An HKFO Kinda Day

Yesterday was an HKFO kind of day.  We had an appointment at noon with Ron Whiteside, who makes the girls leg braces for them.  We had to leave 30 minutes early to get there in time, so I packed a lunch to go and we headed out.

First Ron casted Ramya.  She currently has KAFOs (leg braces to the upper thigh), but they just aren't working well for her.  She walked in the orphanage, but was not taught how to walk correctly with the correct posture, muscles, etc..., spent a lot of time hanging on her crib, and also dislikes putting weight in her legs and using them, so they just aren't working well.  She also tries to do everything with her arms.  We (me and Tami, her physical therapist) decided that HKFOs (leg braces that go up above her hips) might just be better for her for now.  Eventually she can go back down to KAFOs, and the ultimate goal is AFOs for her, but we think we need to go up, let her muscles strengthen, get her posture correct, and all of that good stuff first.  Hopefully it helps her!  She does well when I am physically holding her body in the correct posture, but sometimes I actually have to use my arms for other things ;).

 

 

Next up was Madi.  Her HKFOs have been hurting her, so she has not been wanting to be up and standing.  She gets tight really fast, so being up is really important.  Not to mention it helps her bowels, bladder, bone density, circulation, hips, and so much more!!  Ron fixed those for Madi, so now she's a happy girl!!

 

That's all for now!  Tomorrow is Ramya's neurosurgeon appointment, so I'll be back with more updates soon :).  I pray you all have a blessed and wonderful day! 

 



 

A Little Urology Update

Last week both girls had renal ultrasounds and appointments with our urologist, Dr. Zuniga.  I am happy to report that everything looks good for both girls!  Additionally, Madi's urine culture from our hospital stay never grew anything, which means that her vesicostomy is working and that the renal reflux is not causing any infections.  Yeah!  We (as in Dr. Zuniga and I) took her off of her prophylactic antibiotic as a trial run towards the end of last year, and I just give her a few natural things (which I will post about separately one day) daily.  It seems to be working great in conjunction with the vesicostomy, because she's had no infections since then.  We have also been working very hard on re-building her gut flora, and now her bowels are working SO much better!  I know, I know, TMI, but that's just life for us.  We go back in 6 months for another visit, but won't need more testing for a year.  I'm excited!

Updates From Our Casa and Easter Picture Overload

I feel like I have SO much to update, but I can't think of it all right now.  Here's a few updates, though, that I can think of.....

1) I had Ramya tested for food allergies and food sensitivities, so both IgG and IgE reactions.  I had a feeling she had some allergies going on, as she would complain of a stomach ache after certain foods (like the pediasure the GI doctor told me to have her try) or would get diarrhea or constipated.  Sure enough, it looks like she has a lot of sensitivities going on.  Her big ones seem to be wheat, oat, egg, banana, beef, pork, and a few others.  The oat and egg are going to be very hard, as we aren't really a cereal family, so we mostly eat slow-cooked oatmeal, pancakes from scratch (which usually have some GF oat flour in them), or eggs.  She LOVES eggs and it's always my go-to when I need something for her to eat.  The beef is a big bummer because we buy local, grass-fed, organic beef and it's a good source of protein and healthy fats for her.  Luckily she can still have chicken, as she usually eats chicken pretty well.  I faxed our naturopathic doctor the results, as the testing was done through our pediatrician and local lab, so he's going to give me some feedback on the results so we can come up with a good game plan on how to structure her diet and dietary changes.  Luckily I'm no stranger to food sensitivities, so while I'm bummed, I know we will work through it and we will be fine.  I am curious to see how the changes effect her (emotionally, physically, etc...) and am praying for some positive outcomes. 

2) Madi's surgery date is officially set for Monday, June 2nd.  We were able to schedule for the anesthesiologist we requested, her neurosurgeon, and her orthopedic surgeon all at once, so that's a huge answer to prayer!!  Yeah!  Please be praying for minimal pain for Madi, a successful surgery, that she will not need the most aggressive and invasive surgery, that she will have even more function and feeling once she has it, that it will reverse her scoliosis, that she will not develop any infections, and that she will not need another.  Please also keep David, Conner, and Ramya in your prayers as they will be without momma for a bit while I am with Madi as she recovers.  Hopefully our hospital stay will only be 3-5 days.  Especially pray for Ramya, as she gets very disregulated when I am gone and her behaviors are intensified for a bit once I come home.  Please pray God will give her peace and that it will not be stressful for her, and that she will transition to my leaving and coming back well.

3)  We have not been to Boston yet, but will be headed there in mid-May.  We already know that she needs surgery, it is very obvious.  This appointment is to help us decide specifically HOW to do the surgery and how aggressive to be (you can read about this more in a post a wrote about a month ago by clicking HERE).  The reason we are going to Boston is because they have the top neurosurgeon in the Country there, and we want to know his opinion on how to do the surgery, so that we have clear direction on how to proceed.  We will not have the actual surgery in Boston.  Our neurosurgeon, Dr. Moss, is amazing and we trust him completely with this surgery.  Because how we do the surgery will be up to us, though, we want to get another opinion so that we can feel confident in our decision. Please be praying that we will get the answers we are looking for and that God will make it very obvious which route we are meant to go.

