Happy Holidays from the Krajewski Family!!!
Gosh, it has been a super long time since I’ve updated. I often post pics and small updates on facebook, but I’m horrible at getting to this site. It’s been pretty busy in our house, as usual…. Here’s an update on the whole family as 2012 comes to an end.
Ally is overall doing well. At the end of November, she began homebound school with a teacher one hour a day. We really like her new teacher, but with help from lawyers (pro-bono), we are advocating strongly to find a better, safe school for her in combination with homebound (for 2 or more hours a day including speech and occupational therapy when she can’t attend). Ally has not attended any school this year due to complications with her last school and also training new nurses over the last couple of months (whom we really like). We hope to have some new school changes soon and I’m so happy to have help with this crazy school process. It’s been sad not having a school for Ally to make new special friends and celebrate holidays and special events with (also learn and experience school fun with peers). We do stay busy though with events through Starlight Midwest Foundation and attended a xmas party with their organization and Hope’s Friends (our palliative care program). Ally will most likely have to do surgery again in January (with a couple days hospital stay) to have her port revised. Her body has formed a fibrin sheath over it and we cannot do blood draws from it. She is due for her next bone infusion in February which will require many pre and post labs and use of the port too. I will be talking to the surgeon again soon and finalizing plans and our options. Ally remains a happy girl despite all of her challenges with SMA. She is a smart girl and getting better at her communication using low tech pictures, yes/no expressions with her eyes, and is starting to use two switches to operate her computer since the eye gaze on it has been inconsistent. We are waiting for her power wheelchair complete approval since there was some mixups with pricing and insurance reimbursements, but it will be AWESOME for her to move around herself. Ally will turn SEVEN on February 2nd and I hope to have a big party for her with family and friends. We need to get together more often for happy times!
Melissa is 8.5 years old, in third grade at Bridge School, and doing very well. She has really gotten into reading chapter books and has read several books in the Poison Apple Series (haunted houses, werewolves and vampires). She misses cheerleading since the season is over, but still dances and cheers around the house. She is also into crafts, bracelet making and even knitting (with Grandma Carol’s help). She definitely has a lot of energy and spunk. She can be very helpful when she wants to and also super caring toward Ally. She is growing up a bit too fast, but it’s tricky with our complicated life. I am very glad that she has had a TON of enthusiasm for our adopted “Elf on the Shelf”, Chippey. She rushes out of bed to find him each morning and has been awaiting Santa’s visit.
Kristyn, who turned 16 in July, continues to do extremely well in her junior year at Lane Tech College Prep. She is taking honors and AP classes and is very independent in her studies. She LOVES driving and has been fortunate to borrow her dad and Grandma Carol’s cars. Kristyn also continues to be a cheerleader for Lane. Her team cheers for football, basketball and will begin their competition season in January. She has been dating her boyfriend, Nick for almost a year and a half and he’s a very nice young man. We even play board games together once in awhile, which is nice to do with teenagers. She babysits some and would be interested in additional kiddos who live nearby us. She hopes to get a part-time job, but stays pretty busy with cheer, her studies and her friends, so babysitting is good too.
Billy and I continue to do the best we can as a team. As I have said many times, I’m lucky to have such a supportive husband that helps with ALL of our girls and around the house too, in addition to working full time at Service Decorating. We are fortunate that he has a good, supportive job. I’ve been doing some Pampered Chef shows a little here and there and hope to get more active with it to support our income, maybe tutor too. I also stay busy training and assisting our nurses for Ally and all the medical and school phone calls and appointments. I love communicating online a ton with other SMA families to learn about the best ways to care for Ally and find some strength in trying to assist newly diagnosed families. There are many of us in the Chicago area and then a whole SMA Family I feel connected with through similar lives around and out of the country. I’ve also become involved with other IL families on the same nursing waiver program we use through DSCC (Division of Specialized Care for Children) as we advocate to stop cuts in our kids programs and help each other through tough times.
That’s a pretty in depth update on our family for those that might be looking at Ally’s blog for the first time. I listed the link on our holiday cards that are going out a little late, but I actually was glad to do this year. I love seeing and hearing from family and friends. Please don’t be strangers. We love having healthy visitors and getting together with family and friends. We also like hearing how things are going in your lives. Hope everyone has a great holiday season and a happy and healthy New Year!!!!
Here are links to our latest photo albums on picasa. Click on the album covers to see ALL the pics and even some short videos…
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| 2012-12 December |
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| 2012-11 November |
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Tina and the Krajewski Family
Angel Ally Blog - SMA Type 1 