Tuesday, March 4, 2014

Perplexed

We saw Ella's Developmental Pediatrician (DP) a couple of weeks ago.  Based on that visit, along with my list of questions for the doctor, we have a laundry list of action items over the next several weeks.  I'll skip the various debacle of clarifying orders and scheduling only to tell you to have a clear understanding of the tests the doctor wants before leaving her presence and question everything as it is scheduled, even if it is a pain in the ass.  

My goal for all of this is to make sure that our current action plan (Weekly: PT2x, OT2x, CBRS/MT 1x, ST 1x; Monthly: VT1x) is the best plan for Ella's needs. This not only involves the frequency of her therapy visits but also the focus.

At the same time our OT who has been with us for 18 months told us she is moving to a new job. We are sad to see her go but open to new perspectives a new OT may bring.  I investigated clinical OT a bit but was disappointed in response time and scheduling availability.  I decided to go with the home therapist recommended by the company our previous OT was with but after a week had not been contacted by the new OT.  I got a call tonight from the 'clinic' owner stating the new OT decided home therapy was not right for her.  Now I am back to trying to find a new OT, the 'right' OT while trying to make sure the gap in her therapy is as small as possible.  This is our first week without OT, hopefully I'll have something new scheduled for next week.    

Ella had an EEG last week. While she wasn't crazy about it, she did better than I expected, with LOTS of singing and diversion techniques during the long wait with the prongs all over her head.  No results are available from that test yet.

Next Tuesday morning Ella is having a MRI.  She hasn't had one since she was 3 months old. Given her continued delays her DP and I want to compare against her baseline. 

Today, in addition to her ISFP review which occurs every 6 months, Ella had a Speech Evaluation, as ordered by the DP.  

Speech has been becoming a sore spot with me for the last month or two.  All of our other therapists have continued to ask what ST is working on... well, she is working on feeding.  It took me quite some time (back in NICU days) to figure out the correlation between Speech and feeding and why ST's were visiting us focused on feeding when she was just a few months old.  Now I do understand that there is a direct relationship between speech communications and feeding - how you chew, swallow, move your lips, jaw/teeth independently, move your tongue to shift the food in your mouth, etc.  

Several months after coming home from NICU, we went through 2 other ST's (quickly) before finding our current ST... I'll call her ST3.  ST3 comes once a week for 20 - 30 minutes and generally observes us (me and/or Nanny L) feeding Ella. She has helped us with ideas of new foods to introduce, where to place the spoon, how to introduce a straw, how to support her jaw.  She was key in providing tips for me to figure out how to stop needing our painful WIC appointments to get Ella's expensive specialized formula and get a Rx to have it delivered to the house instead - a HUGE win! She also advised me to reapply for respite care last summer which was actually approved just this afternoon... 

All of this said... she's never been 'hands on' with Ella like her other therapists.  Until recently Ella would get upset when she arrived at the house, even though Speech is by far her 'easiest' (not demanding) therapy, watching us feed her and offering tips.  Ella is quite the babbler, she makes clear choices and lets me know when a song she doesn't like needs to be changed on the iPod.  She understands a lot and is trying to communicate more and more.   Ella will be 2 in less than 5 weeks...  she's been doing some types of communication (mimicking back "I love you" for the better part of a year).   Her other therapists have helped guide me in all of these things in addition to using signs, but for Speech Therapy, all we focus on with ST3 is feeding...     

With the questions being asked about ST from our other therapists I began asking ST3 about other interactive ways of communicating.  I'm the parent… I don't know what to expect with ST, what the various approaches are, that's why we have therapists, to help guide us through the type of work we need to do with Ella to give her every advantage to conquer her delays and meet milestones!  

ST3 answers my questions by saying we can do play therapy to incorporate speech/communications but then drops it.  I had to be away from the house yesterday but asked Nanny L to have ST3 start the play therapy during her session that day.  Nanny L reported back that ST3 seemed off-put and indicated she needed to do a new type of evaluation before she could do that due to billing codes (never information offered when I asked about other ST approaches previously).  

