Well, it seems we are overdue for an update on where we are. We have slowed things down a bit in our home. Well, at least as much as we are able to do with five kids. :) We don't want to be hermits, but a slower pace was definitely needed for our crew.
I'm just going to jump right in with my baby girl and give an update on what each girl is up to in this season.
Madi
Madi turned 6! She is quite proud to inform you of that as well. Madi is having a big year and doing amazingly well. She started kindergarten this fall, and while she was thrilled, mom was a bit apprehensive to hand over that sweet girl for 8 hours a day. We had been attached at the hip for almost 6 years. But what a change! She is thriving in school. She has made a lot of friends, and has a new confidence that could have only come without having mom or dad around.
She has graduated from hippotherapy to therapeutic riding. Basically, she gets to hold the reins and feel in charge of the horse. As you can imagine, she loves it. Really, there isn't much that she doesn't love. :)
We have also decided to pursue more testing to see if we can finally get some concrete answers. Her neurologist really feels that there is a genetic component to Madi's condition, so we are applying to the undiagnosed disease network. Hopefully, we are accepted and can find some more answers.
Dani
Oh my. Our wild child. She is still taking piano and enjoying it. I rarely have to nag her to practice. (That's a nice change for mom!) Dani tried volleyball this fall and did really well. It seems she holds more strength in those noodle arms than I gave her credit for. We may have many more years of volleyball ahead of us. :) She is our homebody and the most introverted of our clan. I think she is really enjoying how much we have slowed things down around here. Because of that she is able to spend a lot of time playing with her cousin and Madi.
Jessi
Jessi has benefited the most from slowing down. I encouraged (and when needed, forced) her to cut back on her activities this year. She loves to participate in a lot. Unfortunately, she is a perfectionist and the stress of not only participating, but also trying to be perfect was really taking a toll on her. She is prone to stress migraines. The migraines seemed to increasing in frequency and I missed my bubbly and giggly girl. She dropped several activities and has mentioned on more than one occasion that she isn't as stressed.
Sam
Our social butterfly, Sam, has blossomed this year! We decided to pursue some of her interests and get her involved in activities to help her develop some of her talents. She really loves to sing. We put her in voice lessons and she occasionally sings with our worship team at church. Her confidence has soared. She is being promoted to "band" at her Music school, and we are really looking forward to watching her continue to grow in confidence and skill.
It is also her last year at WEA before this girl starts high school. Be still my heart! It is crazy to think that I have two teenagers, and next year I will have 2 high schoolers!
Alex
Alex has been driving for a year now. Wow! That has been more of a blessing than I could have imagined. She is a junior this year, so we are looking at colleges and she has started filling out college scholarships. EXCUSE ME? I do not know how it is possible, but it is. She has a good head on her shoulders (though, she can still drive me bananas) and has grown into quite the young lady. We are so proud of her, her accomplishments, and can't wait to see where the next phase of life takes her.
Crystal
And me, well, I have benefited the most from slowing down. And that is what this year has been for this mom, a year of (mostly) rest. While it didn't start by choice, it quickly became apparent that I needed a time out.
It began last spring. I was suffering from pain in my shoulder. As I typically do, I just ignored it and kept pushing through. By June it was evident that the pain was not going to go away and was bad enough to wake me in the middle of the night. Butch insisted (like he is the boss or something) that I see the doctor. I was hesitant because frankly, I knew exactly what he would prescribe. Rest. And that is exactly what he told me to do for one week (including no housework!).
Resting does not come naturally to me. I am a doer, and being such, I find resting hard. I may have needed to be reminded on more than one occasion to sit down. Unfortunately, for me, one week of rest was not the cure. My shoulder was too inflamed and irritated from overuse, so mom got to try out occupational therapy. Much different being the patient, rather than the mom of the patient. OT meant more rest. Like WEEKS of rest. My kids did not love me, lol. They had to pick up the slack. And that is how our summer passed this year. A lot of forced down time. It was weird, but felt good.
And then school began. ALL the kids were in school ALL day. You have to understand, my day is typically broken up into 2 hour blocks. I always had somewhere to be, and I didn't have much control over that. This year, I suddenly had 6 unbroken hours to get things done! When I run errands, I am not rushing, and I stop to eat a real lunch at an actual table. I feel like I can catch my breath. I am also able to better rest my shoulder. I learned that a shoulder doesn't heal in a few weeks, and sometimes not even in a few months. (Poo on that) All around things were looking great.
I started to feel like something was off. The last time I felt this way, I learned that I no longer made testosterone and had to go on a supplement. So here I am, feeling like something is off, evaluating and trying to figure out what it could be. ( I never go to the doctor until I am sure there is a real problem, and have an idea what that problem is) Then it dawned on me. I was relaxed! Apparently, my body doesn't remember what that felt like, so I thought something was"wrong". That is both hysterical and sad. Instead of juggling 10 things at once, I am only juggling 3. It has made a world of difference for our family.
Butch
He is holding up surprisingly well in this house full of females. We haven't driven him crazy yet. Of course, we only have 2 teenagers at the moment. Give us a few years. ;)
Thursday, December 7, 2017
Monday, October 17, 2016
Miracle Madi turns 5!
