Tuesday, November 13, 2007

After pics

Here are the after pics LOL Had to take some new this morning

Fixing up the house

We have decided to fix the house up and rearrange our rooms a bit to accomodate our large family. I have no idea when we'll be adding on to the house, so we are making do with what we have. We should've done this a long time ago.

Our current living room used to be our garage. This room will soon be the kids room. We need another bed, one of my kids is always sleeping on the floor (they fight over who gets to sleep in the sleeping bag LOL). I can't even walk in their bedroom. In turn, their bedroom will be our dining room. Because it's a small room, it makes sense to just put our dining room table and chairs in there. With that, our current dining room will be our living room.

My brother and hubby painted the dining room and pretty light sage green, called Fishnet. It's so pretty!!! My kitchen cabinets are now white. A few years ago, I painted them blue and then sponged white on them. I got tired of that.

We are also getting vinyl flooring that looks like hardwood. We have hardwood now and it's just destroyed. I can never get it clean enough. It's terrible. Here are some before and afters of the kitchen and dining room :)

Ok, I'll have to take some after pics today as I can't find the one of the paint that I have.

Still Hanging On...

We are still hanging in there. Allie is still being schooled at home, her proteins keep fluctuating between 3+ and 1+. We had some hope though, at her last dr appt she only had a trace of protein in her urine, so we were hoping to wean her off the prednisone, but alas, they were at 3+ by the next day. All of the children have some type of ailment or another, whether it be runny nose, or a cough, or a sore throat, but by the grace of God, Allie has not been sick. He really is surrounding her with love and protection :)

Krista is now walking!! She started walking about a week and a half ago. Her 1st birthday is November 28th, she is my earliest walker yet :) We call her FrankenBaby :)

Everyone else is doing good. I'm finished with the podiatrist. I had a small plantars wart that only required two treatments and they didn't even hurt, surprisingly. I'm also on 20mg of Lexapro and wow, what a difference I feel. The dr also gave me something to help me sleep, Trazadone, because I was waking several times a night and it was really affecting how I function during the day. I'll only take it on the weekends, as it can make you still sleepy for a while after you wake...but it was nice to be able to only wake up once. Now, here are some pictures for your enjoyment :)

Sunday, October 14, 2007

We have a diagnosis

We finally have a diagnosis for Allie. She was in the hospital 2 weeks ago for 3 days of high doses of IV steroids. Her urine proteins went to 4+, and found out after her lab work her albumin and blood protein levels went down. She was retaining fluid, so was fluid restriction and lasix again. My baby is just going through so much. She also had a kidney biopsy.

I got a call from the doc last Tuesday. She has Focal Segmental Glomulerosclerosis (FSGS). Basically, there is alot of scar tissue on the filters of her kidneys, which is preventing them from working properly. Up until now, she has had little to no response to her meds. The dr wants her off of cytoxan and is putting her on prograf, but the insurance will not pay for it unless I get it directly from them through the mail. It's a very expensive med.

I have to call the dr on Monday because they were supposed to have called them on friday, but as of yesterday, the insurance co didn't have anything in their system. It's a pain.

Eventually she'll need a kidney. RIght now her kidney function is good...and the good thing about kidney transplants is you can get one from a living donor. There is no waiting on long lists for someone to pass to receive the organ you need.

So, that's where we are now. I'm sad that we are dealing with this, but relieved to know what we are dealing with.

Monday, September 17, 2007

Gone Fishing

Off to the river again, yesterday, to go fishing. The family and I packed our vehicles and went to the beach. It's alot of work, as we have lots of gear, but it was so much fun!! Grandma, Grandpop and Uncle Mark ended up meeting us there, and Uncle Mark caught some fish he let the kids reel in.

Angelina caught a snapper all by herself. She casted out the line and caught the fish. She was so proud! I caught some snapper and a flounder myself! It was awesome! Of course, we threw our fish we caught back, flounder season was over last monday, so even if we wanted to, we couldn't keep him.

I look forward to going back and fishing again! It was so much fun!

Friday, September 07, 2007

First Day of School

The kids started school on Wed...they love it!! Allie totally loves the bumpy bus ride LOL. They were all decked out in their new clothes, sneakers and backpacks. Matt is in 3rd, Nina is in 2nd, Anna is in 1st and Allie is in Kindergarten. So far we are off to a great start :)

Not responding to the meds

We ended up in the ER at ST Peters Hospital on Labor day evening. Allie was very puffy, her belly was very distended and hard to the touch. She had a hard time getting up when she sat down and her breathing was labored. We called the doc and he wanted us there right away. Her belly was full of fluid. Up until this point she was urinating regularly, but that day, she didn't go that often. Paying careful attention to when she goes and what she does, I was concerned because she hadn't had a bowel movement in a couple days too.

