prayer request for anton

Could y'all please pray for Anton tonight? He had a swallow study done today. He's been choking and having a really hard time eating. Anyway, the study showed that everything he was eating and drinking was going into his lungs one out of four times.

They had to stop all food and drinks immediately and are planning on doing a g-tube in the next couple of days. They would have done it already (or tomorrow at the latest), but there is something malformed about his heart (may be nothing) and so they have to do an ECHO before they can do surgery to ensure that he can handle it.

The doctors there are new to EB but are consulting the experts in Cincinnati and listening to all advice. They are being very cautious and Vanessa says that everyone has been wonderful. Please pray for courage and wisdom for Jason and Vanessa too. It took me 14 months to build up enough courage to get a g-tube for Jonah and a month to prepare all my information for the doctors. I just can't imagine how overwhelming it is when the decision is forced on you so quickly, with no time to prepare. I know prayers for peace would be appreciated too.

You can read updates on Vanessa's blog HERE.

Thanks everyone!

jonah update

I emailed the doctor last night about the possibility of Jonah having Cough Variant Asthma. She emailed back saying that is what she was treating him for when she sent us home with a nebulizer, albuterol, and pulmicort almost a year ago. I didn't know that's what she was thinking he had... we never called it that. He had a horrible cough at that time but that was when his breathing had gotten so bad. So we came home with the nebulizer for that.

But I still have the nebulizer and I AM AN IDIOT for not starting breathing treatments days ago. I don't know why I didn't think about it except that I AM AN IDIOT. When we did breathing treatments last time, they were more for his horrible breathing, so I just didn't think about it for the cough. Grrr. I'm so incredibly frustrated with myself. I shouldn't have been so stubborn and arrogant and should have called the doctor earlier. Pre-nebulizer though, all they did was suggest Benadryl (which doesn't work for him) and I would just get so aggravated. Being humbled sucks sometimes.

Anyway, I started breathing treatments today (and LOTS of Mucinex). We worked three in and I'll work in a fourth if he wakes up enough tonight to cooperate. So far I can't tell much of a difference, but hopefully tonight will be better. He managed to hold down the four ounces I fed him for breakfast (I usually give him 6 to 8) but threw up all of the 5 oz (I usually give him 7 to 8) I fed him at lunch. I fed him another 5 oz at dinner, and so far so good. I thought he was doing some better this morning, but then he threw up his lunch and coughed ALL the way through nap. It was horrible.

He acts okay except for having moments of exhausted. I don't even think he knows what "hungry" feels like or is. I don't know how he's not starving though. He is worn out though and all he wants to do at nap and bedtime is just lie in his crib. He won't let me hold him upright and rock him to sleep and he won't sleep with me in bed so I can keep him propped up. And I try to prop him in his bed but he just wriggles his way back down to where he's lying flat. Poor thing just wants to be comfortable and sleep. His cough is so violent and he has bad spells of 10 to 20 minutes where he can just hardly catch his breath. And if he has anything on his stomach, he throws up. He hasn't thrown up at in his crib at bedtime yet (he did at nap time on Friday) though, because he's been throwing it up before he even makes it there. So if he can continue to hold down dinner, he may throw it up in bed, which would probably mean middle of the night bath/dressing change. So I'm just praying he can hold it down and the coughing subsides tonight. Nap was not encouraging though.

This is a photo I took with my phone right before lunch today. He was so tired, he had just rubbed his eyes like crazy. And then he couldn't sleep when it was time for all the coughing. It just breaks my heart.

And then he had this huge blister at dressing change time. (The white one is one from yesterday... the white is Desitin.)

So it was just an "EB sucks" sort of day.

Usually I don't get mad at God, but I'm having a hard time with this one. Being able to eat and sleep just seem like things you should be able to do. I don't know why it has to be such a struggle. I'm just so sad for him.

prayers for Jonah

Will y'all please keep Jonah in your prayers? He's had a cough (no other symptoms, just a cough) for about two weeks now. It's gotten more persistent in the last week, and he hasn't been able to sleep well at nap or bedtime for the last four or five days/nights. Worse than that, he's thrown up every bit of food we've given him since Thursday morning. He just can't hold down his feeds when he's coughing. Thankfully he's drinking a lot of water and we're running Pedialyte overnight, so he's not dehydrated yet, but he's definitely not getting the nutrition he needs for his skin, or for anything, really. (And not the important part, but we sure are having a hard time keeping him clean/his bandages clean with all this throwing up.)

