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.

Playing with cousins is the BEST

The girls and I spent the last two weeks at my sister's house. Their house is BUSY! Four children two adults and one dog plus friends up and down the block make for a lot of excitement. Much more excitement than my children have ever seen in our house!

Julia was in heaven playing with her cousins. In fact, when we came home for the weekend in between weeks she was a bit distraught that she had "no cousins to play with!" She was able to stay up later at night, watch movies with the kids, eat a non-fruit snack before bed and play musical beds each night. We played a lot of games and she made a friend with a child across the street that is almost the same age as her. We even went and saw the movie The Princess and the Frog. What more could a 4 year old ask for?

As for Emma, she made a huge amount of progress with her gross motor skills. She is such a busy-body that she didn't want to miss out on any of the action! She kept her head held high, stood in her stander without her tray for a long period of time most days, played Bingo with us (ok, she kept tossing everything on the ground but that shows HUGE progress on her part!), and sat in an Indian-style position unsupported for about 5 minutes at a stretch. This is all after she spent the day having 2 HBOT treatments, a bit of exercise in between each treatment, and a 2 hour ride in the car.

Oh, and Emma also didn't have much sleep with all of this because because I forgot her pacifier and decided it was time to wean her off of it instead of buying a new one. She only took the binky when she went down to sleep anyway, but she just LOVED it! Loved as in she would giggle like crazy when she knew she would get the binky in her mouth. I just love that giggle - it's so darn cute! So, why am I so mean to take it from her? I need more sleep and I think her binky was a big reason she wakes up at night. When she would lose it from her mouth she would wake up and cry for us to come back in the room and put it in her mouth. Her arms are not that advanced to be able to find the binky, grab it and put it in her mouth so she needed us to help her out which meant a lot of interrupted sleep for us (well, really, it was mostly me as Chris can sleep through crying babies). I was hoping that without the binky to start with she won't wake up and cry for us to replace it once it fell out. She wasn't a happy camper -ok, that's a huge understatement!- but eventually adjusted to bedtime without the binky. I'm keeping my fingers crossed that this will mean more sleep for everyone in our house.

The kids are all really into music and liked to put on the iPod and dance around. Emma was pleased as could be that they included her in this by pushing her all around in either her chair or stander to the music. It was SOOOO nice to see Emma included as just one of the gang. And, she KNEW it, too! She was loving moving around with the kids without hanging next to Mom all the time. Of all the kids, though, Emma was really sweet on Christopher and she kept talking like crazy when he was around. I heard quite a few consonants coming out of her mouth along with the vowels and I would say there were even 3 syllable sounds. This was all music to my ears!

So, we took two weeks off of standard therapy (and preschool for Julia) and got 20 HBOT treatments under our belt. Emma has now completed 29 dives and has 11 to go that we will fit in over the next couple of weeks while she participates in her standard therapy sessions. We'll commute to the HBOT clinic from our house making for a bit longer days but we know that it will be over in a few weeks and are praying that the time and money spent on HBOT will allow Emma to make great gains in her speech and motor skills. Time will tell for sure but we have noticed some changes in Emma since we started the HBOT (will post more on this in the future) and that gives us hope.

I think it did us all good to take the time off. It was really nice for me to spend quality time with my sister and her family. We don't get to visit together nearly as often as we would like and the extended visit really felt that we could just relax and hang out. I love seeing how independent and outgoing Julia can act when she is with her cousins. She is an amazing little girl and I really hope the next house we buy has some children her age nearby. Seeing Emma fit in as one of the gang - and how strong she was getting by trying to keep up with all the kids - did wonders for my heart. There were so many times that I was touched with how the kids played with Emma that it helped heal my heart a little more.

So, we had two weeks away from home and off from therapy. Thanks so much to the Nitka's for hosting us! We had a blast and will definitely make time for more sleep overs. As for "no cousins to play with?" Well, we all missed Chris and Finnegan and even though it's nice to get away, it's always good to be home again.

HBOT day 1 and 2

We've been investigating hyperbaric oxygen treatment (HBOT) for the past few months and this week decided to give it a try with Emma. The place we are using is within driving distance, but it's a bit of a long drive at about 1 hr. 40min. each way. The drive is beautiful - through Lancaster County, PA complete with rolling hills, animals and farms, and the Amish community driving their buggies - but it is still a long round trip drive. Oh, and did I mention that we have about a foot of snow on the ground right now? Well, lucky for us the roads in PA are really well kept and pretty clear for driving. Unlike the road in front of my house, but that's another matter all together.

