Little Four Eyes

Very cute in his new glasses!

The most noticeable change in little man’s life are his eyeglasses.  A few weeks ago his ophthalmologist said that Connor’s vision in his left eye was still quite a bit worse than his right and had not “caught up” as we had hoped.  Honestly, even without Joubert Syndrome, he would probably be destined to wear glasses at some point as my vision isn't the greatest.  And so Connor now has these nifty little glasses which he wears all day, every day and also an eye patch which is only for two hours each day.  The combination of the two is really quite the look!  He’s tolerating both ok.  He has learned how to pull his glasses down and off his face, but only does that a few times a day.

A patch and the glasses at the same time are
a bit much, but he's still smiling!

We finally got into the Neuro-Genetics clinic at CHOP after waiting since September for an appointment.  It was mostly a frustrating appointment for me – three and a half hours, four specialist, answering the same questions over and over, hearing about how far Connor still has to go, hearing about all the things that would be good for him in his development that we just don’t have the capacity to do right now.  All the other doctors and therapists have been with us almost since Connor’s diagnosis, so when I visit with them they see the progress.  This was the first time these folks had seen Connor so it felt like all they could see were the delays.  Hard, frustrating truths spoken.  Connor and I left CHOP that afternoon with a list of new recommendations for equipment, tests and therapies and tears in our eyes.  We were both tired – tired of so much.

Making a big, fun mess with bananas

Feeding has gotten a little better in the last few weeks.  We now offer Connor choices at meals – he can have a spoonful of puree or a puff (those little dissolvable cheese doodle like foods).  It seems that most of his tantrums were just a way of exerting control.  Which makes sense to me – eating is really the only thing Connor has control over.  He can open his mouth if he wants.  He can’t decide which toy to play with, what to wear, where to go or so many other things.  So he demonstrated his need for decision making through being a punk at meal time.  Hopefully this choices thing will continue to be enough to soothe him for a while.

Connor also continues to show interest from time to time in self feeding.  Today he had a delightful time playing in mashed bananas and then putting his gooey fingers in his mouth or his hair or his eye. :)  He also picked up the spoon several times and moved it towards his mouth.  Poor little buddy knows where that spoon is supposed to go, but his muscles just won’t coordinate enough to get it there right now!

Waiting for the dentist to come in!

And finally, another first for Connor today – his first visit to the dentist!  I was probably crazy to try it with this wiggly worm, but he still likes to brush his teeth so I thought he might not mind the dentist.  He did pretty well.  He let the hygienist brush with little resistance.  He wasn’t too crazy about the metal objects going into his mouth, but suffered through that for enough seconds for the dentist to declare his mouthful of teeth look good.


This last month has been super busy and crazy and quite frustrating at times.  It makes me think of one of my favorite movies “Silver Linings Playbook” and a great quote from there – “Excelsior.  Excelsior… It means you know what I'm gonna do, I'm gonna take all this negativity and use it as fuel and I'm gonna find a silver lining, that's what I'm gonna do. And that's no bulls**. That's no bulls***. That takes work and that's the truth.”  Cheers to the silver lining!

Farina Face

Getting messy feeding himself

We had a fun and unexpected break through this week. Connor showed interest and a little ability to feed himself!  It started with him sticking his hand in the bowl of Farina (kind of like grits) I was trying to feed him and then he licked his fingers with a little encouragement from me.  He did this several times and was quite pleased with the results!  His movements were a little jerky and his aim often off, so quite a bit of the stuff got on his face but he managed to get some of it in his mouth.  The next day at Carrie’s house he picked up the biter biscuit, put it to his mouth and licked it several times.  He’s also into holding the spoon himself for a few bites during meals.  Usually just three or four times and he’s had his fill, but he always smiles a big grin when he holds the spoon with me and we guide it to his mouth. Not sure where this little development will lead, but it’s exciting that he’s taking interest in doing it himself.

Aside from this new interest, feeding has been quite miserable the last few weeks.  With a cold right before Christmas and another one right after the New Year, his appetite and tolerance for anything but his bottle of Pediasure went right out the window.  Even now that he’s feeling better, meal times are hard.  He’ll take a few bites and then start crying and shaking his head.  There have been many days lately that he gets less than 20 bites of food all day.  He’s still drinking 2-3 bottles a day, so he’s not starving or anything but fighting to get food into him is not our idea of a good time.

So far so good with wearing the eye
patch again!

