Our Appointment with Our New Orthopedic Surgeon

Today we made the trek down to Caron Children's Hospital to meet with Dr. Goggins, the doctor that we were hoping would take Dr. Segal's place.  Our appointment was at 3:15, and we live about an hour away, so we left at 2:15 to make it there in time.  We checked in right on time but actually didn't get to see the doctor until about 4:45, so it was quite the wait. I am happy to announce, though,  that we liked Dr. Goggins and plan to use him for Madi's upcoming surgery, as well as our future appointments.  He spent quite a bit of time with us and never tried to rush us along.  He was sweet with Madi and didn't seem to be bothered by her mini-meltdown during the appointment.  We talked about Madi's tight heel cord, the plan to fix it, the stander appeal we had in the works, her recent MRI, her scoliosis and tethering, and all of that fun stuff.  He is going to help us appeal her stander and seemed to have a good plan of attack.  He said he would write a letter with everything in it they were questioning so that they didn't have any more arguments, but is going to have his nurse help him with the logistics to make sure that it was done correctly.  I asked him to review her recent MRI and his findings left me quite hopeful.  He had a bit of a hard time seeing her scoliosis, as one scan stopped half way through where her scoliosis is located, and the other one started half way through.  He said he thought he was able to see it good enough, though, to see how she was doing.  Her spine is curved, but only down lower where the tethering is.  He said it was about 20% curved, which is a huge difference from the 50% we were told after her last x-ray.  Scoliosis between 20% and 30% can often be stopped, or even reversed, with the de-tethering surgery.  He also thought that the spine wasn't twisted/inverted, just curved from being pulled.  What amazing news!!  He also had a good plan for getting accurate x-rays in the future, so that we can better judge how her scoliosis is doing.  He's also on board with coordinating her heel cord lengthening surgery (the one he would do) with the spine detethering surgery.  The bummer is that she will have a cast on for 6 weeks, which will keep her out of the pool, but between the lengthening surgery and the cord release, we hope to keep her left leg/foot nice and flexible.

So that's that!  We have a new orthopedic surgeon and we are hopeful that we will get great care with him.  God really answered our prayers!  Thank you for joining us in prayer!

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!

 

A Quick GI and Orthopedic Surgeon Update

Ramya saw Dr. Silber, her GI doctor, a few weeks back.  Though she is still not even close to being on the growth charts, she has gained a little weight and is following her own little curve.  YEAH!!!  I am not worried about her being on the charts, I was just worried about her lack of weight gain at all, and am so thankful to see she is gaining on her own little curve.  She is officially up to 32 pounds (at 6 1/2 years old)!  This is great news!  Dr. Silber is pleased with her growth and

On Thursday, Ramya saw Dr. Segal, our orthopedic surgeon.  He is very pleased with how the muscles in her core and legs are developing.  He thinks if we continue to work with her and help her get stronger, she should be walking with AFOs (instead of her KAFOs) within a years time or so. 

We are still working on getting her to use her legs for walking.  She wants to do it all with her arms, and not use her leg muscles at all.  We are also working on balance and core strength.  It is slow progress but she is really coming a lot way!  She has a very deeply ingrained fear of being dropped, which makes the walking thing a bit harder, but we take it a day at a time.  Her trust is growing and her muscles get stronger and stronger every day.  Right now I focus more on standing and sitting exercises with her, instead of walking, but I know once those care muscles are built up, the walking will come right along.  I am very proud of how far she has come! 

Here are some updated photos of my beautiful girl.  I can't believe she's almost been home a year now.  It's such a blessing to get to be her momma!

 

3 out of 4 down and a nice embarrasing moment...