(Before you read this post please bear in mind I am not a writer, so extend a little grace when you come upon my many grammatical errors. )
Well, I can hardly believe it, but my baby is turning 5. It's a big number for any baby in the family, but for our baby it's an even bigger milestone - one we weren't sure she would ever reach. For those of you new to our journey I'll give a brief outline to catch you up and save you the trouble of reading previous posts.
PCH is a genetic issue, so we met with a geneticist to do some testing (exome sequencing) and see if we could determine which type of PCH she has. All those tests came back negative for any known type of PCH.
We immediately started weekly physical and occupational therapy. Madi began to do all the things we weren't sure would ever be a reality for her. She sat at 14 months, started crawling at 20 months, speaking in simple sentences at 3, using a walker at 3, speaking in full sentences (that others could understand) at 4, and continues to astound every doctor she meets. Her medical file actually says "exceeds all expectations".
Since my last post- oh, about 2 years ago- there have been some new developments.
Somewhere along the way we realized that Madi just doesn't fit her diagnosis and began to do more research. We wanted a better idea of what was in store for her and for us. Butch came across an article (https://goo.gl/WbTL9r) about a Chinese woman who went to the ER with flu like symptoms and it was discovered that she had no cerebellum. She didn't walk till she was seven, didn't talk intelligibly till she was six, and had difficultly walking steadily her whole life. We were struck by the story and tried to get in contact with a specialist mentioned in the article. In short, we were eventually directed to a neurologist at John Hopkins in Maryland who specializes in the cerebellum. He believes that Madi likely has cerebellar agenesis caused by a stroke in utero.
So is it PCH or cerebellar agenesis? We don't really know and without doing an entire genome sequencing (mapping her entire DNA) we may never know if her condition is genetic or spontaneous.
This summer, Madi threw us another curve ball. We noticed that when she was hot, only one side of her head would sweat and turn red. She had a very distinct line separating one side of her face from the other. After our annual visit with the neurologist we discovered she has Horner's Syndrome. Thankfully, it is not serious, just one more condition to monitor.
Our love for this girl is immeasurable.
Well, I can hardly believe it, but my baby is turning 5. It's a big number for any baby in the family, but for our baby it's an even bigger milestone - one we weren't sure she would ever reach. For those of you new to our journey I'll give a brief outline to catch you up and save you the trouble of reading previous posts.
- Madilyn Jane Miller born October 18, 2011. A dark haired beauty born full term and without any complications. However, her first night in the nursery she was "jittery". They found this likely to be the sign of an immature neurological system. Basically, it was fine, she was fine. Take home your healthy baby.
- Shortly after arriving home I noticed Madi kept her hands fisted near her face. I was concerned, but we chalked it up to mommy stress.
- During Madi's 6 month checkup (April 2012) I relayed to the doctor some of my concerns. I believed she had strabismus (crossing of the eye), she wasn't sitting up yet, wasn't reaching for toys, her head sort of bobbled when she held it up, and those darn hands were still fisted A LOT. Our doctor became concerned when I brought up the fisted hands and he started doing a more thorough examination. He showed some concern and tried his best to hide it. He said she was "developmentally delayed" and wanted to see how she was at her 9 month check up. I began to realize my fears weren't just mommy stress. After doing my own research we requested a referral to see a specialist.
- Jump ahead a couple of months and we finally see a specialist at Children's Mercy. He actually wasn't overly concerned with Madi and felt that her issues were "mild" and wanted to monitor her development. We pushed for an MRI. He consented and we had one in June of 2012.
- Her MRI was on a Friday and we received the call Monday morning. He began with "Mrs. Miller it's bad, really, really, bad. I've never seen anything like it." I wish I could tell you the rest of the conversation, but my brain sort of shut down at that point. I was flying on auto pilot. He believed Madi had Pontocerebellar Hypoplasia (PCH). He asked us not to research it and to come in for a consult to discuss her diagnosis. As you can see in the photo below Madi doesn't really have a cerebellum. There is only a hairline structure shaped somewhat like a backward C. The "pons" is a bump-out on the top of the spinal cord and she is missing that as well. In fact, it looks like it actually curves inward. The prognosis for this condition is bleak. He immediately asked to set us up with their palliative care team. They work with families whose child's life expectancy is less than 5 years.
PCH is a genetic issue, so we met with a geneticist to do some testing (exome sequencing) and see if we could determine which type of PCH she has. All those tests came back negative for any known type of PCH.
We immediately started weekly physical and occupational therapy. Madi began to do all the things we weren't sure would ever be a reality for her. She sat at 14 months, started crawling at 20 months, speaking in simple sentences at 3, using a walker at 3, speaking in full sentences (that others could understand) at 4, and continues to astound every doctor she meets. Her medical file actually says "exceeds all expectations".
Since my last post- oh, about 2 years ago- there have been some new developments.
