My experience of tragedy, trials, and triumphs!
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Tuesday, December 27, 2011

Trusting My Mother's Intuition

The last several months have been a giant jigsaw puzzle that I have been working on putting together. Cam's issues started interfering with normal life and I became more and more aware that his problem's are not limited to speech delay. As he started preschool and more intense speech therapy I also had extra eyes to confirm what I was noticing. Cam has a limited amount of energy and when he has reached his max he has nothing left. He has been declining in a lot of different ways. But is still the cutest sweetest little boy ever.
In November of 2010 I got the urgent feeling that I needed to figure out why Cam wasn't speaking, and that I needed to fix him. I started pushing the speech therapist and Doctors to figure it out and we ended up with the diagnosis of Periventricular Nodular Heterotopia (PVNH). In September of this year that feeling came back. "Something is wrong and you have to fix it!" My pediatrician felt that it was nothing and the things I was noticing wasn't too pressing. It was also apparent he hadn't taken the time to research Cam's diagnosis at all. The feeling wouldn't go away. After the appt. with the Neurologist I made the pediatrician make an appt. with the cardiologist. He did an EKG and a chest x-ray and felt that an echo wasn't necessary. The feelings didn't go away and neither has Cam's symptoms.
 I talked to my good friend who happens to be my OB at the beginning of Nov. and asked for her advice on how to deal with my Doctor. She offered to talk to one of the Dr. in the same practice. Four days later the new doctor called my and told me that she had spent the weekend researching PVNH and felt really strongly that we should have a consult with a genetics team at Primary Children's hospital. It usually takes 6 months to a year to get in with them. They called me that same day and said because of Cam's diagnosis he is a high priority and they made the appt. for 4 weeks later. We had the appt. 2 weeks ago. It was the first time in a year that I went into the Dr. office for a visit and didn't feel like I was the crazy mom looking for something to be wrong with my little boy. He was kind, understanding, and most importantly actually knew what PVNH is. Usually PVNH is x-linked and attached to the filamin-A gene. The geneticist didn't feel this was the likely reason for Cam's because I have 4 healthy sons not affected. He suggested we do a microarray test that would look at all the chromosomes and make sure he didn't have another syndrome that may have caused it. We were able to do the test that day, and we got the results back on December 22. (We got the abnormal MRI results last year on December 21) The test showed that Cameron has 22q 11.2 deletion syndrome. Also known as DiGeorge syndrome.
It has been an emotional week to say the least. It is hard to hear that something is really wrong with your child. But then I think about how I KNOW that something is wrong with him already and have been trying to figure out how to fix him everyday for the last 3 1/2 years. This just means that now I know WHY he has so many problems. More importantly it means I have new doctors that also know what is wrong with him and how to help. We have a lot of tests ahead of us. This syndrome has many problems that come with it. We are starting with a sleep study that we will do tomorrow. We are hoping to get an Echo done this week as well. We will talk with the specialist next week and have a better idea of what to expect for Cam. This is a lot to take in and process. I wish I had a crystal ball and could see his future. I guess I will have to just take it a day at a time instead. Dealing with the problems he is having now and trying really hard not to worry about the future.
I question why my life has to be harder than most people I know. I haven't come up with any answers. I just know that if I take time to find the blessings in my life they are there in abundance. Cam makes me happy everyday. He is the cutest, sweetest little boy I know and I wouldn't change a thing about him. Heavenly Father has lead me to Doctors that helped me figure all this out. The timing of things has been a huge blessing. Also, the timing of a beautiful baby girl after 15 years of longing for a daughter has really given me a boost. I don't know how I will make it through all these trials, but I know that I felt the same way when Jake died. I still struggle everyday with his death, but somehow I am making it through. I find the strength to go on with living everyday and finding Joy in what I have. I have so much to be thankful for. It is harder somedays than others but I get through each day. One of my favorite scriptures is in Alma 34:41. I read it just weeks after Jake's death and it continues to bring me peace. "But that ye have patience, and bear with those afflictions, with a firm hope that ye shall one day rest from all your afflictions."
I am thankful for the spirit that I know pushed me to continue to search for answers for Cam. This is life changing for him to have this information. As hard as it is to hear a diagnosis like this, Knowledge is power! We will get through everything that is coming our way. He is strong and loves life. I will continue to fight for him, love him, do everything I can to "fix" him, and accept the things we can't.