Today we had #3 out of our 4 appointments this week.  Today was Ramya's turn and we went to see Dr. Segal, our orthopedic surgeon, out of PCH.  Our appointment was at 10:45 and we made it up there just about on the dot.  I had made an x-ray appointment for Ramya at 12:00, hoping to be done by then.  Ramya needed an x-ray of her bowels and also one of her left hand to check for age.  They just want to make sure her age and bone growth/development are in sync.  At 12:00, we still hadn't seen the doctor, so I found a nurse and had them call down to x-ray to let them know we would be late.  We saw the doctor at about 12:15 and he had 3 students with him.  He said he was teaching the students about spina bifida, and I told him, "Great!  You get two kiddos for the price of one today!".  The kiddos were getting quite restless after a long wait, so Dr. Segal did some magic tricks for them.  They really enjoyed them and it helped put them in a better mood.  He's always great with them and I really appreciate it!  He's a wonderful doctor and even came by just to say "hi" to Madi when we were in the hospital for her vesicostomy, even though he didn't have to.  I love and appreciate that he sees my children for the amazing little blessings they are, and not just for their diagnosis.  He showed me Ramya's hip x-ray and told me both her hips are displaced.  They aren't totally out of socket, however, her sockets are not carved out correctly, so they sort of pop in and out.  When he was showing us the x-ray photos, there was a heart on one of them, because they use a little heart-shaped blocker that says, "save the gonads" so the radiation goes around a kiddos reproductive area.  Anyhow, Madi was very fascinated with the heart and thought it was really Ramya's heart.  I explained to her that a real heart doesn't look like that and would be in a different spot.  I told her it was just a sticker, but then she thought that they put he sticker IN Ramya.  After explaining that it had just gone on the outside, and that they had already taken it off, Madi decided to yell that Ramya had a penis.  We then got to have the talk, again, about Ramya being a girl and not having a penis...  in front of the doctor and the students.  They were really trying not to giggle.  Fun fun!  Dr. Segal said we need to keep watching her hips, but that we aren't going to talk about surgery for them at this time.  Next we headed down stairs for x-rays.

After checking in with radiology we took a brief a potty break then got Ramya's x-rays done, which didn't take too long.  We were done by about 1:15.  We headed over to the cafeteria next, as the girls decided they didn't like the snacks I had brought and everyone was starving.  My kids LOVE to go to the cafeteria and order food.  And by love, I mean LOVE.  They look forward to those little trips and it really brightens our otherwise not so fun days.  They offer gluten-free pizza and pasta, as well as other things they really enjoy.  Unfortunately we didn't have a great cafeteria experience, but in the end, the kids had full happy bellies, and that is what counts.  In a nutshell, the guy running the pizza/pasta area reallllly didn't want to make our pizza, as he was busy (which is understandable), but at 1:45, he still hadn't even started our pizza and my kids had, quite literally, been standing in the same spot waiting for about 25 minutes.  He just kept putting us off.  I asked to talk to a manager and he was wonderful.  He got our pizzas started for us and even gave us two free meal tickets.  He really was a nice guy.  I tried to explain to him that we come to the hospital very, very often and that it's not a lot of fun for my kiddos, but that their gluten-free pizza is a like a little ray of sunshine for them (I'm not exaggerating either, it really is.  They get so excited for it.  Conner even chose to come with me to the hospital so he could chose food from the cafeteria instead of going to hang out with Grammy, whom he loves, because it's just that exciting for him).    I told him I expect to wait a little longer, because it's a speciality item that they offer, but that if they are going to offer it, they really should be prepared to make it.  I thanked him for offering it and told him how much we love having that option available and how much it means to the kiddos.  Finally at about 2:10 our food was ready and we got to sit down to eat.  The kids were very very happy and scarfed down their food!  Conner looked at me and said, "Momma, thank you for telling that man to please make our pizza.  I was really hungry and I wanted it so bad.  I was so glad you said that".  Hearing that made it all worth while!

We finally made it home at 3:30, and it felt great to sit down and relax for a bit!  We had left at 10 a.m., and it was a long day for just one appointment and some x-rays.  I really didn't anticipate us being gone so long! 

When we were at Dr. Segal's office, we met a cute little boy with osteogenisis imperfecta 3 (OI3).  This, of course, made me think of Deena, which, of course, reminded me how much I dislike this long process, which reminded me of how much longer we have to go to get her home, which then reminded me that I haven't updated about our process!  Right now I don't have much to tell.  We are working on homestudies and are getting things done as fast as possible.  We basically have to re-do everything, which is a lot.  That's about all of the update I have for now, unfortunately.

I thought I'd share a few little adoption attachment updates.  The other day Madi was talking to Ramya.  She said, "Ramya, I really miss-ed you when you were in India.  I really wanted you to come home.  But now (long pause) I want you to go back to India."   Ramya very seriously and with emotion said that she didn't want to go back to India, which was nice to hear.  It was a good opportunity to talk with the girls about how Ramya part of our family, forever, and she is never going back.  Ramya is forever my daughter, they are forever sisters, etc...  I think it's a good thing for Ramya to hear and be reminded of how much we love her and how, no matter what, she is ours, forever.  I know that all of her last placements have been temporary, but I really want her to see that this isn't just another transition; this is it.  Tonight the girls were taking a bath and Ramya put all of the alligator bath toys in a bucket.  She said, "look, this is a family!"  It made me smile and it was a good ending to our day!

