Monday, December 28, 2009

Merry Christmas...A Few Days Late

We were a busy bunch this holiday season.  Between my birthday, holiday parties and family obligations, I felt like we were non-stop.  Stephen and I have rotated holidays between our two families since we have been married.  One year one family gets Thanksgiving and the other gets Christmas and then we switch the next year.  This plan has worked really well for us and we can probably squeeze one or two more years out of it until Perron gets too old and we won't travel for Christmas anymore.  This year it was Stephen's family's year for Christmas so we loaded up and headed down to Mississippi.

Before we left, we went to my parents' house on December 23rd and had a delicious holiday meal of beef tenderloin and opened presents with my parents and my little brother and sister.  Diana and Trae had come up in November and we had our big holiday celebration then, since Diana can not be away from the hospital at the holidays.  We got up early (otherwise known as Perron's regular wake-up time) on Christmas Eve and started the 5 hour journey to Stephen's parents house in Mississippi.  Now, prior to this point, Perron's longest car ride had been 45 minutes.  There is a good reason for this.  He has a fabulous habit of deciding that his car seat is fashioned out of nails as soon as his body hits the seat and typically starts screaming bloody murder as soon as we put him in think I time I had to stop and get him out of the car seat before we had even made it out of the driveway because he almost threw up he was crying so hard.  All in all, the car ride went much better than expected.  Especially considering it poured down rain almost the entire trip and Perron only slept for like an hour and 15 minutes.  Of course a family occasion can not pass by with out an Adventure in Poop, so I have a story to share.  We stopped at a gas station in god only knows where Alabama (otherwise know as Georgiana) so I could feed Perron.  Of course it was pouring down rain so I couldn't get out of the car to change him, so I had to change him in my lap.  Not easy, but doable since he had only this point.  Diaper changed, baby fed, all is well and we are back on the road.  I am not kidding you, we were pulling onto the interstate from the entry ramp and I look over an Mr. Poo-Poo Pants is grunting away.  Did I mention it was pouring down rain and very cold.  So we drive a little while hoping that maybe he doesn't mind laying in his own waste and we can make it to the rest stop to change him.  WRONG!  He starts to voice is displeasure with his current diaper situation, leaving us no choice but to stop at the nearest exit.  Long story short...after first pulling in to a very sketchy "roadside motel" I ended up having to change him in the bay of a self-service car wash facility in Evergreen, AL.  Oh holiday family memories....

We finally made it to MS (Did I mention that I had to sing Jingle Bells on repeat from the MS state line all the way to my in-laws) and embarked on two days of family holiday festivities.  Overall, he did pretty well considering everything that was thrust upon him over the course of two days.  He refused to nap pretty consistently which makes it hard and he certainly cried more than he usually does, but he managed.  I too probably cried and fussed more than I normally do, but I managed as well. :)  We have paid a very high price for him being out of his element and he has been extremely fussy since we got home.  I feel like we have reverted back to Perron of old and he probably hasn't been this fussy in well over two months.  I am hoping over the next couple of days that he will settle down and get back in to his regular routine.  He definitely is not ready for that many dramatic changes in environment and routine yet.  It makes me VERY nervous for daycare.   I told Stephen it will be quite some time before we travel with him again.  I had already told my parents  there wasn't a bats chance in hell that we would be joining them in the mountains for New Year's this year.  I don't think Perron could take it and I guarantee that I couldn't take it.

Perron got showered with gifts and attention the entire holiday season.  We are going to need another house just to hold all of his toys.  Here are some pictures from all of our holiday gatherings.  As you can see, he is one cute little elf (with quite the Christmas wardrobe).  I hope everyone had a happy and blessed holiday season!

What do you mean a man is coming down our chimney?

Is that safe?

In my present palace

At the Crigler Family Christmas

With My Grandma

Posing with my presents Christmas Morning

Tuesday, December 22, 2009

This Day A Year Ago

This day a year ago was the day that I found out I was pregnant with Perron. A day that would change our lives forever, sometimes for the harder, but always for the better. The day I learned that my dream of having a child had come true. A true Christmas miracle, and the best gift I have ever received. We had been going through the infertility process since August (a micro-second in the land of infertility) and I had just had my first round of Clomid. Several days prior I had had my progesterone levels checked and they were very high compared to where they had been. I was surprised, but didn't put together that that might mean I was pregnant. Fast forward about 20 days. I was supposed to have my period over the weekend and they had told me to call no matter what day if I was late. I of course didn't think anything of it, and didn't call over the weekend. I waited until Monday morning to call and they told me to come in. Since I refused to take home pregnancy tests because I was tired of the disappointment I felt month after month, when it would be negative; they told me to come in. I would give a urine sample and if that showed anything they would take bloodwork and try to get a confirmation. I didn't tell anyone that I was going in for the testing. In fact, I talked to Stephen in the car on the way to the hospital and didn't mention a thing about it. In fact, he thought I was sitting in my office talking to him. I was so convinced that the test would be negative that I didn't want to get anyone's hopes up, including my own.

So into the infertility department I went to pee on my little stick. I took it out to the nurse and started gathering up my things. I didn't even look at the stick before I handed it to her. So I am getting ready to leave and she says "I think I see something". My heart lept and my stomach dropped. I walked over and sure enough there was a faint line. I could not believe my eyes. So she starts talking about blood work and HCG levels and talking to the doctor and blah blah blah. She kept talking to me like I was pregnant, but I still didn't believe it. She told me that they would call me sometime after 2pm with the results. I was crazy enough to tell her that I would be in meetings all afternoon and to just go ahead and leave the news on my voicemail. Was I insane or what !?! I was too scared to get my hopes up because I knew I would be devastated if it turned out to be a false positive. I just kept thinking it was too soon, I had only had one round of clomid, it wasn't supposed to be this easy. So I left the office fully expecting them to call me back when my bloodwork came in and tell me it had been a mistake. The only thing I allowed myself to do was go and get a little cross that had a bible verse that said "For this child, I have prayed". If the test results were positive, I wanted to have a neat way to tell Stephen.

