tag:blogger.com,1999:blog-31147321595852044762024-02-19T04:42:13.256-08:00Gage's PageShannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.comBlogger48125tag:blogger.com,1999:blog-3114732159585204476.post-18120471432923417782014-11-18T10:58:00.000-08:002014-11-18T10:58:09.350-08:00Some thoughts...Wow. It's been a long time since I've updated Gage's blog. And that's not because there isn't much to update on...the opposite in fact...a lot has gone on or changed with him but I tend to think that if you have the link to this blog then you know what's going on day to day with him and I save the updating for hospital visits or big clinic appointments.<br />
<br />
That's not what this post is about. This post is about something that's been weighing heavy on my mind for sometime now.<br />
<br />
Being a parent to any child is hard. Being a parent to a child like Gage is extraordinarily hard. Typically at the end of each day...I'm tired. If not physically...then mentally. Usually I just want to curl up in sweats and watch some mindless tv or read some stupid stuff online or on the worst days...try to sleep.<br />
I don't go out often. Kris and I almost never go out as a couple. I don't even remember our last date night. But this isn't a complaint. It's just reality.<br />
What's hard is when little by little people stop calling. Sure...I almost always say that I can't hang out but who knows...maybe somewhere there's that one time I can.<br />
What's hard is feeling alone. Seeing my circle of friends grow smaller and smaller and smaller. Very few people check in to see how Gage is doing anymore...that's family and friends. And that's hard to swallow.<br />
It hard to see pictures of friends or updates and know that they are moving on without you. Can't really blame them. You're not dead. But you're not really there anymore either.<br />
<br />
I don't know where I really fit in these days.<br />
I wish I could do a lot of things. I wish I could change a lot of things.<br />
<br />
This is my life though.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com1tag:blogger.com,1999:blog-3114732159585204476.post-44386022318346596062012-04-28T17:53:00.001-07:002012-04-28T17:53:39.791-07:00Set back...Hi all...<br />
<br />
Last night was a bad one for Gage. He had over 100 seizures and no amount of medication was stopping them. The Dr.'s put him under and intubated him...he will more than likely stay this way through the weekend.<br />
<br />
The Dr.'s are lost. No one has any idea why this is happening. None of them have ever seen this before...Gage is that rare according to one of the Dr.'s.<br />
This does not make us feel good.<br />
<br />
Gage's neurosurgeon is more than likely going to present all of this to the surgical board on Tuesday...more surgery is a very good possibility right now. He is almost sure that judging by how all of this is going that he is going to need the left half completely removed...not just disconnected. There is also a possibility that nothing is going to help.<br />
<br />
We have no idea. The Dr.'s are throwing ideas out there but everyone is completely baffled.<br />
<br />
We just don't know right now.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com3tag:blogger.com,1999:blog-3114732159585204476.post-36361089717258352012-04-27T15:30:00.000-07:002012-04-27T15:49:09.781-07:00Surgery update...Hi all...
<br />
<br />
Gage is still in PICU. Things are not going as we had hoped. Gage is still having seizures and they are the seizures that this surgery was supposed to stop...the tonic seizures involving his right side (left part of the brain controls the right side and the left half is the half that was disconnected). The Dr.'s have not figured out why this is happening so they are currently treating the symptoms by adding more medication and trying to figure out the cause. He had an MRI late this morning so hopefully the results will help them figure this out.
<br />
<br />
So far Gage has not woken up entirely. He is on a ton of medications and it's keeping him very sedated. He has a ton of tubes and lines in so it's better to keep him calm for now. Once he leaves PICU they should be able to take out some of the tubes and hopefully then he will be able to safely wake up completely.
<br />
<br />
...what else...he has been running a fever on and off since last night...it's gotten pretty high a few times. He is also on supplemental oxygen because he is so sedated that it was affecting his O2 levels. His blood pressure has been a little chaotic at times as well.
<br />
<br />
Right now our baby boy is a bit of a mess and could use all the thoughts and prayers you can send. I am home for the night with Ellie but will update after I talk to Kris.
<br />
<br />
Love Love LoveShannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com1tag:blogger.com,1999:blog-3114732159585204476.post-66563554697503476112012-04-26T18:58:00.001-07:002012-04-26T18:58:54.034-07:00Surgery...The surgery went well. Gage is doing good so far...he has a million and one tubes in right now...including a drain in his head. The staff in PICU are keeping him comfortable.
Tomorrow he will have an MRI done to make sure everything looks good...I will update after that.
Sorry this is so brief but I am exhausted. Good night!
