Blessed

For this Mother's Day, I again want to dedicate a post to my incredible mom.  I actually was just going to repost the one I did last year, Happy Mother's Day, because it pretty much sums it up.  But I realized that some things have changed.  (Like my mom takes care of Parker 5 days a week now rather than 1.)

Blessed :   divinely or supremely favored; fortunate; enjoying the bliss of heaven

I use the word blessed often.  And I don't take it lightly.  I don't say that I am blessed to have a cup of coffee this morning.  I am lucky, or happy, to have a cup of coffee this morning.  But not blessed.

I am, however, very blessed to have many other things in my life.  My sweet boys, my amazing husband, wonderful family, our health, good friends, and my mom.  

My Mom.

I have always called her my angel here on earth.  (yes, even when I was young and you are not supposed to get along with your mom)  And that is exactly what she is.  

She has this uncanny ability to make everything better just by a touch of her hand.  When I come home at the end of the day and am wiped out, trying to get the boys their dinner, 2 or more of them might be crying/screaming, and I am about to fall over - she will just put her hands on my shoulders and I melt.  All of a sudden the stress of the day disappears and I am like a 5 year-old little girl who just crawled up in her mom's lap so that she can make everything better.  

She has this fun way with the boys - always thinking of them and what might be exciting to them.  When she comes over (every weekday morning), she usually has something fun to show the boys.  It can be as cool (literally) as a bowl of snow or as simple as a cantaloupe (which Ryder thinks is a ball).  Either way, they love it when Grandma has something "special" for them.  They will all gather around and "ooh" and "aah" over it and even sometimes cry over it - like when we had to tell Ryder that he can't bounce the cantaloupe.  She will play baseball with the boys or blow bubbles with them.  Brady really wanted to plant strawberries this year, so she bought all the supplies and helped him plant his own pot.  She will read to them and even wrestle with them!  (I have to remind them that they can't wrestle with her like they do with Daddy.)

She is the most selfless person that I know.  She would give up anything (and does) for her family.  She has given up her retirement (time and money) for my kids.  She went from watching them one day a week the first 2 years of their lives to watching Parker full time this past year.  That is a BIG commitment.  That means that every single weekday, instead of rolling out of bed whenever she wants to and enjoying a cup of coffee while leisurely reading the paper as most retired people do, she gets up at the crack of dawn (5:00) and heads out at 6:30 to our house.  She has to be at our place by 7 AM since we both have to be at school by 7:30.  And this is not your typical, "go to the park, hang out and do arts and crafts" type of babysitting gig.  She has to hit the ground running.  Parker has appointments every day of the week and they usually start first thing in the morning.  She dresses him, feeds him, changes him, teaches him, laughs with him, chauffeurs him to appointments, entertains him, stretches him, and so much more.   I don't typically get home until 4:30 with the other 2 boys (who I take to daycare).  And then she always stays and spends some time with Brady and Ryder and helps me get their dinner going.  Most of the time she doesn't leave until 5:30 or 6:00.  Now that is a full day, especially for someone who should be enjoying their "golden years" in retirement!

She also has this wonderful ability to keep me on top of things.  As I am walking out the door, she will usually ask me if I have everything.  She will go through  a list with me, which usually ends with me running back in to grab some diapers for Ryder's daycare.  She will text me during the day to remind me to order Parker's medicine or formula.  She will call me and remind me that we need a few doctor appointments made.  She will send me an email summary of special appointments that I wasn't able to attend or with feedback from Parker's school.  

My mom can still take care of me like I was little.  Sometimes I will come home from work and I can smell an amazing dinner cooking as soon as I open the door.  She will blow it off like it wasn't a big deal by saying "oh, I just had a new recipe that I wanted to try out."  She is always doing laundry!  It seems like no matter how many times I tell her not to worry about it, I come home and there are freshly folded piles of towels and the kids' clothes on the dining room table.  She is my rock and my cheerleader just like she was when I was little.  When I am overwhelmed and to the point of tears because I feel like I am not doing a good job at life, she scoops me up and gets me going again feeling confident and strong. 

The past 3 1/2 years have been the most wonderful and difficult times of my life.  I tell my mom that there is no way I would have been able to make it  through everything (and continue to do so) without her.  She always laughs, and says in an exasperated way, "Yes, you would.  You would be just fine without me!"  But I know differently.  