So I went back to work...and I had all my meetings...and they did leave the news on my voicemail....I was pregnant. I saved that voicemail for a long time and would listen to it periodically. It was the message that would change Stephen's and my life forever. I came home from work and told Stephen that I had bought him a little present that I wanted him to open for Christmas. On the cross, I had taped my pregnancy test from the hospital. What I didn't realize is that I had put tape over the area where you could see the results of the test. Whoops! So he opened it and was looking at it very confused. I finally blurted out...I'm pregnant. He was shocked and excited to say the very least.

And that was the first chapter in the beginning of a very long, sometimes scary, often hard journey that brought us the most precious gift we have ever received. It is amazing how much can change in one year.

In the Battle of Man Vs. Swaddle....

MAN WON! Can you believe it? I have been dreading this day since he was eight weeks old. The day we would have to say good-bye to the swaddle. I knew that it would be a day that lived in infamy...but I assumed it would be for all the wrong reasons. Perron had started rolling over onto his stomach in the middle of the night and I found him lying on his tummy two different times when I went in to check on him two nights ago. I knew that as much as we all loved the swaddle...and the sleep it gave was time to say good-bye. I was just too nervous about him rolling over and getting trapped without having his hands free to maneuver himself with. I had read all the chat boards, I had solicited my friends for advice, I had tried to putting it off, but in the end Stephen and I decided to go cold turkey and see how it went.

We did our regular bedtime routine and then laid him down in his little sleep positioner. That was our only big mistake. He stayed asleep when we laid him down, but then he let his arms relax, they landed right on top of the positioner. That of course woke him up and started about 35-45 minutes of on and off crying. I tried a tiny version of the Ferber method were I would let him cry for three to five minutes and then I would go in to give him his paci, rub his little head,calm him down, but not pick him up. I did this for 3 or 4 times. On the last time, I decided I would just sit him his chair and position myself so he could tell that I was in the room, but could not see my face. This seemed to do the trick. He fussed a couple more times, but I just put the paci in his mouth and went back to my seat. He checked a couple of times to make sure that I was still in the room with him and then slowed started to close his eyes. He jerked awake two more times, but would close his eyes each time.

Stephen and I decided to split the night like we did when he was a newborn just in case things fell apart. I took the first shift and slept on the couch. I woke up at 12:30 to go check on him and he was sound asleep with his little arms just moving all around. He didn't wake up until 3:30, when he started bashing his head against the crib rails. Stephen moved him back to the middle of the bed and he flashed Stephen his biggest "i'm wide awake" smile. Stephen put his paci back in his mouth and went to sit in the chair. Before he knew it, Perron had flipped onto his tummy (confirmation that the swaddle needed to go). At that point, Stephen just went ahead and gave him a bottle. He fell asleep and didn't wake up again until 7:30. IT IS A CHRISTMAS MIRACLE!

Now, I am fully aware that because I have gone to all this trouble to tell the world that he slept without a swaddle, that he will sleep a total of 4 and a half minutes tonight. He has proven that as soon as I announce some big milestone (see the coming home from the NICU post as evidence), he will throw a massive wrench in the plans. So fingers crossed this is not an anomaly and we have a baby that for once has done something the easy way! The next hurdle will be trying to get him to nap somewhere other than his swing. We will save that battle for another day. I will keep you all posted as the swaddle saga continues to unfold.

Friday, December 18, 2009

5 Months Old

Dearest Perron,

Well, you really took us on a roller coaster ride this month. We have learned from the very beginning that you never liked doing things the easy way. Luckily we have found that the hard way still provides the same precious reward. Your vision gave us quite a scare, but you proved everyone wrong again and chose to show us that your vision was just fine on Thanksgiving. What a true reason to give thanks!

You are weighing in at 10 lbs. 11.5 ozs. You are wearing your 3 month clothes and they fit you pretty well. You are super skinny, but your feet are huge so you usually grow out of clothes because your feet are too long for the footie part. You are still in Level 1 diapers, and I have a feeling you will be for quite a while because they go all the way up to 14 lbs. I think we have a while until we get there. You are eating 5 and a half ozs. at a time. It is hard to belive that when you first started to eat you were only getting 10 ccs at a time. My how things change in five short months.

You are so cute and you love to smile. You have started laughing too, which is the most adorable sound in the entire world. You love to be tickled and you will let out these short burst/squeals of laughter which are so funny. You love it when mommy sings and dances for you. We are like a regular Broadway production together. You can regularly roll from your stomach to your back and you are starting to experiment with trying to roll from your back to your stomach. I can tell that you are starting to work through the process, because you will kick your legs over to the side as hard as you can. You can roll from side to side, so I know it is only a matter of time. You love to put EVERYTHING in your mouth. That is the primary way that you play with things. Your favorite toy is your hungry catepillar. You are so strong and you still love to stand in your mommy's lap and look around. You can sit up if we support you and you can even sit in your Bumbo chair for a little bit of time, as evidenced in your picture this month. We just put your jumparoo together for you today and you LOVE it. You don't understand how to make it bounce, but when mommy does it for you you just smile and laugh and look so excited.

It is hard to imagine that this time last year I was pregnant with you and didn't even know it. It seems like so much has changed in such a short period of time. The trials that we have all been through together this month have only made your daddy and I love you even more. I didn't think that was possible. You are our reason for being. We are so proud of you and can not believe that you are ours. You bring so much joy into our lives!

We love you more every day,

Mommy and Daddy

Friday, December 11, 2009

Dear Santa

Dear Santa,

Wow, it's been a long time since we last talked. I am hoping that your feelings aren't hurt after I claimed at age five that I no longer believed in you. w that I am a big girl and have big girl concerns, I thought I might try and strike up our relationship one more time to see if you could throw me a couple of bones. I think you will find that my wishes for this year are quite different than the days of wishing for a walkman cassette player and a VHS of Dirty Dancing. Although, those gifts were much appreciated and talked about at the time...and Dirty Dancing does remain one of my all time favorite movies. But, I digress. I was hoping you might listen to my pleas one more time and help a sister out. Okay here we go.

I would like the ability to sleep through the night back. I mean seriously...I don't think I have had a full night sleep in over a year. First there was the pregnancy,and its many nightly trips to the bathroom. Then there was the NICU stay were even though I didn't get the joy of having my baby home I did get to experience the joy of waking up in the middle of the night to pump. Next came the sleepless nights when Perron thought it would be a good idea to only sleep in 45 minute intervals. Now my almost five month old regularly sleeps through the night....but I can't. WHAT IS UP WITH THAT!?! So Santa, if you could please restore my ability to close my eyes at nighttime and not have them open until it is time to get up in the morning, I would really appreciate it.

