jogging for jonah and sweet tripp

Jogging for Jonah went SO incredibly well on Saturday. Seriously. We could not have asked for better weather, a better turnout, or a sweeter crowd. I don't have photos yet, because Jenn went out of town on Sunday (how dare her), right after being our event photographer on Saturday. But as soon as she is back in town I will harass her for photos. :)

This is a cute one that I stole from my friend Laura's Facebook page.

Aunt Shaina was one of our face painters, and since Jonah couldn't get his face painted, Granny asked her to paint his "sleeve." Turned out so cute!

I'm not sure how many we had (somewhere close to 300, I would guess) or how much we made ($10,000 +, I would guess), but I hope to have more concrete numbers in the next couple of weeks. People are still donating and I'm not sure how many folks had fundraising pages where they raised even more. So exciting!

We had the 5K run/walk, the one mile fun run, lots of water, food, and 40 dozen Krispy Kreme doughnuts, a MEGA raffle, magnets for sale, face painting, two inflatables, a cute fire truck ride, a real fire truck, and the NICU transport truck (special to me that they were there... they're my super heros!). We also had prints of a painting for sale. The painting is called "Jonah's Cure" and was done by a local artist here in town. It is AMAZING, and I can't wait to show you guys and give you the info on how to order one. They are 11X14's and they are only $30 (includes shipping). I'll have a post coming up on that shortly. You will love them, I promise!

I also wanted to let you know that if you ordered a t-shirt, I will be shipping those this week. Most all of them are packaged and labeled, it's just a matter of taking them to the post office in stages (there are bunches). I also think we'll have some mediums and larges left over, so if you didn't order a shirt, but would like one, look for a post on that coming up too.

In all our joy about this weekend's event though, I just can't help thinking of Courtney and her sadness today on Tripp's third birthday. Will y'all please keep her in your prayers? I just can't imagine how she aches. This post she wrote broke my heart all over again. I know I'm not the only one who wishes I could take some of her pain on myself, so she didn't have to bear it all. Some days it is just too much. Today is one of those days. I love you, Courtney.

struggling

Struggling to know what to blog. Still so sad for Courtney and her aching heart. Just don't know what I could write here that's any more important than that. Everything else just seems so silly. Not ready for life to move on quite yet...

saying goodbye to tripp

Well, I'm back home after one of the most difficult yet beautiful trips I've ever taken. Matt took me to the airport at 5:30 yesterday morning. I asked Matt to pray for me before I left. So he did.

And then I burst into tears.

I only had to wait a little while at my first gate, and so I caught up on Google Reader. I read this post by my friend Jen.

And then I burst into tears.

My flights were both on time and getting my rental car was fast and easy. I hadn't checked any luggage because I knew I wouldn't have time to wait on it, so I was out of the airport pretty quickly. I got my car and hit the highway. And immediately got stuck in stand still traffic. Instead of panicking, I called my sister and let her distract me. Thankfully it was just a right lane closure, so the slow down only lasted a couple miles and I was on my way. It was a 45 minute drive to Ponchatoula, and as soon as I got to town, I started seeing red balloons and ribbons on all the store fronts.

And then I burst into tears.

I got to the church at about 11:45 Louisiana time, reapplied my makeup, and went in. Lots of people knew me, even if I didn't know them, so I never felt awkward or alone. Except when some of them said it was like they were meeting a celebrity and that I was an inspiration. Then I felt awkward. And extremely humbled and undeserving. (Am I really still dooping you guys after all this time?) Courtney's Aunt Linda was one of the first people I met, and she immediately busted me through the (very long) line to meet Courtney.

And I finally got to hug my Best Friend I Had Never Met.

And then I burst into tears.

Y'all. Courtney is amazing. She is everything you would imagine her to be and a million times more. She  is the most loving, sacrificial, caring, and courageous person I've ever met. She is exactly who I've known she was all along. And I hugged her a hundred times and told her how many people had asked me to love on her on their behalf.

She got up and spoke at the funeral and it was one of the most amazing, raw, vulnerable, honest, loving things I've ever had the privilege to hear. She was amazing.

And then I burst into tears.