Somewhere along the way we realized that Madi just doesn't fit her diagnosis and began to do more research. We wanted a better idea of what was in store for her and for us. Butch came across an article (https://goo.gl/WbTL9r) about a Chinese woman who went to the ER with flu like symptoms and it was discovered that she had no cerebellum. She didn't walk till she was seven, didn't talk intelligibly till she was six, and had difficultly walking steadily her whole life. We were struck by the story and tried to get in contact with a specialist mentioned in the article. In short, we were eventually directed to a neurologist at John Hopkins in Maryland who specializes in the cerebellum. He believes that Madi likely has cerebellar agenesis caused by a stroke in utero.
So is it PCH or cerebellar agenesis? We don't really know and without doing an entire genome sequencing (mapping her entire DNA) we may never know if her condition is genetic or spontaneous.
This summer, Madi threw us another curve ball. We noticed that when she was hot, only one side of her head would sweat and turn red. She had a very distinct line separating one side of her face from the other. After our annual visit with the neurologist we discovered she has Horner's Syndrome. Thankfully, it is not serious, just one more condition to monitor.
Currently, she is in pre-k and doing great. She is learning, playing, and making new friends. It is a joy to watch her interact with her peers and it is the highlight of her day.
If you have met Madi, you have met one in a billion or trillion or gazillion. I don't know if there is number high enough. She is truly one of a kind. She charms the socks off of anyone she meets, and her smile lights up a room. She is funny, ornery, and the cutest kid you'll ever meet.
Our love for this girl is immeasurable.
Monday, October 27, 2014
Madi's 3
Well, the husband ( he will now be referred to as such) has decided that since Madi has turned 3 we need to update the blog. Because, you know, I am NOT a writer and I am kind of slacking with this blogging thing.
Madi is 3. That's right. Miracle baby turned 3 and with it came a few changes! But, I digress, let's go back and do this thing chronologically, or at least as much as I am able to do so.
In my last post I mentioned a walker. Man, was I ever emotional over that thing. Yes, it arrived. Yes, we are using it, but it has taken some getting used to. As much as I love that thing and the freedom it provides for Madi, I also despise the inconvenience of that darn thing! Madi took to it pretty well. She likes being able to walk upright and wave and smile at people.
(She's pretty cute too.)
Imagine letting your 5 year old drive. Inconceivable, right? Well, Madi has to learn to drive this thing. She is learning to steer without running over toes, people, or into walls. It's a big task, but she is taking to it like a champ. Like she seems to do with any challenge she has been presented.
She hasn't really achieved any great visible milestones. She has really been concentrating on her speech since the spring. What a joy it is to hear those babbles turn into words or phrases that I can understand. That OTHERS can understand! We weren't sure if she would be able to do this, so we are over the moon with every new word or sound we hear. (ok, sometimes the screams for "Mom, Mom, Mom" are annoying, but only in the moment. Most of the time the sound of her voice makes me smile.)
Our latest milestone. PRESCHOOL. Yep, you read that right. Preschool. My baby is in preschool! She goes 3 times a week for 2 1/2 hours. (Please, don't ask me what I do with myself! I have 6 children in this house, not including the husband. I have plenty to do) The transition went much smoother than expected. For those of you who see Madi, you know how attached she is to Butch and I. I thought that she would cry and scream and throw a tantrum the entire time! In fact, that first morning when I dropped her off, she was screaming with her limbs flailing. I made it half way down the hall before I was balling. I felt horrible. In fact, most of that morning I spent wondering if she ever calmed down.
When I arrived at the school to pick her up, expecting to see tears, there she was with a huge smile on her face. She had a great day at school. The teacher informed me that she spent less than a minute crying. Apparently, as soon as I made it out of the building she quit screaming and sat down to play with play doh. That easy. For her. Since that first morning there hasn't been a single tear or tantrum at drop off. She is super excited to go to school and see her friends. She walks in, sits down at her activity center, and doesn't even notice when I leave. She loves school, and we are excited that she has started speech therapy. I can't wait to see the progress she makes.
This road with Madi has been both terrifying and amazing. When I think back to her diagnosis and the overwhelming fear I felt for her and about her future, I can't believe how much has learned and is able to do.
There's a song by Steven Curtis Chapman that came out not to long ago. It's called Glorious Unfolding. Whenever I hear that song, I think of Madi.
Here's a snippet of the lyrics.
And the story has only begun
here's a link to the video on godtube (yes that's real)
http://www.godtube.com/watch/?v=W676WLNX
I think that song truly reflects how I see Madi. I was terrified when she was diagnosed and afraid of what her future looked like. I was afraid to hope for miracles or for more than what the textbooks said her life could be. I lived with this fear and anxiety of how she would grow, of what her life would be like, but her life has been this glorious unfolding of hopes realized. Hopes I was almost afraid to dream.
I think this song is our new anthem. Her story should have been the video! Wouldn't that have been awesome?
Here's another picture of the stinker, because, let's be honest, she's adorable!
Madi is 3. That's right. Miracle baby turned 3 and with it came a few changes! But, I digress, let's go back and do this thing chronologically, or at least as much as I am able to do so.
