We met the plastic surgeon

Well, we had a very cool appointment at the hospital…we got to meet with the plastic surgeon!!

We went up just for Ellie’s regular dermatology appointment and he’s always said that when she’s 1, we’ll also be put under plastics.  So I asked how we made an appointment for plastics and his reply was “Well, I just go and get him for you”  (luckily dermatology and plastics share a floor).

The surgeon was really nice and answered all of our questions.  Here’s what’s happening….

At 3 years old we can get started on getting Ellie some new hair – yeeha!

She’ll have 3 individual balloons done (dermatologist said it’s like getting a boob job, lol) at seperate time (so 6 operations).  It’ll take 18 months in total so she’ll have hair before she starts school.  The news just kept on getting better because she can go to kindy just like a regular kid.  We were worried she wouldn’t be able to go incase of the tissue expanders (balloons) making the skin to fragile, but it doesn’t.

This is such an exciting time for us, we’ve finally been given all the answers we’ve been waiting a year for

The Pox

We have been a house of pox over the past month!  First, Brenna came out with them (we think we traced it back to kindy…of course!)  then 2 weeks later to the day…BAM…Ellie comes out with them.  My poor girls   Brenna was easy to deal with.  She understands not to scratch and can tell me how she’s feeling.  Ellie on the other hand was not so easy…the poor girl was miserable!  She has enough motor skills to be able to rub her face and eyes (where she had heaps) and her only ability to communicate her unhappiness was through crying/grizzling/grumping.  We had lots of cuddles that week!

I am happy to report our house is now all clear and any visits by friends with children who have not had the pox are more than welcome!  I don’t think I’ve ever spent so much time at home for so many days running!

Of course, the one week of the year that Ellie contracts a contagious bug was also the same week that we had 3 specialist appointments booked for.  Her dermatology check up was due as well as getting her hips x-rayed to (fingers crossed) be given the all clear for her clicky hips and also surgery to have grommets put it…Murphy’s Law anyone???

So grommets are now being done in 2 days, hips in 2 weeks and head in another 4 weeks.  Hopefully it wont take me that long until I post in here again.  I’ve been slack!!  I need a post-it on the fridge to remind me to keep everyone updated…woops!

Until then xo

P.S…check out the magazine stand tomorrow

It’s been so long!

Far out, I didn’t realise it’s been so long since I last wrote on here…how time flies.

Ellie is doing so well.  Her head is fully healed, all that can been seen now are bald areas (which thankfully because she is blonde aren’t too noticable) and red/purple scars (she’s like a hyper-coloured t-tshirt…changes colour with the temperature lol)

She’s got her ckeck up x-rays for her hips this month and I’m feeling positive that they’ll be fine. 

ANZAC day was a day to remember for more than one reason…Ellie started crawling!!!  All I can say is…bloody hell!!  It feels my job requirements as a mum has just tripled.  Brenna and I had to safe-proof her room on Monday.  It took us AGES.  3 year olds certainly collect a lot of junk over time.  She had a big biff-out and now all small toys are out of reach for a too keen crawler. 

Today, it was Ellie vs the Yucka Tree.  Ellie won.

We have discovered that her new skin on her head is very thin as she knocked it slightly on something (I can’t keep up with her escapades) and it’s ‘ripped’ it slightly.  She’s a tough cookie though

P.S – next derm appointment: 17th June

The news just keeps on getting better

We got the all clear from the kidney scan!!

Ahh, life is good

Check this out!!!!!!!!!!!!!!!!!!!!!!

It’s been a while…

It feels like ages since I last wrote on here.  We went to the derm appointment (paed was a no-show).  The derm was happy with her progress, he did say it’s slow but it’s looking good.  I’ve take a 6 month piccie today for the latest scab update.  Here it is…

As the paed was a no-show we had to wait for the hospital to phone us with another appointment time at the children’s outpatient clinic.  We got in within the week!  (what a miracle, lol).  The paed was fantastic.  He’s happy with her fontanelle, he agrees that it’s large but he felt all the plates on her head and the seams where they join and they felt symmetrical.  All we have to do for the next 4-6 months is take monthly growth stats on her head.  They’ve given us a form to fill out.  It is grows at a steady rate then we don’t have to go back…if it grows too fast then they want to see us again.  I’m confident that it’ll all be fine.

He wants her to have a kidney scan to check for size/placement of the kidneys.  That’s happening on Fri 26th at 9am just down the road at Rototuna.  Again, I’m feeling positive about things.

Since being on the anti-b’s, Ellie is a changed girl…back to her happy self and drinking her bottles pretty good.  She’s even got stuck into the solids!!  She’s certainly not fading away lol

Here’s a pic of her eating her dinner tonight.  Take a guess at who was feeding her…me or J

P.S…tomorrow she’s officially 6 months old!!!  What a crazy 6 months it’s been…wonder what the next 6 months will bring???  I’m hoping for…nothing!

Upcoming Appointment

This coming Thursday is our next appointment at the hospital and there’s a lot of stuff to ask the pro’s!! 

We’re meeting with our regular dermatologist who will check the progress on the scab…this seems to have come to a standstill lately.  It’s not really getting any smaller, just thicker.  J likes to refer to it as reptile skin, lol.  Our poor girl will have some interesting stories at her 21st!!!!

