Friday, December 24, 2010

Merry Christmas


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

Thursday, December 23, 2010

Not well, but improving

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)

Sunday, December 5, 2010

Sledding for the First Time

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!!!

Friday, December 3, 2010

On and Off the Horse

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!)

Thursday, November 25, 2010

Thanksgiving morning at our house

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!

Wednesday, November 24, 2010

Working and Playing - by Olivia

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.

Tuesday, November 23, 2010

Olivia Hijacks Blog

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.

Thursday, November 18, 2010

Kling-on Improvements

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)


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 

Wednesday, November 17, 2010

Center for Disease Control Guidelines

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!  :-)  

Saturday, November 13, 2010

Adoption Finalization One year ago today

 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!

Friday, November 12, 2010

What spoon? But I side-sit!

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!

Wednesday, November 10, 2010

Monday, November 8, 2010

My Life as an 18 Month old

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

Sunday, November 7, 2010

Olivia Using Family Heirlooms!

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

Friday, November 5, 2010

WWF: Klingon VS Pediatrician (Victory Klingon!)

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!

Tuesday, November 2, 2010

Back to Her Normal Self

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

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!

Sunday, October 31, 2010

Happy Pumpkin Day!

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

This photo shoot is so exciting!

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

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

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

This photo is not too bad either.

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

Alright, I can give you some more smiles.

Still smiling...

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

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

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

Saturday, October 30, 2010

Cutting Mom and Dad Down to Size!

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

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

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

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

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

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

Friday, October 29, 2010

What a little extra thyroid medicine will do!

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

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

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

Thursday, October 28, 2010

Look Mom! No hands!

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

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

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