Wednesday, December 30, 2009

Promised update...

Hi all. So sorry I didn't update on Grace last night. I couldn't get her to go to sleep so I decided to lay down with her. Well...when I woke up 3 hours later I was just too tired to type, LOL.

Grace has been doing GREAT! Back when we were at Strong (was that really at the beginning of this month? It feels like last year!)the doctors told us to expect at least 6 months of ACUTE rehabilitation and years of outpatient. At least 6 months...well we have tentatively been told that we should be going home sometime in January! She will definitely need to have a lot of outpatient rehabilitation and physical therapy...but AT HOME.

***Grace has definitely gotten her voice back 100% and her personality is almost normal. She's learning a lot in her speech therapy and doing well with socialization. She does have some behavioral issues we are working through. The neuro-psychologist here and I were talking yesterday about this, and he thinks she'll do better when she is at home. One of the side effects of stroke is inhibition, and she does show that. If she doesn't like something, she has no problem saying so. She also has a much harder time settling herself down when she gets upset than she used to.
***She has been eating a normal diet for almost a week now, and doing very well. I still have to remind her to go slow and chew the food really good. Sometimes I think that it's more for my sake though than hers.She does still drink the thickened liquids, because she still chokes a bit on the regular. We are praying that she will be able to get to thinner liquids before we go home.
*** She loves her therapy, AKA playtime with her "play people". I'm wondering what we're going to do when we get home and she realizes that Jessy, Sarah, Will, and Jessica all stayed here. She absolutely ADORES them!! Yesterday I walked into one of her OT sessions. She was with a different person than normal and I just wanted to check on her. Well, there she was, using her RIGHT hand (the one that the doctors said would probably never work again) to THROW rings around a ring toss. She even made three or four! That's HUGE...hand eye coordination, fine motor skills, large motor skills, and CONCENTRATION are all required.

For the biggest and best part of this update, I wanted to let the following video do the talking...

and Gracie do the WALKING!!

Tuesday, December 29, 2009

In every thing give thanks...

I have no idea where to even start with this post. Today, I was driving down the road, thinking about the past 2 months. The emotion got the best of me, and I had to pull over for a few minutes and just thank God. I wanted to take a few minutes now and just thank some people. God has been so good to us through all of this, giving us people at every turn to help us.

1. My mom and dad. Though we don't always see eye to eye on things, (or hear ear to ear in the case of my Dad, LOL) the past 2 months would have been nearly impossible without their help. They have been here from Day 1 and we are very thankful for that.

2. My church family and friends. Our Pastor. I often joke that every time he answers his phone, KNOWING that it's me, God adds another room to his mansion. Seriously though. That day, sitting in the ICU, Pastor walked in and took over. He made the necessary phone calls, got us a ride to Rochester, and found us a place to stay. He calmed me down and prayed with us. He kept in contact with us through those horrible first days, though he and his family were visiting his daughter in Florida for the first time. Much more importantly than all that, he has been the one to guide us and help shape our faith. Had it not been for Jesus being here every step of the way, I do NOT know how we would have dealt with this. Had it not been for our Pastor, chances are slim that we would be saved today. We thank God for our Pastor and his family and their willingness to serve God.
We attend Lighthouse Baptist Church in Horseheads. Until last summer, LBC did not exist. We are the product of a merger between 2 churches, one that was overflowing and one that was slowly dwindling. The love that has been shown to us from members of the church we originally came from is overwhelming. The love that has been shown to us from the church we merged with is nothing short of amazing. Most of these people barely even know us, but have been praying faithfully, sending cards and gifts, making phone calls. I am so thankful for a group of people who allow God to work through them.

3. Tammy, Amanda, Brenda, Joy, Jane, Alicia, Jaime, Carolyn, Melissa, and Sue. I have never been one to need many friends... but I sure do have some of the BEST. There is something to be said about silent strength. Though we have not talked every day, or sometimes for weeks...just when I need it most, a little word of encouragement comes. It means more than you can know.

4. And now for the big one. The one that brings me to tears. The people whom I really don't know.
**Heidi, whom I have met twice at my grandpa's church in FLORIDA. She has followed Gracie, PRAYED for Gracie, and gotten others to pray for her. She has sent us cards and gifts and just LOVED us and our little girl.
**People that have been following the blog and have sent us cards and even gifts, just to tell us that they love us.
**The lady from the gift shop here at St. Mary's. She brought gifts for the kids on Christmas Eve, because she said she knew what it was like.
**Just this afternoon, a lady and I were talking in line at Target. She was buying Christmas decorations for a neighbor who lost his wife this year. He didn't decorate this year and she wanted him to have stuff for next year. I was telling her how I was sure he would love it, and about Grace and all that people have done for us and how much we have appreciated it. She told me that "27 years ago she had accepted Jesus as her Lord and Master and has tried to let Him be the Ruler of her life since." I told her I was a Christian as well and she said she had thought so. The she paid for my bill. My diapers and wipes, shoes for Gracie...over $70 worth of items. I cried and she hugged me and said "Isn't it amazing that God gave you Grace?"
Yes...yes it is. So thank You, Jesus, for EVERYthing.

Sunday, December 27, 2009

A little late but...

Christmas was WONDERFUL!!!Gracie was able to get out of the hospital for the entire day (from 10am-8pm) and go over to the Ronald McDonald House. She really enjoyed herself, opening presents and eating the yummy foods. By the way, she is eating normal food again, with no real problems. She is still drinking the thickened liquids however, because she still chokes sometimes on the thinner stuff.

We got a TON of presents. Thank you so much to EVERYONE who sent us a card, a picture, or a gift. Gracie had great fun opening everything...her favorites are her Get Well Baby and her Baby Cinderella. The Get Well baby (she doesn't have a name yet) came with a stethoscope, thermometer, medicine, etc. She loves to listen to her heart beat and change her diaper. It is so cute...she'll put the stethoscope on and say "Ba- bum, ba-bum". It's made things a little bit easier with procedures, but not completely. She is deathly afraid of gloves...she cries and shakes and says "no, don't put on the gloves!" as soon as she sees them. My sweet girl...she associates them with having her blood drawn and taking nasty medicine.

While we were at the RMH she played with a little boy named Joshua quite a bit. Joshua is 7 years old and has a myriad of health issues, including mild mental retardation. He is in a wheelchair also, and she would try to chase him around the house. He goes pretty quickly...I am seeing a future of chasing her around A LOT!

