The Jocelyn Paige Lee Foundation Forum

Journal of Baby Jocelyn's Treatments and Progress

Update
Posted: 08/26/2010 - 03:17 pm
	Again it has been a while...... So we have enjoyed the summer so far. We have had lots of company and have been able to go the beach, the lake, and out with Ryan and Geraldine on their boat a few times (which Jocelyn loves). We are really greatful for the time we have been able to spend outside as it has been sooooo hot around here. Jocelyn is doing great. She is such a blessing to us. I can't express how much we love this little girl. It is amazing. She has such an awesome personality. So sweet and kind. She has those 3yr. old "tantrums" weill for her she cries or pouts when she doesn't get what she wants. We all know that is rare but still I can't always give in. If you haven't found them already yes it is true. I have finally emptied my camera. There are new pictures finally uploaded onto the site so please enjoy. We love you all and thanks for checking in.
Posted: 06/06/2010 - 09:20 am
	Hope everyone is doing well! We are enjoying the nice weather and finally getting out of the house. Just wanted to let you know that I have finally added some new pictures. And am still in the process of adding more so here they are. I know it has been forever. Better late then never huh! :P Jocelyn is doing well. She is enjoying spending time with some of her friends and being able to get out for walks. We hope to get to the beach and get in the pool here soon. It is definitely hot enough.
Posted: 05/07/2010 - 03:04 pm
	Sorry the computer is acting funny. I was trying to say that we also have some cute pictures of Jocelyn helping us to plant flowers, pick strawberries and of course hanging out with her puppies. I will put them up as soon as I can. Hope to update more often sorry for the delay. Thank you so much for checking in on us. We love you.
Posted: 05/07/2010 - 03:02 pm
	Wow! It's been a while. So I am going to stop apologizing and just let it be a surprise when I finally get to update. I don't seem to make it to the computer much. Things have been good around here we are finally getting out and about. We went up to DE for a wonderful week with family and friends back in April. We are so proud of Uncle Colin as we were able to be a part of his graduation from the police academy. And a HUGE THANK YOU to all that made this years benifit possible. It was a great success. It was great to see so many family and freinds. We love you all and again thank you sooooo much! Jocelyn had a great birthday! Hard to believe she is already 3. Such an amazing little girl we are so very proud of her. Instead of a big cookout this year we decided to take her to the zoo with some freinds. She had a good time. I think here favorite for the day were the baboons that kept trying to climb the window and wrestle and the elephants who were playing in the water. Jocelyn was also able to make cupcakes for here freinds and she did a wonderful job. They were delicious. Both Jocelyn's laptop and our desktop crashed in the same week a while ago so maybe I could partially blame that for the delay but if I can ever figure out how to get this computer to allow me to log in and upload some new pictures I would be happy to share the pictures of our un. We also have some g
Posted: 01/31/2010 - 01:34 pm
	O.k. Here I am. All is o.k. I have no good excuse for such a delay in update. I can only say I have been slacking a bit. And I am sorry! But hey you will have lots to look at now. As for us....... We have been making the best of our hybirnation. :) Christmas was good. We enjoyed the time with our family and friends. We have been able to spend time with some really great friends, which has be lots of fun. Shane has had to travel a bit out of town here lately but we have been doing well. Jocelyn and I know that we have great friends and neighbor's near by if we needed them in an emergancy but so far saying our prayers and knowing we have Dr. Jesus here with us has gotten us through the days and nights without him. We are always excited to see him return safely to us. Jocelyn is always smiling ear to ear when you ask her "Who's that?" Our newest fun has been the recent snow. We were able to take Jocelyn sledding. We had so much fun. She had a blast. If you would stop she would give you her version of "again". You will have to take a look at the pictures becuase when I tell you how we did it some of you are gonna say "You did what" (Grandma's) But really we were careful and hey she liked it. Yes we used a swimming pool full of lots of warm blankets and tied it to the back of the four wheeler. :P I guess that is what happens when you cooped up in the house for so long. Your brain starts spinning for ideas to get out. Just two more months and we should be blessed with some more warm weather. I will try to be better about the updates, we just don't have much new going on this time of the year. Thanks for checking in.
Posted: 12/20/2009 - 02:09 pm
	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.
Posted: 11/01/2009 - 05:12 pm
	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 afterwards. 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 intouch. Time goes by way to fast. We love you, thank you!
Posted: 11/01/2009 - 05:00 pm
	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. Incase 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 possiblity 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.
Posted: 10/06/2009 - 03:43 pm
	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.
Posted: 09/25/2009 - 09:02 am
	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 disapointed 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.
Posted: 09/10/2009 - 02:00 pm
	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 cherrish 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 tournement 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. Unfortunetly 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 advatage 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 seperate it into paragraphs for some reason but at least I finally got on here with and update! : ) We love ya!
Posted: 07/26/2009 - 07:57 pm
	We are back! We had a wonderful time. Jocelyn had a great week. What a blessing!!!! We added some new pictures but unfortunately we ran out of memory on the camera so we were only able to take pictures at the begining of the week. Jocelyn went to the beach, pool, mini water park, aquarium, and dinner and a walk around barefoot landing. Poor thing isn't gonna know what to do when she is stuck back at the house with me. ;P We are so thankful that we were able to spend time with so many of our friends and family. Sorry for the short update but it is bed time. I just wanted to be sure I added a quick update with the new pictures. Love Ya!
