Just a warning, but this post contains way too much information. I'm hoping some of you other moms of boys with Ds can help me. My little guy has a teenie-weenie turtle penis. It is small and constantly hidden by a fat pad in his groin. I'm concerned that when we eventually start potty training, it is going to be a big problem. Plus, it's kind of awkward that it doesn't resemble his brothers. They, at 4 and 3, are totally into all things gross and private and have taken note that Eon's is just not right.
I have repeatedly asked our beloved pediatrician about it and he basically blows me off every time. (I love the man, but he has a stubborn streak.) Does anyone have any experience with this? Which doctor should I address this with? He has an appointment at the Ds clinic in July and an appointment with his endocrinologist in the fall.
Sunday, May 30, 2010
Thursday, May 20, 2010
The well-meaning comment
At only 15 mos., Eon has yet to face ridicule or discrimination because of Down syndrome. I don't doubt those moments will come, but I try not to dwell on them. I do know other moms have had to put up with negativity and insensitive comments related to their little one's diagnosis, but we have escaped relatively unscathed.
Shawn thinks it's because people are afraid of me. That might be the case. I have a tendency to speak my mind. I get it from my mom, although she is 6' tall and slightly more intimidating.
What does often catch me off guard is when some well-meaning person decides to "encourage" me by saying some inane thing about Down syndrome or children with special needs. Recently, a gentleman who had been watching Eon really get into the worship service at church, approached me to tell me that even though Eon is not the "original design", he is still God's creation or something equally ridiculous.
Honestly, it kind of ticked me off. It was like he had just had the revelation that my son is worthy of life and felt the need to tell me. And, he said it like I should be delighted with this new tidbit of information. Really?!? Do people think I sit around depressed because I have this beautiful toddler who has an extra chromosome? How many times do I have to testify publicly that Down syndrome has blessed our lives, that Eon is exactly who God made him to be, that we couldn't be more in love with or prouder of our son?
Of all the experiences like this (and they always happen from church people...why is that?), my favorite was the lady who told us soon after he was born, "God told me to tell you that he does have an extra chromosome...an extra chromosome of love!" Still cracks us up and we say that all the time around here just for a giggle. :)
Goodness. If I get this worked up over well-meaning comments, how will I react when someone really is a jerk? Let's just chalk it up to pregnancy hormones, shall we? :)
Shawn thinks it's because people are afraid of me. That might be the case. I have a tendency to speak my mind. I get it from my mom, although she is 6' tall and slightly more intimidating.
What does often catch me off guard is when some well-meaning person decides to "encourage" me by saying some inane thing about Down syndrome or children with special needs. Recently, a gentleman who had been watching Eon really get into the worship service at church, approached me to tell me that even though Eon is not the "original design", he is still God's creation or something equally ridiculous.
Honestly, it kind of ticked me off. It was like he had just had the revelation that my son is worthy of life and felt the need to tell me. And, he said it like I should be delighted with this new tidbit of information. Really?!? Do people think I sit around depressed because I have this beautiful toddler who has an extra chromosome? How many times do I have to testify publicly that Down syndrome has blessed our lives, that Eon is exactly who God made him to be, that we couldn't be more in love with or prouder of our son?
Of all the experiences like this (and they always happen from church people...why is that?), my favorite was the lady who told us soon after he was born, "God told me to tell you that he does have an extra chromosome...an extra chromosome of love!" Still cracks us up and we say that all the time around here just for a giggle. :)
Goodness. If I get this worked up over well-meaning comments, how will I react when someone really is a jerk? Let's just chalk it up to pregnancy hormones, shall we? :)
Monday, May 10, 2010
MIA
I have been MIA in bloggy land for the last several weeks. It's probably hard to imagine since I have birthed six children, but I am not a fan of pregnancy. Those early weeks are difficult on everyone in the family. So, I have spent much of my time away hugging the toilet and fighting off the frequent migraines that accompany this blessed condition. I wish, at 13 weeks, I could assure you that I am well past that, but I can't. I keep thinking I should be feeling better and I am, but still not great.
