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Tuesday, March 10, 2009 3:47 PM CDT

Hello!

******NEW PHOTOS ON PHOTO PAGE!!!*****

Well, Alex continues to heal. His back looks great & is completely healed. Now if I could just say the same thing for that darned right leg. Alex is continuing to need the walker to get around. He was molded for a new leg brace for that leg a couple of weeks ago, and when I called today to Gillette's in Minnetonka to check the status of the brace, I discovered that Alex had an appointment this morning for the fitting, and we missed it. That totally stinks, as today was a late start day for Alex at school, so we would have had plenty of time to do it. But, if an appointment doesn't get written in my planner, we don't make it! I don't know what I'd do without that thing. If I lost it, I'd be COMPLETELY lost! So I've rescheduled it for March 17, but we have to go to the Maple Grove Gillette's. That's not too far, and the appt. is at 9:30, so hopefully the traffic will have died down by then. We've all been keeping busy! Last week, on Thurs., Alex & I went to a play w/Hope Kids at Stages Theatre in Hopkins to see "How Can You Run With a Shell on Your Back?", which was based on Aesop's Fables. It was pretty good, though some of the singing made the fillings in my teeth rattle!! Just this past Saturday, Alex & I went ice fishing for the first time! I was a bit reluctant since I basically hate winter, but we had "nice" weather, somewhere around 30 degrees, with no rain or snow or sleet. The wind picked up thru the morning, which made it "brisk", but we still had a great time! Alex caught 8 fish!! All of them were sunnies, and 4 of them were keepers! This was a Hope Kids event as well, and it was sponsered and run by a group called "Ice Team". There were a bunch of their own staff, as well as a bunch of fishing guys from Gander Mountain that volunteered to help all of the kids with baiting, fishing, etc. We really did have a great time! Alex asked if we could go fishing again, though he asked if it could be in the summer instead! :) That's my boy! One of the guys was nice enough to filet (sp?) them for us & he dropped them by later that day. I coated the fish in pancake mix, fried them in butter & served them up to Alex that night for dinner!! There was really only enough for him---our sunnies weren't huge!---and he just wolfed them down! "Ice Team" provided all of the fishing rods, bait, etc. for the kids, and they got to keep them too! They even gave us a rod for Max! I'm looking forward to fishing this summer!
My Dad's prostate cancer surgery is this Friday, 3/13, and I will be driving down to Shenandoah on my own on Thursday, 3/12. My brother Brian is coming up to Shen. from Kansas City that day as well, and he will be driving us all up to Omaha that same day, as Dad's surgery is at 7:15am on Friday. We'll be staying in a hotel in Omaha while Dad's in the hospital. I have to come back up here on Sunday though, as Jorge can't take more than those couple days off of work. Please keep my Dad in your prayers this week, especially Friday, and afterwards too, for a speedy recovery.
Hope you're all well!
Love,
Amy

Tuesday, February 10, 2009 3:17 PM CST

My goodness, how time flies!!!! Does that mean I'm/we're having fun???? Sometimes! Other times we're just so darned busy, the days get away from us...
Well, Alex DID get to go bowling back in January, the day after I updated last, and he had a BLAST!!! But he was definitely worn out the rest of the day. Alex has been doing great! He's back at school now, full-time, and we're no longer needing Katelyn to be his PCA, much to the dismay of Alex! Alex loves Katelyn so much--so much that sometimes he's in tears due to missing her being around all the time. It breaks my heart to see him cry, but I just remind him that she's still one of our babysitters and that he'll definitely be seeing her again! Alex is using his walker again to get around. He can't use the leg brace he'd been using, as it no longer fits due to that darned contraction of his right knee. I need to call Gillette's & get Alex scheduled for a fitting for a new brace again. I have a feeling we'll need to do this pretty regularly, as the contraction is not getting any better. I hate that thing! I think Alex's life would be so much easier if that right knee/leg worked right!!! I think that someday, when Alex is old enough to decide, that the option of amputating his leg above that right knee & getting a prosthetic leg would be the best possible thing for Alex. But that's a ways away, and I'm getting ahead of myself. It's just very frustrating to see him struggle with that leg all the time!!!!..........
I've been trying to work in a lot of fun stuff for us to do with Alex or with both the boys. It's no fun if it's constantly medical this, medical that! :) A couple of weeks ago I took the boys--with the assistance of Katelyn & a friend of hers!--to "Rock the Cradle", a very fun event through The Current-part of MN Public Radio, as well as the Minneapolis Institute of Arts & the Children's Theatre Company. They had a "musical petting zoo" where the boys got to try out different instruments; live musical performances; a kids disco dj'd by The Current's aweseome dj's!---the boys were so pooped at that point that I was the only one dancing!! Max wanted to dance but was too tired, so I had to hold him the entire time! Overall, we had a blast! I've been taking Max to storytime each Thursday at Creative Kidstuff (a really fun toy store!), which he really loves! They always have a craft for the kids to do afterwards, and last week Max made a Valentine for Alex! I'd also won tickets to go see the MN Orchestra perform at Orchestra Hall in Mpls., so Jorge, Alex & I went to that--it was a sort of musical history of Leonard Bernstein, who did the music to such movie greats as "West Side Story"! Leonard Bernstein's daughter hosted the event, so it was really cool to hear about her Dad from her perspective growing up! It was an AWESOME event! Alex & I went to see "The Gruffalo" at the Children's Theatre Company last Sunday & had a blast! It was a really interactive play & it was fun to hear all of the kids hollering back to "mouse" in the play! I'm thinking that Max would actually really enjoy it too, so I'm going to look into tix for the 2 of us to go one of these afternoons! The play is quite short, with no intermission, and I think that Max would do just fine! I'm a brave one, aren't I? :) This Thurs.-Saturday is the KS95 for Kids Radiothon (www.ks95forkids.org), which Alex was a featured child on last year, and I will be working the phones on Saturday from 1:30-6pm at Southdale Center in Edina. The money raised goes to Gillette Children's Specialty Healthcare (Alex has his VEPTR surgeries at Gillette's every 6 months) and the Children's Miracle Network. It's a great cause, so if you can, make a donation! You can either go online at the website I put above, or you can call it in starting Thursday. If you call on Saturday, I may even be the one answering your call! :) I believe you can also mention Alex in your donation if you want to! You can still read Alex's story & hear his interview from last year by going to this address: http://www.ks95forkids.org/2008_stories.html
Sorry that links don't work in the journal area, but I will add this to the links on Alex's home page. You can also still see Alex's TV commercial at www.curepity.org! They also have his "story" on there & they will be adding some of the still shots of Alex that they will be using in print ads & billboard ads! I'll put this in the "links" section too!
Coming up, Alex has a fieldtrip next Thursday with his class to the U of MN Landscape Arboretum, and I plan on going with him to that. It's a really cool, tropical-ish place, which is AWESOME during these cold winter days!! On 2/25, Alex has his first post-op follow-up appointment with Dr. Perra, his spine surgeon. Hopefully all of the hooks, rods, etc. are still where they are supposed to be. If not, it means more surgery, which, for lack of a better word, would SUCK. Please send good thoughts & prayers out for him on that day!
Unfortunately, not everything is fun-n-games. A week ago today, my Dad was diagnosed with prostate cancer. It appears to be in the early stages, and my Dad is scheduled for surgery to remove the tumors on 3/13, which happens to be a Friday the 13th. Please please PLEASE send lots of good thoughts & prayers our way for my Dad!!! Today he had a CAT scan & bone scan to make sure the cancer has not spread. Hopefully he will have clear results on those tests in a couple of days. OK, I need to go meet Alex's bus soon, so I'd better go. I hope you're all well!
Love,
Amy

Sunday, January 18, 2009 9:02 PM CST

****NEW PIX ON THE VIEW PHOTOS PAGE!****

Ok, so maybe I wasn't able to update every day...but here I am now! Alex keeps on truckin' in the recovery department. He's had UP days and DOWN days, but mostly UP! Thursday was a rough one for him, but I believe that's because Wed. was so great & he was so active! He's been walking more & more with the walker, which is AWESOME! And Wed. he was being his goofball self & being silly. So Thurs. then he had a LOT more pain than he had been having. I believe it was mostly those muscles responding to finally being used again! :) By Friday, the pain wasn't as bad once again. We even took him to school for a little bit! I had called his teacher, Mrs. Dewhirst, to find out a good time to come, so at 2:30 we arrived, Katelyn & Max in tow! The kids didn't know, and it was really cool--as we quietly & SLOWLY walked down the hall to his classroom (YES! He walked the whole way w/his walker!), kids in other classrooms saw him, and you could hear the whispers as the kids told one another "Alex is back! Alex is back!". Before we knew it, kids from other classes were at the door welcoming Alex back! It amazes me how many of the kids at IHMCS know Alex, and genuinely care for him! And adults alike! I think Alex was a little overwhelmed at first with the response! Anyway, we got to the classroom & they were just finishing up a lesson & the kids' backs were to the door. Then Mrs. Dewhirst said "Class, turn around!" and at first they looked at her like she was nuts, then slowly turned around & their eyes all got as big as saucers! They loved it! And Alex did too! The kids were all SO respectful of space for Alex & not running up & hugging him, but just hanging out around him & chatting him up! And a very interesting thing happened...When we first got there, when Alex walked w/his walker, he was very stooped over, resting his head on the handles. But as he got into the classroom & saw all of his buddies & all of the familiar surroundings, Alex's posture started to improve. And as he gained more & more confidence, the straighter he got! Before I knew it, Alex was standing upright with his walker! You could SEE the self-confidence back in his eyes!! I think it did him a WORLD of good to go back to school! Alex is going to TRY going to school on Tuesday morning, to see how he does/feels. Mrs. Dewhirst & Ms. Gardner, the principal, are completely open to Alex just slowly working his way back into the school day/week. Even if it's just an hour at first. Katelyn will be staying with him at school to assist him when he needs it. But I have a feeling once Alex gets back into it & starts hanging with his buds, he'll probably forget all about time! But we'll make sure that he doesn't overdo it! I think he'll probably do a couple hours in the a.m. on Tuesday. We'll see how it goes & if he's up to more on Wed. We'll definitely be going by Alex's body's schedule! and speaking of Alex's body, it has once again decided to keep us & the doctors on our toes! Yesterday (Sat.) Alex mentioned that he felt like he had a bruise in his groin area. So when I checked it out, there was no bruise, but there was definitely a LUMP. So, a minor freak-out occured in my head, then asked Jorge to check it out. Then Alex's friend Nicholas came by w/his Mom, my friend Mary, and I had HER check it out! We were worried that it might be a hernia, which would mean more surgery. I called & got Alex in to his pediatricians office at 2pm, and after much touching--which was incredibly painful for Alex, poor little guy!--the doctor was unsure whether it was a hernia or a lymph node. She called Dr. Saltzman (one of the docs that just operated on Alex on 1/5) & he wanted Alex to go to the ER so that they could get an ultrasound of it. So Alex & I headed, once again, to the ER, spending a lovely 3 hours there--and that was even after they called ahead from the peds office to let them know what was going on & exactly which test Dr. Saltzman wanted! Alex was scared at first, because he thought he was going to have to have surgery again. I was afraid of that too, but didn't let him know that & just told him we'd see what the ultrasound showed. Thankfully, it didn't show a hernia. What it DID show is an enlarged lymph node in the right linguinal (sp?) groin area. His blood work showed no signs of infection, Thank God, and the docs aren't sure why he has this. But due to the fact that he just had surgery, and that he just had a bunch of foreign material (titanium rods) put into him, they put him on a 7-day course of antibiotics, just in case the enlarged lymph node develops an infection. That way he's covered. Never a dull moment, huh? The lump is still there today, and it still hurts. It only really hurts when you touch it (same as Sat.), so thank goodness it's not a constant sort of pain for him!!! My little Hercules has enough on his plate as it is!!! We will keep watching it, especially watching for any signs of redness, or it becoming hot to the touch. Hopefully it will just go away on its own & no other treatments will be necessary! It's funny though...last night as we were getting our jackets on to leave the ER, Alex said "Oh man. I'm missing the ER & hospital already!". What a kid, huh? I'd venture to guess that there are not many people out there, kids & adults alike, that, after 30 surgeries & countless other medical procedures & hospitalizations, say something like that! Alex truly is a very VERY special little boy. I think the world could learn a lot from him & his positive attitude!! I know I do all the time!! Today was a really mellow day. Jorge's parents came over for lunch & brought KFC with, so that was REALLY nice to see them!! After lunch, I took Max to the library & Target, and Jorge & Alex just chilled on the couch & played MarioCart on the Wii! Tomorrow, the goal is to go bowling. The MOMS Club I belong to is having a bowling outing at the bowling alley down the road from us at 10am, and I was planning on taking Max because he had such a blast at the last one. But when Alex heard about it last week, he said he REALLY wanted to go. So the deal was, he needed to be able to walk with his walker in order to go. Talk about incentive!! He's now been walking more & more every day! And I'm sure tomorrow he WILL be able to go bowling with us! Someone will of course have to carry the ball for him, but the bowling alley has these great ramps that you can put up for kids, and they just put the ball at the top of the ramp & push it and VOILA! Instant bowling! I think both boys will have a blast! Katelyn will of course be joining us! She has been a Godsend. We are SO lucky to have her! And speaking of people we're lucky to have, yesterday at the ER, our good friend Andrea, who visited Alex a few times at the hospital this last surgery, was working! She is a Child Life Specialist at the U of M! She came down to the ER from the hospital floors (where she works) to see Alex! AND she brought a Star Wars Lego ship/troopers for him! THANK YOU ANDREA!! It was so awesome to see her again, though she was shocked it was in her ER! :) Anyway, long story short---ALEX ROCKS!!!!! It's still a long recovery, but we're making it! And hopefully there won't be any more medical weirdness pop up! Please keep those thoughts and prayers coming, as it truly is a day by day journey with recovery. We are SOOOOO thankful for all that EVERYONE has done for us, or said to us, or written, or whatever! THANK YOU! THANK YOU! THANK YOU!!! We are blessed to have all of you rooting for Alex!!! And don't forget to sign the guestbook!! :) Keep checking back, as I'll update how bowling, school, etc. goes! I was going to put new pics up of Alex at school on Friday, but my camera battery just died! So, check back on that one too! :)
Thank you,
Love,
Amy, Alex, Jorge & Max
p.s. If you'd like to see Alex's commercial, go to www.curepity.org. Then click on "cure pity campaign". Then click on "2009 tv spots". Alex's name will pop up w/a grey rectangle below it. Click the "play" button & there he'll be! Don't forget to turn up your sound! We've yet to see his commercial on TV, but we've heard from plenty of people that have!! So far, it seems to be airing a lot on Ch. 11 (NBC), or at least that's where the people who HAVE seen it caught it. :)

Monday, January 12, 2009 3:01 PM CST

WOOOOOOHOOOOOOOOOO! :)
Well, we're home & Alex is doing great! He had the best nights sleep last night since pre-surgery! He didn't wake up once, and basically took his meds in his sleep at 12:30am & 4:30am! Then he woke up at 8:30, just in time for his next meds! During the night, we skipped giving him the Valium, too, and only gave him the Roxicet & Vistaril every 4 hours. He did great!! His strength just amazes me!! Katelyn is here w/us now too, as Alex's PCA (Personal Care Attendant), so that's a HUGE help! Alex also walked with his walker today all the way from the couch to the bathroom!! He needed to be carried back to the couch, but that's quite a distance for him! I'm so proud of him!!! And Max has been being VERY GOOD about not rough-housing around Alex, too! I hope that this great recovery at home continues on! Alex will have a follow-up appointment with Dr. Perra in 6 weeks, so hopefully until then he'll be doctor-free! :) Max & I went out & ran some errands together today and got some quality Max-n-Mommy time! We had fun! It's snowing snowing snowing here right now, and has been all day! Jorge is going to have his hands full shoveling our drive tonight, as our lawn tractor (we have a plow attachment) is on the fritz at the moment. Poor guy! But it's a light, fluffy snow at least, and not the heavy wet kind. Those of you who know how LLOOONNNGGGG our drive is will understand how it'll be a handful!
So, we're just going to keep plugging away with Alex, having him use the walker as much as possible to get that strength back. He's been sitting up on his own now, so that's awesome! He still can't sit for a really long period, but playing the Wii with Katelyn has been a real incentive! :) He's even up for playing a little Star Wars with Max! Last night when we came home, the car ride was really hard on his back, and it seemed like we were on the bumpiest roads ever and that we always got behind the slowest driver in the world. Once we got him home & on the couch, he was REALLY REALLY fearful that Max was going to hurt him. If Max got within 5 ft. of him he'd freak out (which was a bit annoying!), and he "told" us that Max was going to have to go to his room because he was too loud. HA! We got him straightened out on that one! We reminded him that the hospital was a noisy place too, and that he'd just have to get used to Max's kind of noise! It's nice to see him so much more relaxed today! My MOMS Club is once again coming to the rescue with meals for us this week, so that's a HUGE relief!! THANKS MOMS CLUB! And some of my friends from IHM, Alex's school, are also going to be providing some meals, so all I can say again is THANK YOU! THANK YOU! THANK YOU! and WHEW!!! Thank you all SO MUCH for all of your thoughts & prayers, for all of your kind words on his guestbook, for all of the visits, the cards, the gifts--EVERYTHING!!!!! It is SO NICE to know we're not alone on this huge journey of ours!! BLESS YOU ALL! Alex will still be at home & away from school for at least this week, so if anyone would like to come to our house to visit, you are all MORE THAN WELCOME!!! Alex would absolutely LOVE LOVE LOVE IT!!!! He really misses all of his friends! And if you'd like to send a card or note to him, I'll put our address below! OK, keep checking back because I'm going to try & update this daily! And if you didn't know I put new pix on the photo page yesterday, I DID FINALLY! So check them out! And I'll try to keep that more up to date now too, now that I finally have some room on my computer & know where the USB cord is! :)
BLESS YOU ALL!!!!!!!!!!!!
Love,
Amy, Alex, Jorge & Max


p.s.!!!! If you go to www.curepity.org, click on "cure pity campaign" & then on "2009 Tv spots", you can now see Alex's TV commercial! :)
Make sure you turn your sound up!

Sunday, January 11, 2009 12:23 AM CST

ALEX IS GOING HOME!!! :) Today's a big day! We're excited to finally be going home! AND THERE ARE FINALLY NEW PICS ON THE HOME & PICTURE PAGE, SO CHECK THEM OUT!! We're expecting visitors shortly, Alex's school friend Brigid, so I'd better go. But I will continue to update on Alex's progress from home! They thing I'm most nervous about is Max being aware that his big brother can't wrestle & rough-house like they used it. That will come in time! Katelyn will start tomorrow at our house as his PCA, so that will be great! OK, keep on checking in with us! And keep signing in too!
:)
Love,

Amy

Saturday, January 10, 2009 4:29 PM CST

Well, today is indeed another day, and it is indeed better than yesterday! Alex had a good night, and I woke up not feeling nearly as crummy! Alex also has not needed any Morphine today! Even with PT! And speaking of PT, Alex WALKED today!!! Now, he fought it tooth & nail and told us he couldn't do it, but we made him sit up & then we put the walker in front of his bed, he slid down to it & he took a few steps from the bed to the chair & back! It hurt, and it was really hard, but darnit--HE DID IT!!!!! I was so incredibly proud of him! And more importantly, he was proud of himself! I thought for sure he was going to need Morphine after that, but he didn't! YAAAAAYYYY! :) Dr. Perra came by this morning & said, depending on how he did at PT (Alex hadn't had it yet), and if Alex was ready, he might be able to go home tomorrow. When he asked Alex if he was ready to go home tomorrow, Alex said "NO!", but I'll ask him again tonight & see what he says. I'm thinking it might be Monday that we go home, but we'll see. Alex has had some visitors today too! His school friends Nicholas & Luke came by w/their parents for a nice long visit! They played with all of Alex's Star Wars action figures & even played a little Star Wars Monopoly! AND, Alex was sitting up on his own--voluntarily! He can't sit up for too long, but he'd sit up & play, then lay down & play, then up again, etc. AWESOME to see!!! Nicholas left a bit ago, but Luke & his Mom Kathy are still here & she ordered me to take a break, so here I am doing his update! His school friend Kate is coming a little later, too! Alex also had a therapy dog visit today. Her name was Angie, and she was a retired Greyhound racing dog! She was white & very cute! I'm not sure if I mentioned this the other night or not, but on Thursday night, SANTA CLAUS came to visit!!! He had some down-time now, after Christmas, so he was coming to visit the kiddos! It was pretty cool! OK, gotta run & relieve Kathy from her duties so she can go. Have a great Saturday everyone!
:)
Love,
Amy

Friday, January 9, 2009 7:25 PM CST

Hi! Today was definitely better than yesterday, even though I woke up with a cruddy cold! That's all we can ask for, right? That each day is better than the last? Alex's pain was better today, and he only needed Morphine twice, once in the early early morning & then once right before PT. And in PT this a.m. he sat on the edge of the bed for 3 minutes, then at the afternoon appointment he sat & then stood again, this time leaning on the edge of the bed. It was INCREDIBLY hard for him to do, but he did it! After the appointment I talked w/the phys. therapist, and we decided that tomorrow we'll try the standing with a walker. We think this might help him get the stability he needs, as well as give him a little confidence. We'll see, but I really hope it will work!
We've been working more on the dinosaur sticky mosaics that our friends the Luksans brought for Alex. They are such cool things! And PERFECT for the hospital! Our friend Andrea visited Alex today & worked on it with him for a while. We're doing the T-Rex right now. We already finished the Styracosaurus. Andrea was also an angel & brought me some Airborne, Ester-C & Eucerin hand lotion! I've got to try & whip this cold! And the dry hospital air in conjunction with the constant hand washing has been brutal to my hands, and they've turned actual red & cracked, not to mention painful! The lotion has already done wonders! THANK YOU ANDREA! Katelyn stopped by tonight with her boyfriend Luke & we hung out a while & watched an episode of THE CLONE WARS on Cartoon Network. That's the new cartoon of Star Wars that I think the newest movie was based on(?). We don't have cable at our house, so Alex was thrilled when he found out the hospital had the right channel so we could watch it! There's another episode-a new one-on at 8pm, so I told Alex I'd make this a quick update! :) Katelyn also brought me some delicious spinach-garlic pizza for dinner, and a new Wii Mario Cart game for Alex!! WOW! Alex can't wait to get home to play it! We've played it once before & it is REALLY hard to steer the thing! We were constantly crashing!! So, since Alex will be on the couch quite a bit initially at home recouperating, and Katelyn will be his PCA (Personal Care Attendant) all day, they'll have plenty of time to perfect their driving abilities! :) THANK YOU KATELYN!!
Alex & I got to see his TV commercial today! It's wonderful!!! It's going to start airing either Monday or Tuesday on all the major networks! I'm so excited for our family to see it!
Tomorrow morning Alex will have PT again, but that will be it for the weekend, which I'm sure Alex will be thrilled about! Jorge's parents are going to try & visit tomorrow, and a couple of Alex's school friends--Luke & Kate--are going to try to come this weekend sometime to visit as well. Yes, Alex will still be here over the weekend. MAYBE (????) he'll go home on Sunday, but we'll have to take it day by day & see. My guess would be more like Monday. Jorge & Max are still sick, but Jorge is hoping they'll be better this weekend so that they can visit too. We all miss each other a bunch.
OK, I'd better wrap up so that I can get back to Alex's room to watch The Clone Wars with him! I'm sure he's freaking out, worrying I won't make it! What's he watching while he waits? The Clone Wars Movie of course!!
Sorry for the last couple of sort-of downer updates, but we all have our bad days, don't we? Just look forward to tomorrow!
:)
Love,
Amy

Thursday, January 8, 2009 10:19 PM CST

Another long day. But aren't they all? Sorry for no updates 'til now. I'm just beat. Alex had a better day, pain-wise, which is awesome. He still needed some morphine, but not as much. He's still on the Roxicet, Valium & Vistaril. I'm sure he'll go home on those 3 meds. When? Who knows. He made it through both PT appointments today, hard and painful though they were. The a.m. one he "stood" for a couple of minutes. I say "stood" because he's unable to support himself, but he was standing on his own leg (leg, because only the left one reaches the ground & it hurt him too much to crouch down to put the right foot down), with his head resting on the physical therapists shoulder & with her supporting his hips. We then tried putting him in a wheelchair & I wheeled him down to a computer so that we could read some of the guestbook entries. We were only able to read 4-5 of them before he said he was in too much pain & too tired, so I wheeled him back & put him in bed so that he could get some pain meds & rest. I made sure to show him the entry from Darth Vader! That brought a tiny smile to his face! At the second PT appointment she had him sit on the edge of the bed for 4 minutes. He actually pushed himself upright to sitting on his own & was able to hold that position for about 1 minute, and then needed the phsy. therapist to hold him up. But that was awesome that he did that on his own!! And "stood"! Any little bit out of bed, or in a different position than lying down is good. Otherwise we need to worry about bedsores forming, and we certainly don't need to add anything else to our already overflowing plate. Alex had a quieter day, visitor-wise. Jody, whose daughter Mariah goes to ECFE with Max, stopped by for a while after lunch. Then Alex's friend/classmate Nicholas stopped by w/his Mommy & Daddy around dinner time for a visit. Alex had been waiting ALL DAY for that one! He brought Alex a cool Star Wars The Clone Wars Yoda, which Alex loved. And they brought me some yummy Chinese food! YAY! Alex also got 3 packages in the mail here! 2 from Grammy & PopPop (my parents)--some magic cards & a mini-Doodle-Pro, and one from my high-school friends Dawn & Kevin Gore--a Star Wars Sticker Book! What a total surprise!! Alex loved all of it & thought it was really cool to get mail at the hospital! Jorge and Max have been unable to visit because they both have bad respiratory crud going on, especially Jorge. I have to say, I REALLY miss my little Max. So much so that it brought me to tears tonight, and that's not an easy thing to do. I miss hearing his little voice saying "Mommy! Mommy! C'mere! C'mere!" (C'mere is Max-ish for 'Come here!') and all the other wonderful things about him. (Even the not-so-wonderful things!). I sure do miss that little guy. Well, tomorrow is another day. Wish us luck.
Love,
Amy
p.s. The Gillette's TV commercial that Alex is the star of is going to start airing next week! So all you local-yokels, keep watch! The print ads won't be in print until sometime in March. For those of you who are not local, you will be able to view the commercial some time next week at www.curepity.org. :)

Wednesday, January 7, 2009 9:41 PM CST

Well, so much for a pain-free day for Alex. The morning went well, but the afternoon/evening has been quite rough. I don't know if it's because of the PT this morning or what, but he has needed quite a bit of the Morphine, as well as all of the other pain meds. Kind of a bummer, but what can I do? We have a nurse tonight that has been being rather troublesome (to put it politely) in regards to giving him the Morphine, saying "He can't go home on Morphine!". WELL, DUH. But it's like, he's not going home tomorrow for crying out loud! And I'm not going to sit here & watch my son writhe & cry in pain until the next dose of Roxicet in an hour & a half!!! She kept saying "Well, let's just wait & see." Well, I did, and after 10 minutes, I came out of the room & put my foot down, had her come in & see Alex writhing in pain, and told her to PLEASE get him some Morphine. She still balked, but I have to be an advocate for my child!!! It's not like I'm just some crappy Mom that just wants to keep my child doped up! I'm a good Mom that doesn't want her little boy to be in agonizing pain! But with her hemming & hawing about it, it made me feel just the opposite of a good Mom. It made me feel really crappy & like I was creating this drug-addicted little 7-yr.-old boy. Ugh. Man I need some hugs right now. (And a good massage.) And even with the Morphine & other pain meds, he is STILL waking up (he's been resting now at this hour) every hour in tons of pain. I have a feeling that tonight is going to be another rough night for him, waking frequently. I wish I could just make all of the pain go away for him. He has 7 big incisions on his back, from his left shoulder blade, all the way down to his right pelvic bone...I wouldn't even know where to begin.
Alex had more visitors this afternoon/evening. Some he was awake for & not completely riddled with pain. Others he was semi-awake & in lots of pain. Katelyn came by again & brought him some cheese cubes (cheese is his favorite food, especially marble as he calls it). Hopefully tomorrow he'll have an appetite to eat some. For now they're stored in the fridge. Katie came by w/her sister, Jenny. Jorge's Mom & Dad--aka Papa & Weeta--both came by. Alex's teacher, Mrs. Dewhirst, came by with the school principal, Ms. Gardner, which was really nice! He was pretty awake & not riddled with pain for them! :) And his friend/classmate Jordan came by with her Mommy too. Alex was having quite a bit of pain then, but they hung out with us & watched a little Speedracer & chatted. Jordan brought a very nice picture that she colored for Alex. Mrs. Dewhirst brought a whole bag full of cards that all the kids in Alex's class made for him, which was awesome! Alex hasn't felt up to looking at them yet, but we'll be sure to do that tomorrow morning! Then we'll hang them up in his room with his other cards! Oh, and a really cool Cookie Bouquet was delivered for Alex today from his friend Nicholas! Even though Alex hasn't had much of an appetite, he did manage to eat both arms & both legs off of one of the bear cookies! :) (I ate an ear, but I'll save the rest for him!). There are a whole bunch of bears decorated in doctor & nurse outfits, and in the middle there's a cookie that says "Cookies are good medicine!" It's super cute! Nicholas & his Mom are coming to visit tomorrow after school, so hopefully Alex will be feeling alright then. My Mom & Dad sent packages to Alex here at the hospital on Monday, Tuesday & Wednesday, so hopefully those will be arriving starting tomorrow! I think he'll be really excited to get packages at the hospital! :) Alex's afternoon PT ended up getting cancelled because he was in too much pain. So we'll try again tomorrow. That nurse tonight said she was bound & determined to get Alex up & standing tonight. Yeah right. She said that quite a bit earlier, and before I put my foot down, so I think she's given up on that one. I understand WHY she wants to do that, and that it's very important for Alex to get up & start moving around. But I think that should be more for the Physical Therapist to decide, as well as Alex--to a point. I know he'll fight that tooth & nail because it hurts, but as his Mom, I know the difference between when he's just milking that to get out of doing something that is hard, and when he's just truly in WAY too much pain to even attempt it. Ugh. I don't know. If things keep up this way--with the pain--I don't know WHEN he'll be going home from the hospital. It definitely won't be Friday, unless some miracle happens tomorrow to rid Alex of the majority of his pain & miraculously heal all of those cut muscles, cut tissues & broken bones. Saturday? Doubtful. Sunday? I don't know. We just have to take it hour by hour. I haven't even been take Alex to a computer to read everyone's wonderful Guest Book entries! He's completely unable to be lifted out of bed & into a wheelchair! I can't even IMAGINE the pain that would put him in!! Hour by hour, I know...
But PLEASE PLEASE PLEASE keep those Guest Book entries coming, because eventually he WILL be able to read them, and he will be THRILLED when he finally does! And PLEASE keep those good thoughts & prayers coming! I've never seen Alex in this rough of shape, so he needs everything positive he can get!!! THANK YOU! THANK YOU! THANK YOU!! If you'd like to reach us, you can call my cell at 612-749-4798. Please leave a message if I don't answer, as that would mean I'm tending to my sweet little boy (or maybe taking a much needed bathroom break!).
Love,
Amy, Alex, Jorge & Max

Wednesday, January 7, 2009 12:39 AM CST

Alex had a rough night last night, and was up nearly every hour with pain. But he's doing much better now. I've actually seen "Alex" today! What I mean by that is, I've seen that sparkle that Alex always has in his eye, and his smile, and his voice! He still has pain, but they switched one of his pain meds & that really seems to be helping much more. We want to try & get him off of that morphine, but the other things didn't seem to be helping much & we'd always have to resort back to that. But after talking with the nurse this morning, we got rid of the Capital w/Codeine, as it seemed to do nothing, and switched it for Roxicet. Since the switch, he hasn't needed any Morphine! Hopefully it will stay that way! That probably partially accounts for that "Alex sparkle" coming back too, as the Morphine makes him very groggy or knocks him out. He is still getting the Vistaril & the Valium. We have him on a schedule now where he receives one of the pain meds every 2 hours so that we're on top of the pain instead of trying to catch up to it. It seems to be working quite nicely. He even ate some mac-n-cheese for lunch! And we've been working on some cool "sticker-by-number" dinosaur art that his friends Maitland & Mariah brought last night. Alex only has one "working" arm right now, and the stickers are quite small, so it's taking us quite a long while! That's perfect though. It's not like we're going anywhere any time soon! Jessica from Music Therapy is in with Alex right now & they're jammin', so I snuck away for this update. Doc Sparkie, one of the therapy dogs, stopped by this morning for a visit & gave Alex's leg a very long bath! Doc Sparkie is a Besenji & very sweet. She was the first therapy dog we ever met, and I think that was about 2 years ago! Alex also started PT this morning. He'll be receiving it twice a day. Last night, while I was doing the last update, the nurse got Alex to sit on the edge of the bed very briefly. He wasn't able to stand, and just sitting there was extremely painful for him in his right leg. I think this is because of the incision they had to make on that lower right side to attach the VEPTR hook to his pelvic bone. This morning in PT we had him do the same thing. It took almost an hour for him to sit up, and he needed help, but he did it! They'll be back again this afternoon. Alex is going to have more visitors today! Katelyn is coming again, and Katie & her sister Jenny are coming around 1pm. Then around 5-5:30 Alex's teacher, Mrs. Dewhirst, and the principal, Ms. Gardner, are coming to visit, which he's really excited about! And then around 6-6:30 his friend from school, Jordan, is coming with her Mom! Another busy day in the life of Alex! I'm really happy to see him more alert & more himself today!!! I felt kind of bad for the visitors yesterday. Alright, I'd better go see if the first round of visitors are here! Keep those thoughts & prayers coming please!!!!! And don't forget to sign the guestbook! If you've missed a journal entry, just click on "journal history" to read back.
:)
Love,
Amy

Tuesday, January 6, 2009 7:54 PM CST

Whew. In the words of Yoda (or at least he'd say it this way if he said it at all), "a long day it has been"...
After jacking myself up on energy drinks, I've made it through the day without falling asleep. Alex is now in his regular room, Unit 4 West, Room 451-1, at Gillette Children's Hospital in St. Paul. He spent most of the day in & out of considerable amounts of pain, and pain meds sleep. He is still on small amounts of Morphine, as well as Valium, Vistaril & Capital w/Codeine. They took his catheter out today & he finally pee'd this afternoon, right before they were ready to do a bladder scan on him because they were worried it had been so long since he'd pee'd. Always keeping the docs & nurses on their toes, that Alex! :) So I was thinking about it today, and I figured Alex was in surgery yesterday for close to 6 hours. SIX HOURS!!!!!! Zoiks! That's the longest he's ever been. Due to all of the pain meds he's on, Alex doesn't have much of an appetite, but I managed to get a few bites of hot dog in him, a couple of licks of popsicle (It's true--Alex has not eaten ONE popsicle since being here! This from a boy who polished off 6 in one morning the last time he was in for surgery!), a couple of bites of DQ ice cream that our friend Andrea brought, and a bite of delicious homemade fudge that our babysitter (and soon to be Alex's PCA-Personal Care Attendant) Katelyn brought! What a menu! Alex has not gotten out of bed in over 24-hours, and his nurse informed me this afternoon that her goal was to get Alex out of bed today. Not walking or running around, which would be impossible seeing as though he can't even lift his left arm, let alone his body, but to at least stand for a second. And as I write this, that is what she's attempting to do, along with the help of another (at least 1) nurse. I told her that if I were in the room, there was not a snowball's chance in you-know-where that he'd get out of that bed. And I couldn't be in there while they do it because it would break my heart to see him crying like I'm sure he's doing. Ugh. I'm spent. Alex had lots of visitors today, though he sort of slept through some of them. Jorge's Dad started out the day w/a visit this morning. Katelyn came bearing fudge & chocolate chip cookies, and our friend Andrea from the U of M Child Life dept. came. They were actually here at the same time, so we gals sat & chatted while Alex was sleeping! Then Alex's friends Mariah & Maitland came w/their Mommy & Daddy, and his friend Thomas came w/his Mommy & little brother Jack. A BIG deal was Daddy coming to visit with Max! I just took Max out of the room & played with him with the hospital toys so that Jorge & Alex could get some Daddy & Me bonding time. So it was a busy, busy day! Katelyn is going to be coming back tomorrow to hang out & help. She helped some today too--good practice for when she's Alex's PCA next week! :) We are so lucky to have found her for a babysitter, and then to have her be able to be his PCA too? Icing on the cake. We've always been lucky w/our babysitters. We've got Katie, too, who's also a dear! Katelyn is bringing me a sandwich from Potbelly tomorrow for lunch...mmmmmmmmmm.......I brought a bunch of microwave soups w/me to eat, and they're yummy, but not Potbelly yummy! And hospital food doesn't even come close. It's not that it's bad really, but the cost of it is outrageous!! Our babysitter Katie is also planning on coming to visit tomorrow. Yay! Hopefully Alex will be a little more "himself" tomorrow & not in so much pain. This one's gonna be a lllooooooooooooonnnngggg recovery I think. Jorge & Max are planning to visit too! Alright. I'd better go so how Alex is doing. The nurse did say that if he just seemed like he was in way too much pain, she would not make him get out of bed. Whew. Keep those thoughts & prayers comin'! Thanks for all you've said & thought already! And please don't forget to sign his guestbook! I haven't been able to get him into a wheelchair yet to bring him to the computer, but maybe tomorrow! And if you'd like to send cards, I'll put the hospital address & our home address at the bottom. If you'd like to call, please call or text my cell at 612-749-4798. Take care!!!
:)
Love,
Amy

Alex Molina
c/o Gillette Children's Specialty Healthcare
200 University Ave. E.
Unit 4 West, Room 451-1
St. Paul, Mn 55101
or
Alex Molina
3534 Shady Oak Road
Minnetonka, MN 55305

Tuesday, January 6, 2009 10:19 AM CST

Good Morning!
Well, Alex had a good night...restful. I wish I could say the same--I was up 'til 4am tossing & turning! To say I'm tired would be an understatement. Alex is still in the ICU, but he will be getting transferred over to his regular room on 4W around noon. He'll be in Room 451-Bed 1, and the telephone # in that room is 651-312-3148. But remember we won't be in there for a while. Plus, I would really rather you call on my cell so that if Alex is sleeping, the loud room phone won't wake him up. My cell # again is 612-749-4798, and you can call or text at any time. Alex is still sleeping a ton, and with good reason! The little guy went through 2 surgeries yesterday! They took his catheter out a little bit ago, which is good. It was bothering him immensely that there was a tube where there normally wouldn't be. I'll let you adults explain that one to the kiddos! :) Star Wars-The Clone Wars has pretty much been on a continuous loop in the dvd player by his ICU bed, but I did get him to change it to Speedracer a little bit ago, for (my) sanity's sake. I think Alex will be having some visitors today, which he'll love! Jorge & Max will be coming around lunch time, and I think Andrea--from Child Life at the U of M--is hoping to come. And I'm not sure who else off the top of my head, so you'll have to forgive my tired brain. Jorge's Dad came earlier this morning to see him. Alex hasn't eaten anything yet, though he did drink a little chocolate milk this morning. I think the pain meds--not to mention the pain!--keep his appetite down. They had him on Morphine last night, and this morning they gave him Capital w/Codeine (Tylenol 3), plus a little Morphine to tie him over 'til the Capital kicked in. I've been reading, or trying to. It's hard to read when your tired eyes are swimming in your head! Thank you to all of you for your thoughts & prayers thus far!!!! PLEASE KEEP THEM COMING!!!!!! I don't know when Alex will go home yet, but it would still be NO EARLIER than Friday. Again, Alex LOVES to hear from his friends, and I can't wait to read him all of the wonderful guest book entries thus far! He'll be so psyched! Please keep signing in each time you visit his page! And calls are great, or cards or whatever. Did you know that you can actually send him a card here at the hospital?? I just found this out, because my Mom has some little gifts she wants to send him. If you want to send him a card here, just let me know & I'll give you the address, etc. Alright, I'd better get back in the ICU & see how my little guy's doing! I hope you're all doing well! Love hearing from you!!!!
Love,
Amy, Alex, Jorge & Max

Monday, January 5, 2009 1:52 PM CST

OK, Alex was out of surgery & everything went well, but then when they took xrays before waking him, they discovered that one of the VEPTR rods on the right side had separated. So now they've had to go back into surgery. They have to open him back up & remove that rod & replace it with another new one. He will be in the ICU for at least tonight. Jorge & I are just playing the waiting game. It's been a long time. We've been here since 7am, and Alex has been in surgery since about 10am. Aside from the separation problem, things went really well I guess. They (Dr. Perra & Dr. Saltzman) removed the hardware on that right side & replaced it (which they're now replacing again!), and got a VEPTR placed on the left side too. They were able to open his ribs up 3cm on that side! Dr. Perra said Alex looks a lot straighter! They had to cut all around the left shoulder blade so that they could reposition it. As some of you know, that left shoulder was rotated & really pushed forward. Now it's much more straight, and up where it belongs! It will definitely take some getting used to, on Alex's part. He will need PT again. Anyway, as I said, he'll be in the ICU (Intensive Care Unit) tonight, and hopefully he'll be able to move to a regular unit tomorrow. We've got all of our stuff in his "regular" room right now, and that's where I'll sleep, on the chair, as long as they don't get a sudden influx of patients & they need the room. The room # is 451-Bed 1 on Unit 4 West, here at Gillette's in St. Paul. Visitors are still welcome & encouraged (!!!!), though it will have to be after he's out of the ICU, as they don't allow visitors in there. If you'd like to arrange a visit, you can call or text my cell at 612-749-4798. And I'll keep updating this webpage too. And don't forget to sign in on the guestbook when you visit this page, please!!! OK, gotta go see what's going on. Hope to hear from some of you (or all!) soon.
Love,
Amy, Alex, Jorge & Max

Monday, December 22, 2008 2:16 PM CST

Hello Everyone & Merry Christmas!
Well, it's getting towards the end of the year, and you know what that means...MORE SURGERY. Alex's next surgery is scheduled for Jan. 5, 2009 (can you believe it's nearly 2009?! I remember when Prince's song "1999" came out, and 1999 seemed SO FAR AWAY! Now we're 10 yrs. past!) at Gillette Children's Hospital in St. Paul(on the 4th floor of Region's Hospital). This next surgery is going to be a HUGE one, and unfortunately, it's on the day Alex is supposed to start back to school. So he'll miss at least the first 2 wks. of school. :( The last surgery on June 9th marked the last possible expansion on the current VEPTR (Vertical Expandable Prosthetic Titanium Ribs) rods that are attached to Alex's right ribs. So with this coming surgery, the surgeon--Dr. Perra--will need to take out all of that current hardware & replace it with 2 whole new, larger sets. But now, because they've opened those right ribs up so much (because with the scoliosis, the ribs had been caving in & not allowing Alex's right lung & heart to function correctly), the left ribs are now caving in on the lung & heart. This means that they now have to open up Alex's chest wall so that they can place a VEPTR rod on the left side, too. Since the chest wall is involved, and that's not Dr. Perra's area of expertise, another surgeon, Dr. Saltzman, will be doing the chest part. Dr. Saltzman was the one who teamed w/Dr. Perra for the original placement of the rods on the right side. He's been one of Alex's surgeons since he was a newborn! Dr. Saltzman will need to cut all of the muscle around Alex's shoulder blade on the left side in order to move his shoulder/shoulder blade back to allow the rod placement. This rod will be attached to the shoulder area, all the way down to his pelvis, if I'm remembering correctly. The right rods will also be moved, at least the lower one, so that the hook is attached to his pelvic bone instead of his lower rib. This will get rid of the big bump sticking out of Alex's lower back (the bump is the hook) but will take more time for Alex to get used to, as it will be right where the waist of any pants would sit. There will be lots of cutting of tissue, muscle & probably bone too, so this recovery will be difficult. He won't be able to walk initially, and we'll just have to take it slow. His surgery is on a Monday, and we'll most likely go home on Saturday, or Friday at the earliest. Thank God that Alex's loves the hospital! Amazingly, I actually thought ahead & have arranged for Alex to have a PCA (Personal Care Attendant) to come to our home once we're home to help me out, as Alex will be completely dependant on us to get anywhere, or even to change positions. I don't know how on earth I'd be able to do that with Max, busy little guy that he is! I think I'd lose my mind! The best part about the PCA is that, with the agency we use, if we have someone in mind who's qualified, we can have them go through the agency & they'll be our PCA. So, our babysitter Katelyn is going to be Alex's PCA! She's currently going to school at the U of M to get both her Bachelor's & Masters in nursing, so she's definitely qualified! And Alex (both boys really) just loves her to death! (as he does our other babysitter, Katie!) I'm so thankful we can use her! This way there's not some stranger in our house. I trust her completely. We actually met her back in Jan. '08 when Alex was in hospital at the U of M for 8 days for that recurrent staph infection! She was one of the volunteers for the Child & Family Life services that would come around & play with the kids! We were lucky to have found her! So, recovery will be tough. I hope that some of his friends might be able to come visit him, though I know it'll be weird to see Alex that way, and not running around playing Star Wars! But Alex LOVES visitors and LOVES just hearing from people, whether it be by phone, card or visit! So please keep that in mind!! I will, of course, be updating this after the surgery w/his hospital room # & tel. #. And my cell # is 612-749-4798. You can always leave a message on that if I don't answer. One thing the doctors are concerned about post-op is those hooks or any of the hardware either breaking off the bone, or breaking through the skin. Alex is such a SUPER SKINNY guy that he just doesn't have any fatty tissue to cover up the hardware. It's just right under his skin! That's why the hardware is so visible on him. Hopefully he won't have any problems with that!!! Right now, the boys & I are in Iowa with my parents for Christmas. They're having a blast getting to see Grammy & Popop! Jorge will be joining us on Christmas Eve day, as will my brother Brian, his wife Christy & their 2 girls, Brielle & Avery! I can't wait to see them! It's been a year since we last saw them!! WAY TOO LONG!!! We'll be returning to MN on Sunday, weather permitting. It's SUPER COLD here, with below 0 temps. ICK! Jorge had to drive us down to Des Moines on Friday, drop us off at the Marriot, then turn right back around & drive the 3.5 hours back, as the weather in MN was supposed to be nasty on Saturday, which it was, dumping 7 inches of snow at our house. The weather for my parents on Friday was nasty, so the boys & I spent the night at the Marriot, and my parents then came to pick us up on Saturday, when their weather was better, to take us down here to Shenandoah. The boys LOVED being at the hotel! And I have to admit, it really went well overall. I tried the restaurant for dinner Friday nite, but relied on room service on Saturday, after having to chase Max around the restaurant a million times on Friday. Aside from the upcoming surgery, Alex is doing great! He's in 1st grade now at Immaculate Heart of Mary Catholic School(IHMCS) and loving it! He still loves to read, and does so at at least a 4th grade level. I'm sure it's even more advanced now, because they tested him through the 4th grade in reading last year, when he was still in Kindergarten! Anyway, he also loves to write and is excellent at it, being an excellent speller as well! He loves science, too, but thinks that math is boring! He's become somewhat of a mini-celebrity too. Gillette Children's & the Children's Miracle Network have chosen Alex to be in their "Cure Pity" campaign (www.curepity.org), and will be in their TV commercials, as well as in print ads! The commercial will air on all major networks throughout MN & parts of WI, and the print ads will be featured in "MN Monthly" and "Mpls./St. Paul Magazine" magazines, starting some time in Jan. They'll keep us posted as to when exactly they'll be airing, and when the commercial is going to air, the film company & Gillette's/Children's Miracle Network will throw a launch party for Alex at his school (it was filmed at IHMCS), complete with cake!! :) They said that if Alex is still out from surgery when it airs, they'll postpone the party for him! The whole experience was wonderful, and Alex had a great time! He especially loved the owner of the film company, Buck. Buck was super cool with Alex!
I hope that you all are doing well, and that 2008 has been good to you!! And that 2009 will be even better! Merry Christmas & Happy Holidays to you all! Please keep Alex in your prayers coming up on Jan. 5, as well as his surgeons, and pray for a quick recovery too! Also, please remember that Alex ABSOLUTELY LOVES to hear from friends & family! And don't forget to sign the guestbook on this website! One of Alex's favorite things to do while in hospital is have me wheel him down to the computer to read the entries. I'll put our address here at the bottom too, in case you'd like to send cards!

Our love to you all!!
Love,
Amy, Alex, Jorge & Max

3534 Shady Oak Road
Minnetonka, MN 55305

p.s. I FINALLY have new pics I can put on this site!! But I'll have to wait 'til I'm back home in MN in order to do it. Stay tuned!! :)

Thursday, September 11, 2008 6:24 AM CDT

Oh my goodness! Where does the time go??? Here it is, nearly mid-September, and once again, I haven't updated this webpage for 3 months!!! I REALLY have to stop lying around on the couch eating bon-bons!! :)
Well, Alex's right knee/leg still isn't fully healed. That dang leg is the most frustrating thing!! He was needing to use a walker to get around, but now he has a brace for that leg to enable him to walk on his own. But if he does not have that brace on, he cannot walk on his own. He CAN take a few steps on his own w/out the brace if he's holding on to someones hand. The strength just isn't there. He's still getting PT 2 times a week for an hour, generally before school. And we are doing stretches w/Alex twice a day at home as well. We just want that leg to heal!!! Get back to the way it's supposed to be! That damned contracture is the bain of our existence. Alex's next surgery is scheduled for Jan. 5, 2009, so I hope that leg will be healed by then!! Yes, Alex's next surgery is already set. That will be surgery #27. But I'll tell you more about that in a bit. Let's just talk about summer for now... :)
We had a nice summer! And I hope you all did too! We were a bit limited on what we could do, due to Alex's mobility, but we still had a lot of fun!! I can't believe summer's already over & we're back to school! Time flies... Alex participated in a Chess Club this summer through his school, Immaculate Heart of Mary Catholic School, and really liked it! We'll be signing him up to participate in it again during the school year. I believe the club starts up again in October. The woman who teaches it, Ms. Daa, isthe 3rd highest ranked woman chess player in Minnesota & a USCF National Chess Master! She knows her stuff!
A BIG deal this summer was a new addition to our family! That's right, we got a kitten! We still have our "old" cat, Cookie, who is 11 now, and REALLY not so sure she likes the new addition!!! Alex named him Muffin, and he's an orange tabby with medium hair. We're not sure of his eye color yet, as it's still changing. He's a wild-man, but the kids just love him to death! Max just carries him everywhere! And Alex just loves to cuddle him! He is a very sweet kitty. Unbeknownst to him, poor little Muffin is in for a surgery of his own coming up on Sept. 23. That's when the little guy will get neutered and declawed. He'll have a 2-night stay then at a luxury hotel (the kitty vet clinic!). It'll be rough, but it has to be done!
In late June, Alex & I went with HopeKids to the theatre performance of "You're a Good Man, Charlie Brown" at Stages Theatre in Hopkins. They do such a GREAT job!!! We had a lot of fun at that! Next week, actually, Alex & I are going again w/HopeKids to Stages to see "How I Became a Pirate"! We've been reading the book & are really looking forward to seeing the play! :) Max doesn't go with us yet. He's just too young & WAY to busy for something like that! But I look forward to when he can come with us! Max had speech therapy all summer. Well, until the end of July. He's really progressing! He's hard to understand sometimes, but his vocabulary has expanded immensely, and he REALLY tries hard to say everything! He gets quite frustrated when we don't understand him (understandably), but really works through getting what he wants to say across to us. He's such a sweet little guy!!!! He starts speech therapy again this friday with a new therapist, Andrea, whom we met today. She's darling! And Max loved her from the get-go!! She will come to our house each friday for one hour of Speech Therapy. July brought more fun stuff for the Molina's! And miracle-of-miracles, it actually brought a vacation for me! The in-laws of one of my best friends, Shubi, own a 7-acre island called Norway Island on Rainey Lake in International Falls (you look right across the lake at Canada--it's GORGEOUS!!!). Shubi had invited me to meet her there, so July 3-7 I drove straight up I35 & had some much needed R&R!! Shubi's birthday is July 4, so it was great to get to spend that with her as well! And we got to see so many different fireworks displays! From International Falls to many different islands, the skies were aglow with so many beautiful colors! It's truly like Heaven on Earth up there! Her in-laws are such a wonderful family, and they all made me feel like part of their family as well. July also brought Max's 2nd birthday!! Can you believe it?!?! That little guy is growing so fast! We had a nice big party for him here at our house on the 12th & were blessed with beautiful weather & marvelous friends & family! My Mom & Dad were able to make the 8-hour trip up from Shenandoah, IA for it, and the boys always love seeing their grandparents--both sets!! Jorge's parents were also there, of course, as well as his brother Lou & his family, Aunt Mari & cousin Sandy and her 2 kiddos, plus lots of friends! July 15th was Max's actual birthday. My Dad's is July 24, and mine is July 29 (38--WOW!), so July is a busy bday month for us! Alex is still SUUUUPER into Star Wars, loving anything & everything that revolves around it, and in July there was a special Star Wars exhibit going on at the MN Science Museum, where they had loads of props, photos & history on & from all 6 of the movies, so we took Alex to see that (Max stayed home w/our babysitter, Katelyn) on July 19th. HE LOVED IT!!! I did too, actually, and wished I could have spent more time there reading all of the history on all of the different props, etc., but after 2-hours there, Jorge, calling it a "geek-fest ;)", had reached his limit. So OK, call me a geek! There were people there that were dressed up in full costume to make it even cooler! There was Darth Vader (of course!!), a few different types of Clone Troopers, Darth Maul (Episode 1), and many others. And now, when I say they were in full costume, I'm not talking some cheapo costume you might pick up at Target! These people have painstakingly put together EXACT REPLICAS of the movie costumes! They get hired by different places to appear! I got some really cool pics of Alex with them, so if I EVER get Jorge to show me how to load all of the old pics off of my computer & onto disks (my hard-drive is full due to all of the pics I have on there!!!), I will post some on the pics page of this website! (The Xmas pics that are on there now are getting a bit old, don't you think?!) The guy that was dressed as Darth Vader was a HUGE guy--at least 6'4"--and all of the kids were in AWE of him! And the guy who was Darth Maul was just downright scary looking (he did a FANTASTIC job with his costume!!) & scared the bejeezuz out of a number of kids, even when he was "out of character" and trying to just give them 5! For those of you that have seen all of the Star Wars movies (or in my case, seen all 6 at least a million times each!) you know how freaky Darth Maul looks! Boy, never in a million years would I have guessed I'd know so much about Star Wars!! Max, idolizing his big brother, is also WAY into Star Wars and knows the name of all of the characters! How do I know that, when he can't fully speak? If you ask him to bring say, Emporer Palpatine, a.k.a. Darth Sidious, he will promptly do so! Pretty amazing!
The week of July 21st brought Zoo Camp at the MN Zoo for Alex. He loved it! Unfortunately, when I signed him up for the camp, my brain must have still been back on Norway Island, as I signed him up for the morning class, which ran from 8am-12noon. Now, the zoo is a good half-hour drive from where we live on a good day when you're not in rush hour traffic, so getting there at 8am thru rush hour meant spending quite a bit of time in the car! And MAN was it HOT HOT HOT that week!! Due to the drive, Max & I just stayed at the zoo the whole time Alex was at camp, so we really got to work on our tans that week! HA! Max handled it like a champ though, and one day we even stayed at the zoo even after I picked up Alex from the camp. Alex loved his time there, and we'll most likely be signing him up again next year---though most likely for the afternoon session! Can you BELIEVE (an for those of you who know me well, this will truly seem miraculous) that we weren't late one single day that whole week? And some say miracles don't happen! ;) As I mentioned earlier, my Dad's bday is in July--the 24th to be exact--so the boys & I drove down to Shenandoah July 31-Aug. 5 to help him celebrate, albeit a little late. The boys did really well on the 8-hour drive! All I can say is THANK GOODNESS for portable DVD players!! My parents gave that to Alex years ago, and we've definitely gotten a lot of use out of it! If/when I get a new car (or minivan-YIKES!), we'll definitely opt for the built-in DVD w/2 screens package!! We all had a really great time while we were down there! The boys really loved hanging with Grammy & Popop (as they do w/the other set of grandparents, Weeta & Papa!), and seeing as though it's such a small town, it just has such a relaxed vibe to it. It was REALLY hot while we were down there, so we spent a lot of time at the pool! The day after we got back, Alex & I went to a presentation at the Edina library put on by "Bruce the Bug Guy". Bruce is an entomolgist & he puts on really really cool shows for kids & brings some creepy crawlies for the kids to hold & touch. The last time Alex & I had gone to one of his shows, roughly 3 years ago, we came home with 2 Madagascar Hissing Cockroaches, whom Alex named Lightning & Mater (he was into the movie "Cars" at the time!). They were really cool pets to have! But alas, they've both passed away now, and we did not walk out of this latest show with any new creepy crawly pets to our name (much to Jorge's relief)!
Alex had a few playdates w/school friends throughout the summer as well, which he loved! And, of course, his usual multitude of doctor appointments. He also had PT all throughout the summer. I had signed Max up for an "art" class for kids 18mos-26mos, which was a COMPLETE waste of time & money. The teacher was TERRIBLE, and the little "art projects" she had for the kids to do were WAY to complicated for kids in that age group. So we Moms/Caregivers ended up doing all of the work while also trying to watch after our now very bored children. I thought of complaining to the directors of the co., but then figured "Why waste the energy??". It wouldn't have really made me feel better, and in the grand scheme of things, there are other far more important things to stress over (i.e. Alex's leg & surgeries!). Sometimes one just has to get a little perspective!
We were asked by Gillette Children's Hospital & the Children's Miracle Network to be a featured family at this huge fundraiser here benefitting those two organizations in August. Alex & I went, while Jorge stayed home with Max (Jorge's list of favorite things to do does NOT include having a lot of attention being put on him!). It was held at the Marriot SW and we had a lot of fun! There were tons of MN Wild hockey players, though seeing as though I've only watched one hockey game in my entire life, I wouldn't have known them from Adam. But, the highlight of the evening--for me anyway--was getting to meet & hang out with Kristi Yamaguchi & her husband Brett something-or-another (he's a pro hockey player, hence my not knowing his name!). They were the nicest, most laid-back couple!! It was just like I was sitting down talking to good friends that I'd known for ages! I was absolutely thrilled to meet her! And her husband! We got some good pics with them, and again, once I get the pics off of my harddrive, blah, blah, blah...I'll get to it eventually!
Well, I guess I'm pretty much caught up to the present day now! School started again for Alex on Sept. 2. He is still at Immaculate Heart of Mary Catholic School (I think I already mentioned his school way at the beginning of this journal entry, but I've been blabbering on for so long now, I don't remember!). He is now a BIG 1ST GRADER!!! He's LOVING it, and thinks having an actual desk is "AWESOME"! All of his friends from the last 2 years are still there, though some are in the other 1st grade class, and he loves getting to hang out with them all of the time! His teacher, Mrs. Dewhirst, is a dear & he really likes her!! She's VERY organized, which helps ME when it comes to knowing what paperwork, etc. I need to get back to her, or what's coming up, etc. I think he's really going to enjoy this year at school (not that he didn't last year!)! The one bummer is his surgery coming up on Jan. 5. His current VEPTR rods have reached their maximum expansion, so at this next surgery, those rods will need to be removed and then replaced with new, bigger rods that will once again be expanded every 6 months. This will mean more cutting of tissue/muscle/bone and a much longer recovery. PLUS, in addition to those rods, all of which are on the right side of his body, he will need to now have at least one, possibly 2 rods put in on the left side as well. Again, more cutting of tissue/muscle/bone...longer recovery, etc. Why now on the left side as well, you ask? Well, it's because while the current rods open up his ribcage on that right side to allow for his right lung to function more properly, that has caused the ribs on his left side to sort of "cave-in" and it is impeding the function of his left lung. So now they have to attach VEPTR's to that left side as well. This will be much trickier, according to Alex's spine ortho surgeon Dr. Perra, due to Alex's small size. The trouble is finding somewhere to attach the hooks that hold the VEPTR's in place. The hope is to attach the top hook to his upper left rib, and then the lower hook to his pelvic bone. But due to Alex's curvature, there is a greater risk of one or both of those hooks to break off of the bone, which of course would mean additional surgery. Also part of the problem is the fact that since Alex is such a skinny little guy, without an ounce of fat on him, it is much more difficult to get his skin to cover those hooks without breaking through his skin to the outside air. Again, this would require more surgery, and if it broke through, the additional risk of infection. To put it mildly, we aren't looking forward to this next surgery AT ALL (not that we ever DO look forward to ANY surgery!!). He will be in hospital for about 5 days, but will most likely miss school the entire month of January. I tried & tried to get the surgery scheduled for either the beginning of Thanksgiving break (they get 1 1/2 weeks off) or the beginning of Christmas break, when they get 2 weeks off. But, since there will be 2 surgeons needed for this surgery--Dr. Perra and Dr. Salzman--schedules could never mesh with one another to make it happen. I was trying to schedule it that way so that Alex wouldn't miss quite so much school, but the stars just weren't aligned right to make it happen. BUMMER.
Anyway, on to a HAPPY note! ALEX JUST TURNED 7 YEARS OLD!!!!! His bday was Tues. (9/9), and we had a very nice Star Wars-themed party for him on Sat. 9/6 at the Westwood Hills Nature Center in St. Louis Park. His entire class from last year (plus a few extra friends!) was invited and all but one could make it, so we had a whopping 17 very wiley 1st graders to try and contain! :) It went great!! The kids all had a blast, and we were once again blessed with gorgeous weather! A naturalist first brought out some critters for the kids to touch--Alex chose a snake and turtle--and then took them on a nature hike/bug hunt on the trails all during the 1st hour. The second hour was dedicated to cupcakes & ice cream and, of course, PRESENTS! All the while, we had music from all 6 Star Wars movies playing in the background from a CD we checked out at the library! A great time was had by all!! :)
Well, I think that brings us to today, so that's that! I hope you've all had wonderful summers and great beginnings to the school year! Please keep those thoughts & prayers coming. Pray REALLY hard for that darned right leg to get better!!!! And PLEASE PLEASE PLEASE don't forget to sign the guestbook on here!!! We love to hear from you all! And if you're feeling REALLY motivated, Alex loves to get cards by "snail mail"!!!! I'll put our address below just in case! :) Look forward to hearing from you all!
Love,
Amy, Jorge, Alex & Max
p.s. Jorge & I just celebrated our 10-year wedding anniversary on 9/5! WOW!!!

