Note to Self: Wear a Raincoat

Liam has had some trouble with eating. He is gaining plenty of weight and takes a bottle like a champ, but solid foods aren't going so well. Anything with chunks or that doesn't have the same flavor as vanilla yogurt or bananas will usually result in heavy gagging, choking, and a general feeling of impending death. We're working with him on it, but he seems to be winning the battle.

On top of that, he is incredibly stubbourn about not wanting to wear his hearing aids. I know this comes as a shock to hear that one of my precious angels might be stubbourn about anything. Rest assured, though, it's true. I'm sure I have no idea where any of them might have gotten that trait from. The problem with him refusing to wear his hearing aids is that we aren't stimulating his auditory brainstem, and speech will be more difficult for him later.

We had his annual ECI IFSP meeting this past week, and I was instructed that it's time to stop telling him no with a smile when he pulls off his aids. I'm supposed to show him my grumpy face and firmly say no while also signing it. Have you met this kid??!? He is just adorable and sweet and happy and loving, and someone is telling me to tell him no??? (Actually, I'm fine with that. Just ask Aiden. I say no all the time. According to him, in fact, I am the "meanest mom in the world".) It's the part where I have to show grumpiness that I hate. Poor kid.

Plus, I'm supposed to start introducing more flavors. The best suggestion is to go ahead and dip his binky in a new flavor and offer it that way. Okay, I guess that seems reasonable enough, right?

Friday, I decided to get a babysitter so Byron could surprise me by taking me out on a date. (Yes, you read that right. Sometimes a girl has to take matters into her own hands if she wants to be taken out). Since Liam has some issues and there are five kids, we opted to bring him with us. I decided that this would be a great chance to work on requiring the aids and offering him new flavors.

We went to the Olive Garden so we could use Byron's gift card from Christmas. As soon as we sat at the table, Liam went for his hearing aids. He was determined NOT to wear those suckers no matter what. Three times in a row he did it, and three times in a row I showed him no with my very firm face and the sign while also taking his hand away from his ears. The result? A broken heart!!! Poor Liam's eyes just filled with tears and a big frown came over his face. It was like I'd just told him there is no Santa Clause. Finally, I just did him a favor and took the hearing aids out for hm so they could be put in a safe place.

Then the food came out. Byron loves to order extra alfredo dipping sauce for the bread sticks. Suddenly I had a really bright idea!!! I would dip Liam's binky in the alfredo sauce. What could go wrong there? I fed him a full container of his yogurt, and then dipped the binky in the sauce. I was just sure this was going to be my most genius idea yet...right up there with taking all five kids to Target by myself just for fun.

Almost as quickly as I put the binky in his mouth the gagging began, then some sputtering and then tears coming down his cheeks as he tried for all he was worth to hold his beloved yogurt with him. And then it happened. Picture a scene from The Exorcist. I had no idea that one little tongue full of alfredo sauce could elicit such a response, but I was wearing the proof that it was indeed possible.

The moral of the story? Next time I listen to and fullow through with instructions from ECI, I should be fully prepared to feel like an ogre...and I should at the very least wear a raincoat.

Busy, Busy, Busy

Who knew being the mother of five practically perfect in every way children could keep a person so busy? I know. Shocking. And, oh so shameful that I haven't had a chance to update my beloved blog in so long. Never fear, my faithful readers, (okay, so I know it's pretty much just me, but humor me). I am still here and am making a promise here and now never to neglect my blog again. Today's post won't include photos, but rest assured that they're coming.

Pretty Turned THREE
I don't even know how it's possible that she's gotten so big. But, according to the calendar, it's true. She's three now. We weren't going to tell her it was her birthday since her party isn't until next month, (she's sharing it with one of her favorite friends. Yes, we're cheap. No, we don't care how cheap we are.) but she found out. And she was so adorably excited to learn that it was her birthday. She ran around singing "Happly Buhday to meeeeeee" and explained that she wanted a pink cake and pink drinks and pink plates. Not a horrible order, right?

How do you say know to someone so cute with a request as simple as that one? You don't. Our friend, Samantha, made her a lovely barbie cake with a pink dress lovingly decorated with help from her mom and another friend (thanks, Reece!). I got some cheap pink plates, pink napkins, pink gift bags, pink princess presents, and pulled out the presents we'd been saving for her. We called one or two neighbor friends and Voila! Instant pink party. Not too shabby.

