Lots of Updates from our Casa

I can't believe how long it's been since I've been on to update.  Life just flies by!  One of my goals lately is to take care of myself in small ways, so I have been using the treadmill again at night.  It's a great way to reduce stress and I love it, but it also leaves me less time at night to accomplish things.  After using the treadmill and doing house work I pretty much fall in to bed, but it's worth it!

The last month has been busy.  We are loving going new places in Tucson and have been spending a lot of time outside enjoying the weather.  We've been meeting new friends and having play dates, which is always nice.  We've also had some trips to Phoenix, appointments, and things like that.

The Tucson Air Show

The Desert Museum

Family pampering day.... Deena's first manicure at a shop and Conner's first pedicure

Last month when we were in Phoenix for Easter we also saw the endocrinologist.  She submitted all of the paperwork to start Deena on her PAM infusions (osteoporosis medicine via IV to help with bone density) and Ramya also got her quarterly Lupron Depot Pediatric injection.  We are keeping our endo in Phoenix, even though it will mean a quarterly drive, because OI (osteogenisis imperfect) is her passion, and you just don't replace a doctor like that! 

While we were in Phoenix we also celebrated Ramya's birthday with family.  She requested a party with just family, so that's what she got!!  Since we don't have a house in Phoenix any more we had the party at the park.  She wanted a princess theme and Indian food.  It was a lot of fun!

Madi and Ramya had their yearly renal ultrasounds and appointments with their urologist.  Both the girl's kidneys look great and we don't go back for another year!  Yeah!  Since we had to drive to Phoenix for the appointment, we decided to take advantage of our drive home to go to the ostrich farm.  David met us there since it's only 40 minutes away from where we live.  The kids had SO much fun.  I think we will make it a tradition!

Deena has exciting news; she got her ears pierced!  She has been wanting them since before she came home, but we wanted to wait until we could take her, and also until she was ready to let me clean them and take care of them.  She did amazing and she is so proud!

In not-so-fun news, sweet Deena was in the hospital with a fractured femur on Monday.  After leaving the teaching store, David bent down to lift her out of her stroller.  She must have leaned forward and she just kind of rolled forward out of the stroller (David said like a little ball).  He tried to catch her but she was in a slippery princess dress and he couldn't get her in time.  The stroller is very low to the ground and has no bars on the front, which I purposely purchased so that we wouldn't bump her legs getting her in or out, so she didn't fall far, and she didn't hit anything, but somehow she fell just right and ended up with a fracture.  David said one leg went behind the other and then she sat on the ground, so we think it was just from the pressure of one leg on the other.   It was terrible even though it was an accident.   It's her first big injury for her since coming home, and we all felt awful, but especially David.  We try so hard to lift her carefully, always give her support, and make sure she's safe, but one of the hard things about OI is that fractures are a part of life, and sometimes it's the smallest things that cause breaks. 

Her left femur used to have a rod in it, because it broke frequently, but right before coming home they took it out.  You never take rods out once a child/adult is rodded though, because the bones are thinner there after having the rods to support them.  Unfortunately, though, they did remove it, and we had been planning to place it back in this summer.

Although it was an awful and unfortunate accident, there were definitely some good things that came out of all of it.

1. Her orthopedic surgeon, who worked at Shriners for 11 years and has lots of experience with OI, PAM treatments, and rodding surgeries, was on call the night we went in to the ER.  He saw her name come up and stayed 2 hours after he was off to be able to review her x-rays.  After reviewing her x-rays the initial plan was to set the bone and then admit us for a night pain management.  After talking, however, we decided to go ahead and use that time to put the rod back in, since we had to be admitted anyhow.  His schedule the next day was pretty full, though (so full that he already had to plan to delay another surgery because he just couldn't fit it in), and he didn't want us to be sitting in the hospital, so he asked if we were ok with just doing the surgery right then.  We said yes, he left to prep, and we went off to surgery prep.  It was getting late so David took the other kiddos home to bed and I stayed with Deena.  They took her back right about 10:15ish. It was a quiet night and I was the only person sitting and waiting in the waiting area.  It gave me time to go through all her medical files again and begin writing down the dates of all of her breaks and procedures so that we could get a better picture of her past medical history. Just after 12:00am the doctor came to talk and said everything went really well.  He got the rod in just how he wanted it.  He left and then they brought me back to be with her.  She was sleepy and slept most of the time.  It took a while for us to get a room, but at about 2:30am we went up and got settled in.  Thankfully Deena slept through it all. I was exhausted, but nothing a little coffee couldn't fix!  The next morning when she woke up she was doing a ton better and said she wasn't in pain.  We kept on top of her pain meds to make sure she stayed comfortable, and she handled it amazingly!
2. I talked with Dr. Vincent and asked if we could do her first PAM infusion while we were in the hospital.  The first infusion is done in the hospital, and then the rest at home.  Since we were going to be there anyway, it made sense to go ahead and start.  Dr. Vincent actually had her infusion paperwork with him, because he brought it so he could ask about the steps to starting it while he was at the hospital.  It worked out great because they were able to start working on getting it in the pharmacy and approved through insurance.  They weren't able to get it all done Tuesday, but Wednesday they were able to give her first infusion before they discharged us. She handled the infusion well and so far hasn't had any side effects.
3. Another blessing out of all of this is the time it gave Deena and I to continue to work on bonding.  I know that she realized the difference it made having her momma there with her.  She told me she loved me more times in a day than I have ever heard before and wanted to hold my hand and have me play with her hair.  Though being in the hospital and surgeries are no fun, it reiterated for her that I love her and I am here for her.  She didn't have to go through the pain alone and she had me right there to help her and advocate for her.
4. They didn't have to remove her earrings for surgery.  This might sound minor but she was SO proud of them and was devastated when they said they may have to take them out.  They were able to cover and tape them instead, and I am so thankful!  Sometimes it's the little things that make a big difference for a child when they are going through major medical stuff. 

