I've been out of commission for a few months with the arrival of a very important little lady, Addie. I know many of my friends and family members have wanted an update on our little ones, and now that I have some (I use this word loosely) time, I'm ready to get back into the world of blogging. Today's writing will be to give you guys a look into my three little loves' lives. Let's start with Addie...
We have a new little lady that has added immense joy to our lives. I was nervous about adding a third child. Not nervous about having three kids, but nervous about being the best mom that I could be to ALL of my kids. I didn't want to not have time for one of my kids, not be there when they needed me, not give them all the love that I can give to them individually. I realize now that even though we already had our hands full with the twins, Addie has been a final piece to our puzzle that we never thought we needed. It is funny how you find out something was missing without even knowing there was a missing link. Alex and Elle have been our loves and lives for 4 years, and they keep us on our toes at all times. And now, Addie has added a calm to our chaos (good chaos that is!). She really has completed us...cheesy as it may sound. She brings out the best in my Elle. Elle has become such a great big sister. She helps out all the time. She sings to Addie, puts her paci in her mouth when I need a hand, covers her with blankets (not her face...we had to have that talk already), makes faces at her, and most importantly makes her smile all the time! They really have a great bond at just 2 and 1/2 months. Alex, loves to pat his sissy and give her kisses - especially when she is sad. He is great about getting things like burp clothes or a diaper when it is just out of hands reach. They seems to have jumped into this new adventure with ease and love!
Addie has been sleeping between 7 to 9 hours every night. The only problem is that time is usually up around 3:30-4 so it seems as if she is not sleeping through the night. I think I need to mess with her final eating time at night. Make that 7-9 hours end around 6 or 7 instead!! She lifts her head up (and has lifted it since day 5). She can sit in her bumbo, roll to her side (she's trying for all the way but just can't get it yet), and push to stand on my legs for a few seconds. She smiles every time she wakes up. She coos and has giggled once in her sleep. Her only issue so far is some constipation that has lasted long enough to warrant some prescription laxatives that we have been using daily for 3 weeks. She is just a great baby girl! Matt and I have had a chance to have just her at home twice now. The twins went to my mom's, and it was a wonderful night. I never got to experience the only child thing, and it is truly awesome...something I missed out on. So a night or two here and there, is a great taste of that life.
Elle is starting Pre-K this year. She is in Ms. Sherrie's class, and she loves it. She is starting to understand her letters. This has been a hard one for her. She tends to say she "can't do it" when something is tough. We are working on getting that negativity out of her head. She was so proud last week when she wrote a lowercase 'e' and recognized the letter 'm.' The light in her face and the joy in her words of "I can do it" was amazing. Now I just have to get her to understand the meaning of the word "BORING!" because doing our hair is not boring, homework is not boring, eating is not boring. Girl...really?!?!
Alex is always a long story, but today is just a quick update. He has had his first set of stitches (that weren't due to a planned surgery). We were out to eat when the kids saw the empty, cement dance floor (it was a early dinner before the crowds). Alex started to run (the way he fast walks) and Elle did too. Before I could catch him, Elle stumbled into him and his chin met the ground before his hands. 2 internal stitches and 8 external ones later, we have a great story to tell! He took it like a champ. Beyond the initial crying with the fall and a few frustrated grunts during the procedure, he has been his normal happy, wild self. I am sure that his high pain tolerance is helpful too!
He is back at the PPCD at Little. The same teachers are with him again, and I couldn't be happier. He seems to have stepped up this year, and raises his hand to answer questions or be a leader. He is just having a great time and making steady progress!
We have started taking an attention medicine called Tenex (Guanfacine) in March. Since the start of the medication, Alex has met and surpassed all his IEP goals, and he is doing so well cognitively. I feel like his mind is really starting to make some great connections. Small steps lead to big boosts in confidence and courage!
As for Matt and I, we are enjoying our "new" life. I'm staying at home with the kids. Even though Alex is at school in the morning and Elle is in Pre-K for most of the day, we are able to do so much more with them. I feel like this is the right place for us, right now. I had a moment before school started where I thought, "Did I make the right choice to leave teaching?" but I quickly realized that home is definitely the right place for me! My kids need me!
Tonight I start my new job coaching at TAV. I am helping with their positional clinics one night a week for this month (2 days next month), and will take over a team when club starts in January. To have a few hours to get out of the house one night a week, should be nice! I am also editing a blog for an OB/GYN in Dallas that takes up a few hours each week too. I really enjoy that, plus I've learned so much about female health! Finally, I am getting ready to embark on a new adventure. I am going to be applying (it's a process) for admission into the Doctoral program at Texas Wesleyan University for the Fall of 2013. I had a meeting with the advisor last week, and I couldn't be more happy of where my life is going to go in the next year. If I get in, I will be able to be an adjunct professor in the School of Education while working on my degree. This will still give me time to be at home, but to move into a new stage of my career as well. This new stage is 2 fold! The first fold is selfish. I've wanted to be a Professor of Education since my undergrad, and the timing finally fit. The second part comes in the form of a little boy I met four years ago. He has become a teacher of life to me, and I want to explore him so much more than I already have. Of course my son, Alex, is this little boy. I want to continue to conduct research on many facets of his life from education, mobility, speech, socializing, bonding, family connections, the twin factor, and so n. I have tried my hardest to explore every avenue that I know of with Alex, but I believe that with intensive research in the field of "Alex," I have the possibility to open doors to places that I never knew existed. I will be able to help Alex in such a different way by taking on the role of researcher versus mom (of course the "mom" hat will stay firmly in place as well). I can become an expert, more than the little bit that I am, on the life of a kid who is running at full pace but not getting anywhere. I'm hoping that with the help of professors, research, and a mom's persistence, I can continue to unravel the mystery of my son. I am excited to continue my research with a purpose to present it to the educational staff at Wesleyan and possibly publish it for the moms, families, teachers, and doctors that need some help in aiding their kids. So for the next few years, look to my site for interesting things I have found along the way to help my special needs son!
