Welcome

Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Wednesday, August 17, 2016

Back to Reality

We are back to Arizona and back to “normalcy” (whatever that means)!  Things didn’t go as planned this summer but I think they went as God intended.  We ended up having a really good summer (minus the few hospital days) packed full of friends, family and fun.  In fact, so much fun that the kids were completely bored returning to the 115 degree weather here in Arizona.   They are constantly asking to go to, “more fun places” and “what friends are we going to see next”?  I knew we were spoiling them but knowing what next summer is going to be like, I wanted to make sure that Coleson especially looks forward to going to back to the “blue house”.   

 

The kids are back to school, Peyton in 1st and Coleson in Pre-K.  Coleson loves to go to school while Peyton tolerates it.   The song, “Girls Just Wanna Have Fun” was written for her.  She can play hard all day long but going to school for 7 hrs. is not much fun (except for recess/lunch times).  I try to remember what I was like at her age and life was very different for me at age 6.  It always is from generation to generation but at the age of 6 my mother had been gone for 2 years and my dad had just met Aggie. I can tell you my life was not about going to “the next fun place”.   Both kids have decided to focus on gymnastics this year and rock climbing for Peyton.  Peyton and I were watching the Olympic Gymnastics and swimming events and I asked her if she thought she could do that one day.  True to her big heart she said, “If I were beating someone, I would stop to help them so we could both win”.   She is going to be the best kind of friend.  With her big heart though comes big sadness when saying goodbye to friends and family or getting her heart hurt easily and I dread her teenage drama years. 

 

Coleson has rebounded from surgery and is becoming just as dare devilish as Peyton.  He wants to go on roller coasters and water slides, he’s flipping into the pool.  This makes me more nervous because he doesn’t understand his limitations yet...which is good in some ways but not so good in other ways.  He makes me nervous for Kindergarten when he is with a bigger population of kids.   He is enjoying gymnastics and school and is doing quite well in both.   We have a few appts. coming up, his repeat sedated MRI to see if his surgery was successful and if he will be approved for next year’s surgery as well as ENT.  We can never get a good audiogram on him since his ears are constantly draining from his tubes.  I know the ENT wants to remove his adenoids but I am really trying to prevent another surgery.  I’m hoping as he gets bigger the drainage will reduce in his ears.  He went through a bout of ear infections before we left for Minneapolis but now they just drain occasionally.   Otherwise all of his other appts. went well.  Cardiology said she wouldn’t even have known that his heart was a “Hurler heart”, and pulmonary went well too.  Ophthalmology said his eyes are holding steady with a slight near-sidedness, retinal atrophy and astigmatism, but as long as they are stable he is doing well.  He is still 100% engrafted with donor cells at 3 years out and I expect will remain unchanged.  He is developing at a more age appropriate level in almost all areas but is still behind in gross motor skills (the test doesn't ask about flipping into pools!) so we need to continue with therapies.  They also mentioned we need to work on his attention span and focus so it doesn’t start to impact his schooling.  His spine looks great with only a 17% kyphosis in his lower back and his neck still looked really good (minus the cyst in his spinal cord).  All in all, we received very positive results in almost all areas.  Most Dr.s said they did not need to see him again next year which is good because it is going to take all we have to make it through the pelvic and femur surgeries and I don't want any additional stress on him. 

I turned 1 year older this summer and got to celebrate it three times, 1x in MN, 1x in MI and 1x in AZ.  I think it's official now!  Paul has resumed working on his corvette and parts are actually starting to go back into the car as opposed to out.  Soon tires will be put back on and it will sent out for nice new paint job. 

 

As mentioned, we had a great summer full of friends, family and fun in both Minneapolis and in Michigan.  I appreciate and thank all of you who came to visit, had us over, took us out, let us store stuff, just had fun with us.  We didn’t get to see everyone we intended to see as we still have to work while we are there.  We really missed seeing some of our other BMT family that we typically get to see but we did get to spend some time with some other Hurler families this year and that was nice too.  

 

We are about to kick off the busy Fall season full of holidays and birthdays.. more fun times filled with friends and family.  Thanks for being part of our journey. 

Sunday, June 5, 2016

Surgery, What Surgery?!

For those of you on Coleson's Facebook page, some of this will be repetitive, but I tend to be more detailed in my blogs than I am on FB.  For those not on FB, I apologize for the lack of updates.  I actually tried to post on Thursday but blame it on the lack of sleep, that I wasn't successful.




