I'd like to share a post from Jess. I've mentioned her before, as her blog is one of my favorites. She doesn't travel the exact same path that we do, as her angel does not have Down Syndrome. But our paths are very similar, and she inspires me.
Read this post.
Be encouraged. Be inspired. To keep doing what we do.
Being advocates for our kids.
Hugs~
Linda
Words from a friend
I am currently working on a couple of blog posts but needed a break so I signed on to my Facebook account. I had been messaging back and forth with a friend that I am very concerned about right now. I found this message:
Linda,
Love you for your compassion and for being someone that knows God- in that great, loving, non-judgmental, non-punishing, protective, peaceful way - that He is.
The words she wrote were very humbling. They brought me to tears. In the midst of all of life's issues- Lila taking a few steps back in some areas, my cluttered house, never enough time in the day, laundry piling up, sick of never being able to see my family, people throwing the word "retard" around, people arguing about politics, people arguing about whether or not Americans should be giving aid to Haiti, and the list goes on and on, her words were a reminder to me of what matters most.
Reaching out to others. Being the hands and feet of Jesus. Just "being there" for people.
So thanks. For the kind words, and for the reminder.
Hugs~
Linda
Linda,
Love you for your compassion and for being someone that knows God- in that great, loving, non-judgmental, non-punishing, protective, peaceful way - that He is.
The words she wrote were very humbling. They brought me to tears. In the midst of all of life's issues- Lila taking a few steps back in some areas, my cluttered house, never enough time in the day, laundry piling up, sick of never being able to see my family, people throwing the word "retard" around, people arguing about politics, people arguing about whether or not Americans should be giving aid to Haiti, and the list goes on and on, her words were a reminder to me of what matters most.
Reaching out to others. Being the hands and feet of Jesus. Just "being there" for people.
So thanks. For the kind words, and for the reminder.
Hugs~
Linda
Bragging on my girl
Miss Lila had an ENT appointment yesterday and I was so proud of my "big" little girl. She let the NP look in her ears, nose and throat without complaining. She even opened up her mouth and said, "Ahhh" without having to be told when she saw the popsicle-stick-looking thing. (What are those things called, anyway?)
One of her ear tubes had fallen out, but the one in her left ear needed to be taken out as it had moved. We went into a procedure room, where Lila laid down on the table and was perfectly still while the NP got out the sharpest looking instrument I'd ever seen to retrieve the tube. *Yikes!*
That took about 3 seconds and we were ready to go. As we were walking down the hall, the NP said to Lila, "You get 2 stickers for being such a good girl today!" Lila held up 2 fingers and said, "2 tickas!" Then she held up the other hand and counted "one, two" on her fingers. The NP had started to walk away, but turned around when Lila started counting. "Wow", she said, "she's really smart!"
And as we walked down the hall toward the exit, Lila had a little conversation with herself- referring to herself in the third person, as she often does. "Lila, good girl! 2 tickas! One, two"
I didn't really understand why the NP made a big to-do about Lila counting to 2 on her fingers. She only counted to 2, she didn't count to 25. And I felt that if Lila had been a typical kid, it wouldn't have been a big deal at all but since she has Down Syndrome, it was huge. (BTW, Tiffani and Nick disagreed with me, which sparked a great family discussion last night.)
I was probably being senstive as I had conversations with 2 friends (mothers of kids with DS) yesterday where we discussed the low expectations that some professionals have for our kids. And I was pretty fired up after those conversations.
While I am almost the end of this post, I'm definitely not the end of this subject. I will be blogging about all of that later, but for now I just wanted to brag. Our little girl is growing up!
She will be getting a new set of tubes next month!
Hugs~
Linda & Lila
One of her ear tubes had fallen out, but the one in her left ear needed to be taken out as it had moved. We went into a procedure room, where Lila laid down on the table and was perfectly still while the NP got out the sharpest looking instrument I'd ever seen to retrieve the tube. *Yikes!*
That took about 3 seconds and we were ready to go. As we were walking down the hall, the NP said to Lila, "You get 2 stickers for being such a good girl today!" Lila held up 2 fingers and said, "2 tickas!" Then she held up the other hand and counted "one, two" on her fingers. The NP had started to walk away, but turned around when Lila started counting. "Wow", she said, "she's really smart!"
And as we walked down the hall toward the exit, Lila had a little conversation with herself- referring to herself in the third person, as she often does. "Lila, good girl! 2 tickas! One, two"
I didn't really understand why the NP made a big to-do about Lila counting to 2 on her fingers. She only counted to 2, she didn't count to 25. And I felt that if Lila had been a typical kid, it wouldn't have been a big deal at all but since she has Down Syndrome, it was huge. (BTW, Tiffani and Nick disagreed with me, which sparked a great family discussion last night.)
