Sunday, October 31, 2010

Happy Pumpkin Day!

A couple of weeks ago, we took Olivia out into our front yard under the maple trees for a Halloween photo shoot.  Daddy was photographer!
Oh Boy! Pumpkin Time!

This photo shoot is so exciting!

Are you sure this outfit doesn't make me look fat?

Maybe if I tilt the hat I will add a bit of pazazz to the outfit!

This is probably the best photo of me in my pumpkin suit!

This photo is not too bad either.

I am getting a bit tired of all the posing. Are we done yet?

Alright, I can give you some more smiles.

Still smiling...

Don't want my hat to blow away in the breeze!

Look how tall I am! I am bigger than the Daddy Pumpkin.
Last year I was so tiny that Mommy sat me on top of the pumpkin.  

Hello to all of my friends!
Happy Halloween/Pumpkin Day!

Saturday, October 30, 2010

Cutting Mom and Dad Down to Size!

(Blog post by Peter with some minor additions by Linda)

Well, apparently Olivia read yesterday's blog entry and decided to show those making medical decisions  (her parents and her doctors) who was in charge.  Actually, what happened freaked us out and still has us a bit worried.

Normally Olivia wakes up ready for action, bright eyed, and clearly indicating that we better get a move on it and get breakfast on the table. This morning, Olivia was a total rag doll. She was limp, listless and just seemed to want to be snuggled, and looking as if she could nod off to sleep. So not Olivia!!!! Trying not to panic, we decided to proceed with breakfast after we saw her interested in crawling after the cat's tail.  Maybe she was slow waking up for some reason.  She wasn't asking for food, but was willing to eat and ate her normal breakfast. That had to be a good sign - right?  However, instead of her normal animated self at the table it seem to take all she had to prop herself up.  There were glimpses of spark, followed by a blank stare.  Okay, we were still worried. Then we notice that her skin color was a little purple and her hands are cold.  Okay, now we are starting to freak out.  Still trying not to panic, we put a thick sweatshirt over her long sleeve shirt and that seemed to help.  Overtime she seemed to be more energetic, but would periodically slip back into listlessness.  She didn't feel feverish, but we took her temp and she had a low grade fever.  Eventually she seemed more like herself, but was low-tone and struggling with the teething all day long.  All in all, so very much not like Olivia. We have never in the past 18 months had her act this way.

We can think of any number of simple explanations that might have contributed.  However, all of those things have never resulted in her acting this way.  Maybe she just has a touch of some bug.  The last time she was that way was while she was in the NICU and in her early infancy days at home.  If it happens again we are definitely calling the doctor right away, or maybe heading ASAP to urgent care or the ER.

We will place our little one in the care of God for the night, praying that tomorrow will find her back to her normal self.

To help everyone get in the mood for Halloween, here is a picture of Olivia with our family of pumpkins.  There is a daddy pumpkin, a mommy pumpkin and a toddler pumpkin. Olivia seems to be showing us that, just like her daddy, this daddy pumpkin is really heavy.

Friday, October 29, 2010

What a little extra thyroid medicine will do!

Olivia gets her bad reading habits from me.
Surround yourself with lots of books and read them all as your  mood  dictates!
There is no such thing as too many books!
As I have mentioned before, Olivia was diagnosed with hypothyroidism at 4 months of age and has been taking medicine ever since. Hypothyroidism affects 80% of people with Down syndrome before they reach adulthood.  It is a major contributor to low cognitive function if left untreated, and also causes kids to be smaller and have less strength and endurance.  If treated appropriately, all is well!  Lucky for us, our first pediatrician knew to keep an eye out for hypothyroidism, and when she saw the warning signs at 4 months old, she ordered blood work to check. Some pediatricians might have waited until the standard yearly check.  It is not prudent to do this!  If they see symptoms, they should check right away.  The cognitive and physical development of the child is at stake! Too much to risk to just wait!

