Friday, April 30, 2010

Long time no bloggie......

I know, I know.....

Its been so busy, but what am I saying, its always so busy. Max is getting 4 top front teeth, although this has not messed up his two naps a day, or sleeping through the night, he is just a little more needy when awake. Alex has a cold, the same one Joel is sporting, but nothing to be concerned with. Soccer practice, soccer games, making dinner, one load of laundry a day, just one! It keeps me caught up if I do one a day. I like it way more than having a day entirely devoted to laundry.
Noah is having 5 of his closest friends spend the night on tonight, our plans are to have a water balloon fight, a ball game in the front yard, McDonald's for dinner, and come home for ice cream sundaes, and video games, every boys dream right? Joel is having a friend over too, cause one more will only add to the fun! Really, I'm kind of excited about it! Crazy? I think not! Ask me again on tomorrow morning though.

Alex has an appointment at the end of May to get a prescription for SMO's, a new pair of kicks, and we hope he is walking before school starts in September! He is eating great, growing like a weed, in fact today he is wearing size 3T both top and bottom! The more I think about school, the more excited I get for Alex, I know the best is yet to come......Speaking of school, I'm going back. I thought I should add one more thing to this thing called life. Really though, since my 6 week stay in the nicu, I have known that instead of social work, I should have studied for a degree in nursing. SO now I plan to have a BSW and a nursing degree under my belt. Its too much, but I finally found out what I want to be when I grow up, and there is only one way to get it, that means more school. I have nothing but time, as I don't want to work full time until Max runs his skinny little legs through the doors of his school for his first day of kindergarten, so bring on the lectures, books, and exams..........

Oh, I got a perm too...I know what you are thinking and NO, I don't tight roll my jeans too! I love it! It was scary, I almost didn't do it, but I love and trust my hair girl, and she knew what she was doing!!! 4 hours later, after color, and rollers......I love it! It looks good when I get out of bed, it looks good at the end of the day, and all I have to do is scrunch and go!

So, it has been busy, like always. I have been "moming" it up, and things have been good!

Friday, April 23, 2010

Reality check

Last week Alex, Max and I took a trip to see the school that Alex will be going to after he turns 3.
I'm not going to lie, it was hard.
A reminder maybe of what is. I don't think about Rubinstein Taybi Syndrome everyday anymore. Alex is Alex, and his noises, stim needs, and special needs are just normal.
Walking into that classroom reminded me how separated I have become to my old life.
That was a life without Alex though, and I'm blessed to be here. I love our new normal, but it was hard.
I went with excitement at the thought of Alex in school, after all, Noah and Joel loved preschool, and there is just something sweet about dropping off your toddler in a stimulating learning environment full of other little toddlers.
The teacher greeted us as she pushed a little girl in a hammock swing.
Every child was busy with an activity.
Then came my reality check.
I don't even know what it was.
The children were beautiful and happy, and busy.
It was different.
It was hard to take in.
I loved how organized it seemed, and how the teacher was in tune with each child's differences.
It was hard to take in.
It was different.
The children were excited to change activities, and eager to participate.
The room was colorful, and happy.
It was hard.
I tried to imagine Alex navigating his way around the room, I sure hope he is walking by then.
Will he sit still, and obey?
Will he be frustrated if he cant express himself?
Will he miss me?
Will he love it?
It was hard.
I'm still excited.
It will be ok.

Thursday, April 22, 2010


Remember in this post when I admitted to not being a super mom, one of my examples was that I still had not put a picture of Max on his spot on the wall?
I have been trying to get the perfect picture of him, of course wearing blue to match his brothers.
Here are some recent pictures.....Vote for A, B, C, D, E, F, G, H, or I. Or vote that I keep trying.

Please anyone that reads this post should vote.
I have enough decisions to make, make this one for me!

Picture A.....great smile, too much drool? Picture B, again the drool, but I can always edit!

C. Is the flower cute in his face or in the way?

D. adorable, but he isn't wearing blue!

E. No smile,beautiful eyes!

F. Kind of smiling, but not looking at the camera, does that matter?

G. again, not looking,but sort of smiling.....
H. Looking straight on, but so serious......

I. Smiling, looking right at the camera, but not the best pose, or is it?

VOTE, VOTE, VOTE!!! You dont have to have a blog to vote!

Tuesday, April 20, 2010

We are so glad you didnt break your neck and die party....

I mean, plain and simple, we are so glad Alex is ok.
Not only is he ok, but there will be no serious consequences to his fall.
It is behind us.......
The evening we came back from seeing doctor spine, and he would tell us if laying in a hospital bed with traction would or wouldn't be in our future, we got a cake, and had a "we are so glad you didn't break your neck or die party".
I love to throw a party, just give me a reason!
This was definitely one worth celebrating!!!