I Got a Handicapped Parking Pass
I have to thank everyone for the prayers and outpouring of love as we worked with Little Guy and his health issues. It was a scary time for us, but the love we felt made it completely bearable. He's home now with oxygen at all times. At home it's fairly easy. Well, mostly. The cat likes to chase his tubing. Figures. Going out, though, is another story. Dragging the oxygen, Little Guy, the other kids, the diaper bag, and the kitchen sink (okay, so I leave that at home, but it feels like I drag it, too) is a lot of work. The tank is usually the big one that I have to take depending on how long we're gone. And, when he starts walking, going too far will leave him fairly winded. So, I got a handicapped licence plate. I only use the privileges when Little Guy is actually with me, but I will say it's helped quite a bit.

A Funny From the Beast
So, the Beast is apparently actually learning something at church. And here I thought he just went to drive his teachers nuts. Nope. He's gaining knowledge. He loves to put things inside of bags, and I don't tend to pay attention to what junk he's putting in there. Well, that's not totally true. If a butcher knife, matches, or a little brother turns up missing, I'll check the Beast's bag. He took his bag to daycare with him one day and I'm told held an entire Sunday school lesson using the Book of Mormon he'd taken with him. From what I'm told, he made everyone come sit in a circle and listen to him. Silly kid. Think Ms. Buffy will convert? Ummm, doubtful, but good effort, Beast.

Yesterday, we had the following funny happen with him after I saw Marlene coming up the walk:
Me: Pretty, go see who's at the door!
Pretty: Okay, who is it?
Beast: (fully expecting me to answer in the affirmative) Is it Jesus?!?!?
When he saw that it was Marlene, he hung his head in disappointment and left the room. Weirdo. But I do love him, and I have to say that's pretty great faith to think that Jesus might show up at your front door at any second.

That's All She Wrote
I'm sure there's more fun and excitement that I'm not writing about today. The kids are awfully quiet in the other room, though. That either means they're dead or they're plotting to take over the world. Either way, I should probably check on them. Stay tuned until next time, my friends. There is always more to come...

No New Answers, but So Many Blessings

This morning, I found myself in a puddle of tears sobbing on the phone to my dear friend, Anne Marie. After almost three long weeks, we are still no closer to finding answers we need or going home. This baby has been poked and prodded and tested and tortured and given medications "just to try", and so much more. We've had to move rooms to accomodate other children with contagious diseases, have had part of our house flood, have been apart as a family for weeks now, and...well, I know there's more. I just can't think of it right now.

So, there I was just sobbing and just wanting to beg Anne Marie to make it all go away (as if she could just wave a magic wand and make that happen, right?). I haven't slept in a looooooong time, and I think my thinking might be getting a little foggy at this point. (Thank goodness for happy pills!) I'm frustrated and maybe just a little bit frightened. I miss my other children horribly and The King tremendously. He is my best friend and the shoulder I cry on in times of trial. And yet, we're so far apart. And I hate it.

Anne Marie promised me that, through Heavenly Father, amazing things would come of horrible trials. I told her she'd dang well better be right or the Lord would be getting a strongly worded letter from me. She's not typically wrong, so the odds were good that positive things would come to pass.Let me just tell you about the incredible blessings that have come because of Little Guy's hospitalization. I can't begin to name them all because I'm not sure I've even recognized all of them. Honestly, I'm not sure that I ever will. Our church family has rallied in ways I can't begin to describe. Women have taken all of our laundry home to wash, dry, fold, and return it. My kitchen has been deep cleaned and reorganized. My children's rooms have been top to bottom cleaned. The flooded parts of my home have been cleaned and repaired. Closets have been organized. My master bathroom has been completely made over. Women have remembered little things I've said in the past and used those memories to make my home into something I can love and enjoy. My children have been cared for lovingly by people who have really no time to do it, but love our family so much that they'd give of themselves for us. Food has been provided. Love and support has been endless. I don't know of all the people who have been working tirelessly on behalf of my family, but I know they're there. And I know they're tired. And I'm grateful. Words won't ever begin to express my gratitude.

