A Quick Deena Update

Saturday, the day after Deena's surgery, she was pretty tired and puffy still.  She stayed awake most of the day, wanting to spend time with her siblings and dad, but you could tell she wasn't feeling amazing.

We talked about doing a blood transfusion because her levels were still on the lower side.  The doctor left it up to me to chose, so I asked to give her another day and see how she did.  He agreed so I just watched her closely.  She only needed oral pain medication; she's so tough!  Physical therapy came and evaluated her and then we ordered a temporary wheelchair with elevating leg lifts, which came in late Saturday night.  Other than Deena feeling well, it was the big "thing" she needed to be able and go home when she was ready.  I always appreciate being prepared to discharge and not having anything holding you up!  I also realized her leg wasn't going to fit in her carseat, so David ran to grab a high-back booster from our friends.   

By Sunday, Deena was a different kid.  She was more awake, talkative, and energetic.  She wanted to take a walk and go to the Playroom, did lots of crafts, her appetite was up, her swelling was down, and she was very eager to get home.  We were discharged Sunday and she was SO excited to be heading home.

Deena has been doing well since coming home.  She is taking her oral pain meds, but has minimal pain when she is on them.  She isn't waking up and asking for medicine, so I can tell she is feeling better.  She's also been more active and I've already reminded her that she just had surgery and should take it a little easy.  She does still have a temperature of about 99 degrees, so I'm keeping an eye on that (she's had a higher temp since surgery).  The doctor put her on iron to help rebuild her system, and I've doubled her Juice Plus supplements to help her heal. 

Deena is doing well in the booster seat.  I rolled a small blanket to go under her cast and that seems to keep the pressure off well.  We were able to take a small trip Tuesday to eat lunch with my brother, since we haven't seen him for a bit, and she did great with no pain.  It was good to hug him and spend time with him, and Deena enjoyed some down-time in the car to play I-pad. 

Deena's Spica-type splint will stay on for about 3 1/2 -4 weeks.  The orthopedic surgeon is going to help me undo it all in his office after that and see how she is doing and healing.  At that point, he will determine what kind of splints she will go in to, and for how long.  If she's doing well, I may be able to remove those temporarily to bathe her, and then put them back on.  For now, though, it's sponge baths and hair washing in the sink.  I can't wait to see how straight her legs are. 

I think that's about it for now!  Thanks for all of the prayers for our sweet, strong girl.  We really appreciate them!

Busy, Busy, Busy Bees

As usual, we have been keeping ourselves quite busy.  We've had quite a few appointments and have found lots of fun things to keep us from betting bored.  I'll update with medical first, and then get to the fun stuff.

Medical Updates:

Ramya and Madi had their first appointments with our new orthopedic surgeon, Dr. Vincent.  Both girls are doing really well and nothing big is needed right now.  Ramya is due for a small wheelchair and HKFO (Leg braces that go up to the back) adjustment.  She hasn't grown much, but just enough to need a small tune-up.  Ultimately we think Ramya will be able to use AFOs to walk, but her strength, leg muscles, and confidence isn't quite there yet.  The doctor asked if I would like to put her in AFOs (for therapy) and start using those instead of the HKFOs.  My gut tells me she's not quite ready, though.   She still has some major fears of falling we are working through and she still fatigues very quickly, but I asked if we could go ahead and get AFOs to start working with, but also keep up with her HKFOs for now also, so that we have options with her mobility and therapy. He agreed, and I got her fitted a few weeks back so those should be ready any time now. 

Madi has grown right out of her HKFOs and we have decided to try RGOs (reciprocating gate orthotics).  They will be similar to the HKFOs but a bit heavier and more sturdy.  Because they are heavier they should give her more support and keep the metal from bowing so much.  We chose not to use them when she was little because she was so tiny and we didn't want to add any extra weight to her leg braces, but we are hoping this will actually give her more stability and help her with her walking now that she is bigger.  She also got fitted a few weeks back so we should be getting them pretty soon. We are very lucky that Ron, our favorite orthotics maker at Hangar in Phoenix, has a brother here that owns Hangar in Tucson.  We were able to get in to see him and I know he will do a great job with the girl's orthotics.

Madi has also grown out of her current wheelchair so we will start working on getting her a new one.  She needs something lighter weight that moves with her better, so I'm looking in to different chairs for her.  I would love to get her a Box chair, but insurance does not usually cover them. That doesn't mean I won't fight for it, though ;). 

