I’ve been writing this post in my head for months but struggled to sit down and DO IT until now. My therapist encourages me to write, write, write and read later. I think that’s what I need to start doing before another 6 months goes by. Lily has had so many changes; some subtle, some big and some you “cant quite put your finger on it” kind of changes. Because I’m with Lily 24/7 I miss the small day-to-day changes but I do see the big picture. But I did gather opinions from her therapists and caregivers on of some of Lily’s recent achievements.
Overall, Lily has a refined sense of “presence” and “awareness”. She stops what she’s doing and looks directly at people when they walk in the room and most times even mouth, “hello”. She is also usng her eye-gaze computer to speak for her. When she needs to get the attention of us to change the television channel or start a new show she no longer does a gagging motion instead she’ll touch you with her right hand or look back and forth from the television to you until you change it for her and use her eye-gazing computer to tell us. Before Lily wasn’t comfortable sitting quietly without any visual stimulation; she would always react with her gag reflex. Now she is capable of doing 3 hours of therapy without any visual stimulation. Instead she closes her eyes and concentrates.
Every part of Lily’s body is getting stronger and more coordinated. She is able to initiate movement faster, sustain positions longer and support herself with more weight and hold herself up through more trunk strength and control. Whether it’s in a sitting position working her core or laying down and independently moving her arms and legs she has dramatic improvement. She continues to do about 10 hours of physical therapy a week. She also has speech therapy and works with a teacher from our local school district about 8 hours a week. She was supposed to have summer session of schooling but that didnt work out (dont even get me started) and only ended getting about 6 hours. I wish she was able to attend school, she would have started 6th grade last week (sniff sniff). Lily has been with the same 18+ students since Kindergarten. It’s so neat to see them all maturing into little adults and blossoming into their features and personalities. But at the same time it’s difficult because I always try to envision where Lily would fit in, who would she pal around with or what boy would she have a crush on, what sports she’d play etc. So I try to keep my chin up and keep the faith that she’ll be reunited someday with her class.
As time goes by I have been able to compartmentalize my emotions. I’m now able to put them aside and enjoy myself with family and friends. I’m able to be less reactive to other peoples comments or conversations that I think Lily may be sensitive to; in other words I guess I’m a little less protective. I’m trying to allow Lily to “feel” and experience different emotions; good and bad, and build understanding. But there are no instructions how to “let go” a little; it just takes TIME. But when we miss childhood milestones like the beginning of a new school year it catapults me back into a dark place of pain and heartache. So even though I look and sound better my sadness can catch me off guard at any moment.
Getting back to her progress, she is making huge strides in eating by mouth. Lily has struggled with anxiety around eating. She had a swallowing study back in the beginning of the year and we discovered she was aspirating liquids so it’s easy to understand why she’s hesitant. We have stayed away from liquids and used yogurt and applesauce as our “liquids” to help her wash down her food. This has worked very well for her and given her more confidence. We have gradually increased her food intake over the last several months. It seems she is finding enjoyment in eating again. Where she had a pretty typical kid pallet prior to her injury she is now expanding to foods like Pad Thai, pasta with shrimp and pesto sauce, fettuccine Alfredo, Grandma’s blueberry pancakes, mashed potatoes with plain yogurt, even green veggie smoothies. And she loves Dutch apple pie, cherry Icees, vanilla ice cream, anything and chocolate. It takes a lot of discipline to find the time for meals between her therapies and other commitments but we are dedicated to rid her of tube feeding. Our goal is to switch her G/J feeding tube to just a G-tube at her next GI appointment in November. This would mean receive water, medicines, and supplemental formula in her stomach only. Ultimately she would need to consume enough calories by mouth and enough water to be off the feeding tube altogether. It will happen someday.
We have also added a new daily task to our busy schedule; diving in a hyperbaric oxygen chamber. We debated for a long time whether or not to try it. We kept looking online for that one person’s testimony saying it cured them. Well, we realized we are never going to find it. There is lots of research and testimonials claiming it can benefit anoxic brain injuries, but there are also testimonials claiming there was no difference in condition. It’s really up to one to decide if they have the time and the money to give it a shot. And Jim and I are committed to doing whatever it takes (we’ll sell our house if we have to!) to provide anything that has potential to improve Lily’s condition. So we decided to lease a chamber and commit to trying it for at least 90 days. Everyday (unless we’re out of town) Lily and I spend an hour 125 ft below sea level in our pressurized chamber while Lily wears a mask that delivers her pure oxygen. We’re about 50 days in so the jury is still out.
We also started seeing a Neuro-Chiropractor. He’s not a chiropractor in the sense of cracking bones, he is actually the opposite. He activates different parts of the body by stimulating and awakening the cells in different parts of the brain. He does this through sight, smell, touch and sound. Our goal is to activate her left side because it’s been slower to regain movement. He’s also stimulating her left frontal lobe to try to activate her speech center. We’re awakening the muscles and nerves in her pelvis and lower back to help increase core strength. I’ve learned a little of how complex our neurological system is and how it’s accessed and how it controls everything in our body. It’s also given me a deeper understanding of the enormity of the neurological trauma Lily’s system endured — and survived. And is recovering.