Friday, April 16, 2010

Easter 2010

I was so excited for this Easter. It would be the first one that Alex actually cared, and even noticed his Easter basket. He could even enjoy some treats. Then on good Friday, of course you know, he got hurt, and our plans changed. We did have a get together on Easter Sunday, but most of these pictures were taken at our other celebration at my parents house, the way we had planned on celebrating.....just a week late.....
(real Easter Sunday)

(real Easter Sunday)

Max and his great grandma on the real Easter Sunday.

After Alex's brace came off we let him enjoy some of the treats he missed on Easter Sunday......

He may not feed himself his sausage in the morning, but you know he sure did feed himself his chocolate bunny!

Tuesday, April 13, 2010

Happy 7 months Maxton!

This past month you found out you could get where you wanted to go!

And army crawled for the first time on Easter Sunday! So glad I was home to see it!

You now put yourself to sleep. We can lay you in your bed when you are ready to nap, and thumb in mouth, you put yourself to sleep.

You are not only sucking down the bottles, but are eating every possible fruit I make for you, sweet potatoes, yogurt, and carrots, sometimes........

7 months! Can you believe it!?!?!
You are every bit of amazing, adorable, sweet, funny, and oh my, oh my, so full of energy!

Sunday, April 11, 2010

healing, fussing, signing,army crawling.........

Such a busy week!
Along with the normal basketball, soccer, and regular life and then throw in the stress of pain, and just plain worry, it has been a busy week.
I am so, so thankful for my aunt who came all the way from Colorado originally to watch the 3 boys during Alex's surgery, but instead to just be an extra set of hands. The laundry was done, the house stayed clean. Really clean too! It was a blessing, a huge blessing to not have to worry about all the household stuff getting done, on top of caring for Alex, and just plain worry. Then my mom who provided many meals! So thankful for the help. Those words really arent enough!

I just wanted to let you all know that Alex continues to improve everyday. His pain is less, and less. Today he went without any pain meds, but it did leave him a little fussy at times, sometimes we cant get him to calm down, other times he just fusses. He still isn't back to normal, complains a lot, which is just not like him. I miss him.

I have LOTS of pictures to upload, but left my camera at my parents house so all that will have to wait.
More good news! He is now consistent in signing book, and he does it perfectly! He has even come up to his dad, and signed book without anyone suggesting it to him. Communication has begun!
We also have a baby on the move! Yes, on the move! I think we may have our hands full with this little man!
Like I said, pictures will just have to wait!
Not sure how long, tomorrow I'm on my own, and I'm a bit scared!

Wednesday, April 7, 2010


Alex had a C1 C2 subloxation. They realigned his vertebra, and all is well. Really! Well! his neck is fine! Doctor spiner took the brace off, and said to call if he gets locked into one position. Otherwise we wont see him again!
He fell almost 3 feet onto his head, and he is going to be fine!
No traction, unless he locks in place, just stretches, and strengthening his muscles.
Everyday he had on the brace was like three days of not using his muscles. So 12 days of weakening.
He is in a LOT more pain with out the support of the brace. A LOT. Lots of crying going on. I'm so sad for him and so happy too!
I did not think I would get everything I was hoping fo! No traction, no hospital stay, and brace off! Really?!?! I get it all?!?!?!
Such a burden lifted!
Thank you to everyone who has had ALex on their minds and hearts, and me too! I mean it!
Better go, Alex hurts, but it is going to be ok!

a peice of cake............

Alex should have been coming out of his heart surgery right about now.....That would have been a piece of cake.
At 3:30 today we go see Doctor Spine. He will look at the Saturday xrays after the realigned Alex's spine, and maybe take more pictures. Then we will know if we get to come home with the brace, or go back into the hospital for traction. I found this blog with a little girl who needed traction when she dislocated her vertebra. Click here to see the picture. I just can imagine Alex having to lay there like that, for who knows how long. I cant explain to him what is going on, he just wont understand.
I wish today was heart surgery day.
I dont know what else to say.

Monday, April 5, 2010

Especially Special Needs......

That's what Noah said Alex is right now, and he is right.
Sometimes Alex seems so sad, but maybe hes just tired. I think the Valium he gets before bed, can have lasting effects throughout the day.
I cherish the moments when he plays, and things are as close to normal as possible. I want Wednesday to be over, and to be home with all my boys, and I want him to feel better.
It makes me think of all those mommas, and sick babies in the hospital, who have been in the hospital for weeks.
Somebody cut us a break, cause our especially, special needs kids just want to be happy. So do their mommas................

Sunday, April 4, 2010

I cant believe this happened.

In ER getting ready to go by ambulance. In ambulance.
He looks so scared.

but was so tired. Waiting to see neuro team. Still so tired, and cold.

Asleep in PICU. Brace on, head aligned, but still favoring his left side.

First smiles since accident, Saturday morning.

Home from hospital, with hospital hair, washing hospital off!

Easter Sunday, playing as best he could.

Crawled through the door! First crawls since accident.

Back at one of his favortie windows, yes there is a screen.

Doesnt seem like a good idea to me with a C1 neck injury, but at that time no complaints of pain.

