Holidays, emotions and a G tube....

     I have been thinking about this for quite a while.  Don't get me wrong, living without Joseph's feeding tube would mean living without Joseph, not an option.  But I feel bad for all of the things he misses.  When I found out I was pregnant I looked forward to sharing holidays, birthdays and vacations with our family.  I still love the time but it is somehow different.
     Let's start with Halloween.  Even if we bought all the candy at the store, he would not take a bite of any of it.  Not one thing.  Then comes Thanksgiving.  Turkey, dressing, mac-n-cheese, mashed potatoes.....nope not a bite.  Christmas is here now.  No candy, fruit or nuts in his stocking.  New Years comes and goes without the traditional good luck meal.  Birthday time.....not one bite of cake.  Easter time.....same story yet again.
     Some of you reading this have experienced this but for those of you with children who eat in the traditional way have no clue.  Don't get me wrong, having the G tube means having Joseph because without it he would die from dehydration.  Yes, you read that right, he would DIE....  To have a child who doesn't eat by mouth is an emotional roller coaster (this is without any medical issues added).  Think about the joy and pleasure you feel as you enjoy a great meal with friends and family....Joseph has never experienced this.  And that makes me very sad.  It makes holidays different for me.  Simply said, I want so much for him to eat, I want him to enjoy food.  My close family is really great.  They don't say the stupid things like, "you have to MAKE him eat", "when will the tube be gone", and the ever famous "I bet I can make him eat".  For that I am grateful.  They even tube feed him from time to time. 
     So where does all of this leave us.... Joseph's tube is here for as long as he needs it, if that means forever, then forever it is.  From now on we make new family traditions.  We continue to give him the choice to eat but do not force it. 

Good bye 2011, Hello 2012 !

     Shew, what a year it has been.  Seems like we have been set on crazy fast for the last year....Let's see what has happened....or hasn't....



      Joseph continues to amaze us.  He started therapy through the school when he turned 3.  It has really been great.  He can identify many colors, letters and objects in books.  He is trying to say more things and has started singing some songs....he says "Kinckle, Kinckle" for Twinkle Twinkle and then points to the sky for the stars.  He also sings the " E, I , E, I, OH" for Old Mac Donald.  It's great!!  He has finally learned his first sign..."All done"  and even says it too.  He got an ABC puzzle for Christmas and can with minimal prompting put all the letters in the right spot....


Almost done!



ALL DONE !!!

     He has started eating small amounts of food, no not kidding....But I think he might have an issue with gluten so we are trying to figure it out....

     As far as his medical stand point he is doing really well.  His room air sats continue to be 97-100%.  His breathing is easy and he can pretty much do what ever physically he wants or can do.  Not walking yet but he gets in his walker almost every day, he asks to get in it.... "IN IN IN"  too funny.  We are still waiting for approval for his wheel chair....stupid insurance!! 

     He will turn 4 in about two months and is going to get a very special birthday cake from a group called Icing Smiles.....I can't wait to see his face!!!  We also put in for the Make a Wish Foundation for him.  He has come so far.....This is where we started....



So fragile yet so strong....

And today....


Still the strongest person I know.....

 

A look at Christmas past.....

I know, I know but better late than never....

Christmas 2008

Christmas 2009

Look Ma, No oxygen!!

Christmas 2010

Christmas 2011

Much love from the Hartmann family...

A Christmas Miracle.....

     So Joseph has been asking every day several times a day to get in his high chair and have some "Num nums".  The last couple days he has been asking for a "cookie" (new word btw).  So this morning he asked for a cookie and to get in his high chair.  So Daddy put him in it and gave him a vanilla wafer....

   So he sat there for a minute and then starting licking it as usual....then.....He started taking little bites of it.  He would use his finger to get it on his teeth then he would chew and swallow it !!!!!  I know EXCITING !!!!  So in about 5 min or so this this what was left.....

Simply amazing.....

Thanksgiving 2011

     Hope everyone enjoyed the Thanksgiving holiday with friends and family.  We had our dinner yesterday. We always have dinner at my older sisters home and this year my mom was there too.  She moved down here a few months ago.  It was a really good day, aside from me being tired as I had worked all night...ugh.  But we all survived, lol. 

     Joseph had a blast playing and laughing and chasing his cousin Kylie.  He is still asleep this morning as I type this.  He is such a good boy.  He amazes me everyday.  So I know you are at the edge of your seat wondering if he had any dinner with us.......Well yes, yes he did !!!  He had the tip off of two pieces of asparagus, half a noodle, some small pieces of dressing and a small green bean !!! I know, who knew?!?!?!  Simply amazing!!!  So much to be thankful for.... 

