Tuesday, February 23, 2010

Fundraiser, New toy, Jonah's Auction, Britt's wedding and BED...

Hola!  How is everyone??  Sorry I must be watching too many Spanish cartoons lately...  We are still doing  well here.  I've gotten a humidifier for just about every room in the house and try to keep them running all day (but that's pretty pricey using distilled water!!).  But is seems that it might be helping a little.  His secretions are just SO thick and I am still having trouble with the size of the suction catheters.  The 6F is too small and doesn't really cut it and the 8F is too big.  Why there is not a 7F I will never know.. ha
Tonight was Tripp's fundraiser put on by the PhiMu sorority of Nicholls State University.   Anyone who went to eat at the Chili's in Houma, Laplace or Thibodaux and presented Tripp's flyer donated 10% of their total bill to his fund.  Isn't that just amazing?  I think there was a pretty good turn-out.  Thank you so much to everyone who went to eat for Tripp tonight.  You're meal will help pay for his doctor visits and supplies.  Thank you to everyone who was associated with putting together this fundraiser and to everyone who helped spread the word.  There were people that I do not even know who were e-mailing me for flyers and posting the event on facebook and even people sending checks for the fund!  Your support is very MUCH appreciated.  I just hope one day Tripp can see how many people love him and are praying for him!  It's so touching.

So today we woke up and were going on with our regular routine and the UPS man knocks on the door. Well, it wouldn't be a normal day over here if the UPS man didn't stop at our house (I think he gets aggravated at all the boxes that come here and may or may not have hinted that before).  We are always getting him some type of supplies for him... wound care supplies, suction catheters, g-tube feeding bags, etc... So I was totally expecting suction catheters because it was about that time... well I opened the box and it was a really cool TOY!!  YAY!  It's not everyday that a toy comes in the mail!  And what's better than expecting suction catheters and getting a toy instead.  It was from Diane Rabalais ( the nurse from North Oaks who helped deliver Tripp).  She had a really nice card that said she read the blog and heard us singing "Head, shoulders, knees and toes" and her daughter had a really neat toy that sang it.  SO she bought it for Tripp.  Once again, people just amaze me.  Tripp LOVES it.  It's the perfect height for him to sit on the ground and just bang the heck out of it.  He sat on the floor with that toy today longer than he's EVER sat.  BLESS YOU DIANE!  He was actually preoccupied for a few minutes!!  I had to lysol the toy after he finished because it had blood all over it from his little fingers from banging on it so hard! haha.  Here he is with it... Thanks Diane :)

Tripp's skin is looking about the same...  his face is looking better.  Thank God.  He is still rubbing his eyes a whole lot and still has blisters and some raw skin hanging from the corner of both eyes.  And he has those scabs on his face that just don't want to heal.  I don't know if it's the depth of the wound that makes some heal so fast and some NEVER heal.  I have no clue.  Or maybe it's just that some will never heal.  The ones on his legs have looked exactly the same for months.  They're pretty deep though... and he kicks his little legs like there's no tomorrow.  But I pad his legs with about 4-5 layers of stuff to keep new ones from popping up.  And it works, there hasn't been a lot of new ones... one here and there.  But ugh... his fingers.  I'm just at a loss.  I am absolutely NOT wrapping each individual finger... not because it's hard on me, but because he LIVES to hold and play and use his fingers... that's pretty much all he can do.  And I've wrapped the little sore that's been on his foot for months and it just won't heal either, so I'm thinking the fingers will maybe just come with time... A LOT of time.

Jonah's Auction is up and running!!  All the proceeds from the auction are being donated directly to Debra to help find a cure for EB!  Please, please go check it out.  They have some really great stuff and it's for a great cause!! And it's to celebrate Baby Big Boy Jonah's 1ST BIRTHDAY!!  HOW.  Freaking.  EXCITING?  Really, go check it out... and BID!! It will tell you how to bid on the website!

