How’s Warren Doing?

I had Warren’s placement meeting for preschool yesterday. Two hours after it began, he is officially ready to start preschool on his third birthday if we so choose. It went as expected… paperwork, followed by more paperwork, followed by a little bit more paperwork. The big picture of it is that Warren qualifies for special education services under the multiple disabilities “label”, if you will. The recommended therapies for him via the school system are PT once a week for 30 minutes, OT twice a month for 30 minutes, Speech for once a month for 30 minutes, Visually Impaired therapy once a month for 30 minutes, and Nursing services daily (as a nurse would have to administer any meds and give him his G-tube feedings).

I agreed to these limited amount of services for two reasons: one, Warren will not be in school for five days a week from 8-2:30 and two, we are able to continue with our private therapies. He obviously cannot have therapy every day like he does now if he is also attending school, but it’s workable. I did express how I didn’t think that once a month served a valuable purpose, but it’s hard to argue when I honestly don’t think he’s even going to school in April. I can change his services whenever I deem necessary, so with where we are right now I am fine with the end results.

His placement is in the developmentally delayed preschool classroom that we visited several months ago. There’s a teacher and assistant with no more than 6 children. Again, with where we are right now with his seizures, he’s not going anywhere. We do head up to Duke next week, so I pray that in 6 weeks we are in a different place with those. Regardless, most of my concerns revolve around giving up some control.  When Warren can’t tell me anything that happened to him that day, I have a really hard time just dropping him off and hoping he’s taken care of. How do I know that the therapists are really trying with him? Is the nurse rushing through a feeding b/c she has other things to do? Did anyone console him during a seizure? Is he kept in a safe position after he eats? Not sure that I’m ready to let someone else be responsible for his well being right now.

Plus, we’re on a horrible schedule for school. He sleeps too late in the morning to be at school on time, plus he gets his very important seizure meds in the morning which would fall during the school day. I really don’t want him getting those meds at school. So again, I’m just putting it on the back burner for right now until we get the MRI results and see where we’re going from here. I’ll keep you posted.

I made it through the entire meeting without really getting irritated which was nice. The only thing bothering me is when I had to fill out the school forms after the meeting was over. She was showing me which parts to fill out and when we got to “Siblings”, she crossed it out and said quietly “don’t need to do that”. I was mad at myself on the way home for not saying something. I know she doesn’t need me to put the boys names down for obvious reasons, but I should have said something because in our home… Warren does have siblings. I’m sure they got the “remember she lost the twins so don’t say anything about them” speech before I walked in. Just for the record, it’s much better to acknowledge a tragedy such as ours versus pretending they never existed. The irony? She was the social worker. It wasn’t a big deal and in no way do I fault her, I just should have said something. Moving on…

Otherwise, he continues to have one or two of the BIG clusters of seizures each day. I never know when it’s going to be, but they are frightening to me to watch. The ones where he cries are heartbreaking and sometimes they’re couple with this almost panicked sound like he’s trying to get out of it but can’t. Uh… let’s pray we can catch one on video to show our neuro next week. Hard to do, as there’s no warning it’s coming and it’s over before we can get the camera.

He did lose his dinner last night which included sweet potatoes. Lovely. He lost his dinner once last week when Craig was gone, too. Twice in one week is a lot better than once a day, but we had gone for several weeks with no episodes. He keeps us on our toes… always! Time for those mornings meds.

Have a good Wednesday.

Amy

Ah, yet another week is almost gone. Today is going to be a good day because Warren and I are heading out this afternoon to pick up Craig from the airport. He’s been in Florida all week, and Warren and I are both sick of each other. The small window when his CNA is here is pretty much the only adult interaction either of us has during the day. When she left yesterday, I didn’t speak to another adult in person for the rest of the day. That would drive me crazier than I already am if I had to live like that every day. Whew… soooo glad that Daddy will be home in a few hours.

