Happy Birthday Kaylee

I hope everyone’s Thanksgiving was good!  We stayed home, Grandma Donna, Grandpa Durand and Tony’s family came over to celebrate with us.   Dani chilled in her room when it would get too loud for her. 

Today Kaylee turned 11 years old.  Where does time go?  Grandma & Grandpa gave her a DVD player.  Her and Beans had to try it out this afternoon.  She said she needs to get a bigger TV next, I guess her 13 inch isn’t up to par anymore.

We spent the day doing Christmas crafts and putting up Christmas decorations. 

So far Dani’s tests are coming back normal.  No surprises here!  The doctor is back in the office on Monday and we will see what the next step will be for her. 

Dani’s doctor appointment…

We brought Dani in to see a different GI doctor because her throwing up is getting a little old.  It was nice that we were able to say what our goals are and that he will work as hard as he can towards that goal.  He wants to take it slow but he promised to not run unnecessary tests on her.  He said with a child like Dani he could run 30 different test on her but that would not only cost a lot of money, but it would get us going down the wrong path.   He started with a nuclear study and next Wednesday Dani will have another upper GI done.  After these tests, he will have more of an idea on how to start treating Dani.  But looking on the positive side, Dani is still gaining weight.  So much for failure to thrive!

New Changes in Dani…

We noticed Dani’s cheeks are pinker and she isn’t as pale looking.   Dani will SHIVER again when she is cold.  Dani will SWEAT again when she is hot.  Dani used to be like Dan and had quite the heater.   So, we have been checking her temperature sporadically during the day.  Instead of always running cold, 95.5, her temperature has stabilized.   She is running a normal temp again.  What caused the change in her temp?  Do we call the doctor, well what one; she has quite the list to choose from?  If we call a doctor, will they run a whole bunch of unnecessary tests on her?  Is this a good sign or a sign of bad trouble to come?  Is this a move in the right direction?  This is a typical thought process when it comes to Dani.  Instead of celebrating this new accomplishment, we are always on our toes because we know the shoe always drops…

Kaylee is learning to play the clarinet.  It is kind of like the equivalent of nails on the chalkboard at times.   To make matters worse, Beans got Kaylee’s old recorder out.   Today, they even got Rex howling and running around in circles.  One day, they will master the art of music and we won’t have to witness Rex rubbing his ears against the floor in hopes for the noise to stop.

Well, let’s go by the philosophy that no news is good news when it comes to Dani.  She was holding down her feedings and not crying out so much.  I am going to stress the key word, was.  Luckily, we had made an appointment 3 months ago for a second opinion with another GI doctor.  Unfortunately, this appointment is still 1 ½ weeks away.    She is starting to throw up one feeding.  There is no rhyme or reason to which one she will throw up.  She has some really bad days that all she does is cry out.  It is getting to the point that Dan and I have to decide if we should start medicating her again.  We worked so hard this past year and half to get her where she is, but it is pure torture to hear her cry out in pain.  I don’t know what to do anymore, but I want her comfortable. 

Since Dani is not going to get the RSV shot this year, (thanks to the wonderful insurance) Dan and I have decided to not travel with her.  I know it’s going to hard especially during the holidays, but I don’t want to rely on hospitals and doctors that don’t know her if she codes.  I am not so much worried about her getting RSV, it is everything else the RSV shot protected her against.  I have a feeling it is going to be one long cold and flu season this year.

Brianna and Dan both celebrated another birthday.   Can’t believe Brianna is 9 years old!  We rented a room at the Club House.

On Monday, at the Wellness center, I had to choose between daughters.  Brianna was in Gymnastics and Kaylee was swimming and the fire alarm goes off.   Once the workers stated that it is not an alarm and to get outside, I didn’t know which one to find first.  I was working on my homework outside the pool area.  Luckily, they didn’t make the swimmers go outside.  I saw that some mother hens had Kaylee by them so I went to find Brianna.   This was no easy task.  I found her riding piggy back on her teacher.  Beans wasn’t so lucky.  She was in her leotard with no socks on.  I wrapped her in my coat and took over holding her.  Not an easy task since I was still holding onto my heavy school bag.  Luckily, we got the all clear and got to go back in.  Hopefully, Beans doesn’t get sick…