Thank you for visiting my blog! If you are visiting because you have experienced a pregnancy or infant loss, let me say that I am so very sorry. I started this blog shortly after our Baby Grady was stillborn on November 12, 2008. Please visit the sidebar below called "Labels" to find the topic in which you are interested, or just read as your heart desires.

Friday, December 31, 2010

What You Didn't Know

My wife, in a moment of delirium, gave me her username and password to gain access to her blog. I am sure she will change the username and password very soon. I thought I would share with you some things you may not know about my lovely "Miss T":

1. Even though she maintains a blog site, computers are NOT her friend. More often than not there are cries of "Gib, this stupid computer....". Lord, don't let me have to inform her it is user error!!!

2. She truly is amazingly talented. I just did not know how talented of a writer she was until this blog came into existence! She is suppose to be a nurse by trade, but a writer she may become!? I think Yoda (for those Star Wars fans out there) would put it this way: "A nurse you are, a writer you will be"..Thank you ladies and gentlemen I am here all night..

3. She loves her children (but I guess she does a pretty good job of sharing that...ALL of that!!). This love extends to Grady. There is truly not a day that goes by that we don't mention his name is some way. Times like "I miss Grady", "I wish Grady were here", "Matthew your big brother sent us snow for Christmas" or simply "'Matthew GRADY' did you have to mess up another outfit!"

4. She loves to help others! I think that is why she is a nurse. A good nurse at that...but a better mother and wife! Jessica is picking this up.

5. She is also stubborn...Yes, that would be her picture in the dictionary next to the term. Emma Grace learned from the best.

6. She is social and has to be into EVERYTHING. The girls have this quality too. But, I think good old buddy boy Matthew is going to be the winner here!

So there are a few things about Miss T you may not have known. I am probably fired from getting onto her computer, so it was nice knowing you!

As we go into a new year, we are extremely thankful for the gifts we were blessed with this year. Our girls continue to grow into young ladies. We welcomed a new son into this world of craziness. OK, maybe a house of craziness!! I have a job which allows me to work with young people and rekindles the desire to get back into teaching. Just having a job these days almost seems unfair with so many wanting to work and not able to. But, whatever the future holds, I hope our family remembers that we ALL have a part to play in this grand plan of God's. This includes our Grady. We may not understand it, nor like the role we play, but someday we will get to see this blockbuster of a "movie" HE had all of us participate in. Happy New Year and I look forward to seeing everyone's starring role in this "film" of Life and of Love when it comes out!!

I am sure some time in the next year Miss T will talk to the Big Guy about demoting my role to just technical assistance from now on and making better choices as to who gains access to her stuff!!!!!..:)

God Bless..
G-

Wednesday, December 29, 2010

A White Christmas

Yes! We had a white Christmas here in Georgia. I heard in passing that it was the first in 130 years. It started flurrying right as the sun was setting, but the heavy snowfall didn't start until after dark. We ended up getting about three inches where we live.

The girls were beside themselves with excitement. They were in and out on Christmas night. They were not dressed appropriately, but they didn't care. They were just excited to see the white stuff falling.






Gib took Matthew out as the snow started to fall. We all agreed that Grady sent the snow here from heaven for Matthew's first Christmas. *WINK...SMILE*



The snow was beautiful the next day. I didn't get many pictures this time because I was inside with Matthew. Plus, our camera is being very temperamental and is almost dead, making it difficult to take pictures easily. I'm just thankful I was able to get the ones I did. And I really should learn how to use Photoshop to enhance some of these. Oh well.






Having lived in Georgia all of our lives, we've never had a White Christmas. It was special for all of us!

And I have to post this because I think it's so cute. Here are the girls with their BFF, Sidney, from next door warming their frozen toes by the fire.



Love,
Tonya

Saturday, December 25, 2010

Merry Christmas 2010

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Thursday, December 23, 2010

Tidbits from T

***I'm typing on a wonderful lap top that was given to me by very special family members, who shall for this purpose, remain nameless. They are so generous to think of our family when they get new things. Let's see, we've acquired a flat screen television for our bedroom, a printer/copier/scanner/fax machine, and now a lap top. I know we've gotten more nice things from them, but my brain is failing me. They knew our computer bit the dust and offered us this one that they were getting rid of. You know who you are...thank you! It works wonderfully!

