Beckett was just diagnosed yesterday with atypical absent seizures (borderline epileptic). Will be officially diagnosed when he has 2 full blown seizures. Technically he has an abnormal EEG. The doctor has said even though he has not had any real seizures yet, he is at a high risk for having them. He has 2 types of epileptic activity going on in his brain. He has what they call epileptic disturbances which are a pre-episode of a full blown seizure, they just don't reach full capacity of a seizure. These disturbances are what causes an interruption in his learning and can cause confusion and meltdowns. We are treating those with a new liquid sulfur based drug that is used for migraines. I am hoping that the medication will help elevate some of the absent type seizures he is having and hoping that it will help him to be able to learn and improve his memory. It just seems there is a never ending medical string of diagnoses for my baby boy. I am hoping that one day he gets relief from the endless confusion he experiences.
Thursday, December 19, 2013
Wednesday, November 6, 2013
Ohhhhh....The Joys of A 20 Hours EEG...And we're only 9 hours in.....
Well today is the day for Beckett's 20 hour EEG. Stick me with a fork...cause I am DONE!! Poor baby came in all in a riff last night because not having him on his routine. That is a big NO, NO! I was already sweating when I hit the door of the hospital carrying with me 4 pillows, a rolling suitcase containing toys and clothes, an ice cooler with food to get us through, my purse and then Beckett in tow. You would have thought I was moving in. None the less, we finally got in. After the attendant brought us back, Beckett just wasn't having it! He ended up pooping in his pants.(seems he does that when he doesn't want to be somewhere) had to change his clothes then get him to take his time released melatonin WITHOUT ice cream. LOL!! Yea..they got all that on video...Well, after I struggled to get new clothes on him and cleaned up, the melatonin started to kick in. He finally fell asleep with me holding him in this little bitty chair they have in his room. I sang and I rocked, I sang and I rocked..repeat...LOL! My back was killing me in this little chair and I'm looking around in, asking myself..I'm really going to entertain this child for 20 hours in HERE!!! They MUST be crazy! On top of that..sitting in this chair for about an hour and a half, I had to go pee! REALLY BAD! I realized..they don't even have bathrooms in these rooms. HOW STUPID! At least they have a sink so I can at least run the water and make me need to go pee more! UGH!
On top of all that, the electrodes were finally on. BUT..and yes that was a big BUT! There was something wrong with the wires or the box. So now I had too try and keep him asleep so she could trouble shoot the wires so they could get a good read. I was actually surprised that he stayed asleep for all of it. Now only to get him into the bed without waking up. YEA RIGHT! You got it...Murphy's Law! When something can go wrong it will. Someone really needs to go shoot Murphy! Not even 2 seconds after I laid him down, he's up! Yep! And I still can't go pee. My eyeballs are floating! LOL! Yes, sometimes that is all you can do is laugh just to make it through. Time in is only 4 hours and he has only been hooked up for 2 of those. Finally around 1am he dosed off long enough so I could slip out and go relieve myself. Then I came back.......get in bed next to him thinking I can get some shut eye too. NOPE! Beckett gets up and decides to poke me in the eye after I dosed off. He thought that was great fun! The tech had to come back in to readjust the probes because he figured out they were on his head. Now it's a game. He is just laughing it up, loving the fact she is messing with his head. He is super sensory and I think the pressure of her pressing on his head to put the electrodes on gave him some sensory input. He was up now! I am thinking to myself, "He'll never go back to sleep and they are gonna send us home". I gave him another milligram of melatonin to see if that wouldn't get him back to la-la land. Finally, at 3 am he fell asleep. Of course at this point my back is killing me and I am so tired I have become delirious. So I am up now at 6:30am watching my boy sleep wondering what his little brain is doing. Hoping I can make it through the next 11 hours. We shall see! I'm going to finish my cup of coffee now:)
 |
| Sleeping Cutie Woke Up!...but we made it through 12 hours and said they got a good read..so we can go home now!! |
Tuesday, October 22, 2013
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.
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.
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 |
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.
Sunday, September 29, 2013
My Special Boy: Breaking Out of the Bad into the Good!!
My Special Boy: Breaking Out of the Bad into the Good!!: Well...you know I had to incorporate something in the title of one of my favorite shows on TV, Breaking Bad..LOL! Yes, the finale is tonig...