Christmas evening, a family from our home church, the Rodrigues' stopped in. They were on the way to his mothers house, and thought of us. It really changed the whole day for me. As nice as it was to have her out of the hospital, it was still hard not to be at home. I tried really hard not to be, but I was still a bit down. She lit up like the Christmas tree when she saw the family. The 2nd youngest, Tessie is in Gracie's Sunday School class. Grace was THRILLED to see her. I have not seen so many smiles from her since before the stroke. Jill and the kids sang some Christmas carols, which made all of the other House residents really happy. They did a great job, coming in impromptu and singing for us.

Here are a few pictures from the past few days. One thing I HAVE noticed is that Gracie doesn't like to have her picture taken like she used to. She used to start smiling and saying cheese well before the camera was out of it's case. Now I have to coax her just to look at me.

Monday, December 21, 2009


Someone asked me to try and explain how it feels to us to have a child who has had a stroke, who's entire life course has changed in the blink of an eye. I thought and thought and thought...trying to figure out how to express it in words. If I could sit in front of you and you could see the gamut of emotions, you would definitely understand. Then I remembered the poem, Welcome to Holland. I will copy it here...and then explain my feelings.

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

Holland became our home three years ago when Gracie was born. We had never been here before...for crying out loud, we didn't even know what language was spoken here! We learned though. Months and months were spent learning what might as well have been Dutch, with such terms as bilateral grade 4 brain bleeds, intraventricular hemorrhaging, hydrocephalus. We learned about bradycardia's and apnea, tachycardia and Lasix. Later we learned about PICC lines, infiltrates and E.coli. We graduated though, and started to find out all that Holland had to offer us. First smiles that were so sweet that we both cried. Hugs and kisses for mommy and polar bear kisses for daddy. Physical therapy that included huge bouncy balls and giggles galore. And they were right...Holland has beautiful flowers, and farms, and country sides. Holland has apple picking and Christmas tree's just a tad different. Three years ago, we moved to Holland, and gradually we fell in love with it. Holland became our home.

Six weeks ago, we were forced to move. No notice was given to us. We weren't even told where we were moving to! We fell asleep in our beds in Holland, and we woke up in Germany. We were ANGRY and CONFUSED!! We wanted to go back to Holland. We didn't know where anything was, the traditions here are completely different. The worst part? All that time we spent learning Dutch was a we needed to learn German!! It just seemed unfair. So, for a few days, we moped. We cried and complained. Then, we decided to just get up and look around. We had thought Holland was horrible at first too...but it turned out to be wonderful. And guess what? Germany has castles and beautiful landscapes. Germany has incredible bridges and a rich heritage. Germany is NOT Holland...but it's not bad. SO we've decided to step up and learn a little German. To take in the view and just enjoy what we've been given. We're hopeful that Germany is just a pit stop...a vacation. We DESIRE to return to Holland...but if Germany is our new home...we will be fine. We will be more than fine...we will be blessed. God brought us here to Germany...and He will see us through.

And as a side note...I'd just like to praise Jesus for what He did for me! Eight years ago today, sitting at a cantata at The Clemens Center, He spoke to me, and I accepted His precious gift of salvation. I am so thankful to have Jesus as my very best friend.

Sunday, December 20, 2009


I really don't have much of an update on Gracie tonight. She is still doing well, just getting tired of being in a hospital. I always feel so bad when it's time for bed and she says "this is NOT my's the nurses room!". Before we know it, she'll be home though, and she's only 3. Chances are her good that her memories of St.Mary's will include the nurses who spoiled and LOVED her and all the play time with her "friends"(therapists).

I do have a prayer request, one that has been weighing very heavily on me for a few days now. There is a girl named Leigh here. She is 22 years old, and was in a car accident back in August. Her injuries are very serious...she does not move on her own, talk, or really communicate. Basically, she is in a type of wheelchair (it's cushioned and reclines) most of the time. Her parents are here as often as they can be, at least 3 or 4 hours a day, and all day on weekends. They are people who have lost all hope. When her dad talks about her, you see the love in his face...but the joy never gets to his eyes. He told me this morning that he wakes up every morning and for just a moment, thinks it must have been a bad dream. Then he he reminds himself that this is their NEW life and he goes to work or comes here. It is heartbreaking. I have been praying for the family for 2 weeks (when I first met them). There is really not much else I can do for them, but just pray. I let him know every day that I have been praying for her and for them. These people need Christ though. They NEED that hope that only he can bring. Please pray with me for their salvation. I don't feel comfortable sharing a last name here, but they are Leigh's parents. God already knows!

Saturday, December 19, 2009

Break day for mommy

Well, last night I finally had a major melt down. It's funny how they always happen at the oddest of times. Like when everything is actually going ok, and your daughter is sitting in her wheelchair, happily eating her dinner. Well, that's how it always is with me. The aides had the TV in the dining room on and I was laughing at something on there. Next thing I knew, Derrick was asking me if I was alright. At that point, I realized I was sitting there, crying hysterically. I mean SOBBING...and I honestly didn't remember when I stopped LAUGHING. So, Derrick watched Gracie and I went to her room to regain my composure. Which was almost impossible. One of the nurses, Rita came in to talk to me, and then she prayed with me, which calmed me down. I had some nice ice water and a cool compress and went back to the dining room to find Gracie completely done with dinner. I felt better...relieved...and strangely revived.

So, today, I took the day off. I went for a nice drive, and did a little Christmas shopping. There's a river or lake up here with some gorgeous Christmas decorations set up on boats. I realized that we haven't even gone out to look at Christmas decorations like we usually do. It's Josiah's 1st Christmas...but we didn't even get a tree. Just a little fiber optic one in the hospital room. Shouldn't this upset me? Shouldn't I feel bad, like he might be missing out on something? I don't...if anything I am somewhat THANKFUL. Thankful that although, yes, there will be gifts, this Christmas will be about so much more than pretty lights and trees. Thankful that my kids will learn to appreciate JESUS and His birth as the reason to celebrate every December. Thankful that I get to celebrate not only THE Savior's birth...but MY Savior's birth. What a joy it is to know Him...

I walked in from my day of refreshing to a huggy little girl, riding around the halls in her wheelchair. She had a great, light schedule day. Tonight, she wanted to walk Grandma out. I was a bit worried, because she was ready for bed, with no shoes or socks. Well, she walked all the way around the floor twice, laughing and saying good night to the nurses and residents. What a ham she is!!

