Wednesday, June 30, 2010

Formal Complaint

Today has been a really great day and yet a super frustrating day. It all started on Monday afternoon, when a Keene Medical employee (this is who provides Addison's oxygen and stuff) named Tammy called me. She said that she needed to come check the oximeter to make sure it was still functioning OK. With many people dropping by my house every week (therapists, nurse, nutritionalist) and with many doctor's appointments out each week, I sweetly (I thought) said that that was fine, but since we have so many people come by each week and so many appointments out, I just ask that she come while someone else is already coming. Otherwise every day is taken up with medical stuff and leaves us with no time to be a family. (Remember that this was Monday that she called) She replied that it was due by Wednesday so she needed to come by then. I replied, OK, Tuesday would really be best for us since we already have someone else dropping by for an appointment. Tuesday won't work for her, she said. Only Wednesday. Wednesday at 1:00. I felt extremely bullied and knew that an entire day was now ruined for us, but meekly agreed. Note: we already have other appointments for three of the other days this week. However, when my best friend (who is in town for only a few short weeks) at the last minute had only this day to spend with me, I called back in to Keene Medical and said that we would have to reschedule (I would have made our plans around this appointment if it had been made further in advance, but since I had felt so bullied in making it in the first place, I felt like it was OK to cancel). I left a message because Tammy wasn't available. When she called back, she was very unhappy. This is how the conversation went down:

Me: I am very sorry, but today won't work for us because something has come up. I would be glad to reschedule (and I gave her four other days that would work)
Tammy: But it is due today. You need to have it checked today.
Me: We have a lot of appointments. I usually schedule them at least two weeks out. If it was due by the end of the month, why did you wait until there was only two days of the month left to call me?
Tammy: I didn't get around to calling you until Monday and you agreed to the appointment today.
Me: Honestly, I felt really bullied into making that appointment. Furthermore, (I finally stuck up for myself-I am bad at this), I really do need you to schedule with one of the other therapists dropping by because we can't let our lives be controlled by having someone come by every day. Or, if it simply won't work to line up your visit, I ask that it be later or earlier in the day. If it is at 1:00, that cuts up the day and means that we really can't do anything else.
Tammy: Earlier or later don't work for me I have other plans.
Me: Even just one hour earlier at 12:00 would be better
Tammy: That doesn't work for me. I eat lunch at 12. I am going to have to report you since you are making the oximeter unavailable to us to check.
Me: I am not making it unavailable. I am just asking for some more advance planning and some consideration for our schedule.
Tammy: It is due today. I am reporting you since you are not cooperating with what I need to do.
Me: It is not my fault that you called me with such short notice. You have to understand that we have so many appointments for Addison that we really do need more time to make things work.
Tammy: We have to check the oximeter every month. I am reporting you to our agency so that they know that I tried to check this but you refused to let me.

and so on and so forth. I hung up and I was shaking I was so upset. I immediately called Keene Medical back and asked to file a formal complaint and also ask that someone else come check the oximeter. They are making over $1,000 a month on us between the oxygen and everything that we need for Addison. Is it really too much to ask that they are considerate of everything else that we have going on? I am the customer, right? I am paying them the money, right? Why was I made to feel like the scum of the earth on the phone to this lady because I wasn't lining up with what was convenient to her???

Anyway, my friend then showed up and we all headed down to the hospital because I needed to pick up Addison's Sildenafil from the hospital pharmacy because this is the only pharmacy in the state that carries this drug compound. I had called in the refill yesterday because Addison used the last drop of it this morning. (exciting time out with my friend, huh) I went to the pharmacy (as I have countless times since March without incident) to pick up the refill. However, this time it was not done. Here is how that conversation went:

Pharmacist: There were no more refills.
Me: I know. They called yesterday and asked for the doctor's name (who was there at the hospital) so that they could fill this. I didn't hear back after that phone call, so I assumed that everything was OK.
Pharmacist: If we called everyone back, we would be calling hundreds of people.
(great business plan, huh?)
Me: I have never had a problem filling this before. We just ran out this morning. (I usually time it pretty close so that we don't have to fork over the $40 copay any sooner than we have to. This has never been a problem before.)
Pharmacist: We also noticed that you just refilled this perscription 6/1. Why did you go through it so fast. (looks at me suspiciously....note...the more common name for this drug is Viagra)
Me: Dr. Yeager increased the amount we are to give her earlier this month because she weighs more now. 2 ml every 8 hours.
Pharmacist: Oh. Well, we paged the doctor yesterday and we haven't heard back from him.
Me: We have never had a problem before. We ran out this morning. My daughter needs this to breathe
Pharmacist: That really isn't my problem. Also, you should know that this particular compound we can't do without 24 hours notice.
Me: I know. That is why I called it in yesterday.
Pharmacist: I can't help you until I heard back from your doctor.

Super frustrated for the second time that day, I ran up the stairs to the Children's Specialty Center to ask them to page Dr. Yeager. I was not leaving without Addison's medicine or a promise that it would be done by the next time that I needed to administer it (later today). I would not stand idly by while my daughter fights to breathe. (I know that sounds super melodramatic, but I was prepared to roll some heads if that is what it took to get her medicine today) Anyway, I spoke with a very kind receptionist who called Dr. Yeager's nurse Dawn (with whom I have had many phone conversations in the past). They got it all sorted out and the pharmacy meekly replied that they would have it ready in a couple of hours. What was with all of the nonsense about 24 hours notice???? Apparently a mom pleading for her child's ability to breathe with minimal effort isn't enough swing at a hospital pharmacy.

Ahhhhhh, it feels so much better to have gotten all of that out of my system. Seriously, why does it feel some days as if I am all alone in standing up for our family and our daughter. The word advocate took on a new meaning for me today.

After all of the drama was over, I was able to spend time with my wonderful friend Karen (who I rarely get to see) and my sister Andria and of course, Addison. So, in that respect, it was a good day. Whenever I even start to think about the other two incidents, I start to feel stressed out again. Yesterday when we were applying for Addison's personal care assistant, the person filling out the application stopped at one point, looked at me, and asked "What is your stress level like dealing with all of this?" At the time I said "Oh, some days are better than others"....If she would ask me today I'm pretty sure I would give an answer that I would regret later! Am I just being a drama queen? I feel like I legitimately got stressed today (even though I didn't yell at anyone), but now I feel guilty for filing a formal complaint against Tammy and for getting so frustrated at the pharmacy. Some days it seems that no matter how hard I try, it still isn't enough.

Tuesday, June 29, 2010

Coupons etc.

Since I moved to Vermont over two years ago now, I have endeavored to learn the magical art of couponing from a master couponer- my mother in law. (I realize I have now mentioned her in two posts in a row, but hey, I have a pretty great mother in law.) Anyway, these past six months or so have been not so great as far as coupons go because I have been in survival mode. One day at a time- one meal at a time. But, I have been feeling guilty to pay full price for items that I know that I can get cheaper if I just take the time to clip the coupons. So, today I attempted to jump back in the game. My very sweet sister, Andria cut my coupons while I was in an appointment for Addison (back to this later), and then we "organized" and set off.
The rule of the store is that you can't save more than you spend- you can see from my receipt that I happened right on that sweet middle ground. Today I saved the most I have ever saved during my meager career as a couponer. And, this receipt is the bulk of my purchases, but I actually sent my sister down a separate aisle with some coupons and items that were listed only as one per family....(she is a different family, right?) So the total we saved, drumroll please, was actually $127.51.
To save this, we spent $140.00. But, this bought us diapers, wipes, and body soap for Addison, all of the random cleaning and personal care products pictured below, and a weeks full of groceries (including a restock on soft drinks, juices, ice creams and countless other food items that I like to keep on hand but haven't bothered to pay full price for these last few months). All in all, I was pretty pleased.
I have a long way to go in my couponing, but I feel like I have made decent progress. Any of you couponers have tips for me? The time commitment is something that it is hard to consistently give, but hopefully this summer I will be able to continue with this trend. Also- I get so frustrated that the couponed items are things that I wouldn't necessarily buy, so sometimes I feel that I end up spending more to "save money". Today I felt pretty pleased with my purchases, but I will have to get a bit more creative with my meal making to use only what was on sale or what I had a coupon for. Shout out to Andria who helped me save so much today!

