There are moments in everyone's life that are never forgotten. August 28, 1996 is the very first moment of my life that I have never been able to forget. I was 16 years old, and it was exactly one week before the first day of my senior year of high school. That morning, I was having a very simple day surgery, to have an ovarian cyst removed. The doctor had assured me that it would be a simple procedure, that I would just have to rest for a few days. I would be able to start my last year of school just like everyone else. Even today, I close my eyes, and I am back on that stretcher, being wheeled away from my mom and dad and into the OR. The anesthesiologist is standing above me, telling me to count backward from 100. 100, 99, 98...and the next thing I remember I'm in a different room, with voices everywhere. I can hear my mom asking when I would wake up. I remember wanting to tell her that I WAS awake, but I couldn't seem to form the words. The next words I heard have been etched in my mind for the past 14 years. "The surgery went fine and we got the whole cyst. It was quite a large one. She should recover nicely...however, there is a lot of scar tissue on her ovaries and her uterus is tipped. Babies are not in her future." At 16 years old, I knew the finality of those words. My life's dream was always to be a mommy. Throughout the next 10 years, I had more problems, and many more procedures. Every time, the doctor would always make sure to tell me that my chances of ever bearing children were slim. A hysterectomy was discussed when I was 21 years old. The doctor said that I might as well get it over with then and stop having all of the health problems. His words? "You are never having kids anyway, Michelle. Get over that and get healthy."
The echo of those words haunted me for years. Well before I was ready to have children, I knew I never would. Well before I ever fell in love, I knew that when I did, I would have to break the news that I could not bear children. Then, I met the man who became my husband, and got pregnant RIGHT after we were married!! What a beautiful surprise it was to us. Not even a month later, that baby went on to Heaven. I can still hear the ultrasound technician's voice as she said "I'm really sorry, it looks like a blighted ovum." At that moment, every dream we had seemed to come crashing down around us. I just knew that all of those doctors had been correct over the years. That this pregnancy was just a fluke, and that my body didn't sustain it because it couldn't. I felt bad for myself. I was angry. I was angry at pregnant women, angry at God, angry at myself.
Then, just when I was at one of my lowest times in my Christian life, God gave us another beautiful surprise. It was just about 5 weeks after the miscarriage, and I was feeling lousy. I hadn't read my Bible or prayed for weeks. I was about as far away from God as I possibly could be, my heart was closed off. I thought He had turned His back on me, just when I needed Him most. John had a Friday off from work, and he told me we were just going to go out and have fun. We packed a picnic lunch and headed to a park that we like, about 15 miles away. We sat there on the swings and ate and talked. It was the first time that I let myself open up about how badly I was hurting over the miscarriage. After about three hours, we left the park to go out for ice cream. While we were sitting in the restaurant, I started to feel awful pains in my stomach. By the time we got home an hour later, the pain was absolutely unbearable. Figuring it was a kidney stone, John took me to the ER. After sitting there for what seemed like an eternity, the nurse came in and said she had to send me to ultrasound. We asked why, and she said that I did have a kidney stone, but that I also had a positive pregnancy test! The doctor was actually more concerned about the positive test than anything else, because it had been such a short time since the miscarriage. He was concerned about choriocarcinoma, a type of cancer that only happens during pregnancy. So we went off to ultrasound, hoping to see just a speck. And there it was...a beautiful, tiny yolk sac. A sign of life. I went home that night, with a real smile on my face for the first time in 5 weeks. John and I stayed up late in the night, excited for the pregnancy, but nervous as well. Would I sustain this pregnancy? Would the same thing happen again? We laughed and cried and prayed together. John opened the Bible to read. He was doing a study in Psalms and was on Psalm 82, but he opened to 113. I watched him scan the page and his eyes light up. I opened my Bible to the same Psalm and tried to figure out what he was seeing. Within moments, I knew. Psalm 113:9 says: " He maketh the barren woman to keep house, and to be a joyful mother of children. Praise ye the LORD." At that moment I knew how wrong I had been. God had never left me. He had been there with me, through my moments of anger, hopelessness, and despair. He had loved me when I had cried in anguish and he had loved me when I cursed His very name. At that moment I knew that we would be just fine. God gave me this verse to remind me of His power and love. No matter how the pregnancy turned out, He had already kept His promise. I would be a mother. I already was.
Friday, April 23, 2010
Wednesday, April 21, 2010
Are you going to sue???
There are two questions that I get asked more often than anything else. It's funny, people will ask me about Grace, how she's doing, what caused the stroke,etc. Then they'll cut me off right in the middle and say "I hope you're suing that hospital!". I don't usually even answer the question, but I figure I will answer it here. It IS expensive to care for a brain injured child, I will not even begin to deny that. We have to travel back and forth 2.5 hours at least once a month for appointments. Grace can't handle a whole day in the car, so we usually spend the night, depending on the length of the appointment. Grace can't control her neck muscles as well as she used to, so we had to invest in an expensive car seat for those trips. Day to day expenses add up as well. She was fully potty trained before the stroke, and is now regaining her muscle control. We've been buying Pull-Up's for the past 5 months now though. At $15 a pop, yeah that gets expensive. She goes through shoes like most people go through toilet paper. Originally, because she was crawling everywhere, and now because the braces wear them out well before their time. There are many other expenses, as well.
However, that being said, the answer is a big, fat NO. We will NOT be suing the hospital. I will be honest, the thought was entertained. We even contacted a lawyer who told us we had a solid case. This was all while Grace was still in the early stages of rehabilitation, and we didn't know the outcome. We STILL don't know the final outcome, but we know suing isn't the answer. Why? First of all, what would be gained? Money. We TRY to live our lives based upon Biblical principles, and that right there is enough to make us realize that it would be WRONG. "For the love of money is the root of all evil: which while some coveted after, they have erred from the faith, and pierced themselves through with many sorrows." I am not saying that anyone who has sued a hospital is wrong, but we know it would be wrong for us. Did the hospital do wrong? Yes. The nurse that was working that night definitely did not do all that she could have for Grace. She did not listen when we said there was something more going on. Is MONEY going to help that? No. All it would do is ruin a woman's life, and I am certain that she has thought long and hard about that night. I am CERTAIN that she has had the same nightmares that I still do, hearing Grace scream. I am ALSO CERTAIN that she would go back in an instant and listen to me. I am also CERTAIN that she truly thought that Grace had the flu, and that she was helping her by keeping her from the radiation of the CT scan. I am CERTAIN. Nurses are people, and they are the people that have done so much for me and my family that I could never repay it. Sometimes they are wrong...and at the end of the day, they live with mistakes they have made. I wish they didn't. They are JUST people.
If you have read this blog, you have gotten to watch and be a part of MIRACLES, as God worked them. To us, suing the hospital would be a SLAP IN THE FACE to our Wonderful Savior. "Well, God we begged for You to heal her, and You did. We begged for You to allow her to walk again, and You did. We asked that she could see again, and she does. But God, now we want money for our pain and suffering." PLEASE. "Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content." "But my God shall supply all your need according to his riches in glory by Christ Jesus." We will not look God in the eye and tell Him that what He did for us wasn't enough. We will NOT.
As for the second question that I am often asked...will I write a book? A more positive answer for this one. Yes, I am starting to work on a manuscript for a book. It might take 20 years to complete though!!!
