Catching Up

There are many things I want to blog about in the next few weeks. I have lots of delicious recipes with pictures to share. Plus, I'd like to write a post summing up the past year (kind of an anonymous Christmas letter). There has been quite a bit of excitement around our household this past week.

In the past week...

On Dec. 23, we took Ellie to the hospital with a fever
.
On Christmas Eve, Ellie was hospitalized. She had to get poked 4 times in 3 1/2 days (poor girl!)

On Christmas Day, we were allowed to leave the hospital on a pass and had Christmas with my husband's family

On Boxing Day, we had to return to the hospital for more blood tests and to see the doctor again; she was discharged in the afternoon, so we headed to my parent's house for Christmas. (We enjoyed their hot tub...sooo nice!)

On December 29, we decided to buy flooring to redo the flooring in our entire upstairs. The carpet is pretty worn and the linoleum in our kitchen is in need of replacing, too. Although we would have preferred hardwood, we just couldn't pass up a fabulous deal on laminate flooring from our favourite store, which costs WAY less. Now, we have A LOT of work to do in the next year! (Yikes! That part is really scaring me.)

On December 30 (yesterday), we had some potty training success! Yay! I'm just casually starting training as Bittles is showing interest and understands "things" :-).

New Year's Eve: We probably won't be heading out to any big get-together's tonight, unfortunately. I'm pretty disappointed about that, but somehow I have to realize that things have changed around here and I need to be content no matter the circumstance. Part of me still hasn't accepted that yet as I really miss getting together with people and going out and about pretty much whenever. Even though I am definitely a home-body, it's just hard knowing we can't do the things we used to do quite so easily. (I would LOVE to play some games and such, but big get-together's aren't the best idea with Little Bittle's neutropenia, especially since her immune system is even lower now that she's fighting off a cold. If she hadn't just been in the hospital, perhaps we would venture out somewhere. But, she just got out of the hospital - we'd like it to stay that way for awhile! )

And tomorrow I trade my bread for a....rice cracker? I am so not looking forward to that...

Happy New Year!

A Month of Gluten-Free

For awhile, I've planned on taking one month to go gluten-free, just to see if it makes any difference for my health. I've also been planning on trying to eat healthier, such as more organic, more fruits and veggies, more whole grains, less refined sugar and flour. Of course, I'm waiting until after Christmas and New Years. I figure this will be the best of both worlds - enjoy the Christmas goodies and then go g/f to lose the Christmas goodies weight! ;-) My mom is gluten-intolerant, and this often runs in families. While I'm at it, I'm also going to try my best to cut way back on refined sugar for the month. This is going to be QUITE the challenge, as I do like my breads and junk food. I figure I can do it for one month, and then if it makes a noticeable difference, the health benefits will be motivation enough to keep me at it. Truth be told, I'm really hoping that I won't have to be gluten free forever. If I do decide to eat gluten again, I'm hoping to grind organic wheat for bread and soak my grains whenever possible. Here's a rough plan for the next month. I've brainstormed some recipes that are gluten-free that I'll plan for for the next month. I'll refer back to this list when I do my weekly menu plan.

Breakfasts: Instead of my usual toast with coffee, I'll probably try having a rice cake with peanut butter, piece of fruit, egg/omelet, yogurt.

Lunches: I'm usually eating leftovers for lunch. Or, I often have a yogurt and fruit smoothie with crackers and cheese/tuna or something like that. For this gluten-free month, I'll probably stick with the same thing...just using rice crackers instead of regular crackers.

Supper: Here are a few gluten-free meal ideas I've been brainstorming

*Note: Although I'm trying my best to go truly gluten-free, there are some things (such as soy sauce and some canned soups in casseroles) that I'm just not going to worry about whether or not it's truly gluten-free because I am not celiac - I'll just try to use these in moderation*

Black Bean Soup, Sweet Potato Fries
Lemon Turkey Rice Soup
Lazy Cabbage Rolls
Turkey Casserole
Curried Beef Stuffed Squash
Pan-Seared Salmon with Thai Rice Noodles,
Flatlander Chili
Chicken Enchiladas made with Corn Tortillas
Slow Cooker Beef in Pomegranate Sauce, Mashed Potatoes, Green Beans
Zesty Chicken Oregano, Mashed Potatoes, Green Beans
Easy Curry Chicken and Rice
Spinach and Tomato Topped Salmon with Potato Wedges or Rice
Lemon Dill Baked Salmon
Asian Broccoli Chicken Stir Fry
Potato Soup

Christmas in the Hospital

On Christmas Eve, Ellie still had a fever and it looked like she also was starting to get a rash. So, we decided to take her back to the hospital, where the pediatrician on call admitted her for the night.

That was officially the.worst.night.ever.

Well..maybe I should take that back. It wasn't the worst night ever, as in, I was scared that something serious would happen to her. I've had worst nights, emotionally. Physically, however, it definitely takes the cake.

It was the worst night ever in terms of physical exhaustion. Ellie did not sleep at all. She also hadn't slept at all the night before that, which really didn't help. She refused to go to anyone except her Mama, and besides that, she did not want me to sit! If I sat, she screamed and screamed and screamed. So, I stood. All night long. As in, from about 8 p.m. to 6 a.m. I thought my legs and arms were going to fall off. In that time, there was about 30 minutes where I was able to sit down without having her scream. I was in tears holding a screaming, writhing baby for most of the night, praying for the strength to make it to the morning. Finally at about 6 a.m. she crashed for 1 hour with me on the hospital bed. In the morning, my husband came to provide me with some relief. I went home while he stayed with her, and I honestly do not remember even going to bed. That's how tired I was. 2 1/2 hours later, I felt like a new person.

On Christmas day, we got out of the hospital on a pass since her fever seemed to be gone. That was very nice! We were able to spend time with my husband's family and have her home for the night. Another terrible, awful, exhausting night. This time we were up until 4:30 a.m. with a screaming, writhing, baby. Finally, I gave up and thankfully she did too and crashed with me on the couch.

On the 26th we had to go back to the hospital so she could get more blood work done and see the doctor again. Her blood work came back about the same again ( .1 neutrophils) and low CRP (indication of inflammation), so the doctor was fairly confident it is just viral. He put her on some antibiotics (more for the prevention of bacterial infection while she fights the virus) and discharged her. We were able to visit my family for the day and even stayed the night, since Ellie fell asleep and we didn't dare wake her up to bring her home! She actually had a fairly decent night, only waking up for about an hour and a half in the middle of the night.

