If you 'mustache', Ethan turned 9!

It was all smiles and hairy lips at our house tonight as we celebrated the little bald guy's 9th birthday.
Thank you to everyone who came and the wonderful, fun gifts!
From the Sparkle Paige, Auntie Carissa and Uncle Roberto Ethan will be the best dressed dude at pool therapy in his new trunks and rockin Toy Story beach towel.
From Aunt Kate, Joe, Marissa and Abby he will be entertained for hours with his silly singing chicken!
From Grandma Sharon and Grandpa John he will look so cool in his new Nike kicks!
He won't go hungry thanks to Auntie Beth's gift of two cases of formula and some shopping cash!
He will be showing his school spirit for his big sissy and Bo-Bo with his new Staley Falcons t-shirt!
He will be able to buy a new Taylor Swift concert t-shirt with the cash he got from Grandpa Chuck and Grandma Teresa!
And he will be able to join us all in his new recliner while chillaxin' and watching some Walking Dead! (I only bought him one summer outfit, and should be acknowledged for showing such great restraint-I figured the 47 he already has will get him through the summer. That and Brian threatened me!)

We are blessed and thankful for every birthday we get to celebrate with our special guy, as there was once a time we thought we'd never see nine years old. Ethan is an amazing little guy who has brought such happiness and joy to our lives. We have all learned so much about life and unconditional love from him. He amazes us daily at what he has accomplished against many odds and with many obstacles thrown his way. And with a resilience like no other!
He makes me a better person, and shows me patience and strength I never knew I had. One toothy smile from him with his wrinkled scrunched up little nose makes my world right. To hear his laughter is my sunshine, and to hold him in my arms and have him look into my eyes makes all my worries go away.

We are the lucky ones to have been given our sweet, special boy. Though not without struggles, nothing would we change about our lives with him.

We love you our stinky, bald guy, Ethanator and hope to have many more Happy Birthdays with you!


And yes, this week my hair dryer caught on fire-yep actual flames, albeit small ones, our living room TV shot craps, and I've been sick as heck. Oh, and Ethan's JG has had to be switched out 3 times in the last three weeks due to clogs in the J part, AND we are heading down to The Mercy tomorrow morning for another one! Thank goodness those IR folks like us ;)
now we just gotta figure out what's clogging it!

Abby and Marissa

Ethan's girls-Carly, Hailey and Taylor

Silly Sissy!

Aunt Kate loves me!

Mommy made my mustache cakes

Chillin in my new recliner

My new kicks

Mommy and E

Frankie wanted a 'stache too!

Goofy bo-bo and sissy

Grandpa Chuck and Parker in disguise

 

 

 

 

Busy month.

80 degrees and wearing flip-flops last week, hats and gloves tomorrow.
Only in the Midwest.

So last week I get this series of texts from Hailey.
Hailey: mom my stomach hurts. I threw up this morning.
Me: then why did you go to school?
Hailey: I had a test. It hurts around my belly button.
Me: ok. Call me or dad later if it gets worse. Gotta go, at E's appt.

2 hours later.....
Hailey: it really hurts mom.
Me: where? What side?
Hailey: if you are facing me on the right.
That's our smart girls answer.
Me: so you mean your left?
Hailey: I guess so.
Me: can you jump up and down on one foot?
Delay in response here as she tries this at school
Hailey: yes.
Me: you're fine. If its still bad tomorrow we will call dr.

No answer for 30 min or so then this
Hailey: mom. I know what it is. I looked it up. It's peritonitis!

Web MD is a dangerous Internet tool.
Me: you DO NOT HAVE PERITONITIS.
Hailey: then it's my appendix.
Me: no it's not.
Hailey: a hernia?
Me: it's none of the above. I'm going to sleep now. have dad take you to dr tomorrow.

A dr appt, an X-ray, 1 IV stick-which Hailey almost fainted from BTW, oral contrast, a CT of her belly, and a $200 imaging co-pay later, the diagnosis? Constipation. Argh! It was actually quite comical. Aside from the $200.

Ethan had two appointments in the last two weeks-endocrine and ophthalmology.
At Endo Dr Cernich is concerned with E's growth on growth hormone. He has grown about 4 inches in the last two years, but only gained a pound in 3 years. He knows we have him on the GH primarily for the cognitive benefit from the Ch 18 research study, and doesn't want to take him off. But he is concerned that our insurance may not want to keep paying if we don't show some significant growth after this many years. So he had some lab work drawn, an IGF to see if there is a chemical response to the GH, and if so, we should be ok dealing with the insurance.

