Tuesday, December 29, 2009
Most college engineering students take this exam around the same time as they graduate with their bachelors degree. For whatever reason at the time (out late the night before, perhaps?), Nate opted not to take it back in 1999. Over the past couple of years, it has become obvious to us that it would be a good career move for Nate to get his EI and ultimately his PE. So he started studying for the EI exam and took it the first time in April of this year. Though he didn't pass in April, the actual test taking experience was good for him, and he studied through the summer to prepare for the October test.
The late nights studying, skipping PlayStation evenings (sorry Chris), internal drive , and sacrifice of this daddy of two and a half really paid off! The boys and I are so proud of you "Daddy, EI"!!!
Sunday, December 27, 2009
Here are some of this year's photos, a little late but better than never! We hope that you had a wonderful holiday and enjoyed some special times with your families.
Sunday, December 20, 2009
The illness that started early last week still isn't gone. Luke seems to have been hit the hardest, followed closely by Nate, and Will has a touch of it too. I seem to have been passed over by this illness, which is good on several fronts. Someone's got to take care of the troops, plus it isn't ever fun to be sick while you're pregnant!
We thought at first this was a simple cough that was going to pass in a couple of days. A fever soon followed. After 3 trips to the doctor, Luke is now the proud owner of a nebulizer, to deliver medicine deep into his lungs. He's also on an antibiotic and an oral steroid. Some of the side effects of being a preemie is coming back to haunt him...
Luke was on oxygen the longest in the NICU. Probably more than 30 days between the respirator, CPAP and nasal cannula. Will was off of oxygen a lot faster. The doctor on Saturday told us that if a child is on oxygen for longer than 30 days, they are much more susceptible to lung viruses and infections. The boys have both received Synagis over the past two cold and flu seasons, which protected their lungs from these types of viruses. Now that they are nearing 3 years old, they aren't getting Synagis anymore... so this is our first winter of potential lung issues.
Luke spent Saturday on the couch, sleeping almost all of the day. It was so different from our typical Luke. Nate didn't feel much better. Will was attempting to be his normal self but the coughing kept getting in the way.
Thankfully today, the nebulizer seems to have helped Luke out quite a bit, and the virus appears to be nearing its end in Nate and Will. We're still taking it easy, not really moving from our protective cocoon in the living room. We have watched a lot of Elmo, the Incredibles and Cars too... thankfully there's football on today to break up the cartoon monotony!
Here is a photo of Luke with his beloved nebulizer. For a kid who has fought us tooth and nail when its time to take medicine by mouth, he doesn't mind holding the nebulizer for the full 10 minutes that it takes to deliver his dose! We were holding it a little away from his face the first couple of doses, but now he's happy to hold it himself, right up to his face. Its like he knows that it is helping him, and is very cute.
Tuesday, December 15, 2009
I know some day we'll look back on these times and laugh... but for now, we're all a little cranky and tired!
Monday, December 7, 2009
Friday, November 27, 2009
Luke's infinite sense of daredevil-ness
Will's drive to communicate and vocalize
Luke's ability to go, go, go... and then sleep!
Sunday, November 22, 2009
We headed home on Sunday - the full drive in one day! Without any stops, the drive takes 9 hours. But with the boys, we stopped every three hours to get out of the car seats, stretch legs, change diapers, eat, etc. The first time we stopped was back in Harrisburg, at a local mall. Will was very happy to be held for a while. Luke only had eyes for the escalator, and threw a full sized temper tantrum when we had to leave. The second stop was at Cracker Barrel somewhere in central Virginia. The boys did amazingly well there, and we hit the road for the last 3 hours. We were all happy to see our house at the end of the journey!
Thursday, November 19, 2009
Yes, that's right... I said HIM.
Cart is a boy! Just call Nate "Fred MacMurray" because its going to be like My Three Sons around here in the next couple of months! Sorry if you're so shocked and looking for photographic proof, but I'm not going to embarass Cart in advance of his birth by showing a photo of his little baby boy parts on the internet!
Tuesday, November 17, 2009
In between being really sick, we've traveled to New York to help celebrate Papa Joe's 60th birthday, spent a fun afternoon with friends at the pumpkin patch, traveled to Florida for a Loss family wedding, tried our best to celebrate Halloween, and just got back from a weekend at a cabin with friends in western Virginia. I will do my best to post some pictures of all of our adventures in the next couple of days.
The boys are both doing remarkably well in preschool. Will's face lights up every morning when I tell him we're going to see Ms. Tasha (his teacher). He gets even happier when we walk into the room and hears her voice. His appetite is finally starting to pick up again after being sick. He lost 2 pounds while he was sick, and had to miss a full week of school because he had a fever that would not quit last week. We're working hard to put those pounds back onto him! Dropping Luke off in the morning has gotten a lot easier since he's been feeling better. Each morning, he's so excited to see his teacher, wash his hands, and cut paper. It is certainly making our mornings a lot easier to drop off happy boys at school!
This week, I hit the 18th week of my pregnancy. I've been feeling pretty good and actually (finally) felt Cart kick for the first time today. Apparently Cart likes cheeseburgers from Red Robin. On Thursday, we have our 18 week ultrasound, and we'll be sure to pass along Cart's gender at that time! Just don't expect us to divulge his/her name any time before his/her arrival in April.
Nate has been giving me progesterone shots in the behind every week for the past 4 weeks. He's been doing well and - dare I say - looking forward to administering the shot every week!
Its been a long couple of weeks for us here... but hopefully things calm down a little bit before the holidays!
Thursday, October 15, 2009
Really? What could possibly be more nervewracking right now???
They eventually wheeled in an ultrasound machine, and were able to find Cart and the heartbeat immediately. Thank goodness! Everything looks good and heartbeat is strong.
During the ultrasound, Cart gave us a good profile shot and a little wave. Super cute hiccups too! At one point, Cart rotates a little bit and gives us a full face shot. We can see the mouth opening and closing like a fish.
