The Power of Determination - A Mother's Love

I have learned over time that the only way to move forward and accomplish your goals is through the sheer will of determination and the recognizable path that God has place before us.  Obstacles get in the way of people everyday. How they over come them is not by chance, but by the will to push through with the determination, I believe God instills in us the willingness to be guided along that path.

Problems arise and they are tests that keep us on our toes.  They are put there to see if we have the trust in Him to keep moving forward while not knowing the outcome.  Faith and trust go hand in hand.  Things will work out knowing that what will be, will be and is not under any control of our own. That is the belief that drives me to accomplish the objective that is set before me and the peace within me that keeps my mind clear of the static around me. 

My vision is clear and the path I walk is full of things I stumble on and tread through with only the strength from the good Lord above.  People have been placed in this path to either help or hinder, and it is through discernment to make decisions for what is good for the purpose that I have been given.

I will do whatever I can to help complete the goals and mission of our new foundation.  My purpose is to lead and follow through with the plans of our set mission.  I will not stop and will not give up.  The children are too important and the families that endure the hardship of raising a child with special needs will not stop either.  That will, that determination is what keeps me going.  I want to make a difference in the world.  I want to help change the world and not for money, fame or notoriety.  I want to make a difference for the better of people because it is what we are suppose to do.   I do this for my son, I do this for my family and the families before and after me.  I do not do this for me.  The power of determination in me will accomplish the goals I have set to help those who can't help themselves.  I will not stop until I am dead and have gone from this Earth, but hope to leave a legacy of the power of one can turn into many to help others in need.  That is why we are here, our purpose.

Busy Busy Bee!!

Over the last month I have been super busy.  I had the great honor of being able to attend a Patient Advocacy Summit in Huntington Beach, California with a fabulous foundation called Global Genes. They also had me as their guest at the 2014 Tribute To Champions of Hope Gala.  I learned so much and met so many people that have been an inspiration to me. It has renewed my energy and hope to continue to pursue my dream of raising awareness for SYNGAP. http://globalgenes.org/ 

 

 

 

Another parent and myself have become the co-founders of our new non-profit called Bridge The Gap - SYNGAP Education and Research Foundation.  Our mission is to serve, educate and fund research for families coping with the effects of SYNGAP mutations. We have an outstanding group of individuals on our board that are from all walks of life and are driven to help children and families effected by SYNGAP. We are in the beginning stages and are in the process of filing for our 501c status.  I am so excited that doors are opening for us and know in my heart of hearts that when we are 100% established that we will be able to make a difference in lives of those who are looking for answers.  I will always keep hope for my own son to be able to take advantage of any therapies or cures found, but if not it will all be worth it to be able to help those we can.   I look forward to every day to see what new and exciting things are going to happen. 

 

I have to admit it has been very difficult to change my attitude and I sometimes still have my off days just like everyone.  A friend of mine Carrie Ostra, who I have been working with through Global Genes said something to me that has resonated in me since.  Just a quick back story first.  Carrie lost her little girl to a rare genetic disorder called Gaucher's disease at the age of 3.  I met her for the first time in person in California.  I told her how much she inspired me and how she had lived so positively and continued to fight after she had lost her precious baby.  She looked at me and said these very simple words, "What is the alternative?"  I was floored.  She was right.  What is the alternative to living positive?  It's crazy how those four words changed my thinking and still wondering why it took me so long to see it.  Granted, I still have me days that are hard and I still have those little pity parties, but I remember those words of a mom who lost her baby who is driven by living her legacy by helping others.  How fulfilling!  God uses people in mysterious ways and He spoke loud and clear to me through her.  I hope that I can pass that kind of attitude on to others through what our foundation is trying to do.  I pray that the good Lord above blesses it and allows us to bless others though accomplishing our mission.  Please check out my friend Carrie's Little Miss Hannah's Foundation, named after her daughter.  Beckett also carries the gene mutation for Gaucher's Type I.  http://littlemisshannah.org/

 

 

Little Mr. B has been a busy, busy bee also.  He has a runner with the IRUN4 foundation who ran a marathon for him last weekend.  She did so good and we are so proud of her.  Kricia is an awesome friend and runner!  Of course you can see here that he is sporting the shirt she sent him. 

