Saturday, 4 June 2011

Is it the end of the unknown?? 
       Today we had our first appointment with a Clinical Speech therapist. My little angel had  one on one speech therapist working with her, then she had a group speech therapy but with no changes or progress. Today's speech therapist was different as she does not work with speech itself but with the physical part of it. This speech therapist looks mostly at feeding and how it all works inside during the process (swallowing or other upper aero-digestive functions such as infant feeding and aeromechanical events (evaluation of esophageal function is for the purpose of referral to medical professionals).
        When I was in the hospital and the Therapist, Candida her name, was telling me that there is a physical problem that my daughter has that was the cause of all her problems. Finally we got the answer and underlying cause. So I felt relief and was quite calm and ok with everything. But when I left the hospital and was going home I started to feel anger, frustration, feeling so many different things... to the point that I started to cry right there on the bus.
        Why? Because almost 3 years of sufferings my daughter went through, all her feeding problems, weight problems, severe speech and language delays, her constant chest infections that she was fed antibiotics every 3 weeks- all of it could have been prevented IF ONLY one of the many doctors, health visitors and other medical professionals we have been seen by over the years had listened to me and didn't dismissed one of the little weird thing Vicky had.  From after about two weeks after she was born I have noticed that when she was breastfeeding some of the milk was coming out of her nose. It didn't seem to bother her, she would continue suckling with the milk dripping out of her nose. I asked about it the doctors every time she was admitted to the hospital with bronchiolitis(spending up to 7 days on the oxygen), every time we saw a GP(quite a few different ones), Health Visitors,  paediatrician and many more. They all said that its ok just because it didn't seem to bother her, one doctor actually shoved his finger down her throat and said that all seems fine. But then after she grew up it did not stop, even after she was 12 months old and drinking water or juice from the straw standing upright she will have it drip out of her nose. And I got same response. So now at almost 3 years old, she still has sometimes food coming out of her nose when she sneezes and etc.. 
      So today after talking to Candida for about a half an hour and after she took all the history and other details, I have decided to mention it. And the shock on her face that Vika had this problem for sooo many years and nobody had ever thought of referring her to the clinical speech therapist at the first time it was noticed. She said that all the chest infections she had, the shadows on the lung x-ray done when she was under two and thought it could have been a TB(it wasn't),now it looks like it's scarring from food, it was the food getting in her lungs. Candida immediately called her receptionist and organised as an emergency and extra priority for a special x-ray which was done in an hour. And as every one knows in NHS it can take weeks for the appointments to come through. 
It was confirmed. Victoria has a physical problem, I can not describe exactly what, but Vicky is SAFE on BORDERLINE!  So if you take a borderline with life threatening and safe, Vicky is on the safe side of borderline. There are still precautions to take when eating. I asked what would have happened if it was dealt with from the beginning and the answer was that Vicky would have been fed through the tube in her stomach and then gradually trained to swallow properly without the risk of food getting into the lungs.  Vicky is VEEERY lucky to have spent 3 years of her life with this condition and learn on her own how to overcome it. Very lucky because food and liquids constantly getting in the lungs potentially is life threatening. 
 I was so relieved and shocked from what just happened and what was happening... I asked a few questions more and we left. But once we left and got on the bus I started to process, I started to have more and more questions, I felt so many things like anger, frustration, relieve and started to cry. Pathetic?...

  So now we have to wait what will happen next as the therapist now have to send the report to all specialists working with Vicky. Paediatrics, Neurologist, GP, Genetics, Speech and Language, Nutritionist, Health Visitor, Nursery and they all have to discuss what will be next step etc..
  But for now I am taking her on a 2.5 months holidays abroad with plenty swimming in the lakes and seas and lots of fresh fruits and veggies and the SUN :DD



   Wish you all to have a fantastic summer!