I think that's about all the updates I have for now!  We had a very blessed and wonderful Easter day with our families.  Here are some pictures from our day...

 

The kiddos with David's grandparents, their great-grandparents

The kiddos and David's parents

 



 

Cousins!

 

I finally got a smile from him :)

 

Looking beautiful in the purple dress she picked out

 

We kept our hair bows in.... shhhhh... it's a secret! If you mention them, she will take them out.

 

This boy loves his candy!

 

Bunny ears!

 

Holding cousin Solomon... such a sweet baby!

 

The girls with my dad, Papa

 

Aunt Angi, Cousin Lauren, and the Squirrels, I mean Girls....

 

My brother, Uncle Tony, and Conner

 

Treats from Grammy and Papa

The Big Hunt

 

We Have a Ramp!

I have had the greatest news to share, and kept forgetting to upload pictures so I can share it!!  I am proud to announce that WE HAVE A RAMP!  I am so excited!  For years I have been working on trying to get a ramp built to our playground so that the girls can climb up independently and go down the slide independently.  We ended up using someone our neighbors were using to build their shed, and I'm so glad we did.  He was so wonderful to work with!!  He really cared about the girls and the project, and made sure that it was just right.  The poor guy took things apart and lengthened and re-did things until he felt it was just what the girls needed, and it is!  They are so excited to have some independence and to be able to play outside without asking momma to carry them up the ladder. 

I want to share the information of the person that we used, because he was awesome to work with.  His name is Jim, he's a general contractor, and if you would like his phone number, please e-mail me at jamie_lugo@hotmail.com. 

I also want to take a moment to say "thank you" to two very amazing and special people who helped make this possible.  You know who you are, and we love and appreciate you very much!

Without further-ado, here are some pictures of the final product....

Originally we had it to where the posts end, but needed to lengthen it, so we did.  We also added carpet to make the girls legs have more "grip" and keep it cooler.

 



 

 

My parents bought the girls this special needs swing for Christmas and it's awesome!

 

 

I had him add sides so that Madi could sit and adjust her legs by herself, without risking her getting a leg over and falling.

 

We put our little padding at the bottom so the girls have a nice soft landing.  They usually want their hand held anyway, which is fine with me, but it's just an extra measure to make sure they are safe.

 

And here's a video of the girls using the ramp.  They were a little distracted by the karate belt, so it took longer than normal, but you get the idea :)

 

 



And here is a note from Madi...

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Our Mini Vacation in California

This weekend we had so much fun on our mini vacation to California.  The timing wasn't great in light of last week's events and our upcoming trip to Boston, but we had promised the kiddos we would go to Lego Land and had already booked the trip, so we just made it work.  I am so glad that we did!  We left on Friday and just got back today.  It was a quick trip, so we didn't get to spend time with our friends or family there, but it was so nice to get away for a bit! 

We had the most beautiful view from our hotel room.  David's brother got us the friends and family rate at the Hyatt and they put us in a corner room.  Two walls were just solid windows with a view of the bay area and the downtown area.  It was amazing!! 

On Friday we came in just about in time for dinner.  We spent the night walking around Seaport Village.  Saturday we just relaxed, walked the downtown, went to Coronado Island by boat, took a bike ride, and swam.  Sunday we spent the day with one of David's bosses, as well as his family and a few of David's co-workers.  Monday we went to Lego Land, and today (Tuesday) we came home.  I wish we could have stayed longer, but it was so nice!  I worried every single day about how we would deal with seizures on vacation, but thank God Madi didn't have any.  I am so very, very thankful for that!!  Here are some photos from our mini vacation....

The view from our hotel room....

 

Madi was a happy girl!

 

Another look out our windows....

 

Is this amazing or what?!?!?!?

 

We had some extra-special luggage!!!

 

On the boat to Coronado Island

 

 

What a beautiful view!

 

Our fun bike ride

 

The girls flew little fairy kites while we cruised

 

A random cool statue

 

We raised up Madi's anti-tippers, and she calls this her "relaxing" position

 

 

At Point Loma with one of David's bosses

 

At LEGOLAND!

 

 

First stop... Bionicle spinners!

 

(Madi wouldn't ride but Conner and Ramya loved it!)

 

The girls loved the planes and rode a few times

 

The girls LOVED that they could ride the horses independently.  It was HUGE for them!

 

The girls both went on the roller coaster AND loved it!!  We rode it 3 times!

 

David and Conner really loved the Star Wars area!

 

 

David wouldn't take a serious picture with me, so I told him these were getting posted ;)

 

The kids thought it was really cool to see the set of the Lego movie

 

The girls even rode the dino roller coaster!

 

I'm so glad we could get away, we all really loved it!