Wheelchair Unbound

Lily's wheelchair has finally arrived!! When Kayla and I went to pick it up, I was unsure how Lily would like it, how I would feel about it, and what it really meant for us. I mean, surely no mom can know for sure how she will feel when she goes to pick up a wheelchair for her daughter. I was nervous that I would be a blubbering idiot, but knew that I had to hold myself together and make the chair a wonderful and joyous experience for Lily. So I put on my big girl panties and headed out to Gig Harbor. When we put Lily in the chair, we were amazed that she absolutely loved it! (I might have told her that it was a fairy throne and that special fairies made it especially for her--and there is some percentage of chance that's true, so we'll go with it). She sits aligned correctly and has the support she needs to interact and play. We've tested it out and not only will she sleep in it (which she would not do well in her stroller), she also loves to play and feed herself in it. We went to the mall and she lasted over an hour! This is not something we could do before without Lily becoming very unhappy. She had to either lean back and see nothing or balance herself sitting up which was exhausting to her. This has opened amazing doors for all of us, and most especially Lily. Tonight we went out to eat and had the best time that we've had in ages. She was faced toward us at the table. She fed herself. She played. She laughed, and before we knew it, it was 7:00!!! I don't ever remember us ever being able to stay out that late nor Lily being able to sit at a table long enough for us to get through a whole meal with her wide awake and enjoying it like all kids should have the opportunity to do!!! Now I want to take her everywhere just so she can experience life on a whole new level! I have not needed to have a big cry or work out my emotions over this because seeing Lily's smile and life experience enhanced in this way brings me nothing but joy! I'm, correction, WE are on cloud 9 3/4, and I can't wait to enjoy many, many adventures with Lily's new wheels! 

An Awesome Day

Lily was full of smiles today! After hearing daddy's voice on the phone, she said "dad!" She pointed at objects on the ipad. She got on all fours to get to toys. She gave full eye contact and even stared at me with a big grin. She sat up on the couch like a big girl to watch a movie. What a fabulous day!!!!

Swim Therapy, Orthopedic Shoes & Genetic Testing

This is a busy, busy week. Besides the fact that she spent Sunday night in the ER, Lily has home school 2 times, physical therapy, orthopedic shoes casting, genetic testing, and horseback riding this week! Better busy than bored, I suppose! We're excited for Lily to start swimming again! She loves the pool and does so well in the water. The orthopedic shoes should help with Lily's toe pointing and keep her feet in a more stable position. The blood testing is to see if she has a genetic proponent to the adverse reaction to sodium channel blockers...along with a few other things.  She is resting a lot today. I think the emergency room wore her out...as it did me. I could do an entire blog post on the inappropriate things hospital staff say to moms of disabled children, but I have a life to carry on with, so I'll save it for another time and place. It'll probably come out when Alicia is here for a visit!! She understands crazy nurses like only a NICU nurse can!!!

Learning to Stand

Lily is using this stander to help strengthen her legs, stretch her calf and hips, and give her a more proper alignment which will also help strengthen her. She seems to enjoy it, or tolerate it very well. Joy, Lily's physical therapist, is really awesome. She has a lot of experience and knows well what Lily is ready for and what is benefiting her and what needs to be adjusted in her therapy goals. Lucky us to have her on our team!!

ER by Nightfall

I literally wrote the last post on how great we're all doing. By dusk, Lily's at the ER. She was screaming and crying in pain for 2 hours. ER is packed. Crazy crazy life!!!


Lily had an abdominal X-ray and it showed that she had a lot, and I mean a lot, of gas. A little maalox and she seems to be feeling much better! Urine and ears were clear, so we can only assume that this is what was bothering her. Whew!!

Happy St. Patrick's Day!!

We have had a very good few weeks. Lily has gotten over her ear infection and yeast infection and is only having a few seizures a week (still unbelievable to me)! She's been having some tummy trouble lately, if this doesn't remedy pretty soon, we'll take her to the doctor. She, just in the last 2 days, is again feeding herself each meal! YAY!! We gain and lose skills and it's always good to get one back! Plus feeding her is very time consuming so it leaves me with more time and energy to do other therapies with her. Things we've been working on--1. feeding herself again (achieved, woo hoo). 2. playing in a tall kneel. 3. putting weight through her hands while on all fours. 4. using the ipad and sign language to communicate. 5. Imitation  6. (this is the best one) Horseback riding to gain core strength and balance.

We always have other things we're working on but these are the main focus right now. Our lives have also been so much better with Lily's seizures down and we have asked Kayla (our nanny) to do more hours which allows more time for me to exercise, run errands, clean, and get some mommy time.

More than anything we're doing, the horseback riding is helping Lily to become so much stronger. Watching her do it brings tears to my eyes, not only because she loves it and is doing an amazing job on the horse, but because of all my family has done to help! My mom, Kim, and Don have all donated money to sponsor rides for Lily, which has meant that we were able to get so many rides, plus her wheelchair and even be able to continue riding this summer!! Lily is going walk someday, and she has so many people cheering and helping her get there!!! I have a wonderful family and am so thankful for all of their help!!! We were just checking last months medical budget and we spend $2000 a month, minimum, on medical, and that does not include any unexpected medical bills, bills on the back burner, equipment, or unexpected testing and labs, so having help to get Lily more therapy makes me so happy and humbled!!!  Thank you to my wonderful family!!!

Lightning Bugs

Working on some fine motor skills today. The tongs have a little light in them that makes the gummy bugs glow. :)

A Great Few Days!!!

Proof

So we've gotten rid of the Lamictal and Trileptal and now are fairly certain that sodium channel blockers are a no-go for Lily. She is down to having only a few seizures a week (for over three weeks now)!! Also, she is feeling much better from the double ear infection and yeast infection. She's making leaps and bounds with horseback riding, and we can see that she is getting stronger and really loves being on the horse. Because of help from family with the costs, we should be able to have her continue to ride this summer--something that I really believe will help her to walk!

All this said, when something happens that surprises me, it really has to blow me out of water because our roller coaster is quite steep and has intense ups and downs. So today, when Lily's teacher told us that Lily is doing so well with school and meeting so many of her goals that we need to rewrite the IEP, I was elated!! She is counting to 10. She can identify colors. She can identify her name...and more, but also really impressive is that she can count objects. This is ahead of what she would be expected to do at her age even if she didn't have tuberous sclerosis. This is shocking and it isn't as well. We've always known that she is smart; we can see it even though she doesn't talk and many things fall behind for her developmentally, we still knew that she could understand so much more than she could express. But to have proof of what we knew fills me with such hope and gives confirmation that when she laughs at our jokes and when she protests to a question that she really is understanding us and giving her opinion. She is absorbing her environment and giving us little glimpses of what it is to be Lily. But also, we know that Lily is learning all of this and finding a way to express it because she has an amazing teacher. Lily gets so excited to see her and is motivated to work with her! We love Ms. Sharon and will always be thankful for her working so hard to see that Lily has the best chance to do anything her little heart desires.

Sunshine in the Sound!!!

When the going gets tough...put on a tutu