He had thrown up four times by 9:00 this morning. We've tried Delsym, Triaminic, some kind of all nautral honey based cough syrup from Whole Foods, and Hyland's Nighttime Cold 'n Cough for Kids. Nothing is even TOUCHING it.

prayer request for katherine

Hi, Friends. I know many of you read Matt's Aunt Katherine's blog, and I just wanted to post a prayer request for her that I just posted on her blog. I'm just going to copy and paste what I wrote there.

I just wanted to let you know that Katherine isn't doing very well. She was taken by ambulance to the hospital last night and readmitted with very high blood pressure and severe headaches. Her blood pressure has come down some with medication, but the terrible headaches are still very present. They did a CT scan, and everything looks okay. So right now they don't know if the headaches are still related to her blood pressure or the stress of all that's going on. She has dealt with terrible migraines for a long time.

Please be in prayer for Katherine, that they can continue to regulate her blood pressure, that they can find the cause of her headaches and/or she can get some relief, and that she will be able to return home soon. Please be in prayer for Grayson as he figures out the logistics as far as care for Amelia and the boys. We're not sure how long she will be in the hospital.

Thanks so much.

prayer request

Hey Friends.

I have a prayer request for you tonight.

My brother and his wife are good friends with a couple in their town. The couple's daughter, Hallie, not yet two years old, was in seemingly good health, besides what they thought to be chronic ear infections. On August 28th, Hallie had a seizure. They rushed her to the hospital, where it was found she has a brain tumor.

She has been in the hospital ever since. She immediately had surgery, followed by keeping her in a coma to let her brain rest. She's had ups and downs in the hospital, including an infection and the possibility of some brain damage. She is doing well as of late. Her MRI results were good, showing very little damage to her brain and her spinal fluid came back with no signs of cancer in her spine! All of that being said, her second surgery to hopefully remove the rest of the tumor is tomorrow at 7:30am EST. It will last about four hours.

I would love it if between 7:30 and 12:30 (you know they always run late), when you think of her, you could say a prayer for her. My sister in law set up a google document HERE if you'd like to sign up for a 15 minute slot, but feel free to just pray on your own too!

Thank you all so much. I know the prayers for Hallie and her family are sustaining them all.

the last couple of days

Jonah has had a rough couple of days. Yesterday morning, he just woke up mad and pretty much screamed and cried all the way through bath and dressing change. And then it was off to the Pediatrician's Office for his 18 month check-up. NOT FUN. He was inconsolable the majority of the time. He had to get a shot, screamed any time the nurse or doctor touched him, and needed blood work done. There's a list of things he needs checked at least annually, and it's been a good while since he's had any done. We can't adjust his iron, vit c, zinc etc until we know where his levels are now. Anyway, I unwrapped his only good arm, four of us held him down, the vein was ornery, it took five to ten minutes to get any blood, and then the little bit we did get immediately clotted and was useless. It was a disaster and Jonah was hysterical. We didn't try again. He had had enough for one day.

He then came home and took a two hour and 45 minute nap. Max for him these days is about an hour, so I know he was worn out.

When he got up, he finally ate lunch (at 4 pm), and then we went over to our friends' house for dinner. Jonah seemed to be back to his mostly happy but slightly fussy and clingy self, and we had a good time.

Their son, David, is only about a week younger than Jonah. He is super cute!

Micah is a trip!

Elizabeth is IN LOVE with Matt. She is a huge flirt, and I'm concerned for her parents when she's 14. (Look at that vein poppin' out. She was SERIOUS about her crush.)

Don't be fooled. Matt thought she was pretty cute too.

Jonah had fun playing with different toys and hanging out with other kiddos. This is the last photo I took before my camera battery died. He never quite figured this toy out.

But then, this morning, over the monitor, Jonah woke up with a horrible sounding cough. Just out of the blue. It was more like a bark than a cough, and it sounded like it hurt. He just wasn't himself today.

