Monday, March 31, 2008

Look how strong he is!

He will actually stay on his belly for about five minutes at a time now. It took three months to accomplish this, I am so proud of him.
All done.

Putting his toys in his mouth!!!!!


Showing off his break dancing skills



Alex doesnt sit in this very long, but he tollerated it long enough for the picture.




Sunday, March 30, 2008

I can do this.

Last night I was reading Goodnight Moon to Alex as we always do before we put him to bed, and every time I turned the page and began to speak he would look up at me and smile.
For the first time I really felt like I can do this.....................

Saturday, March 29, 2008

Spring Break

We had a busy, but relaxing spring break, I thought I would share the highlights. Alex has started to bring things to his mouth, especially his spoon. Noah cut his hair when we were playing hide and seek in the house and he found himself in a hiding spot with scissors, so we had to shave his head. We had a birthday party for Joel and his friends at the park, and the boys got to play in the Easter snow.






























some new things Alex is doing

I haven't been posting as much because the older boys have been home for spring break, and so my time has been limited at the computer, which is probably a good thing, I know I spend too much time here.
While I am here I thought I would give an update on some of the new things that Alex is doing:
Beginning to eat textures, and loving them!
Puts himself to sleep, talks, fusses, then goes to sleep.
holds his head and shoulders up on the floor for longer periods.
holds his pacifier in by himself!!! This is a huge accomplishment! HUGE!
Showing signs of rolling over in the very near future.

How could I forget........
He is also saying "B" "G" "A" "U" when he feels like it.

Thursday, March 27, 2008

Alex the Great

Just wanted to let you all know that to the right of the page under Alex birth story is a link "stories from the NICU" I copied all the updates from our care page "Alex the Great" and posted them on the blog so I could have the whole story in one place. So those of you that got all the updates when he was in the NICU, you have already read these, but I know many of you are new to our story, and missed out on those early days.
Adam posted the majority of them as I was always at the hospital, so it was nice to read them. I had forgotten some things, I'm so glad we had the daily news written down since I didn't get much footage on film.

So this link is for me, and for anyone interested in our early struggles, and so you can see how far Alex the great has come in his short life.

Wednesday, March 26, 2008

Alex Pruitt day of life: 6 "as said in the NICU."



This was taken when Alex was 6 days old (Sep 13, 2007), he had just come off of the oscillator, and put on the vent. He was also taken off the medications that were keeping him sedated so he was starting to open his eyes, and look around. This also meant that he could cry, when a baby cries on a vent it is silent, and hard to watch. The first time I left him in St.Louis to come home and visit my older boys I started talking to him and telling him that I was leaving, and he started to silently cry, that did not help me leave. I left in tears. I still had not held him, and would be another 8 days before I would. Because he had pulmonary hypertension, any handling could have made it worse, so he was a minimally handled baby for two weeks.


The alarm you hear in the background is his vent alarm, I would hear that noise in my head when I would come home. Since I was able to sleep in Alex's NICU room I heard vent alarms, and monitor alarms around the clock. They say there is such a thing as NICU psychosis, I believe I was there.


I wish that we had taken more video of him in the NICU, but at the time I did not want to remember any of it, so this is all we have.

Tuesday, March 25, 2008

Busy day, little sleep.

Last night Alex woke up quite a few times screaming a scream that I have never heard before. I immediately wondered which of the 90 some odd things that are associated with RTS that it could be. I was real close to putting him in his car seat and going to the ER. Yes, baby's cry sometimes, but I freak out with Alex. I used to be one of those moms that only went to the doctor for well child checks, now I freak out over a new scream, and want to go to the ER for an upper GI or something.
Anyway I took all our boys to the doctor since Noah had been running a fever off and on for a few days anyway, and it never hurts to have Alex's ears looked at. Everyone is fine, both boys had strep tests because their throats looked pretty sore, and they were both negative, Noah and Joel probably have a virus, but they are running around and acting completely fine. Alex is great, ears are good, lungs sound crystal clear (THANK GOD). Maybe he is teething, maybe he had gas, maybe he had a dream that he was falling, I don't know.
We gave him Tylenol before bed tonight and he put himself to sleep within ten minutes. Hopefully that is a sign of a good nights sleep for all of us. I hope because Alex hasn't slept well since Sunday night.

I am going to post some video of Alex soon, I'm just too tired to do it right now. I found some video from the NICU, and I also want to share him in his bouncer. HE LOVES IT! He bounces, and smiles, it makes me laugh out loud to see him intentionally bouncing, sometimes he will even talk about it. So stay tuned for some real life Alex!

