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)

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

Defying the odds

Ellie’s condition is 3 in a million (so where’s our winning Lotto ticket????).  On day 1 we were told she’d never grow hair on any of the areas where she was born with missing skin.  Obviously our little girl has decided to prove them wrong…she is growing hair, and lots of it!!!!!  There are still areas where the hair is not going to grow back and they will still require plastic surgery, but they are so significantly smaller than the original areas that it seems so tiny now!!

She’s still got a (very) chunky scab on the back of her head which I think will be lucky to be gone by 6 months but it is such a cool feeling to see her hair growing in patches.  At the front by her forehead she’s got a diagonal line of hair growing so it looks like some crazy mohawk lol

The dermatologists are shocked with her hair growth…hopefully she’ll continue to defy the odds…go Ellie!!!!!!

Conversation with a 6 year old…

We went out for a BBQ last night and I ended up in a very funny conversation with (a very smart) 6 year old and it got me thinking…

I’ll tell the story of the conversation first, then let you know what it got me thinking about.

Miss 6: What’s that on her head? (Obviously ‘her’ is Ellie)

Me: A scab (This answer was enough for an inquisitive 3 year old at Brenna’s kindy so I thought it would cut the mustard in this situation as well)

Miss 6: What’s it from?  Did she bang her head?

Me:  She was born with it…it’ll get better soon (surely that’s got to keep her happy????)

Miss 6: Why was she born with it??

Me: (Thinking, Oh well, she asked…) I went into a very long winded explanation of the entire story. She was thrilled to be given such a long answer.

Miss 6: Was I born with that?

Me: No

Miss 6: How do you know that???

Me: You don’t have massive bald patches on your head

This answer gave her much pleasure…we laughed for a long time and it felt good.  I never knew I’d be able to see the funny side to our situation so easily and the fact that this conversation with a 6 year old brought me such happiness it then got me thinking…….

Children’s honesty is amazing.

I love the way they ask straight up about Ellie’s head.  We are so used to seeing it that I kind of forget when I’m out somewhere new what it must look like.  However, I’m never left for long until someone quite obviously reminds me with their ‘trying to look without looking’ looks.  Sometimes I wish I had a sign up….no I have not dropped my baby or whacked her over the head with some hideous object….she just has Aplasia Cutis.  Then the fine print would then answer all their Q’s:

• Yes she was born with it
• No the doctors don’t know what caused it
• No it wasn’t picked up on during a scan
• No she wont grow hair
• Yes the scab will heal
• Yes she will eventually have hair one day once the plastic surgeons insert a saline balloon blah, blah…you get the drift

These reactions from adults have also made me think,  How would I react if I saw a baby like Ellie?  Honestly?? I’d really want to know what ‘it’ was, but I’d never ask cause that would be rude.  So, essentially I’d probably be just like all the people out there that ‘look without looking’ at Ellie.  Isn’t it funny that kids just say what’s on their mind, whereas adults try and be polite and not pry because they think it’s the done thing whereas in many situations if they just asked, it would stop a lot of wondering and speculation.

So after all of this, what would I wish people would do???

Just ask. 

4-6 weeks???? More like 4-6 months!!!

4 months

When we left the hospital, they told us it would be healed and scarred over in 4-6 weeks….obviously we’re still waiting for that to happen.  I’m sure they must have known that it wouldn’t heal that quickly.  I’m pleased that back then I didn’t know how long this would take or we would have struggled more than what we already did (that’s a whole story for another day).

We are now on 3 monthly visits with the dermatologist until she turns 1 then we’ll find out more info about when surgery will happen.  I badly want all the answers now…

• How many operations will there be?
• How large will the saline balloons get?
• How long will the balloons be under her scalp for?
• Will the balloons be painful for her while they’re being inflated?

The doctors must be wanting to test my ‘must know everything now’ syndrome…they are doing a great job of it too!!

What is Aplasia Cutis??

Here’s the info we were given on day 1…

Aplasia cutis (sometimes called ‘aplasia cutis congenita’) is a condition where a newborn child is missing skin from certain areas. In about 70% of cases it is a single lesion on the scalp, but sometimes multiple lesions may appear on other parts of the body. They vary in size from 0.5cm to 10cm.

Lesions that involve only the epidermis (upper layers of skin) are shallow and usually heal over with scarring before the child is born. A deeper lesion involving the dermis, subcutaneous tissue, or rarely, the skull may be ulcerated.

Membranous aplasia cutis is the term used when there is an underlying flat, white membrane, which overlies a defect in the skull. It can be associated with a neural cranial tube defect (encephalocoele or meningocoele), which can be demonstrated by ultrasound scan showing misplaced brain tissue outside the skull.

Ellie was given a brain scan on day 2 to rule out this last piece of info…thankfully the scan came back and gave her the all clear

How do you get it and who is at risk?

It is not yet fully known why aplasia cutis occurs but the following factors may be involved:

• Genetics
• Teratogens (drugs or chemicals causing birth deformities)
• Defect in skin development in the embryo/fetus
• Early rupture of amniotic membranes
• Aplasia cutis affecting the limbs may be associated with the death of a twin fetus (papyreous fetus)

It is a rare condition with no one particular race or sex more at risk.

The doctors can never be 100% sure about what causes each case of Aplasia Cutis.  In Ellie’s case, the main thing they think caused it was that on my placenta, there was another ‘lobe’ which they think may have been from an undeveloped twin.  This lobe was sitting right on Ellie’s head and was the same size/shape as her largest effected area.  They believe that the pressure from the lobe did not allow her skin to develop.  This does not give a reason for the ‘river’ area that runs down to her forehead

Photos

One week old

This is the first photo we took…at exactly 1 week old.  This is the largest part of her Aplasia Cutis, but from the top of the diamond is what looks like a river that runs right down to her forehead.  For some reason we didn’t take many photos of that area.

5 weeks old

About 10 weeks old

One of our many bandage protoypes...this one did not stay on very well at all!!!

Another bandage trial....this one was slightly more successful