Hospital woes

I usually have strong opinions when it comes to the care of my daughter.  I will do whatever it takes to get her what she needs and to keep her from undergoing what I don't think she should. And I have an opinion on most things.  So what happened?

How was it that at 3pm on Monday the nurse practitioner turned to me for my opinion and I failed to give one?  How was it that I was quiet and looking at my baby girl while she deliberated?  Soon, we will have to pay the price for my silence.  But the price is payable. 

Because I was unsure of my ability to take care of this darling little girl, we were sent by medical transport to Children's Mercy.  We spent the night, I took care of her the entire time and then we were released on Tuesday.

She had a cold.  Unfortunately, the Mucus was so thick and so prevalent that she couldn't seem to cough it out without racking her body so hard that she vomited up her meals as well.  Not all at once, which almost would have been better, but over the course of an hour she would hack and cough and vomit until everything was out.  She had to be kept upright at all times and so Joseph and I took turns sleeping with her on the couch.

By Monday, she was dehydrated and over the course of the night before she had had several scary episodes where she would struggle so hard to breath that she was kicking her legs to help.  Every time we were about to take her in or call an ambulance she would cough hard and then breathe fine again going back to sleep.  She needed to see a doctor to rule out pneumonia etc.  So I took her in.  It wasn't pneumonia, it was a virus.  A cold.  But she was having a bit of a hard time.  I wasn't completely confident in my ability to do what needed to be done.

Going to the hospital might have been the wise thing to do.  What if it had gotten worse?  The doctor thought it would give me a break.  HA!  Having a sick child doesn't get easier in a different environment.  I wasn't about to wait on the nurses to come and suction her, they were busy and couldn't hear her.  They would wait until the monitors said that her o2 was way too low.  I couldn't sit and wait for that.  And so we had an exhausting, but better then the day before day, because she was improving.  Finally, they decided that since I could keep some food and fluid down her, and I was doing all the suctioning and feeding anyway, that I could take her home.  I could take care of her.  I was doing it.

I'm glad.  I'm glad we are home and I'm glad I'm with all my children.  I'm sad that it took being in the hospital for me to realize I could do this.  I'm sad that there is a huge bill coming. . . but we'll climb that mountain when we come to it.

Living and Learning

I am always amazed at how much our little ones pick up.  We (the kids and I) have been memorizing "The Living Christ" for Christmas and really enjoying it.  So I decided that we should have a Living Christ Christmas tree.  No Santas, reindeers, or snowman, just things that would remind us of what we had memorized.  I sat down and wrote a list.  I got the idea from the Jesse trees and thought it was a great idea.  I took some of the ideas from this blog and others I came up with on my own.  I wanted the ornaments to mostly be things that we could make. Here is a copy of the list if you are interested:

Sew hearts for “Each of us will stand to be judged of Him according to our works
and the desires of our hearts.”

Punch tin stars,
Although we are one among millions the Father sees us as one-

and make a Styrofoam earth ornament (light catcher, tissue paper puffs) "Under the direction...

Cotton ball sheep-
 He ministered among his Other Sheep
We are also lambs in His fold and should listen to his voice

Seed ornament, or acorn
"He taught the truths of Eternity. . . the potential for the sons and daughters of God in the life to come"

Peace and goodwill- Doves

empty string balls representing the empty tomb

Medical symbol "healing of the sick"

Gold crowns- "Rule as king of kings"

Candles-"eyes as a flame of fire"

Sun-
Countenence shone...

Ocean wave-
rushing of the great waters

ribbon path to Heaven

What makes us happy?

Red gifts
"His was a great vicarious gift..."

nativity ornaments for his birth

Mirrors- our lives reflect the matchless gift, Our lives are the symbol of Christ's atonement

Snow underneath
Hair as white as the pure snow

Angel Moroni
or first vision
In the modern World...

Family picture

Baptism photo

Fruit- "He was the first fruits of the grave"

So far we have many of these, but not all.  I was hoping to make it an ongoing Christmas tradition and re-memorize it every year so that those that were too young this year will still benefit and so that we can keep our thoughts focused on Christ.  Plus, I'm sure in a years time we will all need a review.

