"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Wednesday, March 11, 2015

March 11, 2015

My baby is 5 today. It’s amazing how quickly half a decade can go by like the blink of an eye. The progress Ben’s made in the past year has been slow, but it’s there. What may seem so insignificant to some people, can be huge to us. He’s holding his head up for longer periods of time, taking steps if someone is holding him under the armpits, understanding more and more words, and eating by mouth! He’s not a big fan of meat so I call him my little vegetarian. Some of his favorite foods are soy nut butter (he’s still allergic to peanuts) blended with banana, avocado, sweet potato, carrot souffle, pasta, yogurt, and pudding. We basically blend up whatever we can and let him try it. For the most part, he’s been pretty receptive. He’ll never eat enough for us to get rid of the tube, but I’m ok with that. I once hated that tube, but now I don’t think I’ll ever want to get rid of it. It’s become like a security blanket for us.

Our biggest medical issues have been controlling Ben’s seizures, and dealing with the tightness in his hamstrings and ankles. He’s had Botox treatments a few times now (twice in the hamstrings and he’ll be getting his second round in his ankles this month). Has it helped? Maybe. We can see more range of motion in his ankles, but I’m not sure it’s helped his hamstrings as much. I don’t like these treatments at all, but if we can postpone surgery we’re willing to keep doing it. 

This winter has been ridiculously long, but one thing I’m grateful for are the potholes and frost heaves we have all over the place. You’re probably thinking has this girl finally gone mad??? What is she thinking!!! Well, Ben LOVES driving over what we refer to as the “bumps”... especially the big ones! I’m sure the van will be in the shop soon, but I’ll do anything to see Ben laugh to the point of shaking.

One of the major highlights of this past year was our Make a Wish trip to Disney. It was absolutely amazing. Definitely the trip of a lifetime. I wish we could do it all over again! Seeing the joy on both of our kids faces was priceless.

I could go on and on, but it’s time for me to cut myself a big chunk of cake. Good night all!

Tuesday, March 11, 2014

March 11, 2014

I've been struggling to write this post. It's been four years since I delivered my boys and sometimes it feels like yesterday. Some memories just don't fade. I woke up this morning with a pain in my chest and I think it's pure heartache. Heartache from what I lost, from what will never be. Ryan and I put up a good front, but it's tough when we see little boys Ben's age running all around and talking. We don't even have to say a word; a shared look says it all... We should have two little boys running around and wreaking havoc in our lives. I will never understand why God decided to take Stephen, but I am forever grateful to him for letting us keep Ben and I try to believe Stephen is by his side all the time.

I've also come to accept Benjamin for the amazing boy that he is. As my dad says "he's our Ben!" Don't get me wrong, I'm not ready to make my home handicap accessible, and I'll probably throw out my back a dozen more times before I cave. At this point, I don't think he'll walk or talk anytime soon. However, I do cling to the evolution of medicine and the great strides we'll see with stem cell research within the next 5 years. The possibilities keep me going in addition to Ben's awesome smile.

His smile will turn anyone's frown upside-down. Such a corny saying, but it's true. It's absolutely infectious. Every morning when he wakes up, I sing the same song to him and I always get that smile. It's become our little ritual. He also smiles when he gets on the bus to go to school. No more screaming and sleeping through the day while he's there either. An occasional meltdown isn't out of the ordinary, but he knows what he wants / likes and what he doesn't which everyone says is a good thing.

I can't say enough about his school. From day 1 I've been so impressed. He's making small progress, but it's progress nonetheless. He's lifting his head up more and more. He wears a somewhat bulky supportive soft brace every day that makes a world of difference with his posture. He's able to sit in a Rifton seat so he's not always stuck in his stroller (which I rarely call it what it is, a wheelchair). Although his eyesight is still extremely poor, he'll briefly fixate on objects in front of him and he seems to like the color red the best.

The seizures (eye flutters and eye rolling) are still an everyday occurrence. I think we've found an okay mix of meds to shorten the length of the seizures while not doping him up too much. He's had two breakthrough cyanotic seizures the past 3 months which were scary, but we're hoping they were illness related since he had temps when he had them. 

He loves laughter. The more we laugh, he laughs. A boy who had what I compare to colic for 3 years can now chill. It's so nice to be able to put him in his "special seat" while we eat. We had become pros at eating with one hand! Which reminds me, Ben passed his swallow study last April and can now eat by mouth. Two days ago he actually ate almost half a cup of pureed pasta for dinner! Doesn't sound like much at all, but for Ben that's huge!

