Hospital visits

Well seems like a long time since Bethany has had lots hospital visits! And as normal they have all come together at once! At least we have had some good news and it hasn't all been depressing!

Beautiful pic to make you smile

Ears - Bethany always fails the hearing test as she has glue ears! Then they ask me can she sit unaided to which I reply every time NO oh ok! well we can't really do the test.  They decided to test her shock reflex dropping a hard ball in a wooden box but Bethany was concentrating on sitting on mummy and trying to bounce that she didn't even blink typical she jumps the following day when mummy sneezes next to her! We've tried hearing aids didn't make much difference and were always falling out bit useless really. Said no to gromits as stew my husband had one and has had 1 ear infection after another! So we are now trying a Baha band (http://products.cochlearamericas.com/support/baha/baha-for-children) if the doesn't do anything then hoping they will discharge us!

Does this make me look like i have special needs!

Eyes - We went to see the eye doctor recently. We have been seeing him yearly since Bethany was born. She has Cortical Visual problems and optic atrophy  and was registered as severely sight impaired/blind last year. Which means half priced TV license now! Think its very funny that my 3 year is the TV license holder! Well appointment went well Bethany will track some objects and lights. The consultant has decided not to see us again as because Bethany's head hasn't grown since she was 3 months old nothing much has changed with her eye sight. so i guess that is good news and its one less appointment a year!

Kidneys -  Bethany's genetic doctor who we saw in Aug decided that Bethany should be sent for a kidney scan as some children with her deletion have problems with their kidneys. So off we went to the hospital! We followed the instructions on the letter to where we should go and when we turned up (good job I was early) I was told that I was in the wrong place so I pointed to my letter and instructions and told them this is where I was told to go. So off I went to find correct department for Bethany's scan. Our appointment was for 10.30 and I was there for 10.10! I don't think this has ever happened before but we were seen earlier than our appointment time! normally all Bethany's appointments run an hour late! Poor Bethany hated having the scan even though the jelly was warm and we had pretty lights and music to help. The doctor made me laugh when she asked if Bethany would lie on her front so she could scan the kidneys from the back I told her no! By this time Bethany was very unhappy and shouting and crying at us! (you can;t blame her she has had so many people prod and poke her and stick needles in her I think I would scream and cry too) So she sat on me for rest of scan she redder and redder and very blotchy.  I asked if everything was OK to which she said ill go talk to the consultant and he may want to do some more scanning! Well that always worry s me! Anyway she came back and told me everything looked fine what a relief!

Neurology Paediatric consultant - This appointment can sometimes be depressing! Good news first is that Bethany has finally gained some weight and grown in length yea but as normal her head hasn't grown since she was 3 months old! New drug (Azithromycin) added to daily cocktail we already give her! It's an antibiotic that she takes every other day thru winter to help with chest infections and hopefully keep her out of hosp fingers crossed. We discussed Bethany getting referred to Rainbows hospice http://www.rainbows.co.uk/ for  some respite. I have sent an application in and now just have to sit back and wait for them to contact us! Bethany's doctor doesn't think she will live beyond her teenage years. Prob explains why she is acting like a teenager now! by bot getting up in the morning and sleeping in very funny.


Heart - Bethany genetic doctor wanted her to also go for a heart scan to check her heart was ok! So after fighting thru rush hour traffic we finally made it to the hospital! we then had to go into south block! Bethany always has app n stays in east block so we got a little lost finding cardiology ward but eventually found it! We then found out they only have 1! Paediatric heart scan machine and it was currently in neo nates! Really a huge university hospital and it only has one machine was children! Anyway a little after our app time we getting taken thru for the scan. Bethany was a superstar and didn't complain. The best news everything looked fine and was normal.