My sleepy little warrior princess

She was SO excited for visitors! 

We made great friends with Child Life and love all the fun stuff they brought us to do

They ordered a wheelchair for her to use at home/out-and-about so we could keep her leg elevated

Reunited and it feels so good!

We have been home since Wednesday evening and Deena is doing remarkable!  She was SO excited to leave the hospital.  It was hard on her having the rest of the family away, though they did come visit, and she kept asking me when we could go home.  Her eyes lit up and she got super excited when I told her they were sending us home. 

Deena is already back to her spunky self, her appetite is great, and she seems to be healing well.  We have a follow-up appointment with the orthopedic surgeon in 4 weeks and we will take x-rays at that time to check how her healing is going.   She was getting restless and kept asking to go in the car, so we ventured out to Costco on Friday and she was very excited!

We also went to Church today and she enjoyed getting out and being around other people.  We still bring her in to service with us anyhow, so I wasn't worried about safety.  She enjoyed singing and cuddle time on my lap.

In other news, we found an occupational therapists and are excited to get back in to the swing of things.  Apparently finding in-home therapists, especially speech and PT, is insanely hard in Tucson. I have spent endless hours on the phone calling companies and trying to find openings.  I've even called outpatient therapy centers and everywhere has a wait.  I'm not going to give up, and we are glad to at least be able to start with OT. 

Oh, I also forgot to update and say that Deena is officially on our primary insurance!  Yeah!!  We have already met her $2,500 yearly deductible (it's per person), and I am so so so thankful we got her on in time for the surgery and hospital stay.  Our bills may still not be pretty but it will make an enormous difference.  On top of that, they added her at the rate they would add any child, even though I disclosed that she has OI.  That right there is an amazing blessing!

I think that's all of our big updates for now.  We are on the hunt for a bigger vehicle still, and I think we have decided on a Ford Transit with a turney seat for Madi.  She's a little over 80 pounds now, so this will help immensely with transfers in and out of the car.  Please be praying that we find just the right car for our family.  We have such unique circumstances it's been very difficult to figure out what will work for our family.

For those of you who are friends with me on Facebook, or who knew we were in the hospital, thank you for praying for our sweet girl and for checking in.  God has been taking care of us in big ways, and we are so thankful!

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.  

_____________

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!

_____________

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!!

Updates from our most recent appointments.... Neurology, Orthopedic Surgeon, PT, OH MY!

I just realized I never updated from our appointments last week! 

On Thursday the week prior (the 12th), Madi saw Dr. Goggins, our orthopedic surgeon, at Children's Rehabilitative Services (CRS).  We got some better x-rays so we can better see how her scoliosis is doing.  Her degree of scoliosis when standing in her HKFOs was 42 degrees.  When she was laying down, though, it went to 27 degrees.  He felt it was a good sign that her back is still flexible.  He didn't want to tell me if he thought she was a good candidate for a detethering surgery and he told me he wasn't a neurosurgeon.  This is why I hate that we don't have a multidisciplinary approach here in Phoenix.  Instead of the doctors talking to each other, we talk to each one separately, often getting passed back and forth.  It really frustrates me.  Don't get me wrong, I'm thankful we have amazing doctors here to help us out, but I just wish the doctors would talk  to each other as well in order to come to a conclusion about what they felt was best.  Anyhow.... He felt that waiting 6 months and x-raying her again would tell us more about if she is stable or changing.  He did also say her scoliosis and tethering are in the same area, meaning her scoliosis is likely from the tethering, but we don't know if de-tethering would correct the scoliosis.  He also said that he didn't see any big urgency to do anything about her spine right now, so that was good news.  I have an appointment set for 6 months, but also have an e-mail in to the neurosurgeon to see what he says about her degrees of scoliosis. 

On Tuesday I saw the dermatologist.  I have a few spots I like to keep an eye on (I've gotta keep myself healthy for these kiddos!), and everything looked fine.  Yeah!

On Wednesday Madi saw Dr. Condie, our neurologist.  We talked about her last seizure (she hasn't had one since the one a few months back) and racked our brains trying to figure out if there was anything concrete that could be the cause.  There didn't seem to be any reason, other than she did go through a growth spurt, meaning her dosage might have just been a little low for her.  We are keeping her dosage of Kepra the same, but will adjust it again when she gains weight again.  It was a pretty boring appointment, just like we love!

On Thursday we headed back down to CRS so that Madi could get evaluated by the physical therapist there.  We already have an amazing physical therapist, and are not looking to switch, but we are still fighting insurance to get Madi a medium Rifton Dynamic Stander, and CRS thought this may help.  The PT agreed Madi needs a bigger stander, agrees that it's beneficial for her and could tell she uses it often, and is working on submitting a letter for us with the verbiage they are looking for.  We've been appealing and have not been getting anywhere, so hopefully this does the trick!!

In other news, I got a letter this week stating that Ramya was approved for the department of developmental disabilities (DDD), meaning she will now get a secondary insurance through the state.  YEAH!!!!  This will pick up the out-of-pocket money we spend on therapy every week for her.  It also means I can FINALLY coordinate their appointments.  I had the girls seeing the same specialists, but because Ramya didn't have the secondary, she couldn't go to CRS, meaning she saw them out of their office, and Madi saw them out of CRS, and none could be coordinated.  So awesome that we can coordinate now!!! 

I think that's about all the updates we have for now.  Tomorrow we head to see Dr. Goggins, our orthopedic surgeon, out of Cardon Children's Hospital for Ramya's appointment, so I will update on that appointment soon. 

Have a blessed week!

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!