The appointment that I had earlier today- applying for a personal care assistant for Addison for when I go back to work in the fall. Because she will still be on oxygen, I feel a bit nervous about putting her in daycare, so we applied for this program where the government will pay someone to watch Addison for a certain number of hours a week, but I can pick and hire who that person should be and then train that person to continue working with Addison's developmental exercises even while I am gone. I hope that this program will work out for us, because it would be such a huge help, but it was super discouraging to apply because you have to focus on the negatives. We had to list out, item by item, what I have to do that other moms don't have to do- things that qualify Addison for extra care beyond what her peers need. Things such as- it is so much harder to walk from room to room while she is connected by a tube to the oxygen machine in the DR, you trip a lot, you get caught on doorways and the tube pulls- keeping an extra eye on her while she is sleeping because she pulls her cannula off her face, it dangles around her neck, and then she starts to wiggle around her crib- taking literally all day some days to feed her since she still is a slower eater, and she isn't gaining weight, so we are supposed to feed her whenever she seems even remotely hungry....etc, etc, etc. Anyway, just saying that it was a bit depressing to focus on the negatives instead of how well Addison is actually doing.
And to conclude this post, some pics of my angel:
Yes, I admit it. I am a horrible mother. Yesterday when she did eat all day without more than a 20 min break...I finally propped up her bottle and went to do some other things...she held out her arm and held it herself....I felt guilty to do this, but I had already been feeding her for 5 hours straight and was going a bit stir crazy....

She spends a great deal of time with her hands in her mouth....come on teeth....

all dressed up to go to church (thanks, Sheila, for the beautiful dress!)

Monday, June 28, 2010

Mama Bear

It is Monday morning. Outside I see very dreary things- clouds, rain. Addison decided that she would awaken at 5am this morning and has already consumed eleven ounces of milk between then and now (hopefully, growth spurt?). When she fell fast asleep for the night at 6pm last night, I should have seen this coming. But in spite of the gloomy weather and the lack of sleep, this Monday AM I am marveling at how blessed I am. I am sprawled out on my favorite white couch alternately typing and taking sips of amazing coffee (properly creamered, of course). Over to my right is Addison on her play mat- attempting to eat her entire hand and making little cooing noises. We just finished time in her jump up and bumbo seat and both her head control and leg dexterity have come a long way. I look forward into the day and realize that I can spend all day just being with my beautiful daughter! Holding her, feeding her, talking to her, coaxing smiles out of her, napping with her- these are a few of my favorite things! I also have a list a mile long of things to accomplish, but they are all things at home and all things that aren't on a time schedule, so Addison comes first. I have looked forward to today ever since I went back to work in the middle of April.
When I was pregnant with Addison and first found out that she has Down Syndrome, I would look around at all of my friends or random strangers who were pregnant and be so jealous. They didn't have to go through everything that I was- they were planning to have perfectly normal children who had bright futures. Today as I look into my daughter's beautiful blue eyes, I am struck with a powerful feeling of love and feel incredibly humbled that this beautiful, beautiful baby is mine. Jealous of other moms with "normal" babies? Not so much. I wouldn't trade babies with anyone. As far as I am concerned, I won the lottery of babies. Am I still apprehensive about Addison's future or frustrated that she is still on oxygen? At times, yes. But when Addison looks me in the eye and smiles from ear to ear- it lights up my world and nothing else seems to matter except for the overwhelming love and protective instinct that I have for this little girl. When Addison was born and put immediately into the NICU, my mother in law said that I needed to develop my "Mama Bear" instinct. Following all of the medical jargon even when it made absolutely no sense so that I could be the best advocate possible for my daughter. It is now almost five months later- Addison has been through so much during that time, including two surgeries and countless procedures and lab tests- I feel like my "Mama Bear" instinct has come a long way.
Anyway, this post has already rambled on long enough. For now, I want to go scoop up my daughter's wiggling body off of her play mat and just cuddle with her- feeling her arms wrap around my neck and her chubby hands grabbing onto my shirt while she snuggles her little head into my neck. Seriously, I can't think of a better way to start off day....I thank God everyday for giving me the most perfect, the most loveable daughter.

