O, Christmas Tree...

"O Christmas Tree! O Christmas Tree!
How richly God has decked thee!
O Christmas Tree! O Christmas Tree!
How richly God has decked thee!
Thou bidst us true and faithful be,
And trust in God unchangingly.
O Christmas Tree! O Christmas Tree!
How richly God has decked thee! !"

.

 This year has been somewhat tough financially,as it has been for many people. So, when time for a Christmas tree came and they were $25 a pop, for a small one, we almost considered just forgoing the tree this year. We didn't have one last year at the hospital and we were fine, right? Gracie and Josiah just LOVE Grandma and Grandpa's tree, though, so when  friends offered us to come cut one down on their property, off we went.

 My friend was somewhat disappointed in the selection she had, but I was thrilled. Our home is not large, and neither is our family (yet). So, to me, a little tree is just PERFECT. It's cute, and to use one of her favorite terms, cozy.

 My friend has 8 boys. The second oldest is cutting the tree down and the oldest hangs onto it. They are such servants.

 Our sweet little tree, with just one strand of lights on it.

 Gracie, putting on her snowman. John bought that snowman the year she was born. He wrapped it up, in tissue paper, and gave it to me, in the NICU. Grace had had a rough day and I had spent the better part of it crying. When I opened it, I started cracking up immediately, and he started to laugh. People thought we were crazy. I turned to the nurse taking care of Grace that morning and said "Look, my husband bought me a snowman with hydrocephalus!!" It might sound unfeeling or strange, but he knew exactly what I needed!!

 "Lights, Mommy, lights!"

 Look at then belly on that kid!! :)

 Our very first family ornament. This year I need to find one with 3 kids and 2 cats. Hmmm.

 My Pastor's daughter and son made this ornament for me. Nathan (his son) has since gone on to Heaven and so this ornament will always remain very dear to me.

A better view of the hydrocephalus snowman. Isn't he cute??

Baby Jesus

This morning, Grace and I set about making a present for her Sunday School teacher. As we were gluing, I was telling her who the different people in the nativity scene were.
Our conversation (in a nut shell)-

Grace- "Who's this?"
Me- " That's Joseph, Jesus' father."
Grace- "God is Jesus' father."
Me- "Yes, He is, and Joseph is His earthly father.
Grace- "Oh."

We moved onto Mary.
Grace- "Who's this?"
Me- "That's Mary, Jesus' mother.
Grace- "Like ooo my mommy and grandma is ooo mommy?"
Me- "Yes, just like that."
Grace- "Oh."

We move onto Baby Jesus.
Grace- "Who's this?"
Me- "That's Baby Jesus."
Grace- "That Jesus."
Me- "It's a baby to replicate Jesus." (Because she knows what replicate means, LOL)
Grace- "Oh."

We continue, putting the wise men and angel on, placing the stars in the sky, etc. I noticed that she had stopped giggling and was being VERY quiet. I knew she was thinking about something.
Me-"What are you thinking?"
Grace- "I pray to a BABY??"

                                                                         Finished product!

Some pictures...

 

Mary and Chad                                           Gracie's schoolwork

 

Mary and Grandpa

 

Gracie praying before Thanksgiving dinner

                                                          The ladies at Thanksgiving Dinner

Amanda and Charity

Thanksgiving 2010

"In every thing give thanks: for this is the will of God in Christ Jesus concerning you." I used this verse last year...but did not at the time realize how true it was.

 So, I have of course, found myself looking back to last year at this time. Last Thanksgiving, our pastor had gone to Florida to visit his daughter. He called me that morning though (says something about him, doesn't it?)-- to get an update and let us know we were on his mind and in his prayers. When we were getting off the phone, he asked me "What are you thankful for today, Michelle?" I knew I should say something...even with everything that was going on, I still had so much to be thankful for. I was silent though. Completely, utterly silent. I can remember his words as clearly as if he were speaking them to me right now.  " Be thankful, Michelle. Find something to praise God for everyday. No matter how big or little- just make sure to praise Him."

Today, I am thankful that I took his advice. I am thankful for those moments in the stairwell, when I would run up and down them, just to expend some of that pent up energy and adrenaline. I would run and pray, and run and praise. Sometimes, the only thing I could think of to thank Him for was the fact that I hadn't fallen! I can remember one night, I was running and singing " How Great Thou Art" at the top of my lungs. Probably not very well, and believe me, it didn't start out with a right heart. By the time I got to the chorus, I was into it though. So into it, I didn't even notice the doctor sitting on the bottom stair and I trampled right over him. It was like 4am and usually there was nobody down there at that time. I apologized to him and kept right on going...and a few days later he came into Gracie's room to do a consult. He looked at me somewhat strangely at first, with a glint of recognition, then just went about his job.

This year is different...and I am thankful for that. We had dinner here at my house...I think there were 16 or 17 here all together. My mom, Amanda, Gracie and I cooked and baked for what seemed like days-- and the guys left an hour later to watch the game. :) And I'm thankful for that...last year, we ate at the RMH- and I left after an hour to get back to my comatose daughter. This year, we had a million and a half dishes to wash, vacuuming to be done...and I think there is chocolate permanently stuck on my couch. Last year, there were no dishes to be done, no messes to be cleaned up...it was all done for us so we could relax. In reality, the majority of us rushed back to our loved ones. This year, my little house was so loud I couldn't think.There were three under 5, five teenagers, and John Spangler (LOL) here! Last year, the hospital room was completely silent...all you could do was think. Think about what tomorrow would bring, what the next MRI would say, whether she would soon wake up completely, what waking up completely would mean. Yesterday, when I started to think that it was too loud, when I was somewhat tempted to complain about the noise, I thought about that. How last year, I would have given anything just to hear her sweet little munchkin voice.

