First of all and what this post is all about....we got the results of Paige's MRI and it was normal!!! "Normal appearing brain for age" to be exact. We are so thankful! We see the eye doctor again in 4 weeks and will see what he says. Overall, I am very encouraged. Paige is doing things all the time that make me believe that she can see well right now. She has a GREAT social smile. She watches you walk around the room, she reaches for toys, she reaches for my hand when I am feeding her. All of these have to be good signs. When she tries to focus on objects that are far away her eyes jerk a lot more than if she tries to look at something close. She doesn't seem to have much of a "head tilt", she doesn't hold her head a certain way to make her vision clearer (this would be one of the big things that would make her need surgery). So, we will just keep watching, waiting and praying. Thanks for all the encouragement!
Now some silly things that I am thankful for....
Today is the first official weekend of college football! Love it!! Perhaps the Heels will have a better year, we will see. I just love the football time of year.
Natalie has gone 4 days without pooping in her pants! Now that I have posted, I am sure we will have an accident today. She even went at her "open house" for school on Thursday night. I thought this child would NEVER be potty trained, we will see.
Because Natalie's school is peanut/treenut free there can be no homemade baked goods brought in! Woohoo!! I know you think I am silly but think of the pressure this relieves...no pressure for the perfect, homemade brownies on her birthday or for the million parties throughout the year. Can you hear the sigh of relief? If you bring in fruit/veggies they cut it up for you in the peanut-free kitchen. This is awesome!!
Kim and I went on a date last night. A yummy, yummy dinner. Time shopping for stuff for the house. Time for just us. It was great!
8.30.2008
8.28.2008
MRI done
Paige had her MRI yesterday. She handled the procedure really well. She was really sleepy last night when we got home and grumpy when she woke-up but seems to be back to herself today. She is such a sweet, sweet girl!!
We stayed with her until the medicine made her really, really sleepy and then we had to leave for the nurse to start her IV and do the procedure. Leaving her was so hard! I don't ever want to have to do that again. I can't decide if being a nurse helps or hurts in those situations. Leaving your baby, not easy!! Kim said that I would never make it if one of our kids had to have major surgery and he is right.
We should get the results in the next couple of days. Waiting, not easy!!
We stayed with her until the medicine made her really, really sleepy and then we had to leave for the nurse to start her IV and do the procedure. Leaving her was so hard! I don't ever want to have to do that again. I can't decide if being a nurse helps or hurts in those situations. Leaving your baby, not easy!! Kim said that I would never make it if one of our kids had to have major surgery and he is right.
We should get the results in the next couple of days. Waiting, not easy!!
8.24.2008
People say
the %*&)&% things.
The other day in Target I was carrying Paige in the sling when I complete stranger thought she needed to make some comments...
Strange Lady: Look at the FAT baby.Do you see that fat baby.How old is he?
Me: SHE is almost five months.
SL: Five months, she ready to walk out of here. What do you feed that baby? You feed that baby from the table don't you?
Me: No mama, I don't.
SL: What do you feed her?
Me: Only my milk.
SL: YOUR milk? Your BREAST milk?
Me: Yes mama.
SL: That baby ready for a hot dog! When you gonna start feeding her from the table?
Me: I am buying cereal today....
Paige is enjoying her solid food.
The other day in Target I was carrying Paige in the sling when I complete stranger thought she needed to make some comments...
Strange Lady: Look at the FAT baby.Do you see that fat baby.How old is he?
Me: SHE is almost five months.
SL: Five months, she ready to walk out of here. What do you feed that baby? You feed that baby from the table don't you?
Me: No mama, I don't.
SL: What do you feed her?
Me: Only my milk.
SL: YOUR milk? Your BREAST milk?
Me: Yes mama.
SL: That baby ready for a hot dog! When you gonna start feeding her from the table?
Me: I am buying cereal today....
Paige is enjoying her solid food.
8.17.2008
Laughing
Kim and I were giving Natalie and Paige a bath tonight and had one of those moments that I want to remember forever.
Natalie poured a cup of water on Paige and laughed at herself, the next thing I knew Paige was belly laughing at Natalie. It was the cutest thing ever. For the next five minutes they just looked at each other and laughed. Some magical sister magic was happening and I was so thrilled to be there to witness it. I was laughing too, wanting to cry and wanting time to stop.
I kept looking at Kim thinking, can you believe we have been given these two precious gifts? I am so thankful!
