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!

Birthday Blues and Blessings

Ready to have this baby!

Connor will be one year old next Friday.  I’ve been thinking about his birthday a lot lately.  I can’t believe it was a year ago that I was anxiously preparing for our little boy to join the family, finishing up projects and events at work and trying to get in some final Clara-Brent-Molly moments.

I think most parents get a little sad anticipating their child’s first birthday.  There’s something you give up when your child turns one – they’re no longer little babies and that’s hard.  So I’m a little sad about that aspect of it, but him turning one and the last month or so leading up to it seems to be more of a slap in the face, alerting me to where Connor is behind his peers.   Most of the time, I’m able to focus on the amazing progress that Connor has made.  But from time to time, and more so lately, I’ll see a toy commercial and how a toddler is playing with the toy and I’ll get teary.  Or I’ll see a baby sitting in a cart at a store and wonder if that will ever be my baby or if he’ll be too big to be in the front of the cart by the time he’s sitting.

I’m anxious about how I’ll feel on his birthday.  I want it to be a day of celebration and thanksgiving for how we’ve all grown in the last year, but instead I’m afraid I’ll be thinking about everything I want him to be doing.  I want him to sit in his birthday chair, dig into his cake with both hands and smear it all over his face, clap his hands when we sing happy birthday, walk around playing with whatever new toy he got.  I’m afraid I’ll cry tears of sadness and fear instead of joy.  That I won’t be able to get over this pity party I’m having on his behalf for myself.

Just a few hours old

Connor got his Joubert diagnosis a little more than six months ago and I have managed to stay hopeful and optimistic almost every day since then.  I’ve stayed strong through doctor appointments, tests, therapy sessions, good news and bad news.  But there’s just something about this birthday that I can’t shake my negative feelings from.  Maybe it’s because his birth day was such a mix of emotions?  Anticipation, joy, fear, relief, sadness and exhaustion surrounded those first hours and days in the hospital.

 I feel guilty for being such a Debbie-downer about my son’s first birthday.  I seriously thought about just trying to treat it like any other day, but I know that’s not possible.  Deep down I want to celebrate and I need to celebrate – his life, our life together and the many family, friends and medical personnel who have supported us through the last year.  So we’re having a birthday party for the little man.  I know being around others who love Connor so much will focus me on the joy of the occasion and I won’t be able to bury my head in the sand. 

Almost 12 months old

Now don’t get me wrong – I do see, appreciate and thank God for the blessings of the past year.  They are countless.  Results that could have been very bad turned out fine, continued progress in this therapies, a baby with a very cheerful disposition, a daughter who dotes on and isn’t jealous of her little brother despite all the extra attention he gets, a fabulous children’s hospital an hour away, health insurance, a job that is flexible and joyful, and many happy memories as we’ve forged on ahead with life.  So many good, good things.

Well there.  I’ve got it out of my system.  Maybe by putting these words down, I can release these feelings into the blogosphere and not be weighed down by them.  Because, in the end, I choose joy over fear.

Six Month Review

Well, we are done with the reflux medicine – at least for now.  About a week after starting it, Connor began to refuse bottles and food, sometimes only getting half of what he should each day.  The Nurse Practitioner that suggested we go on it said to cut back to once a day which we’ve been doing for a little over a week now and he still is refusing food or bottles sometimes.  He’s also started to cry a lot during meals which doesn’t make mealtime very pleasant for anyone.  I’m not sure if this is all just a coincidence or not, but I decided tonight that we’re going to take a break from the medicine and I’ll talk to the NP this week.

Change is coming with the helmet, too.  The orthotist has ordered him another new one – we’re going back to the clear helmet because she has better control over the pressure points with that one.  The blue one has been leaving a lot of marks on him and a week or so ago he had one that turned into a sore.  Poor buddy!  I was hoping he would be out of the helmet by his first birthday, but that isn’t looking like reality anymore.

