Broken Promises

After Anna's last appointment at the GI, I made a promise to myself that I would no longer weigh Anna except at her appointments. I would feed her all she would eat and tube feed her daily and not worry in the in between times. Her last appointment was in May and I had done so well...until yesterday. Without really even thinking I just threw her onto the scale. What a mistake!!! She has lost weight again. She was up to 26 lbs at her last appointment. I just knew with the progress we made in daytime tube feedings that her weight was going up. I was so wrong. She weighed in yesterday at 23.8 lbs and she is 39 inches tall at 31 months. Boo!!! It is amazing the insanity that comes with an underweight child. I am back to obsessing about each and every calorie she eats. Here is the latest growth chart and I am not really all too pleased with it. I know it is difficult to see but it has length on top and she is 100% and the bottom is weight and she is less than the 5%. I just do not understand how she can be getting more calories and still losing weight. Any ideas?

WANTED: Extra Arms

Here is a little clip from bible school. I just can't get enough of their sweet little voices! Forgive the horrible recording skills...I was trying to keep Anna under control with one hand and film with the other. Keeping Anna under control with 2 hands is hard enough so you get my point, right? I have been earnestly praying for another couple of arms but God has denied my requests thus far. I really think when you are given a special needs kid you should get at least one extra set of arms. I think the lady in front of me thought she would add to the challenge by refusing to keep her head still. Oh well, I did the best I could!

2pm-4pm = 2pm-9am?

We had Carly's 6th birthday party yesterday. She wanted a pool party so that is what we had. I have to admit I was a bit nervous about having a bunch of kids in the pool and feeling responsible for their safety but all went well. There were enough adults there to help me keep eyes on the kids and that helped. The party was supposed to be from 2-4 but ended up lasting until this morning because a bunch of the little girls ended up spending the night. We had 5 little girls in addition to my own. It was our first slumber party and I must say I am exhausted! 2 of the little girls just could not go to sleep and were up until 1 this morning. I kept trying to go to sleep but then I would hear the pitter patter of their feet running up and down the hallway and I would have to get up again. They are all gone home now and I am not sad about that! Carly had a great time though and that was what it was all about. She had asked my parents for a tent for her birthday and they went all out! She and all of her friends were planning on spending the night in the tent outside and were all settled with their bedding and then the neighbors son who is 7 came over and shook the tent and scared them half to death. Wow, 6 year old girls can really squeal! That was the official end of spending the night in the tent. So after a night of partying I am ready for a nap. I partied all night a lot in college but I think this was far more exhausting, or maybe I am getting old.

I wrote this post this morning and have been trying to post it with pictures all day and blogger is not cooperating. GRRR. Anyway, Carly went to Vacation Bible School all week last week and tonight was their performance night. It was awesome to see her so excited about her performance- she did an awesome job, they all did! If you get a chance to send your child to the "Saddle Ridge Ranch" (that is the name of the VBS cirriculum used in a lot of churches this year) you should really send your kid! Carly learned so much valuable stuff this year. Most importantly she learned that "I am who the great I Am says I am. He says that I am remarkably wonderfully made, and I am who he says I am."

Higher Than My Ways

The girls helped make and then independently decorated my birthday cake

The decorating in progress

The other day Carly decided she wanted to be a vet and opened her room up for all of her sick animals (ok, so maybe they were stuffed) to come and be healed. This was the sign she hung on her door for her clinic.

"Is Your Dog Sick?"

Work was great today! Our census is down a bit so things are moving at a slower pace and that is fine with me. I like the fast pace of the ICU but every now and then it is nice to have a day to just breathe! I am hoping tomorrow will be more of the same. I have been the charge nurse most of my shifts lately and it is getting old. I am ready to go back to taking care of the patients. My new intern will be starting soon so that means no more charging for awhile and I am thankful for that. I think this new intern will be great. He did his last clinical rotation with us and seemed very bright and eager to learn. I am so glad to be working in a place that really fosters growth in new nurses instead of eating our young like most ICUs do.