Nate says very matter of factly "Perhaps we should be calling her Carp instead."
Monday, October 12, 2009
So now, in honor of Grandma Jean's naming scheme, we are honored and excited to announce the impending arrival of Baby "Cart." Yes, thats right, we're pregnant! Our due date is April 23, 2010. And its definitely a single baby this time. We've made them check multiple times.
You might have deduced from reading our blog that our life often borders on hectic. And yes, bringing another baby home is sure to increase the hecticism... but we always thought we'd have more than two children, and this time works out well for all of us. We couldn't be happier!
In hopes of reducing our liklihood of having a premature child, I've been put on strict orders to take it easy... hmm... not so easy with two toddlers around the house! But I am doing my best not to lift heavy things, take it slower while walking, and laying down whenever I can. Nate is doing a great job of being a partial single parent! In a couple of weeks, Nate will start administering weekly progesterone shots in my arse... something he is looking forward to much more than I am. Research has shown that progesterone can decrease the liklihood of premature delivery in women with a history of premature delivery. So between the rest, the progesterone and the single child, we're really hopeful for a full term child this time around! We feel like between us and our maternal fetal medicine specialist, we're doing everything possible to mitigate the risks.
Our plan is to find out Cart's gender the week before Thanksgiving, but will again be keeping Cart's official name a secret until his or her (full term!!!) arrival in April. I think we're destined to have three boys, Nate keeps calling Cart "sister" so we shall have to wait and see!
Good thing we aren't planning on having 6 kids... using this naming scheme, that could be cruel. A, B, C, D, E... something about Baby "Fart" just doesn't sound too cute and cuddly. It kind of starts life out on the wrong gassy foot.
Sunday, September 13, 2009
We spent a wonderful weekend at the Outer Banks. We visited a lighthouse and enjoyed the beach. We rented a condo, and lucky Otis was able to come with us. The weather was perfect, and we truly had a great weekend away. Very peaceful.
With everything that we have going on these days, its easy to forget to find peace in our own family. Every now and again, its good to have a weekend where you can just sit back and watch the waves.
Thursday, September 10, 2009
So you know what that means, right? Time to start Will on preschool! Hopefully not to repeat the whole "two weeks of drama" thing, but we were prepared to fight that fight if necessary.
On Will's first day, he went for a half day with Oma. She was there to show the new teachers the "Will ropes" and to help out with the transition. While we want Will to go to school with typically developing kids and do as many of the "normal" preschool things as possible, we know that he has a lot of things that make him special and need some additional focus.
Our main concerns are feeding, positioning, and the timing of his dosage of afternoon Neurontin (medicine) that is administered through his g-tube. His school has about one third special needs children, but that can mean so many things. We know there have been other children with cerebral palsy there before, but also many other disabilities too. So we spent some extra time with the teachers, walking through training for all of the focus areas that we have for Will.
The first day was a little rough - as expected. Will doesn't eat well for new people, and because so many of the other children in his class are also in transition, it is noisy at times with crying and upset kids. He did truly enjoy outside time with his classmates, as you can see in the photos below! Will came home to nap that day.
On day two, we had kind of a repeat of the first day. Oma walked them through Will's Kid Kart, stander, feet DAFOs, and his new hand positioning "mitts" (http://www.benik.com/peds/wrist/bd-88). Again, though, difficulty with feeding. We were a little worried, with everything that we've been through with his weight and the vomiting and the failure to thrive... but kept up hope that Will would warm up to everyone and his teachers would keep trying to feed him.
Today was Will's first day alone (Oma and Opa hit the road on their return to Texas this morning). Luke and I dropped Will off a little early so that we could walk the teachers through how to administer Will's Neurontin. We talked about our goals for Will's feeds, and told them that we have confidence that things will work out if everyone keeps working at it!
I am happy to report that Will had an absolutely fabulous day today! He ate relatively well for his teachers - while not exactly reaching his daily goal its a step in the right direction because he wouldn't eat for them at all on Tuesday and Wednesday of this week. He enjoyed outside time and art time quite a bit. And get this... he actually napped while he was there! Will - who needs music and a noise machine and perfect quiet and a pillow and a specially placed pacifier when he sleeps at home - went to sleep on a mat on the floor surrounded by 8 other not-perfectly-quiet kids in a brand new place. He was all smiles when Nate picked him up and has been in a good mood all evening.
Wow. We are so happy with today, it by far exceeded our expectations! Will did so well in his new environment. We hoped that he would enjoy preschool, but were nervous because he's really seemed to enjoy his situation at home. We couldn't be prouder of him for doing so well! Now let's hope he continues on this wonderful path!
Thursday, September 3, 2009
So, I thought, he's manipulating me...
On Tuesday, he again cried while we were getting out of the car. I didn't carry him this time, because he's fully capable of walking into preschool. He kept asking for "up" and I kept trying to get him to walk with me. He was angry with me, and right there in the middle of the parking lot, dropped to his knees and smacked his head on pavement (on purpose). With a nice prickly welt on his head, he proceeded to walk into preschool, screaming the whole way. Dramatic, mommy-embarassing entrance on the day I originally thought was school picture day (thankfully I was a week off...)!
Wednesday morning was a little worse. Luke pulled the whole "tantrum in the parking lot" thing again, only this time he forewent the head slam and skinned both his knees instead. I made sure he was safely to the side walk and walked away from him. I was mad! He refused to go inside, so I carried him football style into the classroom and dropped him gently onto the reading mat. I probably could have handled myself in a more adult manner, but he was being such a............. two year old! Definitely a parental test for me.
I was determined not to let Luke beat me... I mean, manipulate me again this morning. I devised a distraction plan. I parked closer to the school so we didn't have too much parking lot to cross. I also arranged to call Nate at work as we were going into school. Luke and Daddy talked as Luke calmly walked with me into school. No tantrum, no blood, nothing but a behaving Luke!