At the eye appt, Dr Hug was very impressed with his tracking of the light up toy. However, she did determine the drift of his eyes is pretty significant, as well as his nearsightedness. Thus, glasses are in his very near future. The drift could be corrected with surgery, but not something we are willing to put him under anesthesia for just so he stops turning his head to the side to see things clearly. Maybe if he were walking, and having his head turned all the time was dangerous to him running into things we would consider it, but not right now. His maculopathy is still the same, no worse, which is great news.

My pre-op appt was fabulous. Dr Buescher explained my surgery and how she's going to send me home on lots of good pain meds and pain catheters in the surgical site called On-Q catheters-see pic below. Maybe even two on each side depending on how tough it is to get the expander under my pectoral muscle. The On-Q Caths stay in for 5 days then she pulls them in the office.
Craziness? I could go home the same day as my surgery. Yep, you read that right. Same day discharge. IF my pain is well controlled 2-3 hours post-op. Is it weird to ask to stay overnight even if my pain is well controlled?

Parker started track practice and comes home pretty beat every day! They even did some Pilates and yoga exercises last week, and boy was he sore that day. Not sure yet what event he is going to do, he seems to like the hurdles. I don't do hurdles, never could. Legs not long enough, not coordinated enough and the thought of crashing to the ground does not appeal to me. Thank goodness he's more coordinated than I am. We took him shopping for the clothes for his dance this weekend, and he looked so good in the outfit we got him! I can't wait to take pics Friday-will post as soon as I have them. He still hasn't decided where they are going to eat yet. Brian and I told him it would be a good idea to find out what kind of food she likes, that would help.

Hailey's club volleyball team took 1st place Saturday at the Parkville Pow-Wow! We are so proud of all the girls! They played so well together-and of 16 sets only lost one! This was their first medal all season-nothing like it being for first place of a Gold Tournament! Hailey had some very good hits and blocks. We still need to work on her confidence and getting her to swing hard every time. The 18's coach said she would be happy to work with her. We are also going to get her out to some camps this summer. She's come a long way with some hard work. We just have to keep her training after club season is over.

Last week was a very sad one, as one of Ethan's former classmates and the daughter of a fellow Police family passed away in her sleep last weekend. Brian and I were out of town when we got the news, and I wanted to get home as soon as possible and hug our little bald guy. We live with the fear every day that we will walk into his bedroom to get him up for school and he will no longer be with us, so Devin's death hits really close to home. My heart breaks for her parents Chris and Sarah. I can't imagine how we would cope as a family, and my prayers are for their comfort and peace in the dark days ahead without their daughter. With a special needs kid our lives become so entangled as caregivers, our identities as Mom and Dad and even siblings are lost in taking care of our kids who cannot care for themselves. It becomes second nature, habit, as commonplace to program a feeding pump, take apart a wheelchair, put on orthotics and oxygen and hearing aides as it is to breathe for us. We would be as lost as if we lost a limb. Please keep the Millsap family in your thoughts and prayers as well.

And just in case I didn't have enough shit going on in my life, I slipped on a wet floor last Friday morning before I got off work and tweaked my right knee. Yep, my bad knee. Since I woke up that afternoon and my knee was swollen and popping and hurt to put weight on, off to the ER I went. X-rays looked ok, just a little bit of soft tissue swelling. Orders to go home, rest, ice and elevate. After doing that it does feel a little better. But off to employee health tomorrow morning I go and see what they want to do. Brian said he was going to just take me out to pasture and shoot me. Put me out of his misery. Ha! No really, if I go MIA this week, send the cops after him.

Ethan has an appointment with Dr Erica, his dentist, tomorrow, and I'm kind of afraid she will need to pull some stubborn teeth that aren't wanting to fall out on their own. I'm a big baby and don't want to watch, so I'm making Brian go with me. He's not too thrilled either. Then a feeding eval at Mercy Tuesday morning.
So, again, a busy week equating to a busy, busy month.

March. In like a lion....

