A Little Something Extra

Tuesday, June 9, 2009

Anesthesia study

http://www.npr.org/templates/story/story.php?storyId=102306350

This article explains some recent research showing that children who have gone under general anesthesia are at greater risk for developing learning disabilities. The study showed no higher risk for children who have had one surgery. For two surgeries, the kids were 1.5 times more likely to develop a learning disability. But for three surgeries, the risk went up to 2.5 times. And if they had more than three surgeries? 50% chance of developing a learning disability.

I only briefly scanned the article the first time I read it. And I must confess to issuing an expletive. My mind was eased a bit after truly reading it again later and found that there was no mention that they took out children who were already known to have a proclivity toward learning disabilities. So maybe that means that Micah will not be any worse off having been under general anesthesia SIX TIMES before his first birthday. There's nothing here that shows that they took into consideration that spending that much time in the hospital alone could have contributed to the delays. And yes, Micah is developmentally delayed. He likely would have been even without the anesthesia. Will I ever know if he's more delayed due to the anesthesia? No. But I do have a pretty good idea that laying on his back in a hospital bed for 3.5 months of his first year certainly didn't help.

But if presented an option for getting his tonsils/adenoid removed or placing ear tubes, I can tell you this: I will consider this data before making a decision.

On a separate note... Micah had gone a whole month without puking until today when he issued a warm welcome to our new student nurse who is helping us this summer while Melissa is working at her internship. We certainly hope Whitney comes back. But after 11 hours with us today, I'm not so sure that I'd blame her for not wanting to come back. It was a long day. And Matthew is sick too, which is likely the cause of him being completely inconsolable for almost 2 hours tonight before crashing from exhaustion.

Oh, and I haven't yet shared about Nathan's busted teeth. Yes, the front of his face met with a falling chair (that he was on) and his front two top teeth jammed into his top lip (resulting in a one-inch gash on the inside). And those two teeth jammed up and back. Our kind dentist looked at his teeth that night (last week Tuesday) at his house. At the time, the teeth were not hitting his bottom teeth. That has changed. One tooth has gone back almost to where it should be. But the other tooth went farther back and is now hitting his bottom teeth when he bites. It appears at first glance as if he has lost a tooth. We went to see the dentist on Monday and he tells us he's never seen it move that much more, days after the accident (leave it to Nathan). The only fix is to put him in a retainer for a month but we can't do that until late summer after the teeth settle more. So my 3yr old will be starting pre-school in the fall with a retainer. Never thought I'd say that.


Quick new Nathanisms, then I'm off to bed to prepare for the long night of Matthew waking up often, only to not eat enough to satisfy before he wakes up uncomfortable again.

At the breakfast table on Saturday: "Daddy, your tummy is getting bigger."
Sunday conversation: "Daddy, why were you running?" "Because my tummy is getting bigger?" "See, I told you that!"

This morning, chaos was happening downstairs (Micah's pump was beeping loudly at me and Matthew was crying for food). Nathan then bounded down the stairs, causing me to say, "Insanity reigns!" which caused Nathan to ask, "Is it raining?"

25 comments:

Anonymous said...

What's with this? Are you looking for sympathy or what?? YOU chose to have children later in life. YOU basically took a craps shoot with the health of your children. Now it's a "poor me" attitude. Micah never chose any of this - and yes, my heart goes out to him and all his suffering. He never asked for all he's been through. But YOU CHOSE to take those risks and now you complain about all he's gone through?? You basically set him up for it. You knew the chances were high for problems with a later in life pregnancy - now how about quit complaining about the results. How do you suggest the issues Micah had be addressed without anesthesia??? YOU chose to gamble with his life. The consequences of that choice is yours.

Spleen said...