I was truly spoiled in my pregnancy with Eon. I felt great the whole time. After going overdue with all of his siblings, I was amazed and blessed when he even gave me the gift of showing up a week early. He's such a great kid! :)
Speaking of Eon, one of my biggest fears for him is that he will be nonverbal. It is really important to me that he become an effective communicator. Probably because this family is full of gabbers and I want him to fit in, I'm worried that speech will never come for him. His oldest brother, Ben, has mild speech apraxia and two of his other siblings also needed EI for speech therapy, so it's kind of at the front of my brain. His speech therapist remains unconcerned and I wish I could adopt her attitude.
Because of that, whenever he learns a new sign, I am thrilled! But, right now, I am even more thrilled because, at 15 mos., he has added two spoken words to his "momma" and "dada" repertoire! He started signing "dog" a while ago and then started saying, "goggie" with it a few weeks ago. His newest addition is "book" which sounds more like "ook". He is very consistent with both of them. Earlier, he was out of my line of sight, but I heard him repeating "ook, ook" and I knew he must be looking at one. Sure enough, he had found his sister's book of sea creatures.
I know he will be behind in language development, but it gives me hope that one day, we will have meaningful conversations with this kid!
In other news, we should be receiving his SMOs early next week. The PT is confident that he will be walking behind a push toy shortly. I'm unconvinced, but we'll see. He is starting to cruise around furniture, but it's a little awkward and slow. He's also starting to let go after pulling up to stand and pause in midair before crashing to his diapered bottom. Makes me cringe, but he thinks it's great fun.
We have taught him to rely on a bedtime routine that is just ridiculous and it's beyond time to teach him to fall asleep in his crib, but I don't have the stomach for it. Isn't that sad? Any words of wisdom or encouragement on that front would be greatly appreciated.
Now, it's time to sign off here so I can spend some time catching up on the many blogs/lives I have been neglecting in my hiatus.
I was truly spoiled in my pregnancy with Eon. I felt great the whole time. After going overdue with all of his siblings, I was amazed and blessed when he even gave me the gift of showing up a week early. He's such a great kid! :)
Speaking of Eon, one of my biggest fears for him is that he will be nonverbal. It is really important to me that he become an effective communicator. Probably because this family is full of gabbers and I want him to fit in, I'm worried that speech will never come for him. His oldest brother, Ben, has mild speech apraxia and two of his other siblings also needed EI for speech therapy, so it's kind of at the front of my brain. His speech therapist remains unconcerned and I wish I could adopt her attitude.
Because of that, whenever he learns a new sign, I am thrilled! But, right now, I am even more thrilled because, at 15 mos., he has added two spoken words to his "momma" and "dada" repertoire! He started signing "dog" a while ago and then started saying, "goggie" with it a few weeks ago. His newest addition is "book" which sounds more like "ook". He is very consistent with both of them. Earlier, he was out of my line of sight, but I heard him repeating "ook, ook" and I knew he must be looking at one. Sure enough, he had found his sister's book of sea creatures.
I know he will be behind in language development, but it gives me hope that one day, we will have meaningful conversations with this kid!
In other news, we should be receiving his SMOs early next week. The PT is confident that he will be walking behind a push toy shortly. I'm unconvinced, but we'll see. He is starting to cruise around furniture, but it's a little awkward and slow. He's also starting to let go after pulling up to stand and pause in midair before crashing to his diapered bottom. Makes me cringe, but he thinks it's great fun.
We have taught him to rely on a bedtime routine that is just ridiculous and it's beyond time to teach him to fall asleep in his crib, but I don't have the stomach for it. Isn't that sad? Any words of wisdom or encouragement on that front would be greatly appreciated.
Now, it's time to sign off here so I can spend some time catching up on the many blogs/lives I have been neglecting in my hiatus.
Friday, April 9, 2010
SURPRISE!
Shortly after Eon was born, I discovered Reece's Rainbow and it became my passion to see those precious children with Down syndrome rescued from almost certain death. It was my hope that, one day, we would join the amazing families that are bringing them home, and adopt one of our own. We were moving to that end. I felt as if both the passion and the desire were from God. I was excited that we would finally do something "big" for Him.
So, imagine my surprise when I discovered I was pregnant. "This cannot be happening," I thought. We had the perfect, albeit large, package - three bio girls and three bio boys. The tie-breaker was supposed to be a chosen, adopted child. Honestly, six seems nice and compact to me. Seven just seems Duggar-kind of crazy! I sobbed the entire day after seeing the pink line. This was not the plan!
