A Quick Update on Madi and a Prayer Request for Deena

For those of you who are our friends on Facebook, you may have seen that Madi was in the hospital this weekend.  On Friday she woke up seizing, but it wasn't a typical series of seizures for her.  After maxing her out on her rescue med, I called 911 and asked to be taken to the hospital.  She was awake the whole time, but I think she was hallucinating because she kept talking about seeing Sponge Bob and skeletons; two things she never talks about or watches on TV.  At the hospital she had another seizure are required IV meds to stop it.  After that she finally fell asleep and I knew that the worst had passed.  We had to change rooms because they were understaffed and were moving everyone over to the adult ED section, but she slept through all of that, thankfully.

While we were at the hospital they ran tests to try and see why she had a seizure.  Her shunt series came back just fine, her urine looked great, but they came back and said her blood work looked terrible.  Her white and red counts, as well as her platelets, were very low.  They told me they needed to transfer me to another hospital so that she could see a hematologist and prepared me for the fact that she might need a platelet transplant.

They let me transfer with her, so I was very thankful for that.  This is the first ambulance ride she remembers, and she was pretty excited, but also nervous and wanted me to hold her hand the whole time.  I'm thankful I was able to be there to do that for her.  

At the next hospital the brought us directly to the PICU.  We were put in a room with a nurse that already new Madi, and she was really sweet with her.  You could see in her eyes, though, that she was worried for her and what news might be headed our way.  They sent the hematologist to talk to me.  She started using words like "leukemia" and "cancer" and we were starting to get worried.  They wanted to re-run her tests to get a baseline there.  Thankfully they were able to use the ultrasound machine to find a vein in her leg, so the blood draw didn't bother her at all.  Normally it is very traumatic and upsetting for her.  

After a long day of waiting, they got her blood test results back.  Everything looked perfect.  Not one thing was low.  They transferred us to the hematologist unit and out of the PICU and the doctor came to talk with us again.  They basically said that they couldn't believe the blood work was from the same child.  The doctor did say she has seen this happen one other time, where things went from looking terrible to looking just fine.  She said she wasn't sure what happened, but we were all so relieved.  God is watching out for our sweet girl for sure.  We stayed overnight for monitoring but were discharged the next morning.

It was a crazy and stressful whirlwind, but we are so glad to be home as a family again.  Madi is back to her normal, spunky self, and we couldn't be more thankful!

Next up... Deena!  Sweet Deena has dental surgery tomorrow.  She's needed it for months but this is the first opening her dentist had available and we are thankful the time has come.  She came home from India with some rotten teeth, lots of cavities, and a special little mouth that's missing most of her adult teeth.  In addition to having OI (osteogenesis imperfecta), she also had DI ( Dentinogenesis Imperfecta).  Tomorrow they will pull some of the teeth that are beyond saving, repair those that can be repaired, and cap those that can be saved with a cap.  The surgery should last about 1 1/2 hours and should be outpatient if all goes as planned.  The long term plan is to keep her teeth as healthy as possible, going to partial dentures when needed.  Please be praying for a safe surgery and fast recovery.

Thank you!!

     

Updates Galore and Lots of Fun Times

Oh gosh, once again, I am super behind on blogging!  Life just seems to move so fast! 

I'll start with our not-so-fun few days last week, but luckily these days were followed by an AMAZING weekend, which I will share about too!

On Tuesday Madi woke up having a seizure.  She sleeps next to me in bed because her seizures are usually during sleep and she doesn't make much noise. I'm afraid to miss them, and what it could mean for her, so I keep her close.  She started with her typical rhythmic gagging and I gave her rescue meds and oxygen right away.  Usually it takes me her full dosage of rescue meds and constant oxygen to get them to stop, but this time it was a stubborn one and her full dosage of rescue meds didn't do the trick.  Her seizure protocol is that I call for an ambulance to have her evaluated if/when I get to her full dosage amount.  If she's stable and the seizure has passed, we can keep her at home.  If she's not stable or we can't get them to stop, we head to the hospital.  Usually by the time the ambulance comes she is already asleep and I know the seizure has passed.  We may take her in and check her shunt to be safe (though she's never had a seizure when her shunt failed), but they don't usually admit us.  This time once we got to the hospital she started seizing again and they had to give her more medication in the hospital.  That did the trick, thank God, but then her stats dropped and she wasn't clearing her carbon dioxide well enough.  They thought they may need to put her on b-pap or to tube her, but thankfully her numbers started normalizing very slowly, so they transferred us to the PICU and let her continue to improve there.   We checked her shunt to be safe, but her shunt, blood work, urine, and everything else was fine.  They watched her overnight and then we got to go home the next day.  We had to try out a new hospital here in Tucson (UMC), which is never fun, and we had a hard time getting an IV, so we had multiple pokes which was terrible, but the staff was great with her and we are thankful for the care she received.  David also had a crazy busy few days at work, because everything always happens at once, but luckily my aunt was able to come entertain kiddos while Madi and I were in the hospital, so we are thankful for that!