In my last post I mentioned a walker. Man, was I ever emotional over that thing. Yes, it arrived. Yes, we are using it, but it has taken some getting used to. As much as I love that thing and the freedom it provides for Madi, I also despise the inconvenience of that darn thing! Madi took to it pretty well. She likes being able to walk upright and wave and smile at people.
(She's pretty cute too.)
Imagine letting your 5 year old drive. Inconceivable, right? Well, Madi has to learn to drive this thing. She is learning to steer without running over toes, people, or into walls. It's a big task, but she is taking to it like a champ. Like she seems to do with any challenge she has been presented.
She hasn't really achieved any great visible milestones. She has really been concentrating on her speech since the spring. What a joy it is to hear those babbles turn into words or phrases that I can understand. That OTHERS can understand! We weren't sure if she would be able to do this, so we are over the moon with every new word or sound we hear. (ok, sometimes the screams for "Mom, Mom, Mom" are annoying, but only in the moment. Most of the time the sound of her voice makes me smile.)
Our latest milestone. PRESCHOOL. Yep, you read that right. Preschool. My baby is in preschool! She goes 3 times a week for 2 1/2 hours. (Please, don't ask me what I do with myself! I have 6 children in this house, not including the husband. I have plenty to do) The transition went much smoother than expected. For those of you who see Madi, you know how attached she is to Butch and I. I thought that she would cry and scream and throw a tantrum the entire time! In fact, that first morning when I dropped her off, she was screaming with her limbs flailing. I made it half way down the hall before I was balling. I felt horrible. In fact, most of that morning I spent wondering if she ever calmed down.
When I arrived at the school to pick her up, expecting to see tears, there she was with a huge smile on her face. She had a great day at school. The teacher informed me that she spent less than a minute crying. Apparently, as soon as I made it out of the building she quit screaming and sat down to play with play doh. That easy. For her. Since that first morning there hasn't been a single tear or tantrum at drop off. She is super excited to go to school and see her friends. She walks in, sits down at her activity center, and doesn't even notice when I leave. She loves school, and we are excited that she has started speech therapy. I can't wait to see the progress she makes.
This road with Madi has been both terrifying and amazing. When I think back to her diagnosis and the overwhelming fear I felt for her and about her future, I can't believe how much has learned and is able to do.
There's a song by Steven Curtis Chapman that came out not to long ago. It's called Glorious Unfolding. Whenever I hear that song, I think of Madi.
Here's a snippet of the lyrics.
Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold
And this is going to be a glorious unfolding
Just you wait and SEE and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding
God’s plan from the start
For this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of
His unfailing Love
And the story has only begun
here's a link to the video on godtube (yes that's real)
http://www.godtube.com/watch/?v=W676WLNX
I think that song truly reflects how I see Madi. I was terrified when she was diagnosed and afraid of what her future looked like. I was afraid to hope for miracles or for more than what the textbooks said her life could be. I lived with this fear and anxiety of how she would grow, of what her life would be like, but her life has been this glorious unfolding of hopes realized. Hopes I was almost afraid to dream.
I think this song is our new anthem. Her story should have been the video! Wouldn't that have been awesome?
Here's another picture of the stinker, because, let's be honest, she's adorable!
Monday, March 17, 2014
EEG and EKG results
We have had a busy start to March in the Miller household. On the 5th, Madi had an EEG test. This reads electrical activity of the brain and can help determine whether or not your child has seizures. Butch and I requested that the test be done after several episodes that we believe were mild seizures. For kids Madi's age, the EEG had to be a sleep deprivation test! Yay for only four hours of sleep! Ok, that was sarcasm. Keeping a two year old awake until midnight is not an easy task, especially when they start yawning at 10pm and keep repeatedly saying, "Night night". Then you have to wake them up at 4am and keep them awake until the test is performed. Thankfully, Madi handled the whole thing fairly well. Much better than I anticipated. She has a lot of patience for enduring these doctor visits.
We received the results of those tests on the 10th. She had one abnormal reading that was typical of patients with epilepsy. However, the neurologist did say that some kids tested can have this show up on the results and they are not epileptic, so we would need to do more testing to determine whether or not she has epilepsy. Butch and I have only noticed 3-4 episodes in the past 2-3 months. They are very brief. Our neurologist doesn't feel that we need to do further testing at this time. We are to keep a detailed journal of these episodes and then we will discuss things further when we see him in May. At that appointment we will decide how to proceed.
Also on the 10th, we had an EKG and an ultrasound of the heart. Our geneticist wanted this test done to rule out other diagnoses. Many conditions with abnormalities of the brain also include abnormalities of the heart. We tried to do this test a year ago and Madi refused to cooperate. What a difference a year makes! Thankfully, you don't have to wait for the test results. The cardiologist found nothing wrong with her heart. One more doctor we can cross off our list!! We only have to go back if Madi is later diagnosed with a condition that sees a decrease in heart function as the child ages or a thickening of the heart muscle.
Obviously, not all the test results were as we would have wanted, but we weren't surprised either.
For all my prayer partners out there- my prayer right now is that we would not see an increase in these "episodes" that we believe to be seizures, and that if Madi is later diagnosed with epilepsy that she would not need to be medicated.
