A Good Weekend. Day 81: June 24, 2012

Dallas had a decent weekend.  During the days, he played with his brothers; as well as played on the PS3 with Daddy and Bird.  He's done very well physically.  Today, he started hopping on one foot.  And tonight, he did 3 push ups!  Really!!!  We were THRILLED!  This was an amazing feat for him.  I thought it would be many more months before he had the strength to do this!  He continues to shock us, and inspire us daily!  His determination, his will, and his strength are absolutely amazing!

Yesterday, we had a cookout.  He had fun playing with Alex, Tyler, and Mac.  They played "zombies" where they ran around, found zombies, and killed them.  They played "pop goes froggio" a game I bought about a week or so back.  They had a great time together.

He's worked his way up to wearing his compression garments 23 hours a day.  He wasn't able to at night time, but now is able to.  Now, we are going to start giving him baths twice a day, once in the morning, once at bedtime, due to the increased sweating at night in the compression garments.  This should also help with his itching.  There is so much skin flaking off, but that's a good thing, because his new skin is filling in.

There are some areas that look AMAZING, while others, not so good.  I cannot believe how great his arm looks!  His arm was the worst of all, it had the deepest burns, required being excised down to the muscle, had to have Integra placed (due to the severity), had 3-to-1 grafting (the mesh netting look), and is looking the best, is the smoothest, and doing great!  There are other areas that are continuing to get worse/tighter/more rigid.  But hopefully with time, massage, and therapy, everything will work itself out.

The only difficulties we have had this weekend was him sleeping at night.  Dallas has been having a hard time sleeping; waking every hour and a half to two hours, crying and screaming out in his sleep.  I think he's been having nightmares.  I hope it's not about the accident.  Because in his sleep, while he's crying out, he keeps saying "I want to go home; I just want to go home".  I have had to wake him a few times because of how agitated he was becoming.  So HOPEFULLY tonight, he will sleep better.

I'm also wondering if it has anything to do with the Methadone wean?  He is down to 1ml every 6 hours.  At midnight, it goes to 1ml every 8 hours.  Then Wednesday, it goest to 1ml every 12 hours.  Friday, it is 1ml daily.  Then Sunday, he will be finished.  But the docs said that he could experience some symptoms of withdrawal during the wean, so I'm not sure if that's contributing to the sleep problems.

We go tomorrow to Huntington to have Dallas fitted for his face mask!  This time, we are getting the compression garment face mask.  We will get him a camouflage mask, as well as a navy blue one, each to match his compression garments.  He says he actually WANTS to wear these ones.  So we should have them by the end of the week.  That would be WONDERFUL!

Time to give Dallas his bath.  He didn't get up until 3pm, so we waited a little while to give him his bath.  Have a good night!  Hoping to do the same.  :)

Air National Guard: A GREAT DAY!

Dallas' physical therapist, Jessica, has a friend who is a pilot at the Air National Guard in Charleston, WV.  She arranged to have Dallas' meet this guy on Friday.

So Friday afternoon, me and the kids, met Jessica and her kids at the Air National Guard to meet Jody, the pilot.  Dallas was super excited.  As were the other kids.

Dallas in the Cockpit

 

It was wonderful!  Dallas got to see the planes, he was able to get in one of the planes and see the cargo area, sit in the cockpit, and explore.  He was also able to see the firetrucks.

By the end of the day, Dallas wanted to give Jody a hug.  After their hug, Jody pulled his unit patch off his uniform and handed it to Dallas!  His eyes got so big and he had the best smile on his face.  It made me cry.  It was so touching, so thoughtful, and it made Dallas' day.

Not only did Dallas get a lot of PT in during this visit, he had a great time and made a wonderful friend.

Jody told us any time we want to come back to visit, to let him know, and he will arrange it.  It was absolutely amazing!

Dallas, Mac, Kiana, and Tyler with Jody in front of one
of the planes.

Tyler, Mac, Dallas, and Kiana

Dallas and Jody, a special moment shared.

Catching Up: Day 80: June 23, 2012

Dallas in his "Dallas Cowboys"
compression garments.  :)

We have been so busy these past few days.  I've barely had time to breathe.  Dallas is doing alright.  We had a few bumps in the road, but overall, he's doing well.

A few days ago, he woke up and was unable to move his head.  His neck was so stiff and tight, he couldn't even sit up without being in agonizing pain.  When I looked at his neck, where he was saying it was hurting, I was shocked to see all the new hypotrophic scarring that has begun to set in.  It looks so rigid, so bumpy, so thick.  It's terrible to see him going through such a hard time.  And the only way to smooth it out is to perform a deep tissue massage, breaking up (and "popping") the scar tissue.  So I massaged the area for about 20 minutes, and it started to release the stiffness.

The hypotrophic scarring is also starting to progress to the left side of his face.  It is getting more and more ridged and raised every day.  His skin is starting to tighten across his neck, his face, his chest, his right arm (near the armpit), and a few other areas.  This is really starting to limit his mobility, so we have to work harder with him, perform more aggressive therapy and massage, and try and get his range of motion back.  They did say it would get and look worse, before it gets better.  Sigh.  This is so difficult.  Every aspect of this.  Mentally, emotionally, physically, financially, it continues to get harder and harder, draining us more and more.  And it's taking it's toll on Dallas as well.  There are days that he just wants to give up.  He says he sad that this happened to him, that he didn't want it to happen.  That this hurts him.  It's awful to inflict pain on Dallas, and try and explain to him that it will make him better.  But how can we expect a five year old to fully comprehend it?  We can't.

PT on the tire swing

We tell our children, "if something hurts, don't to it" but now, we make him do things that hurt.  What sense does that make (in their minds)?

Not everything is bad news, though.  Dallas is getting around better and getting more brave with each day.  He is able to walk up and down the stairs on his own (though we still stand next to him, and he holds on to the rail).  He is able to jump.  He is walking on his tip toes.  He has even started running!  I'm a nervous wreck.  But he's getting stronger every day.  :)

I will try and keep everyone updated as often as possible.

Thank you all for your continued support and prayers!

Come Join Us!

We will be at Bob Evans MacCorkle/Jefferson location on Tuesday, June 26 at 6pm.

Ashley Boswell and Moms-on-a-Mission have set up a fundraiser to support Dallas.

When you present the flyer, 15% of the sale will go towards Dallas; all proceeds will be used to purchase Dallas the UV protective clothing he needs.

We would love to see you there!