Olivia's latest thyroid blood test showed "normal" TSH and T4.  However she was symptomatic.  She was falling asleep by 9 am and then again by 3 pm.  She fell asleep quickly for nap and bedtime, but her sleep was fitful.  Olivia's gross motor development was struggling as she just did not have the strength that she needed.  Luckily, our new endocrinologist noted that her TSH and T4 were just barely normal and that Olivia was very symptomatic.  She took one look at all the facts and told us that we needed to increase Olivia's dosage. She explained that they don't like the numbers on the edge of normal, as that is not good enough to help developing children.

Olivia has been on the new dosage for about 10 days, and Wow! what a difference!  She can stay awake! She takes a little longer to settle down to sleep. Her sleep is more restful.  She started pulling up to kneeling at the sofa, exercise bar, and shelf, without any help whatsoever from us.  She finally got the "supported pull up to sitting from side lying"!  That one is a big deal!!!!! I have been working with her on that one since January! And she just could not put it all together, because of strength and because she insisted on back arching, and because she just thought it to be a ridiculous idea, because she was able to pull up to sitting by pulling up with both hands, so why am I asking so much of her and wanting her to do this trick.  But now she can do it and she loves doing it!  These two developments took place in the past two days! She is also saying Mama!  Glory Be! And she was saying DaDa a bit just this late afternoon. I also caught her saying Ball, just as plain as day!  In the past few weeks, she had quit talking (almost) and was only signing.  Oh! And the stuff she is learning these days!  It is like an explosion of sheer genius!  Ok... I exaggerate a bit!  But you get the idea! She is amazing us these days in comparison to what had been going on prior to the increase in her thyroid medicine.  Oh, yes! And she is now a pro at getting in and out of sitting for the past week. Add that to her crawling and she can now play happily by herself for as long as a half hour!  She is so neat to watch play! She is so inventive and such the scientist!  And after 18 months of being so incredibly hands on with Olivia all the time, it is so nice to sit back on the sofa and watch! (and drink a cup of tea that is still warm and look at an entire Michael Olaf catalogue in one sitting!)  Oh! And with the increased strength, she can really get some air on that spoon when she throws it!  :-)

Thursday, October 28, 2010

Look Mom! No hands!

Olivia is getting a bit full of herself!  She thinks she is the world's best self feeder.   NOT!!!  I would call this stage of self feeding the supported spoon stage.  Because if we are not keeping our fingers on the end of the spoon, she is redecorating the walls with her dinner.  Some meals she is really interested in self feeding. And then other meals she is very lethargic and apathetic about the whole endeavor.  I would have to say that is par for the course for Olivia in learning something new.  So as the doctor says, as long as Olivia keeps progressing in typical Olivia fashion, then there is nothing to worry about.  In some number of months we will be amazed at her ability to sit and feed herself without us supporting the spoon or fork. She is very good at feeding herself with her fingers no matter how mushy the food.

I am working on Dexterity with Olivia.  We are trying to isolate the index finger.  Kids with Ds tend to point with their thumbs. So we are trying to get her index finger activated to point instead.  I have pulled as many toys out as I could find that she can poke her index finger into.  The best thing is a wood bead block. She loves to put her index finger in both ends of the bead block and move it around.  She also will hold one bead in each hand, with her index finger in the hole and bang them together! Banging is good fine motor work at this point!

Again, thank you to everyone who supports us in raising Olivia!  Olivia has been a great people filter! The great amazing wonderful people shine like stars, and then (sadly) we also see the less than fabulous people disappear into the wood work.   It takes special people to appreciate someone else's special needs child!  Thanks for being a special wonderful sign of God's gracious goodness in our life!

Tuesday, October 26, 2010

Olivia Befriends Oprah

Olivia and I were at the podiatrist's office today, when Olivia sees Oprah across the room. Well, of course Olivia waved and smiled and was eager to go see her and chat.  So, we went across the room and Olivia began her typical befriending process. Oprah just smiled and smiled.  This was Olivia's first encounter with O Magazine!

How was your weather today!?!?!  Ours was crazy!!!!!  Soon after we left home, the tornado sirens and downpour of rain began.  Needless to say, I got very wet!  But thanks to the stroller rain cover, I kept Olivia comfortable and dry and out of the strong wind.  When we left the office, the sirens started as I was getting Olivia into the car.  Of course it was still a downpour and I was cold and drenched.  I phoned Peter to get his opinion about what I should do. Go back into the office or head home.  Long story short, I turned the seat heater on full blast, said a prayer and headed home!  The nice warm shower and warm clothes and soup that awaited me at home never felt so good! Olivia took a 2 hour nap.  I regrouped and the rest of the day was sunny, but still windy.

