ENT

Coops had an ENT appointment this morning.  It went great.  No problems or concerns there.  He is going to be on Nasonex until he's not so cruddy and stuffy.  He is going to have a swallow study in the Spring, but he doesn't need to see the ENT doc until then.  Yay!  I wish all doctor's appointments were that easy.

I went to the pharmacy today to pick up several (4) prescriptions.  It's bad when the pharmacist knows who you are, right?  I walk up and he says, "We'll get those right away Mrs. Schneider."  I'm apparently there WAY too much!

What not to say

I had coffee earlier this afternoon with some of the women (I hate the word "ladies") from my Bible study.  They all have children with some disability or other and we got to talking about what people should not say to a parent of a child with a disability.  Number one on my list was, "I just feel so sorry for you."  No one wants pity and no one wants to be in a position that causes other people to pity them.  Instead, be open to talking to that parent.  I'm fully open to having a discussion with you about my child.  And once you talk to me, you'll see that there is no reason to feel sorry for me.  I love Cooper just the way he is.  Yes, he is challenging.  No, he may never be like other children.  But he's mine, he's what I was given, and that's ok.

And parents with "normal" children, encourage your kids to do the same.  Let your child talk to a child with a disability.  Or, if that isn't possible, let them talk to the parent.  The only way the next generation won't feel sorry for moms with kids like mine is exposing them to kids like Cooper.  Just a generation or two ago, children with disabilities were put in homes and not talked about.  We've come so far as a society.  Let's keep it up.

And really, what is a normal child?  Every child and every parent has issues that have to be dealt with.  No one is perfect.  No child or family is perfect.  I don't feel sorry for you, so please don't feel sorry for me.  If that sounds mean, I'm sorry.  I'm just trying to put things into perspective.

Does this like a kid you should feel sorry for??

Ophthalmology Appointment

Cooper went to the eye doc yesterday.  Physically, everything is fine with this eyes.  The alignment of his eyes are off.  However, this is a developmental issue, not a physical one.  So, the doc decided to postpone the surgery and reevaluate in 6 months.  The doc said he would never do this surgery on a 3.5-4 month old (which is about where Coops is developmentally), because the alignment of their eyes change as they develop.  His worry is that he will do the surgery, then have to redo it once his alignment changes.  Anyway, pray that as he continues to develop, his eyes get better.

Here are some pictures from the weekend that Cooper spent at my parents.  Should've had these on the last post, but...

Cooper and his Podge

Mom and Jason feeding Cooper.  I TOLD them it was easy!!

Blurry, but this is Coops laughing at my mom!  He's so funny!

Bachelorette Weekend

My little sister, Madeline, is getting married!  This weekend was her bachelorette weekend in Nashville, TN.  Cooper stayed with my parents.  I was a little (really) worried.  He is one complicated child, but they did great!  AND, they didn't call me a million times!  The last time I left Cooper overnight (15 hours), I sobbed.  It was awful.  But I did so well this time!  No crying and only a minimum amount of freaking out!  The weekend was really fun, and I can't wait to hang out with all those awesome ladies again in November!!

Video Proof

He won't do this at school, but he'll do it for his mama!!!

Good things

Two good things from today:

1.  Cooper rolled over!!  He had a big poop about 4 this morning.  We changed him (yes, we!) and put him back to bed ON HIS STOMACH.  When we went to get him this morning, he was on his back!!  I don't know how, but YAY!!

Here's a cute picture of Cooper for your viewing pleasure!

2. I started a Bible study.  I heard that the Bible study, BLOOM, had a small group for moms with special needs kids.  I don't know anyone, here or anywhere really, that has a child like Cooper, so I jumped at the chance to meet other moms who understood what I was going through and dealing with.  I was hesitant at first, because I'm not very Bible-sudyy (I made up that word), but I went to day for the first time and had a really great time.  The other women were amazing and so nice.  It was a great morning.

Updates

Lots of updates, so here we go!

