Where are we now?

I have neglected this blog. Again. Life has been busy. And we have been coping.

Thea turned 6 and had a lovely birthday. Year1 is going well and she is becoming amazingly mature, if somewhat subborn ( no idea where that comes from). She read in her Harvest Festival, and we were very proud!

When you have a child with complex needs or any addition needs the worry doesnt stop with the SN child. I worry about Thea. Is she dealing with Nate ok? What about school? Does she stress about things? Does she overhear things and not understand? Do we spend less time and attention on her than families with healthy kids? Does she feel left out? Is there any resentment? Does she tell me how she really feels? I know i know i could drive myself round the bend with this. (Ironially i have come off my antidepressants hurrah!)

Thea now has a SWAN sibling pen pal and i hope they will become great friends and be able to share stories and feelings. Though judging by Thea's first attempt at a letter the main conversation seems to hinge on Star Wars lego and One Direction *sigh*.

Nate continues to make progress at natie-rate. He now signs by hitting his chest when he wants a turn at something or to signify himself. He taps his mouth for food too. Because of this somewhat surprising but fabulous progress we are going to start Canaan Barrie on body signing with him! Small but amazing steps in communication.

Healthwise he has been well ( eek long may it last). Our biggest issues at the minute are his ventilation mask and his feeding. Nate has had the same mask since he was 4 months old and obviously he has grown. However the next size mask is huge. This means we are having to find a different style of mask to use which requires lots of waiting and experimentation, no luck so far, and there are very few masks to actually try. Nate's ventilation is still hugely important and when the mask leaks he doesnt ventilate as well and the ventilator alarms anytime he moves as it just doesnt sit right anymore.

To PEG or not to PEG

Feeding is still a nightmare. He won't take any food orally from anyone other than myself or Michael and needs top ups down the ng. The hospice are having a battle keeping the NGtube down during respite, and he is still so uncomfortable with wind build up which needs venting. They felt we should consider a PEG, and to be honest so do i. Im putting the ng tube down several times a day minimum, and 5 times one day last week. Our Paed disagrees, but we have the SALT, resp, neuro and hospice dr pushing for it. Our paed is lovely but clearly doesnt understand the everyday battle we have with food. And in addition simply having the NG is uncomfortble and he won't swallow as well, and is producing loads of saliva and now has meds for it. 

Home

I would like to say that our new home is decorated and finished... but that would be a lie! And there is more disruption to come. Next week we are having hoists fitted in Nate's bedroom, and we are waiting for the builders to ring about preparations for the through floor lift ( basically they will put a large hole in the ceiling/floor)
We also (still) have the old house hanging over us and have a lovely trip to court in a few weeks for the mortgage company to repossess it. Im sure that won't be humiliating at all.

All in all things are ok really.

its all relative, after all