***Sorry if I seem preachy or whatever...we are just very adamant about this decision and why we have come to it.***
However, that being said, the answer is a big, fat NO. We will NOT be suing the hospital. I will be honest, the thought was entertained. We even contacted a lawyer who told us we had a solid case. This was all while Grace was still in the early stages of rehabilitation, and we didn't know the outcome. We STILL don't know the final outcome, but we know suing isn't the answer. Why? First of all, what would be gained? Money. We TRY to live our lives based upon Biblical principles, and that right there is enough to make us realize that it would be WRONG. "For the love of money is the root of all evil: which while some coveted after, they have erred from the faith, and pierced themselves through with many sorrows." I am not saying that anyone who has sued a hospital is wrong, but we know it would be wrong for us. Did the hospital do wrong? Yes. The nurse that was working that night definitely did not do all that she could have for Grace. She did not listen when we said there was something more going on. Is MONEY going to help that? No. All it would do is ruin a woman's life, and I am certain that she has thought long and hard about that night. I am CERTAIN that she has had the same nightmares that I still do, hearing Grace scream. I am ALSO CERTAIN that she would go back in an instant and listen to me. I am also CERTAIN that she truly thought that Grace had the flu, and that she was helping her by keeping her from the radiation of the CT scan. I am CERTAIN. Nurses are people, and they are the people that have done so much for me and my family that I could never repay it. Sometimes they are wrong...and at the end of the day, they live with mistakes they have made. I wish they didn't. They are JUST people.
If you have read this blog, you have gotten to watch and be a part of MIRACLES, as God worked them. To us, suing the hospital would be a SLAP IN THE FACE to our Wonderful Savior. "Well, God we begged for You to heal her, and You did. We begged for You to allow her to walk again, and You did. We asked that she could see again, and she does. But God, now we want money for our pain and suffering." PLEASE. "Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content." "But my God shall supply all your need according to his riches in glory by Christ Jesus." We will not look God in the eye and tell Him that what He did for us wasn't enough. We will NOT.
As for the second question that I am often asked...will I write a book? A more positive answer for this one. Yes, I am starting to work on a manuscript for a book. It might take 20 years to complete though!!!
***Sorry if I seem preachy or whatever...we are just very adamant about this decision and why we have come to it.***
Sunday, April 18, 2010
One of these kids is not like the others...
There are moments in every single day when I look at my beautiful little girl and realize just how different she is from 6 months ago. EVERY DAY. Yesterday, we went to a birthday party for one of her little friends, and it was chock full of those moments. She had a ton of fun, but it was very stressful for Mommy, lol!
We got there and there were a lot of people there. All people that she knows, but she usually sees them at church. She was SO excited to go to Olivia's party, she almost fell out of her car seat trying to get out of the car. After about 10 minutes though, I noticed her, standing by herself off to the side. She's not a loner...she was just hanging back and watching the action. I tried to engage her with the other kids, but realized really quickly that she thought she was playing with them. Just standing there, watching them play was enough for my girly-bug. The next thing I noticed was her table manners, or lack thereof. Now, it would be unfair for me to say that this is completely a stroke thing. Grace has always had a problem with grabbing before she asks. However, we were working through that before November and she was actually doing very well. I saw her put her hands on so many people's hot dogs I wanted to just cry. Thank God most of the kids didn't notice, and the older one was gracious ( love you Alura!). She also pretty much refuses to use utensils these days. I've been racking my brain, trying to figure out why. I watched her at the party yesterday, trying to stab a hot dog with a fork. She missed every time, then she finally got it and the plate fell on the floor. She's just learning to adapt, just like the rest of us are. So, I let her eat her cake with her hands. One of the older kids asked me why she eats with her hands...that was hard. I know this child, and I know he didn't mean to be hurtful. He's a child and he asked a question. It hurt my heart though, because it made me think of all the people who DON'T ask the question, and then judge her. Or me.
The real test was when all of the kids went outside, and she actually held her own. First of all, she opened up and had a lot more fun. I truly think that it was just a lot for her in a small area with a lot of people. These are things I never think of, but will have to start. I couldn't let her play the games, but she had fun ANYWAY, and that's what matter right? There was a man there, whom I don't know very well, but I could tell he had a heart for the underdog. He picked her right up and ran her through one of the balloon games. It made her day...and mine too.
On the way home, I asked her if she had fun. "Yesh. I had fun with Mommy and Oliva and Alura and AAAAriiiies (hmmm, think she likes that one, LOL), and with Cara and Cara's mom and my Mrs. Norton and where was Daniel? Where's Jessica? And outside with bike and lots of balloons. I love Olivia's happy birthday Mommy." One of those kids truly was NOT like the others...and I am so incredibly blessed that she's mine.
We got there and there were a lot of people there. All people that she knows, but she usually sees them at church. She was SO excited to go to Olivia's party, she almost fell out of her car seat trying to get out of the car. After about 10 minutes though, I noticed her, standing by herself off to the side. She's not a loner...she was just hanging back and watching the action. I tried to engage her with the other kids, but realized really quickly that she thought she was playing with them. Just standing there, watching them play was enough for my girly-bug. The next thing I noticed was her table manners, or lack thereof. Now, it would be unfair for me to say that this is completely a stroke thing. Grace has always had a problem with grabbing before she asks. However, we were working through that before November and she was actually doing very well. I saw her put her hands on so many people's hot dogs I wanted to just cry. Thank God most of the kids didn't notice, and the older one was gracious ( love you Alura!). She also pretty much refuses to use utensils these days. I've been racking my brain, trying to figure out why. I watched her at the party yesterday, trying to stab a hot dog with a fork. She missed every time, then she finally got it and the plate fell on the floor. She's just learning to adapt, just like the rest of us are. So, I let her eat her cake with her hands. One of the older kids asked me why she eats with her hands...that was hard. I know this child, and I know he didn't mean to be hurtful. He's a child and he asked a question. It hurt my heart though, because it made me think of all the people who DON'T ask the question, and then judge her. Or me.
The real test was when all of the kids went outside, and she actually held her own. First of all, she opened up and had a lot more fun. I truly think that it was just a lot for her in a small area with a lot of people. These are things I never think of, but will have to start. I couldn't let her play the games, but she had fun ANYWAY, and that's what matter right? There was a man there, whom I don't know very well, but I could tell he had a heart for the underdog. He picked her right up and ran her through one of the balloon games. It made her day...and mine too.
On the way home, I asked her if she had fun. "Yesh. I had fun with Mommy and Oliva and Alura and AAAAriiiies (hmmm, think she likes that one, LOL), and with Cara and Cara's mom and my Mrs. Norton and where was Daniel? Where's Jessica? And outside with bike and lots of balloons. I love Olivia's happy birthday Mommy." One of those kids truly was NOT like the others...and I am so incredibly blessed that she's mine.
CPSE meeting.
So, before the trip to Rochester this week, I went to the CPSE meeting for Grace. CPSE is the preschool counsel for disabled kids in Horseheads, the committee that will be taking over her physical, occupational, and speech therapy. I'm VERY "happy" to report that she has qualified for everything. She will receive three sessions of each therapy per week, PLUS three 1 hour sessions with a preschool teacher to help her with learning and behavioral skills. I am praying that this will be exactly what she needs.
People have asked me how much the stroke has set her back quite often. She is such a happy, playful child, that sometimes it is hard to tell. Here are a few statistics that I can share with you.
