I think that making it to 2 years old was a HUGE milestone for Mackinley and our whole family and we should thank everyone who has helped us along the way.
First of all we need to thank all of our family out there, they have embraced Mac since the minute he was born and have helped us through the toughest of days. Our parents, aunts, uncles, cousins, brothers, nieces and nephews are amazing and we wouldn't be here without their love and support.
On the most tear stained days and nights I know I can always turn to Allie. She is all the way on the other side of the country and we have never met in person - although last night I did have a dream we went jeans shopping together - but she understands everything we are going through. When I say I feel so alone the truth is I do, but I know there is at least 1 person who makes this solo trip into a group effort. I feel so lucky to have met her through babycenter.com and I hope that one day our little miracle kids can meet. Thanks for keeping me grounded and on my toes.
Not many people would sit down and write a blog post to thank their medical professionals...but not many people have had to rely on them as much as we have. Mackinley has his pediatrician, endocrinologist, urologist, neurologist, physical therapist, speech therapist and post pardum nurse to thank for being here today.
Pediatrics: Dr. Gary Spector
THE MOST AMAZING PEDIATRICIAN in the world. He has made us laugh and cry and always lets us know we are doing a great job. It was by chance that we found him and when my labor nurse told me he wasn't taking new patients I about forced her at gun point to enter his name in the computer. Good thing I did. We had met with him a mere week before Mackinley came and he was the only doctor we would consider trusting with our baby. He hasn't failed us yet.
Endocrinology: Dr. Gad Kletter
With his phone always buzzing and EXTREME knowledge of everything medicine sometimes it is hard to know if he is coming or going but he is such a wealth of knowledge we feel lucky to have met him. If we hadn't met Dr. Kletter we may not know that McDonald's uses soy to enhance it's flavors and with Mac's medications soy will hinder the effectiveness so he should never eat McDonald's for breakfast. We may also never have known that the liquid form of hydrocortisone the hospital pharmacy sent home with us was unstable and should not by used. Why? There is a tree in Iraq that is used in the mix to stablize the medicine, since the war began it is in short supply and no longer used...hence it not being safe to use. Who knows this stuff???
Urology: Dr. Beth Anderson
Luckily we only had to see Dr. Anderson for a few months for 3 rounds of testosterone shots and surgery. She is a wonderful urologist, very to the point and has a great bedside manner, and if we had to see her again in the future we would feel safe in her hands. Mackinley's routine surgery took a few twists and turns and ran almost 3 hours instead of 45 minutes but when it was all said and done we were glad it was taken care of when he was young enough to not remember.
Neurology: Dr. Lauren Plawner
We are just getting into our medical journey with Dr. Plawner and we really enjoyed our first appointment with her. Mackinley will be having an MRI and full genetic work up done soon. He had an MRI when he was 5 days old and apparently newborns brains are still very "watery" then so most of the images are hard to see. We are hoping that this will help us put some more pieces of the puzzle together.
Physical therapy: Mali Olsen, PT, DPT
We really like our time with Mali. Mackinley saw her once a week for about 12 weeks and has been back for 3 re-evaluations...we wish we could still see her every week because we like her so much! She helped Mac learn how to crawl and eventually walk!
Speech therapy: Alison Lombardi, M.S., CCC-SLP
Mackinley has been seeing Alison for about 5 weeks now and has made mounds of progress. We are still way behind the other kids but we can't ignore the huge amount of progress we have made. Our insurance won't cover speech therapy so we were referred to a Birth to 3 program and ended up going with the Northwest Center. Alison visits our home once a week and all of our therapy is play based. Mac seems to enjoy showing her his magnets and trains.
Post pardum: Gina Rosengrant
Gina is the one person I give thanks to for saving Mackinley's life at not even one day old. She is passionate, quick thinking, smart beyond her years and most of all she really cares about Mac. We see Gina every few months and in between those times every time she bumps into Dr. Spector she gets a full update. We love that she is still in our lives and I can't imagine the outcome had she not been our nurse.
Saturday, October 15, 2011
Sunday, September 11, 2011
What happens when there are no more rocks?
As I was picking up around the house yesterday before Mackinley's birthday party I found a few of his prized rocks. In the last few weeks Mac has decided that rocks are the best thing in the world to collect. We find rocks everywhere and he carries them everywhere with him. I picked up a rock from the middle of the living room floor and it hit me, what happens when there are no more rocks around our house? What would life be like if something happened to Mackinley and over time we found all of these hidden rocks around the house?
It got me thinking that if Mac were to leave us we would find several reminders of him around every corner...these rocks being one of them. Would we close up his room and fight off tears or would we sit in his room and let those tears fall over all of his treasures? The thought of losing him was too much and as I cleaned, I cried. There is no reason to believe we will lose Mackinley anytime soon, but we also thought there was no reason we would be visiting the hospital so often over the past 2 years.
Mackinley has overcome so much. He fought for 7 days in the hospital just to come home after he was born, he fought to gain and maintain a healthy weight, he worked through months of physical therapy to crawl and walk and now he is in speech therapy so that one day we can hear "mama" and "mommy" come from his sweet lips. Nothing has been easy and you can bet we would never let him leave us so easily.
As parents Tami and I have fought the urge to snatch him up and take away all of his pain and at the same time we fight every day to accept what care we must take to keep him alive. We have challenged medical staff and put our foot down at one more IV attempt, we have cried by his hospital bedside wondering if he would wake up to be the same baby he was 3 hours before and we have questioned every doctor until we are blue in the face about what to do next. We don't want to be those parents that call for splinter removal and runny noses and at the same time we HAVE to be those parents, if we don't Mackinley's life could be in danger.
Acceptance has not been easy. Everyone wants their child to be happy and healthy and of course we want that...but right now I think we just want Mackinley to be average. A normal kid. A 2 year old who says "red truck" and "dog woof" and maybe "mama up!". And every day it gets harder to accept he isn't that kid. My baby says very minimal words and maybe 1 phrase, "right there". He can't have a conversation, he can barely communicate his needs. This is not where I thought we would be. I thought we would be talking with Mackinley about what he wanted for dinner and would he rather go to the park or for a walk? Instead we do our best to guess what he wants by asking the simplest of questions and hoping for a reaction we can understand.
So as I sit 2 days from Mackinley's 2nd birthday I'm remembering all that we have gone through and hoping we are dealt better cards from here on out...and trying to accept we might not always get a better hand.
It got me thinking that if Mac were to leave us we would find several reminders of him around every corner...these rocks being one of them. Would we close up his room and fight off tears or would we sit in his room and let those tears fall over all of his treasures? The thought of losing him was too much and as I cleaned, I cried. There is no reason to believe we will lose Mackinley anytime soon, but we also thought there was no reason we would be visiting the hospital so often over the past 2 years.
Mackinley has overcome so much. He fought for 7 days in the hospital just to come home after he was born, he fought to gain and maintain a healthy weight, he worked through months of physical therapy to crawl and walk and now he is in speech therapy so that one day we can hear "mama" and "mommy" come from his sweet lips. Nothing has been easy and you can bet we would never let him leave us so easily.
As parents Tami and I have fought the urge to snatch him up and take away all of his pain and at the same time we fight every day to accept what care we must take to keep him alive. We have challenged medical staff and put our foot down at one more IV attempt, we have cried by his hospital bedside wondering if he would wake up to be the same baby he was 3 hours before and we have questioned every doctor until we are blue in the face about what to do next. We don't want to be those parents that call for splinter removal and runny noses and at the same time we HAVE to be those parents, if we don't Mackinley's life could be in danger.
Acceptance has not been easy. Everyone wants their child to be happy and healthy and of course we want that...but right now I think we just want Mackinley to be average. A normal kid. A 2 year old who says "red truck" and "dog woof" and maybe "mama up!". And every day it gets harder to accept he isn't that kid. My baby says very minimal words and maybe 1 phrase, "right there". He can't have a conversation, he can barely communicate his needs. This is not where I thought we would be. I thought we would be talking with Mackinley about what he wanted for dinner and would he rather go to the park or for a walk? Instead we do our best to guess what he wants by asking the simplest of questions and hoping for a reaction we can understand.
