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! 

Gratitude

Gratitude.  Sincere, from the bottom of my heart gratitude.  That is the only way I can describe what I am feeling after last weekend. 

As you may have read on my last post, we had decided to do a garage sale to  help raise funds for Parker's ABM therapy.  I am so blown away by the results that it is very hard to even put this all in writing.  But I need to tell everyone how amazing it was.

As I said before, we had the biggest outpouring of donations.  There were people from my husband's school, people from my school, family, friends, even people we didn't know were bringing items to our house to donate.

It all started (thank goodness) with my aunt and cousins coming by to do a "pre-shop" on Thursday night.  They couldn't believe all that we had.  I am not exaggerating when I say that our garage was filled to the ceiling, our front living room was full and our driveway was half full.  We had planned to just get up early and get it all set up.  My aunt looked at me with her eyes wide and said "Really???"  Jimmy and I looked at each other and decided that we better just pull an all nighter and start getting things out right away.  Good thing she snapped us back to reality because literally, we worked from 8:00 PM to 9:00 AM the next morning and we still were not done.  I did take a nap from 3:30-5:00AM because I was delirious, but Jimmy stayed up and kept working.

Toasting to the start of Garage Sale Extravaganza!

    

The next morning when the sun came up, our house looked like a HUGE flea market filled with lots of treasures.  But that is not the incredible part.  The incredible part is all the people who helped us.








These are the people I really want to tell you about:

• The staff at my school: Kiki, Adam, Jennifer, Rhonda, Alix, Stacey, Brittany (and her mom Lynn), Kendal, Sue, and all who donated items. 
• Becky Loo who didn't have time to donate items so instead she wrote me this note with some money.  (she is far from a slacker!)
• The staff at Jimmy's school, Terry and Kristen, Karen, Sarah, Joe, and many others for all of their help and donations
• Dave and Sharon who helped, donated, and spread the word

• Doug, a friend of a friend who we did not know, delivered a huge load of wonderful items to us on Thursday afternoon. 
• Leroy, a man walking his dog in our neighborhood (again someone we don't know), learned about what we were doing and came back with his son and donated a practically brand new Foosball table.
•  Ben, a boy who was probably 9 or 10 (don't know him), when he asked me how much a bear was, I told him $2.  He said "I won't give you less than $5."  His mom was also just as amazing as she paid me $10 for some kitchen gadget.  Are you kidding me people?  
• Ed and his wife Karen, neighbors from down the street, came down and gave us a check.  They didn't buy anything - but wanted to donate.  I gave him any remaining coats we had for a coat drive that he does every year.
• Another friend of a friend (who we didn't know) brought by 2 loads of items to donate.  She sets up model homes, these items were NICE!  
• Two different parents from our school district - Trina had her sweet son Ian deliver 2 bikes (nice!) and some other great things.  And Bob, another parent, brought me a load of his wife's clothes.  His lovely wife, Katie and another teacher, then also brought me a 2nd load of clothes the next day.
• Brad and Tammi, a couple we have never met, pulled up and gave us $20.  Then they shopped around and bought (overpayed) $60 worth of extra stuff.  Tammi also suggested asking people to donate airline miles and offered me hers.  Did I mention that we don't know them?
• Remember Doug from above?  He came BACK with his 2 kids (one who they are sending off to college this year) and he donated another HUGE load including a full weight set and bench, antiques, a Lane Hope chest, and so much more!
• Our past nanny, Amber and her husband Shawn, they are a young struggling couple themselves with brand new twin baby boys.  They bought a few things and wrote me a check for $50 and on the check wrote "for Parker".
• Another cool girl who works at Peet's Coffee in Bridgeport.  Young, just got a place and I am sure struggling to make ends meet herself (because weren't we all at that age?) - and she gets a few items.  She asked me how much I wanted for it all and I add it up in my head and say "$20?"  She said, "how about I give you $30?"  Now you know that NEVER happens at a garage sale.

Our incredible neighbor, Jennifer Logan.  She has always been so sweet to our family, but we have never had a chance to really get to know her and her family very well.  That changed.  She came over on Thursday night as she saw Jimmy and I working to set things up.  She said she would come help us the next day.  And help us, she did!  She was at our house Friday  morning at I think around 6:30 AM (not exact on times because the past 3 days have been like Ground Hog's Day - just kept doing the same thing over and over again.)  She did not leave until around 8:00 PM.  She was pricing and setting things  up and wheeling and dealing and telling people about Parker.  She was AMAZING!    Then on Saturday and Sunday she was again helping us ALL DAY.  Her sweet daughter, Rachel, was also helping us by either entertaining the boys or going on a coffee run.  Her husband, Matt came and helped us set-up and break down.

Our other neighbor Nancy, who I had never officially met, came and helped us for 2 of the days.  She also stayed out there all day, pricing, talking about Parker and helping sell items.

Of course, as any of you who read my blog know, my wonderful mom was here also all 3 days taking care of the boys.  She was here by 7 AM everyday and didn't leave until around 7 PM.  And our house was chaos so this was no easy task.  She also cooked us dinner, brought us breakfast, and got some much needed groceries for us.  My Dad was an amazing helper as well, bringing tables and doing the heavy work!

The way that everyone pulled together for this fundraiser was so amazing.  I don't even have words to describe it.  But I am so grateful.  There was such a a sense of community and love from everyone.  It was very powerful. 

This is just a sampling of the wonderful stories from the weekend.  There were so many more and with each one, I was moved to tears.  I have to tell you, I was a teary-eyed mess.   I am sure the lack of sleep and food made me a little more emotional, but this weekend was deserving of some tears.  (of happiness)  And while there were some brief tears of sadness and horror (when the tent broke at 2:37 AM), the good by far outweighs the bad. And although we still need to pay to fix the tent,  we made our goal!  We will be able to pay for one of our two trips down to San Rafael for Parker's therapy, and we leave on Saturday!

Brady taking a test drive.  It was hard to let this one go.

 

Day 3 of the sale...almost done!

What was left...

 As a parent of a child with special needs, there are times that I feel alone and isolated.  There are times when I feel like no one else could possibly understand, and that often times people don't want to.  And while I try to stay very positive and thankful, I am far from perfect, and there are some times when I just get pissed off that Parker has cerebral palsy.  I forget to be grateful.


Not so this weekend.  We were not alone or isolated.  In fact, we were surrounded with love and the support of so many people, many of whom we didn't even know.  All of these people may not fully understand our life, but they were there to be a part of it and support our little man.  They were there to say, "Good luck," or "God bless", or "What can we do?"

And for that, and so many other reasons, today I am grateful...

Thank you.

 

For each new morning with its light,
For rest and shelter of the night,
For health and food, for love and friends,
For everything Thy goodness sends.
~Ralph Waldo Emerson