Today I got a visit from one of the girls I taught when she was a youth and young adult. She lives nearby and just knew I needed a visit. Brooke (that's her name) brought me a gossip magazine and chocolate. Nothing could have been more perfect. Nothing.

And then there's the MOFia. Some of you may know that I'm a proud member of an online message board for LDS moms. It's a private board full of women who all know at least one other person in real life (in other words there are no dirty old men). We are a tight knit group of about 130 women who are always there for each other. I've never met anything like it. It's like the perfect model of an LDS Relief Society.Taffi is a member of the MOFia. She came just a for a visit just days before Little Guy was readmitted to the hospital. She has extended her trip four times since she got here and given of her time and resources. She has stayed up through the night on nights that I could just not stay awake a minute longer. She has endured hosptial food that requires immodium and pepto to digest. (Not even kidding, people! Don't eat the hospital food). And she has done it freely and without any expectations. She's leaving Friday, and I was preparing to take the reigns here at the hospital on my own.

When Taffi came back from visiting with Angela, she informed me that another MOFia member, Lisa, would be arriving Friday evening for another week or so to help out. Her husband heard of the situation and they wanted to help. I can't begin to repay her or even promise her a fun time. And she knows about the food here, too. (Maybe she likes living on the edge?) She just chose to give of herself for no other reason than she could. And there is such a need. I can't even begin to explain my level of gratitude.So, here I sit at the end of a day that started with tears and heartache and fear. I'm looking at the bigger picture and realizing how blessed we are. While our baby is no closer to finding answers to explain his breathing troubles and our finances are no longer what we'd planned on them being and our family is not currently residing in the same place, we are blessed. We are so very blessed. And loved.

Anne Marie challenged me to pray. Any prayer. Just prayer out loud. I'll be honest and admit that I've not heard myself pray out loud alone in years. I've always felt I sounded a little "weird" praying out loud. It's going to take more time to get to where I pray out loud. But the prayer in my heart tonight is one of hope and thanks.

Not Much New News to Share

We've done an EEG for 48 hours. I don't know what the results are of those. The pulminology team has tried treating with steroids, which would work if it was bronchiolitis or asthma. The steroids didn't work. We do know there is a distinct thickening of the bronchial walls. We don't know why yet. We also know his retractions are getting deeper and deeper, and it's getting harder for him to breathe. Poor Little Guy. Tomorrow, Little Guy will have another bronchoscopy where they'll put a scope down his throat and look at those walls as well as his lungs.

So, we wait. Dr's say best case scenerio is that we're done here in a week. Worst is several more week. I'm hoping for the best but trying to prepare for the worst.

The Good News and the Bad News

I'll start with the good news. That is that prayer works. We have absolutely felt the prayers of everyone today. Liam went in for his follow-up MRI, and what they thought was a tumor is definately there and is a mass. But it is NOT a tumor. It is not cancerous. It does not need to be removed. It is called a hamar toma, and is like a "skin tag" on the brain. We will be watching with MRI tests every three months. But, for now, it's harmless.

The bad news is that the mass does NOT explain his hypoxia and rapid breathing. So, more tests are needed and we're looking at about another week or so (at least) before we get to go home. I will, of course, keep everyone posted.

I don't even know where to begin on the thank you's. There are just too many to count, and we're still only just beginning.

Grand Central Station, How May I Help You?

Little Guy is back in the hospital for some breathing issues. It hasn't been fun. This is also my friend, Taffi's, vacation time. She's spent pretty much her whole vacation here in a room with Little Guy and me.

I thought it would be fun to document all the fun that she's had since she's been here. Heaven forbid we ever forget all that's gone on in the last ten days. Ten days! That's it. All of the following things have happened in just ten short days.