Love Love LoveShannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com4tag:blogger.com,1999:blog-3114732159585204476.post-20711810981617715182012-04-24T14:16:00.001-07:002012-04-24T14:16:19.389-07:00Checking in...About 2 months or so ago Gage went into the hospital to have some EEG monitoring done and during the week he was there his seizures went crazy...he had so many that my husband lost count. It was apparent that the corpus callosotomy that he'd had done last year was not doing what we had hoped and in fact his seizures were worsening. His neurologist tried a few different medications while he was inpatient but none were doing enough...they would help a bit but never enough. The Dr. released him and ordered a PET scan to be done the following week on an outpatient basis. Waiting for those results was hard...his Dr. was hoping Gage would once again be a surgical candidate but it was all dependent on what the scan showed. In a few days we had our answer...there was a "spot" on the left side of his brain and the Dr. was certain that he would be a surgical candidate but we still had to wait for the board to convene to find out for sure. More waiting. It took about 2 weeks to hear back but the news was good...Gage was a definite candidate for surgery and in fact there was more than one option. Kris and I were happy but sad as well...no one wants to see their child have a surgery of any sort...even if it could help.
We met with his neurosurgeon about a month ago and our options were quickly narrowed down to just one...the hemispherectomy. This surgery won't "cure" Gage of seizures but it will lessen the amount he does have. Currently his seizures are on both sides of his brain with the left side causing about 90% and the right side about 10%...obviously the left side is the side that is going to be 'disconnected.'
Surgery is going to take place this Thursday afternoon.
I am opening this back up so I have a generalized place to update people. I don't like to do much updating via Facebook as it just doesn't seem like the right forum for it...so this is where I will do it.
Please keep all of us...especially Gage in your thoughts and prayers.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com3tag:blogger.com,1999:blog-3114732159585204476.post-73425774902243984662011-01-09T16:06:00.000-08:002011-01-09T16:13:01.864-08:00Update #2...Gage's fever is back. This is what could potentially keep him from coming home. The nurse gave him some tylenol so now we just wait to see if it's going to work.<br /><br />He also lost his last IV...it infiltrated and caused his hand and arm to swell up quite a bit. His Neurologist ( Dr. Z) had happened to stop by and she had wanted to call up transport to get another line going but thankfully the nurse was able to talk her out of it and it was agreed that if he needs rescue meds then it will be given in another way.<br />Starting IV's and drawing blood is really traumatic for him.<br /><br />Other then the fever and the IV everything is going well. I guess now we just wait and see.<br />Wait wait wait.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com3tag:blogger.com,1999:blog-3114732159585204476.post-85214010505461824942011-01-09T06:25:00.000-08:002011-01-10T20:46:20.303-08:00Update...finally...I apologize for the delay in this.<br /><br />Gage's surgery on Thursday went well. It took a bit longer then they first thought because the Anesthesiologist was having a hard time getting the lines in. Once they finally did things went very well. The hospital was pretty good about keeping us informed which was great...sitting in a waiting room and not knowing what is going on with your child is soo hard.<br /><br />There were some interesting cats in the waiting room with us...I wanted to line a few of them up and do a quick smack down.<br /><br />Anyhow...once Gage was transferred up to ICU things got a bit hairy for a short time. Kris and I explained to every single person we saw that morning that it was important to stay ahead of the pain control. Gage has a HIGH pain tolerance...it's ridiculous how high it is...once he's in pain though it's almost impossible to get it under control.<br />We told this to every nurse we saw, the Neuro. surgeon, both Anesthesiologists...EVERYONE. Did anyone listen??<br />Nope.<br />We got up to the room and poor Gage was a wreck.<br />He had so many tubes and a drain in his head and he was hurting and confused and SO upset. It broke my heart and really upset us that no one listened to us.<br />It took 2 doses of Morphine to get him calm.<br />I felt bad for the ICU nurse as it was not her fault at all and she had to deal with two very angry parents...she was amazing about it though. Very patient and understanding and went right to work figuring out how best to get him calm again.<br />Thanks Monica!!<br /><br />Gage had a CT scan later that afternoon to make sure there was no fluid on the brain and aside from the craziness of getting him hooked and unhooked from all of the tubes it went well. The scan was clear.<br /><br />Gage was pretty agitated the first night but they gave him a medication that helped calm him down. Kris stayed with him and I went home to be with Ellie.<br /><br />The agitation stayed with him for all of the second day. Kris apparently spent the day by his bed trying to keep him from pulling out the lines.<br />Kris had another great nurse...this time a friend of my brother's. Hi Ginna!<br />He said she did really well and stayed on top of things with Gage. We really appreciate that.