Life with Cooper-Part 6: When Dreams and Reality Collide...

For My thoughts are not your thoughts, Nor are your ways My ways," says the Lord. "For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts.   Isaiah 55:8-9


I believe I speak for Mommies everywhere when I say that from the moment we find out we are pregnant, we immediately begin to envision our child. Girl or boy? Blue eyes or brown? Towhead or a head full of dark hair? And then, if we choose to find out the gender, our imagination goes into overdrive! Prom dresses and wedding dresses or maybe football uniforms and baseball uniforms. Ballet slippers and tutus or shotguns and fishing poles. Skinned knees, braces, first dates, first broken hearts. As we waddle around and rub our ever growing bellies, we dream and we plan. We picture the first day of school, high school graduation, and going off to college. As we feel those first tiny little kicks, we are imagining all the places those little feet will go. All the adventures those little feet will run to. Oh yes, we see our child as we want him or her to be: perfect, beautiful, healthy, happy, talented, successful...So what happens when your reality doesn't quite match all those hopes and dreams? What do you do when the child you have will never be the child you believed he or she would be? What then?

As Cooper recovered from his surgery and his physical issues stabilized, it became all the more apparent that his cognitive function was no where near where it ought to be.  We had hoped that as he got stronger physically, he would catch up on his milestones: sitting up, learning to stand and walk, speaking. None of that happened. He would not walk at all, not even with assistance. His eye contact was all but gone. He seemed not really to know who we were. He showed no recognition of anyone, not even me and Scott. He had little to no facial expressions. It was frightening and disturbing to say the least.

We were concerned he might be deaf. On the 4th of July right before his 1st birthday, we were preparing to set off fireworks. I had Cooper in my arms and had stepped back from the crowd, prepared to take him inside. I was afraid all the loud noise would upset him. When the first big bang sounded, Cooper did not react at all. He didn't cry, he didn't even startle. One after another, the fireworks went off and still no reaction from Cooper. We shouted his name, clapped our hands, blew whistles right behind him. Nothing. Unless he could see you, he gave no indication that he could hear you. Alarmed, I contacted his pediatrician who quickly got us set up to see an ear, nose, and throat specialist. Cooper was seen and the first test in the office was inconclusive. His cognitive function was so low that he could not respond consistently to the sounds they were making. A sedated ABR (auditory brainstem response) test was done and found to be completely normal. I was thankful but confused. How could that be? He was too little to willfully ignore people and sounds. It just didn't make any sense.

Cooper had repeatedly suffered with ear infections. By the time he was 14 months old he had been treated for four. That was more than enough to make him a candidate for pressure equalization tube placement. So, for the fifth time, our tiny little guy was sedated for a procedure. It was, without a doubt, the worst! I remember the nurse asking us if we had ever seen Cooper have a "come apart".
"Oh no," I told him. "Cooper never cries." The nurse had tried to warn me, but I was not prepared to see my sweet little boy hysterical and inconsolable. He cried for hours, until the hospital staff gently suggested we take him home. Maybe he would do better once he was in familiar surroundings? We were afraid to put him in the car! We had over an hour drive and we could not calm him down. We finally got through that day, but something nagged at me. We couldn't soothe him. They said it was the quick sedation, but I thought it was more than that. Very soon I would realize just how right I was.

After the incident in the hospital, we began to see Cooper have these terrible screaming fits. When it happened, it would seem as if he were in severe pain. On Thanksgiving that year, we had to take turns walking around with him in the front yard while everyone else enjoyed their turkey dinner-thank goodness it was unseasonably warm! Christmas at my sister's house turned into a nightmare when Cooper began to scream so loud and so hard, I was convinced something was horribly wrong and we would be making a trip to the ER. After what seemed like hours of everyone in the house trying to calm him down, we rushed him to the car, buckled him in his car seat, and within minutes he was completely calm and promptly went sound asleep. I was flabbergasted. We soon realized that there were only three places Cooper was comfortable: our house, my mother's house (he had been kept by her since he was 6 weeks old, so her house was like a second home), and his car seat. Anywhere else and he would scream like he was dying. I remember so clearly taking him to see his pediatrician during that time. Within minutes after getting him out of the car and entering the doctor's office, Cooper started howling. Neither Scott nor I could do anything to calm him down. By the time Dr. Greg walked into the examining room I was in tears. I told him, "I just want to be able to help him, but it's like he doesn't know who I am. You have just as much of a chance of calming him down as we do." Dr. Greg didn't know what to tell me. Eventually this would all stop, almost as quickly as it started. But during that time, I would begin to feel a deep sense of hopelessness. This wasn't right, a mother not being able to console her child. He didn't want me. I had always been able to sing to Cole and calm him right down,  but my voice was just noise to Cooper. No one could help me understand, so I believed it had to be my fault.

