Madison just had her last day of Kindergarten, and it was a beautiful day.  She had such a wonderful year, so seeing it end was a little bittersweet…  We couldn’t have asked for a better kinder experience for Madison.  She learned so much and blew people away with all of her accomplishments.  Madison had a wonderful instructional assistant, Andrea, this year.  From the beginning, Andrea just really seemed to “get” Madison.  She seemed to know exactly when Madison needed help and when to back away and give Madison some independence.  She is extremely dedicated to Madison and took her job very seriously.  AND, we got the fantastic news that Andrea would be working with Madison again next year! 

Physical Therapy/New Wheelchair:

To the dismay of some, Madison is being assessed for a wheelchair.  People tend to think this means we are giving up on her walking.  This is not the case, and we hope to be able to have her use both a walker and a wheelchair throughout her day.  She still has her wheelchair stroller right now that we push around for her, but her therapists think that she is ready for a chair that she can control herself.  She has tried out a few different ones, and seems to do quite well in them.  Before I entered this world, I never realized how hard it could be to teach someone how to use a wheelchair!  That is a skill in and of itself and can be really challenging!  Part of our decision to pursue a new wheelchair is that it takes SO much energy for her to walk she is incredibly fatigued a lot of the time.  And next year, she will be in school for a full day, and it just doesn’t seem feasible to expect her to walk everywhere all day long.  Doctors have warned us that eventually she might decide to give up on walking because it will be so much easier for her in the chair, but my gut tells me that we don’t need to worry about that.   This kid LOVES to MOVE (all the time!) and I just don’t think she would be content in a wheelchair the majority of the time.  So we will just have to figure this out as we go and come up with routines that will make her day go smoothly.

We met a wonderful new doctor, who is a pediatric Physiatrist and he had some wonderful advice for all of us.  (This was during an appt. with Maddie’s PT and OT.)  He said we DO just need to let Madison figure things out for herself, even if she is not doing things the “right” way.  He saw a spirit in her that he was encouraged by and seemed to have a lot of hope in her future.  He told us that we need to stop worrying SO much about HOW Madison is getting from place to place, and that we need to realize her destination is the most important part.  At school, we want her to be happy and comfortable while she is learning; not completely exhausted from trying to walk everywhere.  His analogy – if it takes you a half hour to get from your car to the mall, you are going to be so frustrated by the time you get there you aren’t going to have any fun shopping!!!   However, he was NOT saying Madison shouldn’t/couldn’t walk – we just need to not let the walking get in the way of everything else.  This was such a good perspective for all of us to hear!

A bit opposite from that lovely saying:  “It’s not the destination, it’s the journey.”  J

Movement Disorder Clinic

Madison had a big doctor’s appt. in June.  We went to a Movement Disorder Clinic, where several different doctors had a chance to stare at our little girl for a while.  They all seemed baffled by her.  That is always so comforting!  They had nothing more to offer in terms of diagnosis or prognosis.  They all seemed to agree that Madison has more of an diskenetic Cerebral Palsy rather than an ataxic Cerebral Palsy, but those semantics don’t really change much.  Madison was incredibly charming, and made lots of doctor friends that day.  We saw a neurologist that specializes in movement disorders (however it was clear that he did not specialize in children!)   He was really surprised by the way she walked and noticed that she has absolutely no pattern to her gait.   Even people with CP who walk tend to have a specific pattern, but he said her walking movements are completely random.  He compared her to a puppet that was being held up by a string and was surprised she could do as much walking as she does.  The bad news that we received that day is that she is, indeed, causing a lot of damage to her knees with every step she takes.  We have always suspected this, but he confirmed this.  We have been struggling for four years to find good leg braces for Madison, but nothing seems to do the trick.  This very charming Dr. said that she needs to get “Forest Gump” braces.  LOVELY. Right now, she has a pair of soft black leg braces with joints inside of them.  They are hideous, but seem to help some.  The problem is is that they just don’t stay on her legs, and it is a constant fight to make sure they are positioned correctly.  And they are HOT!  Also, she is so hard on them, and they are constantly breaking and ripping.  So, we will continue working with the orthopedist, the PT and OT and the Physiatrist on trying to find the best braces for these beautiful skinny legs!

Speech

Madison is now talking!!!  God has now blessed her with a voice, and it is the most beautiful thing you could ever imagine!  She certainly has a very UNIQUE voice, and says some things in the most unusual (adorable) way, but we (and most other people) can really understand what she wants and need the majority of the time.  It has been truly amazing watching this happen.  Though she is so much older than most kids who are learning to talk, she still went through all of the same stages.  Just this year, she started babbling.  She would lay in bed at night (LOVED THIS!) and just recite things and play with her words until she fell asleep.  One night I heard her counting herself to sleep  – and I never knew she could actually count that high!  Other nights, she would list names of friends and family members.  Or sometimes, she would just lay there and blow zerberts.  J  Now, she is also mimicking all of the time, and we have a little parrot in the house.  LOVING IT!  The best is when she tells me something I don’t know…  Who’s birthday was it at school?  (“Cheyenne’s!”)  We knew she was sarcastic even before she had voice, but the voice is definitely bringing this out in her.   (So much like her daddy!!!)

