Friday, December 21, 2012

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.

Wednesday, December 5, 2012

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.


Friday, November 2, 2012

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. 

Friday, October 26, 2012

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 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
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.

Wednesday, October 17, 2012

Guest Post: What I Want to Know

I am lucky enough to know a handful of mom's who have adult children with Down Syndrome.  I always have so many questions for the been there/done it moms.  So I took an opportunity to do an email interview with one of those moms.  Her daugther is 30 years old so this mom knows a lot. 
This lovely mom is choosing to be anonymous because she would never want to embarrass her daughter or put too much out there about her.  She is a wonderful caring mom who is very proud of her daughter.  But I probably limited her based on the questions I asked. If you would like to know more add your questions to the comment section below.

Tell me when you accepted her as she is. When are you sad? When does DS bother you? When does it not bother you?

I believe there will always be a sadness for my daughter and our family

regarding her diagnosis. Obviously when she was young she certainly

was not aware of her diagnosis. But even by first and second grade she

was keenly aware that she could not perform Math skills like other kids

did or ride a bike like others her age did. It caused her frustration but not

sadness. However, by her late teens she was quite aware of her diagnosis

and says she “hates” having Down Syndrome. She gets frustrated with

her constant minor health problems and just yesterday she said she was

almost 30 and had no husband or no family. She also developed anxiety

issues in her late teens and I think this was when she truly became aware

of her disability. It was very, very painful for her to have her graduating

class leave the school and go on to college, jobs etc when she stayed


I am not sure that I ever did not accept her for who she was. She

certainly was not the child I had wanted or anticipated but as a nurse it

would have been impossible to be in denial. I grieved the loss of the

child I wanted, grieved her birth and the loss of what I might call the

“impossible dream”. I actually had no real idea of what her future would

look like or ours for that matter. I just did what I had to do to keep her as

healthy and stimulated as possible.

At this ripe old age of 60 my sadness is often fleeting and unexpected.

Like watching one of my nieces hold their newborn. Just yesterday I

heard a mother chastising her “typical” daughter in a store. I thought

“with sadness” how I would enjoy be able to shop with my daughter and have

her enjoy it. Often it is seeing a typical “mother - daughter relationship”.

One of my sister’s has 2 grown daughters and my other sister has 3

daughters. I do often find myself jealous and sad when looking at the fun

my younger sister has with her 3 daughters who are 15, 22 & 25 yrs. old.

I believe there is an underlying sadness that will always be there, to a

degree, but it does not control me or define me. I do not think that her

birth and diagnosis has really changed who I am but I have worked very

hard at trying to keep our family’s life as “normal” as possible. I do

believe that her diagnosis has changed my husband and that her

diagnosis has been harder for him to accept.

My daughter lives with us and will until we are not able to care for her and then

she will live with one of her brothers. She does almost everything with

us and is an integral part of our family. Most of the time I do not even

think about her having D.S. She is who she is. However I am keenly

aware at this age in our life that we are very limited in what we can do

compared to my friends. Some of our friends are retired and many

others are ramping their careers down. At the same time we still have a

dependent at home who requires a significant amount of time, effort and


Hardest times in your life with DS? Health issues? School?

I believe the hardest time in our life was definitely when she was born

and adjusting to our new “normal”. She had constant doctor’s appts. in

spite of the fact that she was really quite healthy. My boys were very,

very active and I also had elderly parents at the time who also needed

my attention. We were just very busy and adding her appts. and

therapies just made life more complicated.

After age 3 certainly there were many hard days dealing with the

schools. But for the most part we were just a family raising children and

fit in where ever we went. Now as we age I again feel that this is a hard

time as we face our own mortality with a disabled dependent adult. We

just updated our will and that was an emotional process as we needed to

really iron out everything with our boys . It also required us to figure out

how much money we spend on her/year to ensure we have enough

money saved in the event of our death.

Our daughter is now nearing 30 years of age.It is very hard to find something

for her to do that is stimulating for her. She does very well but does

not seem to have the stamina or emotional maturity to work a “real” job.

She is really too high functioning to work in a sheltered work shop and

can be non-compliant. We have been very fortunate to have her

volunteer in her local school district in the younger age classrooms and

the library. She also volunteers at the local public library. This keeps her

busy for about 20 hours/week. So making sure she has a stimulating

place to spend part of her day is always a great deal of work each fall.

She also participates in dance class and a cooking class but building her

schedule from the ground up is always a challenge and one I take very

seriously. Only because she can read very well and because her

communication skills are so good can she “work” in the library and

school environments.