A Rough Start to the Day. Day 76: June 19, 2012

Dallas didn't sleep much last night; waking up ever hour or so, calling me in to get him a drink, to "pat here" (because he itched), to ask me to turn the television on, or to simply say "I love you, Mommy".  So, needless to say, I didn't much sleep either.

We went to PT this morning at 9am.  This was NOT a good day for him, at least in the beginning.  Dallas didn't want to play, he didn't want to stretch, he didn't want to do anything.  He was very difficult and non-compliant.  So Jessica stretched out his arm, at which point he began crying, saying that she was hurting him.  Then he crossed his arms and wouldn't uncross them.  She would ask him if he wanted to play a board game.  No.  Do you want to swing on the tire swing?  No.  Do you want to ride the bike?  No.  Do you want to build a puzzle?  No.  Do you want to walk up and down the stairs?  No.
He just wasn't interested in ANYTHING!

But alas, about 15 minutes or so later, he wanted to get on the tire swing.  So that's what he did.  Holding on for dear life, swinging back and forth, straddling the tire swing.  Spinning in circles.  Swinging back and forth and side to side.  He had fun.  Finally, there was a smile!  He engaged in this activity for about 15 minutes before switching over to a slide.  The Rainbow Slide, is what they call it there.  So he crawled under the slide, climbed on top, and stretched over it.  He had a great time!  Especially since "Bubba", aka Tyler, went with him.

After the slide activity, he played the frog game, and then rode the bicycle.

Once PT was over, he went on to Speech therapy, where they massaged his cheeks, his chin, his neck, and his lips again.  She said that he was redder than last time.  We noticed that as well.  I was telling her about Dallas swimming yesterday, and she said that it could be a chlorine burn.  Really?  Seriously?  A chemical burn on top of what has already happened?  You've got to be kidding me!  Guess we'll be holding off on the pool for a while.

Overall, therapy went pretty well.  It started off rough, but by the end, he did very good.


The rest of the day, Dallas played the Xbox, the PS3, played with Tyler and Mac, spent some time outside on the back porch, playing basketball and bowling, and even helped clean his room.

By the night, Dallas ASKED to take a bath!  Dallas, ASKING to take a bath?  Am I dreaming?  I immediately ran to the bathroom to start the bath.  He has been so reluctant to taking a bath, and now he's asking?  WONDERFUL!  I was so thrilled.  And he did so well in the tub too!

And now, it's time to have him brush his teeth and get off to bed.  Dallas has therapy again tomorrow at 11am.  So he needs to get some rest.

Hooray for Summertime!

Yesterday Dallas was talking about going to the pool to play.  This is the first time that he has actually WANTED to go.  He had talked about it before, but was never really interested......... until now!  So we waited until the sun went down, and headed towards the pool.  The pool here stays open until 10pm, so we figured evening time would be the best for Dallas.  Less people, little to no sun, perfect time for him.  

So we walked (Dallas and Mac rode in the wagon) to the pool.  Once we got there, Dallas was somewhat reluctant, but nothing much.  After a few minutes, and after I got in, he decided he wanted to give it a try.  So he came to the edge and I grabbed him.  "Brrrrr... this pool is cold, Mommy" Dallas says.  (It really wasn't that cold though)  So after about 5 minutes, he was ready to get out and wrap up in a towel.  

Meanwhile, another family came to bring their children swimming.  The mom stared at Dallas.  I know she doesn't know what's wrong with him, but it's the first time I've actually SEEN someone treat him like an outcast.  She told the father that she didn't think the kids should go swimming today.  The dad said it was ok for them to swim, but after about 10 minutes, they left.  Really?  

Anyhow, about 10 minutes later, Daddy came to the pool (he was on a walk).  Once he got there, Dallas was excited about getting in again.  So he got into the pool after a few minutes.  Dallas swam with Travis for about 20 minutes.  He decided that he wanted to try and swim to the ladder by himself.  So he went to take a stroke, and his face plummeted into the water!  We grabbed him up (he was wearing his life jacket the whole time) and he had a terrified look on his face.  It was pitiful.  We explained to him that he was ok, that we wouldn't let anything happen to him.  He said that he almost drowned.  We told him we would never let him drown; that he had to work on building his strength back.  

After that incident, he was ready to get out.  But before letting him get out, we had him walk from one side of the shallow end, to the other.  Wonderful physical/occupational therapy worked in there.  

Even though we didn't stay long, it's another step towards normalcy.  Hopefully Dallas will want to return very soon!!!  

A True Inspiration.

Artist and Copyright Unknown

Dallas continues to inspire me on a daily basis.

Just the other day, this was the conversation that we had.


Me:  Dallas, what do you want to be when you grow up?
Dallas:  An Army Doctor
Me:  Why?
Dallas:  So I can save all the soldiers who are dying.

Really?  What five year old thinks about saving the lives of others?
Before this all happened, Dallas simply wanted to be a soldier.  A great aspiration, something to strive for, most definitely.  But now... NOW he wants to be a Doctor who saves the lives of dying soldiers.  How inspiring is that?

So when you think that you have a rough life... when you think that the world has turned it's back on you...
Think about this little boy.  A child who was burned by oil, a tragic accident.  But has this caused him to be bitter?  NO.  Has this broke his spirits?  NO.  Has this made him feel sorry for himself?  NO NO NO!

In fact, this has actually changed him for the better.  He shows compassion that he's never shown before.  He shows strength that goes above and beyond what I have ever seen.  He aspires to be even more than before.  And he works through anything life throws at him.

Dallas is a child who will never give up on himself.  Dallas is a child who will not let the "reality of life" bring him down.  Dallas will succeed at anything he does in life, and he will strive to be the best he can be.

Dallas is a TRUE INSPIRATION!

Mommy loves you Dallas!!!  <3

Staple-free. Day 75: June 18, 2012

Dallas was running a fever again this morning, hovering around 102 for many hours.  After finally getting him to wake up, he had a bath, which seemed to help the fever somewhat.

Staple that was in Dallas' Right Arm

While I was putting lotion on him and getting him dressed, I noticed the site where the staple is in his arm looked white.  So he took the top layer of skin off of it, and we looked at the staple.  It was closer to the top of the skin than ever before, and it looked infected around it.  Sure enough, it was infected.  After getting the infection out, we massaged the staple until it came even closer to the top.  At that time, Dallas said he wanted to try and get it out, so he tried pulling it out; though that didn't work.  I told Dallas that there was a special tool for us to use to get it out.  So he wanted me to get it and bring it back upstairs.

