My Beautiful Smile Maker

Here's a video of Madison walking across the grass in our yard.  She is now walking on gravel and grass, and seems to enjoy the challenge!  Taking her camping really helped with that.  She walked all over our campsite (and fell a lot).  She isn't as afraid of falling now though.  haha!  She has also started walking around the house without her braces on.  I'm so impressed with this little smile-maker.  :)

Another mom posted today that she hopes she never tires of watching her little miracle walk.  I know I never will.  She's a reminder every day of the grace of God in our lives...

Maddie singing "Spiderman."  :)

Here is Madison walking around our flower bed last Thursday.  May 19th.  She is now 28 months old.  Since then she has been walking around the house almost exclusively, although she is crawling or using her walker outside on uneven ground.  I took this video with my phone so it is a bit fuzzy.

I just love the sound of her little feet walking around the house!  Her shoes squeak a little, and I can hear her making her way through the kitchen, down the hall, etc.  She is so proud of this new skill!  She just walks back and forth all day long.  :)

Walking!

So yesterday, Madison decided she can walk around the house without my finger! Yay!! She's 28 months now, and it's been such slow progress! When you are used to a milestone being reached and passed within a few days with typical kids, it can be very frustrating to wait 6 months from first steps to actual independent walking. But what a blessing it is to see. :)

Beautiful Days, and New Mile Stones....

Today was our first baseball game(s) of the season. I so much appreciated the glimpse of warmth and sunshine that accompanied them. Ethan and Seth were at separate fields, so I took Abigail and Madison with me to Ethan's, and my parents took Seth and Hannah to his. This year is different. I don't have to push a stroller full of toddlers to the field, and although Abigail is still pushing her boundaries, we got over the first clash of wills with her, and I was able to actually *watch the game!

Another difference.... Madison is older, and not quite walking. I almost brought her walker with us, but left it because she generally abandons it anyway, and it's just another item to carry around for me. But tonight I think she noticed that she is different. She was playing with Abby and a group of other girls, all around ages 3-4. Older than Maddie, but the same ages as her siblings, so she thinks she should fit right in. But she couldn't keep up with them, and although she played fine throughout the game, she wanted to have me walk her around instead of crawl. Should have brought the walker. She is so close to independent walking, but on dirt and grass, she isn't close.

When we got home, she walked across the kitchen without being coaxed! I was shocked! She walks a little here and there, along side the couch, or when someone is working with her. But this is a first! I'm so happy for her, yet a bit sad that she may have felt left out at the ball field. I'm sure it's the first of many instances like this that she will face in her life. I love that she is feeling more motivated to walk.

But with every mile stone reached, I feel a little sadness for how hard it is for her. I know other parents with challenged kids can understand....

Another Spring Coming...

So another Spring is around the corner, and I can't believe how fast the last few years have gone. The last 4 years have really been a whirlwind, since having 3 little girls in 3 years has kept me very busy. Not only busy, but really feeling most of the time like I'm running to catch up, and not accomplishing most of what seems important. I keep looking forward to the day when I'm leading and directing instead of feeling like I'm just barely keeping up. It has been an emotional roller coaster since Madison was born, and I've gone from feeling like I *can do it, to feeling like I'm a complete failure.

The training and loving of toddlers is a tasking adventure, even when you have one. I've had three, (this time around with toddlers) and it seems to take forever to move from toddler to preschooler. Hannah is finally becoming the sweet and (sometimes) obedient little girl I've been praying she would be. Abigail is clinging to toddlerhood in some areas, but also blossoming into a sweet and loving little girl. Madison is a whole new world for me, and I think I've mentally kept her a baby. She is so smart though, and wanting to do everything her sisters are doing. She loves to color and draw with them, and follows them around and joins in their play.

Seth and Ethan are fast approaching little men. I worry about Seth sometimes, as he is such a young "man" most of the time. But, he loves to play with his siblings and isn't afraid to love and kiss on them. He wants me to adopt more children. We need a girl (he says) in between Ethan and Hannah to help play with the girls. (not happening that *I know of) Ethan is content to play either toddler games, or hang with his brother playing board games or whatever.

