tag:blogger.com,1999:blog-20647768170532184232024-02-08T13:36:51.839-05:00Benjamin's Baby StepsJackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.comBlogger76125tag:blogger.com,1999:blog-2064776817053218423.post-74284065315303264612015-03-11T20:52:00.000-04:002015-03-11T20:52:05.773-04:00March 11, 2015<div class="MsoNormal">
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. </div>
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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. </div>
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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. </div>
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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. </div>
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I could go on and on, but it’s time for me to cut myself a
big chunk of cake. Good night all!</div>
Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-43438078695880991312014-03-11T19:48:00.000-04:002014-03-11T19:48:01.785-04:00March 11, 2014
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<span style="font-family: Calibri;">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. </span></div>
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<span style="font-family: Calibri;">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. </span></div>
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<span style="font-family: Calibri;">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. </span></div>
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<span style="font-family: Calibri;">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. </span></div>
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<span style="font-family: Calibri;">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.<span style="mso-spacerun: yes;">
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<span style="font-family: Calibri;">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!</span></div>
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<span style="font-family: Calibri;">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!!<span style="mso-spacerun: yes;"> </span>Note to self: ask Ryan how he feels about
possibly having to carry both me and Ben off the plane.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">As Jadyn says on Ben's communication switch "that's all
for now!"</span></div>
Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-42524127277961475242013-03-11T22:44:00.000-04:002013-03-11T22:44:14.519-04:00March 11, 2013Happy 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. <br />
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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. <br />
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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.Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com2tag:blogger.com,1999:blog-2064776817053218423.post-57842268164152558252012-08-31T15:43:00.000-04:002012-08-31T15:43:06.722-04:00August 31, 2012We'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. <br />
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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. <br />
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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!" Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com1tag:blogger.com,1999:blog-2064776817053218423.post-20273273578676187892012-08-20T21:02:00.000-04:002012-08-20T21:02:34.811-04:00August 20, 2012I 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. <br />
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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! <br />
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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. <br />
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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. <br />
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I'll do my best to give an update after Ben's surgery!Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-43944158375310797552012-05-26T21:52:00.000-04:002012-05-26T21:52:29.031-04:00May 26, 2012Where 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. <br />
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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! <br />
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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. <br />
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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!Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-77065244451122090692012-03-11T22:05:00.002-04:002012-03-11T22:50:58.625-04:00March 11, 2012Happy 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Here's to Ben experiencing what I'm renaming the "Terrific Twos!"Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com1tag:blogger.com,1999:blog-2064776817053218423.post-12094554366270665732012-01-15T14:01:00.004-05:002012-02-06T21:57:08.153-05:00February 6, 2012I've started and stopped this entry a few times because I had really hoped I would have some positive news to share, but Benjamin has had a tough 2012 so far. He acquired his first respiratory virus the beginning of January and we spent 6 nights in the hospital. I have to say, I was extremely impressed with the ICU at Children's. He went downhill quickly and they were able to manage his care beautifully. I think since Benjamin has been doing so well (from a respiratory standpoint) we underestimated how dangerous the implications of catching a cold/virus could be for him. We also had a false sense of security thinking that because he had his Synagis shot, he wouldn't get RSV. Come to find out, his pulmonogist said one shot wasn't going to cut it. But, I'm happy to say he's doing much better now!<br /><br />We're still battling with the seizures. He's on yet another new med in addition to the diet (yes, he's STILL on the diet) with no change. If anything, they're getting worse again. It's unbelievably frustrating and sad. People ask what we can do while he's having them, and the answer is absolutely nothing. I spend a majority of my day making tick marks on a piece of paper. From the sounds of it, I think his Dr. is planning on starting another medication in a couple of weeks. There are only 1 or 2 left to try so please pray that one of these will work for him. Our little man needs to catch a break. Jadyn and I pray every night before bedtime for Benjamin's seizures to stop. She's one of his biggest supporters. She really loves her "buddy" as she so affectionately calls him now.Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-25220400837753035052011-12-20T22:14:00.002-05:002011-12-20T22:45:25.094-05:00December 20, 2011Benjamin's almost 6 weeks into the Ketogenic diet and we've seen no improvement. The first couple of weeks were hellish. He was up to 90 seizures a day, the reflux was horrific, and he was just plain miserable. We were told his seizures could increase for about two weeks so we were prepared for it, but had high hopes we would see a significant decrease after that time. The hardest part was the follow-up appointment we had with Dr. Thiele. The whole team was as defeated as we were! <br /><br />He's still on the diet, but probably not for much longer. Benjamin will most likely start a new drug called Banzel within the next few days. Banzel is the only drug left to try that has been found to effectively manager the types of seizures he's having. His epilepsy is difficult to treat because the seizures are firing from multiple spots in his brain. If this drug doesn't work, there are two left (both of which have scary side effects) that aren't as promising, and then it's back to square one... meaning we revisit all the drugs he's already tried.