Sunday, December 29, 2013

Christmas 2013 and an Orthotic Change

Merry Christmas and Happy New Year to all of our blog readers!  Our December was event-filled and will always be this way.  In December we celebrated John's 31st birthday, Anica's 3rd birthday, and Drexler's 1st birthday.  We also had our annual Pokagon winter vacation and had a wonderful Christmas week celebrating with both sides of our family.  Mikan got a plethora of calendars and washable markers, Anica's favorite gift was paint, and Drexler liked his squeezable fruit and veggie pouches.

Last week I took Mikan to visit his physiatrist.  She was pleased with how Mikan has kept good range in his ankles, so she said that further Botox wasn't necessary.  We were happy to hear this because we weren't planning on continuing the Botox due to his marked gross motor slide back directly following his first round of injections this summer.  Hopefully we can keep him loose enough to avoid the necessity of this treatment in the near future.

Additionally, she said Mikan's left foot appears to have enough "active" range, that she has ordered him to downgrade to an SMO on that side.  So he will wear an SMO (orthotic that rises just above his ankle) on one foot and his regular AFO on the right side.  Mikan is excited about ordering new orthotics because he can pick his pattern.  He said he wants the months of the year on one foot and the days of the week on the other one.



Mikan's school holiday party, making ornaments.



Mikan tasting some of the treats he used to make his gingerbread house with his ABA therapist




Snooping on Christmas Eve with his cousins




Reading the note from Santa that points out his "nice" and "naughty" highlights of 2013




Christmas morning breakfast



Drexler's birthday donut



Drexler running to laps instead of opening presents






Wednesday, December 11, 2013

Pokagon State Park 2013

Last weekend we vacationed at Pokagon State Park.  The kids enjoyed tobogganing (although Mikan won't admit it), making crafts, singing carols, and swimming.  It was a great trip to get everyone in the holiday spirit.  Below are some pictures of the kids scoping out the toboggan run.






We just learned today that the adapted chair we ordered for Mikan 3 months ago was never ordered.  His new walker came in today without the chair (which was ordered at the same time).  I am unhappy, especially since I called to follow-up several times over the past 3 months.  Mikan could really benefit from this chair, which will provide added stability for eating and table work.  It looks like we will be waiting several more weeks/months.  Time to complain to the home care owner.


himself.

Sunday, December 1, 2013

Gobble Gobble Turkey and Triscuits

We were fortunate to spend Thanksgiving with many family members and friends.  Mikan's kindergarten class celebrated Thanksgiving week at their school and had different Thanksgiving foods in school each day.  Mikan was a good sport about trying small amounts of different things although he clearly didn't like them.  When the real thing came around, all he ate were Triscuits.

It seems like this is the first year that Mikan is really aware of and interested in Christmas and learning about Jesus' birth and Advent.  Last year, I remember him only being mildly interested in opening presents and having some basic understanding of someone coming to our house to drop off presents.  He has been asking a lot of questions about Christmas, like, "What is a nativity?" and "Why couldn't Jesus be born in a hotel?"  But he also isn't deaf to the consumerism abounding on the radio waves.  In the car today he asked me, "Why is everyone talking about Black Fridays?"

Mikan was only interested in putting one ornament on the tree (A Magic Johnson basketball player ornament).  Everything Anica put on the tree, Drexler pulled off.





Wednesday, November 20, 2013

Power Outage

We just finished a 2 1/2 day power outage.  Anica does not sleep well without her fan, which means John and I didn't sleep well either.  The kids played flashlight games in the evenings, and we lit candles and pretended it was everyone's birthday.  When Mikan was on the ventilator, we were on an emergency service list, which meant that during any power outages, we were the first ones to get it back, and fireman immediately came to our door to check on us and give us reports of when it was coming back on.  I guess that was a small perk to having a ventilator-dependent child.  No such service this time.  I'm not complaining though.

We had to delay Mikan's physiatry appointment, so we will follow-up with her next month to assess Mikan's range and determine the necessity of future Botox treatments.  I am very grateful for his ability to walk, but he falls down all the time.  He is determined and doesn't complain.  I sometimes think I can notice when he can't keep up and gets discouraged, but he is definitely a fighter, and his will still wins out.  With God on his side, anything is possible.