We can’t mention Madison’s new voice without mentioning her amazing speech therapists!  Jamie, who she has been working with Madison since she was 3, continues working with Madison at home several times a week.  Jamie is incredible, and has been doing some amazing work with her.   She keeps therapy fun, and Madison is always so excited to have Jamie come over! 

Also, her school speech therapist, Carly, has been great, and Madison has done some fantastic work with Madison as well.  We are so grateful for these amazing people in Madison’s life.

Keeping Us Busy!

Another wonderful thing that has happened to Madison this year is that she now gets tutoring once a week from our dear friend, Darla.  The progress Madison has made with Darla is incredible!  Darla works on just about everything – reading, writing, math, cutting…  Darla is very intuitive when it comes to Madison, and seems to be able to match their activities to Madison’s particular mood that day.  We asked for Darla’s help for several reasons.  The biggest would be the fact that Madison and I DON’T work well together.  I have a lot of patience, but if I’m trying to read a book with Madison and she THROWS it at me, I don’t deal with it very well.   If we are doing site word flash cards, and she says “I dunno” for all of the words that I KNOW she knows, I get very frustrated!  So, clearly we have some major behaviors we are trying to work through (on both of our ends!) and I didn’t want those to get in the way of her learning while we are trying to figure those out.  And Darla was so incredibly open to the idea it worked out perfectly.  So now, Madison does work on her site words at home, reads her little readers, etc…  All of things I really wish I could do with her myself!  Darla has been homeschooling for the past 20 years, and has an amazing talent and beautiful spirit. We feel incredibly blessed that Madison gets to benefit from Darla on a weekly basis.

Madison has also had the beautiful opportunity to become a Daisy Girl Scout this year.  This is the CUTEST thing ever!  Another dear friend of ours, Kathy, began a troop this year and was completely open to having Madison join the troop.  This has been such an amazing experience for our little girl, and we are so grateful to Kathy!  She has completely taken Madison under her wing and goes to extreme lengths to make sure Madison is included in everything that the troop does.  She also understands that Madison doesn’t generally do her best when I am around and is always reassuring me that it is okay if I leave.  They had a field trip to the fire station this year, and I just assumed I needed to come along.  Kathy told me very directly that it wasn’t necessary that I go – she would be driving Madison and would be putting her wheelchair in another mom’s van and that I had nothing to worry about.  To give Madison these independent experiences with such kind and compassionate people one of the biggest gifts anyone to give to either of us. 

Madison had the opportunity again this year to take swim lessons through the City of Riverbank.  These people have been incredible to work with.  Last year I asked if there was anyway for Madison to join a class and if we could pay extra to have an extra helper with her.  They said it would be no problem and NO extra charge.  So again this year, she was in a regular ol’ swim class with other 4 and 5 year olds, but had an instructor there just for her to make sure she was safe in the water.  Madison absolutely LOVED it!  (“More swim lessons, right now please!”)  Madison’s skills in the water are…  interesting.  Her biggest accomplishment this year was that she could hang on to the side all by herself.  (Which is actually quite huge!)  Though I think it feels so good for her to be in the water, those little legs are just as out of control IN the water as they are OUT of the water.  Because she loved the lessons and being in the water so much, I decided it was finally time to pursue swim therapy.  I have always known it was out there, but was hesitant to tack on yet ANOTHER activity to her already insanely busy schedule.  I contacted the instructor, Bruce, who has an adaptive aquatics class at a local health club.  SO, now Madison goes to those lessons twice a week.  The biggest drawback to this is that I have to get in the water with her.  UGHHH…  Sorry, but I just don’t like the water too much and it is hard for me to control Madison’s long/skinny/slippery/twitchy body in the water.  But, I really want to know what we can do to make sure Madison has fun in the water, so I suppose I need to pay my dues!

Another thing we decided to pursue this summer is getting some chiropractic care for Madison.  I had been doing some research on this, and realized there could be some huge benefits to Madison seeing a chiropractor.  Derek and I go to a wonderful chiropractor each week (Dr. Johnson in Riverbank – you should look him up!) and I asked if had experience working with children.  He did and he was very open to working with Madison.  Madison had her first appt. and adjustment at the end of June, and it went incredibly well.  She was a model patient.  J  I think all of her work with Alice prepared her for laying patiently on a table!  She loved the adjustment and I am happy we have another person learning and understanding her body.  With all of the falling she does, I feel that it is important to make sure that anything that is jarred out of place is dealt with.  So, she is now seeing Dr. Johnson once a week.

I’ve gone on for way too long, as usual.  I have no incredible closing remarks this time, except to say we are SO proud of our girl!!!