Therapy Update

It's been a while since I've posted an update on Ruby's therapies. Here we go!

Speech
Ruby is stringing together words more and more often now. Instead of saying, "Tall", she might sometimes ask, "how tall Eli?". And one of her favorites right now is "Stop mommy!" She will sometimes follow it up with something like "my turn" or "No sing".

The emerging sentence structure is a good thing, no doubt, but it is a reminder of just how delayed her motor planning is in regards to speech. That girl barely gets cut a break in our house with her speech. (i.e. When she say, "milk", we make her give us a sentence or request like, "More milk, please." or "Can I have milk, please." Repeat this with every aspect of her day, all day long!) Even though she is improving, it is a sloooow process.

Ruby is repeating everything, which is huge! I remember vividly when she was two, turning over photo cards with her and saying the words with the hopes she would make any kind of approximation. Now she will not only read words (or identify photos) spontaneously, but when she hears her siblings say things, or especially if she hears a new word or phrase, she will repeat it intelligibly.

Sight words are something we've been working on for a full year, in preparation for this kindergarten year, which is so focused on sight words. Ruby currently does 35 of 50, give or take a few, on the first try, without any prompting from me. She is starting to read more and more, but that's almost always directed by me; she has yet to discover that she can find those sight words in her books without me next to her.

OT
Ruby is buttoning and unbuttoning big buttons on sweaters and jackets! Unfortunately, most of her clothing is smaller buttons, but you have to start somewhere. Her OT at school has a few sweaters for Ruby to use as practice and her manipulation is coming along. At home we are starting to see her become more skilled in zipping up her jacket too. She has yet to be able to line up the zipper on her own, but once there, she usually holds the bottom and zips up herself.

Regarding scissors, she is getting much better at cutting shapes with scissors. Turning her paper to get the corners or curves is a challenge, but with minimal help, she is making it all of the way around shapes like circles and rectangles.

PT
We are not formally doing PT at this time, and we don't have swim or dance classes. BUT we are always looking for physical therapy opportunities in our day, so it is still something I can measure growth in. Ruby now often alternates feet when walking on stairs - up is easier than down, but if she's holding my hand, she'll do it on the way down.

Ruby's jumping stamina is still increasing. Just a year ago we finished Aquatic Therapy because she was finally able to jump enough to clear the height of a pool noodle. Now she jumps on and off curbs, over small sticks, and in place just for the fun of it!

Another big thing Ruby is doing, something she's always done, is mimicking and imitating other's actions. If she sees someone doing something of interest, she intently watches and then repeats it. This is a HUGE part of why we push for inclusion at school for Ruby, and it is helping with PT things as well, like balancing, running, riding a bike, bouncing a ball, etc. One fun way it came into play last week was during Maddux's basketball game. The players and coaches circled up for prayer before the game, and Ruby grabbed an older friend's hand, and Daddy's hand, and led them to circle up as well.

On A Roll

Ruby is on some crazy streak(s) these days! Her speech is improving all of the time, allowing her to string together broken sentences spontaneously. (When playing by herself, I heard her say, "You hurt? Doctor. No, happy now. OK, bye-bye.", and when she's playing with me she will say combinations of, "Come, sit here, Mommy. No books, puzzles, please.") And her maturity in some situations is blowing me away. She is walking into the grocery store with me more often now (as opposed to riding in the cart so I can contain her), and she is doing many things independently.

Yesterday was the Kindergarten Sneak Peak, and Ruby rocked it. We talked it up a lot at home, reminding her that while it was her same school, this was for 'big kids'. When she and I arrived, she held my hand as I'd asked her to, and waited in line for our table assignment. Once we arrived at our table, Ruby immediately sat down, in control of herself, and started to color with the supplies laid out for her. The teacher in charge of that table told me that I was to go with the adults, leaving Ruby there to wait for the rest of her table before walking to the Kindergarten classroom. I was hesitant, but Ruby stayed seated, coloring and listening for instructions. She was very controlled and obedient!

Ruby is also starting to progress with her fine motor skills, which is huge because that is so vital for handwriting. She holds her crayon or pencil correctly almost every time without assistance now, and she is getting better on trying to stay in the lines with her scribbles. When she was born, we focused on physical therapy immediately, to get Ruby to a place where she could sit, and crawl, and walk, because she had to be able to physically keep up with peers. And then we moved to speech because talking is important for early socializing. Occupational therapy for fine motor skills, while important, always took a back seat to the other two. So while we've always worked to strengthen her fingers through signing, play-doh, etc, the percentage of time spent on OT is way less.

In the last month or so, I've really hit this harder at home: we practice on the upright chalkboard a lot (that makes it a little easier), and we trace highlighted letters and numbers often. Ruby is really good at tracing her name (or anything) if it's highlighted on her paper first. Last week I broke down my verbal cues for her writing a capital "R" in a different way and all of the sudden she was making "R" on the chalk board. Then her teacher sent this home yesterday.

So exciting that she wrote this all on her own!

Ruby Updates

We are still on an upswing of skills, especially in the speech area!