So as I sit 2 days from Mackinley's 2nd birthday I'm remembering all that we have gone through and hoping we are dealt better cards from here on out...and trying to accept we might not always get a better hand.
Saturday, September 3, 2011
It's very Bette...
Sand, water, swings, slides, rocks, birds and bubbles. Mackinley's summer in a nutshell. He truly has a dislike for water, other than the bath tub, and sand on the beach. We aren't sure where this beach and pool hating child came from but he'd better wise up if he expects to take any future vacations with the Ryker family. Tami and I LOVE the heat, water, sand and sun we always find on our vacations...I hate to admit I may have given birth to one of those crazies that can't wait to set sail on an Alaskan cruise. Yuck.
Mackinley decided about 2 weeks ago that rocks are the best thing in the world. His Gammy took him down to the creek by our house and threw rocks off the bridge with him for hours...now we have to stop for every rock he sees. We find rocks in his wagon, on the living room floor, in the car cup holders, constantly in his hand and among his toys. This is one of those awesome "we were so lucky to have a kid who doesn't put things in his mouth" moments. This morning after our 6th wedding anniversary brunch as we were walking back to the car Mac stopped so fast to pick up that one special rock that Tami said she was skidding in the gravel. Crazy kid.
Tami has spent her summer at work, napping, manning the bbq and requesting crock pot meatloaf. I'm pretty sure I have married the only person on God's green earth who wears long johns in the summer. She swears that her office is so cold she would die without them. I find it kind of annoying and weird but hey if she wants to sweat walking home from the bus at 5:30pm, more power to her. She has also taken up an almost obsessive habit of eating candy in bed every night...murder on my diet. Who can pass up a peanut butter cup or a few red vines while the skinny mom is scarfing them down next to you???
I have had a few moments of rediscovery this summer. I have found a new love for my collection of high heels, nail polish and sunglasses. Last summer I slacked a little and went pretty casual most of the time, this summer it's on like Donkey Kong, when I go out I dress up. This past Monday I was told not to wear an outfit because my "date" couldn't compete with sequins. Way to dampen a girls spirit! But in all reality, I wanted to wear the sequin-less outfit anyway so it all worked out for the best. Today I bought the most amazing dress suit vest at the Gap, Tami told me it's very "Bette"...for those of you who are L Word fans, you get it. Now I just need everything to fall into place and I'll have somewhere to wear it. I also did my first round of canning! My mom and I made blueberry jam that I can't wait to try. It was so easy and I can't wait to try pepper jam, salsa and pickles in the near future.
As a family we have taken up daily/nightly walks, rejoined our gym (how hard is it to walk a block to work out ladies?), decided that our love of Mexican food will never fade and are totally hooked on Netflix instant watch.
What's on the list to do this fall? Eventually I would like to get the bedroom painted and move some furniture around. Tami would love to "renovate" her collection of hoodie sweatshirts and find at least 1 more pair of comfortable shoes and Mackinley just wants to add to his collection of Thomas trains, watch Mulan 100 times and eat as many of those dang $1.50 each fruit and veggie pouches as he can get his hands on. What can I say, we are an ambitious bunch.
Mackinley decided about 2 weeks ago that rocks are the best thing in the world. His Gammy took him down to the creek by our house and threw rocks off the bridge with him for hours...now we have to stop for every rock he sees. We find rocks in his wagon, on the living room floor, in the car cup holders, constantly in his hand and among his toys. This is one of those awesome "we were so lucky to have a kid who doesn't put things in his mouth" moments. This morning after our 6th wedding anniversary brunch as we were walking back to the car Mac stopped so fast to pick up that one special rock that Tami said she was skidding in the gravel. Crazy kid.
Tami has spent her summer at work, napping, manning the bbq and requesting crock pot meatloaf. I'm pretty sure I have married the only person on God's green earth who wears long johns in the summer. She swears that her office is so cold she would die without them. I find it kind of annoying and weird but hey if she wants to sweat walking home from the bus at 5:30pm, more power to her. She has also taken up an almost obsessive habit of eating candy in bed every night...murder on my diet. Who can pass up a peanut butter cup or a few red vines while the skinny mom is scarfing them down next to you???
I have had a few moments of rediscovery this summer. I have found a new love for my collection of high heels, nail polish and sunglasses. Last summer I slacked a little and went pretty casual most of the time, this summer it's on like Donkey Kong, when I go out I dress up. This past Monday I was told not to wear an outfit because my "date" couldn't compete with sequins. Way to dampen a girls spirit! But in all reality, I wanted to wear the sequin-less outfit anyway so it all worked out for the best. Today I bought the most amazing dress suit vest at the Gap, Tami told me it's very "Bette"...for those of you who are L Word fans, you get it. Now I just need everything to fall into place and I'll have somewhere to wear it. I also did my first round of canning! My mom and I made blueberry jam that I can't wait to try. It was so easy and I can't wait to try pepper jam, salsa and pickles in the near future.
As a family we have taken up daily/nightly walks, rejoined our gym (how hard is it to walk a block to work out ladies?), decided that our love of Mexican food will never fade and are totally hooked on Netflix instant watch.
What's on the list to do this fall? Eventually I would like to get the bedroom painted and move some furniture around. Tami would love to "renovate" her collection of hoodie sweatshirts and find at least 1 more pair of comfortable shoes and Mackinley just wants to add to his collection of Thomas trains, watch Mulan 100 times and eat as many of those dang $1.50 each fruit and veggie pouches as he can get his hands on. What can I say, we are an ambitious bunch.
Monday, June 27, 2011
Things I love about having a baby in the house.
With all of the hard and crappy things our family has had to deal with some times it's hard to see the sunshine in it all. Tami took Mackinley to the grocery store tonight while I finished making our lasagna and I had a few free minutes after...what did I do? My eyes fell upon the refrigerator and I realized I LOVE having those silly letters and numbers magnets stuck to it.
While we were eating dinner I kind of put my head in my hands out of emotional exhaustion from the day, Tami looked at me and said "are you having one of those 'I wish I never had a kid days?'". I looked at her and said no, because I realize we have it tougher than most but I would never give up the magnets or the spoons all over or the millions of sippy cups.
So here is my list:
Magnets on the fridge
Baby spoons under foot
4 sippy cups all sitting on his table 1/2 full of water
Tiny socks that have lost their mate
Bubbles with no bubble wands because Mac stole them to chew on
Busy Ball Popper with a binkie blocking the air way
Ripped up kleenex all over the floor
Itty bitty flip flops for summer
Rubber balls in the garden
Books from one end of his room to the other
And best of all...kisses accompanied by the sound of "mmmmmmmm"
I had a rough day today but it's all part of life and our life is good.
While we were eating dinner I kind of put my head in my hands out of emotional exhaustion from the day, Tami looked at me and said "are you having one of those 'I wish I never had a kid days?'". I looked at her and said no, because I realize we have it tougher than most but I would never give up the magnets or the spoons all over or the millions of sippy cups.
So here is my list:
Magnets on the fridge
Baby spoons under foot
4 sippy cups all sitting on his table 1/2 full of water
Tiny socks that have lost their mate
Bubbles with no bubble wands because Mac stole them to chew on
Busy Ball Popper with a binkie blocking the air way
Ripped up kleenex all over the floor
Itty bitty flip flops for summer
Rubber balls in the garden
Books from one end of his room to the other
And best of all...kisses accompanied by the sound of "mmmmmmmm"
I had a rough day today but it's all part of life and our life is good.
Wednesday, June 15, 2011
We've been here before, but we've never gone this far.
Where have we been? What have we been doing? Sheesh, what haven't we been doing?!
On May 31st we had the scariest day of our lives. Mackinley didn't want to wake up from his 15 hour "nap", so at 11am I finally went in and got him out of bed. He seemed kind of chilly all over and it seemed odd to me because his forehead always feels a little warm to me. He was like refrigerated baby in my arms.