Let’s see… I did make my gazillion phone calls last week. It literally took me hours between finding the numbers, being on hold, transferring to this person and that person, digging through paperwork to find information someone needed… just a lot. But, it’s done. Well, I say that but all of those phone calls led to several more appointments for Warren and envelopes pouring in daily from treatment facilities or insurance. I’ve said it before and I’ll say it again, I need a secretary! So, we’re adding to our repetoire in addition to a neurology appointment at Duke, a nutritionist appt at Womack, and an orthopedist appt at Chapel Hill… oh, that’s just in March.

Next week is his IEP meeting for preschool (another meeting in March). This is our fourth out of the four required meetings before placement takes place. It’s this meeting where all of the therapists state what kind of therapy the school system should provide for him, how often, and what the goals for him should be. Right now, I’m not in a place where I think I’m going to send him in April. My mind changes week to week, but that’s where I am now. Especially with these seizures, I just prefer the one-on-one he gets right here at home. Again, though, his birthday is still 7 weeks away, so we’ll see where we are. An IEP is good for a year, so even if we don’t send him in April but decided to try it in August, the paperwork would already be in place.

Speaking of his seizures, they’re continuing to worsen. I thought the other day… I wish we just had to contend with the brain damage. I couldn’t believe I was thinking that, but it’s the truth. The seizures just make everything more complex. Anyway, he has started having one or two a day that make him cry. He’s not aware that he’s crying nor is it an “I’m hurt” cry, it’s just a typical, child’s cry. The lip starts to pout, his eyes start to water, and depending upon the length of the seizure, he starts vocalizing the cry. It is pitiful. He cries… I cry. We’re such a mess. Anyway, when the seizure is over, so is the cry. So strange. There are other times when he seems absolutely elated during them, and you would think it’s the happiest face if you don’t know that he’s in a seizure. These new characteristics continue to be so frustrating because it seems like month to month they change when nothing else has. I did a lot of googling about a happy or crying seizure. There’s a lot of info out there about them… too much. So, we head to Duke in two weeks to get the results of the MRI and hopefully get some answers about this. I’m so on edge when his seizure cluster starts because I don’t know if it’s going to make him cry or not… tired of the edge.

I got the results of the X-rays, too. His hips look good. Hallelujah!! There is a slight curve in his spine around the chest area, so we were told to tell our PTs. I just got that information today. I hope it’s something we can correct. Ortho is beyond my scope of knowledge for the time being, but I’m ready to learn!

I’m dreading that this is the last week of February because March looks so busy. I guess it’s good in a way because it keeps my mind occupied on something else. No plans for our weekend which is great. I’m just going to enjoy having Craig back. I know he was only gone for four days, but I’m very spoiled at having his help starting at 5:30 every day. I can’t even tell you how much I look forward to that time!! Have a great weekend. I’ll update after his IEP… Tuesday, I think… and tell you how that went.

Take care,

Craig, Amy, and Warren

Let’s see… trying to remember what’s happened over the past week is like pulling teeth for me. I can hardly remember what we had for dinner last night. Since nothing jumps out, I expect that everything has pretty much been typical. I have no results from the MRI or the X-rays we had taken. I emailed both our neurologist and neurosurgeron earlier this week to make sure they were aware that our MRI had been done. Since we’re heading up there in 3 weeks for a neuro appointment, I wanted to make sure that they looked at it before we get there. They’re hopefully going to discuss Warren in what they call their weekly epilepsy conference where basically all these brain docs get together, review the data, and brainstorm what the next step should be. I hope that can get done before our next appointment.

Getting the results from the hip and spine X-rays are on my “to do” list today. That list is LONG. I’ve let it add up so that now, I have an entire page of phone calls to make… insurance, appointments at different facilities, etc. I’ve been dreading today since last week, but the time has come for me to start pouring through them. A lot of appointments to be made stem from our visit with Dr. Cooper. Two of the specialists are at Chapel Hill, a place unfamiliar to us, so I’m sure that the first person I speak with won’t be the right person. It always works out like that. I do hope that they accommodate us like Duke does and will do their best to get both appointments on the same day. We’ll see. Once Warren’s CNA arrives, I’ll get cozy with the phone and my calendar. What a fun Thursday, huh?

