Walk this way

Chamberlain has been working very hard at his kid walk.  Take a look at the video, see link below.  He is walking about 10 ft, to a desire objected very purposefully.  It really makes our hearts happy to see him moving like this.

We have been working with our school district to provide Chamberlain with an awesome education.  We have not finalized everything yet, but once we do we will provide an update.  We are very happy with how the last meeting went and look forward to next year.  This process has required a lot of work.  We want the best possible education for Chamberlain.

The next task is getting a ramp for our home.  This will enable Chamberlain to get in and out of the house more easily.  With equipment and his weight gain it is much more difficult to get him in and out of the house.  Having a ramp will allow him to participate in outdoor events more easily within his community and get to school easier in the fall.

 

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I spy with my eye.. Changes

We have had numerous changes within the last two months.

Our family grew from 3 to 5 quickly.  We welcomed, Sullivan, on 3/5.  He was 8lbs 7oz, 20 inches long.  Sullivan was quite a bit bigger than Chamberlain  Chamberlain is so in love with Sullivan.  He really enjoys watching him and giving kisses.  These two are going to be quite the pair as they grow up together.

We also welcomed, Isamara, to our home.  We call her Isa, sounds like Eza.  She is an au pair from Brazil.  Chamberlain just adores her.  She is incredible with both kids.  She plays and plays and plays with Chamberlain and Sullivan loves the snuggles.  She wants to improve her English skills while in the US, to have better job opportunities when she returns.

Chamberlain recently got glasses.  We thought he was the cutest before, but now… We are hoping these glasses will give him the best vision possible.

 

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It has been super busy, we have been going going going.  Lots of follow up appointments this month, well actually all of our follow up appointment fell in this month.  I will be avoiding that the next time.  Way too much for all of us.  Chamberlain is gaining too much weight now on his new diet.  We had to make adjustments.  Sadly the seizures are not controlled yet, but hoping these adjustments will help.

We are embarking on transitioning into the school district from our Early Intervention Program.  This has been quite a learning for Jeff and I, and we aren’t even halfway through the process.  We will continue to advocate for Chamberlain to get him what he needs.

 

As 2014 comes to an end

2014 was another year full of ups and downs, and the we have had quite a few recently.

Let’s start with the fun:

Chamberlain uses a Nova Chat, which is a speech communication device.  For some reason this is not a covered item through insurance, and it is quite pricey.  We submitted numerous appeals with letters from all the big hitters in C’s life (our ped and therapists) and peer reviewed journal articles.  However,  they still said NO.  Variety Children’s Charity of Greater Kansas City was able to provide assistance with getting a Ipad version of it of the Nova Chat.  We are very excited.  We have received most of the items to make this speech device work for C.  Having a visual impairment and gross motor delays, it is very hard for him to communicate.  This device will allow him to start communicating his needs and wants.  So if you ever need or want to support a fantastic charity, Variety is near and dear to our hearts.

Another incredible event recently was an anonymous donation to our family to use for Chamberlain.  We have decided to invest in a lift for our minivan (which is the most awesome vehicle ever).  It is something that we will be able to use for a long time and move to another vehicle when the time comes.  This is so very exciting.  C’s Zippy is heavy, but as he grows his subsequent chairs will be even more heavy.  The lift will be something that “lifts” the chair out of the back of the van and lowers it to the ground and also does the reverse.

C got to visit the Big Guy this past weekend.  He seemed happy about getting his photo taken with Santa.  Before he would pose, he had to check out the surroundings first.  It was a fun family event.  Santa was super.  He also got to meet some Chiefs Rookies at his preschool.  He seemed very happy about that too.  Go Dee Ford!!!  See both pics below.

Both fun and not so fun:

We are the new owners of a Kid Walk.  This is a gait trainer/stander.  C absolutely loves it.  He has been moving it forward some, and can go backwards with ease.  Jeff and I love it, it is so perfect for him.  It supports in all the right places for our kid and we could not be happier.  This is a piece of equipment absolutely necessary for someone who cannot stand or walk.  The body needs that input to grow and develop probably.  Chamberlain’s hips are 20% subfluxed.  This means his hips are not fully in the sockets about 20% out.  If they become 30% subfluxed, then it means surgery.  If that surgery doesn’t work, then one more surgery.  We would like to avoid both surgeries and are hopeful this will help us do it.  But ultimately, we must avoid total dislocation.  This can be very painful and once you get to that point nothing can be done.

