Ruth and Music

I started this blog on Friday evening and it is now Saturday morning, or as Brian says "game day". He is next door in the nursery dressing Ruth in her Virginia Tech onesie and socks. The hair bows would be used, but I think she would just take them out of her hair. Enjoy the video. It is from a week or so ago.

Our Little Pumpkin

Brian is feeding the baby, and I thought I would post some pictures before bed since I don't know what tomorrow will bring in terms of naps. Enjoy!

Get In My Belly

Ruth has learned how to give kisses, we think. Her new favorite thing is to grab my head with her two little hands and open her mouth and seemingly bite my face. On occasion her two bottom teeth will scrape my cheek and hurt a little. She will also sometimes move from one cheek to another and will look at me in the process and smile. She seems to really like this game. I have really enjoyed my time with her Tuesday and Wednesday. Monday, however, was another story and resulted in a frantic phone call to my mother for advice on how to get a baby to sleep. Ruth won that argument and yet again came out of the crib. Yesterday and today she has either slept in the car while running errands or slept in my bed while I read. I know, I am not establishing good sleep habits but I had to do something to keep from getting upset at her all the time, and I have really enjoyed the extra smiles I have gotten Tuesday and Wednesday.

She does have a little stuffy nose. I slept the second half of the night in the nursery last night to be close to her. She didn't wake up after I moved in there so I think she knew I was close by her. Brian will be posting some pictures of Ruth in her new Halloween sleeper and the hat he bought her last year (obviously before she was born).

Smarter Than Us with 1/4 the Vision

Ruth had her functional assessment yesterday at the Center for the Visually Impaired in Atlanta. This was Ruth's first trip to Atlanta proper. I always forget what a neat city Atlanta would be if it weren't for the horrific traffic. But, going in the middle of the day and getting out before rush hour begins at 4pm isn't so bad.

Even though I have medical proof that Ruth is a person of low vision, every time I hear someone new say it I feel like I have been punched in the stomach. The lady at the center said that there was no doubt that Ruth was a person of low vision and this was just watching her play and be held by us. I felt so stupid that I could not and still sometimes do not see (pun intended) that aspect of my daughter. But of course, I don't know what a "normal" five and a half baby should be doing. I do know that every doctor, health professional and care giver uses words like bright, clever, stubborn, alert, or smart to describe her. Yesterday was no exception. Brian is excited that Ruth will be smarter than us and challenge us at a young age. I was hoping at least to get past third grade homework before she outsmarted me. But since the child has learned how to avoid naps at all costs, she may have already outwitted me.

The lady at the center did tell us that Ruth has reached all the developmental milestones for a five and a half month old and in some has exceed them. When you consider that children of low vision usually achieve these milestones slower, the fact that Ruth has either reached or exceeded them is great news. The only one she had not was seeing the baby in the mirror. This is in part because the mirror I gave her to play with at home was too small so she focused on it an an object and the big mirrors in the house or the studio reflect everything. But yesterday, as Anne (the lady) held a large mirror in front of Ruth and told us that Ruth was seeing the light not the image an amazing thing happened, Ruth saw herself. The complete joy filling Ruth's face as she smiled, giggled and slapped the baby in the mirror was enough make my eyes overflow with tears and to make the ladies at the center think I need a support group. I don't know if I am holding on to the hope that maybe her vision is better than I have been told to expect or if just seeing my daughter be "normal" and enjoy it so much is the reason I cried. But I don't care. And I don't care if I do need a support group. Ruth saw herself in the mirror and loved it.

I took Ruth to the studio last night so I could take a ballet class of which I made it through without falling. Brian had visited a store after our trip to the center and met me at the studio to pick up Ruth. I took Ruth to the door of each room and she loved hearing the different music and I assume seeing the vast array of colors moving in each. She was kicking her legs and moving her arms and showing her teeth as she smiled. So all in all, yesterday was a good day for us.

Thank you again for posting, e-mailing and calling. Brian and I have literally been living off the support we have been given by you.

The President Welcomes Ruth

We got a card in the mail last week from George and Laura Bush welcoming Ruth to, for lack of a better word, America. Apparently, Natalie's friend Angela has some major petition power with 'The Decider', who then decided that it would be a nice gesture for them to send Ruth a little card. We are honored to have such a keepsake to add to Ruth's baby book (and I mean that seriously...really). The writing on the card is:

"Welcome! We are delighted to join your family in celebrating your arrival. You have already brought much happiness to those around you, and you've just gotten started!

