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.