What am I thankful for this year? I'm thankful that I've had my loving Savior as my Guide for the past 375 days as we've gone through this journey. I'm thankful that He truly is the Great Physician...and that as He has healed my daughter physically, He has also used her to heal others spiritually. Including us. I am thankful for a husband, who while imperfect, loves his God, his wife, and his children with his whole heart. I am thankful for the two beautiful children God has given me, and the amazing teenager He has entrusted me with for now. For the parents who have been beyond amazing. There have been entire months missed from work, emergency trips to Rochester have been made. They have watched Josiah more times than I could ever count, and just been my rocks. I'm thankful for our church and our church family, without whom I would not have made it through this year. I am thankful for the people that I don't know (school classes, missionaries, churches across the country) that have taken my family, and prayed for us. These people that don't even actually know us have given little pieces of their LIVES, as they lifted us up in prayer. It leaves me amazed whenever I think of it.

And last, but not least...I am thankful for this trial. Thankful that God chose US to go through this...and then chose to go through it right along with us. He has been so good to us!!

Michelle

Long awaited update

Wow, I am truly sorry that I haven't updated in so long! I guess moving and everything else has taken more out of me than I thought it would. (Of course, stupid mono hasn't helped.) So much has happened since the last time I updated the page! We have had two emergency trips to Rochester, CT scans and shunt series. All have been fine, obviously. What was NOT fine though, is that Gracie was having sub-clinical seizures. This means that she was having seizures, so small that they easily go undetected. Even an EEG often does not catch a sub-clinical. They are basically usually suspected due to symptoms described to a neurologist by the parent, and then if you're really lucky ( like we were) your kid will have an episode while she's in the office! This is exactly what happened with us. When we found out about these seizures, the neurologist's first thought was to go up on her Carbatrol. I had done some research though, and found that Keppra, the first anti seizure drug she was on, has the lowest risk of LONG TERM side effects. So, we decided to try her back on the Keppra. We started her on what we call "a middle of the road" dose, as we weaned her off of Carbatrol. She went from a morning does of Carbatrol and an evening double dose to a morning dose of Carb and Keppra and an evening Regular dose of Carb and Keppra. She did amazingly well on this combo. We were supposed to do this for one week, then weekly take away a dose of Carbatrol a day, until we got down to just Keppra. Well, she had another seizure. So, we have decided that her body might need the combination of drugs, which many kids do. So, we have settled at 100 mg of Carbatrol in AM and PM and 400 of Keppra in AM and PM. She also take Vitamin B6, which naturally stabilizes the mood swings that both drugs can cause.Getting them into her is a daily challenge!! The Keppra tastes nasty, and now she knows that she's taking medicine when she eats her morning yogurt. OOPS.

We are a little over 2 months into the school year. I can say without a doubt, school is one of the best decisions we ever made. Grace gets so excited when she sees the bus pull up to get her, and when she gets off at night, she has to go and say goodbye to all of her friends. She has LEARNED so much! She knows her right ffrom her left, they've retaught her to dress herself (partially). She's able to talk up and down stairs assisted. She now gets up and down on the potty by herself again. It's not uncommon to have a 5 or 10 MINUTE conversation with her, where she's the one initiating.


Josiah is doing well also. We have an ENT appointment for him on 12/1/2010. It looks like we will finally ne getting ear tubes for our little man. He has had obnoxious, recurrent ear infections ever since I stopped nursing him at a year. He and Gracie are the best of friends!

And to end, I can NOT believe that a year ago, we were watching as Grace was wheeled back up from the OR. She had just had her shunt revision, and she looked like a little Indian princess. She was still comatose, and the neurosurgeon came in and told us that while the surgery had gone well, the stroke had been more massive than he had originally suspected. I still hear the words, "time will tell" resonate in my head. I can see her eyes flutter open for the first time, and see her try to form those first words. I can see her sitting on my mom's lap, unable to control her movements. I can remember wondering if it would always be like that...and if she would hate me if it was. If you prayed for Grace, even once, in this past year, THANK YOU. I will NEVER tire of thanking you. Moreso, I will never tire of thanking Jesus. I try to always end my posts the same way...God has been so good. Isn't it exceedingly true, more and more every day? How has He been good in YOUR life? Think about that today...even in the storms and trials, He is still good to us!!

Michelle

So, a year has passed...

This photo slideshow generated with Smilebox

Hope, birthday party, SCHOOL, and Pee- Wee's...

This is Gracie's baby, Hope. Last week, Hope got a traumatic brain injury of her own...her head fell off!!

  Gracie taking care of Hope. She has been caring for all day, even leaving her in her "hospital bed" so she can heal.

Gracie, my mom and Sue.

The scare.