Wednesday, September 12, 2012
Wednesday, December 14, 2011
Three is a good number!
Tis the season for "Silent Nights" because in 7 months there won't be any more for a long time! Yep, that's right. Merry Christmas to the Hunt family, baby number 3 is on its way! I am 12 weeks today and due on June 28th! Boy/Girl...what do you think? At least we know there is only ONE this time around.
The kids are pretty happy. Elle kisses my growing bumb daily, and asks if the baby is crying in there when Alex sits on me. She likes to stick her gut out and tell everyone that she has a baby too. She thinks it's a girl; however, every girl including Noni, Nana, and Rae Lyn (who's having a boy) are all having girls. Daddy, G-Daddy, CB, and Alex are having boys. That whole concept flew right over her head! Alex is clueless to the whole thing, but at least he has recently learned to lightly poke and pat babies instead of grabbing their hair and sitting on them. Progress! On a Rae Lyn note, she is ready to pop. Hopefully, in a few weeks, I will get to be an aunt for the first time. Hello, baby Tripp!
There is always some Alex news to report so here is the latest Alex endeavours:
1. We are currently working with our ENT to see if Alex has nasal/sinus issues. He has had some problems with a fowl odor, very unfortunate, coming from his mouth even though we brush'em, brush'em, brush'em every day. He has always had sinus infections and seems to be stuffy all the time (little piggy noises get old). We put him on an antibiotic incase the smell was due to post-nasal drip, and it worked. However, once he finished his medicine, the smell came right back. Dr. Palmer said that is a pretty common sign that he has a foreign object in his sinus cavity. Alex does not have the motor ability to stick things up his nose (he has yet to stick a finger up there), but he does tend to choke or gag on food at times and throws it up (many times up his nose). There is a possibility some of that food has become compacted in his sinus cavities (here is the point mom wants to barf a little).
So the plan is to do two rounds of antibiotics to make sure that it is not just a severe sinus infection. Then a CT scan on January 4th to see what's there, and then who knows what. Surgery to removes stuff if there is a problem, or a possible long term treatment if it's just a chronic sinus infection. Fun!
2. We went to Our Children's House of Baylor this past week to have Alex evaulation for a feeding therapy program. The program is suppossed to be amazing for all types of kids with feeding issues. Alex has improved ten-fold with his feeding in the last 6 months. He eats by himself with utensils, and can eat most normal foods without being purred all the time. He still has trouble with thick breads and noodles, as well as, meat. He pockets them like a chipmunk. So they will help us with that issue. The other great benefit to this program is they will do a speech therapy that starts with the oral motor process of eating. They think that Alex's muscles in his cheeks and upper lip are almost non-existant right now. This is why he cannot clear the food from him cheeks, and why he has trouble forming letter formations with his mouth. The program will be two-times per week (ouch) for as long as he needs it (at least 7-8 weeks). The only office that is close to me is in Los Colinas (Hey Carly). At least they are open until 6:30 to accomodate this working mommy. I am excited about this therapy. Something new!
Alex still rides his horse every Saturday. He moved on up to a saddle and a bigger horse named Corky. He is chocolate and super sweet. Alex has so much fun there! We have also been seeing the chiropractor/kinesiologist once a month, and I have seen big strides in Alex's awareness.
As for Elle, we are going through the same evaulation process with Our Children's House too. Elle doesn't have any motor, oral, or speech issues that she faced as a baby. She does have a strong adversity to most foods. Her menu consists of only 3-4 types of food with a strong adversion to everything else. Meal time usually ends in crying, throwing, and hitting. Fun! They work with kids like Elle all the time, and I am excited to see what we can do for her. It's worth a try, and they can coincide her appointment with Alex. If I have to go there for him, might as well give them a shot with her.
She has her first dance recital tomorrow at All Saints. I can't wait to see what she does?!?! I will take pictures and post them. At least she will be cute if she doesn't dance. Then we have our Christmas program tomorrow night. Alex will get to do that with her, and they get to dress up in their Christmas formals:)
We are looking for to Christmas. It is our first year where they really get what's going on. I can't wait to not have to work and relax a bit. We are going to have a family of 5 soon, and I need all the rest I can get!
We hope everyone has a Merry Christams and a Happy New Year!
The kids are pretty happy. Elle kisses my growing bumb daily, and asks if the baby is crying in there when Alex sits on me. She likes to stick her gut out and tell everyone that she has a baby too. She thinks it's a girl; however, every girl including Noni, Nana, and Rae Lyn (who's having a boy) are all having girls. Daddy, G-Daddy, CB, and Alex are having boys. That whole concept flew right over her head! Alex is clueless to the whole thing, but at least he has recently learned to lightly poke and pat babies instead of grabbing their hair and sitting on them. Progress! On a Rae Lyn note, she is ready to pop. Hopefully, in a few weeks, I will get to be an aunt for the first time. Hello, baby Tripp!
