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)