Sunday, March 28, 2010

The Big Reveal...

Merikalyn's bandages were removed yesterday morning, and we expected to see a large shaved area, but they had only shaved a thin strip along where they "went in". All the other children on our floor seem to have missing patches, so I'm wondering if Merikalyn really pulled at the Neuro's heart strings when she cried in front of their team when we talked about the hair situation.



Merikalyn's hair is really, really thin, so even when it is all pulled back, it doesn't completely hide the scar, but it definitely makes it less noticable.

Yesterday afternoon, she took a good peek at it in the bathroom mirror and returned sobbing. I felt so bad for her. Of course, I think she looks gorgeous and the scar is even kind of cute on her (and will likely heal nicely.. and over time, you won't even notice it, especially as she grows).

In an effort to cheer her up, my brother and my husband put on Disney Princess wigs..



Hmm, I think their Prince would have likely run the other way when they showed up to the ball. What do you think? This definitely gave Merika a giggle!

She was a mess for a while, but a bunch of guests (with kids!) showed up and before long, she was back to her cheerful self.

She was very "uppity" yesterday, which we were excited about. Her voice was stronger, she smiled a lot, played with stuff.. and just was more herself.

My parents watched her and our niece, AJ, while we went out with my brother and his wife for some good ol' crawfish and boudin. Unfortunately, I threw everything up when we arrived back at the hospital. I haven't had to fight the nausea to hard this pregnancy, but sometimes it hits and I can't control it!

We've had many visitors since we've been here- and we just feel so blessed. We are a fortunate family, I'll tell you that. God has been more than good to us. Merika began receiving the first few hats and headbands that people have told us they are sending, and she cannot wait to wear them. (She has to wait because the stitched area needs to really seal and heal... we are not suppose to cover it up.)

We cannot wash her hair until Thursday and that is driving me NUTS! She doesn't have super oily hair, thank goodness, but you know... it just begins to look stringy and ratty after a while.

We all really miss the boys, and I know when they get back they are going to go crazy over all the cool toys and gadgets she has been blessed with by friends and families. Yesterday, her cousins (The Joneses), came and dropped off a gift of a Nintendo DS and three games from them and some family friends (The Bellos). It was incredibly sweet and I KNOW the boys are going to want to play with it when they come back from MawMaw's (who cares that it's bright pink and all the games are girlie!). We were really surprised by such a generous gift! Uncle Chip had to show her how to use it.

I can't wait to have our family "back together" again, but we know that, for now, it's best that we just focus on Merika. The boys are having plenty of fun in Louisiana and are able to get the attention they need as well.

Brandon and I are doing great. We have such a great support system... we're just really, extremely blessed.

Friday, March 26, 2010

Post Surgery

Sorry I didn't update sooner. Today was uneventful- the first uneventful day since all this started.

Merikalyn's surgery went very well. She went in at 2pm. It took about an hour for them to prep her, and surgery officially started around 3pm. We received updates about every two hours, which was wonderful. I expected time to drag by, but it actually flew by. We had visitors most of the time, starting out with my husband's mother and friends and our two little boys, Nolyn and Keagan. They left after a bit and headed back to Louisiana (taking the boys with them so they wouldn't be bounced around from place to place). My Granny came (my Dad's Mom), and she, Brandon, and I all had burgers in the cafeteria (they have awesome burgers). When we returned to the surgery waiting room, we had one of Brandon's bosses waiting there for us! Scott is very friendly and outgoing, and he definitely helped the time pass quickly!

Of course, after every update, Brandon, myself, and my dad had to make a few calls to different people to keep them updated on the situation.

Halfway into the surgery they sent a few pieces of the mass to the pathology lab. Pre-surgery, they were pretty positive that it was a tumor and were just waiting to find out what sort of tumor it was. During the surgery, they found that the mass was about the same color and texture as the healthy tissue, so they had to go by coordinates from the MRI to remove it. (They knew it wasn't the healthy tissue because, in the MRI, it's a different density.) They saw the sagging on the left side of her face improve immediately during surgery, which is awesome.