Warren is doing fine. For Valentine’s Day, he got some new PJs and a 12″ wedge. You’ve seen him lying on his wedge on the floor in pictures; this wedge is about twice that height. We’re hoping that will help strengthen his tummy muscles as he attempts to pull himself up off of it. Most kids get candy and a toy… mine gets a foam wedge. Sad to me. I did search on the computer for a while trying to find him an affordable new toy that would benefit him. No luck. He’s in need of a new feeding chair, as he’s quickly outgrowing this one. I didn’t want to spend thousands on that for Valentine’s, but it’s inevitable in the near future. It still boggles my mind how plastic and velcro can cost so much! Craig and I don’t do Valentine’s gifts. We try and get out for a nice dinner and thanks to Warren’s CNA Monday night, we did. I did get a dozen roses delivered Saturday morning with a card reading “Happy February 13th”. That was Craig’s way of getting me flowers yet saying they weren’t actually for Valentine’s. Clever and sweet!

So, we’re trucking along. The bronze is in for the twins’ grave. They emailed to let us know that we could come and see it. No thanks. They emailed and asked if we’d like to be present during the installation at the cemetery. No thanks. I think seeing the names of my children on a plaque in a cemetery is not anything I care to share with anyone else, especially not some strangers. It should be installed within the next week or two I’d imagine, so now my mind has to turn to getting flowers made for the grave. I was talking to Craig about that and said, “I just hate that we’re having this conversation.” Necessary, though… just still stinks.

On that note, time for Warren’s meds. Hope your Thursday is great followed by a nice weekend. Thanks for checking in.

Craig, Amy, and Warren

I have no time. Warren just woke up, so my eyeballs need to be on him. Just checked in and realized that it had been a week. I will return today or tomorrow…

MRI was yesterday. Warren did awesome. Although it was a longer day than anticipated, we are through it. Our appt. at Duke was at 10, so we headed out around 7:30 yesterday morning. For the current sleep cycle, that’s earlier than Warren wakes up, so… I dressed him in his jogging pants the night before, threw socks on him yesterday morning, and loaded him straight from his bed into the carseat. They were running late, so there was a lot of waiting. Thankfully, one of the main concerns in the peds recovery triage is the IV and trying to get it as calmly as possible. They put numbing cream on all possible IV sites and gave him a sedative. Although I literally felt like I was having a heart attack, the nurse got the IV on the first try with no peep from Warren. After they knocked him out completely, I went with him to the MRI which took about an hour… long and LOUD! He didn’t want to wake up in recovery. So cute barely opening his eyes and trying but just not wanting to. They gave him an IV of fluids, and I fed him a little bit for the first time around 1:30.

Then, we had to check his shunt because the magnet from the MRI can reprogram it. That was another 45 minutes of waiting for a radiology room where they could take the X-ray. Anyway, we got that done, and his shunt looked good. The tech showed us how they read the valve via the X-ray which was great to know. So, we left at 7:30 yesterday morning for one MRI and pulled back in the driveway around 5. No results. I’m not sure how long that will take either. Something tells me that I’ll have to call our docs and check versus them calling me… seems to be the process. He seems to be back to his normal self this morning.

That’s where we are. Today is back to therapy for Warren and returning phone calls missed for me.

