Monday, January 26, 2015

31 months old & Botox / Phenol

The little dragons are now over the 2.5 year mark and inching closer to 3 every day. It's a little scary for us but we are so proud of them and all of their accomplishments. I especially love how great they play together and how much of a team they are. 

Thursday last week James went in for a minor surgical procedure; he had Botox in both gastrox (calf muscles) and Phenol injections in both hamstrings to combat his spasticity. James was fitted for new orthotics, SMAFO's (Supra Malleolar Ankle Foot Orthotics) while he was under anaesthesia. The whole procedure was under an hour; we spent a lot more time in Pre and Post-Op than anywhere else. 

The Phenol began to work right away and the Botox will show its effectiveness after 7 days. We could tell inmediately that James was more flexible; he didn't seem to lose any strength or endurance from the procedure. We'll see the final results when the Botox fully kicks in later this week. 

Our Physical Therapists were both happy with the preliminary results. James doesn't seem too impacted - in fact, he is as active as ever; he seems more comfortable sitting and has spent lots of time figuring out new ways to climb over furniture and in/out of chairs. He is pretty darn resilient. 

James found the ball pit at RMHC. 

Book: really anything right now - no favorite. 
Song: Maisie has seen Frozen a few times and is really into a few of the songs. We're late to the game on this one and I can't even name them. She also loves Mother Goose Club on YouTube and Caspar BabyPants. 
Words: Maisie is great at picking up words and implementing them into sentence use. The other day she asked if I was texting; last night she pointed at Jimmy and I and told us, "you're my favorite Daddy, and you're my favorite Mommy". Maisie struggles with "I, me, you", but she's working on it. 
Toy: Little people, dinosaurs, baby dolls, and anything else she can play make believe with. 
Food: cheese, cookies, pancakes, waffles, eggs, avocado, fruit snacks, blueberries, beans, rice, tortillas, quesadillas, Indian food
Animal: dog, kitty, monkey
Time of the Day: taking a "blath"
Activity: climbing - it's harrowing for us but really fun for Maisie. 
Color: blue
Clothing Size: 12-18 months, 18 month PJ's. 
Shoe Size: 4 
Weight: 21lbs at last checkup on 12/11/12
Height: 32 inches
Number of Teeth: 19+

Book: ABC by Dr Suess
Song: "Stompy the Bear" by Caspar Babypants
Words: James is doing very well with sentence development. He loves to describe what's going on and what he is doing. He also likes to get Maisie in trouble. Yesterday he told us, "Maisie shut the door to the play room", which she did. 
Toy: Balls continue to be the favorite and James has names for all of them. He also likes blocks, fire trucks, and other things he knows as "mine". He is possessive and gets angry when Maisie uses his stepstool, walker, or other things that are distinctly his. 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, rice, pizza, chili, tortillas, cheese, Indian food. 
Animal: dragon or bear
Time of the Day: bathtub time.
Activity: any kind of puzzle - he especially likes to figure out getting balls and toys in and out of a container. As you might imagine the possibilities are endless. James is amazing at putting away toys. 
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, and we are getting to 12-18 month pants due to length. 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide. 
Weight: 20lbs at last checkup on 1/22/2014
Height: 31.5 inches
Number of Teeth: 19+

Monday, January 19, 2015

Potty Mouth

The little dragons are unbelievably smart. Maisie is really into a curse word phase right now and definitely shows off her skills whenever possible. We can't post here for obvious reasons but it's safe to say she knows about 10 bad words and counting. 

Could you believe such bad words come from such a cute little girl? 

The best reaction is to NOT react, because otherwise she thinks it's hilarious and keeps on going. James gets in on the action too and repeats whatever Maisie says. Then they run around the house, screaming "@$/&" and "@&$/@&$!"

I guess we are learning that toddlers pick up their language everywhere - and everyone has to be super careful about their choice of words around these little dragons. We will try to stick to Caspar Babypants radio as much as possible to minimize the damage.

If you know Maisie, you'll know one of her favorite books and songs is Five Little Monkeys. In most of the portrayals, the monkeys are dressed like humans, and it is interesting to see how this translates to a two year old perspective. We certainly did a few weeks ago. 

