Now for the Medical Stuff

Overall, though we've had plenty of therapy and appointments, the kids are all doing well and are pretty stable medically, which is a HUGE blessing.  Here's a quick update for each kiddo:

• Conner:  Conner had been back in speech therapy for about 6 months to work on his r's.   He was motivated to get them down and just exited in December.  Because that was the final sound he needed, he should be completely done with speech therapy now.  We are all proud of him!  He's been in therapy on and off since he was about 4, so this was a big moment to celebrate.  He wanted to pick dinner, so of course that's what he got!

• Ramya:  Ramya has also been pretty stable medically.  She's needed some wheelchair adjustments and needed her AFO's lengthened (she's had her wheelchair about 4 years, and her AFOs about two, so I'm thankful she's finally grown a bit), and also has been continuing with vision therapy and attachment therapy, and we are also adding back in some cranial sacral work.  She has OT, PT, and speech too, of course, but those will be ongoing therapies.  We just did a routine renal ultrasound and she will need a full brain and spine MRI soon as well, just to see how things are going.  We are praying everything looks good there.  Ramya continues to make progress in homeschool and therapy, and we are proud of her!

• Deena:  My little feisty Deena is doing great.  We had a bit of a scare when her phosphorus came back low at her last infustion/blood draw.  The doctors started talking about rickets, which would be no fun and would just further complicate her bone development.  I upped her vitamin D, which was also low, then we re-tested her.  Her test came back within normal ranges.  She had another draw more recently, which showed that her counts have continued to improve.  We were so thankful for that!  She also has not had another break since her September one. during therapy  This is HUGE and another big thing to celebrate.  She had her first bone density scan, and though it showed a significant defect, the doctor said her scan looked better than she expected.  Yet another big praise!  Her bones are responding well to her Pamidronate infusions and she has gained so much strength.  She spends much of her day standing and practicing walking and is highly motivated, which shows.  She's progressing quickly in physical therapy as well, which is awesome.  She's doing really well!

• Madi:  Madi recently got an ALF (Advanced Light Force) appliance in at the dentist, and we are hopeful we will start seeing changes in her bite, jaw growth, tongue thrust, sleep, eating, and breathing soon.  She wasn't a big fan the first few days, but she doesn't even notice it's in her mouth any more.  She goes back monthly for adjustments and they are pretty quick.  Madi is continuing with vision therapy and has also added in some cranial sacral work, in addition to her weekly OT and PT.  She also just had a renal ultrasound and will have an MRI as well.  That's a long, complicated story that has consumed hours to figure out, which I'll touch on later, but it should all be completed soon.  Madi needed some hormonal testing done with endocrinology, which was not fun at all, but it's over with now, and we have the answers we need.  She's has had a huge growth spurt, again, and no longer fit in her wheelchair or RGOs.  Her RGOs are now in, though they are currently back in the shop for some adjustments, and she's so excited to be back up and standing.  Her new wheelchair should be here next month, which is also exciting news.  She works really hard and it's so fun watching her grow.

Me:  I know, I know, you never hear about my medical "stuff", but today you get to.  I am so very thankful to be healthy and be able to do what my kiddos need, and not have many updates in this area.  Last month I was diagnosed with SIBO (Small Intestinal Bacterial Overgrowth).  I have a minor case, thankfully, but it was the answer to some uncomfortable tummy issues I was having.  I was constantly bloated, puffy, and retaining water, no matter how healthy I ate and how many foods I cut out.  I'd wake up first thing in the morning feeling bloated and full.  You'd think I'd be skinny because eating hurt, but I love to eat, so that never stopped me.  I've been on my treatment plan for a little over a month now, and I've felt so much better.  I am not eating many foods, because of the phase I'm on, and am struggling to keep my daily calories high enough, but I'm trying really hard to keep my calories and energy up so I can do what I need to with the kiddos.  My doctor allowed coffee, as long as I drink the Bulletproof brand, and I am sooooo thankful for that.  I've been able to continue working out, though I feel my muscles get tired quicker than I like.  It's all worth it to heal, though, and feel better.  Some of my symptoms returned recently, though I haven't had any new foods or moved phases, so today I had just bone broth and no food to see if that would remedy it.  Sadly, I feel worse today than I did before.  I'm suppose to do just bone broth one more day, and then if that doesn't work, I'll go back on antibiotics for a few another round.  Though the process can be long and I miss a lot of my favorite foods (sweet potatoes, popcorn, quinoa, salads, and so much more), I'm at peace with the plan.  The most important thing I can do is take care of me so that I can be the mom I need to be, and that's exactly what I plan to do.  I'm thankful to have found a good naturopathic doctor who is willing to dig for answers and keep me running strong.