Sunday, June 27, 2010

catching up on our week with my siblings

she liked pushing her feet into the wet sand....

getting ready to go out for Aunt Andi's birthday....

This past week has been a bit of a whirlwind because on Tuesday morning, Evan and Sheila left for Minnesota and Tuesday evening, my sister Bekka flew in from Wisconsin and Wednesday my brother Jon joined us (also from WI) It was sooo wonderful to see them again! I hadn't seen either of them since last July when I flew out for a quick visit. Also the first time for both of them to meet Addison (and to see my house, but that is totally secondary. baby trumps house) We did fun touristy type things, but also- we would spend entire mornings hanging out in the living room, coffee mugs in hang, just catching up on life. It was so great to be able to just relax and be with my family! I have found the answer to getting people to come visit you even when you live far away- have a baby. ha.
All four siblings together for a visit in Vermont (the right 3 live in Wisconsin)

Sisters with their babies....(-:
My siblings:

Bekka
My older sister by 18 months. We have always been very close (and slightly competitive....) We got married two weeks apart(-:. She is having a little girl in October! I am so extremely excited for her and her husband Eric. They are really going to make fantastic parents! Bekka was a bit of a terror as a child, so we did quite a bit of joking about the antics that Bekka's child will pull on them....

Bekka's belly bump (-:

Addison was enthralled to meet her beautiful Aunt Bekka for the first time. She said "So this is who has been sending me all of those beautiful clothes...." We think Addison got her kissy lips from Aunt Bekka.

Brother Jon. Such a sweet guy to put up with three sisters. He usually goes along with us like a good sport.....his manliness is never questioned- even when we had him spending a long time yesterday helping us pick out the perfect necklace. It takes a true man to be patient enough to put up with three sisters! He will make some very lucky woman a wonderful husband someday!!!!! Addison loved Uncle Jon! When she first met him, she kept pulling the blanket over her head, pulling it back and then smiling at him....so cute! He got her a super cute outfit and shoes that actually stay on her (the shoes, not the outfit)! I will post pics of them later.

Andria. After she finished her school year (she is a college sophomore), she came to Vermont to live with us and take care of Addison for me while I went back to work. She also has been amazing in helping me clean, keep up with laundry and even brings me coffee in bed! I want her to live with me forever! Sadly, she is leaving next week to go back home to Wisconsin. She will be greatly missed. I am soooo thankful for her help these past two months. I would have gone crazy or had a stroke or something equally as awful without her help.
Here she is with Chubs. She is going to miss her niece!

Here she is on her 20th birthday. We got to all celebrate together for the first time in many, many years!

We'll turn her into a beach lover yet! (bathing suit from Aunt Andria)


Before Jon flew in, all of us sisters went to Applebees for lunch. Addison kept staring up at the wall and smiling and smiling. What was on that wall?

This very old saxophone....that should make Grandpa Dean very happy! Maybe she will be a saxophone player!

Aunt Bekka taught Addison how to use the phone...

you can see she loved this....give her a few years....lol

Once again staring at Aunt Bekka....can't wait until her cousin will come out and play!!!!!


Thank you, Bekka, Jon and Andria for the visit. I love you all very much! (shout out to mother and dad and Bekka's husband Eric, yes, you were missed on this visit....)

Friday, June 25, 2010

Which Pic should I print out and put on my wall?

Haven't posted in a few days because I have been busy with company! My three siblings have been visiting me from Wisconsin. Will post more on this visit later, but for now wanted to post some pics that my sister Andria took with her awesome new camera of Addison and I today. Love the ones of her smiling! Andria is such a wonderful photographer- also love the new outfit from Aunt Bekka!
1.
"you want me to smile...so i'm going to stick my tongue out instead..."
2.
happy baby
3.
loves to practice standing!
4.
love her smile! wish she hadn't put her hand in her mouth just then!

5.


6.

7.
talking to each other




8.

9.
check out chubs' smile

10.


11.
everything goes in her mouth these days as she is working hard on her first tooth!