***I started my post on expectations Monday and still haven't finished it. It's kind of long.

***Wrapped presents this morning and the girls can't wait to open them. And the anticipation of what Santa will bring is about to kill them. They asked for lots of expensive electronic gadgets, like an iPad, iPod touch, lap top, blackberry, television, etc. Even Santa chuckled when we went to see him. They also asked for a trampoline, new bike for Jess and new scooter for Emma Grace. Santa often knows what they need, so we'll see what they end up with...

Jessica was very sweet one night this week. When we were talking about what Santa would bring, I asked her if she would be really upset if she didn't get everything on her list. Her reply: "No. It's the thought that counts, so if Santa brings me anything, at least he thought of me". Sweet girl!

***The girls and I made yummy pretzel treats tonight. We put a Rolo candy on top of a small square pretzel and melted it in the oven for about 5 minutes. Then we gently placed half of a pecan on top of the Rolo while it was warm and soft. YUM!!!

Tomorrow we are making red velvet cake balls and chocolate chip cookies for Santa.

***We are still undecided about going to church tomorrow evening. One local church has a 4pm service, another at 6pm. I think we will do the 4pm, if we go.

***Much to my dismay, I decided not to send out Christmas cards this year after all. I found a card on smilebox.com that I'm going to email out for Christmas. I'm planning to take the kids' picture tomorrow and if I can, I will post the card here. Not exactly sure how that works yet.

***I heard from my friend who is working on Matthew's pictures, and they are almost ready. I'm trying hard to come up with a creative way to still send out an announcement of him, even though by the time I do, he will be at least 6 months old!

***Yesterday, we put together the exersaucer that has been in Matthew's closet for the last two years. It was another full circle moment for me. It was put together for Grady and has been sitting, unused, until now. He likes it but doesn't tolerate it for long. I have to put a blanket around his torso to help support him a little. I know it is making him use muscles that he hasn't used before. I think with time and practice he is going to love it.

***I'm worried that Matthew might be too fat. Babies are chubby, and most of the time, they work off that fat when they start becoming more mobile. I never worried about Jessica, who was almost as chubby as he is. And I wouldn't be worried about Matthew either if it weren't for Suzanne. She is a nutrition guru when it comes to preemies. She has told me that too fast of catch-up growth in preemies has been linked to diabetes and heart disease in those babies as adults. I don't know what's too fast and how much is too much. I also don't know if the same applies to Matthew since he was so big when he was born. What I do know is that he does love to eat!

***We actually might see some snow on Christmas here in GA. That hasn't happened in a very long time! It won't be big, and it probably won't even stick, but just to see some snowflakes will be nice on Christmas day.

***My stepdad put up a small tree this year. My mom was a big angel collector. He said he put an angel around his tree for each of his grandchildren. And he included Grady. That meant a lot to me.

***I've been thinking back to this time last year when I had the flu (pretty sure it was the swine flu), and I felt like I was going to die. I had just found out I was pregnant with Matthew and couldn't take much of anything. I took the bare minimum of Tylenol, Benadryl and Sudafed to feel like I might live. I'm so thankful to be healthy and well this year.

***I went to the store today and got things for our traditional Christmas breakfast. We will have bacon, eggs, biscuits, homemade chocolate syrup, and hash brown casserole. I only make chocolate syrup on Christmas morning to go with the biscuits. My step dad, brother and his family will come over to feast with us. We will all crash by early afternoon and need a nap from all those carbs!

***I got Matthew's stocking today, and I'm not happy with it. I thought his name would be monogrammed in white like the rest of ours. It appeared that way online and I was never given a choice to choose a color. I think I'm going to try to send it back. The only stocking that is different is Grady's. It is white and his name is monogrammed in red.

***I'm so behind on laundry it isn't even funny. And cleaning, too. Gib and I aren't giving one another gifts this year. I told him that a great gift to me would be for him to take on kiddie duty for two days. All I want to be responsible for is pumping milk and cleaning my house. I know it sounds crazy, but a clean house would do me a world of good!

***Can't think of much more to bore you with tonight. So long for now!

Monday, December 20, 2010

Matthew - 5 Months Old

***If you saw this post earlier on dashboard and then couldn't find it, that's because Emma Grace accidentally published it before I was done!***

One of these months, Matthew's monthly update is going to be just the way I want it! It just wasn't meant to be this time, though. Again! The printer was out of ink. I was going to hand write a sign. Then Gib said he would just photoshop "5 months old" into the picture I took. I tried to get a picture of him tonight, and I took a few, but none of them turned out great.

This picture was taken Friday while waiting to see Santa (the day after he turned 5 months). I do LOVE this boy!



