RollersInVegas

Well...It's Thursday and we MADE IT!!! We had a great night last night...even though my little guy wanted to eat at 11, 1, 3, 5...so, sleep was no where to be found! We had our appointment with Dr. McKnight (the immunologist) and he's ordered blood panels for when Isaac goes in for the heart cath. (what a sweetie...not making him be poked more than necessary--he'll be sedated for the heart cath, so he won't feel this blood draw!). He's going to review Isaac's t-cells and b-cells in July before his heart surgery to make sure he's healthy enough for surgery. He told us to expect a longer recovery time from surgery than a normal baby because of the DiGeorge and his body trying to heal from it. He said Isaac looks great to him. He's got about 25 other DiGeorge patients, so I feel better about the knowledge he has about this syndrome and his monitoring Isaac's progress. Overall, Isaac's had a great day...he's eating all of his bottles, and letting me take pictures! What more can you ask for?
I talked to the boys today...and talked...and talked...mom was at church, and they must have needed some attention. I can't wait to see the little stinkers!

Here are the pictures from our day. (There are 16). In order, they started off with a CRANKY BUG named Isaac! He was not a happy camper today! He didn't start eating good today until lunch ( I was getting a little worried). He turned a beautiful shade of blue-gray that almost gave me heart attack! But, we got through our rough morning and that lead to a long nap time! I turned the ringers off, talked to Joe (who, by the way is in Reno this week), and prepared to sleep with my baby. Until, 30 minutes into my nap, the pool guy rang the door bell...which then makes Katie start to bark...and so...once again...everything is against me napping. Isaac woke up from his nap and ate like a champ! You can see him sitting in his bouncy seat...just chilling! He was in such a good mood, that I started playing with his hair! (Just because he's a boy...I can still have my fun!). Well...he would only allow a little fun, before he let me know he had enough...and he'd prefer to swing and sleep. That's where we are now...Isaac is in his swing snoozing, Katie is sleeping on the floor, and I'm thinking about NOT eating another brownie before bedtime!

Mom took the boys to the beach today. Chris was a boogie boarding champ and I can't believe that Eli gave it a try (he's normally a chicken!). They had a BLAST! I'm sure they'll sleep the day away tomorrow!

Before we give an update on Master Isaac...we must all pause for a moment of silence....as today we remember and celebrate the birth of Mandy. It was 30 LONG years ago that she graced our mother with her presence and continues to remind us of that presence each and everyday! We love you Mandy...Happy Birthday!!! As a gift for you...may I present Eli...the robot dancing spiderman! (Chris was the executive director and camera man on this video--great job!)



Now..on to the Isaac show! We started off with an 8am appointment with the urologist. He reviewed Isaac's ultrasound scans and he said that he had a little fluid on his right kidney...but, overall....his kidneys were perfect! He doesn't need to follow up until the fall! YIPPIE! Then, Isaac and I went home for quick break and then on to the pediatricians office for his 2 month shots. Isaac weighed in at 9lbs 7ozs (now, he did have his diaper on and it wasn't a digital scale..but, he's gaining weight!). His head is within normal range as well as his height....although his weight is only in the 10th percentile...(what pressure I have to fatten him up!). Then came the shots...3 of them! Isaac turned a beautiful shade of red, then purple, then blue...then he just stopped screaming...WE MADE IT!!! I hope you enjoy these pics...I'll work on putting some juicy rolls on him!

OH MY GOSH!!! It's Isaac's birthday and I didn't get a cake. My little angel is 2 months old today. Oh well...on with the updates.
It's Monday night now...and Isaac refused to let me take a nap today. We will need to sit down tomorrow and start negotiations. We actually have an 8am appointment with the urologist. This appointment is because when he was born, he had hydronephrosis (full kidneys). When we were discharged, they were considered mild. This is just a follow up to that ultrasound. Many children with DiGeorge often have problems with their kidneys. Then, at 11am, we have an appointment with our peditrician. isaac will get his 2 month shots. Lucky for him, we don't have any appointments scheduled for Wednesday, so he'll have a day to rest. It's almost time for his next feeding...so, I have to "shake it" to get all of my supplies in order!