<br />Gage had an MRI done that day to make sure the Corpus Callosotomy was complete...it is :)<br /><br />Around 10pm the second night Gage was transferred out of ICU and onto EMU. This was both good and bad...it was good that he was doing so well that he was able to be transferred but bad because the awesome care was gone and he was no longer able to get the medication for his agitation (it's only given on the ICU because the patient needs to be monitored so closely).<br /><br />The 3rd day things got a bit hectic. Gage started to run a pretty good fever and was also an itchy mess from all of the morphine. Benadryl and tylenol were started and he was pulled off the morphine. By this point his pain was pretty well controlled with IV Ibuprofen.<br />The fever has been up and down but is hovering right around 99.1-99.5. His Neurologist isn't too concerned. She threw around some big, scary words as for the cause of it but isn't worried. Kris and I are just making sure the tylenol is given regularly.<br />This has been a little bit difficult as weekend nursing on EMU is a bit...lacking. They've been very nice but a bit...complacent.<br />We've got it handled though.<br /><br />I think that's where we are now. Kris went home to be with Ellie last night and I've been here.<br />That's been one of the hardest parts of this...we both feel so torn. BOTH kids need us and we want to be with BOTH of them.<br />We're getting through ok though...we've got lots of help :)<br /><br />I apologize if this update is a bit all over the place...I am very tired right now.<br /><br />ETA: UPDATE...His temperature is finally normal!!!!!Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com3tag:blogger.com,1999:blog-3114732159585204476.post-8854526699566285992010-11-05T07:31:00.000-07:002010-11-05T07:49:35.495-07:00Update...Hello and welcome back.<br />I have taken such a long, long break with this blog that I thought about scrapping it altogether and (possibly) starting a new one sometime down the line but for now I'm just going to update here.<br /><br />I don't think I'm going to go through everything that has gone on in the past 2 years because I'm just going to go ahead and assume that if you actually read this then you probably already know...so let's just go ahead with what's going on now...<br /><br />Gage just got out of the hospital yesterday. He was in for EEG monitoring so his <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Neuro</span>. could see what's going on with his seizure patterns. Daddy stayed up there with him and I stayed home with the little lady since her and I both have colds.<br />That was hard. I am always with him during hospital stays. I missed him terribly but I know Kris was just as good an advocate (maybe even better...he stresses less) as me.<br /><br />The results of the stay are this...we are going forward with the <a href="http://www.webmd.com/epilepsy/corpus-callosotomy">Corpus <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Callosotomy</span></a>.<br />The plan is to meet with the surgeon as soon as we can and get this ball rolling. His Dr. also wants to place <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">Leeds</span> directly on his brain following the surgery to see if we can pinpoint a direct region of seizure activity...if we can then the plan is to <span class="blsp-spelling-error" id="SPELLING_ERROR_3">resect</span> that portion of his brain.<br /><br />Kris and I feel pretty <span class="blsp-spelling-error" id="SPELLING_ERROR_4">ok</span> with this plan.<br /><br />We trust his Dr. and know that she is doing what is necessary.<br />His Dr. is wonderful...we adore her and couldn't be happier with her.<br />His Dr. is also leaving the practice.<br /><br />Yeah.<br /><br />She is moving to California to set up there. Great timing.<br />We will be switching over Gage's care back to his previous <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Neuro</span>.<br />We loved him and he was great with kids and it was an <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">unfortunate</span> set of circumstances that led us to a new Dr. in the first place.<br />Thankfully he practices in the same location so none of that will change.<br /><br />There is more to update but I think I'm going to stop for now. I'm still letting everything sink in myself.<br /><br />Love to you all.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com2tag:blogger.com,1999:blog-3114732159585204476.post-34757427363125921392009-01-18T17:47:00.000-08:002009-01-18T18:10:16.745-08:00update...finally.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i19.photobucket.com/albums/b172/hedfam/12.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 640px; height: 480px;" src="http://i19.photobucket.com/albums/b172/hedfam/12.jpg" alt="" border="0" /></a><br /><br /><br />My mom reminded me today that I haven't been doing a very good job updating this and for that I apologize...time has just gotten away from me.<br /><br />Anyhow...we all had a good Christmas. As usual Gage made out well...lots and lots of new clothes and a new bookcase for his room. Daddy and I had given him his gift early but Santa brought him some new fleece blankets and flannel sheets and some other odds and end.<br />I spent Christmas day sick and in bed at my moms but everyone else had a very good day. It's always nice to spend time with family...especially when you have such a good one.<br /><br />Gage is doing very well at school this year. I love his teacher...she is so sweet and so good with him and I just get a very good feeling from her. I fully believe that she loves what she does and that she loves her students...how can you not though??<br /><br />I guess the biggest news with us right now is Gage's upcoming neurology appointment. The ketogenic diet is not working and I think the consensus is that it's time to consider doing the <a href="http://www.webmd.com/epilepsy/corpus-callosotomy">corpus callosotomy. </a>Kris is 100% on board with this and I am becoming a bit more comfortable...I'm not going to lie I do have some reservations...but I think that's probably normal.