Monday, October 17, 2011

Cameron was seen by a cardiologist today. He has been extremely tired lately so the neurologist wanted to be sure he didn't have the heart condition that usually goes along with PVNH. He did great and we got fantastic news that his heart looks and is functioning normally. This is a huge relief for me. I believe he must be exhausted from his low tone and his brain is working over time right now trying to catch up with his speech. I think as he has grown and got bigger his muscles are having a hard time getting him around. I plan to put him in a tumbling class to help strengthen his muscles and the speech therapist is planning to add physical therapy to go along with the speech.
Cameron Toone
Age: 3
Birthdate: July 2, 2008
Diagnosis: Periventricular Nodular Heterotopia
Brief Description: Periventricular heterotopia is a condition in which nerve cells (neurons) do not migrate properly during the early development of the fetal brain, from about the 6th week to the 24th week of pregnancy. Heterotopia means "out of place." In normal brain development, neurons form in the periventricular region, located around fluid-filled cavities (ventricles) near the center of the brain. The neurons then migrate outward to form the exterior of the brain (cerebral cortex) in six onion-like layers. In periventricular heterotopia, some neurons fail to migrate to their proper position and form clumps around the ventricles.
Affected individuals usually have normal intelligence, although some have mild intellectual disability. Difficulty with reading and spelling (dyslexia) has been reported in some people with periventricular heterotopia. Less commonly, individuals with periventricular heterotopia may have more severe brain malformations, small head size (microcephaly), adevelopmental delays, recurrent infections, blood vessel abnormalities, or other problems. Periventricular heterotopia may also occur in association with other conditions such as Ehlers-Danlos syndrome, which results in extremely flexible joints, skin that stretches easily, and fragile blood vessels.
Web-sites with accurate information

Typical findings are:
  • epilepsy
  • developmental delay
  • psychiatric disorder or conduct disorder or learning disability
  • heart diseases (valvular defects, patent ductus arteriosus)
  • vascular diseases (aneurysm, stenosis and stroke)
  • connective tissue weakness
  • muscle weakness
  • coagulopathy
  • problems with motility of stomach and intestine (constipation, vomiting)
  • hyperflexible joints und increased skin elasticity
  • problems with nutrition
  • lung diseases
  • recurrent infections
  • reduced intelligence (often the intelligence is normal

Cameron’s symptoms:
-Over-all low muscle tone Knocked knee’d, flat feet, over-all weakness, low energy
-Developmental Delays on all milestones. Especially late with talking still struggling with it and not caught up at all. Cameron is in weekly speech therapy and attends the special needs preschool 2x a week. Speech Therapist notes a drastic decline in Aug. 2011 to present date in energy, labored breathing, slurring words, and overall performance.
-“Clumsy” Cameron still falls all the time while walking. Ability looks a lot like a 1 year old learning to walk for the first couple months. Lacks a moderate amount of balance and body awareness.
-Labored breathing especially when trying to focus on speaking and participating in activities.
-Extreme fatigue. Falls asleep all the time sleeping hours at a time during the day in addition to 11-12 hours every night. Increased in the last couple of months. Tires quickly and easily. Lays down during ST and regular play as often as possible, usually after a couple of minutes of sitting.
-Preschool teachers have observed a desire to participate but he easily tires and can’t continue in activity.
-Low motility of bowels (constipation) sensitive stomach (gets diarrhea after drinking fruit juice)
-Unexplained rashes all over body that come and go. Extreme eczema. Unknown allergies.
-Extreme sensitivity to loud noises (fireworks, even movies or plays) intense crying and covering his ears. Sensitive even when it’s not extremely loud things.
-unusually small ear canals
-deep set eyes, protruding forehead
-hyperextended joints
-Low-tone in mouth. Tongue forward motion from birth, unable to nurse or suck correctly. Still drools most of the time. Struggles to clear passageways when congested.

Friday, October 7, 2011

Major Progress!!