The church was packed, and the mass lasted about an hour. We then drove to the cemetery. Along the way, there were folks dotted along the streets, wearing red and holding signs for Tripp.

And then I burst into tears.

They laid Tripp to rest in the local cemetery.

We prayed together and then headed over to the Knights of Columbus building for a reception (sounds like the wrong word). Anyway, I got to sit beside Courtney and really got to talk to her, Stephen, her sister, Tim, and some others in Courtney's family. The Delgados got to come too, so I got to meet Vanessa's husband and daughter for the first time, and I got to spend some short but sweet time with Vanessa. I've really really missed her.

She and her husband have their court date on February 2nd to adopt a little boy with EB. We hope he'll be home by late February or early March. I also finally got to meet Sam Sheridan, another EB friend, and her mom Marybeth. The whole trip was just so bittersweet. I'm so thankful to have gotten to spend time with so many wonderful people, but of course it was a sad reason to be together.

After the reception, I went and checked into my hotel and changed clothes and then went and spent the rest of the evening with Courtney and her family. I will treasure those hours forever. They meant more to me than I could possibly say. Courtney has such an amazing network of family and friends loving and supporting her, and I was so thankful to get to meet them all in person. I finally tore myself away around 9:30, went to the hotel, spent about 30 minutes with the front desk lady trying to figure out my door lock malfunction (don't ask), and finally got into bed. I woke up at 4:00 this morning, left my hotel at 5:00, and made my 7:00 flight no problem.

As a surprise to me, Jonah came with Daddy to get me at the airport (I thought he was going to stay at the house with Granny). I can't really describe how it felt to have him waiting there for me, yelling "Mommy!" to me as I came down the escalator. He hugged me so tight and said, "MOMMY! You're home!" I'm so thankful for his little life, but I don't understand why some kids live and some kids die. Some kids do alright, and some kids suffer so much. I don't know that it's guilt I feel, but it's just hard, if that makes any sense. I just ACHE for Courtney.

I was SO tired. Between the grieving, not sleeping well for a couple nights before I left, getting up at 4 something both mornings, crying all day yesterday, and traveling on four planes in 24 hours, I was worn out. I came home, fed Jonah lunch, let him play with his "surprise" I bought for him at the airport, and then we both took a two hour nap.

I am so so so very thankful to have gotten to go and thankful to Matt (who had to take off work) and his mom for taking such good care of Jonah. I love my people. Please keep praying for Courtney and Anita (her mom) and all of the friends and family who loved Tripp so very much. This is a long, hard road.

And thank you all for the prayers you said for me. I felt every. single. one.

going to Louisiana

I will be flying into New Orleans in the morning to be there for Tripp's service. I tried to find a flight for tonight and was going to come home tomorrow after the service, but there were no affordable flights available to get me home tomorrow night. So instead, I'm flying out in the morning and will come back Thursday morning.

I have a small prayer request if you don't mind. My flight lands at 10:23, I have to take time to get my rental car, and the service starts at 1:00. The church is 45 minutes away from the airport with no traffic. Will y'all please pray for smooth flights, no delays, and no traffic jams? I would be heartbroken to miss the celebration of Tripp's life, and if anything goes wrong (as things are wont to do in the airline industry), I will be pushing it. I do have an hour layover in Charlotte so there is a tiny window there if my first flight is running late. I've never flown on my own (Matt is the pro in our family), never rented a car, and never been to New Orleans, so this should be interesting. I'm so happy I get to go.

On the one hand, I want to be there RIGHT NOW, am desperate to give Courtney a hug, and the next 24 hours can't go fast enough. On the other I'm anxious about leaving my family, being so far from Jonah, and sad about the circumstances under which we're finally getting to meet.

Everything in me aches for Courtney. Losing Gabe was hard. Losing Jonah after almost three years of knowing and loving him, of him being my LIFE, would be INFINITELY more difficult. I just cannot imagine. Will you please continue holding her up in prayer? I know she is glad that Tripp is not suffering and knows his life made a difference. But at this moment, I can imagine that those thoughts are not that much comfort after having just lost your life and breath.

I love you, Courtney. Continuously holding you in my heart, thoughts, and prayers.