Being a ham for the camera

Connor had his six month review with Early Intervention on Friday.  Everyone was so complimentary towards him and happy with his progress.  It is quite amazing how far he’s come in the last six months and really even in just the last three months.  We updated his EI goals and are hoping by his 12 month review in April he is #1 – sitting by himself, #2 – reaching for and engaging cause and effect toys, #3- improving with feeding and has moved on to table foods (Ok, so I add table food part in my head. It’s not a part of his official goal).  It seems like a lot, but if he keeps up the momentum from September I think they are reachable goals.

Current requests for prayers and good thoughts:

•           An ophthalmologist appointment on Friday that is a post-op check up from his surgery last December.  I think his eye lid is starting to droop again which probably means they will do another surgery sooner rather than later (originally they said when he was five they would have to do it again).  If he needs it, we’ll obviously do it, but I’d really hate to see my lil guy go under the knife again.
•           For  whatever is making him refuse his food and be crabby during meals to go away.
•           Our/my schedule for the next six or seven weeks is super crazy – lots of travel, meetings and events.  Need strength and patience for Brent and sanity for me as I try to balance it all.

I feel like I need to blog about Connor’s upcoming birthday.  Have to gather my thoughts a bit more though…maybe in the next week or so.

Gaining

We received some good news – Connor has gained a whole pound in one week!  I guess thickening his formula and baby food is helping! 

We’ve seen five new specialists in the last eight days.  All of them are looking for different reasons why Connor hasn’t been gaining weight like he should and helping us to teach him better form while eating baby food.  Of course, some of their advice contradicts each other and the therapists and specialists we’ve already seen so we’re doing a good amount of parental judgment as to what to try first, what to give up on and what to set aside for another time.  I’m hopeful that because he’s finally starting to gain weight some of these concerns will be behind us soon.

The nurse practitioner on the feeding team we saw thought Connor might be having some reflux issues even though he doesn’t really exhibit symptoms.  So now he’s on medicine for that twice a day.  It’s really nasty and he hates it, but I agreed to give it a try for a few weeks and see if his non-existent symptoms get better…not sure how they/we will gage that, but we’ll see!  The gastrointestinal doctor said from her point of view he looks good and the only additional thing she suggested was that he should eat more prunes. :)

Connor really seems to enjoy himself at Ms Carrie’s house (his sitter).   She has three kids of her own, so after school there are lots of people talking to and playing with him which he really loves! 

Getting so good holding his head up!

Connor is gaining ground with therapies, too.  He’s becoming a rock star at lifting his head while on his belly.  He also started sitting in a Bumbo seat with a Boppy wrapped around him for support.  (Never fear – we are smart enough to not put him in it on a table and then walk away)  Both therapists that see him weekly have commented this month that Connor is really starting to get opinions about what he likes and what he doesn’t like.  He has always been such a chill, go with it little guy and now he’s finally starting to let us know when he doesn’t want to do something.  Makes exercises and stretches a little tougher sometimes but I’m also glad he’s gaining a voice for himself.

The ever-helpful sister assisting Connor with
sitting in the Bumbo

In Clara news, she and the Tooth Fairy are communicating quite frequently these days as she has lost two teeth in the last two weeks and has three more wiggly ones.  She wrote the Tooth Fairy a note last night to include with her tooth and received a fairy size note along with her quarters this morning.  Pretty exciting stuff!  With the recent loss of two more top teeth, one of her grownup front teeth is finally poking through, so she, too, is gaining!

I Believe in You

While a part of me is bracing for the insanity that the fall will bring, the other part of me is glad August is done.  Our life is pretty scheduled and patterned.  As the primary maker of the schedule, I know what is going to happen when and usually have things planned out eight weeks in advance.  I work hard to make sure things are in place and that I have it all figured out so we don’t have too many surprises along the way. August was a topsy turvy month filled with randomness and last minute scheduling for all four of us.  Kind of hard for this Type A gal!  So I’m thankful for September and the rigidness it brings. J

Updates…

Dipping toes in the ocean

Vacation was awesome. It’s amazing what a few days away from it all can do to your family dynamics and your soul. We love the beach!

Connor’s ophthalmologist did a Teller Acuity Test for his vision.  He scored well when using both eyes but not so well when either was covered.  The doctor didn’t seem overly worried, but wants to see him in a few months in the hopes that he’s progressed.  We’re down to every other day for the eye patch now.