I don't know what the hell is wrong with the previous (and obviously cowardly) last commenter - but to attack you for sharing your experiences and emotions as you go through daily life with your beloved children's medical problems is ignorant, needlessly cruel, and ridiculous. Every person who chooses to have children takes a risk. At every age. So bad things happen, and one cannot share those experiences so others may find community and comfort and information? The commenter is a troll, and feeds on making others feel bad. You should feel free to delete it. Keep writing. Keep sharing your thoughts. And don't let the toxic weirdos get you down. If the jerk posts again, just delete it. You deserve better! :-)

johnbips said...

There are people of courage and there are cowards. If one can not stand by what they write or say they are a coward. Don't delete it so we can always have an example of a coward. They are usually anonymous in life.

Anonymous said...

Mark here (aka Husband) –
Thank you for expressing your thoughts regarding Micah and Jennie. Regarding the blog, we welcome all view points, even ones are solely intended to be hurtful and demeaning. In the spirit of wanting to bless those that curse us, if either Jennie or I can be of any service to you, please let me know through this blog.
As a man, a husband, and as someone who dearly loves my wife, I feel it necessary to defend her through a response . . .
Jennie and I met each other years after the age we both wished to be married. We married each other a year and a half after initiating a dating relationship (rather quick by today’s standards) and started “trying” one year after getting married. We then suffered through infertility for a few years before being blessed with Nathan, our firstborn. Through it all, Jennie was very aware of her biological “clock” and wanted to start the process of having children as soon as we could. She did not wait years to start a family due to selfish ambition or career pursuit. She desired to get married in her early twenties, but for whatever reason, we did not meet until she was in her early thirties.
After Nathan was born, it was Jennie’s DEEP desire to give Nathan a sibling so that he could have a playmate. To this end, we started “trying” again within months of Nathan’s birth. Due to various traumatic life circumstances in 2006, our journey regarding getting pregnant with Micah was tumultuous. It certainly took us longer than we would have wanted to get pregnant with him.
We all choose to take risks in life. I chose to take the risk to get in my car and drive to work this morning. I could have gotten in a serious accident and then written a blog about my journeys of recovery after being seriously harmed in an auto accident. And, you would be right to say to say, “Mark, you CHOSE to get a job to provide for your family! You CHOSE to drive a car to work (vs. walking or riding a bike)! It’s your fault that you got in that car accident despite the fact you were driving defensively, obeying all traffic laws including the posted speed limit. (Continued)

Anonymous said...

(Continued)
To a certain extent, I would have to agree with you. I had the gall to get a job and provide an honorable living for my family. I did CHOOSE to jump in my car and drive to work! I could have stayed home and quit my job. But is that the better alternative?

You are right, we chose to have Micah. We chose to bless this world with the next generation, believing we would be good parents. We took that risk. We chose not to practice eugenics and chose to include ourselves in the 10% parents that don’t brutally murder their child through abortion just because their child has a genetic disorder. And we get to live (and ENJOY!) the consequences of our decision.

Pursuing parenthood is a courageous act for everyone that chooses to be a parent, whether through adoption or through childbirth. All of us parents don’t know how our children are going to end up. Nathan or Matthew could both end up becoming the next Adolf Hitler for all I know (though I pray that is not the case!). If nothing is ventured, nothing is gained.

Regarding Micah and being his parent, it is a difficult journey for all involved - a wonderfully difficult journey. Like any parent good parent, Jennie and I love our son and want the best for him. We willingly sacrifice and give our lives away for his sake. Yet, watching someone you love so much struggle through life is a very hard journey. Jennie has made herself vulnerable (for everyone that knows Jen – that is not an easy thing for her to do!) and courageously posted her thoughts and shared moments from her journey on this blog. From my point of view, my wife is nothing less than a rock star who is sacrificing everything for the sake of her son. Though she is one of the toughest women I have ever met, she is human and hurts very deeply for our son. I am sorry to see that the expression of her humanity is despicable to you.

My God bless you and may His mercy and grace find you,

Mark

Jenn Saylor said...

I am sorry people are unkind in this world...it gives us more people to pray for.

