Trying To Hang On To Hope....

Considering all the trails that our family has had to face in the last several months, keeping up with my blog as been hard.  We have had many changes in the last six weeks for Beckett.  He will begin Monday with a new daycare sitter.  We have had to move him from his regular daycare he has been at since he was 3 months old due to the change of some of his class situation, therapy and school schedules.  We were not happy with the new teacher arrangement in his class at his daycare.  They seemed to be too young to be able to deal with the needs that Beckett has.  We were very disappointed that this was not fixed or changed for us, considering we were paying for a full time program when he was only in there part time. I do however have to clarify that most of the workers there were great with him.  They were typically older women and not teenagers or college students caring for him.  We now will have him with a lady who will keep him in her home, but she is also one who has a special needs child herself.  We are nervous somewhat, but praying for the best and hoping that she can deal with his needs.

We have had some regression with his potty training due to the fact that the girls in the daycare were not paying attention to checking on him to go use the potty.  He has a hard time remembering he needs to go and needs some reminders every hour or so.  He has started trying to say a few more words and sounds which is encouraging.  We still are trying to teach him the dynovox, but at home he seems uninterested in using it.  He has mastered several icons for needs and food on it with his speech therapist.  We know he can use it, we just need him to understand using it for his needs. 
Texas Children's Genetic Center still has not called us with the results of his EXNOME DNA Sequencing Test.  I have been patiently waiting for some kind of answer.  We are also trying to get Beckett into see a psychiatrist to have him evaluated for a behavior problem that is causing his melt downs.  We are hoping that they will give him something for his OCD/High Anxiety Behavior.  His fits seem to be getting worse has he gets into the stage of the terrible 2-3's that his little brain is entering, even though he is 4 years old.  We have noticed over the last few months he is more interested in toys and musical instrument's that seem to keep him entertained.  We are hoping the we will get to implement music therapy in his daily routine in the PPCD program at school.  We are seeing slow progress with him..I just still have anxiety over what the future holds.  I pray almost everyday that God would heal my little boy...I have to admit that it has been hard to hold on to hope, but I know there HAS to be a PLAN..

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Potty Training & etc...

I have no idea even where to begin.  Do I start with how we are going with potty training or do I start with the transition time from daycare to the house during the afternoon?  Umm....well these two particular events have been the hardest thing I have ever had to do in my life. I actually thought that teaching middle school was much harder.  Boy, was I totally wrong!!
Potty training with Beckett has been quite difficult.  Getting him to tell us he needs to go is the hardest part. We have a digital voice box that has a button he pushes that his PPCD teacher has recorded the message, "I need to potty".  When we first put it up I think he pushed the thing 200 times.  Of course, this helps us know when he needs to go; if he'd use it the right way. We began to bring him every 30 minutes when we can.  Beckett can control himself for the most part, but its getting him to try and complete all the steps that's hard.  Due to his lack of motor coordination, he has a very hard time pulling his shorts and pull-ups up and down.  He knows to do all the steps, which is the frustrating part for me also.  Since summer has begun Beckett has gotten better about having fewer accidents and letting us know he needs to go. I finally got around to getting a second voice recorder to the daycare.  Within one day he learned to let his teachers know he needed to go potty by pushing the button.  Funny thing is all other 19 children in his class did the same thing. I warned his teachers of the "new novelty".
I know he still has trouble coordinating his motor skills to master all the steps to go potty.  I never really thought about the process of something very simple to the average person as being a really difficult one when you think about it. So far, it's been a week and he has had only one accident.  Hopefully by the end of summer he will be able to let everyone know when he needs to go.

One of the Hardest Days Yet

I am skipping forward a bit through my walk with my boy Beckett.  Today was a day that I can't hold back from sharing my tears of sadness.  Today was a grueling day of testing for Beckett at Texas Children's Hospital.  He saw four different doctors that evaluated him for autism, psychology, developmental pediatrics and neurology.  After the 6-7 hours of testing we were told that they are taking the autism diagnosis away and re-diagnosing him with mild mental retardation. 

My heart sank to the floor..really it went below the floor.  I was being told that he would never be able to live independently or progress over the cognitive capacity of a 12 year old at best.  I was not expecting that at all.  It seemed that all the hopes and dreams I had for him vanished into thin air.  His dad and I couldn't hold back our tears.  It was a blast of information that I couldn't process in the hour we were getting all the feedback.  We were asked if we had a will to be able to appoint a legal guardian for him if we died, we were told he would possibly never be able to be left alone or take care of himself.  We got information on the process to enroll him in an adult program for the mentally disabled.  On top of all this information that he could have a genetic syndrome causing all of his problems. 

