1/27/2010

Last night, some friends that we used to go to church with stopped to see Gracie. She acted very unimpressed the entire time they were here, just going about her normal activity. Tonight, just before she fell asleep, she said "Mommy I really miss Bennett." I thought she meant her friend from Sunday school, since that's her last name. She never says Mr or Mrs, so sometimes it's hard to figure out. Then she said " No Bennett that prayed. Bennett prayed for my mommy and my daddy and my Josiah and my Grace. And for Jesus."
It's no small thing to pray for someone. I have been thinking about this so much lately. Every day, someone tells me that they have been praying for us and for Gracie. Every day. People that we don't really know very well, people that we do know well but never thought took the time to pray, people that we have never met. Taking time out of their lives to pray for us. It is humbling, just to think about it. Then I really started to dig deep and think. If it's humbling to me to think of people that I don't know praying for me, how much more so should it be that Jesus Himself goes before God on my behalf? I read this a few years ago, and it kept coming to mind today.

I have prayed for thee
C.H. Spurgeon

How encouraging is the thought of the Redeemer's never- ceasing intercession for us. When we pray, He pleads for us; and then we are not praying, He is advocating our cause, and by His supplications shielding us from unseen dangers. Notice the word of comfort addressed to Peter--"Simon, Simon, Satan hath desired to have you that he may sift you as wheat; but"--what? "But go and pray for yourself." That would be good advice, but it is not so written. Neither does he say, "But I will keep you watchful, and so you shall be preserved." That were a great blessing. No, it is, "But I have prayed for thee, that thy faith fail not." We little know what we owe to our Saviour's prayers. When we reach the hill-tops of heaven, and look back upon all the way whereby the Lord our God hath led us, how we shall praise Him who, before the eternal throne, undid the mischief which Satan was doing upon earth. How shall we thank Him because He never held His peace, but day and night pointed to the wounds upon His hands, and carried our names upon His breastplate! Even before Satan had begun to tempt, Jesus had forestalled him and entered a plea in heaven. Mercy outruns malice. Mark, He does not say, "Satan hath desired to have you." He checks Satan even in his very desire, and nips it in the bud. He does not say, "But I have desired to pray for you." No, but "I have prayed for you: I have done it already; I have gone to court and entered a counter plea even before an accusation is made." O Jesus, what a comfort it is that thou hast pleaded our cause against our unseen enemies; counter mined their mines, and unmasked their ambushes. Here is a matter for joy, gratitude, hope, and confidence. 

So...all that just to once again say how thankful we are for the prayers and love of God's people. We love you all!!

Mr. Philbrick's classes...

 for praying for our Gracie!!

Victory in Jesus

This has been one of my favorite hymns since I got involved in church. I find myself singing it quite often, just around the house or in the car. Yesterday in church, we sang it as a congregational song. I can't tell you how much of it I actually sang, I was literally SOBBING through it. Do you realize that this song is TRUTH??? Standing there, among 200 others who believed every word that we were singing, I couldn't help but think just how amazing our God is!!

I heard about His healing,
Of His cleansing power revealing.
How He made the lame to walk again

And caused the blind to see;

And then I cried, "Dear Jesus,
Come and heal my broken spirit,"
And somehow Jesus came and brought
To me the victory.

 

 God's so good!! Over and over, I hear about how she "shouldn't" be walking. We were told that she MIGHT walk again, in a few months to a year. People always says how amazing she is, what a fighter she is. I agree wholeheartedly...she is amazing. However, it is God and God alone Who gave those legs the ability to walk again. Was Gracie blind? Yes, I believe she was, as do her doctors. Was it an accident that the very day after I asked people to pray about her sight, that she suddenly began to see? NO!!! It was ALL God, yet again!! Thank You, Jesus!!

