Merry Christmas!!!

Merry Christmas to you all!  We hope you had a wonderful, blessed day.  We are looking forward to belting out Christmas songs for the next couple weeks.  :D

We had a wonderful Christmas Eve with my family, a relaxing Christmas day at home and wonderful phone conversation with Mark's parents on Christmas night.  We received many wonderful presents but the best present was that James reaches his goal.  On Christmas Day he ate 100% OF HIS CALORIES BY MOUTH!!!  Praise God and thank you to St. Rita and all you wonderful prayer warriors out there!!!  He followed up with another 100% day today.  Now we just have to work on that drinking...

We took things really slow Christmas morning with a leisurely brunch (James ate at the table with us for the first time!) and then decorated the tree and put baby Jesus in the manger.  We spread presents out during the day which was fun.  It was the first time James got the concept of opening presents.  He enjoyed pulling the paper off and then seeing what was inside which he found extremely exciting.  He got to play with each toy for awhile before we sat down to open the next.  That made for a very happy baby.

Here are a few pics of our Christmas and a little video of James' stellar eating and exciting presents.

Merry Christmas!!!

James got a cell phone like Mommy and Daddy.

Putting his ornament on the tree!

Eating mashed potatoes for Christmas dinner.

Still in love with this present.

With love.

JAMES CAN EAT!!!

After a year and a half with a feeding tube, I would like to officially announce that JAMES CAN EAT!!!!!!!!  :D  We had a breakthrough last night after a really rough day of him refusing to eat.  It was day #7 of trying to wean, his tube was still doing poorly and we picked up a solution that is supposed to help with the soreness.  At the end of another day of no eating on his part and force feeding on mine (I hate doing that, but he has to get calories somehow) I thought we might just have to go back on the tube and fight through the pain.  But, we kept trying.

When dinner time rolled around I knew he wasn't going to want to eat.  I force-fed the feed before and he wasn't about to be happy with me.  So, tried to make him happy.  I got him in his car seat and grabbed his favorite book, "The Foot Book" by Dr. Seuss.  We finished, I offered him a spoonful, he ate it and swallowed!  A fluke, I thought.  Then came bite and swallow number two.  Hmm...what if I read him another book and give him a bite in between pages?  It worked!  I guess he loves reading so much that he forgot to fight us tooth and nail like he has for the past week.  I am so glad I stuck with my gut.  I had a feeling he knew how to eat and was just holding out on us.  Maybe it was just a battle of wills?  I mean he is almost two.  :D

Today has been a terrific eating day.  With four feeds under our belt he has taken 350 calories orally.  That is more than he has taken in the past four days combined!  With two more feeds we should reach our goal of 75% daily caloric intake orally.  Prayer to St. Rita #1 answered.  The second part is for him to take 100% of his daily caloric intake orally by Christmas and drink 25% of his necessary fluid intake.  I think we can do it!  We'll have to work on drinking a little more, but I know he has that in him too.

Here is proof!  He was a little distracted by the camera, but it gives you a general idea.  :D

Thank you all for your prayers and please keep them coming.  This is a MAJOR victory, but there is still a long road ahead involving work for drinking, different tastes and textures, chewing, transitioning to a more "normal" eating routine, etc.

Will keep you updated!

James' first Christmas cookie!

He really liked it!

With love.

Keep Praying!

We may have had a breakthrough tonight.  Whoever is praying out there is doing a good job.  :D  Thanks so much for your prayers and and please keep them coming!  St. Rita, pray for us!

More soon.

With love.

Adventures in Eating

James' tube site has degenerated to the point where giving him food through the tube is painful.  We saw his surgeon and it seems that the bleeding is coming from scar tissue around the tube.  Our first GI doctors burned his stoma (area of tissue that tends to grow up around g-tube sites) with silver nitrate in order to "remove" it which caused the scarring.  There is no real solution other than a g-tube revision surgery which would require the doctors to cut off the area of damaged skin around the tube and stitch it back around the tube.  As the doctor said, this isn't really an option at this point.  We are doing everything to help the skin heal (we have already changed types of tubes twice in the last week), but we still need to get food in him.  So we are attempting to wean James from the g-tube.

