So today we have had a meeting with community & most of our hospital team to plan what is next for Jax.
The facts are that 18 months as an inpatient and we are no further forward with Jackson (in some cases he is worse off) than he was on admission.
The amazing Great Ormond Street confirmed what we already knew, that is that Jackson can’t feed. (the official report isn’t back yet but that wont affect anything).
We don’t know Jacksons underlying condition we may never know. one day they may find a gene linked to his condition or they might not.
What the future holds for Jax we do not know, what we do know is we have a fantastic community team to support him.
Our home TPN equipment has been ordered and I should start my training end of this month. Dad will train next month then home to enjoy our baby xx
We will continue to share his story and hope for answers. we rely on all your support to spread the word out there so someone can help. please keep sharing xxx