Friday, October 18, 2013

10 months worth of updates in one post

Or, at least I will try.

I am not sure why I stopped writing in this blog.  I could provide many paragraphs on why life feels too busy to write it all down. But, that doesn't feel like an adequate excuse.  There are many parents of medically fragile kids who still take the time to write it all down.  That was something I,at one point felt was a priority--and for a time it felt less so.  To be frank, at times it is hard to write it ALL down.

Today it doesn't feel as hard. So, here is my attempt to try to catch up to where we are now.

2013 has been an interesting year.  In February we were able to go on Samantha's Make a Wish trip. As our girl likes everything princess (that is nature and NOT nurture!), and Mickey Mouse and crew, we picked Disney World and the Make a Wish Village (Give Kids the World).  I can't say enough great things about the village and the Make a Wish organization as a whole. We all had such an amazing time. Our every need was accounted for.  And for a sensory sensitive kid like Samantha, the village was a great place to hang out.  She had a wonderful time in the actual village. The parks were a little tougher to navigate. Not the fault of the parks, just the impact of a LOT of people trying to have fun in one space. Samantha doesn't really care for crowds too much. Although, she was able to enjoy a few of the rides and did manage to have a good time anyway.

Here is a pic of the three of us at Epcot:

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Sammy after getting off a roller coaster that she loved:

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After settling in back home, unfortunately, we had a couple of hospital stays. In late March Samantha somehow got the flu (despite getting a flu shot), and we needed to be inpatient for 4-5 days in order to assist her with her hydration via IV fluids.  Then, just a couple of months later, a cold (positive for rhinovirus) also brought us back to CHOP for another stay just to keep her hydrated.

The summer flew by quickly. We were able to get away for a trip to Avalon with Val's entire family. It was a great house with an elevator and a pool and Samantha had a great time with her cousins. Later in the Summer we were able to take another trip to Atlantic City with my mother and again, and an elevator, pool, and some cousins really allowed Samantha to have a great time.   We are so very lucky to have an amazing family who help us to help Samantha have as much fun as she can.

As far as medical issues, Samantha continues to be medically stable.  Her personality is amazing and she manages to handle most medical things with a smile. Hospital stays are a bit tough on her (understatement of the year--she HATES being inpatient), but I can't say I blame her.  Cognitively she is doing well. However, her motor skills continue to slowly decline. She is not able to walk any longer, and recently has been struggling with her hand control.  At times it seems to frustrate her, but she is able to communicate her needs and we assist her as best we can.  Her constant smile helps us all along.

For conservation of energy, we hook her up to her ventilator at night (and one hour during the day), but her O2 and CO2 levels are always fine.  Samantha continues to take her experimental drug EPI-743.  We absolutely believe it is helping to slow the progression of her disease (And we are so very grateful for that!).  However, it is not the complete cure we were hoping it would be.

Due to our fear of germs and Sam's general clingyness, we decided to continue her home services for another year. So, rather than go to kindergarten, she receives Speech, PT, OT and Special Ed Instruction in the home. Between her therapists, nursing, and home health care company, it feels like our condo has a revolving door on it! She enjoys the visitors though, and each morning I need to give her a run down on "who is coming today".  In addition to her therapies, and other appointments, we also try to get out as much as we can.  Sammy's current favorite trips out include the park, the mall (Cherry Hill to get Lorenzo's pizza, and Claire's to get another fabulous bow to add to her collection), and her absolute favorite store-- Five Below.  The girl loves to shop for all things girly, not sure where she picked that up from. (Not being sarcastic at all, really, who taught her this??? ;))

Recently, we added a few things to our equipment list.  Samantha received a new wheelchair a couple of months ago.  Sammy picked hot pink of course. The chair accidentally came with a teal backrest but as Samantha loved it, we kept it for her. She also received a gait trainer just a couple of weeks ago--the Mustang. She seems comfortable in it and we hope she will develop her leg muscles while using it.  And, finally, we purchased an accessible van to go along with the new wheelchair.  It has made our lives much easier. And, I know Samantha enjoys being wheeled into the van. As she enjoys her new chair so much and seems so comfortable in it--it really makes traveling with her much easier.

Here is Sammy at the seating clinic getting her new chair a couple of months ago....

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Speaking of traveling...

This past week we went to visit Sam's neuro in Akron, Dr. C.  It was a mostly uneventful visit. We noted that Sam's weight has dropped a little.  In the past, we had cut her formula through her g-tube as she still eats some by mouth. I do believe her eating has dropped some.  She is struggling more with chewing and swallowing in general. So, less calories via food would explain the weight loss.  Plus, Dr. C feels that as her dystonia increases (actual movements while sitting in her chair), her calorie needs may be increasing as well. Sam is still in a perfectly acceptable weight range, but we are increasing her feeds by one bolus a day and see how she does with that.  We will be following up with her nutritionist in November to make sure we are on track.  In relation to her hands being tight, Dr. C did feel that baclofen (sp?) might assist with the tightness. However, he felt that the dose she would need to actually see improvement would cause drowsiness and thus not really be worth it. We agree with his opinion so won't be starting it anytime soon. Obviously if things change and get worse, we can revisit that option at a later time.  Finally, as Sammy still struggles with bowel movements, he felt we could add Miralax back into her regimen to see if that helps.  We will go back to see him in another 6 months or so.

Upcoming appointments include a yearly follow up with Cardiology, a pulmonary follow up, and a GI follow up.

In September we participated in the UMDF's Walkathon. Team Samantha did even better than last year, raising well over 7,000 dollars! We surpassed our goal by over $2,000!  Val and I are so grateful for all of the love, support and caring we receive each day of the year.  The support at the walk was just  above and beyond what we could hope for.  Without funds for research, a cure will not be possible.  So thank you times 1000 from the bottom of our hearts to everyone who participated, donated, or even just thought of us that day. We appreciate every one of you.

I hope this update was somewhat coherent--I tried my best.  And, hopefully I will be able to write again before another 10 months goes by.  :)

Until next time,