Feltslave = Retired

Moved = http://stokepoges.blogspot.com/

See you in the trails.

Liah - Updates (moved to Mass General Care Pages)

Moved the updates of Liah to:

http://www.carepages.com/carepages/Liah

Please come join our updates. Thank you so much for your kind words & prayers.

MS

Update - July 12

This morning we awoke thinking our day would consist of an upper GI. Given the feedback we received last night regarding the MRI scan on her brain was normal; I anicipated the upper GI to be complete by 10am, results in-house by noon. We planned accordingly.

Got dressed and headed out to Cambrdidge Street to get some coffees early. The walk back, my blackberry rang. Not good- it was Ker'. Frankly when you get a phone call from your wife telling you the GI team just informed her the radioligst report showed 'abnoramlity' in her brain, or a variant. I was numb. I had .25 mile to walk and I was numb. I was just told, they found some abnormality in her brain scan. It all made sense, the vomiting, the keen sense of smell, the upright discomfort, leg pains, it all made sense.

The GI team spent some time with us when I got back. The MRI showed an apparent 'variant' in the reading. Their plan - get the upper GI tomorrow (Monday) with full follow through - then repeat the MRI under sedation Tuesday. This MRI will be tougher - 2+ hours under sedation.

There's something about watching your child puch their IV transporter around laughing that just wrenches are your heart. She is an angel.

After the news, I met some friends (Yash & Bramhall) for a 1.5 hour roll around the Charles River. We rolled with ease, laughing. I needed the ride.

We took the girls for a long walk outside when I got back. The nurse disconnected the IV, allowing us to take Liah down to the boat house along the river.

It was a beautiful day. Now we wait, more testing, more waiting, but we feel blessed, we laughed today, and Liah looked like an angel.

Tonight - I am on a date with Liah - Ker' went home for the night to stay with the other girls - they needed her home. It will be tough when I head to work tomorrow - I will be 15minutes though to work - the only benefit of working in BOS. Wont miss the 70 mile one way commute!

Good night - and thank you all for your prayers & kind words.

Mass General Updates 7/12

Yesterday was a critical day for us. Ker' and I had almost concluded together (strange how it came together for both of us) that Liah had a possible complication in her brain. We have spent countless hours googling, wikipedi'ing, any and every diagnosis, symptoms, treatments, for the past 6 months.

But - the order of (waking up periodically (every 5-10 days) crying of extreme stomach pains, throwing up 'ONLY' when standing up, crying of severe leg pains, unexplained eye and face swelling, change in her habits, not eating, loss of weight, strong keene sense of smells turning to nausea, immune break downs causing pnemounia, strep infections, bronchitis, where do I stop explaining our last 6 months with her.

WIth this order - the plans were changed yesterday. The original testing the GI team wanted was the Upper GI, endescopy, etc. When Dr.Russell arrived yesterday, he told me after driving home the other night and dictating his visit with her, it was a moment of clarity, he wanted to shift the testing to focus more on her brain. He wanted to test, then rule out any brain issues (tumor). So - the plan changed us to an MRI scan of her brain. The schedule was for 2pm but we were ready to go at 4pm.

Only one of us could be in the room with her during the rapid MRI-5minutes. The machine at MGH in enclosed. Scary for anyone let alone a 4.5 year old. Our nurse (Karen) is unlike anyone I have met in the RN field. Their is a reason MGH pedi is so incredible. Her personal attention to detail with care is making all the difference to Ker' and I in this tough/emotional ride, and for Liah, Karen is all the difference in her smiles. So - Karen brought her down to imaging in a 'chariot' of sorts, complete with her new bright colored watermellon pillow case, a few books for Ker' to possibly read during the procedure. The MRI technicians too were well trained to work with pediatrics.

I was asked to wait outside, emotional for me. Watching my little girl be routed into the enclosed machine in a head carry plate, tears rolling down her face. It took approx 10 minutes the tech grabbed me in the waiting room, told me Liah had done an amazing job. Wheeling us back upstairs she said he would hear soon-but prelim looked 'ok'.

The child life specialist scooped us up from here, taking Liah and her sisters into the Pedi unit play room. This room is amazing. It is well efaced with large glass windows overlooking the BOS government center landscape, but more the room is wall to wall toys, crafts, play areas. Liah attempted to play play dough, quickly shifting to bowling with her sisters, but wanting to get back to her room to lay down.