Breaking Out of the Bad into the Good!!
Well...you know I had to incorporate something in the title of one of my favorite shows on TV, Breaking Bad..LOL! Yes, the finale is tonight!! It is a very thought provoking show that has made me think about how people can take two different paths on how to deal with "Bad" things that happen in life. Of course, this series took it to the extremes and showed the desperation and obsession one man had to live his life like he wanted and also try and justify it by using the excuse of taking care of his family. Funny thing is, I think we have all thought about the "what if's?" and then just continued on with the life we have been dealt. I guess this is where our belief's and values come in. I whole heartedly believe that God puts us in situations either to teach us something or to prepare us for something we will have to deal with in the future. But He is where we get our strength.
This whole experience that my family and I are in with taking care of a special needs child has allowed us to meet people we otherwise would have never met, showed us that sometimes our plans aren't as great as what God has for us, and that we can live with the trails put in front of us and come out stronger that we ever thought. People say to me all the time, how do you do it? I think to myself and laugh that, "I just do!" You could too if it was put in front of you, you are forced too. Most of us think we couldn't because of the things we would so selfishly have to give up. But you just do it because you love your child. What else would I do? Lock him in a closet somewhere and throw him some food and water every now and again? He is my son and is a person that God created and has given him to us as a gift. We are charged with taking care of him.
Over the last 9 months since Beckett has been diagnosed with SYNGAP1 I have come to know many people that are going to be life long friends and am excited that we can be a support for each other. We together are working on a way to raise awareness and hoping to begin a foundation that will raise money for research and to help families like ours with medical financial needs. Of course, we are looking for a civil attorney that can donate their time to help us out with that..so if you happen know anyone..send them my way! ;)
Since my last update on Beckett, he has begun to say more words. This morning he called for his daddy to come get him and has said the phrase "Help Me!". We have him on a new medication called Intuniv that helps him with his impulsive behavior and acts as a mood stabilizer. We have had to adjust it some as at first it made him sleep 16 hours a day. He takes it one time a day. I think we now have it set to where he takes it at night before he goes to bed and helps him not to be so sleepy.
Over all, Beckett is still making slow progress, but it's progress. He still has his daily meltdowns afterschool, but we are working on those and my "art of distraction" is getting better. We still take everyday as just that, day by day.
And you know I couldn't just end my post with that. I have to share how proud I am of my oldest son for graduating from the United States Marine Corp. He has made me so proud too!
This whole experience that my family and I are in with taking care of a special needs child has allowed us to meet people we otherwise would have never met, showed us that sometimes our plans aren't as great as what God has for us, and that we can live with the trails put in front of us and come out stronger that we ever thought. People say to me all the time, how do you do it? I think to myself and laugh that, "I just do!" You could too if it was put in front of you, you are forced too. Most of us think we couldn't because of the things we would so selfishly have to give up. But you just do it because you love your child. What else would I do? Lock him in a closet somewhere and throw him some food and water every now and again? He is my son and is a person that God created and has given him to us as a gift. We are charged with taking care of him.
Over the last 9 months since Beckett has been diagnosed with SYNGAP1 I have come to know many people that are going to be life long friends and am excited that we can be a support for each other. We together are working on a way to raise awareness and hoping to begin a foundation that will raise money for research and to help families like ours with medical financial needs. Of course, we are looking for a civil attorney that can donate their time to help us out with that..so if you happen know anyone..send them my way! ;)
Since my last update on Beckett, he has begun to say more words. This morning he called for his daddy to come get him and has said the phrase "Help Me!". We have him on a new medication called Intuniv that helps him with his impulsive behavior and acts as a mood stabilizer. We have had to adjust it some as at first it made him sleep 16 hours a day. He takes it one time a day. I think we now have it set to where he takes it at night before he goes to bed and helps him not to be so sleepy.
Over all, Beckett is still making slow progress, but it's progress. He still has his daily meltdowns afterschool, but we are working on those and my "art of distraction" is getting better. We still take everyday as just that, day by day.
And you know I couldn't just end my post with that. I have to share how proud I am of my oldest son for graduating from the United States Marine Corp. He has made me so proud too!
Saturday, September 28, 2013
I do, because you just do...
