Friday, February 26, 2010

HBOT Update - 40 dives completed!

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:
  • We started to see changes with Emma after about 10 dives. She was more vocal and played with her voice (loudness, pitch) for a noticeable uptick in the quantity of vocalizations. The girls and I were in the car after about the 8th or 9th dive and Julia was talking to me and Emma was yelling over her and Julia said "Mommy, Emma won't let me talk!" and it was true. I don't think anyone has ever thought to shush Emma at all - just the opposite with us trying to get her to make vocalizations - and it was amazing to me that I was thinking the same thing as Julia! Emma is still pretty quiet compared to typical hearing children but we are so happy to hear Emma doing some jibberish talk now.
  • On New Year's Eve, Emma spent a lot of time trying to crawl. She has been trying to crawl for a while, but this time it was different. I took a lot of video of her efforts and the difference is that she had a lot more gusto - like she's been desperate to move and with the HBOT treatments it seems like she is much more confident in trying to move more.
  • After her 32nd HBOT treatment, Emma took stepping motions and I posted about that in the Jan. 26th blog entry. Up until then Emma would take a step or two here or there, never multiple steps in a row. Watching Emma demonstrate reciprocal movement with her feet is a huge deal for us and we are excited to get started with a gait trainer and continue to encourage her efforts on stepping which could lead to her walking.
  • Emma is also demanding more table food, non-pureed! This makes me quite nervous since she can't really handle it, but we are working towards getting her onto more "toddler table" food. Emma had shown an interest in table food before starting the HBOT, but it seems like she is stepping up her desire for the food on my plate! I'm not sure if this is an effect from HBOT or if it would have happened anyway, but we don't mind either way. I'm just thrilled that feedings are no longer filled with anxiety for me.
  • Emma is pushing up on her arms now and trying to get into an all fours crawling position. She now can push up with her arms extended while on her stomach for a few seconds at a time instead of only able to push up with her forearms propping her up. I've posted a video below so you can see just how hard Emma is working to get moving!
  • This week Emma sat in a crisscross applesauce position for more about 10 minutes without my assistance. You can see pictures of this here. Last year Emma could only hold the sitting position for a few seconds to a minute or two at the most and I would never leave her side while she was sitting. Now, Emma can't get into or out of the sitting position (falling doesn't count!) and if she moves around in it too much she'll topple over, but she is making a lot of progress towards independent sitting.

As you can tell, so many things seem to be coming together for Emma and, while they may have come together eventually, I think the round of HBOT she completed definitely had a hand in her recent progress. It's too early to determine the final outcome from this round of treatments, but the changes we have seen are a good sign and we hope to continue to see positive changes.

Thursday, February 25, 2010

A Good Day

Today we had a great day! Julia and I were planning a Mommy/Julia day and we added Chris to the mix when his school was closed for snow. There really wasn't any snow where we live so we headed out for some one-on-one time with Julia while Emma stayed home to play with our babysitter and have a speech therapy session.

Miss Kate, Emma's fabulous speech therapist, left us a note to tell us about Emma's session. I wanted to post it here so everyone can know of the progress she is making!

"Wow! Great session today. Emma laughed appropriately at silly things I did - I got food on my elbow and showed her. There was something else that happened that Emma laughed out loud and so appropriately! Emma chose toys from field of three 2x's. She followed directions - knock it down and high five with motor support to accomplish. I heard the following sounds b d g u e uh. I heard C-V C-V C-V (c= consonant, v=vowel) syllable strings: agubija, agudu. She ate extremely well today. I gave her chin support to help Emma clear spoon and prevent spillage. She did a great job today!"

This report just has me beaming! We are working so hard to have Emma hear and vocalize with her cochlear implants and it is so hard for Emma because her motor issues carry over to her mouth. When Emma first started vocalizing we only heard vowels. Then it was vowels that were strung out like: aaaaaaaaaaaah. Then we started hearing some consonants and now she is stringing together consonants and vowels. Emma still is quiet overall but getting more and more vocal as the days go on. Progress is made over the long haul and we are starting to see the fruits of Emma's (and our) labor.

As for Julia's day out, we went to a local amusement center and then out to lunch at the place of her choice - IHOP. Julia ate up all the attention and insisted in holding both our hands as we walked to and from the car. Chris was so glad that he was getting so much attention from Julia since she sometimes shows a preference for "Mommy do it!" We all had such a fun time and are looking forward to our next one-on-one outing with Julia - hopefully when the weather is nicer and we can spend our time on an outside adventure.