1. Five pounds of sugar, seven eggs, half of my spices, and a package of kool-aid mix were all mixed together in the Beast's bed and in the back of his closet.
2. Number One brought her breakfast in bed.
3. We broke the Sabbath to buy Snort an enema. Trust me when I tell you that he really did need it.
4. Taffi got to sit with the Beast in his new summer school classes so I could take three other kids to a dr. appt.
5. Taffi woke up to discover that her roommate (Snort) prefers to sleep in the nude. And he likes to pee the bed.
6. Taffi watched the kids so I could take the Beast to summer school. While she was there, the neighbor's very large dog dug a hole under the fence and came bounding in the back door. Two days in a row.
7. We went to the laundromat and did 35 loads of laundry. Seriously. I have photos to prove it.
8. We grocery shopped with all five children.
9. I set up a massage for Taffi and a luncheon with all the ladies at church so she could get to know them. Instead of going to those, she was with me following an ambulance to Children's so Little Guy could get some oxygen.
10. The chair she got to sleep in was broken, so she slept in the fetal position for a couple of nights until a kind soul brought her a sleeping bag.
11. The King woke up to discover that a pipe exploded and we had a flood in our room and the Beast's room.
12. A hundred different doctors gave us a hundred different explainations as to what is going on with Little Guy. None of them were right.
13. The hospital food gave me the hershey squirts. It made Taffi throw up. We're ordering out now.
14. The Beast's ride home from school didn't work out so well, and he was stranded there 45 minutes after it was all over.
15. Snort had to go stay at Grandma Kelly's because he misses his mommy too much.
16. Pretty tried to have a sleep-over with her friend, Kristen, but missed her Daddy too much. So, she went home.
17. Angela found matches and the butcher knife in the Beast's room. Don't even ask what he planned to do with those. Weird kid.
18. Snort washed some clothes in the toilet. Someone hadn't flushed it before he put the clothes in the toilet. Nice.
19. Pretty put nail polish all over herself, Snort, and the bathroom.
20. Someone (we're pretty sure it was Pretty) put my lipstick all over the dog's backside. I think the King threw the lipstick away for me. At least I hope he did.
21. The King didn't know where the kids' clothes were, so he just bought them whole new sets of clothes.
22. The hospital dryer didn't work, so we had to hang our wet clothes in the shower to dry. We look like white trash.
23. We've nicknamed the pulmonologist Dr. McDreamy. If you met him, you'd say the same.
24. There is a pair of doves that likes mating outside of our window every single morning. One actually crashed into our window once. Apparently she was happy with her husband dove. Since they only do it in the morning, we can only assume they're morning doves.
26. Taffi's flight coming here was about 6 hours late and actually got in at about 1am. Then she got stuck here with me. I went to change her flight home so she could stay longer, and it cost more than the original ticket. So, we just bought a whole new flight thinking she'd get time to play before she leaves. From the sound of things, she'll be going from the hospital to the airport anyway.
27. I think that's it, but I know there's more that people just haven't told me about for fear that my head my explode.

Honestly, if I didn't know better, I'd think I was working for Grand Central Station.

Bonded

The King and I, as well as anyone else who has been getting to know my children, have been watching Snort and Little Guy with great fascination. They have a bond like no two people I've ever seen. Snort is somehow drawn to Little Guy, and just can't bear to be apart from him. We can't explain it. It's as if they remember one another from Heaven before they came to Earth. Little Guy is calm and serene when Snort is near him, and Snort finds within himself a gentle love for Little Guy.

Snort finds any and every opportunity to climb up to Little Guy and repeat his name over and over and over. If Little Guy is crying, Snort gently repeats his name until I notice and attend to Little Guy's needs. He genuinely worries for him. As soon as he can get close enough, he opens the palm of his hand and strokes Little Guy's cheeks. He looks him in his eyes and it's like they are communicating with each other in a language only the two of them can understand. Quite often, we see what is shown here; Snort leaning over to hug and kiss Little Guy.

Even as I write this, I find myself a little bit choked up. It's a real testimony to me of the magnitude of these spirits trapped in such tiny bodies. Their bond has shown me that love is innate and true and genuine. And, in its purest form, love is healing. These boys have vastly different needs and yet they're both so much the same. Sometimes I think they're here for each other more than as gifts for the King and me. They are each other's greatest blessing.

Brotherly Love

Snort loves to go up to his baby brother and say his name over and over and over and over and...well, you get the idea. It's pretty cute because he's so enthusiastic about it. He gently strokes his head and gives love. He does it repeatedly several times a day. I'm pretty sure he's just buttering Little Guy up to steal his binky, which also happens repeatedly several times a day.