Beckett has been having trouble lately with his behavior and we believe that his medication will need to be changing again.  We went and saw the Pediatric Neurologist this last week. He will be doing research on SYNGAP children at Texas Children's and he is also a board member with our foundation.   He has ordered two MRI's and a new EEG for Beckett.  One type of MRI is new technology and can actually see the connections being made in the brain when "neurons talk".  I am curious to see what the results will be.  I am hoping and praying that Beckett's behavior begins to get better.  He has been scratching, biting and screaming consistently and especially when he doesn't get what he wants.  On the up side he has learned how to navigate and play simple games on the Ipad.  He seems to love it!!
 

HEAR MY CRY!!!

Over the last few months I have been trying to find my place.  Asking myself questions of ,"Where do I start?  Who will listen?  Who really cares?"  I am learning that more people do care, but there is so much going on who has time to do much about another person's problems.  My steps have been small, but as I look back on two years of shouting to the sky, I feel like I have been heard.  I am so excited to announce that the group www.GlobalGenes.org has published my son's story.  I have been a volunteer advocate leader for them and trying to help raise awareness of rare diseases and rare genetic conditions. This to help inform the public to to pass legislation that will benefit the Rare Disease community and encourage them to contact our United States Congress.  If you would like to read the published story about my son, please follow the link.
http://globalgenes.org/mom-spreads-awareness-about-rare-syngap-1-gene-disorder-after-sons-diagnosis/

Please contact your US Representatives and ask that the pass the following legislation.

If you would like more information on the pieces of legislation being discussed please follow the links below:

House Bill 460:   http://beta.congress.gov/bill/113th-congress/house-bill/460/

House Bill 1591:  http://www.facebook.com/l.php?u=http%3A%2F%2Fbeta.congress.gov%2Fbill%2F113th-congress%2Fhouse-bill%2F1591%3Fq%3D%257B%2522search%2522%253A%255B%2522H.R.%2B1591%2B%2522%255D%257D&h=dAQEaOjeQ

In the meantime, Beckett has finished his Kindergarten year and is looking forward to a relaxing summer.  We are hoping that he begins his ABA school in July and looking forward to seeing his progress.  Since last summer we have seen vast improvements in his verbal communication and his cognitive level has improved. He is saying his siblings names so that you can understand them and is having a better time expressing his needs verbally.  He can following two word commands and understanding directions more so than he ever has.  We believe that since Beckett's seizures have been controlled his learning has increased at a more rapid rate.  I am super excited to see him grow and develop when he begins Spectrum of Hope. 

https://www.facebook.com/photo.php?v=10202000707371403&l=1997653894636273445

 

Back to the Drawing Board...Again, But This Time... Expecting Change!!

Well....back to the drawing board.  Seems like Beckett didn't do so well on his Intuniv for ADHD.  I am thinking that he's not ADHD after all.  He became violent and his personality changed as we continued his dose over a weeks period.  He became a wild animal.  Biting, scratching, kicking, and the continuous screaming for hours.  For an entire week we had him on the Intuniv taking his dose in the evening and caused him to wake up during the night several times also.  I don't remember sleep deprivation that bad since the twins were infants. I had to take a 1/2 a day off work just to get some rest that week. We still have him on the Vayarin, which seems to be doing well.  We have also upped his dose of time released melatonin to 2.5 mg before bed. This has been a life saver for us because now he sleeps through the night.  He sleeps anywhere from  9 -10 hours at night.