So, night time came. Everyone but Grace and I had left the hospital (of our family, I mean), and we had settled in for bed. As I said before, Gracie's blood pressure had been coming out quite high for her. The nurses kept telling me that it was just because of her moving around a lot while they were taking it, but I was still nervous. Blood pressure and intracranial pressure go hand in hand, so ANYTIME I see a high number, I start to worry. Anyway, 8 pm came and Grace was tired, so into her little cage she went. I sat with her until she fell asleep, and then I left the room to get a drink. I came back, about 5 minutes later, and immediately checked on her. She was sleeping peacefully.I hadn't slept at all the night before, so I decided to pull the chair out and lay down. I was sound asleep for about an hour - then we got a neighbor. I decided to get up and use the computer for a little while--which of course turned into an hour. Suddenly, I realized I hadn't checked on her in an hour. So, I jumped up to look in on her. I did my old standard- stuck my fingers under her nose. She seemed fine. As I was pulling my hand back, it felt warm and wet though. I thought she must have been drooling pretty badly, so I went to wipe her chin. Then I realized it was not drool. The entire side of her bed, shirt, her head and face were covered in BLOOD. I gasped, ran to the light switch and flipped it on, and ran back. To make sure I was seeing right...and I was. It was everywhere- all through her hair and her pillow was saturated. I ran. I have never run so fast in my life- and I actually knocked my roommate's mom right over. I forgot all about the call button, and ran into the hallway, screaming help. All that kept going through my mind was the doctor saying that bleeding from the nose or ears was VERY BAD. Nurses came running from seemingly every direction. One heard me screaming from the elevator and stopped the elevator to come running. The first one to get there was a man and he asked what was going on. All I remember is saying" her head is covered. Her head is covered." He ran in and immediately got on the loudspeaker. "ALL medical personnel to room 39." Gracie's nurse came running down the hall at that point, she was on break. The man that was in the room was talking to someone, and I could hear him telling the person that there was no point of origin for the bleeding. He was calling for bags of blood- that's how much blood it looked like she had lost. I heard her neurosurgeon paged, and I started to really get nervous. Then, her nurse came out and told me Gracie was fine. Her IV had infiltrated, and she must have had her arms up over her head when it happened. The first nurse that went in didn't know her or that she even had an IV, so he didn't know to look for it. As soon as the nurse told me she was ok, I let out my breath...and passed out. When I came to, it was like it had all been a dream. She was all clean and in a nice clean bed. The only hint that anything had happened was the small blood stain on her new PJ's.

So, the next morning came, just as early as any other day. The sun started peeling through the huge window in the hospital room, and Grace started to wake up. Never mind that she had only really been asleep for 2 hours!! She asked for her cup immediately, and then she wanted some cereal. Of course, the doctor had made her NPO because they planned to sedate her for a CT. So started the game of preoccupation. Before long, we were being moved to a different room, one with a lot more leg room, and where she could have a BED instead of a crib. We had just gotten settled in there and a different pediatric neurosurgeon came in to talk to me. He told me that there was definitely something there, but there was really no way for to tell if it was new or old. His plan of action would be to watch HER, to watch for any signs of a worsening bleed. This was right up my alley. It probably seems as though I really enjoy having her go through CT's- but I don't. He told me all of the signs of it worsening- blood or drainage from ears and nose, worsening headaches, vomiting. He left, and I felt much better about everything.

Later in the evening, we changed rooms again. They decided she was stable enough to go to the Intermediate care instead of the PICU. I was none too excited about this, simply because it was late evening and I had gotten used to those nurses. We got everything moved over and got to know the new nurse, though. Gracie and I were out walking the halls and she met up with a family. It amazes me how quickly she can get a hold of someone's heart. She just sat and talked to that family for a good half an hour. When we left, the grandma thanked me for spending time with them...she said Gracie had just made their day. What a blessing!!

Later in the night, I got a real scare. As a matter of fact, I even passed out! More on that later though...

Another day...another hospital.

Let me just start this off by saying- I do not have some strange hospital fetish. Quite honestly, I'd much rather scope out the local shopping than the local neurosurgeons when I go on a trip. That doesn't seem to be what's in the cards for me at this point, though, LOL. So on to the explanation!!

Gracie starts school on September 8th. SCHOOL!! Until then, she is on "summer vacation" from all of her therapies. So, we decided to do a bunch of fun stuff in the next 2 weeks, beginning with a trip to PA to see my brother and his family. We got there on Monday, and she was beyond excited. She talks about my niece and nephew incessantly, so she's always excited to get to see them. The plan was to stay until Wednesday morning, then head straight to Rochester for an EEG. We were having a TON of fun, the kids were playing and having a great time--then Gracie fell. I was right there and saw the whole thing. She was crawling up the 2 small steps to Cassie's bed, lost her footing, and fell. I reached out and caught her, but not quick enough. She, OF COURSE, came down on the shunt side of her head. After close inspection, I decided she had hit her ear, because it bruised up quite quickly. She needed some comfort, and then she was right back to jumping in the bed and playing with the kids. Like I often do, I shelved the injury. I knew that I would be doing neuro checks later on, though!

 

Fast forward to the next day. We went to Sonic ( a drive up restaurant) with the kids. They don't have bathrooms, so I walked her to a grocery store across the parking lot. She was dragging quite a bit, and I asked her if she hurt, but she said no. Then when we got in the store, I told her to look up at something on the ceiling. She looked up, and then quickly said "Mommy, that hurts." and looked down. I asked her over and over if it hurt to look up and she continuously said yes. She hadn't had a nap though, so again, I shelved it. When she gets tired, she often says that things hurt, just as a way to get out doing it. Half an hour later though, we were playing putt putt golf, and she just suddenly threw up. That's when I started to worry. So, I packed her up, amidst many tears, and took her to the hospital. We got there and it was crazy!! The hospital is right in Harrisburg, and it's not a great neighborhood. After we got triaged, the people in the waiting room told me they had been waiting 8 hours. I felt terrible, because I knew we were going straight back- but thankful at the same time that the hospital recognized the time sensitive nature of her problems. Within 1/2 hour of being there I was really wondering why I'd even brought her. She was acting perfectly normal, she was able to look up, she hadn't thrown up again. I decided to stay though, just because of all the DIFFERENT symptoms. We went up for a CT scan, she had some blood work, and a chest x- ray ( for what I have no clue- I think all of her DX's scared the poor doctor!)...and then waited. And waited. And waited. Just when we thought we couldn't wait anymore ( 3 am), the doctor came in. I FULLY expected him to say that the CT looked fine, and that we could go home. Instead, he told me that the radiologist had found a subdural hematoma, and that we would need to be transferred to Hershey to be followed by a neuroSURGEON. The radiologist had even called in a second opinion. So, of course, I got scared. The doctor set up an ambulance, I paced, my mom and Josiah came, I paced. The ambulance got there and I walked her out, kissed her and jumped in the car to do chase. It was quite a chase too...she drove like a madwoman. 

