As told by Kat

Tuesday, 7/7

// July 7th, 2009 // 2 Comments » // Boston, Health, John, Kat, Rachel

I had an hour long consult with Dr Darras and Rachel and we went over her history, the notes from the other physicians at Childrens and he did the typical “neuro exam.”  And he looked at her eyes as best he could without dilation.  We agreed upon an MRI with contrast, EEG, Skin Punch *AND* we are testing for Batten Disease.  Batten Disease has been on our minds for a few weeks and I was not really surprised when it came up and I jumped at the chance to have her tested for it.  Watching her decline due to some currently unknown cause is really really difficult.

Keeping her, my daughter, separate from her actions is almost impossible.  I am so glad that this stage of testing is happening over the summer because I think that would have sent Rachel and me over the edge.

Also, I wanted to post this micro conversation I had with her today.

Me:  “Rachel, what did I talk about with the doctor today?”

Rachel:  “Because I’m a good daughter.”

Her language skills (receptive and expressive) have been problematic for quite some time but I wanted to write this one down because, somehow, it seemed relevant.  When I am meeting with a physician they ask me all sorts of questions and I answer them in full with as much detail as I can offer and although she is sitting 3 feet from me, it is like she has no idea what we are talking about.   Her working memory has been poor for a few years as has her language skills but she is definitely getting worse.    I just wish I knew why.  For better or for worse I want to know what is doing this to her, if there is any treatment and the prognosis.  Several of the possible diagnoses are fatal.  I have mentally accepted this but emotionally… I am swimming in the fucking river of denial.

Rainy Tuesday

// June 9th, 2009 // No Comments » // Boston, Fitness, Health, John, Julie, Kat, Life, London, Rachel, Work

I figure I will make this one a public entry.  For those who don’t know, we have (within the last month or two) found out that Rachel has a very significant vision problem that is actively degenerating her retina and her optic nerve is very affected.  We have done lots of blood tests to find out the source but ultimately she needs to have an ERG test completed for a definitive answer.  The ERG was scheduled for a few weeks ago but it was too much for her and we could barely even “drop her” (with the different kinds of eye drops required) so we are awaiting a miracle (LOL) in the schedule of Dr Ann Fulton at Children’s Hospital who can do an ERG under general anesthesia.   We have upgraded her IEP for next year and as a part of that, Rachel is (RIGHT NOW!!!) undergoing a functional vision assessment at school by a Teacher of the Visually Impaired.   The vision appears to be a symptom of something much bigger and we are working with a geneticist who is looking for specific stuff (including some chromosome deletions) that might be responsible for a great deal of things.  All of this takes time.

Julie and Rachel will be out of school in about 2 weeks and my Juliebean is GRADUATING PRESCHOOL next week in preparation for Kindergarten!  The girls both have their school concerts on Thursday so expect to see some pictures up here at the end of the week!  Rachel is now 9 and Juliebean turned 5 in March.

The boys are doing well and are the best of friends.  London is into playing Indiana Jones Legos and in the sandbox with Julie and Boston is a professional laptop destroyer and amateur escape artist.  They are healthy and obnoxious and eating me into the poor house.  Just as it should be.

I have lots of doctor appointments lined up for Rachel and hopefully this summer will bring us some answers so we can know how to best apply our efforts.  The girls won’t be doing summer school (at my request) so I will be trying to think of some fun summer ideas.  We did join the zoo last week so I will certainly want to get my money’s worth (LOL).

Most importantly I look forward to watch them just be kids.

John had nose and throat surgery on Thursday so I’ve been playing nursemaid with the help of the kids.  He is on the mend now but I am sure is drooling at the thought of steak right now even though he is nowhere near ready for that yet.  I’m sure it will be another week before he is better.  The nose is healing faster than the throat (he had his uvula out and his nose fixed).  No more snoring!!

Drop me a comment if you’re out there…

vbulletin 3.7 (Beta 4)

// January 28th, 2008 // 1 Comment » // Health, Work

I’ve had the pleasure of being able to “play around with the latest and greatest version of vBulletin, the leading PHP based forum / community software. I can’t get over how far this software has come with new features, security fixes and amazing ease of contribution installations. I’ve really loved getting to know Fireboard and its seamless integration into Joomla, but vBulletin just makes my me really excited about the features they may release when this goes Gold!