Connor has also started this strange head swaying.  He swings his head from side to side and his eyeballs roll up into his lids.  It’s a little dangerous when you’re holding him and he starts doing it as he doesn’t have a sense of where he’s swinging his head and it hurts when he makes contact with your jaw.  I’m pretty sure it is a sensory stimulation thing, but will ask the neurologist when we go next month. 

In other news, the ophthalmologist thinks it’s best to start patching Connor’s right eye again.  His left eye’s vision is worse than the right and it hasn't caught up like we hoped it would.  The doctor also thinks it’s time to introduce Connor to eyeglasses, so a pair of those will be in our possession in the next few weeks.

Never a dull moment in the Dean household!

Current requests for prayers and good thoughts – for Connor’s eating habits become more pleasant, for his leg braces to come in, for continued growth in self feeding, for an easy adjustment back to the eye patch and to the glasses.

Bonus pic of the kiddos reading together.  So sweet!

Connor's Top 10 for 2013

Happy  New Year!

Happy 2014 everyone!  A regular update blog post will be coming in the next week or so, but I thought I’d post Connor’s Top 10 for 2013 list as we reflect on the year and think about the one ahead.

10.  The end of 2013 brought Connor’s first successful attempts at munching or chewing on dissolvable  solids (cheese puffs, baby puffs).  While still very much a work in progress, he took some important first steps in this new adventure of feeding.  His awesome speech therapist and feeding expert, Deirdre, has been an awesome addition to the team.

9. Connor’s second eye surgery happened in May 2013.  This one was for strabismus.  We were so thankful and relieved when everything went well!

8. On October 26^th, we celebrated Connor’s 2^nd birthday.  Due to Clara’s insistence we had a great dog themed birthday party with family and close friends.  Connor took delight in the frosting this year and loved being the center of attention.

7. We’re hearing more and more sounds out of the little guy.  This fall he learned the sounds for four animals – sheep, horse, lion and cow (which sounds more like “ma” but we’re counting it anyway).  He can also identify the sheep, cow and horse on his puzzle.

6. After months and months of doing it for him, Connor learned “So Big” this fall.  Mama and Daddy both got teary eyed the first time he did this one.  Patience and practice paid off!

In his new stander

5. In January of 2013 we ordered three pieces of equipment for Connor.  If you’ve been following the blog, you know that it’s been quite the ordeal to get them.  By mid-October we had all three pieces.  The bath seat makes tubby time much more pleasant and safe, his positioning chair makes playing easier and his stander is a great way for him to build strength without us hanging on to him all the time.  While frustrating, the wait was worth it.

4. In the last month of 2013 Connor learned a new “trick”.  He can now follow the commands “legs up” and “arms up” while sitting or lying down.  It’s a huge thing for a little guy who has trouble with motor coordination.  He’s so proud of himself and likes to do it over and over.

3. This fall, Brent spent a lot of time working with Connor and his ring stacker.  Brent would go over the colors with him and I thought it was cute, but really not sinking in much.  Connor sure proved me wrong!  He can identify four colors (red, blue, yellow and green) with almost 100% accuracy!  A totally unexpected development, but we’ll take it!

Connor loves picking up the pieces of
his puzzle

2.  In September Connor started grasping things and he has made excellent progress with it.  He now loves playing with blocks, rings, rattles and puzzles.  He’s also started to pull Clara’s hair when he can get a fistful of it – never thought we’d be happy about him doing that, but it puts a smile on all our faces (except for Clara who says it’s starting to hurt because he’s getting stronger).

Sitting with our dog, Kota

1.  Topping off Connor’s Top 10 of 2013 list is his huge accomplishment of learning to sit.  In the spring he started sitting for short periods by himself and by summer was adding more and more minutes.  By the end of the year, we could sit him down and walk away without too much worry of him toppling over.  He’s sitting up straighter now, too, which means increased muscle strength in his core and back.

Those are just ten of the many blessings this year.  There were so many other ones along the way.  Here’s hoping 2014 brings days filled with learning, growth and love for all!

January 2013

December 2013

The Little Things

Frosting Face

We had a fabulous party for Connor’s 2^nd birthday.  There were family, friends, yummy food, dog decorations, cake and games!  Connor enjoyed the frosting on his cake this year.  He was quite the mess!  His OT was happy he had such a tactile experience!

