Bad Blogger

I'm so behind on blogging, but for good reason.  We have therapy sessions every day now.  The laundry from our weekend getaway was enormous for a family of four.  I'm thinking of wearing the same clothes a few days in a row from now on.  Monday, I was full of energy.  I had therapy sessions with Sadie, ran errands, kept an additional 4 children in the afternoon, then prepared a chicken fried steak dinner for Greg at 7 pm.  I started slowing down by Tues/Wed.  I wish I could have that much energy every day.  Thursday evening, I was welcomed by a little food poisining (not going to mention the establishment because I know better than to eat fast food).  Nothing like having your seven your old and two dogs standing next to you while you vomit.  Ben has been talking about it non-stop.  He may need some therapy.  Yesterday, I stayed on the couch most of the day and drank around 2 liters of water. I didn't even bathe.  Greg ran a bath for me yesterday. and I never made it to the water.  He ran another one for me this morning and said "today's the day". Ha!  I promise to take a bath and get dressed today.

Sadie update: Her metabolic tests from the geneticist have come back negative. We are still waiting on a few other tests, and the we are done!  I just want it to all be over and accept her for who she is.  On the other hand, we need to run these tests to make sure there is not some medication or diet change that could help her.  She will also be fitted for AFO's next week.  These are braces that help stabilize her ankles so she will stand better and learn to walk.  Gulp.  It always seems like one thing after another, but if it will help her, I'm on board.  All of these recent appointments and changes have gotten Greg and I a little down.  We are going to see our priest, Father Kevin, on Monday for some spiritual guidance.

This morning, Ben has built about ten forts for the dogs.  They always escape, but he is having a great time!

Weekend Getaway

First, let me just say that my family is amazing.  My sister, brother-in-law, and mom all came through this weekend and gave Greg and I a wonderful weekend that ALL couples need.

Friday evening, we dropped the 2 children and 2 dogs off at my sister's house in Round Rock.  We then headed downtown to our hotel room, which had an amazing view!  To our surprise, my brother-in-law had stocked the fridge and laid out yummy snacks ahead of time.  Thirty minutes later, a waiter arrived with chocolate covered strawberries! I may have teared up :)  We made it to dinner around 10 o'clock.  Those who know me, know I rarely make it past 9 pm!

Saturday morning, we slept in.  Ok, so it was only 9 am, but that is HUGE considering I normally get up around 5:30 am.  We headed down to the UT campus, so I could show Greg my old apartment.  It was an efficiency and sooo tiny, but I worked while taking a full load to pay my rent (sometimes 18 hours), and I am so proud.  Just had to get a pic.

We were then off to the Iron Cactus to eat and watch the game.  UT lost :( 

After a nap, we watched the Husker game and they won!  Yay!

Later, we rode a rickshaw to Alamo Drafthouse for a movie/dinner/drinks.  So fun to dine in a theater!

This is our driver :)

Then, we hit a few bars on 6th Street.

Here I am dancing on the bar at Coyote Ugly. So good to mark this off of my "bucket list".



Sorry these pics are so small.  I seriously need to buy a new camera and not use my cell phone.

This Week Has Flown By!

I can't believe it's Friday already.  We have had such a busy week (as usual).  Sadie and I were sick at the beginning of the week.  I forgot how difficult it is to care for a child when you are ill.  When your child is feeling poor, it's even worse. One day, I would just crawl over to the DVD player and put on movie after movie.  Luckily, we are all better and have gotten through the week.  Sadie's EEG was normal.  We went to the geneticist and it was pretty intense.  Such a detailed examination, but, luckily, no obvious signs of any specific syndrome or disease.  We are just ruling out a few more syndromes, and then we will be finished with all testing.  So far, all has been normal.  No fun watching your baby be poked and prodded constantly.  They took three vials of blood, and she was such a champ.  That hurt my heart a little bit.  It's sad that she hardly even cries any more with blood draws or strangers touching her.  We had PT this morning.  Sadie was screaming initially, then finally gave in and started  to use her hands.  I absolutely love her PT.  She never gives in or gives up.  It made me realize I need to be more firm with Sadie and her goals.  She is just such a stubborn little thing.  Luckily, we won the "battle of the glasses".  It's far from over, but we will continue to win these small battles.  This afternoon, we have a new speech therapist starting therapy with Sadie.  We have moved her OT/Speech from Tyler to Longview.  It just makes sense.  She will also have a developmental specialist come to the house to "play" with her.  I am just so happy that she is rarely sick and is happy most of the time.  My heart breaks for those families with different circumstances.  She is such an amazing blessing to our lives.  I don't know what I would do without her.  We are doing a Bible study at church, and one passage from Beth Moore was so relevant to my heart. 