When we got into the class, we hung up with Daddy and Luke got a little trembly lip. We walked over to the reading mat and read an Elmo book together, and he pulled out a different book to read on his own. I stood up to leave, and he followed me to the door. The lip started trembling again, but he gave me a hug and we said goodbye. As I was peeking back through the door, he spotted me and I blew him a kiss. He blew one back, waved bye bye, and then walked off to go play with one of his friends.
Successful toddler manipulation? Let's hope this continues on this way, because it certainly made the morning a lot easier for both Luke and me! So, I'll be taking volunteers for us to call every morning. Anyone who is interested in receiving a roughly 2-minute phone call sometime in between 8:00 and 8:15 on a weekday morning, let me know where we should call you! Luke might not talk to you all that much, but I'll silently be mouthing "thank you" as you ask him how he's doing, and he gets into his classroom without the toddler tantrum drama!
Monday, August 31, 2009
On day 1, I stayed with Luke for a little while to get him comfortable with his class. He was doing fine when he thought that I was staying the whole time like I had the Friday prior! When he realized I was leaving, he threw a conniption fit... I tried to calm him but it wasn't until breakfast arrived that he was truly ready to forget I was there. We had him stay half a day on that first day, and he was definitely ready for us to pick him up at noon. He had been perfectly content eating his lunch until he saw Nate and me... at which time he stood up, hands straight down, mouth wide open, just crying. He was so overwhelmed. We felt bad, but got him calmed down and went home for nap.
The second day, we timed our arrival perfectly so that we arrived at the same time as breakfast. Luke was happily distracted and I was able to leave without a lot of drama. We did half day for the second day too, but much less drama on the pick up at noon. Luke's teacher told us that he had laid down on someone else's cot earlier so we figured the next day, he'd be ready to take his nap there.
On Wednesday morning, the drop off drama started again. Everyone told me that the first two weeks were the toughest, but I thought that based on minimal drama the day before, we could magically move on to easy drop off. No such luck. Luke did not want me to let him go. We tried playing Legos, blocks, puppets... anything! But breakfast was a little late, and I had to go to work. I left the classroom after many hugs and kisses, and watched through the one-way glass window from the hall as he paced the room looking for me and tried to get out the door. Ugh. It seriously tears at your heart. Eventually he calmed down and enjoyed an Elmo book. Thankfully Luke took his nap easily there too, and did very well in the afternoon.
Thursday morning was the same as Wednesday, and I stopped in at lunch time to see how Luke did. His teacher was excited to report that he had a great morning, went down for nap easily, and had used the potty twice.
Luke? Our Luke? Used the potty? He's never done that at home! The preschool kids get to ring a bell after they successfully use the potty, and everyone in the class stops and cheers whenever they hear the bell. Anyone who knows Luke knows that he loves to cheer for himself, so I think he thought he was missing out by not being able to ring that bell. So we're keeping the whole bell thing going at home now, in hopes that we can jump start potty training.
On Friday, Luke's occupational therapist went to visit at preschool for his first session there, and was happy to report that he was having a great time and seemed well adjusted. They worked on getting him more comfortable and independent on the playground, and Luke's teacher said that he did remarkably well today on the playground during outside time.
Let's hope that the two week rule holds true with Luke and preschool, because today was another rough morning, though I am thinking that perhaps I am sticking around too long... maybe preschool drop off is like removing a band aid.
Anyway, as soon as we get through this Luke two week period, we start Will at his preschool... oh, good times!
Sunday, August 23, 2009
So, we'd been talking with Luke all week about his trip to school on Friday to meet his teacher. I don't think that the word 'school' really meant anything to him, but 'teacher' certainly did... from third-to-last page of Brown Bear, Brown Bear! So every time I'd say to him that we were going to school, he'd remind me that we were going to see a "teacher, teacher," ha!
Anyway, we woke up and got ready like normal on Friday, and drove to Luke's school just in time for them to wrap up breakfast and start some play time. He was clearly nervous as we walked through the door... lots of new people (he didn't say "hi" to anyone, which told me he was a little overwhelmed). When we got into his classroom, he immediately turned around and wanted me to pick him up. I did, and we introduced him around. There were some familiar things in the room, such as a chalkboard, a sand table, and a sink with a faucet that Luke could reach, so he quickly became enthralled with those. Every couple of minutes, he'd look over his shoulder to make sure I was still there. He was moderately interested in the other children there, but really more interested in the bathroom and opening the classroom door! I am sure with time, this will pass.
He got a little confused and frustrated at one point because the classroom rules only allow two children at each play station (there are pairs of footprints at the sand table, for instance, to show how many kids can be there at a time). I am pretty sure they do this to avoid overcrowding and fighting between the kids, but even as a nice little girl tried to point out to Luke that he was the third person at the sand table, he didn't get it. And then he got mad when the teacher made him walk away and find another station to play at. Eventually he made his way to the creative play area, and sampled a plastic tomato.
Mid-morning, we went outside to the playground. As much as we've tried to get Luke to love the playground, he just doesn't. I am not sure if he gets scared or isn't sure of his footing, but whatever it is, he tends to stay close whenever we take him. He started out that way on Friday (he even threw a temper tantrum and tried to get back into the school), but with all the kids squealing and laughing as they went down the slide, his interest was definitely piqued. He climbed up and went down the slide once, which I considered a huge success because I wasn't the one convincing him to go up the slide, nor did he need me to ride down with him.
We went to another section of the playground later, and the teacher set up two water tables. Luke was in pure heaven, and didn't need me around anymore after the water table came out. I would stand farther away as he would splash more and more water across his increasingly large smile. He was soaked to the bone, and happy as could be. It definitely made me happy to see that.
