Monday, June 30, 2008

Monday

This morning Alex threw up again during his 5:00 feed, not everything though, so I didn't worry about feeding him again. It looked slightly brown, so I decided to call GI, since Alex did have a malrotation of the intestines, we always need to consider the possibility of a blockage or twist in his intestines. My gut feeling is the brown was left over banana from dinner the night before, it did not smell bad, and it kind of looked like old banana to me. (That's right I smelled his vomit!)

He poops every day, and his tummy is not distended. I did call GI, and of course they always go on the safe side, and have scheduled an upper GI study on Thursday morning. Our feeding pump came today so we will have our first night of feeds tonight, which means smaller bolus feeds tomorrow, if the throwing up improves greatly or hopefully stops, then I am going to cancel the upper GI. We will wait and see how it goes with the pump.
The 9:00 feed lasted over two hours, but he did not throw up.
12:00 feed went well, he slept through it, and did not throw up.
3:00 Physical therapy for an hour.
4:00 feed, threw up in the middle of it, but probably only lost an ounce. I have considered having a bowl nearby to catch the vomit, then I could actually measure how much he has lost. Gross huh.
7:00 feed went well.
We just put him to bed, as soon as he is asleep, we will hook him up to the pump. I am counting on this working, I am so tired, emotionally.

Sunday, June 29, 2008

Sunday

I have decided to write down or type I should say the events of each day for a week, mostly for myself. I am hoping in a few months to look back, and see that things have improved, and become easier.


This morning during Alex's 5:00 am feed he woke up coughing which usually means he is about to throw up or have an emesis, as they say in medical terms, I have been wanting to use that word for a long time now....e m e s i s.....I jumped out of bed, and unhooked him as quickly as I could, in an attempt to distract him from refluxing and losing his feed. It worked for a while, but once I started the feed again, he threw up. The throwing up has only gotten worse, it happens everyday, and has become normal to be a few times a day. I have stretched his feedings out to last two hours now, and that seems to help a little. "My name is Jessica, and I am a human continuous drip." Don't worry I have ordered a feeding pump, and we are waiting for that to arrive.
Lay Alex back down, go pump (breast milk).
Alex woke up around 7:30, time for some physical therapy before the next feed.


The 9 am feed went well, it lasted two hours, but no emesis, there is that fun word again!


12:00 feed lasted over two hours, only to end in throw up all over me, at Perkins while we were eating lunch, so that was fun.


3:00 feed, lasted two hours, everything stayed in. Time to go pump again. Thirty minutes after the feed ends, time for more PT.


7:00 feed, lasted two hours, went well.........Exhale.......Relax.........


9:30 get Alex ready for bed, massage legs and feet while singing you are my sunshine, read a book, and lay Alex down, no singing tonight, he went right to sleep. better go pump again:)

Everything starts over again at 5:00am.

Saturday, June 28, 2008

Dysmorphic features

Those are the words the doctors used to describe Alex after he was born.
I recently requested all of Alex's medical records, and just received the records from the hospital where he was born, he was only there two days so there wasn't a huge pile to go through, when I get the records from Cardinal Glennon, ha! I believe he has 3 humongous binders crammed full from his 6 week NICU stay, and then all the procedures and visits since. Anyway, back to dysmorphic features. I read through the records from when he was born, and it brought back those first moments like it was yesterday. That moment he was taken out of me, and he let out one little squeal, then fought to breathe, from the time the doctor told me of his malrotation of the intestines, and the removal of the cyst that was attached to his belly, from the oscillator to the helicopter, and the horrible lullaby music that played over and over, as I sat in my room with an empty belly, and a breast pump. Dysmorphic features...... those were the first words that described my baby, we mothers want to hear, how long his fingers are, what an angel he is as he sleeps, look at those sweet ears, long legs, but not dysmorphic features. I looked it up to see exactly what it means and it means malformed.
I know what I see........












Friday, June 27, 2008

Tadpole

Alex would prefer the warm bath water, but once he gets used to the initial shock of the cold pool water, he relaxes and enjoys. I did manage to find a pool that has a cover to keep his eyes out of the sun since he hates sun in his eyes, he is also on a medication that has side effects if there is too much sun on his skin, so this pool was necessary. I also opened up the umbrella for our table, so he had extra shade!




Alex seems to be getting all his teeth in one big swoop. Now we are working on the eye teeth.









puffy RTS feet:)

Wednesday, June 25, 2008

First thing in the morning


I usually get Alex out of his pj's right away, but Tuesday morning I needed to get his feeding, and medications ready first so I plopped Alex on the floor with his brothers, and let them play. I hadn't even wiped his goopy eye (clogged tear duct).
Alex has become very interested in the things around him, he will grab anything in front of him, but put it out of reach and he wont bother.
Noah and Joel have finally become more interested in playing with Alex, I think one because I have relaxed, and I'm not quite the germaphobe I was this winter, and two, Alex is much more interactive with them, laughing, smiling, and cooing at them whenever they pay him any attention. He really is becoming quite the character, and I love to see how Noah and Joel love on him. Noah adores him.



























