GOSH appointment and feeling bleugh

So this week we went to Great Ormund Street. I was a bunch of nerves mainly because we weren’t expecting to go up until the late spring/summer as per my last blog post. I managed to sleep like a baby on Sunday night, not sure how but I did.

Monday was horrendous, we got there just before 9am and left around 5.30. In all that time the longest time we were left alone was 45 minutes. It was a tiring day of constant medical people coming in, watching me feed BBG, prodding her, and pulling her about. BBG was so good through out all of it. Even the most horrendous test although she did cry through it she did so well.

On the lunch break we decided to get BBG a little giraffe. She LOVES giraffes and always will tire herself out more in our daily physiotherapy if we  use her giraffe toys. I am thinking of looking into Colchester zoo and adopting one of the giraffes for her but think I need to look into this more and how much it actually costs to get a plaque… but that’s a different story.

After lunch we had to redo the horrendous test and this time the needles were put between her temple and her eye, it was awful to watch and I felt like an awful mum holding her while she obviously was in pain.

 

On the outside this week I have appeared strong, but deep down I have struggled. I have struggled as the hospital isn’t sure what is wrong with my baby and will probably do more invasive tests before they even know what is causing all her problems. We also know they are thinking it is genetic and this has been eating up at me. I gave my baby girl this condition. It doesn’t matter how many people say no you didn’t if it is genetics they can’t say that anymore as it is me. I made her not be able to do things, not be able to hold herself up properly, and her arms and legs not being strong. I will never forgive myself for this fact, that her life won’t be as easy as her siblings as something in my DNA is mucked up. The worrying thoughts are flickering into my mind again as I do the washing etc, but thankfully I am in a good enough place to push them away or think myself out of them. Does it worry me that I won’t be able to do this one day, of course, but for now I carry on and whack a smile on my face.

As BG isn’t coping too well with everything my mum and I took her to see Mama Mia at the Novello Theatre in London. This was a fantastic day! We started by getting some lunch and then had a little wander and found Somerset house. As we had time to spare we decided to go in and have a drink. BG loved this and thought the place was fantastic and so grand! In fact she would love to go back so I will have to look for exhibitions there that BG will love! She is a budding fashion designer (at the grand old age of 7) so maybe a fashion inspired exhibition may happen that will interest her! As for the show, BG was drawn in like she is the film! Thankfully all the adult jokes went right over her head and she enjoyed every bit of the show! She loved the set and how it changed from being outdoors to indoors just by turning it around, it was fantastic to see her face and now I understand why my grandma loved taking me to the theatre when I was younger it really is magical. She loved the experience and really wants to see the Lion King which was in the theatre next door so maybe I will try and get tickets for this one day.

MO this week obviously hasn’t had the best week, we have had a lot of routine change. However, we are one step closer to improving this as we have a SENCO meeting at school for him next week and this will hopefully mean that his additional needs get met at school. It broke my heart as the routine change this week got to much for him and he came home in a ball not wanting to talk to anyone and just crying. It broke my heart seeing his usual cheeky smile vanish as it all got on top of him and the unsocial behaviours were really accentuated. It breaks my heart that the kids do not understand that he is different and some of the things he does he can not help, but it also breaks my heart that he can’t stop doing these things. It makes me look to the future and think about his future job, his future family. Will he cope with adult life? I just don’t know and then this usual feeling of pain enters my body, the crushing sensation that I have caused my boy to have a difficult life, that I can’t help him, that I am the reason he can’t deal with situations. I hate this fact, mothers are meant to help their children to get through the difficult things in life and here I am not even able to do that to a 5 year old, whose only real worry is who is going to play with him that day.

Due to everything going on our routine really has taken a beating, including not going to BBGs baby sensory classes the last couple of weeks! I feel terrible about it. We have had so much happening that by Thursday morning if we aren’t rushing to another appointment it could be the only day I get to breathe. BBG is going through so much and these classes she loves however I am terrified of going and seeing the other 7 month olds doing things, seeing everyones babies progressing, as although BBG is progressing it is extremely slowly. I know it sounds stupid but I overthink it all and it then just gets on top of me and I go into this little ball and cry when I get home. Cry that she isn’t doing what she is meant to be doing. I know if I go it will actually do a world of good for me let alone BBG plus she actually loves it, so this week I am going we have nothing going on Thursday so I am going to go sensory class and let BBG enjoy herself 🙂 which reminds me I must pay for next term! I do highly recommend baby sensory, I have done it with all 4 kiddies and even with BBG not doing much, she really does move in these classes and it is amazing how the sensory activities stimulate her body in ways even physiotherapy doesn’t do! It is one class I am so glad I stumbled across 7 years ago at a baby show.
We did get all the kids one of those furry worm things with the fish wire on that I used to play with back in the 90s! MO and SB love them. They have taken them everywhere, unfortunately MO’s broke and he was heart broken as he had become attached to it (unfortunately MO gets attached to things VERY quickly) so a quick Amazon search and a whole load of these things will arrive soon to hopefully prevent further melt downs. Thank you AMAZON!!

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This week has basically been real hard but today I draw on the positives,

  1. Some awful conditions have been ruled out for BBG
  2. BG had her first theatre experience and loved it
  3. Looking over at MO and BG playing and laughing – just how can that not be positive these 2 will always have each other
  4. MO and SB both found a toy they love and don’t want to break
  5. the below picture, this picture isn’t the best, it isn’t the worst but the peace BBG has on her face, the peace she has and the calmness she has just makes me think we can do it.

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Its a busy next couple of weeks but we will get through and this blog is one of the things that helps me through and so I say thank you to all my readers, regular and newbies who read and message me positive experiences, thoughts and quotes. All are read and mean the world. The black cloud maybe starting to linger over me again but I will get through this storm.

 

 

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3 Comments Add yours

  1. Cynthia says:

    Oh Bex you bring tears to my eyes stay strong xxx

    Like

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