The not so fun parts:

C’s seizures are back and in full effect.  We made a switch to a new Neurologist who is in the Epilepsy clinic.   We are very happy with this change.  And he has suggested trying the ketogenic diet for Chamberlain.  The ketogenic diet is a last resort, typically after three failed seizure medicines over a course of a specific amount of time.  We have tried four meds and had success with three of them for almost a year.  Now they are not working, and the chance of a different med working is slim to none at this point.  We have also tried all the top notch meds.  So we are going to try the ketogenic diet.  It is a huge undertaking and requires some major changes.  Doctors don’t know how or why this works for seizure control, but it does for about half of those who try it.  We have been reading a lot about it and preparing for this change.  It requires an inpatient stay, which should occur in mid January.  We are very hopeful for seizure control.  This monster cannot be allowed to continue to terrorize Chamberlain.  It can cause additional damage and can change and evolve.  It can also do worse, so we are not messing around.

We have had some illness recently and are trying to keep this kid healthy for the pending inpatient.  When C gets sick it takes him a really long time to get over one illness.  It hits us really hard.  Last year he was back to back, so he has been hanging out with mama a lot lately.  Thank goodness for work flexibility!!  I cannot be more blessed to have such an incredible boss and work for such a wonderful company.  Jeff is also able to flex his work schedule which is a tremendous help and gift for our family.

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We are looking forward to Christmas break and the New Year.  2015 will be a whole new adventure for the Franklins.

Happy Holidays!!!

Mega Update

It has been quite a while since we have provided an update.  So I am going to give this the scientifically inspired name, Mega Update.

The family, all six of us, went on vacation back in August to Lake Michigan.  All six means we are expecting.  Chamberlain will be a big brother in early March.  Vacation had a few bumps.  Chamberlain was vomiting most of the trip.  I was trying to feel less nauseous, but not super successful.  So we did have some challenges.  The drive was long.  This was our first driving vacation.  We stayed in a town called Traverse City.  Lots of food and beer (for Jeff).  We enjoyed the scenario and taking lots of walks.  We even took a family bike ride (dogs and kid in a buggy).

Once we returned home the craziness began.  Chamberlain began preschool at CCVI in Kansas City.  CCVI, Children’s Center for the Visually Impaired, is really an awesome school for Chamberlain to attend.  They address all his needs.  C get’s PT, OT, and Speech.  He also gets to be part of a wonderful classroom with other children with visual impairments and sighted peers.  He really seems to like it a lot, and of course he has captured his teacher’s and therapist’s hearts.  We trek up there twice a week.  The other days of the week are either daycare or appointments.  We are very busy with this new schedule.

C has made some great gains with is head control since moving up classrooms at daycare.  And he has made even more progress since starting preschool.  We have ordered him a gait trainer.  A gait trainer is something akin to a walker for babies, however it addresses his need for support and it grows with him.  C tried out this gait trainer at a recent appointment, and he did exceptional it in.  He was weight bearing for a great deal of the time and he even moved it forward.  Our hopes are once he figures out he can move his body (with assistance) he will be more motivated to do so.  Other things he has been doing more or started doing lately: laughing a lot, more interest in different and new toys, more visual attending, and gaining more weight.  We will continue to work and do everything we can to help Chamberlain progress more.

I would love to report that he is still seizure free, but unfortunately he has started to have new and different seizures then before.  We almost hit the year mark of being seizure free.  So now we will adjust meds and try to find the combo that stops these.  Seizures are very scary!!!!

As we go into the cold and flu season, we are trying to keep C well.  Last year was rough for him and being sick.  We haven’t had a great start.  It seems like the viral bugs have been out and about.  This year though, we have his breathing regime to help clear out the excess mucous.  This regime has really helped C.  So here’s hoping we can all stay healthy this season.

And finally please enjoy some cute pics from this summer including vacation, preschool, and our recent trip to the Pumpkin Patch.  C absolutely loved the hay ride, he talked the whole ride to and from the pumpkin patch.

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Weighing in at….

Chamberlain has recently been gaining ounces like a champ.  He is now weighing 21 lbs.  He finally almost on the growth chart!!!  Though the growth chart changes to a different one at the age of 2, but we are enjoying this triumph.  The blenderized diet is going well, and the results are showing.  We recently went to a GI appt, and our provider was so impressed.  She was very pleased with his weight gain.  We hope to fatten this kid up some more.

C is a proud new owner of a ride-on car, courtesy of mama and dada.  We had to make pretty major modifications.  We had help though.  I would like to say a huge thank you to Steve Muse for consulting on the electrical.  Without Steve’s help, we would still be trying to figure it out.  We had to add a kill switch and the “Big Red” switch.   The Big Red enables C to power the car more easily.  It is a bigger target, easy to depress, and way easier for C to actually see it.  We then had to add a roll cage, back support, lateral support, cushioning, and a five point harness.  We got the idea from GoBabyGo.  It is a project at the University of Delaware.  It is a great project and we are so happy we could make one for C.  He really enjoys it and it provides him with mobility.  He has driven it a few times now.  One time he went off roading and was heading straight for a tree.  Good thing Dada was right there to stop him and that the speed is set to turtle!

