Ups and Downs of O

Children's Museum

2012-02-04T12:23:00.000-08:00

Now that Olivia is walking EVERYWHERE! we are beginning to check out GREAT places for kids. This is the Center for History in South Bend.

Olivia had a great time exploring and walking everywhere.

I think that right now she just loves wide open spaces to walk.

Olivia kept asking for the swing, which she loves riding on at physical therapy. She must have thought this was a new therapy place.

Old and New Photos

2012-02-02T11:27:00.000-08:00

These are some old photos that I found on my iPhone

Taken this summer: Olivia likes to look at her books.

Summer 2011: Hard to believe that pulling to standing and standing against her bar were a real task at that point.

Summer 2011:
Olivia's first success at standing independently came from propping on this slide then pushing herself to stand.

Summer 2011: Loved her long walks in her stroller

All Smiles!

Our favorite place to walk. The new section of the River Walk

Cute!

Bathtime!

Olivia is a good tooth brusher!

Glasses

Dr Seuss and IPad. All is right with the World!

Catching a few ZZZs

Messy play!!!!

Cute!

Exhausted!

Taking a break at Therapy

Grocery Shopping with Mommy

Walking outside

Walking Outside

Shopping

I got the box and helped myself!

Yummy yummy cereal!

Water, Pom poms and Puppy

2012-01-26T12:58:00.000-08:00

I am giving Olivia a chance to practice sponge squeezing. She is not too good at squeezing, but she is improving. This is such an easy activity for typical two year olds. I was surprised how even squeezing a sponge has to be taught with great effort and even this is a sensory issue. But she is making progress. The OT is so impressed with the progress I have made with Olivia in her Sensory Processing Disorder in the past year. I work really hard at it! Nice to hear the compliment from the OT. The PT has commented about how great I have done at getting Olivia to be more outgoing and social and adventuresome. Again. It seems that we special needs moms get so much criticism even though we work so hard, so when I get the rare compliment it means so much and keeps me fueled. This has been a tough week with my husband in the hospital with an ulcer. I kept life even keel and happy and productive for Olivia in the midst of my worry. Of course only to hear criticism. I have had many conversations with Adoptive Moms of kids with Ds. We all have the same reason for adopting: A call from God. We really cannot explain it, but once God planted the idea in our heads we could not rest until we had that special child in our arms. It is not easy raising a child with Ds, but we hear that whisper of God saying YES this is my will for you. One mom told me before we adopted that we would receive much praise and much criticism for adopting a child with Ds. And it is true, It is still hard to hear the criticism, but I know that God's will is more important than the critics. This Sunday my parents are going on a walk to support life. My husband and I feel that we have to defend life with our very lives. I think that was part of God's calling to us. Don't just say you value life. Raise one of my very special children!

This is one way that I set up the sponge work. Bowl with a bit of water. Small sponges and Elmo to entice her to stay focused and she will wash him too. Elmo is a big motivator. We know that our special needs kids need their motivators!!!! Once we found that Elmo motivated Olivia, we were able to get her to do so many things we were struggling with before! I wonder if we could open up our home study again and proceed to adopt Elmo!

Again with a Sensory activity. The Pom Poms are great! They have also motivated her to practice pouring and another grasp release activity. But we cannot leave them out unattended as she will put them in her mouth if no one is watching.

This Fisher Price Puppy has been her time tested favorite toy from Christmas. Grandma and Grandpa B hit the nail on the head with this one! It is so motivating to get her to move and dance and clap and move up and down etc! Her OT uses this toy and it has been great to own one ourselves. Olivia is still perfecting her walking skills so anything that motivates her to practice is awesome!

Olivia has finally mastered crawling up on to the sofa and turning around to sit then getting onto her tummy to get herself down safely. Again! I worked so hard on this one. It is a joy and celebration every time I see her do it! We work so hard for everything that we really appreciate it when we get it! I love the evenings when we can sit on the sofa and she brings us books and climbs up so we can read to her. Now that Daddy is safely home we can hope to have our missed family time back again. It has been so sad to have Daddy gone. It is the little things I missed when he was gone. I missed having him hold hands with us when we prayed, sitting and reading with us, dancing with us, group hugs, family time getting Olivia into the bath and kissing good night. So nice to know Daddy is under our roof where I can take care of him and kiss and hug him and know he is ok. I really missed him. I can handle keeping life going. But I really missed the little things of having my husband home!!!!! Stay well sweetie!!! I love you!!!!! I miss your presence so much when you are away. Love you!!!!!!

Life at Indoors in January

2012-01-17T11:27:00.000-08:00

We think it is time to get out the ball tent again. Olivia has been playing with all of her balls again.

All 250 of them! The nice thing is that she keeps herself occupied playing and experimenting with them for long periods of time.

We are working on blue and red these days. We are following the advice of so many who have worked with kids with Ds and presenting words early in her life. There are words she clearly recognizes like bear, ball and Elmo. She LOVES her cards with words and those she walks off with a happy grin so pleased that she has this wonderful prize! A word! She also is learning the sounds of letters. We use the bathtub stick to the tub letters when I teach them. She loves to hold an O or U and say the sound. I have tried sandpaper letters with her but her hand and fingers still just go very limp and she is very uninterested.

Olivia is working on wearing her glasses more often.

Olivia is a very happy child. (Except when she is not)

Another example of wearing her glasses in daily life.

We noted that we own the same Potty Seat as Elmo in Elmos Potty Time. We just now are watching this DVD and gearing up for the big event! She very quickly was excited to learn that Elmo uses the Potty and immediately looked at me and excitedly signed Potty! She now knows that even cool "people" like Elmo use the potty not just boring parents. She has been having fun with sitting Elmo on this potty seat. She let me set her on the closed big toilet while she was fully clothed. She has tended to be so cautious about new things that I just want to gear up slowly and get her used to the language and the various potties that we own around the house so that we don't start trying to train when she is scared of them. I am reading up on the best methods for training a child with Down syndrome. If anyone who has trained a child with Ds has any suggestions please pass along your experience. I am hoping that the bravery I am seeing in Olivia in walking will carry over to potty training. I have potty trained typical kids when I taught, but never a child with Ds.

Down syndrome Medical guidelines

2012-01-17T10:35:00.000-08:00

A comment led me to think that I should join the bloggers who have posted the link to the Medical Guidelines for people with Down syndrome. Hopefully if you click on that it will take you to the right place.

Olivia sees a young female pediatrician who tells us that she reviews the guidelines prior to her appointments with Olivia to be certain she is keeping up on sound preventative care for Olivia. At Olivia's 2 1/2 year old check up, her doctor said that it was time to screen for celiac disease. The gastroenterologist said that indeed it was time to screen but that doctors have to be careful in reading the results and knowing which tests to run because there are some of the tests that would not usually come back positive in a young child with celiac but would come back positive in an adult with celiac. The tests that always come back positive if a child has celiac came back significantly elevated for Olivia. The tricky thing is that if these tests come back negative that doesn't tell you much, because there is a high rate of false negatives. Olivia had positives so that made diagnosis clearly celiac disease. If your child is symptomatic of celiac then most definitely test!

We have heard that not all doctors are very good about making certain that they follow that guidelines and that parents need to know the guidelines, give their doctor a copy and keep making sure that the doctor is following them.

A Visit to Sister V

2012-01-16T11:36:00.000-08:00

It was such a joy to see Olivia walking at the Center (Motherhouse in Tipton)! She has not been willing to walk freely outside of home or therapy. But as soon as we arrived in Tipton I told her we were at Sr V's house and she took off walking.

She did so great walking up and down the halls! She also was being very friendly. She used to be friendly, but then this summer she got shy. Now she breaks the ice by signing CUTE and then laughing. Then she was showing off some of her other signs especially doing bunny ears for rabbit. In the dining room she kept signing window so that I would take her to watch the snow falling. Stopping at tipton was a real blessing on our trip.

Celiac Disease- "Yes, She's Got It" - Dr. GI

2012-01-16T11:28:00.000-08:00

We took Olivia last week to Riley to see a pediatric gastroenterologist because of celiac disease. This was the first available appointment. Kids with Down syndrome are to be screened for celiac disease between the ages of 2 and 3. Olivia was screened twice in November and her numbers indicated Celiac disease. When we were given a copy of her blood test results just prior to going to Indy, we were concerned that her numbers were not just slightly elevated but were significantly elevated. A bit of shaking in our boots in the days proceeding the doctor appointment. The GI doctor was very kind and comforting and confirmed that Olivia does indeed have celiac disease and talked to us about the seriousness of having her stay away from gluten in order to avoid intestinal damage. He also reassured us that a gluten free diet is healthy nutritionally but that he always has new celiac patients see a dietician. The dietician can help us learn how to keep Olivia away from gluten in hidden ways in processed foods. Even some grains other than wheat have gluten as the Physical Therapist was reminding me. We need to educate ourselves (and others who care for Olivia) fully in order to protect Olivia's small intestine.

We have seen positive results with Olivia off gluten. The pediatrician felt that taking her off gluten in November was a good way to go because Olivia was symptomatic and we had a 2 month wait to see the specialist. Olivia's strength is the main thing to strike us. The physical therapist could not understand why Olivia was not getting stronger to walk, but within weeks off gluten her strength improved remarkably and she started really walking! She has taken to amazing us at her endurance to walk long distances and carrying things and walking backwards, dancing and walking on soft mats at therapy. Her social-ness and bravery has returned also. It is so nice to see her once again so very friendly when we go out and about. But I noticed today that I have to keep a very close close eye on her because she sees someone she is interested in visiting with and off she goes in a hurry! The physical therapist commented today that Olivia has made progress in her walking so much faster than she usually sees in kids who have struggled so much to get to this point. She also agrees that it is the celiac disease that was holding Olivia back.

So, we do have to avoid gluten for Olivia, but the reward we get is that we have a strong, happy, friendly little girl!

Specs 4 Us

2012-01-10T05:06:00.000-08:00

I wanted to share this photo of Olivia sporting her new Specs 4 Us glasses. Her Fisher Price glasses are history. They never fit her face correctly because of her flat face and flat nose. They always slid down and were heavy, uncomfortable and never in the right place to aid her vision for very long. We had chosen the Fisher Price glasses initially because they are very durable. So there is value to them if they fit your child correctly. Our saintly RX Optical girls worked with us to get these glasses for Olivia. We are very pleased with the fit and have hopes that eventually she will take to wearing them on a regular basis. But just like peeing and pooping, you cannot force a child to wear glasses! Any person who wears glasses might remember that at first it felt odd to have glasses on their face. Same for Olivia, and she has no idea how to deal with the weird sensation. But hopefully, over time, she will get used to the feel and enjoy seeing!

And I love the look of these glasses! The little Librarian look, just like her Great Grandma B!

