To my daughter on World Down Syndrome Day

I have no doubt that when you’re older you’ll think this day is all about you. Right now it seems you think the world revolves around you J But this day is about so much more than you – it’s about me, your father, your family that love you so and everyone else that your life touches.

Down Syndrome has taught me to open my eyes wider, to accept everyone as valued and purpose-filled.

We know that Down Syndrome means some challenging realities for us and you, but we also know that you are an incredible blessing to us and we are completely madly in love with you [how did you get us so wrapped around your little finger???]. I was nervous to love you when I heard of your diagnosis yet now I am fiercely and proudly in love with you.

So…it’s almost your birthday…that day is all about you – but today is celebrating all that Down Syndrome has brought to me and many others.

The Power of a Diagnosis

I've been meaning to write a post about Katelyn's thyroid test she had in March. I'm not going to get into all the technical details...will save that for another day, but after two and a half months on medication, I'm seeing the effects.

Then:
BAD appetite, NOT growing at all, weak and just not getting very strong (ok I know this is also part heart related), very constipated....

Now:
average appetite, its finally possible to manage her constipation, GROWING madly (suddenly rather round face and tummy...I'm all for it! ), SO much STRONGER.

I can't even begin to explain how much stronger she is. How much more determination she has. Its definitely not something that's always been there. She suddenly has the will to want to really try hard, to climb, crawl (however she can) and just go mad!

All it took was, reminding the doctor that we needed to do Thyroid tests...because unfortunately for us DS parents we have to prompt the doctors quite a lot in what tests need to be done and when. But it's worth it :)

For more info on Down Syndrome and the thyroid see this website's article.

Crawling

Wow, I happened to look back at a post I wrote in June last year. I will Crawl
Amazing how strong she was...but mostly shocked when I really think about how much Open Heart Surgery and her bumpy recovery has affected her.

Quite something to process.

She is getting stronger though :)

Scars and foreign objects!

I don't know why, but I've been thinking about Katelyn's scar a lot lately. I think a combination of being reminded of how physically set-back she has been because of her operation last year and also wondering how her scar is really healing. I've realised how I don't even think about the fact that she has a massive scar down the front of her chest as well as a very obvious foreign object inside there! (aka...pacemaker!). I've had to make sure that if i take off her top in front of others, that I warn them or explain why she has significant scarring.


Anyway...was interesting to look back at some pictures, be reminded of how far she's come..

Her initial scar after her first heart surgery (Banding) at 3.5 months. This scar is now a very delicate thin line that you can hardly notice.

The little body before...

Her after just being home for a few days...whole body battered and bruised with from all the drips and lines . 

This is two months later, after the scar wasn't healing well (her body half rejecting the pacemaker) - they had to put her under again to restitch her up. Pacemaker was shifted a bit and still very swollen around the area.  

This is just three weeks after the second operation - all bandaged up - trying to get the pacemaker to stay put!

Again - just a week later, the white plaster there just to help the pacemaker from shifting too much (in the end didn't help at all!)

Another week later...looking good...but still looks swollen.

Then two months later, the left and right side of her chest look very different (difficult to see), but there is a big step in her sternum so the one side looks more swollen or as though someone knocked her with a brick!

the pacemaker has found its place....perfectly obvious...can't miss it!

example one of her in action...what her body movements do and how they show off her pacemaker...

the ultimate....rib cage, pacemaker and scar all in one...but most importantly...the cutest little  girl!

Celebrating 2!

I cannot believe its been 2 years. My little girl is 2.

In some ways it almost doesn't make sense, when you see her and may expect her to be around 11 months old  based on size and abilities...but nope, she's a whole 2!

So many thoughts cross my mind when I contemplate the past two years:  how much she's had to go through, how exhausting and long its felt, how gorgeously cute she is, how when you wait so long for some things the reward feels so good, how we really are still in baby phase, how I love the fact that she's still good at cuddles  :)

Katelyn Louise has quite a lot to show for her two years. Something I can't shake though, is the feeling that she is the one single thing/person in my life that has had the biggest impact on me as a person. Not the 'having a child' part, something so much more than that. It's the questions she's made me answer, the awareness and perspective she's brought to my life, what she's brought up in me, learning over and over to be patient, loving, not jealous, accepting, easy on myself and just so much more. So, I feel like these past two years have begun a journey in me that will continue forever, but one that is so rewarding...because honestly...with a cute kid like this...my heart continually smiles :)

Don't really have proper pics of her relaxed bday celebrations...but here are one or two for now.

