RollersInVegas

Saturday was a BLURRR...it went by too fast! Let's start off with the results of the blood sugar tests on Friday. Well, my ped saw us, didn't have a accu-chek, and he wasn't sure if labcorp would do the test on a baby....so, his son has diabetes, so he told me to come back that afternoon and he'd have his son's monitor and check it then. So, we went back that afternoon....and he poked Isaac and got an error. He poked Isaac again...and got an error. He then called his son for better instructions....and I told him that twice was my limit. I'd go and get my own monitor and check his levels myself. So, we went out yesterday and got the monitor and today I checked his levels. We were told to have him fast for 4 hours (which is his feeding schedule anyway) and check his levels...then feed him, and then re-check the levels 15 minutes after the feed was complete. His numbers were: 123 before his feed and 183 after his feed. We checked it again before and after the next feed and got pretty close to the same numbers. Now...I have NO idea what these blood sugar levels mean...but, my first call in the morning is to report these numbers to Dr. Baron (GI doc) and ask for an explanation. (By the way...Joe did the poking and Isaac didn't cry once!) We'll have to start doing all of Isaac's lab work ourselves!
Now...from the pictures, you can tell that Eli is wheezing again. He doesn't have a fever or runny nose..he just has this cough and wheeze! So, he's plugged up to the nebulizer every 4 hours. Chris did his pre-algebra homework all afternoon. And Isaac slept the afternoon away. (I love it...but, he's starting to sleep alot.) I'll ask Dr. Mayman about that. I think that's about it. He's still the POOP machine, still wretching (he spit up twice today), and he will not smile when my face goes behind the camera. I know he doesn't look smiley today...but, trust me...he is..

I don't know where the time is going?? These kids act like I'm their MOM or something?!? They keep me HOPPING!
We talked with Dr. Baron (GI doc) yesterday. The results from the emptying study showed that Isaac's stomach is emptying normal (on the slow end of normal), but still normal. We are going to have his blood sugar tested later today. This will show us if his glucose levels get too high after feeds...as this could also be the cause of his wretching. Then, we could try a few differnt meds, or try a endoscopy to check inside of throat...could possibly be a hernia on top of the fundoplication.
WHO KNOWS!
He's handling the wretching like a champ though...he's all smiles after his episodes. he had a fever all day and night after his shots. He seems to be doing much better today. My only complaint is...really...how many times can one baby poop. Because, I bet my baby poops more than YOUR baby! It's time to buy stock in Huggies...I anticipate a sharp rise in their 3rd quarter earnings!
Eli is talking my head off as usual and Chris is LOVING school. And Joe has lost so much weight (I'm so jealous). and that leaves Katie...our dog...she barks too much as always, but Chris is glad to have her back.

Just another busy day! Chris and Eli went off to school like champs and Isaac and I were headed off to the pediatrician for his 4 month shots (he's 2 months behind). He weighed in at 15lbs 4 ozs (but, they don't have a digital scale and he had his diaper on)...and his length was 25in. He seems to be growing around and not length wise...we'll have to start him on pilates and stretch him out! He had three shots and was a champ. He cried for only a little time and was smiling soon after. We spent our afternoon and evening doing homework with the big boys and Isaac napped his day away. (That's why you don't have a picture to look at today). I hope he sleeps good tonight (if not...I have the motrin on stand by)!

Where in the WORLD did Monday go??? Well, today we were as busy as EVER! We had our stomach emptying study this morning. They mixed a little radioactive juice with Isaac's milk and put it in his g-tube. Then, they took a one minute image of his stomach every 15 minutes for an hour. I should be able to call Dr. Baron tomorrow to get the results. This test will see if his stomach is emptying fast enough. If it is not...there are meds to make it go through faster. (We're just trying to find the cause of his wretching). Then, we had an afternoon visit from our developmental specialist Nicole and a physical therapist, Nora. They were great and pleased with Isaac's progress. He's holding his head up better, tolerating tummy time a little longer...and this week..he started grabbing his toys and putting them in his mouth!!! YIPPIE!!! What a big boy! In the middle of all that, I got Sto off to school, picked up Eli from school, picked up Chris and friends from school, bathed Isaac, bathed Eli, told Sto to bathe himself, made tacos for dinner, cleaned the downstairs (including mopping the floor), did homework with Chris, read to Eli, feed Isaac every 4 hours, Eli fed himself lunch, took Chris to scouts, read Eli a Star Wars book, and updated this blog...Oh...I need a brownie! But...I ate the last one this afternoon...hhmmm. Gosh..I just need to lose 7 more pounds to fit into my old jeans...it's KILLING ME! Why oh why didn't I just buy jeans with elastic waists!!!?? Oh, well...I'll just upload your pictures and get myself to bed! Isaac gets his 4 month shots tomorrow! Wish us luck!