Gaining Independence

2012-01-02T07:48:00.000-08:00

Since Olivia has started walking, we have noticed so many wonderful changes in Olivia. She loves to walk, walk and walk some more. She has been so happy and full of laughter. She is gaining more and more independence and confidence. She also has developed an adorable "ice-breaker". She puts her hands on either side of her chin to sign "cute", smiles and then starts laughing. Everyone around her, of course, breaks into laughter with her. She gets such a kick out of getting others to laugh and smile. Quintessential Olivia !

Yesterday, we were at a large gathering of Linda's family to celebrate Christmas. Normally, in large group settings Olivia reverts to being a "cling-on" never venturing beyond Mom's protective wing. Yesterday, Olivia would walk away from Mom (yes walk, prior to the last few days Olivia didn't seem to realize she could walk other places than home and therapy), explore a bit, then return to Mom to touch base, and then repeat. She seemed to be having such a good time and was interacting with just about everyone.

Today at physical therapy, she was doing it again. Going across all the way across the room with her therapist, and then coming back to home base. Then Olivia asked to ride on the platform swing - three times. Olivia has always been intrigued by the swing, but refused to be put on it. Today, she looked like she rides on it all the time. The therapist was amazed at how well she was doing with everything.

We knew all of this would come with time, when she was developmentally ready. But, it was hard when people kept accusing us of being overprotective. We knew she just wasn't ready to spread her wings, and until then we were going to help her feel safe and secure. It was such a joy to watch her fly solo. What a way to start the new year.

Olivia and Her First Princess Doll

2011-12-28T11:02:00.000-08:00

Thanks to Aunt Becky, Uncle Mark and the kids, Olivia is enjoying her very first princess doll. She loved her right away and seemed to know just how to play with such a special little girl treasure.

Her own vacuum

2011-12-28T10:52:00.000-08:00

Thanks to Aunt Suki and Uncle John, Olivia can now vacuum with her very own vacuum!

Christmas Eve photos

2011-12-26T04:13:00.000-08:00

Just thought I would post a few photos from Christmas Eve.
For the midwest, it was a sunny mild weathered day. Sure a welcome relief!
Olivia loved her knit Christmas Eve outfit. We think she thought it was her Elmo Costume.

Silly Silly

2011-12-25T16:00:00.000-08:00

Olivia has had the worst case of the sillies lately. We keep trying to figure out who is giving her the silly juice. We hope you enjoy and maybe even laugh along.

Olivia is a WALKER

2011-12-23T12:54:00.000-08:00

Olivia has been walking for about a month. PT thought it would take another 6 months for her to get strong enough, but a couple weeks off gluten after her celiac diagnosis and she was off to the races. This is a longer video, because I wanted to share how long of a time Olivia can walk all over the house. She very quickly learned her way around the house and all its ins and outs.

Some new photos

2011-12-23T11:14:00.000-08:00

I know I don't post much anymore (reasons to many to list) hopefully I will do better in 2012.

Here are a few photos and some thoughts (Olivia is 2 1/2 now and is a walker inside the home but she has not yet generalized the concept of walking to other locations, except therapy).

Here is a typical dinner or lunch plate for Olivia. She is a healthy eater. She will eat nearly all on her plate. What you are seeing is pureed peas and green beans. She will not eat meat so we do this power protein puree. Peaches, steamed broccoli, canned organic green beans, cooked carrots. Then she will eat about a cup of dry Rice Chex cereal which we like because they are gluten free and fortified. (Olivia was diagnosed with Celiac Disease about 5 weeks ago. I will write about that later. The diagnosis was a God Send and her development has taken off in the past month!) She also drinks fortified Almond Milk with her meal.

Olivia loves her sand table (we use moon sand) and she loves putting it on the floor and "cleaning up". Funny how a toddler makes more mess when they "clean" than if they just left the mess. No, the vacuum doesn't actually work. But I sure wish it did!

We bought this two stepped step stool for bathroom handwashing. A small stool would have been disastrous at this point, but Olivia kept telling us she wanted to wash at the sink, so we bought this wonderful helper.

She still needs adult supervision so that she remembers which end is up.

The BIG smile indicates that Daddy did a really good thing in buying her this stool!
Independence! With help of course!

Olivia and her New Bike

2011-12-23T10:59:00.001-08:00

Mommy's Helpers

2011-11-21T07:59:00.000-08:00

Everyone knows that a Mommy's life is very busy and is a lot of hard work. Olivia and I wanted you to know that we do our best to be good little helpers ... We'll let you decide who is most helpful :-)

- Daddy and Olivia

Activities

2011-11-18T17:34:00.000-08:00

Here are a few activities we are doing at home these days

This is the Lucky Duck game and Olivia practices grasping with it. Taking ducks off the pond and either handing them to me or placing in basket. This seems to be helping her gain control over her cup and fork and plate. Much less tossing and more handing them to me.

We are trying stickers on paper, but it is still very hard for her.

These are counting bears but I am using then to encourage her to use a pincer or tripod grasp and place them into the small hole. She uses a palmar grasp a lot still.

We are talking about shapes. Here is one exercise we did with circle.

This is a sand table. At first she hated it! Now she loves to go up to it and play and scoop. We are using moon sand. Yes it is messy, but it took her all summer to get accustomed to playing in her sand box and I did not want to loose that sensory adaptation over the winter. We have sand all over the house some days. But we keep saying that sand box play makes kids smarter! We believe that! Children develop their brain through their senses.

This is a grasping transfer exercise. Two small bowls and some pasta. She likes to do this and is rather good at it.
She also likes to throw the pasta. But such is progress.

Again encouraging pincer grasp. Putting penne pasta into the large hole of a salt shaker

Gee! Guess what! Pouring! We use pasta. Beans and rice go right into her mouth and water gets dumped to the floor immediately.

Again encouraging pincer grasp with pasta into a small hole in a mustard jar. She also likes to put the cap on and off.

This is her practical life box. I just have some kitchen things in it and she loves to explore.

This is a better photo of the Lucky Duck game.

This is a splurge! A zipper dressing frame from Neinhuis! I don't buy much at all from them but I really like three of their toddler dressing frames and could not find a comparable else where. She will be using these for some time to come as these activities are tough ones and so very important.

This is how I have one shelf set up for her to choose her work and put things back. I don't know if you can see the bristle blocks and duplos. She likes to work with them taking them apart mostly, but it encourages her to strengthen her hands and use them. With Ds the hand work is tough! I am always thinking of new ways to get her to use her hands. I welcome suggestions!!!!!

Walking & Squatting

2011-10-28T15:13:00.000-07:00

Daddy made this neat video.

Prenatal testing lies ...

2011-10-23T07:14:00.000-07:00

or, at best, is incomplete. Before Olivia was born, we knew she was going to have Down syndrome. That meant, of course, that she was going to be sweet, smiley and a perfect angel - right ?!? What they didn't tell us was that she was also going to be afflicted with "being a 2 1/2 year old." How possibly could the testing fail to detect that and warn us !?! Yesterday, we were darn close to getting kicked out of Babies'r'us and Toys'r'us for disturbing the peace. Yes, despite prenatal testing, we have a 2 1/2 year old.

We are investing in yellow caution tape to wrap around ourselves when we go out in public :-) You might want to buy stock in the companies that make the stuff.

- Daddy and Mommy

Early days of walking video

2011-10-08T16:00:00.000-07:00

Helping our children in a tough world

2011-09-04T10:18:00.000-07:00

I thought this was good advice in helping to prevent our children from becoming victims of sexual abuse. We see that Olivia sets boundaries with people, yet people try to force us to make her break her boundaries. We have to put protecting Olivia above the feelings of others. Adults need to understand that helping Olivia to believe that she can protect herself for her whole lifetime begins now. Especially for a child with cognitive impairment who is going to have a hard time protecting herself.

Ironically, we also contradict ourselves at times by confusing our children or denying them the boundaries and safeguards we gave them for their protection. For example, we tell children it’s their body, yet we force them to hug and kiss a relative (yes, even their grandparents or aunts and uncles).

Though this may be our cultural custom—to kiss and hug upon greeting or departing, it instills in children the idea that it’s their body but they have no rights and no boundaries when it comes to relatives. And since most children are abused by non-strangers, we are opening the door to possible abuse.

Instead of forcing the child to give hugs and kisses when they don’t wish to, explain to the adult that you are teaching your child to set boundaries for themselves and enlist their help.

August Photos

2011-08-23T08:16:00.000-07:00

This Summer has been eventful :-) and so I have not had the opportunity to BLOG.

My dear husband moved his home office and moved my computer also this weekend and now my computer is where Olivia and I spend most of our time, so hopefully I can get a chance to BLOG now.

This Summer has seen Olivia maturing in so many ways. Her speech has come along well as has her signing. Although her significant hypotonia has her still not walking solo, her supported walking has come along well. She loves to walk holding one or both or our hands and will at times use her walker. She likes to free stand and can do it for longer and longer all the time. Her Physical Therapist always encourages us that Olivia is doing great given her starting point.

Olivia's crawling is very very good and FAST!

Olivia loves building towers!

Olivia using her walker

Olivia using her crawling tunnel. Not too interested in crawling into it yet.

Olivia gently getting herself off of her chair as opposed to her old method of diving off head first.

Olivia has finally made friends with her sandbox. I have been working all summer getting her to use it. She now loves sitting in it and playing.

Olivia loves her little pool in the backyard. Both the sandbox and pool are from Grandma and Grandpa B

Oh!!! I really splashed water in my eyes that time! Olivia loves to splash!

Olivia has also finally accepted playing in the grass. Again, I had worked all summer on this. So nice to see all of my hard work paying off in these outdoor activities. I had feared that we were not going to make the progress I wanted to see with outdoor textures this summer. But she is doing great! Today she even ASKED to go outside and walk. She walks (with help) well on the patio and grass.

Lovin' the beautiful day and the beautiful blue sky in her backyard.

Love this Song

2011-07-17T10:57:00.000-07:00

We use signing with Olivia and we have found it to be a wonderful communication tool given that children with Ds have delays in their speech. Olivia is beginning to attempt to say more and more words now, but she has been communicating beautifully with us via sign language for 16 months. We rarely have a temper tantrum from Olivia that is communication related (of course she is Two years old and we get the I WANT MY WAY tantrums).

Signing has given us a closer relationship with Olivia than we could ever have imagined. We get to see a side of her that we would not see otherwise. The other day she heard me comment that I thought her godmother had some pain in her knees. I said, that I think her knees HURT. Olivia immediately started signing HURT and SORRY. As in, I am sorry that her knees hurt. I know that Olivia may not have understood what we were talking about for real, but she is trying to be a part of our conversations and is truly paying attention to what we are saying.

Maybe raising Olivia has not been "easy", but it certainly has been VERY VERY VERY GOOD!