Wednesday, June 18, 2008 10:58 AM CDT

Whew... Alex has been home for almost a week now, and a LONG week it's been! He's in PT right now, and Max is w/Weeta (Jorge's Mom), so I finally have a moment to update this site. Alex's pain is getting a little better, and I switched him just yesterday from the Roxicet & Valium to Tylenol w/Codeine. I still give him the Valium, though not as often. And I can usually space the dosages out to every 6 hours instead of every 3-4. But he's still not walking. I have to carry him everywhere, or use a wheelchair if one is available where we're going. We have a double stroller, but it's really difficult for Alex to ride in, as it's really cramped and Max tends to reek havoc on Alex in the stroller. He'll either turn around & mess with him, or he'll keep rocking back & forth in front of Alex which whacks against Alex's knee. And at home, I can't get ANYTHING done, because I have to constantly be in the same room as the 2 of them to keep Max from hurting Alex. I literally CAN NOT leave the room. It's not that Max is setting out to hurt Alex, he's just used to being able to play & rough-house with him, and doesn't understand the whole concept of owies & surgery pain, etc. Sometimes I'm just at my wits end. Yesterday I needed to go to Target, and Alex was having too much pain at the moment to ride in the double stroller, so I had to get Target's wheelchair. Well, then I don't have any way to control Max. I can't push a wheelchair & a stroller or shopping cart. So I had to just have Max walk. It actually went WAY better than I thought it would, and Max just stayed right by my side the whole time. Kind of shocking! But it's tough. I'm in the lobby of Gillette's Minnetonka right now updating this, and I told Alex that we could do something special afterwards since Max was with Weeta, but I don't know what we'll be able to do. Alex is just SOOOO limited with his mobility right now. He wanted to see Speedracer, but it's not in the theaters anymore. We can't go to the Mall of America & ride rides, because that would be too hard on Alex. There is a new Star Wars exhibit at the Science Museum, so that was one thing I thought of. I don't know. It's just all so frustrating!!! Alex has PT M & W each week for 3 months & he really likes his PT people, Nancy & Katie. Max started Speech Therapy yesterday with Kris & that went really well. She came to our house for this 1st one, but the others will be at the school. He'll have therapy once a week for 1 hour. I really really really need to find someone to help out with the kids though, right away. I'm having problems with Alex's insurance, the TEFRA disability insurance through the county/State. They sent me a letter right before Alex's surgery stating "as you know, your TEFRA expired in 2006...". Well, I DIDN'T know that!!!! Evidently they (county/state) just caught this and so now we have to completely reapply for the insurance!!! It is a HUGE HUGE HUGE amount of paperwork, not just for me to do, but also his pediatrician. AND, they want it all done & back to them by June 24. There's NO WAY I can get all that done by then! Especially when I'm taking care of 2 kids. I just need someone to help out w/them for a bit so that I can tackle all of this. Plus, they (county/state) also sent us a huge bill, backdating & billing us for the "Parental Fee" to 2005, as they evidently missed that too. So now they're saying we owe them like 10 Grand. I'm just losing my mind with all this. Who has that kind of money???!!!!! It's all just so much crap to be done, I'm barely keeping my head above water sometimes. Anyway, sorry to vent. If anyone has any suggestions or has dealt with this kind of junk, I would welcome any & all suggestions!!!!! My email is shadyoak@hotmail.com. One great thing is that my MOMS Club has been providing meals for us this week!!! It started last Fri. actually, with Kara bringing an absolutely FANTASTIC homemade chicken potpie & Mon. Shannon brought AWESOME homemade sloppy joes & fruit salad & yummy strudel treats for dessert! These meals are a Godsend, and not having to worry about what to cook takes a HUGE load off my shoulders! I wish they could provide meals forever!! :) THANKS MOMS CLUB!!! Alright, Alex should be finishing up PT any minute, so I'd better close. Hope you're all well! Keep those thoughts & prayers coming!!!!
Love,
Amy

Thursday, June 12, 2008 11:10 AM CDT

Alex had a good night last night! And we're going home today! Alex is going to have PT again shortly, so I only have a quick moment. Yesterday's PT went well, especially the afternoon one. He went pretty far, about 20 ft., with his walker & then back! And the pain in his knee is getting better too, thankfully! He's still getting the Roxicet & Valium every 4 hours, but the time in between is no longer filled with him crying in pain, so that's awesome. Mrs. Jorvig, from Alex's school, came to visit Alex yesterday, as did his babysitter Katelyn. Alex loved getting to see them!! It will be a challenge, to say the least, once we get home to protect Alex from Max! Max is so used to getting to play & climb on Alex. We won't be able to take our eyes off of him for a second! I'd better go for now to see if PT is there. Please keep those thoughts & prayers coming for a continued recovery! And don't forget about the guestbook!
:)
Amy

Wednesday, June 11, 2008 10:16 AM CDT

Alex had a better night last night, pain-wise anyway. He was up 3 times to go to the bathroom between 1-5am though, so we are still tired today. He will be having PT this morning at 11:30 and again at 2pm, so we'll see how that goes today. He just hasn't been motivated yet to get up & move around, like he is after just back surgery. I don't blame him though. It's not like you can ignore pain in your knee if you're walking on it! We'll see how PT goes today. They'd said he could maybe go home today, but I am definitely not comfortable with him going home & still not being able to do any weight-bearing on that leg. I'll make sure to discuss this with Dr. Sundberg when he stops by today. Dr. Perra stopped by earlier & I relayed that info to him, though it doesn't really have any bearing on him, as he's Alex's spine specialist. Never hurts to mention it though!! Alex was in quite a bit of pain at about 8am, but they gave him some of the Roxicet & Valium right about then & once that kicked in he was better. Alex's Papa (Jorge's Dad) stopped by this morning to visit, which Alex loved. One of the teachers from Alex's school, Mrs. Jorvig, called last night & is hoping to visit Alex today, which he'll love! She is one of the 2 Kindgergarten teachers at IHM, though Alex was not in her class. Alex has been watching Star Wars pretty much the entire time we've been here. We only have Episodes 3 & 6, so they've been on a pretty continual loop. It's a grey, gloomy day here today, so that always seems to make the days seem longer, at least to me. Thank you all for all of your kind words & thoughts, and for all of the nice entries in Alex's guestbook. Please keep those coming! He loves to read them!! OK, I will update again later today, after PT.
Love,
Amy

Tuesday, June 10, 2008 8:52 PM CDT

Alex has had a pretty good day today overall. But he's currently in his room screaming bloody murder because he has to get a sponge bath. He doesn't want one, and he evidentally wants the entire hospital to know about it. He's going to be really ticked when he finds out they're also going to take the ACE bandage off of his right knee. It's wrapped around some packing around his knee & working as a compression bandage & Dr. Sundberg said that that could come off & that with it off, he'll have an easier time moving his leg. But that's of little consolation to a kid that just doesn't want to be touched in any type of medical way right now. I stepped away from the room, leaving it up to the nurses because, as I've said before, it's far worse when I'm in there. Plus, after the night he had last night, my nerves just can't take it. And I have to constantly remind myself that sometimes it's ok to step away for a little bit. I talked to Dr. Sundberg today regarding Alex's pain-management, and he has switched Alex off of the Tylenol w/Codeine to Roxicet, which is an oral pain med that he can go home on. Plus, if he needs it while here, he can also have some Morphine. But the Roxicet really seemed to do the trick today. So I'm hoping for a much better night for Alex!! Today his friends Maitland & Mariah came for a visit w/their Mom which Alex really enjoyed! They brought him a couple of cool bug books--one is glow-in-the-dark stickers & the other is invisible ink! He loved them! And they also brought him some nice cuddly stuffed animals. Thanks guys!! Jorge also brought Max for a visit today, and Max was SOOOOO happy to see his big brother!!!! (and me too!) He just ran right up to him & wanted to give him a hug, so we picked Max up so he could. Max also accidentally whacked Alex on that right knee during the visit, so that kind of sucked, and poor Max didn't know what was going on & why his big brother was crying so much. He looked really sad about it, poor little guy. I'm sure this is all very confusing to him, having Mommy & Alex disappear for a few days, and seeing his brother hooked up to machines, though he probably doesn't comprehend the machine part fully. It was really nice to see Max. I've really been missing the little guy. It was really hard to say goodbye to him today without making a scene, but I managed to hold it together. I just can't wait to be back together again as a family. I'm thinking Alex will go home on Thursday, though we'll have to see how PT (physical therapy) goes tomorrow. They came twice today, once in the a.m. & once in the afternoon. At the a.m. appt., the physical therapist--Robin--basically just slowly & gently bent his knee ever so slightly a few times, then she also had him try to stand & do a little bit of weight-bearing on his right knee, which he did for about a millisecond. At the 2nd appointment she brought a walker with. First she did the same range-of-motion & stretching exercises that she did in the morning, then she had him try out the walker. He went about 3 ft. with it & then needed picked up. He didn't really use the right leg at all, choosing to hop on his left leg instead. I shouldn't really say "choosing" I guess. It hurt him too much to bear weight on that leg, so hopping was the best he could do, and that's a great start! We'll try again tomorrow. OK, I've just been summoned to the room because Alex said he will have nothing to do with the bandage being removed unless I'm in the room, though I know that once I'm in there, he'll still want nothing to do with it! We did go to the dog show tonight, so that was fun. And another therapy dog stopped by this afternoon. This was Otis & he was a HUGE mastiff--a very gentle giant. OK, signing off now. Please keep signing the guestbook! Alex always looks forward to reading those entries!
Love,
Amy

Tuesday, June 10, 2008 5:53 AM CDT

Alex had a rough night last night. LOTS of pain in that right knee. The longest stint he slept was from 1:45-5am. I came down here to the computers right now, as the nurse was with him. He was really crying that he wanted to get up now, and he did not want to hear my answer that it was far too early to get up. Sometimes it's better if Mommy steps away & lets someone else calm him down when he's like this, as he never seems to calm down for me. It just escalates. I'm not sure if it's the same for Jorge. I feel helpless when it gets like that. It's so hard to see him in pain & not be able to really do much or anything about it. The nurse had just given him some morphine when I left, so I'm hoping that he'll be asleep when I get back to the room in a few minutes. Yesterday afternoon they switched him off of Morphine to just the Tylenol w/codeine. I think it was far too early to do that. He's just in too much pain in that knee. I believe it's imperative that he still receive morphine, at least at night. He was up every hour from the time we went to bed at 9:30 until he finally got some morphine, at my request, at 1:00am. That knee just makes him scream & cry in pain. And this is before he's even had to put any weight on it. I'm worried what it will be like after he gets PT later this morning. If the pain continues to be this bad, they'll have to send him home with some stronger pain meds than the Tylenol w/codeine, at least for the nights initially. I know they can't send us home w/morphine, but in the past he's gotten Oxycodone & that has helped. I'll make sure I talk to Dr. Sundberg about that today when he stops by. As far as Alex's back goes, he says it feels just fine. Alex's friends Maitland & Mariah are planning on coming to visit him here today w/their Mommy, my friend Michelle, so that will hopefully boost his spirits. I need to stay on the nurses to ensure that they keep up with the pain meds & give them on time, so that the pain doesn't get ahead of the pain meds. Do you know what I mean? If the pain meds aren't given on time & on a regular schedule, then the pain gets so bad that it's hard to control it, even once the meds are given. Then you're constantly trying to "catch up" to the pain with the meds. Yesterday afternoon after I updated this, a therapy dog named Sasha came to visit Alex (and the other kids). She was a Samoyed & soooo incredibly sweet. If you don't know, Samoyed are the BIG & VERY FLUFFY white dogs. She looked like a big walking cloud! I got some pics of Alex w/her, but of course have no way to upload them onto this site. I'll have to ask Gillette mgmt. if there is a way to upload on one of the computers here. It'd be nice to have new pics, wouldn't it? Anyway, just thought I'd give you all an update on my sweet little Alex. Let's pray today is a better day, painwise, than yesterday & in the night! I'm sure I will update again later today, after PT & everything, so keep checking back. Please continue to send those good thoughts & prayers Alex's way. After last night, he needs them!!
Love,
Amy

Monday, June 9, 2008 1:39 PM CDT

Well, Alex is finally up in his room & resting comfortably, eating an orange popsicle & watching Star Wars with Daddy! He is in Room 452-Bed 1 on unit 4W, and the tel.# is 651-312-3150. Visitors and calls are very welcome!!! (But please don't call before 9am or after 9pm.) Alex LOVES visitors and hearing from people!! His surgery started this morning at about 9:00 & done at noon. Everything went really well...the hooks on his VEPTR's were still attached to his ribs, so there was no need to reattach them, thank goodness. Dr. Perra was able to expand each VEPTR 1cm. At the next VEPTR surgery, which will be Dec. or Jan., those VEPTRs will need to be replaced w/new, bigger ones, and most likely at least one additional VEPTR that will go on the left side of his ribs, as that side is now starting to collapse on itself. That new VEPTR(s) will need to be attached to Alex's pelvic bone to secure it, which can lead to problems of the VEPTR hooks breaking off of the ribs, if not just breaking the ribs completely due to the fact that there just isn't the flexibility there in the pelvic bone. If the hooks break off, it means more surgery. Needless to say (but I'll say it anyway), it will be a huge surgery. But back to today's surgery...The VEPTR part went great. The knee part also went really well. Dr. Sundberg removed the old plate from his right knee & replaced it with 2 new ones in different spots. These will "stunt" the growth of the growthplate in the front portion at the base of the tibia, in hopes that the back side of the growthplate will "catch up", eliminating or at least lessening the contracture behind that right knee & hopefully eliminating or lessening the chances of Alex needing to have another Fixator put on, like he had back when he was just 18-mos. old. Only time will tell, so we'll just watch & wait. They are currently giving Alex Morphine for his pain, and Valium for the spasms he gets. As Alex tolerates more food, they'll be able to take him off of the Morphine & replace that with Tylenol w/Codeine, as long as that handles the pain well enough. He won't really be up on his feet today, due to the knee, but tomorrow morning a physical therapist will come to his room to start range-of-motion exercises with him. Once we're home, we'll go to Gillette's in Minnetonka for PT (physical therapy), as I mentioned before. He will get that twice a week for 3 months. I'm not sure how long Alex will be in hospital--it will all depend on how he does on his feet tomorrow. -We pray that the recovery from this knee surgery is way better than it was from the last in Nov. '06. They didn't use any Botox, and I think/hope that will help tremendously! Tonight Alex & I will be playing Bingo, as this is the special event scheduled for tonight by the Child-Life Services people, who have different things schedule each night, at least on weekdays. He was pretty excited about that! And tomorrow is a dog show, though I haven't told him about that yet, just in case he makes a miraculous recovery & hops right up on that right leg & starts running around & they send us home before the dog show! Well, I'd better get back to the room & see how my little guy is doing, but wanted to update everyone on how surgery went & how he's doing. Jorge will probably have to leave fairly soon to go pick up Max from Weeta & Papa's (Jorge's parents). As I mentioned in the last journal update, Alex loves hearing from everyone, and loves visitors too! You can either call his room # or my cell at 612-749-4798 & arrange a time to visit if you'd like! He loves cards too! If you'd like to send a card, you can to 3534 Shady Oak Road, Minnetonka, MN 55305. And don't forget to sign this guestbook! :) Thank you all for all of your continued thoughts & prayers for Alex's recovery!!
Love,
Amy, Alex, Jorge & Max

Friday, June 6, 2008 7:05 AM CDT

Well, here we are again. It's surgery time! Boy, where does the time go? It seems as though he just had surgery yesterday! Anyhoo, I guess time flies when you're having fun, and we try to have as much of that as possible in between surgeries! This one will be #26, can you believe it? Alex's surgery will be this coming Monday, June 9 at Gillette Children's Hospital in St. Paul--ANY AND ALLLLLL VISITORS ARE WELCOME!!! ALEX LOVES VISITORS!!!! Just call ahead of time to find out a good time if you'd like to visit. I will be updating this website from Gillette's & will include his room # and room Tel. #, but you could also call my cell at 612-749-4798. I am unsure of how long he'll be in hospital this time around, though I'm hoping no more than 5 days. If you'd like to visit Alex, but are unable to while he's in hospital, visitors are TOTALLY welcome at our home, too!!! Alex truly does love visitors, and it really helps to raise his spirits! Cards are awesome too, if you're unable to visit!! Alex just loves to know he's being thought of! Dr. Perra will be doing the last expansion ON THESE CURRENT VEPTR RODS (the rods will need to be replaced w/new, bigger ones at the next surgery in Dec./Jan.) and Dr. Sundberg will be operating on Alex's right knee. The knee surgery will entail Dr. Sundberg removing the current titanium plate that's in Alex's right knee w/two different plates. These will hopefully address the flexion contracture behind his knee better than the current plate. The last time Alex's knee was operated on (Nov. '06) to put in the current plate, the recovery was HORRIBLE. That Dr. had told us Alex would be up & running that same day as the surgery, and it was nearly 6 months before he could get rid of his walker & walk on his own. It was brutal. So let's pray that things go better this time around. We didn't care for that doc from the Nov. '06 surgery, as we didn't think he had Alex's best interest at heart, but we really like Dr. Sundberg. He knows about the lengthy recovery from that previous surgery, which he said is COMPLETELY out-of-the-norm & atypical(sounds like Alex, doesn't it!?) so all he can tell us is that TYPICALLY, kids having this type of knee surgery are up & about like normal w/in 1-5 days, but with Alex's history, there are no guarantees. Comforting, isn't it? I HAVE instructed them to NOT use any Botox on Alex's knee. I truly believe that was a large part of the problem w/Alex's recovery from the last knee surgery. It seems that with Alex, his muscles & tendons react the opposite/atypical way (again, sounds like Alex!) to Botox where, instead of it loosening things up, it tightens things up considerably. So, NO BOTOX!!!!!I already have physical therapy set up for 3-months post-op for Alex, so that should help too. Alex's usual Physical Therapist, Melissa, is out on maternity leave, so we'll be missing her considerably! I think this therapists name is Katie, and I'm sure she'll be great! Jorge's Mom will be watching Max on Monday so that Jorge can be at the hospital with Alex & me. He'll have to take days off of work to watch Max the other days. So hopefully Alex won't be in hospital too long, and hopefully I won't need to carry him everywhere once we're home, as I don't have any respit care set up & am not sure how I'd be able to do that with Mr. "I'm-extremely-active-all-the-time" Max at home too! But as always, we'll make do! Please keep Alex in your prayers in the upcoming days for a safe surgery & speedy recovery!
Alex GRADUATED from Kindergarten last week, and his last day of school at Immaculate Heart of Mary Catholic School was on Wed. of this week! Can you believe it??? We're going to have a first-grader on our hands come fall! I can hardly believe he's nearly 7!!!! His graduation celebration was wonderful, and Jorge's parents were able to attend as well, which Alex LOVED!! I can't remember "graduating" from Kindergarten back in "the olden days", can any of you that are around my age? Then again, I can't even hardly remember what I had for dinner last night, so that's really not saying much! :) He's really going to miss seeing his buddies every day, so we'll have to make sure we schedule lots of playdates! I got an email from a school-Mom friend yesterday, and Alex's classmate buddy Thomas G. wants to have Alex over today to play XBox, so hopefully his Mom & I can figure out a time around Alex's pre-op physical today. Boy, video games are all the rage with these boys!!! We have a Wii, which Alex gets to spend 1-hour on a day to play his beloved "Star Wars" game on. We have to REALLY limit the time, or that kid could stare at the TV & play all day!! His classmate buddy Christopher came ove last Sunday for a playdate & they played together. It was pretty cute to listen to! They also helped me frost some chocolate cupcakes, which made for some really cute pictures! :) Alex LOVE LOVE LOVES Star Wars!!!! His favorite character (at the moment anyway) is a Jawa, so he frequently pretends that he is one, and says he wants to be one for Halloween this year, so we've already asked Weeta (Grandma Molina) if she could make a costume for him, as there aren't any out there to be purchased. Luckily, Jawas just wear brown hooded cloaks, so at least he doesn't want to be Jabba the Hutt or anything! He's so into Star Wars, it's crazy! He has seen all of the movies & is thankfully able to distinguish fantasy from reality, so he doesn't have any nightmares of Darth Vader coming to get him or anything!
Anyhoo, just wanted to update everyone on what's coming up in the Molina household! Thank you for keeping Alex in your thoughts & prayers! Don't forget to sign the guestbook!!
Love,
Amy, Jorge, Alex & Max
p.s. Sorry about the really old pics on the homepage & pic page! My hard drive is full & I haven't been able to upload any new pics! Hopefully soon!!!

Wednesday, April 23, 2008 5:07 AM CDT

Good morning!
Well, I couldn't sleep, so I figured I may as well do something productive & that is long overdue! Plus, it's quiet, so I won't wake anyone else! :)
Gosh, I guess the last "real" update was at the end of January, aside from the brief one on March 6, so I'll try & fill you in a little bit on what's new w/Alex & the family since then...
One major bright spot is that there have been NO recurrences of the staph infection in Alex's chest!! YAAAAY!!! Jan. 30 brought a follow-up visit w/Alex's spine surgeon, Dr. Perra. The x-rays show that everything is as it should be & that none of the VEPTR hardware has come loose from his ribs. His scoliosis curve also hasn't changed. :) Alex's next VEPTR is coming up on June 9, which is coming up WAY too soon. Boy, time sure flies between surgeries! This June 9 surgery was supposed to only be a lengthening of his VEPTR's, but now something else has been added. :( The titanium plate that was put around Alex's growth plate on his right knee clear back on Nov. 20, 2006, called a "figure of eight" plate, isn't really doing it's job anymore. It DID help to realign Alex's knee so that it is now in the right place, instead of bulging out towards the inside of his leg. Therefore, Alex's lower-extremity orthopedic surgeon, Dr. Sundberg, has proposed we remove that plate & replace it with 2 others, but in different locations. These plates will address the right knee contracture that Alex has had since birth. Hopefully these will work & we can get that leg straightened out (again)! Dr. Sundberg does believe, however, that at some point in the future, whether it be near or far, Alex will need to have another external fixator put on his right leg. This is a type of "halo" device, with pins that go through his bones, all the way from his thigh to his ankle, that then have external scaffolding of graphite or titanium rings (halo's) attached to them. Then behind the hinge on Alex's knee would be a battery-operated motor that will stretch the tendons behind Alex's knee 1mm to 2.5mm per day. The last time Alex had a fixator placed was June 4, 2003. I'm getting ahead of myself here though--he doesn't need the fixator yet, and who knows, maybe he never will! Anyhoo, back to present-day...We really hope these new plates will fix the contracture. I'm REALLY REALLY apprehensive about this knee part of the surgery. When he had the first plate installed back in Nov. '06, the recovery was VERY VERY hard. Dr. Dahl had told us he'd be up & running the same day on his own, but it was nearly Easter before he could finally walk without the use of a walker. I really pray that that won't be the case this time, and that recovery will be much quicker. The surgery, however, will take longer w/this added procedure. Dr. Sundberg will go first, then Dr. Perra will do the VEPTR lengthening. This will be the final lengthening of Alex's current VEPTRs, as they will then have reached their maximum expansion. This means that at the following surgery, which will be done sometime during this next Christmas break from school, these current rods will be removed & replaced by new, bigger VEPTRs, and the every-six-months expansions will resume. Not looking forward to that one either, as that will mean the cutting of muscles, perhaps bone, etc. The recovery is quite hard. But look at me, I'm getting ahead of myself again!...What do you say we move on to non-surgery related topics?!
Our family belongs to this great organization called Hope Kids (www.hopekids.org). HopeKids provides ongoing events & activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions. We have been fortunate enough to go to many fun events with this wonderful group! Feb. 17 we were able to go see "The Wizard of Oz" performed by Lakeville N. High School, and have been to several other events since then that I'll write about as I get to those dates.
Oh look! We're at the next date! Feb. 21 Alex & I went with Hope Kids to see "The House at Pooh Corner" at the Stages Theatre in Hopkins. What a GREAT theatre company!! They did a phenomenal job, and Alex loved it! Then, on Feb. 26 Alex & I again joined Hope Kids, this time to see the Smucker's Stars on Ice ice skating show, and we had a blast! Alex REALLY loved it, because he got to stay up late on a school night! :) March 15 was a busy day for Alex & I! In the morning he & I went with Hope Kids to see the movie "Horton Hears a Who" (awesome!) and then that afternoon, he & I went to the Minnesota Children's Theatre Company's performance of "If You Give a Mouse a Cookie". OH MY GOSH!!!! Can I just tell you that Alex & I both had tears running down our cheeks from laughing so hard!!!! The Children's Theatre ALWAYS does a great job, but this one was HILARIOUS!!! It was just 2 guys ("mouse" and "boy") up to some majorly hilarious hijinks! If you live in the area or are going to be traveling to this area and have never seen a performance at the Children's Theatre try to get that on your schedule!! The next play up is "The Magical Mrs. Piggle-Wiggle". I saw that w/my Mom & Dad a few years back when they were up for a visit, and that too was phenomenal! Alex & I will be going to see that TWICE! Next Sat. (May 3) we'll see it on our own, then Alex's class is going to see it as well for a field trip, and I'm going along as a chaperone! Max will have a babysitter for that one! March 17 brought another wonderful Hope Kids event, and this time Jorge was even able to join us! :) Max had a babysitter again, poor little dude. He's just too little yet to enjoy (or let others enjoy!) these fun events! This event was tubing at the Buck Hill ski area here in the twin cities. Luckily, the weather was "warm" for us, around 35 deg., and we all had a BLAST!!!! I'd never been tubing before, nor had Alex and we LOVED it! It was so awesome to actually have Daddy there with us too! They also had a nice big bonfire and all of the fixin's for s'mores for us to enjoy, as well as nice hot coffee & cocoa! I have a couple of nice pics from that night, and if I ever figure out how to clear out some space on my hard drive so that I can upload some new pics, I'll be sure to post one of those on the photo page! :)
On Feb. 5, Max, who is now a strapping 21-month-old, had an appointment with Alex's ENT (ear, nose, throat doctor)at the U of M, Dr. Rimmel, as well as a hearing test w/the audiologists. Unfortunately, Max completely failed his hearing test, and Dr. Rimmel found tons of fluid in both ears. (I had been concerned about that fact that Max's speech wasn't progressing, and that's what prompted my calling Dr. Rimmel.) The fact that there was so much fluid in Max's ears meant that for his whole life, everything that he heard, he heard as though he was under water, giving everything a very muffled sound. It was determined then that Max would need surgery to place PE tubes in both ears in order to drain the fluid. Yes, that's right. I said MAX would need surgery. Because we didn't already have enough on our plates! :) Hopefully this will be the one & ONLY surgery Max will ever need!!!! That surgery was done on March 24 as a same-day surgery, meaning Max went home the same day. It went great & Max was off to the races later that day! At his follow-up visit on April 8, however, Max still failed his hearing test, prompting concern that he might have some permanent hearing-loss. Well, as you might expect, that news just sent me into a tail-spin downward & my depression reared its VERY ugly head. Thankfully, I'm no stranger to depression & recognized the signs immediately & did what I needed to do in order to be able to pick myself up by the bootstraps once again, and within a few days was feeling back to my normal chipper self. So, as far as the hearing test results go, the question is how accurate are those results? Did Max really fail it due to hearing loss, or did he fail it because he's a 20-mos old (at the time) & did whatever he wanted to do, not having been conditioned ever to do this type of test. Well, that question will be answered tomorrow. He's having another test done called an ABR, Auditory Brainstem Response. He'll be lightly anesthetized with something like Chloral Hydrate, just enough so that he's "out" & not squiming, but not FULLY out like w/general anesthesia, therefore he can go home the same day. Anyhoo, after the anesthesia they'll do the test. These results should be 100ccurate, as none of the variables will depend on any physical reaction from Max. Jorge & I truly believe that Max DOES NOT have any type of hearing loss. He can hear us easily from across the room & fully comprehends what we tell him or ask him. It's just that for so long, everything he heard was so muffled that his speech still comes out sounding that way. We truly believe that all Max needs is a good, heavy dose of Speech Therapy. I already have the ball rolling on that with the school district & am waiting to hear back on a date they'll come to do the evaluation so we can get started. I guess we'll just wait 'til tomorrow to do the test & hear back on the results. Please keep Max in your thoughts & prayers!
*****If you're reading this & wondering about the abrupt end, it's because Max just woke up and I need to start my REAL morning! I'll try & finish this up later today!!
Amy
***********
OK, so I didn't get it finished that day...But now it's Friday (TGIF!) and I'm back! First, I'll just tell you that Max's hearing test yesterday went great, and he has perfect hearing in both ears, just as we suspected! YAYYYY! Now we just have to get that speech therapy going!!
I think I left off at the tubing in March, so let's see what else has happened...Alex is doing FANTASTIC in school, and getting VERY high marks on his report cards! He's soooo smart, it just blows my mind! They tested him through the school district & determined that he can read at AT LEAST a 4th grade level. And he LOVES to read! So does Max, incidentally. He's to the point now that he doesn't even want me to read to him--he wants to do it himself, and will sit for a really long time going through books & pointing at the words and "reading" them aloud as he goes along. We had ECFE today (Early Childhood Family Education--like playgroup but with learning) and the teacher mentioned to me how Max likes to just sit down in the "library" area and will just quietly read through every book there. He LOVES books! Now we just have to get him to speak!
April brought another Hope Kids event for Alex & I. We went to the Stages Theatre performance of "The Reluctant Dragon" and it was FANTASTIC!!!! Alex really really liked it & there was a lot of giggling going on in the audience! I'm hoping to get Alex into one of their (Stages Theatre--www.stagestheatre.org) week-long day camps this summer! There is a dinosaur themed one that I think he'd have a blast in, and who knows?? Maybe that will lead to Alex starring in a Stages production some day! :) Well, that pretty much brings us to present day! It's quite cool & rainy here right now. I'm baking a cake upstairs & the yummy smell is just permeating the house! Rainy days are good days for baking! I still have to make the frosting, but thought maybe I'd save that so that Alex could help after school. He loves to help me bake and cook! Max is napping right now, and I think once he's up we'll go to the library. He LOVES the library!!! Alex has a bday party to go to this Saturday for his little friend Mira, whom he's been friends with since they had preschool together back in '05-'06. My wonderful friend Shubi is coming down from Duluth this weekend for a visit, so she & I are planning on squeezing in a dinner tomorrow night. It will be great to see her, as I haven't seen her for a long time. She's is my oldest (meaning we've known each other the longest of any of my twin cities friends) and dearest friends! And it's always nice for me to have a little one-on-one adult conversation w/out kiddo interruptions! Gotta remember to sometimes take time for ME, so that I can be the best Mommy I can be for the boys! :)
This coming Monday, my parents, a.k.a. Grammy & PopPop, are coming to visit until Friday. We haven't seen them since Thanksgiving! It will be great to see them again! Alex is SUPER excited, and so is Max--or at least he gets really excited whenever I show him pictures of them! We still have our sweet kitty, Cookie. She's 11 this year & I have to take her to the vet next week for her annual physical. And next Saturday is going to be a very busy day for us! Our friend EJ works for Cargill in South Africa, and he is coming to visit with his wife Cintia (whom he met while working for Cargill in Sao Paulo, Brazil) and their 4-month-old boy, Axel! We are planning to go visit them at EJ's parents house Saturday morning. We haven't seen EJ for about a year, and we've never met Cintia or Axel, so I'm really excited for that! Then that afternoon, Alex & I go see "The Magic Mrs. Piggle-Wiggle" at the Children's Theatre. The next day, Alex & I are going to see Dan Zanes & Friends in concert at the Fitzgeral Theatre in St. Paul. VERY excited about that, too!! Dan Zanes used to be in the band the Del Fuegos, and now he makes FANTASTIC kids music w/a LOAD of great musicians! We're going to have a blast! On May 6, XM Radio (satellite radio) and the Children's Miracle Network are going to interview Alex at Gillette's!! He's become quite the little celebrity!! His interview will be aired on XM Radio Kids I believe on May 17. This will be part of a fund-raiser teamed up with Wal-Mart, where Wal-Mart will have "Miracle Balloons" in their stores, and for every one purchased, money will go to the Children's Miracle Network. It's a great cause!! We are also going to take part in the Children's Miracle Network Walk-a-Thon at Como Park in St. Paul on May 18. May 10th is bringing another TOTALLY AWESOME Hope Kids event. This one Jorge will be coming too as well, but poor little Max will be with a sitter. He's just too young yet to be able to enjoy--and let US enjoy--these events. He'll have more fun playing with the babysitter! This event is their annual Video Game Day and it's going to be AWESOME! It's held at Midwest Home Media, which is essentially this huge warehouse that has been made into this lush, multi-million dollar home, with TONS of gaming systems--Wii's, Xbox 360's, you name it, they have it, with loads of plush chairs & couches, etc. And they will be open for only Hope Kids that night, so it will be a totally safe environment. Plus there will be pizza! :)
Anyhoo, overall, we're all doing great! I hope I haven't rambled on too long on this update--I know it's a big one! I hope that all of you are also doing well. Please don't forget to sign Alex's guestbook, and feel free to shoot off an email as well! We love to hear from all of you, especially Alex!
HAPPY SPRING TO YOU ALL & WE HOPE TO HEAR FROM YOU SOON! :)
Love,
Amy, Jorge, Alex & Max!

Thursday, March 6, 2008 12:52 AM CST

I guess this isn't much of an update, at least in the journal sense of things. Every year for the past 10 yrs. a radio station up here called KS95 has teamed up with Gillette Children's Hospital & the Children's Cancer Research Fund to do the KS95 for Kids Radiothon, with proceeds benefitting Gillette's & the CCRF. And each year a few kids are selected to be featured in stories and interviews, on the radio & in photos. These children are nominated by various hospital & medical staff as being "remarkable" children (not that all children aren't!!). Well, this year, Alex is one of those featured kids!! The Radiothon began today & runs through Saturday. I will be working the Radiothon on Saturday at Southdale Mall in Edina, MN, answering phones from 1:30-4pm. Alex's interview played on the radio this morning, but you can read Alex's story & listen to the interview that Moon & Staci (the KS95 radio personalities) did with Alex & me by clicking on the link I'll put below. Just click the link, read Alex's story & at the end of the story will be another link "Listen to Alex's Story Here". Click that & you'll be able to hear it. They did a REALLY REALLY great job with it there at KS95. Have a Kleenex ready. I cried, and it takes A LOT to make me cry nowadays. I hope you're all doing well! Keep those thoughts & prayers coming! Alex's next VEPTR surgery is going to be June 9th. Let's pray that nothing else comes up--medically speaking--before then!! If the link doesn't work, then just type the address below into the address box at the top of your page!

http://www.ks95forkids.com/story34.html

Take care, and God Bless!
:)
Amy

Tuesday, January 29, 2008 1:24 PM CST

Hello!
Can you believe that January is already nearly over??? Where does the time go? Anyway, I hope you're all doing well & staying warm! Alex is doing well. He was so happy to get back to school & ride the bus again! And his friends were all SUPER happy to see him!! When we walked into his classroom on that first day back, he was nearly mobbed by his classmates! Miss Donnay (the teacher) had to actually tell the kids to give him some space! They were all so cute. They'd all made tons of pictures for him, and they had decorated his cubby!! It was good to be back!

Alex had his follow-up appointment yesterday w/Dr. Hess to check and see how the surgery site was healing. It's looking great, and Dr. Hess said that we can be done with the dressing changes! I can't tell you how happy I am (Alex, too!) to be done with those! Even with the new strategy for the dressing changes, Alex STILL had TONS AND TONS of anxiety whe it came time to do them. It's kind of strange now---no medicines, no dressing changes...This morning it felt like I was forgetting to do something! The morning was just too easy & drama-free! :) That's fine by me. We could all use days like that! But then it's back to reality, for us anyway. Alex has a follow-up appointment tomorrow with Dr. Perra, his spine surgeon at Gillette Children's Hospital in St. Paul. They'll take new xrays of his spine, Dr. Perra will measure Alex's curvature on the xrays, and then we'll talk about Alex's next surgery date for the lengthening of the VEPTR rods. It will be sometime at the end of May or beginning of June, I'm sure. That will be the 6-month mark from the last lengthening. I'll have it scheduled for right after school's done for the year. I don't want Alex to miss the end of his Kindergarten schoolyear! He'd be really bummed. This will be the last lengthening of these particular VEPTR's, as they will have reached their maximum expansion. So the next VEPTR surgery after this one, which will be sometime in Nov. or Dec.--sometime during a break so he misses as little school as possible (hard for me to process that he'll be a 1st grader then!!)---will be a MUCH bigger deal. They'll have to take the old rods out & put new ones in, which will entail more cutting of the muscles & such yucky stuff. I know it seems far away, but time really does fly when you live surgery to surgery. I just have to remember to keep my thoughts on the here & now, not drive myself nuts worrying about the future! I took a "test" today on the internet to determine my virtual age, as opposed to my biological age(37). The results were that my virtual age is 17.2 years old, and I'm expected to live to be 94.8 years old. HA!!!! Not if I drive myself nuts worrying about the future! Some of my friends from my MOMS Club that I belong to provided us with really yummy meals for a week & a half after this last hospital stay, and that was SOOOO incredibly awesome! It took away a lot of the stress that comes after a surgery! THANKS YOU GUYS & MOM'S CLUB!!

We've been keeping busy doing fun stuff as well. Last Sat. was the Bingo Bonanza at Alex's school (Immaculate Heart of Mary Catholic School--or IHM for short), so Alex & I went while Jorge stayed home with Max, as the Bonanza didn't start until 6:30pm. We ate hot dogs, Alex ate more candy than I'd care to admit, and we played Bingo. Didn't win a darn thing, but we had a fun time! Alex's friend Madeline was there w/her Mom, so we all sat together. And Alex's babysitter, Katie, was there w/her whole family, so Alex hung with them some while I manned the Bingo cards. Then on Sun. Alex & I went to a special event called "Rock the Cradle" at the Minneapolis Institute of Arts and the Minneapolis Children's Theatre, which is located in the same building. It is put on annually by the radio station, The Current, which is part of Minnesota Public Radio. They had various live music, TONS of different art projects the kids could do, the kids could help make fleece blankets for the United Way, there were storytimes, Alex got to be on the radio...It was a ton of fun! Jorge stayed home again with Max, who is working on another doozy of a cold. Plus, those kinds of things (i.e. big crowds) are definitely NOT Jorge's cup of tea. Alex & I enjoyed it though! But I think our favorite place became the room where you could make the blankets. It was nice & cool in there, and QUIET in comparison to everywhere else. And they had a whole ton of coloring pages & markers for the kids to do. OH! And the other fave spot, especially for Alex, was in the room that had the Kids' Disco! The DJ's from The Current all took turns playing really cool & fun kid-friendly music, complete with Disco Ball & fun lights. We had a blast dancing our hearts out! That's how we closed the day out. Little Alex was so tired at the end that he could barely walk! And he needed Tylenol, as that kind of activity is really hard on his back. But he loved it! And so did I. I don't know what this next weekend holds. Maybe the whole family will go to the Science Museum. Alex has been wanting to go there again for quite a while, and I think Max would enjoy it too, just due to the fact that he can walk around & touch things! Anyhoo...I think I'll wrap it up for now. Max will be waking from his nap soon & I wanted to get a little more reading in before he does. Hope you all are well! Please continue to keep Alex in your thoughts & prayers. And please keep signing in on the guestbook!! :)
Love,
Amy

Thursday, January 17, 2008 6:48 AM CST

YAY! We are home! It feels so good to be home again, and sleeping in our own beds! We actually had Alex's dressing changed & him in bed by 8pm last night! He's still snoozing soundly. I, on the other hand, couldn't sleep past 5:30am, so here I am on the computer. But I was asleep by 9:30pm, so I still got a good sleep! Wow, it was SOOOOOOO awesome to see Max again. I missed him so much, but just tried not to think about it so that I wouldn't get really really sad. We got to Jorge's parents finally about 4pm to pick him up, and he was SO SO SO excited to see us, especially me. He ran up to me & hugged me so tight, then just kept touching my face & looking into my eyes and laughing, babbling, then hugging me again. I just picked him up and hug hug hugged him so tight! It just took my heart to a different place. Alex got lots of hugs too, but he made me feel extra extra special. Last night, after Jorge got home, I just sat on the couch & watched Jorge play with the boys, with the boys just giggling and giggling, and just thought "THIS is the life!" The dressing change went really well last night. I did it, and Jorge watched so that he knows how to do it. I'll need to get Alex up by 7:30 so that we'll have time to fit in the dressing change, getting dressed and breakfast before his bus comes to take him to school. We'll have some busy busy mornings for a while--as if they weren't already hectic enough! Jorge will have to help, if only to watch Max if he's awake at the same time. A lot of times he sleeps until at least 8am, so if that's the case then it won't be an issue. Alex is excited to go back to school, and I think he'll be even more so once he's on the bus & seeing all of his bus-buddies! It was so great hearing from all of his friends on the guest book!!! THANK YOU!!!!! There will be a home nurse stopping by, probably a couple of times a week, if not three, for the next 2-3 weeks to assess Alex's wound & make sure it's healing correctly. It will be nice to have an extra set of eyes to help determine that. I think it's looking good, though it did bleed more last night during the dressing change. That's the first time it's bled, actually. But hopefully that's normal. The nurse will be coming by today between 5:30-6:30, so I'll be sure to mention it to her/him. There will also be a home medical supply company stopping by & bringing all of the dressing change supplies, though I'm not sure when. It must be sometime today, though I haven't heard from them. I hope it's today, as the hospital only sent us home with enough supplies for last night's & this morning's dressing changes!! If I don't hear from them by noon, I'll give them a call. My MOMS Club is providing us with meals for the next 2 weeks, and I can't even begin to tell you what a relief that is!!!! Yesterday, as we were stuck in traffic going to pick up Max, I just kept thinking in my head "What on Earth am I going to fix for dinner?????!!" and stressing about it, then I remembered that my friend Ging was bringing us dinner! We had some yummy quiche & pasta. The boys just gobbled up that pasta like there was no tomorrow! THANKS GING!!! THANKS MOMS CLUB! OK, it's now a little after 7am, so I'd better get back upstairs & get ready for the day. Lots of cleaning & laundry to do on top of everything else!! If we ever win the lottery (HA!!), the first thing I'm doing is hiring a cleaning service!! THAT would be a Godsend!! As my Mom can confirm, cleaning was NEVER my favorite thing to do, nor my forte! I'm sure that dream will always remain that--a dream. But without dreams, what kind of place would this world be? Thank you to you all for everything...your thoughts, prayers, kind words, guestbook entries...They all mean so much to us! Keep 'em coming please!!
HAVE A GREAT DAY!!!
:)
Love,
Amy

Wednesday, January 16, 2008 10:35 AM CST

Hey Hey Hey, We're going home today! It's been a long trek, and it will be good to get back to our own home & our own beds! And Alex will be back at school on Thursday! Alex is still sleeping right now. They had to move us to a different room at 1am in the night last night, so I'm letting him sleep in. We were in a private/isolation room, but the unit was going to be receiving 3 highly contagious kiddos from the ER, so anyone that was in an isolation room that didn't need to be was moved. No big deal, other than the fact that we didn't get to bed then until 2am! It was sort of good though, in that it made me pack up all the gazillions of things we've accumulated while here. Now I'm all organized & ready once they get all of the discharge stuff ready. I'm going to let Alex sleep until then. Then I figured we'd go out to eat somewhere special (I'm hoping for Leaning Tower of Pizza!), then go pick Max up from Chita & Neto's (Jorge's parents). It will be great to see the little guy again! We've been missing him! Yesterday we came up with a new strategy for the dressing changes. We are no longer going to be doing any packing or unpacking of dressings. Instead, I will be squirting some Technicare soap--an antiseptic soap--into the wound, then rinsing it with sterile saline. Then I put a 4"x4" piece of sterile gauze over the site, and then over that I put a stockinette, which is a really stretchy shirt kind of thing. This way, all adhesives are removed from the picture. The nurse did the first new-style dressing change yesterday so that I could watch, then I did the one last night. There was still a ton of anxiety, and it still took 3 of us--2 to hold him down & then me--but it only took 40 min. instead of 60. I think the dressing changes will go much better once we're home. Alex slept yesterday until 12:30pm due to the late night before! He just woke up in here a minute ago, and the nurse aide is doing his vitals right now, then I suppose we'll need to do the dressing change. I'm going to let him wake up a bit first though. Maybe eat a little, if he wants. Then I'll get him dressed, and off we'll go! It's kind of surreal. You lose such touch with reality while here. It's hard to know what day it is. Save for the parent lunch that I went to with other hospital parents last Friday, I haven't seen or been in the outside world since coming here last Wed. I eat, sleep & drink hospital, just like Alex. Our world has just been Room 201. Except now it's Room 212, and we're rooming with an itty-bitty baby boy. A very quiet itty-bitty baby, thankfully! He actually reminds me of Alex when he was a newborn. He has a lot of the same equipment & everything that Alex had while in the NICU. And he even has a shock of dark hair like Alex did. Anyway, not looking forward to the dressing change. It still causes him tons of anxiety, and I hate to do that. But we have to do what we have to do, right?
As you may know, Alex's official diagnosis from a long time ago is Multiple Pterygium Syndrome, and while here I was doing some research on it, and I'm going to put a link on here to a site that talks a lot about it. The syndrome is not related to a chromosomal disorder, so there's no TRUE way to test for it. But the majority of Alex's symptoms fall under this. Now, he does not have all of the gazillion of complications that you'll read about on that site, just so you know. Mental disability is one of the things listed, but those of you who know Alex, and even those of you who haven't met him, know that that's not the case with Alex, thank the Lord. Anyway, here's that link:

http://www.wrongdiagnosis.com/m/multiple_pterygium_syndrome/intro.htm

It doesn't actually provide the link here, you'd have to type it in, but there is a spot on the home page for links, so I'll put it there too, and I think you'd be able to just click on that. Anyhoo, we're very happy to be going home! And hopefully this won't come back this time!! Keep those thoughts & prayers coming! And keep checking back to see what's happening with Alex! I'm not as good at keeping regular updates when we're at home, as I'm pretty busy, but keep checking. I'll get to it eventually. Just think of no new news as good news! Usually when I update often, it means that some new thing has cropped up. Thank You for all of your continued support! And keep signing that guest book! Alex loves to read the entries & know that you're thinking of him!
:)
Love,
Amy

Monday, January 14, 2008 9:41 PM CST

FOR THOSE WHO HAVE ALREADY READ THIS UPDATE FROM MON., PLEASE SEE THE ADDENDUM AT THE END OF THE JOURNAL ENTRY.


Well, I'm sure you've all been waiting on pins and needles for my latest update...HA! :) It's sounding like Alex will finally be going home tomorrow, unless something else bizarre crops up. Let's pray it doesn't!! They did Alex's first dressing change last night, and gave him morphine prior to it. Overall, it went well. I think the pain was fairly minimal, thanks to the morphine, but the anxiety was definitely huge. Here's what needs to be done for the dressing change (If you're squeamish, look away!): At the site where the infection was, it's now just an open hole. Stuffed into that hole is some sterile gauze dressing. In order to change this, you first must pull out the old, yucky stuff with sterile tweezers. It looks like you're pulling out a big tape-worm. Then you take some new, sterile gauze dressing that has been soaked in sterile saline & stuff it back inside the hole with a sterile q-tip. Fun, huh? The nurse did it last night, and the doctors did it this morning (They actually woke Alex up at 7:30 to do it--harsh!!--when I had stepped out the room for a minute to get some ice water!! HUGE NO-NO!) But tonight I have to do it, and I have to tell you that I have as much anxiety about it--or more--than Alex. The last thing I ever want to do is cause my little Alex any pain or anxiety. But they will not send Alex home until I am comfortable doing the dressing changes. They just gave him some Oxycodone for the pain about 10 min. ago, so in 20 min. it will be my turn. I'm sure I will do fine. I have to, or Alex doesn't go home tomorrow.
Let's see...what else happened today...Actually, let me tackle yesterday first...Alex's friend Madeline from school came to visit with her Mom/my friend Jen & little brother Tyler, which was really nice! The kids played with the Play-Doh that a really nice volunteer by the name of Katelyn bought for Alex. Sunday also brought a visit from Jorge! Alex was really excited to see his Daddy, and Daddy was equally excited to see Alex! Max stayed with Jorge's parents for a while so that Jorge could come.
OK...today...Alex's friend from school, Luke, came to visit this afternoon with his Mom/my friend Kathy. Alex really enjoyed that! There was a special art activity going on in the playroom right when they arrived, so the boys got to do that together. Luke made his picture for Alex, which was really sweet! It's now hanging up in Alex's room next to the pictures that Madeline & Tyler made for him! Then the boys came back to Alex's room & colored in their dino coloring books for a bit while Kathy & I chatted. It was nice having someone to talk to other than medical personnel! Thank goodness for my friend Jen visiting yesterday too for some much needed conversation! I've made some friends here in the hospital too--other parents--but conversations with them always seem to be medically related, so it's nice to just chat about whatever! Alex also did a "dig your own dino" thing--one of those things where you get a big block of plaster that you have to chip chip chip-away at in order to find some plastic dino bones that you then have to assemble. I have to say that these things are NOT my favorite things to do, and it seems any time I've done them with Alex I've walked away with bloody knuckles from scraping them against the plaster or sand--whichever it's made of. But Alex likes them, so I bought him one in the gift shop for being so brave with his dressing change last night. As it so happened, right when we got back to his room from the gift shop, a volunteer named Charlie stopped by to see if Alex would like to play, so he did the dino thing with Alex! Alex's bed was absolutely COVERED in plaster by the time they were done, and it took them nearly 2 hours!! The nurses definitely had to change Alex's bedding after that! Then tonight at 6:30 there was a Winter Party for all of the kids on 5th & 6th floor. There were all kinds of crafts that the kids could do, plus there were cookies and cupcakes that the kids could decorate & then eat. Alex got to decorate a cowboy hat and by far made THE COOLEST looking hat ever. I took pictures of it. I tried today to upload new pics on the photo page, but for some reason I was only able to upload a new pic on the home page & not the photo page. Once we're home I'll upload some new pics & you can see the hat! Alex has also befriended a little 10-mos. old boy named Benjamin that is 2 doors down the hall from us. I think it's really good for both of them, because Benjamin has a 6-yr. old brother at home that he misses, and of course Alex has Max that he misses, so this way it's like they don't miss them so much. Alex makes Benjamin giggle a lot, and he gets really excited when he sees him. He reaches out for Alex & loves to give him big hugs. I've got pics of them as well that I'll put on the site too.
___________________________________________________________

WOW. I just did my first dressing on Alex, and can I just say--and pardon my french--THAT ABSOLUTELY SUCKED. Alex was absolutely terrified and fought me tooth and nail. It took 2 people other than myself to get it done, and they had to hold him down. He kicked & screamed nearly the whole time. I was sweating bullets, I was so terrified that I was going to hurt him. It took an hour, whereas it took about 5 min. for the docs to do it. Plus, he fought so much that his IV came out of his hand. So now it's midnight, and the vascular access guy has just shown up to put the new IV in. Because we haven't had enough drama & anxiety today. I don't know how on Earth I'm going to be able to do this at home with just Jorge. It's going to take some sort of miracle for Alex to suddenly just relax enough tomorrow morning & let me do it. If he fights so much tomorrow, they won't let him go home. OK, it's now 12:12am, the new IV is in, the aide is here to check Alex's vitals, and then we are finally hitting the hay. I've been up since 5:00am, so I'm WIPED. I don't know where Alex gets his stores of energy from. But he's a trooper. Our little Hercules. He amazes me every day. Well, let's hope that tomorrow brings no fighting the dressing changes so that we can go home. I'll update more tomorrow to let you all know how the dressing changes went & if we're going home. Good night, and God Bless.
Love,
Amy
***************************************
ADDENDUM: ALEX WILL NOT BE GOING HOME FROM THE HOSPITAL TODAY (TUES.). We (the docs & I) are trying to come up with a new strategy as far as the dressing changes go, and also a way to address the terrible anxiety that goes along with it. Hopefully he'll be going home tomorrow. I'll keep you posted. Keep those thoughts & prayers coming!
Amy

Saturday, January 12, 2008 2:57 PM CST

Well, lots of news to pass on, some good, some not so good. The good news is that there is no infection in Alex's bones. The plan then was for Alex to go in for a procedure this morning to open the infected area up & really clean it out, and to get rid of all of the granulation tissue that had accumulated in there. Dr. Hess thought that maybe this tissue was causing inflamation.
So, Alex went in for his procedure this morning at 9:30. They actually took him into the O.R. this time, so there's surgery #25. When Dr. Hess got in there to clean up, he realized it was much more involved than he thought. Instead of taking just 10 min., it took a little over an hour. Not only was there the area of infection, but next to it was what they call an epidermal tract or dermal sinus tract. These are really long tubes that run through Alex's body. Alex has dealt with a lot of these in the past, some of them having benign tumors at the ends of them, and has to have had them removed. It's quite rare for a person to have the amount of these tracts that Alex has had/has, especially in the areas he's had them. This one was really huge & wound all the way down through his ribs, really deep. What Dr. Hess really wanted to do, he said, was open up Alex's chest to see if there were more of these tracts, which he believes there are. His fear is that there are a bunch of these tracts running up and down Alex's chest along the long scar that is clear back from his very first surgery, done the day after Alex was born, and which runs pretty much the whole way down his chest & abdomen. Now, because there are 2 areas that have been opened up, there is a greater risk of Alex developing more infection. Dr. Hess said that they'll keep an extra close eye on this, and if this area that keeps getting infected gets infected again, his plan is to put a team of surgeons together and get Alex in the O.R. to open his chest up to try and get rid of all of these tracts and to remove any tumors they might find while in there, if there are any. So now, due to the more involved procedure this morning, Alex will be in hospital longer than expected. It sounds like he'll be in here until at least Tues. Alex will also be on pain meds now, as those areas are going to be sore. Plus, in the area of the infection that they cleaned out, Dr. Hess packed some dressing gauze. This dressing will need to be changed, which entails pulling it OUT of Alex, which can be really painful. So now we're scrambling to figure out what to do with Max. Jorge has been home with him so far, but can't really miss more work, and I can't really leave Alex alone at the hospital. I suppose I could, but I definitely won't. And Max has a cold right now, so he & Jorge haven't even been able to visit, as they'd have to wear masks & there's no way Max would leave a mask on. There are some kids on Alex's unit that are awaiting transplants, so they can't risk any additional infections coming in from the outside. Jorge is going to check with his parents to see if they can watch Max for a little bit tomorrow so that he can come visit. They are unable to watch Alex during the week, as his Dad works, and his Mom has a bum shoulder & is unable to lift anything, so that rules out her watching a very active little boy!
So that's where we're at now. I will definitely keep you all posted as to what continues to happen. Please keep checking in, and if you didn't get a chance to read the update from yesterday, just click on "read journal history". Please don't forget to sign his guest book!!Again, Alex is at the U of M Children's Hospital in Minneapolis, Unit 5A, Room 201. His room tel. # is 612-273-0300. Visitors are welcome!
:)
Love,
Amy

Thursday, January 10, 2008 9:20 PM CST

Wow. To say that today has been a frustrating day would possibly be the greatest understatement of both 2007 and the 10 days we've had thus far in 2008. As you may know, yesterday Alex was admitted into the hospital at the U of MN. If you don't know this, please click on "read journal history" for the brief update that I did yesterday to find out why he's in hospital again. So, I guess it started last night. They were running behind at the ENT clinic, which therefore meant that Alex got admitted into the hospital late. They didn't get him into have his CT scan until 8 pm, which meant he couldn't eat until they were done with that. By 10:30 we could finally go to bed. After a fairly rough night of sleep, the first doctor, a resident (from here-on-after referred to as Resident Ryan or RR for short) who doesn't know Alex from a hole in the wall, showed up at 6:30am. A little later 2 docs showed up, Dr. Kaysie (she's very sweet) and Dr. Hess, who is the only "real" doc of the bunch, as the others are residents. Dr. Hess is from pediatric surgery. Luckily Alex had already eaten breakfast because I was then informed that Alex wouldn't be able to eat or drink anything else until late afternoon, after "the procedure" had been done. The "procedure" was supposed to be sedating Alex so that Dr. Hess could make some incisions in the area of infection to really clean it out & investigate where the infection is coming from, and to get rid of all of the granulation tissue that had accumulated in the area. It was Dr. Hess' suspicion that the granulation tissue was causing increased inflammation in the area & possibly then causing the flare-ups in the infection site. The procedure was to be done at 2pm. They took us to the sedation unit at 2pm, where we were told that Dr. Hess was stuck in surgery and wouldn't be able to make it until 3pm at the very earliest. And we were told that they do not do any procedures in the sedation unit after 3:15. Dr. Hess had still not shown up by 3:10, so they called Dr. Acton, another peds. surgeon, in to do the procedure instead. Unbeknowst to me, Dr. Acton had not talked to Dr. Hess at all, therefore no communication had happened between the 2 of them.
---------------------------------------
OK, it's now Friday. The computer I was using last night needed to reboot, so I had to stop typing. That's probably a good thing, because I was pretty frustrated & worked up! Bottom line, Dr. Acton did not do as thorough of a job as Dr. Hess had said he was going to do, only inserting a little needle into one of the flare-up spots & extracting a little bit of strange, clear fluid. I was frustrated that Alex had had to go the whole day without eating for that. Then last night they set Alex up to do a Sleep Study on him, to see how his breathing, heart rate & etc. are while he's sleeping. But then the guy that set him up completely set him up wrong, so these SUPER DOOPER loud alarms constantly went off. So then we had to call the on-call person from the service that does these studies to come back & fix the problem. By the time she arrived, it was already 10pm. She got him hooked up correctly, or so we thought. But by that time, Alex was so over-tired that he was wound up like a spring & acting like the biggest goofball in the world, so he didn't go to sleep until around 11:30. THEN, as if he hadn't been through enough, the sleep study people had the parameters for Alex's heart rate set too high, at 80, and when Alex sleeps, his heart rate goes down to 60-70. This then caused the alarms to go off CONSTANTLY, and I mean CONSTANTLY, until 4am. Unbelievably, Alex slept through the entire thing & had a very nice sleep! I, on the other hand, did NOT sleep through the entire thing & was instead kept up until 4am, when I finally heaved my tired self out of bed & went in search of something sweet to eat. It ended up being graham crackers & an orange, so though not quite the Lorna Doones I was looking for, a tasty treat nonetheless. Alex's nurse was on the phone with the sleep study people right then to find out how to change the parameters on the machine, and once that was done, the alarm did not go off again in the night!
So today we woke up around 7:30 when Dr. Hess, Banton & RR arrived. The plan was to draw blood to check his white cell count for infection as well as his CRP, which is some type of protein, but also a test to look for infection. They drew that before breakfast. The other plan was to do a bone scan in the nuclear medicine dept. They came & got him this morning at 10:30 to start that. It sounded much scarier than it ended up being. They just injected some type of contrast medicine into his IV & then took some pictures. What they are looking for is infection in his bones, namely his scapula & ribs. They're concerned the infection may have gotten into his bones, which is of extra concern because of the VEPTR rods that are there. They will take more pictures of the bones this afternoon around 2pm. If there is infection in his bones, he will need surgery to remove the portion of bone that is infected. Though he wouldn't be on any restrictions activity-wise, the recovery time for that would be about 3 weeks. They also want to install a "permanent" line-access into Alex's arm so that he can receive IV meds from home for what sounds like at least 2 months. With a line, there is an additional risk of infection, but something we hope won't happen. So basically, right now it's a waiting game. We have to wait for all of the tests to be done, and for the test results to come back. It doesn't sound like Alex will be coming out of the hospital tomorrow, and I'm not sure when he will exactly, but keep checking in on this site, as I will update it as I know more. As I've said before, Alex loves visitors, or cards or whatever. All of his info regarding his room #, the tel # in the room, etc. are on this page in the "Hospital Info" section. In between all of the "stuff", Alex has also been doing a lot of fun things with the Child Life people, like dino sand art, playing with clay, playing bingo. Today the hospital even took all of the parents from the Unit out to lunch at Noodles & Co! It was nice to get a breath of fresh air & some food other than hospital food!! And better yet, free! His babysitter, Katie, is on her way with her Mom for a visit, so I'd better try & clean his room up a bit! Here also is his room info: He's at the U of MN Children's Hospital, Fairview, Unit 5A, room 201; the room tel. # is 612-273-0300. If you'd like to call, please do not call before 8am or after 7pm (as if I'm ever going to get Alex to bed on time in the hospital!!). If you'd like to visit, he'd love that, and there aren't really set visiting times. Just an FYI, latex is not allowed, so if you wanted to visit, please don't bring any latex balloons. Either way, please sign Alex's guest book, as he LOVES to read the entries! And please check back on this site at least daily, as I will try to keep it updated at least once a day while we're here in the hospital. Thank you for your thoughts & prayers!
Love,
Alex, Amy, Jorge & Max

Wednesday, January 9, 2008 3:02 PM CST

The infection in Alex's left chest is back as of yesterday, for the 4th time. He has an appointment today at 4:15 with his ENT (ear, nose, throat) doc at the U of MN, Dr. Rimmel, to address his huge tonsils & adnoids. Afterwards, we will walk over to the hospital at the U of MN, where Alex will be admitted for further studies on his chest. They, meaning the pediatric surgeons who have been seeing Alex for this ongoing problem since it started in Oct. '07, want to do some serious investigating to find out where exactly the source is of this infection & why it keeps coming back. They will also put him on IV antibiotics. They are unsure how long he will be in hospital, but are very doubtful he will be going home tomorrow. Please keep Alex in your prayers, and pray that the doctors can finally figure this out & get rid of this thing once & for all.
Thank You,
Amy

Friday, January 4, 2008 7:45 AM CST

Good Morning Everyone!
Well, as you've probably guessed, Alex is home! He's home and doing great. You'd never begin to guess that he's just had surgery a little over a week ago! Alex came home last Thursday, the day after his surgery. He's been going non-stop since then! We are so lucky & blessed that he does so well in having so many surgeries. He never complains, and just bounces back like nothing! Since coming home we've been busy just living our every day lives. Alex starts back to school this Monday, Jan. 7 and he's really looking forward to it! We hope you all had a wonderful, safe New Year's! We were all in bed at normal time. Jorge & I no longer watch the ball drop on TV. We're just too old! And tired! :) New Year's Day we went over to Jorge's parents' for their annual seafood lunch. Every year on Jan. 1 they have the family over & we all have lobster, shrimp & scallops for lunch (with veggies & stuff too). It's incredible! Alex LOVES it! He totally chowed on the lobster & scallops. By the time he got to the shrimp, he was too full to eat them! :) Max loved the lobster too. As did Jorge & I! Alex has been busy playing his Star Wars game on his DS. He loves it, and it's such a great thing for Jorge & Alex to do together--they totally bond over it! Boys and their toys, huh? :) On Wed. of this week, we met up with Alex's classmate Madeline, her Mom & brother Tyler at the MN Children's Museum. This was Max's 1st time there, and he LOVED it!! He loved being out of the stroller & getting to run all around & the fact that he actually got to TOUCH everything! :) Alex, Madeline & Tyler, who's 4, had a blast too. The Children's Museum is such a cool place! Today, actually, Madeline & her "gang" are coming to our house for a playdate & then we're going to go to Mama Maria's for their super yummy pizza buffet! So, things are pretty much back to normal. Alex has a little cold--we were afraid he'd get the nasty one Max had--but nothing major. Hopefully it will stay that way! Max is feeling a lot better. He still has a real "booger-y" nose, but he's back to his usual cheerful, goofy self otherwise. Alex has a Bday party to go to on Sunday for one of his classmates, so he's really looking forward to that too! Plus, it's at Chuck E. Cheese, which is always loads of fun for the kids. Max will be staying home with Daddy though. It would be too tough for me to hang with Alex if I had to worry about what Max was getting into there. It's fun there, but always a little crazy too! We wanted to thank all of you for all of your kind words, your thoughts, support & prayers during this last surgery! It means so much to us to know we've got such a great support system! Please keep checking this web page. I'll try & get new pics up soon, as well as a journal entry! P.S. My Mom is having surgery on her right knee this coming Monday, so if you could, please send out good thoughts and prayers for her! Thank You!!!
love,
Amy, Alex, Jorge & Max

Thursday, December 27, 2007 12:44 AM CST

Good Afternoon!
Well, Alex had a good night last night. So did I, at least as good as one CAN have on those uncomfortable chair-beds! Alex felt great all afternoon yesterday, though they have been keeping him on Tylenol w/Codeine every 4 hours to keep the pain at bay. His friends Maitland & Mariah came for a nice long visit yesterday afternoon w/their Mom & Alex LOVED that. We all went on a REALLY long walk together around the hospital & clinic areas. Alex is doing great w/walking! You'd never guess that he's just had surgery!! :) His Grandpa Molina stopped by yesterday afternoon as well to visit & brought Alex a candy cane & candy. And Alex got to talk to his Grammy Beavers as well. Just about every night here at Gillette's they have special activities for the kids to do, and last night was no different. Last night was a birthday party! When a patient at Gillette's is in hospital for their birthday, Gillette's has a party & invites all of the other kids to it. They had a craft for the kids to do, as well as an ice cream cake from DQ! YUMMY!! The craft were these little wooden boxes that open up that the kids could paint & decorate. Alex did 3 of them! He had fish sticks, broccoli, french fries, mac-n-cheese and apple sauce for dinner & ate it all! Plus the DQ cake for dessert! Not too shabby!! After the bday party we went back to his room & finished watching Ratatouille, then we went down to one of the computers & read all of the nice new entries on his guestbook page! THANK YOU to all of you for your nice entries!!! He LOVES to hear from his friends! Today has been a busy day too. Alex went with me down to the cafeteria to get my breakfast. We stopped by the gift shop first of course! Now Alex has another kitty to add to his stuffed animal collection! This one is a super soft & fuzzy black and white kitty named Cricket. :) Then we headed back upstairs to his room to eat our breakfasts. Alex had pancakes, Fruit Loops & bacon! After breakfast, a really nice Therapy Dog named Trooper stopped by for a visit! Trooper is a Golden Retriever & very very nice. We've actually met him before after another one of Alex's surgeries! I got some nice pics of the 2 of them together. If I can find a USB port, I'll upload the pics onto this site! After Trooper left, Alex & I played Zooreka, a new game that he got for Christmas. It's from Cranium, who make some of the best games, and Alex won! It's a race to see who can build their dream zoo first. Then Alex had a nice lunch of a hot dog, fries, corn, pudding & a chocolate chip cookie! I'll be going down to the cafeteria soon to get myself some lunch. Alex gets to go home today I believe! It won't be until later today, as Max is napping right now & we have to wait until he's up so that Jorge can come pick us up. Jorge said this morning that Max is feeling a little better, with less fever, though still no interest in solid food. He did have a bottle & a half when he got up, so that's good! And he went to bed last night at 6pm & didn't get up today until a little after 7! I'm waiting to hear from the docs if it's ok for Alex to go home to the sickness! But I think it will be. Keep checking back to this site for more updates & don't forget to sign the guestbook! Again, Alex loves that & he loves visitors too! Click on "read past journal entries" for info on how to get ahold of me to set up a visit if you'd like to visit! :) Hope you're all doing well & ready for a New Year!!

