Jesus is Born! Gloria!

HAPPY CHRISTMAS!

Olivia had a great time celebrating Jesus' Birthday!

She began her day with a special morning prayer:

"Happy Birthday Dear Jesus

Thank you for this Beautiful Christmas Day!"

And a Beautiful Day it was indeed!

We had to keep reminding her that it was Happy Christmas! Not Happy KissMas!

Once again, a holiday just means extra kisses all around!

Olivia is so very very loved!

Daddy and Olivia playing with her Busy Box.

This one is by Tiny Love and is a wonderful Busy Box.

Tiny Love also made the mobile that she enjoys so much!

Santa filled her personalized stocking. Each of us have a personalized stocking now.

These home-personalized stockings were

a very loving gift from her birth-mom, siblings and birth-grandma.

Olivia opened her gifts in her pajamas like any self respecting child!

Daddy helped her pose by the tree.

Daddy bought Olivia a special Christmas jacket. Here Olivia poses with our Christmas Elf.

This is the Famous Christmas Elf who hides in various places all during the Christmas Holiday. One never knows where he will show up. Presently, he is sitting under the tree in the basket of stringing beads, but he has been known to show up hanging from the chandelier or peering over the monitor of the computer.

Merry Christmas

Olivia, Mommy and Daddy want to wish every one a Blessed Christmas. Olivia has been a giggly little girl ever since waking up from her nap today. She wanted to share a little of her joy and peas on earth with all of you. Merry Christmas!

Head Control Milestone! Hooray!

This is not the best photo of her head control. I will have to take a better one. Anyway, the BIG news to hit our home is that at 7 months old, Olivia has head and neck control! This was more delayed than the physical therapist (PT) would have expected. She was not sure why. But I think it is related to the back arching trouble she had for so many months. At that time we had a different PT. The PT signed off on the official milestone on Friday! Yay team!!!! Olivia can now do what she wants to do with her head and neck when she wants to do it! And other than when we are holding her and she decides she wants to do something that would be dangerous, we can basically trust her to take care of her own head! I have always said that there would be dancing in the streets when this milestone occurred as at times it seemed that we would never get here. If it was not so COLD outside I just might be dancing in the street!!!!

As you can see from Olivia's tummy, which Daddy affectionately calls her "bowl full of jelly", she is a good eater! The homemade pureed baby food seems to have been the magic trick to bring about so much development recently! She is also vocalizing more sounds and trying to communicate much more! The other big development is that she now is rolling around with ease on the floor to get places. Look out world! Here comes Olivia! The other development is that her hair is growing in. It is most definitely going to have some amount of curl to it.

I will try to post some more photos of her developmental milestones soon. We have been very busy around here with Christmas preparations (gift buying and wrapping, getting cards out etc) and this is the busy season at work for Peter, so long days and long nights and no such thing as a weekend. This should be the last week for the hectic work schedule. Daddy does make time for Olivia each morning before starting work, so he has his priorities in place! :-) I think it is nice to start the day with a smiling happy chuckling baby before working with engineers and inventors the rest of the day :-).

Thanksgiving week visitors

The week of Thanksgiving gave us the gift of many visitors! Olivia had a GREAT time with everyone. She loves novelty and having different people around. I think Mommy and Daddy get to be rather boring to her after awhile! :-)

Aunt Connie was here Sunday and Monday. They had a great time! Especially when Mommy and Daddy went on a date to Saugatuck and Aunt Connie babysat and Olivia took a 3 1/2 hour nap! (Olivia has taken tiny naps everyday since then for Mommy)

Grandma and Grandpa B helped Olivia celebrate her First Thanksgiving

"Uncle" Eddie and "Uncle"Stephen (cousins) came to visit on Saturday. Olivia thought they were a lot of fun!

Happy Thanksgiving

Olivia's first turkey drawing using an outline of her hand. Happy Thanksgiving to all!

No more mohawk comb over!

Olivia got her first haircut today! Aunt Connie did a wonderful job and Olivia was very calm and did not even seem to realize what was happening. The top of her hair was long in the middle and it would flop to one side in an odd way. She also had one lone curl on the side. Now her hair is more even, and looks great! It still has length and curl on top.

