Wednesday, January 30, 2008

Hey DS Moms, Milestones question

This is from a post that I put up on the iVillage DS forum that I frequent. I'm hoping to get some input from all you moms of designer gene kiddos that might pop in here too.
_______________________________________________

Yesterday I took Braska to our pediatrician for her 12-month visit (at 14 months...due to my avoiding a bad nursing situation..the new nurse is great!). Whenever we go for these well-child visits, we get a little packet in an envelope that says "6 months" or "12 months" etc. It has a few pages of Milestones: What Your Child Should Be Doing with lists of things that Braska is, of course, *not* doing. It also has a few safety tips and such, but it's largely the milestones.

This isn't the first time I've received one, obviously, but each time before I wasn't sure what to say about what I was thinking about it. I kept thinking that it seemed flippant and almost insensitive to hand a sheet of milestones of development to a parent of a kid labeled as developmentally delayed. So this time, knowing it would happen, I'd been pondering what to say so as not to sound defensive and grouchy, but still needing to convey that for some parents, especially those who are still brand new to this life we now know, it might be just another layer of "guess what, your kid's behind."

I'm very aware of where she stands, as most of us are, probably even more so than many parents of "typical" kids. We have therapists and specialists and EI coordinators all keeping us abreast of how they're doing, what their strengths are and where they need work. I'm not heartbroken by looking at a list of 12-month milestones when I know she's not even close...that's good, as not so long ago I would have been. It's just that it seems like they would have some way to note a chart so that they wouldn't give the same cookie-cutter packet to us when so much of it doesn't really apply.

So I mentioned it to the doctor, he listened well and receptively, and said he appreciated it. He's in a hard spot because he's pretty new in this area and is still having staff issues, so it's hard to institute new things without staff support in a single physician practice. I understand that aspect because I'm a medical practice management consultant, and I work closely with others in this medical group as clients. I simply said I'd like them to discuss ways that they might be a bit more thoughtful about it, and he agreed and used the word "insensitive" in reference to handing the basic packet over. We see the DS clinic at St.Louis Children's regularly, so that's where we get our "real" DS info...the pediatrician is the only doc we keep locally, in case we need something right away. He pretty much defers all our care beyond the basic to the specialist team we have anyway.

Here's my question for you guys.... am I looking at this differently than you would? I'm wondering if you've had similar situations, and if maybe my background in patient care, medical office management and such things are making me more cognizant of this particular thing. He has asked me to help by submitting some ideas of what they could include, or if they should even skip all the milestone stuff and just discuss what's going on with the individual child specifically. What does your pediatrician give you for regular well-child visits? What would you want to receive or NOT want to receive?

Thanks for the help! When ya need to know, go to the moms!

Friday, January 25, 2008

Frostbitey

Here's what my odometer said weekend before last about why my teeth were chattering.




Don't forget that this is also the night we had 25-35 mph winds.

Thursday, January 24, 2008

Tagged: Love and Hate

Shannon at Gabi's World tagged me for the Love/Hate meme. Braska got tagged too, but she got to it before I did.

I had been pondering what I'd include on my list, and I had some good things that were going to segue into other posts I've been meaning to do. But tonight I've been frustrated, tired, and not in the frame of mind that would lend itself to a quality post. (I try hard to avoid the rant-post. And you can see how sparse my posts have been...get the connection??) So I am going to once again postpone a couple of topics and go for more of the fluff post, although still sincere. Forgive me, you true substance bloggers.

~~I love that God loves us even when we disappoint him so deeply.
~~I love my daughter, my husband, and my dog. (In no particular order)
~~I love my car.
~~I love my blogger friends who have taught me so much....that's a whole bunch of you! Holla!
~~I love what Reece's Rainbow does, and I love that God has blessed me to be involved in helping in every way I can.
~~I love El Toro II and our great friends who make every trip there a VIP experience for us.
~~I love that our extended families love our daughter so very much.
~~I love Braska's smiles and giggles. They make even the most sad day brighter.
~~I love to cozy up in my big comfy bed when the flannel sheets are on in the winter.
~~I love snow, watching snow fall, seeing snow drifts, eating snow ice cream, and walking in snow.
~~I love when my husband and I actually get to go to bed at the same time at night. That's just the way it's supposed to be.
~~I love hanging out with true friends, and I miss it since we don't get to do much as a "gang" anymore.


~~I hate that children have to suffer and are mistreated, kidnapped, abused, and killed. We simply must protect our children, from conception forward.
~~I hate that my life now includes a WS, EAs, PAs, and especially OWs. If you know what those are, I'm so so so sorry.
~~I hate being betrayed, feeling insecure and unwanted. It's the worse thing(s) I've experienced.
~~I hate that Braska has strikes against her from the get-go in so many eyes of society.
~~I hate that so many people search for something real and true and life-changing yet reject the One who can provide it. I wish I could more eloquently portray what a difference God has made in my life in the last 2 years.
~~I hate that I can't seem to manage my time anymore when that used to be such a strength of mine.