I was probably being senstive as I had conversations with 2 friends (mothers of kids with DS) yesterday where we discussed the low expectations that some professionals have for our kids. And I was pretty fired up after those conversations.
While I am almost the end of this post, I'm definitely not the end of this subject. I will be blogging about all of that later, but for now I just wanted to brag. Our little girl is growing up!
She will be getting a new set of tubes next month!
Hugs~
Linda & Lila
Lila's Birthday Party
Lila's birthday party was in September and I'm just now getting around to posting the pictures. It's true.
A little benefit of having the flu. I have plenty of "downtime" right now. Moving right along~
Lila's birthday happens to come around at a great time of year~ the weather is usually not too hot, not too cold. The weather for Lila's 3rd birthday party was absolutely beautiful. (It's a good thing, as we rented a pavilion at a local park and didn't really have a good back-up plan.)
The day of the party, it was all-hands-on-deck. Thankfully, Nick's parents, Mema and Poppy, were here and really helped a lot. Poppy and Justin picked up the helium balloons. Justin dropped Tiffani and Maggie off at the park pavilion to start decorating. Justin went over to parks and recreation to pick up the pavilion permit, then headed back over to the pavilion to help decorate. Poppy picked up the food order at Wegmans while Mema, Nick and I worked together to prepare the rest of the food at home. It took 4 vehicles to bring everything to the park. Gotta love teamwork!
Thank goodness for balloon weights!
Justin battles the balloons
Lila greeting the first guests
Lila & Mema playing
Some of our friends
More friends!
Ashley & Pat
Roxy
Stephen
While her friend Cora looks on
Lila & Cora enjoying their cake!
Pink & Brown!
Very happy Birthday girl!
My 3 beautiful kids!
Lila & Justin
Everyone helped clean up~ even the birthday girl!
Thanks to everyone for sharing Lila's birthday with us! We had a great day!
Hugs~
Linda & Lila
A little benefit of having the flu. I have plenty of "downtime" right now. Moving right along~
Lila's birthday happens to come around at a great time of year~ the weather is usually not too hot, not too cold. The weather for Lila's 3rd birthday party was absolutely beautiful. (It's a good thing, as we rented a pavilion at a local park and didn't really have a good back-up plan.)
Night before "prep" work was a family affair!
Personalized "boy" goody bags
Personalized "girl" goody bags
The day of the party, it was all-hands-on-deck. Thankfully, Nick's parents, Mema and Poppy, were here and really helped a lot. Poppy and Justin picked up the helium balloons. Justin dropped Tiffani and Maggie off at the park pavilion to start decorating. Justin went over to parks and recreation to pick up the pavilion permit, then headed back over to the pavilion to help decorate. Poppy picked up the food order at Wegmans while Mema, Nick and I worked together to prepare the rest of the food at home. It took 4 vehicles to bring everything to the park. Gotta love teamwork!
Maggie & Tif working against the wind
Thank goodness for balloon weights!
Justin battles the balloons
Lila greeting the first guests
Lila & Mema playing
Some of our friends
More friends!
Ashley & Pat
Roxy
Stephen
Payton
Lila blowing out the candles with Daddy
While her friend Cora looks on
Lila & Cora enjoying their cake!
Apparently Lila didn't have enough so Cody shared his cake with her!
Pink & Brown!
Very happy Birthday girl!
My 3 beautiful kids!
Lila & Justin
The gift table
Everyone helped clean up~ even the birthday girl!
Thanks to everyone for sharing Lila's birthday with us! We had a great day!
Hugs~
Linda & Lila
Music Class
We've completed our second week of music class, Music With Maddy, and Lila loves it! It is a Special Needs/Typical class, but most of the kids in the class are "differently abled". All of the kids (and adults) seem to have a great time.
These are not the greatest pictures, but they still show how much fun the kids are having!
Lila doing her own thing!
Look at that face- she's concentrating so hard!
At the end of the class, Miss Maddy lets the kids play her guitar if they want to. Lila was so funny last week. She started strumming the guitar, then started singing a song I didn't recognize.
Still singing.......
There are 8 more classes in this session. Hopefully there will be many more music classes in our future.
Hugs~
Linda & Lila
These are not the greatest pictures, but they still show how much fun the kids are having!
Lila rockin' out with her shakers!
Nika getting into the music
Roxy taking after her daddy the musician!
Lila doing her own thing!
Look at that face- she's concentrating so hard!
At the end of the class, Miss Maddy lets the kids play her guitar if they want to. Lila was so funny last week. She started strumming the guitar, then started singing a song I didn't recognize.
Whatever she was singing, she was into it!
Still singing.......
There are 8 more classes in this session. Hopefully there will be many more music classes in our future.Hugs~
Linda & Lila
Guess who's finally self-feeding?
Mac-n-cheese at home
Cereal at Mema and Poppy's house
And looking pretty darn proud of herself!Hugs~
Linda
January 2010
January 2010 has been a little crazy so far. Lila went into the hospital on New Year's day, was out of school the entire next week, and went back to school on the 11th.