These are percentages from a test that the therapists give her before she can qualify for services. As you can see, all of her scores dropped DRASTICALLY. ***Click on the chart to see it larger- it came out much smaller than I expected. ***
It's VERY hard to see these scores and to know that your child is this far behind. There were times in that meeting that I just wanted to cry. However, she IS doing well and she IS making gains every single day!! God has been SO incredible to us, and this time and these delays are just part of His plan for her. I can't wait to see how He plans to use this time in our lives. Maybe there's a therapist just waiting for someone to reach them?? One that could only be reached by a sweet three year old with great faith in Jesus?
People have asked me how much the stroke has set her back quite often. She is such a happy, playful child, that sometimes it is hard to tell. Here are a few statistics that I can share with you.
These are percentages from a test that the therapists give her before she can qualify for services. As you can see, all of her scores dropped DRASTICALLY. ***Click on the chart to see it larger- it came out much smaller than I expected. ***
It's VERY hard to see these scores and to know that your child is this far behind. There were times in that meeting that I just wanted to cry. However, she IS doing well and she IS making gains every single day!! God has been SO incredible to us, and this time and these delays are just part of His plan for her. I can't wait to see how He plans to use this time in our lives. Maybe there's a therapist just waiting for someone to reach them?? One that could only be reached by a sweet three year old with great faith in Jesus?
Friday, April 16, 2010
Happy Birthday cake...for breakfast anyone?
Most mornings, we are rather busy. Between PT and OT, visiting nurses and doctors appointments--it's usually get up and go. Some days though, we have that little bit of extra time. On those morning, I like to ask Gracie what she would LIKE for breakfast. Sometimes, it's a little too out there, but usually it's within the realms of breakfast food. Today was one of those days. Gracie got up quite early after going to sleep quite early last night, and we were spending some good time together. I asked her what she wanted me to make her for breakfast and she answered "Umm. I just want to have some Happy birthday cake!!" with a big grin. Of course, I told her cake is a no go for morning...so she decided on "macioni and cheese". Poor kid. It sounded so good to her. So one more time, I asked her..."Happy Birthday cake,, Mommy!!" with an even bigger grin. I asked her who's birthday it was today ( we don't have any today), and she picked up her baby doll and said " Today is Faith's Happy Birthday party, Mom!!" So cute!! She finally decided on her breakfast, a highly nutritious one of Fruit Loops, and we went to her pediatrician for her hospital recheck. After that, we decided to enjoy this last day of nice weather. (Only in NY, will it be 78 degrees one day and a forecast of snow the next!!) We picked up my sister and James and headed to the park.
The trip to the park tired the kiddo's out, so while they napped, I went to the grocery store. My mind kept going back to Gracie saying it was Faith's happy birthday. I ended up buying the stuff to make a cake. I got home and made dinner and the cake. After dinner was over, I sent the kids outside with my niece and nephew, and I got the party ready.
This is Emily and Faith. Emily has been with the family now for 3 years!! Faith is actually only a few months old, but we like to celebrate around here!
Gracie, holding Faith when she came in the room. She was so excited that we were having a birthday party for her!! It was so sweet!
The cake. Josiah was just excited to eat. ( See the babies that we invited to the party?)
Such a good Mommy!!
And of course...two pieces of cake made for a hyper Gracie!!
Such good memories!! What fun!
Such good memories!! What fun!
Thursday, April 15, 2010
Rochester
So, we've had a pretty busy few days. On Sunday evening, Josiah came down with a nice 103 fever. A little Tylenol and he was happy enough to go sit in church with me. By Monday morning, he was acting very sick. Poor baby...so I took him to the pediatrician. He said that it was just a virus and it should run its course. Unfortunately, it was also contagious. On Tuesday, Grace acted fine all day. A little more tired than normal, but otherwise fine. Then she laid down for her afternoon nap, and woke up lethargic and with a 103 fever. I called her pediatrician, just for reassurance that this was the same virus. He wasn't in, but the nurses wanted to see her. So, we went in. The next thing I knew we were on the way to Arnot, being admitted for a CT scan. I was fine with that...but then we got to Arnot and the next thing I knew, I found out we were being transferred to Strong. Just for the record, that kind of news shouldn't just be dropped on a mom who's child has been through what Grace has. I was staring directly at my girl, who was upset and scared (and sick) but otherwise OK. I was flipping out, wondering what in the world was going on that I didn't see! It turns out that the pediatrician on call had contacted Gracie's neurosurgeon and her neurologist and had decided that the best place for her was Rochester. See, Elmira doesn't have a pediatric neurosurgeon, and the fear was that her shunt would need to be tapped in order to rule out a shunt infection. So, we had the CT at Arnot and she got an IV and blood drawn. Before we knew it, an ambulance was there and I was driving 85-90 MPH, trying to keep up. When we got there, she was in her room and acting pretty good. I found out that her CT had come back looking good, but that her infection markers in her blood work were high. At that point, it was a wait and see game. So, we got her in bed (it was about 11pm) and tried to get her to go to sleep. At about 1am, our door swung open and two men came in to CLEAN the room. AT 1 am!!! Ugh. I really though we must have been getting a room mate, but nobody ever came. They cleaned that room for over an hour, and THREW away Gracie's potty seat! I woke up the next morning and went to put her on the potty, and it was GONE. Hmmm. Oh well. We now have a pretty pink princess potty seat.
Wednesday morning the doctors came in and said they wanted to do an X ray shunt series and a chest X ray. She is so scared of the X ray, and it's even worse at Strong. They wheel you down to the basement, and into the OR prep room. So there are all these people, intubated and knocked out all around us. Then the X ray technician comes in and gets us...the hard part is that I have to be the one to hold her down. I can't imagine, being three years old and having this big machine come at me, as the person I trust most in the world, HOLDS ME DOWN. It's always a traumatic experience, for both of us. We got through it though, and back upstairs we went. Those tests came back fine as well, and later the blood work from the morning came back. Her infection markers were back down within the normal range. So, we came home on Thursday morning,, still unsure what was going on. She still doesn't feel 100%, but she's better.
Wednesday morning the doctors came in and said they wanted to do an X ray shunt series and a chest X ray. She is so scared of the X ray, and it's even worse at Strong. They wheel you down to the basement, and into the OR prep room. So there are all these people, intubated and knocked out all around us. Then the X ray technician comes in and gets us...the hard part is that I have to be the one to hold her down. I can't imagine, being three years old and having this big machine come at me, as the person I trust most in the world, HOLDS ME DOWN. It's always a traumatic experience, for both of us. We got through it though, and back upstairs we went. Those tests came back fine as well, and later the blood work from the morning came back. Her infection markers were back down within the normal range. So, we came home on Thursday morning,, still unsure what was going on. She still doesn't feel 100%, but she's better.
My sicky girl on Wednesday after her shunt series.
Starting to feel a bit better!! With Amanda, my niece.
Playing the star tambourine at the music hour, right before we went home. 
Saturday, April 10, 2010
1...2...3...
So Gracie is sitting in the living room, playing with her flash cards right now. She just sang 1...2...3 Jesus Loves me. 3 and 4... He doesn't need me to wear this patch anymore. Oh I am cracking up! She often makes up her own words to songs, but she doesn't usually rhyme!! These patches are the very bane of her existence! She does well with them sometimes, but today the stupid thing just won't stay on. She has 2 patches and a band aid holding it on, and it's still falling off. I'm cheap though. We paid $20 for these things and we wanted to use them. I'm coming to the realization though that it's better to spend a few more dollars and get the ones that will stay on. It sure will be worth it if it keeps her from having eye surgery. Can I ask you all to pray about that, by the way? She doesn't go back to the ophthalmologist until July, so we are hopeful to see a TON of progress by then! Here she is wearing her "puppy dog"patch. This was a few weeks ago, after her concussion. Notice the nice yellow in between her eyes? Doesn't she look cute with the patch on though?
