Madi's New RGOs

(Posting from my phone so please excuse the errors)

Madi has always had HKFOs (leg braces that go up above her hips) but she needed more stability and durability so we decided to go try RGOs (reciprocating gate orthotics).   They are bigger and bulkier, but wouldn't buckle or strain as she continues to grow.  We thought it may take her a while to adjust to them, but boy were we wrong!!  As soon as she got in them, she proudly took off.  She is so crazy strong and adaptable, not to mention determined.  We were all pretty thrilled!  She is getting some red marks so we are headed back to Hangar for adjustments, but overall we think it will be a great change for her.  Here are some photos and videos of her new RGOs.  

How Deena creatively passes the time...

And of course, chocolate for everyone helps too (It ended up being an almost 3 hour appointment!  The kiddos did great but oh man it wasn't fun)...

A Video of Ramya Walking

Ramya is doing really well with her walking and we are so proud of her!  For some reason I cannot find my older walking videos of her and I'm bummed because she's made such HUGE strides and I would love to be able to show everyone the difference.  The first videos of Ramya walking were just a few seconds long.  She was too nervous to have me step away and could also only take a few steps before getting tired.  She was afraid of falling and tired very, very easily.  For a while we took a break from walking and just focused on confidence, core strength, and building our leg muscles.  We also moved her from KAFOs to HKFOs (so from leg braces that went to her thigh up to leg braces that go up to her tummy).  We spent over a year just working on all of the skills leading up to walking.  I am proud to say she is now confident enough to take a trip around the kitchen without help!  Her endurance has also increased so much.  It's amazing seeing her transformation!  Here's a video of her cruising in the kitchen....

 

Madi Singing While She Walks in her HKFOs

This girl cracks me up.  I love her confidence and creativity.  She brings so much joy to our house!  She loves to make up songs and is constantly singing.  Here's the most recent one she sang while walking.

 

New HFKOs, Brand-Name Keppra, and a Flooded Car.... YEAH

Today was quite the day!

It started with me waking up to David describing how he drove to get an iced coffee but ended up stranded in a parking lot instead.  It was pouring down rain and had been for hours.  There was major flooding and the roads where terrible.  He was in the grocery store parking lot, but couldn't see well because it was 4:30 am and dark, and accidently went into a deep drainage area in the parking lot.  His car stalled.  There was smoke.  He couldn't get it to start back up.  He tried to push it by himself but it wasn't budging, so he locked it up, turned on his hazard lights, left it there, and walked home.  It was not in a parking spot and was kind of in the middle of the driving lane, but there was nothing else he could do.  My sweet hubby didn't want to make me come get him at 4:30 in the morning, since I would have to drag the kids out of bed, and we live pretty close to the store, so he just walked.  I am not sure why he didn't call my dad, but apparently he enjoyed the walk, and as an added bonus, he got a shower too!  After that he was crazy busy at work and couldn't leave while I was still there, and then we had to leave for an appointment downtown, so it sat for a while.  We were afraid it was going to get towed so later in the day our very kind neighbor, Jerry, took David to his car and helped him push it out of the way and in to a parking spot.  After I got home we called a tow truck to take it to our mechanic.  Unfortunately water got in the motor so we are praying there is minimal damage.

 

 

On the plus side, Conner loved "building dams" after the rain died down.

 



 

 

Today both girls had an appointment with Ron at Hanger to get their HKFOs fitting them.  The downtown area was flooded, and of course that is where we were headed, so my dad came with us to make sure we were safe.  I am pretty spoiled with an amazing dad who loves us very much!!  It was also nice to have an extra set of hands since I had so much cargo to haul.  It turns out Madi needed brand new HKFOs so she got casted for them.  We should get the new HKFOs in about a week.  She wasn't sure if she wanted "a zillion Scooby-Doo's" or just plain pink, but decided on just plain pink.  She did a great job being patient while Ron casted her.

 

 

(Ron was a great sport and let Madi measure him :))

 

(Conner was a great sport as well and baby-sat Madi's new tiger for her while she got casted (yes, that is a glove she drew on ;))

 

 

 

Next up came Ramya.  The great news is she has GROWN and her HKFOs finally needed an adjustment!  Yeah!  He made them 1/2 inch taller and also widened the back portion a bit.  She did great with waiting as well and we were able to take them home fitting, which was wonderful.

 

 

 

On the way home we stopped at Urban Bakery and the kids got gluten-free vegan donuts.  They had been really good for the appointment, which was a few hours long, so I wanted to surprise them and get them a little treat.  My dad stayed in the car with them and I ran in and picked out a few.  I got my dad a few cupcakes too, because there has to be some perk for helping me wrangle 3 kids.  Ramya didn't want hers (I will never understand how a kid can say no to sweets!  I even got her favorite kind... vanilla with icing), but Conner and Madi gobbled them down very happily. 