We were glad that Chris had off from work due to snow so he could tour the facility with me before we made our decision. The doctor of hyperbaric medicine was there along with the nurse to answer our many questions. Afterwards, they offered for Emma to start that day if we were interested. We felt as comfortable as we would probably get so we decided to take them up on the offer.

When we arrived there were three people receiving HBOT. One was a young Amish girl and Emma was going to use the chamber that she used. I was nervous about starting this treatment with Emma and had to think to myself how nervous the Amish family getting a treatment for their little girl must have been before their first session! That calmed me down a bit.

The chamber is pretty small and Chris went into it with Emma for the first session. I posted a photo so you can see just how cozy the chamber is with not much room to even move your arms around when laying on your side. Emma seemed to love looking around at everything going on in the room and wasn't the least bit phased by the cramped quarters. Chris chewed some gum to clear his ears and didn't complain too much about the small space so the first session was a rousing success.

Today we went for another session - just me and Emma. When they started to put me into the chamber I panicked and had them pull us back out. We moved to a different chamber where we were loaded feet first instead of head first. I was still nervous and panicked, but managed to hold it together for about 30 minutes and just kept wondering how on Earth I would be able to go in with Emma for another 38 sessions! At about 30 minutes - pretty much when everyone was convinced I had settled down and was over the hump of my nervousness - I asked them to stop and let us out. Emma was fine and happy as can be, but it was me that needed out. I felt like I let Emma down but she seemed happy as ever and not nearly as sad as me.

After a bit of discussion we decided to let Emma try the chamber solo. Chris and I had been giving her a bottle to help clear her ears during pressurization but she really didn't seem like she needed it. We all felt that Emma seemed quite capable of clearing her ears on her own and that meant that I was not necessarily needed to give Emma a bottle in the chamber. We propped up a couple of pillows so Emma could see all around and added a couple of blankets on either side of her to keep her in place a bit more. We also covered her with a blanket since she wouldn't have the extra body in there to keep her warm. Then she entered the chamber for the remaining 30 minutes of the treatment. She did GREAT! Smiling the whole time, looking all around, watching a bit of tv, laughing at a bit of peek-a-boo I played with her. We even put a mirror on top so she could look at herself and she kept moving both arms to touch herself in the mirror. I was nervous with her alone in the chamber and didn't leave her side, but she really seemed happy and was moving her arms all around in a manner that she wouldn't be able to do if someone else was in there with her. So, I think it worked out OK after all.

We have another session scheduled for tomorrow and then a few days break for Christmas. The plan for tomorrow is to see how Emma does on her own again since I just don't think that I can get over my claustrophobia and join her. I used to think that I could do just about anything for love of my little girl, but I guess I'm learning that sometimes I just have to be a bit more creative to get to the same end result.

I'm going to keep a log of any changes we see in Emma during her HBOT treatments so you might see an update from me on HBOT in about a month.

Decisions, Decisions - HBOT or no HBOT?

It is very complicated to raise a child with special needs. While I want it to just be me, Chris and the girls making decisions for our family, the truth is that we need to bring in others to help us navigate our way through the cCMV, cerebral palsy and deaf diagnosis.

There are the various specialists, therapists, and alternative medicine practitioners that we consult(ed) over the last 2 years. I believe that the team we have on Team Emma is top of the line and wrote a bit about it in a blog post a while back. But, while I believe we have the best team working with us, I know that many of them know about the diagnosis at arms length - they do not live and breath it 24/7 like we do.

Throw in the complication of Emma having multiple (dis)abilities and the occasional conflicting opinions of the specialists and we realized quickly that Chris and I need to consult with the experts on our team and parents who live with similar circumstances to us and then chart our own course.

The internet is full of information and, while information is power it can also be confusing. There are loads of people trying to get you to buy into their philosophy or therapy. Many with testimonials from people who say how using *product* has changed their life.

At this point I feel that we have a great CORE treatment plan to help Emma reach her potential with the therapy she receives, the nutrition plan we are following and the careful monitoring of her progress. I also believe that the ancillary plan we have for Emma that includes craniosacral therapy and therapeutic riding have been extremely beneficial to her progress.

We are currently deciding if we should add a course (40 treatments) of Hyperbaric Oxygen Therapy (HBOT) since there are quite a few studies that have seen very positive results with HBOT for cerebral palsy. I have also talked to a few parents who highly recommend HBOT and have seen measurable results in their children after the treatment. We have also talked to members of Team Emma and there are conflicting views, so that makes it harder for us to make a decision.

