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.

Been A Bad Blogger Lately

Things have been hectic lately.For two weeks Brady was having fevers everyday.There wasn't anything I could do to comfort him.He was even sick on easter.This week he has been doing so much better.He hasn't had any fevers all week and he is eating again.He started the Neocate Jr. and he loves it.He's been drinking 9 ounces.I weighed and it said it was 15 lbs.I'm taking him to the doctor next week to get an accurate weight check though.He has a VEP scheduled for Friday but they canceled.I can tell a change in his vision.He's tracking more but I would like to know exactly how much vision he has.


We're really busy this month.I'm finishing up this semester and we're moving to a new apartment this month.Will try to update more.

Another Day,Another Doctors Appointment

Today Brady went in for his 16 month checkup.I don't know about kids but he has a checkup every month.His stats were 12 lbs 11 ozs.I thought he was almost 14 lbs. but he was clothed at the neurologist so that was a fluke weight.I knew that was too good to be true anyway.He was still 28 inches.He grew 2 inches.His head was 38 and a fourth.So it's growing but it's not 39 like I thought.


They are still worried about his weight.He is growing in length but he still has chicken arms and is itty bitty.They think the tube will help and I agree.We need to get to the root of his feeding problems though.He swells up after eating and he is just miserable and cries.They said they should do a colonscopy and a biopsy of hos intestines.Something is causing him to be upset and I wish they knew why.They changed his milk to Neocate JR.I thought he tolerated the milk well.Well better than he is with the Pregestimil so we'll see how it goes.All in all it was a fairly good appointment.No more appointments this month which is good.