There is some concern that Connor isn’t gaining enough weight, so they are checking all sorts of things.  We had a visit with the EI Nutritionist to make sure Connor was getting enough calories.  She was a very nice lady, but kind of clueless when it came to babies.   I had to tell her twice he was too young for milk/dairy products.  We see the GI doctor, Speech Pathologist and Nutritionist at CHOP coming up in the next two weeks so that should give us more answers.

Smiley 10 month old

Connor had his (very late) 9 month check up.  He measured 29.5 inches and 19 pounds.  Such a tall boy!  That long torso will REALLY give him trouble as he tries to learn to sit.

August was frustrating related to OT and PT progress.  PT wise I think he’s doing ok – much better with head holding and he's giving us the smallest signs that he might be putting weight on his hands when he’s on his belly.  He seemed to slip backwards with OT stuff last month, especially with reaching out for things.  I think the crazy month just didn’t provide the consistency he needs therapy wise.  With vacation schedules for us and his therapists and the revolving door of care givers, there were many days when he was just along for the ride of whatever the day brought.  So my hope is that September will get us back on track therapy wise!

Connor looking not too thrilled about the new helmet

Little man is now sporting a blue cranium helmet.  It’s bulkier and heavier than his first one, but will make the head reshaping go a little faster.  Hopefully he’ll be done with it by his first birthday.

And our final update – Connor has a new sitter.  I am so thankful!!!  A wonderful and kind woman we know from church agreed to watch him.  It’s just the perfect ending to a very stressful situation.  She is excited and appropriately overwhelmed to have Connor and I know she will be a great addition to his life.  Halleluiah!

I continue to be so thankful for all of you.  Those reading these words, praying along with us, sending us well wishes and advice.  And I continue to be thankful for and amazed by my beautiful children.  Tonight Clara and I were doing therapy stuff with Connor.  He was lying on his back and she was holding his favorite “cause and effect” toy right in front of him.  We took his hand and hit the toy a few times so it would sing and light up.  Then we waited for him to do it, encouraging him with smiles and high pitched voices.  And then she started singing a little made up song to him…”I believe in you, I believe in you.  You can touch it.  Don’t be scared.  We want you to be smart.  Touch it and then you’ll be smart.  I believe in you, I believe in you.” 

Love you!

He didn’t reach out and touch his toy (probably due to my audible crying by that point), but I was again reminded of how simple and awesome the love for this little boy can be and that sometimes, I make it (and life) more complicated than it needs to be. Your mama believes in you, too, Connor!

Warning - Whiney Post!

Last week was just one of those weeks.  Really long, busy and overwhelming.  So I feel like it deserves a blog of its own…

Miss Molly & Connor last week

Monday – Busy day at the office with a dark cloud hanging out above my head for most of it – tonight we were going to have to say “good-bye” to Connor’s beloved babysitter, Molly.  I picked Connor up that night, tried to snap a cute pic of the two of them together and managed to leave without crying.  We adored Molly and knew Connor was well taken care of when he was at her house.  So it’s sad (but we are happy for her and her new vocational adventure!) and it’s overwhelming because we still don’t have a child care plan for Connor.  But some leads are coming in from friends and colleagues and so far I’ve been able to remain hopeful!

Tuesday – Working from my home office stresses me out quite a lot of the time.  Connor was home with me which just complicates matters more as most of the day I feel like I’m either being a slacker employee or a slacker mom.  All the things I should be getting done today…all the therapies and exercises I should be doing with Connor.  The afternoon brought a PT session for Connor which was good.  The PT was happy with the progress little man made while at Gramma’s and we had a really nice chat about life.  I’m so thankful for Connor’s therapists…they are such kind and wise women.  After PT Connor and I had to go get Clara as she had an emergency dentist appointment for a bruised gum.  Turned out it was nothing to worry about, but still.

