Communities

Did you know that this week is Congenital Heart Defect Awareness week?  Well, it is. 
I sit here and think about how I became a part of this community.  It's a great community of people, just not one I ever thought, in a million years, I'd be part of.  And yet, here we are.  We've been here for eight years.  And we've survived eight years! 
In the middle of the week that so many CHD parents are so passionate about, we find ourselves thrust, head first, with no warning, into a different community. 
One that, right now, seems just as frightening.
Another chronic illness community.
Another community I never, in a million years, thought we would join.
A couple months ago, Emily started wetting the bed.  We weren't sure why, but finally bought her some Goodnites because she was wetting the bed nightly. 
Then, she started not making it to the toilet in time.  I thought she was just being totally distracted for whatever reason.
Over the last couple weeks, it has gotten increasingly worse.  To the point of needing to go to the bathroom about every half an hour. 
Of course, the first assumption is a UTI, but she said nothing hurt.  And while she had the urgency issue, she was peeing a LOT. 
Yesterday, we hit a new low.  She was going potty all day long. 
On Monday, I had made her an appointment with the pediatrician, but they couldn't see her until Thursday.
Last night, she was up all night, needing to go to the bathroom.  Finally, around 5 am, she fell asleep and just peed in her goodnite.  By 8 am her goodnite was completely soaked through and the bed was soaked as well.
I took her to the ER, because I knew something was very wrong.  They took us right back.  The first thing they did was test her blood sugar.  She hadn't eaten since last night, and her sugar was 298. 
After running several more tests, they told us Emily has Type 1 Diabetes.
I think I'm in shock.  I know nothing about diabetes.  Nothing.   It all seems so scary right now.  I know we will learn to live with this, but today has been rough.  So many finger sticks and blood draws and IVs and insulin shots.  By the time I left tonight (Matt is staying the night with her) she was screaming bloody murder when they gave her her shots.  She is so scared, and this must all be so confusing to her.  I want to take it all away from her, but as we know, I can't.
And so I sit here, wondering what lesson God needs us to learn.  What we are missing.  Wondering when we will get it right!
And I also am wondering what the diabetes community is like.  I guess I'll find out soon enough.

Sweet Emily with her new diabetes bear, Rufus.  He has owwies on all his injection sites.

She was soo happy to see Natalie.  All day she kept saying, "I NEED to see my sister"

Did I happen to mention...

Emily has a broken elbow. Did you know this? Did I ever tell my dear readers this? Well, it's true. A month ago, she fell while playing with the kids at play practice. She immediately complained about her elbow. We thought she would go to sleep and wake up having forgotten about it. Instead, the next morning, she sat up, and screamed, "MY ELBOW!!" Off to the ER it was. All they could determine was that she had an effusion, and they suspected a radial head fracture. She was splinted for two weeks. After the two weeks, we headed back. They x-rayed her and said her elbow looked good, but that since she was still having pain, they decided to be conservative in their treatment. We were told two weeks in a cast, and then she would be good to go.
The two weeks was up today. We went. They took off her cast. They did x-rays. The next thing I knew, the doctor was telling us that now a fracture was definitely showing up. She is back in a cast for two more weeks.
This seems to be exactly what I've read about, regarding radial head fractures. For some reason, x-rays don't reveal them for several weeks.
I am so glad they decided to treat it as broken a month ago!
We are headed to Chuck E Cheese tonight. We had told her we could go swimming today. Poor thing.

We told her we were going swimming because last weekend my dad was in town. He started the older boys on scuba certification. So they spent the weekend in his hotel pool. The girls and I spent it at home. She so wanted to swim.

When it finally comes off..we will have to go swimming.

Did I also neglect to mention that Dillon broke his finger? It's so hard to recall what I wrote here and what I wrote on Facebook.

About a week before Emily broke her elbow, Collin fell off the couch. His knee landed on Dillon's finger. Breaking the tip of it.

Good grief, who knew a broken finger could be such an ordeal! First, the ER just gave us a splint. Said it was just cracked a bit. After two weeks, we went to the orthopaedist who said it was broken, at the growth plate. The ER didn't reset it or anything, so his finger has a permanent bend to it. Nothing major.