Monday, October 25, 2010

Breakfast of Champions!

What is for breakfast?
Oh Boy! Rice Chex with Milk!  Who would have thought of  cereal and  milk for breakfast! Way to go Dad!

Oh! This is going to be Yummy!

Almost in my mouth...

Oh! I can taste it!

Ummm!!!! Yummm!

Delight!!!! Absolute delight!!!

Olivia is working diligently on self feeding with a spoon.  She has become very good at getting the spoon to her mouth and knowing to go back to the bowl for more. Tonight at dinner she ate nearly her entire dinner with her spoon, although she ate her cauliflower and daikon radishes (large mild radish, looks like a big carrot, thought of as a Japanese vegetable, we slice them and steam) with her hands.
We are using the Boon bowl with suction cup and the Nubby spoon.  It is not beautiful (as my Montessori training predisposes me towards choosing), but it works and that is what Mommy has to just accept.  I have some beautiful silverware  for toddlers and some attractive plates, bowls and placemats that I have used with typically developing children of this age. But Olivia has motor control issues, and so the bowls, and spoons tend to go flying.  The placemat would surely be seen as a Magic Carpet! Sure to fly! The important thing is that she is having success!  We still need to hold on to the spoon, so that it doesn't go flying, but I think that as we keep working on grasp/ release,  give/ take, and placing that we will make better progress and be able to  not hold onto the spoon and have the spoon not go flying constantly.   

(I have gotten used to the fact that Fisher Price and Playskool, Leap Frog and Vtech make some great toys that really are what Olivia needs, so I think that I will cope with our table settings also!  Silly Mom!)

Sunday, October 24, 2010

Playing with Crayons

It is harder for children with Ds to learn to use crayons and do most fine motor activities do to sensory issues, neurological issues, motor control, hypotonia and ligamous laxity.  Some fine motor development that one would expect to see in a 12 month old or younger, one may not see in a child with Down syndrome until closer to 4 years old.  There is great variability amongst children with Ds in their development of fine and gross motor skills, as each child with Ds is unique as to what extent the factors I mentioned above are issues for them.  I have seen children with Ds with truly amazing moms who are unbelievably devoted to working with their child, and yet they are still struggling.  It  is humbling for me as a "preschool teacher" to be working tirelessly with my child and not see results.  I am so grateful for the people in my life who cheer me and Olivia on, even when we are not achieving the desired results yet.  Some days I could just cry! But the people in my life who cheer me on make all the difference.  Children with Ds struggle with grasp/ release and motor control and this causes a lot of throwing and "clearing off the table".  It gets better over time, but lasts incredibly longer than with typical children. Our kids are not being "bad" when they throw. They are just still with out the needed motor control/ grasp/release development. Rest assured we work on these issues tirelessly.  Here is a video of me working with Olivia with crayons.  (Marcos, thanks for the picture you made, and Olivia has a picture for you that she will send soon!  XOXOXO)

Saturday, October 23, 2010

Today's Guest Blogger

My youngest cat, Rory, is sleeping in my computer chair. Apparently she is blogging today.  I think she wants to tell you that she really loves her little sister, Olivia, and doesn't even mind it if Olivia pulls her hair.  But now that Daddy Peter put up the baby gates, Rory can sit in her basket on the other side of the gate and watch her little sister in safety.

Friday, October 22, 2010

Brushing Teeth the Montessori Way

Because of my Montessori training I have always cringed (and been nearly ready to contact CPS) every time I hear a dental hygenist recommend placing child on the floor, straddling them, holding them down, prying open the mouth and brushing the teeth.  Simply not the way I was trained to approach children.

Here is a video of my chosen method. I follow the child, keep it fun, give choices, give respect and teach independence.  Hopefully, Olivia will continue to find brushing her teeth a good thing.  So far she enjoys it.