Blessings for the New Year,
Amy, Alex, Jorge & Max

Wednesday, December 26, 2007 1:31 PM CST

Hello!
Well, Alex is out of surgery #24 and doing great so far! Everything went really well with the surgery. Both of the hooks were still in place & attached securely to his ribs, so lengthening the rods was the only thing that needed to be done. Dr. Perra lengthened the lower rod 1.5cm and the upper rod 1 cm. Dr. Perra believes we'll be able to get one more lengthening in of these rods, and then he'll have to replace them with new, bigger rods. Since Alex has these rods lengthened every 6 months, that would bring us to needing them replaced in a year. Alex hasn't needed any additional pain medicine yet, as the local anesthetic is still working. But I imagine he'll be needing some pain meds in about an hour. Right now he's complaining that he's REALLY hungry, so we're starting him out on some ice chips, and if those stay down & don't make him nauseous, we'll graduate up to a popsicle! Boy, that's the life in a hospital, huh? A "Craftmatic" Adjustable Bed, cable TV, and a little button (the beloved nurse button) that he can push & a nurse will magically appear to fluff his pillow or bring him as many popsicles as his little heart desires! Jorge is in the room with him right now, as there are no computers in the rooms. Alex got a Nintendo DS Lite video game for Christmas yesterday, along with some games, so Jorge is helping Alex learn how to play the Star Wars Lego game. Jorge will need to leave pretty soon to get little brother Max (17 mos. now!) from his parents' house. Max is really sick right now w/a nasty cold or something, so we need to get him home to rest & recouperate. Christmas Eve found Max w/a temp of 104.2 and yesterday he woke w/a temp of 103.8. Today he seemed to feel a LITTLE better, but he still doesn't want to eat anything. Only drink. So anyway, Alex won't be getting a visit from his little brother while he's in hospital! :( Jorge has the rest of the week off to watch Max. Alex will be going home either tomorrow or Fri. We'll just have to see how he's doing pain-wise. If he's still doing as good as he is right now, he'll probably go home tomorrow. I refuse to let them send him home though if I don't feel he's ready! We have to speak up for our kids!!! Well, Max may not be able to visit, but I just got a call a little bit ago from my friend Michelle, and she & her girls, Maitland & Mariah, are coming around 3pm today to visit, which Alex is excited about! Maitland is in Kindergarten at Immaculate Heart of Mary Catholic School & I believe her sis Mariah is in 1st grade. Maybe 2nd. Anyway, Alex LOVES LOVES LOVES visitors!!! So if you would like to visit, please don't hesitate to call & find out a good time! My cell is 612-749-4798. Alex is at Gillette Children's Hospital in St. Paul, which is on the 4th floor of Regions Hospital. His room is in the West unit, room 458, Bed 1. The direct tel.# 651-602-6890. If you call the room, please do not call before 9am or after 7pm. Same with my cell I guess. And if you'd like to visit him but are unable to visit in the hospital, we welcome home visits too! :) Our home # is 952-935-3166, or you could call my cell. Our address is 3534 Shady Oak Road, Minnetonka, MN 55305. Anyhoo, I'd better get back to the room. There was another Mom in the room here w/me & we were chit-chatting while I've been typing, so it's taken me longer, and I'm sure Jorge is wondering where on earth I've disappeared to, though after 12 years together, you'd think he'd realize by now that if I have a chance to chit-chat w/someone (especially another adult!!), I'm going to do it!! :) Thank you for all of your thoughts & prayers! Please keep them coming for a speedy & pain-free recovery!! We hope you all had a great Christmas/Holiday Season as well!
God Bless,
Amy, Jorge, Alex & Max

Friday, December 21, 2007 2:02 PM CST

MERRY CHRISTMAS AND HAPPY HOLIDAYS EVERYONE!

This is going to be brief, as I don't even have my Christmas cards done yet, let alone have time to do a full update! :) But I wanted to let everyone know that Alex will be having surgery #24 on Dec. 26 at Gillette Children's Hospital in St. Paul. This will be the next lengthening of his VEPTR (Vertical Expandable Prosthetic Titanium Rib) Rods for his scoliosis. Dr. Joseph Perra will be performing the surgery again. Alex LOVES to hear from family & friends via the guestbook on this website, so please be sure to sign in EACH TIME you visit his page! Hopefully everything will go as smoothly as it did in the last lengthening & that he'll only be in the hospital 2-3 days. He doesn't start back to school (He LOVES Kindergarten at Immaculate Heart of Mary Catholic School, by the way!!!) until Jan. 7, so if things run smoothly, he should be up & running in time to start with his classmates! This year has just flown by, and I can't believe it's Christmas time again. We hope this has been a good year for you all, and that 2008 will be even better! Thanks for all of the good thoughts & prayers for Alex on Dec. 26!
Blessings to you all!
The Molina's
Jorge, Amy, Alex (6) & Max (17 mos.)

Monday, July 16, 2007 9:59 AM CDT

Hello Everyone!
Alex is doing great!! His recovery has just been awesome this time around. No pain medicine needed at all anymore, save for the occasional need for Tylenol at night if he's had a really active day, like yesterday. Yesterday was Max's 1st Birthday!!! Can you believe it?!?!?!! We didn't do anything exciting really. I felt kind of bad! With Alex, we pulled out all the stops for his first Bday! We just went to Applebee's for lunch, where Max got to have his first official "kid's menu" order! He had a grilled cheese sandwich & loved it! Plus ice cream at the end! He got scared to death & cried though when all of the staff clapped & sang their birthday song to him, poor little guy! Then we came back "home" & opened his presents, and of course he loved that! Then Alex had a birthday party to go to from 4-6pm for his triplet friends, Noah, Bryn & Lauren. I took him to that, but first we went to Build-A-Bear Workshop, where Alex made a teddy bear for Max & recorded a special message to him, so when Max pushes the left paw, he hears Alex wishing him a happy 1st birthday! After the party I took Alex by our house so he could see the progress the builders are making! They've got the drywall up now, and will be taping & mudding it all of this week. Jorge & I need to finalize our paint colors so that they can get that & do that after they've finished the drywall. It's coming along! We're still quite a ways out from it being finished, but it's coming! We'll just be ordering our cabinets on Wed. of this week, and it takes 4 weeks to get those, so that's kind of a bummer. That will hold us up a bit, but what can you do, you know? I'm just happy it's finally getting finished!! This Friday the boys & I are driving down to my parent's in Shenandoah, IA to visit for a week. Jorge's parents are coming home 7/24, so since our house isn't near finished yet, I thought it would be a nice time to take the kids to see Grammy & PopPop. We'll just be staying until 7/29 (my birthday) though, as Alex has a science class he's starting on 7/30. Then he starts swimming lessons the week after that. I wish we could stay longer, but because of those things, we can't. Who knows, maybe we'll go back down after the swimming lessons are done, as I'm sure the house won't be done yet! Jorge, of course, will be staying up here to work! It will be really nice to see my Mom & Dad. They haven't seen the kids since May, which I guess isn't that long, but when there's a baby involved, they change so quickly! Alex is really excited to see them again, and Max will be too once he sees them! It's nice too, because we'll be there for my Dad's birthday (7/24). And my brother Brian, his wife Christy and their girls Brielle & Avery are going to come up to Shenandoah from Kansas City on 7/27 so we can all get together. We'll have a little celebration then for Max's birthday! I'll either make or order a cake. Probably just make one. Max isn't going to care one way or another! :) Plus my birthday is 7/29, so it will be a week of Bday celebrations! I'm hoping to see my friend Gina & her kids. I haven't met her little baby Chloe yet, so I'm excited to see her! And her big brother Noah. And I'm planning on getting together w/my friend Wendy, once for an "adults only" lunch :) and once w/the kids. She has 3 girls, so I'm sure Alex will be completely overwhelmed! :) He likes the ladies though! Hopefully I'll get to see my friend Tony too, and Jeff & Lori! It's a lot to pack in to a small amount of time! We're excited to see everyone!! Like I mentioned earlier, Jorge's parents come back on 7/24, so some time after we come back up here, we'll have a Bday celebration for Max w/Jorge's family.
We've been keeping busy up here. Alex has had a couple of playdates up here. His friend Maitland came w/her sister Mariah & mom. And his friend Morgan came w/her brother Mitchell & their Mom. Alex really loved having them here!!! The kids have really loved having all of this extra space to run around in! The weather was really nice this last week, not too hot. Alex & I took a class at the zoo on 7/7 about tigers. Part of it was outside and it was HOT HOT HOT!!!! It is supposed to be getting hotter again all this week, with the weekend being 95 the whole time w/lots of humidity. Hopefully it won't be as bad in Iowa, but I doubt it. Thank goodness for air conditioning!!
Well, hope you are all staying cool in this hot summer heat! We love hearing from you, so please keep on emailing and MAKE SURE you always sign the guestbook! That's Alex's favorite part--reading all of your nice guestbook entries!! Take care!
Love,
Amy, Jorge, Alex & Max

Friday, June 29, 2007 10:39 AM CDT

Well, we're "home"! We're staying at Jorge's parents house for the next month while the builders finish our addition, so New Brighton, MN is our temporary home for now! It's really quite nice. Jorge's parents are in Europe until July 25, so we've got the whole place to ourselves! It's nice to have so much space!! But we also can't wait to get back to our new & IMPROVED home! For now, we can be reached at 651-631-8988. If anyone would like to visit Alex "up north" here, he would absolutely LOVE it!! Just give us a call!
So, Alex is doing GREAT GREAT GREAT!!! He's out in the living room right now playing up a storm. He's been really active since we brought him home! He definitely still has pain, and he's taking Tylenol w/Codeine around every 4-6 hours, but he still gets around really well. No walker needed this time! YAYYYYY!! Alex was really excited about that!! He is complaining some about pain in his left hip, and it makes it difficult for him to walk sometimes. I'm not sure what's up with that, as I don't think that would be related in any way to the surgery on Monday, so I think I'll call Dr. Walker, his leg/foot/hip ortho surgeon & let him know what's going on & see what he thinks. Alex sure was happy to get out of the hospital, though he did initially ask the nurse if he could stay longer! I think he really likes those beds & the fact that he can push buttons & make it move! Plus, if I've run to get something to eat or something from the cafeteria, he can push the nurse button & someone will come fluff his pillow & hang with him! :) He's been in the hospital so many times, he's like "Norm" in "CHEERS"--everybody knows his name!! He knows all the in's & out's of the hospital & knows how to work them to his advantage! :) But once we got "home", he realized how much more comfortable it is here. Plus, in the hospital he really wasn't moving around much & was really reluctant to walk anywhere, preferring the wheelchair, but once we got to the house, he was off & walking and even sometimes running! He truly is an amazing kid. He's been through so much, but he's such a good-natured, positive little guy, you'd never guess he's just had his 21st surgery! He takes it all in stride. I try to remember that all the time when I'm getting annoyed by petty things such as traffic. His positive outlook on life helps me to keep a better perspective on what's really important in life. Max sure was happy to have his big brother back! He was super excited when he saw us come through the door! He loves his big brother very, very much. And Alex reciprocates that feeling!

The construction is coming along on our house. They were going to have the electricals inspected today, and on Monday they were going to finish the last bit of framing & start in with the insulation. They hope to have all of the drywall up & finished by the week of the 9th. Then they will start installing the hardwood floors. Jorge & I have been looking at paint colors, lighting & bedroom sets. We meet next week with the carpet guy, as our bedroom will have carpeting. The rest of the addition will have oak flooring stained to match our existing oak floors. We've got our kitchen layout all finished, but the cabinet people can't come in & measure until the drywall is up. It takes 4 weeks for the cabinets to come in, so that will hopefully be our only hold-up. Alex is excited about having our house finished finally. So are we!!! This addition started 2 1/2 years ago!! Max has been sleeping in a Pack-n-Play in the living room since he was born, so I'm super excited that he's finally going to have his own room! And that Jorge & I are too! Plus, we'll finally have a bedroom that matches & doesn't look like some kid straight out of college lives in it! I'm also very excited about having a new kitchen!! We haven't had a kitchen in over 1 yr. I love to cook & bake, as does Jorge, so we've been missing that tremendously!! Our new kitchen will also be quite a bit bigger than our old one, plus will have an island, so that will be really nice! It's so nice to have someone else taking care of all of this construction stuff finally, instead of Jorge having that weight on his shoulders of trying to finish such a big project in addition to his own full-time job!
It's a beautiful day here in New Brighton, so I think after lunch I'll take the boys on a walk. There is a park not too far from the house, so I think we'll explore that way. I don't know how much playing Alex could actually do on the equipment, but the walk will at least be really nice. It's not too hot here today, so we shouldn't get too sweaty!

Thank you to all of you who have checked in & for all of your thoughts & prayers. Alex has a follow-up with Dr. Perra in 6 weeks, then again at 4 mos. At the 4 mos. appointment we'll discuss Alex's next surgery & schedule it soon after. It will probably be around Thanksgiving time, or soon thereafter. Can you believe it? But in the meantime, we're going to have as much fun as we can! Alex will be starting Kindergarten at Immaculate Heart of Mary Catholic School this fall, so he's really excited about that! Thank you again. Please keep in touch & keep signing that guestbook! Alex loves to hear from you all!!!!!

Love,
Amy, Alex, Jorge & Max

Monday, June 25, 2007 11:55 AM CDT

Hi Everyone.
Alex is out of surgery & doing great! The surgery went really well, and the VEPTR's needed no revisions, just the expansion. Dr. Perra thinks he will actually go home tomorrow! When I went to see Alex in recovery, he was by far the most alert & calm I think I've seen him after surgery. There were no tears or anything! He is in Room 457, Bed B at Gillette Children's Hospital in St. Paul. Dr. Perra expects that he'll be up & walking today. He has already been sitting up on his own, so I wouldn't be surprised one bit. They did give him some morphine in the recovery room, so he's pretty groggy, and napping right now. That's why I'm on the computer. Jorge is at his parent's house w/Max, who is napping right now. They will be coming here after Max wakes up & eats. We will be staying at my in-laws for about the next month while our house finally addition finally gets finished. Alex is very excited that the next time he goes home our house will look completely different! So am I---it's been 2 1/2 years coming! Well, I wanted to let everyone know that our little Hercules is doing great & that hopefully he'll be "home" tomorrow! We will be able to be reached at my in-laws after Tues. & their # is 651-631-8988. Otherwise you can reach me on my cell at 612-749-4798. Thank you to you all for all of your thoughts & prayers!!
Love,
Amy

Wednesday, June 20, 2007 9:28 AM CDT

Here we are again! Time for an update! We hope that this spring/summer is going well for you all! We've been having a nice time since the last update!
April brought lots of playdates for Alex w/his school buddies, especially during spring break! We stayed around here during break, so it was nice for him to get out & play! April also brought a few Easter Egg hunts. Max didn't take part in those. We figured he'd just destroy the eggs! On April 11, Alex had a follow-up w/his spine ortho surgeon, Dr. Perra, to see how everything looked. Luckily, everything still seemed to be in place! None of the hooks had become dislodged from Alex's ribs, which is a VERY good thing! We also discussed Alex's next surgery, which is coming up this Monday, June 25 at 8:30am. I'll talk more of that in a minute. Let's see, what else...OH! On April 20, Alex & I went to a MOMS Club Pizza & Pool Party, and for the VERY FIRST TIME EVER, Alex actually let go of me in the pool. He had his floaties on & when he finally let go, he was SO excited that he could just float & swim on his own! Alex has ALWAYS been EXTREMELY hesitant in water, and this was a HUGE step for him. Unfortunately, we haven't been swimming since, so I'm not sure how it will go the next time. He is going to be taking swimming lessons at the beginning of August, so hopefully that will help. Every year we've put him in swimming lessons, but since we've only done one session a year, he never has progressed or gotten comfortable in the water. This year our goal is to have him do session after session after session...so that he can really learn. I tried to get him into swimming earlier this summer, but all of the "adapted" swim lessons were full except for the August one. The adapted one just means basically one-on-one attention. It's for kids w/any type of special need, be it cognitive or physical. It's a better fit for Alex, as he hates to even be splashed, so swim classes w/larger class sizes just aren't a good fit for him. Hopefully he'll enjoy himself! Max is the polar opposite of Alex when it comes to water! He adores being in the water, being splashed, having water dumped over his head, etc. I don't know if Alex's aversion stems from early on, when he was in casts that first year, so he didn't get exposed to water, or if it's just part of his nature. I just really hope that this will be the year that Alex finally becomes comfortable w/swimming! On May 5, Alex, Max & I did the Animal Humane Society's annual Walk for Animals. We had a great time & for once, the weather wasn't too bad, though it did start to rain as we were leaving. Usually it's really chilly & raining too, but this year wasn't too bad. Max loved seeing all of the doggies walking all around him!
My parents came up to visit for a couple of weeks on May 8, which was SO NICE!!! The kids REALLY loved getting to spend so much time w/Grammy & PopPop, and it was great for my parents too, albeit exhausting!!
Alex's class had a field trip on May 18 to the Como Zoo in St. Paul, which Alex had a blast at! Max stayed home with my parents, as it was an all-day field trip. We had beautiful weather for the kids to walk around & look at the animal in, and in the afternoon, the kids took a class called "Fur, Feathers, Scales & Slime" which they all really enjoyed.
Alex's last day of school was May 30, and the kids had an ice cream social the last part of the day that the parents could come too. Alex had such a great time at school this year, truly blossoming at IHMCS (Immaculate Heart of Mary Catholic School). His confidence level & his ability & comfort to play w/his peers just SOARED! He came out of school a different little boy than when he came in there in September! Alex is REALLY excited about starting Kindergarten there this fall. The majority of the kids from his class are also continuing their schooling at IHM, so he should have some of his buddies in his class this fall! There are 2 Kindergarten classes there, and we don't find out until the week before school starts which class he'll be in & with whom, but we're pretty sure he'll be in Miss Donnay's class. His teacher this year was going to recommend Alex for her class, as Miss Donnay is a major task-master & Alex needs someone like that to keep him on task!
We've got some fun things planned for Alex this summer! We've already done a couple of things. On June 2 a toy store called Creative Kidstuff here had a special event called "I Dig Dinos" that Alex & I did. It was a big block of VERY hard sand & the kids got a hammer & chisel (sp?) and got to whack away at it to find hidden dinos, dino bones, etc. in the sand. It took FOREVER, but Alex finally found the spine of a stegosaurus! We did this same even last year & we remembered that the safety goggles they provided always fell off, so this year Alex brought his own! Then on 6/10 Alex & I did a class together at the MN Zoo called "Shark Alert". It was a "behind-the-scenes" look at the big shark tank at the MN Zoo. It started in the classroom w/lots of shark facts, then we got to go meet with one of the aquarists & he took us in the back & showed us the kitchen where they prepare the food for the sharks, as well as the actual food. Then he took us upstairs where we were actually on top of the shark tank, looking down. The tank actually was OPEN in a large part, and the kids got to lay down on their tummies & look in! Quite a few of them did that until one of the big stingrays jumped out of the water right in front of them & splashed them!! It was VERY cool! The class ended w/the kids having snack & getting to make a couple of different shark crafts, including a shark-tooth necklace! It was an incredibly cool class & we can't wait to do another one! We are signed up to do one called "Tiger Tales" on July 7, so hopefully Alex will feel well enough by then after his surgery to do it. It's all about different types of cats, which ones purr, which ones roar, etc. And we get to go behind-the-scenes again & learn what they feed the tigers & to the holding tanks they keep them in at night. It should be another really interesting class! Poor Max doesn't get to do these fun things yet. He stays home with Daddy & has fun with him instead!
Speaking of Max, can you believe he's nearly 1-yr. old?? He'll be 1 on 7/15!! I can't believe how time flies by so quickly!! He's already taking some steps on his own & getting into all kinds of trouble! He has learned how to climb up onto Alex's picnic table, which we definitely need to nip in the bud! He's a very happy little baby & very funny too. Alex is an AWESOME big brother & Max thinks he's just the bee's knees. And hilarious. Max laughs at his big brother's antics all the time. Alex loves him very very much. They are both very lucky to have one another & Jorge & I are very lucky to have the both of them!
At the end of July, Alex is taking a science class called "Amazing Me", which is all about the body. I think he'll really enjoy it! It's from 12:30-2:30 Mon. 6/30-Thurs. 7/2. Then, like I mentioned earlier, he'll start swim lessons that next week. I would like to get him into a sports camp too, but I need to wait & see how he does after his surgery. The camp I want to get him into is called "Mini-Hawks Multi-Sport" & it has T-Ball, Soccer & Basketball. I've talked to other Moms that have enrolled their kids in this & they've had rave reviews about it! Well, aside from these things, we've also got a lot of playdates scheduled at different parks/beaches w/his school friends so that we can keep up w/them!
So, surgery is this Monday. The 6 mos. since the last surgery sure has flown by! This surgery will be his second expansion of his VEPTR rods. Hopefully this will go as well as it did last time & he'll have a speedy recovery! Last time it was the knee portion of the surgery that caused him all of the problems & the back portion was a breeze. Let's hope it's the same for his back this time! Hopefully when Dr. Perra gets in there, the hooks will all be in their correct places & it will just be expand the rods & be done with it! Please keep Alex in your prayers! I'm going to be putting new pics up on the photo page, so be sure to check that out too! We hope you're all doing well! Don't forget to sign the guestbook! Alex loves to hear from you!!! And remember to check this webpage after Alex's surgery, as I'll be updating it from the hospital.

Love,
Amy, Jorge, Alex & Max

Sunday, April 1, 2007 1:57 PM CDT

OK, OK. I know! I've been very delinquent in my journal updates. But come on! I've been sort of busy with 2 kids, ya know?? :)
Soooooo...where to begin....Well, I guess I'll try & go back to when I last updated this, if my memory can manage! Christmas was awesome! We were down in Iowa at my parents & we stayed, the boys & I at least, until Jan. 2 when we met Jorge in Ames to go back home. Alex loved seeing Grammy & PopPop, Uncle Brian, Aunt Christy & his cousins Brielle & Avery, and of course Christmas was EXTRA EXTRA special this year with little Max being there too! Everyone loved doting on the little guy!
Alex was back in school that next week. I have to say, Immaculate Heart of Mary Catholic School has truly been a blessing for Alex & us. He has blossomed SOOOO much there, and has made so many great friends! His confidence has improved ten-fold! And the majority of his classmates/friends are continuing on to kindergarten there as well like Alex is. He's going to have a blast next year! January also had Alex losing his first tooth, and Max getting his first tooth a week later! Max also started crawling in January! Alex's knee still isn't 100so that continues to be a frustration, but at least now he can walk, run & climb with the other kids and is completely done with the walker, at least until his next surgery. WE don't have a date yet for that, but it will most likely be in the beginning of June, after school is out. The sooner the better, so that Alex can actually enjoy his summer this year! And this next surgery will only be a lengthening of the VEPTR's, so as long as nothing goes wrong, it should be a fairly quick recovery. Keep your fingers crossed & pray for him! Of course, I'll keep you updated as the surgery gets closer. Alex also had another fieldtrip with his class, this time to the Children's Museum in St. Paul. What a blast!! By the way, sorry about my jumping around from jan. to present day, etc. That's just sort of how my brain is working today. I guess I should be thankful it's working at all!! HA! :) February was pretty run-of-the-mill. Lots of fun at school, Max pulled up to a table for the first time, and a huge snow storm at the end of the month! That brought us to Alex's first time sledding! His class had a sledding party a few days after the big snowfall! I wasn't sure how Alex would take to it, as he's not the most daring little guy in the world. And after breaking his leg 2 years ago on a slide, he's been very wary of any type of sliding activity. But he absolutely LOVED it!!!!! The class stayed out sledding for an hour & a half, and Alex loved every minute of it. We really couldn't have asked for a more beautiful day--the sun was shining bright & it was warm! I even stayed out the whole time with Max, and we Moms took turns watching him so that we could go sledding too! Boy, if you really want to feel like a kid again, GO SLEDDING!! I hadn't been sledding since I was a kid, and I had a blast, just like Alex! We were both really bummed that we never got another chance to go sledding again this winter. Part of the problem is we don't have a sled! And trying to find one in February?? Forget about it!!! Next year, I'm getting sleds the minute they hit the sales floor!!
And now, we're in March, nearly to April already! We're getting ready for the Easter Bunny around here! Last Sat. we all got to have breakfast with the Easter Bunny at Macy's, which was a thrill! Max couldn't stop smiling at him!! And yesterday Alex did an Easter Egg hunt in St. Louis Park, though due to the rain, it was held inside and it wasn't so much of a "hunt" as it was a "here's your basket full of eggs, kid", but he still enjoyed it! Hopefully the weather will be ok for actual Easter so we can do our usual egg hunt in our yard! Alex is on spring break right now until 4/9, so we'll be busy this week trying to find things to occupy our time! April 11th will bring Alex's appointment with Dr. Perra, his spine doc, so we'll have his next surgery date shortly after that. I'll keep you posted. May will bring the annual Animal Humane Society's Walk for Animals that we've done the last 5 years (6 for me). I'm going to be sending you all an email link to my page for them so that you can check it out & donate if you'd like! We look forward to this every year!!
OK, I need to run. There's cleaning to be done! Hope you're all well! Don't forget to check out the new pics on the photo page! And don't forget to sign the guestbook!!
Love ya all!
Amy

Thursday, March 29, 2007 3:44 PM CDT

Sorry everyone! I know it's been AGES & AGES since I've updated Alex's webpage! It's hard to get down into this "dungeon" of a basement now to the computer & 2 little ones!! But I hope to get a big update on here soon, maybe even this weekend! Miracles DO happen!!! (Just look at Alex!). I did put some new pics up though, so be sure to check those out! Max is 8 mos. now! Alex is doing GREAT! He has truly blossomed in school (kindergarten readiness at Immaculate Heart of Mary Catholic School). He reads big books now. I mean, BIG books. All on his own. Such a smart guy!! Anyway, gotta run pick him up from school. Please click on "Read Journal History" to catch up on Alex! Hope you're all well!!

Love,
Amy

Monday, November 27, 2006 10:38 PM CST

Hi All!
Hope you all had a wonderful Thanksgiving!!! Ours was lovely, and was spent w/Jorge's family at his parents' house in New Brighton, MN. Alex was discharged from the hospital on Wed. 11/22 and is doing well! He is still not walking, but aside from that is doing great. It's funny...here we thought that his back would be the biggest issue in his recovery, but instead it's his right knee. (OK, so it's not really "HA HA" funny...). He rarely complains of his back hurting, but the knee causes him problems. This is a CLASSIC example of the differences in the way a patient's surgeon thinks, and the way the patient's parents think. When I asked Dr. Dahl, the surgeon who worked on Alex's knee how soon Alex would be up & about, he said "Oh, he'll be up on it the same day!". "Well great!", I think, but our view of "up & about" is completely different than Dr. Dahl's. Our view is that he would be totally mobile & able to function on it. Dr. Dahl's seems to be that Alex would be able to put pressure on it. Needless to say, it's not the walk in the park we thought it would be. Alex gets around now by crawling, or by us carrying him. He's VERY reluctant to put ANY type of pressure on that right foot, as it causes him pain, therefore making him afraid to use the right leg at all. He will stand, but flamingo-style, keeping the right foot off the ground. Totally not what I was expecting, so I'm a bit baffled as to how to procede. I don't want to push it too much, as I don't want further injury to happen. But on the flip-side, I don't want to be too lax & just let him be "lazy" (not a term that really fits, but my brain is too tired at the moment to come up with a better one...sorry) & get away with crawling everywhere. He can't very well go back to school crawling now, can he? His first PT appointment with his beloved Physical Therapist Melissa is this Thursday, so we'll see what she comes up with. Alex is ALWAYS much more compliant with her requests than our own! All of you parents out there know how that goes..."Oh, your child was such an ANGEL for us...blah, blah blah" from other people, then the moment they're back into your own care, LET THE WHINING BEGIN!!!!! This isn't always true, and certainly is not always the way our angel children act, but COME ON---we've ALL been there at some point. ANYHOO, we'll do what we can until then & see how far we get. I don't honestly think there's much pain there anymore, but Alex has a HUGE mental block telling him that there will be if he puts the slightest amount of pressure there. I don't know. I'll be very interested to see what Melissa has to say. Alex's PCA (Personal Care Attendant) started today, and he loved him. There will actually be 2 of them. Johnny will be here T &
TH, and Paul will be here MWF. But Johnny is actually the one who stayed today & Alex really connected w/him. He'll be back tomorrow & said he will be bringing activities for Alex to do. He will also be working on "range of motion" exercises for Alex, though we're waiting on print-outs of some specific exercises from Melissa that I'll hopefully be able to pick up tomorrow morning, if she has them ready. Johnny has a degree in psychology from Augsburg College here in the Twin Cities. We'll see how Alex gets on with Paul on Wed. If he doesn't connect w/him the way he has w/Johnny, I think I'll see if Johnny can be M-F. Of course, once Alex starts back to school he most likely won't have a PCA 5 days a week. We'll just see how it goes. Yesterday we put up & decorated our Christmas tree, which Alex always loves to do. Max enjoyed watching! He was fascinated by the lights! I found a dinosaur ornament at Target yesterday too, so Alex was thrilled to put that on the tree!! Unfortunately, when he tried to stand to hang it front & center, he lost his balance & fell, bumping & therefore hurting his right knee, the poor little guy. So he didn't want to hang it last night, choosing instead to sleep with it. He gave it another try today & successfully hung (hanged?) it without falling. I of course got pictures! I'll try & get some new pics up on this site tomorrow. So when you read this, if there are still bug pics up, check back & there should be different pics soon. OK, I'm pooped. Hope you're all well. Please continue to check Alex's site, and DON'T FORGET TO SIGN THE GUESTBOOK!!! Alex LOVES having me read all of the entries to him! Take care! And thanks for all the thoughts & prayers!
Love,
Amy, Jorge, Alex & Max

Tuesday, November 21, 2006 2:50 PM CST

Good Afternoon Everyone!
Well, aside from waking up every 15-20 minutes to have me help him get comfortable, Alex had a really good night. Finally at about 3am he fell into a deeper sleep & didn't wake again until about 6:30. Between that & the nurses coming in all of the time to check on him or give him pain meds, it wasn't the most restful night for us, but a good one. His pain has been SO MUCH less this time around. I mean, altogether a completely different experience from when the VEPTR's were placed back in May.And that's a good thing!!! Alex ate really well last night, having a grilled cheese sandwich, chips, pudding & milk. This morning he had french toast & bacon. He didn't eat too much, but some at least. For lunch he had some bologna & cheese, again not eating too much. He got all of his cords disconnected today too, so it's nice to be wireless now! :) His IV is still in place, but not in use. He's only receiving oral pain meds now--Tylenol 3--and no longer any IV meds. I think the last IV pain med was at 6am. They'll remove that tomorrow before he gets discharged. Jorge's Mom couldn't watch Max anymore, so Jorge is home with him. They stopped by for about 15 min. at lunchtime, and then went home again. He'll be home w/Max again tomorrow. Alex is excited about a "craft" they're doing here tonight w/the Child Life Services. They'll be decorating turkey cookies! We were hoping that there would be a therapy dog in today as well, but no such luck. Tomorrow there is supposed to be one, supposedly in the morning, so hopefully it will be before Alex goes home. I'm not sure what time they're thinking for discharge. Most likely not until afternoon. I think it's going to be a golden retriever, but I can't remember the name. Alex is in his room right now playing with Play-Doh w/one of the volunteers, Taylor. He was really excited to do that! He wanted to bury dinosaurs & play extinction! And that gave me a chance to update his website quick! Alex had a PT appointment this morning & will have another one this afternoon at 3, which I guess is right now, as the PT lady just came & found me!! Alex has been doing a little walking on his own!! What a trooper!!! OK, gotta run to his PT. Keep signing the guestbook! Alex loves having me read the entries to him!
Love,
Amy

OK, I'm back from his PT. He didn't really do much walking this time. He was saying his leg was really hurting, so we're hoping to try again later today. Alex is with me now. I think he's really tired, which is understandable! If you're interested, Alex is in room 452-Bed 1, and his room telephone # is 651-312-3150. If you call, please do not call after 7:00pm, or before 8am. Alex loves visitors, so if you feel like it, he'd love it!
Thank you for your continued thoughts and prayers for a speedy recovery!
Love,
Amy, Alex, Jorge & Max

Monday, November 20, 2006 7:11 PM CST

Good Evening Everyone!
Well, everything went really well with Alex's surgeries. Dr. Wood went first, and he found that it indeed was NOT a nipple, but WAS a dermal sinus tract, like I had thought. This is sort of like a tube that goes into Alex's body. It was fairly large, wangling through the ribs & into his chest. But Dr. Wood got it all. He doesn't think it's anything more, but has sent it to pathology just to make sure. Dr. Dahl went second on the knee. Once he was "in there" he decided to only put one staple plate around one growth plate, the one for the right femur. He decided that was the only one that had abnormalities, and that the growth plate involving the tibia did not. So that was good news! Dr. Dahl also gave Alex 2 shots of Botox behind his right knee to try & help loosen up that contracture some more. Dr. Perra went last. Alex had xrays done on his back before any of the surgeries. Dr. Perra was worried, after looking at the films, that the lower hook on the longer VEPTR, that was attached to L3 (Lumbar 3) had come loose or "plowed through" Alex's bone, and therefore he may have to do a more invasive procedure in that lower area. Thankfully, that was NOT the case!! YAY!!! Dr. Perra took more xrays once Alex was anesthetized & came to the conclusion that it hadn't come loose. At least not for now. He said that we would definitely have to watch it closely. As far as recovery goes, Alex is doing WAY better than after the last procedure. His friend Maitland, from school,her Mom Michelle & sister Mariya came to visit Alex late this afternoon, and Alex was even being quite the little goofball for them!! He LOVED having all of that attention from all the pretty girls!!! :) Now(Jorge is in there with him) he's getting pretty groggy. I wouldn't be surprised if he's sleeping when I get back in there from finishing this. I will be sleeping here tonight w/him in his room. They have one of those oh-so-comfortable pull out chairs that I'll be snoozing in! Dr. Perra said today that he thinks Wednesday will be a much more realistic discharge day. YA THINK??!! But really, Alex is doing really well. He is on the 4th floor, unit 4W, room 452-1. I forgot to write down the direct phone # into his room, so I can't give that to you right now. You could call Gillette's Children's Hospital in St. Paul & ask for his room if you wanted to. He is in the directory. OK, I'd better get back to my little boy. We hear Max is doing great w/Grandma & Grandpa. We sure miss him!! Thanks to you all for your continued thoughts & prayers!!!! Keep checking back for more updates!
Love,
Amy, Jorge, ALEX & Max

Sunday, November 19, 2006 6:33 AM CST

Hi Everyone!
Well, we're on the (nearly) 24-hour clock now. Alex will be having his 20th surgery tomorrow at 8:45am. His check-in time will be 7am. He's doing really well with it. He's nervous, which is completely understandable, but mainly that nervousness is just about the pokes! He knows that prior to surgery, when it's time to insert the IV, that he can ask for them to put him asleep first. He gets to choose a flavor of Lip Smacker, which he then rubs all over the inside of the oxygen/gas mask (the gas they use to put him asleep is rather stinky) so then he goes to sleep with a really yummy smell! They also use aromatherapy w/lavender at the hospital. They put lavender oil on a special band-aid that they stick to his hospital jammies. It smells wonderful! They do that when he first gets to the hospital. I had one of those special band-aids last time too, in May! Last time, since I was pregnant, I didn't get to go into the operating room with him prior to surgery, due to risks that there might be remnants of gas in the air that might've been bad for the baby, so Jorge went in. But that was really hard for me! I'd always gone in on all the others so that I was there when they put him to sleep. This time you'd better believe I'll be in there! Max will be staying w/Jorge's parents. We'll be dropping him off today so that we don't have to run him there super early in the morning tomorrow. The surgery is going to be done at Gillette Children's Hospital in St. Paul. They expect the surgery to be 2.5 - 3 hours long, though his last surgery in May took considerably less time than they expected, so we can always hope for that! The difference this time though is that he's having 3 different procedures done. I said this is his 20th surgery, but if we were to count how many actual PROCEDURES he's had done, since we try to pool a few together if he needs them so that he doesn't have to go under anesthesia so often, I think that the number would probably double. Can you believe that?? You'd never guess it by his good nature! So the surgeons that will be working on him are Dr. Perra, Dr. Dahl & Dr. Wood. Dr. Perra's procedure is the main one. He will be doing the first expansion of Alex's 2 VEPTR rods. VEPTR stands for Verticle Expandable Prosthetic Titanium Rib. For those of you who may not know what these are, they are Titanium rods that are attached to Alex's ribs. They were initially put in in May of this year. They expanded his, or spread his ribs to allow his lungs & heart more room to function. Due to his scoliosis, his chest wall is deformed, therefore not allowing enough room for lungs & heart to function correctly. This is why scoliosis can possibly be fatal. And this is why we had these rods placed in Alex in May. His curve was getting really bad. Anyway, if you'd like more info on that, you can check out previous journal entries on this website & go back to April/May. You can also check out the website www.veptr.com . This is a website put together by parents whose children have had VEPTR's placed. Anyway, this will be the first expansion of the rods. Dr. Perra assures me that this will be a much less invasive procedure than the one to place the rods, and he expects only an overnight hospitalization, which seems very odd to me, as he expects Alex to need at least 2 weeks out of school. To me this says there will be quite a bit of pain, like last time. We'll just have to see. You'd better believe that if I feel Alex is in too much pain or not ready to go home from the hospital, I will not allow them to discharge him. When he had the VEPTR placed in May, Dr. Perra wanted to discharge Alex earlier & I said NO WAY! He hadn't even tried walking yet at the time!! We are Alex's biggest advocates, and we will not allow things to happen to him that we feel might be detrimental! One plus is that for the first time, I have a PCA (Personal Care Attendant)in place to help out w/Alex after his surgery. I don't know what it's going to be like after this expansion, but after the placement of the VEPTR in May, Alex couldn't even sit up on his own, let-alone walk. And to take him to the bathroom, you had to initially hold him above the toilet because it was too painful for him to sit on it. And due to the ribs being spread & the subsequent partial "straightening" of his spine that was a by-product of the rib-spreading, Alex had a whole new center of gravity & it was very difficult initially to walk, as his balance was completely off. So now I'm going to have help. It was hard enough to do when I was pregnant at the last one, but now I've got a 4 1/2 month-old to care for too. It was EXTREMELY difficult for me to finally relent & accept the help. In a way it makes me feel like I'm a bad Mommy, like I'm incapable of caring for him, but I know this isn't the case, and that sometimes we just have to ask for help. Jorge has taken Monday & Tuesday off, so the PCA wouldn't start until Wed. probably. The person (I don't know who it is yet) can be at our house M-F & probably from 10-4. This expansion stuff is new to us, so we'll kind of be playing it by ear to see how much pain there is, how dependant Alex will be on us, etc. to judge how many days/hours the PCA will be there. It's good to ask for help, I know. I just have to get past that mental block that tells me I'm failing if I do. There are also some DEAR DEAR friends that will be bringing us meals for a bit after the surgery, so we are SO GRATEFUL for that!!! THANK YOU ALL SO MUCH FOR YOUR OUTPOURING OF KINDNESS & HELP!!! So anyway, that's Dr. Perra's part. Dr. Dahl is the surgeon that put the Fixator on Alex's right leg back in the spring of 2003. What a great guy! Anyway, Alex's right knee is growing kind of funky. The inner part of his right knee is growing faster than the outer part, causing Alex's right leg to be sort of "knock-knee'd", which then causes the right leg to be "shorter". It's not really, but because the knee "knocks" in, Alex's right foot twists inwards, therefore not allowing him to stand level on it. If he does stand level on that right foot, his whole body tips to the right. It's hard to explain, but if you saw him, you'd understand. Hopefully I did a decent job explaining it. So Dr. Dahl is going to put 2 staples in Alex's right knee, one around each growth-plate on the inner portion of his right knee. This will temporarily stop the growth on that inner portion of the knee, thus allowing the outer portion of the knee to catch up in growth (hopefully!!), with the end result being no more knock-knee & a straight leg that he can actually stand on! Dr. Dahl normally would do this procedure as a same-day surgery, so he doesn't expect much in the way of recovery. Dr. Wood is a plastic surgeon that is going to address what we thought was an inverted left nipple. This "nipple" really bothers Alex, as it gets itchy because stuff gets caught in it. Sort of like the belly-button lint-trap that we all have. Alex doesn't have a belly button, so I guess God made up for it with this funky thing! But when Dr. Wood examined the "nipple" he didn't see any pigmentation that would denote nipple material, so it's going to be sort of an exploratory surgery to find out what's under there. My guess is that it's another of those dermal sinus tracts that he's had so many of. If it is, hopefully it's not one that has a tumor at the end like some of them have had. Or if it does have a tumor, that it's benign like the rest of them. I will be updating this website as soon as I can on Monday to let you all know how the surgeries went, though it probably won't be until late afternoon/early evening. My cell # is 612-749-4798. I won't have it on at the hospital, but will be periodically checking messages, so if you wanted to leave a message, please feel free to do so! When you check this website, be sure to sign in on the guestbook! Alex loves to hear from people! Or if you wanted to send cards, that's awesome too!! Alex LOVES LOVES LOVES to get mail in the post! Our address is 3534 Shady Oak Road, Minnetonka, MN 55305.

So, we've been doing fun stuff too! Alex & I went to see Happy Feet yesterday at noon. Cute! After that, we went to a program I'd signed him up for a while back at the Westwood Hils Nature Center in St. Louis Park. It was a bug program done by--who else??--"Bruce the Bug Guy"!! IT WAS PHENOMENAL!! Bruce is a former entomologist at the U & was so great w/all the kids! We got to hold tarantulas--2 females named Rosie & Ruby, giant African Black Millipedes & Madagascar Hissing Cockroaches!!! Alex wanted to hold one of the millipedes all through the program, but when Bruce said he needed to go back into his container, Alex said OK, then proceded to give the millipede a kiss good-bye!! :) It was really incredibly sweet! And of course it was the ONE time that I didn't have the video camera going! BUT we did not leave empty handed!! Alex came home w/two new pets! Bruce saw that Alex loves bugs so much that he gave Alex 2 male Madagascar Hissing Cockroaches! Alex named them Lightning (as in McQueen for all you CARS fans out there!) and 'Mater! They're really COOL!! I'll have to take a picture of them & post it! After the program Alex & I went to Build-A-Bear Workshop so that Alex could make his traditional birthday present for Jorge. Jorge's bday is this coming Friday, but due to Alex's surgery, I wasn't sure he'd feel up to doing it then, so we did it early. Alex always makes Jorge a stuffed animal--this time he chose Mumble the penguin from Happy Feet!--& then records a personal bday message to his Daddy that they put in the paw of the animal. It always says "Happy Birthday Daddy! I love you!!" and then sometimes Alex ad-libs something else. He's been doing this since he was 2, so it's really fun to listen to the progression of Alex's voice each year! Here's the funny thing though--because it was so cold out, Alex & I had to bring Lightning & Mater w/us! After we did that we stopped at Arby's (if they only knew what we had in our little butter tub!)! Then we stopped at PetCo to buy a real home for "the guys". Alex was so excited to get it set up when we got home! I have to mention that Jorge was LESS than thrilled! Bugs give him the major heebie-jeebie's, but I think if he'd just hold one of the guys for a little bit, he'd really warm up to them. After all, I was TERRIFIED of bugs until I gave birth to a little boy that happened to love them! Now I think they're really cool, and have a great appreciation for them! However, I still WILL NOT HESITATE to smash a centipede to smithereens the minute I see one, and the same goes for mosquitos. There are just some bugs that deserve no mercy! Millipedes are VERY cool though! I'll post some pics from our program yesterday, so don't forget to check out the photo page! Alex is LOVING school! He has blossomed SO MUCH in the way of confidence w/kids. He used to be SO wary of other children. Now he loves to play w/them & doesn't cling onto my leg for dear life if there are kids around! It's a blessing!!!! Today we are going to go to the zoo as a family, then afterwards we will be going to Jorge's parent's for dinner, and then Max will be staying there. Max is getting so BIG!!! He was 4 1/2 mos. old yesterday! And last Monday, at his 4 mos. checkup he weighed in at a very healthy 14 lbs. 3 oz.!! Max is VERY luck to have Alex as his big brother. He just dotes on him!!! Alex LOVES having Max & just loves him to death!! For Thanksgiving we will be going to Jorge's parents at 3pm. Hopefully Alex will be up to it! We always look forward to seeing the whole family & having a yummy turkey dinner!!! OK, I need to run. Bless you all for all of your thoughts & prayers!! Keep in touch, please, and have a VERY HAPPY THANKSGIVING!!!!!

All our love,
Amy, Jorge, ALEX & Max!!!!

Sunday, October 22, 2006 11:49 AM CDT

Just a quick note. I PROMISE I will try to get a new update on here very soon. We're all well! Alex is doing great! He LOVES his new school! He is in Kindergarten Readiness at Immaculate Heart of Mary Catholic School, five days a week in the afternoons. He's doing so well!!! The teachers, Mrs. Van & Mrs. Gregg, are wonderful, and Alex is making SO MANY new friends!!! Max is doing great too, and is already 14 weeks old! He weighs around 14 lbs. & smiles & coo's all of the time. Alex loves him to death & thinks it's "very fun" to have a baby brother! :) Max LOVES his big brother too. And Alex is truly an AMAZING big brother (would you ever suspect otherwise??). Max really lucked out & couldn't have asked for a better one! We've been really busy this month, mainly Alex & I, and sometimes Max, going to various fall & Halloween special events. Alex & I went to the Nature Center in St. Louis Park (where Alex's 5th Bday party was held on 9/9) earlier this month for a class on how to make apple cider, and he also got to make a leaf-print t-shirt by painting real leaves w/fabric paint & then pressing them onto a t-shirt we brought. Then last week the boys & I went to a special event called Halloween Stew through the city of St. Louis Park (SLP), where Alex made a BEAUTIFUL piece of art! I'll have to take a picture of it & put it on the site so you all can see it! When he's in the mood to do art, he REALLY does some amazing pieces!! Anyway, then last night Alex & I went to the 25th Annual Halloween Party at the Nature Center, which was a blast. We both wore our costumes to that. I'll have to put pics up of that too! Jorge stayed home w/Max for that one because it was a late event. Alex & I did both of those last 2 events last year too & had a blast. Today we're ALL going to the Como Zoo in St. Paul for their ZOO Boo event, where kids get to dress up & trick-or-treat around the zoo, where staffers will be dressed up in costumes. Alex is a dinosaur (OF COURSE!!!) this year, and Max will be a black cat! Then next weekend, on Sat., Alex has a Halloween Party to go to at his Kidratee place! We're all going to that too! He has a Bday party to go to earlier that day for one of his school friends, then after the Kidratee party, Jorge & I are going to a Halloween party at some friends of ours house! The boys will be w/our babysitter, Nadine. It will be a VERY VERY busy day!!! But loaded w/fun! Alex will have a Halloween party at his school on Halloween, and then of course we'll be trick-or-treating that night! Alex is going to get a TON of use out of his costume this year!! :) We just LOVE this time of year! Jorge would love to do some of these things with us, but he's always so darned busy w/work.

Now for a bit of other news....(Wow, this isn't quite as brief an update as I thought it'd be--go figure!) Alex's next surgery is set for Monday Nov. 20 at 8:45am. This will be the first expansion of his 2 VEPTR's. Dr. Perra says it should only be an overnight hospitalization, so hopefully that will be true and that the recovery will be just as brief!! It's not supposed to be NEARLY as invasive a procedure as the initial one to place the VEPTRs in Alex. Dr. Perra will just make 2 1-inch incisions--one at each VEPTR site--and expand the rods as much as he safely can. Alex will also be having a procedure done on his right knee at the same time by Dr. Dahl, who did Alex's Fixator surgery 3 years ago. The inner side of Alex's right knee is growing faster than the outer side of it, thus causing Alex's right knee to bulge inwards, causing somewhat of a "knock-knee". This also makes it hard for Alex to stand on his right leg, as the knee problem makes the right leg a bit shorter. SO, Dr. Dahl is going to place 2 staples, one around each growth plate, on that inner right knee. This will temporarily stop the growth of that inner knee, hopefully allowing the outer knee portion to catch up in growth. Kind of crazy, huh? Just when we think nothing else could possibly pop up w/Alex, it does. I guess he just likes keeping us on our toes! Anyway, Dr. Dahl said he would normally do this procedure as a same-day surgery, so hopefully this recovery will be quick too! Since it's the week of Thanksgiving, Alex hopefully won't miss too much school. We're very hopeful that he'll be ready to go back that following Monday! Those procedures will be done at the same time, and will be performed at Gillette's Children's Hospital in St. Paul. Please keep Alex in your thoughts and prayers for a safe surgery & speedy recovery! Thanks to you all!! OK, I'd better run. Hope you're all doing well! Don't forget to sign in on the guest book! We love to hear from you all!
Love,
Amy, Jorge, Alex & Max

Monday, July 17, 2006 1:42 PM CDT

GOOD AFTERNOON EVERYONE!!!!!!!!
Well, here's an update that you probably weren't expecting!
We have VERY exciting news!! BABY MAX HAS ARRIVED!!!!! On Sat. 7/15, we took Alex out to eat at Benihana, a Japanese restaurant--the type that cooks your meal right in front of you while flipping the spatula, knife, etc. After dinner, as we were walking out to the car, I had a sneaky suspicion that my water broke! We drove home & packed a suitcase for me & one for Alex, called my OB clinic & headed to the hospital to see if my water had indeed broken. I made Jorge stop at Walgreen's first though to buy some new tapes for our digital video camera! :) Jorge couldn't believe it! Jorge's parents met us at Fairview Southdale Hospital in Edina so they could pick up Alex. We didn't think he'd enjoy watching a C-Section too much! :) They did a test to see if it was amniotic fluid, and by-golly it was! We arrived at the hospital at about 8pm, they took me in to the OR at 9:35pm, and Max made his debut at 10pm on the dot via c-section!! YIPPEEEEEE!! Max was 7 lbs. 2 oz. and 19.5 inches long, even though he was 3 weeks early! Alex was 3 wks. early too! He was 7lbs. 12oz. & also 19.5"! Max is doing AWESOME!! He is totally healthy & happy, with none of the problems Alex had to endure. He's eating & sleeping really well. It's such a change & so totally NEW to us to just be able to hold him right after he was born! Jorge got the whole delivery on video & the anesthesiologist showed Jorge how to position the viewer on the video camera so that I could also see them deliver Max! What an unbelievable experience!!!!! I actually watched the video again last night before bed! We will be in the hospital probably until Wed. Alex has his 5-yr. check-up w/his pediatrician Wed. at 1:45 that Jorge will take him to, and then I think they'll come pick Max & I up. Alex is BEYOND thrilled about Max!!! He is just SO excited that he's finally here, and yesterday while he was visiting he just wanted to help out with EVERYTHING! He's going to be an INCREDIBLE big brother! Jorge is soooooo happy too. When I watched the video of Max's birth again last night, after Jorge had left, it brought me to tears listening to Jorge as he videotaped the whole thing. He just had this wonderful, AMAZING laugh that truly conveyed how incredibly happy he was/is! We ALL are ecstatic about Max's safe & healthy arrival! I've taken tons of pictures, of course, but this hospital has no way for me to upload them onto this site. They also have no way for me to access any part of the internet other than the caring bridge website, so unfortunately I'm not going to even be able to email anyone about this blessed event & update! I'll just have to hope that some of you still check Alex's site w/out my emailing you about an update. And pics will just have to wait until we're home. We think Max looks like me! When Alex came out, there was no doubt that he was a Molina, as he totally looked like Jorge, and still does! But Max definitely has more of my qualities! His hair is a lighter brown, his nose is mine, and his eyebrows/eyelashes are quite fair, like mine were when I was a baby. We think his skin is a little fairer than Alex's was too, but it's kind of hard to tell that for sure. But no matter what, he's absolutely gorgeous!! His full name is Max Michael Molina & we all love him to death!! I am unable to nurse, due to the anti-depressants I have to take, so he just chows down on Enfamil Lipil w/Iron! He's such a cutie! Alex loves to rub his head & tell him he's such a cutie-pie! :) Max is right next to me here in this lounge area in his little bassinet making the cutest noises! He got circumcised (sp?) this morning, so he's been a sleepy little guy today. Alex is staying w/Jorge's parents right now & they brought Alex to visit for the first time yesterday. Jorge went back to work today & will again tomorrow, but will take W, TH & FRI off, and the wkend too of course. He just started a new job a week ago today, working for Medica in Minnetonka, and he's really liking it. Now, instead of having a 2-hour commute to work every day, he has a 14-minute TOTAL (7 mins. ea. way!) commute! Anyway, so he'll have those days off, then my parents are coming up to help out this coming Monday & leaving on Sat. 7/29--my birthday!! SO MUCH going on! What an awesome Bday present Max is! :) Anyway, there is our big news! Hopefully some of you will check this site & find out about our big news!! :) We are at Fairview Southdale Hospital in Edina, MN, Room 404! Our room phone # is 952-924-5418. Calls and visitors are welcome! Hope you're all doing well...we sure are!!
:)
Love,
Amy, Jorge, Alex & Max!!!!!

Thursday, June 15, 2006 7:20 PM CDT

Today was WAY better than the last 2 days. Alex still has pain, but between the Motrin & the Tylenol, it has been tolerable for him it seems. So the trip to IA is a go as of right now. Jorge & I were talking this morning & we are thinking that Alex's pain is more muscular than bone related. Alex was SOOOOO tense while we were taking off those Steri-Strip bandages off of his back, and we're thinking that he probably tweaked or pulled something in his back, as it took quite a while to get them off. Alex had PT this morning back at Gillette's & I spoke to the nurse that was helping take care of him on Tues. when he was in the severe pain, and she said that totally makes sense. She said that if there were a true fracture, even a hairline, the pain would slowly be worsening, not getting better. So WHEW!!! (We hope anyway!!) I just wanted to let you know the latest. Thank you all for your continued thoughts & prayers!!!! We love 'em!!
Love,
Amy
p.s. If you're reading this & are unsure what pain/fracture I'm referring to, please click on the "read journal history" button up top & read my entry from yesterday.

Wednesday, June 14, 2006 4:03 PM CDT

Alex has had a (hopefully) minor set-back in his post-surgery recovery. Yesterday morning around 6 he woke in just a tremendous amount of pain. We gave him Children's Tylenol, which helped for a little bit, but by the time 10am rolled around, the pain was even worse, and I ended up giving him some of the T3 (Tylenol w/codeine) that was left from right after his surgery. That helped, but again, by the time 4 hours had passed & I could give him more Tylenol, he was in a lot of pain again. I had called Dr. Perra's (the ortho surgeon who placed the VEPTR) office early in the morning regarding the pain. Dr. Perra was in surgery all day, but they did get Alex an appointment w/another ortho surgeon at Gillette's, Dr. Novacek, but unfortunately couldn't get him in until 4:30pm. We were very concerned that there was an infection, or an abcess, or that one or more of the titanium bars had come loose. Whenever we asked Alex where the pain was, he always said it was in his back. It was the longest day, and Alex was once again completely dependant upon me to do everything. The poor little guy couldn't even walk or sit up on his own. It was like we'd just brought him back from the hospital after his surgery, all over again. The good news is, none of our fears mentioned above seem to pertain to the pain he's experiencing. His xrays appear just as they did immediately after the surgery. The bad news, Dr. Novacek isn't really sure what's causing the pain, but this is what he thinks it is: He thinks that the lower hook on the lower titanium bar that is hooked into Alex's bone is causing some stress on the bone, perhaps even some hairline fractures, though none were immediately evident on the xrays. He basically prescribed rest for Alex for the next couple of days. So we are back to Alex being on the couch & me being his go-fer for everything. He has been in pain today, though it seems not as extreme as yesterday, and it was definitely worse this morning than at the present. I did go out & buy some chewable Children's Motrin as well, so have been keeping him on a steady dose of medicine every 2 hours, alternating between the Tylenol & Motrin so as not to overmedicate him. The Motrin has really seemed to help. We just pray that things continue to get better. It just breaks our hearts to see him in pain like this again. I try so hard to be strong for him during the day, but I am human. And sometimes I just break down. I just try to not do it in front of Alex, though if I do, I just explain to him how hard it is for me to see him in so much pain & to not be able to just make it go away. This morning, when his pain was so bad (before I got the Motrin), I just felt like I was drowning. But you can just hope for the better, and this afternoon has definitely been better than this morning. Hopefully we'll still be able to go see Grammy & PopPop in IA this Sat. Anyway, just thought I'd let you all know. Please keep those thoughts & prayers coming. We need every bit we can get. And bless you all.

Love,
Amy

P.S. By the way, Max is doing great in my stomach. He's very active! I'm 33 1/2 weeks now. I just wish he was going to have a bedroom when he arrives!! But there's really no way Jorge will be able to finish by then. It's only 6 weeks away, and we're a long way from finished.

Monday, June 12, 2006 2:29 PM CDT

Well, sometimes when it rains it pours! I had my carpal tunnel surgery on June 1st, and that went really well overall. Dr. Van Heest was the surgeon, and she did an endoscopic procedure, which was WAY less invasive than the carpal tunnel surgery I had on my right hand 13 years ago! The procedure itself only took about 6 minutes, can you believe it??! Dr. Van Heest is also the surgeon that operated on Alex's right hand & left arm/shoulder. It was nice to see her again! I have a follow-up appt. w/her & the hand nurse tomorrow. It was supposed to be last Tues., but I missed that one. More on WHY I missed that in a minute. We stayed at Jorge's parents after that for some extra help, and they were awesome! I'm not supposed to be lifting anything heavier than a coffee mug w/my left hand, so I really needed the help. His parent's ended up helping us even more than any of us could have anticipated! What do I mean? Well, that next Sat., 6/3, I was having contractions, but nothing serious. But then on Sunday morning, 6/4, the contractions started coming every 2-4 minutes & were painful. I called my OB & they said to come to the hospital. Once there, the ended up admitting me, and I wasn't discharged until Wed. 6/7. They pumped me full of IV fluids & had me on the IV med Magnesium Sulfate to stop the contractions. The good news is, my cervix didn't really change too much. So they termed it more "pre-term contractions" instead of full "pre-term labor". But since the contractions were so regular & frequent, they wanted me in hospital. While there, they also ordered a neurology consult (no, not because they thought I was NUTS, for all of you HA HA people out there! :) ) to address the frequent, severe & debilitating headaches I'd been getting for 3 weeks. The did an MRI & luckily there was no sign of any clots or aneurisms, etc. The neurologist put me on a 3-day IV steroid treatment to try to break the cycle of the headaches. It DID help, though they're not gone completely. But now I'm only needing to take medication once a day for it, as opposed to the 6 times I was previously. They sent me home with some Terbutaline, an oral med to stop contractions. My OB said I didn't need to take it on any kind of regular schedule, but that if the contractions started coming frequently again to take a pill & hopefully that would save me a trip to the hospital. I had a follow-up w/my OB on Fri. & my cervix hadn't changed since Wed., so that's good news. They also performed a test in hospital called a fetal fibronectin test & that came back negative, which is a really good thing. So, just something else to add to the drama that is our life! I'm feeling a lot better now. I'm still having contractions, but nothing nearly as regular. I've been given a PT prescription for MyoFascial massage to try & treat the headaches & I'll have my first one this Wed. The headaches will be further addressed after baby Max comes & the neurologist has suggested, and I agree with, a daily preventative-type med therapy for them. But there's nothing like that that can be done while I'm still pregnant.
Alex is doing great. He's still in pain some, but reg. children's Tylenol seems to do the trick. He's fully mobile now, though he tires easily still. He's definitely getting back to his goofy self, which is wonderful. We really missed that! We're going to swing by Kidratee today to watch & hang out. We've done it a couple other times, and he really enjoys it. He can't wait to get back to doing it himself! We've been given the OK to travel by my OB, as long as the reg. contractions don't start up again. So this Sat. Alex & I are heading down to Shenandoah, IA to visit my parents. Jorge will drive us half-way to Ames, IA & then Mom & Dad will meet us there to drive the rest of the way. If I start having contractions in the car--which I'm supposed to get out of at least every 2 hours (it's a 7-hour trip)---we'll have to turn back. The following wkend Alex & I will be riding w/Grammy & PopPop to KC, MO to see my brother & his family, so that will be awesome too!! It will be nice to have a rest & extra help again! Plus, this will give Jorge uninterrupted time to work on our VERY long-going home addition. Before I was admitted to hospital Jorge got Alex's "new" room (our old bedroom) painted the red that Alex chose & got our bedrooms switched around. So we're now in Alex's old bedroom, surrounded by a gazillion stuffed animals! Hopefully Jorge can get the addition finished before Max comes so that we can have our master bedroom & Max can have his room (Alex's old). The problem is time & money, both of which we never seem to have enough of (just like everyone else!!) to finish this addition! I wish we could just win the lottery & hire someone to do it! I guess you have to buy a ticket before you can actually win it, huh? Alex is LOVING his new RED room though!!!!!! And honestly, I'mn really liking his old room! Ok, I need to go. Gotta give this hand a rest again & ice it. Hope you're all well. And I hope there won't be any more drama to report until Aug. 2, my c-section date!!!!! Please keep signing the guest book & emailing. It really helps to know you're all out there!!! Thank you!!!
Love,
Amy

Sunday, May 28, 2006 10:10 AM CDT

Whew...I apologize for it being a while since my last update. It's been a heck of a recovery. It's just been such a long one. I guess I'm just used to how Alex has bounced back so incredibly quickly with all of the other surgeries. On a positive note, he is able to get up & move around some on his own now. He can do some walking on his own & has been trying to do some of his Kidratee kicks and punches. We tried to stop by Kidratee yesterday (Sat.) morning, but unfortunately they were closed for the holiday weekend. Alex was pretty upset about that, as he'd really been looking forward to seeing Johnny Bravo, Jessica & Kidratee Man. I finally got him to calm down with a good-old calm-a-kid-down stand-by...a donut! We'll try again next week. Alex still needs help with changing positions, sitting up, getting up & down off of things, sometimes just needing us to pick him up & put him wherever. This past week was, pardon my french, a living hell. It did get better towards the end. Yesterday, I don't think I cried once! I think it all just finally came tumbling down on me, you know? I try to be so strong & just sort of stuff hard things & emotions into the proverbial "closet", and that closet just finally burst open & I basically had a nervous breakdown. That of course rubbed off on Alex, so we were both just a mess, but definitely more so me. Jorge felt it a bit, but only once he got home from work & saw what a complete basket-case his wife was. It finally all just got to me & then my depresssion kicked into overdrive, with my anxiety along for the ride. I tried so hard to be a good Mommy to Alex, but I just couldn't seem to get ahold of myself. All I could do was cry. I felt so bad for Alex, because it hurts him to see Mommy so sad & he tried so hard to make it better, and wanted so badly to get Mommy a stuffed animal or something to make me feel better, but he couldn't get up from the couch. I truly thought I was going to lose my mind for a few days there. All the days of stress, and being trapped inside for nearly three weeks just finally got to me. And to make matters worse, I just came down on myself as being a "bad mommy" for feeling this way, when I had a little boy on the couch who had been through so much more than I had. I just felt so selfish. I didn't know what to do. I had also just been diagnosed the Friday before (5/19) with gestational diabetes. So when I was really depressed & anxious, all I really wanted to do was go to DQ for a big old Blizzard, but I couldn't even do that. And peanut butter crackers just weren't going to have that same comforting effect. My friend Krista and my brother Brian both came to my rescue by phone on Tuesday when I was ready to check myself into the hospital. Thank you guys so much. I don't know what I would have done without you. Jorge was at home with Alex by that point, at least, so poor little Alex didn't have to hear Mommy lose her mind, again. To add to matters, I'd been battling a migraine for nearly 2 weeks, and when I called my OB's office, he was on vacation, and the doctor there refused to prescribe the medication that MY doctor had previously prescribed for me, telling me to "just go to the ER". Well, when you're in a major depressive and high anxiety state, the last thing in the world you want to do is go sit for 8 hours in an ER. I tried my primary doctor for a prescription, but she wouldn't prescribe anything, stating I'd have to go through my OB. I just felt so hopeless. THANK GOODNESS for my MOMS Club, as they've been delivering meals to us 3 times/week the last couple of weeks, otherwise, I don't think we would have eaten! I certainly wasn't in any frame of mind to cook. It wouldn't have even crossed my mind! THANK YOU MOM'S CLUB!!! YOU ARE ANGELS!!! Because I didn't have enough on my plate, on Thursday of this past week I met with an orthopaedic hand surgeon (actually the one that did Alex's hand surgeries) regarding my terrible carpal tunnel syndrome. After doing the nerve tests it was concluded that my nerves in my left hand are pretty much shot, and I will be having surgery this coming Thursday, June 1 to try & fix it. They will only be giving me a local anesthetic/block on my arm, so that the medicine doesn't go near the baby, so I will be fully awake for the procedure. They are afraid if I wait any longer, I will suffer permanent nerve damage in my left arm & hand. Luckily, by Thursday I was in a somewhat better state of mind, so I took the news pretty well. And I guess I'd rather have the surgery now, when I only have one child to take care of instead of 2. But this does mean more time cooped up inside. We will be staying with my in-laws (BLESS THEIR HEARTS & SOULS!!!!) through the weekend while I begin my recovery. The surgery will be performed endoscopically, so at least their won't be a huge incision to heal as well, like there was when I had the carpal tunnel surgery done on my right hand 15 years ago. I just pray that I'm all recovered by the time Max arrives---that's what we're naming our baby, Max Michael. I have a c-section scheduled for August 2 at 7:30am, if I last that long. Alex came 3 weeks early!!!!! Anyway, enough about me. This is Alex's website. As I stated earlier, he is getting better. We've had lots of doctor appts. & he actually started Physical Therapy with his former therapist Melissa. He'll be receiving PT 2 times a wk. for the first month, then 1 time a wk. for the next 8 wks. His appt. on Friday was greatly improved from his appt. earlier in the week, so that is great news. Melissa has known him for years now, and she really can get him to push himself. She is so wonderful!!!!! Alex doesn't see Dr. Perra again until June 28, so we'll see what he says at that point about Alex's back & recovery. Alex & I actually went out in the heat yesterday & went to the MN Zoo!! That was our first outing that wasn't dr. related since his surgery. Even though it was really HOT & really PACKED (it was the first day on the new temporary exhibit at the zoo of giraffes, zebras & ostriches, so it was UNBELIEVABLY busy!!!!), I think it was something we both really needed!! The only bummer was I didn't get to have my usual afternoon snack with Alex of the Dippin' Dots ice cream, due to my diabetes, and had to have my wheat/peanut butter crackers instead, while I looked longingly at Alex's ice cream! :) I did have a little watermelon though, so at least I got some sweetness! From the time I was diagnosed w/the diabetes 2 Fridays ago to this past Friday, I'd actually lost 2 pounds. I didn't really need to change my diet too much, as I'd been eating fairly healthy, but I DID need to change my portion sizes a lot & also have 3-4 snacks a day, instead of my former 3 meals a day. And I've been walking as much as I can. The zoo of course was a ton of walking! My blood glucose levels have all been really great except for the one morning where I said "to hell with it" & had a really HUGE glass of juice!!! Even then, I was just slightly high. Max is doing well in my tummy, and being very active. He really likes to stick some appendage right up into my right ribs, which is just lovely! I can't complain about that though. I'm so happy that he's so active. It's very reassuring, and I will take every kick & punch & flip he gives me. Alex believes that he's already practicing his Kidratee!! He's very excited about being a big brother, and he's going to be an amazing one. I don't think we could ask for a better role model for Max, as Alex is just such a great kid all around. He's just so nice & friendly, kind & considerate, and funny to boot. Those of you who know Alex & who've spent any time with him know exactly what I'm talking about. We are very blessed. Today we will be going to have our usual Sunday lunch with my in-laws, Chita & Neto, in New Brighton, so I'd better sign off for now. I'm sorry about the delay in the update, and also sorry for the sort of downer mood at the beginning. Things are definitely looking up, and Jorge has been really great with support once he realized how bad off I really was. I'm blessed to have him too! I hope you're all doing well & having a great long holiday weekend. Please keep signing in on the guestbook, or shooting us an email, or both. It really helps to know you're out there thinking of us all. GOD BLESS!!!