Alright, this one might be a little harder, but I still remain hopeful since you can do anything that is asked of you. I would like you to please soften the cold, hard hearts of the people at Blue Cross and Blue Shield of Alabama. I mean really....did they have to change the guidelines for RSV shots this year of all years. And since when did allergic colitis become a diagnosis that is no longer covered under our policy. For god's sake...he was bleeding from his intestines. So now I am stuck with forking out $2,000 a month for RSV shots and $350 a month for formula just so my baby can eat. So, like I said, if you could work some magic on the scrooges at BCBS, I would really appreciate it.

Lastly, I want my old stomach muscles back. I know I know, I should have thought about that before I got pregnant, but my overwhelming desire to have a child got in the way of my vanity...well guess vanity is back. If I never eat, everything is pretty under control. A relatively flat and happy stomach. However, so much as one bite of food and it is back to looking like I am 3 months pregnant. You have a little time to work on this one since I won't be in a bikini again for another couple months, but I would prefer not to have to starve myself my entire beach vacation.

And I know that I said the one above was the last one, but that desire got me thinking. Can I have feeling back around my c-section scar. It really weirds me out, I am not going to lie. I am afraid to touch it and Perron has already decided that when he stands up and jumps up and down in my lap, that little reminder of how he got here is the perfect launching pad for him. It feels funny and I don't like it. I really don't think that is too much to ask.

So, when I am all snug in my bed with visions of sugarplums dancing in my head, if you could swing by my place and leave me those things under the tree, it would really make my Christmas.

Love you Santa Baby!

Thursday, December 10, 2009

So I was out of town for work (a NIGHTMARISH trip might I add) for the past two days and Stephen had to play Mr. Mom. Lots of my friends asked "are you nervous to leave Perron with Stephen" or "is Stephen nervous about having Perron all by himself?" or stated that their husbands would never make it on their own. Lots of his friends asked who was coming to help him or would he be able to do it on his own. Both of us thought that these were funny questions, because we never assumed that there would be any problem with Stephen being solely responsible for the duties of the house and the baby while I was gone. Stephen has always shared in the responsibilities of parenthood. He would stay up in the middle of the night with him even while he was working and I hadn't gone back yet. He wipes heinies and dabs spit up. He makes bottles and feeds babes. Basically he does just about anything that I do.

I have thought about doing this post for a long time and haven't done it because I didn't want to embarrass Stephen...oh well, too bad! Me leaving the two boys alone has motivated me and I am going to do it anyway.

I have thought many times in this journey we have been on since Perron was born, how lucky I am to have him in my life. He is supportive, caring, and devoted to both me and our son. He is a partner in the truest since of the world. He is nicer to me than I frequently am to him. He is patient and kind...two things that I am not always. He is the perfect counterpoint to my fiery tendencies. He is calm when I am not. He is levelheaded when I loose my ability to be. He is gentle where I am hard. He is strong where I am weak. He helps without question. He advises without pushing. He listens (most of the time) without instructing. I like to think that I am his counterpoint as well, but I think that he might have gotten the short end of the stick.

I often think that if I could just have some of his better qualities I would be a better person for it. But just as I say there couldn't be two of me in a marriage, I guess the same applies to him. I hope that my enthusiasm, energy, and drive serve as an inspiration to him, the way his kind, gentle spirit is an inspiration to me.

We have been through a lot together in the four years we have been married, and I know our long life together will bring other storms to weather and joys to share. I also know, that I could not be sharing my life and raising our child with a better person. Perron and I are both blessed to have him.

Sunday, December 6, 2009

An Early Christmas Present

I have been meaning to post since Tuesday, but this week has gotten away from me. We received an early Christmas present on Tuesday when Perron's PT and OT came to the house for his therapy session. The PT was the referring PT who did his initial evaluation for admittance into early intervention and his OT was with us for his entire eye appointment a couple of weeks ago. As soon as "K", his PT, came into the house Perron was all smiles for her. She must have said a million times how he was a completely different baby from the one she had seen the first time. Then "N", his OT, came and she could not believe the progress he had made in a week and a half. Here is the best part. She said that in her professional opinion he did not need to see the neuro-opthamologist. Both she and "K" said that if they had just met him for the first time, without knowing his vision history, they would not think anything was wrong with his eyes. WHAT A BLESSING! This is truly the miracle we had all been praying for and it happened. God is good to this family! So....I am going to cancel his neuro appointment and his appointment with the pediatric opthamologist. Can you believe it!?! We were so excited. I had been hoping that this would be the outcome but I hadn't wanted to dare that it was possible. When I told my mom she burst into tears and just cried and cried (she had been with me for the initial appointment when they said he might be blind). This has been such an emotional ride for the entire family.

This entire journey has taught me a lot of things. The first and most important is to never give up hope. Stephen and I never gave up hope that we would one day have a baby. We never gave up hope when I got sick and Perron was early. We never gave up hope when Perron was in the NICU. And even when things were at their hardest and I was at my lowest, I tried as hard as I could to hang on to hope even when I felt like all hope was lost. God has blessed this family and neither Stephen or I will take the little things for granted. Four months is a long time to wait for your baby to look at you and recognize you, but it makes it all the more worth it when he does. Now he will look at us and smile and he even laughed at me this evening. Truly music to this mommy's ears. We are forever grateful to all the friends, family and strangers who have taken this family under their wings and prayed for us. We appreciate it more than you will ever know. We hope this is the last time that kind of urgent prayer request ever has to go out on behalf of our family.

We continue to enjoy Perron more everyday. He has grown and changed so much in these past couple of days. His adorable personality comes out more every day. He finally weighs over 10 lbs (10 lbs 3 ozs to be exact) and is starting to get so strong. He is rolling over from his stomach to his back consistently now and can sit up if you really support him well through his trunk. We have lots of exercises that the therapist gave us to do in between sessions and it is amazing how much they help.

Thank you again for all of your love and support. We are blessed beyond measure!

Monday, November 30, 2009

A Perron Picture Post

I love taking pictures of my baby. I love sharing these pictures with everyone. I HATE uploading pictures in blogger. It takes forever and I still have not figured out how to make my commentary on the photos line up correctly. It drives me insane that the order in which you upload does not match the order that they magically appear on your blog and I can not stand that it always loads them to the top of the post. I am constantly cutting and pasting things all around.

