Hello March and we're still here...

Well, well....here we are in the middle of March. I didn't mean to take a vacation from this blog, but it seemed to be one of the few things that I could let fall through the cracks in what has been an incredibly busy month (although to be honest, our house has suffered as well). I'll try not to ramble too much in this update.

Shelby has had her cast off for a couple weeks now, and she continues to blow us all away with lefty. The whole 4-week round of constraint therapy was exhausting, but so worth it...she made an incredible amount of progress.
The post-cast period has been stressful for me as a mom, because I've felt a lot of pressure to work with Shelby constantly so that she won't lose all the skills that she has gained with lefty (and I've felt some guilt about not being able to work with her enough). But as you can see below, Shelby has her own way of telling me to relax (the little show-off).


You might have also noticed that Shelby got glasses. They must be helping because, for the most part, she has kept them on her face.

It has continued to be a warm winter, so we've been spending every spare second outside. Harding loves riding his bike and it is fun watching him do it. We've gone to the French Broad River Greenway a lot the past couple weeks.

The Gillilands joined us yesterday and I couldn't resist taking a picture of the kids in front of this Asheville graffiti. Julie measured how far we went, and the kids rode two and a half miles on their bikes... Shelby was strapped to my back as we chased after the kids and kept saying, "pedal pedal pedal".

Shelby has become so silly recently--she is constantly having fits of giggles. When she gets going with one of these fits, it goes on for awhile and the laughter is contagious. These happy fits are a pleasant change, because she throws her fair share of tantrums too.

Other notable happenings this past month included a trip to see the Daytona 500 for Trip and a weekend women's church retreat for me. The warm winter has spoiled us and we can't wait for spring...luckily it will be here soon. The weather is supposed to be in the 70's this week...bring it on!

On a sunny Sunday in February

We ventured to the park to let Harding practice his bike riding without training wheels. He took to it immediately--a sign we should have removed those wheels 6 months ago. I don't remember it being this easy when I learned to ride a bike (in 2nd grade).


After a few laps on the bike, we hit the playground. Shelby sure does love to swing. We're patching her eye a couple hours a day now too (same concept as the cast, but to strengthen her left eye).

Harding enjoyed climbing the giant tire tunnel and sliding down the fire poll.

Harding wrapped up the day at his friend Haven's bowling birthday party. Happy birthday sweet Haven!

And Shelby's day ended with OT and then a much-needed bath. She is still doing great with leftie, but she struggles with opening her left thumb, which makes grasping and releasing objects more difficult. I'm looking forward to seeing what her second week of constraint-induced therapy brings.

Appt. Week and Crawling

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We spent last week making up appointments we had missed back when Shelby was having her shunt replaced. On Monday we went to the orthopedist to check on her hip dysplasia. There was no change in the angles measurements of her hips from her last xrays in May. Our plan is to stay the course. Shelby will still wear the rhino cruiser brace at night. Dr. Hooker is hoping that when Shelby is up and walking and doing more weight bearing, that the mild dysplasia will correct itself. If not, then surgery will be considered. Honestly, Shelby's hips are the least of our worries at this point in time, so we're fine with the current plan.

We went to see Dr. Bachinsky (ophthalmologist) on Thursday. Shelby did great on her test with the orthoptist and her vision was measured at 20/180. It was neat to see the difference in her cognitive ability this time around. Sally would say, "Can you point to the stripes on the card?", and Shelby would! It made me feel like the test was a bit more accurate, althought Sally and Dr. Bachinsky said that Shelby's vision could be better than she tested. I had been worried that there was further damage done to the optic nerve because of the shunt malfunction. Dr. Bachinsky got a good look at it, and thank God that was not the case! Finally, Dr. Bachinsky gave us a prescription for glasses to fill if we want to. Shelby is far sighted, so they could possibly help her see better. We'll probably try them out, because we want to help her vision as much as we can, but honestly, I don't think she'll keep them on her head.