After getting the staple remover tool, I showed Dallas and he didn't seem frightened at all.  So we tried getting it under the staple, and after a few tries, we had it under.  Dallas said he still wasn't scared; so I told him to count to three and we would get it out.  1........2.......3..........  I closed the removal tool and it crimped down on the staple, pulling part of it out.  Dallas started crying.  I was able to easily remove the remainder of the staple without a problem.  I think Dallas was more upset about seeing blood than the staple actually hurting him.  It was amazing to see the staple out.  To think, that metal object had been in him for all this time, pulling at his skin, causing him to itch and hurt.  Thankfully it is finally out!

Staple Removal Tool

After removing the staple, I called and we cancelled the sedation suite.  It looks like there MAY be another staple in, but if that's the case, we can let it work itself to the top and take it out ourselves.

Dallas' fever has went down some, though it hasn't completely broke.  Hopefully it will be broke before the night ends.  He missed PT today because of it, we definitely don't want him missing another day.

Will update tomorrow!

Super Busy Weekend! Day 74: June 17, 2012

The last four days have been filled with activities.  Thursday morning we left to take Dallas to Winston-Salem for his clinic visit with Dr. Zeller at 11am.  We got out the house late, and I just knew we were going to end up late for his appointment; but to my surprise, we were actually early.  Dallas weighed 48.6lbs, so he's lost some weight since the last visit; but she didn't seem overly concerned with it.  Dr. Zeller looked at Dallas and said he was looking better.  She is impressed with the way his skin is healing (as are all of us).  She said there are still some areas that concern her, such as the blisters on his body, so they have to be watched; as well as how his skin is tightening around his arm.  But for the most part, she seemed pretty satisfied with how he is progressing.  She also tried massaging the staple out of his arm, but was unsuccessful, and he didn't want her taking it out, so she scheduled an appointment with the sedation suite to remove the staple from his arm.  It was scheduled for Monday, July 2nd, the same day we go back to see Dr. Molnar.

After seeing Dr. Zeller, Dallas saw his OT, Dana.  She looked at his mask, since one of the straps broke off, and she fixed it.  She wasn't too thrilled to hear about the fabric mask (from what I gathered) that we are looking into getting him.  She claimed that they flattened out the facial features and didn't give proper compression.  But if that was the fact, why would you use the same fabric compression garments on the body if they don't properly compress?

Anyhow, after the visit, we went to Travis' mom's house for the weekend.  Dallas was pretty busy the entire time, and was excited to be able to play with his cousins.

The drive home was exhausting.  But, on the positive side, we got to pick Tyler up.  So Dallas was thrilled!  He'll be with us for about 6 weeks; and I'm sure it will do Dallas some good as well.

Dallas' Methadone wean is going well.  He is down to 1.9 every six hours.  Originally he was at 3.2 every six hours.  By the end of the month, he is supposed to be off.  That will be great!  Can't wait to have him off of that.  It's such a hard drug, he shouldn't have to take something like that.  So when he gets off the Methadone, I will be thrilled!  We will also be able to remove his Clonidine patch the Tuesday after his Methadone is stopped.  So two meds at once.  How wonderful!  The doctors said that the Clonidine isn't that high of a dosage, so he doesn't have to be weaned off of it.  Great news!

Some more good news... Dallas' new compression garments came in.  They are Dallas Cowboys compression garments.  He LOVES them!  As soon as they are washed and he's wearing them, I'll post a picture.

Day 71: Thursday, June 14, 2012

The last couple days have went pretty well.

Dallas went to PT and OT Wednesday.  He worked for about 30 minutes with OT and was so worn out from the previous days, that he just couldn't do any more.  So after an hour of being there, they let him go home.  After therapy, I took the kids to build a bear and they made a bear for their daddy for father's day.  They had a great time.  After that, Dallas was ready for a nap... so we went home. 

Dallas had his clinic visit Thursday morning.  Dr. Zeller said things are looking good.  The staple still hasn't come out of his arm, so she tried to get it out. Not a success.  He squirmed and screamed and was very anxious.  So she set up the sedation suite for July 2nd, since he's supposed to be there for clinic with Dr. Molnar.   So hopefully it'll be a relatively quick procedure. 
Dana (the OT at wake forest) fixed his mask.  She didn't seem to be in agreement with the fabric mask, she said that they tend to flatten out facial features and don't properly give compression.  But if that's the case, why would he be wearing it on his body?  So we're still going to have him fitted for it.  It makes more sense to wear something that's breathable, as well as comfortable.  It's gotta help more than nothing. 

Dallas' second compression garment still hasn't come in.  I hope it does over the weekend.  He really needs the second one so that he can start wearing them 23 hours a day, like he's supposed to.

Dallas' Methadone wean is going well.  He doesn't seem to be withdrawing too much.  He's sweating more than usual, but that could also be due to the compression garment.

Itching has been getting so much worse.  Dallas is scratching more and more, and has ended up pulling off two big pieces of skin off his donor sites on his legs. Now those spots are hurting him constantly, so it's bothering him more.  His face is also itching very badly.  I'm terrified that he's going to tear skin off his face.  He already has near his ear... so it's something we have to watch constantly.

Hopefully Dallas will have a good weekend. 

Worn Out! Day 69: June 12, 2012

Wrestling  :)

Last night before bed, Dallas and Mac were on the back deck and started wrestling!  Talk about making me a nervous wreck!  I was terrified that he would end up splitting one of his grafts open or getting hurt.  But, he didn't, and they had so much fun!  It was great to see Dallas and Mac rough-house like that.  It starts to lift your spirits, to know that Dallas is getting to be himself even more.

Dallas had another rough night; more nightmares.  Didn't want to get up this morning and get dressed either.  He was completely opposed to wearing his garments, he says they hurt him.  I guess the newness and novelty wore off.  After some fussing, he finally put them on.  He also woke up VERY itchy, and sore.  His right leg was extremely sore this morning, which I am assuming is due to physical therapy yesterday, and all the squatting he was doing.

We had to leave early this morning for PT and Speech Therapy.  Dallas was super excited when we got there.  As soon as we got out of the car, there was a woman walking in the parking lot with her children.  The little boy, who couldn't be any older than 5 or 6, stopped when he saw Dallas and asked his mom "What happened to that little boy?  What happened to him?"  He continued to ask that until Dallas was completely out of sight.  Once the little boy was gone, Dallas started laughing and said "That little boy kept asking what was wrong with me, that's silly, huh mom?"  I told him that it was silly, but he was curious to what happened.  Dallas asked me "Why?"  I told him because he sees something happened to you, and he doesn't know what happened, and he's concerned.  Then I said, "But you're getting so much better.  Stronger every day, huh Dallas?"  He smiled and said "Yea mom, Stronger every day.  That's what Poppa says."