OH I so totally forgot to tell you that my sister (Tripp's Nanny) is getting MARRIED!! IN MAY!!
Very soon, I know... but her fiance' lives in Minot, North Dakota, so a long engagement isn't really fun.  Anyway, she will be 28 hours away :( I know.  I will try not to focus on her leaving yet and only one the exciting wedding day (May 22!)  I really don't think it's hit me, well I KNOW it hasn't hit me yet that she will be leaving and be so far away.  Ok, so I'm really NOT going to think about it.  Anyway, I have 3 months to shed some pounds... and tone up a bit.  So I need a little motivation.  Just not sure where I will get it.  I've been eating better this past week mainly because there are no groceries in our house because we haven't been grocery shopping in ages except for things we need here and there.  My mom ordered us an elliptical so we are going to start working out as soon as it's in.  I mainly need to work out to get a little energy back and so my body won't feel so stiff all the time.  Ok I'm starting to bore myself.. sorry.

It's WAY past my bedtime and Tripp finally just fell asleep watching Mickey Mouse.  He LOVES his bed.  Thank God.  What 9 month old wouldn't love their bed when they're propped up on a boppy and several pillows with soft blankets surrounding him, watching Mickey Mouse on his portable DVD player and chewing on his favorite toy (a burp rag).  Judge me if you want.  But the child deserves to be rotten.  And trust me, the DVD player only occupies him for a short time...

One more thing... I want to share some scriptures with you that Jen Burns shared with me that I thought are SO fitting.  And there is nothing I love more than reading scriptures that suite our situation (It just makes it a little easier, ya know?) Thanks, Jen.  You may have saw them on caringbridge, but I wanted to post them here, too.

Revelation 2:12
He who has an ear, let him hear what the Spirit says to the churches. 
He who overcomes will not be hurt at all by the second death.

Psalm 37:18
The days of the 
blameless are known to the Lord, and their inheritance will endure forever.

2 Timothy 2:12
If we endure hardship, we will also 
reign with Him.  (how cool is that!)

This is him waking up this morning... a hot mess as always!!
But he's always smiling!!

Friday, February 19, 2010

The many faces of our little HAM...

Tripp has been a complete HAM lately. He is SO rotten (rightfully so) and definitely knows that he has us wrapped around his little raw fingers. His smiles and facial expressions lately have been so so cute, I could just eat him up.
He had his upper GI done this morning and it was not as bad as I expected... because like I said, he is a complete angel. They put some Nestle Quick chocolate in his barium, I sucked it up in his syringe... and he couldn't get enough. He just didn't like the fact that he was laying down on the table and someone was holding him down. I don't know the results yet, so I will let you know when I know... BUT we also went to see the ENT while we were already at the hospital and she took a look down his airway again... and it looked GREAT!!! Praise the LORD. Thank you to everyone who has been saying prayers. They are obviously working! Please continue to pray that his airway can stay blister-free!

I handed out my first "Tripp card" today. It was perfect actually. This really nice lady walked up to us in the hospital and asked us if we were Christian. We said yes and she told us that she had a dream last night about a little boy with markings all over his face. She then asked if she could pray over Tripp. And I said, "Most DEFINITELY." Pretty cool, huh? I thought so. And I thought it was the perfect opportunity to hand her one of his cards. That way she can keep up with us.

I am so happy with the way things have been going the past few days. I just hope things continue to stay good and I hope we can find some kind of Happy Medium with his trach issues. My mom bought us a humidity detector (or whatever it's called) and I bought a few more humidifiers so we could have one in almost every room. So hopefully we can try and help all of his "drying up" issues.
We finally found a company who does Tripp's trach and G-tube supplies!! Thank you so much to everyone who tried to help us find someone. This company is local (Patio Healthcare) and so far has been AMAZING! The guy that came out to the house to bring his new equipment and supplies could not have been any nicer. Maybe losing the other company was a blessing in disguise... The other company was fine, but I feel so much better about the new one.

(OH, Don't forget to check out the blog below to find out about the local Chili's Fundraiser for Tripp!)

So here are a few pictures of today when we were sitting out in the lobby of the hospital waiting for our next appointment. He was CRACKING ME UP! And when I say he's a HAM, I mean it. I know these pictures are all the same, but that's why I called this "The many faces of our little HAM." He was surly putting on a show. When he tilts that head to the side and gives that little grin, it's like he's saying, "Mom, does this face make you want to give me whatever I want?" Yes, little buddy, it sure does!!

