RollersInVegas

It was yet another LONG day...but, Happy Halloween it was! I started the day off at Eli's school (Joe was home with Isaac)...helping to volunteer for their halloween party. And yes..I forgot the camera. Then, I came home and got Isaac and took him to the endocrinologist ( who was FABULOUS!). He gave me a snazzy new glucose meter to monitor his levels. He told me to only record his levels before meals. So, when we got home I tried it out..and he was below 100. Now, I am giving him only breastmilk now, no formula, and he's been wretching so much lately that I'm giving him a little less in volume (he's just spitting it up). So, I'm not sure if these modifications to his food is making the difference or if the other meter we had was too cheap to give a good reading. (maybe the later).
I took the big boys to church trunk or treating...and again forgot the camera. They had a blast! Then, we came home and we all walked around the block and went trick or treating. Yes...once again, I forgot the camera. Eli was the fire guy from Fantastic four, Chris was scream, and Isaac was just wearing an orange halloween outfit (no costume...he's been sweating too much lately). I tried to take pictures of the kids when we got home...but they wouldn't allow it. Maybe next year.
Now...we're all tired..and I have to clean this house before mommy dearest comes...she'll see how we really live!

Just a quick update to tell you how our morning has gone. We just saw Dr. Mayman and Isaac's right pulmonary artery is growing nicely...but, he can't get a good look at the left artery to measure it's size. He's sats were 75 (low...but, normal for Mr. Isaac). He weighed in at 16 lbs (the gi docs scale must be a little off) and Isaac measured 26 ins long...that means he grew 3 inches this past month!! I was just looking at some winter clothes that I bought him to take to Stanford...and was thinking that they looked small...now I know why! Good thing I haven't taken the tags off yet...I'll just add another shopping trip to my "To do" list this week! YIKES!! It's GROWING!

On Isaac's crazy wretching--he's still doing it...5-10 times a day. He did a great projectile vomit on Joe this morning...poor Isaac. I've stopped adding the formula to my breast milk (we do that to make it more calories for him)...and this has lowered his blood sugar from the 190s to the 150s. I'll just keep doing that until we see the endocrinologist tomorrow. And on Thursday, we see Dr. Baron (gi doc) again. I'm really bummed that none of these meds we've tried have helped in the wretching department. It just takes all the energy he has...and then he gets so tired after words and takes a little cat nap.

This picture is of Isaac's hamster that's attached to his pacifier. I love that he can put it in his mouth by himself now...it cracks me up! Joe has to make a few more for our Stanford stay! And the video...I love the way he kicks now...he makes me laugh all day!!

Happy Saturday!!! I made all the kids and JOE get out of bed this morning and get their pictures made! It was a success!!! Here are a few of the pics...but, these are the raw pictures before they were cropped and centered. I can't wait to hang them and send out xmas cards! Isaac was a champ and the big boys did great! I don't think I'll be ready to fly out Friday morning at 6am...I wish we could postpone the surgery..forEVER! I have cleaning to do...so..ta ta until tomorrow!

I didn't have time to write yesterday...but I have many things to tell you. Yesterday, we got to see Nicole, Mark, and Shirley. Mark was able to get Isaac to eat some carrots. We have to use a syringe and his Nuk brush...but, with much patience, we are able to get a teaspoon down each session! (baby steps..baby steps). Nicole got Isaac to giggle at her...so cute! Shirley (nutritionist) weighed our fat boy...and he weighed in at 16lbs 9 ozs and was 25 1/2 ins. long(with a diaper and clothes on). Shirley was going to put a call into an lpn at an endocrinologist office to ask about Isaac's high blood sugar levels. (I haven't heard back from her yet.)
So, today I called our pediatrician and left a message with the nurse and gave her Isaac's blood sugar levels. Needless to say, he called toinght and told me that with those levels that I should take him straight to the emergency room. Now...our GI doc and the surgeon who did the g-tube surgery know his sugar levels....I would hope that they would have told us days (weeks now) to go to the hospital. Terri gave me the name of a good local endoccrinologist and I'll call them on Monday and see if we can get in next week..but, I'm sure that's doubtful for a new patient. So, I guess we'll just hope that Stnaford will give us a consult with one while we're there. (Count down...we leave in 7 days!)
I need to say Happy Birthday to my little Magpie niece...she's the cutest red-headed one year-old EVER!

