Headed Home Again :)

Madison's surgery went very well. She's such a sturdy little girl, I'm not surprised she's handled it so great. She did swell up a lot after the surgery, which I wasn't prepared for, and the neurosurgeon said was more than typical, maybe a reaction of some sort. But once she was off IV fluids and able to be up a moving around a bit, the swelling went down quickly. She went from her eyes being swollen shut yesterday morning, to almost normal by mid-afternoon. She looks perfect this morning and is her usual cooing and smiling self.

The shunt is not too visible, which makes me happy. I'll get some pictures up later. A small bump on the top of her head where the reservoir is, but the valve is so small you can barely feel it under the skin. Once her hair grows in, you won't notice it at all.

We are going home this morning as soon as the paper work comes through. Thank you all for your prayers.

Gearing Up

Madison went in for her check-up this week. She now weighs 18lbs 14oz. She's 26 1/2 inches long, and in the 95th-97th percentiles for her age. Big girl! Her head circumference has also gone up quite a bit, even from her visit in Portland a couple of weeks ago. It's off the chart now, so I am reassured that the shunt is the right thing to do at this point.

Her surgery is scheduled for next Thursday, and we will drive up on Tuesday night since she has a pre-op on Wednesday morning. She should only be in the hospital for 2 days. We need prayers that everything goes smoothly.

As far as her development, she is doing wonderful. She sits up well for her age, but topples quickly. She's rolling over from tummy to back, and *almost the other way. She's so chunky I'm surprised at how agile she is. She grabs her toes and rolls back and forth. She is moving her toes more than she used to, which is really encouraging. I will try and get a new picture of her up soon.

It's been relatively quiet here this week, since my parents took Seth and Ethan camping. They've been gone since Monday, and I will drive over today and help get everything home. What a blessing my parents are .....

Kirsten's graduation went well, and we had a nice dinner here to celebrate. She's now working at Camp Harlow for the summer, so we won't see her much.

Well, Hannah and Abigail just woke up, so I must go.....

Some News, Good and Bad....

Madison is going to need a shunt. I was dreading the news, even though I wasn't surprised. We went to the Spina Bifida Clinic last week, and her head growth has gone up from the 75th to the 95th percentile rank. Her weight has as well, so the pediatrician didn't know for sure what would happen. So, we drove to Portland yesterday for her MRI and follow-up with the neurosurgeon. Her ventricles are getting bigger. Not causing any problems for her, but it is what seems to be causing her head growth.

I will call today to schedule the surgery, and will probably have it done at the end of the month. They do the surgery at Doernbecher's Hospital in Portland, so I will have to be away from the rest of the family for a few days. In the long run, this is nothing, I know, but for now, it's not what we wanted. I was hoping she would be in the 10-15% of spina bifida kids that don't need shunts. The neuro said that he places enough tubing to allow full growth, and if the shunt functions normally, and she doesn't have any problems with infection, etc., then she won't need a revision ever. Statistically, revisions are common, and most people have 7 in a lifetime. Prayers needed that this is the only surgery she will ever need for this.

Some GOOD news!! Kirsten is graduating from Western Oregon University on the 13th! Yay!!! We will be having a celebration here at our home after her grad ceremony. I'm so proud of her. :) She has worked hard the last four years, and I pray the Lord uses her in her work environment. She's going to be a teacher, and I know she will be a wonderful one. She has worked at Camp Harlow every year between her school sessions, and thoroughly enjoys those little people. She has a heart for it.

Other good news about Madison.... Her physical therapist and her SB pediatrician have upgraded her leg strength. She is pointing her foot a bit on the right side, and I think I've noted some on the left as well. Her hamstrings are working also, which wasn't for sure on her last exam. She is weak in the gluteal area, but does have some function there. They have no doubts she'll walk, though she will need some braces for positioning. We are still working on stretching her feet, hips and neck. She's a litte tight on one side and prefers to look to the right. But she is meeting all her developmental milestones on target, or a bit ahead. I thought she was lagging a bit a month ago, so it's very encouraging.

Thank again for all the prayers. Sorry I don't update here more often, but we are a BUSY household, and it has been a very busy Spring. Love to you all! Lord be with you.....

Vacation Time...

Here I sit in beautiful Hawaii. We are taking a couple of weeks on Maui to relax. Well, to a degree. Tim has been working here for 3 weeks, and is basically ready to go home. He will finish his pool remodel today though, and hopefully be willing to relax for a few days before he heads back. Myself, I'm staying the full 2 weeks I scheduled, along with Linda, Seth, Ethan and Madison. As hard as it is to leave young ones, I left Hannah and Abigail with Kirsten and my sister Karen. I'm so grateful they were willing to take on the task. It isn't an easy one to watch 2 toddlers that are 3 and 21 months. They are beyond busy, and quite a handful. :) But they are sweet and wonderful, and a joy at the same time. I left home 2 days ago, and I miss them, but....