Thursday, October 21, 2010

Ligamous Laxity continued

This is the photo that I wanted to upload yesterday.  This is Olivia's natural way to pull up to kneeling.  Problem is, it doesn't work.  Study this photo, then try to get up to kneeling using her method.  Not too easy!?!!?  So I continue to work with her (continue, meaning we have been working on this for months) on getting to kneeling from a sitting position (sideways to the shelf) or from a quadruped (up on all fours) position where she picks up one hand, places it on the shelf, picks up the other hand, places it on the shelf and then moves her knees in and then under her.  She can get to kneeling both ways.  We usually do it the sitting way, but recently she has an interest in moving up from a quadruped position.

Oh! Also!  Did you notice that in this photo her head is nearly touching her tush!  Can you do that!?!?!? Another example of ligamous laxity.

Olivia is a crawler! She can get anywhere she wants to go and can get there faster than fast!  Just ask the cats' tails!  She is getting in and out of sitting, albeit the wrong way when I am not there to support her to do it correctly.  But all this movement has increased her independence and has increased the need to get the childproofing completed!  Do you know the difference between crawling and creeping?

Wednesday, October 20, 2010

Ligamentous Laxity

"Almost all of the conditions that effect the bones and joints of people with Down syndrome arise from the abnormal collagen found in Down syndrome. Collagen is the major protein that makes up ligaments, tendons, cartilage, bone and the support structure of the skin. One of the types of collagen (type VI) is encoded by a gene found on the 21st chromosome. The resulting effect in people with DS is increased laxity, or looseness, of the ligaments that attach bone to bone and muscle to bone. The combination of this ligamentous laxity and low muscle tone contribute to orthopedic problems in people with Down syndrome."  (Len Leshin, MD, FAAP)

Olivia has this!  And you may have noted in other photos that she seemed extremely "double jointed" or extremely "flexible".  This does cause her some trouble in learning gross motor skills, because her arms and legs don't know to go the "natural right way".  At first it seemed odd to be working with a baby whose arms and legs etc, wanted to go every which way, but through lots of therapy, we are more well versed in how to help support her body to go the right way, and she has learned in some gross motor activities to get her body to go the right direction. In addition, gaining muscle strength around the joints helps get the joints to act more "normal". 

I will write more tomorrow about this. Maintenance on Blogger is keeping me from uploading the photo that I want to post and write about some of her problems in learning to pull up to kneeling from her tummy.

Tuesday, October 19, 2010

Endocrinologist appointment

After having Olivia'a blood tests performed nearly a month ago, we finally got in to see the endocrinologist today. The pediatrician's office had told us her numbers were normal. Well, they were just barely normal!  Her symptoms were in fact because she needed a boost in her thyroid medication for hypothyroidism.  She has been so very tired lately. Less and less endurance everyday. Constipation. Tummy aches resulting in disturbed sleep and fussiness.  And I imagine that being tired all the time made her fussy too.  We were so relieved that all of her symptoms can be explained by hypothyroidism that needs a medication adjustment.  Hypothyroidism hit Olivia at 4 months of age and will hit 80% of persons with Ds by adulthood.  Untreated hypothyroidism is a major contributor to mental retardation.  We have not noted less intelligence in Olivia than we would expect. But she has become increasingly unmotivated to do "harder work"  that I know she is capable of when she has the energy to concentrate.  I think that this uncontrolled hypothyroidism is why she has been crying at the drop of a hat. She is just always tired.  And sometimes when we adults are tired/ exhausted we just want to cry, too!  Hopefully we get our Olivia feeling better soon. Bad news is that she needs blood work in 4 weeks, then 3 months, then 3 months later.  No fun!

Monday, October 18, 2010

So Smart!

 On a Sunday afternoon Family Walk at the River Walk by our home.

While on our walk, Olivia, in keeping with her true-self, smiled and waved at fellow walkers.  It is nothing for her to see someone at a distance and keep eyeing them and waving until they stop and interact. It is wonderful to see the smiles she puts on so many faces.  Just like she puts smiles on our faces!  But she likes to keep things at an acquaintance level with strangers.  No high fives for strangers.  Just talks to them, waves and smiles.