Of course, once we started to get him regulated off the Intuniv, he ends up getting strep throat, AGAIN!  My poor boy has had strep throat about five times since he had his tonsils out a little over a year ago.  He actually told me for the very first time his tummy hurt, saying he had to "poo-poo", then throwing up all over the bathroom. That boy was sick.  I was shocked that he communicated to me he didn't feel well.  I was also very happy that he took the initiative to do so.  I am thinking that children like him also have a lowered immune system that is affected by their chromosome mutation.  He has been so sick as a child and he seems to be allergic to everything, especially antibiotics. They put Beckett on one of the strongest antibiotics they make this time.  I am hoping it works and knocks out the strep. Now that he has been on antibiotics for about 8 days, he has gone back to that sweet, loving boy I know when he is well.  The only side note to that, is he tends to be stuck in his terrible 3's.  He still continuously screams when he doesn't get what he wants, it's just easier to distract him when he is feeling better.

Beckett Playing at the Park

In the next few weeks we will be having a 20 hour EEG to determine if he is having seizures.  I am very anxious for this, because I can't help to think that this might be causing some of his screaming fits and high anxiety.  Sometimes he tends to zone out and just stare, then other times he just loses it and screams when he is told no, and once he gets started it is hard to bring him down from it. 
I pray for more answers.

In the mean time, I have been trying to gather information for Dr. Michaud and putting together a type of Parent Driven Study to bring families and doctors together to help with furthering Dr. Michaud's work.  I am still praying that there will be help for these kids and that things will begin to fall in place to create some type of organization to help families like mine and also help scientists fund their research on SYNGAP. 

If you are a family of a child or an adult diagnosed with SYNGAP, please do not hesitate to contact me.   

Summer is Gone...AND NEW MEDICATION IS HERE!!!

It's been crazy busy around my house these last few weeks.  I have once again started another school year.  This is my 19th year of teaching to be exact.  My husband and I have been teaching at the same school for 11 years, beginning our 12th.  I have 9 years and 173 days till I can officially retire from teaching.  But who's counting?  ;)
Since school has started I don't have preschoolers in my house at all.  Kind of hard to believe that my babies are growing all up.  Pyper has started Kindergarten and Beckett has started a half day PPCD and is being mainstreamed in Kindergarten the other half of the day.  I am so relieved to find before and afterschool care for the twins together.  Our FAC has accommodated us way above and beyond what they had to.  They have just loved on Beckett like he was their own.  Everyone in the Athletic Center knows him.  He's a charmer!  I know this is an answered prayer for us.  My stress level has come down a lot! 

Pyper and Beckett's 1st Day of Kindergarten

 

I am also pleased with the new medication he is on.  It is called Vayarin.  This is a medical food that is prescribed by the doctor.  It's primary use it to treat ADHD.  Beckett does not do well on stimulants. He freaks out when he comes down off them.  This particular "drug" is highly concentrated Omega 3.  It is formulated to pass through the blood brain barrier and is more able to affect the cells and provide the protein they lack.  This medication usually takes about 2 months to see the effects.  I saw a huge difference within 2 weeks. Mostly, I have seen an incredible difference in his speech.  I am flabbergasted at how he is now beginning to make more sounds, words and phrases than he ever has in his life.  I also have noticed a difference in his attention span.  He actually sits down and watches TV and videos on the computer for about 30 minutes at a time.  Before then that was unheard of.  He also seems more aware of his surroundings and tries to engage more with people.  Even his speech teacher at school has noticed a difference in his attention span and speech clarity.  This medicine has even chilled him out some.  He seems much less anxious about things.  This has been a medical miracle!!  He also sits and plays with toys and imitates more so than before.  It also could be that he is maturing a little bit too, but overall I am very pleased with the results of this medication he is taking. 

Poor Beckett had to have a tooth pulled this week.  When he fell on his front tooth in December swinging in a hammock, he again hit the same tooth and it abscessed.  So needless to say, having it pulled was an experience.  He is my little snaggle tooth now.  After some "happy juice" an some nitrous oxide, the dentist pulled his tooth out with out any struggle.  He did really good..and of course while they had him "loopy" they cleaned his teeth for the very first time. 
So far, it has been a great start to the year.  Now just to keep the routine!
 

