A Glimpse at Therapy

We are learning more and more about Tessa's spastic cerebral palsy diagnosis. Tessa has very high tone in her arms and legs but very low tone in her trunk and neck. Spasticity refers to a high degree of muscle tightness, so we have been a little confused why she is lacking so much strength in holding her head up and in her truck support. We have learned that the combination of low tone in the trunk and neck and high tone in arms and legs, is actually very common. We also found out from the neurologist on Tuesday, that this combination (even as common as it is) makes it difficult to treat spastic CP with medication, because if you treat the high tone in her arms and legs, it ends up being detrimental to the already low tone, in her trunk and neck.

Our neurologist is referring us to a physiatrist at The Children's Center. We have also decided to change Tessa to a pediatrician/pediatric developmental specialist at The Children's Center. Her first outpatient appointment with her new doctors will be in January for her 9 month wellness checkup. It is encouraging to be expanding her 'team of experts' that will help us head off potential issues along the way. Cerebral palsy is not a progressive disorder, but the symptoms of CP can get worse. The physiatrist will be the one helping us avoid the worsening of Tessa's CP symptoms. We have been told that this could include things like botox injections, leg braces, or at some point, maybe the use of a walker. For treating CP, the botox is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in a specific muscle. We have been told that they have had great success with this method of treatment for CP. We're not sure how far in the future these types of treatments/equipment might be for Tessa, but we are very thankful that she will be seen on a regular basis by the doctors that would ultimately be making these recommendations.

It has been very difficult to watch Tessa make slower progress physically. I told the neurologist at our appointment on Tuesday, that "we have had an infant for a really long time". Tessa is not able to hold her head up on her own, she isn't able to posture her own body, she isn't rolling over or able to sit up. These are the kinds of things that are difficult, considering she will be 8 months old this next Wednesday. I did say 'slower' progress, not 'no' progress...Tessa has increased her strength in her neck and she does posture better today than she did a few months ago. We've asked her physical therapist what it will take to get her to where she can hold her head up, roll over and sit up....and simply said: opportunity...opportunity...opportunity. We just have to continue giving Tessa as much opportunity as possible to develop the strength and stamina it will take for her to achieve these milestones. Lots of tummy time, lots of chances for her to lift her head and control the movement of her head lifted up and side to side. The progress Tessa has made is reflected in her tolerance of these opportunities. In the last few months she has gradually begun to tolerate longer periods of time on her tummy and chances to lift and balance her head. It is such hard work and it makes us so proud to watch her find the strength to work harder and harder at it each and every time!

This last Thursday we had vision and physical therapy here at the house. We always have such a good time working with Deb and Melody. We have been working with Tessa by giving her visually stimulating objects to look at that will ultimately motivate her to reach out and touch them. This is the first time she tolerated sitting in her bumbo seat to do therapy (with help and support, of course). These few videos give a little glimpse into Tessa's hard work during her weekly therapy session. It is an incredible thing to watch and to try and understand how difficult it is for her to do all these tasks at the same time...to sit up, hold her head up, to watch a toy and to try and tell her little hand to push the button to make the toy go. What can I say, she's pretty incredible!