She was healthy for about 4 days, then started heading downhill again. We paged the doctor on Saturday the 16th- they put her back on a liquid steroid for 3 days.
Tuesday the 19th- back to the doctor. The doctor walked in and, as if on cue, Lila coughed. OH, NO! The doctor said. That's the same cough! This is not good! She told us to continue with the liquid steroid for 2 more days, and added Pulmicort (inhaled steroid) and a bronchodilator, Xopenex, for at least the next month.
She was getting better, then took a turn for the worse last night. She was very restless and her cough was worse. She wasn't the only one. I was up all night coughing, teeth chattering with chills, burning up with fever. My head was pounding and my throat was on fire.
This morning I asked Nick to stay home from work. I knew that there was no way I would be able to take care of Lila today. I could barely walk to the bathroom, which is attached to our bedroom. I slept on and off until 2 pm. At 4 pm I decided to go to the doctor.
I swabbed positive for flu. Ugh. I'm the first case they have seen in over a month. Lucky me. I paged the pediatrician and asked for preventative Tamiflu for Lila. She thought it was a good idea. Hopefully we will be on the mend soon!
Now on to the good news. Results of my biopsy~ benign! Benign, benign, benign! Happy dance for me. Thank you, Lord.
As thankful as I am about my news, my heart is heavy for others. In the past week 3 of my friends didn't get good news for their family members. And then there is my dear friend Sheila's husband, Bruce, who has been battling cancer for a year. Which got me thinking about this poem..........
What cancer cannot do...
Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot erode faith.
It cannot destroy peace.
It cannot silence courage.
It cannot suppress memories.
It cannot kill friendship.
It cannot erode the spirit.
It cannot conquer the soul.
Hugs~
Linda
She was healthy for about 4 days, then started heading downhill again. We paged the doctor on Saturday the 16th- they put her back on a liquid steroid for 3 days.
Tuesday the 19th- back to the doctor. The doctor walked in and, as if on cue, Lila coughed. OH, NO! The doctor said. That's the same cough! This is not good! She told us to continue with the liquid steroid for 2 more days, and added Pulmicort (inhaled steroid) and a bronchodilator, Xopenex, for at least the next month.
She was getting better, then took a turn for the worse last night. She was very restless and her cough was worse. She wasn't the only one. I was up all night coughing, teeth chattering with chills, burning up with fever. My head was pounding and my throat was on fire.
This morning I asked Nick to stay home from work. I knew that there was no way I would be able to take care of Lila today. I could barely walk to the bathroom, which is attached to our bedroom. I slept on and off until 2 pm. At 4 pm I decided to go to the doctor.
I swabbed positive for flu. Ugh. I'm the first case they have seen in over a month. Lucky me. I paged the pediatrician and asked for preventative Tamiflu for Lila. She thought it was a good idea. Hopefully we will be on the mend soon!
Now on to the good news. Results of my biopsy~ benign! Benign, benign, benign! Happy dance for me. Thank you, Lord.
As thankful as I am about my news, my heart is heavy for others. In the past week 3 of my friends didn't get good news for their family members. And then there is my dear friend Sheila's husband, Bruce, who has been battling cancer for a year. Which got me thinking about this poem..........
What cancer cannot do...
Cancer is so limited.
It cannot cripple love.
It cannot shatter hope.
It cannot erode faith.
It cannot destroy peace.
It cannot silence courage.
It cannot suppress memories.
It cannot kill friendship.
It cannot erode the spirit.
It cannot conquer the soul.
Hugs~
Linda
Waiting
Today I wait. I'm not good at waiting.
On November 30th I wrote this post about my lovely MRI experience. During that MRI they found that a suspicious group of cells in my left breast that they saw in my previous MRI, 6 months before, had changed. They sent me for an ultrasound to get a different look.
On December 17th I had an ultrasound. The ultrasound revealed a solid nodule. The radiologist recommended a needle biopsy. I did a bit of research on "solid nodules" and found out that approximately 76% are found to be benign, and 24% malignant.
On December 23rd, my primary care physician called and recommended that I consult with a surgeon about everything. They recommended a local surgeon. The cool thing at this point is that a relatively new friend of mine had recently recommended the same surgeon to me at a Christmas party.
Fast forward. Past the holidays. The day after Lila got out of the hospital, January 4th, Nick and I went to see the surgeon. After reviewing the films and reports, she thought it would be better to start with a needle biopsy and go from there.
Yesterday I went for the needle biopsy. Not fun but not awful.
The tech brought me back to my dressing room and after I put my gown on I didn't want to come out! Not sure why, but I was so nervous. I hung my sweater up on the hanger that was provided. Then my scarf. Then my necklace on top of my scarf. Then I straightened the scarf and the necklace so it looked really nice on the hanger.