That's plenty for now... I must get some sleep. Here's to a more pleasant tomorrow!!

And as for tagging.... if you have more than one girl in your flock of kiddos, I tag you. (How's that for random?!?) Leave me a note so I can come see the list!

Monday, January 21, 2008

Then and now: Muncher and Wish

Christina at Kwisteena's Kwaziness tagged me to do a little looking back exercise. I've chosen to make it a series, in order to cover a few angles. This first edition is mostly for us big kid members of the family. When my husband and I met online, his screen name was Muncher and mine was Wish. This is part of our story in pictures.

As mentioned in my recent re-post about looking back, it's not always a pleasant thing for me to do. That's unfortunate, as I love to look at old pics and remember how fun stuff was and what was happening at each stage. SO...I'm going to have a little fun, remembering JUST the good for a few minutes(I'll try)...even if it is a little bit personally embarrassing. (What wasI thinking??)

Here's one of the first pics of M and me, and that's my youngest sister, Julia. This would have been about Spring 98, I think. We'd been dating about 6 months maybe, age 24.


September 2000, engagement pictures. Age 26. Here's that story if you missed it.


July 2003. Church directory picture. One of my LEAST faves of both of us ever. Good that only 1000+ people have a copy for posterity. Yeah. Age 30.


February 2005. At our friend's home. I was sporting a new short do, and M was looking mischievous as usual.


August 2005. Friend's wedding. One of my faves, because it's the last one in that era of our lives. Kind of like BC vs AD, but no, the BC is not for "before children." Those smiles are honest, fun, and innocent. We'll neither one be that person ever again, but I hope we'll end up even better and smiling wider one day. More pressure makes a brighter diamond, right?


August 2006. Baby on board. This one is meaningful to me because it was right in the midst of the storm, yet before the next cold front came roaring through. We went to see Mission: Impossible III at the classic theater in town. We so very rarely are anywhere with only the other, this was a treat for sure. Age 32.


This is my fave. 11/21/06. Still in the closeness brought on by Braska's delivery and news of the early morning hours (DS) and just before the trauma of the heart defect diagnosis and the beginning of the NG tube. Much of me wishes I could go back and start here again, but only if I could keep the knowledge I have now. Guess it doesn't work that way...


February 2007. I like this picture because I see so much in our faces that belies what was going on in our lives. It was painful. But we've grown, so that's counts for something. Braska's surgery was 10 days away, too.




May 2007. Our first "family pictures." There's alot more story to this particular day, but that's not for now. Braska was the star of this photo shoot. Age 33.


It's pretty sad that we don't really have another good pic of the two of us since May...but oh well. I'll add it to my to-do list.

Working late

It's 12:30 am. Way past my bedtime. I have so many things I want to post...for discussion, for posterity, or for a laugh, but I want to sleep. I wanted to sleep a few hours ago, but no can do.

Braska went to bed at 9 pm. That's on the early side for her, but she was tired and I had work to do, so it's a deal. M left just before then to head out for Sunday Night Gaming, so the house has been nice and quiet. I've been sitting here by the fire in one spot for 3 1/2 hours, reading, editing, typing, listening, all parts of my job. Some parts can be done in the daytime when Braska is playing, but much of it requires more quiet than her waking hours allow lately. So it's late-nights for now, especially with as much out-of-town time as we've had recently.

The debate now is do I stay up to finish a few more things that need to get done--this being one of those things. They'll be so much easier uninterrupted, but what quality will there be with my eyelids sagging all the while. M won't be home for a couple hours probably, so there is a window of peace. I'm SO behind on Braska's blog...there are SO many pictures to share and stories to tell...I mean, for me to help HER tell, of course. But the vision therapist will be here at 9 am, and I've got to go back to the new client office first thing in the morning to switch some equipment, and we need to take M's car in to the shop tomorrow, and the laundry is literally (and I do not use that word lightly) knee deep in the bedroom.

I think I've just decided to take sagging eyelids to bed.

Wednesday, January 16, 2008

Simulpost: Baby Levi has gone home

This was posted moments ago.

WEDNESDAY, JANUARY 16, 2008 12:12 PM, CST
The following message is from Levi:
I got to go home today! No more tubes, no more machines, no more doctors, and no more pain! I got to see my papa too, and he sends his love to everybody. Most importantly, I got to see Jesus. I know it's hard for everyone down there, but let these words give you home and comfort:

"Let not your hearts be troubled. You believe in God. Believe also in me. In my father's house are many rooms, and I am going to prepare a place for you. If I go to prepare a place for you, I will come back, so that you may also be where I am. I am the way the truth and the life. No man comes to the Father except through me."