We are glad you are now part of the wonderful American story. Our nation holds great opportunities for you. May you make the most of your unique gifts, and may happiness and love surround you always. Sincerely, George and Laura Bush."

It seems fitting that it would take the government 5 months to welcome in a newborn. And I assume, if Barack Obama is elected, they will have to remove the 'Our nation holds great opportunities for you.' line. I guess I should just be thankful that we didn't have to wait on Nancy Pelosi to make the decision to send a card, she needs the extra time to procrastinate on a vote on an energy bill. You're right...I should get off my political soapbox and surround my daughter with love and happiness. That's what I call 'strategery'.

Note: This post does not reflect the view of all of Ruth's parents. However, Obama may be the anti-Christ.

World Domination or Just Gibberish?

It seems that Ruth has discovered that banging on the keyboard equals something happening on the screen. So today I decided to exploit that a little and see how it turned out. The following is a transcription of what was written by our budding writer/evil villain.

"B nh njghh uui,,p. nb cggggggggggggggggggggh qamhhhhhb hl’;9p[-;,iiirnm k o .;l ,. Mitj nym j

.’
imbnkb ck .. m kgg76tutl,8jfs[ l.
e/;]

p,,;/.7 msx,m ,m, ; n g bb ruth berry hk[ m"


Her name is the only thing I could make out and that is because I wrote it....using her finger. We are currently having NASA scientists decoding it's true meaning. Sure it could just be gibberish but we think it may be the beginning of a plot to take over the world...starting with the top floor of the house. I don't trust that kid, she's shifty. If anything unexplained should happen to me and Natalie....blame the baby.

Ruth at the Ryman

This picture was taken of Ruth at the Ryman Auditorium back in July. If you look at older posts, you will see a video of her dancing with me at the Ryman and now on stage with her daddy "singing" on the stage.

We are exploiting her love of music and movement. Since Ruth does not like to sleep during the day unless she is just tuckered out, we are assisting in that effort. Brian likes to hold her up and have her "swim" as he carries her from room to room, sometimes accompanied to music. I like to dance around with her or take her to the grocery store and put her in her Baby Bjorn (baby carrier). She loves to kick her legs around and loves it when I bend down to pick up chicken out of the cooler. She has many friends at the grocery store who say hi to her each week.

Today I (Natalie) started back to work. I am only working three hours on Monday and then Nutcracker rehearsals on Saturdays and possibly a Friday night class if it makes. Ruth got to see her old friend Ms Leigh Ann and Ms Maggie today and seemed very excited to get to play with them again. Tomorrow we go to the Center for the Visually Impaired for a functional assessment to see how much vision Ruth is using right now. We will let you know how that goes.

No Sleep for Ruth

Ruth has decided this week that she no longer needs naps or that a short ten minute nap will do. Needless to say, I am losing my ever loving mind. In fact, I can hear her right now next door in the crib talking to her pacifer (instead of sleeping). She threw a screaming fit this morning and I just let her scream for a change thinking she would stop. She didn't. I didn't look at the clock but it went on for at least over 20 minutes. She threw one on Monday that lasted for over 40 minutes and resulted in me giving up until Brian got home when I ran away. Wednesday night she cried for 35 minutes until going to sleep for the night. When she screamed this morning, I finally picked her up and feed her (early) and she ate and then dozed off in my arms. But since I can't spend my day in the rocking chair, I let her sleep for 10 minutes and then got up to put her in the crib. She woke up instantly and is still awake about to start screaming again.

Help!!!!! Am I the only one going through this?

Good Morning Sun, Happy Morning Everyone

(The title of this post comes from Ruth's favorite book entitled "Wake Up" by Sondra Boyton. If you are a mom, you must buy her books. "Barnyard Dance" is another favorite. I even used "Barnyard Dance" in all my dance classes on the last day last spring as a choreography day. )

Ruth used to sleep until 7:30AM. Then she decided that she needed to be up when the sun was rising at 6:30AM. Now, she has decided that daylight is overrated and beating the sun is where it is at...she now enjoys rolling on her tummy at 5am, getting stuck and crying and finally watching her mother give up at 5:30 and put her in bed with mommy and daddy. Ruth enjoys scratching and hitting her mother's arm until she (Ruth) falls asleep but good ol' mom never goes back to sleep.

