Wednesday, January 25, 2012

A Year To Remember

I think the year Beckett turned two was probably the most stressful since we learned of his milestone delays.  We had no idea that the financial burden of therapy, doctors visits and prosthetics would have on our family.  Our pediatrician referred Beckett to the Blue Bird Clinic at Texas Children's Hospital to see another pediatric neurologist.  The doctor called and expedited an appointment for us.  Instead of the six month to nine month wait he got us an appointment for about 3 months out.  In the meantime, we kept chugging along, going to therapy and working with him at home.  He was making very little progress and it seemed that new things were coming at a snails pace.   At times I found myself crying myself to sleep, praying to God that He would heal my little boy.  Some nights I would get maybe 3 - 4 hours of sleep and going to work the next day running on "fumes". The emotional toll was also showing at home and at work. I needed answers! I couldn't wait to get into an appointment to see a doctor who could tell us what to expect an where to go from here. 

After a wait that seemed like forever, we finally got into see a doctor at the Blue Bird Clinic.  It was a relief just to be in the waiting room.  But that feeling would soon fade into worry and more anxiety.  I showed up with my husband, Beckett and Pyper his twin in tow. We then waited in the exam room with two chairs, a patient table and a computer. Trying to keep 2 years old twins occupied for 30 minutes was a challenge in itself.  FINALLY!! A knock at the door!! She peeked in and introduced herself.  Low and behold she wasn't a doctor, she was a Physician's Assistant. Don't get me wrong, I was glad we were in, but disappointed the it wasn't the "neurologist".

 I guess it's selfish and I should be grateful but the frustration of everything had gotten to me.  After the introductions we continued to share our concerns with her.  She was taking details notes and making observations of Beckett while he was fussing to get out of there.  The level anxiety rose as she began to explain that she was going to recommend genetic testing and an MRI under sedation.  Several of the genetic tests she recommended to have done were rare disorders that either caused a child to have a fatal consequences and or one that would cause him to be needing round the clock care for the rest of his life.  Even though she reiterated that these tests were to rule them out, there was no guarantee that he would not have one.  Some of his symptoms were part of these disorders and the question was there that needed to be answered.  The one genetic test I fear most was the Rhett's test.  This genetic disorder caused boys who had this fatal disease, even mildly only lived a life span of 10 years old.  I couldn't imagine my boys mid-life at 5 years old.  The other tests that she had ordered was Fragile -X, along with about 129 genetic metabolic disorders and a chromosomal karyotype.  My husband and I cringed at the thought of how much all these tests were going to run and "go figure" if insurance would ever pay for them. 

We had to wait almost 3 torturous months for the genetic results to come back.  During this time I spent hours upon hours doing research on the Internet.  I was looking for answers that never seemed to come. I would cry at school and cry at home praying for the tests to be normal. We were still waiting to get a MRI.  Beckett was continuously sick with a cold or ear infection.  After about 3 tries to get him to Texas Children's for an MRI, we got him in.  I hated that day too.  He had to be put under anesthesia for an MRI to get a conclusive view of his brain.  I almost passed out when they gave him the drugs that put him under.  My husband was holding him while they administered the drugs.  He fell limp.  I hated watching that.  I had a sick feeling in my stomach watching him be carried away. It was a successful scan and they told us the results would be read in about 3 days. Again the 3 longest days I had in a long time. 

That day finally came, the moment of truth!  We had the results of the genetic testing and the MRI. The PA called us with the results.  She said all the genetics tests were all NORMAL!! I felt my chest fall in relief. She had the neurologist look over his records and some of the best news of hope I had had in a long time.  He said that there was a discrepancy in his MRI. He explained that the myelin, or white matter in his brain was at 50%.  A typical 24 month old has approximately 90%.  Myelin is basically the plastic covering that insulates an electrical wire. This disorder made it difficult for him to make connections.  My heart then fell again. The emotional roller coaster is exhausting, you never know how or what to feel.  The hope then returned when the doctor said that he believed with massive amounts of therapy and lots of patience, he thought that there would be an 85% chance that he would be fully functional by the time he reached the age of  6 or 7.  I bank and pray on that hope everyday.  This is something I haven't forgotten and hoping that this time the doctor's right.  Of course we will see, because there are changes everyday, both good and bad.

