Monday, March 31, 2008
Today was spent dealing with insurance companies and finalizing the car situation. For the most part, it was easier than I expected. People have been very kind. The only exception was the towing yard that now has my dad's car. I asked if the car was totaled (knowing it would be but needing to actually ask the question to be sure). Good 'ole Walt took great delight in describing with graphic detail the condition of his car. The accident was violent enough to dislodge the battery and completely remove the passenger side door among other things. When he started describing the amount of blood and glass, I had to stop him to ask if he understood he was talking to his daughter. Oh yes, he said. What a guy.
I also started working on my father's obituary. Frankly, it is sad to see a life summed up by a few paragraphs. He was so much more than that.
Tomorrow we go to the mortuary to set up the memorial service. We had decided that we would cremate my dad in Arizona and then have a family member pick him up and bring him here. None of us felt like we would be able to actually see him, especially considering the condition of the car. Since then, my brother has got it into his head that he must go and see him himself. He leaves tomorrow. My mom is a wreck about him traveling the same route my dad just did. I don't know how he is going to do with Good 'ole Walt at the tow yard. I don't think I would be able to hold myself back if I saw Walt if you want to know the truth.
It really is so unfair. Incomprehensible, really. I tell myself that things couldn't possibly get any worse, but in reality, I know that it can. I am paranoid of things that wouldn't normally bother me. Hopefully that will subside some in the near future.
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Shawn continues to improve and was full of smiles today. Some of you have suggested they are heaven sent. I wonder if they are. It still would have been wonderful for my dad to get the chance to see them, too.
Sunday, March 30, 2008
My world keeps crumbling away.
He died a little before 1 am. At about that time, I was in the hospital with Shawn, pleading for God to help him, pleading for this to work for him. I was angry. I was screaming in my head that this was so unfair and that I couldn't take it.
Little did I know.
I am so sad that my dad only got to see Shawn sick. He is a different baby already. He isn't smiling yet, but the hint is there. It will come.
But my dad won't see that.
There is still a chance that Shawn will develop more scar tissue and block the holes that were created to help his shunt work. I pray that it doesn't happen and that I get to keep my little boy as he is. I couldn't bare to lose him again. I can't lose someone else.
My mom is struggling. My brothers are struggling. I feel like I am left holding the bag. I have had to do it all so far, and it looks like I will have to continue to make arrangements and settle his estate with little help from them. I understand my mom. They had been married since she was 17. He was all she knew. She is heart broken. I know she will find her way through this at some point, but now she is over come with grief. But my older brothers? I just can't understand why they get to grieve without contributing. Why does everything always seem to fall into my lap?
I haven't been able to really cry. A few tears have managed to escape, especially when I see my mom in tears, but the really big cry that has to happen is nowhere in sight. I suppose it will come when I get the chance to step back a little. I don't see that happening for some time to come.
I am so angry. Why is this happening to the people I love? Why would God do this, especially now. That saying that we only get what we can handle...is crap. I can't handle any of this. I don't want to handle any of this.
I have to anyway.
And it sucks.
Friday, March 28, 2008
Thought all was going our way...finally.
Until.
My dad died last night. Car accident. He was going to get my grandmother in Arizona to bring her here to see the babies. He was only 45 minutes away from her house. We found out this morning.
I keep getting swallowed over and over again. I just don't know what to do with myself.
Tuesday, March 25, 2008
Round 2 -- No Wait, Round 3 -- Wrong Again, Here Comes Round 4
We go back to the hospital for yet another surgery tomorrow and another over nighter. Shawn's shunt is only draining on the right side. The left side has even more fluid than it did when we went in last week.
No wonder my baby wasn't acting like himself. He isn't.
Here are our options:
1) Go tomorrow for and endoscopy (I think that is what he called it). Anyway, they will go in with a scope and make tiny cuts in the blockages between his two ventricles. The hope is that these little cuts will allow the left side to flow through to the right and then drain. There is an 80% chance that this approach will be effective for Shawn and "fix" the problem. There is a 10% chance of infection from the procedure, slightly higher than the infection rate from the shunt surgery itself.
2) A second shunt on his left side.
All of my energy is directed toward option 1. I am scared to death (yet again--well, I suppose I should say still) because we haven't always done well with the odds. Give us high odds for success, and we'll resist them for some reason.