 

 

Every time she falls...

she somehow ends up directly on the shunt. UGH. This afternoon, we were waiting for her new physical therapists to get to the house. I was worried that they might miss it, so I wanted to go open the front door. I LEFT her, for about 30 seconds, SITTING on the kitchen floor. The next thing I knew, I heard a loud fall, a scream...and then silence. I got to the kitchen to find her on the floor, holding her breath. She actually made herself pass out. So, I had to give 911 a call. Unfortunately, anytime she loses consciousness (which hopefully won't be that often!), we were told to call right away. Of course, by the time the ambulance got to the house, she was up and fine. As a matter of fact, the therapists had arrived and had her playing in the living room. I probably looked like a complete fool to those paramedics!! :) We will be having physical therapy 3 times a week and occupational 3 times as well. So far, we haven't heard from the speech therapist yet. Hopefully tomorrow!

So tired!!

Wow, what a week!! Being home is wonderful and just what we all needed, but is sure is tiring!! Remember how I talked about having a doctor right there whenever Grace needed anything? Well, now we have to pack up the car, wheelchair, both kids, and head across town!! I guess the hospital did have its own special perks after all.    
Overall, Grace has been doing great ! We worried so much about her wheelchair and we barely ever even use it. As a matter of fact, it hasn't been brought into the house since Tuesday. We use it when we go to the store, etc, but that's it. She had an appointment on Tuesday with her pediatrician. It was so cute, as we walked in, everyone stopped to ask us how she was doing and to say hi to her. Now, you have to understand that this office handles probably half the kids in our area. I was so shocked that the receptionists and nurses all knew what had happened. Her doctor is thrilled with her overall health. He said that he had gotten report from St. Mary's early on and then again later in her stay. He made it sound like she had done better than even the doctors there had expected.
Church seems to overwhelm her (and me!!). We took her on Wednesday evening and she wasn't being quiet ( makes me wish I had trained her to sit in church instead of going the nursery route!), so I was going to take her out. Well, Pastor noticed and said something and EVERYONE started to clap. She was so thrilled...although she has no idea why they were clapping! This morning, I went to SS with her. The 2's and 3's class is pretty big and very ACTIVE, so her teacher really needed me to stay. She did very well though. It was actually much harder for me than her. She used to be so excited to go to Sunday School and play with her friends, etc. Today, she just got OVERWHELMED. The kids always shout out parts of the songs, and she just got nervous. Then they sang a song where the kids fall on the ground at the end. My girl was strapped into a wheelchair. I had to excuse myself for a moment and get a tissue. I know she'll get there though. She barely used her wheelchair at all today, it was mainly just for security. I did leave her for second hour, knowing that there were two people in there, and one of them is one of her favorite people. Of course, there was a laundry list before I left. If she eats, she can't drink. She can only drink out of her cup. If she chokes tell her to cough and then make her talk. If she sounds like she's underwater, make her cough more. She can't feel for potty , so just take her, even if she says no. If her eye gaze deviates, call her name. If she doesn't change her gaze, get me. And of course...WATCH HER HEAD. Wow, I felt terrible, but it is SO important.

Both kids are taking a nap now...I probably should be as well. I know if I lay down I won't want to get back up, though. I DROPPED JOSIAH last night. Off of the bed. I have never dropped one of the kids. I've never fallen asleep with the on the open side of the bed. I felt AWFUL...I still do.

Just before Gracie fell asleep she sat up and asked me where her hair is. I told her it was on her head. She said "no this is my daddy's hair!". We told her that she looked more like Daddy after she woke up, to make her feel better about it. Oops. Guess that backfired. She now wants me to glue her hair back on her head. Hmmm...

Days go so fast!

Wow, it seems like it was just Wednesday and we were bring Gracie to the RMH. It's already Sunday, and after our visit to ophthalmology tomorrow, we will be heading back to Horseheads!! It is so exciting. I absolutely can NOT wait to sleep in my OWN bed, and for Gracie to get back to her bed and room.

The days since leaving the hospital have been busy and EXHAUSTING. We are really only getting started in this journey. At the hospital, there was always someone there, to answer a question, check her neurological status, even just play with her for a few minutes. No we are on our own and it IS hard, I won't lie. She has a myriad of challenges to overcome, and sometimes it does get overwhelming.

