Miracles and Milestones.....

     Tomorrow is a big day in our lives.  Joseph is going to start school.  It is a huge milestone for a child who wasn't supposed to live till his first birthday.  I am a hot mess....not gonna lie.  I am happy, excited, hopeful and scared to death.  During his hospital stay (180 days), I was only away from him for 4 nights.  Yup, 4...and I am supposed to send him to school, with strangers, who can't understand him, AND they have to FEED him!!!! Ya, like I said, hot mess!

How can I trust strangers with this miracle?





     I know, I know, he is going to be fine.  He is going to grow and blossom into an even more amazing kid.  He is going to learn so many things and he is going to learn from the other kids.  Maybe even learn to eat????  Gosh I pray so....

     So the teaching team has been briefed.  They have 4 pages of instructions...lol.  He is going to have a one on one aid.  We are going to start slow and work up to the full day (6 hours).  I am going with him tomorrow and do some more care teaching.  Gonna be a long night.....

Fresh Squeezed By Infantino

The Fresh Squeeze Station by Infantino

    
     I have received the Fresh Squeezed Squeeze Station from Infantino to facilitate my review. I will give a bit of background on my son because he is not a "typical" 4 year old. My son was born nine weeks premature. He spent the first six months of life in the hospital. He has had two open heart surgeries, two abdominal surgeries and suffered a stroke at ten weeks old. He has had some sort of feeding tube since birth. He receives all of his nutrition via his feeding tube. He has an intolerance to lactose and a severe gluten allergy. Because of this his food has to be specially prepared.

He was about a week old here.  His feeding tube is in his mouth (OG Tube)

He is about 3 months old here.  He has a NG tube here (white).

My son's diet is different than most tube fed children. I give him real blended food thru his tube. A lot of parents in the tube feeding community have begun to do this due to feeding issues (vomiting, reflux, allergies, formula intolerance). Some parents have been doing it for years. When parents opt to do a blended diet the volume, calorie count and nutritional values are VERY important. I was very excited when I first read about this product. In the past I have used baby bottles to store his blended food. This takes up a lot of space. I tend to blend veggies and protein for one day and fruits with grains on the next day. My son still gets some formula so this is why I alternate his daily foods.

His feeding tube now.  It is a Button Feeding tube.

     So I have used the product ... I really like the pouches. The spout fits easily into the feeding extension. A gentle squeeze on the pouch delivers the food effectively. There is no loss of food. The four ounce pouch can be given to my son in about ten minutes. I can easily track volume and calories. The feeding station is a great concept and I was very excited to use it. However I was a bit disappointed once I did. There is a lot of food loss when filling the pouches. It comes up around the plunger.

Note food around plunger.

     It was a bit time consuming for me so I tried it with our syringes.  It went much faster and it I was able to know exactly how much was in each pouch.  As I said volume is VERY important in our world.



     This was prunes with rice cereal, honey, coconut milk and coconut manna.  It stored and froze wonderfully.  Actually everything I have made has done very well except spinach.  The liquid would come out of the pouch but all the spinach stayed behind!! 
     All in all the concept is great but a few minor changes could make it better. 

1. Graduation marks on the filling tubes.
2. A more complete seal on the plunger system.
3. Bigger pouches (6 ounce and 8 ounce)

I am sure parents with orally eating children will love this product.  It is also great on the go!!  Thanks to Infantino for giving me the chance to preview this product.  I am sure the Tube Feeding Community with give this product a try!

Feeding on the go!

Yummy!

Freezer storage.



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.....