Posted: 07/13/2009 - 07:49 pm
	Well! We did it! We took our first trip in Jocelyn's new van. What a difference. She did great! God is good! It is such a blessing that you all have made this possible. We are so thankful to all. It was so much easier to do treatments and keep her comfortable as we traveled this time. Speaking of traveling. We had yet another great weekend. Mea and Shawn's wedding was beautiful. We had a good time. It was good to get to spend some time with them and to visit with Miss Ashlee. We have plans to head to Myrtle Beach to spend time with family and friends this coming weekend. We will get to stay for a week. It should be lots of fun!
Posted: 07/06/2009 - 08:53 pm
	BIG NEWS!!!! THANK YOU! We want to say how thankful we are to all of you for you help, support, contributions, donations, time, etc. We thank the Lord every day for all of you! You have helped more than you even realize. With your help we have finally been able to get Jocelyn a van! Amazing! What a blessing!!!!!! So it came today. Already adapted with a wheelchair lift. This should make traveling with Jocelyn so much easier. And just in time because we will be driving to PA this weekend for a wedding and then to Myrtle Beach next weekend. We took Jocelyn for a quick little ride in it tonight. She did very well. I think her favorite part is the huge TV. But hey what ever makes her happy! THANK YOU! Praise the Lord! We love you!
Posted: 07/06/2009 - 04:15 pm
	Another GREAT weekend! We had more company this past weekend and were able to all go out to the beach/pavilion here in the lake to watch the fireworks. We had a great time. Jocelyn just LOVES being around other children. She truly seems to enjoy her friends. We added some new pictures. The girls were so good with her.
Posted: 06/30/2009 - 12:09 pm
	We had and AWESOME weekend! Very dear friends of ours, the Stum Family, came to visit!!!!!!! We had such a great time and are soooo sad they are gone. We will miss you! We took all the kids to the lake, putt-putt, and hung around here some too. We posted some pictures :) The time just goes by way to fast. But we are thankful that we had the opportunity to spend the time together. Although these times are so happy while they last it brings tears to my eyes when I realizse how far we are from so many loved ones. It is so hard to see how grown these babiess are and we have missed seeing them grow. Please enjoy the new pictures and look for more to come soon. We have a very busy month. We will have more company this weekend. Then a trip to PA and a trip to Myrtle Beach! We are looking forward to each weekend and just pray for good health, safe travels for all, and happy times! Love to all!
Posted: 06/18/2009 - 04:50 pm
	Quick little update! We haven't been to busy we just keep getting rained on :( But as you can see we finally got a chance to go outside and play on or finished playground. Thanks again to all of you that help make that possible. Such a big birthday gift for a little girl. :) We love it! As for anything new. Just the norm. Hopefully now that the sun is comming back out we can make it to the pool and the beach more. We will have to take lots of pictures to make up for all the time I have made you all wait for these. We should have lots of company this summer, we are very excited. If you get a chance check out the Look what I can do section under photos. We were able to get Jocelyn to blow bubbles in a cup of water. She was tickled that she could do it. Very cute! We pray for safe travels for all those that are attending the SMA conference this weekend. We wish we could be there to meet and learn with you all but it just didn't work out this year. Maybe next year. We look forward to hearing all about it.
Posted: 06/02/2009 - 04:39 pm
	WOW! AMAZING! We had a wonderful time in DE. The benifit was GREAT! Thanks to all that helped to make it such a success. Jocelyn truly enjoyed all of your company. She did very well. There aren't words to say how thankful we are to all of you. We just pray that God will bless you as he has us. It was great to see so many of you that we don't get to see often. I am sorry to those we were unable to see. We look forward to seeing everyone at the benifit because it really hard to visit everyone seperate in such a short time. There are LOTS of pictures of the event. Uncle Derek is collecting and will put them all up at once. Please enjoy. We will write again soon. We have returned home safe and sound and somehow skipped spring??????? It is 90 something here. Hmmmm.... But hope to have a fun filled healthy summer. We love you all!
Posted: 05/22/2009 - 03:34 pm
	Just wanted to give a little update for those that have been checking in to see how the Misses is doing. She actually is begining to feel better. We are starting to see that smile and hear her little voice again. It is so sad to see her feeling so miserable. She has had a very long week. Still a few desats (oxygen is dropping) but we have been able to get it to come up. She is such a trooper. It seems as though she is over the cold for the most part and now it is more about getting her back to her norm. Thank you for all the thoughts and prayers as we were fighting this illness. Hope to see some of you real soon.
