No more o2 at night

Nathan's oxygen has been turned off for two nights now. The respiratory specialist was pleased with his overnight oximetry test last Monday night. The plan is to now have it off for a month and see how he is going. Hopefully he will stay well and cope without it. I think I will feel more confident after a week of him being in air. It has helped that he has been in air for his day sleeps for a little while now. So I know that he can sleep comfortably in air.

I am so looking forward to cleaning out his room and getting rid of the tanks, tubes and tapes! All plans to set up his room as I woud have liked went out the window when he needed the oxygen as it takes up space. We still have a feeding pump on standby for when he doesnt cope with bolous feeds. It will be nice at some stage to be able to get rid of that too.

Collingwood Children's Farm

Was so nice to come back here again. Last time we were here Nathan was sick. He was wanting to chase the ducks and chickens around the yard. A poor guinea pig got a good squeeze. Nathan even milked a cow this visit. The lady helping said "He's got a strong grip!". A few squirts went into the bucket.

It was good to go with Aurora Early Intervention and learn a few more Auslan signs. I now know Auslan for farm, farmer and guinea pig!! All useful in everyday suburban life.

Aurora Early Intervention Group. Collingwood Farm

Piano fingers

A trip to the zoo my darling

We took nathan to the zoo last week. It was so nice to go the day after his oxygen test. It was like a little celebration for us.

He loved the monkeys, orangatans an the butterflies. He wasn't overly interested in some of the other large animals. He seemed more interested in the fencing and landscaping! Perhaps it was because the mountain gorillas were in their cage due to cleaning, the lions were sleeping, the elephants were not running around and the giraffes were standing chewing on grass. The monkeys were swinging, the orangatans were playing and the butterflies flapped around and one even landed on daddy's shoulder.

It was a good morning out. A couple of hours were enough for him. We hot footed it around the zoo. We bypassed the reptiles and aussie animals but we saw most other things. We enjoyed it.

Fundoplication

Respiratory Doctor is keen for us to have Nathan booked in ASAP for a fundoplication. This where they take some stomach and tighten it around the oesophageous. Hopefully it will stop his ongoing reflux and vomiting.

I told him how we were feeding him such small amounts and the frequency and he asked me if we were doing this to avoid a fundo?? I guess we are doing what we can to avoid it. It is starting to seem that it may be a good option but we're not 100% sure yet. It is hard to know whether to wait and see if as he grows he will improve or to bite the bullet and get it done. We don't want him to have surgery if there is another way. It would be nice to wake up tomorrow and it's all better. I was a bit upset when the doctor was suggesting this as we have had such a good few months and I really didn't want to think about surgery and recovery time. It was a bit of a kick to how positive I was feeling about things. Have to try and look at this as a positive thing to improve his situation with his reflux.

Waiting for the gastro specialist to call us and have a chat again. We were booked to see him in March but that is not soon enough apparently.

Overnight Air Test

We had a great overnight air test. This was the first night in about two years that Nathan has been all night without oxygen (first intentional night- have had a few mishaps where we forgot to turn the tank on. Ooops!). He went really well. The saturation monitor hardly beeped and when it did it was mostly due to us not having the setting for his heart rate low enough. He only had two times that I was aware of where he dropped a bit low and I think it was mostly due to his postion. I was so pleased that we didn't need to put the oxygen on him overnight. It was a much better result than I expected.

From here we need to wait for the specialist to call after he has seen the results. If he is pleased then we will take him off for a month and se how he goes. If he loses weight or doesn't seem himself then we will do another test or put it back on. If all is good we will check in another month.

my oh my

It's been a while since I've posted here.

Since the last post:

The bottom shuffle has a new look. This new and improved method is getting the little man around the house. He is now exploring and has discovered the box of lemons in the kitchen. he thinks they are great for throwing around. hence the odd impromptu game of cricket. I'm the batter with the wrapping paper for my bat and Nathan is the bowler!

Nathan is currently learning how to negotiate stairs. We have one little one into our back room which he can turn a little and plop down without too much drama. As for a greater drop or multiple stairs that will need a bit more practice.