Speech
We just keep enjoying the flow of words coming out of Ruby. She adds new words weekly, and constantly becomes more and more intelligible to people outside of our house. Her latest words/phrases are:

• Whaaat?!? - This one is hilarious because, while it is not a new word for her, she will respond with this when someone says something she didn't expect. (As in, she uses it very appropriately! Last week I told her, "Ruby, we are going to pick up Maddux and Davis, and he's going to hang out at our house until soccer practice." She responded with "WHAAAT?" And the best, 'what' face ever!) I need to capture it on video, but she pulls it out at the best, most unexpected times and cracks us all up in the process.
• Counting to 10 - she will do it all of the time, on her own, in the backseat, when playing with toys...rarely does she make a mistake anymore.
• A - Apple - Ruby LOVES to find letters and then tell me what word they go with. Or tell me what letter a word starts with. A few weeks ago we were playing with legos and she put one skinny one perpendicular on top of another and said, "Look, Mommy. 'T' Ty-ler." And yesterday while we were discussing Eli's school opportunity to dress up as something relating to the first letter of his name, Maddux asked Ruby what she would dress up as. She promptly responded, "Ra-beet". Dang, she is a smart cookie!

Physical Therapy
Ruby is playing soccer on Sundays this spring to keep her gross motor skills in check. Her balance continues to improve, and she loves loves loves to run! We are also doing swim lessons once a week. Ruby loves the water and after a minimally rough start, she loves getting in the pool and working with "Miss Kelly". We will not be ready for swim team this year, but our hope is that she will join Eli and Maddux next summer.

Ruby is climbing everything she can when outside, especially on the playground. A few weeks ago I took her to a playground with a taller rock wall (straight up) to a flat surface. I stood below her, nervous how I would be able to catch her if/when she fell from so high, but she scaled that thing without so much as a hiccup. And last weekend I took her to a birthday party at a 'bouncy house' place. She worked so hard to get through the long, inflated obstacle courses. One almost took her out, requiring her to climb up a wall that was pretty high, on small little blow-up foot supports. But she never gave up and finally made it out. (And then asked to go back and repeat it a dozen more times before we left.)

Occupational Therapy
At home we practice tracing letters a lot. Ruby's grip on pencils and crayons is improving, and sometimes she can write a few of her name letters without the guidance of tracing. Her coloring is becoming a little more refined also; she still can't stay in the lines, but now she attempts to stay closer to the part of the picture she is coloring. Her cutting is improving as well; at school she consistently cuts out shapes, even turning the corners by herself sometimes.

Therapy Update

I have been bad, bad, bad about blogging since the beginning of school. What can I say...busy times!

Speech
This girl.

She is such a chatter box! Ruby's speech continues to grow, with her spontaneous speech improving daily. We are in a season where I get comments from friends like "I can't believe how much she's talking!" or "She's talking so much." And these are people who see her a few times a month at least! I recently started going back through a large stack of sight word flash cards with Ruby. While in the hospital, we would go through them daily. My focus then was not for her to read them as much as mimic me saying them. At best, there were 10-12 that she could say (repeating after me) with enough intelligibility for someone else to know what she was saying. When we picked those cards up last week, I realized that she repeats every one after me, and only a few are hard to recognize. (This stack is at least 50-cards deep.)

This made me realize how far we've come in the last two years. Not only is she speaking more, but she is doing so spontaneously (without being directly by me, or without repeating after me) and she is able to repeat anything I give her. When you are in the early stages of speech therapy, you are often measuring success by how many words your child has. For a long time that was a single digit number: the total words Ruby could say, repeated or spontaneous. If I think about it now, Ruby's word measure is infinite. If I pull out 100 cards and say the word first, she will repeat 100 of those words back to me.

This. Is. Amazing. And oh-so encouraging.

PT/Aquatic Therapy

Still Ruby's favorite hour of the week! We missed Aquatic Therapy for a month recently due to school breaks and scheduling issues, but when we returned, Ruby's therapist was excited and surprised to see how much stronger she had gotten in that month (instead of losing skills/muscle). This speaks loudly to the benefits of being in a school environment that allows for free-time on the playground for recess. My girl runs (and runs and runs) and climbs the whole time she is outside, and it is really paying off!  

Ruby can now jump with two feet, getting actual air under her feet. And she likes to jump all of the time. She has jumped in succession (two or more times in a row), but that skill is still emerging. She has jumped over obstacles (pool noodle height or smaller), but that still is still emerging too.

OT
Just this week I am starting to see some improvements in this area. Hallelujah!! Ruby just started to show interest/ability in coloring inside of the lines and is working on that skill. FINALLY this week she started tracing some lines/shapes/letters for me with success. She has been able to trace a line going straight down for a while, and I know she gives them a little more accuracy at school, but at home we have been struggling with this one. (One afternoon she even traced an "R" with crazy accuracy!) And yesterday when we were coloring in the afternoon, she kept readjusting her crayon to hold it correctly (unprompted). This is crazy cool.

And her scissor skills are improving too. Straight lines through the entire paper? Yes, please!

Therapy Update

Speech

Ruby is rocking and rolling. I keep saying it, but she adds so many new words and blends all of the time. This means articulation suffers as she tries to keep up with her expanding vocabulary, but that's why we do so many hours of speech each week (to correct). She still does speech 2x/week at school as part of her day, and then she does speech once or twice a week with private therapists that focus on different parts of her articulation and blending. Ruby is stringing together thoughts to make toddler-esque sentences now; it is so cool!

PT/Aquatic Therapy

This is Ruby's favorite type of therapy. She LOVES the pool, she LOVES Miss Beth, and that means she LOVES Aquatic Therapy! Ruby is jumping all of the place now, which was our main goal when we started. She can jump from standing still, she can jump forward, she can jump off a curb, she can jump twice in a row (sometimes). For an hour each week Ruby and Miss Beth motor around the pool, sometimes with ankle weights, kicking (on her stomach, on her back, seated, on a kick board), maneuvering pool stairs, jumping up and down in different depths and on dry land, doing sit ups, balancing on one leg, balancing in the water on a noodle or Miss Beth's knee....it's an exhausting hour!

