Threepeas Weblog

Circles

threepeas — Fri, 27 Jan 2012 00:52:56 +0000

My kids love those books “If you give a mouse a cookie” and how one action leads to the next. I feel like I could have written a book like that recently about our doctors appointments over the last year.

If you take Gabe to the pediatrician because you are concerned that he is not gaining weight or growing she will send you to the GI doctor. The GI doctor will do a lot of tests including blood work to rule out celiac and a long stool sample (so much fun) to rule out fat absorption issues. When all of these tests come back normal the GI doctor tells you to talk to the nephrologist. The nephrologist tells you it’s not a kidney related thing because he has good kidney function so he sends you to an endocrinologist. The endocrinoligst is a complete idiot and tells you to feed Gabe more McDonalds and cheetos. You then go back to the nephrologist and he says he doesn’t know any other endocrinologists to go to. Frustrated you go back to the pediatrician who gives you the name of another endocrinologist. You take Gabe to see the 2nd endo and she runs blood and does a bone age. When she gets the results she tells you Gabe is a perfect candidate for growth hormmone but she is not going to prescribe it because the nephrologist is (she claims he told youu then when you visited him 6 months before). You are pissed and tell her you would not have gone through the trouble of seeing her. After the new endo tals to you she says she won’t see you again and you should go back to the nephrologist. So you go back to the neph so he can take a weight and height and he applies for insurance. After a few weeks you make sure the process has started but the neph claims he was waiting for you to give him the go ahead. He finally starts the process and a few months later the insurance company says he did not fill out the paperwork correctly. After the neph finally fills out the paperwork correctly the insurance complany flat out denies it. After the insurance company denial your neph says he cannot help you. So after the insurance company denies it and your neph says he cannot help you, you become even more frustrated and decide to go to yet a third endocrinologist, a new nephrologist, and a new GI doctor. It is now a year and a half later than that first GI appointment. The new endo does more blood work and a new bone age scan. When you return after 3 months and Gabe hasn’t gained any weight or grown at all the new endo says she will prescribe growth hormone but you need to do a brain MRI as well. Before you schedule the brain MRI you see the new GI doctor who says he wants a liver and abdominal MRI. You schedule the MRIs. Then you take Gabe to the MRI’s, which turn out to be a four hour test under sedation with intubation. The MRI gives Gabe swollen vocal cords and makes you sad that he even has to do all of these tests. Gabe then misses school and the principal makes obnoxious blanket statements about kids missing school and not being able to participate in school activities on those days because in high school kids often skip school but then expect to go to a basketball game that night After the MRI and principal issues the GI doctor calls and tells you the MRI showed abnormal bile ducts and a backup in the gall bladder. Because of the back up in the gall bladder you now need to see a hepatologist. You take Gabe to the hepatologist who prescribes a new medicine but says this is not why Gabe isn’t gaining weight. In the meantime you talk to the endo who now says she wants to hold off on growth hormone because of the liver issues. So now you go to the pediatrician because Gabe isn’t growing or gaining weight.

I think we just made one big circle….. two years later. Besides the fact that Gabe is now in the 2nd percentile for height and weight we are now back at square one.

Frustrated

threepeas — Thu, 15 Dec 2011 21:33:02 +0000

Gabe is going on a field trtotomorrow with his kindergarten class. They are taking a bus for about 45 minutes. He’s been getting really car sick lately and feels very nauseous and occasionally throws up. I’m chaperoning the trip, but driving my own car there. I emailed the teacher yesterday and said I might just take Gabe in my car since he gets car sick. Her response was: “In regards to Gabe coming on the trip, according to the school policy, he must be in attendance at school and ride the bus in order to come on the trip”.

This just made me mad for so many reasons. One is I’m sad for Gabe that he has so much to deal with in his life in general. So if I can make one morning better for him so he doesn’t get sick what’s the harm. And is that a district policy or just a weird school one? And regardless of whose policy it is there are always exceptions to the rule. The bus is not handicapped accessible so what if my child were in a wheelchair? It’s just frustrating that was the response. Not how can we help. What can we do to make this better for you?

