Appointments, Visitors, and Fun

I am behind on blogging, as usual, but I'm trying to be consistent ;).  Ok, not really, I just operate slightly behind, and thankfully it doesn't bother me too much.

A few weeks back we attended an event for the Tucson chapter of the Arizona Spina Bifida Association at a local gymnastics gym.  The kids had a LOT of fun.  I plan to get them on the wait list for future classes.  An OT leads frequent classes for kiddos with disabilities and is really great with the girls.  Conner has been wanting to take gymnastics too, so it works out great!

 Conner got to take his turn and have an appointment with a vision specialist.  He was pretty excited actually.  I had all the kiddos evaluated in Phoenix, just to make sure that not only their vision was fine, but also their tracking and the such, and Conner showed some gray areas where the doctor thought he may eventually need some vision therapy.  His eyes have a hard time converging when he's reading.  It's not major, but seems to be effecting his reading a bit.  I have noticed as the print has gotten smaller, he closes one eye when he reads, sometimes skips lines, and still reverses some letters. I took him to get evaluated again at a different place in Tucson an they decided that he would benefit from glasses to magnify his work whenever he is doing school work or watching TV.  He also is going to do 8 sessions of vision therapy.  He is super excited for his glasses and very happily wears them.

Madi's new neurologist wanted to do a sleep deprived EEG to see how she is doing and possibly switch up her medication since she's still having a decent amount of seizures, and her seizures are hard to stop.  He wanted me to give her about half the sleep she normally gets.  At first she thought staying up and watching movies with me sounded amazing, but she is my girl who loves her sleep, and the novelty wore off quickly.  She did it, though, and I was very proud of her! She did well during the EEG and had the nurses all giggling, of course.  The doctor said her patterns have remained the same.  She has a lot of mis-firings, most stemming from the left-hand side.  We discussed new medication for her and I told him my concerns with picking a new one.  She only has one functioning kidney, so it's very important to have her on something that will not cause any kidney damage.  She is also terrified of blood draws, so I wanted her on something that did not require frequent level checks.  We decided to try lamictal since it works well with focal seizures but also helps generalized seizures.  There is a risk she may have a rash/reaction, so we are taking our time and getting her up to the full dosage very slowly, over a span of 4 weeks.  At that time we will see how she is doing and hopefully slowly wean her off the Keppra.  The keppra makes her moody, so I am hoping the lamictal helps her there, though I'll take a moody girl with a happy kidney over anything that may harm her kidneys any day!  After the EEG I took her out to eat and she chose Panda Express since we do not usually eat there (gluten sensitivities) .  She was pretty excited!  I also got a coffee (because momma was sleep deprived too) and she convinced the barista to give her a cup of whip cream with chocolate on top.  This is a rare treat for her (due to her dairy sensitivities), plus they gave her a huge cup, so she was super excited! 

(She looks grumpy but really wasn't.  She was in a good mood but was just tired)

Last week we had visitors and really enjoyed our time with them!  Our friends Darlene and Samuel from homeschool co-op in Phoenix came by to visit on their way to see family.  They brought us a pretty lavender plant and some gluten-free yummies and the kids had a lot of fun playing.  It means a lot to the kiddos to see a familiar face!  My parents also came in for a night for Mother's Day.  We had planned to stay in Tucson since we have to be in Phoenix again at the end of May, so they decided to come here.  They hadn't been here since the end of last year and the kids were really excited they visited.  

Deena had her follow up with the orthopedic surgeon and everything looks great!  Her rod is in perfectly and her bone is healing nicely.  He said if she felt good she could take off her splint, which made her VERY excited.  We kept it to put back on if she has any pain, but so far she says she feels great.  I'm trying to keep her going a little bit slower than normal while it continues to heal, but she's a feisty little cutie and not always great at that.  

Other than that, the girls are liking our new occupational therapist.  She seems pretty proactive and works well with the girls.  This week she brought fun dress up clothes to practice dressing and the girls loved it!  I think I have speech therapy lined up as well, though finding physical therapy is proving to be a challenge.

Oh, and this morning we woke up to cookies at the front door from my dad (AKA papa) and then found that all our butterflies had emerged from their chrysalises so we got to release them.  The kiddos were pretty happy!  David got me an in-home massage for Mother's Day and she came today, so I had a pretty good day too.  Tomorrow David's brother, Mark, and his family are coming to Tucson for a visit.  We are really looking forward to spending time with them and are excited for more visitors. 

I think that's all for now!  I hope everyone has an amazing weekend!

Many updates from Madi's world...

First, of course, a few photos.  Madi is too adorable to not share!  Please excuse my typos also.  I do not have any word processing software and am unable to spell check.  Considering I have terrible spelling skills, I'm in trouble.....

Here is a photo of Madi in her new carrier.  I wanted something that would carry her up high, so she could see the world as I do.  I found a used Kelty Country (minus the sun shade, I need to see if I can find one used somewhere) at Hissyfits.  I had a credit there, and was very excited to get such a nice carrier for such a small amount of money.  Today we went on a walk and hiking and Madi loved it!  I am so excited!

Here is a photo of Madi at the park today.  We played while Conner went to his 'connecting letters' class at the community center.  Madi had so much fun going down the slide.  We are working on the sign "more" and she kept signing "more" slide!  She loved it!  She played in the dirt, too, and even ate a little (bleh).  A little girl told me she was the cutest baby at the park, and I have to agree!

