Entering Battle

I’m about to enter into my first battle with the insurance company.  We received a letter a couple of days ago saying that our request for Connor to have a positioning chair has been denied.  Evidently a feeding/positioning chair is not a medically necessary piece of equipment.  (Aaaah!!!)  So now I begin the appeal process and battle with the insurance company.  Luckily, there is someone at CHOP to help with this and I’m optimistic we can prove it is medically necessary, but it just means Connor will have to wait several more months for this vital piece of equipment.  I’m happy to report, though, that they did approve his stander and bathchair, so those should be arriving in the next 4-6 weeks.

Other than the Pulmonary appointment on March 1, we haven’t been to a single doctor appointment in the last six weeks!  Unprecedented!!   There are many coming up in the next five or six weeks, but the break has been so nice.

The latest additions to Connor’s line up of tools are his very stylish DAFOs.  These orthopedic braces

support his ankles and help him learn how to stand.  He doesn’t like putting them on very much, but once they are on he’s fine and is tolerating longer periods of being upright.

Last week we had Connor’s Early Intervention one year review. This year has gone by so quickly!  We continue to be so blessed by this program and his amazing therapists, Beth, Sandy and Katie.  We spent

Connor is really into moving gears around and around.
Great work out for his little hands!

some time evaluating Connor’s progress and looking over the scales they use to measure his delays.   Connor’s physical and adaptive development (PT & OT areas) are at about 4-5 months – meaning developmentally, he’s like a 5 month old when it comes to gross and fine motor.  While we knew this, it’s always a little sobering to see it in black and white.  We haven’t gotten the scores on social development yet.  He’ll likely score higher there, but still not in line with his 17 month old peers.

Lil man sitting in his corner chair so he learns to
sit up straight and tall!

EI is adding in a Speech Pathologist to the mix of therapists to help with Connor’s communication skills.  I know he’s understanding some words and phrases now, but has very few ways of communicating to us so I’m hoping the SP can help him so he doesn’t get frustrated.

It was Friday, April 13, 2012 when we received a phone call from the neurologist with Connor’s diagnosis. 364 days now of our new reality.  In these last 12 months Connor has had 24+ visits to CHOP doctors, about 26 helmet appointments and approximately 170 therapy sessions.  I’ve learned more about the brain and development in the last year than I ever thought possible.  There have been some really hard days, but some really awesome and hope-filled days, too. Connor’s progress continues and our love grows. 

Here’s to the next 364 days!

February - The Month of Appointments

February 2013 was filled with doctor appointments, tests and mostly good news.

A check up with the gastroenterology (GI) doctor was easy and quick.  She was happy with Connor’s slow but steady weight gain and said to remain the generic Prevacid to see if it helps/continues to help with his choking and other issues possibly related to reflux.  She also recommended adding more fiber to the little guy’s diet to get his bowels moving on a more regular basis. J

We also had a repeat Barium swallow study that day and it went very well.  No signs of aspiration on thin liquids!  So we’re down to ½ TBsp of cereal in his 6 oz bottles now – down from 2 TBsp per bottle.

Connor had his 15 month check up with Panda Bear Pediatrics.  He weighed 21 pounds 9 ounces and was 32 ¾ inches tall.  The resident that is studying with Dr. Dominy was very intrigued by Connor’s diagnosis and asked lots of questions about Joubert Syndrome.  He apologized saying, “I’ve just never heard of this syndrome before”.  My response was “Join the club!”

Happy baby at lunch.  He was eating food with little
pasta chunks in it and he has figured out how to
spit out the little pastas rather than have to
learn how to chew them

On February 20 we had another follow up with the Feeding Clinic.  These are always hard appointments for me.  There are four specialists (Speech Pathology, Occupational Therapist, Nutritionist and Nurse Practitioner)  that work together for one, two hour appointment and while it’s really great to have them all in a room talking to each other, they each come up with 2-4 recommendations for changes or additions to Connor’s routine.  About two people into the recommendations portion of the appointment I usually get pretty overwhelmed.  This time was no different.  The biggest change is that they want us to move to pureed table food rather than the jarred baby food.  They say it’s more texture and calories.  My head spins a little with the thought of having to make all of his food as it seems like one more thing to do, but since he’s older now we can literally just put whatever we’re having into the blender and give him that (pureed tacos – yum!).  

