Today was stressful, overwhelming and draining
We were aware that we had 2 back to back appointments in the local hospital with eye doctors to check Leah's sight and overall eye health
What we did not know was that we were expected at children ward for bloods for further genetic testing
On the way to hospital I have received a phone call that the blood sample collected from Leah last year for genetic was now insufficient to do te test and we need to come so they can draw some more bloods
I could feel my stress levels and blood pressure raising as I knew that while a blood test is ok for me when it comes to them little children they are often forced , restrained to have their blood taken and that it traumatise them for life.
I felt stressed and sick to my stomach.
Leah was unhappy straight away after we parked at the hospital car park. The tears were flowing down her little face and my heart was breaking as there were much more tears to come.
We only managed one of the two eye appointments as she would just not cooperate with the consultant and he was not patient enough to keep trying.
At least we know her eyesight is good but condition of her eyes were not assessed.
Than we made our way to children ward for the blood tests. This broke me and broke my heart. You realise how much it hurt to see your child in pain and being forced to do the things they do not want to do. I could not hold back and the tears were now flowing down my face. I would do everything I could not to see my children suffer, being in pain or being unhappy.
Now we are facing further 12 weeks of wait or rather 12 weeks of hell for results that hopefully give us some answers on the reasons behind the delay in Leah's development.
During some research it became apparent that Global developmental delay and intellectual disability (GDD/ID) affect up to 3% of children <5 years old and is defined as a delay in ≥2 developmental domains, including gross and fine motor, speech/language, cognition, social/personal, and activities of daily living.
About 53 million children (<5 years) have developmental disabilities. Genetic factors are responsible for up to 40% of developmental disability cases.
An early diagnosis is key to improve the clinical outcome and prevent further complications but it is now nearly a year since all of this testing started and we still do not have our answers :(
Causes of developmental delay ( source medicover-genetics )
What are common developmental disorders?
Common developmental disorders include autism spectrum disorders, brain malformations, intellectual disability, and Rett syndrome.
The Rett syndrome has been excluded during the last tests. However we are still unsure what the future holds :(
To say Thst I am stressed is an understatement. I feel anxious, worried, mentally and emotionally wrecked. However the fight for my children health and well-being continues
Love
Stella