Wednesday, March 30, 2011

A Happy Birthday Message From Noah...

Dear Holly,

Here is a special message just for you on your birthday.  I miss you so much and I love you.

Noah (& Juliana too)

P.S. At the end of the video, Juliana put her mouth on the camera trying to kiss you.

Friday, March 25, 2011

Grandpa, This Tantrum Is For You...

Juliana has started throwing tantrums if she doesn't get her way.  It's magical.  Grandpa Jim (my dad), who Juliana has wrapped around her finger, doesn't believe that she could ever do anything like that.

This is from this past Wednesday.  I'll set the stage.  Juliana didn't want to leave Theresa's when I picked them up after school.  On the 3 minute drive home she proceeded to scream, and then something hit me in the back of the head.  I said, "What was that?"  Noah answered, "Sister's shoe."  Juliana had taken her shoe off, and thrown it.  I realize the accuracy of a 22 month old is not good, so the fact that it hit me in the back of my head is pretty amazing.

When we got home, I told her she was going to go into time out after I took her coat off.  This was what I got.  Notice she only has one shoe on. 

 During this episode, Noah and I went upstairs until the screaming was done.  When she stopped screaming, her coat was off, and she was sitting in time out. 

Then, she wanted some animal crackers when she was done in time out.  Unfortuantely, I didn't put them in the right container.  This is what I got.  Again, notice the shoes.

Noah and I again went upstairs until she was done screaming and re-seated in time out. 

So, Grandpa, what do you think now?  Is that enough proof?

Saturday, March 19, 2011

It Is What It Is...

I hate the saying, "it is what it is".  What does that even mean?  Even though I can't stand it when people say it, I have found that I have been saying it a lot this month.  I don't know if it's because I'm frustrated again or if I'm giving up or if I've just resigned myself into a form of acceptance.

This month started off with the call to 911 and a trip to the ER.  I still close my eyes and see Juliana purple and limp, not moving at all.  It makes it hard to fall asleep.  We followed up with our pediatrician like we were told to and he told us what to do in the even that she had any more febrile seizures.  This week we followed up with her neurologist at Children's.  He's not sure that she had a febrile seizure.  In fact, he's not sure what happened to her that caused her to turn purple and stop breathing.  Great.  I wasn't happy about Juliana having febrile seizures, but at least we had a diagnosis, something to work with.  Now we are back to square one, the unknown.  Yay.

We ended the week with a visit to Juliana's GI doc at Children's.  I already knew he wouldn't be pleased with her weight.  Her neurologist showed us all her weights plotted out on her chart, and so I already knew what was coming.  Her weight is plateauing again.  She weighed in at 20 lbs 8 oz.  In 3 months she's gained less than a pound.  I tried to make the case that she has had a cold for the past few weeks, but that didn't really do much for the doctor.  He's increasing the dosage on her appetite stimulant, and I have to get her evaluated by a therapist from his feeding clinic.  Yay, more appointments, and this one may turn into a weekly one, so tack that on to the rest of her therapies.  Juliana's GI doc thinks that she gets "fatigued" in the mouth and that's where her poor weight gain stems from.  Ryan and I disagree (we have watched her chew on ice cube after ice cube after ice cube), but since this is one of the last things on his list of oral/motor problems, we are going to humor him so that he will rule it out and move on. 

Normally after these disappointing visits, I get angry and discouraged, but yesterday when Laura (our speech therapist) called to get our concerns for Juliana's annual Early Intervention meeting and asked how I was doing after the doctor's appointment, my response was to shrug and say, "it is what it is".  What is that about?

Friday, March 4, 2011

Never Been So Scared...