I wallowed in misery and disbelief for days. I'm not a big fan of pregnancy. For the previous seven months, I had not been pregnant or nursing for the first time in almost seven years. I discovered that I like myself without all those swirling hormones. So certain was I that we were finished with infancy, I discarded all things infant-related.
I remember telling a friend, "It is so hard for me when I'm all set to zig and God says, 'Zag'."
A few weeks ago at church our pastor was talking about following Jesus. He said that we need to learn to follow Jesus before we can truly serve Him....that sometimes we jump in and start serving God, and that it's possible to do that without actually following Jesus.
And then it hit me: I was irritated with God for interrupting my plans to serve Him.
I realized that I had a decision to make. I could either continue in my misery and believe the lie that this pregnancy was a mistake. OR I could choose to follow Jesus. I could believe the truth that this child was chosen by God, that his/her days were planned at the creation of the world, and that he/she is a blessing.
I chose the latter, and He's slowly changing my heart.
Someday, maybe we will adopt. But for now, we are rejoicing in new life, swallowing our pride, and looking Duggar-kind of crazy. :)
So, imagine my surprise when I discovered I was pregnant. "This cannot be happening," I thought. We had the perfect, albeit large, package - three bio girls and three bio boys. The tie-breaker was supposed to be a chosen, adopted child. Honestly, six seems nice and compact to me. Seven just seems Duggar-kind of crazy! I sobbed the entire day after seeing the pink line. This was not the plan!
I wallowed in misery and disbelief for days. I'm not a big fan of pregnancy. For the previous seven months, I had not been pregnant or nursing for the first time in almost seven years. I discovered that I like myself without all those swirling hormones. So certain was I that we were finished with infancy, I discarded all things infant-related.
I remember telling a friend, "It is so hard for me when I'm all set to zig and God says, 'Zag'."
A few weeks ago at church our pastor was talking about following Jesus. He said that we need to learn to follow Jesus before we can truly serve Him....that sometimes we jump in and start serving God, and that it's possible to do that without actually following Jesus.
And then it hit me: I was irritated with God for interrupting my plans to serve Him.
I realized that I had a decision to make. I could either continue in my misery and believe the lie that this pregnancy was a mistake. OR I could choose to follow Jesus. I could believe the truth that this child was chosen by God, that his/her days were planned at the creation of the world, and that he/she is a blessing.
I chose the latter, and He's slowly changing my heart.
Someday, maybe we will adopt. But for now, we are rejoicing in new life, swallowing our pride, and looking Duggar-kind of crazy. :)
Saturday, April 3, 2010
Friday, March 26, 2010
Doubt
doubt
(It starts as a whisper, a tiny niggling in the back of my brain.)
Recently, I posted a comment on a site stating that I am proud of my son's designer genes, that Down syndrome is part of his charm, and that his chromosomal enhancement is actually kind of cool. The responses were less than stellar. "Is this a joke?!" "A birth defect isn't cool!" "A genetic accident isn't something to be celebrated...it's a tragedy." "That's like saying leukemia or other diseases are cool."
Birth defect......Genetic accident........Tragedy......Disease
Doubt
(A little louder now, more insistent, it pushes forward toward the front of my conscious mind.)
Doubt
(A little louder now, more insistent, it pushes forward toward the front of my conscious mind.)
Eon just got over being sick. He was sicker than the rest of us......again. Sometimes, I think he's doing phenomenally well, but, sometimes, I notice things like him staring at his hands in endless fascination or seeming not to recognize his own name and I wonder. Is he fully there? How much is he really getting? How far can he go? What is his purpose?
Sicker.......Staring........Purpose
Doubt
(Starting to sink a little into the abyss of fear.)
Doubt
(Starting to sink a little into the abyss of fear.)
Can I do this? I feel inadequate. The thought of being the mom of a kid with special needs is overwhelming at times. Am I doing enough? I feel like he just hangs out with us most of the time. I rarely do structured therapy with him. We're not doing flashcards or an early reading program. We play with him and include him in our lives, but is that really all he needs? Am I strong enough to deal with all the therapies, appointments, and advocacy?
Inadequate.......Not doing......Overwhelming.......Enough
DOUBT
("Help me, Lord," I whisper.)
(and then...)
("Help me, Lord," I whisper.)
(and then...)
