A Few Quick Updates Because SO Much is Happening

I just realized it's been quite a while since I have updated on how life is going.  There's a lot to share, so I think I'll break it down by kiddo to make it easier.  

Madi:

On Monday Madi saw a new neurologist in Tucson.  So far I think I like him, we shall see.  He wants to do a sleep-deprived EEG and see how her neurons are firing and all of that good stuff.  Her appointment is in in May and the goal is to limit her sleep as much as we can for one day (4-5 hours if possible) so they can get the best EEG readings.  She can't have caffeine before the test, but you can bet I'll have quite a bit!!  After the test he wants to discuss possibly changing her medication or combining two medications to try and get her seizures more under control.  She doesn't have them often, but when she does they are big and require a lot of intervention.  

Madi and Ramya's new DDD coordinator came out today and we really liked her.  She had read our blog and was excited to meet the girls.  She gave me a list of occupational, physical, and speech therapists in Tucson so that I can start calling around and find services for both girls.  That's my next job over the next few weeks.  

Other than that, Madi has been talking about wanting to be on stage again, so I need to start looking for a place in Tucson that offers dance or plays she can participate in.


Ramya:

A friend who was adopting from India at the same time we were shared that her daughter tested positive for E Pylori.  I read about it and decided I should have Deena and Ramya tested.  I asked their pediatrician if we could run the test and he agreed.  Deena's test came back negative, but Ramya's came back positive.  The doctor said treating it likely won't make any short-term changes, but that we should treat it to make sure she doesn't get ulcers or have issues in the future.  Reading online I found that it's not usually symptomatic, however, when it is the symptoms (according to Dr. Google ;)) can include:

• excessive burping
• feeling bloated
• nasea or vomiting
• lack of appetite or anorexia
• unexplained weight loss

It may be nothing, but I'm hoping treating her may help bring up her appetite and weight.  We have had swallow studies, feeding evaluations, parasite tests, etc... and never came back with any answers as to why she may struggling with having a desire to eat and poor weight gain.  Everyone tells me it is emotional, which is one reason why we were having attachment therapy.  I'm praying that this may may provide some answers for us and help make her healthier.  The initial treatment would be 4 weeks and then we would re-test and see how she is doing.

Deena:

A few weeks back Deena had her first "incident" since being home.  The kiddos were riding their plasma cars and Ramya slammed in to Deena, causing Deena's leg to hit the wall.  She started crying and telling me "mom, so much pain!".  It was so sad!  I splinted her right away and then she felt a ton better.  After that her leg only hurt if it moved in a funny way, and she really didn't complain about it any more.  I took her back to the orthopedic surgeon who thinks it may been a new break.  Looking at her x-ray from December in India, though, she had a break in the spot already that she had come home with.  The pediatrician thinks she just re-injured the existing break, but our next follow up with the orthopedic surgeon isn't until next week so I am not sure his opinion yet.  He wasn't looking at the old x-ray to compare the new x-ray to, so I plan to bring that for him.  Either way she said it doesn't hurt anymore and she has been putting weight on it again, so that's great!

Last week we drove in to Phoenix and Deena had her first appointment with our pediatrician.  He had told us she would always be in pain, and was pleasantly surprised to see her so happy and doing well.  She charmed him with her silliness and I could tell he thought she was pretty special (which of course she is!).  

Deena sees our endocrinologist later this month so we can start her infusions.  We are also starting the discussion of rodding surgery and we are praying about which doctor to use for the surgery and the best type of surgery for her.  

Deena still is not on our insurance.  I was told we were approved and in the final stages of rate determination, and then haven't heard back.  I need to call again and hope she will be on soon.  I also applied for CRS (children's rehabilitative services) for her to help with doctor's bills in the meantime.  Hopefully we will hear back from both soon.  The orthopedic surgeon wrote her a prescription for a wheelchair.  We do not want to start the process, though, until she is on our insurance.  We saved Madi's last wheelchair for Deena, though, so once we have a big enough vehicle, she can start using that while we wait.

Conner:

Poor Conner was sick last weekend; the sickest I have every seen him.  I started dosing him up with elderberry, vitamin C, zinc, and garlic.  He threw up twice on Saturday and didn't feel well.  He slept most of the day on Sunday, had a low-grade fever, and kept complaining of pressure behind his eyes.  I planned to take him to the pediatrician on Monday but he woke up his normal energetic self and I was so thankful! 

