Trusting God: A Lesson in Faith From My Great Grandma

This will probably be my last post until we hear something from the specialist we are seeing on Monday. We are reformatting our computer, so I won't be posting for a day or two now. I just want to thank you all so much for praying for our little girl. Please keep praying for her healing, if it be God's will. We are praying for a miracle to happen in her body (if it hasn't already, which is very possible) and that there will be no doubt as to the power of God. We know God hears our cries. Psalm 34 has been a very important passage for us during this time, as God gave my husband this Psalm when he was praying a few weeks ago.
I just want to share with you a lesson in faith and trusting God from my Great Grandmother who died before I was born. I never met her, but I have this story about her, which has really stood out in my mind these last few weeks. I'm retelling it (with a few changes to keep some anonymity) from a story my Great Aunt wrote down about her mom (my Great Grandma).

"This memory distinctly stays in my mind because it was my first lesson in trusting God. I was sixteen years old at the time. The year was 1942. Our community had no rain, and the crops were burning up. It was extremely hot and dry, and the church had called a prayer meeting to pray for rain. Being the end of June, the school had a wiener roast planned, which happened to be the same day as the prayer meeting. When Mom and Dad left for the prayer meeting (they typically walked to the church from the farm and they were in close proximity), Mom said to us, "If you see any clouds, get out of the coulees. If you don't leave right away, you won't get home tonight." The school was planning to have their wiener roast in the coulee and the road out of it would be impassable if it rained because of the soil conditions.

In those days, the roads were not graveled as they are today. Mother picked up her rubber boots and took them with her as she and Dad headed out the door. We had such a downpour that night that we barely got back to the yard. Dad had to clean a lot of mud off his shoes the next day from his walk home from church in the mud. She trusted God enough that it would happen, that she took her rubbers along, believing she would need them for the walk home in the rain. She was the only one there who did so. She took action in expectation of an answer. Even if she had been the only one at the prayer meeting, she knew God would answer her prayer."

We are convinced that the fact that our daughter's name means God Answers Prayer is no accident. We know the meaning of her name is significant; we just don't know in what way yet. Please have faith that God can heal our little girl if He is willing. Don't give up. Don't lose hope. And, please don't stop praying. Have faith that God will use this situation to glorify His name. We don't know what the future holds, but we know Who holds the future.

Bad News Today - Hematologist and Bone Marrow Test

Wow...where to start? So, today we got our daughter's blood test one day earlier than usual (since I had to get my blood taken today, we thought she might as well get her's done, too.) Around 1:30 p.m. the phone rang, and I knew it was bad news once I saw the phone number seeing how it only took 2 hours from the time her blood was taken for the doctor to phone. The doctor asked me if I had a few minutes to talk, so I knew something was wrong. Turns out that her blood work came back worse again. This time, however, there's cause for more concern because now her red blood cells have dropped and her other white blood cells have gone down, too. Her neutrophils are worse again this week (4.2%). Her platelets are about the same (still higher than they should be.) The newest concern now is that her red blood cells have dropped. In every other blood test she's had, her red blood cells have been fine along with her other white blood cells (other than the neutrophils.) Basically, this is an indication that there is likely something more serious going on with her. The doctor said that he's given her time to get back to normal from her infection and that she should have improved a lot more by now. So, something is wrong. For some reason, her body is not recovering properly from the infection, or the infection was just a result of a problem that was already there.

The doctor said that there is really no other option but for her to now have a bone marrow test. She is seeing a hematologist on Monday and then there will be a decision made as to when she will have the bone marrow test done. The hematologist and the pediatrician both agreed that she should probably have one done at this point, so I think the hematologist will have the final say on it and discuss this with us on Monday. This scares me because I know a bone marrow test is not a fun thing and I hate the thought of her having to go through so much tests again. It also scares me because I know they don't just order a bone marrow test for any old reason. It also scares me because I know there's a risk of infection with a bone marrow test. I also don't like the fact that she'll probably have to be in the hospital again. It is just so important right now that she does not get an infection; I cannot stress this enough. The fact that she is allergic to the best antibiotics means that if she gets an infection, it could be life-threatening.

I can hardly even believe this is happening. I thought we were all done with this and that she was on the road to recovery. It feels so strange. Some moments I think it's not even happening, and I'm just doing my own thing and then the next second (literally, seconds), I am on the floor in tears. I try my best to keep it together in front our daughter. All I want to do is hold her all day long and never let her go. On top of all this, my husband's Grandpa is in the hospital and I saw my doctor because of a lump on my leg and now pain in my joints, which is pretty bad at times (that's why I had my own blood work done today). Even though I have a million questions as to why this is all happening (especially with our daughter), I know God is still sovereign (read the book of Job). I don't need to know the answer to the question "why". I simply need to trust Him. (Why is it so hard for me sometimes?)

