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."

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).
Symptoms
# 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).
References

1. Flanagan NM, Jackson AJ, Hill AE. Visual impairment in childhood: insights from a community-based survey. Child Care Health Dev 2003;29(6):493-9.
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.
8. Huo R, Burden SK, Hoyt CS, Good WV. Chronic cortical visual impairment in children: aetiology, prognosis, and associated neurological deficits. Br J Ophthalmol 1999;83(6):670-5.
9. Afshari MA, Afshari NA, Fulton AB. Cortical visual impairment in infants and children. Int Ophthalmol Clin 2001;41(1):159-69.
10. Hoyt CS. Neurovisual adaptations to subnormal vision in children. Aust N Z J Ophthalmol 1987;15(1):57-63.
11. Baker-Nobles L, Rutherford A. Understanding cortical visual impairment in children. Am J Occup Ther 1995;49(9):899-903.
12. Jan JE, Wong PK , Groenveld M, Flodmark O, Hoyt CS. Travel vision: "collicular visual system"? Pediatr Neurol 1986;2(6):359-62.
13. Porro G, Dekker EM, Van Nieuwenhuizen O, et al. Visual behaviours of neurologically impaired children with cerebral visual impairment: an ethological study. Br J Ophthalmol 1998;82(11):1231-5.
14. Morse M. Visual gaze behaviors: considerations in working with visually impaired multiply handicapped children. RE;view 1991;23(1):5-15.
15. Birch EE, Bane MC. Forced-choice preferential looking acuity of children with cortical visual impairment. Dev Med Child Neurol 1991;33(8):722-9.
16. Hertz BG, Rosenberg J, Sjo O, Warburg M. Acuity card testing of patients with cerebral visual impairment. Dev Med Child Neurol 1988;30(5):632-7.
17. Weiss AH, Kelly JP, Phillips JO. The infant who is visually unresponsive on a cortical basis. Ophthalmology 2001;108(11):2076-87.
18. Frank Y, Kurtzberg D, Kreuzer JA, Vaughan HG, Jr. Flash and pattern-reversal visual evoked potential abnormalities in infants and children with cerebral blindness. Dev Med Child Neurol 1992;34(4):305-15.
19. Good WV. Development of a quantitative method to measure vision in children with chronic cortical visual impairment. Trans Am Ophthalmol Soc 2001;99:253-69.
20. Jacobson L, Hellstrom A, Flodmark O. Large cups in normal-sized optic discs: a variant of optic nerve hypoplasia in children with periventricular leukomalacia. Arch Ophthalmol 1997;115(10):1263-9.
21. Dutton GN. Cognitive vision, its disorders and differential diagnosis in adults and children: knowing where and what things are. Eye 2003;17(3):289-304.
22. Hyvarinen L. Visual rehabilitation of the infant and child. In: Hartnett WE, ed. Pediatric Retina. Philadelphia : Lippincott, Williams & Wilkins; 2005:493-514. 23. Morse MT. Cortical visual impairment in young children with multiple disabilities. J Visual Impair Blind 1990;84:200-3.
23. Girkin CA, Miller NR. Central disorders of vision in humans. Surv Ophthalmol 2001;45(5):379-405.
24. Trobe JR, Bauer RM. Seeing but not recognizing. Surv Ophthalmol 1986;30(5):328-36.

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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 see...it 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 5th...so they are bringing in the big guns.

So....how 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 opthamologists...one 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.

Love!!!

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 ozs...so 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

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)

and

"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.

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.

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.