Monday, August 5, 2013

August 5th update

Our new home!
It’s been a busy month for the Foys, so forgive me for letting so much time pass without posting an update.  We just moved into our new house, which we LOVE, we have been without internet for a period of time and we are just plain busy. 

Theo is great.  I love him to pieces.  He is such a good kid, with big smiles and an easy laugh.  He’s loving all the extra space that our new house affords; apparently I was not the only one who had outgrown our apartment.  Medically, he is still doing well (yay for no dialysis!), though we continue to pray for continued improvement in his kidney function and a stable Prograf (immunosuppressant) level.  Until then, he’ll continue with labs twice a week at the hospital. 

Unrolling the toilet paper one last time
before we moved
In terms of his development, we’re continually reminded of the big role that the kidneys play.  Now that he has a functioning one, he is thriving.  He’s gained about 4 lbs since transplant, tipping the scales at 23.5 lbs now, and throwing up is now the exception, and not the rule.  We’ve been able to transition from j-tube feedings only (directly into his intestine) when he came home from the hospital to a combination of j-tube and g-tube (directly into his stomach).  That’s allowed him to go from being connected to a feeding pump 21 hours a day to being connected only at nap time and bed time, with the rest of his feeds being given more quickly during the day.  As a result, he has a lot more freedom to crawl around, pull up on things, and be active!  We're still working on getting him to eat anything by mouth, but know that it will get easier with time.  

Walking is still a work in process.  A few weeks ago he had made unbelievable progress, taking up to 15 steps on his own.  Then, a few falls later, he decided that walking was not for him.  He’ll hold onto the stroller and push it for miles, but he won’t even attempt to stand on his own if we let go of him.  We’ve spent the last few weeks trying to get his confidence back up, and over the weekend he took a few steps while I held on the back of his shirt.  Baby steps.  I know he’s a late bloomer, but when we remind ourselves that he couldn’t even hold his head up when he came home from the hospital in late May, we are so proud of all of his physical progress.

His permanent catheter (the lines off
his chest) will come out Thursday!
The big news from today’s clinic visit is that Theo will soon lose another accessory.  One of the stitches of his permanent hemodialysis catheter has come out, and the benefits of keeping the catheter in at this point don’t justify leaving it in.  The permanent catheter is routinely placed during transplant as an “insurance policy” if the kidney doesn’t work and the patient needs hemodialysis, with the added benefit that it can be used for blood draws.  Obviously, that insurance policy paid off for Theo, but we will be thrilled to see him without it.  Once it is out, we will be able to give him his first real bath and submerge him in water.  I can already see the look on his face when he gets to sit in the tub and splash.  He is going to LOVE it.  The procedure is scheduled for Thursday,  and we are hopeful that this is his last experience with anesthesia for years.

We’re all doing really well as a family.  We know that we have so very much to be thankful for, and are amazed every day that we get to raise Theo.  He’s a special kid.  One of the best moments of the weekend was pushing him on the swing at the park, and stopping him mid-swing to kiss him.  He couldn’t get enough of it, and would pucker up and laugh so hard.  I think he knows he is loved. 

From a prayer request standpoint, we’d love continued prays for improved kidney function and stable Prograf levels.  We’re also interviewing potential full-time nannies to care for Theo now that our summer help has to return to their real school jobs.  If you could pray that we find the right person to care for him, we would really appreciate it.  It’s such a huge decision for us. 

Thank you for continuing to pray for Theo, and for the notes of encouragement, the kind words, and the faith you all have.  We are so blessed.
Too cool for school.

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