There is always some Alex news to report so here is the latest Alex endeavours:
1. We are currently working with our ENT to see if Alex has nasal/sinus issues. He has had some problems with a fowl odor, very unfortunate, coming from his mouth even though we brush'em, brush'em, brush'em every day. He has always had sinus infections and seems to be stuffy all the time (little piggy noises get old). We put him on an antibiotic incase the smell was due to post-nasal drip, and it worked. However, once he finished his medicine, the smell came right back. Dr. Palmer said that is a pretty common sign that he has a foreign object in his sinus cavity. Alex does not have the motor ability to stick things up his nose (he has yet to stick a finger up there), but he does tend to choke or gag on food at times and throws it up (many times up his nose). There is a possibility some of that food has become compacted in his sinus cavities (here is the point mom wants to barf a little).
So the plan is to do two rounds of antibiotics to make sure that it is not just a severe sinus infection. Then a CT scan on January 4th to see what's there, and then who knows what. Surgery to removes stuff if there is a problem, or a possible long term treatment if it's just a chronic sinus infection. Fun!
2. We went to Our Children's House of Baylor this past week to have Alex evaulation for a feeding therapy program. The program is suppossed to be amazing for all types of kids with feeding issues. Alex has improved ten-fold with his feeding in the last 6 months. He eats by himself with utensils, and can eat most normal foods without being purred all the time. He still has trouble with thick breads and noodles, as well as, meat. He pockets them like a chipmunk. So they will help us with that issue. The other great benefit to this program is they will do a speech therapy that starts with the oral motor process of eating. They think that Alex's muscles in his cheeks and upper lip are almost non-existant right now. This is why he cannot clear the food from him cheeks, and why he has trouble forming letter formations with his mouth. The program will be two-times per week (ouch) for as long as he needs it (at least 7-8 weeks). The only office that is close to me is in Los Colinas (Hey Carly). At least they are open until 6:30 to accomodate this working mommy. I am excited about this therapy. Something new!
Alex still rides his horse every Saturday. He moved on up to a saddle and a bigger horse named Corky. He is chocolate and super sweet. Alex has so much fun there! We have also been seeing the chiropractor/kinesiologist once a month, and I have seen big strides in Alex's awareness.
As for Elle, we are going through the same evaulation process with Our Children's House too. Elle doesn't have any motor, oral, or speech issues that she faced as a baby. She does have a strong adversity to most foods. Her menu consists of only 3-4 types of food with a strong adversion to everything else. Meal time usually ends in crying, throwing, and hitting. Fun! They work with kids like Elle all the time, and I am excited to see what we can do for her. It's worth a try, and they can coincide her appointment with Alex. If I have to go there for him, might as well give them a shot with her.
She has her first dance recital tomorrow at All Saints. I can't wait to see what she does?!?! I will take pictures and post them. At least she will be cute if she doesn't dance. Then we have our Christmas program tomorrow night. Alex will get to do that with her, and they get to dress up in their Christmas formals:)
We are looking for to Christmas. It is our first year where they really get what's going on. I can't wait to not have to work and relax a bit. We are going to have a family of 5 soon, and I need all the rest I can get!
We hope everyone has a Merry Christams and a Happy New Year!
Tuesday, October 25, 2011
Holland...
This was given to me by my mom, and to her by a PTA mom at her school. I thought it was a perfect metaphor!
I wanted to share this with all of you, this is how parents of special needs children feel. I really love this story.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with
a disability - to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like
this......
When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of guide books and make
your wonderful plans. The Coliseum. The Michelangelo David. The
gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives. You
pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for
Italy! I'm supposed to be in Italy. All my life I've dreamed of
going to Italy."
But there's been a change in the flight plan. They've landed in
Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guide books. And you must learn a
whole new language. And you will meet a whole new group of people
you would never have met.
It's just a different place. It's slower-paced than Italy, less
flashy than Italy. But after you've been there for a while and you
catch your breath, you look around.... and you begin to notice that
Holland has windmills....and Holland has tulips. Holland even has
Rembrandts.
But everyone you know is busy coming and going from Italy... and
they're all bragging about what a wonderful time they had there. And
for the rest of your life, you will say "Yes, that's where I was
supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because
the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get
to Italy, you may never be free to enjoy the very special, the very
lovely things ... about Holland.
Just thought it was worth a read!
I wanted to share this with all of you, this is how parents of special needs children feel. I really love this story.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with
a disability - to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like
this......
When you're going to have a baby, it's like planning a fabulous
vacation trip - to Italy. You buy a bunch of guide books and make
your wonderful plans. The Coliseum. The Michelangelo David. The
gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives. You
pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for
Italy! I'm supposed to be in Italy. All my life I've dreamed of
going to Italy."
But there's been a change in the flight plan. They've landed in
Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guide books. And you must learn a
whole new language. And you will meet a whole new group of people
you would never have met.
It's just a different place. It's slower-paced than Italy, less
flashy than Italy. But after you've been there for a while and you
catch your breath, you look around.... and you begin to notice that
Holland has windmills....and Holland has tulips. Holland even has
Rembrandts.
But everyone you know is busy coming and going from Italy... and
they're all bragging about what a wonderful time they had there. And
for the rest of your life, you will say "Yes, that's where I was
supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because
the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get
to Italy, you may never be free to enjoy the very special, the very
lovely things ... about Holland.
Just thought it was worth a read!
