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Showing posts with label therapy. Show all posts
Showing posts with label therapy. Show all posts

Friday, January 27, 2017

One Giant Update with TONS of Pictures

We've been so busy, I'm not exactly sure where to start!  Instead of doing individual updates, I'll try to just do one big update, so bear with me!

In December we took the kids to the Moscow Ballet's Nutcracker.  I'm a huge fan of giving them as many experiences as I can, and was so glad we were able to go.  All the kids really loved it, especially the girls.  In hind-sight I should have told them the story before we got there, as there were no words so they were a bit confused, but they loved it anyhow.  It was fun dressing up fancy and going together. 




My aunt treated us to a bike ride to look at lights and that was a lot of fun.  The girls loved shouting "Merry Christmas" at everyone, and definitely spread Christmas cheer.  Conner had a lot of fun as well, and really loved the whole house decorated with cats. 




We also went to the Reed Park Zoo to look at their zoo lights display with another homeschooling family from our Church that we enjoy hanging out with (they have 3 boys, so Conner is in Heaven when we are with them).  The kids loved the lights, and Pokémon was by far Conner's favorite.  The girls preferred the carousel, though they loved the lights too.





The week before Christmas we did a quick turn-around trip to see my Nephew before Christmas.  We met him at the LEGOLAND Discovery center and tried that out for the first time.  They have a few rides, some guided builds, a 4D movie, as well as some free-build themed areas.  We had a lot of fun and I know we will be back. 






Deena loved her first Christmas home.  It was so full of excitement and wonder for her.  I loved watching her eyes light up with each tradition she participated in.  I made sure to order a few adoption and India ornaments for her so that she had ornaments on the tree as well.    She loved decorating the tree and also loved sitting by it.  She would carefully touch each ornament, and asking for the story behind them.


We went to Phoenix for Christmas this year, so we celebrated as a family early.  We totally blew the Christmas budget (like blasted it right out of the water....  thank goodness for Christmas sales) and got the girls each their own Fisher Price Wild Thing ride-on toy.  They are hand-powered and such fun toys.  They LOVE them!  The road by our house is very rough, so there's not much they are able to ride on out there, as it's too rough for wheelchairs or plasma cars.  They LOVE riding their bikes (now to get Deena one too!), but want to go far in them of course because they go FAST, so these give them something to play in the front yard with.  It works great on a bit of a rougher terrain so it's a great option for them.  Conner got a hoverboard for something to play outside with too.  They are the happiest kiddos on the block! They are also the only kiddos on the block, but I know they would be the happiest regardless.  Every time they are on them they just giggle and giggle.  It makes every penny worth it! 



We enjoyed our time in Phoenix with family and the kids loved celebrating Christmas so many times. 





Madi had a seizure after the holidays, which was a bummer.  We were hoping her new medication would stop her from having more.  When we had tested her levels, though, they were on the low side, so we increased her dosage with hopes that her seizures will finally be under control.  We took her to the ER after her seizure, just to be on the safe side, but thankfully she had come out of it at home with her rescue meds and oxygen.  She probably didn't need to go to the ER, but her teeth kept chattering and we wanted to be extra sure she was done seizing since we had maxed our her rescue med dosage at home.  We weren't there long, and she didn't need blood tests or anything, so that was good.  Once we got home she came down with a fever and threw up multiple times, so I think she was just coming down with the flu.  She doesn't normally have seizures with the flu, but she likes to keep us guessing :).  We are praying this is her last one!


On January 2nd we celebrated Deena's first year home.  She chose Indian food to celebrate and had requsted idli, which our normal go-to Indian restaurants don't carry.  Thanks to Google we found a great little family-owned restaurant/store with authentic food that makes both idli and dosa.  She was in Heaven and really enjoyed herself.  I can't believe she's already been home a year.  She has adjusted so well and is such a sweet, loving, and smart girl.  I'm so thankful that she is ours! 


Conner's birthday was a few days after Deena's adoption day.  We took the family to the Pima Air and Space Museum for a space shuttle model build, then went out to Oregano's pizza for some gluten-free yumminess.  He also had a friend spend the night and it was the perfect day.








Because the fun never ends, 3 days after Conner's birthday we celebrated Deena's 9th birthday.  This was her second birthday home, as she came home the day before her 8th birthday last year.  This year she was SO excited for her birthday.  She wanted to go back to the Indian food restaurant we had found, so back we went.  I think we have found her new favorite place for sure.  She ate idli, dosa, AND naan, in addition to sambar and chicken tikki masala.  She left with a big smile and a very full tummy. 



Deena had another PAM infusion, which she gets quarterly.  We are so thankful that she is able to get them in our home and that we have been blessed with amazing nurses who get her IV quickly.  She does so great with the infusions and we love that we can help make her bones a bit stronger.



I decided to take a day off of homeschooling and take the kids to the Children's Museum for a few hours since we hadn't been there yet.  A few hours turned in to the entire day, but they were having so much fun I didn't want to tear them away.  We went ahead and purchased a membership, since it was almost the cost as a one-day trip for us anyhow.  It's a small museum but it's not too far away and it's well done.  They are anxious to go back and play some more.









We had some good friends, the Thompsons, come visit and spend the night with us.  We have been missing our dinners and time with them and it was SO nice to relax and have their company.  The hardest thing about moving has been being away from friends and family.  It does all of our hearts good when we have company.  A few weeks later we had a visit from Kyla, our friend and unofficially adopted teenager (that's now an adult), who lived with us for a year before Ramya came home.  She is like family to us and the kiddos really loved having her here for a weekend.  I had told her if she came to visit I'd take her to get a few tattoos she's been wanting.  I decided to also get the one I have been wanting for a while.  We went to Jay at Sanctity tattoo, as he was recommended by the pastor of our Church and I know he does a great job.  I got "walk by faith" tattooed on my right foot.  I often think about how different our lives would have looked had we listened to what the world told us to do, instead of walking by faith and following God's plans for our family.  Our greatest blessings have come from stepping out in to the (often scary) unknown and trusting that God would see us through.  It's not an easy thing to do; something I fail at on a regular basis, but it's a blessed journey indeed.  I love how it came out, it's exactly what I was envisioning.






