High Hopes For Olivia

Monday, September 28, 2009

First HBOT Session

We made it through our first HBOT session! I was a little nervous/excited...but luckily it all went well. On our drive there, I let Olivia watch a “My Baby Can Read” video. Not because I necessarily desire her to read right now, but its still good for her and she really likes it! I taped her watching it and we can compare her response to it weekly.

Olivia was happy to be at the office, its very pretty there. We checked in and went over to the chamber room. There are three chambers side by side and a little boy was getting into one. Olivia was fine sitting on the stretcher, but when we needed her to lay down so that they could slide her in, she cried. The tech suggested I go in with her, so I took off my jacket and shoes and layed on stretcher. Olivia layed on me and she pushed us in. With Oliiva on top of me, there wasn't any extra room above her. It was tight! Eventually Olivia slid down my body and hung out by my legs. The chamber is perfectly clear and we could easily see everything around us and could hear the hiss of the oxygen being pumped in and the music of “Wiggly Wiggly Christmas” (Olivia's favorite video)

It all happened so fast, I did'n't have time to think about it...and I'm guessing thats a good thing. My ears started popping..Olivia doesn't know to swallow and I forgot in the rush to bring in her drink. She was rubbing her ears, but didn't seem to be in any discomfort. We sang along with the video most of the time and played with Grandpa through the glass. My parents are really helping us through this adventure. Grandma is staying home with Eve, and is preparing us dinner. Grandpa is driving us, staying with us, and video taping. We are very thankful for their help! Thank you!

The time went fairly quickly..Olivia and I snuggled, sang, looked around..etc. Decompressing wasn't too bad, Olivia was whining, but I also think she was tired. When we slid out, Olivia was very happy, babbling a lot and full of energy! We ran around the lobby for awhile since we have a long ride back. She was very thirsty and hungry on the ride home. I'm glad my mom packed snacks, cause she ate a whole PB&J sandwich, some pretzel rods and yogurt raisens.

We took alot of videos and a couple pics, so I'll try to post them as soon as I can.

2 comments:

Owen's MomSeptember 29, 2009 at 6:05 PM
I can't wait to see photos and videos! I'm glad she's doing so well. Hope you are hanging in there!
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OliviasMommeeSeptember 29, 2009 at 7:51 PM
I'm working on it right now!
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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, September 28, 2009

2 comments:

Olivia's Story

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