Jonah's had an okay day. He's been pretty fussy and really ticked that he had to come inside when it got too hot. It bugs me that 80 degrees and BEAUTIFUL is too hot for him. We are both going to lose it this summer. I have had a killer sinus headache most of the day, so I've been pretty pissy and unpleasant myself. Jonah is in bed and I am soon behind him. Tomorrow is a new day! On a bright note, Matt took Thursday afternoon and all day today off from work to watch basketball, so it's been really great to have his help, but most of all his company, these last couple days.
I don't know where this week has gone. It was Saturday and all of a sudden it's Friday. Some of them drag on and on but this one has flown by. On Wednesday, one of my best friend's daughter's had surgery on her ear (they had to remove some sort of cyst and hope to restore her hearing in that ear with an additional surgery down the road). Matt stayed with Jonah on Wednesday night, so I could go for a visit. She was so tired and grumpy, and I felt so sad because usually she is wearing a contagious smile and has a bubbly spirit... just like her mommy. I saw her today though, and she's feeling MUCH better.
Last night, I went to my friend Lindsey's house for our monthly scrapbooking (cropping?... that sounds so weird) night. I did four pages in three and a half hours. I got stuck on my first two page spread and Lindsey and I had some serious catching up to. The hang out time is just as, if not more, important than the scrapbook progress. I've switched to Matt's Aunt Katherine's block template style and I'm loving it! No real need for embellishment, which I'm really bad at. The photos can speak for themselves, and all you have to really do is a title and a journal box. Here are the pages I did last night.
(Yes, I'm doing pages of October 2009 in March 2011. What's your point?)
Anyway, things are okay. Jonah is still coughing at night, and his breathing is not right during the day or night. He's now sleeping with a humidifier, a Vicks plug-in, Vicks on his feet with socks, and Triaminic in his system. I know it's not recommended for kids his age, but I gave him a small, safe dose and we are desperate. MUST PROTECT THE TRACHEA. I'm excited to see his new ENT on the 7th and discuss a plan for when this happens, seeing as how it happens every few weeks. I'm thinking an inhaler or breathing treatments may be involved. Poor buddy. I'm so afraid that the more it happens, the more permanent damage he may have. Praying that I'm wrong. I know it's in God's hands, but for goodness sakes, I need someone to be proactive about this. We are not in a good pattern.
Hope you all have a blessed weekend. It's going to be a busy week on Hope For Anton, so make sure you subscribe or put it in Google Reader or whatever it is you do, so you can keep up!
I took this video of Jonah's breathing last night.
Yeah, I know. I don't feel good about it. I sent it to Jonah's doctor and she said she wanted to see us again this morning. It seems to be all upper airway, which may mean that all this viral crud and coughing has either irritated and inflamed or blistered his trachea. We started him on steroids today, but if they don't work, he'll have to go see his ENT again and we'll have to have him scoped like we did two years ago. We're on day 11 of the coughing, mega congestion, throwing up most every meal, and not being able to breathe well at night. We're all over it.
So now we are just praying that the steroids work and we don't have to worry about it anymore (or at least not until his next cold... sigh).
On a happy note, Lauren from Knitting at Lunch donated some of her hand-knit fingerless gloves to auction off for Anton. I posted them over on the Hope for Anton blog and bidding is open NOW until Sunday night at 9pm. It'll be good practice for Jonah's EB Auction. :) They're super cute!
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.)
We've had a pretty good day, although Matt and I have been very busy with chores. They never seem to end. I "relaxed" tonight cutting elastic out of diapers while Matt gave Jonah his last bottle of the night. He’s just now finally fallen asleep. It's almost midnight... again. Last night he didn't fall asleep until after midnight, but he did sleep until a little after seven, so I'm okay with it. We did have to get up three or four times and give him a little butt pattin', but he went right back to sleep with very little effort. His breathing has seemed more labored today, which always makes me nervous. We had him scoped when he was a month and a half old, but haven't since. I think I'm going to set up a time with the ENT to have it done again. As much as I hate it and worry about it causing blistering, it's just too big of a risk not to check in on things once in a while. I just don't understand what causes his stridor. Is it just a "floppy airway," and if so, what does that even mean? I mean stridor is the sound produced when pushing air through a narrowed space... right? That doesn't sound good.
I guess I just keep waiting for the bottom to drop out. I mean, he's doing so well - thriving, gaining weight - right now, it's just blisters. And I just feel like I'm living in a perpetual state of waiting for the worst. I don't know that I'm negative (although Matt would probably say that I am), I just think we've experienced too much hurt for it to remain so stable. I can't seem to get my hopes up... as much as I want to. I have told several people that with each new milestone, it's bittersweet. On the one hand I'm happy and excited and thankful for (fill in the blank), but on the other, I try to embed it in my head, you know, just in case. Am I making sense? Like, for Father's Day, when I was signing Matt's card from Jonah, I thought, "What if this is the only Father's Day card Jonah ever gives?" And when he reached up for the first time and touched my face when I was kissing on his belly (I told you I love me some nudey-nudey time), I started crying - partly out of happiness, partly out of sadness that maybe we don't get a lifetime of this. And I kept thinking at the beach, "What if he's not here with us next year?" Isn't that crazy? I wish I could just accept now for now and stop thinking about the what ifs. Because, truth be told, I'm not sure I would survive it. What if, what if, what if. I honestly can't bear the weight of that thought. And especially on a day like today, when his stridor is worse. It just scares me so much. It's not the dressing changes or blisters or draining or cutting elastic out of diapers or clothes modifying or constant bandaging that get to me. It's the fear of the unknown. It's the weight of the What If. Sometimes I feel like I can't stand up under it.
