Intensive Feeding Therapy Begins Monday

 

Tomorrow we begin our next adventure.  Feeding therapy 5 days a week at our local Children's Hospital.  I am nervous.  I am excited.  I am cautiously optimistic.  It will effect our schedule, lives, work, stress, 5 days a week for 5 or 6 weeks.  Praying for a miracle.  My definition of a miracle.....David to actively swallow something..... food, drink, baby food, yogurt.  Stay tuned for more updates to come.

3 Years Old is Looming

 



I don't even know where to start, so much has changed from last year.  The biggest changes from 2 to 3 years old is the walking and the talking.  David walks everywhere, he still wears shoe inserts (smo's).  He does not run or jump.  He says he is running and walks really fast with his arms held out behind him.  His talking is huge for him, he can do two word combinations like "bye daddy", "woody on", "daddy 'ome (home)".  He mimics anything you say.  He does not speak very clearly but we understand.  He says words spontaneously now, which is a big deal for him.  He knows his colors.  He knows some letters.  He still signs a lot which helps when I can't understand what he is saying he pairs the sign with the word.

 

 

David is still very social.  He says hi to everyone when we are out.  He is very drawn to adults.  He loves to get peoples attention and make them smile.  He does not like it when other kids cry or scream, it upsets him greatly.

 

Zachary is still the best big brother ever.  He loves David, he is starting to understand what Down Syndrome means.  He has decided he will do all of David's homework when he starts school so David will never be behind.  He helps David and keeps him from getting into trouble (such as running across the street or escaping out the doggy door).

 



 

 

David's favorite people are Daddy, Zachary, and then maybe mommy.  He loves the dogs but is often seen pulling out their hair or kicking them or hitting them with a bat.

David still sleeps in a crib.  This is mostly to contain him.  He often wakes during the night.  He still takes a 2 hour nap every day.

David is still 100% tube fed.  Hoping to be in intensive therapy by June.  The goal is just to get him swallowing.  It will be a long road until he can eat by mouth.  We are still hopeful, although some days I get discouraged.

 

David does what most kids do.  He likes the park.  He likes to catch and throw a ball.  He likes to swing and go down the slide.  He likes to be silly.  He loves to help clean things and helping with laundry.  He loves to climb (I still don't know how he does that so well).  He just takes longer to learn things.  He has to be taught how to kick and jump and then we have to wait for the muscle strength and control to be at a point where it can all come together and he makes it happen. 

David appears to be healthy.  His heart is fine, his lungs are fine.  He has some swallowing issues, some of that is medical.  He sees quite a few specialists, more than everyone combined in the family.  He does not go to the dentist.  Between his oral aversion and his slowness at teething we have not attempted this yet.  He finally has all of his top teeth, last one is coming through right now.  On the bottom some are still missing and they look terribly strange and arrived in a haphazard order.

 

This upcoming year will be busy with intensive feeding therapy this summer followed by pre-school in August. 

 

He will be attending the same school as Zachary, the local elementary school.  We are in a well known school district for special needs, Deer Valley Unified.  That is just luck we have lived in this house for 10 years.  His preschool teacher just happens to have a daughter that use to be fed by g-tube.  They have a knew program that includes a sign language interpreter and a teacher from the school of deaf and blind.  There will be 18 children, 4 of those are typically developing (siblings of the others), most of the others are delayed in one area primarily speech.  The program has 5 adults.  This may not sound like a great ratio to you, but right now he has two adults and 22 kids in his class.  He will continue to spend half the day at his daycare he goes to right now where he is the only special needs student. 

 

We have not started potty training due to the g-tube.  Because of the tube he still wears a onesie under his shirt (so he won't mess with his tube).  Kind of hard to practice sitting on the potty with a shirt hanging down.  He also cannot pull up and down his own pants yet.  He is getting better at this and hopefully we will be working on this in the next year too.

Intensive Feeding Therapy Evaluation

 

 

The location is a children's hospital so I am not sure why I was surprised that it started out more like a medical appointment than a feeding therapy session.  Maybe because the instructions were to arrive with your child hungry, they will be evaluated by an OT and a ST, bring all of the foods you would normally feed him (ones he likes and doesn't like), bring bottles or cups he will use, bring spoons, etc. 