Having a large family has so many dynamics. I never considered how many directions your children can go at once. How do I pull it all together in a cohesive manner? Most days I don't. There are times when everyone is needing me at once, and times when they are all building forts or playing with Legos together. Times when Seth is picking on some younger sibling or other, and all the kids are screaming. (sometimes in joy, sometimes in anger)

At times I do get a glimpse of what life will be like in a little more time. A little more organized, a little less pressured.

I have hope, and faith that that growing up in this family will be a blessing. :)

The Best Thanksgiving Ever!

Madison surprised us all today by walking across our dining room several times. She is now 22 1/2 months, and has taken a few steps here and there, but always has to be "tricked" into it. She has now realized that she *can do it! It is so exciting, and I keep thanking the Lord over and over as I consider all that she has accomplished in her two short years.

It was a very precious day, and all of our children were here to witness it, as well as other close family members. I knew she was getting close, but didn't realize how ready she actually was. Just another reminder that our children are always a step ahead of us. :)

Just Pondering....

As many of you know, this October is Spina Bifida Awareness Month. While Madison is closing in on two years, I never gave much thought to how the world in general views these wonderful children that are born with this affliction. Madison is just so much like any other child, its hard to imagine that someone else could look at her (or any of those on the SB kids blog) and say "I wouldn't want a child like that." It is ultimately heartbreaking.

I never thought about the upwards of 50% of these children that are aborted after their parents find out about their SB. It saddens me beyond measure that families would discard a person simply because of some challenges. Most wouldn't consider it if their baby was born premature, they would fight for that baby like nothing else. Prematurity can cause as many or more long term issues as SB. If their newborn baby were diagnosed with cancer, would they just let them die? If their 10 year old were in a car accident and ended up in a wheelchair, would they wish they hadn't had them? Some would say these are extreme comparisons, but not in my mind. I have a child that was diagnosed when she was 17 weeks old. Not before she was a child. Just before she was born.

I don't regret for a moment having her, and I know she has blessed our family in more ways than I can even notice on a daily basis. She also blesses everyone we meet. She is beautiful and funny and smart. She lights up the room with her smile and her laughter. She is also very loud! You cannot ignore her. :)

I have seven children, and Madison is the youngest. I have grown up with a fear of having a special needs child. I always worried that God knew I had a weakness there, and would give me a baby like Madison. I can't say how thankful I am that He did.

First Steps!!

After a great day at physical therapy, Madison was toddling around the kitchen with Linda, and took 3 separate independent steps! Then a few minutes later, she took 2 1/2 at one time!!

I'm so excited, I'm posting it everywhere I can think of... :)

She is now 20 months.

Getting Closer!

So we have been having physical therapy every week, and working on trunk strength, balancing, walking with one hand, or with hip support and no hands. Madison is doing very well, but balks at holding her own with walking. She just leans hard on whoever is working with her. If I leave her standing in the hall, she will use the wall and sidestep down the hall, (if she's in a cooperative mood) or just drop to her knees and start crawling.

But she is making improvements, and her therapist is pleased with her progress. Sometimes it seems so slow! But I know that there are a lot of factors involved with her walking that most kids don't have to worry about. It is a very conscious effort for her to keep her feet aligned, and her hips in control. She looks a bit squirrely when she walks, but her therapist said yesterday that it has tightened up a lot. Very encouraging.

Physical Therapy Update

Madison is doing really well with her walking. (she's now 18 months old) However, she has reached a point where she is happier to crawl than try and walk around. So, she has abandoned her walker, and yells when we try to get her to walk. Bummer!