Love,
Amy

Tuesday, May 16, 2006 12:12 AM CDT

It's been a bit of a rough go at times, here at home. But we're coping the best we can. Alex still has quite a lot of pain. He did take about 15 steps on Sunday night, which was awesome! Afterwards, he was completely exhausted. Just the smallest amount of movement on his own part leaves him completely exhausted. We tried going outside briefly yesterday in the stroller. I just walked him up & down our driveway. I think he lasted about 15 min. before the pain got too bad. He's been having pretty good nights overall. Jorge still gives him pain meds at midnight & 4am. It's during the day that it's much harder for him. If anyone would like to visit, we'd love to have you! I think it would be a really welcome distraction for Alex, who is cooped up on the couch the entire day, with Mommy along side him. I am afraid to leave his side, in case he needs to change his position. Alex can't even play games, because it hurts him too much to lift his right arm, due to the surgery site being on that right side. It's very hard to see him in so much pain & so uncomfortable. Please keep those thoughts, good karma & prayers coming! Give us a call if you'd like to come & visit!!
:)
Love,
Amy

Sunday, May 14, 2006 3:24 PM CDT

Here it is, Sunday, Mother's Day, and we're home! Alex got discharged late yesterday afternoon, hence no update yesterday! We were busy trying to get Alex comfortable at home on the couch. He still cannot sit up or stand on his own, or walk, but we'll get there in time. This is definitely the most difficult recovery he's ever been through. But he handles it with his usual good humor and positive outlook. Last night, when we'd put him to bed & I was reading to him he said "Mommy, I had a really fun time at the hospital. I really loved it & especially loved the tour! (that he was given of the hospital before his surgery)". I told that was great & maybe he could get another tour in 6 mos. when he has surgery again. He asked if he was really having another surgery then, and when I said yes, he raised his arms in the air & cheered! Can you believe how lucky we are with this kid???? He had a good night last night overall. Jorge got up to give him his pain meds at midnight & 4am. Other than that, Alex slept through the night except for needing to potty one time. We got to bring home the egg-carton mattress from the hospital, so that made his bed really cozy! And he slept until 9:50 this morning, which means we did too, so we all got some much-needed sleep last night! Alex's day yesterday at the hospital was good too. He had PT at 9am & did a GREAT job of sitting up & standing up with help. He even let ME help him stand! That was really good for my confidence too! And I practiced lifting him & carrying him too, which we'll need to do initially since he can't get around on his own. It really helped me, to practice like that. After I realized I could do it, I was much more comfortable with the prospect of bringing him home. I just had to listen to my own advice that I was giving Alex---'you can do it'!! After his PT appt., Alex had a surprise visitor---Ronald McDonald! Alex thought that was really cool. I did too actually! Jorge came about 4pm, while Alex & I were walking around w/Alex in the wheelchair. I think we got out of the hospital around 5:30. We had to stop at the grocery store on the way home to buy hotdogs! Can't have a home without hotdogs!! Today we've been relaxing at home. HAPPY MOTHER'S DAY by the way to all of you Mommies out there! Jorge got me some BEAUTIFUL flowers & some more minutes for my cell phone so that I don't keep going over my minutes (You all know how chatty I can be!!!), and Alex made me an AWESOME white kitty at Build-A-Bear that he recorded a wonderful little Mother's day message for! I push the kitty's arm & I hear Alex's little voice say "Happy Mother's Day! I love you Mommy!". It's awesome!! And Alex named the kitty Mira, of course! Jorge's parents stopped by at lunchtime with some leftovers from the Mother's Day party they had yesterday at their house, so we had some yunny burgers & cake for lunch! Thank You Chita & Neto! Tomorrow Jorge will go back to work, so we'll see how Alex & I get along together on our own! Hopefully we'll do ok! The doctor wrote an order for Alex to have PT at the Gillette's clinic here in Minnetonka, so Ill call tomorrow & get that set up. He'll go back to his old phys. therapist, Melissa, whom he loves! He'll have it 2x a week initially, then 1 time a week, for 3 mos. total. Yesterday at the hospital & at home Alex was practicing his Kidratee when he was feeling well enough! He's done a little today too! I think that Kidratee has been such a great thing for him, and it's such a great motivator for him now! Hopefully he can get back to it this summer some time! OK, I'm going to sign off for now. Thank you to everyone for all of your thoughts & prayers! Please keep them coming for a continued safe & speedy recovery at home! Thank You!!!!

:)
Love,
Amy

Friday, May 12, 2006 9:36 PM CDT

A quick update, because I'm absolutely exhausted. So is Alex. Today was an unbelievably busy day for Alex. He had 2 PT appointments today. They tried to make him stand, which was a first. He still cannot put his full weight on his legs. It's just too painful. But he handled it like the little trooper that he is. He really, truly amazes me. He stood up for them, which was incredibly painful, and barely made a whimper, just an "owie" here & there. He's so unbelievably strong, and he just knew he had to do it. And he even did it twice. He is a miracle, and I just thank God that he's my little boy. I couldn't be any luckier!! He also actually SAT on the edge of his bed all by himself for about 5 seconds before tipping over during PT. Thankfully he tipped over on the bed & it was really soft. Amazingly, I got a picture of it. I'll be posting it, so be sure to check the photo page. The nurse also took him to have a bath, which was really difficult for him because he had to lie on this hard plastic bed thing to have it done, without any padding. Again, handled it like a trooper. They gave him a suppository this morning & he finally went poopy this afternoon. He'd been complaining a lot about tummy pain, and after he went potty he felt much better. Poor little guy! The PT people also had Alex get back in the wheelchair & go for a stroll, which he enjoyed more than yesterday. He had me take him down to 2nd floor to the gift shop, where he picked out a new little kitty stuffed animal. Alex also had a spine xray today, which he was SO brave for. They wanted him to stand if possible, but I told them it just wouldn't be an accurate xray, due to the fact that he can't do full weight-bearing, especially on his right leg. So they had him sit & a tech & the nursing assist. Dottie held his hands so he could sit upright the whole time, and he did just great! They gave him a big stuffed kitty that meows for being so brave. Dottie told me on the way back to Alex's room that in all of her years working there & taking kids to xray (Dottie's in her 60's & has been there a long time!), she has NEVER seen a child come out of xray with a prize like that. She said they usually get stickers. Just goes to show you how special Alex is. Alex's friends Sam & Ella came to visit with their Mommy, Jenn, which he loved! They brought him this really cool bug vacuum toy that has a magnifying glass in the compartment the bugs get sucked into so that you can look closely at them. Alex LOVED it & spent a LOT of time sucking up little pieces of paper I tore up for him, since there weren't any bugs available in the hospital. THANKS GUYS!! THAT WAS AWESOME!! Jorge really enjoyed it as well when he got here this afternoon! :) Alex didn't eat any of his lunch today because his tummy was feeling so bad. But tonight he ate 2 pieces of pepperoni pizza, his whole bag of Lay's potato chips, his chocolate pudding AND a cherry popsicle. WHAT A GUY!!!! The doctors are thinking Alex might come home tomorrow. He's going to work with PT again in the morning, and then we'll see I guess. I have mixed feelings about it. I guess I would really like to see him more mobile before he comes home, but then I'd also just love to have him home in his own bed so I can cuddle him & snuggle him at my every whim. I still haven't been able to hold him, but I have been getting TONS of WONDERFUL hugs & kisses. Gosh, I love his little kisses...
So, we'll see what the docs say after PT. Dr. Perra was still convinced this morning that Alex was going to go home today, but I basically said that was nuts. I didn't talk to Dr. Perra, but I did talk to Dr. Salzman & conveyed my feelings to him! How can you send a kid home that can't even stand?? And that hasn't even been able to try??????? He agreed that tomorrow would be the earliest. They gave us the option of taking home a rental wheelchair for Alex, since he can't walk yet, but I think we're going to just use his big stroller. He's used to it--so are we---, it reclines and it's soft. Plus it's collapsable with one hand, whereas a wheelchair would be a 2-handed effort and would be heavier. I'm 7 months pregnant with a bum left arm & hand. I don't need things to be any more difficult! And I want Alex to be comfortable! Music Therapy came by Alex's room today too, and he got to play a variety of instruments along with the therapist that was singing & playing guitar. She was from MacPhail. Alex really loved doing that! She asked him what songs he'd like to hear, and he requested something from the band Franz Ferdinand!! When she said she didn't know anything by them, he requested something by Beck!! :) She didn't know anything by him either, so she brought out her little notecards that told him his choices of songs. :) He chose "Five Green & Speckled Frogs" and "It's a Small World"! I've got a picture of that too that I'll try & post. OK, so much for a quick update. I'm exhausted & going to bed. Don't forget to check out the photo page and to sign in on the guestbook! Thank you for your continued thoughts and prayers!!!!

Love,

Amy

Thursday, May 11, 2006 8:07 PM CDT

Here we are, another day nearly done...
Today was a better day for Alex than yesterday, though still with quite a lot of pain. It's definitely getting better though! I think it really helps that we've come up with a really good pain medication schedule. This way we're always on top of the pain instead of trying to catch up to it. They removed Alex's cathetar today, and even though they said it would probably take him 4-6 hours to urinate on his own, he did so within an hour! He can't get up yet to use the bathroom, so they have a special "urinal" that we use right in the bed. He's really done a great job with it!! This morning started out with Alex definitely seeming more like Alex! The minute he woke up, he started winging his stuffed animals out of his bed, being a goofball and smiling, which was AWESOME to see!! Pretty soon the pain caught up though, and then he was squirming in pain. That's when I had a little conference with his nurse to see if we could come up with a better plan & schedule to help control his pain. Since then it's been much better. PT (phys. therapy) came today & got Alex into a wheelchair and then he & I took a stroll all around the hospital, the 4th floor anyway. It was really painful for him to get into the wheelchair, but once he was in it he was ok. PT plans on working with him 2 times tomorrow to try & get his mobility going. He has moved himself a little bit in bed, but only an inch or two, trying to turn himself. He's such a little trooper though, and ALWAYS wants to try doing it himself first. He truly amazes me with his strength & spirit! PT is going to try actually taking him down to the PT area tomorrow so that they can work to their fullest with him, but we'll have to see how the pain is before attempting that. If he's still not up to it, they'll do the PT in his room. This morning around 9am the nurse came in & said she'd talked to Dr. Perra & he said Alex could go home tomorrow---I was like "WHAT?!?!?!?!?!!! HE CAN'T EVEN MOVE!!!!", so after further discussion with Dr. Perra, it was decided it would be better if he stayed longer. WELL, DUH!!!! I'm REALLY thinking that Dr. Perra had Alex mixed up in his head with someone else, because there is NO WAY they would send a child home that cannot even move himself or walk! Geez, I about hit the floor (and roof!) when I heard that! They still don't know when Alex will be discharged. We will have to see how he handles PT tomorrow, how his pain is, and how his mobility is. Maybe he'll be discharged this weekend?? Who knows. We just take it day by day. Alex had a couple of special visitors today, which he loved! Elen, from Kidratee, came to visit & Alex loved seeing her! Unfortunately PT came right at that same time, so it was a little chaotic in the room and Alex didn't get to talk to Elen too much. The other visitor today was very special indeed! Alex had a therapy dog come & visit him! Her name was Sparkie, or Doc Sparkie as she was named after her 500th therapy visit! She was a Besenji, which is a really sweet little short-haired dog with a curly tail that doesn't bark. She came right up on the bed with Alex & curled up next to him, sometimes giving him kisses! Alex LOVED it!!!!! He has this little pillow that he was given here at the hospital & he insisted that I get it so that Sparkie could lay her head down on it, which she did!! She was so super sweet. She stayed with him a good half hour! I got some really great photos of the 2 of them, but don't have a way to get the pics up on the computer tonight. Tomorrow I will get some up, when there is someone that can transfer the pics from memory card to disc for me. I also got some video of the visit, so Alex will love seeing that at a later date!
OK, our little guy is getting ready for bed, so I'm going to run so I can kiss him goodnight. Maybe tomorrow I'll be able to actually hold him! We'll see... I wanted to remind everyone that Alex would love visitors! His room # again here at Gillette's is Room 458, and his phone # is 651-602-6890. Please don't call before 10am or after 7pm! Keep signing in on the guest book too!!

:)

Amy

Wednesday, May 10, 2006 9:04 PM CDT

Whew. Here it is, nearly 9:30pm, and I'm just now getting a chance to get on the computer. It's been another long day. I would definitely have to say, to my recollection anyway, that this is the most challenging recovery we've every had with the 17+ surgeries Alex has had. We ARE at least out of the ICU now. Alex has been moved to the 4 West unit of Gillette's, Room #458, Bed #1, which is a private room. His room telephone # is 651-602-6890. Phone calls are welcome, but please do not call too early (i.e. before 10am) or too late (i.e. after 7pm). Alex had another painful day today, though better than yesterday. We can only hope that this trend continues from day to day. His surgeon, Dr. Perra, hopes that Alex will feel more like his self, spirit wise if not physically, by Friday. There will still be significant pain however. He will most like be here until next week sometime. It's so hard to see him like this, and to feel powerless to make it truly better. I am a HUGE advocate for getting the nurses right in there with pain meds though! It's the least I can do. I haven't been able to hold Alex since his surgery. This is so hard. I just want to bundle him up in my lap & cuddle him, but it's just too painful for him to move. The nurses do need to change his position in his bed every 2 hours to prevent bed sores however. Alex is so strong-willed & always wants to do it himself. And boy, does he try. He tries SO hard to move on his own, but it's just too tough for him to do the whole position change. But he DID move himself a little bit tonight, around 6:30, so that was a great thing for his self-confidence! We're so lucky that he's so verbal, and that he's really able to communicate with us his needs, especially in the sense of what type of pains he's feeling and where. Not all parents are that fortunate! We are really blessed by that. This morning, while he was still in the ICU, his IV went "bad", meaning the nurses were no longer able to get meds to go through, so they had to remove that IV & start a new one, which meant a new poke. That was so hard on Alex. But he was very brave, and the nurses were as gentle as they could be, and we made it through. Jorge stayed in the ICU with Alex again last night, trying to get a little sleep while sitting upright in a hard chair. Needless to say, he really didn't sleep. So this morning he went home at about 8am to sleep & got back here around 5pm after driving an hour through rush hour. We are both going to try sleeping in Alex's room tonight. Jorge will take the sleeper chair that they have (much better than a hard upright chair!) and I will take an air mattress on the floor, generously loaned by my good friend Virginia! Thanks Virginia!!! When they moved Alex to his new room at 2pm today, they put one of those "egg-carton" mattresses that I previously mentioned on his new bed before they switched him over. It seems MUCH softer now, plus we get to take that one home with us! Good thing Jorge hadn't made it to Target yet! Drs. Perra & Salzman said that Alex could get up & move around today & that they'd like him to, but he just couldn't do it today. It hurts him terribly just to turn his head to the side, so I'm not quite sure how they thought he could get up & move around! Hopefully tomorrow he'll feel even better & we could get him out of bed & into a wagon for a stroll around the hospital. I think he would like that, if we can keep him comfortable. They took him off of the continuous IV drip of pain medication (Propofol) tonight about 8pm & have him on oral pain meds now, Valium & Roxicet. He still has his IV in for IV fluids & if he needs it, the nurse can still give him a little "pump" of the Propofol through the IV as a little added boost against pain. Alex did eat some solid foods today, other than jello. He had a hot dog for lunch, with jello, and for dinner he had some mac-n-cheese & potato chips. Plus, Jorge's parents, Weeta & Papa to Alex, came to visit about 7pm & they brought a chocolate-covered marshmallow that Alex gobbled right up. He still has a cathetar in for urination, but we haven't had to tackle a bowel movement yet. Alex would kill me if he knew I wrote that. So would Jorge, probably! So shhhhh! With Alex eating some solids now, it's only a matter of time before we need to tackle the latter.
Alex had a couple of visitor today, aside from Weeta & Papa. Melissa, his former Phys. Therapist from Gillette's stopped by this a.m. between meetings, and Dr. Walker, his lower-extremity orthopedic surgeon was "in the neighborhood" and stopped by for a visit as well. Alex was sleeping for Dr. Walker's visit, but he really enjoyed seeing Melissa. Visitors are now welcome to come see Alex now that he's out of the ICU! We just ask that, if someone is ill or has recently been exposed to someone who is ill, please save your visit for a time when everyone is healthy! Thank you so much! Alex would love visits once he's home too, as it will be quite some time before he can get out & about as his usual self. If you'd like to visit him in hospital & help lift his spirits, you can call the # I listed earlier in this email & let us know what time you're thinking so we can make sure we're around, in case we're venturing out of his room! OK, that's it for tonight. I'll try to update earlier tomorrow, but no guarantees! :) Thank you all again for all of your thoughts & prayers, and also for all of your AWESOME entries on this site's guest book!!! WE LOVE THAT!!! Alex loves to hear about it & have me read them to him. Please feel free to sign in as often as you'd like!!!! Bless us all...

Love,
Amy, Jorge & Alex

Tuesday, May 9, 2006 3:21 PM CDT

Today has been a rough day, hence the late update. They extubated Alex at 8:30am & he was in a LOT of pain for quite a while before the nurses finally got ahead of the pain instead of behind it. But we have to keep a really close eye on it. Alex is very tired, but only sleeps in little 15-20 min. increments, due to the pain & discomfort. He is still in the ICU, but will hopefully be moved to a reg. unit tomorrow. There are no direct phone #s to the ICU at Gillette's, so if you wanted to reach us, you would need to call the hospital # listed on this home page of his website. It will be listed in the hospital information below the journal update. Alex has 2 incisions on his back. One is 12" long & runs all the way down the right side from the top of his shoulder blade to the lower back. The other incision is 3-4" long & located more centrally. They are very painful, but with the help of pain meds, tolerable, as long as they stay ahead of the pain. If they get behind, it is very difficult & hard on Alex to catch up. His night was good. They did a chest x-ray & his lungs looked good. Today he has eaten some orange jello, orange sherbet & ice chips without any trouble keeping it down, which is great. He's currently in & out of dozing, and watching the animated Dinotopia. Jorge is with him. He has a new "neighbor" in the ICU, a little boy that cries a lot, and that has been bothering him quite a bit, so hopefully things will quiet down once the new little boy is acclimated to his new surroundings. OK, that's it for now. I want to get back to Alex. Thank you all for your continued thoughts and prayers. They mean so much to us.
Love,
Amy

Monday, May 8, 2006 11:56 AM CDT

Hello!
Well, Alex is out of surgery & everything went great!! The actual surgery ended up taking less than 2 hours, whereas they'd thought it would take 3-4! Great news, huh? Everything went super smoothly, with Alex only losing about 1 1/2 tablespoons of blood. I wish that you could all see Alex's before & after xrays. It's truly remarkable!! He had an xray done on Fri. 5/5, and his curve was at 92 degrees. Today after they placed the VEPTR & took an xray?? 35 degrees!!!!!!!! CAN YOU BELIEVE IT?!?!?!?!!!!!! The surgeons, Drs. Perra & Salzman placed 2 titanium bars in, for now. They first had to cut some of the muscle on his ribs to allow more flexability, then they attached the first bar to his 3rd rib at the top, and L1 (lumbar spine 1) at the bottom, so it's quite long. The 2nd bar is located to the right of that & significantly smaller. I can't remember exactly which ribs that one is attached to--sorry! His next procedure, to lengthen those bars, will be in about 6 mos. Dr. Perra will see, at that time if not sooner, whether the 2 titanium bars are enough, or whether he'll need additional bars up there. He will also be assessed at that time to see whether those upper bars have been enough to help straighten out his lower, lumbar curve. If it hasn't been enough, he'll need to have a 2nd VEPTR procedure done to address that curve. If he needs the 2nd one, it would probably be performed in 6 months as well, if not sooner. But as for roght now, Alex is intubated (on a respirator), sedated, and resting comfortably. I'm going to put a pic up on the photo page, so be sure to have a look! They have also put restraints on his arms, because Alex is notorious for extubating himself (yanking the breathing tube out!) when he wakes up a bit! They plan on hopefully only having him on the respirator overnight, and extubating him tomorrow morning, as long as he's doing well. Because Alex is soooo skinny, the titanium bars will be very visible from his back, and right up against his skin. Due to this, we'll need to be extra careful so that the bars don't puncture through his skin, and so that he doesn't get any pressure sores. Jorge is going to go to Target tonight to buy what they call an egg-carton mattress, due to the fact that Alex's mattress at home will be too hard & would be very painful for Alex to lie on. You probably have seen the mattress Jorge is going to get. It looks just like the inside of an egg carton, and it's made of foam. Here at Gillette's they will be turning or "rolling" Alex every couple of hours to prevent him from having pressure sores. OK, I think that might be it for right now! I'm going to get back to my little guy's bedside w/Jorge. Thank you all so much for all of your thoughts & prayers. Please keep them coming, as it's our understanding, from both surgeons, that recovery from this procedure is very painful, and fairly long. Keep checking this site, as I'll update it regularly--probably more than once a day, but at least daily. Right now he is in the PICU, Room 433-Bed 3. I'll let you know when he changes out of the ICU to a regular unit! Hope you're all well! Thank You!!!!!
Love,
Amy, Jorge & Alex

p.s. I have put a link on his website to a VEPTR website if you'd like to check it out!!

Saturday, May 6, 2006 10:12 PM CDT

Hello Everyone!
Well, it's about that time again. Alex's VEPTR surgery is fast approaching. Dr. Perra will perform the procedure, along with Dr. Saltzman, at 8:30am this Monday, 5/8. He'll be in the hospital a week or so. They won't know for certain until they've opened Alex up whether or not he will need any bone grafting or skin grafting. If he does need either or both of those things, that would lengthen both the length of the procedure as well as his stay in the hospital. The surgery is going to be performed at Gillette's Children's Hospital in St. Paul. The phone # for information at the hospital is 651-291-2848 if you'd like Alex's room #, tel. #, directions or any other info!! Alex has such a positive attitude about surgery. It never ceases to amaze me!! He's such an amazing little boy, and we are truly blessed to have him as our son!!! While Alex is in hospital, please keep checking this website for updates on his progress! I'll be updating it daily, sometimes even multiple times a day. I'll even get some pics on here! I just put new pics on with this update too, so check those out! And don't forget to sign the guestbook!! Alex LOVES hearing from friends & family!! Visitors are also TOTALLY welcome at the hospital or at home after we get back! Alex LOVES LOVES LOVES visitors too! :) Visitors are not allowed while he is in the PICU, however, so if you'd like to visit, please check this website to see if he has been moved to a regular unit. We aren't sure how long he'll be in the PICU...maybe 2-3 days? They're thinking they'll have Alex on a paralytic & under sedation again after this surgery, initially, just like after the last surgery in Feb., just to keep him from moving around too much & causing damage. We really don't know what to expect w/this surgery, so we're just flying by the seat of our pants. Anyway, if you'd like to visit, please check in. I will also post his room's tel. # after he's moved to a regular unit, if you'd like to call & check in. If you get on this site & you're not seeing any of this info, please click on "read journal history" to see if the info's on a previous journal entry. By the way, sorry if this journal entry is a bit disjointed! We had a really busy day today & my brain in kind of fried!! Anyway, please don't feel pressured to call or visit! Thoughts and prayers are equally as appreciated!!! I just wanted to let everyone know!!
So, Alex has been really busy, and really LOVING Kidratee!!! He's now a Gold Belt!! He's been going M, W, Th & Sat. He just loves it SO much, and it has done SOOOOO much for him, in the way of improving his balance, flexibility, confidence and focus. It's truly amazing what has been accomplished in the 5 weeks he's been doing this! He'll be VERY excited to get back to it once he's recovered enough! Terry Norblom, a.k.a. Kidratee Man, is his teacher & is phenomenal!! He is also the owner.
Today after his class we all went to the Mall of America for a long day of fun! We went to Underwater Adventures--twice--and then Alex had a blast riding all of the rides he's tall enough to ride in "The Park at MOA", formerly known as Camp Snoopy. Since I'm pregnant---27 weeks now!!!---I can't ride the rides, but I loved watching them & got lots of nice pics!!
Alex had his last day of school yesterday. The official last day is 5/26, but I don't think he'll be back at school before then. They are having an end-of-the-year ice cream party on 5/24, so I promised him we'd really TRY to stop by for that at least!
OK, I'm just getting too tired to really make any sense anymore, so I'd better just wrap this up. I hope that you're all doing well, and I want to thank everyone for all of your thoughts and prayers during this difficult time! Please keep in touch!
Much love,
Amy

Friday, April 7, 2006 1:23 PM CDT

Well, here we are again, gearing up for another surgery! I just wanted to give a quick update on the tooth extraction surgery from last week. After they got Alex sedated & did xrays, the dentist, Dr. Collier, discovered that the tooth they were going to remove is actually kind of holding the palate together. Therefore, since removing it would cause a new hole in his palate & a fistula up into the nasal cavity, they made a VERY SMART decision NOT to remove it! So Alex got a really great cleaning & really great xrays, all the while sleeping through it! The tooth is something that would need to be removed by an oral surgeon, but since it's not bothering Alex at all, it is by no means urgent. As Alex's permanent teeth come in, he will eventually need a bone graft in the spot in his gumline where the microform cleft was, so as long as that tooth doesn't start causing problems, it may be something that can wait until then. Dr. Collier DID however recommend a type of permanent "retainer" or "spacer" be put into Alex's mouth due to the fact that Alex's teeth are already really crowded in there, especially on the upper, so once the perm. teeth start coming in there would be a lot of problems. The problem with putting in this spacer only on the upper teeth however would be that then his bite would be off completely with the lower teeth, so it may be something needed on upper and lower. Dr. Collier suggested we see an oral surgeon for that, and while Alex was in the hospital that day, in recovery, we actually got to meet the doctor that he recommended, Dr. Wood. He is a Craniofacial Surgeon w/Gillette's, and we've made a consultation appointment to see him coming up on April 21. So I guess we'll just wait until then & see what he says! It's always something new w/Alex! He's always full of surprises--at least his body is! Seems every time we turn around there's something new to be found! He certainly keeps us on our toes mentally & physically! :) And we love him dearly for it! I think the doctors do too, because Alex's conditions always open up new avenues for them to explore! :)

As far as the VEPTR procedure goes, we're still on target for May 8 at 8:30am. Dr. Perra estimates the procedure to take 2-3 hours, maybe longer. It will all be determined once they open him up & whether or not there are any "extras" Alex will need. By extras I mean, only once they're in there will they be able to determine whether or not Alex's ribs will need any bone grafts done to them in order for the procedure to benefit him fully. And if there are bone grafts needed, he would also need skin grafts. Both of these things, of course, would require additional time for the surgery. We pray that these things will not be needed, as not only would it require a longer time spent in surgery, but also much more pain. We pray pray pray he doesn't need this. As I said before, Alex's body is always full of surprises, but this would definitely be one that we could do without. I just can't believe how blessed we are though. Last week, before his mouth "surgery", Alex started jumping up and down, yelling "I LOVE SURGERY!!!!", adding "except for the blood-sucks!", meaning when they draw blood or put the IV in. But now he knows that he can ask them to do all of that once he's asleep! I don't think that you'll probably find many kids, or adults for that matter, that would get SO excited at the prospect of another surgery!! :) Just another way we're truly blessed to have Alex as our child! Good thing too, since after the VEPTR is placed, he'll need surgery every 6 months for the rest of his growing years!

On another note, last Sat. Alex started Kidratee (karate for kids!) classes & is doing AWESOME in them!!! He REALLY loves it, and already we can see a marked improvement in his balance & flexability, as well as confidence & attention span! It's so awesome to watch him do all of his punches, kicks & blocks...And when Kidratee Man (Terry, the instructor, who is INCREDIBLE with Alex!!!) yells "CHUMBI!" (ready stance) it's unbelievable to watch Alex snap into that stance & actually STAND STILL (those of you who are really familiar w/Alex know how difficult that is for him!!!) is mind blowing!! He goes 4 days a week, M,W,Th & Sa., and really loves it. I will try & get some pics on this site eventually of him in class! Last night at class he got his ticket to test for his white belt & tomorrow morning he will most like test for it! If not tomorrow, definitely sometime next week! We got him a month's pass for Kidratee, and hopefully he won't have to wait 4 months after surgery to go back to it! We are just so PROUD of him that we could burst!! And the great thing is, HE'S REALLY PROUD OF HIMSELF TOO!!!!

Tomorrow Alex & I will be going to the Shrine Circus in St. Paul while Jorge works on the house, so I think Alex will really enjoy that as well. He had school this morning, and we're going to go the library--one of his FAVORITE places!!--in just a little while. I think Sunday we may all go to the Minnesota Children's Museum as a family. They have a special exhibit there right now of "The Magic Schoolbus", which he really loves right now. The exhibit is all about weather! Alex will be thrilled if he gets to learn more about tornadoes!!

As far as baby #2 goes, everything's going great! He's really active in my tummy, doing lots of kicks, punches & flips. I think he might be doing some Kidratee of his own!!

OK, I'd better get this finished so that we can get to the library. We hope that you're all doing well, and we'd love to hear from you!! Don't be strangers!

Love,
Amy

Wednesday, March 29, 2006 3:24 PM CST

WOW!!! March certainly has flown by, hasn't it?!?!! We sure are happy to be seeing more sun & some warmer temps! Hope you're all doing well!
Alex has been doing GREAT! He's such a remarkable child, and so strong. He's been back at school & loving it. He really missed seeing his girlfriend Mira!
Here are some things we wanted to let you all know about:

Alex is having a minor (same-day) surgery tomorrow at Gillette Children's Hospital in St. Paul to extract a tooth. It seems he has an extra tooth, and it's coming in through the roof of his mouth. Dr. Collier is the Peds Dentist that's going to do the procedure. Alex will be completely asleep for the procedure, and while he's in there, Dr. Collier's going to give Alex's teeth one heck of a good cleaning & get some really great x-rays too! 3 birds with one stone--ya can't beat that!! :)

We now have the date for Alex's VEPTR surgery. It is going to be on Monday May 8th at 8:30am. Dr. Perra will be performing that procedure, along with some other surgeons & staff, at Gillette's as well. The expected hospital time after that is around one week. We are very excited as well as very anxious for this one. This will have a very big impact on Alex's life. Though this may not straighten Alex's spine completely, the VEPTR will certainly open up Alex's ribs, allowing his lungs and heart to grow and function fully, which is the most important thing. Alex's curve will not kill him. But the curve causing his chest wall to "close in" would, as the lungs & heart would no longer have room. That's why it is so imperative for him to have this procedure done. Alex may need 2 VEPTRS, one in the thoracic area of his spine & then a second one in the lumbar area. The one that will be done May 8 will be the thoracic spine. If they decide that a second VEPTR is needed in the lumbar area, that procedure would be performed at a different time, approximately 4 months after the 1st procedure. After the VEPTR is put in, Alex will need surgery every 6 months to expand the titanium bars. After approximately 3 years, the entire VEPTR will need to be replaced, as it will have reached its maximum expansion. Then the surgeries every 6 months would continue until that device reached its max expansion. Then the whole thing will start again. We hope & pray that this will be a life-changing experience. It will also be a life-long experience, at least for a number of Alex's growing years, due to him needing the surgeries every 6 months. BUT, even with all of that, we look at this as an EXTREMELY positive thing. It's not something really that we have a choice about. If we don't expand his ribs, it threatens his life. Alex handles all of these surgeries so well. He actually tells us fairly often that he misses the hospital!! To him, it's just a new bed & new toys to play with! Please keep Alex in your thoughts and prayers throughout these times (and always!).

Another BIG thing I would like to mention is this! I am 5 months pregnant!! I've had a number of ultrasounds and at my last perinatal appointment, when they did the Level 2 ultrasound, there were NO SIGNS of any of the problems that Alex had. The baby was very active & happy and DEFINITELY a BOY!! He looked so good in fact that the doctor shipped me back to my regular OB, Dr. Immerman, for the rest of the pregnancy (unless something comes up)! We are so incredibly happy, and Alex is thrilled about becoming a big brother!! My due date is August 8, which is actually the same due date as the baby that I miscarried last Feb. I take this as a very good sign! It is also the birthday of my beautiful niece Brielle!! (Brian's oldest) And if, by some miracle, our little baby boy shows up on his due date, his bday would be 8/8 and Alex's is 9/9! Kind of cool, huh?! My pregancy has been going great, with only some bad carpal tunnel syndrome for me to deal with. I'm getting Phys. Therapy for that. Please keep us all in your prayers for things to continue on this positive path!

Hope that you're all doing well! We'd love to hear from you!!

Our love,
Jorge, Amy & Alex

Wednesday, March 1, 2006 10:21 AM CST

Hi!
Well, it was a week ago today we brought Alex home. Being home has definitely had it's ups & downs. Alex has good days & bad days. The pain is pretty much under control now. He does still need to get Motrin & Tylenol, though regular Tylenol instead of T3. I'm pretty exhausted & looking forward to a Mom's Night Out w/my MOMS Club gals this Sunday. We're meeting at the clubhouse of one of the Mom's condo buildings & watching the Oscars. We're "dressing up sweats", so we just wear our comfiest clothes & then we'll have feather boas, etc. to dress it up. We'll have lots of yummy appetizers & desserts, so it should be a fun night, and one that I really REALLY need. Alex got his stitches out yesterday, and the incision site looks great. Dr. Lam said Alex could start back to school any time. He was going to start today, and last night he was really excited about that. But this morning he cried & cried about going to school today, so I'm not sure what's going on. I think he's gotten really used to having Mommy by his side 24-7, so the separation might be giving him some anxiety. So he's home today, but will be going to school on Friday. His friend Mira is coming to play at our house tomorrow, so I somehow have to find time to clean, as our house is still a pigsty. To say I'm feeling overwhelmed would be a great understatement.
Hope you're all well.
Love,
Amy

Wednesday, February 22, 2006 7:23 PM CST

We're home & really really tired! The house is a total mess, but oh well. We're really glad to be home. Alex has been getting his T3 & Motrin & is doing well. He's happy to be home & was really happy to see Cookie. I can't wait to sleep in my own bed tonight, even if it isn't the greatest mattress in the world! It's OURS! Thank you to all for all that you've done. It means so much to us to know that you all care. We love hearing from you. Please continue to keep Alex in your thoughts & prayers for a continuing speedy recovery!! Have a great night!

Love,
Amy

Wednesday, February 22, 2006 1:52 PM CST

We're going home! Just waiting for Jorge to get back up after taking the first load of stuff out to the car. YIPPEE!!! Alex is very excited & wants to watch a dino movie when we get home--go figure!!!!

:)

Love,
Amy

Wednesday, February 22, 2006 10:36 AM CST

Alex had a great night last night! He now hasn't had morphine for 24 hours! YEAH! He's only on the T3 & Motrin now. By the looks of it, he'll be going home today! He's really excited to get home! So area we! Poor Jorge, he slept in Alex's room again last night & got even less sleep than the night before. There is another boy in Alex's room, I would guess a 12 year old, an he has a big IV pump & things that take up quite a bit of space. So Jorge wasn't able to pull out his sleeper chair last night & then there were other things in the way so he couldn't even extend his legs. Poor guy!! He's gone home now to take a nap. Alex, on the other hand, slept great. They woke him at 1am & 5am for his T3, but he went right back to sleep. We'll keep him on T3 every 4 hours the first couple of days home, then start spacing the time out to every 6 hours, then 8, then eventually just being on Motrin. He hates the cherry flavor of the T3, so they're going to check & see if he can get it bubblegum flavor to take home. Otherwise, we might just have them write the prescription, instead of filling it here, and take it to Walgreen's, because I know they can make it other flavors. Anytime he has to take any cherry flavored meds, he rubs his ears & says it's spicy! He's a cheery little guy this morning! We're getting ready to go on a wagon ride, but he wanted to finish watching The Doodlebops first. So, now it's just waiting for the discharge orders from Dr. Lam, the Rx's, etc. & then we'll get home. I'm sure it won't be until this afternoon, because things never move quickly in a hospital! I need to ask Dr. Lam some questions too, like when he can have a real bath; activity restrictions; walking restrictions; when he can go back to school...
I'll try & update once more before we leave. Otherwise it might be a while, because I'm never as good at updating when we're at home! Thanks again to everyone for all of your thoughts & prayers!! Please keep them coming for a continuing speedy recovery!!
Love,
Amy

Wednesday, February 22, 2006 10:36 AM CST

Alex had a great night last night! He now hasn't had morphine for 24 hours! YEAH! He's only on the T3 & Motrin now. By the looks of it, he'll be going home today! He's really excited to get home! So area we! Poor Jorge, he slept in Alex's room again last night & got even less sleep than the night before. There is another boy in Alex's room, I would guess a 12 year old, an he has a big IV pump & things that take up quite a bit of space. So Jorge wasn't able to pull out his sleeper chair last night & then there were other things in the way so he couldn't even extend his legs. Poor guy!! He's gone home now to take a nap. Alex, on the other hand, slept great. They woke him at 1am & 5am for his T3, but he went right back to sleep. We'll keep him on T3 every 4 hours the first couple of days home, then start spacing the time out to every 6 hours, then 8, then eventually just being on Motrin. He hates the cherry flavor of the T3, so they're going to check & see if he can get it bubblegum flavor to take home. Otherwise, we might just have them write the prescription, instead of filling it here, and take it to Walgreen's, because I know they can make it other flavors. Anytime he has to take any cherry flavored meds, he rubs his ears & says it's spicy! He's a cheery little guy this morning! We're getting ready to go on a wagon ride, but he wanted to finish watching The Doodlebops first. So, now it's just waiting for the discharge orders from Dr. Lam, the Rx's, etc. & then we'll get home. I'm sure it won't be until this afternoon, because things never move quickly in a hospital! I need to ask Dr. Lam some questions too, like when he can have a real bath; activity restrictions; walking restrictions; when he can go back to school...
I'll try & update once more before we leave. Otherwise it might be a while, because I'm never as good at updating when we're at home! Thanks again to everyone for all of your thoughts & prayers!! Please keep them coming for a continuing speedy recovery!!
Love,
Amy

Wednesday, February 22, 2006 10:36 AM CST

Alex had a great night last night! He now hasn't had morphine for 24 hours! YEAH! He's only on the T3 & Motrin now. By the looks of it, he'll be going home today! He's really excited to get home! So area we! Poor Jorge, he slept in Alex's room again last night & got even less sleep than the night before. There is another boy in Alex's room, I would guess a 12 year old, an he has a big IV pump & things that take up quite a bit of space. So Jorge wasn't able to pull out his sleeper chair last night & then there were other things in the way so he couldn't even extend his legs. Poor guy!! He's gone home now to take a nap. Alex, on the other hand, slept great. They woke him at 1am & 5am for his T3, but he went right back to sleep. We'll keep him on T3 every 4 hours the first couple of days home, then start spacing the time out to every 6 hours, then 8, then eventually just being on Motrin. He hates the cherry flavor of the T3, so they're going to check & see if he can get it bubblegum flavor to take home. Otherwise, we might just have them write the prescription, instead of filling it here, and take it to Walgreen's, because I know they can make it other flavors. Anytime he has to take any cherry flavored meds, he rubs his ears & says it's spicy! He's a cheery little guy this morning! We're getting ready to go on a wagon ride, but he wanted to finish watching The Doodlebops first. So, now it's just waiting for the discharge orders from Dr. Lam, the Rx's, etc. & then we'll get home. I'm sure it won't be until this afternoon, because things never move quickly in a hospital! I need to ask Dr. Lam some questions too, like when he can have a real bath; activity restrictions; walking restrictions; when he can go back to school...
I'll try & update once more before we leave. Otherwise it might be a while, because I'm never as good at updating when we're at home! Thanks again to everyone for all of your thoughts & prayers!! Please keep them coming for a continuing speedy recovery!!
Love,
Amy

Tuesday, February 21, 2006 4:04 PM CST

Alex has had a good day! He has only needed a couple of doses of morphine. The rest has just been T3 & Motrin. He also got some Miralax to help him have a BM, and some simethicone to help with the gas in his tummy. We've been having a nice relaxing day, watching movies & playing with dinosaurs. Jorge is in his room right now playing dinos with him. The doctors & nurses want Alex to drink more, so we've been trying to "force" the water & apple juice on him, and he's starting to get perturbed at us! We're so glad that he's having a better day than yesterday. I keep thinking though that Alex is going to have to go through this all over again before too long for his scoliosis--probably in May--and I dread it. But I just have to put that in the back of my mind & focus on the here & now. At least we won't have to travel to Boston now for that operation. I think that would be even harder. We're just so thankful that he's such a strong, healthy little boy! We are truly blessed!
Love,
Amy
p.s. new pics to check out!

Tuesday, February 21, 2006 11:24 AM CST

Alex had a good night. Jorge slept in the room with him & said Alex went back to sleep pretty quickly after they woke Alex to give him some meds. Alex is still needing the T3 & morphine, so they think maybe he'll go home tomorrow. They want to really make sure that his pain is managed before sending him home. He cannot go home on morphine. They are going to try tapering him off the morphine today & giving the T3 more often to see if that will work. We'll see. Jorge went home to shower, feed Cookie (our cat) & check in with work & will be coming back, probably pretty soon here. Alex & I watched "The Land Before Time" this morning, then went out on a wagon ride. We found some dinosaurs to play with (as if he didn't have enough!) and went to the Children's Library & picked out some dinosaur (of course) books to check out to his room. Now he's with me to quickly update this & he just asked me if I was almost done, so I'm going to sign off. He is now in Unit 5B on the 5th floor for those of you who may not have caught the update from late last night. His room Tel. # is 612-273-0345. Would love to hear from you!
Take care,
Love,
Amy

Monday, February 20, 2006 8:55 PM CST

Ok, finally an update. Alex was finally moved to Unit 5B on the 5th floor today around 5pm. He's now on Unit 5B, Room 35 & his phone # is 612-273-0345. He was having a lot of pain again at that point, so it took us until about 7pm to finally get him settled. If we don't stay ahead of the pain with medication, it really gets him badly, and he just constantly writhes in pain. It's so incredibly difficult to watch & not be able to really do anything. We try rubbing his back, etc. but it only helps for a few seconds, then he's writhing again. It just takes so long for the medications to really kick in. That's why it's so important to stay ahead of the pain. Unfortunately we didn't that time, as we were busy playing in one of the playrooms & Alex didn't want to leave. We've explained to him now, and think he gets the fact that we'd just leave for a few minutes, just to get the medicine, then go right back to playing wherever he was playing. He gets morphine every 2 hours, Tylenol with Codeine every 4 hours, and Motrin every 8 hours. Dr. Lam, his neurosurg. that did the surgery on Fri., stopped by this afternoon to check on Alex & said Alex might even be able to be discharged tomorrow. We're not sure how we feel about this. We want him home of course, but we really want to make sure that his pain is REALLY managed. We certainly don't want a little boy coming home & being in constant pain. Alex's "girlfriend" Mira stopped by tonight for a visit with her Mom Jen. Alex loved seeing them. I got some really cute pics of them together, but I haven't yet figured out how to upload pics with the computer here in Unit 5B, as it's different from the one in the PICU. I'll try & get them on tomorrow. Alex has a room to himself currently & we hope it stays that way so that he can get a really good nights sleep tonight. I think Jorge is planning on staying here all night tonight as well, so it'll be a family affair. Sorry for the really late notice on Alex's move, but between trying to get his pain under control, trying to get him to eat, eating something ourselves & then hanging out with Jen & Mira, it just got late. Thanks again for all the thoughts & prayers. Please keep them coming.
Love,
a very tired Amy

Monday, February 20, 2006 1:54 PM CST

Alex is still in the PICU. There are currently no available beds in either of the regular units, so for the moment, we're stuck. Alex has also had quite a bit of pain today. It's finally a little bit better as of right now. He seems to be having shooting pains going through his back, most like from both the incision & the nerve endings. They game him his T3 this morning & that did nothing for it. They then gave him some Motrin on top of that & that didn't help either, so then they tried some of the oral morphine (that we'd discontinued early, but out of desperation I asked them to try again) and that did nothing as well. I tried to take him on a wagon ride to get his mind off of things, but he was in too much pain to even sit in the wagon. So I held him in my lap from 10:45 until 1:15 when Jorge finally arrived. He decided not to go in to work today & come to the hospital instead, so I was very thankful when he finally arrived. He brought Alex's pillow from home, as well as this AMAZING dinosaur (of course) blanket that the aide on his school bus made for him. THANKS DOLLY!!! So I think he's really happy to have those here. About 20 min. before Jorge arrived they gave Alex some more T3, which seemed to work a little better this time, because of course as soon as Jorge arrived, Alex was much livelier & actually let Jorge put him on the bed where he proceeded to bounce around. Of course. And Jorge says to me "It doesn't see like he's in pain to me!". Oooooh. I wanted to ring his neck! :) But finally with him there I was able to get up & go to the bathroom & go get some lunch. And now I'm updating this. Hopefully a bed will clear out at some point today on a reg. ward. Otherwise he'll be spending another night in the PICU. So for right now, he's still on Unit 5C, PICU, room 17, with a phone # of 612-273-0721. Hope you're all having a good day. Keep those thoughts & prayers coming. And don't forget to sign the guest book, even if you've signed it before! We love to hear from you!

love,
Amy
p.s. If you haven't checked in for a while, click on "read journal history" to catch up on Alex's progress!

Monday, February 20, 2006 10:32 AM CST

Good Morning!
Alex's night went ok. He went to bed around 9:30. Then they came & woke him about 1am to give him a dose of medicine. They had to wake him because he no longer has an IV in & has to take all medications orally. The little boy in the room with him has a very strange, eerie cry/wail when he's upset & that woke Alex around 3am and scared him to death. The nurse came to the parents' lounge & woke me and I stayed with him until about 4:45 when he finally went to sleep again. When I came into his room this morning at about 8:30 (I slept a little later than usual! Must have been that 3am wakening!) he was sleeping, though the nurse told me he'd actually woken up around 6:45 asking for his breakfast. She said he'd just recently gone back to sleep again, which is good. He needed more sleep. He woke again a little after 9 & ate a big breakfast of scrambled eggs, pancake & donut w/2 apple juice boxes! Last night after I updated this, he went on to eat a ham, turkey & cheese sandwich! He was a hungry fellow! I would be too if I hadn't eaten since Thursday dinner! During rounds this morning they said he'll be moved to one of the regular units here on 5th floor. They have to wait for some kids to be discharged first, so it might take a while. But as soon as there's space, he'll move over. We had them take Alex off of the morphine & switch to Tylenol w/Codeine (T3). The morphine was making Alex really really fidgety. They were supposed to take him off last night, but somehow that got missed, so at 3am when he woke up the nurse gave him some morphine, which made it really hard for him to fall back asleep. They just gave him some T3 about an hour ago. Alex went peepee "all by himself" this morning after I got in there. When I say all by himself, I mean that I carried him in to the bathroom & put him on the toilet, but he sat there on his own & pointed things downward himself and wiped himself, so that's a big step! He also walked for the first time since surgery, from the bathroom to his bed & did really well! He now has all of his leads & other wires off. They only do blood pressure every 1.5 hours, so that's great! A lot more mobility in bed w/out getting all tangled up! Anyway, now we're just in the waiting game of moving to another unit/room. I'll keep you posted once I know what unit & room and the tel. #. Thanks again for all of your thoughts & prayers! Please keep them coming! Sign the guestbook if you'd like. We love to hear from family & friends!!
Take care,
Love,
Amy

Sunday, February 19, 2006 7:00 PM CST

Alex is doing really well. He still has a lot of pain, but they are giving him morphine for that. He's really good about letting us know when it's starting to hurt again. We want to stay ahead of the pain instead of letting it catch up to him. He's very independant! The morphine he takes by mouth & once his nurse, Maggie--who is AWESOME! We've had her the entire time he's been here so far. She works from 7am-7pm on weekends---anyway, once Maggie gets the morphine into the syringe, Alex HAS to do it by himself. If you even reach for the syringe, he shoots you a look like "don't even think about it"! He has gotten up a couple of times to go peepee. He can't walk on his own, so we carry him VERY GENTLY to the toilet. Then one of us has to hold him up a bit so that he's not sitting directly on the toilet, as that causes him too much pain, even with the morphine. One of us then has to point things downward so it doesn't go everywhere. He's really great about telling us when he has to go. I'm going to really miss having Jorge here tomorrow to help me out! There will be a nurse, though not Maggie anymore, as she's only on weekends. We're hoping that tomorrow he will be moved to a regular unit anyway. Alex has been doing great about eating, too. He's had chicken broth, strawberry jello, lemon jello, chocolate pudding & 3 popsicles! He was given some anti-nausea medicine due to the morphine sometimes making him feel icky in the tummy. Alex has had some visitors today, which has been great! His babysitter Nadine & her Mom Lori came by, and my friend Jill & her husband Tim came by shortly after! Alex really enjoyed seeing everyone! Nadine brought some awesome DINOSAUR (of course) things for Alex, and Jill brought by a whole big box of valentine's & pictures all the kids from our MOMS Club have colored of dinosaurs (of course!). It's all so wonderful, and so thoughtful. Alex really loves it. Hopefully once Alex gets moved to one of the regular units he can hang up some of the great pictures! OK, so that's the scoop on Alex at the moment. I'll update more tomorrow, when I know what the plan is going to be for that day. Thank you to everyone for all of the great thoughts & prayers! Please keep them coming! Take care.
Love,
Amy

Sunday, February 19, 2006 2:13 PM CST

Well, finally an update! Alex is now extubated! This happened around 12:30 & Alex is VERY happy to have the tube out of his throat. He was actually communicating with me all morning by raising his eyebrows for "yes" and moving his head side to side for "no". It really helped in picking out what books & music he wanted! He just received a dose of morphine, as his back was giving him quite a bit of pain. He's also eating a little bit of jello right now & really enjoying that. He will be staying in the PICU overnight, probably being moved to a regular unit sometime tomorrow morning. After he was extubated, the poor little guy just said "Please, let's just go home.". It broke our heart to tell him we couldn't yet. But now that he's a little more settled, he's happier. He's in eating jello & playing with Daddy right now. Hopefully that morphine will help him with the pain. He also received some Tylenol. We've been reading lots of dinosaur books, and some of the more "non-scientific" books that the hospital has in order to give me a break from all of those big words! I am getting ready to go upstairs & finally get some lunch, but I will try & get a new picture later this afternoon of our little guy without his tube on the picture page. He is still in Room 17 of Unit 5C PICU & the phone # is still 612-273-0721. Please keep those thoughts & prayers coming! Thank You!!!!
Love,
Amy

Saturday, February 18, 2006 1:37 PM CST

Hi,
They've decided to keep Alex fully sedated & "paralyzed" until tomorrow morning, at which time they'll extubate him. At least that's the plan right now. They will still flip him onto his back around 4pm today. He's been resting comfortably overall. His blood pressure has been a bit high lately, so they've up'ed his pain dosage. Keep tuned in. I'll keep updating as I know more.
Thank you for all of your thoughts & prayers! Please keep them coming!

Love,
Amy

Alex's tel. # in the PICU is 612-273-0721 *** Please do not call before 9am or after 8pm if calling. Thanks!

Saturday, February 18, 2006 8:47 AM CST

Alex had a good night overall. They still have him paralyzed & sedated. They've actually started him on a drip of the paralytic because he was waking so often (it's a short term paralytic), and the second he stirred his right hand went up & tried to yank out his breathing tube. Alex is notorious for extubating himself (taking his breathing tube out). So they've now tied Alex's arm down to the side of his bed to prevent him from doing this. He is running a temp right now of about 101. They've just given him Tylenol in the last half hour, so hopefully that will go down soon. The doctors have not rounded yet, so I'm not sure what the plan is for today. I don't know if maybe they're going to let Alex move around some today or what. I'll just have to wait & see and I will update this more once I know more. It's very hard to see him like this because, as you all know, he's a very active little guy. But this is definitely the safest thing for him right now. It's hard too because even though he appears to be sleeping, he can actually hear everything that's being said & can feel touch, etc. We've been reading to him & talking to him & touching him. Jorge isn't here yet, but will be shortly. I didn't sleep very well & was up at 5:30, so I went in to check on him. In the PICU parents aren't really allowed to sleep in the room with their child. Once he's moved to a regular room I will be able to. In the meantime I'm sleeping in the family lounge area. I expect Jorge's Dad will be by shortly to see Alex. He is a cardiovascular surgeon here at the U and had some patients of his own to check on & said he'll be stopping by afterwards to see Alex. He actually hung out with us quite a bit yesterday after he finished his surgery, while we waited for Alex's to be finished, and was also in the recovery room quite a bit. It's really nice to have that support. OK, I guess that's about it for now. I will update more later. Thank you again for all of your thoughts and prayers. Please keep checking back for more info.

Love,
Amy

*****Just heard (11am) from neurosurgery. The plan is to keep Alex sedated & on his tummy until 4-5pm today, then extubate him & move him onto his back & onto one of the regular floors, either 5A or 5B.

Friday, February 17, 2006 4:32 PM CST

Hi All,
Alex is out of surgery now and finally resting. The surgery itself went very well, and Dr. Lam believes he got Alex's back closed up nice & tight. Dr. Lam thinks the growth on Alex's back was an epidermoid cyst, which is benign, but they have sent it to be analyzed just to be 100ure. The cyst was actually much bigger than they had thought from the MRI. It was about an inch long and was actually growing into his spinal cord, so it's a very good thing it was taken out now. Alex had very little blood-loss, so no transfusion was needed. During the surgery, there was a team of neurologists there to monitor the signals coming from Alex's nerves with probes to make sure that there was no nerve damage during the operation. Everything went well there & there was no damage. Alex had a very tough time coming out of anesthesia. He is supposed to remain on his tummy, perfectly still for at least 24 hours. Well, when he woke, he was in pain of course, and for those of you who know Alex personally, he does not believe in being still--EVER. He fought and fought lying down & kept saying he "was just trying to wake up". He is so strong, we had to physically hold him down & it took 2 of us to do it. We just didn't think that his pain and everything was being managed well (this was all going on in the recovery ward) so I finally yelled out for help, because Jorge & I were both holding Alex & he still was fighting like crazy. They decided to give him more Versed (sp?) to help make him a little sleepier, plus more morphine. The poor little thing was just crying & crying. Once they finally got him medicated & sleeping, he had a lot of trouble breathing & his SAT's (oxygen saturation levels) were dipping down to 89 We thought he needed to be intubated, but Dr. Lam didn't want to do that due to the damage it can cause to the lungs and throat. Finally though, after 2 rounds of nebulizing & no improvement in his SAT's, they decided they should intubate him and that that would make Alex the most comfortable. They sent Jorge & I out of the recovery room in order to do the intubating, which took forever. They ended up sucking quite a bit of gunk out of Alex's lungs. Alex is now finally up in the PICU (Pediatric Intensive Care Unit) & resting comfortably on his tummy, sound asleep. He will be this way for at least 24 hours. I will be sleeping here at the hospital throughout Alex's stay, which Dr. Lam is still thinking will be about a week. If we're lucky, it will be less. Alex has always been a really fast healer with all of his other surgeries, so hopefully it will be the same thing this time! Thank you to all for your thoughts and prayers! Alex is in room 17 in the PICU, which is Unit 5c. He can have visitors in the PICU, though children are not allowed unless they are siblings. If you'd like to visit Alex, please feel free! If you'd like to call first, you can call the U Info at 612-273-3000 to find out if he's been moved to a regular room, or to be connected by phone to Alex's room. There is a direct tel. # to his room, but I don't know it yet. Thank you all again for your kindness, thoughts & prayers. Please keep them coming for a speedy recovery!!
Love,
Amy *******Alex's room Tel. # in PICU
is 612-273-0721
I will try & get pictures on the photo page soon.

Wednesday, February 15, 2006 9:12 AM CST

Hi All!
Well, Alex will be going in for surgery in just a couple of days now. We are anxious---well, I guess I should say I am, because Jorge is always cool as a cucumber! :) But I'm trying to stay calm & maintain my sanity! Last week was a very bad week for me with nerves & such & even resulted in a couple of really icky anxiety attacks. This week has been much better. I just have to remember to have faith & keep on praying! We pray that this is just a little benign cyst & that his recovery will go very quickly, like it has in the past. Children are remarkable that way! This surgery will just be different, because Alex is so much older. He hasn't had a surgery since he was 2 1/2!! Can you believe it?? A whole 2 years since the last one! As far as the VEPTR surgery goes, we have decided not to travel to Boston for the procedure. We've decided that it is a much better option & would be much less stressful on Alex to have the procedure done here. Dr. Perra (We've gotten over the ego issues. I mean, what surgeon doesn't have a bit of an ego??!) will be doing the procedure, along with a whole team of other doctors. We don't have the exact date yet, but Dr. Perra believes it will be in April some time. The recovery from that surgery will be much longer than the one for the surgery this Friday. Please keep Alex in your thoughts and prayers. They are really working! Alex will be at Fairview University Medical Center for the surgery this Friday & will be in the hospital at least a week. If anyone is interested, the phone # to the hospital is 612-273-3000 if you'd like to check up or find out what room he's in. His VEPTR surgery will be at Gillette Children's Hospital in St. Paul. Hope you all had a nice Valentine's Day. We 3 went to Fuddrucker's, because it's one of Alex's favorites, and he had a blast. I will try & update you on Alex's surgery & recovery at the hospital if I can find a computer to use. I will be staying at the hospital while he's there.

Love,
Amy

Sunday, February 5, 2006 11:21 AM CST

Hi All!
We have a surgery date for Alex. We went to see Dr. Lam (Alex's Neurosurgeon)last week and he determined that the cyst needs to be removed before Alex can proceed with the VEPTR surgery. The surgery will be Friday February 17, less than 2 weeks away. We'll be making this a VERY special Valentine's Day for all 3 of us before that!!!! Dr. Lam believes that the cyst is attached to Alex's spinal cord, though it is not causing repeated tethering of his spinal cord. Dr. Lam is a little concerned over the cyst due to the fact that it's growing--it's about the size of an acorn now--and the more it grows, the more danger there is of it pressing on the spinal cord & causing damage. Dr. Lam will not know the type of cyst it is until he's actually in there doing the surgery. However, he stated that he would be very surprised if it is malignant. Please keep us in your prayers that it isn't & that this will go quickly, safely & smoothly! The surgery will be performed at Fairview University Medical Center (FUMC), where the majority of Alex's other surgeries have been performed. Dr. Lam will do the surgery, and there will also be a neurologist there the entire time to monitor the signals coming from Alex's spinal cord. There is always a danger when working with the spinal cord, one of which is damaging the nerves that control bowel & urinary function. Please pray to guide Dr. Lam's hands during surgery & that there will be no damage to ANYTHING! Alex will be in the hospital a week, maybe a little more. He will be in the Intensive Care Unit the first 2 or so days under full sedation due to the fact that he needs to remain in a perfectly horizontal position to prohibit any pressure on his spinal cord (from the gravity of sitting up & moving around). Adults wouldn't be able to be that still, let alone a very active 4-yr. old! Another risk with this surgery is spinal fluid leakage after Alex is all closed up. If there is any leakage, Alex would need additional surgery. Dr. Lam said that there is a new product out there that has been very successful in preventing leakage when they put it in at closing time (the closing of Alex's back). Please pray that there is no leakage too! I guess just pray for everything! We sure are. As far as Boston goes, I have not heard anything yet about a date. Dr. Emans (the surg. in Boston) just got back into the office Wed. of this past week, so I'm not even sure that he's had time to review Alex's records and images. I'm also not sure exactly how long we will need to wait after the cyst removal to proceed, though it seemed, when I asked Dr. Lam, that it wouldn't need to be that long due to the fact that the VEPTR surgery will be performed in a completely different area of the back. I did email Dr. Emans to let him know of this 2/17 surgery. So I guess as far as Boston is concerned, we'll just have to wait until we hear. I will call Dr. Emans nurse/surgery scheduler tomorrow just to check & see if he's had time to review anything yet. You know me, I can never just sit idle when it comes to Alex's well-being!!
When we were home in Shenandoah last month to visit my parents, the local newspaper, The Valley News, interviewed Alex & I & they ran an article on him last Wed. If you would like to check it out, please go to www.valleynewstoday.com & then in the "search" area type in Alex Molina & it should pull the article up. They really did a good job I think (aside from the fact that in the picture I think I somewhat resemble Jabba the Hut!! YIKES!)
I hope that you are all doing well! We are, despite everything. We're just taking it a day at a time. We'd love to hear from you! Take care!
Love,
Amy

Monday, January 30, 2006 10:54 AM CST

Hi Everyone!
Just wanted to give another quick update.
Alex had his MRI on Fri. 1/20 and it was discovered at that time the development of a cyst in the area of his previous lumbar detethering surgery. The radiologist could not determine the type but mentioned in could be an epidermoid cyst. This is something that Alex has had in the past & he had that one removed surgically. Alex has an appointment tomorrow with his neurosurgeon, Dr. Lam (who did the previous cyst removal as well as Alex spinal cord untethering). If Jorge & I remember correctly, Dr. Lam had said, at the time of the other cyst removal, that another one could occur. The cyst itself is not a serious thing, but it would be something that would need to be surgically removed. We will find out more tomorrow. Dr. Perra, Alex's spinal orthopedic surgeon, wants to have this cyst addressed before continuing with the VEPTR things. Jorge & I don't know about this. We want to wait to see what Dr. Lam says. We are considering finding a different spinal ortho surgeon for Alex for a couple of reasons: 1. Dr. Perra is no longer at the U of MN & instead only at Gillette's in St. Paul which is a much farther drive among other things. 2. It seems to us that sometimes Dr. Perra's ego gets in the way, and when that happens, we believe that it gets in the way of his best medical judgement. Anyway, first things first, and that's the appointment with Dr. Lam tomorrow. As far as Boston goes, I have been in touch with Dr. Emans and his nurse. When I spoke with Lisa the nurse on Thurs. of last week, they were still waiting to see Alex's images. So I contacted the triage nurse at the U of MN associated w/Dr. Perra & requested all of Alex's records be sent directly to Boston & Dr. Emans immediately. We believe Dr. Perra was holding back on sending them. When I checked back this morning with Lisa at the U of MN she informed me that everything had been sent & when I checked the FedEx tracking # she gave me it showed that everything had been delivered this morning. So the next step now as far as Boston is to wait to hear back from them. On Thurs. Lisa in Boston said she would be contacting me the end of this week if they received Alex's records. So now it's just a matter of waiting! OK, that's pretty much it on the medical front at the moment. Please keep checking back, as I will update as soon as I know more. Hope you're all well! Keep on writing! We love to hear from you!
Love,
Amy

Wednesday, January 18, 2006 10:27 AM CST

Hi Everyone!
Just a quick little update. Hope everyone had a great Christmas & New Year!!
We found out last Monday at Alex's 6 mos. checkup with Dr. Perra for his scoliosis that Alex curve had worsened by more than 10 degrees. In July Alex's curve, in his back brace, was 47 deg. On Monday it was 61 deg. in his brace, 72 deg. out of his brace. This means that his curve is at a dangerous level. I don't know if everyone knows this (we didn't at the beginning) but scoliosis can actually cause death, as the heart & lungs no longer have room to function as the curve worsens. Therefore, Alex is going to need spinal surgery in the next 2-4 months. There is a fairly new device called a VEPTR--Vertical Expandable Prosthetic Titanium Rib--that Alex is a great candidate for. For lots of GREAT info on the VEPTR, go to www.veptr.com or you can also go to www.google.com and then type in VEPTR to search. Alex has a full spine MRI this Friday so that the surgeons can see exactly what they're dealing with. We will be going to Boston, MA to have the procedure done by Dr. John Emans, one of the, if not THE top orthopedic surgeons in the country specializing in the VEPTR. He specializes in pediatric spinal deformities & is also a professor of orthopedics at Harvard. After the MRI we will start working more on the date of the surgery. Alex will be looking at about a week's hospital time, then we would have to spend more time in Boston before Alex would be able to travel, though I don't yet know how long. Outside of the hospital, Alex will be looking at an approximate 10 week recovery time. We want this surgery done as soon as possible, specifically for Alex's health, but also so he can hopefully have a summer of fun. Alex had enough summers in casts, etc. so that he couldn't do much. Please keep us in your thoughts & prayers. I would also love to hear from you, as we could use all the support we can get at this time. Thank You.
Love,
Amy

Friday, November 18, 2005 10:53 AM CST

Hi! I don't really have time at the moment to give a big update, but here's a short one! And I'll also attach pics!