Tuesday, September 20, 2011
The Late Bloomer (you got to read it all to figure out this title)
Today, I was talking to my students about our novel study, A Wrinkle in Time. We were discussing how a young, five-year-old in the story was considered a "moron" because of his lack of speech and appropriate development compared to other children when, in fact, the young man was a brilliant mind. Each time I talk about this story, I wish and I hope that Alex will be like the young boy in the story who shows all his nay-sayers that there is a possibility to defy all odds.Today we've made a small victory! During this class discussion, I was left a voicemail to call the genetics clinic for our test results. The voicemail left me shaken because, of course, they don't leave test results in a message. Seriously though, who would really be upset if they left a message saying "hey, your tests are negative/positive, give us a call!" Really, does it have to be all melodramatic?
The nurse says, "Give us a call Mrs. Hunt about the test results for Alex. We have some things we would like to discuss with you." Yikes, really that seems bad! I called back during my conference with a dread and worry in my mind. This was it. That final straw to state whether Alex really does have a condition that we can not turn back from or if we were still on the path of possibilities. After what seemed like an eternity of her telling me the tests that were ran and the possibilites of outcomes, she dropped the "bomb." (Thought I'd add some melodrama to this moment to honor the sweet lady who made my day).
Alex is clear of genetic birth defects. All tests came back negetive, and Matt and I are clear of the possibilites that another child in our family could possibly be affected by a defective gene that one of us may carry. Such a fear!
Threw that one in on you didn't I. We think about our precious Alex and his possibility of a genetic defect, but we were startled with the reality that if we had more children their possibility of having Fragile X or Angleman's would be more than 23%. It is a relief that Alex is clear of this possibility once and for all, but also a weight of our shoulders that we are not putting another child in jeopordy if we choose to add on to our clan.
So here is the lastes: Listen up!
I am sort of, pretty sure, almost positive that Alex has said "HI" 4 times in the past week. Yes, seriously! It is far and few between, so I don't want to count it as his offical word. However, I do want to put it in record that Alex has a different sound coming from his mouth and he is trying to vocalize more! Yet, I am positive he has said "hi!" He is pointing to pictures on command, doing activites at school with purpose, and he is doing all of these things with attention and interest. Alex has a very, hyper active personality. Calming him down and controlling his senses is important. They are doing this at school! They are amazing. I am so happy with where he is at. It is, by far, the best place for any special needs kid. He is so lucky to be in this setting to learn, grow, and be nutured.
He has had a problem with waking up, completely ready to go, energized beyond words at 3 AM. It is a problem, but was solved by dad the other day by putting a baby gate up in their room. He woke up at 2:30 and was up for about an hour. I was not going to go get him, but rather hopeful that he would put himself back to bed. He did, but it was with his sissy. Talk about a wonderful moment waking up to your kids sleeping huddled together in the same bed. I love moments like these!
Last thing for this blog: We have been beyond blessed to have found CLC for Alex and Elle. When the kids were one; their nanny was ready to move on to other things, and we were left with finding a place for the kids. She was wonderful for them for the first year, but we needed to move on. I was worried and frantic because school had already started and I was unsure of where my kids would be taken care of in the best possible setting. Little did I know that God was going to lead me to a little slice of heaven on Earth. If any of my CLC teachers read this, please share it with the entire faculty. We are forever in your debt. You are our angels, answers to our prayers, and more than any "teacher' could possibly be (and that's coming from a teacher). We are blessed beyond words to be part of your program. Let me give you a small example of their love. Elle's teacher, Mrs. Norma, was talking to me the other day. I mentioned something about Alex (She is not Alex's teacher). She told me that God has a plan. Just trust it. She told me that I had to trust in him, and it will work out! She then gave me this book to take home and read to the twins. I'm going to pull at your heart strings, but I feel that I could not put Alex and my hopes, thoughts, and prayers into better words. If you have time, please listen to this sweet little girl read this quite simple book:
http://www.teachertube.com/viewVideo.php?video_id=129939
Thank you for all the comments, emails, and phone calls. You are what make us believe and hope, and Alex and Elle are what make us strive forward. These twins are amazing!
The nurse says, "Give us a call Mrs. Hunt about the test results for Alex. We have some things we would like to discuss with you." Yikes, really that seems bad! I called back during my conference with a dread and worry in my mind. This was it. That final straw to state whether Alex really does have a condition that we can not turn back from or if we were still on the path of possibilities. After what seemed like an eternity of her telling me the tests that were ran and the possibilites of outcomes, she dropped the "bomb." (Thought I'd add some melodrama to this moment to honor the sweet lady who made my day).
Alex is clear of genetic birth defects. All tests came back negetive, and Matt and I are clear of the possibilites that another child in our family could possibly be affected by a defective gene that one of us may carry. Such a fear!
Threw that one in on you didn't I. We think about our precious Alex and his possibility of a genetic defect, but we were startled with the reality that if we had more children their possibility of having Fragile X or Angleman's would be more than 23%. It is a relief that Alex is clear of this possibility once and for all, but also a weight of our shoulders that we are not putting another child in jeopordy if we choose to add on to our clan.
So here is the lastes: Listen up!
I am sort of, pretty sure, almost positive that Alex has said "HI" 4 times in the past week. Yes, seriously! It is far and few between, so I don't want to count it as his offical word. However, I do want to put it in record that Alex has a different sound coming from his mouth and he is trying to vocalize more! Yet, I am positive he has said "hi!" He is pointing to pictures on command, doing activites at school with purpose, and he is doing all of these things with attention and interest. Alex has a very, hyper active personality. Calming him down and controlling his senses is important. They are doing this at school! They are amazing. I am so happy with where he is at. It is, by far, the best place for any special needs kid. He is so lucky to be in this setting to learn, grow, and be nutured.