Really? Pathetic. I was stalling.
The tech stood outside, calling my name. "Linda?"
"I'll be right there!" I answered. And straightened my scarf one more time. Seriously. I was shaking.
I'm not sure why I was being such a wimp. They actually numb the biopsy area, and I knew that. I've had a biopsy of my uterus, which pretty much hurts like fire and there's nothing they can do to numb that area. I've also had an amnio, with nothing to numb the area.
I gave myself a little pep talk and opened the curtain, following the tech into the procedure room.
The doctor came in and introduced herself. She was pretty young. Not too young, but young enough to have a steady hand. Good. I liked her immediately.
She had to make 2 incisions instead of 1 in order to get a good enough angle to obtain 4 samples. There was quite a bit of pushing because of the density of my breasts. She told me there would be quite a bit of pain and bruising because of this. She was right!
Last night I took it easy, as the post-procedure sheet instructed. BORING. I can't sit still for too long, so I was relieved when it was 10 p.m. and I could go to bed. Crazy, I know. In that respect I'm just like my dad. His name is Don, and my husband calls me "Don Jr."
Blah, blah, blah. I'm sick of talking about this, can you tell? Yesterday I had quite a few people message me asking why they hadn't heard that I was having a biopsy done. Quite frankly- I'd rather talk about something else. Anything else. Not to be flippant, but I have more important things to talk about. Like Lila's progress, which I will be blogging about after this. Why not? I'm supposed to take it easy again today. Tomorrow I will be back in business! haha
I should have the results of the biopsy by tomorrow or the next day. I am really not worried. I have total peace in my heart, which is a beautiful thing and I'm so thankful for it. I don't have a feeling on whether or not it is cancer, but even if it is I feel like everything will be fine in the end.
So, there's the update. Not very exciting, but part of life.
And just to be silly, here's a picture Tif took of me after I came home. Texting and holding my frozen veggies close.
Hugs~
Linda
On November 30th I wrote this post about my lovely MRI experience. During that MRI they found that a suspicious group of cells in my left breast that they saw in my previous MRI, 6 months before, had changed. They sent me for an ultrasound to get a different look.
On December 17th I had an ultrasound. The ultrasound revealed a solid nodule. The radiologist recommended a needle biopsy. I did a bit of research on "solid nodules" and found out that approximately 76% are found to be benign, and 24% malignant.
On December 23rd, my primary care physician called and recommended that I consult with a surgeon about everything. They recommended a local surgeon. The cool thing at this point is that a relatively new friend of mine had recently recommended the same surgeon to me at a Christmas party.
Fast forward. Past the holidays. The day after Lila got out of the hospital, January 4th, Nick and I went to see the surgeon. After reviewing the films and reports, she thought it would be better to start with a needle biopsy and go from there.
Yesterday I went for the needle biopsy. Not fun but not awful.
The tech brought me back to my dressing room and after I put my gown on I didn't want to come out! Not sure why, but I was so nervous. I hung my sweater up on the hanger that was provided. Then my scarf. Then my necklace on top of my scarf. Then I straightened the scarf and the necklace so it looked really nice on the hanger.
Really? Pathetic. I was stalling.
The tech stood outside, calling my name. "Linda?"
"I'll be right there!" I answered. And straightened my scarf one more time. Seriously. I was shaking.
I'm not sure why I was being such a wimp. They actually numb the biopsy area, and I knew that. I've had a biopsy of my uterus, which pretty much hurts like fire and there's nothing they can do to numb that area. I've also had an amnio, with nothing to numb the area.
I gave myself a little pep talk and opened the curtain, following the tech into the procedure room.
The doctor came in and introduced herself. She was pretty young. Not too young, but young enough to have a steady hand. Good. I liked her immediately.
She had to make 2 incisions instead of 1 in order to get a good enough angle to obtain 4 samples. There was quite a bit of pushing because of the density of my breasts. She told me there would be quite a bit of pain and bruising because of this. She was right!
Last night I took it easy, as the post-procedure sheet instructed. BORING. I can't sit still for too long, so I was relieved when it was 10 p.m. and I could go to bed. Crazy, I know. In that respect I'm just like my dad. His name is Don, and my husband calls me "Don Jr."
Blah, blah, blah. I'm sick of talking about this, can you tell? Yesterday I had quite a few people message me asking why they hadn't heard that I was having a biopsy done. Quite frankly- I'd rather talk about something else. Anything else. Not to be flippant, but I have more important things to talk about. Like Lila's progress, which I will be blogging about after this. Why not? I'm supposed to take it easy again today. Tomorrow I will be back in business! haha
I should have the results of the biopsy by tomorrow or the next day. I am really not worried. I have total peace in my heart, which is a beautiful thing and I'm so thankful for it. I don't have a feeling on whether or not it is cancer, but even if it is I feel like everything will be fine in the end.