Wednesday, November 13, 2013

Wordless Wednesday Christmas Photo


Thursday, October 31, 2013

Halloween 2013: A Calendar, A Spider, and A Superman

Mikan has been talking about trick-or-treating as a calendar for months now.  I just put a few holes in an extra school calendar and tied it around his neck.  Unfortunately, it sprinkled the entire time we were out, so the calendar got saturated very quickly and pages started falling off.  He went as a different month to each house when a page fell off.  Oh well, he still had a good time.  This was the first year that he actually wanted to walk up to houses.  After a while he wanted to be pushed in the stroller, but he had some good energy at the start, telling us about each of his school friends' houses that we passed.

Anica was fascinated by the Halloween tradition.  After leaving each person's house, she turned to me and said, "Thank you for taking me to the Halloween party, Mommy."  And at times she would add, "This is fantastic!"



Mikan the calendar.


Anica the spider!


Drexler (at 10 months) fit into the same Superman Halloween costume Mikan wore at 2 1/2.  

Thursday, October 17, 2013

Mikan and Drexler, the youngest set of Gensic boys.

Mikan wakes up at 6:40, eats breakfast while getting his shoes and braces put on, and is on the bus at 7:08.    Then full day kindergarten.  He gets back home by 2:45 pm.  Then at home ABA therapy for two hours, five days a week.  On Wednesday he has physical therapy in between school and at home therapy.  He then sleeps from 7:30 to 6:40 am and does it all again.   He is starting to do a little non-Gensic boy "one more minute of sleeping" on some mornings.

Drexler is similar, but only has his mom to occupy his time.  He wakes easily in the morning and likes to see Mikan off to the bus.  Drexler is now taking up to 8 to 10 steps at a time. Both get up early, get after it all day and crash early.  If I ever get on the ground, Drexler is the first one on top of my belly with a big fat grin.   This is similar to the grin that he gives as he climbs the stairs and looks back after every consecutive stair.  It is a lovely self-conscious grin that shows our baby is almost not a baby any longer.

The next few years will be a lot of fun with all these kids and few cares in the world.   I am looking forward to it.  Should we add another to the mix?-That's my sense of humor.

Mikan's sense of humor is making progress.  While many of the jokes are potty humor, he is starting to tell jokes about the topics of his interest.  Some of his jokes involve people wearing flip flops in the wrong month, and topics like leaves falling in the spring.  Pretty hilarious.

Mikan has also shone a little bit of Gensic bullheadedness in early kindergarten.  He has assignments that require him to focus on the details of his penmanship.  He could care less about writing exactly like some one else wants him to write.  He'd rather write his own stuff in his own way.  He has had two assignments handed back to him to be redone in a neater way.  I'm wondering a little bit about how to handle this one.  I also am not sure if I am a fan of the kindergarten homework.

I am becoming a fan of parentingscience.com.  They have descriptions of results and studies done that raise interesting questions about topics like homework and parenting strategies.   One study described compared two groups of early elementary students. One group had regular homework, the other did not.  The only statistical difference between the two groups at the end was that the group that had homework disliked the subject matter more than the group that did not have homework.

Sunday, September 29, 2013

Fall Fun (Plus the Standard Illness)

We've learned over the last five years that Mikan tends to try novel foods in environments outside of the home and not always at a specified meal time or meal place.  This weekend he took small bites of apples while he was helping wash them after an apple-picking session at Grandma and Grandpa's house.  Something about the atmosphere of the work and the sensory experience of playing in the water made him feel safe trying them.  He wanted to take one small bite of each one and then throw them in the cider pressing basket.  Eating etiquette is something we still need to work on.  





Our family has been battling a nasty respiratory virus that has made it's way through everyone except John so far.  I guess it's time to brace ourself for the sick season.

We also attended a carnival this weekend hosted by a family from Mikan's ABA center.  The kids had a blast in the bounce house and real kiddie train!  We just found out that Mikan will now be able to receive ABA services at home after school for a couple of hours each day.  We are excited about the opportunity.  We will continue to use the therapy time playing eating games, establishing a homework routine, and learning to interact appropriately with his siblings and peers.

At a recent IEP meeting, Mikan's teachers said he is doing wonderfully in school and seems to be keeping up with classroom instruction.  He completes his work quicker than most of his class, and he is reading and comprehending material at a second grade level.  This is good news for now. 

News on other fronts:  Drexler just turned 9 months and he is almost walking already.  He will take one step and fall.  He is participating in a research study at Purdue for siblings of children with autism.  His developmental progress is charted at several different ages and specific autism-related screenings are conducted.  