<br /><br />Despite the seizures, Ben's had some great days. He's my little cuddlebug and his smiles melt my heart. Usually during the early hours of the morning, Ryan and I end up with both kiddos in our bed and I love waking up and hearing Jadyn say "Good morning Ben Ben! Awww... Mom, he's smiling!" We are so blessed.Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-10491245567349583322011-11-06T20:49:00.002-05:002011-11-06T22:01:40.073-05:00November 6, 2011A few weeks ago Benjamin had an equipment evaluation at Children's and boy was that a wake-up call! I left there feeling grateful that we can get all of this stuff (a special stroller, stander and bath seat), but at the same time I felt so unbelievably sad that we need it. Seeing the stroller we'll be getting (which I keep calling a wheelchair because that's what it looks like) made Benjamin's challenges that much more real to me. I think the kicker was on our way out we were stuck in an elevator with a set of identical twin boys, just about Ben's age. I had a smile plastered on my face, and I was talking to them while thinking I couldn't get out of that elevator fast enough. It was a reminder of what I should have had. I know we're blessed, and I'm incredibly thankfully for Benjamin each and every day, but not having Stephen can be torture.<br /><br />In other medical news, Benjamin will be admitted to MGH in about a week to start the Ketogenic diet. It's basically an all fat diet that's used in children with seizures that are difficult to control with drugs. He'll have a special soy-based formula and we'll be given a list of all the things he can eat by mouth. We've been practicing... so far he's tried bacon in a mesh bag which he didn't mind, and just the other night I pureed a breakfast sausage which I believe, if he could, he would have given two thumbs up. He ate the whole thing! Because he has the g-tube, this diet won't be that hard to control, but it'll still be challenging because all his food has to be weighed.<br /><br />It's hard for me to write more tonight because I can't take my mind off two other unbelievably special boys that are struggling with some health issues. Jadyn and I had a lot of people to pray for tonight.<br /><br />More to come in a few weeks...Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-42838508901391129932011-09-24T20:21:00.002-04:002011-09-24T21:04:29.016-04:00September 24, 2011I can't believe it's been a little over a year since Benjamin came home from the hospital. I wish I could say he's made unbelievable progress this past year, but that's not the case. Because his seizures are still not controlled, we recently decided to move his neurology care over to MGH. Our meeting with the new doctor went really well, and she's already making medication changes. I can't even describe the feelings we go through with each new medication... first there's excitement and hope, and then despair and frustration. I can't wait for the day when we realize we've found the right concoction! It saddens me because I can almost sense that Benjamin wants to move and communicate, but it's like he's trapped in this body that doesn't work very well and a mind that's confusing him.<br /><br />I've been obsessed with his teeth or lack thereof. I've asked almost every medical professional if they can tell me when he's going to cut a tooth. I was so desperate for an answer that I even cornered a dental hygienist at a fundraiser we went to (I thought Ryan was going to hide)! <br /><br />A dear friend of mine, who had a little guy in the NICU when Benjamin was there, warned me that preemies' teeth sometimes come in black from all the antibiotics and other medications they had. Well, as fate would have it, over the past day we noticed Benjamin's bottom right tooth coming in and the bud is brown! So of course now I want to push the darn tooth right back in! For goodness sake, as if the poor baby doesn't already get stares, now we have to deal with this.<br /><br />Not much else is happening around here besides more doctors' appointments and therapy sessions. I apologize to those who have called me, or sent me messages that I haven't been able to return. I wish there were more hours in a day. Between appointments and work, I've been trying to keep the little princess busy. Thankfully she's loving school. I guess there's a little boy in her class that has a crush on her and has been singing songs about her. As if we don't have enough to worry about!Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-4268271349241279182011-07-29T21:53:00.002-04:002011-07-29T23:37:16.331-04:00July 29, 2011I can't believe how bad I've been about updating this blog! It's been over two months since my last post and while work has kept me busy, "Ben Ben" (as Jadyn calls him), has kept me even busier. I wish I could say things are going really well, but I'd be lying. We were able to spend a few relaxing days at the beach between hospital admissions, but that seems to be the way our summer is playing out.<br /><br />To make a long story short, Benjamin’s seizures are still not under control. He started having infantile spasms and was diagnosed with a modified hypsarrhythmia EEG pattern. The first drug we tried was a failure, so he was admitted to Children’s this past Tuesday to start another treatment - Acthar gel injections. Luckily we have a nurse coming in every day to help with the steroid injections (he gets a total of 20 over a 5 week period) because I have a really hard time giving them to him. It would be a piece of cake if it wasn’t my own kid.<br /><br />We couldn’t leave the hospital until we mastered the shot. I was determined to get out of there so I rolled up my sleeves and did what I had to do. It was actually comical because we were taught on oranges and maple syrup (the Acthar is really thick) and apparently I did a good job on the orange although I may have been “a bit too aggressive” according to the nurses. The needle goes through the orange rind a lot easier than one would think! When it came time for me to give Benjamin the injection I was definitely more hesitant, and apologized profusely to my little baby when it was over. Not a good feeling at all.<br /><br />There are a lot of side effects to the treatment and we’re already seeing quite a few. We have to monitor his urine every morning for sugar, his blood pressure twice a week and his stools twice a week as well. He’s extremely irritable and his reflux is so bad he was actually vomiting blood today. However, fingers crossed, I think the treatment might be working. He’s still actively seizing, but I’m not seeing as many seizures each day.<br /><br />In addition to the side effects mentioned above, the steroid weakens his immune system so the little man is at a greater risk for infection. If that isn’t scary to begin with, he can’t get immunizations (or his flu shot) for 6 months after the end of the treatment because they won’t be effective. This means another winter in quarantine. But, if we can stop the seizures and see some developmental progress it’s worth it!