You would never know by Coleson's behavior that just 5 days ago he was in a very risky and lengthy surgery!  Aside from the stiff neck and the stiches (roughly 30) that resemble Frankenstein, he has not once complained of pain and has been running around playing since Thursday when he was released.  Yes, he was released on Thursday morning, a full 2 days earlier than expected much to his delight and amazement from the surgeon and his physical therapist.  I'll back up a few days for you all.




Surgery, Suboccipital craniectomy with C1 laminectomy and dural splitting (trying saying that 3 times fast!), went extremely well, just as it was supposed to.  Coleson was both scared and mad to awaken to all the IV lines in his hands/arms and feet and promptly starting requesting they be removed.  We had a bit of a scare on Tuesday night as he was striderish meaning his airway was swelling from being intubated.  They had to administer steroids to reduce the swelling.  By Friday morning he was breathing good but had a "silent seizure" where his heart rate dropped and he was unresponsive.  My heart rate did just the opposite as I pleaded with him to say something.  It lasted only a minute (but to me it seemed like forever) and came out of it.  They thought it was due to coming off the sedation meds and fortunately he did not have any more.  He drank a whole bottle of ensure for me and after a couple of hours of being stable, they started removing most the IVs and moved us to the recovery floor.  Oh the memories of being cooped up in these rooms for months during transplant.  Fortunately the Children's recovery wings are new (I'd say 5 years old) and they are very nice...for hospital rooms.  After being stable for a few hours on the recovery floor they removed the last IV, he still had his port accessed and a big bandage on his arm where his arterial line was.  He was fairly cranky until Peyton arrived to cheer him up with Ninja Turtle Playdough.  His whole demeanor changed as they played together.  About 6:00pm,  his physical therapist asked for us to try to get 30 minutes of unsupported sitting that night. So at 7:00, we asked if he wanted to sit in his special blue chair, which he loved to sit in when he was here for BMT.  He sat and played with us for about an hour and then he was feeling frisky and wanted to stand up/walk.  He needed to get weighed anyways so we walked him over to the scale.  He didn't stop there, we opened up his door and walked up and down the hallway.  This lasted for another hour for a total of 2 hrs of unsupported (neck) movement.  I was feeling confident that we may get released a day early at this rate.  He had only been on Tylenol for pain most of the day.




He was adamant he was not going to sleep in the hospital bed that night (it's too scary) and fell asleep on the couch (my bed) a little after 9:00.  After allowing what I hoped was enough time that I could move him without waking, I picked him up and laid him down on the bed...I didn't wait long enough!  He began to get upset and I laid with him for another hour about no more pokes.  The thing about sleeping at a hospital is they have to come at shift change and do vitals and then again at 4:00am. (A practice that is being challenged by the medical industry as being disruptive to the healing process and I hope gets changed in the future).  At this point any single type of status check was scary to him and he know if he was in that hospital bed, they would be in to touch him.  He stayed asleep until 3:00am when he woke and cried for me.  I promptly moved into bed with him again and had another 1 hr. talk about  how scary the hospital is and his "inside" owies and that he was done with the hurt part and he just had to get strong enough to go home.  I called the nurse to come do vitals early and give him his meds since he was awake and I could help him through it.  I had just gotten back to sleep it seemed when he woke for the morning at 6:00.  "Is it daytime?" he asked, he knew day time meant possibly going home, even though I knew we had at least 1 more day.   He was again pretty cranky, not wanting to do anything but go down the elevator... "go down 2 elevators mommy", he says, knowing that it takes 2 elevators to get to the car in the parking garage.  "No up elevators", he's too smart!  Daddy showed up at 8:30 and somehow convinced him to get out of bed and walk the hallways.  Within 30 minutes, the neurosurgeon saw him walking around and with a look of surprise asked if was ready to go home which Coleson promptly answered, "Yes!"  Paul said the physical therapist also did a double take when she saw him and was amazed he was up and walking.  It was Coleson's sheer determination and fear of the hospital.  He was not about to stay in that hospital any longer than necessary, and I don't blame him.  I too was exhausted from 3 nights of no sleep and anxiety and wanted to get home too.  Paul says it was all his and Coleson's plan as he knew it was Paul's night to sleep at the hospital.  At any rate, he was a free man and he returned to his normal happy self.  He even said to my friend Nicole who had stopped by to see us and helped us carry our things down to the car, "Thanks for riding down the elevator with us and thanks for carrying our bags".  Where did that come from?! 




