Ramya's New HKFOs

On Tuesday Ramya got her new HKFOs.  She was SO excited!  She picked a zebra print and really loves them.  Hopefully that will be good incentive to be up and standing in them!  Madi also got her HKFOs adjusted, so both girls have a great fit right now.

Ron adjusts our HKFOs for us while we wait, which is wonderful!  It does take a few hours, though, between our time in the room with him and him adjusting them, so we brought our school work and homeschooled on the road.  I love being able to do that when we need to!

On the way home we stopped at Urban Cookies and got gluten free, vegan donuts.  Well, Conner and Madi did, that is.  Ramya didn't want one and I try and avoid sweets.  That sure made the kids day!

Yeah for standing!

  

Ramya's New HKFOs... Spina Bifida Won't Keep Her Down!

Ramya had KAFOs (leg braces that went up to her thigh), but she was really struggling with walking and posture, so we had her fitted for HKFOS (leg braces that go up to her tummy).  Ron, at Hanger, did an awesome job as usually, and she loves them!  I can't wait to work on walking with her.... spina bifida isn't going to keep this girl down!  Here are a few pictures of her new braces....

 

 

We have two appointments downtown this week, so I decided to take the kiddos to Whole Foods for lunch to make our first trip special.  The love their gluten free pizza (you can even get it with dairy free cheese!!), and also enjoyed some sorbet for dessert. They were pretty happy kiddos!

 



Thursday we head down to see Dr. Goggins, our new orthopedic surgeon.  We are praying we can get a good picture of Madi's scoliosis and a clear game plan on how to proceed with detethering surgery.  I will keep you updated!

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! 

 



 

Madi's Scoliosis Brace and Upcoming MRI Date

Last week we picked up Madi's first scoliosis brace.  She was very excited to pick up her brace and was even more excited to try it on.  She gave it a few kisses and announced that she "loved it." 

 

Madi with Ron Whiteside, our go-to guy at Hanger that we love

Then we brought it home, put it on, and she realized she loves her brace.... just not when it's on.  The first few days of having her wear it were a little rough, involving some tears from both of us.  Unfortunately it makes her body stiff, which throws off her movements and balance.  It's hard seeing her feeling limited in her mobility, as her movement is already limited.  I kept reminding her (and myself) that it would stretch out soon and would feel more comfortable, and that she would learn how to move around in it and get used to it quickly.  Ramya and Conner have also been encouraging her to keep trying, it's very sweet.  I am so very thankful for her amazing determination and positive attitude.  She really is adapting quickly to it and is doing very well.  I am thankful that she will never let anything slow her down, especially not an adorable little pink scoliosis brace!

Madi takes off her brace when she stands in her HKFOs, goes potty, and for a few little breaks here and there.  She also does not have to wear it while she sleeps.  Sometimes I'll notice she doesn't have it on and I will ask her what happened to it.  She will tell me, "I said, "bippity, boppity, boo, and POOF!  It disappeared!"", which really means, bittity, boppity, boo.... I used it as a door stop, mom...

 

 

Did I ever mention that she is creative?!?!?  Ha, I love that girl.   Yesterday I took Madi potty, got her re-dressed, and then told her she had a few more minutes and then she would need to put her brace back on.  I walked out of the room for a second and when I walked back in, she was wearing her brace.  Apparently Conner put it on her, correctly, and she was pretty excited about it.  He was pretty excited and proud as well.  He got the brace in the right place, and even had the straps buckled the correct length.  I was pretty impressed!  Here's a video of Madi explaining why she wears her brace...

 



 

In other news, Madi's head and spine MRI is all set for this Tuesday, February 25th.  We have an 8 am check in at Cardon Children's Hospital, so we will leave around 7 am.  She will have to be sedated and they said to plan for up to 4 hours, though I think it will be closer to 2 hours for the scans.  They are doing 4 scans, and set the estimated time at the max time for each scan.  Her little body just won't take that long to scan, though.  She will have to go NPO (nothing by mouth) and midnight. 

