A long day

Yesterday I dropped Hayden off at a member's house(whom I love and so does Hayden) at 8:15 am and headed to Loma Linda. Landon had his echo at 9. We had that done--he was good, just laying there for an hour! Then we saw the cardiologist at 1pm. He read the echo and said that his function looks perfect. I have to admit that it was really cool to see his heart anatomy and beating. Yes, it's an ultrasound, so you are kind of iffy on what you're seeing. I especially liked to see the different mixes of blood in the chambers. As I predicted, end of Feb. for the heart cath and then we'll discuss with the panel when we should go for the next surgery.
While we were up waiting for the echo, the Gi nurses talked to me and we decided to get Landon ready to be admitted on Friday. So we went through all of the paper work, blood work and screening. We will do it under general anesthesia because Landon is a kido that they don't mess around with. I'm glad that it will be a real anesthesiologies who is there. So they will possibly check us in tonight, or just let us come on Friday to start antibiotics. We will hopefully be back home on Saturday. I guess you can't use the tube for 24hrs after surgery and so you need to be there to help hydrate you.
Thanks everyone for your prayers! Love you guys

Friday's the day!

What's happening?

Well, here is another update of what's going on. Landon has an Echocardio gram tomorrow--wed. and then an appointment with the cardiologist. We will determine from there when we want to schedule the heart catheder(measures pressures by going in through the groin and then shooting dye into the heart). I'm guessing we'll do that in February. From there we will determine when we will have our third open heart surgery--connecting all of the blood draining from the head and neck to the pulminary artery T(he doesn't use the PA trunk any more). I'm guessing in March or April.
Landon had five shots today. Let's just say that he and I are miserable. I hate these days, but they're worth it in the long run. I couldn't figure out why he was barfing so much today and then I saw that he had a temp of 99.4. Poor thing.
We found out today that we will probably have the G tube(for feeding) placed on Friday. I don't know whether Serge will be able to get out of work and school. I'm gearing up to do it alone. Thank heavens Amy said she will take Hayden. I guess Landon may have to be in the hospital a little bit more than 24 hrs like I had anticipated. Since he has had so many complications they want to do it down in the OR with general anesthesia instead of IV sedation. I think it is wise too. So as soon as we get an ok from anesthesia we will schedule it. They said it looks like we'll take him in Thursday night and then have it done Friday and hopefully we'll be home on Saturday afternoon.

Landon can't have tummy time without Hayden to entertain him.

Good morning! Life doesn't get much better than this!

Dressed up for lunch with dad. Now he's 13lbs of pure cuteness!

Spreadin' the news

So I spoke with the GI doctor. He said the results of the PH probe showed that Landon did have reflux, but it is not severe enough to make the nissen (surgery so they can't throw up) necessary. It was still an option if we wanted it.
We thought and prayed about it and feel that the less we have to have done permanence, the better. We will have to have him in the hospital, hopefully, only for the surgery and then 24 hours for observation. I hate to put another tube in him, but I feel that it's the route we have to go.
I met this week with an OT specialist. She is going to come to our home once a week for OT (helping him eat) and then once for PT--helping him meet his milestones. She told me she wants me to stop breastfeeding for seven days. i just looked at her like she was crazy. Anywho, I'm not in the mood for a bashing session. I've made it for two days and don't think I'll last much longer.
Landon is really improving in so many areas. I think he is really starting to see more. He follows lights more consistently and some contrasting colored objects. I can't wait for the day when I know he sees my face.
Hayden is Hayden--into everything. He has only had two poop accidents this week. I'm amazed. Today he went to the bathroom and I had run out of M&M's, so we switched to skittles. After nap he woke up and announced that he needed skittles. I told him he would have to go to the bathroom. He did and ate his skittles quickly. Then he demanded more. I told him he'd have to go potty more. Let's just say that in a period of about three minutes he had taken himself to the bathroom at least five times and couldn't understand why I wouldn't give him more candy. Finally, in desperation, I set the timer for 15min.. We'll get there some day. Serge continues to be busy with school and work. Seven more weeks to go!

