sister's going to walk one of these days....

We had a joint OT/PT session on Wednesday. I love these....it is great watching Beth and Adam collaborate, and I feel like something really good always happens at these sessions. There is still work to do, but Shelby is getting closer to walking and it is a beautiful thing to see.



Pretty exciting, huh? We're going to the orthotist to get Shelby fitted for new A.F.O.s this afternoon. I can't help but think that these will be the braces that she learns to walk in.

OT and PT this week...

Shelby's therapy sessions this week have been a study in opposites. I left work early on Tuesday to pick Shelby up from daycare in order to take her home for PT with Beth. Shelby fussed and cried and screamed the entire time and virtually nothing was accomplished. Although she did do some standing. I was incredibly frustrated Tuesday evening....these sessions are not free, and leaving work early is hard, so for the entire session to not be worthwhile because Shelby was grumpy did not sit well.

This may be the only time in the entire 45 minutes when she wasn't crying.

Today I was nervous because we had OT with Adam this afternoon, and I didn't want a repeat of Tuesday. Thankfully, she did great and showed off some crawling skills for Adam. He also worked with her on using both hands to hold and drink a cup.

Usually she gets mad when people "help" her, but today the princess was tolerant.

Using lefty on the iPad while Harding eats his afternoon snack.

Adam tried to get her to climb up the stairs to get a toy, but she wasn't sure.

After Adam left, I looked over and Shelby was climbing the stairs on her own....the little stinker! Not sure how I feel about this, we may be in trouble!

There she goes! Thank goodness we had a productive therapy session today. I think that Tuesday was just a fluke....everyone has bad days from time to time....

Shelby - various updates

Shelby's been a busy girl this summer. She has seen her various doctors (all 5 of them), had a CT Scan, an EEG, and kept up her regular appointments with her three therapists. I have talked about her self-feeding milestones, but she has made significant progress in other areas as well. As Beth, her PT said today, this has been a summer of awakening.

Shelby had an EEG done before going to the neurologist at the end of June. Dr. Poplawski was pleased with the EEG, as compared to the one she had back in December. The Dec. 2010 EEG showed epileptiform discharges on both sides of her brain. The one in June showed less frequent discharges, and only on the right side of her brain. We decided to keep her Keppra levels the same.

Our physical therapist and orthopaedist decided that Shelby was ready for orthotics, so she was fitted for Cascade A.F.O's in June. Shelby is wearing them most of the day now, and it has been fine. They help with her stability and she is tolerating the standing position more and holding her left foot in a better position with them on. So far we have been pleased.

We had Shelby's 2-year well visit with the pediatrician a couple weeks ago. She is still in the 3rd percentile for weight at 22 lbs, but is now in almost the 75th percentile for height at 34 and a half inches. Since she has been eating so well, we are not nearly as concerned about her feeding intake. Dr. Love said she will probably be tall and thin like her dad. He was especially impressed with Shelby's language skills, which are pretty much on target for her age. It feels really good to be able to say that she is "on schedule" for something developmentally.

On a much lighter note, I was able to get Shelby to sit still long enough to french braid her hair this morning for the first time ever. She looked adorable:

And lastly, Shelby seems to be in a really good place with her therapists right now. We had a rough spring as far as therapy goes...Shelby seemed to shut down and resist any of her therapists efforts. Thankfully, she has done great with PT and ST this summer. I had mentioned that she started with a new OT recently. He is enthusiastic and has plenty of ideas and Shelby seems to like him, but the two of them have been engaging in a power struggle that has held up progress--you know how stubborn she is! Today we did a joint session with PT and OT and we had a breakthrough. Shelby did great, and the entire hour was actually fun for everyone involved as you can see from the pictures below:
Two different times, Shelby started to pull up by herself at Harding's train table. I hope to see more of that in the near future!
The nice thing about having the summer off (besides being able to go on multiple vacations) is that I have been able to be at all of Shelby's therapy sessions. She has come a long way this summer, and I feel like we are in a good place going into this school year. We'll be doing some type of modified constraint therapy in the fall and I'm looking forward to seeing what she'll do with leftie then.