Medically we have never been crisis oriented with her health. She

generally sees the doctor every 3 months for a medication review and

just to keep tabs on her health. She has GERD, anxiety and multiple

sinus infections but these really are minor inconveniences not major

health problems. She sees a psychiatrist every 2 months so she has

someone impartial to listen to her problems and for medication reviews.

How did Down Syndrome change you?

I believe that having a daughter with Down Syndrome has made me a

much more compassionate person. I had NO association with anyone

who was mentally disabled as a child and actually only casually knew

someone with polio. So this was a whole new world for me. As a nurse I

cared for physically disabled patients but never once did I have a

developmentally disabled patient. I certainly do not take for granted the

health of newborn babies. I am a more open, less critical person. I have

met many wonderful people on this journey that I would have never met

had I not had my daughter. Many of these people are top notch teachers,

physicians and other professionals.

Are you or your daughter active in any social activities related to DS?

Yes and no. I was very active in the Down Syndrome Association when

she was young. I actually ran it for 4 years. Now I have a very casual

relationship with the organization but rarely attend events. My daughter  takes a

special needs dance class and all the girls/women happen to have Down

Syndrome. She also takes a special needs cooking class but no one else

in the class has DS, but they all have some type of developmental

disability. We have been members of several organizations over the

years related to DS. Now as an adult we tend to join groups that are for

those with disabilities but not limited to those with DS. She attends a

special needs dance offered every quarter, also. I helped open a home

for mildly developmentally disabled clients approximately 12 years ago.

Although I have not been active in this non-profit housing for about 6

years I am still in touch with them. They have several residents with

D.S. and many social activities. We could be very involved in this group

but basically it is a long drive and we choose to do activities that are

closer and those that involve friends and family.

Best thing you ever did for your daughter. Advice you would give.

Probably the best thing I ever did for my daughter was not to make

excuses for her, I held her to a high standard of behavior. I felt she had

enough strikes against her without being a spoiled brat on top of her

other problems. I also have exposed her to all sorts of different social

situations where acting up was not acceptable, black tie dinners,

Broadway plays, airplanes etc..I have always found that parents of

handicapped children seem to be reluctant to discipline them. If she

misbehaved she was removed and not allowed to participate until she

could behave. I have literally been eating with several teens/parents of

girls with DS who cleared that area of a restaurant. I am truly the only

person I know who will stop and discipline my daughter. Most of my friends

allow their children/adults to interrupt, speak very loudly, and generally

get away with murder. I attribute it to the parents being so used to poor

manners that they do not recognize it anymore or just due to the parents

being so warn out that they let things slide. In the end this only serves to

limit the possibilities for their children. I care deeply for all these people

but do not understand why they are so reluctant to enforce common

sense social boundaries.

Biggest mistake you made, if you had a "do over" what would you

I think the biggest mistake I made was letting her weight and diet

get away from me. She was always a good eater but never gained weight

easily until she was about 7 years old. During her teen years she packed

on the pounds and then after her brothers left the house we started to eat

out more. I should have nipped it in the bud when the weight gain first

started and really emphasized healthy eating and adequate exercise.

Also she is very emotionally dependent on me. This developed in the

late teen years and I am not sure how I could have intervened to prevent

this from happening but it is something for people to watch for in their

adolescents. It seems that many teens with DS either develop anxiety

issues or OCD tendencies. She has seen a psychiatrist for about 14

years and is on mediation for anxiety.

Does your daughter know she has down syndrome? If so when
and how did you tell her, if not why not?

As mentioned before she does know she has DS and has for many

years. I do not believe we ever had a sit-down discussion about it.

Certainly it was probably mentioned at every doctors appt. So it sure

would have been hard to conceal it. The fact that she had DS was

nothing that we ever hid, it is just part of who she was and is. She knew

or sensed that she looked different and learned slower than her peers by

about 2 nd grade and would often ask questions about it. I always

answered honestly and briefly. The higher functioning people with DS

are usually aware of their disability and understand its life implications.

The people with DS that are severely mentally handicapped or at the

low end of the moderately mentally handicapped most likely are not

aware that they have DS. Or if they know they have DS they are not

truly aware of their own limitations. Actually of all of her friends

with DS only one other person really understands they have DS. This

“understanding” is what I believe can often lead to anxiety and


Monday, October 1, 2012

2.5 Years Old

Long time without an update on my little man.  He is doing awesome. Since his birthday in April he has only had a few colds.  The worst was when we did mommy/me swim lessons which I loved.  He got sick a lot and I am wondering if he was aspirating the water because he drank a lot during lessons.  He did awesome and it was fun, but we stopped in September and will try again next Spring.
And since I posted in June about his beginning to walk he pretty much walked non-stop ever since that first video.  He is trying to master opening doors and thankfully he cannot.  Unlike Zac who would never leave our side, David will just take off.  He is starting a fast walk and it is not the most elegant gait, but it gets him everywhere.  We are working on walking on different surfaces, kicking, and jumping which are still difficult for him.  He rarely butt scoots anymore and will almost crawl under my legs like a tunnel, but still really hates crawling.