After the water table was lunch time. Luke sat at the table with his new friends all by himself - a total surprise to me since he still sits in a high chair at home. He told his teacher "thank you" when she spooned his lunch onto his plate, asked for a fork instead of a spoon to eat with, and ate his noodles and applesauce well. Then he even cleared off his plate into the garbage when he was done! Amazing :)
We got ready to leave after lunch because the kids in the classroom were going down for a nap. Luke was definitely ready to go at that point - it was a busy morning! I ran out to the car to get Luke's supplies for Monday to put into his cubby, and he noticed that I was gone. He didn't cry, but he was clearly happy when I came back into the room. So Monday and Tuesday of next week, the plan is to have Luke go part time on his own... and then try full time on Wednesday. Hopefully that will help ease him into preschool and give him a little more comfort and independence.
The night before Luke's first day of preschool was his last day at the Little Gym. At the end of the last session in May, they had a medal ceremony for all the kids. We didn't know that was going to happen, so we weren't prepared with a camera. Determined to experience this medal ceremony as a family, we packed everyone into the car to congratulate Luke on completing another session of his Beasts class. For the first time ever, we took Will with us out onto the tumbling floor - typically one of us takes Luke to class and the other stays home to work with Will and make dinner.
Will had an absolute blast! He especially loved rolling down the big blue wedge and bouncing along with Oma to the songs that the teacher was singing! It was a totally fun, totally unexpectedly great evening for us! Even when we found out that they weren't doing a medal ceremony this time!
Our third experiment was this entire weekend, we went back to the beach. We left Friday night, to ensure that we'd have a place for the boys to nap at their normal nap time on Saturday (we learned from our mistakes last time). On Saturday morning, we went to the beach. Because Hurricane Bill was blowing through the Atlantic, we didn't go into the ocean much beyond our ankles because of the warnings of rip currents. Will again proved that he didn't like the ocean, however, and spent most of the time huddled with me under the sun shade while Nate and Luke spent some time in the water.
Saturday afternoon, we drove down to Fort Fisher and walked around there a little bit, and then headed up to Wilmington to stop at our favorite ice cream place, Kilwin's. Yum! We made it back to the hotel in time to get a short swim at the pool (even shorter for Luke, who is NOT a fan of getting his face wet) before the boys went to bed.
This morning (Sunday) started off a little rough, but we were kind of prepared for that! All we had to do was pack up the car and hit the road. Quick 2 hour drive home, just in time for naps. Ahh, this trip went like 1000000000000 times better than the last one!
I am sure there will be many other experiences and experiments to write about in the coming weeks! Be sure to check back!
Wednesday, August 19, 2009
While I am excited about the prospect of preschool and the fun that the boys will have, I also realize that this is a huge change for us! The boys have been cared for in the home since they were brought home from the NICU... lovely one on two care. But now, they're moving up!
I also realized that this will be the first time ever that they will spend all day, every day apart from each other. They've spent a day here and there apart before (because of hospitalizations), but never anything as permanent as this! And again, while I believe this will be a good thing (especially for Will, who really seems to come out of his shell when Luke isn't around - not in a bad way - its just that Luke is the more aggressive twin, and Will does a lot of listening when he's around), its sort of sad. I know that we'll all really treasure nights and weekends when we're all home and together.
Another big change is that Oma is about to head back home to Texas. Can you believe that a year has already passed since she came to NC to help us out? It has been a great help to have her here, but now that Opa is back safely from Iraq, the time has come. Will gets to spend a few extra days of one on one time with her in between Monday and Labor Day, but once he goes to preschool, Oma and Opa hop in the car! While we will all miss her, I think Luke might miss her the most. He really enjoys banging on her door and waking her up in the morning, and I think he finds some sense of relief in knowing that she's just down the hall from him (if he ever needs a computer to mess up or a tube of lotion to empty onto his head). So it will be a lot of changes all at once.
Bear with us as we enter this transition time! Blog entries might be a bit more stretched out, and phone calls might be tough to answer, but I know eventually we'll find a new groove!
Thursday, August 13, 2009
Thursday, August 6, 2009
Today we went back to Will's CP clinic for our quarterly check in. The doc is the one who ultimately helped us decide on Will receiving his surgical g-tube. Always a good time, good informative conversation (he reads our blog!), and he is always very complimentary. Usually I leave the appointment with teary eyes, though, because he's said something so nice or so "to the point" about the difficulties of raising a child with special needs that I can't keep my composure.
Anyway, today we learned that Will has gained three pounds since his surgery... let me reiterate. THREE POUNDS. In less than 3 months. Way to go Will! Will hadn't gained a single pound in the 6 months leading up to his g-tube placement. Since we've figured out all the kinks, this g-tube has been a very good thing for him.
Here's the ironic part: if Will continues on this pattern of weight gain, by the next time we go to the CP clinic, Will with be OVERWEIGHT. What?!?! I guess he'll be considered "overweight" from a "child with CP perspective" - his ideal weight is right around the 35th percentile on the growth chart. But still. Its just ironical. He was startlingly underweight just 4 months ago.
This by no means implies that Will no longer needs his g-tube. In order for his g-tube to come out, Will will need to demonstrate that he can take all of his calories by mouth and continue to gain weight. Right now, he's taking a little more than half his feeds by mouth, and the rest of the calories he gets via the g-tube and pump overnight.
But for now, rather than worry about when the g-tube can go away, we relish in the weight gain. And pinch the chubbier cheeks and slightly rolly-polly legs. A lot. But not in a mean or painful way.
Sunday, August 2, 2009
I wanted to write you a letter to thank you for the awesome duck step stool that you made for me, but seeing that I am still working on drawing circles and lines, a letter was out of the question. Thanks to my mom for transcribing this blog entry for me! I am still working on my vocabulary, but I think you'll find that I have a remarkable understanding and usage of the English language for my age.
I absolutely love the step stool. It is amazing how much of the world I was missing out on prior to its arrival. Did you know that my parents were hiding things on the kitchen counter? Now I can reach them! Telephones, computers, dog treats, silver ware, glass ware... I have never seen my parents run so quickly as they did when I almost got my hand on the knife block! They learned quickly, though, and took the stool out of the kitchen. Here's a picture of me when I was first getting used to the stool.