She loves all the pics. My friends daughter sent her a picture and she take it down off the wall and takes it with her and tells "my Jeshoohkuh" everything she is doing. Her Sunday School teacher also sent her a picture of her whole family. Tonight, I was in brushing my teeth and I came out and saw her folding it all up. She had it up near her mouth, like she might try to eat it ( she still has a slight oral fixation, especially when she's tired), so I asked her what she was doing. She smiled at me and said "I'm trying to just get Mrs Philbrick a kiss night!"...she was trying to her the picture situated so she could only see her teacher!! So cute!

Friday, December 18, 2009

Walking with the walker

This is from the other day. She had so much fun with this!!

This afternoon, Gracie stood up from a seated position and tried to take some steps by herself. She is still WAY too unsteady to walk on her own, but it is so wonderful to try.

However, we are no closer to an answer to the low grade fever question than we were a week ago. Gracie started these low grade temperatures almost 2 weeks ago now. She had gotten a GI bug and ran a temp. along with nausea and vomiting. Well, the nausea and vomiting have been gone since 2 days later, but the temperature remains. So, today, Dr. Christina came in and cleaned her ears of all the build up from the surgery(she has been on ear drops to help)...I really hoped for an ear infection. I sounds terrible, but I'm just being honest. No ear infection though. Ears look great, as a matter of fact. So, I'm half glad, half disappointed. Then she checked her mouth, because at one point the nurses in the PICU thought they saw a cavity (which wouldn't be that shocking, being that she had NO oral care for 2 weeks!), but she didn't see any areas of redness. There is one tooth that looks like it might have a little cavity, but she's not a dentist so she can't be sure. She was looking for a mean looking, blazing red infection. Again, being the wonderful mom that I am...I was a little disappointed. I just want an answer.

I realize that it sounds silly. After everything that has happened, I am hung up on a temperature that I wouldn't even call the doctor for before. For that matter, I wouldn't have even known what it was...I would have never taken her temp unless she acted sick! See, the thing is, this isn't before. I can never go back to before. I have accepted that. I have accepted that this is our new normal. I accepted three years ago when she was born that OUR normal would never be the same as other people's. I have not accepted that I let her down though, and I will not do it again...

Wednesday, December 16, 2009

Lots of progress

I have been seeing a TON of progress in Gracie this week! I can't believe that it's Wednesday already, by the way. The days go fast around here. Here's a few of the improvements:
1. Her voice is getting stronger by the day. When she first got here, she spoke in a whisper...we had to get right down to her level to even hear her. Today, I really noticed that she's getting her voice back.
2. Though they haven't progressed her diet yet (she is still on mechanical soft) I am noticing that she is doing better with eating. Tonight she fed herself a full plate of macaroni and cheese, and I only had to slow her down and remind her to chew a couple of times.
3. She REALLY wants to walk, and desire is always half the battle! When she walks with her therapist or me, she always tries to get us to let go of her.

This morning,we sat in the dining room and tried to catch up a little bit on her Sunday School work. As she completes her assignments, we hang them in her room. Earlier, as we went to the potty, she looked up and said " Hi Elisha!" So cute!

Tonight, we decorated Christmas cookies and she tried to hand them out to other patients. Most of them can't eat them though, so she gave them to the nurses instead. She had a lot of fun though.

Things to pray for:
1. When she walks her right knee still goes backward a bit. Her physical therapist isn't too concerned yet, she said it might correct itself. Pray it does, please!
2. She still takes Keppra twice a day (an anti seizure drug). I am hopeful that they will wean her off of this, so we can see whether it is even necessary. If she IS having seizures, then by all means, she needs to stay on it. However, I hate to be putting drugs in her little body that she doesn't need.
3. Low grade fevers continue to be a conundrum! The Dr. has had me taking her temp three times a day, using the same thermometer. This way we can get a baseline temp for her...however, it's just all over the place. Obviously, the concern is infection, but there are NO other signs of that.

She loves the cards, thanks to everyone!

Tuesday, December 15, 2009


Sorry that I haven't updated the past couple of days...we have been battling a nasty bug around here.
Gracie is doing really big news. She is just continuing to progress, slowly but steadily. We are having some questions about low grade fevers she seems to keep having, but the doctors are on top of it. This is MOSTLY a picture post!

More later!

Saturday, December 12, 2009


Our address is:
Richards Family/201
c/o Ronald McDonald House
333 Westmoreland Dr.
Rochester, NY 14620

Thanks to all who have asked for it. She LOVES getting cards!!


Today is December 12. It has been one month today since all of this started happening with Grace. One LONG month. A month of second guessing myself, the doctors, the nurses, the medications. A month of worry and fear, and I probably have many more of these months to come. Last night, I was sitting here, feeling sorry for my baby girl, and in turn, myself. She woke up very confused as to where she was. She wanted her bed and her pillow and her Emily and James (her baby dolls). I kept reassuring her that everything was fine, I told her Amanda and Mary were taking care of her babies, and that her Cinderella blankets and pillow were keeping her bed warm. She finally fell to sleep and so did I.

I started to think about that little girl though...the one who's daddy is in Afghanistan and she's scared. You know, that little girl who doesn't even know how to say Afghanistan, but she knows it's a war? How does Mommy calm THOSE fears? I'm thinking of my cousins wife. We don't even know each other, but I know shes having a hard time. My cousin is deployed and she just found out that their little boy has heart problems.

I'm thinking of the family at the Ronald McDonald House who have been there for 8 months and have no end in sight. I'm thinking of Heather, the mom of Gracie's first roommate at Strong. Her daughter has some terrible diseases that cause immense pain and illness OFTEN. While she was in the hospital with her, she got fired for missing work. She's a single mom of 2 kids.

SO...this really isn't an update on Grace is it? Yeah, it is. It's an update on what my Grace has TAUGHT me. She's 3 years old and she SMILES through the storm. Last night, a woman stopped me with tears in her eyes and said "Gracie really made my husband's night. She let him read her Twas the Night Before Christmas." She always stops to give a bright smile to Joanne, a lady who is heading to a Nursing Home on Monday. She can't be more than 65...but she can't completely take care of herself and she has no one to take care of her. I am so glad that Gracie makes her feel loved!!

God is good. That's not just something I is something that I KNOW. It's something I trust. Smile at a stranger them through their struggle.

Have nothing to smile about?

Do you know Jesus?

There. I bet you're smiling.