We started Isaac on the Baclofen last night. So far...he's still wretching. I'm not sure how long before we know if it's going to do the trick. All it seems to be doing now is putting him to sleep. (which...for now...is fine with me...I had time to load the dishwasher today...whoop whoop!!)
We did go see the wonderful Dr. Kogut today. She's the surgeon who did Isaac's fundoplication and g-tube surgery. She said that his site looks great and was glad to see that he's turned into quite the butterball! She's a little worried about all the problems we're having with the wretching also. She said if the Baclofen doesn't work, then maybe he's just choking on all of his thick saliva...and there are drugs he can take to dry it up. (but...one drug at a time). We'll find the magic cure and he'll be fine!
My new cookbook came in yesterday...Deceptively Delicious. So, I made the boys chicken nuggets (with broccoli hidden inside)....they were SO good. Tonight, we tried little pizzas on wheat pitas...well, the boys are done with me...and only tried one bite, and wanted their Kraft Mac n cheese. It's ok though...I baked sweet potatoes tonight...and i'm searching for a recipe to sneek them into tomorrow for them! My boys are the kind of boys that if you tell them to eat what's on their plate or they can go to bed starving...they'd both run up the stairs and starve. And it looks like Isaac is going to be the same...make me work for every bit of food I can get in his mouth!
Tomorrow our favorite helpers are coming over: Nicole (developmental specialist), Mark (speech therapist), and Shirley (nutritionist). We're having a little get together to get this babydoll to eat and so that everyone can give last minute instructions before we head to CA.
Enjoy Isaac's video tonight...the first pics are of him on Baclofen snoozing and the others are in the stroller before our walk around the block (which Eli makes me do everynight....like I NEED to exercise or something!).
MEGAN...check out the shorts and sleeveless shirt...it was a lovely 84 today and probably only 80 tonight when we were out walking! (No sweaters here yet!!)
And everyone give Terri grief for not coming over to meet us yet. I know that we live on the wrong side of the tracks...but, GOSH...just put on Mike's bullet proof vest and get in your car already!!! oh well...maybe we'll just meet when Isaac graduates from High School!
(I'm just picking on you Terri...I know you are 10 times busier than I am...!! And I have to keep my kids germ free so that you can come over...I'm working on it!)

Make an on-line slideshow at www.OneTrueMedia.com

Isaac's still wretching...5-8 times a day. I need to get a video clip of it so that you can see why it breaks my heart everytime it happens. I called and left a message with Dr. Baron's office today, so maybe we'll get a call back with something new to try. We checked Isaac's blood bugsr levels yesterday and here's what they were:
Before a feeding (4 hours since the last feeding)--133
15 minutes after the feeding --191
30 mintutes after the feeding --185
and that's with the low dose antibiotic and 1 teaspoon of cornstarch added to his milk.
I hope they can figure out what's going on with my little guy.
Dr. Kogut's office called today and want to see Isaac for a followup appoitment tomorrow. She's the surgeon that did his fundoplication and g-tube surgery...Wait until I tell her that he can spit up now and all these wretching problems. Maybe she'll have an idea! (and not to re-do the fundo surgery!)
Chris stayed home from school today because he's a germ pot! Eli went to school like a BIG BOY! Joe's in Reno until Friday...I wonder if I could rent a husband while he's out of town??!! Oh...just JOKING!!! These lovely breaks are what keeps us happily married...we're going on 50 years now!!! (that's what it feels like anyway!) I'll update tomorrow after we see the surgeon.

You must be tired of watching the "Yo Gabba Gabba" videos by now! I'm feeling much better...just a stray cough here and there. Isaac seems to have been spared my germs (it must have just been allergies). Nothing new to report with him. We're still taking the low dose of antibiotics to help empty his stomach faster to see if that will stop the wretching...but, so far, it's not helping. I'll give it two more days and then call Dr. Baron and see if we can try the other medicine he recommended. Mandy and her kiddos came this weekend...such a cutie pie! Meghan is the red-headed daughter that i'll never have! The pictures of Isaac are of him eating with his new Nuk brush. He's not doing very well with the spoon...choking and throwing it back up...so, the brush should help stimulate his weak little mouth muscles. He's working on some sweet potatoes. We're working with the brush now three times a day, in between his g-tube feeds. (I'm lucky if I have a chance to eat myself each day). Joe's leaving for Reno again tomorrow (we really should just buy a house up there...a nice vacation home on Lake Tahoe...I'll wake up now from my day dreams...but, it would be nice. To be there to nag him when he gets off work!!) Back to Isaac....he's starting to babble FINALLY! He was doing it before surgery...but, then stopped. He's just silent all the time. He smiles, but never tries to make any sounds. And this week...he decided to be a big boy and try to start talking! I must say...I'm TOTALLY smitten with Isaac.