Physical therapy went well, for the most part.  Dallas was VERY active today.  He started out riding the trike again, for about 15 minutes.  Then he played the Pop Goes Froggio game.  He LOVES that game; think we are going to buy it for him so him and Mac can play it together at home.  Not only will it be fun, but it will be good physical therapy as well.  During the game, however, Dallas' blood sugar dropped really low and he almost passed out.  All of a sudden, he started swaying around and saying "I don't feel so good," so we had him sit down, he ate some apple sauce and fruit snacks, and had a juice box.  About five minutes after that, he was fine and was ready to play.  So to wind down, they built a puzzle.

After PT, Dallas did speech therapy.  About 20 minutes of facial massage.  Julie, the speech therapist, said that the scar tissue is starting to soften more, giving him better flexibility in his mouth, and also reducing the amount of pull on his lower eyelids.

Dallas rested the remainder of the day, being completely worn out from PT the last two days; and just think... he gets to do it all over again tomorrow!

Jessica, Dallas' physical therapist for today, called to set up Dallas being fitted for a new face mask.  I should know tomorrow about when it will be.  We will have to go to Cabell Huntington (a little over an hour away) for the fitting.  Hopefully, it'll be sooner than later; Dallas REALLY needs the compression on his face.

Dallas was so worn out today, that he didn't take a bath; so rather than having him more irritated and waking him up completely, I decided to do a sponge bath, so he could continue to relax.  He ended up going to bed at 8:30pm tonight.  Maybe, just MAYBE, he will sleep without nightmares tonight.  Pray for him to have good dreams, please.  He really needs a good nights sleep.

A Great Day at Physical Therapy! Day 68: June 11, 2012

Building a Tower at PT

Last night (at midnight) we began Dallas' Methadone wean.  He will be going down by 10% every other day, with the last dose (supposed to be) given on July 4, 2012.  So it will take a few weeks, but he should be off of another med by next month!

Dallas had a rough night.  All of a sudden, around 3am, Dallas started screaming and crying.  I jumped up out of bed, thinking he had hurt himself, had fallen out of the bed, had gotten up and tripped... something... but he was laying there, screaming and crying in his sleep.  A night terror perhaps?  A wrong move that pulled something?  An effect of the lower dose of Methadone?  I don't know.  We asked him what was wrong, but all we got was more screaming and crying.  After about 20 minutes of this, he went back to sleep.

This happened again when I gave him his 6am dose of Methadone.  He started screaming and crying shortly thereafter.  I hope it's just from movement, because he doesn't really move at night; so perhaps it's just his muscles and joints aching from lack of movement.  

Riding the Trike

Dallas has an obsession with weighing himself every day.  He wants to see how much he weighs (though he doesn't know what the numbers really mean).  Over the last week, he's lost about 2lbs.  It worries me that he continues to lose weight; but I'm sure it's normal for his weight to fluctuate.  However, he has been eating less this week, so we have to ensure that he keeps his calories and protein up.

Physical therapy was at 12:30pm.  Dallas really worked out a lot this session.  The entire hour, he was bending, stomping, riding a trike, carrying different balls, playing games, and more.  Talk about stressing mom out!  Every time he would barely lose balance, I would jump up ready to catch him!  I am a nervous wreck when it comes to him doing more on his own!!!  But, it went very well.  He has physical therapy again tomorrow, and speech therapy to follow.

Playing Games at PT

This afternoon, after we got home, Dallas didn't do too much.  He rested most of the time, guess he really did wear himself out.

Bath time went pretty well.  Not near as much as anxiety as some days before.

Dallas didn't eat much today.  The main things were applesauce and a banana.  A few bites of noodles.  A chicken nugget.  And a small portion of a freezer pop.  Although his food intake is relatively low, he is doing very well on liquids.

Since Dallas had such a busy day, and a very hard night, maybe he will sleep better tonight.  We can only hope!

  

"Dallas is My Hero" bracelets

So, I just received an email from Ashely.  She is the lady putting together the Bob Evans Restaurant Fundraiser on Tuesday, June 26th (all day).  She had an amazing idea that I would like to share with you all.

Her and her daughters (as well as her organization, Moms On A Mission) decided to create bracelets that say "Dallas is MY HERO".

(Will be similar to this)

She said that they will be selling them for $5.00 each; so if anyone is interested, please contact her.  Her email address is:  momsonamissionwv@gmail.com  

All the profits from the bracelet sales will be going towards purchasing Dallas UV protective clothing.  

If you need any further information about these bracelets, feel free to contact her.


Many thanks to you Ashley!  You are truly an amazing woman!!!

Golf Benefit Photos :)

So I finally was able to put up the photos from the golf tournament.  All of them are "as shot from camera," so the white balance may be off, they may be somewhat off centered, etc.  I don't have the time to fix them right now; but I wanted to get them up for everyone to see.

Follow the link:  Golf Benefit Photos


Thanks to everyone who contributed, sponsored a hole, attended the event, and supported us!  It was a wonderful day and Dallas had a great time!  Hope to see you all next year!!!

Day 67: June 10, 2012

Things went pretty well yesterday.  We didn't do the cook out at the park; it ended up being around 90 outside, so a bit too hot for Dallas.  But we did set up a play place on the back deck for the kids.  They now have some soft mats with toys back there to play with.  So that will be good for Dallas, so that he can get out and play, without putting him at risk of too much sun exposure right now.  Mac loves it back there!

I also got the kids some crafts to do.  Dallas and Mac are going to paint a picture later today, and Kiana has more stuff for her drawing.  The OT said that it would be good to hang things on the wall for Dallas to do; such as pages to color, painting, and anything else that requires him to look straight ahead, rather than looking down.  As he is healing, his skin is tightening, and hard scars are forming, restricting his movement.  So it is imperative that we do things that require him to stretch for long periods of time.

His skin is improving daily.  It's amazing how much these compression garments help out!  We really need to get him a mask, because the scarring is getting worse, and causing lumps.  Hopefully tomorrow I can get them to measure Dallas for the face mask and have it overnight shipping.  It took 4 days to get his compression garments in, but maybe if we order it Monday, we can have it by Wednesday (it depends on how long it will take to have them make it).  Hopefully it only takes a day to make the mask, whereas it took three days to make the garments.

We were also going to take Dallas swimming last night, after the sun began to set.  But he decided he didn't want to go.  He wants to go tonight, so we will see how that goes.