What I do know is that if God would decide to take our daughter home to be with Him, she will be in heaven. We have many family members who would not be in heaven if they died today. How about you? Are you going to heaven when you die? Have you received Jesus's payment for your sins by placing your faith in Him? If not, what are you waiting for? You never know how much time you have left. Every other "religion" will tell you that you can save yourself by doing good things or "trying your best" to be a good person. The Bible teaches it is only by GRACE we can be saved. On our own we can never be good enough because God is a perfect and holy God who cannot stand any sin. We have all sinned, and just like in a court of law today, payment must be made when we break the law. Jesus made that payment for you by shedding His blood on the cross. You can either receive His payment by placing your faith in Him, or if you choose to reject Him, you will have pay the penalty for your sins for all of eternity in Hell. This saddens me very much. How I pray that if you have not received the Lord Jesus Christ through faith that you will not delay any longer.

How can you pray for us? Please pray that our daughter will stay free from infections. Pray that my husband and I would stay free from infections, too. My husband works in the health industry and is in contact with sick people all day. Pray for our daughter's healing. Pray for wisdom for the doctors. Pray for the salvation of our family members who have not yet repented from their sins and placed their faith in Christ.

Menu Plan Monday (October 25)

Here's the plan for this week:

Sunday, October 24
Lunch: Subs
Supper: I was at my parent's house, hubby was visiting his grandpa in the hospital

Monday, October 25
Farmer Sausage, Perogies with Cream Gravy, Green Beans

Tuesday, October 26
BLTs, Fries

Wednesday, October 27
Sausage Potato Soup (using leftover sausage from Monday), Cheese Biscuits

Thursday, October 28
Leftovers (if no leftovers, we'll just have pasta with a simple sauce)
(I'll be cooking the turkey overnight)

Friday, October 29
Turkey, Stuffing, Mashed Potatoes, Gravy, Carrots
*I've had a turkey in the freezer for a really long time, so I figure it is time to put it to good use!*

Saturday, October 30
Leftovers

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

Update for This Week

Just a quick update on our little girl. She is currently getting weekly blood work done, and we just got the results from this week's tests, so I thought I would share them.

Unfortunately, her blood work has not improved in the last week. Her neutrophils this week are down to 5 % (last week they were at 8 %) and her platelets are about the same (still a bit higher than they should be). Obviously we were hoping for more improvement rather than the apparent step in the wrong direction. The doctor isn't really concerned, but it is hard for us parents to not become discouraged and concerned when it looks like things have gone a bit backwards instead of forwards. As for the rest of her health, she is doing fairly well still. Her diaper rash is nearly gone again (other than flaring up every once in awhile). She did get a small cut on her hand yesterday, so we are praying that it will not get infected. She also has a couple of red spots on her face that look like pimples. I am wondering if they might be related to the sty (staph infection) she had recently (the sty is gone now).They don't look too bad yet, so I am just keeping an eye on them for now.

We just so desperately want our daughter to be back to normal and back to living a normal life! Being in isolation is really hard. We want her to be able to freely play (and drool on the same toys!) with her cousin. We wish she could run around outside and play in the leaves and enjoy the fall weather. We want to go out and about, attend church, and do normal things as a family again. It just looks like things are going to take some time to get back to "normal".

We are thankful that we were able to have Bible Study last night, which we haven't been able to do for several weeks. Our Bible Study group is very small (just 4 of us so far) and our daughter is in bed asleep for it, so as long as everyone is healthy we can still have it. It was a great encouragement and so nice to fellowship again.

As a side note, I still have a strange lump on my calf, which hasn't improved at all this week. In fact, 2 days ago, another lump mysteriously appeared overnight on the front of my leg, which is also painful. Maybe it's from doing a little more housework than usual yesterday (or maybe it's all in my head), but today my legs are really sore. Sometimes they were so sore, I was limping around the house. They just feel really achy and tight and sort of like they are burning/tingling at times and that I'm on the verge of getting a dreaded muscle cramp in my calf. Weird. I just don't know anymore. I just don't know! I seriously think I'm going crazy. I need to get out of the house. Thankfully, I'm meeting a couple of friends this weekend for coffee while my husband stays home with our daughter for an hour or two. Oh yeah, and I'm also seeing the doctor on Monday about my leg lump issues.

So, how can you pray?

Please keep praying for our daughter and for our family. Pray that she will improve (A LOT) this week and that the doctor would have wisdom as to whether or not she should see a specialist. Pray that she will remain free from infection. Pray that these weird lumps on my calf would heal and the doctor can figure out what they are. Pray that we will have endurance to get through this as we still haven't been able to get back to what was once "normal" for our family.

Ric Rac Receiving Blanket

On Saturday I decided to try my hand at a little sewing project, and I think I can now say that sewing is my favourite of the "handicrafts". A few months ago, I found this tutorial for sewing a ric rac receiving blanket, so on our holiday to the USA, I picked up some flannel fabric and ric rac for the project. I'm really kicking myself for not picking up more fabric while I had the chance. Fabric here is so expensive and the nearest fabric store is 3 hours away. I am very much a sewing beginner (as in, I barely know anything about sewing), so this project is perfect for people like me who like to sew but aren't very skilled at it yet. The tutorial has awesome step-by-step instructions, and the blanket is a very nice size - not too big or small. Originally I had planned to give this blanket away as a gift, but I'm thinking I may just keep it for a future baby boy we might have someday.