From this....

really no clue what is happening with everyone staring at me :)

finally a smile :)

** The best part of the day was that her 3 month old cousin, Sarah-Hope was there. I'm still preparing to write about her and how these two are going to be fab friends...but I may wait until her mommy has done version one of her birth story...hint hint :) **

Those Moments

Sometimes I have these moments, where I find myself feeling so sad for my special girl for all she has to go through.

When after a stretch of issues(of any kind) over days or weeks (in a good phase) and she just cries and cries in bed at night, I just can't not pick her up,hold her tight to tell her I'll always be here for her and that its so yuck that things are so tough for her. 

Its not a depressing emotion, just a deep one. I'm full of faith for the life she has ahead of her, but I cant pretend those moments dont exist.

Milestone Mania

My child...she's just manic these days!!!! Got to be the result of 7 healthy weeks. She's stronger, louder, more determined, smiley, cheeky, totally naughty and everything else in-between.

How am I meant to discipline her when...

* She stands up in her high-chair when I'm trying to feed her...I mean, she's figured she can put pressure on her feet and stand...I'm ecstatic! 

* She tries to launch herself onto me to pull my hair (and hard!)....I mean, she's got enough strength to do whatever she has to do to get herself onto me...I'm smiling!

* She puts on tears to not eat...I mean, she's realised that there are multiple emotions in this world...I'm thrilled

* She pulls everything off the table when she's standing next to it...I mean, she's figured that if she gets her hands on the table I may help her up...I'm overjoyed!

She seems to be getting closer to crawling by the day. She all of the sudden got from lying down to sitting up (with a teeny bit of nudging) all on her own yesterday ( I thought she was miles off)...and by the end of the day she was literally leopard crawling. She is figuring it all out very quickly. Even if she isn't quite strong enough for crawling yet, the patterns are slowly coming together.

When I finally get my pictures off my phone, I'll be able to post some gorgeously cute photo's of my strong little thug. 

I think the next stretch is going to be Milestone Mania!!!! I can't wait! 

Where did the time go?

Feels like its been a lifetime since my last post.Yikes...its November!

Katelyn has had a tough time since being home, with throat, nose, tummy, wound issues...all one after another. She ended up back in surgery after 4 weeks at home, as her wound wasn't healing around her pacemaker. So they cut her open again (not the whole way up, but almost), moved her pacemaker and stitched her up nice and tightly. Out of theatre and back onto a ventilator, which really was just hard to see...after all that she's been through...going in for a 'surface' surgery...and back to that state.[I of course know it was the best thing]. Anyway, she struggled a bit in hospital, and came out after 6 days on more medication than after her open heart surgery! After that again, has been one thing after another, ears, coughs, noses etc...with the one odd happy day inbetween, but her poor little body I think has had enough of getting attacked by things! I keep trusting that we're on the road to 'good health' soon...or at least to get to 7 days straight of a happy healthy little girl! Desperate for her body to get a chance to get strong again, start preparing for crawling (military mom almost in action) and learning more and more.

I've started working. In amongst the medical chaos I'm trying to get a good few hours work in a day...proving to be interesting jumping from work meetings to doctor's appointments, sending Katelyn with others to doctor appointments, daddy covering for me while I'm at work. So all interesting. It feels like madness, but this madness feels right (how is that possible!). 

But in between all of it, Simon and I had a great night away, we celebrated Simon's 36th birthday (getting seriously old!), had some good times with friends and family. Katelyn still manages to charm her way through life, making lots of doctors, granny's, passers by, nurses all smile...which always warms my heart. When I think of the past 7 weeks, I can't quite believe what she has gone through (and I wonder why she bursts into tears when she sees a syringe!) but still, even when she's feeling pretty rotten, she smiles and gives me a nice warm cuddle and I just want to squeeze her tighter.

Think we're in love with her more than ever before, so proud of her and looking forward to what lies ahead for her in the summer months to come.

Hospital days

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

Day 1 - 4 post op

Wednesday - Saturday (Day 1 - Day 4)

Katelyn has been doing relatively well. Her progress has been slow, but there have been no major setbacks which is always something to be grateful for. She had started becoming more awake and aware after 2 days of being heavily sedated and drugged up. She wasn't the happiest in the world, and having her hands tied down (to stop her from pulling out the ventilator, 4 drains and tube in her nose, lines etc!) really was frustrating for her and very frustrating to watch. They were hoping to get her off the ventilator on friday, but for some reason they didnt feel she was ready for it so waited until saturday. She struggled with breathing after it came off, and luckily our incredible nurse worked hard on her to keep her breathing clear and to help her out as much as possible. The nurse also kept her hands bandaged up, but allowed them to move around, so she could at least move her arms but not really pull anything out.

