Bye-Bye Honey

This post is about a month over due!

Some of you may recall that we started feeding therapy with Robbie when he turned 13 months.  At that point he was getting all of his liquids from a dropper. He wasn't strong enough to use a bottle or sippee. We then found out he was aspirating on all liquids and the thickened liquids wouldn't even come out of a bottle or sippee.  Our wonderful ST, Blaire, introduced us to Honey Bear (a honey bear with an oxygen tube coming out of it). With it we were able to squeeze the thickened liquid safely and easily into his mouth. 

It took a long time to build the strength in his face, lips, tongue, etc so that he was able to suck the liquid out on his own.  Even more time to be able to suck ALL the liquid out without getting too fatigued.  I am happy to say he has made it!!!  In November we were able to say goodbye to Honey Bear! 

Robbie can now drink all his milk, water and juice from a regular straw sippee cup  :D  Not only that but he is beginning to be much more independent in all of his eating. He eats 2 to 4 veggie straws four or five days a week, eats his oatmeal on his own, eats much of his lunch on his own, and requests fruit puree pouches for snacks!  So very exciting!!!

We still have a long way to go and appreciate any prayers you have for him. Thanks for joining in our happiness!

O-fish-ally 3!

Robbie is three! He had a marvelous birthday. This year it fell on a Saturday so we were able to have the party on his birthday.  He had an absolute blast :D  Since he is obsessed with fish we went with a goldfish theme and he loved it of course.  It was a family party at the park and it was a beautiful day.

 The cake, cupcakes and marshmallow pops.

Robbie loved all of his gifts and had fun poking at his cupcake.  He wore himself out having fun with all his "cousins." He hardly stopped going the whole three hours! 

The most exciting thing about is captured in these two pictures!  For the first time ever Robbie played on the play ground equipment without prompting and in a proper manner!  He was able to maneuver the toddler playground all on his own!  Normally, when at a playground, Robbie will stay to himself and simply play in the mulch, sand, or dirt. It's very hard to get him to interact. This time from the moment the first kid arrived Robbie was interactive! Now granted a large part of his interacting was throwing mulch at others and this upset quite a few people, but Chet and I were thrilled because he was playing instead of staying to himself.  Given that his developmental age is 19 months I think it is what we can expect while he is learning to play with others (though we are working on teaching him more appropriate ways).  So he had a complete blast running around and throwing mulch and climbing and laughing and playing.  It was wonderful! 

One of Robbie's favorite gifts!

Evaluations

In the last week we finally received the evaluation reports we have been waiting on.  One was a Diagnostic Report from a team at UCF and the other an Occupational Evaluation and Plan from an OT at Achieve Pediatric Therapy.  Know that the findings are not necessarily exact and correct. The conclusions are drawn from a 3 hour window for UCF and a 45 minute window for the OT, and our observations and reports from home.  

UCF Evaluation

The evaluations done at UCF were an Oral Motor Examination and a Transdisciplinary Play Based Assessment. We sought this one out to see if Robbie had apraxia and what recommendations they would have to help him improve.  I will take several excerpts directly from the reports and fill in and summarize other areas.

According to the findings of the Oral Motor Exam, Robbie does not have oral apraxia.

“The TPBA-2 is a natural and functional assessment instrument that allows for cross-disciplinary analysis of development milestones”.  They also did a sub test of the TPBA-2 that covered Communication Development, Cognitive Development, Sensorimotor Development, and Emotional and Social Development.  According to this assessment “Robbie shows significant delays in his developmental milestones in 23 of 25 categories. . . Robbie averaged a 43% delay across all categories which is equivalent to an overall developmental age of 19 months of age”.

Clinical Impressions

“Robbie is an easy going and playful child. . . Robbie produced spontaneous speech on occasion but primarily relied on gestural communication”.  There is a bunch of other stuff in their findings and our reports that lead to, “These mixed findings do not confidently suggest apraxia of speech, however further signs should be monitored. Pre-linguistic apraxia of speech may be observed with an increase of articulatory load on his motor programming skills.”  So currently they rule out apraxia but he is on the young side for it to be diagnosed and may present itself later.

“Robbie’s attention abilities (He scored at a 4 year old level here) were a relative strength for him. The ability to attend to tasks and sustain attention increases the likelihood of a positive response to therapy. Additionally, the involvement and supportiveness of his parents contribute to a good prognosis.”

Recommendations

“Additional evaluation from a developmental pediatrician is warranted. Given Robbie’s delays, it is also recommended that there be continued monitoring for apraxia of speech. Robbie should continue with sensory motor based speech therapy.”

Occupational Therapy Evaluation

This was a much shorter eval since she was only looking at OT. Here is the gist of it.

Perceptual/Fine Motor Subtest – Robbie demonstrates solid skills through the 12-15 month level with passing and emerging skills through the 16-19 month level.

Self-Care Subtest

            Feeding Skills- Robbie has significantly delayed feeding skills (about 6 month with some higher skills)

            Toileting Skills- Robbie has passing and emerging skills through the 16 – 23 month level.

            Dressing/Hygiene Skills- Robbie does not have solid skills through the 12-15 month level.

Sensory Status: Robbie’s ability to perform age appropriate functional skills appears significantly impacted by decreased sensory processing skills.

OT Eval Summary

“After standardized testing, non-standardized testing, and parent interview it is concluded that Robbie has deficits in the following areas: fine motor/dexterity, visual motor integration, motor planning, bilateral coordination, motor control, attention to task, sensory processing and sensory modulation. Robbie has a loving and supportive family and shows excellent potential for improvement.”

So that is the short version of what we have lately learned. Basically Robbie is at about a 19 month level (he is 36 months) but has a good chance at improvement as long as we keep after it. We are currently getting OT at Achieve Pediatric. We chose Achieve because it works with sensory issues, had an OT opening and is closer to us than our other options. The negative side is that there is no current opening in speech and we are on a waiting list for it. We are also looking for a developmental pediatrician and have found only 2 in Central FL. The one we have been able to get in contact with so far does not take our insurance. Hopefully the other will.  In addition to this we are working on PT stuff at home (with Speech and OT) with our main focus to be core strength.

You can be praying for:

The right Speech Therapist for Robbie to become available soon.

We make the right decision about which Dev Ped to go to.

Financial impact of everything.

Wisdom for Chet and I.

The ingenuity, perseverance and strength to do a good job working with him at home.

Thanksgiving for the ability to seek after the best care we can for Robbie and being in an area where it is all fairly close!