We'll keep you posted as to when, hopefully next week, we have the tube placed.

The best pankakes ever!

This is a little diddy that Serge found in the good old Logandale recipe book. It's wonderful.

Grandma's Pancakes
2 Cups Flour
1/2 Teaspoon Salt
1 Teaspoon Baking Powder
1/4 Cup Sugar(key ingredient)
1 1/2 Cup Milk(we use rice milk)
1/2 Cup Oil
3 Eggs Separated--whites only

Beat egg whites until stiff. Mix the rest of the ingredients and fold in egg whites. Make great waffles too! We have added some variants-1/4 cup berries or 1 mashed banana. They are great to freeze and then nuke later.

Mayer Look-alike Meter

MyHeritage: Celebrity Collage - Family websites

Fun day with Dad

We had a good day today. Well, for the most part. We spent a few hours with Serge at school. He is building a prototype for a Tijuana project. It is quite the thing. I say that because he is building a small hut made out of what looks like cement. However, it is actually made out of recycled paper, mixed with concrete in bricks. It will also have plates for windows at the end of cut pipes. It's really interesting, if you can't tell from my description. Hayden had a great time riding his bike aroung and walking all over the place. I, personally, had a great time nursing Landon in the hot car. All in all, it was good to get out of the house and see Serge in the daylight.

Update

the update is that there is no update--yet. We are still waiting to hear the results of the PH probe. It was safely removed yesterday--it is not realy harmful. We made it out fime, except landon't least favorite thing in the world is getting tape ripped off of his face. Poor thing. So when we find out, we'll let you know--unless I pretend it's not happening and then I try not to write anything.
We saw Neurology and Nephrologiest doctors on Wed. nerurology said that his muscle tone is improving, but landon is still weak in his neck and trunk. He has made progress, but we're functioning on about a 3 month old level. Nephrology(kidney doctor) said that his blood pressure is a little high. Did you know that blood pressure is related to kidneys? Well, aparently 111/45 is not high enough to increase his dose of Captopril, so I guess that's good. HHHHHMM, sigh. One day at a time.
Hayden is Hayden--into everything. He is such a little boy now. He always wants to answer the phone. He usually says Hi and then says, "can you call me back? O.K. talk to you later, Bye." I guess he hears me say that a lot.

PH probe and prayers

Thanks everyone for your commnets. It made me feel better, and that is an accomplishment. We had the ph probe placed today, which looks like another nose tube and we'll have it taken out tomorrow. The study requires me to do a whole bunch of doccumenting on paper. I am most excited to put Landon back on his reflux medication, as he has been barfing so much more, which stresses me out. So we will probably have the tube placed within the next month or so, depending on how bad the reflux is.
Hayden has continued to potty train, although, he just mostly wants to poop in the potty to get M&M's. He tells me this before he enters the bathroom. Then once I do put him on the toilet, he tells me to go get Landon so that he can witness the even too. So I play along, (whatever works), but Hayden's monologs totally crack me up. "Zandon, when you get big, you can go poop on this toilet." Yup, but hopefully not that exact one, as I hope to have flown this coop by then!
Tonight he said the dinner prayer. Prayers are always a fun experience. He has learned the joy of saying his own. "Please bless Zandon. He can go to sleep." Then he breaks in with a snoring sound. I think he felt he needed to help us visualize. "And please help Daddy to eat his own sandwich." I'm not really sure why he felt Serge would eat other's food. it is usually Hayden who is mooching off of everyone elses. Nevertheless, Serge and I were struggling not to laugh. I totally admit that I had to open my eyes to see is Serge was smirking as much as I was. He was.

Dang it!