Our therapist said this is pretty typical with late walkers. So, we are now going to really pressure her to walk more, and make her use the walker instead of crawling around the house and yard. Pray for us! She is very independent and likes to YELL! So, it will be a challenge. :)

We are stepping up the therapy appointments as well for a bit to try and get her over this hump. She should be walking independently relatively soon! I'm excited for it, but I also realize its going to take a lot of work to get there.

Another positive, she is not needing as much bracing, so we are leaving off the front portion of her braces, and are loosening the straps around her calves. Her next braces will be a bit lower, with the goal of going as low as possible to give her the support she needs. She's keeping her feet forward better all the time, and her therapist is very happy with her improvement there.

Not a lot of news otherwise. We are enjoying the summer weather, which finally showed up. Busy with swimming lessons and summer schooling. But fitting lots of play time and outings in when we can.

It's been a while....

Well, it's been quite awhile since my last post. Life is busy, what can I say? I envy those who write wonderful blogs that inspire and captivate. I struggle just to keep it current enough to keep family and friends updated on how we are doing. :)

So, I'll let you all know what is new!

Kirsten and Linda are working at Camp Harlow this summer. I will miss having them here, but I'm glad for their opportunity to work with kids, and prayerfully hope that they will grow spiritually in their efforts.

Seth and Ethan are finishing up with baseball season. This is the first year we've attempted this with all the toddlers here, but it's gone pretty well. We've had practice or games 5 nights a week, so I'm looking forward to some regular family time and regular meals instead of sandwiches most nights. I think everyone needs a break from PB&J.

Hannah is getting older, and finally acting it! She turned 4 in April, and I am finally able to see her acting like a little girl instead of a toddler. She has born the brunt of me being very busy with other babies, and with her personality, would have benefited from more diligence on my part in training her. But, we are getting there!

Abigail is turning into a beautiful little girl, and talking up a storm. I keep trying to start potty training, but she has no interest yet. However, she's getting better at being compliant, and is enjoying Madison getting older, and joining in their play.

Madison is doing wonderful! She is 18 months now, and walks (with a walker) all over the place. We take the walker to the ball field, and she is hard to keep up with. Her therapist is very pleased with her progress and has told me that Madison will walk soon (by the end of this year, probably) without assistance. She will need braces of some kind, most likely forever, but that is so small a need for her. She has AFO's right now, and she wears them about 50% of the time. She also cruises and uses her walker without them, but she will need to braces to really get her balance for walking. She is walking along the wall, or holding one hand, (a new skill) and I see improvement almost daily with her balance and confidence.

I was feeling like she had plateaued with her walking for a bit, but realized that she was also fine-tuning some of her other skills. Getting down from cruising, crawling faster, just gaining agility all over. I'm very excited for her improvement.

Her urologist is pleased with her kidney health, although we will be looking at surgery around age 5 to attain social continence. I'm mainly concerned with overall health, so I will worry about one thing at a time. Catheterizing is very common with spina bifida to keep the kidneys from failing, so I'm happy that we don't have to worry about that with her.

I pray you are all well, and thank you for your continued support and prayers. :)

We Have Braces!

I'm surprised at how excited I was to get her braces. Even more surprising is that she really seems to LIKE them! I was afraid she would hate them, but she wears them, and crawls all over with them without complaining. They did take some getting used to, but within 2 days, she started looking excited when we put her braces on.

She is cruising with them now, and turning to grab your hand, walking well forward and side to side (while holding hands of course). She has a way to go to gain full balance, but I see improvement every day with her foot and stepping control.

I put up a new picture of her in her braces at her therapy session. Her PT really was impressed with how she's doing. Moving forward consistently, and really wanting to walk. Very encouraging. :)

I also realize how much she's growing up. She isn't just a baby anymore, and having her up on her feet makes me realize that she is heading into the toddler age quickly. She's jabbering and talking constantly (or yelling) and I think she'll talk earlier than the other girls have. She wants to be a part of the group already.

She is quite demanding, and I'm afraid a bit spoiled. I have to remind myself not to give into her too much. But, when I have a baby yelling, and toddlers running me a bit ragged at times, I do tend to give in to acquire a moment of peace.