For HBOT the convention is that the results are more measurable the younger you start so we should start NOW. The reason for our hesitation on this is the expense of the treatment (it is not covered by our insurance), the time associated with the initial course and how it would effect Emma. Since each child is unique, they respond differently to HBOT. There are children who see amazing results, some who have marginal results and some that have no noticeable change.

We are in the process of deciding on HBOT, so if you are reading this blog and have any thoughts on this topic please leave us a comment!

Our Crazy Schedule

I was thinking today that our life is a bit hectic and characterized by a lot of running around. I keep thinking that it will calm down a lot once Emma starts pre-school, but I'm not sure it will. And, to be honest, I'm not really looking forward to Emma starting school - but that's still a year away and so I don't think about it too much.

Now, are you at the edge of your seat just wondering just how we usually spend our days? Well, you're in luck because I've put our typical weekly Fall schedule below. It does not include the multiple specialist, alternative therapies and doctor appointments because that would just make the week crazy (LOL!). This schedule is the best we've had so far, so I'm keeping my fingers crossed it doesn't change anytime soon.

Monday - Julia pre-school from 8:45am - 3pm, Emma 10am AV therapy, 11am PT, 4pm OT

Tuesday - Emma 8:30am speech, 10am Early childhood educator, Julia 6:30pm dance class

Wednesday - Julia pre-school from 8:45am - 3pm, Emma 9am AV, 10am PT, 4pm OT

Thursday - Emma 11:30am speech, 4pm OT

Friday - Emma 5pm therapeutic riding; day time is usually spend doing something FUN!

Saturday - Julia 8am or 9am soccer (will be replaced by swim lessons in the Winter)

1x/month - Teacher of the Deaf and Craniosacral therapy

Weekends - nothing but fun, fun, fun

The good thing is that nearly all of Emma's therapies are play-based which means she gets to have lots of fun while getting stronger. Julia gets to have fun at school for the days that Emma's therapies are outside the home and for the other days Emma's therapists are fantastic at including Julia in the sessions (or not, if Julia and I want to use that block of time for some Mommy/Julia quality time).

So now you have a basic idea of what we're up to - we're a busy crew, but are adding in more play dates and library story times to balance out all the adult interaction. No wonder I have a few photos of Emma just relaxing during the day to choose from for this post - complete with her ever-present smile! I wasn't as lucky for Julia who is always on the move so I picked my favorite soccer photo to post.

Why I Blog

I originally started this blog as a way to keep track of what is happening in our lives. I've always wanted to keep a journal and have started and stopped over the years but never really have the time to write consistently. I type much faster than I write and I thought of keeping an electronic journal but only gave that a half-hearted effort. The idea of an online blog appealed to me so that I could journal about the girls' milestones, easily include digital photos and video, and keep family and friends updated on Emma's progress.

I became familiar with blogger by visiting the blogs of (mostly) Moms of special needs children. I visited some blogs so frequently that I started to "follow" them so that I could be informed of new posts - you can see the blogs I follow in the panel to the right. In reading these blogs I met kindred spirits, found inspiration, and learned a lot about alternative medicine options. And, to be honest, in the beginning I found that reading the blogs was sort of a "Chicken Soup" for my soul.

I started leaving comments with my online community and people found their way over here to check out my blog. I'm now at the point where I want to help pay it forward - to provide information learned on our journey that others might find helpful, so I created posts on craniosacral therapy, therapeutic riding, and equipment. These posts were meant to keep family and friends updated and also to provide information to other parents in a similar situation. I will also contribute to Tara's Kidz blog as a way to share our journey with more parents and also spread the word on preventing CMV birth related defects to a larger audience.

As I expand the focus of this blog you might notice more posts meant to share with my online community included among all our family happenings. I think you'll find them a nice complement to my blog.

Nutrition

I think back to when Julia was little and how effortless she made it seem to progress through the typical baby stages - cooing, holding head up, laughing, sitting, eating, crawling backwards, cruising, crawling forwards, walking, eating table foods, drinking from a cup. I now know how complicated each of these actions are and think babies are brilliant since they usually acquire these skills in the span of a year or 18 months.

Children with delayed motor skills go through the learning process much slower and often with a team of people directing, prodding and moving their bodies for them all in the effort to train the brain so they can eventually move on their own. For us this means an endless group of people coming in and out of our house, a daily schedule that is set around therapy schedules, and endless worry about each milestone not achieved. It can get very tiring, but it also makes the celebration of each milestone achieved that much sweeter. It makes you want to dance around the room laughing and twirling the girls. It makes you want to bake a cake and........hmm, thinking of cake brings me back to the original topic of this entry - feeding!