I got him his usual breakfast, a 6oz bottle with Carnation Instant Breakfast, and he ate it just fine and wanted more. I made another 8oz of milk and he DOWNED it...something he has never done before, especially after just eating a fortified 6oz. I set him down and he stumbled around like he was still waking up but it didn't seem right to me. He asked for a fruit pouch and sucked that down too. The part that really didn't seem right to me was that he just slumped in my lap, he didn't want down and he didn't ask me to put Mickey Mouse on the television. I laid him down to change his diaper and saw that his lips were purple and he was so stiff. He was breathing just fine but started shaking and his eyes were pleading with me, as if asking what was wrong.
After 5 seconds of contemplating what might be going on I called Tami and asked her to come home from work. I'm sure I scared the crap out of her and looking back I'm glad I did. After hanging up the phone I tested Mac's blood sugar and the number that came up seized my heart...32. Our "danger zone" number is 60, anything close to or below 60 and we high tail it to the ER. Tami calls me back and says "you need to call 911" and then continues to talk over me. I scream into the phone "his blood sugar is 32, meet me at the hospital!!!". I call 911 and the woman couldn't understand a word I said, talk about frustrating. Finally I got across that Mackinley was 20 months old and was about to go into a coma or have a seizure due to his medical condition.
The next 2 minutes lasted a LIFE TIME. I could hear sirens all over and none of them were on my street. I grabbed my keys and wallet and the diaper bag and Mac and I ran out the door. The firemen that just arrived were casually getting out of their big red truck and meandering toward our house so I managed to squeak out "please help my baby". Now I am sobbing at this point and Mackinley is just slumped on my shoulder. They took us back inside the house and started asking me a million questions...all I remember was showing them his emergency shot and asking for help. No one helped me.
Let me fill you in on this, every medical person you encounter automatically assumes someone with low blood sugar can be magically saved with some juice. I can't even tell you how wrong they are.
The aide car arrived and NO ONE HELPED ME. The aide car left and while I waited with the firemen they tried to entertain my dying baby with a ride in their firetruck and a stuffed animal. I'm not sure if they really didn't understand or if they were trying to calm me down. Finally the ambulance arrived and they loaded us up on a stretcher and we were off to Swedish. I must have pumped Mac full of enough carbs to just raise his blood sugar a few numbers and he could lift his head, a much needed sign of life for me.
Usually in these situations we have already called Mackinley's endocrinologist and he has called the ER so they are ready for a "true emergency" by the time we get there and they don't stall us for petty things like our insurance card. We didn't have time so it was going to be a crap shoot as to whether or not they would remember us, sad I know. Tami met us as we were getting out of the ambulance and she burst into tears...now we were both a sobbing mess and Mackinley was dying.
Over the next 30 minutes they took his temp (a scary 95 degrees), tried to get an IV line in (he couldn't even open his eyes let alone cry) and FINALLY pushed in his emergency dose of Cortef. In the next hour Mac's temp went up to 101 and he could open his eyes and I think he knew we were there. I had spent a good part of that hour sobbing "please don't leave us, mama is right here...open your eyes, please". It was a nightmare that didn't want to let go. When someone stabs your infant with a needle and fishes around for 5 minutes and they don't even flinch, something is wrong. One doctor ordered a chest xray, another one cancelled it...one nurse got a blood sugar of "below 25", another got 68. I'm pretty sure we were stuck in a vortex of opinions, not sciences.
We were finally admitted to the PICU and Mackinley slept for hours. He received fluids and emergency doses of cortisol and even watched a little Mickey Mouse. And just over 24 hours later it was all over, we were free to go home.
Mackinley has been so close to death more times that most people will see in a 100 year life time. He has overcome needles and incompetent nurses and catheters and surgery...and he is not even 2 years old. No one will ever understand what any of have been through, no one. It is a very lonely place to be.
I have met 2 people who have an insight into what we have gone through, and they have gone through much of their own that I will never understand, but still...they don't understand. It's not that they don't sympathize to understand or know the process of what we have gone through step by step, but until you are there you will never, ever understand what it is like to be in my shoes. I get sad wishing I had a friend who lived down the street and could say "I totally understand" and actually mean it. No one understands the panic, the stress, the monetary commitment, the feeling that you will always be dealing with this and of course the never ending love for a baby who could be gone in a moment. I dream of someone who will let me cry on their shoulder and cry with me because they get it...I always appreciate the kind words and best wishes for Mackinley - they help more than anyone will ever know.
Hug your babies and feel blessed...I know I do.
On May 31st we had the scariest day of our lives. Mackinley didn't want to wake up from his 15 hour "nap", so at 11am I finally went in and got him out of bed. He seemed kind of chilly all over and it seemed odd to me because his forehead always feels a little warm to me. He was like refrigerated baby in my arms.
I got him his usual breakfast, a 6oz bottle with Carnation Instant Breakfast, and he ate it just fine and wanted more. I made another 8oz of milk and he DOWNED it...something he has never done before, especially after just eating a fortified 6oz. I set him down and he stumbled around like he was still waking up but it didn't seem right to me. He asked for a fruit pouch and sucked that down too. The part that really didn't seem right to me was that he just slumped in my lap, he didn't want down and he didn't ask me to put Mickey Mouse on the television. I laid him down to change his diaper and saw that his lips were purple and he was so stiff. He was breathing just fine but started shaking and his eyes were pleading with me, as if asking what was wrong.
After 5 seconds of contemplating what might be going on I called Tami and asked her to come home from work. I'm sure I scared the crap out of her and looking back I'm glad I did. After hanging up the phone I tested Mac's blood sugar and the number that came up seized my heart...32. Our "danger zone" number is 60, anything close to or below 60 and we high tail it to the ER. Tami calls me back and says "you need to call 911" and then continues to talk over me. I scream into the phone "his blood sugar is 32, meet me at the hospital!!!". I call 911 and the woman couldn't understand a word I said, talk about frustrating. Finally I got across that Mackinley was 20 months old and was about to go into a coma or have a seizure due to his medical condition.
The next 2 minutes lasted a LIFE TIME. I could hear sirens all over and none of them were on my street. I grabbed my keys and wallet and the diaper bag and Mac and I ran out the door. The firemen that just arrived were casually getting out of their big red truck and meandering toward our house so I managed to squeak out "please help my baby". Now I am sobbing at this point and Mackinley is just slumped on my shoulder. They took us back inside the house and started asking me a million questions...all I remember was showing them his emergency shot and asking for help. No one helped me.
Let me fill you in on this, every medical person you encounter automatically assumes someone with low blood sugar can be magically saved with some juice. I can't even tell you how wrong they are.
The aide car arrived and NO ONE HELPED ME. The aide car left and while I waited with the firemen they tried to entertain my dying baby with a ride in their firetruck and a stuffed animal. I'm not sure if they really didn't understand or if they were trying to calm me down. Finally the ambulance arrived and they loaded us up on a stretcher and we were off to Swedish. I must have pumped Mac full of enough carbs to just raise his blood sugar a few numbers and he could lift his head, a much needed sign of life for me.
Usually in these situations we have already called Mackinley's endocrinologist and he has called the ER so they are ready for a "true emergency" by the time we get there and they don't stall us for petty things like our insurance card. We didn't have time so it was going to be a crap shoot as to whether or not they would remember us, sad I know. Tami met us as we were getting out of the ambulance and she burst into tears...now we were both a sobbing mess and Mackinley was dying.
Over the next 30 minutes they took his temp (a scary 95 degrees), tried to get an IV line in (he couldn't even open his eyes let alone cry) and FINALLY pushed in his emergency dose of Cortef. In the next hour Mac's temp went up to 101 and he could open his eyes and I think he knew we were there. I had spent a good part of that hour sobbing "please don't leave us, mama is right here...open your eyes, please". It was a nightmare that didn't want to let go. When someone stabs your infant with a needle and fishes around for 5 minutes and they don't even flinch, something is wrong. One doctor ordered a chest xray, another one cancelled it...one nurse got a blood sugar of "below 25", another got 68. I'm pretty sure we were stuck in a vortex of opinions, not sciences.
We were finally admitted to the PICU and Mackinley slept for hours. He received fluids and emergency doses of cortisol and even watched a little Mickey Mouse. And just over 24 hours later it was all over, we were free to go home.
