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!