24/06/13 - hitting the milestones eventually

Children with a cleft lip and palate are statistically more likely to encounter developmental delays. It's not something I was aware of until recently, I mean, how can the formation of your mouth affect your ability to crawl or walk? It doesn't make much sense, but the proof is out there.

What brought my attention to it was when I realised Ellie wasn't doing the same things Sophie had been doing at the same age. At three months she wasn't rolling or playing with her legs, nd she was only just beginning to discover her hands. 

I didn't want to compare the two girls, especially when I knew that Sophie hit a lot of her milestones early, but I think it's something every mother finds herself doing at some point. I kept a close eye on her and tried to encourage her to engage in play. I knew all I could do at this stage was wait and see.

I don't know if my perseverance paid off or what happened, but at five and a half months old she suddenly woke up one morning with the ability to do all of the things she was meant to do before six months. It was that sudden. She went to bed as a boring newborn, and woke up as a playful, inquisitive baby.

I don't know if she is delayed, she did get them in in the time frame after all. I also don't know if she'll hit the next lot in time or if things will get progressively slower. But what I do know us that I will do everything I can to help her along the way.

14/06/13 - So much for our month with no appointments

I was so excited at the start of the month when I noticed that we didn't have a single appointment until July. We've been shuttling between one specialist or another since partway through my pregnancy, I feel like I live in a hospital! But it seems Ellie has other ideas.

Yesterday I noticed a tiny bite on her pinky finger. Just a little white dot really, with some redness. She wasn't worried or in pain so I didn't think about it. Just got on with our day. This afternoon though I noticed a huge blister had formed where the white dot was. There was also a thick red line running up the length of the finger.

Needless to say, I freaked out. I quickly called our doctor's surgery, and we were sitting in the waiting room within 25 minutes. Not a bad effort considering the surgery is 20 minutes away and we were all still in our pj's!

The only appointment I could get was with a different doctor than we usually see, but I had to take what was available. She barely looked at Ellie's finger, and simply said that it needed a honey dressing and it would heel on its own. She couldn't say if it was a bite, or what could have done it. 

One of the practice nurses dressed the blister for us and told us that we needed to keep it clean and dry. And because that's Ellie's chewing hand, that means back to the arm splint. She's not impressed. Not impressed at all!

13/06/13 - The last stitch!

That pesky stitch has finally fallen out! I noticed this morning that it was gone. Hopefully the swelling can now go down. At the least, there'll be no more pumpkin hanging off her lip! 

4/06/13 - Give Me 5 For Kids

This month is Give Me 5 For Kids month. This great initiative raises money for equipment and supplies in children's hospitals around the country. The great thing about it is, money raised in your area stays in your area, so donations made in Tasmania all go to the paediatric ward at the Royal Hobart Hospital.

Over the next 16 years Ellie is going to have many, many visits to the ward for her different surgeries. And while its pretty good as far as hospitals go, it definitely needs help to be great. So please, head over to the website and donate $5. Because really, what's $5 to one person? A cup of coffee? A muffin? But all of those donations will add up to a huge difference for kids like Ellie who depend on their paediatric wards.

www.giveme5forkids.com.au

09/06/13 - Solid Success

We took an extended break from solids for awhile, after it was pretty clear that pushing her was doing more harm than good. While we were waiting for the right time to start again I did more research, but there really wasn't anything I didn't know. It seemed we'd just have to give her some time.

A few weeks later I tried again, with something a bit sweeter. I was determined to do it all right this time: homemade food, start with veggies, limit sweet foods, etc etc. I don't know why. I did whatever I wanted with Sophie and she's anything but fussy when it comes to food. I guess a part of me was still doing the mummy guilt thing - I'm responsible for not growing her properly, so I need to make up for that every way I can. It sounds so stupid when I put it in words like that. What's with mummy guilt anyway?

So this week when we started again I changed the rules a bit. Rather than waiting until after a bottle to try solids, I offered it to her before her bottle, so I knew she was hungry. And rather than vegetables I used a sweeter organic cereal mix, something Sophie loved at that age.

It was a mild success. She at least didn't scream as soon as she saw the spoon. Each day got a little bit better, and now she grins and laughs when I put her in her high chair, and she eats enough to not need that bottle. Which was the goal all along. She's even having vegetables again. 

Perseverance. Seems like that's the magic word when it comes to cleft kids. 

07/06/13 - Lingering Germs

A week on, and Ellie is still coughing and spluttering. She's finished her antibiotics, now it's just wait and see time again. It's horrible watching her cough so hard, but its also something I'm used to after going through it for so long with Sophie.

It worries me that she will have the same issues with her immune system. Not just because it would be horrible to have two kids sick for more than half the year, but because of what it could mean for her long term. If she has a lowered immune system will her surgery recovery take longer and be more risky? Will she be more susceptible to post op infections, fistulas, complications? Will her development be delayed if she spends too much time too sick to play?

The thing is, it's too early to tell. This could just be a nasty cold. But with what we've been through with Sophie in mind, it's still something to consider. Meanwhile, I'll just keep hoping mummy love is the magic cure for everything.

03/06/13 - Health Insurance

Lucky for us, here in Australia we dont need to have health insurance to get high quality medical care. but it does help for things outside of the hospital, like optical, dental and phsio. we dont have hospital cover, but we have extras cover for those sorts of things. 

so i was going through some of the different health insurance policies available to see if we could get a better deal than what we currently pay. And I discovered something very interesting: Opthomology was not only included in our current cover, but the level of the rebate was fantastic. I was over the moon.... For about two seconds, when I remembered I hadn't added Ellie to our policy yet. Now I need to call the insurance company and see if there's anyway to still claim for her visit last week.

I'm still looking at different policies though. I want to make sure that we have the est cover we can for things like speech therapy, physio and occupational therapy for later down the track. Of course we have access to all of these through free clinics, but the waiting times can be pretty horrendous, and I don't want Ellie to pay the price of having to wait any longer than she has to.