Jump!

Hi there.  It's been a little while.  Our computer died and Ellie is nice enough to let us borrow hers.  I'm REALLY hoping that my step-father can fix it.  I talked to him on the phone and he said he would do his best.  Everyone cross their fingers!

Since I last posted, Raymond has had several doctor's appointments.  He saw pulmonology, cardiology, orthopedics and feeding.  The pulmonology appointment went well.  Raymond has been off his oxygen for long stretches.  He's doing great.  He still has to take a lot of lung medicine and steroids but we are definitely heading in the right direction!

Raymond's cardiology appointment also went well.  Dr. Aliquin is wonderful.  He let Raymond play with his pager the entire time.  Raymond was pushing buttons and just happy as can be to have it.  I was worried he was going to break it.  I guess if the doctor wasn't worried I shouldn't have been either.  They did an echo cardiogram and Raymond's hypertension was 5 points higher then last time.  We weren't too concerned about it because Raymond was awake for the echo and asleep for the last one.  Dr. A. totally expected Raymond's levels to be a little higher.  We still have to keep a close eye on everything but again, it went well.

I made Raymond an orthopedic appointment because I was worried about his knees.  They - especially the right - seem to turn in slightly (knock knees).  The doctor took x-rays of his hips and knees.  She said that Raymond has a large lump on his left hip socket.  She said it's bone and nothing that concerns her at this time.  She also said that his hips and hip sockets are formed correctly.  Great!  His knees are also okay.  She did say however that his hip sockets are "floppy".  This is one of the reasons that his knees are turning in.  So we need to work on more strength training type exercises for him.  He can't do those long because he fatigues easily, but we'll work on it as much as his body will tolerate.    

When we went to see Dr. Williams at the feeding clinic, I knew he was going to tell us Raymond regressed.  He had a terrible virus/cold for over three weeks.  He lost a total of 3.2lbs. because of it which is so much for his little body.  We are going back to using the nuk brush instead of a spoon.  Raymond can't handle any substantial amount of food in his mouth.  We really just need the flavor of it to make him salivate and have him get used to swallowing the extra saliva again.  After he gets back in the swing of things with that, we will try again with the spoon.  He'll get it in time.  I fully expect to have several of these set backs. 

Sunday while I was at work Chris had to take Raymond to the ER at Hershey.  His G-tube came out in the middle of the night and started to close.  The opening had to be dilated back open.  That hurts so much.  Poor little guy.  He was so brave and flirted with all the nurses.  He especially likes the blond ladies.  What a character!

We went to the playground the other day with two of Raymond's therapists.

Raymond & Lisa

Can you see Isabella?

Lily was wearing Raymond's sweatshirt

Stacey and Lily went down the slide together

Stacey and Lisa were using a large red ball with Raymond.  They utilized Isabella to help him with taking turns.  He's getting very good at taking turns and being patient while waiting.  I tried to stay out of the way.  Sometimes I can be a distraction to him.  When they push him a little harder and he doesn't like it, he will try everything he can to get me.  He becomes a "mama's boy" at that point.  If he can't see me or I'm at a distance, it's not such a factor.

So Lily and I had some fun in the grass by ourselves.

After we were done playing, Stacey let us borrow a mini-trampoline for Raymond.  When we got it home he wasn't very interested in it.  Lily on the other hand was excited about it. 

 Raymond decided that he would try it out since Lily looked like she was having so much fun.  He's asking me for help in this picture.

 Yesterday, Stacey and Kristen painted with Raymond.

 He really enjoyed it.

This is what happened when Raymond got excited and got a little too close to the easel.

The Masterpiece

 Raymond fell asleep before Stacey even left.  He tuckers out so easily.

Our vacation is quickly approaching.  There were a few changes in the plans.  Chris is taking off of work and going with us!  Yay!  So instead of going for two weeks we will be gone for one.  When we get back I will have lots of pictures to share!  So many exciting things.

Speaking of exciting things, Isabella fell in love with a pair of shoes.  She asked Daddy over and over again if she could get them, and of coarse, he said yes.  : )

Oh so fancy!!!

All three kids really enjoy playing with the Kindle Grammy brought for Raymond and Lily for their birthday.  The other day the free app was a pet store type game.  I thought Isabella would like it and decided to add it to the Kindle.  She was playing it and kept telling me how much fun it was.  While she did that I logged onto the computer to check my email.  Upon opening my email I saw I had 10 emails from Amazon.com thanking me for my orders.  What orders?  When I clicked on one I realized that in order to play the pet shop game, the player has to buy "gems" to get more items for their stores.  Yep, you got it, she was buying gems.  $75 worth in 15 minutes.  I was furious.  NOT at Isabella, I want to point out.  She had no idea what she was doing.  What makes me so mad is that they make these games geared towards children knowing that something like this will happen.  It's ridiculous.  So needless to say, I immediately uninstalled the app.  I explained to Isabella what happened so if something like that should happen again, hopefully she'll ask me about it first.  Later that night she told me she felt so bad for buying the gems by accident.  She brought me several pictures that she drew and said she was going to sell them to make the money back.  What a sweet girl.  If anyone is interested, she has the cheapest one priced at $100.  That's entrepreneurial spirit for sure!  : )

I was asked on Tuesday to be a foster mom to a 2 1/2 year old little boy.  His name is Angel and he has several developmental delays.  I was flattered being asked.  In all honesty, I would LOVE to have another child.  Financially, we can't afford it.  I declined the offer to foster Angel.  I know in my heart, even though he's not mine, that I wouldn't be able to give him up.  Once he would be with our family, it would break my heart to give him up (even if it was to a great family who wanted to adopt him).  I also think it would be very hard for Isabella.  I hope they can find a nice family to place him with.

Miss Lily found the trampoline again today. 

Here is a short video of her "jumping" on  it.
(Sorry - It's sideways)

Until Next Time!

Lots of Love,