Poor thing. Throughout the day, his breathing got more stuffy and he started to run a low grade fever. I took him back to the pediatrician this afternoon. More screaming fits ensued as she checked his throat and ears and listened to him breathing. She sent us to an imaging office to get xrays of his lungs and trachea. You can imagine how well that went over given the last two days and what Jonah had been put through. We then had to head back over to the Pediatrician's office (it was well after 5:00 by this time) to await the results.

Jonah has Croup and is being treated with a three day dose of steroids. Dr. B was hesitant and just wanted to know for sure before she prescribed them, as she says the steroids suppress his immune system and was worried about his wounds getting infected. But the EB folks I've talked to say the steroids usually help heal the boo boos, so hopefully it will be a good thing all the way around.

But if you feel like praying a few extra prayers for Jonah, you could pray for good rest, longer naps (one hour a day is not enough for him to stay happy and healthy), that he resists infection, and that his inflammation/coughing doesn't cause any blistering in his airway. All the coughing is also causing him to throw up a lot more (three times today), so we're running Pedialyte in his pump tonight instead of water.

While you're praying, I would really appreciate you lifting up my friends, T and J and their families. T is losing her battle with cancer and will be meeting Jesus very soon (most likely within the next week), and my friend J is fading fast after a long battle with ALS. Both of these women have been huge spiritual influences in so many people's lives, and saying they will be greatly missed is a huge understatement. Many hearts will be broken in their passing. But we will also be so happy that soon their suffering will be over, and they can finally be healed and whole, dancing on the Streets of Gold. Please keep their families, especially their husbands and children, in your prayers.

(UPDATE: I just found out that J passed away this afternoon/evening. Please, please lift up her family.)

As always, many, many thanks.

prayer request for daylon

I just wanted to post a prayer request tonight. I don't know if you've had a chance to follow Daylon and Bella's transplant journeys, but the Edlings (Daylon's parents) got some pretty tough news yesterday. Between dialysis and the drug he's having to take for his VOD (a complication of the BMT), he's suffered some brain hemorrhaging and probable brain damage.

Here is the link to the update in his Mommy's words.

Please, please be in prayer for Sweet Daylon. I just can't imagine what his parents are going through right now. What a hard road.

title goes here

This will be quick because I don't have a whole lot to talk about, and my sister has my camera this weekend so I don't have any new photos to fill up blog space. BUT...


We've had an okay day. Jonah's been fussy and a little frustrating, but I guess that's in typical not-quite-toddler fashion. We got up and did dressing change, fed Jonah, and then headed up to Stone Mountain to visit with my Maw-Maw and Paw-Paw. My brother and his kids and my dad were all going to be up there today, and I have been wanting to take Jonah for a while, so it was a great time. We had a nice lunch and got to hang out a little, but we had to stay inside while the kids went on golf cart rides and to the playground, so we missed out on some good family time. Meanwhile, back at Maw-Maw's cabin, Jonah was fussy, clingy, and an all around a pain-in-the-patooty. So we cut it short and headed back home. He was overly tired because he had only slept 45 minutes on the car ride up there, and he's always pretty ornery in a new place.


Peyton and his kids (ages five and three) came into town on Thursday night, though, so I had gotten to spend some quality time with them before today. Peyton came yesterday morning, while my mom took the kids to the park and library, and helped with dressing change. Then I went over to my mom's for a late lunch on Friday and hung out with them and the kids. Last night, Matt and Peyton kept Jonah and played a couple games of chess (Matt is a very good chess player, and he says that Peyton is a smart player and good considering he hasn't played that much) while Mom and I took the kids to see a local performance of Peter Pan the Musical. It was fun, and although the kids were a little restless at the beginning, they really liked it (it was three hours long - they did GREAT!).

That's about it for our weekend so far. We hope to make it to church tomorrow, but don't have any big plans. It is still SO HOT here, and I'm praying for relief soon. I'm fairly certain it got to 100 degrees here today, and you'd think it would have been cooler up in the mountains. You would be incorrect. And the humidity is just so bad. You just feel damp and sticky as soon as you walk out the door. Gross. And impossible for Jonah.