<br /><br />People have been asking about Jadyn and that means a lot to us. She’s doing very well, and if she doesn’t grow up to be a nurse or a doctor, I think she might be an actress. She does great impressions and loves to role play. She keeps us sane and is always good for a laugh. The voice that comes out of her small stature is incredible and I think Benjamin is enamored with her. One thing we’ve noticed is if Benjamin is crying and Jadyn starts, he stops!<br /><br />We'll be scheduling another Children's admission when treatment ends, but we're planning on hitting the beach a few more times beforehand. Surprisingly Benjamin loves the beach. I lay him on his side on a blanket under the shade and he either sleeps or gnaws on his hand and listens to the waves. We even dipped his toes in the water and he seemed to like it. Maybe next year he'll be able to sit up and play in the sand!Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-31284857972265475462011-05-08T13:01:00.017-04:002011-05-23T23:19:40.306-04:00May 23, 2011We're still trying to get Benjamin's seizures under control. I remember writing a paper in grad school on the rising prevalence of medical errors and unfortunately I can say we've experienced this firsthand. We asked Benjamin's GI doctor last week if we could increase the drug he's on for gut motility because his reflux is out of control again. He said we could, but asked what seizure med Benjamin was on because the Erythromycin can interact with certain drugs. Well, although we fill out med sheets every time we have an appt. at Children's, his neurologist said she was unaware he was taking the Erythromycin. Regardless of whether or not she actually reads the med lists when we visit, her team was giving him both medications when he was admitted to the hospital over a month ago! I can even remember one Fellow or Resident asking us when she was signing off on the discharge papers why he was on the Erythromycin! Hello??? Are you kidding me? There should have been sirens and blinking red lights going off in the room! Anyway, to make a long story short, there are now only two seizure medications Benjamin can try that aren't metabolized by the liver (and therefore will have no interaction with the Erythromycin which is the only drug used for gut motility at the moment). One can cause permanent peripheral vision loss and the other can cause heart problems. His neurologist was anxious to start one of them, but I told her we needed to wait and talk to Benjamin's ophthalmologist before we made any decisions. We're planning on talking with him tomorrow and hopefully then we can come up with a new plan<br /><br />On a positive note, we weaned off the Keppra about two weeks ago and what a change in Benjamin's disposition! He’s starting to smile more and will almost laugh when we tickle him! He’s not doing anything a baby his age would normally be doing (rolling, crawling, sitting, playing with toys or babbling), but he most certainly has a wonderful personality.<br /><br />We just ordered him new glasses because his prescription went up again. Poor little guy. I’m not even sure they make a difference, but we’ll continue to put them on him. His EI therapist brought him a special suit. It comes in two pieces that velcro together and it's designed to help give him some “sensory input” and make his trunk stronger. The material it's made of is really stretchy and almost feels like a smooth rubber on the back, but it's completely breathable. He’s also getting fitted for leg braces soon. He’s going to have to wear them the entire day. That breaks my heart because I know he’s going to hate them, but at this point we have to be proactive and stretch him as much as we can so he doesn’t develop contractures.<br /><br />I can't wait for some warm weather so we can go out for a walk! When we did have some sunny days, he seemed to enjoy the outdoors (as long as the wind didn't blow). It would be great if he could sit in a bucket swing, but I'm not sure we're quite there yet! I tried one of those jumpy seats that goes in the middle of the doorway, but that was pretty much a disaster. First off, he can't "spin" because that can bring on a seizure; and second, no matter how much padding I stuffed around him, he still fell over. Needless to say, that thing was quickly tossed down the basement stairs!Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-57429661713854720292011-04-16T22:59:00.002-04:002011-04-16T23:34:11.790-04:00April 16, 2011While Benjamin continues to have seizures, he was discharged late yesterday afternoon. The official EEG results were devastating. Ryan was working so I was the only one in the room when his doctor came in at the end of the day to discuss them with me. I was told that between seizures, Benjamin's "background activity" is extremely disorganized with no recognizable pattern. What's most concerning is that the "disorganization" has evolved from his last EEG which was about 2 weeks ago. Right now they're diagnosing him as having general epilepsy, but his primary neuro doctor is worried that he may develop a condition called hypsarrhythmia. I asked her what this meant, and she said the seizures will most likely escalate. She said Benjamin will always need to be on a moderate to heavy dose of multiple seizure meds. She said the goal is for him not to be so medicated that he's "not Benjamin anymore." I had him sleeping so peacefully in my arms and I just looked at him and broke down. I told her that I know he's not going to be perfect, but I want him to have a good quality of life. Ryan arrived shortly after (in time for the next round of neuro doctors to come in) and got the same story. I started crying again and all I could say to them was "hasn't this poor little boy been through enough?" I really thought having gone through what we went through a year ago, I would get used to these bombshells being dropped on us, but I'm not. Maybe I've been living in denial for a bit. Who knows. But all of a sudden this is very real and unbelievably scary. Ryan and I are finding ourselves asking the same questions we asked a year ago... Why is this happening to us? Why can't Benjamin catch a break?Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com2tag:blogger.com,1999:blog-2064776817053218423.post-32116188095091008522011-04-14T23:03:00.002-04:002011-04-14T23:24:15.585-04:00April 14, 2011Well, we're still at Children's. We got some pretty devastating news late this afternoon. Benjamin's discharge papers were getting filled out when the neuro docs rounded and put the kibosh on it. We learned that the "quirky" behavior I was referring to in my last post (the head turning and eye fluttering) showed up as seizures on the EEG. I wouldn't be so upset if he did this only a few times a day; however, these seizures are almost constant and the phenobarbital hasn't had an effect on them. If I actually counted them, there's a possibility he could have them more than 100 times a day. We were told it can take kids a few minutes to even hours to recover from a seizure. The larger ones really tire Benjamin out. These smaller ones don't seem to take much out of him, but if he has them every 5 or 10 minutes and it takes him a few minutes to get over them, this isn't good. It's definitely a distraction for him and will hamper his development and progress. He's getting an even larger dose of phenobarbital so we'll see how his day is tomorrow. I feel like this poor little baby can't catch a break. He even broke out in hives from the solution used to take the EEG probes off his head! Please keep our little man in your thoughts and prayers. I'm confident we'll get through this. No matter how much I want to be home, it's good we're here. It's going to get better. If I keep saying that over and over maybe it'll come true.Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com2tag:blogger.com,1999:blog-2064776817053218423.post-71618616458963143642011-04-13T14:51:00.004-04:002011-04-13T16:14:36.571-04:00April 13, 2011Benjamin's managed to ward off a hospital stay for almost 7 months and I'm so proud of him for that! But here I am, typing from the Neurology ward at Children's 9NW. The episodes Benjamin's been experiencing are in fact seizures and they've been escalating since my last post. This has been one of my biggest fears. He started on the Keppra about two weeks ago and he's been nothing but a mess. One of the side effects to the medication is "hostility" and boy has he been irritable! We could have handled the irritabilty, but the continuation of the seizures has driven us crazy. We've gone up twice on the Keppra with no improvement whatsoever. <br /><br />I had a gut feeling yesterday wasn't going to be a good day. Benjamin had two short seizures even before his OT session at 10am. During OT, he had another one that lasted about one minute (it doesn't seem like a long time, but when you're living it, it's an eternity). Needless to say, we ended OT early, I took him home and called the neurologist. Her recommendation was to give him an extra bolus of the Keppra and increase his regular dosage going forward. A few hours later he had another seizure and his face was turning blue. He came out of it briefly and then seized again. I called 911, the ambulance took us to South Shore where we stayed for a few hours. In the ER we saw our two favorite RTs and I was so grateful! There's nothing like seeing a familiar and caring face when you're in a not so great place. A few hours later, the docs loaded him up with Phenobarbital and we were en route to Children's. Once we got here they gave him another huge dose of Phenobarbital and he was pretty much done for the night. <br /><br />We were a little worried this morning because he was like a little rag doll; unbelievably floppy. We were so afraid this was what he was going to be like going forward, but we were put at ease when neurology rounded this morning and told us they slammed him with the drugs and he would normalize after a few days. They said he would basically feel drunk for two days. <br /><br />He's hooked up to the EEG through tomorrow to make sure the other unusual behavior he's exhibiting all the time (the head turning and eye fluttering) isn't a seizure as well. We know the mouth drooping and lip smacking is definitely seizure activity, but we're hoping this other stuff is just Benjamin being quirky! <br /><br />We're keeping our fingers crossed that he remains seizure free tonight and we can go home tomorrow. Although the nurses and doctors have been wonderful, I don't like sleeping here and I miss Jadyn. <br /><br />She was home with me and my mom yesterday when I had to call 911. I was afraid she could sense my panic and was going to get all upset, but I should have realized that wasn't going to be the case. She was her usual self, and was entranced with the commotion. As I was running around the house trying to gather what I would need for the hospital this little voice ws right behind me telling me I had better move it because the guys in the ambulance were waiting for me!Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com1tag:blogger.com,1999:blog-2064776817053218423.post-66715508067135174902011-03-14T21:34:00.002-04:002011-03-14T23:03:30.229-04:00March 14, 2011I think about the laser ablation and the boys' births everyday, but the details really came flooding back over the past week and a half. Benjamin turned 1 last Friday and as much as I wanted to celebrate, my heart just wasn't in it. I baked a cake, we sang happy birthday and took a few pictures, but that was about it. I promised my beautiful little boy that next year will be different. I do want to thank everyone who sent me notes wishing him a happy birthday, cards and gifts. Even though I had a hard time acknowledging the day, I'm grateful for those that did. <br /><br />Today was especially hard because it's the anniversary of Stephen's death. If I had known what was to come, I would have have spent every minute of those 3 days we had him by his isolette. Even though Benjamin is bigger now, sometimes when I look at him I have flashbacks of Stephen's perfect little face. It comforts me to know that this is exactly what Stephen would have looked like if he was still with us. I don't have wonder. <br /><br />To add to this already depressing post, I'm fairly certain Benjamin is having seizures. He's displaying all the sigs of petit mal seizures and he has them multiple times a day. I guess since an MRI isn't in the near future, he'll most likely have to have an EEG.<br /><br />We finally have a GI doctor and so far I really like him. Benjamin's now considered "failure to thrive" because he hasn't gained any weight in over 3 months and this doctor is going to help us chunk him back up! Over the past few days we've been increasing his tube feedings and he's gagging alot, spitting more and overall uncomfortable. He'll be starting back on the Erythromycin tomorrow. Add another med to the mix! <br /><br />I keep telling myself it could be worse. We've hit a few bumps in the road, but things will get better!Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com2tag:blogger.com,1999:blog-2064776817053218423.post-52939543764915796812011-02-15T11:11:00.005-05:002011-02-15T23:45:44.692-05:00February 15, 2011I feel as though a lot of craziness has happened since my last post. We had a good appointment with Neurology. They didn't argue with us at all about dropping Benjamin's neuro meds. They decided we should start with the Neurontin. We gradually decreased his dosage, and he was completely off after about a week and a half. So far, we haven't noticed much of a difference with his eyes. We're going to slowly start to wean him off the Clonazepam (Klonopin), starting today. He probably won't completly come off until the beginning of April (it has to be that slow). Hopefully we'll start to see him gain some strength in his neck and upper torso after we get rid of this one. It's so sad that he's 11 months old and he still can't hold his head up for more than 3 or 4 seconds at a time.<br /><br />He's been more irritable than normal lately and I don't believe it's related to the lack of Neurontin, even though the purpose of that med is to treat irritability. He's definitely teething and it almost looks like he's going to get quite a few at once. I can't feel the "points" yet, but there's a lot of whiteness going on and a few large bumps.