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 First Attachment Therapy Session, Cranial Sacral Therapy, and Ramya's Feeding Evalutation

This week we had our first attachment therapy evaluation, as well as Ramya's feeding evaluation. 

Our first attachment therapy session went well.  Ramya did her usual charming acts because there was someone new in the house.  She usually tries to charm strangers.  She had her over-the-top fake giggles, was overly-loud to get attention, and tried to wedge herself, physically, between the therapist and Madi to take attention off of Madi when the therapist was talking to her.  The therapist handled it all wonderfully, though, and I am sure she sees it often. 

She got to observe lunch time, which was nice.  Though Ramya mostly ate unprompted, which is unusual for a meal time, it did take her an hour to eat one chicken drumstick (which she really likes to eat), and she didn't want to eat anything else on her plate.  She was very squirmy and would try to ask lots of questions to divert attention to get out of eating, which is her typical eating behavior.  We talked a lot about how I handle situations and the kinds of verbiage I use.  She said that the words I use are good and to keep it up.  An example of this would be talking about food with Ramya.  I will say things like, "I know sometimes it feels hard to eat, but eating is very important.  Your body needs healthy food to grow and learn.  I love you very much and it's my job to make sure you are eating enough food to grow."  We do a lot of talking through things and she gets reminded often that my job, as her mom, is to keep her safe.  I tell her I love her very much and that I take my job very seriously.

She brought puppets and Ramya responded very well to them.  The puppets talked and asked questions, and Ramya interacted with them.  Based on her observations with the puppets, she said Ramya does not yet have object permanence, which is something I thought to be the case.  If I leave the room, she immediately comes looking for me or starts calling me, as she likes to have visual and auditory contact at all times.  She gets pretty upset at me if I ask to have privacy to use the bathroom.  She will maintain verbal contact me during times like that, but isn't happy until she has visual contact again.  Because I this, I assumed she hasn't yet developed object permanence.  This is another thing we talk through a lot.  I tell her mommy is always here for her, even when she can't see me.  If David and I are going on a date, we tell her that we will only be gone a short time and that we will always come back.  We play games like "peek-a-boo" and hide-and-seek to help her understand that not seeing us doesn't mean that we have disappeared. 

She recommended trying is not letting meal times go on indefinably, but instead, if she hasn't finished a meal in x amount of time (say 45 minutes or an hour), then she has to drink an extra protein shake to make up for the calorie difference.  We have a session planned again for next week and I am anxious to get some feedback about things we can be doing to increase our attachment and help with Ramya's emotions and meal times.  The plan is to continue in-home sessions for a while, and then switch to less-frequent sessions in the office.


This morning Ramya had her feeding therapy evaluation.  The therapist asked a lot of questions about Ramya's history and why we were in for an evaluation.  She then watched Ramya eat  some different foods.  I had brought in about 10 different kinds of foods, with varying textures; some that she loves, and some that aren't her favorites.  She basically said what we already suspected.  Ramya doesn't have any problems with chewing or swallowing.  Her mouth muscles work well, she's able to clear her mouth correctly, she can move food around correctly, and everything looks good.  She doesn't appear to have any sensory aversions to food either.  She thinks her eating issues stem from desire for control and lack of desire to eat.  She said her mouth may get tired after some time eating, but that's because she's choosing to take 1-2 hours eating per meal, instead of about the 20-30 minutes it should take.  She said she sees this behavior in kids sometimes, and it can be really hard, because there is just no desire to eat and no motivation, so nothing you offer will motivate them, which is what I am seeing at home.  She's going to send home some things we can do at home to further strengthen her mouth muscles and also recommended getting a chewy tube for her to chew on and build up the muscles, but that there is really nothing she can do therapy-wise to help her.  She did recommend getting a swallow study, just to make sure things are ok structurally, so I called the pediatrician and asked him to send in a referral to Phoenix Children's Hospital.  She also recommended heading back to GI if Ramya doesn't gain weight this time around, but shared my same concerns with our last GI doctor and recommended seeing something different.

This afternoon Madi had her second session of cranial sacral therapy.  It lasts for about 30 minutes and she loves it!!  Our OT, Danette, goes to this person for massages and the lady had told her she was looking to take on a few kiddos to help.  She's been able to help kids avoid rodding surgeries and other things like that in the past.  She was excited to get to work with Madi and help her with her tight heel chord, hip out of place, and scoliosis.  Madi does feel more level and looser once we leave.  I'm excited to see her body change while we work with her.  She usually works with a child weekly for a year.  I also talked with her about Ramya today and she is going to start working with her as well.  It hadn't dawned on me that she might be able to help, as Ramya is actually overly-loose and not tight, but she thinks she may be able to help Ramya too.  I'm excited to have her working with both girls!!


That's all the updates I have for now.  Tomorrow is a down-day for us, and I can't wait!  Have a blessed weekend!