One more thing, Shelby has started crawling! A week and a half ago, Trip looked over and the little stinker was crawling upright on her arms like it was nothing at all. We couldn't believe it. Anyway, she has been doing that more and more and we are tickled to death. The weight bearing (especially on her left hand/arm) is so good for her! We are trying to get some issues straightened out with our insurance company so that we can increase Shelby's OT and PT and begin another round of constraint therapy soon.

Open House at Shelby's school Thursday night.

One week post surgery

Shelby is pretty much back to her old self one-week after her shunt revision. She is elbow crawling all over the place, talking up a storm, trying to pull up on furniture, demanding that her favorite songs be sung (with the proper hand motions, mind you) and continuing to keep us on our toes in terms of supervision.

We went to the pediatrician today (Dr. Love) for a general post-surgery check-up. Both incision sites are healing nicely, and Shelby now has clearance to return to PT, OT, and preschool. She'll resume those activities next week. The only difference we have noticed in Shelby since the shunt malfunction is her eyes. They are far more "jiggly" than they were before and they seem to get stuck upwards from time to time. Her brain was under pressure and the ventricles were enlarged during the shunt malfunction, so I am assuming the eyes may have been affected. I have emailed Dr. Grant (her neurosurgeon) about this and Dr. Love suggested I also contact Shelby's ophthalmologist as well. Possibly all this will go back to normal as the new shunt does its thing. I am really hoping Shelby's vision hasn't been affected by the shunt malfunction...time will tell. 

This experience was scary for sure, but not unexpected. Shunts can stop working for various reasons at any time. Now that we have one shunt revision under out belts, I feel like we know what to look for in terms of symptoms, and we won't question ourselves as much the next time this happens. We are hoping that Shelby will have this shunt for a really long time though. Thanks so much for your continued thoughts and prayers! We felt very loved and supported last week!

Shelbs doing "the elbow crawl".

Trying to pull up (she needs to be using lefty though).

She is obsessed with cars and trucks and says "vroom vroom" as she pushes them. Love it!

Summer projects....kid edition.

Shelby's Project: Eye Patching

Shelby's ophthalmologist suggested that we start patching Shelby's stronger right eye for two hours a day to strengthen the left eye (this is the exact same concept as the constraint induced therapy casting of her arm). Poor girl! This infuriates her and so far, the longest amount of time I've been able to keep the patch on her is 30 minutes. I can distract her for a little while with the ipad and her favorite toys, but then she remembers the patch and attempts to rip it off (which I know hurts). Then I move to things I don't normally let her mess with, like my cell phone or our computer. I'm hoping to build up to the full two hours of patching in the next couple weeks.

Harding's project - Swimming

Harding has taken swim lessons several times, but due to lack of regular exposure to the pool after his lessons, he hasn't been able to stay completely comfortable in the water. This summer, we joined a pool and are working on teaching Harding to swim in earnest. Here he is below with my mom and my niece Riley:

Appointment Rounds

Shelby just turned 2, so that means we have had check-ups with her various doctors in the past few weeks and there will be a couple more this summer. Here's a quick run-down of the one's we have had so far:

Orthopedist:
Asheville finally got a pediatric orthopedist at the children's hospital, so we decided to try her out (versus traveling to Shelby's previous doctor in Charlotte)--especially since Shelby's hip dysplasia is a minor concern. We liked Dr. Hooker and will continue to see her. They did x-rays and one side of Shelby's hip still shows borderline dysplasia so we are to continue with the hip abducation brace at night. Dr. Hooker also wrote a prescription for A.F.O. braces for Shelby's feet and she was fitted for them last Friday. They should come in in a couple of weeks.