Enjoy the video! I love this song! It says just how we feel about being able to communicate so well with Olivia even though we have to use a lot of signing at this point.

Finally a post about Olivia

2011-07-16T12:18:00.000-07:00

For any of my Blogger mom friends who have followed my blog, I apologize for my absence. Things have been a bit crazy around here these past months. I have been on Facebook, so if you want to friend me on FB let me know! I miss my blogger mom friends. I think of you and your kids often but have not been up and living in blogger world recently.

Some of you may remember that Olivia's ultrasound showed a heart defect that was not found at birth. Olivia has been cleared of all heart defects and no longer sees a cardiologist. Now I wonder (LOL) if the ultrasound was not picking up my husband's heart defect! My husband has passed out more frequently than the average person since childhood. Recently I had to call 911 twice when he passed out. He spent 7 days in the hospital and after a tilt table test, they diagnosed a heart birth defect! The good thing is that a pacemaker was implanted that same day and that should solve the problem! Now many of you many recall that only dirt is older than me and my husband. We are indeed older parents, so it was amazing to the doctor as well as us that at a ripe old age they found a birth defect. For any of you who know too much about cardiology, the diagnosis was cardiac inhibitory neurocardiogenic syncope. Basically in response to average daily stresses his BP and pulse would plummet and he would on occasions pass out from his heart stopping briefly. The doctor said that my husband died for 10 seconds during the tilt table test, which of course leads to the standing joke that he died but got sent back. We are very glad that he did get sent back!

FrankenWalking & Glasses

2011-06-23T18:13:00.000-07:00

Olivia giving her legs a try ... maybe these things are worth something after all :-)

Some of you have wondered how the glasses are going ... we'll let you judge for yourself. Good thing they make 'em tough :-)

Starting To Stand

2011-06-15T17:15:00.000-07:00

Hot News ... Olivia has started standing on her own. We are so excited and happy for her.

A Few More Photos

2011-05-13T10:32:00.000-07:00

Here are some photos taken in our backyard recently. Olivia loves to play outdoors!

She has a good arm!

That newly emerged pincer grasp is coming in handy!

Two New Photos

2011-05-13T10:23:00.000-07:00

Realized that I have not posted new photos in a while. Here are two.

Olivia is loving trying out some cloth diapers and wool covers. Mommy is enjoying them too!
In addition to being soft and wonderful, they will help Olivia realize that wetting in her pants is uncomfortable and that using a potty is a good alternative. But potty training will most likely not start until Olivia is a walker.

God Doesn't Make Mistakes

2011-05-12T09:58:00.000-07:00

This video says it all about my life with Olivia (only I was not the mother with the ultrasound, the message to Olivia's birthmom was the same)

Olivia is truly a fabulous blessing in my life! I would not change one thing about her!

Watch the video.... it is my life!!!! And a wonderful life it is!!!

Video of Olivia (hopefully)

2011-04-28T10:28:00.000-07:00

Olivia washing her face.... etc

Easter photos

2011-04-24T10:55:00.000-07:00

Here are just a few Easter photos:

Blessed Happy Easter! Rejoice! Jesus is Risen!

All ready for Mass and playing with my Easter basket. Raggedy Anne was a gift from my Birthday in 2010, but she was sitting in my basket this morning. Silly Annie! :-)

Loving my soft cuddly Melissa and Doug bunny that Daddy found at Whole Foods.

My Easter LOOT!!!!! Books!!!! I LOVE books!!!! And bath toys and a HOLY CARD!!! I LOVE Holy Cards!!!!!
In lieu of Birthday cards, please send my laminated Holy Cards!!!!
This morning I was sitting looking at my Blessed Pope John Paul II card from my godmother and I was saying PaPa!!!! No wonder my mommy loves me so much!!!

Mommy and Daddy insisted we color Easter eggs. I was not happy about it at all. They would not let me throw them. Give me the plastic ones any day! I can throw those and put them in the dishwasher. And then Daddy tried to get me to eat a piece of white egg this morning at breakfast. I put it in my mouth and spit it back out. He should not trick a cute little girl. Last night at dinner, he took me and Mommy to a nice restaurant in Granger and tricked me with sweet potato fries. I spit them back out too. I like the baked sweet potato only when it was baked whole. This other way will not do! I have my standards. The waitress loved me and brought me broccoli and bananas. Bless her! She also was learning how to sign so she could talk to me better. Such a love! Hope Daddy tipped her well!

New Measurements for Olivia

2011-04-20T11:27:00.000-07:00

We went to the endocrinologist yesterday, so we have some new measurements for Olivia.
Olivia will be two on May 5.

On the Down syndrome chart:

25 - 50 percent for length at 31 inches

75 percent for weight at 23 lbs 6 oz

On the Typical chart she is:

10 percent for weight

3 percent for length

Doctor was impressed by her good attention span, communication, sociability and how "smart" she is!

Olivia photo in glasses

2011-04-13T10:43:00.000-07:00

Hey! I really like seeing things in my cool glasses!

Hi everyone!

Olivia is doing well! So much is coming together to making her a great two year old! Hard to believe, but May 5 she will be two! She is sooo much the two year old! And we could not be more pleased!

Gross motor update (and glasses)

2011-03-24T10:57:00.000-07:00

Olivia is doing so much better at getting to standing these days. She can pull up in her crib with ease (but no cruising yet). In fact, she can pull up to standing just about anywhere she wants to these days! This week she mastered holding my hands and pulling to standing. She is loving this, and we do it a million times a day! (yes, I have counted! :-) ) She is still not taking steps, but is interested in taking climbing steps on me. I am trying to interest her in the main staircase, but no interest so far.

The other thing of note is that Olivia has been working on creeping on all fours for about a month now and can creep on all fours for two feet before her hips give out from under her.

She seems thrilled by her new abilities and is all about practicing her gross motor skills these days. The cats look at me as if to say, "what happened to the kid who just sat there and left us alone?" Yet the cats still love her and are very interested in her. We think our youngest cat will be thrilled when Olivia is able to carry her around. She is a sweet cat who loves kids and is very tolerant.

Glasses???? Yes.... someday.......patience is a virtue..... Olivia loves the girls at my eye doctor's office... they are just down the road from us, so they save us when Olivia needs her glasses fixed. Olivia communicates beautifully with them and always blows them kisses bye-bye.

Olivia is back to being a people lover, just in time for Summer! She is also loving to have the shower nozzle spray her face gently, again, just in time for Summer splashing in the Lakes!

Oh... Olivia outgrew her PJ bottoms while she slept. I could not believe it. She went to bed with them fitting nicely in the length and woke with them too short. Can you say basketball player?!

Sign Language - Why we use it

2011-03-21T18:30:00.000-07:00

I found this a good explanation of why we use sign language with Olivia in addition to speech:

Confessions of a Montessori Mom: Montessori and Sign Language Question: "If Dr. Maria Montessori were alive, would she suggest sign language? I used to ask myself that question a lot! I do not think she would be..."

The Good Samaritan Reflection

2011-03-18T10:57:00.000-07:00

Recently, I have been rereading Pope John Paul II's encyclical on the Meaning of Human Suffering. As I read the following passage, I thought about the many people we have met who have adopted older children with Down syndrome from Eastern European orphanages and other poor institutions. These children with Ds did not stand a chance and had already suffered greatly from a lack of care. These brave and loving families stopped by the side of the road, spared all they have, and take action with all their life to give these children meaningful lives. So many of these families adopt more than one child from these institutions and give up so much financial security and take on the unknown medically and otherwise with these children. This passage it a tribute to these Good Samaritan's who do not pass by or throw a rug over the suffering of others, but are like Simon of Cyrene and willingly take up the cross of Christ and walk their entire life with the Love of Jesus, no matter the price. (I think this applies to families who raise their own children with disabilities and to foster parents etc, but for some reason the international Ds adoption situation really came to mind) As we celebrate St Joseph Day tomorrow, let us ponder the care of our neighbor that Christians are all called to fulfill.

"The parable of the Good Samaritan belongs to the Gospel of suffering. For it indicates what the relationship of each of us must be towards our suffering neighbour. We are not allowed to "pass by on the other side" indifferently; we must "stop" beside him. Everyone who stops beside the suffering of another person, whatever form it may take, is a Good Samaritan. This stopping does not mean curiosity but availability. It is like the opening of a certain interior disposition of the heart, which also has an emotional expression of its own. The name "Good Samaritan" fits every individual who is sensitive to the sufferings of others, who "is moved" by the misfortune of another. If Christ, who knows the interior of man, emphasizes this compassion, this means that it is important for our whole attitude to others' suffering. Therefore one must cultivate this sensitivity of heart, which bears witness to compassion towards a suffering person. Some times this compassion remains the only or principal expression of our love for and solidarity with the sufferer.

Nevertheless, the Good Samaritan of Christ's parable does not stop at sympathy and compassion alone. They become for him an incentive to actions aimed at bringing help to the injured man. In a word, then, a Good Samaritan is one who brings help in suffering, whatever its nature may be. Help which is, as far as possible, effective. He puts his whole heart into it, nor does he spare material means. We can say that he gives himself, his very "I", opening this "I" to the other person. Here we touch upon one of the key-points of all Christian anthropology. Man cannot "fully find himself except through a sincere gift of himself"(92). A Good Samaritan is the person capable of exactly such a gift of self.

29. Following the parable of the Gospel, we could say that suffering, which is present under so many different forms in our human world, is also present in order to unleash love in the human person, that unselfish gift of one's "I" on behalf of other people, especially those who suffer. The world of human suffering unceasingly calls for, so to speak, another world: the world of human love; and in a certain sense man owes to suffering that unselfish love which stirs in his heart and actions. The person who is a " neighbour" cannot indifferently pass by the suffering of another: this in the name of fundamental human solidarity, still more in the name of love of neighbour. He must "stop", "sympathize", just like the Samaritan of the Gospel parable. The parable in itself expresses a deeply Christian truth, but one that at the same time is very universally human. It is not without reason that, also in ordinary speech, any activity on behalf of the suffering and needy is called "Good Samaritan" work."

Wearing glasses

2011-03-13T11:52:00.000-07:00

Here is our one week update on Olivia wearing glasses. A little progress, but it is a slow process getting her used to them. She likes how she can see, she just doesn't like how they feel on her face yet.

Stringing Beads

2011-03-13T10:11:00.000-07:00

We have been taking the Sensory Processing Disorder approach to Olivia for over a month now and we are seeing wonderful results. All of the bean throwing, rocking horse, car riding, messy play, ball pools, ball tent, throwing balls, playing on big balls, climbing, bouncing, dancing etc has paid off! Olivia has become much more focused and calm and able to concentrate and work on her quiet fine motor activities, and she can do so without Barney music playing in the background!