I will never forget the day the seizures started. Cooper was 21 months old. I was out of town for work, about 2 hours drive from home. I received a call from my house. My mother was hysterical: Cooper had had a seizure. 911 had been called. I drove like a crazy person to get to him. Both my brother and I had febrile seizures when we were little, so I thought maybe he was sick and had spiked a fever. Cooper didn't have a fever, he didn't even have a cold. The ER doctor at Children's didn't seem too concerned. Cooper was fine by the time we got there. They did a CT scan, which was normal, scheduled us for a follow up appointment with the neurologist and an EEG. The EEG would show a "true seizure disorder". Bilateral, severe seizure activity. He would have his second major seizure just 4 days later. His first of several seizure medications was started. I was stunned and scared. He would be on seizure medicine for the rest of his life.

We were then sent back to the geneticist for more testing. Cooper's seizures were another clue. They now would test him for all the different genetic disorders that included seizures. All came back normal. Next they would try a microarray analysis. This was new: it tested the actual DNA instead of individual chromosomes. We were sure that if Cooper really had a genetic disorder, this test would find the cause. The process was long and expensive. We waited weeks to get the results. They came back normal. I was soooo frustrated. Why could no one tell me what was wrong with my child?!? After we received these results, I was told that 30% of children like Cooper were never diagnosed. There are literally hundreds of different known genetic syndrome and innumerable unknown. I was told that it didn't matter what the "name" of the syndrome was since there is no cure for such things. Cooper's treatment and care would be the same with or without an official diagnosis. I absolutely could not accept that. If my son did in fact have something wrong with him that would prevent him from ever growing up to be a normal functioning person, I wanted to know exactly what it was. I wanted to know how and why. I needed to know. Because deep down, I believed it was my fault. That somehow, I had caused it. Nothing but an actual medical diagnosis along with the cause and a positive prognosis was going to resolve my feelings of guilt.

Ironically, the day when I really came apart was after, of all things, an eye exam. Cooper was holding his head straight back all the time. One of his eyes sometimes turned in and we had noticed that his eyes  sometimes rapidly jerked back and forth. We learned that this is called Nystagmus and the eye crossing is called Strabismus. He could not tell us why exactly Cooper was holding his head back, whether for balance issues or vision. What the doctor did tell us that day, after a long and thorough examination, was that Cooper was legally blind. He did show signs of some vision, but very little. He could give him glasses to help correct the farsightedness that he had, but the majority of Cooper's issue was neurological and could not be treated. Just one more thing to add to the growing list of things that was wrong with our child. And still no answers why.

I would like to be able to tell you that I handled it with grace and poise. That I walked out of that office and turned immediately to my faith, to scripture, to prayer. What I did was exactly the opposite. I got in the car without a word. I turned my face to look out the window as hot, angry tears ran down my cheeks. Scott said something like, "We've just got to pray..." I turned on him, cut him off mid sentence and said, "You pray! I'm done praying! God did this! He's BLIND!" All I could think was "WHY?!? Why would you give me this child?!? I am not equipped to take care of this child! I cannot handle this! Why are you doing this to me?!?"

It would be many long months before I could let go of my anger towards God. I am so ashamed to admit it, but that is the truth. I rebelled against him, doubted his love, his very existence during that time. A lesser god would have struck me dead. I raged at him, refused to speak to him, gritted my teeth at the mere mention of his name. I was angry that my dreams for my son would never come true: He would never play baseball or hunt with his dad. He would never go to school like normal children. He would never go to prom, drive a car, get a job, go to college. He would never get married. One by one, my mind explored all the things he would never get to do, that I would never get to see him do. My dreams did not match my reality. I was mourning the loss of the son that I thought I had given birth to but now realized I never had.