This Tuesday, I have to go to her CPSE meeting. She has been getting PT and OT, twice a week since she came home. The therapists usually work with elderly stroke patients though. CPSE is through the school district and work with kids. I am PRAYING, PRAYING, PRAYING that they will take her on!! She NEEDS to have Speech Therapy. She hasn't had it since she left St. Mary's. Her speech itself is going well, but she ASPIRATED and that wouldn't have happened if she had been having ST right along.
And now, for my lesson of the day: did you know that original meaning of our English word God is "the Good one"? How perfect. He IS Good!
This Tuesday, I have to go to her CPSE meeting. She has been getting PT and OT, twice a week since she came home. The therapists usually work with elderly stroke patients though. CPSE is through the school district and work with kids. I am PRAYING, PRAYING, PRAYING that they will take her on!! She NEEDS to have Speech Therapy. She hasn't had it since she left St. Mary's. Her speech itself is going well, but she ASPIRATED and that wouldn't have happened if she had been having ST right along.
And now, for my lesson of the day: did you know that original meaning of our English word God is "the Good one"? How perfect. He IS Good!
Monday, April 5, 2010
Resurrection Sunday!
First of all, it sure was a nice change to spend a holiday at home!! Gracie had a great Easter Sunday. We dyed our eggs the night before... and I got NO pictures. Bad mommy. She had a lot of fun though. We would drop an egg in the colored water and she'd hold her breath a little until we'd pull it back out. Then she's see whatever color it had turned and she'd say "WOW!" or "Ooooohhh". It was very cute.
Easter morning came and she woke me up, saying "Hey mom, Jesus day." (Usually I'm always up before my kids, but she was up at like 5 am!!) She hopped into our bed and went back to sleep for an hour,, and then it was time to make our Resurrection rolls. She had fun making them...I kept telling her that we had to seal them up tight like Jesus' tomb was. She'd ask-"Jesus die, mom?" I'd start to answer her, and she'd yell "Uh uh, He's alive!" I have no clue where she learned that one, but it
made my YEAR!!
She was a bit concerned about the disappearance of the marshmallows, but her Easter gifts helped out. Her favorite gift was by far her new Bible. We decided that it's time for a big girl Bible for her. She just LOVES it. I'm so thankful that she's already showing a love for God's Word.
Soon, it was time to head to church---but not without a few pictures of my two cuties!!
All in all, a great day!! Love to all, and Happy Easter!
Easter morning came and she woke me up, saying "Hey mom, Jesus day." (Usually I'm always up before my kids, but she was up at like 5 am!!) She hopped into our bed and went back to sleep for an hour,, and then it was time to make our Resurrection rolls. She had fun making them...I kept telling her that we had to seal them up tight like Jesus' tomb was. She'd ask-"Jesus die, mom?" I'd start to answer her, and she'd yell "Uh uh, He's alive!" I have no clue where she learned that one, but it
made my YEAR!!
She was a bit concerned about the disappearance of the marshmallows, but her Easter gifts helped out. Her favorite gift was by far her new Bible. We decided that it's time for a big girl Bible for her. She just LOVES it. I'm so thankful that she's already showing a love for God's Word.
Soon, it was time to head to church---but not without a few pictures of my two cuties!!
All in all, a great day!! Love to all, and Happy Easter!
Friday, April 2, 2010
Easter cookies...
So, we made and decorated Easter cookies tonight. Such fun!! I couldn't get many good pictures because I had frosting all over my fingers, but I had to take a few!
It all started so innocently. A cute little girl and a butter knife full of icing...
Soon, the tide began to shift...
Before long we were lost in a sea of frosting!!
and she was loving it!
Oh how I love that smile!!
It all started so innocently. A cute little girl and a butter knife full of icing...
Soon, the tide began to shift...
Before long we were lost in a sea of frosting!!
and she was loving it!
Oh how I love that smile!!
Monday, March 22, 2010
It's high time...
that I had a post of what we are thankful for around here!!
The past couple of days, I have been looking through the old blog posts and pictures. Wow. I noticed that the past few posts have been somewhat **sour**. I sound like some whiny, pathetic woman with no hope!! Which by the way, I sound like on a daily basis--but like I've said before, blog land gets a positive spin.
ANYWAY!! As I was saying, I was looking back over my old posts...and I couldn't help but notice so many differences in my girl!!
---Her eyesight seems to be getting better everyday. She hates to wear the eye patch, but we usually get it on her 4 out of the 7 days. While her eye still wanders, I have been noticing lately that she seems to have a LITTLE better hand eye coordination on the affected side.
---Her wheelchair is sitting in the trunk of my moms car, where it has been since we went to the dentist last week. She didn't use it then either, we had it along just in case. The last time I can remember that she used it was when we were at the mall a few weeks ago. She was already tired that day, so she wanted to sit and ride. That doesn't happen often though.
---She has been trying very hard to retrain on the potty. This is probably one of the most difficult things for her to relearn. Her muscles there do not work the way they used to and she just doesn't feel when she has to go. Sometimes I'll hear, "I'm peeing!!" as she frantically tries to get to the bathroom. We're not where we were (fully trained)...but we're getting there.
---Physical and occupational therapy are going well. While she hasn't had any speech therapy since we have been home, her speech has improved tenfold since before the stroke.
---Her hair is growing!!
The past couple of days, I have been looking through the old blog posts and pictures. Wow. I noticed that the past few posts have been somewhat **sour**. I sound like some whiny, pathetic woman with no hope!! Which by the way, I sound like on a daily basis--but like I've said before, blog land gets a positive spin.
ANYWAY!! As I was saying, I was looking back over my old posts...and I couldn't help but notice so many differences in my girl!!
---Her eyesight seems to be getting better everyday. She hates to wear the eye patch, but we usually get it on her 4 out of the 7 days. While her eye still wanders, I have been noticing lately that she seems to have a LITTLE better hand eye coordination on the affected side.
---Her wheelchair is sitting in the trunk of my moms car, where it has been since we went to the dentist last week. She didn't use it then either, we had it along just in case. The last time I can remember that she used it was when we were at the mall a few weeks ago. She was already tired that day, so she wanted to sit and ride. That doesn't happen often though.
---She has been trying very hard to retrain on the potty. This is probably one of the most difficult things for her to relearn. Her muscles there do not work the way they used to and she just doesn't feel when she has to go. Sometimes I'll hear, "I'm peeing!!" as she frantically tries to get to the bathroom. We're not where we were (fully trained)...but we're getting there.
---Physical and occupational therapy are going well. While she hasn't had any speech therapy since we have been home, her speech has improved tenfold since before the stroke.
---Her hair is growing!!
Friday, March 19, 2010
My new address:
600 Roe Ave
Elmira, NY
14901
Ok, this is JUST A JOKE, so don't send mail there, LOL! I really feel like we should take up residence at the ER though! We have been there 3 times this week. Twice on Monday! First, Josiah had another allergic reaction. This time, we know what caused it though. PEANUTS. Yep. Peanuts. So guess what we are now doing? That's right...reading EVERY label that comes into the house and avoiding Texas Roadhouse like the plague!
