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.
Monday, March 7, 2011
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.
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