High Hopes For Olivia: Day 20

Monday, October 26, 2009

Day 20

Olivia made her “celebrity” entrance today. She was very happy to come to the office. She walked through the doors, stopped, and started waving and calling out. It was really cute. Its like she was saying “I'm here!”

She was ready to get into the chamber and now knows when I say “get close to mommy” it means for her to put her head down. The tech closed the door and started the oxygen and pressure. When I first felt the pressure on my ears, Olivia smiled and giggled. It seems like she enjoys it now. She doesn't rub her ears, doesn't whine, just smiles and tries to interact with the people around. We have gotten comfortable in there now. I don't think I lost any weight (it would've been nice) but it seems much more roomy in there somehow. The stretcher even had the head inclined a little bit today and it didn't bother me.

20 dives down, 20 to go. We have an evaluation with the pediatrician this week. I'm going to review all my blog entries just to remind myself of where we started and see where we are now in this process.

Thanks for following along!

1 comment:

Owen's MomOctober 26, 2009 at 7:53 PM
Wow! 20 down. That went fast! I can't wait for your evaluation to hear what they say..

Good Luck!
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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

Monday, October 26, 2009

Day 20

1 comment:

Olivia's Story

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