So, Olivia had her first haircut at 6 months and 18 days old. That is written in her baby book. Yes, we did save her hair!

Some old and new videos

I wanted to put the oldest video up and then the newest to show her progress over the past couple months, but I accidentally did it in reverse.

Here is the newest video:



Then October:



Then September:

Photos of Our Forever-Daughter!

Our family! Cats and people! Everyone loved!!!!

Olivia counted 2 million kisses today!!!!

That is what being adopted means!

It means you get kissed 2 million times!!!!

(as opposed to the normal 1 million times a day!)

And every newly adopted daughter needs

to take some time to do her studying at her desk!

We are so happy as we bask in the reality that Olivia is our Forever-Daughter!

It has been so very many years in trying to get to this point, that it is all the more amazing of a feeling. Tonight I held her just a bit longer before putting her in her crib for the night as I simply savored the reality that we officially and legally have a daughter. Olivia has been our daughter in our hearts since late February, and we certainly have been BEING her parents. Now it is just official and legal, and it feels awesome! And some would say miracles don't happen! Miracles DO indeed happen! Praise God!

Adoption Finalized

We learned this morning that the judge signed the order finalizing Olivia's adoption last Friday the 13th. Praise God for bringing Olivia into our lives and for bringing us to the end of this long journey.

Video- Olivia eating cereal

Just uploaded video to YouTube

First Try at Rice Cereal

Olivia calmly took her first mouthfuls of cereal today.

... and occasionally said this stuff feels odd in my mouth :-)

This was Olivia's first try at eating solid food. Grandma B and Daddy took photos and movies while Mommy tried her best to feed Olivia. We have been getting advice from the Speech Therapist and also information from a DVD from TalkTools. Olivia did not spit the food back out, but let it be in her mouth and tried very calmly to figure out just what to do with it.

It will take a while before Olivia is truly up to speed on eating. But this first try went better than we had expected.

A movie to Celebrate 6 Months!

Happy 6th Month Birthday

Today is 6 months since we received the phone call that Olivia had been born! Wow! It is hard to believe that it is already 6 months. We think that since her development is slower than for a typical baby, that time goes much slower also. There is lots of time to savor every step along the way. Sometimes with a typical baby, the rate at which they develop can make ones head spin! We are lingering in the luxury of enjoying every step along the way. (and making lots of lemonade out of any available lemons to sip as we wait!)

Olivia has changed so much from that 4 lb baby whose skin hung on her bones. If you remember, she was initially on oxygen, IV's, feeding tube, in an incubator, and on a billiblanket for jaundice. In addition, she was hooked up to all sorts of monitors. We would sit with her and watch her monitors and pray that everything was going to be alright. Praise God, 13 days after she was born she came home from the NICU! Today, Olivia is a healthy "strong" baby with Down syndrome who is developing very well considering the circumstances. Today we began putting small blocks into an old oatmeal canister. Plunk Plunk! Very exciting! The blocks are small enough for her to hold, and Mommy helps her get them to drop into the canister. (all the while providing necessary head and torso support... but the support needed for her head lessens everyday). Olivia enjoys knocking blocks over! And she enjoys pushing the top to make it go around!

Praise God for the gift of Olivia in our lives!

and

God bless her most wonderful birthmom for entrusting to us this precious baby, Olivia!

We think of the birthmom everyday, and thank God for such a wonderful woman!

Well baby- 6 month

Olivia had her 6 month well baby pediatrician visit today. She is indeed a well baby! Praise God! She is still a healthy baby with Down syndrome! She got one shot. We will see how she does with that. Right now, she finally settled down for a nap.

The official weigh in results:

Weight: 15 lbs 8 oz

Length: 24 1/2 inches

Head Circumference: 16 1/4 inches

This means she is:

40 % for Weight

11 % for length

17 % for head circumference

We are going to retest her thyroid numbers to be on the safe side. She has been sleeping 15 hours total a day. That is good. But then again it could be cause for alarm. So, it is better to be safe than sorry.