So, there's the update. Not very exciting, but part of life.
And just to be silly, here's a picture Tif took of me after I came home. Texting and holding my frozen veggies close.
Hugs~
Linda
A sad day
From Post Secret 1/10/10.
There are many couples out there that could have sent this postcard in to Post Secret. It makes me incredibly sad.
Today I will attend the memorial service of a little boy that never got the chance to grow up. His sister died 2 years ago after living for almost 3 months. Both were premature babies. My heart hurts for my friend and her husband.
I don't want to live in a perpetual state of sadness. I do want to live in a perpetual state of awareness. People all around me are hurting.
Please say a prayer for this family today. Their faith is strong. As is their grief.
Hug your precious kids today~
Linda
Random family shots
Me and my man...
Tiffani & Justin~ my Longhorn fans
Beautiful, silly girl
Daddy kisses
My family is awesome and I'm so thankful for them. I say it all the time, but I never want to forget or take things for granted. I am blessed!
Hugs~
Linda
It all started in November....
The craziness, that is. You see, we couldn't leave for New York to celebrate Thanksgiving until the last pie was out the door. I'm the fundraising chairperson for JWCL, a local women's club. We had a pie fundraiser to raise money for the Virginia Tech Ambulance Fund. (For more info on the fundraiser, click here.)
My friend and fellow board-member, Kathy, and I headed out to HillHigh Apple Pie to pick up the pies, all 248 of them:
Then Nick and I worked to make sense of it all:
Lila helped too:
And soon we were ready.
The pie distribution went fairly well, and the last pie was gone around 6:00 p.m. So we started our journey to New York around 7:00 pm, thinking that Lila would sleep most of the way. We took a detour to pick Justin up from school in Pennsylvania. We got stuck in construction traffic on the Jersey turnpike, and finally arrived at Nick's parents at 2:15 a.m. Lila hadn't slept a wink. Seems the lights from the other cars and construction work had over-stimulated her. She finally went to sleep at 4:29 a.m. YIKES!
We spent Thanksgiving at Nick's sister's house in New Jersey and had a great time.
On the way home we took a break and ate dinner at Justin's apartment. Lila loved it.
Gangsta
After our Thanksgiving travel, the holiday festivities were in full gear.
We attended the local Down Syndrome holiday party~ hanging out with old friends, and meeting new ones. We also attended 3 other parties that weekend. A bit much? Perhaps.
Lila making her grand entrance into the party. LOL
The blizzard of 2009 flocked the wreath on our front door perfectly.
Our friends invited us to a snow party so we walked over. Their house is about 4 blocks away. We had so much fun! It was Lila's first time to ride in a sled. She loved it. Except when she landed face-first in the snow. Twice. Daddy carried her on the way home.
We waited for Justin to arrive home for winter break and trimmed the tree as a family. Justin was trying to teach Lila to put the ornaments on the tree, not take them off. She didn't get it.
We headed out to New York for Christmas, this time at a more sensible hour.
On Christmas Eve day, we had lunch with our friends Margaret, Sean and Brendan. It was a bittersweet time as there was someone missing from the gathering. Dave. Nick's friend. Margaret's husband. Sean & Brendan's dad. He passed away 3 years ago after losing his fight with pancreatic cancer. Spending Christmas Eve lunch with their family has been one of Nick's traditions for a very long time. It was so nice to be able to start it up again.
Lila, hanging out with Sean.
And then the fun began.
Lila with Daddy at dinner
With the rest of the crazies~ having appetizers~
Nick's parents watching and waiting on the pasta water to boil. (You know what they say about that.)
Nick's nephew, Ryan, passed out lottery tickets to pass the time.
At last! The delicious food was ready. Nicole and Emily dig into the Chicken Parmesan.
After dinner, the kids played dress-up while the food was put away and dishes were done.
At the family gift exchange, Lila got a Sit-n-Spin from Uncle Peter and Aunt Laurie. Oh, wait! Lila doesn't participate in the gift exchange! Everyone buys Lila a gift. : )
On Christmas morning, Lila was Santa's Helper. As you can see, it is hard work.
Daddy and Lila with her gifts
For dinner on Christmas Day, we head over to Aunt Barbara and Uncle Jimmy's house. We always have a great time over there!
Tif & Lila are ready to go! They're probably waiting on me. LOL. No, seriously.
Lila, Mema and James
Lila and Mema with the babydoll and outfit hand-made by Aunt Barbara. It was so thoughtful, it made me cry. (Doesn't take much, though, does it?)
Lila and James were watching a movie in the guest bedroom. Nick kept making comments about James putting the moves on Lila. Actually, it was Lila that kept trying to hug him!
After a lovely time in New York, we headed back to Virginia. The weather was so nice that we took Lila to the park after church.