Now, we are home. I'm still very, very tired. Ellie is starting to cough now and has a runny nose. She also has another tooth poking through. She refuses to eat (she hasn't eaten anything for about 4 full days now), which is hard to watch. I'm still a bit worried about her, but as long as whatever she had doesn't develop into a bacterial infection (such as pneumonia), I think she'll be fine.

I was so tired when we were in the hospital that I didn't even get a picture of her spending Christmas in the hospital. Oh well! Probably something she'd rather not remember, anyway.

Extra Cuddles

We had a bit of a rough night last night with Ellie's fever spiking pretty high in the night (40.1C), which is around 104 degrees F I think. Thankfully, the tylenol brought the fever down pretty quickly. This morning, she is in pretty good spirits, playing and giggling at times (with a raspy throat!). She still has a fever and refuses to eat anything, but she's drinking quite a bit still. So far we've been able to keep the fever under control for the most part. She was up most of the night, but this morning, she was super cuddly and brought me her blanket and stuffed giraffe and cuddled with me. Eventually we both fell asleep on the couch, which gave me some much-needed rest, too. Plus, I enjoyed the extra cuddles from my little sweetie :-). I'm nervous about her having the fever being neutropenic, but I guess time will tell if it's viral or bacterial. So far, she doesn't seem a whole lot worse than yesterday (other than her fever being very high in the night). I wish I would have been more specific about asking the doctor when to bring her in. He did say that if she got worse to bring her in right away and not to hesitate, but I'm not sure how long I should wait if things don't really get worse but she still has the fever. I am thinking that if she still has the fever after 3 full days, even if she doesn't seem worse symptom-wise, then I'll probably bring her in again.

Trip to the E.R.: A Little Bittles Update

Just another crazy day in our household, which is almost starting to become the norm! This morning I woke up, excited that finally today it looked like Ellie would be able to go to her first big family get together since her first birthday, which we managed to celebrate right before she got sick. Since September, she has had to miss birthdays, Thanksgiving, and much more. (Not that we didn't have family things at our house with our own little family...but she/we have had to miss a lot of events since she's been severely neutropenic.)

I noticed that she didn't want to eat very much for breakfast this morning, and then when I put her down for her nap, she was very cranky. After leaving her in her crib for a little while, I decided to go get her since she doesn't always have a morning nap anymore. However, when I picked her up, she was still very cranky and I noticed that she felt very warm. I knew right away she had a fever. Mothers just know these things.(As a side note, I always wondered as a kid how my Mom could feel our foreheads and tell if we had a fever and approximately how high it was. Now, being a Mom myself, I have learned I can pretty accurately tell how high her fever is by feeling her forehead.)

So, I got the thermometer out and, sure enough, she had a fever of about 39 C (about 102 F). I waited about half an hour and then tried to feed her some lunch, which she did not eat at all. Her fever seemed to come down a bit and then it would go back up. I called my husband at work, and we decided that since she had a fever of over 38.5 C and was cranky and not eating, that we needed to take her to the hospital for a blood count, as the doctor had instructed us. Normally, things like this are not a big deal, but with her being neutropenic, a fever is always a lot more alarming with her than with a normally healthy child. I brought the febrile management plan along that our pediatrician had written up before he went on holidays, just in case she got sick while he was gone. Thankfully at the E.R. we were able to see an excellent doctor, who spoke with the pediatrician on call, another excellent doctor.

She got a complete blood count down, blood culture, CRP, and a couple urine tests. Her tonsils are swollen, so she is definitely sick with something. Her neutrophils came back at .1, which is pretty much zero. More concerning is that her complete white blood cell count was only 3.5, which is quite a bit below normal, too. The pediatrician on call decided that we would not start her on antibiotics yet, but rather we could go home on the condition that we watch her very closely and come in right away if she gets worse. He told me normally he would have admitted her, but since we already are aware of the problem, we could go home as long as we kept a close eye on her and brought her in at the first sign of worsening symptoms.

So, for now, we are at home. My sister came over for a couple hours to babysit so that my husband and I could go to our family Christmas gathering since she was pretty content and ate her supper this evening. We are keeping a very close eye on her and praying that this is just a virus that will quickly pass. I am concerned about her low total white blood count, which is the lowest it's been by quite a bit. One thing that is good is that today we found out (after many phone calls) that her penicillin allergy test came back negative. This means there is a chance she is not allergic to penicillin.

Please pray for wisdom for the doctors (determining whether or not to put her on an antibiotic) and for Ellie's healing. Pray this is just a virus that will pass quickly and not turn into something more serious.

Learning New Words Every Day

At about 15 months old, here are the words our Little Ellie can say, and she's learning more each day! Last week when we saw the pediatrician, I estimated that she could say about 20-30 words. I finally decided to take some time to write down all the words she uses (that I can think of, anyway!). I think I underestimated just a little! These are the words she says on a regular basis, and she knows what they all mean, for the most part.

1) Dada
2) bye bye
3) turtle
4) Mama
5)hi
6)uh oh
7)apple
8)pie
9)bright ("bite")
10)cracker ("cacka")
11)cookie ("cucka"
12)blue ("boo")
13)red
14)yellow ("ellow")
15)purple ("purpa")
16)hello
17)uncle (for some reason, whenever she sees a picture of anything, she says "uncle!")
18)auntie ("aunta")
19)grandpa ("papa")
20)pray ("pay")
21)amen ("ah-men")
22)Jesus
23)my (she sings this from her favourite lullaby...when she's tired, she often starts singing it!)
24)ears
25)eyes
26)mouth
27)nose
28)puppy ("puppa")
29)hat
30)hot
31)no
32)up
33)all done ("all dah")
34)book
35)bath
36)duck
37)cat ("tat")
38)car
39)please ("peeze")
40)milk ("muck"
41)pretty ("pwitty")
42)baby
43)ball
44)potty
45)poo poo
46)pee pee (think we're ready to start potty training ;)...gonna give it an try after Christmas!)
47)pants
48)dirty
49)cereal50)tractor
51)toot toot
52)boo
53)Dora (" Dowa") (from her cup...she's never actually seen the show. Lol.)
54)grover ("gwowa") (her puppet)
55)sit
56)blanket ("bank-ah")
57)peekaboo
58)mess
59)good girl ("guh-gahl")
60) snack
61) push
62) yeah