Thanks for reading, and for your continued prayers....

Still Waiting....

We are still waiting for Maddie's braces to be fitted. Appt in 2 weeks. In the meantime, though she is pulling up on certain pieces of furniture, and cruising a little bit. She is getting much more stable on her little feet, but not very balanced.

I am quite excited to see this new milestone achieved. She is such a joy and a trooper, and I know she is dying to run around the house with the other girls.

I still don't know how long it will take to get her walking independently. That's up to her, but I know she is motivated. :) She will probably start with a walker of some kind to help her learn how to balance. Balance is tough for her, I assume because she has limited sensation in her feet. She doesn't seem to know where they are going to land when we are helping her cruise around. It is improving, however.

Thank you all for reading, and for your prayers.....

New Pictures

I finally put together a few new pictures. I thought I had more to share, but I need to upload more to photobucket before I can put them in the slide show.

As far as new news goes, Madison was casted for her braces (AFO's) last Tuesday. We should be getting them in 2-3 weeks. I'm excited to see how she fairs with them. She's not quite pulling up to stand yet, and I think she will benefit the most when she is able to do that. We'll just have to wait and see how best to use them.

She really hated being casted, and yelled (very loudly) the whole time, and then didn't want to be messed with at all afterward, so her PT appt. wasn't the most beneficial. Can't really blame her though. She just wanted Mommy after all that trauma. :)

We are going to PT every 2 weeks, and her therapist is very pleased with her development. I have to say, I am too. She's a trooper, and is very motivated to get around. I see her crawling around after her sisters, and wanting to get up on her feet. (camel-stance)

I will post some pictures of the braces when we get them.

Birthday Girl

Maddie is one year in a couple of hours, and I am in tears and joyful at the same time remembering this last year. It's been a whirlwind of challenges and fears, and amazing victories.

I am terrible at getting the camera out, but I promise to get some new pictures up soon of all the kids. Madison is really wanting to be part of the daily celebration in the mornings, and she is very vocal about it, if not able to follow fast enough to keep up with the running and dancing. The girls are both including her now in their play, and they spend a good bit of time playing "kitchen" in the girls' playroom, as well as "reading" books to each other. I'm excited to see how their friendships develop over the years coming up.

Seth and Ethan are wonderful brothers, and never tire of playing with the babies, even though they get frustrated at the occasional sabotage of their personal things or projects. I'm looking forward to some good outdoor weather so they can ride bikes and Madison can get a feel for the dirt. She loves textures and exploring, and crawls all over the house now.

Kirsten is still working on getting sub jobs for teaching. She has her second job this week, and is excited about it. Her first day subbing went really well, so I'm glad she's getting her feet under her. I pray she will be a blessing to the school system and reach many children for the Lord.

Linda is working for Tim and staying busy with her social life (along with Kirsten). I'm enjoying spending time with these young ladies and hope I can encourage growth where it's needed, and encouragement where it's due.

Parenting so many different ages has it's challenges, and I often fear I'm taking advantage of some, and neglecting others, but I pray at the end of the day/week it all balances out.

I also pray that I get back into a prayer and study routine for my own growth and refreshment in Christ, as this has gotten neglected and certainly adds to my down times. But the Lord is faithful, and I am always aware of His presence here.

I am extremely thankful for all those who pray for us and think of us and pass on the occasional encouragement. It really means so much!

Thank you.....

Another Milestone

Madison got up on her feet today! I really didn't think she would do this before she had some braces on her little feet. She has been standing on "tall knees" since soon after crawling, but I didn't think she was stable enough to get up on her feet. She was trying to pull up on a pillow this morning, and had both of her feet under her, and her legs straight, in a camel-stance. :)

I'm so excited for her! I just love that she is so motivated. I'm pretty sure she will be pulling up to stand next to furniture soon, with or without the braces. (we are still waiting for the appt to get this started)

Anyway, just had to share....