As he is moving around more we are discovering that he has a great interest for heading out the door to explore the woder world. Need to make sure I shut the door behind me or assist him out to a safe. It's a great thing.

His little legs are now on the move and he is wanting to walk with assistnace all over the place. No more sitting contently on our knees. His soldier legs are starting to bend a little.

We were all over the gastro in a relatively short time. Nathan's feeds have taken a long time to return to what they were prior to becoming sick. We have just got back to 50ml bolus feed every 45 minutes. So we are down to 12 milk feeds a day rather than 15. Still need to take it slowly to stretch his tummy. Seems we are pushing the limits at the moment but should settle soon. He had a few unexpected projectiles this morning due to a build up of air I think. All fun.

2 day stay

Nothing was staying down so after a trip to the gp a call to ace program at rch we made our way to emerg. dept.
We stayed two nights in an iso room as not sure what the cause was. At the moment we are on pump feeds with minimal formula and gastrolyte to make up the rest. thought we were going well today until we had a fountain shoot out as I did a nappy change. there were tears. all that time to get it in (50ml/p.hr) and it flew out. oh well back to gastrolyte. he'd only had 250ml formula today.

Hubby also came down ill last night. guessing its the same thing. At least its not a blockage.

eye test

eye test was all good. We go back in one year unless eye turning becomes more regular or gets worse. I'm very pleased. Glad we have accesss to all sorts of things to help with sight, hearing, walking, eating but sometimes it's nice to hear come back in a year.

Down Syndrome Awareness week 08

Down Syndrome Awareness week is this week. This morning we attended a morning tea to celebrate 30 years of Down Syndrome Victoria. Much has changed over the last 30 years as far as opportunites for people with DS. Hopefully much more can change over the next 30 years.

You can visit DSV website for more events, articles, research etc.
www.downsyndromevictoria.org.au

Dianne Tymms, who is in my DS support group, wrote an article in this months Melbourne Child magazine about her twins, Louisa and Harry. Harry has DS.

Specialists

For those who are interested in who we see if you are looking for a specialist:
Cardiologist: Michael Cheung RCH
Respiratory: John Massie RCH
Gastroenterology: Tony Cato-Smith RCH
Endocrinology: Margret Zacharin RCH
Opthamology: David Mackie RCH
Audiology: RCH/Australian Hearing
ENT: RCH
Physio: SCOPE
OT: SCOPE
Speech: SCOPE
Teacher of the Deaf: Aurora
Hearing Impaired Early Learning Group: Aurora
Orthotics: Orthotic Innovations Surrey Hills, David Philips
Paediatrician: Bill Capell
Dietician: Box Hill
Stomal Therapist: Box Hill/RCH
Osteopath: RMIT Clinic, Paediatric Specialist: Nahla
GP
Down Syndrome Victoria: My Time Parent Support Group

I guess this is why my calendar is pretty full!

Do the Shuffle

Nathan is on the move. He has worked out how to shuffle on his bottom. It looks like hard work. He basically lifts his legs up, while seated, and splits them out wide and scoots forward. There is an awful lot of heel banging that goes on and it is inch by inch progress. But he reaches his destination. At the moment he only moves about one metre. I'm sure as he adjusts and masters his shuffle technique that he'll be travelling greater distances.

http://au.youtube.com/watch?v=Z9TpNrYfxes

AFO's

This morning we went and picked up Nathan's AFO's. They are his jungle legs as they have prints of jungle animals on them. The orthotists took before and after pic's of his feet with/without the AFO's as he was saying there is so much difference. He is hopeful that Nathan won't have to have these ones for too long (6 months or a bit more) and then he can have shorter, ankle length ones. He is pretty sure he will always need some kind of additional support for his feet/ankles sue to his low tone.

Nathan was very good when we put them on him. We cheered a lot and he had a big smile. We'll see how we go over the next few weeks. Orthotist would like us to work up to 8 hours a day. Just have to keep an eye out for any red patches that don't clear after 30 min or so, any blistering or callouses that may form. If this happens we go back for some adjustments to be made.

Just need to go shoe shopping for shoes to fit.

