Tag Archive | daycare

Life in the world of “Poop”

Okay, I know, not the greatest of subjects, but any CF parent will understand its meaning.

Approach with caution!

I have mentioned before that my son with cystic fibrosis isn’t pancreatic sufficient. This means his pancreas doesn’t secrete enzymes which break down the fat in his foods for him to absorb. This is why he has to take a multitude of tablets every day, before he eats anything with a fat content, to help him thrive.

Our first indication that something is going on in his body, is his dirty nappies. They stink like nothing you have ever smelled before, and have a distinct look when we have stuffed up with tablets. If he hasn’t had enough, he becomes very loose and you can see undigested food. (HA! I can already picture the looks of disgust on your faces!) If we have given too many, constipation can become an issue.

If I talk to any CF parent about dealing with poop, they all nod their heads knowingly. This is a normal subject for CF parents, well, it is for the parents I have come across!

I have to share a funny story that happened recently. My two youngest sons go to the same daycare as another CF boy (don’t worry, our kids aren’t in the same rooms as they are different ages, so cross-contamination isn’t an issue!) This other mum has recently had a baby, and we were discussing the possibility of the new baby having cystic fibrosis like her big brother.

EEEWW!! You said WHAT happens?!?!

One of the daycare workers was standing with us as we had our conversation, quietly listening, picking up some new information along the way. We talked about the little features which may mean a diagnosis, the baby’s build (she may just be petite in frame), or the wind (it could be regular colic, or it could be malabsorption related), the salty skin, etc.

Then we got to the point of talking about the contents of nappies. We started talking in great detail about the appearance. It was a completely normal conversation to us, but the daycare worker’s face slowly start to contort into a look of horror! She admitted it was interesting to learn about CF through our conversations, but this was a subject that was probably a “too much information” kind of topic. It was hilarious to see! At least we could laugh about it. Hopefully we haven’t scared her off any more conversations!

So if you get a couple of CF parents together, my suggestion is that if you don’t want to start hearing all the dirty details…back off slowly! LOL

Bella 🙂

GDD update

Sorry for being so quiet lately!! But I’m sure you can imagine it gets pretty busy around here at times.

I have mentioned before that my eldest son has Global Development Delay (GDD). He was diagnosed with this about two and a half years ago, when he was around 4 years old.

We probably always knew that there was something “wrong” with him in the early years, but we kinda stuck our head in the sand with the thought “It’s all good. He will catch up in time!” But it was when he started kindergarten that the truth hit home.

We chose a very small private school, which my niece also attends and is flourishing. He was not toilet trained, but they were willing to work with us about that, well, they were at first. After that first day of school, one half day, the teacher came out to me when I was picking him up from, took me aside and said that we needed to get him in to see a speech therapist, occupational therapist,  and pediatrician urgently. They informed me that it was in his best interest not to return back to kindy until he was a bit more “sorted” (for lack of a better term) I was in a bit of shock, but I knew she was right. I spent the rest of the afternoon in tears though.

So we pulled him out for the term, hoping to at least get him toilet trained to send him back.  However, a term turned into a semester, and a semester turned into a year.

Over the next couple of days, I sat down and wrote a list of things that didn’t quite add up. I wrote the little things like how he was obsessed with tags on soft toys (he would wrap them around his fingers while sucking his thumb. It was his comforter. Cut the tag off and he wouldn’t touch the toy again) to the major problems like his daily multiple violent meltdowns that could last for hours, significant speech delay, and the toilet training (or lack thereof)

I was surprised when I was finished that I had written three pages, back to front!

Looking over it all, a little voice in my head said “It sounds like autism!”  I did my research and found that I could tick off about 90% of the usual signs of Autism Spectrum Disorder. I felt, and still feel, that he had Asperger’s Syndrome, a form of autism on the spectrum. I havent mentioned everything that was on the list, so you may look and that and think “Nah, doubt it!”

As our town doesn’t have a resident pediatrician, we have one that flies into town every few months, and there is a long waiting list.  So in the meantime, he started speech therapy and occupational therapy. We enrolled him in a daycare with a kindy program so that he could be around children his own age more often.

Last year, he started pre-primary. With the diagnosis of GDD, he was eligible for an education assistant during class. As he was (is) a flight risk, she would hover in the playground as well.

I have no idea where we would be if it wasnt for her!! She is an absolute star. She has the “My way, or no way!” attitude, which my son really responds to. Of course they batted heads along the way, but she was a huge helping factor in getting toilet trained during the day (which finally occurred about halfway through last year), she helped to deal with his meltdowns and guided him through his school work. His teachers were absolute stars, they also had that “my way” attitude. I’m hoping to be able to get the same teachers for my daughter when she starts pre-primary next year.