He has had a problem with waking up, completely ready to go, energized beyond words at 3 AM. It is a problem, but was solved by dad the other day by putting a baby gate up in their room. He woke up at 2:30 and was up for about an hour. I was not going to go get him, but rather hopeful that he would put himself back to bed. He did, but it was with his sissy. Talk about a wonderful moment waking up to your kids sleeping huddled together in the same bed. I love moments like these!
Last thing for this blog: We have been beyond blessed to have found CLC for Alex and Elle. When the kids were one; their nanny was ready to move on to other things, and we were left with finding a place for the kids. She was wonderful for them for the first year, but we needed to move on. I was worried and frantic because school had already started and I was unsure of where my kids would be taken care of in the best possible setting. Little did I know that God was going to lead me to a little slice of heaven on Earth. If any of my CLC teachers read this, please share it with the entire faculty. We are forever in your debt. You are our angels, answers to our prayers, and more than any "teacher' could possibly be (and that's coming from a teacher). We are blessed beyond words to be part of your program. Let me give you a small example of their love. Elle's teacher, Mrs. Norma, was talking to me the other day. I mentioned something about Alex (She is not Alex's teacher). She told me that God has a plan. Just trust it. She told me that I had to trust in him, and it will work out! She then gave me this book to take home and read to the twins. I'm going to pull at your heart strings, but I feel that I could not put Alex and my hopes, thoughts, and prayers into better words. If you have time, please listen to this sweet little girl read this quite simple book:
http://www.teachertube.com/viewVideo.php?video_id=129939
Thank you for all the comments, emails, and phone calls. You are what make us believe and hope, and Alex and Elle are what make us strive forward. These twins are amazing!
Thursday, September 8, 2011
A mom's quest for answers....
I think we are all aware that life hands us obstacles, twists, and turns that change us, make us, break us, and mend us. Many of us have yet to understand the why or how, but in my mind I know that there is a greater purpose, mission, or reason for our struggles and experiences: good or bad!
What I have yet to understand, is how Alex's experiences are going to fulfill those "words of wisdom" in his life. What is a little boy who has struggled so much, worked so hard, and has yet to break the barriers of his body suppossed to learn by life's obstacles at the age of 3? I guess that is where the "time will tell" piece of wisdom is suppossed to come in. Maybe we will all look back on this and think: Wow, we really had a scare on our hands, or we will look back and think of all the what ifs, what could be, and back to the ultimate question: Why? I think either way, we are blessed beyond words to have this amazing kid who has touch so many people's lives and hearts. He warms your soul, he brightens your mood, he makes you want to cheer, pray, and smile! He is the whole package even though he doesn't seem to fit that average, normal term of complete!
Now there is no pitty party here for our family! We are just starting to come to terms with the fact that we could have a miracle on our hands and all could be "perfect" for Alex. Maybe all those preemie, twin, boy, diet, etc. things could really be the reason and we could see a change when he is 5 or 6 or whenever, but we understand that we might not solve our "Alex" mystery ever.
So here is where this philosophical babble comes from: We had a few appointments this week that were suggested by our Neurosurgeon. The ones I mentioned last blog. We started with the genetisist at Cook's and we found some interesting things out. Let me start by saying that Matt thought she was a "B." I think he just thought that because she took a picture of Alex for their records and she mentionted that Alex and mom looked so cute, but didn't mention dad who was in the picture as well. What can I say, we looked pretty darn adorable that day! But, she was a bit crass, a bit snippity, and a whole lot angry that she was home from her trip to Northern New Mexico.
Any who, she started out by telling us that she thinks his "problem" is genetic. She thinks that if he doesn't test positive for a few tests, than he would probably still fit in the category. I don't think I am comfortable with this though. If you don't test positive, why throw a label on it and call it a day? So here is what she thinks:
She tested for Angelman's again. If you are unfamiliar with this go back to my first blog in July 2010. She thinks he has the facial features of a kid with Angelman's syndrom. This is technically what Dr. Marks (our neurogologist, not neurosurgeon) told us the first time we saw him. He did a Mircroarray test (DNA test) on him a few years back. That's the one that we had to wait 6, excruciating weeks for, and it came back negative. However, the geneticist says that the Microarray test is not the best test for detecting Angelman's. So we did another one that could give us a better understanding of his genes. Here is a link to the Angelman's website, which I think has a whole lot of non-mportant information for a person who wants learn basics about the syndrom. Either way you can look at the kids and tell me if you see a similarity between the kids's facial features and Alex's features: http://www.angelman.org/
Here is a better site for information: http://ghr.nlm.nih.gov/condition/angelman-syndrome
What I would see with this disease that fits Alex are these symptoms: developmental delay (which is like EVERY disorder ever), severe speech delay, balance issues, light hair, light eyes, and smiling (heaven forbid). He actually has a big head for his size (so that is one we can skip). He has a bit of spianl curve that the orthepedic is following, and his sleep is awful lately (but that could because of our sinuses that we were just prescribed Nasonex for). He doesn't fit the siezure or hand flapping thing, but he is pretty close with everything else. The other thing that Alex is being tested for is Fragile X. This one scares me a bit because of the little nuances that are right on the money. Of course this starts with every scary side-effect that is imaginable for most problems that someone could face, but it gets a bit more specific. So here is the site to navigate for this issue (if you got time).http://www.fraxa.org/default.aspx?gclid=CIWVhfj-jqsCFdwg2godcml1xg
Basically, Alex has the sensitivity to light, sounds, lacks attention, has a long face, and has large feet. His receptive language is great while his expressive language lacks. The kids on the site have a similar look to Alex, but I think that all these kids look fairly normal too.