Other than that, life has been typically crazy and fun.  The girls are currently in dance and have a recital coming up in April.  They've had so much fun practicing.

David took the girls to the daddy-daughter dance at a local Church, and they had such a wonderful time with him.  Three years ago, Ramya and Madi were headed to the daddy-daughter dance at our homeschool co-op when Madi had a seizure and couldn't attend.  Ramya was able to go, which was really special for her, but Madi still talked about how sad she was to miss it and how much she wished she could have gone.  When I read about the dance, I signed the girls up right away.  I'm so thankful the girls have a daddy who loves them so much, and who cherishes spending time with them.  

We had good friends visit this weekend and stay with us, which was so much fun.  We went to ice cream twice (man did that ice cream look good), had pizza (even that looked good, and I gave up on pizza a long time ago because it always makes me feel sick), went to the zoo, and just enjoyed their company and conversation.  

 Last night I was able to meet up with a few of my favorite mom friends, who have been there since Conner and Madi were little, and who helped welcome Ramya and Deena home.  I've missed my friends.  We've always been blessed with such an amazing support group, and moving away was hard. Between having friends visit, and getting out with my friends, my heart is happy and filled.  

I think that's it for now!  I'll update once the girl's testing is done and we know more.  Have a blessed and joyful week!

Seizures Are No Fun!

Wednesday went a little different than we had planned.

We had friends over and we were making fermented pickles (http://www.myhumblekitchen.com/2013/07/a-simple-recipe-for-homemade-natural-fermented-pickles/).  The kiddos were having a blast playing together.  They played inside quite a while but then went outside to play. 

After our friends left I went outside to bring Madi in.  She wanted to tell me all about a grasshopper she had seen so we chatted a while.  Then she looked at me and threw up.  I thought she may be over-heated, so I took her inside to cool off.  I grabbed her seizure medication, just to be on the safe side, and headed to my room to rock her under the fan.  She was being her normal spunky self and was yelling at me telling me she didn't need her medicine.  While I was rocking her she fell asleep.  She woke up about 15-20 minutes later when Conner came in the room chatting, but threw up again.  After that she proceeded to do her repeated dry-heaving that usually indicates the start of a seizure.  I gave her one of her seizure rescue tabs to try and stop it ASAP.  She was still talkative, though she was becoming a little slower to respond.  She was NOT happy with me for giving her the medicine.  I am sure they taste terrible.  I watched her for a few minutes but the seizure was continuing to develop (she started staring off, not responding much, and her left leg had started rhythmically jerking).  I gave her a second rescue med and watched her again.  The second tab didn't stop the seizure either, and then her right arm started jerking rhythmically.  Our neurologist wants me calling 911 while giving the 3rd rescue med tab so that she can be evaluated by the paramedics and then be brought in to Phoenix Children's Hospital if needed so I called 911 while giving the 3rd tab.  When the fire department got to our house it was like she was trying to talk to me but couldn't, and she kept trying to reach out so I held her hand.  It was hard to see her like that.  They put oxygen on her and she finally fell asleep.  They were able to get an IV in her foot, which is always so nice.  I was so thankful!!  I handed her to David so I could change my shirt (I had lots of throw up on me), and then I grabbed my hospital bag and we headed out to the ambulance.  Madi slept the entire ambulance ride, and continued to sleep about another hour-and-a-half once we got to the hospital.  She woke up for about 30 minutes for testing, then went right back to sleep for almost another 2 hours.  It was a good thing she got to nap because we didn't get in to a room until almost midnight! 