However, when I took Emily in today, he had a check up also. The doctor squeezed it, as usual, and he said it hurt. This far out, it shouldn't hurt. It is also pretty swollen. So, they ordered blood work to check for infection. The doc just called me and said it was all negative, so it's a skin infection. And now he has to take antibiotics for ten days.

All for a broken finger!!! Goodness gracious!

I hope we are nearing the end of this train. It feels like we've been living at the orthopaedics clinic. I'm ready to get on with summer!

It is highly possible that I am the worst mother alive

I am sitting in bed, listening to Emily scream her head off.
She is with Matt, but is throwing a huge, ginormous fit.
I honestly don't know what to do.
You see, she still nurses. Yes, yes, I do know she will be 3 in March. And yes, I know there is going to be a new baby in a matter of weeks. I know all of this.
To wean or not to wean has been the ongoing question here.
On the one hand it would be really great for her to be weaned before the baby is born.
On the other hand, I do not want her to feel rejected by me. And I really don't want her to hate Natalie.
It is such a hard, hard decision. She really enjoys nursing. And I really do not at this point.
So tonight, I let her nurse to sleep, which is about the only time she nurses. But she woke up after about an hour. And not just a little. She must have dreamt something bad because she woke up nearly screaming. So, I scooped her up, and naturally, she wanted to nurse. Normally, she will latch on and nurse for just a few minutes and I can tell her that's enough and she's fine with that. Not tonight though. She just wanted to nurse and nurse. And I just wanted to crawl out of my skin. I'm reading a book about tandem nursing, and it turns out this is a totally normal feeling when you are nursing while pregnant.
I told her that was enough, and she lost it. And she's been screaming ever since. And it's breaking my heart. I'm not sure what we are trying to accomplish here. All I know is I don't want to nurse her right now.
How selfish. She needs comfort and all I care about is my own comfort.
See. I told you..worst mother alive.
This all sucks. Really, really bad. My mother would tell me that she has told me all along to wean her, we have just really struggled with if that was the best thing for her. It's funny, because my mom likes to spout off about me weaning her, she has no idea what we have been going through regarding the whole weaning issue. It isn't one we are taking lightly, it has been a source of major stress for us for some time. It's hard to know what the right decisions are when it comes to our babies!
I need a fairy godmother to come wave a wand and make this all better. *sigh*

A little bit of this and that

This has been a great week.
The weather has been a bit cooler (OK the 80s, but that's cool for here), and we are finally being blessed with rain. Oh, sweet glorious rain. I love the rain.
I love fall. So much. And if I keep the doors closed, I can pretend that it is fall. But then, I open the doors, and it's hot, and I am reminded once again that things are going to get green instead of orange and red. And that there won't be any snow this winter. It will just be like every other day. So disappointing.
I need to buy some mums, but I haven't seen any in the stores yet. That makes me feel a bit more fallish.
Oh well. Time is flying. Before I know it, I will have a sweet little newborn to snuggle with. And it's a good thing too, since Emily has suddenly decided she is a total daddy's girl. When he's around I'm worthless. Unless, of course, we happen to be at church or somewhere I want to be alone at, then I'm all that will do. Figures. It's alright though, because she is growing up so quickly, and soon she'll want nothing to do with either of us. She has turned into this sweet, silly, HAPPY girl. Given her babyhood, this is shocking to us, almost every single day. I was just telling Matt the other day that I often look at my kids and thank God that we didn't stop after just two. We would be missing out on so much! They are all such a blessing in their own little ways.
OK, the banana bread is baking, the big kids are running lines, and the little three are playing outside. I'm going to kick my feet up for a bit and just relax.

My bad

My grandma reminded me last night that I hadn't updated about Emily. I'm so sorry. Sometimes you just start a new regimen and forget that you told the world you would keep them informed!
So without further ado...the results of her scoping were all perfectly normal.
Which is good, but still no answers.
The doc changed her meds from an acid neutralizer to Reglan, which will help her tummy empty faster and I guess therefore preventing excess acid??
She started that on Tuesday night. She takes it three times a day, and I told Matt this morning that she actually slept pretty good last night. Whether it's a coincidence remains to be seen.
I do hope it helps her and the poor thing can finally be pain free.