Sweet Tripp

Tripp went home to be with Jesus earlier today. Please continue to be in prayer for Courtney and the rest of his family.

tripp

In case you haven't read Courtney's latest post, Tripp has taken a turn for the worse and they think it won't be long now until he goes home to meet Jesus.

Will you please pray? For peace for Tripp, his parents, grandparents, and all who love him? And for comfort for sweet Tripp that he will be in as little pain as possible during these last days?

Courtney and I have had some sort of God-given connection from the beginning, and I feel like a piece of my heart is always with them, although we've never actually met. She texted me the other day and said she dreamed that we finally got to meet for the first time, and we hugged for 15 straight minutes. I'm pretty sure that's how it's going to go when we do finally meet face to face. I don't know why I included that part, except to say that I just love them so much, and my heart aches so much for the pain and suffering they are experiencing.

Tripp, you've changed my life for the better. You have taught us all so much about faith, courage, strength, and having a fighting spirit. I love you, Sweet Boy.

Latest from Courtney

You guys are amazing!! I can't even keep up with all of the support! I will never be able to explain how much this means to me and my family. I am amazed at the way God is using my little boy to touch lives. What a blessing he is. 


I am SO sorry to say that Facebook only allows you to have 5000 friends (I would never have DREAMED that this would happen)- but I we have reached the limit and it will not let me add any more people:( So I have now made my page public so that everyone who wants to can keep up with Tripp. I am so very humbled at the amount of requests, messages, and posts that I have received. I hope you all know how touching it has been to know that so many people love my little boy. I am so grateful. 


Tripp is about the same. We have made a tiny bit of progress with his pain medicine. He is starting to seem a little more comfortable during the day. Baths and diaper changes are still extremely painful. He is on a very large amount of pain and anxiety medicine. He is rocking constantly and getting more love than you could ever imagine. I am SOOO thankful that he can be home in his environment where he is comfortable. Thank you all again and again for the continued support you have shown us. We are blesses beyond words. Please continue to pray that GOD's WILL be done. Whether that is Tripp being fully healed here on Earth, or fully healed in Heaven.

Courtney's Facebook Page HERE.

this and that... again. Again.

I really want to say something clever about these photos, but I got nothin'. Not sure what my problem is. Maybe it has something to do with minimal adult socialization and the 1,000 degree temperature outside. Not sure. But anyway, here are some photos. Jonah is cute. That is all.

I wasn't torturing him. He wanted my camera. The camera is a definite off limits. And not many things are, so I don't feel bad about it. Even when he gives me the old "life is so unfair" fake cry. I'm an oak.

______________________________

I haven't heard from Courtney today. I texted her but haven't heard back. I know she's completely overwhelmed, but if I get any update I'll let you know. I'm assuming things are the same meaning that Tripp is in excruciating pain unless on mega doses of pain meds. A huge prayer movement has started (continued?) for him. You can join Facebook prayer groups HERE or HERE and check out the Prayer Vigil Facebook/Real Life event for him HERE.

In less sad news, John (Ivan) and Carson are orphans no longer! The Cannells returned to Eastern Europe after their 10 day waiting period, and the boys are both in their custody now (per her FB update; the blog hasn't been updated yet). They will soon get to finally come home. You guys were instrumental in getting them there. Thank you so very much. Words sound cheap. You've helped change (and save) their lives.

It is important to remember in the good and bad, that God is good. All of the time. Things in this world do not make sense. Tripp should not have to be suffering so much. Carson and Ivan should not have been abandoned and left in orphanages for the first parts of their lives. But God can bring good out of anything as he proves over and over and over again. I'm glad to serve a God who knows our journeys and has already gone before us. We could never do it on our own. Praise God we don't have to.

prayers for tripp

UPDATE: Courtney just posted an update on her blog.


Please continue to pray for Sweet Tripp and Courtney. Things are the worst they've ever been. He is in unimaginable pain. Tripp needs relief.

Update from Courtney:
Tripp is still in a tremendous amount of pain. We are trying to keep him as sedated as possible and working on switching his pain meds to something stronger (he has a VERY high tolerance for pain meds). Bathtime and diaper changes are unbearable. 