In all of my free time(don't hold your breath on that one) :), I am going to try and figure out the formatting HTML better. I have seriously considered getting someone to professionally design my blog for me. I love doing it so much and love that I am starting to accumulate a small (but very loyal) follwing, so I want it to look better than it does right now. Again, don't hold your breath on this one. I barely can keep my head above water as it is. Work is insane right now with planning for a major client being pushed up this year. I have to travel next week for three days and hubby will be home all by himself with Perron during that time. Wish us all luck. Luckily Stephen is such a hands on dad, I know that he will be able to handle everything in stride.

Okay, enough of my ramblings, let's get on to the real reason you guys are here. Here are some adorable pictures from the life of Perron. If I had the time and the energy to devote to putting these in the right order and commenting on them, I would tell you what each picture was...but I don't. These are random assortment from my siblings visiting for early Thanksgiving, some adorable picture of a sleeping baby, pictures from real Thanksgiving, and some random Super Baby pictures...all in no particular order. ENJOY!

We Live Amongst Proof

I am acutely aware of the fact that we live among proof that God is with us in our times of need and that he listens to our prayers. We have a little bundle of proof that lives under our roof. I had been so discouraged at the beginning of last week by Perron's vision situation, that I had almost resigned myself to the fact that we would be looking at worst case scenario. I hate to admit, but I am a "prepare for the worst, be happy if the worst doesn't happen" kind of person. I wish I wasn't, it is one of my true personality flaws, but I can't help it. Well lo and behold, Perron decided to use Thanksgiving as his day to prove that God truly is with our family. I started to notice on Thanksgiving some improvements in his vision abilities. He was not just looking at us, but initiating eye contact and holding gazes for sustained periods of time. These are things he never used to do. He also was tracking his toys. Prior to Thanksgiving he only wanted to track large moving objects that were at a distance. I was so excited, but I wanted to exercise a little bit of caution since I knew that transient vision was a hallmark of CVI. Well guess what, he has continued to do all of these things and more since Thanksgiving. Something to truly be thankful for. Stephen and I both are very encouraged that our prayers might be answered and this could just be a developmental delay. We have a consult with a vision therapist through Hand in Hand, our early intervention service provider, on December 14th. I am secretly hoping that she will say he is doing so well that we can cancel all of the tests with the neuro-ophthalmologist. Wouldn't that be awesome!

Thank you so much to everyone who has prayed for us. Please continue because it is working and we truly are seeing results. I am going to try to post again some adorable pictures from the past few weeks.

Tuesday, November 24, 2009

Days Like This

This is the title to one of my favorite Van Morrision songs and describes my life in a nutshell recently. Except in my case it would be minutes or hours or days like this. I must admit that I have been on quite the emotional roller coaster since our eye appointment last Friday. One minute I am in the pits of despair imagining the worst and then he will look at me or track a toy and I will be rocketed to the highest of highs only to find myself in a free fall a minute later when he then acts like I am a ghost. For instance, today I came home from lunch crying because I was just so overwhelmed by everything and when I got home my mom was holding Perron and he was so precious and interacting so well and my worries momentarily went away. I just wish that one of the hallmarks of CVI was not that their vision appeared minute fine,the next minute gone. It is torture trying to determine if he is making improvements and he is just progressing slowly or if it is just the in and out quality of CVI vision.

For those of you who do not know me, I am both a control freak and a knowledge seeker by nature. So my way of feeling in control of this situation is to try and learn as much as I can about CVI. I have read medical journal articles, I have read blogs, I have contacted vision therapists, I have reached out to special education professors who specialize in training teachers for the visually impaired, I have emailed mom's who have children who have this diagnosis. I have done everything I can to arm myself with knowledge. I have to be prepared if I am going to be able to advocate for the kind of care Perron needs. I truly believe that we have caught this early enough and that is brain is malleable enough that intervention at this stage is critical. Although we have to wait until December 23rd for the testing, I want to make sure that not one minute of that wait is wasted and that we are prepared to move if the diagnosis does turn out to be CVI.

Obviously I pray that I will never need all of this information I have accumulated. I pray that I can go back to only having to worry about the normal mom stuff. I will admit in my lowest moments my mind does wander to the what if's....what if he never is able to see.... what if he can't live on his own when he grows up...what if kids are mean to him because he is different.....but I quickly snap myself out of it. I can't focus my energy on that. Worrying about what if's like that will do me no good at this point...or ever for that matter. In my moments of weakness, I question God. Why has he made this journey so hard for us, what did we do to deserve this kind of heart ache, is he trying to tell us that we never should have had children in the first place. I have lived under constant stress for too long...the stress of infertility, the stress of a very difficult pregnancy, the stress of having Perron be premature and in the NICU, the stress of him being a difficult baby, and now the stress of being faced with a child with the potential of a life-long disability. However, I know that rather than question God, I have to trust. I have to trust that he is with us, walking this journey alongside us. I have to believe that he has plans for us that I might not understand right now. Trust that he has the ability to heal Perron and heal my hurting heart. I have said this before and I will say it again. I believe in miracles. God has proven that he listens to our prayers. I hold proof of that in my arms every day. I have to believe that he will listen to our prayers one more time and know that he alone can carry us through this dark time.

Like Van Morrision said, "I just have to remember there'll be days like this."

Saturday, November 21, 2009

Cortical Blindness

Hi guys!

I found this article on the Boston Children's Hospital website and it gives a very good description of what they are afraid Perron has. It is called cortical blindness or cortical visual impairment. A lot of the description of behaviors that children with this condition exhibit are the same behaviors we have been noting in Perron and were noted by the optometrist yesterday. I thought this might be helpful in describing what could be facing in a relatively easy, less medical-speak kind of way.

Presently, Cortical Visual Impairment (CVI) is the most common cause of permanent visual impairment in children (1-3). The diagnosis of CVI is indicated for children showing abnormal visual responses that cannot be attributed to the eyes themselves. Brain dysfunction must explain the abnormal visual responses, as abnormal ocular structures, abnormal eye movements, and refractive error do not. Fixation and following, even to intense stimulation, may be poor and the child does not respond normally to people's faces. Visual regard and reaching (in the child with motor capabilities) toward objects is absent.