2008

// January 8th, 2008 // 3 Comments » // Boston, Health, John, Julie, Kat, Life, London, Rachel

Last year went by and at times it seemed to go by slower than watching grass grow and and the second half of the year went by in the blink of an eye. 2007 was a good year for me because I was not pregnant for the ENTIRE year and had the chance to give my body a much needed and deserved break. I’ve gotten the kiddos quite a bit of help with their speech delays and other treatable delays and I feel really good about that and my role as a Mom. The real challenge these days is trying to balance our four children, their activities and the demands of owning our own company. It is very important that the children get some one-on-one time or modified 1/1 time where they have two-on-one time. Either way, I think the individual time with the kiddos has really helped them to develop and grow as individual people.

The boys are in daycare 3 mornings a week. Who would have thought that I would actually do daycare. Trust me it has been hard to let the boys go, especially in the beginning that they didn’t want to go. In retrospect, I think some part-time daycare would have done a world of good for Rachel. Julie, well, she wouldn’t have been able to tolerate it whatsoever and it is just more evidence to me that her preschool program is *INCREDIBLE*.

Work has been very good to us since we opened the shop in October. Sometimes John and I are “at each other’s throats” and that is usually because he has had several nights of being gone on service calls. The money is great, I mean, we are really making some headway with our finances. I seem to get overwhelmed after having the kiddos all day, especially if I never get any relief. We are working it out. I’m sure we’ll fight over this particular topic at least 200 more times but I kind of go back to the thought of “We only fight because we love each other.” Lot’s of women would probably be thrilled if their husband was gone a lot. I try not to think about it too much.

There isn’t really anything new going on in my life. I’m working on multiple websites, John has a steady stream of computers to fix. The kids are all healthy and really growing with the different therapies that they now have access to. We still don’t go to the doctor (knock on wood). I am planning a long weekend to Colorado by myself in March, planning on a weekend to Kansas City with Rachel in May. And last, but certainly not least, we are planning to take a week long family vacation. We had initially thought of taking a cruise but I think we’ll end up renting a house for a week, maybe somewhere in New Hampshire. All it needs is a hot tub, gates on the stairs and access to a swimming pool (and maybe an amusement park). Definitely a hot tub. I think all 6 of us just need a brief escape to recharge and rather than going on a cruise, maybe we’ll try a quieter, more local approach.

That’s about it. Sorry for the boring entry. In my experience, though, boring is what we all aim for.

Wednesday au jus

// August 8th, 2007 // No Comments » // Boston, Good Stuff, Health, John, Julie, Kat, Life, London, Rachel, Work

I will resume my blog soon, I promise.

The marriage has been going pretty good and I am very happy about it!

The girls are great, their summer school finished a couple of weeks ago.

The boys are coming up on 1 and 2 and I cannot freakin’ wait! Once Boston turns 1, I’ll take a deep breath and start to look for the light at the end of the tunnel.

This weekend I plan on taking major amounts of pictures and will share them with y’all. I have had a horrible relationship with my digital camera and have been terrible about taking pictures because of it.

School starts in 5(ish) weeks for me and I am working on getting John enrolled as well. : – o

Suprise!

// September 6th, 2006 // 4 Comments » // Boston, Health, Julie, Life, London

John wasn’t feeling well again and the children were asleep. I pull up our JohnVo (think TIVO but a LOT better) only to find that “House” had recorded. I’m always up for a good rerun so I hit the “play” button and about 5 minutes into it I realize that I was watching the season premier.

Without my husband.

I should feel guilty, right?

No. I didn’t think so, either.

I have a midwife appointment this morning which I really don’t want to go to. She seems nice enough based on her picture on their website. I just don’t want an invasion into my life and “how are you doing?” If I had something to say, or I needed to be seem by a health care provider, I would make an appointment. I hate peeing into the cup. I have absolutely despised that activity every single pregnancy.

Nurse: “Can I have a urine sample?”

Kate: “Um, no?”

If you ask me like I have a choice, don’t expect me to say yes. I like putting my urine inside of the toilet bowl, thank you very much! LOL Yeah, I feel badly for them as well. I guess I am the token difficult patient. If I were to really be ill, or really need to see a doctor, I am the most grateful patient going (reference the UTI of 2002).

I’m 35 weeks pregnant and today is my second prenatal appointment and I still haven’t done the blood work. I don’t want to do the blood work. I absolutely hate it that you have to drink the glucose drink at the office, in front of the phlebotomist. What is that? Are we inmates? If they can’t trust me to drink something really unhealthy, don’t expect me to show up and wait for an hour. I test my sugar regularly, I don’t have gestational diabetes. I know I am anemic, thanks.