Me:  STILL sick, and sick of it!  No more nausea and all that goes with it, but I am still really weak and tired.  My throat hurts, my head hurts, and I just can't eat.  At this point though, I'm having to carry on with life.  Please no visitors; my house is a wreck!

Cooper:  After his sickness, he was having a lot of trouble holding down his food.  We have talked to many doctors and nurses, trying to figure out what was going on.  The short term solution was just giving him pedialite for a while, then working back up to pediasure.  A longer solution might be getting him a pump.  He would eat three small meals a day, then the rest would be pumped into him over a 10 hour period overnight.  Not ideal, but might be what he needs for right now.

He had his urology pre-op visit.  Things are good there.  Dr. C is very nice and understanding about all of Cooper's issues.  He is going to consult with pulmonary before and after the procedure, so he hopefully won't be back in the hospital with pneumonia again after surgery.  He is not going to send him home after surgery, so he'll be watched closely for a while at least.  And he is good with Dr. Ph doing surgery on Cooper's eyes at the same time, if it comes to that.  All-in-all, things are good there.

Brad:  Hates the PICU.  His patients are depressing, he rounds twice, he works really long hours, etc.  BUT, he got to go on the helicopter (and earned $150 extra in 3 hours), there are so many docs on PICU this month that he got an extra day off, and they've been really helpful and understanding with everything going on with Cooper's and my illnesses.

Sick

So in an odd turn of circumstances, I have been sick since Sunday.  I am slowly getting better, but I miss Cooper!  I haven't held, snuggled, kissed on him, etc. since Sunday afternoon.  I did take him to school Monday morning, but I tried to limit my contact.  Brad was able to pick him up late Monday afternoon and, thank you Lord, has today off.  I'm going to rest as much as possible again today.  Hopefully Cooper is prepared for all the snuggling that is coming his way as soon as I'm better!  I've got a lot of time to make up for!!!

10 years

I don't want to go on and on about the significance of this day... it's pretty obvious.  But this anniversary has gotten me thinking about how much my life has changed over the last ten years.  In 2001, I was a few weeks into my freshman year of college.  I was, ironically, in a class about the 20th century... the major events and movements of that century and their impacts on the world (wars, decolonization, etc.).  The dean of the college came in with his computer to tell us what was going on.  That day changed everything, and when we graduated we were called the 9/11 class.

10 years later, I am married, have a one-year-old, and am living in Arkansas.  The past ten years have been filled with highs, lows, and everything in between.  The last ten years make me excited about the next ten years.  Who knows where I will be?  But I, and the rest of the world, will never forget...

Lunch

Since Cooper is now one, and a big boy, he has started eating lunch at school.  For babies, they take their lunch menu and puree it.  Sounds horrible to me, but apparently he loved it!  Today was his first day eating it, and he ate half (this is A LOT for little Coops).  He had a turkey sandwich, peas and carrots, and applesauce.  Pureed.  Monday, he'll have baked chicken, rice, and apples.  So excited for him!!

Home sick

Cooper is having a bit of an off week.  He had a fever Monday night, but it was gone by Tuesday morning.  The granulation tissue under his button looked AWFUL, so I tried to get him an appointment Tuesday at the surgery clinic.  I found out around 10:15 that I couldn't get him in until Wednesday morning, so I took him to school late.  The next morning, the tissue looked so much better (isn't how that always works?), but I took him in to have it looked at anyway,  They gave us gauze with medicine in it and sent us on our way.  While all of this was going on with the button, Cooper still did not seem to feel very good.  He has been really snotty, and his eyes have been crusty.  Brad has proclaimed it a virus.  Then at school yesterday, he had a really bad feed and threw up through his nose and mouth.  He did this again last night at his 10 o'clock feed.  And had fever again.  So he's home, sleeping, today.  Poor guy.  I hope he feels better tomorrow!!

