Caring Bridge 3/10/12

 Kennedy has been doing great, even though the right side of her nose has closed up her lefted side is going good!!!! So, if we keep it good and open we are still on our way to getting the trach out!!! They have now down sized the trach and given her a pasy miror valve so that she can start to practice what it will be like to breath out of her nose and mouth. When Keni is wearing the valve we can now hear our baby coo and crying WE ARE SO EXCITED TO HEAR HER :-) ~~ We got some CT results about keni ears, she does need to have tubes placed but it will probably be another six months or so until her little ears are big enough but after the tubes are placed they feel that her right ear will be strong enough for her hearing and she will not need hearing aids ( her lefted ear has moderate to severe hearing lose) but until the surgery they feel they want to put a hearing aid on the right side just to give her the best hearing possible at her young age. I have started to do some signing with Keni and hopefully she will be able to start signing back in the near future. ~~~ also the CT showed that Kennedy does not have any Semi Circular Cancls in both ears. They help with balance with sitting and walking. It is not something that they can fix it is just something that our little trooper can over come. I have talked to a few families with CHARGE and they say that our little guys just learn to do it and it might take them a few extra years to walk steady but IT WILL HAPPEN!!!!! ~~~ On a much lighter note kennedy has hit some great little milestones lately on Feb 7th- she got her first tooth, March 5th- she showed us that she can clap ( which was so cute) and she is showing great progress on sitting, March 6th- we got to hear her coo for the first time with her new valve and March 8th- I lost her for the first time LOL. I was helping Joselain with her homework and had my back turned to Keni who was on the floor for about maybe 5 mins and when i turned around she was gone ! and where did i find her ?!?!?! under nana's chair in the living room ... She just showed me that she is a scooting like crazy and you can't turn your eye for even a minute anymore ( that little stinker) ...

Caring Bridge 01/28/12

Well Kennedy nose did not do well with the stents . One week after having the stents placed they took Keni back to the OR to remove them since they were causing breakdown. Even though Keni seems to be much happier with them out it does increase the chance for the bone to grow back. We are very hopeful along with keni Dr.'s that she will do great ! She will have to go back to the OR about every two to three weeks to have her nose area cleaned up, so there will be less chance for scar tissue to form. Her next sch. date is 2/8/12. I hope to keep you guys updated with good news in the next few weeks

Caring Bridge 01/19/12

 Kennedy did great yesterday with her nose surgery! Two stents were placed in her nose that she will keep for 4 to 6 weeks! We have kept her on some good drugs so that she is comfortable! They are saying that we will be able to go home tomorrow which we are very excited about. The next few weeks will be full of check up appts where we will be hopefully trying different covers to go over Kennedy trach to get her ready for taking that trach out. When they take the stents out is when Keni is at risk for her nose growing back together . Everyone keep your fingers crossed that it does not happen. ENT plans on going back in when they take the stents out and cleaning up in the nose area and hopefully that will help as well. The chance that it could grow back really depends on the pt's and how their bodies make scar tissue. ~~ On another note they also did her hearing test again where they confirmed that she does not have very good hearing in her left ear but she has very good hearing in her right ear and thankfully for communcation you only need ONE good ear. They do not plan on placing her bad ear with hearing aids because they say it will be more harm than good in her hearing ability. So after all that kennedy did a great job, she is healing nicely, and hopefully this time tomorrow will we be home and cuddling with Joselain and me!!

Caring Bridge 01/14/12

 Just to give everyone a update . Kennedy has been doing great gaining weight and makes small changes everyday!  ~~~~  Kennedy was diagnosed with a conditon called CHARGE syndrome. Jeremy and I are learning new things about this syndrome everyday. From what we have learned Keni is on the mild side of the condition. We are so proud of Kennedy, she has come a long way since June 8th, 2011 and is making great progress everyday! We wanted to share this news with are family and friends so you can come along on our new journey !!  ~~~~ 4 DAYS until Keni big nose surgery!!!

Caring Bridge 12/18/11

         On Thursday we found out that Kennedy will be having her Trach surgery on January 18th 2012 !!  We are VERY excited ! She will be getting her first nose job!! hehehe .... Kennedy will still have her trach when she comes out of surgery. They will let her nose heal first before they put a cap on the trach. After she has worn the cap and done well with her breathing then they will remove the trach. This whole process can take anywhere from a few weeks to a month ! We are just so happy to get the process started . I honestly didn't think we would be having this done till about March or April so this was a great early Christmas present!!! We are busy getting everything ready for Keni first Christmas and she is just love looking at all the lights! We hope that ya'll have a very Merry Christmas and Happy New Year !!

Caring Bridge 11/10/11

Kennedy has been a little sick but thanks to nana and daddy taking great care of her over the weekend we have thankfully been able to keep Keni out of the ER ! She is now doing better still has a little cough but is back on her feeds. We are still a little stressed that Kennedy is still throwing up and we are trying everything we can to firgure it out . We have a GI Dr.s appt next week and I am hoping to get some answer or some help with this issue . It is very hard for us to watch her suffer with hard coughing and gagging. So, say a little prayer that we can soon help are little angel with this issue ! Hope to update your guys with good news soon!