Two days later, in the middle of the night, Lila started coughing. Barking. Like a seal. It wasn't pretty. I took her to the doctor and she was diagnosed with croup and an ear infection. We were sent home with 2 different types of breathing treatments and a prescription for Augmentin. Thankfully, she started sounding and feeling better within 24 hours.
Then it was New Year's Eve and we were going to a friend's party. Just as we were about to leave for the party we noticed that Lila's hands and feet had a purple tint to them. I called our pediatrician, and after talking for a while she told me that it was ok to go ahead with our plans. Lila wasn't showing any signs of breathing issues, and seemed fine. She felt that Lila had gotten a chill and the core of her body was tense, causing her feet and hands to turn purple. We also discussed that sometimes kids with Down Syndrome have occasional circulatory issues. It sounded logical to me, and we went to the party.
We were staying overnight, so we put Lila to bed around 9:00. She woke up when we came into the room around 2:00 a.m. and we were awake with her until 5:00 a.m. (At least that's what I remember. Sleep deprivation is an ugly thing.)
The next morning, Lila was fine. She ate breakfast,played and had a great time. We didn't leave their house until early afternoon! (Sorry about that, it was just so relaxed we lost track of time.)
Fast forward to that evening. We had dinner together as a family, put Lila to bed around 8:30, nothing was out of the ordinary. At 10:30, Nick went upstairs to check on her. And promptly came back downstairs with a worried look on his face. I went upstairs with him, felt her breathing, and called the pediatrician.
Her breathing was so shallow. Labored. I could see her little body struggling to breathe. And still she slept. The doctor told us to give her another type of breathing treatment, Xopenex, that we always have on hand for her just in case. We were thankful to have it, but it didn't matter. It didn't help. Within 30 minutes we were in the car on the way to the emergency room.
The rest of the night was a blur. Within 3 minutes of walking into the hospital they were checking Lila's oxygen levels. 77.
77? Really? I looked at the nurse, then back at the monitor. It was then that she realized we knew how to read the monitor. Compliments of our 7 week NICU stay.
"77 is not a true read", she said. "Give me a minute." She made an adjustment and the reading went to 83. She went to the phone. "I have a patient in respiratory distress. I'm bringing her back."
And back we went. Back to oxygen, blood draws, screaming, fighting. Lila was awake now! She was scared. We were worried. Off to the x-ray room. "No, mom, you don't have to move, we're taking the whole bed down there." Seriously? I have to pee. In a big way.
Lila saying "Cheese" to the x-ray technician. Back to the ER. Fluid on the lungs, she still needs oxygen. We need to admit her. Here comes the IV. Poor little thing. So sick, and doesn't understand what's going on.
Here she is sleeping with her little "kitty cat nose" oxygen mask on.
The next day, Lila felt very sick and didn't have much energy. We chilled out in the room watching movies and reading books. She kept saying, "I sick, mama. I sick."
That night we took her for a walk around the peds unit. She was happy to be out of the hospital room for a little while. (To be honest, so was I. I'm not good at being cooped up. LOL)
Nick went home to get some sleep and I stayed with Lila. She had a really rough time that night. The nurses were in the room more often than they were out for about 3 hours. Lila's oxygen levels kept dropping. They kept raising her oxygen. Repeat. It was like she just couldn't get enough oxygen. When she was awake, she was coughing. A lot. When she would fall asleep, her oxygen levels would drop. I was in and out of sleep during those hours~ mostly staying in my bed as there was nothing I could do but wait and pray.
I walked over and stood beside one of the nurses and she said, "We are taught to treat the patient, not the numbers on the monitor. We have been watching her and even though her oxygen levels are dropping on the monitor, she isn't laboring to breathe."
I've heard that before. In the NICU. I knew that she was right but was still worried about the numbers on the monitor. They removed the "kitty cat" nose and fit her with oxygen prongs. This seemed to help immensely, and Lila finally fell asleep and stayed asleep for the next 5 hours. Thankfully, so did I.
The next day we had the same nurse as the day before, and she was wonderful. Before she had kids she was a nurse at Children's Hospital in DC. She told us that she had cared for a couple of kids with Down Syndrome that had low oxygen levels when they were sleeping and that was just their "norm". She felt like that might be the case with Lila, as Lila's levels only dropped when she fell asleep and even when they were sitting between 89 and 92 she still wasn't laboring to breathe. She said that she would talk to the doctor about it.
When the doctor did her rounds, she gave us the choice to stay or go home. Everything they were doing at the hospital could be done at home, minus the IV and oxygen monitor, which were a constant irritation to Lila. She left us alone to talk.
Even though we were a little nervous, we both felt like it would be best for Lila to take her home. And we did.
Here's Lila, glad to be home but still not feeling well.
Here she is, hugging Justin. (As a side note, it took a lot of conditioner to get that bird's nest out of her hair.)