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In other news, Athletes Helping Athletes not only gifted Madi and Ramya AMAZING hand cycles, but they also asked to feature them in their promotional materials this year.  Of course we said yes!  Monday we had their program manager, photographer, videographer, and assistants here.  It was SO much fun!!  More to come on that later, though, because I really wanted to dedicate an entire post to our day and their organization.  

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Our house finally sold and closed this Thursday.  We both have mixed emotions about the sale, but are thankful that we are all in one place now and that all of our "stuff" is finally in one place as well.  It was stressful having it pending, going back and forth so much between Tucson and Phoenix, and then packing it up with 4 kids in tow, so we are glad to move past that phase of our lives.

 When we initially put the house up for sale we had dreams of renting for a while, saving, and then being able to build the girls an accessible house.  Plans changed when David's boss asked us to relocate, our adoption finally went through, and the house took longer to sell than anticipated.  Now we are here in Tucson and both our house and lot are sold.  We are working hard on trusting that God has a plan, though, and are looking forward to watching it unfold.  David is enjoying working closely with his boss and feels like it was a good move for him, which I am thankful for.  We are also VERY excited to be able to get a bigger vehicle so that Deena can start using a wheelchair.  I think the plan right now is to look for a conversion van with double opening doors that will fit all the kiddos and the three chairs.  We are hoping to find something soon!

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I think those are all of the "big" updates for now.  Deena is such a sweet girl and is adjusting remarkably well.  She went with David to pick up coffee the other day, which was her first trip away without momma.  She was very proud of herself and her time with David.  It was so sweet!  She kept talking about how funny daddy is, and all the silly animal noises he makes.  

We are blessed indeed!!

Neuro, Uro, and Thankful for a Crappy Day

Whew, what a week!

I know I say that often, but it just seems to describe this week so well.

Tuesday we had an appointment with our neurosurgeon, Dr. Shafron, as a follow up from Madi's last seizure.  The ER had mentioned Madi's right ventricles were slightly larger.  I told them that she is shunted on the left so they always are, but they wanted me to follow up with neuro and just make sure there were no changes.  Dr. Shafron compared the images from the ER to her last images and her ventricle size looked identical.  Yeah for a well-functioning shunt!  I remember when she was tiny and she was flying through shunts.  I felt like that would be our life forever.  It's now been over 6 years with this same shunt!  6 years!!!!!

Thursday the girls had appointments for renal ultrasounds and a follow-up with our urologist, Dr. Zuniga.  They had a really hard time finding Madi's left kidney, and they aren't exactly sure they even found it.  Madi has a super kidney (her right one) that performs as well as 2 kidneys.  Her left kidney doesn't really work at all, though.  They think it may be shrinking/shriveling, which they said is typical.  Her right kidney continues to look great, though, so we are thankful for that.  Her bladder is also looking good.  Ramya's tests all came back great as well, so that was good news!  We eventually need to consider surgery for the girls to help with urinary and bowel things, but I told the doctor I would prefer to wait until after our adoption goes through and we re-settle as a family since both girls are doing well (they just can't get out of diapers/pull-ups at this point, which I know eventually they will want to do).  He agreed that was a good plan, so for now we wait.  He also answered a few "boy" questions I had about Conner and put my mind at ease, which was very much appreciated.

Now on to our crappy day that I am actually quite thankful for....

Today we had homeschool co-op and we had a blast like always.  Conner takes Mini-Mozart, which is an acting type class for kids.  He also takes What's Bugging You, which is a class that teaches them about, well, you guessed it, bugs.  He really loves both!  I teach the class the girls are in and usually pick a topic to learn about and then we have activity centers to work through related to the topic.  We also have music and PE class during that time.  We learned about polar animals and did a lot of fun activities.  The girls really enjoyed it.  After we left and got to the car is when the fun started.  Sweet Madi unlocked her wheels (she's very independent and knows how to lock and unlock them and usually uses them appropriately), unstrapped herself, and reached over to grab something.  That's when her wheelchair went flying backwards in to the parking lot and she went flying forwards, belly first, on to the asphalt.  She was scared but somehow was completely unscathed.  Not even a scratch!  There were many tears shed, but she told me she was crying because she was scared, not because she was hurt.  Thank God!  I'm so glad she wasn't hurt.  We talked about why we need to make a different choice next time and I know she learned a good lesson.