Believe it or not, these next pictures are him smiling.
It's his new thing. HILARIOUS.

And last, a little video of us sitting out in the lobby.

Chili's Fundraiser for Tripp by Phi Mu.

Hey guys!  Just wanted to let everyone know about the local upcoming fundraiser for Tripp.  The philanthropy head of the Phi Mu sorority at Nicholls State University e-mailed me a few weeks ago.  Their sorority does a fundraiser for Children's Miracle Network each year, but as Tripp isn't a part of that, they read his story and felt that they wanted to do their fundraiser for him.  (I know, .... so so nice.)  So they are having a "Chili's Night" for Tripp.  It will be held on Tuesday, February 23rd.  Anyone who presents his flyer to a Chili's in either Thibodaux, Houma, or Laplace will donate 10% of their bill to Tripp's fund.  Isn't that just awesome??  I will try and attach what the flyer looks like, but please let me know if you need a flyer to print out!  The girls have passed them out around Nicholls campus and around the Thibodaux, Houma, and Laplace areas.  Thank you from the bottom of our hearts to the Phi Mu sorority and everyone that is involved in this fundraiser for Tripp.  We are honored that you thought of our son.  

Wednesday, February 17, 2010

It must be the power of prayer.

So I want to extend a HUGE thank you for all the prayers for a little bit of sleep and my sanity back. Since Sunday night, Tripp has somehow slept better than he EVER has. I don't know if it was that I was at my wits end and he knew it (doubt it), or that I am not running his feeding pump (maybe his stomach was hurting), or the new trach, who knows... so I'm just gonna toss it up to all those prayers. I am forever grateful. Will it continue? Don't know, but every hour of sleep I get is a blessing. We are of course still having a little trouble with the trach, but I don't know if those issues are fixable at this point. We just take one day at a time. Some days are better than others... and I thank God for all the days, good or bad. But it's totally amazing what a little sleep can do. The first day after I slept I felt like a truck hit me, guess my body wasn't used to getting that much sleep. But I'm starting to feel a bit more rested and I pray it continues to get better (my eye bags are still there, but I think it will take a few weeks of sleep to get them looking a little lighter.. ha).

Tripp amazes me more and more every day. I just don't know how he does it. He is still not doing everything an average 9 month old would be doing, but he is totally not as behind as I thought he would be. It's very surprising, actually. He is using his hands and arms great and pretty much up to par. He grabs at EVERYTHING and it goes straight to the mouth. From what I can see and count, he has about 16-17 teeth... unless there's any I can't see. Crazy, huh? And I'm pretty sure there's some more coming in because he's drooling like a maniac. His poor little fingers are still raw and bleed A LOT. He will cry for a few seconds when he hits one on a toy and it's starts bleeding, then he's fine. I know, like I said.... he's amazing. The strongest little boy I know. As far as his legs and feet, he's FINALLY starting to put a little pressure on his legs. Yesterday in his walker, he started pushing backwards a little!!! YAY! I was so psyched... And, O MY GOODNESS.... his smile- is so darn precious I can't even control myself. He's so tired of me kissing all over him. And he'll let you know, too. When he's had enough kisses and "in my face" time, if you get too close he will fuss. And by fuss I mean you can just tell in his face he would be fussing... we can't hear anything but the trach noise. Which is really sad. BUT just the past few days, he has started moving his mouth like he would be babbling. And this morning, I could not stop laughing because every time I would start to sing, he would move his mouth like he was trying to sing with me. SO SO cute. And lately, when he gets really excited, he opens his mouth really wide and squeezes onto whatever is in front of him and you can see all his little teeth.
Here are some pics from the past few weeks...

Tripp and MeMe

First time big boy could sit up at the doctor!!

I told him one more scoot and he was gonna be off that chair!

I made Tripp his own "business cards" (ha) so that every time we go to the hospital or the doctor's office and people ask about him, I can just hand them a card and they can learn more about Tripp and EB from my blog and caringbridge.  I also put debra.org on there.  Because I know we tell people all about him, but when they go home, they're probably just thinking, "Oh, remember that poor boy with the bad skin disease?"  This way they can learn more about EB and maybe even help us spread awareness.  The more people that know, the better, right?