I want to not feel guilt and say accidents happen, but accidents is when your child opens the door and then falls, not when mom, protector leaves the door open. I might as well hung a neon sign outside saying this way Alex!! I think if Wednesdays appt goes well, and I hear Alex will be ok, go home, I can let go of some guilt, but for now I will hang onto it thank you very much. I want to relax and sigh and say we are home, but the thought of the doctor sending us back to the hospital on Wednesday is like a growing weed in my heart. Alex is another boy in the hospital, and I am a mess with him in pain, scared, and my other boys at home. Obviously what is best for Alex is what we will do, what we have to do. The weight of this thought is such a burden. I am constantly stretching and turning Alex's neck. One of his therapists came out tonight, showed me some things to do, and told me not to do it too much or I would make his other muscles sore. So I have to relax a bit, and hope. Ugh, I hate hope. I like to pretend I'm in control instead.
The sounds in the PICU are much the same as the sounds in the NICU. I knew the sound of the portable xray machine before it passed by the window. The alarms, the nurses laughing in the midst of all the tragedy. I hate it all. So does Alex.

Friday I packed a lunch and my mom and I took the boys to the park. It was the perfect day, going into the perfect weekend. The first Easter Alex could really enjoy. One minute the nice breeze was flowing through the house, I was making baby food, and I heard Alex crying, I started towards his room, then heard the cry coming from behind me, I turned and saw those opened sliding glass doors, the ones that will soon lead out to our deck, but right now, lead to a 3 foot drop onto dirt. Soft dirt. I did not see Alex fall, but I'm pretty sure he just crawled right out, not knowing what would happen. Once at the ER the doctors could not really figure out what was wrong, they ordered xrays of his arms, legs, ribs, and head. While we waited on those I noticed that Alex would not turn his head straight or to the right. I told the doctors and a CT of his neck was ordered. This is when we heard that his C1 vertebrae was fractured. Had a big storm not been right on top of us they would have airlifted him to Peoria, the top Neuro hospital in central, south Illinois. We took the 1 hour 45 minute ambulance ride to the hospital.ALex was so tired from crying for two solid hours, and it was his bed time. The neuro doc that read his CT said he was not convinced it was a fracture. We finally got to our PICU room. Alex slept as best he could among the blood pressure checks, and nurses laughing in the hall. The next morning after getting 45 minutes of sleep, I saw Dr. "spine" who called it a dislocation of C1 vertebrae. He said he wanted us to stay in the hospital for therapy, and I lost it. Ugly cry lost it. He asked me if I was comfortable doing therapy at home. I told him that's all I ever do. I then said I want to do what is best for Alex, and if staying there was, then we should stay. Obviously if the doctor didn't think Alex should go, it wouldn't have been an option. We came home Saturday night, tired, and Alex in a lot of pain. The Valium has helped him sleep at night. Today, the pain is still there, but he had quite a few moments of playing and being happy. I know, that he would have missed out on these moments had we stayed in the hospital, and that is therapy in itself. I have been doing lots of stretches on his neck, and walking him around a bit. Our appointment with Dr. "spine" is Wednesday, if he is happy with the improvements we go home with orders to wear the brace for a certain length of time. If he is not happy with the improvement we go back into the hospital and will endure traction. This is when they hang weights from your head to realign things. I cant even imagine Alex going through that. There will be an update Wednesday.I am so thankful that we are all sleeping in our beds, under the same roof, and even more grateful that Alex is going to be ok. C1 vertebrae is protecting the part of the spine that controls breathing. This could have been so much worse.

Friday, April 2, 2010

Alex had an accident

Update: 9:30am Saturday: The doctor came in while I was on the phone with Jessica. She text me that the doctor wants them to do therapy at home and they are sending them home sometime today. If Alex shows no signs of improvement by Wednesday, surgery may be needed. Update: 6am Saturday: Alex has slept as good as one can in a PICU with alarms, nurses laughing, blood pressure checks, etc. They will be doing more x-rays this morning to see how the vertebrae looks after setting head mid line. They will also talk with neurology this morning. Update: 1am Saturday morning: Jessica says that Alex has been sedated and his neck is stabilized in a brace. The sedation went well. Update: 11pm Friday night: Jessica just text me that they are transferring Alex to the PICU (still at the Peoria hospital) because he either can't or wont move his head to the right. They are going to sedate him and try to relax his muscles. She said if that doesn't work then they will do "traction" (which I don't know what that means). Pray. Original Post: Hey ya'll. This is Jessica's friend Myssie, William's Mom. I just got off of the phone with a very distraught Jessica... Jessica said that she was checking on the progress of the deck in the backyard. She opened the back door to take a look while Alex was sitting in his highchair. She decided to leave the door open to let the breeze go through her house and forgot to close it when she got Alex out of the highchair. Alex fell out of the back door. I am not sure how far he fell but he has a broken vertebrae in his back (Jessica can't remember which one) and they are transferring him to a hospital in Peoria so that a neurologist can examine him. Those were the only details that I got before she lost phone service in the ambulance. Please keep sweet Alex in your prayers and thoughts...Jessica too. I will update when I find out more...