Please direct all of your energy toward option one, too. I think we need all the help we can get.
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Interestingly enough, today was the wrong day for the appointment. Both Isaac and I thought the appointment was today. We thought today was the 26th, just like our discharge papers said. When we got to the office, they told us that our appointment was for tomorrow. I just wanted to cry. It took everything I had to not start bawling right on the spot.
They felt sorry for us and fit us in today anyway. We had to wait, of course, but I do feel like they tried hard to help us.
When we got in to the see the doctor, he asked us about Shawn. I told him that his soft spot started to bulge yesterday. It still was soft with no hint of firmness. I went on to say that he is better in some areas but I just didn't think he was right (right doesn't sound right, but I can't think of another now). I insisted on a CT scan to ease my nerves. He didn't want to but did agree.
He said he was off to a surgery. When he had the chance to look at the scan he would have an associate call us, presumably with the all clear.
I knew things were as I expected when the doctor called us back to his office himself.
Here is the thing that gets me the most. Had we gone to the appointment tomorrow, they would very likely not have done a scan and there is no telling when we would have had the surgery to correct the shunt yet again. It would have become an emergency thing because the doctor is leaving for an out of town funeral just after Shawn's surgery. He had his office cancel two other surgeries to make sure Shawn is seen tomorrow before he goes. Thank goodness he listened to me.
Seems like this whole day was set in motion by someone watching over us. I'd like to think it is that way at least. May that someone continue to watch us and bless us with health.
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Again, I ask of you to please keep Shawn in your thoughts tomorrow. We want option 1 to work. It has to work. Please let it work. No infections. Please no infections. Please, please, please.
Tomorrow is the follow-up for Shawn's surgery. Of course the appointment is set for a time that guarantees that we have to set out in the middle of LA traffic, so we are giving ourselves a two and a half hour window to get there. The thing that sucks most is that it is only 54.6 miles away from here. Why that needs to take two and a half hours always boggles my mind. The people who planned the freeways here sucked.
I am most anxious about what we'll find out at the appointment. Shawn has begun to get fussy again, so I am concerned that maybe the shunt isn't working the way it should. Plus, his soft spot has begun to bulge a little bit. I am not sure if that is because his skull is moving closer together and sort of squeezing the soft spot, or if it is because there is another blockage and the shunt isn't draining correctly. I may just be paying too close attention to it in the first place. It is still "soft", so I don't think there is any immediate danger, but you can bet I will literally be keeping one eye on the thing all night long.
The poor baby acts like he feels miserable. Tyle.nol will take the edge off, but I feel like I am using it too much and that I will just drug away his first few months at this rate. (don't worry, I am following the directions from the pediatrician about dosage)
So I suppose I just get to wait until tomorrow and see what the surgeon says. We have a list of questions to ask him. Wonder how satisfied I'll be at the end. Probably not very. I never seem to be after appointments anymore.
I still don't have an appointment with the neurologist yet. If they don't get Shawn in this week--sooner rather than later--then I am off to find a different doctor. Why have this guy as a doctor if I can't even get the boys in to see him? Plus, the receptionist didn't instill a lot of confidence in the office either. I had to tell her that he had surgery to get his shunt revised. Um. That should be common knowledge for someone who deals with patients with brain issues. Duh. Talk about someone who was uneducated.
I took Jason over to my parents' house for the night. We decided it would be easier to just have to manage getting Shawn out the door tomorrow morning. I was walking back to my car after leaving him with my mom, and I was struck by how easy it was to leave him and not have him with me. All of the NICU days have managed to cure me of my fear of others caring for him, it seems. Of course, it could just be that I trust my mommy.
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Thank you for sticking around and giving me such kind words of support. I realize that this place must seem so depressing lately. All of this can't be much fun to read. Again, I want to direct you to my alter ego blog if you would like to see pictures and what not of the boys. Just please remember to not leave comments there if you think that someone can find a way to link back to me here. You can post them here if you want to say something. (I have a very nosy SIL who would love to gossip about all of this stuff to whoever would listen to her. Shoot, no one would have to listen, she would just spout off to the wind if she thought that was all that was available.)