I know that God gave me the best mom ever and that she is my angel here on earth.  Did he give me this loving  mom because he knew that I was going to be an extra sensitive as a little girl?  Did he give me this strong mom because I was going to be a little wild in high school?  Did he give me this wise mom because he saw that I would have a tough time making career decisions and life decisions as a young adult?  Maybe.  Maybe those were some of the reasons.

But I believe even more so that God gave me this incredible mom because he knew she would get me ready to be a mom to Brady, Parker and Ryder.  He knew that she would be the best care giver to a sweet little boy with special needs.  That she would fill his life with joy and laughter.  He knew that she would make my two "typical-developing" boys feel just as special as Parker.   He also knew that she would be there for me, for us, and that there would be no better person to be called Grandma than my mom.

For this, I am blessed.  Blessed.

Mother's Day 2013

I love you, Mom.  Happy Mother's Day.

 

 

He Tells Me He Loves Me

 *This was written a while ago.  I just found it in my drafts. 

When my Parker was diagnosed with cerebral palsy so many things went through my mind.  Will he walk?   Will he have cognitive ability?  Will he get to play with his twin brother?  Will he be able to shoot hoops in the driveway with his daddy?  Will he talk?  Will he be able to say "I love you"?

Over the past two and a half years of his life I have come to realize that he will be able to do many things.  They may not look exactly like I had in mind, but he can do them.  He does not walk yet, but he is very mobile.  he crawls all over the place with the biggest grin on his face.  His "walking" may be a wheelchair, but I thank God that he will be able to move independently with a power chair.

He may not be able to show his cognitive level by verbally telling us what he sees on a flashcard, but he knows what is on it.  If you ask him "yes" or "no" questions, he can tell you.   He is one smart cookie.  (and one opinionated cookie)

 He does play with his twin brother.  Actually it has begun to be a more common sight in our household.  He will be on the ground heading towards the action (wherever Brady and Ryder are) and Brady will either bring him a toy and lay it out in front of him speaking to him using his soft voice, OR he will tackle him and roll over him with a roar of a lion.  Yes.  He plays with his brothers.

He doesn't shoot the basket or dribble a basketball, but  boy does he love it when his daddy does!  His dad also will help Parker do his own slam dunk, which makes everyone smile.

I think when I first knew Parker had CP, I was more worried about his physical mobility.  That was probably just something that stood out to me.  But now, what is really important to me is that he can communicate and be happy.  I want so badly for him just to be able to talk.  I know that someday  he will be able to form the words that he so badly wants to.  In the meantime, we will rely on his head shakes (for "no") and signing yes with his sweet left hand.  We will also rely on his communication devices.  We have just basic switches right now.  But  there are plans for much more complicated pieces.

 I remember saying to another mom how I wish he could just whisper "I love you Mommy".   Every night I rock him and Brady before I put them down to sleep and I whisper how much I love them.    And in my heart I am praying, "please God, let him say it back to me.  Just this once."  He doesn't.

But the other day, I am holding my sweet boy telling him how much I love him.  And he looks at me with those beautiful clear blue eyes and he coos / goos ( I can't explain the sweet sound) and touches my face with his hand.  HE JUST TOLD ME THAT HE LOVES ME!    I don't think anyone else would hear what I heard.  But it was as clear as day to me.  He said he loves me.

So my son may not walk...yet, and he may not be able to show exactly how smart he is...yet, and he may not get to run around with his brothers...yet, or dribble the basketball yet.   He may not be able to talk yet...but did you hear? 

He does tell me that he loves me!

Slow Down!

One of my New Year's resolutions was to slow down and be in the present.  I have found, especially more so this past year, that I am so incredibly preoccupied that I am missing what is going on right here an now.  My mind is going 100 MPH every minute.  I am constantly thinking about all 3 of my kids and everything in their lives.  (what parent isn't, right?)  If I am not thinking about how messy my office at home (and work) is then I am thinking about the many emails that I need to respond to.  I often think about work because this year has been extremely challenging.  I think about the many medical bills that I am ignoring in my bag that I take to and from work every day.  I am thinking about the fact that we need to find a one-level  house, soon.  I am thinking about Parker's ABM therapy and how we are going to afford it for another year, and how we are going to get down to California for more sessions.  I think about who will watch him next year while I am at work.  I think about what we are going to do for a communication device for him.  I think that we need to somehow fit some aquatherapy back into his life.  I think about how his preschool might not be doing everything I had hoped they would for him.  I think about the fact that we need to start looking into a wheelchair for him, which comes with it another laundry list of items like getting a van so we can transport him, getting a house that is accessible, dealing with insurance, etc.  I think about Brady and if we are providing enough extra opportunities for him to develop into a well rounded young man.  I think about Ryder and how fast he is growing up and wonder if there is some way I could just "freeze" him just like he is.  I think about how maybe we are not teaching our kids good table etiquette because we rarely have "family meals".  (we tend to eat after they go to bed)  I think about how I can't seem to keep up on my household chores and that each week I decide what I am going to skip because I can't possibly fit it all in.  I think about the fact that I need to plan some better/healthier meals.  I think that I need to start running or getting some type of exercise in so that I can be happier and healthier.  And the list goes on and on...