Her appointment with the neurosurgeon went well. He basically just looked her over and commented on how far she's come in 8 weeks. We will have to go back to him again in six months. Tomorrow, we have that dreaded ophthalmology appointment. The last time they saw her, they dilated her eyes. My poor girl was in agony. This was back when she was still completely unable to speak, so all she could do was hold her head and cry. It was extremely heartbreaking. I am hopeful the doctor will not need to do that again tomorrow, but he probably will. We have a few issues to discuss with this doctor as well. Bright lights and sunshine bother her immensely. She sometimes will not be able to see objects that are pretty much right in front of her. \There is also a chance that the nerves in her eyes were affected by the stroke. When she gets really tired, her gaze averts up and to the right. If it is a nerve problem, we will have to start doing eye exercises as well, LOL.

Tuesday, we have an appointment with her primary pediatrician. I am hopeful to be able to get some kind of answer on the potty issue. She is doing very well staying dry, so long as I make sure to take her every two hours. She doesn't seem to feel the muscles at all, she doesnt even know she's going unless she hears it. HMMM...MORE EXERCISES, maybe? Poor kid, she ought to be the most exercised child in history. Wednesday, someone will be coming to out house to setup all of her therapies. Please pray that they are able to give her what she needs and as often as she needs it. We do not want her to lose any of this ground that she has gained in the past 6 weeks.
Pictures later!

Last night at St. Mary's...

and it just all seems so bittersweet. It reminds me of the day that we took her home from the NICU, the second time. The first time she went home, I had this funny feeling-just that something wasn't right. It turned out she had an infection and ended up right back in the NICU again. The second time around was different. It felt...right, but a little bit sad as well.  John and I spent upwards of 18 hours a day with those nurses and doctors. It felt almost like we were moving away, and leaving our family behind. Three days after she came home, I can remember sitting on the couch crying. John walked in the door from work, took off his coat and shoes and immediately asked me what was wrong. Like an idiot, I looked up and said "I miss Beth and Lorianne and Kris." You have to really visualize this though. Here's the original germophobe, sitting on top of a dirty diaper, sobbing like a madwoman--- (which obviously means one thing...RUNNY NOSE) feeding Gracie! Then, when he tried to take her from me so I could get myself under control, what did I say? "No, go wash your hands first!"

So, we all find ourselves in the same position, almost exactly three years later. We are thrilled, excited, overjoyed to be going home. We are READY. And YES...we are sad. For the past 41 days, these people have become our family. They are Gracie's friends and her play people. They have LOVED her. No, not just loved having her around, or loved how funny she is, etc. They have taken OUR daughter into THEIR hearts and shown her TRUE love. They have been here for our best and most victorious moments, such as walking again, running down halls, eating and drinking real food.They have also helped ME through some of my worst. I will never forget Rita taking the time to pray with me, or Cheryl telling me about her experience with a family member's TBI. I will remember the times when I just needed someone to talk to and Katie or Mary or Patricia came in and just sat for a couple of minutes. Derrick picking on Grace to no end...and her very last night here, she got him back. How? "Marry me Derrick." SOO funny!! I'll miss "Davy-baby" as Gracie called her for so long. She always had a smile and hug for Grace, even after she threw up all over her the 1st night here. We will probably all miss Natalie and Katie the most. Natalie was just the type of person that everyone wants to know. Straightforward but sweet. Always busy, but never TOO busy. Katie became Gracie's best friend. She would walk her around all over, take her to do little things just to make her happy. She toilet papered our room one night and then we got her back by getting her with silly string. She's a live wire with a heart. We love them both.

One of the first things I noticed when I walked into St. Mary's was that there were pictures with quotes all over the walls. These are pictures of former patients and employees, all with glowing stories. ALL TRUE. This has got to be the friendliest hospital I have ever had the privilege to spend time at. From the ladies in the security window, the gift shop, cafeteria, and the nursing/doctor staff...these people are the BEST. I love them all, and we will miss them.