<br /><br />Although the Pats didn't play, Superbowl Sunday was memorable for us this year that's for sure! We don't know how it really happened, but Benjamin managed to remove his g-tube without his hands! I have a feeling he arched it out. It was due to be replaced soon anyway and we think the balloon that's used to keep it in his belly was leaking. I have to say we handled the situation beautifully... I had envisioned this happening at some point, and thought when it did mass panic and a lot of screaming (on my part) would ensue. This is basically what happened:<br /><br />Ryan: (In the process of trying to calm Benjamin down) "Ummm, yeah, okay... Jackie? The g-tube's out!"<br /><br />Me: "Huh?"<br /><br />Ryan: (Walking toward me with Benjamin in one arm while holding the g-tube with deflated balloon in his hand) "Benjamin managed to get his g-tube out."<br /><br />Me: "Are you kidding me?" (I go into auto pilot, grab baby, put him on his changing pad, slap a piece of gauze over the open hole in his belly and tape it down like crazy, hand baby back to dad) "Okay, take him to Children's! I'll stay with Jadyn."<br /><br />Ryan: (Grabs the replacement g-tube the therapy company sent to us that we were supposed to take to Dr. Buchmiller for her to put in) "Well, we have the replacement g-tube... I'm going to do it myself!"<br /><br />Me: (Looking at Ryan in horror) "Are you out of your mind??? We haven't been shown how to do this yet!" (Grab g-tube box out of his hand). "Go turn the car on so it's warm, I'll grab Jadyn and we'll all go to the ER in case I need to feed Benjamin." (If I had actually thought for a second I would have realized I couldn't feed him until the new tube was placed because the milk would have just leaked out of his belly.)<br /><br />Jadyn: "What's going on? Where are we going?" (I explain what happened) "Can I see it?? I want to see it!!"<br /><br />We were in Children's in record time (less than an hour) and we were told the g-tube hole had already started to close! We were there for about 3 hours because the ER docs had to contact surgery to figure out which dept. was going to put the tube in. They explained to us that this replacement was a little more complicated because the new tube is the next size up and it had to go through a small amount of vascular tissue. Thank the lord Ryan didn't decide to play doctor at home! Jadyn, god love her, was literally standing in the middle of all the doctors so she could see the action. I was in the back of the room because I couldn't bare to watch and she kept asking if she could look at the hole again!<br /><br />After pool therapy the following Friday, we noticed his g-tube site looked purple/red and blistery. We thought, hey we're at South Shore, might as well take him down to the ER and have it checked out. Big mistake. I asked at the desk if they thought we would be there long because we would go to Children's instead. They said we would be called right in and a doc would take a look at it. We waited for about half an hour and were only called in because I told them I needed a place to feed Benjamin. We ended up waiting for almost 4 hours to see a doctor. We had Benjamin in his carseat and we were ready to walk out when he finally came in. He thought it didn't look that bad and we got a prescription for a cream that basically did nothing. I don't think I will ever take either one of my children to that ER again.<br /><br />This morning I took Benjamin to see one of the Children's surgeons who runs a clinic out of South Shore every Tuesday. He was wonderful. He took one look at the site and said the blistery looking area was some granulation tissue. He recommended treating it with a silver nitrate stick and that's what he did. He burned the area before I could even comprehend what was going on and that was it! His skin around the g-tube is now black which I find very disturbing. Benjamin didn't like that experience so much and basically screamed the rest of the day. We get to repeat it again next Tuesday. I'm so looking forward to that.<br /><br />The icing on the cake was the unexpected call I got today from one of Benjamin's Neurologists. At our last appt. they recommended he get an MRI when he turns one. We reminded them that he has that piece of wire stuck in him from when they tried to get his central line during his last big surgery. They said before they booked the MRI, they needed to follow-up with surgery about that wire because it may not be safe for Benjamin to have an MRI. Well, come to find out (from my conversation today), the wire, is actually stuck in his vein and it has the potential (although unlikely) to travel to his brain during the MRI. They went so far as to call the manufacturer of the wire and this company could not gurantee 100% that this wire is MRI compatible. So, since this MRI is nothing urgent, I was told they're going to hold off. That's all fine and well with me, but my son will probably need an MRI at some point and how are we going to figure this out??!! Ryan and I are going to have to push for some answers on this one because this isn't right.Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com1tag:blogger.com,1999:blog-2064776817053218423.post-26781116391880303162011-01-25T21:17:00.004-05:002011-01-25T22:14:30.230-05:00January 25, 2011It's been forever and a day since my last Benjamin update, but there's not much to write about. It's hard for me to see the changes in him because I'm with him practically every hour of every day. I really need to start taking weekly videos of him so I can look back and actually see the progress he's making because I think it'll make me feel better and maybe a little more hopeful.<br /><br />Right now his eyes are worrying me. They're big and beautiful, but he's just not using them! I have been going crazy trying to figure out how he could go from tracking objects and his mobile months ago when he was in the hospital, to a blank stare. I was talking to his Perkins School teacher and we realized the deterioration in his vision occurred shortly after he started the neurological meds. It makes total sense. The drugs are used to "calm" the brain and reduce irritability and spasticity, but they probably don't calm only certain areas of the brain... so I'm convinced they're impacting his visual development. We actually saw Benjamin's ophthalmologist today and he said it's not out of the realm of possibility. He said he's seen adult vision affected by these meds and there's no reason not to believe they're related to some degree to Benjamin's vision problems. We have an appointment with Neurology on Thursday and I really want to see him weaned from these drugs. I know his neurologists are going to be hesitant about taking him off the drugs because they also have the benefit of preventing seizures. At least we can argue that Benjamin has been less irritable, which would be one pro for weaning the Neurontin. He still has his moments, don't get me wrong, but the time it takes to soothe him is getting shorter. His EI therapist saw him today and she said she saw a difference so I know it's not in my head. I will admit, I do have moments of insanity, but this was not one of them!