It brings tears to my eyes to sit in the background and watch her quietly work on stacking rings or a simply puzzle, over and over again and with great concentration! This is what Montessori teachers love to see! Repetition and concentration! Good signs! I thought I would never see it in Olivia. But thanks to doing all the "crazy" stuff, and using crazy Fisher Price toys too! We have seen amazing progress.

As I was buying Fisher Price type toys this Fall and Winter because all my "Montessori" type ideas were not reaching Olivia, I cringed. But I knew I had to do what my child needed. Now I am seeing the benefit of "sitting on my Montessori albums" and doing it another way. I did go back and read some Montessori theory. So I went about being a Scientist, studying Olivia and following what I believed Olivia needed. What Olivia needed looked nothing like what I had ever done in a Montessori setting, but it worked and now we are getting to the sort of activities I had hoped to see Olivia doing. So in some ways, my "Montessori meets Fisher Price" activities was very Montessori in theory, which was my belief all along. No matter and theories aside, what matters is what is right for Olivia!

Here is Olivia stringing beads. She still needs help holding the stick, but other than that she is doing such beautiful work it brings tears to my Montessori trained eyes.

Ball Pit Tent

2011-03-12T09:38:00.000-08:00

We noticed that using the baby pool for a ball pool had its potential for some dangerous mishaps. So we switched to this ball tent. It is much safer. Yesterday was the first day with the tent. True to form, Olivia hesitated to enter, but when Mom climbed in Olivia was ready for action. There are 200 balls, and Olivia sat in her ball tent and proceeded to throw all 200 balls out of tent one at a time. It is the Process not the Product at this age. Olivia threw each ball out with two hands, them proceeds to wave or flap both hands after every throw. It was exhausting just watching her. She did this toward the end of the day, and she fell asleep very easily last night.

We have had much less, in fact practically no, trouble with Olivia throwing toys since we have been using the ball pool. I think giving her an acceptable activity in which she can throw to her heart's content has been what has helped.

The Answer!

2011-03-11T17:01:00.001-08:00

So what did you guess? Would Olivia eat the collards or the bananas first? …. The answer is YES. She asked for collards, then asked for bananas, then asked for collards, etc. I guess she loves collards and bananas equally. It wasn’t clear there was a strong preference for one over the other.

Bananas or Collards- Take a Guess!

2011-03-10T17:55:00.000-08:00

This post was written by Daddy. Thanks Peter!

For a toddler (who doesn’t yet toddle), Olivia is a very good eater and is willing to eat a wide variety of foods.

Olivia will eat peaches, pears, mandarin oranges, mango, pineapple, strawberries, prunes, carrots, squash, yams, cranberries, green beans, peas, lentils, pinto beans, daikon radish, rutabaga, turnips, broccoli, cauliflower, rice, and rice chex. Olivia will go crazy for collards and bonkers for bananas. The girl loves her veggies and fruits!!!

When eating, Olivia has strong opinions about the order in which she eats her foods. She insists on eating all of her favorite thing, then will eat all of her next favorite thing, etc. As parents, we are pleased that in the end, she usually eats everything on her plate.

Given she loves collards and bananas, we thought it would be fun to put both on her plate and she which one she ate first.

What is your guess?

Check back tomorrow, for the answer.

My Friend the Potty Seat

2011-03-09T09:46:00.000-08:00

As Olivia approaches her Second Birthday, we have been thinking about potty training one day. Of course, Olivia is not yet walking, so that puts a wrench in the plans, but we feel that it is not too soon to explore the idea of potty seats with Olivia. So we have brought this small seat out of the closet and let Olivia start sitting on it. She enjoys sitting on it fully clothed and looking at her books. Next step will be to see what she thinks of sitting on it with nothing on her tush. But we certainly have time. We are also getting ready to have her in cloth diapers (at least sometimes) so that she really gets a chance to feel wet. I think the Tushies disposables give her that WET feel. But I believe that cloth would give even more WET feel. Olivia already tells me when she has poop in her diaper. I see that is a good sign. She signs diaper and then looks at me and says POO. (At first I thought she meant Winnie the Pooh, but I learned differently.) She also looks at the bear on her potty seat and make her bear sound (her sort of growling sound that she imitates us doing).

Olivia is not in Speech Therapy, but when we are at therapy she always seeks out the speech therapist who once did a swallow study on Olivia. We decided that Olivia is the stray cat. Once you feed her she will always follow you. The nice thing is that Olivia keeps interacting with the ST and we keep hearing from the ST how well Olivia is doing.

The other thing that is neat at therapy these days is that Olivia has taken to a little 8 year old non-verbal girl confined to a wheel chair. Olivia will always crawl into the room where this girl is having ST. Olivia greets the little girl, and the two girls smile lovingly at each other. It is so heartwarming to see Olivia always put a big smile on this girl's face. There have been times when this little girl is doing really demanding physical therapy and Olivia goes up to her and gets her to smile and take her mind off of her therapy and do better. These are the moments that strengthen us through the tough times!

Glasses- Second Day at Home

2011-03-06T10:49:00.000-08:00

These pictures pretty much tell you the entire story.

Olivia does seem to like seeing her books. Her eyes get wide and relaxed and her face sports a contented grin. Then she realizes there is something on her face, and off the glasses go!

Peter also sat with her on the floor with the television at at distance to watch WNDU Sunday morning news. In the past, Olivia would like the idea of turning on the TV, but quickly lose interest, most likely because she was not seeing the picture well. Today, she sat there mesmerized! Absolutely wide eyed and with a very relaxed contented look on her face. I can see her getting addicted to Barney like so many kids with Down syndrome. (or perhaps she gets addicted to Winnie the Pooh DVDs. She has a Pooh mobile over her crib and she has recently become a very big Pooh fan outside of her crib. Peter put the glasses on Pooh, and that really broke the ice on the glasses. Today, Olivia gave Pooh a chance once again to wear her glasses.

And with a little pout!

This is my favorite photo!

One last note: Yesterday, Olivia turned 22 months. To celebrate, she pulled to standing repeatedly in her crib (while barefoot) for the first time, and returned to sitting with grace! The day before, she pulled to standing at the bathtub and also inside the bathtub. Yes! Dangerous! And I have the sore back to show for her bathtub standing. I am also thinking of wearing a wet suit for her baths, as she likes to throw all of her toys out and me, and also likes to try to climb out onto me. Peter picked up some Vtech or Leap Frog lights and flashes type bath toys thinking that if she had something super exciting in her tub, then maybe she would give her old mom a break and stay put in her bathtub. Oh the excitement! Lots of challenges and lots of keeping a sense of humor. This too shall pass. One day I will have lots of stories to tell our adult Olivia about all of her antics as a child!

First Photo of Eyeglasses for Olivia

2011-03-04T17:56:00.000-08:00

Here is our first photo of Olivia in her first pair of glasses. You can see that she is a bit perplexed. This photo was taken while we were still at the eye doctor. Peter was holding Olivia on his lap and holding her arms down. She was not fighting, but was a bit confused. If he let go of her arms, the glasses went sailing through the air! When the technician showed Olivia herself in the mirror, Olivia studied herself and seemed pleased.

We also noticed that Olivia was looking for me when I was taking a movie, and was at first upset that she could not find me, but then she made eye contact with me from a distance and soothed right away at a distance. For some time now, I had noticed that if I was a distance from Olivia, she would not soothe until I got right up to her.

I cannot wait to see how she takes to her glasses tomorrow when we can try her looking at her books at home with her glasses on. Recently, she has needed her books so close to her face that she is only interested in them when we are with her so that we can hold them close to her face.

It may be sometime before Olivia wears her glasses full time, but just like everything in being Olivia's parents: Patience is the key to success!

Ball Pool

2011-03-04T10:23:00.000-08:00

Another new addition to Olivia's sensory program is her baby pool filled with 200 (phalate free) balls. She did not take to the ball pool right away, but today she was seeming to enjoy it more, especially throwing balls out of the pool! I have to tell you that cleaning up after this sensory activity is so very much easier than cleaning up after the sensory box filled with rice and beans! Someone asked why we do such sensory activities with Olivia. Because Olivia has Down syndrome her senses are not as integrated as a typical child's. Some sensations feel much more alarming than they should and some sensations don't register in her brain as easily as they would for a typical child. Olivia's neurological and cognitive connections are not operating as they should. Although we can never completely cure Olivia of this, through lots of intense sensory play, they have found that these kids' brains learn to make better neural connections.

Typical children also need to have lots of sensory experiences. The brain of a child is developing and children learn through their senses. Sensory activities help typical children's brains grow and develop also. Think of good old fashioned childhood play: sand box and finger paint. Sensory experiences!

So although it may seem at times, as we share with you sensory experiences, that we are creating for Olivia, that we have lost our marbles, keep in mind that we are about the business of helping her brain and neurological system grown and develop as best we can. If that takes 200 balls and a baby pool in our sunroom, then that is our new decorating scheme!

Sensory Box

2011-03-01T10:35:00.000-08:00

Olivia loves her sensory box now. I posted originally, when we first introduced her box to her, that she protested the boxes existence! Now she loves it! The great effect of time spent playing with her box, is that it leaves her calm and focused! She has been doing so much better with so many things since we have instituted more purposeful sensory play and more hearty gross motor play! I like what one book said about sensory processing disorder treatment. It said that good old fashioned, get dirty, roll in the mud, get active play is just what these kids need! Cannot wait to see her belly crawling all over the yard soon!

Our Latest Attempt to Keep Olivia Moving

2011-02-27T07:10:00.001-08:00

Our Latest Attempt to Keep Olivia Moving

2011-02-27T07:10:00.000-08:00

Eyeglasses for Olivia

2011-02-24T10:12:00.000-08:00

Today we took Olivia to her eye doctor. Although Olivia was not due for her annual checkup until Summer, the doctor told us last Summer Olivia was already nearsighted and if we saw signs things had worsened he wanted to see her sooner. Over the past month, we had noticed she was squinting and she was not interested in her books unless they were held very close to her face. The OT (occupational therapist) also noted the squinting. So, we decided to error on the safe side and call the doctor who right away confirmed he indeed wanted to see her for himself.

After examining Olivia, which included eye drops that dilated her eyes (and really made her mad), doctor it was time for Olivia to be fitted for eyeglasses. He says with her current deterioration of vision an adult would not pass their driver's test. He also noted a school age child would be having significant problems seeing the board, and a teenager would not be seeing the movie screen very well anymore. We were surprised her vision was as weakened as he had indicated and we were so very grateful we had decided to get her checked out.