OT

This is Ruby's biggest struggle right now. We still haven't acquired private Occupational Therapy. She receives it 2x/week at school, and when she stays for the full day at school, the afternoon focuses on handwriting, which hits this area. That being said, when I work with her at home, my assessment is that her skills are still very lacking. Her control of crayons, pencils, etc. is not great at all, and even tracing straight lines is difficult, so the only letters she can at all form on her own are "O" and "X". And those are not on a specific writing line, but wherever on the paper she lands. We are tackling that harder than ever at home right now. We do a lot of thera-putty, cutting, using utensils to pick up objects...that girl works hard!

End of Year IEP Meeting

We had another IEP this afternoon. I called this one. We are not 'due' for another IEP until December (the goals should last a year and we had one to challenge Ruby's initial denial into the program last December), but with the school year ending, prep for another begins. I wanted to establish if Ruby would be returning to special needs pre-K, and in what capactiy, along with goal updates.

Prior to these meetings, there is always a lot of prep for Lehr and I. Re-reading her current assessments and reports, reading up on kids similar to Ruby in different settings, discussing what is working and what isn't, talking with other families to see how they are navigating these waters, praying, praying, praying... But even with all of that prep, this time we did not go in with a clear plan.

 Honestly, I felt very conflicted about what I hoped the outcome would be. We have pushed for as much inclusion as possible all along which would mean us requesting Ruby attend the typical preschool (Mt. Zion) 3 days/week, with a facilitator a few hours each week in addition to attending the special needs pre-K (Sope Creek) the other two days. However, she has done so well at Sope Creek in just four months. She is potty trained and has been with rare accidents since the first month, she has made friends that she has conversations with every day, and she is talking talking talking so much! Those great things (which didn't happen in the typical preschool) are so great that they make it hard to consider taking even a little bit of it away. She may still thrive that way with only 2 days/week next year, but what if she doesn't? And what if her typical environment is one that causes frustration again?

So with these questions (and many more) on our minds, we went into the IEP with a very open mind, ready to have a conversation with her teachers and therapists. We all agreed that Ruby has made a lot of progress in a short time, in all areas. (The teachers are so proud of how well Ruby navigates the classroom and fulfills her responsibilities with no prompting.) And we all agreed that next year she should continue that progress at Sope Creek. She will be eligible for the afternoon (full day) program as well. That program allows for smaller numbers (more one-on-one), and more intensive work to prepare her for kindergarten (handwriting, number work, etc.). However, if she stays until 2PM each day, it will mean her 2-4 therapies outside of school will have to take place after the big kids get home, making our afternoons even crazier than they already are. So Ruby will attend full day, but only on days she doesn't have therapy. (These last few months, it's worked very well for me to pick her up before noon and get her therapies done before returning home to receive Maddux from the bus.)

So that's the plan for next year and we are happy with it. Ruby's summer birthday means she could start kindergarten after next year, or after an additional year (starting right after her 5th or 6th birthday). Should we wait until the second year, her final year of pre-K might be a typical/special needs pre-K mix.

Here's what made me smile at the meeting. The team, Ruby's team, a speech therapist, an occupational therapist and her main teacher, gave lots of feedback with lots of genuine smiles. They told little stories and gave examples of her in the classroom or therapy that obviously brought them joy. They love my girl. They see my girl. They are proud of my girl. They get how much she loves to learn. They see how much she wants to learn and work.

Therapy Updates

It's been a while...my blogging takes a hit when we get busy. And, as humans, we get busy.

Ruby is still rocking and rolling at the local public school special needs pre-K. She loves her school, but she has become a little too comfortable as certain less-than-desirable behaviors are often present. Mostly it is not sitting/staying put during story time and not maintaining her personal space. We are working on it. (Story of our life!)

Aquatic Therapy
Ruby loves it. We started this a few months ago, but had some hiccups with Medicaid and insurance. We are back now though, and Ruby couldn't be happier. For those that don't know (I didn't), Aquatic Therapy can be used for PT, OT, speech...you name it. For Ruby, it's mostly PT, but also a little OT. She and her therapist move around the pool, using platforms and ankle weights and a variety of squeeze toys to engage core muscles and use the water for resistance and also balance support. After just one session I noticed some improvement in Ruby stepping over structures/thresholds. And just this week she jumped with two feet simultaneously (while waist-high in the water, on the platform) for the first time EVER. I have spent countless hours working with her on this skill on trampolines and curbs and all raised structures...who knew water was the answer!

Speech
Rock-n-roll. Ruby's speech is not clear, but her vocabulary is growing daily. And she strings words together so much now! Her latest and my favorites are:

• "Got it" (Ruby says this when she is working on something and you try to help her..."I got it".)
• "faster" (Ruby says this when you push or pull her down the hill in a wheeled mode of transportation.)
• "Caffee" (This is what she calls my mom. The big kids call her 'Grandma Cathie', but Ruby obviously feels that is a big formal because while she can say a version of 'grandma', she intentionally drops it for my mom.)
• "Baby. Want read? Ok."(This is an example of the conversations she has with her baby dolls and stuffed animals around the house while I'm making dinner.)

OT
At school Ruby works with an Occupational Therapist twice a week on specific tasks related to fine motor skills. She is getting so much better at controlling a writing instrument (usually a big crayon) to loosely trace lines and make round shapes. She is also stacking blocks and stringing beads with much more control and skill.