Not a ton to report on the medical front, thankfully.  We are now followed by a great nutritionist through Early Intervention because we’re no longer seeing the nutritionist with the Feeding Team at CHOP.  She mostly monitors his weight and gives ideas about different foods and textures to try.  We’re also starting augmentative communication strategies.  A specialist was out and suggested really trying to teach “yes” and “no” both with words and head nodding.  She is also going to get him an iPad to work on fine motor and communication skills.  I think we’ll have a very jealous 8 year old on our hands soon!

I tried to get Connor into a developmental behavioral specialist to help figure out some ways to curb his tongue biting.  The wait list at CHOP is nine to twelve months long.  The next best place isn’t in-network for our insurance and so now I need to move to Plan C.  If you’re not sure what to do with your life, I suggest going into developmental pediatrics– there’s evidently a pretty big need.   I’m also trying to get him in for new hand splints and braces for his feet.  Hope to conquer that in the next two weeks.

First time in a restaurant highchair

Connor continues to make a lot of sounds, but really no new words.  He’s trying REALLY hard to say the “f” sound, so I think that will come soon.  He’s following more instructions like “pat the ___” and “hand ups, hand down”.  The 6,000 times we’ve all sung “If You’re Happy and You Know It” with him have also paid off.  He now claps (more like pats) his hands, kicks his feet and raises his hands up on the appropriate verses.  Carrie has also taught him to wave hi and bye.  He’s a bit more choosy with these, but he can do it!

Connor has graduated to two seemingly small, but VERY helpful stages for life out and about in the world.  With only some back support, he can now sit in a high chair at a restaurant and in a cart at the store.  So amazingly freeing to not have to drag his eating chair around and to not have to manage a stroller and a cart.

It’s been the little things this month – and for each and every one of those we give thanks!

Bonus pic of these cuties at the park this fall!

Sooooooo Big!

It’s hard to believe that in 36 hours our little baby boy will be two years old.  Not a baby anymore!  While this birthday isn’t bringing the anxiety that the last one did, I still feel this rise of mixed emotions when I think about it.  It’s hard to celebrate how far he’s come without thinking about or comparing it to other almost two year olds. 

But celebrate we will – Clara insisted we have a party, so we invited family, therapists and a few close friends to join us for dinner.  Clara wanted to know what the party’s theme was.  I was thinking a good theme was “Connor’s 2!”, but she had a whole other list of ideas.  We finally agreed on “dogs” as the theme since Connor loves our dogs so much.  I bought paper plates, napkins and such with dogs on them and thought we were good to go.  Clara then asked what games we were going to play.  I explained probably not any since it was mostly adults and Connor really didn’t know how to play any games yet.  She looked at me and said “Well without games it’s just dinner.”  Touché.  So now we’re planning games, dog themed games.  We’ll see how much gets done before either I run out of steam or Saturday night rolls around.  She just wants him to have the happiest birthday party possible.  Hard to argue with that.

Getting fitted for his positioning chair at CHOP

The big news of the last week is that we have received Connor’s stander and positioning chair!  He’s taken to them both very well, having playtime daily in both.  He stood in his stander for an hour the first night we had it!

We had checkups with the GI doctor and the feeding team this month, too.  The GI thought Connor looked great and wouldn't need to come back for four months.  The feeding team visit went really well, too.  Our Early Intervention speech therapist came with to the appointment so everyone could meet and make decisions together.  It was great to have her with Connor and I!  The feeding team, too, was impressed with how Connor was doing.  They urged us to continue to try to move him towards thicker purees in the hopes of introducing soft solids he can chew soon.  He had gained several ounces since our last visit six weeks ago.  To my surprise they said they didn't think he had to come back!  So we’re done with the CHOP feeding team, but will continue to work with Early Intervention therapists and maybe now a nutritionist just to be sure Connor’s making progress like he should.

Playing in his new stander!

And perhaps my favorite moment of hope and progress came tonight as we were playing before bed.  As we have for almost a year, we started playing the game “So Big”.  I asked “How big is Connor?” and he RAISED HIS LITTLE HANDS UP!  I was so thrilled I almost forgot to say “sooooo big!”  We did it over and over.  He smiled and I could tell he was proud of himself.  Brent and I both got teary eyed – we’d been teaching this simple little game for more than a year with very little evidence Connor was actually absorbing what we wanted him to do.  But he had been.  And for some reason, today was the day his brain decided to tell his arms to raise up.  It was beautiful.  It was one of the moments where you let yourself think “If he can learn to do this then he can learn to do…”

Prayers and well wishes are appreciated for continued progress with feeding, for the sore on his right hand to heal so he can start to wear his splint again, for Connor’s second birthday to be filled with joy and for our friends whose pending adoption of two boys goes before the court tonight in Ethiopia.

