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Monday, August 24, 2009

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.

Thursday, August 20, 2009

Emma on the MOVE

Emma has been trying so hard lately to crawl. She has the desire to move, but her arms don't cooperate with her too much. Well, yesterday Emma was on her back on the rug and I turned around for a moment and when I looked at her again she was on her belly! This is only the third time ever she has turned from her back to her belly, so this is still a HUGE deal for us! Then, she started to shimmy her way up the floor. I ran and grabbed the camera after she had gone about a foot. This all happened at the same time that Emma's occupational therapist had just arrived, so she was able to join in the fun of encouraging/helping/watching Emma crawl!


Here is a short video of her making her way - slowly, and with a bit of help - along the floor. She is so motivated and wanted to keep crawling so we did a bit more crawling work with her and Emma even moved her left arm up on her own! I have that on video, too, but not on the one posted below.

Congrats, Emma! I have a strong feeling that you will be much more advanced on this in a month, so we'll have to keep everyone posted. I CAN'T WAIT to have to safety proof this house for you, my darling.


video

Tuesday, August 18, 2009

Blue Rocks Night

The Variety Club is an amazing charity for children with challenges. They provide fun family events throughout the year at little to no cost for the families and also have grants available to help families obtain some special equipment for children that is not covered by insurance and costs a small fortune to buy (for example, an adapted tricycle is >$1500 each!).

On Friday night we joined the Variety group for a night out at the Blue Rocks game. It was a beautiful, warm night and the girls and I met Chris at the game directly after Emma's pony riding session.

The Variety Club had a picnic dinner all set up, a bucket of goodies for the girls, and even tattoos for the kids. Julia picked a happy face tattoo and Emma chose a rainbow heart.

Once settled into a seat, Julia immediately was on the lookout for Rocky Bluewinkle (aka: THE MOOSE) and decided that she wanted to go home immediately. We were able to convince her to stay by promising THE MOOSE wouldn't come anywhere near her. However, Emma has an amazing power over people and just draws them to her - and Rocky was no exception! So, when Rockly showed up, Emma was happy to flirt with him a bit while Chris took Julia to another section.

I was even surprised that I knew a couple of people at the event. I guess I can finally say that I am starting to develop a small network of families that are walking similar paths.

For me, however, the highlight of my night was when Emma kissed me! My first, unprompted kiss from my Emma Bean!!!!!!! And, Chris captured it on film. My heart melts....

Wednesday, August 12, 2009

Wordless Wednesday

From November 2008:


Tuesday, August 11, 2009

Grumpy Day

Yesterday I was a bit grumpy. No real reason except that I'm tired. The good news is that Emma's teeth are starting to poke through, so sleep is starting to return to normal. Nothing is better than an uninterrupted night of sleep to help you start the day out right.


So, what makes me grumpy besides lack of sleep? Here are a few things that get under my skin:
  • Martha Stewart Living magazine. In a weak moment I subscribed to this magazine for a year. I've decided that I HATE this magazine and will definitely not renew the subscription. The people in that magazine have way too much time on their hands and I don't need it rubbed in how unorganized and crazy my life really is!
  • Comments on how lucky I am that Chris is so good with Emma. We really are lucky to have each other - I know that. I just wonder how often Chris gets told how lucky he is to have me. I think it's just awful that society considers the woman lucky when the man sticks around in tough situations instead of challenging the men who walk away from them.
  • People who look at me with pity when I'm out and about with the girls. Don't look at us with pity. My girls are amazing. I love having them in my life. If you see me struggling with a door - please open it for me. Be useful but please don't pity us.
My natural personality is to be pretty happy so it takes a bit of effort for me to get into a bad mood. It's funny that I was able to stay so grumpy for the better part of the day. By the evening we went to the Y to swim and, really, who can stay in a bad mood while in the pool?

And now I leave you with some photos that should make you smile if you happen to be a bit grumpy. Enjoy!


Sunday, August 9, 2009

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.

Tuesday, August 4, 2009

Comfort in a Prayer

I have an on-again, off-again relationship with my prayer books. There are certain prayers I invoke all the time, but others I dig out based on where I'm at in life. Recently, I dug out my St. Elizabeth Ann Seton prayer book and, instead of mindlessly turning to the page I always read, I flipped through the book and decided to read a couple of new prayers.


I found the Serenity Prayer and read it several times. I had always known the first verse in the prayer, but didn't know that there were two more verses to it - what a well kept secret! In case you don't know the full prayer, I've typed it out below.

Serenity Prayer
God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.

Help me to live one day at a time, enjoying one moment at a time. Help me to accept hardships as the pathway to peace, taking as Your Son did this world as it is, not as I would have it.

Let me trust that You will make all things right if I surrender to Your will. May I be reasonably happy in this life and supremely happy with You forever in the next. Amen.

Since I've read it, I can't stop thinking of the third verse. Specifically the part about being reasonably happy in this life and that it does not say supremely happy in this life. And, I think, YES, I am reasonably happy in this life and I find a lot of comfort in this thought.

Monday, August 3, 2009

Moving Forward

It's been a while since I've written about all the things that are going on here and, well, the girls just seem to be getting So. Much. Older! Really, when did the get so big? Emma completely lost whatever baby look was left to her and, at well over 3' tall is almost as big as Julia. In fact, they can pretty much wear the same clothes. When did my baby grow up?


Julia is getting so big now, that I'm amazed that she can do everything "myself!" She gets herself dressed, complete with shoes, each morning. She has such adult conversations with me and has taken to going everywhere with her purse and make-up. Then, she asks me why I'm not wearing make-up! Her favorite song is Just Dance by Lady Gaga and asks us to play it for her frequently so she can dance and strike poses that makes Chris go crazy then she laughs and laughs and does more poses. I find this entire routine quite funny, so that just eggs Julia on and Chris finally leaves the room. Julia has also taken to telling me that I'm her girl, calls me Sweetie, and tells me Awww, you did such a good job. Really? Are you 3 or 53?

Here is a video of Julia dancing around one night before bedtime (mind you, she doesn't look a bit tired but I can assure you that I was exhausted).

video

Other things to comment on:
  • Julia has a favorite imaginary cat named Connie that also has a sister. Julia is the therapist for Connie's sister and writes notes about her progress. She is very busy traveling to see all the babies and doing therapy sessions. Julia has the biggest heart of any 3 year old I know.
  • Julia loves camp/school and is upset every Thursday and Friday morning when she finds out she doesn't go to camp that day. It's great that she loves camp and I've really seen a huge difference in Julia since she started in that she isn't as shy anymore, but I miss her on the days she is at camp or school and look forward to the days when "just us girls" get to hang out together.
  • Emma ROLLED OVER! from her back to her belly - twice. The first time was July 20th (Mom, add that to the book) and the second time was on July 30th. Both times she did it like she's been rolling from her back to belly her whole life rather than us working on it for well over a year! GREAT JOB, Emma!
  • Emma has recently showed a huge interest in crawling. She is making progress on comando crawling when I put my hand at the bottom of her foot so she can use it as leverage to push her foot off and move forward. When she is laying on her belly, she can bend her legs at her knees and keep her feet in the air and even try and reach for items. What progress! We'll continue to work with her and hope that she becomes mobile and we have to childproof the house - can't wait for that!!!!!