One older couple stopped to talk with Olivia. Olivia is a great conversationalist these days now that she has become a big fan of signing.  The older woman, impressed by Olivia's abilities, asked how old she was. 17 months! She said, Wow she does great!  Then as she started walking away, I said, Did you realize Olivia has Down syndrome?  She stopped, looked surprised, and came back to talk some more. Wow! She said! Typical kids don't even do that!  OK... Proud parents please stand up! So we, grinning from ear to ear in total pride, continued our conversation and dispelled the myths about Down syndrome.  We wonder if Olivia has a future in politics. She is friendly and loves to kiss babies!  And she is so smart!  Yes! We are so proud of her!

Olivia uses her signing with me all the time. Especially to tell me what SHE WANTS! And she can be persistent if I am taking a while to do what she wants. She woke up from nap and let me know she was both thirsty and hungry.  She lets me know when she is tired.  She lets me know when she wants to listen to music. And much more!  

Sunday, October 17, 2010

What Does Down syndrome "look like"?

I am still feeling under the weather with an upset stomach and headache having joined the list :-(
More cut and paste. 

How did the doctors know my baby had Down syndrome?

Many babies with Down syndrome have certain physical characteristics which are common in Down syndrome. These signs occur in up to 80% of all cases. Individual characteristics are often found in children without Down syndrome but the Down syndrome child will have several. These traits are:
  • the eyes have an upward and outward slant
  • there is a fold of skin on the inner side of the eye (epicanthal fold)
  • the eye slit is narrow and short
  • small, white patches can be seen on the edge of the iris
  • the face has a flat appearance
  • the head is smaller than average
  • the soft spots on the head (fontanels) are larger than normal because the baby is growing more slowly
  • the ears are smaller and lower-set
  • the mouth is small and the lips are thin which leads to the tongue sticking out because the inside of the mouth is smaller
  • the neck appears slightly short and loose folds of skin are seen at the back and sides (these go away as the baby grows)
  • the legs and arms are short in relation to the body
  • the hands are broad and flat with short fingers, the little finger slants inward, and there is a single crease across the palm
  • the feet are broad with short toes and there is a larger space than normal between the big toe and the other toes
  • there is poor muscle tone (hypotonia) and loose-jointedness (hyperflexibility)
  • reflexes tend to be weaker and the cry is weak
If a child has six to ten of these signs, the doctor can be almost certain that the child has Down syndrome.
What effect will these physical characteristics have on my baby's health?

Children with Down syndrome can be prone to breathing problems due to the smallness of the mouth and the poor development of the sinuses. This can lead to mouth breathing which will encourage the protruding tongue often seen in children with Down syndrome. The protruding tongue in combination with low muscle tone in the muscles of the face can cause nursing problems since the child with Down syndrome may have trouble getting a tight seal on a nipple. The baby may also have a weak suck due to hypotonia and may later have trouble eating solid foods. A therapist can help with this problem.
What is hypotonia?

Low muscle tone or hypotonia, is very common in children with Down syndrome. Their muscles feel floppy. Although the degree of hypotonia varies from child to child, it generally affects all muscles in the body. Hypotonia may contribute to delays in motor development but with the help of a therapist, improvement in your baby's motor skills will be achieved. Therapy for hypotonia should begin within the first few weeks after the baby is born. A therapist can show you techniques (such as holding the baby in a certain way) that can be beneficial to your baby's development. Low muscle tone can effect eating and speaking skills so a speech therapist should work with your baby. Hyperextensible joints can also effect your baby's development. Your baby's joints may be very flexible. This flexibility can make it difficult for your baby to be stable enough to learn how to walk. Professionals such as Occupational and Physical Therapists can help alleviate these problems. Early intervention is the key.

Saturday, October 16, 2010

What is Down syndrome?

I am not up to par today. So I am cutting and pasting some information on Down syndrome:

What is Down syndrome?