*At 18 months, here are more of her commonly used words and phrases in addition to her earlier words listed here. For the most part, she also understands these words*

63) is it?
64) there it is!
65) love you!
66) glasses
67) coming!
68) blessing (from her lullaby cd, she learned this one)
69) rocking
70) shirt
71) socks
72) pants
73)slippers
74) sorry
75) water
76) hungry
77) thirsty
78) ketchup
79) yogurt
80) carrots
81) tower
82) empty
83) kick it
84) Gerry (her stuffed giraffe that she is very much attached to)
85) tasty
86) stand up
87) sit down
88) sweep
89) cloth (coff)
90) teeth
91) close it
92) orange
93) brush
94) teeth
95) wash
96) bounce
97) stop
98) freeze
99) go
100) cold
101) ready
102) dolly
103) night
104) "side" (for outside)
105) snow
106) Sierra (her cousin)
107) phone
108) hair
109) open
110) close
111) auntie
112) yes
113) fruit (often "frook")
114) boots
115) shoes
116) bib
117) walk
118) run
119) dizzy
120) hamburger
121) cheese
122) dance
123) pooh coo (her favourite phrase BY FAR right now!) - from a Winnie the Pooh Book. She says it all the time
124) "ann-nan-na" (this is how she refers to herself!)
125) "num num"
126) dog
127) kitty
128) helper
129) fries
130) see you later
131) juice
132) cracker
133) coffee
134) chocolate
135) sweet
136) Bible
137) breakfast
138) supper
139) blocks
140) morning
141) taco
142) colour
143) pretty good
144) mittens
145) jacket)
146) watch
147) necklace
148) tickle
149) thanks
150) beep beep
151) honk honk
152) hug
153) high five
154) two
155) diaper
156) knock knockd
157) tweet tweet
158) bonkers
159) silly)
160) cockadoodledoo
161) oh NO!
162) thank you (" tank you")
163) birdie
164) touque (tooky)
165) meow (mau mau)
166) whoa
167) morning
168) grandma (gwah-ma)
169) tummy
170) ouch
171) keys
172) truck
173) horse
174) nay (horse sound)
175) fish
176) house
177)

Menu Plan Monday (December 20, 2010)

Not much of a menu plan this week since we'll probably be spending much of the latter part of this week with family and friends. Since we'll be with family chowing down on turkey, dressing, and cookies a lot of the time, my menu plan is simple as to avoid too much grocery-buying/wasting.
I'm going to attempt a gluten-free diet for one month (after Christmas, of course!!), so I've been doing some planning for that.

Sunday, December 19
Lunch: Pizza take-out
Supper: I had lefse, hubby had mac n' cheese

Monday, December 20
Waffles with Rhubarb Sauce and Whipped Cream, Bacon (terribly healthy, I know :-) )

Tuesday, December 21
Chicken Macaroni Bake (from the freezer), Steamed Carrots

Wednesday, December 22
Leftovers

Thursday, December 23
Let the feasts begin!! :-). I'll be making Cabbage Salad to have with a turkey feast

We'll be feastin' the rest of the week and spending lots of good quality time with family and friends.


*For more great meal ideas, visit Menu Plan Monday hosted by orgjunkie.com*


While you gather with friends and family and sing songs about the Saviour Jesus, take time to remember that although Jesus came to this earth as a baby, He did not stay a baby. He grew into a man Who gave Himself for us on the cross, rose again, and ascended into heaven. When He comes back again, He will be coming back as the glorious King. Do you know this Jesus, the Lord God who holds the key to death and Hades, the Jesus of the Bible? More importantly, does Jesus know you?

²¹Not every one that saith unto me, Lord, Lord, shall enter into the kingdom of heaven; but he that doeth the will of my Father which is in heaven.

²²Many will say to me in that day, Lord, Lord, have we not prophesied in thy name? and in thy name have cast out devils? and in thy name done many wonderful works?

²³And then will I profess unto them, I never knew you: depart from me, ye that work iniquity.

(Matthew 7:21-23)

For by grace are ye saved through faith; and that not of yourselves: it is the gift of God:

Not of works, lest any man should boast. (Ephesians 2:8-9)

Do you think you're a good person? Take this test to see.

Reading List 2011

I really like to read, but like so many people, I have a hard time finding the time. I mostly prefer non-fiction books about things like raising children, homeschooling, organizing, food, health, marriage, biographies, etc. Here is a list of 10 books I would like to read this year, in no particular order. I am thinking about putting all my 2011 lists, including my reading list, on my side column somewhere.

The Pilgrim's Progress by John Bunyan

Emma by Jane Austen

Shadow of the Almighty: The Life and Testament of Jim Elliot by Elisabeth Elliot

Shepherding a Child's Heart by Ted Tripp

The Bible (finish Old Testament)

David Copperfield by Charles Dickens

The Self-Sufficient Life and How to Live It by John Seymour

Don't Make Me Count to Three: A Mom's Look at Heart-Oriented Discipline by Ginger Plowman

The Truth War: fighting for certainty in an age of deception by John MacArthur

Choosing to SEE: A Journey of Struggle and Hope by Mary Beth Chapman

Those are just a few that I would like to get around to reading this next year.

3 Hour Drive to a Cancelled Appointment

Home. Am I ever happy to be here! Especially after a nail-biter of a drive yesterday in a freezing rain storm.

It is not a nice feeling driving on ice with no visibility and ice freezing onto your windshield. It is not a nice feeling to be driving 20km/hr on a gravel road and start sliding from one side of the road to the other side, heading for the ditch. It is an even not-nicer (how do you like that word!) feeling when you drive 3 hours in poor visibility in a winter storm warning in the worst driving conditions so far this year to arrive at an appointment you've waited 3 months for, only to hear..."ohh...did they not get a hold of you? Your appointment was cancelled today." Yes, indeed. We drove 3 hours one way in "travel not recommended" conditions for nothing. (On the plus side, I did get a little shopping in before I found out about my cancelled appointment, which was kind of expensive, but nice. Around Christmas time, my husband often lets me pick out anything I want or have been wanting for a long time as my "Christmas gift" from him. He is so sweet!) Of course, the roads were supposed to get much worse, so we didn't even get time to really enjoy our wasted trip but had to head back to my parent's house immediately to pick up our daughter.

