Hospital Appointments

Enjoying his tram ride

It seems that the past couple of weeks has been a blur of appointments for Felix and, unfortunately, it looks like he will have to have three general anaesthetics over the coming months. One for his ears, one for a hernia and one for an MRI to check on the development of his hydrocephalus (fluid on the brain).

I took Felix to see the Ear, Nose and Throat specialist to see if he needed to have a new grommet put in his right ear. I had to grit my teeth, the entire appointment, because the Doctor was very patronising, and not exactly positive towards Felix, or the fact that he has Down Syndrome. Felix walked into the room, full of smiles and waving at the Doctor, but he wasn't acknowledged at all. Felix was referred to as one of "these types of kids", and the Doctor even said, "Their ears are not normal, and so we just try to make 'them' as comfortable as possible". He made it sound like Felix had a terminal illness. He wasn't even going to worry about putting another grommet in. He said, "He'll be fine if he keeps getting infections. He'll just have a fever and his ear will ooze a bit. Just keep giving him antibiotics".  Ummm..... I don't think so! An ear infection every single month is a bit much for a little one to cope with, not to mention the effect of constant antibiotics on his immune system. I insisted that he get booked in for a second surgery and he reluctantly agreed. I got the impression he thought it was a waste of time. I'm so thankful that the actual Surgeon and staff at the hospital treat Felix so well. At least I know he will be looked after for his surgery!

So adorable!

It still boggles my mind that (some) people's views towards people with Down Syndrome can still be so negative and archaic, especially in the Medical profession. Appointments, like the one with the ENT Specialist, really drum home to me how much we have to be advocates for our children. We have to speak on their behalf to get the treatment they need, and deserve. It's not always easy and, I have to admit, I was close to tears, with frustration, as I had to challenge what the Doctor was saying. I hope that, over time, my resolve will strengthen and I won't hesitate to be Felix's voice.

After Felix's ENT appointment, I had to take him for an Ultrasound to see if he has a hernia. Isaiah (14) and Aaron (12), both had to have surgery for inguinal hernias when they were tiny so, when I saw a bulge in Felix's groin as I changed his nappy, I was pretty certain that's what he had too. He was such a brave boy, as he lay on the bed, having the Sonographer poke and prod at his testicles, and groin, with the Ultrasound machine. He lay perfectly still even though his face said that he was really uncomfortable. I haven't had a follow up appointment with the GP to discuss the results yet, but the Sonographer said that he definitely has a gap in the inguinal wall which doesn't close, and she was able to push his testicles right up and through that gap. She told me what it was called.... a name I can't pronounce, but she explained that it was a similar thing to an inguinal hernia. We should find out soon if he'll need surgery to repair it. 

City walk

The Ultrasound was a very different experience to the ENT appointment. The Sonographer treated Felix beautifully. She kept telling him how good he was being and how he was doing such a good job of laying still.  When the scan was finished, she stuck two stickers onto his shirt, saying how brave he was, and even gave him a bunch of spare ones as well. He signed, 'thank you' and I could tell he thought he was pretty special with his shiny stickers. It really doesn't take much effort to be kind to little ones, and the reward when you see a gorgeous smile, has to be worth it!

Fireman Felix

Felix enjoyed some new experiences, in the city, when we went there for his appointments. He had his first ride on a tram, which he thought was amazing. It was night time, and we were heading into the city with Bekah (20), Joel (18), Mel and little Noah, to get some dinner. He sat near the window, mesmerised by the sights out of the window. There were cars and trucks and buses, and so many lights. I couldn't look away from his face as he took it all in. It was adorable! Later, he sat in a high chair, and devoured the Chinese food we had ordered, trying lots of new things. He particularly liked the smoked duck and the steamed buns, but he even ate some green beans with XO sauce and really enjoyed them. After dinner was finished, he went for a walk with Bekah, stopping to smile and high-five people along the way. He was getting very tired, as it was way past his usual bedtime, but he still managed to share a little bit of gelati with us before we took him home to bed. As soon as he saw the cot, he tucked his monkey and 'ugly' sock cat under his arms, and threw himself into bed. He had just had a very long day!