Does this sound familiar to anyone? Please, please, please, if you are a mom and this sound typical to you, let us know. Brian and I think that either we are doing something wrong or that Ruth is slowing brainwashing us into submission.

This was shot over a month ago. The video was too long to post so Brian had to edit it down and take the sound out of it. We tried to post this yesterday, but since Ruth has decided that she would not sleep yesterday or today, I am just now getting it done. To run away, we took Ruth on a picnic last night to the lake and she really seemed to enjoy kicking around in the back of Daddy's truck while we drank root beer and watched the sun set over the lake.


We started Ruth on pears today and she seems to like them as much as sweet potatoes. So far she has had sweet potatoes (likes) bananas (okay) carrots (had to stop due to vomiting them up), peaches (okay) green beans (likes) and now pears. Next comes squash. Yum!

First Words

It is time for us to get back to normal posts about Ruth. We will post updates on doctors visits and things but will focus on Ruth's developments and daily life.

Yes, it is true, Ruth said her first word on Friday at only five months old. Let me give you some background. Ruth really only cries now and pitches a fit when she is tired. This girl will fight sleep until she practically falls asleep mid-sentence. On Friday it was a typical day with me trying to put Ruth down for a nap and Ruth fighting me. She started to cry saying "unn gee, unn gee." Since she only says these words when angry, I can only assume that unn gee means angry. She has exercised her new word several times since then and every time it is during an angry fit.

To Ruth I simply say, "unn gee indeed. Unn gee."

He Keeps Me Singing As I Go

Those of you that go to "real church" (now, hold on, I pick at people who go to services that only sing praise songs and not hymns, I don't really mean that there is a separate heaven: one for people who sing hymns and one watered down for those of you that sing praise songs. This is just a joke I developed with a former student of mine who sings praise songs and is probably going to devote her life to the ministry. If she can laugh, so can you) may not recognize the title of this blog as being from a hymn. But it serves as the perfect title for my entry today.

For the third morning in a row I have awakened singing a hymn. This first and second day I woke up singing the choruses to songs. Today, the third day, I was making Ruth's bottle before I realized that I was singing in my head. Since I only remember the words to the choruses, I have to get out my Baptist hymnal and sing the whole song. I know this is God talking to me through my favorite part of church, the singing. I want to share His message to me with you and hopefully it will speak to you in whatever circumstance you are in need.

Since most of you who read this do not sing hymns anymore (boy, real heaven is going ot be lonely) I have typed the words to the three songs for you. If you know them, I hope they make you sing them all day too.

Day One: Blessed Assurance, Jesus Is Mine
Blessed assurance, Jesus is mine! Oh what a fore taste of glory divine! Heir of salvation, purchase of God, born of His Spirit, wash'd in His blood
Chorus: This is my story, this is my song. Praising my Saviour all the day long. This is my story, this is my song. Praising mySaviour all the day long.
Perfect submission, perfect delight, Visions of rapture now burst on my sight. Angels descending bring from above, echoes of mercy, whispers of love (chorus)
Perfect Submission, all is at rest, I in my Saviour am happy and blest. Watching and witing, looking above, fill'd with His goodness, lost in His love. (chorus)

Day Two: Heavenly Sunlight
Walking in sunlight, all of my journey, over the mountains, thro' the deep vale. Jesus has said "I'll never forsake thee" promise divine that never can fail.
Chorus: Heavenly sunlight, heavenly sunlight, flooding my soul with glory divine. Hallelujah, I am rejoicing, singing His praises, jesus is mine.
Shadows around me, shadows above me, never conceal my Saviour and guide. he is the light in Him is no darkness, ever I'm walking close to His side. (chorus)
In the bright sunlight ever rejoicing, pressing y way to mansions above. Singing His praises gladly I'm walking, walking in sunlight, sulight of love. (chorus)

Third Day: Let Others See Jesus in You
While passing thro' this world of sin, and others your life shall view, be clean and pure without, within, let others see Jesus in You
Chorus: Let others see Jesus in you (in you) Let other see Jesus in you (in you) Keep telling the story be faithful and true. Let others see Jesus in you.
Your life's a book before their eyes, they're reading it thro' and thro'; say, does it point them to the skies, do other see Jesus in you?
(Chorus)
What joy 'twill be at set of sun, in mansions beyond the blue, to find some souls that you have won, let others see Jesus in you
(chorus)
Then live for Christ both day and night, be faithful, be brave and true, and lead the lost to life and light, let other see Jesus in you.
(chorus)


Some of you may know that when Ruth was little and screaming, that I would rock her and sing her hymns to get her to stop and sleep and to keep me somewhat sane. I will tell you that the above songs were not the ones I would sing to her.

