Wednesday, June 30, 2010

What a Few Weeks!!

We have had a lot going on, but it has been mostly “busy” stuff instead of scary stuff.  I’ll take busy any day.

Lily is getting her spunk back!
 Lily is able to play and have mostly good days now, even with all of that hardware in her face.  The doctor was right, once we stopped advancing bone, her pain went down significantly.  It is still a big showdown and tearful, crying occasion every day when I clean the pin sites, but I think even that will improve as they heal.  The times she accidentally gets her pins bumped or stuck on something are also not very good moments.  It looks like Lily will be getting her pins out sometime mid to late August.   She tells me every day, very seriously, “I haa ees in”......”  “I hate these pins”......but then she moves on to the next adventure of the day.   

The BEST news we have had is.......Lily saw her ENT last week and Dr. L said she was putting Lily on the schedule for Sept. 22 for a bronchscopy, and subsequent admission into the ICU to take her TRACH OUT!!!!!  Did I just type that??? Did I just type the words I have been waiting for, forever it seems?  I realize there are all sorts of caveats here....if she gets sick, it will be bumped back, etc....but at least it is on the schedule.  We capped her trach in the ENT’s office, and for the first time ever, Lily was pink and breathing fine, not turning gray and struggling to breath.  I was dancing around, and the ENT hugged me as she beamed and said “This is the best part of my job!”  

So, now we are practicing capping her trach at home, which in typical two year old fashion, Lily is in charge of when we put the cap know, it is HER trach!!!  But, when we do cap, she is doing fine. 
Yes, we sit in the kitchen floor taking pictures!

We celebrated a very special birthday!  Every birthday is special for a boy who almost didn’t make it at birth.....that story is for another day, but suffice it to say, we all send up special prayers of thanksgiving for every birthday of our sweet guy.  He has had his trach out for four years now, lots of hope when I look at this face, and know that we are very close with Lily!!

So, life is getting back to our usual intensely medical family kind of days, but I am eternally grateful for each day that is a “No ER” day, days that I am concerned about laundry and cooking, and not about when I can give the next dose of oxycodone. While those especially hard days are good for us, I am not a saint...yet...and I don’t go running towards suffering.  I usually come out of “those times”, though, with a much greater appreciation for the blessings God has given us, especially the grace to get through seemingly impossible things.  He is truly Good...all of the time!

With many thanks for your numerous prayers,

Saturday, June 12, 2010

Praising God from the Rooftops!!

Lily is doing so much better!!! No pain meds for nearly 10 hours!!  I bet she is wiped out tomorrow, but for today, we are so excited to see her playing, swinging on her new swing, drawing in the playhouse, going on errands.....she has been very busy!

Thanks, Friends, for your prayers.....had to share with you the fruit of your faithfulness.  I am guessing we will continue to have up and down kind of days, but I think overall, Lily is on the upswing.

God Bless you all!


Friday, June 11, 2010


She’s still 9:05am!!  Lily only woke up once last night at 4am, gave her pain meds and fed her (through her g-tube), and she went back to sleep....what an improvement!!

Thanks to our good friends who had us over yesterday!!!  Lily had a great time playing with her “girls”,  A. and S., who were oh so sweet to her!!  It did all of our hearts good to get out.

God is Good!!!


Wednesday, June 9, 2010

I Must Make One of These and Lily update

Oh, be still my heart.

That will take you to the sweetest quilts ever, these mini quilts.......I was oohing and ahhing over them like a baby.  Take a look and don’t be surprised if you see a few up on my wall the next time you are here.

Also.......I have mixed news.  Miss Lily is no longer in active distraction phase!  We have stopped turning the pins, and will start counting now our “double the time”, which means if Dr. B. plays by his rules, the distractors will come out the first week of August.  He did leave a little wiggle room with that date, and said it also depends how much new bone growth he can see on the x-ray, and if it is inadequate, he’ll leave the distractors in longer.  I told him Lily’s birthday is later in August and he needs to get them out by then.   Like he listens to me......Actually, I have to say, the last several times we have seen him, he has been very compassionate and listened and took a long time with us to answer our questions.