Interesting article and will definitely make us think more about "elective" surgeries for our little guys.

Your boys are cute! And, you have a wonderful husband.

(By the way, I am Jake Saylor's wife.)

Bill said...

Jennie,
Wonder what this person would have said about Abraham and Sarah? The whole Middle East problem could have been avoided if they didn't have Issac - and at very old age too? LOL

My wife, Kimberly, and I have often said how much we enjoy your facebook postings precisely because they are honest. You encourage more people than you know. So don't let the people who live to tear down others, the people who are as useful to society as the National Enquirer - don't let these kinds of folks stop you.

This poster is the devil talking, condemning you for this when it's not you that caused Micah's illness. I view it more like the blind man in the Bible. They asked who's sin caused it. Jesus said "It's for God's glory." The devil tries to condemn and tear down what God is going to use. And the irony is that if you did the opposite, he'd condemn you for that too.

So when condemnation comes at you, repeat after me ... "It's for God's glory."

Choosing to not take a risk is a risk in itself. So keep on and live your life!

In my single days, I had a person saying things that weren't true about a group I was leading. I happened to be studying Nehemiah at the time, and that helped me tremendously. The short version is, no matter what, get back on track with what God's given you.

This is how God works. The people in that group were kind to Kimberly (who was going through a trial) while this other person was tearing the group down. Years later Kimberly became my wife. That's called reward (a wife) for persecution (slanderous remarks), and the reward will come your way too.

May God have grace with this person, who like all of us, doesn't deserve it.

Bill Phillips

ATLKrafts said...

I have been thinking of you guys a lot today and feel saddened that someone would write and make such surface judgments on you guys. I can't begin to describe how much we have learned from you as you have walked this road. Appreciate your response, Mark...

Andrea Marcks said...

Jennie and Mark -
I think you are both wonderful people and thank GOD you chose to have Micah (not that anything else was an option). He is NOT suffering and he continues to thrive. Shame on anonymous for making assumptions and not knowing what he/she is talking about about. I for one am so grateful that you have this blog since I used to pray for you all and loved reading the updates. You have taught me through this blog how very special downs kids are - Micah is gorgeous and so happy. I am so sorry he went through some hard times, but it taught me a lot. I never knew those complications were so serious. I was ignorant when it came to downs syndrome and now I find myself educating others about it - I will talk about Micah like a grandmother talks about her grandchildren. :-) I am so proud of him and I am so proud of you and Mark for being his parents. Shame on anonymous.....

Anonymous said...

Mark her e (again) –

I think what is overstated in anonymous’ comments, as well a possibly in my own retort, is this notion that Micah is leading an awful life or that things are really hard for him. The reality is that Micah is a very happy child who loves life. Having Micah as our son is one of life’s greatest joys and blessings.

I was thinking last night, if I was given a “do over” 2.5 years ago, before Micah was conceived, whether I would want to proceed? The reality is that I would miss him horribly if he was not a part of our lives and I feel his life is worth living.

What could be said about Micah’s life could in many ways be said about mine. I was born to a woman in her late 30’s and grew up and have spent a life overcoming the affects of Dyslexia. Is my life now a mistake!?! Indeed no. And neither is my son’s life. It is a life worth living. Period.

nightwillow said...

Anonymous -

What a hurtful statement made by a coward who won't come out and state who they are. So did I take a risk when I got pregnant at 24 and had a child with Down Syndrome? You are obviously ignorant and know nothing about Down Syndrome and the fact that most moms of kids with DS are younger moms. Also who are you to judge/tell someone at what age they can have children?

I know how rewarding having a child with Down Syndrome and how much they teach us about the world. It is a blessing to have my Seth and for us to have all of our children because they show us a world that we would have been blind to before. So keep on being great parents to Micah!

The Boltz Family said...