The first thing we did at Phoenix Children's Hospital was check her shunt with an MRI and x-ray series, but everything looked good.  They thought there may have been a very, very, very slight increase in her ventricle size, but they said it was hard to tell because the MRIs cut through in different places.  They weren't worried but wanted to watch us overnight.  The ER doctor did note she had moderate stool back-up.  They said it could have been putting pressure on her shunt, which may be causing a slight increase in fluid.  The neurosurgeon (ours wasn't on call so we saw someone else) didn't seem to think that was the cause, though, as there wasn't too much build-up.  I am cleaning her out just in case, though.

The ER doctor thought that her electrolytes might have been imbalanced since she had been outside, but her levels came back fine.  Her Keppra level was pretty low, which they thought may be from throwing up.  They decided to give her some IV keppra to make sure she kept it down and got her levels up.  They also increased her dosage from 6 mg 2 x a day to 6.5 mg 2 x a day.   

We went home Thursday after Dr. Shafron, our neurosurgeon, got to see Madi.  He didn't want us to go home before he got to evaluate Madi himself.  Though it was hard waiting until his clinic day was over, I do really appreciate that he cares about Madi and wanted to take the time to evaluate her himself.

Thursday  night we relaxed and went to bed early.  We both appreciated the good night's sleep!  Madi is now back to her normal fun and spunky self, and I am so thankful!  I'm praying this change in dosage, as well as the extra keppra she got, will keep her seizures away.  I'm a little freaked out because she has only had one other day-time seizure.  The majority of her seizures are when she is coming in or out of sleep.  It was almost reassuring having them at night or early morning, because I am always there during those times, so I never worried about seizures happening for other people (like on one of our occasional date nights or at Church).  The fact that it happened in the middle of the day has me worried.  Please pray that this trend does not continue!

Thanks for those of you who were praying for my sweet girl and who texted to check in on her.  We really appreciate it!


 

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!!
 

Our Neurosurgeon Report from Today

Today we had a neurosurgeon appointment down at Cardon Children's Hospital with Dr. Moss.  We reviewed Ramya's MRI scan from 6 months ago (endocrinology wanted a sedated MRI due to her early puberty, so we had Dr. Moss send in orders for a full spina MRI so that we could coordinate, even though we didn't need the MRI quite yet.  It's always nice to have one instead of two!!).  Ramya's spine is tethered, as we would expect since she has had spinal surgery, but because she is not symptomatic we are not looking at doing surgery to release it.  She has a Chiari II malformation as well, as we expected, but fluid is able to flow around it (her brain stem ;)), and she doesn't have any chiari symptoms, so we are not going to do anything in that area either.  Her pituitary gland looks like something is putting pressure on it, but she does not have any cysts and the fluid levels in her ventricles look good, so he's not quite sure why.  It may be the reason she started going in to early puberty, but there is really no way to know.  So basically, lots of things we expected and nothing that we didn't, no need for surgery, and we don't need another appointment for a year, so I count that as a win!  Yeah!

