Monday, December 14, 2015

Loving the girls!

Our girls are the sweetest on the planet.

Tonight, I put Jessica to bed - she was beside me whimpering. I asked 'what's wrong bug?'  She said, "I want a baby sister".  I explained that we have Alexis and Jessica and they were awesome.  Then she says, "What if me and Alexis were twins!"  I said "oh that'd just be silly! You are almost twins, practically!"  Then we got distracted by talking about how Alexis would always be just 1 year older than Jessica.

On any other day and time, this conversation would leave my mind quickly. But it didn't tonight because tomorrow is the 10 year anniversary that we found out that Alexis' twin, Kaitlyn, had died.  Probably similar weather 10 years ago - I don't remember it being snowy - just cold and wet.  I remember because from the back of the ambulance, you only get to see the traffic behind you and the distortion of their headlights as go down the road.  

We have the sweetest girls because no matter what scars Mom and Dad carry around, they are always happy and content with everything.  We aren't without struggles, but in the "for real" - we have it good.  The struggles we have might bring us down, might trip us up, and may cause us to dream up new plans.  But from it all, I am grateful. Sweet kids, happy house, busy life and new chapters.  Alexis is amazes us everyday - she is getting so strong and doing so well. Here's a basketball video from last week: 

Evidently she did like 15 in a row until the camera came out.  Silly goose!  Matt filmed another one of her tonight - I'll try to get that one posted soon.

And then Jessica's sweet piano concert.  You might be able to tell when she had to look back at her music to find the next note (she had it memorized until that point).  Love her.  She is so proud of herself.  Yes, we can work on the performance - but we won't change the performance (if you know what I mean).  

Happy Holidays to you all!  Give your families and friends extra hugs this week - we all need them!

Friday, November 6, 2015

Home really is BEST MEDICINE

We were discharged yesterday around 11:30am.  We got home and Alexis settled back into her normal recovery mode.  She played with Piano, she played with toys.  She contented herself to roll on the floor of the living room when those two things exhausted her.  She visited with her afternoon PCA.  

She took a bath, and then fast asleep at 6pm.  At the hospital on Wednesday, she had slept hard when they gave her morphine (one of the things she is allergic too - a subject for another day).  And then she woke up hungry and was awake from 10pm-midnight.  Then she woke up Thursday at 6:30am.  That's really not Alexis' typical sleep cycle.  So I wasn't surprised when she fell fast asleep at 6pm, in the comfort of her own bed.

Especially because I was right behind her!  I fell asleep at 8pm.  Of course, I'm now awake because going to bed at 8pm for me is a rare treat!  But to give the body 6 hours of continuous sleep after being in the ICU the night before - I already feel like a new woman.  And the best part, once I go back to sleep in one hour (or so)--- my body will think that's a nap.  My body loves naps.  

Wanted to give you all an update of where we are.  Alexis is out of school today to give her another day of rolling around and playing around.  Yesterday she still had moments where her nose would drain blood - I didn't figure her school, her teachers or her classmates would consider that a 'perk'.  They have excellent nursing staff, but I'm sure it's not a great day for Alexis just to sit in the medical area. So she will have another day at home to relax - then the weekend - then back to school on Monday.


Wednesday, November 4, 2015

Today's Work

Alexis dragged both parents in for a marathon waiting room stent.  If we were athletic (ok, restatement - if I were athletic), we could have finished the Boston Marathon in the amount of time we've been in the waiting room.

We're here at Boston Children's Hospital for Surgery #??  I don't remember.  We haven't been here for Surgery for Alexis in 5 years.  I had almost forgotten how much fun it is.  Well, it's fun because we have some of the best people in the world looking after Alexis.  It's not so much fun that well - surgery just takes a long time.

And we don't do things easy - if Alexis is going under general anesthesia then we're going to have everyone who is anyone look in at her.

First up was ENT to clean out EARS and ear wax - so that Audiologist could get an ABR.  The ABR (hearing test while Alexis is asleep) showed significant improvement in Alexis' hearing on the right side.  This is fabulous news - it is almost 'good enough' hearing in the high frequencies for Alexis to hear without hearing aids.  Very curious!  But really great news.  Even the audiologist had to check and recheck the results she was seeing.  

Next the ENT got back to the Choanal Atresia surgery - removing the blockage that prevents her right nostril from being patent (Passing air through as a normal nostril does).  If you want to know what Alexis has been doing all of her life, push on your right nostril and hold it there.  Yeah, no air passes - that's what she had.  So he opened that up and then he called for a discussion with us.  He said "Catherine, we really need to take out her huge adenoids".  I said, in my normal-can't-be-serious-about-anything, "Take out anything you need, but please don't take out brain cells"  He confirmed because he's a great guy, "I promise to stop before the brain."  Great guy!  We got to talk to him already.