<br />I do know that we are running out of options as far as seizure control goes. We've been through all of the medications and he's had the VNS in since 2004...the keto was pretty much our last option before we talked about surgery.<br />Gage's neuro. raised his keto. from 3:1 to 4:1 in November in hopes that it would help...it hasn't. Our appointment is in a couple of weeks and from there we will schedule the surgery.<br />I pray that this works for him.<br /><br />He is due for a break...we all are.<br /><br />I think that is all for now...I'm sure I could find more to say but I think I want to publish this now before I get busy and let another 2 months go by.<br /><br />I hope you are all well.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com1tag:blogger.com,1999:blog-3114732159585204476.post-86139508023888298372008-11-13T18:43:00.000-08:002008-11-17T06:55:34.143-08:00Childrite...We got Gage's Christmas present in the mail today!!! After reading another blog and seeing their daughter in the <a href="http://www.childrite.com/">childrite</a> seat I immediately started reading the testimonials on it and knew we had to get it for Gage.<br />It's pretty much a glorified <a href="http://www.bumbobabyseat.com/">Bumbo</a> ...a much pricier Bumbo but everything labeled "special needs" or "adaptive" comes with a hefty price tag...we all know that...but we said forget it and ordered it anyway.<br />I am sooo happy we did!!<br />We couldn't wait until Christmas to give it to him...why would we?? It's something that can benefit him and make him more comfortable TODAY...so today it was.<br /><br />He did incredible in it!! I actually could have cried seeing him sitting up...he looked so proud and so content.<br /><br />I totally recommend it to anyone with a special needs child that needs a bit of help sitting up.<br />Best investment ever.<br /><br />I have pictures of him in it but I can't seem to locate my cord...I'm wondering if the cat has wondered off with it. HaHaShannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com4tag:blogger.com,1999:blog-3114732159585204476.post-22818414040536734662008-11-10T18:44:00.001-08:002008-11-10T18:57:50.144-08:00So Sweet...<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5-gIDT0bi6fEffk96oSgjWgeZIEDpqStFQ-UGr-Mhs1K8c5QkXzNHqStgMC-G6smJMSKDx7hdMGqSpzyR3ka10zHscCbL_LeG-XRJxjdRRCGZC1dtxzBd_ymcUHnhCq0ZZYIxO8_4yWg/s1600-h/uberamazingblog.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 220px; height: 203px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5-gIDT0bi6fEffk96oSgjWgeZIEDpqStFQ-UGr-Mhs1K8c5QkXzNHqStgMC-G6smJMSKDx7hdMGqSpzyR3ka10zHscCbL_LeG-XRJxjdRRCGZC1dtxzBd_ymcUHnhCq0ZZYIxO8_4yWg/s400/uberamazingblog.jpg" alt="" id="BLOGGER_PHOTO_ID_5267210320691383778" border="0" /></a><br />Jenny from <a href="http://yennysworld.blogspot.com/">and she's rambling again</a> nominated me for this. What a sweetheart!!!<br />She is getting married in May and she's started her blog to document it all (wish I had done that. lol)...I LOVE her blog...she's so cute and funny and she sometimes posts really yummy recipes that I can't wait to try.<br />I actually went to high school with her fiance and I couldn't be happier for the two of them!!<br />Thanks Jenny!!<br /><br />Here are the rules for this...<br /><br />The Uber (AKA Super) Amazing Blog Award is a blog award given to sites who:<br />-Inspire you<br />-Make you smile and laugh<br />-Or maybe gives amazing information<br />-A great read<br />-Has an amazing design<br />-And any other reason you can think of that makes them uber amazing!<br /><br />The rules of the award are:<br />-Put the logo on your blog or post<br />-Nominate a minimum of 5 blogs<br />-Let them know they received this award by commenting on their blog<br />-Share the love and link to this post and the person you received your award from<br /><br />so the 5 blogs I nominate are...<br /><br /><a href="http://www.lilyannablu.blogspot.com/">Lily's mom</a>...she is such an amazing mom and her daughter is just awesome. One of my favorite blogs!!! And she is the reason I started this blog..I stumbled upon her first blog that she kept for Lily and I was hooked and inspired and I can't thank her enough for it.<br /><a href="http://www.fourtimesthefun.blogspot.com/">4 x the fun</a>...this mom is HILARIOUS!! She does updates daily and her blog is what I read every morning with my coffee.<br /><a href="http://micropreemietwins.blogspot.com/">Holland and Eden's mom</a>...LOVE, LOVE, LOVE this blog!! Billie is such a great mom and her daughter's are sure to make you smile.<br /><a href="http://kristinandlogan.blogspot.com/"><span style="text-decoration: underline;">Tall Oaks from Little Acorns Grow</span></a><a href="http://kristinandlogan.blogspot.com/"> </a>a newer blog to me that I really enjoy reading...she has two sons that are so cute and I really like her writing style.<br /><a href="http://sweetenedtaters.blogspot.com/">Sweetened*taters</a>...this momma has identical triplet girls...who btw are BEYOND adorable...her blog is honest and funny and another one I check each day with my morning coffee.<br /><br />These 5 blogs are only a very small amount of the bloggo's I have bookmarked. I am a self admitted blog-a-holic. I'm not big into the gossip blogs but I sure do love to read the real one's about real people and real families....not saying famous people aren't real but you know what I mean.<br /><br />Anyhow...I really recommend checking all of them out...all 6 of them.