Thursday, December 10, 2009


I guess some people have wondered what exactly happened to Grace and what is going on now. I try very hard to mention only the good news on here for the most part. See, I created this blog not ONLY to keep people up to date about Grace, but also to bring glory to God for all that He has done. So, while I touch on the "bad" stuff, I will not make it the majority of any post. So, in this one post I'd like to answer a few questions and then move on!! :) I like to keep it happy!

1. Did Grace have H1N1?
--We are not sure. When Grace was taken to the hospital by ambulance on 11/14, they tested for both flu strains. Both came back negative. A week later, we were told that her H1N1 had come back positive. They ran another test in the PICU, and it was negative. Shunt failure GENERALLY does not cause kids to quit breathing, so it does make sense in that regard.

2. Did Grace have a stroke?
--Yes. Grace had a MASSIVE stroke that effected every part of her brain, but effected the left side the worst. We have had CT scans and MRI's to come to this conclusion. She will have PERMANENT medical problems from this, but thankfully she has a young brain. Brains do NOT heal, but they do relearn and learn to make up for the damaged part.

3. Can Grace walk?
--No. She does try to stand up, but her muscles are still extremely weak. In order to take steps, she has to have one person holding her hips and the other holding her hands. She gets tired very easily, but she is VERY determined. I am sure she will walk again.just probably not for a while. Even when she does, she will still probably need a wheelchair as a backup.

4. Is Grace blind?
--Praise the Lord, no shes not!!! We have every reason to believe that she was blind or almost blind until last Friday. Her nerves in her eyes LOOKED fine, but she showed no response to any visual stimulation, except for bright lights directly in her eyes. It seemed her eyesight came back to her all at once. One minute she didn't know who it was when someone walked in the room without speaking, the next she was saying "Hi Mommy" or "Gamma"!

5. Is Grace mentally retarded?
--Short answer? NO. She has gotten back her memory and most of her speech, though she does need to be prompted and reminded many times. For example, when I sing the B-I-B-L-E, I have to say "what's it spell?" and THEN she'll say "BIBLE".
--Long answer? We have NO idea what the long term impact of this stroke might be! Her memory definitely might be worse than normal. Behavior might become a problem. At this point, she is very needy. She has a hard time when anyone leaves the room, and especially if she thinks you're upset with her.

6. How am I doing?
--That's a loaded question that COULD take until next year to answer. Sometimes, I'm sad. Sometimes angry. Sometimes hurt. Tired most of the time. It's hard to watch your child in pain. It's hard to see her not wanting to do the PT anymore, but having to be the meanie that tells her she has to. It's hard to hear her cry about her room, wanting her favorite food, to go to Sunday School. Watching your child move her arm and leg up and down repetitiously because she CANT stop it? It is miserable. Seeing the look in her eyes when she knows she SHOULD know someone's name/face, etc...but she doesn't? It is heartbreaking. For every one of those thing though, Ive been blessed one hundred fold. I am truly FINE. I'm more than fine. When it seems like I just can't take it anymore, I can RUN to Jesus. Jesus makes every trial in this life easier. He also makes you look outside yourself and see other people and the problems that they are going through.

Ok... back to regularly scheduled programming!!

Gracie had a good day. She was tired out from all of the therapy and took 2 naps. She is now eating the mechanical soft diet for all meals. She filled up on breakfast, lunch and cereal she wasn't too hungry for dinner. Of course, I worried...then I remembered...SHE IS 3!! She has gone potty on the potty three times today. I still have to ask her most of the time, but like I said her muscles are VERY weak. It's good that she even has the desire. Her speech is getting better by the day. You know that saying "a child should be seen and not heard"? Well, that is Grace right now. Her voice is very quite because she doesn't have the breath yet to put any oomph behind it. Jess is working with her on that, with fun exercises, like blowing bubbles. She has started to initiate conversation a little more, but still mostly only talks when you ask her a question or have already started a conversation with her. More tomorrow!!

Wednesday, December 9, 2009

Cute little lady...

Well, Gracie's brain is starting to REALLY wake up. She has asked me about 1500 times today where her Uncle Pommy and Georgie are. (By the way Tom...the other day we were trying to get her to remember Princess's name and we reminded her that she always dumps her food. She remembered Princess...then said "makes Pommy mad" with that devilish glint in her eyes...too funny!!)

Her speech therapist let her try her FAVORITE food (beside cereal) today...macaroni and cheese!! What kid doesn't like mac and cheese? She ate it all with no problems. So, we are moving up on the nutrition, from pureed (think stage 1 baby food) to mechanical soft. She's doing very well, relearning to chew and swallow. She even got a piece of cheesecake with her lunch. She is still on the nectar thick liquids, but they are SLOWLY taking it back down to regular. Jess (speech therapist) allows her to drink regular milk and water when she is with her.

Right now she is in a hour and 1/2 block of PT/OT. It's funny. She cries when it's first time to go with Sarah (PT), then she has the time of her life. Then she cries when Will comes in(OT) then she has fun. Transitions are just very hard right now.

Thanks for the cards that have been coming! She loves to help open them and look at them. Get well cards go on the wall in her room and Christmas cards go on her door, for all to enjoy. The pictures are a GREAT tool, to help her remember faces and names. So far, she is doing good. She needs just a gentle reminder the first time she sees a face, then she can usually remember again for the next time.

Please continue to pray for the Nist family. Everyone here has been so touched by that is amazing. Their faith is strong but they will need a lot of grace to get through this.

Monday, December 7, 2009

I NEED cereal...

Is there a food that you just can't imagine living without? Well, for my Gracie, it is cereal. Ever since her appetite has been back, she has "need"ed cereal. It has been cute, yet heartbreaking. Three year old's don't understand that they had a tube down their throat and that their lung collapsed and that they had aspiration pneumonia. They don't understand that they HAVE to eat the yucky pureed food, because they are at a risk of aspirating food into their lungs.

They understand that they "need" cereal.

Today, Gracie's speech therapist decided to let her try. She got thickened milk and cheerio's and let them sit for about 10 minutes. Gross, right? Grace gobbled them up so fast they had to keep telling her to slow down!! She was so thrilled...she told Jess (her therapist) that she loved her!!