Next we had an appointment with our naturopathic doctor for a blood draw so we started to head that way.  Before I get to that part, though, here's a little back-story.....

Unfortunately this blood draw had been a really frustrating situation for all of us.  A few weeks ago the neurologist asked me to get a draw for her to check her keppra levels.  Since we had to do the draw anyhow and she wasn't due for any other labs, we decided to check anything we could and he also included folate levels, b 12, amino acids, thyroid, homocystine, and a few more.  I made an appointment at our pediatrician's office since they do draws all the time and I figured they would be the best with kids.  They did a great job on the draw and got her on the first try and were done quickly.  Unfortunately, though, somehow when they were transferring the neurologist's orders over to their paperwork, they left off the most important test... her keppra levels.  When I got the call that her results were ready I sent David by to get them.  When he got home I realized that the level was missing but the office was already closed and I couldn't call.  I called first thing Monday and after many conversations with our neurologist's nurse, Sonora Quest Labs, and our pediatrician's office, we realized what the error was but it was too late to do another test from that sample.  I had the neurologist write up another test form for us, including white blood cell count this time as well, and made an appointment with our naturopathic doctor this time for the draw so that I could also get a food allergy panel run at the same time.  I had tried to have it run with the first round of blood tests, but because it was an outside lab they wouldn't do it for me.  I figured we would at least get to kill two birds with one stone.  Now back to my previous story...

On the way to our naturopathic doctor's office we were all getting hungry and decided to stop at Whole Foods for lunch.  It was raining, though, and the traffic wasn't great.  As I was exiting the ramp I almost got rear-ended.  Almost.  I am so, so thankful for that almost in there.  God really protected us!  While we were shopping for our lunch I got a call that our new physical therapist (such a long story there but Tami, our amazing PT, was no longer contracted with our insurance so we had to switch.  We found Kelly after a few months of self-pay appointments with Tami and lots of phone calls.  We've had her a few months and really loved her) was no longer with the company and they had no other therapists for us at this time.  GAH!  It took me so long to find her and she was great with the girls.  We are so so bummed to be losing her, especially so soon.  I texted her to see if we can follow her to her next office but she's not sure at this time where she's headed.  Here's the good news, though.  The last few times Tami had worked with the girls she decided to bill our secondary, fully expecting them to deny her, since she was no longer contracted with them.  Instead, they paid!  We aren't sure if this will last, but for now, we can continue to work with Tami until we find another PT.  Even though we are bummed it's amazing how God has worked out all the details.  I also ran in to two friends at Whole Foods, so that helped soften the blow.  A hug from a friend just goes a long way!

After we got our lunch we headed to the office.  Dr. Vitaro was great with Madi, but unfortunately he couldn't get a draw on the first try and there was just no way she was letting him try again. She was pretty upset.  There were more tears shed.  The doctor felt really bad, and I felt bad that he felt bad.  I had just got done telling him how I was really frustrated at the other office for messing up her labs, but new it was a mistake and was trying not to be upset, and then he couldn't get a draw from her.  It was just a bummer.  I decided to just forget the allergy test for now and make an appointment to go back to the pediatrician's office for the draw since she can be a hard poke and they can get her on the first try.  That appointment is Monday, so I am praying like mad that Madi will do ok during the draw.  She was upset during the last one , which she also thought would be the last one, and I really pray she doesn't have anxiety about the appointment and that it goes smoothly.  Hey, third time's the charm, right??? 

On the way home Ramya apparently still had some gluten-free pizza crust left (that girl can really hold on to food forever!!) and gave it to Madi.  We were on the freeway and I heard her start to choke.  She cleared it quickly (thank God) but she started making her "I'm going to puke" face that she gets any time she gags.  I pulled off the road quickly to give her water and help her but she was fine thankfully.  Again, I am SO thankful for protection for her.  I know I sound like a broken record, but really, I am! 

Whew!!  Once we got home the rest of the evening went well.  We went out to dinner with David's grandparents to celebrate his grandfather's birthday and enjoyed spending time with them.  After the kiddos went to bed David and I finished watching a movie together and it was nice to just relax.  I'm thankful that tomorrow is a new day and I'm looking forward to Madi and Ramya's dance class and then working a bit in our garden.  We also have a family movie and some relaxing time planned. 

Though this week was busy with appointments, therapy, and homeschool, we had lots of fun times in between that I am thankful for.  I think these pictures speak for themselves and just how blessed we are...