Yesterday, Noah and I were sitting in his room playing a Veggie Tales matching game on my laptop while Juliana was downstairs with Suzy, her Occupational Therapist.  All of a sudden Suzy yelled my name.  I ran downstairs and Suzy was bent over Juliana.  Juliana had thrown up an orange liquid.  I knelt on the floor next to her and started to tell her everything was okay, when she started to make a strange gargling noise.  Her face started to turn purple and Noah began to cry and ask why his sister was turning that color.  We thought she was choking on something, but she hadn't had anything to eat.  I called 911 while Suzy started the Heimlich manuever.  While I was on the phone, I tried to get my finger in Juliana's mouth to see if there was anything in there that she was choking on when her jaws clamped down on my finger, she began to foam at the mouth and shake.  I was able to prop Juliana up and Suzy got her airway open a little bit but she was very purple, very purple.  2 policemen ran into our house and put Juliana on her back, tried to get into her mouth but they couldn't do it either.  Then the ambulance, fire truck, and 4 more police cars arrived.  The paramedics ran into the house.  Juliana was still purple but she was limp at this point.  The paramedic picked her up and ran her to the ambulance to work on her.  Suzy told me she would stay with Noah and I ran out the door to the ambulance where I was bombarded with questions.  I was shaking and bordering on tears but I was trying to keep calm for Noah because he kept asking "what's wrong with my sister?"  I couldn't remember what medicines she was on or the doses.  They had me come back into the house to get Juliana's medical history, and they were asking Suzy about what she was doing with Juliana.  Then the paramedic came back in and said that she was stable but had a fever of 102 so they were going to take her to St. Joes immediately and I could follow with Noah when I was done with the policemen. 

When I was done answering all the policemen's questions, they gave me directions to St. Joes because I didn't know how to get there.  I grabbed my wallet, keys, cell phone, and Noah.  I called Ryan and told him to meet us there and gave him directions as well.  Then I called my dad and let him know what happened and called my brother in law and let him know what happened.  I made myself be calm for Noah on the drive to the hospital.  Noah kept saying, "I hope Juli is okay, Momma."  I told him that we needed to pray for Juliana, so we prayed the whole way to the hospital. 

Ryan arrived at the hospital at the same time as us.  I filled him in on what happened, since I didn't really let him know what had happened.  When we got to the children's ER, we found Juliana alert, with a cup of apple juice, a stuffed bunny, and sitting on an orderly's lap.  "This is not what she looked like when the paramedics left" I said half crying.  They took us to a room and we saw a doctor and gave him her medical history.  Because she had a fall a couple days ago they wanted to do a chest x-ray and a CT scan along with blood work and urineanalysis.  Juliana was in good spirits for most of this, until they got to the IV.  She screamed and screamed.  Then she wanted to be held by me. 

I held her, and then they came to get us for the x-ray and CT scan.  During the x-ray, I had to put on a lead coat and while Juliana was strapped into a baby chair screaming, I had to hold her arms out of the way.  During the CT scan while Juliana was strapped down screaming, I had to put on a lead coat and hold her head still.  It was horrible.  Then we had to wait and wait.  Noah was getting antsy.  It was almost 8 pm, he was tired and hungry and worried.  Juliana was getting antsy.  Ryan let her walk the hallway and rolled her IV behind her.  Then, the doors opened and there were Frampa and Framma!  They had driven down to get Noah and bring him home for us.  All of us were happy to see them.

Noah, my mom and Ryan went home (Noah didn't want to leave without a parent) and my dad stayed with Juliana and I.  It was a little after 9 when the doctor came and told us that all of her tests were normal and all of her scans were normal and that we were going to be sent home once the paperwork was done and Juliana's IV was taken out (Juliana was asleep at this point).  He said that Juliana had a febrile seizure and she could have them now anytime she runs a fever until she is 4-6 years old so we need to have tylenol or ibuprofen on hand.  He also told us to follow up with our pediatrician and neurologist.

I have never been so scared in my life.  I don't think I even slept last night.  I am so very thankful that Suzy was with me to help me get Juliana's airway open.  I am very thankful that 911 responded so quickly.  I am thankful that God helped me to remain calm in front of Noah.  I am thankful that my parents came down.  I am thankful that my little girl is alive.

Thursday, March 3, 2011

Happy Birthday, Noah!

My baby boy turns four years old today.  Boy has time flown by!  I remember the day I had him.  It was a Saturday and my parents were going to come down to help us get organized, since Noah wasn't supposed to arrive for another 3 weeks.  Ryan and I were both sick and miserable.  I had a bad case of bronchitis and Ryan had a really bad cold.  I started bleeding that morning and the doctor on call told me to come in and get "checked out".  When we got to the hospital I was having contractions but I wasn't feeling them.  According to the monitor they were pretty regular, so they had us walk the hallway and drink water for an hour.  Then the doctor checked me.  He told me that he was going to send me and I breathed a sigh of relief (being so sick there was no way I wanted to go through labor when I could barely breathe).  He winked at Ryan, took out the little hook on a stick and broke my water.  "I thought you said I could go home!"  I yelled.  "Well, I was kidding, you're going to deliver today," and then he walked out.  I looked at Ryan in disbelief and got on the phone to call my parents.  Less than 12 hours later, I was holding a beautiful baby boy in my arms.