Lila went for a checkup the next day and they could still hear "crackling" when they listened to her breathing. She missed school and therapies for the entire week. She was on steroids for 4 more days, which made life at home an adventure. Steroids don't exactly bring out the best in most people.
She has been off of the the steroids for 2 days and she is almost back to her normal, happy self. We are so thankful that she is home, safe and sound. We are so grateful for the prayers of our families and friends.
It seems we may have stretched her a bit too far this holiday season. She probably would not have ended up in the hospital if we had been more careful. We will be scaling things back next year.
Living and learning~
Linda
P.S. I cannot stand reading blog posts that are this long. Sorry, but once I got started I needed to finish all in one post. I'll try not to let it happen again.
My friend and fellow board-member, Kathy, and I headed out to HillHigh Apple Pie to pick up the pies, all 248 of them:
Then Nick and I worked to make sense of it all:
Lila helped too:
And soon we were ready.
The pie distribution went fairly well, and the last pie was gone around 6:00 p.m. So we started our journey to New York around 7:00 pm, thinking that Lila would sleep most of the way. We took a detour to pick Justin up from school in Pennsylvania. We got stuck in construction traffic on the Jersey turnpike, and finally arrived at Nick's parents at 2:15 a.m. Lila hadn't slept a wink. Seems the lights from the other cars and construction work had over-stimulated her. She finally went to sleep at 4:29 a.m. YIKES!
We spent Thanksgiving at Nick's sister's house in New Jersey and had a great time.
On the way home we took a break and ate dinner at Justin's apartment. Lila loved it.
Gangsta
After our Thanksgiving travel, the holiday festivities were in full gear.
We attended the local Down Syndrome holiday party~ hanging out with old friends, and meeting new ones. We also attended 3 other parties that weekend. A bit much? Perhaps.
Lila making her grand entrance into the party. LOL
The blizzard of 2009 flocked the wreath on our front door perfectly.
Our friends invited us to a snow party so we walked over. Their house is about 4 blocks away. We had so much fun! It was Lila's first time to ride in a sled. She loved it. Except when she landed face-first in the snow. Twice. Daddy carried her on the way home.
We waited for Justin to arrive home for winter break and trimmed the tree as a family. Justin was trying to teach Lila to put the ornaments on the tree, not take them off. She didn't get it.
We headed out to New York for Christmas, this time at a more sensible hour.
On Christmas Eve day, we had lunch with our friends Margaret, Sean and Brendan. It was a bittersweet time as there was someone missing from the gathering. Dave. Nick's friend. Margaret's husband. Sean & Brendan's dad. He passed away 3 years ago after losing his fight with pancreatic cancer. Spending Christmas Eve lunch with their family has been one of Nick's traditions for a very long time. It was so nice to be able to start it up again.
Lila, hanging out with Sean.
And then the fun began.
Lila with Daddy at dinner
With the rest of the crazies~ having appetizers~
Nick's parents watching and waiting on the pasta water to boil. (You know what they say about that.)
Nick's nephew, Ryan, passed out lottery tickets to pass the time.
At last! The delicious food was ready. Nicole and Emily dig into the Chicken Parmesan.
After dinner, the kids played dress-up while the food was put away and dishes were done.
At the family gift exchange, Lila got a Sit-n-Spin from Uncle Peter and Aunt Laurie. Oh, wait! Lila doesn't participate in the gift exchange! Everyone buys Lila a gift. : )
On Christmas morning, Lila was Santa's Helper. As you can see, it is hard work.
Daddy and Lila with her gifts
For dinner on Christmas Day, we head over to Aunt Barbara and Uncle Jimmy's house. We always have a great time over there!
Tif & Lila are ready to go! They're probably waiting on me. LOL. No, seriously.
Lila, Mema and James
Lila and Mema with the babydoll and outfit hand-made by Aunt Barbara. It was so thoughtful, it made me cry. (Doesn't take much, though, does it?)
Lila and James were watching a movie in the guest bedroom. Nick kept making comments about James putting the moves on Lila. Actually, it was Lila that kept trying to hug him!
After a lovely time in New York, we headed back to Virginia. The weather was so nice that we took Lila to the park after church.
Two days later, in the middle of the night, Lila started coughing. Barking. Like a seal. It wasn't pretty. I took her to the doctor and she was diagnosed with croup and an ear infection. We were sent home with 2 different types of breathing treatments and a prescription for Augmentin. Thankfully, she started sounding and feeling better within 24 hours.
Then it was New Year's Eve and we were going to a friend's party. Just as we were about to leave for the party we noticed that Lila's hands and feet had a purple tint to them. I called our pediatrician, and after talking for a while she told me that it was ok to go ahead with our plans. Lila wasn't showing any signs of breathing issues, and seemed fine. She felt that Lila had gotten a chill and the core of her body was tense, causing her feet and hands to turn purple. We also discussed that sometimes kids with Down Syndrome have occasional circulatory issues. It sounded logical to me, and we went to the party.