It's Tuesday...and I'm a red-nosed sick mama! I'm using lysol, hand sanitizer, and clorox wipes every where I go! Joe's in Reno, so it's me and the three boys. Isaac had a pretty tough weekend but, today he did pretty good. Although, this morning his sats were in thw 60's...we called Dr. Mayman and he told me it was ok to bring out the o2 if we needed it! Mark came over this morning and worked with Isaac's eating. It seems that Isaac just isn't interested...so, we have the Nuk brush to help stimulate his tongue to help him then swallow. Whew...who would have thought that someone in our family wouldn't want to eat?? Please enjoy these little video clips...I just couldn't stop...this is how much he loves Yo Gabba Gabba...if you haven't watched it yet...you must! We all LOVE IT!

Sorry about the lack of updates...but, we've been VERY busy here! Isaac saw Dr. Baron (GI doc) on Wednesday. His wretching was improving...but over the last few days, he's started coughing and with every cough is a wretch...which means he's gagging and spitting up every 20 minutes. (poor baby). He's also got a low grade fever. Anyway, Dr. Baron wanted me to increase the cornstarch in his milk over the weekend, if that doesn't work, we're going to start him on a low dose of antibiotics....this will help speed his stomach processing (just to move it on along). We're going to try that for a week, if that doesn't work...then, we're going to try Baclofen (the muscle relaxer)...if that doesn't work...we're in trouble! We'll be at Stanford at that time and all of this wretching will make for one miserable recovery! I've checked for new teeth..because he's got all the signs of it...I just can't find any yet! I hope it's teeth! He's really sweaty and I've caught his sats dipping into the 60s a few times. Don't worry MOM...I'm keeping him indoors and he's not out of my site. If his crazy mood lasts through the weekend, I'll call Dr. Mayman.
Nicole, our developmental specialist, came on Thursday. She's very happy with Mr. Isaac's head control. He has a few shaky moments at times...but, he's working hard on it! He can roll from his side to his back...but, he will NOT move from his tummy...he'll just cry until we roll him over! Stinker! Eli and Chris had a few friends over last night...needless to say, their rooms are trashed! These pictures of Isaac are indicative of his latest attitude...I couldn't get a smile to save my life (until I put the camera down).
**I almost forgot to tell you...Isaac's favorite cartoon is "Yo Gabba Gabba"...he starts smiling and doesn't look away for the entire show! He kicks away in that bouncy seat! I LOVE IT! (Eli loves it too!)

Isaac was a bit of a grump today..he stayed awake ALL day long! Maybe that means he'll sleep all night!!! (wishful thinking) We have an appointment tomorrow with Dr. Baron (GI doc)...I am hoping for a prescription for something that could help with this wretching. He's still doing it 3-5 times a day and choking horribly and then usually ending up throwing up....it takes a lot out of him. I would love for this to stop before we head up to Stanford...which, by the way, we have dates!
Here's the timeline of events:
Nov. 2nd, report for clinic at 12:00pm (for echo, labs, check-up)
he'll have the weekend off (but, we have to stay in CA)
Nov. 5th--report for the heart cath at 8:30am
Nov. 7th--SURGERY...I don't have a time yet...I hope we're the first case!!!
It's coming WAY too fast...
You know me...all I can think about is all the shopping that I need to do...It's COLD up there! I can't wear my flip-flops you know! I'll snap some pictures for you tomorrow!