When life stands-still

I don’t really want to recall the experience in detail, or maybe I’m not ready to yet, but the details are not important. For a moment on Saturday night just before we left, Katelyn’s heart stopped. We were there. We were asked to leave as they started chest compressions on her little body, right over her surgery cut. A minute later (not that I had any idea of timing, but it felt like a lifetime) she was fine, besides incredibly sore from the ‘clinical’ effects, and of course from numerous hard compressions on an incredibly tender area. I don’t think one can ever explain what its like to witness and believe for a moment that it’s all over - besides feeling like my entire life was over. In that moment, all we could do was pray, though we had no words to say.

The details around it were unfortunate, it was really a ‘technical glitch’ and the doctors and nurses know and admitted it. Most importantly Katelyn is fine and they assure us that there are no implications for her.

It really shook me. It reminded me of how incredibly fragile life is, how we can become so casual and take so much for-granted. It reminded me that God was in control and the only one that we can turn to in times of distress. I cannot imagine how empty I would feel if I didn’t have that to hold onto.

I love her more than ever.

** Wed 31 August - She’s had her pacemaker surgery and is back on a ventilator – hopefully will get removed today. Praying for rapid recovery after this last hurdle is overcome!**

Why they said 'Yes'

We had our cardiologist appointment two weeks ago - the one we've been waiting for for 6 months! We were feeling pretty anxious about the appointment, mostly because of what we may find about the 'complication' that the cardiologist had been concerned about. 

Anyway, he didnt do a detailed scan (phew...saved us some cash!) - he only checked up on the complication and checked her out. He was thrilled that she's looking so healthy and had 'doubled-in-size' since January. He didnt give us too much other feedback, which we expected and promised to get back to us the following week once he'd chatted to the Surgeon. 

After a painful 5 days of waiting...he phoned. Surgeon's feedback " There's no point in delaying it any longer". YAY! So we had a date scheduled, 25 August 2011. Catheterisation scheduled for the 23 August, and then admitted on the afternoon of the 24th to prepare for the morning. Its a relief to have it scheduled, I feel ready for it, trusting God for it all.

Ultimately, this is why they said 'Yes, now...'

the nice bulging arms...

 that pot belly...

 round all over

 loving my fattening milkshake...

so much stronger!

**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**

One Year Ago

Dear Katelyn,

One year ago, I left you in the doctors arms and had to walk away from a hysterical you. The next time I saw you, machines were keeping you alive. A year later, we're one heart operation down and hopefully just one more to go.

On that hospital bed, 3 months old, 4.2kg's...today, you're busting through at 8.1kg's-you go girl! You've muscled up-sitting so beautifully, getting so good at sign language, you love people and your smile and excitement is contagious and you're just an incredible delight to your Daddy and I and many others.

So, as I think back to this significant time a year ago, its hard to forget sitting in ICU and the ward with you and to not to dread the operation that lies ahead but I can't ignore where we are now, praise God for it and we commend you. You're an incredible fighter, things don't come easily to you, you have been through so much and very rarely complain - you just carry on surprising me...everyday.

I know that God has His perfect timing for your next operation, so until then...enjoy those vanilla milkshakes that help you get fat [ cos promoting getting fat won't last forever - and it's costing me a fortune :) ], and here's to getting closer to crawling, signing and so much more!

I love you, 
Mom

Signing...I know she can

Some days I feel like the past 5.5 months of signing has just not been worth it. When everyday you are trying your best to sign the few words that we have signs for, daily, for months...and STILL no response...it’s so easy to become despondent.

I believe in it very strongly, and I so look forward to the day when I can communicate with my child before she can communicate verbally. At least she **will be able** to tell me when she’s hungry, thirsty, tired etc. That’s what I hold on to.

She isn’t signing yet. BUT I have faith it will come soon. Firstly, because she’s clapping and waving and is starting to comprehend her hands and what she can do with them, and how she can copy people. It’s a good start. But secondly, on two very very random occasions in the past few weeks, we’ve seen her pat her tummy a while after one of us have been saying ‘mommy’ (and the mommy sign is a pat on your chest) – I’ll take the tummy as chest any day J  I know she’s beginning to absorb so much more. Whether its related or not, the fact that I’ve seen her pat her tummy makes me know she’s at least getting another action in!

