SPD Diagnosis & OT Therapy

We'll we are officially diagnosed. She said she has a mild form of SPD called Body Awareness issues which is why she's constantly moving, jumping, climbing, etc. They said we're already doing 150% of what they would recommend so we're going straight to OT which will start within the next 30 days. 1 - 45 minute session per week. She said she's extremely advanced and that since we're catching this early they should be able to help her learn to recognize her body and cope and it should help her speech take off. I'm going to make her a weighted blanket & vest this weekend and she said that is perfectly on target with what her therapist will suggest on her first visit anyway. She said to only do a 1lb blanket because of Gwen's size because anything heavier would likely shut down her nervous system and all she'll do is sleep (so I may also make a 3lb one for night time). She said that a persons nervous system isn't "set in stone" until about 8 years old so we have time to reconfigure hers. This is why she's so clumsy and bumps into things a lot.

Possible SPD and Other Updates

Gwen's ST brought to my attention that she felt Gwen may be suffering from SPD (Sensory Processing Disorder) which could be affecting her communication as well. Gwen tends to hang on EVERYTHING and climb on EVERYTHING. She also will climb or hang when she's upset. She also likes to jump ALL THE TIME. We've suspected SPD in the past, but just adjusted to her needs (built her a hanging bar, bought her an indoor and outdoor trampoline, frequent trips to the park, etc) but the ST feels she may need OT to try and manage the issue better.

I e-mailed our Service Coordinator yesterday and she set up an evaluation with an OT on 10/24 @ 1:00 PM to see if we can get an actual diagnosis and then we'll move forward with therapy if we do.

Gwen is now saying "Bubble" more often and for both Bubble Guppies and Bubbles in general, however we've lost "Daddy" and "Kitty" and most of the "D" sounds. She's still very 'talkative' in her own language and extremely bright, continuing to amaze me & her ST every day.

Will let you guys know how things go.

Update

Gwen did amazing at ST on Tuesday. She said Weeeee and Butter (which has since become butterfly)... yay... she also Neighs while riding her horse.

Then just now when Adam was refilling her water bottle she was saying "Wa Wa"

I am one happy mama!

Current Word List

THANK YOU
MOMMY
DADDY
SPONGEBOB
KITTY
DOGGY
POPCORN
POPSICLE
BOOM
OWW
TRACTOR
HELLO

The funniest thing is she's said all the above words multiple times but if you ask her to say it she shakes her head no.

Great Milestones Today

We were reading a book earlier today and Gwen repeated Tractor, it was pretty clear and well said. Though everything became tractor for awhile.

And then Gwen just said UP. We were in bed and I had my back to her and she kept tapping me and I was ignoring her until she shouted "MOM" so I said "honey its ni ni time" she went into this long babble speel and I said "do you want to snuggle" and she said "Up" I said "did you just say Up?" She shook her head yes, pointed at the ceiling and said "up" again, I started bawling uncontrollably and said "say it one more time for mommy" and she said "uh" just no P sound but it was close enough for me. I think she relates up with snuggling but I am okay with that.

Of course when I called Adam up she wouldnt say it again.

I love that we are making progress. She has  Boom a couple more times she is just very inconsistent with her words.

Speech Therapy 09/17/13

Gwen just finished up ST. Laine was super impressed with how well she picked up on the signing. She wants us to start working on "Ready, Set, Go" and using it a lot and then doing "Ready, Set..." and pausing to see if she will respond or at least try to say "Go". During therapy they were playing with a tennis ball, bouncing it off the wall and Laine kept saying "Boom" after a few times Gwen repeated "Boom". YAY!!!! Laine was also working on the "mmm" sound for more and Gwen kept saying "mmmm" and then "ma" for more. It's a start. :-)

Another Update 09/13/13 "Thank You" and "Help"

We've tried sign language in the past and she just wasn't getting it and now she is picking up on it quicker than I thought possible. While playing with her beads tonight we attempted "Help" (which Daddy has been working on with her) and "Thank You" (which I've been working on with her) and she NAILED them both. :) I even got them on video for you to see. 

So after 3 days we have Help, Thank You, More all consistently used, and we are working on Please. :) The first video is Gwen asking for help, and the second is Gwen with LOTS of more's with a Thank You at the end.  The ST said that as long as the signs were close we shouldn't worry about perfect form (which is why I don't correct her "help" or her "thank you" I just sign them the proper way when I "speak" to her).

Progress Update 09/13/13 "MAMA"

Gwen has babbled "mama" since she was 6/7 months old with consistency, however she has never directed it at me. Well the past couple days she kept running up to me saying "Mama" and then handing me something, or if I wasn't looking she'd yell "Mama" until I looked (think Stewie from Family Guy, LOL). Any who, today is the 3rd day in a row she has consistently said "Mama" or "Mom" and had it directed at me, or while looking for me. 

Well, this is ONE HAPPY MAMA!!!

Progress Update 09/10/13 - "More"

Gwen proved once again how FANTASTICALLY smart she is. We started working on "MORE" in ASL this evening and after about 10 minutes she used it consistently. I actually got one time on video. You can see she thought about it at first, but then realized she couldn't do it one handed so she went back to stirring.