Wednesday – Drove to CHOP in the morning for a Neurology appointment.  After waiting in the room for an hour, the doctor finally came in, got all the updates from the last three months and examined Connor…which all took another hour.  She recommended three new consultants to address various concerns and asked me to stick around for a little bit so the CHOP OT could see Connor.  The OT came in, took history (again) and examined Connor (again).  She and neurologist concurred that Connor needs more OT and so recommended he go to a place which is actually only 10 minutes from our house.  We have now been at CHOP for three hours, it’s 2:00 and neither Connor or I have had lunch.  So we head to cafeteria where we both eat and then Connor has a meltdown.  I guess if one of us was going to have one, it is far more socially acceptable for him to scream and cry in public.  Although at CHOP, I think it would have been ok for either of us to do it.

Back in the car for an hour to the new pediatrician’s office to get her to sign paperwork for the orthotist.  I was going to have her sign it at Connor’s 9 month check up, but I had to reschedule that so we could see the Neurologist and couldn’t get another appointment with the pediatrician until August 21.  Quite frustrated with that seeing as though he needs shots and there are things I want to talk to her about that aren’t urgent enough for a sick visit.

Thursday – Bring your baby to work day.  While this, too, tends to stress me out it wasn’t too bad due to my colleagues’ excitement in seeing Connor again.  They all swooned over him and he rather enjoyed it, smiling and babbling appropriately.  Thankful for colleagues who journey with us and are tolerant of baby noises during the work day.  Managed to get a good bit of work done and then headed home.

After dinner I had to scrub the bathroom.  I hate that job.  I hate the smell of the cleaner and I hate how no matter how hard you try, you can never get the shower clean.  I usually manage to pawn it off on Brent as he doesn’t have a sense of smell, but he managed to ignore my hints for long enough that I just did it.  Luckily, Clara thinks cleaning the shower is great fun so she helped me for a while.  I figured it was “Earth friendly” cleaner so it wasn’t going to hurt her either.  I know everyone has to clean their bathroom (or pay for someone else to do it), so you’re probably rolling your eyes and thinking “suck it up, lady” but I’m not going to.  I hate that job and will always complain when I have to do it. :)

Friday – In the car again, this time for a helmet appointment.  Connor got his head rescanned as he’s getting a new helmet. 

Called to make appointments for the new consults only to be told the next appointment isn’t for five weeks.  Now this isn’t surprising, but it just urked me.  And when I called the new OT place by us I was told they weren’t accepting new OT patients, but I could be added to the long wait list.  My other option for the additional OT is to drive to the CHOP outpatient clinic in King of Prussia, about 30 minutes away.  Not sure that is doable once a week as the craziness of my fall schedule kicks into high gear in two weeks.

Realized I'm lacking in pix with Brent, so here's one
of Daddy & Connor together watching the Olympics

So yeah…it was just one of those weeks and I wanted to whine about it.  But I’m feeling ok now. This week is already better  and on Sunday we leave for a few days at the beach which means next week will be great!

In happy news, I’ve learned the Joubert Syndrome & Related Disorders Foundation’s conference is going to be in Minneapolis next summer.  I’m hoping at least Connor and I will be able to go.  I think it will be good to connect with other JS families, hear from the doctors and other presenters and spend some time with Minneapolis friends.

Thanks for reading this whiney post.
I have a page from a phrase-a-day calendar on the bulletin board above my desk that reads "Mañana sera un dia mejor" (Tomorrow will be a better day).  A good thing to remember when a day or week feels like it's caving in on you.  Thank you, God, for rainbows and promises!

Back At It

Connor and Clara at Gramma's

Clara and Connor had a wonderful time at my mom’s house for their two week stint at Camp Gramma.  Clara worked her way through the list of 17 things she wanted to do in North Dakota (I think they got almost all of them done!).  Connor was mostly along for the ride - loving all the attention he got from sissy and Gramma, doing his exercises every day and battling a cold for several days.  Brent and I had an exhausting and amazing week in New Orleans for the ELCA Youth Gathering.  So many memories and God-sightings.

Big changes ahead for us as the woman who has taken care of Connor since my maternity leave is going back to work full time.  Connor adores Molly and she and her family have become dear to us.  We are still trying to figure out what to do with the little man during the day, but have some leads and are confident a loving person will be put in our path.