This was taken tonight.



And I really want this one included because you can see all of him, but for some crazy reason, it flipped when I uploaded it. Just tilt your head to the right to get the correct view. And excuse his green socks with his outfit. This was not the outfit he started the day in, and since he was staying home, I didn't change his socks to match.



At this point, it is late, and I should be in bed. But I am determined to get this post up tonight because it was on this day, one year ago, that we found out we were expecting this sweet, precious boy. I remember very well the excitement mixed with fear and the dance in my heart between the two. I had absolutely no idea what God's plans were for this little one, but I knew I was thankful to even have the opportunity to wonder again.



On to the post itself...

Matthew's chronological age is 5 months, but his adjusted age is 3 months, 3 weeks. I include that because he seems to be developing all across the board. Some things are right on with his actual age while others are more on track with his adjusted age. I really don't care which way he develops, as long as he reaches his milestones!

Sweet Matthew, what are you up to these days?

Your personality is definitely starting to shine. You let your needs and wants/likes and dislikes be known, loudly! You love to look at us and watch our every move. You follow us around the room and will stretch your neck as far as it will go to keep your eyes on us. You really know Mommy's voice, too. We were at a family get-together yesterday, and you were in your grandmother's lap. I walked in the room, and when I spoke, you almost broke your neck trying to find me. That, of course, warmed my heart!

You smile all the time, and your cheeks are so big they look like they might bust with every grin! You smile almost every time you are spoken to and return our smiles with one of your own. You chuckled for the first time two weeks ago but you haven't really done it since...just one chuckle here and there, not multiple like you did the first time. You really are a happy baby boy. You mainly cry only when there's a reason, usually because you are tired or your tummy hurts (you are the pooping-est boy with the biggest blow-outs I've ever seen!).

You are very good at reaching and swatting with your left arm/hand. When you have a toy in that hand, you love to bring it to your mouth. You actually just discovered that hand a few days ago, and it's so cute! You look at it like it's the most interesting thing you've ever seen.

You are getting better with your right hand, too! You will now bring it to your mouth on your own, and you have started opening that hand a little to get those fingers in your mouth. A special friend, who we call MeMe, gave you a little Taggie car for Christmas. You absolutely love it! I gave it to you, and you immediately put BOTH hands on it and brought it to your mouth! I couldn't believe it. It made me SO happy for you!



I really haven't been too concerned about your right leg, but I have been watching it more. Cerebral palsy usually affects one whole side of the body, not just one extremity. You might move it a little less than your left but not by much. I'm trying to stay on top of it, though! You will start physical therapy in January, and I will make sure to keep your progress well documented. Hopefully one day we will look back and read this and see God's miracles and hands at work in your life! In fact, I know we will!

One thing you don't mess around with is eating time. You do love to eat! I am still pumping breast milk for you, which is your main nutrition. You average about 2-4 ounces of formula to fill in the gaps every day (but you didn't have any formula today!). You eat 6 1/2 ounces every 3 hours. Sometimes you don't quite make it 3 hours, and that's ok. Sometimes you go longer if you're napping well. I haven't started you on any solid foods yet. I'm still not sure when we will do that, but it is definitely in your near future. You are just now starting to watch us eat. That's my first cue that you're getting ready! You are certainly growing well. Two weeks ago, when I took Jessica for her check-up, I plopped you on the scale in the room. Granted you had your diaper on (which had just been changed) and your clothes, the scale read 15 lbs, 15 ounces. My guess is that by now you have surpassed 16 lbs! Go boy!

You can still wear some of your 3-6 month clothes, but you are quickly fitting into 6 month and 6-9 month clothes very well. I really did think I was set with clothes for you for a while, but if you keep growing at this pace, you will need more clothes very soon! You are still in size 1-2 diapers, but the next time I buy them, they will probably be size 3!

You are getting better and better at holding your head up by yourself. You're almost a pro! You are trying hard to start turning over from your back to you tummy. You love to practice when I'm changing your diaper! I make you have tummy time, but you don't like it at all. You have a hard time getting your right arm up under you. But when we start and I prop you up, you do very well supporting yourself. You are starting to try to sit by yourself, and you try very hard to get out of your bouncy seat. You stretch your neck up and grunt real hard to try to sit up while you are in it. Cute!

