Archive for December, 2008

it makes me crazy

Every six months when we have to do blood work for the boys I get crazy. I hate that in the first place we have to do blood work. I hate having to wait for the results. I hate stressing over the numbers that are out of the “normal” range. I hate the feeling I have afterwards of things to come in the future. I hate that Matt always leaves the appointments with a positive outlook that the boys aren’t in kidney failure. I hate that I always leave the appointment thinking that even though we are not even close to kidney failure there is a change in numbers and I have to think about it and worry about it. Ugh. Too much in my head.

We had our six month appointment with the nephrologist today.  Max is VERY  status quo and has 100% kidney function. We just need to keep an eye on his blood pressure since he has grown.  Other than that all is very quiet with Max.  Gabe is also doing well relatively so compared to other ARPKD children.  But, his iron levels are extremely low and have dropped a considerable amount in the last year. But my nephrologist doesn’t want to treat it he wants us to discuss with our pediatrician.  Then Gabe is low on the weight and height chart. 10% for weight and 5% for height. Something we need to keep an eye on. And then his GFR (indicator of kidney function) has gone down slightly.  It is still okay but possibly going down which would indicate the beginning of kidney failure.  We have to retest in 3 months.  He did have a virus last week which could be the cause of the lowering of the GFR.  Also, both boys platelet counts jumped down but at this point are still well above normal but yet another thing to keep an eye on. This would indicate enlargement of the spleen from the CHF and portal hypertension. At this point we are still good but just something I will be thinking about.  

It just boils down to the fact that I hate that the boys have this disease and hate that it makes me so crazy. It’s not all about me and really only about them and their health but this blog is all about me so I have to vent about all my craziness.

December 23, 2008 at 5:54 pm Leave a comment

CRANKY

My birthday was yesterday, which was a nice day. The boys bought these boxes for me and painted them and then put special things in them. They were perfect gifts. And Matt bought me a hand blown perfume bottle with a dragonfly on it. I love hand blown glass, collect perfume bottles, and love dragonflies. So that was all perfect. But I get kind of weepy around my birthday. Time just goes by way too fast and I don’t want to keep getting older. Plus Gabe has the croup again really badly. I know it’s just the croup but I hate hearing him like this. And tomorrow Max and Gabe are having their labs done for their six month appt with Dr Awesome which is next week. I am assuming things will be status quo with kidney function but I always get cranky right before the appt. I start feeling slightly sorry for myself and just wishing we didn’t have to worry about anything and that our life could just be easy. I recently reconnected with a high school friend and in his first email to me after he saw a picture of the boys he said “it looks like you have 3 healthy boys”. Well where do you go from there. You either don’t respond or go in to the long drawn out version, but either way I don’t feel good about it. I don’t want to not respond but sometimes I just don’t want the response I might get. 

So really I have no big reason to be cranky but I am and thought I would blog about it. I’ll update after their labs are done.

December 16, 2008 at 11:10 pm Leave a comment

kids

This was a first for us. Having to go to the pediatricians for something up the nose. This is obviously better than going to the pediatrician for just about anything else but still isn’t so much fun. Gabe came upstairs and said he had something up his nose.  I looked and saw something but by the time Matt grabbed the tweezers it was too far up for us to grab. So off to the pediatrician who luckily had these really long special tweezers and grabbed it right out. It was a small round lego piece. You know the ones that sometimes go on the end for headlights.  Ah, kids. Aren’t they just so funny!  

But on a side note I am still really pleased with our new pediatrician. They fit us right in today and we only waited maybe 15 minutes at the most to see the doctor who was extremely nice.  So far so good.

December 13, 2008 at 1:25 pm Leave a comment

My father in law

My father in law really is an amazing person. He truly wants to do things for others. And besides that loves my boys more than anything. He takes them out once a week to dinner all by himself. Just him and my three boys. Isn’t that so nice!!!  But besides being so nice and caring he is also a very sad person. I think he was probably always a moody person but I definitely think things have been worse since Michael (Matt’s brother) died in 1995.  Obviously this would change a person. But now there is this sadness to him. And yesterday he reminded me that Michael would have been 39 years old on Tuesday.  How do you respond to that. It’s just so sad, and unfair, and depressing, and ….  It hurt hearing it and I know it hurts him thinking about it and I know Matt thinks about it too.  The subject came up because Gabe was singing the birthday song and saying “are you one, are you two….” and I said I’m going to be 38 on Monday. Then John said that about Michael and it made me appreciate my 38 years.

December 11, 2008 at 6:26 pm Leave a comment

Pit

I have this pit in my stomach. I am going out of town tomorrow for a few days which I am happy about but I hate to fly. I’m actually really scared to fly so that could be one of the reasons. Another one is that I used to be friends with this person a few years ago and we lost touch. I have recently had the opportunity to be in touch again through work and she does not want to start up a friendship again, and this makes me sad. I have tried now a few times. I emailed a couple of times and the last email said I was glad we were in touch again, but she didn’t email back after that. Then her sister told me she was getting married so I left her a message on her cell phone congratulating her and telling her I would love to catch up, but no return phone call.  It makes me really sad and actually hurts. I don’t have a ton of friends and when we were friends she was a good friend to me.

I just realized this is my 100th blog post!! Hurray for me.

December 4, 2008 at 9:51 pm Leave a comment

Giving Thanks

I love Thanksgiving. It’s always been one of my favorite holidays. This year we had it at my mother in law’s house, which I’m sure you think I’m happy about since I didn’t have to cook. (our kitchen is still in gutted form – that’s a whole other story). But really I missed having it.  Starting in 2004 we’ve been having it here and I really like it.  It’s the kind of holiday that makes me warm and fuzzy inside. One thing I want to start doing though is to go around the room and say what we are thankful for. This is what I am thankful for this year:

1. My boys – all four of them

2. Max and Gabe’s status quo kidney health

3. Nate’s health

4. Matt’s health

5. My health – besides the whole Meniere’s thing but I’ll take that over a lot of other things

6. Our health insurance

7. The roof over our heads

8. Matt’s job

9. My part time job

10. My sister – whose an amazing support to me

11. Claudia – my awesome nanny who besides loving my kids so much and taking such good care of them also takes such good care of me by cleaning my house, doing the laundry, and keeping me organized!!

12.  My family – parents, in laws, siblings, niece, nephews, aunts, uncle, cousins, Matt’s grandma…

13. The fact that we still have somewhat of a retirement fund in the bank

14. The fact that we are not bankrupt

15. Two paid off cars

16.  Food on my table for every meal every day

17. Friends who support me (you know who you are)

18. A foundation that supports my children’s disease (even though I wish they didn’t have PKD I am so thankful that the PKD Foundation exists)

19.  My life

20. My boys (again I have to mention them)

 

Except for my boys being first and their health status being up there near the top everything else was not in a specific order and I really am thankful for so many things. I really do have so many things to be thankful for in life.  I often complain here about many things going on in my life. And yeah the whole PKD thing really does suck. But I have three beautiful boys and an awesome husband who all love me, a roof over my head, food on my table, an extended family, many friends…… and I’m lucky and thankful.

December 2, 2008 at 7:26 pm Leave a comment


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