Today's scope

Braden did well this morning.  He was sleeping for most of his pre-op time.  He did well going back to the OR and we are now at home and both the boys are sleeping.  Braden's pulmonary Dr. found a little cloudy fluid in Braden's lungs.  He suctioned it out and told us that we need be aware so that we can look for signs of Pneumonia.  The Dr. said since Braden has been doing so well he is not too worried.  But we are going to see what grows in the cultures if anything.  Also, Braden's ENT said one of Braden's vocal cords is still frozen.  Could be from not moving for such a long period of time and it may or may not start working.  If it does not then he can do a fairly easy procedure to fix it.  Braden also has some tissue in his airway that flops down on his vocal cords when he breathes in.  This too may not be a big deal.  However, if it starts to cause problems this too can be fixed fairly easily.  We go back in a month to see the ENT for an actual office visit.  Since Braden is drinking much more than before they are going to do another swallow study.  Just to rule out the fluid in the lungs possibly being caused by silent aspiration.  Hoping it's not because if it is we may have to put weaning on hold till the issue is fixed.  Braden has not felt like eating today.  Which is understandable after having an upper GI scope.  The nurse tubed some pedialyte during recovery.  Before she put his extension on Braden took his blanket and covered his Mic-key button.  He wanted her to know he did not want her tube feeding him. lol :-)  He recovered very quickly this time.  He was even wide eyed when they brought me back to see him.  He tried to eat when we got home but I'm sure it didn't feel good because he changed his mind once he got started. :-(  So I am giving him some pain reliever while he is asleep. 

Thanks everyone for keeping up with our boys and keeping Braden and our family in your thoughts and prayers.  We sincerely appreciate all of you.

Settled and checked in at Vandy. Scope is at 9:15 am.

Day 1 Sandwiches

Actually it's day 3 but it's day 1 of the official wean because I used all Braden's special boosters and new drinks today.  Braden is doing GREAT!!! We finally found at least one flavor of Pediasure that is a hit.  It's Banana Shake. :-)  He drank 6 out of 8 ozs today.  The most he has ever drank of a nutritional drink.  He will drink that much of his juice but 6 ozs was his daily total.  Now he is up to 10 ozs - 6ozs of Pediasure and 4 ozs of water by mouth today.  Yeah!!!! 

Our OT who is also Braden's feeding therapist told us that I need to keep trying sandwiches with Braden.  I tried several times and did ok but never really thought he would grow to love them sooo much.  It's the perfect food just like his OT said.  There are a million different recipes for a sandwich and a ton of ways to fatten them up.  So this is the staple for Braden's diet.  This is how we have come so far and are at this wonderful point.  The key that opened the flood gates. :-)  Let me say too she stressed regular old white bread. lol  So Bunny bread is the bread of choice.  Hopefully, at some point we can switch to a whole grain bread but toasted Bunny bread works the best.

Today's official calorie intake total was 1,442.  Yes, we did more than 1200 but I figure Braden will have good days and bad days.  So going over sometimes will just even out the week and hopefully will keep him gaining. 

I won't post his diet diary every day because it's going to stay pretty much the same as he only likes certain things.  Or at least for now ... once we find new things or high calorie recipes we can share I'll post them.  Here is one website for high calorie kids recipes.  These recipes were created for children with CF.  But we can use them too.  http://kidshealth.org/parent/recipes/cf_recipes/about_cf_recipes.html.  I need to search Paula Deen recipes.  I'm sure she has plenty of high calorie stuff. lol  I mean after all she loves butter, mayo and heavy whipping cream.  :-)

Breakfast: 3/4 applesauce (6 oz) with Duocal
                2 egg yolk and cheese sandwich with butter and mayo
               
Mid morning snack: 1/2 Nutrigrain bar
                               1/2 greek yogurt with Duocal

Lunch: Grill cheese sandwich with sundried tomato cream cheese spread and butter
           almost 1/2 and applesauce with Duocal

Mid afternoon snack: 3/4 of a Nutella and Peanut butter sandwich 
                                 1/3 of a Banana cream pie pudding (Swiss Miss)

After eating all that he wasn't hungry for dinner. lol  Which he often eats most of his food by 3 or 4 pm and does more of his drinking late afternoon and nite.  So for dinner he sat at the table with a stick of chocolate chip cookie and also ate a small bit of a toddler fruit bar and drank his Pediasure.  He has never taken bites independantly of the fruit bar before.  This is a first and a big step towards snacks he can eat on the road.  I am so proud of our big boy.  He is really making HUGE progress.   

Weaning has begun....