Posted: 05/17/2009 - 05:37 pm
	So I have been waiting to update so I can add pictures. Just haven't gotten a chance to get the pictures off the camera. I will here soon though sorry. I do want to fill you in on what we have been up to. Thanks to all of you Jocelyn now has an awesome new playground. Jocelyn loves her swing. We are finally getting to go on some walks and get out of the house. Just staying close by for now though. We love to walk down to the lake and watch the puppies play in the water. Jocelyn has enjoyed playing in the sand with her friend Jaeys down by the water. We have had some really beautiful days! That is when it is not raining ;) Mother's day was great! What a special day! We took Jocelyn to church and had her dedicated that morning. How bout we have no pictures of this special event. :( Sorry! Had the camera in the stroller but they called all three of us to the front and I didn't get a chance to ask someone to take a picture. Oooops! Last weekend we took Jocelyn to pick strawberries. She enjoyed watching all the children out in the field. And Daddy who got to do most of the picking. Good Job Daddy! They were yummy! Jocelyn did get to lay in the middle of the field and pick a few herself. Very cute! somehow I came across a little bug. Since Mon. or Tues. of last week I have had a little runny/stuffy nose. I did start with a sore throat too. I didn't feel bad the whole time and one may say maybe "allergies" but unfortunately not the case. So as hard as I tried the little misses still caught it. We noticed it Friday night as she began with extra secretions and continued with stuff in her nose and you can just tell she is feeling crummy. We are trying hard to treat this from home. Of course being that it is the weekend we did not get to see a doctor. I did talk to the on call pediatrician. He agreed that it is most likely the cold that I had. :( We are hoping to treat her here. We are praying that it wont turn into anything else. She has had a rough weekend consisting of congestion and fever. She is a trooper. Although she is not enjoying the extra treatments we are getting through them. Most likely we will have her doctor check her out to make sure it isn't anything else and maybe????? an antibiotic to make sure this congestion doesn't turn into a pnemonia. PLEASE pray for her quick recovery and that it may be here at home.
Posted: 04/20/2009 - 11:16 am
	Hmmm.... Wow.... I don't know where to begin! We are truly blessed! God is good! We have been blessed with not only this amazing little girl but such wonderful family and friends. We pray that each of you will be blessed as we have. The feelings of appreciation towards all of you are to much to even explain. We are so greatful for everyone. You have all touched our lives in so many ways! Thank you to all that were able to join us to celebrate Jocelyn's Birthday! It was great to see everyone. Thank you for the generous gifts and the time you were able to spend with us. We had a wonderful time. We will be sure to post pictures of Jocelyn swinging in new swing on the playground that you have helped us to get. Thank you! For those who don't know we took Jocelyn to the circus on Sunday. It was such a great experience. She is such a trooper and did a wonderful job. It was the Cole Brothers circus. And they treated us like royalty. We had lots of fun. You will have to check out some of the pictures. Jocelyn got to ride on an elephant and a pony. ;) We had such a great weekend! Thank you to all those that made it possible. We love you!
Posted: 04/12/2009 - 12:57 pm
	Happy Easter to everyone! We hope you are enjoying this wonderful weekend as much as we are. We are sad to have not been able to spend the time with our family but are thankful for the beautiful weather and the time we have been able to spend with each other. We are slowly comming out of hiding. :) We were able to enjoy both Friday and Saturday working in the yard. Jocelyn enjoyed helping and watching from her wagon. She did such a great job being outside most of the day. She loves it out there. Also we began this glorious day with the sunrise service at our church. We were very excited to be able to go back. It has been a while. We made the decision not to go to church during the cold and flu season. It was a sad decision for us but as we have said to many of our friends and family this season "better to be safe then sorry" It was great to go back! After church we brought Jocelyn home to hunt for Easter eggs. She was sooo cute. Just giggling away. We have several little short video clips on here trying to capture her excitement. She just loves it. I think she could have searched for eggs all day. As for the the basket. I believe her favorite thing was the slime. Yes, cold, wet, ewy, gooey, yup our baby loves it. And water I think she would play in water for hours at a time. We will be updating more often now that the weather is getting wamer. We hope to have a fun filled spring/summer with lots of new experiences for our baby girl. Next on the list is the birthday! It is amazing how fast the time goes. It is hard to believe Jocelyn will be two years old!
Posted: 03/31/2009 - 08:26 pm
	Just wanted to give a little update. Jocelyn is doing well. We had a long weekend for some reason she has been waking throughout the night crying and has been kind of sensitive???? But she seems to be doing fine now. We were praying hard she wasn't coming down with something. She had a good day today! We were even able to sit outside for a little while and she loves that! Must have been teeth maybe?????? I don't see new but I have not figured out anything else. Isn't that what you blame everything on if you don't know? Teeth? :) We are working on planning a little get together for Jocelyn's 2nd birthday! Wahoo! 2 years old! Such a big girl! Just a little cookout thing at the pavilion here in the lake. Don't worry I will post pictures. We hope everyone is doing well and hopefully soon enough this journal will get more ineresting since soon it will be about all the fun we are having out of the house :)We are looking forward to visiting friends and family! Lots of love from the Lee house. We miss ya!
Posted: 03/15/2009 - 06:36 pm
	Alright..... bad mama! It has been a while. I know Sorry! We really haven't been doing to much. Still waiting for warm weather. :) We have gotten a few nice days so there are few new pictures of us outside in the wagon. Jocelyn loves to be pulled in her wagon. She was really cute. We would call Nala (one of our dogs) over to us and make her sit. We would say ready set go and try to race Nala. Jocelyn would giggle. It was very cute! Also we have a new peice of equipment to try out. We now have a stander. As I am learning your bones become very fragile when you are not barring any weight. So we hope to help this a bit with the stander. We are unable to put her in a complete standing postion but we incline her a good bit. She seems to be doing well with this. Hope everyone is doing well. We look forward to visiting with everyone once the warm weather is back. We miss and love you all!