I am trying to tell myself that they are painting the worst of the worst of what it could be for his future.  I have told myself that only God knows the future for anyone of us.  I also know and am trying to believe that God can heal him and make is future as bright as my other children.  I have to believe and have faith in that.  Right now I have to honestly say may hope has been crushed and while I write this tears well up in my eyes.  My heart is crying out to the Lord to give me strength to endure this trail that has an uncertain path and believe that He will carry my husband and I through this.

Some Saving Grace

The 3 weeks Beckett attended PPCD was a sneak peek to what he was going to be introduced to for an entire school year. It was finally hope being realized. The road of over coming obstacles was just beginning. We set his IEP goals for the upcoming school year and were excited to see if he would master or even exceed those goals. His vocabulary was limited to about 10 -15 words. He mostly said "bye-bye" to everything. We set a goal to have him work on single step commands, like "pick up the trash" or "hand me the spoon". He also needed to begin to identifying items in sets of 3. We would ask him to point to the picture we would ask him about. Examples would be like, "shirt, pants or jacket". This was frustrating and disheartened to us at first because we could not keep his attention for more than 30 seconds.

He pointed to the beater..I couldn't refuse:)

His frustration level was over the top when he tried to communicate his needs with us and sometimes he would scream for hours. The whole time trying to guess what he needed. We knew that he did not qualify for a summer program through the public school system, so we took another financial burden on to bring him to speech therapy twice a week. We knew that if we didn't that he would not make small gains. We also had help for us to learn new techniques of communication with him in the form of signs, pictures and teaching him hand-over-hand skills at pointing to an object.

In the meantime, I was researching all I could to find out to why he was having these problems. I decided to take a scientific study I had read and use the information and make him my "little science experiment". This study was done somewhere in Europe, but it caught my attention. I figured it wouldn't hurt and maybe I would get some results over a period of time. We already knew that he has delayed speech and that therapy would be apart of his life for a long while. The scientific study I read had to do with a group of speech delayed children ranging from the ages to about 2 years - 10 years. The scientist made a small scientific break through with what Omega 3 & 6 oils do to increase the brain development in the area of speech. They recorded that out of about 650 children about 85% had a measurable increase in speech development over a 3 month period.

I said to myself "what could it hurt". I called my doctor and he was in agreement with me. He said that all children should take some form of Omega 3. Well, after that I went out to the store and bought a 30 packet months worth of fruit flavor gel packs to give him everyday. I noted that we started in June and continued throughout the summer months and along with speech therapy he began very short spurts of new communication. Most might see it as not measurable, but when a child that has almost no language skill signing more and pointing for more juice...that was a huge milestone. I knew that something was working, but I knew that once he began PPCD in the Fall he would make incredible gains. This was going to be his saving grace.

The Waiting Game

Trying to get answers to why Beckett has problems has found me searching every nick and cranny for answers. It is going to take a long time. It is very hard to accept there could possibly be no answer to what happened and how to fix it.  I struggle with that reality on a daily basis.  As long as I am able and willing to find an answer, I will not stop until I do.  I am not really a "conspiracy theorist", but sometimes I do believe the people that are in the elitist part of our society tend to know more than they let on about health issues.  I do think that sometimes information is only revealed in circumstances that ones closest to the research have some kind of conscious and end up letting the "cat out of the bag" and "taking one for the team".  Almost like the cigarette industry came out with research saying that cigarettes caused lung cancer.  I am learning more and more everyday that our health system and the way things are run by our insurance companies are strictly politically driven.  It can be very frustrating at times to think that a persons life is put second to money and political gain.

Beckett's ECI graduation 4 days before he started PPCD at Ault Elementary

 I have vowed to fight to the end for my son and any other child who has had to encounter the system who doesn't care about their well being and to fight for a cure for mental disabilities, autism, and other neurological disabilities that keep a person from living a life that is normal.  It is exhausting to deal with a child that has disabilities and finding respite to have a somewhat normal existence.
However, the tiny gains that Beckett makes become huge celebrations.  He began his new PPCD class 2 days after his 3rd birthday.  I will never forget the day that he came home from his new PPCD class an could suck through a straw!! Sounds crazy, but Mrs. Julie got him to drink through a straw in almost 2 weeks of being in his new class.  I was actually worried that he wouldn't do much of anything in his new class since the school year ended in 3 1/2 weeks from when he started.  I was so wrong..Other concerns were about his bus ride to the school from the daycare and overall cooperation with the teachers.  He learned a routine in a fairly short time and began to make more sounds. His teacher sent us a video of his progress. He was making sounds he learned while in class the short time he was there before summer started.  I cried!  I do believe that God sent a pair of teachers to take care of him and help teach Beckett.  They have also helped us to deal with Beckett's disabilities.  I knew that the new school year would be a huge benefit for him and was excited about the new things he would learn in the Fall.

