Pictures

Lately the boys won't allow me on the computer without complete melt downs or being all over me. lol  So just the pics.... :-)

Braden's new bike

So we just weren't if Braden would appreciate a bike or be big enough for one.  We tried a tricycle but he showed very little interest.  So this week I was passing by our goodwill while on my way to drop off the dry cleaning and there I saw an almost brand new bike.  I stopped to take a look and all it needed was the chain put back on which Pop John was happy to fix for him.  The bike is a little to big.  As Braden has short legs and can't reach well enough yet.  But almost and I know by next summer he should be big enough.  We can now buy him a helmet next.  We think he may like something motorized as long as he can sit higher like a big boy.  I really think he lacks interest in the lower toys because he thinks their for the smaller boys.  He soooo wants to be treated like a big boy.  We love it.  Nothing better to keep him motivated. 

We go to the annual NICU party this afternoon.  We can hardly wait.... :-)  Pictures won't post so I will add them later. 

On the mend

Both boys seem to be much better the past few days.  Braden went back to school and therapy yesterday.  He was so happy to be out of the house he gave me a kiss after therapy. :-)  I say that because it was voluntary.  I didn't have to ask for one.  Grayson is still crying out some at nite because of his ear infection. :-(  But he doesn't wake up so at least he isn't so uncomfortable that he won't sleep. 

Levi is doing really well.  He is set to go home today if he is able to eat by mouth he won't have to go home with an NG tube.  I know their family is ready to be home.  It's tough being in the hospital for long stretches of time.

We have the NICU party on Sunday. We are sooooo glad the boys are well and we will be able to attend.

Grayson's McD's eggs, biscuit and hashbrowns.

Braden eating his favorite pancakes.

Happy to see their Pop Pop.

You just can't be close enough to the TV

Sweeties... they love each other.

Our little sickies

Both boys are sick.   Both had colds and are getting better but now they have ear infections too.  Bummer!  Hoping they get well soon so Braden can go back to school.  We also want to go back to the wade pool and can't till their ears are all good. 

Better day....

Braden is doing better today.  Much better and we are so happy.  It was a little nerve wracking worrying about how sick he might be.  He was pretty good even yesterday afternoon.  He was smiley despite his drainage and red nose.  He hates when I use the bulb suction on him and saline. I'm sure most kids don't like it but I hate being the bad guy. 

Levi is doing great medically.  His surgery only took 4 hours which is wonderful and his Mommy said that Dr. W had a huge smile on his face when he came out of surgery.  However, they did not keep Levi under heavy sedation last night like they did Braden.  :-(  So Levi is suffering from pain and it is difficult for him and his Mom.  They had a rough night and hoping today things get better. 

Last weekend and today

Braden and Grayson had a great time last weekend at the wade pool.  We will be spending alot more time there now that we know it exists. :-)  We also took Braden to his first Fair.  It was so much fun to see him having such a great time.  We rode the ferris wheel and Braden got to ride a donkey named Eeyore.  Eeyore is my favorite Pooh character.   This week Braden is sick. :-(  We took him to the Pediatrician this morning because he was having horrible drainage.  They think it's just a summer cold so he is on steriods and breathing treatments for the next few days.  Thankfully no fever and he is running around smiling so that's good. 

Our good friend's little boy Levi went into his trach reversal surgery just about and hour ago.  Please keep them in your prayers.  We are hoping everything goes as smoothly as Braden's surgery.  Their blog is http://www.rochelleray.blogspot.com/.  I will post again tomorrow pending news of how things are going.  It's going to be a very late evening for them with such a late start.  We are so excited for their family.  Such a big step.

Update

Well I didn't have to stay on the real food feeds very long.  Braden is eating really well so now I just do regular tube feeds.  At least now I have a new way to kick start eating without cutting Braden off the tube.  It's a much better option without sacrificing his weight. :-)

School and therapy are taxing Braden a little but overall he is doing well.  I am making sure he doesn't skip any naps and that has helped so much.  He is also eating well so I know that is helping too.  He is so excited to be back at school and loves being out of the house.  So does his little brother. 

Braden had his follow up cardiology appt. this week and overall the appt. went well.  They are going to continue to follow him so we go back in another 6 months.  I kinda wish we were done but I guess no meds or alarms means were ok. 

Well I don't have any pictures today and Grayson is not in the mood for me to be on the computer.  So this will have to be all for now.... :-)

Progress....

I started giving Braden a few real food tube feeds because I have heard several people say their kids will eat more by mouth when you add real food.  Not that the Pediasure isn't nutrition.  Obviously it is a good way to feed your child as well as convenient.   But when your desperate for your child to eat at least something by mouth it is worth a shot.  In Braden's case it is working.  Last nite he ate small bites of french fries and a cheeseburger.   This morning he ate grits and eggs.  I made the grits thick so they would have plenty of texture and he didn't even spit them out.  He loved them.  Grayson loves grits and eggs too.  It's the best meal of the day for him.  Next I am going to crumble some bacon in for extra protein and calories.  I also want to add I make sure Braden is getting his Pediasure too so I am not doing all real food feeds.  My base for the real food feeds is always a half cup whole milk and 2 tbsp heavy cream.  Then I add grits, eggs, yogurt and a fruit for breakfast, lunch I might do something like beans, avocado, and coconut oil, or gerber chicken and gravy with a stage 3 vege and either butter or Olive oil.  If I add a grain I either use gerber mixed grain cereal or a slice of toast.  You just have to be careful with cereal and bread or you will have to add more liquid.  I try to stay away from juices to reduce sugar intake and I also use real fruit that is ripe so it's soft and liquefies more easily.  Or I will use Beech nut stage 3 fruit if I am out of the fresh produce.  This way I don't have to invest in an expensive blender and put a bunch of money in feeding B this way.  Keeping the Pediasure on the schedule I don't have to worry about his vitamins and minerals being adequate for the day. 

We already have Braden scheduled for his private speech therapy. :-)  Ms. Chantelle has worked with Braden before and we are so excited she is available for us again.   I am so thankful for Dr. Wootten working with us on this and for Lyttle Foxes too.  Braden starts preschool on Monday and we can hardly wait.  I am so anxious to see if he can go all three hours and not have to come home an hour early.  We want him to get every bit of help he has offered to him. 

Great news!!!

I can hardly believe it but Braden has been approved for private speech therapy.  We have a new case manager with BCBS and Dr. W wrote a short letter explaining why he felt Braden needed therapy. :-)  We are now in the process of setting up sessions. We can hardly wait between school and private therapy. We're sure he will expand greatly in his communication.  He has already doing much better than in the past.  :-)