Monday night, after our trip to the ER for Josiah we came home and Grace fell asleep easily. At about 10pm, she woke up, crying terribly. I immediately thought she was having another nightmare, but then she started to gasp for breath. So, we had to call 911. When the ambulance got there, they took her o2, and it was only registering at 67 and she was noticeably cyanotic. The EMT put oxygen on her, and by the time we got to the ER, it was up to 98. She had a chest x ray and it came back fine, which was reassuring. The doctor said that she probably just got some phlegm from the pneumonia caught in her vocal chords and they closed. He said it can happen to anyone...but obviously a child that has had a stroke and aspiration pneumonia is probably more susceptible. So, we came home and all was well. I think Tuesday was pretty uneventful, since I don't seem to remember it that well. Oh yeah, we went to the park, I think! Wednesday we had to go to Rochester for her dentist. She needs a cleaning and a couple fillings, so she has to go to the OR for that. Thursday, I took Josiah for his 12 month check-up, a little late. We got there and found out he has double ear infections. One of them was so bad that his pediatrician thought the ear drum would probably burst last night. Thank God, it stayed intact, but he's a hurting baby. We got home and I was getting ready to take the kids out for a walk in the beautiful weather...when Grace fell. She was coming from the bathroom and she tripped into the kitchen and SLAMMED into the table, right in between her eyes. She falls a lot, so I thought she would be fine. I picked her up though, and she passed out. She came to within about 30 seconds, but she was just screaming and then started to vomit. So...we had to call 911 AGAIN. She had a CT scan and it looked fine, but she does have a concussion and NASTY bruising. She's also more unsteady than normal today. We have to go this afternoon for a re-check. I will update later!!
Elmira, NY
14901
Ok, this is JUST A JOKE, so don't send mail there, LOL! I really feel like we should take up residence at the ER though! We have been there 3 times this week. Twice on Monday! First, Josiah had another allergic reaction. This time, we know what caused it though. PEANUTS. Yep. Peanuts. So guess what we are now doing? That's right...reading EVERY label that comes into the house and avoiding Texas Roadhouse like the plague!
Monday night, after our trip to the ER for Josiah we came home and Grace fell asleep easily. At about 10pm, she woke up, crying terribly. I immediately thought she was having another nightmare, but then she started to gasp for breath. So, we had to call 911. When the ambulance got there, they took her o2, and it was only registering at 67 and she was noticeably cyanotic. The EMT put oxygen on her, and by the time we got to the ER, it was up to 98. She had a chest x ray and it came back fine, which was reassuring. The doctor said that she probably just got some phlegm from the pneumonia caught in her vocal chords and they closed. He said it can happen to anyone...but obviously a child that has had a stroke and aspiration pneumonia is probably more susceptible. So, we came home and all was well. I think Tuesday was pretty uneventful, since I don't seem to remember it that well. Oh yeah, we went to the park, I think! Wednesday we had to go to Rochester for her dentist. She needs a cleaning and a couple fillings, so she has to go to the OR for that. Thursday, I took Josiah for his 12 month check-up, a little late. We got there and found out he has double ear infections. One of them was so bad that his pediatrician thought the ear drum would probably burst last night. Thank God, it stayed intact, but he's a hurting baby. We got home and I was getting ready to take the kids out for a walk in the beautiful weather...when Grace fell. She was coming from the bathroom and she tripped into the kitchen and SLAMMED into the table, right in between her eyes. She falls a lot, so I thought she would be fine. I picked her up though, and she passed out. She came to within about 30 seconds, but she was just screaming and then started to vomit. So...we had to call 911 AGAIN. She had a CT scan and it looked fine, but she does have a concussion and NASTY bruising. She's also more unsteady than normal today. We have to go this afternoon for a re-check. I will update later!!
Tuesday, March 16, 2010
1st visit to the park...
well, in 2010 that is!
I took the two kids over to Thorne Street ( a park a few blocks away) this evening. I guess I was feeling a bit daring, because I went by myself. I only have 2 kids...and it's hard at the park by myself!?! Gracie is everywhere though...and it's not like any other 3 year old. See, I was standing there talking to a very nice woman, and she also had a 3 year old. She never once had to excuse herself to redirect her son away from the creek. She never had to run after him because he was excited and just going way too fast...he was never at a risk for falling headfirst. So...the park is a tiring experience.
It's the good kind of tiring.
The kind of tiring that ends with "that was fun!" from an excited little girl in the backseat. "We go again morrow Mommy?"
***I am noticing more and more just how much the sun bothers my girls eyes. I tried to take some pictures, but she wouldn't look at the camera. The sun was directly in her eyes wherever I moved and it just seemed to hurt her. She has sunglasses, but unfortunately isn't good about keeping them on.
***Since I feel like I have complained about people so much lately...tonight after the park, we went to Target. (I got a great deal on pull-ups!!) Gracie was trying to pick something up off of the floor, and I clapped my hands because she was able to get it and get back up without losing her balance. (We rejoice at little things around here!) A lady around the corner heard us and came over to talk to Gracie. She told her how pretty her sweatshirt is and that she was being a good big sister. Then she asked me what had happened. It might seem like she was way too forward, but it was a huge breath of fresh air. instead of standing there and wondering if I was just strange ( which I am), she took a moment and inquired. She made Gracie feel good about herself.
Some pictures...not very good, but at
least they're in them!!
I took the two kids over to Thorne Street ( a park a few blocks away) this evening. I guess I was feeling a bit daring, because I went by myself. I only have 2 kids...and it's hard at the park by myself!?! Gracie is everywhere though...and it's not like any other 3 year old. See, I was standing there talking to a very nice woman, and she also had a 3 year old. She never once had to excuse herself to redirect her son away from the creek. She never had to run after him because he was excited and just going way too fast...he was never at a risk for falling headfirst. So...the park is a tiring experience.
It's the good kind of tiring.
The kind of tiring that ends with "that was fun!" from an excited little girl in the backseat. "We go again morrow Mommy?"
***I am noticing more and more just how much the sun bothers my girls eyes. I tried to take some pictures, but she wouldn't look at the camera. The sun was directly in her eyes wherever I moved and it just seemed to hurt her. She has sunglasses, but unfortunately isn't good about keeping them on.
***Since I feel like I have complained about people so much lately...tonight after the park, we went to Target. (I got a great deal on pull-ups!!) Gracie was trying to pick something up off of the floor, and I clapped my hands because she was able to get it and get back up without losing her balance. (We rejoice at little things around here!) A lady around the corner heard us and came over to talk to Gracie. She told her how pretty her sweatshirt is and that she was being a good big sister. Then she asked me what had happened. It might seem like she was way too forward, but it was a huge breath of fresh air. instead of standing there and wondering if I was just strange ( which I am), she took a moment and inquired. She made Gracie feel good about herself.
Some pictures...not very good, but at
least they're in them!!
Saturday, March 13, 2010
Grace aspirated...
Last night, we went and got the kids pictures taken and then went out for dinner. Grace was drinking strawberry milk, from a wide straw. I should have known better than to let her use that straw but I let her try it. She choked. It was pretty good one too, coughing, sputtering, gasping a little blue tint to the skin. Sadly, it didn't even phase me!! Last night though, she developed a coarse, wet cough. She's had a cough at night anyway, but this was different. At about 4 am, I had that feeling in the pit of my stomach, that she had aspirated. I called her doctor first thing when they opened, and he wanted to see her. He heard the same thing I do, a much wetter sounding lung. He could have sent us for a chest x-ray, but he knows Grace very well. He decided to just treat the aspiration pneumonia, because he's heard pneumonia in her lungs so often now. It also saves her from having yet another x ray and more radiation. So she is on an antibiotic for the next 10 days, and I have to watch her very carefully for fever and signs that it is worsening.