I had the most incredible conversation yesterday with a woman who has come into my life through sort of a strange set of circumstances but the meeting itself was something only God could have orchestrated. She has had some terrible things happen in her life and she has been able to overcome and forgive and her testimony is awe inspiring! She was able to make me understand so many things and realize that I really have come so far on this journey and that I have to press on. She said that even years later she still has anger come up but she takes it all to God in prayer and he honors that. I was so glad to hear that my emotions are typical and that I am not alone in what happens with me. You may wonder why the subject of forgiveness comes up in my blog so much. It is because it is something I face everyday. If a friend hurts you then you likely don't see the friend anymore and so you can in essence ignore the pain. Every time I see Anna or hook up her feeding tube or cram her full of medicine, it hurts. I know the Lord has plans for her and they are far greater than I could ever imagine but having to do those things is a constant reminder of what happened. I cannot just block out what I am faced with on a daily basis. Don't get me wrong, there are a ton of joyous times too but underneath it all, the pain is still there. I think God has great plans for Anna and that she will touch so many lives that her trials will pale in comparison and I cannot wait for that day! I know she has already blessed me with so much. God does not work on my time schedule though. His ways are higher than my ways and thank goodness because most of the time my ways are certainly not the best...

Confession Time

I have a confession to make. I posted a few posts back about something I had found on the Texas Medical Board Website about a doctor involved with my and Anna's medical care. After posting that I began to wrestle with the Lord again about the spirit of unforgiveness that was shown there. I had posted about forgiving Mr. Dr. K but have remained angry with Mrs. Dr. K still. She had said some things to me that I felt were unkind. After forgiving Mr. I was rocking along and just kind of felt "done" with all of that. Then I began to feel the anger welling up inside of me again. I resisted it for a bit but then it became painfully clear that my work with forgiveness was not complete. I had given God most of my heart but held on to a tiny little bit of anger. It isn't that I had not forgiven Mr but in order to completely forgive him I have to forgive her too. I have to forgive the whole situation and not just 99% of it. I know that forgiveness doesn't mean that anger will not sometimes surface again but it means that I have to chose to do the right thing with that anger. I choose to take it to God instead of letting it make me feel defeated. When Jesus said we have to forgive "seventy times seven" I think he just meant that as a figure and not a literal number. It just meant you have to forgive over and over without ceasing. That doesn't always mean forgiving different offenses but sometimes it means being willing to forgive the same offense every time it comes back up. I think this will be one of those things I have to forgive "seventy times seven." God is really working in my life and I want to be obedient.

Awesome Things

I had a great birthday today but there were far more awesome things going on! It was also Father's Day and that was great, too, but still not the most awesome thing going on today. My brother in law has been in Iraq for 6 months. He is a surgeon and had the task of caring for wounded soldiers and Iraqi's also. My sister got word a couple of weeks ago that he would be coming home but she was somehow able to keep it a secret from the kids. Today, on Father's Day, my sister pretended it was business as usual and took the kids to Sunday school. She then left and went to the base and picked up Anthony. She got back to the church and Anthony picked his kids up from their classes- much to their surprise. Ainsley and Sam were overjoyed. Charlie was only 5 months old when Anthony left so I am not sure how excited he really was. I cannot imagine my sister's excitement. I am so proud of how she has kept everything under control while he was gone. They are a family to be admired! I must confess there was a time when my sister first married Anthony that I did not like him very much. I was so jealous that he had my sister's time and that I was no longer her #1. As with all things, time makes it better and now he is a person I love and am so proud to call my brother! If these pictures do not make you proud to be an American then nothing will!

We Will All Have Fins

I think we will all have fins by the end of summer! We went swimming after work last night and again today. The kids cannot seem to get enough of it. Anna went to daycare today so she was not with us. As I have said before, Anna takes up most of my time and so Carly needs and deserves some time with me and without her sister. She and Kenzie worked on perfecting their "twist" as they call if when coming off the slide. I covered them with sunscreen and then went to put it on myself and the can ran out. I love the aerosol kind but it is hard to tell when it is almost empty. They were adequately protected, me, not so much. I am already quite red and have only been gone from the pool for about 2 hours. I know it will continue to get worse for hours to come. Oh well, I would much rather have the sunburn than have to have sunburned kids who whine about it every 30 seconds. Moral of the story, carry more than one can of sunscreen with me at a time- I guess that is why they sold it in a 2 pack.

Kenneth's truck was having problems yesterday so he took it to the shop and they said it was a bad cam sensor (whatever that is) that needs to be replaced. They ordered the part and will put it on early next week. The weird thing is that the cam sensor on my car went out last year. What is this cam sensor and is it totally normal for them to go out on two different vehicles within a year? (Don't worry, I'm getting to the point) So Carly hears what the part Kenneth needs is and says to him,"Hmm, Momma had to put a new one of those on her car before." So my question is this- why can my 5 year old remember the names of random car parts but cannot seem to remember that her dirty underwear goes in the laundry and not in her floor? Just wondering...