Mackinley has been so close to death more times that most people will see in a 100 year life time. He has overcome needles and incompetent nurses and catheters and surgery...and he is not even 2 years old. No one will ever understand what any of have been through, no one. It is a very lonely place to be.
I have met 2 people who have an insight into what we have gone through, and they have gone through much of their own that I will never understand, but still...they don't understand. It's not that they don't sympathize to understand or know the process of what we have gone through step by step, but until you are there you will never, ever understand what it is like to be in my shoes. I get sad wishing I had a friend who lived down the street and could say "I totally understand" and actually mean it. No one understands the panic, the stress, the monetary commitment, the feeling that you will always be dealing with this and of course the never ending love for a baby who could be gone in a moment. I dream of someone who will let me cry on their shoulder and cry with me because they get it...I always appreciate the kind words and best wishes for Mackinley - they help more than anyone will ever know.
Hug your babies and feel blessed...I know I do.
Friday, May 27, 2011
Vacation!
We were lucky enough to travel to Kauai last week and spend 8 glorious days on the beach...well by the pool anyway. I'm not sure where Mackinley came from but he hates sand! In our family that's like hating chocolate or good Italian food, it's NOT ALLOWED.
Our flight over was a slight nightmare, we had seats across the aisle from each other so Mackinley had no where to lay down to sleep. Luckily the people on either side of us were nice and didn't mind his outbursts from exhaustion. Tami was also extremely nauseated and spent half the flight in the bathroom...so it was tons of fun for me wrestling with a baby that all the flight attendants called "HER" and "SHE". Seriously? Just because he's not practically bald like his buddies doesn't mean he's a girl!
We enjoyed long hours by the pool, a Fern Grotto cruise and lots of good food. Mackinley ate more than we have ever seen him eat, seems like he's a growing boy these days. He loved any kind of pork we threw at him, sticky rice and his all time favorite right now, tortilla chips. I think he ate half of the bag of the 3 lb Kirkland chips himself!
The flight home was heaven compared to the way over. We had a window and a middle seat and Mac napped for just over an hour soon after take off. The remainder of the 5 hour flight was spent playing with stickers and flipping through his books. I got to finish the book I had been reading by the pool and even got in a 20 minute nap. It was only fair that Tami took the brunt of baby duty this leg :)
Our flight over was a slight nightmare, we had seats across the aisle from each other so Mackinley had no where to lay down to sleep. Luckily the people on either side of us were nice and didn't mind his outbursts from exhaustion. Tami was also extremely nauseated and spent half the flight in the bathroom...so it was tons of fun for me wrestling with a baby that all the flight attendants called "HER" and "SHE". Seriously? Just because he's not practically bald like his buddies doesn't mean he's a girl!
We enjoyed long hours by the pool, a Fern Grotto cruise and lots of good food. Mackinley ate more than we have ever seen him eat, seems like he's a growing boy these days. He loved any kind of pork we threw at him, sticky rice and his all time favorite right now, tortilla chips. I think he ate half of the bag of the 3 lb Kirkland chips himself!
The flight home was heaven compared to the way over. We had a window and a middle seat and Mac napped for just over an hour soon after take off. The remainder of the 5 hour flight was spent playing with stickers and flipping through his books. I got to finish the book I had been reading by the pool and even got in a 20 minute nap. It was only fair that Tami took the brunt of baby duty this leg :)
Thursday, April 21, 2011
Lists, lists, lists...and fear.
Mackinley's words:
shoes
chair
high chair
outside
meow
all done
water
lizard
kitty
muscles
awesome
picture
binkie
mama
other
Mickey
chicken
noodle
Really kid? What about boat, truck and ball? No, he wants to get to Supercalifragilisticexpialidocious as soon as possible.
His favorite foods right now:
Carnation Instant Breakfast w/ whole milk (vanilla only!)
French fries
Pasta with nothing on it
Special K blueberry fruit crisp bars
Pickles
Snap peas
Cantelope
Strawberries
Hamburger
Lil Smokies
Hash browns
Broccoli - he will run you down for this!!!
Happy Tot fruit or veggie pouches
Chicken
Taco meat
Cucumber
Tomato
Quaker Chewy bars
Chex cereal
His least favorite foods - right now anyway:
Cheese, which he loved 3 weeks ago
Mashed potatoes
Cake
Oatmeal and baby cereal
Nutrigrain bars, which he loved 2 months ago
Juice (only when constipated does he get this lol)
Mackinley is a climbing, running, hiding, sliding, laughing and cuddling machine. His favorite toys are his books...today we read the same one at least 65 times...thanks Little Pookie. He didn't touch one toy for 3 days this past week, he just wanted to empty every drawer, cabinet and shelf in the kitchen and bathroom. Our house looks like we were looted. All I do is pick up after him and as soon as I turn my back there are 3 strainers, 6 bowls, 2 cooling racks and a shelf back on the floor.
Poor Tate, our cat, has also taken quite a "beating" lately. Mac likes to pet him like he's a dog, so obviously he's very gentle haha. Tate has been very patient and puts up with it for a while and then runs for the door and meows like his life depends on it...who knows, it may one day!
I found myself the other day actually relaxed...like we had a "normal" baby. The most frustrating part of it all? I REALIZED I was relaxed which pulled me right out of it. It can be so frustrating to think that other parents just put their kid to bed at night knowing they will be waking up in the morning. We often, and by often I mean every night, fear that Mac will have a low blood sugar episode or something worse and not wake up in the morning. We fear that a common cold will take him from us or that we could have a natural disaster and not be able to obtain his medications that sustain his life.
This natural disaster one is a new fear. How will we get his hormones that keep him alive? If we do have them, how will we keep them refridgerated in a time with a prolonged power outage??? So while you may be worrying about how you will get diapers for your kid after an earthquake I could care less if mine has to pee on maxi pads but will wonder how fast he will die from lack of hormones that your child makes naturally. So yes, in my life there is more to fear than fear itself.
As I slowly tune in to what makes me tick as a mother to a child with special medical needs it also helps me to regulate my fears and function day to day. I know our family could have it worse off and most of all I know I would never wish this upon another family. Recognizing that we have more danger to deal with doesn't make it clear as to what the danger is, it just shows you that anything can create that creeping fear you get in the pit of your stomach.
One of the moms we met last year in Chicago at the Magic Foundation conference turned our world upside down.. We were told that Mac would only need his emergency shot and a rush to the ER if he had "trauma". Trauma could be a cold or the flu or a bee sting or a broken leg...pretty much anything! She told us that many times her son would just be watching tv and she would notice that he was so completely zoned out because his body had basically created a trauma and caused his blood sugar to drop. She tries to snap him out of it, he's not just zoned or focused on his tv show, he is about to possibly have a seizure or go into a coma. Plunging that needle into his leg is the only way to save him. So now I know, we have to constantly be aware of Mackinley's actions and reactions, these are signs of possible low blood sugar. So please don't tell me that things are "okay", just because he is not bleeding or screaming or passed out doesn't mean I can relax and sleep peacefully.
shoes
chair
high chair
outside
meow
all done
water
lizard
kitty
muscles
awesome
picture
binkie
mama
other
Mickey
chicken
noodle
Really kid? What about boat, truck and ball? No, he wants to get to Supercalifragilisticexpialidocious as soon as possible.
His favorite foods right now:
Carnation Instant Breakfast w/ whole milk (vanilla only!)
French fries
Pasta with nothing on it
Special K blueberry fruit crisp bars
Pickles
Snap peas
Cantelope
Strawberries
Hamburger
Lil Smokies
Hash browns
Broccoli - he will run you down for this!!!
Happy Tot fruit or veggie pouches
Chicken
Taco meat
Cucumber
Tomato
Quaker Chewy bars
Chex cereal
His least favorite foods - right now anyway:
Cheese, which he loved 3 weeks ago
Mashed potatoes
Cake
Oatmeal and baby cereal
Nutrigrain bars, which he loved 2 months ago
Juice (only when constipated does he get this lol)
Mackinley is a climbing, running, hiding, sliding, laughing and cuddling machine. His favorite toys are his books...today we read the same one at least 65 times...thanks Little Pookie. He didn't touch one toy for 3 days this past week, he just wanted to empty every drawer, cabinet and shelf in the kitchen and bathroom. Our house looks like we were looted. All I do is pick up after him and as soon as I turn my back there are 3 strainers, 6 bowls, 2 cooling racks and a shelf back on the floor.