She will be 1 year old on January 10th. Whenever I read others' blogs, I wonder how old their children are, and scroll through trying to find out when they were born. I will try to mention her age more often.

She's CRAWLING!!!!!

Well, after scooting backwards for several weeks now, Maddie has finally figured out how to crawl forward! We have it on video and will try and get a decent copy on the blog. I'm relying on my daughters to facilitate this since I'm having computer troubles.

So, it was a very exciting night here, and we'll have great news for the ped and physical therapist next week at our clinic visit.

Yay!!!!!!!!!!!

Wonderful News!

Madison's physical therapist was very pleased with her progress this week. She's going to PT twice a month right now, and her overall strength is very good. She is a bit weak in the inner thighs, buttocks, and ankles, but all of these muscle groups are stronger than we anticipated. It's very exciting to me. :)

She isn't really interested in getting around too much. She sits, and plays, talks, and yells like crazy. But I believe, even if she didn't have SB, she wouldn't be on the move yet. She's just very laid back physically. She can sit, get into the crawling position, roll over, and almost gets into the sitting position on her own. But, she rarely does these things unless someone is working with her. She crawls backwards when she tries, which is very typical of an early crawler. She turned 9 months on the 10th, so she's a bit delayed in crawling, but not much.

She is just a sweetheart though, and we love to see her smile and giggle and talk to us. She is very kissy and cuddly too. Hannah and Abigail are starting to really enjoy her as well.

I am going to try and get some new pictures of her up on the site. We are way behind on that due to camera troubles.

Home life in general is going well. The boys are busy with school, art class, piano, and playgroup activities. Hannah is taking some horseback riding lessons. (pretty low-keyed aimed at 3-4 year-olds) She LOVES this. Abby went with us today, and was able to ride the horse a bit as well, and just threw a FIT when she had to get down.

So, we are staying busy, and enjoying the Fall. We canned about 80 quarts of grape juice this last week. A first for me, but it was worth the effort. Very good juice, thank you Grandpa Dennis!!

Also, we saw the ophthalmologist last week, and Madison doesn't have ANY issues with her eyes. I'm so happy about that. With as many issues as SB kids can have, every one we DON'T have is a huge blessing.

Thank you all for your continued prayers and interest. I'll try and keep the blog updated as needed.

Catching up....

I realized after my last post that I never posted about Madison's shunt revision. We went into the ER on the 18th, and I posted at that time about my concerns. She did have a UTI, and broke her first tooth, followed quickly by another. The following week we took her in to see the neurosurgeon for a follow-up on the ER visit. I had figured by that time that her troubles were due to the UTI, teething, and possibly my imagination. However, her head circumference had gone up 1 1/2cm since her ER visit the week before (head growth should be about 1/2-1cm a month at this age), so he decided to do an MRI right then, and it showed definite enlargement of her ventricles. So, at 5pm we were admitted to OHSU. I was not prepared to stay 2 hours from home, my mother and young son Ethan were with us, and Tim was working out of town 1 hour away from home, and 3 hours from Portland.

So, my daughter (Linda, 21) stayed with the rest of the crew at home, and my dad brought me clothes and things, picked up my mom and Ethan at 10pm or so, and I stayed in Portland with Madison. She had to fast from about 3am since they were working her into the surgery schedule, but they didn't get her in until around 4:30pm. It was a long day, but she did quite well with the fasting. We hung out together and watched Baby Einstein a whole bunch. I posted a new video that I took with my phone. I took this just minutes before they wheeled her away for surgery. She's amazingly happy for fasting over 14 hours.

So, she recovered well, and has been making great strides in her development since then. She's bearing weight really well, and getting up on all fours to try and crawl. She scoots backwards instead of forwards, but seeing her reach these milestones is simply lovely. :)

My mother-in-law Carol passed away last week, and we have been mourning her, yet praising the Lord for his tender mercies. She's in a better place for sure. She was always loving and warm and a great blessing to our family. We will miss her....