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

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 what...my 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!

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.

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!

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.

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 transient....one 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."