World Down Syndrome Day 2013

Felix had the BEST day!

I've finally got back to my computer after a long drive home today.

I hope you had a fantastic World Down Syndrome Day celebrating the lives of the beautiful loved ones in your life, who have Down Syndrome. 

I've had a busy couple of months planning a fundraiser for the Early Intervention class at Down Syndrome South Australia, and am pleased to say, it was a huge success. I chose to hold it on World Down Syndrome Day, so we could all get together and enjoy our children, and each other, while we celebrated the day. It was wonderful to see so many families, friends and precious little faces (many, covered in cake by the end...especially Felix's buddy, Liam!) I was a bit worried that nobody would come, so I was really pleased to see so many people there.

What I enjoyed most, was the diversity of the group. Some of us knew each other; old friends and new. There were some family members, but probably most exciting of all was a handful of older people, who saw the fundraiser advertised in their church newsletter, and came along, even though they didn't know any of us. I had some wonderful conversations with them as they asked questions and commented about how 'marvelous' our little ones were. The children certainly changed a lot of pre-conceived ideas yesterday!

You're enjoying that, Liam!!

One of 'our' parents, Mum to a beautiful little girl with Down Syndrome, spoke to the group about her and her daughter's experiences in the Early Intervention class from only a few weeks old, right up until her fourth birthday. She was so easy to listen to and gave such an informative talk about what happens at EI. I'm sure it was just as interesting to those hearing about it for the first time, as it was to me. She also showed a DVD with photos, of her daughter, over her time at EI. It was gorgeous, and brought tears to my eyes.  I'd like to publicly thank her for doing such a brilliant job and for being willing to share her story with a room full of people.

Some of our afternoon tea

Something I noticed yesterday was that even though there were quite a few kids rushing around (one super cute little man was riding his bike), there was only happy noise and no crying. There was dancing and smiling, and excited squeals and laughter. It was so precious to see the kids interacting with each other, and the adults, and having a wonderful time.  I was really excited when one little girl, who I haven't seen for months, came rushing straight up to me with a huge smile of recognition...so sweet! It was great to see how much the kids have all grown and developed since I saw them last, and it was fantastic to meet some new parents with their children too. There was a man, in the church office, who said to me as we left, that it was a joy to listen to the sweet sounds coming from the hall where the kids were playing.

Felix with his Granny and Papa

Thank you to everyone who participated in the day, and helped me in the planning and organisation side of things. It always takes lots of hands to make something like that happen. Thank you so much! To everyone who gave a donation, I am so grateful. We managed to raise over $1000 for the Early Intervention class, which will be put to good use enhancing the learning of so many special little people. 

We have had a lot going on in our lives recently, so I have decided to have a little break and set my blog aside for a couple of weeks while I regroup. I thank you so much for reading my ramblings. I am constantly encouraged by messages of support and love. They are greatly appreciated. If you would like to message me privately, please email me at kpaskett86@gmail.com      I'm sure I will have many more Felix antics for you when I come back. Much love x x x

Two More Days!

Enjoying some quinoa

It's been a frustrating couple of days for me. I have been looking forward to the World Down Syndrome Day fundraiser, I've been planning for this Thursday, for such a long time. Things were moving along nicely, and I only had some last minute organising to do, when I came down with an awful cold two days ago. I have felt absolutely lousy. Why is it that I can go nearly twelve months, without being sick, but just when I need my energy the most.... Bam! I didn't think I was going to be able to finish getting things done, but I've managed to drag myself around and finish what I needed to. I'm feeling significantly better today so, hopefully by Thursday, I'll be back to normal (whatever that may be...hahaha!)

Poor Felix. I have been trying to keep my distance from him a bit, which is hard when I'm home with him all day and want to snuggle him all the time. I've been so worried that he'll get sick before Thursday and I don't want him to miss out on celebrating with us all. I'm really looking forward to introducing him to the people who haven't met him yet, and for him to spend some time with his little friends. He has already missed out on Playgroup this week, so I think he'll be looking forward to running around and socialising a bit.

