Evaluation with the autism clinicOne of the evaluations we had done was at the autism clinic in San Diego affiliated with the Children's hospital in town. The evaluation was 3 parts. 1st part was a meeting between the dr. and the parents. This gives the parents a chance to speak openly about problems, school and medical history and other concerns without the child hearing. Dave and I went to this together and it was somewhere in the 60-90 minute range. I can't say that this was enjoyable at all since it was basically an hour of talking about all the bad things about Calvin - not an edifying experience at all but a necessary part of the evaluation process. It was fairly clear from the onset of this process that Calvin wasn't going to be diagnosed with autism but there was still some benefit to completing the evaluation since more than anything we were looking for a place to find help. One suggestion she made at this first meeting was to see a developmental and behavioral pediatrician for guidance. They are trained to deal with sleep problems as well as behavior problems -- a good match for us. I started the process of getting an appointment with the behavioral specialist very soon after we left this meeting.
The second part was an evaluation of Calvin which took place 3 weeks later. The test started at 8am so Dave took CAlvin to start the test and the plan was for me to come relieve him after dropping of kids at school and babysitters, etc. The scheduled appointment time is 6 hours. I was concerned Calvin wouldn't be cooperative but the dr. assured me I shouldn't worry, so I didn't. After all, this lady deals with autstic kids for a living so she must be somewhat used to seeing kids who aren't 100% cooperative. For the first part of the eval she spent some time chit-chatting with Calvin to evaluate speech, eye contact, conversation flow, appropriateness of topics, reciprocity, etc. He was very cooperative for this as he usually enjoys talking with anyone. He is not shy and not nervous about talking to people. She did another test where Calvin was asked to copy some shapes on a piece of paper exactly as she did. He was willing to cooperate but tried to turn the paper to make it easier to copy the shapes. This was not allowed in the test so when the dr. tried to encourage him to do it without turning the paper he became very agitated and uncooperative. After a short food break Calvin tried again. He was not cooperative for long and eventually got the dr. so upset she decided to stop the testing. I was pretty surprised at this since I thought she would be used to difficult kids. All said, Calvin was done with the testing before I even got there...less than 3 hours.
The 3rd appointment was once again for parents and dr. only to discuss the results of the testing. As we had suspected, CAlvin did not fall on the autism spectrum but did share some characteristics with autistic kids such as sensory processing difficulties, inappropriate responses, pragmatic speech problems. She gave us some suggestions us seek help for these areas with OT at children's and at school, cognitive behavioral therapy and a few new goals for his ongoing speech therapy at school. This was a very small part of our discussion.
Since Calvin doesn't have autism the question remains, what does he have? Why is he having such extroidinary difficulties in all aspects of life? The dr. had printed an article about the possible link between craniosynostosis and behavior problems noting that in the children who had craniosynostosis there was a higher incidence of behavior problems in the years to follow. She said that we could not rule out craniosynostosis as the possible cause of the problems we were currently having. I was kind of surprised and disappointed as she discussed this for 2 reasons: 1. we already knew this. Dave had found every article in print about craniosynostosis and the links to behavior problems, sleep apnea, adhd and other disorders we had thought Calvin had at one time or another. and 2. how was this going to help me? it wasn't.
The rest of our discussion was about school placement. At this time (mid-november) we were at a major crisis in school. Calvin was suspended several times. He was constantly in trouble. I kept him home many days because he was in such a mood I knew that if he went to school he would be sent home and there was nothing good happneing when things escalated to that point. I had already started looking at the special education classrooms in the district trying to see where Calvin would fit best. This was THE ongoing topic of discussion between Dave and I and in her professional opinion we should push hard for the SED class which was being offered to us.
A complete written report was completed another 2 weeks after our final meeting. I was able to bring this to the school and was also nice to have so that all suggestions, and discussion was documented clearly for my records and benefit.
Diagnosis: 1. behavior problems due to medical condition 2. Oppositional defiant disorder (#1 basically means that there is a problem but do to unknown causes or in this case we can't rule out that it might be due to craniosynostosis)
**As luck would have it we were able to get in to see the behavioral pediatrician right around the same time we finished up our eval with the autism clinic. (Dr. appts consumed my life in November!)
Eval with the developmental and behavioral pediatrician
I was so grateful to be directed to the behavioral pediatrician. I had been feeling for a long time that the regular ped. and the psyciatrist we were seeing were truly in over their head and that we weren't really moving in the right direction. I was glad to know that there are drs. especially trained to deal with these difficult cases. I was also kind of pissed off at my regular dr. for not having told me about them 3 years ago when I came to him begging for help with the sleeping issues we were having back then and also that he didn't tell me about this anytime over the past couple of years when I have talked to him repeatedly about the problems we have been having. Anyway, enough of that rant.
