July Skinner update

Alright.  I'm just going to do it.  I'm going to sit down and type.  The kitchen is not clean, there is laundry to be folded, mail to be opened, and floors to pick up.  But the all kids are in asleep and that's enough to make anyone want to sit on the couch and move nothing but fingers!  You may not get any pictures just yet…but I can at least say a word or two.

We have been doing great!  Summer is in full swing and we have been enjoying many relaxing, lazy days.  It's been so nice to not have a schedule to adhere to.  We've enjoyed many walks/bike rides around the neighborhood, walks to the park, trips to swimming lessons and to the pool.  It's been good. Really a good summer.  A definite highlight so far was our camping trip a few weekends ago.  As those who have gone camping know, it is a lot of work in preparation!!  So much to think about and get ready for one "simple" night  in a tent.  But after you're there…it is almost heavenly as far as we're concerned and soooooo worth all the effort it took to get there.  The kids explore, create and discover unlike what can be done at home.   And for some reason, a National Hebrew hot dog never tasted so good as what it does over a camp fire!!   It's just the best.  All of it.  I loved the memory we make doing it.  And I must say that I think Lucy even enjoyed it too!!  In fact, she discovered her voice while we were camping.  I think it was seeing the camp fire that did it for her.  Up until that time, she really didn't have much to "say."  But oh boy, she could hardly hold it back after our over night trip in the mountains.  OoooooHHH's and AaaaaaaH's galore!  So adorable.  So fun to hear her sweet little voice come out!  And the ride in our new Razor adds some icing to the top of our camping trip!  We all love going for Razor rides!!

Medically, things have been okay.  Okay, let's just be honest here.  For me, having one more medically needy child to care for, think about, type emails and make phone calls to to nurses about, order medicines for, administer medicines twice a day for, make and take to appointments, and above all Pray and Plead for…..has been a lot.  Not to mention she's a baby and needs a bit more TLC in the first place.  But what a sweet baby she is.  I'd do it all ten times over again if it would profit her in the slightest.  She did blood work twice last month and her kidney function did not improve.  In fact, it declined over the previous two months.  The ultrasound of her kidneys are 'bright with stones.'  It's not exactly what we were hoping to hear.  She did blood work again a few weeks after that at the end of June, and her kidney function was slight improved…at least not worse.  The end of this month/first of August will be her next tests.  Just last week she started 3 medications.  She doesn't like them at all.  I'm not sure if more of it ends up on her shirt than in her tummy, but what do ya do.  She's a baby.  You do the best you can and pray for God to help make up the difference.  And you keep doing the VERY best you can.  Good news is that she is perfect, wonderful, and developing beautifully in every other way!  She's still a little peanut…probably nearing 13 lbs at 5 months of age, but she is growing steadily on her  own little growth curve.  She laughs, smiles, oohs, and ahhs, rolls over, and can almost sit up on her own.  She truly is the light, JOY, and center of all our hearts!  

Thankfully, Benson and Claire have for the most part been pretty steady medically.  Benson has had some issues with high protein in his urine and high blood pressure…all a byproduct of chronic kidney disease.  He's done quite a bit more blood work and urine as he's started new medication to try to help that.  But they finally got him on the appropriate dose and he seems to be doing well.  Claire has been perfect.  No issues.  Wow.  What a breath of fresh air and huge blessing that is!  Our little miracle girl Claire!!  She still does blood work once a month but like we all know, she is a pro at that and blows it off as a breeze.

And you can't leave out Mabel!!  Just because she's healthy ((THANKfully!!)) doesn't mean she can't be in the lime light every now and then!!  Mabel actually got some stitches of her own two weeks ago!!  Oh man.  It was bad.  We were at the park and this long, metal tube filled with rice-type material that makes noise when it goes from one end to the other, swung around and hit her right in the eyebrow.  She was bleeding really bad.  Luckily I was there with some friends and was able to leave my other kids (except Lucy) there with them while I took her to the urgent care.  After hearing the story the doctor thought she was going to be able to just glue her back together…but then after actually seeing the eye, she knew right away it was going to require stitches.  4 to be exact.  Not such a great afternoon for sweet Mabel, but she was a trooper and survived.  It has since healed up beautifully and the good thing is that it truly is right in the eye brow line, so the scar will be 'hopefully' covered well with her eyebrows hair.  OTHER than that notable story…Mabel is wonderful!!  She and Claire are best of friends.  She's an absolute PRO on the monkey bars.  She smiles the entire time during swimming lessons.  And still loves to get into mischief.  :)

Ok.  I'm sure there's still more to say.  But it's my bedtime now.  And I'd rather at least publish this than still end up with nothing at all.  ((not taking time to reread so excuse any mistakes)).  It is my goal to write on my blog once a month.  If for nothing else…I need it as a record!  A record of this wonderful journey called life with all it's ups, downs, and somewhere in-betweens!!  I will post pictures soon!!