Friday, January 30, 2009

bloggin with bird......

Hi, I know you have all been awaiting hearing from me...Here I am!


Look at me Cheri! Remember that boy who couldnt swallow, and gagged when you touched his cheek?


Trying to pull up on everything.....




Love my pink phone skin!



Great news!
Daddy brought his lap top home so I can kick it in my crib, get my water, and blog at you all.

Its been a great week, I have really taken to this eating thing, I don't know what I was waiting for, I can down an ounce of food in 10 minutes, and it used to take me 40. I like to hold bananas and take bites from them. I love eating! Don't know why momma calls me bird, I'm really becoming more of a monkey.

I have the sniffles, big Noah and big Joel, brought them home from school but its all good I can handle my secretions!

My favorite thing in the whole world besides mommas mouth is mommas phone skin, I put it in my mouth and just go about my business, it meets some serious sensory issues goin on up in here! LOVE IT!

I'm trying to pull up to anything and everything, I can get up on my knees, and I'm trying real hard to stand. Ill get it, I'm so sure I will.


Hold on I have to press my aquarium toy, its hard to type with little light in here.
OK, I'm back.

Momma has been really tired lately, that little brother or sister of mine is taking her down. Sometimes she makes this really icky sound like I do whenever I reflux and my milk comes back up, not sure what that is about, but I wish she would stop. Speaking of my reflux, I havent thrown up in almost 2 weeks, when momma and daddy used to feed me they would have towels ready and near to try and catch my throw ups, now i don't think they even think about it anymore. I am taking some serious steps forward here people! Eating, moving, not throwing up, whats the problem?

I guess I have given you all the updates on me, I do have two big brothers you know. Noah dint strike out once at his baseball game tonight! He is really getting good at it, and dont worry it was indoors. Joel loves his swimming and was excited when he beat the other kid in his swim lessons yesterday. Noah has chosen to do the planets and space class in Saturday scholars this spring, and momma is helping Joel prepare for kindergarten next fall.

A for sale sign has gone up in our yard, we have got to get some more room up in this family. We need one more bedroom and a place designated for toys only. This move needs to happen asap, can you imagine 6 people living in this house? Oh, I guess most of you don't know where we live, but I'm here to say this house wasn't made for anymore than we got, plus momma watches two extra kids after school, so if anyone wants to buy our house just email momma!

I could go on, especially since I have all night, since I am getting my water and all, but I really need my rest to get over this cold, so I gotta go.
I love my peeps! Be back in a week for more bloggin with bird!

Thursday, January 29, 2009

Nothing in return.


Most moms don't realize the simple reactions they get from their kids, sure they see the cute ones, or the bad ones, but to every action we give our kids, they have a reaction, most of these go un noticed. That is until you have a child who doesn't smile, or doesn't talk, or doesn't react at all. Caring for a child who gives nothing back, no hugs, no thank yous, not even eye contact is one of the hardest things for a parent to endure. We don't realize how much we enjoy these small reactions, these precious bits of communication most mothers aren't denied.

I notice every little reaction Alex gives to me, he smiles, he laughs, and then sometimes he wont look me in the eye, sometimes he shakes his head from side to side, and I don't get a reaction. I'm so grateful for the reactions I get, I'm so thankful that Alex will continue to progress, slow as it may be, he will continue to move forward, and I am so grateful for this. I will continue to notice, and be blessed by every little reaction I get.......Start to notice your little ones reactions, be thankful, and my goodness don't ever complain about your healthy kids!



All day I took care of you, I got you up and dressed, sat you in your chair, and helped you look your best. I gave your medication, brushed your soft hair, tried to make you smile, even though you seem unaware.

All day, I take the time to care for you, without a smile back. No thanks mom, or even a hug, these are all things that we lack.

I took the time to lift you, so you can see new things, sing songs, read you books hoping that it brings a sparkle to your eye, a crack in your smile, they say it may never come or it may take a long, long while.

Some think your life is worthless because you don't walk or talk. I know what you continue to give with the love your simple presence has brought.

You give each day purpose, even though each day is the same. I love you my precious child and that will never change. -Jessica Pruitt 2009


Tuesday, January 27, 2009

Oral aversions, oral hygeine, and a little bed head...