In case you were wondering, we also do one-on-one time with Emma since we don't want all of our outings with Emma to be to therapy and doctor appointments! Next up for Emma is story time at the local library that she and I will attend starting next week while Julia is at school and we are going to check out a KinderMusic class at the Y to see if we want to sign up for the Spring session.

Here's to enjoying the good days!

Monday, February 22, 2010

Look who is sitting!

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!

I started getting worried that Emma would fall since I had never seen her sit independently for so long so I put the boppy pillow around her to break any potential fall. She continued watching the TV - she loves Signing Times! - in her sitting position for a while longer and I took more photos. Seeing Emma sit like this seemed so normal. She looks so relaxed sitting on the floor. Emma continues to amaze me every day!

Sunday, February 21, 2010

Video of Emma Stepping!

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 :-)

Without further ado, I give you Emma stepping!

Tuesday, February 16, 2010

Night Owl

Emma is revolting at bedtime lately. And I mean REALLY revolting. She throws a tantrum of terrible two proportions! This is pretty much how the terrible twos is showing up in Emma as she is just a happy child outside of bedtime.

At nap time she laughs happily when I put her down for a nap - so what is the big deal with bed time? I'm not sure, but we have given in a bit (ok, a lot) to her and taken her out of the crib so Julia could fall asleep without Emma's crying. Actually, it's more of a blood curling scream than crying. It's gotten to the point where Julia asks every night when we will be moving so she can have her own room and can fall asleep without listening to Emma scream and cry!

When we break down and take Emma out into the living room she just SHINES. I think the astronauts could see her happy aura from space. It's so wonderful to see her with a megawatt smile scooting around the floor on her back and pretty much laughing at just about anything we do. She really could make your head swell and have you thinking that you are just as great as she thinks you are. She is our biggest fan! And she is just so darn loveable when she is like this!

And then Chris and I realize that we are tired because it's 10:30pm and we've had a full day and would really like Emma to settle into sleep so we could have a few minutes to do our own thing before we collapse into bed. But, alas, it's not to be. It appears we have a night owl on our hands. And since we already know that she is a party animal it seems like we could be in for trouble when she gets older.

Now you know the real reason I have such a fondness for my morning cup of coffee.

Monday, February 15, 2010

About CMV

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.

Why do I have such an issue with the silence around CMV? Here are the facts on 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
Now, aren't those statistics STAGGERING???

So, just what is CMV? CMV is a member of the herpesvirus family that includes chicken pox and and infectious mononucleosis. Once CMV is in your body it stays there for life - similar to chicken pox. CMV is a virus that infects people of all ages and up to 80% of adults in the USA are infected with CMV prior to age 40. Most CMV infections are "silent," meaning they cause no signs or symptoms in an infected person. Transmission of CMV occurs from person to person, through close contact with body fluids (urine, saliva, breast milk, blood, tears, semen, and vaginal fluids), but the chance of getting CMV infection from casual contact is very small.

While researching CMV and learning the facts I couldn't believe our doctors didn't even mention CMV in passing. When I asked my OB/GYN and our pediatrician about it they said that they don't mention it since most people have already been exposed and if you hadn't been exposed there is nothing you can do about CMV since there isn't a vaccine. Other parents have similar stories from doctors and I think it is quite misleading. While it's important to know that no action will totally eliminate the risk of getting CMV, there are simple measures you can take while you are pregnant to reduce the possibility of transmitting CMV to your unborn baby.
  • 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.
Please spread the word on CMV to everyone you know who is pregnant or considering getting pregnant so we can prevent our children from the devastating effects of a congenital CMV infection.

To learn more about CMV, please visit the following websites:

Saturday, February 13, 2010

Snowpalooza 2010

Snow, snow, snow! That's all anyone is talking about around here. The mild winters of the last few years are long forgotten as we are all still digging out from all the snow we've had in the last week. There was a storm on Friday that left us with about 30" of snow and then another storm on Tuesday that dropped another 13" in our area. And, as if that wasn't enough, they are calling for more snow on Monday night.