Monday, January 23, 2012

Year 2: Future Unknown

The second year of Beckett's life was full of uncertainty. He was now in therapy through ECI (Early Childhood Intervention) and making small steps to improvement with his motor skills. He began walking with a walker that helped him develop his lower body muscles. His therapist was an ex-marine and her demeanor and motivation techniques did wonders with him. He is a stubborn, bull headed little boy and a bit spoiled.  Sometimes I thought she was too tough, but I understand now that was necessary to set an expectation for him to meet.  Just because he was slow, didn't mean he couldn't learn.  Repetitive commands and hand over hand help made him see he could do on his own. 

Besides our concerns of his motor development came concerns of his cognitive development.  He had and occupational therapist and a play therapist that came to work with him on a weekly basis.  They taught him to hold a cup, turn pages of a book, use a crayon and many different type tasks. A normal toddler typically would just pick up by just watching someone or shown how to use these things with ease.  Beckett was not interested in toys or even watching cartoons on television. Most of the time he wondered aimlessly around.  Almost seemed like he was in his own world, investigating what was around him.  I almost thought he was on a different level than some typical children. At least that is what my "gut" said to me.  My husband and I became very concerned about his ability to learn.  Processing a task took him a long time, not just minutes, but days and days of repetitive working at it.  I found my self saying words to him hundreds of times a day.  I think I dreamed about "more", "juice", "milk", "eat", for months. I felt helpless sometimes when he was not getting it.  I just wanted to quit.  I guess God knew what he was doing, because just when I wanted to give up, relief came when he would make sign or say a sound that was close to the word.  He probably only had about 5 words he signed or sounded during his first two years of life.  His frustration level was incredibly high and I felt so helpless.  I was doing all I could and some days I was just spinning my wheels.

I began doing research online and talking to doctors about his condition.  Of course no one had any definite answers.   I struggled with the thoughts of him not ever being a productive independent person in our society.  I worried about who would take care of him if something would happen to me or my husband.  I ask questions like,"Would my older children have to help him if I'm gone? & Would my extended family be able to help provide the therapy he needed if I wasn't here?" I had to let go of those thoughts and believe that God had a plan and I am included in that plan to take care of him. I struggled with depression all the time.  But somehow, someway it was short lived, because Beckett would do something new that would make the hope return and it was going to be ok.

I will never forget an afternoon that gave me much needed hope and a new faith that God does listen to prayer and answers it.  I went to pick up the twins from the daycare, I saw Beckett sitting looking outside the glass door that led to the play ground.  He turned and saw me walk in and smiled a big smile like he usually does.  His teacher and I were not expecting what came next.  He pulled up on the door handle and took a step, not just one but he kept walking all the way across the room to me.  I dropped to my knees crying. I grabbed him and hugged him.  I could not believe that my little boy was walking.  His teacher, Ms. Claudia also broke down and cried. She was also a part of the many people helping him over come his obstacles. The excitement spread through out the building and all of his former teachers came to see him walk.  I was relieved that he was progressing. I knew that after I was praying for months for him to walk that God answered one of my many prayers for him. He walked at 22 months, exactly two months before his 2nd birthday. It was a joy I will never forget. These are the moments that keep me going when I fall into a "rut" of despair.

Friday, January 20, 2012

Our New Normal

After a year of no "real" sleep and dealing with new situations that arise everyday, life wasn't just day by day, it was minute by minute.  Sometimes dealing with the frustration of a child that cannot communicate is just pure hell.  The constant screaming is tormenting. Breaks away are necessary to maintain a sense of mental calm.

I kept asking God why did you allow this to happen to my little boy? I was angry at God.  It is a horrible cycle of frustration, anger, guilt and depression.  I couldn't feel that way long because auto pilot would kick in and remind me I had to be determined to get through this and only God could help me do it.  I'm not just saying that because it "sounds" good or it the "Christian" thing to say, I truly believe that.  It's just the human side of me that forgets sometimes, ok...a lot of the time. He is there just waiting for me to depend on His strength. 

