How’s Warren Doing?

Okay. Yesterday was quite a long day. Warren’s CT was at 2:00 followed by an appointment with our neurosurgeon at 2:45. I think we actually saw him around 4:30. It was a lot of sitting in the waiting room… a lot! We didn’t get home last night until 7:30. Long day for everyone, but fortunately my dad was with my wild child having a blast here at home!

So, no shunt. Hallelujah! The CT scan from last September actually wasn’t too different from the one yesterday. That is good news. There is one ventricle which has definitely grown, but Warren’s brain is everchanging. Our neurologist actually came into the appointment, too, and oddly enough he seemed more concerned with the scan than our neurosurgeon did. Both agreed that there’s some concern and a need for further delving. So, they want to schedule Warren for an MRI. That will be a long day because obviously Warren must be sedated for that. It will give them a more detailed look into his brain and how the ventricles actually look (i.e. if any pressure is being applied, etc.). We were supposed to have a 3-day EEG at the end of June where we actually bring him home with the EEG, but that has now been changed, too. They want to admit Warren for 3 days into Duke and do a video EEG there. Ugh. These are both extensive tests that will hopefully give us some answers. Honestly, they’re doing more than I thought they would. We’re going to increase his seizure medicine, too, but Craig and I agreed that we’ll do that Sunday once we get home. That’s where we are. They should be calling me in the next day or two with the appointments, as both docs want the test done within the next couple WEEKS. Yikes! Dealing with the hospital doesn’t sound like fun for anyone! I’ll keep you posted.

Otherwise, we’re holding steady. Warren is having some seizures just about every morning, but they’re not too big and pretty fast. Who knows?

Going backwards a bit. Hopefully, you moms out there had a wonderful Mother’s Day Sunday. My boys made me feel super special and extremely loved, although my heart was quite heavy… heavier than I had anticipated thinking of my sweet Collin and Miller. Monday was Craig’s birthday, so my sister gave us a dinner date out (a surprise to Craig). Tuesday was appointment day with one at 9:30, 11 and another at 1. Hard to get anything done in between those times, so it’s been a bit of a whirlwind around here. Yesterday, of course, we were at Duke for the better part of the day which brings us to today. So glad it’s Friday, but there’s no rest around here. Craig and I leave at 8AM for Charlotte tomorrow where my crazy husband will be running the Warrior Dash. That means a lot of cleaing… lots of prep work to leave the boys… packing for us… laundry… ya know, never a dull moment especially with an 18-month old “helper”. It’s 7:17 AM and the first load of laundry is in, sheets are being changed, items being put away from our trip yesterday and the day has definitely begun (that was in part to my sweet little one calling “Ma Ma” before 6 this morning).

So, that’s where we are. We’re both looking forward tomorrow, as my mom has McManus kid duty! Woohoo! See ya boys! Daddy and I are ready for a 28-hour respite. We hope you all have a wonderful weekend (and one where you don’t end up covered in mud!) See ya next week!

Craig, Amy, and Warren

I told myself I wasn’t going to write until I had some time to give to it, but that’s not happening this week. It’s a week FULL of appointments not only for Warren, but for everyone else. Case managers are coming, too. The calendar looks crazy. Plus, of course, we’ll be gone all day to Durham tomorrow and Craig and I are out of town Saturday overnight for the Warrior Dash. I’m trying to get my cleaning done, plus pack for 2 different trips, and you know me… leaving my kids is like getting an act through Congress. Soooo much (too much) goes into it, and I’m just feeling bombarded. So, I’m going to come back and write you a better post soon, but for now…

Warren has had a few more seizures. We won’t see any for days, and then I saw 3 this morning. CT tomorrow will maybe reveal something? I’ll pop on tomorrow night or Friday morning and let you know the results. Prayers that he doesn’t need sedation. That still makes my stomach squirm… every, single time.

Off to pack a bag for someone! I promise… more soon. Hope you all had a great weekend and Mother’s Day!

Another quick check-in. Sorry! When does anyone have time to do anything? I have 4 errands to run today in a 2-hour time frame that includes a nap in the middle. Ha! I’m running around like a crazy woman. The reason for that is because my day virtually ends today at 12:30 when the equipment guy arrives with Warren’s NEW CHAIRS!!!!!!!!!!!!!!!!!!!!!!!!! Wahoo!! Yes, they are both coming today… the new stroller and new shower chair. I can’t believe it! The poor guy is just doing terribly in the chair we have, so today is a great day for Warren! I recall 3 years ago crying over the thought of Warren getting his first “stroller”, as I refused to use the word wheelchair, and today… I’m elated! Times have changed and reality has set in, huh?