Ophthalmologist:
Shelby did the visual accuity test and scored really low: 20/2700. Trip and I know she sees better than that. The doctor assured us that these tests are not accurate, especially when they are done on two year olds. Shelby was just fussy and not the least bit interested in looking at the black and white cards. Once Shelby is cognitively able to identify pictures, we'll get a much better idea what and how much she sees. It is obvious she is seeing a lot though, which is amazing to behold! Dr. Bachinsky said eventually Shelby will get glasses to protect her eyes and magnify things, but not yet. We also may look at doing surgery to correct her strabismus (eye crossing) at some point, but not yet since both eyes cross at times but not consistently. Dr. Bachinsky feels that Shelby's right eye is stronger than her left one (no surprise there), so we are going to start patching the right eye a couple hours a day in order to strengthen the left one (this is the same concept as contraint induced therapy for her right arm).

New Occupational Therapist:
We met Shelby's new OT on Monday for an initial evaluation. I am optimistic about working with him. He is a recent graduate, has many new ideas, and seems very enthusiastic. He also has experience working with people who are visually impaired. I liked how he came right in and instead of chatting with me, crawled under the table to greet Shelby and get to know her. She immediately called him "Matt" even though his name is Adam which is a good sign because Uncle Matt is one of Shelby's all-time favorite people. Some of our goals for OT include using her hands for bilateral play, learning to use a spoon for self-feeding, opening up the fist on her left hand, and increasing the use of that left hand. Adam has his work cut out for him because Shelby has her own ideas about what she wants to do during therapy.

We head to Duke on Monday for a CT scan and an appointment with Dr. Grant (the neurosurgeon). We'll see the pediatrician and neurologist in July.

Ophthalmologist and Orthopedist Updates

We have a wave of check-ups with all of Shelby's specialists every six months. It is that time again, so last week we went to the Orthopedist in Charlotte and yesterday we went to the Ophthalmologist here in Asheville. Shelby will have an MRI at the beginning of December which we will mail to her neurosurgeon so that he can check on her brain growth and shunt. Thankfully, if there are no problems we won't have to travel to Duke for that. Then Shelby will have an EEG and go to the neurologist after Christmas.

At Shelby's ortho check-up, Dr. Casey noticed that Shelby's left leg is shorter than her right leg. Apparently it is pretty common in cerebral palsy patients for the weaker leg to be a tad shorter, so that was not surprising. Plus, several family members on Trip's side have one leg that is shorter, so there are probably genetic factors playing into this as well. She may wear lifts to correct this in the future. Shelby's hip x-rays looked great. Her hip socket is deepening nicely. Shelby will keep wearing the hip abduction brace at night for another six months to make sure that her hip dysplasia continues to improve. We also talked about using AFO's (ankle foot orthotics) in the future on Shelby's left foot when she begins to pull up to standing because there is a good deal of muscle tightness on that side. Basically, Dr. Casey and our PT, Beth are monitoring Shelby closely. When she starts crawling and walking, we want her to do it as symmetrically as possible.

Shelby's ophthalmology appointment went well. Dr. Bachinsky was pleased with the huge CVI (cortical visual impairment) improvements she has made. Shelby is still far sighted, but within the normal range for her age, so no glasses at this point. When they dilated her eyes, Shelby's optic nerve showed no further damage than it did six months ago and that is not expected to change. I asked what the optic nerve damage meant for Shelby's vision. Dr. Bachinsky said that Shelby will probably need assistive devices in school to help her read. She also encouraged us to look into pre-braille instruction in a couple years. Learning braille will give Shelby another reading option on days that her eyes are tired. It is frustrating to not know how much your child sees, and we won't really know until she can tell us. But it is so exciting that she sees and that her vision is improving!

I feel so much better going into this wave of appointments then I did a year ago and am incredibly thankful for that. Shelby is doing great, which tells me that her brain is still "happy" as her neurosurgeon, Dr. Grant told us a year ago. It'll be nice to see it on the MRI too though. More doctor updates coming in the next month....

Shelby's Vision

Wow, two posts in two days and three in one week!  I guess a lot has been happening lately.