Alex is doing great! He's got a little cold right now, but no biggie. He's in preschool now & loves it. He goes MWF from 9-11:30 & gets to ride the bus, which he loves! He has the same driver & assistant on the bus as last year, Bill & Dolly, so he loves hangin' w/them on the bus. He also has a little girlfriend at school--Mira. They hold hands & everything. It's really sweet! Mira is SUPER sweet! And cute! If you ask Alex who Mira is, he usually answers "She's this sweet little girl at school that I really love!"! Precious!! She lives really close w/her Mom, so we try to get them together often. I figure a girlfriend at this age is OK...he'll be at the stage where he wants nothing to do w/girls soon enough! Although, Alex is quite the ladies man, so I'm not sure he'll ever get to that stage! The girls might not let him! There's another little girl at school, Shaina, that is vying for his attention too! Anyway, he loves school & is always looking forward to the next time he goes.

Alex had his right leg/foot checked out Tues. of this week to see how the growth plate between his tibia & ankle bone was doing. 6 mos. ago, when his cast was removed (after breaking his leg at Easter time), it was discovered in an xray that that growth plate was growing incorrectly & only going half-way across in place on the whole way. But the xray on Tues. showed that nothing has changed & that's a good thing, so Dr. Walker (his leg/foot doc) is going to just monitor it & doesn't even need to see him for a whole year!

Alex has 2 teeth coming in funky. One is coming in thru the roof of his mouth & the other is coming in where he has the microform cleft in his gums, but it's coming in perpendicular to the other teeth, so it's making a sort-of "T" shape. These are things that will need extracted, but again, no biggie. They don't cause him any pain at all. He'll probably have them removed some time at the beginning of the year under sedation.

We all went to Disney World last month for a week & had a blast! I'll attach a pic or 2 of that. Jorge had a conference down there so Alex & I came along. We went 3 days early so that Jorge could go to the parks w/us before his conference started & then my parents flew down from Iowa during the time Jorge was in conferences to help out w/Alex, which was awesome! We had an incredible time & have tons of great memories from the trip! It was unseasonably HOT there, being in the upper 90's every day, but w/a heat index of 100 due to the humidity, but we didn't let that spoil our fun! Alex loved the Dino Land area in the Animal Kingdom park, as he's REALLY into dinosaurs right now. Alex is going to be a little scientist of some kind when he grows up, I think. He loves to get really detailed books/movies about different things from the library & either watch or have me read all about it. We have a ton of really detailed books right now on dinosaurs--not just picture books, but books that go into every detail of the dinosaur. And his current favorite video from the library is all about skeletons & the different types different animals/people have. Other things he's really gotten into are tornadoes, hurricanes, ticks & other parasitic insects (YUCK!), sharks... It's actually really cool, because I learn a lot too!! He says he wants to be a doctor, which wouldn't be surprising after all the contact he's had with them! At his appt. w/Dr. Walker the other day he used their tools to check everyone's eyes, ears, noses & throats, w/appropriate comments afterwards like "hmmmm....I see a lot of wax in there" or "hmmm...lots of boogers"! Dr. Walker was very impressed! Not to worry though that he's too science minded--Alex still loves to watch his cartoons & stuff. Current faves? A British cartoon called "Charlie & Lola", Wallace & Gromit (the short movies, especially "The Wrong Trousers"), Stanley & the DoodleBops, the last of which is EXCRUCIATING for me to watch!!! The others I really like! Alex also loves just playing w/his multitudes of toy dinosaurs, and being the true boy that he is, everything has to get pummeled & killed! When I ask him why everything has to die or get killed he tells me "It's just pretend Mom!". Whew! As long as we have that straight!! He also still loves playing with all of his trucks, especially construction trucks!

Speaking of construction, the addition on our house is still going on, though at a very slow rate. Jorge is doing it all himself, so it's hard for him to find the time w/his regular job & the cold weather now upon us!! But it's coming along, just at a snail's pace.

We had a great Halloween this year! Alex was a big fuzzy bumblebee! Our weather was really quite mild, so we didn't even have to add layers over our costumes. I had this funny self-inflating costume that was a witch riding on a ghost. It was really funny, but REALLY hard to walk in! Jorge didn't get dressed up this year. This was our first year of trick-or-treating outside in our neighborhood, so it was really nice! I have some fun pics, but don't have them uploaded onto the computer yet, so maybe I'll put them on this webpage in the next weeks, along with pics of Alex & his little friend Mira! Speaking of Halloween-y things...while at Disney World we were able to go to Mickey's Not-So-Scary Halloween Party in the Magic Kingdom, which was a lot of fun! A lot of people were dressed up & the kids got to
go trick-or-treating all throughout the Magic Kingdom. Loads of fun! And they also had a special parade where all of the characters were dressed in costume! Alex loved meeting all of the characters throughout Disney World! We got him an autograph book so that he could get all of the characters "autographs" too! The fireworks were amazing too!

We leave tomorrow (Sat. 11/19) to go to Shenandoah, IA to my parents for Thanksgiving, which Alex is really excited about! Jorge is actually going to drive us down to Ames, IA to meet Mom & Dad, where we'll eat lunch & then Alex & I will hop into my parents car & Jorge will come back up here until Wed. when he'll drive back down to stay for the holidays. Jorge's birthday actually falls on Thanksgiving this year, so it'll be an extra special bday! We're going out as a family tonight to celebrate!

I have been busy working on my Christmas cards that I make every year. I'm just about to the final stage of the 100 cards! Hooray! It's a long process, but I love doing it every year!

Well, I've got laundry to take care of & packing to do, so I'd better run. Hope you're all well! We'd love to hear from you!

Love,

Amy

Saturday, June 11, 2005 12:02 AM CDT

Hi Everyone!
I hope that you're enjoying your spring/summer so far. We've had a really rainy one thus far, and it's made it hard to get things done on our house. But we're proceeding slowly.
We've been busy trying to enjoy the nice sunny days, and busy trying to stay sane on the many rainy days. Alex's last day of school was June 2 and they had a nice day & were able to go outside & enjoy their snack which Alex really liked!
On April 30 Alex & I did the Animal Humane Society's Walk for Animals & had a really nice time. Jorge was busy w/the house. Alex's favorites were the kitties. He likes dogs, but when there are tons of them around him in all different sizes, it makes him a bit nervous. But he still liked it & we had fairly good weather--cool, but at least not raining for once.
On May 8th Alex & I took a class at one of the local nature centers called "Life Under a Log", where we learned about & searched for all kinds of critters that live under & in logs. We saw lots of bugs & Alex's favorite was the Wooly Bear Catepillar that he found & got to touch.
Alex finally got his cast off on May 17th! Yeah!! But at the same time his doctor (Dr. Walker) discovered that Alex's bones on his right leg aren't growing correctly. The growth plate between his tibia & ankle only goes across half way as opposed to the whole way across that it should. The bone then under that growth plate also only goes half way across. This is something that Alex will need surgery on, but Dr. Walker isn't sure exactly what yet. He wants to do an MRI in 6 mos. (from that appt. date) to better view what's going on & then make a decision from there. It's a real bummer, but I guess there's not much we can do about it. We were just hoping that all of this leg stuff was over & done with.
On May 22 Alex & I did another nature center class--this one called "Incredible Insects" which we both really enjoyed as well!
As I mentioned before, Alex's last day of school was June 2nd & on the 3rd he & I headed down to Shenandoah to visit my parents, Grammy & PopPop to Alex. We had a really nice time & Alex ALWAYS loves visiting them. We had originally planned on being there for about 2 weeks, but we were only able to be there for a few days, arriving on Friday & having to leave on Tues. On Monday we went w/Grammy to the Henry Doorly Zoo in Omaha (PopPop had to work) and that was a lot of fun! HOT!!! In the mid-90's!! The reason we were only able to stay a few days was, in April Jorge & I found out we were pregnant again and on June 2 I had my first ultrasound, at 7 wks. Unfortunately it was abnormal & my doctor, Dr. Immerman wanted to see me back the next Wed., 6/8 for another ultrasound. We hadn't told Alex this time that we were expecting as we wanted to wait until we were positive everything was going to be ok until we did. Jorge went with me to the appointment on 6/8 and unfortunately it was more bad news. I had miscarried again. The next day 6/9 I had to have another D & C. This has all been very hard for me, and heartbreaking. It's hard for Jorge too, but he doesn't have that emotional tie-in that I do. I think the hard thing for him is to have to see me go through it. I've been very down, but have upped my antidepressant dosage to hopefully keep the post-partum depression away this time. I am thankful that Alex didn't know, as that made it even harder the last time. Now he just thinks that Mommy is "sick". They will be doing another chromosome test on this baby as well as a pathology report. Dr. Immerman suspects that this maybe was a "molar" (don't know if I spelled that right) pregnancy, but won't know until the pathology report & chromosome tests come back. Please keep us in your thoughts and prayers during this difficult time.
Alex will be starting swimming lessons at Foss Swimming School next week for 11 weeks and I'm/he's really excited about it! Hopefully he will stay excited about it once he realizes that I won't be going in the pool with him! :{ But there are only 3 kids in the class & they are super nice & patient at Foss, so I think this will go really well. He also starts a class called Musical Make-Believe at MacPhail Center for the Arts this week. It's an exploration of music through dance, playing & all kinds of things & it will also be introducing all of the different groups of musical instruments. I think it's going to be lots of fun & I am in that class w/him. It runs for 9 weeks I think. Then the next week he'll start a class at JW Tumbles which focuses on all kinds of movement, all done to music & ALL completely NON-COMPETITIVE!!! I think that class is 10 weeks. It's going to be a fun & busy summer for Alex & me!!
I hope you're all doing well.
Love,
Amy, Jorge & Alex
p.s. there are new pics too

Thursday, April 7, 2005 10:37 AM CDT

Well, to say that I have not been diligent about updating Alex's website would truly be the understatement of the year, perhaps the decade. But here I am, and I've got my typing fingers on! I hope that the past 8 months have found you all well, and that you all had a great Halloween, Thanksgiving, New Year's, Valentine's Day, St. Patrick's Day and Easter!!! :) We've had months of up's and down's, joy's and sorrow's. I will do my best now to catch you up to speed!!!
Let's see...the last time I updated this was August '04, so I'll get out my old planner & see what we were doing back then as there's no way my memory could POSSIBLY assist me at this point without help!
On Sept. 4 we celebrated Alex's 3rd (can you believe it?!?!?!!) birthday (actual bday 9/9) with a nice big party at Jorge's parent's house (Weeta & Papa) with family & friends. My parents (Grammy & PopPop) and my brother & his family (Uncle Brian, Aunt Christy, cousins Brielle & Avery) were all able to make the long drive up here to help us celebrate. We had a beautiful day for his party and were very fortunate to be able to celebrate with so many wonderful friend's & family. Alex's theme again for his 3rd bday was bugs, but also Bob the Builder! Alex has continually loved bugs from day 1 and his "theme" every year for his bday has been bugs. He just loves them & has a huge variety of stuffed "animal" bugs, with his favorite being a bright green beetle named Beetie that goes with him everywhere!
Alex also started preschool that same week. He is lucky enough to have the same teacher, Julie, that he had last year. She is a joy and such a wonderful teacher. Alex just loves her! He is in preschool with his friend Noah again this year as well and they love playing together.

We had been in talks with a builder since April about adding an addition to the back of our house & in September we FINALLY got some plans from the builder. We also officially fired the builder as soon as we got the plans. He had been sort of a nightmare during all of those months, returning our calls, going AWOL for nearly 2 months, and then not getting plans to us for 5 months! There was no way that we wanted to deal with that once construction started! So after we got the plans, we decided that Jorge would do the addition himself, with the help of friends.

I am still involved in MOMS Club and during these months had many wonderful outings with other MOMS & their kids, as well as just the Moms! Alex & I have made many wonderful friends within MOMS Club! It's such a wonderful outlet for both of us.
In October we got out & enjoyed the beautiful fall weather doing a variety of fun things. Alex & I went to the University of MN Landscape Arboretum for their wonderful fall festival while Jorge went with friends to a friends cabin. They had a wonderful 4-piece band playing there called the Hot Club of France that played all Django Reinhart & Stephan Grappelli music--jazz from the 20's. I used to play that music to Alex when he was first born & in the NICU, so it was a wonderful surprise to hear it there. Alex & I danced & danced until we were ready to collapse! We also went, as a family, to the Minnetonka Orchards apple orchard for some good old-fashioned fall fun. We picked apples, went on a hayride, went through a cornfield maze, pet the animals at the petting "zoo", picked punkins. I love doing those kind of things, and I love the fall colors. I took tons of pictures and we all had a blast! I wish we had a scanner here so I could scan some of the pics. They are just beautiful! Alex and I also spent lots of time outside in our yard playing in the leaves. We have mature maples in our yard that are absolutely gorgeous in the fall! Thank goodness for self-timers on cameras! I got some great pics of Alex & I playing in & throwing leaves!
At the end of October Alex got a new back brace, and then we all hopped in the car & headed to Green Bay, WI to visit our friend's Jeff & Bridget O'Connor for Halloween weekend. We had GORGEOUS weather and had such a wonderful time visiting Jeff & Bridget. It was our first visit to them since they moved there 2 years prior. It was high time! The night before Halloween we all went to a park nearby their house to a Legend of Sleepy Hollow celebration, where they had all kinds of fun things to do. Alex "dunked" for apples--well, actually he just reached his hand in & grabbed one!, played a ring toss & beanbag toss, we went to a shadow reading of The Headless Horseman, there were actors portraying the characters roaming the "grounds", bonfires, all sorts of wonderful things. Alex wore his Mickey Mouse costume & we all had a great time! Afterwards we all went to Lambeau Stadium for dinner at their restaurant. Alex wore his costume there too & loved it! On Halloween, Alex was Mickey, of course, and I dressed up again as Minnie Mouse. Alex, Jorge, Jeff & I went out trick-or-treating together & Bridget, who was pregnant, stayed home to dole out the candy to the little ones! This was Alex's first time actually trick-or-treating door-to-door, and once he got the hang of it, he loved it! We had an incredible visit & can't wait to do it again! Bridget has since given birth (2/17) and she & Jeff are now the very proud parents of a darling little boy named Patrick Wallace O'Connor! We can't wait to meet him, as we've only seen pictures of him!
When we returned home I started a Boot Camp program at our Lifetime fitness gym. The program was an intensive group fitness program with 30 members, and I went every day M-F from 6am-7am for a VERY rigorous workout!! I continued this program--not missing a day I'd like to add!!--for 2 months, until I found out I was pregnant at the beginning of December, at which time I had to quit as my heart rate would get too high doing the workouts.


In mid-November I officially became a self-employed business woman!!! I became an Independant Consultant for Close to My Heart, a scrapbooking supply company! Our products are INCREDIBLE and I am very proud to be selling them. If any of you are interested in checking out our products, please don't hesitate in calling or emailing me at 952-935-3166 or scrapwithamy@yahoo.com. You can also learn more about Close to My Heart at www.closetomyheart.com. I have been having a lot of fun being an independant businesswoman and LOVE not having a boss!!! I'd love to hear from you if you're interested in learning more!

November also brought Jorge's 34th bday (11/24). I threw a mini surprise bday party for him at this great German restaurant in Minneapolis called Gasthof zur Gemutlichkeit with some friends, and we had a great time! Thanksgiving was spent with Jorge's family at his parents house. We had great food, great conversation & great company! What more could you ask for?

The end of November brought an appointment with Alex's geneticist, Dr. Mendohlsen, for the results of his genetic testing he'd had done months prior. When Alex was first born, the diagnosis they had come up with was Amniotic Banding Syndrome. That diagnosis changed on 11/30/04 to a very rare syndrome called Multiple Pterygium Syndrome. The chromosome testing, as in the past, showed no abnormalities. It is, as I said, very rare and it is what is deemed a "webbing syndrome". This would explain all of the webbing that Alex had when he was first born, as well as many of his other anomolies, which the original diagnosis of Amniotic Banding did not. The good news, and for any of you who have ever met Alex already know, there is absolutely no worry for him as far as cognitive problems go. It is nice to have a diagnosis finally. The bad news of this diagnosis is that there is no way to test Alex to find out the reason why he has this syndrome. It could be that Jorge & I both carry a gene that when they get together cause this syndrome, or it could be a fluke. For this reason, the chance of any future children having the same syndrome is anywhere from 155 I would have multiple ultrasounds throughout pregnancy to watch for any problems.

This brings us to the beginning of December. As I mentioned before, Jorge & I found out we were pregnant at the beginning of Dec. We were extremely thrilled and Alex was absolutely beside himself with joy at the thought of being a big brother to a baby brother or sister. He was constantly telling me all of the things he was going to teach him/her, such as how to play with bugs and use a chainsaw! I had my first ultrasound at 10 weeks and everything was looking great. Unfortunately, on Feb. 7 when I went in for my routine 14-wk. check-up to be measured, no heartbeat could be found. When the doctor did an ultrasound to see if he was just having trouble with the doppler, it was confirmed that there was no heartbeat. When he measured the baby's size, the baby only measured at 12 weeks, so the miscarriage had actually happened about 2 weeks prior. I was devastated, as I had had no signs whatsoever of a miscarriage. Alex was with me at the time, which made it even harder because I had to explain to him why Mommy was so sad, and where the baby had gone. My dear dear cat, Farley, had died very suddenly from a cancer that we never knew he had just one week prior to my finding out about the miscarriage, and I had thought that was devastating. He died within 24-hours of being sick. The miscarriage was so far beyond that that there are just no words to truly describe it. But in Alex's mind, the Baby and Farley are in Heaven, playing together, and he's happy with that explanation. And so am I. I called Jorge from the doctor's office and he came immediately from work and also took the next couple of days off to be with me and help me. It is truly the hardest thing I have ever gone through. It is still tough for me now, but you have to get on with your life. You can't let sorrow run your life, for then you are no good to yourself nor those around you. Alex was my saving grace when the sorrow consumed me. He is just such a dear, sweet and thoughtful little boy, and he helped me tremendously, physically, emotionally and mentally. I thank God for the blessing that is Alex. I don't know if I could have made it through that without him. I had many dear friends offer to take Alex for an afternoon, but I think if they would have, it would have been my downfall. Jorge was also very supportive, but Alex was the one that was there for me all the time while Jorge was at work, so his support had more impact on me. And Alex didn't have that emotional quotient to bring him down. For him, the loss of the baby was simply fact and once he had an explanation as to where the baby went, he could go on with being happy and playing, and that's what kept me going--just watching him being able to take joy in life and gave me hope that someday I would be able to do that again as well. About one month after the miscarriage, post-partum depression hit me. Thankfully this time, both Jorge and I were very in-tune to what to watch for and since I was already on anti-depressants, I just upped the dosage. I am so thankful for the medication, and wish there were not such a stigma attached to it. I am not ashamed to be on it, but I know that some people are and that is why they don't get that kind of help that they truly need. Anyway, the miscarriage has been very hard on us, Jorge included. We just pray and love one another, and take life one day at a time.

December also brought Christmas time of course. Jorge drove Alex and me down to Ames, IA on Dec. 18, where my parents met us. We then put the car seat in their car, drove to Shen. and Jorge turned back around and drove back up to MN to make it in time for his parent's annual Xmas party that night! What a trooper!! Jorge drove BACK down on 12/24 to join us for Christmas and then we all drove back to MN on 12/27. We had a great time visiting Grammy and PopPop! Alex loves spending time with them and at their house. Since it's such a long drive, I like to go down early to really make it worth the while! While we were down there I had a mini-scrapbook party at my parent's with a few friends and made some sales! Gotta be the business woman! It was my first official "gathering" that I did, so it was great to do it just in front of friends, so that when I goofed up I could just laugh or make a silly comment & they'd laugh with me. Gina, Angela, Wendy & Julie were all there to support me! THANKS YOU GUYS!!! Brian & his family also came down on 12/24 & we all had a blast together! Alex loved playing with his cousins (once he got used to their rambunctiousness!) and we all loved seeing them play together. We were all very blessed with wonderful gifts, food and family, with family being the best part. Christmas is truly a special time of year!

New Year's Eve was very uneventful this year (as it usually is every year!) and I can't really remember much of it. I think I MAY have actually gotten to watch the ball drop? New Year's Day was spent at Jorge's parent's with his family having their annual traditional meal of lobster, shrimp, scallops & corn. We had a great time & Alex really enjoyed the lobster & shrimp! January also brought a baby shower for our friend Jen, which I hosted along w/friends Cindy & Ann. We had a great time planning it! We had a tea-party theme, as Jen was having a girl. I made the invitations and was also in charge of the menu (seeing as though I LOVE food!!!). We just had a blast doing the whole thing!
In January Jorge and I also took Alex to see Sesame Street Live at the Target Ctr. in Mpls. Once Alex "woke up" (he stopped--much to my chagrin!--napping the minute he turned 3, but if you happen to have him in the car around 3:00, he's out like a light. That's what happened on the way to Sesame Street Live, so he'd had a whole 10 min. of nap-time & was in a daze!) he really enjoyed himself, and Jorge and I enjoyed watching him have fun.

On January 30th my dear, beloved 14-yr. old cat Farley died suddenly. We'd been to dinner at Chuck E. Cheese's & when we got home Farley didn't come out of the bedroom for his dinner. I went & picked him up thinking he was being his usual lazy self, but when I put him down he had a lot of difficulty walking. His hind legs were dragging & he was having trouble with balance. When I brought his food dish to him, he didn't have the strength to stand to eat. I rushed him to the Emergency Vet, as this happened on a Sat. & when they ran tests, all levels of his white & red blood cell counts, as well as many other things, pointed to cancer, and other things pointed to kidney & liver disease. The the vet they suggested he stay there, but when I asked them if he'd be in more comfort there than at home, or if there was some "miracle" thing they could do for him, they replied "NO" to both questions. So I posed the question to them "Why would I want my beloved kitty to die--as it was very apparent that that was what was going to happen, and quickly--in a cold, metal cage surrounded by barking dogs and people he didn't know?". They had no answer for that one. So I picked Farley up, as he could no longer walk at this point, and took him back home. Jorge was very understanding and slept on the couch. I lay Farley in bed next to me & stayed up with him until 4:30am when I finally succumbed to sleep and emotional exhaustion. When I woke again at 7:30am, Farley, who at some point had moved even closer to me, had passed away. It was though he was just waiting for me to finally fall asleep so that he could go. I was very sad, as Farley and I had been through a lot together--I had taken him with me to Germany to live in 1994!--and he was a dear friend that I was going to miss tremendously. Jorge built a beautiful box out of pine that I decorated and we buried Farley, with his favorite things, in the back yard. It all just happened so quickly--less than 24 hours--that I was just in shock. I kept thinking that I saw Farley when I'd come around the corner, or go into the bedroom where he always slept on the bed. I've spoken to other people that have lost a pet, and they had experienced similar things--it wasn't that I was going crazy! You just become so accustomed to seeing something in the same place all the time that your mind sort of plays tricks on you at times. When I spoke to Farley's vet on Monday, she said it was amazing that he had laid on the bed with me and even moved closer, and that that spoke a lot for how comfortable that he felt around me, as animals--even pets--usually find someplace to hide so that they can die alone. Alex got to see Farley before we buried him. Jorge was afraid that he would "ask questions". My thought on that was, "so what?". He did ask questions, and I answered them in the simplest of terms. Death is a part of life and not something to hide. Little did I know that just one week later Alex would get an even bigger lesson in death.

As I mentioned earlier, on 2/7 we found out that I had had a miscarriage. I won't go into detail again on that. I continue to grieve and will for quite some time. It's not something I will ever forget, but it is something that I have to put past me. We will try again, when the time is right. We are waiting for the chromosome test to come back to find out if there was some sort of chromosomal abnormality, though that won't make a difference one way or another as to whether we try again or not. We will try again, it's as simple as that. But I need to know. Jorge doesn't, but I do. Life goes on. I just want to try and have a little closure.

On 2/12 Alex had his first "official" dentist appointment, with the cleaning, xrays--the whole 9 yards! He handled it like the little Hercules that he is. He didn't balk at all at having those xrays taken!! I balk at those xrays!! He did a super job and I was so proud of him! I also took him to see "Pooh's Big Heffalump Movie", which was super cute & he loved it. he loves going to the theater to see movies, and we always make a fun thing out of it by sneaking in our own popcorn, etc.! He doesn't actually know we're sneaking it in and I'm just waiting for him to blow my cover one of these times & for the manager to come over & confiscate our treats & force us to pay $5 for one lousy bag of popcorn!!

Jorge and I decided to keep our Valentine's dinner reservation, even though we'd just been through such a devastating loss. We thought it was important that we get out, just the two of us for some quality time together. So we had our regular sitter, Nadine, come & we went out to a nice restaurant called Tejas & had a nice mellow time together. It wasn't joyous, but it was something we needed. That day, Valentine's Day, was supposed to be my first visit to the Neonatalogist for my first Level 2 ultrasound to make sure the baby was doing alright. I needed something to take my mind off of that. Earlier in the day Alex had an appointment w/his spine orthopedic doc, Dr. Perra to check on his scoliosis, so that was a good distraction as well. It was also good because the xrays showed that his curvature had not worsened since his last visit! YEAH! What HAD changed was that Alex had grown so much since the last brace was made, which had just been on 10/25, that his brace no longer fit! He's now up to a WHOPPING 26 pounds 8 oz.!! So after the visit with Dr. Perra I took Alex to be molded for yet another back brace! The orthotics lady that works with Alex, Carol, was shocked at how much he'd grown! That's a GOOD thing!! Alex chose a butterfly motif for his mold this time, having, apparently, tired of the tie-dye effect one he'd gotten in Oct. This butterfly brace is THE BEST fitting brace, and most comfortable, that he's ever had. We love it! And Alex loves the butterflies (bugs, ya know!)!

Around this time we FINALLY started on the addition of our house. Our friend John did all of the foundation work, along with the help of Jorge & our friend Mac. We now have the foundation, the subfloor and the basement floor is poured as well. It's great to finally be going on this!! Jorge is going to do the whole thing himself, with the help of friends. This will hopefully save us quite a bit of money! Unfortunately, not long after we got started, Jorge rolled his ankle really badly playing soccer and was unable to walk. For 6 weeks he hobbled around hardly able to walk & I FINALLY convinced him (with the help of his parents because, you know if it's just ME saying 'go to the doctor' it's NAGGING, but if others join in, it's not??!!) to go to the doctor & was able, due to a cancellation that had just happened, to get him in the very next day. That was just this week and, an xray and MRI later, it's determined that it was such a bad sprain that he bruised both his tibia and ankle bone on his left leg as well as did ligament and cartilidge damage. Surgery may be a possibility, but that's yet to be determined. The doctor said it didn't matter if it was done now or in a year. So, knowing Jorge, it will be done in a year. In the meantime, he said Jorge could do things but that he needed to take it easy. Hopefully my "nagging" has gotten through to him that maybe he should sit out on the soccer for a while, as getting the house done is a bit more important! Our addition will include moving the kitchen to the back of the house & making it bigger, and it will have a sitting area off of it and will have vaulted ceilings. The other half will be a master bedroom, and then we'll have the full basement addition as well, which we will turn into a rec room where Alex can play & we can relax on the couch & watch movies & entertain. I'm very excited for it to be all done, though I'm also realistic & realize that won't be for quite a while!

Speaking of tibias...my parents (no, they're not the tibias) came up to visit on March 28 and the next morning we went on a walk with Alex & met up with some friends at a nearby park to play. Alex loves the swing & did that forever. Then we decided to try out the slide for the first time this spring, and on our first run down, Alex's shoe (he was sitting between my legs) got caught on the side of the slide. We kept going, his leg didn't. My Dad was at the bottom to pick Alex up and I knew right away that something was wrong, as Alex just wouldn't stop crying, and that's just not like him. We speed-walked back to our house & then Mom went with me to take Alex to the ER at the University Hospital, where it was determined that he had a spiral fracture of his right tibia. The ER doc put a splint on him & the next day I took him to his regular leg/foot ortho doc, Dr. Walker, to have a cast put on Alex. CAN YOU BELIEVE IT?!?!?!!! As if this poor kid needs anything else!! Alex had a follow-up yesterday with Dr. Walker & his leg is healing very nicely. Luckily the bone was not displaced, so it didn't need set or anything. Alex will see Dr. Walker again in 3 more weeks at which time the cast will be removed & more xrays will be taken & then it will be determined if he needs to be back into a cast for 2 more weeks. At least this happened at the beginning of spring, so even if he does have a cast for 6 weeks, that will still just be mid-May. I just didn't want him to have to have yet another summer in a cast!!! Last summer was his first cast-free summer! Alex has a nice red cast (kids can choose colors nowadays) and people have been signing it, which he thinks is fun. He can now walk, hop, jump, climb & even run a little bit on it, even all by himself without holding on to my hand or anything else. It just goes to show again what a little Hercules he is.

I know I skipped a bit from Valentine's till now, but in between then we had lots of fun outings, school, playdates, times with friends and family time. Alex will continue preschool until the end of May, and we are currently trying to figure out which ACTUAL preschool (he's currently kind of in PRE-preschool) Alex will go to in the fall. He will have 2 yrs. of preschool before Kindergarten, which I think is nice. It's nice to be a little older instead of the youngest I think! His physical therapist through the school district will continue to monitor him at whatever preschool we choose, which is nice. We are very fortunate to be in such a wonderful school district and have such great support, all at no cost to us! We are blessed! Alex and I also continue to go to ECFE (Early Childhood & Family Educ.) together on Monday mornings from 9:30-11:30. His preschool is on Tues. & Thurs. from 10-11:30 and he gets to ride the bus to that, which he LOVES! His buddy Noah, who lives around the corner from us, also rides the bus to school & is in the same class as Alex, so they have a great time on the bus & keep the driver, Bill & assistant, Dolly in stitches with their conversations. Noah is also a big Bob the Builder fan, so they talk about that a lot! Another great bit of news is that Alex is now potty trained! He loves going on the toilet & he especially loves getting to wear his Bob the Builder undies!! I've been searching high & low for bug undies, but I've yet to find any in his size (2T/3T) so if any of you find any, send them our way & I'll pay you back!!! HA! HA!!

I apologize again for the great lapse in updates, but hopefully this long one will make up for it for a while at least. There are also new pics, so be sure to check those out!! I hope that the last months have found you all healthy & happy. I would love to hear from you ALL!! Take care of yourselves and GOD BLESS!!!

All our love,
Amy, Jorge & Alex

Thursday, August 5, 2004 1:50 PM CDT

Well, yes, it HAS been forever. Thanks for mentioning it! Let's see...what have we been up to? Let me see if I can recap the highlights for you! I think May was the last time I updated this, so I'll check my planner (my memory is of no use to me anymore!!) & see what I can come up with for you. I will say, first and foremost, that our biggest highlight of course is that Alex is super mobile now!! He rarely walks anywhere--he RUNS! That makes us beyond happy & we thank God every day. OK, let me see....

In May we started talking to a builder, Dan (Alex calls him Dan the Builder, as "Bob the Builder" is his all-time favorite thing right now--everything that happens in life somehow gets referenced to something that happened on a Bob the Builder episode!!), about adding on to our house. He's one of Jorge's sister's best friends, and we trust him. The only problem is, now it's August, we have our loan & have had for a couple of weeks at least now, and we haven't even seen the final drawings. Needless to say (but I'll still say it), it's taking forever & we're getting increasingly frustrated. Anyway, I've already bounced 3 months ahead, so let's get back to May, shall we? I had also been going around w/Alex & our realtor to look at new (to us anyway) houses in our area to see if a move would be more economical, and as you might have guessed, we decided it wasn't. Alex continued his "class" throughout June with his wonderful teacher Julie, whom he adores, as do I. She will be his teacher again this fall, which I'm very happy about. I have joined MOMS Club (Moms Offering Moms Support), which is an international organization & is split up between areas here. Minnetonka for instance has an East & West division. Anyway, we took part in a lot of activities & playgroups with the other Moms & kids in the group. All of the activities include the kids except for once a month we have a Moms Nite Out, which is always a lot of fun. I do those whenever I can! On May 22 we took Alex to see the Ringling Bros. Barnum & Bailey Circus, which he loved. He really liked the elephants of course! At the performance directly after ours (luckily for us) one of the circus performers fell to her death in front of everyone. We were very thankful that we weren't there for that, but very saddened for the woman and her family, all of whom are also performers with that circus, including her children. We also felt very bad for the people that had to witness that & try to explain it to their children.
Now we're into June already!! On June 6 Alex used his potty for the first time!! Of course, he's only used it once more since then, but I still consider it progress!! They say boys aren't mentally ready to be potty trained until they're at least 3, so I'm not pushing it. We read all of the fun little books about it, watch the "Once Upon a Potty" movie a million times & just wait. I'm not in a rush. They say if you force a child into it too early, the higher the chances they'll regress later on, and I certainly don't want to have to deal with potty training twice. So I wait! I'm sure if Alex, later down the road, knows that I wrote this in his journal he'd be mortified. So SHHHHHHH! :) My Mom & Dad came to visit June 12-16, which is always nice. On June 13 Mom, Dad & I went to see "The Magical Mrs. Piggle-Wiggle" at the Minneapolis Children's Theater. Mom had always read those books to me growing up. Alex didn't go with us and stayed home with Daddy because we thought it might be too old for him, as the books are definitely geared towards older kids. But after we went, I wished that he had come with us because, although he may not have gotten all of the "morals to the story" parts, I think he would have really enjoyed it. It was a brilliant performance and very, very funny. Next time I'll know to check w/the theater & ask them if they think a child his age would enjoy it. It truly was brilliant! We also visited the Univ. of MN Landscape Arboretum while Mom & Dad were here. It was actually a MOMS Club outing, but I thought that my parents would really enjoy it, which they did, as did Alex. There was a special exhibit going on then of different treehouses, as designed by architects. Alex really loved climbing in those! He also just loved getting to run around outside. The mosquitoes were as thick as molasses, however, and poor Alex had the welts to prove it afterwards! He REALLY swells up with the bites! The doctor said this is normal in kids, however, as they just haven't built up a tolerance yet to the bites. We were also going to go to a park one evening for a live Celtic performance, but after the previous days' mosquito fest, we decided against it. Jorge, of course, was always working, so he didn't get to do much with us. Alex loved hanging out with Grammy & PopPop though, and they loved seeing him. They hadn't seen him since Jan., when we'd had Christmas down in Shen., so this visit was the first time they'd gotten to see him walk! Needless to say, it was very special.
Througout June, Alex & I had many trips to the MN Zoo as well. We have a family membership, so we go as often as we can. We love going on the weekend the best though, when Jorge can come with us too!

July of course brought the 4th. We debated about taking Alex to the fireworks, and ultimately decided against it, mainly because it happens so late, and Alex goes to bed at 8. But we were also concerned about the loudness of it, as Alex is a bit sensitive to loud noises, just like I was when I was a little girl. So we just spent the afternoon at Jorge's parents house like we do every Sun. We did light sparklers, and Alex thought those were pretty cool! That night Jorge & I had a couple of beers & went out onto our driveway & lit sparklers ourselves. WHOOPPEEE! Not our most exciting 4th ever, but a nice one nonetheless! Alex & I started going to a story time at a bookstore in Minneapolis called "Wild Rumpus". It reminds me of Meg Ryan's little bookstore in "You've Got Mail", except with a lot of animals! They have pet rats, chickens (named Elvis & Priscilla, of course), tarantulas, birds galore, ferrets and seven cats. The cats & chickens run around freely, as do the ferrets at times. The rats you can take out & play with, as I did with Alex. He LOVED that bookstore & we ended up spending 3 hours there the first time we went!! I think Alex goes there (like I do) more for the animals than the storytime! They also have a bunch of trucks & other toys the kids can play with, so it's really a child's paradise! If you're ever up this way, or live here but have never been there, I highly recommend going (unless you have a chicken phobia of course). It's in a great, quaint little neighborhood as well, with nice little cafes, restaurants, coffee shops and shops. Well worth the time to visit!
Alex started swimming lessons mid-July, just for 5 lessons. He wasn't thrilled about them. We actually missed the first 2, so by the time we got to the 3rd, the kids were already going under water & Alex had to do the same, and he HATED that!!!! Poor little guy just cried & cried. The next time he was to have a lesson, he actually begged & cried to go get his hair cut instead of going to swimming lessons. He got a really nice hair cut. We did make it to the final lesson, but there was definitely NO going under water! It's not that Alex doesn't like swimming. I think the suddenly being made to go under water just freaked him out. Jorge also started playing in an intramural soccer league in July, with his games being played just down the street from us. It's been really nice for Jorge, and Alex & I got to go see Daddy play one time too (the games were all at 9pm except for the one we went to) and Alex got to see his Daddy score a goal. It was awesome! I've got a group of friends that I organized for a Girl's Nite Out once a month & I've been having a lot of fun with them. We generally just go out to dinner somewhere & chat the whole night through, though we have done other things as well, such as going to a place that lets us make our own jewelry. But we usually do dinner so that we can just relax & have fun. I really enjoy that & cherish those times w/my friends!
At the end of July Jorge, Alex & I went to see a geneticist, as they wanted to look at Alex & see if they could come up with some type of syndrome that Alex has. We weren't happy about it at all, as I just wanted the doctors to leave Alex alone. He's doing great & I just wanted to leave it at that. But the genetic counselor I spoke with kind of guilted me into making the appointment with the geneticist, saying that if we ever wanted to have another child (which we do) it would be a wise choice, at least that's what SHE'D do. So I kind of felt as though she were insinuating that I'd be a bad mother if I didn't find out everything possible before even dreaming of bringing another child into the world. I talked it over with Jorge & we both agreed that no matter what, it wouldn't change our minds about having another child, so I went ahead & made the appointment. We were originally told, when Alex was born, that he has something called Amniotic Banding Syndrome. Well, the geneticist, Dr. Mendohlssen, says that he doesn't. What she thinks he has is something called Multiple Pterygium Syndrome, though which form she's not sure. It's my understanding, or at least this is what I think I remember her saying, that there are 85 different forms of it. Evidently one of the main symptoms of this syndrome is webbing, which Alex had a lot of when he was born. Truthfully, I haven't even looked it up on the internet. Since my first 20 week ultrasound when I was pregnant with Alex, I have looked up so many things on the internet that he had, or we were told he might have, and I'm tired of getting the wits scared out of me. Of the things you see on those sites, what you always remember are the direst of things. The very worst-case scenarios. I'm tired of worst-case scenarios. I'm happy with our life, and I love Alex more than life itself, no matter what. I don't want to read on those sites something that might have a 1hance of happening down the line, and then live my life in fear of it happening. Dr. Mendohlssen is going to do all of the research and when she's done with it, she'll send us her findings. I'll wait until then. They did take blood from Alex to check his chromosomes again, but the dr. said that the chances of there being something wrong with them is extremely slim, as Alex is far too intelligent to have something wrong chromosomally. We are so very thankful that, cognitively, Alex is just fine, and even advanced in some areas. We thank God for that, and for the way Alex is. He's just such a charming, funny, silly, sweet, charismatic little guy. For those of you who have never met him, I hope that someday you get the chance! As far as this syndrome goes, I understood that there are two categories of it: Recessive, which would mean--to the best of my knowledge--that Jorge & I carry a gene that caused this to happen. If that's the case, there would be a 25hance of it happening with another child, which, in my way of looking at things, means that there is a 75hance of it not happening. The other category is Dominant: meaning it was a total fluke that happened right at the time of conception. I don't think that there is any way of testing to find out where we fit in. Anyway, as I mentioned before, Jorge and I will not let this determine whether we will have another child or not. We will, and we will love that child no matter what. On a lighter note, let's move on to August!...
Well, almost August. My 34th b-day was on July 29 & the three of us hopped in my car that day after Jorge got off work early & headed down to Lee's Summit, MO (suburb of KC)to visit my brother Brian, his wife Christy & their 2 girls Brielle, who will turn 5!!! on Aug. 8 & Avery, who turned 2 in May. We drove down half way & stayed overnight in Ames, IA then headed the rest of the way on Fri. That night we all went to what was Alex's first baseball game, Royals vs. Indians. Alex had a blast at the game & with the girls. We weren't sure how he would handle it, and when, during the first inning, he said he wanted to go BYE-BYE, I thought we were in for a VERY long night. But once he settled in & started watching everything going on around him, he had a GREAT time! We ALL did!! Of course, Alex's favorite parts of the game were 1. when, between innings, some guys would come out with some pads & pull them across the dirt to smooth it out; 2. when the fountains would shoot up high; 3. when we would all yell "CHARGE!!!!" after the music sounded (he'd shoot his arm up in the air & yell it right along with everyone!); 4. anything with music; 5. anything that was being shown up on the "tv", as he called it. Everyone got along great though & the girl's really enjoyed themselves as well. It was Family Night, so peanuts, pop & hotdogs were only a buck each & then at the end of the game there were going to be fireworks. Of course, as luck would have it, the game went into overtime with the Royals, sadly, finally losing by 1 point in the 11th inning. This was at 11pm!!!!! Talk about a long night for kids! But we HAD to wait for the fireworks!! And boy, I'm glad we did!!!! This was the first time Alex saw fireworks, and man, what fireworks they were! I have never seen such an awesome display. Alex LOVED IT!!!! He had his hands over his ears the entire time, but he LOVED it. It was so impressive. Well worth the wait. And amazingly, the kids weren't one bit crabby. Alex was as happy as a little clam & entertaining the people around him with his fancy little dance moves the whole time. We finally got the kids to bed at around 12:45am. YIKES! But they all did great, the little troopers that they are. The next day Christy took me to a place in Lee's Summit called "Girly Girl World", which is a make-your-own-jewelry place. This was my b-day gift from them & I got to make my own bracelet, which I am very proud of & I get compliments on it all the time. I love it. It was an AWESOME gift, and I loved getting to spend a little one-on-one time w/Christy!! I wish we lived closer so we could have more of that! The guys stayed home w/the kids & played w/them while we did our girly girl stuff. It was a lot of fun!! That night we took the kids swimming to the community pool & grilled out. The next day, Sun., we took the Amtrak train from Lee's Summit into KC. Alex LOVED this. He really likes trains. Well, he really likes vehicles of ANY sort, but had lately been asking a lot to ride a train, so this was perfect for him. I got some great pictures of him on the train w/everyone (except me, as I had the camera). If this website allowed me to put more pics on here, I'd put those on. Maybe next time...We met Brian, who had driven the car to meet us, in KC. There we went to an awesome little burger/hot dog joint in Crown Center (?) called Fritz's. It's a train restaurant that was opened first during WWII. All of the wait staff had gone to help w/the war, so the restaurant owners devised a plan so that little trains, yes actual trains, actually deliver your food to your table! It was the coolest thing! There are tracks that run all around the whole restaurant that the trains ride on, and each table has a little track that is attached to it. You order your food at the table with a phone, then about 10-15 minutes later, you hear a whistle. When you look up, you see a train coming hauling a basket of food. When the train gets to the correct table, it lets go of the basket, which then slides down on the track that's attached to your table. It was awesome, and Alex loved it (so did I!)! After lunch we went to the Deanna Rose Farm, which is this cool petting farm. Alex got to go on his first pony ride there & he really liked it! The lady leading the pony told me that the whole time he was riding he kept telling her that he wanted to see the chickens too. One of the pics is of him on his pony, Cowboy. When we got back to their house, we had a quick bite of DQ B-day cake & then Jorge, Alex & I headed out to do the half-way drive home again. This time, however (much to my chagrin) we didn't call ahead to make hotel reservations, Jorge assuring me we'd be fine. Those of you who know me KNOW what a "plad-ahead" kind of person I am, and how much leaving things to chance drives me nuts. Anyway, once we got up to Des Moines at 10pm, not a hotel could be found. The Jr. Olympics were going on & everything was booked. FINALLY we found a dump of a Fairfield by Marriot, spent an atrocious amount on a dumpy room & slept. The next day we came home & now here we are! We had a fantastic time w/Brian & Christy & the girls, and Alex ADORED playing with Brielle and Avery. I've never seen him so engrossed in playing with other kids before. I actually got to sit & talk to everyone without being summoned by him every 2 minutes! :) We all loved it!!
I'm sorry that it's taken me so long to update Alex's website, but I hope you enjoy this update. I hope that you are all doing well. I would really love to hear from you all. It has been far too long! Take care & God Bless!
Much love,
Amy, Jorge & Alex

Tuesday, May 11, 2004 3:07 PM CDT

HAPPY SPRING!!!
I am going to write more in a day or two. Just wanted to let you know that it's coming & that we're here--alive & very well!!!
:)
Love,
Amy

Tuesday, March 2, 2004 1:37 PM CST

Happy March to you all!
I can't believe March is already here!! But I'm not complaining...it means Spring is just around the corner! I hope that you are all doing well and have been enjoying some warmer temps like we have! Yesterday Alex & I went to the MN Zoo & were there from 10:30am until 3:45pm! Even though it was kind of misting outside, we still enjoyed ourselves immensely! We went through the whole thing twice. Alex & I were two tuckered out people by the end! What else have we been up to? Let's see if my Mommy brain can remember!...
Well, we've still been enjoying Alex's two classes during the week. His teacher & PT actually came to our house this morning for Alex's annual review. This is where they discuss new goals for the next school year. Alex loved entertaining them at our house!

Alex is a full-time walker now!!! Now we need a bigger house to accomodate him!! :) The housing market up here is atrociously expensive, so that won't be happening any time soon. I would at least like to get our big cement basement in a usable state, but again, money is the factor. It is so wonderful to see Alex walking all of the time now. But now, with that, come new problems--trying to catch him!!! :) He is DEFINITELY a two-year old now & does NOT listen to STOP. He will run away from me at the drop of a hat. I have to watch him every second! But don't get me wrong--I'm not complaining! He has become so much more confident & independant since walking, it's truly a blessing to see it. We just love him so much. He's becoming such a little "boy" now, and he does such funny things. He has Jorge & I in stitches sometimes, which, of course, just fuels him on! We LOVE it!!

I took Alex to see a play called "Lily's Purple Plastic Purse" at the Children's Theater back on Feb. 21. For those of you who may not know, Lily is a book character & is a mouse that gets into all kinds of adventures. This was a first for Alex. At first he was a little afraid, as the music was really loud & there were lots of flashing lights. But as the play went on, he just loved it! He yelled out, during a very quiet moment in the play, "Lily's looking for her friends!", which gathered a lot of turned heads & chuckles!! The play was 1 hour 15 minutes long & Alex made it through the whole thing! We had a lot of fun & went to McDonald's as a treat afterward! Daddy stayed home for this one!

Alex is doing great in PT & loves his PT, Melissa, so much. He will continue to see her once a week for the next 6 months, at which time there will be a new review done, with new goals. They are going to start working with Alex with walking on uneven surfaces this week. He has to be ready to walk on the beach this summer, after all! (MN beaches, not ocean beaches unfortunately!)

Next Mon. Alex sees his spine doctor, Dr. Perra. I'm anxious for this one. They will take new xrays of his spine to see if his back brace is holding his spine & keeping his scoliosis from worsening, or if, in spite of the brace it has continued to worsen. We pray that it has not worsened! Alex's school PT, Lynne, as well as Alex's orthotist, Todd (who makes Alex's back braces) have both said, in the last week, that Alex's spine looks the best they've ever seen it & he seems straighter now than ever before. The thinking is that now that he's upright & walking, it's helping him. We'll see what the xrays say next week.

Well, I just heard Alex wake from his nap, so I will close this for now. I hope that you're all doing well. I would love to hear from you! Take care & God Bless!

Love,
Amy

Friday, January 30, 2004 2:25 PM CST

Good Afternoon!
Well, the biggest news I have to give you is that ALEX IS WALKING ALL BY HIMSELF!!!!!!!!!! :) HOORAY!! Yes, that's right. Our little man is doing it. We are so unbelievably proud of him!!! He actually took his first steps on Jan. 2, 2004, while we were down visiting my parents in Iowa for a late Christmas. Luckily we had our video camera right there and we got it all on film!!!! It was truly a miraculous moment! He had been doing it some more up here, off and on, but really not much, so that's why I hadn't written about it earlier. But now, just as of 1-28-04, he suddenly wanted to walk all by himself a lot, following me from room to room! He now initiates it all by himself without me coaxing him. It just makes my/Jorge's heart swell and brings tears to my eyes. To think of how far he's come from that 9th day of September in 2001 when he was born... The doctors were extremely doubtful that we would ever see the day when Alex would walk at all, even with assistance, let alone all by himself. I ALWAYS knew he could do it and always had faith in him. He is so darned proud of himself when he walks!!!! I've put a picture of him walking on the picture page (as well as other photos) so make sure you check it out! The cats have all new worries now that Alex is completely mobile! He likes to pretend that he's a dinosaur & now wants to "stomp" on Farley & Cookie (the cats) like a dinosaur! YIKES!!! :) I have been catching it all w/our video camera. Yesterday Alex had physical therapy & his therapist is so incredibly happy with all of the progress Alex has made & continues to make. Alex's foot & leg doctor, Dr. Walker--who has been w/us since Alex was born, was also at the clinic where Alex has his PT & he is so pleased to see this too. We all think it's so great!! I'm so happy that he took his first steps at my parents so that everyone could see!!!!!!!!!! His steps are still a bit like a drunken sailor's :) but he keeps getting better every day! So how's that for news?!?!?!?!?!?!?!?!?!?!?!??!!

Let's see, what else has happened since my last update....
We've been busy w/Alex's 2 classes/playgroups & he has been enjoying them a ton. On Jan. 10 I did my Polar Bear Plunge for the Special Olympics. Check the photo page for a pic of the madness! I got to get together w/my dear old friend Shubi for dinner at a fantastic Indian restaurant just recently. I hadn't seen her for over a year, even though she just lives in St. Paul!!! It was awesome to see her!! I officially joined the Minnetonka East MOMS CLUB just this week and am looking forward to all kinds of fun things with them! I got to do a tiny bit of scrapbooking at a fellow MOMS Club member's house last Sat. I absolutely LOVE doing that but never get to do it here at our house, as it's too small & there's simply no place to set up "shop". I really wish there were, as it's very calming & therapeutic for me!! Maybe someday we'll be able to afford a bigger house... On 1/15 I took a 3hr. cooking class w/my friend Jill, who lives around the corner & has 25 mo. old triplets that are Alex's buddies. We had a great time!

Other than these things, not much else has been going on! But when you've got something as big as Alex walking, who needs other stuff!!!!! That's the most we could ask for!!! :) We have been braving some veryvery cold temps. Today it was -21 when we got up w/a -42 windchill. YUCK. I think the high today was going to be -5. Alex & I will be staying home today, thank you very much!!! :) I hope that you all are doing great as well. I would really love to hear from you!!! Please don't hesitate to sign the guestbook or email me at shadyoak@hotmail.com !! Ok, our computer is in the basement & our basement has no heat, so my little fingers are now frozen & begging to be brought upstairs to where it's warm, so I'm going to close now. Take care, hope to hear from you soon & God Bless!!!

Much love,
Amy (Jorge & Alex)

Tuesday, January 6, 2004 2:00 PM CST

Happy New Year to everyone!
I hope that all of your holidays were wonderful!! We had very happy holidays. We spent Christmas Eve at Jorge's parents opening gifts and having dinner with his family. We spent the night there too, as it was too late after all of the festivities to drag Alex into the car to come back home! But on Christmas morning we got up & had breakfast w/Jorge's parents & then we came back home & had our Christmas here at our house! This was the first year since Alex was born that we've actually gotten to put our tree up at our house, so that made it so pretty as well as special!! (You'll have to forgive me if my writing seems disjointed...our basement--where the computers are--is not heated & my fingers are just FROZEN as I'm typing this, as is my brain!!) Our friends/Alex's Godparents Jeff & Bridget O'Connor came over that Sat. to visit from Green Bay, so Alex got to open up even more gifts! He thought that all of the unwrapping was a blast and wanted us to open up every single toy that he got "RIGHT NOW PLEASE!". It was so fun to watch him!!! Then just this past weekend we drove down to Shenandoah, IA to my parents & have Christmas with my family. Brian (my brother), Christy & their 2 girls Brielle & Avery were there from Lee's Summit, MO as well. It was GREAT seeing everyone again & the kids had a great time together. I also got to see my great friends Wendy Palmer & Angela Nosworthy!! Even though it was brief, it was very special as well!! Love you guys!! :)We left on Sat. to drive half-way home, stopping in Ames to stay overnight. We had some nasty weather at the beinning of the drive with near white-out conditions due to the strong winds. Once we got onto I35 it got much better though. We had fine weather on Sun. for the rest of the drive & we stopped at Cabela's in Owatonna for lunch & so that Alex could see all of the animals there. He really liked that!!! We had a wonderful holiday season & were very blessed to be with so many friends & family during that time!! And Alex must have been SUPER good this year (of course!!!) because Santa was very very good to him!!!! :) It was a very special time!

This Sat. (1/10) I am going to be doing the Law Enforcement Polar Bear Plunge which benefits the Special Olympics. I've been collecting monetary pledges, all of which will be going to the Sp. Olym., and on Sat. at 1pm I will be plunging into White Bear Lake outside of St. Paul! This will be my first year doing this and I'm really excited about it, as well as TERRIFIED as our high temp yesterday was -2!!!!! They say though that on Sat. it is supposed to get up to 32 deg. I can only hope!!! :) There will be a post-plunge warming party at the local VFW post. We'll be staying at that for just a little bit & then will be going to Jorge's parents house, as some family is getting together there that afternoon. We'll be dropping Alex off at Jorge's parents before hand & then Jorge will be coming with me to catch the craziness on film!!! If anyone would like to pledge (PLEDGES ARE MOST WELCOME!!!), please make your checks out to the SPECIAL OLYMPICS MINNESOTA and drop them in the mail quick! I'll put our address at the end of this journal entry. Also, please email me letting me know that you're doing so & the amount so that I can add it to my pledge sheet & keep an eye out for it in the mail. Thank you very much in advance for any pledges coming this way!!I have also sent in my application to become a volunteer for the Sp. Olmp. at their various events. I am really really REALLY looking forward to helping out & giving something back!!!

OK, I hear my little guy waking up from his nap, so I'll have to close for now. I hope that you all had a wonderful & blessed holiday season with family and friends!! God Bless You all & I hope to hear from you soon!!!

Much love,
Amy
3534 Shady Oak Road
Minnetonka, MN 55305

Monday, December 15, 2003 1:22 PM CST

Real quick update!

1. NEW PHOTOS FINALLY ON PHOTO PAGE!!!! CHECK 'EM OUT!

2. Alex's surgery on 12/4 went really well, though he did have some respiratory problems & had to spend the night in the ICU. But he was discharged the next day and though he can't take a real bath (only sponge) for 2 weeks, he's doing great otherwise.

Alex just woke up from his nap, so I have to go, but I wanted to update you. And I'm so happy to have new pics for you!! Enjoy!!

Love,
Amy

Wednesday, December 3, 2003 12:18 AM CST

Happy Holidays Everyone!
This will be a fairly brief update, but an update nonetheless!
I hope that you all had a fantastic Thanksgiving. I know of one family that had an extra special one with a new little guy in the family! (A BIG SHOUT OUT TO THE DREWS!!) We had a great visit with my family in Shenandoah. We drove down on Wed. Brian & his family also arrived on Wed., but in the evening. We all had a great time. It's so wonderful to be able to spend quality time with family. We got to see my Uncle Carl & Aunt Lois, my cousin Marie(whom I hadn't seen for 15 years!) and her husband Doug, and my Dad's cousins Vic & Delores Sloan, whom I hadn't seen since my brother became an Eagle Scout!! It was a very special time. A little crazy too, with Alex, Brielle & Avery all in the house at once! But loads & loads of fun. We also got to see some friends briefly. (Loved seeing you Wendy & Lyle--even if it was at WalMart! And loved seeing you Lori & Jeff!!--made the family think that both Jorge & I went AWOL at different times!) We left Shen. on Sat. early evening & drove 1/2 way home to Ames, where we stayed at the Microtel. We drove the rest of the way home on Sunday, stopping by the Medford Outlet Mall along the way for a little shopping. With our drive being 6 1/2 hours, it sure makes it nice to break it in half like that.

So, what's next? Alex is having surgery tomorrow morning (#14) at 7:45 (we have to arrive at 5:45am) to remove at least 2 dermal sinus tracts from his back. These are the ones that continue to get infected, causing the mass on his back. Dr. Cornelius Lam, Alex's neurosurgeon, will be performing the surgery, and it will be done at the University of MN. It's scheduled for 3 1/2 hours, but hopefully will not take that long. It's one of those things where Dr. Lam will not know how invasive the tracts are until he gets Alex opened up. We pray that it's not too invasive & that the tracts are not in any way involved with the spinal cord. Dr. Lam is pretty confident that they aren't, but again that is something he will not be able to tell until he's in there. They believe Alex will only have to stay over night in the hospital. I will be staying with him, like usual, so I've got to get packed up today. (Seems I just finished UNpacking!). Dr. Lam thinks Alex will probably only need a couple of days recovery time. We hope that is the case too. I'm sure our little Hercules will be fine, but I/we always get nervous nonetheless. Jorge will be taking tomorrow off from work in order to be there. Please keep Alex in your thoughts and prayers.

Other than that, Alex & I are taking it easy today and have been doing some decorating around the house. This is the first year since Alex was born that we'll be putting up our big Christmas tree, so I'm VERY excited about that!! (The year he was born we were staying at Jorge's parents, and last year, due to my nose surgery, Alex & I were at my parents' for an extended period, so we didn't bring out the big tree either year.) I hope that you are all well and continue to be, and that your Thanksgiving was blessed. We love to hear from you! TAKE CARE & GOD BLESS!

Love,
Amy

p.s. I have some really cute photos of Alex that I want to get put on his webpage, but my computer is still broken! I will keep hounding Jorge to fix it so that you can see some updated pics of Alex soon!!

Thursday, November 13, 2003 1:31 PM CST

Hi everyone. Here is another update for you. This has not been the best week, to say the least. But I hope that you're all well!
The appt. w/Dr. Perra (ortho-spine surgeon) was on Mon. to go over the MRI. The good news was that there was no fusion of the vertebrae. Dr. Perra thought however that there may be another tethering of the spinal cord & he wanted us to go see Alex's neurosurgeon, Dr. Lam to see if he agreed w/that. So, we had to go see Dr. Lam on Tues. & he said no way is there tethering, which in it's own way is good news. However, on Mon. Dr. Perra said that if there was no tethering, Alex will have to have "growing rods" surgically placed in his back. The stinker that comes along w/the growing rods is that Alex will have to have surgery on his back then every 6 months for the next 5-6 years. After 5-6 years have passed of doing that, there becomes too much scar tissue to allow them to use the growing rods anymore. That is when he would have to have the big-guns surgery of having his spine fused. This would mean that Alex's torsoe could no longer grow. The rest of him would continue to grow, but his torsoe would not. And Dr. Perra said that he has never seen a case where a child has had to have the growing rods put in, where the fusion surgery has not had to follow. Suck. So, after seeing Dr. Lam on Tues. I put a call into Dr. Perra's nurse to find out how long we can wait to have the growing rods put in. We, of course, hope that that can be put off for a number of years, 5 at least, so that by the time Alex has to have the fusion surgery done he will be done or at least close to done growing. I am waiting to hear back from Perra's office. Alex also got his new scoliosis brace (a TLSO) on Monday. He hates it, as he really can't sit on the floor in it without tipping over & he has a very hard time crawling in it. Dr. Perra's solution to this was to have Alex sit in a chair all the time (HA, yeah, that's practical when all of his toys are on the floor) and "well, now he's just going to have to walk". Easier said than done. You know, it's not like Alex doesn't have a million other things to contend with. It's not like he's just being lazy & choosing not to walk. It just ticks me off. Plus, the brace goes from the neck down to the pelvic bone, which does not allow Alex to use his abdominal muscles. One of the key things in walking/standing is abdominal strength. Now how is he supposed to get that when he's supposed to be in that brace for 23 hours a day??????? Alex usually tries to sit up on the floor to play, only to tip over. He then tries to crawl, says "owie" & then just wants to lay on the floor, or have Mommy hold him constantly. Oh, I'm just at my wits end.

To add to all of this then, my 3 year old car had a gasket go out & I had to take the car in. Luckily though, this was covered under warranty (I should think so since the car is a 2001 model!!!) and I got the car back within 1 day. Then yesterday Jorge took the day off to hang with us & we were having a wonderful day. We went to the downtown Mpls. Marshall Field's for a lite lunch then went to their 8th floor auditorium to see their holiday exhibit, which is Charlie & the Chocolate Factory this year. It was beautiful & fun. But unfortunately, while we were enjoying this, some jerk stole my purse from underneath the stroller. We didn't realize this until we were home, so last night I had to make a million calls to cancel this & that, as my checkbook, check card, driver's license, insurance cards (w/Jorge's SSN on them), as well as pictures of Alex & many other things were in the purse. Today I had to go to the bank, the DMV for a new license & deal with all of the hassles that go with that (like when they ask to see your driver's license, even though you just told them it was stolen & they still say 'well, I really need to see a driver's license'). I reported to the credit agencies both my & Jorge's ssn's to hopefully keep any fraudulent activities from occuring on our names. I also left a message for the police to make a report last night, but they haven't had the decency to call me back yet. But, even with all of this, I did manage to get Alex to his ECFE playgroup (part of it at least) this morning so that he could have some fun too.

I in turn feel a bit like pulling all of my hair out & screaming "CALGON--TAKE ME AWAY!!!!". Now it's just a waiting game...for the doctor's, for my new license, my new banking stuff, everything.

So that's our life right now. How are you all?

