the world seems to be moving faster...

than it did when I was a kid. I remember the Christmas season lasted forever. The cookies we baked, the decorating. We're just so much busier and so caught up in everything else that we don't do the things I so cherished as a kid. I want to have family game nights, and go on family outings and have traditions. I miss those things about my childhood.


plans for 2011:
- go back to weight watchers
- see the eye doctor
- see the dermatologist
- go on a family vacation
- begin a family game night
- get better about birthday cards/gifts

Wow. So I haven't written in ages. I have an OD, and I've had it for over 10 years. But I just can't bring myself to write in it anymore. Things happened, I was an insensitive (strange to think of me that way, I know - but stress will do that to you!) jerk. And OD just doesn't FEEL right anymore. So now I'm here blogging. When I have the time. Time is definitely not something I have a lot of.
Kenny and I had a beautiful wedding last month. Adjusting to married life has taken no time at all, considering we were like a married couple before. The hardest part is signing T******n on everything.
I've recently begun selling Scentsy. I'm excited about that for sure! And there are lots of changes in the bank going on that should be good too. But we will see soon enough.

Lord, I feel like a loser for not updating more. Life has been crazy. I always knew having a second kid would make things more hectic, but PKU complicates things so much more!

Then ofcourse, we had to sign Isaiah up for soccer. I think we are gluttons for punishment.

There's tons more, I promise I will get back soon with a real update.

Kenny and I have decided on a new date... but I'm not planning on sharing it (except to very few, and they know who they are) until I'm sure we aren't going to have to change it again. But we are looking at a date in April.

Sammy went to the pediatrician for shots today... He's pretty behind on shots. Today we got his 6 month shots.
He's 22.5 lbs. 30 inches long and has a 48 cm head circumference. He's growing right on the same curve since birth and is developing nicely.
The doctor was one that I don't particularly like. In the past he has been condescending towards me. The last two times I've seen him, he was rather nice. I think he realizes that I'm not some young parent without a clue. I'm actively handling both of my children's special needs. AND I know more about PKU than he ever will. He's going to try to see what he can do to help us with the insurance situation.

The work situation turned out ok... barely. I still have my job, but I'm kind of on the radar now. joy.

Our metabolic dietician is leaving Emory. =/ She was accepted into a nuclear medicine program in California. I've spoken to her (and no other dietician, save for the head dietician over her) once a week for the past year. She's sort of been my backbone through the first year. I'm not sure how I am going to handle this.

a date is set

Apparently a date is set.

September 26, 2009
at Mercy Stables, Ringgold, Ga.

feelings, wooah,wooah, feelings...

>
Sammy had surgery bright and early this morning to have tubes put in his ears. He was a little trooper and did great.

I know I wrote about recert last time (in a friends only diary entry @ OpenDiary). WIC is giving me just 6 more months of coverage, so we have at least that long to work some things out as far as the majority of the formula goes.

I talked to his dietician and she told me that they have patients that cannot afford the formula, so they just don't get it.

So those of us who cannot afford and get no assistance should just sit back and let our children develop brain damage? HELL NO! Not on my watch. One of the mom's heading up our GA PKU group asked me to be an advocate. I told her to sign me up, I 'll stand on a soapbox all day if that's what it takes to get this stuff paid for!

I don't think we are going to have a wedding. I hate that I am saying this and kenny has no idea yet, that i am saying this; I hate that it will be this way, but we just cannot afford to put a wedding together. I'm sure we'll just randomly go to the JOP.

Kenny's youngest sister graduates in a little over a week and we won't be able to make it. We're hoping to send some money so their mom can put a little party together. - At least have a few of the most important people to Becky to be there.

I guess that's all.

Just waiting to be able to be happy again

never any time

I am the world's greatest at planning things out or beginning projects and not following through...
Just ask my wedding planning notebook, the pile of half worked yarn and knitting needles under my bed, the unfinished scrapbooks, photos and supplies in my closet...I really could keep going.

Just an observation about myself.