So... based on our DP's orders, we had a new ST evaluation today, in clinic nearby.  Ella was evaluated at 3 -9 months communications with 9+months comprehension (of instructions).  Remember, Ella will be 2 in a month!  When I explained what type of ST Ella was receiving today... 20-30 minutes a week, feeding focused, the evaluator was trying to keep her jaw from hitting the floor (Nanny L later kept referencing the look on her face).  The evaluator, I'll call ST4, wants to see Ella for 45 minutes 2 times a week for play/interactive communications therapy.  

I really like ST3... but I know it's not about MY relationships.  It's not about my desire to avoid conflict/confrontation.  It's about what is best for Ella.  I need to let ST3 know that we are taking Ella's ST in another direction.  I also know that I am not committed to ST4... but we will give it a try and wait until we can get the videofloura (another test ordered by DP to be followed through by ST4) and then reevaluate from there.  

On a happy note, we are about to hit 6 months with Nanny L!  She has been a blessing for carrying through with Ella's therapy homework throughout the day, every day during the week.  She is such a big reason Ella is doing so well… 

At the same time, with her 2nd birthday coming soon, Ella still looms at under a year for all of her developmental milestones.  But every day she works very hard to make progress.  

Two weeks ago she started counting… she will grab your fingers that you put in front of her face when you count (typically with a song) 1-2-3-4-5…  This is HUGE!  I attribute this to her music therapy based on what we have been working on over the last months.

She will also fist bump as a form of celebration.  She will put her hand/fist out to you (upon prompting) so you can bump it and go "boom".  I've taught her this in the last week or so… she really gets so much… she is just trying to get better muscle control for among her arms/fist/grasp more accurately.  That comes with increased trunk strength.  

We just found out yesterday that Ella needs glasses.  That's another blog post… but I'm working on getting the proper measurements so we can get a good pair ordered for her.  That will probably help with her depth perception.

Pictures are still on my phone.  I'll have to update the post (or a new one) with pics later. 

11 comments:

  1. I can't believe she's nearly 2! How can that be? It sounds like you have a great team in place to help E master those milestones.

    It's hard balancing the therapy while trying to keep the kiddos' and your sanity. To this day, I still have a love/hate relationship with it, and my kids are 6! You sound like you're doing a great job with it all. :)

    All my best to you!

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  2. Your nanny sounds wonderful--what a great person to have on your team. And hooray for Ella's counting!

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  3. So glad to hear Nanny L has been working out. The ST is ridiculous, Ella definitely should have been getting actual communication-based therapy, if in addition to feeding therapy, for quite a while now! I hope ST4 ends up being exactly what she needs. I'm amazed at how on top of things you are! Keep up the good work!

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  4. I'm amazed by your ability to keep track of all these therapies and make all this work. You're doing a really good job and Ella is improving and growing everyday and making progress everyday. She's lucky to have a mom like you. I'm glad you're getting her all the attention she needs.

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  5. I'm amazed by your ability to keep track of all these therapies and make all this work. You're doing a really good job and Ella is improving and growing everyday and making progress everyday. She's lucky to have a mom like you. I'm glad you're getting her all the attention she needs.

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  6. I am impressed at all the appointments you and Nanny L juggle. I am so glad to see Ella's development growing. I hope the new therapies- especially the new ST will help even more.

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  7. Thank you for the update. So glad you have such a great nanny! And how far Ella has come...almost 2!! She's still the rock star!

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  8. Wow you guys have so much going on. Have you thought of doing sign Language. Sage loves the Baby signing time DVDs, perhaps when you get the glasses this might be a fun activity?

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  9. wow, you have so much on your plate but seem to have it all under control! what a bummer, to find out that ST3 has been neglecting her responsibilities so much! ugh! i hope ST4 is awesome and that Ella shows rapid progress with her.

    so glad you have a fabulous nanny! they are worth their weight in gold, especially to us single moms where it's practically like having a partner.

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  10. Can I just say I think you rock! How you do all this day in and day out and keep it all straight is just amazing! What a lucky lucky little girl Ella is to have you as her mommy!!!

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  11. It is so hard when your therapists leave. We have had a couple move on to other jobs/towns/lives and it is awful. First because you miss them and had developed a relationship and then the fear of the new one. But YAY to respite care!!!

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