Tuesday, June 30, 2009

The taste of traveling.

Alex loved chewing on, and banging the shells that I brought home from Florida in his mouth. Normally you would take a little shell away from a child when they are shoving it in their mouth. With Alex, and his aversions, I encourage him sticking things in his mouth, I was so happy with the way he was putting this in his mouth, and not gagging!!! Today we are leaving for Colorado to visit family and have down time together. Maybe Alex will taste some Rockie Mountain??? Either way he is getting his first taste of traveling today that doesnt include a doctor or surgery, along with his first airplane ride.

Monday, June 29, 2009


No responsibility, no plans, no routine, sand, ocean waves, birthday parties, special gifts, blizzards, ihop, walks on the pier, long talks, sleeping in, omelets, sun, rain storms, = REST. We didn't do anything, but it felt like everything. You can see more pictures here......

Thursday, June 25, 2009


I HATE to fly.
I'm scared of heights, I don't like feeling how fast I'm going, I don't like turbulence, I don't like to think of the little screws holding the plane together. I hate looking at the wings, I hate the loud engines, I'm always watching the flight attendants to see what expressions they have, are they worried, or are they bustling about as normal? I dont let it stop me, but I HATE it just the same.

Today, bright and early Myssie and I are flying to Florida to meet up with some other RTS mammas. So Myssie, I apologize for any panic attack I may or may not have on the take offs, and landings.

Alex loves his airplane card that we do when we are going over flash cards at meal time. I make it fly across, and back while I make a very good I might say airplane noise. He laughs, and smiles every single time. Now my smart little man, will take the card from me, and hold it up, his way of making it fly, while I make the airplane noise. He makes my day! I miss you already boys.

Wednesday, June 24, 2009

Wrestling monsters

The thought of wrestling monsters doesn't really seem like a far fetched thought to me.

Wrestling the eating monster, the reflux monster, the throw up monster, the surgery monster, the respiratory monster, the infection monster, the really, really, really big RTS monster.

I feel like every day there is a monster who needs wrestled back, or one lurking in the shadows thinking about pouncing on me with an attack. Even when things are good, I can sense these monsters. It seems I'm holding my breath waiting for the next wrestling match to start.

Sometimes it seems this is the hardest part of raising Alex, the knowing something is coming, maybe an infection, or even a surgery, something is next, and I just have to wait for it, not relax.

Always have my wrestling gear on, my stance, keep up on my toes, so I wont get tackled from behind, and held down.

For Alex, wrestling monsters only means crawling into his brothers room to find his sweet, friendly, bean bag monster. He hugs, rolls, flips, and wrestles this friendly monster. I got your back buddy, Ill wrestle the big monsters, and you stick with yours.


I'm leaving for Florida tomorrow!!!!! No monsters to wrestle there. Just rays to catch, beaches to lay on, and friends to laugh with.

Tuesday, June 23, 2009

Summer fun.

Yesterday Noah, Joel, and I went to the pool while Alex stayed home and napped with my mom. Noah has been jumping off the high dive, but my five year old, sweet brave little Joel surprised me when he said he wanted to go off the high dive too. I asked the life guard if there was an age limit, he said they just have to be good swimmers. I said he is a great swimmer, but I don't know if he will jump. I watched him climb up the ladder, and eyed the lifeguard to make sure he had his eye on Joel. Joel walked to the edge of the board, and jumped, then he did it again, and again, and again. Here is Noah midair. Joel on the high dive, Noah on the low.
Joel on the high dive about to jump!

Monday, June 22, 2009

Fathers Day

On fathers day, the boys got to fly in the sky with their grandpa aka "pops", my dad. They had a great time looking at all the different airplanes, and remote control airplanes on display.

The fathers and boys.

Noah and Joel and pops's RC airplane.

and for all of you who have asked for a belly shot, I offer this distorted image of me in the nose of an airplane........

Friday, June 19, 2009

Lazy days of summer?

Where did they go?
Thursday I leave for Florida, get back on the 28th, on the 30th we leave for Colorado, come back the 6th. On July 10 we x-rays of thumbs, and have pre op appointment for Alex's surgery (urology) which is on the 20th. Then only 3 weeks of summer left. August 25th we see, ENT, and cardio. Then only about 2 weeks until this baby comes. YIKES!!!!

Thursday, June 18, 2009

All better........I hope.