 

 

 

 

We were also able to pick up Madi's brand-name Keppra today... YEAH!!  I am really praying this helps with her rashes.  There's some back-story on getting the medication, but it was not too bad!!  On Thursday we headed out to see The Rugrats Live with the kiddos.  I had forgotten my phone but decided not to go back for it because I thought it was too late in the day for calls from the doctor.  Of course I came home and realized I had missed a call from our neurologist at 7:45.  I was bummed!!  I called the next day, Friday, but couldn't get ahold of him.  His nurse said he had made notes in the file stating he had called our pharmacy and they were working towards getting the brand-name keppra approved.  The nurse suggested we talk to the pharmacy to verify.  The pharmacy said they did not have a record of this, but talked to George, the main pharmacist who thankfully loves our kiddos, and always remembers us, and he got right on getting it approved and processed.  He called the neurologist office, called me back when he couldn't get through to ask me the best way to get ahold of our neurologist, called again his office again, and then left a message with Dr. Condie's nurse.  He called me back after that and told me he hadn't been able to reach them but would order the brand-name for Madi anyway and figure the rest out later.  Thankfully the nurse called him back shortly after that and sent him a prescription for brand-name keppra, so he ran it through insurance to make sure he didn't need to call them as well, and then called us back and let us know it was all taken care of and our prescription would be ready Monday.  I'm thankful it all worked out and getting it was relatively painless!!

 

 

Next on this week's to-do list is picking up Ramya's glasses, setting up a hearing evaluation, calling to see where we stand with getting Madi oxygen to use during seizures, getting some blood tests done (the MTHFR mutation test for me, and food (IgG and IgE) for Ramya and Conner), homeschool co-op, OT, PT, and the play Charolette's Web.  Oh, and I am getting a teeth cleaning.  It will all be worth it though because we go out of town next week for vacation... woooo hooo!





 

 

 

 

 

Take That Spina Bifida.... Updated Videos of Madi Walking in her HKFOs

Here are some updated videos of Madi walking in her HKFOs.  She has such a huge drive and determination, she amazes me every day!!  She is so strong and beautiful, inside and out, and is truly such a blessing.

Madi has a higher lesion of spina bifida, about an L2, and the doctors said she would never walk.  She is working really hard on proving them wrong! 

Madi has been expressing a desire to walk "all by herself" so Tami, her physical therapist, brought her this walker because it has a seat.  The seat prevents her from falling if she slips or loses balance.  For a while she wanted nothing to do with it, but the other day, she wanted in it and just took off.... literally!  She is a rock star!

 

A Learning Tower for Two

The girls LOVE using our learning tower when they are in their leg braces, but we had a little problem.... they couldn't both comfortably fit any more!  I was hoping not to have to buy a second one for space reasons, but also because I couldn't put them right next to each other, due to the feet on the bottom, and it would make cooking/baking with them harder.  Our neighbor, Jerry, does wood work, and does a great job, so we asked him to help us modify the tower to fit two.  Basically, we added the length of about another half of a tower, so it's about 1 1/2 of a learning tower.  He took it all apart, and then made new, longer planks for the front and back, and made a new base as well.  He worked hard on it, and it looks amazing!  Oh, and then they spoiled us by inviting us over for a yummy turkey dinner.  We are pretty lucky!!  The learning tower is perfect.  The girls have already used it and are loving it!  Her a few photos of our new (and improved!!) learning tower.... 

 

Playdough Fun!

I'm always trying to find fun things for the girls to do in their leg braces to encourage standing.  The kiddos were almost out of playdough and were wanting more, so we decided to get packets of kool-aid and make kool-aid playdough.  It's not edible, but it does smell really yummy, and it comes out with nice colors (except for the yellow... we could barely see that one).  My kids have never had kool-aid to drink, so they now think the purpose of kool-aid is to make playdough, and I'm totally ok with that :).  We used this recipe from http://www.the36thavenue.com/2013/03/kool-aid-playdough-recipe.html:

Author: Desiree Campbell

Recipe type: Playdough

Serves: 6

Ingredients

• 1 Cup Flour
• ¼ Cup Salt
• 1 Packet Kool-Aid
• ⅔ Cup Water *You will end up using between ½ and ⅔ cup.
• 1 Tb. Oil

 

Instructions

1. Mix the flour, the salt, and the Kool-Aid together.
2. Boil the water.
3. Add the oil to the water (we added our oil after we added water.  We started with 1/3 cup water, mixed, then added a tiny more water, mixed again, then kneaded when we got to the right amount of water, which was 1/3 plus 1/2 of 1/3).
4. Pour some of the water into the dry ingredients and mix with a spoon. Keep adding water and work the dough until the color is uniform and feels like playdough.

 

If you want to make this gluten-free, you should be able to just use white rice flour instead.  You could add a little xanathan gum too, to make sure it's the right consistancy. 

 

 

The kids had a lot of fun!

 

(well, you can't tell from Conner's face here, but he really had fun too, I promise!)

 

 

 

Busy, busy, busy (did I say busy?!?!?!?!?)