Both my mom and my mom-in-law are talented seamstresses. I really wish I would have taken the time to learn more homemaking skills such as sewing when I lived at home. Thankfully, it's never to late to learn (although it's a lot harder to find the time)! Even though it might not be economical to sew these days, I think it's good for homemakers to know the basics of sewing. Besides that, it's a fun little hobby, and handmade things are always so much more special than store-bought.

*I'm linking this post to Raising Homemakers*

Precautions with Neutropenic Patients

Before our daughter was diagnosed with severe neutropenia about a month ago, I had never even heard of neutropenia before, so I had no idea how to take care of a neutropenic patient until I did some research of my own. Upon her first blood test, her neutrophils were at zero, which is a medical emergency, and her chest x-ray showed she had pneumonia. Our pediatrician was very concerned about her because having a neutrophil count of absolute zero is very serious and the risk of sepsis setting in is high. The incidence of mortality and the time antibiotics are first administered are directly related. This is why, when we first got to the hospital, I was adamant that antibiotics be started asap. Unfortunately, 2 days after the IV antibiotics had been started, she had an allergic reaction to the antibiotic, and the antibiotics had to be stopped. Having an allergy to the antibiotics means that we need to be extra cautious while our daughter is neutropenic because if she develops an infection, the antibiotics she can take are very limited and not as effective in neutropenic patients or as safe in children.

(Currently, our daughter is still neutropenic, but she is improving slowly. This is a very good sign that this was caused by a sinister virus and that she will eventually make a full recovery; it just might take some time.)

For those of you who want to know more about neutropenia, here is a good overview of what it is. You can find more information about neutropenia here, too. I have put together my own little list about precautions to take with a neutropenic person. My husband and I have done lots of research about neutropenia, so this list is just a compilation of precautions I can think of off the top of my head from information I've gathered over these past few weeks.

• Neutropenic patients need to be in strict isolation. (No contact with people displaying any signs of illness, including coughing, sneezing, sniffling. Medical professionals should wear gloves and a mask when caring for a neutropenic patient.)
• Avoid crowds and public places. (We have chosen to have only immediate family visit our daughter for now and only if they have no symptoms of sickness.)
• Avoid contact with anyone who has received a live vaccine in the past 30 days (6 weeks for chicken pox vaccine)
• Our pediatrician recommended that our daughter not get any vaccines for at least another 8-12 weeks.
  
• Frequent handwashing and good hygiene is very important for preventing the spread of infections
  
• Rectal thermometers should not be used in neutropenic patients
• Avoid fresh fruits and vegetables, salad bars, buffets, uncooked grains, yogurt, foods with active bacterial cultures in it, unpasteurized foods, undercooked eggs and meats, and breads baked with active yeast. Water must be either distilled or boiled for 10 minutes and then cooled. Note: Most baby cereals these days contain active bacterial cultures. Check the labels carefully and only feed your child those that do not have active cultures. This is something we only found out recently, and unfortunately, we had been feeding her yogurt (her favourite food) and cereal with active bacterial cultures in it until we found this out by our own research.
  
• Have visitors take their shoes off before coming in the house
• Avoid contact with pets
• Watch patient closely for fever. A fever in a neutropenic patient needs to be investigated immediately.
  

This is not meant to be taken as medical advice. Please consult a medical professional for advice on treating a person with neutropenia.

Menu Plan Monday (October 18, 2010)

Most of our meals this week will be really quick and simple to prepare. Hopefully this will leave more time for me to paint our spare bedroom, get a couple projects done, and maybe work on another sewing project. Here's the plan for this week:

Sunday, October 17
Brunch: Buttermilk Pancakes, Scrambled Eggs, Fruit
Supper: Grilled Cheese Sandwiches, Easy Homemade Tomato Soup

Monday, October 18
Chicken Parmigiana (freezable, too!), Spaghetti, Caesar Salad

Tuesday, October 19
Breaded Fish Fillets, Baked French Fries, Coleslaw

Wednesday, October 20
Taco Salad

Thursday, October 21
Leftover Taco Salad

Friday, October 22
Homemade Pizza with No Rise Homemade Crust

Saturday, October 23
Leftover Pizza

Baking/Other for the Week:
Soft Gingersnaps

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

Chicken Parmesan (Easy and Freezable)

I don't know where I came across this recipe, but it is simple and tastes fantastic. It is also freezable.