<br /><br />Jenny~ thank again for thinking of me and my blog. You are such a sweetheart.<br /><br />Next up...an update. I promise.<br />There has been a lot plus I am really excited to talk about what we're doing for Gage for Christmas...for the first time I really feel good about what he's getting.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com5tag:blogger.com,1999:blog-3114732159585204476.post-23586326236989165162008-09-28T13:20:00.000-07:002008-09-28T13:31:12.409-07:00Seizures, seizures, and more seizures....Well Gage has been on the ketogenic diet long enough that if it was going to work I think we'd know it by now...sadly I don't think it's going to do it.<br /><br />In the beginning I was hopeful but if anything his seizures have worsened. I don't think it's the diet causing them to worsen...I think it's just the progress of the syndrome. I don't really know if he's having more of them but they have definitely changed and seem to be a lot harder on him. He's actually had moments where he just cries and cries afterwards.<br />It's so heartbreaking.<br /><br />I want to talk to Dr. Z about trying lamictal again. We tried it once along with the dilantin but one of them caused him to breakout in a rash...we don't know which one it was though...and I'd like to try the lamictal by itself and see how it goes. Hopefully they'd check him into the hospital if they agreed to try it so if he did have a reaction to it we could quickly get it taken care of.<br /><br />I just don't think the felbatol/depakote combination is working anymore and I'm ready to move on and try something new.<br /><br />Have any of you had any luck with lamictal??? I'm also curious about vigabatrine...I've heard it mentioned quite a bit in another blog but it's my understanding that it's not sold in the US.<br /><br />Anyhow...Gage still hasn't started school yet...the ramp in just about complete though so I'm thinking possibly next week. I'm just hoping this school works out. I'm not going to lie...I have some reservations about it.<br />His last school was just so wonderful and I'm really doubting that I'm going to be as comfortable with him at the new one.<br /><br />We shall see though....Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com2tag:blogger.com,1999:blog-3114732159585204476.post-88721835786036675432008-09-09T22:21:00.000-07:002008-09-09T22:28:59.302-07:00Surgery...Gage had his surgery Monday at Children's and all went well.<br />The Dr. was a bit shocked at the level of his prolapse...at one point she called it "the mother of all..."<br />Anyhow...because the prolapse was so big it left him with a much bigger hole than he should of had so she had to stitch it up on the inside and the outside.<br />Poor guy. Nothing is ever easy for him.<br /><br />Because of the extent they ended up keeping him over night so they could make sure he took his feeds and medicine well. He did GREAT!!<br /><br />I made sure to stay on top of the nurses with his pain medicine...Gage has such a high tolerance for pain that by the time he's crying and really showing his discomfort it's too late and can take a long time to get him calm again.<br />I was really pleased that they listened to me on it and for the most part were really good about giving him medicine every 3 hours and aside from a brief moment today he did awesome.<br />I am so proud of him.<br />After each surgery or procedure I realize just how strong and what a fighter he is.<br /><br />We're home now and exhausted so I apologize for the shortness of this...I just wanted to update everyone.<br /><br />XOXOShannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com1tag:blogger.com,1999:blog-3114732159585204476.post-28795606163607696372008-09-05T12:15:00.001-07:002008-09-05T12:20:35.746-07:00Picture post...We got these done a couple months ago for my mother in-laws 60th birthday.<br />Enjoy...<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_9.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px;" src="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_9.jpg" alt="" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_8.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px;" src="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_8.jpg" alt="" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_5.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px;" src="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_5.jpg" alt="" border="0" /></a>I love this one of Gagey...if you look close you can see Aunt Jenny's hand.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_6.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px;" src="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_6.jpg" alt="" border="0" /></a>Sweet picture of Gage and his cousin Rinoa.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_12.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px;" src="http://i19.photobucket.com/albums/b172/hedfam/s42342ca112592_12.jpg" alt="" border="0" /></a>And my handsome boy.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com0tag:blogger.com,1999:blog-3114732159585204476.post-81475811746375534382008-09-04T08:38:00.001-07:002008-09-04T08:44:40.156-07:00Heavy heart...Hi Everyone...<br /><br />I just wanted to let you know that Gage is scheduled for surgery on Monday to repair the prolapse. I'm hopeful that they will be able to repair it without having to actually redo it. Yesterday morning he popped out his g-tube for me and when putting a new one in I got to see just how bad the prolapse is. I'm so happy the surgery is in less than a week.<br /><br />I'm in a bit of a sad mood today...just having a hard time with all the sickness in kids. One family on my myspace list has their 3 year old special needs son in ICU with pneumonia. He spent his birthday their. My heart hurts for this family.