There were tiny twin baby boys in the waiting room yesterday. Uh… I wanted to smile at that mother, but my heart was just too heavy. It’s almost been 8 weeks now. I’m faking that life is just peachy and I actually feel sad that I don’t appear sad enough to people (if that makes sense). You cannot always see grief. I have found a little comfort in a book I just read titled An Exact Replica of a Figment of My Imagination. A friend who has experienced the same tragedy sent it to me. It’s an autobiographical account of a woman whose first son was stillborn at 41 weeks. It’s affirmation that the thoughts in my head aren’t irrational, as she shares many of those exact thoughts via her words. I read most of it rocking in the nursery and actually found it quite comforting. People say they know or understand how you feel, but I’m grateful that most of them truly don’t. If you haven’t gone in to deliver your child knowing that you wouldn’t hear that priceless first cry… or you haven’t been to your own child’s funeral… you simply can’t. That’s one of the things I learned with Warren… I try to never say that I know how you feel if I haven’t had that same experience yet. This book is from a woman who does know how I feel. I am grateful to my friend for sending me that story. As with always, we forge ahead.

So, today is Wednesday… just another day. It’s not a Friday which is another weekly anniversary of their burial… or a Sunday which is an anniversary of their birth (I choose that word instead of death)… just Wednesday. I’ll watch Warren’s PT… pick up some Valentine’s for some special ladies in his life… see my boys as I’m feeling quite suffocated at not having been there in several days… and then spend the afternoon as I do every day: taking care of my ‘lil guy!

I hope you have a wonderful rest of the week and enjoy your Valentine’s Day with someone special. I will.

Love to you as always,

Craig, Amy, and Warren

We finally made it to our new developmental pediatrician this morning with Warren after it was rescheduled for the fourth time. She’s right here in town at our local army hospital, so we were hoping that it would go well and we could drop one of our Duke docs that has not been impressive lately. Well, she is fantastic!! Her name is Dr. Cooper and before I go any further, as we left I said to Craig, “I feel like we did something right for our kid today.” What a nice feeling.

Anyway, questions that we have asked various doctors along the way were finally answered today. She is very thorough. One of the first things she said was how “amazing it is that Warren survived the AVM rupture… what a catastrophic thing to happen.” Our little miracle boy! Anyway, the short of it is this: she has put in an order for us to see a GI doctor at Chapel Hill, an orthopedist at Chapel Hill, a PT evaluation for aquatic therapy, a nutrition consultation, and we had 2 X-rays done today while we were there. Whew! We’ve wanted to see a GI for some time, and she didn’t hesitate… said it was “needed”. Same for the ortho. The concern with Warren and ortho is mainly in his hips. If you don’t bear weight on your legs, basically the ball and socket that is your hip can begin to slowly slip out. One of the first signs of this is when a child hunches to one side which Warren does. We cannot keep that child straight. I’m concerned about that but glad that we are taking the first steps in hopefully correcting it. If it gets completely out, it will require surgery to correct and a cast for 6 weeks. Please, oh please let us avoid that! That’s why we got the X-rays today for one. The second X-ray was of his spine, as there is a curve at the base of his spine. With his side sitting all the time and preference to keep his body facing one direction, this is to be expected but our awareness can hopefully lead to some correcting of the issue. A lot of that can be resolved with positioning. We are requesting doctors at Chapel Hill versus Duke for a simple reason: not having to fight our insurance. Since Chapel Hill is in the network, we should be able to get there a lot easier. As long as it doesn’t pertain to his brain, I’m fine to go there. It’s those brain docs that I want all in one place! Not sure how long it will take to get an appointment, but I feel so much better knowing that someone is helping us.

So, the little one did well. He pee’d everywhere during our appointment in Dr. Cooper’s office which is always entertaining. He refrained during the X-rays, as we had to kind of hold him down. He was a trooper! It’s an awful day here… cold and raining, but I managed to get him indoors, and he’s super sleepy now with a full belly. Time is ticking for his nap.

I’m not going to talk about me today because I simply don’t feel like it. We are forging ahead. Weekend seems nice… date night with my beloved tomorrow night and then of course… the Superbowl Sunday. Our MRI at Duke is next week, but I’m trying not to think about it. Sedation makes me nervous. I’ll update when we get through that. Thanks for checking in, as always.