We continue to work very hard everyday.  Chamberlain participates in PT, OT, Speech, Vision, Pool Therapy, and the Feldenkrais method.  C has been making some great progress with making choices.  We are trialing a NovaChat.  It is a device to provide C with a way to communicate with us better.  We have been focusing on More and All Done.  He understands those concepts really well.  He has to work extremely hard to make an accurate choice though.  He likes to swat at the device, and we are trying to get him to do it in a more controlled manner.  We have also added toys, activities, and people to his device.  We are working hard to give him a way to communicate.  It is very important for him to have a way to communicate his needs and wants.  C has been a giggle monster lately.  We love hearing that laugh.  He also seems more aware of others and has been attending visually better to people and objects.

C will be 2 very soon.  We will be celebrating with a small party and some CAKE.

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Here is a link to a video of C driving:  https://www.dropbox.com/s/6gr3nt7tciyodt6/20140608_112841.mp4

 

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The good, the bad, and the PMG.

I wanted to post a comprehensive update about Chamberlain this time.

The Good:

We have started the blenderized diet (BD), which has been amazing for C.  He is getting real foods, not the very manufactured formula any longer.  It very interesting to me.  I need to create a days worth of food with various ingrendients the meet his caloric intake, vitamin and mineral needs, as well as fat and protein.  Sodium, zinc, N3 fatty acid, N6 fatty acid, carbs, Pantothenic acid, the B vitamins, iron, calcium, A and C vitamins, and everything else has to be just right.  It is right up my alley of interests.  I have had a wonderful mom helping me along the way too, who has been there already.  We will soon be the new owners of a Zippy Voyage stroller.  “Come along and ride on a fantastic voyage, slide slide slippity-slide” runs through my head when I think about the stroller.  It appears to have everything C needs for support, with room to grow and adjust.  We have officially had C’s seizures controlled for 6 months now.  This is very important for his progress.  Seizures are nasty, and they can disrupt learning and really harm the brain.  And finally, it is almost Spring time.  We have been anxiously waiting for winter to end, and Spring to be in full bloom.   We are hoping this will give C a reprieve from being sick almost every other week.

The Bad:

Winter!  It really hit us hard.  Being sick takes its toll on C.  It impacts everything, ie weight gain and progress.  It takes him longer to get over a cold then the typical child.  By the time he is over one, another is on the horizon.  Jeff and I have probably never been sick so often, as we have this winter.

And the PMG:

C has yet to really discover his body and various body parts.  He has discovered chewing on his hands.  We are hoping he will start making more connections and we are trying to build those pathways in his brain.  The above mentioned winter, has made it harder for us to really stay on schedule with therapy.  Some of the different things we are focusing on right now is communication, movement, and always oral eating.  We are confident C can understand some language, but he doesn’t have a way to communicate with us very effectively.  We are trying out some different strategies right now to help him figure out how to communicate his needs.  We are always encouraging C to move on his own and figure out he has body parts to help him with that.  What we have yet to find a good motivator for him.  We will continue the search.

Chamberlain is such a happy kid.  He gives us lots of laughs and smiles.  He is amazing!  Here is a pic of C with Flat Stanley.  We are participating in a school project for another little boy named Sean.  Here is link to the Facebook group, https://www.facebook.com/groups/Seansflatstanleyproject/.  Sean’s mom is part of the PMG Awareness group.  She has worked with TruSpeed Motorsports to get PMG kid’s names on a car.  Here is their FB page, https://www.facebook.com/TruSpeedMotorsports.  It is really cool.  I have also attached a pic of C’s name on the car.  His name is in the first photo, right by the window.

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Goodbye 2013! Hello 2014??

2013 was a hard year in a lot of ways: diagnosis, seizures, Seattle, surgery, and more.  On New Years Eve, Jeff turned to me and said “I know 2013 was tough, but we have each other and will always.”  So as hard as 2013 was, we still have a wonderful family and are lucky in so many ways.  So, we are hoping 2014 will be easier but if not, then we always have each other and in the end that is all that truly matters.

2014 hasn’t lived up to all its glimmery hope so far.  But we aren’t even a month in, so the jury is still out.  I foresee this year being hard in many ways, but there are some bright spots out on the horizon.  Hard because we will hit the mark that seemed so far away when we received C’s diagnosis.  His two year birthday.  All the doctors said we don’t know much now, he is too young.  At around 2 years old we will know more of what the future holds.  We have started discussing adaptive equipment with our therapists.  Seems so early, but we have to start getting prepared for C’s needs as he grows and gets much too big for all the “baby stuff.”  This means a special stroller, so C can be more easily integrated into his environment.  For example, playing with his peers at daycare.  It is kind of hard to interact if you are doing it from the floor staring at the ceiling, when those peers are off running around.  We will also hit our year anniversary of C’s diagnosis, that will probably be somewhat difficult from what I hear.  However, many other PMG families have told me the first year is the hardest.  So with that, maybe 2014 will also hold something more, something I don’t know yet.  Once that day passes, will it feel different and will we be better equipped to handle everything?  Who knows?  I guess we will know soon enough.