You continue to be a GREAT sleeper! You still take several naps, a long and short morning nap and a long and short afternoon nap. You don't stay awake very long after you first wake up in the morning, usually a little more than an hour. Your first morning nap is usually 1-2 hours; the next is only about 30-45 minutes. You follow the same pattern in the afternoon. If you don't get your daytime sleep, you do NOT go down easily at bedtime. You struggle more at bedtime than at nap time, even on a good day. For the most part, you go to sleep by yourself. Sometimes we have to rock you or stand and bounce with you, but we don't mind the extra cuddle time. You go to bed between 7-8 at night, and you get up around 6-7 in the morning. You go most of the night without your paci. You usually need it between 4-6 am, and then you go back to sleep. I'm so proud of you, and I appreciate you doing such a great job so I can sleep, too!

You fell asleep with your bottle tonight which doesn't happen too often. But the amazing thing is that you stayed asleep after you were finished. Daddy came in and took this picture of you. You remind me of your big brother.


You absolutely love to get a bath! I wasn't bathing you every day, but with your blow-outs lately, you've ended up getting one almost daily. You just sit and chill while I wash you, and it relaxes you right before bed.

You drool a lot and blow bubbles at times. Your favorite word/sound to make right now is "Geee". You still coo and "talk" to us which we all love.

I'm sure I've left something out, and if so, I will come back to add it.

I love you and am having a great time watching you grow and become your own little person. I just hate that the time is passing so quickly! I'm so blessed to have you in my life!

Love,
Mommy

Dear Lord, Thank you so much for this precious boy whom you knit perfectly and wonderfully in my womb. Thank you for the hope and healing he has brought into our lives. Thank you for the opportunity to have a living son here on earth as part of our family. He has stolen our hearts, and we are truly blessed. We praise you and give you the glory for him and all of our blessings. Amen.

Tuesday, December 14, 2010

They Missed It Again!

It seems the CDC missed the correct strain of flu virus again in this year's flu vaccine. It's a three-in-one this year, including H1N1. But the strain that's covering up our small town is not one of those three. And neither is the strain Emma Grace came in contact with.

Yep. She has the flu.

SIGH.

I took her to the doctor yesterday afternoon. I almost cancelled her appointment because she was acting fine and her fever was down. Even after her Motrin had worn off. (It spiked back to 101 last night) But, I decided to take her anyway. Gib had made the effort to come home early so I didn't have to take Jess and Matthew. And honestly, I thought she might have strep. Her throat looked a little suspicious and it came on quickly like strep often does.

I have to hand it to my pediatrician's nurse, though. I gave her the history, and she asked to see Emma Grace's eyes. She then said she was going to swab her for flu. Dr. E walked in, and I told him that I almost cancelled her appointment. He said, "Well I'm glad you didn't because she has the flu".

Unbelievable! She has had a fever but that's it. Never would I have guessed it. Anyway, he prescribed her Tamiflu and said she should have a mild case between the flu shot and medicine. He was NOT thrilled to hear that Emma Grace had been around Matthew A LOT earlier in the day that her fever showed up. I'm praying SOOO hard that he doesn't get it. I'm loading up on my Vitamin C tablets and have added some garlic tablets, too. That's about all I can do. And pray.

Did I mention that I'm praying Matthew doesn't get the flu?

I'm a little concerned because he is still sleeping this morning. He almost always wakes up at 6am. He stirred but went back to sleep, without his paci. Since I didn't have to drive Emma Grace to school, I decided to let him sleep. But I never thought he would sleep this late. I'm going to check on him again as soon as I finish this post.

Hopefully one of our saving graces with the rest of us staying well is that Emma Grace isn't coughing and sneezing all over the place. We are washing our hands like crazy (mine are raw, cracked and bleeding but it's worth it!) and being very careful.

I have nothing else exciting to post today. Oh, except for the fact that coming home from the doctor yesterday we came upon a bad accident. No emergency vehicles were on the scene yet. We were about 10 cars behind where it happened, and I could only see one car to begin with. But as cars started turning around, I saw another van that had hit a tree. The thought crossed my mind to get out and help, but I didn't want to leave Emma Grace alone in the car, and I could hear sirens on the way. Gib asked me if I got out to help or not. It has been so long since I've done anything truly medical, the thought scares me. (Although part of me misses it!) Emma Grace and I prayed for those involved for it didn't look good at all. The two lane road was completely blocked with 5 ambulances, three firetrucks and multiple police cars. I didn't mind at all that it took us forever to get home. I was just thanking God that we weren't involved and still praying for those involved and their families. Reality always kicks in with me when we are so close to an accident scene. If we had left the doctor's office sooner or had not gotten stopped by a long traffic light, it easily could have been us.

