Bathtime!

Today was Reese's first bath since sometime before August 27th (diagnosis day).  It was much-anticipated by her parents who eagerly opened a plastic bag holding a special hooded towel, embroidered with her name.  All of our kids have one, in their own special color, but Reese's has been sitting, unopened, in top of our bathroom closet, waiting for Reese to use it!  We bought it in faith months ago (when we bought her brother's to match her big sister's).  Throughout everything, it has helped to look to the future and plan for Reese to be there and thriving.

Turns out Reese was not as excited about her bath as her parents.  Philip clung to my legs.  Charlotte intermittently made a mess and sang songs to cheer Reese up while we bathed her in the sink.  Nonetheless, Brian and I were there smiling, camera in my hands, soap and Reese in his!  Reese's life experience has been very abnormal since she was 5 1/2 months old, so "normal" things are sometimes hard for her at first.  Sitting in a tub of water was a bit overwhelming (sensory overload at its best) but she warmed up to it by the end of the bath.....and she smells heavenly! :)

Reese has had a good week following her central line removal.  We are working up on her feedings even more so that we can hopefully give her bigger breaks off the feeds.  The goal is to get her off the continuous feeds for at least 6 hours a day so that she can actually feel hungry.  This will make teaching her to eat a little easier.  She still isn't keen on the thought of food but she has surprised us, her doctors, her nurses, therapists, etc many times during these past 11 months....so I'm usually surprised if I'm NOT surprised when it comes to her ;) Reese has some limitations as a result of what she has been through.  Her arms are not very strong because she hasn't been able to lay on her stomach to build up the strength in her back and arms.  Her legs are weak because she has been in a hospital bed.  Her hip flexors (muscles in front of your upper thighs that are stretched when you stand, lie on your stomach) are tight so she prefers to be a ballerina with her feet in the air.  So, as she is learning to get around, she has created new ways to do some things.  This week, she has started scooting forward on her bottom (while sitting) to get stuff in front of her.  She has fallen over to her stomach a few times and pushed herself back up to sitting position!  (huge!) When I pull her up to sit, she sometimes straightens her legs so she can stand up (with me supporting her).

4-5 weeks ago, she would not put her feet down to stand. 3 weeks ago, she put her feet on the ground for 10 seconds or so.  2 weeks ago, she stood for 30-40 seconds.  This last week, she stood for 3 minutes, holding onto an ottoman for support (no help from us).  Her therapists are VERY pleased with her progress!  As she feels better and better, we see more and more of that feisty baby girl we brought home with us from the hospital 16 months ago!  Her occupational therapist laughed this week because she was actually taking toys back from Philip (who had been sneakily taking them from her while she was having therapy).  Let's just say, Philip may end up being glad Reese gave him a headstart.  Poor Philip is going to be tough as nails after his sisters get done with him! :)

Brian and I also got to hang out with 2 couples this week which was really nice.  I also had a fun friend stay with me while Brian was on call so our social interaction was up nearly 300% this week which is always helpful for me.  I feel like being home with 3 age 3 and under (one with medical issues and one with an allergy to potty training and the other who never stops moving/climbing) had been so hard for me some days, but I feel like it has gotten easier lately.  I guess I'm getting better at it...or maybe the potty trainee is finally conceding...or maybe it's because Reese is getting better...No matter what the reason, I'll take it!

Just wanted to share some pix

The towel

Reese being retrieved from the bath "staging" area

About to go in!

Testing the water

"I don't think I like this!"

I DEFINITELY don't like this!

This isn't so bad with my thumb!

Little cutie pie hanging on my legs

"That's right, Daddy.  Make sure you scrub behind my ears!"

So happy it's over!

Back shot of the towel!

Best part of finishing a bath...snuggle time!

Other two taking advantage of mom and dad's attention being diverted.

Having her hair brushed.

Our brave girl! :)

An event worthy of a post

Reese is officially tubie-free!!  (no more central line) The nurses refer to them as "tubies" when talking to peds patients.  I was nervous a few days before the line came out because Reese had been a little grumpy and had been having diarrhea/vomiting more frequently after her infusion on Tuesday.  I was afraid that she might have nausea after anesthesia as she has in the past.  Strangely,  she hasn't!  In fact, she has actually been happier since the line has come out.  She only required 3 doses of pain meds and she has otherwise been great!

She has been active and bearing weight on her arms and legs more.  Actually straightening her legs and standing (while we support her).  We have been able to get her feeding volumes up (the amount of formula she is getting) as well so that is exciting.  We are now out to monthly clinic visits and she has been turned back over to her neuro-oncologist (not her stem cell transplant doctors).  The preliminary immune results came back and the immune cells are present but in low numbers.  We don't have the results yet that will tell us how well the cells are functioning (which is really the important part).  It's possible that some of the restrictions could be lightened (which would be great), but we won't know that for a little while longer.  In 2-3 months, she will have to undergo more testing to see how she is recovering.  In the meantime, we have to keep her from getting sick (by precautions and prayer!)