I can't believe that I haven't posted anything since Wednesday....YIKES! Well...if my kids would let me BREATHE then maybe I'd have more time to type! This was a pretty uneventful weekend. Joe watched the boys this morning so that I could go to church (the older boys had a little cough...so, we wanted them to stay in bed and rest). It was so nice to get out of the house ALONE and see everyone! When I came back home, Joe and the boys had cleaned the downstairs...what a sweetie! Isaac's still wretching pretty bad. But, other than that, he's holding his head up so good and actually letting me put him on his tummy a little more each day. He's taking a little (like one teaspoon) of rice cereal with the spoon. We work on it everyday. His incision has some granulation tissue in some spots...when we go to the pediatrician this week, i'll ask him about it...although, he'll just tell me to ask the card...so, Dr. Mayman, if you're reading this...just give me a call!!

It's been a CRAZY day...what else would you expect from us?? This weekend was good. Chris had a scout camp out and Joe and Eli camped out in the back yard. The boys are all getting over their colds and Joe has left us this week to work in Reno. Yesterday, Isaac had another upper Gi. It didn't show anything new...so, we don't know why he's still wretching so bad. Now, the wretches include spit up, which chokes him, and turns him a scary ghostly white color. (yesterday, he satted in the 60s for about an hour after one of his episodes). Today, we met with Mark and he was able to get Isaac to eat a little rice cereal out of a spoon! I was SO PROUD! We also saw Dr. Baron. We are scheduling an emptying study...an xray that takes pictures of Isaac's belly peridically to determine the rate at which his stomach empties. If the rate is too fast or too slow..that could be the cause of the wretching...and there are meds for it. If neither or those are the case...then, we'll try the Baclofen. I asked if he could "shake it"...I need this resolved before we head to Stanford. Did I tell you that we're still looking at the Nov. 7th surgery date! I need more time!!! Not much more to tell...I need to get all my boys in bed and give myself a breather....before we start up again tomorrow..

It's 6 weeks since Isaac's heart surgery!!! He's doing so good! How about that head control...I couldn't be prouder! So, now we can pick him up under his arms and throw him around...watch out Isaac!

The day was too busy for pictures, but here's how it went:
Isaac saw Dr. McKnight today (immunologist). He reviewed his last labs that were taken when we were in the hospital in Vegas. Everything was ok except for his CD8 t-cell count. That number was 110. Dr. McKnight said that normal was 500-700...but, with DiGeorge, a low count was to be expected. Now, Isaac was born without a Thymus, but he is making t-cells...just a low number. Dr. M expects Isaac to catch up in a few years. We go back to see him in 5 months (when Isaac is 10 months). At that visit, we will do a function test to see if he'll be ready to have the live vaccines (MMR) and to see how his body fights different things. We will also then check the tcell count. If the numbers are the same or lower then we'll have to go to CA to have bone marrow tests done. Dr. M didn't think that Isaac would fall in that category...and I HOPE and PRAY that he doesn't. He said it was great that Isaac hadn't been sick at all yet (like a cold)...but, that he still needs to be a BUBBLE BOY this year...if he gets a bad cold or RSV...he could be in the hospital for weeks. So...sorry everyone...the germ rules still stand...if your kiddos are sick, or you are...just call us...we won't be able to let you in the house. We still love you though!
Eli went to the dentist..and NO CAVITIES!
Chris understood his pre-algebra homework.
I had to make brownies with Eli...he likes to cook them..but, leaves the entire pan for me to eat...and I can't just let them sit there...that would be too wasteful...
We have no appointments scheduled for tomorrow...just errands to run for the other boys...health project and scout camp out for Friday to prepare for.

Isaac slept 7 hours straight last night!! I haven't slept that long in months! When he woke up at 4:30 crying...I was so well rested I could have started my day that early! But, you know that didn't happen...I started that feeding pump and jumped back in bed!!! We saw Dr. Mayman this morning. Isaac weighs 14lbs 3ozs and is 25 ins long. His breathing is a little more rapid. But, he was pretty and pink today with sats at 81. We're going to watch the lowering sats and just check back in with Dr. Mayman in three weeks or if his sats fall below 70. He put a call into Dr. Hanley to see if they would let us have the heart cath here in Vegas or if we needed to go up to Stanford. We had a tenative surgery date of Nov. 7th scheduled... but, really...they will not determine when they will do the surgery until they see the results of the cath. (The pulmonary arteries need to be a certain size). Nicole came this afternoon and Isaac did a good holding his bobblehead up! He even laid on his belly for about 5 minutes! It's so funny the things that you take for granted with the other kiddos...and just cheer and scream when something so silly like laying on his belly happens! He's been in a very good mood today (probably because he actually got sleep!). I will try again with his bottle later tonight. I'll report those findings on the next post. Enjoy his pictures!

I just figured out how to transfer videos from my cell phone to my computer and then onto this blog! Wow..how cool! I'll keep uploading them...they'll be "blasts from the past"...

So, this is a clip of our Stanford hospital stay. Isaac loves to get his mouth suctioned! (even when he doesn't need it...he likes it!)