Tuesday, June 22, 2010

Friends

Today we said goodbye to our dear friends Evan and Sheila and their little girl Tava as they head back to Minnesota. We miss them so much! They are such wonderful friends!

As I said goodbye, I couldn't help but reflect on friendship-my friendships. Growing up, my parents wanted my older sister and I to be best friends, so we were never allowed to have close friends outside of each other. While I can see some validity to this way of thinking, it also severely crippled me when it came to making friends once my sister and I were no longer living near each other. I struggle being a friend and have a lot of insecurities, wondering if I am "cool enough" to remain certain people's friends. Today I just took a step back and was extremely thankful for the wonderful, wonderful friends that God has put in my life that accept me for exactly who I am and who don't make me play mind games or dance around in a circle to make them happy. Friends that I am not always wondering if they are mad at me for some miniscule thing I did or didn't do- friends that are there to help me when I need it the most-friends who don't always need a big planned event, but are just willing to hang out- friends who continued to encourage me even in the darkest of hours when I found out that my baby had Down Syndrome-friends who even though we could be separated by hundreds of miles and I am a horrible phone person continue to be there-friends who ooh and aah over Addison when I need to hear it the most- friends who still come back the next day to teach me how to run after I gloated an unjust game victory until everyone around me was almost physically ill. (-:
I am happy to report that my sisters are some of my closest friends, but I am also so very, very thankful for friends who don't have to be nice to me because they are related, but still befriend me despite my prickles and standoffishness (if that is a word).
Anyway, this is a big THANK YOU- for putting up with me and for making life so much more enjoyable!
(If you thought this post was going to be about the sitcom Friends based on the title, sorry. but I do love that show!)

Sunday, June 20, 2010

Dear Daddy, love Chubs

This day was so crazy busy, the only shot I got of Addison in her Father's day outfit was when she was in her car seat before church this morning. Yes, I did adjust her seat straps....

Addison and I were talking earlier, and she asked me to convey this message to her Daddy for his first Father's Day:

Dearest Dad,

First of all, I poop on you because I love you. Second of all, I just want to say thank you for being such a great dad. From reading to me every night while I was in the NICU for 5 weeks (even after you worked a very full day) to driving the four hours down to Boston early in the morning just so you could be there for me after my surgery and then driving back a few short hours later so that you could get back to work- you have exemplified the type of behavior that signifies you as one of the best of Dads. I love snuggling with you, smiling at you, doing "fighter" Mcphee, and going on truck rides with you. I look forward to a lifetime of Dad/daughter moments with you because you make life pretty grand. I am thankful every day that you were chosen to be my Daddy.

Love,
Chubs McPhee

p.s. when are we going to have our first ski lesson?
p.s.s. i think you should buy mommy some raspberry plants

Saturday, June 19, 2010

Trapp Lodge/Swimming Hole

Fun, fun day! It started out with oatmeal pancakes and strawberries covered in vt maple syrup. Then, we headed to Stowe where we tasted Cabot cheese, Lake Champlain chocolates, chocolate hazelnut ice cream, chilled apple cider, and apple cider donuts. Then, we headed to the Trapp family lodge where we had a picnic up in one of the meadows. (yes, this day included a lot of eating!) On the way home, we found a really incredibly beautiful swimming hole. Because it was in the mountain, the water was still a little chilly (so Addison didn't care for it), but was very exhilarating to swim in. Hot day+ swimming in fresh stream water= Fun, fun day!
Addison's first day trip- to the Trapp family lodge....

What a perfect place for a picnic lunch!

sisters...

Andria and her new camera. She takes the best pictures!

My handsome husband...

Our little family



Aunt Andi

Friends!

Now without kids...



The awesome swimming hole that we found!

Chubs' first real swimming experience...

It was short lived because Addison wasn't convinced that the water temp was warm enough for her.


Sheila and Tava


Aaron and I took turns holding Addison while the other swam- it was really great swimming. When you sat in front of the waterfalls, it was like a natural jetted tub!

Nighty night

Yes, they were jumping from the rock...the water in the middle was quite deep.

Tava

Aaron mid-jump (yes, his farmers tan is so bad, it looks like he is still wearing a white shirt! lol)


Sheila and Addison after we returned home.

What a wonderful day!