Little Hooves and Big Hearts

We have been so blessed to be part of Little Hooves and Big Hearts in Tucson. The organization came to the Children's Clinic when we were there for physical therapy one day. They had some of their ponies with them, and the kids loved spending time with them. The ponies had Build-a-Bear shoes on, so of course the kids fell in love right away. We now get to go work with the ponies on a monthly basis and it really means so much to the kids. They include all of the kids and it really boosts their spirit.They talk about it non-stop!

Everything they do for our kiddos is provided with no cost to us. They are so sweet and amazing with the kids, and we really appreciate all that they do! If you are looking for an amazing organization to give to, this is it! You can click HERE for more information about their organization.

And now, for your viewing pleasure, here are some adorable photos of the kiddos working with the ponies.

Feeding Therapy, Vision Therapy,Physical Therapy, Neurology, and Neurosurgery, OH MY

I think this is my LAST post to catch up!!  YEAH!!

I have a lot to update on medically, so I will separate each post by topic :)

• Feeding Therapy
• I'm excited to report that Ramya was approved for feeding therapy.  Eating has been just so very hard with her and it's been a struggle to find help.  We've had swallow studies, other feeding therapy evals, attachment therapy, allergy testing, a GI doctor, had her treated for parasites even though that came back negative, treated her H-Pylori, and the list goes on and on. I heard about a great program here in Tucson that focuses on feeding therapy through play.  I was upfront with them and told them she's not the typical kiddo that they see, because there's not a physical or muscular problem we can find that's keeping her from wanting to eat, but explained she never got to be a kid and never got to have fun with her food.  I told them the struggles at home, her history, and they agreed to an evaluation.  I talked more with them during the eval and they agreed to see her as long as insurance would approve it, because it's classified as speech therapy, and she already receives speech therapy weekly.  I was able to get that part worked out so she was able to start.  I'm so so thankful to have help now!  Ramya exerts control through her food.  She spent a really long time not gaining any weight, because when she chooses how much food to eat, she only eats about 400 calories a day and has no desire at all to eat, even when it's her favorite foods.  I was able to get her healthy by heavily supplementing with a high fat, calorie, and protein shake I make for her (this was to avoid a g-tube because she was loosing weight.  I feel like she just needs more time to work through things and a g-tube won't help her emotionally), but she still has very little food intake.  The goal of feeding therapy is to make food fun and help re-set the way she views food.  We are hoping to get her to an appropriate amount of food in an appropriate amount of time so that she gains on her own unique growth curve.  I also want to find another attachment therapist in Tucson so we can work on the emotional aspect of eating while we work in feeding therapy.  I'm praying it helps!

• Vision Therapy
• Ramya is still in vision therapy and we just signed her up for another 12 weeks of individual lessons.  She's working hard though and making improvements, which is wonderful.  Conner, on the other hand, has exited and we are very excited!  His reading and writing have made huge gains and he's very proud of himself.  We are proud of him too, and our pocketbook is quite happy as well.

• Physical Therapy
• Ramya and Madi officially started PT at the Children's Rehabilitative Services in Tucson.  We were really, really wanting in-home therapy but we were unable to find anyone after months of calling.  At CRS our schedule is all over the place, they don't have openings for us every week, and Deena hasn't been accepted yet, but it is a start.  I've been talking to CRS and, even though normally they wouldn't take Deena because she's not in CRS like the other two girls, they are going to make an exception for our family, so hopefully Deena will be able to get in soon.  So far it's going well and we are excited to be back in physical therapy.   

• Neurology
• Last week we followed up with neurology about Madi's medication changes.  We are almost fully weaned on to the lamictal and so far she is tolerating it well.  The plan is to go the longest we ever have without a seizure, and then we can consider weaning down on the keppra.  Unfortunately, we need to do a blood draw and check the lamictal level, but not quite yet.  The hard part is that Madi is a very hard draw and blood draws are also very traumatic for her, so we are already starting to pray it goes smoothly and they are able to get what they need on the first prick. 

• Neurosurgery
• Thursday the kids and I drove to Phoenix to see neurosurgery.  Ramya and Madi both look great and don't need to go back for about a year and a half.  Before we go back in we will get new MRI scans since it's been a few years since their last ones.  If they can hold still, they won't need sedation, but if needed, we are able to sedate them. We will see how they are doing at that time and decide at that point.  We stayed in Phoenix to visit family and friends for the weekend and enjoyed our time there.