I never knew patients like I have experienced raising a child with special needs.  I remember my mother use to always tell me, "don't pray for patience, pray for understanding."  So I did.  I was praying asking God to help me understand what it was I needed to do to get through this.  Looking back on Beckett's first year, I realized I had learned many small lessons of life. The small things you do are really the stepping stones to what makes life livable and have purpose.  I still to this day struggle with my purpose.  I know I'm a mom of 5, a wife and a teacher, it just seems that life throws things at you that you never expected and you lose focus of your purpose. 
I know now that my purpose changes daily.  I am finding myself learning sign language, being a physical therapist, occupational therapist, and being more in tune to the needs of people who have special needs.  I find myself more compassionate and empathetic for those who can't do for themselves. However, I do still get frustrated and go through that normal cycle I mentioned earlier.

I tend to come back to a statement that was told to me by a very wise seasoned educator I work for. As I was explaining to her some of my daily struggles, she said "Monica, God gives us a new normal on occasion, we just have to trust Him to get us through it and find ways to modify".  She was right, I keep changing and adjusting to my "New Normal".  Thinking like that helps me get through the hard times and knowing that it's only temporary because the next "New Normal" is around the corner waiting.  Beckett himself has a new normal everyday.  I know that every milestone he makes is his new normal.  We are all on this road together its just his is a bit more bumpier than mine.

Thursday, January 19, 2012

My Biggest Question....Why?

Dealing with the emotional shock of finding out that our beautiful blond haired, blued eyed, smiley faced little boy had so many problems facing him was devastating to us.  The questions of course began to race through my head of why this was happening to our family.  I would look back at the things I could have done for this to happen. I wondered what I had done wrong.  Did I not eat right, pray hard enough, read my Bible enough, not be the best person I could be? It was like a broken record playing in my head over and over.  The frustration of the unknown lingered and never seemed to subside.  I ask God many times "why" and the answer never came.  I had to teach myself everyday to let go and do the best with what I had to give my boy, while at the same time providing support and attention to my other 4 children.  It seemed like a whirlwind had taken over my life. I was out of control of my own life and I didn't know what to do.

Reprieve came when we received help from the ECI program for Beckett when he turned 8 months old. They provided physical therapy, occupational therapy, and play therapy for him two times a week at daycare. This helped us financially by qualifying us to be on their sliding scale to pay for his monthly therapy.  It also kept my husband and I from taking off work and bring him to another location for therapy.   Before Beckett began therapy we wasn't crawling, turning over well, he could not feed himself finger foods or hold a sippy cup.  He also did not babble like normal.  He did however have a scream that would set off our broken glass alarm.  My husband playfully said he was an "X-Man" and had "X-Man Powers".  That piercing scream would make the hair on the back of your neck stand up.  On the flip side to that he has a contagious laugh.  When he laughed, everyone laughed with him.

His therapy began to help is motor skills and coordination develop by the time he was 12 months he began to scoot on his rear end and was attempting to try and crawl.  We learned through the therapist that every motion he made had to be taught to him.  Hand over hand was key to his success in developing his motor skills & coordination.  On his one year well check we received a recommendation from his pediatrician to have Beckett be seen by an ENT for the continuous ear infections he had since he was 3 weeks old. He also had a concern about his hearing, since he was not talking yet.  He had a numerous hearing tests done, which thankfully were all normal. He and his twin sister both had ear tube surgery the same morning. This seemed to reduce the number of times he was sick. 

Beckett first pair of SFO's before be began walking
A few weeks after ear tubes were put in we found out from his physical therapist his feet are pronated and turn in. He has no arches, he has "flat feet".  This causes problem causes him to lack balance. She recommended him to get SFO's.  These types of braces came right below the knee and were custom fitted by casting.  Keeping a busy boy still for that was a three man job, one to hold his arms, one to hold his legs and the other to cast them. He wears these braces all day except when he his sleeping.  We also found that this was just the beginning of the many appliances and prosthetics he would have to wear. Another finanical hit to us.  These braces run about $2500/pair that must be replaced every 6-8 months, depending on how fast the feet grow.  Needless to say, my husband and I were saying...How much more can we take?...Looking back from now...so much more than we expected.