Connor’s had two major tests since my last post.  On July 9^th he saw a neuro-muscular orthopedist and had x-rays done on his spine to rule out issues that would cause the popping we’ve heard in his neck.  Thankfully the x-rays came back normal and the doctor said he wouldn’t worry about the noises.  Full steam ahead with physical therapy!

The other test was on Friday (we’d been back in the state for 36 hours, so of course it was time to go to CHOP!).  This one was a swallow test because he has been choking and coughing a good bit while swallowing his formula and drool.  They gave him Barium liquid in a bottle and watched on an x-ray video as he drank it.  What they saw is that he is aspirating a little when he swallows.  The speech pathologist that went over things with me seemed a little surprised he hadn’t had respiratory issues but figured he must doing ok.  She said he did better with thicker liquid so now we are thickening his formula with cereal in hopes that will stop some of the choking. 

And so it’s back to the daily grind for the Dean family.  Brent and I got right back to work, Clara is off to YMCA camp next week and Connor is being cute, doing exercises and going to the doctor.  Current prayer requests are for Connor’s eating techniques to improve, for a sitter to be found and for continued progress with his hands’ sensory issues.

P.S.  Had to include this pic from Connor's first time at the beach.  I thought he'd freak out from the texture of the sand, but he seemed to enjoy it!

Unconditional

Connor loves bouncing on his therapy ball!

Little man continues to make progress with his therapies.  His is holding his head up for longer periods of time now and we think has made a few efforts to bat at toys with his hands.  He tolerates the eye patch and helmet still although in this hot weather he doesn’t have the helmet on for as long during the day.  Will probably mean he has to wear it past the three months the orthotist guessed at the start, but that’s ok.

While always a content, good baby, Connor is turning into a smiley baby.  Before, we would have to work pretty hard to get a smile out of him, but now he finds the strangest things funny and turns on the charm with his therapists (I think he’s trying to get out of the exercises he doesn’t like).  Connor’s also starting to acknowledge people he knows.  It’s so amazing to finally have your baby smile at you when he sees your face in the morning or turn his head when he hears your voice.  I’ve been waiting for that for many months.

We were at the orthotist (helmet lady) the other day and there were two other babies there.   I told Clara I thought they were about Connor’s age.  Almost right away, she commented on how well they held their heads up and then insisted they were older than Connor.  We asked their mom and she said they were eight months old, just a week younger than Connor.  Then about ten minutes later when the mom put the little girl baby down to play with Clara, Clara said, “She can sit all by herself?!  Connor can’t do that!”  The mom sweetly smiled at her and said, “He will soon”.   We don’t really have close interaction with babies Connor’s age so this was one of the first times she’s interacted with another baby and noticed the differences.

Kisses from Sissy

Brent and I have been honest with Clara about Connor, but have also chosen not to tell her everything.  We answer questions when she has them and explain the obvious things (his nystagmus, eye patch, helmet) to her right away so she can respond when people ask about it.  But we haven’t told her about the internal/brain things and what all of that might mean.  She’s a worrier and I don’t want to stress her out.  It’s for selfish reasons, too.  I feel like she’s really the only one in Connor’s life who doesn’t look at him and wonder “Will he ever…”.  I would like to keep it that way for as long as possible.  She thinks he’s perfect (and, I know, she will even when she knows more) and there’s something unconditional about her relationship with him that not even I can give him.  Not sure why I feel so strongly about this…even as I write now, I tear up about it.

But after this interaction with the girl baby, I know the questions are coming soon – “Why can’t Connor do what those babies can?”  I pray for the right words when the time comes.

Next week the kids are off to “Camp Gramma” – two weeks in North Dakota with my mom while I head to New Orleans for the ELCA Youth Gathering.  Brent is joining me there for part of the time to lead our synod’s youth worship band.  I'll be away from them for eight days, but am not worried as I know they are in good hands!

