Hello Friends! Today Lillian had an IOS test at the hospital and then we went over to the dr and had her appointment and got the results. This test is some sort of pulmonary function test that is done on kids who are typically much younger I think. Anyway, last night I started to get that dreaded feeling of getting a test result that may be bad news. This morning, I began to pray for a good report.
She did the test with minimal upset. There were still tears and anxiety, but once she realized it wasn't terrible she seemed ok. She didn't perform it totally correctly, but you get what you get.
Since there were NO places in walking distance to go eat so we ate in this tiny little cafe in the medical office building while we burned time for her appointment. ( I didn't want to leave the garage because the hospital validated my parking.
His first words were "it's not as bad as I thought it would be considering what we've been through, I thought it would be a lot worse" (I found it a tad funny that he said we) One test was mildly out of range and the other was way below out of range. He said the below one was likely due to the way she performed during the test which was supposed to be normal breathing, but she just couldn't understand that concept. He said the tests were indicative of her diagnoses, lung disease, asthma...etc...her tests were improved after administration of albuterol. (a breathing treament) He said this test didn't really give them a picture of lung capacity though.
He want us to start her on benadryl a couple times of day to help with her drainage. Her allergy testing was negative but he believes she still is having reaction to environmental elements.
Then,.well, then...I had to tell him about the sleep apnea spells I've been witnessing and his countenance changed immensely. He went from relaxed, happy face, to stern, solemn, serious face. So I am supposed to start a journal of episodes that I witness. He said we may need to do another sleep study soon. I told him I was afraid of finding out where all that might lead. Scary.
We go back in January. Now we just need to stay healthy.
On another note, if you visit her blog here from your phone (and that's the only way you've ever looked at) just want you to know if you view the web version I have other content on the blog that I've written.
Thanks for your prayers!
Monday, August 17, 2015
Wednesday, June 17, 2015
Back to school blues
Many of my friends have been posting pictures on facebook of their children heading back to school. I love seeing the kids. Watching them grow and move forward.....
But sadness follows immediately and pain squeezes my heart.
My friends, friends I've had since childhood...posting pictures of their second grade kids. The grade my Lillian is technically in. I see them and I'm happy...but each time I think of it I reflect on my little angel who is so very far from her peers...and I just feel sad. Sad to see the milestones that continue to get farther and farther away from her. Falling farther and farther apart from her "peers".
I told Matt tonight I didn't understand why it made me so sad. I had to hold back my tears. There is just heartbreak I can't explain.
Everyone...most everyone...looks at Lillian and usually the response is "oh I think she's just doing great". Well, she is doing great. BUT... can you understand the pain of watching her grunt to nonexistent people playing in her own little world where I can't understand a thing that's happening. The daily frustration I feel when she's desperately trying to tell me things in grunts that I never know what she's saying and she just gives up.....or when she gets sad and I have no idea why because she can't communicate it to me.
I'm thrilled that she is relatively healthy right now.
She's full full full of love and she is happy most of the time. Thankfully.
But there are daily reminders of things that will never be for her. That's our reality. And right now, it just makes me sad.
Tomorrow's a new day.
Written in august 2014
But sadness follows immediately and pain squeezes my heart.
My friends, friends I've had since childhood...posting pictures of their second grade kids. The grade my Lillian is technically in. I see them and I'm happy...but each time I think of it I reflect on my little angel who is so very far from her peers...and I just feel sad. Sad to see the milestones that continue to get farther and farther away from her. Falling farther and farther apart from her "peers".
I told Matt tonight I didn't understand why it made me so sad. I had to hold back my tears. There is just heartbreak I can't explain.
Everyone...most everyone...looks at Lillian and usually the response is "oh I think she's just doing great". Well, she is doing great. BUT... can you understand the pain of watching her grunt to nonexistent people playing in her own little world where I can't understand a thing that's happening. The daily frustration I feel when she's desperately trying to tell me things in grunts that I never know what she's saying and she just gives up.....or when she gets sad and I have no idea why because she can't communicate it to me.
I'm thrilled that she is relatively healthy right now.
She's full full full of love and she is happy most of the time. Thankfully.