After another 3 hours of driving in bad conditions (and passing a few vehicles in the ditch), we arrived at my parent's house to pick up our daughter. Then, we headed home onto a gravel road that was the worst road we have ever driven on in our entire life. We were going 20km/hr on the straight stretches and 5km/hr downhill or on the rutty stretches. It was terrible. We had a few instances where we were sliding into the ditch on pure ice, and I was just praying that somehow we would stay on the road. When we got to the highway, we were able to drive 60 km/hr on a road that wasn't great, but at least not nearly as bad as the gravel road we had just been on. Thankfully, after about 100 minutes (it's usually a 40 minute drive), we arrived at home, safe and sound.

I am not angry at all about my cancelled appointment. The doctor (an allergy specialist) had a family emergency, so there is really nothing anyone can do. Yes, it is a big inconvenience for me, especially since I had to drive 6 hours round-trip, but honestly, life happens. We need to be understanding of that. Behind every person is a family and another life apart from, and hopefully more important than, his profession.

I forgot to mention that I actually had a doctor's appointment first in my home town before we headed out for the 3 hour drive to the allergy specialist appointment. That appointment did not really go as well as I had hoped. I was told that I need to go back to the internist doctor, who told me I didn't need to see her again. Confusion, confusion, and more confusion. I feel like I'm running around in circles and not getting anywhere. Why is it that both doctors tell me I need to get more tests done to rule out/confirm adrenal problem and I need to see an endocrinologist, yet no one is willing to order the test or send out the referral? I have been told that it likely isn't Addison's disease, but my toes are darker than the rest of my foot and I have dark patches on my feet, too, which the doctors agree is weird. Like I said before, it's very unlikely it is Addison's Disease (especially because my sodium and potassium levels were normal on my one blood test), but because I have several of the clinical symptoms, my doctor told me it's still possible. I feel like I can't move on with my life until this serious disease is excluded as a possibility. Addison's is serious; in fact, pregnancy is very high-risk and many with the disease opt to not have more children. Ughh...I'm frustrated. I honestly don't even know what to do anymore. I guess my next step is to make another appointment with the doctor who told me she didn't need to see me again, and then beg for the test and referral to endocrinologist. That could take years. I don't want to wait years to figure out if I can move on with my life, have more kids, etc. etc. I cried for an hour after my appointment because the frustration is just too much. I feel like I'm being tossed back and forth between doctors and no one really cares. It might be okay with them if I have to have my life on hold for years, including whether or not it's safe to have more children, but it's not okay with me. All I ask right now is that the serious diseases be excluded. If I could just get that figured out, I wouldn't even care about a diagnosis. At this point, I would just be happy to hear what it isn't, even if that means never knowing what is really wrong. In the meantime, I'm on meds for abdominal pain/ulcers even though no one knows or cares to investigate further as to the cause of my abdominal pain/nausea.

Anyway, I am feeling fairly good today and have actually felt pretty good this whole last week, other than the usual lightheadedness, so I'm going to enjoy my day and try to be productive while I feel well! Here's hoping it's all a weird virus or non-permanent nasty reaction to the flu shot. About that some other time.

My Test Results: Perhaps Some Answers

*I posted this update once before. However, I took it down to edit it a bit with the intention of putting it back up again within a day or two. The thing is, I forgot about it until today!*

*Update* Since I first wrote this up, I have actually been feeling a lot better energy-wise and have had less headaches and no inner shaking in my head for the past 3 days, even though I still have the rest of my symptoms**

Truthfully the word that would sum up my feelings lately would be "frustration."

I am now 99.9% sure that my recent health issues are not in my head! YAY! (A good thing....I think?? ). Umm...check that. My health issues might be in my head as in...in my pituitary gland...which is technically in my head. Nevermind.

So, my few days of feeling good suddenly disappeared about a week ago, and now I have been left feeling completely and totally yucky for the past week. Think dizziness, lightheadedness, this weird tremor/shaking feeling inside my head, confusion, memory loss, freezing cold hands and feet that will NOT warm up (multiple doctors have made this observation), major headache, lack of appetite, nausea, abdominal pain, short term memory loss, discoloured toes and dark patches, and increasing fatigue. My blood pressure is often dipping low to 90/60 more or less. Sometimes it's more like 85/54, and other times it's more like 105/70 (much better). And get this, this morning I woke up and told my husband my head feels better this morning, so I immediately checked my blood pressure, and sure enough, it's 115/75, which is pretty close to my normal! That proves it to me. This is all NOT in my head! When I saw my family doctor last week, I think my blood pressure was 92/58, and the room felt like it was tilting from side to side. Not a nice feeling. That's when we decided to buy our own blood pressure machine. When my head feels funny, it's usually low. On the rare occasion when my head feels good, it's normal, or once it was even 130/85.

Test Results: Abnormally Low Catecholamines (I had originally put the test results as Adrenal Insufficiency, but I am not sure now if that is necessarily the case) Read this to get a little explanation of catecholamines.

Last week I saw an internist doctor about my test results from all the tests they did. And they DID find something weird with my tests - All of my catecholamines were low....abnormally low and not within the normal range. (see, it isn't all in my head!) Here's where I must try to hold myself back. I feel like even though they found a problem, they still aren't taking me as seriously as they should be. When I explained my dizziness and low blood pressure problems, I was basically told that ear wax was probably causing it all. I was also told that perhaps cheese was causing my abdominal problems even though I've eaten cheese my whole life and never had a problem before. And it's not like I'm suddenly just wolfing down enormous amounts of cheese.
Okay, the one thing I ask...beg...plead...is that you take me seriously. Please listen to me when I tell you something is still wrong. Please oh please believe me when I tell you (okay, not literally you my blog reader, but you know what I mean!) I used to feel fantastic, wonderful, full of energy, no headaches, no muscle pain, no dizziness (other than when I was pregnant), was exercising, running, baking, cooking, eating well, feeling as fit as a fiddle. I felt good. In fact, I felt GREAT (and, I was even getting up multiple times in the night back then!) And now...terrible, I feel just terrible. There is really no other way to put it. I look back on my time of feeling good with sheer wonder of how in the world did I do everything I used to do when right now I can hardly walk 10 steps without collapsing and my head feels like a pressure cooker while the room tilts from side to side.