For those of you who’ve been there, I think you’ll understand the incredible reward it is when your child starts to sign. I’m only beginning to feel the reward…and although I don’t feel it fully yet at all…just the hope and faith fills my heart! I can’t wait for her to sign mommy – even if its daddy ;) and even if that’s the only one she signs for months!

Heading into the potential space of a looming operation, I want to step out in faith and pray that she’s able to sign the basics before operation time (still no news on that – besides a checkup in August). It will be wonderful if she can at least sign thirsty / tired / hungry while in hospital. Though I hope that it doesn’t all disappear from her memory when her hands are tied down – but I’m trusting God that as soon as her hands are tested and given some freedom that they behave and don’t pull out the million pipes, and that she’ll be able to communicate. Always good to have high expectations I’ve been told :)

 

But that aside…I ask God for the discipline of consistency, consistency, consistency…as that’s what this is all about.

Teaching Children with Intellectual Disabilities

Today I attended a seminar run by one of the worlds leading researchers in the education and development of children with Down Syndrome. The main topics were speech & language, the learning environment, reading and managing behaviour.

It was excellent for me and I'll have to keep referring to my notes when we do hit the various stages with Katelyn - but a few things that stood out for me (and good for me to run through it all and not forget it immediately!).


* Practice changes everything  
* If you're not able to communicate, it really effects your social competence
* There are wonderful strengths of Down Syndrome children, use them in learning
* Being able to move is essential for learning and being involved socially
* Support with success and not with failure
* The brain develops through input and learning continues forever
*Your regular toddler, learns through asking asking asking, but your child with Down Syndrome, who isn't prompting you (for various reasons, inability to communicate etc) isn't being spoken to nearly as much.So I have to giggle and ask God to give me the ability to talk talk talk (which really doesn't come naturally to me!), and repeat repeat repeat.
* Behaviour is THE most important thing. If you can behave, you can always fit in.


There are many families who face the challenges of inclusive education (and some before we will), but I can't but not look ahead and see the difficult questions / choices / decisions / conversations we'll have when figuring the best way to go. South Africa is just NOT an inclusive culture. Am not going to even think further for now, as its an enormous topic, but I trust God that the right options will come available for us at the right time and that we'll feel equipped to make the right decisions for Katelyn.

** I get home from the seminar, to a hilariously cute gorgeous little girl - who has been quite an angel for her father (lucky him!) and a bunch of smiles for her grandparents. Looking at her I sometimes wonder how / when / what / ?????? I'm going to fit in ALL the things that will be so excellent for her(from therapies, to activities at home, signing, making personal books etc etc etc) ...or maybe I'll just rather forget about it all and just cuddle her! **

Personal Milestone

This past weekend, we had a Kiddies Fashion Show - fundraising event for the Special Needs School where Katelyn goes to for early intervention. I had been dreading it - in my mind, all I could think about was how I was going to handle seeing a whole bunch of special needs kids (diverse abilities, syndromes etc) - staring at my future, struggling to come to terms with the way they look, walk, speak and behave. Luckily, in the madness of having a half sick child (day 3 of urinary tract infection) - I didnt get to think about it much that morning as we were in the rush of attempting feeds, medications etc etc.

I can't pinpoint what it was, whether I've come a long way, or what - but it was an absolute joy of a morning!!!! The kids were really adorable, some clearly more extravert than others - but all just a pile of cuteness bundled into bodies that challenge them in various ways. I am so grateful God gave us a good experience - I don't think in that moment, that I would have handled another emotional challenge. It also gave the grandparents a chance to embrace our futures - to see what the next few years have in store for us - and that its not all depressing and hard - but filled with the most incredible expressions of joy, most enthusiastic smiles and energy and I guess most of all...a beautiful little growing girl.  I feel its quite a big (actually no - HUGE) personal milestone for me, to be in a special needs environment like that and to not have been thinking all these million and one thoughts every moment - but to look at my daughter (who is obviously by far the most adorable of them all) and not be scared for the future.

Two quick pics of her on the day....

Things change and life goes on

So we had the heart news - thats a whole separate post in itself - I'll get onto that when I have a moment. Bottom line...we're waiting for at least another 6 months.

So, life goes on. And I suspect the days will roll into weeks and months - in a good way. I've accepted the delay, and know that Gods timing is perfect. But for now, its how we move on, how we choose to spend our time, our energies and everything else.