Cam has made amazing progress in the last few months. After we were able to get him to say "ball in" it was only a matter of weeks before he was talking. We are all so excited. It was like his brain found a new path and Cam was able to start communicating verbally. He went from less than 20 or so words to more words than I can count in a couple of weeks. He started putting 2 and 3 words together, and now is up to even 4 word sentences. He started by being a little parrot and repeating everything he heard. Now he is able to come up with the words on his own. He is still behind, but we are thrilled with his progress. Some of his words are hard to understand. It is a guessing game most of the day trying to figure out exactly what he is saying. Cam has loved being able to talk to people. He is very friendly and polite. He say's "thanks you" to everyone constantly for anything they do for him. A few weeks ago he said out of the blue, "Mom, love you" and he always responds "love you too" when I say it to him. He is so cute. He can say all his brothers names and most of his family's names too. When he is in trouble and crying he still signs "sorry" which is absolutely adorable. He reverts back to sign often especially when I don't understand what he is saying.
Cam remains in speech therapy once a week, and has started preschool. He goes to school twice a week and rides the bus. He loves watching for the bus and yells, "the bus, the bus" when it arrives. He is doing great in school. His teachers adore him.
Cam is also potty training with great success right now. This is exciting for us both. After a lot of research I found that most kids with PVNH aren't able to potty train until age 5 or 6 and really struggle with it. I am thrilled for him and so proud of how eager he is to become a big boy.

Saturday, May 14, 2011

Making Progress

Cameron has been making a lot of progress lately. He is starting to repeat a lot more using the last word someone says to him. Or attempting to at least. Sometimes he gets the first letter right or the last letter. He has more words on his own now too. Most of the words he says on his own has started by learning and using the sign first. I am so glad we chose to push the sign like we have. He loves to watch his signing time videos. He is much more social in the classroom as well.
He qualified for the special ed program through the school district recently. When he turns 3 he will start going to their preschool. We had his IEP this week and I am impressed with the people who will be working with him. He is assigned a nurse because of the medical issues that come with PVNH. She had done a lot of research on it and has it all down in his file. The teacher was nice and so was the speech therapist. I think it will be a very good thing for Cameron. He will start school in August. They even have a bus that pick him up at our house and bring him home. Cute, sad, and scary all at the same time. I think will use the bus occasionally but not regularly. I found a speech therapist that will start coming privately after he turns 3. That is when his services through Early Intervention will stop.
I spoke at a conference in front of 500 speech therapists from around the state in March. They had a specialist come and he interviewed me for 2 hours in front of them about Cameron and our families issues. It was a little scary but went really well. I think it helped open doors for Cameron though, so it was well worth it. Now the top people know me and Cam and that is a good thing.
The Hanen Program is ending this month. I have learned a lot and Cam has improved. I feel like blending the ideas from the Hanen Program and the typical speech therapy approach is exactly what will help Cameron break his silence. Along with the sign language! It is also how I found our new private speech therapist, so it has been well worth the extra time.
Cam has started communicating and telling stories through charades. It is so dang cute. He acts out things he has seen or what is going on. We went to the zoo and he imitated all the animals trying to express what he was seeing. I love it!
We are currently trying to find a new neurologist. I would like to find someone that has dealt with PVNH before. We found a facebook page that has other families suffering with PVNH. It has been very helpful and is where we have had the most success learning more about this rare condition. I haven't found a doctor yet that has ever even heard of it. The more I learn the more I realize that speaking might not be Cameron's only problem. There are a lot of physical problems, health issues, and learning disabilities that may come up. He is showing signs of a few of the problems now. My hope is that he won't have to deal with many of them but I also want to be prepared and know what to look for if they do come up.
Cam is still the cutest, bright eyed little boy ever and I am so lucky to have him as my son. He is happy and healthy and that is the most important thing! I am thankful to have such a great support system around me to help with everything. My family is all trying to learn sign language. Curtis has been a great support and help. My sister has babysat a ton of times while I am trying to go to classes and meetings. I have a great team to help Cam grow and progress. I am grateful for all of it!
mom dad papa mama, yeah, no, apple, josh-for all brothers, help-sounds like up, up, truck, in, out, hi, bye, hide, me/mine, down-with sign, milk-with sign, play-with sign, more-with sign, baby-with sign, choo-choo-with sign for train, blue-with sign, ball-with sign, eat-with sign