Causes of CVI
It is now widely accepted that "cortical blindness" is not an appropriate diagnostic term for children with early, acquired visual impairment due to non-ocular causes (4). The term "cortical" is misleading because the visual impairment is due to abnormality of bilateral. post-chiahydrocephalus shunt failure, se smal visual pathways, including damage to cortical (gray matter), subcortical (white matter) or both. Non-anatomical lesions, for example, seizures, metabolic derangements, also can cause CVI.

Thus, "cerebral visual impairment" is preferred to "cortical blindness." Common causes CVI in infants and young children include hypoxic ischemic encephalopathy (HIE) (in the term born infant), periventricular leukomalacia (PVL) (in the preterm infant), traumatic brain injury due to shaken baby syndrome and accidental head injuries, neonatal hypoglycemia, infections (e.g. viral meningitis), vere epilepsy, and metabolic disorders (5).

Other causes include: antenatal drug use by the mother, cardiac arrest, twin pregnancy, and central nervous system developmental defects (5). Accompanying features of CVI include cerebral palsy and developmental delays.

Confusing diagnostic entities include: delayed visual maturation (6), autism spectrum disorders, severe bilateral central scotomata (with eccentric fixation), dyskinetic eye movement disorders (7) and profound mental retardation.

Eye examination findings
The eye examination may show anomaly of the optic nerves (paleness, large cups) that, however, is not severe enough to result in the visual impairment exhibited by the child. Strabismus is common; nystagmus is less common. Pupillary reactions are usually normal. High refractive error corrected by glasses may improve some visual behaviors and should be tried if present (2, 8, 9).
# The most common CVI symptoms presenting to the ophthalmic clinician are: Abnormal light response - light gazing OR photophobia
# Blunted or avoidant social gaze
# Brief fixations, intermittent following
# Poor visual acuity
# Visual field loss - generalized constriction, inferior altitudinal, hemianopic defect Behaviors
Behaviors reported by parents, teachers and low vision specialists include:

* Variable or inconsistent visual responses to the same stimuli
* Better responses to familiar than to novel stimuli
* Fatiguing from visual tasks
* Peripheral vision dominates when reaching
* Colored stimuli elicit better responses than B&W stimuli
* Visual attention for moving stimuli is better than for static stimuli
* Vision for navigation is unexpectedly good
* Difficulty seeing an object or image in a "crowded" array or a busy background
* Reduced responses to visual stimuli when music, voices, and other sounds are present, and often, when the child is touched.

All or most of these behaviors are not observed in individual children with CVI. Conversely, a child showing only one or two of the behaviors above does not indicate CVI.

Parents are most disturbed by the child's lack of social gaze and direct eye contact. Active avoidance of or withdrawal from unfamiliar visual stimulation, including people's faces, is frequently reported. Tactile stimulation may be avoided by the child, while in others, touch may be utilized in preference to vision. Commonly, the child positively responds to voices and music. Therapists and teachers are rightly concerned about the child's reaching without looking at the object or the hand.
Visual development
Partial recovery of vision in many children with CVI and severe visual impairment occurs. Improvements are seen in visual acuity, orienting to peripheral stimuli, attention to and reaching for objects and for social gaze. Effective management of intractable seizures often results in improved visual behaviors (personal experience).

Clinical evaluation and monitoring
In addition to the complete eye examination, objective measures of visual abilities should be done where feasible. Visual acuity is measurable in most children with CVI using large, black and white gratings (stripes) presented using preferential looking tests (15-17), or using cortical visually evoked potentials (17-19). Acuity may be very poor in infancy and remain so. In others there is gradual improvement in acuity. In most children with CVI, acuity does not reach normal levels. And, when measurable, recognition acuity for pictures, symbols or letters may be much poorer than the acuities previously measured for gratings. Glasses should be given if warranted, as visual abilities may improve, surprisingly so.

Visual field abnormalities are much more common in children with CVI than realized probably because of the difficulties in assessing peripheral vision in children with poor fixation, poor orienting, and visually avoidant behaviors. Certainly, in individuals with diffuse, extensive lesions of the posterior visual pathways, visual field defects would be expected. Inferior field defects, often dense and complete, are seen in patients whose CVI is attributable to HIE or to PVL (20, 21).

Visually guided responses, especially reaching and environmental scanning, should be interpreted in the context of the child's visual field status. Referral to a pediatric low vision specialist for further evaluation may be helpful.

Rehabilitation and education
In all children with cerebral visual impairment, services of trained and experienced teachers are very important for the child's development and education: See the American Printing House for the Blind CVI website and Linda Burkhart's Technology Integration website

Referral of the child with CVI to state services for visually impaired children should be done promptly after diagnosis. Specific recommendations based upon the clinical measurement of visual abilities, such as visual acuity and visual fields, should be provided to parents, therapists and teachers. Teachers of visually impaired children should assess broader, "functional" visual behaviors and, often in conjunction with other therapists, devise interventions appropriate for the specific needs of the child (11, 14, 22, 23). Appropriate additional support services for the school aged child, including for non-verbal learning disabilities, will be needed.

In children with visual field defects, visually guided mobility and spatial orientation can be expected to be impaired. Evaluation and instruction by a certified orientation and mobility instructor should be provided when the child is independently mobile.
Conceptual framework for understanding the visual difficulties in CVI
Understanding the basis of complex visual difficulties of children with CVI may be aided by description of the specific problems associated with lesions in specific areas of visual association areas of the brain in adults (21, 24, 25):

1. Visual motor disturbances, as in moving the eyes to direct visual attention to an object, fixating on an object of interest, shifting fixation and gaze to a new visual stimulus, and accomplishing fine motor tasks such as copying a drawing, are associated with posterior parietal (-occipital) lobe lesions. These are considered due to damage to the "dorsal" visual association pathway.
2. Visual spatial disturbances, as in localization of objects, judgment of direction and distance of objects, and orienting the body in relation to the physical world (the "Where is it?" aspect of vision), are associated with posterior parietal (-occipital) lobe lesions (also "dorsal" pathway).
3. Visual perceptual disturbances, as in discrimination, recognition, and integration of visual images and objects (the "What is it?" aspect of vision), are associated with inferior posterior temporal lobe lesions (due to a different visual pathway, the "ventral").

