Someone leave the light on!

Many things have happened since the last post, many good, many not so good. The biggest thing was the visit from the physio just yesterday and imagine my relief when she confirmed that my little girl was focusing and responding to her. Ava was also playing with her favourite toy by batting out to it. Due to the medicines that Ava is on it is likely that her muscles are very relaxed and so harder for her to control so I will be placing her on her side to play as this is easier for her, she will be getting more tummy time to develop her neck muscles, as at the moment the task of holding her head on her own is very big for her - we will be getting a special chair to assist with this skill. Ava will also have some sessions in the sensory room at Chester-le-Street Hospital. Her development will be slower than others as she has been so poorly, and still is. I have to ignore normal milestones as ava has her own timetable - we don't know what it is yet!!
Her head growth still remains very low and her weight is a continual worry. She put on 14oz over 2 weeks then this week lost 3oz. It is not surprising though as we had a very bad weekend as Ava was fitting alot more and fed really badly - we were lucky to get 6oz in her on Sunday. We have responded by uping her meds but other than calming down her fits, it hasn't stopped them so it looks like we will be starting some new meds very soon. Ava had her 2nd set of immunisations yesterday so only time will tell if this is going to set her back like the 1st set did.
I have started cognitive therapy and counselling now - both of which have been very helpful for me to help cope with this difficult time. I spend more quality time with both the girls individually but have to work on getting me time - very low down my priorities but a big neccessity I am told. I hope Ava continues to make progress for the next installment and thank you for your continued support.

The Rollercoaster

This has been a difficult week with loads of ups and downs. We were struggling at the weekend - how anyone comes to terms with this type of news I do not know. Lots of people have messaged and texted and rang. It is these friends and family who have helped to get us this far and I want to say thank you from the bottom of my heart. I know it sounds daft but just that message of hope or support or the call round for a cuppa helps to make this whole ordeal easier to deal with and makes it seem less scary.

Ava has had a difficult week. She has caught the chicken pox on top of a very bad cold and cough. We had to cancel her 2nd immunisations until she is better. Unfortunately she has been having stronger and more frequent seizures, especially today (Fri 4th March). I called our consultant and spoke to him about Avas condition and the fact that she is off her feeds. It is so reassuring knowing we have him by our side.If she remains off her feeds we may have to have a feeding tube fitted. Her medicine has increased to combat the seizures, fingers crossed it works.

Early in the week we had a specialist health visitor and our epilepsy nurse visit us. As a result we have been referred to portage, physio and a dietitian. It was such a relief to know that we don't have to do this on our own. On an even brighter note, we had reduced Avas meds a little and she was a lot more alert and focused on the nurse, laughing and giggling and concentrating on her face - a break through which we are hoping means its her meds not her brain making her unfocused. Even better, Ava has managed to smile, giggle, roll over and hold her hands together this week - despite her extra illnesses. I just think if she can do it so can we.