Finish, eat/food, drink, cereal, coat, cold, shoes, socks, blue, red, green, yellow, train, boat, airplane, phone, cry/sad, more, milk, cracker, water, swim, ocean, frog, fish, horse, cat, dog, work, baseball, ball, bath, wash hands,
baby, signing, time, friend, grandma/grandpa, flower, me, go, car, play/playground

Wednesday, March 9, 2011

Weekly Update

So on Sunday in nursery the kids were all sitting at the table having a snack. Cameron was signing that he wanted more fish crackers. The teacher game him some more crackers and he signed thank you. When she got to the next child that can speak he signed more fish just like Cameron did. It was so cute. It gives me a little hope that because the kids in his class will grow up with him signing it will be normal to them. They might even learn some of the signs too and he won't feel isolated like I am fearing.

In Cam's toddler class yesterday he signed coat on his own when he wanted to get his coat on to play outside. He hasn't ever signed coat with out being shown the sign before. He also signed black while reading a book with me the other day when he pointed to the black train. I knew that he can sign red and blue on his own but black is new. Cam also started saying "me" or "mine" a few days ago. It sounds like "may" when he says it, but this is great progress to have another word.

I have been going to my class called The Hanen Program. It is 1 time a week. I have gone twice. I think it will be good. A lot of the stuff I am already doing. Cam's case is different too. It's not that he doesn't want to communicate it's just that he really has a hard time learning to verbally. But I will continue to go and get any info I can that will help him.

He has also started a little bit of the terrible two's. His pout is to die for though. It is really hard not to laugh at him. He drops his head in despair when things don't go his way. I will win this battle though. He also says NO in a really naughty tone. I have tried to reply with "you need to talk nice to mommy" instead of using words like, "Don't talk like that". I don't want to ever use the words "don't talk" in any conversation with him.

Wednesday, March 2, 2011

Follow up on Prayer

So tonight I had Cam give the prayer for dinner. I looked up some more words like blessing that I didn't know. He did such a cute job. When I put him to bed tonight, he jumped up on his bed and immediately signed Heavenly Father. It was so cute. He has only done the signs a couple of times and he already remembers it. He wanted to say his prayers again. I really think he loves being able to communicate and participate in life. I can't get over how cute he is. I counted yesterday and he knows 27 signs on his own now. I am so impressed with how fast he is learning them. What a blessing!

Monday, February 28, 2011

First Prayer

Yesterday in nursery I felt really bad because at the beginning of the lesson they asked the kids who wanted to say the prayer. All the kids jumped up and down in their seats shouting "me". A little boy about Cam's age got up and with the teachers help said the prayer, repeating almost everything she said. I got sad that Cam didn't jump up and down shouting "me". Even sadder that he wouldn't have been able to repeat even one word she said. I have been stewing about it the last 2 days. Tonight I thought...why can't he say a prayer? The answer is he can. I sat him on his bed and he folded his arms and started to close his eyes. I said to him, "no mommy's not saying the prayer tonight, you are." I showed him the signs and he followed. Heavenly Father, thank you, love you, name of Jesus Christ, amen. I knew all the signs for these simple words except amen (I'm going to have to look it up) so we folded our arms for amen. It brings tears to my eyes even thinking about it. He was so excited to say his first prayer. I LOVE being his mom!

Sunday, February 27, 2011

Lessons Learned while Blog Hopping...