Please continue to pray for comfort for my little man- he is truly a saint and bearing a heavy cross right now. His wounds look terrible (especially his head and bottom) and he is getting weaker from lying without moving at all.

We are SO VERY blessed to have our wonderful pediatrician and the most caring and thoughtful pharmacist working practically 24/7 on finding the right pain medicine, making house calls, bring food, and just being there when I need both of them. They are AMAZING. and so are all of you wonderful prayer warriors. 

Thank you all for your continued love, prayers and support at this VERY difficult time.

classes start tomorrow

I apologize for the lame-o posts as of late. Between the yard sale prep, working on the boys room, trying to run at least three times a week, unpacking bandages etc, I just haven't had much time at night which is mostly when I blog. I do have a couple of good posts in my head, but not sure when they'll make it to screen.


We begin our adoption MAPP classes tomorrow and will be doing them for the next four Saturdays from 9:00 am to 4:00 pm in Greensboro. We will have to get Jonah up at 6:45 to do bandage changes before we go. My mom is staying with him tomorrow, and although I am completely confident both of them will be fine, I think I will be the sad one. It's hard to be away from him when it's all I really know. 


He's been saying "uh-oh" or "Oh no" for a long time when something goes wrong, but yesterday he started saying, "Uh oh. Oh no. Oh dear." No idea where he got it, but it cracks me up every time.


Will y'all keep Tripp in your prayers? He's battling infections, running high fevers, and things are just really not looking great for him right now. He could really use a miracle. And if you haven't read Courtney's poem she wrote for him today, please click HERE and read it. You will need tissues. I love that little boy more than words can say and we've never even met. I think his mom is pretty swell too. Thank you all for all your prayers and love. Courtney and I both appreciate them so very much.

tripp and anton

This will not be a "happy" post, but sometimes things that are really important aren't always happy. 


First of all, I'd really like to ask for your prayers for Tripp. Things are really not good. He's losing his vision in both eyes due to all the corneal abrasions he's had and resulting scar tissue. He struggles to breath and can barely stand up more than five minutes at a time, and that's on a good day. And that's with a trach. It seems with the eyes and the breathing, Courtney is running out of options. He's not gaining weight, and his mouth is torn to pieces. His teeth are also in terrible shape, and again, because of the EB and probable damage, there aren't many options. In addition to all of that, their family is having struggles in other areas, and it's just a hard situation. I was about to type, "How Courtney does it every day I don't know." But that's not true. It's because of love and because she would do (and has done) anything for Tripp. But having to watch him suffer and feeling so helpless wears her down. Please lift their whole family up in prayer.


Secondly, I don't think I've mentioned this here before, but my heart is heavy for another little boy. This is Anton. 

Anton was born by surrogate and sperm donor to a mother in Russia. The surrogate had twins. One twin was perfectly healthy. Anton had/has Recessive Dystrophic EB. His "mother" took home the healthy child and left Anton abandoned in the hospital. For over a year, he has lived in the hospital, never knowing the joy of family. He does have a nurse who cares for him, but it is my mission this year to help find him a home. 


Anton has had a history of malnutrition and his fingers and toes have already contracted. The last several months he has been at a more specialized hospital, and his care has been one-on-one. He's gaining weight, his labs are better, and he's eating heartily by spoon! (More than we can say for a certain someone I know... ahem.) He, according to volunteers and his primary caregiver, has a sweet, funny disposition and freely gives out smiles to anyone who shows him some lovin'. :)


My heart breaks for this little one, and honestly, I have thought long and hard about the possibility of adopting him ourselves. Unfortunately, I'm not getting the go ahead, and I don't feel we can take on his care too. But I so would if I thought there was a way. I'm not telling you to adopt him (but seriously, adopt him) but if you know of anyone who is open to adopting a special needs child, Anton would be a pretty special one. He could get much better care here in the states, and he deserves a Forever Family! If only he had a Courtney. (And on a side note, if I wasn't trying so hard to be like Jesus, I'd hunt down his so called "mother" myself and... well, never mind.)

