The upcoming week is busy as usual, but I am excited that Liam's Gigi will be in town! Oh, how I have missed her and boy how Liam has grown since her last visit at Christmas!! They are going to have so much fun...I'm jealous that I have to work all week! Liam also gets a short visit with his Great UJ as well...Loving some family time!
We got together again with our nieces yesterday afternoon - they are just too fun and I know Liam just adores them! They keep him WELL entertained! We went to my sister-in-laws house this time. Dustin took Liam over early while I got to get my hair done =) Here is a cute pic of the girls with Liam I had to share...
Liam also has been standing up with our help...He is really getting the hang of it and LOVES when when pull him up!
I spent most of the morning Saturday compiling our medical notebook. Sounds fun, huh? Something I literally have had on my to-do list since....hmmm, last October??! Anyways, Liam is starting daycare in a week and I want to be sure all his info is in a nice binder for them....as it should be. I'm making two so we will have one here at the house also for an emergency. There is a great resource for creating one yourself that I found has nice forms you can type your info in print out for your notebook and then save to your computer so you can make changes easily. For anyone who is interested, here is the link http://www.medicalhomeinfo.org/for_families/care_notebook/care_notebook.aspx. I found this website to be very helpful. Although some of the forms are pretty general, for the most part they have sheets that cover all the basic medical info needed for others in case of an emergency. I am thinking about modifying some of the forms specifically for heart families and posting them to my blog for download.....which is another area I have been thinking a lot about lately....
In compiling my notebook yesterday and just in day to day life with Liam in general, I have had a feeling of frustration working through the medical world of his condition. It just seems the lack of guidance and counseling is hard to come by and not available like it should be. I always feel like I'm floundering through, trying to navigate his issues without a road map. We, the parents, are left to make connections and piece together our child's care. We must know what questions to ask or risk not receiving vital information. I am terrified of not getting it right....of missing some big important step, either because I wasn't told or failed to ask the right questions...
I guess what I am trying to say is, I am really seeing the value of becoming actively involved in my support groups, both online and locally. This is the one arena that is open 24/7 for advice, game plans, road maps and encouragement. I also think that as CHD support groups grow, awareness will as well. And with more awareness, comes more resources...and that benefits everyone. I really feel for the first time moms who are navigating this journey. I have been there...I'm still there, but in a much better place because of other's like myself who have come together to offer each other a piece of the puzzle. But if you are reading this blog and looking for a support group for anything related to your child, BabyCenter.com is a great resource for online support groups, for numerous specific topics. Yahoo groups also has some great support groups as well. And thank you for our Amazing Little Hearts support group for always working hard to provide support and fun family activities for us local CHD families. We have not been a big part of ALH yet, due to the limitations we have had with Liam, but we are hoping to be more actively involved! And last but not least, thank you to all my CHD blogging friends...you all are priceless to me and I am glad we get to share our journeys with each other!
I have been right where you are....floundering and it can be the worst feeling. However when you finally statr making those all important connections it does help to alleviate some of those feelings.
ReplyDeleteI too hope that someday more info will be out there for families.
Truer words were never spoken. It is up to us as parents to make sure our kids get the care that they need. Sadly, there are many gaps in the medical care/medical world that these kids fall through. I like to think I've become pretty good in managing my child's care...but when I step back to look how I got here, it's almost overwhelming. Looking back, our months in the hospital allowed me time to ask SO many questions and get to know every possible doctor and then hand pick the best (and most responsive) ones for our outpatient care. I realized I had (at least some) power over which nurses could care for my daughter. But no one tells you that at the hospital, there's no road map, no "10 easy steps to advocate for your daughter" and it takes time to learn and develop those relationships that I am now able to use when I need to get something done. It doesn't seem like the health care system will be changing anytime soon so I agree, it's up to Heart Families to help others!
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