When Alex came home from the NICU, he would gag when his cheek was touched. Getting anything into his mouth besides the bottle and his "b" was just not happening. Then after his aspiration pneumonia in November 2007, he lost the bottle, I was so scared of losing any oral skill that I gave him his"b" when he would be tube fed, but around 7 months he gave up his "b" as well. I was sure that we were going to lose all oral skills, and desires. Alex did tolerate a spoon, but he never really liked it, and still gagged when certain things touched his cheek. Now of course he wants the spoon, phew.....Check! However, hes got about 15+ teeth in his mouth, and for the longest time I have been brushing them with a washcloth wrapped around my finger. He hated any sort of brush near his face. I was shopping a while ago, and there were these mechanical toothbrushes on sale for like 3 dollars. Since Alex loves his vibrating star toy, I wondered if he would like the feeling of the mechanical brush, with him in control of course............and he surprised me. sometimes with no hands! This boy has got some skills!

and sometimes he made his classic aversion face........

and yes, he preferred the side without the brush.....(he likes to bang things on his top teeth)



but he has made it a long way!






Monday, January 26, 2009

Bella

A sweet RTS friend has passed on. Her name was Bella, you can meet her by going to Frankies blog. Frankie had the honor of hanging out with his RTS friend many times. Today she is resting.
Thinking of you Monica (momma). You and Bella made it through so much. You are truly on my heart today.
Bella was to turn 2 in February.
Be thankful today, in Bella's honor.

In memory of Bella Reign Guerra February 16, 2007 - January 25, 2009

short femurs, anxiety attacks, and passing out on ultrasound tables.

I cant do this again.......
Well, I see that my little bird got onto the computer again. He's done it before, but I usually catch him before he can spill any of our family habits and secrets to the whole world. Ive just been so tired lately that I didn't hear him get out of his crib this time..............................




Yes, its true, we are going to have another baby, and I'm in sure denial.


I just cant believe it.


Is it true, maybe not, maybe the two tests were wrong.


4 kids, can I do it? Can I tube feed, and nurse a new born.


Will I get to nurse a new born, or will I be staring at it through the plastic of a incubator.


I don't think I can stand to go to the ultrasound, maybe I can stay home for that.


I'm sure that I will anxiety attack, and pass out on the table, and Ive never had an anxiety attack before.


So, those are my thoughts, I cant believe it, I know too much about short femurs, the chambers of hearts, spinal issues, fat pads (on the top of the back), clinched fists, will the intestines make into the right place, will they make it in? (phew)..........




I want to be excited. I'm just scared to be. I want to be ignorant and pregnant again, you know when all the ultrasound means is finding out what you are having, and seeing how far along you are. I didn't know they were measuring bones, and fluids, and counting chambers, and making sure organs are all intact and inside. Now I know.........




In other news, Alex is eating better than he ever has! He is leaning in for all bites, taking in about an ounce of solid food each feed. His favorite things are mashed potatoes, carrots, sausage, and pears. He can even handle chunks of pears mixed in with the sauce, chunks about the size of half a dime, and no gagging. He is taking bits of gerber cookies, and chewing them up, again, no gagging! He seems to enjoy it, and want it! I guess Alex is taking on the roll of big brother serious!

Friday, January 23, 2009

From Bird

What up? Bird here.......
I snuck out of my crib when everyone was fast asleep, which is a big deal for me cause I had to unhook from my pump, clamp my tube, and put the pump on hold as not to waist my precious water that I get at night. I have something really important to tell you all, and it just couldn't wait. I heard momma say that she wanted to wait until everything was official, and safe. Not sure what she meant by that. I'm really proud here though, and since this blog is about me I don't think momma will mind if I go ahead and share. Something funny happened earlier this week though, and since I know momma wont ever tell anyone I will. I threw up, and some of it got on my space heater, momma didn't know she just cleaned up the floor, and my throw up burned onto the heater. Isn't that funny! Momma might not appreciate that I told you all that, but every time I see that dark stain on the heater, I laugh inside. Its getting late, and it will take me a while to hook up after I climb back into my crib, so I better just spill it.........
I'm going to be a big brother. I heard momma say that this little brother or sister of mine was the first unplanned baby in the family, she likes to plan. She thinks she is in charge when she plans things and they work out, but this time she was surprised! I think I heard momma say that this baby will be born around my birthday in September, but she wont see the doctor until February 4th for a better due date. I think momma is a little scared, I even heard big Noah say he hoped that this baby wouldn't be in the hospital as long as I was. It didn't make me sad, I worried a lot of people and I know everyone missed me and momma a lot. I know Momma saw a lot in the NICU, and the thought of not getting to hold the baby after its born scares her a lot. I hated that part too, I just wanted momma to hold me, but I couldn't breathe either, so that wasn't good. I knew momma was near, and she read me stories into a tape player so they could play over and over again, maybe that's why I love books so much now, anyway, I'm not worried, I know everything is going to be fine, I hope momma doesn't worry too much. I can tell she worries sometimes, I just smile, or stick my hand in her mouth to let her know it will be ok, she gets it.
better go, I think they are on to me..............Love bird
p.s I like this bloggin thing, maybe I can make it a Friday thing, thats a great idea! Im so smart.
Be back in a week dog!