He has had massive improvements this year since starting grade one. He has less meltdowns, and is slowly getting more conscious of social standards, so he is making friends easily. The kids in his class are amazing. I would have expected some bullying, but they are completely aware of his limitations, and realise he doesn’t always understand. They help to guide him towards the right outcomes.

But we recently had some fantastic news! I had a phone call from his occupational therapist who said she was 100% satisfied with his accomplishments in the last six months, and feels comfortable discharging him from OT. This is a major achievement. He still has a long way to go, but she felt that he would be able to accomplish this on his own (with help from teachers and his aid of course) I was jumping for joy after this phone call!

We have had a long battle over the last few years getting our son to this point. During his autism assessment, it was decided that while he shows autistic traits, it wasnt enough to put him on the spectrum. This was incredibly frustrating when I see/hear about other children who have the diagnosis, and show the same characteristics as my son! It wasnt helped by the fact that the assessors said had they seen him 6-12mths beforehand (as we were on the waiting list for the assessment for almost a year) he absolutely would have been diagnosed with ASD. Can you imagine hearing that? So we missed out on heaps of funding he could have had to help his learning at school. That is the most frustrating part.

For the moment, we will take this discharge as a massive positive…which it is of course!

Wish him luck fo his development in the future, and I will keep you posted of his progress!!

Bella 🙂

babies no more!

The kidlets are growing up!!!

The young one has just started daycare for the first time yesterday! It went really well!

Just before Christmas, I made the decision that when school went back, we would pull our three-year-old son out of the daycare he was in. I was not happy with everything happening there, and now, evidently, my son wasnt happy there either.

I understand that my children are a handful….believe me, I know! But I was really starting to feel that they didn’t have time for us anymore. We just didn’t seem to be getting the same level of care anymore. Dont get me wrong, I’m not saying that they were incompetent (though I probably have a few family members who will disagree with that statement), they just werent right for what my children needed.

While they couldn’t legally say “no” to taking the young one, I could tell they didn’t want him, because of the CF. When I put him on the waiting list, after a couple of weeks, the director pulled me aside and asked “Do you really think you should be sending him to daycare with all the bugs that go around?”

My answer? “Well if I can’t send him to daycare, then I can’t send him to school!” Also, with three older children already in daycare and school, he was exposed to them anyway! Yes, it probably wasnt too long ago that CF children would have had to have been home schooled. Not the case nowadays.

Anyhoo…the centre kept him on the waiting list for almost a year. I could pretty much tell they were doing it on purpose, as they kept advising us “Maybe you should look around at other centres in the meantime.” Suss much?

But after a bad week with how they dealt with our three-year-old’s eczema (first it was “hand, foot and mouth, then it was “ringworm”, but it took three medical practitioners to convince them it was eczema!) it was the pivotal moment that I cracked it and said “NO MORE!” (trust me…there was a lot more that had happened before this particular situation!)

So we found a new daycare. Our middle son started there three weeks ago, and everyone is noticing the change in him. He is happier, more talkative, and eating better. It was definitely the best decision we ever made. His room carer even came up to me the other day and said he was an absolute pleasure to have around. He just “goes with the flow” and she barely needs to do anything for him.

The new daycare have been very active in learning about cystic fibrosis. I love that they aren’t afraid to ask questions. I encourage that! I gave them all the reading material that was given to me when our son was diagnosed, so they could get a bit of an understanding of CF life. I stuck around for a little while yesterday, to make sure they were comfortable with his medications. I wasnt worried about leaving him. They are a great centre, and though he can be a bit clingy, it would be a great experience for him.

I only received two phone calls after I left. The first was to double-check about his medications for his digestive issues, as they were worried about overdosing him. I found it a little funny (not really sure why), but reassured it was all ok. But I was glad they called instead of guessing or going “oh well, he can go without!”

The second phone call was to ask if he was allowed another milk bottle. Again, I reassured that this was fine, he could have as much as he likes, so long as he has the medication to go with it.

But other than that, he had an absolute blast! He was a little unsure of the kids around him (he was the oldest in the baby room) as he hasn’t been around kids his age before, only older ones.

So as of next week, he will be going two full days a week, along with our three-year-old.

Our four-year-old daughter is doing well in her kindergarten literacy program. She is still undergoing initial testing to find out where she needs the most work. But it is a very intensive program, and hopefully one year is all she will need at this particular school.

Our eldest is LOVING year one, but due to his global development delay, we are still experiencing teething problems setting up routines at school.The new teacher, and therefore, new rules, is creating a bit of defiance. But he absolutely loves doing the school work.

So there it is…my babies are starting to grow up. Soon I will be the typical “soccer mom” (half way there…already have the people mover!!!) and asking them to stay home! Hard to believe how far we have come in such a short period of time! Bit surreal, really!