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.

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!

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:
http://www.nephcure.org/Info_aboutfsgs.html

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.

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!

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.

Krista's New Swim Suit

I was involved in a "traveling" box swap a couple of months ago on a diaper sewing message board I belong to. The first person would fill a flat rate box full of stuff, mail it to the first person on the list, they would take out what they wanted, put more stuff in the box and mail it to the next person, and so on. It was awesome.

Anyway, I found this lycra PUL fabric (pul is a waterproof diaper fabric)...which would make a great swim diaper. I sent it to Tia because she said she would make a swim diaper for Krista. Well, her imagination took off, and she made this gorgeous, super cute swim suit for the baby :) She also made a surprise for me, a knitting needle roll. It's beautiful and now I have a place, other than a basket to store my needles in.

We Miss You Beau

We got Beau 2.5 years ago. We were dog sitting for my brother in law...He and his daughters were taking a trip to Florida, so we happily took Beau. When Mark came to pick him up, Beau didn't want to go, stuck his nose up in the air and went to lay down in the corner of the living room. We've had him ever since. Yeah, he was a pest at times, but we loved him. We took care of him. He wasn't very playful, after all, at that time, he was 16. I took him to the vet, and other than being an "old man", needing a good dental cleaning and having some arthritis in his hind legs, he was a healthy dog.

I took him to the vet this past January. His arthritis had gotten alot worse, and he started dry heaving. He was still pretty healthy though, for a dog his age. His health just started to deteriorate. His back legs started to give out frequently, causing him to fall down our 2 little steps we have on our side porch. Sometimes he couldn't get up the step into the kitchen, his legs would give out. The dry heaving got worse. His breathing when he came in from outside was horrible, it sounded as though he had emphysema. He couldn't see. The cataracts I'm sure had made him completely blind, as he bumped into everything. It was very painful to see.

Yet he was so loyal to us. He loved us as much as we loved him...I just know it. He was pesty at times, bugging us for food when we had dinner, refusing to eat his own. Being unable to see, he was always bumping into me as I was trying to cook dinner, not a good thing when I was carrying a hot pan or hot food. He was a very good dog, who loved being pet, hugged and kissed.

I talked with my husband about having him put to sleep. His quality of life was just so poor, but it seemed as though he would shut down and not want to talk about it, so I feel like this was a decision I had to make all on my own. The other night, I asked him if he had any objections to me calling the vet and making an appt. He was only worried about the cost, but wouldn't talk much.

Yesterday, it was a miserable, rainy day. The kids were very good though, they kept the fighting to a minimum, and actually played nice together. So, I called the vet in late morning and made our appt. I was very upset, but knew I had to do this for Beau. He just had to be hurting, after all, he would sporadically just cry in his sleep. It totally broke my heart.

Not long after I made the appt, the sky cleared and the sun came out. I took it as a sign from God that I was making the right decision for our beloved pet. I talked to the kids after lunch, and we shared stories, I answered their questions, and we shared lots of tears. I made Beau a meal he loved...hamburger! He ate two hamburgers and then some cheese quesadillas I made for supper.

We took him to the vet. Angelina, Anna, Allie and Alaina wanted to go. My mom came with us as well. I know there are people that would have a problem with children being present, but it's all a part of the cycle of life. I wasn't going to deny them wanting to be with him when he passed. It was a very peaceful process. I held him, the kids loved him and hugged him and we all cried as he took his last breath. I hope he knew how much we really loved him.

We are all taking it pretty hard. I'm very sad. I know in my head and heart that I made the right decision for him, but I still feel like this horrible person, who was trying to play God. My heart aches in a way it hasn't before. I feel like the weight of the world is sitting on my now. The kids are taking this very hard as well. They miss him terribly. We are going to get some flowers, a tree or something and plant a little garden in Beau's memory. He's my first pet that I had as a grown up, and he was our first and only family pet.

I know my hubby is hurting too, although he won't admit it. Every night we do a "circle time" with the kids, where we pray and then talk or do fun things. They will take turns reading a bible story, or we will play quiet games like question and answer. He didn't want to participate in our circle time last night, he "wasn't in the mood". I pray for my husband that he can come to terms with Beau's death. I think he loved Beau more than he wants to admit.

Anyway, here are some pictures that Matt took of Beau yesterday, and one I took of him and Beau together.