Dr. Gahagan was great. She was a very soft spoken, sharp lady around 50 years old. She did very well with Calvin. She was not at all offended or put off by his defiance. She worked with him as much as she could and was very gentle with him. She examined him as a doctor does, listening to his heart and lungs, checking muscle tone throughout his body, felt his hands and feet, watched him walk, checked reflexes, etc. It was amazing to see Calvin so cooperative. (not perfect but quite receptive). Since dave and I were both at the appointment we were able to talk to her and let her see Calvin and then also had an opportunity to speak to her without Calvin present (I took him to the lobby to watch spongbob so dave could talk to her alone).
She also had a long discussion about the craniosynostsis and the possibility that these problems are all linked to his original birth defect. It is unknown what exactly causes the suture on the skull to fuse early. Some hypothesize that brain development is not as it should be from the beginning and is not growing at the rate it should that is why the skull fuses early. It is not really known, but what is known is that kids with craniosynostosis have a high incidence of eye and ear problems and also behavior and sleep problems. The simplest of answers is that everything is linked to this single disorder.
She strongly recommended the self contained classroom for Calvin and thought that the first thing we should tackle is the sleep disorder. AFterall, no matter what you do to help someone learn new coping skills, if you are super tired, grumpiness will be hard to overcome. So, she prescribed a medication to help him sleep at night and encouraged us to keep pursuing all the avenues of help we are trying.
Diagnosis: 1. sleep disorder 2. oppositional defiant disorder 3. sensory processing disorder
I asked her why she didn't add ADHD to the diagnosis and she said it was because he reacted so poorly to the medication (we tried 2). usually the medication is extremely effective.
Oppositional Defiant Disorder (ODD)
symptoms:
•Frequent temper tantrums
•Excessive arguing with adults
•Often questioning rules
•Active defiance and refusal to comply with adult requests and rules
•Deliberate attempts to annoy or upset people
•Blaming others for his or her mistakes or misbehavior
•Often being touchy or easily annoyed by others
•Frequent anger and resentment
•Mean and hateful talking when upset
•Spiteful attitude and revenge seeking
(Calvin has all of these - on a daily basis)
I have learned a lot about different syndromes and disorders over the last year. I have probably read at least 20 books - one thing I have learned is that the difference between a "normal" kid and a kid with a disorder, be it ODD or ADD or whatever, is that the normal kid will display behaviors sometimes but can still function at home, in school, with friends, etc. Where it gets to the point that it is labeled a disorder is when the behaviors interfere so much with life and in more than one setting that the child is disabled. Calvin's behavior is very present at home, at school, at play and everywhere he goes.
ODD is a cluster of symptoms and not a description of how or why a child behaves this way. One of the very most difficult things about Calvin's disorder is that parent roles have such a crucial part in the development and treatment of the disorder. It is so hard not to crucify myself with guilt over having been such a bad parent that I have raised a child who is failing in all areas of life. Sometimes it is so difficult I feel like I could just die of despair. Additionally, it is my parenting skills and ability to train him to get past his deficits that will allow him to move forward and hopefully become a productive and happy and active boy. This is a heavy burden to consider and one which I do not know if I am capable of. However, there isn't really any way to quit and give up so we just keep moving forward day by day hoping that somehow it will all turn out okay.
We did move Calvin to a special ed class in november. It took me a couple of weeks to figure out which class would be best (the IEP team recommended a certain class but I was not sure I trusted their choice at first but in the end I agreed that they were correct). After deciding that this SED class was right I spend another few sleepless nights grieving over the realization and acceptance that my child did belong in this class. I recognized the feeling as I have had it before - it is the feeling of grief over the loss of the ideal child. Many parents feel this and I know I am not alone. I felt it when Calvin was a baby and I knew that he wasn't "normal." Grief feels terrible. I also felt the same when my Mom died. All grief feels the same I guess. CS LEWIS describes it perfectly in A GRIEF OBSERVED. It is almost like a paralyzing fear which leaves you in a haze.
Anyway, once we put Calvin in the class I felt much better and have been able to keep moving forward day by day. Some days are still awful but on the plus side Calvin is getting more attention at school, more work done and he doesn't get suspended so I know that I have 6 hours to do what I need to do while he is at school and I won't get called to pick him up. his class has 6 kids (all boys) and 3 full time teachers plus a couple of aids who pop in a couple of days a week.
Monday, January 2, 2012
Sunday, January 1, 2012
craniosynostosis story
background: Calvin was born in FEB 2003 just as I was finishing up my masters in cell biology and dave was finishing up his chemical engineering degree.
When Calvin was born his face/head looked a little funny. After a very difficult delivery we just figured his skull was misshapen as can often happen during childbirth, especially if the baby spends a lot of time in the birth canal.