Please be praying that Madi handles the anesthesia well and that they are able to quickly and efficiently get the images they need.  Pray that the anesthesiologist will let me go back with her while she falls asleep, which is really huge for Madi's peace of mind.  Pray that she wakes up calm from anesthesia, as she usually wakes up very confused and angry.  Please also be praying for wisdom and discernment for her neurosurgeon, Dr. Moss, as well as David and I, as we determine if and when she will need detethering surgery.  If she needs it, I am hoping we can wait until May, when she is out of preschool.  Not only would it be summer break, but also, she will be homeschooling full time after that and we will be a little more flexible.  Our homeschool co-op, which she loves, will also be on break for the summer, so she wouldn't miss homeschool co-op.  I am also praying (and PLEASE join me in prayer for this) that her scoliosis isn't truly as bad as her x-ray looked (where she was sitting on her out-of-socket hip) and that doing the surgery, if we decide to go that route, will actually reverse her scoliosis so that she does not have to wear a brace any more, or at least not all day like she wears it now. 

Thank you for being our prayer warriors!!

Fitted for Her New Back Brace

On Friday, Madi was fitted for her new back brace.  The plan is for her to wear this all day, but not at night or when she is standing in her HKFOs.  It will be made out of the same plastic material as her HKFOs and is being custom made/fit to her by Ron (our go-to-guy) at Hanger Orthotics.

Madi was very excited to get fitted for her new brace.  I know she does not really understand what she is facing, but her enthusiasm and amazing attitude does wonders for this momma's heart! 

When she got her last HKFOs made, she was really bummed that there were not decals for eggs, caterpillars, chrysalises, and butterflies.  She wanted the whole life cycle of a butterfly on her HKFOs.  Ron remembered that and brought in a sample of a new decal they have that is all different types of insects.  Oh boy, that made her day!!  She tried to keep the sample, and then kept kissing it.  She is such a ham!  Ron promised he would keep the sections he cut out of her new back brace so that she could keep them.  She was pretty happy about that, and decided that it was ok to give the sample back to Ron. 

Ron made her a "special" tank top to wear under the casting material, like he always does when he has to cast her body to make a mold.  He uses a light meshed material and cuts it to go over her body like a shirt.  She always thinks these are treasures, and refuses to take them off.  Oh yes, she did wear that tank top (which she called a bathing suit) all day, even out to the grocery store ;).  She was so proud of her new "shirt".

We head back in a few weeks to pick up her new brace.  It can go under or over her clothes, but she will need a t-shirt under it so that it does not bother her.  I'm now on the hunt for light-weight tank tops, because it gets so darn hot here.  Adding a shirt and brace is going to get hot for her. 

Friday we go in to the neurosurgeon to discuss everything we discussed with Dr. Segal, our orthopedic surgeon.  I am praying for wisdom and direction for both David and I, as well as her team of doctors.  Her doctors are conservative with surgery, and really consider all the angles, so I am very thankful for that. 

Thank you for all of your prayers for our sweet girl.  We have really seen God's hand throughout our newest journey.  We were actually supposed to see Dr. Moss, her neurosurgeon, a few weeks ago, but they rescheduled the appointment.  The timing was perfect.  If we had seen Dr. Moss before seeing Dr. Segal, it probably would have taken us months to get back in with Dr. Moss to discuss the x-ray and newest findings.  Also, Tami, Madi's physical therapist, was able to go with us to our "big news" appointment with Dr. Segal.  It just so turned out that our appointment time was at the exact time Madi normally has therapy, so Tami offered to come with us.  We also usually wait at least 1-2 hours to see Dr. Segal, but this time, we were seen in about 30 minutes, which is a huge miracle in itself.  Because of that, Tami was there with us for the entire appointment.  It is awesome to have that second set of eyes and second opinion from someone who has seen Madi on a weekly basis since she was a baby.  I am so thankful for these little God moments, and how He is orchestrating everything and putting each little piece in its place. 

 

Our Bad News Appointment Today

Sigh.

When you are a momma of a kiddo (or two ;)) rockin' Spina Bifida, there are a few things that always run through the back of your mind.

1. How is that shunt working? 
2. How is their urine looking today?  Do I think they are still UTI free?
3. Are their bowels up to par?
4. Is there any tethering going on I can't see?

There are a few more, but I'd say those are the big ones.  A little cold, every flu, every bout of crankiness, you question if it could be more.  I don't think this is a bad thing, I think it is just being an aware parent, and part of what goes along with the job of raising a kiddo with some extra health considerations, but regardless, it is always there. 