The latest news is about Shelby's Cortical Visual Impairment (CVI).  For those of you who don't know about CVI, it means that, while Shelby's eyes are fine, her brain damage makes it difficult for the brain to process what the eyes "see".  CVI can range from near total blindness to a very minor condition.  The other interesting thing is that it almost always improves over time.  What is unknown is just how much it will improve.

Shelby's vision teacher has given Shelby CVI tests that shows how severe her CVI is.  It is based on a scale of 1-10 (1 being very visually impaired, and 10 meaning that she sees almost normally).  I say almost because I don't think CVI every really goes away completely.  It is one of those things that can be really good one day, and bad the next.  Or it can get bad just because she's tired or sick.

Anyway, the first time Shelby took the test (less than a year ago) she scored a 2 out of ten.  Even this was fairly good news to us at the time, because when she was only a few months old, she really could not see much of anything.  Well, she took the test again yesterday, and her CVI score has improved to a 7.9!!!  Even her vision teacher is surprised at how much she has improved.  She said she typically sees that kind of improvement over several years!  And of course, it can still keep improving.

Once again, we are absolutely amazed by our little girl.  Keep it up Shelb.

vision update, petit mal seizures

This is another one of those good news, bad news posts.  I'll start with the bad.  When we were at the ophthalmologist appointment yesterday we noticed Shelby Frances kind of "go absent" for about 5 or 6 seconds while she was looking at a light-chaser toy.  At first we hoped she had just spaced out, but we called the neurologist anyway.  The nurse said that it sounded like a petit mal seizure and the doctor thought it might have been an isolated event that happened because of the light-chaser toy.  But now we have seen at least one more since then.  For now, we are just going to keep track of all the episodes, and will see what the EEG shows in about a month.  She is already on a pretty high dose of her current seizure meds (keppra), so the dr. may end up switching to a different kind. Of course we hate for Shelby to have any kind of seizures, but these are mild, and hopefully won't become a regular thing.  Also, that's the last time we will use any sort of light-chaser toy or any rapid blinking lights around her.  We have a bunch of appointments coming up in June, (EEG, MRI, neurology, neurosurgeon, pediatrician, etc) so I think we will know more soon.

Now the good news.  If you recall, last time we went to the ophthalmologist, Shelby's teller-accuity vision assessment was approximately 20/360 (which we were very happy about).  This time it was 20/130 (or better).  We were ecstatic about this!  What an improvement!  Of course we were expecting some improvement because we can just tell she is seeing so much better, but that was unbelievable. The doctor has not prescribed any glasses yet, but said that if magnifying glasses could help her in the future we would look into them.

Amazing

Some wonderful things are happening with our Shelby's vision!!

When she was diagnosed with cortical blindness, we were told that her vision would improve, but of course, only time would tell how much. I kept reminding myself of this and hoped that it was true, but in the face of yet another uncertainty about Shelby's development, it was so hard for me to get past the sadness and grief that I felt at the time. We communicate so much through our eyes. I remember thinking (very irrationally), how will my daughter know that I love her if she can't see me?

When people told me, she doesn't know that she can't see in an effort to make me feel better, it only seemed to reinforce for me everything that she was missing. I eventually was able to pull myself out of my funk though. Another hydrocephalus mom who I respect very much has written on her blog about finding a careful balance between acceptance and hope. I have gotten much better at towing that line. And lately, it really hasn't been difficult to hope, because we are actually witnessing Shelby beginning to see things.

It is amazing. On Sunday, Trip was shaking his head back and forth at Shelby while making a funny noise. She started laughing, and then imitated him by shaking her head just like he was. I know that this sounds like a small thing, but it was a huge step for Shelby. She had to have seen what he was doing pretty clearly to be able to mimic it.

Yesterday, there was another amazing vision breakthrough. This may be a bit masochistic, but I have always snuck silently into Shelby's room to get her up from naps. I creep over to her crib and slowly put my head right in front of her face, to test her vision by seeing if there is a reaction. I never got one without speaking to her first.....until yesterday. She actually smiled at me and babbled when I came into her line of vision. What a miracle!