That's about all the updates I have for now.  Tomorrow we head back to PCH to see our urologist and check on Madi's vesicostomy.  After that we head to Flagstaff to  my parent's cabin for a few days.  We are all so excited and can't wait!!

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!

 

Seizures, Sickies, A Mini Hospital Stay, X-Rays, CT-Scans, Orthopedic Surgeons, OH MY! Oh Wait! Did I Mention Maybe a UTI?

Whew.

I know, that's quite the title for this blog post, but it's been quite a few crazy days!

Where to start???

Wednesday we went out for our "big" shopping trip.  We found out Madi is sensitive to peanuts, almonds, eggs, corn, and wheat (likely dairy too, but she didn't have enough in her system for it to show up).  We knew about gluten and dairy, but the rest are new (and were tested because of her big egg fiasco).  We had to re-do the pantry, again, to make it allergen-friendly for her.  That meant sunflower nut butter (instead of almond or peanut), coconut milk (instead of almond), rice noodles (instead of quinoa/corn blend), etc...  I was also very low on groceries as we've just been kind of sliding by with our shopping and needed to stock up.  That was a $300 shopping trip right there.  Whew.  Yes.  $300.  I've never spent that kind of money in a grocery store, ever.  It was insane.  We were blessed with a sprouts gift card by two amazing friends the week before, and let me tell you, it was very much appreciated!  It helped a lot with that trip.  It was such a blessing (thank you friends (you know who you are), we love you guys!!) to have!!

I got a call from a friend as we were leaving the grocery store.  She needed to take her husband in to the hospital for heart failure (Thank God he is doing ok now.  It looks as though a virus settled in to his heart and was causing issues, but is resolving).  I ran by to grab her two kiddos and brought them back to our house.  Next, my friends moving to India the next day came by for dinner.  It was a crazy last dinner with them, as there were 7 kiddos at that point in time (my 3, their 2, and my friend's 2), but we enjoyed seeing them one last time before they left for India.  I got my 3 ready for bed and laid them down with David and sat with/rocked the 2 we were watching so that they would rest and be happy until their momma could make it home. They are sweet kiddos and did a great job while their mom was away.  I dropped them off at around 11:30, got home around 12:45 (we chatted a bit), then crashed in to bed.

Thursday I woke up and got Conner, Ramya, and Madi ready for a doctor's appointment we had at 10:00 am.  Ramya was seeing Dr. Segal, our orthopedic surgeon, for a check-up and to get a prescription for leg braces.  I got the three of them pottied, fed, dressed, and in the car, and we headed for Phoenix Children's Hospital (PCH).  We checked in, waited, got in the room, waited a bit more, then saw Dr. Segal.  He is a wonderful doctor and we really love him.  He heard clicking in Ramya's left hip and set us for x-rays.  Conner and Madi couldn't go in the x-ray room, so I took Ramya in while the secretary played with Conner and Madi.  She made them glove-balloons and they drew faces on them.  They had a blast!  We got back to the room and by then everyone was getting ansy.  We waited a bit more for the doctor to come back, and he walked in to a room of monkeys when he did!  He gave Conner a game on his phone, sat Madi on his lap so she could scribble all over his notes, and finished his exam (like I said, he's an amazing doctor!).  We were finally finished at about 12:45 pm.  Dr. Segal wrote us a prescription for occupational therapy, physical therapy, speech therapy (just in case), and KAFOs (leg braces that go up to the thighs).  He thinks Ramya will be a functional walker, and is hopeful we can go down to just AFOs (ankle braces) in the future.  He did say, though, that her left hip is likely out and will need surgery.  The x-ray showed that the front of the hip was mostly in, but it seemed the back of the hip was not.  We'll need more x-rays in the future to better asses this.  Madi's right hip is out, but he doesn't want to operate as she is a part-time walker.  Because he sees Ramya walking more, though, and causing more strain to that joint, he thinks she will need surgery.  Sigh.  He thankfully wants to wait until she's been here longer and is better adjusted, so at least that is good news.  At this point, we had missed Madi's occupational therapy, so we just went to the cafeteria to eat and relax.  The second we pull up in the parking lot all the kids get excited (even Ramya now), becuase they know PCH has scooby doo fruit snacks full of all kinds of nasty junk that mom wouldn't normally let them have.  It's the one time they get them, and they all love them, so we never leave the hospital without them.  Hey, if you have to go to the hospital for appointments all the time, there has to be a little perk, right?!?!?!?

