Progression at last! 

What a lovely relaxing Easter weekend. The kids ate far too much chocolate, we all had a laugh and everyone went to bed happy. 

Monday we decided to make use of our annual zoo pass and trundledoff at a ridicously early time for a bank holiday Monday. However we got to the zoo and ensured that we went on the usual route. Going to the monkeys, off to the Africa enclosures and finishing off by going past the Komodo dragons. Every trip we have to do the same route, every trip we say the same ooo and ahhhs and honestly it’s fine as MO feels safe. We always get to the zoo as it opens and we are out by lunchtime so that MO doesn’t get over crowded. This bank holiday was slightly madder then usual so there were a few times of tension and having to get out MOs new portable sensory equipment but over all it was such a good end to the holiday. 

MOs face when he sees the Komodo dragons makes the whole 90minute drive worth it!

So the kids were back at school on Tuesday. The routine is amazing for MO! He has had a couple of days where he hasn’t coped. For example yesterday I was downstairs while BBG was upstairs napping and I was watching a film with SB and BG. Now MO came straight home and went straight upstairs to watch gumball and calm down and de stress. All of a sudden I hear the door slam and BBG crying. I started to walk upstairs and saw the monitor at the top of the stairs. Usually MO will come down and tell me when BBG is noisey if I haven’t come up at the second sound she does, however yesterday he couldn’t cope with it. I settled BBG and went in to see MO and there he was under his heavy blanket, gumball was on but he wasn’t watching, he just needed to be alone and sheltered. 

We also got a lot of sensory equipment arrive this week! One thing was a chimabout, BBG just couldn’t stop moving! In fact the day we got the chimabout was a physio day and BBG rolled over!! Weeks of doing exercises and weeks of trying and failing and having BBG cry in frustration worked she rolled over 🙂 she rolled over to get to the chimabout, we knew she loved it and that one piece of equipment just in our mind made our girl roll!! Don’t get me wrong she still rolls over by throwing her legs over and then her arms and doesn’t move using her core but she rolled. Sitting up is still no where near sitting and that’s fine she has done a massive thing and I’ll be happy with this for months! She still doesn’t roll all the time but she can do it! 

Doing her physio and doing her sitting exercises. The way her chin is on her chest is how she rests, where her core has hardly any strength her head has to rest a lot. You wouldn’t really notice it as we hold her in a way that makes it not noticeable and this is something you just do as a parent. 

Sensory area at the moment. Thanks to wetogethr we have fibre optics, a projector and some moudoh to enhance the sensory area.

I haven’t been well this last couple of days. I suffer from vertigo. I have never had it before BBGs pregnancy and have now had it a few times. This has been the longest episode. Thankfully Dad works from home but yesterday he did have to go out for a few hours which was fine as MO. as previously mentioned, went straight up stairs and the others watched a movie with me. Today I’ve been in bed with BBG all day. Considering she is 8 months old she acted like a newborn. She was happy in bed all day with me. She didn’t want to move, she didn’t moan or groan she was just content.  It just brought home that she isn’t a ‘normal’ 8 month old. 

We also received a phone call from GOSH this week, her next appointment is 17th July ready for another day of being tested this time in the neuro muscular department instead of the neurology department. I’m not really sure what that day will entail but hopefully they find out what’s happening to our girl. 

Each time I talk to the hospital they keep telling me on her bad days she could stop breathing or her heart could stop, that in itself is scary. As they don’t know what’s wrong that’s what they have to say to remind me but it scares me. It worries me as if she gets an episode when she is a sleep and it’s one where she stops breathing I may not know. It’s stupid and it’s my mind running ahead of me but it honestly is a thought that just keeps coming to the front of my head. This is why I am so hopeful that they find diagnosis so that stuff like that I don’t need to worry about. 

Overall it’s been amazing week. MO hasn’t hit out at school, although has been in his sensory area a lot. And BBG has rolled, although still is delayed a lot. 

I’ll leave on this lovely picture of SB, it just makes me smile and just shows his funny side. Hearing him say ‘I love you mummy’ and ‘look mummy (followed by something funny)’ just brightens up my day.x

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