So this leads me to the "who do you trust, what do you believe, where do you go from here" segment of my blog":
I have one doc telling me it is CP, one doc telling me it is Angleman's or Fragile X, one guy telling me to wait and see. So who do you believe? I guess, go with your gut. Become knowledgable, fight to see doctors, change doctors, and challenge doctors. Get second opinions, find other avenues, change your course of action, and know that in your heart of hearts that you are the most knowledge about your kid...more so than any doctor, professional, or therapist. There is no way that someone who has met and interacted with my kids for 30 minutes can honestly decipher his life's problem, his treatment, and his future.
Note for all you parents out there: Don't just go with the first person's opinion of your kid. Seek out different opinions and listen before "labeling" your kid.
So this leads us to another month of waiting. What will these tests bring? A label? A, lump your kid into the label even if he doesn't test positive for the label, or a big old question mark over the whole mystery? I am going to go with the latter. We don't know! Alex could defy all odds, Alex could just be truly delayed, or Alex could have life problems.
All I know is that he is my little boy, he is my twin's, twin, and he is Alex. He is what he is and that is pretty damn special! So get to know him, don't be afraid to play with him, don't treat him with kid-gloves, and above all don't discredit his affection for you. He wants to be held, loved, played with, and nurtured. He might not come up to you and initiate the play, but if you think about it...a lot of kids need some warming up. He just does things in his own way. Get to know that and you will be his friend!
I will update you on the results of his test when I get them, and the plan of action once I figure it out!
I didn't update on Elle last time, so I wanted to throw a bone her way. Elle is one sassy pants if I have ever seen one. She is potty trained (thank you God!). She rules the roost. She is dramatic. She is sassy, and she makes me laugh every day. She is super fixated on the fact that mommy and Elle are "happy." She wants us all to be "happy!" She loves school, she loves her friends. On that note, we are all her friends, but G-daddy is her "best friend." She thinks Tia is having a little boy named Joey (that would be Tripp, Elle, but she won't sway from Joey). She thinks we all having babies including herself and DADDY! She has learned to do that coy smile that gets you anything you want (see her picture in this post). News flash Elle, I mastered that smile...doesn't work on mommy. Try it on your dad! She can throw better than a girl, kick an ball with accuracy, is sturdy as an ox, and competitive. I have one live-wire on my hands, and I love it! Here is my kids, mostly Alex, in a nutshell. A really, really, big nutshell! Can someone help me crack the code?
What I have yet to understand, is how Alex's experiences are going to fulfill those "words of wisdom" in his life. What is a little boy who has struggled so much, worked so hard, and has yet to break the barriers of his body suppossed to learn by life's obstacles at the age of 3? I guess that is where the "time will tell" piece of wisdom is suppossed to come in. Maybe we will all look back on this and think: Wow, we really had a scare on our hands, or we will look back and think of all the what ifs, what could be, and back to the ultimate question: Why? I think either way, we are blessed beyond words to have this amazing kid who has touch so many people's lives and hearts. He warms your soul, he brightens your mood, he makes you want to cheer, pray, and smile! He is the whole package even though he doesn't seem to fit that average, normal term of complete!
Now there is no pitty party here for our family! We are just starting to come to terms with the fact that we could have a miracle on our hands and all could be "perfect" for Alex. Maybe all those preemie, twin, boy, diet, etc. things could really be the reason and we could see a change when he is 5 or 6 or whenever, but we understand that we might not solve our "Alex" mystery ever.
So here is where this philosophical babble comes from: We had a few appointments this week that were suggested by our Neurosurgeon. The ones I mentioned last blog. We started with the genetisist at Cook's and we found some interesting things out. Let me start by saying that Matt thought she was a "B." I think he just thought that because she took a picture of Alex for their records and she mentionted that Alex and mom looked so cute, but didn't mention dad who was in the picture as well. What can I say, we looked pretty darn adorable that day! But, she was a bit crass, a bit snippity, and a whole lot angry that she was home from her trip to Northern New Mexico.