I have a post about expectations that I'm hoping to get up soon. I've been pondering it for quite a while. Oh, and they did cancel the field trip to the Christmas Tree Farm today. Not that it matters for us!

Have a great day!

***Matthew is up and seems to be fine so far***

Love,
Tonya

Sunday, December 12, 2010

Tidbits from T

*It's another cold, gray, windy day here in GA. We may even see some snow flurries later. Of course the kids are hoping for a real snow, but it's just not gonna happen this time. We are staying in today, but I will have to go to the grocery store at some point.

*Emma Grace woke up at 4am with a fever of 102. She has no other symptoms, but I'm worried about Matthew. She was around him a lot yesterday. I'm just praying that he stays well, along with the rest of us.

*Jessica spent the day yesterday with her 6th grade group from church. About 13 of the girls got together and had breakfast at Chick-fil-A. They walked to the dollar store and bought things for shoe boxes for local foster children. They went to one of the small group leader's house and assembled them, ordered pizza, watched a movie and ate smores. Turns out she was at the home of a Georgia Bulldog football player. A very good one, in fact. This made her Daddy very happy!

*Gib's Christmas party was Friday night. My sister-in-law, Cheryl, came to watch the kids. Thank you! It was nice to get out and have some adult time and conversation. The food was delicious, and I'm embarrassed to admit that I cleaned my plate...all three of them (salad, entree and dessert). It's absolutely amazing how hungry I am while breastfeeding. I can out-eat even the hungriest man, I'm sure!

I went shopping to find something new to wear. And struck out, as usual. I think I'm shopping in the wrong stores. I bought a pair of new black slacks, and I'm taking them back. They seemed to fit well, but by the end of the night, they had stretched so much that the waist band was falling off my hips. I borrowed a red shirt from a friend of mine that I was going to wear until I discovered it was missing the top button. Turns out it was a good thing that I wore one of my previous Christmas shirts because I splattered juice from my steak all over myself. Uggh. I would have HATED to mess up her shirt!

Not only did I splatter myself with steak juice, I knocked over my place card and the Principal's wife's place card. And I was only drinking water and diet coke! Since I couldn't blame it on the clumsiness of pregnancy, I blamed it on sleep deprivation. I was up all night the night before because my sweet friend, Jenny, across the street spent the night at the hospital with her husband (he is fine and home now). I, in turn, spent the night at her house with her kids, and only got an hour nap on Friday.

I've put in my order for a nap later today since I didn't get one yesterday!

*I mentioned that I spoke with the neurologist, Dr. S, again on Wednesday. I called back to get the measurements of the damage in Matthew's brain. I never expected Dr. S to call me himself, but he did. I was impressed by that. He explained that it is hard to get an exact measurement because fluid is communicating between the cavity and ventricle. He and the neuroradiologist estimated it to be 1 inch long and 1/8 inch thick. That's pretty big for such a small brain, at least it is to me.

I asked him if porencephaly really is as rare as the internet makes it out to be. He said it is uncommon but not unheard of. He said it is more common with larger brain bleeds, grade 3-4. Matthew's was grade 2-3. However, Dr. S wants me to get his images from his first cranial ultrasounds put on a cd and bring them with me to our next appointment in January. He wants to review them with a neuroradiologist that he trusts.

He was still encouraging, optimistic and somewhat confident that Matthew would be okay. He never said he would be fine, but he requested an invitation to his high school graduation and said he wouldn't be surprised if Matthew doesn't "have a great double handed backstroke if he plays tennis". He said we will know more about his fine motor skills around 9 months of age when Matthew develops the pincer grasp. Dr. S definitely has an interesting and very different personality, but I think I've broken through his shell. He called me a "highly intelligent mother" and told me to "be sweet" as we hung up. In his office at our visit, I told him we were going to work very hard to help Matthew be the best he could be. He said, "With you I would expect nothing less". I told him I would take that as a compliment, and he said, "It was meant as one". He seems to be knowledgeable, so for now, I'm sticking with him. He seems to be making an effort to answer my questions and even put me at ease a bit. Of course I appreciate that.

We can't get into physical therapy until January. I'm still working with Matthew on my own and am praying each and every day that he will be okay. I've even started praying for his right leg, too. Things seem fine for now, but it's hard to know at this point.