Anna is still doing well with her daytime feedings. Her regular teacher was gone today and the sub got a bit freaked out and thought Anna's button had come out. I arrived to pick her up and found the teachers frantically calling me and Kenneth. Everything was fine. I again assured them they are not going to hurt her and even if the button were to come out not to panic, it will be ok.

I am off work for 4 days and am quite excited. Father's day and my birthday are both Sunday so we will hopefully do something fun. Kenneth is also off Saturday and Sunday. Yay for a family filled weekend!

Hallelujah

Anna has worn her backpack and gotten her tube feedings during the day at daycare for 2 days now and it has gone perfectly! She has tolerated more tube feeding the past 2 days than she has in quite a while. Yesterday she got an extra 375 calories and today she got 475. That is huge! Her teachers have been so awesome and have said they haven't had any problems at all. Luckily her main teacher used to work in nursing home many years ago and so she is familiar with g tubes. She also has a 6 month old daughter who required heart surgery at just a few days old so she is no stranger to kids with medical problems either. I see once again how God's plan is so amazing and how he puts the right people in the right place at the right time. It is no accident and no coincidence! Her teacher also said Anna is still eating well at lunch and is taking better naps than she ever has before. I pray it continues...

Refreshed

I dropped Anna off at daycare this morning and taught the teachers how to use Anna's pump. They seemed comfortable with it and were able to operate it without any problems. I really feel like this is going to work. I have been feeling a lot lately like I want to move. I do not know why and I think I have just been frustrated with some things lately and when I am frustrated my first instinct a lot of times is to run. But then after I dropped Anna off today I realized I am right where God wants me and needs me to be. I am so blessed to be living in a place where I can take my special needs child to a daycare with her tube feedings running and leave her and not have any fear about how things will go. My child is somewhere that she is loved and cared for and where they truly have her best interests at heart. I am so thankful for the wonderful people in my life and while I was frustrated in my last post with a few people I have to say that for the most part I am surrounded by wonderful people who love and care for me and my family. God has blessed me far more than I deserve and sometimes it is so easy to get bogged down with the day to day that I forget to see the big picture. I saw it today and I am so grateful!

Carly and I are spending the day together today and we (and when I say "we" I mean "she") has quite an agenda. We have birthday party invitations to finish and mail, we are having lunch with my mom, and then Carly has requested that we go to the cemetery because she wants to see her Grandpa. There are many other things on her agenda but I am not sure we will get to all of them today. Kenneth's dad died about 3 weeks after we got married. He had been very sick for quite some time and I sometimes think he held on just long enough to see his son get married. Anyway, Carly has had many questions about him lately and she wants to go visit him and put a few things by his headstone. We have always talked about him to her and want her to know him the best that she can so I guess we will be visiting the cemetery today. It seems like kind of a strange request from a 5 year old but I will not stand in her way.

Thomas Richard Watson ( I think this was taken while he was in Vietnam)

He is missed by all who knew him and even some who never got the chance to know him

A Slap In The Face

Kenzie and Carly

Finally braving the slide

Anna and her sweet cousin Kacy

Anna has had enough of the sun

I think we will spend about 99% of the summer in the pool. The kids love it and I do too. I love it for the fun they have and I love it for the quality of sleep it produces in them afterwards! I think I lost my mind on Saturday because I took 5 kids swimming by myself. They were all well behaved though and it went much better than I expected. Anna didn't last real long though- she gets cold so easily and then is ready to get out. I think she needs a wet suit but I don't know if they make them as small as she is. I had a house full of kids most of the week last week- day and night. I just love having them all here. I wanted a bigger family but since it just isn't in the cards for us I will just enjoy everybody else's kids instead.