After the neurosurgeon we grabbed a quick lunch at Chipotle and headed over to our naturopathic doctor, Dr. Vitaro, to discuss the results of some blood tests I had done.  I have a family history of thyroid problems and we felt it was a good idea just to keep an eye on my thyroid.  My overall thyroid level looks good, but when you break it down, I do have an area that is below the "normal" range.  I'm going to start taking a natural thyroid supplement to try and keep my thyroid healthy, as well as hopefully boost up my numbers.  He also tested me for any possible underlying autoimmune disorders, since that can effect the thyroid.  Everything came back negative, so I have nothing underlying going on, which is great!  My only real thyroid symptom is that losing weight takes a lot (I mean lot!) of work for me.  Part of that is the fact that I've had kids, part of that is the fact that I was addicted to graham crackers and milk when I was pregnant with Madi, part of it is the fact that I like food, then of course there's the fact that I'm 32 and my metabolism is slowing down.  Oh, then there is that whole working out thing, and the fact that I haven't consistently worked out in a long time.  All of those combined makes it tough!  I've been eating really, really well the past few months (very little fruit (I actually had none the first month, but now have a piece a day), only quinoa and millet for occasional grains, lean organic meats, and lots and lots of veggies and some nuts... I've basically been following the candida diet), and have lost a little weight, but am having a hard time getting below my current weight.  I've been hovering around this number for quite a while.  I just started yoga and I am hoping that will help.  I'm starting to feel healthier, which is my goal, and for that, I am thankful!

On a totally unrelated topic, next week is Madi's last week of preschool.  The following week is actually the last week, but we will be in Boston getting a second opinion on surgery, so next week is her last week.  The teacher is letting me come in next Friday to do a few fun things with the kids to celebrate.  I can't believe the school year is almost over for her.  Next year she will officially be a homeschooling kindergartener!  I can't wait!!

Please be praying for our upcoming trip to Boston.  We are praying that we get answers on HOW to proceed with Madi's detethering surgery.  Thank you for your love and prayers!

 

MRI, Check!

This morning Madi and I left at 8:00 to go to Cardon Children's Hospital for her MRI to check for tethering.  The were scanning her head as well as her full spine.  We got to Cardons to check in at right about 9:00, which was a little early (make a note of that... we are never early!!).  They took us back pretty fast, and we were able to start the scan a little early, at about 9:45.  At first the anesthesiologist said I couldn't go back with her.  He said he doesn't like to divide his time and it would take attention away from her.  I assured him that I would stay out of the way and would not ask questions.  I told him I knew what to expect and that I had gone in many times before, even for surgeries.  He told me he has some moms trying to interfere or fainting.  I assured him that would not be me.  I also told him Dr. Moss had promised me I could go back.  He didn't love it, but he did decide to let me back.  I was thinking we were just going to have to leave and re-schedule with a different anesthesiologist, so thank God he changed his mind!  I held Madi's hand and sang to her while she fell asleep.  After one "Twinkle Twinkle" she was out.

They said the can could take as long as 4 hours, though I knew it would be less.  It ended up taking right about 2 1/2 hours.  They came and got me while she was still sleeping, and we let her sleep until she woke up on her own so that she would wake up peacefully.

 

 



When Madi woke up she was a little cranky and a little groggy but not too bad.  They were able to get the IV in her foot (yeah!) so that wasn't bothering her.  The only thing she was upset about was her thumb.  Having the pulse-ox monitor on her thumb and then having her thumb in the same spot for so long had caused a loss of blood flow.  Her thumb was a little purply and puffy.  They tried getting ice for it, but she didn't want it. 

After giving her a few minutes (and some water... she said no to a snack) they discharged us and sent us upstairs for an x-ray.  Madi has a programmable VP shunt, which gets programmed by a strong magnet.  Because the MRI machine is essentially a large magnet, it can re-set the level the shunt is set at.  We had to wait quite a bit, but then they called us back.  Right about the time we stood up, Madi looked at me and threw up all over myself and herself.  Poor baby.  We had skipped anti-nausea medicine because she said her tummy didn't hurt and she didn't want it, but we should have given it to her.  After throwing up, she felt much, much better and was back to her old self.  After the x-ray I took her to the cafeteria to eat.  It was almost 3:00 by then and she hadn't eaten all day!  She picked a hot dog with no bun, French fries, and chocolate soy milk.  She was very happy to eat and was able to keep her food down just fine.