<br /><br />An old friend of mine just had a baby girl a couple of weeks ago and she is in the hospital with a rare heart defect and a lung defect fighting for her life. Again, my heart hurts.<br /><br />It doesn't make sense. Kids shouldn't haven't to go through things like this. Parent's shouldn't have to see their babies suffer.<br />But yet it's all around us.<br /><br />I don't really have much more to add right now...maybe later.<br />Take care.<br />Shannon.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com1tag:blogger.com,1999:blog-3114732159585204476.post-87797786917762364762008-08-09T12:26:00.000-07:002008-08-09T12:31:52.300-07:00Crazy people...<span style="font-size:100%;"><span style="font-family: arial;">After reading the latest post over at </span><a style="font-family: arial;" href="http://micropreemietwins.blogspot.com/">Holland and Eden's</a><span style="font-family: arial;"> blog I have decided to disable the right click function from this blog...basically this means that no one can save pictures of Gage to their computer.</span><br /><br /><span style="font-family: arial;">There's far too many weirdo's out there.</span><br /><br /><span style="font-family: arial;">Scary, scary stuff.</span></span>Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com1tag:blogger.com,1999:blog-3114732159585204476.post-8845935996056224222008-08-07T21:22:00.000-07:002008-08-07T21:49:18.415-07:00Way overdue update...<span style="font-size:100%;"><span style="font-family: arial;">Oh my goodness...it has been FOREVER since I've updated!!!</span><br /><br /><span style="font-family: arial;">I've felt really guilty about i and was going to use the "I took the summer off" bit as an excuse but the truth is that I went WAY too long and felt a bit overwhelmed and wasn't even sure where to begin on the update.</span><br /><span style="font-family: arial;">I am a slacker. lol</span><br /><br /><span style="font-family: arial;">I do have a ton to update you all on though and I will start with the house...we moved in finally at the end of June and we're loving it!!</span><br /><span style="font-family: arial;">Everything turned out awesome. I have quite a few before and after pictures of the house and I will get them up sooner or later...I figured I'd get this done and then work on a picture post another day.</span><br /><span style="font-family: arial;">Anyhow...all the stress (my end) and hard work (everyone's end) was so well worth it. I still find myself waking up and looking around in disbelief that we actually live here. I feel blessed beyond belief.</span><br /><span style="font-family: arial;">And yes it is true that we are now (transplanted) cheeseheads. haha</span><br /><br /><span style="font-family: arial;">In other news...Gage had a few appointments at Children's last week.<br /><br /></span><span style="font-family: arial;">First we saw the eye clinic and while we were there they confirmed what Kris and I suspected...Gage does have <a href="http://en.wikipedia.org/wiki/Cortical_visual_impairment">CVI</a> (cortical vision impairment)...the basic gist is that he has everything he needs to see but somehow the signals get lost on the way to the brain. The Dr. did say that his eyes react (sluggishly) to light but that seems to be about all he reacts too. The Dr. said that he considers Gage to be blind.</span><br /><br /><span style="font-family: arial;">Kris and I have thought this for a long time and hearing it was bittersweet. One one hand we are happy to know for sure because it may change the way therapies are done...and it's just nice to not wonder anymore.</span><br /><span style="font-family: arial;">BUT...I'm not going to lie...actually hearing it was a bit hard. Obviously you always hope for the best news.</span><br /><span style="font-family: arial;">The not knowing on anything is a blessing and a curse for me but in the end I do feel a bit relieved to know for sure. </span><br /><span style="font-family: arial;">I just keep telling myself that this can only work in his favor.</span><br /><br /><span style="font-family: arial;">After the eye clinic we met with the surgeon about his prolapse. The nurse was in first and she told us that most of the time a prolapse actually turns out to be granulation tissue and that GI is a bit too quick to give the prolapse diagnosis...I think she was a bit surprised to see his G-tube sight...there is no question that it is indeed a prolapse.</span><br /><span style="font-family: arial;"><br />Gage is going to have surgery to have it removed. We're not sure just when yet because Kris needs to clear it with work but we have a few prospective dates for this month or the first week in September.</span><br /><br /><span style="font-family: arial;">After the surgeon we saw GI for a checkup. It seems Gage-o has lost just about a kilo and a half since starting the keto diet so we're going to have to up his calorie intake but otherwise the appointment went well.</span><br /><br /><span style="font-family: arial;">As for the keto diet...we're not for sure that it's helping but I think our instinct says that it just may be.<br /><br /></span><span style="font-family: arial;">I'm still keeping my fingers crossed that this will work for him and that he will be able to come off some of the medicine.</span><br /><br />WOO!!<br /><br /><span style="font-family: arial;">I think I've covered most of the happenings...I know I kind of rushed through each thing but it's late and there was a lot to cover.</span><br /><span style="font-family: arial;">If you want me to go more in depth in anything just let me know and I will happy too!!