To say this has been an emotional rollercoaster is a massive understatement!!  However we must apologise for not updating the blog as regularly as we would have liked, however in the bubble world that we live in, called ‘fox ward’, everything changes so quickly that we just haven’t had the time.  Let me try & break down what’s happened in the last 3 weeks for you...........

Ok so a week after the last blog, Anabelle had an allergic reaction to  Ambusol, literally in 10 mins her whole face had swollen & went bright red, poor little might could only just open her eyes – she really did look like she had been in a car crash. The doctors gave her piriton which took some of the swelling away.  A couple of days later she was having high temperatures (over 38), as well as needing oxygen constantly, so the decision was made for her to undergo a CT scan on her lungs as this would determine if she had an infection or if it was graft verse host.  Due her not being well we were both very apprehensive with her going under general anaesthetic, however we pushed on as we needed to know what was wrong so the team could treat her.  That evening however, her high temperatures escalated to fevers (over 40), her body was starting to shut down, whereby her hands & feet went freezing and she would be shaking as if she was cold. Along with all this going on we also got the results from the CT scan which showed that Anabelle had a chest infection & there appeared to be a section of collapsed lung. The doctors & nurses were constantly in our room that night, but they did say that Anabelle was on every antibiotic & anti fungal medication possible so it was just now down to Anabelle. If she got worse, we would be in PICU (Paediatric intensive care unit).  48 hours later and there was still no improvement. She was spiking through the paracetamol which had held the temperature before. The decision was made to put Anabelle on steroids to try to combat this.  It worked – within 6 hr she had gone from 40.9 to too cold to read on the temperature dot thermometer!! 3 days later & her oxygen stats where back where they should be – no more oxygen required & temperature returned to normal.

However the good news in this time is that Anabelle's neutrophils had risen so she wasn’t neuatropinic & could help fight the infection.  Another chest x-ray has been done & her lungs are all as they were on the last blog – panic over.

Day 33 - 5^th September we got the great news that we had been waiting for....... Anabelle is 100% ENGRAFTED!!!  And we maybe home in 2-3Weeks!!!

Day 34 – Anabelle tried her first food in 45 days as she has been nil by mouth due to having a cord donor.  I really thought this would be a struggle but seems to be loving food, even though we can only feed her bland, bland, bland food – no dairy & only introduce one new food a day.

Day 35 – Anabelle has developed a mild hernia & is very unsettled.  She has cried a lot, which is unlike her & will only stop when we are standing up holding her. She also has high blood pressure – god it feels like we take one step forward, one step back!!

Day 37 – Anabelle has not stopped crying now for days & we just don’t know why  - however the only time she has been like this was due to the cyclosporine so  her levels will be checked again as this can cause bad headaches, she has also stopped codeine & is back on morphine (orally) .  Fingers crossed we get out happy baby girl back & some much needed sleep

Day 38 – Its official we are in ‘Yellows’, this is a step closer to going home – no more having to wear plastic aprons in the rooms & Anabelle can now go out of this goldfish bowl & into the corridor!! By Wednesday we hope she can outside in the pram, this is all dependant on her high blood pressure.

Today is day 39 & so far we haven’t found anything that is upsetting her stomach – hooray.  Her milk is given via a pump over night & this is now at 30ml an hour, which increases 5ml every night until she gets to 40 ml, she will still be on this when we go home. Her neutrophils are 2.07

Anabelle has now had 5 blood transfusions & 8 Platelet transfusions!! She has also stopped ERT as her body is now creating the enzyme that her body didn’t produce before.

Throughout this process her general development has been pretty good. She has gained new skills such as unscrewing caps and being able to place small objects into bottles. She is showing aptitude for meticulous play and music. The play therapist and Occupational Therapist visit regularly to help stimulate her mind and boost her development.