When we went in for our 2 week appointment, the head shape was still a concern to us. The pediatrician said we shouldn't worry. So we didn't. However, it was still somewhat of a concern that Calvin's head was asymmetrical and didn't seem to be correcting.
At our 2 month appointment we pressed the pediatrician to answer our question about why Calvin's head still looked funny. He asked Dave to take of his hat so that he could see if Dave's head looked funny too. (looking back this dr. was a moron, but at the time I didn't know that I should find a new dr. if I didn't like the one I had)! Since we insisted Dave's head was perfectly fine, the Dr. agreed to do an x-ray of Calvin's head. When we got word back we were told he had a sealed L coronal suture. Craniosynostosis.
A normal skull looks like this:
A skull with a fused coronal suture looks like this:
another description:
this image shows how the other bones, sutures compensate when the coronal suture fuses early
AFter our xray we had another scan done to get a better image of the skull and we also had an ultrasound to check and make sure the brain was healthy (it was).
We consulted with doctors to figure out what would be the best course of treatment. Most doctors like to do surgery on the craniosynostosis babies at around 6 months old. This was a precarious time for us because exactly 6 months after Calvin was born we would be moving from UT to OHIO so dave could start med school.
We hatched plan. . . Calvin would have surgery mid-august. Dave would be in SLC for the surgery and a couple of days post-op. I would stay a couple of extra weeks for recovery and then join dave in ohio. After we graduated BYU I moved to my grandparents house to wait for surgery and make my hands bleed, washing and purell-ing everything trying to keep Calvin healthy so he would be ready for elective surgery AUG 14th.
The day before surgery we were at the hospital doing the pre-op blood work when we got a call from somebody in the hospital. Our surgeons retina had detached and HE (THE Surgeon) was currently in surgery getting his eyes operated on. He would be out of the office for an indefinite amount of time -- at least a month. EARTH SHATTERING news for us. We were devastated.
We decided to go ahead to Ohio and find a new dr. there. We heard the guy at Columbus Childrens was not the best so we went up to The Cleveland Clinic on the recommendation of our SLC doctor who knew and loved the cranialfacial surgeon there. Dr. Papay. The Cleveland Clinic had great facilities and was about 2.5 hours away from us in Columbus.
Surgery for craniosynostosis is done by a team of surgeons. A craniofacial plastic surgeon and a neurosurgeon.
Calvin's surgery was scheduled for OCT 1st. just shy of his 8 month mark. I was extremely stressed about getting the surgery done at the right time but it seemed to be within the right window of time.
There was something I forgot to write about and that was our decision whether or not to have Calvin operated on. Initially when we found out Calvin had craniosynostosis we were not sure whether or not we should operate on him. The operation, though not life threatening and super dangerous still had risks such as the risks with general anesthesia, bleeding, brain damage or in worst case even death. And because the surgery is cosmetic we wondered if it was really necessary. We also wondered what a craniosynostosis adult would look like if they don't get the operation (called cranial vault Reconstruction) done as a baby. These questions weren't fully answered butt as far as we could tell from our research it was the best and most accepted treatment.
There was actually a woman in our ward at the time, who had had the cranial vault reconstruction as a baby over 20 years earlier. She let us feel her head (not perfectly round) and assured us she had turned out fine! It was nice seeing her. She had a different suture that had been sealed than Calvin's so her deformation was on the skull only, not her face. Her scar was not visible at all thanks to some beautiful thick hair.
okay, now back to the story :
The preparation for surgery wasn't too bad. We had several Dr. appointments to make sure things were all okay. The surgery was to be about 5 hours start to finish and would be performed by the neurosurgeon (who does the opening of the skull just in case there is any problem) and the cranial-facial surgeon who does the majority of the case -- opening up the skull so that there is a suture line and also restructuring the brow and skull. We learned that the scar would run from ear to ear across the top of the head and would zig-zag to help hide the scar in the hair. We were prepared for a week long hospital stay after the surgery and made arrangements to stay at the Ronald McDonald house adjacent to the hospital. Dave's mom made plans to come out and help so that the baby would never need to be left alone in the hospital (and dave couldn't stay in Cleveland and miss a full week of medical school).
Babies bleed a lot during the surgery and require a blood transfusion during the operation. We decided to do a directed donation from myself to Calvin. I remember getting the paperwork for this was a pain, but it worked out eventually. Those of you who know I am a huge weenie when it comes to all things bloody know that this was a sacrifice for me. I had previously passed out at the dentist office where I was not even the patient, in my lab when I sliced my thumb, and while serving as moral support for a friend who was draining a bloody fingernail. I don't like to see blood!!