I can't believe that it's been a week since my last post...YIKES! Let's see...what's happened this week:
**Eli has gotten the ENTIRE house sick (that, or it's allergies)...but, we're all coughing and sneezing. So, we're sanitizing, dusting, showering, cleaning, and keeping everyone (but me) away from Isaac. He's coughed and sneezed a few times...I'm hoping he doesn't get it as bad as the rest of us!
**Chris is now a TEENAGER!!! (I feel so oLD!) He had his party Saturday night and I think he had a blast!
**Isaac is still wretching. He's spit up a few more times. He's just choking and turning extremely blue when he has these episodes. He gets really sweaty and then he's so exhausted that he falls right to sleep for about 30 mintutes. We go back to see Dr. Baron (GI doc) next week..maybe this new drug will help out! We see Dr. Mayman (card) tomorrow and Nicole (developmental specialist) comes is the afternoon! Isaac has been off of his steroids for a week now and his happy personality has come back. Although, he has forgotten that he needs to sleep again. He's up every 30 mintues at night...(he's lucky that he's sooo cute!) I've been keeping an eye on his sats. When we left Stanford, they were in the high 80's and they've been in the mid 70's. I'll have to ask Dr. Mayman tomorrow when we need to put him back on the oxygen. He's holding his head up a lot better now. He just doesn't like tummy time AT ALL! I can get him to lay on his belly for about 1 minute before he starts crying. He will still not drink from his bottle. We try everyday....one day...I suppose it will just click and it will happen! He smiles all day long...but, when I put the camera in front of my face...he stops. So...I'll have to wait until Joe comes home to help out with the camera. (Joe, by the way, is in Phoenix today). He's still foaming at the mouth (not swallowing his saliva)...maybe he just needs a rabies shot! OH>>>OH>>>OH....I know what I haven't posted....That mickey button fell out again!!! I was laying Isaac in his crib downstairs and out it came and so did all the milk that was just pumped in! Thank goodness Joe was home...I yelled (because that's what I do in a panic) and "cool moe d" Joe came over and fixed Isaac right up! He cleaned off his belly, got a new botton, put it in his stomach, filled the balloon with water, and got it perfectly placed! (I don't know what I'd do without Joe...he's cool and calm when I need him to be). Oh, and the refridgerator broke this week (it's only 2 years old). Joe got on line and ordered new parts and when they came in, I put it together! (Who's the man now?!?) and yes, it works like a charm! Joe's car broke this week. and no...it's still not working. It's at the Cadillac dealership in parts...they can't find the problem. So, Joe's in a nice Buick rental car...what a nice, family car that he has to drive (ha ha ha)...
Mandy brought Katie (our dog) back this weekend. That means our house is officially a zoo again! Big boys fighting, Isaac crying, Katie barking, Me talking over the boys (ok..sometimes yelling over the boys) and Joe clicking away on his computer wishing he had stayed at work a little longer!
What a wonderful life we have!!!

***ISAAC SPIT UP!!!****
Now, this happened yesterday...all over Joe...but, it happened. I'm waiting to see it for myself. This is GREAT if it wasn't a fluke! That would mean that his fundo was unwrapping and this horrible wretching would subside soon. The wretching is caused when he has a burp or spit up that can't come up (because of the fundoplication--stomach wrap). This stomach wrap will eventually unwrap as the stomach stretches...and I hope our day is soon! But, for now...he's getting a little of both, and I think that's probably worse for him. He starts to wretch, then gets a little in his mouth, that FREAKS him out...so, he chokes for a while, turning a little blue, before remembering that he can actually swallow....(and I thought tutoring Chris in algebra was going to be hard...try teaching your little one to swallow again!) We shopped today...and it was GREAT to be back in the swing of things. I'm still trying to get the house organized...my never ending battle. Happy Labor Day to all!

Let's see...what can I tell you???
**About Issac's feeds....we've increased his feeds to 150cc's every 4 hours (instead of 140 every 3 hours...)that's a little less for the total day....but, because I am fortifying the milk....he's getting more than enough calories. We'll get the upper GI scheduled (hopefully by next week) and if there's nothing anatomically wrong, then we'll get to try the Baclofen (I didn't even have to ask for it Terri....) He's still wretching...at least 5 times a day!
**We're working with Isaac's bobblehead...he gets better each day! He's getting so strong...it might help if his head would stop growing..it's got to be touch picking up all that HEAD!
**Eli is feeling better...so, I'll be able to invite Terri and Matthew over soon!
**I loaded the dishwasher tonight and folded the laundry (But, I didn't put it away yet...that's what we have Christopher for!)
**We gave Isaac a toy that encourages him to kick his feet..and when he does, it starts spinning and singing...well, Isaac kept his feet close to him, he wouldn't extend them to kick at all. Then, when he started, the toy would sing and spin and sing...and then it scared him so he would stop kicking! It was too funny!