Braden on fast forward

I had to post again because Braden is trying so hard this week.  He has been eating really well.  I made pancakes the other morning and he loves them.  I am so impressed because I gave him larger pcs. than I would normally.  Then today he didn't do as well.  But he is still having trouble with food touching the outside of his mouth.  Today I got him to eat puffs again.  He actually is picking them up and trying to put them in his mouth.   When I say he is trying it's not that he isn't capable.  He is more than able to do it.  It's his tactile issues and freaking out that prevent him from doing it.  It is very tough for me to see him struggle with this issue.  But I know he is really wanting to be a big boy and he is making HUGE efforts to overcome his eating issues.  Braden also drank 4 ozs of juice and is now willingly drinking at his meals.  Today he drank about 6 ozs from his sippy cup.  That's total for the day.  Which is wonderful because up until the other day he wasn't drinking at all.  So now I am taking away the Nutrin and only giving it to him before his nap and after dinner.  That way it won't interfere with his desire to eat.  Today he ate 4 times.  We are so proud of him.  Oh and his raiding of the pantry is getting worse. lol   We bought him some cheaper butter cookies hoping to use those instead of wasting the Gerber Arrow Cookies since they usually aren't eatten.  Ha!  That child examines the butter cookie and see that it is slightly different.  The cookie ends up in the floor and he digs in the pantry for the Arrow Cookies. lol  He is so smart. 

I am looking into potty training methods for Braden.  We are going to try the pull ups first.  They have the cool ones that will let him know when he has gone so that should work nicely for him.  I believe Braden is ready for this even though he is working on so many other things.  He has never liked being wet.  He also knows how to undress himself pretty well know.  So it's worth trying it out.  Once we get started there is no turning back.  I won't give up on him till he can master the task.  I would love for him to be prepared in many ways before starting school.  If I can get him to willingly eat and drink and be potty trained that would be awesome.  Yes I am shooting for big goals but Braden really wants to be a big boy.  He has gone from fighting me to brush his teeth to tolerating it with excitement.  He has been so excited to pick out his jammies at nite and help undress himself.  He is even going to bed at nite instead of falling asleep on the couch.  Now that we don't have his Tobi treatments so late in the evening we take him to bed around 9.  I have to lay next to the bed but most nites he falls asleep fairly quickly.  No longer than 30 mins.  Which I can see from watching Super Nanny that's pretty darn good. :-)

Grayson slept in till 8 am this morning and took some long naps today.  I think he may be going thru another growth spurt.  Wed. he has a ped appt. to get his second flu shot.  Bummer... hopefully he won't feel too badly after this one.  Grayson is eating also.  I am so thankful.  I am only feeding him a 1/2 jar once a day.  Next week I will go to twice daily and then each week add more.  He changes so fast Stephen and I both feel like he will be a big boy tomorrow.  But I do think part of Braden's need to progress is driven by watching his little brother.  I really don't think Braden will allow Grayson to do anything before him.  :-)  Which is great because that is one thing we had really hoped Grayson could do for his Big Brother.  Motivation is so important.  Grayson has also gotten his tummy off the floor a few times today and started rocking.  Which is very exciting and I can hardly wait till he can independantly crawl and get whatever he wants.  I know some may think I'm asking for it because he will be into everything.  But again these are all things that will motivate Braden as well as just make life fun for both our boys.  Grayson is always watching his big brother and wants to play with him so badly.  He always grabs at Braden when he is close by and wants to pull on him and just smiles like crazy.  It's really adorable. 

Ok well it is late and all have gone to bed except myself.  

Good nite all and thanks for keeping up with our precious little guys.

Busy week for the Harris family

Well this week was a full one.  Braden had all his therapy sessions except the ones on Thursday.  Pop John and Nana came down from Tuesday to Friday morning.  We had a really nice turkey dinner Thursday nite and really enjoyed our visit.  We also loved being home for the snow but thankful Pop John and Nana went home before the roads became a mess. 

Braden got a basket ball hoop and a t-ball stand.  Both of which he absolutely LOVES.  We were pleasantly surprised that he is able to hit with his bat the ball off the T.  :-)  He tries it one handed too but the bat is a little to heavy for him.   But he really likes it alot and I am sure he will get better and better at it.  I posted pics of Stephen and Braden shooting hoops.  Braden can throw a b ball but needs some help on the height and distance of the throw.  I'm sure his PT will love these toys and will help him learn and increase his abilities. 

