New week, new routine

So this past week and a bit has been quite a change. It was the first week I started a new job and wow even though I used to work full time before maternity leave and I am only doing part time now to fit round BBG and MOs appointments and needs I am exhausted! I am shocked at how tired using my brain for work duties can be. However I also know that soon this tiredness will go and I will be able to do a shift I just have to get my body and mind used to it. I am very lucky I actually really enjoy work, which I know a lot of people don’t so this is a massive tick in the box. Plus my shifts work around school drop offs and pick offs perfectly! I am however feeling awful though. I am very lucky that Dad works from home and so can look after BBG while I am doing my 4 hour shift, however I hate the fact that I am not the one looking after BBG. I feel that I should be the one at home, I should be the one feeding her and soothing her and taking her shopping. However I know this is selfish of me. I know Dad is more than capable of looking after her, I mean she is 50% dad and me… I don’t know I guess it is just a new concept to get my head around. What is even more crazy is that the others were all at nursery by this age and I felt ok with this? My mind is just going crazy and I feel horrendous even thinking these mixed emotions. I really hope they are normal feelings. Although I have to get into my head that actually she has just as active days and some of the days are the same as when with me and some are different but just as good.

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Dad sent me this picture on my first shift, BBG was exhausted and fell asleep during her sensory and physiotherapy session

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Dad took BBG on a shopping trip to B&Q too.

One good thing about part time is that I can still do some baby classes. So I did a late shift on Thursday which meant I could go to Baby Sensory Class. Last week it was all about water and under the sea. BBG loved being in the paddling pool with her friends. This week Dad is going to be taking her and I wonder what he will think of it, hopefully he will enjoy it.

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This is BBG in the baby sensory paddling pool, she was leaning against the side and so only a little support compared to usual. This picture shows the way her back is curved. The physiotherapist isn’t sure if it is structural or the way she is developing but it has been diagnosed by the consultant as scoliosis so we will see what the future holds as she grows more.

Last week we also had a phone call from Great Ormund street as BBG’s Neurology consultant wanted to see her this week, we weren’t expecting this appointment for a couple of months. As it was on my 4th shift that they wanted to see her we asked to have a different appointment and so are awaiting a new appointment date. We aren’t sure what the appointment is for. We are hoping that the results have all come in and they are all negative and so they want to discuss the next steps but it could be the other way and that a test has come up positive and they need to discuss this with us. We just aren’t sure and so we are just trying not to worry. This of course is easier said than done and although I feel calm I know I am not. My body is responding to me pushing everything to the back of my brain, my hair has started to fall out and my sleep is now awful. Hopefully we get an  appointment sooner rather than later. I guess deep down I just want a condition to be diagnosed now so we know what we are dealing with. A diagnosis may give us an indication of how to stop her episodes or can at least give us an outlook into what the future holds. She still doesn’t eat solids bigger than puree and has just started to do weird things with her chest muscles, so when she laughs she can’t breathe properly, when she exercises for too long again the chest muscles don’t work properly. We just want to know if this is going to get worse or whether it will be fine as at the moment I am scared of letting my girl laugh. It is an awful feeling to have. I guess I am a little bit of a contradictory with BBG, I want the test results to come back with something so we know whats wrong but having a diagnosis is scary and very real…. It is such a strange place  to be in.

Having some sensory fibre optic time. She only lasted 5 minutes before getting far too tired and crashing out.

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No matter whether it is a nap or a deep night time sleep 2 things will happen. 1 – BBG will not move from where you put her down. She falls asleep in one place and wakes up in the same place, it is rather handy when it is 3am and she decides to wake up! 2 – when you walk into her room this beam will always meet you it is amazing to see.

As for MO he has been really struggling this week. I guess it is because our routines have slightly changed, he is again like a spring wound up everything we do at the moment is to keep him calm, keep him from lashing out. He still is incredible to listen to and watch as he works things out however it is the ticking time bomb risk. He has spent so much time in his dark den with his fibre optic lights. He will either go upstairs and tuck himself right away under duvets and put his favourite tv show on or he will go in to his dark den. It is lovely to realise that he has calm down areas and both work. The lights and darkness work a lot quicker though, he does also have a projector and this he will watch for hours just watching the oil projector picture move around, it is so relaxing and it really helps to chill him out. Before we had this equipment we would have had violent lashings out a lot however now he  rarely violently lashes out which is just amazing. We knew they were good but to see them in action just confirms we did the right thing. We will forever be thankful to both Wetogethr (https://www.facebook.com/wetogethr.org/) and for everyone who has donated to our sensory equipment. Everything is used for both children and now we only have the equipment that is needed for BBG which is more physiotherapy based rather than sensory based but again just so thankful for any contributions (as of writing we only have £850 left before we reach our total and can get everything needed which is fantastic and only possible due to you guys https://www.gofundme.com/equipment-for-my-children).

MO with his projector and fibre optics.

In the bedtime hour MO and BG are allowed to calm down doing various activities, this week MO has chosen to do his educational books. He seems to be able to concentrate on doing these activities and really gains a sense of calmness concentrating on writing letters or doing sums. It is amazing what he can do by himself just chilling out. He also has kinetic sand and over the weekend he spent over 3 hours in one sitting just moulding and building. His sense of creativity is such a blessing and loves to keep making new things.

 

Yesterday we had a family support worker come over and it was so lovely to be able to openly speak to a specialist about how we cope with everything, some days not so well, in fact awfully and some days being on top of everything. Hearing that it is normal was amazing. Hearing that we are not alone is such a confidence builder. We worry so much about SB and BG and to hear about different clubs and activities and help that there is out there for BG (SB when he starts school in September) is just amazing. knowing that soon we will have the information to go and put them into clubs with children in similar situations is fantastic news. I really hope this helps as BG is really struggling. We have gradually been telling them more about BBG and letting them know that actually we don’t know if she will crawl or walk but we are hopeful. We can’t say that she will walk, MO remembers things you said from 4 years ago and we don’t want to get his hopes up and so these clubs will be extremely helpful for BG to let her unwind in a safe environment. We were also told that it sounds like MO has a sensory processing disorder however getting this diagnosed on the NHS generally doesn’t happen, the support worker is sending us through information on places to have him tested. If he is tested positive then the report actually gives a lot of help and suggestions apparently. We know it will cost a few hundred pound so we aren’t sure whether we will get him diagnosed but it is something we will look at. It is just good that we are now getting the help we and the kids desperately need.

As for SB it is his birthday today and he has been incredibly happy the whole day it has been wonderful to watch him have fun. As it is Wednesday he doesn’t go to playgroup so Dad took him to Smyths toy store while I was at work and brought him a pushchair for his doll. As for this doll he requested it on Monday, but not any old doll… no he wanted a boy one with a willy… one desperate hour search on line for a doll that can be delivered in time and finally had one delivered yesterday and he loves him. We are more than happy for him to play with dolls. In fact while he was playing dolls he was fixing the garden shed with his new tools so he can be a stay at home daddy just like his real life Dad. I have read a few articles recently about gender and toys and just think my kids play with what they want, BG never wanted dolls and preferred spiderman when she was younger and SB likes dolls… I am happy either way and can’t believe in this day and age people have a problem with that. My 4 year old boy has 4 dolls and a pink pushchair and I love the fact he does.

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Anyway I better go and spend some time with Dad as haven’t really seen him today. Speak to you all next week.

 

 

 

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