*The girls get out of school this Thursday for Christmas break, and I'm ready! I love having them home. Even if we don't do much, I just like knowing they're here, hanging out in our jammies and just enjoying each other. I started my Christmas shopping yesterday but still have a good bit to do. It has definitely crept up on me!

*I've got to find a time to take Matthew and the girls to see Santa. I surely do NOT want to do it on a weekend! I'm thinking maybe we will go out this Friday since most local schools will still be in session.

*I was all excited about doing Christmas cards this year because I didn't do them last year, but Gib shot me down this morning. I know it's expensive, and the postage usually costs more than the actual cards. I typically do them at Sam's and send out around 200. I was going to send an announcement of Matthew with them, but unfortunately I still don't have his newborn pictures from my friend. :( I'm sad, though, because I don't want Matthew to be the only one of our kids who doesn't have an announcement. Even Grady had one...

So, this morning I've been thinking of how I can share our news, life and a recent picture of the kids with everyone. I'm thinking of sending out an email to everyone for whom I have an email address and only ordering a few picture Christmas cards. That should cut down on the cost for us and will be more earth friendly by saving paper.

*My nephew, Sean, turned 21 yesterday! I absolutely cannot believe it! It seems like yesterday he was born. My how time does fly. I wish I had a recent picture of him to share, but I don't. I'm hoping he had a great, fun, safe time celebrating last night.

I remember when I turned 21, Gib and I went out to dinner. For the life of me, I cannot remember where we went, but it was somewhere in Buckhead. I ordered a drink and didn't even get carded. I was so mad! I told our waitress that it was my 21st birthday, and I couldn't believe she didn't card me. I went on to say that if I had come in the night before she surely would have asked for my ID. What happened next? She asked for my ID. HA!

*I still have my thank you notes to write. I HATE that it is taking me so long. I really have no great excuse, other than the fact that between pumping and feeding Matthew, playing with him and trying to keep up with daily chores, there's not much extra time. I will get them done, though!

*I can't think of much more to bore you with right now. It is now evening time. I tried to nap but more rested than anything. Still have to go to the grocery store. About to start dinner. We have had some snow flurries. And now Gib doesn't feel well. But Emma Grace has been jumping and playing all afternoon. Her temp has been up, but it's not slowing her down. She still has no other symptoms. The jury is out as to whether she will go to school tomorrow or not.

Her class is supposed to go on a field trip to a Christmas tree farm Tuesday. But I'm strongly considering keeping her home if they don't cancel it. It is supposed to be 13 that morning, windy and a high of 34. They will leave at 8:30 to head there. I cannot imagine that they will go through with it because they don't even go out for recess when it's this cold. We'll see.

Toodles for now!

Wednesday, December 8, 2010

Chuckles - No Matter What

I am so very happy and pleased to tell you that on this very cold, gray day here in Georgia, sweet little Matthew chuckled for the first time! It was the most precious sound I've ever heard. Except for when Jessica and Emma Grace chuckled for the first time, of course.

He has been so close several times, and I'm not convinced that he hasn't semi-laughed before. Like just a little, heh. I really wish you could hear what I'm trying to say!

But earlier tonight, the girls were sitting behind me as I sort of dug my mouth just under his chin/cheek area, making a funny noise while doing it. He chuckled and then we scared him with our reaction. Poor baby! He didn't cry, but he was definitely startled. I did it again, and he chuckled again. Sweet, sweet! Oh, the joy. I've been waiting to hear that sweet sound!

Not long before that moment, I heard a song that I've never heard before. The title on the television caught my attention, and I turned it up to listen. It might be one of my new favorite songs, and I'm adding it to my play list when I have time.

It's called "No Matter What" by Kerrie Roberts. It absolutely couldn't be more perfect for our life, right now and in the past. The song speaks truth and straight to my heart. I'll let you google it if you want to hear it, but here are the lyrics from this site.

I’m running back to Your promises one more time
Lord that’s all I can hold on to
I gotta say this has taken me by surprise, but nothing surprises You
Before a heartache can ever touch my life
It has to go through Your hands

And even though I keep asking why, I keep asking why No matter what, I’m gonna love You
No matter what I’m gonna need You
I know You can find a way to keep me from the pain
But if not, if not, I’ll trust You no matter what, no matter what

When I’m stuck in this nothingness by myself
I’m just sitting in silence
There’s no way I can make it without Your help, I won’t even try it
I know You have Your reasons for everything so I will keep believing
Whatever I might be feeling, God You are my hope
And You will be my strength