But there are daily reminders of things that will never be for her. That's our reality. And right now, it just makes me sad.
Tomorrow's a new day.
Written in august 2014
How a bathing suit brought me to tears
So, you heard someone weeping in the dressing rooms? That could've been me. You thought to yourself, well, gosh I know bathing suits are not my favorite thing to try on either...but crying???
You see, I was in there with my 8 year old daughter. She's only 35 pounds or so. Since her body doesn't grow in the way that it should, her body just doesn't fit into clothing properly. Of course, seeing her undressed always tugs at my heart, as I can see almost every bone protruding through her skin. It causes me to wonder what keeps her from having broken bones every time she falls? Anyway, as I put one bathing suit on her and it was too big, I moved on to the next which was too small. No matter the size, nothing seemed to fit on her. One pieces, bikinis, tankinis...it was just becoming crazy. We tried EVERY single style of suit they had on the rack I felt the tears coming on. I tried to hold them back...as I hollered out to my husband, "I don't know what we're going to do...nothing fits her"
And then, a moment of clarity...well, maybe I can buy two sizes of the same two piece suit. Of course, the most expensive one is the only one that semi- worked. The bottoms were fours, but they still gape around her tiny thighs.
Clothes have always been an issue for our Lillian, but for some reason, the bathing suit drama just got the best of me.
So, half an hour later, two swim suits in hand, roughly thirty dollars poorer...(LOL) we left with a semi-fitted bathing suit.
And that's how a bathing suit brought me to tears. Things are not always as they seem.
You see, I was in there with my 8 year old daughter. She's only 35 pounds or so. Since her body doesn't grow in the way that it should, her body just doesn't fit into clothing properly. Of course, seeing her undressed always tugs at my heart, as I can see almost every bone protruding through her skin. It causes me to wonder what keeps her from having broken bones every time she falls? Anyway, as I put one bathing suit on her and it was too big, I moved on to the next which was too small. No matter the size, nothing seemed to fit on her. One pieces, bikinis, tankinis...it was just becoming crazy. We tried EVERY single style of suit they had on the rack I felt the tears coming on. I tried to hold them back...as I hollered out to my husband, "I don't know what we're going to do...nothing fits her"
And then, a moment of clarity...well, maybe I can buy two sizes of the same two piece suit. Of course, the most expensive one is the only one that semi- worked. The bottoms were fours, but they still gape around her tiny thighs.
Clothes have always been an issue for our Lillian, but for some reason, the bathing suit drama just got the best of me.
So, half an hour later, two swim suits in hand, roughly thirty dollars poorer...(LOL) we left with a semi-fitted bathing suit.
And that's how a bathing suit brought me to tears. Things are not always as they seem.
Monday, June 15, 2015
Did you know?
There are easier, kinder ways to let people know you miss them. (let me just say I'm sure I've been guilty of this very thing, but it's been so long I can scarce remember) I've written of my experiences recently of missing church on Sundays. ***Listen, I know this life is not all about me and my little world...I get that...but this little blog here is a place for me to release things from my mind or maybe touch someone else on a similar path...or enlighten people who may be in the dark***
We, as a family, have been living through some very difficult situations in the last seven months. All of it revolving around the health of a few of our kids. It has been HARD. I have landed in pits and struggled with my parenting. I have never stopped praying or seeking God in all of these days. While there may be some who view my lack of attendance at church as that...it is not. I have been told as much. Me and Jesus have talked about it. I have struggled will feeling offended by my friends and church family. Every time, I realize, it's about Him. It doesn't matter what other people think or say.
Did you know that your exaggerated, surprise appearance to my walking in the church was funny once, but after the third time it was difficult for me not to feel shamed. Did you know when you "re-introduced"yourself to me for the third time, it ceased to feel like a joke. Did you know when you asked me about my "annual church visit" for the second time I had trouble keeping a smile on my face and feeling loved?