Here are some videos of the past few days.... PLEASE excuse my singing. I am not a professional. But Tripp likes it and that's all that matters.. ha.

Tripp singing with Mommy...

Here is Tripp so so happy in his walker!
Don't mind my mother, she had a frog in her throat.

This is him smacking his lips... something he finally just started doing.
If you listen close, you can hear it over Mickey Mouse.
(It may be boring to you, but I was about to cry because he never moves his lips.)

Sunday, February 14, 2010

Happy 9 Months Precious baby boy.

Happy Happy Happy 9 Months to my precious baby man.  I can't believe you're still fighting hard after 9 whole months.  YOU ARE MY HERO.  I love you with every ounce in me.  You are my world.  You are what keeps me going.  No one knows what pain really is my baby... may we never take one single second, one single minute, or one single day for granted.  You are God's child and you are living this life of pain and sacrifice so that all of us can be thankful for what we have been given.  You will change so many people lives in your one lifetime.  YOU make me smile.  I LOVE YOU. 
Love, Mom


This time, I think I'll start with the positives first, because I am soooooooo far gone it's not even funny.  I'm exhausted, drained, ticked off, and pretty much just mad at the world.  Anyway, positives... I forgot, sorry.  Randy and I got to go out to eat last night!!!!!  Finally!! Long, long, long overdue.  It was so so so so so nice.  I can't even tell you.  My mom, dad and sister all watched Tripp while we went.  I could not thank them enough for a couple hours of freedom to try and get some sanity back.

Ok, that's it with the positives.  I don't know if Tripp has a cold, or just doesn't feel well lately.... But I am pretty much about to lose it if things don't get a little better soon.  The past few nights have been SO absolutely horrible that I got to a point where I wouldn't have cared WHO was in my house helping me... I just wanted a solid 30 minutes of sleep.  He is at the point right now where he cannot tolerate the big humidifier on either.  I've tried every single setting and he just fusses and fusses when it's on.  But if I take it off while he's sleeping, he dries up.  SO SO SO frustrating.  I guess he does good during the day because he can cough the stuff up, but when he sleeps, it all sits and dries up.  But the humidifier I guess makes everything too lose and we are up allllllll night long.  I don't know.  I'm so over it though.  And it would be different if I could sleep during the day, but I have to wake up and drink my coffee just to make it through the morning and then I'm running around trying to get anything done if he takes any kind of nap.  I just can't sleep during the day.  I tried yesterday, but my mind was just racing.

So I've tried to blog like the last 3 days and every time I start one, I get distracted and then I'm never able to get back to it.  We went to the GI doctor on the 11th... whatever day that is (I'm too exhausted to try and think.)  She scheduled an Upper GI for Friday.  Just to see if his esophagus is narrowing with strictures or whatever.  We may or may not just walk out depending on what they tell me he has to do.  I am NOT forcing a nasty barium down his throat with all those sores.  Just not doing it.  Sorry.  So if he happens to be a good boy and does well, then fine.  If not, it's SO not worth it to me.  Anyway, she also asked how long I planned on keeping him on the steroids.... my perspective is:  if the steroids help his sores (mouth, body, whatever)  I will keep him on them.  If they make him happy and comfortable... as LONG as possible.  Because I'm not even thinking about when he's 16 years old what the steroids could do to his body.  I'm thinking NOW, today. tomorrow.  And no further.

To top everything off, today was bath day and I decided that I wanted to do his trach first and get it out of the way because he wasn't breathing well to begin with and he's always too tired at the end of bath.  SO he's NAKED on the table and decides that he can't breathe.  I salined, and salined, and salined.  I could hear it in there, but it just wasn't coming out.  He was coughing and coughing, and breathing so so hard.  I did the ambu bag to try and push it down, then I brought the big blue tube humidifier in the changing room to try and break things up.  He was exhausted, upset, and that made everything so much worse.  And with him being NAKED, we couldn't even pick him up and console him because the last time I picked him up naked to weigh him in just a towel, his skin peeled off.  SO there weren't many options, but he finally calmed down.  I think it was my punishment because earlier today I was so tired of seeing him miserable that I prayed to God to take his pain away.  I told him I didn't care how he did it, just take all of his pain and misery away.  And then he scared the you know what out of me.  I told God I was sorry and I would never ask him that again.... God's Will be done.

