Round 3.... The BIG News From Our Third Opinion

Well, today went a totally different way than I expected, but in a good way! 

Dr. Shafron remembered us from Madi's previous surgeries that he did (he did a few of her shunt surgeries when he and Dr. Moss were both still out of Phoenix Children's Hospital and Dr. Moss, our regular neurosurgeon, was gone.  He didn't actually recognize Madi, of course, because she was only about a month old when he operated on her, but he recognized her name.  He said he doesn't always recognize or remember names, but that for some reason ours stood out to him.

Dr. Shafron reviewed all of Madi's medical x-rays and MRIs over the last few years.  He said that when he compared the MRI scan from when she was two to the MRI we just did a few months ago, her tethering was actually stable and he didn't see any significant changes.  He also said her spine does not have the classic look of one with significant scoliosis.  He could see both side of the spine, and the nerves were straight and not twisted around the spine at all.  He said her ventricle size had very slightly increased since the last scan, but that it is very minor and he isn't too concerned since she is showing no signs of shunt malfunction.

I asked his take on surgery, as well as the approach he would recommend.  He feels that there is no rush to do surgery, and in fact, he's not even sure she warrants a surgery.  He said he feels like we need to get further x-rays to study her scoliosis.  He said that we really need to figure out what degree she is, try to figure out if it's stable or if it is worsening, and then see if the orthopedic surgeon feels that a de-tethering surgery would really help her.  He said they usually watch the spine carefully by using the same test and watch for change.  He said since we don't have a baseline, we don't really even know if there is a change.  He also said there are multiple things, like her syrinx or her Chiari II malformation, that could be causing the scoliosis as well.  He basically said that he thinks the orthopedic surgeon would be the one to determine if she needs surgery or not, because he's not convinced she does.  He also does not recommend an aggressive surgery when the time comes to de-tether her.  He said that he only uses an aggressive surgery with a child that has had multiple de-tethering surgeries before and that has no movement at all in the legs.  Because it would be Madi's first, and because she does have some movement and feeling in the legs and toes that you wouldn't expect for her level, he said that he would not want to do anything aggressive or permanent.  That was music to my ears!!

Right now we have decided to put off Madi's surgery, get back in with Dr. Goggins, our orthopedic surgeon, and get some better, more accurate pictures of her spine, that include standing in her HKFOs with hips level, laying, and side views.  Next we will determine where her spine really is at.  At that point we will decide if he thinks she warrants surgery, or if watching her and continuing to carefully monitor her would be a better approach.  Our appointment with Dr. Goggins is June 12th, so I hope to have so more information then. 

Thanks so much for praying for our family.  Please continue to pray for answers as we decide if she needs surgery or not, and also pray for clear x-ray photos so that we can get an accurate view of her spine and her scoliosis.  I am so thankful, though, to have a good plan of action and to be able to have Dr. Shafron do the surgery so that we can have a conservative surgery, and still be in Phoenix.  I am so thankful for the answers we got today!!
 

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!!

Oh what a day!!!

Today did not go how I envisioned it would!  I'm beat! 

A few nights ago, Conner woke up saying "ow" and saying his knee hurt.  I brushed it off as growing pains, as he seemed better in the morning.  That evening, he was limping and wanting to be held, and last night he was up alllllll night long upset about his hip hurting (right hip).  I gave him Tylenol and it didn't even seem to take the edge off for him.  This morning I called the pediatrician and brought him down.  Conner's hip hurt so bad he wouldn't walk and I had to just carry him around all day.  He said his hip is definitely off, but wasn't sure why. Because it was only one hip, he didn't think it was growing pains. We did a blood draw to test some of his numbers and see if it could be viral and he also sent us down for an x-ray to make sure nothing was off there.  Nothing happened to Conner's hip (as in he didn't fall down on it or anything like that), so it would make more sense to me if it was viral.  He's been more sensitive and off the last few days as well. 

His x-ray came back fine, so he thinks he either sprained or pulled something, or he thinks it still could be something viral.  Once we get the blood test results back, we should know more.  For now, we're icing it and I'm going to give him some motrin before bed.  I'm praying it just starts resolving itself quickly!!

After I got Conner home we ate and I left him with David so I could take Madi down to Phoenix Children's Hospital for a neuropsych evaluation.  We are participating in a Spina Bifida research study and this is part of what they needed from us.  The study took about 2 1/2 hours.  Madi thought it was fun, because they "played games" the whole time, but I was bored out of my mind!  I should have prepared better and brought something to do.  I talked to the guy who is organizing the study the whole time, though, so at least I had someone to talk to.  They paid Madi $50 for her time, so I am debating if I want to let her do something fun, like a movie and dinner, with it, or if I should be practical and put it in her medical fund ;). 

So that's our fun today!  We are just now sitting down to dinner (it's 7:00) and then I think we are all off to bed :).  Please keep my little dude in your prayers!

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!

And we are home!

Thanks for all of the prayers (you know how much we covet those :)).  The drive went amazingly well, though the shunt series and cat-scan, not so much.  The results were great, but Madi was NOT happy to have them done.  I held her hand and sang to her as I wiped her tears and told her I promised it wouldn't hurt, but it didn't make a difference.  Big scary machines are just not on her top 10 list this year.  We both survived, though, and Dr. Moss said everything looks great!  There are no blood clots or areas he is concerned about, and though there is more fluid on the right hand side, he is not worried.  It was there the last 2 times they checked too.  I told him next time I was not going to come right before a Disneyland trip we had planned, like we've done the last two times, because I always get nervous we'll have to be admitted in to the hospital and miss the trip.  We always have a plan of how David and Conner will go and we will meet up afterwards if anything isn't right, blah blah blah.  Anyhow, I brought Madi's wheelchair and she had a ton of fun showing off.  She did turns and went forwards and backwards and tried not to smile when everyone said they were amazed at how great she was doing.  She got told she was beautiful about 200 times, and that she was smart about another 200 or so, and she enjoyed every second of it!  When she would wheel past someone new, she would go really slow until they said something to her about how cute she was or how great she was doing.  Then she would smile and zoom off to the next person.  No one believed that she was not going to be two until next month and all the nurses said they have never seen someone so young move around like that.  We already know she is amazing, of course, but it was fun watching how excited she got when someone else told her (she's used to hearing it from us ;)).  I'll be back later with a few photos.