CIT Recap and recent "inchstones"

I've finally recovered enough from the three and a half weeks of constraint induced therapy to write about it. The good news is that Shelby made significant progress with her left arm and hand. She did not gain supination or learn how to hold things, but her arm got much stronger. She learned how to use the left arm for support and she started reaching up and touching objects with her left hand. The really neat thing that happened as a result of casting is that Shelby now knows how to purposefully isolate her left hand. Even two weeks out of casting, if we ask her to turn a page or touch my nose with "lefty" she can do it. We still have the cast and plan to use it during OT sessions in the near future.

In other news, Shelby has all the sudden become interested in walking. We can hold her hands and stand behind her and she will take steps across the room--grinning the entire way. She has even cruised a tiny bit while standing in front of the couch. This is exciting, but she still has to figure out how to pull herself up to a stand. We'll be working on that in PT.

Therapy is a challenge these days with our stubborn, independent, and willful Shelby Frances. She likes to do things on her own terms and she doesn't want any help. She has started to throw major tantrums when she thinks we (as in mommy, daddy, grandparents, therapists) are trying to "help". I guess this is typical for her age. At any rate, we measure progress in inchstones around here and all of Shelby's recent accomplishments are incredible!

random update

Constraint therapy update:
Shelby has started to use her left arm a whole lot to reach out for things. She has also gotten really good at carrying toys with her mouth, which is not the goal of this therapy. Our girl is resourceful, that is for sure. Shelby still struggles with using her left hand though. Last night, she was reaching out for my father-in-law's glasses, grabbing them, and throwing them on the floor. To the detriment of his glasses, John let her play this game repeatedly, and she got some good practice with grasping. I'm thinking that in the week we have left of constraint therapy, those fine motor skills are going to really develop. I am home with her this morning because a) I really miss her, and b) Beth is coming over for a PT session. Shelby does her best therapy work at home, so I'm hoping we'll have a good session together.

This whole 3-week-casting-with-daily-therapy-appointments thing has gotten me reexamining my priorities. I wish I had more time with Shelby. With the economy in the state that it is in, I know that we are incredibly blessed. Trip and I both have good jobs and I get excellent health insurance through the state (which is a must with Shelby's medical conditions). Trip's job has enough flexibility that he can go to many of Shelby's weekly therapies. Shelby is at a great school and her teachers and therapists are wonderful. We are blessed to have my parents and Trip's parents nearby--they are always more than willing to help out and we couldn't do it without them.

However, juggling and organizing everything can be exhausting and I really miss my kids. On days when teaching is tough (and let's face it, I teach middle school, there are those days), I long to be with my daughter who has some special needs and would probably benefit from having more time with me. But that is not really an option for us right now. I do know that there are things I can change though. I have realized that teaching full time and taking two graduate classes is WAY too much for me and my family. I will definitely be scaling back on my counseling classes in the future. Until then, I'm taking one day, week, and month at a time, attempting to make the most of the time I do get with the kids, trying not to be too hard on myself, and counting my many blessings.

Constraint Therapy, Round 2

About a year ago, Shelby had 3 weeks of constraint induced therapy (CIT). In layman's terms, a cast was put on her favored right arm to force her brain to learn to use the left arm. It was amazingly successful and Shelby started using her left arm for the first time during that three weeks and continued afterwards. Here are the blog posts we did about it:
http://shelbyfrances.blogspot.com/2010/02/constraint-induced-therapy.html
http://shelbyfrances.blogspot.com/2010/02/constraint-therapy-update.html

Anyway, Trip and I have decided that Shelby is ready to do casting again. Her left arm has gotten stronger and she isn't fisting her left hand nearly as much as she used to. We're hoping to accomplish a couple things through this round of CIT with Shelby: develop some fine motor skills with the left hand and learn how to play bilaterally.

We are really looking forward to seeing Shelby increase her strength and skills with that left arm and hand during the casting period. However, I am not looking forward to dealing with Shelby's frustration and wrath over having the cast on! She can be pretty stubborn.

Oh well, she is ready for this therapy and the cast goes on tomorrow. Shelby will have PT or OT every day during the three week period. We'll keep you updated.

Shelby Updates

It has been a while since we've written about Shelby.  So much has changed with her in the past few months so this post is past-due.

She has been sitting up from a lying position without assistance for a few weeks now.  I had been thinking she would start doing this for a while now, but she seems hesitant to do anything until she really knows she has mastered it.  Now it seems effortless.

