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.
Spend $50, Get Free Shipping on Select at Target.com
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.
Subscribe to:
Posts (Atom)