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!

Our Not-So-Fun Trip to the ER Today

Today sure didn't start like I thought it would!

This morning Madi woke me up just after 7 with her rhythmic vomiting that indicates a seizure is starting.  I ran her out of the room, grabbed her oxygen, woke up David, grabbed her rescue medication, started the first rescue med, and started the oxygen.  I thought she was coming out of it, but about 15 minutes later she started vomiting again.  Again she got the medication and I kept on her oxygen, and again I thought she was coming out of it but then she started staring off and doing an odd thing with her hand.  I gave her the third rescue med and called 911, which is our protocol when we get to 3 of her rescue meds.  The fire department came and she was still off, so they called the ambulance to take us in.  By the time they got here, though, she was coming through it and was resting.  I asked them to take us to Phoenix Children's Hospital, as they are equipped to help Madi and all her "extras".  One fireman was fine with that, but one told me no that I needed to go to Mendy's Place, a pediatric ER closer to us, because I had maxed out her medication.  I tried to explain that we pretty much always max out her medication, and that PCH was the only place equipped to check her shunt and do what she needed.  I explained that she was coming out of it, falling asleep, and that signals the tail end of her seizures, so I felt comfortable going the extra 10 minutes to get there.  He refused to take me to PCH, though, so off to Mendy's Place we went (I understand he needs to do what he feels is best, and I know he was just being safe.  Though I was frustrated, because I knew they wouldn't have what Madi needed, I do get it).  When we got to Mendy's place and saw the doctor, she was shocked that they wouldn't take me to PCH and told me that I need to insist next time because they really couldn't handle a child as "complex" as her. They were sweet to Madi, though, and efficient, and for that I am thankful.  They were also able to do the blood draws from her feet so she didn't feel it, which is so huge!   Mendy's place ran her blood work and her white blood cell count came out a little high.  She has had a cold, but is almost over it.  They thought it could be from that or they thought the increase in white blood cell count might be from the seizure.  Either way they weren't too worried.  Her urine and x-rays came back fine and her lungs looked and sounded good.  They were unable to do the big bang MRI, as they are not equipped to do them there, so they skipped the MRI.  They called neurology and they said they were fine with skipping the MRI since she didn't have other shunt failure symptoms, and not to transfer us, so they sent us home, yeah!!

Last night I stayed up to watch a show with David and I didn't pick up the house so when they came it was messier than I like.  I had also put a bunch of oils in my hair for a scalp treatment because my scalp was itchy and had slept like that to really moisturize it.   My hair was so greasy and gross!  I left the house without shoes and in PJs as well, since we left in a hurry.   I felt like such a mess at the hospital and was very happy Madi was doing better and I could get home and give us both a shower.  We also hadn't eaten at all that day and it was already past lunch time, and I hadn't had anything to drink either, so we were hungry and thirsty.

Once we got home I hooked up another oxygen tank since ours ran out right before we left for the hospital and realized the tubing and mask was missing.  I wasn't sure if the ambulance workers accidently took it or it had gotten thrown away.  I called preferred home care, who provides our oxygen, to see if I could get another one and they said they were unable to deliver one on the weekend.  I called the fire department, who got in touch with the ambulance drivers, and they said they had left our mask on Madi when we left the house.  Because our tank had run out of oxygen and they said they were switching to theirs, I assumed they would switch the mask too and didn't even notice that it was still our mask.  I had left the mask at the hospital when we left, so I called the hospital to see if they had it.  They had thrown it out not realizing it was ours, but did very nicely offer to give us one if we drove down, so we did.  I'm so glad it all worked out! I pray we won't need it but just in case we do, I felt so much better having it ready. I am sad, though, that it wasn't enough to do the trick this time.  Bummer!

The plus side of all of this is we got an unexpected restful afternoon at home.  Madi fell asleep once we got home and rested.  David and Conner headed to the monster trucks since they had tickets, and the girls and I just relaxed and watched movies, which was nice and something we don't do often enough!

Madi is back to her normal spunky self and I am so thankful!  She's such an amazing little girl!

Resting in my arms at the hospital...