<br /><br />Quite a few people have been asking me how his Renal appointment went and we know the same now as we did before the appointment. I thought he would be getting an ultrasound. Never happened. It was never even scheduled! We basically had an appointment to meet yet another doctor who would give us another possible medical issue to worry about. We were told because Benjamin had, and may still have, kidney stones, he could be susceptible to getting them over and over again. This doctor also said that has the potential to suffer kidney failure down the road given his medical history. I was told to have some concern, but to not be "overly concerned." Gee thanks. They tried to get a urine sample, but most of it ended up on my pants because the bag they put on him wasn't on correctly. I should mention that happened AFTER I was puked on. They wanted to get a blood test the same time as the urine sample so they were kind enough to give us our own bags and told us when we came back for our Complex Care appointment, we could give all the samples then. So basically I left that day with no answers, a cranky baby, throw up in my hair and down my shirt, and urine all over my pants. Thankfully my wonderful dad was with me because I think I would have screamed and cursed (well, I actually did, but he was there to keep me company and listen to me rant and rave).Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com1tag:blogger.com,1999:blog-2064776817053218423.post-25392548045954894782011-01-01T21:07:00.003-05:002011-01-01T22:31:17.711-05:00January 1, 2011A few days after my last post, we got the call that Benjamin's glasses had come in. I thought it was ironic that a friend of mine emailed me that very morning to tell me that it was Saint Lucia's day (she's the patron Saint of the blind) and that she said a prayer for Benjamin's eyes. His glasses weren't due in for another 4 or 5 weeks. I was thinking it was an omen and that we needed to get those glasses asap! On our way to pick them up I was filled with a bunch of different emotions... sadness because my baby had to wear glasses, excitement because maybe he could finally see, and nervousess because what if he couldn't. It took awhile for him to adjust to them and after about a week, we started seeing slight improvements. His eyes aren't crossing as much and certain things catch his attention (mostly shiny objects), But, he absolutely hates them. The wire frames leave marks on his little face and are always sliding down his nose. We've decided to get him another pair that are so flexible you can actually bend them. They'll be in next week, and I'm keeping my fingers crossed he doesn't scream when he has to wear them like he does now.<br /><br />We've got a busy month of doctors' appointments. Monday we'll be going into Children's for an ultrasound on Benjamin's kidneys. Hopefully his kidney stones are gone. If not, I'm not sure what the course of action will be. Later this month we'll be meeting with opthamology, neurology and complex care.<br /><br />Benjamin had his first therapy session in the pool a few weeks ago and did really well. His legs were very easy to move in the water and the therapist was able to give his muscles a good stretch. He did a lot better in the water than he does "on land." He has major problems when he is transitioned from one position to another. For example, if I calm him down in my arms and then gently put him on his back on the floor he is usually okay. However, as soon as I try to turn him onto his side, he flips out and will scream until he turns blue. It's also extremely hard to break his extention when he tenses up. When he's upset he'll throw his head back, arch his back and kick his legs out. We have to fight him and try and curl his body inward. Once we can break that extension, it's not as hard to calm him down.<br /><br />Anyway, good riddance 2010! We were only three weeks into the year when I got the devastating news that I had twin to twin transfusion syndrome and it was downhill from there. Although I'm unbelievably grateful that this past year brought us Benjamin, I've never been more excited to see a year end. I'm hoping 2011 brings my family and friends good health and happiness. I can't wait to spend the summer with the kids down the Cape, like we should have been doing last year, and I'm looking forward to watching Benjamin reach his milestones and surpass everyone's expectations.Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com1tag:blogger.com,1999:blog-2064776817053218423.post-55921658459166636802010-12-11T21:41:00.005-05:002010-12-12T00:05:16.827-05:00December 11, 2010Benjamin turned 9 months old today. I know it's been weeks since I last posted, but not much is new in his little world. Shortly after my last update, we took a ride to pick out Benjamin's glasses. Yup, the little man will be sporting a pair of specs in about a month and a half (it takes forever and a day for Mass Health to ship the glasses). I'm praying so hard they'll make a difference. We've been trying to get him to look at us, his toys, anything; and if he does, it's very brief. It really worries me.<br /><br />As far as the rest of him goes, he's definitely more alert, but the arching is getting bad again. Most likely because we weaned his Clonazepam (Klonopin) down almost by half. We're not scheduled to meet with neurology until January, but we may have to make a phone call if it gets any worse.<br /><br />He's still nursing and we've been experimenting with solid food! We just touch it to his lips, and if he's in a good mood, he'll start smacking. It's very cute. Obviously he doesn't get much... the point is just to introduce him to new tastes and textures. So far he doesn't seem to mind bananas, squash and prunes.<br /><br />Last week we attended a mass of remembrance provided by South Shore Hospital for those families that suffered the loss of a child. It was a beautiful service, but depressing. Sometimes we feel very alone so it was comforting to talk to others who have experienced loss. I can't believe it's been three quarters of a year since I had my babies. Every day that goes by, whether sunny or not, is still cloudy for me. I'm finding the holidays to be especially tough. I push forward, and for the sake of Jadyn and Benjamin, I put a smile on my face, but the pain over the loss of Stephen is still so fresh and raw. Not a day goes by that I don't think about him and wish with all my heart that he was still with us.Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com0tag:blogger.com,1999:blog-2064776817053218423.post-76012978205075548242010-11-20T17:03:00.003-05:002010-11-22T22:52:15.230-05:00November 22, 2010The crazy schedule continues. We have quite a few appointments lined up at Children's in between all the therapy sessions.<br /><br />Tomorrow we're at the Children's Clinic at Mass Eye and Ear. Benjamin's eyes are still a mess. He will focus, but only briefly and then his eyes will either cross or he'll drop his gaze. He avoids his mobile completely now, but for some reason he's fascinated by the warning label on inside of his carseat. Go figure.<br /><br />He's actually going to see a urologist next week. When we met with the nurse practitioner and doctor in CCS (Complex Care Service) we went over, in detail, his medical history. I mentioned that he had a renal ultrasound a while back and we were told it was normal. Well, when they uploaded the ultrasound report, we found out that he does still have calcifications in his kidneys!