Well today's nutritionist meeting went WAY better than I expected.  I went and told her about all the research I had done.  I also came armed with a weeks worth of Braden's daily food and drink intake.  I told her that I had already cut Braden's Nutrin feeds by 50% over the past two days and the impact it made on his eating.  So she did exactly what we have already started and added some extra help to get us on our way.  Our goals are as follows:

8 ozs of nutritional beverage daily - offer by mouth first/ tube rest after he is asleep
8 ozs of water - offer same as nutrition drink
3 - 300 calorie meals with 3 different food groups represented
2 - 200 calorie snacks
Goal being 1200 calories per day

If he eats every bite and drinks all 16 ozs that's a little over 1200 calories but with the Duocal for added calories (42 calories per tbsp) he can eat less and still meet his calorie goals.  There are also things like oil, butter, mayo ect.. that I can add to his meals for an extra boost. :-) Braden also likes egg yolk and cheese sandwiches.  Egg yolks have 59 calories (based on lrg egg).  So no egg whites from here on out. lol  He doesn't like the whites anyway.  So I don't have to stress about the calories just follow the guidelines and hope he gains some weight.  We see her again in two weeks for a weight check.

Grayson did fairly well for our trip.  He did get bored a few times and has been thru 3 shirts today.  So I have had my hands full.  I got really frustrated on the way out of Vandy because I was trying to load the car and my bag broke with all the nutritional stuff in it.  lol  Thankfully Harold the valet guy we see every trip helped us out. 

New and interesting things

So now that Braden is trachless and 3 our whole world is changing.  Braden has decided to eat and not just small bits as in the past he is taking off.  He is eating sandwiches.  That is huge because now we can move to a new phase.  Getting this poor kid off his feeding tube.  He wants it out so badly that when I tell him he has to eat and drink and then tube feed him he cries.  It's been such a stressful few days as I have tried to find answers as to How to Wean.  We have feeding therapy which is great but the therapist are not suppose to wean your child.  We have OT and speech and again they don't wean your child.  They give them the tools to get there but then the road hits a dead end.  Same thing with our help from the Dr.'s.  In Braden's case none of them are looking out for him on this issue.   So I really don't expect much from our nutritionist meeting tomorrow.  But I am hoping I will be pleasantly surprised.  In the meantime I have found a group of mom's online that are sharing their weaning stories with us.  I am learning so much and am greatly excited.  At first I thought we were going to have to go to Austria to get help.  Yes that does sound crazy but it's become painfully apparent that the US has slow paced mentalities about removing the tube.   They just leave it on us the parent to decide.  Kinda the same thing when Braden was on O2.  Pulomonary never said a word during our meetings about taking him off his O's.  Finally after a year I'm like "hey he's more than ready when can we get him off the O's?"  Then they tell me "oh well we were just waiting on you to tell us".  ugh!!!! There are times during this whole experience I could just scream and that was one of them.  This one was too till I found this group to help us.  Especially so because of the fact that no one has the information so it seemed. So now it's just a matter of making a plan.  This takes priority over the potty training as we haven't started and it seems we are not quite ready for it anyway.  Once I have a plan I will be sharing with everyone.  As I know their are many other friends of mine that want to wean their kids at some point as well. 

In other news Grayson is officially a CRAWLER.  Tummy off the floor and truckin around like he owns the place. :-)  It's so great and we are just amazed how fast a full termer learns over a micro-preemie.  It's really soooo much different.  It really makes you appreciate just how much Braden has overcome. 

Braden started homeschool sessions with his Wilson County teacher this week.  She is here on Tues and Thursday for 1 1/2 hours.  We have to have another meeting with the school board to find out how much PT, OT and speech he will be receiving.  But I am thinking our schedule is going to be crazy again soon.  For now I will take this time to keep up with the crawler and getting Braden towards Gtube freedom. 

I am sure more has gone on since my last post but Grayson should be waking up soon and Braden keeps coming over yanking on my arm.  So I have to go for now... enjoy the pics.

3rd Anniversary

Today is the 3rd anniversary of Kaleigh’s passing. In some ways it seems like it was just yesterday when we lost her. There isn’t a day that goes by that we don’t think about and miss her, but the 13 days in-between their birthday and today always seem to be the worst. I would like to say that time has made it easier but it really hasn’t. We continue to draw strength from the fact we know our little angel is in heaven and the difference she was able to make in only 13 days.

Over the past year Stephanie and I have had even more opportunities to speak with and offer support to parents who are going through what we had to experience. Even though it takes us back to those very tough days, we know we are helping others like we were helped.

We decided to release 2 balloons for Kaleigh this year, one from Braden and one from Grayson. Even though it was cold the boys seemed to enjoy it. This is something we plan to continue to do and hope it will become an important day for Kaleigh’s brothers as the years go by.

Thank you again for all of your prayers and support over the past 3 years. You have been there every step of the way to watch as Braden has progressed into a little man.

Grayson's new haircut

Reschedule

We have had a stomach virus since Sunday.  All I can think of is that we caught it while at Vandy last week.  Fortunately, the past two days haven't been too bad and the boys had close to normal feedings.  Braden once again had to have his scope rescheduled.  So now we are looking at Jan 31st at 9:30 am.  Hopefully, all is still going well.