I think that's all my updates for now.  Whew, I'm finally caught up!!  Thank you for always following our journey and praying for our family.  We appreciate you!

Building our new Lego Birds set

Playing Barbies... aren't they just the cutest?!?!?!?

A Quick Medical Update

I'm going to start my medical update with... David!  I know I don't talk about him often when I'm talking medical stuff, but David got some news a few weeks ago, and I thought I'd share. 

David's been struggling a lot with having brain fog, being excessively tired, frequent headaches, etc... In addition to some medication changes for his anxiety/depression, we decided to get him allergy tested because I suspected some underlying food sensitivities that are aggravating his system.  We got his allergy tests back right before vacation (FYI- we did IgG and IgE to test for allergies as well as sensitivities) and it turns out he is highly sensitive to eggs and all dairy.  He is also sensitive to broccoli.  The doctor doesn't feel the eggs or broccoli are likely aggravating his system, though he does recommend cutting them out, but dairy can definitely be contributing to these symptoms. 

Some dairy allergies produce a drug-like effect on the central nervous system and lead to brain fog. Food reactions can also trigger irritability and confusion. Some of the most common food allergies are to cow's milk and other dairy products, such as cheese, ice cream and yogurt made with milk. Some people cannot digest or absorb casein, a protein in milk, or lactose, a sugar molecule in milk. This causes an allergic reaction. http://www.livestrong.com/article/333669-foods-that-cause-brain-fog/

 

So, starting today, David joins our growing list of family food allergies.  Eggs, dairy (all types), and broccoli is out for him.  Conner can't have gluten, dairy, or peanuts.  Madi cannot have eggs, gluten, or much dairy, as well as almonds or peanuts.  I suspect Ramya has a dairy sensitivity as well, as I have noticed she gets diarrhea after eating dairy.  I know dairy bothers me too, so at this point, we are all just going to be dairy-free.  For now, that's our list.

 

Right before vacation I turned in stool samples of Ramyas.  The doctor wanted to make sure she didn't have any internal perisites.  I got the test results back today and I'm happy to say, she's parasite free!  Yeah!  I pray I never ever have to collect samples again.  Yuck.

 

We've had a looooooot of shower chair drama, which I will post later.  After a very long wait, I am happy to say the correct chair (part of the long story) should arrive tomorrow.  I can't wait to be able to get the girls in the shower!  YEAH!!!!!  I'll post a picture, as well as the whole long story soon :).

 

Tomorrow I take Ramya down to the general surgeon because we are still trying to figure out if she will need the cecostomy tube some time in the future.  The surgeon wanted to meet with us after we went in to GI.  I think that's our only appointment this week, so that's nice.

 

We've had to make a hard choice to take Ramya's physical therapy down to every-other-week.  Because we have crummy insurance and our PT is out-of-network, we spend $115 a week right now  for her to have physical therapy.  That's on top of the $850 we spend a month on health insurance, and the hundreds we spend on co-pays and deductibles and the such.  We can't make it on David's base salaray, and so are cutting a lot to try and stay above water (he won't be getting bonuses for quite some time due to some crazy things going on that are just way to complicated to type out).  I know that our troubles are so minor compaired to so many others, and that we are very spoiled, and for that I am thankful, but it does feel kinda bleh right now.   We're praying that Ramya will get on long-term care soon.  We can apply for her again in October after our re-adoption date.  That's when she will officially have her full name and official US paperwork.  They told us she won't qualify, but please help us pray for a miracle!  Though we would still have the $850 a month, it would help so much with everything else.  We know we will be fine and we will get through this time, we just have to cut down, and sadly, this is part of what we need to do.  I try to work with her a lot on my own, and I know she will continue to thrive despite our cut-back. 

 

Thanks for walking our journey with us and for always keeping us in your prayers.  We appreciate each and every one of you!

 

 

Who knew a Christmas tree box would do all this?

It has been really hard to get Madi to want to practice walking.  She was struggling with it and was giving up, not really trying because it was hard.  She just could not quite figure it out.  I think part of the problem was that she was still trying to shuffle, like she did in her stander.  We'd been practicing on and off, but not as much as we should have been, as I didn't want to push her.  Yesterday I decided to put her chair out of sight and just tell her it was time to work on walking.  She and I practiced quite a bit, and then she asked to get in the Christmas tree box.  Conner had been playing in it and she wanted a turn.  I put her in and noticed that she had an easier time with walking.  She was taking a few steps on her own, without any help/support.  It's kind of crazy too because I had been fighting and fighting to not get a fake tree.  Finally I gave in this year and we bought one from Michaels.  Who would have guessed that God would have a plan for that silly box?  I called Tami, her physical therapist, and told her about it so she could see her walk in it during her session today (I had to help in Conner's class so my mom was going to be here with her for therapy).  Tami worked with her again today in it and I came home to this....