OK...it's Monday morning. Joe's still sleeping (he's dreaming that he's getting up with Isaac) and Isaac and I were playing this morning. Enjoy the video. (and I was covering my face, not his...so, don't panic!). Don't worry...I'll post again tonight to tell you how our day went.

Isaac was back to his sweet self today. He stayed with his 3-9-12 feeding schedule and was moody only once today. I gave him a bath today...and for the first time, he didn't scream his head off! Joe and i were both able to get a nap this afternoon. The picture is of Joe and Isaac's nap yesterday. When Isaac gets cranky, this is the one position that he LOVES...he just snuggles up to you and always falls asleep. (He loves it..but, it breaks our arm and back to lay with him like that for too long!). The turtle you see is what Joe made for Isaac while we were in the NICU. He sewed the pacifier to the end of the turtle so that we could prop it up and help hold the pacifier in his mouth (he doesn't have the muscle tone to keep it in himself). He has been sleeping for one 4-hour stretch each night lately...and that makes a world of difference! I'm resigned to the fact that I'll turn gray sooner than later and bags will never leave my eyes now...it's a good thing that i've already snagged Mr. Right!

SATURDAY...this was suppose to be my day of rest. Joe was helping some young men from church install a car stereo. I had all of Isaac's baby supplies upstairs...I had plans to change him, feed him, and nap with him every three hours. Well, Isaac had other plans today!!! My little angel decided he wanted to eat 1 ounce every HOUR today...and the longest nap that he took was only 30 minutes. I feel more tired than normal....simply due to the anticipation of rest today. The real news to share is that Eli crashed today while driving the 4 wheeler. I talked with him and he wasn't hurt bad...just shaken up! The picture of him in his spider man costume is a treat he got while at grandma's house. Before they went to NC, Joe took Chris to see Spiderman the movie...and Eli couldn't go (because he isn't 13)..so, I mailed him the costume...He loves it!!! I hope Isaac remembers that he needs sleep and that he is good to me tonight.

Well...I guess you can tell there are no pictures attached today. I just had no time to snap any! We were up every two hours last night...so today I was moving in SLOW motion! We did have an appointment with the oral surgeon. If you recall, we did have a consult with a plastic surgeon while in the NICU...however, this doctor neglected to tell us that his office did not take our insurance...so, I had to search for a doctor that did take our insurance. The one we saw today went to dental school at Harvard, and medical school at Columbia. He was extremely nice and soft spoken...and talked directly to Isaac...I think he's a keeper! Other than that...Isaac and I didn't do anything else today. Chris and Eli are still having a blast at grandma's house! Maybe Joe and I can get in a "pay per view" movie this evening or tomorrow...or more realistically...this month! I hope everyone has a great weekend!

Ahhhh..One more day until FRIDAY!!! Not that we have big plans (because it's the last day to sign loans)....but, it's always nice to look forward to the weekends! Isaac didn't have any doctors appointments today...it was my day. I had a follow up with my ob..like you all wanted to know. But, I checked out ok...and he said I'm clear to have another baby...YEAH RIGHT! Isaac had a great day. No major problems...it's hard to believe that he needs open heart surgery when you look at him...he looks totally normal! Although, like all our boys...there's nothing normal about our offspring!!! The word from NC is that all is well...the boys are riding that new 4 wheeler like true country boys!!! Eli wanted an Escalade for his birthday...but, I don't know if that's going to be fast enough for him now. That 4 wheeler goes up to 35 mphs! If someone knows where we can find him a "Pod Racer"...he'd think we were the best parents EVER! He's been waiting to see the Blue Man Group...so, when they get back, I'm sending Joe and the boys for Eli's birthday.....(he'll be 5 on June 13th...my baby is getting too big!). There's a picture of Katie (the dog) for Christopher. When I talk to him each day, he doesn't ask how his little brother is...he only asks about his dog.