After the kitchen debacle (good word for a two year old, huh?), my mom moved the duck step stool to the hallway so that I could reach the hall light switch. I love light switches! I guess I was annoying every one by turning on and off the light about 800 times an hour, so they moved the stool again. Here is a picture of me and my favorite light switch before they moved the stool.
For a couple of hours, I was unable to find the step stool. But then my dad emerged from my and Will's room with a surprise for us. He had converted our cribs into toddler beds! And there was my duck step stool! It was right beside my bed, so that I could have the freedom to crawl into and out of my new bed as I please. When will my parents learn?
Last night was my first time sleeping in my new bed. I used the step stool to get into my bed, then I grabbed my own pacifier and blanket, laid myself down and said "good night" to everyone. I am getting to be a big guy!
I guess my parents don't completely trust me, though, because they closed all the doors to the bathrooms in the house, and put child locks on them so I couldn't get in. I thought maybe they wouldn't remember to do this, and since I get up before everyone else, I thought I might be able to get a good couple of flushes in before someone woke up and stopped me. No such luck though. They even went so far as to put a gate across the top of the steps so I could not get downstairs and play an Elmo DVD. Bummer!
For now, the stool is going to stay next to my bed. Maybe when I get old enough to brush my teeth, my parents will move it to the bathroom. I think they know that if they put it in front of the sink now, I'd play with the faucets until I flooded the bathroom. Mommy said that no one wants that to happen, but who is she kidding? I sure do!!
I really appreciate all of the love that you put into the duck step stool. I couldn't ask for a better great grandpa! I can't wait to see you in October.
Your favorite brown-haired great grandson,
PS - Here are some pictures of me getting into my bed and putting myself to sleep.
Thursday, July 30, 2009
"Reverend Mother always says when the Lord closes a door, somewhere he opens a window" (Maria to Captain Von Trapp - look it up!)
After our most recent reject from (what I thought was our last hope for getting Will into) a daycare, I sort of launched into Super Mom mode... there had to be a solution! Thanks, Aunt Heidi, for all your words of Hallmark wisdom, too... it helped!
I used my resources on Facebook to ask around about some of our NICU nurses, special educators, laid off friends, etc to see if they would be willing and able to care for Will for 6 months. I called special ed care centers that don't take children until they are 3 years old to see if they could break their policies for us. I even called and emailed all of the day care centers that had rejected us, to see if we could come up with a creative solution. No stone left unturned, no pride, no qualms.
The last center I contacted was the one that told me weeks ago that that they had 40 kids Will's age on the waiting list ahead of us. I went straight to the director. Left her a long drawn out, honest, raw (did I say long?) message chronicling where we'd been, what I had done, what we were looking for, and asking if we could come up with some creative solution.
I didn't know if I'd get a call back, I probably sounded a little desperate and scary in my message.
But she called me back that night. Baby crying in the background. Had I appealed to her mommy side? Anyway, she said she thought we might be able to come up with something, that she'd pull Will's file in the morning and call me back.
And she did. She said that she had to double check, but she thought they had one special needs slot open in the toddler classroom (which typically kids age-out of when they hit 2 and a half). Did I mind if we put Will in a classroom that was slightly below his age group? We do not mind. Will's never been in a day care center before, so this is going to be new and scary for him... in addition, his latest developmental test showed that he was between 9 months and 1 year in development. This could work out really well, I told her.
I told her all of Will's medical history, his various therapists and doctor appointments, all of his equipment, the g-tube... and she remained unfazed. And then she said it.
"We can help you."
I almost cried. The assistant director called me back later in the day to tell me that Will's name was on the list for the toddler classroom, and that I'd need to stop by to drop off a $75 registration deposit and pick up some paperwork. In my mind, I can't do that soon enough!! I am so nervous about it falling through like some of our other plans!!
So Will starts in his 5 star, inclusive day care (meaning it is typically developing kids and special needs kids together) on September 8. Oma leaves on September 10, so this is perfect!
Just unbelievable... I am kind of still in shock. This is a long time coming, and a more perfect solution than we could have hoped for!! I did want to specially thank LHH for being interested in being Will's care provider in the case that this didn't work out... we all really appreciate it!
Tuesday, July 28, 2009
Thursday, July 23, 2009
Wednesday, July 22, 2009
Of all the doctor appointments that we go to, the ophthalmology appointments seem to take the longest because you have to wait for the eyes to dilate in between exams. Will did pretty well though, he continues to show visual acuity improvements... and although his vision is not "normal," he continues to improve. Yay!
Will's cortical visual impairment is still considered to be "mild" and his near-sightedness has not gotten worse since the last time they dilated his eyes a year ago. I had thought we might come out of this appointment with glasses to correct for Will's near-sightedness, but I think this before every eye appointment and we always come home without them. They did note that Will has an astigmatism in both eyes... thanks Grandpa Harry! Just kidding.
Will does have intermittent eye misalignment. While he is looking at something with both of his eyes, sometimes his right eye wanders a little bit. The doctor told me today that because Will's eye moves all over the place, surgery isn't a good option for him. If his eye was permanently misaligned, they could do surgery to shorten the muscle that holds the eye in place to correct it. But because Will's moves, surgery would have no benefit. The fact of the matter is that Will has a muscle control disorder, and it takes muscle control to keep your eyes straight!!
So we left the appointment with a clean bill of eye health, no surgery date, and a follow up appointment in January 2010. I'll take it! Below is a picture of Will hanging out this morning, waiting for his eyes to dilate... so patient!
Tuesday, July 21, 2009
Here's a video of Will playing a game with Nate, putting plastic beads into a bucket. Will really enjoys this game, especially the sounds that it makes.
He also enjoys messing up the games, just to get a reaction. He clearly knows that he is letting go of the bead before it gets into the bucket, and just look at that reaction!!