Braden is doing several new things.  This past week I started a mission to get Braden to stop putting toys in his mouth.  Each time I catch him chewing on a toy I make him give the toy to me and exchange it for food.  This obviously has a dual purpose.  So now not only does he give me the toy when I offer food in it's place but he is also raiding the pantry.  He knows his food from the other stuff in there as well.  I was shocked he threw all the stuff off the 4th shelf in the floor just to get to his fruit bars.  Ok so not so shocked about him throwing the stuff on the floor.  But actually knowing where the fruit bars were and digging for them was the shocker.  He also has some new sippy cups with his Super Why characters on them.  He's been pretend drinking out of those... which is interesting.  I wish he could actually drink from them.  They do not have a stopper in them and you have to drink as if you were drinking out of a straw.  He also ate greenbeans for the first time ever and seemed to like them and sausage balls.  The interest he has towards food is definitely increasing.  I also noticed he starts to cry every time I g-tube his nutrin.  It only last a short second but he obviously is getting more aware and realizes he doesn't want to be fed this way.  So I have been discussing it with him at every meal.  That if he wants the g-tube out we have to work on his eating and drinking.  That he has to drink alot in order for the g-tube to come out.  I also tell him I know how hard it is for him and that it's ok if he needs time.  He seems to understand and always makes an effort.  It's the same with brushing his teeth.  You know he hates it.  But he does his best to tolerate it and let me brush for him.  Stephen and I both really think that once Braden is in preschool and out with other kids this summer it's going to have a huge impact on him.  In some ways it makes me nervous.  I hate for him to realize he is different and struggle to do things like everyone else.  If it comes fairly easy to him I will feel great about it.  But if there are things he wants to do and can't that's the part I dread.

Grayson is doing great as well.  He is so active and loves playing with his toys.  He is really good at independant play as long as he doesn't see me. Ha!  He is so funny.  As long as he doesn't know I'm in the room he will play and play.  But if he sees me he cries.  Grayson is so close to crawling that his Pop John and Nana argued that as long as he was getting to what he wants than he's IS crawling.  Which he is somewhat doing an army crawl.  He pulls with his front arms and drags himself forward using one leg.  But his belly still doesn't come off the floor.  He still hasn't figured out how to use both knees.  Stephen and I have also discussed that once Grayson's helmet comes off he is going to hurt himself constantly.  He is completely unaware of banging his head.  I just hope he is walking really well by then because I think that will help him out alot.  I will try feeding Grayson stage 1 foods again this week.  Hopefully, he is ready to eat. 

Well good nite all and we hope everyone had a great time with their families this week.  Enjoy the pics. :-)

Our boys and an update

The boys have been doing so good and slept in till 7:30 am two days in a row.  But this morning they were up at 6:30.  Bummer as I hoped to get some additional rest.   Grayson is still napping really well but Braden likes to take naps late afternoon and then stays up till 9:30 at nite.  He just has so much energy and wants to keep running around the house.   Grayson on the other hand is very busy but still needs sleep several times thru out the day. 

Braden is doing fantastic.   We have been working on several things we couldn't work on when Braden was unable to walk.  Like picking out his pjs at nite and teaching him how to get undressed.  He gets so excited about doing big boy things.  His OT told us this week that she thinks Braden is old enough to be reasoned with on certain activities and we need to start discussing things with him.  Which I knew he could be reasoned with but I am so use to our routine.  I am having to make up new plans for our days and try new things with him.  So yesterday I told Braden he needed to eat his dinner.  Which consisted of fettucini alfredo, baked beans w/cream cheese and applesauce.  These are foods he hasn't eaten since surgery.  I told him that if he ever wanted to get his g-tube out like he did his trach he has to learn to eat.  So he ate and ate and even after I tubed his Nutrin he still ate an Oreo.  He destroyed the Oreo and didn't bite it but did a really good job of breaking it down.  Better than I have ever seen.  So we were very pleased.   I have also been letting Braden decide when he is hungry.  I ask him several times during the day and when he grabs my arms to pick him up I know he is ready to eat.  He now eats by mouth up to 4 times per day and after each meal he gets 4 ozs of Nutrin thru his g-tube.  Once he is back to eatting the chunky foods we will start drinking from a cup again. 

Braden loves his new big boy chair.  He sit in it during every TV show that he loves.  He also likes to stand in it, jump up and down, toss it around and climb all over it. :-)  So needless to say he is a big fan of the Pottery Barn chair.  I highly recommend them since I have never heard anyone say their child didn't like it. 