Anything I don’t have You can give it to me, but it’s OK if You don’t
I’m not here for those things
The touch of Your love is enough on its own
No matter what I still love You and I’m gonna need You

No matter what I’m gonna love You, no matter what I’m gonna need You
I know You can find a way to keep me from the pain
But if not, if not, I’ll trust You
I know You can find a way to keep me from the pain
But if not, but if not, I’ll trust You

No matter what
No matter no matter what
No matter no matter what
No matter no matter what


Even if we hadn't gotten good news about Matthew, God is still good. No matter what, we would choose to trust Him. I'm so thankful and grateful for this blessing. I actually spoke to the neurologist again this morning about the size of the affected area of Matthew's brain. I hope to post about that tomorrow.

If you need some encouragement and want to hear a beautiful voice, look up this song and take 3 minutes to listen to it.

Love,
Tonya

Monday, December 6, 2010

Answers

Whew, what a day! Is it bedtime yet? Almost, and I'm ready!

So we went to the neurologist today. His name is Dr. S. I sure was glad to have the heads up about his bedside manner. I was NOT initially impressed at all. However, he somewhat redeemed himself toward the end of our appointment.

As for Matthew's diagnosis and prognosis, we left with the best possible news we could, all things considered. Basically, the brain bleed that Matthew had at birth has caused a "hole" or "cavity" to form in the area of brain tissue that was damaged. I wish I could draw it for you. Dr. S was able to pull up the actual image on his computer, and the area looked huge to me. My heart sank when I saw it. But, he categorized it as a small to medium area and went on to say, "we'll call it small for your anxiety level". I called back to get the actual measurements because I just want to know.

Basically, he said we need to think of Matthew as "a normal baby with mild cerebral palsy". I sure didn't want that diagnosis, but it could be MUCH worse. We went in to this appointment knowing things were not perfect, so we didn't expect to hear that he was fine. He assessed Matthew and said we needed to start some physical therapy for his right arm/hand. It really is too early for us to tell much because Matthew hasn't reached the age of many physical developmental milestones yet. Dr. S did say that intellectually, Matthew should be fine.

Dr. S said that Matthew has some extra fluid in his head, but that "it doesn't excite" him. He seemed to think it would go away. As long as his head keeps growing at a normal rate and size, he should be fine.

Dr. S said this is not something that will get worse. It is the way it is to stay. I was glad to hear that! I was worried that the area would grow, and we might start seeing more symptoms/side effects. He was encouraging that the stem cells in Matthew's brain could possibly compensate for the damaged area. He said he couldn't promise that Matthew would "grow up and text with his right hand", but only time will tell. He told me to think positive and even cracked a smile a couple of times. If I'm not mistaken, he even chuckled once.

Matthew will most likely have to have another MRI in the future, but Dr. S said it might not be until a year from now. We will go back to see him in a month and in the mean time, start physical therapy.

Our pastor and some elders of the church prayed over Matthew yesterday after the service. It was really special how it all came about. I'm too tired for details, but the prayer was awesome, and I really felt at peace.

Thank you SO much for your prayers for our sweet boy! I will keep you posted. And, by the way, I can already see much improvement with Matthew's right arm/hand with the things I've been doing with him. He is bringing his right fist to his mouth without help and several times today, he opened his right hand, also without help. I truly am encouraged with God's healing hand and physical therapy, that Matthew WILL be able to text with his right hand when he gets older. If not, it's okay...everything will probably be voice commands by then anyway! HA!

Love,
Tonya

Thursday, December 2, 2010

Up and Down

I've been up. And I've been down.

Emotionally that is.

One minute I feel encouraged and at peace, and the next, the heaviness sets in along with the uncertainty of the future. I know I have no control over it. I know God IS in control. Of all of it.

We did get an appointment with a neurologist for this coming Monday at 10:40am. I was very impressed by the doctor's biography on their website and felt pretty good about it. He apparently has published some articles on the high risk preterm infant and neurological complications. But I remained a bit skeptical of getting in so quickly. Maybe that is because this doctor isn't commonly called on for referrals...read on.

I received an email this morning from friend who reads my blog. She gave me the name of a great neuro that her daughter has seen and further in the email, she said "Try to avoid Dr. {blank}. He is cocky and does not listen." She had seen him with one of her children. Well, unfortunately this is the doctor we are scheduled to see. I know this is one person's opinion and everyone is different. But I trust her opinion as she is a nurse and a friend.