Today we saw our orthopedic surgeon, Dr. Segal.  He answered #4 for us for Madi.  Bummer.  We knew this day may likely come, but it's a day that I think every parent of a child with spina bifida dreads. 

Before our appointment, the nurse wanted to do a spine x-ray, as at our last appointment, Dr. Segal mentioned she had a slight curvature to her spine and he wanted to check it out.  Turns out there is a curvature.  A big curvature.  She has scoliosis at about 50%.  That's fairly major, and the ramifications of that percentage are not so wonderful.

There is a good chance Madi is so curved because her spine is tethered.  Every child with spina bifida that has had a back closure surgery IS tethered, however, if that tether becomes symptomatic, it's time to treat it, which means a de-tethering surgery. 

The good news is that a de-tethering surgery may stop the progression of the scoliosis.  Dr. Segal said anything over about 40% curved is not often fixed with the surgery, but it would hopefully stop the progression.  The downside of the surgery is that about 10% of children come out with less functioning than before the surgery.  It also leads to more scar tissue, which can then lead to more tethering, which then, of course, can lead to more surgeries to de-tether the spine.  It's a cycle that you do not want to enter unless you have to, though it is important to address the issues and have the surgery if it is necessary, as degeneration can progress by not doing the surgery. 

Dr. Segal wanted us to see Dr. Moss, our neurosurgeon, and talk to him about Madi's symptoms and the possibility of surgery.  Thankfully we were going in to see him next week anyway, so the timing is perfect.  Madi also has to get fitted for a scoliosis brace.  She will need to be in the brace the entire day, unless she is standing, or unless she is sleeping.  I made an appointment with Ron, our go-to guy at Hangar, for this Friday.  I am praying this will be an easy transition for Madi and that she will not hate the brace.  Tami, our PT, came with us to the appointment (This is the first one she has been able to come and I was so thankful to have her at this one... that was totally a God thing) and asked Dr. Segal what that means for her mobility.  Does that mean she has to be in her wheelchair at home, or can she still crawl and climb as normal?  (As of right now, wheelchairs stay in the car for when we are out and about, and we crawl, get held, or stand in the house.  I know we can't/won't do this forever, but for now, I feel it is best for the girls.).  Dr. Segal said that there would be know way we could stop Madi anyway, because she has such a determined personality, so there is really no point in trying.  He said Madi can resume normal routines in the brace, so that is great news!

Before we agree to the surgery, there are a few things I feel need to be done at our appointment with Dr. Moss, her neurosurgeon.

1. Madi's x-ray today was taken sitting up.  Because her left hip is dislocated, though, and her right hip is not, her body doesn't sit level.  Though I do fully believe she is curved, I think the percentage may be accentuated because of the way she sits.  I would like them to x-ray her again, but this time laying on a table, so that we can see how the spine looks at that point.  If it's still 50%, then that's ok.  It is what it is.  I just want to make sure.  Also, if it's slightly off, and she's at say 30% or so, then the detethering may help to reverse the scoliosis, which would be amazing.
2.  I would like to try and establish a baseline for Madi's spine, as this is the first time we have checked for scoliosis.  Madi had a sedated MRI done about 2 years ago where they checked her spine.  I would like Dr. Moss to review the scan, specifically looking at it for the degree it is curved, and compare it to her current x-rays.

After we review those two things and talk with the neurosurgeon next week, we will likely have a game plan for how to proceed.  I will keep everyone updated. 

Though today's news was not what we were hoping for, we know everything will be ok. After drowning myself in Starbucks and talking things through with David and my mom, I feel more at peace about how to proceed.  Madi is such a spunky and determined little girl, and I know she will not let this slow her down.  Though it looks like a setback, I know in reality it will make her stronger.  I wish you could have seen her today.  She was in her HKFOs, standing tall. She walked (with Tami holding her hands) right up to Dr. Segal, looked at him in the face, and said, "I want to walk by myself!"  I fully believe one day she will.  We have been talking about getting her a device like a TAOS or gait trainer to help her be able to walk independently, but Dr. Segal says he does not think it would be a good fit for her, as it would do too much work for her.  He also fully believes that she will get to the point where she can walk on her own (meaning walking in her HKFOs using a walker or her arm crutches, without needing the help and support of an adult) one day, sooner rather than later, and told her that.  He told her to keep working hard and getting stronger, and that she would soon be doing it on her own.  That answer seemed to satisfy her :). 

