Breaking out Any Day Now

Brady has been officially off continuous feeds since Monday.It was a long journey to get him to where he needs to be. It took 2 months for him to reach goal with feeds. He did bolus with the syringe for the first two days. His doctor is hesitant that he might have another set back so he is getting bolus over an hour.It's not what I want but at least I finally get to hold him.It had been almost three months of not holding my baby.

He is also very,very close to getting discharged.I'm happy and I'm nervous.We have been here for so long.I have not left the hospital at all during his time in the hospital.I have no idea what I'm going to do once I don't have a call button,no one to change him,give him meds,etc.It's all going to be on me.

He has his first set of equipment coming tomorrow.He got his helmet today.Because of his microcephaly,I think the helmet is too big.Hopefully he can grow into it.Tomorrow he gets hi suction machine,oxygen,and apnea.It's going to be different going home with all the things we never used.He came into the hospital on 1 medicine.He's leaving on 8.I'm just glad that he's getting better.He had a very hard few weeks but he has bounced back.He is a real fighter.

Making Progress

This morning Brady did something he hasn't done in almost 3 months.They let him take formula by mouth and he actually enjoyed it.It was a struggle the first few times.We are using a soft feeder instead of his haberman bottle.He wasn't so sure about the feeder.I soaked his nuk brush in formula and then he liked it a little better.He drank 10 cc.They say that is what he gets in an half and hour so that's really good.I've been giddy all day.I am really proud of him.

He also got approved for his Kayser Batten bed.I'm not sure how long it takes for him to get.The hospital is also working on an plan for when he leaves.He will go home with a monitor,oxygen,and a suction machine.They also are going to train me in CPR.He is doing really good.Hopefully in another 2-3 weeks we can finally be home.

The Dreaded Meeting

Today I had a conference with his doctors.It was genetics,neurology,speech,OT,PT,nurses, pediatrician, social worker,and a lot of other people.It was like a bad dream.They set me down and explained that Brady does officially have CDG.They are not exactly sure what type yet.They also said that his EEG was extremely abnormal.He was diagnosed with Lennox-Gaustat syndrome.They are adding on Banzel.They don't want to add on too many medicines since his seizures will probably never go away but they are going to give it a try.The hardest part was when they told me I need to make some kind of plan if he was to come into the hospital.The brain controls everything and since his brain is so abnormal even a common cold could have terrible consequences.I'm not giving up on my baby though.They said usually kids with all he has don't make it past a few months and almost 2 years later he is still fighting.I love this little boy with all my heart  and I'm going to do my best to prove everyone wrong.They said he has about 3 weeks left in the hospital until he can go home.