Yesterday went pretty well overall for Dallas.  His bath wasn't near as difficult as it has been, and he went to sleep at a decent time (around 10:30pm).  I am going to start working on getting him back onto schedule.

Dallas woke up this morning pretty upset.  He said he was tired because he didn't get much sleep last night; that he had nightmares.  Hopefully it wasn't about the accident.  The good thing is that Dallas doesn't have a problem discussing what happened.  He will freely tell anyone who asks, exactly what happened to him.  He also has developed another blister on his right arm, right near the elbow.  It's been bothering him quite a bit.  But they said that it will be normal for him to develop blisters.  Normal or not, it's got to be extremely painful for him!  Also, the spot that was really raw on his right arm is beginning to get puffy.  It looks like it's turning into granulation tissue.  I sure hope not.

Next week will be very busy for us.  Dallas has PT/OT on Monday, PT/Speech Therapy on Tuesday, PT/OT on Wednesday, Thursday we have to drive to Winston Salem for clinic, Friday will hopefully be a day we can relax, Saturday we will be getting Tyler for a few weeks, and Sunday we will have to drive back home.

I hope the remainder of the day goes pretty well for Dallas.  I know it's difficult for him, but he's getting so much better.

Happy Days are Here Again! Day 65: June 8, 2012

I don't know who had a more restless night; Dallas or me.  We had to spread Dallas' Methadone and Atarax doses out over the course of 2 hours.  So he took about 1ml of Methadone and 2ml of Atarax every thirty minutes.  This made his midnight dose very difficult; and needless to say, I didn't fall asleep until well after 2am.  Dallas slept in our bed again last night.  And every time I moved, he would jerk in his sleep.  It also seemed like he was having nightmares, as he screamed out a few times in his sleep.  There are a few times when he would wake up asking for something to drink, so I would go downstairs to get it, and by the time I got back to the room, he was back asleep.  I finally started drifting off around 3:30am or so, and Mac came running into the bedroom, wanting to sleep in the bed with us.  Really?  Four people in a queen sized bed?  Dallas takes up most of the bed, since he needs the most room.  Mac couldn't sleep between us, just incase he rolled over, we didn't want him hurting Dallas.  He couldn't sleep on the outside, he'd roll right off the bed.  So he slept between my legs, on top of the covers, at the foot of the bed... really?  Dallas had his right arm resting on me (in it's brace) and his right leg propped up on me, and there Mac was, laying between the bottom of my legs.  Oh yeah... that sounds like it has comfort written all over it, huh?  About an hour and a half later, Mac decided he wanted to sleep in his bed.  So off he went.  Did I mention that I didn't have any sleep?

Slushy Magic

Dallas did exceptionally well today.  This morning his temperature was at 98.1.  He had energy, he was happy, he was more like Dallas.

We used the Slushy Magic thing that Mac got for Dallas yesterday.  I was expecting it to be this gimmick thing, that once you buy it, it doesn't do what it shows on television.  But to my surprise, it actually worked.  The boys had Blue Gatorade slushies.  And while it does work, I think that the instructions should be changed.  Line three says:  Replace lid and shake for 1 to 2 minutes.  Then your drink will be a slushy.  It should read:  Replace lid and shake until arms go into muscle failure.  Because that's about how much you have to shake for it to actually slushify.

Dallas' compression garments came in today.  Dallas saw them and was super excited.  So he took off his clothes and TubaGrip and put them on.  They were most definitely a snug fit; but he likes them.  After wearing them for a while, I looked underneath at his leg, it's amazing how smooth his leg is looking!  Just imagine if he had gotten these in when he was SUPPOSED to, a week ago (but due to a missing measurement, he didn't get them until today).

New compression garments
Our Little Soldier!  

I went ahead and ordered another one.  Since Dallas will have to wear it 23 hours a day, we need to alternate between two (for washing purposes).  The only reason we didn't order two to begin with was that we wanted to make sure the measurements were right.  Since it fits pretty well, I went ahead and order another one.  This time, it's a dark blue fabric with silver stitching and will have a Dallas Cowboys Star on it.  Hopefully it'll be here by Wednesday, since we have clinic again Thursday.

We did a cookout with the neighbors, and Dallas had fun!  This was the first time he's actually WANTED to leave the house, so that's good.  We had ribs and hotdogs with a bunch of different sides.  Dallas decided to eat chips and Mac and Cheese, but that's fine, considering he really hasn't ate much today anyways.  He is holding down plenty of fluids, so maybe tomorrow he will eat more.

We are supposed to be having another cookout tomorrow, this time, going to Coonskin park.  We will set up under a shaded area and bring a canopy and some things for the kiddos to do.  Hopefully Dallas will still want to go, because as of right now, he's really looking forward to it!

A great day for a cookout!  :)  

It took an act of congress to get Dallas to take a bath.  After about 30 minutes of trying to get him into the bath, he finally got it.  Once he was in, he was fine... it's just the initial part of getting in that scares him.  Hopefully all these fears will subside soon.  After the bath, Dallas went to bed within an hour.  He needs a good nights rest.  Especially if we do go to the park tomorrow.

Dallas Cowboys!

We want to thank Billy Wright for getting Dallas (and his brothers) a Dallas Cowboy Jersey.

Dallas absolutely LOVES the Dallas Cowboys, so when he saw the jersey that Travis brought home, his eyes lit up like it was Christmas.  He had the biggest smile on his face, super excited!  Just seeing Dallas smile like that again is a gift in itself.

Dallas has been wanting to go to a Cowboys game for the last two years now; I think this football season, we will be taking him.  We wanted to wait till he was a little older, to where he could really enjoy and appreciate the game... we think that he will be ready this year.

Billy, thank you again for everything you have done!  We hope you know how much it means to us, and to Dallas as well.

Two Steps Back. Day 64: June 7, 2012

Dallas' beautiful smile, even with a 102 temp.  

So, remember how I said that it seems that Dallas is taking one step forward and two steps back?  Well, it's happened again.  Dallas had been doing so well over the past few days, we thought things were really starting to look up, when all of a sudden... BAM... we get slapped in the face by reality.  


Last night, Dallas took his midnight dose of Methadone and Atarax and did just fine.  At 2am, Dallas yelled for me.  I went into his room, "Mommy, can I have some apple juice?".  "Of course, I will go get you some".  So I went and got his apple juice and brought it back up, gave him a kiss on the head, and realized how hot his head was.  Then I felt his hands... burning up; as were his arms and legs.  I went to get the thermometer.  His temperature was 103.7!  No way.  I took it again.  103.4!  So I went and got Dallas some Motrin.  He seemed to do just fine with it.  I woke Travis up, and he went to lay down with Dallas.  