We were staying overnight, so we put Lila to bed around 9:00. She woke up when we came into the room around 2:00 a.m. and we were awake with her until 5:00 a.m. (At least that's what I remember. Sleep deprivation is an ugly thing.)
The next morning, Lila was fine. She ate breakfast,played and had a great time. We didn't leave their house until early afternoon! (Sorry about that, it was just so relaxed we lost track of time.)
Fast forward to that evening. We had dinner together as a family, put Lila to bed around 8:30, nothing was out of the ordinary. At 10:30, Nick went upstairs to check on her. And promptly came back downstairs with a worried look on his face. I went upstairs with him, felt her breathing, and called the pediatrician.
Her breathing was so shallow. Labored. I could see her little body struggling to breathe. And still she slept. The doctor told us to give her another type of breathing treatment, Xopenex, that we always have on hand for her just in case. We were thankful to have it, but it didn't matter. It didn't help. Within 30 minutes we were in the car on the way to the emergency room.
The rest of the night was a blur. Within 3 minutes of walking into the hospital they were checking Lila's oxygen levels. 77.
77? Really? I looked at the nurse, then back at the monitor. It was then that she realized we knew how to read the monitor. Compliments of our 7 week NICU stay.
"77 is not a true read", she said. "Give me a minute." She made an adjustment and the reading went to 83. She went to the phone. "I have a patient in respiratory distress. I'm bringing her back."
And back we went. Back to oxygen, blood draws, screaming, fighting. Lila was awake now! She was scared. We were worried. Off to the x-ray room. "No, mom, you don't have to move, we're taking the whole bed down there." Seriously? I have to pee. In a big way.
Lila saying "Cheese" to the x-ray technician. Back to the ER. Fluid on the lungs, she still needs oxygen. We need to admit her. Here comes the IV. Poor little thing. So sick, and doesn't understand what's going on.
Here she is sleeping with her little "kitty cat nose" oxygen mask on.
The next day, Lila felt very sick and didn't have much energy. We chilled out in the room watching movies and reading books. She kept saying, "I sick, mama. I sick."
That night we took her for a walk around the peds unit. She was happy to be out of the hospital room for a little while. (To be honest, so was I. I'm not good at being cooped up. LOL)
Nick went home to get some sleep and I stayed with Lila. She had a really rough time that night. The nurses were in the room more often than they were out for about 3 hours. Lila's oxygen levels kept dropping. They kept raising her oxygen. Repeat. It was like she just couldn't get enough oxygen. When she was awake, she was coughing. A lot. When she would fall asleep, her oxygen levels would drop. I was in and out of sleep during those hours~ mostly staying in my bed as there was nothing I could do but wait and pray.
I walked over and stood beside one of the nurses and she said, "We are taught to treat the patient, not the numbers on the monitor. We have been watching her and even though her oxygen levels are dropping on the monitor, she isn't laboring to breathe."
I've heard that before. In the NICU. I knew that she was right but was still worried about the numbers on the monitor. They removed the "kitty cat" nose and fit her with oxygen prongs. This seemed to help immensely, and Lila finally fell asleep and stayed asleep for the next 5 hours. Thankfully, so did I.
The next day we had the same nurse as the day before, and she was wonderful. Before she had kids she was a nurse at Children's Hospital in DC. She told us that she had cared for a couple of kids with Down Syndrome that had low oxygen levels when they were sleeping and that was just their "norm". She felt like that might be the case with Lila, as Lila's levels only dropped when she fell asleep and even when they were sitting between 89 and 92 she still wasn't laboring to breathe. She said that she would talk to the doctor about it.
When the doctor did her rounds, she gave us the choice to stay or go home. Everything they were doing at the hospital could be done at home, minus the IV and oxygen monitor, which were a constant irritation to Lila. She left us alone to talk.
Even though we were a little nervous, we both felt like it would be best for Lila to take her home. And we did.
Here's Lila, glad to be home but still not feeling well.
Here she is, hugging Justin. (As a side note, it took a lot of conditioner to get that bird's nest out of her hair.)
Lila went for a checkup the next day and they could still hear "crackling" when they listened to her breathing. She missed school and therapies for the entire week. She was on steroids for 4 more days, which made life at home an adventure. Steroids don't exactly bring out the best in most people.
She has been off of the the steroids for 2 days and she is almost back to her normal, happy self. We are so thankful that she is home, safe and sound. We are so grateful for the prayers of our families and friends.
It seems we may have stretched her a bit too far this holiday season. She probably would not have ended up in the hospital if we had been more careful. We will be scaling things back next year.
Living and learning~
Linda
P.S. I cannot stand reading blog posts that are this long. Sorry, but once I got started I needed to finish all in one post. I'll try not to let it happen again.
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