Since returning home, he as been as joyful and funny as normal.  He has not slowed down at all and we spent all day exploring the train museum and science museum on Saturday.  It was rainy so a good museum day.  Today we went to Nicole's for lunch and friend time.  Then we stopped for "Izzy's Ice Cream" an awesome ice cream joint near our place which reminds of our good friend Issy from Phoenix.  Then to Choo Choo Bob's for some toy train play time.  Even after all that he was not ready to come home but after too full days, Paul and I were ready. 




We return to somewhat of a normal life again, we have all his usual appointments to contend with over the next several weeks but the only one that will require a "procedure" is the EKG.  I would ask them to skip it but with my own heart condition, I can't risk it.  Otherwise, they drew all the blood they required (which is like 13 vials) and I asked the spine surgeon to get the scans from Dr. Walker.  Us Hurler parents get to be pretty savvy at "combining" and "reusing" tests for his other specialists. 

We have a couple Hurler family friends arriving this week and will try to see them as well. I'll update again as we get through the upcoming appts. 




I can't thank everyone who supported us over the past 2 weeks.  It makes such a big difference, I can't even put it into words.  A simply Thanks doesn't seem enough but that is about all I can give as well as letting you into our personal world. 
Paul says' Chicks will dig this scar when he's older!  This chick hopes it disappears!

Wednesday, June 1, 2016

Quick Update

Surgery went well and after 7 1/2 hrs., we were able to see him again.  He's in pain, swollen in the neck from the intubation tube and neck from the surgery.  His airway started to close a little last night so we were watching him closely but he's paste the worst of it now.  He's scared mostly as he's worried there are more pokes and owies to come.  He's got IVs in both feet and one in his artery in his right hand which is boarded up to protect it.  Hopefully we'll get released from the PICU today to be moved to the general surgery recovery floor.  We are watching Team Umi Zoomi (reminiscent of BMT days) and he drank a little apple juice.  I'll post more details later.   

Thursday, May 26, 2016

New Surgery, New Plans, New Attitude

HOne of the hardest parts about this process is the complete loss of control over the well being of your child.  You get hit with this overwhelming information, just enough to fill you with anxiety but not enough to put all the plans in place or put you at ease.  Once you have all the information you start to take comfort in the "game plan".  I feel like that is where I am at today. 


We met with the neurosurgeon yesterday.  There was no denying once he threw up the pictures of the MRI that the cyst exists and is big.  Even to my untrained eye I knew immediately where it was and that it was big (I'm sure you will see it too in the picture below).  He explained the root cause of the cyst was due to a malformation of the skull which creates a "pooling" of spinal fluid in the base of his skull.  This in turn creates and imbalance of fluid flow along the spinal chord and brain.  Think of it as a river, and his skull in creating somewhat of a dam which affects the rest of the flow of the river (aka his spinal chord) which causes other "pools" to form along it.  Fortunately it is only the 1 and there are not others.  Bone malformation is one of the most common Hurler traits and is the reason for the hip surgery.  Hurler Syndrome is a "storage" disorder meaning substance (called gag) that should get processed and expelled by the body rather does not and instead stays in the body in places where there is room, mostly the joints.  Because this gag material is sitting in places where bones would normally develop, it causes the bones to develop abnormally.  It is a total body affect but each Hurler kid's bones develop different depending on where most of the gag goes in the body and in Coleson's case it had a big affect on the skull. 


It is big enough that they need to address it.  To fix it, they have to break down the dam so to speak.  So next Tuesday, the 31st, he will have surgery to remove some bone at the base of the skull  which will allow the fluid to stop pooling in the skull which naturally (over the coarse of a year) should reduce/eliminate the pooling in the spinal chord.  It is too dangerous to do surgery on the cyst itself as that would be require surgery on the spinal chord.  We will be back at the University of Minnesota for this surgery so back to our normal stomping grounds.  I asked if this surgery could be combined with a new port placement and was happy at least to hear that it could be and in fact is scheduled with the same general surgeon who put in in his central line 3 years ago.  It does mean another 6 hr. surgery and 4 night stay in the hospital but at least he will walk out of the hospital.  We have some follow up appts and MRIs over the next year but we should be able to plan the hip surgery for next summer. 