Here is what our winter wonderland looks like now:

We're finally out of the state of emergency and able to venture out onto the roads once again. While out and about you can just *tell* that many people were ready to get out of the house and, perhaps, they had enough of all the family together time. As for us, we enjoyed hanging out together. We made some Valentine's candy and gifts, put some finishing touches on projects that we've been meaning to get to for a while now, and played a lot of games.

The thing we did NOT do was make a snowman. And the snow from Tuesday was perfect snow - nice and wet - to make a snowman! The girls just aren't into staying out in the cold for too long. Julia came out to help me shovel and lasted about 60 seconds before she said it was time to go in and get some hot chocolate. Seriously, a minute? It takes about 15 minutes to get all bundled up in the snowsuit, coat, boots, scarf, hat. Anyway, she enjoyed the view from the window while drinking her hot chocolate.

We did remember to buy some sleds before the weekend storm and were able to go to the local sledding hill for some fun............along with about a thousand other people! Emma was super happy to be out with everyone and we laid her down in one sled and pulled her up the hill making it easy on us to transport her around. Julia was cold and it was hard for her to walk in the deep snow so she was a little less happy when she wasn't going down the hill in the sled, but had a great time while sledding down the hill. I think we'll try sledding again sometime before all the snow melts.

Monday, February 8, 2010

Partners in Policymaking

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.

According to the literature, Partners in Policymaking (PIP) is an innovative leadership training program that teaches people to be community leaders. It is designed for parents raising young or school-aged children with a developmental disability. PIP provides up-to-date information, education and skill building activities about the legislative process ad local, state and national issues that affect individuals with disabilities. Graduates gain the abilities to teach policy makers a new way of thinking about people with disabilities.

Ahhhh.......now this is a program I can get behind 100%. And since we are rapidly approaching aging out of the state's Birth to age 3 program, it is timely for us to find out about this program. Chris and I applied and are so happy we were accepted!

The program is great in that it is free - which meets our budget requirements! It includes lodging and meals, reimbursement for travel mileage to and from sessions, and reimbursement for respite care (this has an * in that it is determined on an individual basis). It is held over eight, two-day sessions from February through September with each session beginning on Friday at noon and ending on Saturday afternoon. There are also assignments to complete between sessions.

PIP was developed by the Minnesota Governor's Planning Council on Developmental Disabilities and has been offered in 40 states training over 5,000 people nationwide. PIP trains and educates Partners in:
  • 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!
We're excited to participate in this program and report out on all the great stuff we plan to learn :-) The first session is in a couple of weeks and...................YES, I am shamelessly looking forward to an uninterrupted (I hope!) night of sleep in the hotel.

Saturday, February 6, 2010

Dear Mr. President

I've been thinking about health care a lot lately and decided to write a letter to my representatives and the President. I plan to send the letters this week. Here is what I wrote - what do you think? Did I miss anything? Let me know.

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.



Friday, February 5, 2010

Sick Day

Julia had her 4 year old check-up yesterday and received a couple of immunizations. The tetanus shot left her with a sore, red arm and a bit of a fever. Emma was out of sorts and had a fever, too, which I think is from her molars that are taking their sweet old time in breaking through! So, we spent the day at home with most of the morning just lounging around watching TV, reading books, and a bit of swinging in the Wingbo.

I couldn't resist taking a few photos of the girls. They were so cute sitting together and hanging out. Emma even ignored her book to watch the TV since Signing Times The Zoo Train was playing. Both girls felt better by late afternoon and the house came to life again.

Let's hope we all get a good night's sleep so we wake up feeling refreshed and ready to play in the snow! The forecast is calling for up to 18" and there is already about 5" on the ground and the snow is coming down steadily. I'm happy to say that we actually have two sleds now and are looking forward to breaking them in tomorrow!

Artist Emma

Emma loves it when people write or draw. She stops what she is doing and stares shamelessly at the person with the pen, pencil, crayon, etc. and wants to join in the fun. We've always encouraged her scribble skills and she is just starting to really take off with the concept. Where before she didn't really look at her hand or paper while drawing and required a lot of hand-over-hand assistance, she is now able to draw dark and light lines, horizontal and vertical lines, and is now making circles.

Emma received a doodle board from Santa this year and we were using it during an OT session this week. We put Emma's hand in a specific grasp for her to draw and once that was done she took off drawing. She was concentrating so hard and was looking at her board while making the drawing.

I took a bunch of photos of her during this session - partly so we could remember the "just right" grip Emma likes, but mostly so I could show off her hard work!