The mixed part of this that I tell you while I am still jumping up and down in excitement that we are no longer turning pins is......Lily’s jaw is so, so asymmetrical, like crazy asymmetrical.  Everyone has assured us that this is happens, it freaks parents out, (you think???), and somehow, by some kind of magic soft tissue boggie woo shifting after the distractors come out, it pulls mostly back into alignment.  Let’s hope is disconcerting.

Off to work on Lily’s quilt.  She is outside...playing..with Daddy.  Isn’t that good news??  While she had bad moments of pain today, and didn’t sleep the best, I do see an improvement today in pain.  I thank everyone for your diligent prayers!!!!!

Carry on,


Tuesday, June 8, 2010

The Last Few Weeks

So, a lot has gone on the last few weeks.  Just one of those things would have been busy enough, but we have compound interest in chaos.  G. is doing great after his appendectomy, which is a blessing, because Lily has had a very rough few weeks.

Here are a some peeks into our days:

Oxycodone staggered with tylenol.....heavy duty for a 24 pound two year old, and it is barely cutting it. If you look very closely, you’ll see the black plunger to a syringe stuck inside the oxycodone bottle.  I dropped it in there at some point. and can not get it out!!  So, because I am completely sleep deprived, I actually had a conversation in my head with myself that went like this--
“Oh my gosh, do you think the plastic from the syringe might leach into the medicine and contaminate Lily with some kind of BPH something or another?”
“Geez, maybe you should get more sleep”
“No, really......I must get that out, it might change something in the medicine if it stays in there, where are those tweezers?? Preferably the ones not used to dig glass out of people’s feet!!”


So, anyway, that brings us to this:

I had another discussion in my head this morning.  I contemplated going back to real, fully leaded caffeinated coffee, given I have had very little sleep lately due to Lily’s pain issues.  I said to my self.....again....”You know, maybe I should fix some coffee with insurance in it”.   INSURANCE.....that is what my tired brain said to myself.....I said insurance instead of caffeine. I am thinking in a weird kind of way, maybe caffeine IS insurance......


Speaking of insurance, this is sanity insurance for mama. I started another quilt, specifically for Lily.  I cut it all out on Memorial Day when I had lots of help around, and have sewn on it early mornings as Lily watches PBS.  I discovered that I can do a large majority of “quilting” in the embroidery hoop, how cool is that??  I can’t wait to show ya’ all.  Happy colors rule here.  The best part is, it all came from my fabric stash.  I didn’t buy anything for it!!  T, you might recognize some colors from your own lovely quilt....that is nice in a sister quilt power kind of way, don’t you think?  

I have become uncomfortably familiar with St. Therese of Lisieux’s phrase, “Jesus must be asleep in my boat, and I will just let Him rest”.  In my many, many prayers for my girl the last few weeks, I didn’t say it so sweetly as Therese did.....I yelled, I cried, I pleaded.....and yet He still is asleep, asking me to have Faith, and then some more Faith.....and more still....stretching me into who I am suppose to be.....surrendering our children at the Foot of the Cross is painful, bittersweet, and painful, and!!!!!!  In the end, He wins, and in this life of special needs children, I hold on to that with all I have.

And finally, my girl....hamming it up.....sporting her new and improved jaw.

What a brave little girl.  Pray for her, pray for pain relief and a return to sleeping without crying out in pain, and for people not to stare too much when she is out.....she wants nothing more than to play and visit with people, such a social little thing.  Her pain should start to subside pretty soon here, we are only turning one pin now, twice a day, instead of all four, probably for a few more days.  I know as we return out into the world in the weeks to come,  going places other than church and the doctor, strange looks and stand offish behavior from others in public would probably break her heart.  So you better be nice to’ll have four big brothers and a Papa Bear daddy to answer to!!!!
Thanks, Friends, for you prayers.   

She insisted on getting a shot of her foot.  Probably doesn’t hurt like everything else!!

Oh Good Grief!!!!  When will he say my jaw is big enough????