Sensitive Material (update)

Today was our first Early Intervention session at our home. First let me say that being place with someone was no easy task. Remember when they told me that I would be contacted within 28 days and that it would probably most definitely be sooner because our availability was so great? Well after 29 days of hearing absolutely nothing whatsoever, I contacted our coordinator to see what was up. It then took several more days for her to find someone that could service our area that specialized in what The Chubs' needed. Her schedule was very limited so I basically told her whenever she could come, to come because we NEED to get the ball rolling.

Well to make a long story short, I absolutely love her. She's wonderful and The Chubs loves her to death (she was smiling at her and showing off the entire time). She's great with kids and actually had a child with reflux so she gets it. From what she observed, The Chub Muffin has a lot of sensory issues, which is why she is hesitant to grab for things, touch things, and eat from a spoon. She also gets agitated by loud noises and often cries when she's moved from place to place or out of the bathtub. I was an idiot and didn't pick up on any of these cues until recently. I guess I figured it was "normal" behavior. I guess not.

Her thought is that she is not napping well due to these sensory issues and because of her short naps, it's compounding the problem. She wants to work on getting her nervous system regulated so we can get her to sleep better and not be as sensitive toward textures, various positions, noise and objects.

I also finally (with a lot of effort on my part) got her enrolled in the feeding therapy program at Children's. Nevermind that the head of the department STILL has not returned my calls regarding getting her placed. I had to dig up an old number we had from the NICU when The Chubs was seen by an OT for her lack of suck/swallow/breath coordination. If I hadn't had that number who knows how long this would've taken. I love this OT as well. She is wonderful and got my daughter to take several bites of food. Something we have not been able to replicate since, but at least I know it's possible. She also suspected sensory issues and sent me home with a questionnaire.

In other more interesting news, The Chubs has finally learned how to roll from back to tummy. She did this a few times during nap time and at night where she proceeded to sleep on her tummy for quite some time. I'm hoping this becomes a favorite sleeping position because it's supposed to be one of the best positions for reflux. It has to be all her idea though. And yes, she did technically roll from back to tummy around 6 months but it was an accident. One she was determined not to repeat for quite some time because she normally hates her belly.

Her second tooth is in now and all though they have not come all the way up, they are getting there everyday. She still seems to be in discomfort, however. I'm sure having heightened senses probably doesn't make it easy.

Finally, she is beginning to wave when I take her to look at herself in the mirror. It's kind of a shy wave at the moment, but she gets a kick out of seeing us together in the mirror. I also think she's beginning to sign "Mom". I've shown her this sign for several months now and every now and then she does it. The other day she did it while saying "mmma", so I think she knows what she's doing. It's anybody's guess!

She Qualified

Our morning started with a bang when I got The Chubs up at 8:00 to start our day. I figured I would give her a bath and wash her hair before the evaluation so she didn't look like a white trash, neglected baby (although, maybe that would win the sympathy vote). She doesn't mind baths themselves, but still hates getting out. Even if I immediately transfer her to the towel, she continues to cry for 5 minutes after the 2 second ordeal.

As usual, when I brought her out, she acted as though it was the end of the world. We're talking frantic, high pitched screaming. As she often does, she gagged while crying, and just as I was going to reach for the paci to calm her down, she threw up all over the place. And again, and then one more time. It was very mucousy and so she had a little trouble breathing for a minute. I'm convinced she puked up her entire 5am feeding.

I gave her a little time to recover before I tried feeding her again. We just recently bumped her feedings up to 26 cals/oz from 24 cals/oz and I'm wondering if she isn't tolerating the richer diet as well. I ended up giving her some breastmilk without the added formula for her next feeding to help settle her stomach. She seemed to do fine and actually at 4 1/2 oz (which is a miracle around here these days).

The evaluation went really well and she was in great spirits for it. Everyone was very supportive and encouraging and worked really well with The Chubs. She seemed to dig all the attention. The evaluation lasted about an hour and a half. They observed several areas while she played including fine motor, gross motor, and speech/communication skills. The speech therapist reiterated what we already knew... that she was doing great in the communication department. They said her sitting skills were very good and that overall she was doing fairly well in gross motor. Her fine motor skills are lagging, which is why we brought her in the first place, but they said she has a lot of skills that they can build on to help her improve in that area. In the end she qualified for therapy with feeding (which we desperately need due to her oral aversion), and fine motor skills.

I have to say, I was incredibly relieved. This means that someone will be working with her as long as needed to get her caught up and if something else comes up that she needs help with along the way, since we already qualified for the program, they will simply set us up with a different therapist that specializes in whatever she needs. I feel like I finally have the support I need to help The Chubs reach her fullest potential.

Some observations they had regarding her fine motor skills:

• She's a little apprehensive to grab and reach for new things. They'll be working on her comfort level with experimenting and touching objects that she is not familiar with
• The simpler the toy, the better (which kind of goes hand in hand with her apprehension to grab or touch items that are too loud, or feel very different). They had some great very simple items that she grabbed for and held onto for a long time. I think we need to go shopping for some new toys for her.
  
• She needs to be able to observe the toy from afar, and from about eye level before she feels comfortable grabbing it. Once she has it she needs time to adjust to it before she brings it to her mouth. A lot of this sensory stuff also sheds some light as to why she doesn't want to open her mouth for a spoon and solids. They will be working with her to get comfortable with the spoon itself and the food before trying to get her to eat from it.
• Overall she's much more interested in faces and people (which they could clearly gather from our play time), so putting toys up by our face to attract her attention definitely helped. They also recommended putting food on my face for her to grab and experiment with feeling the texture (it grosses me out thinking about it, but hey, whatever works!).
• She also loves to play with her feet, hands and clothes (all of which she has more control over) so putting toys on her wrists and ankles that make noise might be a good way to transition her into feeling more comfortable playing with objects outside of herself.

We should be hearing from the therapist within the next few weeks. I'm so thankful we're finally getting a service that is free and that they come to our home. I just really hope we like the therapist and that he/she works well with The Chubs.

GI Update

So Friday was a bit exhausting, but I'm so glad that we were able to get The Chubs in to see Dr. N 3 weeks before originally scheduled.

This is what I ended up getting from the appointment:

• The Chubs has only gained 2 oz since June 25th
• She's lost .5 oz in the last week
• We are now concentrating her milk to 26 cals/oz instead of 24
• Her last tests all came back normal (blood, urine, stool)
• We'll give it 3 weeks to see if the Prilosec works any better for her than Prevacid
• If it doesn't we'll schedule a PH probe and endoscope to see if she has inflammation of the esophagus that may be irritating her
• If she continues to eat poorly and not gain or gain very little, they will suggest an NG feeding tube which we will be instructed on how to place
• I need to see a therapist for the toll this has taken on me emotionally (feeling like I can't provide for my child's basic needs - feeding her). And that it is not my fault that she is not eating well (the doctor repeated this many times and told me to get rid of any guilt I may feel).
• Feeding Therapy is very important for The Chubs and waiting 6-8 weeks to get in, to me, is unacceptable (that is 1/4 of her life). A social worker is working with us to try to get her in sooner because of the severity of the situation and her age.
• I need some chocolate. And lots of it.

So that, in a nutshell sums up where things are right now. Monday is the Early Intervention evaluation and I'm trying to prepare for it emotionally. They only accept children that are below the 10%ile in any given area. What if The Chubs is the 11%ile? I think I'll have a break down. That, in my opinion, would be the absolute worst. More to come on monday ...