For now, I'm taking it a day at a time. We had a wonderful weekend, just hanging around with Katelyn just enjoying where we at with her, talking about her next milestones and (me) thinking about what I really need to work on with her, how we're going to get there etc.
She's almost 11 months - and we NEED to get to:
- Sitting
- Exploring objects, putting them in her mouth etc (this only happens by default now)
- Eating technique - needs to be worked on!
I'm happy to just stick to and focus on these now. I feel like she's so close, yet so far sometimes.
The exploring objects and eating thing is probably the one that makes me a little more concerned, I'm going to possibly have to touch base with some people and find out any tips / help that they've had or things they've done that really worked. She's suddenly become very anti anything in her mouth, so I've never really been worried, but all of a sudden, I've noticed she doesnt want anything put into her mouth unless she's eating. So - thats my big project for now I think (together with the eating). Its so important for communication and speech that I really need to learn more about it. The sitting, well, even if delayed and below average - it'll come.

So here's to a week of trusting God for interesting avenues/people/research for me to find out more!

This creature is toooooooo cute!

tI wanted to get some pics of Katelyn on the move and she just looked so cute and chuffed with herself rolling and rolling around!

therapies therapies everywhere...

Can be so overwhelming going off to all these physio's, checkups, appointments...some near, some far. I know each one is so worth it, but its soon time to consolidate. For me to consolidate what we're focussing on and what we're learning...and what Katelyn's trying to do and focus on that. Because everything has been so chaotic and all over the place, now its time...2011...time to consolidate.
So I do need to learn from other moms how to do this, the best way, to have a list of things we focus on, but I do also need to figure out whats going to work for us.
Just some of the things that need work:
 - Sitting, carrying weight on her arms, and giving her some feeling of crawling!
 - Talking....carry on the talking talking talking and all other social skills
 - Need to do more peek-a-boo and start some turn-taking - eventhough i think she's a bit off this we'v been encouraged by so many people to do it so we should get onto it!
 - lots of Stretching, holding, banging...learning there's a noise to some things and figuring out that the world kinda works and has responses
- SIGNING...lots of signing with our few initial signs we've started
....and a few other things...simple things...things that don't require much, but without proper structure its so easy to just focus on the gross motor skills and forget to talk to her or anything...so I need to do it for myself :)
I'm posting this so i look back on it to check up on myself...aim, by end of January to at least have a list up in the playroom!!!!

THE week...9 December

I'm not sure whether it is,or whether its not. But thursday will officially be a year since our lives changed,or should I say,what we thought for our lives,took a major change. So I'm trying to work out whether its a big day, or whether I'm being too *i don't have the word for it*.

But it really has been a hard year,in so many ways,now I'm just kinda numb and so used to the challenges that it almost feels normal (which obviously is the idea and probably a good thing). When I see other people go through the phases we've gone through,or just ahead,I realise how different this journey has been for us.

I'll never have that first child, holding her, breastfeeding her, special bonding time in hospital - and I do wonder if next time round, how hard its going to be with old memories,but trusting God on that one that I'll be free of that and able to be there fully. But I can't think of all those things that I won't have or didn't have, because there are lots, but I also had my own set of experiences and I guess that's what I need to remember. But that's whole separate thought on its own.

Simon is literally so ready for holiday I've never seen him like this. Its killing him that we're not yet ready to go. When we chatted about it, I was asking him howcome he is so desperate for holiday. He just said he really needs to get out of Cape Town, then I realise how its all just been too much and we probably just want to escape it all.

So here's to a final week of closing up this year, so we can come back and think of the year to come and not dwell on the past. It'll have its own set of challenges,but I'm so ready to attempt to move on.








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Seven...almost eight months

Almost eight months...can't believe it. She's such a sweetie...hard work, but such a sweetie. Having a guilty week of how little I do with her...how I should be doing so much with her, as it can only help her, but find it so hard to find the time, or when I do have abit of time, to actually take it by sitting down with her and playing with her  - and not dumping her next to me on the floor while I get on with something or try connect with some people.

Katelyn...I'm trying to use her name more, as she needs to learn to respond to it. It is going to take a while to get to that, so we're trying to be consistent in only calling her by her name and no other baby nicknames (for any parent, i bet you can agree on how hard that must be!!).

We had a good physio session this week, she's very happy again with her strength. We're working on a bunch of things..but one thing i found interesting is the learning and starting to put pressure on her arms / hands. So did all sorts of interesting things in how to do that and integrate that into playtime (note to self: more things to do with her when I actually commit to some time with her!).

Busy time of year ahead of us, trying to keep our diaries relatively 'free'...which means just not trying to squeeze in too many things in one day...its hard! Anyway...now the downhill road till christmas break...Simons ready to go away now...but just a few more weeks of hard work...then a good break :)