Thursday, June 30, 2011

Funny Things

So Lizzy farted (passed gas, pooted, whatever word you want to insert here) in the chamber today! Yea....with no way out and being claustrophobic it was a nightmare. I had a crossword book in there and was able to "fan the fart" right back at her. Don't think she cared one bit. I apologize if I was not very classy with this first paragraph. From here on, I promise I will be....try to be:-)

We had the morning to relax. Her first dive was at noon with Damon so we went to Target and bought her a new rattle for the chamber and some new pacifiers. Went to KFC for her. Individual mashed potatoes and TWO individual mac and cheese. Yes, she ate every morsel of food.  She is the heaviest child we have seen. There is a young girl who is 17 and is 46 pounds! Lizzy is 77 pounds! What? C'mon, she is a healthy 77 pounds!

I did the afternoon dive. Before I got in the chamber, Damon asked me " Do you need some ice? How about another pillow?"  Hahahah....I had to laugh. This is what HE needs while in there! I just jump on the bed and they roll us in!

We have noticed that she seems to understand that she has little room to move. She gets in the chamber and just plays with her toys. It does stay warm in there but it is tolerable. Again, we really won't see anything until around dive 20. That is next Friday. Patience.

Here is a video of her in the chamber with Damon today. You will see that she is pulling at her ear. Dr. Pete (Doc in charge) said it looked a little pink when he looked in there. He said it should be fine tomorrow.

I have added some websites for you! They are on the right side of the blog under Great Links. The link to Hyperbaric Therapy is where we are in Hilton Head.

We are fine with receiving texts or emails during the day. If you have specific questions, just let us know. We love hearing from all of you. We come home for the weekend tomorrow. Then we go back Sunday night! Love you all!

Wednesday, June 29, 2011

This and That

We have been getting requests to post something everyday. We understand that many of you know Lizzy and us personally so it's....well personal. Would you believe that this little blog has been viewed over 300 times in just three days! People are reading this blog from Mexico to Germany! So, although, each day may not bring anything exciting, I will post. You have my word.

We have settled into a nice routine. Damon takes the morning dive and I take the afternoon dive. So we get to the clinic about 8:50 and they are diving by 9:00. Jack and I just hang out. However this morning, I forgot something very important. Lizzy's pacifier. I started to panic because she needs it for the first fifteen minutes and the last five minutes. When you start a dive you feel the pressure and you just continue to swallow or yawn before your ears pop. Lizzy doesn't know to do that so she just sucks her pacifier. I immediately said "I will drive back and get it!" Damon grabs my arm and says "babe, she did fine with me yesterday.  She let it fall out of her mouth quite a bit." Brian (guy in charge) tells me that he will take them "down" slower so she won't be able to feel it.  Well, she did fine and I made a stink for nothing. I am a creature of habit and if things are not the exactly the same (when it comes to Lizzy) I get anxious. I just kept telling myself to breathe!

We came back to the hotel and I fed Lizzy lunch. Damon decided to take Jack to the beach for a bit while we were diving. I felt okay at the time. Once again, I started getting anxious without Damon there to set us up before going in. Breathe Lisa! We were fine and Lizzy didn't have a nose bleed this time. She has never felt pain from them but you just feel so bad. When she rubs her nose, she smears it and looks like she had been punched. looks painful.

She is sound asleep right now. Damon and Jack went down to the pool. I have some quiet time. Which is rare in the summer time. We get to sleep in tomorrow! Our first dive isn't until 12:00.  Continue praying, we can feel God's hand on us!!!

See you tomorrow!

Tuesday, June 28, 2011

Day 2 Interesting Finds

I need to let all of you know how it went yesterday with her second dive. Damon went with her and this is what he said when he walked in the door. "Lis.....that was brutal!" When I was in the chamber with her yesterday, I told him he was too big for it. By big I mean long. Dude is 6'1" and all muscle:-) Love you babe. So I was worried about him. He was uncomfortable. Couldn't move around and warm! What a baby, huh? I wanted to tell him to suck it up...and do it for Lizzy! Woke up in a sweat early in the morning and had to get out for a 5 mile run.

Well, he did suck it up for the morning dive and he did fine.

And because of my curiosity, I asked a bazillion questions while Damon was in there. I asked how much a chamber costs. Brian (guy in charge) says....a decent house! Wow! I also asked about the chamber that caught fire with a young boy and his grandmother in Florida. Brian said that the man that ran the clinic had died and the chambers were 25 years old (not the worst part) but were not maintained. Brian has two chambers that are checked twice a year by the manufacturer and he has been trained by that company to work on them.  So he is constantly checking them. Feel better, I do!

Here are a couple more of Lizzy from this morning and see if you notice anything.

Lizzy is legally blind. She has cortical visual impairment. Her eyes are healthy and normal. The wires from the eye to the brain is the problem. Could the pure oxygen already improved her vision? Is it possible? She was watching tv! The top picture looks like she and Damon are watching a television show together. I noticed too that her one eye is trying not to roam all over the place. Like there is some eye control happening. Small improvements. Praise the Lord.....we will take them! 

Her nose bled again today but no pain. Brian told us that he has done hundreds and hundreds of dives and not one person has ever had a nose bleed. It was a lot less blood than yesterday so she might not look like we punched her in the face tomorrow. 

I hate telling people my weaknesses. I don't like using my weaknesses as excuses. I know that you are praying for us and here is why. I am horribly claustrophobic and will nearly faint at the sight of blood. For some reason being locked into a chamber for 1.5 hours and watching blood come from Lizzy's nose has not affected me. It is unbelievable. 