Down syndrome is a genetic condition that occurs in approximately one in every 733 live births in the United States. It affects people of all ages, races and economic levels and is the most frequently occurring chromosomal abnormality.  The majority of people with Down syndrome have a third copy of chromosome 21 in all their cells, instead of the usual two.  This results in the person with Down syndrome having 47 chromosomes in each cell instead of the usual 46.  This additional genetic material alters the course of development and causes the characteristics associated with the syndrome. Down syndrome affects over 350,000 people in the United States alone. Recent advances in our understanding of Down syndrome have resulted in dramatic improvements in the life span and potential of those who are affected. Today, our challenge is three-fold: to increase understanding of Down syndrome and the true potential of those who have it; to advocate for full inclusion for people with Down syndrome; and to fund scientific research into the cause and treatment of Down syndrome.


Chromosomes are thread like structures, which are in every cell of the body. Each cell has 46 chromosomes arranged in 23 pairs; each pair of chromosomes carries genetic information. Down syndrome affects the 21st chromosome by the presence of three chromosomes instead of two. The scientific name of Down syndrome is Trisomy 21. The extra copy of the 21st chromosome is what causes the characteristics of Down syndrome. These characteristics very in each individual with Down syndrome, they are present in visual characteristics, developmental delays and different health issues. For more information on all of these please refer to our different links listed below.
Chromosomes in a Typical Male
(In Females, the last pair of chromosomes would be two “X’s” instead of “X” and”Y”)
Chromosomes in a Male with Down Syndrome

Friday, October 15, 2010

Friday Surprise!

I was going to post today about how we parents of children with Different Abilities have to deal with so many misguided, arrogant, uneducated opinionated people.  I was ready to try to set those with misconceptions "straight" about parenting a child with Special Needs.  But, thanks to following Father Hesburgh's lead, I pray daily for the Holy Spirit to Come to me.  And so, just in time, the Holy Spirit intervened.  My husband says that one can never change the hearts and minds of those who are the misguided, arrogant, uneducated opinionated people anyway.  Surely he is right!  I know that although I had been studying Down syndrome independently for 4 years before becoming Olivia's mommy, I still had no idea what it was going to be like to be her parent. It is very different than I thought it would be, but at the same time that it can be more difficult in a variety of ways, I never could have imagined how joyous so many moments are.   So how did the Holy Spirit intervene?  I have been trying to get Olivia to do more than just sit in the bathtub, and today she decided to get onto her tummy and play!  And kick! And "swim"! And crawl forward!  I got plenty wet! But it was the perfect end to a day when I had been feeling rather "down" rather than "up" about how some people were talking and acting.  Come Holy Spirit! Give us Life!  Give us Love!  Strengthen us to serve the Lord!  I still have a long way to go to be the person God wants me to be, but I think that Olivia will help me learn the ways of the Lord better than I could have ever learned them without her in my life!

Thursday, October 14, 2010

What being Olivia’s father has taught me …

Thanks to Daddy Peter for this wonderful Blog Post:

What being Olivia’s father has taught me …

- Stop! and love saying “flowwa” every time you see a picture of a flower

- Celebrate the little things that really matter

- Take life at its own pace, rather than rushing to get no where

- Everyone is equally important and valuable, just as Horton Hears a Who taught us

- If they don’t like you for who you are, then move on to someone who does

- It is just as important to enjoy the process as the accomplishments

- It is hard to be happy with a wet diaper

- Teething is a real bummer

-" It’s okay, don’t worry about it"

- Smile and wave to everyone … it makes them and you feel better

- Greet people like you are excited to see them … even if they only momentarily left the room

- Sleeping is a good thing when you are tired

- If you get worn out, just put your head down and rest

- Rubbing your tummy is useful to letting Mommy and Daddy know I am hungry, and if that doesn’t work screaming usually does

- Most important – kids just need love and you can’t spoil them with too much love


Wednesday, October 13, 2010

She gets around...

Today is my birthday, and opening gifts with Olivia gave us a preview of Christmas. Although 5 months ago, when it was her birthday, she sat quietly and did not participate in the gift opening, she was very much into all the paper and boxes and excitement of this event. The cats love to open gifts, too, so they were around and Olivia would at times "endanger" their lives. The cats need to learn that Olivia is not to be trusted and that Olivia can go from 0 to 60 MPH when she is motivated to get something. Her favorite motivator is the cats. The Christmas tree most definitely needs a secure childproof home, complete with a security guard! Ds Moms have been telling me, "Just wait until she starts moving!" Well! Welcome to "Movement World" to us! Watch this video! The child can move! She may just Army Crawl herself across the street to the recruiter! The Army's secret weapon! Babies with Ds!