The last person working on Alexis - Dentistry - they were going to do X-rays, cleaning, fluoride treatment and THEN extractions of the front baby teeth that she grinds.  So hopefully she will not be in too much pain.  Evidently we'll 'luckily' get to keep her baby teeth.  And the nurses told me we gotta get ready for the tooth fairy!!!!

So here's a photo of Alexis 'relaxing' in the pre-op holding area.  She was pretty chill, but then again, she's always pretty chill.  The BCH music therapist stopped by to play before she went back - but Alexis was more focused on the fact that we had skipped several meals at that point.  Grumpy Girl.

Hope this update makes you all happy.  Take care!  We'll be in overnight!
Almost Happy!

Grumpy about no Food.

Additional update:  they extracted 8 baby teeth!!!

Thursday, October 22, 2015

Alexis' Visit to Duke for Undiagnosed Diseases Network!

10 years ago this week, I was hospitalized for dehydration in my first pregnancy – I was expecting twins.  We didn’t think much at all about the dehydration and we just imagined I’d get some fluids and go back our normal work and doctor appointment schedule.

Things were different starting at 20 weeks, when they noticed that Alexis’ neck was abnormal, that her heart maybe had a defect of some sort.  We did amnio and then scheduled our follow-up for a fetal echo and to meet our first cardiologist.  Amnio didn’t reveal anything and the echo didn’t show anything abnormal. 

Alexis on the airplane!
When Kaitlyn died sometime between 24 and 29 weeks, I was put on mandatory bed rest and we got to do every three day visits to Boston.  It was then we were very thankful to be in Boston. 
Alexis ‘stayed put’ and she was delivered at 37 weeks.  I’ve chatted about all of these things a lot this week – meeting with doctors at Duke for the first time.  Alexis has seen specialists in genetics, neurology, orthopedics, GI, eye, dentistry and kidney areas.  Some of them know our Boston doctors – which is reassuring.  Some of them know really well what Alexis is going to tolerate and what Alexis is not going to tolerate.  Some of them even know when to tell she’s DONE and some of them think she can push through and cooperate with them.

We have done a lot of waiting.  Hands down, Alexis is much more patient than I am.  She’s a role model for entertaining herself and being flexible.  Mom isn’t so much.  In fact, Alexis deserves a real vacation after this – and I will remember that no matter how fun it is to spend hospital time – compressing it into 1 week is like a full-on marathon. 
Monday started with genetics – we talked for 5 hours.  I would like to think some of that could have been shortened, but I don’t know how to get around it any other way.  They asked about the reports we had provided from Boston Children’s Hospital.  They asked about details on Jessica.

Alexis waiting for Full Body X-Ray
Full Body X-Ray Brought to you by PHILIPS.
Then we went to x-ray for full-body x-ray.  I think we took 18 different x-rays – to get her full body.  I sure hope they share those back to BCH so that we don’t have to do another series of those in a long time.  Between those x-rays and CT scan, I’m thinking Alexis is full of radiation for the year!!!!

After x-rays, we went to orthopedics.  Alexis demonstrated walking and spinning in a chair.  She was in a great mood because they had one of her favorite Elmo-Cookie toys --- it was awesome to see her ‘old friend’ – it’s one of the toys we don’t have any more.  Orthopedics said she looked good and they were impressed with everything she was able to do.  They were a little concerned about her tight hamstrings and her crouched walking and standing position.  We were done, it was a full day and we were allowed to go back to the hotel to recoup and regroup for Tuesday.

Tuesday started with a bang – we had to get blood drawn.  Because this is a ‘whole family’ study, they took blood from me and Alexis.  Alexis got to go first – had to stick her twice and she was very grumpy and didn’t want to give a whole lot of blood at all.

Alexis waiting for GI
Then we went to GI – we talked about her episodes that she used to have – including retching and not being able to tolerate her g-tube formula.  We have been ‘treating’ those with probiotics and she doesn’t seem to have GI issues as long as she stays on her probiotics.  We talked a bit about Jessica and her GI intolerances.
When we met with Neurology, he had lots of questions about her brain studies – CT / MRI / sleep studies / EEGs.  Well, that’s a long list.  We have gone to BCH for different neurologists, but we don’t regularly get followed by one.  We do our sleep studies with Pulmonary or ENT, but there is a lot of information on the sleep studies.  We talked a while about the ‘central sleep apnea’ that Alexis had when she was about 2 months old that we treated with caffeine until she was about 1 year old.  It stumped the Doctor (like us) as to why Alexis would have developed central sleep apnea after not having issues when she was first in the NICU.