Anyway, the point of why you’re all checking in: Warren hasn’t had any of the bigger seizures in a week now. It’s great news, but also so confusing because why did he have them last week? We are heading to Duke next Thursday for a CT scan and an appointment with our neurosurgeon. Hopefully, we’ll know a bit more then. For now, he’s his usual self. Craig and I both laid with him on our bed last night and relished in all the smiles he was giving us. I grieve so much for the life he has, but we still do get some precious moments when he tells us in his own way that he’s a happy boy.

The weekend looks pretty good. Weather is gorgeous, so I’m sure we’ll get some outside time. Sunday, of course, is Mother’s Day, and my husband’s BRILLIANT idea was for the moms to meet up for lunch and get a break! Did I say brilliant? So, that’s what we’re doing. Getting a little break for Mother’s Day… sounds perfect.

We wish all of you mothers out there an amazing day full of love and blessings!

With our sincerest gratitude,

Craig, Amy and Warren

I have a lot of phone calls to make during this short nap, but I wanted to pop in and give you a quick update. We didn’t really notice any of the big seizures this weekend at all, but I did recognize some odd eye movements which I believe are related. I emailed both our neurologist and neurosurgeon this morning and got prompt responses back from both. Crazy me for trying a phone call first! Anyway, our neuro wants to increase his seizure medicine to see if maybe he is outgrowing the dose. Our neurosurgeon wants to see us sooner and go ahead and schedule us for another CT (we weren’t supposed to have another one until September). So, that appointment takes a couple of phone calls and trying to get the insurance referral for the CT can be a headache! That’s what I’m heading out to start taking care of. So, I’m not overly worried, but I do think something is happening. I mentioned those head turns before which I thought may be seizures. Now, I think they are seizures and wonder if this past week’s events have just been them intensifying which is what happened last time around… they got worse and worse over time. ?? Ugh. I can’t get the shunt thought out of my head which makes me CRINGE! But, I don’t know what’s going to happen, so I won’t dwell. Fingers crossed!

Otherwise, not too much else to report in on. We did have our photo session Sunday which was great. We won’t get the pictures for a month, but I’m hoping she got some cute shots of the boys. Landon was a complete ham in the beginning, so I can’t wait to see those! She was a super sweet photographer who has 3 boys of her own. So obvious to me when a “Mommy” comes around Warren. So often he’s overlooked and not even spoken to, but not with a Mommy… she was chatting with him just like he could understand her. So sweet! Anyway, can’t wait to share those.

The week ahead is pretty typical. We have OT today, so I’m off to hit the phones and try and get these appointments, referrals and med changes underway. Woohoo! Happy Naptime to me! Maybe for Mother’s Day, Craig will get me that secretary! Hope you all have a great week! I’ll keep you posted!

Craig, Amy, and Warren

Well, he had two more seizures yesterday morning. They were the same… nothing too intense… short… but nonetheless, present. We didn’t see any more yesterday, and he’s been good this morning so far. Neuro still hasn’t called back which I don’t find acceptable, but… seeing how it’s Friday and I really don’t feel any urgency at this point, I’m going to call back Monday. That’s where we are. Fortunately because my family rocks, it hasn’t caused us any cancellations this week. My sister watched them Wednesday and frankly said (when I offered for her to cancel due to Warren) that Landon was more difficult than Warren (so true!). They had a great night. Tonight, Craig and I have the Fur Ball. My dad and Miss Kathy are watching them, and I didn’t even offer to cancel. Why? Because my dad would have laughed it off. He has no worries taking care of my boys! So, we wait. Overall, Warren’s doing fine but doing the two steps forward, on step back thing, I guess! Have a great weekend everyone! Thanks for checking in!

Not much to report in on, but I wanted to touch base for those of you checking in. I didn’t notice any seizures yesterday which was great but still has me wondering what in the world is going on. This morning, I wasn’t sure if he was having any or not. He kept throwing his left arm out, but none of the other characteristics were there. Both Craig and I don’t think they were seizures. Warren tends to sleep all balled up in a knot, so there are mornings when it takes us quite a bit of time to get him stretched out. Those little muscles get so tight and sore. This morning was one of those, and I think his left leg was bothering him from his sleep… I think?? Every time he moved that leg, he threw that arm out… almost startled because of some discomfort. No limbs were stiffened… the head didn’t turn left… not thinking those were anything. After he’d been up for a bit, he was his perky self and doing fine. So far so good today.