She's always sad until the rest of the family can join us.  Family makes everything better!

Ramya saw the vision specialist today.  We got a lot of answers to some things we have been noticing with her vision and she starts vision therapy next week.  It is common for kiddos from orphanage settings to have vision issues because of the lack of visual stimulation when they are tiny.  Her eyes have improved a lot since coming home, and we are hoping that this helps remedy her eye issues.  We are starting with 8 one-on-one sessions, but may need 12 total.  Conner has 3 more sessions of his therapy, though he doesn't have as much going on, so he was able to attend group sessions (and save our pocket book quite a bit of money).  Hopefully this will do the trick! 

In other medical news, Deena's leg is healing great and we have our next follow up with the orthopedic surgeon in 4 months.  We are in the process of getting her a wheelchair of her own, but in the meantime, she is able to use Madi's old wheelchair and it fits her well.    We also have her next PAM infusion scheduled for July and we will be able to do an in-home infusion, which is wonderful!

We also had Deena's re-adoption day through our local court.  Though Deena came home fully adopted, we wanted to re-adopt her in the US so that we could get an actual birth certificate for her and make it officially official.  She was really excited for her day and told me all day how this meant it was forever.  Of course when we got in front of the judge she was wearing her super serious face and seemed to either be terrified or didn't care, but she really was overjoyed and couldn't stop talking about how happy she was. 

During our extra time we've been taking the kids on outings and recently went to the zoo.  This time we rode the train and they kids were crazy excited about it.  They had a blast!

We had quiet a few visitors last month, which was really nice.  David's brother, Mark, and his wife, Kim, and kiddos came to spend time with us.  We took them to the Desert Museum and everyone had a lot of fun!  My parents also came for Mother's day, so we were really excited about that.  We took them to Tono Chul park and we all enjoyed our time there.  We also had my aunt and second cousin over for dinner when my parents were here and it was fun to all get together.  Oh, and our friends Darlene and Samuel from homeschool co-op came by to play and visit.  It's always  nice to see a familiar face!!

Conner attended camp for the first time over Memorial Day weekend.  He went with our old Church, North Valley Community Church.  He really, really, really wanted to go; until the night before.  He got nervous and scared and there were tears involved.  We talked and prayed through it, and I reassured him I would come pick him up if he needed me.  He called me every day, but quickly decided camp is amazing.   His days were filled with archery, airsoft wars, swimming, rock climbing, zip lines, and small group.  He told me he can't wait to go again next year!

While Conner was gone at camp we stayed at my parent's house in Phoenix.  We went to a wedding, saw family, and hung out with friends we have been missing.  We also went painting with David's family and celebrated my birthday.  We had a wonderful time!

While we were out painting we also went to eat lunch.  While we were eating Roger, Madi's pilot from the Sky Kids event we attended (read about that here) walked in.  Madi was really excited to see him, and he was excited to see her as well. 

Roger told me he had been meaning to e-mail me and tell me that, at the event, Madi really touched his heart and made his day special.  He was hoping we would attend the next event and he would get to see her, but it hadn't worked out.  We had registered for the event, but hadn't gotten a call that we were accepted until last minute and at that point, David was in Tucson, I was in Phoenix with the kids, the house was for sale, we were trying to find a rental in Tucson and start moving, I was waiting to leave at any point to get Deena home, and we had to miss the event, sadly, because life was pretty nuts.  Roger spent quite some time talking with us (Madi somehow even convinced him to walk over to Ross and help David and the girls shop for a birthday dress for me.  Only Madi could convince someone to do that.  She cracks me up!!!) and Madi was overjoyed.  Long story short, David and Roger talked and Roger offered to come to Tucson to take us up flying.  The kiddos (and David) were crazy excited!  What's even more amazing is he talked to the company he flies for, Transpac Aviation Academy, and they sponsored the entire flight!  He came out this weekend, which was just what we needed after our not-so-fun hospital stay.  He took the kiddos and David and I up in rounds so that each child could help him fly the plane.  The kids all loved it and haven't stopped talking about it.  Madi calls Roger "her pilot" and tells everyone that when she grows up she is going to live in the Taj Majal and her pilot, Roger, will pick her up and take her on vacation.  It must be nice having your own personal pilot, right!?!?!?  Madi kept talking about how awesome it all was, and even sang Roger the "Everything is Awesome" song from the Lego movie while were flying.  The company spoiled us rotten and even sent Roger with hats, lanyards, keychains, and treats for the kids.  We feel so  blessed!