Sammy's first birthday is just a little less than a month and a half away! He starts Phenex-2 this week and gets his tubes put in his ears next Wednesday.

Isaiah lost his first tooth on Saturday and is fixin to lose another. His adult teeth came in behind the baby teeth a month or so ago. The dentist walked me through the plan. We let the crowded adult teeth move in before we "make room" (ie pull a few teeth) Then we have to widen his palate around age 9. We will most likely need to give him braces as well. His dentist really is awesome though.

Kenny and I have been gradually working on home improvements in just a month we've:
gotten and installed screen doors.
planted a garden and cleaned out 90% of the gutters.
painted the kitchen.

we're hoping to have a lot more done in the coming weekends.
we have a little table that needs to be sanded and stained or painted.
the screen doors need to be painted white
the living room will be painted this weekend.
the deck needs to be pressure washed and stained (we have the stain, we just need the funds to rent a pressure washer).

I REALLY need to find the time and deal with the mommy guilt and get a gym membership. I don't want my health to become and even bigger issue than it already is.

I need to go plan out Sammy's meals, make his formula and get things ready for granny tomorrow. Glad I could find a few minutes to write.

Yeah.

So I totally haven't written in here in ages. I've not even kept up with the Opendiary that I've written at for 10 years.

bleh.

moved from OD: 10.13.08: Let's set some goals!

See the previous entry for non-weight loss talk .

After some decision making and talking with Kenny. I've set the following goals.



WW Mandatory goal: 10%

25 lbs / 25 lbs / 234.4 lbs

WW reward: 10% Keychain

Hair cut & color by Van.

time frame: by Christmas 2008



Under 200 lbs.

35.4 lbs / 60.4 lbs / 199 lbs

Cut up Lane Bryant Card & buy an outfit from Old Navy.

time frame: by June 2009



Ultimate Goal

to be adjusted - as WW considers my highest allowable weight to be 141.

44 lbs / 104.4 lbs / 155 lbs

New wardrobe - reconstructive surgery possibly

WEDDING - yes that's right: we will have an October '09 wedding if I make it to goal by then.

time frame: October 2009 - 1 year.

moved from OD: 10.13.08

The day after we took Samuel to the pediatrician Isaiah started a fever and his "neck really hurts" - so I took him to the after hours clinic. They did a strep test that came back negative. His throat still hurt bad two days later so I took him to the pediatrician. Strep throat. Yeah. He's better now, as is Samuel (minus the rattling in his chest and the croupy sounding cough - though the cough is muuuuch less frequent).

I applied for an accounts payable job on Craigslist last night. $16.50/hr. I just worry that I don't have what it takes to get a better job. I'm not very confident and even though I have that Associates Degree I learned nothing in those accounting courses. They crammed so much info into 10 weeks that it never could sink in.

Tonight is Weight Watchers - we'll see how that goes. I anticipate that it won't go too well.

I'm excited that Kenny's mom and sister(s?) and our new little nephew MIGHT be coming down around Christmas! I have to work (as always) but Kenny and the boys really need the time with Pam (I really wish I didn't have to work, though - I enjoy having them around too, you know!)



**weighed in tonight!**

lost 1.8 lbs for a total of 6.2 lbs in two weeks!

moved from OD: 10.06.08: ww & rsv

Yay! I lost 4.4 lbs for my first week!



Boo! Samuel has an ear infection and needs breathing treatments every 4 hours. They tested for RSV but didn't say anything else. He juuuust finished an antibiotic that was prescribed previously for sinus issues. He's miserable.

moved from OD: 09.28.08: WW

Tomorrow after work I am attending a Weight Watchers meeting. My first in about 2 years - my third go around with meetings. The first time in 2004 - I went for 16 weeks and lost 34 lbs. I started at 256. The second time in 2006 I went for 5 weeks and lost 15 lbs. - I started at 256. This time I hope to stick with it longer - and am starting, according to my scale, at 256. Each time I gave up because of money and time constraints. Money is still tight but I believe I am worth $13 and 45 minutes per week. I give my all to my job 40 hours a week, and to my family the remaining time. I don't ever give myself time.