Monday, March 24, 2008
I have yet to get a really good sleep. Let's face it, even the naps haven't been that great. I close my eyes and dream about bald spots and spiders and being chased by evil men in dark alleys. Demons are after me when the world is dark. They haunt me and remind me that my world is not okay right now. It isn't fun.
I know all of that is brought on by stress. I have tunneled so far under a mountain of stress that I don't think I will see the light for years to come sometimes. Then there are the fleeting moments when I can forget. I come up for air. Enjoy. Those moments are a blessing, keeping me going until the inevitable happens, and I tumble back down the never ending hole of worry, doubt, and intense fear that next time we may not be so lucky.
Shawn wants to be held all the time, which while comforting to some degree, is slowly driving me insane. When he is nestled against my chest, with his head under my chin, I stare at him. I have become obsessed with his soft spot. I find myself analyzing its firmness, its temperature, its look while I hold him. That soft spot never leaves my sight long enough for me to truly get the picture of it out of my head. I watch it constantly. Is it bigger than it was ten minutes ago? What about that firmness? Okay, it isn't so firm when he stops crying. That is okay, right? Questions fill my head.
He continues to improve each day, but he is still...different. That terrifies me more than anything. How much did this event impact him and his development? I hate that there is no answer for that. I just want someone to say that he will be okay. They will be okay.
But no one will. No one knows.
The unknown sucks.
Thursday, March 20, 2008
I am beginning to think my life is becoming similar to a soap opera (with a less attractive cast and even less stylish clothing) because things just keep on coming.
I am just home from an emergency room visit, a three day hospital stay, and yet another surgery for poor Shawn. He is wiped. We are wiped.
What started Friday as what I thought was a cold we caught from all of the doctors' visits, became an all out vomit fest by Monday night and early Tuesday. I knew he wasn't dehydrated yet, so I was going to wait until Tuesday afternoon to get to the pediatrician (her drop in hours). That became more urgent when I woke up after a brief nap Tuesday morning and saw that Shawn's soft spot was starting to bulge and his head was beginning to swell.
I knew that meant this was from his shunt.
From that point on, things are a blur.
I called the ped to get him in first thing in the morning. She set up an appointment at our hospital for a CT scan to confirm my suspicions. Once we knew for sure that it was his shunt, Isaac and I headed out to the nearest hospital with a neurosurgeon (we don't have one in our county), which was two and a half hours away in the lovely morning traffic.
Shawn was admitted on Tuesday night (after a super long emergency room wait) and placed on an IV for dehydration. He had shunt revision surgery yesterday. Of course that meant intubation again. I prayed with everything I had that he would come off that vent quickly. Thankfully, he had been extubated right after the procedure was done! He started eating almost as soon as he was back in his room and continued to do well all night long. We were discharged at around noon today.
He is still tired and looks okay right now, but I am concerned about a few things that still aren't back to normal. I am trying to get his neurologist to see him asap to ease my mind that there isn't any seizure activity going on with him. (I have to call back and talk to his regular receptionist tomorrow. The idiot I talked to today said they didn't have anything until April 6th or something. Umm. I don't think that is acceptable. Hello. He just had surgery on his brain.)
I am so looking forward to a few years--scratch that, a few months--crap, I'll take a few weeks without anything happening to any one of us. Is that too much to ask?
**Update
I think I am so tired that I can't sleep. I hate when that happens. All I want to do is close my eyes for around twenty days and open them refreshed and alert. It doesn't seem it will happen that way...
Anyway, you asked about the shunt. It looks like Shawn was never really sick with anything. The increased pressure in his head was what caused the vomiting. (note to self: question it EVERY time he throws up from here on out) From what the neurosurgeon said, it looked like the shunt was no longer working at all for Shawn. Who knows for how long. They drained "a sizeable amount" of fluid, made his tubing longer, and repositioned it so it reaches the fluid in his ventricles. They tested the removed fluid, and there is no idication of infection in the shunt--great news.
Apparently, shunt revisions are not uncommon. When his shunt was originally placed, it was optimal for draining the fluid. But, when the pressure in head decreased and his head size came back down to normal, the shunt was no longer in a good place. (I think of it like this. You know the large laundry detergent bottles with the pour spouts on the side? The spouts work great until the liquid level falls below where the spout is. Then you have to tilt the bottle and move it around until the liquid can be moved to the spout. The shunt was kind of similar for Shawn. Where the fluid was in his brain no longer reached the spout of the shunt. Make sense?)
