|I wanted to capture some of the changes we've seen in Emma since we started her 40 rounds of hyperbaric oxygen therapy (HBOT). Emma's first dive took place on Dec. 21st and she finished her 40th dive on Feb. 12th. Her initial dives started at 1.3 ATM and we ramped her up to 1.5 ATM of pressure over time. Nearly all of her dives were done alone with me or Chris providing ample entertainment from outside the chamber.|
I kept a journal of changes we saw during the course of treatment and we are also hoping to see continued changes in Emma. I wanted to keep the journal since some children see amazing changes, some see moderate changes and others see no change at all. Going into HBOT we knew there was not a good test to predict what category Emma would fall into but we decided we had to give HBOT a chance and hoped that Emma would fall into the amazing change category.
It's our understanding that it could take up to 3 months for us to see results from the course of treatment. There are various theories about why HBOT works well for some brain injuries and one focuses on HBOT resulting in stem cell generation and how those cells take time to migrate to the effected area of the brain which is why it can take 3 months. In our conversations with the doctor and nurse at the center we were told that, in their experience, the children who show some changes before the 40 dives are completed generally have the most positive outcomes a few months out.
So, what did we see happen with Emma? The main change we have seen is that Emma is so much stronger, especially in her trunk and this is giving her much more confidence in her body. My motto for Emma lately is that "she is on fire!" I hope this continues as my hopes are up and sometimes I get high hopes and nothing comes of it. For now, I'm living in the moment and enjoying watching Emma blossom.
Here are the changes we've seen in Emma since starting HBOT:
Friday, February 26, 2010
Thursday, February 25, 2010
Monday, February 22, 2010
|I've had some questions about the HBOT effects on Emma and I'm going to do a post on that soon, but I did want to mention that the biggest effect we saw from HBOT was that Emma seems so much stronger. She is able to hold her body and move it in space better and I think this is noticeable by everyone across the board.|
Yesterday I posted the video of Emma stepping and then today we were playing together and I captured some photos of her in a sitting position. Although I placed Emma in the sitting position, she did the rest of the work to maintain this position for an extended period of time.
I put Emma in the crisscross applesauce position and told her to stay there and I walked a few feet away to get my camera and take her photo. I can't believe I actually walked away from her while she was sitting. The fact that I walked away meant I was confident that she wouldn't fall over and she didn't! She sat in this position moving her arms a bit without falling over for at least five minutes. This accomplishment just blows me away!
Sunday, February 21, 2010
I did a post a little while ago about Emma stepping/walking across the room with assistance and mentioned I would try and get a video up to show off her hard work. Well, I finally caught it on video! She waited a long time for her repeat performance - she loves to make me sweat these things out! - and today I was holding her in standing and she started taking steps so I decided to let her some space and support her in stepping. We were at my in-laws house and everyone saw her walk across the room and we were all cheering and Emma was SOOOO proud of herself. You could see it all over her face. Well, I didn't have my video camera with me then but when we were home she decided to step a few more times and I did get it on video. Which is a good thing as she might wait another month to repeat this :-)
Tuesday, February 16, 2010
Monday, February 15, 2010
My doctors estimate that I caught cytomegalovirus (CMV) sometime during the first trimester of my pregnancy with Emma and that is the cause of her hearing loss and cerebral palsy. I first heard of CMV when Emma was 3 months old (for blog post on that, click here), not before or during my pregnancy - and this is something that I take issue with since our doctors warn us to stay away from changing cat litter (toxoplasmosis) and lunchmeat (listeria) while pregnant but do not even bother to test our blood or tell us about the dangers of CMV.
- CMV is the virus most frequently transmitted to a pregnant woman's unborn child
- Approximately 1 in 150 children is born with a cCMV infection, approximately 1 in 750 children is born with or develops permanent disabilities due to CMV
- Each year in the US ~30,000 children are born with congenital CMV causing an estimated 400 deaths and leaving approximately 8,000 children with permanent disabilities
- More children are adversely affected by cCMV than by Down Syndrome, Fetal Alcohol Syndrome and Spina Bifida
- Know your CMV status. Ask your doctor to perform a simple blood tests to determine your CMV status so you know if you and your baby are at risk.
- Do not kiss young children under 5 or 6 years of age on the mouth or cheek. Instead, kiss them on the forehead and give them a big long hug.
- Do not share food, drinks, or items such as utensils or toothbrushes.
- Wash your hands with soap and water after diaper changes or after contact with a child's saliva or other bodily fluids.
- Daycare workers, teachers, etc. should wear gloves when changing the diapers of young children.
Saturday, February 13, 2010
Monday, February 8, 2010
Our state is sponsoring a program titled: Partners in Policymaking - a Leadership training project of the Developmental Disabilities Council. Sound interesting? Well, don't let the title put you off as I've heard from others that attended the sessions that it is life changing. Since programs sponsored by the state rarely get that kind of review we decided to check into it further.
- History of the Disability Movements
- Inclusive Education
- Community Supports and Supported Employment
- Vision for the Future and Planning Process
- Assistive Technology
- Local, State and Federal Policy and Legislative Issues
- How to meet Public Officials and give Legislative Testimony
- Community Organizing
- Working with the Media
- Holding effective meetings
- And more!
Labels: partners in policymaking
Saturday, February 6, 2010
Dear President Obama:
I am asking you to keep fighting for true health care reform because it matters more to people that they know. Like most Americans, I didn't realize that our existing health care system was letting down so many people. I did all the “right” things – went to college, worked my way up the ranks in a big company, completed my MBA, saved, bought a house, fell in love and married, and had children. We subscribed to the company health plan and were relatively happy with the coverage.
Then our world was turned upside down when our youngest child was diagnosed with profound hearing loss and cerebral palsy. I learned first-hand how great health insurance is if you are healthy, employed at a large corporation with reasonable health insurance rates and good coverage and how variable and challenging it is for people working at small businesses with hefty insurance rates and minimal coverage.
Recently, I lost my job and we had to change insurance. We worried about pre-existing conditions. We could not use the Cobra subsidy since my husband is able to obtain health insurance at the small business where he works even though the cost for his insurance is double what it would have been with the Cobra subsidy. We now pay 3x more for health coverage (vs. the large company) and have very little covered. The new policy has many exclusions, including cochlear implants and therapy for chronic conditions. As our family faces a lifetime of health costs we are learning more about the health care system than we ever imagined.
Although they might not know it, many Americans are one diagnosis/accident away from realizing how important it is for them, personally, to have the health care system changed. Specifically, we need to:
Remove the pre-existing condition clause
Eliminate lifetime maximums
Strengthen the Medicaid programs to provide accessible, high-quality health care services to our children with disabilities
Incorporate long term services and supports by including the CLASS Act and the Community Choice Act
Thank you for your continued fight to pass a true health care reform.
Labels: health care
Friday, February 5, 2010