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.
One a personal note...
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!
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!