And all of this is going on in my head all day long, unless I really make a meaningful attempt to stop it.   How do I know this is affecting my life?  I often walk into another room and can't remember why I am there.  I often have to ask my mom to repeat what she said because I "missed" it.  I rear-ended someone because I wasn't fully paying attention.  And last, but certainly not least, I ran a red light which I wouldn't have believed even happened if it wasn't caught on video.  I do want to explain here, I didn't run straight through an intersection.  I was actually turning right, and so I did look to my left, but instead of truly stopping at the red light and then proceeding, I did a "California stop" and kind of rolled on through.  One of the pictures is of my looking for cars, so it wasn't totally unsafe.  However, this is an intersection that I drive through 4 times a day to take the boys to daycare.  I KNOW it is camera monitored because I watch the flashes go off all of the time.  I am EXTRA cautious here to always stop because I don't want a ticket.  So, how I actually ended up getting one, is beyond me.  I don't even remember rolling through the red light.  That is scary. What if it was worse and my kids were in the car and I didn't look for oncoming traffic?  I don't talk on the phone while driving, but driving preoccupied is just as bad.  

So, my mantra to myself in this new year is going to be "slow down."  I know, not very creative, right?  I am not nearly as innovative as some, but this works for me.  I might even add an expletive in there like, "slow the hell down," or any other word depending on the occasion. 

This is what I am going to do.  Slow.  Down.  Be in the present.   Will this be easy?  Nope.  When I want to pull my hair out and scream because it is like herding cats to get just 2 of my kids out the door and into the car in the morning so I can get to work on time, I am going to have to slow down.

When I get  home from work, am unloading 2 wild children while greeting another wild one who is already home, trying to get dinner going, and bring in everything from the car, I need to slow down when my mom is telling me about her and Parker's day.  Slow. Down.  (It would  help if my kids would slow down too.) 

When I am at work and I have teachers pulling me one way, a student pulling me another, many emails to reply to, meetings to coordinate and phone calls to make, I am going to slow down. 

When I have Brady screaming at me from the bathroom that he "went poop" or "there's poop in my bum bum"  and Ryder is clinging on to my leg while screaming "mama!" and Parker is vocalizing and reaching for a  toy, I am going to slow down.  I am going to slow down and watch the miracles unfold.  

I will listen. Breathe. Take it in.  Recognize.  Appreciate.  Love.

And Slow the hell down!

ABM Trip #3

October 8-12, 2012

The second biggest stress about ABM therapy (after the expense) is taking the time to go to California.  Even in the summer, when we are not in school, it is difficult because we have 2 other boys and it is not easy to juggle all of that.  But then when September rolls around, I know that I am working pretty solidly through until next June.  When you are a teacher (or counselor in my case) in a school, you can't just take "vacation" during the school year.  Even when you have a good reason and are taking it for medical reasons, which we are, it is not looked upon highly.

Couple that with the fact that I have a new principal and I was very nervous to ask for an entire week off - especially only 5 weeks into the school year.  But I bit the bullet and did.  Now, granted, I don't think they can refuse a family medical leave request, but even so, they were great about it.

So I decided to take off the 2nd week of October even though October 10th is my husband's birthday and the 13th is Parker and Brady's birthday.  I took this week because we had Friday off of work so I only needed to use 4 days of my sick leave.

I took Parker on this trip alone.  I was incredibly nervous because I was flying with him (and ALL of this stuff) alone.  Did I mention that I was alone?  Driving would have actually been easier I think, but I only had to pay $10 for our airfare because of using our airline miles, so I couldn't resist.   We were also planning on staying with my amazing friend Jennifer who happens to have a house in Corte Madera.  So we were able to at least cut costs on the travel fees this time.