Caring Bridge 10/22/11

 SORRY :( it has been awhile since my last update! Life has been crazy between Dr.'s appts and Joselain's 8th Bday coming up ! ~~~~~~~~We have been getting great news lately~ Kennedy went to the eye Dr. and got her first pair of terminator glasses ! so cute! but she always got great news that she will not have to have glasses or contacts she does have a coloboma in her left eye but thankfully it is just in the right spot that the Dr. feels that it will not affect her vision !! she does have a blocked tear duct but he says 99% fix themselves. She always saw her ENT Dr. last week , she said that ken is doing great and wants to see her back in Dec. for a facial CT so she can get the ball rolling on Kennedy having her nose fixed ( so we are thinking maybe the beginning of next year) :-) lets just say I am one happy momma with all this great news ! Keni has been stating well off her O2 and hopefully next week she will be off for good! That would mean less for us to tote around and are electric bill will drop (Thank gosh it is averaging a $100.00 more a month YUCK! ) Right now Keni is seeing OT,PT, and Speench once a week for an hour so lets just say we are really busy during the week! I hope to update your guys with more great news next week!

Caring Bridge 09/06/11

 Kennedy has been to a couple of Dr.'s since my last entry ... Our big girl is weighing in at 9lbs 10ozs and 21inches long as of last Thursday! She has been doing well at home she still is spitting up and doing a little throw up but not as much ! (Thank gosh) . She had her first hearing test on Friday and found out that she has 100% hearing on her right side. On her left her canal is just a little smaller so it was hard for them to get the device to stay in her tiny ear. They did say that she does hear on the lefted but not sure to what degree. They talked with the ENT and decided that when she goes under for her nose surgery they will do a screening then because with this hearing test she had the babies have to stay completely still the whole time and if you know Ken that was never going to happen !! ;) So while she is under they will get a better and more accurate test . We are very happy with what we know so far and one good ear means that she will have not problem with speech ! YEAH! ~~ Her ENT check-up went good no problems there and they sch. her 1st check-up about her nose on 10/20/11 so I can't wait to see how close she is to getting her Nose job ..hehe !

Caring Bridge 08/26/11

Today Kennedy went for a 2nd check-up since leaving the hospital on Aug 17th ~~ She is weighing in at a HUGE weight of 9lbs 2ozs. ( she in the 5th % for a preemie .. which is good )  ~ Kennedy has had a problem with throwing up her feeds and we have been trouble shooting different reason why, her Dr. doesn't seem to be that worried about it because she is still gaining good Wt. we are going to be thicking up her feeds and hopefully that will help her. ~~ Kennedy is doing well on the oxygen my RT (Mrs.Karin) is working on bring her down on the O2's she is on about 25% down from 35% last week and doing great! So hopefully very soon she will be off the trach collar during the day and only use it at night !!  That will be one less thing to carry around so we are very excited !! ~~ Ken has three Dr.'s appt next week, one of them being her hearing test. So keep your fringers crossed that everything turns out well!!

Caring Bridge 08/25/11

Kennedy spent a total of 10 weeks in the NICU at MUSC from June 8th to August 17th. We had a lot of up and downs while in the NICU it was a roller coaster that Jeremy and I do not wish to experience again. We shed a few smiles and a lot of tears we spent everyday if not twice a day down at the hospital. Getting to watch Kennedy grow over the weeks was very rewarding she went from 3lbs 14oz to a big 8lbs 3oz when she lefted. While in the hospital the Dr's discovered that Ken has a nose deformity where their is a blockage behind her nose where she could not breathe through her nose ( babies breathe through their nose only till the age of about 6 months) as a result Ken had to have a trach placed. The Dr.'s are saying that she will have the trach until her nostrils get big enough to fit a drill and a camera in them at the same time. They are estimating that she will be big enough around 8 to 12 months of age. With the trach most babies also get a G-tube which is feeding tube place on the outside of the body right at the stomach. They place them so thet the babies can get extra calories to grow faster and the babies can't possibly take in that much feed in one day without the G-tube. So, Kennedy has this as well, On July 20th she had these both placed at the same time and did excellent during and after the surgery.    

Kennedy Grace Kulas
Born: June 8th, 2011 @ 10:10 a.m.
Weight: 3lbs 14oz
Kennedy was born at MUSC in Charleston, SC
She was born at 31 plus 1 .... 9 weeks early !!!

Caring Bridge

 I decided to make the page for Kennedy Grace to keep everyone updated on her progress since leaving the NICU. I hope that for all of you that we don't get to speak with on a day to day basis that this will keep you updated and informed on all the great things that have happened and will happen with Kennedy in the future. Please feel free to leave comments or questions that me or Kennedy can answer for you ! We love talking with everyone!