We were planning to undertake this feat after Christmas.  About one day after we started planning for this event that was still supposed to be three weeks down the road we had to get him off the tube feeds. So here we are.  We are really struggling with everything.  He needs to eat, he knows he is hungry, he can eat, but he refuses to eat a significant amount.  Yesterday we got 100 calories in him between 5 feedings.  So, we had to put food in his tube overnight.  That didn't go well.  We got him the calories he needed but he woke up crying from the leaking fluid several times.  I was hoping when I got him up this morning that things would go better.  He had a full tummy overnight so he was in a good mood but still ready for food in his belly.  He took some sips of water, but pushed the spoon away.  We have decided, after five days, that we won't fight him, just calmly take him out and try again at the next feed when he is hungrier.  We'll see how it goes today but my guess is that isn't going to last long.  We have to get food in him, it isn't an option for him not to eat.  We have good friends coming over today that are going to help.  One weaned her daughter off a tube and the other is an OT.  So, we should be in good hands.  :D

We are really struggling with everything especially because it is such an emotional stress.  We adopted St. Rita as our family saint during my pregnancy with James so she has become an important part of everything we do with James.  We said this novena several times during my pregnancy and James' hospital stays and it always got us through.  The line that jumped out at us and still gives us hope is:

"St. Rita, so humble, so pure, so mortified, so patient and of such compassionate love for thy Crucified Jesus that thou couldst obtain from Him whatsoever thou askest, on account of which all confidently have recourse to thee expecting, if not always relief, at least comfort."

Even when we didn't always get everything we asked for Mark and I always felt comforted, a sense of peace.  Our prayer now is for that comfort for Mark, James, and I as we undertake this task.  We have asked St. Rita to intercede for us to the Heavenly Father that James may be off tube feeds by Christmas.

We love St. Rita.  She really was a remarkable person who sacrificed so much for love of her God.  Would you all be willing to pray this prayer with us?

St. Rita, pray for us.

(The practice of praying to saints is in the same practice as asking one's friends to pray for your intentions.  These friends just happen to already be in heaven and have a direct line to God!)

Our little terror destroying boxes.

With love.

What Do You Do With A Tube-Fed Kiddo?

James does not think he needs to eat.  I'm not sure if he is bored with purees or he just knows that his stomach will be full thanks to that lovely feeding tube, but he is not very cooperative.  So, I decided to try something new.  We have a pack of those baby puffs that are fun and crunchy, but dissolve easily.  So, because he refuses to put them in his mouth himself, I did it for him.  He thought using his teeth was fun!  He did spit them back out, but it was a start to chewing!

Check it out!

With love.

James is (Secretly) Crawling

First of all, thank you so much to all of you who talked to your senators regarding the Convention for the Rights of Disabled Persons.  IT DID NOT PASS!!!  The margin was only 4 votes, scarily close, but we did it!

In the last week James has begun some exciting new things.  His hand dexterity has improved greatly.  He can now hold things in his mouth (a big help for teething)!  We are working our way back to oral feeding a little more, although he has figured out if he "coughs" he can get out of it.  Luckily, we are smart enough to tell a fake cough from a real one so he can't get out of it that easily.  :D  James is working on pushing himself into a sitting position from his stomach.  We have seen him do it a couple of times and it only lasts for a second or two, but it is a start.  He really has to want to do it himself otherwise he just won't try.

But the most exciting this is he is (secretly) crawling!  I have only seen him do this when he thinks we aren't looking.  He will try to grab a toy that is in front of him and if he can't quite reach it he does this funny commando crawl from side to side.  The "long-distance" crawling comes in when instead of grabbing his toy he accidentally pushes it a little farther away.  When this happens repeatedly he goes a good two feet across the room before he finally "catches" it.  It is pretty funny to watch.  Yesterday, again when we weren't "looking", James actually got into a crawling position on his own!  Remember the "Overall Crawling"?  He did that!  He pushed up onto his hands and tucked his knees in, gave a good rock forward and fell on his face.  Maybe not the most successful first attempt, but he did it!  We try to help him sometimes, but he seems to do better on his own.  He is a determined little kid and likes to fight our attempts to help.  But, when he is determined to get a toy he will find a way!  So, as you can imagine, our floor is constantly strewn with toys.

I haven't been successful in capturing James' attempts on video.  I will keep trying.  However, I will leave you with a picture.  James had a good time with his aunts when they were home for Thanksgiving.  Here are pictures of Aunt Allison and Uncle Thomas hanging out on the floor with James.  The first one is my favorite but despite all my rotating, Blogger just won't rotate it.  So the second one is for "easy viewing."  :D

With love.