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Friday, May 29, 2009

I Don't Scrapbook...

It's not that I do not like the art of scrapbooking. I find it to be a very intriguing, creative outlet of storytelling. Those who have the ability to take printed papers, stickers, borders, letters, and pictures to tell a story to help others feel like they attended events are truly talented. However, I do not possess that talent. I have all the necessary supplies to try to create the masterpieces that could be known as "baby books." If you were to look at the two albums that we call "baby books" for my two children, you would think that they were still infants - twins maybe. I have only gotten to the parts in them where we have announced the arrival of our two blessings.

It's not that I don't have pictures. I have many pictures that show that my children are indeed eight and nine years old. I have more pictures of their younger years taken via the disposable camera, which were taken to the local photo printer and stuffed into picture boxes or generic albums for the sake of having them. I also have quite a few recent photos of my children taken digitally, which are loaded into my computers. I haven't done much with these pictures until now. I figured the photos would always be there for me whenever I wanted to go and look at them again. This last week I was looking through many of the pictures and remembering stages in my daughters' lives.

I am sorry to say that there are some years with not very many no pictures. We were just living life. I was often asked by family members about new pictures and always replied, "We don't have any new ones." I have always thought that pictures were for showing others what your family is like at its best (you know-matching outfits, well-groomed, all smiling). I have sometimes felt that my family is not "picture worthy" because we don't always look (or could be made to look) perfect. And, there are parts of my life that I did not want others to see, or even remember myself. I missed those pictures this week. I found myself wanting pictures of those years.

I am surprisingly discovering that pictures are not always meant to be portraits of perfect people. Pictures are documentation of the fact that we are living our lives. It's not about how we look. It is about how we are feeling and relating to the other people. The activity we are doing is a representation of that moment in time.

I was reminded by another blogger just recently that one day there will be a time when I will not be able to take pictures (perfect or otherwise) of my family members. I will only have my memories and the pictures that I have already taken during our lives together. I have also realized that some of the best pictures we have taken - especially most recently- have been those when we were just enjoying life together rather than "making a picture worthy scene."

This is also the reason I started writing this blog. There are some things that I need to remember. One day I will be glad that I documented my "ordinary life." I have realized that there are some pictures of events I wish I could have now because it is part of my story, even if I did not want to remember it at the time it happened. I am going to try to put these stories together into small posts throughout the summer to "fill in my blanks."

And, the bonus part of it being a blog is that I don't have to worry about which color paper to use, how the border should be placed, whether to use pinking or scallop scissors, if I have enough tape dots, whether my handwriting is neat enough or not, or if I have made any major cropping errors.

Thursday, May 28, 2009

Monica's Special Trip

Monica got her kitty face painting at school earlier in the day because it was field day and they played outside and got to do many different activities. For our special trip, we went to a jewelry store in the mall and we picked out the new special jewelry Monica wanted to wear. We spoke specifically with Whitney, the store clerk, about our new jewelry and how to take care of it once we made our purchase. Then, Monica still decided it would be OK to go through with the purchase.

She sat on Memaw's lap in the big special chair with her Hannah Montana Build-a-Bear.

Grandma was there too and gave her a hug.

Then, she hugged Memaw again.

Then, she hugged her bear really tight.

Then, they group hugged.

Then, Whitney clipped Monica's hair back.

Then, she cleaned Monica's ears.

Then, she marked the dots on Monica's ears. Aunt Lisa and I both made sure they were even.

Then, the jewelry was placed in the "kitty" ear first.

Then, the jewelry was placed in the other ear.

The final result of the second ear.

The final result of the "kitty" ear.

Finally, Monica got to look and see how much more beautiful she had become with her new jewelry.

The pictures are not very clear. However, the jewelry we picked out was a pair of 18 carat gold, pink, 5-petaled, flower earrings. They sparkled in my princess' ears. She was so delighted and even said, "It wasn't that bad."

Not that bad? My little girl, who screams bloody murder at the thought of anything that might hurt (splinter removals, anything requiring a band-aid and ointment, especially shots, you get the idea), GOT HER EARS PIERCED!! so bravely without shedding a tear or even wincing.

Friday, May 22, 2009

Happy Birthday, Monica!

