Monday, September 28, 2009

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.

Sunday, September 27, 2009

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!

Monday, September 21, 2009

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:
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

Tuesday, September 15, 2009

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!

Tuesday, September 8, 2009

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!!

Monday, September 7, 2009

"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.

Thursday, September 3, 2009

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! :-)

Wednesday, September 2, 2009

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 ...

Tuesday, September 1, 2009

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!