Saturday, 28 September 2013

Birthday Boy

Beautiful boy

Visiting the sheep with Daniel

Playtime with Amy. We miss you x
Today I'm feeling very reflective. Tomorrow will be Felix's third birthday and, as I think back over the past few years, I feel so proud of our little guy and how far he has come. Watching him develop and grow has been an incredible blessing. Things haven't always happenend quickly, or perfectly, but they have happened. We have watched Felix go from crawling to walking, and these days he is almost running and trying to jump. He can communicate beautifully, both through signing and his new words. He is gentle and kind with other children, and isn't so frightened of them anymore. He has a fantastic sense of humour and knows exactly what to do to make us laugh. He knows when we're upset and will either cuddle us, or clasp our hands into each other's. There have been days when I have felt overwhelmed by the number of different therapies and appointments I've had to drive to. I've been upset by medical professionals and even strangers in the street. But, the positives WAY outnumber the negatives. We have learnt so much since Felix came into our lives. We are so much more patient, we're more tolerant of others and their struggles, and we enjoy the little things in life more than we ever have before.
Bekah, with a tiny Felix

 Joel with Felix and
his son, Noah
This week, we met Felix's new Paediatrician. I must admit, I was a little anxious. I had heard very little about him, so I wasn't sure what to expect, but he was absolutely lovely! He was friendly to Felix and I, but also to Aaron (13 years). I was really impressed with the way he spoke to his Intern as well, after having experiences of Doctors being rude, not only to us, but also to their Interns. He didn't rush us, but took plenty of time to learn all about Felix's medical history, and the amazing little person he is. Medically, he checked out his 'questionable' inguinal hernias and seemed to thing he will definitely need surgery to correct them. I mentioned to him that I was worried about Felix having possible food intolerances (his nappies are revolting). He wants to rule out Coeliac's disease, so he ordered a blood test, which we had done after the Paediatrician visit. As usual, Felix took the blood test in his stride; no tears, not even a whimper. When I was able to put him back down on the floor, he blew the Nurses some kisses, waved goodbye and walked out the door. Such a little champion!!
Fun with Joshua

Sleepy cuddles with Isaiah
I briefly mentioned our chickens, in the last blog. We decided it would be good for Felix to have some more pets (to add to the 3 dogs and 3 cats). I think animals are wonderful therapy for kids and great teaching tools (learning to be gentle, feed them, have responsibility etc). Our ownership of chickens had a shaky start. Unfortunately, 2 days after our first 4 chickens arrived, we were met with a smiling dog in the chicken coop, and 4 very deceased chickens. Once we put up an extra fence and spent the day 'dog-proofing', we picked up another 4 chooks and, I'm happy to say, they are doing very well and giving us lots of lovely eggs. Felix loves the chickens. He has already learnt to shut the gate behind him, and how to throw the chickens their feed. He likes to splash in their water bowl, and thinks the eggs are balls, so we still have a little way to go with our 'learning', but he has been very gentle with them and they are amazingly tolerant of him, letting him follow around behind them.
Our two baby boys, Felix and Aaron

We are currently looking into finding a sheep to add to our menagerie. We don't want one that needs more than one bottle of milk a day. I'm way past the stage of wanting to get up at night to feed a lamb. I know Felix will really enjoy having a wooly friend. Since we moved to the country, he wants to visit the neighbour's sheep all the time. "Sheep" is a word Felix uses all the time now! We will have to see how the dogs like the introduction of a sheep to the backyard. I really don't want it to have the same fate as the first lot of chickens. It will be a very gradual introduction I think!!

I'm still so excited about the way Felix's speech is coming along. He said Bekah's name the other day, "Kah". He also says "Mel" for Mel and "Oh" for Noah. He has been calling Aaron "Aa". He says "cat" and "bubble" perfectly, and when he sees a photo of a sleeping baby, he says "Awww, baby ee" (asleep) and signs 'asleep'. Little tiny sentences, which are so exciting. After shutting the chicken's gate, Felix signs 'bye chicken'. With his fantastic grasp of signing and the development of his speech, it is getting easier and easier to understand what he is saying to us. I'm so unbelievably proud of him! He tries so hard, and I'm inspired by his perserverance.
Our gorgeous birthday boy!