I had a really emotional day at work today. It wasn't that the patients were particularly sick it was that my eyes were really opened to the way people feel about people with disabilities. We have a young patient with cerebral palsy who was admitted with pneumonia. He is sick enough to be in ICU but no where near death's door. He has a fiance that stays with him most of the time. I heard comments from my coworkers today like "why is she with him" and "we can't fix him." My heart broke. I politely explained to them as matter of factly as I could that he is a person worthy of love. I said that even though Anna is 2 and cute right now she will grow up and she will STILL have cerebral palsy and she will still be just as worthy of love then as she is now. As far as the "we can't fix him" comment I politely reminded them that he didn't come in asking us to fix his CP. He was admitted for pneumonia and that yes, we can fix that and in fact he is young and probably likes his life and is not ready to give up and die like they think he should and that there are far worse things in life than CP- things like being narrow minded and ignorant. These are the people who supposedly accept my daughter like she is, but obviously they don't. They see disabled people as damaged goods. It was a huge slap in the face. Then after my statements to them I got looks of pity and that just made it worse. Our lives are not something to be pitied. We are happy people who are likely living far richer lives than those who cannot see past the tip of their nose which they are looking down on us from. Let me clarify- this was not the majority of the people I work with, mainly just 2, but 2 that had really acted as if they cared. Oh well, I guess better to know now than later who they really are.


In other interesting news...I was looking up some different doctors on the Texas Medical Board website today because they seem sketchy and I wanted to see if there was anything pertinent about them on that website. In doing so I looked up the family practice doctor who cared for me during my pregnancy. His record is clean and I was not really all that surprised. I do not think he is a bad doctor I just think he got in over his head. During my pregnancy and hospitalization he "consulted" with his wife though who is an ob/gyn. She never was officially consulted but they supposedly discussed my case and she sometimes covered for him and therefore rounded on me. I think he trusted her opinion on what to do or not do with me when he wasn't quite sure. So anyway, in my search I found this about her. Hmmm, perhaps not the best choice for a consultant huh?

"ON AUGUST 21, 2009, THE BOARD AND DR. K ENTERED INTO AN AGREED ORDER REQUIRING THAT WITHIN ONE YEAR SHE OBTAIN EIGHT TO 10 HOURS OF CONTINUING MEDICAL EDUCATION IN OBSTETRIC ULTRASOUND OR FETAL MONITORING; 10 HOURS IN HIGH-RISK OBSTETRICS AND 10 HOURS IN MEDICAL RECORDKEEPING. THE ACTION WAS BASED ON DR. K'S FAILURE TO MEETING THE STANDARD OF CARE OF A PATIENT AND HER BABY DURING FINAL STAGES OF LABOR IN NOT RECOGNIZING THE SEVERITY OF FETAL DISTRESS AND NOT TIMELY ADDRESSING FETAL STRIP ABNORMALITIES."

Daytime Pumping

I normally do not let the dogs in the house but my nephew and his friend were outside shooting clay pigeons and the dogs freaked out. Anna decided to read books to Rocko so he would go to sleep.

After she finished reading she said,"shhh, Ocko seepy." (Shhhh, Rocko is sleeping)

Then I told her to go put her crayons and books in her room. She told me,"No, I seepy wif Ocko." (No, I'm sleeping with Rocko)

I received some really good news today. I spoke with the daycare director who said she would be more than happy to do whatever she could to help Anna including daytime pump feedings!!! I am so excited that maybe this will allow Anna to get the calories she needs without vomiting all the time and it will free her up from the pump at night. I have to give an inservice type thing to train the teachers how it works and what to do and all that jazz but I am confident they can handle it. I think I will teach them at the beginning of next week and then start after that. I cannot stress how much of an answered prayer this is! Here is what the backpack looks like. It holds the pump and 500ml of food.

And here is Carly going "superfast hyperblast" on her bike (as she calls it)

What's Your Trick?

I thought there must be a full moon since the past two days at work were psycho at best. I was wrong. People are just crazy and it doesn't even matter what the moon is doing. The ICU I work in has 20 beds and currently 4 of those 20 are taken up with drug overdoses. One if them is a paranoid schizophrenic who overdosed on meth- he just thought he was paranoid before. Anyway, I am off until Sunday except for an ACLS class on Friday and I am so glad. I need a break from the chaos up there!

Please continue to keep my brother in law in your prayers. He is still serving in Iraq and will hopefully be coming home in the next week or two. He was about to go to the mess tent to eat dinner when he heard some strange noises and then "incoming" and then an explosion. The mess tent was destroyed but luckily it was about 15 minutes before dinner so only a few people were in there. I think that if you turn off the news it becomes easy to forget that we are still at war. Whether or not you support the war doesn't really matter. These men and women have families who love them and want them to come home. I hope Anthony's homecoming is soon! I know my sister and her kids are more than ready also!