In December we visited Fort Collins for an impromptu holiday choir concert. It was the little dragons' first concert and we were a bit concerned as it was orchestra and opera - but we thought it was worth a try. 

The kids were overall very well behaved and did a great job paying attention and not getting in trouble. Maisie pointed out Santa on several occasions and they had a blast getting silly stringed by The Grinch. 

Everything was going well until a beautiful young woman came up to do a solo. The theatre was very quiet in anticipation of this Opera student's solo. Maisie looked down at the stage, eyes bright with excitement, and shouted at the top of her tiny little lungs: "LOOK! A monkey!" 

We were mortified. 

Luckily I don't think the poor Opera major heard her, and the acoustics in the room prevented most of the audience from hearing her. 

We have been around people of all different backgrounds and cultures, so this was definitely something unexpected - a two year old's take on society. 

Proud mommy moment of the week: the little dragons got to play with their twin friends K&C up in Estes Park. It was an amazing to watch these kids, four babies who weren't given odds to be here, surviving and THRIVING!

Tuesday, January 6, 2015

Spina Bifida Occulta

Sometimes when you're going through treatments and therapies and surgeries, the diagnosis just goes by. Doctors don't mention it and unless you get a copy of the chart or specifically ask- and sometimes things are left unsaid. 

We got confirmation a few months back that James has spina bifida occulta, a neural tube defect that affects approximately 10-20% of the population. While some people have no complications or symptoms, James has definitely had problems. He has a lot of the hallmark issues of a spina bifida kid- the mobility issues, hydrocephalus, tethered spinal cord, motor skill concerns, etc. It's unfortunate for James that he was diagnosed so late and that his mobility was affected - but we realize that he is in a much better position than a lot of others and we are thankful for that. And finally, we believe that there is a good chance that James will continue to make progress as our Neurosurgeon is confident that there was little or no impact on the nerves around the spinal cord. 

A crucial agenda for us is working to build new neurological pathways and focusing on neuroplasticity with James. Recognizing that his learning style and developmental path is unique, we have added a few distinct therapies to help James reach his full potential. If there's one thing I know about James- it's that he is determined to succeed and will do it his way. 

James has been working with a Feldenkrais Physical Therapist weekly for the last few months and we have seen dramatic improvements in the way he moves. With Feldenkrais the idea is learning how to move, addressing existing issues and working around them. It is gentler and by nature, not repetitive and forceful like physical therapy tends to be. Historically James has had very solid motor planning skills but has recently accomplished the task of getting in and out of his high chair independently using a step stool, which is huge. He is forever looking for new methods and testing the waters, trying to figure out the best way to do things. 

Our new therapist is not replacing Early Intervention- merely working with James on common goals that will continue once EI ends in June. In a few short weeks we have noticed that James is much more engaged with our new PT. She has demonstrated a sincere willingness to help James with his needs versus attempting to force him into activities that aren't compatible for his interests or his functionality. It's been fascinating to watch and learn from. 

We also just started Gonstead Chiropractic - our close friend and fellow pProm mom Jill is a practitioner, and has seen amazing results with her own children. Jill has offered to work with both James and Maisie, with a goal of improving their overall health and well being. After the first session, we noticed immediate improvement in James's range of motion in his lower back and hips. His feet were also attended to, and following the session James had much more flexibility in his feet. It makes exercises, mobility, and therapy much easier. 

So where does this leave us? I have some hesitation with the Botox procedure, but I understand why it has been proposed. I am just not sold on the idea that it will help James. They've said Botox is effective for 3-4 months, but for someone two and a half that is a good chunk of time. He doesn't have a Cerebral Palsy diagnosis, and while there is some spasticity and tightness in some muscles- it isn't all the time and he has pretty good functionality that I don't want to lose. So, the more I try to envision the goal of getting James's feet to a good position for walking, preventing long term issues, addressing the pronation, and continuing to build muscle strength I just don't see Botox lining up with these goals. Perhaps there is another solution that would be a better fit, and we just haven't found it yet.