Going into a hospital to give birth at this point is my worst nightmare.

(I feel much more positive now that I got my negativity out. Better on my blog than IRL).

I think today kicks off “weekly” prenatal appointments until I give birth. Pity the person who asks me for a group b strep sample today.

CNM: “Kate, we’d like to do the group b strep test today.”

Kate: “I haven’t been feeling well, if you know what I mean. Can we do it next week?”

LOL. Yes. I’m terrible. I definitely know.

Here is Julie on her first birthday (March 2005):

London is 11 months this week and still has no sign of any teeth.

Ollie Ollie Oxen Free

// August 25th, 2006 // 1 Comment » // Boston, Health, John, Julie, Kat, Life, London, Rachel, Work

My name is Kate (the wife/Mommy)and I turned 28 yesterday. I do most of the writing because John (the husband/Daddy) who is a geek by nature and by trade doesn’t seem to pay much attention to email and blogs. Together we have almost 4 children.

Rachel is 6. She is a great kid who is always trying to be friends with everyone she meets. John and I definitely find it a challenge to balance our attention to Rachel (formerly known as Glue or SuperGlue) because she is 4 years older than her (next) younger sibling. Rach is about to start the first grade and she can’t wait! There are a lot of things I am hoping that she will learn early on and it won’t be too painful. We kept her out of public school for the most part during Kindergarten and have recently given up on plans to homeschool her because our proverbial “plate” is too full to give her the attention that she both needs and deserves.

Julie is 2. Formerly known as Firecracker and Fire, she is definitely our “challenge.” The first 9 months of her life I spent walking her around the house, on my hip and in the “facing out” position. She would scream and scream and (!)scream(!). For some reason I never had the thought cross my mind, that maybe she would be a difficult toddler.

In retrospect, I feel like a dumbass.

I remember thinking “If she could just sit-up and play on the floor.” Or “if she could just walk so she could entertain herself a little bit better.” Our Julie has a heart of gold, but she is a very trying child. Lots of screaming, lots of collapsing on any floor: carpet or concrete, at home or in public, wet or dry. Now I am saying “if she could only communicate better.” Right now she is a “hitter” and tends to forcefully try and take what she wants… whether that be from her older sister or her baby brother (Julie is a *very* tall 2yo). Julie is as smart and as high strung as they come. I think she might try and take over my business in a hostile takeover before preschool starts. LOL

London is 10months. The sweetest and most easy going baby I have ever had the pleasure of knowing. He is very much like Rachel was as an infant and we are really enjoying him. I think within the next couple of months his vocabulary might surpass that of his sister Julie (18 months his senior). He is sitting up, pulling himself to a stand and flirting with anything or anyone that has a heartbeat. He is a dream baby! Already a member of our family. Clapping, answering questions, and talking quite a bit more than I ever thought was possible. (See the above sisters who were/are late talkers).

Boston is t-minus 6 weeks (I hit the 34week pregnant mark in 14 minutes). Boston is due to arrive 3 days before London turns 1.

Yes. We know what causes pregnancy.

No. It isn’t in the water.

John and I met online in October of 2001 through Yahoo.com after we were both previously married. After living in sin (without the safety pin) we got married in November of 2003 and have been quickly building our family and are *done* after Boston arrives. John is definitely a “foodie” and shares my passion for small business, home improvement and hanging out with our children. Our dream is to continue building our businesses, remodel a large “dump (my word for fixer-upperer) and have a gourmet kitchen and teach all of our children how to do all three (small biz, remodeling/decorating and cooking).

On a totally random note: Next spring we are going on a cruise to celebrate my parents 40th anniversary and we vow not to be “the fat ones” on the ship. Not out of everyone on the ship. We’ve been on a cruise together before and there is no way I could gain *that* much weight, some of the people on cruise ships are unbelievably obese. My goal is not to be “the fat one” out of all of my family members that are going.

All I know is that I have lived in maternity clothes for the last 3 years and I am donating all of my maternity wear in November. Goodbye Motherhood. Goodbye Take9. Goodbye Old Navy Maternity.” I will *NOT* be missing you. I’ll slowly wean myself off of maternity clothes and maybe buy a few Lane Bryant items… and then will work my way back into Old Navy clothing…. I can’t wait to get rid of my dumpy clothes. I love my babies. I love my stretch marks. I love my breasts as they are. I am not ashamed of my body or how it has changed after making four human beings.