Though I was hoping he would not have any more "Major" surgeries after the hip surgery, I guess, technically, this isn't after the hip surgery.  It is unexpected and a risky procedure itself, but it allows Coleson another year to comprehend the hip surgery which may not be a bad thing.  It does mean another traumatic and scary experience for Coleson however and though I was hoping as he got older, he would just "get used" to all the pokes, prods, medicines, IVs, X-rays, EKGs, MRIs, echos, blood pressures, pulse ox..... you get my point, I think he is getting more afraid of them.  We will have to take extra care in tackling each procedure as simple and nonintrusive as it may seem to be. 


So we have some re-arranging of plans left to do but it also allows us to get home around mid-July instead of at the end of July so that we can get settled before school starts on August 1st. I do believe that everything happens for a reason, so while I still don't know the reason why kids are born with such difficulties, I do believe we were not yet ready for the hip surgery and needed another year to prepare.


After the appt. yesterday, we all went to Mall of America and spent 6 hrs. riding rides.  Paul and I even got to ride the adult rides for once since Grandma was with us watching the kids.  Peyton is still not big enough to ride those yet but maybe, just maybe by next year she will be.  She can't wait.  Coleson too loves the excitement of the stomach turning rides and unfortunately will have quite a few more years before he will be big enough to ride them. 


So think of last Tuesday as a trial run for this Tuesday and next year.  The outpouring of support has really kept me going these past couple of days and I cannot thank you all enough for that. 
The white is the pooling fluid and the "dam" where the skull meets the chord.


Tuesday, May 24, 2016

It's What's on the Inside that Counts!

I was hoping to start this entry with news of a successful surgery today but as one Hurler mother recently said, we need to be prepared to expect the unexpected.  I thought I had accounted for the unexpected by reserving a house for the summer but nothing prepared me for the events over the last 24 hrs. 

We had a relatively uneventful first couple days getting settled here in our temporary home.  Our place is nestled in a very nice neighborhood with a park 3 blocks away.  Our landlord is very accommodating and has a girl close in age to Peyton who only lives 1 block away.  Dairy Queen and a very nice local grocery store are within 3 blocks, the river across the street.  The weekend weather was gorgeous and without the distractions of every day life, we actually were able to relax on Sunday. 

The knots in my stomach didn't start to occur until we were on our way to the pre-op apt on Monday.  Coleson did well during the Child Life discussions and started out being a big boy for the x-rays but after 3 of them started to melt down and I had to help him through the other 4 or 5.  Our consult with Dr. Walker went really well and I was actually feeling very confident about the surgery.  The last item of the day was to get labwork.  We started off in the lab, which we found out could not do lab draws from his port.  We have not tried an non-sedated blood draw since he was first diagnosed and didn't even want to try.  So we went back up to the Dr.s office for a nurse to do the draw.  After about 15 minutes and several  pokes and prods, they were unable to get a blood return from the port.  There must either be clotted blood around it or a collapsed vein, regardless it needs to be replaced.  Next they brought in a PICU nurse to try an entry into a hand or foot.  By this time, Coleson had already had enough and even with 4 us holding him down, the nurse could not get a needle in a vein in either hand.  So they called in "Dee Dee" who for sure would be able to do it.  So again with the attempts but now on his feet.  Again we all had hands and legs secured and he was lying in my lap with me shielding his chest holding his head and he still wiggled and whaled rendering any attempt useless.  For a 4 year old with Hurler's he has superman strength!  We had to get the blood draw so they could get the right kind of blood (with the proper antibodies) prepared for today's surgery.  So Plan D was to use nitrous.  After 3 hrs and with the help of nitrous they finally got enough blood.  It was a horrible experience and not the way I wanted to start this surgical procedure. 

Today actually started off better, except for the complete lack of sleep for me, Coleson didn't mind the 5am wake up call and immediate bath with the special soap (which we also had to do last night as well).  He didn't start to get nervous until we were in the parking garage and refused to get out of the car.  However, once we got into the waiting room and play area, he was OK.  He was even OK up to the point that they masked him for his MRI.  Prior to the MRI, Dr. Walker said based on the X-rays that he consulted with a neurologist and they thought his neck was strong enough to perform the surgery as intended, with the femurs being done while he was facing down on his belly and then the hips with him lying on his back.  Last night we had talked about doing the entire procedure on his back, though a little more complicated for the surgeon, less risk for the patient.  This I felt was actually good news and was looking forward to getting this behind us.