Lily is also continuing to be treated by a cranialsacral therapist. This therapy works with the connective tissues that surround the brain and spinal cord. Her therapist can manipulate the tissues which can improves the central nervous system function, reducing the effects of stress and strengthens resistance to disease. Her therapist has continued to treat over the last year her because she continues to see consistent improvement. One visable improvement is her breathing rhythm. She used to have short breaths that she would hold on the inhale but now her breathing has expanded down through her abdomen and diaphragm and has returned to a normal rhythm most of the time.
Lily’s voice is changing, too. She has a much louder and stronger laugh with different pitches and tones. We continue to work on accessing her language but until it returns we continued to strive for communication using her talking computer. After a couple professional consultations and their recommendations Lily has switched Assisted Augmentative Communication (AAC) devices from a Dynavox to a Tobii. The new device is better suited for her eye-gazing; it picks up her eyes in different positions with having to re-calibrate each time she moves her head. And the programming is much easier for me and so far has been glitch-free. The support is supposed to come from her school teacher and speech pathologist but they need more training so looks like I’ll be head programmer for now. But Lily is using it and seems to like it, too. We have a long way to really utilizing it but it allows Lily basic communication for now.
Since my last post it hasn’t been all work and no play. Ove the past several months we have made about 8 trips up to our home in Mammoth Lakes. We skied during the snow season and fished since Memorial Day weekend. Our last trip was Labor Day weekend where nurse Shenan, Auntie Lindsey and cousin Ava joined us. The weather was spectacular; some of the warmest days we felt all summer. At home we’ve done lots and lots of swimming, virtually every day. And in the beginning of summer we took a family vacation to Maui.
We (Jim, Lily, Charlotte, Nurse Dawn, Grandpa Joe, Grandma Shirley and myself) left for Maui the day after school got out; Friday June, 13th (it was also a full moon- good thing I’m not superstitious). It was quite the undertaking to take a trip like that with Lily. It took a lot of planning and preparation. Flying was a little intimidating but we are always willing to try something new with Lily. I shipped Lily’s supplies ahead of time but what I didn’t realize that someone travelling with special needs does not have a limit on number of travel bags. I’m learning! Getting through security was interesting. I had to call the airline prior to departure to tell them the model numbers of all of the electronic equipment travelling with Lily. Everything had to be approved on the FAA equipemt list in order to be used during the flight. The airport security was thorough. They tested everything from her formula to her water and dusted her, her chair and equipment. Lily and I flew First-Class because Lily needed to be able to fully recline and I needed privacy if I needed to change her during the flight. I wasn’t impressed with the flight attendants, they weren’t very helpful. But it all started with with reservation agent; when I asked her if LAX or the American Airlines lounge has a restroom to accommodate us (baby changing tables and a handicap stall with rails don’t work for us) she told me to “bring a pillow and a blanket” so I could change her on the public restroom floor!
After a smooth flight we arrived late Friday night. We enjoyed 5 days in Kapalua. Warm sun, afternoon showers, fresh pineapple, macadamia nut pancakes with coconut syurp (Lily’s favorite), MaiTais and Lava Flows and fresh fish. We spent the days in the pool and ventured out to the beach a couple times. We would have liked to have spent more time in the ocean but it wasn’t easily accessible with Lily’s wheelchair. And the only shuttle for wheelchairs was an old beat-up minivan with no air condidtioning. Disappointing. But I hate to complain becasue we were lucky enough to be in Maui, but all parents with a child with special needs can relate that it can be a cruel world to navigate. It is one of my hopes that I can one day make a difference for families.
Oh! How can I forget, Lily turned 11 on May 6th! We celebrated with a birthday party with a special guest; Mr. Bliss! Bliss is part of the therapy program at the Shea Therapeudic riding center. His onwer, Terri, who is also one of lily’s speech therapists made special arrangements to bring Bliss to our home. All the kids got to paint him with colored shaving cream and give him treats. It was a great party, one of a kind!
One the day of Lily’s birthday we all played hooky and spent the day at California Adventure.
Thank you all for continuing to pray and keep Lily in your daily thoughts and prayers. And thank you to those who continue to come and visit Lily and make her day. We are grateful that people care and follow her journey. Check back in October for Lily’s big Halloween plans, one of her favorite days to celebrate!
Leslie, what a true treat to read so many updates and to see how you ALL are doing and to see so many really great and happy photos. Pete and I can’t wait to see you guys and spend time in October. We miss you and look forward to a face to face catch up!
Do you have portage and conductive education in the states – it helped my son who was born with CP