..yes..life is not always greener on the other side. It's hard to remember that when you are feeling sorry for yourself and wishing it was different, how things could really be. People ask me all the time, "how do you do it?"..you just do because you have to..you could to if you had to...
Please watch...I have to remind myself everyday not to wish for something different..because it could be the kind of different that you would never think.
https://www.facebook.com/photo.php?v=10200907170114838&set=vb.351443748204703&type=2&theater
Please watch...I have to remind myself everyday not to wish for something different..because it could be the kind of different that you would never think.
https://www.facebook.com/photo.php?v=10200907170114838&set=vb.351443748204703&type=2&theater
Wednesday, September 25, 2013
Tomorrow is National Mesothelioma Awareness Day!!! Sharing for a Friend!! Please Read and Pass On To Others!
Sharing for a Friend!! Please Read and Pass On To Others!
Tomorrow is
National Mesothelioma Awareness Day!!! Please check out the link to our page that has
all the information on how to participate: http://www.mesothelioma.com/heather/awareness/
Video Story: http://www.mesothelioma.com/heather/
Saturday, August 31, 2013
My Special Boy: Summer is Gone....
My Special Boy: Summer is Gone....: It's been crazy busy around my house these last few weeks. I have once again started another school year. This is my 19 year of teach...
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!
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!
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
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!
Monday, July 29, 2013
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! :)
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.
Wednesday, June 19, 2013
It's a God Thing!
It's amazing how when you think your entire world will fall in on you, something happens to catch you right before you hit the ground. This last week has been up and down. As I had shared last week I was excited that Beckett was able to go to summer camp. Not even 24 hours after posting in my blog my excitement I get that phone call I was hoping I wouldn't get. They weren't sure they would be able to let him stay. He was having accidents in his pants and the little girl who was shadowing him wasn't really prepared to change dirty underwear. I cried all day and night just praying that God would allow something to work out so Chris and I could get a break. We had gone in to talk to the director and she said to us she really wanted this to work. She told us they were going give it until Friday to decide whether or not he would be able to come back the next week. I figured that Beckett was nervous and had high anxiety that was literally "scaring the poop" out of him. When we returned on Thursday the director had said she was able to switch the schedule around to allow one of her counselors who was a "mom" take care of him. I was so relieved that she did that for Beckett. So far, he has been back this week, still having a couple of accidents but we now have someone who isn't worried about cleaning up a mess. Come to find out Ms. Dee has eight children of her own. She said it doesn't bother her at all and she was glad to be able to help. I was so ecstatic when I picked him up he didn't have one accident today!! I hope the rest of the week at camp goes the way today did.
Besides the good news of Beckett not having an accident today. The best was yet to come. I got a call from my geneticist this afternoon. He shared with me that he had gotten an email from a researcher at Texas Children's Hospital asking him if he had any families with SYNGAP1. He said to me; "Monica, I had gotten your email and two days later I received an email out of the blue from a researcher here at Texas Children's wanting to know if I had any patients with SYNGAP1. I was scratching my head and thinking to myself, that's really odd and the two emails were totally unrelated?" He began to explain to me that they are about to begin a study on SYNGAP1 here in Houston at Texas Children's. They are looking for families wanting to participate that have children diagnosed with SYNGAP1. He ask me if I would have a problem with him giving me Beckett's information. Of course my response was ABSOLUTLEY NOT!! This is great news!!! I am so excited the this has gotten more attention in the scientific world!!! I am so excited that they want to use Beckett in their study!!! WHOOP! Before I ended my conversation with Dr. Scott he mentioned again how much of a coincidence it was to get two emails in less than two days totally unrelated about the same thing. I told him that that's not a coincidence...that's a God thing!! He giggled over the phone and said, "you are probably right, I do believe that God allows things to happen like this." I told him, "This was an answered prayer!" He told me, "Yep..I believe in those too!"