Chicken Parmigiana

1 1/2 pounds chicken breasts (about 3-4 large)
2 eggs
1 tsp salt
1/4 tsp pepper
3/4 cups bread crumbs (seasoned, if desired)
1/2 cup oil
32 oz tomato sauce (or just use a jar of your favourite pasta sauce)
1/4 tsp garlic powder
2 tbsp butter
1/2 cup parmesan cheese (grated)
8 oz mozzarella cheese, sliced or shredded

Pound chicken breasts until about 1/2 inch thick. Combine lightly beaten eggs, salt, and pepper. Dip chicken into egg mixture and then bread crumbs. Heat oil in skillet until hot, and then quickly brown chicken on both sides until no longer pink, and then remove to a shallow baking dish. Stir tomato sauce and garlic powder into skillet, heat to boiling. Simmer 10 minutes until thickened (You can probably skip this step if using pasta sauce out of a jar). Stir in butter. Pour over chicken, sprinkle with parmesan cheese, cover with mozzarella cheese, and cover with foil. Bake at 350 F for 30 minutes. Remove foil and bake 10 minutes longer. To freeze, do everything except bake. (So, cover with foil, and then freeze). Serve over spaghetti or other pasta.

*My Edit Nov. 15, 2011 --> Try baking at 350 for 30 minutes instead of pan frying, to save calories. Then, cover with sauce and cheese and freeze.

Printable Grocery List
*linking up to Raising Homemakers

Easy Homemade Tomato Soup

I guess this isn't technically "homemade" as in making it completely from scratch, but I personally think it beats the plain condensed tomato soup from a can.

Easy Homemade Tomato Soup

1/2 small onion (about 1/3 cup), chopped
2 Tbsp butter
1 28 oz can diced tomatoes
1/2 tsp baking soda
pinch of sugar
1 cup chicken stock (I use 1 cup hot water plus 1 tsp Chicken in a Mug flavouring)
1/3 - 1/2 cup cream

Melt butter in saucepan. Add onion and saute until clear. Add diced tomatoes, baking soda, and chicken stock. Bring to boil and then simmer for about 15 minutes. Remove from heat. Heat cream on medium power in the microwave just until hot (not boiling). Add cream to soup and blend with an immersion blender until desired consistency. Serve.

*Note: Today, I accidentally used a 28 oz can crushed tomatoes instead of diced tomatoes. So, I used 2 1/2 cups of chicken stock instead of 1 cup, and it still turned out just fine!*

Buttermilk Pancakes

When Little Bittles was sick and in and out of the hospital, we ate a lot of pancakes because I just didn't have the energy to cook anything else. We tried out a few different recipes, and this is one of our favourite ones that I modified just a bit.

Buttermilk Pancakes

1 cup flour
1 tsp salt
1 Tbsp sugar
2 tsp baking powder
1 tsp baking soda
1 egg
1 cup buttermilk (or use 1 Tbsp vinegar + enough milk to make one cup; let sit for 5 minutes)
1/3 cup oil

Mix together and spoon into hot skillet. Flip when bubbles appear on top.

Caramel Popcorn

I just made caramel popcorn for the very first time yesterday. Today, all of it is gone. Most of it was gone yesterday, but after breakfast (yes, caramel popcorn for breakfast) it was all gone. This stuff is seriously amazing. I will probably never try another caramel popcorn recipe because I am convinced there is no better one out there than this one. My husband, who doesn't even like caramel popcorn, could not get enough of this stuff once I finally convinced him to try it! I found the recipe for it here at Raising Homemakers. I cut the recipe in half (using 10 cups of popped popcorn, which was exactly one batch using my air popper).

Yum-A-Setta

Here's a very simple, yet just plain good casserole (albeit not all that pretty to look at). I found the recipe for it in a church cookbook and altered it just slightly. It tastes like a homemade version of Hamburger Helper. I like how easy it is to throw together. We had it with corn on the cob.

Yum-A-Setta

1 lb ground beef (the recipe called for 2 lbs, but that would be wayyyyy too much meat for us)
1/2 small onion, chopped
Salt and pepper to taste
1 tbsp brown sugar
1 10 oz can tomato soup (not diluted)
1 10 oz can cream of chicken soup (not diluted)
1 16 oz (340 grams) package of egg noodles
1 8 oz Velveeta cheese (I didn't have this so I just used processed cheddar cheese slices; I'm sure you could just use shredded cheddar, too)

Brown ground beef with salt, pepper, brown sugar, and onion. Add tomato soup. Mix well and set aside. Cook egg noodles and drain. Add cream of chicken soup to the noodles and mix. Layer ground beef mixture, noodle mixture, and cheese in casserole dish. Repeat. Bake at 350 F for 1/2 hour.

Gradual Improvement

We had some more good news today. Little Bittles is still gradually improving. She had blood work done today and her neutrophils are up to 8 % (they were 6% last week) and her platelets are down a bit more this week, too. This is very good news as the results show she is improving and going in the right direction. Unfortunately, we still have to remain in isolation (especially from large groups of people and anyone with symptoms of illness, including colds and flu). This is because although she is improving, 8% is still very low for neutrophils, which leaves her very susceptible to infections (and us all with a bad case of Cabin Fever!!). If she did catch something now, it would really set her back, especially because she is allergic to the best antibiotics.