I tried a few weeks ago to begin doing WW at home - I just give in too easily - because I don't have the accountability of the meetings. Hopefully with the accountability back I will do good.

moved from OD: 09.25.08: Ok, ok, Davney!

Davney has gotten on to me to update. I guess I have been MIA for a while now.

Things are just too much some days. The world really needs to stop so I can get off. I've been having crazy mood swings. High highs and super low lows. Beginning to wonder if my mom's manic is hereditary.

My body hasn't become used to the IUD yet either. So I'm bleeding (at least spotting) everyday. Though I still hope that Sarah Palin doesn't take BC away from us because really I don't need anymore kids anytime soon.

Kenny and I are in one of our aggitated periods. Every now and again we both get aggitated at one another and don't get along as spledidly as usual. It always passes - but it doesn't help when he is my go to guy.

Samuel is on Amoxicillin for a sinus infection. And DROOLING buckets. BUCKETS! Like Isaiah did around 6 months. The doctor said he very well could be teething ::sighs:: he is SUPPOSED to be my little baby. Not my big growing up baby.

Isaiah is doing great. He went to the dentist on Wednesday and Dr. Gill said he has NO cavities. Yay! He also told me that Isaiah is getting more brave with each visit. That's a definite plus.

I was $30 short yesterday and had to write it up today. Gah! I balanced for months without having issues. =/

I had a little mini breakdown at work today - not so pretty. Thank God for my co-workers.

Tonight the boys and I are home alone. Kenny started back to school for his Bachelors. Thursday nights for the next 18 months. And lots needs to be done. Both boys bathed, Isaiah's homework, Samuel fed (already fed saiah) and cupcakes made for babyshower tomorrow. boyohboy.

moved from OD: 09.09.08: Emory Visit

t 8:30 am Kenny and I found ourselves at the pediatrians office for Samuel's vaccinations. Oy. We took him to the exam room, got him undressed then carried him down the hall to the scales... He weighs 12 lbs 6.6 oz. We carried him back to the exam room where they measured him (23 inches)...then took his temperature (twice! - and we all know that was unpleasant as the only place the pediatrician will take a baby's temp is in the rear) then geared up for some vaccines. Three shots - 2 in one leg, 1 in the other - oh, and one orally for the rotavirus. He was fine after the initial screams...so we headed out on the road to Emory.

We stopped to eat lunch at a Steak and Shake (I had a gift card from one of my best customers, so we ate for free) then headed on up to Emory where we met Samuel's girlfriend Lily, who just happened to have an appointment the same day! Lily was diagnosed about a week and a half after Samuel was. The appointment went well except Samuel was suuuuper cranky from the shots...

First they took his photo. They'll do this at every appointment to track his appearance. They did a blood draw (which of course made matters worse) then Nyssa the nutritionist came in and met with us. We learned what life will be like when Samuel is four months and can begin to eat solids. (jarred baby foods and cereal). Dr. Blackston (the geneticist) came in and talked to us about our concerns. He said the Simian creases are not true simian creases and that at least 8% of the population have them with no other issues. He also said that while he has a high palate it really is nothing to be concerned about right now. He told us that he will continue to watch them just in case but he wouldn't be too worried. Then he asked us developmental questions about Samuel and he passed with flying colors. I really like him... he got on to Kenny for not marrying me already. He told him to buy me a ring this weekend (I wish we had the money!) and by next visit (in November) he wanted to see us married. Hehe. As he was leaving he said the marriage counseling session is over as Dr. Singh came in. She is the Metabolic nutritionist that heads off the Emory clinic. She talked to us about her concerns (Samuel is growing in girth moreso than height) and that we will need to make some formula adjustments and look at his guide very closely. She makes me a bit nervous. All in all it was a good visit. And I left feeling a bit relieved.

I'm exhausted and heading to bed.

I'm getting back on the WW horse. I don't have the money to attend meetings but I need to get myself started. I know outwardly telling people about it, I HAVE to stick to it... because there will always be the "how is WW going?" questions... I got this App for my myspace called Lose for Good Campaign... so that will give some accountability.

