Friday, December 25, 2009

Merry Christmas!!!!

 Today we enjoyed a very merry Christmas.Brady woke up pretty happy.He had no idea what was going on but he enjoyed opening his presents(well I opened them for him).He got some baby einstein toys.I can't wait to use them during therapy next week.He also got a precious planet jumperoo.I don't know if he is too little for it but we will see tomorrow.We also visited family for a few hours.He cried for a bit because he hates noise.Since he doesn't have the best vision,his hearing is very keen so he hated the noise.Once he got the hang of things though he did.He is now knocked out.I think he had a great Christmas.

Wednesday, December 23, 2009

I hate doctors...

Brady had a doctor appointment today.I hate taking him to the doctor but I knew he had an appointment with the doctor he sees all the time.Before his appointment I found out his doctor was not in.Well I hate seeing other pediatricians because I hate having to explain his situation to everyone.They don't understand him and his needs so the appointments are always a bust.I just let him get his shots and I'm going to make him another appointment.

Saturday, December 19, 2009

Enjoying Peace and Quiet While I Can

The kids are gone to a birthday.I couldn't go because Brady is on two seizure medicines and they make him really groggy.He decided to take a nap today.Usually he is up all day because the medicine gives him energy.I'm really nervous about his weight.He was born 6 lbs 7 ozs. and his weight has never been more than 13 lbs.He went for a weight check a few days ago and he was 12 lbs.I think I might have to go with the tube.It's something I really don't want to do.He's already been through so much the past 13 months but if it's something he needs I guess I have to do what is best for him.

Some good news though.He started babbling a few days ago.I know most babies who are 13 months are probably talking but it's a start.It gives me hope that he can learn since he is mimicking.It's a good thing for him.

I'm going to enjoy my few hours of peace and quiet.I rarely get time to myself so I'll probably catch up on things I never get to do.

Friday, December 18, 2009

First try at blogging..Ramblings About my crazy year

I have no idea if anyone will ever read this but I'm Candice.I'm a mom of 4 and my youngest is a boy named Brady.Brady has given me a year full of ups and downs.He was born perfectly healthy.No major complications.Just a healthy little boy.

I noticed when he was 3 weeks old his eyes were "shaking."He went to an eye doctor and was diagnosed with nystagmus.At the time I was worried that he would have some vision problems.If I only knew then nystagmus nothing compared to all of his medical conditions.

When Brady was 2 months he started having seizures.They put him in the hospital and ran every test imaginable on him.They could not find anything wrong with him.He was just small but they couldn't give me a reason for his nystagmus and trouble gaining weight.

2 weeks after being discharged back to the hospital we went.He was having trouble breathing and he was diagnosed with RSV.During this visit is when everything changed.He was diagnosed with motor sensory neuropathy(no reflexes) and optic nerve hypoplasia(small nerves in the eyes).During this visit is when everything changed and we started our journey of medical mystery.

Brady now has many diagnoses and some things are still not explained and known yet.It's just a wait and see game.His list includes:nystagmus,motor sensory neuropathy,optic nerve hypoplasia,scoliosis,microcephaly,Cornelia de Lange syndrome,and seizure disorder.

A year ago,if someone would of asked me what half that stuff was I would of had no idea.It's been a long 13 months but it's a journey that I'm ready for.He has taught me so many things.He's a lot stronger than I am.