Love,

Craig, Amy, and Warren

This will be brief because I’m in an irritated mood. Because my life sucks in the big picture? No. Just the every day annoyances that you all deal with. The latest is that no one at Lowe’s will answer the phone to tell me if my delivery is going to happen tomorrow or not. I don’t want to get up and dressed for something that isn’t coming. Trivial… yes. But still annoying. My fuse is short these days.

My easily irritated mood is probably because I’ve been on edge for the entire morning. Warren had a really big seizure this morning. The same type as always but the look on his face combined with some whining sounds had me panicked. Of course, it’s the one morning where Craig left his cell at home, so I couldn’t even call him to calm me down. He’s much better in those situations. Anyway, I scooped him up and rocked him… kissed him… talked to him… he came out of it which I knew he would, but it was still stressful for me. I’m in my PJs… barefoot… thinking that I’m completely alone on making whatever decision is necessary to keep Warren safe. I’m still not over it. He’s had one like that before several weeks ago, but this time I was home solo. I was going to run an errand or two today, but nope. Here I am. Not leaving him today. He’s been fine. Had his typical seizures like usual… is chatting and playing like usual… just napped like usual. I emailed his neuro this morning to give him a little update and see what he says. Of course, any response from him just depends on his day… is he in clinic? doing rounds at the hospital? off? Exhausted by the mysteries of Warren today.

Overall, he’s doing just fine. Got the cold out, and he’s been back in his bed for almost a week. Therapies have gone well to include our weekend therapy with Miss Julie last Sunday. She’s very confident that we can get him to sit up if we can just strengthen his lower back. She said that due to his right side affect and that he keeps those muscles contracted more, she noticed a slight curvature beginning in his spine. Ugh. He needs a lot of stretching to keep it elongated. We chatted a lot about school, too, so we’ll see how that goes. When he has seizures like this morning, there’s no way I’m putting him anywhere. MRI is on the 9th. Hopefully, we can move forward from there.

Our appt. with the new developmental pediatrician was cancelled for Monday, but they hope to reschedule for later in the week.

Other than Warren, we are doing okay. No choice but to move forward with life. I appreciate so many of you extending the offer to open up about the twins or whatever I want. I went to the grave yesterday… go about every other day right now… and they’ve laid grass now. It’s not a mound of dirt any more. I hate watching the process and am really dreading the bronze with their names coming in. The finality of seeing that is something I’m in no rush for. Otherwise for today, at least, I don’t have much more to say. Still very numb. Heart is very cold. The precious hours that Craig and I were able to spend with those two perfect babies are all the memories I have. I need to keep them for now.

Have a good weekend. We will be in the house avoiding the cold and ice. As always, thanks for checking in and keeping my family in your thoughts. ( I just reread this post before publishing it, and my words sound so cut and dry today. As I said, my emotions are buried and this post is such evidence of that)

Many thanks,

Craig, Amy, and Warren

First of all, thank you. Your love and support via messages on this blog or emails I’ve received truly mean so much. Yes, I come here all the time. If you ever scroll down and look at the counter, I’d bet that half of that number is probably from me. I read your comments on the day that you write them and often times, I read them more than once. Your words are invaluable to me. Thank you for making me feel like it’s okay to write whatever I want on this blog. I often feel that the title is too narrow, as it’s really become a place to share my family with you… not just Warren. Aggie, I so appreciate your words. Really. Sarah, you’ve kept this blog going in a way that you probably do not even realize. Many of you would be surprised that I haven’t met either one of these ladies who are so dear to my heart. It’s funny, though… in times like these, the people that you’d think would be first in line to support you are nowhere to be found, but those whom you do not even know rise up to the challenge and carry you through. Amazing. Mrs. Hanford, you wrote that this would be a soft place for me to fall. I cannot shake those words. Thank you. Everyone experiencing a tragedy needs to hear different things. That’s why there’s not a right thing to say. Some things stick and that sentence stuck with me. Amanda, writing that most of what your sister heard just pissed her off… well, same here. It’s so true. I know that so many of my dear friends are here every week, too, so I just want you all to know that you do matter and your words and willingness to stick by my family are simply priceless.