One of the things that I was worried about was the fact that Calvin had to be fasted for his surgery. He was still waking up in the night occasionally to nurse and always ate first thing in the morning and he would not be able to do either. Everything worked out well for us though. I woke him up and fed him at around 10 or midnight to feed him knowing that he wouldn't be able to eat again before surgery. When he got up in the morning we got ready and left quickly and once we were at the hospital there was enough commotion to keep him busy and occupied so he never reached that point of being hungry and inconsolable. This was a tender mercy. I thought for sure he'd be screaming while we waited for surgery to begin. They always give the littlest patients the earliest start so that they don't have to fast as long during the day. We had to be there around 6 or 6:30am.
Everything went very smoothly the day before (check-in, blood work and leading up to the operation). I was thankful.
The operation went well too.
pre surgery pics of cute little Calvin
Calvin 6 weeks old.
Calvin 4 months old.
5 months
6 months
7 months
looking back at these pictures now (in terms of the craniosynostosis story) kind of breaks my heart, it also strengthens my testimony of the fact that we are really helped through our trials. I NEVER complained about calvin's craniosynostosis - it was just life. As we all do with our children, I just loved Calvin and that was all that mattered. However, looking at these pictures makes me remember that it was difficult to walk around with a funny looking baby. I have now 3x had the experience of carrying around beautiful little girl babies that people ooh and ahh over. It is nice. It never really bothered me that carrying around Calvin people would stop and stare or defer making comments about his cuteness b/c I didn't know any better. I guess that is why looking back at these pictures now I am flooded with emotion and can really feel that grief I felt when I knew I didn't have a normal child. I am also reminded of the constant fear I had and the looming surgery. Even though I had been told all would be well I always had it in the back of my mind that he might actually die during the operation or have brain damage and never be the same afterwards. As I said, I never complained or felt short changed at all but it was difficult. I don't think I could do it again. I know that through our trials we are given help by angels in heaven and on earth and that we are given the strength we need to survive. It is a beautiful miracle.
The week of surgery and shortly thereafter
Oct 1st wed-- surgery day. We checked in early. Surgery was scheduled for 5 hours. We waited in the waiting room -- as I recall we got one call from the dr. during surgery to let us know all was going okay and then a call when it was over letting us know they were done. Even after it was over we had to wait a while before we could go see Calvin in the ICU. Overall I think he was gone from us from 7am-2pm. This was the longest I had ever been away from him before. He was still nursing so during that time at one point I had to go to the NICU to pump (the NICU had the best pumps in the hospital!
When we went to see Calvin in the ICU I didn't even recognize him. His head was wrapped and there was a drain coming out of his head. He was wearing a gown and a diaper and that's all. He was drugged up and sleeping.
The ICU has strict visiitng hours and small rooms with only a small chair for one visitor. Dave and I and his mom rotated taking shifts to be with him. It was nice to have Dave's mom there to take turns. That first night she stayed the middle of the night shift so Dave and I could sleep. We stayed at the Ronald McDonald house. I LOVE the Ronald McDonald house. I will someday donate $$ to them. It is great -- provides free food and very cheap (like $10/day or even free if necessary) housing for families who have kids in the hospital. It is so stressful to have a kid in the hospital and their services do so much to make life a little easier for those families who are there for a long long time. we were only there a few days but there are some who stay so much longer and have so much suffering.
Day 2 th- we moved to a regular floor at some point. Calvin was very sensitive and sleeping most of the time. He would throw up when people came and woke him up to bother him for vitals.
Day 3 fri- I held him for the first time after surgery. He was super swollen. I posted a sign on our door asking drs and nurses to speak softly when they came into our room so they wouldn't wake him every time they came in! :)
Day 4- sat - started to get the old Calvin back. smiling and happy
Day 5- sun - we thought we might get to go home but they decided to keep us one more day.
Day 6 - 2.5hour drive home. Lisa brought us dinner :) poppyseed chicken and chocolate revel bars. YUM:)
ONe thing I remember is how much suffering we saw in the hospital (not ours). There is nothing like a stay in the hospital to make you realize how lucky you are. I remember one child in particular who was on our floor. At the time he seemed big - since my baby was still a baby - but he was probably 2 or 3 years old. He was on his 4th surgery and an inpatient for cancer/chemotherapy/radiation etc. The hospital had become home. It was sad. I also remember another family staying in the ronald mcdonald house with us. They had a baby also. The baby had been in a car accident with both parents. The parents were both killed and the baby had brain damage and was being operated on by the same neurosurgeon we were using. The grandparents were taking care of the baby. Anyway, I saw so many people in a worse situation than we were in. There is nothing like seeing the suffering of others to make you grateful for what you have.
When we got home Calvin was back to his normal self and (we thought) our journey was over. We were so happy to have a healthy boy and so glad things went smoothly. He had stitches in for a while but they mostly came out on their own and we had no complications. Calvin looked good.
We thought of doing something freaky with his stiches showing for Halloween but we decided to just dress him up like his dad. (we have since had to throw away these shirts becuase they are too Michigan-y)!
