Friday, May 29, 2009

I dreamed of the day.......

....when Alex would be all over the place, and I love every single minute of him crawling, exploring, even getting into things. One of his new favorite places is the fridge, and the magnet music toys.
He presses the button (with his fingers!) then he lays his ear on the fridge door. Maybe it sounds better that way. Can you stand it? He is so edible.....

Thursday, May 28, 2009


Pushing your children past their comfort zone is usually hard. Throw in extra doctor appointments, 5 therapies a week, medications, and tube feeding, and its even harder. A few months ago, Alex went from shaking his head back and forth to avoid the spoon coming at him, to leaning in and opening his mouth. It was nothing I did, he just decided he wanted to eat. It did come along the same time he stopped throwing up a lot, so maybe his tummy, throat, ect just felt better.
So for a few months now we have been comfortable feeding him his pureed food, and he has been comfortable with it. Every once and a while I would stick an easy solid in, but I have never been constant. Its time to push! I don't want Alex on purees forever, and I certainly don't want him on his feeding tube forever, so its time to push. At every meal I am going to feed him some sort of solid, along with his pureed food. Banana, potato, cooked carrots, nutri-grain bar. You get the idea. I am also going to offer him his cup.
This started yesterday, and the first feed he did very well with the banana bites, but was very aversive to his cup, then the next two feeds he was fine with it all. This morning he also took his cup well, and handled the chunks. So long story short, I have to be consistent, and he will move forward. It will be a long road, we aren't anywhere close to taking out his button, and throwing away the tubes, but we are on the right road, as long as we don't get comfortable. Here is his pureed food, banana chunks, and some soft cookie. Also his blue cup that he drinks very well from.
Another department we are lacking in, even with his 5 therapies a week (ahem) is his sensory issues. So I am taking it upon myself to work on this with him. He doesn't love his hands to be dirty, but he tolerates it for a while, and he loves to squish his fingers together when they are covered in whip cream. The boy will not put his hands in his mouth, even covered in a sugary mess. He has to be clean, and away from food before his hands go into his mouth. Thank God he takes the spoon! So once a day we will be working on being messy.

So even though it takes more time, makes more of a mess, I have to push.
Because I am telling all of you, I will be consistent!!! That means everyday, every meal.

Tuesday, May 26, 2009

Two appointments down hundreds more to go.....

So after our one hour forty-five minute drive we arrived for our NICU follow up appt. First Alex had to go to the psychology department to be evaluated, I really didn't want us all to have to sit through this. Alex is evaluated everywhere, I certainly didn't need him evaluated again, and it was nap time, how well was it going to go? It didn't go to well, Alex was in a new environment, was being fed, and cared so much more about the lights above him, and throwing anything the doctor gave him. He scored much lower than his IEP evaluation, but I know what he can do, and didn't need this third evaluation in 3 months to tell me where we were at. Why must everyone evaluate him???
Then it was onto our eye appt. Here is Alex waiting for his name to be called. He was looking at the helicopter pad he landed on when he was two days old. the eye exam was quick, and we decided to wait and dilate his eyes, check his pressure, and vision when he was sedated for his up coming surgery. This was to be July 20, but the date will change hopefully sooner than later. This way Doctor eyes, and Doctor urology can work together, and Alex only has to be sedated once.
Of course we left the hospital at 4:50, just in time for rush hour traffic.
Our drive home took two hours, if you were following me on twitter you already know that I let Joel pee into my water bottle, because he had to go so bad, and we were sitting in the middle of Saint Louis traffic, and I had to play a grab your toes game with Alex to keep him happy the last 20 minutes, but its over. Two appointments down hundreds to go.


Im going to take lots of pictures today, and I will also be twittering in case anyone wants to know what we are up to today. Its me, Joel, and Alex on the road today.

I will post tonight on our day.

Monday, May 25, 2009

Books, skills, bikes, and an adorable boy.