Still eating...watching Aaron blow out the candles

Felix has been a bundle of energy the past couple of days. It's always the way with kids; the more worn out we are, as parents, the more energy they seem to have. I have been trying to pack boxes, to take to the fundraiser, and Felix has been unpacking them. I got all of his clothes and toys packed, for his sleepover with his Granny and Papa, and he promptly pulled everything out and scattered it all over the floor. I'm taking some blocks to the fundraiser, for the children to play with. I've lost count of the times I've had to pick them up today and put them back in the container, because Felix tipped them out. He's been a little monkey, but I think he's been so bored, stuck at home with a sniffling, sneezing Mum, that he had to entertain himself somehow.

Bet you can't squat and eat like this!

I'm pretty sure Felix is still feeling well because his appetite is as huge today, as it has been over this past week. He had only just finished his breakfast this morning, when he started asking for more food. He's been a bit spoilt over the past week. I've been doing a lot of baking for the fundraiser, so he's been licking the beaters and tasting the cakes. He's probably had more sugar, in one week, than he has had his whole life! Thankfully, his favourite snacks, at the moment, are a little more healthy; sultanas and grapes. He opens the cupboard and gets out a little plastic bowl, and holds it out to us to fill up with them. He knows exactly what he wants, and he shakes his head frantically if we suggest something he doesn't like. He has become very independent at dinner time, and likes to feed himself without help. He's still learning to master his fork and spoon, and will still often resort to picking up his food with his fingers. It's much quicker to eat that way...and a boy has to eat!

Felix and I have an early start in the morning, and a long four hour drive to the city. I won't be posting a blog tomorrow, but look forward to filling you in on the fundraiser when we get home on Thursday night! Have a great World Down Syndrome Day, whatever you are doing, and wherever you are celebrating. If you haven't thought about World Down Syndrome Day, but would like to do something, contact your local Down Syndrome Society and see what events they have on. Go along and enjoy the fun!

Happy St. Patrick's Day

Happy 13th!

Happy St.Patricks Day! Thirteen years ago today, I gave birth to a gorgeous little boy, Aaron. My labour only lasted 25 minutes, and he took a while to start breathing properly from the shock. Thankfully, after a bit of oxygen, he pinked up nicely and got to meet his 6 older siblings who had all witnessed his birth. He was delivered by an Irish Midwife, which was very appropriate for the day. He has grown up to be such a great kid, with the most mellow personality and fantastic sense of humour. Happy birthday, Aaron. We love you so much x x x

Busy boy

Felix must have got tired of hearing he'd only put on 200grams in the past six months. It seems, he's determined to rectify that by eating constantly! I am shocked at the amount of food that tiny little body has managed to consume over the past few days. It seems all we hear is "eat" (spoken and signed).

I took Felix to a little friend's birthday party yesterday. While all the other kids were running and playing, Felix sat and ate. I had put a selection of food on to his plate and he ate all of it, and then asked for more. I refilled his plate a second time and he ate all of that as well. The lady, sitting next to us, couldn't believe how much he was eating. She said, judging by the size of him, she wasn't sure where all the food went. Maybe, finally, Felix is having a growth spurt!

Prior to the food being served, Felix enjoyed a big play in the sand pit. There were a lot of kids rushing past him and making quite a bit of noise, but he seemed unbothered by them, which was great. Once he discovered the slide, I endured my exercise for the day, lifting him up to the top and sliding him down, over and over. He doesn't quite have the neck strength to be able to go down a big slide by himself yet. His hypotonia makes him very floppy, and his neck falls back quite easily (banging his head into the slide). As long as I can keep him upright, he has the time of his life on the slide, laughing his head off and then signing 'again' as soon as he gets to the bottom.

