Emotions Everywhere

We have had a lot going on in the Weldon house these past few months.  There have been days I have been on cloud nine and there are the days I wish I could run away from it all and never come back.  Granted I never would just pick up and leave, but I would be lying if I told you I never felt that way.  I guess I am going through a bit of a mid-life, not like the ones you hear of on TV or in a bar, but one where you look back at your life and wonder exactly what kind of purpose you have here on this Earth.  Mine? Well, I'm still trying to figure it out.  I really am dealing with the fact I guess I'm gonna get old one day. I will go out kicking and screaming just fighting age. I think about all that I deal with on a daily basis and how am I going to be able to keep up with my preschool twins and of course three older children, two of which are adults.  Beckett is obviously a handful. His twin Pyper, well she is a little spit-fire all her own.  Don't get me wrong, I love my children but they sure are hard work.  I find myself trying to keep in shape, trying to eat right, making sure I'm going to stay healthy for my kids that I end up getting sick and tired literally. Then on top of all that feeling guilty about it.  I know its crazy thinking but I think every mom goes through that at some point.  I am still trying to grasp my purpose..even though one is clearly being a mom and wife.  Sometimes you just want to do more in life...but is there more than that?  I'm not really sure, but I truely think there is. See, I even feel guilty for saying that I guess because I have always been about my kids and family in general. 

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.

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.