Happy Holiday! What a great time of the year! We have been trying hard to be careful but also have had the opportunity to spend time with some family and friends. I have added some random photos from Nov. and Dec. so far. so you can see. Sorry I haven’t done the best job taking pictures but there is a few. Jocelyn has been doing well. There is not much new to write about we are just hanging out indoors for now. Have a very Merry CHRISTmas!!!!!! We’ll write again soon.
Hope everyone had a Happy Halloween! We sure did. Jocelyn has been doing well. We were able to go to the pumpkin patch a couple weekends ago, carve pumpkins, and go trunk or treating. This has been a huge treat for her as we are always so careful this time of the year that we really don’t get to go to very many places. We have had fun. I have added some new pictures. In case you can’t tell we included Jocelyn’s stroller in her costume this year. She was a present. We wrapped cardboard big enough to go around the stroller then made a big bow for her to hold. Attached to the bow was a tag that said To: The Lee’s From: God. It seemed to be a big hit. She loved being out and seeing lots of other people. It often makes you feel bad that we keep her away this time of the year but the risk is way to big. Along with our Halloween festivities we have also been to the doctors a few times. Luckily not for sickness. We have been trying to get a TLSO made and are having a time. We found someone who can use a machine to scan Jocelyn’s back to get the dimensions instead of making a cast mold which would be very stressful for her. The only thing is she is the first SMA patient he has had so we are trying to contact a orthotist in Wisconsin who has done several but haven’t gotten in touch yet. And now we learned they need more pictures so we have to go back. Which is not fun for Jocelyn. Also we have gone to the pediatrician for the flu, RSV, and the H1N1 shot. I don’t like the idea of putting so much into her system but it isn’t worth the possibility for her getting the illness and someone saying this wouldn’t be so bad if she would have gotten the shots. I have to go with there advice on this one. Not sure yet how the holidays will go…… We are waiting until it gets a little closer but are hoping that we will get to spend time with friends and family. I will update again soon. Hope you enjoy the new pictures.
Ooops! Just realized as the pictures were downloading that I added them all to the October. I was going to do a separate category for the zoo. But We got to go to the zoo. We have been trying for a while now to go and it just kept not working out so kind of last minute we just decided to go. We had a great time. We decided to let Jocelyn nap on the way so that she would be well rested when we got there. Giving us the afternoon to walk around. Ha Ha! So I thought that was a good idea. Except someone else had other plans. : ) Miss Jocelyn would just lay there calling for us. She now can say mama and dad. It is adorable that she can do it but we really wanted her to nap. Guess she was a little excited to get the zoo. If you would ignore her, which was hard to do as we are all sitting in the same car, she would get louder since she was on bipap. This would make us laugh then it would all start over. We look tell her to close her eyes and take a nap. She closes them for a couple of seconds, peaks to see if you are still looking then begins calling us again. Finally about 30 minutes before we got there she fell asleep so we sat in the parking lot for another 30 so she would at least have an hour nap before we took her to walk around. She seemed to really enjoy looking at all the animals. We had an extra special treat afterward. On our way home we stopped for dinner and were joined by Shane’s sister, Brother, sister-in-law, and nephews. Sorry Katelyn that we missed you. We were so glad to get to spend some time visiting with them. We really miss them and need to do a much better job visiting and staying in touch. Time goes by way to fast. We love you, thank you!
Finally I am putting up some new pictures. There isn’t too many but there is a few for those that have been asking. Sorry for the delay. And if you look in the look what I can do I have posted the video of the Misses in her new chair. She really is doing great! We had to readjust some things and she is only comfortable when turned to the side some but if that is what makes her happy for now then so be it. She doesn’t have her TLSO yet or a hensigner collar both of which will help her to tolerate sitting in a more upright position facing forward more. We will readjust when the time comes but for now she is loving the chair and will practice in it for 45 minutes or so if you will let her. You ask if she is all done and she will shake her head huh un. So we continue Hope everyone is doing well.
I wanted to take the time to say THANK YOU! We are so very blessed to have such great friends and family! The golf tournament went very well. Thanks to all those that were able to participate and contributed. We had a great time and Jocelyn had a wonderful day! She was a little disappointed when I brought her back from her golf cart ride. I think she may could have rode on there all day Some more great news…….. We got it….. the wheelchair is here!!!!! So far she is doing o.k in it. We do not have a back brace that fits her right now so I think that will make a difference but for now she is doing well for short periods at a time. I think it must be something she will have to get used to. And as soon as i figure out the position that is going to be best for her. We will take some picture of her in it and post them this weekend. She was showing off for Daddy last night in it. Real cute. She loved to try to chase him. I promise I will update again sooner.
I can’t believe how long it has been since I updated. Sorry! We have just been having lots of fun and keeping busy while the weather still allows us to. We have been able to spend time with lots of family and friends that we don’t get to see very often. We were very sad to have to miss traveling to FL for cousin Kelly’s wedding but soooo excited that things worked out and we were able to travel to PA for the reception! It was so great to see everyone and we are so thankful for family being so understanding and inviting Jocelyn to come hang out with the adults for the evening. She did a great job and just loved all the attention and watching everyone dance. It is very hard to say good-bye when spending time with family and friends. It isn’t very often we get to visit with each other. We miss all of you sooooo much! We truly cherish every minute we get to spend time with you! We also have had the wonderful opportunity of meeting another SMA family. It has truly been a blessing. What a wonderful family they are. We were able to attend a golf tournament they put on for Mackinley! What a huge success!!!! He to is such a little trooper too. So adorable! So please keep this family in your prayers too. We together look forward to the day we get the news that the cure is finally here! Speaking of there is a website called unite for the cure http://uniteforthecure.com/ . A family has spoken with one of the doctors involved in the stem cell research and we have learned how close they are. Unfortunately funding is what is holding up the process. You can read more about it at the website but please if you feel led to help contribute we would greatly appreciate. We pray each day for a cure and the reality is it is close. To continue we were also able to return to Myrtle Beach for a quick weekend. It was lots of fun! Although we are ending our traveling here for a bit we are still enjoying being home. We have gone on boat rides, walks, played outside, to the beach. We are taking advantage of the beautiful weather while it lasts. We would like to remind everyone that we are doing a golf tournament in honor of Jocelyn on the 19th of Sept. The info is on the home page of this website. Please if you are able to play please take the time to register ahead of time. It helps us as we are trying to get a head count for how many we will have and for food. Please spread the word. Thank you soooo much! Sorry for such a long email especially since it doesn’t let me separate it into paragraphs for some reason but at least I finally got on here with and update! : ) We love ya!