Actually sad the Dr. appt was ....

Kennedy was supposed to have a eye Dr. appt on Thursday to decide when we can schedule her eye surgery to fix her malformed tear duct. They called me that morning to cancel because the Dr. was sick and for once I was really bummed. I have been looking forward to getting a date so that we can have that fixed along with her tubes for the ears, MRI of the brain , and MRI of the temporal bones. ..I never thought I would sad to miss an appt. The next available appt is not till June 14th I guess I waited this long I can wait a few more BUMMED! Kennedy has been doing really well on her PMV and has been making all kinds of noise. Thanks to nana she now a little hole in her valve to help her a little with breathing through her month. Kennedy is very happy to get a little help in the passy miror valve (PMV) department because it is not her favorite thing to do. We are hoping to get her to where she can wear the PMV all day and have know issues. This will only get us closer to getting that trach OUT! fingers crossed people! This is the last week of school THANK GOSH! I think Joselain feels the same way. We are gearing up to go camping the first week of June. We are very excited as a family to get away for awhile. Then this will be another first for my Ken Ken so I am ready! We are on week two on the BD with Kennedy and it is going very well. We have has a little vomit when we push her food to fast ( we are learning ) or if Kennedy is doing a lot of coughing after she gets a full belly. Another positive note little miss is getting on a more regular nap schedule and I think it is to having a full belly is making my baby sleepy.

Dr. Day

So today we had a very busy day ( thanks nana for tagging along) went started off by visiting the GI dr. at MUSC. Finally, we got the go ahead to start Kennedy on a BD and only have to come back in a month to ck her progress ( whatever the answer was today THIS momma was going to do it anyway). I am super excited even though I have had her on the diet for three days now. She is doing very well, we have stop feeding her at night and she has still continuing to sleep 10 to 11 hours YEAH! So now I can offically taking one more bag of the list of crap we bring just to run to store, three down one to go ! After leaving downtown we headed to North Charleston to visit for the first time with a facial palstic surgeon. She explained to us about how the facial nerves work and what could be going on with Keni. She said that after Kennedy's MRI later this year she will be able to tell us more about what keni has or doesn't have in the facial nerve dept. She also said their are things they can do for Kennedy to help her show facial expression but it would not be untill Kennedy gets a little older ( which is fine I just wanted to find out some answer about WHY she didn't show expression) Long explantation short is that she feels kennedy does have what she needs to show expression but they may be malformed or very small but won't be able to confirm that till after the MRI. I think Kennedy not smiling is one of the hardest things I deal with these days but it did help to at least know why. I am still dealing with this one thing that at this point I can not do anything about :(

Trach Pinic May 12, 2012

Last Saturday we took Kennedy to the 1st annual trach picnic that was thrown by MUSC. She had a great time she got her face painted with a little lady bug ( it lasted about 5 mins) but it was so cute while it was there. She also got to put her hand print on a tile and with that red paint you could just imagine how that went YIKES! :)  One of the best things about going was meeting other parents who have been or still in the same boat as us. It was a place that you could turn on your suction machine and not worry about people starring or making comments. It was a great place to get to share your story and hear others as well. While we were there I was approached by a lady name Cynthia who proceeded to tell me that her daughter Serenity also had CHARGE syndrome. You would have thought she told me that I had one the lottery!!!! It was great for me to talk with her about her experience. Her daughter was 21 months and walking with a walker! I think I might have talked her ear off with all my questions but I just had to ask and she was very friendly and didn't mind at all. I was glad that Keni got to meet her 1st little CHARGEr just like her! They were so cute next to each other! You would think I would have a picture to show you but I didn't want to seem like a weirdo and ask Hey I know we just met but can I get a picture of you daughter !?!?! ( But looking back and if I had the chance I would do it in a heart beat ! )

MUSC 1st Trach Pinic 2012

Inspiration

Yeah ! Kennedy is 11 months old today! Where has time gone!?!
    
          So, with everything that goes on in our everyday life from Dr.s appts to endless throw-up I have not a chance to have our family photos done! YIKES ! Keni is 11 months old and she has not had her pictures done professionally. I know if she was the "ideal" child I would have had them done right after birth and sometimes I feel bad about that but I also try to remind myself that I have a little more going on than the average bear. So last week I decided to look at a photographer website that I have  been drooling over for months now. While I was on their site I notice she had a giving back section. Under that section she was sharing that she was part of a program called Inspiration Through Art. I checked out the website and saw that it was a program that offered free photo secession's in your area with local photographers for children with life threatening diseases. At first I was thinking am I "in need" of a free service. Since we have brought  our angel in our life expenses have increase a lot with travel , gas , and supplies. I decided yes I think as a family and Kennedy need this. I applied and yesterday got an email that she was expected WE are super excited and can't wait to share them on Keni's blog :)


To all my CHARGEr mom's please fell free to check out the website. In the email they sent me they wanted me to spread the word about their program to other families with what they call "Little Hero's".  They also have volunteers that make or send stuff to your child randomly through out the year.

http://www.inspirationthroughart.org/  or www.facebook.com/dreamdoinspire

ZOO

                                                              Little Miss and Joselain
                                                                        at the zoo
                                                                  April 11th, 2012

GI Appt

Last week we got the go ahead from the GI Dr. to put Kennedy on the BD- Blenderized Diet ( which is where you take real food and put it into the blender and make it thin enough to push through her G-tube) We are VERY excited about this because we have heard nothing but good things it does for the kids. I am hoping with this she will stop throwing up and start to put on some weight! Keni is about 14lbs 3oz and I would like to keep her moving up in the weigh department. We met with a Dietitian today who told us for Keni age she should be about 19lbs ( I laughed out loud and said if she weighs that at two I would be happy). We are hoping to have a diet plan by Friday of this week and then we will get started! We are finally getting rid of the feeding pump WOO HOO! ( one less bag to carry around) Wewill just push her feeds in with a syringe which takes about 10 mins . We used to put her on the pump for a hour seven times a day. So, to go from that to 10mins 5 or 6 times a day makes us SO happy! ( and Kennedy too)

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 08/28/11

     Today we decided it would be nice to get out of the house so we took Kennedy to Target ~ Which three months ago would have been know big deal, grab your keys and purse and you would be out the door~ But now more after about 20 mins of packing and making sure you have everything you need from diapers to trach ties and then another 10 mins of loading everything in the car we were on are way ! Once you are in the car the rest of the day really isn't that bad . We spend about a hour in the store but not only do you have to make sure you have the milk and bread you have to make sure that you will not run out of O2 while your in there and that its not getting close to one of Kennedy seven feeds she eats a day .Thank gosh I am already a pretty good planner so figuring that out is not to hard for me. Ken and I got a few looks while we were their but it didn't brother me as much as I thought it would . I felt PROUD~   So kennedy first trip to the store was a lot of work but after a few times I sure it will become 2nd nature!

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!