However, they had NO idea what this mass is- even after the "quickie tests" from the pathology. This is not good or bad news. It's just.. not news at all, really. It could still be a tumor, or it could be an infection, or a number of other things. They hope to be able to give us a full report Monday night or some time on Tuesday.

I asked the Neuro if he had seen anything like it, and he made the comment he had seen something similar and it turned out to be MS, but he doesn't think this is MS for several reasons (which I have forgotten, so forgive me).



She had another MRI yesterday to see how much of the mass was left. A third of the mass remains. Depending on what the mass is and what sort of treatment is required, they may not have to perform surgery again. (Btw, this surgery is called a craniotomy.)

We are hoping they won't have to, as the recovery is very difficult on all of us. Merikalyn has not done much smiling today, even though she received a bunch of wonderful gifts from family and friends.

Today's day shift nurse was a total dud, which definitely didn't help things. My husband told the night shift nurse about her (this night shift nurse is wonderful!) and she said she would report it and make sure we didn't receive her again.

I often wonder why people with no cheer or personality do jobs like this. These children (and their families) NEED a positive, upbeat spirit.

Our Neuro stopped in and was flabbergasted by her neglect. (Merika didn't receive any breakfast and hadn't received the pain medication we asked for hours previous.) Numerous times we had to have her paged and she didn't come for 45 minutes or more... even when it was a serious ordeal (Merika became very nauseated and began heaving).

We are hoping tomorrow will be better for Merikalyn. We miss her smile and her laughter. My sister-in-law hung out with us all day today, which was really nice. It can get rather boring around here (earlier, when I mentioned this, my husband said, "WELL THAAANKS! I see how you feel about me!" Ha!).

A woman from our church came by with a bunch of handmade cards and a big banner from the kids in the Awana group (it's a fun little "club" they do on Wednesday night).

I often wish I could see all the people who are praying for us. News has spread so quickly and we have received emails and messages from people we don't even know telling us how Merikalyn's life touched them in some way. Our friend told us that there is a church in Africa praying for us!

I am just amazed by the amount of support we have, and SO thankful for it. I don't know how people make it through without it. We have really been able to stay upbeat and positive, and I'm not sure we could do that if we didn't have so much love flowing our way!

One of my cousin's little daughters (Brianna) wanted to do something special for Merika. She knew Merikalyn loves the Disney Princesses, so she wanted to send Merika her Belle costume (from Beauty and the Beast- which comes with a purse and wig!). It was one of the sweetest things.. and she sent her a dollar too. :) SOOOO sweet and thoughtful. It made me tear up for sure! My grandma found out about this before we received it and bought her a Belle barbie doll to match!

I cannot wait until she is better and feels like playing with her toys. Although I could see twinges of thankfulness, I wonder if she will be surprised all over again at the things she's received when she's more alert.

The boys are doing extremely well in Louisiana. We talked to them on the phone today and Keagan jabbered on and on. He told me, "Yi wub yew!" and "Miff you Mommy!" Nolyn always sounds so grown up on the phone, but he has an unusually deep voice to begin with. We also got to speak with our nephew Hunter. They are having so much fun at MawMaw's and I hear she is weaning Keagan from his pacifier (which we have slowly been doing) and may try to potty train him while he is there (oh man, that would be nice...). We all miss Nolyn and Keagan... and wish they could be here, but we know that they are in good hands with MawMaw and PawPaw!

Our doggy is being taken care of in Louisiana as well with our friends John and Ashley. I hope she is behaving!

Brandon and I are doing good. People keep telling us we are so strong, but I just don't see it that way. We really have a peace about the situation because we know God is in control. We also know that prayer is powerful and we have hundreds of people praying for us. We have been able to see glimpses of how God has used this situation in our lives and the lives of others (friends, family, and even strangers) and it has been amazing. When it comes down to it, we're not here on this earth to live long, healthy lives. We are here to bring glory to God.

I look back over the last few weeks and feel so bad for how I treated Merikalyn. Previous to the seizures, I thought her behavior was due to pure disobedience and not paying attention, and so I got on to her numerous times and became very frustrated. Now I realize that she couldn't even help it- it was one of the effects of the mass (and swelling) in her brain.