Ok,
we went to see the GI doctor today. It seems that we have reached the time when we are going to put the hole in landon's tummy to feed him. We are going on Tues. to do another PH probe, which measures how bad his acid reflux is, and then schedule for possibly this month, most likely next. I feel like a failure in some respect, but I know that I've done my best. I knew it was coming to this soon, but I just don't feel prepared. It looks like they will also do a surgery at the same time so that he won't be able to throw up. I hope it's reversable because WHEN (i'm being positive) the hole comes out and he can eat everything on his own, I want him to be able to burp--you can't burp with the no throw up deal. Crazy how you come to appreciate something when you're not given the opportunity.

Hayden and M&M's

let's just say that Hayden had a major breakthrough. Well--we hope. Last night 1/2 way through he decided to go poop on his potty. That was a fun clean up that involved a shower. Then this morning he actually went! Yeah! we'll see how we keep it up, but we are so proud of him.
Tomorrow Serge starts school. I think the only good thing about this quarter is that we only have 18 months to go until graduation!

The New Year

OKay, okay!
it's a new year's resolution of mine to write more frequently on the blog. So here goes. . . We enjoyed spending thanksgiving in Logandale at my mom's house. It was Landon's first big trip and he hated every second in his car seat. Hayden loved it at Grandma Hauver's house. Let's just say there was plenty to keep him busy--including a whole cupboard full of pots and pans. My favorite footage of it is of him playing with them all strewn out all over the kitchen and pretending like he was flipping burgers with a fly swatter. I guess he couldn't reach the spatulas. Second highlight of the trip was the shopping the day after. Let's just say that Serge went out all on his own and got some amazing deals the I loved.
Sooner than we expected Serge finished finals. He just amazes me. How he pulls almost a 4.o is beyond me.
For Christmas and the new year we spent it at home. My mom came on Christmas eve, which was so fun. I know it probably wasn't much of a vacation for her as I was always asking her to hold Landon or see what Hayden was into, but I loved it.
Hayden was so much fun this year. I must tell you that during present opening he did get sent to time out two times and ended up in tears more than that. He thought every present should be opened by him. I guess I didn't explain the tag thing enough. He got a little computer a trike and games. If you ask him what Santa brought him, he'll tell you he brought two candy canes--wich is true. On Christmas Eve, Santa himself stopped by and brought him a candy cane. It was great!--the other candy cane came from Santa at our Ward Christmas Party.
landon gave us a Christmas present on the 23rd of Dec. He laughed! it was soft and kind of sounded like one of the seven dwarfs, but it was priceless. What was the thing that got him laughing you ask? It was daddy asking him if he was poopy--I guess it runs in the family, as that was the phrase that always made Hayden smile.
As for me, I'm just me, trying to get through the day. I must comment on my favorite commercial,--has anyone seen the advertisement for Ikea lately? "Start the car!. . . WOOOH" Yeah, I can totally relate.
One funny story about Hayden. I took him shopping after Christmas at Kohl's. They were taking their displays down and putting up new ones. I had both kids securely strapped into the double stroller. There was a guy in the isle working and I tried to manouver around him. Just as I get next to him, Hayden leans down and takes a swipe at him, not once, but twice. The guy looks up and just starts laughing--thanks for the encouragement buddy! I am apologizing profusely and trying to disciplin at the same time. let's just say that Hayden and no nap equals a very dare devilish child who doesn't listen to mommy or his conscience!. I needed to find a cheap Christmas tablecloth for next year. so I head down that isle to look. As I am lookin g hayden is unloading the nearest shelf. So I tell him we're going home. Next I try to torpedo down an isle, hoping there wouldn't be anyone in the isle--what luck, no one was in the towel isle. So I head down it. Half way down Hayden reaches out and swipes a towel off of the shelf and then as I skid to a stop, a washcloth. I start in with, "Hayden! you can't take things off the shelfs." to which he responds in a serious and argumentative voice, "It was on sale!" I looked up at the spot where he got them and sure enough, he was right. HMMM. I guess I trained him well?