She has been doing well with her therapy. It is very tiring for her, and she doesn't really have the time in the schedule to take a good nap. This is her day:

7:30-8am Wake up, clean up, dress, Bible with Mommy
8-8:30am- breakfast
8:30-9- physical therapy
9-9:30- speech therapy
10-10:30- physical therapy
12:30-1-occupational therapy
1-2- NAP
2-2:30- speech therapy
2:30-3- physical therapy
3-3:30- occupational therapy
5-5:30- dinner

I'm tired just writing it out! She does well though, and in between she loves to play the piano and spend time with Josiah. Her spirit is great. I bought a little Christmas tree and she loves to show it off. She also wears a Santa hat, though she has no clue who he is. I could care less at this keeps her head warm!! Physical therapy is going good. She really likes all of the's amazing. The vast majority of people here are over age 50, but you would think the staff was trained for pediatrics. They can just engage her so quickly and easily!! Today, she walked with assistance across the room to my mom. She also got up on her hands and knees from her tummy again...she is trying SO hard. God is good!!

***There is a family at RMH right now with a 4 year old child who has neurological symptoms...but they can't find a cause. She has started wetting again after being trained, she can barely walk ( walks like she's drunk basically), her speech is very unclear and her thoughts don't quite make sense. I can't imagine what it must feel like to know your child is sick, but not able to figure out what it is. Please pray for them and her. ***

Saturday, December 5, 2009

Friday, December 4, 2009

Now at St. Mary's Traumatic Brain Injury Rehab Center

Wow. As of last night, we thought it would be at least Monday before we were transferred to St. Mary's. The staff was worried that Grace wasn't taking enough by mouth to sustain her, and wanted to wait to make sure that she would continue to eat as well as she has been. Fast forward to this morning. I was at RMH with Josiah and my mom called me to tell me the little girl in the room with us was now vomiting. That, of course, made me very nervous. She said the neurologist that was rounding right then was going to get on the phone and try to get Grace in to St. Mary's today. Next thing I knew, it was settled, transport had been called, and it was time to pack. Grace was strapped into a stretcher and put on a medical transport van. She HATED it...she was really scared. There isn't a seat in the back and it was against the law for me to sit on the floor (usually mom just sits up front--- but the child is usually older), so the driver had a great idea. He got a wheelchair, put me in it, and strapped me in next to her. What a guy...I could tell he's a daddy! So, we got here safely and got into her room. It is MUCH nicer than I expected. It's not in a great part of town, but it's a locked facility. Grace is the youngest patient here right now, but there is another little girl. She's probably 8 or 9...she is so sweet. I think we met basically the whole staff today, and I didn't meet a single person who wasn't genuinely NICE. She will be having physical therapy, speech therapy, and occupational therapy EVERY DAY for an hour each. She LOVED the would thing they ALWAYS worked with kids.
They even allowed Josiah in, even though they have the under 18 rule. The nurse manager said she couldn't see having them apart for so long, so long as he doesn't get any illnesses.
Grace's vision is getting stronger!! She still has a hard time when she's tired, but she did very well tracking things and grabbing for the therapist. She also will name things ( like the balloon) that there was no way she can just "sense". It's amazing...just yesterday, I was asking for a definitive answer.

Here are a couple of pictures from today. I will post a video also in a few minutes.

Thursday, December 3, 2009

Busy days!

Wow, Gracie has had a fun couple of days! Yesterday, I found out that she was able to go off the unit in the little car. Well, the wheels in my head started turning immediately.I brought Josiah over to the lobby to see her. It was just the sweetest thing ever. The looks on their faces said a million words. Grace put both arms up to hold him. Then when she felt him in her arms, she was just sniffing his hair and putting her face right down into his neck.

They aren't the best pictures in the world, but wow were they ever happy to see each other. Grace did have a hard time sleeping last night, but that had more to do with the noise in the room than anything else. Ugh.

Today, she got a visit by my friend Alicia and her little people, Aries, Alura, Avianna and Ashlee. Again, we brought her downstairs to see them, and she did good. To have the heart of a child...they were so concerned about her boo boo on her head, but they acted like she was just the same Gracie.

She has been eating very well and really trying to say lots of words and remember things. She does get confused sometimes...and then she gets upset. She's very strong willed though, and she'll keep working until she gets whatever it is! We thought we were going to move to St. Mary's tomorrow, but it looks like it might be Monday. I guess they want her to be eating even more...which I'm not so sure about. She's been eating three GOOD meals a day, plus high calorie shakes for snack! We will see in the morning though.

The most important news of the day: Alicia and the kids brought Gracie a balloon. I brought it in the room, very carefully not to make any noise. I put it right in front of her eyes and asked her what mommy had. She didn't know. I moved it from side to side...she didn't know. Then we tied it to the bed, above and a bit away from her...and she said "my balloon." My balloon. Such simple words...such huge meaning. Her sight is not perfect, but she does have sight!!

God is good!!

Wednesday, December 2, 2009

The little things...

Today I was on my way out of the hospital to go spend some time with Josiah when I realized I had left my purse upstairs in Grace's room. I jumped back on the elevator to go back up, and a gentleman in full dress blues with a huge smile on his face stepped on. I've never been one to ignore people just because we're in an elevator (never quite got that, do we turn into mutes in small spaces?), so I was getting ready to say hi. He didn't give me the chance...he was so excited he had to tell me his story. Basically, he is in the Army and has been deployed for over 2 years ( with 2 weeks leave for a death in the family this summer). His unit was scheduled to come home at the beginning of next month, but plans got changed and they got sent home early. He decided to surprise his wife and didn't tell her at all. They got home last week and had to go through some "rig amoral" (his words, LOL), and then he went straight home, where he found out his wife was in labor for their first child. That smile was because he had never thought he'd be home to see child born. It was so heart warming!! He was getting out, and I said "woo, God is good." He turned around and said "Yeah, I guess He is." It made my day...but of course He knew it would!

Some more pictures

What a great day!! We went for  a walk in the little buggy and "saw" the playdeck. A dog named Dar came and licked her and made her laugh...and then she talked to Grandpa and Josiah on the phone!! The picture of her on the phone really does say a thousand words...

She still can't hold her head up completely, but she is trying.

See that sparkle in her eyes? She sure does love her Bampa!!

Please ignore my BEAUTIFUL voice on here, LOL...I wasn't thinking about the fact that I was being recorded too! I was so shocked when she remembered part of one of her memory verses. Yesterday was SUCH a good day. We went through lots of names and she remembered most everyone. Some people got huge reactions. My mom's best friend Sue got the first giggle I've heard. We talked about Miss Joy (one of her church hour teachers) and she said "Oh, I love her." She's said her Sunday School teachers name (it's not simple)and asked where Pastor went. That one gets me, because he was one of the last people that saw her when she was in a coma. He came in and prayed with us... I wonder WHAT she remembers?

she's starting to play with some things a little. In some ways, she's reverted a bit. We gave her play dough and it went straight to her mouth. She does the same with her feeding tube. She might just not be able to see well enough to figure out what it is and that's an easy way to figure it out. Time will tell!