I feel guilty over it... even though people tell me I shouldn't because I didn't know what was really going on and could never have foreseen it.

It has just been a reminder to "give grace" because, even with those we are around ALL THE TIME and think we know SO well.. we might not see the bigger picture.

Oh, I almost forgot to mention- I cut my hair off (really really short) previous to the surgery because I felt it wasn't fair for me to keep all my lovely hair when Merika would be getting hers partially or, maybe.. eventually, completely shaven. It has taken some getting use to, and I do miss my long locks (I had been growing it out since I chopped it while pregnant with Keagan), but it definitely is easier to care for!



It has several ways to fix it- spikey, bangs up or down... yadda yadda. Today, to cheer Merika up, I did it in a faux hawk and asked her who she thought I looked like (because our son has a mohawk.. it's what we do when spring comes around). She actually smiled at me. It was great!

Tuesday, March 23, 2010

News on our daughter, Merikalyn *edit*

I am finally getting the opportunity to sit down and update my blog with the events of this week. It has been a crazy week, and we've just stepped into Tuesday. If you're my FB friend, then you already know what is going on, but I realize I have readers who aren't connected to me through my social network (and that's fine... I feel little weird having complete strangers on my FB!)

Because so much has happened since Sunday, I'm going to give you all "The Nutshell Version".

And, because I know some of you might be wondering, Merikalyn's name is pronounced like America + lyn (without the first A).

Sunday morning, my husband had to work and I didn't feel so hot because I was very nauseated and my sinuses had been acting up so the kids and I stayed home from church. Merikalyn mentioned she had a headache (although she didn't have a fever), so we lounged around all morning.

Around lunch time, she came to me and said she still had a headache and was trying to explain that the left side of her face felt funny, but she was very hard to understand. Her words slurred together.

At 1:30pm, we were sitting at the kitchen table, and the left side of her face started spasming. Her mouth was moving (without her permission!) and she managed to say, "Mommy, I can't make it stop!" I wisked her to my bed and laid her down while I called around figuring out what to do. I ended up calling 911, and EMS came out and looked her over. By the time they arrived (they were nearby, so it was quickly), the spasms had stopped. I wasn't sure what it was- stroke, seizure... I had no idea. Her stats looked fine so, while they offered to take her to the ER for our peace of mind, they said their recommendation was just to go to the doctor in the morning. (Afterwards, she started throwing up.)

Merikalyn seemed to improve when they left- her speech returned to normal, but she was still having difficulting smiling on the left side (although she was able to move everything else on the left side of her body- arm, leg, etc) just fine.

Brandon headed home as soon as I told him what was going on, and my dad made his way over too. Everyone hung out and we watched The Frog and The Princess. She seemed to be doing really well, so my dad decided he would head for home... and then she had another facial spasm. (We would later find out this was a partial seizure.)

After the seizure (which, remember, was on the left side of her face), we asked her if anything hurt, and she pointed to the right side of her head. Right then and there I knew something was definitely wrong- and I knew it was "a brain issue". (Afterall, the right side of the brain controls the left side of the body.) She had a total of four seizures- two at home and two in the ER.

We decided it would be best if I stayed home with the boys and Brandon and my dad took Merikalyn to the ER. They got her an exam room right away and took a CT scan. He contacted Texas Children's Hospital to be sure of what he saw, and then told my husband and father that there was a mass on Merika's brain.

I took the boys over to my friend's home (thank you Amanda H.!) along with the dog and headed to the hospital. They let us know they would be transferring her to Texas Children's, and so, while Brandon and my dad figured out our car situation, I rode with Merika in ambulance.

Let me fast forward, otherwise this will be a long message. Merikalyn has had an MRI (they put her under for it so she would be still and calm). We've had many, many doctors come through here. There's a team of them working together (Neuros, "Cancer doctors", eye doctors, etc) so yesterday (Monday) was very busy. Brandon and I didn't get any sleep for 36 hours, and Merika napped on and off.

She cried a lot and told anyone who would listen that she really missed her brothers. She was very emotional yesterday, and she overheard that they were going to shave part of her head when I was quietly discussing it with a friend and began to sob. (I'll get on to that part a bit later).