Friday, March 12, 2010
Great peace have they which love thy law:...
and nothing shall offend them."
Hmm. It has become quite apparent to me in recent weeks that I definitely do not love God's law as well as I should. Please sit down for what I'm going to tell you next, it's a shocker.
I'm a sinner.
Ok, now that you have picked your jaw up and re affixed your eyeballs in their sockets, let me explain!
I get offended daily lately. Or at least every day that I happen to have to take Grace outside the house. Two nights ago, I had to take a trip to Wal Mart for some necessities. We got ourselves around and ready, picked up my niece, and off we went. I was getting some pictures done, so Mary and Grace went to the kids department to look for some warmer weather clothes for Grace. Mary texted me that she thought Gracie had had an accident of the stinky variety. This is no big deal, she still has no muscle memory in her bowels, and she might never again. I met them to take her potty...and then realized she had a very upset tummy. So, into the bathroom we went, where I started to clean her up. In walks a lady, who makes a very loud "ewww" noise. Ok, whatever, it DID stink. So then, she walks past us and acts as though she's gagging. Again, it didn't really bother me. I like to be dramatic just as much as the next person. Then she asked me how old Grace was. Not in the sweet, "how old is your daughter?" way. More like-" How old is she ANYWAY?" I answered (kindly) that she is 3, and got that WONDERFUL response. " She should be potty trained by now. My kids were all trained before they were 2. Lazy parents these days are a shame." Yep, I was offended. Very offended. But, I mustered up my smile (thanks HAC) and said " Well, Grace had a stroke back in November and she hasn't regained her muscle control in those areas yet. She used to be potty trained. (I know, I should have left that out!) She was touch and go for quite a while there, so I just thank God for all that she regained." She left. She did not apologize, did not blush. She left. My beautiful little girl sat there, sick and crying because she KNEW that lady had been picking on her.
So, yes I get offended. I wish I didn't. I wish that I had that same tenacity my girl does. Most days I try to smile through the storm, just like she does...but sometimes it just gets to be too much. See, that little girl is OURS. She is OUR pride and joy. She is OUR miracle. It hurts to see her face when she realizes she can't run behind her friends at church. It hurts that people automatically think that she's dumb, even though she's very intelligent. It hurts that people that don't know her ask if she has ADD, because she has a hard time sitting still. It hurts when parents ALLOW their children to pick on her eyes or her short hair. It hurts when adults don't take the time to notice that she's in a dress and all pink, and call her a boy. SHE KNOWS when people say these things...and it hurts me because it hurts her. I thank God for that pain though. I will never again look at a child that is running wild and automatically judge. I have no idea what has happened in that child's life or body. That woman with way to short hair? She might be recovering from cancer. She MIGHT have had brain surgery!! The man that walks the street and looks like a drunkard? He might have fought for our country and been injured. Jesus would have loved all of these people...not judged them. Jesus DOES love all of these people.
One day my kids will probably read this blog. So Gracie and Josiah (and any others): Be nice. Don't be fake, don't be condescending. Don't judge that which is not yours to judge. Learn to turn the other cheek and give the benefit of the doubt. Love the seemingly unlovable. It will surprise you what God can do.
Hmm. It has become quite apparent to me in recent weeks that I definitely do not love God's law as well as I should. Please sit down for what I'm going to tell you next, it's a shocker.
I'm a sinner.
Ok, now that you have picked your jaw up and re affixed your eyeballs in their sockets, let me explain!
I get offended daily lately. Or at least every day that I happen to have to take Grace outside the house. Two nights ago, I had to take a trip to Wal Mart for some necessities. We got ourselves around and ready, picked up my niece, and off we went. I was getting some pictures done, so Mary and Grace went to the kids department to look for some warmer weather clothes for Grace. Mary texted me that she thought Gracie had had an accident of the stinky variety. This is no big deal, she still has no muscle memory in her bowels, and she might never again. I met them to take her potty...and then realized she had a very upset tummy. So, into the bathroom we went, where I started to clean her up. In walks a lady, who makes a very loud "ewww" noise. Ok, whatever, it DID stink. So then, she walks past us and acts as though she's gagging. Again, it didn't really bother me. I like to be dramatic just as much as the next person. Then she asked me how old Grace was. Not in the sweet, "how old is your daughter?" way. More like-" How old is she ANYWAY?" I answered (kindly) that she is 3, and got that WONDERFUL response. " She should be potty trained by now. My kids were all trained before they were 2. Lazy parents these days are a shame." Yep, I was offended. Very offended. But, I mustered up my smile (thanks HAC) and said " Well, Grace had a stroke back in November and she hasn't regained her muscle control in those areas yet. She used to be potty trained. (I know, I should have left that out!) She was touch and go for quite a while there, so I just thank God for all that she regained." She left. She did not apologize, did not blush. She left. My beautiful little girl sat there, sick and crying because she KNEW that lady had been picking on her.
So, yes I get offended. I wish I didn't. I wish that I had that same tenacity my girl does. Most days I try to smile through the storm, just like she does...but sometimes it just gets to be too much. See, that little girl is OURS. She is OUR pride and joy. She is OUR miracle. It hurts to see her face when she realizes she can't run behind her friends at church. It hurts that people automatically think that she's dumb, even though she's very intelligent. It hurts that people that don't know her ask if she has ADD, because she has a hard time sitting still. It hurts when parents ALLOW their children to pick on her eyes or her short hair. It hurts when adults don't take the time to notice that she's in a dress and all pink, and call her a boy. SHE KNOWS when people say these things...and it hurts me because it hurts her. I thank God for that pain though. I will never again look at a child that is running wild and automatically judge. I have no idea what has happened in that child's life or body. That woman with way to short hair? She might be recovering from cancer. She MIGHT have had brain surgery!! The man that walks the street and looks like a drunkard? He might have fought for our country and been injured. Jesus would have loved all of these people...not judged them. Jesus DOES love all of these people.
One day my kids will probably read this blog. So Gracie and Josiah (and any others): Be nice. Don't be fake, don't be condescending. Don't judge that which is not yours to judge. Learn to turn the other cheek and give the benefit of the doubt. Love the seemingly unlovable. It will surprise you what God can do.
Monday, March 8, 2010
A day in the life...part 2
Within the last ten minutes, Gracie has actually cracked me up about 200 times!! I figure I'll write some of the cute things down here, hopefully you will laugh as well!
My friend Jill called, she is going to perm my (once naturally curly, thanks Josiah!) hair on Friday. Gracie was VERY good while we were on the phone, because she was eavesdropping the whole time. Our conversation after the call ended:
"Mrs. Rogereegis do my mommy's hair?"
"Yes, on Friday."
"She shave Gracie's head?"
"No, honey the doctor did when you had surgery."
"Oh. She make mommy's hair pretty?"
"I hope so."
"Mrs. Rogereegis make my mommy's hair purple?"
"No!!!"
"My mommy's hair will be pretty purple. I need the phone. Pease. Pease? Pretty pease???"
"Why?"
"I tell Mrs. Rogereegis to make my mommy hair pretty purple!"
Maniacal laughter.
Another friend dropped off a wagon for us just a little while before that. Grace and Josiah played in it for a while, and then I told them it had to go outside until tomorrow. The conversation starts with me.
"Honey we will go for a walk tomorrow with Nick and James."
