Day 62: June 5, 2012

Dallas had a decent night.  He wanted to sleep in his own bed last night, so we put him in there, but that didn't last long.  About two hours later (after many episodes of cartoons) Dallas got into bed with us.  About an hour later, he finally fell asleep (around 1am).

This morning, we had to get up early to take Dallas to his Physical Therapy and Speech Evaluation.  At first, Dallas was very reluctant to do anything, clutching onto me.  He was terrified of his physical therapist, Jessica.  It took him much longer to warm up this time, but I think a lot of it had to do with the fact that she started moving his arms and legs around without really introducing herself.  He didn't have the trust built up with her.  Dallas hurt himself during PT today; while he was sitting on the mat, his arm slipped and his hand (that was burned) slid over the velcro on the mat.  He instantly screamed out in pain and started to cry.  His hand is so sensitive right now, that even the slightest scratching/touching/etc can cause excruciating pain.  I felt so bad for him.


After a while, he began to do better.  He found a huge ball that he wanted to play with.  So he pushed it around the room, then through the doorway (having to push hard, as it got stuck).  He played some board games, did some stretching, and some other movements.  Today was also the first day that he laid on his stomach, supporting his head/chin with his hands.  The physical therapist said that was a good stretch for his neck, since there are areas on his face and neck that are starting to tighten really bad.


After physical therapy, Dallas went to see a speech therapist, Julie.  She let him watch SpongeBob, since all she did today was massage the hard areas of his cheeks, chin, jaw and neck.  She showed me how to do this, so that I can continue with it at home.  The massage will help with loosening the scars on his face.  He will have to do this for a while, though we aren't sure how long speech therapy will last.


Physical therapy wore Dallas out.  He started falling asleep before even getting to the car.


We took Dallas to T.G.I.Fridays tonight.  He did very well there.  He wasn't too reluctant to go in; as he usually is, so perhaps he is getting more used to everyday life in the public?  He wore his mask inside, only leaving it on for a few minutes before ordering Spaghetti and a Fruit Cup.  We went to dinner with our neighbors and had a great time.  Travis saw many people that he knew there, and one of the women that worked there said that this was one of the busiest days they have had in months!  How wonderful is that?!  Again, we would like to give a special thanks to Billy Wright for organizing this fundraiser for Dallas; it really means a lot to us!  And thanks to everyone that showed up in honor of Dallas!  After dinner was over, Travis went to put Dallas' mask back on and one of the straps popped off, causing a metal part to hit Dallas in the face.  He screamed!  I don't blame him.  This ended up causing a welt on his face.  Another painful moment for Dallas, as if he hasn't already suffered enough!  


I was so mad!  I wasn't happy with the mask in the first place, it looked like a joke.  Seriously.  All the research we have done, it seems that most places use fabric compression masks now, neoprene, with silicone inserts.  So why in the world did this OT use a plaster mold to create a mask for Dallas out of plastic?  It just didn't make sense.  It's hard, it's uncomfortable, it causes him to sweat tremendously, and now, it caused him injury?  Really???  Thankfully, the PT Dallas saw today said that they were going to look into getting a Jobst (compression garment mask) for Dallas.  Maybe he will be more willing to wear something that doesn't cause so much discomfort?  Guess we will find out.  


Overall, Dallas had a busy, difficult day; but he did well.  His wounds are healing better, he is getting stronger, and he's doing better overall; but it seems like this will be an uphill battle for many years to come.  


We have looked for support groups in our area; something to make Dallas feel more comfortable, as well as something for us.  But it seems that there is nothing in our area.  It's sad that there are so many support groups for Down Syndrome, Autism, and other childhood disorders, but burn support groups are almost nonexistent.  I guess because it's something that isn't as prevalent.  Nevertheless, a good support group would do some good.  Something I'm looking into doing in the future.