Wednesday, December 30, 2009

Speech Evalution, PT, and Feeding

Warning: This is going to be a long post.

Speech Evaluation: Randy finally received the speech evaluation that was ordered by his pediatrician in October. I think that initially the scheduler forgot, then he was out for surgery. This is the second evaluation he has received. The first on was in late March. The ST suggested that we wait for speech and concentrate his therapy time on PT and OT and feeding (he does feeding with his OT). Well I am anxious to get his speech started because his OT is pregnant with twins and is high risk. She has already sent Randy to someone else for his developmental therapy due to lifting restrictions, so I wanted his speech therapist to be able to step in with his feeding if she was suddenly put on bed rest (I know that can happen in the blink of an eye).
Although Randy does not have a lot of words, I realize that he communicates with us pretty well. If he wants to play, he grabs your hands and starts to clap. If he is hungry, he has this shrill kind of whiny cry that is very distinctive. He can ask you to pick him up. And he certainly has the words "all done" and "bye-bye" perfected. He speaks this gibberish, but I know in his mind he is truly trying to communicate. He uses inflection and different tones of voice depending on what he is trying to say. I think he just truly cannot make certain sounds.

He certainly understands most of what you tell him. Amy, the ST, asked me if he would retrieve items upon request. I told her know. Well, later that week, I thought about I would see if he would retrieve something. I was sorting clothes in the hallway and asked him to go get me a toy. He quickly crawled away and came back with this:

I was so impressed with my baby. I think he does not retrieve items because we do not ask him to. It is amazing the things we naturally don't do with children if they have a motor delay. I'm sure I would have asked him to give me something a million times if he were walking.

The report states that average ability scores fall within a range 90-110. Randy's scores were:

Receptive Language 87/19 (ability score/percentile rank)
Expressive Language 97/42 (ability score/percentile rank)

She is recommending therapy once per week.

Physical therapy: Randy gets all his therapies while he is at daycare. That is actually the main reason he started daycare this year. The upside is that they can adjust his schedule if the therapist will be off on his regular day or any other conflict. The down side is that I do not attend therapy with him. So when I am off work, I try to attend. They changed his regular Friday session to Monday due to the holiday.

Randy is officially crawling on all fours, and almost never belly crawls anymore. Bobbie, his PT, is working on him pulling to stand, cruising, and bearing weight for longer periods of time. Well while she is working with him, he is being the little stinker that he can be at times. He is rolling around when she wants him to stand or buckling his legs. She then starts to tell me how he has been very uncooperative since he returned from surgery and that his lack of cooperation is going to impede his progress. She says that the classroom teachers are having problems with his behavior and that he is biting other children. I am pissed!!!! I'm not mad because she is telling me these things, but I am mad that she is saying something instead of the classroom teachers. I am mad because I have emailed her on several occasions telling her how I want and need feedback from his sessions. And then she hits me with this!! Like she's at the end of her rope! Like this is some huge problem that needs to be addressed ASAP! Why didn't she email or call me when it was a small problem??

So I tell her that I had no idea that things were this bad and that I have been voicing my concerns with feeling disconnected from his therapy since he started daycare. I ask her what can I do to help improve this problem. She says that we need to all be consistent in what we do when he misbehaves or resists. Then the light bulb goes off.... She thinks that we spoil him at home and at the sitters. All the while she keeps giving me this look like "see what I mean" every time he resists or whines or has a meltdown. I tell her we will work on it. She tells me she will ask the coordinator to look at her schedule and try to schedule him late afternoon on one of the days he attends daycare so that I can attend a little more regularly.

Somewhere in the midst of the therapy and drama, I ask her about Randy's future mobility. Age 2 is about the time that mobility and being upright with your peer group becomes more important. The PT feels very confident that Randy can/will walk. She says she is not eager to jump into a lot of assistive equipment the moment he turns two. She is eager to see what the orthopedist recommends in January when he goes to the CP clinic. She says that she will start to put him in a Kaye walker to help him practice the movement of walking. The thought of a chair is not in her mind and I am OK with that.

Kaye Walker

Feeding: Again, because I am off for two weeks I wanted to attend feeding therapy. I planned to attend twice, but had to cancel because Randy was really sick last Tuesday. I have written several times about Randy's difficulty with eating. He really has only a couple of table foods and yogurt and purees. He is growing on his current diet.