But if I never see another maternity outfit with the hideous looking maternity panel again (after Mr Boston arrives), it will be too soon! I am very blessed to have a working body that makes gorgeous babies, but I am done making them. Put a fork in me, Jose Cuervo and pass me a margarita. I am *DONE*!

Pregnancy #4

// April 25th, 2006 // 2 Comments » // Boston, Health, John, Julie, Kat, Life, London, Rachel, Work

I’m 16ish weeks with #4. We have decided to call him “Boston” and if he is a she, we have no names yet. My stomach is starting to pop out and as soon as I feel that I look more pregnant than fat, I will post a picture.

On a side note, FireCracker is calling LittleMan: “Boy.” When LittleMan is asleep, FireCracker goes searching the house calling “Boy?” “BOY?!” It is very cute.

SuperGlue is going to Boston for a week without me, accompanied by her Granny. I don’t think it has hit her yet, and it probably won’t until she gets there. I am going to feel like half a person until I fly home to Boston to bring her back here.

HotHubby is pretty much feeling better, but a little sore. I wasn’t sure how much more of the pain-induced grouchyness that I could take. He’s a keeper, but apparently really difficult when under the weather. What hubby isn’t I guess?

He is calling to make the appointment for the snip-snip that will be done before I bring another little soul into the world. It’s either he gets it done by a licensed physician or I get it done after hours at Pet Smart, or drunk on the kitchen table. We are going on a family cruise in a year, I am not going to be pregnant for another cruise. I was 22weeks preggo with FireCracker on our honeymoon, I got so sick at our day at sea and we didn’t have SuperGlue with us. I can’t imagine being pregnant with #5 on a cruise while feeling insanely pukey.

Speaking of the cruise and my weight loss goals, I picked up an elliptical and a treadmill. The treadmill still hasn’t made it into our condo, HotHubby and I carried the elliptical upstairs together and that thing was hea-vy! I am doing a few minutes here and there on the elliptical, I have had to slowly build up my knee muscles as I’ve had two knee surgeries and my left knee area muscles aren’t all that strong. SuperGlue is LOVING the elliptical and has been working out everyday. She rocks!

We got our Staples Business Rewards check over the weekend and max’d out our quarterly rewards, getting the full $100 check. I took the girls and bought them some paints yesterday which we used today after I got back from my meeting and have been working on explaining the color wheel to SuperGlue – obviously FireCracker (newly 2) is too young to do much more than mix the paints. They were stoked and we turned two of HotHubby’s “Good Geek” shirts into painting smocks. I was very happy about not having to fork out money for smocks that are only going to get gross. I will have to take a picture of it tomorrow. I have made a resolution to take more pictures of the kids and have prints made.

Things are going well on the Geek front. The fact HotHubby is feeling better has made the gray cloud over my life go away. It was really hard to do more around the house while be pregnant with #4 at this altitude. Over the weekend I actually sat down for a full hour just to catch my breath and get my blood pressure up (yes, I am aware that it sounds backwards). I have been monitoring it and it fluctuates between 110-90 ish over 60-40 ish. I got the low blood pressure from my Dad and have been watching in every few days. I’d definitely take the low bp from my Dad over the high bp which I luckily did not get from my Mum.

Has anyone heard of metformin/glucophage making ones average blood sugar go up?

1035pm. What a fab day.

// December 3rd, 2005 // No Comments » // Health, John, Julie, Kat, Life, London, Rachel

Got SuperGlue off to school and spent the day with LittleMan and FireCracker, alternating between playing and working. I picked SuperGlue up a little early from school, well I always get there early so I can hang out for a bit and avoid having to stand in the long pick-up line (the babies always end up crying by the time I get to the front of the line).

After school I took the kids to Barnes and Nobles and the girls each got to buy a book and I got a Low Carb Cookbook for myself. Tonight the girls and I made beef and brocolli from scratch and ate dinner together with LittleMan (well, he watched). HotHubby has been with customers all day at is still not home at nearly 11pm at night (on Fort Carson, I think).

Put the kids to bed, exercised for 45 minutes, did the laundry and dishes, cleaned the house and am now sitting down with a glass of water to relish in my accomplishment. I’ve been having a hard time squeezing in exercise and balancing work with the kids, HotHubby and the house, but I really think I am starting to get there. Now I just have to get caught up on billing *groan*.

Sweet dreams everyone.