The airline gave Jimmy a gate pass, so he was able to walk us through security and make sure we got on the plane safe and sound.  It would have been impossible for me to do it alone.  Not only do I have Parker in a stroller, but I have a car seat (he needs this to be able to sit  in the seat on the plane so I can't check it), his cooler with meds and food, his space saver high chair (has to have this to eat in), 35 cans of his formula, diaper bag, and my purse,   (you see why I was nervous about going alone?)  And because I am bringing liquids - they have to thoroughly search all of my luggage and frisk me.  Now keep in mind that I spent about an hour packing everything in tightly into the backpack so everything would be just right.  They proceeded to destroy my system and leave it a big mess when they were done.  That is ok.  Luckily because Jimmy took Parker through, he didn't have to be searched.  And I get that we need security, so go ahead people, search away.

We had a good flight.  Parker is not too bad of a traveler if you keep him entertained, same as any other 3-year-old.   We landed in San Fransisco and I had requested airport services there to help me with all of my stuff.  And let me tell you, it was amazing!  I would highly recommend this to any parents who are flying alone with their children with special needs.  They were there waiting for me with a wheelchair when we got off the plane.  Parker can't sit in one of those wheelchairs, his stroller is his - so they loaded all of our stuff - car seat, high chair, cooler, backpack, etc. onto the wheelchair and away we went.  All I had to do was push Parker.  We took some very fast route to the baggage claim and he wouldn't even let me get my own luggage.  He grabbed it and rolled it behind the wheelchair.  Then he took me directly to the Airporter which I was going to take into Corte Madera.  So easy!
Tips for parents:  If you are going to request this, be sure you say you need wheelchair services.  Apparently you can request airport service, but unless it is a wheelchair, there is not guarantee that you will get it.  I explained to them that I didn't need the actual wheelchair but they said that was ok.  Another suggestion:  at least at the San Fransisco airport - the people who do this are independent and don't work for the airlines.  So be sure and give them a tip!  It is worth it!   I guess at some airports they are paid by the airline and not allowed to accept tips - but at least you can try.

Parker felt right at home immediately!

My dear high school  friend Jennifer, who was so graciously allowing me to stay with her family for the week, was actually in Paris when I first got there.  So her sweet husband, Patrick, came to pick me up from the Airporter shuttle.   Her mom was there to help with the kids and I loved seeing her.  I felt like I was back in high school again with my best friend's mom taking care of me.  The cool thing is that I am not in high school anymore and we could talk about real life grown-up things.  It was wonderful spending time with her. 

On this trip, Parker was able to see Sylvia, Neil and Anat!  It was great as usual.  I just love the entire staff and their center.  You walk in the door and you are so warmly greeted by everyone who comes through the lobby.  Parker particularly likes Jill.  I think he has a crush on her.  Everyone cares so much about each and every child - it is an amazing feeling.

Neil worked on some great things and of course included his singing which is Parker's favorite thing ever!  He was singing "Old McDonald" and working on Parker's mouth and pretty soon, Parker was singing along with him.  It was so incredible.  I about started crying.

Sweet Sylvia, who was just getting over being sick, was so wonderful with him too.   Even though she could barely talk, she was making Parker laugh.  She worked with him on the table for some sessions and on the floor for others - always doing something different.

Our two lessons with Anat were wonderful too.  Of course Parker wanted music so I played my "toddler tunes" on Pandora during the sessions and she made him work hard.  At one point, he was doing a little bunny hop while standing on both feet.  She talks to him so matter-of-fact.  I just love it!

It was a week filled with good lessons and hanging out with great people.  I loved getting to spend time with Jennifer, her mom, and her sweet kids and husband.  They were the most amazing hosts!  They let me use their car all week long, which saved me on a rental car.  Which also meant that the rest of the family had to ride bikes everywhere they went - which apparently they do a lot of anyway in their sweet little town that I have grown to love.

The Browne House

Parker and Loughlin

Her kids, Louglin and Brian, also gave up their bedrooms so that Parker could have one of his own and I could also have one.  They also were so great with Parker and worked hard to keep him entertained and feeling comfortable.  They did everything from playing records (yes records) for him, to singing to him, to having a full on concert where he was on the tambourine.  I love her children!  What special little souls they are.  

Parker with his instruments

 We had good coffee in the morning and amazing home-cooked meals for dinner.  Not only that, but it was all in a beautiful setting.   We are blessed to have the Browne family in our lives. 