We didn't receive the bad news until Dr. Walker came out after the MRI to give us an update.  I knew something was wrong when he wanted to talk to us privately.  He reassured us immediately that Coleson was OK but that the MRI revealed a cyst at the base of his brain on his spine.  This cyst was putting pressure on the spine and it would not be safe to perform the surgery.  The cyst, though currently was presenting no signs it was there externally, would need to be taken care of before it started to effect his balance and cognitive ability.  The next hour was overwhelming and all I wanted to do was to hold Coleson again but they wanted to perform more MRIs to ensure there were no other cysts.  Fortunately there was no more.  But now we are facing another surgery, plus we need to get the port replaced and who knows what will come of the leg/hip surgery. 

On the outside you would never know that Coleson even needed any surgery.  He climbs like a champ and even started doing flips in the pool.  He is super smart (ask him anything about the planets) and his communication is even maturing.  His latest IEP was good in every area.  But on the inside, you never know what exists and with a Hurler kid, it could be just about anything.  It's a total body condition and each kid presents differently.  So, another challenge for us and for him.

Two of my closest friends sent me this same message (separately coincidentally), "You never know how strong you are until being strong is the only choice you have."   I have never had a choice to be strong, it started when I was 4 and lost my mom.  I feel like life has challenged me in so many ways  it is the only choice I have and I will continue to be.  I've said this before but it remains true, I can only be this strong with the love and support of friends and family and yet again, you all pulled through for me today.  Our appt. with the neurosurgeon is tomorrow (today by the time you read this) and I'll hopefully have a better idea of what our new plans will be. 

Continue the prayers and wishes and this truly is hard on Coleson who knows enough to be scared but not enough to believe everything will be OK.  I really am concerned for his mental well being along with of course his physical well being.  I'll update as soon as we know more. 

Tuesday, May 3, 2016

Help Support MPS Research with Triple Match Now - 3 Weeks til Surgery

Its 3 weeks and counting until Coleson’s surgery.  Each day brings more and more anxiety.  I recently learned that a young girl who had the same surgery as Coleson cannot feel anything from her chest down.   Her surgery was more than 10 days ago.  This is the risk/reality that we face when we send our kids back to the operating room and wait for 6-8 hrs. and then even longer for them to wake up from sedation and try to wiggle their toes.   My heart sunk when I read the update and I cannot express the sorrow I feel for Brynlee, her brother and her parents.  I know they have not given up hope yet that she will regain feeling and so if you feel so inclined to pray or send a good thought to them, I know they could use the support.  There are quite a few families having the same surgery this summer, but I think Coleson is the next in line, and I know all of us are diligently waiting for updates as each one occurs.   Brynlee’s mother posted a saying, “Sometimes the best thing you can do is not think, not wonder, not imagine, not obsess.  Just breathe, and have faith that everything will work out for the best.”   If she can live by this, then I should be able to as well.

 

With that said, there is a great opportunity to support MPS research (something that doesn’t get a lot of attention) and have it TRIPLE MATCHED.   If you ever have thought about donating to MPS Research this the time, triple matches don’t come often!  Triple Match ends this Saturday.

               
Donating to #TeamMPS is easy! There are three ways to help us reach our $50,000 goal. Remember, all donations are triple matched, so a $10 donation becomes $30!

  1. Text the word "courage" with a donation amount to 41444.
  2. Donate through Penn Medicine to #TeamMPS. -  This is the best way so you can learn more about MPS and this
  3. Donate through PayPal.
     
    May 15th is MPS Awareness Day.  So please wear your purple in Coleson’s honor.   I’ll be updating this blog frequently over the next several months as we climb this next mountain.
Here is a flashback from 3 years ago of Peyton Singing the "Brave" song for Coleson during BMT.