Thursday, January 22, 2009

Now thats just cute!

I got out a toy that has been sitting in Alex's closet since he turned 1. It may appear as though he is pushing himself around, but I pushed him, and he loved it! He did give himself a few pushes forward, but didn't make attempts to really go anywhere. I think we found something new to do when we play. Alex is getting stronger and stronger every day with his crawling skills, the Pt said he is creeping, he can creep about 12 inches now. He pulls up constantly in his bed, good for him, bad for sleep. He is also doing really well with eating, and for Alex that means moving his face forward for bites, occasionally opening his mouth for them, and most of the time not turning his head away from the spoon. He is now eating about 2 and a half ounces of food a day. So we are moving forward.
Mmm Mmmm Mmmmmmm! You are so cute Alex!






Tuesday, January 20, 2009

A year ago

A year ago today I decided to share my blog. I had been writing for some time, but didn't share the site with anyone. I wasn't ready to admit that I had a child that was differently abled, I wasn't ready to hear the "I'm sorrys", and the "I'm praying for you". I just wanted congratulations, and the things that are supposed to come along with a new baby. A year ago today, I shared Alex with the world.



Look how far we have come!
From nothing by mouth to loving potatoes and carrots. From barely being able to lift his head even an inch from the floor to almost crawling.
I love you Alex, the world loves you!!

Monday, January 19, 2009

Im here, Im here!

So I started throwing up at 2 in the morning Sunday, at first every two hours, then every hour. I threw up 6 times in 8 hours. I had a fever, and I was cold, then hot. It was horrible, but this morning I'm feeling better. So sorry for the late post. I know how I count on so many of your posts Monday mornings!
After reading many of your comments on the last post I fear I may have mislead some people to think that Alex is crawling. While I wold love to go along with this and say he is. He isn't. He gets into the crawling position from sitting and "walks" his hands as far as he can until his belly is flat on the floor to reach his object. If someone is behind him and moves his legs for him like he would if he were crawling then he gets much further. I do believe that he will be crawling soon. When he does there will be massive parties, video, and possibly an add in the New York Times. In the meantime Alex love to play with pillows, he hugs them, pats them, and puts them in his mouth and shakes his head like a puppy.

recovering

Came down with a something fierce tummy bug this weekend. Fever, and all. I promise to have a post later!

Friday, January 16, 2009

Go Alex, GO!

The first set of pictures was taken today, you can see how much more confident Alex has become in just one day. The second set of pictures was taken on Wednesday. Alex would lean forward, putting his hands on the floor, and reach out for a desired object, then on Thursday, he started to get on his hands and knees, and take "steps" with his hands forward to get closer to the object. He isn't bringing his knees forward, so when he gets as close to the object as he can by "walking" his arms forward he the is on his tummy, but sits back up with the object. What motivates this little man? Lights, music, expensive toys???? No, a feeding syringe, a perfume box, and my iPhone. These are the things that have gotten the boy to move. Crawling in the near future???? Funny thing is he hasn't had therapy with a therapist or me since last Thursday since he has been sick. On their own time.........





















Thursday, January 15, 2009

Mommas little angel







Alex has not had a fever since Monday, he was very congested Monday, Tuesday, but today not much at all. He is back to throwing up about one feed a day. It is so frustrating to sit there and tube feed for an hour 10 minutes, and it all to come right back out when you feel relieved that you are done. This is the absolute worst part of this syndrome thing for me, the feeding/digestive issues. His feedings take 70 minutes, three times a day of my life, and then when it all comes out onto the floor, well, I might pull my hair out very, very soon. The good thing is that Alex is on the mend, he is sleeping without Motrin, or Benadryl. He is also happy to play on the floor again without his fingers in my mouth.






I have some new information on some new motor skills, but that comes with pictures and Im too tired to sit here and upload them, so you must wait.

Tuesday, January 13, 2009

I want my baby back, baby back, baby back, baby back.....

I know most of you remember that I firmly believe in no sickness if there is a syndrome. I think its only fair......I want my baby back. Until then, here are some pictures of happy Alex.



























Monday, January 12, 2009

I should have knocked on wood

UPDATE!!!!
So it looks as though this is viral, this morning the congestion set in, and for a virus it is typical for a fever to run high then the "cold" symptoms to come in a few days later. The doctor said that since his right ear doesn't look perfect he will keep Alex on the antibiotics, but it is probably viral. This morning besides waking up crying and early Alex has been pretty normal, but again he is on Motrin, it wears off at 2:00 we will see how things are then. If Alex is still running a fever on Wednesday we go back to the doctor. Thanks for your prayers, and thinking of bird. I feel like I am doing so good with all this you know "syndrome stuff", then when I cant make him better or wonder what is about to happen to upset our lives once more I really start to feel overwhelmed, and wish for that old typical life that was so much easier, but then we wouldn't all have bird now would we.
So much for that up swing I was soooo happy about. We are low, infact maybe we have even fallen off the swing all together.

