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Wednesday, August 31, 2011

Halloween

So I know it's the end of August, but Halloween costumes are on sale everywhere (I assume they're getting rid of the ones left over from last year to make way for new ones).  So I was just going to go ahead and get one for Cooper.  But there are just too many options!  I need help!  Please take a look at these and vote for your favorites in the comments or on Facebook. (Or suggest something else.)  Thanks!

Duck
Dragon
Lion
Dinosaur

Tuesday, August 30, 2011

Shots

Today, Cooper had a day of torture.  He went in for his one year checkup and vaccinations.  He got four vaccines: measles, mumps, rubella (MMR); chickenpox; Haemophilus Influenzae type b; and pnuemococcal conjugate.  Plus, he had to get the first of two testosterone injections in preparation for his surgery in October.  Recently, he has been getting some granulation tissue growth under his button.  So, he also had to have silver nitrate applied to that.  Basically, silver nitrate burns away the excess tissue.  You can imagine how that feels.  Right after all of that, Cooper went to sleep and slept for the next four and a half hours.  Poor little guy!  I think he was a little traumatized!

Good news:  Cooper weighs 19 lbs. 4 oz.!!  That is the 25th percentile for a premature baby boy, and between the 5th and 10th percentile for a normal 12 month old!  He's actually ON the curve!  He is also 72 cm, which is also on the curve for a normal 12 month old!  So exciting!  He's never been on normal curves before!!

Sunday, August 28, 2011

Birthday!!

On Thursday, Cooper turned one!!!  I can't believe he is a year old!  And though this has been the hardest, most challenging year of my life, I would not trade it for anything.

Saturday, we had what I thought would be a small birthday party for Cooper.  But, over 30 people showed up!  My little house was packed!  And Cooper got so many cool things!!  He is one loved and lucky little man!

Robin Eiler, Sarah Shelby, and I made the cake!  It turned out great!

How many doctors does it take to have a one year old's birthday party??


Our happy family!

Cooper enjoying his cupcake in his crown.




Genetics

Last week, Cooper had a genetics appointment.  Brad and I have been praying and pondering about this appointment for months.  We had to decide whether we wanted to get genetic testing done on ourselves or not.  We finally made the decision that we would have it ONLY if we could be told whether we were high risk or low risk for having another child with a genetic abnormality.  There is too much blame and guilt that would go along with knowing what each of our DNA results were, especially if we end up being at a greater risk for having a second child with genetic issues.  So this allows us to know what is going on without all of that.  After what I am sure will be a fight with our insurance company, we'll get tested and know more!  Hopefully, we're low risk and we can have more children of our own.

Sunday, August 21, 2011

Dinner tonight

After a long (hour and a half) photo shoot and no lunch, I needed a big, yummy dinner.  And we succeeded!  We bought a BIG (like the size of my head big) sweet potato at the farmers market yesterday.  I really wanted to make twice baked sweet potatoes.  I found a recipe from the Neely's, but I made a few (accidental) changes.  First, I put a pinch of cumin into the spice mix.  This was not on purpose.  I have three spices from San Antonio that are in distinctive white containers: cinnamon, cumin, and crushed red pepper flakes.  The recipe called for cinnamon, but I grabbed the wrong spice.  I had just put a little in when I noticed it smelled wrong.  However, I think it made the potatoes taste even better than they would've otherwise.  The second change dealt with the skins.  They tore when I was taking the potato out. So Brad suggested i put the filling into ramekins.  This was a great idea, but I was upset  that I wouldn't have any skin to eat.  Then I got the great idea to line the ramekins with the broken skin.  All-in-all, it was SOOO good!!
We also had steak with a mushroom and red wine sauce on top.  This recipe is AMAZING!  Last, we had a mango (also from the Farmers market), arugula, and feta salad with a splash of balsamic vinegar dressing.





Oh, and lastly, this is how Cooper has been sleeping lately.  Notice the crossed ankles?  Everything that child does is precious!!


Bad about blogging

Lately, I've been bad about blogging.  So, a quick update is needed.  Coops had 2 doctor appointments on Wednesday.  He had ophthalmology in the morning.  Things seem good there.  The glasses are helping.  His eyes are crossing a little less.  BUT, he may still have to have surgery.  We go back Sept. 28 for one last appointment, and if he thinks he needs surgery, it's looking like it will happen at the same time as his other surgery on Oct. 6.  So, bad that he might have to have surgery, but good that if he does, they'll work it out so he only has to have anesthesia once.  That afternoon, he has a surgery clinic follow-up appointment.  All is well there!  No problems with the button!

This weekend was crazy!  Our good friend Brian came into town Friday afternoon.  We all went to dinner that evening, then watched ridiculous TV (Hoarders) and just caught up with him.  The next day, we went down to the Farmers Market, then had lunch at Flying Fish, where I got a yummy shrimp kabob.


We then drove around and showed Brian some of our favorite places in LR before getting frozen yogurt at Yogurt Mountain.  Cooper REALLY liked the frozen yogurt!  He would open his mouth really wide when he saw the spoon coming!  So cute (and I'm glad he's old enough that he can eat stuff like that!).