If you have ever met Noah, you know why I call him my "Ray of Sunshine".  It's rare for him not to be smiling or happy.  He's like a breath of fresh air when he comes into the room.  Noah loves to read Bible stories and pray.  We were at a birthday party recently and all the kids were eating except Noah.  When I asked him why he wasn't eating his pizza, he told me no one had prayed yet.  We just spent the last two weeks reading the same story about Joseph and his coat of many colors and his dream interpretations at bedtime.  When Noah hears a Bible story that he likes, we read it so many times that Noah can tell you the story himself (we read the story of Noah for almost the entire month of January).  Now he is into the story of Moses.

Noah is an excellent big brother to Juliana.  There have been times when I have come into the room to find the two of them sitting together looking at books and Noah pointing out pictures or making sounds of animals for her.  Sometimes he hides the two of them under a blanket and I have to "find" them.  The two of them especially like to play "house" or "tea party" in Chili's dog crate (he's a big dog, so it's a big crate with lots of room, but I don't take pictures of that because I'm sure they'd be misinterpreted somehow).  One of my favorite moments are when we are at the store and Juliana insists on walking because Noah is walking, and then Juliana insists on holding Noah's hand and he lets her.

Noah has been very resilient this past year with everything that has gone on with Juliana.  There have been many times when I have had to leave him with a sitter to take Juliana to a specialist and he never put up a fuss or anything.  There have also been times when I couldn't find a sitter and had to bring him with me to the lengthy appointments and he held up as well as you could expect a 3 year old to.  He understands that Juliana has therapists and he knows their names and even what days of the week they come on, so if for some reason our schedule gets changed and I don't tell him, he will ask, "But Momma, sister has therapy today.  We need to go home."

Noah is a huge "momma's boy" and I know that it won't last forever, so I will treasure it for as long as it lasts.  I love when he asks if I will snuggle him- on the rare occasion that he wants to sit still.  I love that when I drop him off at Theresa's house he insists on giving me 5 goodbye kisses and telling me to "be good at school" and that he'll "miss me at school".  Happy Birthday, Noah!  Your Daddy and I love you so very much!

Tuesday, March 1, 2011

A Scary Morning...

There are days when I wish I could rewind and redo events.  This morning Juliana was trying to get to the blocks in the corner and she fell.  Normally when she falls she never cries.  Never.  She fell down the steps because the gate wasn't shut (don't even get me started on who forgot to shut that gate) and she didn't cry.  This time she cried.  I picked her up and she laid her head on my shoulder and stopped crying, so I thought she was fine.  I put her down and started herding everyone to the door to get on our coats.  I looked at Juliana and there was a blood running down her head, face, and onto her shirt.  I remained surprisingly calm and ran her up to the bathroom so that I could clean her head and figure out where the blood was coming from.  She sat on the sink and let me wash the side of her head with soap and water, clean it with some peroxide and put neosporin on it. 

Then came time for the band-aid.  We have 3 types of band-aids: princess, shrek, and toy story.  Juliana picked the princess box.  When I opened the box, it was empty, which is odd, because the box is pretty new.  Then I remembered that Noah likes to carry around boxes of band-aids and "distribute" them around the house.  That's when I yelled at Noah for hiding the band-aids around the house while his sister is bleeding from the head.  I regretted the words as soon as they left my mouth.  Noah's face instantly crumbled and he began to cry and tell Juliana how sorry he was that she couldn't have a princess band-aid.  I put a Shrek band-aid on Juliana's head, changed her clothes and put her down.  She immediately ran off looking for some more mischief to get into (I found her trying to climb up Noah's bookshelf trying to get a stuffed animal). 

I took her clothing to the laundry room to soak them before the blood dried, and passed by Noah's room.  Noah was sitting in his room all by himself.  I knew what I needed to do.  I went and apologized to him for yelling at him.  I explained to him that I didn't mean to yell at him I was just upset about Juliana's head and all the blood scared me.  He gave me a hug and kiss and told me it was okay.  Then he took my hand and said, "c'mon Momma, we need to get going."  When did my little boy turn into a big boy?