Did you know that morning was only the second time this year I've gotten my husband to come to church. Did you know we were late because we couldn't get our child's feeding pump working properly and it took nearly twenty minutes to fix it? Did you know I was worried my medically fragile child might get sick just by bringing her into church? Did you know I battled tears as I felt there was no place for her during children's time eventually leaving her in the preschool room with three and four year olds? Did you realize I felt there was little connection with God because I was monitoring my toddler because I don't want him in the nursery for fear he will bring something home to his medically fragile child? Did you know we pulled our child out of church and school and large gatherings and she stopped being sick ALL THE TIME? Did you know I do trust God, and I believe He's given us discernment in all of this?
I'm an honest, fairly forthright, not too too private kinda girl. If you know me at all, you know this.
Did you know you could say, "oh how I've missed you Michelle" "oh how I've missed your sweet baby we've little seen" "Is everything alright? " "I must have missed you in passing, so good to see you today" Did you know how much that would hug my heart?
I guess my pastor would probably say, "waaaah waaah waaah" , so whining time is over. Just some thoughts from a special needs mom trying to do the best she can.
We, as a family, have been living through some very difficult situations in the last seven months. All of it revolving around the health of a few of our kids. It has been HARD. I have landed in pits and struggled with my parenting. I have never stopped praying or seeking God in all of these days. While there may be some who view my lack of attendance at church as that...it is not. I have been told as much. Me and Jesus have talked about it. I have struggled will feeling offended by my friends and church family. Every time, I realize, it's about Him. It doesn't matter what other people think or say.
Did you know that your exaggerated, surprise appearance to my walking in the church was funny once, but after the third time it was difficult for me not to feel shamed. Did you know when you "re-introduced"yourself to me for the third time, it ceased to feel like a joke. Did you know when you asked me about my "annual church visit" for the second time I had trouble keeping a smile on my face and feeling loved?
Did you know that morning was only the second time this year I've gotten my husband to come to church. Did you know we were late because we couldn't get our child's feeding pump working properly and it took nearly twenty minutes to fix it? Did you know I was worried my medically fragile child might get sick just by bringing her into church? Did you know I battled tears as I felt there was no place for her during children's time eventually leaving her in the preschool room with three and four year olds? Did you realize I felt there was little connection with God because I was monitoring my toddler because I don't want him in the nursery for fear he will bring something home to his medically fragile child? Did you know we pulled our child out of church and school and large gatherings and she stopped being sick ALL THE TIME? Did you know I do trust God, and I believe He's given us discernment in all of this?
I'm an honest, fairly forthright, not too too private kinda girl. If you know me at all, you know this.
Did you know you could say, "oh how I've missed you Michelle" "oh how I've missed your sweet baby we've little seen" "Is everything alright? " "I must have missed you in passing, so good to see you today" Did you know how much that would hug my heart?
I guess my pastor would probably say, "waaaah waaah waaah" , so whining time is over. Just some thoughts from a special needs mom trying to do the best she can.
Sunday, May 17, 2015
Difficult days
Well, with near miss of the PICU, Lillian survived another round of pneumonia. It is so difficult to watch her suffer. As soon as I enter the room, my eyes are on monitor watch and I don't know about other moms, but for some reason I just can't peel my eyes off that monitor. Heart rate, breaths per minute, pulse ox....and when you are sitting in the room alone with a child that is nonverbal and quite honestly, too sick to care to interact, you are fixed on the monitor.
On top of hospitals being uncomfortable for your child, it is also uncomfortable for parents. It's isolating and depressing, escpecially when she is getting worse instead of better. Not to mention I'm already sleep deprived and going on x amount of days of worry. I kept telling myself that I knew, I knew there were multitudes of people praying for my sweet girl...I prayed. You know what I wished? I wish I could take even an ounce of my strength and pour it into her.
I'm so thankful my Mom was able to come a couple afternoons and sit with me and Matt came down a couple hours with the help of some friends. And if ever again someone offers to come sit with me and pray, I will NEVER turn it down. It is so hard to be alone in the hospital, maybe some people prefer it that way, but I'm telling you, I could have used some prayer intersessors with me. In body, not just in spirit.