The kiddos had dentist appointments to get their teeth cleaned.  The dentist just told me she doesn't think she can help Deena, though, because she thinks she will have to go under anesthesia in the hospital for her dental work (she has multiple rotten/broken teeth and her poor mouth is a mess), so we are searching for a new dentist for her.  Dental is hard with OI because it's hard to find a good dentist that has any experience with kiddos with OI.  I have a few calls in, so we shall see.  Ramya's little mouth is a mess too.  She holds food in her mouth, didn't have dental care before coming home, used to grind her teeth really bad when she was mad, had adult teeth come in without loosing the baby teeth, had her 11 year old molars come in when she was 8, and her mouth is very very crowded.  We already pulled the baby teeth since they weren't budging and they were causing her a lot of gum pain (the grown up teeth were pushing forward and the gums were getting pinched between the two sets).  Next up is dealing with a cavity she has, getting her sealants repaired, and getting her in to an orthodontist to see about expanders.  I realllly wish we had dental insurance right about now.

Ramya started vision therapy, so now both Ramya and Conner are in vision therapy on Wendesdays.  Conner finished his first 8 weeks and has made huge strides, but still is reversing a lot of his letters.  We start a new 8-week round with him this week.  Ramya needs intensive one-on-one therapy, versus Conner's group therapy, because having a lack of visual stimulation when she was tiny lead to eye muscles not coordinating and working together correctly.   Her homework right now is to watch a show on the computer using special red and green filters and special glasses.  When she's having a hard day, I put on a calming video with calming music from youtube and it not only helps her with her emotions but it also helps her eyes, so it works out great.  I have to say, I also really wish we had vision insurance. 

Tonight Preferred Homecare delivered the medication and supplies for Deena's first PAM infusion at home.  She will get them quarterly to help with her bone density.  We are so so excited to see her bones get stronger!  Her first infusion was supposed to be tomorrow but they had staffing issues, so it is now on Thursday.  I'm praying they get the IV in quickly, on the first try, and that she doesn't have any major side effects from the infusion. 

The Fun Stuff....

Now for the fun stuff!!  We tried wheelchair tennis with JAWS and the kids really loved it!  Soon they will change to wheelchair basketball and the kids are excited about that too.  Med students from UofA come and play with the kids, and siblings are allowed to use chairs and play too if they would like.  Conner was in Heaven and had so much fun using a sports wheelchair too. 

We had friends from Sweden visiting in the US and they were able to make a stop in Tucson to meet with us.  Their son, Arven, was in Ramya's second orphanage with her (Ashraya).  Though Ramya does not remember her time in that orphanage very much and did not remember Arven, it meant so much to her to have that connection and get to see him.   Ramya moved so often between being in 3 orphanages and in and out of the hospital during her time in India.  I'm not sure if she just doesn't remember a lot of what happened, or if she has blocked it out, but I know she really longs for connections.  She doesn't remember her friend's names from India and doesn't remember her caretakers, even when we show her photos.  She will tell me she misses her friends, and of course I tell her that it's ok to miss her friends and that I know they were very special to her.  She can't recall any of their names, though, and will tell me the names of friends she has heard Deena talk about, but ones I know for a fact she never met.  Having special visitors was just what she needed!  Now she has a friend she can talk about and remember.  Arven and Conner hit it off right away and Arven ended up staying the night even though the rest of the family stayed in a nearby hotel.  The boys had a blast playing Minecraft together and have decided that we will meet up in two years in Disneyland for more fun.

One of David's brothers and his wife were in Phoenix for 4th of July weekend.  We decided to make a trip down to Phoenix to visit and had a lot of fun swimming and BBQing with family.  We had a fire pit (oh man was it HOT!!!) and Deena enjoyed her first s'more.  Deena also loved her first fireworks and is still talking about it.

Other than that, we are doing some light homeschool activities this summer but are not doing our full curriculum.  The kids have been enjoying extra crafts and science experiments.  We have also been swimming a lot and are happy to have a pool at our rental house.  Deena is like a little fish and has really taken to the water!

(our light up fairy jars)

(bouncing bubbles from our Sick Science kit)

(pendulum painting from Kiwi Crate)

One a personal note...