And then there are recommendations like the one trying to address Connor’s oral sensory issues – “Touch Connor’s toothbrush to his lips ten times a day until he accepts the toothbrush on his mouth”.  It’s those recommendations that make me all the more thankful for Carrie, Connor’s sitter.  Fairly certain toothbrush lip touching will happen primarily when she has him as I just don’t see it happening as often at our house.  And on and on go the recommendations.  At the end of the appointment, I looked at these four ladies and simply said “We’ll do our best.”  Pretty much my mantra.

Sad baby at his sleep study

The following week was Connor’s sleep study.  It was horrible. He cried for three hours that night. The poor little guy had wires and goop all over him.  They had to wrap his head every which way to keep everything in place.  He had tubes up his nose to measure breaths which he HATED and figured out how to pull out which meant the tech had to put his arm in a straight brace for the night so he couldn’t reach his nose.  He finally fell asleep about 11:30 p.m. and slept until they woke him at 6:00 a.m. with only a couple little wake ups in between.  We were both ready to get out of there!

We saw the Pulmonologist today and she said the results of sleep study came back normal.  Yea!  No sleep apnea!  That was music to my ears as I just couldn’t imagine transitioning him to sleeping with a CPAP or any other kind of device.  She also said that Connor seems to be doing well enough lung wise that he doesn’t have to see her again for six months. 

I’m thankful for all the good news we received in the last month and challenged by all the questions and tasks still before us.  One day, one week, one month at a time.  Thanks for your continued prayers and good wishes!

The Sub-Culture

There’s a lot of stuff rumbling around in my head and heart lately related to being the mother of a child with special needs.  It mostly has to do with the sub-culture that is Special Needs Parenting.  Many have asked if I/we have found a support group or someone in a similar situation to talk with.  The truth is, while I do have a couple of friends who have kids with special needs and we message on Facebook sometimes, I’m leery to jump into the sub-culture.

While well intentioned and fiercely in love with their children, I have been overwhelmed, annoyed, disheartened and made to feel inferior by more than one parent of a special needs kid and their unsolicited advice.  Overwhelmed and disheartened when it seems all these moms (in my experience, it’s been moms I’ve spoken to) can talk about is their child’s latest struggle or success, therapy or doctor appointment.  I’ve been told to hold on to hope and to fight harder for my child and the services he does and will need.  I’ve been questioned about my ability to work full time outside of the home and keep up with Connor’s needs. 

Frankly, my life is crazy enough.  I haven’t been wanting to take it up a notch by entering into this kind of community.

I also think I have a fear of hearing and seeing what might be ahead of us.  I don’t think I’m in denial about Connor’s diagnosis and what that might mean for him and us, but it is quite easy to just look at the here and now.  Being around other kids with special needs and their parents scares me.  Scares me enough that I had decided not to go to the Joubert Syndrome conference this summer.  I had a physical, anxious reaction every time I thought about the conference and interacting with other JS families.

So all of this has been on my heart the last couple of months.  I’ve really wrestled with these feelings as my extroverted side has always driven me to engage in groups, meet new people and go to things that I can learn from and have fun at.  To all of a sudden feel like you want to do the exact opposite has been hard.

But I’m entering a new place with some of it, realizing that this is a community and sub-culture I must be a part of in some way so that I can be the best mom possible for Connor.  We’ve decided to FOR SURE go to the JS conference.  Brent really wants to go.  It’s in Minneapolis so we’ll be able to see friends and family and bunk up at friends’ houses for free. And we won’t be able to go in 2015 because of the ELCA Youth Gathering being the same time, so it would be four years until we have the opportunity to go again.  And while I’m still nervous and not sure, I don’t feel like I’m going to throw up every time I think about going.