On a side note, our walker arrives this week (19th). It has "only" taken six months since the doctor gave the orders for one for it to get here, but I'll be blogging about that transition soon.
We received the results of those tests on the 10th. She had one abnormal reading that was typical of patients with epilepsy. However, the neurologist did say that some kids tested can have this show up on the results and they are not epileptic, so we would need to do more testing to determine whether or not she has epilepsy. Butch and I have only noticed 3-4 episodes in the past 2-3 months. They are very brief. Our neurologist doesn't feel that we need to do further testing at this time. We are to keep a detailed journal of these episodes and then we will discuss things further when we see him in May. At that appointment we will decide how to proceed.
Also on the 10th, we had an EKG and an ultrasound of the heart. Our geneticist wanted this test done to rule out other diagnoses. Many conditions with abnormalities of the brain also include abnormalities of the heart. We tried to do this test a year ago and Madi refused to cooperate. What a difference a year makes! Thankfully, you don't have to wait for the test results. The cardiologist found nothing wrong with her heart. One more doctor we can cross off our list!! We only have to go back if Madi is later diagnosed with a condition that sees a decrease in heart function as the child ages or a thickening of the heart muscle.
Obviously, not all the test results were as we would have wanted, but we weren't surprised either.
For all my prayer partners out there- my prayer right now is that we would not see an increase in these "episodes" that we believe to be seizures, and that if Madi is later diagnosed with epilepsy that she would not need to be medicated.
On a side note, our walker arrives this week (19th). It has "only" taken six months since the doctor gave the orders for one for it to get here, but I'll be blogging about that transition soon.
Thursday, December 19, 2013
A momma just knows part 1
This blog was initially meant to be about Madi, but I think I need to shine a light on the other medical condition that we deal with on a daily basis, type 1 diabetes.
It's a long story, so you probably better settle in!
Sam was five years old and in kindergarten when the symptoms of diabetes started to present themselves, but we didn't recognize them for what they were. I kept attributing them to other things. For example, Sam was falling asleep on the way home from school. Since it was her first year of being in school all day I just figured she was worn out from all the activity. It didn't dawn on me that by Christmas time she really should have been adjusted to the routine and not so tired. Another thing I noticed that struck me as odd, she began to immediately ask for a snack when we arrived home. Sometimes asking what she could have before she was even out of the car. I remember thinking to myself, "Oh, she is tired and hungry, she does look a little thinner too. I bet she is just having a growth spurt!" She was also having accidents at school, not frequently, but just enough to cause concern. I attributed the accidents to busyness and wanting to play with the kids. That going to the bathroom would be too much trouble because it would tear her away from her friends. By this time I was paying a bit more attention because I felt something was off, but I couldn't pinpoint the problem. I mean, my kid is a little tired and hungrier than usual, that doesn't seem like a big deal. Put her to bed a little earlier and make sure she is getting plenty to eat.
Then at home I noticed she was drinking A LOT! She was constantly complaining of thirst and asking for more to drink. One night she had two glasses of milk and a glass of water with her dinner. Dinner typically takes us less than 30 min, so I thought it was odd, but mostly ignored it. We immediately left for a church activity and upon arrival she told she was really thirsty and asked if she could get a drink out of the water fountain. I remember wondering how on earth she could be thirsty when she had just consumed three glasses at home. She had also been getting up in the night to use the restroom. Sam had never been up in the night to use the restroom since we had potty trained her. This was completely out of the norm for her. These nightly trips to the bathroom quickly became a regular thing. Butch and I both realized something had to be wrong, but these things seem so mild that we just couldn't figure what in the world could be going on.
Finally, sometime around Valentine's Day I remembered something I had read in The Mitford Series, by Jan Karon. This series is about a pastor who suffered from Type 2 diabetes. Whenever his blood sugar was high he had symptoms similar to what Sam was dealing with. I knew enough about type 2 diabetes to know that she didn't have this, but I started to wonder if you had the same symptoms with type 1 diabetes. I did some research and realized it doesn't matter what type of diabetes you have when your blood sugar is high or low we all experience similar symptoms. I knew then that she may have it and we needed to get her checked out. I sent the information to Butch, he agreed and I made a doctor's appointment for the following week.
The thing is, as a mom who doesn't have a medical degree, I began to doubt myself. That Thursday I made Sam's appointment for the following week because they couldn't get us in any sooner. Over the weekend Sam's symptoms didn't seem so bad. She wasn't drinking as much, she wasn't asking for food, and she wasn't falling asleep as easily. I seriously considered cancelling her appointment for the following week thinking I was just being paranoid. As I was sitting there contemplating about canceling this appointment, I remember thinking, "I would rather look stupid" So what if the doctor thinks I am crazy. I needed to know that I was wrong. I needed her to be tested to ease my mind. I just needed to know.
The following week I took Sam to the doctor and asked him to test her for diabetes. I think he looked at me like I had sprouted horns. He remarked that she did look tired and like she had lost her
"sparkle", but it was probably just anemia. I was adamant that she have a test done for diabetes and he agreed to do a basic lab work up that included looking at her blood sugars.
