Thursday, July 31, 2008

TLC

Alex was a much happier baby today, after his vomit early this morning he slept in until 10:30, he was quiet, but happy , then he took a three hour nap! He woke up himself, he still had a fever this afternoon of 101, but tonight it was only 100.9, and he was laughing at Noah. I suctioned lots of snot before he went to bed, and he sang himself to sleep instead of screaming. Hopefully things will continue to improve. Nothing like a little TLC, and cancelled therapy appointments to make you feel a little better!I will let you all know how the night went.

Update on Alex

Alex's congestion has gotten worse, and turned yellow. He had a fever all morning of 101.1, I gave him Motrin and he is asleep. He has been slightly happier, although I have had him watching baby Einstein all morning to help distract during his feeding, and after to help keep his milk down. I have been very successful at keeping him hydrated, so as of now, that isn't an issue. I talked to Adam this morning and he says his throat feels a little scratchy, so right now I'm thinking Alex has a cold of some sort. I did give Alex a breathing treatment this morning, he wasn't wheezing, but he coughed a few times, and that was all I could handle before I broke out the albuterol.
I plan on taking him to the doctor tomorrow unless there is a huge improvement since it is Friday.

Summer part 3

The middle of summer was filled with TONS of baseball games.


Lots of playing in the water.


















We made it to the zoo, and even to six flags. It's been busy, and now we are going to relax and enjoy these last few weeks before the new school year, and sports season kicks in.





Another rough night

Alex didn't sleep well again, it was better than the night before, but that is only because of the benadryl, it made it easier to go back to sleep. He threw up this morning around 4:40, and had a temp of 100.6. I will know for sure on the urine this after noon, he is still very congested, but still no coughing or wheezing.

Wednesday, July 30, 2008

He has never acted like this!


Wow, something is seriously wrong, I have never seen Alex this upset before. His urine wont be completely done until 24 hours, but so far it looks good, and they don't suspect anything will grow. There was a little blood in it, but they think it was from the catheter when they took the urine. I know something is hurting Alex, he will be perfectly fine, and then all of the sudden scream, and cry. He is congested in his nose, and sneezes quite often.

I just laid him down with Motrin and benadryl to help him sleep, and to help clear up some of the congestion. I'm not very hopeful for a great night.

I will be honest and say I'm a little scared, I know something is wrong, but so far we cant figure out what it is. My mind races at all the things associated with RTS that it could be, or just narrow it down to the many things that it could be that Alex has issues with. I cant help him if I don't know where to start.

doctor visit

Ears look good, lungs sound good, now we are waiting on a urine culture. Alex has phase two reflux into his right kidney, so we need to rule out any infections in the urine. We will know more this evening. If the urine is clean, then we watch his fever, if it is present on Friday then Alex will have a chest x-ray. I will keep everyone posted. He sure is grumpy, and cries at anything and everything.

You can give and support families with RTS!!!!!

http://www.firstgiving.com/26forRTS



I have never met Terri in person, but through her words I know she is strong, wise, and a great mom. I have never heard a discouraging word come out of her mouth, I hope to be the kind of mother and advocate that she is to her daughter for Alex, and her daughter Addie is proof that our RTS children can thrive, and live wonderful lives without missing out on a thing. Addie's daddy is running in a marathon in October, and YOU can support RTS through his 26 mile run. Click on the site above to learn more.

Thank you in advance for your support, even with a dollar you are supporting RTS families, and without these families support Alex and I would not be doing as well as we are. These other families are vital in my day, every day. I can reach out to anyone of them, and in an instant they are there with answers, advice, but mostly a "I know, I have been there" is all I need to hear.
Also, without the support of so many of you around the world, I would not be as encouraged as I am every single day. Your comments are so important to me, and I know so many more of you check in on Alex as a part of your daily routine. It means SO MUCH, I wish I could meet you all and thank you, I am forever grateful of your love for my Alex.



Thanks again,
Jessica and Alex

Alex is sick

Alex has a fever this morning 101. He had a terrible night, probably the worst night he has ever had excluding being re intubated in the NICU. Up once every hour, crying, refluxing, and finally throwing up at 6:00 this morning. The throwing up was reflux related, I dont believe it is any type of stomach bug. I'm hopeful that it is just his ears, and nothing related to aspiration. Aspiration sickness would be the worst possible thing, but we really will never no if it is viral, bacterial or aspiration. Even an ear infection could be reflux related. We will see what the doctor says today at 1:00.