From what I know, pretty much all of the symptoms can be related to having low catecholamines. The one thing that doesn't really make sense, is that I had a high heart rate in the hospital, which would usually mean increased catecholamines. Catecholamines tend to increase during acute phases of stress, but mine were low for some reason. When I was hospitalized with severe pain and very high heart rate, I wonder if I was perhaps having some sort of adrenal crisis or adrenal exhaustion. I really don't know what was happening then, but it seems like my body may have just had a bit of a freak-out. It makes sense in light of the fact that I was under a lot of stress at the time. I had so much pain then that I could hardly walk. I was also shaking like a leaf with tremors, low blood pressure, and a high heart rate.

I am not exactly sure what the doctor makes of this, but the question for me is: Are the low catecholamines caused by a problem with my adrenal glands (primary adrenal insufficiency or Addison's Disease) or is the problem with my pituitary gland (secondary adrenal insufficiency) or something else. I am wondering why they are not getting on the ball with further testing. IF, by some chance, I have Addison's Disease (I very much doubt I have this), it is very serious, especially is left untreated. In fact, it was usually fatal before the invention of steroids. I am not saying I have Addison's Disease as that is a very severe form of adrenal insufficiency.

However, an indication of Addison's Disease is hyperpigmention; the weird thing is that when I was in the hospital, the doctor noted that my feet look weird because they have dark patches on them and my toes are darker than the rest of my feet. I have looked at a few pictures of hyperpigmentation, and I'm not sure if that's what is going on with me or not. I don't know if it's because I have poor circulation, or because I have some other problem. I do know (and the doctor knows) that my feet don't look quite right, especially with the dark patches. This problem with my feet is a recent problem (as in, the past 2 months).

That is why I am left frustrated. I have been told maybe I'll be referred to an endocrinologist. I think I definitely need to see an endocrinologist...and soon...but it will likely be months if I even get referred. I was told by the doctor that I should carry a paper or something with me because I could just collapse if I actually have a problem with theses hormones. Doesn't the test pretty much confirm there is (or at least, was) a problem? Here is where I get frustrated with the medical system. On one hand, I am grateful to have publically-funded health care because I can see a doctor..several doctors..without having to dish out a dime (well, at least not in a direct way. Let's not forget that we are all paying for the system in one way or another.) I am not even the type to complain or get upset about waiting 2 hours to see a doctor. I would so much rather wait to see a doctor who takes his time with his patients than see a doctor on time and be rushed out the door. On the other hand, I wish I could just dish out the cash, find an endocrinologist that I could see next week, get my diagnosis, get a course of therapy established, and hopefully be on my merry way. Umm...I may or may not be guilty of googling something along the lines of "private clinics endocrinology" :-)

So, I guess I feel a little weird right now. I'm grateful in some ways that we may now have some solid evidence of a real problem and are maybe on the road to some answers. I'm frustrated and unsure about how to go about getting a confirmed diagnosis and wondering if I should be on medication for this problem. We need a lot of prayer for wisdom on what to do and wisdom for the doctors. And I definitely need prayer for my own attitude and patience. Of course I would like everything to happen lickity-split, but I should know by now that things never happen as quickly as one would like, especially with public health care. I also know there are many more people out there with much worse medical problems than my own. How selfish we (and by we, I mean I) often become at times.

Menu Plan Monday (December 6, 2010)

It's been awhile since I've posted a menu plan. It's not that I haven't been planning them - it's just that I've been too tired or lazy to blog them. Plus, we have been blessed by several people bringing us delicious meals (thank you, thank you, thank you!) to help us out during this crazy time, which has thankfully become less crazy but is still a tiny bit crazy, nonetheless.

First, an update:
Little Bittles is still doing fairly well. She has a bit of a stuffy nose and is sneezing a lot, so I think she might be coming down with a cold (or maybe it's just teething), but as long as it's "just" a cold, it shouldn't cause too much of a problem. We have ventured out a bit with her (to church twice and even to Walmart once). It's funny how I suddenly notice just how many people cough and sneeze. We are still doing our best to keep her away from noticeably sick people (which includes making a mad dash to the next aisle if the nice lady picking out a Christmas gift for her grandchild is coughing, sniffling, and quickly approaching our Little Bittles to tell us what a cute baby we have. And yes, that does happen...a lot!)
I am doing better than I was, albeit not great. This past week, I've been feeling awfully dizzy and lightheaded with a headache that has not gone away for 5 days now. The dizziness is constant and does not seems to get better no matter how much I drink or rest. My blood pressure is low (around 90/55 most of the time), and the one time I did feel better for about 5 minutes I checked and my blood pressure was 115/75. I know from the past, that my "normal" blood pressure is right around 120/80 because when I got out of the hospital and was feeling pretty good, I checked and it was 125/80 something. So, I'm pretty sure the low blood pressure is what's giving me a lot of grief these days. My question is...why do I have low blood pressure and constant dizziness? I am also still having some abdominal pain and nausea, but the severe pain in my legs has not come back, thankfully. Today I'm seeing my internist, so hopefully we can figure some stuff out because this is just not working for me. If I have to go the rest of my life feeling like this, then there will be a lot of changes around here. I actually debated about whether or not to head to the hospital over the weekend because I was feeling oh-so-terrible at times, but I decided to just hold off and wait until today since I had an appointment today anyway. We'll see what happens today.

And now, for the menu plan. I am hoping to keep it simple since I'm still feeling not-so- wonderful.