There was a restaurant at the airport we flew out of called Todd's Restaurant at Ryan Airfield.  It's a family-owned restaurant and they were so sweet to our family.  They were the only place with air conditioning at the little airport, so they let us come in and hang out in their kid area for a few hours while we all took turns going up in the airplane.  They chatted with the kids, gave us drinks, and even convinced the fire fighters eating there to pull the trucks up for the kids to see.  The fire fighters turned their lights on and visited with the kids for a bit and they loved it!  After we were done flying we ate at the restaurant with Roger and the food was really, really good.  The husband of the husband/wife owner team makes the food.  He went to culinary school and the food is definitely not your typical diner food, it was really yummy!  The prickly pear tea and prickly pear cole slaw were my favorites.  We will definitely be going back to eat there and watch the planes come in and out.  If you live in the Tucson area, you have to check them out!  The wife also heard that we were new to Tucson and gave us her cell phone number with instructions to call if we ever needed anything at all.  We were very touched! 

I think that's about it for updates for now.  As you can see, our days are busy, but we play hard too.  We all know you are never promised tomorrow, but when you have kiddos with significant medical needs, you realize just that much more how much of a gift every moment of every day is.  We try our best to live life to the fullest and not let the not-so-fun parts of life keep us down.  We are crazy blessed and are so thankful that every day, even on the hard days, our journey is filled with joy!

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! 

________________

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!!

So Much to Update!

Wow, life has been crazy!  I don't even know where I last left off!

Let's see...

Last I checked in we had just put our house on the market and ran away to California for our yearly vacation.  We had a blast!  Madi had an unexpected seizure on the beach so we got to tour Rady's Children's Hospital, but they were great and Madi was soon back to her normal self. We enjoyed pancakes at Richard Walker's Pancake house, spent lots of time at the beach, got to see both of my birth parents, and really enjoyed ourselves!

 

 

We also got a chance to Skype with Deena while we were in California, which was really amazing!  Ramya couldn't stop talking about how cool it was that she got to see her. 

 

 

When we got home life got crazy fast.  David left for Tucson to work more closely with his boss, we had appointments and therapies to catch up on from being gone, and of course we had to keep the house super spotless in case there was a showing.  Most of our days were (and still are) spent homeschooling at my parent's house, therapy at my parent's house, and then being gone the rest of the day as much as possible to keep our house spotless.  Our house still hasn't sold but we are trying to remain positive.  David and I both felt strongly that we should sell before Deena comes home and free up that equity, and we know just the right buyers will come along when the time is right.   Waiting is hard, but is teaching us a lot.

 

 

We got amazing news that our verbal orders were granted for our adoption.  What does that mean for us?  That means as soon as the written orders are received the orphanage can apply for Deena's passport.  That usually takes about 4 weeks.  Once the passport is received we are off to India!  So, basically, in about a month I will likely be in India bringing Deena home!  Madi's neurologist cleared Madi for travel to India but we still haven't decided what is the best thing to do.  It would be REALLY hard to bring all the kiddos to India, but they want to go so badly.  It's also REALLY expensive, and unless our house sells we do not have the money to take them.  For right now we wait, but we do need to decide soon as I need to apply for visas for whomever goes.  If we don't travel as a family, my friend Kariann will be traveling with me.

 

 

I think I also shared that after we had decided to list our house for sale David's boss asked us to relocate to Tucson, where he lives.  David has been there this month trying it out and it's going well.  They both feel like him being there will be important and helpful.  Not only will it help David get back in to the grove of trading, but he can also help his boss with projects and research.  David will also be able to work closely with his boss and will grow tremendously as a trader.  The plan right now is to move to Tucson for about 2 years and then re-evaluate. 

 

 

This weekend the kiddos and I trekked up to stay with David and look at rentals.  David is currently in a VRBO he rented for the month, but we need a long-term rental before Deena comes home.  This is proving to be quite difficult for us.  We need a place within about 10-15 minutes of his boss, just in case we have an emergency (aka Madi has a seizure) and I need him home quickly.  His boss lives in an area that is a lot more rugged than we are used to.  The homes are also quite a bit older and most have multiple steps up and steps down within the interior of the home.  When you add in the fact that we will soon have 4 kids, 3 wheelchairs, and I need an area to homeschool from, finding a home that is affordable is feeling next to impossible.  I was hoping I would leave feeling at peace, and instead I left feeling disappointed.  I truly believe in my heart that God is calling us to Tucson but the timing and the circumstances with Deena coming home soon and needing to get settled first are feeling quite overwhelming.  I keep telling myself that God has a plan and that all the details are already worked out so there is no reason to stress.  It's much easier said than done, but I am trying. 