Yes, I Bit My Tongue

I must admit, patience and biting my tongue aren’t always my strong points.  But I’m patting myself on the back for doing both last week.  The little guy and I went to CHOP on Thursday morning to finally bring home his stander and positioning chair that we had ordered in January.  We were waiting in the room when the physical therapist and vendor rep rolled the stander in.  They took one look at Connor and the first thing out of both of their mouths was “This isn’t going to fit him”.  The stander that the PT who met with us in January ordered was for a child older and several inches taller than Connor was. 

While we were waiting for a call back from the original PT, I suggested we get to work on fitting his chair.  The vendor’s face went white as he looked at me and said “What chair?”  Sigh.  He grabbed his paperwork and started reading through everything.  He glanced up and said “I totally missed it.  The chair isn’t here. This is my fault.  I’m so, so sorry.”

We never heard back from the PT who ordered the stander and so we decided that instead of ordering a size down and waiting Lord knows how long for it, we’d add foot blocks to this one to give him some height and hope that does the trick.

An hour later, Connor and I walked out of CHOP with nothing.  I was proud of myself that I didn’t GO CRAZY on the vendor and PT.  I actually felt a little bad for the vendor.  I think he had had a pretty crummy week.  He probably apologized ten times once he realized he had forgotten the chair.  So I could have gotten upset and demanded things I knew they couldn’t give me, but I just laughed and figured what’s another three weeks of waiting when it’s been this long?  Frustrating and annoying, no question, but really what can be done at this point?

Connor also had a speech consult at CHOP and his Early Intervention review.  Through both visits it was decided that Connor would have a thorough speech consult with Easter Seals through EI.  He’s starting to make more sounds and probably has 10 words, but understands much more.   We think he’s getting frustrated with not being able to tell us what he wants.   I’m really hoping this consultant can give us effective and easy ways for us to help Connor learn to communicate.

September 2013

I know I’ve said it before, but I was reminded again at the Early Intervention review how incredibly blessed we are with the team that works with Connor.  His case worker does everything she can to get the services he needs, his therapists go above and beyond what they are expected to do in so many ways and I’m confident Connor wouldn’t be making the progress he is without Carrie, his amazing sitter.  It takes a village.  I cry tears of gratitude every time I think about the wonderful women that make up Connor’s posse. 

Continued prayers and good thoughts for healing for Connor as he’s had a cold for more than 3 weeks now, for his upcoming speech consult and plan of action and for continued patience as we await his equipment. 

Bonus pic!  I thought it was so cute to watch
Connor listen to Brent practice guitar.  He'd start
smacking his little bongo drums whenever Brent
played.  A budding musician!

September Updates

A few quick Connor updates for you…

Daytime hand splints

Today he was fitted for two sets of new hand splits.  He has day time ones that are small and thin and that will be worn most of the day.  These are to give a little sensory input to his palms and to keep him from tucking his thumbs.  The larger ones are for when he’s sleeping.  These will give his hand muscles a stretch and will hopefully train his body to keep those little thumbs out.

On August 29 I got the phone call that Connor’s equipment had arrived!  Unfortunately, they couldn't schedule us for his fitting until September 26, so we’re still waiting to actually have them in our possession.  But at least we know they will be ours soon!

Enjoying some beach time

Probably the biggest news in the last few weeks is that Connor has started hanging on to things put into his hands!  He likes tapping rhythm sticks, rattles and light weight toys on his feeding chair tray.  His grip isn’t super strong, but he’s doing great and seems to really enjoy his new talent!

The last two weeks of summer vacation were a great time for our family.  The kids and I visited my dad in Kansas, all four of us went to the shore for a week, Brent and I celebrated ten years of marriage, our family got to join in the celebration of Connor’s sitter Carrie’s 40^th birthday and we had some fabulous family photos taken!  So many blessings!

Happy birthday, Miss Carrie

And now we’re back to the madness of the school year – Clara started 2^nd grade and playing in the YMCA soccer league.  My work schedule has picked up again almost overnight as have Connor’s appointments.  So we’re adjusting back to longer days and less time together, but treasuring each day.

Thank you for your continued good thoughts, well wishes and prayers!

Family pictures September 2013