Summer Blues

I guess I am going through the up & down emotions of having my oldest son in the United States Marine Corp Boot Camp right now.  He is in his 5th week and has started the 2nd Phase of training.  I worry about him getting hurt or getting sick.  I didn't think it would be this hard to let go as a mom.  His siblings are also missing him.  I can't remember the last time I actually watched the mailbox for letters.  Usually it's just the bills! LOL!  The twins seem to miss him too.  Pyper asks every now and then where he is and Beckett goes to his recliner every night to give him a kiss good night.  That's where Taylor usually was when he wasn't at work or at a friends house.  Anyway, I can't wait till September when he graduates and is officially a United States Marine!  Ooh Raa!!!

Since the beginning of summer we have had the twins in summer camp at our rec center. Beckett really seems to enjoy it.  He sure is tired though at the end of the day and has the occasional melt downs in the evening.  We ended up having to take him off his ADHD medication again, because of the irritability and anxiety it causes him.  It seems to cause his meltdowns to be worse as he comes down of the medication. 

I am happy to say that I have met another mom in my area with a son Beckett's age that has SYNGAP.  He is a little older than Beckett and looks a though he is hitting the same milestones at about the same time as Beckett did.  My new friend has told me about absence seizures that her son has.  I wasn't quite sure what they were until she explained them to me.  I have recently been paying closer attention to Beckett's behavior and have noticed that his inattention at times could be these types of seizures. I always thought his zoned out inattention could be chalked up to being his ADHD. She gave me the name of her neurologist and I have since made an appointment with him to check him for these type seizures.  So I am hoping to get clarification through a sleep study I am going to ask him to do. 

 

 

I have been feeling guilty because we don't' have him private therapy because of the cost and times available for me to have to go to work.  I understand much better how moms or dads have to give up their careers to take care of a special needs child.  It is incredibly frustrating!  I am glad that he gets to go to summer camp with his sister and be able to be around "normal" kids his age.  I believe it helps him understand the social expectations a bit better. I am also getting excited about him starting a full day PPCD and seeing where that will lead us this year.  Beckett is still on the waiting list for a day program for ABA, but we are still trying to workout getting to and from the program while I work.  I have faith the God will work out something if it His plan.  Hopefully the summer blues will subside soon.  I am trying to gear up for another year of teaching.  This will be year number 19 and counting!  Let's hope I can get to retirement..LOL! :) 

New FB Group for SYNGAP

Anyone who is a parent or caregiver of someone who has a variance in the SYNGAP gene is welcome.  Please join us to connect with other families who are dealing with similar situations.

https://www.facebook.com/groups/SYNGAP1CONNECT/

Thanks!




 

I AM ON A MISSION!!!

Please pass this on to any families that you may know that would benefit from this information. I have some great news!! I spoke with Dr. Michaud last night about my son's Syndrome SYNGAP1. He has ask me to help him find families of children who have been identified. He is working on defining the condition to continue his research. He is the doctor who created the test for SYNGAP1. This syndrome has children who have characteristics of developmental delays, severe language delay and many other symptoms that are mistaken for other things. Autism Spectrum Disorder symptoms and possible seizures can be seen in some of these children, ...but not all. Mostly this syndrome causes Intellectual Disability. He has ask me to invite ...families who have this diagnosis to contact him to help him define conditions caused by SYNGAP1. He has told me that once they have an official definition has been made, research can continue to the next step of starting more ...
studies in humans, since they have mouse model data. Please share this with parents you may know who have autism or unexplained symptoms to push their doctors to get genetic testing. This is huge, because most people settle for the autism diagnosis and stop there and don't push for testing. The more people out there who are identified, the more money for research, then research for possible treatments can be done. So..needless to say...I'm on a MISSION now;)

