High Hopes For Olivia: Day 13

Wednesday, October 14, 2009

Day 13

Olivia was super vocal today! She was babbling away, singing along with me, and she answers back with a sound when you ask her a question. She knew the end of the dive was coming when she saw the tech come around to the side of the chamber. She's well aware of where the door is. When the door opened, she cheered! She ran up to the tech and hugged her. She took her by the hand and they ran over to where the stickers are kept. She's loving the stickers! We are on our way home now and she's sleeping. We decided next week to take Wednesday off to see if that helps Olivia get more rest. Her teachers keep writing how tired she is. On a very positive note, for two nights straight now she is sleeping all night without interuption! Daddy and I are loving it!

1 comment:

Leah OOctober 15, 2009 at 7:10 PM
Hi. I found out about your blog from Delayed Darlings, and I just wanted to say that I am really enjoying reading about Olivia's experience and progress. And I love your positive attitude!

Thanks for posting,
Leah
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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

Wednesday, October 14, 2009

Day 13

1 comment:

Olivia's Story

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