Parker getting love from Jen and Loughlin

The trip home was not quite as smooth as the trip there.  I was actually in tears before we even got to the airport.  Jen had dropped me off at the shuttle and we asked the driver if he would be able to help me (because not only do I have all of that carry-on stuff I already mentioned, but I also have a HUGE suitcase that I need to check).  We even just said if he could radio to the airport or drop us off as close to a curbside check-in as possible that would be great.  He was very gruff and said something like "I am in charge of a 50 foot bus, I am not going to be able to help you."  Jennifer looked at me (with tears welling in my eyes) and said "I will take you to the airport."  I of course said no.  It is a little crazy for someone to go from Marin County to the San Fran airport and then back out again in Friday night traffic.  It probably would  have taken her 3 hours round trip.  So I sat there crying for a minute - gathered myself and got Parker on the bus.  I didn't even notice Jen talking to the driver, and I still don't know what exactly she said - but it must have been good.  Because then he got on the bus, came to me and said, "don't worry, I will make sure you get there."  And that is what he did.  Not  only did he drop us off right in front of the curbside check-in, but he actually brought all of my stuff to the lady there and told her than I needed airport assistance.  He said "God bless" and then left.   Now I would like to thank him for that, and I did - but I really thank Jennifer who was my advocate and who set him straight!

This part got a little comical.  I waited and waited for my airport assistance wheelchair person.  Finally they get there and I get the newby.  That's right, this guy has no idea what he is doing.  NO IDEA!  He also couldn't speak very good English, which I am sure made it  more difficult for him, bless his heart.  At first I felt sorry for him.  He was kind of getting harrassed by the guys in the security line.  They actually said to him, "have you done this before?"  (this is how I know he was new) and he said "this is my first time."  So I have the security line virgin. He didn't lift a thing for me.  In fact, as I was holding Parker and they were searching his stroller, I was helped by many people in line who grabbed my stuff off the conveyor belt and put it on the wheelchair.  All the while, my "helper" was just standing there.  There was a sweet mama who also had a little one of her own and she offered to walk us to our gate.  I smiled and thanked her, but declined her offer since, after all, I had assistance.

Then we ended up going to the farthest point in that terminal - got in an elevator - were down on the tarmac - loaded up in a shuttle bus and taken to the other terminal.  (apparently this airline flies out of both terminals)  So we finally make it to our gate.  Whew!  But then I look at our airplane and we have a little puddle-jumper.  That's right.  We have a tiny plane and it is the kind where you walk out on the tarmac and have to climb the stairs of the airplane.  No biggie, right?  I have done that before.  But not while carrying a child, carseat, backpack, and cooler.  Seriously, I hadn't thought about this before, but how does someone who is in a wheelchair get onto one of these planes?  No handicap access?  Well, regardless, I again am surrounded by amazing people who offered to carry my many items up the stairs while I carry Parker.  We got settled in.  The flight was great and the rest of the trip was uneventful.  We were so glad to see Jimmy when he came to pick us up!  And Parker was glad to be home.

I had to hit the ground running though, because we had family coming in the next day for the boys' 3rd birthday and their party was on Sunday. 

The view from Jennifer's kitchen - amazing!

Parker, exhausted from ABM, is ready for dinner.

ABM Trip #2

So, in my typical fashion, this is a post from 4 months ago!  We took this trip the first week of August, and he has taken two more trips since then.  But I do want to document our ABM trips, so here it is...(will be working on shorter versions of the other two trips soon.)

Our 2nd ABM trip to San Rafael - both Jimmy and I went this time and we also took Brady.  We loaded everyone up and said good bye (tearfully) to Ryder who was staying with my mom.  It was going to be a great trip.  But then, approximately 30 minutes into our trip (we are not even to Salem yet), Brady says "Mama, I want out."   To which I respond, "Honey, we still have quite a ways to go still."  (like 10 hours!)

Road Trip!!

But luckily we get to Medford/Central Point in pretty good time.  We are going to stay with Jimmy's sister for the night and then head down the rest of the way in the morning.  We haven't seen Tina in over a year, so it is great to be able to hang out with her and her husband for the night.  It took us a while to get unloaded and "set up" and then to feed the boys dinner and get them ready for bed.  By the time we had all of this done, they were maxed out and crying pretty  hard.  Couple that with the fact that we put them in a new room to sleep and it is a rough bedtime.  I think they finally fell asleep (after prolonged crying) around 9:00.  Poor Tina and Phil.  By this time, the pizza that they had cooked was cold and even though we told them to go ahead and eat without us - they didn't.  So we all reheated our dinner in the microwave, got a cold one out of the fridge and sat down to refuel.  I am sure that the next morning as we loaded everyone up and pulled out of the driveway both of them sighed with relief.