I am thankful that we serve a long suffering, patient, merciful God. I did not deserve it, but he never left me. Not for one minute. Even as I railed against him, he was giving me the strength each day to endure. As I refused to pray to him, others were praying on my behalf. I can't explain the ways of the Lord. His ways are not our ways and his thoughts are not our thoughts. Isaiah 30:18 says, "Yet the LORD longs to be gracious to you; therefore he will rise up to show you compassion". Our God is not a mean, cruel, manipulative God. And in time I would realize that my Cooper was and is the greatest gift God has ever given me.


Cooper at 12 to 24 months:

This one is Christmas 2005. Cooper is 16 months old here. You can see him combat crawling and his eyes are slightly crossed. But still the absolute cutest little guy ever!!

2nd birthday

Prayers Needed for Our Mom

Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. James 5:14-15

Below is a post I composed for my facebook followers this morning. I wanted to share it here as well. We are in great need of prayer.

Mom will have a brain biopsy tomorrow morning at 8 AM at Johnson City Medical Center. As I said before, there are 2 effected areas on Mom's brain: the larger mass is deep. It effects the brain stem, mid brain,parietal, occipital, temporal lobes and the thalamus. It is inoperable. The second area is in the visual cortex, which is closer to the surface. This is the area they will biopsy tomorrow. There is a chance of partial loss of eyesight. Please, please pray protection over Mom's vision. The damage would be immediate and permanent. She was very upset by this. It is going to be quite an ordeal for her. We have to go down tonight because we have to have her at the hospital at 5 in the morning. She has to be put in an MRI machine, which terrifies her- we are asking for her to be sedated for that. After the biopsy, she has to be in ICU for 23 hours. Pray that they will let us stay with her as much as possible.
The thought right now is that this is probably lymphoma. The prognosis for mom will be very poor if it is. There is still a chance that it is something else. Please pray that it is anything besides cancer.
This has been such a long ordeal already and we still just don't know. There is a chance that after the biopsy we may have to wait a week to get a pathology report if they can't tell immediately what it is.
We are begging for prayer for our mother. We need her. Our Dad needs her. She is only 63 years old. I can't stand the thought of losing her. That was the first thought that ran through my mind this morning when I opened my eyes and it feels like a knife in my heart. I just keep thinking, "this can't be happening, this can't be real..." It's like some horrible nightmare you can't wake up from.
I am trying hard to trust in The Lord. I know he knows the need with our Dad. I know Mom is a saved child of God and that he loves her. I know he hears our pleas on her behalf. but I also know that sometimes his will is not our will, his thoughts are not our thoughts. We have to trust his will and cling to his Word, even when we don't understand.
Pray for us kids. This is so hard, watching both our parents go through this. Please pray for peace to settle over Mom. Pray hard that she will not be afraid. Pray protection over her vision. Pray that the biopsy will show anything besides cancer. Please, please pray. Thank you so much. God bless.

Life with Cooper-Part 5: The First Year

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11


Doctors. Health Care Professionals in general, really. We put our faith in them. We look to them for all the answers, and we trust those answers when we get them. We forget that they are just humans, mere mortals who are capable of making a mistake or just plain failing to notice something. We want to believe that they know all things when the truth is, they don't. As a health professional myself, I believed whole heartedly that Cooper was a normal, healthy-albeit premature-baby when we brought him home from the hospital that first day. After all, Cooper had been under the care of the best doctors and nurses in East Tennessee. They had been over all 17 1/2 inches of his tiny body with a fine tooth comb during the 5 day period that he was their charge. Over and over, my mind would return to that train of thought: if there was something to see, they would have seen it. Cooper was fine. Nothing to worry about. Of course there were to be some bumps in the road. He was premature, after all. I would attempt to explain each and every one of the coming events that way, but the reality of the situation would present itself gradually-no matter how hard I tried not to see it.

Feeding was Cooper's first major issue. After I was no longer able to breast feed, Cooper was put on formula. Even before the switch I had noticed cramping and pain after feedings. He continued to have symptoms, so he was changed to lactose free formula. When no improvement was seen, he was changed to a third formula, which caused severe constipation. The next change caused even more pain and added projectile vomiting. With the fifth change came bloody stool, which threw me into a complete panic. My tiny little baby was sick all the time and was having difficulty gaining any weight. All I could do was stay the course, but I was beginning to realize this was not just simply a formula issue.