I knew my younger children wouldhave a hard time not putting up some of the ornaments, so I decided we could put up our small tree downstairs and they could decorate that one however they wanted.

I was right that they wouldn't be happy.  Some of the ornaments that they were not particularly attached to they were fine putting in the "other" box, but then we came to a Santa Claus ornament the Noah loved.   I explained to him patiently that only ornaments that were related to the "Living Christ" would go on our upstairs tree this year, but he could put it on the downstairs tree.  He said "It does have to do with it".  "O.K." I said "How?"

 My little boy looked me in the face and said, "All things were made by Him, and without Him was not anything made that was made." As you can see, it is now hanging on the tree.  For the Snowman ornaments, it was explained to me that "the hair on His head was white like the pure snow".  And it went on until I think there may have been two ornaments that didn't make it on this years tree. 

I learned two lessons- 1. Mom's are not in charge of everything and 2. Children listen and learn more then you think they do.  And I think that our tree Is just as much a representation of the Living Christ as I meant for it to be with all of my careful planing.  In fact, it may even hold more meaning, because they imbued each ornament with a special meaning to them.

Gratefulness

Sometimes it can be hard to see the good things that surround us because we are focusing on the bad. Sometimes the good can even come to look like it is the bad.
I am on a list serve for my youngest daughter where someone was having a hard time getting what services they felt their child needed on the IEP. They made a comment something like:
Sometimes I think that it would be easier if my child had a disability the was more visible. Because you can't tell that *Bob* has issues just by looking at him I have to fight every step of the way.

Really? I'm sure they were having a bad day. My heart hurts for the moms who read this who have children whose disabilities are far too visible. Honestly, my heart hurts for me. Do you really want to trade places? Because I would give my left foot, leg and arm too in order to have Izy walk, talk and interact in such a way that her disability was invisible. I know we are always looking for better, but I learned an important lesson from this other hurting mom. Focus on the positives. Look for and enjoy what is right.

And so. . .
her gorgeous smile
her squeals of happiness
her ability to find small chocking hazards on my floor by rolling around
her speed at grabbing my plate and almost sending it to it's doom
Her E-I-E-I-O when she sees farm animals (and other random times)
Her patience
Her increasing head control
Her increasing ability to sit
Her enjoyment of jumping laying down
Her ability to bear weight and stand on her legs
Her ability to pull to tall kneeling
Her face plant crawling, pushing with her legs, but ignoring her arms
Her love of food and water
Her love of finger-painting
Her receptive language
The words she says
The joy she brings
Her Cuddles
Her Kisses
Her excitement when she realizes something new
Her interest in watching her siblings
Her loud laghter
Her tickle spots
Her determination
All things that I tend to over look in favor of focusing on the "problems" so that I can help to fix them. I think that it is important to do whatever we can to help her and then sit back and enjoy her in the meantime.

I am truly grateful to be her mom. It is a blessing.

The bird

This is a guest post made by the Lopez children.

Alayna- We were about to start school when we heard a bang on the window.
Evelyn- And we looked out the window and there was a bird there that had knocked into our window. It had blue eyelids that showed when it kept blinking it's eyes.
Noah- And we took a picture of the bird and we could have took a movie of the bird but we did not take a movie of the bird because it was on moms phone and it could have run out of power.
The bird was breathing heavily, but left about half an hour later.

Learning to share

I often tell my children that we are a family and so we have to share and take turns. If you fight over something then you don't get it anymore because people are more important then things. We work together, play together and try to do as much together as we can because, while I know that we will have them forever, never again will they be ours in this same way that they are now.

I have tried to be an example of service and sharing, but I catch myself sometimes acting in ways that I don't want my children to act. Sometimes, I will save back some of the dessert for me for later, or take the larger piece of a meal. I will not play a game with them that I have time to play, because I really don't feel like it. I keep parts of myself and my things back. In looking at this over the last few weeks I have discovered that more then having the talk with my children about being unselfish I need to talk to myself. My children often surprise me with what they are willing to give or to share. Little things like my five year old giving everyone a piece of his pie that he had been saving, and not small pieces either. I watch them serve each other and I hope that they will always carry some of that with them.