The doctor said today that she may even be normal in 3-4 weeks. Her night sweats have disappeared and her mouth sores and diaper rash are drastically improved. Her sty infection in her eye is also nearly gone. A few of her virus tests came back, and so far they are all negative (negative for rubella, Epstein-Barr virus, and Parvovirus B19). We are still waiting for the results for cytomegalovirus. Our pediatrician did some research and found some cases that presented identically to Little Bittle's and were virus-induced. It is now not likely that she had Kawasaki Disease, but rather it is more likely this was virus-induced. We may never know what specific virus it was as there are so many out there. She will get weekly blood work done and stay on the aspirin for at least 6 more weeks.

We are SO thankful that there is likely nothing more serious going on and she should make a full recovery (it just may take some time). We just ask that you keep praying that she will continue to improve (even quicker than expected) and that she will stay infection-free. Our sincerest thanks for your prayers.
Glory be to God for His hand of protection and healing.

Menu Plan...Wednesday?

Ever since Bittles got sick, my menu planning and grocery shopping has been toast. Literally. And pancakes. A lot of pancakes. I was so tired and stressed all the time that I seriously couldn't pull myself together enough to get a half decent meal on the table most of the time. Plus, we spent several days in the hospital, too, so we were eating a lot of fast food and take-out. Anyway, this week I feel like I am back to some sort of normalcy (for now), so here's what we have been/will be eating this week.

Monday, October 11
Homemade Pizza, Carrot Sticks

Tuesday, October 12
Yum-a-setta (this is like a homemade version of Hamburger Helper - recipe to come), Corn on the Cob

Wedneday, October 13
Leftover Casserole (Bittles has her Dr. appointment today)

Thursday, October 14
Crockpot Teriyaki Steak (new sauce), Stir Fry Veggies, Rice

Friday, October 15
Tortellini in some sort of sauce (not sure what kind yet)

Saturday, October 16
Homemade Tomato Soup (you'll have to scroll down for the recipe), Grilled Cheese

Update on Bittles and A Few Random Things

Okay, here's a random post for you all. Topics I'll cover include update on Bittles, weird lump on my leg, Thanksgiving weekend, and something you should never say when you book a doctor's appointment.

Some of you only read this blog for updates on Little Bittles, so I'll start with that so that you can read that and then skip the rest if you want.

Bittles (if you haven't figure this out already; this is our bloggy nickname for our 1 year old daughter.) seems to be doing fairly well right now. On Friday, she developed a sty in her eye (likely caused by a staph bacterial infection), which we kept a close eye on. We decided to just wait it out and see if it went away rather than see the doctor about it. I read on the internet that often neutropenic patients have to go on antibiotics for something as common as a sty, but being Thanksgiving weekend, we decided to just wait. Of course, a sty would normally be of no concern, but with her severe neutropenia, any infection can become serious quite quickly. Besides that, it's next to impossible to keep a one year old from scratching her eye and then touching her nose, lips, mouth, etc. and spreading the infection. Then on Saturday I noticed she had a red mark under her nose and her top lip was a bit swollen. Of course, I immediately started wondering/worrying what caused this (did the infection spread, did she bump herself, etc). Things I would normally never think twice about, let alone even notice cause me concern these days. In the middle of the night when I got up with her, I was convinced it had turned into a blister, but in the morning, I decided I must have been seeing things in the night because it looked no worse than the previous day. Today (Tuesday) she still has the red mark under her nose, but now I'm thinking she probably just bumped it or something. Her top gums still look redder than normal, which is probably due to the neutropenia. This morning I noticed she still has a few sores in her mouth but I think they are healing and they do not look nearly as bad as they did a week ago. Her diaper rash seems to be better again, thankfully. Tomorrow she goes for more blood work and she will see her pediatrician. Please pray for good results tomorrow. Specifically, pray that her neutrophils would be significantly improved (even up to normal) and that her platelets would be down to normal. Thanks again for praying!

Now for some random updates and thoughts.

So...yesterday I woke up with a tender spot in my calf. Upon further investigation, I discovered a lump underneath my skin, which hurt when I touched it. At first, the lump wasn't all that big (maybe pea-sized or a bit bigger) but as the day went on, the pain got a bit worse and the lump grew to about the size of a nickel. The pain was not just in the lump but also in the surrounding area. By the evening, there was a red mark on my skin at the same place the lump is. So, I rack my brain trying to think if I bumped my leg in the night (some things do go bump in the night, you know) or what could possibly have caused this. After looking some stuff up on the internet (someone like me who is, of recent, suffering from paranoia really shouldn't try to self-diagnose using the internet - "oh no, I hope I don't have that", "wait...what if I have that!" LOL), I decided that I really have no idea what it is, but it probably isn't anything that needs emergency medical attention. Although I cannot remember bumping my leg in the night, with all the sleepless nights I've had lately (as in, the past 13 months!) :-), I cannot trust my memory or my brain to think clearly. I decide that strange lumps and bumps should probably be checked out by a doctor, so I call my doctor's office to book an appointment, which brings me to my next topic...

