High Hopes For Olivia

Wednesday, July 14, 2010

Wednesday, March 3, 2010

OliviaMarch3rd2010

Olivia is doing great! Here she proudly says "mama" and even tries to say "car"

Tuesday, March 2, 2010

Hi Everyone!

I've been wanting to post a video comparison of Olivia before and after HBOT. Unfortunately my dad's camera isn't working, so I can't take a current video. Hopefully it will be fixed soon.

Olivia is doing wonderfully! She is still saying "mama" on command and has even said it independantly a few times. She has been very cheerful and vocal, singing and playing with her sister. Its funny, now Eve can say "mama" too, but also says it with a scruffy voice like Olivia.

I'm glad we did HBOT, we are unsure if we will do it again, but are considering it. My husband is hoping to hear "daddy" soon.

Thursday, December 17, 2009

Day 39

The best way to describe Olivia today would be “cranky butt.” She was miserable gettting out of the car and never fully snapped out of it. Nothing was making her happy. Even so, she gave me no trouble getting into the chamber. She gave a little smile to the tech as we he slid us in. I wonder how the HBOT makes her feel. Honestly, I don't feel much different. However, if we were going in for me, we'd be diving to a stronger pressure.

Yesterday, I didn't blog, but there really wasn't much to say. Olivia was super super happy to be there. Completely opposite of today. Maybe she knows we are finishing tomorrow. I know she will miss them!

Monday, December 14, 2009

Day 37

Olivia did great today! She was happy to be there, happy to get into the chamber, happy in the chamber, and happy after the dive. What more can you ask for? I think alot of it has to do with the people there. She loves them, its a cheerful atmosphere, and always a positive experience. We will miss them.

Olivia is saying “mama” more and more. I got a school note saying that she has showed them how she says it. She is even starting to say it on her own, without a request or in imitation. She has a new sign, “I'm sorry.” She uses this sign upon request at the end of a “time out” session. She is doing better in “time out” as well. She used to get up after about 15 seconds of putting her into a seat. Now, she is able to wait a full minute until we go up to her, discuss why she was put into time out, she signs “I'm sorry,” and then hugs and kisses. (her favorite part) Its something!

We're off tomorrow and then we go Wed, Thurs, Fri to finish!

Friday, December 11, 2009

Day 36

Olivia had big smiles for everyone at the HBOT center today. When I came back from the bathroom, she was snuggling up with the receptionist. I offered to trade jobs with her, I'd work the desk if she'd go in the chamber with Olivia, but she didn't accept. Olivia wasn't too bad today. We had the head of the bed all the way flat, so that offers a little more room for when Olivia likes to lay cheek to cheek. For a few minutes Olivia laid on her back at the foot of the chamber and watched tv. It was a beautiful thing!

Olivia continues to say “mama” upon request. She also says “aga” for again, and today she was repeating “gaga” for grandpa. I hope this continues! I think Daddy is starting to get jealous and has been working with Olivia to say “dada” much more lately.

Only one week left!

Wednesday, December 9, 2009

Exiting dive 33

Happy coming out and running for a sticker with grandpa!

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.