This morning started off with a visit from Isaac's developmental specialist, Nicole, and his speech therapist, Mark. (We know Mark from church). Mark said that we're feeding Isaac perfectly!! This afternoon, Isaac had his upper GI. He had to lie flat on his back and drink the chalky liquid.. I told them that it would come out of his nose and he'd spit it up....and it did come out of his come out of his nose and he did indeed spit up. He cried for the five minutes that they had to take his pictures. It broke my heart...but, he made it home to get a bath, a bottle, and a long nap. I talked to Chris and Eli today...and they are still having a blast on their vacation!!! (I hope they want to come home!). I miss them terribly!!!

We have GREAT news to share. We had an appointment today with the cardiologist. Isaac weighed in at 9lbs!!! (That's a one pound increase in only 2 weeks!) While they were doing his echo, they measured his pulmonary arteries...and they have doubled in size since birth! (Even though you may not know what this means...just know it's GREAT news!). His heart cath was scheduled for June 28th. He's pretty pooped today...but, tomorrow we have a full day. The early intervention team comes in tomorrow morning and he has an upper GI scheduled for the afternoon. (I hope he sleeps good tonight!). Chris is having fun in NC...his best buddy Daniel is spending the night with him and I'm sure they will stayed glued to the video games for the next 48 hours! Eli said that he drove a tractor by himself today! (oh...it's those things that make me miss NC and the country life!). It appears that they do not miss their parents and are having a blast at grandma and grandpa's house! NEWS FLASH****I made dinner for Joe...don't be surprised if he ends up in the hospital from a heart attack!

It's Monday!!! I didn't call the pediatrician today...Isaac decided that he would behave and eat when he was suppose to! I did, however, spend the day making appointments for my angel. Here's what we're doing for the next few weeks:
5/22/07-11am-Dr. Mayman (cardio)
5/23/07-9:30--Home health people (in our house)
5/24/07-9:00--Dr. bohman--(kat's obgyn)
5/25/07-1:00--Dr. Swanson--(cleft palate doc)
5/29/07-8:00--Children's urology
5/29/07-11:00-Dr. Sirsey--2 month shots
5/31/07-10:30--Dr. McKnight (Immunolgist)
6/5/07--9:30---D. Rhee (GI doc)
6/22/07--9:00-Dr. Schroeder--ENT
and we are still waiting for a call to schedule his upper GI and his heart cath will be scheduled for the end of June! Thank goodness Chris and Eli are at mom's--they'd never see me if they were here! Let's hope we get some sleep tonight and we see Dr. Mayman tomorrow.

Joe and I have researched Isaac's heart condition for months (Joe's almost ready for medical school!)...but, many of you aren't familiar with DiGeorge Syndrome. Not to scare you...but, this is a pretty complex syndrome. We only know some of his problems...others will manifest as he grows. Here is the list of possible problems children can have with this syndrome. We only hope that Isaac is on the short list. Just click on the image and it will increase in size so that you can actually read what it says! FYI...Velo-Facial-Cardio Syndrome, DiGeorge, and Catch 22 are all the same syndrome...they just have different names as to when they were discovered by scientists. In the early 90's it was discovered that they were all from the deletion of part of chromosome 22, that is when they were all bundled under one name.

Do you want to know how our Sunday went?? I think the pictures speak for themselves! I had to give him a bath (with soap this time)! He just does not like taking a bath at all. We had another LONG night. He is just not eating like he should. Today was no different with the feeds. He's not finishing his bottles and he's spitting up more and (put your food down) it's coming out of his nose more frequently. I'm starting to keep a log of what he drinks and how often...if he doesn't perk up, I'll be the one pushing for the g-tube in his belly! I'm calling the pediatrician tomorrow to have him take a look at Issac and weigh him. We talked to the boys today...and they are having TOO much fun! Eli went to the park with Grandpa and Chris stayed home and uploaded videos to YouTube with Grandma (I can't believe she figured out how to do it!). At least those two are getting tons of sleep! I'll be sure to post tomorrow to let you know what the ped says!