I joined the Facebook group for JS Parents.  I’ll probably just lurk for a while and see what folks are talking about, but it’s a step.

I’ve also Googled a family nearby who has a daughter with JS.  She was featured in a local paper not too long ago because of her trip with Make A Wish.  Not quite ready to call yet, but I have their number and hope to make contact with them this spring.

So I’m dipping my toes into the sub-culture of Special Needs Parenting.  Curious, wanting, leery and ready to defend our family’s unique situation and decisions if need be.  I ask for your prayers as I navigate these unfamiliar waters!

Cute picture of my little Valentines just because!

Early 2013 Update

It’s been a while since I’ve hit the ol’ blog.  

Making eyes at Tink

First, let me just share that we had a fabulous time at Disney World! Clara loved meeting the characters, going on all the crazy rides, trading pins and seeing the sites.  Connor was a champ.  He got to go on several rides and flirted with all the princesses he met.  One of our favorite moments was when we got to visit Tinkerbell and her sister, Periwinkle.  It was on Clara’s “must do” list and Connor was mesmerized by the fairy sisters.  We all had such a great time and it was wonderful to get away and focus on family and fun for a few days.

Connor’s had a number of appointments at CHOP in the last week.  He had a check up with Neurology in the Neuro-Muscular clinic.   His neurology doctor has been out on maternity leave, so they hadn’t seen him since August.  She, along with the PT and OT of the clinic, were pleased with his progress.  He was quite the charmer for them and even sat unassisted for several seconds when the OT was examining him!  We also met with the geneticist.  She shared the results of Connor’s genetic testing and so far the results have come back negative.  They just started testing nine other genes for Joubert Syndrome though, so now we’ll do that test and see what the results show.

At the seating clinic trying out a new chair

After the neuro appointment we went to the seating clinic to figure out what pieces of equipment Connor needs.  We ended up ordering a stander, a seat and a bath chair.  The process of choosing was a bit overwhelming as there are so many choices and things to consider.  We had to use our “phone a friend” and draw on the expertise of our PT at one point.  I hope we made the right choices.  Unfortunately, the equipment takes three to four months to arrive so it will be a long time before Connor gets to use his new stuff!

A couple of days later, Connor had a check up with the ophthalmologist that did his surgery and has been watching his ptosis.  They redid the vision test Connor didn’t do so well on in December and this time he scored right where he should!  It’s a test that requires him to track side to side and the doctor thinks that because of his nystagmus the tech who did it last time had a hard time deciphering what was tracking and what was unwanted eye movement.  This time they had him track it up and down and he did great!  All that vision therapy is paying off!  The ophthalmologist was pleased with how his eye looks and we don’t have to see him again for a year.  We’ll continue to see the other ophthalmologist who has mainly been looking after his nystagmus and strabismus. 

Next week is a GI appointment and a repeat swallow study, so prayers and good thoughts for both of those are appreciated!

2013 Here We Come

Happy New Year’s Eve! 

Connor loves looking in the mirror.
Sometimes he'll even blow kisses to himself!

I can’t believe 2012 is almost over.  Sometimes it feels like this year has flown by and others it seems like it has drug on and on.  Definitely a year for the books though!  All sorts of things to celebrate - our first full year with the little guy, Clara completing kindergarten and loving the beginning of first grade, lots of people visiting us in Pennsylvania and a few fun family get-aways.  And this year has brought more than its shares of challenges – the death of my grandmother, Brent’s spine issue early in the spring and, of course, Connor’s diagnosis of Joubert Syndrome.   

A life changing year.  One that has brought out my greatest strengths and weaknesses.  I’m not quite ready to be thankful for the challenges laid before us, but I’m hopeful that day will come.  I know God has not given me more than I can handle in the grand scheme of things, but sometimes on a particular day or week it certainly feels like it.