We got to the Penn State Children's Hospital and went to the 7th floor PICU, where we were met by a neurosurgeon. He looked over the scans right away, scheduled another CT, and made her NPO. Basically, he was planning on surgery. Her blood pressure kept raising with each new reading, which is not a good sign. We got her settled in, and I settled in for a very fitful night.

My poor little sweetie in her straightjacket so the nurses could take her blood. This BROKE my heart. We were taking pictures to try and calm her down, but it didn't work.

 I will finish tomorrow!

Forgiveness...

I write this blog with the intention that one day, my children will read it. I pray that as they look over the pictures and see all that has happened in such a short time- all that God has done for us as a family- that it will make it real to them. See, we as adults are getting all of the blessing from these trials. Gracie and Josiah have not yet learned to walk with God, or what a sweet fellowship there can be---especially in times of great need. I've often said that I got extremely close to God while Gracie was in the NICU. That is a blessing, but it's certainly not the way it should be. I was not right with God when Gracie was born, or for quite a few weeks afterward. Oh believe me, I cried out to Him and begged Him. I held Him at His Word for many things...but I was not right with Him. I was angry at Him. In my human mind, I didn't believe that He had listened to my prayers while I was pregnant. Or, maybe He had, but He just didn't care enough to answer them. It took weeks for me to allow Him to comfort me. It is one of our most fervent prayers that when our kids go through the storms of life, they will ALREADY be in sweet fellowship with Him. That when hurt and heartache come, they can cry out to Him and receive His comfort right away- without feeling the guilt or shame that come along with USING God only when we need Him. I praise the Lord, that when all of our health issues began in November, we were both enjoying a close relationship with our Savior. What a difference that makes during a time of REAL trial!

A while back, I posted about the lady at WalMart who gave unsolicited advice about potty training. At the end of that post, I gave my kids some lessons to be learned, but I forgot the MOST important one. Be forgiving. My sweet Gracie girl, people are going to hurt you. People are going to ask you stupid questions and stare at the braces on your legs. People are going to tell you that the medications you take are unnecessary. People will make fun of you because you are not exactly like them. Josiah, you will have to watch as this happens, and if we train you right---it will hurt you to see your sister hurt. Kids might make fun of YOU because you lag behind with your big sister. BE FORGIVING!!! Always remember that people are just that---people. Be always ready with a smile, a quick explanation, and love- then go to God (and Mommy) with your tears. We love you both.

"But I say unto you which hear, Love your enemies, do good to them which hate you, Bless them that curse you, and pray for them which despitefully use you. And unto him that smiteth thee on the one cheek offer also the other; and him that taketh away thy cloak forbid not to take thy coat also. Give to every man that asketh of thee; and of him that taketh away thy goods ask them not again.  And as ye would that men should do to you, do ye also to them likewise. For if ye love them which love you, what thank have ye? for sinners also love those that love them. And if ye do good to them which do good to you, what thank have ye? for sinners also do even the same. And if ye lend to them of whom ye hope to receive, what thank have ye? for sinners also lend to sinners, to receive as much again. But love ye your enemies, and do good, and lend, hoping for nothing again; and your reward shall be great, and ye shall be the children of the Highest: for he is kind unto the unthankful and to the evil. Be ye therefore merciful, as your Father also is merciful. Judge not, and ye shall not be judged: condemn not, and ye shall not be condemned: forgive, and ye shall be forgiven."

Challenged.

Yesterday was a challenge. The Carbatrol seemed to have full grip on my sweet girl, and I was not dealing with it well at all. We had a great, fun day planned...and Gracie went through it in a haze fueled by some very bratty moments. The day culminated with a feisty almost 4 year old who did not feel the need to sleep. Which makes for a mean mommy. The she curled up in my arms, laid her head on chest, and we talked. I showed her pictures, and she talked about the people in them. She misses her friends from St.Mary's...and she remembers them all by name!! That seems pretty good for a child who's "brain is SEVERELY deformed.", right? I think so.

Well, the day over, I crawled into bed, feeling a like an ungrateful worm. Which I am anyway, but I felt extra wormy last night, LOL. 

Yesterday, Gracie got her breakfast all over the place, as she does pretty much every day. Her hand eye coordination still isn't as good as it should be, so when she feed herself, it tends to get quite messy.

                    She feeds herself.

 Yesterday, Gracie ran through Wal Mart and almost ran right into an older lady, instead of walking closely to me as I had asked her.

               She's no longer 

               confined to her wheelchair.  

Yesterday, Gracie accidentally missed her potty seat and peed on the floor.

I have never had to change a foley catheter.

Yesterday, Gracie talked out of turn and told me no- more times than I'd like to count.

Just 8 months ago, we were told she 

would never talk again.

Head over to Praying for Avianna if are in need of a real challenge. 

God is good. 

20 years...

It seems impossible that it was 20 years ago that my sister brought my nephew, Georgie into the world. I can remember that day like it was yesterday...I was the baby of the family, so I was excited and dreading his birth- at the same time.

He was the first baby I remember holding, feeding, and changing diapers on. He was the one who I got to play basketball with for hours and push around in his Cozy Coupe. He was the first child I really babysat for, and what an experience he made that! He was the first to call me Aunt Shelle...a nickname that has stuck, through each niece and nephew. These days, James calls me that, and it still makes my heart smile.