Updated 5-28-09

Today is Monica's 8th birthday. I remember when she was born like it was yesterday. She was full of spunk - and still is. She likes to play and have fun. She likes to run, skip, hop, climb, bike ride, and spread her energy to others. I have needed a lot of this energy lately. Every time I get upset with her for exuding her spunky, active, and peppy self, she shows that she has a heart of gold and helps someone else. She has been helping me a lot lately. She gives the best hugs, smiles, and love that warms my heart like nothing else. She also does her best to help get me things when I need them and loves her sister with all her heart. She was so grateful to be with us in Indianapolis for the two weeks we were all there together. And, she helped us keep our minds on so many positive things in our life and not just on the circumstances we were facing. She has been this breath of fresh air in our family for 8 years now.

Anyway, to ease her from the bed this morning (without jumping on her, pulling the covers back, or spritzing her with water), I told her we could go and get some cini-mini's on the way to school if she got ready fast enough. However, she came to the kitchen and said, "No, I want this instead." I said, "OK!"

I even helped her scoop it. Yes, you are seeing what you are thinking. This was the breakfast of my little princess' dreams - strawberry ice cream. After all, today was field day at school (the second time that it has landed on her birthday) and she didn't have to sit still all day.Then, we got her dressed in her new birthday outfit, and headed off to school. She (and the dog) posed for me.

We are now getting dinner ready (Spaghetti) for our family that is coming over. Monica set the table herself - Of course, we got party favors for the event!

Complete with this balloon center piece!

It just wouldn't be an 8-year-old's birthday without "Hannah the Great!" now would it?

We have decided to go to the special place tonight after dinner. I am going to take special event coverage of this trip. Stay tuned for our next very special posting. This special trip was also inspired by "Hannah the Great!"

Thursday, May 21, 2009

Smiling for the Camera!

As we were waiting in the van for Monica after school, Megan was in quite a good mood. And, I decided to make good use of my new phone. This photo shoot was a lot of fun. My arm got really tired of holding the camera between the seats (we took about 30 pics). It sure was worth it!

Wednesday, May 20, 2009

My Girls!

Hey, Meg, say cheese!

Now, that's more like it.

Megan is continuing on her medications and antibiotics and seems in the best condition she has been since her hospitalization in April. We are still praying for continued improvement.

Monica will be 8 years old on Friday and I am planning a very special post for Friday and Saturday about what a blessing she is and photos from our special trip on Saturday.

Monday, May 18, 2009

Who Me? No, Not Me!

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else has not been doing this week.

Here are my stunning confessions for the week beginning with the fact that I was lamenting my Monday morning schedule until I remembered that today was "Not Me! Monday." This gave me the strength to get through my morning knowing that I could write this post (and actually post it on Monday) in my spare time after I got my kids ready for the day. Thanks, MckMama, for giving me something to be excited about this morning.

After my daughter needed to be hospitalized again last weekend and I wasn't even close to being caught up on my housework (laundry) and she needed transferred to her specialists 3 hours south of our home, I did not run home, pick out my favorite outfits (clean or not-mostly not), shove them into a bag, and run back to my daughter's room where the ambulance was already waiting. I also did not look at all the things I needed to bring and say to the ambulance driver "How much stuff can we fit into the ambulance? This bag? My suitcase? That bag?" All to which he did not reply, "You can even take that bag if you like." What a gem!

The next morning, I went to the showering facility in the sleep lab - that's where the hot water is. After preparing for my shower and running the water until it was warm, I realized that in my haste to pack a bag at home I had not brought any soap or shampoo with me. Did I panic? No! Someone else left their bodywash next to the sink and I did not say a prayer of thankfulness to God that this would not have to be a rinsing shower only. I was not so excited that I actually got to lather, rinse and repeat (if necessary). You may be saying, "Yuck, I would never do that, with all the germs out there!" However, since I do not regularly carry personal-sized hand sanitizer and lysol spray in my purse, it was no problem.

Later the next day, after talking to the doctor about my daughter's condition and feeling a little sad, I did not eat an entire 8-pack of mini candy bars in one sitting. And, when the nurse came to check on us, I did not grab all the wrappers and hide them really quick hoping she wouldn't see. She was so nice and pretended not to see me hiding my stash.

Finally, just this morning, when I could not find a brush anywhere, I did not just finger comb my other daughter's hair this morning before school because I didn't want her to be late. After all, we just got home from the hospital this weekend and we are giving IV antibiotics every 6 hours - in the middle of the night too. I certainly am not too tired to care about the location of our many hairbrushes. We got breakfast, vitamins, dressed properly, teeth brushed, and found our backpack. Who cares about hair that much, right?