"The truth is, God uses change to change us.  He doesn't use it to destroy us or distract us but to coax us to the next level of character, experience, compassion, and destiny."

"The God who began a good work within us continues it throughout our lifetime and will finish it when we meet him face to face."  Philippians 1:6

Sadie trying to eat Ben's little stretch brain he received as a reward at school.  So gross, but perfect for Halloween! :)

My Sweet Girl!

My Sweet Boy!

Pumpkin Patch

EEG

I was just now able to upload Ben's regatta win. We were so excited!

Now, on to the EEG. Two words: NO FUN.  There is always humor in stressful situations.  When the pager went off around 8:30 am, I was asleep in the chair.  I was so disoriented that I almost fell down, and they asked me if I needed a wheelchair.  Nice. We both woke at 3 am,  so by the time the tech started mapping her head and attaching electrodes, she was hysterical.  Listening to your child scream for 30 minutes straight and watching tears stream down her face is horrible.  I feel so bad for those mothers out there who go through this weekly or see their child in pain constantly.  I can't even fathom what they go through. 

Once the electrodes were on and no one was touching her, she was awesome.  Passed right out.  Thank you God.  If I had to go through it again, I would need a sedative.  Of course, I was standing over the tech's shoulder the whole time asking if everything was normal.  His response?  "The doctor will give you the results, ma'am."  I already knew the answer, but sometimes I can break people down enough to give me a "looks normal to me".  No such luck.  She has no signs of seizures, but the docs are just ruling everything out.

Before

After

And then we went to breakfast and took long naps and all was better.

2 Corinthians 4:16-18:

“Therefore we do not lose heart.

Though outwardly we are wasting away,

yet inwardly we are being renewed day by day.

For our light and momentary troubles

are achieving for us an eternal glory

that far outweighs them all.

So we fix our eyes not on what is seen,

but on what is unseen.

For what is seen is temporary,

but what is unseen is eternal.”

Lovin' This Weather!

We had an early start this morn (thanks to Ms. Sadie), so we saw daddy off to work and walked on the new trail to the park around 8 or so.  Ben walked Louis and I strolled Sadie.  Poor Louis was so worn out after his long walk! There was another Boy Scout troup at the park, so Ben made a new friend! We arrived back to the house after an hour and a half, put Louis in his kennel and brought daddy and his co-workers some fresh cookies from the local bakery.  We then grabbed a quick bite to eat, and now Ms. Sadie is napping soundly and Ben is drawing.  Sometimes Saturdays are so perfect.  Ok, it would have been REALLY perfect if baby girl had slept past 6 am, but I'll take it.

 

 

 

 

I haven't updated on Sadie in a while, so here goes...
She now has 7 doctors (pediatrician, neurologist, geneticist, opthalmologist, chiropractor, pediatric dentist, and development pediatrician) and 5 therapists (6 if you include her horse Chico, and I don't see why he should be left out).

Whew! That's a lot. 

She is FINALLY wearing her glasses all day, but it took some serious fighting.  That girl is stubborn!

She has an EEG and some more genetic testing coming up.  Please pray that she cooperates with the EEG.  We were instructed to get her up in the middle of the night, so she would just pass out during the test.  Should be a party!

Otherwise, she is healthy and happy and loves to be around other kids.  Louis is always next to her the minute she wakes up.  He is such a protective dog.  He doesn't even flinch when she pets him HARD and pulls on his ears, etc.

Happy Friday!