Better Late than Never Update

Well the past 6 months have been filled with hospital stays.My life has been having doctors come in and out,getting blood work,EEG's,X-rays,etc.Brady has been in the hospital  3 times in the past 2 months just for vomiting alone.I am not getting any answers to the cause.They are wanting to do a gj tube but I'm not there yet.I just feel like it would be an easy fix but not stop the vomiting.I want to agree to it but I'm just not completely sure yet.They are scheduling one of his dreaded care conferences tomorrow to weigh my options.They don't  want him going home on TPN.That is not the way to go either.I just want to do the right thing but it is so hard when he can't talk and tell me what is wrong.

On a happier note though,he had his 2nd birthday Saturday.He was sick the whole time but it was just such a relief to get to the 2nd birthday.I worry everyday about him.It is so hard to have a child where you are constantly worrying about if he is going to make it.He has had so many close calls every time he gets sick it causes a panic because he goes down so fast.He is doing better today though so hopefully we are making progress.I am going to do better about updating from now on.

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.

All we wanted was a feeding tube

Almost two months ago we came into the hospital for what I thought was going to be a simple procedure.I thought we would be in the hospital for two weeks top while he was healing from his g-tube surgery.Boy was I wrong.During these two months Brady has had:
-enlarged liver
-elevated liver enzymes
-low blood sugar that required emergency shots to bring it back up
-MRI to make sure he didn't have a brain tumor
-a new diagnosis 

Congenital Disorders of Glycosylation

-uncontrollable seizures they he has all day and night

-can't tolerate his feedings

-muscle biopsy that came back abnormal

-Probably more but that's all I can think of right now

As you can see Brady has had a tough time.I think he is basically over the hospital.I am too.It's been a long time and I'm not sure I see an end in sight.I just want him to get better.I want my happy baby back.It's hard seeing him miserable.

Long Month in Hospital

Brady has been in the hospital for exactly one month tomorrow.He got his feeding tube but he is not tolerating it well.They are also worried about his elevated liver enzymes and his enlarged liver.His blood sugar also keeps dropping.One top of everything that is going on his growth hormone test came back too high and they can't explain it.It's just been a long month.

The Hospital is now my home away from home

Brady has been in the hospital since Monday.He had a seizure in the middle of Comcast.We spent hours in the ER because his stomach was extremely bloated and they had to get his fever down.


They have ran many test on him and so far they have confirmed: food is not going down his esophagus right, he is not digesting any food, he has elevated liver enzymes,and he has trouble swallowing. He is  now banned from having food by mouth. They are trying to figure out what kind of tube is best for him.


It's so stressful and scary. We are going to be in the hospital for a long time. I just hope they can finally get to the bottom of things. I hate seeing my baby in pain.