- raised $
Emily’s diagnoses includes cerebral palsy, global developmental delays, myoclonic astatic epilepsy, apraxia, sensory processing disorder, and re-flux.
UPDATE Written by Mom: April 2016
Our month in Michigan just flew by and we are adjusting back to regular life in NJ. Our trip went very well, overall. We were blessed with good health this time around, which really helped things go smoothly. Despite her very busy therapy schedule, Emily put in solid effort during each PT session at Euro-Peds, and during each speech/oral motor session at the Kaufman Center. We squeezed in a short nap in between, and I typically carried Emily out to the car and she continued sleeping during our 20 minute ride to the Kaufman Center in the afternoon. Despite that, she still woke up and put in a good, solid effort in her afternoon therapy sessions. That carrying Emily around thing may not be feasible, in the not-too-distant future. She always gains weight during the intensive therapies, mostly muscle, but this year I brought home eight more pounds of Emily then I took to Michigan!! I think full-throttle puberty has something to do with that, but it’s definitely muscle, too!!
We worked a lot on Emily’s walking posture this time around, as her slight scoliosis has increased (thanks to puberty/estrogen, as has her seizure frequency), and she tends to bend at the elbows, punch up her shoulders, and fix her body in place as she walks. We had Emily practice walking with her arms in splints, and she made some nice progress, as you can see in the picture. We definitely need to continue that work back in NJ, but as the picture shows I was happy to see Emily bring her shoulders down and start moving her arms more appropriately. She didn’t seem to mind lifting weights in the Ugle as much this year, and Mel and Ciera made it as fun as possible, with assist from Emily’s various Bert dolls. The picture of Emily on the bike, with her therapy team, was taken at the end of her final session at Euro-Peds – still smiling despite being pretty worn out after four weeks of intensive therapies. Emily made some nice progress in stepping up and down from a high bench, kicking a ball, and in doing squats while standing on a balance board. While supported by bands and a harness in the ‘cage,’ Emily even started to get the idea of the mechanics of jumping, which was pretty cool to see. I’m really looking forward to continuing and furthering these gains, at home and in school, through use of the home exercise program developed by Mel.
I’m attaching another picture that shows Emily saying goodbye to ‘Miss Emily,’ the OT who worked with her at the Kaufman Center. Emily made much progress in her oral motor work there, as her oral sensitivity decreased considerably. When we started at Kaufman this time around, Emily wouldn’t tolerate a lollipop anywhere near her mouth and her tongue primarily stayed stationary, flat in her mouth. By the end, she was taking a vibrating lollipop and willfully moving it around inside her mouth, and she had developed much more awareness of and facility in curling and moving her tongue around – all important components in production of sound. Emily also did well with working on the various sound she can make. She developed good facility in blowing various types of horns, along with a harmonica. I’m eager to see where we can take these abilities in Emily’s therapies at home.
Spring in Michigan was as unpredictable as always. I wore sandals during our first week, and we had snow several times during the latter part of our stay. We had a wonderful time seeing our friends at Euro-Peds and at the Marriott Residence Inn. We overlapped again with several other families we have seen at Europeans before, which is always fun. But we kept things more low-key this time around and really focused on enjoying our increased time together, Emily and I did manage to get out and enjoy ourselves a bit, at the Detroit Zoo and at a circus. We drove to the circus during one of the snowstorms, but it was worth it. In addition to an entertaining circus, they had an indoor amusement park set up with rides. As most of you know, Emily LOVES rides so that worked out really well.
While puberty is upsetting the apple cart a bit medically, for Emily, and she has some GI issues that will need to be addressed surgically in the near future, we feel so blessed that she has been able to benefit from another round of intensive therapies. It really makes a huge difference, in both her abilities and quality of life. Thank you all for continuing to support and encourage us on our journey, and for helping to make it all possible.
Update written by mom in 2014
Well, Michigan 2014 is shaping up very well, so far. Some health issues made for a mad scramble of last minute packing and getting things squared away in NJ before we could head out. Those issues have dissipated, though, and Emily and I have been doing well here in Michigan. We even avoided the car sickness Emily has developed in the past year or two, thanks to a prescription from her neurologist. That made for a much more pleasant drive up here. We settled right in to our usual suite at the Marriott Residence Inn, where we are very comfortable and treated like family. Given that this is our 7th year here, we periodically run across other guests who saw Emily during our visits in previous years. It makes me smile when they remark about how well Emily is doing and how far she has come. I sometimes lose sight of that, as I tend to focus on the next goals for Emily and lose that bigger perspective.”