I love you all lots, and I will see you again.
Love,
Levi

Please continue to pray for this family as they mourn their sweet child. Thank you for all your prayers and kind words. It has meant a great deal to this family, I can assure you. I will pass on all comments to them, if you'd like to leave one.

Best of: One step back, two steps forward

With the writers' strike in Hollywood, we've had alot of reruns and "best of" shows lately on the TV. It made me think that while I'm trying to survive this crazy month of seemingly constant packing suitcases, driving, and doctor appointments that I should utilize this same pattern.

So I'll be choosing some old posts, from back in the early days when only a handful of readers popped in occasionally, to share and bring back to the spotlight for a moment.

This first one, from only my second post on this blog, has been chosen because it has come to be pertinent again this week. I had occasion a couple days ago to have to face a difficult situation that I hoped I'd left behind. I feel like I handled it well, considering the way it kind of jumped out of nowhere, but I also found that in the quiet, I still had quite a bit of insecurity and pain lingering in the deeper caverns of my psyche. This post was good for me to find with fresh eyes... it's time, again, to think back and move forward. I hope it's encouraging to you in some way, as well.

Think back, Move forward, It's time.

Simulpost: Baby Levi's latest

In the next few minutes, Baby Levi will be taken off the ECMO machine, and his family is there to be with him and see how he responds. The concern now is his lungs, apparently. Here's the report from his dad this morning. Please be praying for this tiny one.

WEDNESDAY, JANUARY 16, 2008 08:42 AM, CST
Well, Levi had an uneventful evening. His pressures are up a little bit and his acid levels are better today than yesterday, which is definitely good news. The main problem is not the heart, but the lungs, and unfortunately, that may be an obstacle too high to climb. Until the last week, his lungs have performed well, and they have had no reason to suspect any lung disease or anything else. However, Dr. Gandhi said this morning that the lungs are much worse than he thought, and that there wasn't much that could be done for them at this point. He's not sure if the cause is something he was born with (most likely) or just a natural result of sitting around in the hospital waiting for his surgery (had to be done because of weight issues). The plan is still to go in at 9:30, to take him off the machine and see what Levi, and more importantly, God does. There may be an immediate indication that things aren't going to work, but it will be nip-and-tuck (not the TV show) for the rest of the week. Please pray for us and for Levi. All 5 of us (plus Levi) are here, and we are ready for whatever God gives us. It's going to be a long day, regardless, so pray for a miracle, and if we don't get one today, remember that his being here today is a miracle in itself. Thank you so much for your prayers.
Mike, Carrie, Arthur, Caleb, Clara, and Levi

Monday, January 14, 2008

Simulpost: Update for Baby Levi

Here's the update for Baby Levi today. Some encouraging news, but he'll need prayers ramped up for the next two days to Wednesday.

MONDAY, JANUARY 14, 2008, 10:53 A.M.
Ok. We got good news, which has the potential to be great news. Dr. Gandhi said that Levi's heart looked very good and that the pressures were pretty good for the 5 minutes he was clamped off on ECMO. If not for the kidney and another new issue, he would have been able to completely come off today. Because he was so full of electrolytes from not getting rid of waste, Dr. Gandhi didn't want him to start off life without ECMO behind the 8-ball, so he is going to hook up the actual dialysis filter to the ECMO machine and filter Levi fully. There was a new issue that has developed with his lungs, which may or may not be serious, which involves little air pockets (called bleps) which develop and run the risk of possibly bursting and collapsing his lung under the pressure from the excess air. Because Dr. Gandhi now knows this situation exists, he can plan accordingly when he goes to take Levi off the ECMO machine. This will happen on Wednesday. Sometime that morning, probably 8:30 again, they will take Levi off ECMO and see how he does. Since the kidney should have fully went through dialysis for 2 days at that point, and because the doctor is aware of the "new" lung problem, and most importantly, because Levi's heart is doing so well, Levi should come off the machine in good condition. There is one caveat to this: there is no going back on the machine; if Levi can't make it, then God has a new little buddy in heaven. The rest of the week will be difficult, especially the watching and waiting while monitors go nuts after coming off ECMO (as the nurses and doctors figure out what levels to set the little guy at). Thank you all so much for your prayers. God has worked a great miracle here. Dr. Gandhi didn't expect him to get this far because of the weight and kidney issues, but he feels pretty good about Levi's chances of coming off ECMO on Wednesday. There will still be bumps in the road as we wait for the kidney to return to function (1-4 weeks), and as we wait to see how the lungs perform (complete unknown). Keep praying, and as we keep seeing, God will do the rest!!
Mike, Carrie, Arthur, Caleb, Clara, and Levi

Sunday, January 13, 2008

Simulpost: Prayers for Baby Levi

Please take the time to read about Baby Levi. For his precious life's sake and his parents.