On a more personal note, it hit me yesterday that I miss having my friends close.  A while back I realized that I wasn't invited to many girl functions any more.  Between our unpredictable schedule, just being plain tired and not always feeling up to socializing, that fact that I stink at initiating things when we are busy, and the fact that I never feel comfortable going very far from home (in case I need to get back quickly for an emergency), I realized I said "no" to a lot of things, and soon wasn't on the invite list.  It was a hard realization to come to (I wrote a post about it if you would like to read it), but it made me even more thankful for the amazing friends that we have who are always there for us.  We were blessed with friends we could invite over last minute, even if our house wasn't perfect.  We were blessed with friends who brought us meals after hospital stays.  We had some really close friends that eat like us, also homeschooled, and had kiddos that our kiddos loved to play with, that we saw often.  I had girlfriends that God had gifted the ability to know when I just needed to talk, needed coffee, or needed a hug, and would always call or show up at just the right time, without ever being asked.  I had some close girlfriends who also had kids with special needs and who totally got it.  We had an amazing Church and homeschool community we were plugged in to as well.   Though I'm so thankful to still be able to talk to my friends on the phone and to visit with them when we go back to Phoenix, I'm starting to feel the distance between us.  I don't have any friends that live close any more, so I have no one to go out with for girl time.  I know I will get there and just need to give it more time.  I was so blessed, and am still blessed, with some amazing relationships and it will always mean so much to me.  We have started to make connections with other families and have enjoyed playdates and social events, so we are thankful for that, and it definitely helps.  We also found a Church we really like, so that's been great.  I'm also thankful for Social Media because it helps me feel connected.  Oh, and I also was given a really sweet letter and giftcards from a neighbor we lived next to for many years growing up.  God knew I needed a little encouragement, and it really meant so much.  A little kindness can truly make a big impact in someone life!

  

I think that's about all I have for now!  Please be praying for Deena's upcoming infusion and I will try to update in a more timely manner about it.  Thank you for following along in our journey and for all of your love and support!

Deena's First Orthopedic Surgeon Appointment

Last week Deena had her first appointment with the orthopedic surgeon.  After she came home with a fracture, I realized how important it is going to be for us to have an orthopedic surgeon close by that was a good fit for her.  I called our orthopedic surgeon in Phoenix, Dr. Goggins, and asked who he recommended here in Tucson.  He recommended Dr. Vincent  and we saw him last week. I am happy to report that we loved him!  He was very pro-walking, had great bedside manner, took his time talking to us and answering questions, and has other kiddos he sees with osteogenisis imperfecta (OI).  I also talked to him a bit on his approach with kiddos that have spina bifida and liked his answers.  I think I will be switching all my girls to him.

(In the waiting room)

 



Dr. Vincent recommended removing Deena's cast (she had accidently peed on it so we were planning on getting a new one), x-raying her to see where she was at with bone healing, and then re-casting or splinting once we saw how she was doing.  The x-ray looked pretty good and there is quite a bit of new bone growth.  He said we could splint or even keep the cast off all together, depending on what I wanted.  Because we are all still getting used to how to handle Deena, I decided a splint was the way to go.  That way she would have the support, but also a little more freedom and movement.  So far it has worked out really well for her. 

(Deena "helping")

 

We spent some time talking about our long-term goals for Deena.  Right now the plan is to go in again in two weeks and check how her bone is healing.  We will also discuss a plan of action for rodding surgery at that time.  She had two femur rods inserted in India.  They had decided she was doing well, though, and removed one of the rods.  Apparently once you insert rods it changes the way the bone grows, so removing them is not a good option.  Basically once you are rodded, you are often rodded for life he said.  The other rod is not in quite right, but it's also not terrible, so he recommends leaving it for right now and then modifying it in the future.  She will also need tibia rods. He wants me to research a bit on the types of rods, how the surgery is typically performed, and decide how many bones we want to rod at once.  He does not recommend rodding the femur and tibias at the same time, because he said there is a settling period after surgery.  He said we could either do one tibia at a time, and then the femur, or go ahead and do both tibias at once, wait a bit, and then do at least the one femur if not both.  He explained to me how he performs the surgery, what the typical hospital stay looks like, what to expect, and all of that good stuff.  He also said he believes Deena has OI type 3. 


I can tell that Deena is already feeling better because she wants to be up walking constantly.  Right now I just hold her, but I would like to get a walker for her soon.  The walkers my other girls use are a little big and bulky for her, so I would like to get her something different.  I am still working on getting her approved for insurance, though, so it will be a little while.  Until then, our days look like this...

 

 

 

In other news, Deena has officially started homeschooling and is doing well.  She has a pretty good attention span and enjoys doing her work.  I am starting her off very slowly, but for now, it's nice to be in a routine again.

 

 

 

 

 

Deena is really sweet and keeps us laughing.  She has so much personality!  She loves singing and dancing, which Madi is really enjoying.  She is doing well expressing her needs and her emotions, which I am thankful for.  She loves snuggling and is a momma's girl for sure.  She is such a blessing!

 

 





 

Two Big Reasons to Rejoice Today

We have two big reasons to rejoice today!