The motherly instinct to feed your children is so basic and strong that it is pretty much universal. And when you have a child with motor delays feeding is often a daunting challenge. We are lucky that Emma does not have many challenges with sucking - she was able to nurse fine and transitioned to a bottle seamlessly. The fact that Emma loves to take a bottle has been a HUGE advantage in keeping her nourished. When Emma is in the never-ending teething process, unable to, or just plain doesn't want to eat it's nice to know that she will always suck down 6-8 ounces of fluid. It nice to know, but in my heart what I really want to do is feed my child. I want to not have to worry about weight checks and I want to eliminate the words "failure to thrive" from my child's medical files.

And so the focus of some of the therapy and specialist appointments took shifted to teaching Emma to eat. At this point I had already had enough people telling me what to do and how often to do it and I wasn't looking forward to the input on the feeding. But, I sucked it up hoping that Emma would benefit from the expert advice and that meal time would result in less frustration and fewer tears shed by me or Emma or both of us.

We added oral exercises with chewy toys to our daily list of activities with Emma. She still has oral aversion some days but other days she lets them in her mouth so that is progress. I shifted my focus from eating table foods to making meals that make appetizing purees. And, for good measure, I replaced many of our standard foods with organic foods. Emma now has days when it's a pleasure to feed her (i.e., opens her mouth for the food and finishes a meal in a 30 min. block of time) and days where she has her mouth clamped closed like a pit bull. It seems to me that just when I'm about to give up on Emma eating she comes through with a couple of good eating day. It's almost as if that she likes to take me to the brink of breaking only to pull me back to sanity with a smile, laugh and a ravenous appetite.

I would say that we are now in a feeding routine that works for us. I've accepted that Emma will willingly eat food about 3-4 days/ week and the other days I will have to hide it in her bottle. I've also accepted that she will be eating pureed and mashed foods for a while before she moves to more solid foods. She is adept at drinking out of a training cup and is even getting close to holding it herself. This would be a HUGE achievement in my book since it would give Emma a lot more control and provide us with a bit more time not spent on direct feeding (currently it takes about 3 hours/day). We'll find out in October if Emma is on the height/weight curve they want, but to my eyes and arms Emma definitely feels like she is growing at a healthy rate.

Another change we made recently is changing Emma's nutritionist to Kelly Dorfman mainly for her experience in using diet to address dyspraxia and language delays in children. Since Emma's oral motor skills are delayed and she has some traits that are similar to dyspraxia we felt Kelly was a good fit for Emma's team. Our initial consultation focus was around changing Emma's diet to address her acid reflux and constipation. We also talked about supplements available to promote brain development and better motor skill control for Emma. The outcome of our consultation is a change in Emma's liquid intake from a mostly milk/formula/Pediasure base to a mixture of almond or soy milk, unsweetened coconut milk and a special formula powder. We also are introducing DHA and a liquid vitamin specifically developed for brain injured children to help Emma achieve our goal of less reflux and constipation coupled with good brain development. We are phasing the changes into her diet and have a follow-up appointment with Kelly at the end of September to review Emma's progress.

Well, there you have it. We're doing a lot to make sure that Emma has the best foundation possible - therapeutically and nutritionally - to help her heal and we're learning a lot along the way. As always we are happy to make course corrections as necessary, but for now I think we are on the right path.

Craniosacral Therapy

Emma had her first appointment for Craniosacral therapy on Tuesday. This is usually considered an alternative therapy, but many people use it as a complement to traditional therapy techniques. The therapy is based on the work of William Sutherland, D.O. and Dr. John Upledger and is a hands-on approach to enhancing the craniosacral system which is comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord.

I had heard from many other parents that they are seeing benefits of using craniosacral therapy with their children with cerebral palsy, so after researching it and finding out that it cannot hurt Emma and might help we decided to set-up an appointment. I found a therapist in our area by visiting the Upledger Institute home page and selecting find a therapist. I called the office and spoke to the doctor at length about the therapy, her working with a child that has a cochlear implant (she does work with a couple children with CIs!) and she also gave me phone numbers for a couple of parents to contact about their experiences with craniosacral work on their children with cerebral palsy. Speaking to the parents was great - in addition to getting information on the therapy, I now have a couple more people to contact regarding school questions, doctor recommendations, etc.