I was blog hopping the other night on a couple blogs that are inspirational to me. The first was about a mom trying to figure out a diagnosis for her l year old. She talks about the struggles and blessings that come with raising a special needs child. I found myself really relating to a lot of the things she is going through. The things I have gone through with Cameron are different, but similar in some of the feelings I have gone through. The times you feel sorry for your baby, times of feeling sorry for yourself, and the times you realize the amazing blessings that come from your trial are the same.
From there I clicked on a link for someone else's blog that inspires her. It was about a mom who has 4 children. Three of the four have some sort of special need. From severe things to things like OCD and anxiety. Again I found myself completely relating to her story, her struggles and joys. I have the struggles with Cameron that we have been dealing with the last several months. I also have a son who was diagnosed in the last year as PDD-NOS with extreme sensory processing disorder. He is 8 years old and so fun to be around. He is a challenge and we work hard with tutors, speech therapists, behavioral counselors, and a center designed to help kids that are on the spectrum. We have a great support system in place with him. It is hard work, but we are managing it. I also have a son that has OCD, anxiety, and a pretty good temper. He is mostly managed at this point but we see OCD's ugly head get in the way occasionally. He is aware of it and fights hard not to feed into his OCD thoughts. I still worry about him though. I have 2 sons that at this point don't have any real issues and they keep us together. They are my first and last child from my first marriage. They are both extremely helpful on a daily basis, as are the other kids with struggles. It was just interesting to read about someone in a similar situation.
The last blog I linked to was about learning to live with grief in your life. Her child died a couple of years ago. She has a blog that connects people with all different kinds of loss. On January 22, 2004 my husband was killed instantly in an accident at work. I was 26 years old with 3 little boys. The day after he died I found out I was pregnant with my 4 baby, a son that I named after his dad.
As I sat there reading these blogs and relating to each one that I clicked on I had several thoughts come to mind. The first being how ridiculous it really is that I can relate to so many really sad and difficult trials. Each one of these trials is enough for any one person to handle. In the beginning I was feeling sorry for myself, but at the same time laughing at what a joke it really is. But as I thought more about it I start remembering how many blessings have come about from these trials and also the tender mercies during the trials.
It all started with Jake's death. The first blessing being the news that I was pregnant. Jacob Jr. has been a miracle from the beginning and is an angel that walks this earth. People are drawn to him everywhere he goes. He has been the easiest child to raise. He helped the healing start in all of our hearts when he was born and continues to bring happiness continually. I can't say enough about the blessing of Jacob. There were several more tender mercies to come in the coming months. My house sold, the farm was taken care of, the pregnancy was easy, and I was provided for financially by Jake death benefits. The biggest was my family. They moved in with me until I sold my house, and I moved in with them when it did sell. We were able to live next to each other while I was struggling as a young widow with 4 young children.
A couple years later I met Curtis. Our marriage came with blessings and trials. He also had 4 boys, so when we married we had 8 boys under 8. It was crazy and hard but a lot of fun. If I'm being honest the first 2 years were extraordinarily hard and I wondered if our marriage would last. We worked hard and have an amazing marriage now. Reading the Book of Mormon together quite literally saved our marriage. The last few years have been great and have brought so many blessings. We had Cameron on July 2, 2008. He was sweet, easy and bonded us as a blended family. He is happy all the time. I adore him completely! We moved into a neighborhood that we love. The kids have friends and I have amazing ladies that support me as well.
Last year when my son was struggling in 1st grade I started to notice things that weren't quite right. It took 9 months to get his diagnosis but we still saw blessings through out it. My friend gave me a book called, The Out-of-Sync Child. It changed my life and helped me realize what we were dealing with. I could have written the book. It lead to our finding so many things out with him and started us on the path of really helping him. When he was diagnosed the Doctor found out what elementary school we attend and informed me that we are in one of the top 4 schools in the state that offers services for kids with PDD. I knew that was the reason we felt so strongly about moving here 3 years ago. The school provides speech therapy 2 times a week for 30 min. a social behavior class once a week and his teacher allows him all his OT that helps him concentrate. He chews gum during class, sits on a yoga ball instead of a chair, has a box of food in the room he can eat from anytime he needs to, and runs laps outside when his anxiety gets him acting up a little. It is great! Curtis has been amazing in helping us and thankfully we are in a financial position to afford all the support team we have for him. His tutor has been with us for 2 years. She comes 3 times a week for an hour. She retired last year from teaching and has been substituting for Jordy's teacher when she is gone so that he doesn't have to adjust to new substitutes. I found out recently that she has been volunteering in his class almost everyday and privately helping Jordy get his work done each day. She isn't paid for it and didn't even tell me about it until Jordy mentioned it. When I inquired about it and told her I was concerned that she wasn't being paid for it she responded by saying, "that's not your concern, I enjoy doing it and he is improving so much quicker now. I want to do it." Who does that?!? She is amazing and I know is a huge blessing in our lives to help me get through each day!
In November I found out I was pregnant again. We were a little surprised, but I was very excited. November was when I really started to worry about Cam as well. We got his diagnosis at the beginning of January. I knew that I got pregnant when I did because if we had known about Cameron we would not have had anymore kids. I would have felt like I had more than enough to deal with and we shouldn't be adding stress. I feel strongly this is another one of my biggest blessings. January is always hard for me. The weather is terrible and it's the anniversary of Jake's death. Between the two it is really hard for me to get through. But this year we added Cameron's diagnosis to the stress. On January 19th the 15 year anniversary of Jake and I's first date and 3 days before the 7th anniversary of his death I found out the baby is a girl. Our first girl in 10 kids. I have been praying for a daughter for 14 years. Having a baby girl doesn't make any of my stress go away. It doesn't fix Cam or Jordy's problems. But it adds a spark of excitement that can bring up my spirits when I'm overwhelmed. The timing of it was a huge blessing.
The timing of Cameron's diagnosis was also a blessing. If he had been diagnosed when he was a baby they would have told me that he most likely would be mentally retarded, maybe never walk or talk, and having seizures daily. Well, he is not dealing with any of that except his talking. Also, to be dealing with that and getting Jordy's diagnosis at similar times would have sent me over the edge.
The biggest blessing is my faith and testimony in the Lord Jesus Christ. The healing powers of the Atonement have saved me over and over. My relationship with Heavenly Father gets stronger as I trust in Him and accept His will in my life. I have had many spiritual experiences that have strengthened me through the last 7 years. I know he loves me and helps me through it all.
I hope this doesn't come across as a pity party. It is more of a testimony that even when it's tough there are good things happening all the time that help us get through the tough times. There are numerous more tender mercies over the years but I have to go to bed sometime, I have a busy day tomorrow!