When the results were in they called to let us know that Sam had hyperglycemia and she would need to go to the hospital and see a specialist the next week. I remember the sense of immense relief I felt. It wasn't diabetes, it was just hyperglycemia. I had no idea what that was, but I figured it had to better than diabetes! Later that same day, there was a message on my machine asking me to call the doctors office immediately and not wait until the next business day. I called the nurse back and she informed me that the specialist said I needed to go to the emergency room immediately, today, now! So, I dropped the other three girls off at their godparents home, met Butch and immediately headed for the hospital. As a mom, I was in a panic. I was not told why I needed to go to the hospital, just that I needed to go NOW.
Once we arrived at the ER we checked in, though we couldn't explain to the clerk why we were there. We just informed them that we had been instructed to go immediately. Once we were in a room the doctor came back and examined Sam and even HE was initially unsure why we there. Finally, after he spoke with the doctors that had given the orders for us to go to the emergency room he informed us that Sam had diabetes and they wanted to admit her. Umm, excuse me? I was in shock, my worst fear was a reality.
We spent the next two days in the hospital learning how to care for Sam, while the doctors figured out the proper ratio for her insulin. That first night was rough. It was almost midnight before we got to a room in the diabetic wing. Poor Sam was exhausted, traumatized because they had to do blood work, and starving because we hadn't had dinner and they would only give her meat and cheese. They were figuring out which insulin to give her and how much she would need so she wasn't allowed any carbs.
The next morning after very little sleep and very little time to absorb what this means, no less than 6 doctors came in and discussed with me her diagnosis and why we were in the hospital. Seeing that many doctors walk into your child's hospital room is shocking. I broke down and sobbed in front of a room full of strangers. Did I mention I hate crying in front of people?!
Thankfully, Sam wasn't really sick. The doctors informed me that most kids are in the ICU when they are first diagnosed because they have gone untreated and misdiagnosed for too long. Sam was "lucky" because we caught it early and she didn't NEED to be in the hospital, but her dad and I did need to learn how to care for her. Butch and I spent the next two days learning about type 1 diabetes, how to count carbs, and how to give injections. In fact, the first class we took was on how to give an injection. They do this so that you can immediately begin to give them their insulin shots yourself with a nurse there to help and make sure you are doing it right before going home.
My parents came up and brought her gifts, my pastor stopped in and prayed with her (we were in a class when he stopped by), and an amazing woman who attends my church and also has a daughter with the same condition stopped in and offered us support as well. It was a crazy couple of days and I was tired of the hospital, but I was more terrified of going home. I was worried I would do something wrong or my math would be incorrect and I would kill her. Yes, I was worried that I would kill my own daughter because of my ignorance. I can't begin to describe the stress.
On the second day we left the hospital just before dinner time. Butch was taking Sam home and I was going to stop at the pharmacy to get her presciptions and pick up the other three girls. While at the pharmacy, I still remember the look on the pharmacists face, the sympathy in his eyes, when he asked me "Are you gonna be ok?" I told him yes, but I remember thinking, NO, I am not okay!
I'll be honest that first night at home was rough. When we went to give Sam her injection so she could eat her dinner, she looked at me with tears in those big brown eyes of hers and said, " I thought I was done with the shots?" Five year olds just don't comprehend forever very well and that's when I began to realize that maybe we hadn't prepared Sam as well for going home as well as we had been prepared ourselves. The clincher for me was when she ran across the room yelling at her sister, "No, don't touch those, you'll get diabetes!" She was referring to the Barbies my parents had given her to play with while in the hospital. My heart tore in two when we were told she had diabetes, but it felt like my heart shattered when I heard her yell that. It was a true physical ache I felt in my chest for my child.
To be continued...
It's a long story, so you probably better settle in!
Sam was five years old and in kindergarten when the symptoms of diabetes started to present themselves, but we didn't recognize them for what they were. I kept attributing them to other things. For example, Sam was falling asleep on the way home from school. Since it was her first year of being in school all day I just figured she was worn out from all the activity. It didn't dawn on me that by Christmas time she really should have been adjusted to the routine and not so tired. Another thing I noticed that struck me as odd, she began to immediately ask for a snack when we arrived home. Sometimes asking what she could have before she was even out of the car. I remember thinking to myself, "Oh, she is tired and hungry, she does look a little thinner too. I bet she is just having a growth spurt!" She was also having accidents at school, not frequently, but just enough to cause concern. I attributed the accidents to busyness and wanting to play with the kids. That going to the bathroom would be too much trouble because it would tear her away from her friends. By this time I was paying a bit more attention because I felt something was off, but I couldn't pinpoint the problem. I mean, my kid is a little tired and hungrier than usual, that doesn't seem like a big deal. Put her to bed a little earlier and make sure she is getting plenty to eat.