Natalie poured a cup of water on Paige and laughed at herself, the next thing I knew Paige was belly laughing at Natalie. It was the cutest thing ever. For the next five minutes they just looked at each other and laughed. Some magical sister magic was happening and I was so thrilled to be there to witness it. I was laughing too, wanting to cry and wanting time to stop.
I kept looking at Kim thinking, can you believe we have been given these two precious gifts? I am so thankful!
8.14.2008
More thoughts
Thanks to all of you for your kind thoughts, prayers and words of encouragement. We are doing ok.
This all feels so weird. We have this life altering news about our daughter and nothing to do about it. I did do some retail therapy on Amazon buying a fun play mirror and some black and white books, I figure visual stimulation can't hurt.
I just told my mom, I spend about 25% of my day freaking out about the MRI, 25% of my day wondering what in the world the future holds for Paige's sight and 50% of the day ok. My head is still trying to get a grip on what is happening.
I know that God is in control, has a plan and is not surprised by any of this. I am able to find mental rest when I trust Him.
In other news, Natalie is 3 going on 30. When she plays dress-up these days she does not pretend to be a princess, she pretends to be Stephanie, my cousin. You see Stephanie got married in June, Natalie went to the wedding and thought it was to greatest thing ever. So, she is Stephanie (complete with the bride outfit) dancing at her wedding, very cute.
I just got Paige's 4 month pictures back. I hung it on the wall next to Natalie's 4 month picture and it is freakish how much they look alike, freakish!!
Willy Wonka candy was on sale, BOGO at the Food Kitty this week. So, of course I indulged. Why are there banana runts?? Why??
This all feels so weird. We have this life altering news about our daughter and nothing to do about it. I did do some retail therapy on Amazon buying a fun play mirror and some black and white books, I figure visual stimulation can't hurt.
I just told my mom, I spend about 25% of my day freaking out about the MRI, 25% of my day wondering what in the world the future holds for Paige's sight and 50% of the day ok. My head is still trying to get a grip on what is happening.
I know that God is in control, has a plan and is not surprised by any of this. I am able to find mental rest when I trust Him.
In other news, Natalie is 3 going on 30. When she plays dress-up these days she does not pretend to be a princess, she pretends to be Stephanie, my cousin. You see Stephanie got married in June, Natalie went to the wedding and thought it was to greatest thing ever. So, she is Stephanie (complete with the bride outfit) dancing at her wedding, very cute.
I just got Paige's 4 month pictures back. I hung it on the wall next to Natalie's 4 month picture and it is freakish how much they look alike, freakish!!
Willy Wonka candy was on sale, BOGO at the Food Kitty this week. So, of course I indulged. Why are there banana runts?? Why??
8.11.2008
Nystagmus
We visited the pediatric opthomologist today and found out that Paige, hopefully, has congenital nystagmus. I say hopefully because we go for an MRI on the 27th just to be sure that the nystagmus is not coming from a brain tumor. Kim and I and the doctors are all very hopeful that the later is not the case.
During our visit with the opthomologist today her eyes were assessed and some potential causes of the nystagmus were ruled out. The doctor also told us that as of today she does not need glasses but that will probably change in the future.
So, how did we get to today...Kim and I had noticed from an early age that Paige's eyes would drift occasionally and not always track together. I mentioned this at her 2 month check-up in Virginia and the pediatrician assured me that it was nothing to worry about and that it would correct with age. Some time after her 2 month check-up I noticed that her eye's were tracking together again but that sometimes they would twitch back and forth. I just thought it was coming from her eye muscles getting stronger. The twitching appeared to be getting better (I still believe that it is less dramatic than when we first noticed it). At her 4 month check-up, back home, our favorite pediatrician ever, noticed the nystagmus. He recommended that we see the opthomologist to be evaluated.
Until today, I had the hope that I was just imagining things. Until today, I had the hope that this would all just go away. Until today, no one had said to me that "we will decide if she will be mainstreamed for school". Until today, no one had said the to me "she might have to learn braille". What a day.
The Mommie in me instantly started crying, how could this be? Then the Mommie in me instantly wanted to know what I could do to help fix the problem. The answer I received, nothing. We just have to see how things evolve. What do you mean, nothing? Surely there is some therapy that I could be doing with her to help her vision develop as normally as possible but they tell me no.
