Our Last Day at Disney

Today was our last day at Disney before we head out to the next phase of vacation; the beach.  Disney was even more crowded than normal so we didn't stay all day this time.  We hit the big rides we had missed on Thursday, then headed to downtown Disney for shopping and dinner.  Poor Madi threw up everywhere, in the restaurant, right before dinner came.  We paid our bill, threw all of our stuff in to-go boxes, and headed for the hotel.   Of course our hotel was on the other side of security, and the lines were astronomical.  I talked to a security guard about a quick way across, because Madi and I were both covered in throw up, and at first she refused to let us across quickly.  Finally she decided to escort Madi and I across, but the rest of the group had to stay and wait in line, which is fine.  She offered us a nurse, but I was anxious to get back and be by Madi's oxygen tank and rescue meds just in case of a seizure (though I do carry rescue meds on me at all times as well.  I carry her clonazepam (oral), but had diazepam (rectal) at the room).  I was able to get Madi back quickly and clean her up.  She was in good spirits the whole way back, so hopefully it's a fluke and she will wake up feeling back to her normal self.  We had a nice, quiet evening in the room watching TV and resting, which was just what we needed.  Tomorrow we drive to Carlsbad and also will get to meet up with my birth mom and half sister for lunch (hopefully.... I'm hoping Madi wakes up feeling better, though she kept saying she didn't feel sick as it was), so we are excited to see them.  I'll update later with pictures of the BEACH, wooo hooo!!!

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!

An Adoption and Life Update

First off I would like to apologize for being so quiet recently.  I have no excuse other than to say that we are dealing with a lot of hard "stuff" right now and by the time the day is over, I'm just plain tired!  Don't get me wrong, we have had so many moments of laughter and joy, and we are still so beyond crazy blessed, but it seems like life just keeps throwing us new curve balls.  Our amazing kids always keep us smiling though!

 

The last few months David has been in Tucson while I have been in Phoenix at our house with the kids.  We see each other on the weekends and Facetime often, but we don't love being separated.  We both have our routines, though, and things are going pretty smoothly, so I am thankful for that.  Madi did have a seizure a few weeks back when we were in Phoenix and David wasn't with us.  Thankfully my parents were able to get here quickly to stay with Conner and Ramya so that I didn't have to leave Madi's side.  We were in the ER until 3 am but thankfully her shunt and everything is working great! 

We are still trying to sell our house, so the kids and I have to keep it super clean and show-ready at all times.  We spend most of our days homeschooling at my parents house, in therapy, or out with friends, which helps keep it clean.  It's also been nice to see friends and family so much since we will be moving soon.  The kids are loving that part!  We are blessed with so many people we love, and we will miss these moments for sure!

 

We are praying for buyers soon so that we can sell the house by the time Deena comes home.  We are trying really hard not to feel discouraged because we are still within the average sale times in our neighborhood.  We are just both struggling because we put a lot of time and money in to making it look move-in-ready and felt like it would sell quickly.  We both have peace, though, knowing God has the perfect buyers out there and that they will come along at the perfect time.  Sometimes we have to remind ourselves of it OFTEN, but we do truly believe it.  My prayer always has been, and still is, that it will sell before Deena comes home.  We would love if you would join us in praying for that!

David was doing really well at work and getting his groove back and then he had this really crazy circumstance that totally knocked him back down.  We are worried about finances, especially having both a mortgage and a rent right now and with how much it will cost for us to bring Deena home from India, so I know he's feeling a lot of extra stress at the moment.  We ended up owing quite a bit more to state taxes than we planned on and haven't gotten our federal tax refund yet so we are just kind of scraping by until our house sells.  I know he is feeling defeated.  Please be praying for David and for peace that surpasses all understanding.  I fully believe he will get back on his feet; there's no doubt in my mind.  We are both working on trusting God during these trials and are praying that God uses our circumstances to strengthen who we are in Him.  We both feel at peace, even though we are feeling extra stress, and we are thankful for that. 

We were expecting to be in India (*we* as in myself, Conner, and my friend Kariann) this week or next to bring Deena home.  Our written court orders were received about 3 weeks ago and all that was left was passport, which takes about 2-4 weeks normally.  We just found out yesterday, though, that her passport hasn't been applied for yet.  They go on December 4th to apply, and then we have about a 2-4 week wait after that.  At this point it's not looking like she will be home for Christmas, which we are sad about.  We also found out that they did surgery last week to remove a rod from her thigh bone.  The doctor didn't feel like she needed it any more.  I think this is what I'm grieving the most over.  We were granted a full and final adoption, so legally she is now ours, but they did not tell us they were going to do this.  I'm worried she will get home and then need it put back in and she will have gone through all that for nothing.  But, most of all, I'm saddened that I could not be there to hold her hand and hug her through the pain.  I'm her momma and I can't advocate for her yet, and that is a really terrible feeling.  I cannot wait until she is home and I can be there for her.  She will never be alone again!  We did get her carseat and bed in (though she will sleep in our room for quite a while), so that was a lot of fun.  It was nice feeling like we were able to prepare for her and celebrate her a bit.  Even Hope thinks her new bed is super comfortable!

 

We have two more weeks of homeschool co-op and then we will officially join David in Tucson after that.  We have already said "good-bye" to our Church family, which was hard for us as we are very connected there and love our community so much.  We had our last attachment therapy session as well.  It looks like next week will be our last week for speech, occupational, and physical therapy in Phoenix too.  After returning home from India I will find new therapists in Tucson for the girls.  I would like to take a month off, though, when Deena comes home so that we can focus on our family for a while.  I will, of course, continue all of their therapy goals myself in the meantime.  I have always believed the biggest strides aren't necessarily made in therapy, though I think therapy is really important, but instead by practicing therapy goals throughout the week. 

Here we are "wrapping Ramya in our love" on our last day of attachment therapy...

 

I think that about sums up life for now!  Thank you all for following our journey and praying for our family.  Thank you to those of you who have come over to help me pack, have messaged me to check in on me, or have had us over to visit.  We love each and every one of you and appreciate you so much!  Please continue to pray for Deena's heart and her transition in to our family.  Her whole life is about to change!  Pray for a safe trip to India to bring her home, safety for David and the girls while they are here and Conner and I are gone, that everyone will remain healthy during and after the trip, and that Madi will not have any seizures while I am away. 

 

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!

 

 



 

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!