I'm watching you Cookie Monster

While Felix was still eating, Cookie Monster and Elmo arrived at the party. From a safe distance, Felix thought they were fantastic. He started pointing at them as soon as he saw them, and making lots of excited sounds. I let him sit, at a distance, for a while until he was used to them being there, and then decided to take him over to see them. He surprised me by being quite OK with being close to them; he even gave each of them a 'high 5', which was great. I handed my camera to someone so I could hold Felix, and get some photos of he and I with them both. That's when it happened...... Elmo touched Felix! It was the whole Santa thing all over again. His whole body tensed up and he started making a really weird noise; not a cry, not a scream, but an 'I'm so scared, I don't know what to do' noise. I'm not sure who I felt more sorry for, Felix or Elmo. The more Elmo tried to make friends, the more Felix freaked out! I'm pleased to say, it didn't last long. We managed to get a couple of photos. My favourite is of Felix looking very suspiciously at Cookie Monster!

Eating and watching Elmo

Today, Felix literally ate from the minute he got up, until he went to bed (except for when he had a sleep). He always eats a big breakfast, then after his mid-morning snack, he goes back to bed. Today, we had visitors so Felix didn't get into bed at his usual time. I decided to give him lunch, before his sleep, which he ate very quickly, and then slept for a few hours. When he woke up, he was sitting, eating another plate of food when Nathan got home from work. Nathan didn't see the plate of food I had made for Felix, so when Felix walked over and asked him for food, Nathan went and made him another one. He wandered back and forward between the two plates and ate both! Unbelievable!! In only a couple of hours, it was dinner time, and Felix ate even more food. Being Aaron's birthday today, we had birthday cake after dinner. I was relieved, when Felix picked up his piece of cake and threw it off the high chair and onto the floor. Thank goodness! I didn't think he could have possibly eaten anything else.

Family

Bedtime smiles

Do you ever have one of those days, when you look at your kids and just think, "Wow! I am the luckiest person alive!" I've had a few of those moments today. Amy, our eldest daughter (21), called to tell me she had just picked up some letters from her old school. Twelve years ago, Amy (then aged 9), Bekah (then aged 8), Daniel (who was 11), and Joel (who was 6), put a letter inside a time capsule at their school. In the letters, they wrote about what they thought they would be doing in ten years time (the capsule was opened a couple of years ago). Amy went to visit there today and was given the letters back. She promptly sent me photos of them and we had a good laugh at what her goals were, at the age of 9! It got me to thinking about the kids when they were younger, and how precious they were. It also made me think about where they are now, and how much my love for them has grown even stronger. I am so proud of all of our kids! However, it must be said....of course there have also been days when I would gladly have given them away ;) (Love you kids!)

Asleep on the couch

Another one of those moments was tonight, after we had got Felix ready for bed. Isaiah (14) and Aaron (13...in 2 days), were playing with Felix and making him crack up laughing. It's always such a joy, for us as parents, to watch all three of the boys having fun together. In times like that, the age gap doesn't matter and the fact that Felix has Down Syndrome is irrelevant. Their laughter continued all the way into Felix's room as we all put him to bed. As he lay down with his monkey and his 'ugly' sock cat, he had the biggest smile on his face. He was so peaceful; secure in the knowledge that he has a family who adore him and would do anything for him. Love our boys!

Fun with his brothers

This morning Felix had a follow up appointment with the GP to check his ears again! We had been putting the bicarb drops in them to dissolve the wax but, the last time we checked, his right ear was still blocked. Thankfully, the drops did their job this time and the GP could clearly see his right eardrum. As we suspected, there is no grommet in there any more. Felix goes back to see the Ear, Nose & Throat Specialist in a couple of weeks, so I'll use the drops prior to going, so they can have a clear look as well. I'm not sure where we go from here, but it would be great if they could multi-task and do his grommet, MRI and his (possible) hernia all at the same time. I think that's wishful thinking though!

Afternoon walk with Daddy

Earlier in the afternoon, Felix was sitting on his picnic mat, eating his lunch while he watched Playschool. It's the time of day he likes to sit quietly, undisturbed by anyone, and eat his lunch. After a few minutes, he had gone very quiet, so I went to check on him. He had climbed up on to the couch and was fast asleep. He must have been so tired. I only ever recall him doing that once before when we were at my parents house. He slept soundly for a couple of hours, looking very tiny up on the big couch. He looked a bit bewildered when he woke up. I don't think he was sure where he was. He woke up in a great mood though, and giggled and smiled his way through the rest of the day!