Late that afternoon, we came back to the house and made cupcakes (Brian's first time to do so).  He left about 3:30, giving Brad and I plenty of time to get ready for the big Manhattan Party last night.  We got a babysitter (!) and had a great time last night.  Today, Cooper is having a photo shoot for his first birthday.  Can't wait!!

Tuesday, August 16, 2011

Cooper being tickled... again

This one is WAY better!

video

Faker!

Today, when I went to pick Coops up from school, I went by to see his physical therapist.  She had some new things to show me, so she did a mini PT workout on him.  Let me say, he does NOT like to have to support himself on his arms while he is laying on the floor.  He doesn't like it at home, and he certainly doesn't like it at school.  Today though, instead of crying or fussing, he "went to sleep."  He just closed his eyes and gave up.  You could tell he was faking it, because I was trying to tickle him to wake him up and he would smile really big whenever I did that, but he wouldn't open his eyes back up.  So his physical therapist let another teacher hold him, and as soon as he was out of the position he didn't like, he magically woke right back up!  He is one, delayed, and still has the cognitive skills to fake sleep to get out of something!  Love him!

Sunday, August 7, 2011

Cooper is ticklish... and it's hilarious!

He did this much better, but as soon as the camera came out, he got a little shy.  This is the best I could do. He'll grin really big and then when you tickle him, he laughs out loud.  Brad is working a 13 hour shift by himself today, and Cooper did this for him this morning.  I'm pretty sure it just made Brad's day!!
video

Friday, August 5, 2011

Silver lining

I forgot to tell the GOOD news in the last post!  It has been almost 2 weeks since Cooper has had a seizure!!!  Knock on wood (that would be your head; you know it's true).  Yay for no seizures and good things happening in the midst of the bad!

Thursday, August 4, 2011

The Whole Story...

A week ago, Cooper had a "button" put in.  He had stopped eating, wasn't gaining enough weight, etc. so we thought this would be the best solution.  It isn't permanent.  It can come out as soon as Cooper decides he wants to start eating again.  Here is what it looks like:


picture33.JPG.jpg

The little balloon on the end is inside of his stomach.  It is filled with water and keeps the tube in place.  The part that looks like what you blow a beach ball up with sits on the surface.  You take that plastic piece off, attach tube and syringe to it, and the food goes in.  We are still feeding him by mouth 5 times a day.  Everything that he doesn't eat goes into the tube.  Medicine, water, juice, etc. can also go in there.  

We got home from surgery on Saturday, and except for a little pain, he seemed good.  He went back to school Monday and Tuesday.  I picked him up a little early on Tuesday afternoon because he had a clinic appointment at the endocrine clinic.  We were in the waiting room and Cooper started looking like he was going to throw up (he literally has a "throw up" face; his lips get all big and his face gets really red).  He physically CAN'T throw up right now.  In addition to the g tube, he had a nissen (http://en.wikipedia.org/wiki/Nissen_fundoplication).  He can't eat solid food (for 2 weeks), he can't throw up, and he can't reflux.  Unfortunately, I did not have the tube and syringe to feed him.  In addition to using the tube for feeding, you also attach the tube to the button about 20 minutes after he eats to burp him.  It creates a vacuum that pushed all the air out of his stomach.  Since I had no way to create that vacuum, I was screwed.  So I went to the back and explained what was happening.  A nurse started looking for the right type of syringe, while another nurse started getting his vitals.  His temperature at that point was 99.7, but it was his heart rate of 186 and his shallow breathing that was really worrying everyone.  Then the nurse came back with a syringe.  When I attached it to Cooper's button, gas and liquid literally exploded out of him.  It was really disgusting.  I called Cooper's pediatrician to see if I could just take him into clinic, but she was leaving and the clinic isn't really set up to handle respiratory issues.  So we went to the ER. 

By the time we got there, his temp was up to 101.4 and his heart was still racing.  We went straight into a room and immediately saw and attending (one of the benefits of Brad being a doctor).  They put him on oxygen to help him breathe and started trying to figure out what was going on.  They got an x-ray of his chest and abdomen.  They did a CBC to see if he had an infection.  Surgery came down to make sure that was ok.  But in the end, we were admitted because he couldn't get off of oxygen.  Something was going on in his lungs.

In December, when he had his first surgery, he left the hospital only to return 12 hours later with pneumonia.  He didn't have pneumonia this time, but they think he had some viral infection.  When he is intubated for surgery, his lungs are affected.  Since he already has lung issues, after surgery he is just that much more vulnerable to any infection that comes along.  And it kicks his cute little butt. He finally got all the way off of oxygen this morning at 6 a.m.  Usually, they make a patient be off of oxygen for 24 hours before they let them go home, but we came home today around four (another benefit of Brad being a doctor).  

Cooper already has a surgery scheduled for October.  We are going to be pro-active with this one.  We are going to do chest physical therapy starting 2 days before and continuing for a week after surgery.  Hopefully, we won't be back in the hospital with the same issues next time. 

Tuesday, August 2, 2011