Stay cool! :)

Plodding Along

New eye patch

Today Connor had an ophthalmology appointment at CHOP and his doctor said it was time to try an eye patch to strengthen his left eye.  The last couple of months, we’ve noticed his left eye drifting up and in pretty significantly. So now Connor is sporting another new apparatus for a few hours each day.

Lifting and holding his head up!

We’re currently about 36 hours into a mom-imposed helmet ban as I think he was getting a pressure sore in one spot and possibly bruising on another.  We’ll see what the orthotist says when I talk to her tomorrow. 

Connor continues to improve in many areas thanks to his therapies.  It’s slow progress…very slow.  But we try to stay encouraged that he’s moving in the right direction for the most part.  He’s doing much better holding his head up and steady and seems more interested in lifting his head when lying down.

One big frustration for me in the last two weeks is Connor’s eating.  He’s always liked his bottle and started on cereal and baby food at a normal age.  While he doesn’t have a problem getting food down, he’s doing it wrong.  He sucks the baby food down like he’s sucking on a bottle – and keeps his mouth open the whole time.  Gross and messy.  The OT is trying to correct it, but the techniques she’s given us to try don’t seem to be working.

Current prayer requests and good thoughts wishes include an appointment in two weeks with a new specialist (neuro muscular orthopedist) to make sure the popping in Connor’s neck is nothing to worry about, continued positive responses to physical therapy, progress with his feeding and that the patch does the trick to strengthen his left eye.

I Do My Own Stunts

“He’s got his crash helmet on” chuckled the parking garage attendant as he made the genius observation that my baby was indeed wearing a helmet that, yes, resembles a crash helmet.  Part of me wished I could burst into tears and make up a story that contains some horrible reason why he was forced to wear such a contraption, but I did the polite thing and laughed along.

Sporting the new cranium helmet

So yes, the most visible new addition to Connor’s journey is his cranium helmet.  Most likely due to his desire/need since birth to turn his head to the left, his head became “vaulted” on the left side.  He will have to wear the helmet for about four months to squish his head into the appropriate shape.  His misshapenness was so severe that his ears were actually offset from each other by about half an ear.  Connor is tolerating the helmet quite well.  He wears it 23 hours a day unless it is super hot and/or humid out and then I cannot bear to make him wear it all day.

Most people are very sweet and almost hesitant when asking or speaking about the helmet.  We’ve had other parents whose child has worn a helmet come up, share a little of their story and then, without fail, show off their kid’s now basketball round head.  Sometimes I go into why his helmet wearing is a little different than most (most kids wear the helmet because of a flat back of the head), but most of the time I just smile and nod.

Other medical updates in the last few weeks:

• Connor had an ultrasound of his abdomen as liver and kidney function issues often accompany Joubert Syndrome.  For the first time in what seems like forever we received good news - his liver and kidney look normal!
• Blood work is being done for genetic testing.  There are two ways JS happens - either genetically or spontaneously.  I’m hoping for Connor’s to be the spontaneous form…if it genetic that means more testing for the rest of us and could make family planning more difficult for Clara and others in our family.  And holy cow genetic testing is expensive.  Immediately did a “Thank you Lord for health insurance and medical assistance” when I opened that bill!  I’m not sure how families without health insurance or who can’t navigate the system have a special needs child - it is so expensive and daunting.



Connor after Physical Therapy

• We are now being visited by three lovely therapists - weekly Occupational and Physical Therapies and Vision Therapy every other week.  We are already seeing progress - Connor is doing MUCH better at holding his head up and a few days ago he lifted his head while being held belly down.  Yup - Brent and I both got teary eyed at that one as lifting his head while on his belly was one huge milestone we noticed early on Connor wasn’t meeting.

The biggest adjustment these last few weeks has been trying to figure out how all these ongoing therapy and doctor appointments fit into our already jam packed and very calendared lives.  So far, we’ve been able to make it work this spring and it looks like we’ll make it through the summer just fine.  I’m nervous for fall once school starts again, my job gets “fall crazy” and the possibility of Brent starting to travel for work looms. It’s just a lot.  I am so thankful that Connor has a wonderful woman (ok, really a whole additional family) to take care of him while we’re at work.  Molly (yup, that’s her name, too) is God-sent and I’m reminded of that every time she asks about an appointment or agrees to have a therapist come into her home to do a session.  God has given us what we need to do this so far and so in the moments that I feel like it’s all too much I need to remember that what is needed will continue to be provided.