Conner and Deena wanted a combined friend party and asked to go to Build-a-Bear with their Tucson friends.  Since it's so costly there, it worked out great because it was less kiddos.  Costco also had a special around Christmas where you got $100 at Build-a-Bear for $70, so that came in handy.  All of the celebrations, combined with the cost of Deena's surgery and Christmas has been a LOT lately.  I'll gladly take any money off I can get!  Deena really enjoyed having a real party this year and was on cloud 9 the entire time.  Conner said it was his best birthday yet.  We also watched a Star Wars movie, ate pizza, and had ice cream sundaes.






Last week we had 3 appointments in Phoenix, so we also celebrated Conner, Deena, and my nephew's birthdays with family.  We just had a simple family lunch at the park, but it was fun.  My sister-in-law makes the most amazing cakes and the kids loved them.  We also had a piñata and, hey, who doesn't love a piñata?!?!?







Yesterday Deena's first new-to-her wheelchair came in.  She loves it!  Ramya's new Rifton Mobile stander also came in.  It's really big, but should fit her ok for now, and it gives her lots of room to grow.  It doesn't fit through some of our doorways in the house, which I hadn't though about, but it will work great for using during homeschool, in the kitchen, etc...  I love that the girls can be up and weight-bearing, but can also have independence and mobility.  Our Rifton mobile standers are probably one of my favorite pieces of equipment for the girls.  As an added bonus, Deena fits great in Ramya's old Rabbit stander, so all 3 girls will officially have a mobile stander to use. 



I think that's about it for the fun "stuff".  Other than that, we've been chugging along with our therapies and appointments.  We took a break from vision therapy because Ramya was too overloaded and needed a break.  We are still doing her exercises at home and are continuing to monitor her.  So far she is continuing to make improvements but has been less anxious, so that's been big.  Between too many therapies, the holidays, and Deena's surgery, she's been regressing and struggling a lot. We are trying to be very intentional about rocking her and spending time with her, and she also has an attachment therapist that's been helping us work through things.  She got to take a month off of feeding therapy because she was doing well, so that's HUGE!  She's regressed with her eating again, but not nearly like it was before, so we are thankful for those improvements.  She hasn't gained the weight she lost back, but she hasn't lost any more.  We also have a naturopathic doctor helping us with some natural supplements and things to help with her anxiety.  To celebrate her eating, the feeding therapist came to the house and we made brownies together.  She had fun and it was nice to have a positive celebration in relation to her eating, since it's been a struggle for her since, well, before she even came home.




As you can see, we have been crazy busy, which is why I haven't updated for a while.  We appreciate all of your support and prayers, and promise to try to be a little better with updates :)

Friday, March 4, 2016

A Few Quick Updates Because SO Much is Happening

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

Madi:

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

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


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


Ramya:

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

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

Deena:

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

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

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

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

Conner:

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


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

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

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

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



We are blessed indeed!!




Wednesday, March 2, 2011

Little Miss

Little Miss is two.  I know, I know, she's been two for quite some time now.  What I mean is, Little miss is two.  She knows (most of the time) exactly what she wants, how she wants it, where she wants it, and, occasionally, why she wants it.  She is still nursing, though it is not very often any more, which makes me a bit sad (not because I think I'll miss it, but because I know how much good it does for her and I worry about constipation and the such once she stops).  She is developing such a little personality and it is really awesome to watch.  She tells jokes, then makes sure to tell you "I funny", just in case you missed it.  We are working on asking, not demanding, and she is getting pretty good at saying "please".  She is also great at "thank you" and has an "I love you" that will melt your heart.  So, without further ado, here are some updated pictures, as well as some updates, on little miss:
 

Madi, Cousin Micah, and Conner

Madi being her silly self

Messy play at it's finest

A trip to the Science Center with Hope Kids

Here dad, this peach is healthy, you eat it.  I want the donut.

Such a little helper

Working hard and playing a little too

Madi's HKFO adjustment.  I had the back cut wayyyyy down because it gets in the way.  She is doing great without that portion of her HKFOs, but at our next adjustment, I want Ron to lob off the top sides too.  She needs the support around her lower torso, but not up her back.  Ideally I'd like her to be able to sit in her car seat with her HKFOs on so that we are not always doing the in and out thing, and also to encourage her to stay in them and use them while we are out.  If we cut off the top sides, this should be totally doable.  Right now I cannot get her positioned in a way I feel is safe because the top part sticks out.  Oh, and they look loose because I haven't been using the top Velcro to get her used to not having it, but also so that she can sit in them better.

We love the learning tower!


Making gluten-free, dairy free bagels and "cream cheese"

Bean time.... dad's favorite time ;)

Poor little guy got an abscessed molar that had to come out.  He spent a few hours sleeping on my like this afterwards as the dentist didn't want him laying down flat, and Conner just needed mommy.  He's such a lovey 4 year old!  I have to keep myself strong for Madi (and hopefully Manasa ;)) so this is good practice.

We are rushing to get everything in line for our home study.  We got fingerprinted on Monday and, of course, Conner had to get "fingerprinted" too.  The lady that did our prints was such a good sport and did Conner's prints for him too.  He is very excited for our upcoming adoption (fingers crossed!!) and has promised to be helpful and a good big brother.