Please watch the video on SYNGAP1
http://www.youtube.com/watch?v=6NE7FgFBO_o

 Jacques L. Michaud, MD
Head, Division of Medical Genetics, CHU Sainte-Justine
Professor of Pediatrics and Biochemistry, Université de Montréal

CHU Sainte-Justine Research Center
3175 Côte Sainte-Catherine
Montréal (Québec)
Canada H3T 1C5
Phone: 514-345-4931, ext: 6900
Fax: 514-345-4766

jacques.michaud@recherche-ste-justine.qc.ca

 

Not Just Any Mother's Day

I am truly blessed.  I can't believe this is my 21st year to be a mom.  I have had many ups and downs, as many of us all do.  But through it all I am blessed beyond my wildest dreams. As I look back over the last 5 years I have learned the most about myself than at any other time in my life.  I actually thought the biggest test in my life was getting through an abusive 1st marriage. I was so wrong. God had other plans for me. I am also sure the learning curve will continue during this life of mine.
In the last month we have been trying to find the right ADHD medicines for Beckett.  We had him on 5 mg of Focaline for one week.  It turned Beckett into an aggressive, irritated and unsettled little boy, on top of totally eliminating his appetite.  We now have changed it to Adderall XR, but I haven't been able to get his prescription yet for it. I am hoping to begin it next week. 
This week has been an amazing week for me.  I received two emails from doctors who know more about SYNGAP1 than anyone I have found in the world.  I wrote an email to Dr. Gavin Rumbaugh from Scripts Labs in Florida 6 months ago.  I was so glad to hear from him.  He then gave me the name of Jacques L. Michaud, MD.  He is the doctor who developed to test for SYNGAP1.  He is now trying to make an accurate descriptive definition for SYNGAP1.  To my surprise, he emailed me back within about 10 minutes and ask me to have a phone conversation about Beckett.  I am so excited that I have been able to get the attention of a published scientist who is interested in my sons condition.  I am beginning to see doors open and hoping to be a part of something that will bring hope to others and my son.

Feeling Joy In Life Again!

It's been a while since I have posted an update.  I have done some soul searching that past few months and have realized that I had let my circumstance's in my life take control of my joy and happiness. I realize that through Christ, I really can't lose my joy, but I can be sad and unhappy when troubles  come up; which is ok. I just can't let it paralyze me.  I am going through the stages of grief learning to accept the life my child and family has been given.  I have come along way from the sadness in the last few months. God has shown me that He gave Chris and I this child because He trusts us to take care of him and raise him in the light of Christ and will use him for His glory. God has given me promises through the Bible that I stand on to keep me strong during the hard days.

Romans 8:27-29
²⁷ And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
²⁸ And we know that in all things God works for the good of those who love him, who^[a] have been called according to his purpose. ²⁹ For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters.

Ephesians 1:11
In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will,

I have to remind myself everyday that God is in control and that no matter what happens there will always be a purpose that God has a plan for.  I have decided to get involved with a couple of organizations that I can give of my time and also encourage others with a message of hope.  This helps me to give of myself and help others in times of trouble.  You just never know when God will open a door that He will allow us to walk through.  It really does make you feel better to know you are helping others.  It helps too minimize the magnitude of your own problems. 

I have also learned that when you let negative consume you, the good sometimes is over looked.  Beckett  has been a huge blessing to our family. His smile and laugh are contagious and when he laughs, you laugh with him.  I often look at him and wonder what I would have done without him.  He is becoming more receptive everyday and learning to do simple tasks.  He is beginning to imitate behaviors I never thought he would.  He watches me do chores around the house and follows me to do the same.  He helps load the washer & dryer and even tries to help put dishes away.  He wants to help sweep, rake the yard, pull the weeds..(well, sometimes my flowers), help his daddy push the lawnmower, bag grass and even help sand his play house for it to be re-painted. 