How are we? Isn’t that the million dollar question. The rhetorical answer is fine. We don’t talk about it much. Life moves on, right? Not that I think it is the best way for me to handle my loss, but I have chosen for the time being to push it far away. I go through the motions every day with little emotion. I don’t cry much these days. Even when I go to the grave, I find myself staring at the dirt with just an empty feeling. No tears. No words. I just am. People tell me how great I’m doing, and I just want to scream. I don’t, though. If you see me, meet me for dinner, run into me at the store, whatever the case… I will probably seem just fine. It’s who I am. I don’t wear my heart on my sleeve. I’ve been told for too many years how strong I am, and so I fake it and put on the “there’s nothing wrong with me” show at the drop of a hat. Just know, there is not one second in the day that I am not thinking about Collin and Miller… replaying the hospital stay over and over again… the funeral… what we should be doing… their amazing faces. I do not feel satisfied with my life anymore and that is a very empty feeling. I want all 3 of my boys. People use the word “joy” a lot, but I don’t have that right now. It’s too deep of an emotion when I only have one of my three children alive. I have happy moments, but I think joy is a long time away for me. There are a small handful of people who see through the wall I have up. My pain is at the depth of my core… not at the surface for the time being.

So, I’ve kept myself pretty secluded to avoid society. I don’t go out much. I don’t want to be around other peoples’ children when all it does is remind me of all that I’ve lost. I don’t want to run into someone who may not know what happened and ask me about them. That’s not for my own feelings but for theirs. I don’t want to make anyone feel bad for asking. Craig and I had our first experience with it probably 2 weeks ago. We were out to dinner and the waitress, who has twins herself, asked, “Do we have some babies yet?” Uh, my heart just broke for her. She didn’t know and had no way of knowing. I felt like we ruined her night. The weather has been so nice here for a few days that I’ve been able to get out and walk. My heartrate literally starts to increase as I near some houses where I would chat with people all along my pregnancy. I know that many of them don’t know, and I don’t want them to ask. I hate putting people in that situation. So, that’s why I don’t mingle too much right now; I’m not the best of company, and I know it.

That’s where we are… living. My Warren is battling another cold again. I’m not sure where they’re coming from, but this one is hanging on. It started last Friday, so we’re on day 7 right now. His runny nose Friday developed into a bit of cough that night. We were in bed, and he coughed a little. Through the monitor, he seemed okay, but I thankfully decided to check on him anyway. I barely got to his bed when he threw up everywhere. The poor baby was on his back before I did a martial arts move to flip him at the speed of light in order to get him safe. It took a couple of days for me to recover from that. What if I hadn’t of gone into his room? What if I had been sleeping? Warren can’t help himself… can’t call for me… doesn’t cry out… it just terrifies me that something more is going to happen to that child. So, you’ll understand why tonight will also be the 7th night that he’s slept in our bed (he’s a bed hog, too!). Until there’s no remnants of a cough left, he’ll be beside me. What else? His foot/ankle has recovered. He’s doing some standing on it and letting me flex it now. Our PT that comes over once in a while but whose knowledge is invaluable is coming over Sunday morning to work with him for a bit. Craig and I both love her visits. I’ve been needing to call his neurologist but have put it off again. I just fear making a change for him when he’s eating well and still pooping on his own (WOOHOO!!!). It’s inevitable, but Craig and I are still wondering if we should wait until after the MRI which is in 3 weeks. If I only had an answer for something. We are seeing a new developmental pediatrician here in town on the 1st. She comes with high remarks from everyone I have spoken to, so I’m hoping we feel the same. It would surely be great to have one of our four specialists literally down the street.