I had been down the last few days because I felt like I was failing at helping her walk and I did not know what else to try.  Who would have known God would give us such a simple answer!  I am so very proud of my little girl.  It is like the light bulb finally went off for her, and now she understands how to move her body to make walking work.  She is such a smart little cookie!  Now we are faced with the task of trying to figure out how to make her something like the box out of PVC pipe, wood, hand railing, or something of the sort so that she can use it to practice once this box falls apart (which it is quickly doing).  With my dad's help, though, we'll figure it out.  Way to go Madi!

There She Goes!

This video is from today.  Sorry, again, for the terrible quality.  I really need to empty my video camera so I can take good videos!!  Tami, Madi's physical therapist, was behind her helping her move her shift her weight.  Madi is catching on quickly!  She'll be up and running in no time!

http://www.youtube.com/watch?v=WKfVBtfHfds

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!

We Found a New Physical Therapist

Conner is SUCH a great helper!

Madi had a wonderful physical therapist (Gail at Aspire Therapy), but the 40 minute drive each way, once a week was killing us!  I knew that an in-home physical therapist is really hard to come by, but asked our DDD coordinator to send me a list of companies to call.  As I am looking at the list and calling places one catches my eye as they specialize in children with spina bifida.  I thought it was too good to be true, but called anyway.  I talked to the first person who was full, but gave me her associates number.  She asked what Madi's diagnosis was and when I told her Spina Bifida, she got really excited!  She said she loves working with children spina bifida and would find room for Madi.  I was so excited I wanted to scream at the top of my lungs!  She has come to our house once and is amazing!  She sings to Madi while she works with her and lets Conner "help".  She is such an answer to prayer!  I forgot her name and the name of her company, because I'm terrible with that stuff, but I'll be back later to update with that....

Raising two special kids!

Last Saturday we went to the Raising Arizona Special Kids day at McCormick Ranch Park. We all really enjoyed ourselves and it was awesome to get a free day out to have some fun.  Being there just reiterated how blessed we are.  Compared to so many other Children, Madi's challenges (I always struggle with finding a word to put there.  I guess technically it's a disability, but that just sounds so inhibiting.  

On another note, Madi had a check-up with Doctor Moss at Phoenix Children's Hospital this week.  Her head measurements are coming back normal, her fontanel feels good, and her shunt appears to be working correctly.  We had a few really big bumps in the road in the beginning, but we are hoping to be past those now.  Dr. Moss said that once you have a shunt working well for about two years, you are good to go!  We are praying that this shunt is the one :).  Madi is continuing physical therapy with Gail at Aspire therapy and is doing well.  I am looking for an in-home physical therapist, though, and hope to have one soon.  We love gail, but the 40 minute drive, one way, to see her every week is getting old fast.  Research shows that children under 3 do best in their natural setting, so ideally, that's where we would like to be.  Madi also started receiving services from a developmental specialist.  She's getting a lot of help and is doing great!  She's a very happy, healthy, and strong little girl!  

I don't update about Conner much, since this blog was designed to keep people up to date on Madi, but he is doing very well also.  He is getting his last set of molars (for a while) which has made life interesting.  He was having a really hard time sleeping so our nautropathic doctor, Dr. Kail, at Arizona Advanced Medicine has us giving him small doses of melatonin and it's helping so much!  Hyland's Teething Tablets are a God-send too!  I'm in the process of making Conner a cape with Spiderman on it and he's thrilled!  He's a huge Spiderman fan!  Right now he's a fan of Spiderman, the letters 'o', 'a', and 'i', and the color blue.  He's a really smart kiddo and nothing gets passed him!  He is such a neat little boy and he makes life fun!

God blessed us with two beautiful, fun, amazing children and we are so thankful for that.  We truly are raising Arizona's special kids!

Her first laugh

Today Madi laughed her very first (awake) laugh and it was adorable!  She started cracking up, but it scared her, so she ended up crying and laughing at the same time.  I wish I could have gotten it on tape, but we were at physical therapy at the time and I didn't have my video camera with me, or even my phone.  She is growing up so quickly!  I am glad I take every moment I can to hug her, hold her, and enjoy these little moments with her.  She is one amazing little girl!