In the Years after Surgery
After the surgery life resumed to normal. It is amazing how quickly babies recover! We figured we were done with our craniosysnostis journey.
Over the years we have had a few eye and ear issues with Calvin which are more than likely related to his craniosysnostosis. These problems are not 100% unique to craniosynostosis but they are found in a very high incidence in the craniosynostosis kids compared to the regular population.
At age 3 we noticed Calvin using one eye to look at the TV or if he dropped a toy he would turn his head and use one eye to try and find it on the ground. The eye exam at the dr. revealed near perfect vision in one eye and pretty severe astigmatism in the other eye (20/80). We got glasses and started the patching WAR which lasted several years to come. IN hindsight I believe the patching was a major contributor to the defiance we bred in him. He learned from patching to fight, fight, fight. Our eye dr. told us there was NOTHING we could do to our child which would be worse than letting him lose vision in his eye so we tied his hands, taped his face, bribed, threatened and begged him to wear his patch over the years.
Around the same time -- age 3 -- Calvin was falling behind enough in speech that we started to seek out speech services for him. I didn't know at the time that the FIRST thing you should do when a child has speech problems is check the hearing to see if the problems developing speech are due to not being able to hear properly. So, it took us some time to figure out that he had mild/moderate hearing loss in both ears.
Both of these are not major problems. However, to have a child develop with moderate deficits in 2 senses does have an effect. We had always felt bad that our kid was 1/2 deaf and 1/2 blind until age 3 and struggled to get normal hearing 'til 1st grade when his first hearing test was "normal." His vision even with glasses was very week until about 2nd grade when he finally moved to 20/40 which I think is the best we will get even with glasses.
(For those unfamiliar with how corrected vision - with glasses - doesn't come to 20/20 I will tell you a tiny bit of what I know. When one eye is stronger than the other by such a significant margin the brain learns to "shut off" input from the weaker eye so that it can get a clear picture from the good eye. Because the brain is not using input from the bad eye, the part of the brain the receives input from the bad eye becomes weaker and less responsive. Eventually the brain atrophy is significant that even with glasses on, the input from the bad eye is basically ignored and quits developing. So, when the glasses come on, even though the eye is capable of seeing, the brain need more exercise to be ready to receive the vision. That is why you patch the good eye to strengthen the bad eye. If you don't patch the good eye the bad eye may never develop at all. Most success in patching comes at the younger ages -- before age 8).
So ... now fast forward a few years to 2nd grade and the present.
We have had a bunch of testing done over the last year. It started with some testing done at the school last spring. The school did some psychological and academic testing. We were looking for answers as to why Calvin is having so many behavior problems in school .. is it because he is having trouble learning and getting frustrated (learning disability), does he have any cognitive delays, does he have a "syndrome"? He ended up having no cognitive or learning disabilities, however we did see some weakness in the visual and auditory processing. And some major differences in his sensory processing behaviors. I had never realized until I was sitting in that meeting and we were discussing the results that all of the results of this testing was pointing to his history and could easily be understood knowing that he had spent most of his developmental time with major deficits hearing, speaking and seeing. To be honest, I was kind of blown away.
We moved forward with the medical side as well --
At first glance he is easily diagnosed with ADHD but it has never seemed like a perfect fit. After a year of not believing the diagnosis we decided to go ahead and trust the dr's opinion and try some ADHD medication. It was disastrous. He did not respond well to the medication. We continued looking for help feeling that a regular pediatrician and our psychiatrist were out of their league and that Calvin wasn't the typical ADHD kid as they had thought. However, I didn't really know where to turn. What kind of dr. should I go to? who could help us? Even though we had a bunch of testing done at the school they really only tell us what the kid qualify's for in terms of special education services. They don't direct you to help if needed outside the school setting or tell you what the testing means in real life.
Over the summer I met a mom with a kid on the autism spectrum who asked me if I was getting the help I needed for Calvin -- who was melting down at scout camp where she and I were both leaders. She directed me to get some testing done at the autism institute and then by a behavioral and developmental pediatrician. I was so grateful that she spoke up. Most people when they see Calvin on the floor crying or have a huge meltdown walk away. I was grateful that she approached me and asked "Do you know what is wrong with him?" (in a kind way). I have learned though my experience with a special needs kid how to better approach other families with special needs kids too. I guess that is what life experience is all about. Like I said before, I just wish I could have learned to be a kind and understanding person without having to suffer through hard times. Sadly, I am not one of those....I am one that has to be compelled to be humble.
We had to wait a long time for these appointments. We just finished up this testing process through both clinics. another cliffhanger... but at least we are up to the present time! :)
When Calvin was born his face/head looked a little funny. After a very difficult delivery we just figured his skull was misshapen as can often happen during childbirth, especially if the baby spends a lot of time in the birth canal.