Brady LOVED their dog.

Good floor time playing a game

We had a good 2nd half of the trip.  The weather was beautiful and we made it in decent time.  We were so excited to have found a hotel that offers a separate bedroom and a full kitchen.  It was a like an apartment AND it was cheaper than the last place we stayed because they offer a great rate for families who are going to the ABM clinic.  This place was perfect!  However, they happened to put us in a great room...on the third floor.  Seems fine, right?  There are elevators so we can get everything up there.  But the elevator was about the size of a refrigerator.  Seriously, I had never seen a smaller, older elevator in all of my life.  We needed to get Parker in there in his stroller and it was a little comical.  First of all only one of us could fit with the stroller in there and that was if we were squished up to the wall.  The stroller could barely get in.  In fact, once Jimmy got it in for me and I was squished in there, I didn't know how to get out when we got to the 3rd floor!  I think I ended up endowing it up and shoving it out.  Besides that one point, the hotel was awesome!  Super nice people, very accommodating, I would recommend this place to anyone and everyone who is staying in Corte Madera.

Brady and Parker making a fort under the coffee table

Playing a board game in our hotel

Neil and Parker

Parker met Neil on this trip and instantly made a connection.  Neil is an amazing singer and we all know that music is the way to Parker's heart.  So he had a new best friend!  It was a good week filled with lots of work for Parker, but lots of playing and relaxing as well.   We were so happy that we were able to bring Brady.  Not only did he have a great time and felt included in this journey, but he got some great one-on-one time with each of us when the other took Parker to his appointments.  This was much needed for our oldest boy who sometimes feels left out. 

Typical day:  We would all go down to the FREE breakfast (loved that) and then I would take Parker to his first appointment.  Jimmy and Brady would eat their breakfast lazily and then head to the pool.  When I got back with Parker, we would join them in the pool, eat lunch, and then they would go down for a nap.  They actually slept because, as I said, there was a separate bedroom and we could make it dark for them.  After nap time, Brady and I would drop off Jimmy and Parker at his appointment and go to a nearby park.  When we were all done with appointments for the day, we went to a fantastic park near our hotel where Parker and I could lay under a big tree and soak up what he had learned that day.  And Brady could run and play on this amazingly HUGE play structure.  We would head back for dinner, get them down for the night and Jimmy and I would watch some Olympics, go to sleep, wake back up and REPEAT!

It was a nice week filled with quality time with both boys and  great learning for Parker. 


Heading home was quite the journey.  We left right after Parker's last appointment on Friday.  We didn't have anywhere to stay in Medford on the way back because Jimmy's sister was out of town.  We knew from past experience that staying in a regular hotel would be insane and no one would really sleep well.  So, we decided to drive straight through to Portland.  We were sure the boys would fall asleep in the car and it wouldn't be that bad of a drive.  We stopped at a park in Medford to have dinner (fast food drive thru) and try to let them stretch and have some time out of the car.  That ended in meltdowns because they were so tired, us throwing our food out, throwing some jammies on them, loading back up in the car (all the while screaming and crying) and getting back on the road again.  They finally fell asleep about 10:00.  Sheesh!

But my wonderful husband drove the whole way and got us home safe and sound at about midnight.  It was so good to be home!

After this trip, we definitely saw little differences with Parker.  He was holding his head more upright.  His hands and legs were more relaxed.  He was again more vocal.  But it wasn't until we went to Hippotherapy again, that we realized ABM was truly making a big difference.  We took the summer off of Hippotherapy because we were trying to save money for the California trips.  But we started up again the first week of September.  Our physical therapist there sent me an email that said this:

Hi Marcy,

 

I just wanted to let you know that Parker was amazing today!  He clearly has benefited from his therapy in California.  I was expecting to use the positioning bolster (which helps to support him on the horse) for most of the session and it was clear within the first 5 minutes that he didn't need it at all.  He exhibited much better head and trunk control and balance then I have ever seen with him before.  He also was using sounds a lot to say "go" and help with the animal sounds of Old McDonald.

 

Since he did so well I am hoping to discontinue the positioning bolster and start to challenge him with additional activities and positions that we help to further his core strength, balance, fine motor and head control.

 

By the way, he also looked great in standing today when he was feeding Blesi.  He was able to stand on his own with only minimal assistance from me.  I will also continue to work on his standing balance off horse as well.