*The squeak that you hear is her way of saying "Yes".

Speech Therapy 09/10/13

We got to meet Laine today, and our Service Coordinator Lindsey came by as well. Gwen instantly warmed up to Laine and loved seeing Lindsey again. Since this was our first meeting we did a lot of talking about Gwen's abilities and any new progress she's made since our IFSP/Evaluation. I advised there wasn't anything new to report. 

Gwen played with food, and the kitty and at the end of our session Miss Laine brought out bubbles which made her ecstatic. 

Miss Laine said to focus on sign language as well as saying the words to help her communicate better with us. She said the first two she wants us to work on is Please & More for next week.

Our IFSP

We got our IFSP (Individualized Family Service Plan) in the mail today. Our Speech Therapist has been identified, her name is Laine and she should be calling us soon to set up our first therapy session.

• Adaptive/self help skills (bathing, feeding, dressing, toileting, etc.) – 22 months
• Cognitive skills (thinking, reasoning, learning) – 20 months
• Receptive Language (Understanding/Following Directions) – 25 months
• Expressive Language (Speech) – 9 months
• Oral-Motor Skills/ Articulation - Informally, Gwendalynn's facial and oral structures appeared intact, symmetrical, and without obvious deformity. During speech production, Gwendalynn exhibited minimal tongue and lip movement.- Mr. and Ms. Pope shared that Gwendalynn primarily produces the sound "p," "m," and "d." This evaluator explained to Mr. and Ms. Pope that the tongue does not move when producing the sounds "p" and "m." When producing the sound "d" the tongue can rest at the bottom of the mouth and the tongue and jaw can move as one unit. Given the significant gap between Gwendalynn's receptive and expressive language skills, limited consonant production, and lack of vocal imitation, it is likely that oral-motor challenges are impacting Gwendalynn's speech and language development.

• Gross Motor Skills – 20 months
• Fine Motor Skills – 20 months
• Social/Emotional Skills – 20 months

While I don't agree with a majority of the other scores, just based on other children I've seen at her age as well as things I've read about accomplishments, it's of no concern to me because my only purpose for contacting them was for Speech Therapy. 

We have the food book created and it is working wonders with her frustration levels and she is a much better eater now that she can tell us what she wants. I am continuing to work on other books, objects, people, places, and animals.

Introduction

Hello Everyone... if you're here it's because you're interested in Gwen's story, so I will give you a quick overview of her life prior to today.

Gwen was born on Friday, October 21. 2011, 10:41 PM at only 31 weeks 1 day gestation. I had mildly high blood pressure throughout my pregnancy, but nothing of concern until about 25 weeks. At that point I was being admitted almost weekly for Urine Protein tests which all came back on the high side of normal but normal none the less.

I monitored my BP at home, but no matter how much stress I removed from my life I couldn't keep it low. On October 19th I was admitted for another test and released on the afternoon of October 20th stating everything was within normal range, but to watch my BP and to be on the look-out for "right upper quadrant pain". I went home and went about my boring, nearly bed rest day. My husband was working 3rd shift at the time so after he headed off to work I headed up to bed.

3AM rolls around and I am woken up by the worst pain I've ever experienced. It was just below my ribs on my right side. I tried to put pressure which alleviated it a little or at least seemed like it at the time. I knew i couldn't take anything so I just tried to relax in bed thinking she had stuck a foot in my ribs or something. After a few minutes I remembered the Doctor saying a glass of ice cold water could make baby move so I downed about 32 ounces quickly. Still no relief an hour later. I text my husband and told him as soon as he got home I was heading to the hospital (he had the car with him at work and the hospital was an hour away). I stayed in bed and when I heard the back door open I rushed down the stairs.

At this point I'm throwing up from the pain (it's my reaction to severe pain). He asked if I wanted him to take me, but I said I was okay to drive (which I later got yelled at for by the doctors at the hospital). I arrived and went straight to L&D and because I had become a frequent flier they recognized me and got everything ready.

They took my blood and urine and did an ultrasound. They said that Gwen was still breech and was no where near the pain location. Once my urine tests came back they confirmed my proteins were off the chart. They gave me some medication to lower my blood pressure because I was 208/125 at this time. They were waiting for my blood test results, but were still admitting me anyway. They monitored me throughout the day but could never get my BP lower than 180/110 and said I would likely be staying in the hospital until I delivered. "9 WEEKS!!! Wow!" was all I could think. But every test they ran said Gwen was in no distress, she was resting comfortably, though she hated the HR monitor on my belly so she constantly moved and a nurse had to sit with me all day to keep readjusting so they could keep a watch on her.

Later that evening a doctor came in and began explaining HELLP syndrome to me, which is something I had never heard of before, and have come to find out many other people (including many doctors) haven't heard of it either. The simplest definition I've found is from Wikipedia "HELLP Syndrome is a life-threatening obstetric complication usually considered to be a variant or complication of pre-eclampsia. Both conditions usually occur during the later stages of pregnancy, or sometimes after childbirth. "HELLP" is an abbreviation of the three main features of the syndrome: Hemolysis...Elevated Liver enzymes...Low Platelet count" It turns out that the vomiting wasn't from the pain itself, but a symptom of HELLP.