Luke loves drinking out of big cups, not sippie cups. So here he is with a cup full of ice... he would crack up when the ice would hit him in the face. And kept going back for more!
Wednesday, July 15, 2009
We still have no day care placement for Will in September. Nate and I took a tour last week of another day care center that specializes in inclusion of children with special needs with "normally" developing children. You may recall that we have been sent away from two centers, and the third told us that they don't have openings right now. We've only been able to find 4 centers within about 30 miles of our house that even say that they will take children with special needs... and even then, some times they say that Will's needs are just too special.
The tour last week went well. They told us they'd have an answer for us by (last) Friday. They took Will's development plan to review and to ensure that they could meet his needs. They wanted to talk with their nurse, the director, and a handful of other folks. But Friday came and went without a call.
I wasn't able to get in touch with anyone at the center until this morning. She told me that they are "50/50" on their decision to accept Will into their program. They'd "love to have him" but just aren't sure - in the current economy - if they can maintain their ratios while caring properly for Will with their current "recession-sized" staff. Ugh. She had a couple of other people to talk with, and again promised to call on (this coming) Friday.
I know that parenting is all about patience. But damn. I'm tired of waiting.
Wednesday, July 8, 2009
So after exhausting all of our options with the surgical team (we didn't really want more surgery for Will), we turned to our trusty CP clinic doctor... perhaps a saint without wings, or at least at this point, a saving grace with lots of options and a prescription pad. I described what was happening with Will, and he immediately starting tossing out ideas for things we could try. He recommended stomach emptying studies (perhaps Will's stomach isn't ready for all of this extra food and is over full?), hypoallergenic formula (perhaps Will has slowly become intolerant of Pediasure?), and then he said perhaps the g-tube surgery actually caused stomach hypersensitivity (also known as gastric hyperesthesia).
Gastric hyperesthesia can cause both stomach contact and content sensitivity. It could cause the stomach to become less tolerant of food it had always had (Will had this). It could cause stomach pain which would keep someone from being happy and sleeping (Will had this). And it could cause the stomach to retch when the belly was barely touched (Will had this too).
Angel Doctor recommended that we try a drug called neurontin to counteract the stomach sensitivity. If you look up neurontin, you will see that it is primarily used as a drug to stop seizures. Will does not have seizures. It can also be used to treat adult's pain from shingles. Will doesn't have shingles either. If you look at one of the last things that neurontin is used to treat, you'll see the words "neuropathic pain." This is what Will's stomach sensitivity is caused by - pain caused by damage to the nervous system. It could be temporary, it could be longer... we just don't know.
In a funny sort of way, when you look at the side effects of neurontin, the two main ones that affect people are sleepiness and increased weight gain. Umm... hello? Miracle drug? I say that in jest of course, because there are other serious potential side effects such as tremors and decreased muscle tone, but Will's dosage is so small that we do not expect to see these.
Will has been on neurontin for almost a week. In that time, he has slept through the night every night. He is keeping every feed down and reached his calorie goal yesterday for the first time since his surgery. He is burping easily and often. He is happy. He is napping well. He has only gagged a handful of times, and has only spit up (not even vomitted) three times in a week. Most of these occurred right around the time his neurontin dose was wearing off. Prior to the neurontin, we were up to at least three full vomits per day.
Needless to say, this is the answer to a lot of prayers. All we wanted from this surgery was for Will to thrive. And we finally feel as though we've got the bag of tools we need to make that happen.
Things just can't stay quiet for too long around here though. Today, Luke and Oma took a tumble on the front walk way. Luke hit his head very hard on the concrete. Though there was no blood, we didn't take any chances and went to the UNC ER. They did a CT, which revealed a small bleed inside Luke's brain. They did a number of blood and neurologic tests over our 7 hours there, and determined that Luke's bleed was not getting any worse (his body was able to stop the bleeding) and he didn't have any neurologic deficits. We came home with strict instructions for things to watch for (typical head injury things like lethargy, vomiting, etc) and a very sore little boy. But he is in good spirits, hungry, showing off... back to being Luke.
Friday, June 26, 2009
Back in February, Nate and I took a tour of the most recommended special needs day care program in our county. It was ok, and we put Will on the waiting list for September, when Oma goes back to Texas. We were told at that time that placing him would be no trouble, and after all, we were on the waiting list.
In the past month, Will and I took a tour of another center, just to test the day care waters. The center we toured told us that they couldn't be sure they had a spot for him, but things looked promising and they didn't see his needs as being a show stopper. They asked for a month to work things out. That month ended yesterday.
True to my typical form, I called them on the planned day. In the nicest way possible, the contact person told me that after convening, they had determined that they could not handle Will's needs. Bummer, I thought to myself, I liked this center better, but its ok. We're still good to go with the first center from back in February.
So I called to make sure. Good thing, too. All of a sudden, they are full with no potential openings in September. The waiting list doesn't matter. But "they'd call me tomorrow if anything opened up." Super (sarcastic)! I can totally sit back here and wait with no placement for my son, while you figure out if you can honor your commitments. No thanks.
I enlisted the help of our service coordinator and found out that there are two other special needs pre-schools in the county. I called the first, explained our situation. They almost laughed at me, and told me that they had a 40 kid waiting list.
We have one last hope, and have a visit with Will next week. They have to first determine if they can appropriately meet Will's needs. If they can, it appears as though we have a good placement. If they can't, we don't have any day care options for him.
We really want to put the boys in a day care program in September. They'll be 2 and a half then, having been nurtured and cared for in the home by two lovely women since birth. Its time to be socialized with other kids, start structured learning, etc. Our plan is to put the boys in two separate centers, since it really seems as though Will is more outgoing and talkative when Luke isn't around. Luke should be fine anywhere, and there are a lot more options for placement for him.