Doctor says it could take Olivia a number of months before she will actually wear her glasses full time, and we should not push her, but just take a calm approach and keep putting them on her periodically when she might benefit from seeing the most and hope and pray overtime she accepts them. Some kids take to their glasses faster than others. We hope Olivia simply likes seeing better and will wear her glasses. But we know this scenario is not very likely, and it will probably take months for her to start wearing them. Peter and I agreed we need to pray to Saint Lucy for her intercession to God to help Olivia wear her glasses. And we also need to ask for my Grandma Lu's (Lucille) intercession. Although my Grandma Lu died when I was only 3 yrs old, I would always ask her intercession for the "big things in life" as a child. (Saint Lucy is the saint we Catholics think of when we think of eyes)

I had wondered how a mom and dad pick out eyeglasses for their 21 month old. So here is what happened. The nice lady brought out a small bag holding about a dozen pairs of very small eyeglasses. She looked at Olivia and grabbed one pair of pretty pinkish frames and slid them on to Olivia's face. Olivia slid them right back off. But in our moment of seeing them on her face, we knew this was the correct size and frame. There was a quick ruler measurement taken of Olivia's eyes and the nice lady told us she would order a few combinations of frames for Olivia, all break resistant and hugging the ears as so not to slip off. The pair Olivia tried on and tossed aside did not have the "ear hugging"mechanism. Hopefully her glasses will stay on her face for a few more seconds. It should be a few weeks before we have Olivia's glasses. Peter notes that it may be many months before we manage to get a photo of Olivia wearing her glasses.

green exercise ball

2011-02-17T17:15:00.000-08:00

Playing

2011-02-15T16:10:00.000-08:00

Olivia Singing Beach Boys Music

2011-02-14T16:02:00.000-08:00

Well Baby and Photos

2011-02-11T11:15:00.000-08:00

We had a 21 month old Well Baby Doctor visit today. He felt Olivia was doing well, was cognitively "All Toddler" and she is progressing slowly but surely in the Gross Motor area. We felt the visit went well and that we got the motivation and information we needed to go forward.

Olivia once was a 50% percentile baby, but now is a 15% and 7% toddler. She now weighs 22 lbs 2 oz which is 7% for weight and she is 31 1/2 inches long which is 15% for height. Doctor felt this was fine, as kids with Ds eventually fall off from their peers as far as size is concerned. Olivia gets plenty of calories, but she is very active! She is still a belly crawler, so ask anyone who has been to boot camp, and they will tell you that it takes a lot of energy to belly crawl. We have some long expanses of hallway in our house, and Olivia is not afraid to belly crawl herself from room to room. If she is chasing a cat, she is particularly quick about it!

We have noticed hair loss in Olivia, but the doctor does not believe it to be alopecia. Alopecia is common in people with Ds. Jacob had it. Doctor believes this to be normal age related "losing baby hair getting child hair" hair loss. Of course, we will watch it and hope that he is indeed correct. She does have baby fine hair in the areas she has lost hair, so he believes this is not alopecia. (weigh in on this topic if you know something else on the topic)

Olivia is getting good at her drum and enjoys is so very much.
It is wonderful organizing activity and works key muscle groups also. This drum gives a very pleasant sound.

Olivia has taken to her sensory box. No longer fearful, she enjoys reaching in, grabbing a handful and throwing the beans all over the room. Lorelai, our oldest cat, loves to chase the beans that are thrown. Rory, our youngest cat, just watches and looks confused.

You can sort of see her hair loss on the right side in this photo.

With some Baptism- Being Born- Being Adopted money from Grandma and Grandpa B we bought Olivia her own special chair (and table and chair... see below). She loves to sit in it and read and also to kneel up to it. It is a good sized chair, I can sit in it, so it should last her a good long time.

Playing with Daddy's sock

2011-02-11T10:29:00.000-08:00

Olivia found Daddy's sock, and she was having so much fun with it! Why do we spend so much money on toys when we can but a package of tube socks!? :-)

Patience, Humility, Love and Laughter

2011-02-09T10:32:00.000-08:00

I cannot believe that I have not posted yet in February. Olivia has been keeping us hopping as usual. Ironic that she is totally into bunnies these days!

We are doing PT and OT at the hospital and I am learning and reading more and more about sensory issues and trying to come up with a sensory diet (which is not about food at all, but is about the kinds of sensory input that keep Olivia calm and focused but alert enough to be productive. As far as we can see so far, Olivia seems to have mixed issues: she is both over-sensitive or over responsive to sensory input and under- sensitive or under-responsive to sensory input. Seemed strange and not possible to me, but turns out that this is a common combination in kids with SPD (sensory processing disorder). I am needing to start writing down what I find works for Olivia, and start the official formulation of her sensory diet. This will go far to help people other than me take care of her. (this was in many ways suggested by my friend who has a teenager with autism.)

Olivia has not been drinking out of her straw cup since she had the flu. This is doing nothing good for her tongue protrusion. So that is an area of concern. She finally started drinking fluids this week though. She will take watered down baby food fruit out of a cup. Now at least we are having an easier time keeping her hydrated.

Olivia is doing so much better with using utensils and a plate or bowl when she eats. She is resisting the urge to throw!!!!! Praise God!!!! We still have a ways to go until we have unsupported feeding, but the progress is stunning! Olivia has good eye hand coordination when she keeps focused.

Gross motor is as always slow going. She is standing at her bar or against the sofa and dancing, but has no interest in cruising or taking steps. She is becoming more stable on her feet though. PT and I agree that she will not walk by 2 yrs. old.

In all things, Olivia gives us gifts daily. And the gifts she gives are the ones that we really need! The priceless gifts of Patience, Humility, Love and Laughter!

She is a love!!!! And she is of so much value that I thank God daily for having been chosen by her birthmom to be her Mommy! I also thank her birthmom!!! Thanks C!!! And thanks for being a sweet friend to me!!!!

Therapy Ball /24"

2011-01-31T10:27:00.000-08:00

Olivia checked out the big 24" therapy ball at PT today. She loved it and it provided her a more dynamic standing experience as it moves with her as opposed to the bar which is stationary.

Daddy was thrilled with what he saw, and in a matter of days a package will arrive with Olivia's own ball for home.
We will get her walking yet! And it is fun to work with her towards this major milestone.
Her therapist is the other person in the photo. Olivia still loves her therapists very much. They are gentle and soft spoken and patient with her. Just the way she likes it. When Olivia was doing OT she saw her PT go through the room and she took off after her. This has thus far been a so much better experience for all of us than the way that Olivia did not take well to her early on therapists, even though they were indeed quite qualified and experienced. Olivia simply did not click with them.

Movement Sample

2011-01-30T15:57:00.000-08:00

I wanted to show the physical therapist a sampling of what Olivia is doing at home in the gross motor area. Here is the sample video I put together.

Some recent photos from January

2011-01-30T10:24:00.000-08:00

Realizing that I have written very little during January, I thought I would upload a few photos and try to fill you in on what January has been for us. Olivia had a 24 hours stomach bug a week ago. She is fine, but it does set her back in the sensory issues of eating. We are now going to Therapy at the hospital. It is going great! Olivia loves her OT and PT! Olivia is so brave and friendly there! So good to see! At therapy we are working on learning about Sensory Processing Disorder (SPD). This is extremely common with Ds. Olivia has this, but not as severe as we have heard some stories about. So I am reading some books on SPD and learning how we can help Olivia more at home. One thing is that we are encouraging more old fashioned play, and have ruled battery powered toys for gross motor motivation and for when she needs a break (or mommy needs to get laundry started).

Olivia received this drum from her Grandparents M for Christmas. She is getting better and better at it. It turns out that banging on a drum and listening to us banging on a drum will help her Auditory SPD. And it is fun! What is not more old fashioned than drumming on a drum! Notice that Olivia is sitting on her scooter car from Grandparents B. Olivia has discovered that it works great to get her around in a upright position since she is not yet walking. Olivia likes to motor herself to her shelf and play. PT encourages her scooter car as it is strengthening her legs, hips and torso.
And it too is Fun!

After Therapy, we stop by the cafeteria for a quick snack! Olivia is starving by this point!
And when we are driving home, she quickly takes a nap! Therapy is fun, but tiring!

I know Olivia is making a funny face, but she loves playing on her blue ball. It is strengthening her muscles too, and we are seeing her hips getting stronger so that maybe one day she may just crawl on all fours as opposed to her belly crawling position. Olivia is still adding words and signs to her communication. When she wants to play with her blue ball, she speaks blue ball. Now it doesn't sound so clear, but when you take it in context, one really knows that she is trying to say blue ball! She can also say ball popper, but that toy has been locked up in the closet!!!! (I think it became a "safe place to hide" and not do the more challenging work that she is very capable of doing. As a parent, I want her to have fun. But I also want her to not limit herself to the easy work, when she can enjoy the more challenging work. But given a choice, Olivia will choose easy. I also think that the ball popper is not good for her SPD right now. She loves her ball popper though.)

Making progress in moving on all fours. She cannot crawl, but is pivoting and hopping forward a few inches.

Olivia LOVES LOVES LOVES her car!

And for one of her battery powered toys, she has a Leap Frog cell phone.
She really loves this and we pretend to call Grandma! Olivia has become a great mimic!

This was the first time I showed Olivia her sensory box. It is a 3 gallon bin filled with rice and kidney beans. I have stuck a few beach toys into the box. Olivia screamed!!!! She was very upset by this! The next day, I took it into the kitchen. When Daddy showed an interest in reaching into the box, then so did Olivia. But not for long. (This is all SPD work. Olivia is tactile defensive we think. But we know that she has always been very cautious around new things and toys) We need to try this box again today and see if it goes better. Then we need to try it everyday that follows. We very much need to get a sandbox this summer! (Spring actually!) Just a small plastic one with a cover for starters we think)

Olivia is getting more sturdy and steady on her feet. We bought this exercise bar with mirror as a birthday gift for Olivia. It was money well spent! Now a days, Olivia spends much time standing, dancing and hopping in front of the mirror. She is shifting her weight now, and bending her knees. She is not yet moving from side to side to do any cruising. But we are encouraged that she is doing so much better with weight on her legs. A year ago, we could not get her to accept any weight at all on her legs. This has been Olivia's biggest challenge. Hypotonia or low muscle tone can really slow down reaching those major milestones. I hope she will be walking by 2 years old. But I think that 2 1/2 is more realistic. In my most hopeful scenario, she is walking by July 4. But she will walk when she walks, and that is fine with me! It has to be!

Olivia thinks standing in front of a mirror is great fun!

And I think she really has grown fond of the cute little girl in the mirror who always smiles back at her and also has a great sense of humor!

Standing, Dancing, Hip Hop!

2011-01-29T14:18:00.000-08:00

Olivia is almost 21 months old. She has always had significant low muscle tone. She is working currently on strengthening her standing muscles in preparation for walking. We use motivating toys to encourage her to stand for longer periods of time. "Dancing" and "'Hopping" encourage her to shift her weight from on foot to the other and bend her knees. Here is a video of some gross motor playtime.