Life has been busy, but good!  This is Madi's last week of preschool for the year.  She will have one more year after this, then she will homeschool with Conner and Ramya.  We have about 3 weeks left of homeschooling, then will do only partial summer days.  My goal is to do a lot of fun experiments and the such this summer. 

Last week we picked up Ramya's first pair of KAFOs and she is very, very proud of them!  Ron, our go-to-guy that we love at Hanger, made them for her with love!

 

 

When we picked up her new leg braces, we dropped of Madi's HKFOs, which were not fitting well again (that girl won't stop growing!!!).  After Madi's neurology appointment (more to come on that in a second) today, we picked up her HKFOs, so now both the girls have properly-fitting leg braces.  Double the trouble around here!  Ramya's strength and energy is low still, so we are slowly working on building up.  Today she spent about 30 minutes in the learning tower with them on "helping" me make dinner, which is the longest she's gone yet!!  She did start twisting her legs and buckling from her muscles getting tired, but she really made it a long time!  We've still only gotten about 5 minutes in the walker, but I know every day she will get stronger and stronger!

 

 

Last week (or maybe the week before... time just blurs together right now!), all the kiddos got their teeth cleaned.  I had Conner and Madi go first so Ramya could watch, then it was Ramya's turn.  We held hands and she did great!  None of the kids have cavities... YEAH!

 

 

(conner took this one :))

 

 

 

Today was neurology for Madi.  She is going to try a new seizure medication, since the Trileptal doesn't seem to be keeping her seizures away.  We are hoping this one will do the trick for her.  I just hate, hate, hate that she has them!  And, of course, I feel bad for letting her get the MMR vaccine, since they didn't start until she got it.  I was just really wanting us all to get to go to India together, but that is not how things were meant to be.  I know that may not be the reason she started getting them, but it's just quite a coincidence that she had never once in her life had a seizure until she got the vaccine, and then 4 days later, she started and hasn't stopped.  The CDC website lists ongoing seizures as a "rare" side effect of the vaccine.  Considering she's already neurologically challenged, I think the vaccine was enough to tip her over the edge and begin the seizures.  Anyhow, hopefully this new medication will do the trick and we can get her seizures under control.  She was stuttering quite a bit more after our last big cluster of seizures and hospital stay, but that seems to have gone down again, thank God!  She is still coughing a lot more randomly and has thrown up randomly quite a bit more.  They are hoping the medication change will fix this, but if not, she may need a swallow study to make sure she's not aspirating on her food.  The pediatrician also wanted to get an MRI, due to the continuation of seizures, but the neurologist does not think it's necessary, so we shall see what we do there.

 

Next Tuesday Madi goes in for a VCUG, a renal ulrasound, and then gets to pick up her new wheelchair.  Then, the following week, Ramya needs an exploratory surgery to see what is going on with her urinary system, figure out what and how they did surgery in India, and try and clean up her granulation tissue on her belly button that itches her all the time.  He'll also try to figure out if her muscles are tight enough, or if bulking her up will help keep her urine from leaking out.  Her bladder holds a decent amount, but she leaks very easily, so he thinks it may be a muscle tightness issue.

 

Attachment is going well.  Ramya seems to be getting more confident.  Her fine motor skills and coordination is getting better, and her English is coming along very well!  She wants to be held a decent amount, but also loves to be independent and play.  She loves getting and giving hugs and kisses, and we probably hear "I love you" about 20 times a day, which is wonderful!  We are a very affectionate family, so she hears it often as well :).  We are working on telling the truth and getting attention appropriately/ in appropraite amounts/ at appropriate times, etc..  We are playing games (thanks Amy for the suggestion!) to work on taking turns and waiting our turn.  We are also really trying to teach both Ramya and Madi about strangers.  They both think it's ok to touch and talk to anyone they see.  Madi will ask random strangers for hugs, and Ramya will try and get attention and will touch anyone close to her.  I think I'm going to have to be tougher and firmer with the girls to help them get it.  I really think either would just go with a random stranger if they were asked, which is not ok at all! 

 





I think that's it for now!  Please keep the girls in your prayers as they go through testing, and as Ramya has surgery.  We'll have a busy few weeks, but I am thankful that the girls are followed so closely and get such great medical care!!  I am also thankful that, amongst it all, God gives us many moments of peace and laughter. 

Our New HKFOs Are Here!

Today was appointment 1 of 2 this week, and thankfully, after tomorrow's appointment to get Madi's wheelchair adjusted, we are done for THREE months (other than therapy)!  WOOT!  Today we went and picked up Madi's new HKFOs.  Ron Whiteside, at Hanger, worked really hard on them and they look amazing! He finished in record time for her too!  Madi was being a bit of a stinker and not wanting her picture taken, so I'll have to get some better photos tomorrow.  Poor Ron was trying so hard to get her to smile, but she just wasn't having it.  We're so excited to have her HKFOs (aka "up-ups") back!