My Momma Never Said There Would Be Days Like This....

If you've wondered why I've been so quiet lately, it's because we've been really busy!  It seems that each day is filled multiple appointments and/or multiple therapies lately, not to mention homeschooling, homeschool co-op, neighborhood group, Church, and the rest of "life".   I'm looking forward to it calming down a bit within the next few weeks.  For now, we are just enjoying and cherishing moments of joy and togetherness amid the hustle and bustle.

As for medical updates, we have a lot!!  Adoption updates are slow.  I'm working on some paperwork and we're waiting for some approvals, and that's about it.  We go in for our Biometrics in a few weeks and then hopefully things will move a little faster.  I also hope to get a bunch of paperwork notarized at the bank next week, as well as at the doctor's office.  The paperwork isn't due yet, but I want to keep plugging away at it in hopes of having it done when the time comes so that it doesn't hold anything up.

And now for the medical "stuff"....

• Ramya got fitted for her first wheelchair a few weeks back.  She has been using Madi's old chair, as she still fits in it, but the wheels have started crumbling.  We could buy new wheels, but she's finally growing and won't fit in it much longer anyhow, so the time has come to get her a new one.  She picked purple, of course, and is very excited!!  We should have it in about 2-3 months.
• The 3 kiddos got eye exams a few weeks back.  Ramya's eyes are adjusting well to her new glasses and the strength.  We are starting a taping exercise to help re-train her muscles and hope that works well.  We are really hoping to avoid an eye surgery and are trying anything we can first.  Conner has a hard time converging his vision/eyes, but it's minor, so for now we are watching it and hoping he grows out of it.  Madi's eyes are just fine!  Conner and Madi were really hoping for glasses so they are a big disappointed that they do not need them.
• Ramya has been undergoing a series of psychoeducational tests over a few days and weeks at the Melmed center to determine where she is at educationally and how we can best help her learn.  The test was pretty consistent with the testing done at the school district and what I'm seeing at home, however, it gave me more detail about how to help her learn.  Her lowest areas are working memory and fluid reasoning.  Her strength is quantitative reasoning.  She does best when she has visual cues and has a visual plan, so I am going to make a bunch of "social stories" in picture form for her (aka.... pictures of how we brush our teeth, how we get dressed, how we eat, our daily schedule, etc...).  I am also supposed to start working on environmental print so she can start identifying and learning sight words based on commonly used objects (chair, table, door, plate, etc....).  Other than that, I was told I'm basically doing what I should be doing when it comes to working with her.  I would like to find a tutor for her that can come to the house a day or two a week that is knowledgeable in working with kiddos with learning struggles that can also help me with strategies for helping her learn.  I know that the testing is skewed for her and that she will test lower just because of her language, so I'm not too focused on the numbers she got, but I do want to help her learn in ways that best work with her learning styles and abilities.  
• Madi and Ramya had follow-up appointments with urology and both girls are doing well.  They go back in 6 months for renal ultrasounds and another visit.
• Ramya was evaluated for speech therapy and qualified.  Her articulation is great, but they will help her with language processing and things like that.  She had her first session and enjoyed it!  We were able to find someone that does in-home therapy, so I'm happy about that.
• Madi got her new HKFOs from Ron at Hanger and they fit her really well.  Ramya also got hers widened so they are fitting her much better now.   They are both happy girls!  And of course, we went to urban cookies afterwards for vegan gluten-free donuts, so that made them especially happy!
• Cranial sacral therapy, occupational therapy, attachment therapy, and physical therapy are all  going well and the girls are doing great!  
• I think I finally got to the bottom of our appointment mess and how to coordinate the girl's appointments.  Basically, Madi is AHCCCS for her secondary insurance and she is supposed to go to CRS (children's rehabilitative services) to see her doctors.  Ramya is finally on AHCCCS but was never put in CRS.  Because of this, we were still having to make separate appointments out of different offices even though they see the same doctors.  Ramya should have also been put into CRS, but after many hours of calls, we found out they coded Ramya's disability differently than Madis, even though their primary "labels" are the same, so Ramya never got put on CRS.  We think it's all fixed now and an application has been submitted, so hopefully she will get in as well (she should) so we can start coordinating appointments better.  
• Poor Madi got two spots we think are staph.  One is by her mouth and one is in her pull-up area just under and to the left of her vesicostomy.  We aren't sure how she got them, but considering she rolls on public bathroom floors with her wheelchair, I'm not too surprised.  I always wash her hands, but then she touches the dirty chair  wheels (she is always playing with the wheels though she actually uses the little railing for wheeling). I am going to start disinfecting the wheels when we leave the bathroom to help avoid this type of problem in the future.  Our naturopath prescribed an antibiotic cream for her, and I have her on colloidal silver as well.  It's just about all cleared up.  The tricky part has been keeping the area below her vesicostomy clean and dry, so she's been having lots of  un-clothed time to air out.  I use waterproof pads and prefolds under her on her little chair, then a rolled up prefold over her vesicostomy that I change often.  At night, I use a waterproof pad under her with moisture-wicking material on top and absorbency, then prefolds under her and on her vesicstomy, and I change them about every 2 hours.  I'm not sleeping much, but it's working and keeping her dry.  I also am doing insane amounts of laundry, but it's worth it, because the spot is almost gone.  I'm really hoping to avoid oral antibiotics unless we need them.  
• Ramya's food panel finally came back (LONG STORY) and it's not showing allergic reactions to beef and pork, but it could be because we eliminated those foods after her last testing.  For now we are going to continue to avoid them and then slowly reintroduce and see what happens.  I'm praying her gut is finally healing and she will be able to eat beef and pork again, in addition to the many other foods she cannot have.  
• David and I got tested for the MTHFR gene mutation and each have it to a degree.  That's a big post I will post later and talk more about, but it makes a lot of sense.  We are staring supplementation with methylated folate and methylated b vitamins for ourselves and the kiddos. 