Monday, June 23, 2008

OT

At Alex's last OT session his therapist brought one of these balls with her to see how Alex would like it (texture, sensation, that sort of thing). I saw one in the store and picked it up so we could play with it daily. He likes to pull on it, it seems to make him talk too. I couldn't figure out which picture to post so I used all of them! Like I said he is becoming quite the ham when the camera is out.





Saturday, June 21, 2008

Our day



Today was a very eventful day. First of all I met with Will's mom Myssie for lunch at a tea room (we met half way). It was nice to get out of the house without kids, and so nice to sit with someone that I can relax with, not wonder what she is thinking, or wish I had things her way, I simply could just be. We are still getting to know each other, but it also felt like sitting down with and old friend. I know we will have many more days together to come! She is a year ahead of me in all of this, and very encouraging.


When I got home, we went out to eat, and then to the store to stock up on food, while in the baby aisle, I saw this duck bath tub, and I knew it was for us! I have been bathing Alex in his infant bath tub which he out grew months ago, but I could clean him safely. He however did not get to enjoy his bath because he wasn't fully emerged, and was laying on his back. So as soon as I could get him in it, I did, and he loved it. I washed his hair like a big boy, and he didn't mind the water in his face. This is a great tub for anyone who's child cant sit 100% on their own because the sides are so close to the child , and high they don't fall out, and when they do fall it doesn't hurt. Alex loved taking a bath, and I let him stay in for about 20 minutes.
I mention that he is becoming quite the ham, smiling whenever he sees the camera!
































Wednesday, June 18, 2008

Action shots with happy apple


I took some action shots of Alex and his happy apple, it is one of his favorite toys, he tries to pick it up, but it is too heavy.
He was very verbal during this photo shoot. Lots of "beeeoooo", and "veeeoooo".
He is sitting very well on his own now, when he falls back it is because he is done sitting, and that is how he lays down, just by throwing himself back. So I still put something behind him, but not because he cant sit, and support himself.


































Tuesday, June 17, 2008

Why do I do this to myself????

Every week I get a email sent to me about what my baby should be doing........Why do I do this to myself? AnnaKates mom says she may write a book for milestones and children with special needs, I will be first in line for my copy.
The other night at Noah's baseball game there was a baby sitting right in front of me, taunting me really. Little show off, she was observing, smiling, being very social, and the worst thing....She was eating right there in front of me, she begged for bites, and finished a whole jar of baby food in 10 minutes. She was being a very sweet, happy baby, and it stung, it hurt to sit there and watch her. She kept trying to get my attention and smile at me, and all I wanted to do was stick my tongue out at her.
I didn't though..........I really am a nice person.

Your 9-month-old: Week 2

How your baby's growing:By this week, your baby will start to remember more specific information, such as where her toys are in your home. She'll also be able to imitate actions she's seen as long as a week before.These skills indicate that she has recall memory — the ability to remember some details of a specific experience for a short time — though she still doesn't remember most of her experiences. Long-lasting conscious memory of specific events won't develop until your baby's second or third year, when real language emerges.• Learn more fascinating facts about your 9-month-old's development.
Playing and learningYour baby can now put objects in a container and remove them. Give her a plastic bucket and some colorful blocks so she can practice this new skill. (Make sure they're not so small that she can swallow them.) She also likes toys with moving parts, such as knobs, levers, or doors that open and close. Big plastic cars that your baby can wheel around on the floor are fun playthings, too.If you take a toy away from her, your increasingly assertive baby is likely to object. She's really starting to be able to make her needs and wants known. Some sound advice: Give her something new before you take the other object away.About half of babies this age will initiate passing games — giving away objects and then taking them back. Be her playmate. Try rolling a ball to your baby and see whether she rolls it back to you. Give her a sorting toy or stacking rings and see if she sorts or stacks or hands the pieces to you. She'll also like to share her food, so accept these "gifts" graciously.

Sunday, June 15, 2008

You know you have a child with special needs when......

You compare ER's instead of grocery stores.
You compare your child's oxygen saturation's.
You view toys as "therapy.'
You don't take a new day for granted.
You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
The clothes your infant wore last fall still fit her this fall.
Everything is an educational opportunity instead of just having plain old fun.
You cheer instead of scold when they blow bubbles in their juice
While sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
You also don't mind if your child goes through the house tooting a tin whistle.
You fired at least 3 pediatricians and can teach your family doctor a thing or two.
You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
You keep your appointment at the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there!
Fighting and wrestling with siblings is PT.
Speech therapy occurs in the tub with a sibling.
When potty training is complete, you take out a full-page public notice in the Washington Post.
When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
You keep a daily growth chart.
You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
You phone all your friends when your child sits up for the first time, at age two.
With a big smile on your face you tell a stranger that your four year old just started walking last week.
His medical file is two inches and growing.
You have a new belief...that angels live with us on earth.