Busy Labor Day

I was talking to my mom earlier today, and I made a comment that we had had a pretty lazy long weekend.  She told me I was crazy, and when I really think about it, I guess she was right.  Friday, Brad had a rare day off.  We bought 300 antique bricks that used to be a chimney in the Heights.  They will soon be a patio in front of our house!  Saturday, Brad worked until about 2.  He got home in time to shower and watch Ole Miss loose its first game of the season.  We made Sangria right before the game and pigs-in-a-blanket with cream cheese and jalapenos.  We took these to a friends' house to watch the LSU-Oregon game.  It takes a lot for me to root for LSU, so I'll just say, "Yay SEC!!!"  Sunday morning, Brad again had to go to work, but he was home before noon!  We DID have a lazy Sunday afternoon.  We hung out with Cooper and straightened up the house.  I made taco chicken chili in the crockpot, and we had some friends over for dinner.  They brought what seemed like a very complicated board game.  We dove right in, and ended up having a really good time playing it (especially since I won!!).  Brad had yet another half day (!) today.  This evening, the Eiler family is coming over for hamburgers and bratwursts.  I'm looking forward to a great ending to our deceptively busy weekend!

Progress

In the past few days and weeks, Cooper has made some amazing progress.  He smiles all the time.  It's seriously adorable.  He is awake more.  He has been awake enough when I have dropped him off at school the last couple of days to eat breakfast.  He also gets lunch at school and "dinner" around 4:30 at home, so he is eating 3 solid meals a day in addition the the five bottle feedings (and we wonder why he is getting so chunky!).  He is sitting up more and more on his own.  He is holding his head up when he is on his stomach better than he ever has before.  He loves to stand; it is his preferred position to be in.  He STARES at things.  He is starting to realize there is a whole world around him and he loves it.  He is tracking side to side and up and down.  He especially likes to track this little yellow ball with a smiley face and a bow that lights up.

Words cannot explain how happy this makes me.  His last spasm was July 25.  The lack of spasms and the fact that he is getting proper nutrition for the first time in months has made Cooper almost a different baby.  I feel peace and happiness and optimism when I think of Cooper.  It has been so long since I have been in this state about Cooper.  It seemed for so long that all he had was setback after setback.  It is wonderful to have him going in the right direction again.

This picture was taken this morning.  He woke up at 8 (he used to wake up around 9:30 on weekends). See how happy he is?  And he is sitting up on his own.  Nothing is behind him!  He was like this for a couple of minutes!  Love it!!!

The Run-around

What I've been up to the last couple of days (I've spent A LOT of time on the phone):

1. trying to get a stander for Cooper- Apparently Medicaid is not covering them.  Lucky for us, we have private insurance.  I found a lady, Barbara King, to help.  She works for a company that bills insurance, but basically takes whatever money they can get from the insurance company and eats the rest.  We're going to get a stander pro bono.  She is also going to get him a bathing chair, since he is almost too big for  his whale bathtub and isn't sitting up on his own yet.

2. finding someone to provide Simply Thick for Cooper- I finally found an infant nutrition company in Maumelle.  They gave me a box of 200 packets of Simply Thick (they bill Medicaid) and the next time he needs a box, it gets shipped to my house.

3. trying to get ahold of Cooper's case manager- WIC provides 113 bottles of Pediasure a month.  This isn't enough.  Medicaid should cover the rest, but trying to get in touch with his case manager is difficult.

4. figuring out how to get pre-authorization from the insurance company for the genetic testing- Apparently, the provider has to do this.  But I've left two messages for the genetic counselor on Cooper's case, and she hasn't called me back.  This needs to get done soon.  Mainly, so I can just stop stressing about it.

5. refilling Cooper's Sabril prescription- He needs a new month's worth on September 8, so now is about when I need to re-order.  Their automated number has been calling me, I say that I am available to talk to someone, and no one is there.  What is that about?  THEY called ME; they should be there!  Finally got it all worked out, though, and the medicine will be here Sept. 6.

Good thing Cooper is really cute and totally worth all this BS!!