 

They wanted to begin the appointment by stripping him down for height, weight, blood pressure, and pulse ox readings.  I refused.  My kid has been through numerous medical procedures, he is not a fan of doctor's offices, people in scrubs, being examined, being restrained, being stripped naked, etc.  So why would you want to start a feeding evaluation by pissing him off.  I said they could do that stuff at the end of the appointment.  I still didn't like it; we had been seen at the same office Dec. 18th (not huge changes in the month since they did these stats).



So we move to the evaluation room, what I thought would be a therapy room.  What is a therapy room...oh it should look like a home setting.  Either a play room or a kitchen I would settle for a conference room.  No not here, it is an exam room with a high chair.  We were there for 3.5 hours in that exam room.  Boy was it fun.  The OT and ST were awesome, amazing, loving, caring, etc.  The setting sucked.  David was a trooper.  He performed well showing his stuff.  Good things like his OT skills playing with two hands, coloring, making straight lines, identifying some letters, signing and talking.  And the reason we were there the lack of eating.  I don't know how much I explained he does not swallow but they just didn't get it.  Well I think they finally got it when we did feeding therapy.  He tastes, he licks, he bites, he says yummy, he makes choices but he does not swallow.  He plays with food and brings it into his mouth but he does not swallow.

 

After his stellar performance we had to wait about 15 minutes for a decision from the team (nutrition, GI doc, ST, OT).  You would think it was his evaluation to get into private school.  Well they came in and they accepted him into the program.  It will be 5 weeks of intensive therapy ST 5 days a week for an hour OT 3 days a week for an hour and meetings with GI and nutrition each week.  They coordinated the surgical procedure with the snooty ENT (which I was unable to do, so that was a plus).  And now we wait we will get a call in 6 weeks to 3 months with a time slot.  If the time slot doesn't work (because it is nap time or something) we wait until we get a slot that works.  Then Steve or I will take a leave from work, FMLA and take half days for 5 weeks to get him to the Children's Hospital M-F and try to get him to swallow. 

 

 

Our goal is not to get him off the tube, we just want a child that can swallow something like a bite of cracker or a spoonful of yogurt or a sip of juice.  We don't expect a miracle....that will come in time.  

Feeding Update Hmmm and Arghhhh

Be careful what you wish for......remember the post from November.  Something to the effect of "at this point I just may be hoping for something that can be surgically repaired".  Well, they found something but they are not sure if they can repair it in David.  A laryngeal cleft, type 1.  The most mild form.  Not typically associated with Down Syndrome although when I put together my engineering brain it should be.  It is something that is not fully formed (just like his heart that had a cleft mitral valve, hmmmm). 

His case becomes more difficult because he does not have extra tissue there to just stitch it together.  So they are considering an injection that would last 3-6 months that could be repeated. 

What is this laryngeal cleft, in simple terms it causes kids to aspirate (in simpler terms drinking liquids can go right to the lungs).  What signs do we see in David since he refuses to swallow?  Well, he has a high incidence of water down the wrong pipe.  Swimming or baths or the rare occasion of a sip of water.  Often ends with choking, gagging, coughing, and a big burp.  Usually followed  by crying.  Would you want to try to drink if this was your typical experience with drinking, hmmmm.

Our doctor is not a big proponent of moving forward with the repair.  He refused to scope to look for this defect and only reluctantly agreed because the GI was going to scope with or without him.  He thinks it is not a huge deal because David doesn't aspirate because he doesn't drink.  Well, what if fixing it could lead him to drinking and eating and removal of the g-tube. 

This is going to lead right into a doctor vent.  The ENT does not deal with feeding issues.  He knows nothing about feeding.  Yes, David historically has a million reasons why he doesn't eat, but now he has one that is possibly able to be medically repaired which could change things.  The doctor who has never observed feeding therapy for any child, yet alone my child, still thinks the feeding issue is behavioral or a down syndrome thing.  Although our current feeding therapists believe that to be incorrect.  Arghhhhh.