Tuesday, December 1, 2009

December 1st...

I can't believe it's December 1 already! Today was a good day for Gracie. When she first woke up and I said "good morning", she said it back. Then she told me "I waked up" and that she missed me. SO sweet!  The occupational therapist came in and brought her a high chair to sit in. She ate breakfast and a snack like a pro for Grandma, sitting up in the chair. When I got back later, she wasn't quite as interested in her lunch...but she had already had quite a bit to eat. She sat in the chair and talked to me though. I was amazed at the things she can remember.

I'm sure that there is so much more to tell, but I am exhausted.

Oh, Peyton came through her surgery. They are VERY hopeful for a full recovery. Thanks for praying.

Some pictures

She's trying SOO hard!!

Monday, November 30, 2009

Getting down to business

This morning they brought Gracie breakfast of scrambled eggs and pancakes. Everything is pureed, almost like baby food, but it tastes like normal food. It makes her have more of a desire to eat. She has been talking A LOT more. This afternoon I was singing the B-I-B-L-E to her (again, it's her favorite!) and when we got to the part where you yell Bible she was silent. So I asked her what the B-I-B-L-E spells and she still didn't answer. I was a little disappointed, then she said "Mommy, Jesus." I asked her what about Jesus and she said "Jesus in mommy heart". My little girl might be having a hard time expressing herself, but she KNOWS. She knows. She's in there and she knows. Good is just not the word for what God has been to us. Wonderful, Excellent, Marvelous, Incredible, Magnificent!! Merciful, Loving, Kind, True... I could go on for days.

The ophthalmologists were in a little while ago. Her eyes look perfect, so we are playing the wait and see game. The stroke definitely affected her vision, but as her brain heals, her sight might heal as well. She definitely does react to light, which is a good sign.

She also had physical therapy today, and the therapist decided to try and stand her up. She did well. She is in NO way ready to stand on her own (she can't even hold her head up for very long), but she's trying. She also did the arm movements for Rolled Away for her ( as well as she can when the good arm has an IV board and the other doesn't move well). I could tell she was impressed...

The Nursing Assistant was just in a minute ago to do her vitals. Gracie counted to 10 with her!!

Sunday, November 29, 2009

Out of the PICU

Happy Day! Gracie has been moved from the PICU to a regular toddler floor.Tomorrow, we will be having another ophthalmology consult. I am convinced there must be some way they can tell us if she is completely blinded or not. I am also hopeful that St. Mary's will be back in so we can figure out whether they will take her. She is slowly eating more by mouth (still just pudding/yogurt) but more volume and more often, so she might be able to get rid of the NG tube soon.
She got a sweet little roomie tonight, a 4 year old girl. Poor baby has a lot going on...

Some people have been asking for specific prayer requests. Here are a few:
1. Answers about Gracie's vision. We are totally ok with whatever God has decided to do, but not knowing is hard. We need to start planning for the future now.
2. I've been getting a lot of information thrown at me, most recently about wheelchairs. She will need one for a while at least, and the prices are CRAZY!! I know God will provide, so pray for me not to worry about it.
3. I feel I had lost sight of the great gift God had given me with the incredible testimony of Gracie's birth. I have been able to share Jesus with a few people since her illness. Pray for me to be bold for Him.
4. A little girl named Peyton. She is the surviving identical twin of one of the families at the RMH. Tomorrow, she will have very a dangerous surgery for necrotizing enterocolitis.

Some talking

Gracie has been trying to talk more the past couple of days. She has said "hi, Mommy, Josiah, George, amen, and Elliana." Last night, I walked in and she was laying down. I knew she had heard me, so I said "Hi Gracie, Mommy has to wash her hands." I heard "Hiiiii", in a very sing song voice...and it was her. This morning she talked to my mom quite a bit. She also said hi to a nurse today, the first time she has spoken to anyone but one of us. Hopefully, now they won't think we're crazy!

My dad got to go in and see her yesterday. It was very hard for him, but she tried to respond to him. She is TRYING to smile in the picture. My beautiful girl...she REALLY needs her hair evened out on the right side!!

Thursday, November 26, 2009

Happy Thanksgiving!

Wow, it's already been a week since Gracie had her surgery. We have SO much to be thankful for!! Gracie is doing so much better than she was, even just yesterday. I am going to try and go to the RMH for dinner at 3pm, a hotel called the Strathallan is coming to cater dinner. I am sure it will be great.

Back from dinner...I got a ride to the House in a huge Hummer limo! Dinner was great, albeit different. It's Josiah's first Thanksgiving and he loved it all, especially the pumpkin pie!!

Wednesday, November 25, 2009

Awake -vs- conscious

I have been using the word awake to describe Gracie's state. I am now realizing that this does not give a good enough description. Gracie is intermittently conscious. She is still not completely aware. She opens her eyes, briefly, but she does not focus. Chances are good that she has been at least partially blinded. She has been doing big cat like stretches today, and she moves her left arm and leg often. This is not normal movement though, it is all neurological. She can't get comfortable, so she moves all over. Imagine if you had a leg cramp and you were dancing all over trying to get rid of it, kicking your leg, bending and stretching it. Those are the types of movement we see from Grace. It's MOVEMENT though, and that is what counts at this point.

Tuesday, November 24, 2009


Grace got the tube out at about 1pm. So far she is doing great on a nasal cannula. Please continue to pray for her, that she's ready to breathe on her own. I worried about this so much, because the intubation is what caused her lung to collapse. If she can't handle breathing for herself, then they will have to re-intubate her and risk doing more damage.
The nurse just came in and washed Gracie up and brushed her teeth (which she hated). Now she smells like my little lady again. She tolerated it very well, and then stayed awake while I read to her from the Bible and sang some of her favorite songs. I think it's the longest she's been awake in 10 days. It's amazing...she gets very agitated and starts to flail around a lot. I sit down next to her and read to her from the Bible and she calms right down. God's Word is powerful!!

Monday, November 23, 2009

Quite a bit going on today!!