Please say some extra prayers for Daylon and Bella tonight. Daylon's had some bleeding on the brain and a seizure from a trial medicine he's having to take to prevent a potentially fatal condition (VOD) from getting worse that has resulted from Transplant. So far, they've been able to avoid surgery (which would hold GREAT infection risk for him) and have stopped the medicine and increased his platelets in hopes to thicken his blood. Bella is on the same medicine for the same condition. Both of them are on continuous dialysis because their kidneys aren't functioning, which thins the blood further. VOD is potentially fatal. Kidney failure is potentially fatal. Stroking from this medicine is potentially fatal. Nothing about this transplant is easy. Please be in prayer for both of them. As always, many thanks for the prayers, love, and support for all the EB Sweeties.

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.)

jonah update

Jonah is about the same health wise. I took him back to the doctor today, and Dr. B said that he has the beginnings of an ear infection (caused by his virus, apparently). We gave him his first dose of Amoxicillin this afternoon. He has lost almost a pound a half since Wednesday. If you have been following this blog for any amount of time, you know how hard we work for each and every ounce and how we have fought so hard to avoid a g-tube. You know the loss of those 21 ounces is KILLING me. He's barely eating any formula whatsoever, but does allow a few ounces of Pedialyte here and there. He probably had five ounces of formula today and about eight ounces of Pedialyte.

Thank God for Pedialyte!

He is sometimes having a wet diaper every six hours. Sometimes not. We are fighting tooth and nail to keep him hydrated. It is very draining, frustrating, and frightening. If we can't keep him adequately hydrated, he will have to go to the hospital for IV fluids. IV's are never a great option with EB kids, although often inevitable. Dr. B wants to check his weight again on Friday.

Please, please pray for Jonah - that he will begin eating again, will stay hydrated, and will begin gaining back the weight he's lost. I'm praying that this antibiotic will be our miracle.

I know it's just a virus and an ear infection, so many of you may not understand why it's such a big deal, but dehydration and malnutrition are the top reasons (next to infection) that EB kids get into serious trouble.

I'd be lying if I said it doesn't scare the sh*t out of me.

Eat, baby, EAT!

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.

this and that

Hi Friends.

This will be a short post because it's 10:15 pm and the first time I feel like I've really relaxed all day. I thought it was cold outside just based on how it felt when I opened the back door first thing this morning. Then my friend, Aimee, came over this afternoon and told me it was in the 50's and beautiful so the three of us went on a walk. And then Jonah cried the whole time, we had to cut the walk short, and he had to be carried back. But that's neither here nor there.

We've had an okay day, but Jonah refused to even take his thirty minute nap in bed today, so literally, the only time he has slept today has been in my arms. I've gotten very little done, but did manage to clean the whole kitchen while Matt gave Jonah his last bottle of the night.

Oh, Katie wanted me to let you guys know that as far as items donated, we are good to go for the auction. I think we have ninety some items, which is just amazing (we were originally hoping we'd get twenty!!!). THANK YOU SO MUCH! This is going to be so great. Now we just have to get the word out so there will actually be enough people to bid on all this great stuff! If you'd like to offer a back-up item in case some of the stuff falls through or donate money to help with shipping costs (so 100% of the bid money can go to DebRA), you can email Katie at jonahsebauction@gmail.com.

And before I end this I would just like to ask for prayers for Jonah tonight. His little boy parts are in very rough shape right now. This happens once in a while, but this time they will not stop blistering. Usually the blistering stops after two or three days, but we've been draining three to five blisters a day in that area for probably the last two weeks. It's really hard for it to start healing when the blisters JUST KEEP COMING. Several times today he would be perfectly happy and then would suck in lots of air and just start crying. I'm pretty sure he's crying at least part of the time when he's urinating. I'm keeping Desitin on him with every diaper change hoping to create a barrier, and I'm sure it's helping some, but the raw areas are so widespread right now... I don't know. I just know it hurts him, and I want it to stop.

As always, thanks so much for praying.

I don't know about you guys, but I am so ready for the weekend. Five to eight inches of snow expected here. I could do without that, but a weekend's a weekend, so I'll take it.

jonah in a new blue chair

We've had another GREAT day today. Jonah ate over 28 ounces. No luck on the solids today, but I also didn't try very hard. He slept in a little, we missed our 7:30 start time for dressing change, so we didn't start until 11:00 I think. We can start at 7:30 and get done by the time he needs to eat (around 9:00) or we have to wait until he's eaten and had a short (in my arms) nap.