Tea Party

2011-01-26T10:32:00.000-08:00

A Short Drum Recital

2011-01-25T17:08:00.000-08:00

This mini recital by Olivia is complete with a wave hello greeting, a short drum piece and a closing signing of all done, and she does it all in 19 seconds! Efficient!

18 Teeth!

2011-01-19T10:02:00.000-08:00

We now know one of the other reasons that December was such a difficult month and why our Happy Baby O was a not so Happy Baby at all for a while. Olivia was getting her TWO YEAR OLD molars! She now has 18 teeth. Olivia got her two year old molars when she was 19 months old. Now remember that kids with Down syndrome tend to get their teeth late. Apparently, Olivia did not get the memo. If our sources are correct, one would not expect the two year old molars until 24 month to 33 months. Olivia still needs her two top eye teeth to get her full 20 teeth. Ds moms, I think that others reading this blog would find it interesting if you commented on when your little darling got their first tooth and when their two year old molars came in. With our little darlings with Ds, development in all areas is all over the place. Olivia is still not walking, even though some of her Ds peers have been walking for some months. Olivia is talking (or at least she is trying to say lots of words) a lot, but some of her Ds peers are not. Each of our dear children with Down syndrome are just like all human beings. We all have our strengths and we all have our weaknesses.

(The way we learned that Olivia has these molars is that when she was screaming bloody murder while the doctor did her ear recheck, I got a good look into her mouth. I was amazed at what I saw, and then the doctor looked to confirm that I was correct.)

(Emily L., notice the bumble bee)

Olivia had therapy at the hospital Monday (PT and OT) and she has really taken a liking to the new therapists. Olivia did not click with her Early Interventions therapists. But these ladies she really likes! Olivia was even very comfortable belly crawling all over the room exploring, and even took off down the hall. When other children arrived and the place got chaotic and noisy, she continued to do well. I think it is good that we go to the hospital for therapy so that she can learn to deal with getting along in a very different environment than home. I hope that she will be ready for typical preschool by 3 years old. Therapy at the hospital is one step to her independence from mom and dad, and starting to have Olivia's life outside of home. Our Baby O is growing up! Look out world! Here comes Olivia! And Olivia is very good at wearing people out ! (or so the book says!)

Fisher Price camera play

2011-01-18T16:44:00.000-08:00

Networking my Blog????

2011-01-18T02:57:00.000-08:00

Dear Ds Moms who Blog,

Can you tell me about networking my Blog?

Should I do it and Why?

And what is it anyway?

What are the advantages?

Do you do it?

Thanks!

Saying Banana

2011-01-16T09:36:00.000-08:00

Olivia is attempting to say BIG words these days. She is not very good at it, but we are pleased that she is making these attempts. She likes to try to say rutabaga and banana mostly. Here is a clip of her attempting to say banana.

Driving a Car!

2011-01-15T16:46:00.000-08:00

Olivia got this ride on toy for Christmas. At first she had no interest in it. Then she enjoyed going backward. Today she figured out how to go forward. I got a real work out! She is a bit dangerous and so needs a spotter. Notice that she has to keep the music going on the car. A girl has to have her tunes!

The Rest of the December Photos

2011-01-13T16:53:00.000-08:00

Here Olivia is with her Great Uncle George's presents during the wrapping process.

Olivia geting into the Jingle Bell Spirit

This is one of Olivia's favorite activities. And it is helping her make progress in moving around in an all fours crawling position. She still is mostly a belly crawler though.

Olivia telling us her tummy was bothering her.

Mommy got this awesome bike cart for Christmas from Grandma and Grandpa M. We cannot wait until it warms up and we can go biking as a family.

Olivia enjoying her Garden Chimes from the Nolans.

Just smiling.

And then not smiling. When Olivia is sick, it is hard to get smiles out of her. When she is well, she is a very smiley happy silly little girl.

Olivia loves shoelaces! And she thinks she can tie her own shoes. It is really cute to see her diligence!

The Christmas loot!

Olivia did not like the hat, but we managed to sneak in a few photos. This was the best photo.
But she was not about to smile. Hats are not her favorite thing.

Again the hat. She could take the hat off of her head as quickly as we could put it on her head.

Christmas morning with her fish tank from the Nilles. She was not feeling well.

The ball popper was the toy to bring some smiles and life out of her for a short while.

This basketball game from Uncle Jon and Aunt Chris was a big hit! Or should I say a slam dunk!
Olivia had no trouble knowing exactly what to do with this toy.

And every little girl needs a kitchen and a tea set. These by Fisher Price have been very fun for Olivia. I don't think she has any idea that this is kitchen stuff, but it is good fine motor work. Anything that keeps her hands busy and exploring is great. She has figured out that the tea cups are cups and tries to drink from them. I am memorizing all the cute songs from these Fisher Price toys.

December photos

2011-01-13T09:11:00.000-08:00

With Olivia sick in December, I will be posting some old photos. Here is the first batch.

Olivia opening a Christmas gift. She was not feeling well and did not enjoy opening gifts this year.

One of her favorite gifts was this red ball from Grandma and Grandpa B

Aunt Sheila got Olivia all set up for learning about the Grinch Christmas story.

Olivia likes her ball popper, but cannot walk behind it yet of course.

Olivia LOVES her wheels from Grandma and Grandpa B. She can make it go forward and backward. We had no idea she was ready for a riding toy. Grandparents know best!

Olivia played with her ball popper nearly exclusively when she was sick. Notice her cute sweater from Daddy.

There is our happy baby!

This is more recently. Now that she is feeling better, she is back to playing with more complicated toys. In fact, she can now stack up to 4 blocks on top of each other when she wants to and is concentrating.

Olivia is having a good time exploring her duplos from Uncle Eddie and her bristle blocks from the Jordans. This day was really cold outside and I found it comical that she was sitting on the heat vent while playing.

Olivia is loving standing and playing these days. We also try to get her standing with her back to the sofa and playing with us to promote good posture in standing. (per PT instructions) So far so good.

Pre-Walking

2011-01-09T12:56:00.000-08:00

Update on Olivia

2011-01-08T10:54:00.000-08:00

I think we are finally nearly back to a healthy Olivia. Things started going down hill on Dec 8 when she woke LIMP and with a low grade temp. More teeth coming in did not help the situation any. By Dec 18 we were fully into a stomach bug. More scary limpness and purplish hands and feet came our way. Olivia spent Christmas wrapped in swaddling afghans and lying in our arms drinking pedialyte and vomiting. Naps were all in our arms for weeks. Night times were better, but once she started waking up with stomach pains and nausea the nights got sleepless for mommy. An ear infection settled into the mix, and so then an upset stomach with gas and stomach pain settled in. Eating was down to nothing and we had to start all over again with baby food. She lost 3 lbs. Olivia is doing well at gaining her weight back as she is now eating eating and eating! She is especially into fortified Rice Chex with her milk. She is still refusing her cups, but we are keeping her hydrated via extra liquid in food. I think that she associates getting sick to her stomach with drinking. Olivia will finish her antibiotic in a couple of days. She is sleeping better at both nap and night. I was afraid she would never sleep solo again. But she is going solo, most of the time. Our motto is love and patience and prayer will get her well, in addition to great medical care! We have seen the doctor multiple times and lost track of how many phone calls to the office.

I will get a photo of Olivia up soon. She looks tall and slender now. And is taking a few supported steps! Good thing she had been packing a few extra pounds! Her gross motor took a few steps back developmentally during her illness, but her cognitive and language development took off dramatically! Perhaps due to all the time spent reading and playing with us, as she was not keen on playing by herself while sick, probably due to the fact that she barely had the energy to hold her body up by herself. My Mom says she has never seen a child so limp and exhausted while sick with common illnesses. Now we know that when Olivia is sick, it may take a lot more time and a lot more nurturing for her to get better. This was her first real illness in 20 months of life.

(With having Peter have his heart scare during this time frame, we were happy to bid adieu to Dec.)

Her nap is ending...... I will get a new photo posted soon.

Merry Christmas

2010-12-24T04:06:00.000-08:00

IF WE WOULD see the Child on this Night, then we must be prepared perhaps even to be a child on this Night, to let our imagination and our hope and our faith carry us to some new way of seeing, some new way of hearing, so that our eyes might be opened and our ears might be too, so that our hearts might be quickened and our spirits might be touched.
In the end, we must be willing to believe in the Promise that Immanuel will come, we must have faith to believe that the Promise will be kept, and we must hope that we too will be willing and able and childlike enough to recognize the face of God in the face of the Child.

- Robert Benson
The Night of the Child

Not well, but improving

2010-12-23T04:03:00.000-08:00

In case you were wondering what happened to us, Olivia has been under the weather for two weeks and my husband had a stress test leading to a heart cath. He is fine. No blockages. He is just recovering and has restrictions on lifting. Olivia is also doing better. Praise God! On both accounts!

We know now that Olivia has a food sensitivity which was causing the stomach yucky-ness (I will spare you the details!). I sure hope this solves our questions about why Olivia kept having bouts of being a limp wet noodle. I know that when my tummy is out of whack, I don't feel very energetic, and so with Olivia's significant low tone, she simply melts to a limp nothingness with very low energy. It was very scary. And the doctor was seen and called repeatedly. He did not solve the mystery. He kept saying stomach bug and ran blood test to check other issues. If your child with Ds is low tone (hypotonia), it changes everything. There is no doubt in your mind as to whether or not low tone exists or if it affects your child. You know it! I had a great reassuring phone call the other day with a mom of two low tone children with Ds. She echoed all I said. And I liked that she told me that when Olivia is sick and just cuddles into me all day (and day after day), to just enjoy it. Olivia is a love!!!! I just hope she continues on the path to feeling better. Yesterday she was making progress regaining her strength and was finally acting a bit more like herself. For the past two weeks, I was wondering where my Olivia had gone. I was reassured that she kept talking and kept signing. But she was not her normal smiley self.

I am just drained from these weeks of concern for my Olivia and my husband. This is the darkest time of the year, and this year it has been a particularly tough time to get through.

Presents are under the tree and we are always ready to celebrate the birth of our LORD and Savior Jesus Christ! Olivia has not understood the excitement over Santa, but she loves to sign Baby Jesus and to take her baby Jesus in and out of His manger. (it is just a tiny stuffed toy that I sewed years ago and part of a stuffed Nativity Scene. Olivia is only interested in Baby Jesus and Hail Mary)

Sledding for the First Time

2010-12-05T17:14:00.000-08:00

Hey this is really fun!!!!

This was my first time sledding and it was the best! Here is me relaxing in the snow. I learned to sign SNOW today! It looks like I am dancing, but it is my close approximation of the sign for SNOW. I really like snow. And I don't even know that it is cold, because Mommy had me all bundled up so that I could hardly move. But I could feel the speed of the sled. Awesome!!!

