Thursday, February 25, 2010

Ophthalmology appointment

Well, we woke up this morning to quite a bit of snow on the ground and 2 doctors appointments scheduled. 8 am came and Josiah's doctor called. They were calling all the parents with well visits and canceling, if possible. I was perfectly content with that... I am not much on driving in the snow. I was bound and determined to make sure and get Grace to see the ophthalmologist though. Her appointment was at 2:30, but when I called to make sure that the office was open, the nurse asked if I could come in at 10:15. We decided to take the earlier appointment, warmed up the car, and off we went. Somehow in my rush, I even remembered to call her physical and occupational therapists and let them know that we had a change in plans. (Yes, I am patting myself on the back right now!)
We got to the doctors office (the roads were perfect, by the way) and I was immediately nervous. It was just me, Grace, and the little girl I babysit. I always get bad news when I am alone. Today is also the day (3 years ago now) that I found out my little Lily would have holoprocencephaly. I was alone that day as well, and so it was on my mind. Of course, today, I just didn't want to hear about surgeries or blindness. So, we were sitting in the waiting room and I took a New Testament out of my purse and decided to just flip it open and read a verse. I flipped to 2 Corinthians 1. There in verses 3 and 4 are the words:" 3. Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;
Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Iy was just what I needed...and of course God knew that.
We got back to the exam room and the whole experience started 100 times better than the last time we went to an eye doctor. Of course, we had already seen this doctor and I knew how gentle and patient he is. Gracie took to him right away and did very well. He had to dilate her eyes again, which she hated. The good news though, is that her optical nerve looks great!! He saw NO evidence of cupping, which is what we most concerned about. However, he is concerned about how her eyes are seemingly crossing. He did a bunch of tests and then told me that she is actually favoring her right eye...and barely even using the left. So, we came home with a box of eye patches. She is supposed to wear the patch every day for 2 hours. In a month, we will see how she is doing. She might need surgery down the road, but he will try every other avenue first. I appreciate that greatly.
Pictures of her wearing the patch to come!!

Wednesday, February 24, 2010

Well, we had to make the trip to Rochester again this weekend. I am always glad to get to stay at the RH and see the people who were there before. It's amazing to see all of the progress that can take place in under 6 weeks! Little NICU babies that were on vents and under 3 pounds are now getting ready to go home this week. One mother who's son has brain cancer was still there...but her son was there with her instead of in the hospital. However, there was a sad spirit in the house this time. See, the people at the Ronald McDonald House really become like a family...and this week we lost a member of that family. Remember this post?
Lee is the little boy who had been there for 8 months. His family and ours are actually from the same general area, about a 10 minute drive. Our families got close. Gracie and Lee were actually at the RMH together for about a week, and though he was too sick to get up and play, they got to know each other. He would always get a big smile when he saw her, and she often asked about him when we came home. "Where Little Lee goed?" she would say. Then last week we got the news that he wasn't doing well. Infection had set in to his immune suppressed little body and his kidneys had shut down. There was nothing left to do, so his mom and dad did the only thing they could. They brought him his house...his sisters and brother...his dog. In the last week they gave him every wish they possibly could, including a birthday party. Our family went to the party, and Gracie got to see little Lee one last time. He was in a coma, laying in his bed. It was quite obvious that he was in his last days on Earth. Gracie went to see him and said "Waked up, LeeLee..." but obviously he couldn't. I told her Lee was very sick and she said "no he just asleep." We whispered, "Jesus loves you" to him and then we had to let him rest. He was so peaceful...and Grace was so sweet. He passed away on Sunday morning. I am so sad, that at 3 years old, my baby girl has already said goodbye to a friend. I am so GLAD for God's grace. I can't be 100% sure ( nobody can)...but God has given us peace that Lee is in Heaven. What a day it must have been for him, to go to sleep in the same pain he had been in for over 3 years, his lips cracked and bleeding beyond anything I have ever seen...and to wake up, whole, painless, with JESUS. With Jesus. Sometimes, I just want to sit around for a whole day or two and thank God for Jesus!!

Gracie did have appointments this week in Rochester. She saw the rehab doctor at St. Mary's and they said she is doing fantastic! She has to go back to see them in 6 months. I wish I could have videotaped the reunion with her therapists and nurses. She was running all over, laughing and smiling, she kept asking "whatcha doing here?" like she thought they were all supposed to come home with her last month.

She has another ophthalmology appointment tomorrow. This one is right in Elmira, so it will be much easier for- me at least. Please pray that it goes well. Thanks everyone!!
With the kids I watch every day.
At Josiah's FIRST birthday. She loved that cake!!
The birthday boy!

Saturday, February 13, 2010

Monday, February 8, 2010

and a quick video...

Just to show how well she is walking and talking...she was being very silly here. UNTIL her brother took her chapstick that is!!

Hmmm...if anyone knows how to make the video look the right way, please let me know!

Just some pictures

This was right after she got home from St. Mary's...being silly.
Gracie, Grandma Denise and Josiah (hubby's mom)

Again, with a more normal look on Josiah..he hadn't seen his other Grandma in a while.

Tired after Sunday School...see all her necklaces? I asked her if she wanted ONE...she wore them all.