As a teenager, he came to live with my parents, and he became so much more than a nephew. He has been like a little brother to me, and more importantly, a FRIEND. When I was ready to give up on church and in reality JESUS, a few years back, it was his strong desire to be in the bus ministry that kept me going. Each week, I knew he NEEDED me to drive him to bus calling, and of course, I would go too. Before long, Jesus got a hold of me, and I realized that I had NEEDED to drive him...not the other way around. He has been my prayer partner many times. I can remember one time, specifically, his Sunday School teacher's father in law was near death. He asked me to pray for him, and we prayed, every day for close to a year for that man's salvation. I will never forget the look on his face the day his teacher gave testimony that he had been saved. He has been my home school student, and we learned together. We would sit and read the Bible together in the morning, and I was a somewhat new Christian as well. I can still hear us cracking up as we went through the names in Chronicles. "I can't say that Aunt Michelle- it sounds like a curse word!"

You're probably wondering why I'm writing a whole post about him on Gracie's blog, right? Now I get to watch through my kids eyes. He is to my Gracie and Josiah what I was to him, all those years ago, and then some. After the stroke, Gracie fluttered her eyes for the first time when I told her that George had come to see her. The doctors played it off as coincidence, but it was the very first sign that we had that our little girl was in there. It was NO coincidence, after her daddy, George is her other male hero. Now, it's Georgie that carries our kids around, teaches them about basketball, watches them when I need to make little trips. It's Georgie that I hear sing Rolled Away with them, and laughing when Gracie tries to say Jehoshaphat.

              20 years have passed so fast. Happy Birthday, George. We love you.

Some thoughts and pictures

Today was Grandma's birthday and we had a fun day all planned. We went to spend some time with my sister and her little boy (since all the rest of her kids are with us!!) at a park near her house. The park has a nice sprinkler set up for the kids to run through, so I packed each of the kids an extra set of clothes and off we went. Gracie was so excited, she just LOVES to visit James. We got there, and they were having a community bag lunch at the park. What an extra blessing...lunch prepared and at no cost! The kids were having a WONDERFUL time, running through the sprinklers and playing. There was a lot of giggles

 and even some screeching. Josiah absolutely loves the water running over him. He will just stand there and let himself get soaked to the bone!

The kids started to get cold (as did Mom, since I went right through the sprinklers with them), so it was time to head down to the swings and slide to let Mr. Sunshine do his job. James went tearing off, making his mom chase him down the hill. Like 2 year olds do. Then Gracie started to run after him, but immediately tripped and almost fell. That's when she broke my heart. She told my niece "I want to run like James does again."

AGAIN. Again? She remembers that she used to run like that??? She remembers and so that means she knows that there is something different about her. Somehow, I had myself convinced that she didn't remember before the stroke. Maybe it's because my life has been broken up into two phases. Before Stroke and After Stroke are pretty much how it is, and sometimes I have to think twice when someone asks me about how she was before. My favorite question is "Was she normal?" Yes, of course she was as normal as she could be (hello, look at her Mom and Dad)!    

Of course, my girl has an unfailing spirit, and as quickly as the thought left her mouth, the "swingslide" came into view and she was tearing away. It left my brain going crazy though. What else does she remember? Does she remember the pain that she felt from that horrible headache? Does she remember the tube down her throat and nose and all of the doctors hovering over her? Does she remember those days when she was blind and the fear she felt? Is that why she is suddenly afraid of the dark? Is she just as scared as I am????

We went on to have a fun day, but it was more somber for me. That word has been haunting me. Again.Thank God, children have shorter memory spans than adults.







Just keep smiling, baby girl!! "A merry heart maketh a cheerful countenance: but by sorrow of the heart the spirit is broken."

Looking unto Jesus

At the beginning of the year, I was challenged to create a theme for myself for 2010. I prayed about it, thought about it, prayed about it, and God kept coming back at me with Hebrews 12:2. 

"Looking unto Jesus..." became my theme for this year. It very well ought to become my theme for every year that He gives me on this Earth!!

I've decided to get very real and personal about the one thing that I have really had to look unto Jesus for this year. This is a hard post for me to write, but I want to be honest. I am struggling with something, every day, even as I write this.

                                                                  FEAR.

I am constantly fearful lately. I wake up in the middle of the night, in a cold sweat, with tears running down my face. Usually three or four times a night. Sometimes, in the middle of the day, I will suddenly feel as though I can't breathe. My whole body feels like it is on fire, and my head starts to pound, out of control. The doctors call these panic attacks. I'm told that it's perfectly normal, because this year has been traumatic. Well, yes it has been traumatic, I won't disagree. I'm supposed to be LOOKING UNTO JESUS though!!! I've read the gospels many times, and I still have not found the part where Jesus had to get off the cross because He was having a panic attack!

Quite honestly, this fear of mine, no matter how VALID, is sin. So, I have decided to meet it head on.  Psalm 56:3 states :"What time I am afraid, I will trust in thee". I CLUNG to this verse back in November. It got me through days of complete despair, because I was TRULY trusting in Him. Now, here we are, 7 months out, and I'm afraid of my shadow. I'm afraid of seizures. I'm afraid of Carbatrol and all of it's side effects. I'm afraid of normal childhood illnesses and fevers. I'm afraid of shunt failure and strokes. I'm afraid of hemiplegia. I'm afraid of cerebral palsy. I'm afraid to let her run and play. I'm afraid to make her stay on the sidelines and watch. I'm just afraid. I'm afraid that it will get to be too much and I'll give up on Jesus. I'm afraid to be this honest and real...but I need to. So, all this to request...please pray for me to keep looking unto Jesus. Please.

The rest of the story

I just love that title...I feel like Paul Harvey!! How fun! Anyway, I petered out on the story there and some people have been questioning how our girly is doing now. So...