Our lives are busy and hectic with having two kids and working full time (plus kenny starts back to school for his Bachelor's in a few weeks!) and when Samuel starts eating food it will get even more stressful...

But I need to commit to this for me....and for them. The eating part won't be a problem...I've done WW before and can count points with my eyes closed. It's the getting in time to exercise that's a problem. But I'll just start with the changes in eating first.

Schedule

I haven't written here in a while -i'm mostly writing at opendiary...
But i needed to post this here.

8/24-25
P.M. 8:45-9:15..3.5 oz
A.M. 12:30......1.5 oz (2 oz spilled, didn't take more)
.....5:20.......3.5 oz.
.....9:45-10....3.5 oz.
P.M. 1-1:30.....3.5 oz.
.....3:45-4.....3.5 oz.
.....5:45-6:15..3.5 oz.
.....7:45.......3.0 oz.

8/25-26
P.M. 9:45.......3.5 oz.
A.M. 1:30.......3.5 oz.
.....5:30-6:15..2.5 oz.

trying to discern a pattern. This is it so far.

acceptance.

I'm grateful that Kenny and I had the appointment at Emory with Dr. Singh, Nissa (the nutritionist) and Erin (the genetic counselor). I've spent the last several days crying constantly (granted the crying jags aren't over but I am beginning to see that the glass is full halfway - as Dr. Singh says it) and they've just helped me accept the situation.

First we met with Erin, who we met at the hospital last week when we took Samuel for his follow up blood draw. She talked to us about why Samuel has pku - Kenny and I are both carriers for the gene and Samuel happened to get the recessive gene from both of us. When both parents are carriers there is a one in four chance that their child will have it. No one knows they are a carrier unless, like us, they have a child with pku - or they go through thousands of dollars worth of genetic testing. Isaiah has a 1 in three chance of being a carrier. Samuel will only have a pku child if he has a baby with another pku carrier.

Then we met with Dr. Singh. She spoke with us about her past with pku. She has been working with pku patients for 15 years. She and her staff are the leading researchers of pku in the country. People from all over the country come to train under her staff. She is currently doing a drug study on a drug that can help pku-ers eat more protein. She is very protective of her patients and has even called child protective services on parents that deliberately didn't follow instructions on diet for their child or reporting labs. -She considers it child abuse because the parents KNOWS the outcome (brain damage) if their child doesn't follow the strict diet.

Then we met with Nyssa. She is the pku dietician. She taught us how to measure his formulas so he gets just the right amount of protein and the right amount of periflex (pku formula). She taught us how to do his weekly blood draws and gave us all the stuff to get started.

They were all so nice and so supportive. We have cell, home and pager numbers for all of them in case we have any questions ANY TIME.

It's still scary not knowing if Samuel will be ok in the end (no one can predict that)...but I know that Kenny and I are a great team and will do everything in our power to make it possible.

We have a lot of work ahead of us.

July 3, 2008: Another trip to another hospital.

This afternoon the pediatrician called me and told me that a genetic counselor was about to call me - Samuel failed his PKU test. We were told we needed to get to Atlanta immediately. I called Kenny, he left work and we were on the road by 3:45 - We got there at 6:30... he was tested at 7:00 - we spoke to the genetic counselor and then left. We got home at 10:30.

I don't want to really get into it all but I'll tell you this...

1. his numbers were 5 times the high normal - they retested him at the hospital to be sure that it is really PKU. We'll find out tomorrow afternoon but she said that with the numbers he had its highly unlikely that its not PKU. We'll go back Monday if it is PKU to learn how to prepare the formula and track his numbers.

2. I can't breastfeed anymore. He will have to be on special formula. $500 worth a month. (She said WIC would cover it).

Here's the website they gave me for information.

http://www.newbornscreening.info/Parents/aminoaciddisorders/PKU.html

It's been one hell of a first week.



I wish my mom was here.

July 3, 2008: exhausted, discouraged, worried.