Of course this post would not be complete without 4 people who are now very special to us. Jessie, Sarah, Will, and Jessica. They were Gracie's therapist's, aka play people. From the moment we walked into this place, they engaged her and made her DESIRE to get better. Everyday we were here, we got to watch them as they helped people reclaim their lives. They treat people that the world often thinks are now worthless as PEOPLE, worthy of RESPECT.

I will end with some pictures...

Natalie and Grace

 

Shontae andNatalie

  

Gracie reading to Grandpa

 

"Eating" pizza at her going away party

 

Josiah is SO happy that sissy is coming back home!!

 

Derrick just told her she was showing too much leg.

 

Katie, Mahra, Derrick and Grace

 

Meg with Grace

 

and Katie...we will  miss you!

Life flights

Tonight, I was driving to Pizza Hut to pick up the pizza's for our little thank you party for the evening crew here, and a life flight helicopter flew overhead. I was stopped at a red light, so I just sat there and thought. I thought about the ladies that were on the helicopter with Gracie. I remember very little from the time Gracie got into the ICU on 11/16, but I do remember them. I remember the lady telling me that she had worked as a flight nurse for 17 years and that she would take care of my little girl. Then I remember her saying that she would pray with her and sing Jesus Loves Me to her on the way. I believe she did just that. I wish I knew their names so that I could thank them properly for getting her here safely, and for giving a very hysterical mommy just a little bit of peace.

Anyway, sitting at that red light, I decided to pray. I prayed for those ladies and all of the people who work on those life flights day in and day out. I prayed for the person on that helicopter, in a life threatening situation. I prayed for their family, maybe already in the waiting room pacing. Maybe racing up the highway, trying to get there. I prayed for the doctors and nurses, for wisdom and guidance.

So, if you live near a hospital, big or small...I want to challenge you. When you see an ambulance speeding towards the hospital, lights flashing and sirens blaring---take a moment to pray. If you see that impossible to miss life flight helicopter flying overhead, go to God for that person. I know...chances are slim that you actually know the person...but you just never know. Just 58 days ago, it was Gracie.

Oh, by the way, I'm very spacey these days (even more than normal). I'd probably still be sitting at that red light if not for the guy behind me laying on his horn!!

Neuropsych evaluation

Well, today I had to go sit down with the units neuropsychologist and do an interview/evaluation of Gracie. He asked me questions and I had to answer whether it was something she COULD and WOULD do RIGHT now. Not two months ago...but now. It was wonderful to think back to when she first got here and all the progress she had made. At the same time, it hurt. Way down , in the deepest part of me. The part that I have tried so HARD to bury, because I AM so thankful for every positive step she has taken.

It was one of the hardest things I have ever done, saying "no" to these kinds of questions: Does she walk unassisted? Can she run without falling? Jump up and down? Bend over and pick something up without losing her balance? Remember details of the day without prompting? By the time it was over, I felt like I had answered, "SHE USED TO." at least 200 times. Then came the really hard ones. These are the questions that are haunting me right now and causing the tears streaming down my face. Does she go to sleep happy? Wake up with a smile? Does she wake up frequently in the night? Does she cry in the night? Does she get scared very easily? Is she over attached? Does she have nightmares?