By the time he was 5 1/2 months old Cooper was on his sixth formula. This one caused rock hard stools which caused an impaction. My sweet boy only weighed 12 pounds after losing 7 ounces over a seven week period from all the vomiting, diarrhea, cramping, etc. At this point he was given the diagnosis of Failure to Thrive (FTT) and referred to a gastroenterologist (finally!).  He was also tested for Cystic Fibrosis via sweat chloride test, which was normal. The GI doctor changed his formula once again and started following his case closely.

Cooper was seen by a pediatric pulmonologist and prescribed respiratory medication for wheezing and other signs of reactive airway disease. His chest x-ray was clear and aspiration was suspected. Cooper was then started on Zantac and tested for food allergies. No allergies were found. The sweat chloride test was repeated to be absolutely sure he did not have Cystic Fibrosis. It was again normal. It was all very frustrating. I was incredibly relieved that he did not have CF but shocked that there were no allergies. Weeks and weeks of doctor visits, half a dozen formulas and a still sickly, weak baby and I was weary that we had yet to find the answer. I was anxious to take whatever action necessary to see Cooper eat without throwing everything up. I was concerned that he was not gaining weight and his physical development had remained below the 3rd percentile.

When symptoms persisted, A gastric emptying scan was ordered. Cooper received a new diagnosis: gastroparesis or delayed gastric emptying. This simply meant that it took an abnormally long time for Cooper's food to make its way through his GI tract. This explained some of the symptoms but not the frequent vomiting. Yet another medicine was prescribed and we were referred to a dietitian to help increase caloric intake to improve weight gain.

It was during the visit with the nutrition specialist that I was made aware that Cooper was microcephalic, meaning that his head was disproportionately small in relation to his body. I knew that he was in the less than 3 percentile in all categories: height, weight, and head circumference. I had not really given it a second thought. He was a preemie with serious feeding issues. I thought he had a cute little head, but apparently it was abnormally small, even under the current circumstances. Small head, small brain. I was a little taken aback. She tried her best to reassure me not to worry. Cooper was referred for a neurological consult. I was quite dumbfounded. How had we gone from feeding problems to a neurology appointment???

Because of his diagnosis of FTT, Cooper qualified for home services through Tennessee's Early Intervention System. They provided services in the home that included one on one visits with a TEIS specialist, OT, PT and Speech. At 7 months old, Cooper could not sit up on his own, crawl or do any of the other things most 7 month olds can do. He rarely smiled or made any facial expressions anymore, although he had at first. He was making no attempts at vocalization. I still believed it was because he was so debilitated from the feeding problems. I was hesitant to accept the services. I didn't want him to be seen as "special needs".  I believed if we could just figure out what was causing all the vomiting (he could barely keep anything down at this point) that he would get stronger and catch up on his own. What made me relent was the fact that Cooper would be in the care of  a co worker's wife. I had met her and really liked her. She assured me that the services could only benefit Cooper and could be stopped at any time if he no longer needed them. Right away, services were established and home visits were started. Even though everyone was super nice that came to our home, it was weird. I was really uncomfortable about it. I didn't think Cooper really needed those services. It seemed like we were almost being dishonest. Surely another child, one who was an actual special needs child with a irreversible diagnosis would benefit from the time and money being spent more than Cooper. Cooper was a normal, healthy baby. This was not permanent. He would be fine...

The day of Cooper's appointment with the neurologist finally arrived. An MRI had been ordered and completed. Cooper's brain, though small, was structurally normal. Cooper was almost 8 months old that day. He had seen several doctors, including a neonatologist and 2 pediatricians, over the course of his short little life.  Each time he was stripped to his diaper, weighed, measured and examined. So when this doctor began to go over Cooper inch by inch I was not concerned. As he was examining him, he began to ask me questions about what genetic testing had been done. I explained he had been tested for Cystic Fibrosis twice but that had came back normal. He then opened Cooper's little hand and pointed to a single straight line that crossed the entirety of his palm. "This is a simian crease. This is Down's." he said in a very thick German accent. I just stared at him. "This is Down's Syndrome. Your son has Down's Syndrome." I couldn't comprehend what he was saying to me. I had seen lots of children and adults with Down Syndrome. Cases that ranged from mild to severe. All of them were recognizable by their facial features. He then began to explain to me that there was a form of Down's called Mosaic Down Syndrome. In these cases, the chromosomal abnormality trisomy 21 was present without the physical characteristics of typical Down's Syndrome. He then proceeded to tell me that my son would be mentally retarded, never be able to attend regular school and  that he would likely have the mental capacity of a 10 to 12 year old when he was an adult. He said all this to me as if it were nothing. He sent me off to make an appointment with the Geneticist to confirm what he was sure was Cooper's diagnosis.