Love,
Amy

Thursday, November 6, 2003 12:33 AM CST

OH MY GOODNESS...where to begin!
Yes, I know. It's been too long once again since I've updated Alex's website. And once again, I will not have new photos to post. My computer is broken at the moment, so I'm using Jorge's, and I don't know how to upload photos onto his. So there's my excuse on that part anyway. As far as updating the journal goes, sorry, I've just been busy!
So what's been happening? I'll try & recap for you back to Sept. when I last updated...
Well, I guess the end of Sept. didn't really bring too much. But the first weekend in October Alex, Jorge & I travelled down to Shenandoah, IA (my hometown) to my parents for my 15th high school class reunion. We had a blast. Friday we went to the homecoming game (just Jorge & I--Alex stayed w/Grammy & Popop) & saw the Mustangs put in a good game, though they ended up losing 28-14. Sat. night was the dinner & we all got to see a lot of funny old pictures! Alex was w/Grammy & Popop again, as the dinner was at his bedtime. Sun. though there was a family picnic that Alex got to go to & meet some of my old classmates & their children. All in all the weekend was a lot of fun & it was great seeing everyone again.
That first week in Oct. Alex started "school" againm though now it's 2 times a week. On Tues. mornings he has ECSE (Early Childhood Spec. Ed.), which pairs special needs kids (both phys. & mental) w/"mainstream peers" from 10-11:30am. Alex's teacher's name is Julie & he is in that class w/his triplet friends from around the corner, Noah, Bryn & Lauren, which he really enjoys. They are 23 mos. now. We parents are in the class too, so it's nice for me to hang w/their mom, my friend Jill. On Thurs. a.m. from 9:30-11:30 Alex has ECFE (Early Childhood Family Ed.), which he has participated in before. This is basically playgroup, but the parent(s) separates into another room for the majority of the class to have topic discussions. The ECSE class is essentially playgroup as well, but there is a spec. ed. teacher there, as well as a speech clinician & physical therapist(luckily the same one that comes to our house), and these people have certain goals in mind for the special needs kids that they work on during the class. The parent(s) does/do not separate from the kids in this class. Alex enjoys both classes quite a bit.
Alex had a follow-up appt. w/Dr. Dahl for his right leg in mid-Oct. & he was quite pleased w/the leg. Alex has quite a bit more flexibility now in that leg. He can now straighten & bend it & can have the brace off of his leg for up to 6 hours p/day. Alex loves using his walker, but unfortunately still cannot use it at home. Our house is simply too small & he has no room to move in it w/his walker. He loves using it at the school w/those big long halls to walk down. Hopefully by spring our financial situation will have changed & we will be able to add on to our house. We pray that this will happen. Somebody has to win the lottery!! (it's just never us...)
Alex also had his 2yr. portraits taken around this time. I would post those onto this site, but again, they're in my computer, not Jorge's, so it'll have to wait. The pics turned out darling of course. Alex & I also went to an apple orchard around this time w/my friend Anita & her son Meshak. We picked Haralson apples, took a tractor-drawn hay ride, played in the pumpkins & pet some goats. Alex had a great time & thought Mommy trudging through the apple trees was hilarious! He also LOVED the hay ride. Loves those tractors!!
On Mon. Nov. we received some more bad news. I took Alex for a follow-up visit w/Dr. Perra, Alex's spine-ortho doctor for reevaluation of his scoliosis. His last visit had been 3 months prior. According to the xrays, Alex's scoliosis has worsened by 21 degrees in that 3mos. time period. This is really really bad. Dr. Perra informed me (way too bluntly I must say) that if it isn't stopped somehow, Alex will not live to see his 20th birthday. Of all the things Alex has going on, I never thought of his scoliosis as the thing the thing that could be fatal. But as the curve worsens, his organs, i.e. heart/lungs especially, no longer have room to function. Dr. Perra just came right out & said this, and as I was bawling & wiping snot all over my sleeve & trying to comfort Alex as he kept saying "Mommy really sad", this @#!*&!#@&*!! doctor just kept right on talking!!!! As if I could hear ANYTHING after being told that!!! And there was no nurse in the room to help. Dr. Perra finally got a little bit of a clue & handed me a (yes, ONE) kleenex, but still continued to talk. Needless to say, I was devastated. I managed to ask Dr. Perra what our options were & he said cast, brace &/or surgery. From the xrays it appears as though there may be some fusion of Alex's spine in the thorax area, or perhaps some tethering. Dr. Perra ordered an MRI so that he could better see exactly what we're looking at. He was also concerned w/some major curvature in the lumbar area. I got the first MRI spot I could for Alex, which was on Thurs. Oct. 30 at 8:30am. I won't know those results until this coming Mon., Nov. 10. Jorge will be going to this appointment w/me. I can honestly say my brain just sort of died after hearing those words from Dr. Perra's mouth on 10/27. I just went numb & stayed that way for 3 days. I just couldn't handle any more bad news. It just seems that just when we think we're in the clear, something else comes up. It is just mentally exhausting. But, I just have to pick myself up & move on. It doesn't help Alex to have his Mommy so removed. The MRI itself went fine. Alex is old enough now that he has to be put under general anesthesia for it, as otherwise he'll move around too much. But there were no problems or complications. I'm just very anxious to hear the findings. On Oct. 31 Alex was molded for a new scoliosis brace, as he'd outgrown his old one. He will be fitted in that on Mon. 11/10 as well. This brace will have cars & trucks on it (they have all kinds of fun prints you can put on braces...Alex has monkeys & bananas on both of his leg braces). The brace will need to be worn for 23 hours a day.
Other than these medical things, Alex & I have been doing our usual running around. Alex is really getting into watching movies now & his favorite of the moment is Shrek. He also really likes The Emperor's New Groove, Lion King & the newest, Finding Nemo. I really like watching these movies w/him too! Gives me a mental break!!
Alex has also started receiving physical therapy 2x a week at Gillette Children's Hospital. That just started this week, with his evaluation being last week. He went yesterday & will go again today. Normally it will not be 2 days in a row. I am trying to get them scheduled for Tues. & Thurs. afternoons, the same days he has "school" so that he doesn't have something going on every day of the week that he HAS to be at. He has 2 different PT's, Ginny & Melissa & he seems to like both of them, though I think he likes Ginny better (as do I), as he kept asking for her instead yesterday.
It has been cold here lately. It snowed 1-2" early this week. Today it is VERY cold, waking up to 17 as a temp & 32 as a high. Tomorrow it's only going to be 25 for a high. But at least it's sunny!!!! We hadn't had sun for nearly 2 weeks. And luckily I picked up a new hat & some mittens for Alex earlier this week. And luckily he likes wearing them! Now I just have to do the same for myself!!! It is supposed to get to the upper 40's this wkend I think, which will seem like a heat wave.
We don't have too much else coming up as of right now, other than the appt. on Monday to find out the MRI results. That may change after that. Oh, and the sinus tract on Alex's back is infected again, so he's on another round of antibiotics. The plan is to have that operated on & removed the beginning of Dec. sometime. Needless to say, I'm very anxious for the MRI results & very thankful that Jorge will be there with me this time.
We will be going to my parents house in Iowa for Thanksgiving this year, as will my brother & his family (we alterate between families each year--xmas & turkey day--as do Brian's & we always have it so that we're at Mom & Dad's at the same time), so that will be a great time. Jorge will be taking that Wed. off, so we'll drive down early that morning & come back on Sun. I'm really looking forward to that!!!
I hope that you are all doing well. I would love to hear from you. Please keep the thoughts & prayers coming. We need them. Take care and God Bless.
Love,
Amy, Jorge & Alex

Monday, September 22, 2003 7:42 PM CDT

This will be a quick one, but wanted to update you on Alex. The thing on his back does not involve his spinal cord. Dr. Lam has him on antibiotics right now for 2 weeks. Alex will see him again on 9/30 & we will discuss what to do next. The great thing is though that it's (obviously) nothing serious. I have not gotten to speak to Dr. Lam myself. This info was relayed to me by my father-in-law while Jorge & I were in San Antonio. San Antonio by the way was FANTASTIC and the wedding was wonderful. That's all I have to say at the moment as I need to eat dinner still! Take care & God Bless!
Love,
Amy

Sunday, September 7, 2003 7:58 PM CDT

*****ADDITIONAL INFO ADDED ON 9/11:*****
Alex is scheduled for an MRI on Friday morning (9/12) at 8am. Dr. Lam believes there is an abcess in one of Alex's sinus tracts (where the skin tags were) on his back. Dr. Lam wants an MRI to get a better look at it, as well as to see where the sinus tract goes, i.e. Does it go into Alex's spinal cord? We are hopeful, of course that it doesn't as if it does, it makes it an emergent case. But we are also hopeful because Dr. Lam doesn't seem too worried. If he were really concerned that the spinal cord was involved, he would have had us go through the ER to have Alex admitted to the hospital so that an MRI could be done sooner. It's also encouraging that Alex has had no sign of sickness, i.e. pain, fever that would be associated if the spinal cord were involved. Dr. Lam has told us to go ahead & go to Texas as well. Whether the abcess (or whatever it turns out to be) is involving the spinal cord or not, it will have to be surgically removed. It's just that if it's not involving the S.C. the surgery can wait until we come back from TX. We feel comforted knowing that Alex will be in good hands with Jorge's parents while we're away. Jorge's Dad is a cardiovascular surgeon at the U of M & Jorge's Mom used to be a nurse. All of the doctor's at the U know Jorge's Dad, so they will be very good at keeping him up to date. It was already going to be hard to leave Alex, but now it's going to be nearly unthinkable. But hopefully I will be able to relax enough at least to be able to enjoy myself & not be consumed by worry the entire time. They don't think they'll have the results of the MRI until we're already in TX. Anyway, that is the latest update. I will keep you posted, though it won't be until we've returned from TX. (9/21). Hope you are all well. I would love to hear from you!
Love,
Amy
****************************************



Hi All!
Well, this may be a brief update, but I'll try to catch you up to date...
Alex now has his fixator off. He was then in a cast for 2 weeks. That cast is now off & he is in a full leg brace. He got his cast off & brace on, on 9/2. The knee is now straight. However, when they took the cast off, it looked as though his knee was on the inside of his leg. Dr. Dahl "thinks" that what happened was, while the leg was straightening, that brought out a new problem that he "didn't notice before". That problem being (he "thinks"---I was totally brushed off when I questioned him...very very frustrating) that his tibia (shin bone) is twisted outwards, making the knee appear inwards. Dr. Dahl says that it's not something they would do anything about anyway until he was 8-9 years old. I'm extremely ticked off at this doctor for the way he's brushing me off. I will have to do some research to find someone to give a 2nd opinion. Dr. Dahl also noticed, in the xray taken 9/2, that Alex has a hairline fracture above his right knee but that it appears to be healing. He says this "probably" came from when they took off the fixator & were moving him around to put the cast on. It's right at one of the sites where a pin was going through his bone. Alex can however still walk w/his walker, crawl, & creep along furniture & such. To sum it up, we're both very pleased & displeased w/the results. We thank God that his leg is now straight, but frustrated by the rest of the problems. Alex is happy to have it all off. The brace is hinged at the knee, however for the first 3 weeks that hinge is locked in order to keep the leg straight for a longer period of time. We'll see Dr. Dahl again for follow-up in 2.5 weeks.
Now, on to the next problem. We don't know what it is yet, in terms of a diagnosis, but I noticed today first that on Alex's back there seemed to be some sort of puncture wound that was oozing. I noticed this because when I changed his diaper there was "stuff" on it at the very top. Upon closer inspection, i.e. totally naked, I realized that Alex has a huge lump/growth on his tailbone, under the skin. It's very hard to the touch, and it seemed harder to the touch before putting him to bed than it even did this morning, but that may be my imagination. The lump/growth (whatever it is) is underneath the skin. It is near the site of where Alex had to have his original spinal cord surgery. Our concerns are that there is another tumor on Alex's spinal cord, and/or it is his spinal cord itself. It doesn't seem to bother him, but it has me & Jorge (me especially--worrying Mom, etc.) bothered immensely. It just seems that just when we thought the surgeries were over & Alex was in the clear, something new comes up. I am physically sick to my stomach & soul, and it takes everything in my being to cover those feelings up so that Alex doesn't feel it too. I put a call into Alex's neurosurgeon's (Dr. Cornelius Lam) nurse & left her a voicemail explaining the situation & asking her to call ASAP in the a.m. An addition to the problem is that Jorge & I are supposed to be going to San Antonio, TX this coming Sat., 9/13. Jorge is in our friend Jason's wedding there & then we are going to make it our first vacation since 1999, as well as our anniversary gift to each other (We celebrated #5 on 9/5). We need to get Alex in to see Dr. Lam before that time. Alex actually has an appointment tomorrow at 2:30pm with Dr. Perra, his spine ortho-surgeon & I am hoping that Dr. Lam can see Alex either before or after that appointment, as both doctors are at the U of MN. We are assuming that Dr. Lam will probably order an MRI, but as I said that's only an assumption. I just want to find out what it is & I pray to God that it is nothing serious, maybe just some fatty tissue that can be easily removed, and that he won't have to undergo spinal cord surgery a second time. I'm scared but try to keep the faith. It just sometimes seems like our little guy can't get a break. If I have not heard from Dr. Lam's nurse by 8:30 tomorrow morning, I will call her. I will keep you up to date.
As far as other news goes...
Alex will be turning the big "2!" on 9/9 (Tues.). It's hard to believe. Time flies so quickly. We had a big birthday party for him here at our house on 8/30. Grammy & Papa Beavers were able to come up from Iowa, though my brother & his family couldn't from Lee's Summit, MO. It was great to see Mom & Dad & we deeply missed Brian's family! Weeta (slang for Grandma, in Spanish) & Papa Molina were here of course, as well as most of Jorge's family that lives around here. We also had a number of friends that were able to make it as well. The weather was unbeatable (72 & sunny!) and we were outside the entire time. Alex received many many wonderful gifts & had a great time. It was a very very special day for a very very VERY special little boy. I will be taking Alex to the zoo hopefully on his actual birthday. He loves the zoo! I don't know how on earth I'm going to survive being away from Alex while in Texas. He will be staying with Weeta & Papa Molina, and though I know he will be in VERY good hands, I/we will miss him beyond comprehension.
As I mentioned earlier, Jorge & I just celebrated our 5th (!!!) wedding anniversary. We had a quiet, quick & cheap dinner at a little authentic Mexican restaurant called El Gordo. The trip is our real celebration. If Alex needs surgery, however, I don't know how that will pan out.
Alex's new ECFE classes begin this Thursday, which I'm sure he will really enjoy. I know of one Mom & her little girl Lily from his last ECFE class that will be in this same one, as well as one Dad & his little girl Emma. It will be nice to see familiar faces! Alex will be having a new teacher this year named Julie. Up until now Alex has been seen by his teacher (Sue) in our home. But with this new teacher also comes a new venue. His first meetings with her will be in our home so that she can become familiar with him. From then on Alex will go to a classroom, where he will not only see his teacher, but also his PT Lynne & a speech pathologist. It is a class that intermingles special needs children with non-special needs children. We have already met one little boy (and his Mom)ill be in Alex's class. Ethan is also physically special needs like Alex, though due to CP. We are also hoping/trying that my friend Jill will also be in the class with her kids--triplets named Noah, Bryn & Lauren. Noah is physically special needs, though his 2 sisters are not. They are 20 months old. Those classroom visits will begin, I believe, sometime in Mid-October. The ECFE (Early Childhood Family Ed.) will be on Thursday mornings & the other class--ECSE (Early Childhood Special Ed.) will be on Tuesday mornings, both classes being at the same location. Between those classes & doctor appointments, we will be very busy I think. But that's ok, because in the winter you don't want to be stuck inside anyway! (though driving in the "yuck" isn't fun either)
October will also be bringing my 15-yr. highschool class reunion. It will be the first wkend in Oct.--homecoming weekend. I am looking forward to that, though I can't say the same for Jorge! Alex will of course be coming with us to that. I have to show off my gorgeous, brilliant & incredibly sweet little boy don't I?!?!?!!!
Anyhoo, that is the news from our end. I will keep you posted on Alex's back. Please keep him in your thoughts and prayers. We are blessed to have good friends and family such as you.

God Bless,
Amy, Jorge & Alex

p.s. Alex, at nearly 2 years of age, has finally passed the 20 pound mark, weighing in at 21.5 lbs. He is 31" long. He may not be a lumberjack, but what he lacks in size he more than makes up for in brains, personality & looks!! (If I do say so myself!!)

p.s.s. I have pictures from Alex's birthday party but have not had time to upload them onto our computer. Hopefully I will be able to do that in the not-too-distant future???

Monday, August 18, 2003 6:58 PM CDT

Well, it's been a long day, but Alex's surgery went well. We got him to Gillette Children's Hosp. at 11am for a 12:30 surgery, only to be told that the doctor was running about 2.5 hours behind. That's maybe ok if Alex was older, but there is no way to explain to a 23-month old that he can't eat. He hadn't eaten since 7pm the night before. He could have eaten up until 4:30 this morning, but do you think it's wise to wake a child up in the middle of the night to force feed him?? We sure didn't. Needless to say, we were quite perturbed, as all of the other patients ahead of Alex were much older & could easily have been bumped to a later time, as they would understand why they couldn't eat & they were all happy watching videos & playing video games anyway. Another reason why they could have been bumped to put Alex ahead is, once Alex was actually in the operating room, his procedure took all of 20 mintues!!!!!!!!!!!!! Poor little guy. He did well, all things aside. They did not put him under full anesthesia. They did an IV sedation that just made him real loopy & so that he couldn't feel a thing. They did have to give him some morphine once he was back in recovery w/us. We finally got him home at about 5:30pm. He's doing good, though the leg does seem to hurt him some. He is now in a full-leg cast (bright green!) for 2 weeks. After that he will be in a full leg brace called a KAFO. It will have a hinge at the knee though at the beginning the hinge will be locked in a straight position, probably for about 2 wks. After that the hinge will be released. He will not have to wear the brace forever, though I don't know how long he will have to. I never got that info from Dr. Dahl. He's always in such a hurry that questions frequently don't even have time to be asked. All things aside, we're very happy that the fixator is off. I forgot to ask if we could keep it as a souvenir & I'm a bit bummed about that. Maybe I can call & see if they still have it around. Anyhoo...time to go. Alex is asleep now & I'm in great need of some R&R myself. God Bless You All!
Love,
Amy, Jorge & Alex

Wednesday, August 13, 2003 1:07 PM CDT

Hi!
I hope everyone is doing well. I can't believe how quickly this summer has gone!!
WELL, the BIG NEWS of the day is..............
ALEX GETS HIS FIXATOR OFF ON MONDAY AUG. 18!!!!!!!!!!!
Can you believe it?!?!?! This is great news. His leg has done so well that he gets it off early! Please check the photo page too as I've posted some new pics of Alex walking! The surgery will be same-day surgery, which will be nice. He'll be in a cast then for I think 2 weeks. While he's under anesthesia to remove the fixator they will be taking a mold of his leg to make a brace. He will go into that brace once the cast is removed. I tell ya, Alex is going to be so dang happy!! :) And so will we!! And it will be just in time for his 2nd birthday (9/9)!!!! We are having a party for him at our house on 8/30, which my Mom & Dad will be coming up for. We are just so thrilled by this news of the removal. I just found out yesterday!
Anyway, I'll keep you all posted on his progress afterwards.

Jorge & I had a great time in Hibbing at the wedding we went to. Did not have a chance to get up to Canada though. I think I'll also put a picture of the lake at the site where the wedding was. The park was called Mesaba Co-op Park in Hibbing, MN. The land was purchased 75 yrs. ago by some Finnish miners & turned into a camp site, lodge site & lake (the lake was already there actually). It's still privately owned & absolutely gorgeous! Jorge & I went out canoeing & got up close & personal w/the loon pair that live on the lake. They have a couple of chicks too. They let us get within 3 feet of them before diving under the water. It was amazing! We absolutely LOVED it & missed Alex the whole time. We will be taking him there when he's a little bigger for sure!
Well, I've just heard Alex wake from his nap so I will have to cut this short. He has speech therapy at the U this afternoon, so we've got some things to do before that happens. I will write some more later! Alex is just doing GREAT & saying more & more words every day!!!! Ones I didn't even know he knew! He's truly amazing & a gift from God. God Bless!
Love,
Amy, Jorge & Alex

Thursday, July 31, 2003 12:13 AM CDT

Hi Everyone!
Well, I had every intention of updating the journal right now, but I've just heard Alex wake up from his nap WAY early & with a vengeance. I will have to come back to this. I DID however get some new photos on the photo page, so check those out! I may not get back to this until after the wkend, as Jorge & I have a wedding to go to in Hibbing, MN, way the heck up north. We're hoping to maybe drive a couple more hours on Sunday just to briefly drive over the border into Canada, just to say we've been there! :) Alex will be staying with Jorge's parents. The wedding is an all weekend thing at a park & we didn't want to expose Alex to the Minnesota State Bird, a.k.a. the Mosquito. Hope you're all well. Check out the pics!
:)
Love,
Amy

Thursday, July 17, 2003 5:20 PM CDT

Hi everyone!!
Just a quick little update for you here. For those of you who haven't checked this in a while, you can go back and read previous journal entries, as I'd just updated it really recently.
Anyway, the update is.........
Today Alex had an appointment with Dr. Dahl, the fixator doctor, and--unexpectedly (at least to me)--he got the motor taken off of his fixator! What does that mean, you ask? I'll tell you! It means that Alex's leg is straight!!!!!!!! HOORAY!!!!!!!!!!!!!! Alex's leg will now remain in the fixator in that fixed position for at least another 6 weeks. The rest of the fixator looks just like it always did. The difference is now the bulky motor is gone & there will be no more stretching to cause Alex pain!! You can't beat that!!!!! I was so incredibly happy today after the x-rays when Dr. Dahl said it was straight. It was looking pretty straight to me, but I'm no doctor! Anyway, Jorge & I are just thrilled & wanted to let you know. God blesses us in so many ways.
Alex did get a little infection in one of the pin sites, so he started on antibiotics yesterday. Luckily he loves the taste of them! He actually requests it: "bubble" (it's bubblegum flavor.
Anyway, just wanted to let you know our great news!
:)
Love,
Amy

Friday, July 11, 2003 1:37 PM CDT

Good Afternoon!
I hope this Friday is finding everyone well & in good spirits! TGIF! :) We are all doing well. The weather is a little funny today, with rain coming in spurts, so I haven't been able to decide what Alex & I can do today.
We've had a busy rest of the week. Monday brought Alex's first appointment with a speech pathologist named Andrea at the U of MN. In May he had had an evaluation done by a different S.P. named Jim at the U, and truthfully, I liked him, as did Alex which is more important, much better. He just seemed to really respond to Jim better. I am going to see if we can reschedule with him, though I know he's really busy as he also does all of the inpatient therapy at the U. I'll keep my fingers crossed though. Andrea was very nice. She just didn't seem to bring Alex out like Jim did. We'll see...
Tuesday brought a visit to Dr. Ann Van Heest, Alex's upper-extremeties ortho surgeon. This was just a check-up. Alex's left shoulder really leans inward, but she said there's nothing that can really be done about that, as it's due to Alex's severe scoliosis. His entire anatomy is twisted forward due to his spine curvature. She wants to see him again in 2 years. Yes, I said YEARS! She's very pleased with Alex's right hand & his mobility & function with it. She's also pleased with Alex's mobility of his left arm & how high he can reach with it.
Wednesday Alex's teacher, Sue, came to the house to work with him. She brought a toy camper van w/some people, pets, etc. & Alex really enjoyed the "pretend play" that he did with that. He worked on that nearly the whole hour!
Thursday Alex's Physical Therapist, Lynne, was here in the morning. She got to see Alex try walking with his walker for the first time. It's tough for him since after he takes 5 steps he's at the end of our house & has to turn around again. We need to build him a runway outside! :) But she was really happy with the determination that she saw in him. That's one thing Alex has certainly not ever lacked in---DETERMINATION!!! He, as always, is our little Hercules! I also took Alex to Family Storytime at the local library that morning, after Lynne had gone. Thursday afternoon was an appointment with Dr. Dahl, the Fixator (right leg) doctor. He's happy with the way Alex's leg is straightening, though it's taking longer than expected. But he expects another 2 weeks max of the actual stretching of the leg. Then the Fixator will remain on in that fixed position for who knows---maybe 3-4 more months? The foot position has been corrected, so we no longer have to manually adjust that every day. I don't know if you remember, but the leg is attached to a motor that adjusts Alex's leg 4mm per day. Thankfully we don't have to do that manually. If we did, it would have to be done every 6 hours, even during the night. That wouldn't have been nice for anyone. Dr. Dahl also got to see Alex walk with his walker for the first time. Dr. Dahl actually captured it on videotape he was so impressed! That's our little Hercules!! We'll see Dr. Dahl again next Thursday. Alex sees him every Thursday.
I don't know if I ever remembered to mention to you all that Alex finally had his Gastrostomy Tube (G-Tube) removed. Well, in case I didn't mention it, he did! It's very nice not having that thing in his tummy anymore, coming open & leaking stomach fluid. ICK!!!!Alex still can't burp, nor can he throw-up, due to his Nissen (we always "burped" him through the G-tube), but that doesn't seem to bother him. Though he has been sick to his stomach a couple of times and tried to throw up, which he was unable to do & just kept choking. That was absolutely heart breaking to us, because there was really nothing we could do for him except rub his back. They assure us that as he grows, that Nissen will also grow & he will eventually be able to do those things on his own. It's not that we ever want him to have to throw up! It's just a part of life. And burping, well, boys will be boys & he'll want to keep up the others!
Today is our one day that we don't have anything to do & like I said, I'm not sure what we'll do. We may just hang out at home, if we don't go crazy! We got some free tickets to the circus, so tomorrow at 2:30 we are going to take Alex to his first ever circus. I hear this one is a pretty good one, so hopefully Alex will enjoy it. I think he'll really like seeing the animals at least. They say it's 5 rings. Tomorrow evening we're going to Jorge's parents. Jorge's Uncle Arnoldo & Aunt Cory are moving back to Guatemala, so they're having a going away shindig for them. We won't be able to stay long as it starts at 6pm & Alex's bedtime is 7pm.
Well, I hear the little guy waking up, so I'd better close. I hope that you're all doing well & enjoying your summer! We'd love to hear from you! Our email is on this website & I'll also put our home address at the end of this journal entry. Take care everyone & God Bless!

Much Love,

Amy, Jorge & Alex
3534 Shady Oak Road
Minnetonka, MN 55305

Tuesday, July 1, 2003 12:25 AM CDT

Hi Everyone!
Can you believe it's July already?!?!?!!! This summer is just going by too quickly!
I just wanted to give you all a really quick update. We're all doing well. Alex is getting frustrated with not being able to move around much. He can move some, but our house is so darned tiny that it's really next to impossible for him. As soon as he drags his equipment 2-3 "crawls", he's at the end of the room & there's not enough room to turn around in. He really needs bigger open spaces. It's been tough on me as well, since he's pretty much completely dependant on me to get anything or anywhere. I had a couple of days last week where I was really at my wits end and feeling depressed. It was pretty rainy last week, so we were stuck inside. Alex was going crazy & so was I. When it's nice out, we are pretty much always on the go, since the house tends to make us nuts. It really stinks. A house should be someplace that you can go to relax, not someplace you're constantly trying to run from. Unfortunately, adding on to our house or moving is not a possibility because it's so darned expensive, so we're just making do. I don't really feel like I have the right to complain though, when I think of everything Alex has been through!
Other than going nuts (ha!), we're fine. The weather is supposed to be nicer this week, so that helps. I think Alex & I will go to the MN Zoo this afternoon. Our good friends Jeff & Bridget (also Alex's Godparents) are coming down from Green Bay, WI to visit their families this weekend, so we're hoping to get to see them as well. It's probably been about a year since they last saw Alex! My whole family is coming up from their prospective areas later this month to visit for 4-5 days. I'm really excited about that! I have been working on a weight-loss/exercise plan since Feb. of this year & I weighed myself today & have lost a total so far of 26.6 lbs!!!! I'm so happy about that & very proud of myself as well! To celebrate, of course, I had to treat myself to a Blizzard! I made it a small so that I didn't ruin all of my good work! :)
Alex's cast is now off of his left leg & he now wears a custom brace on that foot & lower part of his leg. He wears that 24-hours a day, except during bathing. Dr. Walker is really pleased with how it looks. I take Alex once a week to see Dr. Dahl, who put the fixator on his right leg. He's also pleased with how things are coming along. One of Alex's pin sites became infected recently, so he had to be put on liquid antibiotics for 7 days. It seems to be much better now. Alex hates having the pin sites cleaned & cared for, but it is a necessary evil. "Only" four more months of the fixator. After that he will be in a full-leg cast for an additional 2 weeks & then will have a walker. I don't know how we're going to manage a walker in our tiny house, but I guess we'll have to!
Jorge is doing well. He's busy at work. He's also on a summer soccer league again & has games every Tues. night & sometimes Sun. afternoons. That means tonight Alex & I can stay later at the zoo, which I think closes at 6. Hopefully that will mean we'll miss the rush hour traffic. Jorge is meeting friends tomorrow night for dinner & drinks--kind of a guys' night out thing. I actually got to have a little time to myself yesterday (SHOCKING!!!), as Jorge's Mom watched Alex for a few hours in the day.
Well, I've just heard Alex wake from his nap, so I'll close for now. I hope you're all doing well & enjoying your summer. Take care!
Love,
Amy, Jorge & Alex

Wednesday, June 11, 2003 1:58 PM CDT

Good Afternoon!
I just wanted to let everyone know, as you've probably already assumed, that Alex is back home now & doing great! He was discharged late Friday afternoon & we got him home around 6pm. He was happy to be home again & to see the kitties! :) By the time he was discharged, Alex was only receiving Tylenol for pain & he now needs nothing! He is such a little trouper & truly our little Hercules. He just amazes me with his ability to just bounce right back. It really puts things in perspective, as far as the things I used to deem "annoyances" in life. I've dealt with nothing compared to Alex. Anyway, we're home & doing really well. Alex doesn't have any mobility of his own right now so when we're at home, we all spend a lot of time on the floor. He doesn't fit into his high chair because of the bulkiness of the fixator, so he gets to sit on the floor & eat, which he loves. Since he doesn't have any mobility, I try & take him out a lot so that he (and I!) doesn't go stir-crazy. We spent Sat. at home but did take him out for a walk in late afternoon. Sunday we went over to Jorge's parents for lunch. Then Mon. a.m. I took him to the playground where we meet up w/the Moms & kids from our ECFE playgroup now that the playgroup is over. We all thought it would be nice to still get together once a week. Anyway, that went pretty well, though Alex hated not being able to get down & play. I did help him go down the slide a lot. And since he doesn't fit in the baby swings w/his fixator, I put him on my lap & we did some swinging together! Yesterday (Tues.) Alex had his first check-up w/Dr. Dahl post-op. He said everything looks great & I agree. This morning Alex & I went to the MN Zoo to meet up w/some friends. There was Jen w/her 2 boys Johnny (3) & Tommy (18mos.), Cindy w/her 3mos. old Stevie & Jill w/her 18mos. old triplets, Lauren, Bryn & Noah. We had a lot of fun! This afternoon Alex & I have some errands to run. I believe it's supposed to rain the rest of the week, so we're going to take advantage of this semi-nice day (it's cool & cloudy). Tomorrow we may rent a movie! :) I want to thank everyone for all of your thoughts & prayers during Alex's surgery--and always! It means so very much to us. And we always LOVE to hear from you all! Have a great day!!!!

Love,
Amy, Jorge & Alex :)

Wednesday, June 4, 2003 8:50 PM CDT

Good Evening everyone,
I just wanted to give you all a quick update on Alex's surgery today...
First of all, everything went great! We arrived at Gillette Children's Hospital in St. Paul at 6:15am & they took Alex in to surgery at around 7:30. I actually got to go into the O.R. with Alex this time to hold him while they gave him the anesthetics to make him sleep. Out of all of his surgeries, this was the first time I've done that. My heart was pounding right out of my chest! I also had the pleasure of wearing a big white jump suit that made me look like the Stay-Puff marshmallow man, along w/the little hat & mask. Anyway, Dr. Walker, the surgeon that was going to work on Alex's left foot decided last night that Alex's foot was looking so good after the recent serial casting that he did not need to do surgery on it. Instead, while Alex was under anesthesia, Dr. Walker was able to do a much closer evaluation of his foot, using special x-ray instruments & then had a mold made of Alex's foot in order for a new brace to be made. At the end of the surgery on Alex's right leg, Dr. Walker put a full-leg cast back on Alex's left leg, which will stay on for an additional 3 weeks, after which Alex will wear the brace. A much better alternative to surgery!! Now, as far as the right leg goes, that went really really well. Dr. Dahl did a great job. I have to tell you though, this fixator is HUGE!!! It is so incredibly bulky, but we will learn to make-do with it! Anyway, Alex now has 5 pins going through his leg bones, 3 above his knee & 2 below. Then he also has a pin going through his foot. Then attached to these pins are carbon-fiber rings & hinges. We will need to adjust the hinge on his foot by hand each day w/a wrench. This is to stretch the tendons to realign Alex's foot properly. The hinge on his knee however has a motor attached to it which will automatically stretch the tendons behind his knee 2.5mm each day. We are really thankful that Dr. Dahl could attach the motor. If he wasn't able to, we would have had to do it manually w/a wrench every six hours, including during the night. Alex has been sleeping through the night for eons, as have we, so I think we all would have been unhappy little campers to have to be woken up at night to do the adjusting. Thank God for technology & little battery-powered motors! Now, the actual stretching part of the tendons should only take about 4 weeks, at which time his leg will be straight for the first time in his life. However, after it is straightened, the fixator will remain on & his leg will remain in that straight position for another 3-4 months, with the fixator being on a total of 4-5 months. If it is taken off any sooner, there is a great chance that the tendons will just snap back to the way they were before, which of course is not what we want. This thing is very bulky & will take some getting used to, but we are already making-do, and our Alex--our little Hercules--is already handling it like a champ. He is already talking again & was asking for his cup (sippy) soon after he was out of recovery. The anesthesiologist was astonished at how quickly Alex bounced back after being under for so long & being operated on. He was in the OR for around 4 hours. Tonight for dinner he wanted hot dog & Cheerios & you'd better believe that's what he got!! And a side of milk to go with it. He is now sleeping soundly & will hopefully do so through the night without too much trouble. I am staying at the hospital with him. Oh, they did have to do one other small little procedure to Alex's right leg. Due to his leg being bent for so long, it also caused a little tightening of the hip flexor tendon to tighten, so they made a small incision in his hip & did a release of that tendon (meaning they lengthened it). It's just a little incision not even an inch long. That is the only actual incision on Alex. The rest are holes! Freaky, huh? Again, if you didn't get a chance to before, you can check out Dr. Dahl's website to get more info & to see pictures of the fixator. The website is as follows:
www.limblength.com
Click on "case studies" & then click on "contractures". What Alex had was a right knee contracture. You can also click on "the Ilizarov method" as that is what was used. Dr. Dahl assures us that Alex will be crawling & moving around again in no time, an along with that movement he will also be tearing up our hardwood floors w/the fixator. I am going to ask Jorge's Mom to make some special covers for the fixator to use at home so that doesn't happen! Dr. Dahl's nurse gave me a sample for Jorge's Mom to follow. Alex will probably be discharged from the hospital on Friday they think. I don't know if I'll get a chance to do a new journal entry again anytime soon, but I will try.
OH!!!!!! And some MORE SUPER EXCITING NEWS!!!! On Tues. 6/3 (yesterday I guess that was) Alex walked for the first time!!!!!!!!! We were at a PT (phys. therapy) appointment here at Gillette's for pre-op & she (the PT) asked if Alex had tried using a walker. I said no, but heck, let's give it a whirl & MAN!! Once Alex realized what that was for, he was off to the races!!!!! He just walked & walked & walked!!!! He was at a near-run at some points! It was so incredibly exciting & I was beyond proud of him. I was just bummed that I didn't have my video camera! Anyway, there will be other chances & they have ordered a walker for Alex & it will be delivered to our house next week!
OK, I need to get some rest now myself. I (we) thank you all for all of your continued thoughts and prayers. It means so very much to us. You are all very dear to our hearts. Please feel free to sign the guestbook or email me at shadyoak@hotmail.com
Thank you & God bless you all!
:)
Much love,
Amy, Jorge & ALEX aka Hercules

Friday, May 30, 2003 12:43 AM CDT

Hello Everyone!
As usual, it's been ages since I updated Alex's page. Sorry! And unfortunately I won't be able to write much now, as Alex will be waking up at any moment from his nap. Then we'll be having lunch & afterwards be going to see the new kids movie "Finding Nemo" at the theater. I'm excited about that! I think Alex will love it! I wanted to let everyone know, however, that Alex will be having surgery #12 coming up next Wed., 6/4. This will be on his left foot & right knee/foot. He will be having something called a "fixator" put on his right leg & foot. The doctor that will be working on Alex's right leg is Dr. Mark Dahl. If you would like to learn more about the fixator & Dr. Dahl, please go to the website listed below. Dr. Walker will be working on Alex's left foot. They expect the surgery will last roughly four hours & Alex will be in hospital 4-5 days. This will be the first surgery not performed at the University of MN. This surgery will be performed in St. Paul at Gillette Children's Hospital. Alex will be in a cast on his left leg for 8 weeks after surgery & the fixator will be on his right foot & leg for a minimum of 4 months, after which he will have a cast on his leg for some additional weeks. You have probably seen or seen pictures of a fixator on adults. Alex will have pins going through his bones & then on the outside there will be a "scaffolding" of metal or graphite rings. Again, for more info, or to see pictures, please go to the website below. This surgery will hopefully be the surgery that will finally enable Alex to walk on his own. He can pull up on furniture & walk along that, but due to the left foot & more so due to the fact that his right leg is shorter than his left, he's unable to "free-walk". Alex is more & more of a joy every day!! He truly is becoming a little boy!!! His vocabulary is expanding every day it seems! You can tell he really comprehends everything!! Memorial weekend the 3 of us drove down to Lee's Summit, MO to visit my brother Brian & his family, Christy, Brielle & Avery. Brielle is now 3 1/2 & Avery just turned 1 on 5/18. We all had a great time while there! OK, I've just heard Alex wake up so need to close. I hope you're all well. Please continue to sign in on the guestbook. I love to hear from you. I will try to get some new photos on the webpage this weekend. Again, the website for the fixator is below. To see some pictures of what they'll be doing for Alex, click on "case studies" & then click on the section with the word "contracture", as that's what Alex has---right knee contracture. Take care!

http://www.limblength.com/

Much love,
Amy, Jorge & Alex

Sunday, April 6, 2003 7:55 PM CDT

HI Everyone!
This is going to be a brief update, but an update none-the-less! We've been busy here in Minnetonka. We had some nice warm days last week so Alex & I took advantage of that & went on a lot of nice walks! We frequently walk with my friend Jill, whom I met last year & lives around the corner. Jill & her husband Tim have 15 month old triplets! 2 girls & a boy, Bryn, Lauren & Noah.

I took Alex to his first movie a couple of weeks ago. We went to see "Piglet's Big Movie", and Alex absolutely LOVED it!! He was soooooo cute & a perfect angel the entire time! It couldn't have gone any better, and I wished that I had had my video camera to record how incredibly cute he was being! He sat in his own big cushy velvet chair & loved having the space!

I've been taking Alex to doctors (Dr. Walker--his lower extremities ortho surgeon; and Dr. Dahl--also an ortho surgeon & he is new to us.) during the last 3 weeks. We're discussing the next surgery that is on the horizon for Alex. As of now, the surgery is set for June 4. This surgery will be on Alex's left foot, as it's turning in again & will be a much more detailed & serious surgery than the past 2 on that foot have been. This will be Dr. Walker's portion of the surgery. Dr. Dahl will be fixing Alex up with something called a "fixator" on his right leg & foot. It is difficult to explain without pictures but I'll try & give you the jist (sp?) of it. Alex will have pins going through his leg bones, both above & below his knee. Attached to those pins will be 2 hinges on the knee. Then, attached to both the pins & the hinges will be graphite rings. This is all on the outside of Alex's leg, mind you, so he will have a full scaffolding thing going on around his whole leg. Then behind Alex's knee will be a battery-operated motor that will stretch Alex's leg 1mm per day. The eventual outcome of this (hopefully) is that Alex will finally be able to straighten out his right leg, leaving him no longer with one leg shorter than the other. Dr. Dahl is also going to incorporate Alex's right foot into this fixator as well. The reason for this is that, while stretching out the muscles & tendons behind his knee, this will cause the heel-cord (Achilles tendon) to tighten, therefore no longer enabling Alex to flex his foot. As you know, Alex already has enough problems with that foot & we don't need to add more to it. I am not sure if there will be a pin going through his foot or not. We have another appointment with Dr. Dahl this Thurs. 4/10 that Jorge is also going to be attending for a pre-op consult. Now, we may decide to wait on the fixator for a variety of reasons. In one way, we want it all to be done at once so that Alex will only have to be put under anesthesia one time as well as only having to undergo 1 recovery period. The thing that I am hesitating about is, though the eventual outcome of the fixator being attached is to allow full mobility of Alex's right leg, initially after the surgery, Alex will not be able to bend his knee at all. It will be fixed in place. Alex has become much more mobile in recent weeks, with pulling up to tables, etc. & "cruising" along them & side stepping. I don't know, I guess I'm just frustrated that once again, as soon as Alex starts to make progress, another surgery comes up & puts him 2 steps behind again. I just have to remember that in all previous surgeries Alex has come out flying & he's such a resilient little guy. But I'm extra hesitant on this one. Alex sits in a way that's called "W" sitting, where he sits with his knees bent & his feet behind him. He has trouble sitting in other positions due to his right leg not being able to straighten out, as well as his scoliosis, which puts him off balance. With the fixator, at least initially, he would not be able to sit like that. I'm also afraid he wouldn't be able to pull up to standing or crawl. But I have to remember how strong he is & that he's managed to crawl before, even though he had casts on both legs as well as one arm. Anyway, that's where we are with that. As far as the left leg goes, Dr. Walker wants him to wear & have weekly cast changes for 3-4 weeks PRIOR to surgery to try & get his foot in a better position before surgery. Post-surgery then he would wear a cast for 8 weeks. Is my little boy ever going to have a summer in which he doesn't have to wear casts????

My parents are coming up to visit this Tues. the 8th, which I'm really looking forward to! Usually they come up to visit for Easter but this year they have a commitment so are coming early. They will be here Tues.-Fri. I'm hoping they'll come along with Alex & I to his Baby Storytime at the library that we are still doing on Wednesdays from 9:30-10am, as well as to Alex's ECFE playgroup on Fri. from 9-10:30am. I think it would be fun for them to see him interacting with other children & just to see what Alex & I do each week among other things. We also plan on going down Shady Oak Rd. to Hopkins to all of the antique shops. The weather is to be sunny & around 50, so not bad walking weather!

Well, I guess this update was a little longer than I thought it was going to be! Lucky you! :)
I hope that you are all doing well & enjoying the spring that is upon us! Thank you so much for your continued thoughts, prayers & support. Know that ours is there too!

Much love,
Amy, Jorge & Alex

Tuesday, February 25, 2003 3:13 PM CST

Hello!
You're probably wondering what the Molina's--or at least Alex!--have been up to. Trying to stay warm, for one! Since the last update Alex has had his post-op check-up with the surgeon that did the palate repair, Dr. Buckley, and everything looks great! Alex is scheduled to see her again in 2 weeks to further check up on it. We continue to have the PT & teacher (Lynne & Sue) come to our house to work with Alex every Thurs. morning. Luckily, Alex really likes both ladies! Alex has also been busy going to Baby Storytime at the local library every Wed. a.m., though the winter session just ended last week. The spring session will begin again mid-March. On Friday mornings Alex & I go to play group from 9-10:30am. Alex really enjoys all of these activities! Other than those things, Alex & I have been having a lot of fun around the house playing or maybe going to the mall & "people-watching". The other day we went to Eden Prairie Mall & they have this great play area for little ones, with slides & things to climb on. It was actually our first time to the play area. Alex absolutely LOVED it!!! While there, I happened to run into a woman that I had been in the hospital with when I was hospitalized for the post-partum depression. She was there with her youngest daughter. Small world, huh? Yesterday I was to go on a "girls night out" with a few girlfriends to see "My Big Fat Greek Wedding", but instead Jorge & I got quite a scare! Yesterday when I changed Alex's diaper I noticed that he had some tomato-colored sparkles on & around his wee-wee(he's going to love that I told everyone this when he's about 15). It seemed to be getting worse throughout the day, so I called his pediatrician. She suggested we go to the ER to have a catheter inserted to get a urine sample. We were worried that it was either his kidneys or his liver. After 6 hours in the ER (RIDICULOUS!!!), a urine sample & blood sample, all they could tell us was that his platelet count was way high (in the 800,000's) & that they were worried it was his liver or kidneys. They were completely mistified by the orange crystals. Oh, and that Alex should be admitted. You know that you've been at the hospital too many times when you go into Alex's room & on the big white-board the nurse has written "Welcome Back Alex!!". :) But, luckily, it was the same nurse that had taken care of him 2 weeks ago after his surgery & she is just the greatest. Anyway, to make what could be a really long story short, they say the only problem Alex had was that he was dehydrated & constipated. This is rather baffling to us, as Alex is constantly drinking water from his sippy-cup. Alex stayed over night, as did I, and after another urine analysis & blood test, he checked out & was discharged at around noon today. Very very strange. We are just very very thankful that it ended up being something so minor & ended with such a brief stay. We are truly very fortunate!!!
Other news...we found out at Alex's last appointment with his leg doctor (2/18), Dr. Walker, that from
mid-foot up to his toes on both feet, Alex's bones are growing at a curve to the right. Alex will need more surgery on both of his feet. Alex & I meet with Dr. Walker, as well as another doctor, Dr. Dahl, on 3/18 about the feet as well as the right knee, as that has still not straightened out 100%. Hopefully this will all come to an end someday & Alex will be able to get on with his little life! Dr. Walker wants to do the surgery in the next 3-6 months. Jorge & I would like to take Alex on a family vacation this summer, if we can afford it, to someplace warm with an ocean. We have to try & figure out where that would fit in with the surgery.
We hope that you're all well & staying warm. Please continue to keep us in your thoughts and prayers. Our little guy needs all the help that he can get.
Thank You!
Love,
Amy, Jorge & Alex

Monday, February 10, 2003 12:47 AM CST

Hello Everyone,
I just wanted to update you on Alex's cleft palate surgery he had on 2/6. The surgery itself went fine. But upon coming out of anesthesia & receiving pain meds, Alex had some difficulty & nearly stopped breathing twice, once being so bad that the anesthesiologist thought they were going to have to perform CPR. But, Alex came out of it OK. Because of the difficulties however, Alex had to stay in hospital longer than anticipated. The surgery was on Thurs. & normally he would have come home on Fri., but did not get discharged until yesterday (Sun. 2/9--same day he turned 17 mos.). He was in the ICU (Intensive Care Unit) for Thurs. & Fri., and was transferred to a regular unit late afternoon on Friday. I stayed at the hospital with him all days & overnights during this time. He's now at home & feeling much more comfortable in his home surroundings & with the kitties. Alex has to wear arm restraints for 4-6 weeks, although not when we are with him every second. It's a precaution for when we're not there, so that he does not stick his fingers or anything else in his mouth & break open the stitches. He's not our usual bubbly Alex, but hopefully that will get back to normal soon, as the pain subsides. He's on Tylenol-3 (w/codeine)right now. Alex also has to eat pureed food for 4 weeks, then lightly textured foods for 2 weeks after that. He cannot use his bottle, which has been a source of anger for him, as he still got a bottle 1st thing in the morning & after his nap. We've been having to put his milk in through his tummy tube (G-Tube) because he doesn't want to drink the milk from a sippy cup. He will however drink some water from a sippy cup. The first couple of days in hospital he could only receive IV fluids, then was on a clear liquids diet Sat. & Sun., though Sun. he got to have some custard & applesauce, which he liked, especially the custard. We thank God that the surgery itself went well & that the surgeon was able to fix the palate in one surgery. We also thank God that Alex's difficulties were not greater & that he was able to overcome them. We pray that he continues to get better each & every day & that soon he'll be talking up a storm & laughing like the little Alex that we know. Thank you to everyone for all of your thoughts & prayers.
Love,
Amy, Jorge & Alex

Monday, January 27, 2003 at 01:03 PM (CST)

Hi Everyone! (new photos too!!)
This is going to be brief because Alex will be waking up soon. BUT, I wanted to let you know a couple of things:
1. Alex's cleft palate repair surgery has been moved up to Feb. 6 @ 9:30am (NEXT Thurs.) instead of Feb. 18. It will also be with a different surgeon, Dr. Claire Buckley instead of Dr. David Hamlar. We were not happy AT ALL with the job that Hamlar did on Alex's lip, so, with some help from my father-in-law, Dr. Molina, we found a FANTASTIC pediatric plastic surgeon (Dr. Buckley) who, for the past year, has done nothing BUT ped. cleft palate repairs & is one of the TOP people to do it. I have also met her and she is extremely nice & patient, unlike Hamlar who always had one foot out the door when you tried to ask him questions. So, we will have the pre-op consultation this Friday (1/31)with Dr. B to find out the whole scoop on what will transpire as well as feeding methods post-op. We are VERY excited that we got Alex in w/Dr. B and, though you never want your child to have to undergo more surgery, we are also excited about this one, as it will allow Alex to speak! Also, on a side-note, Alex is taking a lot of steps now!!!! HOORAY!!!!!! I always knew he could do it. And he's sure showing the people that didn't think he could!! THAT'S MY BOY!!!! He cruises all around the tables & whatever else he can pull himself up on. He'll be walking before we know it. Then we'll want him to slow down! :) Anyway, we are absolutely THRILLED with the progress Alex is making!
OK, the #2 thing I wanted to tell you is, there are finally NEW PHOTOS ON THE PHOTO PAGE!! Check 'em out!
Please keep Alex in your thoughts & prayers for his upcoming surgery, as well as his continued progress into Toddler-dome! We thank you & love you all!
Love,
Amy, Jorge & Alex
:)

Wednesday, January 08, 2003 at 12:34 PM (CST)

HAPPY NEW YEAR TO ALL!
Well, our new year has been great so far & we hope that it's the same with everyone else!
We had a great time down in Shenandoah with my family for Christmas. It's always so special to get to be with family for the holidays. Jorge came down to Shen. on the 24th & then we drove back up to Mpls on the 26th, as Jorge had to work on the 27th, poor guy! That weekend then we went to Jorge's parents & had a little Christmas with them which was really nice as well! New Year's eve was spent just the 3 of us at home relaxing & then on New Year's day was spent at Jorge's parents with his whole family having the annual seafood lunch of lobster, shrimp, & scallops. YUMMY! This was Alex's first taste of seafood & he liked it! I hope this isn't a sign of his tastes to come!!! Could get spendy! We have been having a pretty relaxed New Year thus far. This week Alex & I start back at our ECFE (Early Childhood & Family Education) class, which is essentially a play-group for Alex & which he really likes! This session will run through the end of May & is made up of kids up to 24 mos. in age & their Moms. We meet every Friday for this from 9:00am-10:30am. Then next week Alex's winter session of Baby Storytime starts at the local library. This is also the same agegroup of kids & this meets every Wed. from 9:30am-10am. Alex really likes both of these groups & I really like that he's getting a chance to hang out with more kids & learning to socialize! Jorge has been really busy at his job, but we're hoping now that year-end things are done it will slow down a bit. Yesterday & today the weather has been GORGEOUS!! In the 50's which is truly bizarre for us, so yesterday Alex & I went on a walk with our friend/neighbor Jill, who has year-old triplets Lauren, Bryn & Noah. It was great! We only had to wear fleece pullovers! We hung out at their house for a while afterwards & another neighbor stopped by there with her 13 mo. old son, so Jill's house was quite the activity central! Today I was hoping to get out for another walk, but I have a follow-up appt. with the doc that did my deviated septum repair a month ago, so I'm not sure if we'll have time. I hope we will, because I believe the hight temp for tomorrow is supposed to be 19!!!!! YUCK!!! Well, I've just heard Alex wake up from his nap a little early, so I'd better close this. Now, I know the pics on the photo page are really old. I promise I'll update those before next week, so please stay tuned!! I think I've got some great pics on the digital camera from the holidays! Hope you're all doing well! Please sign the guestbook when you visit. I love to hear from everyone. Take care & God Bless!
Love,
Amy, Jorge & Alex

Monday, December 23, 2002 at 01:45 PM (CST)

Gosh! I know it's been forever since I've updated this & I apologize! We've been quite busy! Let's see, I guess I'll start with November.
As you all may or may not know, Alex's surgery on Oct. 24 went really well & we brought him home from hospital on Oct. 26. He had casts on his right hand, right leg & left leg. The cast on his left leg was changed every week until he finally had both leg casts removed on Dec. 10th. The right leg cast remained on the entire time. Alex got his arm cast off on Nov. 14. It wasn't to come off until the next week, but Alex had discovered he could pull all of the "stuffing" out of the cast with his teeth (YUCK!) so I actually had the leg doctor, Dr. Walker, take the cast off a few days early. It was good for all of the moisture to be getting trapped down in the cast. The skin grafts were looking really good and healing really well. On Nov. 15th Alex started a "play group" through the local ECFE (Early Childhood & Family Education). It runs every friday from 9am-10:30am. Alex really enjoys it! His group is made up of kids up to 24months. All of the Moms are there as well. The first 1/2 hour is just the kids playing with one another & the Moms just chatting w/one another; the 2nd 1/2 hour is Moms "sharing" time & the Moms go to a table & discuss a topic, i.e. feeding issues & during that time there are 2 teachers that play with the kids & keep them occupied so that the moms have a chance to discuss things; then the next 10 min. is snack-time & the kids come over to the table; after that, the last 20 min. is song & story-time. It's really really nice! We just got signed up for the next session which will begin the end of Jan. & run through May. It's really nice because each session will be the same kids/moms.
Towards the end of Nov. Alex had a 4-day stint of having a fever, up to 102.4. I took him to the doctor (and of course his fever ran normal then!) & she said he must just have a virus, as his white count & throat culture were normal. After those 4 days he was back to normal!
On Nov. 20 I had my own pre-surgery consult in preparation for the surgery that was coming up on Dec. 5 to repair my deviated septum. The consult went really well.
On Nov. 25 Alex had an appointment with his spine specialist, at which he had some new x-rays done of his spine. It looks much better! The curvature in Aug. had been at 46 degrees & at this appointment it was at 34 degrees. A very significant improvement!! Alex proves the docs wrong all the time! Also on this same day I took Alex to an orthotics lab to be molded for a new scoliosis brace, as he had outgrown his old one. I really liked this lab a lot more than the place he had his first brace made.
The next day, Alex's teacher's daughter came over to babysit during the day as part of her confirmation hours. This was the first time I'd had a babysitter for Alex!! At first I didn't even know what to do with myself! I just sort of stood there. But eventually my brain cleared & I went to the scrapbook store to work on my Christmas cards. I love Alex more than life itself, but I have to say it was nice to have a little break!
The 28th brought Turkey Day & we spent that at Jorge's parents house, stuffing ourselves to maximum capacity! It was a fun day & everyone loved getting to see Alex.
Dec. 4th brought Alex's fitting for the scoliosis brace, followed by an appointment with the spine doc, Dr. Perra, so that he could see Alex in the brace. Everything went really well, and Alex didn't seem to hate it too much once he finally got it on.
Dec. 5th was my surgery date. It was a same day surgery, so Jorge & I dropped Alex off at Jorge's parents & then Jorge came w/me for the surgery. It took about 2 hours & then I was in recovery for about 1.5 hours, after which Jorge took me home. We actually went to his parents for Thurs., Fri. & part of Sat. as I was not supposed to do anything & wasn't supposed to lift Alex for 2 weeks. All I did for the entire time there was lay down, sitting up with a big ice pack on my face to try & keep myself from bruising. Jorge & his parents were a huge help. Alex wasn't too traumatized by the look of his Mommy, thankfully. I just looked a little weird with a splint across my nose. We went back to our house on Sat. & then on Sun. my parents came up to help from Iowa, which helped a TON as that next week Alex had a bunch of doctors appointments & I had my post-op appointment as well. Grammy & Papa carried Alex all around for me to the appointments. Alex did have trouble understanding why Mommy wasn't picking him up though. I've healed wonderfully, with no bruising or swelling on the outside that anyone other than myself or the doctor can notice. There is still some swelling on the inside, so it's still a little tough to breathe, but that has been getting better every day & will continue to do so until, hopefully, I'll finally be able to breathe like normal! The doctor did a GREAT job!!!! On Dec. 12, Alex & I rode down to my hometown of Shenandoah, IA with my parents & that is where we are now! Today is the 23rd & Jorge will be coming to join us tomorrow, as will my brother & his family. It will be a very fun Christmas! It will be awesome to see Jorge again, as I've missed him & so has Alex. Whenever I tell him "Daddy will be here soon" he looks all around for him! I know Jorge has missed us as well, especially Alex.
Alex has been busy motoring all around now that he's finally cast-free. He crawls everywhere & gets into everything! At the Oct. 24 surgery they didn't get Alex's right knee to straighten out completely, so he still isn't walking. But he is trying to stand. He pulls up all the time onto his knees. It's just hard for the little guy to stand, because his legs--since he can't straighten the right knee--are two different lengths. But he's still trying & we work with him a lot on it. He'll get it eventually. He's only been cast-free for 2 weeks! He's such a strong little boy, I know he can do it. He sure wants to & gets frustrated when he can't. He is such a determined little boy with such drive & never lets anything get in the way of what he wants to do, so he'll overcome this in time & then we'll wish he'd slow down! :)
Alex will be surgery-free until Feb. 18 at which time he will have his cleft-palate surgery. I don't know a lot about this surgery but I have a pre-op consultation set up with that surgeon at the beginning of Jan., so I will find out a lot more at that point.
We have been busy down here visiting people, me showing Alex off, etc. It has been a lot of fun with Grammy & Papa. Like I said before, Jorge will be down tomorrow & then we have to drive back up on the 26th as Jorge has to work on the 27th. I hope that this holiday season finds you all well! Sorry about it having been so long since the last update. I will try to do better in the new year & will also get some updated pictures up on the site once I get back home. Happy Holidays & Happy New Year to everyone!
Love,
Amy, Jorge & Alex

Wednesday, November 13, 2002 at 01:06 PM (CST)

Well, Alex just woke up so all I can write now is we're all doing great & there are new pics on the photo page. Check 'em out!!
:)
amy

Saturday, October 26, 2002 at 01:27 PM (CDT)

Hi Everyone!
Just wanted to let everyone know that Alex's surgery went well. He stayed Thurs. & Fri. in the hospital & we got to bring him home this morning at about 11am. We are SO happy to have him home!!
There has been a change in his cleft palate surgery. It had been scheduled for 10/29, but the orthopaedic surgeons decided they didn't want it so soon, in fear that there might be too much swelling then from the fluids he would get during surgery. This could possibly cause circulation problems under his casts, which are on his right leg, left leg & right arm. The surgery is now scheduled for Jan. 14.
So, that's what's happening with us. Can't write more right now, as Alex will be waking from his nap at any moment. Hope you're all well. Thank you for any thoughts & prayers you have given!
Love,
Jorge, Amy & Alex

Thursday, October 17, 2002 at 01:29 PM (CDT)

Hi Everyone!
This is going to be a really short journal entry because Alex will be waking any minute, but wanted to keep you updated on his goings-on...
This weekend the 3 of us are going to be driving to Duluth, MN for a short family vacation before Alex's next surgery. We'll be staying in a 2 BR cabin right across the street from the North Shore of Lake Superior. Should be gorgeous!

Alex will be having surgery one week from today, which will be Oct. 24. This surgery will be on his right hand, right knee, right foot, and left foot.

Then we just found out yesterday that Alex will be having his cleft palate repair surgery on Oct. 29, just 5 days later. Poor little guy.

I hear Alex now, so have to close. Hope you are all doing well. We love to hear from you.

Love,
Amy

Friday, October 04, 2002 at 12:18 PM (CDT)

Good afternoon to all!
I hope your weather is nicer than ours. We've been having a LOT of grey days & rain. It's supposed to rain all day today I think. Then with the temps only being in the 50's, it makes for a chilly day! Anyway, here's what the Molina family has been up to since I last updated this on 9/17:

Alex had his 12 mo. check-up on 9/18. He got his vaccinations, including his chicken pox one, and he checked out A-OK!! Aside from his physical limitations, he is right on track for his age! Alex also started his Baby Storytime at the local library on this day. He really enjoyed it, and so did I! We read 3 books & sang lots of songs! The storytime is about a half an hour, and then the reader comes in with 2 laundry baskets filled with toys & dumps them on the floor & the babies get to have a free-for-all for about 15 min.! It's a lot of fun! There's a toddler storytime after that, so then we have to cruise out of there. We get done at about 10:30, so that gives us just enough time to get home so that Alex can have a bottle before nap time. He naps each day from 11am-1pm. Baby Storytime is each Wed. up until Oct. 23, the day before Alex's next surgery. The next storytime session isn't until winter then & sing-up begins on Dec. 16. We'll be there! It fills up quick, so I'll have to be on top of things to get Alex in!
On 9/21 Alex had his first swimming lesson! It's through the community center & the lessons are held at the local Jr. High, which is only about 1 mile from our house, which is really nice. Alex & I went alone to this first one, but Jorge came with on the next one & will be with us for the subsequent ones. It's every Sat. from 8:45-9:15am with the last class being on 10/19. Alex really likes the water! It's a lot of fun for us. There are about 10 babies in the class, plus their parents or parent, so it's pretty big class!
On 9/27 I took Alex to JCPenney's for his 12 mo. portraits. I had some taken of him in his Halloween costume, as well as in his regular clothes. I think they are going to be really cute! The pictures will be ready for pick-up on 10/22. I also ordered the Smiles By Wire, which are the portraits on-line that I can email to people. If you would like me to email them to you, please email me at shadyoak@hotmail.com & in the subject headline, please put "Alex's 12 mo. pictures". I have a junk-mail filter on my email & if emails come in from addresses that are not in my address book, they go automatically into the junkmail folder. I do, however, check this folder for mail from people I know, so if you put that headline in the subject line, I'll know it's from someone I know.
Sept. 30 I had a dentist appt. with my new dentist (when Jorge changed jobs I had to change dentists) and Alex went with me. It was just a cleaning, and Alex did remarkably well! As long as he had his crackers, he was content. One of the receptionists did come in towards the end & picked him up--not because he was fussing, but just because she wanted to hold him! I have a filling coming up in a couple of weeks, so I think I'll see if our neighbor Berniece can watch Alex for that because I think that will take a bit longer. Alex also had a doc appt. that day, this one with his leg/foot orthopaedic surgeon, Dr. Kevin Walker. Dr. Walker took a look to see how well Alex's leg braces were working for him as well as to discuss Alex's upcoming leg/foot surgery. It was decided that the brace was working on Alex's right foot, but not so much his left foot. So, Dr. Walker had a cast put back on Alex's left leg & foot. This cast will be changed weekly until the time of his surgery on 10/24. As far as the surgery goes, Dr. Walker is going to be lengthening the hamstring on Alex's right leg, at which time he'll see if that is enough for Alex's leg to get full mobility. If it's not, then he will also be doing something to the capsule behind Alex's right knee. Dr. Walker will also be removing the big skin tag off of Alex's right foot at which time he will also be looking at the bones between the heel & toes, roughly the outside ankle area. He will then decide if that needs some work done to it as well. Then, on Alex's left foot, Dr. Walker will be separating the big toe from the toe next to it. He will also take a look then at how well the casting has been doing in getting range of motion back to Alex's left foot. If the casting has done a good job, then Dr. Walker will do a smaller procedure in lengthening the achilles tendon. If the casting hasn't done such a good job, he will still be lengthening that tendon, but he will have to go in a little further & do a more involved procedure. So, 10/24 will be a big day for Alex's leg & feet. We hope that this will fix the leg so that Alex can straighten it out & lead to eventual standing. He hasn't been able to thus far, because he cannot get his right foot on the ground. Alex will also be having surgery on his right hand again that day, done by Dr. Ann VanHeest. She will be separating Alex's pointer finger from the middle finger & will be doing some skin grafting in between them. This will be the first time that Alex will have all 5 fingers. He has enough bones for 5 separate fingers, but the pointer & middle fingers only have the first digit in them & the ring finger only has the first 2. But at least he will have all 5. We just hope & pray that as Alex gets older the kids will not be cruel to him. We know how kids can be sometimes to children that are different. Alex's charm & humor will win them over though!
We got the results back finally (just yesterday) from Alex's 2nd biopsy of the spot on his right foot on 9/16. It's something called Nevus Sebaceous, which is normally found on the face or scalp, so it's in a very atypical spot. I had had them do an excisional biopsy since they made us come in a second time & they got all of it out. They did say however that it is not uncommon for them to reoccur. But, it is benign & ALWAYS benign, which needless to say is very good news.
Yesterday, 10/3 (can't believe it's Oct. already!!!) we closed on our refinance of our house. We had been paying 12% & now we are going to be paying 6%. What a relief!!!!!
So, what's coming up for our little guy? Let's see...
10/8 will bring the first cast change of the cast on Alex's left leg. He has a purple one on now. I think maybe next week we'll go for blue! The next cast change will be 10/15. Sometime in this time before the surgery, Alex will have to have a pre-operative consult with Dr. VanHeest. I put a call into her nurse yesterday & am waiting to hear back from him. On 10/23 Alex has his pre-operative physical with his pediatrician. Then the next day he has his surgery.
We'll keep you posted on everything! Hope all is well with everyone! Please let me know if you'd like his 12mos. portraits!
Take care!
Love,
Amy, Jorge & Alex

Tuesday, September 17, 2002 at 12:55 PM (CDT)

Hello (finally!) Everyone!
Well, I am going to try & update this as much as I can before my little guy wakes up from his nap.
I hope that this summer is finding you all well & that you are all having fun! Let's see, where shall I start....
Alex has been having a busy, fun summer. His latest surgery was on June 18, which was on his right hand & right foot. The last cast from that operation was removed on Aug. 19, at which time Alex was fitted for & received his little leg braces. They come up the back of his shin & over his heel & the bottom of his foot. He wears them with socks & doesn't seem to mind them, although we get annoyed by them because the left one is constantly coming off & therefore we're (I'm) constantly having to put it back on again. OK, let's backtrack to July & try to update things in somewhat of a sensical order...
Alex turned 9 mos. in July & therefore it was portrait time again. We go to JCPenney & have been really happy so far. Alex did a great job & the pictures turned out great! I believe I emailed them to you all, but if you did NOT get to see them, please email me right away at shadyoak@hotmail.com & I will email them to you. I only have a few days left in which I can access them, so it's important that you let me know really quickly.
Throughout July, Alex's physical therapist Lynne was on break but his teacher Lori still came to our house once a week to work with Alex. At this age "work" is actually playing, so he doesn't mind it a bit! In August both the teacher & PT had time off so we didn't see anyone. This program is through the school district & Early Childhood Intervention & is free if your child qualifies. It is an absolutely FANTASTIC program!!!!! We are SO thankful for it! The program started up again in Sept. We have Lynne back as Alex's PT, but he has a new teacher named Sue. We really miss Lori, but I'm sure we'll get so that we like Sue just as much.
On July 24 (Pop-Pop's birthday!) Alex went to see a new spine doctor, as we were not at all happy with the level of care that Alex was getting from his previous doctor. We did not really learn anything more as far as his cervical spine goes, so I wasn't really pleased with this visit either. I am trying to track down more info from this new doctor, without a whole lot of success so far. Alex isn't scheduled to see him again until November. I'll keep you posted on anything that I find out.
On July 27 we all packed up & drove to Muscatine, IA for Brielle's (Alex's cousin--my brother's oldest girl) big 3rd birthday party. We all had a great time! We met up with, of course, my brother's family, as well as my Mom & Dad. The party was held at Brielle's great-grandparent's (Christy's grandparents) house, which has a beautiful view of the Mississippi. We stayed down the way from them at a motel along with Mom & Dad. We drove back home on Sunday after breakfast at the "party house". We really had a nice time & it was so nice to have to whole family together again. It was a beautiful drive as well!
July 29 (my birthday!) Alex was at Gillette Children's Hospital to see Dr. Walker for a cast change, xrays & to have his back brace looked at. We were there from 8:30am-3pm, so it was NOT a good day. You can be assured that the hospital mgmt got an earfull from me, as the appointments were to only go until noon at the latest.
July 30th Alex was to have another MRI done of his spine at Fairview University hospital at 8am. He got bumped twice(meaning that 2 people "cut in line" ahead of him) by emergency cases & by the time they got him in it was 10am. He hadn't eaten anthing since 7pm the night before, so he was a BIT crabby! (you aren't supposed to give him food before an MRI--I wasn't depriving him!) They gave him his medication to make him drowsy for it, but it didn't work, so all of that waiting around was for nothing. Another MRI has not been scheduled thus far.
Aug. 5 brought another leg cast change at Gillette's as well as making molds for Alex's leg braces. Needless to say, things were done in a much more timely manner this time!
Aug. 9 brought another leg cast change at Gillette's as well as Alex turning 10 mos!
On Aug. 8th Alex had to have his tummy tube replaced, as it was leaking all over the place. He doesn't use it at all anymore & we COULD have had it taken out completely, but since he will have to have his palate surgery some time in the the next 6 mos., we decided to keep it in for a little while longer so that he has a way to eat after that surgery other than us using a syringe in his mouth.
Aug. 19 Alex got his casts off his legs finally & was fitted & put into his leg braces as I mentioned previously.
On Aug. 21st I took Alex to see his pediatrician, Dr. Angela Sidler. In May I had spotted a little thing on the bottom of Alex's right foot & had taken him to see her at that time. She didn't know what it was, but said to "watch" it & see if it grew. Well, then he had surgery & was in a cast for 9 weeks. Once that cast was removed I saw that it HAD grown & that's the reason for this visit on the 21st. She again did not know what it was so referred us to go see a dermatologist.
On Aug. 26 I took Alex to see Dr. Chae, a dermatologist at the U of M. She suspected it might be either a Nevus Sebaceous or an Epidermal Nevus, both of which are benign growths & she performed a biopsy on it. On Fri. Sept. 6 one of the residents she works with called me to tell me it was a Nevus Sebaceous, a type of benign mole & it could be removed at anytime. There will be more about this in a couple more paragraphs...
On Thurs. Aug. 29 Grammy & Pop-pop Beavers came up to visit & to help get things ready for Alex's BIG 1ST BIRTHDAY PARTY!!!, which was on Sat. Aug. 31. Brian & his family came up on the 31st & everyone stayed until the 2nd.
Aug. 31 brought the BIG PARTY! We couldn't have asked for a more perfect day. The weather was GORGEOUS! We had about 30 people here, including children (3 of which were triplets of a friend/neighbor of ours!). I had borrowed a couple of canopy tents from a friend so we all hung out outside & had a great time! Chita & Neto (Jorge's parents) brought a Scooby-Doo pinata, so we hung that up between a couple of trees & the kids LOVED going at that, including Alex! I'll put a picture up of that on this site. We had sandwiches, homemade potato salad, & of course CAKE! Alex REALLY enjoyed himself & didn't fuss one bit!! I think it helped that we were all outside instead of being scrunched into our little house. He LOVED his cake!! I'll put up a picture of that, too. He received loads of wonderful gifts, toys & clothes & we thank everyone for them!! You're too good to us! But of course, Alex is worth every bit!
Sept. 5 brought Jorge & my 4th anniversary. We went out to dinner on 9-13 to celebrate, while Alex's cousin Sandy babysat him. This was our first time having someone babysit Alex! Sandy is just a little bit younger than us & used to own her own daycare business, so Alex was in VERY capable hands!
MONDAY SEPT. 9----ALEX'S FIRST BIRTHDAY!!!! YEAH!!
My how time flies! Alex went to see Dr. Chae (derm.) again to have the stitch removed from the biopsy site. It was then that she told us that she didn't think that the growth is actually a Nevus Sebaceous, though she hadn't even LOOKED at the films from the biopsy, though she wasn't sure what it was.
Sept. 10, Dr. Chae called to say that she had gotten a chance now to look at Alex's biopsy films & to ignore everything that she had said the previous day & that she would like to do another biopsy on the growth. The reason for this, she said, was that she was a bit worried that the samples had gotten switched in the lab, as there were hair follicles & hairs in Alex's sample. She still couldn't tell me what she thought it was. I told her that since we had to make an extra trip in there, that I wanted them to remove the entire thing at the next biopsy.
Sat. Sept. 14 I took Course II of the Wilton Cake Decorating Class at a local craft store. It was a lot of fun!
Sept 16, back to see Dr. Chae again. They did an excisional biopsy this time, removing what they hope is the whole thing. We won't have the results for 1-2 weeks.
Well, that brings us to today! I'll tell you a little of what's coming up. Tomorrow, 9-18 Alex has his 12 mos. check-up w/his ped. He also starts Baby Storytime at the library near here, which should be a lot of fun! 9-21 Alex starts swimming lessons! One of his triplet friends will also be taking the class with him. This should be a blast! I'm really excited about it! I am also looking into some water-therapy for Alex, which would be great for him. The Storytime is every Wed. until Oct. 23 & swimming lessons are every Sat. until 10-19. That's about it for now, and just in time. I hear my little guy waking up.