Shawn will most likely need his shunt for the rest of his life. It is possible for some children to have their shunts removed, but this incident pretty much told us that his ventricles are still clogged and won't allow the spinal fluid to drain from his head down his spinal column. Further revisions may need to be done to reposition the shunt to the appropriate place as he grows. I want to believe that this was the last revision that Shawn will have, though.
One of the things that gets me most, even more than the surgery itself I think, is that they had to re shave the little stubbly hairs that finally started growing on his scar from the first operation. :-( That thought brought tears to my eyes when it first occured to me. Isn't it strange what the mind will grasp onto when it is stressed and tired? I haven't seen the actual incision site, as it is bandaged, so I don't know if my imagination is making it worse than it actually is or not.
Another sad thing for me is that Shawn has lost the tiny smiles he started giving me just before this happened. It breaks my heart. I pray that they return quickly to his sweet little face.
But, as an interesting twist, Shawn has had absolutely no reflux issues since he started eating again last night. He is still getting his zan.tac, but we have not given him any cereal to thicken his formula and he seems fine. No crying. No squirming to get away from the bottle. No wet burps. He is fine so far. I am not sure if this means that the feed problems started as the pressure in his brain increase (another note to self on that) or if it is just that he is damn hungry from not having food in his body for days. I don't know, but I'll take it.
Friday, March 14, 2008
I have backed away from the edge just slightly. I cried. I got mad at the world. I am feeling better now.
I called the boys' OT and talked with her about what the doctor said and seemed to see. Interestingly, she wasn't committed to saying that he was a high risk for CP. She didn't discount it as a risk, but it was a risk from the moment they were born early and she didn't see anything that would make her lean toward saying the risk had increased. While the doctor was pleased with Shawn, her concerns were for Shawn because he was tense for her (apparently that isn't good either). She did note some low muscle tone in Jason, but what she noted was that he was well within "normal" for his adjusted age. Actually, they both fell within that mystical normal range for development.
The OT is quite experienced and has been doing this for several years. She is knowledgeable and innovative. I like her and I think I trust her--but then again, should I trust anyone when it comes to the boys? And then again, how can I not?
So what do I think? My heart wants to believe all is okay. My head is scared and flying all over the place with worry. I am not sure what my gut says. Is it my gut that makes me afraid or just my over active mind?
So now I am trying to follow the guidelines of IF there is something going on with Jason and Shawn, they are getting early intervention that will minimize and possibly help to correct whatever it is.
That is the best I can do right now.
I just hope it is enough.
I am beyond devastated.
I am so sorry I did all of this to you boys. So very sorry.
The doctor did say that he is still too young to diagnose and that he wanted us to prove him wrong.
Oh please let us prove him wrong. Please...please, please, please.
The guilt is back full force. I am not sure if I'll be able to shake it this time. I just so wish I could go back in time.
Thursday, March 13, 2008
The doctors want the boys to get blood work done to make sure their kidneys are functioning well. Shawn also needs to have one more renal ultra sound to check his kidneys. Assuming that the b.w. comes back clean for both and the ultra sound looks okay (or no worse than it was), Jason has no further follow-up needed and Shawn will just need to be monitored in about 6 months as a precaution. They think the kidney will return to "normal" with no intervention. Yeah!
The nephrologist also said that the NICU was very thorough and that they (our NICU) tended to be pretty cautious. Boy, do I know that! She made it seem like their concerns ended up being pretty minor.
Another bullet dodged.
And...
And...
Shawn gave his first real smiles to Isaac today while we were at UCLA. He is exactly 8 weeks adjusted today. This is a little on the slow side, but according to BabyCenter, not too terribly bad. I cried and cried when I saw him do it. I can't tell you how much that little grin lifted my so very scared heart.
Maybe tomorrow won't be as bad as I fear?
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This week is and will be crazy. It started off with a visit to the pediatrician and the eye doctor (on the same day--what was I thinking?).
Tomorrow, well, today because it is after midnight, we go to UCLA to visit the nephrologist. Shawn had a slightly enlarged kidney on an ultrasound during our NICU days, so we are going to have that double checked. We are hoping, as it was suspected, that the enlargement was due to the infection he had at the time and not due to something else. Jason is going too because they seem to do things together, plus he had that mysterious urinary tract infection the day he should have been discharged, so we wanted to double check him as well. (Back to that all for one, and one for all thing again.)