Posted: 02/10/2009 - 04:17 pm
	Hello everyone! Things are going well. Jocelyn is doing good. We are really enjoying this nice weather. We have gotten to go for walks again! We have walked the puppies up to the lake to play! So much fun. This fresh air great!!!!We are really enjoying being able to get out of the house a bit. We have been spoiled with the weather and just in time. It was getting old being stuck inside. Come on Spring!!!!!! We had a very exciting morning today. We had some visitors....... Carolina Mobility brought us a power wheel chair to check out. Jocelyn did a great job! We are definitely ready to get her one. I added some of the video on here so you can see how well she did. It was fun!
Posted: 02/04/2009 - 05:33 pm
	Quick little update...... Not much new is happening around here. We have had a couple little "episodes" where her numbers drop but we are able to get them right back up. I guess maybe extra secretions from teething, unless it is the crazy weather that is warm cold warm cold. But other than that she is doing well. Jocelyn enjoys playing with all of her new toys. She likes painting and coloring. We are still working on gripping the the marker though. She will make a few lines then drop it. We are getting to explore options with a power wheel chair next Tues. so that should be interesting. I will update then and let you know how she does. Hope everyone is well. We love you!
Posted: 01/19/2009 - 06:02 am
	Jocelyn has been doing so well. We decided to come down to Myrtle Beach to see Shane's dad who we haven't seen in a while and Shane's neice also who will be here and we have not seen her and her family in almost 3 years. She and her family are being restationed and will be 12+ hours away. Overall has been a great visit. It was very good to see everyone. It is amaizing how the time goes by so fast. We had ourselves quite a scare yesterday. As I went to lay Jocelyn down for a nap..... She had finished eating about a 1/2hr. to 45 min. prior, she was very tired, but junky... I coughed her to clear her airway before putting her on bipap. It seemed to make her more junky and from being so tired she was then very upset. After giving her several coughs we noticed that she still seemed to have something blocking her airway. She then spit up which is very unusual, and her oxygen levels continued to drop. We continued with coughs and at some point had to switch back and forth between that and the amboo bag. It was very scarry. Her oxygen just didn't seem to want to come up. We stayed below and around 50 for a while. Finally we called EMS. Of course not many are familiar with SMA. The guys that came to help were very nice and helpful. They were very understanding and willing to except that we didn't want to blast her with oxygen, we were only going to use it if absolutely necessary. You see we are pretty positive it was a mucus plug and it was just hard to get out. Of course her being full from recently eating and very tired didn't help. So we got her numbers back into the low 90's and they suggest we bring her to the hospital and let them check her out. We figured it may not be a bad idea since it felt like she had low oxygen for a long time. Time wise I really can't recall exactly. I do know it always feels so much longer than it is though when we do have little episodes. But this probably was close to 20 minutes or more that we had been trying to get it up. Her oxygen would come up then go down, up then down. Aggghhh... But we did get it up. So not knowing where I was they asked me which hospital. Hmmmm...... I didn't know. I just said they must have pediatrics. So we went to Grandstrand???? So needless to say they may have some type of pediatrics maybe a floor or just the ped. that was on sight but when I walked in the door I knew by the look on the nurses face that this was not what I expected. Knowing what I know now we may could have just put her on bibap at the house and maybe had the EMS there incase she went back down. She really just needed a nap. Especially after all this. So anyway now we sit at this hospital with a staff that has heard of SMA. I was a little worried at first. But I have to say thank you Lord! He was right there with us and by Jocelyn's side the whole time. It is a good thing that I have learned that it is not worth getting upset when they don't have what you need or are not really equiped to handle the situation. The doctor that worked with use was wonderful. They took and x-ray, did the prick of the foot to check levels and let us put her on bipap and let her take a little nap. I felt very stongly that she needed to sleep on bipap. He was o.k with that. They came back to say that the x-ray looked clear, it was taken while she was on bipap but he said he was pretty confident that she was o.k. The blood test all came back fine except for the white blood cell count. Which was at the time 3x's elevated which does indicate possible infection. Wierd.... no other signs..... he did say that the stress from what had happened can elevate it at first and that it could possibly not be and infection. Hmmmmm..... so we did agree to put her on an antibotic for now. I will get home and have her checked again to see if she needs the antibotic but we would rather be safe then sorry. We are so thankful that Dr. Tarboro let us hang out in that room and monitor Jocelyn. The other option would have been to transport her from there to Duke. I know they don't let me ride with and I don't think I could have handled that. How do you hand over your care for your child to strangers that have "heard" of SMA? They are "trained" to handle........ Not what I do on a daily basis. I would have been a nervous reck that something that would have been normal daily routine for me could have been a mess with us not being present. I was very nervous that we were going to have to discuss this option further. Thank God we didn't have to. Turned out their adult pulse ox thing was not giving and acurate read. What was originally saying 92-94 on their screen, while on bipap, turned out to be 97. When she woke up the plan was to observe, cough, and decide what was best for her. She woke up in a good mood. She was playing and the doctor asked what we thought. I would like to take her home is what I said. Thank God for such a kind, understanding doctor becuase he said that would be o.k if we truely felt that was best for her. He said we know her best. He contacted Duke throught the day. Before we left they wanted to do a blood culture to check for the infections but they were all o.k with letting us bring her home. We are so thankful. So far she has been o.k. We watched her closely last night and are heading home today. Please pray for safe travels with no unespected complications. It is about 31/2 to 4 hours to get home. I will keep you updated on how she is doing. Thank you!
