Two Big Reasons to Rejoice Today

We have two big reasons to rejoice today!

To start with, both girls had appointments with Dr. Goggins, our orthopedic surgeon, today.  He wrote a prescription for new HKFOs for Ramya as she has outgrown her current pair (Which is great news because she is finally gaining weight!!  Her eating hasn't improved, but she is looking so much healthier, building muscle, and retaining new information so much better!  Yeah!).  He also said he signed off on both the girls new wheelchairs, which they were both recently fitted for, so we are excited to get those.  The biggest news, though, is that Madi's scoliosis came in at 42 degrees when standing again (laying down with the pressure off her dislocated hip it goes down to 28ish degrees), which means her scoliosis is stable and right now there is no reason to proceed with detethering surgery.  Of course if she started declining neurologically, started losing function, or her scoliosis suddenly changed we would know the surgery was necessary, but for now, she does not need surgery.  We go back in 6 months and we will check Madi's scoliosis again at that time. 

Here is the second great bit of news today...

 

 

I know that is hard to read, but that is our U.S. approval to adopt from India.  That means we are one step closer to being able to bring "D" home!  I'm almost done with our dossier paperwork and then that will go to India for approval there.  We still have a long way to go, but I love that we are one step closer!

 

 

Please be praying for our doctor paperwork to get notarized correctly tomorrow (wait, today?  I'm up past midnight so often I forget it means a new day has begun :)).  We have had some issues getting it completed so far.  Basically, about 2 or 3 months ago we got full physicals and a blood panel done to make sure we were healthy.  Everything looked great so our doctor signed the paperwork needed for Arizona/US approval stating that we are healthy enough to adopt.  For our Dossier India wants a different form, though, that states (give or take), "Upon examination (insert name here) shows no signs or symptoms of hepatitis, tuberculosis, HIV, or any other communicable diseases."  I called our office, twice, to tell them what we needed.  We set an appointment date, found a travel notary, and showed up to get the doctor's signature notarized.  After waiting about 45 minutes we were told they wouldn't sign the paperwork because we had never actually been tested for hepatitis, tuberculosis, or HIV.  I tried so hard not to get frustrated, but was feeling pretty bummed.  Not only did we have to pay the travel notary anyhow, as well as our co-pays, but I have been going to the same doctor for about 22 years and David has been going to them for about 11 years.  They have done blood work for both adoptions, and we are always very healthy.  Not to mention the form said that it was "upon examination", not via blood test.  However, I do understand the only way to really know is to test us, so we went ahead and got tested.  All of our blood work and testing came back negative, as we expected, so they said they are now ready to sign the paperwork.  I made an appointment for tomorrow, as that is what worked for our travel notary, but I cannot be there as I teach at homeschool co-op.  I asked if I could drop off the form for the doctor/notary, since my signature does not need to be on the form,  and they said that was fine.  Once David got there to drop off the paperwork, though, they had no clue what the paperwork was for once we dropped it off.  Sigh.  Please be praying it all works out and the paperwork is able to be signed and notarized tomorrow, since this is one of the last "big" things I need to do in order to complete the Dossier.

 

Thank you for following our journey and sharing in our excitement! 

 

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!!
 

Updates From Our Casa and Easter Picture Overload

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

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

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

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

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

 

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

The kiddos and David's parents

 



 

Cousins!

 

I finally got a smile from him :)

 

Looking beautiful in the purple dress she picked out

 

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

 

This boy loves his candy!

 

Bunny ears!

 

Holding cousin Solomon... such a sweet baby!

 

The girls with my dad, Papa

 

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

 

My brother, Uncle Tony, and Conner

 

Treats from Grammy and Papa

The Big Hunt

 

The Tethered Cord Verdict Is In.... Looking For Advice

Whew, what a day!

This morning we started our trek to Cardon Children's Hospital to meet with Dr. Moss, Madi's neurosurgeon.  He brought up her MRI and reviewed the results.  Her MRI showed significant tethering.  He basically said she was very significantly tethered and absolutely needed surgery.  Although I hate the idea of her going through another surgery, I was praying that it would be a very clear "yes" or "no" to surgery, and am thankful that it was.

Madi's Chiari II malformation looks good.  It's not pulled down too tight, it's not being too compressed, and he doesn't see any problems there.  Yeah! 

Madi has started developing a syrinx at the top of her spina cord, but it's very small, so he's not worried right now.  It's just something we will keep an eye on.  I'm so glad we don't need to deal with one more thing right now. 

In enters the curve ball, though, and this is the tough one.