Sunday, December 5
I forget what we had for lunch (My short-term memory has been terrible lately)
We ate at my Mom and Dad's for supper

Monday, December 6
Hamburger Soup (from freezer), Cheese Toast

Tuesday, December 7
Turkey Rice Casserole (an awesome new recipe I discovered - will blog it sometime - using leftover turkey in the freezer)
Steamed Green Beans

Wednesday, December 8
Leftovers

Thursday, December 9
Cheesearoni Beef Casserole (recipe to come sometime), Tossed Salad

Friday, December 10
Leftovers

Saturday, December 11
Black Bean Soup, Savoury Flax Biscuits

*Fore more great meal ideas, visit Menu Plan Monday hosted by orgjunkie.com*

A Lot on My Mind

I've had a lot on my mind lately - so much, in fact, that my brain is feeling very "cluttered." Do you ever get that feeling? My brain feels a bit like a messy closet I've stuffed so full of stuff that I can't fit any more in and if I open it up, everything is going to come tumbling out. There have been so many times I've wanted to sit down and type out my cluttered thoughts to unclutter my mind, but for some reason, I just haven't gotten around to it until now. And now, I have so much going on in my mind that I don't even want to attempt to write a coherent, concise (ha! am I ever concise??) blog post about a specific topic. Thus, I'm going to crack open the cluttered closet of my mind and let my thoughts tumble out in a bullet list. Oh how I like bullet lists! On my mind lately....in no particular order

• Dreading Little Bittle's blood test tomorrow. Last time they had to poke her like 15 times before getting the vein. This is agony for a mother to watch. How I pray tomorrow will go well.
  
• Tomorrow I get my 24 hour heart monitor.
  
• Reflecting on our past 2 1/2 months of trials. Hope to post more on that another day.
• Changing our lifestyle to more "natural" and healthy and organic. This includes cleaning products and foods. I'm hoping Heavenly Homemakers is going to help me out with my plan to move our family toward healthier, more wholesome eating. This is with the hope that our health will improve as we try to eat more natural food and get away from chemicals as much as possible. Little Bittles has some eczema and I have had skin problems and odd rashes for years. We want to see if this will help at all, but I haven't mustered up the energy to truly start on this yet. More research needed.
  
• Finished reading the book Passionate Housewives Desperate for God. It speaks out against white-washed feminism and the self-centered "me-ology" (books that teach you to pamper rather than sanctify your flesh), which seems to run rampant in many Christian circles these days. I especially like the reminder that my job has far-reaching effects. The way I raise and train my daughter has the potential to affect generations to come. My biggest caution is that it does have some "dominion/kingdom-now theology" scattered in it. There are a couple statements that I completely disagreed with in this regard. I think the authors might hold to reformed theology, which I do not completely agree with, so if you keep that in mind, it's a pretty good read otherwise.
  
• Finished reading Mistaken Identity. Can't tell you how many times I was in tears reading this book. This is the true story of two Christian families who were impacted by a horrific car crash and a terrible mistake. One girl was wrongly identified as the survivor of a crash in which several people died. It took 5 weeks for the mistake to be realized. This book is filled with scripture, too. I was touched and amazed reading how the Lord worked in this situation to bring others to Himself. Such an encouragement to me, especially while thinking about our recent trials, which are nothing compared to what these families went through.
• I'm being bothered by my lack of organization in things such as closets, drawers, and our pantry. It's starting to drive me crazy, but I feel too overwhelmed to begin.
  
• It's driving me crazy that the million-and-one things on my mind are driving me crazy! The Lord reminds me time and time again that I need to get my priorities in order. I think I have obsessive tendencies (make that, sinful tendencies) in many things. I am frustrated by the fact that I am so often distracted by things that are really not important in light of eternity. You would think that the recent trials our family went through would remind me of this (and they do!). That is why I am so frustrated! I KNOW better! I pray God will help me in this area. I think it's a matter of daily submitting my will to His. I need to say every day, "Lord, not my will but Yours be done." Things like obsessively organizing my closets and drawers are somewhat important, but not that important. I can't take my closet, organized or not, with me when I die.
  
• We are dabbling a bit in potty-training with Little Bittles. No pressure, but I thought I'd give it a try since she's running around, talking quite a bit, and understands a lot.
• I really need to work at training Little Bittles better in certain areas, namely obedience and not throwing fits. She is a smart little cookie, and she knows it! During the past 2 1/2 months, child training was pretty much thrown out the window and we let her get away with just about everything. Now I am going to have to work at undoing a few bad habits that were developed.

Atypical Results and Some Confusion

Ah yes...the field of medicine. A person might think it should be possible to get a definitive answer - That it should be a yes or no, black or white, this or that, etc. And while medicine can often provide a concrete answer when it comes to interpreting tests and making a diagnosis, those of us who have complicated health issues know that just as our bodies are unbelievably complex, so is figuring out what the problem is when something unbelievably complex goes wrong with our bodies, especially when the presentation of illness is not "typical."

Yesterday we took Little Bittles to her pediatrician. We were hoping he had received the report from the bone marrow test (which he hadn't yet), and we wanted to discuss with him the results. Here's the thing; when we told him that the test showed she had 15% blasts but no cancer, our doctor didn't really believe that. It's not that he didn't believe she doesn't have cancer; he said, "If they said it's not cancer, then it's not cancer." However, he did not really believe that she could have 15% blasts and NOT have cancer! In other words, he suggested perhaps whoever interpreted the test got blasts mixed up with another cell such as reactive lymphocytes. I think the reason our pediatrician is wondering about this is because usually when they find 15% blasts, it IS cancer. This goes along with what the hematologist told me on the phone; he said that when he first saw the number of blasts she had, he thought that it was leukemia and phoned my husband immediately to tell him that the result on first look was very bad. When he phoned me with the full study a few days ago, he made it very clear that he really did think it was leukemia at first, but that when they looked at the cells, they were normal and not cancerous! There seems to be no explanation for this. The more research my husband and I do, the more we realize that the chance of her truly having 15% blast cells and not finding a single cancerous cell would be next to impossible a miracle.

Of course, I have to insert here that we are NOT doctors, so we could easily be wrong about this, but it kind of makes sense in light of the fact that our pediatrician has a very hard time believing the result and that the hematologist was surprised that with that high number of blast cells he did not find leukemia. I believe that time may tell if this is a miracle or if they were wrong with the test results.