Please be praying for wisdom and guidance for Dr. Segal, Dr. Moss, David, and I.  Choosing surgery is not always an easy thing to do, especially when it is not life and death and there can be so much grey area, but sometimes it is just so important (like it was with her vesicostomy surgery).  The idea of another surgery with more anesthesia, more antibiotics, and more recovery time, is not ideal, but we really want to do what is best for Madi in the long run. 

Thank you for praying for our family and for walking our journey with us.  Your love and support truly do mean more than you will ever know!

 

Madi's New HKFOs

Today Madi got her new HKFOs from Ron at Hanger.  She LOVES Ron and was so very excited to get her new "up-ups".  She had picked light pink with ladybug decals and was thrilled when she saw them.  Ron put them on her and she kept smiling and saying, "this is amazing!!".  Once we got home, she showed off her new HKFOs to Grams, David's mom, as well as our neighborhood group.  She asked to get up in them and show them how she walked.  She proceded to walk around for quite a while.  She was glowing, and we were both very proud.  It was so sweet!  At Hanger they had put a picture up on the wall of her and Ron together when she was a little smaller.  They showed her it today when we were in and she was excited to be a star.  It was a great day for her!

 

Whew... what a week... oh wait, it's Tuesday!

This week has started off with a bang!

Monday I took Ramya to the endocrinologist.  They agreed that the labs our pediatrician look to check hormone levels look good, but they said those tests aren't always accurate, as hormones fluctuate.  They are sending us for a longer test out of Thunderbird hospital where they will put hormones in her body and see what her body does with them (or something to that extent!!).  I guess it takes about 2-3 hours.  She will need an IV (boo) but it's a quick, awake, outpatient procedure, so that's good.  They also want an x-ray of her hand to try and check her bone age, as she is very small weight and height-wise for her age.  We were headed for an x-ray Thursday anyway, so we're just adding that one one.  The took a blood sample as well to test for a few more things that might be causing her lack of weight gain.  Fun fun!  Ramya did great with the blood draw.  She wanted to snuggle right in to me, which was totally ok with me, and then announced that it didnt' hurt too bad!

On Monday I also got our second post-placement report in from our homestudy agency, so that I could add photos and send it off to WACAP.  I read through the report and got a little sad when I read that Ramya's emotional age is 2.  Though I know that it is true (I figured she was somewhere between 2 and 3), and we expected her to be right where she is and are totally ok with it, it was still hard to read on paper.  I have no doubt that she will grow and change quickly, and I love her just the way she is, but it saddens me that International adoptions take so very long to complete and, therefore, contribute to our sweet kiddos getting so far behind.  She is doing amazing, though, and I am so thankful that God blessed us with her! 

We also got a special box in the mail on Monday from my wonderful aunt who spoils us.  My aunt and uncle live in Hawaii and always find special treats for us.  There were cute little things for the kids, and some very yummy things for David and I.  It was just the pick-me-up we all needed!!  The best part, of course, was the Hawaiian coffee straight from Hawaii!  It doesn't get any better than that! 

Today we headed down to Children's Rehabilitative Services (CRS) for Madi's appointment with Dr. Segal, her orthopedic surgeon.  Our appointment was at 9:45, but we didn't get to see him until about 11:30.  Of course I brought ipad, but forgot to check the battery, and it was dead.  Conner's leap pad worked for about 10 minutes, and then those batteries died too.  The kids did great, but it was just a long wait. We found a "Where's Waldo" book and I couldn't help but laugh every time Madi yelled, "Look!  I found Weirdo!  There is Weirdo!".  Madi was all smiles for Dr. Segal... until he needed her HKFOs off to check out her hips and legs.  That's when all heck broke loose!  She cried hysterically because she didn't want to take them off.  The long wait, the fact that it was almost lunch time, and the fact that she was having so much fun showing off, really didn't help either.  Poor Dr. Segal.  He tried so hard to make her happy, but she cried the entire rest of the appointment (about 25ish minutes by the time we made our next appointment and such too).  Ramya also decided she should get in a funk because Conner didn't like it when she tried to grab my phone from him without asking.  So, at that point, I had two melting down.  I apologized and thankfully everyone was very understanding.  Hopefully when Ramya sees him on Thursday out of Phoenix Children's Hospital (PCH) we will have a much smoother appointment!  Dr. Segal agreed that Madi's HKFOs are too small (again!!) and wrote a prescription for a new pair.  We will go see Ron in August to get Madi casted for a new pair, which she is VERY excited about!