Then at home I noticed she was drinking A LOT! She was constantly complaining of thirst and asking for more to drink. One night she had two glasses of milk and a glass of water with her dinner. Dinner typically takes us less than 30 min, so I thought it was odd, but mostly ignored it. We immediately left for a church activity and upon arrival she told she was really thirsty and asked if she could get a drink out of the water fountain. I remember wondering how on earth she could be thirsty when she had just consumed three glasses at home. She had also been getting up in the night to use the restroom. Sam had never been up in the night to use the restroom since we had potty trained her. This was completely out of the norm for her. These nightly trips to the bathroom quickly became a regular thing. Butch and I both realized something had to be wrong, but these things seem so mild that we just couldn't figure what in the world could be going on.
Finally, sometime around Valentine's Day I remembered something I had read in The Mitford Series, by Jan Karon. This series is about a pastor who suffered from Type 2 diabetes. Whenever his blood sugar was high he had symptoms similar to what Sam was dealing with. I knew enough about type 2 diabetes to know that she didn't have this, but I started to wonder if you had the same symptoms with type 1 diabetes. I did some research and realized it doesn't matter what type of diabetes you have when your blood sugar is high or low we all experience similar symptoms. I knew then that she may have it and we needed to get her checked out. I sent the information to Butch, he agreed and I made a doctor's appointment for the following week.
The thing is, as a mom who doesn't have a medical degree, I began to doubt myself. That Thursday I made Sam's appointment for the following week because they couldn't get us in any sooner. Over the weekend Sam's symptoms didn't seem so bad. She wasn't drinking as much, she wasn't asking for food, and she wasn't falling asleep as easily. I seriously considered cancelling her appointment for the following week thinking I was just being paranoid. As I was sitting there contemplating about canceling this appointment, I remember thinking, "I would rather look stupid" So what if the doctor thinks I am crazy. I needed to know that I was wrong. I needed her to be tested to ease my mind. I just needed to know.
The following week I took Sam to the doctor and asked him to test her for diabetes. I think he looked at me like I had sprouted horns. He remarked that she did look tired and like she had lost her
"sparkle", but it was probably just anemia. I was adamant that she have a test done for diabetes and he agreed to do a basic lab work up that included looking at her blood sugars.
When the results were in they called to let us know that Sam had hyperglycemia and she would need to go to the hospital and see a specialist the next week. I remember the sense of immense relief I felt. It wasn't diabetes, it was just hyperglycemia. I had no idea what that was, but I figured it had to better than diabetes! Later that same day, there was a message on my machine asking me to call the doctors office immediately and not wait until the next business day. I called the nurse back and she informed me that the specialist said I needed to go to the emergency room immediately, today, now! So, I dropped the other three girls off at their godparents home, met Butch and immediately headed for the hospital. As a mom, I was in a panic. I was not told why I needed to go to the hospital, just that I needed to go NOW.
Once we arrived at the ER we checked in, though we couldn't explain to the clerk why we were there. We just informed them that we had been instructed to go immediately. Once we were in a room the doctor came back and examined Sam and even HE was initially unsure why we there. Finally, after he spoke with the doctors that had given the orders for us to go to the emergency room he informed us that Sam had diabetes and they wanted to admit her. Umm, excuse me? I was in shock, my worst fear was a reality.
We spent the next two days in the hospital learning how to care for Sam, while the doctors figured out the proper ratio for her insulin. That first night was rough. It was almost midnight before we got to a room in the diabetic wing. Poor Sam was exhausted, traumatized because they had to do blood work, and starving because we hadn't had dinner and they would only give her meat and cheese. They were figuring out which insulin to give her and how much she would need so she wasn't allowed any carbs.
The next morning after very little sleep and very little time to absorb what this means, no less than 6 doctors came in and discussed with me her diagnosis and why we were in the hospital. Seeing that many doctors walk into your child's hospital room is shocking. I broke down and sobbed in front of a room full of strangers. Did I mention I hate crying in front of people?!
Thankfully, Sam wasn't really sick. The doctors informed me that most kids are in the ICU when they are first diagnosed because they have gone untreated and misdiagnosed for too long. Sam was "lucky" because we caught it early and she didn't NEED to be in the hospital, but her dad and I did need to learn how to care for her. Butch and I spent the next two days learning about type 1 diabetes, how to count carbs, and how to give injections. In fact, the first class we took was on how to give an injection. They do this so that you can immediately begin to give them their insulin shots yourself with a nurse there to help and make sure you are doing it right before going home.
My parents came up and brought her gifts, my pastor stopped in and prayed with her (we were in a class when he stopped by), and an amazing woman who attends my church and also has a daughter with the same condition stopped in and offered us support as well. It was a crazy couple of days and I was tired of the hospital, but I was more terrified of going home. I was worried I would do something wrong or my math would be incorrect and I would kill her. Yes, I was worried that I would kill my own daughter because of my ignorance. I can't begin to describe the stress.
On the second day we left the hospital just before dinner time. Butch was taking Sam home and I was going to stop at the pharmacy to get her presciptions and pick up the other three girls. While at the pharmacy, I still remember the look on the pharmacists face, the sympathy in his eyes, when he asked me "Are you gonna be ok?" I told him yes, but I remember thinking, NO, I am not okay!