(Relaxing and eating lunch after our urology appointment Thursday.  It was a BEAUTIFUL day out!)

 

 

Working on our garden...

 

 

Dressing up for silly photos at the Ice Cream Social at Madi's old preschool, Stepping Stones...

 

 

 

 

Relaxing foot soaks in momma's foot tub.  Madi said she couldn't feel it but was pretty sure it felt amazing.  She cracks me up!  She did also put her hands in it so she could feel the warm bubbles.

 

 

 

New HFKOs, Brand-Name Keppra, and a Flooded Car.... YEAH

Today was quite the day!

It started with me waking up to David describing how he drove to get an iced coffee but ended up stranded in a parking lot instead.  It was pouring down rain and had been for hours.  There was major flooding and the roads where terrible.  He was in the grocery store parking lot, but couldn't see well because it was 4:30 am and dark, and accidently went into a deep drainage area in the parking lot.  His car stalled.  There was smoke.  He couldn't get it to start back up.  He tried to push it by himself but it wasn't budging, so he locked it up, turned on his hazard lights, left it there, and walked home.  It was not in a parking spot and was kind of in the middle of the driving lane, but there was nothing else he could do.  My sweet hubby didn't want to make me come get him at 4:30 in the morning, since I would have to drag the kids out of bed, and we live pretty close to the store, so he just walked.  I am not sure why he didn't call my dad, but apparently he enjoyed the walk, and as an added bonus, he got a shower too!  After that he was crazy busy at work and couldn't leave while I was still there, and then we had to leave for an appointment downtown, so it sat for a while.  We were afraid it was going to get towed so later in the day our very kind neighbor, Jerry, took David to his car and helped him push it out of the way and in to a parking spot.  After I got home we called a tow truck to take it to our mechanic.  Unfortunately water got in the motor so we are praying there is minimal damage.

 

 

On the plus side, Conner loved "building dams" after the rain died down.

 



 

 

Today both girls had an appointment with Ron at Hanger to get their HKFOs fitting them.  The downtown area was flooded, and of course that is where we were headed, so my dad came with us to make sure we were safe.  I am pretty spoiled with an amazing dad who loves us very much!!  It was also nice to have an extra set of hands since I had so much cargo to haul.  It turns out Madi needed brand new HKFOs so she got casted for them.  We should get the new HKFOs in about a week.  She wasn't sure if she wanted "a zillion Scooby-Doo's" or just plain pink, but decided on just plain pink.  She did a great job being patient while Ron casted her.

 

 

(Ron was a great sport and let Madi measure him :))

 

(Conner was a great sport as well and baby-sat Madi's new tiger for her while she got casted (yes, that is a glove she drew on ;))

 

 

 

Next up came Ramya.  The great news is she has GROWN and her HKFOs finally needed an adjustment!  Yeah!  He made them 1/2 inch taller and also widened the back portion a bit.  She did great with waiting as well and we were able to take them home fitting, which was wonderful.

 

 

 

On the way home we stopped at Urban Bakery and the kids got gluten-free vegan donuts.  They had been really good for the appointment, which was a few hours long, so I wanted to surprise them and get them a little treat.  My dad stayed in the car with them and I ran in and picked out a few.  I got my dad a few cupcakes too, because there has to be some perk for helping me wrangle 3 kids.  Ramya didn't want hers (I will never understand how a kid can say no to sweets!  I even got her favorite kind... vanilla with icing), but Conner and Madi gobbled them down very happily. 

 

 

 

 

We were also able to pick up Madi's brand-name Keppra today... YEAH!!  I am really praying this helps with her rashes.  There's some back-story on getting the medication, but it was not too bad!!  On Thursday we headed out to see The Rugrats Live with the kiddos.  I had forgotten my phone but decided not to go back for it because I thought it was too late in the day for calls from the doctor.  Of course I came home and realized I had missed a call from our neurologist at 7:45.  I was bummed!!  I called the next day, Friday, but couldn't get ahold of him.  His nurse said he had made notes in the file stating he had called our pharmacy and they were working towards getting the brand-name keppra approved.  The nurse suggested we talk to the pharmacy to verify.  The pharmacy said they did not have a record of this, but talked to George, the main pharmacist who thankfully loves our kiddos, and always remembers us, and he got right on getting it approved and processed.  He called the neurologist office, called me back when he couldn't get through to ask me the best way to get ahold of our neurologist, called again his office again, and then left a message with Dr. Condie's nurse.  He called me back after that and told me he hadn't been able to reach them but would order the brand-name for Madi anyway and figure the rest out later.  Thankfully the nurse called him back shortly after that and sent him a prescription for brand-name keppra, so he ran it through insurance to make sure he didn't need to call them as well, and then called us back and let us know it was all taken care of and our prescription would be ready Monday.  I'm thankful it all worked out and getting it was relatively painless!!