Isaac made me work last night. He ate at 12am, 3am, and for some reason decided at 5 am he was hungry again! Now, it takes about 30 minutes to feed him. So, we'll start his feeds at 12 am, finish the feeding by 12:30. Then he has to be burped and coaxed to sleep. By about 1am I can lay him back down. Then, I have to rinse out his bottle and pump more milk for him. So, by 1:30, I am ready to go back to sleep. That leaves an hour and a half between feeds for sleep! This little guy must know how much I love him...because I am running on 4-5 hours of sleep a day and I normally need 10! He has been eating really well at night (odviously!), but during the days, he is having more problems with reflux. It's hard to tell by looking at him if he's gaining weight. I asked Joe to stand on the scale and then stand on it holding Isaac....and it looks like he still weighs in at 8lbs 2-3 ozs. It would be great that he isn't losing weight...but, we're trying to get him chunky before surgery. Our next drs appt. is on Tuesday with the cardiologist. They'll weigh him and I'll let you know! I just need to pour straight sugar in his bottle! We took Isaac on a walk tonight. It is so nice to get outside and walk (even if it is dark outside and only a 10 minute walk).

TGIF!!! It's Friday...and it was FABULOUS!!! Isaac is still a little crazy during the days...eating every other hour...and cat napping. Joe had a great day at work and came home ready for our gourmet dinner of Pizza Hut delivery! I gave Isaac a bath today. We were in the kitchen and I had him all wet and went to reach for the bath soap...and it was in the living room! Boy...I missed Chris and Eli...the two best helpers a mom could ask for!!! So..Isaac just got a rinse off (he can't stand a bath...and it wasn't worth taking him out and putting him back in)...I'll give a bath again tomorrow and use soap this time!!! Joe and I are catching up on our tv shows tonight...I think we still have Lost and Grey's Anatomy still on the dvr to watch...it's still date-night on Fridays!!!

OK...for all you early risers on the east coast...you know that I didn't have Thursdays post up when you logged on this morning...So..here it is. (I was just a little lazy last night!). Thursday went very smoothly. Isaac is on this "Cat Nap" schedule where he likes to eat every hour or two and nap in between. (At least he sleeps for three hours at a time at night!). I was able to get a few phone calls in yesterday. I finally got to talk to my SUPER friend Brooke (whom most of you know) and I hope she moves out west as soon as she can! I was also able to talk to Terri (a mom here in Vegas whose son has the same heart defect)...It is also fun talking to her and getting new information from her! I was even able to take Isaac for a walk around the block--once it was dark--so, the temperature had dropped to only 90!!! (Don't worry..he was in his stroller all covered up so not even the fresh air could blow on his face!). When Joe came home...I even made him dinner...although I didn't have all the ingredients for the dish I had hoped to make...he still put on a brave face and swallowed a plate full! (It will be pizza hut delivery Friday night for dinner!)

Happy Wednesday!!! Isaac is on this new schedule where he likes to eat every three hours at night (which is fine...i'll feed him every hour) and then when he wakes up for his 6am feeding....he likes to just stay awake until lunch! Now...it's great to see him more active...but, I am NOT that excited about rising with the sun and seeing Joe off to work each morning. I much prefer him kissing my sleeping cheek goodbye and I get out of bed for the 9am feeding. (wishful thinking). Isaac is not spitting up as much, so I am laying him on his back and belly and playing with him more. The video is him laying on a play mat. I don't think he could see the toys he was hitting...but, he laid there and kicked them for about 20 minutes! (with no reflux issues). I fed him a little applesauce for lunch today...he just LOVES it! I can't wait for our appointments next week to see how much weight he has gained! I miss Eli and Chris SO much...but, they seem to be having fun...(and they haven't burned mom's house down yet...so, I guess all is well!).