I took Anica to the doctor yesterday for her first sick visit ever.  She did great, but is refusing to take the antibiotic the doctor prescribed.  John and I are out of ideas, so I'm kind of just hoping that she has a virus and that the antibiotic isn't necessary anyway.  Most of the first dose ended up in her hair and on my shirt and the second dose is sitting in a large cup of juice today that she is refusing to drink.  It's only a 3-day dose, so I don't think we're going to get much mileage out of it...she's a stubborn one...

Friday, September 6, 2013

More Heavy Stuff




Mikan climbing on the spiderweb at the zoo playground on his ABA field trip last week


More Equipment on the Horizon: It just seems that whenever I think we are leaning towards simplicity, extra stuff gets thrown our way.  Now we are looking at ordering Mikan a speciality walker and adaptive chair.  Although he is fairly independent, his progress is plateauing and as he gets older he wants to do more.  The walker will hopefully help him keep up with his interests and the chair will preserve his strength during meals and his drawing time (his favorite activity), providing him more stability without "W" sitting which is harmful for his hips.  Lately the goal has been preserving muscles and alignment so that future surgeries are not necessary (or at least fewer than they would need to be otherwise).

Mikan is loving kindergarten.  He is easily completing all of the academic tasks, and his favorite topic right now is the calendar, so he loves all of attention paid to the days and months of the year.  Next week the class will be broken up into ability groups for reading and math and he will begin working on advanced curriculum. He is coming home talking about his friends and different activities he does during the day, so we are excited that he is enjoying school and seems to be adjusting well.  

This week he said that he played basketball on the playground with his friends and made up the rule, "Whoever doesn't make a basket wins."  
I asked him, "So did you win?"  
Then he said, "Everyone won."

Monday, August 26, 2013

The Kindergarten Transition

Well, it's official.  Mikan is a kindergartener.  He is still attending ABA for a few hours after kindergarten each day this week and then he will continue to receive therapy in our home after school.  But he was excited to ride the bus to school and we were ecstatic to hear that he even ate some of his school lunch.  I have decided not to pack his lunch to see if he will get into the routine of eating with all of the other kids.

We were a little disheartened to hear the school PT recommend a walker to recess use and hallway transitions since this is something we thought we had graduated from a few years ago.  But they are only using it when Mikan asks for it, so I guess he will have to figure out if he wants to keep up on his own or with the help of a walker.


ABA graduation ceremony, reading his memory book with a therapist




First day of kindergarten.  All ready to go with his calendar in hand.




On the bus and excited for a new adventure.  Kindergarten is going to seem like a cake-walk compared to ABA.

After the first day of school, Mikan came home and wanted to play "teacher."  Below is a video of him reenacting some of his day (which I think is a combination of ABA and kindergarten).  He begins with "All eyes on me!" as he speaks to his two "students" (two calendars with faces on them).

Tuesday, August 20, 2013

Surgery Update

Mikan's most recent Indy extravaganza went according to plan.  Last Tuesday he met with his physiatrist for an evaluation of the effects of his botox injections.  She said that she was pleased with his increased range and improved quality of his gait.  She wants to see him again in November to see if he can maintain some of this progress.  If so, we will likely delay any further botox treatment.  We are hoping to only use them when really necessary, but his doctor may have other plans.  They will most likely be necessary for Mikan as he grows so that his heel cords do not become too tight.  If they are too tight, then he will need a heel cord lengthening surgery.  This surgery may need to be repeated if he can't stay flexible.  We don't like to think about this road ahead for him because it isn't one of continued progress.  We will keep praying for him and hope that he finds peace and comfort with his physical condition as he grows.

On Wednesday Mikan had his g-tube stoma stitched closed.  We were having problems with leakage and bleeding (despite the fact that his tube was pulled over a year ago), which indicated that the hole had never healed on its own.  Mikan has been proudly telling everyone that his second belly button is gone.

Mikan keeping himself occupied while we waited for our pre-surgery room.  He kept moving the hands of his clock along with the digital clock on the waiting room wall.



Mikan in recovery, more than a little irritated that the IV board is on his drawing hand and it couldn't be removed all night.



Anica keeping Mikan company




Feeling better by the weekend.  Tractor ride to the peach orchard.  And yes, this was the best of several photos taken on the tractor (meaning you can see the highest percentage of kid faces).