He is still a climber and falls off of the arms of chairs periodically.  He climbs up the step stool.  He climbs into the stroller.  He has no fear of heights, unlike my dear Zac who at 6 is still afraid of heights.

The two pictures above he is signing"color" "writing" which means "crayons". He now has over 100 signs.  We began signing last Christmas.  He is really good.  Sometimes you don't know he knows a word until he is listening to your conversation and signs a word you just said.  You might also notice he is left handed, he signs with his dominant hand.  So both of my kids and my husband are left handed.  I am right handed which makes teaching things a little difficult.
Just recently his speaking has begun to take off.  He will mimic everything.  He also will sign and speak the word at the same time.  We had a brief period where he would only speak words he didn't know the sign for.  I was considering stopping the sign language, but within two weeks he started saying the words he signs.  He will parrot most things you ask him to say.  I can understand most of his words, others may not be so fortunate. We are going to try Kaufman cards for speech therapy.  It is a method for kids who have apraxia (word approximations) the therapist thinks it might help him speak more clearly.

Books, books, books...his favorite activity by far.  Give him a toy and he will use it as a bat or throw it across the room.  Give him a book and he will go through each page or sign for you to read it to him.  He points to all the pictures and signs the pictures he knows.  We read every day.  I do flash cards with him once a week.  He watches a signing video every morning while I get ready for work.  I foresee an IPAD in our Christmas/Chanukah future most likely this winter.  I am not an apple fan, but when it comes to apps for special needs apple wins hands down (frown).

He loves balls.  Especially football.  Zac was exactly the same.  They love to play catch.  And I might encourage it a little as it is one of the few toys your are supposed to throw.
David attends a typical daycare, he is in the 2 year class room.  He loves it and the teachers and parents and kids love him.  He went through a biting phase for a week.  He was getting another tooth and it was really bothering him.  Tooth count is 4 molars, 3 top front teeth, and 2 bottom front/side teeth.  His teeth look weird, but he won't let me get a picture.
Eating is not happening. 100 percent tube fed, and lately doesn't even want to try food for me. We are increasing tube feeding to gain some weights (he needs to gain 4 pounds he is only 23 pounds). We need to then evaluate what is going on with his swallow. More testing may be in our future and possibly a therapy called vital stim. Until his weight is where it should be no aggressive weaning is happening. I keep hoping he will just start eating like the walking and the talking (maybe I am crazy).
Heart is perfect at the last appointment. No visit for 1 year. No holes and the pressure is in the normal range. 

My sweet 1st grader, Zac.  He can't even get his own picture with his favorite dog shadow without David sneaking in.  David loves his big brother.  Unfortunately, he like to throw Zac's toys and hit Zac with a bat.  Zac has endless patience and loves David to pieces.  He loves to read him books and wrestle with him on the couch.  He is an endless worrier and David's climbing gives him a heart attack.  The acceptance of a sibling is a good lesson for grown ups.  David is the only brother he has and he doesn't hang out with other 2 year olds so this is all he knows.  Zac thinks David is awesome and he is quite proud of him.  I am raising some good people for this world we live in.....
I love me some Zachary, as he likes to be called.  He is in 1st grade and he is doing awesome.  He is on track to great things.  He loves school, everything about it.  And he has just started his first sport, flag football.  He is not very athletic, but he is having a blast.  I think he is absolutely adorable, he is in that awkward stage of losing teeth every month.  He is 90 percent good kid and 10 percent annoying kid.  I am truly blessed.

Wednesday, August 8, 2012

Heart Surgery Anniversary

1 year post surgery

1 year post surgery

1 year post surgery

Day of surgery

4 days post surgery

2 weeks post surgery

6 months post surgery

Happy to have my boys

Monday, July 9, 2012

Picture Update - My Favorite Kind of Post

Hi Mom

Hip Hip Hurray

I Love to torment a sleeping dog....poor Hunter

First time playing weapons with the Big Guys

He decided his head needed protection.

Loves to put things away.....or hide things

Arghhhh....going to go destroy some towers.

New thing is standing on the couch.....give mommy a heart attack.

Painting with food...they call this therapy.

Mom taught me to clean my hands on my socks.

Checking out this Oreo.......

It's going in.....

If only I wasn't afraid to swallow.....the taste is great.

And I was awarded a pillow for sleeping....thank you Croup.