Emma had her first appointment this past Tuesday. It was in the afternoon, smack dab in the middle of her typical nap time but she was really good for the appointment. She thinks Emma has a lot of potential and found some tight spots in her soft tissue that she worked on relieving the tension. If you were in the appointment with us, you probably would wonder why I'm spending money on this therapy. It appeared to me that the doctor was pretty much just holding Emma, but I know that she was doing the therapy. Thank goodness Chris wasn't with me! He isn't completely on board with alternative therapies to begin with and if he was at the visit and saw what we were paying for he sure wouldn't be on board. However, how Emma has behaved since this visit is very interesting.

We came home that day just in time for Emma's 2pm speech therapy appointment. She should have been completely exhausted as she didn't get her standard nap, but she wasn't. Her body was really relaxed and she was really focused on the speech session. It is one of the best sessions ever. Her therapist was so excited that she stayed longer not wanting to leave while Emma was so engaged! On Wednesday she had her AV session. She has not been very focused or interested in this therapy for a few weeks and her therapist was beginning to wonder if we should have her CI checked out. So, when she was completely attentive and actively participating in her therapy session on Wednesday we were both thrilled.

As for communication, Emma has been making a lot of vowel sounds but her consonant production is spotty. She is making good progress with her CI, but not setting any records. I think she would be making much better progress if it wasn't such an effort - sometimes it seems as if takes a whole body effort to make sound - for her to vocalize. She is such a social girl that she really wants to communicate and usually defaults to smiles and eye gaze. Since her craniosacral therapy session, she has been talking a lot more, making vowel/consonant sounds repeatedly, blowing a bit of raspberries and generally making more sounds without expending as much effort.

Chris and I had a conversation about Emma this weekend. Since he is VERY skeptical of alternative therapies I thought his observations this week would be a better measure than mine. I was happy to find that Chris noticed the same changes in Emma that I did so it wasn't just wishful thinking on my part. Now, is this due to craniosacral therapy or not? I have no idea, but I sure love the recent progress. We'll keep up with the craniosacral therapy and already have her next two appointments scheduled. I'll continue to update everyone on her progress.

Addressing the To Do list

Who knew that having one person not working outside the home would make life so much easier? I mean, I knew it would be a bit easier when I stopped working since we wouldn't have to juggle schedules as much but I had no idea that it would be a LOT easier.

Why is it so much easier? I have time available to attend to the important items that might not get addressed in our desired timeframe if we were both working, which helps keep my stress level down, and we even have time for more plain, old-fashioned, FUN.

Here is a snapshot of what I've been up:

• This week Emma's CI acted a little quirky and required 2 unexpected trips to see her audiologist as well as multiple phone conversations. This could have required a real juggling act if both of us were still working, but since I was home it didn't.
• We're in the process of doing some estate planning and will generation that is a bit trickier to execute when you have a special needs child. I had the time to research what needs to be done, check with a few parents in our similar situation to find out who the experts are, and even schedule our initial consultation.
• I can PLAY with the girls at night. I don't have to work after putting in a lot of hours working as "mom/therapist" during the day. It is so nice to relax and play with the girls and have more family time together.
• Enrolled Julia in swim classes for this session and attended the first lesson. She loves swim lessons and we were lucky to find the perfect date/time for our schedule!
• Researched and followed-up on alternative approaches I think Emma will benefit from. I've been trying to get to this for a couple of months now and, with the extra time available now, I've completed it in a week. The results? I have a phone apt. this week with a top researcher from the University of Delaware that wants to help facilitate a comprehensive evaluation on power mobility for Emma (this man is doing amazing things with infants/toddlers and robotics) and Emma has a craniosacral therapy appointment scheduled for next week.
• Put in some time researching the internet business I'm trying to start, registered the domain name and did some more research for the business plan. I have a LOT more work to do here and need to put more time into this as it is a high priority for me, but I know I'll have more time to devote to this next month when our babysitters are back from summer break.
• Reconnected with my contacts in Linked In (a professional networking site) and partially updated my profile. I still have to complete my updated resume and a few other items so that when I'm ready to jump back into the job market I have everything ready to go
• Found time to measure, assess and order an appropriate ramp for our minivan to load Emma's stroller. This will save a lot of wear and tear on my back from lifting her stroller in/out of the car. Her stroller is AMAZING, pushes like a dream and we love it (even if there are a couple of minor details we would change), but it is quite heavy to lift and I'm looking forward to getting the ramp.
• Emma's been using a communication board with her speech therapist that is the best of all the boards we've tried. I was able to contact the Delaware Assistive Technology Initiative (DATI) and found that they have the same communication board that we can borrow - they have reserved it aside for us and we are picking it up on Monday. We've borrowed items from DATI in the past and it is a great FREE resource for DE residents.

