First report on Swallow study and Upper GI study

Initially Braden was schedule for an esophagram.  The Dr.'s decided they needed a little more detail.  So Braden had an upper GI study instead.  The initial report on this study is that Braden does not have a hernia. Hooray!!! His nissen is still wrapped and doing it's job.  Hooray!!! The bad news is his nissen has moved above his diaphram.  Which could potentially mean another surgery to fix.  We won't know till sometime early next week after the surgery team and the GI team have met to discuss. 

Braden's swallow study shows Braden is aspirating on thins.  :-(  Which is a bummer because obviously weaning has come to a halt.  We have already discussed what Dr. Wootten would do to fix the aspiration issue.  We just have to wait till Tuesday to find out if the plan is still the same and WHEN fixing the issue will occur.  So all in all not too bad of a report.

Braden was super tired today.  He refused to take a nap yesterday, went to bed later than usual, and got up at 6 am.  So he was cranky for both his Special Ed. teacher and his PT.  He didn't even last through his entire PT session without falling asleep.  Poor baby... so we were very happy that he did so well with his Radiology visit today and did everything that was asked of him. 

As soon as we get additional info. on todays results we will let y'all know.  Thanks everyone for your continued support. 

The boys have a new best friend

A one year old boxer named Briley.  She is an amazing gift and such a sweet doggie.  She is loving our boys and they love her too.

Please don't forget to contribute to the March for Babies in Memory of Kaleigh and in Honor of Braden.  We haven't set a lofty goal just $200.  I wanted everyone to know that even a gift of $5 or $10 can make a difference for babies like Braden and Kaleigh.  Our hope is that future micro-preemies will have a greater chance of survival.  So that families like ours will not have to suffer the loss of a child.  So that babies like Braden will have a much easier road.  Our babies March for babies webpage:  http://www.marchforbabies.org/bradenandkaleigh.  Thanks so much for your support.

Braden supporting the March of dimes while still in the NICU.

March of dimes walkers

We would love to see as many friends as possible come walk with us for the March of dimes in Memory of Kaleigh and in Honor of Braden.  An added bonus is we are doing this walk as a family.  So those who haven't gotten to meet Braden or Grayson this is your chance. :-)  Once I know how many walkers we will have I would like to get custom t-shirts.  So the sooner you sign up, email or send a message on facebook and let me know you want to walk the better.  Then I can order shirts.  Not sure of the cost just yet.  I will let y'all know asap.  Thanks so much for everyone's support.

Please come donate/walk with us on April 17th for Kaleigh and Braden at March for Babies!

Change of plans

We have a reschedule on the Esophagram.   The Dr.'s have decided that it would be a good idea to do both the Esophagram and Swallow study at the same time.  I am so glad.  So we are going next Thursday. :-)  Hopefully, by then Braden will be comfortable with drinking again and they will be able to see everything they need too. 

Weaning is a slow go...

Well weaning is going ok but not as well as it has been.  The gagging has started and I am a little concerned.  I will be glad to see what the esophagram shows so we can ease up on those concerns.  I just hope Braden will drink.  He hasn't wanted to drink since his drainage started two days ago.  We think it must be allergies since he has been on an antibiotic for a week now.  So today I am giving him some Zyrtec to see if that helps.  I am also tubing all his liquids during the day.  He started gagging earlier and was barely into 3 bites of his sandwich.  Which is unusual for him.  He hasn't had that problem in a long while.  The drainage must have caused some additional irritation that is keeping him from eating as well and drinking.  So giving him liquids during the day thru the tube and the Zyrtec will hopefully make him feel good enough to drink during his esophagram tomorrow.  We shall see... but for now we are suffering from a setback.  Which I'm sure there will be more to come.  I say that because many of the blogs I am reading about weaning have shown ups and downs and some kids take a very long time to get completely off the use of their tube.  On a good note though Braden has gained 7 more ozs since his Ped visit last week.  It's a big surprise since he hasn't eaten as well and has been sick.  But we are glad to see it anyway and hope that he will at least maintain it during this setback.

Enjoying a beautiful day while it last....

Quick update

Braden has his esophagram on Friday to check his hernia and nissen to see if it's still in tact.  We won't have results until Monday or Tuesday of next week.  I will post once we have details.