There you have it. My week in a nutshell. If I ever get my act together, I won't be able to participate. So I think I will just bask in the fact that I am not perfect and keep my pencil ready to jot down all the things that I do not do this week.

Sunday, May 17, 2009

Silly Stuff, No Laughing Matter

I took Monica to Meijer today to pick up a few odds and ends. On our way home, during our short stop for cheese fries, we decided to listen to a CD while we waited. It is one that we haven't listened to in a long time. We thoroughly enjoyed this song, joined in, and laughed until we could no longer feel our lips.

Then, this story came on and I remembered how much I loved these guys and how uplifed I was when the girls were younger. Yes, God speaks to me through Veggie Tales too. I feel like little Davie right now. And, I am glad that I don't need fake armour or masks to get through my trials. I have been very guilty of trying to make it look to others that all of our family's trials are no big deal. I am very good at handling everything all by myself. I even took great satisfaction in showing how much I could do by myself because I thought it made me appear to be a stronger person. It just drained me and let Satan taunt me like the Philistines and Goliath. Well, I have only one thing to say about that now - "Goliath/Satan, you're just a big ugly pickle that I would like to crinkle cut and fry!"

Friday, May 15, 2009

Welcome to the Burrow Family Children's Hospital!

Medication? Check.
Feeding equipment? Check.
Oxygen and monitor? Check.
Nebulizer and breathing equipment? Check.
Suction? Check.
Tubes, wires, and lack of power outlet space? Check.
IV supplies, cotton balls, alcohol swabs, betadine....etc? Check.
Hospital bed? Check.
Being able to use and do everything that my daughter needs at home? Priceless.

We had a good day today, thanks to everyone's prayers - and my begging and pleading with God. There was no fever, vomiting, or crying. I had a very helpful visitor today. I got to sew for the first time since the beginning of April. I had lunch with my mother. My sister came with her husband and daughter.

And, Megan laughed all afternoon. It sounded like this (although this video was actually filmed in April while she was getting her vest percussion treatment):

Thursday, May 14, 2009

No Handbook

Remember when you had your first child?

Remember what you were feeling on the day you brought him/her home for the first time?

I'm not talking about the obvious sheer joy that comes with the knowledege that you were chosen to be the parent of the most beautiful person you have ever laid eyes on. I am talking about the healthy dose of reality that sets in the moment you realize you are responsible for this new life and that there are so many "things" to know and learn about being a parent and caring for your child. Some find it exciting (I did too, by the way), some are very serious, some are even - dare I say - frightened.

Some call their parents and pick their brains for knowledge, some read books, some take their pediatricians advice as absolute gospel, others just "wing it" (I am craving this skill today. If anyone has it let me know what the secret is). Anyway, I have done all of the above actions many times throughout my parenting career and I am still frightened. My parents do not have the answers, textbooks have been thrown out the window, pediatricians are stumped, and my only option is to pray for wings to pick me up and carry me through this uncertain time.

I have been doing a lot of reading about how other parents in situations such as mine are living their lives and handling their emotions. Emotions run rampant and it is physically draining even before mentioning the 24-hour care that I am responsible to provide.

All this is to say that we are coming home very soon. Megan's fever has been under 38 degrees celcius (that's the magic number - although 37 degrees is 98.6) for about 30 hours now. I pray that the fever continues to stay away even after the two weeks of the IV antibiotics are finished. Although, we are unsure how realistic this is. We have tried to change some dosages with her daily medicine regimen to try to help her tolerate her feedings and they are giving me a schedule for when she can have additional pain medication and how much to give. We are working out details with the home nursing care company in preparation for our homecoming as far as the 14 day of IV antibiotics are concerned. On the bright side, I am so excited to be able to see my family again and sleep in my own bed.

Please pray that I will feel more peace about our new regimen once again and that I will be able to complete the many necessary requirements of caring for my sweet daughter. I am feeling so very inadequate. But I love this little girl more than humanly possible.

Wednesday, May 13, 2009

Heartburn, Nausea, Indigestion, Upset Stomach...

This is our life today. We are having issues controlling secretions, tolerating feeds, and managing medication levels. The Dr. says that we will be able to bring Megan home when her blood cultures are negative for bacterial growth. We are uncertain whether or not the fevers are going to go away. The blood cultures taken yesterday have yet to show growth, but Megan is still having fevers daily. The doctors are beginning to think that her body is not able to successfully regulate her temperature right now. We do not know if this is permanent or will improve over time.

