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.
Thursday, January 27, 2011
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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