So we came home after our six days and I knew it was probably wise to talk with the girls about how they were feeling. We had just finished dinner and I went around the table and asked them each what they worried about when Lillian got sick. One of the girls wouldn't even speak. One of them said what they were all thinking...they are afraid she will die. One girl said she worried about money and my stress. I sat here struggling with tears in my eyes trying to speak over the lump in my throat. I told them I knew without a shadow of a doubt we would never go hungry or be homeless. All I could say about the death part, is that it would be so difficult to walk through. I encouraged them to talk with us when they need to and if they didn't feel they could talk to one of us to talk to someone else. I told them, that in truth, each of us are the only ones that know what our life is and what our walk is like with Lillian. I told them that we loved them and each of them is just as important as the next one and we needed to make sure everyone got through these times relying on each other.
There are no easy paths on this walk, but this IS our path.
We had a week with Lillian trying to rebuild her stamina and then this past Monday Ezekiel woke up with croup. We are praying she does not succumb to anything as a result of this or anything she may have encountered while in the hospital.
On top of hospitals being uncomfortable for your child, it is also uncomfortable for parents. It's isolating and depressing, escpecially when she is getting worse instead of better. Not to mention I'm already sleep deprived and going on x amount of days of worry. I kept telling myself that I knew, I knew there were multitudes of people praying for my sweet girl...I prayed. You know what I wished? I wish I could take even an ounce of my strength and pour it into her.
I'm so thankful my Mom was able to come a couple afternoons and sit with me and Matt came down a couple hours with the help of some friends. And if ever again someone offers to come sit with me and pray, I will NEVER turn it down. It is so hard to be alone in the hospital, maybe some people prefer it that way, but I'm telling you, I could have used some prayer intersessors with me. In body, not just in spirit.
So we came home after our six days and I knew it was probably wise to talk with the girls about how they were feeling. We had just finished dinner and I went around the table and asked them each what they worried about when Lillian got sick. One of the girls wouldn't even speak. One of them said what they were all thinking...they are afraid she will die. One girl said she worried about money and my stress. I sat here struggling with tears in my eyes trying to speak over the lump in my throat. I told them I knew without a shadow of a doubt we would never go hungry or be homeless. All I could say about the death part, is that it would be so difficult to walk through. I encouraged them to talk with us when they need to and if they didn't feel they could talk to one of us to talk to someone else. I told them, that in truth, each of us are the only ones that know what our life is and what our walk is like with Lillian. I told them that we loved them and each of them is just as important as the next one and we needed to make sure everyone got through these times relying on each other.
There are no easy paths on this walk, but this IS our path.
We had a week with Lillian trying to rebuild her stamina and then this past Monday Ezekiel woke up with croup. We are praying she does not succumb to anything as a result of this or anything she may have encountered while in the hospital.
Monday, April 20, 2015
Dr Lungs checks in
Yesterday I just started dreading our trip to Louisville today. I knew there was lots of road construction...I didn't want to make the drive and honestly I was dreading what he might say. Well...as it turned out, God gave us merciful travel...we didn't have ANY delays or waits on the road. I mean I was thanking God all the way home for giving us such easy travel. We left two and half hours early just to make sure we made it on time. We made a quick stop for lunch and got to the office without incident.
When we finally got called back to a room, the first thing they check is her O2 sats. She as only satting 93/94..friends...that is NOT a good number. She always sats 98-100. I know you're thinking that's not a big difference, but in our world it is. That being said, she has been sick for about a month now. and her asthma has been flared to the point of retractions and that is also NOT good.
The doctor said her lungs sounded good, and he said her sinuses were badly swollen. So her ordered her a systemic antibiotic to hopefully get her over her sinus/ear/ upper airway infection.
They tried to get her to do a PFT. To do a PFT you have to be able to blow. Lillian can barely blow bubbles...so that test was out. So, he ordered another test called an IOS that is done on 3-7 year olds and it will be done at Kosair prior to her next appointment to check her pulmonary function.
We have noticed a marked difference in her level of activity so that gives us a bit of cause for concern. At this point he didn't think we needed to do a CT but it's likely coming as she hasn't had one since 2012. But hey, HOLLA...she hasn't had a CT since 2012!! WHOOP WHOOP!