Football Grandfinal Day

Aunty Krissy, Nanna and Grandma are cats supporters, Aunty Bec and Poppa are Hawthorn supporters. Hubby goes for Carlton and I cheer for Geelong, Hawthorn and Carlton in no particluar order. Who will Nathan cheer for?

On Grand Final Day he was dressed in Cats attire as we went to Skilled Stadium to watch the final. He didn't cope overly well with the noise so it was probably a good thing that Geelong didn't score too many goals! So most of the day was spent sleeping and clinging on to my husband or myself.

Next week we are off to Waverly Park for a morning tea to celebrate 30 years of the Down Syndrome association. Hawthorn Footy Club are community partners with DSV. So Nathan may don the Hawks colours yet!

picnic afternoon tea

tears

For the last month Nathan has been extra sensitive to any loud, high pitched or sudden noise. Any of these set him off into tears and extreme clinginess. Babies crying, toddlers screaming, plates clanging, toys banging the list seems to be growing. It doesn't seem to matter if his hearing aide is on or off. It is extremely difficult as in most of the places we go and the groups that we interact with toddlers and babies are present. Toddlers generally don't like to share toys, toddlers fall over or bump heads, toddlers squeal and cry. It seems we get over one incident and then another child will squeal or cry and we begin again.

Nathan was very sensitive to loud noises when he first came home from hosiptal but he has greatly improved and it seemed for the last year it hasn't been an issue. I am not sure what has brought on this behaviour. Hope it doesn't last too long.

videofluroscopy

We had a videofluroscopy done yesterday at the RCH. The plan was to check that nathan is safe to be eating and drinking and that he is not aspirating. I was 99.9% sure that he is swallowing ok but as I am after help for his eating I needed to get this done.

I took quite a selection of food with me to hopefully allow for him swallowing at least one of these things. Once the barium was mixed in the puree became quite thick. In order to get the right consistency I had a taste. It was really chalky and stuck like grit to my teeth. I was unsure he would swallow anything after tasting it myself.

He did really well. He was hungry as it was after 2pm by the time we had the test done. He had several mouthfuls of puree and a drink of milk mixed with the barium. We had a couple of accidents where he hit the bowl and barium and puree went all over his face and chest. It resulted in a good couple of swallows that were caught on the x-ray. Again when he was having a drink he moved suddenly and we ended up with Barium all over his top and down his chest.
The results were good. His swallow is good and we can keep feeding him what we are feeding him. Now I just need help to keep his mouth shut and stop his tongue poking out the food.

Down Syndrome Awareness week Oct

DS awareness week is coming up. There will be a thing happening at Waverly Park with Hawthorn Footy club. Trying to think of ideas to raise awareness and some funds possibly.

New Skill. Getting to sit by self

Nathan is now getting to a sitting up position by himself. He likes to practice things in his cot before trying them out in the big wide world. So that is where we first found him sitting up, in his cot.

We were very excited to find him like this and so went over the top saying how clever he was, as you do when your child does something new. Now we have a new dilemma during the day. We lay him down for his sleep and he sits up. we lay him down and he sits up etc. I have tried leaving him for over an hour and he happily sits and calls out. Therefore not much daytime sleeping is happening. On two occasions he has fallen asleep while sitting up. He has then ended up with legs spread and his face down on the mattress in front of him. We have then been able to move him into a more comfortable position when he is fast asleep.

At least it is only in the day. Next will be standing!!

over vomit

starting to think about a fundo.
have been stubborn and not wanting it but am really over the vomiting and it may be really helpful for him. Will talk to gastroenterologist at next appointment about it.

Still need to get mic-key from stomal nurse at hospital- RED TAPE!!!!

Justin Ridler

At the start of the year- Just after Nathan stopped having to have O2 on in the day- we had some photos taken through DSV for publicity. Justin Ridler took the photos. We were first up. There are some great ones. Nathan was on the cover of DSV mag in summer. Look forward to getting some printed and framed.