I hope that you’ve gotten your “fix” for the time being. I feel like I’ve written a novel. Someone told me last week that she’s addicted to this site. I have been addicted to others, so I get it. It’s only been 8 days since I last wrote, but it feels like a month ago. Time is still creeping along around here. Again, you are all so dear to me, and I continue to thank you for supporting and praying for our family. Our journey does continue…

Love,

Craig, Amy, and Warren… I wondered before we lost the twins if I would put their names at the bottom of each post, too, or if I would leave it just the 3 of us since this blog is about Warren? Every time I finish a post, I think about that. They are always on my mind… always.

I come to this web page several times a day but never find the words to write. Today is no different. We lost the twins one month ago today. I know that one day I will stop counting, but my life is divided into how many weeks it has been at this point. Time is passing at an excruciatingly slow rate. We were emailed the proof of the bronze for the grave yesterday and had to “okay” it so they could start manufacturing. It’s still so surreal. My beautiful little boys…

I do have one beautiful boy in front of me… cranky… biting his bottom lip… wanting out of his chair… yes, it’s my Warren. He’s doing fine. Therapies have been back as of last week, and he’s doing as well as expected after having several weeks off. I’m not caring for people to be in and out of the house as my mood can change in an instant, but I’m faking my way through it as best as possible. Warren’s had a hurt foot/ankle/calf?? for the past five days, so we’re trying to figure that out. He can’t tell me exactly where it hurts, but he’s refused to stand on it… push off of it… let me flex it for several days now. It’s getting better, but these mysteries keep us wondering. Otherwise, we’re back to normal with hs eating for the most part. Back up to about 3-4oz./day, although yesterday he was a bear to feed. The other night an hour after hour tongue thrushing phase caused him to lose his dinner, but that’s been our only episode in about a week. As you can see, things are pretty typical.

My big boy (aka Craig) is doing fine, as well. He is as amazing as ever and makes sure that I laugh every day. One in a million, my friends…

Thanks for checking in and for continuing to pray for our family.

With love and thanks,

Craig, Amy, and Warren

I’m not back… just checking in. We are doing as well as can be expected. I have an empty nursery and an empty heart, so I’m pretty much just going through the motions. Craig headed back to work today, and Warren’s therapies start back up this week. I’m struggling with all of that because it makes it seem like everything is back to normal. I’m missing two of my children, so this “old” life is far from normal in my mind. I get up every morning because Warren needs to be taken care of… that’s the only reason. I can’t continue this blog regularly until I can come to you and write about something other than missing my boys. That time has not come yet.

While I am here, my Warren is doing fine. He’s always keeping us on our toes and hasn’t given us a break from that at all. Seizures are bigger and wearing him down… tongue is still quite an issue, although he’s handling his gags a bit better… throw-ups still happen and keep us at an arm’s length at all times… continues to struggle with his morning meds, as he tried to lose them just this morning… same ‘ole, same ‘ole. My independent pooper has been gone for over a week now. Frustrating to say the least. It coincided with him being on an antibiotic, so we hope that was the issue and he’ll get back on track. Please. Warren had one of his first typical ailments over the holiday with a horrible wet cough. For Warren, he can’t control extra drainage of any kind nor can he call for me if he needs help, so he spent about a week sleeping between us for safety reasons.

He needs to get back on track with therapies, as he’s definitely aware of the attitude around this house and responding. He’s been quite a lazy boy… lethargic… napping several times a day even after we were past his sickness… not as vocal, etc. We had some friends over for New Year’s so there was conversation and laughter… and more typical atmosphere… he was wide open. It just made it clear that Warren gets the vibe and when Craig and I are ho hum, so is our little guy. We need to get him back to being perked up, and I’m not the gal for the job right now. His therapy ladies plus his CNA wll do the trick, I hope.

That’s all for now. We’ve caught up a bit, and I’ll see you again at some point. We hope that you all had a great New Year’s. May 2010 bless us all.

With love,

Craig, Amy, and Warren