Slow Moving Stream

We noticed that when Beckett would begin to make gains and advance a little, other characteristics would pop out in his personality. His tantrums became unbearable at times. Every time the front door opened and the chime went off, he raced to the door as fast as he could to go out. When he was about 30 months, we noticed that he became fascinated with water. This was a soothing activity for him.  His focus was scattered and when we could get his attention, it was only about 2 -3 minutes at a time.  I knew this was going to interfere with his learning. 

Our Little Water Boy

We were about 6 months away from enrolling him in our PPCD (Preschool Programs for Children with Disablilities) program at our local elementary school.  I was anxious to get him in so that he could have more regular and consistant intervention.  It was also feeling relief because the PPCD teacher was the wife of a coach my husband worked with.  But not only that, I had gotten feedback from other parents and employees that knew her and they said she was one of the best teachers in that position.  I knew she was going to take care of our boy.  In the meantime, we were waiting and preparing for his transition and were getting a better idea of how his progress should be moving. 

His therapist from ECI would tell us that development came in a particular order.  He would have to master his motor skills, both gross and fine before spoken language could be mastered.  He had a long way to go.  We were still trying to get him to eat with a utensil, hold an open cup to drink from and suck threw a straw.  He was able to walk upstairs, but not down yet and unable to jump.  It was heart breaking to watch him trying to jump. We knew he wanted to and just couldn't get his feet of the ground.  It was going to be a slow road a go. 

The funny thing is about his personality was all said in his name.  I had a hard time trying to find out what his name actually meant when he was a baby.  I ordered a Birthday Keepsake that had the information about his birthday day and it included the meaning of his name.  My husband and I weren't suprized to read that his first name means "Slow Moving Stream".  He was definaltly like a slow moving stream.  The one thing I think about a slow moving stream is that they start out slow  and as they move along their path then the end becomes a roaring wide river.  I know that Beckett will one day overcome his obsticles and become a strong determined individual that has many gifts to offer this world.  That is my prayer for him and I know that God will be faithful to answer it.

Family Impact

I guess no one ever really thinks that they will be blessed with a child with special needs. I do know that my son is a blessing to our family.  I feel like I am being refined for something, I just don't know for what yet.  I know that in time it will be unveiled and it will change my life for the better.  I do however, sometimes wonder why the "refining" has to be so hard. 

My family has had to learn and adapt to new routines and changing the way they do things for and around Beckett.  Him being a twin was hard because when we would do something for him, we also found ourselves doing the same for his twin, Pyper. I know she knows that he needs the extra help, but I still try an give her that little extra when I can. I feel guilty at times when I have to spend more one-on-one with Beckett and had to make Pyper wait.  Her need for attention is also very high. I guess every toddler craves every bit of attention from their parents.

Big Brother Sawyer Entertaining the Twins

We also ask a lot of our older children.  They help us out tremendously around the house.  Ok..in reality, they do sometimes have to be coerced to help.  On days we would come in from work we would have one of our teenage boys play with Pyper, while my husband or I would bring Beckett aside to work on sounds, making signs, or putting together puzzles.  At the same time, one of us would be cooking dinner for seven people. My other teenage boy would help me with chores and my oldest daughter helped when she could.  She was is at home going to college, working almost a full time job.  She would do house cleaning on days she was out of school or wasn't working early. 

Autopilot is common place in my life.  My five children keep me very busy. Four are usually in extracurricular activities. They have me running around to football games, practice, and therapy. It is all exhausting, but rewarding to see their successes.  I know that God has given me the strength to endure. Without my wonderful family I don't know how I would do it.  A friend of mine told me once that, "Children pick their mommies".. I know and believe that is to be true.  It sometimes is still day by day, but I know that there are going to be many blessings later and my hope still never fades for my special boy.

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.

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.

Beckett's First Year

During Beckett's 6-month well-check the doctor said that he would need an therapy evaluation to check for a condition called ‘hypertonia.’  This neurological disorder causes the muscles in the body to lose tone, which results in weak muscles and spasms that cause them to get rigid and stiff.  Hypotonia, we believed, also caused him to have lazy eyes, or strabismus. This then sent us to an ophthalmologist at Texas Children's Hospital in Houston.  To lessen the effects of the affliction, Beckett wore a patch on each eye, every other day for one year.  He also was treated for acute acid reflux, and taking prescription medication daily. We found out later that all these were symptoms were the result of the hypotonia.  Further, we were referred to a neurocrainal surgeon to treat a condition called phagiocephaly, also known as "flat head syndrome."  Custom-fitted for a helmet he had to wear this for almost 11 months. 