I'll try and post some new pics later this week.

New pics and a video

Update on the boys

Today was Grayson's helmet therapy check up.  We got great news!!!  Grayson's finished 3 months early with his helmet therapy.  We are so excited because he has all this beautiful hair that has been rubbed off and we are so happy he gets to grow it back.  We are so glad to get to see his face and be able to give him hugs and kisses without having that big ole helmet in the way. lol  But most of all thankful that his head is shaped appropriately and that he will not have any health issues because of it. 

Today was also Braden's 3 year check up with his Pediatrician Dr. Williams.  I am excited to say she is going to assist us with Braden's nutritional needs to help balance between getting Braden to eat and drink by mouth and still get the required nutrition and weight gain we desire.  I think this will make things easier because often times when I speak to our Vandy nutritionist the focus is just on gtube feeding and not so much on getting him away from it.  Plus I feel she is more directed towards helping us when needed but not on a regular basis. 

Braden turns 3

Well it's is amazing that we have come so far.  Braden turned 3 on Monday.  Wow!!! We can't believe our boy has gotten so big.  What an amazing 3 years he has had... he has grown so much in so many different ways.  We are so proud of him and so thankful to have him.  We are really looking forward to this year and the milestones ahead.  So much to accomplish and so many new things for him to explore. 

This week as you can imagine started out extremely busy.  We were suppose to have Braden scoped again Monday morning.  But we just weren't comfortable with getting him out in such cold weather and bad road conditions.  Grayson also had an appointment scheduled with the plastics doctor.  We cancelled his appointment as well.  Grayson has been rescheduled for tomorrow early am.  Braden has his 3 year appt. with his pediatrician mid-afternoon.  Braden's scope is tentatively scheduled for next Monday very early am.  They will confirm no later than tomorrow.  We will need lots of coffee for the next two weeks. lol  :-) 

Both boys are as usual very busy around the house.  I imagine as soon as Grayson can crawl he will be attached to my leg 90% of the time. ha!  He is back to Momma Momma Momma most of the day.  Braden is now pulling and dragging me everywhere trying to get things like Golden Oreos.  I think he is going thru a package a week.  If one is broken it goes in the floor so only a handful are truley being eatten.  But he is eating puffs really well again.  :-)

Banana cookies yummy

Braden eating cake :-)

Braden is tugging at me while Grayson is sleeping so I need to bring this post to a close.  Thanks for checking on our boys.

Progress and more progress :-)

Braden has been continueing to impress.  This weekend he started eating even better than before.  He really likes eggs and sausage gravy over toast. :-)  This morning during feeding therapy we started using a new tool to help Braden with jaw strength.  Braden loved it and even takes the tool and uses it on himself.  Which is awesome because it's less work for me.  We also had a break thru with Braden now he will eat food dry.  In fact, this morning he has already eaten an entire fruit bar and part of a grill cheese sandwich. :-)  He still won't pick up the pcs. of sandwich or fruit bar but he will put them on a spoon for you and motion to have them put in his mouth.    He is also trying to eat golden oreos like it's his job.  He has one almost at all times.  We have had a set back on the drinking.  He is back to just sipping and not taking in so much. :-(  So I will have to discuss with his pediatrician our options with him and see how we can keep him hydrated and still get him to drink.  Braden is also willingly letting me brush his teeth.  He has no issues anymore with it as long as I don't have to go in more than twice.  So that is also a huge accomplishment.

Grayson is just as sweet as he can be... his screaming and crying fits have been greatly reduced now that he can entertain himself.  He is also eating really well.  He has one meal a day and I am going to start him on two today.  Which has also helped with his night time routine.  Now he and Braden both are in bed by 9 pm and sleep till 6:30 - 7 am every morning.  It's so great and they both sleep in there beds.  Grayson actually likes it better than going to sleep in the swing downstairs.  Braden takes a little more effort but he does well especially for a toddler who doesn't want to go to sleep.   Both of them wind down with their glow worms playing.  I love those toys because they are a huge help both for naps and bedtime. 

The hardest part lately has been Braden's lack of communication.  He pulls on me and pushes me and does everything but sign or talk.   I am soooo hoping that his frustration will spark speech soon.  Next it will be Mommy Mommy Mommy or Daddy Daddy Daddy lol  but that will be music to our ears.  Grayson is like a little scavenger so my other issue lately is trying to keep all of Braden's food off the floor.  Since Braden almost always has a cookie, cracker or puff in his hand he drops a lot of stuff on the floor.  Like right now Grayson's bedroom has crumbs of cracker all over the floor.  I have to vacuum and pick up the mess constantly.  Grayson is like a magnet to Braden's crumbs. 

I took a few pics this morning.  Hope you enjoy!!!