Olivia did very well at the doctor. No crying through the exam, nor any crying with the shot. She just focused her eyes on Mommy, and somehow we made it through without a tear. Praise God! Mommy and Daddy get so nervous at these appointments. We do our best not to let Olivia see our anxiousness. I think we do pretty well. We were more relaxed at this appointment than at the last. We just love her so very much!

Thursday it will be Olivia's 6 month birthday! 6 months ago our life changed! It changed in unexpected and marvelous ways! No one could have prepared us for the Ups and Downs of being Olivia's parents! We have been so blessed and feel God's grace has made this all possible. Without the grace of God, things would never be going as well as they are, and we would have never made it through the tough times. There will surely be more tough times as we parent Olivia, and God will be there at those times, too. God is good and merciful and almighty!

Happy Halloween!

We dressed Olivia as a bunny for Halloween and went outside for a Fall Photo Session. Daddy was photographer.

Note from Olivia: Daddy and Mommy got the idea to dress me up as a bunny, because my pediatric endocrinologist had an "Anne Geddes baby in bunny costume" photo in his office. So not only do I have to take medicine everyday, but I had to get all dressed up in a bunny costume due to our trip to see the doctor at Devos. But I am a good sport! I did not mind the costume too much! I did not smile! But I did not cry or complain either. Sometimes babies just have to humor parents!

Mommy and Olivia had so much fun!

Looking at Mommy:

Olivia and her first pumpkin:

Inside getting dressed:

Are you sure this is such a great idea?

Oh dear me!

Happy Halloween!

Growing Bigger!

Olivia GREW since last week. We put her on the baby scale today and she weighed 15 lbs 11 oz. That is a 14 oz gain since last week! That is her biggest gain thus far. So then we decided to measure her, because she looks longer to us, but actually looks thinner in the face, legs and torso and waist. She grew one inch! She is now 25 inches!

This puts her at about 50% for weight and 25% for height. One would expect a person with Down syndrome to be shorter and weigh more for their height. Sometimes babies with Ds can weigh less. But since she is staying healthy she is keeping a good weight. She eats well. She usually eats about 30 oz. When we first brought her home from the NICU, she was eating only and ounce or two at a time consistently, But was eating 8 to 10 times a day! Now she eats 4 times a day!

The next 4 working days are full. Olivia has Speech therapy, Physical therapy, Social Worker visit and Pediatrician. She keeps our calendar full!

The bracelet was a baby gift from Aunt Jen and Family. When Olivia received it, the bracelet looked HUGE! Now it fits quite nicely! Olivia is our Little Miracle! She just is not as super tiny as she was 6 months ago. That is progress!

These are some photos to compare!

Just thought I would offer some points of comparison. Photos taken while in the NICU to photos taken the other day! My how far we have come!

Olivia was born weighing 4 lbs 3 oz

Today she weighed in at 14 lbs 13.5 oz

She was 17 1/4 inches at birth

Now she is about 24 inches

Down syndrome IQ Statistic

This is a really interesting statistic. Since the time when parents starting raising their babies with Ds at home, instead of institutionalizing them, and providing them with early stimulation and intervention the average IQ in the Down syndrome population has gone up 20 points. If your not familiar with IQ scales 20 points in enormous!! It moves you up an entire category- like from severely impaired to mildly impaired.

Adoption Updated

We have been asked how the adoption process is coming along. Wonderfully is the answer! We are in the home stretch! We have one more supervisory home visit by the social worker, and we have been told by her that everything is just a formality now. Depending on the judge, we could have everything legally finalized as soon as November 17 or the December 26 date may hold true. The social worker is pushing for November 17 or shortly afterwards. This date would be 6 months from when we brought Olivia home from the hospital. The December 26 date is 6 months from when Olivia was officially placed with us for adoption and no longer considered our foster child, but is now considered a child placed for adoption. This is all per state requirements for adoption. Every domestic adoptive family in our state has to jump through the same hoops. Needless to say, there will be much to celebrate in our family when the adoption is finalized and our sweet Olivia can share our last name!