Simultaneously, insurance claims were being challenged.   For treatments, tests, and specialists so far, we were receiving bills upwards of $4000.  To no one’s surprise, the insurance company denied the claims.   Back-and-forth we went for almost a year.   We were however fortunate to learn that the company that fitted him with a helmet waived $3000 of its expense after we paid them $1000 cash.  But still, bills were adding up. 

Beckett at 5 months old before his helment

On top of the neurological and the undiagnosed global delays, Beckett was sent to see a neurologist for possible signs of seizures.  At 14 months I noticed sudden jerks and rolling of his eyes.  A CT scan and EEG test returned results of o seizures or abnormal electrical impulses coming from the brain.  A ray of good news, finally!

Needless to say, these tests and screenings were just the beginning of the many specialists my boy would come to know during his first months by my side.  Meantime, our frustration was building as we tried to find answers for his conditions.   We wanted desperately for someone to tell us definitely what was strong.   In the continuous search for finding the best possible care, we focused on getting him help through Occupational Therapy at Texas Children's Hospital, and eventually through our Harris county ECI (Early Childhood Intervention) program. The emotional and physical strains were taking their toll on my husband and me.  We were trying hard not to think about the financial impact this was going to have on our family, but expenses were never far from the back of our minds.

In Beckett’s first year we became familiar with hypertonia, strabismus, phagiocephaly, CT scans, and the ever-lingering fear of not knowing how to save our beautiful boy from medical conditions best left unfamiliar. 

The Beginning of Beckett's Story

The Beginning

My husband and I decided to have a baby.  This was my second marriage and my husband had no children of his own.  Three children from the first marriage was an obstacle to overcome.  I had had a medically irreversible tubal ligation at age 28 after my third child. Upon weighing options we decided to take a chance with in vitro fertilization.  After initial testing and under ideal conditions we proceeded with the regimen of injections and the stressful hormonal ups and downs of IVF.  Then, one happy day, we were very delighted and excited to learn that of 3 implanted embryos, 2 of the rascals had made it.  We were doubling the fun and having TWINS!

During the pregnancy we had several frightening experiences of losing them.  I prayed that God would protect my babies and keep them healthy and bring them to full term.  On bed rest for 19 weeks, I held on with them until the 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 to prove it they exercised full lung capacity upon arrival.  We were deliriously happy about the new additions to the family.  Although, the first week was incredibly stressful, as I was rushed to the hospital 7 days later to discover that I was in liver failure.  Turns out I had an infected gall bladder with a large gall stone the size of a marble blocking the bile duct.  Admitted immediately, the ER doctor ordered tests to ensure that my pancreas was not also infected, otherwise I would be need emergency surgery to save my life from the toxicity of the infection  Thankfully the tests came back normal – relief  –  but “I would not be going anywhere!” I began to cry, not so much for me but for my husband who was left stranded at home with the newborns.  I wasn’t as nearly concerned for my own life as I should have been even though the doctor said I was very lucky to be alive.  Still, my focus was concern for my babies and my husband who needed help and my two extra hands. The worries would have to wait however because over the next 10 days, I underwent 3 major surgeries.  Had my gall bladder ruptured I would have had only 25% of recovery because of the toxic infection.  After four more days on the mend, I finally got to go home to my babies.  Looking back on those harrowing days, I now know that God kept me near for a larger purpose.  I just had no idea at the time what it was. 

The first year was an eye opener to say the least because I was unprepared for the challenging path that lay ahead.   Raising young children, a mother hopes and prays for a natural growth and progression of the infants.  Baby milestones mark progress.  The first few months of the baby’s lives I didn't think much about these natural milestones. Possibly, because of sleep deprivation and maintaining a full-time work schedule.  But a few months in, I noticed that my baby girl, Pyper, was right on target with milestones as she sat up, crawled eagerly, and took a keen interest in toys.  Whereas, my baby boy Beckett could not hold his head up or sit up on his own without being propped up by a pillow.  Mental notes I started taking of the odd behavior he began to exhibit; like screaming during baths and an inability to focus on toys or to hold them. His muscles became rigid, yet weak and limp. He would lie stiffly on a changing table during a diaper change.  Very soon, these disturbing patterns began to tug at a mother’s instincts.  Something was very wrong with him.  My suspicions were confirmed during a 6-month check-up when the pediatrician expressed concern. Thus began a journey any mother or father dreads embarking upon.