You can follow Anton's Facebook page HERE and a website is set up HERE with his story and how to donate to his care. Please share his story with everyone you know. Let's find this deserving kiddo a home by the end of the year (or month!). Regardless, please pray for him too.

a funk and a cute baby

Hi Friends,


I have a heavy heart tonight and I'm just in an overall funk. I miss Bella. I'm aching for Tripp. EB sucks. 


Other than that, we're doing okay here. Jonah is doing well and recovered fully from his croup after four days or so. We try to do some food by mouth at lunch, and he's been doing okay with that. I can usually get him to eat two to four ounces by mouth, but often times, it's a struggle. He's napping a little longer during the day and sleeping well at night. The pump is still false alarming at night and waking us up, but Jonah is really trying to give us solid sleep. 


I'm loving my book/Bible study and I'd talk more about it right now if it weren't for my aforementioned funk. It's hard to talk about how you're learning to love better and bow your life in worship when it's been one of those days when nothing's happened but everything pisses you off. It was one of those days where you open your bathroom cabinet and everything falls out and you say a cuss word and shove it all back in. You scream at all your disorganized crap just because you feel like it's better to take it out on your hair dryer cord and your box of tampons than your family. Although your husband might argue you should have yelled at your q-tips too... he probably thinks he got their share. I don't really know what I'm talking about. I'm just sad and frustrated. But tomorrow is a new day.


And Jonah is THE BEST. I'm serious, y'all. I could not be more in love with this kid. He is the light of my life. 

You're smiling, aren't you? It's okay. It can't be helped.

prayer request for tripp

Jonah had a good day today. He ate well and except for the traumatic event that is being put into his highchair, he's been in a decent mood.

I'm not going to type much tonight. It was Girls' Night (WOOHOO!), and I got home later, and well, how can you really expect me to come up with a good post when I'm trying to watch Glee? A girl has her limits.

I just wanted to ask for prayers for Tripp. Tomorrow he's getting tubes in his ears, and they're also going to check his eye and either take out or change his contact. Thankfully he won't have to be intubated (since he already has the trach), but any procedure can have its complications when EB is involved. I know Courtney would really appreciate any prayers.

Happy Glee and Lost Night!
(Can you believe they're on at the same time??? TRAVESTY.)

prayer request for tripp

I just wanted to stop by and ask for prayers for sweet Tripp. He woke up Monday with a corneal abrasion and must have rubbed his eyes so much during the night it caused a big blister under his eyelid on the opposite eye. Courtney says he's barely opened his eyes the last couple days, and when he does, you can just see how much it's hurting him.

In addition to that, he's been breathing more and more poorly, and just generally seems to feel worse overall.

Courtney cannot go ANYwhere. She NEVER gets a break. She NEVER gets out of the house. Ever.

I know I feel about half-crazy right now with our EB issues (webbing toes, eating struggles) and the no naps thing. And our frustrations don't even compare to feeding tubes, trachs, and corneal abrasions. I cannot imagine how frustrating, overwhelming, and disheartening this must all be for her. It's like no matter what she does or how hard she works, the hits just keep on coming. For her and for Tripp.

I'm so sad for her. Please keep the two of them and also Tripp's dad, Randy, in your prayers.

You can follow Tripp's story here.

an update on tripp

UPDATE:
It's not pneumonia. But you probably already know that. I've been doing dressing change, eating lunch, and force feeding my child, so I'm a little behind. Courtney posted that Tripp's lungs look really good. The reason he's having trouble breathing is because of all the mucousy secretions from his virus. His trach is getting clogged up. (That's my really "I don't know anything about anything" explanation.) Anyway, they are starting him on Atrovent to help dry up the secretions, but have to be careful not to dry him out too much. They are still in the ICU, and he did have another episode this morning, but Courtney says she knows what to look for now and how to help him before he gets in too much trouble. For her explanation (which is much better than mine), you can visit his Caring Bridge site.
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An update from Tripp's Caring Bridge:



Hey guys. Real quick update...Today Tripp was taking a nap and started breathing really heavy. I didn't think much of it.. just that he was probably in a deep sleep. Well, when he woke up, he was in a complete state of panic. Nothing was coming through the trach at all... he was making noise through his mouth but by trying REALLY hard to do so. His feet and hands started turning purple and I could tell by his face that something was not right. (Thank the GOOD LORD that my mom had just gotten there and I wasn't by myself). So we put him on the changing table... and within seconds, he was completely grey... everywhere- his mouth, face eyes... everything. There was no air coming out of the trach, so I took that one out and put a new one in. There was still no air coming out. By this time he was giving up and had closed his eyes. I shook him and they opened back for a second. I got the ambu bag and gave him some breaths through the trach. Still nothing. So I did it again. He was still moving some air through his mouth and had a pulse, so I knew breaths were the only thing I could do. Then I called 911. Soon after, he finally started breathing through the trach and starting getting color back. The paramedics came in about 10 minutes (Thank God I had gotten him back breathing). By then his oxygen was about 93% with blow-by oxygen ON. So they brought in to the Ochsner ER by ambulance. Yeah... not over yet. THEN, he had another one of the exact same episodes in the ER. Except this time, the nurses were just standing there watching ME try to unclog the trach (oh, by the way, they think he is doing that because he is getting mucous plugs in his trach because of the thick secretions he's having.. That OR pneumonia). Anyway, so going back to me being the doctor and the nurse and everything else.... there ya go. So when no one else would do ANYTHING.... I called my ENT (THANK THE GOOD LORD ABOVE FOR OUR ENT......... I COULD NOT HAVE A BETTER ONE. SHE IS AMAZING...She's not only Tripp's ENT, but MY therapist.) I called her cell and she LEFT HER HOUSE (which is close to the hospital, thank GOD) and was there in 5 minutes. She changed the trach out again and we got it unclogged. SOO... we are now in ICU and he is stable and breathing better. He is on oxygen and humidified air to try and thin out the secretions. Please continue to pray for him to get better and also for us not to catch anything else from this hospital!) I will try my best to keep you updated. I cannot express how grateful I am for all of you and for everyone's constant love and support. I know it's what is keeping me going. Thank you. Love you all. Courtney



Can you imagine? Can you imagine watching your child wake up and having to see that panicked look in his eyes? Can you imagine literally breathing for him until help arrives? And then, you go to the ER and it happens again, and the people you are trusting to care for your child are just STANDING THERE while YOU have to be the one saving your kid's life... because they DON'T KNOW WHAT TO DO.



That's one of the worst things about EB. Half the time, the people who are SUPPOSED to know, who are SUPPOSED to be able to help either just stand there or make matters worse. YOU, as the parent, literally hold your child's life in YOUR hands. It's up to you to nurse, doctor, educate. It's overwhelming, exhausting, and completely terrifying.



Please be in continued prayer for Tripp and his parents. We've only experienced a tiny fraction of what they have, and I know how scary it was for us. Please pray for strength, courage, perserverence, and of course healing.



Thanks. :)

URGENT PRAYER REQUEST FOR TRIPP

Please, please say prayers for Tripp tonight.

Courtney just texted me and said that he turned gray and stopped breathing earlier today. She had to give him breaths through his trach and called 911. They took him to the ER, and he has been admitted.

They think he has pneumonia.

Pneumonia is bad for any baby, but is especially bad for an EB baby.

Please visit Tripp's Caring Bridge if you would like to leave them a message. I don't know that Courtney has had any time to update it, but I'm sure she will when she gets a chance.

Thank you so much.

a long day and poo on Ida

A very long day today.

Jonah only took 18 ounces, and it was a MAJOR struggle getting him to take even that much. He's now fighting us even in his sleep. He's a smart one, he is. I hope this is just the last couple days and not a habit, or we'll be in trouble and on the road to a g-tube yet again. He'll be weighed again on Friday, so we'll see where he stands.

He's still not napping except in my arms... like I said... Long Day.

Don't get me wrong, he's sweet and beautiful, and I love holding him, but I get so tired struggling to get him to sleep and feed him, all I want to do is lie down... if only for thirty minutes. But as soon as I try to put him down, his eyes pop open. And unfortunately, most of the time he's not waking up happy.

Sorry, today is a negative day. We haven't even stepped out the door in two days, something about a tropical storm passing through... constant rain... frigid wind. No fun.