Now here's where we get a teeny-tiny bit nervous. We do not doubt for a second that the result could, in fact, be a miracle. We serve a mighty and powerful God Who can heal our bodies and do the seemingly impossible. However, we are also aware that doctors, like everyone else, are human and make mistakes sometimes. So a very small part of us wonders if perhaps they did make a mistake on the test and the results are not correct (Perhaps they got blast cells mixed up with another type of cell, like our doctor suggested was possible). It struck me as odd when the hematologist who did the test told me, "Even if we would have found cancer, we probably wouldn't treat it yet anyway." That comment makes me wonder if maybe he was so surprised that they didn't find cancer when he saw the high number of blast cells that he is wondering if they might have missed it. However, the fact that Bittles is clinically fine right now indicates that if by some very, very small chance they missed finding cancer in the bone marrow, the cancer is not likely acute right now. I personally HIGHLY DOUBT that they would have missed finding the cancer cells because I would think that upon finding the high number of blast cells (indicative of leukemia), they would have been checking out those cells VERY closely for cancer. Our doctor also said that if they say the cells aren't cancerous, it isn't cancer.

Now, clinically Little Bittles is fine right now, which is an excellent sign. There were a few concerns at the beginning about some strange bruises and her not eating or drinking well. However, there is currently no issue with that at all, so it is extremely unlikely that she has acute leukemia right now, given her good clinical presentation. Nonetheless, her high number of blast cells is very, very strange, and our pediatrician wants to keep a very close eye on her for any signs of cancer.

Follow-up: Little Bittles will be having a complete blood count done next week as well as an allergy test to see if she is for sure allergic to Penicillin. Depending on the result of her cbc (complete blood count), she will be getting routine blood tests done once or twice a month until things get more normal. A fever of around 38 is not emergent but warrants a trip to the doctor the next day. A high fever with other signs of sickness is an emergency for her.
Prayer Requests: Wisdom for the doctors as there seems to be some confusion about the bone marrow test results, protection from illness as we venture out a little more, good results from the blood test and allergy test next week, complete healing of our daughter's blood and bone marrow, healing for a diaper rash that appeared yesterday and is much worse today. (Not sure yet if it's just a normal diaper rash or an infection, but in neutropenic patients simple things like diaper rashes can become concerning fairly quickly if they are actually bacterial infections.)

Grace and peace to you,

The Diagnosis...I Think

First of all...Praise the Lord! Little Bittles does not have leukemia (though on first glance, the doctor thought it was leukemia). The pediatric hematologist (doctor specializing in children's blood) phoned us yesterday to discuss our daughter's bone marrow test results. I will do my best to explain this all now, although I'm pretty sure I don't fully understand all the medical stuff myself. Thank you again for all your prayers and your continued prayers for our daughter's protection from infection and complete and total healing.

The Diagnosis:
So, to start off, the doctor told me he is now 99.9% sure our daughter has what they call "chronic benign neutropenia" (click on the link to learn more). I think this is the term they use with neutropenia (low neutrophils) when they do not know exactly why the patient has neutropenia and there are no cancerous cells. They do not know if she was born with it or developed it. She is still in the severe range, but there is a decent chance that she might "spontaneously" get over it in a few years. I prefer the term "healed" :-)

Now, here's the crazy thing:

The doctor told me that at first glance at her test, he actually thought our daughter probably had leukemia. This is why he phoned my husband a couple hours after the test to warn him that the results were very bad upon first glance. The reason for this is because of one very strange thing with our daughter's test; she has an abnormally high number of blast cells (click the link for a short description) , the immature "pre-cells" of the bone marrow. Normal is 5% and our daughter had 15%. A high percentage is an indication for leukemia. (From what I read, if you have 20% or more blast cells, it's an automatic leukemia diagnosis.) However, when they examined the cells closer, they were able to tell that all the cells were normal blast cells and not cancerous. They are not really sure why she has such a high number of these cells. All they know is that right now they are not cancerous. Apart from this, the rest of her bone marrow test was typical of what they would expect to find in chronic benign neutropenia. From what I understand, this means that she does have some immature neutrophils in her bone marrow that her body could release early if she got an infection. These would not be as effective as mature neutrophils, but they would be able to provide some "ammunition" if she did get an infection.

Treatment:
Right now she does not have to undergo any treatment for her neutropenia. There is a drug called a granulocyte colony-stimulating factor (G-CSF), which can be administered to help increase your production of neutrophils. However, the doctor told us not to use it unless we're forced to because it might be linked to developing leukemia later on. (10-20 % of patients who are treated with it develop leukemia later on). They are unsure if the drug or the actual condition is linked to developing leukemia.
She is still much more susceptible to infections than the average person, so we will do our best to live a normal life while avoiding contact with anyone who is obviously sick. Every time she gets a fever, she will have to see the doctor, likely go on an antibiotic, and have a blood count done. Depending on the blood count and if she responds to antibiotics, she may or may not have to be treated with the G-CSF. They are hoping (and we are praying) that she might "spontaneously" get over this in a few years. (We are praying for a quicker healing than that.)

How are We Feeling?:
We are SO thankful that our daughter does not have leukemia. This is a huge relief, and we are praising God. After the doctor phoned me with this news, I literally scooped up Little Bittles and she squealed with delight as we zoomed and danced around the house, praising God for the good news.
We are still a little nervous about the fact that she does have such a high number of blast cells, which is commonly found in leukemia. However, we are trying not to worry about this, and we are even wondering if this was the big answer to prayer since I got the impression the doctor was surprised and had no explanation for the fact that the cells were normal, since she had so many of them.
After living in a bubble for 2 1/2 months, we are really looking forward to getting back to some sort of normalcy, including go out and about, attending church, and just getting on with our lives now that we have the bone marrow test results. Yes, we will be a bit more cautious and do our best to avoid people with infections, but I think we will be able to live a pretty normal life for now. Praise the Lord!

How Can You Pray?

Give thanks to God that she does not have leukemia and does not need to be treated yet. Pray for her protection from serious infection (especially because of her allergy to the best antibiotics). Pray that she will be healed from this chronic benign neutropenia. Pray that her abnormal number of blast cells will not develop into leukemia.

Psalm 34 has probably been our "theme Psalm" this whole time. God led my husband to this specific Psalm when my husband was calling out to God when this ordeal first started. We have come back to it time and time again during this time. Here are the first few verses of the psalm.

I will bless the LORD at all times: his praise shall continually be in my mouth.

My soul shall make her boast in the LORD: the humble shall hear thereof, and be glad.

O magnify the LORD with me, and let us exalt his name together.

I sought the LORD, and he heard me, and delivered me from all my fears.