Thanks for your love, prayers, well wishes, offers of help, story sharing, advice and reading.  We appreciate it! :)

Starting Out

One year and six weeks ago Brent and I got the surprise of our lives.  I had been sick for three weeks.  Jokingly, several people had asked if I was pregnant.  I laughed this off because it was not possible.  Not physically possible for me to get pregnant naturally.  But that question wouldn't get out of my head, so we swung by CVS and bought a pregnancy test.  While Brent was giving Clara her shower, I took the test.  To my amazement, there were the two blue lines.  Clear as day.  I screamed.  Brent came running.  I showed him the stick and we were both speechless.  Impossible.  Unbelievable.  Miracle.

Fast forward to October 26, 2011.  Our little man comes into the world.  I was recovering from the C-Section and didn't even know our baby had been rushed to the NICU with a pneumothorax (hole in the lung).  And so the medical carnival had begun.

At 8 days old, Connor came home.  In the hospital we noticed he had rapid eye movements and a droopy eyelid, and so we set up an appointment with a CHOP (Children's Hospital of Philadelphia) pediatric ophthalmologist. He said Connor had nystagmus (eye movements) and ptosis (eyelid droop).  There wasn't anything we could do for the eye movements, but the ptosis would require surgery sooner than later.  At seven weeks, Connor got an eye lid "tuck" so his eye would be open and his visual development would not be affected.  The surgery was a success (not perfect, but functional).  Additional doctor visits and tests could continue for his eye issues.

In the last two months we (and the doctors) have noticed developmental delays in Connor.  He didn’t roll over until he was five months old, he cannot sit up, he doesn’t reach for things or grasp toys well. The muscles in his shoulders and neck were very tight - torticollis.  We decided to enroll in our county’s early intervention program and Connor qualified for physical and visual therapy.  At about the same time, our pediatric ophthalmologist suggested that Connor’s nystagmus (his shaking eye movements) are the result  of something more and not a standalone issue as we have been thinking.  He recommended that we see a neurologist and get a brain MRI done.  We saw a pediatric neurologist at the Children’s Hospital of Philadelphia (CHOP) and Connor had the MRI on April 10.  The test showed abnormalities in the brain.  

Connor has been diagnosed with Joubert Syndrome http://jsrdf.org/ It is a rare genetic disorder in which the part of the brain called the cerebellar vermis (think cerebellum) is underdeveloped or missing completely.  In Connor’s case, his is smaller than usual.  A long and varied list of symptoms come with Joubert Syndrome and the severity ranges greatly (much like there is a spectrum that children with autism fall on).We don’t know where Connor will fall on the spectrum of JS.  There is more testing in the near future to learn as much as we can about his situation, but in reality a lot of it is wait and see.  We are confident in the care we are receiving through CHOP and are so grateful that such a fabulous facility is less than an hour from our home.

As you can imagine, this is quite a lot to digest as parents.  We are doing ok.  Some moments are better than others.  The unknown is hard.  We find comfort and strength in family, friends, your prayers and love.  Connor is a beautiful, happy baby and we remain hopeful that he will grow into a strong, healthy boy and man.  But we are realistic that that process for him will be more difficult and limited than for other children.  We thank God for his life and presence in our family. 

And so, I'm blogging.  I'm blogging because we want and need to keep our friends and family updated and we don't have the physical or emotional capacity to do it individually.  I'm blogging because writing is therapeutic.  I'm blogging because I'm terrified and overwhelmed in my role as a mother.  I'm blogging because we have a miracle on our hands and I want to share him with the world.  I'm blogging because I hope it helps us on this journey and just maybe will help someone else on theirs.

So that's where we're at.  I'm not committing to writing daily or weekly or monthly.  Just when I want to. :)  Thank you for praying, laughing, crying and journeying with us.