The hero in this story is the GI doctor who is diligently pursuing this with the ENT and trying to get him to change his mind.  My heart tells me to change ENT's (although all roads lead to this ENT for pediatrics and down syndrome in the Phoenix Valley) although I do know he is a brilliant doctor.  His bedside manner has rubbed me the wrong way for 2.5 years.  He has placed David's ear tubes twice and taken out his adenoids and tonsils (all medically successful).  I am leaving this decision until January.

Until later, David remains 100% tube fed and a relatively happy toddler.  Mommy remains 100% aggravated with the medical community, a little short of sleep, and in love with her husband and two children.

Holiday Picture Fail

Why do I try to do my own pictures it is always epic fail.  This year Zac looks drunk and David looks like he is getting squeezed a little too much by big brother.  What is the solution..........

We are going to Disneyland.  Hoping for a good family photo there to send out to my peeps.

 

 

 

 

 

Love Hate Relationship with the Feeding Tube

The feeding tube. It can drive me a little crazy at times.  I will start with the good.  He would not be alive if he did not have his tube.  He can be fed anywhere anytime.  He can be awake or asleep.  He has never been dehydrated due to the tube: formula, water, juice, pedialyte no problem.  All medications through the tube, life saver once again.

You think about how to feed a kid in a one piece costume....

The things that are a bit odd.  I am supposed to count every calorie that goes through his tube.  I try not to be obsessive about it.  I don't write down his feeds anymore (that stopped about a year ago).  I do know that one ml of formula is 1 calorie.  I do know our calorie goal is 900 per day to gain weight.  It appears at 820 to 850 he maintains his current weight.  I know there are approximately 30 ml in 1 ounce; I learned this when he was still in the hospital as a new born.  I go shopping for juice and look for the highest calorie juice I can (140 cal per 8 ounces is good 110 or 120 and I will pass).  He is on soy formula, no milk.  I tried some other cool drink that had a whey protein, that made him puke for 6 hours.  He cannot have dairy, lesson learned after the dry heaves, puke through the nose, shakes, sweats, etc.  The child walks over to the scale every day to weigh himself, that is so not right on so many levels.  We are in a mode to try to gain weight.  I was back to waking up at night to feed him at 3 am it was rough.  I backed off for two weeks but will probably resume again as he is only maintaining.  He can only get so much in his stomach by day before he throws it back up.  If I put in too much it is coming right back out, so you guess and you push it a little and you wait to see.  With teething and illnesses it is harder as he tolerates less volume. 

He literally is on the scale every day...we ruined him

The hardest part.  Is him not eating, at all.  It is so difficult that he cannot swallow anything.  I mean a speck of egg, a crumb of gold fish, a mouthful of baby food.  Sometimes a sip of water although that may choke him out.  It gets extremely difficult to try every day to feed him watching him move the food to the roof of his mouth or to the front bottom lip so he can just lean over and let a slimy wet mess of slobber and food pour out of his mouth.  It is almost panic, maybe fear, disgust.  I don't know.  He likes to say and sign All Done during these times.  He will lick salt from crackers, pretzels, etc.  Hell, we have put a pile of salt on the table and watched him go to town.  Change that to sugar or baby food you will get an All Done almost instantly.

Give the kid an empty bowl he is happy as can be...add food he is ALL DONE

The extreme hardest part.  No one knows why.  The list of possibilities: he never learned to suck swallow breath, he had a bad heart, bad lungs, he was on a vent at birth, he breathed way too fast to attempt to feed the first 3 months, he has sensory issues, it is behavioral, it could be structural, blah, blah, blah, blah.  At some point his not eating cannot be blamed on his terrible health at birth.....he is 2.5 years old.  His heart has been repaired for a year.  How can it be sensory when he picks up the food, puts it in his mouth, and tries to swallow.  ARGHHHHHHHHHHHHHHH.