Things you should never say when you book a doctor's appointment.
" Hi, I am calling to book an appointment with Dr. ____. Oh, you don't have anything open for 2 weeks. Okay, is that the earliest available? What if it's something medical?"
...WHAT!? What if it's something MEDICAL? As in, pertaining to the field of medicine?? Well then I suppose I've called the right place. Now I am embarrassed beyond belief of my absolute stupidity in saying that, and I really hesitated to even share it because I am so seriously embarrassed, but I decided to share this with you because I hope it will cause you to laugh. At least then I can feel somewhat better about myself and my big-time blunder. Don't ask me what I was thinking when I said that because I wasn't (thinking, that is). Basically, I was so surprised that I couldn't see a doctor for at least 2 weeks, that I just didn't know what to say (Listen to me trying to justify my stupidity - Ha!) And, please tell me I did not then proceed to book the appointment and give them my name. How the receptionist didn't burst out laughing is beyond me! Seriously, I need to get some sleep. My brain is turning...make that, has turned... to mush and I have decided it is not safe for me to 1) phone anyone 2) drive anywhere 3) cook anything using the stove.

By the way, we had a nice Thanksgiving weekend. Unfortunately, we had to miss our niece's 1st birthday party (due to Bittle's being in isolation still, we have to keep her away from large groups of people or people with any symptoms of illness). We did stop in for a minute before the party just to say Hi and drop off a present. We also stopped in the field to say hello to my husband's family, who we have hardly seen this past month due to Bittle's sickness. Then, we went out to my parent's place for a gluten-free Thanksgiving dinner, which was very good. I even got to soak in their new hot tub for a few minutes, which was nice.

Well, that's about all for now. I am off for a nap (a much-needed nap). Hopefully with the nap will come some increased brain function. :-)

Happy Thanksgiving

Today I give thanks to God for several things. These are just a few:

• Spending Thanksgiving at home rather than in the hospital
• Beautiful fall weather
• Food to eat, a house to call home, clothes to wear, clean water to drink
• Little Bittle's is infection-free so far and seems to be getting better
• A loving husband (he even bought me my favourite hazelnut chocolate yesterday as a surprise!)
• A beautiful daughter
  
• God sending his only Son to die for my sins that by faith in Him I have eternal life
• God's faithfulness and mercy
  
• Wonderful family

Remembering mine affliction and my misery, the wormwood and the gall.

My soul hath them still in remembrance, and is humbled in me.

This I recall to my mind, therefore have I hope.

It is of the LORD's mercies that we are not consumed, because his compassions fail not.

They are new every morning: great is thy faithfulness.

The LORD is my portion, saith my soul; therefore will I hope in him. Lamentations 3:19-14

O give thanks to the LORD, for he is good: for his mercy endures for ever.
Psalm 107:1

Praise God for Some Good News Today

Praise God! For the first time (in what feels like a very long time) we had some good news back from the blood work. Today, Little Bittle's neutrophils were up to 6 % (still really low, but the highest they've been since this whole ordeal began and I think this puts her just bordering severe/moderate neutropenia). Her platelets were down from 920 to 633!! This is still higher than normal (shouldn't be above 440) but a definite improvement. Also good was that her c-reactive protein was normal, which indicates there is no inflammation going on in her body. I think that is a sign that there is no acute infection in her body right now. The doctor sounded quite confident that this has been virus-induced and that she is on the road to recovery. Also, the sores in her mouth look better today. Praise the Lord! Now, here's a very neat thing. My husband and I both had a feeling that today was going to be good news. Here's why:

• Last night the strangest thing happened. I felt like I was awake all night, totally restless, and could not sleep. I kept waking up thinking "God is going to heal her tonight. Tomorrow is going to be good news." Here's the thing. I don't know if I was actually dreaming or if I was awake. I have no idea. I feel like I was awake the whole night thinking this, but I don't remember being awake at all. It was like this message just kept repeating over and over. This morning when I finally did get up, I wasn't sure if God had been speaking to me or if I was just making this all up in my head. I am pretty confident God was speaking to me because of the strange state I was in all night - not really dreaming nor sleeping.
• Last night my husband was reading the book of Job and how God allowed nearly everything to be taken away from Job but in the end, God blessed Job with even more than he had in the beginning. My husband really felt that even though our daughter has been extremely ill these last few weeks that God was going to restore her and use this for more blessing and for His glory.
  
• My husband and I were also thinking today (He was thinking it at work, and I was thinking it at home) of how our daughter's name specifically means "God answers prayer" and just how significant that is. We have had complete confidence this whole time that the meaning of her name was going to hold great significance in this event. We just weren't exactly sure how God was going to answer our prayer. It is so interesting to us that when we named our daughter, God knew just how important the meaning of her name would be. We never anticipated something like this happening, but God knew. What a great testimony this is.
  