Poor Tate, our cat, has also taken quite a "beating" lately. Mac likes to pet him like he's a dog, so obviously he's very gentle haha. Tate has been very patient and puts up with it for a while and then runs for the door and meows like his life depends on it...who knows, it may one day!
I found myself the other day actually relaxed...like we had a "normal" baby. The most frustrating part of it all? I REALIZED I was relaxed which pulled me right out of it. It can be so frustrating to think that other parents just put their kid to bed at night knowing they will be waking up in the morning. We often, and by often I mean every night, fear that Mac will have a low blood sugar episode or something worse and not wake up in the morning. We fear that a common cold will take him from us or that we could have a natural disaster and not be able to obtain his medications that sustain his life.
This natural disaster one is a new fear. How will we get his hormones that keep him alive? If we do have them, how will we keep them refridgerated in a time with a prolonged power outage??? So while you may be worrying about how you will get diapers for your kid after an earthquake I could care less if mine has to pee on maxi pads but will wonder how fast he will die from lack of hormones that your child makes naturally. So yes, in my life there is more to fear than fear itself.
As I slowly tune in to what makes me tick as a mother to a child with special medical needs it also helps me to regulate my fears and function day to day. I know our family could have it worse off and most of all I know I would never wish this upon another family. Recognizing that we have more danger to deal with doesn't make it clear as to what the danger is, it just shows you that anything can create that creeping fear you get in the pit of your stomach.
One of the moms we met last year in Chicago at the Magic Foundation conference turned our world upside down.. We were told that Mac would only need his emergency shot and a rush to the ER if he had "trauma". Trauma could be a cold or the flu or a bee sting or a broken leg...pretty much anything! She told us that many times her son would just be watching tv and she would notice that he was so completely zoned out because his body had basically created a trauma and caused his blood sugar to drop. She tries to snap him out of it, he's not just zoned or focused on his tv show, he is about to possibly have a seizure or go into a coma. Plunging that needle into his leg is the only way to save him. So now I know, we have to constantly be aware of Mackinley's actions and reactions, these are signs of possible low blood sugar. So please don't tell me that things are "okay", just because he is not bleeding or screaming or passed out doesn't mean I can relax and sleep peacefully.
Monday, March 7, 2011
Dear Mr. Endocrynologist,
I understand my son has gained 3 lbs in 3 months but HE IS NOT EATING FOR 12 HOURS...all day long.
Thanks,
Concerned mom #1783
Seriously, one of our main concerns is Mackinley's blood sugar dropping. We have always been told by the above mentioned doctor that we need to test his blood sugar if he isn't eating for long periods of time. For the last week Mackinley has eaten a handful of corn Chex all day...along with maybe 14 oz of milk/formula. He eats a decent dinner most nights but that is only after a lengthy hit or miss session of "what will he eat tonight?". Pure frustration.
His endo tells us today that he has probably outgrown the risk of low blood sugars...unless he is vomitting. So does that mean we worry less? Not so much.
On the up-side, Mac has responded to his growth hormone therapy AMAZINGLY! He has gone from being in the 6th percentile at 9 months to the 90th percentile at 18 months. Modern medicine I tell ya, it's a blessing.
We have done some reading and have found that the buffer in his growth hormone shot may sting so we are calling our insurance co. tomorrow to see if we have other options. Our nurse today told us that other patients have claimed the same reaction but the drug company denies it of course...insurance companies are paying out their rears for their patients to use their drug. Why ruin a good run? Tami is going to check out our options tomorrow and we may be switching to a different drug company which means a different injection method, hopefully still a pen.
We have several playdates scheduled this week, I hope, and I can't wait to get out of the house after being sick last week. Mackinley doesn't know it but I'm sure he could use some toddler social interaction so I know he will be excited to see Ava and Vaughn, Miles and Graham and Tallulah. I have been terrible at taking pictures the last month so I'm hoping to get some good shots this week...now if I could only find the camera charger.
Thanks,
Concerned mom #1783
Seriously, one of our main concerns is Mackinley's blood sugar dropping. We have always been told by the above mentioned doctor that we need to test his blood sugar if he isn't eating for long periods of time. For the last week Mackinley has eaten a handful of corn Chex all day...along with maybe 14 oz of milk/formula. He eats a decent dinner most nights but that is only after a lengthy hit or miss session of "what will he eat tonight?". Pure frustration.
His endo tells us today that he has probably outgrown the risk of low blood sugars...unless he is vomitting. So does that mean we worry less? Not so much.
On the up-side, Mac has responded to his growth hormone therapy AMAZINGLY! He has gone from being in the 6th percentile at 9 months to the 90th percentile at 18 months. Modern medicine I tell ya, it's a blessing.
We have done some reading and have found that the buffer in his growth hormone shot may sting so we are calling our insurance co. tomorrow to see if we have other options. Our nurse today told us that other patients have claimed the same reaction but the drug company denies it of course...insurance companies are paying out their rears for their patients to use their drug. Why ruin a good run? Tami is going to check out our options tomorrow and we may be switching to a different drug company which means a different injection method, hopefully still a pen.
We have several playdates scheduled this week, I hope, and I can't wait to get out of the house after being sick last week. Mackinley doesn't know it but I'm sure he could use some toddler social interaction so I know he will be excited to see Ava and Vaughn, Miles and Graham and Tallulah. I have been terrible at taking pictures the last month so I'm hoping to get some good shots this week...now if I could only find the camera charger.
Wednesday, March 2, 2011
Brownout...tired of the energy suck.
Okay, so lately I have found myself putting way too much energy into people who either don't have the time or the respect for me. The only solution I could come up with to keep myself sane is a "brownout". I will not be deleting anyone from my life...I simply have a plan.
Please don't be offended if I don't reach out to you. If you show me the respect of appreciating me in your life, you will get the same in return. I won't be sending texts or emails to people who do not respond. Want to talk? Send me something in any form of communication - call, text, even write a letter and put a damn stamp on it and surely you can expect a response from me. I no longer find joy in the anticipation of responses that do not come.
I feel a bit like I'm taking part in "Skipping Christmas" ("Christmas With the Kranks") and some people may find it selfish but I've explained myself and it is what it is. I have my own life - my child, my family and myself come first - something that I haven't put 110% into lately. I should be showing more respect for myself and I owe it to myself to not be taken advantage of emotionally.
So there it is...
Please don't be offended if I don't reach out to you. If you show me the respect of appreciating me in your life, you will get the same in return. I won't be sending texts or emails to people who do not respond. Want to talk? Send me something in any form of communication - call, text, even write a letter and put a damn stamp on it and surely you can expect a response from me. I no longer find joy in the anticipation of responses that do not come.
I feel a bit like I'm taking part in "Skipping Christmas" ("Christmas With the Kranks") and some people may find it selfish but I've explained myself and it is what it is. I have my own life - my child, my family and myself come first - something that I haven't put 110% into lately. I should be showing more respect for myself and I owe it to myself to not be taken advantage of emotionally.
So there it is...
Monday, February 28, 2011
Wheeling, dealing and napping!
I've written before about getting some good deals and getting better at it. Well this past weekend I managed to get all this for around $6, most of which was sales tax - gotta love almost 10% tax in Seattle (boo).
I'm lucky that Tami likes to get out of the house with Mackinley and I on weekends so he can grab eye shadow and nail polish off shelves...I mean run around the aisles at Rite Aid! Now our Sunday morning routine is to hit up the Dollar Tree for another cheap copy of the paper and then off to get some deals at Rite Aid, Target and Safeway. We usually wait until Friday after work to go to Albertson's unless their are doubles coupons that expire before then. Our reasoning? The "good" Albertson's is about 20 minutes north of us and our favorite cashier works Friday nights.