</span><br /><br /><span style="font-family: arial;">And on that note I think I'm ready for bed!!<br />Have a good one!!<br /></span><br /><span style="font-family: arial;">P.S. I will try to get up the pictures of the house in the next couple of days (if blogger lets me. lol)</span><br /></span>Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com2tag:blogger.com,1999:blog-3114732159585204476.post-87599440864539954922008-06-11T09:31:00.000-07:002008-06-11T09:42:14.542-07:00Dr.'s appointment...<span style="font-family: arial;">Kris and I took Gage to the neurologist for a follow up on Monday. It was an alright appointment...definitely not the best we've ever had but by no means the worst.</span><br /><br /><span style="font-family: arial;">The basic gist of it is this....</span><br /><span style="font-family: arial;"><br />We're going to keep Gage on the ketogenic diet for at least 3 more months in hopes that his body will adjust to it and it will start to have positive affect. As of now it hasn't been working and in fact his seizures have been a bit worse but the Dr. didn't seem overly concerned by it.</span><br /><br /><span style="font-family: arial;">We have also put Gage back on melatonin at night to help with sleep. It didn't really work very well before but we're going to humor the Dr. and give it another go...if it doesn't work then we're going to try something else. </span><br /><span style="font-family: arial;">According to the last EEG Gage is almost never in a normal sleep pattern...he doesn't enter REM state...he more or less naps. This is caused by his seizures and the lack of sleep is actually causing seizures....it's a vicious cycle.</span><br /><span style="font-family: arial;">If neither the melatonin or the sedative have much affect then we're going to eventually back off a bit on the felbatol.</span><br /><span style="font-family: arial;">As for now we just wait and see.</span><br /><br /><span style="font-family: arial;">The biggest area of concern though was Gage's G-tube site. Dr. Z called G-I down to take a look at it because Kris and I (and her) were concerned about the amount of granulation tissue he had accumulated in such a short time....guess what?? It's not granulation this time...it's a prolapse. I'm currently waiting on a call back from Tara (his nurse case manager) for an appointment with the surgeon.</span><br /><span style="font-family: arial;">It's always something for my poor baby.</span><br /><br /><span style="font-family: arial;">In other (happier) news...the house is just about done!!!!!</span><br /><span style="font-family: arial;">Kris and I can't wait for Gage to see his new room!! I will eventually get pictures of the house up on here for you all to see.</span><br /><span style="font-family: arial;">His room is just amazing. It's bright and colorful and just plain awesome. </span><br /><br /><span style="font-family: arial;">Well time for me to get the kiddo hooked up for another feed.</span><br /><span style="font-family: arial;">Until next time...take care.</span><br /><span style="font-family: arial;">Shannon</span>Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com3tag:blogger.com,1999:blog-3114732159585204476.post-46760467784359554532008-05-28T20:01:00.000-07:002008-05-28T20:13:09.215-07:00Hardest part about being his mommy....For the last couple of days Gage has been a bit whinier than usual...actually him being whiny at all is odd. I haven't been overly concerned with it...just figured he was having an off few days. We all have those...right??<br />Tonight though was rough....after his bath and his night time feeding I got him all tucked into bed and all was well..for about 15 minutes...and then the crying started.<br />REAL crying...lots of tears.<br />HARD crying...the kind where it's hard to catch your breath.<br /><br />I have no idea what prompted it. I don't know if he was scared or if something hurts. I just have no idea....and that is the hardest part.<br />I worry all the time that I wouldn't know if something was seriously up with him.<br />It scares me that I may miss something.<br /><br />I really, really hate moments like this.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com2tag:blogger.com,1999:blog-3114732159585204476.post-78631101052926991442008-05-28T15:39:00.000-07:002008-05-28T15:44:35.828-07:00Good luck with that!!Yesterday Dependicare (or I like to call them...Dependi-not-care) finally made it to the house with Gage's keto-cal and the super swell delivery guy informed me that he "would need the actual patient to sign for this."<br /><br />I could barely keep a straight face...I sort of flipped my thumb towards Gage and said "good luck with that."<br /><br />Come on....seriously??<br />Seriously???<br /><br />He could see Gage hooked up to the pump so obviously he knew who the "patient" was...he just wanted to be a jerk I think.<br /><br />Takes all kinds I suppose.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com0tag:blogger.com,1999:blog-3114732159585204476.post-59897845322398988522008-05-20T17:59:00.001-07:002008-05-20T17:59:40.710-07:00To my sisters...To You, My Sisters (and Brothers!)<br />by Maureen K. Higgins<br /><br />Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."<br /><br />Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.<br />We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.<br /><br />We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.<br /><br />We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.<br />We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.<br /><br />We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.<br />We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.<br /><br />We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.