Posted: 01/14/2009 - 06:34 pm
	Well hello to all of you! We hope everyone is having a great start to a new year! So far so good around here! We have just been keeping busy. Shanes has been busy at work, Jocelyn had to get back into the routine of therapy. She was able to get a little break over the holidays. Along with therapy she was fitted for new AFO's for her feet. We also had a visit from Karen our assissted technology person. That is always a great visit. She always has such great ideas. We are working with the computer as Jocelyn enjoys here computer games. She does pretty well with the switch. We have learned how to use the switch along with other activities such as reading and are learning how to use it for conversation too. As you can probably tell she is still not talking. She will make sounds but mostly with her mouth closed. She does try to "sing" to some of her favorite shows.(Absolutely adoarable) We say she grunts and hums I guess. But she still isn't even 2 yet. We are exploring ideas for ways to communicate. Not that we are giving up her ability to speak but we want to make sure she doesn't get frustrated as she will want to tell us something and can't. We are going to try some of the symbols from boardmaker to see how she does with that. But most of the communication boards are difficult for her to activate due the the amount of pressure needed when you push the buttons. Also we are looking at some eye gazing activities to see how she does with that. We will see how it goes. As for me....... I am good! I have to say I/we are often overwhelmed by the amazing generosity, love, and thoughtfullness of so many of our family,friends, and even people we barely or may not have even met. It is amazing. I don't even know where to begin or how I/we could even express how thankful we are to have so many wonderful people in our lives. We just pray that each and everyone of you will be blessed just as we have. We pray that one day we will have the opportunity to touch others lives like you have ours. We would would jump at the chance to help someone to feel as you have made us feel.I don't know that there are words to express how much it means to us. Love to you all!!!!! Thank you!
Posted: 12/26/2008 - 03:47 pm
	Hope everyone had a very Merry Christmas! We all did. Jocelyn did a great job. I added some new pictures. She is enjoying all her new things.
Posted: 12/17/2008 - 05:04 am
	Hello! Everyone. Thanks for checking in on us. We are still hybernating. All is well. Jocelyn is teething so she gets really junky at times but other than that is doing very well. We did just add a few more pictures if you want to take a look. Jocelyn loves her some TV. She is really cute with some of the shows/songs she will attempt to sing along. It is adorable. Also she can tell you what a dog says and what a cat says. I will try to record it and add it to the look what I can do. Other than that not much is new. Hope everyone is having a great holiday season so far. We love you!
Posted: 11/19/2008 - 03:12 pm
	We just want to say hello! Remember no news is good news around here. Not much is going on. We are patiently waiting inside for the warm weather to come back. Things have been kind of quiet around here. We did get the new TLSO. She is not so fond of it but is tolerating it. I like it much better now that it is two pieces. Hope everyone is doing well! We will update soon. Please pray for safe and happy travels. Jocelyn is not so fond of long car rides and we are going to attempt to visit the family for Thanksgiving. So we are praying that she will do well traveling. Thank you!
Posted: 11/01/2008 - 02:05 pm
	Hope everyone had a great Halloween! We did. Jocelyn had a busy day but did great. We dressed her up as a little farmer girl. She was a cutie. We took her to church where they do trunk or treat. For those of you who don't know what it is (I didn't until I moved here) we go to the church and several people volunteer there cars. So we did. We all park cars and lift the trunks. The trunks get decorated and the children go trick or treating from trunk to trunk. It was cute. We put Jocelyn in her wagon in her little costume and she got to watch the children walking around to get candy. She was a big hit!
Posted: 10/27/2008 - 04:21 pm
	Jocelyn is doing well! She has gotten a few computer games and is catching on quickly. She really enjoys it. She is a little click happy. But has learned that if the music stops hit the button again. I think I listened to Old Mac Donald 40 something times this morning. :) We love to listen to Jocelyn trying to talk and laughing, her laugh has got to be one of my most favorite sounds EVER! She has gotten both Shane and I laughing out loud with her. We just love it. I will try to catch it on video. As for the norm.... We are just working on getting a TLSO (kind of like a back brace, it helps with scoliosis) for Jocelyn. It has been a little difficult. The one they made has a hole big enough for the g-tube but still seems to constrict her breathing. She fusses the whole time she is in it. I am working on sending pictures that I have found of other childrens to help them to get hers more comfortable. They want to keep it solid and make more room in the tummy area and I am trying to get them to cut the tummy area out. We'll see. I guess when you cut it out he says in takes away from the amount of support it gives. I'll keep you updated. Hopefully we can figure this out.
Posted: 10/27/2008 - 03:57 pm
	Thank you! Thank you! Thank you! We are so thankful for all of the participation, donations, help, etc. with the golf tournament. It went very well. Please take a look at the pictures. If anyone one else has pictures please feel free to e-mail them to us. We would love to add them to the website. We hope you will join us again next year. Thanks Again!