Mackinley has been such a trooper the past week while I was sick. We didn't leave the house for almost 6 whole days and the poor kid had to play with me while I sat in a chair or on the couch for a few days. He must have known I was having a hard time because he took a nap everyday between 11:30 and noon for at least 2 hours. Today...today was a different story. He didn't nap until 3pm and he was just stirring, I hope he stays down for another hour or tonight will be no fun for anyone!
I thought we were on our way to some words but it seems like we are going backwards. Mackinley hasn't said chair or toys or signed "more" for like a week. I hope he just feels like he has mastered those skills and is moving on to the next, I read some kids like to do that. We have our next pedi appointment at the end of March...they wrote it down as today but they meant next month. Glad we called this morning to confirm, I would have been really irked if I had to drive downtown (with the freeway backed up due to a truck on fire) and paid for parking at the medical tower to just drive back home. I was really looking forward to talking with his pedi about his speech and finding out how much Mac has grown, his jeans are all the right length now so I'm sure he has grown over an inch since his 15 month appointment.
I'm lucky that Tami likes to get out of the house with Mackinley and I on weekends so he can grab eye shadow and nail polish off shelves...I mean run around the aisles at Rite Aid! Now our Sunday morning routine is to hit up the Dollar Tree for another cheap copy of the paper and then off to get some deals at Rite Aid, Target and Safeway. We usually wait until Friday after work to go to Albertson's unless their are doubles coupons that expire before then. Our reasoning? The "good" Albertson's is about 20 minutes north of us and our favorite cashier works Friday nights.
Mackinley has been such a trooper the past week while I was sick. We didn't leave the house for almost 6 whole days and the poor kid had to play with me while I sat in a chair or on the couch for a few days. He must have known I was having a hard time because he took a nap everyday between 11:30 and noon for at least 2 hours. Today...today was a different story. He didn't nap until 3pm and he was just stirring, I hope he stays down for another hour or tonight will be no fun for anyone!
I thought we were on our way to some words but it seems like we are going backwards. Mackinley hasn't said chair or toys or signed "more" for like a week. I hope he just feels like he has mastered those skills and is moving on to the next, I read some kids like to do that. We have our next pedi appointment at the end of March...they wrote it down as today but they meant next month. Glad we called this morning to confirm, I would have been really irked if I had to drive downtown (with the freeway backed up due to a truck on fire) and paid for parking at the medical tower to just drive back home. I was really looking forward to talking with his pedi about his speech and finding out how much Mac has grown, his jeans are all the right length now so I'm sure he has grown over an inch since his 15 month appointment.
Sunday, February 20, 2011
What's been going on?
I received a request for an update (thanks for a kick in the butt Allie :)) so here goes!
Mackinley has been busy "talking" all day long, not a whole lot of words but he's getting there. In addition to shoes, chair, down and go, we now have kitty cat, monster and I think we have car. He is not very reliable at speaking his words and still needs some prompting but I'm not too worried since he is rarely quiet. We have an appointment with his pedi at the end of the month so we will see then how much we need to work.
Mac also graduated from PT! After 8 short weeks he achieved all of his physical goals and Mali was happy to see him go, not really, she seemed kinda sad. We really like Mali and hope if we have to go back for any reason we can work with her. We go back in May for a check-up with her to make sure he is still on track, other than that he is free to grow as he pleases.
We have been working on cutting back and saving money. We changed cable providers and lost a lot of Kelsey's favorite channels but after a few internal tears she realizes we made the right choice. We also changed internet providers and saved money will getting higher speed internet! This works wonderfully since we are using Netflix instant watch so often it is a pain when the show is constantly rebuffering. Today we hit up Rite-Aid for some great deals, we walked away with 5 packs of Huggies, 2 giant bags of Halls cough drops, 4 king size candy bars (for Tami), 2 regular candy bars all for $20 out of pocket, AND we got $14 back to spend on our next purchase...so we REALLY SPENT $6! Gotta love Rite Aid + coupons!
In preparation for our summer we purchased our plane tickets for Hawaii, not a super deal, but we feel lucky to be able to go at all. We are pretty excited to take Mac to a warm beach where he can run through the sand! Last summer we hit up Alki, just minutes from our house, but the sand was too hot for him to crawl in and the water is cold :( We have decided to skip Chicago this year and save up for next year. There are some very special reasons we want to go and this year just isn't in the cards, we just can't wait for next year.
Kelsey has been dying to paint the interior of the house but Tami hates to paint and now with the baby it's almost impossible. Almost. Today we bought paint for the master bedroom and paint for the master bathroom and Mac's bathroom. Kelsey figures if she can clean up the walls during Mac's daily nap then if Tami will keep him busy at night she can get it painted. We chose Behr's Azul Tequila for the bedroom and Behr's Celery Sticks for the bathrooms...we feel limited with the limestone floors in the bathrooms since they do have a green hue, green is not our first choice. We also bought coat racks for the master bedroom and the entryway because our coats and sweatshirts are taking over! Between the three of us I think we probably own 30 jackets and coats. Why? Because we like to be fashionable, duh.
The whole family has been having lots of fun playing at toddler open gym, the park and with all of Mackinley's toys, we really can't wait for warmer weather. Mackinley would really like a Cozy Coupe and a climbing play structure with a slide...we'll see what Gammy and the Easter Bunny can cook up. Speaking of Easter, we have a kitchen island that has a boring white back side and we have been trying to figure out what to do about it for 4 years now. We decided that we are going to paint it with chalkboard paint and possibly a section with magnetic paint so that Mac has a giant easel to play on! Gammy thought it was a great idea and that Mac may get some paint in his Easter basket.
With high hopes for warm weather here is a picture of Mackinley's first outing to the beach at about 2 weeks old!
Mackinley has been busy "talking" all day long, not a whole lot of words but he's getting there. In addition to shoes, chair, down and go, we now have kitty cat, monster and I think we have car. He is not very reliable at speaking his words and still needs some prompting but I'm not too worried since he is rarely quiet. We have an appointment with his pedi at the end of the month so we will see then how much we need to work.
Mac also graduated from PT! After 8 short weeks he achieved all of his physical goals and Mali was happy to see him go, not really, she seemed kinda sad. We really like Mali and hope if we have to go back for any reason we can work with her. We go back in May for a check-up with her to make sure he is still on track, other than that he is free to grow as he pleases.
We have been working on cutting back and saving money. We changed cable providers and lost a lot of Kelsey's favorite channels but after a few internal tears she realizes we made the right choice. We also changed internet providers and saved money will getting higher speed internet! This works wonderfully since we are using Netflix instant watch so often it is a pain when the show is constantly rebuffering. Today we hit up Rite-Aid for some great deals, we walked away with 5 packs of Huggies, 2 giant bags of Halls cough drops, 4 king size candy bars (for Tami), 2 regular candy bars all for $20 out of pocket, AND we got $14 back to spend on our next purchase...so we REALLY SPENT $6! Gotta love Rite Aid + coupons!
In preparation for our summer we purchased our plane tickets for Hawaii, not a super deal, but we feel lucky to be able to go at all. We are pretty excited to take Mac to a warm beach where he can run through the sand! Last summer we hit up Alki, just minutes from our house, but the sand was too hot for him to crawl in and the water is cold :( We have decided to skip Chicago this year and save up for next year. There are some very special reasons we want to go and this year just isn't in the cards, we just can't wait for next year.
Kelsey has been dying to paint the interior of the house but Tami hates to paint and now with the baby it's almost impossible. Almost. Today we bought paint for the master bedroom and paint for the master bathroom and Mac's bathroom. Kelsey figures if she can clean up the walls during Mac's daily nap then if Tami will keep him busy at night she can get it painted. We chose Behr's Azul Tequila for the bedroom and Behr's Celery Sticks for the bathrooms...we feel limited with the limestone floors in the bathrooms since they do have a green hue, green is not our first choice. We also bought coat racks for the master bedroom and the entryway because our coats and sweatshirts are taking over! Between the three of us I think we probably own 30 jackets and coats. Why? Because we like to be fashionable, duh.