Yesterday evening, Merikalyn's main Neuro came by to show us the MRI (which basically shows "slices" of the brain) and explained what exactly they would do. Wednesday or Thursday she will go in surgery and they will try to remove as much as possible, and then they will biopsy it. This means that they will also be taking a small, miniscule portion of her brain as well (because this happens when they remove a tumor).

Her motor skills on her left side will most likely be affected. Fortunately, she is right-handed. Also, children are very resilient, so she will definitely "snap back". I'm sure of it.

Sometime early next week, they will sit down with us and explain what kind of tumor it is (it takes about 5 days for them to look at it every which way and come up with a plan). They will give us a "course of action". If she needs radiation or chemo, they will do that almost right away. She will also have physical therapy.

We have decided the best idea is to completely shave her head. The tumor is on the right side of her brain, sandwiched in the middle right side above her ear. (There is brain above, below, and to the left of the tumor- I'm pretty sure the right side of it is against the skull.)

She would be missing a big chunk of hair that would be obvious anyway, and, depending on the treatment, she may lose her hair anyway. I know she'll feel "weird" having half a head of hair.

This is a big deal to her because she has been growing her hair out for several years.



As you can see from this photo I snapped in January 2010, it has grown quite long. (She now has bangs, though.) She calls it her princess hair. She absolutely loves her long hair and wants it even longer (like Ariel!).

To make this process easier, we have asked friends to collect hats and thick stretchy girly headbands for her to wear so she feels pretty and girly (although, she is gorgeous with or without a thing on her head!).

A couple great friends of mine, Nina and Leslie, set up a caring bridge page. They are taking your donations of pretty little hats and thick, stretchy headbands with big bows or flowers on them (kind of like the kind babies wear, but really thick). You can send them in to the address they provide. (You can also send play wigs for her to wear.)

http://www.caringbridge.org/visit/hatsoflove

Another wonderful option: Hillary over at ORibbonal Bowtique sells gorgeous hats and headbands. She is also donating half of her proceeds to help our family with some of the expenses we have during this time. (Mention "Merika" during the checkout.) Because I don't feel comfortable giving my address to strangers, Hillary will have my address, so if you want to send a hat or headband to go to Merika, just let her know.

You can visit her online shop here: http://www.etsy.com/shop/luckygirl0408

If you don't see exactly what you are looking for, she takes custom orders. She's so creative and if you just tell her a color scheme or idea, she will work with you.

Others have asked how they can contribute financially. Right now we have a PayPal account available. You can send money to contact@mandymom.com through PayPal (if you have an account there).

My friends Jessica Cross and Christy Landry, along with Christy's mother, are working to put together a special bank account for people to donate to if they feel moved to do so.

We are so thankful for the outpouring of prayers, thoughts, wishes, and gifts of all sorts (time, effort, financial, food, goodies for Merikalyn, etc).



I know it sounds crazy, but this has been an amazing experience. I would never wish this on anyone- especially not my own children- but we have seen God do great things in this situation. He has kept our hearts lifted through the kindnesses of so many of you. We have had so many moments of laughing and smiling. Merikalyn had many visitors yesterday, and we enjoyed seeing so many who came to support and love on us.



We are all doing really well today. Brandon and I went at least 36 hours with only a "few winks" (maybe an hour or two total). Monday night, the effects of exhaustion wore off and I felt "normal", but I was very much ready to conk out last night! We all slept very well.

At around 6am, one of the doctors came in to check on Merikalyn. He woke her up, and I didn't expect her to be very coherent. When doctors talked to her yesterday, she sobbed through her sentences (a combination of missing her brothers and frustration over not being able to speak clearly and convey her feelings properly). I expected the same today.

Instead, as soon as she woke up, she was perky and cheerful. The doctor asked if her name was Merikalyn, and she replied, "My name is Merikalyn Taylor McGee! It's a long name, isnt it!"

I think today will be a good day.

Today, I plan on leaving for a bit to get my hair cut. I have been growing my hair out for about two and a half years, and like Merikalyn, I feel my hair is "my crowning glory". I also realize that it is just not right for me to be able to keep "my glory" when she is going to have to shave hers.