Brain damage in children with CVI is more diffuse than in adults with the specific difficulties indicated below. Thus, children with CVI may show more than one of the specific domains of visual impairment (for example, both dorsal pathway difficulties - visual motor and visual spatial). During early development, visual motor disturbances are more evident than at later ages. Aspects of abnormal reaching and visual avoidance may be affected by abnormal sensory integration and motor output difficulties. In some children with minimal visual acuity loss, specific difficulties in visual perception or in spatial orientation become more evident as they mature. Specific visual cognitive dysfunctions are common in children with traumatic brain injury (personal experiences).

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2. Good WV, Jan JE, DeSa L, Barkovich AJ, Groenveld M, Hoyt CS. Cortical visual impairment in children. Surv Ophthalmol 1994;38(4):351-64.
3. Steinkuller PG, Du L, Gilbert C, Foster A, Collins ML, Coats DK. Childhood blindness. J Aapos 1999;3(1):26-32.
4. Hoyt CS. Visual function in the brain-damaged child. Eye 2003;17(3):369-84.
5. Good WV, Jan JE, Burden SK , Skoczenski A, Candy R. Recent advances in cortical visual impairment. Dev Med Child Neurol 2001;43(1):56-60.
6. Fielder AR, Mayer DL. Delayed visual maturation. Sem Ophthalmol 1991;6(4):182-93.
7. Jan JE, Lyons CJ, Heaven RK, Matsuba C. Visual impairment due to a dyskinetic eye movement disorder in children with dyskinetic cerebral palsy. Dev Med Child Neurol 2001;43(2):108-12.
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Friday, November 20, 2009

The Begining of Yet Another Journey

So today has been a hard day. As those of you who follow the blog will recall, we have been noticing some eye issues involved in Perron's developmental delays since his two month well baby appointment. Well those issues led to us being evaluated for early intervention, and led early intervention to send him to the Eye Care Center at UAB. We saw a pediatric optometrist this morning.

I should have known right away that something wasn't right. UAB is a teaching hospital so we had a 4th year student and a 1st year student doing the initial exam. The first year took our history and I am giving her our long and sorted story of pregnancy and post-birth complications. The fourth year student came in and started trying to give Perron an eye exam. Yeah...good luck with that. They have all of these visual stimuli that they are trying to get Perron to look at. They started with a little tiny blinking star that they were trying to make him follow. In my head, I was thinking this is never going to happen. Of course I was right, and he absolutely refused to look anywhere near the star. So then they try some other test...nothing. So then they pull out these huge card that have really big black and white patterns on one side and are just plain gray on the other side. In the middle of the card is a little tiny hole. The fourth year student is looking through the hole, while the first year student is supposed to tap on the shoulder of the side Perron is looking at. Well guess what.....he did not look at the card even one time. So the fourth year student says, hold on, let me go get my attending physician. Dum...dum...dum...dum. That is when I knew that my day was not going to be as I had hoped.

The attending comes in and she tries doing all these tests and is looking in Perron's eyes with all of these special instruments and taking pictures etc, etc, etc. They dilate Perron's eyes and do someone tests and look at them some more with special instruments. While all this is going on, her assistant is bringing in all of these papers and talking about when appointments were available with all these different people. I actually thought they were talking about someone else, but unfortunately they were talking about us. So here is the gist of what we know. There is definitely something wrong with Perron's eyes. That is one thing everyone can agree on. Unfortunately that is were the information ends. She said that it could just be a really bad developmental delay and we were right on the cusp for when the neurons that send information to the occipital cortex come in. However, I asked her point blank if my baby was blind and she could not say yes or no. Not very comforting at all. Here is what we do know. He can is not like he lives in a world of total darkness. We just aren't sure if his brain can process what he can see. For instance, we know for sure that he can detect movement. He LOVES looking at our fan more than life itself. The good news is the type of vision that detects motion usually comes in first. The bad news is that the area of the brain that processes that type of vision is not the same area of the brain that processes information that gives you the ability to understand what you see. Luckily the one piece of information we were able to take away from today is that structurally his eye is normal and he does have the physical ability in his eye to see.

So where does this lead us. unfortunately it leads us down another road of seeking more answers to more questions. On December 23rd, we have an appointment with a neuro-opthamologist at UAB. He is going to conduct two different tests. One that detects visual activity at the retinal level and then a second one that detects activity in the occipital cortex. The first test involves putting sensors in between his eye ball and his eye lid and doing some kind of testing. the second involves hooking him up to an EEG and testing brain activity when visual stimulation is made. This will help us determine if there is brain damage or some other kind of neurological issue that is impeding his ability to process visual stimulation. After that appointment, we are supposed to see the head of the Department of Pediatric Ophthamology at UAB on January they are bringing in the big guns. do I feel about all of this....scared, nervous, shitty, curious, worried...all of the above. I was very hopeful that we were going to get some answers today. Instead I was told that we have a very complicated case. His prematurity and IUGR, my use of brethine and clindamyacin (for the Group B Strep) only complicate an already very complex puzzle. I am scared because I don't know if she knew that something was majorly wrong and that is why we are having to see two very big doctors and she didn't want to tell me. I am scared that my baby will never be able to see and lead a normal life. I am scared that we are going to have the tests and I am going to hear the words your baby is blind. I am scared that we will do the tests and they still will not be able to give us the answers we are looking for. I am scared. I am overwhelmed. I am jealous. I am jealous of all the mother's out there with "normal" babies. I want to play with my baby and have him play back. I want to look at my baby and have him look back. I want to come into a room and have my baby look at me. And I am scared that I might never have those things. I am tired. i am tired of having to turn every interaction with him into an evaluation. I want to be able to sit with him and play with him like a normal mom and not have to be constantly noting in my head what he is or is not doing and wondering whether that is normal. It is exhausting. It really is just a lot to take in at one time. I can't imagine having to wait another five weeks for answers. The doctor we saw today said she would personally email the doctor performing all of the testing and see if there is any way they can move the appointment up. We will cross our fingers.