Early Intervention ready

St Joe Michigan!!!! Yay!!! The beach!! Cannot wait to ride the new carousel!!!!
Studying!! These one picture per page books from Beyond Play are her favorite books these days. Well, the truth is that if she can have someone read Five Little Ducks then that is her favorite book to have read to her. But she loves to look at these picture books independently.
Friday Mommy went to the Early Childhood Development Center to put in place Olivia's Early Intervention Plan. I think they call this either an IEP (Individual Education Program) or at this point in her life it may more accurately be referred to as an IFSP (Individual Family Service Plan).

Olivia will have PT (Physical Therapy) every other week. The areas to work on the most at this point are her head and neck control and developing strength in her torso/ trunk. Her body used to be a "wet noodle". Now it is a partially cooked noodle. Al dente! But maybe a bit firmer! She is most definitely gaining in strength everyday. We are teaching her to pull her hands in up by her chest when she wants to get UP from her crib. She is catching on and will pull her hands in and smile big smiles! So pleased with herself! And probably mimicking Mommy and Daddy's proud smiles back!

Olivia will have ST (speech therapy) once a month. The OT (occupational therapist) is on a more limited need schedule as Olivia is doing nicely in her Fine Motor skills. There will be a monthly phone call from the OT in the least. Olivia is doing nicely in her cognitive development and therefore does not currently qualify for Special Education and thus the Special Ed Infant Toddler Teacher will not be providing services. Good thing Mommy has the background in Montessori Education, because for now, Mommy is homeschooling this special needs infant!

October is National Down syndrome Awareness Month. I hope that by reading our BLOG you are learning bits and pieces about Down syndrome. Olivia is a very healthy baby with Ds. Not all parents are so lucky. 50% of kids with Ds have some sort of heart defect. Other kids have digestive issues and are on feeding tubes. There are other health issues too! Some kids can be very very sick. Olivia's only health issues are hypothyroidism and allergies. But those are easy to deal with in comparison to what some kids have. We marvel at her everyday and thank God that she was born!!!! 9 out of 10 women with a prenatal diagnosis of Down syndrome will choose to abort their baby. This birthmother received pressure to abort Olivia. The thought truly sickens me. A world without Olivia fills my eyes with tears! I hold her all the more closely and the thought occurs to me: What if Jesus had Down syndrome!?!? Surely Mary and Joseph would have felt just as blessed and surely He could still have been the Son of God and surely He would have still suffered and died to save us! Personally, I think that a grave injustice is done to women when they are encouraged to abort a baby with Down syndrome. They are having so much joy stolen from their lives. (or the lives of an adoptive family)

November is National Adoption Awareness Month. I will have to write a little about the Ups and Downs of Adoption. We surely have a thing to say about that! It is nice to be on the Up Side of Adoption now!

Smiles

This is what we are seeing so much of these days! Smiles! It took a long time in coming, and is all the more wonderful for the waiting! Thanks Emily for pointing out this photo of note! It really does capture the mood of the day!

Lots of Smiles

Lately Olivia has taken to smiling! Seems to be her favorite thing to do. The next favorite thing is laughing. It is so wonderful to see this!!!! The first three months of her life there was really no social interactions. Then at 3 months the smiles started. But they were small and few and far between. Things have really changed for the better! It is great!

The pediatric endocrinologist called to say that Olivia's thyroid numbers look good and to continue at the same dose of medicine. Recheck will be in January. At this time we will head back up to see the doctor. I guess Olivia's sleepiness and low endurance are more of a Down syndrome thing than a thyroid thing at this point. I hear that babies with Ds tend to be more sleepy, but then look out! They can be typical toddlers who would rather not take a nap. Sounds like fun! :-)

Freshman Ten

We weighed Olivia today and she has gained 10 pounds since she was born 5 months ago!

She now weighs 14 lbs. 3 oz.

That is a gain of about an ounce a day since she was born.

P is for Penguin

Fair Indigo had this adorable organic cotton shirt on sale this summer.

How could I resist!

Evaluation updates

Over the course of the past 6 days, Olivia has had numerous evaluations: Pediatrician, Physical Therapist (PT), Occupational Therapist (OT), Speech Therapist (ST), Infant Toddler Teacher, and then finally today the Child Psychologist doing the Bayley Developmental Assessment. Yes! We have been busy!