I think the PT and the feeding OT have been talking to one another. She said that Randy does not like to be challenged. She said that a lot of that was due to his age. We talked about how much progress he'd made this summer and attributed a lot of this to the fact that I was basically the only one feeding him. We talked about his schedule at school and the adaptations he has to make between the days he's in daycare and the days he is at the sitter and the weekends. She says that consistency is going to be key to his progress. That's when the second light bulb went off.

While we were talking, she fed him some beans. He gave her resistance, but did not cry like he does with me. His feeding therapist has been able to get him to eat things I never could. But, I was surprised to see the small amounts they were considering eating. These definitely do not constitute a meal. I learned how to stretch his cheeks in addition to using the NUK brush. She also suggested buying an electric toothbrush.

So, I have a lot to process about the therapies and what I am going to need to put in place for Randy's continued progress and how I am going to need others to support these goals.

Monday, December 28, 2009

Christmas 2009

Randy had a pretty good Christmas considering he was not feeling well. He was still fatigued, a little feverish, coughing, and had a runny nose. He is still not old enough to rip into presents, but he enjoyed his loot once it was unwrapped and put together.

Thursday, December 24, 2009

Dear Santa,

Please take away this cough, runny nose, and fever for Christmas. Mom, Dad, and Grammy can handle the toys.

Love Randy

Thursday, December 17, 2009

He looks so good!!!

Do you know how many times we heard this today? At least 5 times. We heard it from the receptionists. We heard it from the medical assistant. We heard it from the nurse. We heard it from the physician assistant. We heard it from TWO neurosurgeons!!!

Randy's post-op visit went spectacular. He weigh 22 lbs 12 oz and he is a tad over 32 inches long. He is "on the chart for both height and weight now" (albeit the 10th percentile). His head measured 45 cm (still not on the chart, but growing). His vitals were good. His reflexes were good. His incision is healing great. He has the go ahead to do anything he wants (although he did discourage me from swimming lesson until the weather breaks).

And the best news of all is that he does not return for another 6 months.

Sunday, December 13, 2009

Tuesday, December 8, 2009

Randy and Mommy are sick

I took Randy to the doctor yesterday after work. I was going to just nurse his symptoms at home, but I remembered what the neurosurgeon said to me when he discharged him from the hospital from his last shunt revision. "If he gets sick, be very aggressive. Take him to the pediatrician." I told his pediatrician exactly what the neurosurgeon said. He chuckled. He understands how important it is that Randy does not get a shunt infection.

Randy added a new symptom each day: Friday-rash, Saturday-runny nose & sneezing, Sunday-cough & low grade temp. His ped listened to his lungs and looked at his rash. He said his lungs sound junky, but he did not think it was classic pneumonia. Instead he thought it was RSV and/or Mycoplasma (walking pneumonia). But guess what? His ears looked great. The ped gave him a Z-pack and told me to push fluids, rest, blah blah blah. He did say that I need to call him if his temperature spiked high or if he started wheezing. He also did a swine flu test that he sent to Children's Hospital. I should know those results in a few days.

So on to good news. Randy pulled himself to stand from his knees!!!! He was leaning like a plank against a building, but he did it! He only lasted a few seconds, but he did it!! Sorry I did not get a pic; it happened too fast.

So despite runny noses and coughs, we are all pretty happy over here with this latest accomplishment.

Saturday, December 5, 2009

Back at daycare

three days and guess what? Randy has a runny nose! He also has a rash on his back and neck. Do you think their related? Should I be worried? Leave a comment and let me know.

Tuesday, December 1, 2009

Randy's suspension has been lifted

Randy was suspended from daycare. Not by the daycare; but by the doctor. The neurosurgeon did not want him in daycare after his surgery for fear of infection. He was released to go last week, but the director and I agreed on this week because of the holiday last week.

Randy was beyond excited to go back to daycare. Now he loves his sitter, but I think he likes all the toys at the daycare and the other kids. He began squealing when I pulled into the drop off/pick up area. He was saying ma-ma, da-da, and bye-bye. He almost jumped out of my arms as I was carrying him down the hall way.

The OT emailed me yesterday to talk about his feeding. I told her about all the issues I was having. Well guess what the stinker did? He ate orange and toast for her!! Now he would not eat lunch for the classroom teacher; they had to give him baby food. Am I going to have to go back to school to study occupational therapy in order to get my son to eat table food?

Randy shared his new skill with them; I haven't shared it with you guys. Randy can crawl on all fours!!!! He is crawling on knees about 60% of the time. He is so tickled with himself and I am so proud of him.