So anyway, I'm moody... tired... aggravated... stressed... and my whole body hurts.  And I won't ever ATTEMPT to tell you about Tripp's supply company and our issues with that.  I'll save that for another day.  My house is clean thanks to my mother for rocking little man after his bath so I could straighten up.  It's amazing how what a clean house can do for me.  Oh, and Happy Valentine's Day :)

Tuesday, February 9, 2010

Please help spread the word...

Jonah's EB Auction
Hey guys... Please help spread the word about Jonah's EB Auction.  It is an online auction to help raise money for Debra.org to help find a cure for EB!!!  The link to his EB auction is:
And there is also a button on my sidebar that you can click and it will bring you straight to the site.
There are going to be a ton of items to bid on and all of the proceeds will go to Debra.
The auction will run for 5 days before Jonah's first birthday (February 27th).
Please, Please spread the word to help raise money to find a cure for EB... Do it for all our EB children: Tripp, JonahLeahSam, Casey, Evey, Elly  and all other EB kids.
Thank you so much!!


Tripp is doing well.... considering everything he has going on.  He is such a wonderful, wonderful child.  I know I say that all the time... but my goodness, I don't know HOW he smiles so much.  Don't get me wrong, he sure has his moments of pure pain and misery.... but in general, he's an angel.
I called a home health company today... PSA Healthcare.  A nurse that fell in love with Tripp while he was in the hospital, Kristi O'Brian, wants to start working for this company so that on her days off, she can come help me with Tripp.  Even if it's to let me nap, or come to the doctor with us, or help me set up bath.... anything will help me.  Plus, she's become more of a friend so I would trust her completely.  That's the most important thing.  So I'll let you know how that goes... it might take a little while to get put in place.
Nights have still been pretty rough.  And it's just impossible for me to nap these days.  MeMe and PawPaw Carey are in town and my mom comes during the day... so I could sleep, but I've just been visiting and cleaning up instead.  We have an appointment with the GI doctor on the 11th.  Hopefully she will be able to give us some good nutrition tips.  I'm just not sure if I need to be giving him a higher calorie formula since he's not eating solids.  He's not losing weight, but I wonder if he would heal better with a higher calorie formula.  We will see...
Bath time has been okay... not great but tolerable.  I guess if you would ask him it'd be different.  He of course still hates the water on his legs, even the salt water (saline mix, supposed to take the sting out).  He's been getting "extra wrapped" lately just to try and add a little more padding because we are having to handle him and he's moving so much more.  He has a TON of teeth that are making new sores everyday. But overall, things are going well.  He is just SO SO SO much fun and learning new things each day.  He is ROTTEN to the core, but it is WELL deserved.  He loves when you sing to him and will stop in his tracks when you start singing.  When you say, "Shake it, Shake it" he starts shaking his arms and wiggling his feet.  It sure is adorable.  We are trying to bring in a little bit of sign language so he can start to learn how to communicate with us, because I don't know when he will be getting his trach out... but I don't think it will be any time soon.

Anyway, here are some more recent pics...

We got Jonah's 1st Birthday party invitation in the mail!! 
He loved it... it was like he knew "That's my buddy."

Love you, Dad.

Happy Birthday, Papa!  The big 49!
Now cut that cake!

Tuesday, February 2, 2010

This, That and Doctor Appts.

Tripp is sleeping.... in his bed... with his humidifier on... and it's not bedtime.... Hooray!  AND my Mom let me get a little power nap in before she left today.  Double Hooray!  Today we went to see another eye doctor.  The appointment was for 1:00, so Grammy came early and we bathed him at about 10.  It only took an hour!!  We are getting faster and faster.  I don't think we've ever done a morning bath, but I kinda liked it.  We tried it because I knew that I would be worn out when we got back from the doctor and I would be way too tired for bath... me and Tripp.  So I got some of the stuff together last night and it worked out pretty well.  And did I ever mention I HATE doctor days that only consist of ONE appointment.  It feels like such a waste.  I tried to move his GI appointment up to tomorrow (it's for the 11th,) but all they had was an 8:30.... haha.  This time the doctor said that it looks like his rubbing just made a sore in his eye... sound familiar?  I should just be a doctor... ha.  SO he gave him some steroid/antibiotic drops... after I had to pull his arm.  He said it did not look like it was fusing to his eyeball, so that was good... but like everything else, he said it was just something that we were going to have to deal with and he didn't know if it would go away... I know, so surprising.