Okay, so I have some very specific prayer requests. First, please pray for Perron's eye sight. Right now, best case scenario, we are looking at just a developmental delay. Please pray that that is all this is and that he is not blind. Second, please pray for all the doctors treating Perron that they will have wisdom and guidance in knowing what is wrong with him and the best way to treat him. Third, please pray for Stephen and I. I can't even begin to describe what it feel like when you are told your baby might be blind. It is not something I would wish on my worst enemy. please pray for strength, courage, wisdom, and comfort as we start this journey. Please, please, please pass these prayer requests and our story on to anyone you know who might join in praying for Perron.

We love you all and we thank you for your continued love, support, encouragement, and prayers.

More Questions than Answers

I can not post everything we learned today right now, but I know a lot of people were going to be checking this to find out how our eye appointment went today. Unfortunately we left with more questions than answers and two additional appointments with pediatric of which is with Dr. Cogan, the head of the Department of Pediatric Opthamology at the University of Alabama Birmingham. They basically said it could be anything from a developmental delay to blindness. Not exactly what you want to hear as a mother. Please please pray for us. I will post more details and specific prayer requests when I get a chance tonight.


Wednesday, November 18, 2009

4 Months

Dearest Perron,

Oh my godness where has four months gone? I was thinking just tonight that I can't believe that four months and one day ago I was frantically running around the house trying to get my bag packed for the hospital. No one had told me yet that I was sick and you were not doing well and that I would be having you that weekend....I guess it was my first taste of mother's intuition. Four months ago today you came into this world kicking and screaming and life not been the same since. Your daddy and I look at you every day and are amazed that we created something as beautiful, precious, and special as you are. I know every parent says this, but you truly are the light of our lives.

You are tipping the scales at 9 lbs 7 you are getting close to six pounds heavier than your birth weight. You are VERY long, so you are starting to grow out of some of your newborn clothes in length. WE put you in your 0-3 months clothes and you look like a little bag in them. You have graduated to level one diapers, so that is already up two sizes since you were born. You are finally getting big enough to sit up like a big boy in your stroller without having to be in the carseat. I took you for your first walk like that yesterday and you loved being able to face forward and look around.

We are amazed every day at how strong you are. You have gotten so good at holding your head up. One of your favorite games is Super Baby. You will grab on to our fingers and hold your arms in very tight to your body and want us to pull you up to standing position. Once there you either want to be hoisted into the air above our heads or you had to jump up and down while mommy chants "super baby, super baby, super baby". Every morning when I get you up I sing a little good morning song to you that goes "Good Morning, Good Morning it's time to rise and shine. Good morning, good morning sweet baby of mine." You still aren't very good at locating where the sound is coming from, but as soon as you hear my voice you get the biggest smile on your face. It melts mommy's heart.

One of your absolute favorite activities is staring at the fan in mommy and daddy's bedroom. You are completely fascinated by it. Every morning when we are getting ready for work we put you in your boppy pillow on our bed. Daddy then plays the fan magician and turns the fan on and off for you. You think this is HILARIOUS and will squeal and laugh and smile at it. You also now like to give kisses. If anyone puts their face up to yours, you automatically turn and give them a huge open mouth kiss. If someone kisses you, you turn your face to them and plant a big wet one on their cheeks. Mommy and Daddy love it.

It truly is amazing how fast you grow and what a big boy you are becoming. We have blinked and four months has already gone by. We love watching you grow, learn and change. These have been the hardest, but best four months of our lives.

We love you more everyday!

Mommy and Daddy

Tuesday, November 17, 2009

Have You Hugged Your Preemie Today?

Today is National Prematurity Awareness Day sponsored by the March of Dimes. Today is a day to fight for Perron and the other 534,000 babies that are born premature each year. I guarantee that it is not a club that any of the mother's of those half a million babies wanted to be in, but through our worry and our sorrow we have gotten to witness the fighting spirit of our little miracles. One of the most frustrating things about prematurity is that in most cases doctors do not know why these babies come too soon. And even in cases like mine where they technically know why Perron came to soon, they don't know what causes pre-eclampsia and why some of those cases become severe and develop into HELLP syndrome. I had absolutely no risk factors that would lead anyone to believe that I would be at risk for the disease.

These babies that are born too soon are born with a fighting spirit. Being born premature is the single most important cause of death in children under the age of one....pre-term births account for over 50% of mental disabilities...250 babies are born prematurely every 10 minutes. The statistics on late term preemies, while better than babies born before 32 week, are still grim. According to the March of Dimes, late term preemies are:

* 6 times more likely than full-term infants to die in the first week of life (2.8 per 1,000 vs. 0.5 per 1,000)
* 3 times more likely to die in the first year of life (7.9 per 1,000 vs. 2.4 per 1,000)


"A recent study, found that late preterm infants are more than 3 times as likely to develop cerebral palsy and are slightly more likely to have developmental delays than babies born full term (18). Another study found that adults who were born at 34 to 36 weeks gestation may be more likely than those born full-term to have mild disabilities and to earn lower long-term wages".

Sobering statistics for any parent to have to face. Take all of the typical worries that a first time mom faces and add to that the additional worries associated with prematurity and it can be a lot to take.

We are blessed that Perron has done as well as he has. Yes he has some issues. Yes it has been a harder road for Stephen and I than we imagined. Yes it has been scary. Yes it has been stressful. Yes it is hard for people to understand what you are going through. Yes it is hard to have to be a constant advocate for your child. Yes has been totally worth it.

These babies are born with fighting spirits. They have to, they need them to survive, thrive and beat the odds. Perron was willing and able to fight for us and I will spend every day for the rest of my life fighting for him in whatever way I need to. He's worth it.

Friday, November 13, 2009

Early Intervention

We had our evaluation with Early Intervention this morning. The case manger and physical therapist were nice enough to come out to our home so we didn't even have to worry about going anywhere. I had called my pediatrician a few weeks ago and let her know that I was having some concerns about some developmental delays I was noticing with Perron. He was/is having a really hard time with some visual aspects of development-tracking in particular, as well as issue with sound location. My pediatrician said that due to his prematurity it was probably best to go ahead and see if he qualified for early intervention services, since in these kind of circumstances the earlier we start getting him help the better off he will be.

