High Hopes For Olivia: Day 18

Thursday, October 22, 2009

Day 18

Taking off yesterday was nice. Olivia slept 13hrs and 20 min. last night. She woke up happy and refreshed! She had plenty of beauty rest and it was perfect timing because she had her school picture today. She looked super cute.

Olivia was cranky arriving at the center. She cried going in, and for a little while inside. She was fine for awhile, got whiney again, and got over it. She stayed at the bottom of the chamber, which I really appreciate, and was happy getting out. The tech lifted her off the stretcher and she took his hand to go get a sticker. She then enjoyed some time with the receptionist admiring her and her stickers. She is making more and more friends! You can tell the staff is falling for her. Who could blame them?

When we went outside, Olivia ran to get a rock. It was a new run! It was a REAL run, not just a fast walk. The true definition of running is when at one point, both feet are off the ground. It was great! It was adorable. Jumping is next!

3 comments:

Jennifer ThayerOctober 22, 2009 at 6:17 PM
Hi Mary!
A real RUN?! How awesome! Get the videocamera going!
I love reading your posts! Getting to see Olivia go through the HBOT is so neat.
Have you noticed a difference in yourself?
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OliviasMommeeOctober 22, 2009 at 8:44 PM
I feel like its a healing bin. I go in with a sore throat, I come out feeling better. I had a sore elbow..now all better! I had an injury to my shin, its healing up nicely. I can only hope and pray that its healing Olivia on the inside...healing anything that is keeping her from talking.

Thank you for your comments! I love to come and see that someone has a response to what we are blogging.
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Owen's MomOctober 23, 2009 at 5:34 AM
That's so awesome! I love how you describe it. A healing bin.
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Olivia's Story

Hi, I'd like to tell you about my daughter, Olivia. Olivia was born in the natural way after a wonderful uneventful pregnancy. However, it was noticeable from the start that Olivia seemed a bit weak and quiet. She didn't make out her first cry until she was about a minute old and didn't make much noise after that. She was transferred to the special care nursery when she was less than a day old because she needed some extra oxygen. She needed to stay in the hospital for 5 days because she became jaundiced and needed to go under phototherapy.

Olivia was a good baby...too good actually. She was happy to just “be.” She didn't cry much, if at all. She stayed where you put her and never got into trouble. As you probably know, this is not the norm. By 3 months old, she wasn't holding her head up well, by 6 months she wasn't sitting up unsupported, and by 12 months, she wasn't crawling, pulling up to stand, or walking. At this point, we started seeing a neurologist, geneticist, and Early Intervention. We started physical therapy right away with Early Intervention and additional services at St. Peters Hospital. Olivia seemed happy to meet new people, but it was very hard for her to do the things she was supposed to be doing at her age.

Eventually it became more apparent that Olivia needed even more support. She started receiving occupational therapy. Olivia didn't like to use her hands. She would pull them away if you touched them and tried to play with her toys using her feet. She also started speech therapy because her facial muscles were weak and relaxed. She kept her mouth open most of the time and drooled. Most importantly, she didn't start saying any words at the age when other children do. Lastly, Olivia also received play therapy. This helped her develop cognitive skills through play.

Olivia is now 3 ½ years old. She is walking with the assistance of custom braces that support her feet and ankles. She gets around pretty well, can climb on toys with assistance, can go up stairs with help. Olivia still can't jump, but she wants to and tries! She can't ride a tricycle or run around like the other children her age can. She is able to make sounds, but does not speak. She attends a special preschool program that is teaching her to communicate using PECs (picture exchange cards) and is really catching on! She knows a few signs, but still has difficulty using her hands so is limited using sign language. Olivia can't dress herself, is working on feeding herself, and cannot draw. However, she loves to paint and play with playdoh!

Olivia has been diagnosed with hypotonia, which is low muscle tone. The doctors have not found a cause for it, and it has no cure. All her other tests, bloodwork, genetic and metabolic workups, brain MRI, EEG, have come back normal. Simply said, the doctors cannot find out what is wrong, but it is clear to them that all is not right.

Olivia is a beautiful and happy little girl. She smiles, laughs, sings, and gives loving hugs and kisses. She enjoys meeting new people and making new friends. Even though she cannot talk, she is so friendly, that people are drawn to her and quickly fall in love with her.

At this point, there is no cure for her undiagnosed condition. We are doing everything we can think of to help her in these most precious early years. We are exploring every option, medical and alternative. As time and finances permit, we'd love to try hippotherapy (therapy using horses,) aquatherapy (therapy in water.) hyperbaric oxygen therapy, and music therapy. We take it day by day and have high hopes for her future.

Thankyou for taking the time to learn about Olivia.

High Hopes For Olivia

Thursday, October 22, 2009

Day 18

3 comments:

Olivia's Story

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