The results are in!

So yesterday was the big day for us, I had to keep calm until 3.10 in the afternoon, which was easier said then done. However laughing and talking with Dad about everything and anything other then the dreaded hospital helped. I don’t want the whole post to be about the results so decided to share a couple of positive thoughts about the other kiddies first.

MO has finally calmed down after 2 weeks of his routine being changed WOOO!!

MO can also now tell the time! He has known for a while what 8pm looks like on the clock as this is bed time, he can be bouncing off the walls at 7.59 and then look at the clock and it is 8pm and he is all of a sudden exhausted and asks if I can tuck him in. Yesterday he proudly said that it was 6.30, and took the next 45 minutes telling me how he realised that it was 6.30, how do I know that it took 45 minutes… he then told me it was 7.15 which is bedtime hour. I try hard to listen to MO when he is talking about something for such a long period of time, sometimes I tune out but I do try to listen as it is always about something he has a passion in and I don’t want to teach him his passion is wrong. I will always remember the day the midwife was round doing my check up after BBG was born and as she was leaving she asked MO what his favourite dinosaur was, safe to say she was late to her next appointment I am sure.

MO everyday also always has all his polo shirt buttons done up for school, he doesn’t like having any buttons undone, but he decided to go to school with one button undone the other day! I was shocked, safe to say it was only for the one day. He did tell us with all seriousness today that he isn’t allowed tattoos at school, his teacher had told him, I am glad the school has a no tattoo rule for their children especially as they are primary aged 🙂

BG is super excited that this week she is having 2 friends round, one on Thursday one on Friday and is marking the days off every meal time before they come. She has so much excitement but she is nervous, as MO sometimes gets too over excited, so we have prepared and MO will be busy the whole time and won’t spoil BG having time with her friends.

As for SB, he is so independent we could easily forget about him! Today before playgroup he was just playing with his batman and peppa pig toys. His sweet voice talking in all different ways depending on the toy is so cute! All I could hear was ‘Nooooo, Batman  please help!’and ‘Batman is here to save the day’. I could sit outside his room for hours listening to him play, the only thing about him being so independent is the fact that as soon as he realises you are listening or watching he stops and hides under his bed.

Now onto the hospital results. As we were waiting for the appointment we knew that we were either going to hear;

1- the genetics have come back and BBG has this, this is how we deal with it

or

2- the genetics have come back and BBG hasn’t got anything so we are going to do a couple more tests and keep up physio.

Now the genetics came back and said that BBG has no significant chromosome disorders so we can be so thankful for that.Then the consultant did his usual tests to see BBGs improvement. Now we have been so excited about stuff she has been getting up to however the consultant still noted lack or resistance and lack of reactions. BBG is still confusing the consultant as when she is on the floor she will kick her legs and try to reach for her toys, however get her more then 45 degrees upright, everything stops moving. BBG still has very weak core muscles which means she doesn’t even attempt to roll over, she doesn’t lift her arms more then 45 degrees and many more things that I didn’t even know were milestones until now. She also doesn’t swallow her spit, so it pools up in her mouth then comes out like a waterfall. Overall the consultant said that she has overall muscle development delay and hypotonia still.

She is now being referred to the bigger hospitals where they will do more specialised  testing. What we weren’t expecting was the fact that even though BBG doesn’t have any of the big conditions no one really knows what the future will be, whether BBG will fully catch up with other children, whether she will need assistance in walking, or whether she has another condition that will gradually waste her muscles away. We weren’t expecting that, we were thinking if she hasn’t got the main conditions she will just be slower at developing. It was a big shock.

Now that we have slept on it, BBG is still BBG. She will always be loved and we will always celebrate the smallest of physical things that we haven’t done with the other 3. I guess in a way it is like MO, we don’t celebrate the physical things he does, but we do celebrate when he achieves something amazing, like not going into a ball when in a crowd or even using a fork!

So the news yesterday wasn’t the best news, it wasn’t the worst news, it just wasn’t the news we wanted to hear. We will still muddle through and who says ‘normal’ isn’t our lives.

I better go as Dad is doing a full clean of the downstairs and he wants to move the sofa 🙂

 

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