Group Therapy

Still cute even with a dirty face

Felix spent the morning, with me, making some paper cranes for a centrepiece I'm making for the fundraiser next week. He played with the off cuts of paper, while I folded. He loves little pieces of paper, crumpling them, folding them and trying to cut them with the scissors. It kept him occupied while I attempted to perfect the paper cranes (hats off to the Japanese students we've had stay with us before; they're not easy to make!) He thought the cranes were great. He sat, signing 'bird', and making a funny squawking noise every time I finished one of them. At least he recognised them as birds; I must have done something right!

When the Occupational Therapist was here the other day, I asked her again about group therapy for Felix. She had mentioned it towards the end of last year as something that would benefit Felix, because of his uneasiness around other children. She said there was a group running already, but it was for children, Felix's age, who weren't walking yet. Thankfully, for us, some of the people in the group hadn't been attending so she asked if we'd like to bring Felix along. She also recognised that, although Felix is walking, he's not boisterous and wasn't going to intimidate the other children. If anything, he would be more worried about them.

Brotherly love

Today was Felix's first group therapy session and he really enjoyed it. There were a few different activities set up around the room and the idea was that the children start on one activity (by themselves) and then move around the room, every ten minutes or so. The Occupational Therapists/Physiotherapist watched them play and observed what they were able to do etc. There was also a welcome song at the beginning and a goodbye song at the end, with another break for another song in the middle of the session.

I don't want my shoes on!!

Felix started at the chalkboard, and he was amazing today. He drew some beautiful circles to start with, which impressed the Occupational Therapist. After that, she put the chalk at the bottom of the board and asked Felix to draw a line 'up', and she drew one. Felix copied her and drew a line going up. They did that several more times and then she started at the top of the board and drew a line 'down', and asked Felix to do the same, which he did. She looked pretty pleased with him, and then tried something a bit harder. She asked if he could start at the top and draw a line down, and back up again, like a 'V'. I was doubtful he could do it, but the doubt disappeared in a split second, when he did exactly what she had asked. He drew a perfect 'V'. The OT was really excited about that, and I was pretty blown away. He's always full of surprises!

Felix enjoyed the other activities as well. He tried to thread some beads onto a pipe cleaner, and pushed some shapes into playdough. He played with some puzzles, and enjoyed putting plastic coins into a piggy bank. He had a great morning, and the highlight was that, after initially being shy, he was quite comfortable with the other children, and even threw the ball back and forward to Jacob (his little friend) a few times. All in all, it was a very positive afternoon.

8 More Days

I had tears today! Nathan and I took Felix to Kindergym together. During song time, Felix walked over to the box and got out a shaker out and gave it to Daddy, then he went back and got one for me too. Finally, he went and picked one for himself to use. He has never had the confidence to do it that many times, with so many children around. We were very proud! It got even better when the songs started. He actually stood in the middle of the circle and danced, and shook his shaker. My eyes are welling up now just thinking about it. It was such a precious thing to see him so caught up in the music and dancing, and oblivious to the other children dancing beside him. It's such a little thing, but to us it is huge!

I'm so excited that in 8 more days, it will be World Down Syndrome Day. It's the second year it has been officially recognised by the United Nations, which is really exciting! I have been working hard at planning a fundraiser to coincide with the day, to raise money for the Early Intervention class at Down Syndrome South Australia. Even though we haven't been able to take Felix to the Early Intervention class more than a few times, due to distance, we truly appreciate the amazing job they do to enhance the lives of little ones, with Down Syndrome. The times we have been there, it has been an incredible experience for us, and for Felix.

If you live locally and would like to join us to celebrate the lives of beautiful people, just like Felix, we would love you to come. I have attached a flyer about the day for anyone who is interested. If we have never met, please come and introduce yourself on the day. It would be great to meet you. If you can't make it, but would like to make a donation, please email me at kpaskett86@gmail.com for more information.