We finally left there and made it home right about 4:00pm.  It was a long day!  Now we're getting ready to eat dinner and watch a family movie.  Relaxing just sounds good right now!

We won't see Dr. Moss until next week as he is out of office this week.  I will update everyone with results once we have them.  Thank you so much for your prayers, I know God was watching out for her!  Please pray that we get clear tests results and for wisdom, discernment, and clear direction for Dr. Moss, as well as for David and I. 

So Frusted Today!!! Canceled MRI....

Well, today did not go like I planned!

At 4:25 today I got a call from Banner Cardon Hospital.  They were not able to get prior authorization from Madi's secondary insurance APIPA/CRS for tomorrow's MRI.  After doing some research I discovered that it's because CRS (the medical clinic Madi goes to for her appointments), who actually are the ones who put in for the MRI, put Madi's diagnosis as hydrocephalus.  APIPA/CRS wouldn't authorize it because her diagnosis was listed as hydrocephalus.  While Madi does, of course, have hydrocephalus, her main diagnoses are spina bifida (which IS what is covered by APIPA/CRS), Chiari II malformation, hydrocephalus, and epilepsy.  They do not see patients at CRS based on the diagnosis of hydrocephalus alone, nor does the insurance plan cover kids based on hydrocephalus alone.  Of course, they waited until most offices were already closed to call me, so now I can't get it figured out today.  I was able to get ahold of Dr. Moss's nurse, who said she would make some phone calls and get back to me, but at this point, it's 6:00 and I still haven't heard back, so I am guessing she couldn't get ahold of anyone and went home.  Though I know there must be a reason we are not going in tomorrow, and I trust in God's plan, I am just feeling frustrated with all of the fighting and miscommunication.  There is always a phone call to make, an office to talk to, something to fight for.  I am also dealing with trying to get Ramya her next Lupron Depot Pediatric shot (another long story) and am trying to fight to get Madi's Rifton Mobile Stander approved by insurance (another long story again), as she really needs a size medium.  I love my kids, and I will continue to fight so they can get what they need, but sometimes, it just makes me tired.  I also do a lot of prep work for appointments and scans, coordinating child care, shopping so I can plan diet-specific meals while I am away, preparing for the worst-case-scenarios just in case, cleaning the house so grandparents can come watch the kids, and all of that fun stuff.  I am so thankful for the energy and drive that God gives me, because that is what keeps me running this race!

I'll update everyone once we get another date set.  Thank you for keeping Madi and our family in your prayers, and please keep it up!

But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

- Isaiah 40:31

 

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!!

Ramya's MRI Went Well

A big "thank you" to everyone who prayed for Ramya today.  Though an MRI is not a big procedure, undergoing sedation is never fun on a little one, and looking at those big machines can be scary. 

We got to Phoenix Children's Hospital (PCH) right about on time, at 6:00 a.m..  We were taken back about 5 minutes early and Ramya was prepped.  The MRI started at about 7:10 and lasted a little over an hour and a half.  I had prayed for a wonderful anesthesiologist, as I found that makes a big difference, and God gave us one for sure.  He was very understanding and made sure that I was there to make her comfortable while she was falling asleep.  Ramya was not too happy when the anesthesiologist tried to hold the mask to her face, so I held it instead while I held her hand.  I also sang to her to help calm her, which worked like a charm.  She was out before my first round of "Twinkle Twinkle" (her requested song) was over. 

When I had told the anesthesiologist I wanted to be there when she was waking up, he told me he thinks it's so much easier and less confusing on kiddos to have their parents there when they wake up.  I totally agree and wish all anesthesiologists agreed, because I've had to argue with them more than once!  After the procedure,they brought me to see her.  I got there when she was just starting to wake up but was still very out of it and hadn't opened her eyes yet.  After she started coming out of it, she cried quite a bit, and I just held her.  Once she fully came out of it I gave her apple juice and then she felt much better! They were able to start her IV in her foot after she was asleep from the gas, and I was so thankful for that (she needed contrast for the MRI).  It didn't bother her one bit when they took it out, which I was very happy about.