All I can do is pray. All I can do is pray. Pray that her visual acuity will be the best it can possibly be. Pray that her brain will determine the best way possible to help her see as normally as possible. Pray that children and their parents will not judge her based on her wiggly eyes. Pray that her heart will be protected and prepared for the day when kids are mean to her because she is different. (Pray for the first kid who teases her because of her eyes, that I will not kill them and that they will see the next day, kidding, sort of).
This is the beginning of a long journey. When we were given Natalie's diagnosis (congenital hypothyroidism), we were given a solution and a known path. Give her this pill every day for the rest of her life and she will be FINE. That is not the case for sweet Paige. We do not know what the future will hold. She could be very close to normal, she could be legally blind. She could require eye surgery some day, she could never have to have eye surgery. We just don't know, that feels the hardest right now. From everything that I have read, every case is different.
Please join me in praying for Paige. As I have been thinking today I have been reminded that none of us as parents know what the future holds for our children, we just have a little extra something to worry about, as added element of unknown. Even if Paige didn't have wiggly eyes I am sure that kids would be mean to her but now that seems so much more real. Even if Paige didn't have this who knows what tomorrow holds for us/her. Having a "diagnosis" , a known problem just makes tomorrow seem that much more challenging.
While I was talking to my mom today, I was sitting on the front porch and watched a beautiful butterfly fly through the air from flower to flower. The first thing that came to my head was, I wonder if Paige will ever be able to see that. I hope so. I hope she will be able to see and appreciate the beauty of God's creation. That is my prayer.
During our visit with the opthomologist today her eyes were assessed and some potential causes of the nystagmus were ruled out. The doctor also told us that as of today she does not need glasses but that will probably change in the future.
So, how did we get to today...Kim and I had noticed from an early age that Paige's eyes would drift occasionally and not always track together. I mentioned this at her 2 month check-up in Virginia and the pediatrician assured me that it was nothing to worry about and that it would correct with age. Some time after her 2 month check-up I noticed that her eye's were tracking together again but that sometimes they would twitch back and forth. I just thought it was coming from her eye muscles getting stronger. The twitching appeared to be getting better (I still believe that it is less dramatic than when we first noticed it). At her 4 month check-up, back home, our favorite pediatrician ever, noticed the nystagmus. He recommended that we see the opthomologist to be evaluated.
Until today, I had the hope that I was just imagining things. Until today, I had the hope that this would all just go away. Until today, no one had said to me that "we will decide if she will be mainstreamed for school". Until today, no one had said the to me "she might have to learn braille". What a day.
The Mommie in me instantly started crying, how could this be? Then the Mommie in me instantly wanted to know what I could do to help fix the problem. The answer I received, nothing. We just have to see how things evolve. What do you mean, nothing? Surely there is some therapy that I could be doing with her to help her vision develop as normally as possible but they tell me no.
All I can do is pray. All I can do is pray. Pray that her visual acuity will be the best it can possibly be. Pray that her brain will determine the best way possible to help her see as normally as possible. Pray that children and their parents will not judge her based on her wiggly eyes. Pray that her heart will be protected and prepared for the day when kids are mean to her because she is different. (Pray for the first kid who teases her because of her eyes, that I will not kill them and that they will see the next day, kidding, sort of).
This is the beginning of a long journey. When we were given Natalie's diagnosis (congenital hypothyroidism), we were given a solution and a known path. Give her this pill every day for the rest of her life and she will be FINE. That is not the case for sweet Paige. We do not know what the future will hold. She could be very close to normal, she could be legally blind. She could require eye surgery some day, she could never have to have eye surgery. We just don't know, that feels the hardest right now. From everything that I have read, every case is different.
Please join me in praying for Paige. As I have been thinking today I have been reminded that none of us as parents know what the future holds for our children, we just have a little extra something to worry about, as added element of unknown. Even if Paige didn't have wiggly eyes I am sure that kids would be mean to her but now that seems so much more real. Even if Paige didn't have this who knows what tomorrow holds for us/her. Having a "diagnosis" , a known problem just makes tomorrow seem that much more challenging.
While I was talking to my mom today, I was sitting on the front porch and watched a beautiful butterfly fly through the air from flower to flower. The first thing that came to my head was, I wonder if Paige will ever be able to see that. I hope so. I hope she will be able to see and appreciate the beauty of God's creation. That is my prayer.
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