Tuesday, July 29, 2008

A little tired.




Alex is teething again, and this time it is BAD! Can't sleep without Motrin, and still a little restless, and as soon as 8 hours is over he is awake, and mad. Normally he sleeps 10 hours without a peep. Naps are even worse, I just give him Tylenol during the day, but it doesn't seem to do the trick, and as you can see he is tired. I am taking him to see his doctor tomorrow to rule out an ear infection just because his ears havent been looked at in a while. I know he is teething because I can see it about to break through, it will just ease my mind to rule out the ears.

Sunday, July 27, 2008

Look who is standing!!!







What a big boy I have! I can see so many little changes are happening fast. Alex can stay up on his knees, in the crawl position for a few minutes now, he still prefers to just push up on his arms, and leaves his legs flat, but when I put him up on his knees, he is strong enough to stay that way. Now, he can stand too!!!! Our biggest physical challenge right now besides getting him to crawl is getting his hips to rotate around. When babies are born they have "frog legs", when Alex lies on his back he still lets his knees fall out to the sides, like a frog, and we have to rotate those hips to the front more so he can crawl and walk. He is making improvements, and I see a difference in just a few days HARD work!



Friday, July 25, 2008

Retarded

The word no one likes, the word no mother or father wants to hear when a doctor is talking about their child. The word most people use when talking about something they dislike, or when referring to someone they see as less of a person. The word children are allowed to use in their daily vocabulary when talking about someone or even something they don't like. No one likes this word, no one wants to be called retarded. People hate the word retarded.
Here is the definition of the word.
"Mental retardation is a generalized, or triarchic, disorder, characterized by subaverage cognitive functioning and deficits in two or more adaptive behaviors with onset before the age of 18. Once focused almost entirely on cognition, the definition now includes both a component relating to mental functioning and one relating to the individual's functional skills in their environment."
So many people use the word retarded as slang.
To some of us it is personal, to some of us it is our children, our precious babies whom we love as much as any mother loves her precious child.
For some of us retarded is a word that involves our every day lives.
There isn't a joke involved, and there is no hate.
For some of us retarded brings us more love that we wouldn't have had the privilege of knowing otherwise.
This horrifying word to most people has made some of us stronger, better, and given us deeper lives. We all remember the first time the doctor used that word when talking about our child, maybe it was straight from their mouth, or in a medical report. We remember the day, the moment, but that child is the same child we fell in love with in our womb.
The word retarded hasnt changed our love, in fact its made it bigger, and made us better.
Next time you want to use or hear someone use the word retarded in a derogatory way, remember those of us who have been forever changed, and be changed too.
Remember those perfectly different people who see the world through the eyes of precious innocence.
Thanks, being changed daily......Jessica Pruitt

Wednesday, July 23, 2008

I need your help!


As some of you know we recently put Alex on a feeding pump at night, he gets over half of his feeds at night, which has greatly decrease his vomiting, and given me more time during the day to be mom, not a bolus girl:)

Currently Alex sleeps in his crib which is elevated quite a lot, he came home from the NICU sleeping on his tummy, elevated in a "Tucker sling" or a reflux harness, this keeps him from rolling to the bottom of the crib. He is outgrowing the harness, and tries so hard to roll over, and move around in his crib now. So very soon we are going to lower his crib, and say bye bye to the harness. My worry is that he wont be able to tolerate the feed at night (acid reflux), and how do I keep the tubes connected with all the rolling and moving????? Right now he is unable to move around so the feeds have been going very smoothly.

Alex gets 550 cc's of milk in a 8 hour period, that's about 67 cc's per hour, ( we have it set at 60 cc's an hour, but it only takes 8 hours to finish so clearly our pump is faster than it should be).


What I would like to know from you is:

How do you keep your tubes from disconnecting?

What is your feed rate, and what amount are you feeding?

If your child sleeps flat do you have extra reflux issues?