One of these girls

ONE OF THESE GIRLS



IS NOT LIKE THE OTHERS



ONE OF THESE GIRLS



JUST DOESN'T BELONG



OR



DOES SHE??!!



I think we'll be paying better attention to where the markers are!

How sweet it is

A couple weeks ago, Matt preached at a neighboring church.
The church is tiny, and doesn't have Cradle Roll.
The boys all went to Sabbath School and Emmie and I stayed in the sanctuary with Matt while he prepared.
She was so silly. She would literally strike a pose, wait for me to take her picture, then move on to another pose.
I truly have no idea how it is that I have such a darling daughter.



I wish this picture had turned out a bit better.



"hmmmmm, I sure wish there was money in that plate!"



Em and Matt



I think this picture should be in one of those emails that goes like crazy around the net. Have you ever seen anything so precious?



Matt...concentrating..



OK, I stopped moving, now take my picture!



What a cheeky girl!



Taking a break from all that posing.



Look at my pretty dress!

My Shadow

Last Sunday, Em and I ran to Costco together.
On the way, I stopped at Starbucks and treated myself to a frappucino and Em to a chocolate milk.
We went into Costco with our drinks in hand, and we shopped.
She has gotten so independent and wants to walk with us instead of ride. She also enjoys helping us push the cart.
On our way out, she was feeling around at my pockets. I asked if she wanted the keys. She said she did. Then she went for my handbag. Then her drink. She had me put her sunglasses on next.
Walking to the van she had my handbag hanging from her left forearm, with the keys in her left hand. Held ready to push the 'unlock' button. In her right hand, she sported the chocolate milk.
I looked down and saw a miniature version of me. How I wish I had a camera.
I hope I am a good enough example to her in the coming years that when she copies me, she is copying nothing but good.
God is good, and I know it's possible with His help to model great behaviour to these kids He has so graciously given us to raise!

Going out on a limb

Emily had her dreaded VCUG. I talked about this earlier. The test where they cath her and fill her bladder, inject dye, and check for kidney reflux.
Matt checked the results at work today and it says everything was normal.
PRAISE THE LORD!
I really didn't think she would outgrow it that quickly, but she did!
Have to get the official word from the doc, but it looks like the daily antibiotics will come to an end! YAY!!!

Yesterday

As you all know, yesterday Emily had an upper GI. What you may not know is that she is still nursing. She couldn't eat or drink after 7 am. If you've ever nursed a toddler, you know that the last times they give up are at night and first thing in the morning. I was so hoping she would sleep late and it wouldn't be an issue. We weren't so lucky. She woke right around 7. And she cried, and was so upset that she couldn't have her morning comfort.
By 8, I didn't know what to do to distract her, so knew we needed to get in the car and just drive. So, we did.
We made it down the road when Matthew announced that his eye was hurting. His good eye. He said it felt like it was exploding. Then he told me it felt like something was inside it, eating it. Lovely.
In case you don't know, Matthew has glaucoma in the other eye, and just has funky eye problems that pop up and surprise us.
So, we turned around and went home to get him some Tylenol. When I came back to the van, I thought he had gotten out, because I couldn't see him. He was curled up in pain on the passenger seat. I had never seen him in pain like this from his eyes.
Matt had gone into work, but finished up and came home and came with us to the hospital.
On our way there, we called the ophthalmologist to see if Matthew needed to be seen. Of course, he said yes.
Once we got to the hospital, I took Emmie, and Matt took Matthew and the boys to the ophthalmologist. Thankfully, they are about two doors down the hallway from each other.
I was nervous about the upper GI. But Emily did great. She was frozen and didn't budge the entire time. I had told her she was going to take some medicine. She opened her little mouth like a bird and drank that nasty barium.
All we found out is that yes she is refluxing. We already knew that. The pediatrician is concerned about a hernia being the cause of the reflux. So, I think she'll be scoped in the near future. Just have to wait and see.
As for Matthew, the pain went away, and they said it was probably an ocular migraine. But the pressure was way up in the bad eye. We stayed there for hours while they gave him drop after drop to try to get the pressure down. They never did get it down past 32. He'll see his glaucoma doc in two weeks. For now, though, the pain is gone.
Later I had the privilege of getting my temporary crown put in. It was horrible. I hate the dentist and am always in such pain afterwards. I just wanted to curl into a ball last night and run away from the pain.
Today is a new day, and it's sore, but nothing like yesterday.
I feel totally overwhelmed. We still have the science fair on Friday, the concert on Sunday, Matt is preaching in a different church on Saturday, and the dreaded VCUG is tomorrow. What I really want to do is clean out my house. Shovel out all the clutter. But that takes time, and I don't have a lot of that right now!