It was conference today...so, it was nice to finally be able to attend church together...even if it was all of us in pajamas on the couch! Isaac wretched only once today and that was after I fed him a little sweet potatoes. He loved them, but you know...it gets up his nose, he freaks out, and starts coughing, which then causes the wretch, which then makes it all come out on me! Oh well....at least he liked the sweet potatoes. He's snoozing at the moment, Eli is forcing me to play another board game with him, and Chris is hiding out in his room. The pictures are of Isaac's tummy time today! Eli was cheering him on. It was the cutest! He's such a good big brother! He asks me if I've washed my hands everytime I pick up Isaac...how sweet!

We just had a LAZY Saturday. The little boys and I always take an afternoon nap together in my room...it's SO SWEET! (Although..it never lasts long enough!). Nothing new to report. Isaac's doing good, big boys are always fighting lately (Eli says it's because Chris is a teenager now and the king of DORKS!). I love it! I'm wearing my snazzy new glasses today. I look quite intelligent in them (if I do say so). That's really all I've got...nothing dramatic happening here...which is GOOD!! The pictures are of Isaac's latest chew toy...his g-tube! I have to always disconnect it or tuck it into his clothes, or else it's in his mouth! (gross!)

Isaac is only wretching about 2 times a day!!! That's cause for celebration! He has also discovered his thumb....miracles do happen!!! So, now when the pacifier falls out of his mouth...he finds his thumbs and fingers...and I don't have to get up every 15 minutes each night. What a relief!!! The boys were out of school today...oh what fun! He's still working on his baby food a few times each day...only a few bites each time...but, at least a little is getting in! Did I tell you how much he weighed this week at Dr. Mayman's office?? Well, it was 15lbs 8 ozs!!! He's such a fatty! And I love every fat roll on him (my back doesn't right now..), but I love him enough to compensate for my back! It's bed time..so, I'll try to post again this weekend!

Our Wednesday was like any other day...until Mark came over! He got Isaac to eat a little bit of applesauce!!! Then, some went up Isaac's nose (because of the cleft palate)...and that makes him mad! But, he was doing SO good...we were so PROUD of him! He was still wretching yesterday (even with adding the cornstarch)..so, I decided to stop adding the formula (which gives him the extra calories)...and he hasn't wretched since. I've given him 6 feeds...and not ONE wretching episode! The mornings are usually his worse ones...and he woke up just fine this morning. So, I'll keep it up today..and if the formula was the key...then, I'll have to ask about another way to add calories to his diet! (Because, he needs to be a chunky monkey!). Other than that...there's nothing new to report. We're all great!

Happy Tuesday!!! (ok..Tuesday night...) We saw our favorite Doctor this morning...Dr. Mayman. Isaac was as good as ever and Dr. Mayman said the pulmonary arteries were growing great. He called Stanford while we were in his office to remind them to schedule our heart cath. We had a little tummy time this afternoon...and that's what pictures are from. He's still wretching...but, I'm still adding the cornstarch...hoping it will work wonders! I've got nothing else to report...Eli made it off to school today, Chris is doing great in school, and Joe is in town this week! What a perfect day! Mark comes to see us tomorrow afternoon...Maybe he can perform a miracle and get Isaac to eat with a spoon!

No pics today...sorry! Eli had to stay home from school...too much wheezing. I took him to the ped. He's just wheezing and coughing. The ped thinks it's just allergies, but gave me antibiotics just in case. Oh yeah...this is Isaac's blog...well, you need to know about all the boys...so, before I called the ped, I called the GI doc to give them our blood sugar numbers. They called back this afternoon and said that those numbers were high and consistent with stomach "dumping". This sometimes happens after stomach surgery. The stomach will "dump" it's comtents slow at times and then fast at times. (which they think is what's causing the wretching). So, they told me to just add a teaspoon of corn starch to each feed. Now, I'm already adding formula to my breastmilk, and now we'll throw a little corn starch in with the mix. (CRAZY!) The corn starch is suppose to help with the blood sugar levels..he told me just how at our last visit, but I forgot. When I talk to him again (and not the nurse), I'll let you know. So, I tried this on his last feed...and it worked...unitl I got ready to start his next feed...he wretched. Maybe it just takes a while for his body to adjust (i hope)...this method would be better than trying to add more drugs to his mix! All the boys are in bed..my big boys were fighting, so they had to go down early. Isaac is snoozing in his living room crib (yes...he has 2 cribs...and why shouldn't he)...he's the king of our castle at the moment!