Hope you're all doing well! And I hope to hear from you soon! Remember, if you'd like me to email you Alex's 9 mos. photos, email me right away about it!! Take care!

Lots of Love,
Amy, Jorge & Alex

Thursday, August 08, 2002 at 12:46 PM (CDT)

OK, everyone. I'm not sure what's going on. When I went to check out Alex's webpage, the journal entry that showed up was from April 24. I can't seem to find the previous journal entries. If anyone has perhaps printed them off of the computer after reading them & still has them, I would greatly appreciate a copy of them! I don't know what's up!! You can send them to our home address:

3534 Shady Oak Road
Minnetonka, MN 55305

Hopefully this is something the provider of this website can remedy. Anyway, I don't have time to type a whole new journal entry, but there ARE new pictures on the webpage!

Hope you're all doing well, and I really hope that someone can help me with copies of the last few journal entries I added. Thanks!
Love,
Amy

Friday, July 19, 2002 at 03:06 PM (CDT)

Hi Everyone!
This is going to be a brief letter probably. But I just wanted you all to know that Alex's surgery back in June went great & he's doing great! He got his cast off of his arm on Monday 7-15 & he loves the freedom! He gets his leg cast changed from a full cast to a cast that is from below the knee downward (a half cast) on my b-day, 7/29. He'll have to wear that for another 4 weeks. They are working on planning Alex's next surgery, which will be to separate the pointer finger from the middle finger on his right hand & to lengthen his hamstring on his right leg, as well as separating the big toe from the toe next to it on his left foot. That will probably be in Sept. sometime. Alex is 10 1/2 mos. old now! Next weekend (7/27) we 3 will be driving to Muscatine, IA & meeting up with my whole family for Brielle's 3rd b-day party. It will be a lot of fun! OK, have to run. Will write more another time...Thank you for your thoughts & prayers!
Love,
Amy, Jorge & Alex

Wednesday, June 26, 2002 at 10:02 AM (CDT)

Hello Everyone!
Well, Alex's surgery went well. The surgery was on Tues. 6/18 & we brought him home on Wed. 6/19. The rest of Wed. went well & so did Thurs. But (pardon my french) Fri., Sat., & Sun. were quite hellish. Alex was not only in pain from his surgery, but he was also cutting another tooth (#4!!), so that made him even more miserable. He wasn't sleeping well at night AT ALL, so therefore we weren't either, and he would not nap during the day. We couldn't understand how, after not napping at all, he couldn't help but fall asleep. Anyway, Mon. went better. He had his leg cast changed. He also got to try his first little smidgeon of chocolate cake at the doctors! They were giving cake out to whomever wanted some, so I took a piece & gave Alex a little smidge. He liked it of course. Yesterday (Tues. 6/25) went well & was pretty much back to normal. Alex is, when he hasn't been through surgery, such a very very sweet, smiley little boy that, when he isn't feeling well & is fussy, it's very noticeable. It makes me so sad to see him so sad & unhappy! He's sleeping in the night again, though last night & Mon. night he did wake up once, usually around midnight. I would just feed him & he'd go right back to sleep. This has happened with his previous surgeries, too, and then it goes away & he just sleeps through the night again. For those of you who don't know, we are VERY fortunate! Alex sleeps from 6pm to 6-7am every night!!! He still takes 2 naps in the day, too, from 1-2 hours each.
Yesterday Alex & I went to the library & I got him 3 videos--2 Sesame Street Sing-a-Longs & one of baby animals. I got myself a couple of books & one for Jorge as well. I'm trying to get him to read something other than textbooks once in a while!! Alex & I also tried to go to this house--the Historic Burrell House--which is just a couple of blocks from here. They were giving tours there yesterday so I thought we'd check it out. But they had just finished their last tour of the day so we missed it. This Sat. though they are having their annual Old Fashioned Ice Cream Social, where they also have tons of things to do for children, though most are for ages 2 & up. But they do have a caricature artist there, so I thought it'd be fun to have one done of Alex. And of course we'll eat ice cream! Since we missed the tour, we went instead to a fish store (pet-type) near our house to look at the fishies. This particular store has, in addition to the smaller tanks of fish to buy, one HUGE tank that literally has fish in it that are as big as Alex. So we hung out at that tank for quite a while & the fish all came right up to the glass & checked us out. Alex thought that was VERY exciting!!! He loves to look at fish & loves the big aquariums at the zoo & elsewhere.
I'm not sure what all Alex & I will do today, but I'm sure we'll find something to do! I think we might go to Home Depot & look for a new bird feeder. The squirrels have just about ended the lifetime of one of my feeders. Not exciting, I know, but Alex has never been to Home Depot, so I'm sure he'll love it. Lots of new things to look at! He has enjoyed watching a little soccer while the World Cup is going on. He got to see Brazil score their one goal today against Turkey & win that game. Daddy is a soccer player, so he has been watching all of the games. Alex & I just catch snippets here & there. Jorge actually has a game down in Mankato this Sunday & I am contemplating as to whether or not Alex & I will accompany him. It would be fun, but it's bit late in the day so I'm worried our little guy may get too tired. We'll see.
So, as far as the surgery goes, here's what happened. They did not do everything that they had originally thought that they would do. The only things that were operated on were his hand, in which Dr. Ann Vanheest successfully separated Alex's ring finger from his middle finger. Some skin grafting also needed to be done. As you may or may not recall, Alex had a skin tag on the top of his right foot that was going to be removed by Dr. Kevin Walker. Well, Dr. VanHeest actually removed that & used that skin to do the skin grafting, saving Alex from having to have skin removed from elsewhere on his body. Funny how something that you think has no useful purpose whatsoever (i.e. a skin tag) ends up being very useful & ends up saving a person from more pain! :) Alex is in a full arm cast for 4 weeks on his right arm due to that surgery. It's full-arm because otherwise it can come off too easily if it's not hooked over the elbow. And it has to be on for four weeks because that's how much time skin-grafting needs to fully heal. Now, the other thing that was operated on was Alex's right foot. Obviously, as I just mentioned, the skin tag on top of his foot was removed. The skin tag on the side of his right foot was left on in hopes that it can be used for the skin grafting on the second stage of Alex's right hand surgery. So, what WAS done on his foot was the total bone reconstruction to repair the congenital vertical talus. That was a very successful surgery, done by Dr. Kevin Walker, and he even constructed an arch in the foot. Alex is in a full-leg cast for that & also has pins in his foot. As I previously said, the cast was changed on Mon. 6/24. Now the cast will remain on for 5 more weeks. Then he will go back to Dr. Walker & have it removed & it will be replaced by a shorter cast (coming up to just below the knee) for an additional 4 weeks, making the casting 10-weeks total. Alex loves to hit the two casts together & make a LOT of noise! And he likes to hit the arm cast on anything he can reach. I've been clocked a couple of times & it HURTS, so needless to say, my reflexes have gotten better. So have the kitties!! It doesn't hurt anything inside of the casts when he hits them on things. I checked on that right after the surgery was completed. I wanted to know if I needed to cover our entire house in foam padding! When Alex goes back in 5 weeks to have the short cast put on, this is the time that we will probably be scheduling his next surgery. This surgery will be to separate the pointer finger from the middle finger, separate the big toe from the toe next to it on his left foot, and lengthen the hamstring on his right leg. They did not do the hamstring on 6/18 because they were afraid that, along with the foot surgery, there might end up being to much swelling in between, causing circulation problems which can lead to problems of loss of tissue. Even without doing the left foot things & the hamstring, the surgery still lasted 5 hours. Jorge ended up not having to leave me, so I was very grateful not to be left alone. My friend Beth had volunteered to come hang out with me if Jorge needed to leave, so it was nice to know I wouldn't be alone!
I am going to try & decorate his casts like I used to do with his little leg casts so long ago. But I've discovered it's not that easy anymore. Alex doesn't sit still any longer! Alex is still able to roll over, much to my relief. He also now says "MAMA", much to my everlasting delight!!!!! :)
Well, Alex is waking from his nap, so I will end this. Thank you to everyone for your thoughts and prayers. They mean the world to us all. You are also in our thoughts & prayers & we hope that this summer is finding you all well & not too hot! Please keep signing in on the guest book if you have a chance!! It hasn't been signed since May 6! It's getting lonely! :)
Our love to you all,
Amy, Jorge & Alex

Thursday, June 13, 2002 at 11:53 AM (CDT)

Oh my goodness! I can't believe it's been a month since I updated this! So Sorry!

We have been busy enjoying the spring & summer! Alex & I have been to the Como Zoo in St. Paul a few times. It's not the greatest zoo (the animals enclosures are pretty small), but it's free! Alex had his first carousel ride on 5/23! I wasn't sure he would enjoy it, as it was inside & they had the music just blaring, but he did! I had someone who was watching their own child from the floor take pictures of us. I haven't gotten the film developed yet, but I'll bet the pictures are precious!

Alex, Jorge & I drove down to Shenandoah to see Grammy & Popop over Memorial weekend. Actually, first we drove down to Lee's Summit on Fri. 5/24 to see Brian, Christy & Brielle, and to meet Alex's new little cousin, Avery Janae Beavers. She was born on 5/18 & is an absolute doll!!! We were so happy that we got to see them all. My Mom & Dad met us there on Friday. Then on Sat. we all drove up to Shen. We had a great, though short time. We left back for Minnetonka on Monday morning.
For those of you who may not know, Alex is having a BIG surgery coming up here next Tues. 6/18. This surgery will be on his right hand--by Dr. Anne VanHeest (they are separating the ring finger from his middle finger), his right knee (they are lengthening his tendons behind his knee), his right foot (they are lengthening the tendons on top of his foot as well as at the back--his Achilles, removing the 2 skintags, and reconstructing the bones), and his left foot (they are just removing the skintag & separating the big toe from the one next to it, which is attached by just a little piece of skin). Needless to say (but I'll say it anyway) this is a VERY BIG, and VERY IMPORTANT surgery. This will hopefully enable Alex to straighten out his right leg & foot, enabling him to eventually be able to walk, run, play like normal. The separation on Alex's right hand of the pointer finger from the middle finger will be done at another time. He will be in the hospital afterwards for 2 days. Alex's right leg will be in a cast for 3 months, so essentially the rest of the summer. The doctor that will be doing that, Dr. Kevin Walker, said that we won't want him to be outside too much when it's hot (i.e. ALL SUMMER), as that would cause too much sweating, then stink & possible infection. So, I've been trying to have Alex out as much as possible before the surgery. He LOVES being outside!
Since our Memorial trip to Shenandoah was so short, Alex & I made another trip, just the 2 of us, on 6/4 down to visit Grammy & Popop. Alex is a great little traveler, not making a peep the entire drive. He just plays happily by himself or sleeps in the back until he's hungry. Then he just says "ah ah ah..." & I would pull over, feed him & then we'd be on our way again. It was a great drive! It took us 7 hours & we had good weather most of the way, save for a couple of rain showers here & there.
We had a great time with Grammy & Popop in Iowa. They really enjoyed seeing Alex for such a long period of time. We went to the Henry Doorly Zoo in Omaha. What a great zoo!! Alex loved it. There was an ostrich that kept trying to eat Alex's fingers & he thought that was just the most hilarious thing! :) He got a stuffed octopus animal for a souvenir. Otherwise, we just hung out, went to see some of my old friends, etc. I had a great time showing him off!! We drove back up to Minnesota on Tuesday 6/11.

Alex had his pre-operative physical yesterday with his pediatrician, Dr. Angela Sidler, and everything checked out A-OK!

Alex is 9 mos. now! He's 15 lbs. 7 oz., & 27 inches long. He is doing really well! He's not a big brute, but he's no tiny peanut either! Alex now has 3 teeth & think he's working on a 4th! He's TOTALLY trying to talk!!!!!!!!!!!!!!! He is using his little lips & tongue to try & make his "sentences". He tells us lots of stories! And last night he said MAMA over & over again!!!! I don't know if he actually understands fully that that is ME, but he definitely is saying it! And all this morning too! It just brings tears to my eyes! Jorge couldn't believe it! And he is SO PROUD of everything he's saying. Sometimes he's kind of looking off into the distance, like he's thinking, then he starts "talking" and then he'll suddenly just SMILE! It just makes me wonder SO MUCH what he's actually THINKING and trying to say! He obviously understands himself. It is just a true miracle to watch! Alex is discovering ways to get around. It's difficult for him to crawl, with his scoliosis as well as his right leg always being bent, but while at Grammy & Popop Beavers' he discovered that he could get to me or to a toy by rolling to it! It's so exciting!!! Today Alex took a bath in the BIG tub for the first time! He had all of his little bath toys--boats, ducky, squirters, etc.--and loved it! I got it on video tape as well as the regular camera. I'm/we're SO proud of my/our little boy.

Alex has been busy working every Thursday with his physical therapist, Lynne & his teacher, Lori. He just loves them! He is a true ladies man & a flirt!! :) They come to our house every Thursday for 1 hour.

I'm nervous about the big surgery that's coming up on Tuesday. Jorge starts his class that day, so I will be ALONE at the hospital for 2-3 hours while Alex is being operated on. NOT LOOKING FORWARD TO THAT. His surgery is the first case of the day, so it's at 8am. We have to have him there at 6am. I like it SO MUCH better when he's the first surgery of the day rather than being scheduled sometime in the afternoon. This is because he can't eat any "milk" for 6 hours prior to the surgery. But when he's at 8am, it doesn't matter because he's sleeping. The last surgery he had was at 2pm & they didn't get him in until 3pm. WHAT A NIGHTMARE!!! You can't really explain to a baby WHY they can't eat. I'm a morning person anyway, so I don't mind being up early.
Well, I'm going to close this for now. Sorry again that it's been so long since I updated this. I am going to post some new pictures on the picture page, so be sure to tune in to that too!
I hope that this summer is finding you all well! You are in our thoughts! Please keep us in your thoughts & prayers, especially on 6/18!!! Keep signing in on the guestbook! I love to hear from you! Feel free to email me too (shadyoak@hotmail.com). Take care & keep in touch.
Love,
Amy, Jorge & Alex

Monday, May 13, 2002 at 12:44 PM (CDT)

Hello to you All!
I'm sorry that it's been so long since my last update! I hope that you're all doing well. We are doing fine. I had a very nice Mother's Day yesterday. Alex got me a sterling silver charm bracelet with his birthstone charm (Sapphire). It's beautiful! We met up with Jorge's family at a restaurant for lunch, then came home & played as a family. Jorge then went to a soccer game (he's in a league) at 6:30 & when he got home we watched a movie I had rented. It was a very very nice 1st Mother's Day!
Alex's arm & lip are healing nicely. His reach with his left arm is getting better & better, which is great to see! He's even pushing up on that elbow, which he never did before. Gradually he will just get stronger & stronger!
On May 4, Jorge, Alex & I went on the Animal Humane Society's 'Walk for Animals' & had a great time! It wasn't the sunniest day, but it was still nice. We saw tons of animals & even two alligators. We walked the entire 5 miles.
On May 7 Kathleen, Alex's primary nurse that he had had while in the NICU, came over for a visit with her 20 mos. old son, Sam. We had a great visit & it was really wonderful for her to see Alex after all of this time. He liked seeing her as well!
We've got the date for Alex's next surgery. It will be on Tues. June 18 at 8am. This surgery will be on Alex's right hand to separate the fingers, his right knee to loosen the tendons behind it, and his right foot, to reconstruct the bones that are in the wrong places as well as to remove the 2 skin tags that are on that foot. They will also be removing the skin tag off of the left foot as well as separating the big toe from the toe next to it, which are attached by a small piece of skin. The whole thing will take 4+ hours. I'm not sure how long Alex will be in hospital yet. We have the presurgery consults with both doctors on June 3. Dr. Ann VanHeest will be doing the hand & Dr. Kevin Walker will be doing the knee & feet. I will find out more info from them at those appointments. This will be a big surgery. We are hoping that Alex will be able to straighten out his leg fully & that his foot will be in the correct position after this, eventually leading to him being able to walk, etc.! Alex will be in a cast on his right leg for 3 months after the surgery. Basically the entire summer the poor little guy will have that one leg in a hot cast. But if it fixes his foot & leg, it will all be worth it!
I have some pictures from Mother's Day that I will get posted on here soon, so stay tuned! In the meantime, check the photo page because there may be pictures that you haven't seen yet! I have a new, much shorter & lighter (in color) hairdo!
We hope that you're all doing well & we thank everyone for their continued prayers for Alex's speedy recovery & development.
We love to hear from you so please don't hesitate in signing in on the guestbook page!
:)
Love,
Jorge, Amy & Alex

Wednesday, April 24, 2002 at 10:19 AM (CDT)

*****5/8/02 NEW PIC ON PHOTO PAGE!******


Hi Everyone!
Alex is doing better!
He hadn't been doing that well because of the fact that he had no access to his thumb. Alex is a thumb-sucker, so with both arms being restrained, he had no way to comfort himself. The poor little guy, over 3 days only got about 12 hours of sleep---not nearly enough for such a little guy. He didn't nap at all & was up most of the nights. Very hard on everyone! You just feel so bad because you feel helpless. Well, on Sun. night, after 3 days of no naps & very little sleep, I'd had it (as had everyone) so I took the initiative & paged the doctor that had done the lip surgery (this is the surgery that kept him from his thumb, which he wasn't supposed to have access to until today 4/24) and said "ENOUGH IS ENOUGH!!" They were worried that if Alex sucked his thumb, then the stitches might come out. Well, I explained to the doctor that, since Alex has a cleft palate, he really has no sucking ability. What he actually does is tongue his thumb. I argued my point & the doctor then agreed with me & said that I could take the brace off of his right arm so he could get to his thumb. I whipped that thing off of Alex & things have been much better since! Alex is back to his usual schedule of 2 naps a day, plus sleeping through the night, going to bed at 6-7pm & getting up at 6-7am. We are all much happier now, and the most important thing is, ALEX IS HAPPY AGAIN. And his lip is doing fine. He actually goes to see that doctor today at 2:30pm, and I believe he'll be taking the stitches out. Alex learned that if he put his thumb where the surgery site is, it hurt. So, being the very smart little boy that he is, he moved his thumb to the OTHER side of his mouth so that it wouldn't hurt! He's our little Einstein!! We certainly don't have a Bart Simpson for a boy! HA!
On Mon. he went to see the surgeon that did the arm/shoulder surgery & had his sling thing removed. Now he just has a dressing on the wound that I change every day & she will see Alex back in 2 weeks, at which time she will have the date & time of Alex's next surgery, which will be to separate the fingers on his right hand as well as being in conjunction with the surgery on Alex's right knee & foot. The surgery will be sometime in June. Oh, the poor little guy. He has just gone through SO MUCH! But he's our little trooper. I guess it's better to get all of this stuff out of the way as early as we can so that he won't have any recollection (hopefully!) of it. I just feel bad for everything he has to go through. He knows, though, that he is the most loved little guy in the world & that Daddy & I will be there for him every step of the way--FOREVER! And he also knows that many other people are there for him & love him, too.
So, we are all doing better. Alex seems as though he might be getting a cold. With all of that lack of sleep, his immune system was just so weak. So I'm hoping that, now that he's getting plenty of sleep, he'll kick that cold right out of his system.
Jorge's friend EJ came for a visit with "Uncle" Bill on Sun. Bill lives here & sees Alex a lot, but EJ, who works for Cargill, lives in Sao Paulo, Brazil & this was the first time he was able to meet Alex. We had a very nice time & are hoping to see EJ once more this week before he heads back to Brazil on Sat.
This Fri. 4/26 Alex & I will be meeting a couple of friends, Beth & Jackie that I used to work with at the advertising agency. It will be nice to see them! They haven't seen Alex since he was I think4-5 months old. We'll be going to a deli called Zarroff's, which is really close to our house, for some good homemade Borscht! YUMMY!
Next Sat. 5/4 is the annual Animal Humane Society's Walk for Animals. I participate in this every year & Jorge went with me for the first time last year. If the weather permits, Alex will be going with us this year. It is a 5 mile walk, the largest fund-raiser for the Humane Society in the country, and all the proceeds go to the shelter for the housing & care of the animals, their shots, spaying/neutering etc. It is a fantastic cause! I think, if Alex gets to come, that Alex will LOVE seeing all of the doggies & other critters that come for the walk too. (I've seen alligators, cats, sheep, goats, iguanas, fish, horses, ferrets, birds, all kinds!). If you would like to donate, I (and the animals!) would GREATLY APPRECIATE IT!!! It would just be a flat pledge, not so much per mile, and the donation is tax deductible. You would make your check out to "ANIMAL HUMANE SOCIETY" in whatever dollar amount you would like. But, since the walk is coming up here REALLY soon, if you would like to donate, please do so ASAP!!! You would just send the check to our home address & then we deliver the checks when we check in for the walk. If you would like to donate, but are afraid the check might not make it here in time, go ahead & send it & then just email me to let me know that it's in the mail & what the $$ amount was you pledged. I will add the pledge to my pledge sheet & then if it arrives after the walk, I will just deliver it to them then. I hope that some of you can help out! The animals need your help! (Jorge says we should do a "WALK FOR JORGE, AMY & ALEX"--ha ha!).
We hope that this spring is finding you all well & happy! We keep getting snow! :( ICK! It will pass though. It's too warm to stick around for long.
DON'T FORGET TO CHECK OUT THE NEW PHOTOS ON THE PHOTO PAGE!!!
Peace & good health to you all. We love to hear from you! You are all in our thoughts & prayers.
Remember, if you'd like to pledge to the walk for animals, please do so quickly & email me that you've got it in the mail & the dollar amount that it's for. (I'll put my email & our home address at the end of this journal entry.)
THANK YOU IN ADVANCE!
Alex says THANK YOU for all of your thoughts & prayers!
Love,
Amy, Jorge & Alex
3534 Shady Oak Road
Minnetonka, MN 55305
tel: 952-935-3166
email: shadyoak@hotmail.com

Friday, April 19, 2002 at 01:59 PM (CDT)

Alex's surgery went as well as expected. This one is definitely the hardest on him & us so far. He seems to be in a LOT of pain. And, well, he just doesn't look like our little Alex. His lip is all swollen & bloody & bruised. It is extremely hard to see him like this. Seeing him like this makes me wish I could just take it all back & that we'd never had that done. But it's too late now. We just want our smiley little Alex back, and I think it might be a while before we do. Alex's left arm is in a sling which is strapped to his chest. He will probably have to wear that for 3 weeks. He has an appointment with the orthopaedic surgeon Dr. VanHeest on Mon. & I think then she'll take a look at the arm & shoulder & decide how long he'll wear the sling like that. It turned out that Alex actually had an extra muscle behind his arm, a trapezoid I think. She got the 2 muscles that were attached wrong reaattached. She did not have to do anything with the veins or artery. They were in the right place, but one of the muscles that had been attached wrong was wrapped around them. Anyway, it's fixed. Due to Alex's lip surgery, his right arm/hand is also in a brace so that he cannot pull at the stitches. Alex is a thumb-sucker, so we're afraid when he becomes more coherant, this might be very hard on him. He has to wear the brace on his right arm for one week, as it's planned right now. Alex sees his ENT, Dr. Hamlar for the follow-up on Wed. & hopefully at that time he'll say that the brace can come off. Alex is getting Tylenol #3 w/Codeine, which he has after every one of his other surgeries, but we've never seen him this out of it, or in so much pain before. He has always bounced back in a day & been our smiley little guy again. We really hope this happens soon. It's so hard to see him sad & in pain, and not be able to do anything about it.
The surgery itself (both) lasted a total of 5 hours, so it was also definitely the longest surgery Alex has had done. We arrived at the hospital at noon yesterday & Alex went in for surgery at 3:30pm & did not finish until 8:30pm. He then had to be in recovery until 10:30pm & they finally took him up to a room at 11pm. We went home at midnight. It was a long day for everyone. I brought him home today at noon & Jorge met us for lunch. Alex is resting & we hope that his recovery speeds up. I will keep you posted.
Thank you for your prayers. Please keep them coming.
Love,
Amy, Jorge & Alex

Wednesday, April 17, 2002 at 03:55 PM (CDT)

Hello All,
I hope that it is as beautiful where you are today as it is here! Sunny & 65-70 degrees. Perfect.
Well, Alex has his surgery tomorrow. Please keep him in your prayers tomorrow, extra-strength. I, at least, am a little anxious. I am hoping that the surgery that they will be doing on his lip will not change his appearance too much. Right now, because of the fact that the muscle in his lip isn't connected, when he smiles he's just got the CUTEST little Elvis sneer!!!! We love that sneer SOOOOO much! I am hoping that this surgery will not change it too much. And we REALLY hope that the surgery on his left arm will fix everything & that he will gain full function of that arm. Please keep us, and especially Alex, in your prayers.
Today I took Alex to the Como Zoo in St. Paul. He had been to the Minnesota Zoo, which is in Apple Valley, but not the Como one yet. He liked to watch the Spider Monkeys and the Polar Bears. You know those statues/sculptures of animals that they sometimes have at zoos that little kids can sit/play on? Well, they had giraffes at Como, and there was a lady there that was nice enough to take a picture of Alex on the giraffe with me holding him. It should be a really cute photo! I wanted Alex to have something fun to do today, since tomorrow won't be much fun for him. He doesn't have to be at the hospital tomorrow until noon (the surgery is at 2pm) so if it's this beautiful again tomorrow, I think I'll take Alex on a walk around the neighborhood. He loves it outside! He sometimes laughs when the breeze hits his face. :)
Alex is eating all of the pureed foods now. He loves peas & doesn't like peaches. He also likes prunes, which is a good thing! He also sometimes gets infants white grape or pear juice which he really likes. What he loves to do is, if he's sitting on my lap & I take a drink of water or kool-aid from a glass, he LOVES to drink out of the glass!! He does really well with it! He is also eating Cheerios now. I soak them really well in his milk to get them really soft & then give them to him. He actually chews them! That's so wonderful to watch. Did I mention previously that he has his first teeth now? He has the two middle bottom ones. He started getting them right before Easter. It didn't seem to bother him really, except for one day when the 2nd tooth was ready to break through, he was a little cranky, but a little Tylenol seemed to help. He loves to play with his new teeth!
I will write more after Alex's surgery tomorrow, though probably not for a few days. They think that Alex will only be in hospital overnight, which is really nice. But he will have his left arm in a sling, strapped to his chest for 3 weeks, which will not be much fun I think. And we will also, due to the lip surgery, have to feed Alex through his tummy tube for one week. I suppose that we should be thankful that he has that little tube & that we won't have to struggle trying to feed through a syringe. Please pray for our little guy, for a safe, successful surgery & a speedy recovery!
Thank you to everyone for your thoughts & prayers! Again, we love to hear from you!
Love,
Amy, Jorge & Alex

Wednesday, April 10, 2002 at 09:11 AM (CDT)

HELLO EVERYONE!
HAPPY SPRING TO YOU!
Well, it's been a little while again, so I'll try & fill you in on the happenings in the Molina household...
I have to say that Alex's doctors appointments have been getting fewer & far between, so it's been a lot less hectic! That is SO nice! Now we have to find other things to do to fill our days other than drive to & from doctors. Don't worry, we've still been keeping busy! :)
On Sat. March 23rd, my old Camp Foster (Okoboji) friend Sarah (Surbeck) Carlton came to visit us with her family. She & her husband Mark & their 2 children John (4) & Emily (2) moved up here from Indiana in January. Sarah & I hadn't seen each other for 15 years!!! Her husband was amazed at how, even though all of that time had passed, we still struck up a conversation as though we'd just seen each other the weekend before. It was great seeing her & meeting her family! The kids loved Alex & the feeling was mutual on Alex's part. They came over for lunch & we had a wonderful time. We hope to do it again in the near future!
On 3/26 Alex had his follow-up with his neurosurgeon, Dr. Lam for his head surgery. Alex got a clean bill of health! The surgery site healed up beautifully, and he already has a ton of hair growing back there. Alex will not see Dr. Lam again for another year! I told you the dr. visits were getting fewer & far between! Can you believe that Alex will be a year & a half old before he sees Dr. Lam again??? WOW!
On 3/27 Alex had the follow-up with his ENT, Dr. Hamlar for the ear tube replacement. Alex's ears were totally clear for the first time in a long time! YIPPEE! I also discussed with Dr. Hamlar the upcoming surgery on Alex's lip, which will be done on 4/18. Though Alex's lip looks normal from the outside, the muscle inside is not actually attached in one area. Dr. Hamlar will make a small incision in his lip & then reattach the muscle. He will make the incision right in that little divet we all have above our upper lip, in order to try & conceal the scar later. Alex's hospital time after this should only be one day, two tops. This surgery will go along with the surgery on Alex's left arm & shoulder, which I'll discuss more in a little bit.
On 3/28 Alex's physical therapist came to the house to work (play) with him. He really likes her (Lynne) so that will be nice! She will be coming every Thursday from now on for one hour.
On 3/29 Grandma & Grandpa Beavers came up to visit for Easter! We had a fantastic time!!! G & G Beavers hadn't seen Alex since the beginning of Jan., so it was long past due! We all got to hang out at our house & just relax. Alex LOVED seeing them & had a TON of really big smiles just for them. On Easter Sunday we all went to our church, Immaculate Heart of Mary, for a beautiful service. Jorge, Alex & I always go in the soundproof "cry" room, just in case! My Mom & Dad were out in the regular sanctuary. We then went home to our house & made a delicious lunch. Mom & Dad stayed at the Holiday Inn a couple of miles from here on Fri. & Sat. & then on Sun. they stayed at our house. Our house is so small, there isn't much spare room, so Mom & Dad had to sleep on the couch & loveseat! Mom said it wasn't TOO bad, but it wasn't somewhere she'd sleep every day! Ahhh...someday we'll have a bigger house!
Mom & Dad left to go back to Iowa on Mon. 4/1. That was also the day that Alex had his pre-surgery consult with his upper-extremeties orthopaedic surgeon, Dr. Ann VanHeest. Alex has a muscle that is attached incorrectly on his left bicep area. It is attached to the chest wall when it shouldn't be, therefor limiting Alex's mobility. Dr. VanHeest has to detach that muscle & reattach it correctly. There also happens to be an artery involved. Dr. VanHeest thinks that she can handle that, but Alex's Granpad, Dr. Molina, who is a cardiovascular surgeon at the U of MN is keeping his schedule free that day in case he needs to come in to help. Grandpa Molina does a procedure that specifically involves the artery & arm/shoulder/chest wall & he's the only one in the area that does this procedure. There will also be a plastic surgeon, Dr. George Landis, involved in the surgery, to help with the construction of an armpit for Alex, as well as the reconstruction of the skin on Alex's arm. This surgery will take about 3 hours, but Dr. VanHeest said that, as long as there are no complications (and we pray there won't be) that Alex will only have to be in hospital overnight. Alex will however need to have his left arm in a sling that will be strapped to his chest for 3 weeks. YIKES! And to make matters worse (possibly), with the lip surgery, Alex MAY have to have his right arm in a restraint as well for a week. I say MAY because if he doesn't seem like he's going to pull at the stitches or mess with them, then he won't have to be put in restraints, but if he DOES mess with them there will be a restraint. Can you say "cranky baby"? I hope he won't need the right arm restrained, as Alex is a thumb-sucker & he sucks his right thumb. With his left arm restrained, I think our little guy is going to want to comfort himself a lot!
On 4/4 Alex & I went to our first "Mother's Sharing" group at the St. David's school about 2 blocks from our house. This is a Mom's group for Moms of special needs children. They just get together for an hour on the 1st & 3rd Thursdays of each month to talk & share. There were 5 other mothers there. Their children were all cognitively special needs, with Down's Syndrom, Autism, etc. Alex was the only physical special needs child. I thank God every day that Alex is ok cognitively!!!!
On Sat. 4/6 Daddy Jorge & I took Alex swimming at the YMCA close by. He really loved it! Jorge & I took turns with Alex & when it wasn't our turn, we got in a few laps ourselves, which felt great. I've always loved swimming! But unfortunately, we can't afford a membership to the gym. It's $82 a month for a family membership, can you believe that?!?!?!?!?
On 4/8 Alex had an appointment with Dr. Walker, his lower extremeties orthopaedic surgeon. Alex had an x-ray done of his right knee before we saw Dr. Walker. The bones look fine in the knee, so it must just be all tendons & muscles that are keeping Alex from being able to fully extend his right knee. Dr. Walker will do surgery on that, as well as Alex's right foot in June sometime. The nurse will be calling me sometime next week to give me the date. That surgery will also be done in conjunction with the surgery on the right hand most likely.
Yesterday, 4/9, Alex & I went on a really long walk. An hour & a half! It was such a beautiful day!! Alex got a semi to honk for him & tons of little kids waved to Alex from their school buses. It was a wonderful walk! Alex loves getting to go outside! So do I! It's raining today & is supposed to for part of tomorrow as well, but maybe tomorrow afternoon we'll be able to get out again. I put Alex in our Baby Bjorn, which is one of those front carriers so my hand are free. It's really nice! One of our best investments!
OK, I hear Alex waking from his nap, so I'd better go make a bottle. I hope that everyone is doing well! We love to hear from you all!
Take care!
Love,
Jorge, Amy & Alex

Monday, March 18, 2002 at 03:22 PM (CST)

******3-29-02 NEW PHOTOS ON SITE!*******
(SORRY, NO NEW JOURNAL ENTRY-THE ONE BELOW IS STILL FROM 3-18)


Wow! It's been a while, hasn't it?!?! We've been really busy. Let me try & recap what's been happening in our world...
On March 4, Alex had his 6 mo. check-up & he checked out fine! He's on the small side, with all of his measurements in the 5th percentile, but that is where he has always been, so they aren't concerned in the least. He measured 24.5" long & weighed 13lbs. 7 oz. His pediatrician, Dr. Angie Sidler just loves Alex to death. How couldn't you???? He has such a great disposition & personality!!!
On March 5 Alex had his all-day appointment with the Craniofacial team. We didn't learn one single new thing, but the people that will eventually be working on/with Alex when he gets older at least got to meet him. Jorge was with us the whole time, so that was nice. Poor Alex was VERY tired, as he only got about a 40 min. nap. We did get out of there around 2:30 though, so it wasn't quite as long as expected.
On We. 3/6 Alex & I took a field trip to a place called "Doin' the Dishes", which is one of those places where you get to paint a ceramic plate & then they fire it in the kiln for you. Alex had already done one plate on 3/1 & we went back to pick that one up & Alex ended up doing another plate. I forgot to take the camera the first time, so of course he had to make another plate (and mess) since I had the camera handy! I'll post a picture of it on the website today, so check it out! It was a ton of fun!
On Fri. 3/8 Alex had his 6 mos. portrait taken with a live bunny rabbit. It went really well other than the fact that Alex wouldn't smile for the photographer (he wasn't really "smile generating") and he kept trying to pull the bunny's ears & fur off! :) The pictures are still very cute & I can't wait to get them back. I also ordered them on disc, so I will post one on his website once I get them. That should be at the end of this month, so stay tuned!
On Sat. 3/9 Alex turned 6 months old! Can you believe it? My, how time flies when you're having fun!!!!!
On Monday 3/11 Alex was seen at Gillette Children's Hospital in St. Paul at the Botox clinic. He had a Botox injection put into his right leg to see if it will help loosen up the hamstring so that he might straighten out his leg. They aren't real hopeful, but thought it was worth a shot. If it works, at least somewhat, we should see some results in 2-4 weeks. Nonetheless, even if it does work somewhat, he will still need surgery on that leg as there is also bone involved.
On Wed. 3/13 Alex had his first of 3-4 fittings of his scoliosis brace. Boy, he does NOT like that thing! But I supposed, as with his special shoes, he'll just get used to it & it will become commonplace. It's just going to be hot in the summer for him. It's a jacket-vest type thing made of plastic & it goes all the way from his shoulders to his pelvis. We will have a second fitting of it sometime this week but they haven't called me back yet to let me know when.
On Sat. 3/16 Mommy (that's me) got to have a little pampering done! While going through some things I found a gift certificate to a spa for a manicure & pedicure that Jorge had given me 2 years ago. Although it was technically expired, I begged the spa to honor it & they eventually did. So Sat. morning was pamper time for me! Speaking of pampering, when I was done at the spa it was off to Target to buy Pampers. Talk about back to the REAL world! :) Saturdays are usually my time for "ME-TIME" and Jorge & Alex hang out--just guys! I usually just go to the grocery store (which I actually really enjoy) and to a craft store up here called Michael's to peruse their scrapbooking supplies. I have just started scrapbooking and am enjoying it IMMENSELY!!!! It is so nice to finally have a creative outlet again! It's a great tension release. I just wish the supplies weren't so expensive. That's why, many times, I'm just PERUSING the scrapbooking isles. WE have to really watch our budget now that we're a one-income family. But I just love scrapbooking when I have the supplies to do it!!! :)
This week, so far, is fairly open. Today & tomorrow are free.
Wed. 3/20 the home nurse is coming to our house to give Alex his Synagis injection. Also on Wed. we may be getting together with a girlfriend of mine, Sara S., whom I used to work with at the mortgage company. She has 2 little boys, Levi--almost 2yrs., and Sam--8 months. We haven't seen each other in over a year, so I really hope we get to on Wed.!!!
On Thurs. 3/21 (first day of Spring!!) the Early Childhood Intervention people are coming again to our house. This will be a team of 6 people & they will discuss their game-plan for Alex. Jorge needs to be here
for this one, so we'll be doing the meeting over lunch.
Fri. is free. Sat. 3/23 we might be getting together with a really old girlfriend of mine, Sarah C., formerly Sarah Surbeck. She & I went to summer camp at Lake Okoboji together for years & were very good friends. She was from Sioux City. She had been living with her husband & 2 children in Indiana, but a promotion in her job brought them here at the beginning of January. We haven't seen each other in about 15 years! It will be great to see her & meet her family!
Alex's Grammy & Popop Beavers will be coming up to visit for Easter weekend. We can't wait to see them! They haven't seen Alex since the very first of January. TOO LONG! We wish that they & Uncle Brian, Aunt Christy & Cousin Brielle didn't live so far away. Anyway, we will have a lot of fun with Grammy & Popop! :)
What does the near future hold for Alex you ask? Well, his next surgery will be on Thursday April 18. This surgery will be on his left arm & shoulder, as well as his lip. Originally the next surgery was going to be on his right hand to separate his fingers. But since he functions really well with that hand (he actually favors that hand) and it's not inhibiting him developmentally, I called the orthopaedic surgeons office & requested that his left arm & shoulder be worked on first instead, as that IS inhibiting him developmentally. He can't push up from his tummy completely and it would definitely cause problems when the time comes for him to crawl. So the left arm will be done first. The lip part of the surgery is to connect the muscle behind his lip on the right side. That's where he has his microform cleft. The lip itself is intact, as you can see from photos, but the muscle behind it is not. That part of the surgery will require Alex to be in arm restraints for 1-week. We're NOT looking forward to that, as Alex is a thumb-sucker. But it's better to get it out of the way now, while he's still young.
On 3/26 Alex will have a follow-up appointment with his neurosurgeon, Dr. Lam for the head surgery. Alex, by the way, is doing GREAT!!! His head is completely healed now & it looks wonderful.
On 3/27 Alex has his follow-up visit with his ENT, Dr. Hamlar, for the tubes in the ears. Alex's ear infection FINALLY seems to be gone after having it what seems like forever. I will also discuss with Dr. Hamlar at that time the lip surgery more in-depth.
On 4/1 Alex will have his pre-surgery consult with his hand/arm orthopaedic surgeon, Dr. Ann VanHeest to go over everything he'll be going through for the surgery.
On 4/8 Alex will see his leg/foot orthopaedic surgeon, Dr. Kevin Walker, to see how is feet are doing as well as his right knee, especially after the Botox injection. It will have been almost one month since that injection. At this appointment we will also discuss the surgery on his right foot & knee. The surgery on the foot will be much more complicated than the surgery on the left foot had been, as there is bone involved here so it will need to be reconstructed. Alex will be 8 mos. at this point & they want to do those surgeries when he is 9 months.
Well, as I said, we've been busy! But we are all doing really well. We're ready for spring!! Jorge is VERY busy at work. I still take Alex on a field trip every week, if his schedule allows it. I don't want him to associate every time that he gets in the car/car seat to mean he's going to the doctor to be poked, prodded or cut open. This week, on Friday, we are going to go to the YMCA close to here on a free guest-pass & I'm going to take Alex swimming for the first time! I'm really excited about this!!! (I'm NOT excited about how I'm going to look in my swimsuit 6 mos. after having a baby!) We have to go find some of those "Little Swimmers" swim-diapers and I have to find the biggest swimming suit I've got.
We hope that you are all doing well and that you're ready for spring like we are! Even though this winter was mild, I'm always ready to move on from it!
Thank you again to everyone for all of your thoughts & prayers. Keep 'em coming!
You're all in our thoughts & prayers too.
Love,
Jorge, Amy & Alex
p.s. Don't forget to check out the new pics!

Tuesday, February 26, 2002 at 02:05 PM (CST)

****NEW PICS ON PHOTO PAGE! (3-3-02)****
Hello Everyone!
Well, Alex did great with his latest surgery! Yesterday at 7:30am he had surgery to remove the skin tag on his head, as well as replace the tubes in his ears & have a frenulectomy performed. The latter involves that little piece of skin that is under your tongue. Alex's tied his tongue down too much, so they just had to clip it a little. Normally that's just a procedure that is done in clinic, but we figured that since he was going to be under anesthesia we may as well have it done then. Anyway, Alex did great. As far as the skin tag is concerned, they removed the portion that was visible on the outside & they did not have to touch his skull. However, the "tail" of the skin tag, which is a sinus tract, does go into his brain. They think it is exactly like what they found going into his spinal cord and think that this one too probably has a benign tumor at the end of it. But, since Alex is so young & his brain is still so fragile, unless the "tail" starts to grow, they will not remove it until Alex is 6-7 years of age. Alex will have follow-up visits with the neurosurgeon that performed this surgery, Dr. Lam, roughly every 6 mos., and he will have repeat MRI's done every year to monitor whether or not the "tail" is growing. If it does, then we will discuss our options at that time. The ear tube replacement went fine & there was actually only one of the tubes that was out of place. Alex still has an ear infection, so we are continuing with the Amoxicillin as well as the Floxin ear drops. So, Alex did so well that he is already home! He went up to his room after surgery yesterday at noon, and today I wheeled him out of his room & back home at noon! A very brief stay. WE LIKE THAT!!:) It is really cold here right now. Actually, for Minnesota I guess it's actually not bad at all. I think it was going to be in the low 20's today which for Minnesota in Feb. is warm. We've just gotten spoiled this winter with all of those 40-55 degree days!!!
What's in line next for Alex, you ask? Well, let me tell you! The rest of this week is doctor-free for him. YIPPEE! We'll just kick back & relax this week. Next week is a fairly busy one. On Monday 3/4 (can you believe it's March already???) he has his 6 mos. check-up with his pediatrician, Dr. Angela Sidler. Then on Tues. he has an all-day appointment with the Craniofacial team at the U of M. This is a group of 10 doctors, all with different specialties, that are going to meet with us & discuss what will be coming up for Alex in regards to his cleft palate. They say it lasts from 9:30am-4pm, but one of the doctors told me it's usually just more like until noon or so. I hope so! ICK! Wed. is free. Thursday 3/7 the Early Childhood Intervention people will be coming back to our house, this time to do the gross motor skills assessment. (I love that they come to US!). On Friday Alex is having his 6 month portrait taken with live bunny rabbits! THIS SHOULD BE INTERESTING!!! ;) I will try to post one on this website. Then on Sat. 3/9, Alex is 6 MONTHS OLD!!!!! CAN YOU BELIEVE IT?!?!?!?! Time just flies by & we cherish every second that we have with Alex. I can't even believe that he is already almost a half year old. On Monday 3/11 Alex will be having the Botox injection (I wrote more about this in a previous journal entry, so if you have questions, please look back at those). We hope that that will help Alex's right leg out!
The next surgery in line will be the separation of the fingers on Alex's right hand in conjunction with his cleft lip repair as well as the tummy hernia repair. We don't have a date for that yet. Alex had an appointment with Dr. VanHeest, his arm/hand orthopaedic surgeon, yesterday to go over the results from the MRI he had done on his shoulder. Obviously he couldn't make that appointment, but I went to it alone while Jorge stayed with Alex. It was a complete waste of my time. After I waited for 50 minutes Dr. VanHeest finally came in & the people that had read the MRI only wrote that the ball & socket of Alex's left shoulder were normal. Well, we already knew that. What they were supposed to look at was the muscles & tendons, which are not in their normal spots. Plus, they still had not scheduled the right hand surgery. So I learned absolutely nothing & completely wasted an hour of my time which could have been spent with Alex in the recovery room. Thank goodness Jorge was with him. They didn't even tell me when I could come back for the CORRECT MRI results, so now I am going to have to call them & bug them. That's what it takes so much of the time. It sometimes seems that nothing would get done if I didn't call & ask about it. Anyway, I'll find out more & fill you in once I do.
Alex is napping peacefully & I'm going to now finish doing the laundry & unload the dishwasher! Exciting! I hope that this end of Feb. finds everyone happy & healthy! Please keep coming to visit Alex's site. We love to hear from you on the guestbook!
Love,
Jorge, Amy & Alex
p.s. Thank You for all of your thoughts & prayers!

Tuesday February 19, 2002 9:13 PM CST

Hello to Everyone!
I hope that everyone's winter has been as nice as ours. It has been so mild! It really makes going to all of Alex's doctor appointments a lot easier and certainly more pleasant! Well, speaking of appointments, let's do a run-down of the latest happenings with Alex...
On Tues. of last week (2/12) Alex went to Metropolitan Orthotics Lab in Mpls. to have a mold made for his scoliosis splint. This was NOT a fun experience. The people doing the mold, though perhaps very skillful with adults, had NO IDEA what to do with a baby, especially one that is so curvey. They had 3 people working on him & still seemed completely lost. They even admitted to "never getting to see babies". I learned later that their prime business is adult trauma patients. Needless to say, I (as well as Alex) was a complete wreck by the time we left there. And that was just the first of 3 appointments that day!!! OOOF! (As a side note to this, after going home, I thought about the experience & decided that I was not comfortable with these people working on Alex. I called Dr. Ogilvie's--the ortho spine specialist-- office the next morning & told them this & also told them that I wanted instead to take Alex to Gillette's Children's Hospital in St. Paul, which is where Alex had gone for all of his leg cast changes & where he goes for his special shoes. I then called Gillette's & arranged an appointment, which was today, so I will get to that once I've finished with the rest of Alex's previous appointments!)
So, after the Metropolitan appointment we went to the U of M to see Dr. Lam for Alex's spinal cord surgery follow-up. Dr. Lam, who is one of the nicest people, said that Alex's back looked GREAT. We also discussed the surgery to remove the skin tag on Alex's head, which he said could be done in the next couple of weeks--more on this later in this journal entry. After Dr. Lam, we went to see Dr. Hamlar, the ENT. Alex had been dealing with an ear infection, for which I had been irrigating his ears with a vinegar water solution & putting in antibiotic ear drops. Well, his ears started to bleed, so I brought him in to see Dr. Hamlar. The reason for the bleeding is that Alex's tubes that he had put in his ears on 1/11 have already come out. Alex is such a fast healer that his ear drum already pushed them out. So, Dr. Hamlar said to stop with the irrigation (which I already had)but continue with the drops and that when Alex has his surgery on his head, they will team up with Dr. Lam to put new tubes in. So, that was Tuesday. On Wed. 2/13 we had a free day for Alex, but it was Mommy's turn to go to the doctor. That was painless for both of us & we went home & relaxed after that! On Thursday 2/14, Valentine's Day, the Early Childhood Intervention team came to meet Alex and they were all very nice! They spent an hour or more with Alex & just fell in love with him, just like everyone that meets Alex does! :) This meeting was basically just to meet Alex & get a background on him & just sort of observe him. We scheduled a second meeting, which will be to assess his gross motor skills, for 2/21. Also on Valentine's Day, Jorge cooked an absolutely FABULOUS meal for me!!!!! He made a Caribbean Shrimp & Mango salad as the appetizer & had Filet Mignon in a mushroom ginger sauce as the main course with non-alcoholic sparkling pear cider to drink & cheese cake for dessert! It was FANTASTIC and I didn't have to lift a finger! :)
On Friday 2/15 Alex had the whole day doctor-free, so Mommy & Alex went on another field trip! This time we went to the Minnesota Zoo, Alex's first zoo trip! Alex was mesmerized by the Discovery Bay Aquarium & loved watching all of the beautiful fish and the sharks. He loved it when the moray eel swam right up to the glass in front of him & said "hi"! The sea turtle did the same thing many times & he loved that too! The sharks just cruised slowly by & Alex watched them the whole time. He just loved it! We stayed there for a really long time & I captured it on our video camera which will be fun to watch years down the line! Next we were going to catch the dolphin show, but we decided to skip it because no strollers were allowed, so I would have had to carry Alex, my purse & coat, the diaper bag, everything. A bit much for me! We'll have to catch that show when Daddy Jorge can come along as well. After Discovery Bay we headed to the Zoo Lab, which is a little area where kids can touch different animals. Alex got to pet the Chinchilla! He liked watching it's little nose twitch like crazy! It was SO soft! After that we went to the Tropics Trail which is kind of like a tropical rainforest that you walk through & the birds all run free. There are loads of beautiful trees & plants all around & above you & Alex really like to look at all of those! Also part of the Tropics Trail is another aquarium, so we went to check that out too & Alex liked to watch all of those pretty fish too! He got hungry down by that aquarium, so we sat on the bench in front of it & I fed him a bottle. What a beautiful view! We didn't go outside to any of the exhibits. That will have to wait until spring! We are definitely going to have to invest in a family membership to the zoo. Alex did SO GREAT on his first visit to the zoo! He lasted an hour & 1/2, the whole inside part of the zoo, without making one bit of fuss. We had a great time!
Over the weekend we didn't do much. I had a ton of errands to run on Saturday, so Jorge & Alex had a "Daddy & Me" day. "Uncle Bill" came for a visit too, and the 3 guys had a nice time! On Sunday we went for lunch at Grandma & Granpa Molina's house.
OK, on to this week. Yesterday, 2/18, Alex had an MRI done on his left arm & shoulder to find out exactly what we're looking at with those muscles. We were going to go back to see Dr. VanHeest on Mon. 2/25 to go over those results, but may have to reschedule--more on that in just a minute. Today, 2/19 was another very hectic day. We had the appointment at Gillette's scheduled for 3pm, but we needed to leave at 1:30 to go to the Metropolitan Lab first to pick up Alex's x-rays we'd left there. Well, at 1pm I received a call from Dr. Lam's office telling me that the surgery to remove the skin tag on Alex's head has been scheduled for this coming Monday, 2/25 at 7:15am. We have to be at the U of M hospital at 5:30am. It will be a very early morning, and Jorge will not be able to go with us, so it will just be Alex & I and a VERY large stack of easy-read magazines (mind-candy to keep me from worrying the whole time). Well, after I received this call I had to call Dr. VanHeest's office to see if we could reschedule. No one could talk to me then, so I left a voicemail for Dr. VanHeest's secretary. But I think I am going to call again first thing in the morning. I think that I can probably still make it over to her clinic, which is part of the U of M while Alex is still in recovery, before I can go see him. It will be tight, but I think that if I reschedule, she (Dr. VanHeest) is booked out until April, which is too long to wait. Ooof. After that call today, I had to then call Dr. Sidler, Alex's pediatrician, to get him in this week for his pre-operative physical. Well, the only time that Dr. Sidler had open was 3pm this Thursday, 2/21, which is the exact time that the Early Childhood Intervention people were going to come to our house to do Alex's gross motor skills assessment. So, after the Dr. Sidler call, I had to call the Early Childbood people & leave a message saying that we will need to reschedule & gave them a short version as to why we needed to do so. After all of those calls, it was 1:45 & we were behind schedule, so I had to wake Alex up from his nap (it's very hard to keep him on a nap schedule with all of these appointments--rather bothersome), get him bundled & into the car. Today it was really dreary here, completely cloudy, foggy & it was misting. People were driving like drunken snails. We got gas, stopped by Metropolitan, grabbed the x-rays, then proceded, slowly, on to St. Paul & Gillette's Children's Hospital. Believe it or not, we still managed to make it on time. The gentleman that did the molding said that Alex was definitely his challenge of the week. ! He was a very nice man & I felt a million times more comfortable with him & Gillette's doing Alex's splint than I did with the other place. So, tomorrow (Wed.) we have nothing on the schedule, so far anyway. On Thursday Alex will have his pre-op physical w/Dr. Sidler at 3pm. The home nurse will be coming in the morning to our house to give Alex his latest Synagis shot, which is to help prevent RSV, a flu-like virus that can be deadly to infants. On Friday, so far, Alex also has a clear schedule. I think this time for our weekly field trip that we might go to the Minneapolis Institute of Arts Museum. I think that he will like to see all of the colors!
Then on Mon. 2/25, Alex will have the surgery to remove the skin tag from his head. The tag goes into the skull, so they will have to remove a small portion of the skull along with it, but that part of the skull will grow back together on it's own, just like the fontanel will. I'm not sure how long the surgery will take, but I think they had said 2-3 hours. The hospital stay time after that will be 4-5 days.
As far as Alex's home life is going, things couldn't be better. We just adore having him home with us & being a family--3 humans & 3 kitties (Farley, Frannie & Cookie)! Alex rolls over now, so you can't turn your back on him for even a second! He also tries VERY hard to sit up & sometimes gets it on his own. When we sit him up, he sometimes can hold his own for a few seconds, otherwise we lightly hold him around the waist. He "talks" like a crazed man & loves to grunt & growl! He has also taken to just squealing & yelling at the top of his lungs occasionally! He is beginning to recognize the cats & sometimes just stares at them & then smiles & laughs. It's just the cutest darned thing! He likes to pet them when they let him. Alex loves to play & REALLY loves to read books. One of his favorites is Dr. Seuss' "Mr. Brown Can Moo, Can You?". He is truly the light of our lives and we love him more than anything in the world. We truly are BLESSED to have such a wonderful, beautiful, STRONG little boy!!! He has the cutest little smile! I can't imagine a day without him. Sometimes I just have to hold him & hug him & then I never want to let go. I will keep you posted on Alex's progress after the surgery. Please be patient, as it might take me a little while. We hope that everyone is doing well, and we again want to thank everyone for all of your thoughts and prayers! It means so much to us! Please don't forget to check out the new photos on the photo page! We have more coming soon!
Thank you.
Love,
Jorge, Amy & Alex

Saturday February 9, 2002 4:23 PM CST

Hello All!
PLEASE CHECK OUT THE PHOTO PAGE!!! WE FINALLY POSTED SOME NEW PICS!!! :)
Well, another busy week with Alex and his doctors has passed. In my last journal entry I updated you on his appointment with Dr. Vanheest, the orthopedic surgeon hand/arm specialist and the plans for his right hand and left arm. If you missed that, please click on "previous journal entries" and check it out.
On 2/6 (Wed.) Alex had a follow-up with Dr. Hamlar, the ENT, for the tubes in his ears. Dr. Hamlar also confirmed our suspicions that Alex has an ear infection. It's not a major one, as he's had no fever and doesn't seem uncomfortable. So, for a week we have to irrigate Alex's ears with a vinegar water solution and then put antibiotic drops in. Alex doesn't hate that TOO much. He actually makes more of a fuss in just having to get dressed! :) I also discussed briefly Alex's surgery that he'll have on his lip. Even though the cleft lip appears as though it repaired itself in utero, the muscles in one spot still are not attached and Dr. Hamlar would go in & fix that. It's a relatively simple surgery, as far as surgeries go, but Alex will have to be in arm retraints for one week after the surgery so that he doesn't pull out the stitches. Boy, won't that be fun! Actually, Alex will probably hate it the first day, and then be used to it, just like he was when we first put his special shoes on.
On Thursday Alex went to see the orthopedic surgeon spine specialist, Dr. Ogilvie to follow-up on his scoliosis. Alex's spine curvature has not improved since Dr. Ogilvie saw him last 3 months ago. Therefore next week I have to take Alex to the orthotics lab at Abbott-Northwestern Hospital to be fitted for a scoliosis splint. I'm not exactly sure what it is, other than an "S-splint", but I'm sure I'll learn more on Tues. Alex also sees Dr. Lam for a follow-up after his spinal cord surgery on Tues. On Thursday, the Early Childhood Intervention team will be meeting Alex for the first time. This is a state funded program through the school districts for children with special needs. They provide teachers, physical therapists and occupational therapists that come TO YOUR HOUSE (!!!) and work with your child and give you things to work with your child too. It's an absolutely fantastic program! On Thursday they will be meeting Alex for the first time & getting some background on him. Then they will leave & discuss Alex & then set up a new appointment with all 3 of us to discuss the gameplan for Alex and how often they will be coming to see him.
Well, that's it for now! I hope you enjoy the new photos! I'll try & keep them updated now that I know how to do it!
Thank you all for all of your thoughts and prayers. Peace be with you.
Love,
Jorge, Amy and Alex

Tuesday February 5, 2002 9:55 AM CST

Hi Everyone!
We hope that everyone is doing well in this new year. Alex & I have been battling colds the last couple of weeks. We're both finally getting better, though Alex still has a really congested cough. It doesn't seem to bother him though! Jorge has been lucky so far & hasn't gotten the bug.
Alex is fully recovered now from his back surgery. You wouldn't even guess that just 3 weeks ago he'd had his spinal cord operated on! We can hold him like normal now, which is wonderful. He is just coming along so nicely! He loves to roll from his tummy to his back now, so we have to watch him every moment. He also likes to practice standing up, with our help of course. It's a little difficult, since his right knee doesn't have full mobility, making his right leg seem shorter. So I usually put a VCR tape under his right foot, and then it makes it even. He loves to just bounce up & down when we do this! Alex also loves to sit up. He still needs our help, but occasionally we can let go for a second & he'll hold his own. He likes to sit in the corner of the couch like a big boy! Alex also likes to try & push up on his tummy, but due to him not having full mobility with his left arm it's a little difficult as well. But he sure likes to try! He went to see the hand/arm orthopedic surgeon, Dr. Ann Vanheest, yesterday (Mon.) about his right hand and left arm/shoulder. He will probably have the surgery on his right hand in about a month to separate his fingers. The surgery will be done in two phases. The first part will be separating them, and the second part will be lengthening them. His pointer finger and ring finger have 2 of the 3 bones/joints they should have, but his middle finger only has one of the bones. After separating them, they will have to do some skin grafting and that skin will probably be taken from his elbow fold. They are going to coordinate that surgery with another surgery, though they're not sure which one yet. They think it will be the surgery to fix the hernia in his tummy at the omphalocele repair site. Dr. Vanheest said that the hand surgery & the shoulder/arm surgery could be done at the same time, but that just seems a little cruel for Alex. That would mean that both arms would be in casts at the same time & he wouldn't be able to suck either thumb. He's a thumb sucker & I think that would just be too mean. So, they would probably coordinate the shoulder/arm surgery with his right foot surgery, closer to 9 months of age. The shoulder/arm surgery is much more involved than the hand surgery. Alex has to have an MRI done of that region next Monday to see exactly what we're looking at. He has a muscle attached in the wrong place, therefore not allowing full mobility. One of the problems is, there is an artery right around there, so they don't know if they can just make a straight cut & detach it. The artery may go around that area, meaning they could make a straight cut, but it may also take a short cut & go straight through the area that needs detached, meaning they would have to go the roundabout way. I'm not sure exactly what all it entails, but I do know that if the artery is taking a short cut, the surgery will be even more difficult than it already is. There will probably be 3 different surgeons working on that surgery no matter what. Dr. Vanheest would be one, then there would be a plastic surgeon because an armpit will need to be constructed, and then I think Alex's grandpa, Dr. Molina, will be the 3rd, because the surgery involves the shoulder area & the chest wall, part of his areas of expertise.
Alex is waking from his nap now, so I will have to cut this short. Alex has 2 more appts. this week, one w/the ENT for the tubes in his ears & one for a follow-up on his scoliosis. I will keep you posted more after these appointments. AND soon we will have new pictures posted on Alex's website!!!
Thanks to everyone for your thoughts & prayers!!
Love,
Jorge, Amy & Alex
p.s. We've moved back home to our house in Minnetonka now & we're loving it! The 3 kitties sure love having us home too! :)