The whole family has been having lots of fun playing at toddler open gym, the park and with all of Mackinley's toys, we really can't wait for warmer weather. Mackinley would really like a Cozy Coupe and a climbing play structure with a slide...we'll see what Gammy and the Easter Bunny can cook up. Speaking of Easter, we have a kitchen island that has a boring white back side and we have been trying to figure out what to do about it for 4 years now. We decided that we are going to paint it with chalkboard paint and possibly a section with magnetic paint so that Mac has a giant easel to play on! Gammy thought it was a great idea and that Mac may get some paint in his Easter basket.
With high hopes for warm weather here is a picture of Mackinley's first outing to the beach at about 2 weeks old!
Thursday, January 27, 2011
Days without incident...
Now I give this in approximate days and with the hope that I don't jinx Mackinley, but it has been 261 days (give or take a few) since we have had to be admitted for illness into the hospital! We were there last November after surgery but they concluded that it was just a reaction to the anesthesia.
Mackinley has been truckin' along with his words! He now says shoes, chair and toys. He also makes the same sound, not quite a word, when you hand him something and it sounds like "thank you". If he wants a bottle he goes to the fridge and when he wants snacks he gets them out of the cupboard. He loves to do sommersaults at Little Gym and he has impressed his physical therapist every week since we started therapy.
As a family we are working on booking our flights and hotel for his medical conference in July and we are hoping to take our trip to Kauai in May. We have been doing some major saving buy doing some super couponing. Yesterday I got 8 lightbulbs for free and some make-up for over 60% off. I have put together a coupon binder, my envelopes just got too full, and it is packed of useful coupons just waiting for sales! The coupons I won't use I send to my coupon buddy in Alabama :)
We have also been eating out of the pantry and freezer A LOT. We only ate out once last week, that is down from at least 2 lunches and 2-3 dinners out in previous weeks! I have been relatively creative and some of our favorite meals were BLT pizza (just like CPK!), crock pot pork and potatoes and turkey meatloaf muffins. I have lost almost 8 lbs in the last 2 weeks and hopefully Tami and Mac can gain a few.
Sometimes I get the urge to run through Starbucks for an Americano or Taco Time for a salad and then I remember I have those things at home and can save money if I can just hold out until I get there. It makes me feel good about saving a few bucks so we can use them for more important things.
Mackinley has been truckin' along with his words! He now says shoes, chair and toys. He also makes the same sound, not quite a word, when you hand him something and it sounds like "thank you". If he wants a bottle he goes to the fridge and when he wants snacks he gets them out of the cupboard. He loves to do sommersaults at Little Gym and he has impressed his physical therapist every week since we started therapy.
As a family we are working on booking our flights and hotel for his medical conference in July and we are hoping to take our trip to Kauai in May. We have been doing some major saving buy doing some super couponing. Yesterday I got 8 lightbulbs for free and some make-up for over 60% off. I have put together a coupon binder, my envelopes just got too full, and it is packed of useful coupons just waiting for sales! The coupons I won't use I send to my coupon buddy in Alabama :)
We have also been eating out of the pantry and freezer A LOT. We only ate out once last week, that is down from at least 2 lunches and 2-3 dinners out in previous weeks! I have been relatively creative and some of our favorite meals were BLT pizza (just like CPK!), crock pot pork and potatoes and turkey meatloaf muffins. I have lost almost 8 lbs in the last 2 weeks and hopefully Tami and Mac can gain a few.
Sometimes I get the urge to run through Starbucks for an Americano or Taco Time for a salad and then I remember I have those things at home and can save money if I can just hold out until I get there. It makes me feel good about saving a few bucks so we can use them for more important things.
Thursday, January 6, 2011
So, how much?
I was doing a little light reading today on Mac's condition and found this, a formula to figure out how much of his hormones he should receive depending on the situation. It changes from daily, to "stress dose" which also has 2 categories of "illness" or "trauma". I'm not sure who manages to use these formulas and not go cross-eyed but I thought it would give a little insight into how tough it can be to regulate Mackinley's hormones.
Hydrocortisone:
Replacement doses if needed: 8–15 mg/m2/day PO, divided q8h (or t.i.d.)
In stress circumstances such as fever or illness, dose increased to 25–100 mg/m2/day PO
For surgery, major illness, vomiting: Loading dose of 50–100 mg/m2 IM or IV followed by 50–100 mg/m2 divided q4h; oral stress doses should be divided q8h.
To calculate hydrocortisone dose, estimate body surface area (BSA) using a nomogram or the following formula: BSA (m2) = square root of (height [cm] × weight [kg]/3600)
It made me laugh a little to think about his specialists calculating this.
Hydrocortisone:
Replacement doses if needed: 8–15 mg/m2/day PO, divided q8h (or t.i.d.)
In stress circumstances such as fever or illness, dose increased to 25–100 mg/m2/day PO
For surgery, major illness, vomiting: Loading dose of 50–100 mg/m2 IM or IV followed by 50–100 mg/m2 divided q4h; oral stress doses should be divided q8h.
To calculate hydrocortisone dose, estimate body surface area (BSA) using a nomogram or the following formula: BSA (m2) = square root of (height [cm] × weight [kg]/3600)
It made me laugh a little to think about his specialists calculating this.
Wednesday, January 5, 2011
Things that make me angry...mostly this week.
I'm hoping that by putting these thoughts out there my insomnia will let me rest...here's to thinking positive! Some days life seems so unfair and there is nothing we can do about it, I wish I was one of those people who takes life by the horns and changes their destiny. Unfortunately I'm just not the top dog when it comes to making everything fall into place and there are things that make me feel out of control.
Everyday I watch my baby grow and I feel so good about everything he has overcome and then I see what he has yet to accomplish. Mackinley is making great strides in PT and has improved immensely in the last 2 weeks. I think our therapist was not prepared for him to be doing so well...today's therapy seemed slow like she didn't prepare for the next step. That was a great feeling!
So after a great PT appointment I come home and read about how other kids his age are saying anywhere from 10-70 words and even short phrases and Mac says maybe 1 word. I know we are behind but it hit me so hard tonight and the pit in my stomach is making tears in my eyes. Mackinley is very verbal, he jabbers all day long and comprehends everything that is said to him. He follows commands and responds in his own version of "yes" and "no" to questions. His pediatrician gave us a handout at his 15 month appointment, I know it is what he hands out to everyone in a situation like ours but it was kind of offensive. It is titled something like "Verbal Advancement for Busy Parents"...like we are too busy to talk with our child??? Every time I look at the hand out it makes me feel like a failure. I'm home with Mac all day and how dare I be "too busy" to help him grow?! I know that's not what it is meant to say but dang it!
I'm not sure what we may be doing wrong or when Mackinley will start to catch up but I'm sure this means another therapist to add to our list. We have until February 28 to get Mac to say 4-5 words regularly, it's very daunting.
Other things that make me angry...having to read a blog about a 4 month old baby who is having a brain tumor removed today. I know I don't have to read the blog, that is beside the point, but I feel like I have to follow this story since I got sucked in weeks ago. Little Scarlett came out of surgery today with 70-80% of the tumor removed and her limbs were responding wonderfully as she came out of anesthesia. Small miracles.
I'm asking for a rather large miracle...for a dear friend...and it's frustrating not knowing if my prayers are being answered. Sometimes I wonder if my miracle is selfish and sometimes I wonder if there is a bigger plan that we are all failing to see. Most of all I hate that there is nothing I can do except wait and see what happens to someone I love. Why doesn't God respond via email or text? Things would be so much more clear but not as majestic I suppose.
Minor things that have made my week less pleasurable: cold coffee, pms, dark roots that need to be touched up, cold leather car seats, a noisy drip next door at 8am, laundry that gets forgotten in the washing machine, a melted Christmas gift, money, money, money, cold feet and shots for Mac.
I am now crossing my fingers that putting this down on "paper" will clear my mind for the night and I will be able to fall asleep before 4am.
Everyday I watch my baby grow and I feel so good about everything he has overcome and then I see what he has yet to accomplish. Mackinley is making great strides in PT and has improved immensely in the last 2 weeks. I think our therapist was not prepared for him to be doing so well...today's therapy seemed slow like she didn't prepare for the next step. That was a great feeling!