<br /><br />Benjamin's been working really hard over the past few weeks with his physical therapy and we're noticing a slight difference. His neck seems to be getting stronger, and his grasp is a little tighter. He's 8 months old, 5 months adjusted, and at about 1 month developmentally (at least that's according to the milestone charts I've found online). We have a long way to go, and it's unbelievably frustrating at times, but even the smallest amount of progress keeps us pushing forward.<br /><br />We are still having major issues with the bottle, but I am cautiously optimistic because he's started nursing a bit again. Knowing Benjamin, this could come to a screeching halt, but hopefully not. It's a good thing I didn't stop pumping completely, but I have been trying to bump my supply back up because he's losing a little weight and it's not easy. He's still being fed at night continuously over the pump for about 11 hours. That being said, if he's not getting enough right now during the day, at least he's getting a good amount at night. When we met with CCS, he wasn't taking the bottle, he wasn't nursing, and he was spitting upwards to 4 times a day. They started talking about more surgery (possibly a <a href="http://en.wikipedia.org/wiki/Nissen_fundoplication">nissen fundoplication </a>or converting his g-tube to a <a href="http://www.childrenshospital.org/az/Site943/mainpageS943P0.html">gj-tube</a>). We were adamant that he does not need the fundo or the gj-tube. Since that meeting, the reflux is still noticeable, but he only spits maybe two or three times a week. I think now that he's not spitting nearly as much, and he's obviously not in pain when he swallows (because he's nursing), I don't think the endoscopy is necessary either.<br /><br />Let's hope the little man keeps up the good work and starts gaining some serious weight again!Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com3tag:blogger.com,1999:blog-2064776817053218423.post-28772930188465138162010-11-05T22:41:00.002-04:002010-11-05T23:53:29.831-04:00November 5, 2010Life sure isn't getting any easier for Benjamin or for us. He's been vomiting almost after every feed and even when we administer his meds now. It's really hard to get the reflux under control when he throws up his medication!<br /><br />We were at Children's on Monday and Tuesday of this past week for an upper GI and a swallow study. The upper GI took almost 4 hours because Benjamin had to keep getting x-rays every half hour or so. It ruled out any narrowing or strictures in his bowel (which was such a relief). The barium swallow was done to determine if Benjamin could be silently aspirating. We were in the room the entire time and I can honestly say it was the most bizarre and disturbing experience. They sat Benjamin in this plastic seat and asked me to feed him a bottle of barium. He started screaming which I knew he would do because he has an oral aversion. I told them I wasn't comfortable feeding him like that, and asked if one of the techs could take over. After a few failed attempts with the bottle, they decided to try and spoon some rice cereal mixed with barium into his mouth. At this point he was sputtering barium and gagging. They then brought out a sippy cup and told us they would have to pour the barium down his throat! They handed him back to us and the poor little thing even had barium around his fingernails. He never aspirated, but the conclusion was he has trouble protecting his airway. Umm, do you think it's because he was screaming the entire time?!? Anyway, we now have to thicken his bottles with this gel-like substance called simply thick. He seemed to do well the first few times we fed it to him, but now not so much. We're going to try a thickening powder to see if that makes a difference.<br /><br />We were busy the rest of the week as well. Benjamin had his first session with his teacher from the Perkins School on Tuesday morning. It was a shame he slept almost the entire time! He has an opthamology appointment at the end of the month and I think the recommendation for glasses is going to be sooner rather than later. He's starting to have a lot of convergence (his eyes are crossing) when he tries to focus. It appears as though he can see about 6 inches in front of him and then loses vision beyond that. He has been maintaing eye contact with me for longer periods of time when I hold him, but he's still not doing a great job of tracking.<br /><br />On Wednesday his Physical Therapist from EI came over. She was able to show me how to move him into different positions to stretch some of his muscles. He has major sensory issues and she spent most of the time trying to calm him down and get him into a position he could tolerate. I've noticed when I'm holding him and he's comfortable and sleeping, the minute I move even an inch, he tremors and screams.<br /><br />Thursday morning we were at the Outpatient Rehabilitation Center at South Shore Hospital for an OT evaluation. Again, the therapists couldn't do much with him because he was so sensitive, but were able to learn alot about him and they couldn't get over his eyelashes. Everywhere we go, that's the first thing people notice! I think we'll be at the hospital at least twice a week, if not three times (one day each for OT, PT, and Feeding/Speech).<br /><br />Benjamin got his first Synagis shot Thursday afternoon. He was not a happy camper. Even before he got his shot, he decided to vomit all over himself. Good times. We cleaned him up and then it was time for him to have his shot. They split the dose into two injections, but were kind enough to administer them at the same time. Benjamin screamed so hard he actually held his breath and turned blue. The nurse blew in his face and he still wasn't reacting. She scooped him up and started patting him and finally got him to breathe. This happens almost every time he has an immunization! I feel so bad for him and he has to have this shot every 30 days for the next 4 months. I think Dad might take him next time!<br /><br />Next week is going to be just as busy. We have a PT evaluation at South Shore Hospital on Monday, Feeding Tuesday morning, EI Tuesday afternoon, and we're back to Children's Friday morning to see a doctor in the Complex Care/Cerebral Palsy Clinic.<br /><br />I feel bad because I don't have the time to do as much with Jadyn. She's been a real trooper and I've been trying to spend as much one on one time with her as I can... even if it means taking her grocery shopping at 8:00 on a school night! Bad mommy. I am also starting to realize how neurotic I've become. The other night I was taking Jadyn home from my parents' house. Benjamin went in one car with Ryan, and Jadyn was with me. She said "I should be next to Benjamin... he's not in this car with us and I can't tell you if he's breathing!" I didn't know whether to laugh or cry when she said that.Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com2tag:blogger.com,1999:blog-2064776817053218423.post-13360036310275907192010-10-22T22:43:00.002-04:002010-10-23T00:16:33.729-04:00October 22, 2010Yesterday was an extremely long day and we're glad it's over. Our first appointment with Neurology (the one I was dreading the most) went as well as it could have gone. We saw two neurologists and they actually thought the spasticity (rigidness) in Benjamin's legs wasn't as bad! They decided to cut back on his Clonazepam (Klonopin) because although it relaxes the muscles in his legs, it's not helping the hypotonia or low tone throughout the rest of his body. It also sedates him so hopefully now he'll have more alert time. The attending neurologist also stressed the importance of Benjamin taking the bottle and not relying on the g-tube. He said this is the age where babies lose the suck reflex and it's crucial that he maintain it. He will be sending his report with a CP diagnosis to Early Intervention so Benjamin will be guaranteed the three years of service which is good, but a reality check for us.