IEP

We had Ruby's IEP redetermination today. It was a long meeting, first reviewing the findings of all of the tests and evaluations, then determining eligibility, finally setting IEP goals for what Ruby qualified for.

Lehr and I attended, along with Ruby's speech therapist through the school, the Occupational Therapist that evaluated her, the school psychologist that evaluated and observed her, the Special Needs Pre-K teacher, and the community based facilitator. Ruby was along for the ride, eating a snack and playing in the Pre-K room the whole time. (I was surprised with how well she sat for most of the meeting!)

There were no surprises in the findings for us; they agreed that Ruby qualified for Special Needs Pre-K and speech and OT. When it came time to set the goals, things turned slightly. Not from what we expected as much as what we agreed to. For most of the time leading up to the meeting, we have been so solid on maintaining what we've set up for Ruby in the way of inclusion in the typical (private) preschool. That is and always has been our goal. But I felt a very clear vision was cast in that room that demanded a different path to that goal. The team wanted several goals for Ruby, which lined up very well with the ones I had prepared in the past few months. In order to reach those goals, they asked for Ruby to receive speech one hour/week and OT 30 minutes/week. The OT stated that Ruby's scores did not qualify her for that much speech, but she wanted her to receive that support to boost her abilities in the classroom without support. When it came to determining how Ruby's Special Needs Pre-K schedule would look, they suggested 5 days/week.

Yup. Big change.

That is not at all what I ever said I would do. It's not what I planned on. But this team set goals that I think will help Ruby get to full inclusion. Four of the members of this team have met with me and talked to me about my vision for Ruby. Four of the members of this team have observed and/or worked with Ruby already and know her strengths and weaknesses. One of the members knows the private school she's attending, and has worked with her teachers specifically. They are not basing their suggested plan on results from a one-day evaluation.

We want Ruby to be in the 3-year old class at Mt. Zion next year. In order for that to happen, she needs to be potty trained. It is embarrassing for me to admit that I have not been able to succeed in that venture, despite working since this summer. I am aware that Ruby's current schedule of Mt. Zion and speech and gymnastics and more speech does not allow for much consistency in the way of training, so this 5 days/week in an environment that supports that goal will help. Also, for Ruby to be successful in a typical preschool with other verbal kids, she needs to have more practice with attending to tasks and sit-down time for longer periods of time. She needs more practice with using her words to get her needs met. She needs more practice with fine motor skills regarding writing and scissors in a classroom setting (not just at home). The realization I came to in that meeting is that we can either address those goals for the rest of this year, or struggle through this same process next year.

I know there are no guarantees. And I know that some (maybe all) of these things are possible struggles for Ruby next year and years to come. But we've been working on them with our current strategy since June with progress, but not success. I think we owe it to Ruby to try a new strategy for this semester to see if it speeds the progress. It is not our intention to hold her back in anyway with this new plan; we see it as equipping her with an extra boost to return to Mt. Zion next year, better than ever.

The Build-Up

I have not been blogging as much the last few months. Life is busy, as it is for everyone. In addition to our regular 'busy', my downtime has been a bit consumed in praying, researching, planning, preparing, reading...all things associated with Ruby and what her schooling and therapy should look like right now. Specifically, when it comes to public services.

So we've been weighing the pros and cons of her speech therapy, of her extracurricular (gymnastics, soccer, etc.), of her private 'typical' preschool class, of her other speech therapist (who has also been acting as a facilitator on occasion in her typical class), so on and so on. When we started the process of Ruby's public school experience, she was not found to qualify for anything more than one hour of group speech therapy each week. We didn't agree with that (as we knew the reasons why Ruby scored so high were not a realistic picture of what her school experience would be), but recognized that the team that would ultimately work with Ruby, the team that was making these decisions, had never met Ruby - they had only seen the evaluation results from another team. So we agreed to give them some time (six weeks) once Ruby started services (speech) in the fall to collect the data they needed and then we would call for another IEP.

This process has taken a long time. That's a painfully long time for those of us that are impatient, especially when it feels like we've been waiting since May. In reality, we called for the IEP redetermination at the beginning of October, over two months ago. We met a few weeks later to discuss the path to get there, had a few new evaluations of Ruby (psychological and OT, and a new speech, based on her current level), had 2 or 3 observations taken of her in her private Preschool class, filled out more paperwork and online questionnaires about Ruby's levels, abilities, etc., had her teachers fill out more paperwork. All of that will culminate in a meeting for IEP qualification and redetermination this week.

It feels like we've been studying for finals all semester, but without a real clear picture of what subjects will be covered. Even though we received some of the reports from the evaluations, the interpretation of them from the team may differ significantly from ours. It did last May; Lehr and I did not expect to be denied services at that time, even based on her star-student evaluation. I don't feel this is an act of deception by the team, it's just the reality that Lehr and I are inexperienced in these types of meetings, so we don't know what to expect. Friends that have gone before us have mixed results, causing some cause for cynicism, but we are hopeful.

At this time, we are praying for a clear answer of what will best benefit Ruby. We think that is her private Pre-K with a facilitator 3 hours/week, in addition to speech once/week and OT once/week. Whether or not she attends special needs Pre-K also is something we go back and forth on; we are open to hearing the team's thoughts on how that works into our plan for Ruby's full inclusion for Kindergarten in a few years.