Here is a random photo from yesterday.



A man in Matt's parents' Sunday School class made this rocking chair for Jonah. Thank you so much, Robert! We put Jonah in it for the first time tonight, and he really liked it. You really have to watch him though as he likes to lean forward. Right now it's a high supervision toy, but I know he'll really like sitting in it to watch sports with Dad as he gets bigger.

Please excuse my complete inability to manually focus my camera on this next one. As quick as Jonah moves, it's hard to get it focused and snapped in time. Shaina and I both have problems with our cameras refusing to snap half the time when they are on Automatic Focus. We have Nikon D40's. Has anyone else had this problem? It is incredibly frustrating. I can't tell you how many times I've missed the best smile or greatest shot because the camera will just randomly stop snapping. Grrr.

After Jonah's dressing change today, Matt's mom, Jonah, and I headed back out to Gina's new cafe, Miller's on Main. A couple of you have asked where it is. The address is 4339 South Main Street. It's about a mile from the intersection of Main and Clemmonsville, kind of out in the country. It's a cute little place, and the prices are great! I've enjoyed both meals I've had there so far. The chicken stew is soooo good. (Here's the post I did on NC chicken stew if you are wondering what it is.)

Gina held Jonah the ENTIRE time and walked him all around the restaurant. I got to eat peacefully. Now THAT is service. :)

And then I forgot to leave our waitress (our Pinedale friend, Katelyn) a tip. Yeah, it's bad, I know. I'm in the process of rectifying the situation. Sorry, Katelyn. I totally acknowledge the fact that I am a complete loser, and possibly the worst customer EVAH!

Later this evening Matt's mom and I went to check out a location for Jonah's birthday party. It is the PERFECT place, and I'm just hoping that it's not already booked. We won't know until we can talk to the lady who does the booking sometime in the next couple days. I think I'm going to do a carnival for his birthday. I have all these great ideas, but I'm completely overwhelmed. I know I have lots of great friends who will be willing to help (hint, hint), and I'm sure it will all come together, but right now it feels impossible (games, prizes, crafts, food, decorations... yikes!). I know I'll go overboard and it will probably be ridiculous to some people, but I just want it to be the greatest. I know I shouldn't think this way, but I can't help thinking, "What if this is the only birthday he ever gets? I want it to be so special." But maybe I should just think, "Wow! We never thought he'd make it this far. What a reason to celebrate!" Either way I get to rationalize a big party, and nobody can say anything about it. It comes with the serious illness territory. The mommy gets to go crazy at birthday time. Period.

**************************************

I also wanted to mention that Meg and Jeff (Leah's parents) have posted an address where you can send cards if you feel so led. She would like them sent to her parents' house. Here is the address she has posted:

The Turnquists
2853 Shipley Road
Philadelphia PA 19152

She also published a beautiful post today and included one of the last photos of Leah. It is so precious, and I'm so glad that Meg has it. Beautiful Leah.

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I'd also like to ask for prayers tonight for Baby Kessler (high school friends' baby) as he has just been released after being hospitalized with RSV. He is only a month old. And if you could also pray for Matt's baby cousin, Jake, Katherine's youngest, as he also tested positive for RSV today. He was hospitalized twice last year with it, so we are all just praying it's not as severe this time.

Thanks as always.

sweet leah

I just found out that Leah passed away this morning.

Her heart stopped and they tried to revive her unsuccessfully. Nobody really knows why or whether or not it was related to yesterday's g-tube/teeth removal surgeries.

We are all so heartbroken. Please pray for Leah's entire family, especially her parents, Jeff and Meg.

I don't know what else to say.

bummage begone

A few months ago, Jonah's Child Developmental Services Case Manager asked me if Jonah reacts differently to children than to adults. It was just one of those standard development questions. Anyway, I had to say I didn't know because he is rarely around kids. His close-by cousins have been sick a lot these last few months (colds and the like), and he doesn't do daycare or the nursery at church because of germs. Anyway, I told her no.