Two weeks ago the Lord called Joseph as Bishop of the Raytown ward and today he was sustained. I am learning to share. Of all the things that I have a hard time sharing, my time with him is the hardest. I tend to be very jealous of his time and energies, but I will learn. Like I told the children today after church, it is a wonderful blessing from Heavenly Father to have him as our husband and father and now the Lord is asking us to share him with the rest of the ward. So, slowly I am learning to share graciously.

St. Louis- therapies and daughters

Thanks to wonderful in-laws Isabelle, Alayna, and I were able to run to St. Louis at the last minute in May for a new type of therapy for Isabelle.  It's easier to do therapy when they come to my house and I don't have to pay anything.  Driving 3 and a half hours and staying away from the rest of my family, and paying a large chunk of money is much more difficult to get yourself worked up to.  It took me about a year of researching.  I ordered a DVD of  a workshop and tried my limited knowledge out on my daughter.  She went from complete noodle legs with no resistance to the standing pro you have seen in other posts.  So, I was convinced that it would be of benefit to her, but finding someone within a reasonable distance was more difficult.  At first I thought we would have to go to CA and pay a Huge chunk of money, but i think the Lord led me to this practitioner in St. Louis.

For those that are interested, the method is the Anat Baniel method and it is different from normal PT and OT in that instead of working on the muscles and trusting that the brain will catch on it works on the Central Nervous System and trusts that the muscles will catch on.  She uses very gentle repetitive but slightly varied movements to teach the brain how to move.  We have learned with Isabelle to celebrate every "inchstone"  We see a new one at about once a month, maybe if we are really lucky once per week.  In the 3 days that we were there we saw 3 "inchstones".  She started catching herself with her hands when falling from sitting, she started coming up into tall standing while holding on to his arm completely on her own, and she uses her arm to help sit herself up.  I have studied the method as much as I can without spending the major $ for training classes.  I have been working with her at home as well and she has started to push off of me with her legs and pull her other leg up to be by the first one in a crawling position.  I really want to take her back.  So I'm working on getting some grants.  (:  In the meantime I will continue to do what I can with her.

One of the best parts of the trip was that Alayna got to come with me.  We shopped, talked, laughed, read and listened.  She is really growing to be a wonderful young woman and I am so grateful to be her mother. 

A lost Noahism

I was clearing off my desktop and I came across this definition of Santa that I just had to share.

Noah-A man was walking along.  He wanted an octopus for his dinner, he got really fat and really old.  That's how we got Santa.

So the story is great, but what I want to know is Where is the Movie?!!

Our budding music star.  He is too cute to keep to ourselves.

Easter Firefighter 5th birthday party

This is the Easter Bunny's house that mom built.

This is the FIRE on the Easter Bunny's house that mom built.

These are the firemen putting out the Fire on the Easter bunny's house that mom built.

These are the candles looking even more firey, that the firemen are putting out, on the Easter Bunny's house that mom built. (OK, so I had some help)

And THIS is the Noah putting out the more firey fire, helping the firemen, on the Easter Bunny's house that mom built. (The decorations were made by Noah, Evelyn, and Alayna)

 The party was a lot of fun.  We had a "Search and Rescue" were we taped family faces to the eggs.  We practiced aiming our "fire-hoses" and squirted water into the other bucket.  Finally, we practiced escaping a house through an obstacle course.  Then after Cake and Ice cream, we went to the firestation and toured it.  We learned a lot and had a blast

Isabelle is doing AWESOME standing!

two fingers per side for balance

 Look Ma, No hands!