Her PT has been going really well, and she has been spending a lot of time on her hands and knees, and can even pull up to that position from lying as well.  I really feel like she will be crawling soon.  She's also getting better at standing (while supported) and can pull up to standing pretty much on her own.

One of our biggest concerns of late has been her feeding.  She has never been one to eat much, and she has always thrown up at the slightest hint of texture or because of new flavors.  Well, I don't want to jinx ourselves, but we have seen some good improvement in this area as well.  We have been doing these mouth exercises with her twice a day for a couple months now.  Also, we have been steadily increasing the thickness of her baby food over the last two weeks.  I think all this has helped tremendously - she is now eating a pretty thick mix of food (one which even a month ago would have been unthinkable) and she hasn't thrown up in weeks.  Her appetite seems to have increased in the last few week too.

Shelby is also becoming a bit of a chatter box lately.  While she still does a lot of the baby sounds, she has a quite a few words as well - mom (ma), dady (da da), baby (ba), milk (mi), bop, papa, and a few others I am forgetting.  She also knows a lot of words that she can't verbalize yet such as body parts, her brothers name, her grandparent, etc.

So, in short, Shelby keeps amazing us and we are very proud of her.

Shelby update

First of all, I realized yesterday that we never blogged about the tremendous success of Shelby's constraint-induced therapy (the cast). It is common (and we expected) that Shelby would go back to mainly using her right hand and arm after the three weeks of wearing the cast. She definitely has done this. But, Shelby's therapists have been very impressed at the extent that she uses her left arm. The casting therapy seemed to literally wake up that side and give her brain an awareness of that arm and hand. She has maintained that awareness. In fact, the left arm continues to get stronger (she can now lift it against gravity) and she uses the left hand some. She does not fist the left hand nearly as much as she used to, although the left thumb is almost always curled and clinched inward. Shelby's OT has ordered a couple splints to keep that thumb open. Hopefully the splint will help her to use that left hand more for tasks such as grasping and feeding. So yes, constraint-induced therapy was a huge success. We will probably do another casting session at some point in the near future.

Those that talk to me regularly know that we have had some difficulty getting Shelby to eat. We introduced solids when she was 5 and a half months old, and haven't really progressed beyond the consistency of smooth texture baby food. It can be difficult to get her to eat that (it takes us about 45 minutes a feeding session, 3-4 times a day). Shelby has dropped on her weight growth curve since December, going from the 20th percentile, to the 5th, and then down to the 3rd. Her pediatrician thinks this is partly because she doesn't eat much and her body needs more than milk as she gets older to gain weight. Last week, we went to see a pediatric dietitian for some tips on getting more calories and nutrients into her. This was such an informative and reassuring appointment. The dietitian was very positive and reminded me that Shelby is still in the 50th percentile for height, which is a sign that she is growing, and may take after her dad (who is long and lean as well). We are about to bring in a speech therapist to work with us specifically on feeding issues and hopefully that will help. But since Trip and I have relaxed some, Shelby seems to be eating more. Last night, Shelby actually grabbed the spoon from Trip and pulled it to her own mouth several times AND she drank formula from a cup. This was a huge breakthrough!

Lastly, after a couple months of not seeing much progress in physical therapy, Shelby seems to be on the cusp of some big milestones! She has all of a sudden gained the desire to move somewhere. Before, she would just be content to stay in whatever position we put her in on the floor. If a toy was moved out of her reach, she would find something else to do, like rock back and forth or play with her feet. She is so close to rolling over and we are working hard towards this goal. This will be wonderful for her...she'll be able to roll somewhere and move independently. We are also working a lot on her hands and knees and shifting weight back and forth, forward and backwards so that eventually she'll gain the strength and balance to crawl. We are lucky to have a great PT working with us. I look forward to our weekly sessions with Beth, she seems to have taken a special interest in us and always makes me feel so good about Shelby's progress and development.

Constraint Therapy Update

We're almost two weeks into Shelby's 3-week stint with the cast on. The cast is now filthy and somehow, Shelby has figured out how to wiggle out of it twice this weekend (which may become a problem). I told Shelby's PT and OT on Friday that this therapy has been successful in many subtle ways, but that I was hoping for more dramatic results. Shelby is definitely engaging her left arm more. It is much more loose, and no longer hangs down by her side most of the time. She is also not fisting her hand as much. I was hoping that she would learn to take her paci out of her mouth and put it back in with the left hand. Yesterday, I turned around and saw her doing exactly that. Very exciting stuff. Check it out:

I'm interested to see how she does after we finish this three weeks with the cast on. I know that her left arm will regress to some extent because she will be able to use her preferred right arm. However, I think that casting has helped her to be aware that she has a left arm--hopefully she'll continue to put it to some use.