Working on hand play therapies

Now we look to 2013.  If 2012 (and 2011) taught me anything, it was that you never know what will be around the next turn, so I can’t even pretend to know what these next 12 months will bring. And even though I’m pretty Type A, I’ve never done well with New Year’s Resolutions.  I feel like I make them at the peak of optimism (and usually after several days off from my job) and then disappoint myself.  Maybe if I call them hopes rather than resolutions there will be less room for disappointment :)  

So some hopes than for the Dean family in 2013…

1. Connor will sit by himself before he’s 18 months.
2. Molly will begin exercising regularly.
3. Clara will ride a bike without training wheels.
4. Brent will play softball again this summer.
5. Connor will stand with minimal support.

Seems like a fairly realistic list for the next 12 months.

Kiddos on Christmas Day

No major medical updates to report in the last two weeks.  The only change is that we no longer have to patch Connor’s eye.  The ophthalmologist wasn’t certain it was doing any good, so we’re just going to see how things progress without it.  We had a great Christmas and now are REALLY looking forward to our vacation in Florida!

Blessings to you and yours in 2013.  Thank you for keeping our family in your thoughts and prayers this past year!

Hugs, Tests, Progress and Vacation

First, I cannot blog today without saying that our family’s prayers are with the community of Newtown, Connecticut.  The whole thing makes my stomach hurt.  Today is one of those days I hug my daughter extra tight and don’t even remember all those times she’s sassy and difficult, one of those days I squeeze my little man and don’t get sad that he doesn’t hug back because he’s in my arms smiling up at me.  I'm so thankful for my children and cannot imagine what these parents whose children were killed are going through right now.



The night after his surgery



Yesterday it was one year since Connor had his eye surgery.  His surgery was to help with his ptosis (droopy eyelid).  They basically did a tuck in his eyelid so that it didn’t cover his pupil any longer.  I remember how tiny he looked on the bed as they rolled him away.  It’s quite a scary experience to turn your child over to a nurse and know the only thing you can do at that point is hope and pray for the best. Luckily, the surgery went ok and while there will be another one in the future, we’re hoping to be able to hold off for a few years.

Connor had his consult with the pulmonologist last week.  She ordered two tests – an upper GI scan and a sleep study.  We had the GI scan already and it ruled out physical abnormalities as a cause for his choking when he drinks and his snoring.  The sleep study will tell us if his oxygen levels are staying where they should be when he’s sleeping and may explain why he snores so much!

We had another appointment with the feeding team this week.  They were happy overall with the progress they saw, especially his head control and posture in the feeding seat.    The dietician is changing him over from formula to Pediasure.  It’s higher in calories and more appropriate for a one year old.  The Speech Pathologist introduced a new feeding routine to give Connor cues when the spoon is coming.  I think he gets it usually, but we’re going along with it to see if it helps.  We finally figured out an anti-reflux drug that doesn’t make him more irritated and that my insurance company will cover.  Hopefully he can stay on this one for the three months the doctor thinks it will take to see if there is any improvement.



Seems to like the stander!



Last weekend we were finally able to get Connor into his stander.  While he doesn’t like the process of being strapped into the contraption, once he’s in it he really seems to like it.  Maybe just a new angle to view life is exciting?!  He stood like this for almost 30 minutes while we read books, played with toys and danced around entertaining him.  This stander is on loan from the ARC and we have started the process of getting our own through CHOP’s seating clinic.



Both the PT and the OT are very pleased with Connor’s progress lately.  The PT found a new set of really tight muscles in his abdomen and back a couple of weeks ago and with some stretches she showed us he limbers up pretty quickly.  This makes learning to sit nice and tall much easier.  Both therapists have said how lucky we are to have Carrie, Connor’s babysitter, as a part of our lives.  She does more exercises with Connor than we are able to on a daily basis and is so attentive to his growth and needs.  He just lights up when he sees her in the morning! 



Sitting with just the Boppy for support!