Sunday, March 23, 2008

Thankful
















Today I thought would be a hard day watching my boys walk out the door for church without me on Easter Sunday. It wasn't though, today I felt very thankful for everything. Alex is home, he is healthy. I will never take that for granted. I will never forget what it was like to live in the NICU for six weeks away from my other boys. Tonight Adam and I sat on the couch with Alex laying between us, and I remembered longing for just that moment in the hospital.





Today wasn't hard, I'm am thankful for Adam who has been a pillar of strength when I have been an absolute mess. I am thankful for the resilience of my older boys who have not been affected by such a change in all our lives, I'm am thankful that Alex is so strong, he has come so far in six months, and I know he will go so much further. I am thankful that I have a God that loved me through my anger, didn't turn His back when I was screaming at Him on the inside, sent His only Son to die for me, for my boys, for you.............................

Friday, March 21, 2008

Good Friday






















After getting out yesterday to swimming lessons I couldnt help but get out again. it was so nice out, and the boys had been asking to go to the park. It is about a ten minute walk to the nearest park, so the boys road their bikes, and Alex in the stroller. It was the first time I had all the boys on an outing together, and Alex's first walk outside of the halls of Cardinal Glennon Childrens Hospital.
the boys ran off energy for an hour, then we came home. Alex smiled every time the wind blew in his face, and he seemed to really enjoy looking around at the trees and sky.
This morning we talked about what Good Friday is all about, first I asked the boys to see what they would say. Noah said we should be thankful for the food Jesus gives us, and Joel said when you die your heart falls out. So we talked about how Jesus died on the cross, and because he did this we can go to Heaven one day. I didn't get much deeper than that, but they seemed to understand as best they could at their age.






Thursday, March 20, 2008

Another world.

Alex got to see another world besides hospitals, doctors offices, and therapy sessions.
I signed Joel up for swimming lessons in the morning because the evening class was already full. This meant that I had to take Alex out. He did so well, and it seemed ok to do since he wasn't around a lot of people, mainly other kids.
Since he has had a cold and handled it well, it wasn't so scary exposing him to the elements. I'm not sure we are ready for the mall or a crowded nursery, but it was so nice to get out, and show him off in person. He loved to look around at the huge pool, and the splashing. Then he fell asleep, he is such an easy baby.
Joel did really good at swimming, a few months ago he hated it, and now he jumps in, goes under without any fight.
Did I mention how nice it was to get out?

Wednesday, March 19, 2008

Bed bugs?


Alex has been waking up every night for about a week around 11:00, he cries then goes back to sleep with a few pats on the back. I took him to the doctor today because he normally sleeps well, and he has had two ear infections already. His ears looked really good, so it is a mystery why he wakes up around the same time, then sleeps really well the rest of the night, maybe it is bed bugs biting. I'm glad his ears look good, but I hate not knowing what the problem is. Normally Alex sleeps from 9:30 until 8:30 without a peep. Yes, it is nice.
Don't worry he gets a early morning feeding (a bonus having the g-tube).


fearfully and wonderfully made











Psalm 139:13-16"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."

Tuesday, March 18, 2008

New toys

Here is Alex enjoying his new bouncer. He sits in about 20 minutes at a time. His legs aren't quite long enough to get a good bounce going, but he gets a few bounces in with his toes.





Monday, March 17, 2008

baby Joshua

http://www.youtube.com/watch?v=7wB8cYug0WI

Worth it.

God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.Psalm 46:1-3


It's gonna be worth it, it's gonna be worth it,It's gonna be worth it all.
And even though I can't understand why this storm still blows
And even though I can't hear Your voice, I love Your rain
Even though I can't see the way up ahead, I know that You lead
Even though I can't feel Your presence now, I know I believe
It's gonna be worth it, it's gonna be worth it,It's gonna be worth it all.
Even when my heart is torn, I will trust You Lord,Even when I feel deserted, I will trust You LordEven in the darkest valley, I will trust You LordAnd when my world is shattered
And it seems all hope is goneI will trust You Lord
It's gonna be worth it, it's gonna be worth it,
It's gonna be worth is all.
I don't understand Your ways Oh but I will give You my song
I'll give You all my praise
You hold onto all my pain
And with it You are pulling me closer
And pulling me into Your ways
You're gonna be worth it, You're gonna be worth it,You're gonna be worth is all, I know.