Ramya's photo of Madi's glove balloon....

 

 



This morning Madi woke up early at 7:05.  She was throwing up and dry heaving, but was responding and seeming ok other than that.  She wasn't stopping the dry heaving, though, and then started staring off and getting slow to respond.  My heart skipped a beat.  Then I noticed her lower half started convulsing in a rhythmic pattern.  I woke David up, got her rescue meds, and gave her those (at about 7:20).  Madi's seizures don't self-resolve and just continue to get more involved, so they have to be stopped ASAP with a rescue med.  The problem, though, is that it's sometimes hard to tell if it's a seizure or just regular old sickies.  She normally falls asleep right after I give the meds, but this time she didn't.  She was agitated and kept telling me she needed to pee.  She finally fell asleep, but woke up very unhappy (which is not like her).  She kept saying her head hurt.  She'd hold it and just cry.  It broke my heart.  She started projectile vomiting, too.  She was lethargic and would wake up for a bit, sleep for a bit, but was just hurting and not happy whenever she was awake.  She's never complained of a headache before, and she's never acted like that after a seizure before, so we were worried about her shunt.  We decided to take her in to PCH.  Because they are on RSV restrictions still, my mom drove so I could sit next to Madi, and David stayed with Conner and Ramya.  Poor Conner was crying and upset at me leaving, and I felt awful leaving Ramya when we are still working on attachment so much.  Thankfully David was there for them, but it was not fun.  Madi projectile vomited in the car on the way again and was still saying her head hurt.  We got checked in at PCH and then the ordred a CT-scan and x-ray series.  I also told them they probably wanted to check her urine and did a clean cath sample for them.  We waited quite a bit (such is hospital life) and then it was time to go get the scans.  Right about then, Madi perked up and started acting like her normal self.  We went for the scans and then waited for the doctor to come talk to us.  While we waited we chatted with Conner and Ramya on facetime.  They were relieved to see us!  After we chatted for a bit, the doctor came in and told us her scans all came back fine.  He didn't think it was shunt related (Thank God!  I know it's crazy to wish a sickness on your kiddo, but I always pray she is "just sick" and it's not shunt related, because shunt issues equal surgery!).  He did, however, see a lot of white blood cells in her urine, indicating she likely has a UTI.  They couldn't get ahold of urology to check her sample, so they sent me home with a prescription for antibiotics and with instructions to fill it if urology felt it was necessary (I will call Dr. Zuniga on Monday and have him check it all out).  The doctor said the UTI could be to blame for all of the symptoms we saw that day.  I don't think it was related to the headache and vomiting.  I think that was likely due to the rescue meds.  I suppose you never know, though.  I do know if she has a UTI that would lower her seizure threshold, so that could help explain the seizure.  Madi acted like her normal happy self once we were home.  Conner and Ramya were thrilled to see us and Ramya would not let me put her down the rest of the day.  David said she cried and asked for me a few times while I was gone.  This made me feel very sad, but at the same time, I'm glad she is missing me.  I would think it would mean she's at least partially attached to me if she is sad I'm gone.  I'm glad she's now gotten to see, though, that momma comes back.  I'm also thankful she was able to be with David, as I'm sure that helped their bonding.

Sleeping angel on momma...

 

 



We finally got dinner (takeout... I hadn't had breakfast or lunch, and had finally gotten half a sandwich in the late afternoon but was still very hungry!) and got all the kids in bed, and then Madi puked again.  It was a lot.  It went on me, on the pillow, and on the bed, so we changed all of the sheets and the waterproof mattress cover, and I changed my clothes.  We got all the kids back in bed and settled again, and then finally off to sleep.  I'm beat, so I am headed to bed as well.  The house is a mess.  Their are dishes in the sink.  I need a shower.  But for right now, I don't care.  Sleep is going to come first.  I am VERY thankful that Madi's shunt looks good and that we were able to come home today.  God is really watching over my little gal!

I pray everyone has a blessed night and gets lots of rest (me included)!!!

