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.
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