We are all ready for this winter to be done already.  With Spring, comes the hope of C not getting sick with every bug and virus.  C has been hit hard this winter, poor kid can’t catch a break.   After Spring, SUMMER!  C loves to swim, so hopefully we can partake in that activity as frequently as possible.  Then at the end of summer, C will be a cousin again.  Very exciting!  And we are planning a family trip (dogs included, oh my).  We have recently learned traveling by aeroplane is somewhat fraught with difficulties.  So we are planning our first ever car trip.   We have decided Lake Michigan holds the appeal of beaches, but not the long haul of an actual coastal beach.  This will be very interesting, this is neither Jeff’s nor my idea of ideal travel, but who knows we might decide to buy an RV next year.  AHHAHA, who am I kidding, that will NEVER happen.

So 2014, we will see.  Regardless, Jeff and I are very blessed to have each other and even more blessed to have Chamberlain as our son.  We will continue to give C every opportunity we possibly can.  And help him learn and help his brain create those pathways.

Jenna

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Tubular Dude

From the last posting, we were expecting to be feeding tube free.  Well, C is a proud new owner of a mic-key button, aka a G Tube.  Feeding basically did a 180, and C was losing weight.  We made the decision to get a G Tube placed because his nutrition is very important.  We worked really hard to continue to feed orally only, but it just wasn’t enough.  Feeding time had become very stressful for everyone and we do not want C to associate any stress with oral eating.  We had to look at the bigger picture.  Do we continue to try oral feeding only and compromise his safety and health?  NO WAY!  So, we went in to GI for an ad hoc appointment on Oct 22nd.  During that appointment we decided it was best to have C admitted to the hospital.  In admitting, we could get everything he needed done more quickly.  Everything went very quickly.  They placed an NG Tube, which goes through his nose into his stomach.  We were very clear in communicated to all players, we did not want to go home with an NG Tube.  If we were going to be feeding C through a tube, we wanted to go forward with placing a G Tube.  The expected wait was 4 to 6 weeks.  The Surgery Resident visited us on Wednesday.  Thursday they informed us we were possibly going to be put on the schedule for surgery Friday.  Then boom, we were put on “The Boards.”  The surgery boards are apparently somewhat elusive and hard to get on so quickly.  Friday was very difficult, the waiting…… and more waiting.  C was finally out of surgery and we could start the feeding process.  Saturday morning, Surgery came and cleared us for real food.  Later that afternoon we were on our way home.  So quickly it all went.

So far C has gained over a lb in two weeks.  He is doing very well.  We have had adjustment of course, but all in all it has been a good decision.  C never ceases to amaze us.  He takes everything in strides, hardly complains about a thing.  He is a happy kid.

In other news:  C had his first haircut.  It was so cute.  He didn’t much care for it initially.  But once we got out the camera and started snapping pics, he was into it.  He loves having his picture taken, then looking at them after.

He was Baby Franklinstein for Halloween.

Chall

CP, DAFOs, and GI. Oh My

C has had quite a busy month.  Sometimes it feels like we need a translator.  We recently went to the Rehab clinic and they diagnosed C with Cerebral Palsy (CP).  Which is something we have been asking for because it really opens the door up regarding insurance coverage and services.  They also prescribed DAFOs which are braces for his ankles.  DAFO means Dynamic Ankle Foot Orthoses, and you can say it like dayfo or dafo.  And finally, we saw GI, Gastroenterology.  Right now, we are not expecting to get any sort of tube (feeding tube),  which is wonderful, and we will continue Operation Fatten C Up, or OFCU!  He needs to gain weight.  We continue to work very hard on getting him to eat and drink all he should daily.

Seattle

Most recently the family took at trip to Seattle to see Dr. Dobyns.  Dr. Dobyns is the expert on PMG.  We wanted to get as much information as we could about PMG, so we could help C as much as possible.  We did get lots of good information, but we also heard some pretty difficult things as well.

Here is what we learned:

  • Therapies are very important for C’s brain and will help him accomplish tasks, ie rolling, sitting
  • He most likely will not walk
  • He will most likely have very limited communication.  Probably through an Augmentative and Alternative Communication AAC Device or ASL American Sign Language
  • His whole brain is affected, 100%

Dr. Dobyns gave us a prognosis based on his extensive research regarding PMG, however, this does not determine what C will be able to accomplish.  We will not limit him by this prognosis.  We will continue to work hard and celebrate everything single accomplishment, big or small!

Please check out these other blogs, also children with PMG.

http://www.schuylersmonsterblog.com/

http://hudsonschallenge.wordpress.com/

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