For those of you that don't live in the land of prematurity, early intervention is a state run service where they provide free therapeutic services to children that show a 25% or greater developmental delay in several core developmental areas. The therapist and case manager took Perron through two different tests. The physical therapist used the Peabody Developmental Motor Scale to help determine Perron's fine and gross motor skills. The case manager used a test that i think was called IDA (don't know what it stands for). The bottom line is that Perron does qualify for early intervention services. His inability to track object, his trouble with eye contact, and his inability to locate sounds were all reasons for concern and put him in the 1 to 2 month range developmentally (he is 4 months actual, 12 weeks adjusted). They also noticed some issues with increased tone and with him keeping his little hands in a fist all the time. Increased tone basically means he is a little more rigid than a baby his age should be. She said these could just be transient issues (and I was very strong and muscular as a baby) or they could be markers for a larger problem. Because of his prematurity he is at an increased risk for cerebal palsy, but they do not think that is an issue...he is just exhibiting a couple of markers for it.

He will start meeting with a physical therapist once a week and when he gets a little older they will add in occupational therapy as well. they have set us up with an appointment at the UAB Eye Center with a specialist in pediatric opthamology. We will see them next Friday. We will also be working with a specialist at the Alabama School for the Deaf and Blind. They assured me not to get freaked out by the Alabama School for Deaf and Blind part...they do not think he is either deaf or blind....that just happens to be who the lady is contracted through. He qualifies for these services for up to 3 years and at a minimum for one year. At his one year marker, we will do another assessment to determine whether we need to continue on with therapy or not. As I mentioned all of these services are free to us.

We of course would prefer that Perron was developing normally and not showing any signs of delay; however, since he is showing delay, we are very pleased that we have gotten this caught at the earliest possible point. We will take it one day at a time as we have with all of the challenges we have faced.

Monday, November 9, 2009

Splish Splash Perron's Taking a Bath

This little boy loves absolutely nothing more than bath time. It is his favorite part of the day and the kick off event for his bedtime routine every night. Sometimes he is a kicking and splashing maniac and other times he will just lay there and fall asleep. Depending on how tired he is. We got a new camera recently and the pictures were too cute. Enjoy the photo documentary of Perron's bath time routine.

Saturday, October 31, 2009

Happy Halloween!

Happy Halloween from our little treat!

Monday, October 26, 2009

A Busy Weekend

Perron's social calendar was quite full this weekend. He got to experience his first trip to Tuscaloosa for tailgating for the Tide. He and I rode over with Stephen and hung out on campus and then drove back while Stephen went to the game. He looked so adorable decked out in his Alabama gear. It was FREEZING cold, so he was dressed like he was headed to the North Pole. Truth be told he basically slept through most of his first game day experience, but we are not too concerned since this will be the first of many Alabama football experiences.

On Sunday we went down to Kate's farm for ML's bridge clubs annual Halloween party. Every year they hold a big halloween party for all of the bridge club (Read: wine drinking cards have been played in like 20 years) ladies and their families-kids and grandkids include. We are ML's honorary kids and this year she even had an honorary grandbaby to show off. Perron had the BEST time and I could totally tell that he was eating up all of the attention he was getting. The ladies were going crazy over him and he was crazy for the ladies. It was an absolutely beautiful day and we got some great pictures. We are already looking forward to next year!

How I spent the majority of my first tailgate

Brr it's cold outside

In front of Denny Chimes

On the steps of the library


AT the tailgate before I get bundled in my gear

Watching Game Day with daddy

Daddy and I discussing our game strategy

Pondering whether Alabama was going to win

Decked out in his game day wardrobe

Who could resist this face

Stephen and ML

Mommy and ML at the barn

Thursday, October 22, 2009

A Perron Picture Post

So I was reading back through the blog today and I realized that I had done a lot of blabbing on and hadn't posted many pictures of Perron recently. Now I know that while I am witty, I am very confident that that is not what keeps bringing you back here. So here is a photographic record of Perron's recent adventures in babyhood. Enjoy!

Sitting in my mommy's lap wearing my cute owl outfit.

With daddy at his birthday celebration at Grandma and Grandpa's

With mommy before she heads to work.

Lounging in the big boy bed.

Getting ready to cheer on Alabama!

Bath time is the best time....for sleeping!

Tuesday, October 20, 2009

3 Months Old

Dear Perron,

We can not believe that you are already three months old. It is so hard to imagine that this summer we had you and now the seasons have already changed and it is fall. It is amazing how fast the time goes by. We have had so many troubles with your poor little belly, but we think we might be starting to get it figured out. We have switched your formula to another brand of Amino Acid based formula and it has finally helped your tummy troubles! Of course it is even more expensive then the Ele-Care ($40 a 14 oz can), but mommy and daddy can't blame you for liking more expensive things. You are just like us, once you try the nice stuff you never want to go back :). Since we have gotten your tummy troubles worked out you have much more time to be your happy adorable self. Your current new favorite toy of all times is the activity gym your Aunt Meggy sent you. You love to lay on your mat and look at the toys and the special light machine that is on it. You have discovered that you are just as cute as everyone says you are and you now love looking at yourself in the mirror. If I was as cute as you I would like to look at myself all the time too!

You are still super tiny. You are weighing in at 8 pounds 3 ounces. You are still squarely in your newborn diapers and even some of your newborn clothes are still big on you. The doctor is a little concerned that you are not gaining weight faster so he has done a bunch of tests. We are waiting to hear back on those results. We are hoping that the results will just show that you have a high metabolism like mommy and daddy and nothing more serious. You have turned into an excellent sleeper and will now sleep 8 to 9 hours in a row which is such a change and it is hard to believe that in five to six short weeks we have taken you from sleeping 45 minutes in a row to sleeping 8 hours in a row. It is a much needed relief, especially since mommy went back to work last week. It was very hard to leave you, but we know you are in good hands with Grandma. Mommy is blessed because she loves her job...and she needs it to pay for your $40 a can formula.

You continue to be the light of our lives. We love to see your smiling face every morning when we wake up and hold you tight every night before you go to sleep. We have learned in this journey how quickly this time goes by and how fast you grow up. We know that you will not be our little tiny baby much longer and we savor this time with you. When you let us hold you and snuggle and sleep in our arms. We want to remember the sweet smell of your little baby breath and the downy softness of your little head because we know that in such a short amount of time you will be our bundle of energy little boy who will not have the time to let us hold you so close. We can not wait to see the little boy you are going to grow into being, but we can not bear to loose the sweet baby moments that we share with you right now. These moments go by far too fast!

We love you more everyday!
Mommy and Daddy