Jennie,

Your blog has always been a place for me to come and feel like I am not alone. Thank you for your honesty in your journey. Unfortunately, Anonymous sounds like the kind of person who believes that children like ours would be better off not here at all, and that is very, very sad. I cannot imagine a world without children like Jack and Micah, who will love without condition, and accept without judgement. It is a good lesson that they can teach us, and certainly one that Anonymous could learn. There will always be ignorance out there, and lives like ours allow us the privilege to sift through the garbage in our midst and take hold of the real gems with which we find ourselves blessed. Please know in your heart that what Micah faces is not your fault. Everyone takes a "craps shoot" the moment a child is conceived, and really, though cowardly Anonymous will never see it this way, you did hit a jackpot with Micah. Hugs. Heidi and Jack.
PS. Your hubby rocks.

Heidi said...

I truly think you are blessed - blessed to have an amazing husband and blessed to have three amazing little boys. You are also a very strong and courageous woman! I can't even imagine going through some of the struggles you have faced with Micah.

I do know that God has a plan for everyone and gives us His strength to handle anything that he allows to come our way. Micah is meant to be here as are Nathan and Matthew. They are all so precious to Him. He created them and loves them!

Thank you for your nice comments on my blog! The song I used for Joel's montage is called "Who You are to Me" by Big Daddy Weave. It is a great song and I think it would be just great if you used it for Micah's montage!

dbn210 said...

When I read the first comment by "anonymous" my first thought was that the person was angry/sad probably due to having an abortion and feeling guilty about it, therefore lashing out at you. That may or may not be true but behind those comments are is a sad person. God bless you and your family. It's people like Micah that make the world a better and much more interesting place.

Hector and Jennifer Varanini Sanchez said...

Mark and Jennie.....you are my two new heros. Mark's response was PERFECTION!

Peggy said...

Hi Mark and Jennie!
I believe that both of you are wonderful parents. It breaks my heart when you have to endure comments made by other readers that are so negative.
I tell my students that if they can't say something nice, don't say anything at all.
It's sad when there are not only bullies in our schools, but bullies on the internet. Adults that definitely SHOULD know how to behave.
Sorry we didn't get to see you when you went to the zoo. I enjoyed looking at the pictures. I think Matthew looks like Nathan.
I was also thinking that McMama might be interested in the information you posted on anesthesia.
Take care.
Hugs,
Peggy

MommySecrets said...

Jennie - you rock for being bold enough to share your thoughts and feelings with us.

Mark - you rock for standing up for your wife and defending her.

Comment Sharers - you rock for supporting Jennie!

Anonymous - may I gently exhort you (and myself!) not to be quick to judge others. you never know what's underneath the surface!

Anonymous said...

My previous post obviously wasn't taken totally as intended. I know Micah is happy - most DS kids/adults are and I don't doubt you are a decent parent. Its the getting on line, whining and playing victim that is dispicable. It's your "poor me" and "feel sorry for all I'm going thru" attitude that is a disgrace to all those of us who are raising children in situations MUCH more difficult than anything you've even thought about. Yes - life does involve risks and when we chose to take them, we don't know what will happen. That is part of the wonder of life. But to go on line and search out sympathy, looking for people to feel sorry for you is disgusting. And by the way - I'm not a coward - I just didn't know how to put my name at the beginning because I don't have a blog account. FYI - my name is Joscelyn and I am the very proud mother of 3 children - one of whom has had 2 liver transplants in less than 3 years. She has spent the majority of her life in the hospital. I took risk to have her - and I wouldn't give her up for anything but I also won't complain about how expensive or inconvenient things can get for us. That is called living with the choices we've made. I know what its like to have a sick child - but I've also got the inner strength and the support of family and friends that I don't have to broadcast online about all the bad things that have happened so others will feel sorry for me.

Peggy said...