I still would like to know how much and what kind of detail Shelby sees.... She has come so far, from seeing nothing at 6 weeks of age, to actually looking at us now. It is exciting to know that she will probably continue to improve. Plus, all this vision improvement is due to lots of new brain connections being made. Think about all the other good stuff going on in that brain of hers. Keep it up Shelby Frances!!

Shelby's Vision

First I want to say that yesterday during PT, Shelby tracked Beth's face with just her eyes for the first time!! This is a really big deal for two reasons. 1) The face is very complicated to look at and Shelby usually tracks solid, shiny or light-up things, and 2) This is the first time she has tracked while moving her eyes only and not her head. Beth and I actually teared up....it was so exciting!

Our ophthalmologist appointment was this morning with Dr. Bashinsky. First, they did a functional visual assessment to get an estimate of Shelby's vision. The ortho-optist held up different cards with a black and white pattern on them that got smaller with each card. She determined that Shelby's vision is roughly 20/360 (which is better than we expected). This is only an estimate because Shelby obviously can't talk and tell us what she is seeing and how she sees things (but, oh how I wish she could). Anyway, to give everyone a reference, legally blind is 20/200 vision or worse. But we have already seen significant improvement with Shelby's vision and are expecting that to continue. Hopefully one day, she won't be considered legally blind.

Dr. Bashinsky then dilated Shelby's eyes to look at her optic nerves. The optic nerves looked the same as it did 3 months ago and Dr. Bashinsky doesn't expect there to be any more damage. A couple other things: Shelby is still far-sighted, has a nystagmus (the eyes sometimes dance around), and strabismus (slightly crossed eyes). At around a year of age, we may look at some patching of Shelby's right eye to strengthen the left. Also, if she is still measuring far-sighted at that time, she'll get glasses to help with that. And the doctor may consider surgery to correct the strabismus when Shelby is two years old if she thinks that will help her vision at that time.

Overall, we're pretty happy about the results of this appointment. We know she is seeing things and that her vision will keep getting better!

Shelby and Beth doing some PT!

Shelby tracking Beth's face

Shelby and Daddy at the Ophthalmologist's

Brains and Books

Campbell Brown is doing a series on the brain this week called, "The Brain That Heals Itself". Her show is on CNN Monday through Friday evenings at 8 p.m. You can also view this series online at http://campbellbrown.blogs.cnn.com/category/brain-that-heals-itself/. This is really interesting to us for obvious reasons. It features interviews with Dr. Norman Doidge, author of the book, The Brain that Changes Itself, which I will be purchasing as soon as possible. Apparently this book has implications for everyone--not just people like Shelby whose brains have had some type of trauma.

Our reference library seems to be growing. I bought a textbook on Cortical Visual Impairment by Christine Roman-Lantzy that has really helped us to understand CVI. Also, my mom found us a parents' guide to children with visual impairments which has been unbelievably helpful. I wish that the neurologist or ophthalmologist had suggested either of these or anything at all for us to read when we were given Shelby's visual impairment diagnosis. We've got a book on making and adapting toys for visually impaired kids (most of the toys you can buy are just too visually complicated). We've also got a book on brain-injured children by Glenn Doman that my friend Shifra lent me. If anyone has other reading suggestions that might help us to learn about or help Shelby, please let us know. Knowledge is power and we plan to use it!

Progress

Shelby is starting to track some objects! I noticed before we went on vacation that when placed on her belly and supported by a bolster, Shelby would follow a flashing "light-chaser" toy that her VIT (visually impaired teacher) loaned us back and forth by moving her head as I moved the toy. She also seems like she might be looking at other things when they are very close to her, but it is really tough to tell. For example, she seemed interested in a tennis ball that Barbara found at the Folly Beach park, especially when we helped her touch it with her hand. She absolutely loves to play with an "emergency blanket" that her VIT gave us. It is silver and shiny and makes a great crinkly noise. Yesterday, she definitely followed it with her eyes back and forth when I was showing it to her on our way home from the beach. All of this is so encouraging! The neurologist told us that her vision will continue to improve as her brain learns to use it and re-routes itself, but it is wonderful to actually witness this happening.