Wednesday January 23, 2002 1:05 PM CST

Alex is doing great! He had his stitches taken out yesterday and his back looks great! We still have to keep him horizontal when we hold him through Friday, but then we can hold him like normal again! :) His next dr. appointment is this Friday, with Dr. Walker, the "leg/foot" orthopedic surgeon. The appointment is to evaluate if or how well Alex's special little shoes are working. After that, Alex doesn't have any appointments until the first week in February. It's then that he will see Dr. Van Heest, the hand orthopedic surgeon, about his right hand, left arm and shoulder; Dr. Hamlar for a follow-up after having the tubes put in his ears; Dr. Ogilvie, the "back" orthopedic surgeon for a follow-up on his scoliosis. But in the meantime, Alex gets a little break from doctors! :) Alex is waking up from his nap, so it's time to run.
We hope everyone is well!
Thank you for your thoughts and prayers!
:)
Love,
Jorge, Amy & Alex

Wednesday January 16, 2002 2:18 PM CST

Hi Everyone!
Our little Hercules is doing fantastic!!! As you all know, he had his spinal cord surgery on 1/11/02 & he did great through that. Dr. Lam, the neurosurgeon, said he didn't even go near Alex's nerves, so there will be NO neurological damage! HOORAY!!! You don't know how relieved we were when he told us that in the waiting room! :) They did find a tumor on Alex's spinal cord, but it was benign and they removed it all. I asked Dr. Lam if there was any chance that the tumor might come back as a malignant tumor and he said NO! YEAH!!! He did say that the benign one could come back, but that it would just be removed again. This was by far the biggest, most risky of all of Alex's surgery--past & future. We are so happy to have it out of the way & to know how strong our little guy is. Alex is so strong, in fact, that instead of coming home from the hospital on Thursday, like they had originally thought, Alex was sent home on Monday!!!! We are ecstatic to have him home again! He is napping soundly right now! :) For two weeks from his surgery date, Alex has to be perfectly horizontal, whether we are holding him or whether he is lying down. His head cannot be elevated because it would put too much pressure on his surgery site, perhaps causing leakage of spinal fluid, which would be a very bad thing. When we are feeding him, however, we can slightly elevate his head, since it is such a brief period of time. Same goes if he has a dr. appt. He can sit in his car seat for very short periods. He can't go in his swing, though, which is very tough. Alex loves his swing! :) We'll be back to normal before we know it, and then he can swing to his little heart's content. The tubes they put in Alex's ears don't seem to bother him in the slightest. We put drops in his ears 3x daily for 7 days. As soon as Alex can sit up again, he is in for some culinary delights. That's right! Alex is going to start eating baby food! We have been giving him cereal, both rice & mixed, in his milk since he was 3 months, which he tolerates with no problem. I can't wait to see the different expressions on his face as he tries all of those new flavors. I'm even excited about the mess that will ensue! We are still staying at Jorge's parents house, but will be moving back to our own house in Minnetonka at the end of this month. The 3 cats will be very happy about that! Our dear neighbors, Rudy & Berniece have been so incredibly kind all of these months, taking care of our kitties, Farley, Frannie & Cookie twice a day. They truly are a Godsend.
Alex's next dr. appt. is on Jan. 22 to have the stiches taken out of his back. Then on Jan. 25 he sees Dr. Walker, the leg dr., to evaluate how well, or if Alex's special little shoes are working. So nothing major on the horizon! Thank You God!
And thank you again to everyone for all of your thoughts and prayers. You are ALL Godsends.
Our love,
Jorge, Amy & Alex

Sunday, January 13, 2002 at 09:28 AM (CST)

Hello to All!
Alex had his spinal cord surgery on Friday Jan. 11. The surgery lasted 4 hours, and Alex did great! His surgery time was moved from 7:30am to what they told us would be 11:30am, so we arrived at the hospital at 9:30, with Alex eating his last bottle at 5:30am. Unfortunately, they didn't get Alex in until 1:30pm, so he was pretty cranky at the end. You can't explain to a 4-month old why he can't eat, poor little pumpkin. But most of the time while waiting he did great!
He went in at 1:30 and they first put tubes in Alex's ears as a separate surgery, which only took about 4 minutes. Alex had some fluid in his ears, and babies with cleft palate are more prone to ear infections as well, so this is what his ENT doctor, Dr. Hamlar wanted to do. After that began the spinal cord surgery. Everything went very smoothly. They did find a benign tumor on Alex's spinal cord as well, and removed that. They also removed the skin tag that was on his back & they discovered that that went all the way through his spinal cord, so they had to completely core that out to remove it. Dr. Lam, the neurosurgeon who performed Alex's surgery, said that they didn't even go near Alex's nerves and that he should have no neurological damage at all. Thank You God!!!! Alex did so well in surgery in fact that, after spending 2 hours in recovery (mandatory for babies under 1 year) he didn't even have to go into the Pediatric Intensive Care Unit. He is now in his own room in the regular pediatric area. HOORAY FOR OUR LITTLE HERCULES!!! Alex is just doing great & moves his legs & feet & toes all around. He does have to remain on his belly the remainder of today, as well as the past 2 days, so that he is not lying on the surgery site. They monitor him closely to make sure that no spinal fluid is leaking. After today, he can lie on his back or in whatever position he chooses, though he does have to remain flat, meaning he can't sit up or be vertical.
He was very groggy, of course, the remainder of Friday & Jorge & I were with him until 10pm. Yesterday Alex slept a lot, but when he was awake, he was very alert & coo'ed & ooh'ed and I read him a bunch of books, which he enjoyed tremendously! Alex will remain in the hospital for 5-6 days. For 2 weeks Alex will need to be flat in whatever position we hold him in, be it on his back, tummy or side. He cannot be held vertically during this period. This is because it would cause too much pressure on his surgery site, perhaps causing leakage.
To make a long story short, Alex is just doing great! We are very relieved, as this was definitely his biggest, most risky surgery. Thank you to everyone for all of your thoughts and prayers! We are very fortunate to have such a wonderful support network around us. Thank You!!
Love,
Jorge, Amy & Alex

Wednesday, January 02, 2002 at 11:17 AM (CST)

HAPPY NEW YEAR TO ALL!
Thanks for tuning in to Alex's website in the new year! We hope everyone had a wonderful and SAFE New Year. We spent New Year's Eve at Senior Rubio's, who is originally from Spain & used to be a professional soccer player there, house. Rubio used to be Jorge's theology teacher in high school, as well as his soccer coach. Jorge then also became a coach along with Rubio once he was out of college. We spent it with Mr. Rubio, his wife Joyce & their daughter Maria, who was home from college. They loved spending time with Alex. We came home to Jorge's parents around 9:30 & put Alex to bed & then at midnight we toasted the New Year with Jorge's Mom & Dad. It was a very nice night!
So, what's going on with Alex you ask? Well, today he has an appointment with Dr. Angie Sidler, his pediatrician. He will get a vaccination, as well as a full physical & check up. He needs to have a full physical because next Fri., Jan. 11, Alex will be having surgery on his spinal cord to untether it. It is a big, serious surgery, with the normal risks, as well as the risk of neurological damage, so we are understandably nervous. But we just aren't dwelling on it. It does us no good to dwell on it & be in a constant state of anxiety. We'll save that for when he is in the actual operating room. The surgery will be done by Dr. Cornelius Lam, one of the best Neurosurgeons in the country, and the surgery will last roughly 4 hours. Dr. Lam is a really wonderful, caring man and we completely trust him with our precious little boy. Alex is so strong. With our love and prayers, he will come out of this like the little Hercules that he is.
On 12/31, Alex had the cast removed from his left leg. His little foot looks BEAUTIFUL!!!! It looks completely normal now. Dr. Walker did a fantastic job! Also at that visit, Alex was fitted for and received his special little shoes. They are little leather shoes that have a bar going across between them. These are to hold Alex's feet in the correct placement. Alex HATED them that first day, but is getting used to them now. He has to wear them 23 hours a day for the first 3-4 months. After that, he will only need to wear them at nap time as well as at night when he's sleeping. He will need to do that routine for years. He will of course get the shoes changed as he grows. I'm not sure how often that will be. They generally fit the children in shoes that are a little big in the first place to allow for growth. The toes are also open, to allow for growth. The shoes are white & kind of look like the old Stride Rite shoes that babies always used to wear before all of those funky new styles came along. With the bar in between the shoes, it looks like Alex is on a snowboard! He looks like one hip & happenin' dude! :) Dr. Walker will see Alex in one month to check on the progress with the shoes.
Also next week, on 1/9, Alex has a return appointment with Dr. Hamlar, the ENT, for his cleft lip & palate. He will also have another hearing test while there. We will discuss more the timing of his surgeries & whether or not Alex will need tubes in his ears.
This Friday, 1/4, Alex will experience his first REAL road trip. We will be leaving early in the morning to drive to Shenandoah, Iowa to have Christmas with my family. We will be there until Monday, when we'll leave again in the morning to come back up here to Minneapolis. Grandma & Grandpa Beavers are very excited to have little Alex coming! Brian, Christy & Brielle will also be there, so we are very excited to see everyone!!! I think there will be a ton of people wanting to meet Alex for the first time! His "Aunt" Wendy Palmer will be coming to visit him, as well as his "Aunt" Gina Morhain. I'm sure there might be others too! We'll be having our Christmas on Sat. morning & opening all of our gifts. It will be wonderful!
Speaking of Christmas, Alex had a fantastic first Christmas up here. Christmas Eve was spent at Jorge's parents house with his whole family. Alex was very spoiled with all of the wonderful gifts he received from family & Santa! Christmas morning the three of us went to our own house & had our Christmas there. It was truly very very very special to be able to have our precious little boy at home with us. You can't even imagine. The cats loved having us home as well! We actually spent the remainder of the week at our house, which was fantastic, and returned to Jorge's parents' house on Sunday. Jorge has been playing soccer on Sun. nights at a place that is only 5 minutes from his parents, so it's easier to just be here at that time. We will be moving back to our house in Minnetonka some time after Alex's back surgery, probably at the end of January, as Alex will be in the hospital for approximately 5 days after his spinal cord surgery.
Again, we hope everyone had a safe & Happy New Year! If you are still reading Alex's updates, please sign in on the guest book, even if you have previously. We love to hear from you as often as you like!!
HAPPY NEW YEAR!
May 2002 bring everyone great things, many happy, safe times, and good health!
Love,
Jorge, Amy & Alex

Friday, December 21, 2001 at 02:05 PM (CST)

HAPPY HOLIDAYS EVERYONE!
Alex is having a week ALMOST free of doctor appointments!! YEAH!!!! He would have had the whole week free, but yesterday I took him in to see his pediatrician. He has been battling this cold thing for so long (since the 1st wk of Dec.) that we just wanted to make sure that it wasn't anything else. It wasn't. Dr. Sidler (the ped.) said that with little ones this age, colds can easily hang on for 3-4 weeks. YUCKY! They did do a chest x-ray just to be safe, as babies with cleft palate can aspirate into their lungs easier. His x-rays were clear---YIPPEE! She said to just give some Tylenol if he seems uncomfortable. But Alex doesn't seem to really mind it. His nose is just always really stuffy. I think it bothers Mommy & Daddy & Grandma & Grandpa much more! That's a good thing though, as Martha Stewart would say. (Alex & I watch her every day!).
The surgery on Alex's left foot last Wed. went off without a hitch. He was in & out of surgery in about 40 minutes! He got a pretty red cast on his leg to go with the season! This cast will remain on for 3 weeks and then on 12/31 he will have it removed. After that, on the same day, he will be molded for special plastic braces that he will wear on his legs/feet. (please see prev. journal entry for more info on this). His right foot/leg are without a cast until those braces are made.
Alex's MRI results from last Thurs. were all good news (see previous journal entry for more info) . The skin tag on his head does go into his skull, but does NOT go into his brain, which is fantastic! The MRI on his spine showed that the spinal cord is tethered to the skin tag which is on his back. It also showed that there is no fat involved, which is a good thing Dr. Lam (the neurosurgeon) said. Alex's surgery on his spinal cord will be on Friday Jan. 11th. We have to have him there at 5:30am to prep him for the 7:30am surgery. (WOW THAT'S EARLY!). The surgery will take around 4 hours, after which he will go to the Pediatric Intensive Care Unit (PICU). The surgery is being done at the University of Minnesota, like the other surgeries have been. They estimate that he will be in the hospital for 4-5 days after that. We are nervous about this surgery, but with lots of love, strength & prayer, and with Alex's good will to fight like always, Alex will come through like the little Hercules that he is! The surgery to remove the skin tag on his head will probably be performed around 2 weeks after this. (please see prev. journal entry for more on this).
Alex enjoyed himself at Grandma & Grandpa Molina's Christmas party on Sat. People couldn't get enough of him! He didn't fuss too much!
We are looking forward to Alex's first Christmas! Christmas Eve will be spent at Jorge's parents, opening presents, as is tradition. Then on Christmas Day, Jorge, Alex & I will go home to our house to open gifts, as is our tradition, and hang out with the 3 kitties. We will be spending Christmas with the whole Beavers family down in Shenandoah the first weekend in Jan. We can't wait to see them all again!!!!
OK, Alex is up from his nap, so I need to run! We wish EVERYONE a VERY HAPPY HOLIDAY SEASON!!!
Thank you for all of the prayers! Please keep them coming, especially for his upcoming surgery.
Love,
Jorge, Amy & Alex

Tuesday, December 11, 2001 at 02:25 PM (CST)

Well, Alex is having a busy week!
Yesterday (Mon.), Alex got his casts off of his legs/feet! YIPPEE!!! It is such an INCREDIBLE feeling to be able to finally feel his little legs and feet! He feels so light now! He loves to kick his legs around. It must be a fantastic feeling for him too! Unfortunately, this new-found freedom will not last too long. On Wed. 12/12 Alex will have surgery on his left foot to lengthen the tendon. It is a relatively simple surgery, as far as surgeries go, and he will only get a local anesthetic applied. After the surgery, his left foot/leg will be put into a cast for 3 weeks. The cast will not be changed in those 3 weeks. His right leg/foot will remain without a cast during this time. After the cast comes off of his left leg, Alex will most likely be fitted for some special shoes that will have a bar going across between them to hold his feet in position. Because Alex's right foot is a congenital vertical talus, as opposed to a club foot, they are not sure if these shoes will work. If not, special plastic braces will be molded to fit his feet. He will need to wear these (either the shoes or braces) for 24 hours a day for I think 3 months. After that, Alex will have to wear them at night when he sleeps and during naps. He will have to do that routine, the doctor says, for 3-4 years. Now, when Alex is about 6 months of age (in 3 months), he will have surgery on his right foot. For now, we are just enjoying getting to feel our little boy's legs & feet! They are so darned cute!!!
Today Alex had his follow-up appointment with the neurosurgeon about his spina bifida. He said that Alex is ready for the surgery on his spinal cord and to remove the skin tag on his head. This Thursday Alex will have an MRI done on his spine and his brain. This will be considered the road map for the surgeries. The dr. will not operate on both things at once. This is because, if, after the surgery, there is signs of neurological damage, they wouldn't know if it was due to the surgery on the head or the back. The spinal cord surgery will be done first. We don't have a date yet, but it will be in early to mid-January. After that surgery, depending on how serious it is (we won't know this until after the MRI), Alex will have about a week or so in the hospital. The first 2 days of that stay he will need to remain flat on his tummy. They will keep him sedated in order to do this. It is a risky surgery, but the doctor is quite hopeful, as Alex can move everything freely now, that there are no nerves involved, thus making it a less risky surgery. The surgery will take from 3-5 hours. Now, the surgery on his head to remove the skin tag will be determined by the MRI as well. The neurosurgeon does not THINK that the tag goes into Alex's brain, but won't know until the MRI results are back. He is pretty certain that the tag does go through the skull. There is a divet in Alex's skull where the tag is. Most likely, part of Alex's skull will need to be removed, probably a section about the size of a nickel. This will leave him with a soft spot there, very similar to the soft spot that all babies have at the front of their skulls. The skull will grow together again on it's own to mend that, just like it does at the front of the skull. As long as there in no brain tissue involved, there is less than a 1% chance of having any neurological damage from that surgery. This surgery will take about 2 hours, as long as there is no brain tissue involved. We are nervous about both surgeries, but we just have to remain positive! Alex is a VERY strong little boy & will handle them like a champ, just like he has everything else! We will be praying extra hard!
On Wed., as I said earlier, Alex will have the surgery on his left foot to lengthen the tendon. This will be outpatient & we'll be able to take him home as soon as he's casted again.
On Thurs., as I also said earlier, Alex will have the MRI done on his spine and brain. This will take roughly 3-4 hours, with the recovery time. They will sedate him quite heavily with chloralhydrate (sp?) so that he will keep still for the MRI. If he moves, they have to start over. We will be able to take Alex home after the sedation wears off & he is eating again, which will be about 1 hour. He will not be able to eat for 4 hours prior to the MRI, but he can have water or Pedialyte, so hopefully that will sooth him enough. The doctor will call either Thurs. night or Friday with the results of the MRI & then we will discuss the surgery dates and what the surgery will entail exactly.
On Friday, all Alex has to do is rest. He has a cold right now, so he needs his rest--especially with everything else that is happening this week! I (mommy) on the other hand, have to have 2 cavities filled. ICK.
On Saturday night, Grandma & Grandpa Molina have their annual Christmas party. Alex has a special little outfit that he's dying to wear & show off in! I'm sure he will be doted on plenty!
Thank you again to everyone for their thoughts & prayers. Please keep them coming & keep in touch! It means the world to us!
Love,
Jorge, Amy & Alex
p.s. We are working on figuring out how to get new photos on the website. Please keep staying tuned to that section of this site & please have patience with us! :)

Tuesday, December 04, 2001 at 02:09 PM (CST)

Hello everyone!
Alex is doing great & growing like a weed! We had Thanksgiving at Grandma & Grandpa Molina's house & my whole family also got to visit! It was the first time Brian & his family got to meet Alex. Brielle gave him lots of kisses! It was also the first time that Grandma & Grandpa Beavers had gotten to see Alex outside of the hospital! What a wonderful blessing!
Alex has been getting his casts changed still every week. However, this coming Monday, Dec. 10 his casts will be removed. This will be in preparation of having surgeries done on each foot. The surgery on his left foot will be done on Wed. Dec. 12, and is a quite small procedure, with the doctor lengthening the tendon in his foot. This procedure will only take about 15 minutes. We have to be at the hospital at 6:15am!! YIKES! After the procedure, Alex's left leg/foot will be put back into a cast again, and this cast will stay on for about 3 months, without being changed. Now, the right foot will not be operated on until Alex is 6-7 months of age. It is a much more involved surgery & the doctor wants Alex & his foot to be a little bigger. That surgery will take around 3 hours.
Last week Alex saw the ortho-spine specialist about his scoliosis, to see whether or not he will need a back brace. The good news is--NOT FOR NOW! They did another x-ray of his back and compared it to an x-ray that was taken on Oct. 2. On the 10/2 x-ray, Alex's spine was at 44 degrees. Last week's x-ray showed his spine to be at 38 degrees! So it is slowly correcting itself, and we pray that it will continue to do so. The correct angle a back should be at is 0 degrees. Alex will be seen by this doctor again in 10 weeks.
Tomorrow (12/5), Alex will be seen by the Ear, Nose, Throat doctor (ENT) for his cleft lip and palatte. This is the one doctor that we never got to meet, all of those weeks in the NICU, so I am anxious to hear what he has to say. I'll keep you posted.
Alex has a small herniation in his tummy of his intestines, resulting from his very 1st surgery. His tummy muscles weren't quite strong enough in one area to hold his intestines in. This will need to be repaired, but it is anything but urgent, so it will be paired up sometime in the future with another surgery, so that Alex doesn't have to go under anesthesia so often.
We are quite anxious for the meeting with Alex's neurologist, for the spina bifida, which will take place on Dec. 18. It is then that they will do a repeat MRI on Alex's back, which will then in turn be used as a road map for the surgery that will be performed on his spinal cord. We expect this surgery to be done sometime in January. We are also going to ask that on 12/18 they also do an MRI of Alex's head for the skin tag that is there, to see what it contains. We hope that it is just fatty tissue, and we will have that removed at the same time as his spinal cord surgery.
We are all doing really well, and we thank everyone for the continued prayers & support!! It means the world to us!

Love,
Jorge, Amy & Alex

Monday, November 12, 2001 at 01:55 PM (CST)

HI EVERYONE!
Sorry that it has taken so long for us to get Alex's website updated. We'll try to do better. We did have a good, albeit BAD reason for the delay. Alex came home on 10/30 and on Halloween we dressed him up in a peapod outfit. He was so cute! We got it on film & video! However, on 11/4, Amy was admitted to the hospital for postpartum depression & remained there until 11/10. She is home now (we are staying at Jorge's parents for a while) and is doing much better, and continuing to get better every day. She will be doing an outpatient group therapy plan for 2 weeks, 6 hours a day starting tomorrow. I've (Amy) been reading a book that Jorge bought me by Marie Osmond on her journey out of postpartum depression, and it's very helpful to know that I am not the only one who has felt the was that I did. Thanks to everyone for the prayers & good thoughts!
Alex is doing very well & enjoying Grandma & Grandpa Molina's company. He's eating well & growing a lot! He has gotten his casts on his legs changed once since being home & will get them changed again this Friday. He has his follow-up visit with the surgeon who put in his gastrostomy tube tomorrow, and on Wed. he has his first visit with his pediatrician. We've learned that Alex has beautiful dimples from his smile :) and he likes to grab onto his bottle when drinking sometimes! He's also getting chubby & his little chub on his legs sticks out over his casts on top! It's too darned cute!!!! The weather up here has been gorgeous, so we've taken Alex out for a walk, which we'll be doing again today, and he really liked it! Alex also had his first restaurant experience on Friday, and he handled it like a champ!! :) With Thanksgivig approaching, the Beavers side of the family will be joining the Molina side at Jorge's parents house, which should be loads of fun! It will be the first time Brian, Christy & Brielle have met Alex! We were going to have Thanksgiving at our house but have decided to play it safe & not put too much pressure on Amy & have the whole family at Jorge's parents. We can't wait!
Thanks again to everyone for the prayers & continued prayers. We all get stronger every day! Stay tuned to Alex's website & we'll try & keep it updated more often!
Thank you,
Jorge, Amy & Alex

Monday, October 29, 2001 at 11:15 AM (CST)

ALEX IS GOING HOME TOMORROW!!! :) This is the plan as long as the doctor who did Alex's surgery last week gives it the ok, which they think he will! It would be sometime between noon & 3pm. WE'RE SO EXCITED!! We just want to get home & be a family! "Rooming-in" on Sat. went well, as far as Alex is concerned. Mommy only got about an hour of sleep due to the bed being like a cement floor with springs coming through. But it proved to us that we can take care of Alex! Pediatric Home Services had come by our house on Sat. morning to train us on the Kangaroo Pump, which is what we will use for Alex's feedings during the night by slow drip. In the day we will feed by bottle & then what he doesn't finish in the bottle he will get through his tummy tube.
Now, we will still have this website after Alex is discharged (we can have it up to a year free of charge) but I may not be able to update it quite as often, as I'll be busy taking care of my little boy at home & being normal Mommy! But I will update it, so please stayed tuned to it.
We can hardly believe that the time is here! YIPPEE YIPPEE YIPPEE!!!!!!!
:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) ;) ;) :)

Friday, October 26, 2001 at 11:55 AM (CDT)

Alex is going to be off of all monitors today!! That means NO WIRES or anything!! That means we can pick him up without disconnecting something or getting things all tangled up! This means closer to going home! :) Right now, he is doing his "car seat trial". That means he sits in a car seat for 2 hours with all of his wires hooked up, to make sure that positionally he's able to sit in a car seat without problems breathing, etc. He started that at about 11:30. He's doing fine so far! I'm sure he'll pass with flying colors! After that, he will be off of all monitors!
Alex started on breastmilk again yesterday at 1/2 an ounce every 3 hours, and then today they up'ed his volume to 1 oz. (30cc's) at 11am, then at 2pm he'll get 40cc's, then at 5pm he'll get 50cc's & then they'll hold him at 50 for the next 3 feedings (every 3 hours) to make sure that he can tolerate the volume, then will up the volume from there if everything is going right. The gastrostomy tube is not hard to work, but it is definitely something that you have to get used to. It's a little weird poking something into your baby's tummy.
Alex also had a repeat ultrasound done on his kidneys. They had evidentally been large on the previous one, and they want to see what they look like now.
Jorge and I are planning on "rooming in" at the hospital this weekend. What that means is, we will have our own room here at the hospital, and we will have Alex with us. We will take care of him ourselves, but if we have questions we can call down to the nurses with questions. This will give us a little "taste" of what it will be like to take care of Alex on our own, but with that little safety net of having the nurses right downstairs. The doctors are talking like Alex might be able to come home on Tuesday! YIPPPEEEEEE!!! I've put a new picture up on the website--take a peek at our little man's wild hair! :)

Wednesday, October 24, 2001 at 02:52 PM (CDT)

Alex is resting peacefully today. He's on a very small dose of morphine to take the edge off after his surgery. Today will probably be the last day of that & he'll just be on Tylenol tomorrow. He is only on a drip IV feed, as he will not start his normal feeds until tomorrow or Friday. We hope tomorrow, but I've got a feeling the doctor's won't want it to start until Friday. During the surgery yesterday, the surgeon accidentally nicked Alex's esophogus & put a small cut into it. He repaired it, but because of that, Alex's feedings are delayed. Needless to say, this is a bummer for us. But dwelling on it won't do any good, so we're just thankful that the surgery went as well as it did, and that Alex is doing as well as he is. We're waiting now for Alex's bowels to start doing their job now again as well, as after being under anesthesia it takes them a bit to get working again. Then Alex has to get his feed volumes back up again before he can go home. So, basically, after feeds start again, the ball is in Alex's court. The quicker he gets his volumes up, the quicker he can come home. We are still shooting for Halloween or before & the docs say that that is still a do'able goal. We just pray that things move really quickly now & that we can get our little strong man home & be a family finally. Please keep the prayers coming! :)

Tuesday, October 23, 2001 at 03:08 PM (CDT)

Alex is out of surgery & recovering now. He did great! We will keep you posted on when they think he will be able to come home, but the surgeon thought, as far as he was concerned, that Alex could go home in 3-4 days! Hopefully the other docs will agree with him! Then we can get on with being a family!!! HOORAY!!!!!
:)

Tuesday, October 23, 2001 at 08:59 AM (CDT)

Today is Alex's big surgery day! Today he will be having a nissen, a gastrostomy tube put in, his "tongue-tied" tongue untied and will be circumcised. He will not have his skin tag removed as they want to evaluate it more with another MRI at 3 mos. of age before removing it. Evidentally there is a hole in his skull that the tag goes into & they want to make sure it is only fatty tissue in the tag. Alex can't eat this morning due to his surgery, so he is unhappy. Mommy & Alex are walking around, Alex in his Baby Bjorn carrier, which is a lifesaver. We'll keep you updated after the surgery.

Monday, October 22, 2001 at 11:22 AM (CDT)

HIP HIP HOORAY! Alex will be having surgery tomorrow. Mind you, we're not happy that he's having surgery so much, but we're happy that he is because it means that he can go home after he recovers from it! Tomorrow at 12:45 he will be having the surgery to put in the gastrostomy tube and to perform the nissen. He will also be having the skin tag on his head removed, having the "tongue-tied" skin on his tongue clipped so that his tongue is freed, and also having his circumcision performed. It will be a busy day for Alex Gabriel Molina! I'm sure that Mommy will be a nervous wreck!! Hopefully then, Alex will be home within a week! :)
Alex had a good weekend & slept through the nights. We've switched him to "on-demand" feedings during the day, and then putting him on a slow-drip feeding during the night to eat his normal amount as well as make up for what he didn't eat during the day. We've also had him switched to LactoFree formula. He still gets breast milk, but as I don't produce enough milk to get him through the night, he has to be supplemented with formula.
Grandma & Grandpa Beavers are up visiting him yesterday & today as well.
We can't wait to get our little boy home!!
:)

Friday, October 19, 2001 at 03:19 PM (CDT)

The surgery to put the gastrostomy tube in & to do the nissen did not happen today, unfortunately. The word now is that it will happen on Monday, but we do not have a set time for it yet. Hopefully we will have that before the end of the day today, and it won't just be a surprise on Monday. But, as long as it happens on Monday, I guess we'll take it either way--set up or surprise. We are just getting extremely frustrated with how long it is taking to get this set up. Since this is the only thing that is keeping him here in the hospital, we could've had him home a while ago if we could've just gotten this scheduled. Aaargh.
Alex has been awake a lot today, but is sleeping now. I gave him a bath & shampoo & he slept right through the whole thing! Now he smells fantastic! We use that Johnson & Johnson Nighttime Bath, which is lavender & chamomile. Mmmm!
Alex also had his casts changed today. His left foot (the one that is clubbed) is making good progress, as the doctor expected, and his right foot (the one that was backwards) is progressing though not as much as the left, also as the doctor expected. The castings will continue until he's 3 mos. of age, and then he will be evaluated to see if/when he will need surgery. If he does need surgery, that would not be performed until he was about 6 mos. of age. He's doing well though! The doctor is very happy with his progress! It was really nice to see his little legs today! They are so cute!!! :)

Thursday, October 18, 2001 at 12:07 PM (CDT)

Well, Alex had an icky night last night, reflux-wise. Today we are going to try something different. We are going to do "on-demand" type feeding in the day, where I will bottle him as he wants it (before he was fed every 3 hours whether he said he wanted food or not) and then at night, he will be on a slow drip for the remainder of what he did not eat by bottle during the day. We're hoping that this will make him more comfortable & less gassy. He handles breast milk fine, but at night he usually has to have formula, as I don't produce enough breast milk in the day to make it through the night. And the formula is what seems to upset him. We've discussed switching the formula to Isomil, but they want to see what happens with the surgery (to put in the gastrostomy tube & do the nissen) & see if he needs to switch afterwards. As far as the surgery goes, he may have it done tomorrow, or Monday at the latest. We should find out today if it will be done tomorrow. We hope that it's done tomorrow so that we can get our peanut home & be a family finally! This is the big thing right now, the surgery, and we've been waiting & waiting for this, so that's why the website hasn't been updated lately.
Next week Alex will be seen by the orthopaedic spine specialist to evaluate his scoliosis & when he'll be getting his back brace.
We want everyone to know how much we appreciate all of the thoughts, prayers & comments from everyone. It means so much for us to know that we have such a nice support circle out there. The prayers have helped & will continue to help us on Alex's road to recovery! THANK YOU!
I will update this when I've heard back about the surgery.

Monday, October 15, 2001 at 03:53 PM (CDT)

Alex had good nights over the weekend! Right now, the only thing that is keeping Alex in the hospital is his feedings. He needs to take the food by bottle, not by the tube in his nose. He is doing better, but it is progressing rather slowly. ALTHOUGH!---today at Alex's 12noon feeding he took all but 5mm of his feeding by his bottle!!!! YEAH ALEX!!!!! I just keep telling him that he's got to show these doctors what he's made of---STEEL and DETERMINATION! :) We will still be getting the gastrostomy tube put into his tummy for feedings, in case later on, after surgeries, he's just not quite up to eating by bottle. But they say he also has reflux & therefore needs a procedure called a "nissen", which ties off a valve in his tummy to keep him from refluxing. We are torn on having this procedure done however. Or I should say I am torn, and Daddy is against it. The reason I am torn is because the gastrostomy tube can cause reflux to worsen, and if it does worsen and we don't get the nissen, then he would have to go in for a second surgery. We are going to talk to the doctor tonight at 5pm when Jorge gets here. Other than that, Alex was awake (and not fussy) from 12noon until 3:30pm today!! He & Mommy just hung out & talked & played! It was heaven!!! :) We just want our little boy home so we can experience heaven at home!!!!!!!!!!

Friday, October 12, 2001 at 10:28 AM (CDT)

Alex had another restless night. He was up most of the night, just like the night before, crying & in a lot of discomfort. Even though the upper GI showed he had no reflux, the nurses believe that he does due to the discomfort he's in after feeding, even up to an hour & 1/2 after feeding. He's now in "reflux precautions", so the head of his bed is raised 30 degrees, and he's going to be put in some kind of sling thing to keep him midline. I haven't seen this put into use yet, as right now he's asleep & swinging in the swing, so I'm not sure how the sling works yet. We are still waiting to hear from the surgeon as to when the gastrostomy tube will be put in. I'm pushing very hard on this, because we just want our little peanut home!!! Again, we'll keep you posted! Right now, it's time for Mommy to go & hold her little boy!

Thursday, October 11, 2001 at 11:12 AM (CDT)

Alex had an upper GI test this morning to test for the amount of reflux he had and we are waiting to hear back on that. His nurse this morning said that he did pretty well though, and that he had just mild/moderate reflux. Per the recommendation of Alex's neonatalogist, we are going to have a gastrostomy (sp?) tube put into Alex's tummy. This has been decided for a number of reasons. Feeding is the only thing that is keeping Alex here in the hospital now, and since bottle feeding is progressing slowly, this tube would act as a bridge so that if Alex didn't take his whole bottle, the remainder could be given to him via the tube. It's not meant as a substitute, but as a bridge so that we wouldn't need to worry if Alex is getting all of the nutrition & calories he should be getting. And with all of Alex's upcoming surgeries, the tube will be a very good thing, as babies sometimes don't feel like eating after surgeries, and the tube would prevent us ending up at the hospital because Alex wasn't eating. After the tube is put in, we could have him home with us in about 5 days, as long as the recovery from the procedure to put the tube in goes well! Can you believe it!?!? It's very exciting for us, and at the same time, truthfully, kind of scary. We've always had all of these nurses as a lifeline if we had any questions. But don't get us wrong, the only thing we want now is to get our little boy home!!!!! :) We'll keep you all posted on when this tube procedure will be.

Wednesday, October 10, 2001 at 11:08 AM (CDT)

Yesterday Alex had an ultrasound done on his hips, and today the results say that they're getting better! Before, they had had too much range of motion at times, and that has improved. Also, one of the sockets was a bit "off", and that is also improving. YEAH FOR OUR LITTLE STRONG MAN!! :) Alex also had an EEG on Monday, and that came back normal for the first time, so Alex is now off of the phenobarbital (anti-seizure medicine). YEAH AGAIN!!! Our little boy is such a fighter! We have been busy feeding him with the Haberman feeder and he's doing great on that as well. He just needs to stay awake for his feedings! That's what the problem is generally, he just gets too tired & can't finish the feeding with the bottle & the rest has to be done by tube. They are decreasing the time frame in which he feeds from 1.5 hours to 1 hour to .5 hour, so this should help, because then he will be more hungry when he feeds, therefore will suck harder. This is the only thing right now that is keeping him from going home! It's frustrating! We just want our little peanut home!!!
Last night Mommy & Daddy got to take Alex into a private room in his crib & feed him, read to him, play with him. IT WAS WONDERFUL!! Almost like being a little family! No nurses (not that we mind them being around!), no alarms, nothing. It was really special. What a fantastic way to spend Alex's one month "birthday"!!!! And we've been told we can do that every day now! We can't wait! We'll do it every night once Daddy has arrived from work! :)
Alex was supposed to have a test today called an EMG that tests the nerves ability to transfer information, but evidentally there was some type of communication snafu, so that has been cancelled for today & they're hoping to do it either tomorrow or Friday.

Monday, October 08, 2001 at 09:15 AM (CDT)

ALEX IS OFF OF HIS OXYGEN!!!!!! :) This is a big milestone, and one step closer to home!!! YIPPEE!!! He was off of his oxygen all last night & now today. He's doing fantastic without it! Now all we need is for him to take all of his feeding by mouth & we'll have him home! Hopefully in one week, two at the most! (that's me talking. the doc's didn't say that, but I think that's what they think, too) Alex had a restfull weekend. Daddy & Mommy talked to him a ton. He smiles at us, and it's the cutest darned smile we've ever seen in our lives!! He's meeting other milestones too, like putting his hands together in front of him; smiling; putting his fingers in his mouth. It's just sooooo exciting to watch these things!! Today he has an ultrasound of both hips, as well as his circumcision. OUCH! Mommy will be with him for that (lucky me) but Daddy will not, as he's working. Mommy will be holding the gauze soaked in sugar water that Alex will suck on. This gets the endorphins kicked in, and it makes like a natural high/anesthesia. He will also have a local anesthesia on his pee pee. Mommy is scared for Alex, but they assure me that it's not that bad for the babies. We'll see! We're just so proud of how strong Alex is, and of how well he's doing! No oxygen! YEAH!!!! One less tube! :)
***It's 12noon now, and Alex's circumcision has been postponed due to a conflict in schedule. I'm not sure when it will be rescheduled, but hopefully sometime this week!

Friday, October 05, 2001 at 04:04 PM (CDT)

Today Alex drank 1 oz. from a bottle!!! This was nearly half of his volume of feeding, so that means one step closer to going home! YIPPEE!!! He did really well, and was really relaxed during the feeding.
Today we also met with the neurosurgeon. Alex will have surgery on his spinal cord at around 3-4 months of age. He will have a repeat MRI done on his spine at 3 mos. of age, and then probably shortly after that, the surgery will be performed. It is safer to do the surgery at that age, as the spinal cord is bigger, and Alex is bigger & stronger. The surgery itself will take 5-6 hours to perform approximately. It's a scary concept, but the surgeon says it's a quite involved surgery, but the risks are limited. Our little precious boy is strong, so I'm sure he'll pull through!! For the first 48 hours after recovery, Alex would be on his tummy, and then after that he could roll around the surgeon said. He would be in the hospital for about 5 days afterward (we pray that at that point Alex is already home with us!!!) and then could go home. We would have to be careful the first couple of weeks that we kept him pretty much flat & that his head was not above his heart, to alleviate pressure on the spinal cord, so when feeding, we'd have to make sure that we kept him flat.
Other than this, I decorated Alex's casts today (see new picture on photo album page!), we've been reading some Winnie the Pooh stories, and Alex has been snoozing. He was awake for Daddy when he came for the meeting this morning with the neurosurgeon though, which Daddy loved! Grandma & Grandpa Molina both came to visit today as well.

Thursday, October 04, 2001 at 03:11 PM (CDT)

Alex had his casts changed yesterday morning. Mommy still has to bring out her Sharpie markers and decorate them. This time it will be pumpkins! His little feet/legs are progressing nicely. The doctor was here so early to change the casts that we didn't get to see his feet out of the casts this time, but we were told that the doctor was pleased with the progress. We think they look great! Alex also had an xray done on his chest yesterday, and that was clear still. YIPPEE! Because he has been spitting up some (gee, babies don't do THAT, do they???) they just wanted to make sure that he wasn't aspirating into his lungs at the same time, and he wasn't. YIPPEE AGAIN!
Today, Alex & I (Mommy) had a great moment! I got to feed him for the first time today w/a Haberman feeder. This is a special bottle for babies with cleft palates & other feeding problems. He had 10 cc's!! :) He handled it pretty well. He fell asleep half way through it, then I changed his diaper which he had made nice & poopy (p-u!), which woke him up again (he's not fond of having his diaper changed!) and so we finished up the feeding. Alex seems to have his days & nights mixed up--sleeping most of the day & staying up at night, so we have to try & remedy that before we take him home! (we still don't know when that will be).
The spine neurosurgeon will be coming to meet with me & meet Alex tomorrow at 11:30. This is when we'll find out when Alex needs to have the surgery done on his spinal cord to detach it. Jorge's Dad thinks that it will probably be done next week. I guess we'll find that out tomorrow. We're nervous about it, but Dr. Molina says it's not that big of a procedure.
On Monday, Alex will be having an ultrasound done of both of his hips to find out if we're looking at subluxation or dysplasia, or what. I assume that the spine/orthopaedic surgeon will read that & contact us soon afterward.
On Wed. Alex will have the EMG test done, which is the electrical current test for his nerves in his leg. He will also have his casts changed on that day.
Alex & I have been having a cozy day & reading Harry Potter! His nurse filmed my first bottle feeding with him for me with our digital camera! Gotta capture every moment!

Tuesday, October 02, 2001 at 06:17 PM (CDT)

Alex had some spit-ups today, so they've lowered his feedings a bit, and then they will only up the volume every 3rd feeding, in place of the every feeding as it had been. Alex's IV in his head got jostled somehow, so they are now replacing it. This is why Mommy is at the computer. Daddy is at his side. Mommy would cry. We are still waiting to hear from the neurosurgeon. He is out of town until Wed., so hopefully tomorrow we'll hear from him. We are also still waiting for the ear, nose, throat doctor to see Alex for his cleft palette. Mommy & Daddy have both been holding Alex a TON today! And we've been reading the 2nd Harry Potter book to him, which he loves!

Monday, October 01, 2001 at 04:13 PM (CDT)

Alex's MRI results came back today from Radiology, but we are still waiting for the neurosurgeon to contact us & explain what the plan of action will be. What we do know is that, the little pocket on Alex's back is nothing much--only fat. BUT, Alex's spinal cord is tethered down in the lower lumbar area, so that will require surgery. There is a sense of urgency to this, as it would inhibit his growing, so we are quite anxious to speak to the neurosurgeon. I did speak to one of the neurologists today, and she was the one that filled me in a bit, but said that the surgeon was the one to speak to. The neurologist did check Alex's reflexes in his arms/hands and said that they were normal. She is waiting to do the ENG test, which is the electrical current test that will be performed on his legs to test how well the nerves relay information through & to the spine. She wants to rule out a disorder called Anterior Horn Cell Disease. This test will probably be done next Wed.
We thought that the ENT (Ear, Nose, Throat) doctor was going to come by today, but as of right now, I have not seen him. He is the one who would be doing the surgery on Alex's cleft palette to repair it, as well as fixing the "tongue-tied" spot.
Alex is handling his feedings quite well so far (knock wood) and is up to 60 cc's (mL) over 1.5 hours. As I said in yesterday's journal entry, 75 cc's is the goal, and at each feeding, his feeding volume goes up 2 cc's. We just hope that this next surgery that will be coming up on his back will not set him back, at least not too much.
The occupational therapist also stopped by today & worked with Alex. She held him upright & wants us, each time we hold Alex, to keep him midline, so that he is more straight. She tested his flexibility & was quite pleased with it. She was also very happy to see that he does normal baby things like bringing his hands together in front of him, and when he moves, his movements are very smooth & not jerky at all. He has good control. He also moves his head voluntarily. In these aspects, he's just like any other normal baby! Boy, do we love to hear that!!!
Alex & I have been reading Alice's Adventures in Wonderland today, and we are now waiting for Daddy to arrive at 5pm from work! Alex (and Mommy) can't wait!! :)
Alex's central line, which was in his shoulder directly into a vein, and gave him his antibiotics, was leaking last night, so they had to take it out. He now has an IV in his head in order to get these meds. It looks gruesome, but they say it's actually one of the best places, as it doesn't tie down any of his extremeties.

Sunday, September 30, 2001 at 02:45 PM (CDT)

Alex has had a pretty quiet weekend thus far. He had his MRI done on his spine Fri. afternoon, which he handled like the little champ that he is!! We are still waiting for the results from that & are hoping that Monday will bring those. Mommy & Daddy gave Alex a bath & shampoo on Fri. night & we handled that like the champs that we are! :) Friday he was retaining a lot of fluid due to him being given the wrong dosage of fluids, but he was given Lasix, which is a diuretic, and that helped him get rid of the extra fluid. He looked like quite the chunky monkey though, until he pee'd it out! Saturday Alex had some very wakeful moments & he was very calm! His breathing is getting better each day it seems--slower & more relaxed. His feedings have been "upped", which means that the volume he is fed is increased. He's still being fed through a tube in his nose that goes straight to his tummy, though we do work with breastfeeding, as well as the occasional feeding w/a bottle & Haberman nipple, which is a nipple specially designed for babies w/a cleft palette. His feeding dosage has been upped to 44 cc's (mL) over an hour & 1/2, then an hour & 1/2 off. Each feeding, his volume is being upped 2 cc's, with a goal of getting 75 cc's. We hope his little tummy handles this, as that makes him one step closer to going home to his REAL home on Shady Oak Road!! :) OUR goal is to have our little peanut home for Halloween. We pray that this will happen!! We think our little fighter is quite capable of this!! :) The doctors have said that this is not an unrealistic goal, though, as always, there's no guarantee.

Friday, September 28, 2001 at 11:50 AM (CDT)

Alex was awake the whole night, and has had a very busy morning so far. They switched him last night to something called a Rollo Bed, which is a type of air mattress. Alex favors lying on his right side, due to his surgical site as well as the curvature of his spine. Therefore, they've switched him to this special bed to help his weight be distributed more evenly & to help prevent sores from forming.
Alex has an MRI today at 1:30 on his spine to look for the myomenigocele. Because of this, he has not been able to eat anything since 7:30 in the morning, so he is very restless & cranky.
Many doctors have been by to see Alex today. The hand/arm surgeon came by. She wants to see him at 3 mos. of age to evaluate him. His right hand will be operated on at around 6 mos. of age most likely, to separate his fingers. This, as mentioned in the journal entry yesterday, will be done in two stages. His left arm at the elbow will be worked on with mainly stretching. She (the dr.) hopes that this will increase his mobility. If not, a type of splint may be required. His left arm at the armpit, where there is still some webbing of the skin is a different story. She thinks that it may have been separated as much as it can be due to the fact that there are arteries & so many nerves under there, so he may just have to deal w/limited mobility there. He will be evaluated on this at 3 mos. age.
The neurologist came in & checked his reflexes, and what else, I'm not quite sure. Everyone showed up all at once & it was very chaotic.
The spine specialist/surgeon came in this morning as well. He wants to see Alex at 6 weeks of age. He believes that Alex will need a cast (at least) for his back, quite possibly for many years. He may even need surgery as well. We will hopefully learn more at his 6 week evaluation.
I am hoping to ride in the ambulance w/Alex to his MRI.
Stay tuned for more updates.

Thursday, September 27, 2001 at 09:48 AM (CDT)

Alex is doing well with his new casts. Those will be changed probably next Wed., 10/3. We had his care conference yesterday afternoon. Only one of his (so far) 3 orthopaedic surgeons ended up making it. We found out that the curvature in Alex's spine cannot be corrected. The only thing that can be done is prevent further curvature. They hope that Alex will "grow into" his curve that he has right now. We pray that that is the case. Alex will have an MRI done on his spine on Friday (tomorrow) to check for the meningomyocele (a form of spina bifida) that they thought they had seen on an ultrasound (mentioned in a previous journal entry). The leg/foot doctor is hopeful that Alex will be able to run/walk/play normally once the legs/feet are straightened out, but cannot guarantee it. He said that Alex is a very rare case & that he has never seen someone like it. We know how strong our little man is, and we are confident that by the time he's 10, he'll be running circles around us!!! Alex is having a hearing test done right now. The hand surgeon will be meeting with us tomorrow. The castings on Alex's feet/legs will go on for 3 months. If the progress has plateau'd at that point and they are not fully corrected, surgery will need to be done at that point. If they are still progressing, then the casts will proceed.
OK, his hearing test showed that the hearing in his right ear is normal, but the hearing in his left isn't quite. They are going to re-test him in probably one month. It may just be fluid in his ear.
Alex's primary nurse discovered this morning that Alex is what they call "tongue-tied". What this means is, the little flap of skin that we all have underneath our tongues is, instead of being attached only to half-way up his tongue, is attached all the way to the tip of his tongue. This can be corrected with a very simple surgical procedure that is generally done at bedside. However, since Alex will need his cleft palette corrected, they may do both things at once.
The Occupational Therapist stopped by Alex's bed this morning to show me (Amy) some stretching exercises that we can do with Alex's left arm to increase mobility. She also discussed his palette with me, and let me know of an insert that can go into Alex's mouth at feeding times until he has his palette corrected. It resembles a retainer and would be made with a mould that would be taken of his mouth. This would enable him to have normal suction for feeding until his cleft palette, as I said, is corrected.
We also found out at the care conference that when they separate the three fingers on his right hand that are fused together, they would only separate one at a time. If they separated all at once, the middle finger would basically die, as everything in the hand is separated left side/right side, and all of the blood would be going to both sides and the middle finger would be drained and die.

Wednesday, September 26, 2001 at 01:54 PM (CDT)

Alex had his casts on his legs changed last night. His feet and legs are doing well! And Alex was such a little champ while they wrestled with his legs! He didn't squawk a bit. Today we have the care conference with 2 of his (so far) 3 orthopaedic surgeons. His chromosomal reports also came back & they were normal.

Tuesday, September 25, 2001 at 10:29 AM (CDT)

Alex had a fairly restful night, though he was fidgety. His antibiotic to fight his enterococcus (sp??) infection has been switched again, from ampicillin to vancomyacin. His spine specialist orthopaedic surgeon has been contacted. The recommendations as of right now for his spine (he has quite a "c" curvature of the spine--see previous journal entries) is to observe it for now, no intervention is "needed". In 6 weeks there will be a follow-up w/the spine specialist. If curvature is improving, they will continue to observe him. If curvature is worsening, intervention will begin at that time, which may include bracing or surgery, but would be decided at that time. If there is the presence of meningocele (a form of spina bifida which they think they may have seen on the ultrasound of Alex's spine--they have to do an MRI to confirm) will not affect the management of Alex's scoliosis.
Alex's leg casts did not get changed last night. We're hoping the doctor will come today to do this so that we can progress with straightening Alex's legs & club feet and correct his dislocated hip.
Alex's chromosomal/genetics results are supposedly going to be reported to us today.
Other than this, Alex & Mommy napped again today together in the recliner and he has been sleeping peacefully in his crib after Mommy put him back in order to pump. We will be attempting breastfeeding again when Alex wakes up. We were going to attempt this on Monday, but Alex slept the entire day. Poor tired little peanut!! :)
Alex's Grandma Molina is going to stop by for a visit around lunch time today.

Monday, September 24, 2001 at 01:25 PM (CDT)

Alex has been resting most of the day. He & Mommy took a really nice nap together in the recliner chair this morning. The doctors have switched his feeding schedule to a continuous drip feed. His feedings had been going up in volume, and it seemed to be making him really uncomfortable, causing him to cry constantly for an hour or more. We believe this is caused by gas. With the continuous drip, it seems to be easier on his tummy for the time being. His infection is getting better, and he has no fever today. Daddy is back at work today, so it's just Mommy & Alex hanging out for the day. I've been reading him many stories & talking to him, telling him how very much he's loved.
His casts will be getting changed this evening around 6 or 7 o'clock. Alex's med student has requested that the orthopaedic surgeon w/the spine as his specialty contact us either by phone or by stopping by so that we can discuss his long term plan for Alex's spine problems. On Wed. Mommy & Daddy will be meeting with the other 2 orthopaedic surgeons, with legs/feet and hands/arms as their specialties for a "care conference" to discuss their long-term plans for Alex. Alex's Grandpa, Dr. Molina, will be joining us as well, for moral support, and Alex's primary nurse, Darla, will also be there. Hopefully we'll be able to get an idea of what Alex's future will look like, surgery/recovery wise, and how long this might take. We've been told it could be 2-3 years. Our precious little strong man will make it!! :)

Sunday, September 23, 2001 at 02:21 PM (CDT)

Alex is doing MUCH better today! His fever is gone, and his temp is at 97.4 degrees. Mommy & Daddy are SOOOOOO relieved!! He's been sleeping peacefully the whole day. That's exactly what he needs, as he needs to get his strength back after such an icky day on Saturday. Daddy has been reading stories to him all day long, which he loves, even though he may not be able to tell us that! Tomorrow Jorge goes back to work. It will be hard for me (Amy) not to have him to talk to & to calm my nerves. We'll make it through this though! Grandma & Grandpa Molina stopped by at lunch time & brought Mommy & Daddy some McDonald's. It's really the first food we've had in two weeks that hasn't been hospital food, save for a couple of trips across the street to Davanni's. It was a welcome change!

Saturday, September 22, 2001 at 06:43 PM (CDT)

Alex has been battling a fever since in the middle of the night. He was at 102.3 in the middle of the night & then went down to around 100 for a bit. But then at 1:30 this afternoon his temp jumped to 103.3. It is now back down to 101.4 and they've given him another dose of Tylenol. They are also giving him antibiotics. It has been a rough day for everyone, especially little Alex. It's very very hard for Mommy & Daddy to see their little boy in pain, and not even be able to pick him up to comfort him. It's excruciating to not be able to help your child feel better. There's really no other feeling like it. I just wish that we could at least pick him up. We just tell our precious little boy that Mommy & Daddy are there, and that he has to continue to be strong & fight off all of the oogies that are trying to get him. We've been reading books to him all day and stroking his head. We love him so much & want to see him better again. We pray that the infection will pass quickly. He's our strong little man & he will fight the oogies and win.

Saturday, September 22, 2001 at 11:19 AM (CDT)

Overnight our little Alex developed a fever of 102.2. They've drawn blood to check for infection, which they think may have developed in one of his lines, which is a line for meds, nutrients, etc. that goes straight into a main vein. They've started him on some antibiotics, and his temp at this time is at 100.8, so it is going down. They've given him some rectal tylenol as well, but he is still restless and may need a little bit of morphine to help him sleep. Sleep is very important right now. It scares Mommy & Daddy, but he's our little strong man, and he will get through this. They have also stopped his feedings of breast milk for the time being, as he vomited a bit in the middle of the night. He will be fed nutrients through an iv. Because of his fever, they will also probably postpone his cast changes until tomorrow, when he will hopefully be feeling much better.

Friday, September 21, 2001 at 01:44 PM (CDT)

Alex slept on his tummy today a bit for the first time. He hadn't been able to do that due to his tummy surgery. He seemed quite comfortable! He snoozed for a good few hours. Over night (Thurs. into Fri.) Alex's primary nurse gave him some breast milk in his mouth for the first time!! :) The doctor's have been attempting feedings through a tube that goes straight into his tummy. Earlier in the week he wasn't tolerating them and would get green bile in his tummy, so they had to temporarily stop the milk feedings and only feed nutrients through an IV. This is normal for infants in the NICU (neonatal intensive care unit). But yesterday he had been getting feedings through his tube & was tolerating them quite well. He seemed really hungry in the afternoon, trying to stick anything into his mouth that was within his reach and making the "mouthing" movements a hungry infant makes. So last night his primary nurse ever so slowly dripped 3cc's of breast milk into his mouth & he loved it! That was the first time he had actually tasted mother's milk. Today we will try nuzzling him to Amy's breast. The problem he might have eventually (he is not ready for full feedings yet) is that he has the cleft palette, but we're hoping he'll be able to work around that. He's a VERY smart little boy, so we think he'll do just fine, once the time comes!
His casts on his legs will not be changed until tomorrow (Sat.) as the orthopaedic surgeon that needs to do the cast changes is in surgery all day today.
Jorge has to go back to work on Monday, so we are not looking forward to that. I'll (Amy) have Jorge drop me off at the hospital before he goes to work and then pick me up afterward. He will try & make it to the hospital for his lunches. It will be hard for Jorge to go back to "work as usual" with his little precious boy being in the hospital. We still do not have any idea how long Alex will be in hospital, but have been told it could be months. We pray that that will not be the case & we've told Alex his goal is to be home in time for Halloween at his REAL home! We've put pictures of our house last Halloween up in his crib to "remind" him of his goal! :)
Thank you to everyone for all of the prayers and love for our precious little Alex! We cherish all of the support we have around us! Thank you!

Thursday, September 20, 2001 at 04:20 PM (CDT)

Alex has had a busy day today. He had an ultrasound done on his spine and kidneys this morning. His spine has some more complications. The med student that is in charge of Alex came and told us that Alex's spinal cord goes down further than normal and it is also attached. He also has a kind of cyst on his spinal cord. The med student couldn't really tell us any more than that or explain what exactly his cord is attached to, or what it all means. We have to wait to talk to the neurosurgeon. We were hoping he would stop by today, but as of 4:30 he has not. Daddy & Mommy got to give Alex his first bath today! It was a sponge bath & we also washed his hair. He loved having his hair washed but hated having his body washed! :) It was nerve-wracking for us, as we're so afraid we're going to hurt him, but we did fine in the end. Rumour has it, too, that he will be having his first cast changes done today, but again, as of 4:30pm we've not seen the doctor. We would like to note to everyone that we know that some of the things we've described as being wrong with Alex can perhaps conjure up some strange & perhaps not so pleasant images. Truth be told, he truly is an incredibly beautiful baby! Alex has a very long road ahead of him, but he's a fighter and he will come out a winner!!!

Wednesday, September 19, 2001 at 08:44 PM (CDT)

Ok, we've been a bit lack in keeping things up to date (we're a bit busy, you know) so we'll try to catch up a bit now.
MONDAY 9/17: Grandma & Grandpa B. came up to visit little Alex for the first time. They thought he was precious, of course! Alex did not have the nerve tests done. Overnight they had taken out his suction tube from his tummy. It was decided however that he still needed that in, so they put that back in the evening. Alex was quite congested on Monday, but still slept quite a deal. Mommy & Daddy both got to hold Alex, as did Grandma B. Alex also had an eye exam, and everything was normal so far.
TUES. 9/18: Alex had a bad day. He was poked & prodded all day long, and we found out later that he received NO pain medication the entire day, which did not make us happy. We now know to always ask for everything! And if we think our little one is in pain--TELL THE NURSE! Found out that Alex's right hip bone isn't quite formed correctly from a previous ultrasound. The doctors are hoping that this will be corrected with the multiple castings Alex is having done on his legs/feet, but if not, it will need surgery some time in the future. Had another EEG done. Xray to his chest shows lungs are better & his intestines are fine--NO KINKS! in his intestines. This is GREAT news, as if he DID have kinks in his intestines, they would have to take him back in to surgery. But he's pooping plenty & moving things through. Never thought we'd be so happy to see poopy diapers!! A radiologist attempted to do an ultrasound on Alex's spine & kidneys. This could not be done, as they needed Alex on his belly & he can't be on his belly yet, due to his surgery. Grandma & Grandpa Molina finally came to visit today, after being stuck in Mexico. This was Grandma & Grandpa Beavers last day with Alex until the next visit.
WED. 9/19: Alex had a MUCH better day!! :) He's our strong little man! His EEG results were better, though they say there is still a questionable area, so they are keeping him on phenobarbital, an anti-seizure drug. The EMG (the nerve tests) was cancelled/postponed until next week some time so that Alex can become more stable. His breathing is still fast & shallow, but the doctors think that this is probably due to the fact that, while in the womb, since Alex's intestines & liver were on the outside, his lungs had a ton of room. After the surgery put everything back inside, his little lungs got rather squished, so they just have to get used to sharing space with all of his other organs! We hope his breathing will normalize soon. His lungs are looking even better on Wed. than on Tues. & Alex has no sounds of congestion. YIPPEE! Surgery resident stopped by to see how Alex was pooping (great!). He said that Alex's tummy felt nice & soft, which is fantastic.
HERE'S A RECAP OF WHAT WE "KNOW" SO FAR:
**EEG looked better--before it was abnormal
**the operation for his bowels/liver--they placed it all back in---this is possibly causing his shortness of breath due to his lungs not used to being in such a tight space, but that will correct itself. He still can't "eat" the breastmilk (it's fed through a tube right now), which is completely normal & they keep trying every 3rd or so day, but he's pee'ing & pooping well
**on medicine to prevent seizures
**his back has a "C" curvature, perhaps scoliosis, but they will wait to do anything about this & will review it every 4 weeks to see if it corrects itself
**his left arm, which at birth had been fused to the side of his chest, was also separated at the time of his abdomen surgery
**feet have begun the castings to place them in their correct positions. These castings will be changed weekly. Alex's left foot is a typical club foot, and his right foot is turned completely backwards and up.
**Alex has a cleft palette but they will not do surgery on this until later, probably around one year. He also had a cleft lip, but that corrected itself while Alex was still in utero.
**Alex's right hand has the 3 middle fingers fused together, so that his hand looks a bit like a little mitten. They will do surgery to repair this, but separating the fingers, but again, not until later. It's really not a high priority in the scheme of things. All of the bones appear to be there, it will just be matter of separating them, hopefully.
**there is a debate on whether or not Alex has a tethered spinal cord--they will do further testing
**Alex has 6 finger-like skin tags in assorted places on his body--may need surgery to remove some of them, others may just be "tied off".
**So far, we have not gotten a clear answer as to what caused all of this to happen exactly. Doctors believe it has to do with something called "amnion banding", which would have happened in utero in the very early stages of his development, but they also believe/wonder if there might be something else there, i.e. a syndrom of some type. We may not know this information for years. The amniocentesis we had performed at the 22nd week of pregnancy showed that Alex's chromosomes were normal. They did another test right after birth on his chromosomes and we are currently still waiting for those results.

Sunday, September 16, 2001 at 04:33 PM (CDT)

Today Alex is one week old!!!! He has been sleeping soundly! He has been given more breast milk, too! We can hardly believe what a beautiful little boy we've been blessed with! Daddy and Mommy have been reading a lot of wonderful stories to Alex. Tomorrow, Grandma and Grandpa Beavers will be coming to visit Alex for the first time. He's very excited! Monday will also bring tests to test Alex's nerve transmition via electronic stimulus to see how quickly things transmit.

Saturday, September 15, 2001 at 08:51 PM (CDT)

Alex has had a busy few first days of life. Since we are just starting his website on 9/16, we will try to do a little catch-up.
Alex was scheduled to arrive on Monday Sept. 17, though his due date was not actually until Sept. 26. However, little Alex decided that he wanted to come into this world even earlier and made his debut at 5:27am on Sun. Sept. 9 via c-section at Fairview University Hospital in Minneapolis. He had a number of problems when he was born, some that we knew of in advance, some of which we did not. But even with all of his problems, he is truly the most beautiful thing we have ever seen. We'll now try to give you just a glimpse of Alex's first days of life:
MONDAY 9/10: WE GOT TO HOLD OUR LITTLE BOY FOR THE FIRST TIME!!! :) Alex went in for surgery this evening to repair what we had originally been told was a gastroschisis, but what we've now been told was an omphalocele. Alex's tummy had not closed correctly and all of his intestines and half of his liver were outside of his tummy. Everything was put back into place in one surgery, thankfully. Dr. Foker performed his surgery. We had Alex baptised by the chaplain before his surgery.
TUESDAY 9/11: Alex had an EEG done on his brain. Though Alex had originally been breathing on his own, after the surgery it was necessary to intubate him in order to help him breathe. He is on morphine to help with his pain.
WEDNESDAY 9/12: We got to hold our beautiful boy for the 2nd time!! Alex is still recovering from surgery. He sleeps a lot and is under heavy sedation, though we occasionally get a glimpse of his eyes.
FRIDAY 9/14: Alex had an MRI done on his head and spine. He also had the first castings put onto both of his legs. They will be changed every week, witht he doctor rotating his feet a millimeter each time. Dr. Walker is doing the castings. Alex also had his first 3 cc's of breast milk! Our big little man pooped twice for Mommy and Daddy! He's such a good little boy! We met with the neurologist, and according to the MRI, Alex's head is of normal size and his brain activity is also normal. Thank you God!! The spine specialist also came to look at Alex's spine. Alex also showed us his first firehose action (he pee'ed everywhere when nurse Gail was trying to change his diaper! hee hee!).
SATURDAY 9/16: ALEX WAS EXTUBATED!!! :)
This means that Alex is now breathing on his own again! He's such a strong little boy! This also means that Mommy and Daddy can finally hear our little boy's beautiful voice again. It's a little scratchy due to the tubes being down his throat, but what a joyous sound it is! Alex is also taken off of the morphine. This means we can see his beautiful little eyes again! We got to hold him, too!

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