Sleep Study

We spent Saturday night at the hospital as they wanted to conduct a sleep study on Frankie while she didn't have her cast on for her scoliosis. She was none too impressed about going back to the hospital but was pleased that there were no needles involved this time. Sods law though, she had the most peaceful night sleep that she has ever had!

Getting prepared to sleep.

The next morning when we left the hospital we decided to treat ourselves by going to look at the Christmas Window in the department store Fenwicks. A little early for Christmas things I know, but it is almost December!

Atelectasis...

... a partial collapse of the lung. As explained in my first post this has been the latest thing that Frankie has had to contend with. She was admitted to hospital and had IV antibiotics and physiotherapy and it has worked wonders! I must say though getting her cast cracked open with the plaster saw remains very distressing for her and I am always shocked at how skinny she is out of her cast

On arrival... sad face :(

Doing physio...blowing bubbles as she couldn't tolerate the cough assist machine.

What a difference!!!!

At the cinema in the hospital watching  Hotel Transylvania...we loved it. It was the first 3D film that we had seen too!

Now we have to wait two weeks for the lung to remain inflated before they will do the cast again...fingers crossed!

.

The first and second scoliosis cast

The scoliosis casts are put on under a general anaesthetic in order that they can be done using traction...I think the patient gets pulled round a fair amount in the process. The first time Frankie had this procedure she needed her lungs suctioning while she was under anaesthetic.

This cast was put on in June and only lasted about 6 weeks before she needed a new one.

Even Sniffy got a cast put on that day.

We customised the second cast with some bandages...a much happier little girl! Frankie had this one on for about 3 months and it was cracked open a little earlier than it would have been due to her having a collapsed lung.

I have decided to write this blog as a diary about my daughter Francesca (Frankie) and her journey through life with the condition neurofibromatosis type 1 (NF1). I have this condition myself and when having children there is a 50% chance of passing it on to your children. I have been quite mildly affected by NF1 and it seems as though the condition is going to affect her more. The main problem for Frankie so far is that NF1 has caused her to develop scoliosis (curvature of the spine) which will probably need major surgery to correct at some point in her childhood. Apparently correcting scoliosis in NF patients is not as simple as correcting scoliosis without NF involved so that's a bridge we'll cross when the time comes.

Frankie has just been in hospital having had a  partially collapsed lung, the jury is out as to whether the scoliosis caused this. The respiratory doctors think it possibly has and the orthopaedic doctors think more likely not. My own take is that if it happens again then possibly the scoliosis is to blame. Fingers crossed it doesn't!