And finally, the countdown has begun.  We’re going on vacation in January – Disney World here we come!  We have been thinking about going for a year, but almost cancelled when we got Connor’s diagnosis last spring.  There were and are so many unknowns, so many extra costs – how could we justify this vacation?  And then we reminded ourselves that #1 – We have two kids and cannot deny Clara the things we want for her because Connor might have medical bills.  We wanted to go back to Disney one more time while it was all still real for her. #2 – Connor’s a good traveler and will love Disney will all the bright characters, lights, smells and maybe even a ride or two.  #3 – If we stop living, having fun, going places because our child has Joubert Syndrome we are doing no one a favor.  Building memories is important for every family no matter the challenges they face.  We’ve been saving for over two years for this vacation and we’re going.  It’s going to be awesome!

Catching Up Update

Hello blogosphere…it’s been a while.

It’s been an intense fall at our house.  My work had me going pretty much constantly since early October, so there hasn't been time for much else.

But I have a moment to breathe now and thought I would share the updates from the last six weeks:

Connor & Clara celebrate his first birthday!

           Our little man is a year old.  Hard to believe we've been a family of four for more than a year now.  His birthday was awesome.  I had a work event up in New York and so we decided to make a family trip of it and go to Niagara Falls.  On his birthday, October 26, we went to Canada to see the spectacular views there.  Little Connor is a world traveler at one year old!  

      And I was fine.  Sure there were deep sighs and teary glances exchanged by Brent and I, but overall is was a happy day.  Connor’s birthday party plans were slightly snuffed by Superstorm Sandy, but we made the best of it and gathered with family and a few close friends – thankful for the gift of life, electricity and food.

Jessie & Woody on Halloween

         Clara and Connor were Jessie and Woody for Halloween.  Totally adorable.

          Connor has really been improving in the last three weeks with arm movement and reaching for toys. He actually bats at the jingle toy hanging from his car seat bar if we’re patient enough!

         We’re back to a clear helmet now.  This would be helmet #3.  He seems to tolerate it much better than the blue one and it’s far more fashionable as clear goes with everything. :)  Still haven’t heard those magical words of an end date yet, but we’re hoping he won’t have to wear it much into 2013.

Trying out the new corner chair

           There are two new instruments of torture in our house.  Our fabulous PT found us a corner chair and stander to try out.  I shouldn't say torture devices…they look quite menacing, but he actually doesn't mind his corner chair that much.   And the one time Carrie and the PT actually got him strapped into the stander, the report was that he seemed to enjoy his new view on life.  So we’re on the hunt for a different stander – one that doesn't require two grownups to get a one year old into.

Connor’s sitting and standing are improving, too.  His balance while sitting is much steadier than earlier in the fall. One of Clara’s favorite things to do with him now is roll a ball back and forth when he’s sitting in between my legs.  I still have to guide his hand to hit it back to her, but he follows the ball with his eyes and moves his hands towards it when it comes to him.

Doing so much better with standing!

While he’s no where near independent when standing, he will bear weight on his legs now for more than a minute at time.  He doesn't fuss and will look at toys or a mirror, but his favorite pass time while standing is sissy singing and dancing in front of him.

            We continue to see the feeding team at CHOP.  While his eating form has improved much, he is slowly gaining weight which is good news.  Connor also saw the Gastrointestinal doctor, Dr. Loomes, again a couple of weeks ago and I was so thankful that she took the time to hold and snuggle him during the appointment.  We are blessed to be under the care of many skilled and caring professionals, but she is the only one who holds him for more than the purpose of examining him. 

With my kiddos in New York

     Connor has become quite the little chatterbox. He makes lots of different sounds and can really make a lot of noise when he wants.  He also gives kisses now which is just the cutest thing!

     Current requests for prayers and well wishes include:

•  Good results from an upcoming Pulmonologist appointment to make sure the aspiration in his lungs is not worse than we think.
• Thanksgiving for Clara’s 7^th birthday on December 5!
• Continued improvement with his feeding form and ability.
• That December might bring some time of rest and renewal for our family.

Blessings to you!