No word from our Neuro yet. That’s typical. Never know where he is in his day, but it’s not urgent. I doubt he’ll want me to do much at this point anyway, since we haven’t observed more. I just wanted to let you know what was happening. I’ll keep you posted!!

Two posts in two days? Something’s gotta be up, huh? You’re right! Just to keep you in the know…

Warren had a series of seizures last night. Ugh! I had already come to the conclusion that the head turning to the left ones were definitely seizures. He had one of those waiting at the dentist yesterday which put it in stone for me. I’ve seen him have too many seizures in his short little life to not know one when I see one. But, they were just the head turning… subtle… nothing alarming. I was fine with keeping a watch on him and having the EEG in June.

However, last night around 8ish, I put him on the floor to put on his hamstring splints. The goal for those is to put him in them for longer and longer amounts of time until he’s wearing them through the night. Poor guy… they’re big, cumbersome, and a pain to get on! Anyway, as I was putting them on, I saw one. It was oddly familiar to the ones before: head left, eyes closing briefly, left arm outstretched. I immediately starting coaxing him out of it while giving Craig a heart attack, I think. He proceeded to have several more. How many? I think we were so in awe watching him that our ability to correctly judge time or number is impossible. I’d say at least 5 seizures probably in less than a 10-minute time frame? We both just sat there next to him wondering what in the hell was going on? I, of course, immediately took his splints off. When they had passed and he hadn’t had any for a while, we started deducing what could have happened. Our conclusion: WHO KNOWS??

He was tired and these splints are most certainly uncomfortable. Maybe a combination of being tired and in a bit of pain? I checked his meds, and everything was given correctly. We’re in the middle of the bottle of his seizure medication, so it’s not as if we haven’t been using that solution for a couple of weeks anyway. No new meds. No new experiences.

So, here we are as perplexed as ever! Fortunately, we didn’t panic, but we did both watch him like a hawk. When we put him to bed, I sat in his rocking chair next to his bed until he fell asleep. We left the screen monitor on all night long and every time either of rolled over, we stared at him. I asked Craig how he slept last night, and he responded that he probably checked on Warren 30 times. Warren was fast asleep all night long. I picked him up at the first sign of movement this morning, so I could watch him. Nothing out of the norm. Ah, that boy! He knows I have a nice few nights out ahead of me, and he wanted to change that. Stinker!

I have left a message for our neurologist, and for now… we just observe. I canceled PT to keep him home today and watch him. I don’t want to leave him to see if he has anymore, so I’ll be stuck in the house all day. Ugh… makes for a long day with a  17-month old. I can only get but so creative, ya know?

That’s the latest. We would appreciate your prayers, as we hopefully get this figured out. What that will entail is yet to be known.

Many thanks,

Craig, Amy, and Warren

The last day of April. Wow! That means tomorrow is May, and Craig and I will both become a year older this month. Shoot! It also means my little guy will celebrate his Half-Birthday, too! When I think of him, time is passing WAY too quickly.

This week is one of those weeks where there are a lot of extras. Most of them are good extras, but nonetheless… “extra”. To backtrack, the weekend was super busy, too! Saturday was full of errands plus taking the boys downtown to enjoy a bit of the Dogwood Festival. It was a nice time but before I knew it, it was dinnertime and the day was done. Sunday was even busier, as Craig worked in the new bathroom measuring, drilling and hanging everything for the entire morning and after lunch. I was trying to get a couple of meals cooked and get everyone bathed, fed, etc. He looked at me one time and said, “Let me know when the weekend starts.” Ha. The bathroom looks great. There’s one more towel rack to hang and a couple of pictures. The track on the ceiling for the shower liner blends in nicely, and the stark white liner isn’t too bad. It doesn’t touch the floor, though, so we’re definitely going to have to figure out how to minimize getting the floor super wet as best we can. Of course, until we get the shower chair, none of that really matters right now… in due time, in due time. We headed out in the afternoon to my nephew’s birthday party where Landon was amazed by the sights and sounds, but my Warren just passed out and slept. Perhaps from all the stimulation… perhaps from the heat… nonetheless, we didn’t hear much from him which left one of us sitting in a corner with him, as usual. That’s just how it goes, though.