Karen (RN) let Ker' and I grab dinner in the caf at 6pm. When we got back Liah was sitting, and had apparently 'done' Karens hair, makeup, nails, etc..they were like 2 roommates-smiling and happy when we returned from dinner. Blessed to have this staff.

The rest of the day was slow-I went out to grab a run along the charles. I needed to breath, think, cry, so Liah didn't see. The night last night was tough - after I went back to NH (home) to pick some things up, my drive back got me stuck in 2.5 hours of traffic, closed my eyes at midnight, awoke at 1am to Liah crying her stomach hurt badly. We were up for 2 hours, I slept with Liah, Ker' needs her rest, she is an amazing Mom, not missing a moment with Liah, and the girls. We are up at 7am, not a great night, hoping today brings more answers.

Update - Her favorite nurse Karen just showed up, she is back! Off to take Liah to a 'tub' room for a bath. She wore (for Liah) - a pink top with monkeys on it, "just for Liah". Liah's face just got the smiles! Off for a bath with her favorite nurse.

This morning she is scheduled for an Upper GI. I am her right hand through this one, wish her well. We are thinking a few different things right now after the MRI prelim looks good. Still waiting for the final reading, but Karen has let us know, the MRI showed no significant issues.

So - off for a bath, then the GI testing. (I am off to round up some coffees). More later.

Thank you to you all for your kind words & prayers. Toughest few days for Ker' and I ever, but more important we just want Liah to be diagnosed & treated finally. Mass General hospital is our new saving grace.

Back soon....

Mass General Updates 7/11

Updates posted soon -thank you for your prayers. We are scared - but testing starts this morning will help get us answers.

Update 1-

I am scared, confused, angry, sad. I have the attention span of a mite. Watching our vibrant 4 1/2 year old Liah battle since January with health issue after health issue, countless doctors appointments, nurse on-line phone calls, watching her be sick, losing weight unexplained, and cry to us over & over that food makes her sick. Her sense of smell is too keen for her age.

She has been admitted locally in NH 3 times since January, no one could nail it. Blood tests are not showing anything as of 4 weeks ago - but we are parents - we have the gut no one in science can explain.

We woke up yesterday again to her sick - feeling the gut - I and Ker' knew something was wrong. We got her a late afternoon appointment at the Mass General GI Unit in MA. Our GI doctor we have seen since our kids wer born. He has performed (2) endiscopy's on our fist 2 (Ella & Liah). He is thorough. 2 minutes in his office taking a look at Liah- he advised we admite her asap and begin the rigor of the tough tests.

I had not cried this much in years. Hiding it from Liah, no reason my baby should watch her daddy cry. This is months worth of watching her like this - no we were on our way to Mass General and not leaving until we know good or bad.

We arrived through the Mass General ER at 4pm. She had a few bouts of throwing up, getting me once inthe shoulder and shorts. They admitted us into the Pedi ER by 5pm. They started IV fluids and took a large amount of blood samples to begin the blood work. I am amazed at the strong tough questions they are asking. The GI Team of Dr's arrived into the room and we spent the next 30 minutes pouring over the history. Saying it loud, it is scary how sick she is. Another stomach x-ray, blood work, we agreed with the team, the brain scan MRI, Upper GI, CT scan, endiscopy, etc should happen in the morning.

We moved up to the ER at 10pm. A shared room, someone was on the Charles River side, it would be a temp room until the morning. Lights out by 11:30 for us, she had some meds for her stomach. The night was tough, Ker slept in the bed with Liah, I slept on the pull out seat, as is. I went to bed scared and anxious for the morning. I remember waking every half hour for nurse visits, the crying baby in the next bed. Her heart rate is high, too high for a 5 year old lying down.

What I did not expect was when we woke, for Liah to be crying her stomach was really hurting (a claim she has made for the past 6 months with many tears). Here are her symptoms since January (vomiting, severe stomach pain, sever leg pain, unexplained brusing, strong sense of smell, low immune system (pnemounia, bronchitis, etc), swollen eye (around the eye) 5-6 times)

Writing this I am breaking down - our girls don't deserve this. I want to switch places with her so badly right now. This should be me. She is an angel.

Signing off for now. I am hoping the more I write the more it will help.