Any who, she started out by telling us that she thinks his "problem" is genetic. She thinks that if he doesn't test positive for a few tests, than he would probably still fit in the category. I don't think I am comfortable with this though. If you don't test positive, why throw a label on it and call it a day? So here is what she thinks:
She tested for Angelman's again. If you are unfamiliar with this go back to my first blog in July 2010. She thinks he has the facial features of a kid with Angelman's syndrom. This is technically what Dr. Marks (our neurogologist, not neurosurgeon) told us the first time we saw him. He did a Mircroarray test (DNA test) on him a few years back. That's the one that we had to wait 6, excruciating weeks for, and it came back negative. However, the geneticist says that the Microarray test is not the best test for detecting Angelman's. So we did another one that could give us a better understanding of his genes. Here is a link to the Angelman's website, which I think has a whole lot of non-mportant information for a person who wants learn basics about the syndrom. Either way you can look at the kids and tell me if you see a similarity between the kids's facial features and Alex's features: http://www.angelman.org/
Here is a better site for information: http://ghr.nlm.nih.gov/condition/angelman-syndrome
What I would see with this disease that fits Alex are these symptoms: developmental delay (which is like EVERY disorder ever), severe speech delay, balance issues, light hair, light eyes, and smiling (heaven forbid). He actually has a big head for his size (so that is one we can skip). He has a bit of spianl curve that the orthepedic is following, and his sleep is awful lately (but that could because of our sinuses that we were just prescribed Nasonex for). He doesn't fit the siezure or hand flapping thing, but he is pretty close with everything else. The other thing that Alex is being tested for is Fragile X. This one scares me a bit because of the little nuances that are right on the money. Of course this starts with every scary side-effect that is imaginable for most problems that someone could face, but it gets a bit more specific. So here is the site to navigate for this issue (if you got time).http://www.fraxa.org/default.aspx?gclid=CIWVhfj-jqsCFdwg2godcml1xg
Basically, Alex has the sensitivity to light, sounds, lacks attention, has a long face, and has large feet. His receptive language is great while his expressive language lacks. The kids on the site have a similar look to Alex, but I think that all these kids look fairly normal too.
So this leads me to the "who do you trust, what do you believe, where do you go from here" segment of my blog":
I have one doc telling me it is CP, one doc telling me it is Angleman's or Fragile X, one guy telling me to wait and see. So who do you believe? I guess, go with your gut. Become knowledgable, fight to see doctors, change doctors, and challenge doctors. Get second opinions, find other avenues, change your course of action, and know that in your heart of hearts that you are the most knowledge about your kid...more so than any doctor, professional, or therapist. There is no way that someone who has met and interacted with my kids for 30 minutes can honestly decipher his life's problem, his treatment, and his future.
Note for all you parents out there: Don't just go with the first person's opinion of your kid. Seek out different opinions and listen before "labeling" your kid.
So this leads us to another month of waiting. What will these tests bring? A label? A, lump your kid into the label even if he doesn't test positive for the label, or a big old question mark over the whole mystery? I am going to go with the latter. We don't know! Alex could defy all odds, Alex could just be truly delayed, or Alex could have life problems.
All I know is that he is my little boy, he is my twin's, twin, and he is Alex. He is what he is and that is pretty damn special! So get to know him, don't be afraid to play with him, don't treat him with kid-gloves, and above all don't discredit his affection for you. He wants to be held, loved, played with, and nurtured. He might not come up to you and initiate the play, but if you think about it...a lot of kids need some warming up. He just does things in his own way. Get to know that and you will be his friend!
I will update you on the results of his test when I get them, and the plan of action once I figure it out!
I didn't update on Elle last time, so I wanted to throw a bone her way. Elle is one sassy pants if I have ever seen one. She is potty trained (thank you God!). She rules the roost. She is dramatic. She is sassy, and she makes me laugh every day. She is super fixated on the fact that mommy and Elle are "happy." She wants us all to be "happy!" She loves school, she loves her friends. On that note, we are all her friends, but G-daddy is her "best friend." She thinks Tia is having a little boy named Joey (that would be Tripp, Elle, but she won't sway from Joey). She thinks we all having babies including herself and DADDY! She has learned to do that coy smile that gets you anything you want (see her picture in this post). News flash Elle, I mastered that smile...doesn't work on mommy. Try it on your dad! She can throw better than a girl, kick an ball with accuracy, is sturdy as an ox, and competitive. I have one live-wire on my hands, and I love it! Here is my kids, mostly Alex, in a nutshell. A really, really, big nutshell! Can someone help me crack the code?
Wednesday, August 17, 2011
The Conundrum that is the Body
It's a wonder what in the world we have been doing with Alex all this time. We have recently found a new component to Alex's story. On August 5th, Alex had his routine check up with his GI doc, and they decided to do an allergy test (per my request). I just wanted to see if his diet had annything to do with...anything. Apparently, it does!
Alex is allergic to wheat, milk, sesame seeds, and egg whites. That explains the demanding shake of his head and avoidance to eggs in the morning. I just thought he didn't like it and needed to be coerced...oops! Luckily his allergies are on the low side of the allergy scale (whatever that means), and he has not had a horrific anaphylactic shock moment. However, here is what concerns me: I have fed Alex wheat products and milk products every day of his entire "food" life. Why have there been ZERO symptoms? Those questions were not answered by the allergists that we visited this past week. What I got from him was that Alex has not shown the basic symptoms of vomiting, hives, etc. while eating these foods. Since these were not apparent when he first ate the foods, we have probably created a tolerance to them. Here is where I am lost. I have had a few doctors tell me that if you don't see these inital symptoms then there is not an allergy. So, how do you get a test that says there is an allergy and even gives you a level of seriousness? What is it doing to his body if the "normal" symptoms are not showing up on a daily basis? Here is where I figured out the title to this little ditty; the conundrum of the body. It baffles me! The doc still has to look at Alex's allergy tests that were taken by Cook's GI to help us further. So we are back to the words that I hate...let's just wait and see!
In the meantime, we have put Alex on a wheat, milk, sesame seed, eggless diet. Boring and super expensive! I feel bad for Alex because he really wants those things he use to eat, but we are adapting and making many meals for him daily to help create something worth eating! I wish we didn't have to do this, but I want to make sure that we are not poising his system.
We have also added a few new specialists to our list. We currently have seven and are adding two more to the mix. I have many eyes on my little boy! On September 7th Alex is going to have a big day. We have three appointments that I am not sure we can realistically get to on time. I was shooting for one day off versus multiple days, and we will see how it goes.
