Therapy Time.

Corrigan receives therapies in school according to his IEP.  He is making nice strides in speech and those in-school therapies seem to be helping him achieve set goals, but I wanted to maximize this burst of learning that has been taking place over the last few months. Corrigan’s insurance coordinator has been dedicated to helping Corrigan in any way she can and she made some calls and found him some additional therapies in our county.  We have just been so fortunate the people put in our path since Corrigan was born.  From case workers, to service coordinators, to medical professionals and even just kind-hearted folks that want to help by cooking a meal, offering a ride or lending an ear when I get overwhelmed.  We have been so blessed during this time.

In addition to extra speech therapy through The League (formerly The League for Crippled Children),  Corrigan also now has weekly Occupational therapy through our local health system.  This was a huge relief to find because Corrigan’s in-school therapies primarily deal with helping him achieve educational goals but he needs extensive therapy to help him reach life skill goals.  At nearly 4 1/2 years of age, Corrigan is unable to dress or undress himself (aside from taking off his own pants), properly use a spoon or fork, follow two-step commands and many other skills too numerous to list.  He needs all of the extra help he can get and we are so thankful for the plethora of agencies in the area that assist him.

Corrigan “graduated” from Physical Therapy around 15 months of age and we believed that he was 100% on-track for gross motor skills, however we have recently learned that his range of motion in his shoulder is still being impacted by the Erb’s palsy he had from birth (and we thought was resolved) and a poorly healed clavicle fracture from last December. The palsy is in his right shoulder and the broken clavicle in his left.

His shoulder issues are a hindrance in learning to take his own shirts on and off, but he also has a lot of anxiety about his g-tube button and tenses up tightly anytime I come near his stomach area, including putting on, or taking off, his shirt.  He protects that Mic-Key button at all costs and that has also caused some core strength issues.  Added to that we have been told that he has low-tone in one of his legs, and it is difficult to get a good reflex response when tapped on his knee.  It looks like physical therapy will be added to our list of appointments again and I am also on the hunt for a behavioral therapist as well.

Whew, exhausting but worth it.

In the meantime, his OT is working on improving flexibility in his shoulders by setting up activities that force him to stretch and reach. Corrigan likes moving rings from one side of an arch to the other…

…but was most unhappy when the therapist later added a few extensions to the arch that forced him to stand on tiptoe, and use both hands, to manipulate the rings from one side to the other.  He accomplished the task twice actually, but he cried and fussed the entire time.  We have been told that Corrigan “does not like to do hard things” and boy isn’t that the truth.  He doesn’t enjoy it, but he will do it.  Begrudgingly, and with drama, but for the most part at least he still does what is asked of him.

His therapist has also been working with rings and having him put them up his own arms to help him understand how sleeves will work on shirts and also working on having him get used to moving his body through things (like tunnels and boxes and under blankets) to prepare him for the sensation of forcing his limbs into tighter spaces (such as pants legs and the neck of shirts) on his own.  I have mentioned before that Corrigan has some sensory issues and these activities are geared towards helping him overcome some of those.

The last few sessions have been working towards putting on his own shoes, but slowly building up to that by instead first working on pulling up a pair of over-sized rubber boots.  These frog boots are adorable (he loves frogs) and the built in handles make pulling them on much easier than normal shoes.  He was pretty pleased with himself today…

It is slow going but so exciting to see him making strides at a far quicker pace than just six months ago.  His overall behavior has improved tremendously since August, his tantrums are far fewer and he is able to settle his self down in under 45 seconds most times. He has been doing so well that we went to eat in a restaurant last weekend, albeit a noisy truck stop instead of someplace “fancier”, and we all managed to eat our entire meal, with zero outbursts from the youngest member of our family.  He entertained himself with toys we brought along and while he didn’t remain seated the entire time, he did spend a lot more time in his seat than out.

Things are headed in the right direction and it feels good to share some positive news.  He has been metabolically stable for almost a year now, he is sleeping well and doing pretty well in school and I probably just jinxed it all to heck and back by typing that out.  Oh well, whatever happens we will roll with it.  There are some lingering questions about an issue with his liver and we hope that is figured out soon, and I am still waiting on the lab results from an appointment yesterday in DC, but overall Corrigan is solid and it pleases me to no end to share it here with you.

4 thoughts on “Therapy Time.

  1. Poor little guy. Life has dealt him so many tough breaks — except for two: his mommy and his daddy. There, God gave him the best.

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  2. Thank you for your blog!, My Daughter Aimee is 7 and has Citrullinemia! Its nice to see the other stories out there and not feel so alone, There is no one in my area with citrullinemia that I know of so it has been a little isolated with people not understanding what it is… Your little guy is adorable!!

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    • Hi Kelly! Thanks for your comment! I don’t know where you are geographically, but the internet sure can make the miles disappear! I’d love to learn more about Aimee, you have a few more years experience on me and you can teach me a thing or two! If you are on Facebook, there is a private group that I would love to share with you, we have 132 UCD families on there, many living with Citrullinemia. Also, if you are in contact with the NUCDF, there is a wonderful group ran by the Foundation called REACH UCD and there are HUNDREDS of families on there as well. It is private and secure there too. I hate that you are feeling a little isolated, I totally understand that a disease this rare can leave you feeling that way! Feel free to email me at mindy411@hotmail.com any time at all!

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