Ruby Updates

Speech Therapy
Ruby is doing better in speech therapy. She is performing the 'tongue to the top of her mouth' task we ask her to more consistently. (Not to be confused with the 'tongue behind the teeth' task we are really after.) She still isn't able to keep it up there when she makes the 't' sound though, and we've been banging our heads against the wall working on that for over a month. Thankfully, her myofunctional specialist gave us a new assignment this week: L. So instead of the 't' sound, we are working on the 'l' sound. Much better because Ruby is able to make that sound with her tongue securely in her mouth. We are hoping to hit the 'l' hard and eventually transition it to the 't' through words that contain both (lot, light, etc.)

Ruby really does know her colors, but if you hit her when she's not in the mood, she will not demonstrate that skill for you. It has happened on more than one occasion when she and I have been in an evaluation, or with a teacher or therapist and they have asked her to point to or pick up the item of a certain color, and Ruby will not correctly comply. However, I bought a new therapy tool game for the two of us to work on this week and on her first try, she nailed it. Not just with two basic colors, but with six colors: red, blue, orange, purple, yellow, and green. And then she totally matched colors, and even shades of color within the game. Smart cookie.

I realized the other day just how many letters Ruby does recognize. While sitting on the potty for no real reason hanging out, I pulled out a handful of random foam letters and tested her. She's on it.


Occupational Therapy
I picked up small tongs this week for Ruby to work with in an effort to improve her fine motor skills. I would still like to see her use her pincer more often than not (she still 'rakes' to pick up cheerios or nuts on her high chair tray when she gets tired). I picked up a pack of cotton puffs for her to practice picking up; she's a pro. I need to find something harder for her to pick up, I guess.

Physical Therapy
We don't ask Ruby's PT to come by very often anymore. Ruby still has some delays in that area, but much less than any other, so it's not our first priority right now. Ruby is close to running (coming down the driveway or our street, gravity helps her and she gets some serious 'run stride' going). She isn't jumping yet, but we are working on a few strategies to try and encourage that.

She loves the stairs. Ruby will NOT let anyone help her with stairs unless she is certain she can't do it herself. This adds much time to my day, but it is worth it to see her trying to be so independent. Her other favorite thing to do is ride one of her bikes down the driveway. As soon as the garage door opens each day, Ruby hustles over to a bike and pulls it outside. She rolls/drags it to whatever height on the driveway she desires and then sits down. Most of the time she needs to use her legs to propel herself forward. This helps her strengthen her hamstrings, so I love it.

You know what else I love? How 'typical' she looks when she's motoring around so fearlessly on those bikes.

Speech! Speech!

This girl is starting to take off in the speech department. For reals. She comments on everything, and people other than me are starting to know what she's actually saying! A friend watched her while I went to a doctor's appointment this week and she was blown away by how much Ruby was talking.

The biggest example of this is her reading a book, or singing along with songs on the radio, or talking about her body parts. I am trying to get it on video, but until then, it goes like this. I say a body part (elbow, foot, chin, etc.) and she points to it and repeats the body part. At this time, she can identify about fifteen of them and at least half have a word approximation that is pretty darn close. She also continues to surprise me with random words that come out so clear. Today was "Thank you" and the other day was "umbrella".

This is not speech, but it's OT....Ruby loves to feed herself and often will fuss at me if I try to feed her instead of handing over the utensil. She's also starting to be 'silly' during all tasks, so while she knows what to do, she will play around some times (this happened a few times during the video.) Ruby is still working on keeping her tongue in and lips together while chewing; process improvement :)

Friday Updates

Not sure if I mentioned it, but yesterday was crazy good. Great nurse, productive therapy day for Ruby and I, lots of reading, LOTS of walking (PT), and all around great productivity (considering we are sequestered to a small portion of the hospital, mostly in our room). Our ability to get through speech and whatever OT exercises I throw at her definitely depends on Ruby's focus. (Good thing for us, Ruby is usually excited to 'work', whether it's speech or PT.) And yesterday, her focus was great! She napped hard, but was 100% when she was awake.

This morning's rounds were uneventful, as they should be this stay. I asked the Nurse Practitioner we love about how this whole thing ends after she finishes the next round, and it was confirmed that when Ruby recovers from Round 6, she can get her port taken out rather quickly. Music to my ears! I am so eager to get this girl in swim lessons!

The NP also asked me about therapy while admitted, and kinda pushed for us to utilize some while we are here. Apparently OT and Speech will come to see her this visit. (Speech already came this afternoon to check in with her and try to set a plan.) I'm always a fan of getting some additional eyes on what we are doing and what she is doing, but this also brings me some frustration. I definitely intentionally asked during round one, and maybe round two, about how to get services for her while she was here (since she was here for 50 days between those rounds), and I got nowhere. On the other hand, the time in the hospital has allowed me to sharpen my therapeutic skills, at least with speech. And when we are here, she and I usually knock out two 'sessions' each day.

Sidenote: I can't get video of Ruby's antics in the hallway because she tries to push her chemo pole so fast that I need to keep both hands connected to steady and slow it. Here is what she looks like though (no joke):

  

She seriously puts her feet on the ground, grabs the blue bars and says, "Dooooooh!" (Go) as she starts to walk so fast she's all but running. 

The Cumulative Effect

Ruby has handled everything thrown at her so far with amazing energy and health. I know if it were me going through chemo and all of the transfusions, I'd have taken several 'sick days' from life by now, but our girl keeps on trucking. Sometime in the last round though, a few side effects of leukemia and the chemo have started to show up. This tends to happen as the patient's body experiences the cumulative effect of the chemotherapy over months.