 

An Update on Our Current Hospital Stay

Just wanted to give a quick update on our current hospital stay, since I know many of you are wondering how we are doing and why exactly we are here.

We came in on Wednesday morning for a planned 3-day(ish) hospital stay.  We are in the epilepsy monitoring unit and are being monitored 24-7 (which means we get to sleep with a few lights on and there is always a video going ;)).  Basically we are trying to see where her misfirings are originating from, how her medication is working, and what types of seizures she's having (if she has one while we are here).  Madi has been having some odd nighttime behaviors, like teeth chattering, so we are hoping to catch some episodes while we are here so that they can see if it is seizure related or not. 

This afternoon I got our first batch of feedback.  Basically, Madi has a lot of spikes (aka misfirings) going on.  These aren't seizures, however, they are things that could potentionally turn in to sezures.  We thought that they were primarily on the left-hand side of her brain, by her shunt, but apparently they are all over.  There tend to be more on the left-hand side, however, she has a lot occuring on both sides.  This tells us it is probably not because of shunt placement or anything like that.  She had some episodes of being upset and shaking last night, however, these were not seizures.  We didn't see any teeth chattering yet, nor any episodes of heaving, etc...  Oh, and Madi was also diagnosed with epilepsy during our last neurologist visit (the one before this hospital stay), so we can officially add that to her list :).

The doctor said that he is learning a lot about how Madi's brain works and what types of misfirings are happening, but said there is still more to learn, so he wanted us to stay tonight.  I'm not sure if he will want us to stay another night or not, it just depends on what we see tonight.  He said we will take it day by day.  We were told it's 3 days usually, unless you see something early-on and go home early. 

We have had lots of guests and are very thankful for the distraction, as Madi cannot leave the room (and I can't leave to eat unless someone else is here sitting with Madi).  On Wednesday, my mom came to visit.  Today Sharri (from the local spina bifida association) came, as well as our friends Leslie and Ryan, David's parents and grandparents, Conner and David, and our friend's Eric and Darcy and their kiddos.  We have also had some yummy food dropped off (thanks Ryan and Leslie!!!!) and are very thankful for that as well.  Childlife has been very good to us and has been letting us borrow lots of games, puzzles, play-dough, crafts, and other fun things.  We also had a visit from Elvis, a great therapy dog.  I am so thankful Madi is so sweet and easy-going and loves playing so much.  It really helps our days go smoothly.

I'm headed to bed, as sleeping in a hospital doesn't really happen too well.  I will update tomorrow once I know more.  Thanks for praying for our sweet girl!

 

So these are the stickers mom was talking about... SO not impressed (though I did sit nice and still ;))!

 

 

... and now I look like a mummy.  Good thing today is Halloween!

 

 

At least my sense of humor has returned.  I call these my "Happy Halloween" glasses and make sure I put them on for everyone that visits.

 

Can't forget the eye patch!

 

Madi's great-grandma, Uma, whom she loves very much, and Elvis the therapy dog.

Madi's 2nd Seizure and 3rd Ambulance Ride

Little Miss made sure that we had a VERY exciting day today.  She woke up early throwing up and then went back to bed for a few minutes.  I handed her to David to change my shirt and put in my contacts then heard him screaming for me.  I ran in and he said he thought she was having a seizure (she was).  I held her for a few minutes and then she started responding.  She told me she barfed about 20 times and I cleaned her up with a wet napkin, but I noticed she couldn't move her right arm at all and it was just floppy.  Then she went unresponsive again.  We gave her the seizure meds we were given to stop her seizures but she didn't seem to be responding to them, so we called 911.  She fell asleep shortly after we called them.  They came and checked her out and said she looked good but they recommended we take her in (and we agreed as her right arm was still floppy and her left eye was twitching weird) so they loaded her and I onto a gurney and into the ambulance.  Once we got in the ambulance, she regained function of her left arm. 