I'm having a hard time knowing how to entertain him (and myself) for a full day stuck in doors with no napping. We've had rough nights the last two or three, so I think I'm just overly tired. It's my night tonight, but I'm hoping it goes well, and I can catch up a little. My whole perspective changes when I'm tired, and I HATE being a whiny baby. I know we have it good.

Could you say a few prayers for Tripp tonight? He's struggling with a nasty cold or virus or something and is also having major pain from chronic mouth blisters/sores (EIGHT TEETH last I heard). Courtney is having to suction him about every five minutes. I know by the way I'm feeling, it must be 20 times harder for her. And she handles it with such grace, always thankful. Anyway, if you could say a prayer for Tripp to feel better soon and for strength for his parents, I know they would appreciate it so much.
*******************************************

And on another note...

HAPPY FIRST BIRTHDAY, JUDE! WE LOVE YOU BUDDY!

go panthers!

Dear Tripp,

GO PANTHERS!

Love,

Jonah

update on tripp

Here's an update from Tripp's Caring Bridge.



Hey it's mom. Well, we certainly knew that a tracheostomy was in the near future, but weren't really expecting it today. He went into surgery around 10:30 this morning and the plan was to go in and cut some tissue that was blocking his airway so he could breathe better. Well, when his ENT came out into the waiting room, I knew as soon as I saw her face that something was wrong (she has gotten VERY close to Tripp and our family, we LOVE her.) Anyway, she said that his airway was so swollen and had what she thought was some granulation tissue. She showed us pictures of the scope... pretty intense. Don't know how the little man was even breathing. She said that it was so swollen that she didn't think it would help to make the cuts. So the decision was pretty much made right there for us. THAT was tough. He is now back in ICU and doing well. Everything went fine, thank GOD and thank EVERYONE who was praying for our little fighter. He is starting to breathe a little bit on his own, so they are weaning the oxygen a little at a time. He is the most beautiful little thing... even more so now. I just love him so much and respect him so much. He is so strong. Stronger than I could ever be. He's amazing. I just can't wait until the initial shock and aggravation wears off and he can know what it feels like to actually be able to breathe!! And I am having serious withdrawals because I haven't held him and rocked him in like 3 days.. AHHH... I just want to pick him up and squeeze him and tell him how proud I am of him. Randy and I thank you from the bottom of our hearts for all of your thoughts and prayers. We need them so much and all the encouragement really helps us in such a difficult time. THANK YOU.Well, I just wanted to let everyone know that he now has the trach and everything is so far so good. I will try my best to keep you updated.


All my love, Courtney

So anyway, obviously a tracheostomy wasn't the desired outcome, but of course, the ultimate outcome is that Tripp can breathe easier now, which is what everyone wants. Courtney said that his skin is good, and he only got one little place on his arm from the blood pressure cuff. Pretty amazing.

Thank you for praying.

prayer request for baby tripp

Hey Everybody!

It's me, Jonah.

This is my friend, Tripp. He is five months old.

He has Junctional EB too.

That really stinks, huh?

Anyway, my mommy told me that he is in the hospital again tonight. He has had to be in the hospital a lot lately because he's having a lot of trouble breathing. They've moved him into the ICU. See?

Anyway, they scoped him, and his epiglottis is swollen, and tomorrow he has to have surgery to get some tissue cut in his throat. They are worried that it might cause blistering or scarring, but they don't have any other choice. It's either this or a tracheostomy, so they want to try this first.

Would you please pray for my friend? His mommy is so sweet and has been such a big support to my mommy, and I hope to get to meet Tripp one day really soon. He already has a g-tube, so he's trying to help me feel not as scared about having to get one. He's very brave.

Maybe you could also visit his Caring Bridge Site and leave him (and his parents) some messages of HOPE and LOVE! Mommy remembers when I was in the hospital with breathing problems over Easter, and she was so scared. She says this g-tube stuff is nothing compared to breathing issues.

So please pray for Tripp and his parents, Courtney and Randy.

All EB kids are SOOO amazing, but Tripp holds a special place in our hearts.

Thanks y'all! You're the best!