We don't know much more right now, the GI team of dr's is on their way in, we will know more soon. Thank you for your prayers

Exeter Throwdown Ride

Last night I attended for the first time the Exeter Cycles weekly throwdown.

In attendance, Robbie King, Kirk Carlsen, Dylan Mcnicholas (CCB), Josh Bartlett, and 25 other strong riders.

50 mile ride, wheels stopped at 1:58. Fast ride?

It was a thrown down, I took 5th in final sprint. Stuck the entire night in 53x14 after my SRAM shifter snapped 10 miles into ride.

Lame ride report I know.

Ol'Home Dayz

Grunt work comes to me naturally. During my collegiate years in the summers I worked landscaping along the seacoast. My favorite moments were when I was knee deep in grit, mud and had to keep going, like the last lap of a crit on a warm summer New England night, their is an insurgence of "again; one last dig". So - this weekend we dug out and finished a 500 sq ft organic vegetable garden, fitting to feed the family for the summer & fall. It was a day off the bike on Saturday, but a full almost 10 hours of labor. Sunday I got up early and rode with J-Spin (www.sveltecycles.com) on a climbey course. The discussions were as usual relaxing, we chatted on the flats, I worked to stick his wheels on the climbs (until Center Hill Road)! He had a demo ride on the IF full carbon XS rig.

The garden started as a 'concept' from Ker'. The concept with some 'seed growth' turned into a saturday morning project. Hitting up the local garden shop proved to be wise. Like a sailor in thick i was a trip! The ROI of this project is withink the first 12 months (although be it debatble over a pint of Majic Hat # 9) - our selection of growth looked promising. So - we picked up:

1. 3 yards of organic farm composte matter (to be delivered by my good friend Dave at Tamarack Landscaping).

2. 3 yards of Peat Moss (organic peat moss procured at the local store)

3. 8 Fence Posts + 100 ft/rodent fencing 3' high

4. 4 packets (5 ea) of Bamboo sticks (for the tomoatoe & pepper plants)

5. 'Bird' reflective tape (stir their keen eyes away) - to put on each post

6. Cow Manure (small bags - 20kg) - procured from local store

7. Seeds (all varieties) + 12 tomoatoe & 12 pepper plants

Saturday morning was the grunt work, repeated tilling (had to rent a motha of a transformer (robots in disguise)). Inbetween tilling was tarps full of sod cut trips to the rear of the garden. needless to say mid-Saturday we were spent, after hours basking in the sun - fatigue was setting in. No need for a ride Saturday, just some TLC bubble bath time (Sully Style). We called it (like a ballgame being called for rain); the night was done at 6:30pm, falling into the house, fumbling over one another to put the kids to bed, we had the garden dug, but not planted.

Sunday I had planned to ride a 100 miler in a local benefit ride. A friend of mine at BAE Systems had shot me a note he was planning on riding. That was my plan. No dice, when I woke, I had missed the plate of the guy driving the semi that ran me over, (so to speak) - checked my 'Crackberry' and there was a majic e-mail from J-Spin.

"Ride-my house 9:30?" it read

I shot back "can you do 9? I have a kids b-day party in Hudson at 1"

"Yes-see you then"

Score - I now had a plan to ride a hilly 4 hrs with J-S. The ride was beautiful, the dicussion chill, the hills plenty. I worked hard to stick his wheels on all the hills. I was successful until we hit Center Hill Road. I lost contact in the first 1/3'rd - like a teenage boy on prom night. 4 hours later, good sensations in the trunks (legs).

The afternoon consisted of planting, sowing the seeds (so to speak); placard cards placement, and some clean up raking; and voi;a' we have an organic veggie garden! Complete with:

1. 4 rows of corn (20' wide)

2. Brocoli - 4 rows 4'

3. Dill 4 rows 4'

4. Carrots 3 rows 6'

5. Summer Sqaush yellow/green 2 rows 20'

6. Cucumers 3 rows 6'

7. Carrots (short/sweet) - 4 rows 4'

8. Tomatoes - 2 rows 10'

9. Bell Peppers 2 rows 12'

10. Spinach - 2 rows 6 '

11. Scallions - 2 rows 4'

A concept to a project, completed. Wish our government could complete their concepts!

The project will not stop here, with some education and knowledge in sustainability, the next phase biodiversity, and the circle exchange!

The a sailor in thick fog, we hit land!