As I sit here typing, Felix is sitting next to me, full of giggles. He is playing on his ipad and finding something absolutely hilarious! Listening to him laugh brings me so much joy. I'm looking forward to seeing his little face tomorrow morning when we sing happy birthday and give him his presents. He's too young to understand just how much he has changed our lives, but I hope one day he will know how very precious he is to us, and how thankful we are that he chose us to be his family. Happy 3rd birthday little guy! I can't wait to see what the next year brings.......

To all of our kids, Daniel, Amy, Bekah, Joel, Joshua, Isaiah and Aaron. Thanks for loving this little guy and for accepting him just the way he is. I know you wouldn't change a hair on his head x x x

Thursday, 19 September 2013

Chickens and Bubbles

Big smiles

Time has got away from me again. I can't believe I used to blog almost every day. I'm not sure how I found the time!

Felix saw the Surgeon last week in regards to the possible hernia he has in his groin. This Surgeon was so lovely, and after our awful visit with the Neurosurgeon a couple of weeks ago, it was a welcome relief. From the second we walked through the door of his office, he was all smiles and full of praise for Felix. He even asked if he could take a photo of Felix wearing his "Keep Calm. It's only an Extra Chromosome" tshirt! He thought it was great!

Hello chook!
The Surgeon examined Felix and confirmed what we already know. His testicles rise up into his abdominal cavity very easily; they are always up and down. So, because of this, it's difficult to see if the lump in his groin is a hernia, or if it's just his testicle. He wants us to observe him for the next 6 months and then we'll reassess and see how it's going. He has a slight hydrocele on each side as well which we'll monitor. During the examination, the Surgeon said that if he ends up having to operate, he could circumsise Felix at the same time. It's something we discussed when he was born, but we didn't end up doing it. Once he was discharged from the SCBU unit, we just wanted to go home. We'll definitely take him up on on it if Felix has surgery. It will be one less thing Felix will have to worry about when he's older. As the Surgeon pointed out, Felix may be a pedantic clean freak (like his Mum), or he may be totally laid back and maybe not shower as often as he should. By circumsising him, it will be one less thing he has to worry about it. I must admit, I'm not looking forward to it. He's going to be very sore, and I'm going to feel really mean :(

We met Felix's new Speech Pathologist this week. We had to go through a lot of paperwork, so Felix didn't get too much actual therapy this time around, but he made sure to use a lot of his new words. His new therapist was really pleased with him and is looking forward to working more with him the next time she sees him.

Walks with 'Papa' and 'Ee'
Felix had his second lot of hydrotherapy a few days ago. I was glad to see he enjoyed it as much as the first time. Part of his therapy was balancing, while sitting, on a foam board. He did that really well, but the part that excited me, was when he wriggled to the edge of the board and threw himself towards me, into the water. He didn't wait for me to hold on to him, he just launched himself into my arms. I thought he was pretty brave considering he hasn't spent much time in the pool over the past year.

Bubbles for Blake x x x
We were excited to have my parents come up to stay over the weekend. Felix has learnt to say "Papa" and he says "ee" for Granny (Gran-'ee'). It was so beautiful to hear him wake in the morning and call out, "Papa...Ee" and go wandering off to find them. Felix enjoyed showing them the animals in the town, and taking them to see our new chickens, which he loves. They thought it was funny to see him walking around with the chickens, bobbing his head up and down, just like they do when they peck the ground. He's a funny little character. He is such a Papa's boy, and spent lots of time sitting on Papa's knee, reading stories and giving him cuddles. Mum and Dad both love going for walks so Felix was in his element. One of his favourite things to do is to go for walks, so he had a great time. He giggled his head off when, at the playground, Granny kept following him down the slide!


Sadly, the little boy I wrote about in my last blog, passed away this week in the arms of his Mummy and Daddy. He fought so hard to stay with them, and will be remembered for his strength and his incredible smile. Tomorrow is the celebration of his life. We won't be able to attend, but we will be dressed in bright colours and blowing bubbles, just like his family requested. Rest in peace, Blake, you will always be remembered and your family will always be a part of our special community. Sleep sweetly, little guy x x x

Thursday, 5 September 2013

Fun at the Zoo

Loving the meerkats
It has been an incredibly busy few weeks, with so much happening. I better just focus on the things to do with Felix or I'll fill up twelve pages!