"I just waaaaannnnt to go walk now tomorrow with just my Josiah and my Grace Elliana and my mommy Michelle Richards." **half crying, half whining**
"It's getting chilly baby, and mommy isn't dressed to go for a walk ( I didn't get dressed today...last night was a rough one.)
"But I just really NEEEED to walk outside in the wagon now and take my tup and my Josiah's bottle and Nick's wipes. I reaaaallly need to go outside and walk and take the wagon that My Mrs. Daniel Norton (my friends 2 year old son, by the way) brought for me!! Mommy?"
"What Grace?" **major exasperation**
" Go for a walk in the wagon and sing Jesus songs?"
How in the WORLD do you tell a child no, when she wants to go walk outside and sing about Jesus? Especially when your pastor has preached about singing to God two weeks in a row?
Just before bed, we were sitting in the kitchen. I sat down on one of the chairs and she told me, very sweetly, not to sit there. I asked her why-
"Those chairs are for big people only."
"Mommy's a big person."
"No, they're for big people. Grandma and Grandpa and Tommy and Georgie and Nick (who's 2)."
"Mommy's a big person, too."
"No."
"What am I then?"
"My only mommy. With pretty purple hair."
More maniacal laughter...
My friend Jill called, she is going to perm my (once naturally curly, thanks Josiah!) hair on Friday. Gracie was VERY good while we were on the phone, because she was eavesdropping the whole time. Our conversation after the call ended:
"Mrs. Rogereegis do my mommy's hair?"
"Yes, on Friday."
"She shave Gracie's head?"
"No, honey the doctor did when you had surgery."
"Oh. She make mommy's hair pretty?"
"I hope so."
"Mrs. Rogereegis make my mommy's hair purple?"
"No!!!"
"My mommy's hair will be pretty purple. I need the phone. Pease. Pease? Pretty pease???"
"Why?"
"I tell Mrs. Rogereegis to make my mommy hair pretty purple!"
Maniacal laughter.
Another friend dropped off a wagon for us just a little while before that. Grace and Josiah played in it for a while, and then I told them it had to go outside until tomorrow. The conversation starts with me.
"Honey we will go for a walk tomorrow with Nick and James."
"I just waaaaannnnt to go walk now tomorrow with just my Josiah and my Grace Elliana and my mommy Michelle Richards." **half crying, half whining**
"It's getting chilly baby, and mommy isn't dressed to go for a walk ( I didn't get dressed today...last night was a rough one.)
"But I just really NEEEED to walk outside in the wagon now and take my tup and my Josiah's bottle and Nick's wipes. I reaaaallly need to go outside and walk and take the wagon that My Mrs. Daniel Norton (my friends 2 year old son, by the way) brought for me!! Mommy?"
"What Grace?" **major exasperation**
" Go for a walk in the wagon and sing Jesus songs?"
How in the WORLD do you tell a child no, when she wants to go walk outside and sing about Jesus? Especially when your pastor has preached about singing to God two weeks in a row?
Just before bed, we were sitting in the kitchen. I sat down on one of the chairs and she told me, very sweetly, not to sit there. I asked her why-
"Those chairs are for big people only."
"Mommy's a big person."
"No, they're for big people. Grandma and Grandpa and Tommy and Georgie and Nick (who's 2)."
"Mommy's a big person, too."
"No."
"What am I then?"
"My only mommy. With pretty purple hair."
More maniacal laughter...
Sunday, March 7, 2010
Just some pictures
The kids were sitting on my lap before church this morning...
This is my niece Mary, wearing Gracie's Easter bonnet. Grace was fine here, she's only in the wheelchair because she gets tired when we shop. (Mary and I can make it an all day adventure!!)
Gracie and Josiah having fun at home. She was "helping" me clean by riding the vacuum cleaner.
This is my niece Mary, wearing Gracie's Easter bonnet. Grace was fine here, she's only in the wheelchair because she gets tired when we shop. (Mary and I can make it an all day adventure!!)
Gracie and Josiah having fun at home. She was "helping" me clean by riding the vacuum cleaner.
Friday, March 5, 2010
A day in the life...
Grace-"Mommy I waked up!! Where's Josiah? Josiaaaah!!!??? Josiaaaaah???!!!"
Me-"Josiah's still sleeping Grace...shhh."
Grace-"Where's my Josiah? What's your name? Where's my Damma? I waked up, mommy. I need cereal. Where's Josiah?"
Me- "He's sleeping honey. See, right here. Grandma's probably sleeping too. Let's go potty then mommy will get you some cereal."
Grace- " Noooooo!" (She truly HATES the potty since the stroke. My fault, but we won't get into my parenting failures tonight).
Me- "Gracie you're dry and I'm sure you need to pee pee! (Singing) Here we go loopedy loo here we go loopedy la, here we go loopedy loo all the way to the pee pee pot."
(Yes seriously).
She goes potty, under serious duress.
Grace- "Josiah, wake up. Josiah, wake up. Josiiiiaaaahhhh. Mommy, Josiah waked up."
Josiah- smile, giggle, pull sissy's hair
Grace- "Hi, hi, hi, hi! What's your name? Where's Nick? Where's Nick's mommy? I want cereal."
Me- "Let mommy change Josiah and then we will go get breakfast."
Grace- (very seriously)'"Mommy, I am very very hungry and I need to eat cereal with marshmallows in my mouth."
Ok, so this is really just the first 30 minutes of our day, LOL. Isn't it amazing that just a few months ago, this child wasn't supposed to talk again? I try to remember that throughout the day when she annoys me or is naughty. Sometimes I forget, though...so I come here and post. God has been so good.
Me-"Josiah's still sleeping Grace...shhh."
Grace-"Where's my Josiah? What's your name? Where's my Damma? I waked up, mommy. I need cereal. Where's Josiah?"
Me- "He's sleeping honey. See, right here. Grandma's probably sleeping too. Let's go potty then mommy will get you some cereal."
Grace- " Noooooo!" (She truly HATES the potty since the stroke. My fault, but we won't get into my parenting failures tonight).
Me- "Gracie you're dry and I'm sure you need to pee pee! (Singing) Here we go loopedy loo here we go loopedy la, here we go loopedy loo all the way to the pee pee pot."
(Yes seriously).
She goes potty, under serious duress.
Grace- "Josiah, wake up. Josiah, wake up. Josiiiiaaaahhhh. Mommy, Josiah waked up."
Josiah- smile, giggle, pull sissy's hair
Grace- "Hi, hi, hi, hi! What's your name? Where's Nick? Where's Nick's mommy? I want cereal."
Me- "Let mommy change Josiah and then we will go get breakfast."
Grace- (very seriously)'"Mommy, I am very very hungry and I need to eat cereal with marshmallows in my mouth."
Ok, so this is really just the first 30 minutes of our day, LOL. Isn't it amazing that just a few months ago, this child wasn't supposed to talk again? I try to remember that throughout the day when she annoys me or is naughty. Sometimes I forget, though...so I come here and post. God has been so good.
Thursday, February 25, 2010
Ophthalmology appointment
Well, we woke up this morning to quite a bit of snow on the ground and 2 doctors appointments scheduled. 8 am came and Josiah's doctor called. They were calling all the parents with well visits and canceling, if possible. I was perfectly content with that... I am not much on driving in the snow. I was bound and determined to make sure and get Grace to see the ophthalmologist though. Her appointment was at 2:30, but when I called to make sure that the office was open, the nurse asked if I could come in at 10:15. We decided to take the earlier appointment, warmed up the car, and off we went. Somehow in my rush, I even remembered to call her physical and occupational therapists and let them know that we had a change in plans. (Yes, I am patting myself on the back right now!)