Posted: 09/29/2008 - 04:51 pm
	.......THANK YOU SOOOOOO MUCH!!!!!!!!........ There are not words to say how thankful we are for everything you all have done for us. It was great to see everyone at the benifit. It was great to see so many of our friends and family that we have not gotten to see in such a long time. Please keep in touch. The traveling was a little ruff. Jocelyn just has trouble being in the car for so long. But we made it back! She is working on getting back on schedule. She has just been real sleepy. The doctors appointment with Dr. Back went well. We were glad that we were able to meet him. He was able to confirm a lot of what we have learned and have been reading about. He also gave us some recommendations and answered our questions. Over all we had a great weekend. Thank you again for everything!
Posted: 09/23/2008 - 02:04 pm
	So far, So good! We are packing up. We are very excited to visit with Dr. Bach and to get to see so many of our friends and family at the benifit. Please keep Jocelyn in you prayers as we will be traveling such a long way and we will be around lots of people. We pray for safe travels, a wonderful visit with friends, family and Dr. Bach, and most of all for Jocelyn's health, also for our puppies who will be left alone for the fist time ever (We have people checking in, but it's not the same. They are our babies too). We are getting close to that time of the year and we just want to be sure we keep her well. We will see most of you soon. Lots of love! The Lee Family
Posted: 09/18/2008 - 02:18 pm
	So.. It has been a while. I am sorry. There just hasn't been too much to write about. Same old, Same old which is always good around here. Not to mention our computer is sooooooo slow. We are just trying to get everything ready to be able to make the trip at the end of the month. I have been crazy on the telephone with doctors offices and caseworkers. You know it is a shame. They all probably think I am absolutely crazy. But if I'm not it is ten times harder to get what I need for Jocelyn. To sum it up we have been trying to line up the Synagis (RSV) shot for Jocelyn. We had been discussing it and finally after a great recomeendation decided to switch pediatricians. The one we wanted to switch to has a 16 year old boy who has SMA. We assumed this office would have great resourses and contact info for us. You know what happens when you assume. So anyway the new office calls and tells me that Jocelyn doesn't meet the criteria to receive the shot. Well we all know she needs it she is only 16 months. It is most dangerous in children under 2 and the complications from getting the virus could be fatal to her. She just can't fight of illness like we can. They asked for her to come in for an evaluation. But she also turns 18 months Oct.22nd then needs to go in for the shots. Sooo I don't want to expose her to the doctors office durring one of the sickest times of the year that many times in a month. I understand to become and "established patient" I needed to go in before they could proceed. Then we were going to combine the next to appointments. But they kept saying she didn't meet criteria for the RSV shot and they don't know her yet. My opinion was that wether you know her or not you know what she has and I felt they should have known how much she needed this shot. I just wanted to hear the doctor say. I know she needs it. Bring her in and we will go from there but instead it was "She doesn't meet the criteria". It is a shame because I heard lots of great things about the doctor we were trying to get to but for some reason I guess it just wasn't meant to be. The office manager said "not that I am trying to turn away patients but if your previous doctor was willing to do this why are you trying to leave." She also said they weren't going to lie for me to get the shot. She just couldn't understand that Jocelyn needed this shot and I wasn't asking anyone to lie for me. Luckily the pediaticians office that I have been at is willing to do this for me they have been a great help. I was only going to switch because I thought I found someone with more experience. But the current pediatrician and I even if we are learning together they show compasion and care about Jocelyn. So we are staying put.
Posted: 08/16/2008 - 06:19 pm
	Just wanted to let everyone know so far so good. There really isn't much going on. Just trying to enjoy what is left of the summer. After much thought and trying to decide what to do about the nissen. We have finally decided to get ahold of Dr.Bach. He said to wait on the surgery as long as her sats stay above 94 while awake. We are very excited to say that we will be visiting him in September. We just feel that it will benifit Jocelyn tremendously for us to speak with him and to be sure we know we are doing all that we can do for her and doing it all the correct way. It should work out since we will be in MD the weekend of Sept. 26th we will just come up sooner and go a little further. Dr.Bach is only 2 1/2 hours from where we will be staying for the benifit. We will pray that Jocelyn stays healthy and is up for the traveling.
Posted: 07/30/2008 - 01:25 pm
	First of all thank you so much to all of you who check in regularly and who are thinking and praying for our little girl. It means so much to us. As for the update..... Yesterday we went to Duke for the follow-up exam. And for a GI empting study. The good news is they say she is doing well. And for us to keep doing what we are doing. The bad news is that they have discovered that she is refluxing. Which if you don't already know that for Jocelyn could mean aspiration which could lead to pnemonia. She is holding her own now but they say with the reflux there the risk is there. The suggestions are surgery to place a nissen which basically will tie off or tighten, not sure, the esophogus. This in turn would prevent the reflux. The surgery would just be tough on her. Or we could use a J-tube wich would be thread through her G tube, this would make it so she was fed directly to the intestines instead of the stomach eliminating reflux. This would also mean that she would have to be on continueous feeds. And the third option is to try medication. Which I suppose is what we are opting for first. The doctor is pretty confident that she will need the nissen though, eventually. We will see I guess. The other news that we got was that the chest x-ray is still showing the atelectisis. we are for some reason unable to get rid of this. The disapointing part of this is that When we were in ICU two weeks ago they did 4 different x-rays all showing improvement if any of the atelectisis. The only difference is that they did them laying down in the PICU. Apparently thay may be the reason they can't see it? But on a positive note..... Jocelyn is in good spirits. She seems to be feeling much better.
