What A Difference A Tube Makes

Brady got his g tube last Monday.I was so nervous about him getting it and I was against it at first.After Brady got it he was still vomiting.I was tired and defeated.I felt like Brady was just never going to stop vomiting.They started his feeds last Wednesday.It was a slow process but the vomiting has stopped!Brady is staying up more and he is getting his personality back.He is at his first goal.He is at 39ml/hr.We now have to increase so he stay off for a few hours.We are also going to start cycling the TPN so he will only use it at night.I am so glad he is getting better.There have been times where I have been so worried about him and after 7 months in the hospital it is about time he is closer to finally going home.

Over one hurdle

Brady has had a really rough few days.He was doing a little better up until Friday.On Friday they decided to try to attempt to give him some feeds.The feeds were only going at 5 ml/hr.Brady couldn't even tolerate that and his retching and gagging started.He also started having labored breathing and lots of wheezing.It was so hard watching him in pain.I hate seeing him uncomfortable.It was one of the times I actually started to really worry about him.The vomiting just was not letting up.

Today they told me if they didn't get in the gj tube soon they would have to send him home on TPN for a few months and then reschedule the gj tube in a few months when his health was a little better.Well Brady already has liver problems and the TPN is bad on the liver.I'm okay with him being on cycled TPN when he goes home but I don't want it as his only source of nutrition.At least not yet.I want to see if the gj tube will actually make a difference.

They ended up getting him scheduled for today.I was nervous but if it is something that they think he needs I think they should go for it.He seems to be doing better.He will start feeds tomorrow.I pray that it helps.I hate seeing him in pain all the time.I will keep everyone updated.

I Wish I had A Magic Wand

I had Brady's care conference Wednesday.I was sick to my stomach the whole day.I hate those kinds of meetings.You are in a tiny room with all kinds of doctors making plans for your child.I know Brady has a long road ahead of him but every time I have one of those talks with the doctors it is always hard.The plan is for him to get the gj tube and do cycled TPN.It was what I was expecting but it is still hard.Even with all of Brady's diagnosis  I have always held out that he could get better.Maybe some test was wrong and later on he would come out of everything.I know that is not the case but I always hold onto the thought.

Thursday he woke up congested.In the matter of a few hours he was all junky and just not feeling  right.They did an x-ray and he has aspiration pneumonia. He has been miserable.He has to have oxygen and he has never needed it before.He is not happy at all.I just wish I had a magic wand and I could make everything all better.He is an innocent 2 year old.He should not have to go through all these test.He should not be hooked up to all these wires.His stomach is fill with cords.I hate seeing him in the hospital all the time.I know that things will eventually get better but it is so hard seeing your baby in the hospital all of the time.

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.

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.

Happy Boy

I've been really neglectful of the blog lately.Brady was sick was weeks.He had a cold he just couldn't get rid of.He's still a bit congested but he's been in a great mood lately.I love when I can see his personality.He has an infectious laugh lately.He just laughs at everything and I love it.He's been eating bites of food.It's not much but it's a start.I'm trying to give him bites of food three times of day and snacks and hopefully he'll catch on.He doesn't go to the doctor until Wednesday so I don't know his weight.He goes to the scoliosis doctor.Hopefully they'll start the bracing process but I don't know.I'm just enjoying my time with him.I'm glad he's showing his sweet personality.

Still sick

Brady has not been a happy boy all week.He is fussy,stopped up,and just overall miserable.I have been trying everything to make him happy but nothing is working.He isn't eating like he was before.He is still rolling over though.I'm happy because I'm glad he got that skill back.I just hope he starts to feel better soon because I hate it when he's sick.

Doctor appointment Today

Today Brady had an appointment with his opthamologist. We were there for 4 hours but they didn't tell me anything different.I did learn that he is finally tracking.That's a good thing because he has never done it before.She did say that his optic nerves are pale and small.I knew they were small but I never heard of them being pale.She wants to work with neurologist to do some test.I guess they want to see if they can see anything on an MRI but usually they don't find much.I just hope they can put everything together soon so they can figure out what is going on with him.

My Week so far

I think I figured out why Brady was a fussy butt a few days ago.He has 4 new teeth coming in.He has never taking teething well.He has about 12 teeth total.It's weird everytime I see them.He is so little and he won't take solids.Everytime he opens his mouth it's so funny to see all those teeth.

He had an doctor's appointment today.He was 12 lbs. 8 ozs.He gained 2 ounces.There was no change in height or head.I wasn't expecting any change though.They still want me to consider a tube.I would like to get him one for supplement.I just need to find a GI.He goes to the eye doctor Thursday.I hope they can tell me if he has any vision.I think he can see up close but I'm not really sure.

He is a joy lately when he is not fussing.He has rolled over a few more times and he is laughing all the time.I'm really enjoying seeing a personality in him.

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.