Besides the good news of Beckett not having an accident today. The best was yet to come. I got a call from my geneticist this afternoon. He shared with me that he had gotten an email from a researcher at Texas Children's Hospital asking him if he had any families with SYNGAP1. He said to me; "Monica, I had gotten your email and two days later I received an email out of the blue from a researcher here at Texas Children's wanting to know if I had any patients with SYNGAP1. I was scratching my head and thinking to myself, that's really odd and the two emails were totally unrelated?" He began to explain to me that they are about to begin a study on SYNGAP1 here in Houston at Texas Children's. They are looking for families wanting to participate that have children diagnosed with SYNGAP1. He ask me if I would have a problem with him giving me Beckett's information. Of course my response was ABSOLUTLEY NOT!! This is great news!!! I am so excited the this has gotten more attention in the scientific world!!! I am so excited that they want to use Beckett in their study!!! WHOOP! Before I ended my conversation with Dr. Scott he mentioned again how much of a coincidence it was to get two emails in less than two days totally unrelated about the same thing. I told him that that's not a coincidence...that's a God thing!! He giggled over the phone and said, "you are probably right, I do believe that God allows things to happen like this." I told him, "This was an answered prayer!" He told me, "Yep..I believe in those too!"
Tuesday, June 11, 2013
Time for Summer!
We started the summer this last weekend visiting Galveston Island State Park & Beach. You could say that this was Beckett's first "real" beach trip. The last time we had brought the twins, they were only 16 months old. I don't really count that one since they really don't remember it. He loved the ocean. He walked right into the water and into the waves. He would have floated away if his daddy wasn't right there with him. He was so excited! I don't think I have ever heard him laugh so hard every time a wave hit him. He laughed constantly for almost two hours strait. We had some of the most fun that day and more was on it's way!
This week Beckett has begun his first ever summer camp. I am excited and worried at the same time. This camp is not geared for special needs children. Mrs. Darlene the director of the camp has made it possible for my son to be able to participate with the kids his age. I am happy to know that she has taken an interest in making my son apart of her program. She has made accommodation's for him and to allow him to be with his twin sister for 6 weeks out of the summer. A young teenage student has been appointed a help the lead counselor with Beckett and to follow him in every activity planned, even in swimming. Of course, my biggest fear is him swimming...he can't! He has no concept of danger or fear. I also worry about him wandering off unnoticed. I know that they are aware of all his habits and won't let that happen.
So today is his second day. I haven't had a phone call yet to come get him, so I am assuming he is fitting in just fine. I am so thankful that the FAC director has seen a need to include the children in her program with special needs. I wish more childcare facilities did a better job of mainstreaming special needs kids with others. I believe it is not only good for the special needs child, but the child who has no disabilities to serve others who need it. I am sure his experience this summer will help him continue to progress and develop his language and other skills and also maybe expose others to differences they are not use to.
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Beckett's First "Real" Beach Trip 2013
This week Beckett has begun his first ever summer camp. I am excited and worried at the same time. This camp is not geared for special needs children. Mrs. Darlene the director of the camp has made it possible for my son to be able to participate with the kids his age. I am happy to know that she has taken an interest in making my son apart of her program. She has made accommodation's for him and to allow him to be with his twin sister for 6 weeks out of the summer. A young teenage student has been appointed a help the lead counselor with Beckett and to follow him in every activity planned, even in swimming. Of course, my biggest fear is him swimming...he can't! He has no concept of danger or fear. I also worry about him wandering off unnoticed. I know that they are aware of all his habits and won't let that happen.
So today is his second day. I haven't had a phone call yet to come get him, so I am assuming he is fitting in just fine. I am so thankful that the FAC director has seen a need to include the children in her program with special needs. I wish more childcare facilities did a better job of mainstreaming special needs kids with others. I believe it is not only good for the special needs child, but the child who has no disabilities to serve others who need it. I am sure his experience this summer will help him continue to progress and develop his language and other skills and also maybe expose others to differences they are not use to.
Sunday, June 2, 2013
My Special Boy: New FB Group for SYNGAP
My Special Boy: 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...https://www.facebook.com/groups/SYNGAP1CONNECT/
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!
https://www.facebook.com/groups/SYNGAP1CONNECT/
Thanks!
Friday, May 17, 2013
NEW FACEBOOK PAGE: Parents and Families of People with SYNGAP1
I have created a new Facebook Page to connect and educate families around the world with SYNGAP1.
This disorder is also known as MRD5, RASA1, RASA5, SYNGAP.
https://www.facebook.com/Syngap1?ref=hl
You are not alone!!!