On a bright note, NO ONE called Tripp a girl today.  I'm not sure if I told you, but one time when we went out, two separate women called him a girl... and he had on a blue diaper and a orange shirt...with a blue blanket.  Guess it's the eyelashes.  However, we did have a few really nice old ladys that were very interested in "what was wrong with him."  I really like when people ask questions, because the way I look at it, the more people ask and know, the more awareness it raises about EB.  Plus, it's just nice to be able to talk about it sometimes, ya know?  On our way out of the hospital my mom asked me, "Do you think we should go see the ENT again while we're here?"  And right when she said that we passed Dr. Rodriguez at the coffee shop (that's the second time that's happened.)  It was funny.  So I got to talk to her a little while and tell her some things I needed to tell her.  I'm still waiting for the rest of my custom trachs to come in so I can change his out.  This one that's in now has been in about a week and a half... and I usually change them out once a week.  OH YEAH... I forgot to tell you that the company Tripp gets all his trach and G-tube supplies from decides to tell me (when I called them to check on his trachs) that they are dropping Blue Cross insurance... (we have Blue Cross insurance.)  They said that I had to find a new company by February 14th because that's when they were coming to pick up all his rental machines (suction, humidifier, feeding pump.)  I wanted to say, "Well if I haven't found a new company by then, you better bring the cops with you because you aren't taking his stuff."But I decided I'd hold off on that.  I found out another company around here carries the same supplies (because most around here don't do pediatrics... there's only a select few.)  So they are just faxing everything over to the other company... I just hope it's all that easy.

I called Patrice yesterday.  I was so so so nice to be able to talk to her.  I feel like we know each other but we've never met.  I know we will meet one day and I can't wait... and I know Tripp and Jonah will hit it off.  They'll have TONS to talk about :)  I wish we could go to Jonah's birthday party SO bad.  I've looked into it.. and driving it would take us about 13 hours.... that can't happen.  And flying is WAY too difficult with him right now, not to mention dangerous.  So if anyone has a private plane and wants to fly us to North Carolina, we would really appreciate it.  :)  I'm just saying... If not, we will be surly there in spirit... and ONE DAY.. WE WILL MEET!! That's a promise! :)

I'm trying to be better about my posting, can you tell?  And guess what?  Randy's mom (MeMe) is coming in town for about a week and a half.  And she will be staying with us at the house until Saturday,  so maybe I'll leave the Grandmas with Tripp and get some stuff done around the house... like applying for SSI... something that I've been meaning to do since he was born.  And, maybe I'll get to post some more and let you know how we are doing a little more often.

I had been trying to hold out on giving Tripp the Ibuprofen every 6 hours around the clock because I'm worried it might be messing with his insides... but it's not really working.  It obviously just cuts the pain a little bit more.  He's still on the steroids, so I wanted to see if just the steroids did the trick... but no, they don't.  I hate giving him so much medicine, but what are my other options?  To see him in pain... I don't like that option and I'm sure he doesn't either.  Anyway, right now things are tolerable.  He was SUCH a good boy today.  Our friend, Bonnie let us use one of her children's car seats... it's the bigger kind but still can be rear facing, too.  Because he grew out of his infant seat... I couldn't even buckle it.  He loved his new seat.  It's like he had freedom to move his arms.  I swear I don't know how he's so good.  But I am so so so so so thankful for that.  Thank you God.

