one step closer to home. It had to be done.
She was OK in the ward, very up and down. Very tired and weak. Her scar doesn't look great, its not as neat and clean as her scar from previous surgery and a few spots they want to watch closely. We're still really adjusting to how to hold her and the pacemaker. Its much bigger than you would expect (of you like us and have no idea about these things), and sticks out very distinctly just below her chest bone. Unfortunately because of the drains that were in, they weren't able to put it under the ribs like they often do, going to take-us a while to get used to looking at it!
Praise God I was only in the ward for two nights. Felt like an eternity, but I pushed the doc a bit to get out of there as soon as the significant milestones were met. Eating, drinking and her kidneys were working better.
So after two weeks in ICU and two days in the ward we headed home. After all that had happened, what a miracle.
|Day after the main repair operation|
|Swollen on Day 2|
|Day 4 - come off ventilator, very miserable, Dad trying to help comfort me|
|Back onto Ventilator after pacemaker operation - temporary pacemaker (on right) still plugged in and switched on|
|Finally mom gets her first cuddle...pipes and all|
|One of my 10minute sleeps in ICU|
|Dads first hold...|
|Smiling - have charmed all the ICU staff, they all want to take me home, but I have to go to the ward|
|In the ward and ready to leave|
Wednesday, 31 August 2011
Friday, 26 August 2011
She was delivered back to us in the ward,seriously miserable. The anaesthetist told us we could give her milk (considering she hasn't consumed anything for 12hours!). She devoured it.
For the next 2.5 hours she was totally miserable, vomiting from the milk (the nurses then said you not meant to give milk-ahhhh doctors!). When she eventually settled down, and the doctors had done their pre-surgery rounds, we headed to bed. What an angel, she slept so well when she was finally down. I couldn't sleep, racing mind.
Woken at 4:50 (madness!!!) for sterile bath, sister made Katelyn cry LOTS doing horrible unnecessary things, but after that she had her pre-med and became a cute little sleeping child.
Simon arrived at 6:30am, and 5minutes later the theatre nurses came up to get her. Simon carried her down, and we sat in the Theatre waiting area together praying for her, the doctors, the surgery and everything possible...then he had to hand her over.
After we had a few hours to catch-up on sleep(me!)and get to gym(Simon), we waited for another 2hours for her to come out of surgery. After 6 hours, she came out and we had a chat with the surgeon...all a little overwhelming, but the summary looks something like this:
- It was a complicated operation.
- Good closure of the holes and she is happy with them considering they were so big
- The valve was incredibly 'deformed' and a floating valve, she did the best she could with it and seems to be happy with the result
- Post-surgery her heart hasn't got a steady rhythm,so is on pacemaker for now and will see if it regulates itself,else she'll need a pacemaker which will be put in within a week or so
- (Katelyn's extra complication is an obstruction around the aorta outflow tract). The short version of the 'obstruction' is that she removed a small bit of tissue which seemed to help a little bit, but she's being very guarded of how the heart is going to respond. She did notice it made a difference when she removed the tissue, but she says it'll have to be something we monitor closely going forward.
**But for now we just sit in ICU watching our little one sleep and slowly wake, struggling with her hands tied down, and I can only imagine desperately wanting to rip out the million tubes all over her. **
God is ever faithful.
Sent via my BlackBerry from Vodacom - let your email find you!
Wednesday, 24 August 2011
Thursday, 18 August 2011
Thursday, 11 August 2011
**the complication remains a concern for him (an obstruction of the aorta), but he is hoping that the repair of the hole will indirectly fix it...so holding thumbs**
Wednesday, 27 July 2011
She's started SIGNING!!!!!!!!!! She's now doing the daddy and mommy sign - wow, a big improvement since this post on how we were so close yet so far. Its still very much work in progress, she can copy the two signs pretty well, but now we've got to work on her grasping the full meaning of the word with the action. So now for more parental discipline in continuing to add more signs (I've been so slow on this one!) and be consistent.
She's still only sitting. Half attempting to bring her legs up beneath her, but her shoulder girdle strength and arms are just not quite there to help her along. But when she's put in 'all fours' position, she can last a while now if she gets to concentrate on something. She is however much more stable sitting up, and is doing great with reaching and grasping objects around her.
Her verbal / social / communication skills are coming on nicely. She's generally very chatty, aware, interactive - loves to watch birds, kids, anything moving around her.
BUT...the most incredible thing, is how she's becoming a little podge pie! How it took us 15months of struggling, and all of a sudden in one month her cheeks are bulging, her arms fattening up nicely and her tummy a seriously cute little pot-belly! Hoping it's all a good thing for her up-coming heart check-up.
Here some recent pics of her activities (and those chubby cheeks!):
Playing with my friend Charlie...
At the beach with mom...she forgot my hat, so I had to use this one
I love playing with my shadow, moving my arms up and down and watching it move!
Playing in the morning sun on our weekend away
Playtime, so mom and dad could look at the view
They say my cheeks are getting round
and even rounder a few days later...
Welcoming the guests
laughing at dad
Thursday, 7 July 2011
Tuesday, 5 July 2011
Saturday, 2 July 2011
Dad had just started getting better (after 3weeks) towards the end of last week. Then mom felt something coming on, by saturday night Daughters temperature was high, sunday night even higher...doctor on monday = Tonsillitis - antibiotic required.