Here is a cute video of Grayson saying Momma.... :-)

Ok I'm back... lol

Grayson is not running a fever however he and Braden are chewing on the same toys.  So I am worried it's only a matter of time before Grayson is sick too.  I am doing my best to keep up with the germs but you just can't control everything.  I think we have learned that all to well over the past 3 years. 

Prior to this illness Braden has been doing great with his Wean.  He eats really well and has increased his drinking to 12-15 ozs per day.  However, when we weighed him yesterday he has only gained 3 ozs since Jan. 12th.  Which is confusing to me because I know I am feeding him alot more fattening stuff than I was prior to this whole weaning event.  Braden is very picky and so is little brother so I bought a cookbook for kids called "The Sneaky Chef".  I was really surprised how simple it is to sneak veges into your child's diet.  So I am anxious to try some of these tricks and recipes.  That will happen hopefully next week after this next grocery shopping trip. 

So that's what we have been up to lately.  That and I have joined several groups as well as make up my own for feeding and getting Braden off his tube feeds.  For those of you who may be getting help from the website the group I created is on Facebook.  It's called Gtube Mommies - road to eating and drinking.  It's just a group sharing info. you do not have to friend anyone to join the group.  Currently we have 28 members.

Below are some new pics and all the exciting advances that Grayson has made are captioned. :-)  Enjoy!!!

Grayson got his first tooth this week :-)

Braden loves his Pizza and brother loves to play with Braden's feet. lol

Grayson enjoying watching the snow fall.

Braden enjoying the snow.

Grayson is into everything :-)

Grayson is standing and cruising furniture now.  He is getting so big.

Strep :-( boo

Well I haven't blogged in a while because I have been so focused on Weaning Braden.  It's a lot of work doing his meals and making sure he eats.  I have been very stressed trying to do all this and I have finally started to level out.  Then Braden gets sick.  Yesterday he had a fever of 101.  Braden never gets a fever so I knew something was up.  Then he started laying around and was not his usual self.  So I called the Pediatrician and we got in.  They tested for RSV, flu and Strep.  He has Strep. ugh!!!  The good thing is we caught it early and I think he's going to be fine.  He is already doing much better today.  No fever and alot more active.  He has actually eatten although he is still not drinking.  Which who could blame him.  I don't eat when I have strep or drink much either.  And as I type Grayson just had a huge vomit.  So be back later...

Chocolate Gravy and biscuits

Here is another kid friendly recipe.  I am using canned biscuits to save time.  But my Mom had a friend who use to make Chocolate Gravy and biscuits when we were little.  I loved it.  :-)  It was something special when we went to Saint Louis to visit them.

http://www.foodnetwork.com/recipes/paula-deen/chocolate-gravy-and-biscuits-recipe/index.html

High Calorie recipe and website

Here is a website that has more good ideas for adding calories to our kids diet.  http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/oncology/hchpd.html

Also a recipe I have not tried yet but it sounds good. :-)

Banana Nut Muffins


2 Sticks Butter
3 Cups Sugar
4 Eggs
4 Cups Flour
2 tsp. Salt
1 tsp. Baking Soda
4 Mashed Bananas (very ripe)
1 tsp. Vanilla
1/2 Cup Sour Cream
A Bunch of chopped walnuts (optional of course)

Cream butter and sugar, add the eggs. Mix dry ingredients together separately and add to butter and sugar mixture. Add bananas, sour cream, and vanilla. Fold in nuts. Put in LARGE muffin molds and bake for about 20 min at 350 (a guess the recipe didnt come with that part sorry, keep an eye on them).

These have about 1000 calories per muffin...

A few updates ....

First,  I contacted Braden's ENT because I had forgotten to ask if Braden's trach opening was completely healed.  YES it is and we are so excited.  That means Braden is free to play in the tub. :-)  Soon both boys can be in the tub at the same time.  That will be such a great thing for all of us.  

Second, as you can see in this video Grayson is already pulling up and standing.  He has been working hard every day since he learned to crawl. lol  Sooo we think he will be walking very soon.  Then look out Big Brother.  :-)  Another excited thing for us to look forward too.