Even Though - Christa Leis & Bruce Ellis
Yet I Will Praise - Andy Park
Worth It All - Rita Springer

Eva Janette

Happy birthday Eva Janette! Please pray for this sweet baby girl, her momma, and her family.
She is coming into the world at 7:30 central time. PRAY! PRAY! PRAY!

Sunday, March 16, 2008

A mess of thoughts.

Most of the time things are so busy that I dont have time to think too much about the reality of RTS, when I am with Alex I dont worry about him, he shows me that he is going to be ok. Then there are these small but terrifying moments when I wonder if Alex will talk to me, will he understand what I am saying to him, when will he walk. Does he know I love him so much.
I found a list of symptoms on a crazy internet search and I believe there were 92 possible complications or characteristics that go along with RTS. There isnt anything I like about this, I wonder about his future, and will I be able to give him everything he needs so he can become everything he has potential to become.
We live in a cruel world, one that looks past people who have special needs, in fact they look away, try not to see, for many people it is as if they dont exist.
In these moments I become overwhelmed, I feel un able, I feel alone.
So much has changed, relationships have changed, routines have changed. Our life has changed. I dont understand why everything has changed.
I know I am not alone, I have met so many mothers going through the exact same thing as me, they are further along in their jouney, and able to tell me things get better.
I have met so many mothers who held their sweet little sons and daughters on their way to Jesus, and I tell myself, you can not be sad about this, you have Alex here with you. Still I find myself grieving, grieivng the dreams that I had, plans that I had made.


Im still out in the water off the coast of Holland, I see that Holland is good, I love the people there, but I dont want to go there. For some reason I am content on treading the stormy waters, even though Im tired, and I know I could rest on the shore.

WELCOME TO HOLLAND
by Emily Perl KingsleyWelcome to Hollandc1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." " Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.


I haven't made it to Holland yet, my plane crash landed. No one around me can help, they never crash landed before, there flights have always made it to Italy, their life vests don't fit me, and no one has a rescue boat, but they say they will pray for me. I'm treading water, and the waves are relentless, sometimes I am swept under by the waves with all the tests, appointments, and pain my son goes through. Sometimes the wave of grief pulls me under for the longest time, so deep I cant see the light at the surface.My friends and family are flying above, looking down at me with sad faces, they don't know what to do or say, sometimes they don't say anything at all, I watch them living as if everything is normal, I guess it is for them, dont they see me drowning down here. Even God it seems just watches me fight to keep afloat. I can see Holland's coast, its not too far away, I know that its "coast guard" will be what brings me to my new home. Thank you to all of you, you know my deepest pain, you share my broken heart, I see hope in all your stories. The strength that me and my family will gain, the lessons to be learned. Right now I'm still off the coast treading water, the waves are still too high, but I will keep fighting to stay afloat, and I will be home soon.
By Jessica Pruitt 2007mom to Noah 6, Joel 3, Alex 4mo RTS

A bit of info.......







So I have had some people ask me how many surgery's Alex has had, so I thought I would give you a quick list of his medical history to answer any questions:

born with pulmonary hypertension-resolved
on vent for three weeks
malrotation of the intestines-surgically fixed at 21 days old
reflux into his right kidney-only phase two we are hoping he grows out of this (pray!!)
Acid reflux controlled with medicine
G-tube placed at 4 mo
brain ultrasound-normal
MRI on spine, NORMAL!!!! (originally thought this to be tethered)
has a small PDA in his heart-no one is worried ( has had 4 echos)
His thumbs are angulated-need to be surgically fixed
It think that is it.....................
With all this, I would say he is doing really well, all 20 pounds of him.

Saturday, March 15, 2008

Birthday Boy

Today Joel turns 4.
On my boys birthdays I always ponder the day of their birth. With both my older boys my labor always begins late afternoon, so I know that getting a good night sleep before the arrival of a baby is not likely. My labor started late Sunday afternoon, and I humored Adam and watched Lord of the Rings with him "the things we remember". then everyone went to bed, and I laid on the couch and for some reason watched the weather channel. Around 3 in the morning I woke Adam up, and we drove to the hospital. We walked the halls for an hour, and the contractions got worse. I voted for the epidural, and as soon as it was administered my blood pressure really dropped, so I never got the medicine, that's right, nothing was numb, not even a toe. Joel was 9lbs 10oz, and 22 inches long. Lets just say I could have used an epidural.
Joel has a sweet spirit, always wants to share, he just wants to have fun, and play with anyone. He is a little shy, and a little ornery. He loves to read books, play board games, and play cars with his grandma. It has been a wonderful, fast 4 years. I love you Joel, and cant wait to see the wonderful Godly man you will become.