Tuesday, September 30, 2008

New skills

The angle I took these pictures from isn't the best, but Alex has started to not only reach out for toys on his tummy, but to reach up for things. In these pictures his hand is at the same level as his face and head. So he is holding his weight on one hand and reaching up with the other.
Go ahead go lay on your tummy, knees flat on the floor, and try this. ITS HARD!
Go strong man go!

Crazy Hair

It is spirit week at Noah's school, and today is crazy hair day!
Thats his hair...You look cool Noah!

Monday, September 29, 2008

nightmares from the table

So things should be going great. We are eating more pureed foods, our skills are progressing nicely, this should be a step forward........

Since he has been eating more food, his poop has gotten thicker, it isn't hard like a "constipated poop", for a nice visual I will say it is like peanut butter consistency, but I'm guessing since he is a bit low toned it is thick enough to make it hard to poop. So suddenly for the first time in a year we are starting to deal with poop issues. Very common with RTS, new to us. What do you do when the poop isn't hard, do you use miralax even though it is soft, or just load them up with prune juice and give him the runs.

So that is our first issue.

Reflux is the next issue, he was doing great for a while, then this weekend he started not only refluxing but throwing up too! Maybe its because he is backed up a little from the lack of pooping. I hate reflux it controls our lives, where we go, when we go, how long we can be there. Sleeping. It controls everything. If Alex didn't reflux, wow, what a dream that would be!

So things were going good for a bit, but like always have gotten tough. Nightmare!

Sunday, September 28, 2008

Tales from the table

Since Wednesday we have been feeding Alex his Peptamin jr formula in his high chair, and spoon feeding at the same time. It has been going really good. I never thought I could feed him sitting up because of his reflux. I was wrong, he has only had two reflux episodes, and they did not result in throwing up. The feeds were lasting an hour, but we have been able to finish them in 35-40 minutes. Which is still a long time for only 3 oz, but it is 60 more minutes of my day that I didn't have before. He is also getting to practice spoon feeding 3

times a day, instead of just once. I have already noticed a great improvement in his skills. Friday night he opened his mouth wide for the first time when offered a bite. Not sure if it was the ham and green beans that he was trying for the first time, or just all the practice. He seems to be hungrier at the table since his tummy is actually getting to empty in between meals.

Feeding Alex is starting to feel closer and closer to normal.

He really enjoyed the ham and green beans, loves sausage, squash, pears, and meatloaf. All pureed of course.

He also practices with a cup, the juice is thickened to honey consistency with simply thick. He doesn't suck on the tip, but he will chew on it, and still get the juice out. He never takes in a lot, but as long as we are maintaining the skill it will work for now.

He likes to hold the spoon, but never tries to feed himself. He doesn't mind getting his hands dirty, but doesn't like to touch Gerber puffs, or Cheerios on the tray. Don't worry Cheri, he isn't eating them, I just wanted to see his pincer grasp.

Noah handed him a crouton and he did hold onto it, and switch it from hand to hand, but never to his mouth.

I cant believe how far he has come!

Here is to big steps forward!

A year ago today Alex had his malrotation of the intestines corrected. (Lads procedure)It was major surgery for him, and he was only a few weeks old. He came through like a champ, and started to get milk in his tummy after the surgery. Goodbye TPN!

Look at him a year later!!!

Since we are sitting in a highchair for a little over 30 minutes at a time, I have been reading books to him in between bites, and working on signs like all done, and more. He smiles so big when we do more, not sure why, but he likes that sign. We always wave bye bye when someone leaves, of course with mommy's help.

He is getting much more one on one, now that I can multitask while feeding in the highchair!

Trying to do it himself.

I know it goes somewhere up here?

I will just use my hands.


Pose for the camera.

Saturday, September 27, 2008

How to find support on this journey with our special child.

I am honored to be a part of the RTS list serv. I feel so connected to these people whom I have never met, but it feels like another family. It is a place where I can ask anything related to RTS, talk about my feelings, and get all sorts of advice about medical issues, communication issues, insurance advice, feeding issues ect......
I have often wondered how many families are out there who have a child with RTS that aren't a part of this list serv because they don't know about it. I was told about it when I met Myssie and Will at a doctors appointment. I'm not sure if I would have found it other wise, although it seems some families stumble across it, so maybe I would have eventually, but I needed it then, and Im so glad I have had this support for most of this journey.
The support I get from my RTS family from the list serv is lifesaving to me. So many issues I wouldn't know about, and so many things I would worry about without it.
So if you are a family touched by RTS and you would like to be a part of this amazing list serv, and family please email me japruitt99@msn.com , and I can send you in the right direction to join. Its free, and everyone is ready to meet you!
I have also wondered about families with other special needs children. Do they have a list serv so they have the support that I have found. While we mothers of special needs do not discriminate, and separate ourselves based on our child's special differences. It is nice to have a support group with similar issues so you can share valuable information, and receive information and support also also. (A way for all of us to stay young!!!)
So I found this website, I don't know if it has every need covered, but there are lots of list servs out there for lots of special families.
Check it out, and find a support group!!!! It is absolutely worth it!