The past two days she has woken up very happy. It reminded me so much of before. This morning, she woke up and was turned toward the wall. She didn't even roll over to see me, she just said "I waked up, Mommy." We had a great start to the day, cuddling, getting her clothes out, and reading the Bible. Then I had to take her to the potty. The first problem with potty time is that she for some reason is still stuck on not using her own toilet. The second problem is that she CAN'T feel whether she has to go or not. So, she really does not want to sit on the potty. Much crying ensues. I sing "The Wheels on the Bus", trying to make her sing along. If that doesn't work, we move to the B-I-B-L-E. Usually by this time she has gone, and we can continue on our day. Next is breakfast...so we go to the dining room. Usually, she eats about two bites of her food and then wants a drink. A lot of times she chokes when she's still a bit tired, and then she no longer wants to eat. So, back to the room we go to clean her up. I hear "this is not my room. that is not my bed. that is not my sink." before we're anywhere near it. She does let me get her cleaned up though...and then it's time for Keppra and to get her blood pressure taken. Just as we finish all of that, thankfully a play person usually comes. I make our beds, get a cup of coffee, and sit down to read some more Bible. Josiah gets to the hospital and we start our routine. When Grace gets back, we have to keep her occupied EVERY minute or she will get hurt. Gone are the days of sitting her down with a dolly or toy and letting her play. I have been SO looking forward to getting home and back to church. Today I started to think about what church will be like. I won't be able to leave her for Sunday School or church, because she needs one on one. If I take her in her wheelchair, she'll be bored out of her mind and crying to get out. She would also be much higher in the air than the other kids and unable to reach the table. She can't have snacks anymore unless I am right there to watch her.

Tonight, she REALLY broke my heart. A little girl was here with her parents, visiting her grandma. She was almost 2, and Gracie wanted to play with her so badly. It was 9pm though, and the parents were ready to go home. Grace stood at the door and cried, "Don't go in the moving room, Bella. Don't go." She has tons of fun here, but she misses KIDS.

***I'm sorry if this comes across as complaining. I really don't mean to complain...I am SO thankful for how far she has come, and I know that every day is just going to get better. She amazes me every minute of every day. I just meant to tell of some of the big differences there still are from before to now.***

A walk down memory lane...

A few people have asked me to post some pictures of Gracie from birth on up. The pictures are somewhat limited here on my laptop, but I have rummaged around and found a few...

 John and Gracie, the 1st time he ever held her. She was almost three weeks old.

Mommy and Gracie, kangarooing.

 

 This is her wearing one of those teeny preemie outfits you see in stores. It was HUGE on her...at least 6 inches too big, all the way around.

Eating her first bottle, over 2 months old. About 3 1/2 pounds

Her first Christmas picture. 

 

Going home from the NICU after 126 days.

 

The night before her first shunt surgery, at the Ronald McDonald House. See how big her forehead was? The hydrocephalus was VERY bad at this point. ( See how big my nose is? What's my excuse? LOL)

Right after her 1st shunt surgery. Such a good girl!

Just some pictures!

This is right before bed. Notice how her eye is almost closed? The more tired she gets, the more it closes. By the time she actually falls asleep, she sometimes only has one eye opened.

This was after dinner last night. The man here is Rich, the one who fell of his roof. It's been a blessing to get to know some of these families here. Rich loves Gracie...they have fun together.

Another of Rich and Gracie. A friend gave her a little "pocketpurse" (that is an original Gracie word) with a teddy bear in it. Rich is checking it out. I know she must like him...she doesn't let that purse out of her sight!

Grace and Nancy. Grace REALLY like Nancy a lot. So do I. She always has a smile on her face, and sometimes that's just what you need.

Grace and Patricia. Patricia does activities here, on Monday, Wednesday, and Friday. She has been a lifesaver to me...she usually takes Gracie for about an hour at night and lets me eat dinner or just rest. She loves to play with her...and it's nice for me to have someone to talk to.

Going for a ride in the wagon. We will have to invest in a wagon this summer...my kids love riding in them!

Just to show how well her hair is growing in, albeit COMPLETELY uneven.

1/6/2010

Hi everyone! First of all, I really want to say thank you to everyone for reading about and praying for our Gracie. I will never be able to put into words how much it means to us.

The past few days I have been struggling with some guilt. I felt so terrible while she was in the PICU, for every time she annoyed me, or every time I raised my voice. Here we are, 6 weeks later...and she sometimes annoys me and I sometimes raise my voice. I keep thinking, "great way to be thankful, Michelle!" Today, I was driving to Wegmans with Josiah and listening to some good preaching. How many times have I heard these 2 verses? Probably 500! Today they took root though. Thanks God.