We got to the doctors office (the roads were perfect, by the way) and I was immediately nervous. It was just me, Grace, and the little girl I babysit. I always get bad news when I am alone. Today is also the day (3 years ago now) that I found out my little Lily would have holoprocencephaly. I was alone that day as well, and so it was on my mind. Of course, today, I just didn't want to hear about surgeries or blindness. So, we were sitting in the waiting room and I took a New Testament out of my purse and decided to just flip it open and read a verse. I flipped to 2 Corinthians 1. There in verses 3 and 4 are the words:" 3. Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;
Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Iy was just what I needed...and of course God knew that.
We got back to the exam room and the whole experience started 100 times better than the last time we went to an eye doctor. Of course, we had already seen this doctor and I knew how gentle and patient he is. Gracie took to him right away and did very well. He had to dilate her eyes again, which she hated. The good news though, is that her optical nerve looks great!! He saw NO evidence of cupping, which is what we most concerned about. However, he is concerned about how her eyes are seemingly crossing. He did a bunch of tests and then told me that she is actually favoring her right eye...and barely even using the left. So, we came home with a box of eye patches. She is supposed to wear the patch every day for 2 hours. In a month, we will see how she is doing. She might need surgery down the road, but he will try every other avenue first. I appreciate that greatly.
Pictures of her wearing the patch to come!!
We got to the doctors office (the roads were perfect, by the way) and I was immediately nervous. It was just me, Grace, and the little girl I babysit. I always get bad news when I am alone. Today is also the day (3 years ago now) that I found out my little Lily would have holoprocencephaly. I was alone that day as well, and so it was on my mind. Of course, today, I just didn't want to hear about surgeries or blindness. So, we were sitting in the waiting room and I took a New Testament out of my purse and decided to just flip it open and read a verse. I flipped to 2 Corinthians 1. There in verses 3 and 4 are the words:" 3. Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;
Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Iy was just what I needed...and of course God knew that.
We got back to the exam room and the whole experience started 100 times better than the last time we went to an eye doctor. Of course, we had already seen this doctor and I knew how gentle and patient he is. Gracie took to him right away and did very well. He had to dilate her eyes again, which she hated. The good news though, is that her optical nerve looks great!! He saw NO evidence of cupping, which is what we most concerned about. However, he is concerned about how her eyes are seemingly crossing. He did a bunch of tests and then told me that she is actually favoring her right eye...and barely even using the left. So, we came home with a box of eye patches. She is supposed to wear the patch every day for 2 hours. In a month, we will see how she is doing. She might need surgery down the road, but he will try every other avenue first. I appreciate that greatly.
Pictures of her wearing the patch to come!!
Wednesday, February 24, 2010
Well, we had to make the trip to Rochester again this weekend. I am always glad to get to stay at the RH and see the people who were there before. It's amazing to see all of the progress that can take place in under 6 weeks! Little NICU babies that were on vents and under 3 pounds are now getting ready to go home this week. One mother who's son has brain cancer was still there...but her son was there with her instead of in the hospital. However, there was a sad spirit in the house this time. See, the people at the Ronald McDonald House really become like a family...and this week we lost a member of that family. Remember this post?
Lee is the little boy who had been there for 8 months. His family and ours are actually from the same general area, about a 10 minute drive. Our families got close. Gracie and Lee were actually at the RMH together for about a week, and though he was too sick to get up and play, they got to know each other. He would always get a big smile when he saw her, and she often asked about him when we came home. "Where Little Lee goed?" she would say. Then last week we got the news that he wasn't doing well. Infection had set in to his immune suppressed little body and his kidneys had shut down. There was nothing left to do, so his mom and dad did the only thing they could. They brought him home...to his house...his sisters and brother...his dog. In the last week they gave him every wish they possibly could, including a birthday party. Our family went to the party, and Gracie got to see little Lee one last time. He was in a coma, laying in his bed. It was quite obvious that he was in his last days on Earth. Gracie went to see him and said "Waked up, LeeLee..." but obviously he couldn't. I told her Lee was very sick and she said "no he just asleep." We whispered, "Jesus loves you" to him and then we had to let him rest. He was so peaceful...and Grace was so sweet. He passed away on Sunday morning. I am so sad, that at 3 years old, my baby girl has already said goodbye to a friend. I am so GLAD for God's grace. I can't be 100% sure ( nobody can)...but God has given us peace that Lee is in Heaven. What a day it must have been for him, to go to sleep in the same pain he had been in for over 3 years, his lips cracked and bleeding beyond anything I have ever seen...and to wake up, whole, painless, with JESUS. With Jesus. Sometimes, I just want to sit around for a whole day or two and thank God for Jesus!!
Gracie did have appointments this week in Rochester. She saw the rehab doctor at St. Mary's and they said she is doing fantastic! She has to go back to see them in 6 months. I wish I could have videotaped the reunion with her therapists and nurses. She was running all over, laughing and smiling, she kept asking "whatcha doing here?" like she thought they were all supposed to come home with her last month.
She has another ophthalmology appointment tomorrow. This one is right in Elmira, so it will be much easier for- me at least. Please pray that it goes well. Thanks everyone!!
With the kids I watch every day.
At Josiah's FIRST birthday. She loved that cake!!
The birthday boy!
Lee is the little boy who had been there for 8 months. His family and ours are actually from the same general area, about a 10 minute drive. Our families got close. Gracie and Lee were actually at the RMH together for about a week, and though he was too sick to get up and play, they got to know each other. He would always get a big smile when he saw her, and she often asked about him when we came home. "Where Little Lee goed?" she would say. Then last week we got the news that he wasn't doing well. Infection had set in to his immune suppressed little body and his kidneys had shut down. There was nothing left to do, so his mom and dad did the only thing they could. They brought him home...to his house...his sisters and brother...his dog. In the last week they gave him every wish they possibly could, including a birthday party. Our family went to the party, and Gracie got to see little Lee one last time. He was in a coma, laying in his bed. It was quite obvious that he was in his last days on Earth. Gracie went to see him and said "Waked up, LeeLee..." but obviously he couldn't. I told her Lee was very sick and she said "no he just asleep." We whispered, "Jesus loves you" to him and then we had to let him rest. He was so peaceful...and Grace was so sweet. He passed away on Sunday morning. I am so sad, that at 3 years old, my baby girl has already said goodbye to a friend. I am so GLAD for God's grace. I can't be 100% sure ( nobody can)...but God has given us peace that Lee is in Heaven. What a day it must have been for him, to go to sleep in the same pain he had been in for over 3 years, his lips cracked and bleeding beyond anything I have ever seen...and to wake up, whole, painless, with JESUS. With Jesus. Sometimes, I just want to sit around for a whole day or two and thank God for Jesus!!
Gracie did have appointments this week in Rochester. She saw the rehab doctor at St. Mary's and they said she is doing fantastic! She has to go back to see them in 6 months. I wish I could have videotaped the reunion with her therapists and nurses. She was running all over, laughing and smiling, she kept asking "whatcha doing here?" like she thought they were all supposed to come home with her last month.
She has another ophthalmology appointment tomorrow. This one is right in Elmira, so it will be much easier for- me at least. Please pray that it goes well. Thanks everyone!!
With the kids I watch every day.
At Josiah's FIRST birthday. She loved that cake!!
The birthday boy!
Saturday, February 13, 2010
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