I guess if worse comes to worse, we can find someone to come into the home and care for the boys (or just Will) when Oma leaves. Will will be accepted into the county's special needs pre-school at the age of 3, in March 2010, anyway and would go to the local elementary school for full day pre-school. But I was hoping to give him a little time to get used to a different environment, by warming him up in a day care environment. Wish us luck next week... and if anyone has any other ideas for us, please send them to me at email@example.com!!!
Wednesday, June 24, 2009
So, please take a walk through our Father's Day weekend at the beach through a Slavik photo montage below!
Luke and Nate, introducing Luke to the ocean for the first time
Perhaps the only smile seen on Will's face the entire weekend, when we first got to the beach
Luke LOVED the ocean, especially the waves when they would almost knock him over. Shortly after this photo was taken, he got really brave and started yelling "bring it on!" to the sea.
We had a nice (but warm) outdoor patio dinner at Elijah's on the Wilmington Riverfront. Luke tried shrimp for the first time, though he ultimately liked the cocktail sauce better... until the horseradish got to him, and he started yelling "hot, hot, hot" and looking to Daddy for a cup of ice water.
Will FINALLY fell asleep at dinner. It was good for him to rest, and good for us to have a moment of peace.
After a night of little rest, Nate and I decided to skip his Father's Day brunch and head home. Not before Luke attacked the hotel elevator one last time (yelling "ding!" at the top of his lungs)... he even got ahold of the "assistance needed" button in the elevator several times. Our answer: Sorry! Two year old.
Will was all smiles on the way home, even enjoying a rousing game of "get the neck roll off of your head" while Nate and I scarfed down Dunkin Donuts. We tube fed him all the way home, to make up for some of the vomit he gave to Nate for Father's Day.
We talked a lot about Will seeming uncomfortable (though not in pain) and our family not getting much sleep over the past two weeks. We still have to figure out exactly the feeding regime that works for Will and for us. Will has always been a belly sleeper, and his belly isn't feeling 100% normal, so chances are, he isn't ever really getting into a deep sleep. We had a good night last night, though, so we're hoping we can keep trying to do the same type of routine (slow tube flow, starting Will out on his back, half way through the night, turning the feed off and letting him sleep on his belly without the tube poking him all night) tonight with the same luck!
Sunday, June 21, 2009
Yes, we had a tough weekend. I had planned out a little 1.5 day trip to Wilmington to spend the day Saturday at Wrightsville Beach, the night in Wilmington for dinner, and then have a great brunch in Wilmington today before we drove home. I could not have foreseen that Will wasn't going to sleep the night before we left, wasn't going to nap on Saturday, and was going to have another tough night last night though!
We tried to make the most of the weekend away, but it was tough. We aren't sure if Will's in pain from his surgery two weeks ago (he doesn't seem to be, but at this point, I am wracking my brain for anything that could be going on), if he's started to cut his 3 year molars, or if he really got used to being cuddled at the hospital. He just wasn't happy unless he was being held in an upright position, while you were moving around. Laying down with him wasn't an option. Standing still wasn't an option. Being near the ocean made him cry. Oy. We just couldn't win.
Whatever this is, though, has made for a long two weeks around here since Will's g-tube was placed. We have our two week post-op surgery appointment this week, so we'll be having a long discussion with the surgeons about this. Think positive thoughts that Will sleeps tonight!
Monday, June 15, 2009
I guess all boys like toys... we were hanging things in the boys' room this weekend and kept Luke well entertained in Will's crib by handing him (safe) tool after tool. He definitely liked the beeping and lights that the stud finder made!
Saturday, June 13, 2009
Will seems a lot happier being back at home and Luke is happy to see his brother again. There were times this week where Will would have a really tough time with pain, and when I'd talk to my mom later, she would tell me that Luke woke up from a dead sleep - screaming - at (what turned out to be) the same time that Will was crying his hardest. We haven't had any of those "twin occurrences" that people talk about before now, but then again, they haven't ever been separated for this long before either.
Though not the best photo of any of us, I am posting a pic of me and my boys at Will's discharge yesterday afternoon... I was so happy to get out of there! Luke was distracted by a nurse walking by (such a boy) and Will was sick of the camera in his face yet again!
Oh, and guess who's already up to 24 lbs?!?! Will weighed 23 lbs before the g-tube surgery... so this is progress, and a definitive reminder that this was the right thing for him!
Thursday, June 11, 2009
Tuesday, June 9, 2009
We felt no fear going into this surgery, so the hour long surgery wasn't nearly as bad of a wait for us as surgeries-past. We went down to our regular surgery waiting spot, the UNC Hospital cafeteria, and got some breakfast.
We got back up to the pediatric surgery waiting area just in time to see our neurosurgeon - though of course, he wasn't there to see us!! We talked with the parents of triplets for a while, one of whom was being evaluated by neurosurg today. We thought having twins was rough! It was nice to pass the time talking about our children and various experiences that having preemie multiples share.
Within minutes, our surgeon was calling our name, and told us that everything went really well with Will's surgery. Nothing unexpected, and we could see him soon. When he woke up, I went back and saw him (only one parent allowed at a time)... he wasn't really a happy camper coming out of anesthesia. We sang "Michael, Row Your Boat Ashore" about 800 times, and then Nate stayed with him until they had a bed ready for us on the 5th floor of the hospital.
So we've been up here for about 7 hours now, and Will's been having a rough go of it... he appears to be in more pain than we expected, and the order that the doctor wrote for Tylenol just isn't doing the trick. We tried a narcotic pain medicine, but Will was still huffing and whining, which is an indicator of pain. Every time we tried to pick him up, he would cry - I think because the new g-tube area is still very tender and no matter how careful we are, it gets a little jostled when we move him. Every time Will wants to move, he lifts up his legs in his normal pattern, but that pulls on his abdominal muscles, which hurts! So he catches himself with a painful start, and we know that he's about to get Old Man Face and cry. We feel so bad for him, but there isn't much we can do.