Gabe is being sedated Monday for four MRIs. I know I’m stressed and scared and that is making this all the worse, but I’m just frustrated with these cookie cutter responses and no empathy for Gabe’s situation.

Me

threepeas — Wed, 23 Nov 2011 12:29:32 +0000

Last Friday a friend of mine invited me over for lunch with herself and three other women. We all have children in the same school district. I am friendly with the woman whose house we went to and also one of the other women that was the there. And I know the other two. Before I had kids and was just working I often felt like I didn’t have a lot to contribute to an adult conversation since I spent my days with kids at work. Then when I had Max and then Nate I still felt that way but could often just talk about them. Plus when I was with other moms it was easy to talk about our kids. But last Friday I felt lost at the lunch table. I again felt like I didn’t have a lot to contribute to the conversation. I only wanted to talk about ARPKD and all of the medical stuff going on with Gabe.

I often feel different than other moms around here. I like to volunteer with the PTA and in the boys classrooms just like all of the other moms. But I feel I cannot relate to these moms I see on a regular basis. I cannot relate to their complaints about every day things but also cannot relate to their lives in general. Max received an amazing report card today. And yes, I am so proud of him and know he worked hard to achieve it. But I can’t let myself just be excited about that. In the back of my mind is all the worry about all of the medical stuff going on.

I admit that I have a very hard time staying in the present and often worry about the future. But right now so much is going on in the present with Gabe that I don’t even have time to necessarily worry about the future. Which brings me back to the fact that I feel like I don’t have anything to contribute to any type of conversation other than when someone asks me how Gabe is doing and really wants to hear the answer.

Bad Blogger

threepeas — Thu, 10 Nov 2011 01:43:38 +0000

Wow… I have been so bad with writing lately. I often think in my head of a post I would like to share and then never get around to actually writing it! These are some of the things going on around here lately:

1. Gabe had a bone scan yesterday of his hand for our endocrinology appt on Friday to talk more about growth hormones.

2. We have an appt with a new GI doctor next week for a f/u appt. Our old GI doctor wanted us to consider tube feeding Gabe. He eats well but isn’t gaining weight. So we went for a second opinion.

3. We broke up with our old nephrologist and are moving to a bigger institution in the city.

4. Nate has been giving me a really hard time lately and I am at a loss with him.

5. Max is doing so well with everything. He loves middle school, is getting tall, and is just so sweet.

6. Bill collectors are calling left and right for medical bills I am still trying to sort out with insurance. Crazy!!! Insurance is crazy!!!

7. I went on a girls’ weekend last weekend and had a blast!

8. My nephews bar mitzvah is this weekend and there is crazy family stuff going on I know that’s not a surprise but I’m not in the mood!

9. Our team raised $19,557 for the Walk for PKD.

So that is my life in a nutshell. I need to be a better blogger and also need to expand on some of those topics very soon.

2011 Walk for PKD

threepeas — Thu, 06 Oct 2011 02:38:47 +0000

On Sept 24th we participated in our 6th Walk for PKD with the Hudson Valley Chapter. It was once again a great walk! We had our biggest team yet with 55 people walking with us. It was amazing! We felt so overwhelmed with the awesome support from our friends and family. This year besides our team three peas shirts we also had 3P’s hats that Matt designed. So there was a sea of blue and green throughout the walk which was great!!! As of today our team is at $15943, but I know I have $2000 more of donations to submit. So I am hoping once all is said and done I will be over $18,000. In this economy that is absolutely unbelievable!!!!! To raise all of that money and raise so much money for ARPKD really helps me feel like I am doing something with this diagnosis. And I actually think when we do the walk it makes Max feel special, as strange as that may sound.

If we are get up to $18,000 this year then we will be close to $100,000 for our total from all 6 walks. I cannot even fathom that! We did over $17,000 our first year, over $13,000 our second, over $14,000 our third year, over $16,000 our fourth, a whopping $23,000 last year, and now $18,000 more.