Grayson is still trying to use his feet instead of his knees to crawl.  ha ha... He too is not a big fan of eating.  Spoon feedings that is... Can you believe that???  He's such a little stinker.  He tightens up his lips and will not let me put food in.  So I think maybe he just isn't ready yet.  I am putting it on hold till next month and then we will try again.  One thing I am happy about when I have issues with Grayson I know everything isn't just a preemie thing.  Like Grayson is really low on the growth chart.  So I know and knew in my heart Braden is not just small from being a preemie but from genetics.  Feeding issues too are not just for preemies.  I think lots of people have issues with their toddlers.  I was watching Super nanny the other nite and this Mom's little boy was anemic and he refused to eat.  Partly the parents fault but still even after Super Nanny got him eating he was only eating a few bites of each food on his plate.  So I am going to start laying it down for Braden.  He has to eat so many bites and then he can get down from the table.  No more therapy advice that says don't force your child to eat.  I think Braden's therapist agrees we don't have to treat him like that anymore.  Braden is smart enough to know how to manipulate and he is really good if you just tell him what's expected.  Braden really is good most of the TIME.   He rarely gets into trouble anymore unless he is tired.  For some reason when he is tired he goes nuts trying to stay awake.  So that's when he gets into everything he shouldn't and I know he either needs a nap or it's bed time. 

Ok well that's a long post.  The boys were being so good this morning I had time.  I'll post more pics later this week.  I was hoping for snow today so if it actually does I will get the boys out in it.  Oh and Braden is still not really making any sounds or trying to talk.  I really do think it will be a while before progress is made.  It's gonna be one of those things that just happens one day in Braden's time. 

A few sweet pics...

 Braden after the meeting with the school board. :-)

Faces of Loss FB post today

I liked it so I wanted to post it.

‎"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they died--you're not reminding them. They didn't forget they died. What you're reminding them of is that you remembered that they lived, and that is a great gift." -Elizabeth Edwards.

Meeting with the School Board

Well I have to say Braden really was a hit during the school board meeting.  They thought he was so cute.  The overall evaluation went well.  The overall consensus was obviously that Braden should not attend preschool.  Which we knew going in but the kicker was how drop off works.  It's not an option either because basically your child is still exposed to the preschoolers.  Bummer... so last option may or may not be homebound.  The group we met with has to check and see if a child between the ages of 3-5 can receive homebound services.  Wow I didn't realize they could have a HOLE in the system like that... ugh!!!  Anyway, a little discouraging but one thing I realized is that most of Braden's delays are due to his trach and hip surgery.  Now that those two things are fixed who knows what he will learn all by himself.  Many of the things on the questionaire involved things we haven't worked on due to his in ability to walk or talk.   So I am probably worrying over him for nothing.  Since all things are done on Braden's time anyway. Lack of services may not hinder him so badly now that I know what to work on with him. :-)  I need to copy this questionaire before I turn it back in.  Also, the speech therapy will most likely be provided and the teacher is also going to send me instructions on teaching for speech. 

Oh and I have a picture I will post later of Braden sleeping with his coat and hat still on.  He was soooo tired after his eval..

Our weekend

This weekend was extremely productive.  I rid the house of at least 90% of our medical equipment. hooray!!! I also bought new storage bins for the boys.  I have several areas thru out the house for the kids toys so that they can play wherever they are... it works great.  It keeps them out of trouble for the most part.  Braden loves the new storage because he loves to dig and cause a big mess. :-)

Braden got a big boy chair from Nana and Pop John.  He absolutely loves it.  I am so glad he enjoys it.  It has really helped with his TOBI treatments.  He hates having the mask on his face.  I anticipated this but did not know how bad the first time out was going to be... he fought me and I basically had to hold him down.  It is awful to have to force your child to do something.  Especially when they have no understanding of why they have to do what your asking them to do.  Thankfully, Braden is now tolerating it.  He sits in his chair and watches TV while we throw the ball. 

Grayson is still not a big fan of tummy time.  However, he is getting better about it as long as he has things available to entertain him.  He is really good at rolling but has also been attempting to crawl.  Only not with his knees tucked. ha ha... he want to push with his feet which isn't working out so well.  I also started feeding Grayson a few 1st foods.  He gets rice cereal with apples and he likes bananas and applesauce.  He also loves the banana Yo Baby yogurt.  Not a big fan of veggies at all.  But I have ways around that and will introduce those over the next few months.