So after a great PT appointment I come home and read about how other kids his age are saying anywhere from 10-70 words and even short phrases and Mac says maybe 1 word. I know we are behind but it hit me so hard tonight and the pit in my stomach is making tears in my eyes. Mackinley is very verbal, he jabbers all day long and comprehends everything that is said to him. He follows commands and responds in his own version of "yes" and "no" to questions. His pediatrician gave us a handout at his 15 month appointment, I know it is what he hands out to everyone in a situation like ours but it was kind of offensive. It is titled something like "Verbal Advancement for Busy Parents"...like we are too busy to talk with our child??? Every time I look at the hand out it makes me feel like a failure. I'm home with Mac all day and how dare I be "too busy" to help him grow?! I know that's not what it is meant to say but dang it!
I'm not sure what we may be doing wrong or when Mackinley will start to catch up but I'm sure this means another therapist to add to our list. We have until February 28 to get Mac to say 4-5 words regularly, it's very daunting.
Other things that make me angry...having to read a blog about a 4 month old baby who is having a brain tumor removed today. I know I don't have to read the blog, that is beside the point, but I feel like I have to follow this story since I got sucked in weeks ago. Little Scarlett came out of surgery today with 70-80% of the tumor removed and her limbs were responding wonderfully as she came out of anesthesia. Small miracles.
I'm asking for a rather large miracle...for a dear friend...and it's frustrating not knowing if my prayers are being answered. Sometimes I wonder if my miracle is selfish and sometimes I wonder if there is a bigger plan that we are all failing to see. Most of all I hate that there is nothing I can do except wait and see what happens to someone I love. Why doesn't God respond via email or text? Things would be so much more clear but not as majestic I suppose.
Minor things that have made my week less pleasurable: cold coffee, pms, dark roots that need to be touched up, cold leather car seats, a noisy drip next door at 8am, laundry that gets forgotten in the washing machine, a melted Christmas gift, money, money, money, cold feet and shots for Mac.
I am now crossing my fingers that putting this down on "paper" will clear my mind for the night and I will be able to fall asleep before 4am.
Sunday, January 2, 2011
New Year...Resolutions vs. Bucket List
To put things simply I've learned more this year than ever before...five years of college have had nothing on 2010.
A few choice brain fillers: in an age when we are fighting obesity left and right my child needs to eat butter, olive oil, bacon and ice cream to keep an acceptable weight. Mackinley has fought to stay on the growth charts for both height and weight and we have tried so many different things to keep him gaining pounds, even ounces sometimes, that I can't even begin to tell you what works.
Friends are not always who they seem...it's worth it to lose a few in order to not lose yourself. If a friend says "you are second best" to their dog, toss them. If a friend asks you to stand up for them in their wedding and then says they chose a "friend" who left them in the street injured, toss them. Bottom line, keep the friends who deserve to be in your life not those who think you feel lucky to be in theirs.
Facebook eats your brain. Period.
Never lose touch with someone who is important to you, they could teach you life lessons that inspire the most random things. For example, pearl onions are amazing and just enough bling is hott.
A good friend is not someone who has been in your life the longest...it's about what they contribute. I have met a wonderful woman, mother and friend this year and we have only spoken through our keyboards. Allie, you drag me out of holes, help me realize even a grain of food is a milestone and that it can only get better from here...right? I never thought I would feel so alone in motherhood but when God chose us to be Mackinley's parents he gave us an extra special child. No matter how many times someone tells you that you were "chosen" to be the parent of your child sometimes it's still impossible to understand why. I think that Allie and I have worked through a lot of hidden "whys" this year and I know I would probably have given up had I not had her as my partner in pahypopit. Thank you from the bottom of my heart.
And most importantly, never take anything for granted it could be gone in an instant. We never took Mackinley for granted but seeing him hospitalized for something as simple as a stomach bug makes you see how fragile life can be. Seeing your child hooked up to machines with IVs in him and waking every hour to make sure he is okay and comfortable is no way to spend year one. It is a reality though and one we will be a part of for the rest of his life. You may not be able to see it in the picture but this little boy has been through more in 15 months than most kids go through in their entire life.
I haven't decided if I should come up with a resolution or actually write down the things I keep saying I want to do before I bite the bullet. I guess I should do both and see how far I get with either option.
I think my resolution for 2011 will be to take care of myself...not better care but care...because I have really let myself go. I have not been ideal in my eating and have even lost touch with many of my passions. Why haven't I come to terms with not dancing anymore and taken a Zumba class to fill the void???
Bucket List:
1. Update my blog, someday it will seem much more important than today.
2. Learn to ballroom dance.
3. Travel to Italy.
4. Learn to knit a hat.
5. Bake bran muffins from scratch (simple right? I think I can get to this one).
6. Get rid of my obsession with hanging up clothes to avoid POSSIBLE shrinkage.
7. Enjoy jogging.
8. Create and give birth to baby #2.
9. Train in boxing.
10. Paint my house (inside).
11. Keep at least 1 plant alive for an expected plant lifetime.
I think 11 is good to start with since it is 2011. I sure hope a few of them are checked off before I go to add more in 2012.
A few choice brain fillers: in an age when we are fighting obesity left and right my child needs to eat butter, olive oil, bacon and ice cream to keep an acceptable weight. Mackinley has fought to stay on the growth charts for both height and weight and we have tried so many different things to keep him gaining pounds, even ounces sometimes, that I can't even begin to tell you what works.
Friends are not always who they seem...it's worth it to lose a few in order to not lose yourself. If a friend says "you are second best" to their dog, toss them. If a friend asks you to stand up for them in their wedding and then says they chose a "friend" who left them in the street injured, toss them. Bottom line, keep the friends who deserve to be in your life not those who think you feel lucky to be in theirs.
Facebook eats your brain. Period.
Never lose touch with someone who is important to you, they could teach you life lessons that inspire the most random things. For example, pearl onions are amazing and just enough bling is hott.
A good friend is not someone who has been in your life the longest...it's about what they contribute. I have met a wonderful woman, mother and friend this year and we have only spoken through our keyboards. Allie, you drag me out of holes, help me realize even a grain of food is a milestone and that it can only get better from here...right? I never thought I would feel so alone in motherhood but when God chose us to be Mackinley's parents he gave us an extra special child. No matter how many times someone tells you that you were "chosen" to be the parent of your child sometimes it's still impossible to understand why. I think that Allie and I have worked through a lot of hidden "whys" this year and I know I would probably have given up had I not had her as my partner in pahypopit. Thank you from the bottom of my heart.
And most importantly, never take anything for granted it could be gone in an instant. We never took Mackinley for granted but seeing him hospitalized for something as simple as a stomach bug makes you see how fragile life can be. Seeing your child hooked up to machines with IVs in him and waking every hour to make sure he is okay and comfortable is no way to spend year one. It is a reality though and one we will be a part of for the rest of his life. You may not be able to see it in the picture but this little boy has been through more in 15 months than most kids go through in their entire life.
I haven't decided if I should come up with a resolution or actually write down the things I keep saying I want to do before I bite the bullet. I guess I should do both and see how far I get with either option.
I think my resolution for 2011 will be to take care of myself...not better care but care...because I have really let myself go. I have not been ideal in my eating and have even lost touch with many of my passions. Why haven't I come to terms with not dancing anymore and taken a Zumba class to fill the void???
Bucket List:
1. Update my blog, someday it will seem much more important than today.
2. Learn to ballroom dance.
3. Travel to Italy.
4. Learn to knit a hat.
5. Bake bran muffins from scratch (simple right? I think I can get to this one).
6. Get rid of my obsession with hanging up clothes to avoid POSSIBLE shrinkage.
7. Enjoy jogging.
8. Create and give birth to baby #2.
9. Train in boxing.
10. Paint my house (inside).
11. Keep at least 1 plant alive for an expected plant lifetime.
I think 11 is good to start with since it is 2011. I sure hope a few of them are checked off before I go to add more in 2012.
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