Friday, September 26, 2008

The littlest hero project

Tomorrow Alex is getting his one year picture taken, and to be quite honest his first professional picture taken.
The littlest hero project is a non for profit organization that any photographer can join. They donate their time to take a photo shoot of a special child.

Its a wonderful project. Look one up in your area for your special child! Go to the "our team section" at this link.

Thursday, September 25, 2008

Reversing the damge.......

So I watched this study on PBS last night that talked about how being the mother of a sick child or a child with a disability does wear and tear on your body, end result aging too fast.
They said one stressful year of caring for a sick or disabled child is like 6 years of life. WOW! I aged six years from 2007-2008. That is over half a decade of my life.
This is fair, not only is this going to be forever hard, but I get to get older faster as well. NICE!
I did pull out my first gray hair in the NICU?!?!?!?!
I have to stay healthy and live as long as I can for Alex!
The good news.....
It also said we can reverse the damage done from the stress of our enormous task by reaching out and helping others. Especially others in our same life journey, this act of love, is the most healing literally to our body's.
So from this "special" mom to the next.....Lets stay young and help each other. Even if its only through cyber space!
Love you all!

My friend Connie

I don't remember how I met Connie, I think she contacted me. It doesn't matter, we are friends now, forever! Her sweet Mallorie is having surgery today.
Pray for safety during the surgery,
peace for mom and dad during the surgery
quick recovery,
and returning home asap.

Check out her blog here http://malmalrose.blogspot.com/

Love you girl!

Wednesday, September 24, 2008

Update in this crazy time

Tuesday we were supposed to go to St.Louis for a GU appt. They called 30 min before we were going to leave and said that his GU doctor was in the hospital himself. So we didn't go, and hear the official results of the VCUG, or talk about surgery to bring down his testes. So this appt still looms over my head, but we got the tests out of the way, so that is good.

We are in the process of trying to sell our house.....STRESS, STRESS,STRESS! We have had someone come twice now, really like it, but not make a definite decision.GRRRR. I am trying to keep the house clean, and I'm craving the space we need in a bigger house. However, in the meantime we are saving money which is always good.

Today at ST, and the nutritionist visit we decided to start feeding Alex his bolus feeds in his highchair, I always liked the idea of this so he associated feeling full with the highchair, but assumed he would reflux since he does in his car seat or sitting on the floor after a feed. So this morning we tried it, and no reflux. I am going to gradually speed up the time of the feed with my end goal being a twenty minute feed. He only gets 3 oz, he should be able to tolerate this. Right now it takes 50 minutes to get in 3 oz. I will speed it up every other feed or so, as long as he is tolerating it. Alex still continues to take good bites of his food, and is tolerating everything much better.

He did lose some weight which has not been our regular pattern. We went from 27 pounds to 26 and something oz. If he loses next week, she will want to up his feed amount, which scares me with his reflux. We will see what his weight is next week.

Also...... I have had it on my heart to start some sort of support group for parents of special needs children. Our wonderful church is going to let us meet there, I just have to pick a date, and get some sort of guide or syllabus to follow so it is more than just hanging out. I am so excited about this. I love reaching out to other moms who walk this road, its what I was meant to do. Any ideas on a great name for this group?

I will post more when I know more, this is all I have right now.

That's all, things are crazy right now, but good.

Monday, September 22, 2008


When I was pregnant with Alex we purchased a "pop up" camper. We knew we couldn't raise 3 boys without taking them camping all the time. After Alex was born, no one was in the mood for restless sleep, mosquito bites, and endless hot dogs.
This weekend we were in the mood for some camping, and it was Alex's first camping trip. We were only about 15 minutes away from our house, but it was a great place.
Alex's favorite part was laying on one of the beds in the camper with the other kids. He talked and laughed, he loved it!

Getting the fire started.