• Today I was trying to pack our bags for the hospital in case we got sent to see a specialist. The thing is, every time I went to pack, it seemed like the Holy Spirit whispered, "You don't need to pack your bags. It's going to be good news." So, I would stop, do something else, and then go back to pack again. But then God would whisper again, "You can pack if you like, but you aren't going to need those bags." Next time it was, "Ye of little faith. It's going to be good news today." No, the voice was not audible but rather whispered to my heart. There were times during the day I doubted and would pack a few things here and there, but I just felt so unsettled the whole time like I really didn't need to pack.

In the day of my trouble I will call upon thee: for thou wilt answer me. Psalm 86:7

**Thank you, thank you, thank you for praying. Please keep praying she will continue to heal.

Join us for Gratituesday at Heavenly Homemakers! (Yes, I know this post was written on a Thursday!)

Back to No Diagnosis and More Tests

As of yesterday, we have no diagnosis for our daughter. Our pediatrician at home here says that he no longer thinks she has Kawasaki Disease. He said it's still possible, but at this point we are to assume that we have no diagnosis for her yet. He said he has seen numerous cases of Kawasaki and our daughter's symptoms and condition just don't quite fit.

We had another crazy weekend with two trips to the E.R. (in 2 different cities) after we found a strange lump/bruise on her chest. Not having a clue what it was and worried about aneurysms/blood clots/bleeds, etc. we took her in. We weren't sure if it was anything urgent, but with all the strange things that have happened with her, we didn't want to take a chance. Better to feel stupid for bringing her in with just a bruise than to feel stupid wishing we would have done more. The doctors we saw in the E.R.s had no idea what it was. They suspected it to be a bruise that had calcified or a cyst, but basically they said it was very strange. We got home at 4 a.m. on Monday morning, and my husband had to work in the morning. We were crazy tired.

We decided to take her to the pediatrician on Monday (yesterday) evening just to get her checked out again because I noticed she had another sore in her mouth again, this mysterious bruise/lump on her chest, red spots on her neck, she was not drinking anything, was quite pale, and sweating a lot at night. We have been told that if anything strange appears/happens to see him right away.
(Can I just say - I am SO thankful for our pediatrician here! He is amazing as far as doctors go. He is not satisfied to just "guess" at what she has when she isn't really getting better and her blood work is still not good. He is really trying to get to the bottom of this all)

He checked her out again and told us that the bruise/lump on her chest is a skin bleed. BUT...he is somewhat concerned because he believes it might have happened spontaneously. That would be a very bad thing. He said it's possible she hurt herself, but at this point he is going to consider that it could very likely be a spontaneous bleed. He really wants us to see a hematologist if this doesn't sort itself out quickly. He also said that she has a really bad mouth sore and it is extremely painful for her. That is probably the reason why she is not drinking. He told us to be VERY careful to keep her away from infections and sick people. We also are to keep a very close eye on her for more strange bruises. So, she's getting more blood work done on Thursday (poor girl, her arms are black and blue from all the pokes), and then we are going to go from there. This way, our pediatrician said he will have time to get us to see someone, send us for more tests, or figure something out before the weekend. If her blood work isn't better on Thursday, I'm pretty sure we'll be off to see a hematologist asap. Please keep praying for her. They don't know what's going on yet. It's still possible it's a virus, but if it is, it's really doing a number on her. I'm afraid this could turn out to be even more serious than we imagined. We just don't know yet.

As parents, we cannot tell you how hard it is to have your child go through all of this. I am trying not to worry, but it is very difficult. This is by far the hardest thing we've even been through. Yesterday morning I was not doing very well (emotionally, physically, mentally). The worry and exhaustion caught up with me, and I cried my eyes out. I feel like I can't sleep, can't eat, can't do anything until we figure out what's going on. Today I am doing better. I am still tired, but I feel better overall. This has been an emotional roller-coaster. We pray every day that Jesus will heal her, according to His will. I was talking with my good friend yesterday who told me that her husband said, whatever happens, God will get the glory for it. Though we don't understand why this is going on, we know there must be a reason - that reason being that God will glorify Himself through this. We just aren't sure how this is all going to work out yet.

We cannot tell you how grateful we are for all your prayers. We know there are literally hundreds (possibly even a thousand) people praying for our daughter through this all. We overwhelmed by your support through this all. Please know how thankful we are for all of you.

Home Again But Still Confused

We're home (again!). Hmm...where to begin? I feel frustrated, nervous, uncertain, and VERY happy to be home. They discharged us out of the hospital today because there is basically nothing that the doctors feel they can do for us at this point - we just have to wait. Our daughter's diagnosis is still unclear. We were basically told the exact same thing we were told in the very beginning. She might have Atypical Kawasaki Disease. But it was made clear that honestly, the doctors don't know what's going on for sure still, but they sound optimistic. It's still possible this was all caused by a virus (an unknown virus at this point. Her test results for certain viruses hasn't come back yet). Kawasaki can also be triggered by a virus from what we were told. Unfortunately, we did not get to see a Rheumatologist while we were up there because he was gone this week.