Friday, February 25, 2011

Signing Time

When I was in High School I was sitting in our church meeting and there was a deaf group there doing the program. As I listened and watched the program it became very clear to me that I wanted to learn sign language. I talked to my Young Women leader and asked if I could learn sign for one of my projects. I signed up for a class through the Jordan School District. I learned some basic sign and loved it. The next year when I started school I entered the cosmetology program. There was a deaf girl in my class. I figured that was why I felt so strongly about learning it. My friend and I became friends with her and we loved practicing our signs with her. She could read lips so she really helped us learn a lot.
After I was married to Jake, my late husband, I took another sign language in college. He worked in the evenings so after my other college classes I went to the sign class. He told me one day that it bugged him that I was taking sign. When I asked why he said he thought I was being prepared and we would have a deaf child or something like that. I laughed at him and told him he was crazy and that it was a fun hobby.
I haven't signed in years and if you had asked me 6 months ago if I remembered any of it I would have said NO. The amazing thing is that as soon as we started signing with Cameron and we got the diagnosis it has all started flooding back. I can remember all of it. It has been so awesome to have this blessing. I already feel so overwhelmed by what he is dealing with. I can't imagine how stressed out I would be if I didn't have any background in sign. We have been watching Baby Signing Time and I have some apps on my iPhone that have been helping too.
I have a lot to learn, especially if it ends up being Cam's main form of communicating throughout his life. I am just so thankful that Heavenly Father prepared me in many ways before all of this happened. We plan on having some classes for my family so everyone can learn some sign. I also think I will enroll in another college class in the next year to learn even more.
Right now Cam signs, thank you, please, more, milk, drink, and food on his own. He also mimics most things I show him. He knows several other signs he just doesn't use them with out being prompted yet. The other day he was trying to tell me something and he started playing with his hands and fingers. I could tell he was trying to figure out if he knew the sign for it. He has loved being able to communicate with me. When I finally figure out what he wants he shouts "YEAH". It's obvious he is thinking finally you figured it out. It's really cute. My family has been awesome in wanting to learn signs and support him so they can all understand what he wants or needs. I am going to try to figure out how to post some videos of him signing. It really is the cutest thing:)