Constraint-Induced Movement Therapy

No, Shelby Frances did not break her arm. Because of the huge difference between Shelby's abilities on her right and left sides, we have decided (along with her physical and occupational therapists) to try constraint induced therapy. She will be wearing this rockin' hot pink cast 23 hours a day for the next three weeks. This was not a decision that Tiff and I came to easily. With the cast and the hip brace, Shelby really only has full range of motion with her left arm now--the arm that she can't do much with. We hope that will change in the next few weeks. This type of therapy was developed for stroke patients, but has been shown to be successful with children as well. Shelby is the youngest child ever to be fitted for a cast at Mission Childrens Hospital. We'll keep you updated as she progresses, her therapists think she has a lot of potential. In the meantime, here is some information on constraint therapy: http://ptot.chsys.org/default.aspx?id=2055.

Busy Busy

Shelby Frances working hard with her awesome PT (Beth):

This is certainly turning into a busy week! Shelby has PT this afternoon. The Governor Morehead folks called yesterday and are sending someone to our house tomorrow afternoon to do an assessment on Shelby and to start working with us. She'll be bringing brain stimulation stuff to help figure out how Shelby is functioning in her environment and will give me ideas on ways to help her. She'll also evaluate how often they need to come work with us. I'm very curious about how this visit will go.

Also, after a great deal of reflection on our appointment with the ophthalmologist back in June (where we were told that Shelby was seeing fine) and taking suggestions from various others, I have decided to switch ophthalmologists. Even though Shelby's eyes work great, the doctor should have prepared us for the possibility of a cortical visual impairment. Maybe the CVI diagnosis would not have hit us so hard if we had known it was a possibility. The opthamologist we saw is actually the only board certified pediatric NEURO-ophthalmologist in Western North Carolina, so he has to know something about hydrocephalus and the brain. Also, we were referred to him because of Shelby's nystagmus (which could have been a sign of seizure activity). Since he is a neuro-ophthalmologist, he should have known this as well and immediately referred us to a neurologist. Thankfully, Shelby is not having seizures though (and sorry about the tirade).

Several people recommended that we see Dr. Bashinsky who is another pediatric ophthalmologist in town. I called to schedule an appointment and they had an opening for this Thursday. Hopefully we'll know more about what Shelby sees after Wednesday and Thursday's appointments. So yes, this is turning into a busy week, but I am really glad to be moving forward with helping Shelby!

First Physical Therapy Session

We ended up deciding to go with the Early Intervention Program for all of Shelby's therapies. They are great--very family centered and it is all done at our house. I think that Shelby will really benefit from doing physical and occupational therapy in her natural environment.

Yesterday, our service coordinator (Molly) and the physical therapist (Beth) came out for the first session of PT. I don't think it could have gone any better. When they did her developmental evaluation at the beginning of August, she had some asymmetry. That has completely gone away. Beth was thoroughly impressed with Shelby's strength and coordination. She is holding her head up very well and doing great on her tummy! Also she can roll from her tummy to her back. In fact, Shelby is ahead of where most 3-month-olds are developmentally. Beth gave us a list of things to start working on--exercises that she would usually assign a 4-month-old. Shelby's just advanced like that. :)




One of my biggest worries lately has been that Shelby will get behind physically because of her cortical blindness. I've been wondering what will motivate her to roll over, crawl or walk if she can't see things that she is curious about and wants to examine more closely. It will be Beth and the occupational therapist's job to help us with this. Also, Molly is begining the process of referring us to the Governor Morehead School for the Blind in NC. They are based in Raleigh, but have satellite programs all over the state for younger children. I'm not yet sure what their role will be, but apparently they will come out to our house also.

In the mean time, we will be doing PT every two weeks, and starting occupational therapy soon. We also have a few different functional visual assesments coming up soon. These will be done by Shelby's opthamologist and the Governor Morehead folks and I hope that they will tell us that Shelby has some vision.