On Friday is the visit I fear the most. We go to the neurologist. I think that is the appointment that is keeping me up at nights.
Anyway...news from the doctor:
Shawn:
weight -- 10.6 pounds
length -- 22 inches
head circumference -- 8 cm
shot count -- 4 (2 in each leg)
25%ile-35%ile for his adjusted age!
Jason:
weight -- 11.6 pounds
length -- 23.5 inches
head circumference -- 8.5 cm
shot count -- 4 (2 in each leg)
50%ile-65%ile for his adjusted age!
They are hitting pretty much all the milestones (except that pesky smiling for Shawn, which is so close I can feel it--still not freaking out about that quite yet, but I am getting close) for their adjusted age, and most for their actual age. The pediatrician was quite impressed! I tell you, they are geniuses!
Even better news is that the boys' eyes look so good that they don't need to go back for a follow-up until they are over a year old! Whoo to the double Hoo! There is no sign of ROP and their eyes look great. Whew...(hand wipes brow)
It has been a tough few days for the boys (and their mom). They are not feeling too great and have been pretty clingy. Last night was pretty challenging. No one wanted to sleep but me. I finally resorted to sleeping with both of them on my chest. (Try that one--it isn't as easy as one might think!) Of course Isaac became a member of the sleeping dead and didn't hear anything all night long. Thank goodness for Tylenol!
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All of this has left me totally pooped but wide awake. Go figure. Maybe now I have reached the over tired and delirious stage?
How is this for delirious? We are going to start trying again next month. I am deathly afraid that I will be tempting fate and may cause another baby to have potential problems, but I want so desperately to believe that things will be different for all involved next time. No preterm labor. No bed rest. No NICU. No fears of the babies health (I know that will be there still, but I can try to fool myself, can't I?)
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Well, it is official that I will have a job to go back to next year. There has been a lot of discussion about making me move to another school because they are restructuring ours. Apparently the district wants to cut positions at my school, so they are eliminating two teachers in my department. The talk was that it would be me and another teacher because we have multiple subject credentials and would be easy to move. I cleared with personnel today that I have enough seniority within the district to stay put. Whew. I am sad that someone else will have to go, but I am very glad it isn't me. I was not looking forward to having to learn an entirely new curriculum AND try to figure out what I am doing in this parenting world at the same time. I know what I am doing in the grade level I am at now. That is a good thing in my book!
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Okay, my cat is totally snoring right now. What is with that? Good G-D, both of them are snoring now. I am surrounded again!
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The feeding thing is going much better with Shawn. (Please don't tell me I jinxed myself by saying that.) The crying has ceased for pretty much all of the feedings with a few exceptions. It can still be a challenge if he has some pent up gas or hasn't pooped yet, but all in all, it is like night and day. I think I am going to pass on the referral to the GI doctor right now. He has been through so much, and I just hate to add one more thing now that it looks like things are going so much better. I will change my mind on that, though, if/when things go back to where they were.
Ugg. It was awful. I hated having to worry about every little drop that he was eating. I felt like I was the formula nazi, always forcing him to eat, eat, eat. Now that things are easier, I don't feel like I have to work so hard to get him to eat what he needs to each time. It is a really good feeling!
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Anyone have any ideas on what to do for my poor, very dry hands? All of the hand washing I am doing has made my knuckles so dried and cracked that they bleed. I have tried all kinds of lotions. Anything with perfume in it makes my hands break out in hives. I was using the left over stretch mark lotion I had, but now even that isn't enough. They just plain hurt and they are so ugly it makes me self conscious. I need help, so please let me know if you have something that you think will work.
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I got my tax refund back. It was a nice chunk of change thanks to a butt load of ivf and hospital bills. I was all excited to finally be able to claim dependents, although it wasn't as satisfying as I thought it would be. We apparently make too much money together to get the full credit. I was so sad about that!
Anyway, the money will come in handy when we get our larger car. It seems that two car seats are a little too much for my sentra's back seat. I have to hug the steering wheel when I go anywhere with the babies. I know I have long legs and all, but still. It isn't pretty.
