Monday, August 19, 2013

David Goes to Hawaii

First plane ride

Over tired silly

Turtle on the beach

Hang Loose


Only in Hawaii can you take photos that are postcard worthy

Tube feeding in Hawaii

Everyone loves a warm ocean, sorry California just not the same

Zac loves water falls

Enjoying the sun

First time boogie boarding

We really did go to the zoo, the Lund Family loves the zoo


Dole Plantation

Exploring the tide pools

Our only family pic from the trip

How much longer will he want to hold my hand

Such a serene setting

More waterfalls

Too cute
Hang Loose
Snorkeling like crazy loved it
Funny Zac

Zac's first canoe


Tuesday, June 4, 2013

Feeding Therapy Weeks 4 and 5

So week 4 we saw our feeding therapist for 5 days in a row then came week 5 we saw her for 1 day, her last.  The goal was 25 sessions in 5 weeks; we ended with 18 sessions in 5 weeks.  So we have 7 more to go over the next two weeks with a new therapist.  This is not because we missed a single session, our therapist had other plans.  So I am not sure how intensive it is 5 days week 1, 5 days week 2, 2 days week 3, 5 days week 4, 1 day week 5.  Let's say still no real progress.  We are stuck at more or less the same place.  We have better lip closure, better tolerance to brushing teeth, we have better utensil usage.  But he still doesn't swallow, he still does not have a food or drink that he likes, he still will not take more than 3 tastes of any food before he signs and says "all done".  

We do meet with the same doctor every week and we are exploring our options.  Trying to get enough swallows to do a swallow study not for aspiration purposes but to see what is going on with the swallow.  This is a remote possibility.  We are going to trial vital stim for one week to see if he can tolerate the procedure.  If he does then we will be on the wait list to start in 6-12 months.  It would be therapy 4 times a week for 6-12 weeks.

The last option the doctor presented is the inpatient feeding programs offered at CHOC (Children's Hospital of Orange County, CA) or on the East Coast.  More or less a behavioral psychologist feeds your child for 6 hours a day presenting a spoon or cup until they take a bite or drink then they get a reward....for 6 hours a day.  We are not sure David has the mechanics, motor planning, or capability to swallow how can I put him in that situation?  I gracefully declined and said that would be something to explore in a few years, maybe.  I forgot to mention leaving Zac and Daddy and living in a hospital or a Ronald McDonald house for 6-8 weeks. 

I am not even sure how happy I am to be finishing this program.  It has caused a lot of stress on our family. It is a huge time commitment.  It impacts David's naps every day which makes him very unhappy and tired.  It has led to more food refusal at home as far as tasting food and trying new things.  It has stressed me out and pushed me to my limits of balancing work and home.  It has led to many discussions between me and my husband some very intense.  I do feel there is no respect for the commitment made by the family, there have been some late cancellations, there are many hours waiting for the doctor to see us, and quite frankly we still don't see the benefits of the occupational therapy component (a whole different story on that later).

The pluses are knowing we are doing all we can do.  Having a team try to work through ideas with us.  Being taken seriously by the medical community that this is a very real issue.  Hubby and I really ending up in the same place at peace with the feeding tube but still working towards our goal of David eating (not his goal clearly).

My parting random thoughts for is easier to accept my child has Down Syndrome.  It is not common for a child with Down Syndrome to be 3 and 100% tube fed not showing active swallowing and no one can explain why, when, if, nothing.  He perplexes so many people and that is not comforting.  I am an engineer 1+1=2 every day of my life.  The "practice" of medicine still drives me batty.  I haven't fully embraced the feeding tube even though I really, really want to.  I love my child to the end of time and am thankful everyday that we have him on this earth.  He amazes us every single day with all of the things he can do.  I often underestimate his many abilities. Trying to keep my sanity. 

Saturday, May 18, 2013

Can't Crack the Code: Week 3 Feeding Therapy

David's first baseball game sat through 9 innings
They are starting to see what we have always seen, very few swallows. 

Every time David sees a new feeding therapist they are so optimistic during the evaluation.  He accepts foods, he puts food in his mouth, he sits through a 40 minute session.  If he gags and chokes, he tries again.  They all think it is going to be so easy. 

Well week 3 they had a team meeting and the result is the team is growing.  His first therapist at the Clinic is moving at the end of the month so we are getting a new therapist that works with kids with Down Syndrome, but wait there's more.  They are bringing in a third therapist who is certified for vital stim. 

They want to examine all possibilities through the therapy program which will go into week 6 and possibly 7.  Then if he still is not actively swallowing they will be looking for some much rarer possibilities.  This is wonderful news, why....they aren't giving up.....they aren't recommending continuing the same treatment for another three years with no results.  They appear determined to get to the bottom of this. 

I can't wait to play this through until the end.  This is my idea of possible outcomes: 1) he begins to swallow 2) he gets diagnosed with something new (repairable or not) 3) they never figure it out. 

The bottom line is I will feel at peace that we have done all we can do before we go back to our "normal" lives.  We can go on our family trip to Hawaii in July and David can start preschool in August.  And through it all he will be nourished one way or another and grow big and strong; goal met.

David checking out his new preschool at the local elementary school

Friday, May 10, 2013

Intensive Feeding Therapy Week 2

The schedule is really difficult. Monday 10-12 and Tuesday through Friday 11-12. Add travel time 45 min each way. Add Friday appointment with nutrition and gastrointestinal doctor. Now if you are really crazy keep working 20 hrs a week (usual is 30 hrs). Hubby has taken one day a week which really helps me mentally.

The first week was really getting to know David. He has an occupational therapist and a speech/feeding therapist. They needed to see his reaction to foods, approach, touch, people, praise, etc. He is already use to seeing 5 therapists a week and numerous teachers at daycare so he is very receptive to new people, therapy, and following directions.

The therapists observed what we have always known ....he won't swallow. So they are really working on the mechanics of moving food to the back of the throat and making the swallow happen. We focus in Beckman Oral Motor Skills, a series of stretches to the face, lips, and mouth. We work on cues for lip closure, moving tongue to the roof of the mouth, tongue movement in general, and biting/chewing.

We are making tiny improvements which are only apparent to us. From the outside looking in he still can't eat. But from our side he is learning new skills and the mouth is moving differently. An added bonus just might be some better articulation.

Looking forward to the next few weeks for more tiny steps or should I say bites.
Published with Blogger-droid v2.0.8

Saturday, April 27, 2013

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.

Friday, March 22, 2013

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.

Tuesday, January 29, 2013

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.