They did labs, urinalysis and xrays. Her lungs were clear...no fluid (hooray), but her belly was full of fluid. So, they gave her lasix via her iv and she's been on it every since. The dr did increase her dosage as she only urinates 3 times within a 24 hr period. I'm very worried about my girl. In addition to the prednisone and lasix, she is now on a blood pressure med that is known to help protein the urine to go down. We had her appt today, and the protein levels in her blood are going up, which is good, but the levels in her urine went up also. The er labs showed her levels to be at 4 (up from 2 a week prior) and today, they were at 4.5, definitely a step in the wrong direction. We will be going for bloodwork on Monday and talking via phone on Tuesday. It looks like the next step is a kidney biopsy. The dr said that she's either steroid resistant (meaning she does not respond to this type of treatment, and those children are hard to treat) or she has what's called Focal Segmental Glomerulosclerosis. Here is info about that:

So, that's where we are right now. I'd so appreciate any and all prayers you have to offer. Here are some pics of my girl!!

What a ride!!

We are embarking on a long journey. It began mid-July, when the girls had their well visit. They all checked out great, the normal make sure they exercise and watch what they eat. The next day we make a trip for their annual blood work that checks cholesterol. No biggie.

We get a call a few days later from the ped. telling us that Allie's cholesterol is 446, that we need to take her back to the lab and have her fast. The results were almost as stunning as the first. Her cholesterol was still in the 400's, and they found blood and protein in her urine. Immediately, the ped wanted us to get in with a nephrologist, she was really worried about her kidneys.

We get an appt for the following week...we go to Freehold (Centra State Medical Center)...about a half an hour drive with no traffic. Her dr is the chief pediatric nephrologist for St Peters University Hospital, so he's the best in NJ. She was diagnosed with Nephrotic Syndrome. Every day here eyes were really puffy when waking, and we thought she had allergies. Turns out that is a symptom of this disease.

In a nutshell, the filter in her kidneys are not working properly, causing blood and protein to spill into her urine, instead of staying in the body where they belong. This is causing water to be retained in tissues, her liver to release some kind of enzymes that cause the cholesterol to go up. At our first visit, her levels of protein were at 3.

The treatment consists of 3 months of prednisone...6 weeks to see if it works, the next 6 weeks slowly coming off of it. At our 2nd visit, 2 weeks later, her protein levels were down to 2. A step in the right direction, just not as fast as the dr wanted. 60% of kids with this disease respond to treatment within the first 2 weeks, 30% by 4 weeks, 5% by 6 weeks.

Sunday, July 15, 2007

Yet, more pics

Here are some more :) Krista modeling her new diaper covers :)

More pictures

Here are some more pictures from the new camera :)

New Camera

Bob got me a new digital camera for my birthday from the kids. Our sony was going on 9 years old and was only 2.1 megapixels...it didn't take great pictures, but it did the job. Anyway, the new camera is a Nikon cool pix, 6 megapixels and is very compact. I love it! The pictures are just so clear and fantastic, and the videos I can take with the camera...WOW!

So, here are some pictures of the family that we took with the wonderful new camera.

Redondo Twirly Skirts

I can finally sew with a pattern! Tia bought me the pattern for the Redondo skirt, which is a super twirly girly skirt. I've been admiring the ones the other mamas have made and I knew my girls would love them! It took me about a month before getting the courage to trace, cut and sew.

I made Alaina hers first. I used a butterly fabric with a coordinating flower fabric. I just sewed this one...but Anna's and Angelina's were serged together, which gives it a more professional look, and it doesn't fall apart at the seams :) Enjoy the pics!

Sunday, July 01, 2007

Matt received an award

All the kids are promoted to the next grade. Matt had an end of the year party as well as an awards ceremony a couple of days before the last day of school. We are so proud of him. He did so well in 2nd grade is really excited about going into 3rd grade. Here are some pictures of Matt and his award and him with his best friend Eddie :)

Krista's New outfit

I've found a new hobby...like I need another one, but it just blends in with what I already love to do. I've discovered the art of dying yarn. It's so much fun seeing the colors I can create. I start out with either white or natural color wool and just use food coloring to dye it. The process is pretty easy too.

So, I dyed some yarn in the middle of last week. It came out beautiful bright shades of pink, orange and yellow, perfect for the summer. I also dyed a smaller coordinate skein in the pink that's in the yarn. Well, I was hanging out laundry and got to a shirt we picked up for Krista at a garage sale last weekend and discovered the yarn I just dyed would match perfectly!!! So, I knit her up a skirtie to wear over her cloth fitted diapers (diapers that need a cover). There is a panty style soaker under the skirt. It came out adorable. Here are some pics of the yarn cooking, yarn with the shirt and her wearing the outfit.

I also wanted to mention that everyone's first thought is "wool is just so hot". Actually, wool that's been handknit with breathes and is not hot at all. It's super absorbant and is not heavy like the wool sweaters that people automatically think of. Enjoy the pictures :)

Time is flying

Krista is 7 months old already! I can't believe how fast the time is flying by. Within the past week, she started crawling (regular crawling instead of the "commando army crawl"), pulling herself up to standing and she's coasting on the furniture a little bit. She's also enjoying different foods. She loves her veggies and fruit, I gave her some of our peas and carrots one night and she LOVED them. She also had yogurt yesterday and couldn't get enough.

The kids are enjoying their summer vacation. At night, we try to get to the river beach with my girlfriend and her kids. They all have so much fun playing together!! Here are some pictures :) Krista's 7 mos pics, Anna on the last day of school and Matt & Nina on field day.