She was able to leave the hospital on Saturday, just 5 days after everything happened. Her neurology  team was actually prepared to send her home on Friday, but I declined.  There were still too many unanswered questions for me to feel safe, driving the 2 hours home.

The origin of this seizure is still unknown. While she did have a fever the day that she seized, it wasn't that high. She's had higher fevers many times, even since the stroke in November, with no seizure activity. Sometimes, as the brain heals from a traumatic injury, seizures will occur. She has a lot of scar tissue in her brain, and even a slight temperature can be enough to make things misfire and a seizure begin. That said, she is now on an anti-seizure medication called Carbatrol.We have a love hate relationship with this stuff already!! Of course, I am  very thankful that there is a medication to help control seizures and hopefully, prevent this situation again. As with all medications, it comes with a list of side effects. The first few days, she was HOPELESSLY clumsy. Stand up, fall down, stand up fall down. We felt like we were always saying " Gracie pick your feet up!" or " Straighten your head. Hold your head up high, sweetie!". She had a very hard time holding her head up, and that was VERY difficult to see. She had that hard time when she first woke up in November as well.

We have started calling her our "Sour patch kid". She has mood swings that rival anybody with bi polar disorder that I've ever known. One minute she will be laughing and hugging you, without a care in the world. The next, she is crying and screaming. We are just taking it one day at a time though, and so far everyday has been better. I never thought I would miss the days of having her put up a fight to go to bed, but it was heartbreaking to have her climb into bed at 6:30 or 7, AFTER a 3 hour nap, and fall asleep immediately. She would say " I'm just so VERY tired, Mommy." and within about 5 minutes, out for the night. Then I would cry. The last few nights have been more normal though...a lot of "where's my tup?" and "pray with me and lay with me."

We have resumed therapy, and her therapists do see a MARKED difference in her, especially in her motor movements and the hemiplegia on her right side. ONE DAY AT A TIME!!

Pictures

 

This was right after she was extubated. She was very unhappy, unable to talk, and TIRED.

This is where the doctors shaved the side of her head in order to tap her shunt.

Mom, I'm SICK. Take a picture of me. She cracks me up.

July 7, Strong Memorial Hospital, Rochester NY

After a long night of very little sleep, the nurse came in and said that were going to do a test run to try and extubate Grace. They had done this once the night before, and she had immediately started desatting and forgetting to breathe. So, I was a nervous wreck. She was starting to wake up a bit more though, and the nurse thought it was time to try. She called in the doctor, and the next thing I knew EVERY doctor and nurse were in the room. I knew nothing was wrong, I was standing there and could see her stats, but it was still very unnerving. It's a teaching hospital, so these people need to learn! (Praise the Lord that we live in a country where we can have access to this kind of health care.) Anyway, all of these people came in to watch the extuabtion...and she decided to do it herself!! The nurse had been holding her hands and she turned to get something. I was too far away to get to her in time, and the next thing we knew she was pulling on that tube. That's my spunky girl!! She didn't get it all the way out, but far enough. So, we didn't do a test run...she just got extubated. She did well for a few minutes, and then she had some difficulty, so the nurse put a nasal cannula on her. She hated that, and kept trying to take it out of her nose, even in her sleep.

She fell back to sleep for a while, and then when she woke up, I tried to get her to talk to me. The nurses had told me to try, so we could see if she was trying to form words. Well, she just stared at me blankly. The best I could get out of her was OW.  My mom got there, and she smiled a little, but really she didn't say anything. I was VERY worried at that point, because Grandma is Gracie's FAVORITE person. Just a few minutes later, Carolyn and Sue came walking in. As soon as Gracie saw Sue, her face lit up like a Christmas tree and she said "Grandma Sue!!" Her voice was tiny, just like it was when she finally started talking again after the stroke. It seemed somehow fitting to me, that she saved that reaction for the person who did CPR on her. She was awake for a bout 5 minutes and then she fell back to sleep. At some point, one of her doctors came in and told me that her CSF had looked clear, so there was no sign of a shunt infection. He said that so far, her blood work had been good as well. He was continuing to give her the strong antibiotic, just in case. The last thing they wanted was for her to spike another temperature and seize again. He had ordered an EEG for her that day, to see if she was still seizing at all. He honestly had no answers for me, and at that point, told me we might never find out WHAT caused the seizure.

In desperate need of some clean -up, I headed to the RMH with Josiah. While I was there, she had the EEG done. I got to miss out on seeing all of those electrodes all over her head. It's ok, seeing that once is definitely enough. When I got back to her, she was awake and had a little more energy. She was staying awake for about a half an hour at that point, and trying to talk. She asked for a Popsicle and said "YUCK" to the purple one.  To me, this was a very good sign!! Not much really happened from there on out that day...late that night a doctor told me that she felt very strongly that she had viral meningitis. Hand, foot and mouth disease is one of a group of enterovirus' (it's real name is Coxsackievirus). Most kids who get it get a fever and discomfort for a few days, and nasty blisters to boot. Due to Gracie's prior brain injuries she is more susceptible to getting the complications. You know those warnings  that you read on the internet that say " 1 in 98 children may develop viral meningitis or encephalitis and need hospitalization"? Well, that's my Gracie girl!! Basically, the treatment for viral meningitis is just a wait and see plan. There is no antibiotic for it since it's a virus (though she was still being covered by antibiotics). So, we waited for more test results and watched her sleep, knowing there was little else we could do.