His speech is getting better also.  On Easter Sunday a week ago, Beckett said his big brothers name for the very first time..."Taylor"...not so much with the "T" sound, but it was pretty darn close.  We were so excited!! He sings to the radio in the car, and just loves Bruno Mars! 

I know that there are going to be tough days ahead and that I still have to take it day by day.  But the only way I can make it is through the Grace of God!  Otherwise, I don't know how I would get through it.  I really don't consider myself a "preachy" type person, but I am being real about my thoughts and feelings.  I do also want to note that I am so far from perfect and am human like anyone else.  I just want to share with the world what God has done for me and my family. 

Easter Sunday 2013

New Hope - New Friends

I have seen first hand how a person can go from one extreme to the other in about a week.  Life is strange sometimes. I feel bi-polar!  LOL!  I think I'm at a point where I don't think I'll ever get it, but just to go with the flow.  Sometimes the light at the end of the tunnel is so faint that you feel like your moving away from it and not to it.  It's amazing how life turns around just when you need it to.  You just hold on long enough for that to happen.  God knows exactly what to do and how to tell you it's going to be ok. 
In the past week I have had the opportunity to meet new people who are in the same boat as me.  I am so blessed that one found me though reading my blog.  I am so excited to be able to talk to someone who is going through some of the same feelings and emotions I am.  It has given me the determination to continue to have hope and push forward with whatever it is I am suppose to do....I'm still working on that one.  My new friend has introduced me to a new FB group of AWESOME people who have children that have Chromosome 6 Disorders.  https://www.facebook.com/#!/groups/chromosome6/
I really don't know what I would have done if I didn't have social media to be able to find people who are going through the similar things as I am. 

My Bean - Riding His Belle At Therapy

I also found a new hope in sharing my information on SYNGAP 1 with a person who works in a large pharmaceutical company.  She has told me to appeal to gene therapy companies to peak their interest in doing research on treating the functional gene with micro molecules.  I'm not really sure what that is, but it's worth a try.  So I now have a new goal to work on.  My energy is slowly coming back and my hope in a new day is keeping me going.  Only by the strength of the Lord can I do this!

Mystro Please!!

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Well, I know it has been a while since I have had a chance to update my blog.  A lot has been happening in my personal life that has interfered with our normal routine.  I am now in a custody dispute with my ex husband over my 2 teenage boys.  It has been a challenge to try and keep on track with Beckett and deal with unplanned events that are happening around us.  Never the less, I must press on and give God the fight over to Him.  I have learned through the last couple of months to truly know what it means to be thankful in my circumstances.  I am allowed to have justified anger, but to know that God will see me through this and that He has a plan, which I learned AGAIN, that it is not always my plans he has for me. ;)  Keeping a smile on my face has been hard, but for the most part I am at peace and I know the truth will be shown for those involved.

Over the past couple of months Beckett has started school again and is now adjusting to a new routine.  He doesn't get a nap this year in the afternoon.  We are feeling the effects of this every evening when we get him home.  He tends to scream and kick until I can get him fed dinner.  We have been giving him a bath right after he eats.  He has been going to bed around 7 every night and sleeps until 6 in the morning.  I am hoping that he adjusts to his new routine soon. 

Besides the new routine adjustment, we have just gotten his new device called the Dynovox Mystro.  This full operational computer is going to be his link to communicating with the world.  I was so happy when we found out that our insurance company paid the full $9,000 for it.  This was an answered prayer that God could only do!!  I am blown away by all the things that he can do with it.  Beckett is catching on slowly, but I am sure that over time he will be able to communicate is basic needs in a few months.  He carries it with him everywhere. It even has his favorite restaurants programed in it with his favorite foods.  His frustration level will be incredibly lowered using this to tell people his needs. 