Warren had a dentist appointment this morning. I think my nerves are finally settled. Ugh. I didn’t handle it that well this morning. Our dentist is wonderful with him… really, really like her. But, it’s all new to Warren, and he was tilted back which is difficult for him. I explained that, but she really wanted to try and get as good a look as possible. Anyway, he had several gags… tears rolling down his face from the gags… I kept pulling him forward and holding his hand… poor guy, had no idea what was happening. I was shaking like a leaf when we left there and told Craig… dental appointments are HIS, as my nerves just can’t handle it. Honestly, I was better than his nurse was. She was a basketcase and just stood in the corner. Ha! Neither one of us can handle seeing Warren panic in any way, so again… Craig’s up next time! Overall, though, his mouth is great. She said for a child primarily fed via G-tube, that his mouth was one of the “most beautiful” she had seen. We’ll keep doing what we do and head back there in 6 months. Pardon me, Craig will head back there in 6 months!

OT this afternoon at lunchtime. Nothing on tap tonight. Tomorrow is PT in the morning and then my sister coming over for her Tuesday night dinner date with our boys. Wednesday is a free day right now, but we do have a date night Wednesday nights compliments of my sister. Woohoo!! Chips and salsa here we come!! Thursday, I have a doctor’s appointment at 8, Warren has speech at 10:30, and then I have Book Club that night. Friday is the FAPS Fur Ball (charity event for our local animal protection society), and Craig and I are attending that compliments Grandaddy Mark and Miss Kathy. So, you see… most of the extras are in our favor, but it still makes for a super busy week.

Next weekend, we have a photographer coming over Sunday morning for a photo session. One of my friends nominated our family as one deserving of a photo session. Wow! I think she posts a picture and shares a little bit of our story on Facebook. We have never had professional pictures because we do the best we can with our own camera, as toting Warren around just didn’t justify it to us. So, I’m nervously excited. I worry about everything… will Landon behave? will the yard guys have come? will Warren spit up on his shirt before we get a good shot of him? Ha! Such a worrier. Can’t wait, though, and am just so grateful to have the friends in my life that I do. I know some amazing people!

On that note, I think I’ll go enjoy the last few minutes of naptime before rounding the troops for therapy. I have a big goal of getting some pictures up for you to see! It was one of my goals for the weekend, but you can obviously tell that didn’t work out too well. I really need to learn how to do it myself!! Fingers crossed, though! We have some great ones to share. Have a wonderful week, and thanks for checking in on my big guy!

Craig, Amy, and Warren

The best news is that Craig is on his way HOME!! Wahoo! It’s been a long few days without him. Again, I’m already telling myself: Don’t knock Landon over to get to him first when he walks through the door. LOL! We love our Daddy around here! Poor lil guy… every time he sees Craig’s truck out of the window, he thinks he’s home. Gets this super excited look and whispers Da Da Da Da. So sweet! Warren has missed his daddy, too! He can’t sit with me like he does with Craig, so I think there’s three big smiles waiting for Daddy tonight!

Let’s see… typical week. Monday’s therapy was canceled which honestly, was a nice surprise. Having to leave to make a certain a time frame sure puts a cramp in my day sometimes! It’s nothing I can change, but a little break from time to time is welcome. Today is a free day, so Warren’s had a bath… been in his stander… is getting some pureed food now… a VERY typical day. My Landon has been napping now for an hour which is not typical… but again, very welcomed. Guess I wore him out this morning as I cleaned bathrooms while he ran around wide open destroying everything in his path and then yelling, “MESS!” That kid cracks me up!