I'll be honest that first night at home was rough. When we went to give Sam her injection so she could eat her dinner, she looked at me with tears in those big brown eyes of hers and said, " I thought I was done with the shots?" Five year olds just don't comprehend forever very well and that's when I began to realize that maybe we hadn't prepared Sam as well for going home as well as we had been prepared ourselves. The clincher for me was when she ran across the room yelling at her sister, "No, don't touch those, you'll get diabetes!" She was referring to the Barbies my parents had given her to play with while in the hospital. My heart tore in two when we were told she had diabetes, but it felt like my heart shattered when I heard her yell that. It was a true physical ache I felt in my chest for my child.
To be continued...
Joy in the midst of grief
I have a digital photo frame that has photos from the last ten years. While watching the photos fade from one to the other I began to realize that there are so many things that Madi will never do. Things such as riding a bike without training wheels for the first time, roller skating with her sisters, and climbing around on a playground. Simple things, that we all too often take for granted. Oh, I know the big things she may never do and I accept those, but I forget about the little things. Sometimes, I only recognize those things as we begin to approach the age when she would typically be able to do them. It is a little stinger, a reminder of the things I had looked forward to doing with her when I was pregnant. Those little fantasies that played out in my head of what life will be like once the baby arrives and our family was complete. All those little moments I wanted to share with Madi. Then reality sets in and you have to adjust those ideas and plans, and that isn't always easy. Sadly, as time passes I realize that I didn't even begin to comprehend how this condition would impact our daughter or our lives. As time passes, and we reach new milestones, new realities set in.
Madi turned 2 in October and we began the process of ordering a walker/gait trainer. This has hit me really hard for some reason. I found myself crying at the THOUGHT of bringing one into our home. You would think that all those tears you shed when your child was first diagnosed would have been enough. ( I even caught my husband off guard with my crying one morning. Poor guy.) I don't fully understand why I am so emotional about this, because we have had one on loan for 6 or 7 months now. Maybe it was the fact that we only had that one temporarily and I knew we would give it back, or the hope that she wouldn't really need one of her own. I don't know. I just didn't realize how much this next step would affect me. The next walker is OURS, the permanence of it, and the fact that we will have to learn how to operate it, and haul it around, is scary.
The reality that she is "different" will be apparent. People will be able to look at her and realize she is different. They may even ask questions or comment about her. I am not ready for the stares, pointing, and whispering that will go along with having the walker out in public. I know some people are curious and they don't mean to do these things. They probably aren't even aware of what they are doing. Then there are the others. The ones who do those things just to be mean, and the ones who may even make fun of her. It hurts to realize that I can't shield her from these things.
This is where the joy creeps in and begins to take over. You probably think I am crazy. Joy? Joy? Yes, JOY. It's a joy born of thankfulness. I am so thankful that she is mentally and physically able to learn how to use this walker. Not every child like her has this ability. I am thankful for her sweet smile, her giggles, for the times when she says, "ug", and then leans in and wraps her arms around me. I am thankful for the feel of her warm body next to mine as we cuddle on the couch. I love the way her eyes light up when she sees me. All these things and more make me so thankful for her and the love she brings to our lives and our family. If that means adapting our life to her needs, then so be it.
So we'll deal with this next step like we have all the others. Lots of prayer, love, and support. And even though my heart hurts for this child of mine, we'll do it with a smile on our faces. We smile because we know how truly blessed we are, because we are so grateful for all that she is able to do, and we smile because God has surpassed all our hopes and expectations. He continues to do so on a daily basis. The joy, no matter how small or overwhelmed by my momentary sorrow, can't be contained and will only continue to grow.
Life without this little girl is unimaginable.
Thursday, January 31, 2013
Updates
Madi is doing a lot of great things. Without internet it has been a challenge to keep everyone updated. Sitting here waiting for her to get out of therapy I realized I have internet access and a few minutes of peace to hopefully give a quick rundown of where we are in her progress.
Madi learned to get to a sitting position on her own on November 5th, and how wonderful it was to witness this new skill. Unfortunately, every new skill brings its own set of new challenges. Madi cannot stay in a sitting position on her own and easily falls over. She can no longer be left on the floor to play because she can fall over and hurt herself. Now we have what I call her crash helmet! A cute pink foam helmet to protect her head if she falls over and I don't catch her quick enough.
Being unable to put her on the floor to play is frustrating for Madi and me. She wants to do the things all other fifteen month olds want to do. She wants to get around and explore table tops, get into containers and cabinets, and follow me around the house. She can't do any of these things on her own, so she expects me or Grandma, or dad to do these things for her. There is no way to make her understand that I can't hold her 24/7 and she tends to throw some tantrums!
We were recently measured for some sure steps. These are a type of brace for her ankle that will help her to walk. I am very excited to see how she does with these. We should have them sometime next month and later this year we will be getting a special walker for her to use.
She is also saying a couple of words. She doesn't use them often, but I am thrilled! I have read that it is common for kids with her condition to not have a form of communication. So any words or hand gestures that she uses keep me hopeful.
Love to you all and thank you for your continued prayers!
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