The first thing we checked in the ER was her urine and her shunt, both of which came back fine.  They said that she would probably have a "big" MRI and another EEG, but sent the neurologist in to talk with us.  He reviewed her past EEG and said that her abnormal firings are coming from the area of the brain where her shunt enters her grey brain matter.  He said her shunt is working fine, but that any time something abnormal happens to the brain matter or enters the brain matter, it puts you at risk for seizures.  Her body sees her shunt as a foreign object, obviously, so it reacts to it.  He said that there is about a 3% chance of a child seizing from their shunt when it's not actually malfunctioning, and Madi, he believes, is part of that 3%.  So, basically, moving the shunt probably won't help, as we would just be entering a new area of brain matter.  If, at some point, we decided to do a third ventricularoscomy (don't ask me if I spelled that right!!), that would probably take away the seizures, IF it was successful.  He said that the area where the shunt was would still leave a "scar" of sorts, so it may not help, but it would most likely help. 

When I was describing what happened to the neurologist, he said he believes her seizure actually started when she started vomiting.  That would mean she had another abnormally long seizure.  He wants her on anti-seizure meds from here on out for at least a few years.  I'm a more naturally-minded momma, so the thought of more meds makes me want to cry, but so does the idea of more seizures.  He said that he's not concerned about the frequency of them, but more at the length of time they occur for.  He told me that if she continues to have long seizures then it will change that area of her brain over time.  He said the problem comes when a child has had them long-term and becomes a teenager.  They start to have difficulty controlling them and can't always stop them any more.  I asked about how often the medication helps control them, and he said it works in about 65 to 85 percent of children.  The neurologist said that he didn't feel another EEG or MRI were necessary and sent us home.  Madi said he ("the man with the spiky hair" as she called him) was her best friend, because he got her water :).  We have to go back and see him in a few weeks. 

They also checked Madi out to see if she had a stroke, but they are sure she didn't, as she didn't have any facial drooping and she regained function so quickly.  They said temporary paralysis is a side-effect of seizures sometimes.  Though it's not super common, they see it fairly often. 

The other fun was that my phone was mostly dead today when I left in the ambulance and it totally died after I called Madi's OT and told her not to come for therapy that day.  I had grabbed my phone charger, but my phone wasn't working from the hospital, so I couldn't call in or out.  I could have used the hospital phone, but Madi was hooked up to wires and didn't want out of my arms (and was asleep a lot of the time), and I couldn't reach the phone from the bed.  I texted David and asked him to call my parents, but the text didn't go through.  He didn't think to call my parents, so they didn't even know we were in the hospital! 

So that was our fun for the day!  Please keep little miss in your prayers.  She is back to her normal, spunky little self, thank God!  I am also very thankful right now for video baby monitors, and for the fact that she pretty much just still sleeps in my bed.  There are few things greater than peace of mind!

And it lit up my day

Today Madilynn smiled her first real smile...

and it lit up my day!

Being stuck in a hospital room for an extended period of time is hard.  Anyone who has been there knows that no matter what color they paint the walls, no matter how cheery the nurses are, and even having a window in the room cannot really make the hospital look any more cheery.  When Madi smiled, though, the whole room glowed!  Of course the second I grabbed the camera she stopped.  I am praying we get to go home today.  I'm getting quite homesick and because of RSV season I haven't seen Conner since Thursday, which is really hard.  I miss my favorite little man!  No matter what happens, though, I know God has a plan.  I'll have the memory of my little Madi's first smile to brighten my day regardless.  

Today is looking good!

(I have Madi in a big bed so we can snuggle and co-sleep :))

Our cultures are still negative, the cat-scan shows the shunt is in place correctly, and her fontinel is soft, so...

As long as Dr. Shaffron things everything looks good when he gets here to check her out, we get to go home today!!

We had a few clowns from the fiesta bowl visit us today.  The woman clown kind of lingered around a bit like she wanted to tell me something but was hesitant.  She finally got the courage to talk to me and told me not to worry, 2009 would be a great year for us.  I am praying that she is right!  Madi and I have spent over 50% of her life time in the hospital so far and I am ready to enjoy my beautiful baby in the comfort of my own home.  I am so thankful that we do not have any signs of infection.  God is good, all the time!