When Jake was about 4 months old, his pediatrician noticed that his head had some mild flattening on one side, which was due to a condition called positional
plagiocephaly. We met with a neurosurgeon to have him evaluated and had an ultrasound of his head done to rule out hydrocephalus. So many scary thoughts went through our minds during that time. Although Jake did have a higher amount of cerebrospinal fluid, they ruled out hydrocephalus and our minds were put at ease. We were told to focus on "tummy time" and head positioning, so that he didn't spend so much time on his back. If we did not work quickly to reverse the flattening, we were told that Jake would require a helmet (temporarily) to help re-shape his head. At that time, we felt that was so incredibly awful...our child would have to wear a helmet!?! What were people going to think...what mean things would they say about our sweet boy?
If only we knew then how silly it was to worry about something so trivial as a helmet. Do you know what we would have given for a helmet to be our biggest worry?
From that point, we began taking Jake to physical therapy at Children's Hospital Oakland in order to help us with positioning Jake and working with him to improve his tolerance for tummy time, which he absolutely HATED! After several sessions, it became apparent that Jake had low muscle tone, so we also began focusing on other exercises to help with his head control (e.g. holding his head up straight) and strengthening to help with getting him to bare weight on his legs, as well as focus on sitting. We spent MANY, MANY hours at home working with Jake, which were filled with MANY, MANY tears from Jake who hated doing all the exercises and being pushed to do things he didn't like. We also encountered barriers to getting therapy approved since Jake didn't have any sort of diagnosis that would require therapy, so like most of his health care needs...we had to fight for it!
It wasn't until we received his Niemann-Pick diagnosis that we realized why these skills were so difficult for Jake. Jacob's low tone was part of his disease. Our hearts sank when we realized that many of these tummy time exercises were probably uncomfortable for him due to his enlarged liver and spleen. It's no wonder that he cried at every physical therapy appointment. In fact, it got to the point where we didn't even want to take him to therapy because it was so exhausting and tear filled; basically a giant waste of time! We had to bring him out of the house; drive 45 minutes (each way); feed him before his appointments, so he was content; carry him over to the main hospital through germ filled areas; all that -- just to endure 5 minutes of actual quality therapy that we could do ourselves at home. Yet, we knew Jake needed to continue on with therapy to ensure he gained new skills and progressed developmentally. Did I mention the scheduling difficulty due to lack of pediatric physical therapists?? It was so discouraging!
Right around that time, we were working with the
Regional Center of the East Bay to initiate services for Jacob to better meet his specific needs. We were approved for in-home infant development therapy, which meant a certified occupational therapist would come to our home to work with Jake...no more messing with Jake's schedule, dragging him to appointments he hated and risking exposing him to other kid's germs. This was great news!!
Shortly before Jake's 1st birthday, Jake's amazing therapist Christina walked into our front door and turned things around! From day one, we knew she was the perfect fit for our little man. Tear filled sessions turned into smile filled play-time with Christina -- Jake just loved her and so did we! Christina came to visit twice a week for over a year and was patient, kind, understanding, and loving to our family. She worked with us to find different and fun ways to engage Jacob in play that would help his overall development; from physical skills to communication skills. She came up with different ways to help Jake with tummy time, which included a giant therapy ball, a Bosu ball, mirrors, boppy pillows, rolled up blankets...you name it, we tried it!
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| This is "Rody", an inflated rocking horse used to help with balance and coordination. He was more commonly known in our house as "Crazy Rody" or the "donkey on crack". Let's be honest...it is not a good looking toy, but Jakey loved bouncing on him and it helped a lot with his balance. |
Jake never was able to talk, so Christina worked with us to better focus in on ways that he WAS ABLE to communicate with us, such as kicking his legs in excitement when he like things and wanted us to do something "again" (one of our words that we used for queuing an activity). I know Christina is probably reading this now with a great big smile remembering all of our happy moments playing peek-a-boo with Jakey : )
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| Christina got Jake this awesome blue chair to offer an alternate way to keep him off the floor, while supporting him. He loved sitting in his chair and banging away on his xylophone during his therapy sessions. |
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| Jake using his Z-vibe, which helped with oral stimulation. We realized he had some oral sensory issues that caused him to gag, so we used the Z-vibe to help. He ended up LOVING this thing! |
It wasn't all fun and games -- therapy did require a lot of work from Jake and us. We had to practice these various learning opportunities and recommendations every day/several times a day! Each visit, Christina would write down the things we needed to try and focus on. Jacob went through periods of great progress and then we would see periods of skill regression, which was always so hard to see. However, Christina would always adjust the routines and we'd come up with new ways to engage Jake in play. She was also the first person we asked to help us navigate through selecting adaptive equipment that Jake needed, such as a bath chair and wrist splints.
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| Christina brought Jake a bunch of balloons for his 2nd birthday! You can see his favorite switch toy in this pic...yet another fun idea to engage Jake with super touch sensitive toys that came in handy as Jake's disease progressed. |
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| Jake wasn't too thrilled about his wrist splints, but they helped with the muscle tightening and wrist curvature that worsened as Jake's disease progressed. |
I've wanted to write a post about Jacob's therapy for quite some time, since his infant development therapy was an integral part of our daily routine for most of Jake's life; during the course of which, Christina became a dear friend -- an extended member of our family. In fact, just yesterday she came for a visit to meet the newest member of our family, miss Kelly Joy!
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| Our favorite therapist Christina playing with Kelly. We are so bummed that we don't even have one picture of Jake and Christina together. Josh would be there for a lot of Jake's therapy visits since I worked during the day, so Christina would often text me pictures and updates. I'm glad we at least got pictures of him trying out the many different approaches to play and development that Christina came up with. |
This blog post is more of a 'thank you' to Christina, who opened her heart to Jacob and our family. We are so very grateful that she came into our lives! We have met some incredibly wonderful and loving people that helped support us through our journey with Jacob and Christina is at the very top of that list. She was by our side with every new milestone, cheering Jake on, as well as with every struggle and set-back...still persevering along with us and cheering Jake on!
If you're ever in need of a good therapist...the pediatric occupational kind, not the 'sit on the couch with a box of Kleenex kind' -- Christina is AMAZING!! Sorry, shameless plug for Christina because she is so wonderful and she recently started her own independent practice.
Christina
Child's Play Occupational Therapy Services
www.childsplayotservices.com