This morning around 6am, I gave him his dose of Methadone and Atarex.  He seemed to do ok.  I checked his temperature again... 102.8.  You've got to be kidding me!  So I gave him more Motrin.  He took two sips and started throwing up.  Not a good way to start the day.  


So we got him up and gave him a bath this morning.  We hoped that this would help bring his temperature down.  He didn't want to take a bath, and it did not go well today.  The spot on his chest/belly that is raw hurt him very badly.  He was also complaining about his neck and back hurting.  After about 45 minutes, we got him out, dried off, and re-bandaged and dressed.  


I called Physical Therapy and had to cancel the appointment and reschedule for a later date.  I also called his pediatrician so he could go in to see her.  Maybe she knew what was going on.  So they set an appointment time for 11:15am.  Travis went on to work.


Took Dallas to the doctor.  His weight is up to 50.6lbs.  That's good!  His fever was at 102.2.  Still hasn't changed much.  They did a strep test.  He did NOT enjoy that.  Results came back negative.  She checked his arm, where the staple is, said it doesn't look infected.  So she said that we could go home; to just try and keep his temperature down, and if we have any more problems, to call her or take him into the ER.  They gave him some Tylenol in the doctor's office, after about 1/3 of the dose, he began throwing up everywhere.  Then we left.  The car ride home wasn't much better.  He threw up all over himself.  Poor baby!  So I pulled over and cleaned him up.  


After not getting any conclusion about what could be causing Dallas' fever, I decided to consult with Dr. Zeller.  Gave her a call, and spoke with the nurse on duty.  She had Dr. Zeller call me.  She thinks it's a viral illness.  So of course, there's nothing to do but wait it out.  She said that if he continues to throw up and is unable to drink liquids and keep his Methadone down, we may have to bring him in for IV hydration and IV Methadone.  I asked her about breaking his Methadone up into three doses, given over an hour and a half time span, and she said that was fine.  This way, if he does throw up, it won't be the entire dose.  I also asked if she would call in an RX of Zofran for the nausea.  She doesn't seem to think it will work if it is a viral infection, but it's worth a shot.  Hopefully, he will start holding liquids down, especially his Methadone.  


Dallas rested most of the day, waking up for an hour here or there.  He didn't eat any dinner, or anything at all for that matter.  He's only had a few ounces of liquid today.  His fever has stayed about 101.5 all day.  I went and got his Zofran after Travis got home from work.  We convinced him to take it, and he said it was starting to make his belly feel a little better.  He drank some Pedialyte and was able to hold it down, along with his Methadone.  That's GREAT!  He still didn't eat anything, but having fluid intake is a step in the right direction.  


During bath time tonight, it appears that there may be another staple in Dallas' arm.  I really hope I am wrong, because one staple is more than enough, but I think there is another.  Dallas also didn't do too well with his bath.  He didn't want to take any of the TubaGrip off, nor did he want to take the Xeroform off.  After a good hour of trying to convince him, he finally let us remove all the bandages.  Rather than putting his TubaGrip back on tonight, we put one of the stretchy neoprene-type shirts on.  This provides a little compression, but not too much.  We think the TubaGrip is getting too tight; it's leaving indentions on his skin that doesn't subside for hours.  HOPEFULLY his compression garments will be in within the next day or so.  It will be MUCH easier then, and will provide better compression and support.  


Dallas' next PT and OT sessions aren't until Monday.  They didn't have anything available for tomorrow, and they didn't want to schedule it just in case he was still sick.  I was hoping that, if for nothing else, they could measure him for a facial compression mask.  I think I'm going to call tomorrow to see if I can bring him by so they can measure and order one for him.  He REALLY needs compression on his face; you can see that it is getting redder and is drying out more and more without it.  


Dallas went to sleep about 9:30pm tonight, so maybe he will get a good night's rest; he definitely needs it!  

Day 63: June 6, 2012

Dallas went to sleep at a fairly decent time last night; much better than the after midnight bedtimes.  Last night was also the first night he slept in his bed all night by himself!  Way to go, Dallas!  We, on the other hand, didn't fall asleep until after 1am.  I finally started drifting off to sleep around 1:30am and was awoken by a loud scream, "Mommy!"  I jumped out of bed, thinking that something bad happened to him, so I went in there... "Mommy, can I have some apple juice and a warm blanket?".  I smiled, "Sure Dallas."  So I went to get him some apple juice and warm a blanket in the dryer, and he fell back to sleep.  


Dallas and Mac both slept in this morning, not getting up until around 9:30am.  When Dallas got up, he was complaining about pain in his butt, his back, his right arm, and his legs.  I think physical therapy wore him out yesterday, as he did a lot.  We have to go back again Thursday at 9am for another session of physical therapy and occupational therapy.  I think a day of rest between sessions is a good idea, considering how sore he is the following day.  


I went out to buy a new shower head yesterday, a hand-held one, so that Dallas could start taking showers again; and he still hasn't used it.  Figures.  But, it is a much better shower head than the original one, so that's a plus!  Besides, it'll be used by him soon, I'm sure of it.  


Dallas is beginning to develop more and more blisters on his donor sites.  I really wish there was something I could do to prevent them, but it doesn't seem like there is any way to do that.  Time will heal them, eventually; and in the mean time, Dallas has to be in pain from something else.  Sigh.  


Dallas is eating a little better today.  I was worried yesterday, as he only had a bowl of cheese balls before going out to dinner.  At dinner, he had 1 and 1/2 breadsticks, a fruit cup, and about three bites of spaghetti.  So far today, he's had 2 go-gurts, a handful of cheese balls, and 3 chicken nuggets.  Hopefully he'll eat more tonight.  He really needs to keep his strength up, and build his immune system.  Plus, his body is burning off so many calories through healing, they need to be replaced.  


Dallas needs more medical devices for therapy.  His speech therapist told us we need to get a Z-Vibe.  It's a vibration device that will help with his scarring on his face.  Thankfully, these aren't too expensive, only costing around $35 on amazon.  So I guess we will be ordering one tonight.  We are also going to talk to his Occupational Therapist about measuring him for a compression mask.  I think we will have them go with Barton-Carey, so that he can have a camouflage one, rather than a plain flesh colored or black mask. If we can get it in the camouflage, that will match his compression garments (that should be arriving by Friday).  We really need to get him something for his face, because the longer he's without compression, the more scarring will form.  