There’s also going to be a paed at this appointment.  Ellie’s fontanelle is quite large so we need to check that it’s just that…a large fontanelle, or if there is a bone development problem (we’ve discovered that this can happen with Aplasia Cutis).

Of course, the fun doesn’t end there… Ellie may have urinary reflux…Yes I know you’re thinking What the hell is that??? (Mum’s probably thinking I should have been more polite and written What the heck is that?? – sorry mum!)  I had no idea either until a few days ago…  in basic terms, the wee goes backwards from the bladder back up the tube into the kidney.  Here’s the website I came across: http://www.kidneykids.org.nz/?t=7

Ellie had been unwell and off her feeding so I thought it must be related to her reflux.  My GP ran poo and wee samples and the wee came back with a bug in it.  She said that this can be common in babies with reflux and that they usually grow out of it.  So I left that appoinment thinking it was no big deal…give her the anit-biotics then another wee test 48 hours after that to check that the bug has gone.  But good old me (who needs to find out all the info) decided to ask the resident paed nurse (now officially a family member) about what urinary reflux was.  She gave me info, so then I went and Googled it (Google is not my friend at times).  It sounds like if this is suspected then a scan is done to check on kidney size/placement and possible tube damage.  I’m back to the GP on Tue again for her to check Ellie so I’ll pick her brain then but it’s also another good thing that it’s timed well with seeing a paed on Thursday.  I’m thinking that surely this wont be a big deal and that this bug is just a one off, but I’d rather know what we’re dealing with than ignoring the possibilities in the hope they don’t exist.

So yip, that’s us…always something medical to be learnt in this household.  Yee haa!!! (yeah right)

(We’re still smiling though.  Ellie is a smiley-holic so she keeps us laughing)

Award for the best support in Hamilton goes to…

…the…

Waikato Family Centre!!!!! (and of course my lovely GP)

If any of you lovely, busy ladies who work there get a chance to read this: THANK YOU!!!!!!!!

For those people out there who know about the Family Centre, I’m sure you’re with me here in saying that these ladies are amazing!  They certainly know their ‘stuff’ when it comes to mums and babies.  They were the ones that diagnosed Ellie with silent reflux (yes, I know…another lovely string to add to our bow of ‘things’ to deal with regarding Ellie).  When they first told me she had it, I was also in the stage where I hadn’t been diagnosed with PND (OMG – diagnosed– makes it sound like a contagious disease, lol).  I was in denial…no way I could handle another problem.  At this stage she was also in her harness and I’d always had an excuse in my mind as to why she was so hard to settle and to get her to actually stay asleep! 

I had the following as theories:

• She was being disturbed when I was taking Brenna to/from kindy.
• She was being disturbed with her many hospital/doctor visits.
• The Harness was annoying/uncomfortable for her to wear (this is actually partially true…I mean who would want to be like a frog 24/7??????)
• This is just was babies did.

Oh, how wrong I was!!!!  Once she was diagnosed, it was then straight onto finding out how to help her to get better.  We first tried topping up with thickened formula…no luck.

We then tried gaviscon and topping her up with regular formula (my supply was low due to anxiety/lack of sleep…or PND if we’re going to be ‘formal’)…no luck.

Next onto the Big Guns…losec.  Finally a difference!  BUT only in combination with the gaviscon.  We learnt this the hard way by trying to stop the gaviscon after a few weeks and it quickly turned down hill.  So we are now on the magic formula of losec twice a day (morning and night) and gaviscon before all other feeds.

So this was going really well but the past week, I’ve been trying to ignore the very gradual down hill slide we are on…she’s going back to the old ‘ways’.  It’s a mission getting her to take the bottle, so my darling 3 year old has learnt that by shaking the nearest toy right in front of her face stops her crying and distracts her enough to drink.  She’s a clever girl (Brenna that is)  she knows how to fix any problem that interferes with any TV she may be trying to watch(“Mummy…Ellie’s too noisy!  I can’t hear my programme!!”)

So anyway, Murphy’s Law has intervened and has made my GP go away on a holiday this week.  So where am I off to tomorrow????  Yup, you guessed it…Waikato Family Centre

Scab Update: 5 months

Wow, I can’t believe it was exactly a month ago that I started this blog.  I have had so much positive response and it’s been amazing to have people from other parts of the globe getting in touch to share their experience.

Here’s Ellie’s head at 5 months.  I’ve held up a melonin dressing so you can see how much smaller it has gotten (see ‘Putting it in perspective’ for the whole story )

Putting it in perspective

Brenna likes to play in Ellie’s room and make a big mess (of course – what 3 year old wouldn’t??).  This morning she came out with some of the spare dressings we had left over from the ‘olden days’ lol.  Looking at them has made me realise how small the scab is now!  I decided to take some photos of the dressings compared to my hand to put it into perspective how large that area on the back of her head was to start with.

This photo is of the cuticerin (like a parafin gauze…this was the first layer of the dressing that didn’t cover the diamond area at the back to start with)

This next photo is the Melonin.  This was the non-stick covering that went over the Cuticerin.  This only just covered the area.  Over the top of these two layers we put on the bandage made out of surgifix (a stretchy tube stuff).

Ellie is alseep at the moment, but when she wakes I’ll take a photo of her head beside the melonin so you can see the progress.  It’s also nearly been a month since the latest scab piccie.  

I’ll do monthly scab photos to keep you updated