But Ms. B, just to answer your question - "Uh, yeah, just a little."

Please enjoy this two and a half minutes of Jonah thinking his cousins are absolutely hilarious.

I'm a little late tonight (Christmas with Matt's family), but I hope you have read Leah's blog by now. Everything went really well today. The g-tube was placed without incident, and she had eight teeth removed. And thanks to all those prayers, there is no damage to her mouth or face. Praise God!

Please continue to pray for the rest of Leah's hospital stay and that she will remain infection free. They hope to go home on Saturday. Also, please be in prayer for Tripp tomorrow as he's also getting his teeth removed.

Thank you so much for your prayers. I know Meg, Courtney, and I all appreciate them very much.

prayer requests

UPDATE: Leah is in recovery and did well during surgery. I'll update more when I know. That's all I've got right now.

I've had a lot weighing on my heart lately, but didn't want to share until after Christmas as to keep the bummage to a minimum.

We've had two losses (that I know of) in the EB Community this month. One was a three month old baby with Junctional EB and the other was a six and a half year old little boy with Junctional EB. Baby L got a g-tube, developed an infection, and passed away in early December. The little boy, W, had been fighting severe Junctional EB for six years, and finally, his body just couldn't take it anymore. He died in his sleep on Christmas Eve. I can't tell you the sadness I've felt for their families, especially their mothers, whom I don't even know. And of course, I've had a certain amount of sadness over thoughts of losing Jonah. Maybe it's crazy to think of his death when he's doing so well. I don't know. I know I should focus on the positive, and I do most of the time, but sometimes this stuff - this cruel reality that is Junctional EB - just slaps you in the face. To think that he could be doing well now, but that we could lose him at six years old. I can't handle it. And I think about it. A lot. I just can't help it. And I cry and obsess and cry some more. And then I'm okay. And then I'm not. We were told that non-Herlitz could have a normal life span (with MANY difficulties and complications), but I think I only KNOW of two Junctional EB adults. To me, that just doesn't add up. Anyway, I was doing really well with all of it and then we lost L and W, and I'm in a low now... really struggling with focusing on the now rather than worrying about the what if.

And I guess the real reason I'm posting tonight is to ask for prayers for Leah and Tripp.

Leah (already with a trach) will be getting a g-tube and her teeth taken out tomorrow.

Tripp (already with a trach and g-tube) will be getting his teeth (ten in all I think) taken out on Thursday.

I hate what Courtney and Meg are having to go through. It is not fair that two such young, beautiful mothers have to deal with this. They are having to have their babies' teeth REMOVED because their teeth are tearing their mouths to pieces. That is so incredibly messed up. And please pray for Leah as she gets her g-tube. Thankfully she will not have to be intubated since she already has the trach, but please pray that she will resist infection while in the hospital.

Thank you for keeping all of our sweeties in your prayers. And if you are making any end of the year donations, please consider DebRA or the Epidermolysis Bullosa Medical Research Foundation. We are desperate for a cure! Please help if you can.

prayer request for leah

Our EB friend, Leah, is in the hospital. She stopped eating on Christmas day, and it appears as though she will be getting a g-tube very soon. Please be in prayer for her (and her family), as any procedure is complicated for an EB baby. Thankfully, she will not have to be intubated, since she already has a trach, but there is still danger for infection and complication.

You can follow Leah's blog here. She is just a few weeks older than Jonah and also has Junctional EB.

a night out and lots of gushing

Update: Okay, nevermind about the Reglan.

This will be quick but I just wanted to let you know we are still here and doing okay.

Yesterday (Thursday) was my birthday, so Matt took me out tonight to dinner and a show. I knew he had something planned, but he kept it all a surprise. We ate at Sweet Potatoes (so amazingly tasty) in downtown Winston and then went to the Alliance Theatre and saw "Christmas My Way," a Frank Sinatra Christmas musical. Kathryn and her mom kept Jonah so we could go. It was all very fun, and it was great to have an evening out. Did I mention the food was delicious? Because it definitely was. I'm so thankful to Matt for taking the initiative to plan it all. It was exactly what I needed. He said something like, "I know you like experiences more than possessions," and he's exactly right. I'd so much rather have a memory than a thing. It was wonderful.