One Long Morning

Seizure.  It's a scary word.  Scarier by far is looking into your little girls eyes and watching that initial look of fear and distress, of pain and uncontrollable tightening turn into glazed eyes that look right through you as her body convulses and twitches. Two weeks ago last Thursday I felt my walls crumbling.  As she continued to seize I clung to the buoy of hope that as she was told in a blessing everything would be all right.  Waves crashed over me and I tottered, tears squeezing out before I finally righted myself again.  Does she know that I'm here?  I know I can't do anything medically, but does holding her, singing to her, loving her fiercely make a difference? Surely she can feel somehow that I am there, surely she is comforted when, as she comes out of it, her mother is rocking her and talking to her.  Strangely enough the walls that I had put up against the fall of tears cracked and large holes let spurts of water through after the seizure had finally come to an end.  We tested her blood sugar.  Nothing.  We decided to go in the next morning for a Cortisol blood test and that is where this post really begins.

My 2 yo is Not a morning person.  Unless its 1 or 2 am and she hasn't gone to sleep yet. :)  So she and I weren't thrilled with the idea of going first thing to get blood drawn.  We meant to leave at 7am, but my hubby had an appt and so I had to bring all of the 4 younger kids.  So the only way we got out at 8 was by telling the kids to just get in the car and not worrying about some of them being half in pj's.  We went the long way ;) but finally got there.  Izzy had stayed asleep when I put her in her carseat, and throughout the drive.  She stayed asleep as I took her in.  I gave the keys to Alayna and had her lock the door, because after a few minutes of being locked the car arms itself and if anyone tries to unlock it without the keyfob the (very Loud) alarm will go off, and it was important for them to be able to get out if necessary.

The blood draw office had to call and get the orders for some genetics tests that we had been trying for a year to get, but she is a Really difficult stick  So we had never been able to get enough blood. As we went in I asked if I could hold her, and assured her I would hold her tight.  She agreed.  I tried to gently wake her so that she wouldn't be woken by a needle in her arm, but she just snuggled closer and popped her thumb in her mouth.  I struggled to know what to do but finally felt to let her sleep.  They found a promising vein and went for it.  At first it seemed like she was going to wake up and for a while the blood wasn't coming, She stirred and cried a bit in my arms before sucking harder on her thumb and settling back to sleep.  Then the blood started to come and we got enough for all the tests we were trying to get.  I was estatic.  As I left the office holding my sweet, peaceful and still sleeping little baby I said a prayer of thanks. 

All of this had taken a little longer then I had originally planned on and so I went as quick as I could down to the car.  I knocked on the window and Alayna came up and tried to open the door. BEEP- BEEP- BEEP- BEEP-  The kids looked at me in dismay.  I mimed turning a key and then clicking a keyfob.  Then I backed away from the car.  Too late.  Even the baby who had slept through everything, couldn't sleep through that kind of noise.  Finally, the beeping stopped and I went up to the car to talk to Alayna.  She told me with tears in her eyes that she couldn't find the keys.  I told her to keep looking.  She looked so lost and forlorn she shrugged her shoulders to show me she had no idea where to look.  I pointed down.  Noah, who was sitting next to her looked down and . . .BEEP- BEEP- BEEP- BEEP- he kindly tried to unlock the door for me.  In about five more minutes I could barely hear Evelyn yelling that they had found the keys.  Ten more minutes of agony followed while Alayna tried desperately to pry them out from in-between the back seat cushions- occasionally punctuated by the Beep! of the doors locking (that was the only button she could reach).  Finally, she raised her arm in triumph and Click click the doors were unlocked.  I pulled open the back door and was met with a two plastic sacks tucked together.  

"What's this?"

"Noah had to go to the bathroom."

"OK, did you take him?"

"No, I didn't want to get lost.  Here. I had him use this sack."

:"What?!"

"Well, I didn't know what else to do."
"OK"  I take the sack and rush to the trash can hoping that they empty them daily.

Finally time to go.  Except. . ."Noah still has to go potty."  Said Alayna.

"I thought he went in the sack?"

"Well, just #1."

"Ooooh.  OK."

So I carried in my Pajamaed, shoeless, five year old.  We did what we had to came back and decided that I had to feed Izy before we left.  So I did.  I must have been a bit to frazzled and fed her a bit too fast because it came back up on me.  Lovely.

By this time it was only 11 am, but I was ready to crawl back into my bed and sleep for a day.  It was absolutely a long morning.

I have to say that having Izy sleep through her blood draw was worth every bit of everything else.