Speaking of huge, we have a big vacation coming up. We're going to Disney!! Ben was selected by the Make a Wish Foundation. Jadyn is beyond excited and it's just what our family needs. I'm nervous about taking Ben on a plane. If our flight was later in the day, I would definitely order myself a nice alcoholic beverage to ease my anxiety! Not sure I can do that at 7:00 in the morning though. Now that I think about it, might be nice to have people staring at me instead of Ben for a change so maybe I will do it!!  Note to self: ask Ryan how he feels about possibly having to carry both me and Ben off the plane. 

As Jadyn says on Ben's communication switch "that's all for now!"

Monday, March 11, 2013

March 11, 2013

Happy Birthday Benjamin and Stephen! I can't believe it's been three years since my boys came into this world. As much of a nightmare March 11, 2010 was, I wish I could go back in time to that very day because my heart wasn't broken yet. My two boys were struggling, but alive. Not a day has gone by, since March 14, 2010 that I have not missed Stephen, our "Baby A." I think about him all the time and know he is watching over his brother.

I thank God every day for letting us keep Ben. He's a lot of work, but his smile can melt your heart. Tomorrow will be his first day of school. We've talked about this transition for a year now and it's finally here. We've said goodbye to EI and Perkins, and we're heading on a new and exciting journey. The new backpack has been loaded up, and the "first day of school outfit" has been picked out. I'm hoping he'll make a good first impression, but who am I kidding! Ben will make a grand entrance that will most likely involve screaming and breath holding, but at least he'll be a handsome little devil!! This is going to be good for both of us. His teacher is an absolute gem, I couldn't be happier with his placement. I'm optimistic we'll start to see some progress with his development, which has sadly been the same for awhile. He's getting stronger since he's put on weight, but he still can't sit up on his own or even hold his head up for more than a few seconds.

I've been horrible about updating his blog and I feel guilty about it, but it's hard to write when there haven't been many changes... especially those for the better. There always seems to be something we're struggling with, whether it be the seizures, reflux, liver issues, etc. However, knowing Ben is happy, by seeing the smiles and hearing the laughter, is sometimes all that matters. I'm slowly learning to live in the moment.

Friday, August 31, 2012

August 31, 2012

We've had an extremely tough and trying week. The surgery last Friday didn't go as smoothly as we had anticipated. What was supposed to be an hour and a half in the OR, turned into a lot longer. I left Ben as he went to sleep and it was 5 hours before we got to see him again. My stomach was in knots. As far as what needed to be done, the surgery was a success. However, Ben ended up on a ventilator for 24 hours because he came out of anesthesia an absolute mess. We were in the ICU for 2 nights and spent the majority of the time trying to calm him down while they were pumping him with versed, morphine and some other heavy duty pain medication.

Before the surgery Ben was hypersensitive, irritable and not sleeping well at night and it's only gotten worse. We're up about every two hours trying to calm him down. He's not tolerating his feeds, and the reflux is out of control (during the day and at night). We're at a loss. I've been talking to GI, the pediatrician, and the neurologist to try and figure out what we should do.

As we wait for some answers, all we can do is try to remain positive. I keep telling my little buddy that "we're gonna figure this out!"

Monday, August 20, 2012

August 20, 2012

I can't believe the summer is almost over. I honestly feel like it just started. We've had a pretty uneventful few months healthwise. Ben was off the oxygen completely somewhere around the 4th of July and has been chugging along with no major respiratory infections. He came off one of his neurological meds (Clobazam) the beginning of August, and he's become extremely hypersensitive and irritable. My happy-go-lucky little dude can smile one minute and then work himself into a frenzy the next! I do have dramatic children... they get that from their father (he'll tell you they're all me in that respect, but don't believe him - wink, wink). Anyway, I'm hoping this will subside, but not sure if it means yet another new drug we'll have to add to the mix. Although the seizures are still uncontrolled, I'm not ready to deal with the side effects of a new medication.

Ben is having one more (hopefully it's the last) surgery on Friday. He's having an adenoidectomy and orchiopexy. They may also put tubes in his ears if they see a need. He'll be staying in the ICU for at least one night. I'm thankful they've already decided to place him in Intensive Care given his low pain tolerance. I'm extremely nervous and anxious. The 3rd floor waiting area at Children's is not one of my favorite places! 

Putting all the health issues aside for now, I'd love to tell you how nice our summer was. My kiddos are definitely beach babes. We've been lucky enough to make it down the Cape a couple of times and Ben usually chills in his "thrown" made of sand while Jadyn "surfs" on her boogie board, builds some cool sandcastles, and collects jellyfish, shells and sand fleas. Sand fleas are so gross by the way.