He is showing me how to relax

Where are we know.  He is 100% tube fed, zero calories by mouth.  He has feeding therapy once a week.  We are following up with a feeding guru Marsha Dunn Kline in Tucson next week.  She saw him last year and help us with open cup tasting (it is not drinking) and crumbs (it really helped him get the food from the table to his mouth).  We are hoping she will have some more ideas.  We then move on to a repeat swallow study to check for aspiration, maybe he is protecting his airway because it goes to his lungs.  He was tested at 7 months old with  one sip and one bite and supposedly passed.  He tends to choke on water (bath tub, swimming pool) every time.  After that evaluation he will be scheduled for an in depth scope of throat and his whole GI system under general anesthesia to see if there is a medical reason he cannot swallow (I just might be praying for something we can surgically repair at this point, that is how frustrating it has become).  And the last straw is we are on the waiting list for an intensive feeding program at our local Children's Hospital that I don't even like because I am desperate.

All full of laughter

Just some more observations.  A typical child (I have one of those too) will eat when they are hungry.  David is never hungry.  He does not get whiny or grumpy if you skip or delay a feed or three.  When they have a growth spurt they eat more calories, I get to choose when David will get more calories whether he wants them or not.  When a child has an upset tummy they will not eat.  I shove it in the tube and find out after he pukes that he is not feeling well.  Using food as a reward is not possible with David.  There is no m&m's for potty training or a sucker if you get your haircut or here's a bowl of cheerios to eat on the way to Nana's.  No birthday cake, no smells of your favorite foods, no trick or treat candy, no Easter candy, no chips and dip (that is my favorite, just sayin), it is really bizarre when I think about it.

On a day to day basis.  I tube feed him throughout the day.  Day care is trained and they feed him at school.  After a hot day on the playground he may get some water in his tube.  Usually, we push formula or juice for the calorie needs but water at an amusement park or the zoo is a great help.  I always fear when day care calls that it will be "the call" that his tube came out.  So far it has never happened (only at home).  He wears a onesie under his shirt so that he can't mess with the tube (he has pulled it out before); I am not sure when that will stop so we can try to potty train him.  He is a toddler so making him stop playing to be fed is very annoying to him lately.  The other kids obviously know he is different but to them it is normal for David as they see him every day.  Sometimes it embarrasses Zachary because people stare when I feed David in public.  I never mind when people stare, hell it is odd/different/strange/unique.  I do answer questions when someone works up the nerve to ask.

He loves to help

At the end of the day, this is really all that I currently have to complain about with David.  He is healthy in every other way and he is growing and learning.  The tube makes it possible to fight infection, get nutrition, grow, learn, play, laugh, etc. Hail to the tube.  To everyone walking by he is a little boy that happens to have down syndrome.  Sometimes it is like a dirty little secret that catches people off guard when I lift his shirt to feed him (you can see the look on people's faces).

He is learning to kick a ball and to catch, he throws great

Thank you for the therapy session. 

Fundraiser: Cutest Bags Ever

If you have not heard of Thirty-One before you need to check them out purses, bags, totes, etc.  Great for moms, working girls, and especially special needs moms.

I am having a party to raise funds for the Congenital Heart Walk to raise money for research.  You can donate on my page.  Or you can have some fun and buy some super cute bags and 20% of your order will go towards the fundraiser and you will get a super cool bag.  Order at http://www.mythirtyone.com/mrakolta go to my parties and look for Adina Lund's Fundraiser.  You can only shop until October 30th.

My favorite lunch bag is from thirty one.  It is super cute, large, and thermal insulated.

My super cool g-tube emergency pack, in case David pulls out his tube away from home.  It is a thermal insulated make up bag.  I choose this because it will be easy to clean if the lube breaks open.

And my go to bag that I use every week is this one. Today it is packed for feeding therapy. I also use it for overnight hospital stays. And when traveling great for the snack bag in the car, or the toys and books for the hotel, even saw a lady use it for the towel and swim suit for swim lessons. Love the pockets on the outside, it even holds my straw cup and a big Costco water. And since it is structured and stands up it doesn't fall over in the car. Super easy to grab and go and folds up small. This bag you can get for half off if you spend $31. So spend $31 and then this bag is only $15 dollars, this months special.

 

 

There are tons more great bags but these are my favorites.  You should at least look at the website.  You can always have your own party by contacting Melissa at melrakolta@gmail.com

 

Thank you for considering a donation to my fundraiser.  Research saves lives and thirty-one bags are a fun way to help or you can donate directly to my page for the Congenital Heart Walk.