Tuesday, October 12, 2010


Yes! You were right if you guessed that the two items on either side of the Apple wireless optical mouse are Olivia's orthotics. I have to admit that when I heard that Olivia needed orthotics I thought. "Orthotics are for old people (like me)" Not for little children. But the podiatrist assured me that "baby orthotics" are cute. Well, they are cute in their own way. And they are ever so tiny. Surely not as tiny as the hearing aids that kids lose, but tiny still. I don't think the cats will walk off with them, but I will be careful.

Olivia's needs orthotics because she has flat feet and pronation. Olivia seems to love her orthotics. I feared they would be uncomfortable, but no! She has wanted to stand constantly today and her endurance for standing and her form in standing is much improved. I would have to say, the orthotics seem to be worth the $300. I don't know how we will feel about a $300 price tag every 9 months to replace them, but Olivia is worth every penny!!!!!!

Monday, October 11, 2010

What Do You See?

Comment please: What do you see in this photo?
(This might be my Tuesday Post. But then again, I might have something to say. It is hard to post everyday! I have not been posting Ds facts, because so many other Blogs are doing that wonderful service.)


I just had to share these photos of Olivia kneeling. She has decided that she wants to pull up to kneeling at the sunroom window. She needs just a small boost to get there. Once there, she loves to look outside. It is seeing things like this that remind us that the seemingly impossible, is possible. We just need to keep working hard, persevering, and believing in Olivia!

Sunday, October 10, 2010

The Letter W

Today's post is sponsored by the letter W!

Today was a


Wonderful day

for a


The three of us took a long afternoon stroll on the RiverWalk. Thanks to the extension of the RiverWalk this summer, we can now walk down the street and get to the Walk.
The newest part near our house is wooded tree lined, and with the Autumn Colors it was absolutely gorgeous! ...sorry, no photos :-(

The rest of the day was spent with

Washing (notice another W)

I Washed clothes, toilets, showers, bathtubs, floors, tables, shelves, etc.... you get the idea. I cleaned house and caught up on laundry.

Saturday, October 9, 2010

Happy Birthday Grandpa B!

Olivia spent the day celebrating my Dad's Big Birthday!

A fun time with family! (But only napped in the stroller on two walks, so our Little Miss Olivia is a tired baby! )

Friday, October 8, 2010

Puzzle video

Therapy Progress

Olivia surprised me this week by her first success with a puzzle. She can take the circle in and out of the puzzle!

Olivia has been able to put a wooden egg into a wooden egg cup, and nest small wood bowls for some time, so I think these were preparing her to do this circle puzzle successfully. This evening one piece puzzles from Nienhuis arrived. I cannot wait to give them a try!

Other progress this week includes eating. She is making strides in self feeding. Feeding by hand is going great! Complete mastery! We are still in the beginning stages of fork and spoon feeding, but I am definitely seeing progress. She can pick up a fully loaded fork from the plate and easily put it into her mouth and then put it back down again. Of course, she can take a fully loaded fork and thrust it to the ground, and also can take an empty fork and fling it. Spoon feeding is coming along finally after a slow start. She can pick up a fully loaded spoon and take it to her mouth and empty the contents into her mouth. She can also do the throwing to the floor as with the fork. When she has emptied the spoon, she can put the spoon back into the bowl. She can also throw it on the ground. Rome was not built in a day! Our favorite practice snack for spoon feeding is rice krispies with baby fruit puree or applesauce. It works great! Sticks to the spoon, but is still bowl and spoon worthy.

Physical therapy work is going great! She needs minimal support to pull up to kneeling, and only a bit more support to get to standing. She loves to pull to kneel by the sunroom windows and look outside to admire her outdoor pumpkins. She also is really enjoying pulling up on her exercise bar with mirrors. Of course her favorite exercise equipment is mommy! Loves to pull up on mommy, and mommy has the stretched out shirt necks to prove it!