Wednesday, July 31, 2013

Botox Update and Hacienda Mess

I've been having trouble keeping up with life lately I guess as evidenced by my lag time between posts. Mikan's botox injections went well.  He was terrified of the procedure, but once he woke up he was fine and acting normally.  The injections start to take effect after two weeks.  It has been two and a half weeks so far, and we are just starting to notice some changes.  He is having a hard time walking without his braces, and he will vocalize this, saying something like "My foot isn't working," or "I keep falling."  His braces are a little easier to put on and we can stretch his calves much easier.  Hopefully this period will give him some good walking practice.  We have increased his PT to twice a week for now, and we see his doctor in a few weeks to follow-up.

The day after his physiatry follow-up, Mikan will have an inpatient surgery to close his g-tube stoma.

I was able to observe Mikan at his ABA school recently, and I was happy to see how much progress he has made.  This has helped me realize that the transition to kindergarten was the correct decision.  He has had some great therapists who have done an excellent job making sure he was having fun, but also learning.  Although Mikan is nervous about the change, I know he will transition well and it will only be a matter of time before he is excited about kindergarten.

Below is a video taken at Hacienda after we were served churros and chocolate hot sauce.  I think most parents would have been horrified if they witnessed their child doing this in public.  Instead I got the video camera out because I was so pleased about the great progress it documented.  Before this video was taken he also ate part of a hot dog bun and a french fry.



On other fronts, Anica is in a poop-smearing phase, and Drexler won't sleep more than 2-3 hours a night.

But I don't want to end complaining, so I'll add that both Anica and Mikan are extremely entertaining with their affinity for singing pop karaoke.  At our house you can regularly hear their renditions of Alicia Keys' "This Girl is on Fire," Kelly Clarkson's "Catching My Breath," Christina Aguilera's "I Just Want to Feel This Moment" or Carrie Underwood's "Before He Cheats" (which Mikan knows all of the words to).  A video to come.


Monday, July 8, 2013

Cherry Picking and Botox on the Horizon

We have been pleased with Mikan's interest in new foods.  He still will rarely eat anything outside of his crunchy favorites, but his attitude about food is changing.  I know this is a result of constant exposure in a non-threatening environment.  It is taking way longer than I ever thought it would, but I can see a more typical diet somewhere in his future.  We took him cherry picking recently and the pictures prove that he wanted to try them!  He only licked the skin, but he did it without any prompting.  Blueberry and apple picking are in his near future.

Later this week Mikan will undergo his first round of Botox injections in his gastrox muscles.  He will receive additional PT during the weeks following the injections in order to maximize their effect.  This is the first procedure he has undergone where I am not very optimistic about the results.  I know the effect is temporary, and I know that he will continue to develop more muscle problems as he grows.  We are struggling with accepting this ongoing issue.  It's good to know that time and therapy will make things better, but we can't be sure that is true for his ataxia and spasticity.  These issues will need to be managed lifelong, and I'm not sure I'm ready to sign him up for a life-sentence of Botox.  We have made the decision to try them once and see how he feels.

We have also decided to sign Mikan up for additional OT sessions through the summer since he has a little extra time.  But after this summer I think it is time to scale back.  I am ready to say "no" or "this is too much" or "he's doing fine" to anyone suggesting additional treatments.  Mikan will soon be able to communicate better what he wants and better direct his therapy.  Right now I am deciding those things for him.  But it's wearing me out.  And I'm not even the one in therapy.











Thursday, June 20, 2013

Surgeries Surgeries

Mikan will most likely receive his first botox injections in a few weeks.  We are anxious to see how the treatment might help him and if there is any permanent carry-over.  Although he can walk independently, his gait is awkward, and he still falls a lot, and I'm surprised he doesn't have more muscle injuries.  Unfortunately, he doesn't communicate pain all that well, and his high pain tolerance leads me to think that he really does experience pain on a regular basis, he just doesn't talk about it.

Additionally, we will be seeing a pediatric surgeon soon to consult about the possibility of closing Mikan's g-tube site.  We have noticed dried blood around the area several times, and many of Mikan's doctors have suggested that this warrants attention.





Underwear Head Night



Splash Pad



Drexler doing some bucket-ab work

Monday, June 3, 2013

Natural Environment Training


Summer fun in the sprinkler



This week Mikan's Natural Environment Training (NET) begins.  After his normal ABA schedule, from 5-7 one evening a week, a BCBA behavior consultant will come to our home (or park or wherever we happen to be at that time) and observe our evening routine with Mikan.  She will then offer suggestions to help with specific problem behaviors (including eating, sharing toys, etc.).  I am looking forward to gaining more advice about how to help Mikan succeed.  We think ABA has done wonderful things for Mikan.  We will most likely transition out of the ABA program some time in the fall since his consultant thinks he will be ready.  I am looking forward to more typical routines.