Alex loves books, he can stand at a toy box full of light up toys, and musical toys, but he will go right for the book. He loves to sit and look at the book, he loves to have us read the book, he loves to turn the pages of the book. Did I say turn the pages???? That's right I did. Alex was being evaluated all last week by his therapist because his IEP is coming up, and he turns pages!!!! One page at a time!!!! Why does this make me smile? Well, its a 20 month skill. How old is Alex you ask? He is 20 months! I think its a gift that he loves books, and I'm thrilled at his ability to sit, look at, turn the pages, and enjoy a book.

Other exciting new around our house is that Joel learned to ride his bike without training wheels this weekend. He didn't want to, he isnt a thrill seeker, but it was one of those times where you teach your children to fly, or give your child wings, how does that statement go? Anyway, we knew he could do it, and to his surprise he picked it right up. Sunday morning he wanted to try again, but his daddy had to go into work, so I told him his very pregnant mamma wasn't going to run along side him. There he went, all by himself!

We had a very relaxing weekend, got the garage cleaned out, the boys bedroom furniture painted, and played in the water.

Alex posed for the camera whenever it was out. Here he is crawling to the stairs. We haven't found a baby gate that fits at the top of our stairs. One side is a regular wall, and the other is about 12 inches up, and then stops. He hasn't tried to go down, but he will reach, and feel that the floor ends, sit back look for a little bit, and then reach and feel that the floor ends again. So he is very curious. So we are always on high alert.

What a handsome boy!

Tomorrow we go to St.Louis for a NICU follow up, and eye doctor appointment. I will update when we get back tomorrow night.

Thursday, May 21, 2009

Pressing buttons, itchy rash, and a flashback....

Sorry I have been absent, all three boys are feeling better. Alex's medicine makes him a bit more refluxy if I can make up my own words. the Urologist actually said we could stop giving him the medicine, but his urine sure smelled, and I mean STUNK, and I am a firm believer of finishing antibiotics once they have been started.
This itchy rash on my arms, and face is making me miserable. I went to the doctor and he said it looks like some sort of contact allergy, I have no idea what it could be, I'm not eating or using anything new.
Noah's baseball has also started, so it has been very busy around here, and soon Joel will start baseball.
Now on to that button pressing. Alex has been pressing buttons to make things happen for quite a while now, only he started by using his mouth. Sure the therapist don't like it, but I think its cute, and what a smart boy for finding a way to press the button before realizing his hands could do the trick. He has just now started using his hand. Still no pointer finger, he uses his whole hand, sometimes even his fist, but I still think its cute when he uses his mouth.

Flashback.....Alex a year ago this month!!!!!! Look at those arms:)

Tuesday, May 19, 2009

waiting (updated)

Waiting to hear from urology. The good news is that the e coli in his urine only grew to a count of 20,000, most infections are over 100,000, so this is a mild infection. I am waiting to hear from urology. To be safe I would like to have a VCUG, before July, so if in fact he does have reflux it can be fixed when he has his testes brought down, and before the new addition arrives. (I just heard from urology, and the doctor doesn't even consider this an infection, there were no red blood cells, and something else, but I was so happy to hear no infection I didn't retain a lot of what she said. What I do remember is that she said the doctor is not concerned about needing to do another VCUG right now, if this happens again, I will request one.)

While waiting for this phone call this morning, Alex was taking his morning bath his prevacid wouldn't go down his tube (this is when I give him his morning meds) I tried pushing it through with the syringe, and it was like concrete, while this was going on Alex poops in the tub, trying to avoid UTI's I don't recommend sitting in a bath full of poop water. While that is going on, the tv guy shows up, and seconds later the phone rings. I didn't have a full blown panic attack because it was urology with the good news.

I have no creativity coming out of me, something about 3 kids on medicine twice a day. And for some reason I have hives on my arms, and my cheeks are red and itchy to boot. Yes, I should go to the doctor, but I'm tired of doctors and appointments and tests, so I wait, and see what happens.
my little pregnancy update over there on the side says the baby weighs 1.2 pounds, but at my ultrasound two weeks ago the baby already weighed 1.4 pounds.....I think this baby might be big.

Monday, May 18, 2009

E coli, strep, and questions.

So it turns out Alex does have a UTI, and it looks like e coli is the culprit. I am waiting to hear from the doctor about if we need to take further action as far as kidney reflux is concerned or if we wait for another UTI to happen before we would do that. Alex seems to be feeling fine, and his urine no longer smells.

