After what appeared to be a relatively good period where Lauren had avoided hospital we began to again develop sudden respiratory infections. Much to our horror there were a number of occasions when formula came up when Lauren was suctioned. This meant that Lauren was refluxing formula through her Fundoplication. After numerous tests were performed including a barium meal, milk scan, gastric emptying study, 24 hour pH probe and finally a Gastroscopy it was proven convincingly that the Fundoplication was no longer functioning. So two years down the track after the first Fundo the procedure is repeated but this time it had to be done by open surgery technique. We were hoping that this would solve the problem of gastric refluxing leading to aspiration pneumonia.

Within a couple of months we were back in hospital with another respiratory infection and a month later we were back again. But this admission was different.  We were strongly advised by the doctors that Lauren needed to be intubated and connected to a ventilator. We reluctantly agreed to this because appearance wise she didnt seem to be in too much distress. We were very relieved when she responded well to being intubated and was successfully extubated a few hours later. Her recovery in ICU was very slow this time, not at all like previous admissions. She bounced up and down between ICU and the ward a number of times, there was definitely something not quite right. After more incidents of formula being suctioned up it was apparent that Laurens muscle spasms were so strong that they were responsible for her stomach contents being forced up through the fundoplication. We decided to change her feeding routine to take pressure off her stomach. Bolus feeds were replaced with  a combination of  smaller bolus feeds and pump feeding over a longer period of time. She appeared alot happier generally with lots of smiles and really good reports from school about how much she is enjoying the activities. We have ceased using the herbal supplements for almost a year now and Lauren doesn't appear to be any worse off. The fact that we have been able to avoid hospital lately suggests that the change in feeding routine has been significant to her general health and well being.          

The annual review of her vision by her Ophthalmologist in December, 2002 revealed a significant change. She was found to be short sighted and was subsequently prescribed glasses to correct the problem. She doesn't seem to mind them and there have been many comments from people saying how much more alert she appears to be. A similar review of her hearing in April, 2003 has resulted in hearing aids being fitted again to try and improve her ability to pick up and respond to sounds. We are no longer using the hearing aids.

The main health issue that we have been dealing with has been recurring respiratory infections. This was exascerbated in 2004 when a series of overnight sleep studies identified issues with the quality of  Lauren's sleep and breathing at night. She was retaining carbon dioxide and experiencing obstructive sleep apneos, the quality of her sleep was really poor. Surgical intervention for adenoid and tonsil removal was ruled out because of the risks involved so nocturnal supplemental oxygen support was introduced. Lauren seemed to benefit from the extra oxygen at night but after another sleep study it was decided to use BiPAP at night supplemented with oxygen during the day to assist the quality of her breathing. Soon after using humidified BiPAP at night Lauren was hit with a series of severe respiratory infections and it was found that she had developed the bacterium pseudomonas in her lungs. This resulted in the need for even more intense medical intervention and support. Her oxygen dependency increased and there was a need to administer more antibiotics orally, intravenously and even nebulized to help suppress the pseudomonas. It was apparent after a few months that Lauren was working against the BiPAP and that it was probably doing her more harm than good, so we stopped using it at the beginning of 2006.

The last twelve months have seen Lauren doing really well health wise and she has been very happy. We were very surprised when she suddenly took ill with another respiratory infection. We weren't to know that this was the one she was not going to beat. After two and a half weeks in intensive care, when we all thought she was on the road to recovery, she crashed while having phsiotherapy and needed to be intubated for the third time during this admission. This was a very difficult intubation and it was apparent that she had enough, it was time to let her rest. We always felt that we would know when the time was right to let go and allow her to rest in peace. Lauren passed away quickly and peacefully in her mother's arms with me beside her when the ventilator was turned off. Eventually after many tears, hugs and kisses we said our final goodbyes and left Lauren lying ever so peacefully with her special Dolly beside her.

We are committed to ensuring that her life is happy and meaningful despite the pain and discomfort we know she experiences. Her irresistible smile is what you long to see and this has brought much pleasure to all those who know her. We will continue to try and obtain a formal diagnosis for Laurens condition, to fully substantiate if it has a genetic cause and let medical professionals know how important a diagnosis is to a family.