Montreat!!

It has been raining for a week and it is supposed to keep raining! I was feeling a little stir-crazy this morning and was ready to get out of the house. Luckily, the Gillilands were feeling the same way, so we all headed to the Montreat playground for a picnic and some playtime.

While Julie and I sat with Shelby and Aubrey....

Harding and Derek splashed and played and got absolutely soaked!

Good times. :)

And now for a Shelby update. We went to see the new ophthalmologist on Thursday. I'm very happy to report that when the nurse turned off the lights, Shelby was able to track a flashing light toy back and forth. This is the first time I have seen her track anything--she does have some vision!! Unfortunately, after the doctor dilated Shelby's eyes, she noticed a paling of the optic nerve. This means that there is some damage to the optic nerve--we don't yet know to what extent. We're definitely sad about this because it means that even if Shelby can overcome the cortical vision impairment with her brain, she'll never have perfect vision because of the optical impairment. I'm willing myself to focus on the fact that she is seeing something though!

Yesterday, Karen from the Governor Morehead Preschool came over to meet with Molly (our Early Intervention Service Coordinator) and me. We mostly filled out a bunch of initial paperwork and talked, so there wasn't enough time to do a functional visual assessment on Shelby. Karen said that she is not accustomed to working with CVI children so young--usually that diagnosis happens when a child is 1 or 2 years old. The fact that Shelby's impairment was identified so early will definitely work in our favor. She also told me that most children with a cortical vision impairment improve with time. She explained that people with CVI sometimes get visually overwhelmed. For example: a person with normal vision might go into Super Wal-mart and feel a little overstimulated and stressed out, but a person with CVI might get so visually overwhelmed that they would be unable to see much at all, even if they have some sight in familiar environments. Another interesting thing about CVI is that often the peripheral vision is better than looking straight at something. A child with CVI will often look at something, then look away before touching it. Karen gave us a dvd to watch on cortical visual impairment, plus I've ordered a book on Amazon that is supposed to be helpful.

Karen will be working with us to find toys that Shelby will be able to see better. Shelby will at first need solid-colored (especially red) or shiny metallic toys that will stand out. Eventually we might be able to move to two-colored toys. She'll also be able to see them better against a solid background. John and Barbara have already made us a black felt board for this purpose. We also need to be careful about putting Shelby on the ground on dark solid blankets instead of light-colored or patterned ones. I think that the Governor Morehead preschool is going to be a really good resource for us and I'm ready to get started with working on Shelby's vision. Karen is coming out again on Tuesday.

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!

Neurology Appointment

There was an opening in Dr. Poplawski's office for yesterday at 11:00. Dr. Poplawski was great - he spent over an hour and a half with us, and talked about everything he knew as well as admitting that there are many uncertainties in Shelby's case. We left with good and bad news. First the bad:

He diagnosed Shelby with Cortical Blindness. This is an extremely scary term, but it basically means that while Shelby's eyes are fine, and react normally to light, she has problems interpreting the images in her brain. There are ranges to this condition, with the most severe being complete blindness. Most children with Cortical Blindness will improve as the brain readjusts the processing from the damaged area to other good areas. Dr. Poplawski expected this to happen in Shelby's case because we have not even seen the full benefits of the shunt yet. Also, we forgot to ask about this, but it seems like since one side of her brain was much less impacted by the hydrocephalus, hopefully that side will still function properly. This is still a wait and see kind of thing but the doctor was positive despite the scary diagnosis. He suggested that we do Occupational Therapy in addition to Physical Therapy to help her function better with the vision that she does have. More than likely she will always have vision problems, but we are just praying they are minor enough that she will be able to have a pretty normal life. Here is a fact sheet about cortical blindness:
http://www.blindbabies.org/factsheet_cvi.htm

Now some good news:
Dr. Poplawski said he thinks Shelby is NOT having siezures because the nystagmus did not change after taking Keppra. He took her off the medicine immediately. He said that the abnormal brain waves and discharges were very normal based on her hydrocephalus. He also felt positive about that getting better as the shunt continues to do its job, and her brain adjusts.