Wednesday, February 23, 2011

Cameron's Story

Cameron was born on July 2, 2008. He was a beautiful happy baby. Cam is the ninth boy in our family, but the first born to his parents Curtis and Julie. We were so happy to add the "ours" to our "yours, mine and ours family". We blended families in 2006 both having 4 sons. All of the boys were so excited to have a new little brother in the family.
I delivered Cameron after a 13 hour (natural) labor at 2:07 weighing in at 7 lbs 2 oz. on 7-2-08. I thought he must be a very lucky baby to have that many 7's. Everything went great. Cam was darling. We had a normal 3 day stay at the hospital and came home to love our little one. Cam was my 5th baby so I figured I knew what I was doing. He had a very hard time nursing though. My milk wasn't letting down for him and he had a very hard time latching on and sucking. I took a lot of supplements to enhance my milk but he wasn't gaining weight. I was determined to nurse so my Doctor allowed me to continue to try everything before we went to bottles. There were times I sat and expressed milk into his mouth trying to get him to nurse better. When he was about 3 weeks old he started fussing. Up until this point he had been very calm and easy. I knew he was starving and I gave in and gave him a bottle of formula. I have never been able to pump so I knew that wasn't an option. It took Cam about 1 week to completely refuse to try to nurse anymore. I accepted my fate of bottle feeding and we moved on. (I have to admit it was so nice to bottle feed a baby!) At the time we didn't think much of this problem. I figured it was either me, or maybe he was just a little lazy.
Cam didn't smile as soon as my other boys and not as often but he eventually did. He was the best sleeper I had. Very content and quiet little boy. I figured he accepted his fate of having a lot of brothers and was happy to be along for the ride. He was a little late with some of his mile stones but soon would get to them. The first five months his head would always flop to one side and the back of his head was a little flat on that side. It was very difficult for him to move it to the other side. But this too soon corrected itself.
Cameron was a little clumsy...well very clumsy. When he began to crawl he would very often fall forward and hit his head on the floor. He rarely cried or even noticed it, even when bumps and bruises were left. He would just pick himself up and continue on his way. I remember my brother commenting on how he was the toughest little kid and that he knew all his boys would be that tough. He fell all the time and would run into things that were right in front of him. This bugged me but the Doctor felt like he may just have low tone and would grow out of it. When he started to walk it was much different than my other boys. His first steps were on Halloween. He was 16 months old. Usually after the first steps it is only about a week or so and they are all over the place. Cam stayed with his 2-3 steps for 2 months. It was around Christmas that he started putting several steps together. He was 18 months old. I was concerned again but, he was walking so there was no real reason for alarm. I knew at 18 months he should have several words and maybe even be putting 2 words together. He wasn't, but he had been focusing so much on walking. The Doctor and I figured he would start picking up words now that he had the walking down. He stayed VERY clumsy. Falling all the time, walking into walls, falling off of everything. We made a few trips to the Doctor thinking he broke his neck or had a concussion. Everything was always fine. He didn't start talking. I was always worried about him becoming the spoiled youngest child that didn't need to talk because his brothers did it for him. I tried to avoid letting him grunt and point. I taught him a few signs like please, thank you, food, and drink so that he at least had to ask. He got very good at getting what he needed on his own. He would pull the stool over to the cupboard, climb as high as he needed and get down what he wanted. He would bring me boxes of cracker or his sippy cup so I knew what he wanted. I would try to have him say the first sound of the things he wanted as well. With all our efforts he didn't talk.
When he turned 2 he only had a couple words and never used them on his own. He could say mama, but only when prompted to. I hadn't ever thought about the fact that he never really even babbled like a normal baby would. I always just enjoyed how sweet and silent he was. At his 2 year old well child I lost it in the Doctor's office. I cried and cried that I knew something was wrong I just didn't know what. I had had a bad feeling since I knew that I was pregnant with him and it never went away. I knew I was probably just looking for my next trial and was always worried about something bad happening. (My first husband died and after something that traumatic you tend to get a little paranoid.) The Doctor reassured me that we wouldn't miss anything and that he was just fine. We decided to start Cam in the early intervention program and get him some speech therapy. They tested Cam for several things including his hearing. He scored high in everything except his expressive language. His hearing was perfect. They did notice a tongue forward motion and said that his speech delay was most likely from low tone in his mouth. I now knew that was the reason he couldn't breastfeed. Cam had his tongue sticking out all the time. I just thought it was a cute habit, he had done it his whole life.