I think that's all of the big updates from the last few weeks.  Don't forget to join us for the rock-and-roll for spina bifida on November 8th... go team Double Trouble!!

Our Appointment at the Melmed Center and Our New Eating Strategy

Today I took Ramya for her appointment at the Melmed Center.  We made an appointment at the recommendation of the school district when Ramya underwent her testing there.  My goal was to gain practical strategies for helping her learn, since we homeschool and I take my job pretty seriously ;). 

The developmental pediatrician we saw was a really nice doctor who was born in Pakistan but had extensive knowledge about adoption, orphanages in India, and common practices in India.  I was so glad!  She spent about an hour and a half with us talking about everything Ramya.... behaviors, attachment, history, learning, eating, and anything else we could think of.

We just started a new eating strategy with Ramya that I devised (I'll post more about that below) and I got a chance to talk to the doctor about it.  She said she thought it was perfect and she was really glad to see I was already doing what she would have recommended.  Yeah!  Since attachment issues and eating issues are all new to me, I feel like I'm flying by the seat of my pants sometimes.  I read a ton of books but the practical day-to-day implementation and hands-on practice of what I read just feels totally new to me.  It was very reassuring to hear that we were doing ok!  She liked our approach to the milk as a daily "extra" for weight gain and didn't think there was anything to add there.  I talked to her about our GI visits and my concerns there and she totally agreed with me that GI is not a good fit for us, as they do not really understand Ramya and her unique background.  Whew!

We discussed Ramya's learning needs and the doctor recommended that we get a psychoeducational evaluation.  The test is not covered by insurance and is very expensive, but I feel it is important and want to go ahead and get it.   The test will give us the specifics of the areas she does well in, the areas she is low in, what ways she learns best, how she processes information, etc...  It's 2 days of testing, at 2 hours per day, then a day to go over the results.  They will give me practical strategies and approaches for teaching her and helping her learn.  Though I cannot say I am looking forward to it, I know that the information we get from the testing will help me to know how to teach her and how to best help her learn and is really important for me to know. 

Another topic we discussed is Ramya's behaviors (things like lying, being controlling, attention-seeking behaviors, eating issues, jealousy, tantrums, etc...) and she felt like they are totally normal for a child with her background, which I totally agree with.  I basically told her it's all stuff we anticipated and nothing I thought was out of the norm.  I told her our strategies at home and she said that we were doing what she would recommend and just to keep it up and be consistent.  She is hopeful, based on what she saw in our interactions, that the behaviors will taper off after about 3-4 years of being home with us.  She said right now she is still trying to figure out if this is forever, and what exactly forever means, which I agree with.  I still feel that she is trying to figure out "family" and her role as "daughter" and "sister". 