 

It was exciting to see such dramatic changes in Parker.  I look forward to seeing him next week.

 

Sincerely,

Laurie

 

 So we didn't even need to consider stopping the ABM therapy.  As expensive at it is, we are going to find a way to make it work! 

Here are some more pictures of the trip:

Parker Man exhausted after a day of ABM

Having fun at the park

Breakfast time!

Story time!

Getting a cold treat at the park

Love

Speechless

I have to tell you that I am rarely speechless.  I usually always have something to say (which often times can get me in trouble!)    But  I came home from our trip to California for Parker's therapy and found this in my mailbox. 

"Marcy,
 Not sure if you remember me from high school or not - but as you know facebook is a great way to reconnect.  I was so touched by your story with your precious little Parker that I wanted to send a contribution to go towards his medical care.  Our youngest has Chrones and I know the toll it takes on parents emotionally!  I pray for your family daily and send lots of hugs and love your way!  Please put this money to whatever use you see fit for Parker!
                                                      All My Best - Rene"


And I was speechless.

Of course I remembered Rene.  But we were not even good friends in high school.  I couldn't believe that she had gone out of her way to write me a letter and send a generous contribution to a little boy she didn't even know! 

I just sat in my kitchen and cried.  (I know, it seems like I am always crying, right?)  But seriously, this was so special to me.  I have saved the letter and will put it in Parker's scrapbook. 

Rene, if you are reading this (and even if you are not) please know that I am so incredibly grateful and will pay it forward when we have the chance.  You gave me a very special gift, and it was not just the money.  You gave me the gift of knowing that my little man is loved and supported.  You gave me the gift of knowing there is so much good out in the world.  On a bad day (and we do have those), it helps me to remember this.  I hope you know what an impact you had.  Thank you.  I am putting your money towards his next trip for therapy which is next week. 

 I will pray for your family's health and happiness.
God bless.

Our First ABM Trip

We have been back from San Rafael for 3 weeks now.  I have been meaning to write a post but have not had any idea how to put into words what our week was like.  Then I was actually working on this one for about a week, and it seemed to be saving.  It was right in front of my eyes.  But then when I tried to post/preview it wasn't there!!!!!  So I started over and the 2nd time is never as good as the first.  So now I am just rambling about the trip trying to get it all down again.

Here are my ramblings...

To begin with, as we were pulling out of the driveway for our long road trip Parker was already squealing and smiling from ear to ear.  I have never seen him so thrilled and excited.  Was it simply because he was getting to skip his nap?  Was it because he had Grandma and Mom in the car all to himself?  Or did he just know that something good was about to happen?  Either way, he was a wonderful traveler - very happy.  Although I really would  have liked him to get some sleep in the car for his own good, he was having none of it.  No sleep 'til San Rafael! 

We spent the night in Medford which was a nice half way point.  Parker was so over-tired by the time we got there, he ate a little and then passed out on the bed.  This was the only night that it was easy to get him to sleep.  We got up the next day to sunshine and a beautiful day.  We loaded up the car again and headed off to McDonald's for some breakfast and coffee.  And then we were off to Cali!

This part of the trip was quite a bit longer and seemed to really drag on.  But eventually we made it.  We went to the guest cottage that we were going to rent.  It was much cheaper than a  hotel so we were  happy to have that opportunity.  I was envisioning more of a "cottage" and it was more of a "room off of a house".  It was VERY small.  The bed was a futon and the bathroom was the size of a closet.  Both my mom and I couldn't imagine spending a week here.  There wasn't even space for Parker to sleep.  Crap.  So we get out the computer and try to do Priceline to see if we could get a cheap deal at a hotel.  No luck.  We are getting desperate at this point and start calling around.  We end up finding a hotel that is going to be twice as expensive as we were planning to pay.  Crap again. 

So we load everyone up and head out to find the hotel.  As luck would have it, it was actually much closer to the ABM center, and it was nice.  We had to ask for a microwave because we have all of Parker's blended foods that we need to be able to heat.  I had time to get all unpacked and settled in as my mom was feeding Parker dinner.  Ok, we are set.  It is going to be a good week.

Then comes night time.   Now as many of you know, Parker (and the rest of the boys) go down around 7:00/7:30 for bed and they sleep a good 12 hours.  I love this!  I love that they get good sleep and we have some adult time.  The bed time is pretty easy also...as long as they have their own room.  Ummm...we are in a hotel, and he doesn't have his own room.  Crap.

He looks tired...right???