With Aunt Sam and her girl, Savinah. It was Savinah's 3rd birthday party. Sam is John's sister.

Playing with one of her in home therapists

Playing with her brother. She was trying to put "makeup" on him.

And another beautiful smile!!

Sunday, February 7, 2010

How old are you?

For some reason, in Gracie's mind she never turned 3. Whenever anyone asks her how old she is, she automatically says 2. Then I will say "no honey, remember you had a birthday? You're how old?" After a few tries, and sometimes very insistent "My 2!!" she will say "My 3." I've always thought it was cute, but now it seems more than just a cute little thing she does. Sometimes, I don't want to correct her. It would be easier for people who just meet her to think that she is an extremely tall 2 year old then to explain.
"My daughter had a stroke."
" Yes, she's a girl...her hair is so short because she had brain surgery. "
"She doesn't mean to upset, hurt, annoy, etc. you. She just doesn't understand."

      See, Grace is very intelligent. She can remember names and numbers, songs and stories. She woke up from a coma and knew some people that I never expected her to remember. She can count to ten, say her ABC's (with a few glitches), tell you her address, and the name of her church. She can learn her memory verse and sing Sunday School songs. So, people look at all that she can do and often forget just what happened and how much she has lost. So:

***If Grace licks you, please tell her no and redirect her. It might seem odd or gross, and for that I am sorry. However, she does not mean for it to be either of those things. This is an area in which she has regressed, and we are working on it.
***If Grace throws a toy or hits, again, tell her no and redirect her. try to remember when you're own children were around 1. She is relearning her environment, and some learning is done physically. Again, we are working on it at home on a daily basis.
***She will repeat herself over and over again until she gets an answer. She has a hard time sitting still. She is needy and wants to always be close to someone.
 Please be assured that almost all of the undesirable behaviors that Grace has, we are aware of. At night, in the quiet, when it's just me and God , I often lay awake thinking of my little girl. I thank God with every single breath for my precious children.  I also grieve, just a little. I cry. I question, though I know that I shouldn't. See, I know she's different. I see it in so many more ways than you can even begin to...I am with her every minute of every day. I just love her today just the way she is today and continue to pray.  I will love her tomorrow, just the way she is tomorrow. Please, try to do the same.

Friday, February 5, 2010


I am SO sorry for the lack of updates lately. I can not begin to explain just how tiring it is to be back home! I often sit down with the intention to write an update, and then I fall asleep.

Gracie ia doing quite well, especially since she has been sick, pretty much since we got home. We've had about 600 scares already, but that is really just par for the course. This past Monday she got this nasty gastrointestinal bug that's going around here. Of course, it hit her at 1 am. She woke up vomiting, and off to the ER we had to go. If I had of followed her discharge instructions, I would have actually called an ambulance. They decided to err on the side of caution and do a CT. It looked good, though there are abnormalities on it. I think that those are from the stroke, we will find out when she see neuro on Tuesday. On Tuesday, I ended up taking her BACK to the ER. She woke up from her nap and was acting different. This is the part of all this that I hate the most. When she acts different, even just the tiniest bit, I KNOW it. I notice right away, and then when nobody else sees it or gets it, it makes me feel like I'm a loony toon! She was having a harder time than normal with walking and her vision was not right. She would be talking to me and trying to look at me, but actually looking around or over me. By the time we had sat in the ER for 2 hours, I was starting to think that I was just crazy. The doctor ended up doing a shunt series, all looked well, and so we came home. Then Wednesday night she started sneezing and coughing. Yep, a head cold has all of those symptoms! Today, we ended up at her pediatrician. She has a visiting health department nurse come out once a week on Friday to check her blood pressure, eyes, temp, and lungs. Well, she sounded coarse to her, so she recommended getting it checked. Praise the Lord, she sounded fine to the nurse practitioner.

We are still trying to get the home therapies down pat. It is definitely harder to keep her attention at home. She wants to play with Josiah and Nick all the time. She does try hard though. She continues to have a problem with falling. It's funny. Her never give up attitude is what has gotten her through all of this, still a happy little girl. It's ALSO the cause of many bumps and bruises, because she doesn't give up ever. Especially if she wants to get somewhere or get something.

Please pray for Tuesday's appointment. We will be traveling to Rochester early and getting home late evening.

Tuesday, February 2, 2010

PLEASE pray for my niece...

My 16 year old niece, Mackenzie was life flighted this morning at about 4 am. A spinal tap showed that she had possible viral encephalitis. The hospital in Salt Lake City, Utah has now confirmed this by MRI. She can not talk, but does follow simple commands. She also has fluid on her brain. Since this is a viral infection, they basically just have to let it run it's course, and then see what happens. She is in an immense amount of pain, the pain medications are not even helping. Please, please, please pray for a full recovery. We KNOW our God is able!!!
The top pic is just Mackenzie. Below is a family picture taken in November of 2008. From front brother David, Mackenzie, Devon, my dad holding Gracie, Dononvan, my mom, Daniel, my sister in law Jenn.
My sister in law is also DAYS away from having their 5th child, a little girl. Thanks everyone!!

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