This is not good

Matt is in Ohio for the week. He will return home late Friday night, be home Saturday, and fly out to Arizona on Sunday. Bleh.
I'm exhausted. Just wiped out. I tell you, this is not a good way to start out single motherhood.
And just in case you were keeping track, my sweet little baby will be TWO on March 3. We will have a little family celebration on Saturday when Matt is home. I have no idea what to get for the little darling, and I'm sad there are no friends to share a party with, but it's ok. We'll have our own little shin dig....as long as I don't die from exhaustion first!

Crazy Busy

It's been hard to sit down long enough to write an entry. I'm not sure I'll get through this one either, but I'll try.
School has us very, very busy. We are starting some new things. Matthew and Dillon are participating in the Science Fair this year, so we've been brainstorming. My sister recommended growing bacteria, of course Dillon jumped on that idea. So he will be doing a bacterial experiment of some sort. And Matthew will be growing plants using different types of lights. I'm excited that they are getting this opportunity. I never participated in a science fair, and honestly don't ever remember our school holding one.
We are also taking a stab at lapbooking.

Lapbooking can be done by any learner-- from preschoolers to adults. With this educational method, you make mini-books covering details that you've studied. After making a variety of mini-books about a larger topic, all the books are put together in a large folder. The finished product is called a lapbook because it's large and covers your lap.

The completed lapbook will serve as a review tool as your children refer to it over and over again. And if you have to keep a homeschool portfolio to document learning each year, lapbooks can be a very impressive addition- from http://www.squidoo.com/lapbooking

I've been wanting to try this for years, but it always seemed like so much work. It is not at all. It's fun! I decided that we would learn about Disney World before our trip. So in addition to our regular schooling, we are doing a study of Disneyland (since it was the original). The kids are having a blast with it, and when we are done, I'll post pictures.

The Pathfinders hosted a valentine's banquet at church to help them raise money for Osh Kosh. They raised about $500, but it was an awful lot of work. Matthew told us that night that he was never going to be a pathfinder director because it was too much work. Poor kid!

Emily is doing better after her last med raise. I think, though, that it won't be too awful long before we have to go up again. I cannot believe that her birthday is right around the corner. March 3 will be here soon, and she'll be 2 years old. How did that happen? She has renewed our love for Sandra Boynton books, especially 'Blue Hat, Green Hat'. They have to be the best books ever written. We've also discovered that she is awfully cute in orange! Who wouldda thunk??

Our healthy living group at church is trucking along, and I'm down 9 pounds. It seems to be going soooo slow. It's frustrating. But with the support of the ladies at church, I'm not giving up!

And finally, please keep Zachy in your prayers. He is back to tiring out easily. I hate that. I assume it will be another adjustment to his pacemaker. I just wonder if it will be a life long thing, this tiredness. He is supposed to see his doctor in May, but I'm going to try to get the appointment in April instead since we will be gone most of May.

Phew! That was long, and it took me a very long time to write it. I had to read books and play a game of Candyland during the writing of this post. Thanks for hanging out with me for this long!

Just a quick update on Em

For those of you who have been asking, Emily is still struggling.
She went back to the doc yesterday who increased her reflux meds. The doctor is actually doing a gastro rotation right now and talked with the docs there about Emily. They said to increase her meds two more times, and if no improvement to refer her to them so they can scope her.
I really don't want to have to go down the scoping path, so we are praying that the meds will help.
Part of me thinks maybe she is just a difficult child, but then I remember December and part of November and January. She was so pleasant, and happy. It is really easy to get into the thinking that this has always been and probably always will be, because we are talking one and a half months out of 23 that she has been ok.
So there you go, update on Miss Emily.