I want to believe so badly that Megan can maintain a level of health that will enable us to live a comfortable "status quo" life again. Questions have been raised today that make this dream seem like its worlds away. We have known for six years that Megan's ultimate diagnosis is for her body to fail and that she will live with our Heavenly Father until we are able to reunite. I feel honored to be Megan's mother and would like to have her as a part of our family for as long as possible without being broken and in pain.

Emotionally, yesterday was an up kind of day and today feels down. I want to scream "Calgon, take me away!" but may have to settle for a fresh bottle of the pink stuff.

Tuesday, May 12, 2009

The Plan: Short and Sweet

The Infectious Disease Dr. just left our room with this plan in place:
  1. Treat her UTI, ear infection, and central line bacteria with a 14 day course of Vancomycin. This should cover all the bacteria included with these infections.
  2. Monitor her fevers and discomfort.
  3. Culture blood samples from her central line until they come back showing no bacterial growth.
  4. If #2 & #3 happen before the 14 course of treatment is over and she is tolerating her feeding and home medication schedule, we will be able to go home and administer the rest of the IV antibiotics on our own.

Yes, you heard me right! There was no mention of surgery to remove the IV access and limp along again to get the rest of the antibiotics on board. My daughter's pin cushion status may be spared. Thank you for praying even before I told you what to pray for. Is typing my prayer wish the same as asking God for what I want? No matter - He answered anyway. As soon as I hit the "publish" button, the ID team was gowning up to enter our room with this marvelous plan. {Gown? you ask. Yes, one of the bacteria found in her urine only - not bloodstream was MRSA :( On the bright side, Meg will get a private room every time she goes to the hospital now and in the future :)}

So, if all these conditions are met soon, we will be on our way home again. Pray that this plan will go down without a hitch. I think this hospital is a wonderful place, but it is not my home and I don't want to be here if I don't have to be. Although, it does pay to be nice to the staff here and make friends. Look what the housekeeper brought me today -

It beats this hands down - all day long everyday!

Just Me and Meg

This picture of Megan and I was taken back in April. Do we look alike?
Anyway, Megan and I had a good trip to Indianapolis yesterday. We got settled into our room, the Dr.'s scheduled all her medicine as according to the schedule we had been keeping, they drew some labs, and we started preparing for the time we are going to spend here on the IV antibiotics. There is a question as to whether or not they will need to take out the central line or just treat her and the central line with the antibiotics until her blood cultures come back clean again. Either way, she needs IV access to complete the antibiotic treatment. If they have to remove the central line(which requires surgery), they still need to have some other access for the antibiotics. The way I understand it, they will not be able to put the same kind of line back in and definitely not in the same spot. The reason they placed the line in the first place is because every inch of her body was black and blue and she felt like a total pin cushion they had so much trouble keeping IV access and ran out of places to put them. Secretly, I am hoping they will be able to treat this line without removing it so that she can stay out of the operating room. This might mean a longer course of antibiotics though.

I am currently waiting on the Infectious Disease (ID) Dr. to come and discuss our best plan of attack on this superbug. I have plenty of questions lined up for this Dr., especially since they are taking so long to come see us. The longer they take, the more questions I can ponder. I'm ready for you ID!

Please pray that they come soon and we can get a plan mapped out that will help Megan improve and get us back to the rest of our family. (Ken, Monica, Kisses (our dog), and our 3 year old goldfish that the Lord fed for us during our 3 week hospital stay last month).

Twitter updates: For anyone wanting updates about Megan and I between blog postings, you can click the "follow me on twitter" link on the right sidebar. It has the last three updates listed already. The link will take you to a page that lists every short update I make. You do not have to have a twitter account to read all my updates - only if you want to have them show up on the account you are already using. They are listed by most recent post first. So, start at the bottom of the page from the last update you read and work your way back to the beginning.

Also, Ken and I will be tweeting each other during American Idol tonight. If you want to be included, @ me and I will give you a search code to place in your tweet so we can include you in the "twitter party/conference call." Yes, we are probably nuts! That's OK with us.

Sunday, May 10, 2009

"Not Me!" Monday

UPDATED: Oops- I am not such a newbie that I hit "publish" instead of "save" on Sunday so that the date of the post is actually Sunday and not Monday.

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else has not been doing this week.