So now for the fun stuff.....

Since Madi's UTI is gone, she is eating much better and is a much happier little gal.  She has always tollorated breastmilk well and I am so thankful I have it to give her!  I know it's saved us from being in the hospital due to dehidration many times.  When everything else comes up, that stuff just stays down, and I am so grateful for that!  Though she is still a little gal, she has gotten taller and a little heavier.  Even her hair is longer!  Today I was able to put her in 12 month shorts.  Yes, they were a little big, and yes, she had a big fluffy cloth diaper on, but they actually fit, which was very exciting! 

Madi goes in on Thursday for a urodinamics (sp?) test.  Basically they will test to see if her bladder is spasmic at all, how much liquid it holds, and how well she is draining.  The results of that test will help us know if we need to start cathing her or not.  It's so hard because it is imporant to fully empty her bladder, but at the same time, cathing can introduce bacteria.  Additionally, insurance companies do not agree that a new cath should be used every time, and trying to get them to pay is a struggle.  I am praying we will not have to start cathing, as it's not too pleasant.  Please keep us in your prayers.

Madi's stander/parapodium is almost finished.  We have an appointment February 17th to pick it up.  There is also some good news there.  Since Hangar is contracted with United Heath Care, we get a discount.  That makes her stander $1,800 instead of the $2,500 deductible.  Also, that money will go toward her deductible for the year.  Though it is still much more than we planned on spending, it's a nice break!  Madi got a surprise gift in the mail from a close and much loved relative.  It will help pay for a decent portion of Madi's stander and we are so very grateful for the assistance and love they continue to show our little gal!  I have always said whoever says it takes a village to raise a child must have had a child with special needs.  Madi's physical therapist told us we need to start saving for a wheel chair (an electric one).  I asked what I should plan on and she said.... $25,000!!!  Yikes!  That's double what our car cost!  I guess it's time to start saving!

We put ourselves on a very strict budget, moved some things around, and now have a plan on how to pay for Madi's medical expenses and still have a house.  The plan only works for a year, but knowing we will be ok for a year has really taken a lot of stress off of us!  We are doing the Dave Ramsey envelope system for budgeting.  We are cutting out anything extra, such as cable, and living at a bare minimum.  We did plan for one vacation a year, though we will use that money for other things if need be.  We are also dropping Madi's developmental specialist.  We are keeping physical therapy and occupational therapy, but we work with Madi so much, we feel we can drop her DSI without taking away from what she needs. We still haven't heard back about the house but were told that we should be hearing from the bank within the next few days.  We've heard this many times, so I'm not holding my breath, but I am hoping this time it's the truth!  The other couple dropped out, so we are the only offer on the house right now.  The relator wanted to know if she needed to take a backup offer, but we assured her that as long as they do not ask for more money, we absolutely want it!  I cannot wait to have a home again!  At this point, I'd take a cave just to have something to call my own ;).  Ok, maybe not, but I REALLY want my own place again!

Thank you to everyone who bookmarked  and/or shared Madi's Amazon.com link and made their Amazon purchases through it.  We already earned $16.50!  I think we will get Madi a neuromuscular stimulator (this is a little different than a tens unit) first.  We can use it to help Madi learn how to move her legs to 'walk' in her stander.  It also helps awaken the muscles and nerves in her legs.  Her physical therapist, Tami, has been using one on her when she comes weekly and feels she would benefit from having one at home to use with her daily.  For anyone who lost the link, you can follow any amazon link placed on her blog or go to http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20 .  Thank you so much!!

I will leave you with this very inspirational story tonight.  As you may know, Rachel Coleman, co-producer of the Signing Times series, has a daughter with spina bifida and ceribal palsy.  I ran across this article of her carrying her 9-year-old daughter in a custom made babyhawk carrier.  As you all know, I am quite the fan of baby-wearing, and plan on wearing Madi as long as I physically can, so that she can see the world as I do.  It was so awesome to see her doing exactly what I want to.  I now have some ideas on how to make one of my personal goals for myself and Madi a reality.  When you get a second, you should read this article about it http://www.athleta.net/chi/featured-athletes/rachel-coleman/ . 

That's all for tonight!  I hope everyone has a blessed week with their loved ones!

Hard work can be fun

After winning our court case against the state, we had to figure out how to incorporate additional hours in to our therapy sessions. The only way to do that for occupational therapy was to do two consecutive hours, which is a lot for Madi to do at once. We decided that the best way to break it up would be with some fun play as well as some eating time. Danette, her OT, suggested that we do more swinging time. Though it looks like fun, and it is, it also very beneficial. Both Madi and Conner loved it! The swing hangs in the door-frame and you can use different swings and attachments. I would love to find one that we can use more often. Madi is getting too big for her vibrating chair and cannot be in any type of exasaucer, making it hard to put her down when I get ready in the morning. I am trying to find a used door-frame system so that I can put Madi in a toddler swing while I get ready so that she is both close and happy. If anyone knows how to make something like this http://www.especialneeds.com/support-bar-rainy-day-indoor-playground.html and can help, I'd be forever grateful! In the meantime, we'll keep swinging!