So, today was the last day at the hotel. Praise the Lord, we were able to get into the Ronald McDonald House. For any of you who have never had any experience with RMH...let me just give you a run down. They give you a place to sleep, a crib for the baby, a chair to rock him, internet access, shuttles to and from the hospital, television to watch, books to read, washer and dryers. You come home from a long day at the hospital and dinner is ready and it's ALWAYS good. You have a place to store food, a high chair to feed a baby normally, comfy couches to relax on. They ask how the day was...they learn your child's name and diagnosis. They LOVE you. They SUPPORT you. I'm not big on McDonald's food... but I absolutely love the House!!

The respiratory therapy started today. I can barely stand to be in the room. The nurses take the part that they usually put over the mouth when giving oxygen, and they thump her little chest with it. They call it cupping. She's all red when it's done, but it seems to really help, and that IS what is important. She also had physical therapy in today. She will be coming to work those limbs so hopefully, my girl will walk again someday.

Big plans for tomorrow...they want to try and extubate her!!

Sunday, November 22, 2009

Stroke damage

The MRI has come back. The stroke damaged the left side of her brain, the occipital and posterior temporal lobes. The left side of the brain controls the right side of the body, which explains the tenseness in her right extremities. There is a good chance she will end up paralyzed on the right side. The occipital lobe is responsible for sight. I have been wondering about blindness for a few days. We will not know anything until she can talk more though, and she will probably not be able to speak for a while. Usually, speech is very affected by a stroke. We will see when the tube comes out of her throat. She does perform VERY simple commands, though it takes a little time. I asked her to stick her tongue out at me. It was somewhat humorous...I could see her trying to do it. Really thinking about it...then she stuck it out and looked so proud. It all took about a minute. She's our little fighter!

Saturday, November 21, 2009

MRI day

Well, Grace will be having an MRI today. She has to lay completely still for the entire thing, so the nurse told me she might have to give her a paralytic. That really...I don't know how to explain it. It doesn't scare's just so UNNATURAL. I thought that the MRI was to check the, it's to verify the stroke. HUH? It's been verified by every doctor and nurse that comes in the room.

When she woke up earlier, it looked like she was trying to say "Mommy, I love you." The nurse saw it too...she was very excited for us. I know my little princess is just waiting to talk to me. It might be a long road back...but we still know a God of miracles.

Friday, November 20, 2009

Sleeping peacefully...

Today has been a very hard day to be here. My poor girl is trying SO hard to wake up and stay awake, but she's in pain, so the doctors keep upping the sedation and giving her Ativan. It is incredibly hard to sit next to her, knowing she is in pain, and not even try to help her. She did have another CT scan today, and it looked better. There wasn't a whole lot of change from the last one though, because the external shunt was doing the job of the one that failed.

I think I drive the nurses here crazy. I just have a lot of questions and I want them to be answered. Gracie is getting the PediaSure again, which is good. The next thing to do is to get her off of the ventilator. Once she's able to breathe on her own (or at least just with a nasal cannula), they can move on to restoration.

I can't wait to hear her little voice again. Every morning she would sit up in bed and say "Mommy, I waked up. Waked up, Josiah!" The last thing she really said to me was "that your blueberry coffee, Mommy?" Oh, to hear those words.

Thursday, November 19, 2009

Surgery is done

The OR called at 6:45 to tell Gracie's nurse she was to be there in 15 minutes. (Her nurse looks like Dora the Explorer by the way) They are supposed to give them at LEAST an hour to prepare...and 7 is shift change. AHHH...what a way to head to surgery, with a stressed nurse. She handled it VERY well though, she's a very sweet girl.

We went to tell Dad and Amanda that she was going in then paced the waiting room. It was only about an hour and 15 minutes when Dr. Silberstein came up. The revision went well, but the stroke did affect quite a bit of her left lobe of her brain. There is a good chance she will be blind, and possibly paralyzed on her right side.

Oh...and she's bald on top!! Still gorgeous though!

Long night...

Gracie CO2 crept up last night. Thankfully, she has what is called a blood gas every hour because she is on a ventilator, and the nurses caught it before it was dangerous. Basically, our bodies are meant to excrete the carbon dioxide we breathe in, but sometimes have a hard time when air is being forced through the vent. They have changed her vent settings just a little and will keep a close eye on her gasses through the day. Her magnesium levels have also dropped, so she is getting that in her IV as well.

Dr. Silberstein was in just a few minutes ago and said he was going to try and get her on the schedule today for the surgery to revise/replace her shunt. Whoa, nervous mommy!! We thought we had until Monday, at the least!! He told me that the external shunt that Dr. Kung placed has done it's job well, but that since it is external, it's VERY susceptible to infection. This is why he wants to get her in ASAP. So, we'll see...if the OR remains open between 4 and 6 pm, it's hers. I will keep you posted!! Thank for the prayers.

Wednesday, November 18, 2009

Central line is in!

The central line is in and they have also placed an NG tube so that she can have some PediaSure to "eat".

Jesus Never Fails

Gracie is sleeping, which is exactly what she needs to be doing. I am so thankful that I have my God right here beside me right now...and ALWAYS. People wonder about faith...try Him out. He is tested and True...Jesus NEVER fails. My baby girl believes this. Her favorite songs are the BIBLE and Rolled Away. She loves to pray. Ask her why we love Jesus..."cause He loves Gracie." And He loves me and He loves YOU.
I've been singing this song a lot.
Jesus Never Fails
So many souls have tested Him throughout the course of time.
So many still reach out to Him with broken hearts and minds.
And every one of them will say,
Without exception that they find…
Jesus never fails...

Even in the days of old, He brought His people through.
And then He came to show His love and died for me and you.
Then He rose again to prove,
That every story has been true…
Jesus never fails…

Jesus never fails. Jesus never fails.
You might as well get thee behind me, Satan
You cannot prevail, because Jesus never fails.

Sometimes this world brings trouble I find so hard to bear.
I know I could not make it without Jesus being there.
It’s so encouraging to know,
How ever deep we’re in despair…
Jesus never fails.

So what can I do to prove to you, tell me how can you deny?
No untold facts, no mysteries, it’s all so cut and dried.
On the witness stand of your life,
I’ll be the first to testify…
Jesus never fails!

