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.