 

 

Next on this week's to-do list is picking up Ramya's glasses, setting up a hearing evaluation, calling to see where we stand with getting Madi oxygen to use during seizures, getting some blood tests done (the MTHFR mutation test for me, and food (IgG and IgE) for Ramya and Conner), homeschool co-op, OT, PT, and the play Charolette's Web.  Oh, and I am getting a teeth cleaning.  It will all be worth it though because we go out of town next week for vacation... woooo hooo!





 

 

 

 

 

Appointments Galore.... Ophthalmology and Neurology

Last week I brought Ramya to an optometrist/ vision therapy specialist who works with kiddos needing vision therapy, specialized glasses, etc...  Ramya's left eye looked slightly off in the photos we would receive from India, but I hadn't really noticed any problems after she had been home for a short time.  I did notice, though, that she had a hard time at midline  (which can be common with kiddos that have spina bifida), had a hard time with tracking, complained of her eyes bothering her sometimes, and I still wasn't sure her glasses prescription was correct.  Tami, our PT, suggested we see Dr. Glonek.  Dr. Glonek was very thorough and spent over an hour with her.  He said that her eyes are crossing when she is trying to focus on something (and now that he said that, I can't stop noticing it... he is totally right!!).  He said he doesn't think vision therapy will help her right now because it's been happening for so long and her muscles have now grown differently.  At this point he thinks there is a good chance she might need an eye surgery.  He wants to try and re-train the muscles first, before we talk about surgery, but he's not sure that will do the trick.  She is a  +0.75 prescription, but he wants to put her in +1.25 to see if over-correcting her will make her muscles work a little more. If that doesn't work,  we will have to see Dr. Cassidy, a surgeon, and then will follow up with Dr. Glonek for vision therapy after the surgery.  We ordered new glasses and he wants to see her after she has been wearing them a month to see what kind of progress she is making.  I am praying that the change in glasses will help and that she will not need another surgery.  I also had him take a quick peek at Madi and Conner, and it seems they may be having some problems too, so I will have them checked out more thoroughly as well when we go pick up Ramya's glasses. 

Orphanage photos...

 

 

 

Now...

 

 

 

 

Today I took Madi down to PCH for an appointment with Dr. Condie, her neurologist.  He didn't get to see her last time we were admitted to PCH, and though they said we didn't need to follow up with him until our next scheduled appointment, I had some questions I wanted to discuss.  His wife is about to have a baby so getting an appointment with him was tricky, but the squeezed us in and I was very thankful!  He also spent about 45 minutes with us so that we could really talk things through, and it always means a lot to me when a doctor is willing to take that kind of time with us. 

 

I told Dr. Condie that I would like to have oxygen at home to put on Madi when she is seizing.  The clonazepam, her rescue medicine, never seems to be enough.  The turning point for getting her to stop seizing seems to be once the paramedics put oxygen on her.  I told him I want to be able to pop a clonazepam in her cheek and then put an oxygen mask on her right away in hopes that we can stop the seizures quicker and bypass the need for the extra doses of clonazepam, the paramedics, and a trip to the hospital. Madi has really only had 4 seizures this year, which is wonderful, but they were very long ones (they can easily last between 20-45 minutes at least!).  We agreed that the quantity of seizures is no the big issue, it is the duration that is such a problem.  He agrees that the oxygen would be a good idea for her and said it may take a little time to get it, as it's not a regular prescription, but that he thinks he can get it for us.  We left her Keppra dosage the same and are going to try the oxygen for now and see how it goes.  If this doesn't help, she may need a second seizure medication at night before bed (the kepra is twice a day). 

 

Another issue I talked with him about is rashes Madi has had around her mouth.  She gets the rashes any time she gets a little gluten or dairy, but even being very, very careful with her diet (we don't eat many processed foods anyhow, and I cook mostly from scratch), I cannot seem to get the rashes to go away.  I asked if it could be from her Keppra, as we get generic.  He said it very well could be from the generic form of keppra.  With generics, they can change the formula of their suspensions (the medication itself is the same, but what they mix it with can vary) and not notify anyone, so it very well could be that they changed the formula and she is now reacting to something in it.  We are going to try non-generic keppra and see if that takes care of it. 