You'll notice that I didn't say I'm a stay at home mom. That's because our life does not lend itself to stay at home - I'm much more a mom on the go. I'm busier all day long *staying at home* than I was at work. I often don't get a chance to eat, drink or go to the bathroom when I want like I could at work, but I sure love the smiles, hugs and kisses that come with the territory.

Horse Therapy

We've been looking at therapeutic riding and hippotherapy programs (i.e., horse therapy) for Emma for the past couple of months as a fun way for Emma to work on getting better neck and trunk control.  We discussed starting this therapy with Emma's doctors and they all agreed that Emma could benefit tremendously from a program and so we set out to find a program that fits our family style.  We were lucky to have several programs in our area to choose from and found one that fits us perfectly! 

The initial goals we set with our therapeutic riding team are:

1.)  Improve Emma's neck control - have Emma hold her head up mid-line for extended periods of time

2.)  Improve Emma's trunk control - have Emma ride the horse in various positions

3.)  Improve Emma's vocalization - have Emma *talk* to the horse to get him to move

We expect that these goals will take a while to achieve and that Emma will be riding horses long into the future with the first therapy session starting today.  I was so excited for Emma to start a "fun" therapy and thought Emma would be equally as excited to ride a horse.  After all, Emma loves Finnegan, our 90+ lb. labrador retriever that she often straddles like a horse so I thought she would be thrilled to take a spin on Dunkin the pony.  Boy was I wrong!  

Although Emma was all smiles while in the stroller looking up at Dunkin, once we put Emma on him she started to scream and throw her back into an arch to try and get out of the activity.  I wasn't sure if she was screaming because she was scared of the horse or that her 4 person entourage were strangers to her with Mommy looking from the sidelines, but I quickly gathered that it was pure temper.  There wasn't a tear in her eyes for the entire session even though she screamed for 99.9% of it!  The director of the program told me that many children cry in the beginning and that after several weeks they start to look forward to the riding lessons.  I'm pretty sure Emma will come around to finding it fun and I hope it's soon since she will be riding every Friday evening for the foreseeable future.  I just won't tell her that Julia offered to ride Dunkin for Emma since she never cries when on a pony.......I have a feeling she'll be asking for riding lessons alongside Emma really soon.

Here is a short video of Emma riding inside the stables (before her screaming really started in full swing) before we went outside for some fresh air.  Even being outside didn't slow Emma's screaming down, which just amazed me since she is usually all smiles when outdoors.  It did result in a very quiet ride home since she promptly fell asleep from all the exertion screaming.  Let's hope that helps her sleep through until the morning! 

New Adventures

I'm taking the leap and created a blog on Google.  I have received so much valuable advice from other parent's blogs and am just starting to become comfortable enough with our crazy, hectic lives to share it with others.  So, here goes......

Welcome to our blog!  Spring is here, but the weather sure still feels like winter.  We're anxious to start spending more time outside with the girls.  Chris did manage to get a single coat of stain onto the outside deck and hopes to get the second coat on within the next week as long as the rain stays away.  Our hope is to have everything ready for us to enjoy the good weather when it arrives!  

Julia received her costumes for her dance recital and loved trying them on and is looking forward to the recital in June.  Emma is making a lot of progress with her vocalizations and desire to interact with the world with her hands and we see that her hands are open much more, she reaches for objects more readily and is making movements that suggest she is ready to roll from her back to her belly.  She is making more consonant sounds, such as -m-, -g-, and -b- and I hope that it turns into a consonant vowel combination (ma, ga, da, ba) soon.  

We are planning on starting Emma in therapeutic riding/hippotherapy and are looking at a few different locations in the next couple of weeks.  I am really excited about this and think Emma will just love this, and I'm sure we'll have to find out if there is any option to include Julia in this as she keeps talking about the pony ride she had in the fall and when can she do it again. In addition to hippotherapy, I am starting to think about craniosacral therapy and nutrition options for Emma.  I have talked to a few parents who have seen great results with their children after starting these alternative therapies and I am doing research to consider if we should implement them  with Emma.  We are being careful that we do not overextend Emma as her schedule is already so busy and we want to make sure we keep enough time for fun.