<br /><br />After Neurology, we were off to the Pulmonary Clinic where Benjamin's pulmonologist put the fear of God into us. We're waiting for our insurance company to give the okay and schedule delivery of Benjamin's Synagis vaccine (to prevent RSV) to his pediatrician. Dr. R asked us if Benjamin has had his first dose yet and we said no. He said the minute it gets to the pediatrican's office, Benjamin has to have it. He also wrote a prescription for Benjamin to have an aerochamber spacer. Basically a fancy sounding name for an inhaler with a mask. We'll use it if Benjamin should get a cold. We also have to keep a log of his daily respiratory rate.<br /><br />The last stop of the day was the CAIR clinic (Center for Advance Intestinal Rehabilitation). I was most anxious to go to this appointment because I wanted to talk to a GI specialist to get Bejamin's reflux under control. It's getting worse and he's starting to develop an aversion to the bottle. They decided to stop his Erythromycin and told us to try additives that are vanilla flavored. They're allowing us to refrain from using the pump during the day and only give him the bottle as long as we add the calories to the milk. They want us to continually feed him overnight through the pump which I'm not thrilled about, but they think it'll help with the reflux.<br /><br />I think he's starting to associate the bottle with painful reflux. It's taking longer and longer to get the milk into him and he screams almost the entire time and then usually chokes. I'm the only one he'll take even the smallest amount from and it breaks my heart to force him to eat, but I'm persistent. It's so sad... the minute I sit down with him and he feels the bottle touch his lip, he goes crazy. It took me an hour and a half tonight to feed him an ounce. What should be an enjoyable experience for him has turned into torture. His pediatrician almost tripled his Zantac dose today and I'm praying that makes a difference. If not, we'll try to switch him from Prilosec to Prevacid.<br /><br />Thankfully our appointments at Children's will not be as frequent anymore (we'll be there once or twice a month), but Benjamin and I are going to be busy, busy, busy! EI will come and assess him next week and hopfully they'll start therapy a week or two after that. Also starting in November, Benjamin's teacher from the Perkins school will be coming out and we'll be making trips to South Shore to meet with a Feeding Specialist and get additional PT and OT. Benjamin's pediatrician and I agree that this time in Benjamin's life is so important and we need to hit the ground running!Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com2tag:blogger.com,1999:blog-2064776817053218423.post-42449842248770154632010-10-12T23:57:00.011-04:002010-10-13T10:59:10.967-04:00October 13, 2010It's hard to believe Benjamin is 7 months old. At least half a dozen times when we're at Children's for an appointment, people have asked us how old he is and we have a really hard time answering that question. I start off by saying, "well, he's 7 months." The usual reaction to that is a raised eyebrow, so then I feel as though I need to explain and I launch into the following. "He's so little because he was extremely premature. If he was born on his due date, he wouldn't even be 4 months old." Blah blah blah. I think we may just start telling people he's almost 4 months. But, that's going to get tough because developmentally he's already way behind and I'm sure within the next few months that's going to be even more detectable.<br /><br />Early Intervention will be coming out in two weeks to do an assessment and hopefully Benjamin's therapy can start shortly after that. He's showing more symptoms of the CP which is heartbreaking. He's got hypotonia, really low muscle tone, in his neck and trunk (I think that could be the reason why his breathing is so shallow) and increased tone in both his legs. We've been trying to work with him at home, but it's hard because we don't know what's most beneficial and what could possible harm him. We have him spend a lot of time on his tummy, but it's been more challenging for Benjamin because of the g-tube... I'm sure laying on a button sticking out of his stomach isn't very comfortable! He's also giving us a hard time when it comes to taking a bottle. He's stopped nursing, and now usually screams, turns red and tremors when you put the bottle in his mouth. This morning it took me almost an hour to get 55 mls into him. He likes leisurely sucking the bottle while he's in my arms and I'm walking around the house. Who would blame him for not wanting to stay in one spot after being in a hospital bed for 6 months? But jeez, the kiddo weighs over 11 pounds now and it's not easy lugging him around! But we'll do whatever it takes to get him to enjoy his bottle again. He used to do such a great job and now it seems like a chore to him. A few weeks ago I was sure we were on our way to getting rid of the g-tube and now I think he's going to have it a lot longer than we anticipated.<br /><br />I think this is the first week that we don't have to drive into Boston for a clinic appointment. It's nice for Benjamin to have a break because let me tell you, those appointments aren't necessarily quick check-ins! It's great when we can schedule more than one appt. on the same day, but it's draining. Next Thursday we see Neurology, Pulmonology and Intestinal Rehab so we'll be there from 8am until probably 4pm. Plus, every visit almost inevitably involves a trip to the lab for bloodwork. Not fun for Benjamin or his mom and dad. In a couple of years, I forsee a stop at Toys R Us on the way home from these clinic appointments!<br /><br />Aside from trecking back and forth to Boston and to Benjamin's pediatrician, we've been shut up inside the house trying to keep Benjamin healthy and both kids on some sort of schedule. We know there are a lot of people anxious to meet the little guy, but we've been told to keep everyone at bay until the winter months are behind us. We've even asked immediate family to keep visits on the shorter side because the scary part is that we can feel absolutely fine and still transmit germs to Benjamin! He will be receiving his first Synergist shot in early November. This will help prevent RSV which can be serious for babies with compromised immune systems. When we go into town, whether rain or shine, we actually keep a plastic rain cover over Benjamin's stroller. You'd be amazed at the number of people that want to stick their heads right in his face!<br /><br />I haven't been as great about updating the blog and hopefully as things get a little easier around here (if that's even possible) I'll have more time. We think it's absolutely wonderful and heart warming when people tell us they've been following Benjamin's blog. Thank you.Jackiehttp://www.blogger.com/profile/03649657361329637418noreply@blogger.com3