You might as well get thee behind me, Satan
You cannot prevail, because Jesus never fails.
Never fails…

Central lines and pneumonia

Today, the doctors will be attempting to place a central line in Gracie ( This type of catheter is inserted into a vein at one location (neck, chest or groin), and tunneled under the skin to a separate exit site, where it emerges from underneath the skin. It is held in place by a Dacron cuff, just underneath the skin at the exit site. The exit site is typically located in the chest, making the access ports less visible than if they were to directly protrude from the neck. Passing the catheter under the skin helps to prevent infection and provides stability.) She will have to be sedated even MORE than she already is, and it could be up to a 2 hour procedure. Wow. I can't help but remember the PICC line in the NICU. I still shudder when I think of what might have happened had Kris not noticed the small changes. Now, the old "bullet hole" is just one of many NICU wounds, and they tell a story of amazing resilience, strength, and of course GRACE.
 She does have aspiration pneumonia and a collapsed lung. Her lung probably collapsed when they intubated her in Elmira, but there was no other choice. I was told they would start respiratory therapy with her today or tomorrow, to help get the nasties out. She gives us GOOD caughs and cries when she coughs though....good signs!
Gracie is lying on a cooking blanket. When we got here, she actually needed it to bring her temperature down, it was lingering between 105 and 106 for quite a while. Now, they are keeping her "on the cool side" about 96-97, because the brain heals better at cooler temps.

Tuesday, November 17, 2009

Starting to get some answers...

Well, it looks like Grace definitely had a stroke. According to the CT scans done here. It's so strange here sometimes...they have her on this drug called  Remifentanil. It is a drug to sedate her, but she comes off of it quicker than others. When she gets agitated, the nurses come in and give her Ativan. Then they'll come in 10 minutes later to do a neuro check and say " Grace, open your eyes." over and over. Hello!! You just sedated the child!! Then they go outside and talk about how she looks from a neurological standpoint. In any other situation, I might find it humorous. I realize that they are just doing their IS what she needs.

I miss my girly-bug. That's the reason for the butterflies on the page...when she was in the NICU we called her flutterbug, because she fluttered up and down in her stats. She graduated to girly-bug and that's been my favorite nickname for her ever since. I can't believe just the other night, she waited up for me to get home from my birthday party. She accidentally squirted lotion all over my brand new shirt...then laughed because it smelled pretty. We played with balloons and caught up on our day... she was SO excited to eat my birthday cake the next day.
"What time I am afraid, I will trust in thee.  In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me."

Monday, November 16, 2009

I wish I was wrong...

Unfortunately, I was not. The doctor came in this morning and saw Grace. I told her right off the bat that I did not think Grace had the flu, or that if she did, it was not the only thing going on. I was ALMOST sure this was a shunt problem. She checked her over and said she would contact Dr. Silberstein when she got to the office. I said no. We needed to get something done right then. So, she contacted him, and he told her to do a CT of the shunt. On the way there, she was completely limp, and her eyes rolled back into her head again and she stiffened all up. I said "Does that look like the flu to YOU?" to the doctor. She didn't answer me. They got her out of CT and on the way back up, I knew she was having trouble one else seemed to notice. We got back to the room and she had to be bagged because she wasn't breathing. Finally, people started to LISTEN and move. Before I knew it we were on our way to the ICU and then the scan was coming back that she had shunt blockage and failure. She would need to be life flighted to Rochester in the helicopter once they stabilized her. She was intubated and put on a ventilator. I never thought I would see her like this again. I was very faint and I almost passed out, so they made me sit in a wheelchair. They took us into a room in the ICU to start making arrangements to get to Strong. Our Pastor walked in and he took over, thank God. I was not even able to think straight, but he helped us get everything ready. Someone from the Childrens Miracle Network came in and gave me some money to help us get there. We thought we were getting ready to leave when Dr. Kung walked in. He's the only local neurosurgeon we have, but he doesn't usually do pediatric cases. Dr. Silberstein had him pulled out of emergency surgery to come and consult on Grace. He found HIGH intercranial pressure from the shunt failure and had to QUICKLY do a procedure in order to relieve some of it. So, she has a hole in the front middle of her skull, with an exterior shunt. Her head had to be partially shaved. At this point, they were ready to get her out of there. Nobody was able to fly with her because of the weight of the vent. Pastor wanted to, bless him...I am terrified of flying. A friend from church, Carolyn came to the hospital and drove us to Rochester. She got us there in record time. When we got there, they didn't let us in right away, but did tell us she was doing OK. Only 2 people are allowed in to the PICU for her ENTIRE stay...and Josiah is not allowed in the hospital at ALL because of H1N1. It's all for protection purposes, but it sure does make life more difficult.

What we know so far:
-She has probably had a stroke
-She has had total shunt failure
-Need to get her high temperature under control
-Will need to have a shunt revision once she is medically able

Thank you for your prayers.

Something is wrong

 I really don't know what to do. All Grace can do is lay in the bed, hold her head, and scream. A deep, guttural scream. I'm honestly not sure that my baby girl even recognizes me. I have gone out to get the nurse about 15 times, and she still says that this normal for the flu. I'd like to believe that. The doctor should be in to round in a few minutes though...and if she doesn't take me seriously, we ARE walking out of here and going to Rochester.

Sunday, November 15, 2009

In the hospital

Well, we got up this morning and my girl just wasn't acting any better. So I took her to STP and we were admitted. She needs IV fluids...they think it's the flu or a virus. The more the day goes on though, the more my brain is screaming shunt. She's just not getting any better...and the nurses are NOT listening to me. I know she had a shunt series...I held her down for it. I also know that the techs didn't seem to have any idea whether it was a good scan or not. This is MY it too much to ask that they check her? If she starts having diarrhea and puking, I swear, I will eat humble pie and LOVE it.

Her shunt line is bright red and raised...the nurse says that it's not a sign of shunt problems...HMMM...that's not what Dr. Silberstein told us....

Saturday, November 14, 2009

November 14, 2009

I had to take Gracie to the ER by ambulance today. She hasn't been feeling well for a couple of days, nothing too big, just a little virus. Today, after we got up, she threw up her Tylenol and then completely stopped responding to me. She was just sitting there staring up into space, her eyes completely glassy. I knew right away she was having a seizure, even though she never actually had any rhythmic movement. She was completely unresponsive when the ambulance and police got there. I was so scared...I rode in the ambulance, and the man in the back was very rude. He somehow got the impression that I hit her head and she lost consciousness. Then he asked if this was her normal state, since she has hydrocephalus. UGH.It really bothers me when people make stupid assumptions. Anyway...we got her there and she had started to perk up. She DID have a high temp, so the doctor thinks it was a febrile seizure. He did a shunt series just in case, it came back fine. He checked for both flu, strep, did a urinalysis...everything came back ok. So, she had half a bag of IV fluids, and now we are home. She's acting somewhat normal...just very tired. We'll see how she is in the morning...I just don't feel right...
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