I filled out the paperwork for homeschooling Dallas and Mac.  Still looking at curriculums, haven't decided for sure which one to use.  My Father's World was recommended to us by Chad and Annie; and I have come across another curriculum called SonLight (which is MUCH more expensive, but looks like it may be more thorough as well).  I really need to get the ball rolling on this if it is something we are going to do this year.  I want to be completely prepared before the school year starts.  And the fact that I'm not only majoring in Psychology, but in Early Childhood Education as well, should help me through this greatly.  


Bath time was not a good time today.  Dallas was very adamant about not getting in today, trying everything he could to get out of it.  "Mommy, I PROMISE I will take a bath in the morning."  "Just let me watch this one more show, and THEN I will take a bath."  It took about an hour to get him into the tub tonight.  Dallas is getting more "pimples" on his back, his neck, and some areas on his cheeks.  Dana, the OT, said that it was his oil glands building up underneath the new skin.  Great... five years old and already suffering from acne problems.  She said to apply a warm washcloth and it will come up; that didn't work tonight.  


After Dallas' bath, I got his dressing back on and his PJs on.  He said he was tired and wanted to lay down to rest, so I put him in his bed.  He also had some apple juice and grapes before dozing off to sleep. Dallas fell asleep around 9pm tonight.  That's good.  He will need a good night's rest; tomorrow's therapy will be more intense than Tuesdays.  


Have a good night!  Hoping Dallas will do the same!  :)

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.  

Homeschool

So recently, Travis and I decided that homeschooling the children would be the best thing; especially with everything that has happened with Dallas.  


Dallas is supposed to be starting Kindergarten this year; however, he is unable to attend school for the 2012-2013 school year.  The doctors think that he may be cleared for public school by the time school rolls around; however, with the increased risk of infections and injury; along with Dallas' self image, we have decided that homeschool would be better for them.  


We have toyed with the idea of homeschool for many years with our older kids; but in the end, each of them have went to public school.  As the years pass, we realize more and more that our children are being exposed to far to many negative things in school, they aren't receiving the quality education that they should be receiving, and we aren't spending as much time with them as we would like.  So not only are we thinking of homeschooling the younger boys, Dallas and Mac; but also Kiana as well.  


Dallas and Mac are excited about starting homeschool; and Travis' cousin, Chad, informed me of the program he and his wife Annie, use for their children.  After doing some research, My Fathers World doesn't look like a bad program; in fact, it looks like it will not only help our children with academics, but with learning about Jesus as well.  


I will continue to do more research, and if anyone has any suggestions, links, or any other information that may be helpful; please let us know!

T.G.I.Friday's Fundraiser

A member of my husband's work set up a fundraiser at the SouthRidge location T.G.I.Fridays in Charleston, WV.  Every person who eats at Fridays on Tuesday, June 5, 2012 will have up to 20% of their check total donated to The Dallas Ridings Benefit.


I hope that this is something that will have a good turnout, as Dallas has a tremendous amount of needs right now.  But we are not greedy, anything will help him.


We are so thankful for Friday's for allowing this, and for Billy Wright, who created this in honor of Dallas.


Travis and I will also try and take Dallas and his brother and sister to Friday's tonight in celebration of this event.


Thank you all for your continued thoughts, prayers, and support during these trying times!

Day 61: June 4, 2012

Dallas had a very busy day!  We had to pack up to get ready to go to clinic and travel back home to West Virginia.  Dallas was VERY reluctant this morning to take a bath (this is something he simply didn't want to do today; even more so than usual).  He has been saying that he wants to take a shower (which is getting back to his normal self), however, he needs a special shower head to enable him to take showers.  So we will get him one of the handheld shower heads so he can start taking showers again.
Finally, after about half an hour of battling with him to take a bath, he got in.  He screamed due to some spots being raw, and it stung for the water to touch those areas.  There is one spot in particular that is beginning to worry me; a spot on his stomach.  He was so itchy one day that he rubbed so hard, he rubbed a raw spot onto his skin.  Well, over the days, it has progressively gotten bigger, and more painful for Dallas.  After seeing it today, it is about the size of a silver dollar, and looks like an area where he rubbed the skin graft off.  So now we're not sure if it is an area that will have to be regrafted or not.  Dallas is also getting more raw areas on his donor sites (some due to itching, others due to sitting and movements like getting in and out of bed, a chair, his clothes rubbing, etc).  Hopefully these will clear up sooner than later.  It seems like when one area clears and is getting better, two more bad areas appear.  The spot on Dallas' arm (where it looks like it could be an infection) also appears to have gotten harder.  The hole looks a little bigger, and it's more swollen.  Thankfully he's seeing Dr. Zeller today!


We had to take him to his clinic visit, back at Wake Forest Baptist Hospital to follow up with Dr. Zeller, Dr. Molnar, and his OT, Donna.  After an hour and a half drive there, Dallas' anxiety rose.  He was afraid the doctors were going to hurt him.  But after arriving, some of Dallas' fear subsided, especially after seeing a woman that was there due to burns.  Dallas looked at her and said, "Look, she was burned too.  She's here to see here doctor because she's getting all better".  It was a relief to see that he didn't look at her disfigurements at all, he saw her as being injured, he saw her as getting better, he saw the positives.


There was a moment when we checked it where I had to collect myself and calm down.  When you go into the clinic, there is a board of doctors listed for the day and assigned to certain clinics.  Two of the doctors names were Dr. Burn and Dr. Crisp.  And one of the people who came in said that those doctors should be the "burn" doctors, since their names are Burn and Crisp.  I couldn't believe it.  How much compassion can one lack?  It took everything I had not to walk over there and give them a piece of my mind.  And to say something like that WITH burned patients in there?  REALLY?  Some people really amaze me!


Dallas' weight is up to 51lbs; a gain of about 3lbs since leaving the hospital!  Great news!  We were worried about this, especially since there are some days when he only eats a small meal, nothing more.  But it appears that it's not affecting his weight gain (by much).


Dr. Zeller went came in to see Dallas and he was pretty reserved; only saying that he didn't want to take his bandages off.  He was terrified of taking them off and the bandages getting stuck and hurting him.  But Dr. Zeller wanted to see those areas, so we had to talk him into taking them off.  We started with his torso; and he panicked.  He was so anxious anticipating the pain, that it made it very difficult to remove the TubaGrip from his chest and stomach.  Finally, we were able to remove it, and she had a look over his body.  She said that everything was looking great with his back, his flank, and his chest.  The granulated tissues on his upper back/lower neck are getting smaller, and she was happy to see that.  She said that many of the areas are smoothing out nicely.  We showed Dr. Zeller the area on his stomach that concerned us, and she said that it did look like part of the graft was lost there; she stated that the grafted skin is so much thinner than your regular skin, that it's easy to shear it, and cause graft loss.  So she said that she will watch there area, but she feels confident that because it isn't an extremely large area (I guess to her, that's not a large area; to me, it's a huge raw spot), it should heal on it's own.