Olivia is on track in all areas for a typical 3 to 5 month old, except for her head and neck control. The head and neck control is being delayed by weak muscles in the front of her neck and chest. We keep working on the exercises and continue to have patience. It will come, it just comes more slowly than with typical children. But we are thrilled that in all other areas she is on track! The Cognitive Evaluation was also very positive! She has such good use of her hands, and eye hand coordination, in addition to concentration that it was easy for the Psychologist to assess her cognitive development. (at least that is what she told us) Although we have been told that at some point kids with Ds fall behind their peers, we are not seeing it yet. As someone with a background in Montessori Education, I will just keep believing in her potential and trying to provide her the best environment in which to develop to her fullest potential. Olivia is exciting to work with and watch. The toy she is playing with in the photo is her current favorite toy. She plays with both hands, brings it to her mouth, studies it, drops it and picks it back up again and throws it :-) .

Today we watched as she purposefully rolled from her back to her stomach. She had been having difficulty with this move, as her head simply did not want to go the rest of the way over. When she has been laying on the floor and practicing, Daddy and Mommy have sat by quietly in the background with silent cheers so as not to disturb her concentration. It was so awesome when today as we watched she actually did it! We quietly high fived it! And watched her as she enjoyed her tummy lying position that she had achieved all by herself! Reminds me of my niece who is famous for saying, "I do it myself!" We think Olivia will be an "I do it myself child" also!

The blood test to check her hypothyroidism is next week. We will be surprised if it is in the therapeutic range. Some days I feel that it is and other days I question it.

Michiana Down Syndrome Walk

Team Olivia!

left to right: Aunt Cindy, Cousin Stephen,

Uncle Doug, Terry (cousin- in- law), Daddy,

Great Aunt Jo, Sheila (1st cousin once removed & Terry's wife!),

Grandma B, Cousin & godfather Eddie,

Aunt Connie/ godmom was with us in spirit from across the street where she was hosting an MDiv weekend for the Diocese of SB/FW

Team Olivia raised $1150 in donations! Thanks to everyone who so generously donated!

Daddy went in place of Mommy after we talked to the doctor on Thursday who informed us of everything going around these days and the realization that Mommy getting exposed to things will just increase the likelihood of Olivia getting sick. Olivia and Mommy "walked" at home in the spirit of the day! Next year we will all be there!

At the Lake and Ds Walk update

Wanting to enjoy the last beautiful days before Fall and Winter are upon us, we headed up to the Lake to see Uncle Dick, Sr Veronica, and Y (and we saw the nice neighbor, too!)

It was a bit windy and cool, so Olivia basically just sat, cuddled and then slept. She interacted a bit. But was mostly just a bit overwhelmed by the breeze and the hat she was wearing. It was wonderful to show Sr Veronica how much Olivia has changed since the Reunion in July.

Team Olivia is gearing up for Saturday's Down syndrome Walk. Thanks to so many generous people!

Daddy will be babysitting for Olivia, who is on doctor's orders to stay out of crowds this cold and flu season. Preemie, low birth weight on top of Ds puts her at greater risk for being hospitalized as the result of a simple cold that gets out of hand. Our goal is NO illness this Winter. But we know that may not happen despite our best efforts. Should we end up in the hospital with Olivia, the Good Lord will strengthen us as He did the weeks we were in the NICU.

Our Training Buddies for the Ds Walk are:

Mommy

Grandma B

Uncle Doug

Aunt Cindy

Cousin and godfather, Eddie

Cousin and all around great guy! Stephen

Great Aunt Jo

... and anyone else who cares to join in on the fun!