Sorry for my absence, I have been mentally recovering from the stress of the past week. Alex was so grumpy last week, would try and play, but just cry and fuss instead. I didn't know what was wrong, no fever, no outward signs of anything, accept a tiny bit of a stuffy nose. Which the nutritionist thought was from milk allergy.

So everyday he was fussy, crying himself to sleep, crying at meals, crying all the time. Then when he woke up in a pile of bile I knew he needed to be seen. I was thinking GI, but it seems the doctor was right and it was a sinus infection. The medication seems to be doing the trick, and he is much happier.

I leave for a very exciting trip to Florida in a week, to just be with, share with, laugh with, talk with, other mommy's of RTS sweeties that I have bonded with since Alex was born. I cant wait, but Alex must be healthy for me not to worry, and to be able to fully enjoy this trip that was a year in the making!

Dont you think he seems to be feeling better????????????????

Tuesday, June 16, 2009

A Quick Update...

Hi Ya'll, this is Jessica's friend, Myssie (Mom to William, 2.5 years, RTS). Jessica called me this morning and wanted me to post about what has been going on. Alex has been very grumpy the last few days and he vomited yesterday. This morning he woke up and had thrown up bile during the night. Jessica seems to think that he is in pain so she has taken him to the doctor. I haven't heard anything from her this afternoon. Please keep them in your thoughts today and pray for answers to Alex's pain. As soon as I hear something I will update.

UPDATE: Alex and I are home. The doctor thinks Alex's tummy is fine, and we don't need to do an upper GI. She does think he has a sinus infection which I guess can cause nausea, and vomiting. I didn't know this. Alex has been a little, and I mean a little snotty. I didn't even break out the suction machine with this because it was such a little amount of snot. Alex was unusually grumpy these past few days, sometimes holding him wouldn't even work, and that has never happened. So I knew there was pain, then with the bile this morning I was scared we had a block or twist in his intestine. Because he had malrotated intestines at birth we have to be extra careful when unusual vomit occurs. The doctor seemed confidant that his tummy was fine. I hope she is right. I watch mystery diagnosis too much.
If his vomiting keeps up then we will see his GI doctors in St.Louis either Thursday or Friday.

Monday, June 15, 2009


I'm exhausted from tube feedings, throw up, medications, therapy, 45 minute feedings three times a day, worry, upcoming surgeries, upcoming appointments. Wishing he would talk, hoping he will talk, hoping he understands me, wishing he could let me know. Worrying about others hurting him, wondering if I'm doing enough, the fussing, not knowing whats wrong, the fussing, not knowing how to help, waiting rooms, doctors guessing, the possible medical issues, the medical issues, the delay, insurance companies, medical bills, remembering how easy it used to be, holding back tears, missing friends, not having a church family, feeling sad when something great happens, worry, wondering, hoping, continuous care, fear, doctor appointments, waiting, wondering, disappointment, therapy, tube feeding, medications, surgeries, wishing he would talk, hoping he will talk......
I'm exhausted.

Up, Up, and............ crash.

Alex loves laundry baskets. He loves to dump them, and turn them, and flip them, and ride in them. So the other day I was sitting here at the computer and looked over at little bird, and he was climbing up a stair to get his basket. I started to snap pictures, I was so impressed. He forgot that he had climbed a stair, and fell backwards onto the floor, I was there and grabbed his arm so the fall wasn't too hard, and it was just one stair. The next day in therapy he went half way up the stairs!!!!!

Thursday, June 11, 2009

Does that work for you?

A question I was asked yesterday by Alex's nutritionist.

Whom I love , just so you know.

The question got me thinking though, and so here I sit, venting, letting it all out to you.

I was excited for his eating speech therapist, and the nutritionist to see how well he was eating his textures.

I opened the door, welcomed them in, and with her knowledge filled eyes she asked about the bumps on his arms. I had noticed, but I have bumps on my arms, so does Noah, in fact 1 in two people have them, its hereditary, so it made sense to me that more than one of my children would also have bumpy arms. She also noticed that he had a snotty nose, I answered yes its been a few days. Has he been getting lots of milk products I was asked, actually yes, since adding the textures the milk has increased. He probably is allergic, lets cut out all dairy, and see if his bumps and snotty nose go away. Again, I want you to know I love our nutritionist, she has really, really helped us along the way!!!!

Then comes the weigh in, the height, and the head measuring. Alex lost 9oz!!!