Baby Levi was born on November 29, 2007 at 2 lbs 5 oz and 15 inches. He has hypoplastic left ventricle and has been in the hospital since he was born. His father is a friend of mine from church camp back in junior high and high school, and I hadn't seen him in close to 18 years until last month. Levi is in the CICU at Children's where we go for all our specialists, so we've been checking on him often. He finally got up to 3 lbs 12 oz before he had his open-heart surgery this past Tuesday, January 8. He has had some severe challenges since and is still on the ECMO machine to help his heart and lungs continue to function. Here is the update his father posted this afternoon.

SUNDAY, JANUARY 13, 2008 01:49 PM, CST
Levi is having a great day today. His pressures are up and they have been staying up all day long. The only small issue is that he had a bath, which made him mad, and then he started to show obvious signs of being in pain (his respirations started to increase). They gave him some pain medication, but that didn't slow his respirations, so they are now going to have to put him on a drip for the pain. The only problem with the drip is that it may bring the pressures back down. Tomorrow morning is the big morning. Dr. Gandhi will take the bandage off of Levi's chest cavity and check for clots. Then he will put the echocardiogram probe directly on Levi's heart to see how it is functioning. He will also visually inspect the lungs to see how they are performing. After this, he will make the decision as to how to proceed. This boils down to 3 outcomes. First, Levi's heart and lungs are strong enough and functioning well enough to come off the machine tomorrow. Second, Levi's heart and lungs are getting stronger, but he needs to stay on the machine for a couple more days. Third, there is something terribly wrong, and we will have to say goodbye to Levi tomorrow. These are listed in the order of preference, not the order of probability, but right now, everyone needs to be aware that tomorrow could be Levi's last day. It has been incredibly hard keeping the balance between praying for the best, while knowing the worst could happen. Keep us in prayer tomorrow, as we try to handle what God allows to come our way. The kids are feeling better and will all be here just in case. Thank you all for your prayers and I will try to update once again tonight before I go home (Carrie is staying here with Levi tonight). I will update in the morning when the procedure starts and then will update as soon as possible after we hear from Dr. Gandhi. Keep praying and God will bless each of us.
Mike


I simply can't imagine the hurt this must cause Mike and Carrie to watch their precious son struggle like this. I was privileged to get to meet Levi in person, and he is so, so tiny, it doesn't seem possible for him to have come this far, but he has been a little fighter. We're praying, as we have been every day since he was born, and I hope you will too. Please leave a comment here to encourage them, and I'll pass them along to the family. It means so much to them to know so many are praying for their precious child.

If you want to visit his CaringBridge site, click here.

Sunday, January 6, 2008

Three steps behind

That's how I feel, three steps behind my brain. I keep thinking of all I need to do and I'm not getting much of it done.

In case you are one of...gosh...maybe the 2? people out there who don't read Braska's blog, here's a rundown of my last couple weeks.

12/22-To St. Louis for Christmas weekend. Home on 12/25.
12/26-Back to St. Louis to take Braska to GI for granulation. Home on 12/29.
1/2-Back to St. Louis to take Braska to GI for granulation...again. Home on 1/3.
That's 18 hours of driving right there.

That might have something to do with my being behind. Possible. And it looks like another trip is going to be in order in a few days unless something changes very quickly. Better get to the library to get some more books on CD.

Yesterday, I kicked my husband and daughter out of the house for several hours. That's the only way I can get real work done around here. They have to be gone. So they went and hung out with some friends and I got through 3 1/2 rooms. That even included sneaking away to meet the girls at Toro for a quick lunch. Even mopped the kitchen...and that NEVER happens anymore. So sad. I'm glad I made some headway though. It's a start.

Today, we had a bit of a late start, so we hit second service at church, then lunch with friends(Toro, of course), then home for a quick nap for the kiddo and the husband (and a peek at football for me) then to a movie with those same friends, then M went to Sunday Night Magic (yes, if you're counting, that's three nights a week now...but that's for another post), and I went to a friend's to do a bit of treasure hunting, you might say. Now we're home, it's 9 pm, Braska's asleep in her car seat, so I'm leaving her for the moment. She still needs to be fed once more, changed, etc. But I'm stealing a minute to sit and relax, check the email, and throw up a post.

I'm not usually a basic daily play-by-play kind of blogger, but for now, it will do. I didn't want you to think I've been slacking off or anything!

What did you do today?