Olivia continues to take her hypothyroid medicine every morning. We see some improvements in her, but we are suspecting that her TSH and T4 are not yet normal. These will be retested in October. The other test in October is another hearing test. She passed her newborn test, but will have a hearing test every 6 months until the age of 3 per Ds Medical guidelines

4 months old video

I have made a new video of O to show you what she is doing these days. Since on the hypothyroidism medicine we are seeing great improvements from where we had been the last month. She is stronger, can stay awake longer, happier and more alert. She is making great progress in head and neck control. She should get there by the average month for Ds for this milestone of 4 to 5 months. She is doing better in a supported seated position and is more attentive during story time. O is interacting better with her environment She is watching her rattles and moving them more purposefully. And so much more! Thank the good Lord we found this thyroid issue so early! It makes all the difference!

Michiana Down Syndrome Walk

Team Olivia is ready to Walk!
We would love to have you join us!
Saturday, September 26, 10 am to 1 pm at the Stephan Center at Notre Dame
It is a lot of fun! Bring the kids!!!!

Our Walk Site has more information

If you feel you are able to donate to this great cause, it would be much appreciated. But we know times are tough these days and not everyone is able.

Celebrating the Gift of Olivia in our lives!!!! Such a great feeling!!

"Labor Day" video

O is learning to play in a supported sitting position. She was originally not too keen on the idea as playing in lying down positions seems sufficient to her. She needed some motivations to actually sit and not straighten up. Balls, tops and as you can see, Uncle Dick are all pretty good motivators!

Medicine going well

Giving the medicine is going well. This special medicine bottle makes it very easy.

We think O is already perkier. All in all, we are pleased thus far with how treatment for her hypothyroidism is going.

Thyroid update- change of plans

We received a phone call yesterday that changed our plan of attack for treating O's hypothyroidism. The pediatric endocrinologist at Devos Children's Hospital wanted to see her today! This doctor has a special interest in hypothyroidism and has many patients with Down syndrome.

Through God's grace, O handled the car ride wonderfully. She usually does horribly in the car. Praise God!
We hit the road at 8 am and were home by 1 pm. A whirlwind trip!

The pediatric endocrinologist confirmed what was suspected, that O has hypothyroidism. He doesn't think it was congenital, but the bloodwork from the NICU is somewhat inconclusive on that point. We will start the medication tomorrow and follow up with bloodwork in 1 mos. Sounds like we can begin to see somethings, such as the overwhelming fatigue, improve in as little as 2-5 days. He will continue to be O's endocrinologist for the time being. We will go back to see him in 4 months.

The doctor was great. Even though they were squeezing us in, he and the senior resident took tons of time to review all the records, etc. and to do a thorough physical exam. They were great at educating us and answering all our questions and concerns. While the diagnosis and treatment plan did not change (we didn't expect it to), we were comforted knowing that everything was carefully considered and that a quick diagnosis wasn't made based on only a brief phone consult with an endocrinologist and some lab results. It gives us far more confidence that we doing the right thing for O. Our pediatrician handled this so very well! She said the right thing, apparently, to get O into see the specialist so incredibly quickly!

Thyroid problems effect about 50% of all people with Down syndrome before they reach the age of 20. Very common. Treatment typically goes very well.
We are blessed to have found it early before it would have much time to slow her cognitive development.

The doctor said that pediatricians cringe when someone says that they have a good baby who seldom cries. He says that usually indicates an unhealthy baby. O has gone from being a colicky baby to being a good baby who seldom cries. Not a good sign. So, we may hear more crying from our healthy baby soon! And she should sleep less than she has been sleeping. It will be interesting! :-)

What Can a 4 month old tell us about Jesus?

Turns out quite a bit. We have been talking to O about Jesus from the day she was born. Today, we asked O what she knew about Jesus :-)

We also asked her whether it was time for a bottle and bed ...

Thyroid update

Just spoke with O's pediatrician, who managed to consult with one of the pediatric endocrinologist from the hospital where O was born. He agreed that it appears to be hypothyroidism and instructed her on what dosage of medication to start and when to repeat the labs. So, we should be able to get the med tomorrow and start it Thursday AM. While it was a challenge to wrestle it to a conclusion, we now have a treatment plan to start working on. Thank God!

Away Game Uniform

O wanted to show off her away game uniform. She says that she won't be starting in the game, because she does not have a helmet that fits and she does not yet have head and neck control.

But when those things get solved, look out Notre Dame! Go Irish!