I spoke too soon

Every time I think Brady is making progress he always has a setback.Today he has been extremely cranky.He cried all day.Nothing would sooth him.I tried giving him a bottle.He didn't want it.I tried Pediasure.He wouldn't drink it.I tried rocking him.He just cried.He has just been very unhappy.I even think he had a seizure today because he kind of zoned out while laying on the bed.He was having up to 5 seizures a day but he was doing better.I hate when he gets like this.Since he doesn't talk it's hard to just go off of cries trying to figure out what is wrong.He goes for a checkup on Tuesday but I don't know if there is much they can do for him.He doesn't go to the neurologist until March but I'm going to call Monday to see if they change or increase his seizure medicine.He just finally went to sleep.He wants to stay up all day lately but when he's up he is not in a very good mood.Hopefully this is just a phase and he will be in be in a better mood tomorrow.

Progress

Brady has actually been doing really well this week.He is getting a personality and eating more.I'm so glad he is finally eating.He's playing and more and I'm noticing a difference in him.I think he is going to start rolling over again also.He was rolling over when he was around 5 months but then his seizures started and he lost the abilities he had before his hospital stay.I still have hope for him.I think that there is a chance that he might be able to do some things.He's only 14 months old.I'm going to keep working with him and hope for the best.

I hate Doctors!!!

Well I took Brady to the GI doctor today.He was suppose to go to get a consultation for his feeding tube and to recheck his enlarged liver.It didn't go that way though.His doctor basically said there is nothing he can do for him.He said that Brady isn't going to grow.His brain damage is too severe and he has too much going on with him that there isn't anything he can for him.He said he won't give him a tube.He even told me to give him whole milk.He has severe milk and soy allergies.Why in the world would I give him regular milk.He said Brady is never going to get off the bottle and I'm wasting my money buying expensive milk.

I am so mad.This man has only seen my child twice and that was for 15 minutes.He doesn't know anything about my son.He said his Xrays  came back normal.He has a horrible curve because of scoliosis.I know his spine is not perfect.I'm just mad that a doctor can say that there is no hope for a 14 month old.He can still live a good life.I'm okay with him not being about see.I would love for him to be able to see me but I can deal with it.I'm okay with him not walking.I would love to see him run and jump but if it doesn't happen I'm fine.I'm okay with him being behind.He can always catch up.To tell me to take my son home and keep him fed and comfortable,I don't accept.I know children can make progress.There is no way I'm giving up on him.I'm going to prove that doctor wrong.

Wordless Wednesday

The Day I have been dreading is Coming..

Today I spent all day making doctor appointments.Brady is already booked with appointments until March and I'm sure there are more to come.I called his GI doctor.I was sure it was going to take a while to get an appointment.Well he's being seen Thursday.I'm so nervous about the feeding tube.I know it'll probably make him healthier but I'm still nervous.I'm a mom and I can't help but worry.I don't know what to expect and if I do decide to go through with the tube hopefully it won't take long to get an appointment and it won't be too painful.

Tired

Brady has been really fussy.He is eating better but he still isn't gaining much weight.I just don't know what to do when it comes to feeding issues.I've never had to deal with these issues so I'm lost.He's getting more of a personality which is good.I love when he interacts.It lets me know that he's there and fighting and it makes me feel good.He got measured for his cuddlebug.He's getting the smallest one available.It'll take a few months for him to get it.I can't wait because I hate carrying him in his carseat everywhere.It's so hard  to update because I'm just so busy.Nursing classes started back today so I might slack on the updates a little.

Been busy,,Sick therapies,etc.

Brady has had a few infections since Christmas.He has been congested and just miserable.He wasn't eating and he lost weight.He was 11 lbs 10 ozs two weeks but today we got a weight check today he was 12 lbs 8 ozs.I felt good about that.I am really trying to stay away from the tube.I know babies with CDLS are smaller than other kids and with all his conditions it will probably just take him longer to gain weight.I would hate to put him through a surgery and he still stays small.

Today his therapies started back.Overall,he did well.Camryn went with me.I usually don't take her but she interacted well and was a helper.They are worried about his scoliosis.They said it was pushing his lung and heart.It is probably one of the reasons he is staying sick.

He is also getting fit for his Cuddlebug wheelchair on Friday.I've been waiting since his last hospital visit to hear something back about it.He is getting it customized and I hope it doesn't take too long.Even though he isn't too big it is hard carrying a car seat and all of stuff around to all the appointments and therapies that we have everyday.Hopefully he'll have it by the end of this month.