NOTE: I realize all our children are different in what they can and cant tolerate, I just want a basic idea of what other kids are doing and tolerating. If you dont have a blogger account email me!!! japruitt99@msn.com

Thank you so much in advance!!!!!

Monday, July 21, 2008

We went to the zoo, and.............

Got to hang out with Will, his mommy, and sister Caroline, and Max, his parents, and sister Ava. (Their blogs are on the right of mine Will's is titled "Lilo and the Stitch", and Max's is "The Foley four". Will and his family met Max and his family at the RTS Midwest reunion back in March, and had this trip planned, and it just so happened that we had a doctor appointment on the same day everyone would be in St.Louis. It was absolutely wonderful to see Myssie, and Kelly, and their children. I'm dreaming of a day when all of us RTS moms can get together, on a beach, without the kids......... Oh its gonna happen!
St.Louis was under a heat advisory......IT WAS HOT, and HUMID, but worth it.

Alex and mommy on the carosel, he rode it last year in my tummy:) there is Joel in the back:)

3 brothers, and 3 sisters.

Will grabbed Alex's hand, and Max grabbed his hair! I love it:)




Hurry up and take the picture, its HOT!!!!




SOOOO HOT!





Will and his cow:)






Early morning for us all.






Looking at fish with mommy









The doctor appointment was easy, and fast. He wants us back in a year to do x-rays, and then we will probably wait another year before any surgery. So Alex will probably be three before we do anything. I am going to get the advice of the other moms whos children have had this surgery done on the RTS list serv, because they always know more than the doctors. This is probably the plan, and right now I'm ok with it. I really didn't want a surgery in the near future giving us anymore physical delay since Alex would have about a month recovery, one hand at a time.

Tight fit








I accidentally picked out a shirt that was size 12mo, its too small. Alex wears 18-24 mo, I put it on him anyway, because I had already washed it (thinking it was the right size), and got a picture of him in it to say he wore it.



Today Alex has an appointment in St.Louis with ortho, to discuss his thumbs and our plans. Both of his thumbs are severely angulated, and there is a surgery to correct them,but the recovery is long. The suggested time to fix them is before they turn two, so we need to make a decision soon. Addie (click on her name to read her blog)had both her thumbs straightened and they had a good experience, and are glad they made the decision to go ahead with the surgery.


I would love to find a doctor who has actually done the exact surgery, and we would be willing to travel to have it done. We will see what the day brings..........






we also have something very exciting happening this morning, but you will have to wait and find out!!!!!!

Friday, July 18, 2008

Plans

I am a planner, I make lists, and I like to make perfect little check marks when I have completed a task. For most of my life I have made plans, and checked each one of my "life list". College...check, marriage...check, empty nest syndrome and live the golden life???????
Being the mother to a special needs child, I realize that I cant plan more than the day we are in, unless of course we are talking doctor appointments, those are scheduled months in advance. We see the eye doctor in March 2009, so I still get a little satisfaction in future plans. HA!
I am coming to realize though that planning for my future isn't as carefree as it once was. Most special needs children stay with their parents as long as their parents are able to care for them. So what does that mean? Can Adam and I live the retired golden life someday, come and go as we please, the beach all winter long, boat rides on the weekends, or is everything set in stone for us....Eye doctor in March, PT on Tuesday, ST on Wednesday...ect...ect..
I am learning to live one day at a time, and leave the list making for the groceries.

Thursday, July 17, 2008

To gag or not to gag......That is the question

Alex had speech therapy yesterday, and Cheri gave Alex a new toy. She also was excited to hear that Alex is gagging?!?!?!?!!? The more he gags now the less he gags later because his gag reflex will grow to be more tolerant of things like fingers and toys. So my job is to gag him, well, at least not to freak out when he gags on something, and to be glad when he sticks something into his mouth and doesn't gag! We are also going to try a new flavor of juice, to make the bottle a bit more enticing, and make his mandatory chicken more flavorful.
Thanks for the new toy Cheri, we love you!