Alexis Chillaxing on Mom at Dentistry!
That day was short so we got a chance to visit with friends that night.  On Wednesday, we had early start with dentistry – she was fabulous.  She talked about techniques and support for Alexis’ in tooth brushing and flossing.  She really understood what Alexis was going to be able to tolerate and what she was getting grumpy about.  She talked a lot about when Alexis might get her front teeth and strategies about potentially pulling some teeth to give her mouth a little bit of space.
Alexis waiting at Nephrology!  Happy!
After dentistry, we had a kidney ultrasound.  Alexis enjoyed that testing the most.  She got to lie on the table and have someone else do all of the work.   

Then we went to Nephrology – we got a chance to talk about the medications we started in February 2007 and discontinued in August 2010 for Alexis’ pseudohypoaldosteronism type II.  Well goodness me, if I had known we were going to cover all of these indepth questions – I should have studied!  It’s good that I’m good with dates and that I remember most of this – but remembering the names of the drugs and the specifics of discontinuing them…. Well, let’s just say it’s a slow conversation.  Alexis was not a fan of the urine cath that they did after that appointment.  And even less of a fan of the blood draw after that – she even threw her favorite toy.  It was a toy we had as a hand-me-down from my sister – and my 21 yr old nephew used it.  So it cracked and Alexis looks at it now like “well, how come it broke, Mom?”  Hopefully we can do adequate surgery on the toy when we get home.
After that, we were done for the day.  Totally done she said.

Thursday started with the eyes -- seeing folks at the Duke Eye Center.  We saw an optician who told us that Teller Cards aren’t used to diagnose vision in kids after age 2.  She asked if Alexis would talk and then asked if Alexis would name the letters and then asked if Alexis would match photos….. I said no to all of the questions and then she dilated Alexis’ eyes and sent us off for photos of Alexis’ retinas.  I should have just said “no” especially since we tried for 30mins of fussing and fighting to get photos of her retinas.  She had to be able to hold her chin in one of those eye doctor chin things – then they needed to move a camera in and out to get the right angle for the photo.  Alexis did not cooperate.  At all.  She was done after the first five minutes L  They did manage to get the retina photographed of the left eye but she was adamant, no paparazzi of her right eye.  

Then, we were sent back to the original waiting room – and the ‘Fellow’ came out.  Keep in mind, Alexis knows eye doctors need to see her eyes and her reaction to having her eyes dilated is to just keep her eyes shut.  Especially when they want to shine bright lights into them --- She’s a good sport, but this was starting to get on her last nerve.  The fellow poked around then finally the eye doctor came in.  And sure enough Alexis was increasingly more and more rude to them all.  She didn’t mean to be, but she was really upset with them about the whole series of events. 

Now we are eating lunch and taking a break before our 1:30pm wrap-up with Genetics team.  It’s been a tough 4 days – mostly for Alexis. We are away from home, we are sleeping in a hotel, we are missing routines, we are waiting in waiting rooms and we are getting poked all week long!  She’s a tough cookie, she’s always showed us that – hopefully with this information and the Whole Genome Study – we can figure out her secrets.  And hopefully get more information to help her be stronger, smarter and happier! 

For more information about the Undiagnosed Diseases Network - read here:

Sunday, October 11, 2015

Camp Communicate - Some Photos from August

We are notoriously bad about enjoying moments with our kids and not snapping photos.  

Thankfully I have some awesome friends who will email me live-action photos of kids doing fun things.  In this case, we were at Camp Communicate in Maine in August.  

It was a fabulous camp with lots of great campers - I'm biased the two best ones were my own!  But all of the campers worked hard using their communication devices and being engaged in the camper activities.

Here are the live action shots by Randi Sargent - thanks Randi!  

Alexis in her walker - looking super-tall!

Jessica talking to Kate Ahern....

Alexis found an ORGAN and played it during the dance!

Jessica watching the end of camp video and Alexis goofing around with Dad!

Friday, October 2, 2015

Jessica Pain

Fun Title, but No Jessica is not a pain.

Jessica doesn't know pain, doesn't feel pain, doesn't recognize pain.

Why do I say this?

Here's the background data:

Age 4: Open Heart Surgery - up and walking around with chest tube hanging out 6 hours after surgery. Discharged after 2 days. 

Age 5: Kid steps on hand at school, breaks pinky bone on left (dominant hand). Jessica not in pain doesn't tell anyone for 2 days. 
Age 7: Jessica jumps off couch and lands on elbow. Breaks elbow, walks around 4 days with broken elbow. 
Age 7: Jessica twists ankle, breaks 4th metatarsal in foot, walks on leg for 2 days. 