Thursday, October 7, 2010

I Know What I Want! (Communication)

I have invited Olivia's family and friends to send me a blog post this month (to make my 31 for 21 job easier). My wonderful husband, Daddy Peter, sent me this great blog post about Olivia communicating "What she wants!" Thank you Peter!!!!! XOXOXOXOX !!!!!

Olivia is definitely learning how to communicate what she wants and doesn’t want. She has begun to grab our hand or finger and move it to what she wants us to do. For example, she finds it quite funny and enjoyable for us to tickle her feet. If we stop, she will move our hand back to her feet to tell us to do it again. The flip-side is that Olivia knows what she doesn’t want!! If you sit down to read and you pick up the wrong book, she will, in no uncertain terms, let you know. It can be a process of trial and error until you happen upon a book she is interested in. When eating, if you put a piece of food on her tray that she doesn’t find desirable, she will pick it up and unceremoniously drop it onto the floor. It is encouraging to see her develop interests and preferences, and learn how to communicate them.


Tuesday, October 5, 2010

Visit with Olivia's Birthfamily

This afternoon, we had the wonderful opportunity to enjoy some time at the Lake with two of Olivia's sisters, Olivia's birthmom and her birthdad. We are so blessed to have an open adoption for Olivia. At first we certainly had to learn how to do an open adoption. There are no clear directions on how to do this. I think that the best way to describe how I feel about Olivia's birth-family is LOVE of course, but to be more specific, I feel that they are extended family. And they are the sort of extended family whom one feels very comfortable around, has fun with, enjoys, and looks forward to seeing. Visits always seem too short. When we first thought about adoption, we did not know how it would be to have an open adoption, but we like it. I don't know if all open adoptions are as comfortable as ours is for us, but all I know is that I thank God for the gift of such a wonderful addition to my life. An addition of many people who I now call my family! I also feel such gratitude that they chose us to be Olivia's mommy and daddy. What an honor! We are so grateful and honored! Everyday I think of her birthfamily, and everyday I ask God to bless them abundantly!

Monday, October 4, 2010

Pumpkin Time!

Daddy Peter came home the other day with three pumpkins: A Daddy, A Mommy, and a Baby O Pumpkin! He also brought home this wonderful sensory experience for Olivia. You can tell that his Mother and Sister (and wife!) are all Montessori Trained! We have been working on the sign for Pumpkin and have been working on saying Pumpkin, over and over and over and over and over and over again. Today she saw these sitting on the end table and banged her hands together in a close approximation of the sign and said "PPPPPP". I signed the correct sign for Pumpkin and said Pumpkin, Pumpkin, Pumpkin as I went to get these off of the table and give them to her. She loved feeling, tasting, throwing and in general having a wonderful sensory experience of Pumpkins and gourds. I would occasionally signing Pumpkin and saying Pumpkin. And occasionally she would say "PPPP" and bang her hands together. The correct sign for Pumpkin is more of a flicking the middle finger on the top of the hand as if one was testing to see if a pumpkin is ripe.

Sunday, October 3, 2010

Buddy Walk Hangover

Olivia had a tough time going to sleep for the entire night last night. Between the lack of a nap, the excitement of the Buddy Walk and her teething, it was a tough night. Today she has been a bit cranky from the teething and a bit wild and looking for a party from the Buddy Walk fun. She was more interested in "playing around" and being loud during Mass this morning than being that sweet little baby with Down syndrome. She still was smiling and waving at everyone all during Mass, but she was a bit more "vocal" when no one was interested in "playing" with her. But our dear parishioners were very encouraging after Mass that it was OK that Olivia was a bit loud and that she was welcome there whether she was quiet or loud! Bless them!

Here is Uncle Doug, my big brother, playing with Olivia yesterday at the Buddy Walk.
Here is Olivia doing "Patty Cake" for Mommy and Grandma B. (my Mom!)
Here is Olivia doing "motorcycle" for the crowds.
The Buddy Walk has a band and a stage and after the Walk and lunch the kids with Down syndrome get up on the stage and dance and join in the band. One older man with Ds played the drums, one young lady with Ds sang some awesome Creedence Clearwater Revival!

Olivia is waking up from a good nap. Hopefully that has helped return "happy baby" to our house.