Brandon said he would shave his head so she wouldn't feel so bad, but anyone who knows him understands that's not a sacrifice as he is balding and keeps his head shaved!

I am going to have my hair cut pretty short. I've thought about shaving it, but I'm not sure I can stand hilarity of it all- since my husband has a shaved head, our 5-year-old son has a shaved head (currently with a mohawk down the middle), and our 2 year old just has light fluffy "chicken fuzz". Wouldn't we look like a silly bunch? I'm picturing the cover of that movie "The Coneheads".

We are hoping Merikalyn's hair is long enough to donate to Locks of Love. (It has to be 10 inches.) We would hate to "waste" perfectly "good hair" that she has worked so hard to grow out. (I'm almost positive mine is not long enough for L.O.L., though.)

She wants hair like the Disney Princesses, especially Ariel (The Little Mermaid), so we are trying to find a beautiful red wig for her to wear after she gets her head shaved.

Today, I hope to be able to have her see and talk to a few little girls here in the hospital who have shaved or lost their hair. I think that might make it easier. We are going to walk around the hospital and show her some of the cool fun things they have.

There is a girl here (Molly) who has a great job. She gets paid to visit the children on this floor and bring them whatever books, movies, and toys they want! She is very sweet and has a bright spirit. Yesterday, the only thing that got Merikalyn calmed down was these "Where's Waldo" type books (Seek and Find/ Look and Find books), so Molly found her four or five. They kept her busy... kept her mind off things.





We know you are praying for Merikalyn and our family. We ask that you would also pray for my brother, Chip (and his wife Tara), and my parents, Cathy and Charles. They live about five minutes away and have been here much of the way through this. (Dad was able to listen in when the Neuro showed us the MRI and explained everything.) This is a difficult time for this as well.

We had a hard time getting hold of Brandon's mother (who lives in Louisiana), but finally reached her yesterday afternoon and found out she was visiting a friend in NW Houston (Praise God! She was already nearby!). She will be taking the boys to Louisiana mid-week. (I know they will love that!) Please pray for her, and her husband Bernie Hatchett, as well as Brandon's siblings, Ryan McGee and Jennifer LaFleur.

I also want to thank Brandon's workplace for their kindnesses. He has the most amazing bosses (I am getting all teary-eyed just thinking about it!). He is still having to do a bit of work while he is here in the hospital, but we are thankful he is able to be here with Merika.

Merikalyn is currently on an anti-seizure medication and a steriod (for the swelling around the tumor). She is not in any pain right now.

Well, this has been long enough. (And, it's the nutshell version- remember?) Thank you again for your support, prayers, and love. We are indebted to you all.


*edit*

To answer a few questions I have received on Facebook:

-Merikalyn is 6, soon to be 7 (in May).
-She is able to wear her PJs (sometimes she wears PJ bottoms and a hospital gown on top) so this helps her feel comfortable. She is a petite 6, so for those of you who have asked what size PJs to get, size 6 would probably be fine (especially if it is a gown or shorts).
-She likes all colors.
-She doesn't have a "favorite" animal. She likes all animals.
-She loves Disney Princess anything.

*edit*

Merikalyn now has her own fan page on Facebook. It is under Merikalyn McGee. You can leave her messages there.

Wednesday, March 10, 2010

14 weeks; midwife appointment, cloth diapering

I had my 14 week appointment today. I'm measuring a week behind, but I'm a petite person anyway, and I'm sure my 2 weeks of sickness between this visit and the last may provide some reasoning behind it. (I measured right on target last time.)

In a few short weeks we'll be able to peek at the baby and find out the gender. I cannot tell you how much I anticipate this moment! I know I am definitely a spoiled woman, since my grandparents did not have this technology and just had to wait it out like everyone else!

This week has held it's share of loveliness and ickiness. Sometimes when we're really having a fantastic celebration in life, something comes along and tries to rain on our parade- and there have been several things that happened over the last few days that, at any other time, would have probably broken us down (not our relationship, but just our spirits).

