Tomorrow (January 17) Tobias & I are going to the hospital, once again. Tobias is going under full anesthesia & then he is having a MRI scan (second time), a spinal biopsy (second time) & also an ophthalmologist is checking out the nerves behind the eyes to see if they are working as they should.

I hate when Tobias is going under anesthesia, this is the third time & I always cry when I leave the room, after Tobias has fallen asleep. It is devastating to see my baby falling asleep like that. Hate everything about it, the way he screams his lungs out when the anesthetist is forcing the mask on him, seeing how he fights against the anesthesia & then all of the sudden he gets all slack & looks so peaceful at the same time, hate it!!! The last time he had a spinal biopsy, he got so sick for a whole week, he could not drink or eat anything, he had a fever, he cried all the time, threw up – so much that I had to take him to the hospital but they just sent us right home again, he became so weak – never seem like that before & am praying that I will never have to see him like that again.

My son is very skinny actually & should definitely not lose more weight.

He has no language & normally I just know how to read & understand him but when he is sick, it is so difficult & it makes me so sad because I am so afraid that I misinterpret him or am not aware enough of bad signs etc.


But we really need to get it over with because we need to find out if his body has gained any of the folinic acid that he has been taking for the last 4 months – I am so nervous & anxious to get the result, what if his body has gained ZERO of the pills? The doctors have been saying that if he has not gained any of it, they do not know what else to do!!!


My ex (Tobias’ dad) is even coming too & really I do not get why, not when he has said that he does not want to have his son home anymore – really wish he would just stay away since he is no support anyways.

My worst fear is that Tobias will not wake up again but know that God is with us but gosh, am so nervous. Hate hospitals, really. Hopefully the MRI scan will turn out just normal again even though doctors have warned me that there is a change that he is brain injured now because he had not been treated with folinic acid in a long time since the doctors did not know what was wrong with Tobias until 4 months ago. Am praying that he is just fine!!! But if we get any negative results, we just need to take it from there. Will be strong for my boy, he deserves a strong & powerful mom!!!

So if YOU are reading this, PLEASE pray for my little precious boy – THANK YOU!!!

About majasf

Single mom
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