When we went in for our 2 week appointment, the head shape was still a concern to us. The pediatrician said we shouldn't worry. So we didn't. However, it was still somewhat of a concern that Calvin's head was asymmetrical and didn't seem to be correcting.
At our 2 month appointment we pressed the pediatrician to answer our question about why Calvin's head still looked funny. He asked Dave to take of his hat so that he could see if Dave's head looked funny too. (looking back this dr. was a moron, but at the time I didn't know that I should find a new dr. if I didn't like the one I had)! Since we insisted Dave's head was perfectly fine, the Dr. agreed to do an x-ray of Calvin's head. When we got word back we were told he had a sealed L coronal suture. Craniosynostosis.
A normal skull looks like this:
A skull with a fused coronal suture looks like this:
another description:
this image shows how the other bones, sutures compensate when the coronal suture fuses early
AFter our xray we had another scan done to get a better image of the skull and we also had an ultrasound to check and make sure the brain was healthy (it was).
We consulted with doctors to figure out what would be the best course of treatment. Most doctors like to do surgery on the craniosynostosis babies at around 6 months old. This was a precarious time for us because exactly 6 months after Calvin was born we would be moving from UT to OHIO so dave could start med school.
We hatched plan. . . Calvin would have surgery mid-august. Dave would be in SLC for the surgery and a couple of days post-op. I would stay a couple of extra weeks for recovery and then join dave in ohio. After we graduated BYU I moved to my grandparents house to wait for surgery and make my hands bleed, washing and purell-ing everything trying to keep Calvin healthy so he would be ready for elective surgery AUG 14th.
The day before surgery we were at the hospital doing the pre-op blood work when we got a call from somebody in the hospital. Our surgeons retina had detached and HE (THE Surgeon) was currently in surgery getting his eyes operated on. He would be out of the office for an indefinite amount of time -- at least a month. EARTH SHATTERING news for us. We were devastated.
We decided to go ahead to Ohio and find a new dr. there. We heard the guy at Columbus Childrens was not the best so we went up to The Cleveland Clinic on the recommendation of our SLC doctor who knew and loved the cranialfacial surgeon there. Dr. Papay. The Cleveland Clinic had great facilities and was about 2.5 hours away from us in Columbus.
Surgery for craniosynostosis is done by a team of surgeons. A craniofacial plastic surgeon and a neurosurgeon.
Calvin's surgery was scheduled for OCT 1st. just shy of his 8 month mark. I was extremely stressed about getting the surgery done at the right time but it seemed to be within the right window of time.
There was something I forgot to write about and that was our decision whether or not to have Calvin operated on. Initially when we found out Calvin had craniosynostosis we were not sure whether or not we should operate on him. The operation, though not life threatening and super dangerous still had risks such as the risks with general anesthesia, bleeding, brain damage or in worst case even death. And because the surgery is cosmetic we wondered if it was really necessary. We also wondered what a craniosynostosis adult would look like if they don't get the operation (called cranial vault Reconstruction) done as a baby. These questions weren't fully answered butt as far as we could tell from our research it was the best and most accepted treatment.
There was actually a woman in our ward at the time, who had had the cranial vault reconstruction as a baby over 20 years earlier. She let us feel her head (not perfectly round) and assured us she had turned out fine! It was nice seeing her. She had a different suture that had been sealed than Calvin's so her deformation was on the skull only, not her face. Her scar was not visible at all thanks to some beautiful thick hair.
okay, now back to the story :
The preparation for surgery wasn't too bad. We had several Dr. appointments to make sure things were all okay. The surgery was to be about 5 hours start to finish and would be performed by the neurosurgeon (who does the opening of the skull just in case there is any problem) and the cranial-facial surgeon who does the majority of the case -- opening up the skull so that there is a suture line and also restructuring the brow and skull. We learned that the scar would run from ear to ear across the top of the head and would zig-zag to help hide the scar in the hair. We were prepared for a week long hospital stay after the surgery and made arrangements to stay at the Ronald McDonald house adjacent to the hospital. Dave's mom made plans to come out and help so that the baby would never need to be left alone in the hospital (and dave couldn't stay in Cleveland and miss a full week of medical school).
Babies bleed a lot during the surgery and require a blood transfusion during the operation. We decided to do a directed donation from myself to Calvin. I remember getting the paperwork for this was a pain, but it worked out eventually. Those of you who know I am a huge weenie when it comes to all things bloody know that this was a sacrifice for me. I had previously passed out at the dentist office where I was not even the patient, in my lab when I sliced my thumb, and while serving as moral support for a friend who was draining a bloody fingernail. I don't like to see blood!!