<br /><br />We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.<br />And we've mourned because we left for the airport without most of the things we needed for the trip.<br /><br />But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.<br /><br />But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com1tag:blogger.com,1999:blog-3114732159585204476.post-44521152120405613112008-05-15T10:58:00.000-07:002008-05-15T11:11:08.920-07:00Nothing is ever easy...There are times where I find myself so frustrated with things...not Gage...just things. Today is definitely one of those times.<br />I've been making phone calls all morning to try and find out information on wheelchair ramps as we need one for the house...aside from one place that is out of funding for the year I can't find any place that either helps fund the ramp or covers it altogether. It's ridiculous.<br />I am just so irritated with the world right now. Not only do Kris and I have the daily "battles" with Gage...seizures, paying for medicine, Dr.'s appts. etc....but we also have the joy of trying to figure out how to pay for things like wheelchair ramps and seats for him inside the house.<br />How is it that there is only one place that helps with that???<br />Why is it so easy to get on welfare and food stamps but so damn hard to find help for disabled children?? Where are the priorities??<br />Families on welfare for the most part have a choice of whether to work or not work and they have the luxury of changing their situation but families with special needs children don't have that choice....we cannot wake up one day and decide that we're going to change our child's situation.<br /><br />Do you guys realize that I have to sit at home most of the time with Gage because we cannot afford to pay for a wheelchair that I can lift into the car?? The one we have now is great for the school bus but I cannot lift it.<br />I've accepted that though.<br />But to find out that it's going to cost thousands of dollars for wheelchair ramp just so my child can get out of the front door??? I WILL NOT ACCEPT THAT.<br />I CAN'T accept that.<br /><br />But I don't know what I'm going to do.<br />I am so beyond frustrated and sad over this.<br /><br />Why does it all have to be so hard???Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com5tag:blogger.com,1999:blog-3114732159585204476.post-57412391974373359902008-05-11T14:16:00.000-07:002008-05-11T14:21:15.076-07:00Happy Mothers Day!!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://i19.photobucket.com/albums/b172/hedfam/MothersDay.gif"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px;" src="http://i19.photobucket.com/albums/b172/hedfam/MothersDay.gif" alt="" border="0" /></a><br />I hope you all have a WONDERFUL day!!<br />XOXOShannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com1tag:blogger.com,1999:blog-3114732159585204476.post-8003053862534649952008-05-09T10:06:00.000-07:002008-05-09T10:16:44.466-07:00Thoughts...Lately I've found myself getting caught up in debates on prenatal testing and parents that either chose to abort or chose to keep and it's funny but it seems that people have a harder time understand WHY a parent would want to keep a child that has some sort of "defect" (I don't like describing it like that)...and it's led me to wonder how I would have reacted if I had known before hand about my own Gagey's health.<br />Would I have kept him??<br />Would I have decided that I couldn't handle it and opted to abort??<br />It scares me to think about a life where I had never known Gage.<br />I don't think I would be half the person I am if I had never had the privilage of being his mommy and I don't think Kris would be either. We've both grown so much in the 6 years since we were blessed with him.<br />I honestly do think we were chosen to be his mommy and daddy and that there is a reason for it. He was given to us.<br /><br />I know a lot of people can't understand that way of thinking because when they see a child like him all they see is his disabilities and the work it takes to parent him. They don't always see past that and see what a blessing he is.<br /><br />But on the flipside...if Kris and I have more children we've both decided to go ahead with prenatal testing. Obviously our hopes are for a healthy child but if the child is not healthy would we be strong enough to parent that child as well??<br />So much to think about....Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com1tag:blogger.com,1999:blog-3114732159585204476.post-7730585860395011802008-05-08T19:32:00.000-07:002008-05-08T19:37:35.004-07:00Not QUITE what I meant...<span style="font-family: arial;">I've found the best way to prepare Gage's new formula is to mix it up the night before and distribute it between 4 baby bottles.<br />He gets 3 bottles filled to 250ml. and 1 filled to 122ml.</span><br /><span style="font-family: arial;">The bottles work perfect because they have the markers on it that I need it and I can dump it easily into his feed bags.</span><br /><span style="font-family: arial;"><br />Anyhow...I've had MAJOR baby fever for awhile now. I spend a lot of time thinking about future children and all that goes along with it and tonight it hit me...this is pretty much what I would be doing if I had another baby. Fixing bottles and washing bottles and what have you (at least some of the feeding end of it).</span><br /><span style="font-family: arial;">It's not quite what I meant when I said I wanted more children but I suppose this with tide me over.</span><br /><span style="font-family: arial;">HAHAHA.</span><br /><span style="font-family: arial;">Just had to share that. :)</span>Shannonhttp://www.blogger.com/profile/07529657944572717564noreply@blogger.com3