Conner got a special treat today because David's parents took him to Jumpstreet after lunch.  He had a blast and loved getting out and getting lots of attention for a bit.  The girls also got to watch two episodes of Daniel Tiger while he was gone, and that made them very happy, so it was a win-win.  We limit TV viewing and I have the kids agree on what show(s) to watch for the day, so it's not often Conner agrees to Daniel Tiger, hence why they were so excited....

Tomorrow we will meet with a potential respite and HAB worker for Madi.  I pray she works out well!  Thursday we head down to Phoenix Children's Hospital so Ramya can see Dr. Segal and can also get 2 x-rays.  One will check her bowels and one to check her hand bones.  On Friday, we head down to Phoenix Children's Hospital again so that Madi can have a follow-up appointment with Dr. Zuniga, our urologist.  After that we will drive to Flagstaff to spend a few nights at my parent's cabin.  We can't wait!!  It will be the perfect end to a crazy week! 

In other news, I got a refund check from Phoenix Children's hospital today for overpayment.  Somehow they managed to over charge us by over $900!  I'm not exactly sure how that happened, but I am thankful they caught it and I am so not going to complain about getting the money back!

 

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!

Madi's New HKFOs (AKA Up-Ups)

Madi got her new HKFOs today and is SO SO excited!  Ron at Hanger re-did her design.  This one will take more strength, but will give her more mobility at the same time.  She can kick her legs so much better in them!  We took her old HKFOs and are took off the H (hip) part so that we try using them as her night-time knee immobilizers.... that's one way to reuse and recycle, right?!?!? :).  I'll get a video of Madi cruisin in her new up ups tomorrow for everyone to see them in action! 

Being great waiters!  The little girl on the right is Kaylynn, whom I watch 3 days a week.  Conner is so good with her and she is such a little sweetie!



YEAH!  Time to try them on!  (pardon the chocolate from her granola bar on her clothes ;))

Left... old; Right... new

My kiddos sure do love Ron!



A Few "Up Ups" and AFO Adjustments

This evening Madi had an appointment with Ron at Hanger.  Have I said how much Madi LOVES Ron (and, of course, I do too because he always takes amazing care of my little gal)?  She was not happy about getting in the car, but when I told her we were going to see Ron to get her up ups fixed, oh boy did her face light up. Then she yelled, "YEAH, RON!  LETS GO SEE HIM!" as loud as she could.  This is really a big blessing because normally a mention of the doctor gets the opposite reaction. 

(coloring on the paper examination table cover to keep Madi happy while her up ups got fixed)

Ron made Madi's up ups a little wider in the booty.  He also made them a little taller and moved the shin pads up so they would help keep her knees from popping out.  He added a pad to her AFOs so her heel does not pop out at night when she's wearing it.  Next he gave us a knee immobilizer so we can keep Madi's left leg (her tight leg that was casted to treat her clubbed foot and also had a heel cord lengthening) stretched out.  This will keep her leg straight at night, since she usually curls it in, and help keep her from getting tight in that leg.

Before we left, Madi had to show off her walking skills and, of course, it wasn't good enough that I hold her hands.  She insisted that Ron helped her.

Ron is walking in the local spina bifida association walk-n-roll, so we will get to see him again soon.  Madi will be excited!

Just to prove that Madi is a typical life-loving two year old (only possibly a little more mischievous), you can see what Madi did today.  I walked in to the family room and found that Madi had gotten in to my makeup bag. 

Yup, she spilled my charcoal grey powdered eye shadow and my blush.  It's hard to get mad, though, when you look at her and she is grinning from ear to ear looking like this...

I see makeup application lessons in our (very distant) future!  If you haven't already, please join Team Madi for the upcoming walk-n-roll.  Here's a link to join.  We hope to see you there! 