The bathroom is coming along. The first coat of paint is on and looking good. I think we’ve almost picked up everything we need once the paint is finished: door knob, towel racks, some decor. Still need the hand towels and new blinds. Our track for the shower liner has come in, and Craig picked up a new cabinet, too. Looks like this weekend is all about finishing the bathroom! I’m ready to move onto something else! Our vendor did say he thought the shower chair was only 4-6 weeks out! I can’t believe we’re going to get it that quickly, but I’m hoping so!! Hoping the new stroller is only days away… hoping! This chair we have now is just AWFUL! Warren has a bruise on his hip b/c he slides so far down it when he’s wide open… awful! The chair shouldn’t hurt the child for heaven’s sakes! Ugh. I did see part of an email that I probably wasn’t supposed to see regarding Warren’s new chair. Someone wrote that he would have contacted “the family” (being us) directly, but he didn’t want us to hound our vendor for delivery. In other words, regardless of when these companies get the equipment, they deliver it whenever they want. He said it in a generic way… not specific to us, but… just goes to show the attitudes of those we have to work with. I dare say that 99.9% of them do not go home to a child with special needs. If they did, they would realize that these parents aren’t “hounding” them because they have nothing better to do. We want what our kids NEED. Is that really so terrible? To imagine that a kiddo who’s been waiting on a piece of equipment that they really need… that that piece of equipment has been “in” for a couple of weeks before the company calls them and decides to deliver. Happens ALL the time. Guaranteed. That’s my soapbox for today. I just so wish that the people that work in this “field” could understand, but they can’t. Compassion goes a long way. Moving on…

The next couple of days are just as usual which I’ll take! My family is coming over tomorrow night for dinner, as my uncle is coming into town. What else? The bathroom will hopefully be painted, so we’ll spend a good bit of time wrapping it up! It’s Dogwood Festival weekend, but I’m not sure if we’ll get downtown for any of the festivities or not. Maybe so. There are also the last soccer games of the season for my niece and nephew along with my nephew’s 7th birthday party Sunday afternoon. Whew!! Seems like we have a little bit to do, huh? Monday will roll around all too quickly, so for now… I choose to enjoy this Wednesday and the fact that my boy is coming home tonight!!

Time to draw the afternoon meds! Have a great one, folks!!

Craig, Amy, and Warren

Happy Birthday to our first born. Wow! 5 years old!! Where does the time go? I said to him this morning as I carried him out of his room after Landon and I sang to him, “5 years ago right now… I had been in the hospital for 12 hours waiting for you, and you STILL didn’t want out… it would be another 12 hours before we would meet you, but man… had I known what you were facing, I would have let you stay in my belly for as long as you wanted!” 9 lbs and 7 oz of love has turned into almost 4 feet and 45 pounds of sugar!

I’ll be honest and say it’s a bitter sweet day. We certainly celebrate the fact that we’ve had Warren for five years! But, can I cook him his favorite dinner tonight? Take him to his favorite place? Buy him the toy he’s been wanting? Nope. None of that applies to Warren, so it’s really just a typical day. Sad, but true. Regardless of how ho hum I can let myself think about it, it’s still a wonderful celebration that we’ve had Warren for 5 amazing years. What a long way he’s come, baby!

Otherwise, our week has been pretty typical, too. We did have a great weekend walking in the March of Dimes walk. The boys did great, and both fell asleep along the last half of the journey. It was so cute! Unfortunately, I think so much outside time maybe flared up Warren’s allergies? It’s a guess, as is most everything else in his life. But, later that afternoon, he was just miserable. Starting getting pale… sleeping a lot… and finally lost his dinner all over my carpet Saturday night. Wahoo! I was trying to get the rugrat fed who can be demanding and just happened to look over at Warren. I couldn’t hear the noises, but I saw his face and KNEW. I ran for the bucket which was behind a doggone safety latch on the cabinet. So, I literally popped it in half (which gave Craig a good laugh later), grabbed the bucket, but I was too late. Me, the carpet, the stroller… we were all done for. So, I started my Saturday night with my beloved carpet cleaner and a clothes change. Oh well, all in a day around here. He woke up fine Sunday morning. Crazy kid! I spoke w/ his pediatrician just to make sure there wouldn’t be any drug interactions, but I’m going to pick up some allergy meds to have on hand for any upcoming outside time. I hope that’s the right guess!

What else? It was a busy week as I continue to spring clean out everything! Our Rec Room looks like a garbage dump with all of the trash bags awaiting their new home at Goodwill this weekend. Woohoo! I LOVE to clean out closets and drawers! Not too many plans ahead for the weekend. Looks like a bit of a rainy one around here, at least. We usually make a list Friday night for the weekend “honey-dos” and that can tend to grow longer and longer as the weekend actually is upon us. A commissary run is somewhere in the mix, and that’s about all. I think Craig may have some traveling next week, so I’ll be mentally preparing myself to juggle the boys solo. I don’t look forward to a break in our routine, but we’ll manage. Always better when Daddy’s here, though… always!

We hope your week has started off great and that the best is yet to come! Thanks for checking in on our birthday boy!!

Love,

Craig, Amy, and Warren