Anonymous - Joscelyn,
The intent of this blog has NEVER been to whine or complain.
Jennie has chronicled and explained their lives with 3 "miracle babies". Explaining and complaining are two entirely different words.
I am sorry that your child has spent most of his/her life in the hospital. I can't being to imagine what this is like as I have never experienced that life situation. That being said, I would NEVER condemn you or write negative words to you about this.
That also being said, until you have been in the exact situation as Mark and Jennie and walked in their shoes, you have NO idea what they are going through.
I would ask that unless you can show compassion, please refrain from making anything other than positive comments on the blog.

Princess Abigail said...

People write blogs for a whole hoard of different reasons.

There are factual journalist blog (Huffington Post) which target news-hungry readers. Teenager blogs target fashion-crazed youngsters thirsty to be knowledgeable about the latest trends. There are fun blogs where prize-winning competitions are launched, political blogs where readers squabble about left and right …. There is no predefined, mandatory purpose to a blog.

Like Jennie, I started writing a blog about my family so that my family in Jordan, Luxembourg, London and Belgium could keep abreast of how we are doing here in France. Its also incredibly fun to keep a blog – I’m a photo freak, so my blog has kind of become a family photo album that my friends and loved-ones can share with me.

Because my daughter has a rare genetic disorder, my blogging activities soon drew me to blogs of parents who were living similar situations to myself. Although Down Syndrome and Jacobsen Syndrome are very different conditions, I was thrilled to stumble across Jennie’s blog, to see a family so like me own, enjoy their life, understand their experiences, learn with them, and carve a view of what the future might behold for us with our children. I am in France and Jennie is in the US – if it weren’t for the blogosphere, I would never have ‘met’ Jennie and her family. Yet each week I eagerly seek out her updates (hey Jennie, you’ve been lagging lately!), I giggle at Nathan’s latest mischievous jokes, learn something new about how disability is dealt with on the other side of the ocean with Micah’s therapies, and remember that it wasn’t so long ago that Abigail was keeping me up at night just like Matthew is now. I have learned SO much from Jennie’s posts! She really does research her posts thoroughly, and shares what she has learned with her growing audience of parents with disabled children. There is no complaining going on – its just our life.

I have never felt any sense of narcissism or martyrdom when Jennies shares her stories about life with Nathan, Micah and Matthew. I am astonished that someone else could interpret her writing this way. Jennie has always been an inspiration to me, and I love reading her blog. Blogging is probably mostly about creating communities of common interests, and if Anonymous doesn’t like this community, perhaps she should seek one more suited to her own needs.

Before I sign off, I wanted to say how inspirational Mark’s comments were to me. I couldn’t help but cry towards the end (now I’m sounding like a martyr!) because your support and love for your wife are so strong. I’ve had a little trouble lately with my faith in God … but your family, and your blog, have rekindled that little flame that was about to go out.

Thank you Jennie, Mark, Nathan, Micah and Matthew for your great blog!

Alison

Andrea said...

Dear Anonymous/Joscelyn-
You need to understand that Jennie never had any intentions of using the blog to "whine" or "poor me"....she used the blog to educate others and to offer support to other parents who were going through a similar journey. She also used the blog to keep all of her friends and family informed of Micah's progress. I have two daughters who do not have any disabilities - I read the blog to get updates and to support Jennie. I have never thought "poor Jennie"...I have learned how special she is and how amazing her friends and family are. I appreciate her blog because I am able to track Micah's progress and can pray for specifics rather than a general "Micah Prayer." I'm also able to pray for Jennie and Mark if they are having difficulties. You should be ashamed to think Jennie would ever intend to want anyone to feel sorry for her - keep your comments to yourself unless you KNOW Jennie and her family. You have no idea what kind of people they are like unless you know them. From this point on, please find someone else to lash out at so it can make you feel better. I will be praying for you - hoping you find strength to become a better person.

Andrea said...

