The Little Things

Frosting Face

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

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

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

First time in a restaurant highchair

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

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

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

Bonus pic of these cuties at the park this fall!

Sooooooo Big!

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

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

Getting fitted for his positioning chair at CHOP

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

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

Playing in his new stander!

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

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

Yes, I Bit My Tongue

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

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

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

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

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

September 2013

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

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

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

September Updates

A few quick Connor updates for you…

Daytime hand splints

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

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

Enjoying some beach time

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

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

Happy birthday, Miss Carrie

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

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

Family pictures September 2013

Special Kids

Doing therapy with her baby

I took this picture of Clara a few days ago and have been thinking about it a lot since then.    She was getting

ready to play baby dolls and said, “Let’s pretend that this baby has problems like Connor and that she needs help doing stuff.”   I still get this rush of emotions when I think about it – sad that she has this reality in her life, happy that she is just as loving to her baby with problems as all the others and proud that she is so engaged in Connor’s life that she knows what that baby needs!

Clara is usually in charge of saying our table prayer at dinner.  It most often goes something like this – “Dear God, thanks for our food and everything we have.  Please let Lola and Art have a baby or babies and let Tammy and Chris have good baby twin girls.  Amen.”  Now Brent and I know what her prayer means, but recently someone was with us and asked Clara what “good baby twin girls” means.  She replied, “Well they are having twin girls and I don’t want them to have problems…like Connor.”

I know that all of this conversation, prayer and play is really just her working things out in her mind and, honestly, I think she does a pretty good job of it.  But it creates such polarizing emotions in me that I sometimes don’t know whether to cry or smile.  Clara knows that Connor has “problems” and that his life will be different and harder because of them.   She also says frequently (ok, all the time) that she loves her little bro and is so glad he’s in our family and that she “doesn’t care if he has problems.”

Riding in the car cart at the grocery store

I posted that picture on Instagram and someone commented, “Every time I see a picture you post of her, I get more and more excited to see all the great things she is going to do in life.  She is SUCH a special little girl.”  I hold that comment and those like it very close to my heart.  My special girl for my special boy.

And now a few updates on said boy:

We’re still waiting for Connor’s equipment.  #*%!@ pretty much sums that up.

We’ll likely soon be using a Spio vest for him to help with posture.  Because he has such low muscle tone he sits very hunched over and that’s not good, so this (torture) device will help straighten him up.  Hopefully we don’t have to wait seven months for it to come.

Connor had a visit to the feeding team yesterday and while those appointments continue to be long and overwhelming I don’t cry from exhaustion anymore when we leave.  Lots of new recommendations again at this appointment including an increase in his Pediasure since he hasn’t gained weight in 10 weeks and the chance that insurance might cover it!  Yeah!  At about $4 a day for just the Pediasure, it can really add up.

Connor puckering up to give kisses

 Connor is also going to get an augmentative communication evaluation to see how best we can help him learn to communicate.  His Speech Therapist is working on this, too, but more ideas never hurt.   He has a few words that he’ll consistently say: daddy, dog, ba (for bottle), mo (for more), bu (for book), ba (for ball) and sometimes ma-ma.  And then just lots of babbling.

The OT that’s a part of the Feeding Team still thinks that Connor needs hand splits.  Since the little sensory input bands they gave us a couple of months ago aren’t really doing anything, she’s going to fit him for something bigger.  She said he might just have to wear them at night which would be great.

Current requests for prayers and good wishes – for Connor’s equipment to come soon, for him to start biting/munching on things so we can start moving him to solid foods, for his continued growth in strength and balance, for him to start grasping and holding on to things and for our family to be strengthened and renewed as we enjoy a few days at the beach next week!

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Joubert Conference - Part 2

Saturday – day four.  More practical workshops in the morning. Our first choice, Speech Apraxia, was cancelled because the leader never showed up, so we had to go to Dealing with the Stress of a Special Needs Child.  The gist of it was slow down, take time for yourself, exercise, breathe.  Well duh.  She did give a disclaimer that none of this is easy, but geesh.  I guess it was good to hear though.  The reality is that a kid with special needs does bring more or at least different stress to your life and it’s good to hear a reminder now and then to keep things in check.  Keep the priorties the priorities.  While neither Brent or I are good about taking time for ourselves or exercising, I feel like we’re doing a pretty good job keeping the first things first for our familes.  But needless to say, it’s a challenge.

We then went to another small group for parents with JS kids under six.  There was some great conversation and idea sharing.  It was neat to hear that several other families and kids have joys and struggles similar to ours and Connor’s.  Our other small group that day was around sensory processing.  The sharing wasn’t as rich as it could have been, but we did learn that other kids have sensory issues specifically around clapping and the song “Happy Birthday”.  No new ideas on how to deal with those issues, but it’s nice to know we aren’t alone.

And I think that was really the greatest benefit of the conference.  Even if I find it hard to face the realities of Connor’s syndrome and what may be down the road for us, I have now met others who are on a similar journey.  And when I want to, I know I can reach out to those we met or those who are in the Facebook group and they will be there with an idea for a current issue or just a kind, encouraging word.

Saturday night brought the much anticipated banquet and dance.  Clara had packed her fancy dancing dress

Clara let me take a picture with her date
for the dance.

and was really looking forward to participating the evening.  My sister also got to come for the festivities.  We had a lovely dinner, heard from the new President of the foundation, bid on a few items at the silent auction and then the dance began!  Clara started dancing right at the table and Connor started bopping along with her.  He squealed and bounced and laughed at all her crazy moves.  If you’re on Facebook, check out the super cute video on my page.  That was the third time I cried at the conference – simply out of love for my adorable children and the very special way they connect.  And then we all hit the dance floor.  It was a cool experience – dancing around with all the other parents and kids – and a perfect way to end the conference.

So overall, the conference was good.  While I didn’t learn as much new information or as many tips and tricks as I had hoped, I’m going to chalk that up to the amount we’ve read about JS in the last 15 months, the excellent care we receive at CHOP and our amazing therapists.  The next conference is in Chicago in July 2015.   I likely won’t be able to go because of the ELCA Youth Gathering, but Brent and Connor may go.  We are so thankful for the JSRD Foundation that values not only supporting and sharing the research that is being done around Joubert Syndrome, but also values gathering people affected by JS for learning and support.

Connor has always loved his bottle and now he can
hold it himself!

One quick non-conference fun thing to share with you – over the last few weeks Connor has finally started to hold his own bottle!  Such a big step as this is really the first thing he has held or wrapped his hands around.  We’re hoping for a rattle or toy next!

I also found out that while one piece of Connor's equipment is on back order, the other two are quite possibly just sitting in a room somewhere and the person at the medical supplier who can tell me where they are and when we can have them seems to not like to call people back  Pray for my patience and good will towards other humans!!