We are just a family of five...three boys, a mom, a dad, a hamster, and dog. Welcome to our crazy world. Our adventures will make you laugh, cry, and pee in your pants...

Thursday, October 09, 2008

Still CRAZY busy over here...but, I thought you might like a quick update!

Dr. Mayman called and said that the holter results looked great. His heart isn't beating at that high rate all day and night...it does vary (that's all that I was worried about). He did say that he has a sinus arrhythmia (whatever that means)...anyone...anyone...and that he had a couple of episodes where his heart beat early...but, that was just something that they would watch.

so...I can breathe........ahhhhhhh.

Ok...he's eating like a champ! Well, when he's awake. I still have him on the same schedule...and if he's sleeping, I just hook him up to the pump. So, moms...I need to know how to transition. Because, with my food mixture...it's about 150 calories each feeding. How much does he need in a day anyway? (I keep forgetting).

The big boys went to the dentist today and NO CAVITIES!!! Eli had the dental assistants rolling! He told them, in his loud voice, that he had a secret...mom didn't know that he still sucked his thumb! Well, mom does know...and mom could hear him in the waiting room....the whole office was just laughing. AND he also told them that he had to come see them because he was eating oreos and Chris looked in his mouth and told mom that he had cavities...and mom FREAKED out! (which I did...I couldn't believe that he would have a cavity)! They just LOVED Mr. Eli. And tonight while we were doing our homework...Eli was studying for his spelling test. He just couldn't get how to spell "together"...and I had to tell him how I remembered it when I was his age "to get her"...he just cracked up! Then, it was a game with the rest of his words. "Heart"...."he art".....and on and on. I think he'll ace the test! Chris, on the other hand, was studying Japanese...sorry, but I couldn't help there.

I'll post pics this weekend!

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Mandy said...

Okay.... are you going to the concert??? You have to go. Do like mom said and just take Chris. Tell him there will be lots of girls there. :) (They just may all be your age.)

The new tutus are cute. Make sure you save one for Moo Moo. And also, Seth wants to go to Circus Circus for his birthday so I'll let you know the dates for sure but we'll/I'll take the boys on the 26th!! I don't think we will be there until the 25th sometime. Sorry but I can't take too many days off.

Give Isaac a kiss for us.

Mami Adame said...

I'm so excited Isaac is eating good! It was so stressful to figure out how much not to pump feed when they start eating orally! What I did was figure out how many calories she got a day when taking just formula. Thats how i knew how much calories she needed. The thing is, that as long as you continue to pump feed he can only be so hungry. Once Angelina got to where she was being able to eat a full meal really good, I wanted to stop the tube feeds cold turkey so that she would actually feel hungry. I DONT RECOMMEND you do this. Definitely check with the docs first. What we ended up doing was stopping the night feeds completely first. That way she would be hungry first thing. Then we would always offer her oral feeds first then supplement her with GT feeds. Email me if you want, hyperelementation was a big issue at the VCFS conference. Although I do think you'll have to make sure you supplement a bit in the beginning because Isaac is on the skinny side. Angelina did lose weight when she went straight to oral feeds, but she had some chunk to spare. I can share some of mine if you'd like!

Grandma Judy said...

That Eli is a natural born clown!
Aren't you glad you have him around to keep you laughing?

Good luck with Isaac and the eating.

Tina:0) said...

Way to go, guys on the no cavities!! I always hated going to the dentist because I knew they were going to tell me I had a cavity!

Glad the holter came back okay. As for the eating front... I transitioned Vaeh by exchanging her oral intake for her tube feeding. They had given me a schedule at the hospital after her last surgery & had on there how many calories she needed. I just did the exchange. Her formula (Nutren,Jr.) was equivalent to 1 cal/1cc so I just looked at the food calories per serving & did the math. When she went to 'regular' food, I started guessing & so far she's doing good! I'd call his doc or nutritionist - whoever is managing the feeding & see how many calories he should be getting. Vaeh's was always different because she needed more than "normal" kids. Its funny - now she puts them to shame in the eating arena!

Sorry so wordy - sending hugs all around! Hope you all have a good weekend!

Samantha said...

Hi my friend...I know I have been a total slacker when it comes to signing...sorry :(

Anyway, with the eating/calories...I will tell you what I have found with Micah.
1) It is NOT easy to start the transition, so more calories are better...don't try to figure out how many he is taking by food and how many by tube, keep the tube feeds about the same calorie wise and just keep adding food until he is eating TONS!
2) Micah requires 1050 calories a day per his nutritionist and GI doctor. SO...he takes his 3 cans of Nutren Jr. with fiber for 750 calories and I just PRAY that he gets the rest by food...we will see how that works next month when she comes back.
3) I am not sure how you are doing the tube feeds, but we have pretty much STOPPED all awake feeds...Micah gets 3 ozs of formula through his tube in the morning to "kick start his appetite" and then he gets the other 2.5 cans when he is asleep for the night. BUT...he is eating A LOT more than Isaac right now.
4) Micah only required 875 calories to grow when we first got him tube feeding...now that he is bigger (24lbs and 32 or 33 inches) he needs more to grow.
5) Micah needs 36ozs of FLUID everyday to keep him hydrated...that has been the hardest part for me, he HATES to drink!!!

I would call your GI doctor and your nutritionist and have them give you ALL the information of what Isaac requires.

Wow, I just wrote you a novel...not even sure if it answered any of your questions. I hope you have a fantastic weekend and I will try to be better about signing more often!!!

Love ya,

The Portas said...

GREAT heart news, yaaayyy! What a stud.

I knew Samantha would be able to give you some advice on the feeding stuff. :) I'm sooo so happy that Isaac is starting to eat more by mouth. This is a HUGE stride!

Eli, what a funny guy, making all the ladies laugh. All the ladies will be swooning over, if they're not already.

Have a good, calm day, ok? Take care! xoxoxx

crabby old man said...

Glad to hear that Isaac seems to be doing better. It's strange that I have never seen him or Magoo in person, but I do love those two babies.
May God bless the ROLLERS

Melissa said...

You don't know me, but I follow Isaac's story through Krista and Amber. I can tell you that Sinus arrhythmia is not unusual, especially in kids. It is basically just a lightly irregular rhythm, but still a sinus rhythm. Often it is related to respirations. Nothing to worry about, many people have it if you put them on a monitor while they are sleeping.

hayngrl101 said...

You have the best Eli stories. :)

As far as transitioning goes, we worked closely with the dietitian and we tried a million different things. One thing we tried was having her drink the formula after she ate her food. We also worked on slowly shortening her night feeds (more cc's over less time) and also turning the pump off an hour or two before she woke up in the morning. The thought was to get that hunger drive jump started.

We did NOT count calories. We just tracked the amount of formula she got and then "eye-balled" her meals (basically counted bites to start with).

My only tip is don't get discouraged if it takes him a while to transition. For us, we seemed to take one step forward, two steps back. She began intense feeding therapy (2x wk) when she was two years old, which lasted almost 2 years. When she was four, all that was left was increasing the amount of her intake and decreasing the tube feeds. That last step took us two years, but we really went at her pace and didn't force the issue due to repeated illnesses and surgeries on her compromised esophagus...

I can't tell you how thrilled I am that he is progressing so much and so fast! That is just soo exciting!!! Yay for Isaac!!