After the MRI we headed upstairs to visit a friend and her sweet baby who are at PCH right now.  Jemma is a week old and will have her first of many major heart surgeries some time early this week.  Please keep this beautiful little blessing in your prayers.  Please also pray for strength, endurance, and wisdom for her momma, who is there staying with her. 

After visiting, we headed home.  Ramya was very excited to be reuniting with Conner, David, and Madi.  She said she missed them at least 10 times while we were gone.  Tonight she was helping me set the table and I told her we needed 5 forks because we have 5 people in our family.  Then I asked her who was in our family, and she shouted, I AM!  Yes you are, sweet girl; always and forever!  I am so thankful that Ramya is home with us now and that I'm finally able to be there to hold her when she is upset and soothe her during her procedures.  It's a blessing to be her momma!

We're hoooooooooooooome

We are officially home from the MRI and Madi did really well.  I felt so bad because she had to go NPO and kept signing to me that she wanted to eat, but overall, she did great.  I held her as they put on the gas mask and she fell asleep.  I was supposed to be there when she woke, but she woke up about 30 seconds too early and really mad that momma wasn't there.  A little milk and she was a much happier baby.  She has decided naps are for wimps and won't nap today, but she's happy and playing and that's all that matters!  Tuesday we see Dr. Moss and I will have an update as far as if she has a tethered cord or not, and if so, how we will procede.  Thank you for your prayers today and please keep sending them our way!

Tomorrow is the big MRI day!

Conner loves his sister very much!  She is lucky to have such a kind and loving brother!

Tomorrow is Madi's big MRI to check and see if she has a tethered cord.  Please keep her in your prayers.  She will be under anesthesia, which I hate, but I don't want her to be scared either, so I know it's a good thing.  It should take about 45 minutes for the actual scan, but we are supposed to get there an hour early, and I am not sure if they will keep us for a while afterwards.  Her scan is at 11:30 at Phoenix Children's Hospital.  We then see Dr. Moss next Tuesday and he will tell us how to procede, or if there is even a problem.  I am praying her cord is not tethered, but if it is, then I know that's in God's plan.  I will update you all as soon as I know something.  Have a blessed rest of the week!

Please keep Madi in your prayers....

Conner took this picture of Madi and I.  He's quite the little photographer!

I think I posted before that Madi's renal reflux went from a level 2 to a level 5.  That is pretty much the reason that we are cathing her now.  One reason for the change could be tethered cord, which is essentially where the nerves grow in to the scar tissue, causing problems as the child grows.  Here's a great explanation:

http://www.spineuniverse.com/conditions/spina-bifida/spina-bifida-tethered-spinal-cord

At birth, the spinal cord is normally located opposite the disc between the first and second lumbar vertebrae in the upper part of the lower back. In a baby with spina bifida, the spinal cord is still attached to the surrounding skin, preventing it from ascending normally, so the spinal cord is low-lying or tethered. Although the skin is separated and closed at birth, the spinal cord stays in the same location after the closure. As the child continues to grow, the spinal cord can become stretched, causing damage and interfering with the blood supply to the spinal cord. This can result in back pain, leg pain, changes in leg strength, progressive or repeated muscle contractions, orthopedic deformities of the legs and scoliosis, and bowel and bladder problems. A definitive diagnosis of a tethered spinal cord is made through diagnostic tests.