 

 

I think those are all of our big updates for now.  We have some HUGE changes coming our way very, very quickly.  Please join us as we pray for buyers for our house, an affordable rental and Tucson that would work well for our family, safe travels to India, no seizures for Madi while I/we are gone, peace, and discernment.

 

 

Thank you for praying for our family and for walking our journey with us!

 

 



 

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.

 

 

 

Thank God We Have It!!

WE GOT HER MEDICATION!!!!!

(insert HUGE sigh of relief here....)


Whew. 

Yesterday our neurologist called to check on Madi and see if she was able to take the pills he prescribed.  We had tried many times, but unfortunately, she just couldn't do it.  She tried really hard, though, and I am proud of her for that.  We decided to do one week of generic, even though it bothers her system, because going without just isn't an option.  The generic didn't get called in, though, so I continued to use the emergency fill of brand-name I had, which was getting very low.  This morning I called the neurologist office to have the generic sent in and got a call back about an hour later to let me know that they had just checked with both of our insurances and we could officially get our brand-name now.  YEAH!  I called our pharmacy and they were able to run it through.  I was SO relieved!  I think I thanked both the neurologist office and Walmart about 10 times each :).

Though it always stinks to have the stress of fighting with insurance, the extra calls, and the worry about your kiddo, I am so thankful for people in our lives who love Madi and will work so hard to get what she needs.  I'm thankful that the neurologist cares about her enough to take time out of his insanely busy schedule to call us himself and check on her, making sure we got a solution.  I'm thankful for his staff who didn't give up and spent a ton of time calling insurance and helping us resolve the issue.  I'm thankful for a pharmacy where they know her by name and always go above and beyond for her.  They spent at least an hour on the phone helping us as well.  I'm also thankful for our friends and family who encouraged us and prayed for us while we tried so hard to get her medication.  One thing is for sure; we are blessed beyond measure!


P.S.  I asked if I could crush the  medication and give it in pudding or juice or something and he said no, absolutely do not crush it and give it to her.  I'm glad I asked first!


 

Stable Influence Riding Show Fun and Seizure Not-So-Fun

Saturday morning the girls had their Stable Influence riding show.  They have been taking therapeutic riding lessons for about a month and a half now and really love it.  This Saturday was the show they have been waiting for and they both did fantastic!  I have seen a lot of changes in them already and am so glad they are able to participate.  All of their family came to watch and they were so excited!  Their new physical therapist, Kelly, came with her daughters too and that made them very happy!  Here's a video of each of them riding...

Madi....




Ramya....

 

Here are a few photos as well...

 

 

 



 

I think Madi had a little too much fun though because she unfortunately had a seizure when she came home.   We walked in the door and I had started making a bottle for a baby we were babysitting and went to start lunch.  I heard her little voice say "mom" and went to her.  She looked at me and started her rhythmic gagging.  Crap.  I hollered to David to grab her oxygen and rescue medicine.  I started her on both, but it did not stop the seizure.  3 tabs of rescue med total still didn't do the trick, so as is our protocol, I called 911.  Madi was kind of coming in and out but still wasn't herself (she normally falls asleep after the seizure has ended and she wasn't falling asleep), so off to Mendy's Place we went in an ambulance.  Never a dull moment around here!!  Everything checked out (CT scan, blood, and urine tests), so they sent us home.  She had a bad headache, so we gave her some Tylenol and she was very tired so I just let her sleep.  It was a really odd seizure for her because she almost never has seizures during the day, they are usually while coming in or out of sleep.  I kept her in the shade as much as I could during the show and kept making her drink water, but I am wondering if she got over heated and if that triggered it.  They checked her electrolytes, though, and they were fine.  She wasn't sick, had no missed dosages, and had no "reason" to seize.  I will follow up with her neurologist and neurosurgeon tomorrow to see if they have any insight. In the meantime we have increased her seizure medication dosage to see if that will help. 

(My sweet girl was SO tired.  She was mad at the doctor for waking her up.  When the doctor asked her what she wanted, she swung at her and yelled, "TO SLEEP!"  They left her alone after that and let her rest :))

 



 

(Madi's BFF Gloria came to visit and brought her flowers which cheered her up :))

 

 

 

 

So that was our excitement for the day!  To say we were all exhausted was an understatement.  We skipped Church today and all slept in.  We really needed it!  We are all feeling better now, and Madi is back to her normal spunky self, thank God!