I was not so excited about "Not Me!" Monday this week that I started a blog just to participate. And, I did not read every one of last week's Not Me! posts to my husband all the way to Indianapolis (a 3 hour tour trip) last Monday. And, I definitely did not stalk MckMama's blog to see when Mr. Linky appeared today. Who would do all that?

I also did not eat three packages of Skittles and drink only diet coke today for Mother's Day - That would definitely not be my favorite meal ever (And, I did not just call diet coke and skittles a meal!) Refusing to share said meal with my daughter would definitely be over the top - So I really did eat them in front of her - NOT!

Lastly, I am not totally excited that just writing this post has lessened my stress level because my daughter got sick on Mother's Day eve and have to be hospitalized for 10-14 new IV antibiotic days because of an infection. I am not secretly hoping that everyone on MckMama's blog will pray for my daughter too. Her name is Megan. She is the girl next to my husband in our "Orange for Stellan" family picture shown at the top right column that was not taken in our hospital room by our nurse too late to be included in the post that had too many pictures. (Which, by the way, I was not ever so proud to get so many compliments on the fact that we all matched each other and never took a better family picture than the one taken at that bedside. Certainly, not me!

Wow, that did not feel so incredibly good to get off my chest that I want to participate in Not Me! Monday again. Hopefully, I won't get the prize for the most lame confessions of a blogging newbie.

Happy Mother's Day!

Today is Mother's Day! I am proud to be the mother of two lovely young ladies! I am so thankful for another year with both of our children but am reminded once again of Megan's frailty - and the fact that we are able to add another holiday to our list of times of the year that Megan has been hospitalized. (And just why shouldn't I post that list? Stay tuned for this wild and wacky list!)

As I type this post I am sitting at Megan's hospital bedside again. Megan has been battling recurrent fevers as well as sinus, ear, and urinary tract infections all week. Yesterday evening, her fever spiked really high, was not responsive to Motrin or Tylenol, and she started crying out in pain. At the end of the options available to us at home, we took her to our local emergency room.

The doctors ran tests and admitted her pending the results. Today, we learned that she has developed a bacterial infection in the central line that was placed during her hospitalization in April. This means that she will need to undergo 10-14 days of IV antibiotic therapy to kill this bacterial infection. The blood cultures drawn from her arm (not the central line) have not yet shown any growth, leading us to believe that the infection is contained within the central line. So far, so good. Fingers Crossed!

Please pray that this continues to be the case and that she will be able to complete the antibiotic therapy without any additional complications. It feels like her body has been preyed upon by so many "opportunistic bugs" this spring. Hopefully, this treatment will help rid her of the neverending fevers and help strengthen her immunity in preparation for her release.

Thursday, May 7, 2009

Welcome to "Our Special Needs Life"

Our family life began with Ken and Lori. We were married and started our journey together in August 1996. Our first daughter, Megan was born in October 1999 weighing in at 7 lbs. 5 1/2 oz. Our second daughter, Monica, was born in May 2001 weighing in at 8 lbs. 9 oz. We were excited to have our two girls born close together so that they could become close friends and enjoy one another throughout their lives. However, shortly after our second daughter Monica was born, we began to realize that some red flags that we raised concerning Megan's development would highly impact our family's daily life as well as how we each relate to each other, the world, and to God.

Our plans for living our lives "the right way" with two amazingly well-behaved girls (effortlessly, of course), loving our jobs, providing a nice home, and seamlessly pacing through all the major stages of life together - CHANGED FOREVER!

The more we learned about our daughter's condition, the more our lives instantly changed until we had no choice to simply put everything we trusted in completely over to God. It seemed that no aspects of our lives were safe from the effects of our daughter's illness. When you have a child with a serious illness, the whole way you think, live, and breathe is different. You view the world from a completely different perspective. And, some days, it feels like the world also views your family from a completely different perspective.

Our prayer is for that everyone who reads the words on our site may be encouraged, uplifted, amused, informed, and delighted all to the Glory of God who made us, with no mistakes! It is only by His grace that we all get up every day, face the challenges that come with pride, and live as a steward of His love to the rest of the world. For our success is not in what we accomplish throughout our lives but how we go about our lives being thankful for everything we are given and teaching others to praise amidst whatever circumstances may present.

Please enjoy our thoughts, antics, advice, information, and family history knowing that we are taking this journey together, one step at a time. We LOVE to hear comments, stories, suggestions, clarifications, and situational humor from our readers who consider themselves "Special Needs Families" as well.