Braden's diet is still a work in progress.  I am making some adjustments to make his meals match a meal plan I got on Gerber's website.  Basically it consists of 3 meals and 2 snacks with 4 ozs of Nutrin with each meal/snack.  I am hoping this will help increase his appetite but I'm unsure of how long it will take for him to adjust.  I was giving him 2 - 5 oz servings of Nutrin first thing in the morning and the same late at nite.  With 6 ozs water mid morning and another one mid afternoon.  Which meant he would only eat by mouth 2 times per day and was rarely hungry.  At that rate we would never be able to rid him of the g-tube. 

Big Thank you

We just wanted to say again how grateful we are for Dr. Wootten and his group for doing an amazing job.  We are so thankful to live near Vanderbilt Children's.  Dr. Wootten is a fantastic surgeon and we are so fortunate to have had Braden's surgery so close to home.  We also are thankful for Kimberly and her being there through this whole process and making sure we've gotten everything we need. 

We are HOME... :-)

Braden couldn't be happier to be home.  Here are the pics from yesterday and a few from today.  I am still on cloud 9.  Hyper from my large coffee, lack of sleep and just over Joyed.  Braden is playing with his new toy Scout and I just finished downloading his playlist and name on it.  :-) 

We are so happy to be starting a new journey without a trach.  This has opened up so many doors for Braden and for our family.  I can't express enough how HAPPY we are and how we are over flowing with JOY. 

Braden did fantastic last nite. So we should be going home this morning.

Thank you everyone for sharing in our special day with our precious Braden. He has finally fallen asleep. Nite fb friends.

Today's Procedure

Today's procedure was a complete success - it couldn't have gone any better.  Braden's airway looks really good and he no longer has the trach!  It is still hard to believe that he has come this far.  We were always hopeful this day would come but it was a place we never really let our minds go.  I think we really always remained in the NICU mindset - celebrate the good days and make it through the bad ones.  We were still convinced this morning something was going to happen during today's procedure - more scar tissue to remove or something to stop the trach from coming out. It has been an exciting week but also a very emotional one.  It has been over 2 years since we have seen Braden without a trach.

It is going to be hard to break the habit of thinking we need to constantly suction Braden or always have his emergency trach kit standing by.  It's amazing how much stuff you have to carry around just for the trach. The constant fear of him pulling it out, it plugging, water getting down the trach and doing weekly trach changes really does wear on you.  We have been thinking back to when he got the trach.  It was so hard watching Braden have blue spells where he couldn't get air when he was in the NICU.  I still remember the ENT coming out and telling us she decided it was best to put it in - we were actually relieved because we knew it was going to help him so much. 

We can't thank each and every one of you enough for all of your prayers and support for Braden and our family.  You have watched Braden from when he was in the hospital and have seen all of his milestones.  Your prayers have got him to this point and for that we thank you.  He still has obstacles to get over but as he is getting older they are getting smaller and less severe.  We are so thankful that all of Braden's issues are ones that can be corrected.  From his hips to his trach - it has all been fixable.  Braden was at a high risk of many things that can't be fixed and we were blessed not to have any of those problems affect him. 

It was fitting that Stephanie was able to take the trach out for the last time today.  It was our routine during trach change that Stephanie take the trach out and put the new one in while I kept Braden occupied or at times held him down! It was funny to watch Braden react when she took it out - he sat there expecting her to put another one in and didn't know how to react.  I have a picture of it but left the camera at the hospital tonight.  I was in a small rush to get on the road since it was right at shift change at the hospital - you haven't lived until you have been in the parking garage at Vandy when the nurses are leaving!

I do have a picture from my phone of Braden.  Remember, he just woke up and is still trying to figure what in the world just happened - his face is priceless. I also put a picture in that shows Braden the night before he got his trach - it was actually the first night that I held Braden.  I still remember holding him and hoping it wasn't going to be the first and the last time.  It shows exactly how small he was at the time and how far he has come.  Thank you all again for your prayers and support - I am sure Stephanie will post more pictures tomorrow when they got home from the hospital and settled.

I got to do the honors of taking bradens trach out while stephen took pics. He will post on blog tonite. Going to rm 7534. We are so thankful.

Braden is now in recovery. once he wakes up they will pluck out the trach

Dr said braden's airway looks great. Trach is coming out. We spend the nite and should go home in the morning. Super happy!!!

Braden is now back in or. If they take out the trach they do not sew it up. Just cover with a patch.

Oops i was wrong they are very busy and recovery is over flowing

Thank goodness it doesnt appear to be crowded today. So hopefully all will be on time or close to it.

Settled in Vandy waiting room. Not yet checked in.