Another fantastic thing is that Reese's hearing was normal (for the pitches/frequencies tested by this particular type of test).  She had the same test after her first cycle of chemo and everything was stable after 4 additional rounds plus a stem cell transplant round.  There was a 25% chance of hearing loss so we are so thankful for this. This is one of the things we have prayed for.  Reese LOVES music and we hoped that she would be able to fully appreciate it someday.  She may still lack some of the highest pitches that weren't tested but none of the pitches that are required for speech or every day interactions.

After Reese's line was removed, she had to leave the bandaid in place for 2 days.  Tonight, we got to remove the bandaid and she is officially adhesive free for the first time in 10 months! Whew-hoo!!  She still has her Gtube for now and her shunt (which is completely under the skin).  She has to wait 5 days to bathe or submerge the stitches (there are 2) but we can't wait to bathe her in a tub (and not with special wipes!)

Below are a few photographs documenting some "lasts" of the week and a few "firsts"!

Last flush of the central line the night before surgery

One last night with my central line!

Now you see it...

Now you don't!

First time Reese "helped" put Charlotte to bed 

The big reveal (the most exciting bandaid removal ever!)

Reese takes a peek....

And decides she LOVES it! :-)

16 months old!

Yesterday, my babies turned 16 months old.  It's really bizarre how fast (and slow) it happened.  Charlotte was officially 3 1/2 years a few days before that.  I remember  nursing her for the last time on her 16 month birthday and thinking--"This is it.  She doesn't need me for this anymore." It was an ordinary moment like all of the ones before, but it was different because I knew it was the last time.  I knew that there were other exciting things ahead but it was a "last time" and I wanted to remember it. (Too bad I'm not sentimental at all...ha!)  2 months later I was pregnant with twins!  So when they turned 16 months, I looked at them and thought about that day when Charlotte turned 16 months old.  It feels strange to put the memory in context like that.  I know when the twins turn 2 years 2 months, I will think about Charlotte on the day they were born.  Despite my sentimentality, I spend a lot of days looking forward to the days when my kids will not need me to wipe their bottoms, take them to the potty, get their food, tell them to stop climbing on the furniture (again), plan things around naps and meals, etc etc.  At the same time, I realize that this time is passing so quickly (though the days seem slow) and I don't want to miss ANYTHING!  I don't want to regret anything with them, but I know I probably will because I won't get it all right.  Parenting is a humbling experience and having a major health crisis in your child just makes you realize all the more how "not in control" you really are...and how scary the world is...how many things threaten to harm your child.  It can be so overwhelming and crushing at times but I know that I have to lean ever harder onto God's chest and trust Him to protect my kids, to give me the grace to accept the hard things that happen or the less than ideal situations we find ourselves in.  (I have to apply Philipians 4:4-9 a lot)

In that same vein, this upcoming week is a big one for Reese (and one we have been waiting for).  She is having yet another surgery this week.  I will again walk into a pre-op area and hand my child over into the arms of a nurse I do not know, to be operated on by a surgical team that I do not know (though she will have the same pediatric surgeon).  I have been Reese's nearly constant medical guardian, watching/questioning everything that is done, etc for the last 10-11 months and I will have to let her go into an operating room without my watchful eye being there.  When she was first diagnosed, I feel like I gladly handed her over to those who could fix her.  We really had no choice.  Now, it's much harder because NO ONE knows her like we do.....  BUT this is a good surgery because it is a normalizing procedure...her central line removal!  It's one less thing that could get infected and it means she no longer needs it for chemo or IV nutrition/fluids!  After it is removed, she will have to be stuck for blood draws but these will be less frequent.  Her surgery will be Friday.  She will also have a hearing test while under anesthesia.  On Tuesday (before her surgery), she will get one last IV infusion in clinic and have labs drawn, etc.  Her first round of immune function tests will be done at that time.  It is very unlikely that she will be "cleared" from an immune standpoint this early, but it would be REALLY nice if she was!  With all of this in mind, I have celebrated some "lasts" this week ( at least what we hope will be lasts).  Her home health nurse came out for probably the last time to help with Reese's 2nd to last dressing change.  (Last one will be done in clinic on Tuesday).  I changed the cap on her central line for the last time yesterday. (Last one will also be done in clinic on Tuesday--by a nurse).  I look forward to other lasts too...the last Gtube feeding...the last day that she can't crawl/walk, etc.  For now, I wrestle to enjoy/savor the lasts without longing for them to arrive too quickly (bc it means that our kids are growing up too fast).

Please pray with us for Reese's successful, uncomplicated surgery on Friday, July 13.  Please pray that her hearing test would come back normal.  Please also pray for her clinic appt on Tuesday, the 10th.  She will get an infusion, have labs, etc.  Though it isn't really expected, please pray that we would be pleasantly surprised by how good Reese's immune function is at this point.  (I'm not sure when we will get those results).  Thanks for reading, praying with us and for us, and loving our family!

Daddy had all the kiddies on the couch this am, waking up to some "Dinosaur Train" (I promise we don't watch TV all the time but our photos make us look like we never stop!  TV,  eating, and sleeping are the only activities that keep our kids mostly still for photos :)

Reese acting like she loves "eating" time. hahah..don't be fooled.

Charlotte in my rocking chair that I had as a little girl.

More couch time together.

Charlotte had a fun play date with her friend Evie this Friday.  She  looked at the clock all day, waiting for the little hand to point to 5, so she could go!  It's so funny to listen to them talk to each other now!