Hilton Head, SC is beautiful. Damon has found his way around here as usual. He went to see Cars 2 with Jack and before he went to the theater he made sure there were shops IN THAT PLAZA for Lizzy and I to entertain ourselves. He knows that I get nervous in new places with one way roads, roundabouts, etc. Here is the kicker, ( and I am embarrassed to even say anything) we have a gps system! 

Thanks for reading, praying, supporting, and loving us! God Bless!

I know what this looks like. I didn't let her watch tv. This chamber's tv is positioned differently and she would need to sit in the middle to watch it...and I can't have that. I need some space too!

Yes, I changed the font. Can you read it now? Cause I could barely read it before:-)

If you would like to receive an email when I update here, just put your email address in the upper right box at the top!

Monday, June 27, 2011

Day 1 Dive 1

I woke up early after getting three hours of sleep. Lizzy and Jack slept great. Damon was on the pull out and slept great too. Huh? Jack has horrible swimmers ear, Lizzy is in a new place and Damon hates pull out beds with the bar in the middle of his back. It should have been a disaster but it wasn't and I thank God for that!

We got the the clinic at 9 and received instruction, had toys taken away that weren't allowed in the chamber, laughed a little, and then it was time to "dive."

I laid on the bed and Lizzy was on top of me giggling already. The bed was rolled into the chamber and they started increasing the pressure immediately (diving down). Lizzy was sucking on her pacifier and I yawned and swallowed about a hundred times. After the chamber reached the peak pressure, we just chilled for an hour. Lizzy had music playing and squealed the whole time. She sat up but her head was hitting the top of the chamber. I was laying down the entire time. I will bring a magazine in with me next time. No electronics. Great! I am a tech junkie.  The chamber was warm. It read 79.2 the entire time. They said that if I was too warm that they have big ice packs to go in the chamber. After 60 minutes, we started "coming up." It is the same as when we started with the pressure. Lizzy was sucking her pacifier again and started to get really mello. I moved her head to talk to her and realized she had a bloody nose. Guess who has a really weak stomach? For some reason, I was able to handle it. They pulled us out and cleaned her up. Damon just took her back for her second dive of the day. I am hanging back at the hotel with Jack.

The doctor told us that we would start to see something changing with Lizzy by dive 20. Just walking down the street we receive oxygen at about 15%.  In this chamber, you get it at 100% with the pressure!

We have friends that are here too. We will have dinners out together and get to know each other more. Support group!!!! 

We have received so many emails, phone calls, texts, facebook messages, etc. We can't believe the amount of support and love that we feel. Thank you so much!

Saturday, June 25, 2011

A Checklist

What Lizzy can do.....

  • Lizzy can get from here to there on her knees lickety split!
  • Lizzy can soothe herself with a favorite toy or her pacifier.
  • Lizzy can help me dress her by raising her arms to put a shirt on.
  • Lizzy can be the loudest in the group!
  • Lizzy can hug you so tight that it makes you cry.
Yeah, I wish that list had feeding herself all the time, see her momma and dad, say "I love you," but it doesn't and that is ok.  I was thinking the other night about this therapy and thinking, how great would it be if it were a magical chamber. She gets in and comes out COMPLETELY different.  If Lizzy comes away from this therapy with only having better vision, I will be elated! We have super high expectations, but are realistic. 

Our first "dive" is Monday morning at 9:00. Excited. Nervous. have this opportunity for Lizzy. We all want progress and improvement in our own lives, right. I believe Lizzy wants to progress too. 

Pray for our travel.  It takes 4 hours to get to Hilton Head.  We are taking Jack with us. Emily has commitments here and will stay with Nana and Papa. Pray for patience too please. We want progress now but know it will take time. 


I have always prayed for your health and safety. I felt that if I prayed for your complete healing that you wouldn't be "Lizzy" to us anymore. I am praying that the Lord heals your body in every way. From the growth of your little head down to strength in your feet to walk. Feeling blessed because I AM blessed! 
I love you babygirl,


Tuesday, June 21, 2011

All Set

We are leaving Sunday night and this house is rockin' with excitement! I kid you not, it's all we are talking about. We have two friends that have their children there now and get updates on them.....UNBELIEVABLE!!!

Damon and I will be taking Lizzy and Jack with us for the first week. Emily is staying back with nana and papa. She has pre-team gymnastics twice a week and it's not free:-)

The Hampton Inn of Hilton Head was willing to work with us while we are there. We needed a suite with a kitchenette. Lizzy has to have her own room because she is a light sleeper. Plus, I'm not going to bed at 8:00pm when she does OR getting up at 6:00am. NO THANKS!

We have our hotel set and the prescription in hand! We are ready! Ready for what? ANYTHING! Please pray for us. I will post while I am there.

Thursday, June 2, 2011

Join Us

I can't believe that we get to do this. I am so excited that you get to come along with us with your words of support and prayer. We feel blessed to have this opportunity to give to our Lizzygirl. If you didn't get to read the article that I recently wrote about HBOT, please consider reading it. I have made it accessible on the right sidebar.

I will be posting videos of Lizzy. It will be so neat seeing her improvements with each "dive" she does. The center is 4 hours south of us. We will be staying Monday through Friday and coming home on the weekends. She will be getting in 2 dives a day for 20 days. We start June 27 and will finish up July 22.

Our pray is for improvement and progression. We have seen very little of either in 4 years. Lizzy has so many "issues" that she struggles with. Actually, I really don't think that she is the one struggling. I think that it is us who struggle with the fact that she has not talked, has seizures, is blind, still in diapers, has mobility issues, etc. If this treatment only improves her vision, I will be ecstatic!

Join us! Lizzy would be overwhelmed if she understood the amount of friends and family that love her and want the best for her. Thank you for being there and here for us. Follow us. Just click the "follow" button.


Related Posts Plugin for WordPress, Blogger...