Dr. Moss is going to try and clean up Madi's scar tissue by de-tethering her as much as he can.  He did tell me, though, he felt he might need to do an aggressive de-tethering.  What does an aggressive de-tethering look like, you ask?  Well, that's the part that is not so pretty.  The neurosurgeon actually goes in and removes the lower part of the spine, the part with nerves that do not function, below the area that does function, to be able to fully free the spine and fully de-tether/release it.  Yikes.  I am so hesitant to do something that is so permanent.  I mean, SO permanent.  On the other hand, though, if she is really significantly tethered, and he can't release her with out it, then we don't know if the surgery will be enough to help her.  Her left leg keeps getting tight, despite standing daily in HKFOs.  Her bladder was looking amazing, then got spastic and she had to have the vesicostomy, which is likely related to tethering, and now her scoliosis, which is for sure related to tethering.  If we chose not to be aggressive, and her scoliosis continues, we are looking at a rodding surgery, in which they will have to then do the aggressive release anyway, because it's the only way they can get the spine fully straight.  If we do the aggressive de-tethering, and one day some new advancement comes along, she wouldn't be a candidate any more.  Dr. Moss doesn't think anything huge is headed our way within the next 20 years, but who knows!  Either way, she will re-tether, but the aggressive surgery leads to less of a chance of needing another detethering surgery, where-as the non-aggressive route may lead to needing another de-tethering surgery, as well as a rodding surgery.  It's such a hard decision.  Not de-tethering aggressively could lead to life-long damage to her spine that cannot be reversed, but aggressively de-tethering takes away future options.  Bleh.  I also have a call in with the urologist to see how the aggressive or regular surgery will impact her bowls and bladder.  I bumped up our appointment with Dr. Segal, our orthopedic surgeon, so he can review her MRI and see how her spine/scoliosis looks in that, versus in the x-ray we took.

Dr. Moss said he won't know what he thinks we need to do until he gets in there.  At that time, he said he would call me (I'll be there, but in the waiting room, so he'd call me in the waiting room), tell me what it looks like, and I'd have to make the call.  I'd either tell him to go ahead with the aggressive detethering if that is what is needed, or to just do what he can and leave the rest, not doing the aggressive surgery. 

I really wish Madi was older and could make this choice for herself.  I really, really wish there were better treatment options, but as far as I know, there are none.  So, David and I have a lot of praying, researching, and talking to other parents that we need to do.  This is a big decision and I really want us to have peace about whatever path we take.  I don't want her to end up needing rods and other de-tethering surgeries, but I don't want to do something permanent either.  It's a lot to process!

Right now I am praying for wisdom and answers.  I'm praying that God will put the right people in our path to help us get direction on how to proceed.  I am also praying that she just plain will not need the aggressive surgery, which would be huge.  I am praying, above all else, that he will get in there and decide he can de-tether her sufficiently without being more aggressive.  Please, please join us for prayer!!

Hospital time will be about 3-5 days as she recovers.  She will have to be flat on her tummy for at least the first 2 days.  There is a good chance we will be in the ICU, but we are used to that.  In fact, I spent the first years of Madi's life not realizing we were always in the ICU.  First it was the NICU and then the PICU, but always the ICU.  Once we made it up to the 8th floor (for seizures), I realized there was such thing of hospital life outside of the ICU :).  Once we are home, she will have a few more weeks of down time before she can resume her regular activity, with either surgery.  Please be praying for quick healing and minimal pain for her.  I explained the surgery to her and asked if she had any questions and her questions were...

1- Will it hurt?  To which I answered that it might, and if so, she needed to tell momma and the nurse so we could get medicine and help her feel better.

2- Will the mask you put on me stink?  To which I answered, probably, sorry baby, but you can ask if they have one that smells better.

and

3- Will you hold my hand and sing me "twinkle twinkle", which I of course said yes to.

After that, she went off to play again.  As long as she knew the answers to those questions, she felt ok and didn't really worry.  Oh, and the good news is Dr. Moss said we are not in a hurry, so he is ok with waiting until preschool is over in May, so that is when we are looking to book the surgery.  It will likely be the 3rd or 4th week of May.  He also said he will request not to have the last anesthesiologist I had, and also wants to know his name so that he doesn't use him again. 

We are thinking of driving to California in April for a few days and going to LEGOLAND before the surgery.... kinda our last little "hurrah" for a while.  David is doing really well at work again (thank God!!!) and has his confidence (mostly) back, so we should be able to go.  We found one buy-an-adult-admission-get-a-kids-admission-free coupon, so we are hoping to find one more and only have to pay for two adults and one kiddo to get in.

That's all our news for now.  We appreciate your prayers and ask that you will keep sending them our way!