Shortly after Alli was born, Jason and I joined the Down Syndrome Association of Atlanta. Ar the time I felt it was like the Golden Key National Honors Society or Beta Alpha Psi, just something you did if you qualified for it. I never imagined how invaluable this decision would become. From the DSAA we learned about DADS, which, as you might guess, is a group of Dads that have children with Down Syndrome. They meet once a month (over beers, of course) to discuss what is going on with their children, share pertinent information about what is going on in the down syndrome community (both local and at large), plan fundraisers, and ultimately share advice and resources. I mentioned to Jason that he might think about going and was pleasantly surprised when he agreed to check it out. Thanks to his involvement in this group, we learned about infantile spasms from an email chain. Ultimately that helped us to obtain Alli's initial diagnosis and seek immediate treatment.
The DSAA also puts out a regular newsletter. When Alli was in the hospital back in January I happened to be reading through the articles and came across a narrative written by another DSAA member whose daughter had suffered through infantile spasms and had congenital heart defects. She described her daughter as 'medically fragile' and was speaking to the lack of support resources within the down syndrome community for families of medically fragile children with down syndrome. I remember debating with my mom about whether Alli was 'medically fragile' enough for me to reach out to this mother. I felt like maybe we had caught everything just in the nick of time enough with Alli to avoid status as 'medically fragile.' Once Alli was readmitted to the hospital again in February with the relapse of infantile spasms I decided that she had at that point met the quota to be considered 'medically fragile' and indeed reached out to this mother. What a wonderful support she has been! She understands what it is like to go through this. She shares resources. She checks in on me to see how things are going. She is truly an angel in disguise. The week I met her she organized a dinner at her home for Jason, me and Alli to meet two other families of children with DS and IS and we sat and talked over pizza about heart surgeons, neurologists, various courses of treatment, therapies, etc. It was amazing and something I will be forever grateful for.
I am hopeful that at some point, in the somewhat near future, we will be able to enjoy other aspects of the DSAA. They host wonderful social and educational events for families. I am also hopeful that I will have the courage, as this other mother did, to reach out to other families that have medically fragile children and help them see the light at the end of a very dark tunnel.
Speaking of light in the tunnel...we are seeing some hopefully good results from the vigabatrin. This week we have noticed Alli starting to track objects and faces again on a pretty consistent basis. She has periods of occasional vocalization. AND it appears as though she is trying to smile again. Today, Megan told me she rolled from her back to her side without any assistance. All of these are indicators that things should be moving in the right direction. Please pray that we stay on this path and are able to completely eliminate these seizures from ever coming back. We are still witnessing occasional mild jerks, but they are becoming more mild and infrequent.
In other good news, Alli was able to complete her MRI yesterday. She made it through anesthesia with flying colors and had 3 different scans. She had a scan of her brain and orbits, a cardiac scan, and a scan of her brain and orbits with contrast. We should hopefully have the results from the neurologist at our appointment tomorrow and from the cardiologist at our appointment in a couple of weeks. Thank you for all of the prayers that were said for her yesterday.
Samantha continues to do well. She is sad that her "nanny" (grandma) is gone, but looks forward to another upcoming visit soon! She is starting to talk in sentences now, as opposed to one word phrases. Her latest is "I hold you." Which means she wants me to pick her up. She seems to take what we say to her and apply it to the correct situation. We are trying to help her understand the difference between I, you, and me.
Until next time...
At the risk of sounding like the adorable girl in the beloved YouTube, "Jessica's Daily Affirmation" (http://www.youtube.com/watch?v=qR3rK0kZFkg), let me just say that I absolutely love the experience of spending time in "my Atlanta home." (Don't let this frighten you, Jason). I'm afforded the most gracious accommodations (private living space in their lower level guest quarters...with a separate entrance...widescreen T.V...wet bar...and a full bath). I'm also allowed basic free reign of the rest of the home, including both refrigerators, the T.V. remote ("Thank you, Jason"), and general access to any 'n all general cleaning, laundering, and cooking supplies. But, my favorite thing about their guest quarters are the visitations from my little girls and the dog I love...and never had. Okay. I hate that he sheds so much. But, I love his unfailing companionship...and can understand why Jason loves him so much; he never argues or debates. "Thank you, Snickers."
ReplyDeleteMegan writes, referring to Samantha, "She is starting to talk in sentences now, as opposed to one word phrases. Her latest is 'I hold you.' Which means she wants me to pick her up. She seems to take what we say to her and apply it to the correct situation. We are trying to help her understand the difference between I, you, and me." Oh, boy...I wonder if Megan has really given full consideration to the fact that her (totally impartial) Mother is a Speech and Language Pathologist. I could have written "former" Speech and Language Pathologist, but let's face it; having these wonderful granddaughters has most certainly kept me out of full retirement from the profession I loved for so many years. "One word phrases?!" Samantha has been experiencing a burst of language expression that has stretched beyond simple phrases to complete sentences. She had possessives during my Christmas visit there, is using some "wh" questions, and has stretched most verbalizations to 3-5 word sentences that frequently include prepositions and conjunctions. I know basic readers really don't want or need to read a complete speech and language eval, but, trust me; Megan and Jason are already falling into the category of parents who, just months ago, were wondering, "how long before she talks clearer, and in sentences?" ...and now, have joined the parents who are desperately trying to get a word in edgewise, and have to gently remind her, "Mommy's turn to talk." Years ago, Moms (and Dads) weren't so polite. Remember? Do we work on speech and language? All the time...it's my greatest love while I'm there and when I step away from "the domestics." Well, that and holding my sweet Alli. She truly "holds me" and teaches me all about what really matters in life...every time I visit there. As for the writer and originator of this blog, I stand in humble admiration of my Megan's strength, energy, and endless quest to serve her family and others on an ongoing basis. You'd think that someone who has experienced all that they have, might be too tired to entertain, to welcome people into their home for dinner, visits, drive thrus...but, not Megan and Jason. They encourage friends and family to stop by, to stay if they're en route somewhere. When you do, remember to turn on the hallway light in the lower level quarters at night, turn the furnace off, and enjoy all the love and amenities that come with. Trust me, you'll leave...feeling blessed.