"Brethren, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, I press toward the mark for the prize of the high calling of God in Christ Jesus." Philippians 3:13-14

It hit me...like a ton of bricks. I was not a perfect mom before Gracie got sick, and I am not going to be a perfect mom now either!! She was not perfect before, and the stroke did not magically make her a sinless child. FAR FROM IT!!! It is still my job to discipline her, and yes sometimes I do get exasperated. The only thing I can do is to continue to press on. Feeling guilty is not going to help ANYONE in the long run, right?

Now, as for Grace, she is doing wonderfully! Tomorrow is the big day to get casted for her leg braces. Please pray she does well...she does not like any kind of procedure, so I am a bit nervous she might scream the whole time! Actually, change that prayer request...please pray for the poor person doing the fitting!

1/4/2010..

Grace has had a good day. She had a LOT of therapy time today and no nap. This evening she played the Wii with the activity director and she just loved it.

Jessy has put her back on normal liquids. Please continue to pray about her swallowing. She does very well, but sometimes she still takes too much and chokes. I am also concerned that she hasn't been drinking quite enough. About a week ago, the nurses started to put her Keppra in her juice. Since then, she hasn't wanted to drink as much. She's a very smart little girl and she knows something is in there. Her lips are getting dry again, which is always a sign that she's starting to dehydrate. So, please pray she'll drink more now that she gets regular liquids again! She will be having some blood work in the AM and that will tell us if everything is alright.

I am looking forward to Thursday, when she will be fitted for braces. I know they are going to help her a lot. On Monday, we SHOULD be getting a rental wheelchair. Things are moving ahead!!

Dear Grace,
I am sitting here, listening as you play across the hall. I can hear your laughter and the your little voice saying,
" Whatcha doin, Patricia?" In my mind, I can see you, sitting in your wheelchair, with a big smile on your face, the Wii controller in your hand. Next to you, I see Rich, a man who fell off a ladder a month ago and has been through a horrible ordeal. A man who half the time has no idea where he is and barely talks or smiles. I HEAR HIM LAUGH WITH YOU. I sneak over to the dining room and watch through the window. There you are, swinging the controller, NO idea what you are doing. Cracking up the whole time. There's Rich...trying to do the same thing, and laughing also. I see his wife...laughing as she tears up a little...so thrilled to see him having FUN. I know that I have been blessed.

Never let life get to you. It definitely gets hard. Sometimes, it seems like it is WAY more than you can bear. You are a step ahead of the game though. At 3 years old, you have already learned to smile no matter what. As I have said before, you smile through the storm. Always remember that there are others have it so much harder than we do. As you get older, take a look around. There are people everywhere that are hurting. Share your smile. Share your laugh. Share your LOVE.

Love God. Right now, we ask you "who loves Gracie?" and you always say "JESUS!!" first. Never forget that. No matter how much Daddy and I love you...Jesus loves you so much more. Make Him your first love and your best friend, and you can't lose.  Be kind. When a new girl comes into Sunday School class, be the one who moves to sit next to her. Be her friend. Remember, someday you WILL be the new girl. Be thankful. The Bible says "in EVERYTHING give thanks." Learn to live a thankful life. Thank God for the sunshine AND the rain. Fall in love with God's Word, talk to Him EVERY day, and be a soul winner. He has given you an incredible testimony of His strength, His grace, His love and mercy. It would be a shame for you to keep that to yourself. Tell people everyday about Jesus. A simple smile and "Jesus loves you" will do.

We love you, Grace. Keep smiling.
Mommy

January 13th...

is our official discharge date! Gracie will be fitted for leg braces on the 7th and then we will start to talk about other equipment that she will need at home. We might not get home until about a week after the discharge date, because she will need to stay here for neurosurgery, neurology, ophthalmology, and orthopedic appointments.

We have had an exciting New Year's so far, with lots of visitors and some trips away from the hospital. She is doing SO well, but she does still tire easily.