But, God has.... IS... helping us through this time and providing for our needs, and we are ever so grateful. My women's study has been on attitude, and I know that God hand-picked this study for me because He knew what was to come and knew I'd need these verses and sermons running through my head.

Anyway, I have enjoyed slowly building my baby registry- not that I expect many people to purchase anything since it is our fourth child. It's mostly cloth diapers (I love gro baby diapers... they are so simple and cute!) to add to stash we already have. I am currently using one-size pockets with Keagan, and would love to use gro baby one-size snap ins (no pocket stuffing!), but, financially, it's best to use what I have and be thankful for it!

An internet friend of mine has been so generous as to donate her small one-size pockets to me for this little apple, and I am ever so thankful for her kindness!

I've also purchased a few disposables because I found an INSANE deal on a package of Walgreens brand(with over 50 diapers) for a mere $2.19 a pack. I had to ask a sales associate if that was the correct price. I bought all the packages they had left (which was three). These should last a good while since it's over 150 diapers and I will only be using them for outtings and maybe night times. Keagan is in disposables at night because he is such a heavy wetter, and I'm afraid of leakage, even though I have really good microterry liners. Still, since he sleeps through the night, I'd rather not wake him up to change his diaper, should I need to, and with an infant, I'm going to be up nursing the wee one anyway (and changing diapers)- so I'll likely use cloth during the nights. I'd also like to test out FLIP diapers, which have the option of using disposable liners- which are great for when you're out and about.. or at night (and VERY cheap, especially when compared to regular disposable diapers), but are also like regular cloth diapers. Two options, one diaper? Good deal.

I know my husband really likes gro baby (not that he hates the pocket diapers- he will change a pocket diaper) because the liners just snap in- no stuffing pockets, so it's easier to reuse the same cover. I think he'd also like FLIP diapers as well, so I've put both on my gift registry. Maybe one of my friends will be kind enough to grab me a few for my baby shower. (Some friends of mine feel I've been deprived and need a "real baby shower" since I've never had a "real baby shower".)

It's interesting because when Merikalyn was little, the idea of cloth diapers disgusted me. Of course, I was still picturing the old fashioned prefolds, diaper pins, and plain pull on covers that my parents used. I had NO idea that cloth diapers had come so far and were so simple. (In fact, we do use cloth when running errands, because they aren't that big of a hassle, but if we're going to be out for most of the day, we use disposables.)

Now I'm absolutely addicted and it's hard not to crave all the cute little colors and prints available! Most of all, even though the diapers seem expensive, in the long run, it's much cheaper (especially if you're buying one-size diapers that grow with your baby).

We were spending about $500 a year for disposable, off-brand diapers (which I often found on sale 2 for one) for a toddler (which means only 4-5 diaper changes a day).

During infant years, when a baby goes through about 8-10 diaper changes in a 24 hour period, you're spending much more, and double or even triple that price if you're using name brand diapers (depending on the name).

A friend of mine calculated the cost of what she spend on a year's worth of diapers and it came out to over $1000.

So, for the first three years of a child's life, you could be spending anywhere from $1500-3000 in diapers.

Compare that to the cost of one-size cloth diapers, even the nice expensive ones. Depending on how often you wash the diapers (the less you wash, the more diapers you'll need) and whether you buy them new or used (The nice thing about cloth is that they can be resold if they are in good, clean condition), and what sort of diapering system/brand you choose, you could spend anywhere from $60-1000 on diapers that will, if taken proper care of, last you through your child's entire diapering years.

If you've treated them with care, you can use them for your next child or sell them.

So far, I've received all my diapers have been lovely gifts from friends who were no longer using them- so all I've had to buy are soakers/liners and disposable liners (which sit on top to catch poo). So, my costs have not even broken the $50 mark.

If you're interested in cloth, I suggest you try out used first. That way you don't sink a bunch of money into brand new stuff only to find it doesn't suit you. And, it's important to remember that there are about a dozen or more different diapering methods/systems out there (fitteds, pockets, all-in-ones, prefolds with covers, etc) so if you don't care for one method, try another. :)

And find a good cloth diapering forum to learn the ins and outs of it!