Monday, February 1, 2010

Post and Pics

Hi there.  Just waking up and I figured I would try and write before little one wakes up.  He gets his best sleep between 8-9 in the morning.  I have no clue why.  I'm still suctioning all night.  I've come to the conclusion that I need to put him on the humidifier at about 5 in the evening and give things an opportunity to break up a little earlier.  That way maybe he can get all the secretions up a little bit BEFORE bedtime.  I've thought of this before but it's a little easier said than done.  But if it will help us sleep, it's worth a try.  I'm thinking now that I might look in to getting someone in the house to help with getting bath supplies ready and getting his bed ready at night, or just helping out around the house.  I'm going to try and make some calls today to see if that's anything insurance will cover.  I know a nurse is not going to want to come in and just "help around the house."  I don't want someone who would come in and suction, or do the actual bath... just help get things set up.  If you read the blog comments that people leave, another EB mom was nice enough to let me know that she had someone in her house just for those things... she still BATHED and did all the dressings... but she just had someone who would help her get things set up.  And don't get me wrong... I have my mother here everyday and I can finally get stuff done when she is here.  But if I could get some OTHER things done, instead of bath and bed... that would be great too.  It just a thought... no promises :)  But the nights ARE a little tough.  We will have a good night, which is getting up about every two hours until about 5-6, then about every 30 minutes after that.  Or we will have a really bad night which is getting up about every 30 minutes... and sometimes maybe getting an hour here or there.  Don't worry, when I get to where I just can't go anymore... I'll get some help.

Everything with the house is going great.  There are a few things here and there that we have to do, like touch up some paint, put in baseboards around the shower.  But everything is finally functional, and it sure feels great.  I still don't have everything ready for his playroom, but yesterday we put him on the rug and put all of his toys around him and he was in heaven.  I really think he is going to like it.  And I certainly like having the extra space instead of shoving his toys either in the living room or between all his dressing supplies.  You should see that supplies that come in for ONE month for this child.  There are 2 HUGE boxes of stuff that come once a month... then that's not including all of his other supplies, like the humidifier stuff, the suction stuff, the feeding tube stuff... there are boxes everywhere.  I definitely have a lot more storage than I used to, but those boxes still drive me crazy.

Yesterday Grammy (my mom) made the big 50!!! Can you believe it?  She looks better than me.  I know, it's sick.  We had a small little get together here for her.  It wasn't what I wanted... I wanted to throw a big surprise party, but it was just impossible right now.  So maybe for 55 or 60... (you won't know which one, so it'll still be a surprise, Mom.)  But she said it was just what she wanted.  I made a really hideous cookie cake, and we BBQd and ate a lot.  It was nice.  Happy Big 50 Grams!!  You look darn good.

Randy is coaching a basketball team this year... 9-10 year olds.  He loves it.  He gets so attached to those kids.  You should hear him talk about them.  Anyway, they had the end of the year play-offs this weekend.  Saturday, he brought the whole team over... (Don't worry, they all washed their hands and stayed their distance from Tripp... except for the picture.)  He wanted the team to meet Tripp so they could have some motivation for their games... They all said they were going to win for Tripp... and they won three games that day!!  It was sweet.

Thank you so much for the prayers... and can you pray for little Jonah too.  His little man parts are blistering and it really burns him when he urinates.  I know it has to be so hard for Patrice and Matt to see him in pain every time he urinates.  For all Tripp has going on, most of the time he is smiling and happy, which is amazing, I know.  But when he is in pain, like he hits his little finger and it starts bleeding everywhere, or when I can tell his poo-poo burns his sores on his butt... it is so hard to see him in such pain.  So please pray for Tripp and Jonah... and all the EB babies that have to suffer from the normal things that happen in life, like going to the bathroom, or just playing with their toys and hitting a bo-bo.  Jonah only has one month left until he turns a year old!!  You beat those odds, buddy!!  We are right behind you!!

We have another appointment with the eye specialist tomorrow.  He now has what looks like the same thing starting in the other eye.  So I'm thinking that surely he is making blisters by rubbing.  I'm going to ask for maybe some steroid drops to stop the itching and the pain.  Hopefully that have something like that for his age.  So I will let you know how it goes.  Thanks again for all the support!!

This is his orange... well "bright" orange mitt chair we bought for his playroom. 
He loves it. 

Here's the team!!
 Tripp was infatuated with so many boys at one time. 

Grammy's cake...

Here's what we've been working on... well, twice. 
He doesn't love it... but he's getting stronger.  
He can only stay this way for about a minute until he gets upset.

And we've been trying to get him to put some weight on those feet! 
This only lasts about a minute as well... BUT, it's progress.

My Man...