I'm wondering what the chances are that his urine could have been tainted because he was bagged and not cathed. Can you have a UTI and not have a fever? Cathy??? This was one of the sure signs the doctors told me when Alex did have the phase 2 reflux (the fever). Maybe I should have let him be cathed??????

He wasn't throwing up (which was another sign), the only sign Alex had was smelly urine. And he never got a UTI when he had the reflux, so it puzzles me that he would get one now. Can kidney reflux come back once it is gone? Anyone that knows anything about UTI's, and kidney reflux feel free to email me about any info you think I could use when I talk to the doctor.

Alex has did throw up twice on Sunday, I don't know if it is the medicine (which can cause nausea), or the UTI, but something is causing him to throw up because it is so out of character for him to do. When you need to stay hydrated throwing up is one of the last things you need to do, I tried to tell him that, but he threw up for the second time anyway. Hoping for no throw up today!

So I hope to talk to his pediatrician and urology today, and see if we need to take further action or if one UTI in a year is anything to get worked up over. If his reflux did come back I would want it to be fixed when he has his surgery in July.
Noah and Joel are back to being themselves, strep is such an easy fix.......

Friday, May 15, 2009

Bad day

This morning Noah and Joel both tested positive for strep, when we came home from that my husband said that Alex's diaper smelled really bad, in fact his entire room smelled of strong urine. And the boy isn't dehydrated because he gets water all night long. Sure enough I went to throw away some trash, and the smell of the diaper punched me in the face. It was sooooo strong. So back to the doctor we went. After waiting an hour in the small room with 3 sick boys Alex had a strep test just because its in our house, and his was negative Then they the put a bag on him and he went pee, and right now it looks like he might have a UTI. We wont know for sure until the final results come in, because right now the white blood cells in the urine could have been from his skin, since the urine sample wasn't taken by catheter. My request, I couldn't bare to have him cathed, if there was another way, but I guess any other way isn't as definite as a cath sample.
So we have started him on medicine, and we wait for the final results. I hope this has nothing to do with kidney reflux. You may remember back in September his VCUG showed no more signs of reflux, so hopefully this is a random infection, and wont become chronic.
So we spent a total of 3 hours at the doctor today, I'm done....I have no cute pictures because it wasn't a cute picture day.
Joel did lose his first tooth today, I better go capture that before the day is done.

Thursday, May 14, 2009

Just because you have special needs

doesn't mean you get away with anything and everything.
Tuesday night was the first time I ever have had to tell Alex no. He is full blown mobile now, and wanted to play with a crystal bowl that was a wedding gift. First of all it was heavy, and could hurt him, second of all he could hurt it, and third just because he is SOOOOOO SPECIAL doesn't mean he can play with crystal.
My camera wasn't near so I snapped these with my phone.
Alex would reach for the bowl, and I would move his hand and tell him no no. After about 3 attempts he got what I meant, and laid himself flat on the floor and cried. He didn't scream, it wasn't a tantrum, his heart was broken, once I started taking pictures he sat back up, but his heart was still broken.

poor adorable baby...........

Tuesday, May 12, 2009

"Come here Alex"

Even though Alex doesn't talk we communicate, and he understands so much of what we say. I can add another sentence in communicating with Alex. It tops the list as my favorite, although Alex would tell you "Do you want to patty cake" is his favorite. He also likes "do you want to read a book", "watch a movie", "play peek a boo", and "time to take a bath", Now I can tell Alex to come here, and over he crawls with his scrumptious





reaching for my hands for help

and melting my heart with his smile!

Monday, May 11, 2009

Happy Mothers Day!!!!

We had a wonderful day. We started the day off with a bike ride to the park, Alex wasn't really amused, but once I unhooked the shoulder straps he tolerated it much better. Don't worry he was still strapped in safely. Besides being attacked by the buffalo gnats it was a nice time. Then we went out to eat for lunch, went shopping for flower pots, and came home to relax. The older boys played outside all day long while I did not change one diaper, I did not do one tube feeding, I did take a nap on the couch, and I did watch some meaningless television.

What did you do?