 

A Leggy Update

Today Madi visited Dr. Segal, her orthopedic surgeon, for her 6-month check-up.  He said things are looking great!  I always worry about her hips, since they pop sometimes and she tries to w-sit a lot, but he said they were doing great.  He showed me some strategies for stretching out her "curly toe" and told me it was about time to get her HKFOs adjusted (again!).  He also said that her right knee is getting a little bit tight, so I am going to order her a knee immobilizer for her right leg as well.  She already wears one on her left leg at night while she sleeps.  Madi has decided that she loves Dr. Segal, so that is always helpful.  She didn't cry at all, and loved playing with him!  He is great with her too, which helps a ton.  Yeah for a good appointment!

A few updates from us....

1- Poor Madi has a cough and cannot sleep laying down.  I must admit, though, I've enjoyed the extra cuddles!!  Here she is in our toddlerhawk.

2- Conner started swim lessons and loved his first one.  He loves the water!



3- Today we saw our orthopedic surgeon, Dr. Segal, at CRS.  He is a great doctor and we really like him.  He said everything looks good with Madi.  Her back is straight, her feet and legs look good, and her hips feel ok (though he thinks one might be dislocated), so she's still all set for walking.  I need to get her in for some adjustments to her HKFOs, but that's about it.  He wanted to take a video of her walking/jumping to show at the Spina Bifida conference that is in June in California, but she wasn't wanting to cooperate.  He is speaking there and was hoping to get some video.  Next year, I guess ;). 

4- I figured out something today with Madi's HKFOs and now I feel like a complete dooface.  I thought she couldn't sit in her carseat with her HKFOs on, which is a problem since she never wants to take them off, because she leans back too far in them and I didn't feel she was safe.  Well....... I realized today I need to unhook the elastic in the back, and then she CAN sit straight up in them, without undoing any of the straps or anything.  DUH!  I am SUCH a dork!  I have spent months trying to figure out why I couldn't get her in there, and it was SO simple! 

5- Apparently our adoption paperwork went from Oasis to Wacap, then back to Oasis, then back to Wacap, so it's still in lingo and has not made it to a judge yet.  Nancy, our social worker, is hoping to have it there this week.  Please pray we get a judge that finds us favorable to adopt, and that completes his or her paperwork quickly, so that we can get officially matched with one of the girls.  And, since we will be officially matched with one of the girls, PLEASE pray that God makes it VERY clear who we are to adopt.

One More Check-Up... Madi's Looking Good!

Today we went to Dr. Segal, Madi's orthopedic surgeon, and he said she is looking great!  Her left leg is a little tighter than her right, like it always is, so we need to keep working on standing and walking, but other than that, her feet  and hips are good for walking :).  It's been so hard to get her to want to stand up and try to walk since her wheelchair is just faster, but we are working on it.  I don't want to push her, but at the same time, I know how important weight bearing is, so I try my best to make it fun!  Dr. Segal is a nice guy and he always sits down and chats with me for a bit after he is done checking out Madi.  Today he and I had a nice discussion about stem cells and the such.  He is going to China next year and is going to give me the real scoop then so we can decide if it is something we want to persue for Madi.  I was a bit dissapointed because I was really hoping Madi could one day get the nerve re-routing surgery to help her urinate, but turns out, there is some major stuff going on and lets just say that the research one man was publishing may not be valid.  There are some studies going on in the US, though, so I am still holding on to hope that they will figure out something that will help Madi void without being cathed. 

Oh, and just to reiterate that you should always ask "why", I have a story from today.  When I walked in with Madi (well, I should say, when Conner and I walked in and when Madi zoomed in impressing everyone within sight), the nurse told me Madi needed a hip x-ray and asked me if that was ok.  I told her "I guess so", but after thinking about it, asked why she needed one, since Dr. Segal had once told me that he did not really care if her hips were fully in or not (he explained why and it made sense).  She got all huffy with me and said she asked me if it was ok and I had said yes.  I told her that when she had asked me, I hadn't had time to think about it, and that all I want to know is why she needs one before we get one.  Though we don't pay for her x-rays, someone does, and it seemed like a waste of money.  Not to mention that there is of course some radiation with x-rays and even if it is small, I don't want it for no reason.  She told me I could talk to Dr. Segal about it and then have it done.  Turns out Dr. Segal didn't want it done, so we would have upset Madi and wasted everyone's time and money for no reason.  I'm glad I asked why!

Tomorrow we are off to Disneyland!  We're bringing Madi's little pink hot rod (wheelchair) and I know she'll have a blast crusing around.  Conner is so excited and was totally off the wall today.  Wish us luck with the car trip, and we'll update with pictures when we are home!!  WOO HOOOO!