So, again Dr. Poplawski was awesome, and he will now pretty much be our go-to guy with any brain questions we have. Its nice to have a doctor in Asheville for that. He was very positive about the "before and after" images of her brain, and said that he thinks the brain will continue to expand. He was also impressed with how well she holds her head up, and lifts it while laying on her stomach, because she is slightly hypotonic (meaning she has decreased musle tone)--he thinks this will improve with time as well. We will see Dr. Poplawski again after our next visit to Duke (in December) where we'll get another CT scan.

Our next step is to get going with Physical Therapy and Occupational Therapy. Of coure we will update as we learn more.

Developmental Visits and Vacation Pictures

Shelby Frances enjoying her first dip in saltwater:

Lulled to sleep by the sound of crashing waves!

Our sweet girl:
So, we had a couple meetings with developmental groups last week before we went on vacation to Gwynn's Island. The first group was Early Intervention Program (run by the state of NC), and they came to our house with a pediatrician, a physical therapist, and a case worker. The second group was the Olsen Huff Center (part of Mission Hospital). They both said largely the same thing: Shelby has good muscle tone, and is progressing nicely in a lot of areas. She holds her head up well, and grasps objects with both hands. She also makes a lot of different cooing/gurgling type noises which impressed the EIP folks.

They both said they did notice a slight imbalance between her sides (with the left being weaker), but it did not sound too major. The Early Intervention people recommended physical therapy once a month, and the Mission people said once every two months. I took it as a good sign that she needs it so infrequently. They also said the imbalance is something she could completely overcome even without PT, but that PT would be kind of a preventative measure.

The main concern or issue now is her eyes. She seems to be a little behind in terms of how well she focuses on and tracks objects. I will say that in the last week it really seems like she's focusing on our faces more frequently, and for a longer time. She still has the nystagmus, which can be caused by: reduced pressure, increased pressure, damage to optic nerves, non-clinical seizures, or it may not be a big deal at all. Interestingly, Tiffany's aunt Dearing found out that if you cover her eyes during one of her nystagmus episodes, she quits doing it immediately. Don't know what that means.

I think largely because of the eye issues, both groups recommended we see a neurologist. So, we are getting an appointment set up, and they will do an EEG to get an in-depth analyses of her brain activity. This appointment has me a little nervous, because I think we will get a lot of info from it. We hope it's good. Anyway, we will update after that appointment. In the mean time here is link about EEG's: http://en.wikipedia.org/wiki/Electroencephalography

No Bad News is Good News

Lately, when we take Shelby Frances to her various doctor appointments, we aren't really looking for good news, we're just hoping not to get bad news. Fortunately, that has been the case this week and last week.

Today we went to Asheville Eye Associates to see the ophthalmologist. The doctor did a series of tests, and did not notice anything too concerning. Her eyes reacted normally to light. He did notice that she was a little far-sighted, but said that it could go away with time. Dr. Wiggins said that with hydrocephalus patients, the optic nerve is often swollen or discolored. Shelby did not have either of those problems. One of her optic nerves was a little under-sized, but he didn't think it would affect her vision.

He did tell us that he's pretty certain that the nystagmus (the jerking movement of her eyes) is caused by the hydrocephalus, and not something else. As we mentioned earlier, we are seeing it happen less these days, so hopefully it will go away eventually.

We have a follow-up ophthalmologist appointment in October to get more information. Here are some more pictures for those of you who have been requesting them.

The big brother and little sister before bed last night
when Trip was reading to them:

Another cute picture of Harding from yesterday: