Monday, May 6, 2013

I am certainly not the first mother to be told the word never. Kristy Yamaguchi and Mia Hamm would never walk normally due to severely clubbed feet. Albert Einstein would never read or write, because he was "simple". Agatha Christie would never read because she saw the written word backwards. Both George Bush's would never amount to anything because they simply couldn't pay attention.

I was told never many times.
"She'll never make it through the weekend, but if she does, I'll see her Monday." Neurologist, September 8, 2006.

"She might learn to crawl and stand, but she'll never walk without assistance." Same neurologist, September 2007.

 "She's never going to walk again." "Might as well put a g-tube in, she'll never eat on her own again." "She'll never be able to play sports on any kind of a team."  And MY personal FAVORITE. "She'll NEVER be the same child you knew." All December, 2009


That's why I NEVER say NEVER...

Tuesday, September 25, 2012

She gets it.

I had three years in the world of "normal"parenting. Even though Gracie was born 17 weeks early and was globally developmentally delayed, I would never classify myself as a parent of a special needs child. Selfishness...pride...I don't know why, but it just wasn't a term I could come to grips with. I can remember VIVIDLY the night that I realized that I am, indeed, a parent of a special needs child. I cried. I paced the halls. I walked outside the rehab doors into the cold, starless, early January night and I yelled at God. I told Him that I wasn't strong enough to do this. Then I walked back in, put a blanket around my shoulders, climbed into bed with my girl, and went to sleep. I woke up the next morning, with a little realization. God had been waiting three years for my little melt down. He's so good, so merciful, so long suffering- He would have waited 30 years for me to realize...I am not strong enough, BUT HE IS.

At 6 years old, and with a traumatic brain injury, Grace is starting to notice that there are difference between herself and some of the other kids. She EMBRACES it. She acknowledges the differences and then moves on. At 6 years old, God has already shown Himself to her. It's obvious. She has a couple of really good friends at school. One is Jacob, the other Neveah. Yesterday, I asked her what she likes to do when she plays with them at school. "We laugh, Mommy. We love to laugh. I always laugh." And she does. My daughter has this DEEP, belly laugh, that puts a smile on almost anyone's face. I often squelch it. I try to tell her it's an inappropriate time to laugh. When is it ever inappropriate to bring joy to someone else?

This morning, I was scheduled to work the book fair at her school. Luckily for everyone involved, I am not the master scheduler, because it just so happened she had a field trip at the same time. I was trying hard not to be seen, but as I walked from the main office to the library, there she was. All lined up, holding the nurses hand,  ready to go. (She has to have the nurse with her whenever she leaves the building, due to her seizure disorder and need for rescue drugs). The mommy in me got the better of me, and I had to go over and say hi. She was so incredibly excited. She was going to the apple orchard and her mommy was going to work the book fair. I gave her a big hug and kiss and told her to have SO MUCH FUN, and started to head back toward the library. Then I heard, "Mommy, mommy!" I got a little nervous, wondering if she wanted me to go with her now that she had seen me. (I wanted to go with her, but I had committed!) She came running to me and said, "Mommy, "her friend in her class's" Mommy is BROKE. She didn't get to buy a book today!!' She was so upset she started to cry. I got down and hugged her and told her it was ok. And she smiled, and gave me that laugh. "Hahahahaha!!" Then she took off. Over to the nurse, who I noticed was holding her backpack,and she asked her for it. She came back to me, frantically pulling stuff out of her backpack, until she found the $10 I had given her to buy books. "Mommy, can we buy Pinkalicious for "_____"?? The brarian said I had enough." Just then her teacher rounded the corner and saw me. She knew I was coming to work the sale and she came over to talk. She said that the class had gone to the sale during homeroom, and that Gracie had chosen a book for her and one for her brother. She said that when her friend started to cry, though, Gracie started to cry too. She wouldn't buy her books. She would wait for her mommy to come because she knew her mommy would let her get her friend a book too. I stood there thinking..."she gets it." So, we went to the library- Gracie and Mommy- and we bought Pinkalicious. (And the 2 books she had chosen). We walked back to where her best friend was standing, still sad, and Grace gave her that book. And she belly laughed. Her friend beamed. I'm pretty sure God did too.

I AM a special needs mom. And I am perfectly fine with that. See, I have a lot of special needs as a mom. God knew that, so He gave me them.
Gracie and Josiah with my dad.

God is good.
"...to remember the words of the Lord Jesus, how he said, It is more blessed to give than to receive."
Acts 20:35b

Sunday, July 1, 2012

These halls...

These halls...so brightly painted, and beautifully decorated. Done with a purpose in mind...to take the minds of sick, young children far away from the hospital that they are stuck in. Halls with beautiful giraffes, zebras, and monkeys frolicking. Pinwheels that get spun 500 times a day, as little faces light up, watching the colors swirl. The only fireworks most of these children will enjoy this 4th of July. Halls with big purple dinosaurs that sing sweet songs, and statues of dogs with frogs on their feet. Walk further, and a beautiful carousel, complete with twinkling white lights, whisks you away to the state fair for a few minutes. Just another few feet, and the fish tank comes into sight. Built into the wall heading to the play deck, it's always a big hit with the kids. These halls serve a purpose, and they serve that purpose well. Faces dull with the ravaging effects of chemo light up at the sight of Barney. Children run to be the first one to play Bingo, as Mom and Dad race to keep up with the IV pole that is attached to their child.

These halls...sitting on the bench in front of Barney is where I met McKenzie's grandma. Josiah and McKenzie took turns turning Barney back on. She's 2. When she was 6 weeks old, her parents brought her in to the ER, because she just wouldn't stop crying and she never stopped throwing up. What they thought was bad reflux soon became medulloblastoma. Brain cancer. Soon, these halls became more than just a place to be entertained for a few minutes. They became the halls of their home. 7 surgeries and months of chemo and radiation later, and Grandma said with a big smile- "She's in remission now." McKenzie laughed and danced with Josiah, oblivious to the life outside these halls.

This past Saturday, I watched as the monitors beeped and beeped in our room. So many things were going wrong, the monitor didn't know which way to beep first. The long drawn out sound of apnea, followed by the high, ear piercing, shrill of a brady. Just as that stopped, the steady beep, beep, beep that means a tachycardia. All the while, flashing red with O2 levels in the 50's. I watched as doctors and nurses flooded the room. Men and women called the Critical care RESCUE team. I listened as a CT was ordered of Gracie's brain...STAT. I fell to my knees when Anthony walked in. If only that one man could ever know what he means to my heart. In the midst of chaos, somehow he always comes at just the right time, and does exactly what needs to be done. I overheard the nurses talking about a Valium FOR ME, and I got it together to take a quick walk and really get it together. Out to the zebra and monkeys and giraffes I went. I stood there, sobbing, trying to talk to John, remembering 2.5 years ago. A sweet three year old, unable to really talk due to a massive stroke, would get excited and whisper "zoobra" when she saw that black and white striped horse. Now, that sweet 3 year old is an even sweeter 5 1/2 year old; who has taught her 3 year old brother that that is IN  FACT a "zoobra" on the wall. As I stood there, trying to gather myself, a hospital employee walked by. She cleans the rooms in the PICU...when we first got here this time, I remembered her from 2009. See, as she cleans the rooms she smiles and hums "How Great Thou Art." She walked by, saw my face, and looked at me and said sincerely, "I'll pray." With that, I was able to stand and face the monitors again. Once again, leaving these halls with my tears.

Around the time we were finally getting Gracie stabilized and back to the PICU, there was a silent splash in a backyard pool a few towns over. A frantic mom and dad calling 911 and watching helplessly as their 4 year old son was loaded into a helicopter to come to Strong Memorial PICU. Before long, these halls were abuzz. That Critical Care Unit I talked about? They were loading their backs with every instrument and piece of equipment you can think of as they headed into those big, silver elevators and up to the helipad. I watched as the stretcher flew by us and into Room 5, doors quickly closed. Later, as I passed that room, a silent prayer automatically consumed me. Human nature is to look, and see a still body, a tube in his throat. Mom and dad always by his side, holding his hand and reading his favorite books. On Tuesday, his dad sat in the family waiting room with some other members of his family. We spoke. I did not recognize him, for before that moment, I had only seen the top of his head, buried in his sons chest. He told me his son's name... Drake, and that he had almost drowned. I asked him if they had come in on Saturday, and he said yes. I told him that I had prayed for them and his son every day and would continue to do so. He looked up and said simply, "Thank you. That means everything." Friday afternoon, Gracie and I passed by the room on our walk to the playroom. I noticed the room was full of family...but didn't think much of it at the time. The PICU only allows 4 visitors at a time, but sometimes they bend the rules if family is visiting from out of town, etc. A couple hours later, the bitter echoes of sobbing told me differently. Glass doors were slammed shut and curtains were quickly closed. I was asked to walk the other way when I left to go to the restroom. A few hours later, Room 5 was empty and a little boy that I had never met had forever changed me. These halls. They have a story... a story that all too often is left half untold.


Today, I will walk down these halls one more time. Pushing a wheelchair with balloons attached, I'll stop as every pinwheel gets spun, each animal gets said hello to, and each bright light on the carousel gets oohed and aahed at. I will push the down button on the elevator, as the play button is pushed on Barney over and over. We will give Lobo the dog and Goli-gee the horse "see ya next time"  hugs and kisses. The familiar ring of the elevator will sound, and I will push that wheelchair inside, looking down into the clear, bright blue eyes that had spent the last month so cloudy and dull. The elevator doors will close, but not before these halls once again hear the refrain of this mothers heart.

Thank you.
Thank you.
THANK YOU.

These halls. To some, just two long walls of a a hospital unit. To us... halls of hope.

Wednesday, June 27, 2012

June 25, 2012 Surgery Day

Surgery Day. We were scheduled to be in pre-anesthesia at 7 am and in the OR at 7:30. They came up to get us at 6:45. At this point, her shunt had been clamped off for about 3.5 hours. The goal was to make her ventricles large enough so that her neurosurgeon could thread the new shunt catheter without problems. The night before had been almost uneventful, then at about 5 am she started to have bradies, followed by tachycardia, followed by desats into the high 60's. Her O2 was at half a liter when she went to bed the night before, and by the time she got to the Surgical Prep area it was on 1.5. No sooner had we gotten downstairs, and she started vomiting. The nurses started asking me tons of questions. "Did she eat after midnight?" "Did she drink?" "How long has she been vomiting." Just then the anesthesiologist on her case came in and saw her vomiting. She asked how long that had been happening, and I said for about an hour. The nurse told her it was probably because of the shunt being clamped. The woman gasped and said "What in the world!!" She looked scared. The anesthesiologist looked nervous and scared. What a way to put mommy's nerves to the very brink. I asked her why she was so worried, and she said that the vomiting could cause all kinds of problems, blood pressure could get bad, and she could aspirate. At this point, I was starting to think the externalize shunt wasn't such a bad thing to deal with. Then her neurosurgeon came in, took a look at her and said- "Let's unclamp this." Which he did, and I saw an immediate change in her. He got all of the paperwork and consent forms for me to sign, and I asked him how long the surgery would be. He said maybe two hours.Hugs and kisses were given, and we went to the waiting room.
8:10 am- I realized I was supposed to check in at the waiting room desk. I went up and talked to the girl an she said Grace was in the OR, and the doctor would call when he was done.

9am- I was starting to get very nervous. I went upstairs to get coffee (which I didn't drink) and Josiah a cinnamon roll (which he did eat). I came back up and immediately asked for news, but there was nothing yet.

10:15am- The 2 hours had passed and I was about as anxious as I get. I kept reminding myself that it takes a few minutes to get her under, then they had to intubate her. But, I know her doctor, and I know when he gives a time he figures all that in. He also highballs his guess, so as not to make the parents too scared. I was scared. Very scared. I started to cry. I tried so hard not to, I didn't want to scare the other parents in the room, or Josiah, but I couldn't help it. I just had to cry. I begged God on my babies behalf. I had no idea what was going on in that room, why it was taking so much longer than planned, but I knew He did.

11am- Still no word from the surgeons. I got a text asking for news from one of my dearest friends. I told her we had no idea what was going on yet. She sent me back-" I know you know this, but she is in God's hands. He is guiding the surgeons right now. She is not alone in there. Jesus is by her side & right by your side too." Did I know that? Of course I did. Is it really easy to lose sight of that truth when you're scared out of your mind? Oh yes. Thank God for the reminder. I was suddenly taken back to the day in CT waiting room, July 6, 2010, as she was seizing uncontrollably. Our Pastor sat with me and read Psalm 27 to me. I didn't even need to open the Bible right then,  I could hear Pastor read every verse to me. That was one of the worst days of my life, but from it comes one of my sweetest memories.

11:26am- The girl at the desk called "Parents of Grace Richards?" I almost killed people to get up and to the phone she was directing me to. I got in there and the nurse was on the phone. Dr. Silberstein wanted me to know everything was OK, just taking much longer than he had anticipated. She had been stable the whole time, but she was proving to be very tricky to thread the catheter into her atrial vein. I was able to breathe again. At least I knew she was doing ok in there!

1pm- Dr. Silberstein came in. He LOOKED exhausted. He told me she had done well and that the other docs were closing her up. He said that when he went into the neck this is what he expected to find:
Instead, he found this:
Hahaha...should we have been surprised? This is Grace we're talking about, after all! A little over 3 and 1/3 of the almost 6 hours total were spent trying to thread that catheter into her aorta. Finally, he had to go through her jugular, which is a bit more dangerous. She was a champ through it all...never dropped any of her stats and kept her BP right on target. He told me her neck would be very sore, she had been through a LOT in there. Not surprisingly, she hasn't complained of her head at all- just the neck.

2pm- They came and told us we could go back to recovery. I walked in and she was sitting there, awake, and asking for food! She downed 2 full containers of apple juice in the first 15 minutes I was in there. She also had NO oxygen on at all! She looked amazing. She did make me a wee bit nervous when she started talking about purple unicorns in fish tanks, but she was still coming out of some pretty good sedation. Within the hour, we were back up in her room in the PICU. Other than some massive pain, she actually had a pretty uneventful night. Pain was controlled with oral vicodin, so she stayed pretty sleepy through the evening/night.

Breakdown of the shunt- She now has a programmable VA shunt. We have to be very careful around magnets now, because that is how you change the settings on the shunt. Only a member of the neurosurgery team does those changes. The ENTIRE shunt system is completely new, since bacteria did grow out on the old system. The shunt begins in her head like before, but instead drains to her heart and is then recirculated through her body in her blood system. She will take a baby aspirin every day from now on, and we have to be even MORE vigilant about fevers and infections.

Thank you to all who have been praying so faithfully for our girl. This has been quite the valley...in many ways, even scarier for me than the stroke in 2009- but God is ALWAYS good.

Sunday, June 24, 2012

Operation

The operation is scheduled for tomorrow morning at 7:30. Due to the infection present in her stomach, the neurosurgeon has chosen to do a different procedure, called a Ventriculo-Atrial shunt. Basically, instead of the shunt going to the stomach cavity and being reabsorbed, it will now go to the atrial vein.
These are a couple of illustrations:

The shunt pictured on the left is what she had until the externalization took place. The shunt on the right is what she will be getting tomorrow. The best description that I can find of how it works is -"
What is a VA Shunt and what does it do?
This is a device which drains the extra fluid in the brain into the right atrium of the heart. A shunt catheter is placed into a vein in the neck and threaded down where the vein joins a larger vein called the Superior Vena Cava. This large vein returns blood to the right atrium of the heart . The cerebral spinal fluid is added to the blood supply and is absorbed."

This type of shunt is not used as often as VP shunts. She will probably have to take a baby aspirin every day to help keep her from getting a blood clot. 

Sorry this is so incomplete...I feel like I know so little about all of this that I can't really put it into words.

Monday, June 18, 2012

June 14, 2012 Surgery Day

Well, last night, Dr. Sandwell came in and told me that they had decided to go ahead with the externalization of the shunt. He almost sounded like the neurosurgery team was conceding, and so I asked him if we were doing a dangerous surgery for no reason. He said that even if the shunt came back completely uninfected, her body would still heal quicker WITHOUT a foreign body inside. I really like him. Where Dr. Silberstein is very loud and tell it like it is (which I like also), Dr. Sandwell is more quiet and reserved. He stands there and just listens. He said we would actually be moving to the PICU before the surgery even happened, and would not even have to go to a downstairs OR unless something came up. We would do the whole procedure in the PICU sterile procedure room.

Well, this morning was pretty much terrible. Grace is tired, hungry, and thirsty. She woke up about 6 times in the night, just screaming and hollering. These nightmares are terrible. She'll lay there and just cry- "No, not a needle!! I don't want a pokey! It hurts!" It is so heartbreaking to hear your child lay there and cry and cry. And then when they DO come in to do these things. Sometimes, I have to leave the room. Her veins are so shot from so many sticks and so many hospital stays...there are times it takes 8 or 9 pokes.

Anyway, we waited all morning for them to tell us what time we were going. The one antibiotic that she is on makes her mouth taste terrible, and she just begged for water. Begged and begged and begged. No one should ever have to be put in the place where they HAVE NO CHOICE but to deny their child's basic needs!! At 10:30 the nurse came and told me that we would be going to the OR at 11:30. At just about the same time, Grace had another crazy spell! Her doctor wanted to send her down for a repeat CT at that point, because she was starting to worry about whether the pressure in her head was increasing and causing seizures. However, she was scheduled for surgery at 11:30 and it was 11am. So, Dr. Blatt called Dr. Silberstein and asked him what to do. He said the best thing to do in this case was to go ahead with the externalization. If they got in there, and her shunt was draining well, they knew that the part in her skull was still working. If not, well then they would have to do an external shunt in her forehead also. The PICU team came right at 11:30 to get her. I spoke with the PICC nurse, Cheryl first. She told me that she does NOT even stick a kid if she can't find good access.Then Dr. Sandwell and Dr. Rubinstein came in. Dr.Rubenstein would be the one to administer the sedation. All he planned to use was propophol. He was 100% prepared to intubate her if the need arose, but would not do it "just because". Isn't that interesting? They wouldn't do a sedated CT without intubation, but surgery he would. Hmmm...seems to me someone didn't want to damage her lungs anymore than necessary. I was in the room right up until the point that she fell completely asleep. Cheryl did an ultrasound to look for PICC access and found nothing. She stayed in the room as a backup nurse, but told me right then she would NOT be poking her. I left the room and went to the FREEZING cold playroom to wait.

The procedure was only supposed to take an hour. About 45 minutes into it, I started getting REALLY antsy. Every little movement I saw scared me. At one point, I heard "Stroke team...trauma bay. Stroke team..." I had myself convinced that it was her...even though she was in the PICU not the trauma bay!! After what seemed like forever, I saw Cheryl. She came and told me she had one GREAT, was awake, and had asked for macaroni and cheese!! When I walked in, she had fallen back to sleep.I went over and squeezed her hand and kissed her on the cheek. In true Grace fashion she opened her eyes and said, "Mom did you bring the macaroni and cheese?" When I told her no, she closed her eyes real tight and said, "just call Pastor. He'll bring me some." It was hysterical. They had let her baby jaguar stay with her for the operation, and I think that made her have him in her mind. It was so cute, though. Then Dr. Rubenstein said that since the incision was just above her rib, maybe it hurt her to breathe deeply. Unfortunately, we couldn't test that theory because pain meds have a bad habit of suppressing the respirations also. Last thing we needed. So, we waited the night out, with monitors blaring and no sleep.

IV count- 11

Sunday, June 17, 2012

June 12th and 13th 2012

June 12, 2012- Today, we started trying to feed her a bit more. She had been asking (sometimes literally begging) for food for a couple days, but had to be NPO for procedures. At this point, the vomiting began to get much worse. (Not sure if I even addressed the vomiting, but there ya go- lots of puke). She would eat, be happy as could be, and then with no warning whatsoever, everything for the last 6 months seemed to come up!
Today, her doctor told me that she did think she would have to have some type of surgery at some point. Whether this be abdominal, shunt externalization, a complete shunt revision, or a combination was unknown at that point. However, she felt very strongly that there WAS something going on that antibiotics alone would not be able to treat.

6pm- Grace had a yucky seizure. Eyes literally rolling around in her head and thrashing. Let's put this on the list of things I truly do not enjoy watching.
7pm- Noticed her words are getting more and more drawn out. Starting to wonder if she's post-ictal or if something else is going on???

June 13, 2012
Today started off great!! Grace got up and had a little breakfast and some juice. Then, the SWEET child life girl came an asked if she could go to the other playroom. So, off we went. She painted until the colors bled through to the table!! I caught lots of smiles, chuckles, an even a couple down right giggles. I hadn't seen her this way in over 2 weeks. When we got back to our room, we found a package with gifts. A baby jaguar for Grace, and a crocodile for Josiah. It was from our pastor and the church...the kids just loved them.
3pm- Grace had another episode. Not sure if this was a seizure, or what, but it was scary. She woke up from a sound sleep...screaming, crying, and sweating all over. This lasted for about 15 minutes. I didn't see any of the rhythmic movement that is a tell tale sign of a seizure though, so I think it might have been another terrible dream. She has been having horrible dreams for the past week, I think about all the stuff she's had to have done.

4:30 pm- Dr. Blatt came in and sat down. That's never good news. She told me that all the teams were now on board for her to have the shunt externalized. Tomorrow. She said that the chances that whatever this infection is JUST HAPPENS to be about an 1/8 of an inch away from her shunt tip without infecting the shunt were pretty much nil. While they do it, they will also try to get a PICC line into her, to give them better access for the antibiotics and blood draws. Scared mama....yes, I am. But..."What time I am afraid, I will trust in thee."

IV count- 7. Moving to PICU in the morning.

Strong Memorial, June 2012

Well, here we are...Rochester. Strong. PICU. I have a love/hate relationship with this place. On the one hand, I thank God that it's here for us when we need it. On the other hand, I hate that she needs it! Yet again. So, here's a rundown of what has happened since we got here.

Friday June 8, 2012- After a pediatrician visit, Dr. Leonard wanted us to head up here. Her neurosurgeon was on call, and they were expecting us in the ER. We got here, they got blood, started an IV (she was severely dehydrated, after only 2 days off of IV), and took her for a CT of the shunt. I am not allowed to go into CT with her right now, so I was waiting in the small playroom. Josiah had left his toy in her room, so I went back to find it. I walked in to a Dr. I didn't really recognize, getting a sterile procedure area set up. He told me he was with neurosurgery, that the CT showed her ventricles had enlarged, and as soon as she got back he needed to do a shunt tap. Talk about a blow!! She wasn't even back from CT yet. I signed the paperwork an went over to CT to wait for her. I was having a very hard time believing that she was in shunt failure. Neurologically, she was right on the money. They got her back to the room, and did the shunt tap. Thankfully, it tapped easily. The CSF was clear and completely uncloudy and the pressure was perfect. After breathing a huge sigh of relief on that end, we waited. I knew there was something wrong with her, and I knew it was bad, and I was scared that they were going to just send her home. However, she was badly dehydrated, so they admitted her for that. Up to 4-1600 we went.

Saturday June 9, 2012- I met the Rochester Dr. Leonard for the first time, and knew immediately we would get good care. This man listens. He didn't even touch her belly and she winced. He told me then he was calling in  pediatric general surgery. Her appendix looked fine, but the first thing he noticed was that her pain seemed to be RIGHT where the shunt tip was. Saturdays and Sunday's around here, not as much happens unless it becomes emergent. However, first thing Monday morning, we were going to do a CT of her abdomen with contrast.

Monday, June 11, 2012- CT day. I was told that she would have conscious sedation so that she could get the NG tube and get the contrast. We got down to the CT room, and the anesthesiologist came in. Next thing I knew, we were talking 2 hours of total sedation PLUS intubation. For a CT!!! I became very unpopular right at the moment, but I went ahead and told them I felt like I hadn't gotten the information right and didn't want to do it that way. We went back to her room, where I explained to the doctor that I wasn't comfortable with that much sedation for a CT. So, we did the NG tube with her awake. It was difficult, but she did fine...except it came out an they had to o it again. NO FUN. Thank God we did that CT though, because about an hour later the doctor came in and told me there was a large pocket of infection directly below where her shunt tip ends. Wow. That was scary, BUT it was an answer. Next step was two antibiotics- Flagyll and Cipro.

IV count-3.

Monday, June 11, 2012

June 2012 Hospital Stay...part 1

I'm going to start this post with a synapsis on Grace. As most of you know, she was in the hospital from Saturday night until Wednesday morning. She was sick much longer than that, however. Last Monday, Memorial Day, Grace started acting "off". She had been outside a bit that day, but not too long and not in the direct sunlight. At 2pm, my mom walked the kids the 1/2 block to the end of the road to watch the parade. (I was at work). I got home at 2:15, and went to meet them. Josiah came running to me, but Grace was lagging behind, limping almost as though she were hurt. I found out at that point that she had fallen down the last step on the porch. I attributed her somewhat strange behavior to that for about an hour, but at 3 pm she couldn't keep her eyes open and just wanted to sleep. She couldn't focus on anything. I didn't see a seizure in that time, but one seemed imminent. So, off to the ER we went. Grace has a harder time than most people regulating her temperature, because the hypothalamus is smack in the middle of the portion of her brain most affected by the stroke. We were there for a while, the doctor basically probably thought I was crazy, but if she was going to have one of those big, nasty, heat induced seizures, it wasn't going to be at home if I could help it!! We went home later with a sheet for a contusion, and the doctor said she had possibly had a slight heat stroke. No doubt she had.

Fast forward to Tuesday. She got up, and was happy as could be to go to school. She had a great day at school, with the exception of a few staring spells. However, Tuesday night, she woke up in the night just sobbing that her belly hurt. By Wednesday morning, she had a temp and a small amount of loose stool. I kept her home that day, figuring she had a stomach bug. She acted sick the whole day, but other than a low grade temp, was asymptomatic. We got through the day and night, and I figured Thursday would be better. Wrong. Thursday, my mom called me while at work and said she was now complaining of terrible pain in her belly, directly above where her shunt drains. Off to the pediatrician she went for a check. Sure enough, she was extremely tender in that area and so they sent her in for an xray...which came back ok. Thank God for that. So, we once again figured she had a virus and it was taking a long time to fully hit her. The whole time, a low grade temp continued. Friday and Saturday went by, both days with no energy and fever. However, with some Tylenol, she was better. Saturday afternoon, we even went to a graduation party. She wasn't the life of the party, but she did want to be there. Saturday night, though was a different story. I was a hopeful Mommy, I had our church clothes all ready and laid out. At about midnight, she started crying. I got up and went to her, asking her what was wrong. Her normal response is "it's nothing". This time she said, "It's my body." Then she turned over toward the wall, which puts her directly on her right side. As she turned that way, she started to just cry and scream in agony. Immediately, my mind went to the appendix. I got her in the car and took her to the ER, where they also immediately thought it was her appendix. A CT came back normal for the appendix though, but her bowel was totally full. By 5am,we had been admitted, because her white blood cell count was also high.

That morning, a pediatric surgeon came in and talked to us. He didn't want to go crazy with opening her up, so we started with trying to empty the bowels somewhat naturally, with molasses and whole milk enemas, milk of magnesia, and miralax. At this point, she started throwing up. However, we're not sure if it was because of the nasty stuff in her drinks or her illness. The first enema really had no output, but the second did a pretty good job. By Tuesday, she was considered cleaned out, and we were discussing coming home. Wednesday morning, her repeat labs were cancelled, and we went home. Where she just got worse. She was completely lethargic, refused to eat or drink, totally incontinent, and all she wanted to do was sleep. Not our normal Gracie at all. I let Wednesday and Thursday go by, thinking the enemas and hospital stay really took it out of her and she would perk up by Friday. Friday was her kindergarten graduation. I didn't plan to send her to it, but I did plan on us going so she would still be a part of it. She wanted nothing to do with it. We did go, and she did perk up for about 30 seconds, when her teacher handed her the diploma. All in all, though, she sat there, trying not to cry (sometimes failing miserably) and wanting to go home and go to bed. We left there, and I called her pediatricians office and made a recheck for 1:30 that afternoon. I was due at work at noon, but told them there was a chance I might have to leave. At 2:15 I got the call that they were sending us to Rochester. Her doctor just wasn't comfortable with her continued low grade fevers, pain level, lack of appetite or thirst, and lethargy. So...here we are, still with no real answers. I will update later.

Monday, April 30, 2012

The Battle

I remember right after Grace had the stroke, one of her doctor's looked at me and said "Man up. This is only the beginning of the battle." At the time, his words were meant to be a comfort to a mom who was scared out of her mind. He was saying "there's a fight ahead...but she's a fighter."

Here we are, 2.5 years down the road, and oh Anthony, how right you were. The battle had just begun. The one thing he didn't tell me is that much of the battle would live within me.

What is that battle you ask? It's fear. It's doubt. It's endless possibilities and having no clue half the time whether even half of what we do for is right or not.

It's those long nights when my alarm is set for every 15 minutes, because for one reason or another I am convinced she is going to have a seizure that night. It's the jump off the couch to run and check her if she even moves in her sleep. It's dropping exhausted back onto the couch and then feeling guilt because I didn't check Josiah. So, up I go again, check him, the drop. Sometimes, I convince myself that I hadn't checked Grace in the first place and get up again to check her. Usually, after this, I fall back to sleep. Some nights, I allow my mind to wander and really wonder if I have developed OCD. (There isn't really a problem unless YOU don't recognize the problem, right? RIGHT?)

It's notes home from school saying that Grace kicked the teacher. Could the new medication be having an adverse affect on her? GRACE KICKED THE TEACHER??? It's the immediate reaction of "No, she would NOT do that." It's wondering whether I've changed my sweet girls personality by allowing them to start this new medication...even though we are only trying to help her.

It's the reality that every little illness she gets hits her like a Mack truck.
It's the room full of kids dancing around, that she wants to join. It's the INTENSE desire to grab her and hold her back and tell her she'll get hurt.
It's that feeling in the pit of my stomach when I hear her friend has a normal childhood illness. One she has been vaccinated against!
It's learning how to check the shunt for fill and refill because otherwise we would be at the hospital every 5 minutes.
It's the fact that she is scared out of her mind of hospitals and doctors and that is MY FAULT.
It's springtime fun, which brings with it parks with huge slides, swingsets, and pools.
It's sweet little 7 year old autistic girls, one minute enjoying her day, the next wandering off to the lake.

It's a battle. Every day. Often times, I lose the battle. I let myself get scared.
"But you know that the time to win the battle is long before it comes
   In times of sweet communion is how the victories are won
   Studyin' the Book of Life to learn the Master's plan
   So when the arrows fly on every side
   You'll have the strength you need to stand"



But sometimes...I win. 




 Or, maybe, she does.

Friday, March 23, 2012

Neuro update and dinosaur egg hatchlings...

Grace had a neurology appointment today, as a follow up to her hospital stay two weeks ago. Just as a little update- she has been having small breakthrough seizures that were overpowering the Keppra. We changed her dosage while we were in Rochester two weeks ago, from 750 ml to 850 ml twice a a day. So far, it seems to be working,and so we will continue on this. We also are going to start looking at something to help with her attention span. In general, I'm not big on those kinds of meds... brain injuries don't play fair though, so we might need to help her a bit.

And in other news...Grace has developed QUITE the imagination as of late. Last week, we were at WalMart and both the kids behaved EXCELLENT the entire time. So, at the end of the trip, I saw a bin with those big balls in them. You know, like the HUGE playground balls? We have tons of balls, but these are perfect for this spring weather that we're enjoying. Plus, they bounce off heads without causing damage, LOL. So, I told both kids they could choose a ball. Like a very normal boy, Josiah bounced his up and down and jabberjawed the whole way home about playing out back with it. Grace, on the other hand, carefully carried hers to the car, promptly put a blanket over it, and has slept with it in her bed every night since. She declared it " a baby dinosaur egg getting ready to hatch." Guess what we carried through Strong Memorial Hospital today at her appointment? Of course, Dr. Hughes asked Grace about it, and she got a VERY long, very spirited answer about where the egg came from, why it's round and not egg shaped, why it's purple, where the baby dinosaur egg gets it's air from, and how she's going to be a baby dinosaur mommy. Dr. Hughes listened intently, jotting down notes as she went. I asked her what she was writing, and she told me how AMAZING it is that Grace has any imagination at all, much less that great of one! She said many, if not most, pediatric traumatic brain injury patients never learn to think outside the box at all. They become very analytical. I loved her words- "I'm impressed, but I really shouldn't be. Grace likes to raise the bar."

Tonight, in celebration of a good appointment, a well behaved trip...and just because- our dinosaur eggs will hatch. (No, I'm not going to deflate the balls), Waiting atop the egg for her is a cute green stuffed dinosaur. And for Josiah a wheelbarrow for outside. Not that those hatch, but he's more outdoorsy.

Monday, January 2, 2012

Starting 2012 off right...

Gracie got a big orange crayon bank for her birthday back in September. For a few days, it just sat there. Actually, for a few days, it was used as a weapon. Josiah seemed to think it made a perfect launching item. He had no worries over where or who it hit though! I decided to bring said bank upstairs to their room. Now that I'm working, I try hard to have a few special times with them every day. As small as it is, this is one of them. Every few nights, I empty my wallet and purse and pockets and let the kids put it into that bank. They love the sound of the money clunking at the bottom, and they count as they go.

Back in November, 2 men from our church were going on a missions trip to Thailand and Burma. To be honest, I never know how much Grace listens during church. I knew then though. We came home the night that they talked about the trip, and she told me we needed to give them "yots and yots of money. For the Burma kids." At first, I just let that go, but she continued. She'd ask me about Burma, if they left for Burma, where Burma is. So, I put the money I had planned to give for the trip in the envelope and gave it to her to put into the offering plate. She was faithful in praying for that trip every single day that they were gone. No, she didn't say "Let's pray for Bro. Bob and Bro. Matt." She did, however, ask me every day if they were still there, if they'd gone to see the orphans yet, all kinds of questions. Her heart was captured.

Two nights ago, I realized how much. As we were putting our money in the crayon, she said, "Let's give this and your whole paycheck to the canaries." I didn't even know what she was talking about. Sometimes, she just goes off on tangents about stuff she sees on Disney- I figured she saw something about canaries. Then later, I was praying for a family that is going on a missions trip this month...to the Canary Islands. So I went and asked her what the canaries were. "You know, the canaries, Mama. At church." Suddenly, it hit me. When we talk about Burma, it was the Burmese. Thailand- Thai's. She was talking about the people who live in the Canary Islands! So, we started talking about it more. I couldn't BELIEVE how much she knew about this trip! I was so excited, because it means, somewhere at some point, she listens in church! I asked her if she really wanted to give her savings away. I wanted to be sure she understood that it would be gone for good. She said yes. Emphatically.

So, yesterday afternoon, I went and got the crayon. I planned to take the money out of it and put it into an offering envelope. When she saw it, she got so excited, clapping her hands and laughing. She asked if she could give it to them herself. I told her we would put it in the plate when it went around with their name on it. SHE WAS NOT HAPPY. She wanted to make sure that he got it, and she wanted to give it to him. HERSELF. So, before church last night, I let her go and give it to him. In true Grace fashion, she asked him to give her the crayon back. She was so incredibly happy...and she taught me a great lesson. Life is about giving. Yes, we have needs...but ours are so often met above and beyond, and then we start going after our wants. Without a thought of those with NEED. Food, shelter, clothing...SALVATION...a Bible to read.

We got the crayon back before we left church. Grace saw it sitting on the dresser this morning, and said "Mama, it's empty!!" I thought, "Oh no, did she forget already?" Then she said "You better go to work so we can fill it up again! The Canaries really need it!!" Lord, please let them both always have a heart for You and a heart for others....
 
"Give, and it shall be given unto you; good measure, pressed down, and shaken 
together, and running over, shall men give into your bosom. For with the same 
measure that ye mete withal it shall be measured to you again."

Saturday, December 31, 2011

Lessons learned in 2011...

This year I learned....
That no matter how hard I try to convince Him otherwise, God is always right.

I learned...
Two wrongs never make it right...they just make a mess.

I learned...
I have the tendency to be a "bad weather Christian." I sure do run to God with my tail between my legs when something goes wrong! I'm quite sure that he feels awfully abandoned by me on the good days, though.

I learned...
That the real struggle actually begins when you finally get to the end of yourself.

In 2012- my goal is simply this. Keep it simple. Get back to just living, laughing, and loving. My verse for the year is " Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O LORD, my strength, and my redeemer." I see a true need for me to rein in my thought life, so that I can rein my tongue, which will therefore affect my actions.

Friday, December 9, 2011

A testimony I'd like to share...

This young man took the prayers of my heart for you, Grace, and he put them into words. In case this link disappears, I want you to know the words he said- and live by them.

"I often say, that medically speaking, I shouldn't be able to talk. But because I can, I assume that there is something that God wants me to say. And medically speaking, I shouldn't be able to walk. But because I can, I assume that there's somewhere that God wants me to go. And despite the physical adversity that God has brought into my life....despite the pain that at times I have felt has been too much to penetrate, I have found that crying out to God, OVER and OVER again is the ANSWER to that adversity."
Dave McCroskey.

What an amazing young man!! We will be adding him to our prayers.
http://www.youtube.com/watch?v=Vd7lfwS97D0&feature=youtu.be

Wednesday, December 7, 2011

Aunt Fret

Tonight, we went to the nursing home to see my Aunt Fret. Gracie was all excited, we had visited her before, and she sat in the hallway with us and talked. Well, now Fret is getting ready to meet Jesus. She lays in a bed, very close to the floor, with oxygen on. We walked in, and Gracie immediately walked back out. She told me she was scared. we walked around for a few minutes, and I tried to explain the machines to her. SHE KNEW WHAT IT WAS. She looked at me and said " I know that's a breathing machine, Momma. I don't like it in there." Like the sweet girl she is, she did go in with us. She sat right by Aunt Fret and told her she loved her. She listened as I read to her from the Bible. When we left, she was a bit sad and subdued.


Later, she told her Grandpa that she had gone to see her Aunt Fret. She told him that " she doesn't get up and go sit in the big room anymore. She has a nice bed though and a machine to breathe. They keep it right next to her and she has a duck and a TV. Her hair is soft and she'll be happy with Jesus."

Wednesday, November 16, 2011

2 years ago today...

We were standing in front of a CT room as the words you never want to hear were being yelled. "Code blue, bag her stat!!" I was standing in a hallway, watching as Vicky jumped on top of my 3 year old daughter and began administering CPR until the equipment small enough was brought to her. 2 years ago, we sat in the PICU as a nurse rushed past us with a DRILL and we listened as a doctor we had never even met drilled a burr hole into the front of her head. 2 years ago, I sat in a wheelchair in the middle of the PICU, basically rendered speechless and unable to cope, as my Pastor took over and took care of every detail for us. 2 years ago, we rushed into the doors of Strong Memorial Hospital and up the PICU- no clue what we were going to find when we got there. 2 years ago, we were told that our sweet girl would be "a vegetable", "a shell of what she once was" and "not the same Grace we know now." Two years ago today, God began to use our sweet girl to show us just how powerful, loving, and merciful He is.
In two years time, we have had so many triumphs!!!
From this:
to this:
We have had setbacks....

blindness, seizures, and multiple illnesses to name a few!!

And we have had an amazing amount of fun!!





In two years time, we have learned that grace of God truly is sufficient. In the good times, the bad times, and the times we didn't think we'd make it through another minute, He has pulled us up and held us in His hand. He has used so many of you that read this blog to make us laugh, dry our tears, (or let me soak your shoulder), and just keep us fighting the fight. So, thank you....for reading, praying, and loving us! We love you!!

"And he said unto me, My grace is sufficient for thee: for my strength is
made perfect in weakness. Most gladly therefore will I rather
glory in my infirmities, that the power of Christ may rest upon me.
Therefore I take pleasure in infirmities, in reproaches,
in necessities, in persecutions, in distresses for Christ's sake:
for when I am weak, then am I strong."

Tuesday, November 15, 2011

Prayers...

To my babies:
I sat there last night, beside both of your beds, and prayed. Gracie, I prayed that you would always be as stubborn, loving, and tender-hearted as you are now. I prayed that as your brain heals, which it does every day, you would never lose sight of how far God has brought you. I prayed that as a family, we would never forget. We might move on, one day I might stop explaining to people that you have a TBI--- but please, Lord- let us never forget. I prayed that the circumstances of your early life would cause you to desire to help others. Josiah, I prayed that you would always love me as much as you do right now, no matter what mistakes I make. It's the love of my babies that gets me through some of life's toughest days.You are such a smart boy. I prayed for you to grow and mature into a wise young man- one who gets his wisdom from God, not the world. I prayed that, just like your daddy, you would always wear that cowboy hat and boots. Be your own man!!

For both of you- I prayed for your friends- the ones you have now, and all that you will soon meet. Lord, please help them to make right decisions in their lives. I prayed that you would always be a good influence on those you meet. I prayed for your service. That you would serve God...but not because Mommy and Daddy force you to, but out of love and desire. I even prayed for your future husband and wife!! I had to giggle a bit as I thought of either of you married! Gracie, please don't hit your husband if he steals your last yummy yummy. And Josiah, please learn that chocolate is very important to a woman!!

I love you both. Some day in the future, you'll have a bad day. Believe me, you'll have days that you feel like can't possible get any worse. I pray that they are few and far between, but that when they do come, you learn. When you get there, and you're at your wits end, I hope you'll read this, and feel a bit better. No matter what, your mommy will pray for you.


                                                    1 Samuel 1:27  " For this child I prayed..."

Saturday, November 5, 2011

Month of Thanksgiving...

I've noticed a lot of my Facebook friends have been doing posts about what they're thankful for every day. I had decided at the end of last month to do something a bit different this year, seeing as I seem to always be thankful for the same things. Which I still am, but there's only so many ways to say it. So this year, I've been asking Gracie and Josiah what they are thankful for and writing it down every night. They are 5 and 2.5. Some of the answers have been hilarious, some have been pretty selfish, some have been rather...eye opening. So, here we go. Our first week.

This is how the conversation went on Monday.
"Me- Mommy is going to ask you what you're thankful for every night. That means something that you really like or something that made you very happy. Ok?"
"Gracie- Daddy bought me a new Minnie Mouse blanket."
"Me- And you're thankful for that?"
Gracie- "Yep. My dog likes to sleep on it."

So, like I said sometimes, it's quite funny. And Josiah usually has the same one word answer. Mommy. Which is cute and sweet and adorable. Anyway, without further ado.
Monday- Gracie was thankful for her Minnie Mouse blanket. Josiah said "mine mommy"..
Tuesday- Gracie was thankful that her grandma was coming home from Florida. Josiah said his cup and his bed.
Wednesday- Gracie was thankful for her dog and that her Grandma and Uncle Timmy were there. Josiah was thankful that I read him books.
Thursday- Gracie said she was thankful that she got to go to the library at school and that I read the book to her at night. And that she had a coat and gloves and that I put yummy yummies in her coat pocket sometimes. And that I get to come home at night (which made me cry). She was very sweet and thankful that night. Josiah said his usual Mommy that night, but with much coaxing he said his hat.
Friday- Here's the eye opening one. Gracie said she was thankful that I fill up her lunchbox for her every morning. She said "I get hungry at school, and then they give me my lunchbox and my mommy always fills it up." Josiah said Mamma. That's his word for Grandma.

What am I thankful for? That my two beautiful children have so much to be thankful for. That my beautiful daughter has the capacity to tell me what she's thankful for. That my son loves me so much. You know....just the normal stuff.

Friday, October 21, 2011

Sunday, October 16, 2011

The good stuff.

Life is all about balance, it seems. Finding that perfect balance of good and bad, happy and sad, love and hate...it's what we humans strive for. We crave it. And, at the end of the day, I think we all hope and pray that the scale tips a tiny bit to the good side. Last week was hard for me. Although I did my absolute best to put that new diagnosis out of my head and just move forward, I'm still human. In the dark of the night, words haunt you. For the past few days, those words have haunted me.

Today, I took a step back and really thought it through. The words "brain bleed" haunted me. The words "cerebral palsy" haunted me. The word "stroke" still haunts me. "Shunt failure" will ALWAYS haunt me. Still...they are only words. I need to achieve a balance!!

So, tonight was the first time PeeWee's sang for the year. To be 100% honest, I dread the performances. I can remember when Gracie was really little, watching the kids up there singing. I would smile and giggle and daydream about when she was old enough to sing with them. My daydreams didn't include me having to stand next to her and tell her to stand up, stay still, don't jump, etc. That's what I do though, and I do it gladly. It was our choice to have her be in the club. It would have been much easier to just have her sit it out until she could stay still and pay attention. She has an 80% injured brain though, so whether she'll ever really be able to sit still is kind of up in the air!! We wanted her to be with the other kids her age and be a part of the activities of the church. She gets so much out of it, too!!

Last year, she stood up there with the other PeeWee's every performance, and never uttered a word from the songs. It looked like tonight would be the same. The kids got through the first two verses of the song and she never even tried to sing (though she knows every line). Then the third verse started and she got excited and jumped up and down and said, rather loudly- "This is my favorite song!!" Then it happened. She sang. "He invites me to His bakery table. His banner over me is love." Yes she said bakery. It's ok, I'll take it.

I almost made it, but I didn't. I had tears streaming before we got off the platform, and had to go to the ladies room to just sob for a few minutes. You know those wonderful, POWERFUL, cleansing, HAPPY tears? Some more words that haunted me?? "She may never talk again." Well, tonight....she sang.

Balance. Tonight, it's tipping toward the good stuff.

Tuesday, October 11, 2011

The hard stuff

Sometimes life is just plain hard. Today was one of those days. I was trucking along at work, loving my job, but still counting down til I got to get home to my family. As I do everyday. My phone rang and I saw the 585 area code. I recognized the number as Gracie's neurologist, and knew immediately that she was calling about the testing that Grace had done at the beginning of this year. She is honestly one of my favorite people, so I look forward to our monthly phone conversations. She also agrees wholeheartedly with me about trying every non medicine intervention before going to medicine, so it makes it easier to get along with her.

We chitchatted for a few minutes, as always. She wanted to know all about kindergarten and Sunday School. She asked how John and Josiah were. She asked me what color my hair is--- I had mentioned I was coloring my hair the last time we spoke, and she remembered. See why I like her? Then she took a deep breath and I knew it was coming. THE HARD STUFF.

Grace had an IQ test back in the summer. The results were used to help get her into her class at school, so I knew they weren't great. Dr. Hughes said that for a child with Gracie's history and extent of brain damage, they would EXPECT a score of between 10 and 15. Grace scored in the low 70's. Isn't that amazing? It's awesome!! However, average is around 100. SOOO...I had to hear a word that I hate. I had a whole post about it not so long ago. "Grace is considered functionally mentally retarded." I wanted to scream. I wanted to tell her how crazy she was, that those test scores mean nothing. I wanted to tell her that my daughter can hold her own in a conversation with adults, she has a huge vocabulary, and she can remember the words to songs after hearing them once. I wanted to cry...and I did. I walked outside and around the corner, sat down in the grass, and I cried. Then I regained my composure, went back inside and thought about what she had said.

"She should be on the other end of the scale."
"There is no logical or medical reason why Grace functions so well with so little working brain."
"She's doing awesome. Her score went up 23 points in a year."

That word that I hate? It's just a word. It doesn't mean anything. Just like when autism got thrown at us, I have to realize that these diagnoses are just terms used to describe what we already know. What we do with them is what matters. I could throw in the towel and give in it. Or I can look at the bright side...She's smart as can be, but it's almost impossible to test her. She's way above and beyond whats to be expected of her!! She's gained over 20 points in one year!!

So that's where we are today...same girly as always. Mommy is just struggling with the hard stuff.

Sunday, August 28, 2011

Moments in time...

Gracie's 5th birthday is VERY quickly approaching! Last night we were sitting in her room, chitchatting with the lights off. I asked her what kind of cake she wanted for her birthday party and who she would like to invite. She said she wanted a big cookie, "like the one you made for Chad, my mommy." Which I found especially funny, because she only heard about that cookie, it got eaten before the kids got a piece. She wants me to decorate it like Mickey Mouse...guess I should have taken the cake decorating class at church last month!!

Anyway, then I asked who would like to invite. She said only one name, a child from her class at school. He has hydrocephalus like Gracie, but he doesn't talk and uses a wheelchair. He's also one of our absolute favorite little people in the world. I told her that we would definitely invite him, and she clapped her hands and did her special Gracie laugh. Then she got really quiet and said " He doesn't get to play with all of the other kids. Like I didn't used to. But he's my best friend because I love him. Except for brudder." (Then she pushed Josiah off the bed, but we'll pretend it was a completely sweet moment!!!)

It's moments like those that make my heart swell with love. Love for my baby girl, and love for my Jesus. Whom I have not given as much praise and glory and attention as I should lately. HE and HE alone took such a devastating experience as a childhood stroke and is turning it into something good. He's opening a 4 year old heart up to see the world and people the way they really should be seen. To treat people the same, no matter what. To have compassion....

Wednesday, August 17, 2011

The "special" teacher

Gracie graduated from Pre- K today. Wow, what an amazing accomplishment from the little girl who wasn't supposed to even leave the hospital in 2009. I was sitting here tonight, thinking of all that she has done and learned this year, and it brought tears to my eyes.

A year ago, Grace had her final PT/OT session with the girl who came to our house. Gracie absolutely loved her. She loved their play time. I remember one day they were trying to learn to use scissors, and Grace scared the living daylights out of everyone. Yesterday, her occupational therapist told me that scissors were pretty much "mastered." Mastery of a skill....alot of parents probably don't even notice things like using scissors. To us, it's huge. So, to all of the occupational therapists out there...thank you.

Last September, we went to parent teacher night at her school. Part of that included "open gym"- which meant that the physical therapy rooms were open. Grace fell about 500 times that night, and could not even keep herself upright on the therapy ball. Today, she bounces across the room on it like Tigger. So, to all of the physical therapists out there...thank you.

At the beginning of the school year, Grace still aspirated pretty regularly. She asked everyone, "What's your name?" Her h's were p's. Her name was Dace. Today, she very rarely ever chokes, much less aspirates. Our cat now hisses at her...and that sure does sound better than what she used to say. Her name is not only Grace, but it's G-R-A-C-E. Spelled out. So, to all of the speech therapists out there...thank you.

A year ago, Grace could not sit still for a minute. She couldn't remember anything past Twinkle, twinkle little star. She had a hard time fitting in with other kids, because she didn't understand like they did. She wouldn't sit still even for half of a story. She didn't know her ABC's, colors, numbers, animals, etc. Today, she knows and does all of these things.

A special education teacher is a very SPECIAL teacher indeed. Every day, that person CHOOSES to go to a classroom with kids that are "different". Some of them hit. Bite. Some are non verbal and that teacher can never be quite sure what they are getting...or not getting. Almost all of them have the energy of 24 "normal" kids. That teacher loves those kids though, loves that job, that CALLING- and does it day in and day out. And the kids learn. They are like sponges, and before long, parents like us are amazed at the things their children know. AND so, to all of the special education teachers out there...thank you. What you do is important. What you do matters, forever. What you do changes lives.

Happy pre-K graduation, girly-bug. We are so very proud of you!!

Monday, July 25, 2011

Neurology appointments, ASD, and kindergarten bus assignments....

This past week was busy!!! On Tuesday morning, Gracie woke up with a fever of 104.9. Of course, this also happened on the HOTTEST day of the year. Temperatures rose to 101 with a heat index of 108 (from what I heard). I am a self proclaimed sun worshipper. I love the heat. It's funny how things like seizure disorders can change a persons outlook on something. I still love the sun, but on those hot, hot, HOT days, we pretty much stay inside now. Back to the fever though....any temperature over 101 warrants a pediatrician visit with Grace. So, we went to see her doctor and came straight back. Her throat was bright red, but the rapid strep came out negative. Dr. Roessler was quite sure she had an enterovirus--- the only thing that worried him was the increased chance of seizure activity. We went home and Grace had her tylenol and fell asleep on the couch. Her fever came down a bit too quickly, because she seized in her sleep. It is so scary to watch a child seize. This time, we were able to wake her up within about a minute and she pulled herself out of it. She was very post-ictal for a about an hour or two, and then she started to perk up. A call to her neurologist left us needing to go to Wegmans to pick up an emergency drug for the duration of the illness. It's called Klonopin, and it's one drug that I hate the very idea of giving to her. There are tons of side effects from it...and it just doesn't sit right with me that people pay $5 a pill for the stuff. HOWEVER, sometimes the good has to outweigh the bad, and it did control those seizures. She had another seizure at Wegmans, but again, she pulled herself out of it without any rescue drugs. Thank God.

We already had a neurology check up scheduled for Friday, so we kept that appointment. While we were there, we discussed these seizures- but also other behaviors that we see. Her neurologist said that Grace is hyper focused on some areas- to the point that distracting her is not just hard, but might be literally impossible. There are things that just bother her so much that her brain gets stuck on them and just does a loopdeloop, right back to it. It's hard to explain in words. For example, she recently saw a cartoon with a child that had to go to the hospital. She will ask about that show at all hours of the day, almost as though she is just fixated on it. Some behaviors that the doctor saw herself and others that we described caused her to officially place Grace on the Autism spectrum. It's quite typical for kids with TBI's to show these symptoms, and while it puts her on the charts, it does not mean she is "autistic". These are behaviors that can get better or worse over time, and we just have to watch and wait! What does all this mean to us? Pretty much nothing, LOL. She's the same Grace we walked into that appointment with!!

That afternoon when we got home, I got the mail and in it I found this-



Oh boy, did the tears ever flow!!!

Saturday, July 2, 2011

Kindergarten

I'm very happy to report that Gracie has been accepted into the special needs 12:1:1 kindergarten class!! This has been a HUGE concern and now a HUGE burden off of my shoulders. As I have previously blogged, I had always planned to homeschool. After the stroke, I knew I would end up having to send her to school for therapy. It broke my heart, absolutely broke it.. Then she not only showed tons of progress, but she just blossomed!! My girl adores school. As a matter of fact, short of a week break this week, she will attend ALL summer long!!

I started to get nervous about kindergarten back in February/March. The district we were living in has very minimal special needs programs. Although Gracie has done above and beyond what any doctor or teacher ever expected, she does still need special help and a careful eye. She still falls a lot, and she still loves to take off and just run when she gets bored. ADHD at it's bests? Nope just a stinking traumatic brain injury. We recently moved back into the district I went to school in ( all those years ago in the Ice Age, LOL)-- and luckily it is bigger and has more funding. We moved late though, and so the CPSE ( Chair person for Special Education) wasn't sure of she'd be able to get Gracie in to the 12:1:1. Which is what she needs--- the special attention on a small class, with an emphasis on continuing to get all of her therapy and learning to play well with others. Gracie still plays by herself more than with other kids. Recently, she has begun to sit near other kids while she plays, and that's a huge step in the right direction. She gravitates to younger children and babies though, or she just sits all by herself to play with something. No interaction with the other kids near her.

Anyway, I got a phone call this week to tell me she was accepted. I'm so excited for her to get the type of education that she needs....also a little sad to see her go off for 7 hours a day....

Thursday, May 12, 2011

Sticks and stones...

I can not stand what PEOPLE have done with the English language. I can NOT stand the way words are taken, given a new meaning or a negative connotation and then used to hurt others. I simply can not stand it.
You know that old saying, we all know it, we have all said it at some point, I'm sure!! " Sticks and stones may break my bones, but words can never hurt me!" Usually said in a sing song voice, often by a child who then leaves the room to cry. What does God say about our words?
Proverbs 18:21 " Death and life are in the power of the tongue:"
Luke 6:45- " A good man out of the good treasure of his heart bringeth forth that which is good; and an evil man out of the evil treasure of his heart bringeth forth that which is evil: for of the abundance of the heart his mouth speaketh."

Our words do hurt people, even those who seemingly don't understand. Three weeks ago, Gracie was called a retard. She didn't even hear it, and even if she had, she doesn't know what the word means. I know though. I knew what that child was implying about my little girl. It's in these times that as a parent, we have to just take it in and make it our secret hurt. My flesh wanted to take that child aside and give a little lesson on what the word means. My flesh wanted to find the child's parents and ask them why in the world their child is saying such hateful words!! Thankfully, this was one time that I could not let that flesh win, so I just took it. I realized last night though, that those words were sitting right on top of my heart. I didn't take Gracie back to the class that it happened in for three weeks. That's how the words hurt her. Though she had no idea what was said, she missed out on one of her favorite times of the week three times. In reality, that's MY failure, I know. I'm not mad at that child or the child's parents...just myself and the devil. Me for letting him get to me. And him, just because I hate him!!!
Recently, I posted this on Facebook- "If I could stand in front of an assembly of the entire world, I would ask for just one thing. Be kind. It's not that hard. It doesn't cost anything. We have no idea where that other person's life journey has taken them today. Or where they will go tomorrow. Just be nice. And when you're not, own up to it." I believe that. I attempt to live my life this way. We have no idea how a simple smile might change a person's day. We have no idea when the rashness of our tongue will impact one forever.  

My Gracie is a 4 year old little girl, CHOSEN by God to have the trial of this stroke, for HIS glory.

She can't sit still- but she CAN sit- To God be the glory!!
She can't hop on two feet like other kids, but she can do it one leg at a time- To God be the glory!!
She has to ask the same question over and over before she finally gets it, but she can speak-To God be the glory!!

Oh and by the way, the word retard is a verb...
 Did the stroke retard Gracie's development? Yes, of course it did!! Is SHE a "retard"? No. Simply put, she's a miracle.

 
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