I'm getting sad about school starting. This year Jadyn will be going into first grade and Ben will be starting pre-school in March. Say what?!? He's most likely going to be at one of the Collaborative Schools, unless our town's school evaluator thinks the system can provide all the therapists Ben needs (such a fat chance). One thing I am excited about is a weekly group Ben and I will be joining at the Perkins School for the Blind in September. It's going to be great for both of us. Ben will have an hour and a half of therapy with the TVIs (Teachers of the Visually Impaired) while I get to go to a whole separate room and chat with other parents.

I'll do my best to give an update after Ben's surgery!

Saturday, May 26, 2012

May 26, 2012

Where do I start... well, Ben has been in Children's for 11 days now with a nasty case of pneumonia. If you remember, this past January we got to stay in the ICU for about a week. This time we're about 5 rooms down in the ICP (basically the step-down ICU). The care up here on the 11th floor couldn't be better, and I've loved all the nurses and doctors we've met, but Ben needs to start holding his oxygen so he can come home! I tell you though, sitting in a hopsital all day is enough to drive a person insane.

I thought I may have been certifiable the other day. It was Ryan's birthday, he was holding Ben, and we were having a nice family moment... About half an hour later he went to put Ben in his crib and we noticed his g-tube fell out! Of course this would happen... because we had to liven up the night right? Have a real party. Anyway, I call out to Ben's nurse and she comes over and tells us that they (the nurses) are not allowed to put a new g-tube in. The good part is the parents can do it! That's just fine and dandy if it doesn't take forever and a day to get one delivered up to his room. Knowing how quickly the hole in his stomach could close I asked for a catheter to stick in the hole so it would stay open. Now I have no problem putting a new g-tube in, but the thought of sticking that catheter into Ben made me squirm. After Ryan and I were arguing back and forth with each other saying "You do it" "No, you do it" (while stomach contents leaked out of Ben), my wonderful husband (on his birthday nonetheless) shoved the catheter into the hole. Here's the part where me going certifiably insane makes sense - I was singing and doing a little jig to try and make light of the fact that our poor baby had to wait so long for a new tube and that stomach juices were apparently still coming out of the hole around the catheter and making Ryan's fingers all slimy. However, I should say Ben held his oxygen very nicely for that 45 minutes!

He was scheduled to come home yesterday. I was going over the discharge instructions when he decided to desat to 71. We weren't going anywhere after that. The oxygen delivery was already scheduled to arrive at our house that evening so I took Jadyn home. We had a long overdue girls' night while Ryan hung out with Ben.

I'm not crazy about having oxygen in the house, but unfortunately because Ben's been so ill, he's dependent on it now. Jadyn and I got the delivery last night and I think we were both overwelmed! Not only do we have 3 tanks (a mother tank and two little baby tanks in our living room), we have a compressor which is big and loud. This is what Ben's 50' tubing will be hooked up to all day/night. It constantly creates the o2. Jadyn's exact words: "I do not want this STUFF in my house!" I don't either kiddo, but if we want your brother home, then we need it. We were already told he won't be coming home tomorrow either so please pray that he gets better soon and we're out of here on Monday!

Sunday, March 11, 2012

March 11, 2012

Happy 2nd Birthday to my sweet baby Benjamin and my little angel Stephen. I can't believe two years have passed already. We had a nice day with family, and Ben actually got to try a tiny bit of his cake! How can he eat cake when it's loaded with sugar you ask? Well, he's finally off the Ketogenic diet. I feel as though we gave it a good run, but it had been enough. It wasn't helping the seizures, and it was only making him more and more miserable each day.

In addition to quitting the diet, his neurologist has decided to wean Ben off his Phenobarbital. We were concerned with the fact that he's on too many seizure meds at this point and we don't know what's doing what (I'm honestly not sure any of them are helping). He's had a few irritable days dealing with withdrawal symptoms, but his energy level is coming back. He's trying to pick his head up more, and he kicks his legs like crazy when he's in his bouncy seat.

He's still having somewhere in the range of 40, sometimes 50 seizures a day (a couple of those are spasms which really make me depressed). We're not sure we'll ever be able to eliminate the seizures entirely, but I'm still hopeful we'll find that magic drug.

As usual Jadyn has been so patient and loving towards her brother. She's at that age where she's starting to question everything and I'm not talking about the usual "why is the sky blue?" We pray almost every night and she's been asking some great questions about God and her brothers. Some are easy to answer like "Did God have a cake for Stephen today?" My response "Of course he did!" Others are a little more invloved like "Why did God make Ben handicapped?" I started to get medical on this one, but then I stopped and told her that Ben is a fighter. I continued to tell her that he may have some problems, but he's with us for a reason and he's going to do great things. Not sure if that's the right answer, but it's what we believe.

Here's to Ben experiencing what I'm renaming the "Terrific Twos!"