AFO's

Had an appointment with an orthotists.
We just need to wait for funding for the AFO's
It is thought it will take 4-6 weeks.
Nathan will then get casts made of his legs and AFo's made.
Hope is this will help support his ankles so he can cruise around more easily.
In six months or so we will then get an ankle length version

EEG

Nathan had an EEg the other week. It came back abnormal but not sure of the cause of the small siezures he had been having. Hven't seen one for a while. Need to just observe and report back to paediatrician if we see any eyelid flickering or eye rolling while he holds his breathe

Early Learning Group

We had our first day at the early learning group for children wth hearing impairments.
We had a fun morning. We took home a DVD with songs and actions in sign. Nathan is picking up the actions fairly quickly. Almost as quickly as us.

The ELG is every second Tuesday. We have a Teacher of the deaf come every other week to focus on speech and listening.

let's go sliding

Nathan has worked out how to slide around on the wooden floors. He spreads his legs, places his hands between his legs and pushes himself backwards.
He's starting to get quite quick at moving around. I'll have to watch what I leave lying around!

Agghhhh

After such a good start with the hearing aide we are now struggling to keep it on. He is loving to pull it off and thow it wherever he can as far as he can. I have heard stories of kids with DS throwing their hearing aides out of bus windows. At least Nathan is not riding on a bus by himself and he can't get down the car window!!

Hopefully this stage won't last too long or his ears will improve.

let's get moving

Nathan is now trying to walk with support.
He took his first self initiated steps last weekend in a cafe at Barwon Heads.
He lifts his little legs up like a Taiwanese soilder. Can't think of a better way to describe it right now. It is very cute and I am so excited taht he is making connections with moving his legs. He still needs loads of help with actually staying up and shifting his weight from one side to the other but we don't need to give him as much prompting anymore. Very exciting.

He is also making progress towards crawling. He can stay on his hands and knees for a bit and moves his hand forward and his legs. Still such a long way to go to build up strength stamina and get it all together but huge steps from where he has been.

No progress on the bottom shuffle. Still 360 circles!!!

first words 'bye bye'

Nathan said his first words the other day.

He waved and said 'bye bye' to the carer.

Not Mummy or Daddy

I still had a tear in my eye and was very proud of my little man.

Winter days in july

Hearing Aides

Nathan got his first bone conducting hearing aide on monday. He has been so good wearing it all the time, apart from when he is sleeping.

He seems to be more vocal and is loving making noise by banging anything he can get his hands on.

Latest loves and things that bring a smile to my face: Pulling tissues from boxes, Pulling Nappy wipes from boxes, Building up speed doing the 360 degree bottom spin, Reaching out for cuddles with the grandparents

New signs: Baby, No deal!!, Working on pointing fingers

Turning up the VOLUME

It was so nice today to get out of the house and go for a walk. I think Nathan enjoyed the fresh air. Even though it was cold and windy he was snuggled up in his pram.

This afternoon we are off to the Australian Hearing centre to discuss hearing aids. Nathan needs a bit more volume so he can hear the world around him more clearly. Bit annoyed that the hearing centre we were going to didn't refer us to the Children's. I am glad when we had our recent stay he was able to be seen and be tested while he was having his afternoon sleep. So we'll see how we go. I have no idea how he will keep them on or in??

Finding the starting post

For a while (about two years) I've been thinking of writing a blog for my son nathan. The reason I haven't is that I haven't known where to begin.

So much has happened in his two years of life that it has been rather overwhelming. Therefore I have decided I will begin from this point. I am sure much of his journey will end up being woven into the posts that follow. Sometimes we need to begin with where we are at and follow the paths that are revealed.

Nathan is on the road to recovery. He has been very ill with Bronchilitis/RSV (nasty virus) the past three weeks or more. As he is still coughing he is partially under quarantine. Unfortunatley this means no playing with children his age who have low immunity and no visiting newborns. Very sad as I am sure he would love to see his new baby cousin, Jasmine Hope, especially as he has recently learnt how to sign 'baby'. It is so cute to watch him fold his little arms in front of him when we mention the word baby.

As it is a wet day he has been home playing with his Daddy, who is not long home from a few weeks in Indonesia. No MOPS (group for mum's of preschoolers) today due to his cough. He has been playing with his helium get well balloon. It is slowly deflating but has provided much entertainment. I wrapped my fluffy scarf around him and he was most impressed with the feel of fluff on his mouth. He looked very snuggly indeed. Maybe some cuddles from Nanna and Poppa are in order later today!