     As I sit here I think of the posts I see on FB about family members of children with tubies giving the parents hard times about the child having a tubie.  It makes me so sad and mad at the same time. A feeding tube is not normal, I know that but neither is letting a child starve because they can't or won't eat.  People say "He/she will eat if they get hungry enough", uh no, no they won't.  I get the questions too from our extended family, "still not eating huh", "why won't he eat", "I bet I can make him eat".....I know you guys have heard it too, makes me want to scream....Don't you think I want Joseph to enjoy food and not have a tube.  A tube doesn't make life easier as many of them think.  Feeding schedules, insurance issues, vomiting, beeping pumps, and feeding non eating objects (bed, floor, car seat, stroller)...UGH !!!   

    I am so thankful that my close family get it and embrace Joseph and his tubie....

I don't want to jinx us but.......

     So over the last few weeks Joseph has turned some sort of switch in his head.  He is actually asking to get in his high chair.  By asking I mean pointing at chair and yelling "Num Num !!!".  He is loving Nutella on crackers.  He licks the Nutella off and then bites the cracker into pieces.  He doesn't eat the cracker but biting is a huge step.  He will also bite pretzel rods into pieces.  He is actually eating Gerber puffs.  He will bite off a piece and hold it in his mouth till it gets mushy and then he chews it.  He will gag but he gets it down.  He is also breaking toddler cereal bars into small pieces a eat some of it.  It has been such a long wait but I am so thankful he is trying more.   Thanksgiving should be pretty interesting this year !!!



Fresh out of the bath !!



Pumpkin Patch with his cousins Kylie and Emma!



The un-obstructed bowel....And a Cardiology visit....

All I can say is Thank God and thanks for all the prayers for Joseph.....So the story....


As most of you know we started back on a mostly blended diet (BD) for Joseph a couple weeks ago.  The last time we tried this he got severly constipated and it ended in a trip to the ER so were were trying to be very careful this time.  After about a week of BD he stopped having bowel movements so I started giving him more Miralax and gave him an enema.  Waited 2 days to see if he would go, nope he didn't so it was repeated.  By Thursday he hadn't gone so I called te GI doc and got instructions from them.  So he got an adult enema.  Then no more poop so it was repeated. 
     So I get home from work saturday I could hear his belly from across the room. So I checked him and his belly was distended.  So we headed to Redmond.  Got there and got checked in.  We go get KUB and wait.  During the wait we get several pokes to get IV placed....TEARS !!!!  So then doctor comes in and says that they think he has an obstrucion.....UUUGGGHHH!!!!!  So he says that they need to transfer him to Floyd because they have pediatric services.  I asked him if he was sure they would take him due to his extensive history and heart.  He smiled and told me that I might be right and he went to call them.  I have to add at this point.  Joseph has not acted like he was sick.  He has been laughing and playing but his belly is just not right.
     So doctor comes back and said nope Floyd won't take him that he will have to go to Atlanta via ambulance.  So Daddy leaves to go get things that we will needed.  We get packed up and head out.  Joseph loved the ride.  He did so good, even nodded off for a few minutes. 
     We get there.  Get checked in and get in room.  The ER doc comes in and gets info but she gets called away for trauma so we wait for a bit.  Then Radiology comes in and says that they need another KUB.  As we head to x-ray we pass the ER doc and she say that the radiologist doesn't think it is an obstruction.  we get the KUB amid screaming, Joseph hates the x ray machine.  The techs were great and Boo got ballons after so that made him happy.  Again we wait.
   Daddy got here just in time !!! Doc comes in and says... NO OBSTRUCTION !!! Woooo hoooo !!!!
So what happened......the enemas and extra mirlax allowed his colon to fill with air.  He was empty.  Poor baby.....So we get discharged and head home.  He will follow up with GI tomorrow and get another KUB to make sure everything is okay.

   Now for cardiology.....We always have anxitey when we have to go to see Dr. Romp.  Not that he is a bad guy, just the opposite wonderful guy but if you have a heart kid you understand where we are coming from.  So we get in room and wait just a few minutes and he comes in.   Oxygen sats were 100%, perfect! And the ECHO begins.  Right away we see the four chambers and I know where his right pulmonary veins should flow into his right atrium....yup there they were, great blood flow.  Both ventricles are pumping very good, great movement no dialation.  The left ones are harder to see but they were there.  No measurable tricuspid regurg so no pulmonary hypertension.  His ASD has the correct blood shunt.....WOOOO HOOO!!!
  Then we start discussing his heart.  Dr.  Romp said the most wonderful thing we have heard...."Treat Joseph like a kid with a NORMAL  heart"  What???? Did I hear you right....NORMAL????  Yes, yes that is what he said.  It was all I could do to hold the tears back.  No plan for cardiac cath unless he should become symptomatic and he said he would see us in 9 months!  He also added that again that had he not known Joseph's history he would not think there had ever been anything wrong with his heart.  I then asked about his thoughts on the chance of him having an issue with PVS in the future.  He said if they veins are going to re-stenosis it usually happens very quickly.  He added that the further you get from the surgery it dramatically lowers the chance of it happening...Music to our ears ♥ He said that Joseph was a testiment to the skill of the surgeon that did Joseph's repair.  Thank you God for giving Dr. Turrentine the skill and knowledge to save our son......