Little Miss

Little Miss is two.  I know, I know, she's been two for quite some time now.  What I mean is, Little miss is two.  She knows (most of the time) exactly what she wants, how she wants it, where she wants it, and, occasionally, why she wants it.  She is still nursing, though it is not very often any more, which makes me a bit sad (not because I think I'll miss it, but because I know how much good it does for her and I worry about constipation and the such once she stops).  She is developing such a little personality and it is really awesome to watch.  She tells jokes, then makes sure to tell you "I funny", just in case you missed it.  We are working on asking, not demanding, and she is getting pretty good at saying "please".  She is also great at "thank you" and has an "I love you" that will melt your heart.  So, without further ado, here are some updated pictures, as well as some updates, on little miss:
 

Madi, Cousin Micah, and Conner

Madi being her silly self

Messy play at it's finest

A trip to the Science Center with Hope Kids

Here dad, this peach is healthy, you eat it.  I want the donut.

Such a little helper

Working hard and playing a little too

Madi's HKFO adjustment.  I had the back cut wayyyyy down because it gets in the way.  She is doing great without that portion of her HKFOs, but at our next adjustment, I want Ron to lob off the top sides too.  She needs the support around her lower torso, but not up her back.  Ideally I'd like her to be able to sit in her car seat with her HKFOs on so that we are not always doing the in and out thing, and also to encourage her to stay in them and use them while we are out.  If we cut off the top sides, this should be totally doable.  Right now I cannot get her positioned in a way I feel is safe because the top part sticks out.  Oh, and they look loose because I haven't been using the top Velcro to get her used to not having it, but also so that she can sit in them better.

We love the learning tower!

Making gluten-free, dairy free bagels and "cream cheese"

Bean time.... dad's favorite time ;)

Poor little guy got an abscessed molar that had to come out.  He spent a few hours sleeping on my like this afterwards as the dentist didn't want him laying down flat, and Conner just needed mommy.  He's such a lovey 4 year old!  I have to keep myself strong for Madi (and hopefully Manasa ;)) so this is good practice.

We are rushing to get everything in line for our home study.  We got fingerprinted on Monday and, of course, Conner had to get "fingerprinted" too.  The lady that did our prints was such a good sport and did Conner's prints for him too.  He is very excited for our upcoming adoption (fingers crossed!!) and has promised to be helpful and a good big brother.



Just what I needed to hear today...

Today Madi went to see Ron at Hanger to pick up her a pretty new AFO for her left foot.  This is her third AFO since she was born.  While we were there I had Ron check out her HKFOs because Tami and I wanted to make sure she was making good contact with her left foot when she walks as her legs are a tad different in length.  Madi took the opportunity to show off her walking skills while I held her hands.  Man, she is really moving!  I used to have to stand behind her and kind of nudge her hips to help her move her feet.  Not any more!  She just does it all on her own, as long as she uses her walker or I help balance her by holding her hands.  Ron had another person from Hanger in with him and they both got a kick out of watching her cruise and listening to her giggle and laugh with Conner.  Madi loves her big brother so much, and he can make her crack up like no one else can!  Ron told me that she is really doing amazing and that he cannot believe how well she is moving about.  We even un-hitched her hip lock and she was still doing great.  She used to just kind of tip forward, but she is getting her balance in place and even that was not slowing her down.  I am so proud of the strong and determined little girl she is.  Sometimes it helps to hear how great she is doing from someone else, even though I already know it.  I can't look at her without thinking of how amazing and perfect she is!

Guess what we have??????????

Ok, so it is probably a pretty easy guess at this point. Today we got to pick up Madi's first pair of HKFOs! They are adorable and we love them! There is definitely going to be a learning curve, as Madi is used to her stander which stabilizes her. She also "walks" differently in her stander than she will in her HKFOs. She is excited about them, though, and has already been in them a bit today. She has physical therapy on Tuesday and I am excited to have Tami show me how to best help her learn to use them. Ron did a wonderful job (I knew he would!) and really thought of everything. There are locking joints at her knee and hip. There are also elastic straps in the back to help keep her from slouching over and to give her a little bounce in her step. I took a few different pictures so you could see exactly what they look like. I know it will take her a bit to figure out how to use the HKFOs, but I really think she is going to love these once she gets the hang of them. I've said it before and I'll say it again.... Watch out world, here comes Madi!!

Waiting....

Getting strapped in :)

And we're up!

Madi and Ron

A photo by Conner

Madi from the back

Proud Momma and Madi