My dream is to get an Acura MDX. I love it. I am not sure if the old bank account will love it along with me, so I can't say that is what we'll go with. I seriously am going to take the car seats with us when we shop. It wonder if that will shock the dealers. Nah, I can't believe I would be the first person to have done that. I am not, right?
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Jason sucked his arm so hard the other day that he gave himself hickeys. Is that common? I hadn't ever heard of kids doing that before. And it isn't like the boy is starving either! Thank goodness they faded before we had to go to the doctor's. I was afraid she'd think I beat him or something!
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I leave you with some pictures of the boys. I took them yesterday and today...
Today, the boys got the chance to sit in their Bum.bo seats. Jason absolutely loved it, but Shawn didn't care for it much.
Here is Jason in his seat--all smiles, just like usual.
Try as I might to keep this kid from watching television, here he is indulging in a little bit of a soap opera (I seriously try to keep the television either off or not in his line of vision, so don't hate me for this.) He is very worried about John and Marlena's relationship at the moment. (Did you notice the furrowed brow?) Sigh. ***
I also got the boys little play mats for tummy time.
Here is Jason on his...
And now here is Shawn, not so much playing as napping...
***Isaac says we are to limit their television viewing to two hours a day...either educational or football, so they don't ruin their appreciation for the finer things. (that is from Raising Arizona and he insisted I put it here)
Friday, March 7, 2008
Wednesday, March 5, 2008
No big guns for us unless he doesn't seem to be gaining. The pediatrician did suggest we mix rice cereal with his formula, which I have already started to do. He didn't spit anything up, so I guess it helped some, but it is still too early to tell. (Although it did give me a chance to take Shawn on his very first outing to a place other than a doctor's office. It was fun, even though I was paranoid about touching anything and giving him some sort of super germ. I blame my husband for putting that thought into my head. I never would have worried about that one on my own.)
I also found that the switching his nipples back to the smaller size calmed him a lot. I guess the poor boy thought the regular drownings, I mean feedings, meant he had to fight with all he had for survival. With the smaller nipple (with an added little knife prick to increase the flow a tiny little bit), we both have stopped the crying that started to be a regular part of our routine. Thank You, God!
Anyway, if I still have trouble with feedings by next week, then she'll send us to a gastro specialist to see what is up with him structurally. I suspect that if there was a structural issue, it would have already been found--I think he has had just about every test under the sun as it is. I sure hope the cereal does the trick and we never have to get to that. Please let this be the trick. Please.
I am in a much better place, my confidence and outlook are restored, and all is right in my world for the time being. Yeah.
Monday, March 3, 2008
Went to the pediatrician for Jason's RSV booster. (He weighs just shy of 11 pounds. Yeah.) Told her of the trouble we are having feeding Shawn, and she said to bring him in for another weight check and discuss other options. We go in on Wednesday, even though they have their 4 month appointment next week. I sure hope she can help. It is killing me...
Sunday, March 2, 2008
By popular demand, here are a few more pictures to satisfy your picture addictions...
This picture is of Isaac, the human heater. He is warming the boys up after their baths. I am totally useless as a heater, so I get to bathe them and clean everything up afterward. Doesn't seem like a fair trade if you ask me!
Here is Jason wearing his twin shirt. I don't know if this meant anything or not, but about fifteen minutes after this picture was taken, Jason peed all over his outfit. Hmm...
With all of the time it takes to care for twins, we needed to invent something to make cleaning the house easier. We tried several things, but finally settled on this...
It is dual powered and never loses suction! In case you can't tell in the video (sorry it is so dark), it's of the boys trying to eat their blanket a whole 5 and 10 minutes after they ate. Sigh.
And lastly, here is a blurry video of Jason rolling over. I am so proud of them both!
Saturday, March 1, 2008
10 Things You'd Never Hear Me Say...
Here is a meme I have seen on quite a few blogs over the last several weeks.
Ten Things You'd Never Hear Me Say...
- Please take this chocolate away.
- Ooh, chicken! Yum!
- Reading is for nerds.
- Who needs a laptop? I sure don't!
- Coke is better than Pepsi.
- See my pretty toes?
- I am hot. Turn the heater down.
- I hate cats.
- These pants make me look fat.
- Look at my cleavage. (couldn't even say that while pregnant)