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139:13-16
So God created man in his own image, in the image of God he created him; Genesis 1:27
So God created man in his own image, in the image of God he created him; Genesis 1:27
You created......Wonderfully made.........Image of God
truth
(Yes, he is fearfully and wonderfully made. He was created in your image. You planned his days long before he was born.)
(Yes, he is fearfully and wonderfully made. He was created in your image. You planned his days long before he was born.)
For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
The Lord will fulfill His purpose for me; Psalm 138:8
Future.......Hope.......Purpose
Truth
The Lord will fulfill His purpose for me; Psalm 138:8
Future.......Hope.......Purpose
Truth
(Of course! You, oh God, have plans and a purpose for both of us. How do I fail to see it sometimes?)
I can do everything through Him who gives me strength. Philippians 4:13
But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9
But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9
Strength......Grace......Power
TRUTH
(You are my source. You are my strength and my shield. I can do this through you and you alone. I am not strong enough, but I don't have to be. As always, you are.)
(You are my source. You are my strength and my shield. I can do this through you and you alone. I am not strong enough, but I don't have to be. As always, you are.)
Tuesday, March 16, 2010
Blech!
I have been MIA in blog land for the last week as we were attacked by a tummy bug. Attacked as in every. single. one. of. us. It started exactly a week ago with the 2yo and has run through the entire family. The worst part is that it lasted for days for each person, with the exception of Ben. We joke that Ben has a compulsion for hand sanitizer but, as he is the only one who was down for a mere 24 hours, I think maybe he's onto something there. :)
Eon, though started vomiting Thursday night, seemed to get better by Sunday, was given formula and started vomiting again. The nurse at the ped's office had told me it was safe to reintroduce formula after 24hrs from the last episode, as long as he was keeping down other liquids and food...which he was. Yesterday, he slept most of the day, just waking up to whine and drink pedialyte. :( I finally gave him Tylenol and some stage 2 pears in the evening and he was much happier.
After sleeping fourteen hours last night, he was his old self this morning! I was so excited. He seemed hungry and, since it had been 36 hours since his last vomiting episode, I gave him formula. DOH! An hour and a half later, he started with projectile vomiting AGAIN! Ugh. So we're back to applesauce-thickened Pedialyte today. We were on our way to the Dollar Tree, so I'm glad we didn't make it out the door! Can you imagine me at the store with six kids, one of them projectile vomiting in the aisle? Ack!
My biggest concern is that he might be aspirating when he vomits. :( He's sounding very gurgly afterward and Shawn thinks his breathing looks a tad labored this afternoon. We're watching him closely.
I have not yet found a good way to catch projectile vomit from a 13 month-old, except with whatever clothing I happen to be wearing. :) Sunday, I knew it was coming so I held a bowl up to him. It missed the bowl completely and shot all over me! Hilarious! (I even found it funny at the time!) I've done more laundry in the last week than I have in the last six months. Shawn says the last time we had clean sheets every day.....we had to tip the maid.
Eon, though started vomiting Thursday night, seemed to get better by Sunday, was given formula and started vomiting again. The nurse at the ped's office had told me it was safe to reintroduce formula after 24hrs from the last episode, as long as he was keeping down other liquids and food...which he was. Yesterday, he slept most of the day, just waking up to whine and drink pedialyte. :( I finally gave him Tylenol and some stage 2 pears in the evening and he was much happier.
After sleeping fourteen hours last night, he was his old self this morning! I was so excited. He seemed hungry and, since it had been 36 hours since his last vomiting episode, I gave him formula. DOH! An hour and a half later, he started with projectile vomiting AGAIN! Ugh. So we're back to applesauce-thickened Pedialyte today. We were on our way to the Dollar Tree, so I'm glad we didn't make it out the door! Can you imagine me at the store with six kids, one of them projectile vomiting in the aisle? Ack!
My biggest concern is that he might be aspirating when he vomits. :( He's sounding very gurgly afterward and Shawn thinks his breathing looks a tad labored this afternoon. We're watching him closely.
I have not yet found a good way to catch projectile vomit from a 13 month-old, except with whatever clothing I happen to be wearing. :) Sunday, I knew it was coming so I held a bowl up to him. It missed the bowl completely and shot all over me! Hilarious! (I even found it funny at the time!) I've done more laundry in the last week than I have in the last six months. Shawn says the last time we had clean sheets every day.....we had to tip the maid.
Subscribe to:
Posts (Atom)