Anyway, I had a few minutes while Linda is swimming in the pool with the boys, Tim is working, and Madison is laying quietly on my bed, so I thought I would update this blog, which is way past due.

Madison is doing great, and I will try and get a few new pictures up on the site. I'm not terribly computer savvy, so it's a chore to do those things. She is growing fast, and smiles and coo's and giggles a bit. At her last clinic appt (where we see the physical therapist and pediatrician that coordinates her overall care), they said she was pretty much on track with her typical milestones. But, she needs more tummy time, and I've been working on that. She does pick her head up and look around well when she's on her tummy, but she's not pushing up yet with her arms. Her range of movement is good with her feet and hips, but I need to continue to do the stretching exercises that were recommended. That will be a forever thing I'm sure.

She's very sweet and smiley, and so chubby! It looks like a chore to push her cheeks aside to smile at me.

We are scheduled to see the clinic practitioners when we get back, then get a kidney ultrasound to check on the swelling she had in one kidney when she was born. Then we head to Portland for another MRI and follow-up with the neurosurgeon. As this approaches, I worry. Her soft-spot seems to bulge some days, I notice her scalp veins more, and every cry makes me wonder if she's in pain. (all the signs of hydrocephalus) Overall, she seems perfectly normal, but I still anticipate needing a shunt at some point. Whether that happens or not is in the Lord's hands, but I still worry.

So, once again, I thank all of you who are following our progress and praying for this precious little girl. She is a joy, even with the challenges and unknown's.

Apples in my Bed?

So, I thought I would update a bit on what life is like around here right now. Madison is doing good. I'll try and get some new pictures up today. She goes in soon for her 2 month check up, and has an appt later in the month with a urologist. She is smiling and cooing and kicking and being an overall joy. The kids all adore her, even Abigail is kissing on her now. (and sitting on her, pinching, etc.)

But, as is usual with an almost 3yo, 18mo old, and newborn, there are few moments in a day when *something isn't happening. I did find an apple in my bed not too long ago. It had been nibbled by a small child obviously, and left without regard. I have also had a battle with Sharpie markings on the TV, walls, and furniture. This follows on the heels of dry erase markers on the walls and canning equipment upstairs. I have to say, I prefer the Sharpie. It comes off fairly easy with a soak in sunscreen, and a scrub with Mr. Clean's magic eraser. The dry erase is tougher by far to remove. (just a tip for all you parents and grandparents out there) I find it's very hard to be on top of them at every moment right now. They just do have some "free time" so to speak, like it or not. But we are learning together how to keep things running like a household. Seth and Ethan are tremendous helpers (and tattlers) and it does help to stem the chaos. They also help with a lot of the chores that are needed on a daily basis. Wonderful boys....

I have to say Hannah is the main culprit and challenge right now. Abby doesn't open doors yet, so her ventures are limited by what Hannah is willing help her get into. But, they are so fun and sweet, it's hard to get too upset with them. (I still manage though) The back yard is a safe place for them to play right now, just waiting for the weather to get a bit warmer to enjoy that respite. They need a few more outdoor toys so they will quit emptying my flower pots, but it's still great for them to get outside and burn off some energy when possible.

The boys have been staying on task with their schoolwork, thanks to my very wonderful mother. We've had some downtime this week due to coughs and colds, but doing great for the most part. They are still doing piano, and practice is a challenge, but we are working on it.

Tim is still doing most of the cooking (what a dear) and he has stayed fairly busy with work (thank the Lord for that). I can't express what a blessing he is to me. He thoroughly enjoys hanging around with all these little ones, and hates to see them go off to bed at night. (I honestly can't say the same for myself, but I'm ready for bed when they are...)

Kirsten is graduating from college soon, and plans on staying with us for a while. I am looking forward to that. She will be working at Camp Harlow for the summer, so we will only see her on the weekends, but it's still nice to have her around. Linda is coming here on a regular basis to help with the children and do some housework. She plays well with the kids, and seems to be on a fort-building quest with them. They love having her here and miss her when she doesn't come out for the day. I too love having her help and company, and truly appreciate her willingness to spend her time with us.

Well, there are my thoughts for today. I pray you are all well. We still need your prayers on an ongoing basis. So much is unknown, but we are trusting the Lord to lead us through. (and He is....)