Took Samuel to the pediatrician on Tuesday.. His bilirubin went up from 12.1 the day he left the hospital to 15.something or other. Meaning his jaundice was getting worse (normal is 6, i think she said).

Took him back yesterday (they told me they wanted to see him everyday until further notice) and it went down to 13. something. She said that it was ok to not bring him back until next week for his 2 week visit. We just have to keep feeding (so he can poop it out) and keep him in sunlight. She said alot of the elevated numbers is probably just from the bruising he has all over him from all the various IV placements. (top of each hand, underside of each wrist, feet, top of head). She said the body has to break that down and it could heighten the jaundice.

He's doing really good.

Me? I had a little bit of a breakdown last night. I'm exhausted. (it's good though, I'm not really complaining about that! It's just that exhaustion tends to heighten other emotions). I'm discouraged - We're having difficulty in the breastfeeding department.

* i don't feel "let down" like they say i will. (but he's still getting some milk, because I leak on him when I go to feed him sometimes.
* my breasts aren't hard like they say they will be when milk comes in.
* Samuel is having a bit of trouble latching every now and again. and he doesn't get much more than nipple in his mouth because well, lets face it, my nipples are kinda on the large side.
* He's still taking the supplemental bottle with every feeding. Anywhere from 30-50 mL per feeding.



And I'm worried about making ends meet while I am on maternity leave. I've also thought about going back to work part time only when my maternity leave is up... but I don't forsee that happening- we rely too much on my pay right now. It just seems like it would "fix" alot of the problems we are facing right now. - who is going to pick Isaiah up from school when school starts back, the cost of the sitter... i could go on but you get the idea.

June 30, 2008 : Samuel is home!

Samuel is where he needs to be. Right here at home with us!

Before we left the hospital they had me breastfeed him and then supplement with the bottle (because he's been getting formula at the hospital since my milk hasn't come in yet.) So we are breastfeeding (he does pretty well, but falls asleep rather quickly) and when he's done about 15 minutes on each side we go ahead and give him a bottle. He didn't finish his bottle after he breastfed at the hospital. To me that's an accomplishment! Hopefully, now my body will realize there is a baby eating rather than a pump and my milk will show up.



** Just a little while ago he fell asleep at the breast and i couldn't get him to wake up, so I let him nap some more. He woke ready to eat. Ate 15 minutes at eat breast and then didn't want the bottle!!!! Is it silly that that makes me feel like I'm on cloud 9?

e went to the hospital this morning for a feeding and Samuel is doing great! He lost the water weight they were hoping for and is eating more. While we were there they even moved him to a regular bassinet. If all goes well through the night we will get to take him home tomorrow!!

She worried me a bit because she told us he has something called a simian crease on both of his hands. She told us that it is indicative of down syndrome or any one of numerous syndromes or defects. She told us that she didn't see any other signs of downs. But I've now been searching the internet for more information and can't find any. Does anyone know anything about simian creases? The doctor told me that I had one on my left hand but after researching the photos I believe she was either totally mistaken or just wanted us to feel better.

Home alone

Kenny just dropped me off at home - he's on his way to get Isaiah from Kenny's dad's house. I was discharged at 11 am this morning but they let us wait around until Samuel's 2 p.m. feeding and vitals. My nurse wanted me to stay in at the hospital until Sam is released, but I was going out of my mind in there.

Breastfeeding is not going so well. The first day he only got an IV.. yesterday evening they finally brought me a pump. I pumped every hour and still haven't even gotten more than a drop or two of colostrum. They've begun giving him formula in the meantime through a tube that runs to his stomach. They have him suck a pacie while they're running the tube so that he doesn't think that you just magically fill up- there is work involved. They just told me to go home and keep pumping...that hopefully I will stimulate milk flow.

1:20 p.m. was the start of day three. I'm beginning to get really discouraged about breastfeeding. I was so excited about it and then this happened. He has just been struggling too much to breathe that he didn't have the ability to suckle. Believe me, we tried!

We'll go back tomorrow to visit.