In true Midwest March fashion, it's the 3rd of March and we have feet of snow on the ground! I love it! The cold, I could do without.
The end of February was busy for all of us, and March may just outdo it!
We have been getting everything together for the state for Ethan's Lopez Waiver to start, and with that means all of his annual Dr appointments:
Cardiology- Check (see last post for deets)
Hearing and Speech- yep, Ethan still has a significant hearing loss and needs new hearing aids. Got his molds done, just waiting for his MO Health Net to kick in so we can schedule his ABR -Auditory Brain Response -specialized hearing test-to be done and get his aids ordered.
Endocrinology-this week for Growth Hormone check up
Ophthalmology- this week for annual check
Pediatrician- last Thursday for orders for PT/OT eval at Mercy to see if The bald kid needs an OPM-otopharyngeal motility study-or swallow study-to see if he aspirates. If not, we are hoping to get him back in the pool for Aqua Therapy! And either way, an OT eval to see about some intensive feeding therapy.
On a side note, while at the peds, when Dr Russell came in to see E, we had him sitting up on the table and he remained sitting, unassisted, the whole time she examined him and chatted with us! He was so showing off for her, and she loved it!! So she whipped out her phone and pulled up the Taylor Swift/goat video on YouTube and showed it to him! He cracked up, and so did I! Even though it kind of makes fun of his girl-he still thought it was pretty hysterical. If you haven't seen it, do it, it's quite hilarious!
Then on to Pulm and Ortho in April.

Hailey is playing in VB tourneys about every other weekend. Just came home from a big one in Nebraska-not with any medals though. Then Topeka this weekend, the Parkville PowWow on the 16th, and to Springfield, MO the 23rd. Brian is taking her to the Springfield one and I'm staying home with the boys and dogs because it's just too pricey to board the dogs for the weekend, and Harley hates it anyway. And Parker and E will be bored to tears. Hailey is going to Prom with Jonny in Wichita on April 13th, and we got her dress this weekend. I would post pics, but Jonny hasn't seen the dress yet and she doesn't want him to!

Parker has started Track and Field practice with his first meet on the 28th. Not sure yet what event he will be competing in. As practices proceed, the coaches will find his strengths and decide. He came home pretty sore Friday after all the running AND Pilates! Love it! We have his Freshman-eeks Freshman-meeting tomorrow night where we meet the fall sports coaches and Freshman teachers. Parker has decided he wants to go out for football in the fall, so we will meet the coaches and get all that fun info. Practices and camps start as soon as school is out, and are early! Not sure he knows what he's in for-but he wants to, so we will encourage him!
Oh, and Hailey just dropped the news that Parker has asked a girl to the 8th grade dance! She sent him a text pic of her dress, and she, and her dress are super cute! I wondered why he's been showering without being asked a million times recently.

I had my three month follow up at the cancer center last Monday, and after some abnormal lab work, I got to spend a few days being a complete basket case waiting for more labs and a CT of my chest/abdomen/pelvis. It seems my hormones are really high, which in my case is bad news because my cancer was so hormone receptive, and can indicate a recurrence. We had initially planned to do a uterine ablation, but my oncologist nixed that idea after my lab results came back. It seems the best thing to do is start Lupron injections to stop the hormones. I'm waiting to chat with my NP again tomorrow to set up a date to start these. Oh, my CT was negative! Yeah-woo hoo! Thanks my CT peeps and Dr VT-and Carissa for getting me in and done so quick.

The feeling that something else could be brewing after being a year out was an absolutely deflating feeling. I was literally sick waiting for the results and scan. I didn't tell anyone but my hubby, so I don't want anyone to be offended. No reason to scare anyone, and I know that's all I would have done with no real answers!

Tomorrow I have my pre-op appointment with Dr Buescher at KU for my tissue expander surgery in April! I'm excited and nervous. Then Brian and I are taking a quick trip to Denver this weekend. Nothing major, just a low key, relaxing time with some of my favorite relatives!
We have something going on every weekend in March-trip, VB, track meets, more VB, Stinky's 9th bday and Easter, whew! By the time my surgery gets here, I will be glad for the break!!

Brian is doing well, working and taking care of us. I never do post much about him, doesn't mean he isn't important. We aren't big Valentine's Day celebrators-I don't do candy or flowers, so it meant the world to me to come home to a beautiful hand written note from my hubby.
He is excited for his Annual Fraternity dinner in April, and to see some of his brothers. This will be their 25th year since pledging, so they get a special pin. They have a busy weekend planned, and of course it's the same as my surgery! Oh well, I have friends willing to spend it with me in the hospital so he can enjoy his weekend too. My surgery is the first of the day, so I will be in and back to my room early and then resting, so he should be able to slip away that evening. And there's no way I'm letting him stay with me this time-he was miserable last year. One of my partners in crime is already planning to sneak in a flask and some D'Bronx pizza anyway!

Like I said, March is busy for us-will keep you all updated. And just to prove it's never boring in the Rawley household, I'm going to scrub up the vomit spots from the dog. Yes, the cute little bulldog has a thing for laundry, and has thrown up 2 pairs of my underwear and 2 of the baby's socks tonight. I'm just happy he's able to throw them up, and not getting obstructed. Looks like we will be much more aware of making sure our closet doors are closed from here on out.