They looked unto him, and were lightened: and their faces were not ashamed.

This poor man cried, and the LORD heard him, and saved him out of all his troubles.

The angel of the LORD encampeth round about them that fear him, and delivereth them.

O taste and see that the LORD is good: blessed is the man that trusteth in him.Psalm 34:1-8

Giving thanks,

Meet "Little Bittles"

Mommy and Daddy decided that it was probably okay to post a few pictures of me, since we know there are lots of people praying for our family who would like to see what I actually look like. Did you know that my name means, "God Answers Prayer" ? Isn't that neat? Even though we never imagined this all would be happening, God knew that I would need lots and lots of prayer! You can just call me "Little Bittles" for now, even though that's not my real name. Mommy and Daddy do call me that sometimes, although I'm not sure why; it's kind of a silly name. Then again, they have lots of silly names for me. We are kind of a silly family. I thought you might like to know a bit about me and what my life is like. Here are some pictures and "get to know me facts"!

I love to swing!



I really don't like to sleep much, but when I do, I'm pretty cute!



I love cake! Then again, who doesn't??



I started walking when I was just over 10 months old. Now, I run so fast Mommy can barely catch me. I LOVE music so much that whenever I hear music, I break out into a jig!

I am a very good helper, and I like to do all the things Mommy does. See, I even help Mommy vacuum sometimes.



I love to help Mommy bake cookies for Daddy. I get rather upset if I can't be a part all the action. Mommy tells me she is baking for Daddy, but I see her sneak a cookie or two when she thinks I'm not looking.


I help with the laundry, too!




I'm pretty independent. I like to do things myself. I even feed myself sometimes. I like to have a fork in each hand and stir my food around and around.



I have visited lots of doctors and been in the hospital more times than most kids my age. It's kind of weird because most of the time I actually feel pretty good (until they try poking me with those crazy needles!) I think I've had my blood taken more times than my Daddy has his whole life.

My Daddy is pretty awesome. I like to cuddle with him. I don't even mind that he has to wear a funny mask sometimes because I know he's trying to protect me.





That's about it for now! One last shot of me...just because!

I'm Feeling Better - Praise God!

Well I think it's about time for some good news! I am feeling MUCH better - Praise the Lord! On Friday night I was still having a couple of, what I refer to as, "attacks" where I am in tears because of the pain in my legs and then my hands get this itchy/painful sensation and turn all blotchy. My stomach was also bothering me quite a bit still on Friday and my energy was not so great. Then, Saturday morning I woke up and thought, "Hmmm..I feel pretty good today." I was hesitant at first because I thought that maybe I was just having a good day. However, yesterday and now today have both been good days too, with virtually no pain and much more energy, so I'm thinking now that I'm healed. I still do have a few of those lumps on my legs, but I think they are shrinking. My heart rate has been much better, which I'm not sure if due to the medication I'm on or to the fact that I'm better. Whatever I am healed from, I do not know, but for now I'm extremely thankful to be feeling pretty much like my usual self, physically.

I am also happy to report that our little girl was able to come back home on Sunday after spending several days with her grandparents, while we tried to figure out if I was coming down with something else or not. After a few days of swollen glands and a slightly sore throat, I saw the doctor, who did not think it was much of anything. That, combined with the fact that I've started feeling better, helped us decide that we could bring her back home again. I missed her SO MUCH! Here is the crazy thing; until these last couple of weeks, we had only left her for the whole day (not even the night) ONCE since she was born, and she is almost 15 months old! You can imagine how hard it was for me to be away from her when I was in the hospital 3 nights last weekend and then have to send her to her grandparents for another 3 nights right away again. I know she had a really fun time with her grandparents, though, and I'm pretty sure they enjoyed having her visit, too! However, I am happy to have our little girl HOME! She even slept the WHOLE NIGHT THROUGH at home last night, which, if you know anything about her sleeping history, is pretty much a miracle in and of itself!

We have also been blessed beyond belief these last few weeks with all the people praying and caring for our family during this difficult time. Honestly, it brings me to tears often when I think of the amount of love we have been shown by people we don't even know. Just this evening as I dropped off some dishes at a friend's house from a meal she graciously brought us, someone phoned her and was asking about our daughter and my blog updates. Please know how thankful we are for all of you, from our close friends and family, to people we don't even know. Thank you for your prayers and for your thoughtfulness and help. We have definitely learned how even simple words and acts of kindness can make a huge difference for someone going through a tough time. I know my husband and I have talked a lot about how we need to show more compassion to those around us. It is so silly that it takes something like this to show us how we need to help people more, but it is the truth that God has used this experience to teach us this is something we need to work on.

We are expecting to find out about our daughter's test results this week sometime. We are hoping that the fact we didn't hear anything last week is a good sign. It is a bit strange because part of me feels like everything is almost normal today with me feeling better and our daughter home again and looking good, clinically. Then there's the other part of me that knows that with one phone call from the doctor, everything could get turned upside down again and reality will hit us with the fact that even though our daughter looks healthy on the outside, she is actually a very sick and fragile little girl.

How can you pray?

First of all, praise God that I am feeling so much better right now and that our daughter can be home with us again for now! Praise God that our daughter still has no signs of infection! Pray that we will have test results back this week. We still haven't had a definitive, "No, this isn't cancer", so that is still in the back of our minds. Please pray for wisdom for the doctors and us parents as we will likely have to make some decisions as to treatment options for our daughter. Depending on the diagnosis, she may have to be treated with a drug that is quite possibly linked to developing leukemia later on (as high as 20% treated with the drug develop leukemia in 10 years).

Stayed tuned, I'm going to share a picture or two of our little girl next time! With all the people we don't even know praying for her, we figured it might be nice for them to put a face to that little girl they are praying for! Names...well we are going to hold off for now online. If you know us, and want us to publish your comment, please don't refer to our real names. If you prefer, you can leave a comment with our names, and we will definitely read it. However, we probably won't publish it on our blog, just for the sake of being extra safe for now. We DO appreciate all the comments and support, though!

Thinking Bout It

Thinking about going a little less anonymous on the blog. Perhaps I'll share a picture or two of our little one. Not sure yet...but thinking about it. No promises, though. :-) I'll talk more about it with my hubby later to get his thoughts.