The evening was just a little bit tainted though because I am really worried about Jonah. He had barely been gushing at all (we were going about ten days between and then having maybe one bad day), and since last Friday, he has gushed (three to four ounces at a time) six of the last eight days. Up until today I thought we were just doing our normal acid reflux stuff, but today he had huge gushers five times. One with every feeding. I bet he puked at least ten ounces today. A couple of times it was tinged with blood. I called Geri, the DebRA nurse educator, and she said that all the gushing has probably caused blistering in his esophagus, and that the blood is just one of those blisters having drained. She says as long as it's just lightly tinged, the blood is nothing to be panicked about.

More than anything, I just don't understand why it's so bad all of a sudden. It seems like if it was the milk protein allergy or lactose intolerance, he would have started this weeks ago when we changed his formula. He has been great for weeks! We're not doing anything differently. And obviously all the throwing up is damaging his poor throat. And I guess the worst part is I just don't know what to do about it. I mean, do I go to his regular pediatrician or GI doctor for lots of tests and stuff when ANY procedure is very complicated and hard on him? Can they even do anything about it, especially if it's EB related? How long do I wait before I pursue medical help? I get so frustrated that I just don't know what's serious or what's regular baby stuff... or that even if it is "normal," it is much more serious for him than for a "normal" baby. I get angry that so little is known about this disorder, it just feels like a guessing game. Ugh. It just seems like every time we have a breakthrough (eating so much better), the bottom has to fall out.

Why is it so bad now? He doesn't act sick or like he's in any pain, except when he's actually throwing up. Afterwards, he's laughing and smiling and can usually take the rest of his bottle once it's over. Obviously he's gained weight pretty well, even when he was gushing regularly, so that's not even what I'm really worried about. I guess I'm just worried that something bad is causing this... something more than the normal stuff, it seems to be getting progressively worse, and now the blood thing, so I know it's doing damage.

Grrr. I'm just so frustrated. I don't know what to do. I guess I'll call whatever doctor is in the office in the morning, but I have no idea if there's anything they can do. I thought I'd ask about the Reglan, since several of you have mentioned it. He's on a high dose of Prevacid, but I've been told that doesn't help with the throwing up, it just helps it not hurt so much. Maybe Reglan would help him keep it down?

Please pray that Jonah will feel better soon, and that it will be clear to us that this is a "ride it out" sort of thing or a "we need to pursue this" sort of thing.

I'm sorry this post is such a stark contrast to the previous one. I don't have any less faith or thankfulness today than I did on Wednesday when I wrote that post. But I am worried and do feel more helpless (helpless not hopeless) today. I just don't know how to help him.

a couple updates

Jonah slept through the night! He had been getting up three to four times a night here lately, so the sleeping all the way through was a very welcome change. However, now we are down a feeding, so I'm praying he'll compensate during the day.

He's still been eating very well, usually averaging between 25 to 30 ounces. Thanksgiving Day he ate horribly, but it was partially my fault. I realized the next day that I had been inadvertently using level one nipples part of the time. Debbie had bought some new bottles for us, and I wasn't even thinking about it when I dried them and put them together that, even though they are eight ounce bottles, they come with level one nipples. He does and has been using level three nipples for a very long time, and as much junk as we add to his bottles, I'm sure he was completely frustrated that nothing was coming out. I felt terrible when I realized it. I had meant to change the nipples out for ones I had brought from home.

That may have had something to do with making his lip worse, but it had blistered several days before, so I knew it was just a matter of time before that skin sloughed off, which it did on Friday. And unfortunately most of the photos you saw in the Thanksgiving post were taken before it got so bad. It is still very bad, bleeding with every bottle and many times when he puts a toy to his mouth. Then it will re-scab, but it happens again and again. I'm trying to keep Aquaphor on it, but I'm at a loss since I can't use my ever loved Polysporin/Desitin combo. It's hard when his lip is in such bad shape, because you can't use anything on it that's bad to ingest.

Off to attempt our first feeding of the day, but just wanted to give those couple updates. Continued prayer for his lip (which is proving impossible to heal) would be appreciated.

Thanks :)

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. :)