At first speech therapy was 2 times a month. Cam enjoyed it and would occasionally even get a simple word like "up" out. Usually he didn't get the word we were looking for, but he always tried. We tried strengthening his tongue with hard licorice and beef jerky. I took away his binki and switched from regular sippy cups to straws. After about 4 months I was in his nursery class with him at church. We were sitting down in a circle with the other kids. There was a little boy that is 4 months younger than Cameron and was premature and has several delays look up and say, "I want mama". Well, that was it. I knew something had to be going on with Cam. He had been in speech for 4 months and had not progressed at all. I talked to the speech therapist and told her I was getting very concerned. She agreed and expressed that she was concerned as well. She did some research and some testing and decided that he most likely had Speech Apraxia. I took him to another speech therapist and she confirmed the diagnosis. Speech Apraxia is similar to an adult who has had a stoke. He understands everything and knows what he wants to say but can't get his mouth to say it. They also noted that he had overall low tone in his body, especially in his mouth.
I called my Doctor with the information and diagnosis and he wanted to see us immediately. He was concerned with the diagnosis saying, "it is very rare and a brain issue". I said I know that, but told him I had a second opinion and it was really the only thing fitting. He decided to order an MRI immediately to rule any brain issues out. Apraxia would not be picked up on an MRI but other things would be. We did the MRI 3 days later. I got the phone call from my Doctor Dec. 21. "The MRI came back abnormal" he said. My head started spinning. "The neurologist thinks he may have a seizure disorder and we need to do an EEG. Call Primary Children's hospital tomorrow and set it up." I called the next day and we set it up for the week after Christmas. It took 1 week to get the results back. They were normal. We got an appointment with the neurologist 2 days later.
I went in assuming he was going to inform me of the many months of tests we would do on Cameron to figure out what was wrong. The Doctor came in and pulled up Cam's MRI. He said, "do you see these two spots right here in his brain?" We could see them, they were very obvious. "Well they shouldn't be there. Your son has Periventricular Nodular Heterotopia." He went through what that meant. Apparently when Cameron's little brain was developing in the first weeks of the pregnancy there was pieces of grey brain matter that didn't migrate to where it was supposed to go. It stayed in the center of his brain connected to the ventricle.The noduals of brain matter highjack electrical information. They can highjack anything and everything. His is highjacking the information his brain is sending to his speech center. The bad news...well, they have no cure. There is absolutely nothing they can do for it. No medicine, no surgery. He told us to do intense speech therapy, as often as we can handle and teach him sign language. There is no way of knowing if he will have 10 words, 100, 1000 or be able to eventually speak normally. He may need to use sign his whole life and he may need to use it just for a few years until we can build up his vocabulary. The good news...70% of the time kids with PVNH are mildly to severely mentally disabled...Cam is not!!! 82% of the time kids with PVNH have a seizure disorder that is not very treatable...Cam does not have one, (at this point). The nodules not only highjack information but they also send out misfires of electrical waves causing seizures. Cameron could eventually develop them in the future. The neurologist said to contact him if that happens. We will only see him a couple times a year until then, because he can't treat anything but the seizure disorder.
The future. We have no way of knowing what else his PVNH will block. We won't know until we get to new levels of development. It could cause problems with reading, math, comprehension, or any number of other things. We will have to find out as we go what we are dealing with. Right now it's just his speech. Cam can sort shapes and colors. He loves to look at books. He comprehends everything we say and follows directions better than most little ones. He is learning sign language very well. It is darling to see him sign. He has about 8 words that he uses on his own now. He tries everyday to communicate with everyone around him. He is in speech therapy once a week and has a toddler class once a week as well. I am starting a new program that helps train parents to communicate more effectively with their delayed children. I will do everything in my power to Break his Silence! This is Cameron's story.