During our first week here, Emily had an intensive course of therapy at the Kaufman Center for Children, focused on speech issues. We were there for two hours every morning, then another hour in the afternoon, after a quick nap. Her treatment includes oral motor stretching exercises and focus on getting Emily to produce sounds on command, use her breath/blow, and imitate. The latter has always been difficult for Emily, due to her apraxia and motor planning issues. Her therapist, Jessica, is really good with Emily and the perfect balance of fun and firmness/challenge. She has gotten Emily to consistently produce the sounds ‘m’ and ‘o’, and they continue to work on ‘b’ and ‘p’. Emily has also developed the ability to blow on a toy horn, and she has begun blowing on a harmonica, too. Lip closure is a big focus, along with proper use of a straw. Emily has been able to drink from a straw for a long time, but as with many things, she worked around her weaknesses and developed her own, unorthodox way of doing it. This is all hard work for Emily, and Jessica makes use of some of her favorite things as sources of motivation, including Pediasure, cheetos, pb& j, and access to some of her singing Elmo toys. God bless Jessica and her coworkers, who are willing to listen to repeated renditions of ‘Deck the Halls’ from Emily’s animated Elmo Christmas stocking! Anything for the cause! At one point during a session, I guess Emily was hungrier than we realized. Jessica was getting ready to prompt Emily to make an ‘m’ sound with a Z-Vibe, which she holds to Emily’s lips to prompt the sound. Well, Jessica was holding the Z-Vibe but looking off to the side and apparently not moving fast enough for hungry Emily, who took the Z-Vibe out of her hands, held it to her lips, and made the sound so she could get more pb& j!”
Jessica gets Emily warmed up with lots of fun swinging and time in the ball pit in their gym. She also climbs into the ball pit with Emily and does her oral motor stretching there, as Emily is not fond of those exercises and tolerates them more easily surrounded balls, one of her favorite things. Emily has also done two, thirty minute periods of Therapeutic Listening each day at the Kaufman Center, which is music played through open air headphones the child wears while playing and going through therapy tasks. Therapeutic Listening has shown good results with children who have attention, communication, sensory, and motor planning issues, like Emily. Our intensive week at the Kaufman Center is over, but for our remaining three weeks we aregoing back for 90 minute sessions with Jessica in the early evening, three days a week. Those are long days for us, but well worth it!”
A few days ago, we started Emily’s three-week stint of intensive physical therapy at Euro-peds. We visited Euro-peds a few times during our intensive week at Kaufman, once to be there for the Easter Bunny’s annual visit at the clinic. It’s been really neat to see Emily’s reaction to Euro-peds this time around. She was just absolutely thrilled to be back there. Unlike in past years, Emily was pretty non-plussed with the Easter Bunny this year. Instead, she just spent her time basking in being back in the Euro-peds clinic, wandering around to familiar spots, finding familiar toys and books, and giggling and smiling with the Euro-peds staff. Of course, now that the actual four-hour stints of intensive PT have begun, Emily is not always quite so thrilled. It’s hard work, no doubt. Again, her improvements from when we were here last year are pretty striking, but there’s lots more work to do.”
Emily’s therapist, Mel, has worked with her for the past six years, and is very good with her. She, too, is the perfect balance of fun and firmness, which gets the best from Emily. Treatment focus this time includes stair work (especially going down), work on strength and balance, and negotiating uneven terrain and obstacles (which Emily is notorious for NOT looking out for). In addition to putting the Therapy Suit on Emily, which applies a lot of pressure to force a child’s body into correct alignment while the therapist works with them, Mel is once again having her do some walking while wearing arm splints, to pevent her from bending at the elbows and fixing her body in place as she walks. Emily dislikes the arm splints, but they are effective in forcing her into a more normative body position as she walks. There is, as always, an aide who works with Emily too, assisting Mel while providing whatever entertainment or incentive is necessary to keep Emily going. This year we have Rachel as an aide. She has worked with Emily a bit before, and she is excellent at reading books to Emily as she works (the same ones, over and over)! We miss Karla, our wonderful aide from previous years, whose work schedule has changed so she is not there in the mornings, when we are. We stillget to see and visit with Karla sometimes, though.”
As always, we spend time on the weekend having fun, as a reward for all of Emily’s hard work. Last Saturday, we went to Zehnder’s Splash Village, the indoor water park we often frequent during our time in Michigan. We had a blast, and we rode the big water slides a record 16 times this year. That is myannual ‘fire fighter’ training, as I carry Emily up the flights of stairs to the slides on my back. She’s gonna have to stop growing if we’re going to continue doing that! As usual, the young lifeguard staff at Zehnder’s was wonderfully helpful, carrying a tube up the stairs to the water slides each time for us, and helping get Emily into and out of the tube with me. There was also a boy, Eric, who I would guess was about 12 years old, who helped us on the slides, too. He was there with his family, but came up and asked if he could help, and proceeded to carry a tube up the steps for Emily and I three times in a row. He was all ready to continue doing it, but at that point I told him I had to take a rest before we headed up the steps again. I made sure to go over to Eric’s parents and thank them for raising such a wonderful young man. On Sunday, we took a jaunt through the Detroit Zoo.