One of the things that I was worried about was the fact that Calvin had to be fasted for his surgery. He was still waking up in the night occasionally to nurse and always ate first thing in the morning and he would not be able to do either. Everything worked out well for us though. I woke him up and fed him at around 10 or midnight to feed him knowing that he wouldn't be able to eat again before surgery. When he got up in the morning we got ready and left quickly and once we were at the hospital there was enough commotion to keep him busy and occupied so he never reached that point of being hungry and inconsolable. This was a tender mercy. I thought for sure he'd be screaming while we waited for surgery to begin. They always give the littlest patients the earliest start so that they don't have to fast as long during the day. We had to be there around 6 or 6:30am.
Everything went very smoothly the day before (check-in, blood work and leading up to the operation). I was thankful.
The operation went well too.
pre surgery pics of cute little Calvin
Calvin 6 weeks old.
Calvin 4 months old.
5 months
6 months
7 months
looking back at these pictures now (in terms of the craniosynostosis story) kind of breaks my heart, it also strengthens my testimony of the fact that we are really helped through our trials. I NEVER complained about calvin's craniosynostosis - it was just life. As we all do with our children, I just loved Calvin and that was all that mattered. However, looking at these pictures makes me remember that it was difficult to walk around with a funny looking baby. I have now 3x had the experience of carrying around beautiful little girl babies that people ooh and ahh over. It is nice. It never really bothered me that carrying around Calvin people would stop and stare or defer making comments about his cuteness b/c I didn't know any better. I guess that is why looking back at these pictures now I am flooded with emotion and can really feel that grief I felt when I knew I didn't have a normal child. I am also reminded of the constant fear I had and the looming surgery. Even though I had been told all would be well I always had it in the back of my mind that he might actually die during the operation or have brain damage and never be the same afterwards. As I said, I never complained or felt short changed at all but it was difficult. I don't think I could do it again. I know that through our trials we are given help by angels in heaven and on earth and that we are given the strength we need to survive. It is a beautiful miracle.
The week of surgery and shortly thereafter
Oct 1st wed-- surgery day. We checked in early. Surgery was scheduled for 5 hours. We waited in the waiting room -- as I recall we got one call from the dr. during surgery to let us know all was going okay and then a call when it was over letting us know they were done. Even after it was over we had to wait a while before we could go see Calvin in the ICU. Overall I think he was gone from us from 7am-2pm. This was the longest I had ever been away from him before. He was still nursing so during that time at one point I had to go to the NICU to pump (the NICU had the best pumps in the hospital!
When we went to see Calvin in the ICU I didn't even recognize him. His head was wrapped and there was a drain coming out of his head. He was wearing a gown and a diaper and that's all. He was drugged up and sleeping.
The ICU has strict visiitng hours and small rooms with only a small chair for one visitor. Dave and I and his mom rotated taking shifts to be with him. It was nice to have Dave's mom there to take turns. That first night she stayed the middle of the night shift so Dave and I could sleep. We stayed at the Ronald McDonald house. I LOVE the Ronald McDonald house. I will someday donate $$ to them. It is great -- provides free food and very cheap (like $10/day or even free if necessary) housing for families who have kids in the hospital. It is so stressful to have a kid in the hospital and their services do so much to make life a little easier for those families who are there for a long long time. we were only there a few days but there are some who stay so much longer and have so much suffering.
Day 2 th- we moved to a regular floor at some point. Calvin was very sensitive and sleeping most of the time. He would throw up when people came and woke him up to bother him for vitals.
Day 3 fri- I held him for the first time after surgery. He was super swollen. I posted a sign on our door asking drs and nurses to speak softly when they came into our room so they wouldn't wake him every time they came in! :)
Day 4- sat - started to get the old Calvin back. smiling and happy
Day 5- sun - we thought we might get to go home but they decided to keep us one more day.
Day 6 - 2.5hour drive home. Lisa brought us dinner :) poppyseed chicken and chocolate revel bars. YUM:)
ONe thing I remember is how much suffering we saw in the hospital (not ours). There is nothing like a stay in the hospital to make you realize how lucky you are. I remember one child in particular who was on our floor. At the time he seemed big - since my baby was still a baby - but he was probably 2 or 3 years old. He was on his 4th surgery and an inpatient for cancer/chemotherapy/radiation etc. The hospital had become home. It was sad. I also remember another family staying in the ronald mcdonald house with us. They had a baby also. The baby had been in a car accident with both parents. The parents were both killed and the baby had brain damage and was being operated on by the same neurosurgeon we were using. The grandparents were taking care of the baby. Anyway, I saw so many people in a worse situation than we were in. There is nothing like seeing the suffering of others to make you grateful for what you have.
When we got home Calvin was back to his normal self and (we thought) our journey was over. We were so happy to have a healthy boy and so glad things went smoothly. He had stitches in for a while but they mostly came out on their own and we had no complications. Calvin looked good.
