Camping June 2012

What a week we had camping! We decided that even through Kennedy might have some extra stuff going on compared to a "ideal child" doesn't mean that we can't do everyday things. So, we went camping with Joselain and our dog Sadie. It was a great week, we went for walks, fed the ducks, went to the beach, out on our boat, and even took Keni swimming. Joselain friends Tristan and Jazy joint us for the week as well. Kennedy did great and she had a blast. I knew from her 1st overnight stay at nana's house that she could stay overnight without all her machines just by keeping her on her therma vent. I couldn't have been happier with how her week turn out. I am so proud of her! She had a lot of firsts that week but the scary one for me was taking her IN the water just not on the shore. I did not have the balls to do it at first that was nana! I closed my eyes when she first took Keni out ! Its not that I don't trust nana is just the "what if's" . What if someone bums into you and you fall while holding her or what if you step on something in the lake and fall! SCARY! luckly it turned out fine everyone knew the rules while they were around her so we had no accidents. I can't say I will be doing that everyday but it was nice to take Kennedy out and let her experience how laying in her tube and soaking up the sun can be some much fun. We finished off the week with Kennedy's 1st birthday party and lets just say that Kennedy can't do anything without making sure that you will be talking about it. I started off as a very pretty day but soon ( like right when the party started) the sky fell out! We set up tents and tarps to keep people dry but before you knew things were falling and everyone was getting wet along with the food ! I should have put on the invite that it was a water party wear your suit! hehehe. Even with all the rain we had a blast and it will def be a party that noone will soon forget ! Pictures to follow soon!

Happy Happy Birthday

WOW! that is all I can say about 6/8/11. Now, here we are one year later and I would never have thought I would be at the place we are now. Kennedy has come so far and overcome so many things. More than that she has taught my family and me so much. She has taught me to slow down and enjoy life. She has made face things that I thought I would never. I have learned that I could LOVE someone so much that it hurts. Happy, Sad, excited, fear, lonely, depressed, and overwhelming joy are all the things that I have felt this last year. I want to thank Kennedy for making me a better person for showing me that life can change in one instance . For all that we have been through in the last year: a 10 week hospital stay, six surgeries, two ER visits, three therapies a week and numerous Dr.'s appts it show's I can't perdict the furture but Keni has taught me that it is OKAY and you don't need to you just need to live and enjoy all the moments even the small ones.

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