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.

Such A Good Appointment Today!

Brady had a great neurologist appointment today.He was 13 lbs 11 ozs.He also is now 28 inches and the best part was his head has grown.It is now 39 inches.I'm am so happy.He has never weighed that much and his head circumference and length are a huge improvement.His neurologist was very pleased.She is still concerned about his stomach though.After he eats his belly swells and he gets really cranky.She said his stomach felt hollow and you hear the milk floating around in his stomach.She still thinks he want needs the feeding tube.I want him to get one but I have to find another doctor.After the horrible experience I had with the last GI I have to find a new one before I'll get him a tube.She is also worried about his stiffness.If it doesn't get better he'll have to get on muscle relaxers.Because of his neuropathy,they are going to test him for neuroaxomal dystrophy.I don't know much about that.I had never heard of it before today.He also still has no reflexes.They increased his seizure medication since he is growing.Overall it was a good appointment.I'm really proud of his progress.He has come such a long way.

Scoliosis Appt. and Cuddlebug

Brady had a scoliosis appt.I was nervous and dreading it.I thought that his curve was getting worst.His therapist have really been working with him though.They are trying to get him to work with the curve. During the appt. they said there wasn't a change and they actually think it's gotten a little better.I was so relieved.He goes back in 6 months and they say there is no need for bracing.I'm so happy about that.

Brady's cuddlebug arrived yesterday.He knew there was something different as soon as he got into it.He could see the world and he was happy.He loves it and I'm so glad he's a big boy.

Brady's cuddlebug is coming

I ordered Brady a cuddlebug while he was in the hospital back in November.It's an early intervention wheelchair.He was fit for it and got it customized a few months ago.It's going to be blue and brown with puppy dogs on it.They called today and said it will be delivered Friday.I'm so happy that he's going to have it.It's going to be so much easier to do more things with him.

He's also been doing great lately.He's been really social able lately.I just love how his personality is showing.He's eating more and cooing.He's even clapping or I say that he's clapping.He's becoming such a big boy.