A week long birthday celebration!!!

Let me start by apologizing, it has been way too long since my last blog entry.  I will try to do better!!
     The end of 2013 was crazy.  Joseph had pneumonia for Thanksgiving and Type A influenza for Christmas!!!  Momma got both for Christmas (not fun AT ALL!!)  But we got thru it and are doing great!!!

     So Joseph turned 6 on February 25th!!!  We started his celebration by going to Nashville TN for the weekend.  We had a great time.  We went to the Grand Ole Opry and had a wonderful time!!  They wished Joseph a Happy Birthday on the show and over the radio to all the people listening at home!! He was so excited!! It was so great seeing him so happy!!  He loved all the music but was ready for bed when we got back to the room.

Then on his birthday he told me he wanted balloons, cupcakes and bubbles!!!  So that is what he got....

 

 

On Friday we went to the school and had cupcakes and juice with his class and the SN class...

 

 



 

Last night we had his party with the family....

 

 





He had a blast and then there was Fruit Loop.....

 

 

It was a wonderful week, a week we cherish and give all the praise and glory to God for all His many blessings.....

Birthdays, caths and great results, Oh my!!!

Happy 5th Birthday!!
 

It has been a busy month....Joseph celebrated his 5th birthday on Feb 25th.  We took cupcakes to school and he even ate a little bit of the frosting!!!  He is asking for more foods and tastes of drinks.  He says "Get in baby Joseph's belly!"  It is too cute.  He is doing amazing in school.  He can verbally spell his name and can write it too.  He loves words.  He spells everything he sees!  And then wants to know what it says.  His speech therapist tested him a couple weeks ago with flash cards.  He verbalized 54 words, she only wanted 50!!!  She feels he is ready for kindergarten.....PANIC!!!  This time last year he was probably saying about 15-20 words and now he chatters on like a monkey in a tree.  It isn't always clear but he really trys.



Ready for cath lab....
 

     Yesterday we went to Children's Hospital at UAB.  He had a diagnostic cath to confirm his ECHO results from his last few clinic visits.  It was a LONG day....He woke up at 430 am because he had a bad dream.  I am sure it was because he was feeling my anxiety.  So we got ready, gave him his meds and he puked most of them back up at me....ugh. So we changed clothes again.  I had told him we had to got to hospital for the doctor to look at his heart.  His daddy told him we would go to Bass Pro after he was done so that made him happy. 
     He got a dose of versed in his tube before he went back.  He was so funny.  He was watching TV and just started giggling.  Then he was looking at his hand and the lights....I am pretty sure he was seeing purple elephants!!!  We kissed him good bye and handed him over to the cath lab staff.  Then the wait began.
     It took about 2 1/2 hours.  They said when he started waking up he was trying to climb out of the bed!!!  We got back there and they were holding him down to prevent him hurting himself.  They had to give him additional fentanyl to calm him down.  I held him till he woke up.  Dr Law came and talked to us while I was holding him.  He said his heart and lung pressures were completely N-O-R-M-A-L !!!  Yes, normal....We are so blessed.  He did have to balloon his inferior vena cava again.  They aren't quite sure why he is having stenosis there but the good news is the pressures above and below the area is normal.  They surmise that his body has figured a way around it, which is good.  I asked him if they area could be restricting blood flow to his mesentaries or vessels in his abdomen.  The reason I asked is because he complains of left belly pain a lot.  GI is at a loss because his GI studies have been normal.  Dr Law said to let cadio know if his belly pains stop after this cath because that would indicate the IVC is causing some issue, so we will be watching this. 
     He woke up nice and then we had to wait till 6 pm for bed rest to be up.  He kept saying he wanted to go to Bass Pro.....It was a long 3 hours.  We gave him some Tylenol because his leg was hurting and some apple juice.  He did well with it.  Then about 45 min later we gave him some more....well it didn't go so well.  He puked everywhere.....ugh.  I figure his belly is like mine and I am always nauseous after anesthesia.  So we waited an hour or so and gave him about 45 ml, he kept it down. 
     At about 615 pm we were outta there!!! And we headed to Bass Pro...lol.  He loves the fish there.  we looked at them while Daddy did some man shopping.  Joseph picked out a Bass Pro race car...go figure.  And we headed home.  We got home about 930 or so and he was so ready for bed.  Got PJ's on, meds and some more Tylenol and he was asleep in about 5 minutes....Sweet boy.
     He did so good.  He was so brave and fought a  great fight.....He is my hero!

Ready to go!!!
 

 

 

 

4 years post op....

     Today marks the four year anniversary of the surgery that saved Joseph's life.  It was a horribly long day that day.  Joseph went to the OR twice that day. He then a few days later again to close his chest.  With God's grace and the skill He and direction He gave Dr. Mark Turrentine, Joseph's heart was repaired!!!

Joseph after two trips to OR.
 

     We are so blessed.  Joseph is doing so good.  He is doing things "they" said he would never do!!  He can verbally spell his name and a couple other words (bug, car, cat and almost flag!).  When he sees words he can verbally identify at least 80% of them!!!  Simply amazing....  He LOVES school and I am so glad I was "pushed" to send him.  He can count to 3 and can identify many colors and shapes.  He loves books, no really he LOVES them!!! We read at least 3 books a day and usually more than that. 
     He is scheduled for a cardiac cath on March 1, 2013.  His last one was Sept 2010.  UGH!!!  Yes it has been that long!!!!  Like I said, BLESSED!!!  His body has had several illnesses, pneumonia, type B flu and we did not have to be admitted to the hospital!!  This speaks volumes for his health!!!

     So how does one celebrate this....He has requested to go to Old Navy, Lowes, Walmart and the Fishie store!!! LOL!!! 

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.....