On and Off the Horse

2010-12-03T16:53:00.000-08:00

Olivia has decided that getting on and off the rocking horse is more fun than riding it.

She crawls up to the horse and then looks at me to get her on the horse.

She rides it very briefly...

Then she very carefully lowers herself to the floor and crawls away.

(Repeat! Repeat! Repeat!)

Thanksgiving morning at our house

2010-11-25T10:39:00.000-08:00

Happy Thanksgiving! If you are reading this, you are someone who I am grateful to have in my life. I don't say Thank you nearly enough! So Thank you again and again!!!!! Whether you are a blogger Mom (all of you have been such a great support!!!! I am immensely grateful to all of you Ds blogger moms!!!!) or a friend or a family member or just someone who happened to find my blog, you are part of my life. Maybe you don't even know me, but we have connected because of Olivia. It is a great grace to have our life touched by so many people from both near and far. Olivia has expanded our love and expanded our world. We begin each day with heartfelt prayers that God bless all of you. We especially pray for all people with Down syndrome and especially for the children who are going through medical crises. We know that trials may come our way also, and we know that the prayers of others would sustain us. We pray for all of you who have current medical trials with your sweet children. God bless you! And a big HUG!!!!!

Daddy bought me this awesome pink horse.
It is going to help me get stronger in my torso and my legs so that I can walk!

I am getting really good at it already!

See how well I can stand! I was standing with my back up to the sofa also, but Mommy did not have the camera ready and she was afraid to walk across the room and have me fall down and go boom while she went to get the camera. I will try to pose with my back to the sofa soon so you can see my new trick. I stand big and tall and straight!
Stomach in. Chest out! Like a good Marine! (Right Grandpa B!?!?!??)

Daddy made a great Thanksgiving lunch for the three of us. Here is me praying before our meal and giving Thanks to Almighty God! (after my nap we are going to visit with other family members)

This is me with my plate of food. I also ate some chicken and lots of jellied cranberries! I really LOVE jellied cranberries. And Mommy thought they would be too strong for me. I ate: Rice, yams, carrots, squash, cauliflower and green beans also. Daddy did a great job making an awesome meal! Way to go Daddy! And notice: No baby food at all! Everything was homemade and real adult like food! It is amazing what teeth can do for a person!

This is me eating my first piece of yams. I decided that I like them best leftover and cold. They just taste better that way. And they need to be cut up into nice pretty cubes. Presentation is everything you know!

Working and Playing - by Olivia

2010-11-24T05:23:00.000-08:00

Playing at my exercise bar and mirror is one of my favorite things to do these days. I get better at it everyday. I can get to kneeling with no problem. Getting to standing is not as easy. I can do it sometimes but not always. But I keep practicing and keep getting stronger.

I do the folding of the laundry these days. Mommy helps me.

Olivia Hijacks Blog

2010-11-23T17:31:00.000-08:00

Hi! This is Olivia!
I am taking over posting on the blog for awhile, because I was reading the past few entries and realized that Mommy has become extremely boring. I have a computer that is pink and snazzy and so I will do just fine blogging until Mommy gets more interesting. I think November has gotten to her. It is National Adoption Awareness Month, and Mommy and Daddy had a lot of stress during the years they were trying to adopt. I am glad they hung in there, so they could be my Mommy and Daddy. I know Mommy wishes that I could have the big brother Jacob, but Daddy says we just have to trust in the good Lord. So much in life is mystery. Like yams! What is up with that!?

So what I want to tell you today is that I had my blood drawn to recheck my thyroid numbers since I had an increase in my medicine a month ago. I think I am doing fine. But the endocrinologist says "show me the numbers". The procedure went well.... enough. Daddy put a cream on my arms before we left home that numbed my arms. I took some Ibuprofen for my teeth, and I think it helped my whole body. I also used some ora-jel. Don't know if that mattered, but there were a lot of things to numb me going on. We also went in the morning, when I was not tired or hungry. The girls did a good job. They found my vein while Mommy was still holding me, then they laid me down for the blood draw. I only cried sporadically, and I did not fight as hard as I usually do. It was quick and I soothed rather quickly afterwards. Then I was ready to greet my adoring fans with a big wave and a smile. I thought I saw Grandma and Grandpa, and I called out to them, but no such luck, it was just some other good looking older people.

This is me imitating Daddy! Daddy works on his computer all day. I don't know what he does., but this is my best impression yet of Daddy working. This is crunch time at the office. I think that means that Daddy might crunch his computer if things get too hectic. But seriously now folks. Daddy has a great job! He gets to work from home when he doesn't have to be in the office. That means that I can go by his office and wave at him. But I don't hang around for long, because his work is sort of boring if you are only 18 months old.

Kling-on Improvements

2010-11-18T18:17:00.000-08:00

In thinking about how to handle Olivia's "kling-on" stage, I wondered what would the Blessed Mother have done with Jesus. Back then, Moms kept baby/ children with them at all times. Ok. I was going to give it a try. Sort of.

When I went to the bathroom, I took her in with me. When I cooked, I set her at my feet. When I did laundry, again, at my feet. So basically, I was making her stay with me, although she was free to crawl away. It did not take too many days of this, and Olivia started crawling away from me. As of today, she has been spending very little time at my feet before crawling away. After dinner I took her in the 1/2 bath with me, and she nearly knocked the door down to get out. I may have outsmarted her! I hope Olivia doesn't read this blog post. I think she does sometimes. Because if she reads this, she will get clingy simply to prove my Blessed Mother and Jesus theory incorrect! Olivia likes to keep me humble.

Last week we had Olivia's 18 month photo taken. She has been to this photographer 2 times before. I warned the photographer that Olivia had been very clingy and I did not know how it was going to go. But as soon as Olivia saw the studio lights and props she was ready to perform! She and the photographer had a great time! We got some great shots!

We will see if getting Olivia's blood drawn next week brings back Miss Kling-on. I think that is when this all started the first time. But not too much we can do about it. With the hypothyroidism, there is regularly scheduled blood work. Hopefully her numbers are good and then she won't need blood work for another 6 months.

Today's Inspiration (Thanks Cathy and MaryTV)

2010-11-18T06:00:00.000-08:00

Prayer after Communion of Saint Padre Pio

Stay with me, Lord, for it is necessary to have You present so that I do not forget You. You know how easily I abandon You.

Stay with me, Lord, because I am weak and I need Your strength, that I may not fall so often.

Stay with me, Lord, for You are my life, and without You, I am without fervor.

Stay with me, Lord, for You are my light, and without You, I am in darkness.

Stay with me, Lord, to show me Your will.

Stay with me, Lord, so that I hear Your voice and follow You.

Stay with me, Lord, for I desire to love You very much, and always be in Your company.

Stay with me, Lord, if You wish me to be faithful to You.

Stay with me, Lord, for as poor as my soul is, I wish it to be a place of consolation for You, a nest of Love.

Stay with me, Jesus, for it is getting late and the day is coming to a close, and life passes, death, judgment, eternity approaches. It is necessary to renew my strength, so that I will not stop along the way and for that, I need You. It is getting late and death approaches. I fear the darkness, the temptations, the dryness, the cross, the sorrows. O how I need You, my Jesus, in this night of exile!

Stay with me tonight, Jesus, in life with all its dangers, I need You.

Let me recognize You as Your disciples did at the breaking of bread, so that the
Eucharistic Communion be the light which disperses the darkness, the force which sustains me, the unique joy of my heart.

Stay with me, Lord, because at the hour of my death, I want to remain united to You, if not by Communion, at least by grace and love.

Stay with me, Jesus, I do not ask for divine consolation, because I do not merit it, but, the gift of Your Presence, oh yes, I ask this of You!

Stay with me, Lord, for it is You alone I look for. Your Love, Your Grace, Your Will, Your Heart, Your Spirit, because I love You and ask no other reward but to love You more and more.

With a firm love, I will love You with all my heart while on earth and continue to love You perfectly during all eternity.

Amen

Center for Disease Control Guidelines

2010-11-17T12:40:00.000-08:00

Interesting guidelines from the Center for Disease Control (CDC) on indoor air quality:

C. Building Occupants

1. Non-Permissible Products

Scented or fragranced products are prohibited at all times in all interior space owned, rented, or leased by CDC. This includes the use of:

• Incense, candles, or reed diffusers • Fragrance-emitting devices of any kind • Wall-mounted devices, similar to fragrance-emitting devices, that operate

automatically or by pushing a button to dispense deodorizers or

disinfectants • Potpourri

• Plug-in or spray air fresheners • Urinal or toilet blocks • Other fragranced deodorizer/re-odorizer products

Personal care products (e.g. colognes, perfumes, essential oils, scented skin and hair products) should not be applied at or near actual workstations, restrooms, or anywhere in CDC owned or leased buildings.

In addition, CDC encourages employees to be as fragrance-free as possible when they arrive in the workplace. Fragrance is not appropriate for a professional work environment, and the use of some products with fragrance may be detrimental to the health of workers with chemical sensitivities, allergies, asthma, and chronic headaches/migraines.

2 If the HEPA filter requirement is not in existing leases and the lessor chooses not to adhere to this policy, then RPMO will incur costs to meet this guideline.

9Employees should avoid using scented detergents and fabric softeners on clothes worn to the office. Many fragrance-free personal care and laundry products are easily available and provide safer alternatives.

2. Tobacco-Free Requirements

In accordance with the CDC Tobacco-Free Campus Policy (CDC-GA-2005- 17) the use of tobacco products (including cigarettes, cigars, pipes, smokeless tobacco, or other tobacco products) is prohibited at all times. For more information regarding this policy, go to the following link: http://aops- mas-iis.cdc.gov/Policy/Doc/policy477.htm:

Outdoor environments in leased facilities not under full control of CDC and temporarily deferred locations will remain subject to the pre-existing policy,3 which states that smoking tobacco products is prohibited:

• In all interior spaces owned, rented, or leased by CDC • In government vehicles • Within 20 feet of building entrances, exits, and air intake ducts • Within 20 feet of the storage of flammable and combustible liquids or

gases • Within 20 feet of dumpsters provided for collecting combustible materials • Inside any covered parking that is physically part of or connected to a

facility where CDC workers regularly pass on their way to or from work • Within designated CDC “Smoke-Free Zones”

5. Housekeeping Guidelines

CDC will ensure that products used in the workplace, such as soaps, cleaning products, paints, etc. are safe and odor-free or emit low levels of volatile organic compounds (VOCs) to the fullest extent feasible. Only green cleaning products shall be specified and used within CDC facilities and leased spaces unless otherwise approved by the Office of Health and Safety.