July 6- Strong Memorial Hospital, Rochester NY

So, when I got to the house, my niece had already packed us up and had the car seats ready to go in my friend Carolyn's car. There was no way I could drive, so she offered to drive me up and spent the night. I ran into the house, grabbed a couple other things, made a quick phone call- and we were off.  About halfway there, my phone rang from my mom. I heard "Grace is..." and then I lost reception. Ahh. That is the scariest feeling. I called her back on Carolyn's phone, and her doctor had met them on the roof and wheeled her straight to CT and X ray. His name is Anthony, and he is the resident that assisted with Gracie's last shunt surgery. I'm not sure if he takes such an interest in all of his patients, but he STAYED with her the entire time. When I finally got there, he told me that he didn't leave her at all, because if anything WAS wrong shuntwise, he was carting her down to the OR, and getting verbal consent from us. He was in the room with her when I walked in. Papers in hand...authorization for him to do a shunt tap. He shaved a very small portion of her hair, directly over the shunt, and stuck a needle right into the reservoir. This gave him a sample of Cerebral Spinal Fluid, which would then be tested for infections. While I wanted an answer, I PRAYED that it wasn't a shunt infection. Shunt infections require complete removal of the entire shunt system, and an external shunt is placed, for 10-14 days while the infection clears. He got the CSF and I went back into the room. He told me that his first thought was that this was not shunt related. She didn't have a high fever or other infection markers, and the shunt looked fine. This was reassuring, but left us really questioning. Everyone got ready to leave for the night, and I prepared a bed in the chair beside Grace. She slept through the night, what with the fact that she had enough sedative in her to keep ME asleep for a week!! I think I got about 30 minutes of sleep that night, which I am thankful for. I kept getting woken up by a VERY attentive nurse. Karen never even took a break that night, she watched Gracie all through the night, as I sat there and waited for results from the blood work and CSF tests. Waiting and wondering, what in the world was going on with our girl. Most of all, we were praying...and thanking God that He already knew.

The seizure, part 2

I walked into the hospital, all by myself. I wanted to turn around and run the other way. I wanted to pretend none of this was happening. There was NO reason for any of this to be happening!! She had barely even been sick. Just a little fever...Gracie has had countless fevers these past almost 4 years. I went in though. I walked in, and saw her- still lying there, her hands and legs moving in these strange, non human looking way. Her eyes were mostly closed, but open just enough to see that she completely unresponsive. The ER doctor tried to open her eye to check her pupils, and couldn't even get it open. Her skin had a bluish tint to it. As I said, the nurses were bagging her, so her chest would rise and fall in a completely unnatural way. At one point, I turned and saw the NICU social worker, Mary, and I went running to her. Thank God she was there. She took me to a private room, so that I could just pray. She calmed me down, as much as she could...and she held me up every time I started to head to the floor. I only left to pray for a few minutes, and then decided that Gracie needed to hear my voice. So, I went in and sang to her. The doctor needed space, so I started singing in the hallway. I was walking all through the hall, singing How Great Thou Art and It Is Well at the top of my lungs. What a looney tune I must have looked like!!

I went outside for a few minutes, and Gracie's Sunday School teacher came running in. Tammy is my person. I look to her as a pattern, the way I want to live my life. So, when she came running to me, I gave in. The tears just started to flow. I don't know what I said to her- I probably didn't make any sense. I can remember at one point I heard the doctors say that we had a great support team. They have no idea. We went back into the hospital and just sat and waited. Our Pastor came, and he waited. My mom's best friend came, and waited. A good friend of mine, Jackie, came- and waited. There was nothing else we could do. I talked to Gracie and prayed and sang. I drank water out of every cup I could find, whether it was mine or not. Finally, they were able to intubate her and she headed off for a CT.

In the CT waiting area, I asked if anyone had a Bible. My mom always has hers in her purse, and she didn't let me down. I sat there and tried to read...but I couldn't see the words. Our Pastor came and took the Bible and read to me, Psalm 27. It's one of my favorite passages, so that's what I asked for. He had a hard time getting though it, he was choking up. It was scary to hear him like that, because he keeps a very good handle on his emotions. It took a long time to do the CT, because they had to re arrange all of the tubes. I poked my head in, and my favorite CT guy was in there. I looked at him, and said "She won't need a coloring book this time". Finally, they came out and we headed back to the ER. Dr. Kung came and told me that her shunt looked fine. I was SHOCKED to say the least. At this point, we knew we were heading to Rochester. Mary came and gave me Children's Miracle Network money to help with the costs. We decided my mom would ride with Gracie. I knew I couldn't do it, because I would be trying to "help". (I am a very controlling person at times.) It all happened so fast, from the time I knew she was going until the helicopter got there. I rode in the ambulance with her over, sang Jesus Love Me and The B-I-B-L-E to her. I held her hand and started to sing It Is Well again...and then we were already at the helicopter pad. So, I asked them if I could have a minute. I prayed with her and told her how much Mommy and Daddy love her and how much Jesus loves her. I kissed her and watched as they loaded her into that helicopter. AGAIN. We didn't wait for the helicopter to leave. Our pastor prayed and we took off, so we could get Josiah and get on the road.

The seizure, part 1

First of all, thank you so much to everyone who has been praying for Gracie and for all of us. AGAIN. We really do appreciate every single prayer that goes to God on our behalf. I am going to write this post somewhat like a timeline, so that everyone can know exactly what happened and when.

July 4, 2010- 4th of July picnic at church. Gracie was so happy and played, played, played the whole day. Toward the end of the day, I wondered if she was feeling a bit off, but she had been in the hot sun with no nap, so I shrugged it off.