To fight or not the fight

threepeas — Tue, 04 Oct 2011 01:51:42 +0000

That is the question!! So here is my dilemma. We are having a problem with the bus for public school. In the mornings it is not as bad as in the afternoons. We live a mile from school but it takes them 20 minutes to get there. In the afternoon Gabe sits in the gym waiting for his bus for 20 minutes because it is the last bus to arrive and by the time they load everyone on that is how long he has to wait. So he waits for 20 minutes and is on the bus for 20 more minutes and often comes home wet.

Here’s my dilemma. Do I fight the system and have it added to Gabe’s 504 that he needs limited time travel on the bus and needs to be the last one picked up in the morning and the first one dropped off in the afternoon? Or do I just drive him both ways. My concerns are that I want him to be like all of the other kids and ride the bus like a normal elementary school kid!!! But I don’t want him or anyone else to look at him in a different way if he is the last one picked up and the first one dropped off. On the other hand I’m not sure I should fight this one and should save it for a bigger issue that will most likely come up in the future. But I’m not sure I want to be tied to driving and picking up every day!!! But of course I am going to do what is best for Gabe.

Of course this whole thing makes me sad for Gabe. Sad that he is wet when he gets home. Sad that I even have to worry about these things. Sad that I have to fight for everything!!! Sad that he and Max have this disease!!

And… I’ve been a really bad blogger! I am going to try to get better. I have a lot to blog about!

One of many

threepeas — Fri, 19 Aug 2011 03:06:10 +0000

One of the many things I have been stressed with this summer is Max’s 504 plan. He has had a 504 through the elementary school since 3rd grade for access to the bathroom, water, and nurse, and breaks from tests if needed. In May I started talking to the learning facilitator (LF) about how it would work since he was moving to middle school. She blew me off for a while and told me not to worry about it and finally told me the week before the last week of school we would have our meeting the next Monday. I show up for the meeting and the only people who are present are the LF from the elementary school who is not the same one for the middle school and the elementary school vice principal. We start the meeting and the LF says she spoke to Max’s teacher and there were no issues this year so we can continue with the same plan for next year. I said I wanted to add for him to have “access to a controlled temperature environment” since he was moving from an air conditioned school to an unconditioned one, except for the library, nurses office, and main office. I want him to be able to say it is too hot for him and he needs to cool off in one of the air conditioned rooms. The VP immediately said that is not something they typically put on 504 plans. Now in my head I’m thinking I don’t really care what you “typically” put on a plan and really I only care what is on my son’s plan. And besides the fact that ARPKD really isn’t a typical disease! So I said that Max really cannot tolerate the heat. The VP then said that most kids cannot tolerate the heat. Huh??? I had to bite my tongue and I looked at her and said I wasn’t sure she understood the seriousness of Max’s medical condition. So we ended the meeting with the LF saying I needed to get a letter from the doctor. So I had the pediatrician write it on the medical which was not enough so the last day of school our nephrologist emailed in a letter. The LF again stated the VP was very against adding this to the 504 and also I needed to deal with the people at the district office. So on July 1st I emailed the person at the district office and the district nurse. On July 11th I called and she claimed she hadn’t read my email yet. She said she would look into it and get back to me but the district nurse might have to call the doctor, even though they had his note. I personally think that is a waste of everyone’s time but whatever. Also at that time I told her the LF from the elementary school had put the wrong dates on the 504. Scary, huh? A few days later in the mail I get both Max and Gabe’s 504′s with the corrected dates but Max’s has nothing about the “controlled temperature”. I left a message for the district person the next day. The next week a man from her office called me and said his supervisor had told him to call me to discuss everything. He said he would look into and get back to me. I finally called him the next week and he said he had nothing to do with it and I needed to call his supervisor (the person I had originally dealt with who then outsourced me to him). Huh??? Then I went out of town for a week and finally last week I left a message on Monday and then on Tuesday. Then I emailed an old friend of Matt’s who just happens to be the secretary to our superintendent. She said the district person said it was all set but if I had any more questions I could just ask the LF at the middle school when school started. NO WAY was I waiting for school to start. So I left another message and emailed with all of the above and all of the dates and how this had been going on for so long. She wrote me back that she has been very busy and does not like to make changes to a document she did not generate so she was referring it back to the LF who generated it. Um….hello….. that was at the elementary school and now he is going to the middle school. I finally got ahold of her this week on Monday. I told her that the LF who generated it said I needed to deal with her and that I wanted it finished before the first day of school. Then she told me how busy she was and I told her that was not my concern and my only concern was getting this 504 accomplished for my child who has a serious medical condition. Then she tried to give me the run around of when I would actually receive it. So finally I calmly said that I wanted all of the changes made and expected it to be in my hands by a week from tomorrow and if it wasn’t that I would be calling the superintendent. And guess what?? I received it the very next day. How ironic is that? And how very frustrating is that as well. Now can you imagine a parent who doesn’t speak English or maybe isn’t as educated as I am trying to fight this bureaucratic crap for something that is pretty simple like typing up a document like that one.