I need more..

hours in the day? days in the week? Something. I need more time. Don't we all though?
This week I dropped my Bible study. I just couldn't do it anymore. I have something going on almost every night of the week, and it was just too much.
But now, I want to add weight watchers. What a foolish idea. If I don't have time for Bible study, how will I have time for WW? Here's my plan. There is a meeting on Tuesday at 6. I have another meeting at church at 7. Maybe I can just do both, and not see Matt much that night. Ugh, I just don't know.
School is going really, really well these days. It is taking us a lot longer than it used to, but it's going well. We've decided to go four months before taking a break, instead of three. Because our first month back would be May, and we'll be gone for two weeks in May.
Once again, I feel like I have much rumbling around in my brain, but just not getting onto the screen well. Oh well.
Emily may have turned another corner. She has had a hard time, which has been hard on me. She was crying all the time again, and that just gets really, really tiring. But they doubled her reflux meds and she finally seems to be doing better. It's only been two days so I hope I'm not jumping the gun. Time will tell!
Thanks for hanging in with me when I disappear for these long periods, I'm just running out of time!

Oh the fun we have!

We are home safely. We had a totally uneventful drive. And a good vacation.
We spent the first half in a town just west of Dallas where we did lots of fun Christmasy stuff and spent lots of time in the pool and hot tub. Oh how I miss the hot tub! I think I may need one!
The second half was spent in Missouri with Matt's brother and sister-in-law and their kids. Good times were had by all. The adventure there happened when their heat went out. It was out nearly the entire time we were there. Gina blames me, rightfully so I suppose. Before going to visit she had told me it was very cold in Missouri. I joked about us not being able to go up there, and asked her how their heat was. She told me it was just fine, and to quit being such a wuss. We get there, the heat goes out. Clearly, my fault. Although, perhaps she was just trying to toughen me up, and perhaps the heat wasn't out at all. It was one big joke. OK, not really, I saw the heating men there with my own two eyes, so it must have been legit.
We baked lots of cookies and ate way too much, but it was fun.
We arrived home on Friday night. That's when the adventure began!
The kids had slept a lot on the way home, so of course they were all wide awake when we got home.
Because everyone went to bed so late, we were late getting to church. It was my week to work in the kitchen, and Matt was leading the song service. He had asked Matthew to watch Emmie while we did our duties. Emmie was spinning in a chair and fell off and hit her face on a metal folding chair. She knocked two of her capped teeth out of alignment. There was blood everywhere and she was screaming bloody murder. We raced home to call the dentist. After talking with her, we decided there wasn't anything more that could be done, but that we would go in for x-rays today.
She has swelled a bit and I noticed her nose was out of alignment now.
The x-rays revealed that her root was fractured and also the bone that holds the teeth has a hairline fracture in it. Nothing can be done, and it's just a waiting game to see if the teeth die. If they die they will have to pull them, so we are praying hard that they stay alive.
Today the teeth are still loose, so we know she hit pretty hard. Thankfully though, she has caps. They told me if the caps weren't there her teeth would have broken right off at the gums.
I think I have been more worried about this than I realized because tonight I am absolutely beat. Not sleepy, just physically exhausted.
Collin had an ophthalmology appointment today and they discovered he is seeing 20/30 corrected now. So that is great. The other doc had said his eyes had gotten worse, but today they said no. YIPPEE!!
Tomorrow night we are having an agape feast at church and I'm apparently in charge of it. Didn't realize that till today, so it's been last minute rushing about to get things done.
I think I need another vacation!!

Something wonderful happened last week.

I have no idea what it was, but something happened.
Could it be a new and budding (finally) vocabulary? I don't know, but Emmie went from being so very whiney and demanding to being a sweet, silly, happy girl.
It is so wierd.
She has been sooo difficult all her life, and now just suddenly, she seems content.
I thought maybe it was all the company and the non stop attention, but even with them gone she is so sweet.
She's using new words all the time, and I think that helps a lot. But it seems like so much more than that.
She's just content. And it is so very, very wonderful!