 

Dr. Condie would like Madi to see an allergist because of her food sensitivities, as well as how she reacts to bug bites (I was telling him I would like to get an Epipen, just in case, because she gets huge welts from bug bites and I worry what a bee sting could do to her).  Today when I brought her in she also had a rash all over her chest, abdomen, armpits, and legs.  I have no idea where the rash came from or why she had it.  He gave us a referral to an allergist that works out of phoenix children's hospital (PCH) and we will make an appointment with her tomorrow.

 

Other than that we don't have any big updates.  We head to California for about a week and a half and will spend 2 days at Disneyland while we are there.  The kiddos are SO excited!!  We have quite a few more appointments to cram in between now and then, so these next few weeks are going to be busy.  We can't wait to go and relax though, and it will all be worth it!!



 

 

 

Home... Feels SO Good!!

We are home.

I feel like I could end the post there and it would be just perfect ;).

We were discharged at about 11:45 am, then met David, Conner, and Ramya downstairs for lunch in the cafeteria before heading over to Ramya's urodynamics testing and urologist appointment at 1:00.  The urodynamics test went well.  Ramya is able to hold more than we thought she could, though she leaks a lot still.  The doctor thinks her bladder size is decent, and it doesn't seem to be too spastic or rigid.  He's thinking the leaking might be due to poor muscle control.  He thinks if we bulk up the area (not with botox, but another substance I can't remember the name of right now, I think it starts with a 'd'), she may not leak and she also may not need augmentation surgery.  He wants us to come in for an out-patient exploratory surgery so he can see if this is the case.  He also wants to check her mitrofanoff and try to get that up and working.  I asked if he can clean up her granulation tissue as well during that time and he thinks he can.

I talked to Dr. Zuniga more about Madi's episode, and he is in agreeance with me.  It seems they get "lucky" and find bacteria to blame for the seizures, and just don't explore further, even though neither of us (though I'm not doctor so I know my opinion only matters so much to them) think that is what is causing them.  Because Madi is cathed, and because she has renal reflux, she is basically always colonizing bacteria.  You could culture her at any point in time and find bacteria.  If that was the cause of the seizures, that poor girl would constantly have them!  If she had a bad UTI she was symptomatic for, or if she had the underlying bacteria plus something else going on, then that would make more sense to me.  I'm praying that I'm wrong, though, and the antibiotics do the trick. 

After we got home we went to see The Croods and eat ice cream. We laughed a lot and it is just what we needed!!!  After we got home and got ready, all the kiddos piled on top of me to go to sleep, as they are all missing momma and more clingy.  I tried to sneak out of the room, but Madi woke up looking for me.  She's a lot more on guard right now and worked up because of what had happened. 

Heading to bed soon and praying for uneventful and restful sleep tonight!!!  I pray the same for all of you!

An Update from Our Current Hospital Stay

As some of you know (from my Facebook posts), Madi and I are back at Phoenix Children's Hospital.  We are going on our second night here, though it looks like we will be sprung tomorrow... woooo hoooo!

 A view I'm thankful for, but could use a break from seeing ;)

 

 

 

