Anna seems to be improving in her communication and interaction and is on the way back to her former self, which is very heartening. There are needless to say good days and bad days!
She remains of course very, very weak and is currently unable to stand for any length of time, let alone take any steps. Additionally, she is very weak in her arms. All this stems from her SMA exacerbated by the drug regime she is on for the ALL.
The focus will therefore be to ensure that she takes load bearing weight on her muscles and stretches and reaches with her arms to maintain and build strength and movement through more intensive physiotherapy: she will have weekly alternate visits from West Lothian physiotherapist, Dawne and occupational therapist, Clare for the next few weeks, as well as Ann Marie and I giving her daily physio.
Last Friday, Anna had an appointment at A&A Studios, Edinburgh to investigate which wig would be suitable for her. Although she is holding onto her hair well, it is definately thinning and will at some point go entirely due to the chemotherapy. As it turns out the choice of wigs for a three and a half year old is very limited indeed but we identified the best one, which will be ordered as soon as they receive the prescription from RHSC.
Anna is currently on daily overnight feeds through her NG tube, as it has proved difficult to ensure that she takes enough liquid and food daily to maintain and increase her weight. She has in fact lost some weight since returning home. However, she is not taking well to these overnight feeds – she is throwing up 2 or 3 times a night – which defeats the purpose. Although she is only on 300ml per night at 30ml per hour (it should be up to 500ml by now), we will reduce this in an attempt to erradicate the sickness, plus discuss the situation with the dieticians at RHSC.
Today we had a brief visit to RHSC to get a new dressing on Anna’s NG tube as it had once again become detached from her cheek. On Tuesday coming, we have an appointment with Prof Bushby at the Newcastle Institute for Genetic Medicine. Subsequent to that visit and an exchange of information between Newcastle and RHSC, RHSC will decide on the details of the new regime which Anna will follow for the next block of her ALL treatment (daily chemotherapy given at home will continue but she will not have weekly intrathecal chemotherapy). This new regime will start on Wednesday when we have an appointment at RHSC.
anna's blog 
Oh Peter, Ann Marie, Nathan and little Anna… I do feel for you all so much. However, I feel important to say that you all seem to be handling the situation very admirably. I continue to send you buckets of strength and positivity. Its lovely to continue to see Anna’s beautiful smile in the updates. I know they will go a long way to get you through the hourly night feeds. Keep up the fantastic work family Penman…. Your all doing so so well xxx.
Hello to you all. So pleased to see the photo of Anna at home. You all must be shattered but her small steps of progress must mean so much. You know that there are so many cute hats around I’m sure that they will be so much more pleasing to her than a wig. Hope that the feeding improves, what a struggle for her. Thinking of you lots and just give us a shout if there is anything we can do, The Lamonts x
Hello everyone. Its great to see the progrss that Anna is making she is so very brave, and very lucky to have such a wonderful family. Warm thoughts xx