Friday, January 22, 2010

CP Clinic

They had cool mats so he could get on the floor

By this time he was past ready to go!

Randy finally had his first visit at the CP clinic. I must admit it went surprisingly well. I was nervous and just wasn't sure what to expect. He saw several people; some were doctors, some were not.

We arrived at 7:44a for his 8:00a appointment. We were signed in and in a room by 8:05a. The nurse took his vitals and stats, and explained that we would see many people and they would come in whatever order they were available and the we were free. BTW, my little man weighed 23 lbs exactly and was 33 inches long and his head circumference was 45 cm.

He was first to see Randy. He asked some questions about Randy's health history and examined him. He said that he has tightness in his hip and heel. His feet turn in some, and that he may need surgery in the future for this problem. This surgery would help his gait and make him more stable once he begins walking. He also suggested AFO's (ankle foot orthotics) once he is doing a lot of standing and cruising. This will provide him support needed to learn to walk. He did not want to put him in them now since they will restrict his ability to crawl and transition in and out of sitting. He says that being in a stander is OK, but not absolutely necessary since he crawls well and can bear some weight. He said that if he has access to one, then he can use it; but by no means should one be purchased for him.

She reviewed Randy's chart and made note that he is followed by the feeding team at the children's hospital in the next city (same hospital as his neurosurgeon). She said that his growth looked good. She had weights from other times he'd been at the hospital, and she plotted those stats on a growth chart. His height is really taking off and he is in the 25th percentile for height. His weight is following a great curve also and he is in the 5th percentile. All of these are for actual age. His height to weight ratio is a little low, but nothing to be concerned about. Height to weight ratio should be somewhere between 90 and 110; his is 87. She said to continue to follow the recommendations of the feeding team.

Social worker/car seat specialist:
Her visit was a waste. She came in, looked at him and said "Oh I'm sure he's fine in the seat he's in." She says this based on the fact that he is sitting and crawling and is not severely involved. Who made her a doctor? This is the second time I've seen her. The last time was at her office when she was supposed to give Randy a special needs car seat. She gave him a car seat that was not very functional for him and certainly not a special needs car seat based on her assessment of him, not based on his medical needs. I'm not angry about the seat (I bought him another one) because no one owes him anything, but I don't like the fact that she is making these judgements and she is not a medical professional. I don't want anyone making assumptions about Randy; whether they are overestimating him or underestimating him. But that is a topic for another day.

Physical therapist:
She was wonderful. We talked about his current therapies and his skill level. She felt his current therapies were appropriate. We talked about his feeding issues; she gave me a lot of encouragement. She shared some personal stories about her son (although his feeding issues were milder than Randy's) and his struggle to eat an age appropriate diet. She said that is is a process and that it will not happen overnight. She made me feel very hopeful that he will eat normally in the future.

Speech therapist:
She was also very pleasant. We talked about the words that Randy had and what he seems to understand. I told her he was starting speech therapy that same afternoon. She said that he was doing a good job and that his speech was not too severely delayed. Then she hit me with a whammy! She said it's time to get rid of the pacifier and the bottle. She said to start with the paci since it has no nutritional value. I had already banned the pacifier from daytime use and only make it available at night and for naps. I'm dreading taking it away. She then told me to have his feeding therapist and his speech therapist help me get him to drinking from a straw. Not only will this be easier for him to hold (he can't hold his cup and tilt his head back to drink), but it will strengthen his cheek muscles which will help with speech and overall feeding. Once he is able to take a few ounces by cup at one sitting, then I need to start pulling back bottles and/or replacing the milk in the bottle with water. Wish me luck.

Developmental pediatrician:
This lady is fabulous!!!!! She spent so much time talking to me and looking at Randy's scans. She reviewed his medical history. She repeated some of the things that the others told me and tied them together. She was AMAZED that the boy she read about was the same one in the office. She said that he not behaving the way he looks on paper or in his scans. She said that cognitively he seems to be at about 15 months (from her observation); she did not do a formal assessment. She wants me to step up some cognitive activities with him. She, the orthopedist, and the physical therapist all feel he will walk (of course I can't hold them to that). She honestly feels the biggest hurdle to his development will be his vision. She gave him the official diagnosis of: spastic diplegic cerebral palsy.

I left this appointment feeling very encouraged. I was wondering if his therapy needs were being met or if there was more I should be doing. It looks like we are doing all the right things for Randy. We left at 11:28a on our way to radiology for hip x-rays. He returns in six months.


  1. I'm not a medical professional, but I think the stander is a good thing for him. If he is not consistently baring weight, then it would at least bare weight on his hips/ankles and hopefully avoid a surgery. I'm also very surprised that they didn't go ahead and give him AFO's. They do have some with articulating ankles, and they come in different heights. To avoid a surgery later, it might be worth a second opinion on the AFO's. You have the stander, so that's nice.

    There are some nice reasonably priced special needs carseats, and you can always request money from CMN - Children's Miracle Network. They give up to $500/year.

    I hope I haven't affended you, I certainly don't mean to. Your little man is doing so well, and surgery is the pits.

  2. Shannon you definitley have NOT offended me. I appreciate advice from a mom who's been there. Keep the advice coming. Any suggestions of car seats? He is really long; and growing fast lately.

  3. The clinic sounds awesome! *minus the social worker ;0)* Jacob had his well baby yesterday and he is plotting the same way...on the adjusted chart he is in the 50% for ht and 5% for wt. It's funny because I am bracing myself for the "toss the bottle" speech from the docs. It will be super tough...knowing how hard they worked to be able to use the bottle...and how much he loves it. *don't tell anyone but my Grace *age 3* uses her paci at night and during crazy medical appointments* I know the docs would be moritified...if they knew. ;0)
    Thanks for visiting me :0)