Beckett telling me he has a "Book"

 

In the meantime, we are still waiting for the results of our 3rd round of genetic testing to return.  We also got an answered prayer that the insurance company paid in full for the $15,000 test.  YES! That is correct..$15,000!! We thought we would be responsible for at least part of it at some point and were amazed again how God works when we just don't think He is going to have it in His plan.  GOD IS SOOOOO GOOD!

Round 3

Got some more huge news last week about my baby boy. Texas Children's Genetic Center called and they have approved him to be a part of a study for rare genetic syndromes!!! He will be taking the Whole Exome Sequencing Test. The best part is..they said insurance will pay 100% of the genetic test!!!!This ones about $6000 buck-a-roos!! So off to Texas Children's to this week for Beckett, Chris and I to give blood. Please pray they find the answer we have been looking for. We are also waiting to here if he will qualify for the Human Genome Rare Diseases Study in Maryland..maybe I'll get to see the East Coast if we get to go.

                                 Riding on his pawpa's tractor at his ranch in Madisonville, Texas

Beckett is making more milestones everyday.  He is almost fully potty trained.  He still forgets if we don't remind him.  But he is in big boy pants all day and a pull up at night.  He stays dry throughout the night!! YEA!! I huge step we have been working on since Christmas.  The daycare has recently moved him into the 3 year old room.  He is trying to make more sounds and is imitating behaviors of his peers.  We are beginning to watch him play more functionally with toys..especially cars.  We are still trucking on.  We are in the process of getting a Dyno V communication device.  Hoping that insurance will pay for it 100%.  The therapist seems to think he will do well learning how to use it.  This will make communication so much easier for him.  God truly answers prayer.  When you begin to give up He reveals Himself when you least expect it.  GOD IS SO GOOD!

My Medical Mystery

I am dumbfounded, I don't really know what to think or do now.  We got back our second round of genetic testing and Beckett's result were normal, ALL NORMAL!!  I am glad and I am shocked at the same time that the doctors found absolutly nothing in his genetic testing.  His microray came out normal, he has no signs of the three creatine disorders, and has no genetic irregularities of organic compounds and now I am at a loss.  The genetic doctors did say that they only find about 80% of the causes for global delays in these tests.  I was sure that they would find something, but they didn't.  This only means that we are headed to the next stage of testing.  This time we are going to try and get a x-nome test done.  This will search for very slight irregularities in the chormosomal DNA of the X chromosome.  This could possibly mean that he has a very rare genetic disorder.  This is scary because this means that the information on the types of syndromes is very limited.  My oldest daughter even said "maybe Beckett will be named after his rare disorder, if it doesn't have a name".  I told her I have mixed feelings about that.  I was hoping that it would be something well known so that we would know what the future could hold for our little boy.  On the other hand I would make it my mission to help any other child that was suffering from the same thing. 
Beckett has just recently celebrated his 4th birthday in May.  I have noticed he is getting more mature and is becoming more verbal than he ever has.  He tried to sound out the word "cake" to ask for a piece of his brother's birthday cake, I was so extatic that he said it. Just yesterday out of the blue he said "baby".  I was watching my nephew who was 14 months old and I told him to be nice to the baby, and he just said it clear as a bell.  I am not sure exaclty what is happening to Beckett, but I see accelerated progress with him.  He is actually beginning to go to the bathroom himself without being asked.  He still needs help, but he asks or pushes his button to go.  I do have to say I know God is answering our prayers.  I am coming to a point where I am accepting what I am being faced with and finding a piece with it.  I do admit sometimes days are hard, but it is getting better.  I am also trying to acccept that Beckett could just be "our little medical mystery" and might not ever find an answer.  Sometimes I do realize that that's also how God answers a prayer...He sometimes doesn't answer with what you are asking Him to do.  I am being taught something or He is growing my faith. Even though at times it is very hard and I really don't like it, I know he has my best interest at heart.
Jeremiah 29:11
For I know the plans that I have for you,’ declares the LORD, ‘plans for welfare and not for calamity to give you a future and a hope.