I get scared that my faith won't stand losing another child. And then I beat myself up because he's right here in front of me - smiling, laughing, playing - and although I don't take a moment of it for granted... my mind still goes there. To the unimaginable. "Remember what his voice sounds like, Patrice." "Remember the face he makes when you first walk in the room." "Remember how he laughs at Matt laughing." "Remember how he looks at you with those eyes." "Remember that smile." "Remember how it feels when he touches you." "Remember how he smells." "DON'T FORGET."
Is it intuition or paranoia? Is it substantiated fear or complete craziness? Could I survive if he doesn't? Would I want to?
Do you see how it goes? I hate it. I just want to be here, in this moment, today. Loving Jonah, living, trusting God. I get so scared that as many promises as He's made to me and as much hope as He's given me, He has not guaranteed me that Jonah will have a long, full life. He has promised me that He will be with me every step of the way, no matter what. And in my head, I know it's true. But if I were being completely honest, when I'm overcome by the What If, I wonder if that will be enough.
And I would pray that He would be enough, but it's not even a prayer I'm willing to utter. Because that would mean Jonah is gone. And that's just not an option.
Man, pricing stuff for a yard sale is tough! I can't stop thinking about how much money I spent on the thing when I bought it... and my books, my precious books. So hard to let them go. I will take it very personally if people try to haggle with my books. Just rip out my soul why don't you?
Matt's gotten slightly carried away with the "what to sell" pile. I've already had to rescue our fire escape ladder, our screen insert for our storm door, and a memory card for my digital camera. We were going through our books the other night, and while I sorted through my books on the bed, Matt was sorting his on the floor and reorganizing the book shelf. I came up with a huge pile to get rid of, but when I handed him my keepers to put back on the shelf, he informed me there was no room. "Where are all the books you are getting rid of?" I asked. "I want to keep all mine," was the response. Um, no. Try again. So he was able to get a small stack together to sell and mine found a place on "his" shelf. And I love my Matt, God bless him, but he's really more of a Sports Illustrated kind of guy than a book man. I think he likes the idea of the books and wants to be a reader, but the odds that he'll actually read them are slim to none. But hey, they look really nice on the shelf, and what if Jonah wants to read them in fifteen years?
We are giving away our extra Bibles for free, but you'll have to pay $3.00 to get our PlayStation South Park game. How 'bout them apples?
I'm excited about pretending I don't speak Spanish, and then fluently bargaining the socks off any Spanish-speakers that come our way. I've been out of the Spanish loop for a while, so I'll be excited to practice.
Kathryn came and helped me price some stuff today, and we've both decided that we collectively suck at coming up with good prices. Our mottos are, "You couldn't get that for a dollar at The Dollar Store," and "I paid ____ for that," and "That would make a great _______ gift." Anyway, I think we're looking for very specific buyers. We've pretty much mapped out their whole life story and the exact reason and motive they will have in order to pay $15 for a pair of shoes. (Just kidding. Sort of.) Anyway, it's hard, but I know the price is really just a suggestion anyway. Let the haggling begin.
I about put a "Make an Offer" sticker on a travel bandaid case just to be funny, but wasn't sure people would get my humor. I also have this big wooden circle decorative thing on a stand, and I was going to write, "Why reinvent the wheel when you could buy this one for $10?" but again with the humor thing. Maybe you just had to be here. I'm funny in my head, at least.
We're going to have a table set up with Jonah's story and some magnets. I don't really care whether we sell any magnets or not, but I am excited about spreading the word about EB. I'm actually looking forward to people's questions. It's supposed to be in the mid 90's here on Saturday, so I don't think Jonah will be making an appearance, but the 7th grade girls at church did a nice trifold presentation for us to put up with the magnets. It's kind of a summary of what EB is on one poster, and then another one with clips from the blog and pictures that tell our family story. I want people to know Jonah and to know about EB whether they buy a magnet or not.
Jonah had an appointment today with the ENT, and he said everything looks really good (just one small place on his tongue that he could see - he didn't scope him again). He says the noisy breathing is probably just from excess secretions (something any baby could deal with), and the stridor when he's sleeping is probably just a floppy airway that he'll outgrow. He's still breathing well, never in distress, always has good coloring. I'm feeling better about things on that front, which is a huge praise. We'll see him again for a check-up in three months. I'm nervous about the GI doctor on Wed. I'm not really sure what they can do for Jonah without going down in there, but hopefully they can give us some feedback on the acid reflux stuff. He's eaten more today, but it's still a lot of fighting to get him to do it. I guess just meeting with the doctor who would make the g-tube decision if it ever came to that scares me. I don't even want that to be in the realm of possibility for Jonah, and it just makes it too real.
Ok, I better run. It's almost 1:00 am, and I'm sure Jonah will wake up as soon as my head hits the pillow. He has a sixth sense about these things. Have I mentioned that he sleeps with his eyes half open? Freaks me out. I guess he knows I'm always coming at his face with a needle as soon as he sacks out. I can't really blame him. But unfortunately, he also uses it offensively as well, making sure to wake up as soon as I shut my eyes or sit down with a plate of food. I know, baby, revenge is sweet. Revenge. Is. Sweet.