So we try to go to BCH to get the best care we can because SHE DOESN'T REGISTER PAIN. SO THE FACT THAT THE XRAY shows an injury - treat the X-RAY not the kid that doesn't feel pain.

We didn't even get an Ortho consult at the ER.  And Dr that we saw says, if she doesn't need a walking boot - she can just wear her normal shoes.  I'm glad Jessica and I got some nap time in at the hospital.  

And that I'm a momma bear and with 14 phone calls-- I got them to see Jessica today at 1:15pm in the Ortho clinic for someone to really look at her.

Otherwise, we would have been waiting until sometime next week for the appointment.  

How else do I explain - This kid is super-human.  She doesn't feel pain.  Don't ask her where it hurts.  Watch her body language and feel her.  That's how we suspected it in the first place --- her OT thought "wow this doesn't feel right"

Let's help her out, PEOPLE!!!!!

Friday, August 28, 2015

Only Fair - A Jessica Video Collection

Fewer videos of Jessica - or she stars in Alexis' videos.  But here are some videos over the past few months of Jessica. 

The one of Jessica playing golf with her cast is my favorite.  She filmed this herself!

Jessica's 8th birthday!  How did that happen so fast?!

Jessica dancing to Shakira - check out her reluctant performing partner....

Jessica golf movie - she made this herself!

Is there enough snow?  Yeah, it's hard to watch this when the weather has been so nice for months now.

Alexis Doing Awesome Things - Video Collection

I've been slow to update the blog - as you can see from a pile of updates in short succession.  Here are some videos that I've been posting to YouTube, but haven't linked here.  They all fall into the "Alexis is cute" and working hard!  She's a punk.  She's doing a lot of new things and being a really great kid. 
Maybe some of the videos look kind of boring, sorry about that - sometimes I get a little video happy with Alexis!
Alexis checking out the iRobot.  I love it.  It cleans up so much stuff, who knew we had so much on our floors.
Alexis and Jessica typical interaction :)
Alexis yelling about something over breakfast.  Everyone who has seen this says she sounds just like me in work meetings!!!!
Alexis studying Chopin.
Alexis working hard at the stairs.... and being a punk.
Alexis and her PT giggling-- supposed to be working hard.
Alexis going over a curb with her walker.  Make sure you catch how she goes down!!!
Alexis doing 'fast running' with her PT.  
Obviously from a colder day - but Alexis and Jessica in their car.  They love it! 
Alexis talking from winter time.

Thursday, August 27, 2015

Fun Photos from April - my parents 50th Wedding Anniversary Celebration!

It's hard to believe that my parents have been married for 50 years.  But I guess if my brother is 6 years older than I am and I'm 40 - then it is possible!
In April, Mom and Dad invited tons of family and friends and we had a delightful celebration.  It's rare that we (kids) are all together.  We had a fun time!  

These are photos of Alexis in Pinehurst-- smiling in the sun! 

Wednesday, August 26, 2015

Summer Time Photos

This summer has gone by so quickly.  Most New England summer fly by as we don't usually melt our snow until April.  This year has been surprisingly dry and the rain we have received has been at night or a few sporadic days.  It means that we've been able to get out and about on weekends and enjoy more parts of New England.  Or in some cases - going to Chicago for CHARGE Syndrome Foundation Conference.

Memorial Day.  Crazy Barn.  Jessica rode it all by herself!!!

Memorial Day Weekend.  Carousel.  Matt was nearby, but look how big she's gotten!!!


Jessica concentrating on riding the horse!
The fish, with my big girl riding by herself.

Dad and Alexis!  I can't ride the ride because too many circles!

Jessica and Alexis and a REALLY BIG DUCK!!!

Jessica trying out adaptive hiking wheelchair!

Jessica taking her sister on adaptive hiking along the Charles River in Boston.

Jessica petting calf at Davis Farm Land.

Jessica gently hugging baby duck.

Jessica getting ready for pony ride.

Jessica on the Pony.

Jessica had a beach day..... such a beach animal.  Loves the sand and the waves.  Even the cold water.

Jessica with her cousins and aunt and uncle in Chicago.

Alexis and Jessica with cousins.

Matt and kids on walk/hike in Bradley Palmer State Park (Massachusetts)

Matt serious, Alexis happy, Jessica silly.  Pretty much the family!

Jessica loves player #23 on Merrimack College basketball team.  
Wanted a photo with hiking post #23.

Camp Communicate Photo by the Lake.

Jessica, Alexis and another camper (who was always awake with Jessica at 5:30am)