Threshold Home Collection Exclusively at Target + Spend $50, Get Free Shipping on SelectThis disorder is also known as MRD5, RASA1, RASA5, SYNGAP.
https://www.facebook.com/Syngap1?ref=hl
You are not alone!!!
Thursday, May 16, 2013
Sunday, May 12, 2013
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.
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.
Monday, April 8, 2013
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.
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
Sunday, February 10, 2013
Tuesday, January 29, 2013
Next Step...I Mean Jump!
It's been a busy last few weeks and looks like the next few will be even busier. It's Rodeo Season for my husband and I. We volunteer at the Houston Livestock Show and Rodeo to give back to the community here in our city. It is a lot of work, but it is an escape from our everyday routine. The kids also really enjoy the dressing up and seeing all of the farm animals and fun things they have for them.
The video is sides ways..opppsy!
Even in the midst of all the everyday life bustle, we are still chugging along. We are excited to watch Beckett making new strides. We are learning to deal with his temper tantrums by both ignoring them and by placing him in our dimly lit room on the bed, while he cries out the fact he can't have what he wants. We have been pretty consistent with it and it seems that they have gone from 2 -3 hours down to about 15 - 30 minutes. His receptive communication seems to be getting better. His new words are "hot" and "cooooollllddd"...He tends to drag out the vowel sounds in his words. His vocabulary both verbal and signs have made huge gains since the beginning of school this last fall. I am also noticing that he is beginning to play a bit more independent with toys, especially trucks. We have watched him looking at the wheels roll back and forth when he plays with his cars. Since Christmas Beckett has loved his new trampoline. He has actually learned how to jump really high. It has really improved his coordination. I do have to admit, it took him a while to actually climb into it. We had to force him in and once he realized it was going to be ok, he loved it. I have already thrown my back out twice jumping in it with him. He laughs so hard he sometimes can't stand in it. His laughs are contagious. When I watch him I forget that he even has any problems and is just like any other
kid having fun.
Wednesday, January 23, 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.
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!
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.
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| My Bean - Riding His Belle At Therapy |
Friday, January 11, 2013
Rock Bottom & Climbing
As I look back during this last year from when I started this blog, I have to say that this last week has been the absolute worst in my life. I have been fighting back emotions in several areas of my life over the past 6 months. I will not lie about feeling so low that I really felt like not going on in this world. As I said in early posts that I had an outside influence that was affecting our family. This unfortunately happens to be my ex husband. He hates me, my husband and our success so much that he would do anything to hurt us.
My youngest son I allowed to go live him because I decided to go to mediation instead of going through a arduous court battle, AGAIN! He has taken us to court before and lied about many things and caused us to waste close to $25,000 that was reserved for my older children's college education. He has successfully turned my 15 year old son against us. I believe my son being the youngest, has felt like I have forgotten about him while trying to raise my twins. As most people realize, raising a special needs child does consume an enormous amount of time and money. Therefore resulting in changes of the dynamic of how things are done within the family.The frustration level that I feel is almost indescribable and unbearable. I am very sad that my 15 year old and my 20 year old are having to deal with anger and bitterness that is directed at both myself and their father. My 18 year old keeps things to himself and doesn't like talking about his feelings. Which also worries me. I never wanted it to be that way and have no idea how to fix it. I wish they would have had a happy childhood, but unfortunately they have had to pay the price for adults who can't act like adults. I have to admit, that I haven't been the best parent, but I have tried my best. I feel I have failed as a parent and in those regards has been hard to accept.
Trying to juggle not only my other children I have had to juggle my marriage. You would think that we would get time together because we work together at the same job. We don't have much alone time or time to focus on our relationship as a couple. When you don't spend time together building you then tend to fall apart. The stress of having a special needs child on a marriage was more than I expected. I believed I was going to lose everything this week and didn't want to live to see what it would be like losing everything again. I found myself laying face down on the floor crying in my room begging God to just take me away. I even feel guilty saying it, let alone thinking it. I heard a very small voice whisper in my ear, "I will carry you through". I stopped crying and I prayed for the strength to carry on. It gave me the peace that the future was going to be ok. I think I had hit "rock bottom" this week and only the Lord above is able to carry me out of the rocks. I still fight the sadness, but I try to remember the God is in control and He has a plan. But I honestly have to say...I really don't know what that is.
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