Thankfully, her echo-cardiogram came back as normal and the cardiologist said her heart is normal. This is good news as Kawasaki Disease can cause heart problems.

This morning's blood test showed her platelets to still be abnormally high (920) but lower than they were 2 days ago (950). Her neutrophils were still very low (4.5 %) but higher than 2 days ago (2 %). She's on half a baby aspirin to prevent clotting due to the high platelets. Other than her blood tests, she appears to be in fairly good health overall. I was a bit concerned because she has some patchy raised spots on her body that I was pretty sure weren't there yesterday, so her skin still does not look great (in my opinion, it looks worse than it did a few days ago). She was also having more bowel movements than usual yesterday (5). She has a red line on the side of her tongue that looks a little sore. These were all brought up with the doctors, but at this point they are not really cause for concern.

I am pretty sure that our daughter's condition is a complex and somewhat confusing case at this point. I think they sent us home to watch and wait because there was really no point in staying in the hospital right now as we basically are just waiting to see what happens next (gets better or worse) and what her next blood test will show. I do not disagree with their decision to send us home, (although I would have really liked our daughter to see a Rheumatologist, but unfortunately the one we were hoping to see was gone this week). There is no reason why we cannot "watch and wait" at home. If something changes, we see a doctor right away. For this reason, I am happy to be home with her. Additionally, we REALLY like our pediatrician here at home and trust him a lot. He has proven himself to be very competent and caring. In fact, the very first time we saw him he mentioned to us that she may have Kawasaki Disease but maybe an incomplete form of it since she was not displaying a few of the classic signs. Turns out, after seeing several other doctors that this is still the tentative diagnosis. Our pediatrician here at home spent hours setting things up for us to see another doctor and to get us to see a cardiologist asap. I cannot say enough good things about him. He truly cares about his patients and tries his best to figure out what's going on.

Truthfully, I am still extremely nervous. We got the impression that the doctors are optimistic that she'll be alright, but there is a lot of "unknown" at this point. The "unknown" part is what's scary for us. Last time we waited at home for her to be tested again, the test results were a lot worse and we got sent to another hospital. We really didn't see that one coming, so that's why I am more nervous this time around. We will see our pediatrician and do another blood test next week sometime.

I am the type of person who would like a clear cut diagnosis. A yes or no. This maybe/maybe not/ "wait and see" stuff has shown me that I need to work on being patient and I need to trust God more! The human body is very complex and sometimes things are just not that clear cut. Doctors are only human; although they know a lot, they do not know everything and we cannot expect them to always have answers. Medicine has come a long ways in the last hundred years or so, and I am thankful for all that they have been able to figure out so far.

Obviously I cannot tell you just how much we love our daughter. It's hard to not be over-protective of her. It's hard to not be obsessive about keeping her in a little bubble until her neutrophils get better. It's hard to know whether or not to probe for more answers or to just accept how things are for the time being. It's hard to sleep at night because I'm worried something might happen to her. It's hard to hear her cry and scream from being poked and prodded so much these past few weeks. It's hard to tell her "no" and properly train her instead of letting her get away with whatever she wants when she's been through a lot and she's not healthy yet. It's hard not knowing what's going on.

Thankfully, I do know One who does know exactly what is going on. I really just need to let go and let God. This whole thing is definitely stretching my faith. That part is good. I have been depending too much on my own strength.

Still Not Sure What's Wrong

Just a quick update as to our little girl's medical situation. Yesterday morning we were admitted to a hospital that deals more specifically with more complicated pediatric issues. At first, we were absolutely confused and clueless as to what was going on, where we were supposed to be, who we were supposed to see, etc. It was kind of chaotic and overwhelming.
When we first got to the pediatric ward, I bumped into one of my husband's old classmates who switched into medicine and used to go to the same church as us. I think he's in 4th year medicine (or just finished), so it was nice to see a familiar face and chat for a brief moment.

Yesterday What Happened:

Complete medical history taken
Saw a couple resident doctors
Had an echocardiogram done
Knew our night R.N. from when we went to church up here (so, that was nice)

Results: Echo was normal so far (Praise God!)
Current on-going diagnosis (not confirmed yet) is Atypical Kawasaki Disease

This Morning:
Blood Work Done
Met Senior Resident Pediatrician: Said they are going to try to work out a plan of action today.
Neutrophil count is only 3% from this morning's work (this is not good)
Not sure about platelets and stuff yet
Her rash looks like it might be coming back
She has sores on her tongue and redder lips and gums
She does not look quite as good as yesterday. She's had several bowel movements (much more than usual, which is strange, too.)

Sorry for the disjointed post. I'm beyond exhausted. Not sure how much more of this all I can handle. This morning I'm feeling like I'm at a breaking point. Trying hard to not rely on my own strength (I have none at this point) but on the Lord's.