Life is a rollorcoaster 

So this week has been an interesting one. Yet for not the same reasons as usual.

We have received our dark den, fibre optics and projector thanks to Wetogethr and MO has been his calmest ever. Anytime he starts to wind up we remind him where to go and he goes straight into the den and turns on which ever light he wants and calms right down. Don’t get me wrong there have been times when this hasn’t been able to happen but he is so much better at the moment. We won’t get too excited just yet but I’m hopeful! 

These aren’t the best photos it’s quite hard to photo inside a pitch black tent 🙂 but the video is MO Using his projector and the photo is him showing me his cushions he has taken into it 

Thursday our health visitor came round and told us BBG has gone up to a massive 15lb 7 and has moved up a weight percentile. I was so worried as she has been super grumpy for her. I was very anxious my milk had stopped coming through but after hearing she has gained so much weight I calmed down. Her eating is still not good and she still can’t handle solids. She can’t get the spoon in her mouth and her tongues just tries to lick off the purée. If dad and I are both not free we have to feed her laying down and feeding her solids wears her out so much but she will get there. 

​​

First video is BBG on an ok day, she doesn’t really move much but she did roll over in her front and then couldn’t do any more. 

Second video is BBG eating you can sort of see the tongue and how we have to feed her. It does take 45 odd minutes to feed 1/4 of a jar it is extremely time consuming. 

The health visitor also wants us to video BBG laughing as she can’t synchronise her breathing and muscles when she does this. It is quite worrying but hopefully this is something she will learn and adapt and be fine with in a few months but it shows weakness in her chest breathing muscles which GoSH hasn’t seen before and she has started to make the sound on days where she works really hard physically. She did a similar noise when she was new born after food but she hadn’t done this for a long time. It’s scary as the fact that the consultant keeps saying any heart or breathing problems go straight to hospital has always seemed an over reaction until you realise even a normal everyday event BBG can’t handle. You realise they really don’t know what’s going on with her and that’s scary. 

 As the health visitor had come we missed baby sensory class but while BBG was asleep the final parcel came with the fibre optics in which I plugged in and awaited BBG to wake. She woke up when I was hanging washing out and I put her straight in the den to have a look around, she instantly calmed and within a few minutes was so calm and touching and even picking up the different fibre optic strands! We made sure they were safe for her to put in her mouth as she has started to put everything in her mouth. But she loves it in the den with the lights it has stimulated her so much. 


We also had MOs parents evening. Unfortunately I wasn’t able to go but dad could. It was so lovely to hear that academically he is doing year 2 maths and his English is far from average. It’s horrible to know being on the spectrum makes his socialising and emotional skills, along with his other things, hard for him, but to hear that he is doing so well academically is such a relief. We just need to teach him more and more about the other side of life and improve his skills with other people. 

I have been feeling particularly low this week, no real reason but it has sapped all my energy. I’ve felt horrible for feeling this way, feel awful for just wanting to shut myself away. However Tuesday I decided to fight back, I went for a browse along Leigh broadway and seeing all the little shops was so relaxing, I love little boutique shops and when I left I felt much better. I then took BG to horse riding and spending so long outside really helped, its true fresh air does wonders. Last night I went out to the school fundraising quiz night. I always try to go to everything I get invited to unless I physically am double booked. I was so nervous, no idea why but I was anxious the whole day. Dad calmed me down and sent me on my way and I am so glad he did, it was such a laugh as I knew it would be and again I beat my anxiety. 

BBG just laying on me not wanting me to let her go after I went out for the evening. 

Tonight dad is out and I am just catching up on my TV and blog. It’s actually very relaxing and I am very happy that dad has gone out as well. 

I’ll leave you on this little funny story. Dad told MO we were having a pj day without my knowledge, I while dad is out this morning arrange to meet my mum and go for a walk. SB and BG get dressed and MO refuses he just wants to stay at home. I’m walking out the door and saying good bye to MO and he says he wants to come to nana’s and he will come in his pjs as it’s pj day. So we went to nanas and didn’t go for a walk but played in her garden. 

Wearing pjs to nanas 

Just a few photos to demonstrate this week. 

A lot of SB this week 🙂 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s