I am keeping the appointment because I want to be able to ask some questions and need some answers fairly quickly for my own sanity. If I hate him, I don't have to go back. I can make an appointment with another doctor and wait a while to be seen. Should be interesting. Gib is going to take off work to go with me which I'm relieved about. He has testing next week, but it doesn't start on Monday. And listen to this...

I was supposed to have jury duty next week. Right after I got my summons, I called and left a message to see if I could delay my duty. I told them I had a young infant who I was nursing (they don't need to know that I'm pumping...I'm sort of nursing...just not directly). I didn't hear back from them, so I asked several people to watch Matthew. I called back on Tuesday and actually got a person. She was the sweetest thing ever. I told her my situation, and she removed me from my duty! She even said that if my name gets pulled again and I'm still nursing just to call her back and she will take me off again. It all worked out with Matthew's appointment being next week. However, if I hadn't already asked to be relieved, I certainly would have called after learning of the appointment time.

That's about all for now. I have several posts brewing in my brain, but they are very time and emotion-involved. Thanks again for the sweet comments, emails and most of all your prayers!

Oh, and one more thing, I receive daily devotions via email from the Proverbs 31 Ministries. Yesterday's title was "Don't Overthink It". The verse was from Phillipians 4:6 (NLT), "Do not worry about anything; instead, pray about everything. Tell God what you need and thank him for all He has done." WOW! I needed that yesterday (and everyday really!). If you would like to read the entire devotion, click here.

Love,
Tonya

Wednesday, December 1, 2010

Voice of Reason and Matthew's Song

The last 48ish hours have been hard. And that's an understatement.

I have yet to find anything positive about porencephaly online. I literally spent yesterday obsessing and pacing the floor. And praying, too.

I had a hard time putting Matthew down, so he paced with me in my arms. I spent lots of time on the phone with the insurance company and doctor's office. Hopefully, we will have an appointment Monday with a neurologist. I'm excited but a little concerned that we can get an appointment so quickly. Most pediatric neurologists are booked at least two months out. I'm just wondering if the one we are seeing is really that great (he was NOT my peds first choice). But you have to be pretty smart to be a neurologist, and I'm just counting it as a blessing and gift from God to have the opportunity to get some answers this soon. If I don't like him, I can always wait longer and get a second opinion from someone else. I love options.

My voice of reason spoke with me last night. Betcha can't guess who that is...

Yep, her name is Suzanne. Not only did I talk to her, but she talked to Dr. L, the neonatologist from the NICU. When she told him about Matthew, he all but blew it off and said it was common in preemies after a bleed, baby's compensate well and it should be no big deal. I know Dr. L isn't God, but I do have lots of faith and trust in his wisdom, knowledge and expertise. He is one of the smartest people I've ever met. I was able to breathe a slight sigh of relief after talking to Suzanne. She told me I was looking in the wrong places. That I should only be looking in medical journals for info, but I don't have the kind of access she does. I tried google scholar, but could only read a few abstracts. The size and location of this cyst/cavity is going to be a huge determining factor in Matthew's prognosis. The neurologist should be able to pull up the image/results digitally at our appointment and give us more info. No offense to radiologists out there, but I don't know the qualifications of the one who read his scan and gave no measurements. That's just not right.

Anyway, after I posted about the results, I went to prepare dinner. The whole time I was in the kitchen, and the rest of Monday evening, I just kept telling myself that God is bigger than this. Telling God that He is bigger than this.

When I went to bed that night, with my mind still wandering, a song jumped into my head. It is the song that gave me the most hope that Matthew would be born alive. The song that would bring me to tears every time we sang it at church. The chorus played over and over in my head. I have referred to it several times as "Matthew's song", but now it really is.

The song is "Our God is Greater" by Chris Tomlin, song number 22 on my playlist below. Here's the chorus:

CHORUS
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...

And I love the bridge too:

BRIDGE
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
What can stand against?

(Lyrics taken from here)

As I paced and prayed, I repeated those words. I do feel a bit more at peace today. But it's hard to completely rest when something might be wrong with your child. And even though the bible tells us not to worry, I'm human just like everyone else. I trust God in His plan for Matthew and our family, and I'm praying for a great outcome from all of this. I know you will pray for us too, and you will never know how grateful I am for that!

I'm calling the doctor back today to see if we can get Matthew started on some physical therapy for his right arm/hand soon. I've been working with him and have seen some improvement. I can only hope that a professional will help even more. I will keep you posted on all of this in the days to come.

Thanks for always "listening" to me!

Love,
Tonya