Today was rather busy. I was very nervous as we had a GOSH appointment and I am always nervous for the whole week before a hospital visit. Yesterday BBG went into the paddling pool and didn’t move, in fact she has only splashed once in her life. SB came to the rescue and showed her how to splash. It was rather cute and reminded me yet again, not to be sad about what she can’t do but be happy about what she can do. Also, she can have a ‘normal’ life just with adaptations and help and this was a perfect example, she can’t splash in the pool but she can still use the pool.
This then spurred me on this morning and I went to my local baby sensory class. See I had been forgetting that BBG needed the lessons and that actually, yes the babies are all sitting independently, yes some are trying to stand but actually they are all developing differently and since going last time BBG has come on leaps and bounds. So I dusted myself off and went to the class and BBG surprised me. I was filming her during a song and she shook her musical instrument! She is 10 months old and has finally held an instrument and shook them, whether she did it on purpose or not I am not sure and I don’t care! she shook that instrument and I am one proud mummy for her doing that. Click here to see the video.
I then rushed home and sorted out the hospital bag. See usually I just take a muslin, a couple of nappies and some wet wipes when going out. I always panic when I know we are going to somewhere like the hospital where we get there on public transport. I also hate this time of year where it can be 30degrees in the morning and 12degrees in the afternoon so I never know what to pack, a coat, a jumper or a blanket?!?! I decided to just take our BundleBean it fits into its own bag and is quick to put on and off the pushchair so no need to worry plus her favourite toys.
Just slightly excited to be on a train
Thankfully the weather held out and we got off the train, after checking the time we realised we had 25 minutes to do a 43 minute walk to the hospital! We decided to try and power walk the whole way hopefully meaning we got there on our appointment time… Well with 10 minutes to go and only half way to the hospital we decided we should probably bite the bullet and get a taxi. Can I just say London Taxis are so much easier to get then our local ones we had about 5 to choose from.
By now I was extremely worried, my nerves had sky rocketed. I was on the phone desperately trying to get through to the ward to say we were on our way! Thankfully we got there and we were only 5 minutes late (I detest being late for appointments, it physically makes me feel sick).
We had just sat down, checked our phones and we were called into a little room, this was just where the nurses weigh and measure the children but still we went in extremely fast. We then boycotted the waiting room and went straight into to the consultants room. Our consultant is so lovely!
Today we were there mainly for BBGs breathing and eating. We weren’t really sure what today entailed, whether it would be tests or just talking and a general review.
Our consultant listened to what we were saying and it sounds like BBGs throat closes up when she is laughing or talking, that her nerves do not quite tally up and when she is concentrating hard on something her body forgets to work some of the muscles. The consultant then quickly got on the phone to see if a member of the Speech and Language Therapy team (SALT) could come down and see BBG today, unfortunately they couldn’t but we will see them in July when we go back up. Our consultant thinks this maybe the case when it comes to eating as well. That her throat muscles do not work. It was a relief to hear from a medical professional that we weren’t going crazy.
She then did a full body check and confirmed the shape of BBGs head was different, and that she wanted a MRI. However to get the MRI she needs the go ahead from the SALT team, to see if it safe to sedate BBG or whether it would be safer to do it under general… We aren’t sure which one we would prefer but we do know this is something extremely important.
All BBGs abnormalities were reconfirmed today and the new ones noted down. The consultant then advised us the words that we really didn’t want to hear. BBG could just be BBG and it is looking like we will never know what is wrong with her. My mind just whirled back to my emotions and then back to trying to keep strong about it all. The consultant obviously saw our faces and just added the words we needed to hear ‘we will do everything we can to help BBG’ my fears were gone for the rest of the afternoon.
We will have to see what happens in the next couple of months but it does look like they are thinking of a feeding tube if she hasn’t improved her eating by July. We were also reminded that they really don’t know what is wrong as we were told next time she stops breathing don’t hesitate call 999 as her muscles may not start again for a long time. That hit home that they are worried about BBG and her chest.
Who knows what’s going to happen tomorrow, next month or even in 10 years time but we know that the best drs are looking out for BBG and we are there fighting her corner as she can’t.