To start with, both girls had appointments with Dr. Goggins, our orthopedic surgeon, today.  He wrote a prescription for new HKFOs for Ramya as she has outgrown her current pair (Which is great news because she is finally gaining weight!!  Her eating hasn't improved, but she is looking so much healthier, building muscle, and retaining new information so much better!  Yeah!).  He also said he signed off on both the girls new wheelchairs, which they were both recently fitted for, so we are excited to get those.  The biggest news, though, is that Madi's scoliosis came in at 42 degrees when standing again (laying down with the pressure off her dislocated hip it goes down to 28ish degrees), which means her scoliosis is stable and right now there is no reason to proceed with detethering surgery.  Of course if she started declining neurologically, started losing function, or her scoliosis suddenly changed we would know the surgery was necessary, but for now, she does not need surgery.  We go back in 6 months and we will check Madi's scoliosis again at that time. 

Here is the second great bit of news today...

 

 

I know that is hard to read, but that is our U.S. approval to adopt from India.  That means we are one step closer to being able to bring "D" home!  I'm almost done with our dossier paperwork and then that will go to India for approval there.  We still have a long way to go, but I love that we are one step closer!

 

 

Please be praying for our doctor paperwork to get notarized correctly tomorrow (wait, today?  I'm up past midnight so often I forget it means a new day has begun :)).  We have had some issues getting it completed so far.  Basically, about 2 or 3 months ago we got full physicals and a blood panel done to make sure we were healthy.  Everything looked great so our doctor signed the paperwork needed for Arizona/US approval stating that we are healthy enough to adopt.  For our Dossier India wants a different form, though, that states (give or take), "Upon examination (insert name here) shows no signs or symptoms of hepatitis, tuberculosis, HIV, or any other communicable diseases."  I called our office, twice, to tell them what we needed.  We set an appointment date, found a travel notary, and showed up to get the doctor's signature notarized.  After waiting about 45 minutes we were told they wouldn't sign the paperwork because we had never actually been tested for hepatitis, tuberculosis, or HIV.  I tried so hard not to get frustrated, but was feeling pretty bummed.  Not only did we have to pay the travel notary anyhow, as well as our co-pays, but I have been going to the same doctor for about 22 years and David has been going to them for about 11 years.  They have done blood work for both adoptions, and we are always very healthy.  Not to mention the form said that it was "upon examination", not via blood test.  However, I do understand the only way to really know is to test us, so we went ahead and got tested.  All of our blood work and testing came back negative, as we expected, so they said they are now ready to sign the paperwork.  I made an appointment for tomorrow, as that is what worked for our travel notary, but I cannot be there as I teach at homeschool co-op.  I asked if I could drop off the form for the doctor/notary, since my signature does not need to be on the form,  and they said that was fine.  Once David got there to drop off the paperwork, though, they had no clue what the paperwork was for once we dropped it off.  Sigh.  Please be praying it all works out and the paperwork is able to be signed and notarized tomorrow, since this is one of the last "big" things I need to do in order to complete the Dossier.

 

Thank you for following our journey and sharing in our excitement! 

 

Ramya's Appointment with the Orthopedic Surgeon

On Monday we trekked back down to Cardon Children's Hospital to see Dr. Goggins, our orthopedic surgeon, but this time for Ramya.  This was her first visit with him as she previously saw Dr. Segal with Madi. 

Dr. Goggin's examined Ramya and said she looks good... her hips seem to be ok, her back seems to be straight, and he agreed with our decision to move up from KAFOs to HKFOs.  He was in a cheery mood and spent a long time with us.  It's so much nicer to see doctors out of their private office, instead of CRS.  At CRS they always seem rushed and stressed, but are always so much more relaxed in their offices. 

After the hospital I decided to take the kids to Butterfly Wonderland.  We have never been, and it's on the way home, so I figured it was about time!  The kids had a blast!  There was a 3D movie, a place you could view chrysalises of all the different kinds of butterflies they get, a really neat habitat with thousands of butterflies in it, a small aquarium, and a few other exhibits with bees, ants, and other desert creatures.  The really loved the 3D movie on the butterfly life cycle and butterfly migration.  They kept reaching out and trying to touch the butterflies.  They also loved the butterfly habitat and got very excited when a butterfly landed on Madi's foot and stayed for a while.  Ramya did NOT want the butterflies to touch her and kept hiding behind me, but she really did have fun too.  She loved looking at the butterflies, she just didn't want them near her.  Here are a few pictures from our visit...

 

(after they emerge, they catch them and put them in the large habitat)

 

 

 

(This is the one on Madi's foot)

 

Conner wanted to make sure that Ramya knew all about scorpions and centipedes (part of their extra exibits).  He insisted on lifting her up himself and explaining to her that if she ever saw one, she should not touch it, get away very quickly, and tell mom.  I made sure to hover just in case she slipped, but he did great and was quite proud of himself.

 

 

 

Our next appointment with Dr. Goggins isn't for 6 months for both girls, and this time, I think I can coordinate them!  YEAH!