On Wednesday we had a normal day.  Madi had a little dance recital and was glowing.  She did so great!  Conner had Karate and was given a red stripe on his white belt, and couldn't be more excited! We didn't know he was getting one and we are so proud of him!  Ramya had a good day and was enjoying watching Conner and Madi and being with family.  It was a wonderful day.... until dinner time came.  About half way through her dinner, Madi stopped eating and started looking a little ashen.  She started throwing up and told me her stomach hurt.  Madi throws up during eating fairly often, so it was nothing new to us.  She and Ramya were fighting over a little plastic bird earlier that evening, and Madi was crying and upset that Ramya wouldn't give her the little bird, so I figured the crying upset her little tummy and that was why she was throwing up.  She stopped throwing up, but looked like she didn't feel well.  She was talking to me normally, responding normally, but just didn't look quite right.  She also didn't want her brownie, so that tells you something was very wrong ;).  She started throwing up again, and just kept going.  At first she didn't want out of her special tomato chair (she was sitting and eating next to me), but she kept throwing up, so I took her out, sat on the floor with her (so that if she threw up, we were still on the tile), and held her.  I started noticing she was spacing out and looking off to the right.  I told David something didn't look right and told him to get her rescue med.  He went to get it, and by the time he got back, the repetitive twitching had started.  I gave her one dose, and she started to come back a bit, but still wasn't looking quite right.  We called 911 to have them come evaluate her.  They came and asked a bunch of questions, started assessing her, and then the seizing started again.  They watched her for a bit and were trying to get an IV in (thank God they were able to get it in her little foot.  I'm so thankful she doesn't feel it there so it can't hurt her!!).  I asked if I should give another dose of the rescue meds and they said yes, so I gave another.  She seemed to come out of it a bit, but she had never seized twice in a row before, had never seized other than coming in or out of sleep before,  and she had never not responded to the first dose of rescue meds before, so we loaded up in the ambulance to bring her in and have her evaluated.  On the way to the hospital, she started seizing again.  They gave her verset in her IV, and shortly after, she was completely knocked out, but wasn't seizing anymore.  Because we had just checked her shunt on Friday, they didn't feel the need to do xrays and a CT scan again, but neurology wanted us to stay for another EEG and observation, so they admitted us.

 

 

 



The only thing they can see that may have caused Wednesday nights events is that Madi's urine sample from Friday had grown e-coli.  This isn't surprising at all, since Madi is cathed 4 times a day and always has some bacteria in her system and e-coli is the most common and least concerning.  She also has renal reflux, which compounds everything.  She is on a prophylactic antibiotic because of it as well, to try and keep UTIs away.  Usually, the urologist only worries if she is showing signs of a UTI.  Her urine is clear, though, she's not throwing up unless she's seizing, she's had no fevers, I haven't seen her dumping white blood cells, there is no smell to her urine, her appetite is good, and she has no symptoms of a UTI.  With the culture that grew, though, the numbers were higher than they like to see, even with it being unsymptomatic.  They decided to treat the bacteria/UTI because if it is causing her seizure threshold to lower, then it's absolutely worth treating.  I'm praying that is what was causing her body to go haywire and that, once treated, the seizures will stop.   I told the neurologist that Madi had never seized during the day like that before, and never not responded to her medication like that before, and basically he said seizures can change and it's not unusual for things like this to happen.

Madi just got her second dose of IV antibiotics.  They want to observe her through tonight, but think we will be able to go home tomorrow.  They are upping her doses of daily and rescue seizure meds in hopes that the higher dose will help keep the seizures away as well.  She was on a very conservative dose, and still has some more room to increase if we need.

Conner and Ramya both cried when Madi and I left via ambulance again.  I feel sad that I have to be away from them.  Between the India trip, the extra doctor's appointments, and the trip in last Friday, it's just been a lot for them and their little hearts.  When I was talking to Ramya on the phone last night, she told me she was sad and wanted me to rock her.  I made sure to tell her that daddy is really good at rocking too :).  Today she and Conner came down to visit.  The hospital is still on RSV restrictions, so they couldn't come up, but David and I switched spots so I could spend some time with them.  It seemed to help (well, that and a pack of Scooby Do fruit snacks too ;)). 

I'm exhausted from about 3 hours of sleep last night, and I'm feeling a little sad and nervous about what happened on Wednesday night.  I'm trying to dwell on the positive, though, so I thought I'd post some things I am thankful for.

1) I am thankful for family who comes to help out.  For my mom who helped with Conner and Madi today, and then came down to the hospital to visit with us.  Also, for my sister-in-law who came to visit and brought Madi a cute little green tu-tu and green and pink monster stuffed animal.

 

Rockin' her green tu-tu!

 

 

2) For therapy dogs...

 

 

 

3) For the view from our room...

 

 

 

4) For Child Life and their help keeping Madi entertained and happy

 

Playing Candy Land

 

 

 

5) For reasonably priced food at the hospital that tastes pretty good too.  Also, of course, for the Starbucks here in the hospital!!  I didn't eat anything or get coffee until about 2pm, when my mom came with my wallet, so that Starbucks was like mana from  Heaven right about then :).

 

6)  For amazing doctors that care about Madi and make sure to come check in with us, even when they don't "have to".

 









7) That the paramedics now know exactly where our house is and don't get lost any more ;).

8) For good friends who love us, pray for us, and even brighten our day with little gifts.

