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!!