Wednesday, July 16, 2008

Playtime...More firsts

Alex is strong enough now to play with things sitting up, before he had to be on his back to be able to hold something, and get it to his mouth. Now he can sit up, and manipulate his toys! He was very determined to play with these toys. His favorite remains his happy apple (which is very heavy to lift), but I think this star stacker is coming up fast as one of his favorites.






















































Tuesday, July 15, 2008

VULNERABILITY

A dear friend lended me a book, and in the book it talks about vulnerability. It comes from a Latin verb that means "to wound" to be vulnerable means to be open about the most painful, and personal pieces of our lives. The dictionary says vulnerability means "capable of being physically wounded", I suppose like a baby animal is vulnerable out of its den. For those that are hurting we could potentially get hurt, by being honest.

For me, coming out of "my den", would be admitting that seeing babies born in 2007-2008 is really, really hard. It physically hurts. Its not that I'm not happy for the family of this healthy bundle of joy, its just seeing everything I wanted to have, its noticing how the baby sits, eats,crawls, holds a toy, talks. Its knowing how a simple trip to the store is just that, a simple trip. No worrying about tube feedings, about vomit, reflux, and aspiration. Not scheduling your life around therapy appointments, and doctor visits, its being able to only complain about ear infections and teething. Its what I want.
Don't get me wrong, I wouldn't trade Alex for any other baby, NOT A CHANCE, but do I want him to be typical? Of course! I also firmly believe that Alex is not a syndrome, but the syndrome is there, and its effects are present. Would I choose a difficult rode for my family, of course not! I know that Alex is going to shape our lives into better beings, than we would have been otherwise, I know that he is going to teach others about love, and kindness, I am so blessed that he will make Noah and Joel better men because he is their brother.
As another RTS mom said "they will always have a pure heart". What a gift, to not be changed by this world, to always have a pure heart.
If I could press a magic button and make the syndrome go away, I still would. With all the good that has and will come, I still don't want there to be a syndrome, but there is. I could hide in my den forever, its safe, and comfortable, I like it.
These other children who were born with Alex will always be there, and I can let it taunt, and haunt me, or I can focus on the blessings in front of me.....my Noah, my Joel, my Alex. My boys!

That is me being vulnerable.

Sunday, July 13, 2008

On the move.....




























Well, not really, but he is rolling around a lot. He rolled from his tummy to back in April. We couldn't get him interested in anything enough to roll from his back to his tummy, but last night he did, I of course thought he must have been laying on a toy or something, and it helped him flop over to his tummy, cant give him any credit, he has a syndrome and all (why do I do that????). Then this morning I put him under his gym to play, and left the room, when I came back in he was on his tummy!!!!

I almost didn't want to post about this, I mean who gets excited about there 10 month old rolling over to his tummy, BUT I AM EXCITED!!!!! He is on the move, and I'm so proud of him, and I know so many of you who pray for him, and check in on him, and have a little sweetie at home who takes their time with milestones are excited too.
Thanks for all your encouraging words, I'm feeling better:)

Friday, July 11, 2008

More throw up.


This morning Alex threw up after the first half of his 9:00 feed. It was a bad throw up too, retching, gagging, crying, screaming, then it was over, and he was happy, this picture was taken minutes after he threw up. Today Alex had his developmental therapy, this is the therapy that used to be once a month, but was moved to once a week after his 6 month IFSP meeting.

Today I'm a bit weary....How long will I be tube feeding? How long until the therapy shows some big payoffs? When will this new normal feel normal? I'm just tired of all this.

Wednesday, July 9, 2008

More pictures of summer




























At our last doctor appointment in St.Louis back in June we brought Noah and Joel because school was out. So their aunt Michele, and grandma (Adams sister, and mom) met us at Cardinal Glennon, and took the boys, and their cousin Meredith to the St. Louis zoo. They had a lot of fun, I'm glad that they were able to go, we go to the zoo every year, but I wasn't sure if we would get it done this year because I don't like to go anywhere if I don't have to with Alex, tube feeding is hard enough at home, and then throw in vomit, and I prefer to be at home.Not to mention we have an appointment Mon, Wed, Thurs, and Fridays so if I can be at home with no where to go I prefer it. His feeds continue to go very well, and I have so much more time now. I think I was on the verge of severe depression when I was doing 10 hour feeds, and getting thrown up on. The pump has been a life saver, SERIOUSLY!