Isaac was up last night like clockwork--12, 3, 6....and finally fell asleep this morning at 11am! Isaac gets rice cereal in his bottle, to help with his weight gain and it helps with the reflux. This morning, I gave him applesauce (diluted with water) with a spoon (enjoy the video!). My fingers are crossed that this helps him sleep better and that he is not allergic to it! (the doctors would have my HEAD!).
Ok...it's Tuesday night now...and no allergic reactions to the applesauce!!! I'll give him more tomorrow. He's finally snoozing in his swing (my lifesaver!). My sweet Joe showered me with Taco Bell this evening...what a sweetie! (for all those who don't know--i'm the worst cook...and now that the boys are out of town...I don't know how often Joe can expect a meal on the table).

I hope everyone had a great Mother's Day!! Joe made us french toast and dad made the bacon...what a treat!!! The boys flew out to NC last night and we miss them terribly already. Isaac ate every three hours last night and today has decided that he'd like a bottle every TWO hours!!! But, whatever he wants...he gets! He's in his swing now...fighting sleep. No appointments this week...so, I hope I can just post cute pictures and report no problems!

It was a SUPER SATURDAY! Nothing new to report...we just had a normal day. Joe took Christopher to see Spiderman...and because Eli isn't old enough to see it...I took him to target to get a Spiderman action figure. We all got sleep last night and Isaac actually slept alot today...which means we'll probably have a long night! Mom, Dad, and the boys fly out tomorrow night. I will probably be in tears by the time I post tomorrow's events. I didn't get a chance to take any good pictures today...but, I promise that I'll do better tomorrow! Happy Mother's Day everyone!!!

Joe's home!!! He flew in from Reno today...and we couldn't be happier to see him! Isaac had a really good day. He only has trouble with about two feedings a day (and by trouble, I mean the reflux gets too bad and he can't swallow any of the milk). He's snoozing right now in the swing..I fiinally figured out how to recline it and he loves it! The picture I attached is one I snuck of Isaac finding his thumb...if only he could find it more often!! We got a call today from Nevada Early Intervention and Isaac has a case manager now...so, therapy should start soon. Chris and Eli have been glued to the tv too much today...Joe's taking them to the movies tomorrow (tv..just in another location!!!). Dr. Mayman's office called today with a SURGERY DATE!!! We're scheduled for August 16th, with pre-op starting at 7am on August 15th!!! Having a date is getting a little SCARY!!! Remember though, this date is tenative for now. He'll have his heart cath at the end of June, and based on those findings, they will decide if the surgery needs to be pushed up or back...or if that date is appropriate. I'll keep you all posted! That's all the news I have for a Friday...I hope you all have a great weekend!

Thursday was good to us! Isaac had a good night last night...I think I had 6 hours of sleep last night (once again...that's all together...not one single stretch!). He's still drinking 2-3 ounces of milk (with rice cereal) every 2-3 hours...I'm ready to start feeding him baby food...but, I'll wait! Dad finished painting the house today...and it looks GREAT! Sister Nelson stopped in for a visit...what a treat it was to see outsiders!!! Dad and Eli went for a stroll down the strip tonight...that was his treat for such hard work this week! The boys were once again able to play in the pool this afternoon...I can't wait to take Isaac. We got a call from the cardiologist office today. They are scheduling a heart cath for the end of June and they called Dr. Hanley's office (in Stanford) and are scheduling a tenative surgery date for sometime in August. They will not have an exact surgery date until they review the heart cath results. Oh...it seems so close now...but, i'm not freaking out just yet!!! Let's hope we have a great night!

It's been a good Wednesday. Eli had preschool this morning...it was his last day because he is leaving this weekend to go back to NC with Grandma and Grandpa for a few weeks. Isaac had no appointments today...we just had a laid back day. Grandpa is almost finished painting the house (he would be finished already if I could get outside more and help him more). The boys spent the afternoon playing in the pool...what a wonderful life they lead!!! Isaac's reflux seems to be getting better because I was able to get 5 hours of sleep last night. We gave him a bath today...then he spit up all over himself...but, for a brief moment, he was clean. I love a day when there's no drama going on to tell you about!!!