So the day I dreaded so badly turned out very nicely and I'm so thankful It still makes for an awful long day and is for whatever reason extra exhausting...it doesn't help that Ezekiel cried and whined all the way home instead of napping which he did shortly after getting home.
On another note, I finally started her on the probiotic our kidney dr wanted her on and she's been taking it less than a month. She weighed two pounds less than when I had her at teh dr in January. Her stomach has also looked far less bloated and much more normal...something I was starting to grow very concerned about. (the bloated part..lol) So good news all around today, minus the fact that she's still struggling with sick/asthma junk.
When we finally got called back to a room, the first thing they check is her O2 sats. She as only satting 93/94..friends...that is NOT a good number. She always sats 98-100. I know you're thinking that's not a big difference, but in our world it is. That being said, she has been sick for about a month now. and her asthma has been flared to the point of retractions and that is also NOT good.
The doctor said her lungs sounded good, and he said her sinuses were badly swollen. So her ordered her a systemic antibiotic to hopefully get her over her sinus/ear/ upper airway infection.
They tried to get her to do a PFT. To do a PFT you have to be able to blow. Lillian can barely blow bubbles...so that test was out. So, he ordered another test called an IOS that is done on 3-7 year olds and it will be done at Kosair prior to her next appointment to check her pulmonary function.
We have noticed a marked difference in her level of activity so that gives us a bit of cause for concern. At this point he didn't think we needed to do a CT but it's likely coming as she hasn't had one since 2012. But hey, HOLLA...she hasn't had a CT since 2012!! WHOOP WHOOP!
So the day I dreaded so badly turned out very nicely and I'm so thankful It still makes for an awful long day and is for whatever reason extra exhausting...it doesn't help that Ezekiel cried and whined all the way home instead of napping which he did shortly after getting home.
On another note, I finally started her on the probiotic our kidney dr wanted her on and she's been taking it less than a month. She weighed two pounds less than when I had her at teh dr in January. Her stomach has also looked far less bloated and much more normal...something I was starting to grow very concerned about. (the bloated part..lol) So good news all around today, minus the fact that she's still struggling with sick/asthma junk.
Saturday, March 28, 2015
Scars
I see the marks left behind
Reminders of pain, physical for you
Emotional for me, harsh reminders of
the past...
It used to grieve me when I would see all those small puncture wounds in your groin. It reminded of the marks a sewing maching leaves behind in material. How did you endure so much? I'm sure I'll never understand it. I can't really comprehend it.
You struggled to breathe yesterday as we moved briskly though the cold and it struck me again how i'd forgotten you sometimes can't breathe. A little bit of panic running through my head. Asthma attacks scare me a bit. Even with today's modern medicine, children still die from asthma attacks.
I, once again, had fallen victim to feeling so normal. We had your hair cut and I wondered what the gal must have been thinking..maybe she wondered why you didn't speak in words and only in grunts. But I was silent. I just stood there holding your head when necessary. I took some pictures after wards and you were so tickled. You had the sweetest smile on your face and I noticed in the picture the scar on your neck. The forever reminder .I shudder at the recollections of those times.
I see the scars left behind
gentle reminders of hopeful days ahead.
Reminders of pain, physical for you
Emotional for me, harsh reminders of
the past...
It used to grieve me when I would see all those small puncture wounds in your groin. It reminded of the marks a sewing maching leaves behind in material. How did you endure so much? I'm sure I'll never understand it. I can't really comprehend it.
You struggled to breathe yesterday as we moved briskly though the cold and it struck me again how i'd forgotten you sometimes can't breathe. A little bit of panic running through my head. Asthma attacks scare me a bit. Even with today's modern medicine, children still die from asthma attacks.
I, once again, had fallen victim to feeling so normal. We had your hair cut and I wondered what the gal must have been thinking..maybe she wondered why you didn't speak in words and only in grunts. But I was silent. I just stood there holding your head when necessary. I took some pictures after wards and you were so tickled. You had the sweetest smile on your face and I noticed in the picture the scar on your neck. The forever reminder .I shudder at the recollections of those times.
I see the scars left behind
gentle reminders of hopeful days ahead.
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