They've been able to completely pull him off of CPAP. Now they are just trying to get him to urinate more and get rid of the fluid in his lungs. I got to hold him for the first time since those first moments, this afternoon. They said if everything continues at this rate, he can be home Monday or Tuesday.

If you haven't seen the photos feel free to go to Kenny's myspace. myspace.com/highclass_kt When I get the gumption I'll post photos here.

Samuel Update

ay one (6/26 Kenny is writing this. Pics are posted at www.myspace.com/highclass_kt)





Angel managed to push Samuel Elliot out in record time. You would think she has done this before. Little Sam was 6 lb 10 oz and 19 3/4 inches long. Good lookin kid. We got to hold him for the first hour before I had to walk him back to the nursery. People started comming in and waiting on the baby which was supposed to come back to us in an hour. After about 90 minutes a nurse comes in and tells us that she isnt happy with his color and that she was getting a consult with a Dr on hand. They checked his blood oxygen level and discovered it was at 70% where it needs to be at 90% or above. Because of this they had to take him to the NICU with lung issues. They were unable to tell us at this point what was going on. We were told that infection, premature lung disease, and fluid in his lungs were all possible issues. After a few more hours of worry we were given the chance to see him. They were still unsure as to what was wrong, but he had stableized. Thry a CPap they were giving him oxygen in a higher than normal dose and with a bit more pressure. The CPap is just tubes to the nose that puff air into his lungs. He is being kept in the NICU and we are no longer given the chance to hold him. The Dr's attempt to reassure us on the situation over and over again, but when it ends with "But we really dont know yet", it isnt as helpful as we would like.

Day 2 6/27
Anyway, we got back up to the hospital to find out Samuel was doing a bit better. X-rays today showed that his left lung seems to be the problem, tho they still cant say for certin what it is. They believe that it is fluid in his lings and should clear up. Infection was ruled out because his blood work came back clean. Thru the night they had lowered his oxygen in his tubes from 33% down to 21% (the normal level that we breath), however the pressure in the tubes is needing to stay high because when they lower it he has troubles breathing. Dad and Isaiah got to go in and see him for the first time today. Because he is being kept asleep they didnt get any reaction.
Angel got to go in this evening and help feed him his first formula. (To this point all his food and water came by way of his IV) Angel held the feeding tube and got to hold his had. After a while he started to have hickups. Thru the night they are planning to lower the oxygen pressure levels slowly adn see how he reacts. Over the next few days they hope to have him ready to come home, however they said they are leary to predict anything because it could be weeks. His status can change from hour to hour and can be hard to predict.

nothing but nerves

So we leave the house tonight at about 11:30 to head up to the hospital. That's barely 6 hours from now. I've been a ball of nerves since this time last night. I can't even give you a real answer as to why I'm so nervous. Just pray that everything goes ok!





We're heading out now, to the hospital. Isaiah just broke my heart. He told me that he will miss me while I am gone. The only time we've been apart is 1. when he was pretty young, Pam took him for a few days to NC with her. 2. he went camping overnight with Kenny and his friend's house. This is big business to us. Right now he's camped out on the air mattress in the living room with his uncle jimmy. He just said "I don't like that you and momma are leaving. You'll never come back again." see what i mean?

::sighs::

I guess I'll update again on Saturday... if that's the day we come home.

A date is set.

Ha! And i know what half of you are thinking! No, Kenny hasn't proposed and we haven't set a wedding date =P



I went to my regular OB today. He said we would check my cervix and decide from there when to induce. He just barely had his fingers inserted when he said "Oh yes, you will definitely be having this baby next week!"

"How do you figure?" I asked.

"Well, I'm touching his head."

Just then Samuel kicked.

"I'm pretty sure his head feels your fingers!"

"Yeah, I mean, I am reeeeally touching his head. Let me go make a call."

he leaves, I get cleaned up and he comes back in.

"How does Wednesday at midnight sound? You'll be 38 weeks, considered full term and we shouldn't have to worry about GD or Pre-E again. You should have a fairly quick delivery."



Yeah, so Samuel should be born Thursday, June 26. Unless of course, I go before then!