After the doctor explained HELLP and everything that was going on he proceeded to say that they were going to have to deliver within the next 3-4 days and would have a NICU doctor come in and answer any questions I may have, they were going to start me on steroid shots to try and mature her lungs faster to give her a better chance of survival. At this point I broke down, I wasn't even 32 weeks pregnant, I wasn't due until Christmas and it wasn't even Halloween. Would my baby survive? If she does what kind of life will she have? I was devastated.

At this point my husband had come up with my SD to bring me clothes and some toiletries since I was going to be there awhile. Since the doctor said 3-4 days I sent him home. 

The NICU doctor came in moments later along with a nurse to administer my first shot of steroids. She began talking statistics and numbers and possible complications and asked if I had any questions, but all I could say I was no. My head was spinning, I wasn't sure if it was the steroids or the BP meds or the fact my BP was 228/180.

About 30 minutes later the nurse came in to check on me as my BP wasn't getting lower. I told her I was a little dizzy but I didn't think the lights were helping. She asked what I meant and I told her the lights were flickering (it looked more like photography flash, but I knew that wasn't possible). She instantly turned and ran out of the room. A doctor came in and checked my eyes, my BP, and some other things and then said "We have to take the baby now, it's not safe anymore" and I remember grabbing my phone to text Adam and tell him they were taking the baby.

Right as he arrived they started prepping me for a regular delivery. They got the stirrups out, the lights, the mirrors, etc and started to administer Pitocin. Once I realized what was going on, I started to yell "She's breech, she's breech" and the nurse said "no honey they are turned by now" and I just kept yelling "No, she's breech" and so she went and got a portable ultrasound machine to "ease my mind". Sure enough she was breech. They instantly clamped off the Pitocin and gave Adam scrubs to prep for the OR. They did everything they needed to for me (I honestly don't remember much).

My caesarian section was as routine as they come. I do remember feeling like they were moving my lungs around, like I could feel every touch just no pain. It was VERY odd. Adam kept trying to make me laugh to calm me down but I was too freaked out. As soon as they pulled her from me I heard the "It's a girl" and suddenly like 10 people start shuffling around. After they suctioned her I heard a few squeaks which the Doctor said was a great sign. They wheeled her over in the incubator for a brief moment so I could see her before they took her up to the NICU.

From that point I have no memories until the next afternoon, except for a brief moment around midnight when Adam brought me a picture of her from when they finally let him meet her. Then I remember waking up around 2P asking to see her and they said I still wasn't stable and would have to wait until Sunday. Sunday morning rolled around and they said that I had to eat breakfast and lunch and shower and then I could go up. The morning DRAGGED on.

I was released the following Tuesday afternoon and she remained in the NICU 27 uneventful days and was released on November 17, 2011. She had no As/Bs, no ROP, and all her brain scans came back completely normal.

Life was normal, she was hitting every milestone on time or early so we thought we were one of the lucky families. Fast forward to 18 months. I notice she's still not talking like my friends kids (I know, I know you're not supposed to compare children). So I said something to her doctor. He said he wasn't concerned because she was babbling and we'd reassess at her 2 year appointment.

At 21 months she still wasn't talking, just babbling and I KNEW there was something wrong so I called for a developmental evaluation.

They just finished up and it went well. She is developmentally far ahead of her actual age. She was able to identify things in pictures (sleeping, eating, washing, shoes, pants, dog, cat, etc., even things I had no clue she knew) and follow complicated directions to a tee. She scored above her actual age in all categories except speech. They said that she is very smart, affectionate, well mannered and were very impressed with her all around.
The ST noted she doesn't move her tongue or lips much when she does "talk" so she said it's clear that her issue is motor not psychological/developmental. Checked for a tongue tie and there is none.

She did give us some tips until our ST is identified/assigned (she was just the evaluator), like holding objects near our mouth when we name them, speak in a more sing-song tone, repeat things multiple times, identifying everything we're touching//doing, all actions, items, etc. When at meals, identify options and repeat what each item is, "Do you want chips or french fries?" once she picks "You're going to have _____ with lunch." Also they want me to create a food book to help until her speech develops (though I may expand on that and add in options like "Broken" "Play" etc), they suggested taking all the food labels and putting them in a book with the word below it to help her identify what she wants rather than us going through a long Yes/No checklist. We also need to try to get her to imitate things, movements, gestures, sounds. They said once we can get her imitating speech with come quickly.

Their version of speech therapy isn't only them working with the child, it's a family affair. They come in and go about our normal routine 60 minutes a week and show us different ways we can help her learn to speak as well as working with her. We should have our therapist identified within the next week and then our first session should be within the next 2.

We should get our IFSP (Individualized Family Service Plan) in the next few days and it will detail out every part of all 6 categories they evaluated her on as well as our "plan" for her ST.

All in all I am very happy and excited especially to know she is so smart, I already thought so but to have professional confirmation is nice.

Well this is where we are through today and as her sessions happen and things occur I will share.