Wow, that was fast!

First a few pictures, of course :)

4th of July

Conner is so sweet with his 'sissy'

Madi loves her papa!

Daddy's Girl

Grammy is very special to Madi too!

Conner and Madi were in David's brother's wedding

Momma is so proud of her little girl!

Madi loves Uma and Umpa too!

Madi and her granddad

I talked to Ron Whiteside from Hanger, who makes Madi's AFO's and her parapodium, and he said he officially cannot make her parapodium any taller.  He thinks she has about 3 months left of wear, and then she will be too big for it!  Dr. Segal was going to write a prescription for Madi's HKFO's when she turns two, but I'm going to call and see if we can go ahead and bump that up.  She is mentally ready to walk, and wants to be "up" so badly.  She tries so very hard, too, but cannot get her body to do what she wants it to.  I feel that she is ready, and hope he agrees!  It feels like we JUST got her stander, though I suppose it was only back in February.  We are still waiting on her wheelchair and hope to have that soon.  I have been getting Madi prepared telling her how much fun she's going to have going "zoom zoom".  We even read the book Zoom by Robert Munch., which both she and Conner thought was hilarious!  When I met Robert Munch at a teaching convention the school I worked at sent me to, I had him dedicate the book to my students.  Who knew I would be getting someone so wonderful he could have dedicated it to!  I think I may write him, explain the situation, and ask if he can sign another copy for me. 

She's got some fancy new shoes

Madi's cast is officially off! YEAH!!!! She is now sporting a very cool pair of new shoes. I'm going to make little flowers and bows to clip on them and have already ordered a few pairs of cute knee-high socks from the children's place. I mean, hey, she's still got to be stylish, right!?!?!? We are, unfortunately, having some issues with these, so she actually may be getting a different pair. I noticed she was getting pressure sores on her left foot that weren't letting up after 30 minutes. She also had some swelling and warmness, which is not normal and was only on her left foot. I started using the "pringle chips" to alleviate it but it's not working. Her feet are also not staying planted in her shoes as they should. I constantly readjust, and they constantly pop out. It is an upward battle for sure. I showed her physical therapist (who, by the way, we LOVE) today and she is also concerned. We have an appointment set up to go back in and see Dr. Segal so hopefully he can help us figure out what is going on. Let me tell you, though, this girl is something else! She doesn't let anything get in her way. She's already figured out how to start crawling around again. What an amazing little gal we've been blessed with!

And that's that!

Her heel cord is officially clipped. I was praying it wouldn't need to be done, but it was just the way it had to be. I researched other methods for lengthening the tendon and talked to other parents who had children with clubbed feet but was unable to find another suitable method. The parents that did try other methods were not only few and far between but also felt the methods they tried were ineffective. All the kids ended up needing the lengthening anyway. Today she got her final cast, though, which is awesome! She will have this one for three weeks and will then go in to special shoes that will keep her feet positioned shoulder-width apart and at the correct degree of angle. I am so thankful we are able to utilize this method and avoid surgery and am praying that her foot does not slip back in to the clubbed position again. Unfortunately, this happens about 70% of the time with children that have a clubbed foot AND spina bifida because the foots tendency to re-club combined with the lack of weight bearing and, of course, gravity, make the reoccurrence rate pretty high. Our next step will be to utilize a stander to get her in to standing position and start bearing weight in her legs. And after that, well, who knows. It's been quite a journey, and it's not even close to being over, but I will say that I love it! I'm not sure why God chose all of us for our roles but I trust in His plan and know He has amazing things planned for our little gal.

Madi has her first casting

Today Madi got her first cast to correct her clubbed foot. Dr. Segal uses the ponsetti method of casting which involves slightly moving the foot a little at a time and releasing the heel cord to correct the foot. We waited 3 hours at CRS (Children's Rehabilitative Services) before we even got in to see the doctor but both Madi and Conner did great! Conner was very sweet and kept kissing "sissy" to make sure she was ok. He was a bit sad that he didn't get a cast himself, but I wouldn't be surprised if our crazy little man ended up with some kind of cast at some point in his life. Madi is doing great with her new cast and is finally taking a nap after a long day! She did take a short nap all wrapped up on mom, so thankfully she remained pretty happy throughout the whole thing. We go back in two weeks to get a new cast put on. We are very thankful to have the casting option available to us so that another surgery is not required!