Next, we took off the bandages from his right arm.  Dr. Zeller was again, impressed at how well it is healing.  She looked over his entire arm; and while there are some raw areas, she said that overall, it looked very good.  We had her look at the spot that concerned us, and after examining it, she noticed a small silver spot, it's a STAPLE!  There's yet another staple that was left behind!  No wonder it is hurting him so much!  She said that sometimes, they get buried under the skin and will try and work themselves out; and it appears that this is what is happening.  It's still too deep to take out right now, so she gave us a staple remover tool, just incase before his next visit, it's close enough to the surface to take out.  Otherwise, she will either try and do it in the next clinic, OUCH; or she said she could set up the sedation suite to remove it.  The downside to that, is that he will have to have an IV put in, he will have to be in a twilight sleep, he can't eat for 12 hours leading up to the sedation, and he will have to be monitored for 4+ hours after waking.  So hopefully it will work it's way completely out, or at least enough to the surface that we can remove it.  On a positive note, after Dr. Zeller examined his arm, she said rather than setting a date for regrafting some of the areas, she would like to watch it; that she feels some of the areas will heal on their own over time and won't require grafting.  So he's not out of the clear on his arm yet, but it was definitely some good news to hear.


Same with his leg; she said the graft looks great.  The small spot on his knee (where he hit it on the edge of the tub) is getting smaller and looking better.  So she set a future clinic date for 2 weeks out, rather than just a week!  That's wonderful.  Great news for us.


After Dr. Zeller saw Dallas, Dr. Molnar examined his face.  He said that things were looking good.  There are some areas that concern him, such as the tightness in his chin, jaw, and neck; as well as the way his eyelids pull when he looks up or opens his mouth.  But overall, things look well.  It wasn't as thorough as an examination as what Dr. Zeller had with Dallas; but I guess it's good news for him.  He also set his next clinic date for a month out.


Then Dana for Occupational Therapy came in.  She had to do the last measurements for his pressure garments (as she forgot to take them when he was released from the hospital).  She also checked his mask and made some adjustments to it (and there are more that have to be made).  She said that he looks like he is doing well, he is getting around better, moving his muscles in his neck and arms better, and was pleased overall by his progress.  She said there was a lot of tightness in his neck, chin, and jaw; so he should benefit from the Speech Therapy that his PT and OT docs want to set up here.


Overall, we feel that this clinic visit went very well.  We had some good news, some bad, and some mediocre; but there are so many positives to be thankful for!  Dallas continues to get better with each day, and we know that this is just the beginning of his recovery.


After clinic was over, about a 3 hour visit, we continued on our way home; another 4 hours to go.  The kids wanted ice cream, and they did well at clinic, so we stopped at TCBY/Subway to get them some dinner and dessert.  Dallas wanted to go in and eat; and of course, we noticed some of the looks.  But Dallas just shrugged it off, he didn't let it bother him (at least not as far as we know).  We spent about an hour there, so that added more time to the trip home, but it made them happy, and it was a great step in the right direction for Dallas; as it is getting him more and more into normalcy.


On the ride home, Dallas slept most of the way, Mac played his new video game, and Kiana read her books and listened to music.  It was a good ride home, long, but went very well.


Overall, today went great!  A few bumps in the road, but definitely a good day!  Hopefully tomorrow will be good as well; considering he has physical therapy and his speech evaluation at 9am.  

Day 60: June 3, 2012

The last couple of days have went well.  Yesterday was Dallas' golf benefit.  There was a wonderful turnout.  We didn't expect there to be as many people as there were, and we thank everyone from the bottom of our hearts for everything they have done for Dallas.  At first, Dallas was nervous to be there and didn't know what do to; but after a while, he did much better.  Dallas had a great time and we were surprised that he stayed the entire time.  We took him on a golf cart ride around the course and he got to watch some of the other golfers.  There was a moment that was really touching to us; Dallas told everyone:  "Thank you all for coming".  It was so sweet.  It was a very long and tiring day for all of us, but it was worth it to see the smile on his face, and to see all the support he has! 


After the tournament, Dallas (as well as some others of us) were hungry, so we went to a Mexican resturant for dinner.  Dallas did well going in, but I didn't do so well.  I saw all the looks people gave him.  It's awful to see people stare and gawk at him.  I know some people are concerned with him, curious to what happened; but others look at him in a way that makes it uncomfortable for him.  It's horrible.  I ended up crying at the table because I felt so bad for him.  But it's something that we are going to have to deal with for years to come; and something we will have to help Dallas get through. 


This morning we went to Billy's church, New Beginnings.  It was wonderful!  Dallas was completely scared and nervous, as well as tired from the day prior; but everyone was so inviting and welcoming.  It made us realize, once again, how much support and love Dallas (as well as the rest of us) have.  Many thanks to everyone there! 

We also had Mac's birthday today.  He will be four tomorrow, so we wanted to make sure to do something special for him as well.  Mac is having a very hard time with everything going on, to the extent that he says he wants to get sick and be in the hospital; so it is important that we show him the time, care, and attention that he needs.  Mac had a great time, as did Dallas.   


Tomorrow Dallas has clinic.  He is going to see Dr. Zeller and Dr. Molnar, as well as his Occupational Therapist, Dana.  They want to make sure he's doing well and looking good; and we think he is.  His skin is looking so much better in so many areas.  However, more and more ulcers/blisters/open areas are appearing on his body.  He has many of them on the back of his legs as well as a few on his back, a large spot on his stomach, and some other areas here and there.  They are starting to hurt him very badly, so hopefully they will heal soon. 


We were also worried about a spot on his grafted arm, it looks like it is getting infected.  I am praying that it was bad lighting, or just something in the process of healing, but I'm worried because around the area is very hard and sore to the touch. 


On a positive note, Dallas has been weaned off his Ativan (the replacement for the Versed).  So now he doesn't have to take medicine at 3am (which was pretty hard on him).  So that's four less doses of medicine a day, and one less medication in his system.  They won't start weaning the Methadone until after his next grafting surgery, so it will be a little while. 


Hopefully all will go well tomorrow!