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Wednesday, April 20, 2016

The Countdown Begins (30 days & counting)


30 days until we leave for Minneapolis and 34 before Coleson has his surgery (May 24th).  Coleson will be having 4 surgeries in 1, double pelvic and double femur osteotomies.  The pelvic osteotomy is to correct a “shallow” socket that if left uncorrected will eventually lead to the femur “ball” slipping out of socket.  The femur osteotomy is to correct the alignment of his femurs into his hip socket.  Two surgeons will operate on him at the same time and the surgery is expected to last ~6 hrs.   It is a high risk surgery and one that all of us hurler parents dread, though almost all hurler kids have to have it done.  It is high risk as they are cutting into the femur (which is where bone marrow originates) and so there is potential for lots of blood loss.  In addition, there is potential for nerve damage due to the length of the surgery and the short necks and spinal curves our kids.  Needless to say, I will need all of your thoughts and prayers that day (May 24th) as it is an excruciating wait.  Feel free to send texts/facebook posts/emails, etc. that day as it will be a good distraction from staring at the clock.  He is expected to be in a spica cast for at least 4 weeks and then we start physical therapy and rehab.  We are planning to stay in Minneapolis for the summer just in case anything goes wrong  and to ensure he is well on his way to recovery as well as go to all the other annual appts.  So Minnesota friends, we'll be in touch.  I hope to get to the office there a few times as well. 

 

Otherwise we have been enjoying the winter/spring here in Arizona relatively healthy.  Coleson has been battling chronic ear infections for the past 2 months.  We went to a new ENT and he suctioned out the blockage in his ear tubes.  Hurler kids tend to have thicker ear secretions and the antibiotic drops weren’t able to penetrate through it to clear up the infection.  Coleson didn’t like the suctioning at all but I could tell a noticeable difference in his behavior afterward.  He is a happy go-lucky kid in general but he was even more spirited afterward.  The ENT did plant that seed that we may need to look at removing his adenoids.  I am not in favor of having any unnecessary surgeries so hoping this won’t be necessary.  Peyton too has been fairly healthy with the exception of a cold/ear infection that happened to occur when my sister and niece were visiting.  I haven’t had any major ailments lately myself (knock on wood) however Paul came down with a serious case of bronchitis a couple weeks ago.   He was in bed for several days and we even took a trip to the ER.  by habit I almost drove to Phoenix Children's hospital.  It's been a long time since I've had to go to an adult ER!  He is still recuperating but is expected to feel the effects for another couple weeks.  Had a bit of a scare last week when Rachel called me from the park to say that Peyton fell off the monkey bars and wasn’t moving.  Luckily I had just taking a CPR and first aid class and was able to run through the checklist to assess the situation.  Fortunately she was breathing, just needed to calm down, and she didn’t have a concussion, but did have a sore back for a day or two. 

 

We have been enjoying the warm weather, plenty of pool time, gymnastics and dance.  I took Peyton on her first hike with some good friends and after our second hike, I think she has had enough.  Just not exciting enough for her… she takes after me, I’d rather be on a bike on a mountain rather than my legs.  Speaking of bikes, Peyton is proud of her newest accomplishment, riding her bike without training wheels.  She didn’t like riding it much with the training wheels so it didn’t get a lot of use. One day she got on a neighbor's smaller bike without training wheels and figured out she could do it. So we took them off her big bike and away she went!  The bike gets a lot of use now.  She has even rode it to school a couple times.  Coleson continues to be a climber, climbing anything and everything including the pantry and his closet to pick out his shirt for the day.  He is particular in what he likes/doesn’t like and that includes what he wants to wear.   We took the kids to a place with warp walls and trampolines and he did great!  He even somehow got up on the big warp wall (perhaps someone helped him).  He escaped the "6 and under" area without me knowing and when I couldn’t find him, my eyes raced around the gym and spotted him way up at the top of the big walls.  I really hope this surgery doesn’t set him back too far.   He is so adventurous and agile, it’s hard for me to think in just 1 month, he will be in a cast and wheelchair. 

 

I’ve been trying to stay as healthy as possible with my eating and my workouts. I’m been trying to get to Yoga or Zumba 4-5 times a week.  Paul can “handle” the kids now at night on his own so it allows me to get to the gym.  It’s amazing how much better I feel and how much more energy I have.  The kids have starting waking up earlier than usual (not sure why) and fortunately I’ve been able to adapt.  It’s amazing how much more I can accomplish with an extra hr. in the morning. 

Lastly, I took 66 lbs. of pop tabs to recycling this weekend for the RMH.  This is in addition to the nearly 100lbs from last fall.  The RMH will certainly appreciate this donation.  If anyone else has any pop tabs, please let me know. 

I'll probably be publishing some frequent updates for the summer as we tackle this next journey.  Thanks for reading!    Here are some recent pics and videos.




 




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