• Fatigue: This one is a no brainer. I'm fatigued and I'm not even getting all of the meds or waging a war inside of my body between sickness and chemo. Ruby is still very full of energy, but maybe half of her days find her with a dip in energy around 11:30. It may or may not pick up after she eats a snack or lunch. 
• Vomiting: Ruby has yet to get sick on the chemo, and for that I'm so grateful. (Besides the draining effect it could have on her energy and nutrition, I worry that severe vomiting would deter her from wanting to eat or drink.) In the last month though, she has vomited small amounts several times. Usually it's within 30 minutes of eating, and it's never been a big amount or a big deal. Ruby doesn't seem bothered by it; the only way I'm aware of it is if I see it on her shirt or the ground next to her. It's almost like a burp...like a baby spitting up. At first I thought it was only a matter of her eating too much for what her stomach could currently handle. We started giving her smaller portions and that seems to help. She still has bouts of it occasionally, but it's not enough to affect her weight nor does it seem to bother her. For now, we are not medicating with Zofran.
• Chemo-Induced Peripheral Neuropathy: Say that three times fast. Heck, I can't even say it once! Ruby seems to be having some balance issues. Where she was so steady on her feet prior to the chemo, recently she's been stumbling more, losing her balance and falling into walls or down to a sit position. Some of this could be fatigue; her muscles are too tired to do what she's asking of them. It could also be CIPN, which can manifest in pain or loss of feeling in hands and feet, and also muscle weakness and decreased reflexes. 

That last one is the one that gets me right now. Ruby is already battling against decreased muscle tone and the developmental delays that come along with that because of Down syndrome. We have spent countless hours since she was born working on PT (for gross motor things like walking and picking up objects) and OT (for fine motor things like pointing and using utensils). Now I'm seeing some of her skills that she's worked so hard for regress a little. It just makes me sad because, even with her two years of hard work allowing her to achieve milestones quicker than expected, her development is still behind her typical peers, and this new challenge just adds to that.

When we registered Ruby for preschool it was intentionally chosen so she could be around other two-year olds and rise to their level both with speech and physical movements. Between her missing so much school and the CIPN, it's hard to see any progress coming from our efforts; even when she does go to school, it tires her out so quickly. It makes me worry that she is falling further behind those in her class with each passing round.

Not a complete downer post though.....our girl is a hard-worker. For reals. So this just means she will have to keep that up. When Ruby is not hooked up to chemo, she and I are outside at the hospital, playing on playground equipment and climbing up stairs. When Ruby is at home, she is outside with Lehr and the kids, pushing herself on her bike and chasing the soccer ball. It's just standard operating procedure for us. As long as she can, we will keep that up

Occupational Therapy

This is the only 'main' therapy that Ruby does not receive. While her PT incorporates some fine motor training into her therapy, and I read up on activities that will help her with OT, she's never had a professional in that area work with her. It was my thought initially to get her mobile as quickly as possible by hitting PT hard, and then once she could handle more, pull in speech to get her talking. Not that OT is not important, because it is, but I felt that walking and talking would help her more socially than holding a fork, or buttoning her clothes.

Because of that, there are many things I wish Ruby could do better when it comes to fine motor skills. She does not hold a crayon with proper technique, she cannot lace beads onto a string without assistance, she still struggles to pick up small objects due to inconsistently using her pincer. One area Ruby is starting to show improvement in, however, is her self-feeding with a utensil. Ruby's been using a fork for select foods (ones that are easy to 'stick' like Gardenburgers or some casseroles) with success for almost a year. We've been letting her use a spoon for cereal or oatmeal for about a year, and for the last 4-6 months, she's done pretty well to get that spoon loaded and then into her mouth, unassisted. However, she still would flip the spoon once it was inside of her mouth. During this last stay at home, she's corrected that and has had much better 'correct' form with the spoon.

As usually happens, that means I let her eat unassisted a bit more, which means she gets more curious without me hovering over her, so she's also used her fingers in the bottom of the yogurt or applesauce bowl if I'm not paying enough attention. So less mess from the spoon eating, but more (mommy's fault) finger eating.

Therapy Update

We don't receive services while in the hospital, but I do try to get as much speech and OT as I can into our days. Ruby is doing well with letter sounds and even some letter recognition. She will say 'Aaa-y' and 'beeeee' and 'deeee' when she sees those letters, and 'mmm', 'nnnn' and 'ooooh' when she sees those letters. I love it. Ruby does not give me most of the words that she can say spontaneously, but she does have so many words now. Her newer words are:

• app-hhl (apple)
• bussss (bus)
• aaayt (eat)
• hehp (help)
• uhhg (hug)
• isss (kiss)
• nooo (no)
• duhhhck (duck)
• yahhhck (yak)
• pea-sss (please)

Ruby is still working on threading beads on yarn...we work on it a lot and she is by no means there yet, but she's come a long way. She is getting better at feeding herself with a spoon and fork too. That is something we've worked on for probably a year, but every day I see improvements in her accuracy and cleanliness. She is also coming along with signing 'I love you'. That might seem like a speech thing, but it's a fine motor skill to get your fingers to operate that way, and she is darn close to it after trying so hard for two months now.

Therapy Update

Speech:
Ruby is going to yet another speech therapist (that makes three). This one focuses on the actual sound production of each letter/sound rather than words. She will also be helping me with some eating/feeding stuff. Ruby eats fine to those of us that don't know what to look for, but if you dig a little deeper, her chewing motions and her tongue thrust could use some improvement. Instead of chewing with her back teeth to break down her food, Ruby tends to squish and mash with her tongue and general mouth movement.