Wednesday, January 18, 2012

Beckett's First Year

During Beckett's 6 month well check the doctor said that he would need to have an occupational therapy evaluation to check for a condition called hypertonia.  This is a neurological disorder that causes the muscles in the body to lack tone, which results in weak muscles and muscle spasms that cause them to be rigid and stiff. The hypotonia also caused him to have lazy eyes. This then sent us to a opthomologist at Texas Children's Hospital in Houston.  Beckett had to wear a patch on each eye, every other day for 1 year.  He was also being treated for acute acid reflux and taking prescription medication daily. We found out later that all these were symptoms of the hypotonia. We were also referred to a neurocrainal surgeon to treat the a condition called phagiocephaly.  This is plainly called "flat head syndrome".  He had to wear a custom fitted helmet for approximately 11 months.  That was approximatly $4000 that we fought the insurance company on for almost a year.  Of course they never paid.  We were very blessed to find out that the company who fitted him with his helment forgave $3000 of its expense after we paid them $1000 cash. 

Beckett at 5 months old before his helment
On top of the the neurological and the undiagnosed global delays, he was sent to see a neurologist for possible signs of seizures.  He ordered a CT scan and EEG Test.  Good news finally! No seizures or abnormal electrical impluses coming from the brain.  Needless to say, this was just the beginning of all the specialist my son would have to see during the first part of his life.  Our frustration was building to try and find answers to why he was having these problems and looking for someone to tell us.  In the mean time trying to help him the best was we could. That was getting him help through OT at Texas Children's, and eventually through our county ECI program. The emotional toll was starting to show in both my husband and I.  We were trying hard not to think about the financial impact this was going to have on us and our family.

Tuesday, January 17, 2012

The Beginning of Beckett's Story

About 5 years ago my husband and I decided to have a baby.  I also had 3 children from my first marriage. Since this was my second marriage and my husband had no children of his own and I wanted to give him children. However, we had an obstacle that we had to overcome.  I had a tubal ligation when I was 28 after my 3rd child and it was medically irreversible. We decided to take a chance with IVF to have a baby.  After all the initial testing and finding everything was normal we proceeded with the regiment of shots and the stressful emotional ups and downs of going through IVF.  We were very surprised and excited to find that of the 3 embryos we implanted, 2 of them made it.  We were having TWINS!! 
During the pregnancy we had several frightening experiences of losing them.  I prayed the God would protect my babies and keep them healthy bringing them to full term.  I was on bed rest for a total of 19 weeks.  I held on with them until I gave birth via C-Section at 36 weeks and 6 days.  My baby boy was 6 lbs. 13 oz. and my baby girl was 7 lbs. 2 oz.  Both were healthy and came out screaming.  We were so happy about our new additions to the family.  
The first 3 months were no doubt a sleepless fog.  We had help from family and friends that gave us breaks every so often to allow us time to get at least 5-6 uninterrupted hours of sleep. I still have trouble remembering that year and how we ever made it. 
This year was an eye opener and I never expected to have this path of difficulty set in front of me.  Raising young children before I knew what to expect when an infant should be meeting basic milestones during that first year and so on.  The first few months of the babies lives I didn't think much about whether or not they would meet these milestones. This could have been because of the lack of sleep and working full time teaching.  But as the twins began to get older I noticed that Pyper, my baby girl was right on target with sitting up, crawling, and had a keen interest in her toys.  Where as Beckett, my baby boy could not hold his head up well or sit up on his own after 4 months without being propped up by a pillow. I started taking mental notes of some of the odd behavior he began to exhibit. He screamed during every bath time and could not focus on toys or hold them in his hands. His muscles were very rigid and stiff. He would lie on a changing table for a diaper and he was stiff as a board.  These small things that most people might overlook, wrenched my inner most maternal instincts. It felt to me that something was very wrong with him. I knew I was right when the pediatrician became concerned at his 6th month well check visit. I didn't realize that this was the beginning of a journey I never thought I would have to take. I know God has a plan and I am in the beginning of this plan trying to find out where I fit into it and where it will lead me, my son and my family.