 

 

9) For facetime and Yahoo Instant Messenger, helping us feel more connected, even during our times away.

 



10) For my faith and hope in God, because no matter how hard things feel, I know everything will be ok.  I may feel like things are out of control, but I rest assured knowing that God is always in control.

 

 



Tomorrow Ramya has a urology appointment at 1:00 at PCH for a urodynamics test and an appointment with the urologist.  The hospital said they will most likely be able to get us out in time for her appointment, so the plan is for my mom to bring Ramya down and for Madi and I to go right over with her.  It will be another busy day, but then we will be home again as a family, and most of Ramya's initial tests and appointments will be behind us for the time being.  That is sweet music to this tired momma's ears!

An Update from the World of Neurology and She's Weaned

We went to see Dr. Condie (AKA "The Doctor with Spikey Hair" as Madi calls him), a neurologist from Barrow's Neurological Center that specializes in pediatrics and works out of Phoenix Children's Hospital, for our follow up from Madi's seizures.  Dr. Condie is amazing and answered all of my questions.  He would like to do a 3-day EEG on Madi to see if we can catch some of her odd night-time behaviors (like teeth chattering and the such) on the machine/video.  I let him know I needed it done ASAP before India, and he agreed, so we are hoping to get in by the end of October.  Other than the 3 episodes I posted about, she's had 3 nighttime teeth chattering ones episodes that didn't require rescue meds but that were just odd, and 2 throwing-up during sleep episodes that also didn't require medication.  He's not sure if they are seizures or not, so we are hoping it happens while she is being monitored.  I hope to know the date soon, and we will gladly welcome visitors (especially ones that come with food, since it will be hard for me to leave to eat)!

In other news, Madi is officially weaned (from nursing).  She wasn't quite ready to be done, but momma was.  She has been down to once a day for a long time, so it was an easy thing to cut off.  And, no, I never nursed her standing on a stool, in public past about the age of almost 2, or any of the other things the media says you do when you nurse past the age of 1 that make people look at you like you have 3 heads.  She's been getting constipated more easily now, so I've been slipping in extra probiotics, but mostly she's fared well. 

No adoption news yet, still waiting for those court documents to come in, but we hope to have them soon!  I'm starting the application process for my visa, and trying to keep things moving along.  I will update when I know more!

And we have seizure 3

Friday did not turn out quite how I had imagined.  Madi was randomly awake from about 12:30 until about 1:30 am, then awoke at 7:10ish dry-heaving/seizing.  This seizure was different from the other two and it took me a while to realize what was going on.  After dry-heaving, Madi fell asleep.  She awoke, though, and was responding, but was slow to respond.  Then her eyes started blinking a lot and I knew for sure (well, at least I think I do ;)) that it was a seizure.  I gave her the rescue medicine I have for her, since her seizures are long and complex, and she quickly fell asleep.  When she awoke, she was back to her normal self. 

I've already talked with the nurse at the neurologist office, the pediatrician, and our naturopathic doctor, and missed a call from the neurologist (darn that terrible phone reception!!  Time to get a new cell phone carrier!!).  I am also waiting for a call back from the neurosurgeon.  Thankfully, though, this seizure did not bring any paralysis and did not land us in the hospital, nor did it necessitate a 911 call.  I am just really bummed that it came at just 2 1/2 weeks after her last one, and while she is on her daily seizure medication. 

Seizures aren't fun, that's for sure. I find myself stressing about when the next one will be and being afraid to let her out of my sight for any length of time. If she is slow to respond, because she's tired and spaced out, or she's dreaming and twitching in her dream, I fear the worst. What also makes it hard is that each of her 3 seizures have been quite different.  David and I finally got out for a date night to the movies, but we couldn't get cell phone reception and couldn't relax without it, so we had to walk out and get a refund.  We ended up going out to dinner and it was still nice to be out together, but it's hard to be worrying so much. 

For the last few days I've had the Beatles song that says "Life Goes On" running through my head.  Though this onset of seizures is hard on mommas heart,  I know that God is in control and has a plan. We choose not to sit at home, but to be out and active, to continue our daily activities, and to try and live our life to the fullest.  We will learn to adapt and handle our new changes in life and not let them keep us from enjoying our time together.  Life goes on, and for that I am so grateful. 

I am praying we can get her seizures under control so that she can go back to being seizure-free. Please be praying with us.  Please also pray for wisdom for us and for the doctors as we learn how to best how to control Madi's seizures.