And that is just one very small thing I have been dealing with this summer….. more to come soon!

Monday Memories

threepeas — Mon, 15 Aug 2011 01:47:18 +0000

our recent trip to Canada

In honor of not posting all summer long I am posting a recent picture of the boys! They are getting so big and have been keeping me quite busy this summer. I am hoping to get back into blogging. I have a lot to catch up on….Gabe’s appointments to a GI doctor, the urologist, and soon new endocrinologist. Max’s 504 issues. Nate’s emotional stuff. Me in general:) My two appointments with possible new nephrologists. But for now just a cute picture of them.

How hard could it be

threepeas — Thu, 09 Jun 2011 02:20:19 +0000

You would think when you live in a big city that finding a new doctor would be easy, but it actually isn’t. I’m thinking of switching one of the boys’ doctors. I called four different offices today and this is what I came up with. The first practice I called at a very prestigious NYC hospital said they would not let me do a consultation with the doctor without forwarding our medical records and me bringing the boys with me. So that was strike number one. The second one I called said I could not schedule an appointment with a specific doctor. There is a team of doctors and they rotate around and you never know who you will see until that doctor walks into the office (also at a prestigious NYC hospital). Strike 2. The third one said they were not booking until September but did not have their calendar for September to book in. Huh???? Strike 3. The fourth one actually had an appointment available in July which I took but a friend of mine used to go to this practice and is adamant that I shouldn’t go there. Hmmmm……. I might have struck out. And maybe my original doctor looks a lot better than he used to!

Money

threepeas — Thu, 02 Jun 2011 02:07:22 +0000

Growing up my dad would always call me a communist. He often joked and simultaneously complained to me to get off of my soap box. I always had something I was talking about or ranting about! He told me I should be a lawyer because I liked to argue my case. The main reason he called me a communist though was because I always had issues with money. I felt that there should be salary caps. It always sickened me that some people made so much money and not necessarily because they worked any harder than anyone else. It bugged me that these athletes and movie stars made so much money and then others who worked just as hard if not harder as teachers and nurses and police officers and firemen and just any middle class job didn’t make the money. Or those who didn’t have the opportunities to even have those professions and worked two or three jobs and couldn’t make ends meet.

Money is such a controversial subject. And I still get so frustrated by it. I know I grew up in a fortunate family. I also know I am fortunate now to have a husband who has a job and has health insurance. To have a roof over our heads. To be able to put food on the table. I read somewhere recently that the middle class is statistically more philanthropic than any other class. I find that an interesting fact. I guess lately with all of these medical bills coming in and our insurance paying for less and living in the money orientated place we do I’ve been thinking more and more about it. Also given the fact that Gabe was denied growth hormone through our insurance, which we are still fighting, but that it costs $2000 a month and not something we can afford on our own. So money sucks is what my final point is!! And maybe I am a communist at heart