(author unknown)

Saturday, June 14, 2008

Summer....part 1

Last Wednesday was the kick off to vacation Bible school, the church made a huge slip and slide for the kids to slide down, and there were lots of water games. Here is Joel getting himself wet, and Noah at vacation Bible school, during recreation time.




The huge slip and slide...... Both the boys had lots of fun this night at church going down the slip and slide. The theme to vacation Bible school this year was Outrigger Island (Living Gods unshakable truth.)








Noah and Joel on their way down the slip and slide.



Joel getting ready to slide......













Joel riding his big wheel in the front yard.




We have had a very stormy start to summer. Here is an image I caught of lightening and a rainbow. I find it signifigant of my life right now.






Thursday, June 12, 2008

Pain free?????

We just put Alex to bed without Motrin for the first time in over a month.........His two front teeth have begun to break through, and I don't think are bothering him like they were, I will let you know.
UPDATE (FRI MORNING): SWEET SLEEP FOR EVERYONE!

Wednesday, June 11, 2008

I love this picture!


more numbers.....


The nutritionist was here this morning along with ST, and Alex grew two inches in a little over a month, she measured him twice to be sure......He is 28 inches long!!!!! He also gained two pounds in a little over a month, which doesn't surprise me a whole lot, I thought we had slowed down on the weight, so did she, but with the two inch gain in length she said we wouldn't worry too much about the weight. These are numbers I can be happy about, even though I don't want a 30 pound baby under a year old.( we are only five pounds away, and at the rate he is going we could reach that by September) I am hopefull we will be mobile soon and he can burn off those thighs!


I have also seen signs of Alex attempting to get on his knees, they are small signs, if you didn't know what to look for you probably wouldn't notice, but he is emerging, I hope to have a crawler in the house by the end of the summer, or at least before his birthday, September 7.


Today was hard, I had to wake Alex up for his therapy this morning at 8:15, and then he didn't get his afternoon nap because he had speech with his Cheri, 30 minutes away, my philosophy has always been, let babies sleep, but today I couldn't. He made up for it when we got home, and slept for two hours.

I have a bunch of pictures of our summer fun to share, but because of vacation bible school this week I haven't had time to get them on the computer, and onto the blog, but I plan on it this weekend. I also have not forgotten about my mothers day video..........There is just too much to do.

Monday, June 9, 2008

Just Numbers

I will admit it, before Alex I compared my kids to each other, and other kids, I took pride in their abilities to reach milestones fast, I loved the numbers..........

Today was Alex's IFSP meeting. This is when I sit down with all of his therapists, and we set goals that we want Alex to achieve in the coming months. Also it is when I get to hear how far behind we are. Alex is at a 3-7 month level developmentally, some things he does at a 7 month level, others are only at a three month level.
For instance he doesn't roll from back to tummy yet, but he is sitting well, and rolling from tummy to back. He isn't crawling yet, but he is socially at a 7 month level. He doesn't play peek-a-boo, but he is cooing a lot (bu, oo, uu, ff), and of course his raspberries. They also go over his health and measurements, he has been healthy since November, with only two ear infections in between. He weighs 24 pounds, and he is wearing 18 months in his clothes. Once he gets moving we hope his weight will slow down, he gains about a pound a month, which is better than the two pounds a month -4 months ago.
They are just numbers, they are just numbers, they are just numbers...........

We have also added another therapy session to our week, developmental is now coming once a week instead of once a month. So Mondays is PT, Wednesdays is ST, Thursdays is OT and now Fridays is DT. (sigh)
Alex has come from the oscillator to sitting up....they are just numbers, just numbers just numbers.
Alex has come from x-rays every 4 hours to laughing...they are just numbers, just numbers just numbers.
Alex needed a blood gas taken every three hours, now he sits in the basket of the shopping cart...they are just numbers, just numbers, just numbers.
Alex I am so proud of you.

Saturday, June 7, 2008

9 months old today!!!!!


Tonight we ate at Apple bees for Alex's 9 month birthday celebration, he ate applesauce, and played with his toys. He sat in his chair the entire meal....What a big boy!




We went to the store this evening, and my big boy sat in the cart all by himself, now I don't have to lug around the infant car seat for shopping anymore.




This is what I see as I leave the room after laying Alex down in bed to go to sleep, how am I supposed to walk away from those eyes. He doesn't cry, he just watches me go, then soon after I'm gone he starts the singing.













Today for Alex's birthday lunch he had chicken and peas.....mmmmmm.








I can't believe that Alex has been here with us, as long as I carried him in my tummy. It doesn't seem like so long ago that we lived in St.Louis, and didn't know if Alex would even survive. It seems like days ago that I first heard the words Rubinstein Taybi Syndrome, and yet here we are, safe and sound at home 9 precious months old.We had a busy day today..........Happy nine months Alex, we are so grateful you are here.