We thought of doing something freaky with his stiches showing for Halloween but we decided to just dress him up like his dad. (we have since had to throw away these shirts becuase they are too Michigan-y)!
In the Years after Surgery
After the surgery life resumed to normal. It is amazing how quickly babies recover! We figured we were done with our craniosysnostis journey.
Over the years we have had a few eye and ear issues with Calvin which are more than likely related to his craniosysnostosis. These problems are not 100% unique to craniosynostosis but they are found in a very high incidence in the craniosynostosis kids compared to the regular population.
At age 3 we noticed Calvin using one eye to look at the TV or if he dropped a toy he would turn his head and use one eye to try and find it on the ground. The eye exam at the dr. revealed near perfect vision in one eye and pretty severe astigmatism in the other eye (20/80). We got glasses and started the patching WAR which lasted several years to come. IN hindsight I believe the patching was a major contributor to the defiance we bred in him. He learned from patching to fight, fight, fight. Our eye dr. told us there was NOTHING we could do to our child which would be worse than letting him lose vision in his eye so we tied his hands, taped his face, bribed, threatened and begged him to wear his patch over the years.
Around the same time -- age 3 -- Calvin was falling behind enough in speech that we started to seek out speech services for him. I didn't know at the time that the FIRST thing you should do when a child has speech problems is check the hearing to see if the problems developing speech are due to not being able to hear properly. So, it took us some time to figure out that he had mild/moderate hearing loss in both ears.
Both of these are not major problems. However, to have a child develop with moderate deficits in 2 senses does have an effect. We had always felt bad that our kid was 1/2 deaf and 1/2 blind until age 3 and struggled to get normal hearing 'til 1st grade when his first hearing test was "normal." His vision even with glasses was very week until about 2nd grade when he finally moved to 20/40 which I think is the best we will get even with glasses.
(For those unfamiliar with how corrected vision - with glasses - doesn't come to 20/20 I will tell you a tiny bit of what I know. When one eye is stronger than the other by such a significant margin the brain learns to "shut off" input from the weaker eye so that it can get a clear picture from the good eye. Because the brain is not using input from the bad eye, the part of the brain the receives input from the bad eye becomes weaker and less responsive. Eventually the brain atrophy is significant that even with glasses on, the input from the bad eye is basically ignored and quits developing. So, when the glasses come on, even though the eye is capable of seeing, the brain need more exercise to be ready to receive the vision. That is why you patch the good eye to strengthen the bad eye. If you don't patch the good eye the bad eye may never develop at all. Most success in patching comes at the younger ages -- before age 8).
So ... now fast forward a few years to 2nd grade and the present.
We have had a bunch of testing done over the last year. It started with some testing done at the school last spring. The school did some psychological and academic testing. We were looking for answers as to why Calvin is having so many behavior problems in school .. is it because he is having trouble learning and getting frustrated (learning disability), does he have any cognitive delays, does he have a "syndrome"? He ended up having no cognitive or learning disabilities, however we did see some weakness in the visual and auditory processing. And some major differences in his sensory processing behaviors. I had never realized until I was sitting in that meeting and we were discussing the results that all of the results of this testing was pointing to his history and could easily be understood knowing that he had spent most of his developmental time with major deficits hearing, speaking and seeing. To be honest, I was kind of blown away.
We moved forward with the medical side as well --
At first glance he is easily diagnosed with ADHD but it has never seemed like a perfect fit. After a year of not believing the diagnosis we decided to go ahead and trust the dr's opinion and try some ADHD medication. It was disastrous. He did not respond well to the medication. We continued looking for help feeling that a regular pediatrician and our psychiatrist were out of their league and that Calvin wasn't the typical ADHD kid as they had thought. However, I didn't really know where to turn. What kind of dr. should I go to? who could help us? Even though we had a bunch of testing done at the school they really only tell us what the kid qualify's for in terms of special education services. They don't direct you to help if needed outside the school setting or tell you what the testing means in real life.
Over the summer I met a mom with a kid on the autism spectrum who asked me if I was getting the help I needed for Calvin -- who was melting down at scout camp where she and I were both leaders. She directed me to get some testing done at the autism institute and then by a behavioral and developmental pediatrician. I was so grateful that she spoke up. Most people when they see Calvin on the floor crying or have a huge meltdown walk away. I was grateful that she approached me and asked "Do you know what is wrong with him?" (in a kind way). I have learned though my experience with a special needs kid how to better approach other families with special needs kids too. I guess that is what life experience is all about. Like I said before, I just wish I could have learned to be a kind and understanding person without having to suffer through hard times. Sadly, I am not one of those....I am one that has to be compelled to be humble.
We had to wait a long time for these appointments. We just finished up this testing process through both clinics. another cliffhanger... but at least we are up to the present time! :)
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