Tongue protrusion has always been one of my biggest stress-factors with Ruby. Recently we've been working with a few newer oral-motor tools to try and help with that. One is plastic flutes/whistles that helps strengthen her overall mouth. The one Ruby has really taken to is a red one; she can often be found around the house blowing the heck out of that thing. The other is a small plastic 'chip' that she puts in her mouth and it helps remind her to keep her lips together. I can honestly say it is helping!

Last week we had the evaluation with this new speech therapist which lasted two and a half hours. Ruby did great, considering, especially since she was strapped into a chair the entire time. One bonus for her was when the therapist pulled out a bright blue Dum Dum lollipop and did some things. When she was done, she let Ruby finish it....big time.

In general news, Ruby is still as vocal as always, but no words that others may recognize yet. Many word approximations and signs still incorporated in her communication. One area she is improving noticeably is when she needs something, she will tell me "Mama (verbal). Help (sign with random talking)." We've heard a "yesh" (yes), "goddit" (got it) and "hep" (help) in the last few weeks.

Physical Therapy:
Ruby is walking and fast walking everywhere, including up the driveway. She still keeps her hands in an 'on-guard' position, but will put them down when I remind her. She is also carrying things while walking....mostly small toys, books, soccer balls, and anything that doesn't weigh more than her.

Some of the exercises we are working on include hanging from a bar (to help her upper body development since she's not crawling anymore) and deep (DEEP) squats. That is something Ruby does pretty well actually; she will squat down and play often, standing back up without any help most of the time.

Occupational Therapy:
We don't meet with our PT specifically for this, but it gets worked in during some PT sessions. Also, there is an OT at Gigi's that chimes in with great ideas for Ruby. Recently we've been working on sorting objects by color (she does pretty well until she's bored and then she loses focus and interest). Our next step will be to sort them by shape or 'type' (animals, foods, etc.) Ruby is also stringing big beads or pasta onto shoelaces....another area I was unaware she could do at all until we showed her and she picked it up the first time.

Behavior/General:
We are almost two, so I've been working with Time Out. Yeah....we will be working on that for a while. She doesn't get it, or thinks it's a game, or both. And the word "no" is sometimes met with her hurrying to do whatever she is on her way to do. (To be fair, sometimes it's met with intentional walking away also.)

Asking for help on her own, without me prompting her, is a huge thing. She has done that several times in the last few weeks and I LOVE it.

Ruby is climbing into and out of any chair she can. Sometimes it's her small lounger that the kids got her for Christmas, sometimes it's her car seat, sometimes it's the couch. Whatever it is though, she giggles the whole time.
Ruby shows us continually that she 'gets' things. She listens and picks up on stuff that I'm not even trying to teach her. When I took her for a haircut last week, the beautician gave her and Maddux each a paper cup of animal crackers. When Maddux was done, I threw her cup in the trash. About a minute later, Ruby finished her crackers and crossed the room to the trash can where she threw hers away. We haven't worked on the concept of trash or throwing things away, but that girl doesn't miss a thing.

Therapy Update

I recently realize something. Even when Ruby isn't racing towards her next milestone, she is still moving in it's direction. Sometimes slowly and silently, so much so that I don't even recognize it at first. That girl....she's amazing.

PT
What can I say....she's all over the place! Ruby is walking constantly, pushing herself to go further and faster everyday. She still fatigues and will 'drop' to a seated position when her legs run out of steam, but she is never down for long. Her walk is so fast sometimes that I would almost call it a run. Ruby is also riding/pushing around her new bike. She can totally get on and off of it by herself too, which takes more balance than I thought she had.

OT
Ruby is currently able to sort colors, sometimes even with differing objects. She plays this game with me where I think she understands that the red ball and the red button are both red, but she puts one of them in the yellow bucket just to test me. It's all in the way she gives me this sneaky look as she does it, as if to say, "Your move, Mommy." We are also working on threading big wood beads and pasta onto a cord. She does pretty well with that most of the time.

Speech
Random signs keep popping up because Ruby is very interested in mimicking these days. She will sign "cow" and "horse" and "cracker" and a few others, even though they don't have a lot of every day relevance for her. She is making more word approximations when we read books together too....that is very cool. Finally, Ruby is starting to follow 2-step directions. (Ex. Pick up the egg and bring it to me.) To be fair, most of these directions are very predictable and related, so they may not be a fair test. That's to say that when I ask her to pick something up and bring it to me or pick up the cup and put it on the table, the secondary action is often an assumed action after the first. But I'm still giving Ruby credit.

Therapy Update

That girl.
She just keeps on goin'.

Ruby is walking so much more. She's developed a little bit of an 'old man shuffle': tiny steps that allow her to get farther without falling. She used to take big, more typical steps, but couldn't seem to get more than 6-ish before losing her balance. Now she can (and routinely does) make it all of the way from one room to the next, sometimes stopping mid-walk to regain her balance, but never sitting down. She is learning to pick things up and carry them as she walks, and (on her own) she's learning to change direction as she walks.

Ruby will stand on uneven surfaces all of the time. Usually it's her trampoline, but she did it on Maddux's bed the other night too. (yay) And she doesn't try to slide her way down the stairs, head-first, anymore. She has been turning herself around to 'crawl' down backwards for a few weeks.