Hope you had a wonderful mothers day!

Wednesday, May 6, 2009

Baby 4

I was the first patient of the day, so we went right in. the technician came in turned off the light and started, She didn't ask me if I was ready or anything. Although I would have told her I wasn't, and just told her to leave, so it was best that she just started. the first thing on the screen was babies tummy, with an empty bladder, and two kidneys to boot. She measured babies arms and legs, all measuring right on at 22 weeks. Brain, heart, and spine all look perfect. Baby was very active, probably had nothing to do with the orange juice I drank right before the scan. the bladder filled and she got a good picture of it. She couldn't get a picture of the arch of the heart, so I had to lay on my side to try and get baby to move into a more helpful position, but if you were following me on twitter you already knew this. Then doctor A came in and measured everything all over again, and the words I had been waiting to hear "no markers", "perfect", "right on target", were all spoken. The baby weighs in at a healthy 1lb 4oz, probably has nothing to do with my gigantic weight gain in the past 5 weeks. The doctor also caught a good picture of the babies voice box, and caught baby practicing to breath already. We talked about Alex a bit, and the doctor A said that he reads the blog to see how little bird is doing.
Baby profile

baby foot

snuggling up


Oh, I'm sorry did I not mention gender? That's because we do not know either. It is sealed tight in this envelope. Maybe Ill open it tonight, maybe I will wait until the birthday.

I wish you could all come with me.......

Im twittering.....

Tuesday, May 5, 2009


Alex in my belly.
This is it! My last day of ignorant bliss. You see, I'm frozen in time, to the night I found out that I am pregnant, my mind hasn't really followed along with this pregnancy. Part of it is fear, ok most of it is fear, and I just cant seem to get my mind to catch up with the pregnancy. I'm frozen. With all my boys I was making lists of names at this point, picking out clothes thinking about paint colors, an due dates. But I'm frozen.

Tomorrow morning I go into the doctor at 8:00 am central time for my sonogram. I will be 22 weeks pregnant. The same high risk doctor that did all my 3D scans with Alex will be doing this scan. No one suspects that there is or will be a problem, they are just making me comfortable, and being extra careful.

It was this sonogram that the cyst was found on Alex's tummy/umbilical cord, it was this time they noticed his short femurs, and my abundance of amniotic fluid.
It was that sonogram that began this new normal.

To be honest, I don't want to go in at all, I would rather just meet the baby when he/she is born. I'm worried their will be something wrong, I'm worried they might suspect something, and then cause worry for no reason. I used to be a need to know person, and still am I guess, but not with this.

So many people ask me if I have found out what we are having, if we are going to find out, is it a boy or a girl, as if that is the only thing to be concerned about when one is pregnant. I haven't given it one thought to what we are having, I don't have an instinct, and I honestly can say I just want healthy.

I just want my ignorant bliss...........I don't want my world turned upside down, inside out.

I will be twittering all day tomorrow, so you can know my every move.

Monday, May 4, 2009

To Noah and Joel.

I remember the first time I felt my relationship shift with my older boys. It was the day of Alex's malrotation surgery. I had spent the night at home, and we had to leave early that morning to be there in time to see Alex off to surgery. Joel was on the floor of his bedroom, and he seemed mad at me, I was leaving again, and I didn't know when I would be back. I could tell he was upset, but I had to go, surgery wouldn't wait. I kissed his head with tears in my eyes, and told him I loved him, and left. I knew in that moment that things had changed, that the way it used to be was gone.

Noah and Joel you have adjusted to all the care that Alex needs. For the first year he took up all of my time, and you were ok with it. You have always been happy, sweet boys. You had lost something, but you did ok, and made it through that year smiling, and laughing.
They don't ask me to play, or to read anymore. They assume Ill be too busy with Alex, or too tired. They are used to me saying I cant. I miss our time together, I miss them asking.

Things have lightened up a bit, and as your mom I have to make the first move, start a new normal for you.

I'm sorry boys it has been such a change for you, and you have handled it like little men. Your spirits are still sweet, and laughter still fills your mouths. I have never stopped loving you, never stopped missing you. I love you both so much, and Im ready to hear you ask.

Lets go play......