The doctor recommended getting a hearing a vision test, but not through the district, which is what we did in the past.  I already had the vision test scheduled with Dr. Glonek next Tuesday so I will schedule the hearing tomorrow so they are both on the calendar.  Other than that, there's not much she recommends.  She said she could diagnose her with ADHD if we wanted, but that she recommended waiting to see if she has attention issues or if it is processing issues that are exhibiting as attention issues.  I told her a diagnosis wouldn't change anything anyhow, and that I wouldn't want medication anyway, and that I'd rather not diagnose her at this time, and she was fine with that.   We will see her again in 4 months to talk about the testing results and see if there is anything further she recommends. 




So back to the eating...




I have been thinking  (and praying) long and hard about our eating struggles.  Ramya has been spiraling since my hospital stay with Madi and things had gotten even worse in so many areas, especially eating.  The control over food and attention-seeking behaviors with food were over-the-top.  I just came to the point where I wanted to break down in tears because every meal was so terrible.  Hours and hours and hours every day.  It was hard to just sit down and have fun after meals because I was so tense and the rest of the day was so rushed.  I smiled, we played, the kids had fun, but felt it was fake and really wasn't feeling happy, that's for sure.  I was just trying to fake it until I could make it real, if that makes sense.  With homeschooling, therapy, and appointments, life can be busy anyway, but add in hours of eating every day and it was terrible.  I knew that something had to give for not just mine and David's sanity, but hers as well.  It's so hard with her because positive feedback or negative feedback for food get us in the same spot... it gives her power over us and power with her food, which leads to control over food and refusal to eat when she feels she needs control.  I decided the best thing we could do is stop giving any attention to food, positive of negative, so it loses it's power.

When meal time comes, we pick out what goes on the plate together and I make sure she has what she needs on the plate (meaning something with protein and healthy fats, fruits or veggies, a grain, etc...).    I set a timer for 30 minutes and I sit by her.  We talk about our day, what we will be doing, funny things that happened, anything and everything, other than food.  I do not ask her to take bites.  I do not tell her good job.  I do not remind her that her body needs food to grow.  I do not give her any feedback on how she is doing.  She doesn't like the lack of attention with food, so when she tells me something like "look mom, I took a bite", I just tell her, "Remember that mommy is not worried about food, so you don't have to tell me, it's ok.", or something to that extent.  When the timer gets to 25 minutes, it automatically gives a warning and turns yellow (it glows green up until 25 minutes).  Then, when time is up, it gives another warning and turns red.  This way the timer is giving the reminders and she is managing food herself, instead of it coming from me (or David, since we are both using this strategy).  At the end, eating time is over and I put the food away.  Of course I still need to make sure she is getting enough calories, so if she hasn't eaten enough, I give her some extra of her high-fat and high-protein milk so that she is still getting what she needs, but without any positive or negative pressure with food.

We have only been using this strategy since the start of the week, and of course I do expect some testing of boundaries with it, but my hope is that staying consistent will mean no more food battles and more quality time together.  I really believe that we need to get to the root of the food issues and try and heal what is causing them.  Hopefully having less time on eating will mean more quality time together to just enjoy each other and work on attaching and bonding.  So far it is working well and she is eating the same amount of food as she ate before, but it takes 30 minutes instead of 1 1/2-2 hours.  Because she would wait for either positive or negative feedback to take a bite (or hold it in her mouth if we weren't looking, because she knew she wouldn't get feedback if we weren't looking), eating took forever.  And when she wanted attention (so constantly ;)) she would not eat to get that attention.  But without that part, eating takes so much less time.  That, of course, leaves us more time for playing, dancing, rocking, homeschooling and just being, which is what we needed.  I am seeing her strong need for control change shape now, which isn't great as it's targeted towards Madi and Conner quite often, but we will get there slowly but surely.  I try to give her lots of appropriate choices throughout the day so that she has some control.  Though it doesn't solve the problem, it does help, and I know it will all just take time.  I also try to give her lots of appropriate attention in other areas which helps.  Ramya is such a sweet and fun girl, so enjoying time with her is easy!

So that is that for now.  I have some big announcements to make, but it's almost 1 a.m. so those will just have to wait.  Please continue to pray for our family as we continue to grow as a family of five.  Even though it has been almost a year and a half since we officially became a family of five this process of learning, growing, and healing will be ongoing for years for all of us.  Please pray for wisdom and guidance as we go continue on this journey together, as well as for lots of peace, healing, and joy.  Thank you!