The shunt is checked through a computed tomography (CT or CAT scan) or magnetic resonance imaging (MRI). In some cases, the shunt is tapped to assess shunt function. If there is any question about shunt function, the neurosurgeon may explore or revise the shunt, before considering operating on the spinal cord.
If the shunt is working well, usually an MRI of the spine is done to exclude other problems. Additional studies such as a Manual Muscle Test (MMT) and special bladder studies (urodynamics) may be prescribed. These will be compared with prior studies to assess changes and to give a baseline against which to compare after the surgery. Untethering is generally performed only if there are clinical signs or symptoms of deterioration.


The surgery involves opening the scar from the prior closure down to the covering (dura) over the myelomeningocele. Sometimes a small portion of the bony vertebrae (the laminae) are removed to obtain better exposure or to decompress the spinal cord. The dura is then opened, and the spinal cord and myelomeningocele are gently dissected away from the scarred attachments to the surrounding dura. Once the myelomeningocele is freed from all its scarred attachments, the dura and the wound are closed.


The child usually can resume normal activities within a few weeks. Recovery of lost muscle and bladder function depends upon the degree and length of preoperative implications. The combined complication rate of this surgery is usually only 1 to 2 percent. Complications include infection, bleeding, damage to the spinal cord or myelomeningocele, which may result in decreased muscle strength or bladder or bowel function. Many children require only one untethering procedure. However, since symptoms of tethering can occur during periods of growth, 10 to 20 percent require repeated surgery.



Although having a tethered cord (Basically, all children who have Madi's form of SB do have tethered cord, it's just not always problematic) would give us answers to why her bladder problems are worsening, it's not a good answer, because it means a yucky surgery and hospital time.  Though I would love to know why her bladder condition is getting worse, I'd also hate to see her undergo yet ANOTHER surgery and more anesthesia, so I'd really hate for it to be tethered cord.  We go in for a full spinal MRI on Wednesday at 10:30.  Madi will go NPO earlier that morning and will have to be sedated (put under anesthesia) for the MRI because it is a long 45 minute one.  They will let me be in the room while she is put under, then again when she is woken up, but I will not be able to be in the MRI room (though I plan to try and push for it again) during the procedure.  I hate that they have to put her under for it.  When they are doing a 'big bang' MRI to check her shunt, they allow me to go in the MRI machine with her.  Because this one is so much longer, though, and they have to do anesthesia, that will not be a possibility.  I am really sad about that, but it is what it is.  We then have an appointment with Dr. Moss, her neurosurgeon, on the following Tuesday to discuss the results.  I need to call and see if we will be going straight to surgery that day if it is tethered, and if I need to pack and prepare for that, or if we schedule surgery, go home, and come back.  Please keep our little Madi in your prayers this week.  We will keep everyone updated.

Such great news today!!

Though it is too easy to say when things are going well, GOD IS GOOD! All the time! We went for a routine MRI today, as well as a routine neurosurgeon appointment. The MRI went smoothly. They allowed me to get in the MRI machine with Madi so that they did not have to sedate her. I rubber her little soft face and sang to her while they did what the call a "big bang MRI", which only takes about 5 minutes. It was a bit eery feeling to be crammed in such a small, enclosed space, but I was thankful to be there! Madi did great because she knew momma was right there with her the whole time. She wasn't a huge fan of the ear plugs or the fact that she could not move her arms, but she really did great! I got a little nervous for the appointment because Mary, Dr. Moss's nurse practitioner said she would look at the MRI and be back, but kept not coming back. I was starting to get worried, especially considering we are supposed to be on a plate today to head to disneyland. She said there is more fluid in the left side, just like there was before, but things looked good. The reason it took so long is because she called Dr. Shaffron and had him compare her old MRI to her current one. Things looked pretty much exactly the same. THANK YOU GOD!! Then she said the most amazing thing..... we will see you in 6 months! Now, for some people, 6 months might not sound like a big thing, but to us it is HUGE. We had a very rough start with shunt problems and within the first 2 months had spent about 1 month in the hospital. Those were some very rough times. For now, things look great, and I couldn't be more thankful. We're taking it one day at a time.