Now he has gotten morphine to manage the pain, and was finally able to take a nap. He just sneezed and that doesn't feel good, neither do the hiccups that he's gotten a couple of times today. Laughing and yawning also seems to be tough on his little body, so we're just doing our best to make him comfortable and get through the night.
Nate has gone home to stay with Luke and I am at the hospital. Will and I are about to bunk up and watch a movie... I wonder if his souped up hospital crib will hold my weight. I think he needs some mommy cuddling time.
Monday, June 8, 2009
Anyway, tonight in our pre-op preparations for Will, we had to bathe him in it. And then again tomorrow, before we leave for the hospital at 5:45a, he's got to have another super refreshing, super drying, super sterile smelling bath. Ouch! The poor kid's got sensitive skin... this isn't helping!
We got the call late this afternoon that we're scheduled for the OR first thing in the morning for Will's g-tube surgery. Hopefully the whole thing happens roughly on time, because we aren't allowed to feed him anything by mouth after midnight tonight.
This whole "planning for surgery" thing is really new for Nate and me. Aside from one time in the NICU, every surgery the boys have had has been in an emergency situation... shunts malfunctioning... neurosurgeons on call in the middle of the night. We've known for weeks that June 9 is the day. Its weird. I have actually had time this evening to walk around the house and calmly pack an overnight bag, rather than rushing around the house in a sleepy, scared, middle of the night, awake with a vomiting child stupor, actually able to think about what I'd like to have over the next three days, rather than what we can't live without for the next 24 hours! We even had the time and forethought to move Luke's car seat and stroller to Oma's car, to allow her some mobility over the next couple of days while we're tied up at UNC with Will.
Its all amazingly different, though not without anxiety, of course. We aren't looking forward to the surgery tomorrow, though we are looking forward to the end result of fat Will :)
If you'd like a better understanding of g-tubes and what our experience is going to be like, check out this super-cute, yet informative children's story that Nate found online today (its a .pdf file, so only open it if you've got Adobe Acrobat Reader).
So keep us in your thoughts... hopefully by noon tomorrow, Will will be on the road to chubby cheeks and a belly to match his brother's!
Monday, June 1, 2009
This week the House of Representatives has come to grips with what a $4.5 billion dollar deficit will look like and has begun an attempt at a spending plan without increased revenues. The results will be disastrous for all North Carolinians and even worse for NC citizens with disabilities and their families.
In the Department of Health and Human Services the Committee is expected to reduce spending by $1.35 billion. This cut must come from the $4.9 billion state funds in the DHHS budget. A 20% cut is terrible in its own right, but the DHHS only has $1.713 billion that is not in the Medicaid program matching federal funds. Of the remaining $1.713 billion, over $700 million is in the Division of MHDDSAS. Any dollar cut in Medicaid adds an additional $2 to the impact of the cut.
If the legislature doesn't take action, we can expect significant reductions in CAP/DD/personal care services/state funded developmental disabilities services/vocational rehabilitation services and much more.
In education, class sizes will increase dramatically, teacher assistant's positions and other support services will be eliminated, and the school year will be shortened by 5-10 days. Community colleges who train workers for our field will be slashed as well as University programs that produce teachers and professionals who support people with disabilities will be severely cut.
The week of June 1st is Critical to Stop Massive Budget Cuts. The House Health and Human Resources Committee have proposed cuts that will completely destroy North Carolina's system for supporting people with Developmental Disabilities. These cuts will set NC back decades in our support of people, will eliminate services to thousands, cause massive cuts to thousands more and eliminate tens of thousands of jobs. It is not an overstatement to say that people with developmental disabilities will lose their lives.
We must act now or these cuts will happen.
A few of the worst are
- Reducing the budget for MHDDSA state service dollars by over 150 million dollars
- Eliminating continuation increases in Medicaid of over 500,000 million dollars. This cut means serious reductions in CAP because any plan increases for individuals implemented during the last fiscal year will be eliminated!
- Freezes CAP Slots for a 15 million dollar savings-this means if someone moves, dies the slot is not available for anyone new
- Cuts all Medicaid service provider rates by 4% causing salary reductions and layoffs
- Cuts Medicaid personal care services by over 50 million dollars reducing this service by over half-this is the only direct service other than case management that is a Medicaid entitlement for people with developmental disabilities.
- Cuts Case Management services by over 50 million dollars by "consolidation"
The budget proposal also eliminates the Medicaid program Community Support which is the one Medicaid community program designed to support people with Mental Illness in community settings. The proposal cuts over 1.5 billion in state funds from DHHS by the end of the 2011 fiscal year. Because so much of the cut is in Medicaid the cut to NC's economy is over 4 billion dollars! We estimate that the cuts will reduce spending on the MHDDSA system at least one third and could reach more.
Here's what we must do!
Of course these cuts along with cuts in education, justice and other state service areas will cause outrage amongst organizations but we can not rely upon others to voice concern. Our action this week and through the summer is the difference in the future of our state!
In Wake County, contact your Wake County representative. Make a special call to Wake County representative and Minority Leader Skip Stam at 919-733-2962. These legislators must receive thousands of calls telling them that this is unacceptable! Everyone should call these leaders. And encourage friends, church members, family members, self advocates to call. E-mails will not work this time. WE MUST CALL.
Members will be back in their offices Monday afternoon. Start calling Monday at noon! Leave a message if you can't speak to your representative and call back if the line is busy.
For your member, call the Legislative Switchboard 919-733-4111 or go to the Legislative web site http://www.ncga.state.nc.us/ and look under the House member list for the phone number.
Here's the simple message you can tell your House member:
The proposed cuts in HHS and education will destroy our state, risking the lives of people with disabilities, our children's future. Cost thousands of jobs and drive our state into a depression! Raise taxes in order to avoid this disaster! We hold the House accountable!
If we fail to respond, people with disabilities and their families will see significant and life changing reductions in the supports and services offered by North Carolina.