Aligning with what the world offers to us

Victory - we are potty trained!

Here's a link to my bro-in law's own blog... which is geared for the midwest fly-fisherman, BUT his most recent post on 12/3 contains the most heart-warming story about Jack that also reminds me about the gift contained in each moment. I also understand now why jack answered with "FISH" when the teacher at preschool asked what he was grateful for last month.

Jack is doing really well. He's busy casting webs like spiderman and opening the chocolate in his advent calendar. He and Sam had a fist fight over who saw Santa out which window in the car this morning. So, all in all I have to say things are 'normal' around here. We have our next visit to the kidney doc at the end of the month.

Sadly, we had to say goodbye to our home care nurse this morning. Our insurance changed with Harry's new job and as a result this service is no longer provided. We had VERY tearful goodbye this morning and hope to have a new plan in place soon. We still need to have biweekly labs and an assessment for Jack. So, I trust in the grand plan but hope that we can rebuild a new relationship in a clinic where Jack feels safe. (I'm not jazzed about hauling both boys out in the snow and sitting in a clinic with a child that is immuno-suppressed all before 8am). His blood draws are complicated as his veins are so small. This morning it took 3 venal punctures, strong arms, lots of yogic breathing, and finally a finger poke to get the job done. Thank GOD for spiderman band-aids and for our amazing nurse Lynn.

And yet, .... we remain humbled and grateful for today, for fish, for uncle jeff's unwaivering support around here.

Some pics...

on a hunt for a xmas tree in st. croix valley with uncle chad and pop

superciliousness

Cherry Margaritas

Two weary parents in celebration of 7 years of marital bliss escape to Door County, WI and sip cherry margaritas in 40 degree temps watching the sun set on the horizon. Woo HOO!

Meanwhile, back at the ranch... Sue Sue and Pop take over the Certain household and pharmacy. Chocolate milkshakes and googly eyes noted below.

A visit to the Orchard for donuts + blue sky.

And here's some pics from the archives of September. It was a really full month. The boys turned 3! (holy batman) We had visits from the Grandpa Bob and our dear friend Kellie who is an amazing photographer.The first few pics were taken by Kellie...


The boys working on handstands during the debate!

A mother's love (batman cake) or insanity.

oh... and by the way, the cherry margaritas were over-the-top fantastic. Seriously. Thanks mom + jim, uncle jeff, our nanny christie, and grace for allowing us to slip away, sleep, and play. Thanks dad for running to the store at the last minute when I realized I didn't have black food coloring for that damn (whoops) birthday cake! And thanks to all to continue to be entertained by our adventures.

OH.... and most of all.... Jack is great! If it is any indication that I nearly forgot to mention his health in this post, let it be known he is super fantastic. We continue to have home visits from our nurse and watch his labs each week.

Much Love,
Ali

First Day of School!

The boys above are happily modeling their backpacks in preparation for school! We only had a few heated arguments over who would get to have the blue one. 

The last month for Jack has been the best ever. I'm still in awe when I see his cheeks every morning without the tube and tape attached.  The meds have been going well although a degree in child psych would serve me at sometimes. For Jack, the need to be in control and have choices in this process is important. 

Jack's labs indicated yesterday he might be preparing to fight his first cold or infection. (White blood cells and other lab results were extremely low). The nurse indicated his 'first line of defense' is very weak so we have to be very cautious and protective right now. My hope is that he can have the strength to fight through this and stay in preschool as he LOVES it already. We'll learn as time unfolds. 

The boys turn 3 on Sunday.  Of course, we're having blue cake. That should be a good pic for the next blog update. 

Stay tuned.... 

Ali

 

FREE!

The feeding tube is out!  Applesauce + meds + courage + trust + patience was all it took.    

 

Summer

A full month has passed since my last post. (Those of you with blog addiction are surely aware of that.)  So, Jack continues to make great strides. The last month has been very steady and it is truly amazing to see my kidney in action in his body. His muscle tone is significantly greater, he can jump, talk back (thanks again to steroids), and could potentially win a hot dog eating contest for toddlers.

His only medical intervention in the last 30 days has been from our home nurse who has come 3 x's a week to draw blood and change the dressing on his central line. (The central line is high maintenance and often the culprit for an infection but the advantage is that Jack doesn't feel a thing when the nurse draws blood). Since his labs have been so consistent and very favorable we are removing the central line this Friday which is a big milestone! Of course, the downside is that he will have a venal puncture 1 x per week which will dramatically change his relationship with his home care nurse. It's a quick poke to draw blood and Jack is a tough patient because he his veins are very small. Overall, very good news that lab frequency is spreading out and the the central line is coming out. The first thing we will do to celebrate is take a bath and go to the swimming pool (both of which are restricted with a line).

We are currently planning an exit strategy for the feeding tube that Jack has managed to keep in since December '07. He is interested in foods but not so interested in liquids. The kidney requires a certain amount of hydration (+25 oz / day) so the feeding tube acts as an insurance

 policy to keep him hydrated as well as administer his meds. We are working with a nutritionist for support and hope to be down with this by September assuming he will take his meds orally. It is not uncommon for us to wake up 3-4 x's an evening to deal with a feeding tube related issue (i.e. kink in the line, tube has come out, leaked, or the pump is finished and the alarm needs to be turned off). This is by far our biggest stress and frustration right now. I remind myself how far we've come thus far and that I'm not the one with the tube in my nose and throat. 

Sam + Harry+ Jack+ Gpa Joe

(yes, those are my salad spinners)

The Tide Turns

Sam makes the headline this week:  on the 'injured' list with high fevers, covered with cold washcloths and a rash. "Everything hurts and I need a special treat" -  Sammy 11pm.

Meanwhile, Jack had a fabulous week!  Harry pointed out to me that I wasn't really acknowledging this fact when people would ask. Cautiously optimistic, I would say "he's pretty good" when in reality he's never been better.  I suppose I was just too afraid to admit it, in fear that it wouldn't last. Then again,... the only constant is change. 

The kidney biopsy did not happen last week as his labs steadily improved (although still a work in progress) and his blood pressure has stabilized. The fevers have been banished! In his radically apparent new experience of freedom, confidence, and health he is an official wild man - running his mouth 24/7 , growing hair in odd places (thanks to steroids), and recklessly practicing his baseball swing.  OH... and eating like a truck driver.  (I thought the day would never come!)

 

Embrace the Mystery

After 6 very long days, we are happily back home again. Phew!  The docs have exhausted what feels like every possible scenario and completed an enormity of testing this week and continue to come up empty. This is good news and yet the uncertainty is unsettling. My yoga teacher always speak about 'embracing the mystery' and this most definitely is a courageous act and one that requires great faith.

The creatinine levels continue to bounce around so it is possible that we may do a biopsy next week on the kidney to rule out rejection. 'Bouncing around' is common with kids because they metabolize much quicker than adults. Time of day, hydration levels, drug interactions can all be factors in this. If rejection is happening they will treat it first with additional immuno-suppressive drugs. However, we need to ensure there is no viral or bacterial infection first as this would put Jack in a comprising situation. If his labs on Friday morning are stable then we'll continue to move forward ("proceed with confidence" as my mom says).

Jack and Sam are happy to reunite. They pretend as if they don't miss each other while they are away and then they act like flirty, shy teenagers when they see each other again. It's quite cute until someone gets whacked for hoarding a toy.  

Thanks to dear friends and family once again for keeping our momentum going.   

May all rest well tonight in the darkness.