Since adding the texture, he has been down quite a bit with the puree food, usually taking 2oz of pureed food per meal, now only one, along with texture. So she says we are also going to increase his volume per feeding, not much just 10cc per feeding totaling an ounce a day. Does that work for you?

This is what she asked me. Does that work for you.

Well no, I thought, none of this does, the tube feeding, the weigh in's, the therapy, the doctor appointments, the surgeries, this doesn't work for me. I didn't know I had a choice, if I say this doesn't work for me, do I get a easier option????? No milk allergy? No tube feedings? Maybe they could have asked me that in the NICU, or right after he was born. Does this work for you? No, thanks, could I have another scenario please.

So my answer was no, this doesn't work for me, but it has to, he cant lose weight, he needs to grow, he shouldn't have dairy if he is allergic, but no, this doesn't work for me. But I have to make it work, like I have since the day he was born. Things get relaxed, feel good, become routine, and then BOOM a change, I hate it, it makes me want to cry, sometimes it makes me want to quit, it doesn't work for me, but like I said in this post, I have to go on, that's what we moms do, it doesn't work for us, but we still have to twist it, and turn it, and make it our new normal, and get used to, and prepare for the next change. Not because we are so strong, or amazing, or better at it than the next mom, we HAVE TO.

But to answer the question, no this doesn't work for me at all.

Tuesday, June 9, 2009

Not much going on, so much going on??

This week is vacation bible school at our church, every morning I wonder if we are going to make it on time, and we do, but with seconds to spare. This week is also the first week of Alex having 2 extra therapies. So now its, Mondays PT, Tuesdays ST, Thursdays OT, Fridays ST and DT. Its the speech that has been added twice. The last two sessions he has been very grumpy, and not doing much talking. I wonder if its the time of day, first thing in the morning, or if he just isn't familiar with the environment. Joel also had his eye appt this week for kindergarten, he passed with flying colors. So it has been so very busy, I have been to emotionally exhausted to type, and nothing that seems worthy reporting has taken place. So I leave you with pictures, and i will do my best to come to this chair and share whats going on, even if its nothing at all, or so much? Here is Joel in his class at VBS, he wouldn't smile at the camera for me.
Just for a bit of an Alex fix........

We had friends over on Sunday, and she really took to Alex, he sure didn't mind. If she isn't careful she might find herself with a babysitting job:)
In 10 weeks Im considered full term.......I just dont think I can be ready that fast.

Friday, June 5, 2009

A favorite place.

Alex loves to go to the window, and talk to the outside. Or maybe he is talking to his reflection?

He does have a sweet reflection.

Thursday, June 4, 2009

Winds of change

First day of summer!!!! I'm so excited to spend everyday with my boys. This summer is also bringing with it changes.

Alex will be going on his first vacation, first airplane ride, and first trip to the Rocky Mountains. I'm excited, but I must admit I'm nervous. There is so much to bring with us, I'm scared I will forget something: his food, feeding bags, syringes, his medicine. By the way can feeding pumps handle the security at an airport? You know how film in a camera can be ruined, will his pump be ok? I know its like I'm looking for things to worry about.
July 20th is Alex's surgery day. I'm excited to have it out of the way soon, but never is handing your sweet child over to someone who is going to sedate them, and cut on them easy. He will be having his testes brought down, and his right eye probed since it is completely blocked. (tear duct).
Alex is moving forward so fast with eating, and fine and gross motor skill. Just this morning he had honey nut Cheerios (soggy in milk of course) for breakfast, no gagging, no choking. I would give him yogurt after a cheerio to help it go down, and he did great!
He is also pressing buttons more and more with his hand, and not his mouth. Although, I find the mouth pressing very much a precious skill. He is pulling.

and sliding things. He is doing all this for the reactino the toy gives, he know button/lever/string means reaction
this week was also Alex's first sucker. We went to the bank, and I thought it was time for Alex to share in the joys of going to the bank. I handed him the tangerine goodness in the car, and it went straight for his mouth, there it stayed until the sucker went back to far, he took it out and threw it.
When we got home, I washed it off, and gave it to him. He wasn't as thrilled since he knew he could be gagged, but he kept it in for two pictures, before throwing it again.

here is to firsts!
any tips on traveling with a tube fed baby would be great!
Also this sweet girl is having surgery to day, send them your love!