We have been tube feeding Anna during the day and it is going well so far. I did a trial run at church last Sunday. I dropped her off in the nursery and then went to Sunday School. I was able to check on her between Sunday School and church and then went to church and picked her up afterwards. They give you a pager so if they need you to come get your kid during church they just page you. It made me feel safer to have the pager and to know I was only seconds away from Anna if they needed me. But they didn't need me and I was so happy! Anna is still not thrilled about wearing the backpack but she tolerates it. She had it on the other day at Wal-Mart and this man kept saying, "I can't believe you make her carry all of your stuff...You should get a purse..." He thought he was funny. I laughed and tried to humor him. Then he kept saying it. I kept laughing and then on the 4th or 5th time I had finally had enough. I nicely told him that she has a feeding tube and that backpack holds her pump and food. He was mortified. I tried not to take it to that level but he just kept pushing me. He then said, "Oh ma'am, I am so sorry. Will she be ok?" I told him it was all fine and that she is and will be fine. He walked away with his head down. I could tell he felt bad. I did not intend to make him feel bad but I could only put up with the joking so many times. I do not want people to feel bad for asking- I am all about educating. But for goodness sakes, just ask . I am thinking about getting the backpack embroidered with her name on it to make it cuter, or maybe I'll just have it say, "I can eat, walk, talk, and chew gum at the same time, what's you trick?"

Clothes Make All The Difference

I often find myself defending my decisions about what I choose to do for Anna regarding her feeding problems. I base my decisions on facts and the evidence so far collected which is that when she got her button and started getting nutrition, she started doing better in all areas of life. When she had the balloon dilation she started doing even more. I really believe the key to Anna's success is nutrition. I can see with clothes on her that she looks ok. Tiny and skinny, but ok. She is 2 1/2 and still wearing a size 4 diaper. She has been in a size 4 for over a year now. I think those who are questioning what we choose to do should see what we see... underneath her clothes. She truly is skin and bones and that, my friends, is why I worry so much about her nutrition.

Wearing her clothes and looking pretty normal

She would not cooperate with the picture taking but I think you can see what I am talking about. The happy news is that she is eating a Rice Krispy Treat!

On a side note- I have a friend who has a special needs son. He has Prader Willi syndrome. Anyway, the school psychologist called her to set up a time for some testing and to start on his IEP and she said, "So, does he have any retardation issues going on?" Seriously, isn't this 2010? Retardation issues going on? Are you kidding me? Luckily my friend is not easily offended.

To Tell The Truth

Prior to meeting and marrying Kenneth my life was, well, let's just say I am not proud of all of the stupid things I did. I drank way too much alcohol, smoked way too many cigarettes, broke way too many laws, did way too many drugs, made more stupid decisions than I can even remember... you get the idea. I stayed in college for 8 years just playing. I would start to make progress and then quickly change my major in an effort to never grow up and never have to take responsibility for anything. I was, as they call it, "finding my way." I am not really proud of all I did but it made me wiser in a lot of ways and made me who I am today. I am thankful that lifestyle is no longer mine. I have always said that when my kids were old enough to ask about some of the stupid things I did that I would be truthful with them for 2 reasons. 1. I want them to know I've done it and they will not slide it past me. 2. I want them to see that it is ok to make mistakes and that it doesn't mean people can't change and turn out better than they started. Today on the way to take Anna to daycare Carly started telling me about how Kenzie's uncle went to jail over the weekend for drinking a beer out on his boat. I was telling her about how people have to pay the consequences when they break the rules and yadda yadda yadda. I thought we were done with the conversation when she suddenly bursts out with, "Momma, have you ever been to jail?" Um, yeah, I never expected this whole truth thing to come up this early, I was preparing for like say the teenage years, not 5 years old. I told her that I had indeed been to jail for not paying a traffic ticket and then getting pulled over again and they took me to jail. I told her of how I only spent about 3 hours there but that was enough to make me realize I never wanted to go back. She asked if Nana and Pops (my parents) still loved me after that and I assured her that they did even though they were upset with me. So there it was, I was honest...way before I thought I would have to be. I can hear the playground rumors flying already. "Well, my Mommy went to jail..." Great, just what I wanted to be famous for. I just pray she cannot figure out how to pull the mug shot up on the internet!

Carly's Post #2

Carly wanted to change the background and make her own post. Here it is...

i cen not wat until we go to flloridu

love,

silly carcar