Sunshine and the Berry

I'm still trying to get up to speed with the technicalities of blogging but I'm desperate to do it. It's so difficult to know where to start with this blog as there is so much that I  want to share yet more amazing things are happening everyday.  There are still some posts that I know will feel very painful to reflect on and write.  My pregnancy journey for one and and Milo's cardiac surgery for another yet the post on Milo's feeding journey will make me feel full of pride for everything we have achieved.  But I thought today I'd just touch base with Milo's development and also a little bit about his breathing.

Milo at the moment is an amazing 8 month old who has recently found his hands and is loving exploring the texture of my face, my hair, silk scarves and loves to grab hold of anything with rings on.  He squeals with delight whilst rolling and yesterday he mastered rolling from back to front, which is an amazing achievement considering how poorly he has been.  Having down syndrome means that he has low muscle tone which makes learning to sit, roll, walk etc a real challenge and basically means that we both have to work really hard to help Milo achieve what other babies can learn with ease. Milo is a real trooper though and his determination to achieve is admirable.  Only 6 weeks ago he was having trouble holding his own head up without support so it seems as though he has come on in leaps and bounds recently.

I've had real fun this week collecting items for his sensory basket which is a collection of interesting household objects for him to feel and explore. Necklaces, brushes, massage rollers, ribbons, a pine cone, a mirror, to name but a few!  I'm finding it slightly addictive collecting interesting objects to put in his basket (it's actually a box that we use!) and managed to get quite a few bits for 10-20p each at the car boot sale at the weekend.

The other thing that Milo has loved to play with is foil blankets.  He squeals with delight when I lie him on one as he pulls it round himself and opens and closes the sides of it. We've definitely had value for money from it! We've turned his jumperoo into a space ship with it, cut it up into hand held shaking pieces and put a bit on his cot mobile to make it more interesting.  I love finding interesting sensory ways to stimulate Milo and I'm really looking forward to him starting portage soon as this should give me more ideas of ways to stimulate his development.

Milo's Breathing

Milo has had chronic issues maintaining his oxygen saturation levels (particularly when he is asleep).  Before he had his complete AVSD and PDA repaired  we weren't sure how much his difficulty was due to his heart failure. But since the repair it has become clear that the recurrent chest infections are a chronic issue and were possibly just made worse by the heart failure and pulmonary hypertension at that time.

This video shows Milo at home showing signs of respiratory distress including fast breathing (tachypnoea)  subcostal and intercostal chest  recession with tracheal tugg by his neck and head bobbing. Please if your child shows any of these signs whilst breathing seek urgent medical attention. Unfortunately for us at that time Milo displayed these signs off and on for weeks which made getting him reviewed a very tricky decision, having said this he was only actually allowed home for a few days over Christmas.  As you can see he was already on home oxygen at that time but he was readmitted over the weekend after this episode.  Even when well now Milo still shows some mild subcostal recession and we hope with time that this will improve.

  Last week I took Milo back in to the hospital to be assessed as he was showing signs of  respiratory distress (chest recession, wheezing, low oxygen saturations, head bobbing whilst feeding) and he had a nasty cough.  I have always found it difficult to gauge perspective on the severity of Milo's symptoms as at one stage his symptoms were very severe and this almost became the norm. I was pleased though when he didn't need to stay in this time but instead was given salbutamol inhaler with a spacer and face mask to use to help to open up his airways and steroids to reduce any swelling.  He had yet another chest X ray (the poor fella must of had about 30 now) and a kind nurse had to help to pin his legs down whilst I held his arms above his head, as bless him he just wanted to roll over on the couch!

There's been no sign of a bacterial infection this time and he's had no fever and stayed relatively happy in himself so that's great, although given his track record of nasty chest infections we agreed with the Dr to give him a short course of antibiotics to cover him through this period.   He's got a noisy area of consolidation in his left lung which needs me to do 'physio pats' on to help to break it down.  He always seems to have problems on this left side and the consolidation certainly isn't a first but it's also the side where he had his chylothorax / pleural effusion post cardiac surgery. Anyway he's done great since we were able to use the inhaler although being on oxygen 24/7 is always a bit of a burdon, and tricky now he's more active and grabby!  Unfortunately his symptoms came back later in the week and his oxygen requirement crept up again.  This time though he's sounded a lot more 'croupy' with a constant nasty wheeze, yet another chest x ray later which confirmed a small area of collapsed lung or consolidation and they've allowed him home again with more medication.  They've given him long term inhalation steroids to help with swelling in his airways this time but it's frustrating to see him struggle so much with something so simple as breathing. I'm amazed that throughout this whole recent episode of breathing problems he's been such a happy, roly, squealy boy!  Milo you really are a trooper and I'm so proud of you x