Posted: 07/22/2008 - 07:45 pm
	Hi All - Aunt Nikki and Uncle Derek here! Just wanted to give everyone an update on how our favorite girl is doing. We had a bit of a scare last Wednesday. Jocelyn went into Pulmonary Arrest and thanks to Mommy, Aunt Janice and Uncle Mike doing CPR and calling the ambulance she held out until the ambulance arrived. They took her to Wake Med hospital. She was in the Pediatric ICU for four days. Although we are not positive as to what the cause was she was given medicine to break up the mucus and Jen and Shane got to take home yet another machine. Please pray that this helps clear up her congestion so that they can cut back her treatments, which stress her out. Please keep everyone in your prayers and thoughts as always.
Posted: 07/14/2008 - 07:08 pm
	Jocelyn is doing well. We were able to get the bipap machine but still a month later we still don't have a mask that fits. Still looking though.
Posted: 06/20/2008 - 05:47 pm
	So.... The doctor finally got a chance to call back. As for the sleep study she did very well. They would still like to put her on bipap at night. It is supposed to help rest her muscles so she will have more energy durring the day. They are trying to get us the respironics AVAPS machine???? I really don't know much about this stuff yet. I guess I will learn. And for the GI study we are holding off a little longer on that. Jocelyn is doing much better on the peptimen Jr. I am still interested on in the AA diet but not sure when to switch. She seems to be doing well for now.
Posted: 06/12/2008 - 12:53 pm
	We kind of have the results of the sleep study. A nurse called to say that Dr. Kravitzs' plan is to start her on bipap at night with settings of 15 over 4. I asked about he sleep study and she said she only knows what she has in front of her and basically that says she had several mixed apneas and would like to begin bipap. Nothing specific. I have asked for the doctor to call or schedule follow up or something. I would like to know some of the details. Now it is trying to figure out which machine and how to get it started. I'll keep you informed.
Posted: 05/30/2008 - 03:55 pm
	How was her appointment???? Well the x-ray shows that she still has the atalectisis ?sp? Very dissappointing. Therefore we met with respiratory therapy and she finally had us increase the pressures of the cough assisst to almost 40 both ways. The nutritionsist we were looking to talk to was out sick. The fill in really didn't know about SMA. As for the doctor he just listened to her and told us the results of the x-ray. He then discussed things/people he would like to put us in contact with. Ex; a GI study to officially see if she has reflux, and their P.T. As for the sleep study. Just not fun. She just cries the whole time they are hooking her up. Then it was the night they wanted to introduce her to bipap and see what settings she would need??? So then finding a mask sucked. Eventually they were done setting her up but she had a long night. The bipap kept making her spit. Once she fell asleep she probably woke up at least every hour fussing. It was a long night. It could take up till 14 days to get the results of the sleep study so now we just wait. He did say he wanted to try to rush the results hoping to have them next week. We will see. As for Jocelyn she is happy to be home:)
Posted: 05/19/2008 - 02:16 pm
	So last night little Miss Jocelyn was laying in her bed. She wanted the pacifier and Daddy had moved her to her back. She rolled back to her side to get it. We were so proud of her. I do believe some of it was the way she was laying she ws able to use her arm to get her over but it is a huge accomplishment in our eyes. We were able record her doing it. So if you want to see it, it is in the "I'm one" pictures. Yeah! What a big girl.
Posted: 05/07/2008 - 08:40 pm
	Some new info. about the sleep study issues.... So it has been determined that bipap will be better than oxygen. UNC is not as equiped as Duke is to do the sleep study with the bipap so we are being transfered to Duke. We went yesterday to meet the doctor who specializes in pulminary and sleep disorders. So far things are well. What we did learn through this evaluation is that Jocelyn has atelectisis(partially collapsed lung)still or again??? He recommended that we do aggressive care for the next two weeks then begin the sleep study with the bipap. This way she will be closer to her norm. So as of now she will go back to Duke on the 26th. Then do the sleep study on the 28th as long as everything goes well.
Posted: 04/29/2008 - 12:37 pm
	Well Jocelyn had her birthday party this past Sat. I was so proud of her. She had a long day and did wonderful. We want to say thank you to all that were able to share in this special day with us. Those that were unable to be there please enjoy the pictures.
Posted: 04/24/2008 - 07:08 am
	Our baby girl is 1. Where has the time gone? She had a great day but can't wait to see her friends and family on Sat. Jocelyn's one year check-up was yesterday. The doc says she looks and sounds good. She just wants her to put on some weight. We are trying. Still not sure if this pedisure is agreeing with her. Also Jocelyn got out of having to get her shots. The doctor wanted to wait until next week because I had told her Jocelyn had a low fever the night before. I think???? it is from teething. Her little teeth take forever to come through. Hopefully I am right.
Posted: 04/17/2008 - 11:44 am
	We recieved the results of the sleep study that was done on April 4th. They say she had 21 central apneas durring the night. This is something they are concerned about and want to do another study soon using oxygen to sleep to see if that makes a difference. I am not sure about using oxygen. Some of the things we have read say that they become dependent on the oxygen??? We will see. It is disappointing to hear this because she seems to be doing well right now. I guess we will see what this next study shows.