I was devastated. I had walked into that office that day with what I believed was a normal little boy with some very treatable GI issues. I was determined to hold on to the fact that he had been given a clean bill of health when he left the hospital that first day. As the neurologist explained to me about the simian crease, he also pointed out several other genetic abnormalities: low ears, creased ear helix (we called them his "Spock ears". We thought they were cute!), wide spaced eyes, epicanthal folds (a fold of skin over the corner of the eye-also common in Down's). On and on, he pointed these physical features out on my beautiful boy that were all signs of a genetic syndrome. Sure, people can have one or two and it mean nothing, But several together? He was completely sure. Cooper definitely had a genetic syndrome and he was positive it was Mosaic Down's.

I was angry. Angry at him for being so cold and cruel as he delivered life altering news. Angry at every single doctor and nurse who had examined my child and failed to mention even one of these things to me. How could this have been missed for EIGHT MONTHS! Angry that I would have to WAIT. First to get the blood drawn and then 4 weeks for the results. Once that was done, there was nothing to do but take my sweet baby home and try to keep living life without completely falling apart.

Genetic syndrome or not, we still had to get this GI thing under control. Our gastroenterologist had finally ordered an upper GI and pH probe. Scott and I took Cooper to Children's Hospital to be put under sedation for the second time in a month (the first time was for the MRI) to have the scope done and then have a pH probe placed-this required a tube to be run down his nose into his stomach to monitor the gastric reflux into his esophagus over a 23 hour period. It was a long, difficult process for all three of us, but the results showed that Cooper had severe gastric reflux due to the upper esophageal sphincter not functioning properly. It was allowing gastric juices to flow up into the esophagus every time his stomach contracted, leaving the bottom third of his esophagus raw and bloody. Left untreated, it could turn into esophageal cancer. We were promptly referred to a surgeon and one month later Cooper underwent a Nissen Fundoplication, where the upper part of the stomach is wrapped around the bottom part of the esophagus and sutured in place to prevent gastric reflux. It was done laproscopically, so he only had five small incisions. He stayed in the hospital a couple of days and then went home never to throw up again! It was a complete success! We were told it would take about 6 weeks for him to completely recover and then we should start to see him gradually get stronger and start to gain weight. We were thrilled.

Four weeks to the day after Cooper's blood was drawn to test for Down's,  I contacted the Genetic's office for the results. I had spent  hours researching Mosaic Down's. Cooper looked completely normal to me. He was too young and had been through too much with the GI stuff to adequately judge his cognitive function. I was trying to accept it, but it just didn't fit. When I finally got someone on the phone who could track down his testing, I was told that the test was negative. Cooper did not have Down's Syndrome. He would be brought back in for more genetic testing, but all would come back negative. The Geneticist would explain that there was no genetic panel that could be run to rule out all genetic syndromes. There was still a possibility that Cooper had a genetic syndrome. I didn't think so. In my mind I was still desperately clinging to my inner mantra: "He's fine. If there really was something wrong, they would have found it by now. He's going to be fine."

Over and over I would tell myself. And by the end of that year, I believed it. We celebrated Cooper's birthday with all our family and friends. It had been a long, hard twelve months. Cooper had recovered from his surgery, but still could not sit up on his own or walk, although he had begun to combat crawl. No attempt at speech yet either, but I wasn't really worried. They had told me it would take a couple of years for him to catch up with other babies, and that was without all the GI problems he had been through. He was the cutest little one year old I'd ever seen. The next year was going to be great, I just knew it...


Some favorite photos from that first year...

Brother love!
Big smile for his big brother!

 He loved to sleep with Cole even then!

 LOVE!LOVE!LOVE!

Had to include this one! First Halloween-2 months old! So darn cute!!

4 months old. Playing with one of his first Christmas presents with Daddy.

6 months old here. Daddy's little mini me!

One of my all time favorite pictures of my boys taken on our first vacation...

First Birthday!!!

Cake face!

After cake-change of clothes! Present time!

As you can see, he couldn't sit up on his own at all...

...but he was a happy boy. We thought by his next birthday he would be running and laughing and playing just like all the other kids. After everything we had been through that first year, we had no idea the most difficult days were still ahead.