Alex's fever reached 103.2 on Saturday, he woke up with 101 on Sunday. He had his ears looked at on Saturday night but had been crying so of course they were red. We started him on antibiotic Sunday morning. Fever again Sunday night and very fussy.

I don't think my mouth can take anymore fingers in it. If I have him, his fingers are in my mouth. He has been almost unable to calm at times. I hate to think we are giving him antibiotic for something viral, but after 2 days of high fever, I got scared and wanted to try.

Tomorrow morning I'm calling his doctor to get him in asap......I hope its ears, or a virus, something that will run its course. When he's crying and I see his little ribs when he takes a breath I wonder, is he pulling when he breathes, does he sound hoarse from all the crying or is it strider. He does have calm moments, about an hour after the Motrin kicks in, so I wouldn't think pneumonia with these calm times. I do know its possible.

Friday, January 9, 2009

Update

(Alex with fever asleep with his hand in my mouth)


We saw the doctor and he said a late July surgery would be fine. This was the best time in my mind, due to some vacations planned and it feels so far away, I have time to get used to the idea of yet another surgery. He said if all went well we would go home the same day. I will have an official date when the secretary calls me later next week.

The PDA is still there, and we are waiting to hear from the cardiologist to see if he will want to watch it for another year, or close it. So another surgery pending, and this one is on his heart. It is a very standard and easy procedure, but it is my boys heart we are talking about.

So I guess we are just waiting for dates, and decisions.

When we got home from the appointments Alex came down with a 102.0 fever. I guess we only stayed on the up swing for a short time. Although still no throw up, and the poop is regular, so i wont complain. Poor baby had a long day.

Just me and "bird"


Just me and "bird" driving to Saint Louis. Urology at 10:00, and echo cardiogram at 11:30, maybe a short NICU visit, if things are flowing well.

Concerns with urology are:


being able to bring both testes down, if one is attached to an organ like the kidney it is very possible it would just be removed.

Because he has already had abdominal surgery (malrotation of intestines) the scar tissue could interfere with how they go about performing the surgery.


Concerns with echo:
PDA is bigger or is causing heart complications.....Unlikely. I will let you know how it all went tonight.
p.s. We have taken our tree down, this was the most recent picture of Alex and I, I thought it went well with the title....(Noah took the picture)

Thursday, January 8, 2009

The up swing


We are in one, everyone is healthy, sleeping, no reflux.

Alex hasn't thrown up in 11 days! While he still managed to lose weight at his weigh in with the nutritionist yesterday, his head and length still grew. He is still getting all his Peptamin formula during the day, and just water at night which means no gagging and throwing up in bed. For others controlled by cc's and that care, Alex is getting 195 cc's 3 times a day of Peptamin, and 570 cc's of water at night. He also gets 3 oz of apple juice first thing in the morning with his a.m prevacid tablet. He is well hydrated, and with this comes poop, and he has been pooping everyday, as of late. He used to be a regular every 3rd day pooper, but lately its been everyday. Who cares about poop some of you might ask, in fact some might complain at the amount their child poops, but not this mom, with a child who has great potential to be constipated, effecting reflux, effecting appetite, and a whole lot of other things, this mom cheers for joy at the smell of a poopy diaper!

Alex is getting another tooth, but his sleep hasn't been effected by it like it was October-December. Those were a dark few months, and I feared maybe it wasn't teething, maybe this was just how it was going to be, but sleep once again came, and the horns with steam flowing out of them during the day, have gone back down into my head. Yes, its true, I aint so sweet without sleep.

Friday we go to Saint Louis for Urology, this will be when the Doctor confirms the report I have already seen that says his phase two kidney reflux is gone, and we discuss the surgery to bring down his testes. He will also have an echo cardiogram to check on the PDA, that no one is worried about.

I am hoping for a late spring and or late summer surgery.


Why the picture of Alex's pj's and tubing you ask....This is how we tape his tube to his pj's so if the tube gets pulled, it pulls on the loop, not the stoma. We also tape the tube connected to Alex and the tube from the bag together so they don't pull apart. Oh yes, and we also tape the medicine port shut so it doesn't open up, this happened once, and all his water went onto his bed instead of in him. With the loop where it is at, we are still able to zip up his pj's, so he stays warm. He is sure glad that reflux harness is in his dresser and not strapped around him anymore!


So we are in an up swing, and yes, being on the up swing for me means poop, no vomit, no sickness, and sleep. I'm so grateful, does it have to swing the other way now????