Does it get any better??

I have an entry in my head that I need to write..all about how Emmie is taking Prevacid now, and is a different child. I wrote it last week, but blogger ate it. I wrote about how I could hear the angels singing with me..HALLELUIA. Do you hear it?
It turns out that Emmie is silly, and loving, and just a great baby. For 18 months, we've struggled with her. It kills me to think that she was just hurting.
Right now, I'm sitting here, she is beside m eon her own chair. Everytime she looks at me, if I'm not looking at her she says, "mama" then I look, and she blows me a kiss.
How did we get so blessed??

Pepto Chango

So I'm still waiting to hear from Emmie's pediatrician about the reflux.
I'll tell you, that looking at her through reflux eyes, I can totally see a pattern to her fussiness. Nighttime is worst, I'm assuming because she actually eats dinner. She barely eats the rest of the day.
So, last night, while she was screaming and screaming and screaming and writhing and screaming we gave her a children's pepto. Even though, technically, she's too young. But, we were desperate.
Within 5 minutes she had completely relaxed and conked out.
I feel like such a bad bad mom. How could we not have caught this before??

Pictures

Pictures of Emmie's surgery. And the night before.
I'm no longer doing slide shows because my dear friend lives in the boonies and doesn't have high speed internet. So, for you Theresa..normal pictures!




It was 5:30 am, and she was so sleepy. She loves her baby.



Not too tired to play games though!



All dressed up and ready to go.



Unfortunately, it was a long wait, with lots of time to kill.



When it was about time to go, they gave her some versed, nasally. Now, versed is a wonderful thing, but it doesn't matter how it is administered (nasally or orally)it is icky. It tastes bad, so it's tough to get babies to drink it. But who really likes the feeling of fluid being pushed up their nose?
This picture was taken when the versed was starting to work. Not enough for her to be drunk yet, but she had been crying a lot before this. She was settling down at this point. Please don't pay any attention to how tired I look here.



Relaxing, almost drunk. If you look closely, you can see my watery eyes. Let me take this opportunity to tell you something. It does not matter how minor a procedure is, it is still very difficult to think of your child being sedated and undergoing surgery. You would think, after open heart surgery, I would be able to say, "hey no big deal, it's just teeth" but no. She's still my baby. And it's still hard.



Finally drunk. I have pictures that are almost identical to this one of Matthew and Zachy. The mouth falls open, their eyes droop, and their heads flop back. Hello giggle land!



Bye Bye Sweet Girl.



And then it's all over and we're ready to go home! Still sleepy, but awake.



OK, I had to take this picture. They insisted on pushing her out in a wheelchair. This is how the pictures always look when there is a new baby, but I'm in the chair, holding the baby. I told Matt now he knows how it feels to be a total goof being wheeled out when you are perfectly fine!

A little more about Emmie

My dad was here for the weekend and is now home safe and sound in Oregon. We had a nice visit, and it was really nice to have him here for Emmie's surgery. We had to be there at 5:30 and it was nice to not have to worry about the boys.
Emmie's surgery went well. It took them three hours instead of one and a half because nothing ever goes as planned with my family! Most of the time was spent trying to get an IV in place. Her hands and feet are now massive bruises. Poor punkin.
I keep thinking this may have been a blessing in disguise. The dentist said she is definitely refluxing. The decay on the back of her teeth was so great they were cupping. So like if you took them out, laid them on their fronts, they would be like a cup.
I hope so much that we will be able to treat this and finally have a happy baby.
We had looked into reflux a long time ago, and she was actually treated for it, but it was more in response to the fact that she couldn't breathe. That has resolved itself, but evidently the reflux hasn't.
I was looking on line for symptoms in toddlers and they fit her to a T so I'm really hopeful that she will get treated and finally be happy. Or at least not totally miserable.
Pictures to follow, so be on the lookout. After we get school done I'll work on uploading them and posting them.
~~~~~
My kids are outside playing, would you believe it is cold here?? I need to check the temperature, but they are all in pants and jackets and sock and shoes. Very unusual for them!