Dear Anonymous/Joscelyn-
You need to understand that Jennie never had any intentions of using the blog to "whine" or "poor me"....she used the blog to educate others and to offer support to other parents who were going through a similar journey. She also used the blog to keep all of her friends and family informed of Micah's progress. I have two daughters who do not have any disabilities - I read the blog to get updates and to support Jennie. I have never thought "poor Jennie"...I have learned how special she is and how amazing her friends and family are. I appreciate her blog because I am able to track Micah's progress and can pray for specifics rather than a general "Micah Prayer." I'm also able to pray for Jennie and Mark if they are having difficulties. You should be ashamed to think Jennie would ever intend to want anyone to feel sorry for her - keep your comments to yourself unless you KNOW Jennie and her family. You have no idea what kind of people they are like unless you know them. From this point on, please find someone else to lash out at so it can make you feel better. I will be praying for you - hoping you find strength to become a better person.

Anonymous said...

Joscelyn: If not for the internet, I wouldn't have the joy of "knowing" Jennie. And yet, we didn't meet during a time of joy for either of us. Instead, through the internet, we found each other and were able to support each other during a heartbreaking time in both our lives. I know what a joy Micah is to Jennie (and Mark) because I know what a season of heartbreak proceeded his conception. To think that she would ever seek out pity or any kind of attention for that matter, just shows not only how little you know of Jennie or her history (AKA TESTIMONY!), but also how sad you yourself must be that you feel the need to belittle another human being - for ANY reason. Though you have been through unspeakable pain with your own child and I am truly sorry for that, I am quite certain that there are others in the world who have been through MUCH more difficult situations, as you say, than even YOU have thought about. And I'm quite certain that some of those are blogging about it. Every human being needs support. Every human being needs love and we all need acceptance. That does not make us pity-seekers or "needy" - it just proves that we are human - just as you did by mentioning your daughter. You obviously need more sympathy and support than you claim, or you wouldn't feel the need to bring up your own child's situation to belittle another mother. If any of us are "needy" as human beings, it is solely because God designed us to have that need, hoping that we would choose to come to HIM to fill that need. But God also created other human beings because he knew that we would need fellowship, that is, love, understanding and acceptance - and once in a while, someone else who might point us back in the direction of where he wanted us in the first place - at his throne, in His Word, in relationship with Him - just as Jennie has done for me. And the thing is, THE thing you really don't get, is that Jennie would have done the same for you if she had been given the chance, rather than attacked. And yet, I believe, even though it would be hard for her, that she'd do the same for you - even now. And you know why? Because Jennie loves God and God loves you. THAT is the kind of person Jennie is. How fortunate ALL three of her boys are to have her as an example of how you should honor God and how you should treat other people.

Jennie and Mark: Let no man put a "curse" on what is surely God's blessing!

Love,
Dove

Jenny said...

Joselyn obviously is stressed out about her own kids medical issues (which is understandable, BUT lashing out at Jennie who decides to cope with her feelings with raising Micah (who is so precious by the way)by blogging IS ABSOLUTELY HORRIFIC, not too mention very judgemental. Before you lash out with your opinion, I would consider knowing more about DS and especially check into a senstivity class. If you won't do either of those, then I would refrain from putting your 2 cents in. Jennie, you are a strong and inspirational wife and mother. Don't let anyone destroy that! You don't know me, but I love you for your honesty, dedication, and love. As for Mark and his response from that post, you are truly a real man, a real gem of a husband and father. God bless you both!

Anonymous said...

Dear Anonymous,
First of all I want to thank you for having the courage to identify yourself.
I think you need to understand where Mark & Jennie are coming from. Being part of the body of Christ allows us to share one anothers burdens and pray for each other. This blog has been a great way. There is nothing wrong with being honest. If you're struggling with something don't try to repress it, talk about it. I've read this blog and never felt like it had a "poor me" tone to it. I'm sorry that your kids have health issues too. I pray that you have a strong support group around you like Mark & Jennie do. I also pray that you would know the love of Christ and the plan he has for you and your children.

Peace,
Betsy