He is also seeing Anat the first day and we want to make sure he has good sleep and is well rested.  This is one time when I really want to make sure he is feeling optimal.  She is $500/hour - he needs to be on top of his game!  My mom and I are feeling very optimistic.  At 7:15 we turn the lights out, close the shades, turn on his nighttime music and even lay down with him.  We just ordered some room service, so that is sitting there waiting for us to eat as soon as Parker goes to sleep.
7:30 - not sleeping.
7:45 - not even thinking of sleeping.
8:00 - having fun squirming around in his big bed
8:15 - crying because he is so tired
8:30 - not crying, but not sleeping
8:45 - having fun getting a back rub from Grandma
9:00 - no sleep

At this point I have eaten a few bites of food and given some to my mom.  I put the rest in the fridge and ended up laying down and falling asleep myself.  Not sure what time Parker finally fell asleep, but it was sometime after 9:15.

This is how it went EVERY night.

Now on to the lessons.
It was a great week filled with lots of positive things.  There is not one big result from it - we didn't leave with him being able to sit up or roll over or talk.  BUT, he is definitely making improvements.  He was so incredibly vocal when we were there.  He actually said "again" two times, just clear as day.  I about cried.  He also started relaxing his normally rigid muscles.  One morning he woke up and actually picked his foot up and crossed his other leg with it (like how a man might cross his legs.)  I have never seen him do that.  Usually both legs are straight and stiff.

Parker loved his therapists.  We saw Sylvia who is just this amazing woman who's soul is as strong as her accent.  Parker thought she was so great.  He really liked it when she sang to him and made up new words to "Wheels on the Bus".   We also saw another therapist, Chris, who was great.  And then of course we saw Anat, the creator of this technique.  Unfortunately, we saw her on the afternoon of the first day there.  So Parker was pretty burnt out from travel and  had not napped in 3 days.  She (and all ABM practitioners) are very sensitive to the needs of the child, so she didn't want to push him and work with him for too long.  Please keep in mind...we paid $500 for that hour.  In my mind I was willing Parker to just cooperate and keep working.  She did work with him for a little bit, but he started to get fussy.  So of course she asked him if he was hungry and he signed "yes." Super.  Now she is looking throughout their building for something to feed him.  She tried guacamole - nope.  Then she found some apple sauce.  Yes - he liked that.  So we fed him some of that while she talked to us.  Then she said, "he is done."  My mom and I exchanged looks like "WHAT?"  I told Parker that that was the most expensive snack he has ever had.  Luckily we did get to see her later that week and it was great!

Parker enjoyed this therapy more than anything I have ever seen.  In fact, when they were done each time and I would pick him up, he would cry or get fussy.  He wanted to stay longer!  And while he was there he worked so hard.  I could see the focus and energy in his eyes.  It was so great!  As I said before, he became so much more vocal while there.  He was "talking" most of the time on the table.


The hard part is realizing that we need to continue to go down to California for the treatments at a more regular pace.  Anat recommended that we come down every 6 weeks.  This is so difficult because not only is it expensive, but Jimmy and I both work full time.  It is not easy to take a week off every 6 weeks even if it is for medical reasons. 

Chillin' after a long day.  Look at those relaxed legs!

Breakfast by the pool

These sweet little animals came to visit us outside of our hotel window almost every day.  There were 3 adults and 2 babies.  So sweet!  

I also realized that one of my best friends in the world lives right here in San Rafael.  I didn't even know it!  She hosted us for a wonderful evening on her deck with an ice cold drink and a home-cooked meal.  It was wonderful!!

One day we decided to take in Muir Woods National Park.  It was breathtaking...until Parker had a complete meltdown.  Not sure what happened but he was inconsolable.  I thought we were going to be asked to leave, so we just decided to leave on our own.  I carried him out, crying the whole way (him not me), while people stared at us like we were kidnapping him.  Sorry we spoiled the tranquility folks.  Have you never seen a crying child????

 Parker may have not been a big fan of the woods, but he LOVED the pool.  One evening we found this pink floatie and he was kicking his legs and loving it.  He didn't want to get out.  Unfortunately, all good things have to come to an end, and we did get out, pruned hands and all.

King Parker

 

I am not sure how we will manage this therapy in the future.  It is so overwhelming to think of what he really needs.  But I have decided that we need to commit to this for at least a while to see what kind of results Parker can get.  We are heading out tomorrow for our 2nd trip down there.  Jimmy will be coming this time and we are bringing Brady as well.  It is going to be great!