CDC will ensure the use of housekeeping practices which are deemed safer for building occupants and the environment. Specifically, BFO will require housekeeping staff at CDC owned and leased facilities to:

8• Vacuum frequently and thoroughly using vacuums with high- efficiency particulate air (HEPA) filters.2 If carpets must be cleaned, steam or least toxic, non-petroleum based, fragrance- free all-purpose cleaner or carpet cleaner will be used

• Keep storage and janitorial rooms clean and properly maintained • Keep air handling rooms free of stored materials. If rooms are

used as storage spaces, ensure that proper airflow, clearances and cleanliness standards are enforced. Keep maintenance and operational supplies in order and properly labeled in a clean, dry room to prevent contamination of the air and infestation of insects and rodents

• Be trained by supervisors or through their contract company in the proper usage, handling, and labeling of cleaning products and hazardous chemicals as required by the OSHA Hazard Communication Standard (29 CFR 1910.1200)

• Keep waste containers away from air intakes and assure their regular emptying

And.... dead pests should be removed promptly from the premises! :-)

There is much more at: http://www.thecanaryreport.org/wp-content/uploads/2010/04/CDC-2009-Indoor-Environmental-Quality.-internal-policy542.pdf

Adoption Finalization One year ago today

2010-11-13T14:03:00.000-08:00

Today is one year since Olivia's adoption was finalized by the court. It is/was o

ne of those mixed feeling days for certain! Relieved to have all the legal stuff behind us, but knowing that the finalization would be a weird feeling for Olivia's very much beloved birth-mom and birth-family. As this year has gone by, we have realized that we have not only gained a daughter, but we have also gained the most wonderful extended family ever as we have been accepted into the lives of Olivia's birth-family. We never would have imagined the fullness of blessings that have been bestowed on us in having the love of Olivia's birth-families in our life! We love you all!

What spoon? But I side-sit!

2010-11-12T09:21:00.000-08:00

I wonder if any of you other Moms have experienced this? Olivia had gotten to be quite good with her spoon and self-feeding, and then suddenly lost interest. She sees the spoon in front of her with food on it and her hand becomes limp and she just has no interest in holding it and taking it to her mouth. She also has lost interest in throwing her spoon. That is progress! She will hold her spoon and take it to her mouth and put it down nicely on the tray or in an empty bowl when we are just practicing. But for the real thing, she is not interested. She is doing beautifully controlling her own straw cup. She picks it up off the tray and drinks and sets it down nicely on the tray. She is typically not throwing cups, spoons and bowls off the edge and at the wall any more! Praise God! She is self-feeding with her hands beautifully. And will throw a piece off the edge of the tray when she no longer wants that particular food choice. She does know the correct sign for "all done". She just picks and chooses when she uses it!

Olivia is accepting being put in "side-sitting" more and more these days and this is leading to getting in and out of sitting the right way more often. Before she always used the unapproved "Chinese Splits Method" which does make me cringe given I have worked so hard on the "pre" in and out of sitting exercises. But I do now see that my work was not in vain, as she is beginning to accept doing it the right way. I have a hard time feeling the urge to curtail all of her "illegal" moves, because I don't want her to stop doing everything altogether. But I spend lots of time trying to "catch" her before she does in the wrong way and get her doing it the right way with perhaps Olivia feeling as if she had done it all by herself the correct way. Olivia's podiatrist talked about how important HIP issues are for people with Ds. We have worked from Day 1 on protecting he hips. I hope it pays off. I heard recently of a child having surgery for hip dysplasia. God willing we won't go there.

We work and we work with our kids, but they are independent human beings. I try to remember that and respect her first and foremost. Well! On second thought! I LOVE her first! That is what they told us in the NICU! Love her! All the rest will follow suit! And I think they are correct!

Wordless Wednesday!

2010-11-10T09:31:00.000-08:00

(Signing "Daddy")

My Life as an 18 Month old

2010-11-08T16:44:00.000-08:00

Now that I am 18 months old, I have to let you know what I am doing. I still like to read. In fact, looking at books and being read to is my second all time favorite thing. My first favorite thing is listening to Music, and especially Barney's Greatest Hits CD. I am learning al the songs and actions for each song. I know Itsy Bitsy Spider, Wheels on the Bus, Pop Goes the Weasel and Do your ears hang low? I was impressed today that my Mommy's friend knows all of those songs too. Her boys taught them to her when they were small. Now they are tall. But they have a guinea pig, so they are cool fellas.

Now I bet you wonder what has me up on all fours. No, I am not creeping, I still crawl on my belly, but I considered creeping on all fours for a moment, because I saw my big sister who I adore.

Here I am crawling after her. Remember I just love her so much! She is such a great big sister! My other big sister is great too, but this is my oldest big sister.

Here I am adoring my big sister. She likes to talk to me from up on top of things. I think that she does that because I am taller than her now. I told her not to worry that she is short. It happens sometimes that some people are short. I assured her that I respect her even though she is height deprived.

Also, I don't like my mommy to sing unless I specifically request something. I much prefer listening to her iPod (on her iPad or iPhone.... I call myself an iBaby so that she has an interest in me LOL) I also love music boxes. I love to use mom's iPad for learning my vocabulary on iTots. I will study really hard and then when I learn them all I won't be interested anymore. That is what I do. I study a toy or an object as if it was the only thing in the world that mattered, and then when I have learned all there is to know about it, I am done with it. I can be that way about food too. The other week, I was really fixated on eating carrots, then I had no more interest in them.

In the eating department, I am working on controlling my spoon and cup. That means that I am learning to set them down nicely on the table and pick then up nicely and put them to my mouth, and then set them down nicely. So how is it going? Well, I am getting really good with my straw cup. And I am getting really good at controlling an empty spoon outside of mealtime. During meal time, I don't control my spoon very well. But I think I am making progress.

As far as signing goes. I am rather awesome. I sign a lot of things that matter, and don't bother with needless words. I can sign Daddy correctly now. I no longer sign bye bye for Daddy. I don't sign Mommy, but I say Momma. And I say it with gusto when I really need to get her cooperating with my plans.

I am getting my picture taken professionally this week. We will see if I cooperate or not. I have not decided.

Oh, and one more thing. I think the perfect Sunday afternoon is spent at Grandma and Grandpa B's house playing with my cousins (ages 5 and 6). They are so nice and I love to try to get their toys which are for big kids. I just adore my cousins!

Well, I am supposed to be asleep, so I better quit typing so that Mommy doesn't catch me still up after she put me to bed. Take care. Love, Olivia

Olivia Using Family Heirlooms!

2010-11-07T16:31:00.000-08:00

This is Olivia in Great Grandpa S's rocking chair. (My Mom's Dad's chair)

WWF: Klingon VS Pediatrician (Victory Klingon!)

2010-11-05T10:41:00.000-07:00

Today was Olivia's 18 month well baby visit. Olivia has become a real Mommy and Daddy's girl. That means she clings to us and is very cautious around other people. (although Grandma B and Olivia are still best Buddies!) The doctor told us that since Olivia has Ds that she is just hitting this normal developmental stage at a later age. Usually it appears at 9 to 12 months old. He said that this is a good sign of a securely attached child, who knows that Mommy and Daddy are safe and that to be wise is to study other people good and long before getting involved with them. It was good to hear that our Klingon is normal! In fact he says he gets concerned when he doesn't see a child go through this "stranger danger" phase. The wise doctor did Olivia's exam while Olivia was sitting on my lap. She tolerated it better this way. The nurse that gave her the shot was careful to make sure that Olivia could not see her, and that I was completely blocking Olivia's view of the mean old nurse.

Doctor was very pleased with how Olivia is progressing both developmentally and in her health. Yes, she is developmentally delayed, but she keeps progressing at a good solid steady Olivia pace.

She is now 35% for weight: 23 lbs 5 oz
25% for length: at somewhere around 30 inches or so.
Her head circumference is still in the lower percentiles 13%

The good news is, as far as the doctor is concerned at least, is that Olivia did not pull his hair or his ear this time. Perhaps that is the real reason he decided to examine her differently. Last time he really got a lesson in Olivia's ability to grip on to hair and ears. I think she punched him once or twice when he was looking into her ears. But then again, she had an ear infection at that last visit and was not a happy camper.

He believes that her teeth that have been causing so much trouble coming through for the past 6 weeks will come through prior to her entering college. Thus we are applying for early admission!

Back to Her Normal Self

2010-11-02T10:02:00.000-07:00

Thanks for everyone's concern over Olivia's health. Apparently she had just been a bit under the weather. We were able to go to Grandma and Grandpa B's house on Halloween and see her cousins. Olivia did NOT want to wear her pumpkin costume though. Next year we need to find a more comfortable costume. She should be walking next Halloween. Olivia was relieved to learn that she doesn't have to wear a costume for Thanksgiving or Christmas. All she has to do is eat and play with toys. Both activities she enjoys!

About Olivia's sick day: Our guess is that she was just a bit under the weather and that with her low muscle tone that she just became all the more limp and passive.

But she is not limp or passive now! This was the scene when I was changing her diaper this morning. I do have some photos of her without diaper and crawling around. But she begged me not to post the truth!

What Mom? You never seen a baby avoid diaper changing before?

Trying to get her to settle down, I gave her the iPad with the flash cards. It did the trick! She is getting really good at using this program all by herself!

Wow - Never Missed a Day During October

2010-11-02T03:18:00.000-07:00

Guest post from Peter …

I want to publicly congratulate my loving wife on posting everyday during October. She never missed a day and only a couple of times punted the ball. She posted every day even when it meant she had to stay up a little latter at the end of a long day of caring for Olivia. I think we all learned something this month about Down syndrome and we certainly all got to see Olivia’s antics. Olivia made a lot of progress during October, and everyone had a front row seat. We all need to continue to spread the word that, at the end of the day, people with Down syndrome are people. They are valued and cherished by their families just like everyone else. It doesn’t matter if it takes them a little longer to learn something. The world is enriched by their presence and we need to stop the insanity of resulting in the abortion of 90% of children diagnosed prenatally with Down syndrome. We can’t imagine our lives without Olivia. Thank God for her birthmother!

Happy Pumpkin Day!

2010-10-31T10:59:00.000-07:00

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!

Cutting Mom and Dad Down to Size!

2010-10-30T18:21:00.000-07:00

(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.

What a little extra thyroid medicine will do!

2010-10-29T18:12:00.000-07:00

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! :-)

Look Mom! No hands!

2010-10-28T17:23:00.000-07:00

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!

Wordless Wednesday!

2010-10-27T17:27:00.000-07:00

Olivia Befriends Oprah

2010-10-26T17:55:00.000-07:00

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.

Breakfast of Champions!

2010-10-25T17:32:00.000-07:00

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!)

Playing with Crayons

2010-10-24T11:51:00.000-07:00

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)

Today's Guest Blogger

2010-10-23T18:05:00.000-07:00

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.

Brushing Teeth the Montessori Way

2010-10-22T16:15:00.000-07:00

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.

Ligamous Laxity continued

2010-10-21T17:57:00.000-07:00

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?