Sunday, May 19, 2013

Questions we asked Mikan's Walking Doctor, Botox and Looking forward...

How long will it take for the botox treatment to wear off?

Will botox require general anesthesia?

How often will he need treatment?

What is the worse possible scenario regarding using botox in this way? Why does the internet describe lethal scenarios using botox on kids?

What should we expect in X number of years after Mikan's legs become immune to botox treatment (if we continue getting treatments)?

How much of a change in baseline flexibility and mobility will we see after the botox treatment has run its course?

How exactly does Botox get this effect within the leg?  How is that different from botulism? (AP Bio level of explanation related to neurons and acetlycholine here).

I asked Mikan today..."Will Anica need leg braces when she gets older?" His response...
"Yeah, not right now though."

Mikan will probably get a round of botox in his calf muscles in about a month (pending insurance approval).  His flexibility and stability have not much improved over the past period of months, therefore we are going to do a mildly experimental intervention to hopefully help him out.  The botox will be three small doses in each calf while he is under general anesthesia.

Jenna and I are very curious about how he views his physical instability.  He is starting to reveal glimpses of awareness with random comments.  Usually these are times he is discouraged.  I am starting to understand how it is going to be living the reality of having a son with CP.

Largely, he has been sheltered from the world to this point.  He will start kindergarten in August.  I feel like he is thinking about this type of transition as well.  I notice it mainly in the way he is eating. For the last two weekends, we have eaten out at a restaurant or at a large family gathering.  In those situations, he is much more likely to explore food options that are new and pushing his comfort level.  In my mind, I am picturing in his mind that he knows there is social pressure to eat more normal foods.  Therefore, he is eating in these contexts.

Based on his responses in these more socially pressed situations, I think he is going to be a school gamer.  Where the following phrase comes from his teachers, "He does what at home? We don't see any of that here at school. That's strange." I am already getting that vibe from his therapy school.


Wednesday, May 15, 2013

The Schooling Decision


 Well, we are feeling pretty conflicted about Mikan's schooling future right now.  We've consulted with his IEP team who all think he needs to be in kindergarten.  The problem with sending him to another year of preschool is that his interests are too mature.  It will be difficult for him to socialize with kids who are not interested in the same things that he is.  Right now we are leaning towards sending him for nearly a full day of kindergarten and then taking him to his ABA therapy center for a few hours at the end of each day, or at least a few times a week (assuming our insurance approves the hours).  I observed at the kindergarten we would send him to and I realized that he already knew everything they were learning.  The kindergarten teachers are qualified to differentiate instruction for him and scaffold his learning, so I really am beginning to think he needs to be there.  He still is very emotionally immature, but he will have a full-time aid at school that will help set up social opportunities for him to be successful.  We are putting our faith in God that this is the right decision for him.

We are heading to Indy soon to follow-up with Mikan's physiatrist.  We will discuss the possibility of botox injections and other bracing regimens.



 The weather is warming up, and we've been playing outside!!!



But it was cold enough last weekend to need a winter hat still...





Mikan was pretty proud of his "city."  Each of the objects on the table he said represents either Granger, South Bend, Mishawaka, Elkhart, his ABA school, his future kindergarten, Meijer, and United Art and Education






Thursday, May 2, 2013

March of Dimes Walk, a Schooling Change-Up, and The Book


Last weekend we participated in the annual March for Babies walk.  We want to thank everyone who donated to Team Mikan Boy.  The weather was perfect, the kids loved the bounce houses afterwards, and we all got to explore the minor league baseball stadium.  





After much discussion with Mikan's doctors and therapists, we have made the decision to send him to a half-day preschool program next year instead of kindergarten.  He will remain in ABA therapy for the remaining half of the day as planned, but we have decided to transition him into a mainstreamed preschool setting rather than kindergarten due to his social immaturity.  I still feel like I have to explain what he wants or intervene whenever he is approached by a typically developing peer in order to maintain the conversation between them.  We are optimistic that this will give him a chance at a more typical social experience.  His ABA program will continue to give Mikan opportunities to explore his academic interests so that he won't become bored. 


Finally, I recently self-published several print copies of my personal essay collection about Mikan's birth and the first three years of life.  It is available for purchase through jennagensic.blogspot.com.  You can also click on the book cover on the sidebar.  Please share this with anyone you think may be interested in our story or may benefit from it.