Posted: 04/16/2008 - 12:58 pm
	April 2008 I know the month is not over yet but I am finally starting to catch up with this journal so thought I would let you know how she is doing. As for the weight..... not loosing but still not gaining much. Before we started the reflux medicine Shane and I decided to stop using the formula for a little bit to see if that made a difference. It was the only thing we had done different since Feb. Surprise, surprise, she is not spitting up any more. Yeah! But with out the formula she doesn't have the extra calories so we are going to begin using this pediasure that they want to put her on when she turns one. Hopefully she is o.k with it. Other than that we are just planning a birthday party! Yeah! It is so hard to believe she is going to be one already.
Posted: 04/16/2008 - 12:50 pm
	March 2008 Jocelyn has been doing well. She doesn't like us using all these different machines. But so far it seems to be helping. We have been visiting the pediatrician on a regular basis for weight check. This seems to be our newest issue. She had lost some wieght while she was sick and the nutritionist and the pediatrician agreed that we should add formula to her milk for extra calories. So we did. She has been spitting up off and on. Reflux has been discussed but we are not sure. They want to put her on reflux medicine. It is strange to me because before the month of Feb. she almost never spit up. The scary part about her spitting up is that she could be aspirating and that can cause pnemonia.
Posted: 04/16/2008 - 12:41 pm
	February 2008 Wow! Where to begin..... This was a bad month. Jocelyn started out the month getting pnemonia. We spent 3 days at WakeMed Hospital. We came home with a suction machine to help with the extra secrections. A week later she went back to the hospital for a partially calapsed lung (atelectisis??sp?). We then stayed at UNC for 4 days. This time she came home with a pulseox machine and some oxygen for just incase. Unfortunately, another week later back to the hospital we went. This time she had caught the flu. We stayed and WakeMed for 8 days this time. It took a while to get her off of the oxygen. Poor thing :( It was a long month. After this stay we now have a cough assist machine. Hopefully all of these machines will help keep her out of the hopitals.
Posted: 04/16/2008 - 12:32 pm
	January 2008 This month was pretty uneventful. Which at this point is good for us. We were able to visit with family and friends. Jocelyn is doing well.
Posted: 03/30/2008 - 08:50 pm
	December 2007 Well the results came in.... It was positive. She has SMA. Spinal Muscular Atrophy. (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers. Why us? How could this be? It is not fair! Are all things that went through our head. These are all things we may never know. What we do know is that we have been choosen, given the honor of caring and loving for this precious little angel we get to call our daughter. It is not tears and fear she needs to see each day. It is happiness, the same happiness we see in her. We had to remind ourselves that somehow this is all part of God's Plan. We need to have faith and trust in the Lord.
Posted: 03/30/2008 - 08:48 pm
	November 2007 Wow! Where do I begin???? Jocelyn still hadn't been given any solid food because our pediatrician wanted to be sure that she could handle it so we scheduled a swallow study before we could introduce it to her. Unfortunately the swallow study results showed that Jocelyn was aspirating. This means what ever she swallows is also going into here lungs. This can cause pnuemonia. They told us she shouldn't have anything by mouth and to contact the pedetrician immediately. They admitted us to the hospital to have a temporary feeding tube placed as she was evaluted and they could discuss with us what to do. The doctors wanted to do surgery to insert a feeding tube through her stomach. This was the weekend before Thanksgiving. They taught me how to feed her and let us go home for the holiday. The sergury was scheduled for the 27th. As much as we didn't want to have to do this we knew it would be best for her. ...... We were still waiting for the test results for the genetics lab. Apparently someone messed up the test and we had to have it redone. ....
Posted: 03/30/2008 - 08:16 pm
	October 2007 We were waiting and praying...... In disbelief because we would spend each and every day with this beautiful happy baby. How could this be. Durring this time we had met with the neurologist from UNC who basically unofficialy diagnosed her. The is no way to put into words the thoughts and feelings you have as a parent hearing this about you child. Still we prayed for the results to be negative and for this not to be so.
Posted: 03/30/2008 - 08:08 pm
	September 2007 This was a very busy month for our little angel. She was tested for what seemed to be everything under the sun. At this time each test seemed to come back normal and we would feel relieved and prayed that it was just a form of hypotonia that she may out grow. At one of her appointments the neurologist noticed that Jocelyn had tongue fasiculations. She was pretty sure this ment she had SMA but wanted to be sure. This is when we were referred to the neurologist at UNC and also to have a genetic test done.
Posted: 03/30/2008 - 07:58 pm
	August 2007 We had brought our concern to the attention of the doctor. She used the word hypotonia and refered us to a neurologist. We were very worried and began looking up things on the internet(Scary.... unless you know exactly what your looking for)
Posted: 03/30/2008 - 07:55 pm
	July 2007 We noticed that Jocelyn still at 3 months old would not pick her head up while laying on her tummy. We were hoping this was just developmental and she would lift it when she was ready.
Posted: 03/25/2008 - 11:34 am
	I have created this journal for Jennifer to post to. Hopefully this will make things easier for communicating to all friends and family. --Derek
Update
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