Today we bid a sad farewell to our dear friend Connie who has been such a great help and blessing in our life, even more so since Ruth was born. She is moving with her husband to La Grange, Georgia and will be working in the Auburn, AL school district.

The next post will be shorter...unless He keeps me singing as I go....

Open My Eyes to See Your Majesty

I have not written in several days because frankly, I haven't had it in me. I did try yesterday to post a video of Ruth eating sweet potatoes but the file was too big and never did upload.

I will say that we started this blog to provide our parents and opportunity to see Ruth and her developments since they live so far away. Now, this blog will additionally serve the purpose for updates on her medical condition as well as an outlet for me to express our emotions.

The weekend was hard for Brian and me. As we tried to wrap our mind around the idea that our child is a child of "low vision" we analyzed everything she did looking for clues. We both became depressed, but Ruth smiled and giggled and spit up carrots every time we tried to get her to eat them. Brian and I have clung to each other feeling separated from the world. Saturday morning was the worst for me and Sunday afternoon for Brian. But we made it through the weekend. Thank you to so many of you who called or e-mailed. Thank you for praying for her and putting her on your church's and bible study group's prayer lists. To Angela Rogers Pierce, thank you for your words. Your call came at the exact time I needed a phone call and the things you said were perfect.

We took Ruth back to the ophthalmologist today and he confirmed her diagnosis of OA (see earlier post for definition). However, he did say that the amount of pigment in the retina is directly related to the amount of vision on has. Ruth does have some pigment, although not the normal amount. He said that OA is a spectrum disorder, meaning that has a range. Now, while Ruth can see (she smiles when we smile, follows objects) to the extent that she can see we will not know for years. Of course, this is tough for us. He did say that it is in his opinion that Ruth will be on the good end of the spectrum.

Ruth has always liked the ceiling fan and lights, which we took to me that she could see. The nurse said that children with low vision will look at ceiling fans and lights. She also said that while Ruth can see us, we are probably fuzzy to her the further away we get. Ruth will more than likely be slower than other kids to crawl, walk and talk. However, she will reach these milestones. This is also hard for us because Ruth has reached every milestone either right on target or earlier. To acknowledge and accept that Ruth is a child with low vision is hard because we see her see. Now I am wondering if we are all Monet paintings to her. (I prefer Renoir, myself). But the hope we are taking with us today is that she is on the good end of the spectrum. We cling to that, but we will need to be reminded of that, I am sure.

We are also having to see a slew of other doctors. We have a second opinion on October 7 with another ophthalmologist, we have to see a retina specialist, a geneticist,and a pediatric dermatologist. Are you adding up the dollars? Is is funny what you will do for your child, isn't it? I have been needing to see a dermatologist for over a year about a mole and Brian put of getting a crown for a year. But we aren't blinking an eye when it comes to making these appointments for Ruth.

Here is an amazing praise. We have been told that the genetics counselors are booked until December and in Georgia you have to qualify to see them due to the high volume. I left a message with a doctor who is in private practice in genetics and she just called me back and we have an appointment next Thursday. She sounds so positive and so caring on the phone.

For people that are asking what we need, we don't know anything tangible. I know Brian would say babysitting so we could have a date but right now I don't really want to leave Ruth. But I will provide a prayer list that will be updated. I would ask that if you read these blogs that you let me know time to time by posting a comment or by an e-mail. I do feel more positive right now after talking with the genetics doctor.

Also, we have a meeting with the Center for the Vision Impaired next week. The lady on the phone said that while doctors will say that people with albinism tend to be smarter than the average public, she said that without a doubt, people with albinism are off the charts intelligent. We have had clues that Ruth was smart and has been called clever by more than one doctor.

Here is a prayer request list for today:
Peace and acceptance
Able to get appointments with the retina specialist and dermatologist
Peace over financial worries

Thank you. I will try to post again soon and will post some updated pictures. We really value the support we have received.