Felix had an appointment with the Neurologist yesterday to talk about booking him in for a follow up MRI scan. For some reason, the hospital made a mistake when they made his appointment and booked him in with a Neurosurgeon instead of a Neurologist. I don't know what it is with some Specialists but, it seems, the higher their qualifications, the worse their bedside manner seems to become. We were totally oblivious to the fact that we had been called in to a Neurosurgeon's office, instead of the Neurologist but, within minutes, the Surgeon realised the error and let everybody know about it. He seemed angry with us, angry with the Nurse and angry with his Intern. Wow! The Nurse rolled her eyes and gave us a little wink and, later, explained to us that what he lacks in bedside manner, he makes up for in skill. He would want to be good, because he was so rude!
Saying hi to the deer

After his little tantrum, the Neurosurgeon told us that he would be able to order the MRI for us, and see us for a follow up appointment after (I'll be looking forward to that one...not!). He had a look at Felix's previous MRI and doesn't believe he actually has hydrocephalus at all. He thinks he just has larger than average ventricles. There is no fluid build up anywhere, and nothing to indicate anything sinister at all, which is awesome! Felix's head is now measuring on the 50th percentile, well within the normal range. The Neurosurgeon's one saving grace was that he was nice with Felix, so I was really pleased with that. He even commented on how happy and chatty he was, and how long his attention span was, as he sat the whole time and played with one of those frames that you push beads along, up and down. Felix's MRI is booked for early December, so hopefully it will just be routine and the results will be what we expect. I wish he didn't have to have a general anaesthetic, but at least it's just a light one.
Following his friend, the magpie

After leaving the hospital, we took Felix to the zoo. He walked around for about 3 hours, stopping to look at things along the way. He particularly loved the meerkats because they were so active, running and climbing and looking at him through the glass. He tried to climb the wall to get in with the water dragons and turtles, and wasn't impressed when we suggested it might not be a good idea. He followed a magpie (native bird) around the lawn. It wasn't bothered by him at all and let him keep walking behind it without flying away. He has a fascination for snakes at the moment and constantly signs 'snake' and says, "Sssssss". He loved looking at them at the zoo, but we are teaching him the sign for 'dangerous' because the one we found in our yard a week ago was deadly and we don't want him thinking he can pick them up. He loved the monkeys, but was a little scared of some of the noisy birds. His favourite part was the children's zoo because he was able to touch the sheep, goats and deer as much as he wanted to. They were so tolerant of him as he patted and cuddled them. It's hard to believe he was so frightened in a petting zoo only twelve months ago! It was beautiful watching him....I could have stayed there for hours.
"So....what's been happening?"

Today, Felix had his first hydrotherapy session. He hasn't been in a pool for over a year, due to issues with his ears, so I wasn't sure how he would go. He happily put his little wetsuit on, let me put his plugs in his ears and his earband on, and walked over to the pool. From the second we climbed in, with the Physio, he laughed. He thought it was the best thing. The hydrotherapy pool was so warm I could have stayed in there all day! The Physio showed me exercises to try and strengthen Felix's quad muscles, by keeping his legs together as he kicked, and picking up balls with his feet. Swimming on his tummy is always a bit difficult because his head still falls forward sometimes and he gets a mouth full of water but, as the Physio pointed out, it's good to strengthen his neck because he has to hold his head up for periods of time. He enjoyed every second of his session and wasn't happy when it was time to get out. The Physio is wonderful, and so beautiful with Felix. I'm really glad it's going to be a regular part of his therapy. Fingers crossed the ear infections stay away!
Such a little old man!

So many of my friend's children (with Down syndrome) have had surgeries recently, or have been ill in hospital. The reasons vary from basic surgeries (grommets, tonsils etc), to life threatening conditions
(pulmonary hypertension etc). It's never easy to see your child put under an anaesthetic, even for routine surgery and it's hard not to panic, as a parent who cares so much for their child. My thoughts are with all of them, as I know I am in theirs when it is Felix who is in hospital. My heart goes out, especially, to one family whose precious son is currently in critical condition. This gorgeous little man has already bravely faced so much in his short life. He will have to fight as hard as he can to get through the new challenges he faces. I pray that his little body will have the strength to do that! I was reminded again, as I looked around the waiting room at the hospital, just how lucky we are. There were so many children there who had such serious ongoing health issues, and we were able to leave with good news. Once more, I felt such a huge admiration for each and every one of those precious children, who are loved as much as Felix is, and for the strength they show.