Ruby's new speech therapist is a perfect match. First off, from the moment Ruby met Paula, she's liked her. I know this because she's not cried at all during therapy and she's mesmerized by anything Paula is doing. She is much better than I am at getting Ruby to focus on the activities, which amazes both of us. Ruby is getting much better with her "b" sound, she's added a few more signs (night-night, music, open), and she is shaking her head 'yes' at all appropriate times. When I give Ruby food now, at least half of the time she will say something two-syllable. I believe that is her saying 'thank you'. It doesn't sound like it, but it's totally intentional (and when I ask her to say thank you, she does the same, or signs it.) Ruby has found her first animal sound, after months of working on them: 'moooo'. BUT, as great as she is with her "mm" sound, her 'mooo' comes out "bmbmoooo". (Paula says it's due to the two separate sounds she is trying to make.) And when I sing to her in the car, I can see her in the rear-view mirror, doing the hand motions at the appropriate times.

All by herself, Ruby stuck a piece of food with her fork today for the first time! I cut up a cheese stick and gave her a fork, as I often do. We went through several pieces where I would help her stick it and then she'd bring it to her mouth. While she was chewing one piece, I turned to grab something and when I turned back, she had her fork stuck in a piece of cheese on the tray and was starting to bring it to her mouth. Yay!!! I worked her really hard on this skill yesterday for lunch; obviously it payed off!

Therapy Update

I don't even know where to begin. This girl and her progress...amazing!

Physical Therapy:
I would call Ruby an official walker now. She takes more than 10 steps at a time and chooses to walk way more than crawl as a means for transportation. Last week Ruby was still walking, but it was no more than 6-8 steps and she still 'crashed' a lot. Not a full on walk till she ran out of steam, but there was no regrouping if/when she lost her balance.

This week has found her taking slightly smaller steps and often slowing to a stop to regain her composure before continuing to her destination. Sometimes she still only gets 4-6 steps, but other times she makes it across the room. We've been working with holding objects while she walks, to improve her core strength and overall stability. Black bean cans, tennis balls, small buckets and weighted 'soft' balls are all in her tool belt.

Occupational Therapy:
While we don't have any official sessions of this, Ruby's therapist is incorporating it more and more, and I've been working on some things with her as well. The last two weeks we've been working on stacking objects (boxes and cans), putting objects on top of the couch, and clothes pins. That last one has been the most fun for Ruby: she loves to pull the clothes pins off of her shoes or shirt.

I've been working mostly on feeding skills, trying to get her to self-load the fork. One of those control strategies is using toothpicks to eat from. I load up a few with cheese or apple or meat and she picks them up and eats from the end. Obviously she has to bring it to her mouth correctly (which she already does very well with a fork), but she also has to use her fingers intentionally to pick up the end of the toothpick. I let her color a few times each week too, to work on that grip strength.

Speech Therapy:
Ruby has a new speech therapist. While our first one (through Babies Can't Wait) focused mostly on oral motor strengthening for eating and speech prep, this new one is more speech/sounds oriented. So far, so good. She is amazing at getting Ruby to S.L.O.W. down and listen. I try to replicate on my own, but I am not as proficient. Ruby has added more signs: music, bird (just like duck), night-night. And she does some hand motions with our songs that we sing: Itsy Bitsy Spider, Pat-a-Cake, and Row Your Boat. She is also getting better about giving me the 'B' sound. She now nods 'yes' (she brings her head back but doesn't get the nod part as well yet), and when I ask her what the cow says (or if she sees one in a book), she says "bmbmbooooo". As happy as I am about that one (her first animal sound), I'm confused because "mmm" has been her best (and often only) consonant for so long. You'd think she'd make the 'moo' sound more pronounced.

Ruby-Cube

What an eventful time it is with this girl right now! This is not even a therapy update because these things are not all therapy-driven, BUT our lives are so intertwined with therapy, that honestly every minute of her day is shaped in some (therapy-derived) day. Soooo....update on Ruby or therapy or both, I guess.

Newest tricks for my girl include:

• Dancing. Not really dancing, but she's not responded to music much until this last month. Now she will stop what she's doing and swing her arm (usually right) straight out in front of her when she hears music playing. Love, love, love.
• Standing Unassisted. Really. She has been letting go of whatever support she's used in the standing position for quite some time, but lately she will 'climb' up one of us when we're down on the ground and then right herself to a standing position. She pushed herself to standing from Eli's knee the other day and he was SOO excited.
• Walking. Wait...what? OK, not really. BUT she took her first two (totally unassisted, totally independent) steps this week. At least three separate times in the same day too! 
• Eating Unassisted. Sorta. Ruby's been rocking the feed-herself-with-a-loaded-fork for months now, but I've been experimenting with spoons lately too. While it is a messy endeavor, it's starting to pay off. AND she has her bowl-to-mouth accuracy down because of all of the fork practice.
• Signs. Oh, how many she has. In the last few weeks Ruby has picked up several and uses them often. She still does "all done", but it's more intentional and recognizable now. She will sign "fish" when we are reading a book with a fish photo in it, but only when prompted. She will sign "please" all day long and very emphatically. Usually it's a flipping over hand across her chest, but if she can reach her belly (as in, when she's not in her high chair), she will rub her belly like crazy. And "eat". She will bring her hand to her mouth to tell you she wants to eat. Again, and again.
• Imitation. Ruby is showing us that she can be a very quick learner in every portion of her day. While we always put lotion on her after her bath, I just realized a few weeks ago that I never show her how she can do it herself. It only took one time and now she rubs her arms and chest as soon as she sees the lotion and/or bath soap. Love that little sponge!!