So, first up on the agenda is his genetics appointment. We took a genetics test almost two years ago and everything came back normal. However, when meeting with our neurosurgeon (who did Alex's tethered spine), he suggested to do some new things. So, we are going to do some further research with the genetisist. He will analyze his testing, evaluate Alex, and give us some suggestions or advice. Apparently in the field of genetics, there is a lack of understanding in all that encompasses genetics. When you get a test back that is negative, there are still possibilies that you fall into the rhelm of a disease. So we are going to purpuse that avenue. We are also going to see our ENT as a follow up. I am excited to see this guy because Alex has had two ear infections since the placement of the long-term tubes. He growls when he sleeps and he tends to have some problems with really think snot (for lack of a better word). I am curious to see what this doctor has to say.
After the ENT we head over to the orthopedic surgeon. Alex's feet are, interesting! They lack arch support, they are turned out, they are fatty, and they turn out at the knee. The toes have a funny ball at the base of the foot and knuckle of the toes. I have notice his weird tootsies, and when we saw our neurosurgeon (catching on to the fact that there is one doc in our corner to solve our mysteries) he told us that it might be worthwhile to see the orthopedic guy.
So Alex's time has come again to explore the world of medicine, and it happens to be right when mommy's school year is starting and we don't have free days to take off for appointments. Who cares though! I want to see what others have to say so we can add on to Alex's adventure.
On a side note, Alex's PPCD school starts next week (August 22). There can only be a maximum of 10 students in the class with one teacher and two aids. This is our year! There are only 3 students, including Alex, in the class. I am so excited about the one on one attention he will receive!
I will update you on Elle and Matt at another time. This was just an Alex update! :)
Alex is allergic to wheat, milk, sesame seeds, and egg whites. That explains the demanding shake of his head and avoidance to eggs in the morning. I just thought he didn't like it and needed to be coerced...oops! Luckily his allergies are on the low side of the allergy scale (whatever that means), and he has not had a horrific anaphylactic shock moment. However, here is what concerns me: I have fed Alex wheat products and milk products every day of his entire "food" life. Why have there been ZERO symptoms? Those questions were not answered by the allergists that we visited this past week. What I got from him was that Alex has not shown the basic symptoms of vomiting, hives, etc. while eating these foods. Since these were not apparent when he first ate the foods, we have probably created a tolerance to them. Here is where I am lost. I have had a few doctors tell me that if you don't see these inital symptoms then there is not an allergy. So, how do you get a test that says there is an allergy and even gives you a level of seriousness? What is it doing to his body if the "normal" symptoms are not showing up on a daily basis? Here is where I figured out the title to this little ditty; the conundrum of the body. It baffles me! The doc still has to look at Alex's allergy tests that were taken by Cook's GI to help us further. So we are back to the words that I hate...let's just wait and see!
In the meantime, we have put Alex on a wheat, milk, sesame seed, eggless diet. Boring and super expensive! I feel bad for Alex because he really wants those things he use to eat, but we are adapting and making many meals for him daily to help create something worth eating! I wish we didn't have to do this, but I want to make sure that we are not poising his system.
We have also added a few new specialists to our list. We currently have seven and are adding two more to the mix. I have many eyes on my little boy! On September 7th Alex is going to have a big day. We have three appointments that I am not sure we can realistically get to on time. I was shooting for one day off versus multiple days, and we will see how it goes.
So, first up on the agenda is his genetics appointment. We took a genetics test almost two years ago and everything came back normal. However, when meeting with our neurosurgeon (who did Alex's tethered spine), he suggested to do some new things. So, we are going to do some further research with the genetisist. He will analyze his testing, evaluate Alex, and give us some suggestions or advice. Apparently in the field of genetics, there is a lack of understanding in all that encompasses genetics. When you get a test back that is negative, there are still possibilies that you fall into the rhelm of a disease. So we are going to purpuse that avenue. We are also going to see our ENT as a follow up. I am excited to see this guy because Alex has had two ear infections since the placement of the long-term tubes. He growls when he sleeps and he tends to have some problems with really think snot (for lack of a better word). I am curious to see what this doctor has to say.
After the ENT we head over to the orthopedic surgeon. Alex's feet are, interesting! They lack arch support, they are turned out, they are fatty, and they turn out at the knee. The toes have a funny ball at the base of the foot and knuckle of the toes. I have notice his weird tootsies, and when we saw our neurosurgeon (catching on to the fact that there is one doc in our corner to solve our mysteries) he told us that it might be worthwhile to see the orthopedic guy.
So Alex's time has come again to explore the world of medicine, and it happens to be right when mommy's school year is starting and we don't have free days to take off for appointments. Who cares though! I want to see what others have to say so we can add on to Alex's adventure.
On a side note, Alex's PPCD school starts next week (August 22). There can only be a maximum of 10 students in the class with one teacher and two aids. This is our year! There are only 3 students, including Alex, in the class. I am so excited about the one on one attention he will receive!
I will update you on Elle and Matt at another time. This was just an Alex update! :)
Tuesday, July 26, 2011
Memory Boxes
Here is a little something I have been working on for Alex and Elle. I have all these things that I want to keep for the twins that are piled up around the house, and I needed a special place to put the keepsake items that are going to be important to them in the future. Here is what I came up with... (Elle's box is not completely done on the inside...ran out of glue).
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