July 5, 2010- I found out (remembered) that the kids had been exposed to Hand, Foot, and Mouth disease. It was going around BEFORE we left for Florida, but what reminded me is that a couple of kids from church had it when we had come home. I was concerned, but not too badly. I figured she might get it, since she gets everything that comes within a mile of her, but it's a normal childhood illness. I called her pediatrician's office, just to ask what to do if we saw any signs. The nurse said that there wasn't any treatment for it, but given Gracie's conditions, they would want to see her immediately if we saw any signs. Lo and behold, that evening she had a blister on the inside of her hand. So, we went in, and I was basically told to treat her with Tylenol for discomfort. We went home, played, went swimming, and went to bed. All was well.

July 6, 2010-
8 am-Gracie woke up acting very off. Sad to say, but she was much too sweet for my girl. She had no desire to eat or drink anything. So, I took her temperature and it was 101. I called the pediatrician again (any temperature warrants a call for us), and they wanted to see her. We chose not to re-run any CT scans or anything, as she looked and acted neurologically fine. Her throat was patchy red. The only concern was that her temp had gone up to 103 in a little over an hour. The nurse gave her a dose of Tylenol there, and then we went home. (With a stop at Wegmans to get freeze pops!!) 
12pm- Grandma takes Gracie into the pool. Her temperature had gone down and I was fine with her going in for a while. She was starting to act VERY tired and cranky, so I took her in and laid her on the couch. I ran to the pharmacy to grab a new thermometer and some different tylenol for her. When I got home, she was awake, talking to my nephew.
Around 2- 2:30 pm- My mom went to take her temperature for me. She joked with me "Do you want the good news or bad news?"...and then Gracie started walking to the bathroom, like she had no clue where she was going. Her eyes rolled up into her head and I knew she was seizing. I had my mom put her on her side, and I called 911. I yelled for help. I kept expecting the seizure to stop. Before her shunt failed, she had a seizure, and though it seemed TERRIBLE, by the time 911 got there, she was coming around. This time, that wasn't the case. As I waited for the ambulance, she stopped breathing completely and my mom's best friend had to begin mouth to mouth resuscitation.The ambulance drivers got there and immediately yelled into the walkie talkie things that this was a 3 year old girl in a full code. I remember my knees starting to go out from under me, but I stayed up. They worked on her for just a couple of minutes and then got her right into the ambulance. At this point, I knew it was bad. I've had many experiences with ambulances and I know they usually try to do what they can in the house. I got into the front seat, and we took off. We were flying through Horseheads, at about 65 miles an hour. I kept asking if she was breathing, and they said yes, but not well. They were giving her anti seizure medicine, but it was NOT working. When we got almost to the hospital, the EMT told the driver that they would need some time when they got to the hospital. They were trying to intubate her, but her airway was completely closed. I got out of the ambulance and watched as they tried to help my baby, and she was completely lifeless. At that point, I dropped to my knees, right there in the ambulance bay and cried out to God. I didn't get up until the doctors came out and told me they were taking her in to the ER. They had been unsuccessful at intubating her because her airway was still suppressed from the seizure, and 2 IV sites had already infiltrated. They had given her DiaStat, Phenolbarbital, high doses of valium, zonegran, and depakote. and finally had to use high doses of Fentanyl. This whole time, they were bagging her with oxygen, because she was still not breathing. This lasted for about 40 minutes.

Florida

We are in Florida this week, enjoying a visit with my grandpa. Gracie is enjoying herself IMMENSELY!! Yesterday, we went to the beach for the first time since the stroke. I was very concerned that she was going to hate it, because she has a hard time with the sun now. I bought her a pair of sunglasses and a cute visor though, and she actually wore them. The kids played in the sand (Josiah ate a pound and a half and is now constipated, LOL), Gracie went right out into the water (with me, of course) and they even saw their first dolphins!! There were three, so close to shore, we thought that one was going to become a landlubber!!

Last night, we visited Bible Baptist Church in Deland. They had a very nice nursery for the kids, but when we were leaving, Gracie made sure to tell us " That was so nice, but it was not MY Baptist church."

I will post pictures as soon as I can. There's no WiFi in my grandpa's neighborhood (the humanity!!), so I am using his computer. I hate to upload all my pictures to him, so I will wait. I actually just read a good post on Yada Yada Yada about waiting on the Lord. Guess I should try it!

Children's Miracle Network

Gracie and I were on the local Children's Miracle Network telethon this past weekend. The first video is from June 2008, they used both of our video's. She did a good job, eve though she was nervous!!

Such a sponge!!

Gracie has turned into such a sponge lately!! It's funny, too, because sometimes she comes out with things and I didn't realize that she had even been paying attention when I talked about it. For example, today we went to a picnic for our church softball team. After we had eaten, one of the boys on the team saw a pair of sneakers hanging in a tree. (Why do people do that anyway? Around here, you always see sneakers hanging on phone lines. What's the use in that??) Anyway...he climbed the tree to try and get them. It became quite the spectacle, as he couldn't crawl out onto the actual branch they were on, it would have given under his weight. So, he had branches and was trying to bat them down. His dad kept yelling funny little comments, and then talked about persevering. Well, during all of this, Grace was BUSY playing on the slide. I never saw her look twice at what was going on. However, as she was trying to fall asleep, she said, "Jordan persepeered and he got the shoes in the tree, Mommy?" So, I got to explain what perseverance is... I should have just given her a picture of herself.

Here are some pictures from the slide. The girl behind her is Alura, my friend's niece. I can not say enough about this child. She amazes me!! Whenever she is around Gracie, she takes her under her wing and not only protects her, but makes sure she gets to have fun and play too. This afternoon, I overheard her saying " You just have to be more patient with her. She can do it, but just a little slower than us." She's such a blessing to me.





And for good measure: the sneaker escapade!!



By the way, Josiah is walking!! He is turning into such a handsome little MAN. it amazes me...every day he's less of a baby. This is tonight. My friend washed him up after dinner for me, and she spiked his hair.