Enjoying hot dogs, and smores.

Perfect picture setting, the best pose I could get of all 4 kids. (We took Will and Mae, the kids I watch after school, just for the evening) Alex and I did not sleep in the camper because he still needs to sleep elevated to get his night time feed, so Will and Mae left when we did.

Alex helping daddy pop some popcorn.

Enjoying the campfire.

Had enough!!!!

Friday, September 19, 2008

Im dreaming new dreams

So I have had people asking me how I am doing lately. I haven't posted too much on how I have been because we have been so busy, and things have been really good. Funny, I don't feel like writing down my thoughts when I am doing well.
Things have gotten easier. Alex doesn't throw up everyday, he sleeps well, he is progressing nicely. Its not so hard seeing other babies his age, of course it reminds me of where we aren't at, but it doesn't send a sharp pain into my stomach every time I see a baby crawl by, or watch a baby shove a hand full of crackers in his mouth. I notice, but it doesn't hurt, I just notice. I look at Alex and I know how far he has come, I wish everyone knew all he has accomplished in his short little life, then they would see what he is doing, instead of not doing.
I do still have moments of feeling so completely overwhelmed, not of the present struggles so much, but the future. This will always be in front of me. I have to stay healthy. How in the world can I do this for the rest of my life? Those moments are fleeting, and come less often.
I catch myself watching others with typical children, and still feeling so separated from them, like we live on two separate planets. Then again, I hold tight to the lessons I have learned of what really is important. The other night at Noah's baseball game this mom was getting so angry at her son a 6 or 7 year old because he wouldn't hustle, or be ready on the base, she even told him to plow over any kids in the baseline.She was screaming at him, threatening him. I thought to myself she hasn't had tragedy in her life. To be able to stress, and be obnoxious over a little boys baseball game is beyond me, and I'm glad I'm not there. I also catch myself wishing for the lazy days of the past, things were so easy, sadly I had no idea how easy they were. So of course now I long for those days, those longings are also coming less often.
Sometimes, shh this is a secret. Sometimes I'm even excited, honored, blessed by the fact that I get to raise this special child, I get to witness the joy, and change he brings to others. Oh what others are missing out on. I get to do this. I get to see Alex accomplish, and be changed by him.
So, how am I?
I'm good, I'm thrilled, I'm scared, I'm worried, I'm full of joy, I'm hopeful, I'm sad, I'm still adjusting, I'm settled, I'm at peace, I'm messing up, I'm doing my best, I'm glad to be here, I'm afraid of this, I'm finding my purpose, I'm dreaming new dreams.

Support families BLESSED by RTS

We raised 25.00 in honor of Alex at his birthday party. Thank you to everyone who gave.

The Special Friends Foundation is here to help families blessed by RTS. They help with medical expenses that can not be paid for any other way.
Like most families with special needs we all run into trouble at some point. The doctor says you need this to help your child, insurance wont cover it, many don't qualify for medicaid. How can you give your child the best to help them reach their highest potential if you cant afford to help them.
Special Friends is here for RTS families, and helps them pay for things like augmentative communication devices, orthopedic equipment, or feeding costs for tube fed children just to name a few.

Click here to give in honor of Alex and all his beautiful friends!http://www.firstgiving.com/26forrts

Thursday, September 18, 2008

Wonderful news

We got a call that the VCUG study showed no sign of reflux into his right kidney. The urologist has not read it yet because he is out of town, but the radiologist has read it and saw no reflux. This means no more daily antibiotic, no major surgery to fix it, and no high risk of UTI, or kidney infections!!!!!!!! This is awesome!

His hip and pelvis x-ray was also normal!
The VCUG study will be confirmed next Tuesday when we see the urologist, but we are pretty confidant in the news.
I know I already posted this picture of Alex after his VCUG on Tuesday, but I cant get enough of that face and the gown.

Wednesday, September 17, 2008

Teething Bites!

Tooth number 9 has come!

The real deal in real time

We were sitting at the dinner table eating chili, and I gave Alex a dinner roll, just to see what he would do with real food (meaning non pureed). Would he pick it up, would he put it in his mouth. I Knew he wouldn't bite off pieces, we just aren't there yet, nor would we be safe to be biting off pieces. So here is the story in real time....

Thanks mom.

A new chew toy.

Its squishy????

I'm not sure if I should put it in my mouth?

everyone else is.

it smells good.

It feels funny.

It doesn't taste like my chewy.

This isn't my chewy.

No thanks mom.