Papa and Joselain's silly movies!

Dr's..pumpkins..meds...witches..vomit...Happy Halloween!

I know it has been a long time since I have updated but life has been a bit crazy these last couple of weeks. I thought I would give just a general update about where we are with each Dr. these days.

GI ~~ They think Kennedy is doing great in the weight dept. Kennedy has gotten up to 18lbs 3ozs but did drop down to 17lbs 10ozs after her URI infection. Dr. Kent expressed how well the BD is doing for Keni. She stated that she is now using Keni as a poster child for the BD since it is still not very well known in the US. That made me feel proud! I am glad that I held my ground with the Dr.'s and got Kennedy on the BD in the first place because as I told you guys before they didn't want kennedy to start it, since they have lack of data on the BD. Kennedy also lost one med YEA! Now she is only on one GERD med since her vomiting is now under control.

Neuro ~~ Kennedy's MRI showed that her brain is still developing right along with her age. WE ARE SO HAPPY! The Dr. felt that Kennedy is looking great with her development skills. He stated that if she is still looking good in the next 6 months that he would discharged her from his care! She would then be followed by a developmental pediatrician type dr.

Plastic's ~~ We went over Kennedy temporal MRI. She confirmed what we already thought just by watching her. Kennedy 7th nerve is there but is very small and doesn't have enough "juice" to form facial expression. I am glad to have answers, in a way it helps me come more to terms with the one thing that effects ME the most. Their are options for facial reanimation but we will not be crossing that bridge until Keni is about 4-5yrs old.

Pulmonary ~~ Keni is scheduled to have an over night sleep study on November 18th. Nana will be joining Keni at her sleep over at MUSC.(thank you nana) They are hoping to find out why Kennedy's heart rate is going down so far while she is sleeping. They are using this to see if she may need a CPAP at night while she sleeps.

Neuro Surgeon ~~ When they measured Kennedy's head two wks after the shunt surgery it showed that her head had grown" just a little little bit" but they decided to change the shunt gage. There is a little gage on the side of Kennedy's head, underneath the skin, that they use to change how much the shunt works. It works by moving the gage from 1 through 7. One being the shunt is working the hardest and at seven the shunt is not doing anything at all ( like it is turned off). Kennedy's was a 5 after surgery but they decided to move it to a 4 and will ck her in another week.

As you can see we have been busy busy running around town.

After Kennedy got over her infection she has been back to her normal self. EXCEPT for the "clingy stage" at first I will admit I thought it was soooo cute! well that lasted about a day and now I am def ready for it to pass.

We also celebrated Joselain's 9th Birthday on Saturday along with her cousin annaleigh's! Joselain finally got the present I have been waiting a long time to give her. DISNEY WORLD !!!!! Yup, that is right people we are leaving Nov 11th for 5 days !! Kennedy will be staying at home with her Nana and Papa while we get some well needed and well deserved vacation time!




Joselain and Annaleigh

Location:Goose Creek

Playing

Kennedy being Kennedy

One more down, more to come

Kennedy is back to herself and finally broke that fever. We have a check-up with the neurosurgeon on Oct 16th but I am expecting everything to be just fine. Kennedy also has a Dr. appt. with her plastic surgeon next Wednesday to talk about her MRI results of her facial nerve. Our ENT told us a little bit about the results saying that her facial nerves are in the wrong place due to the fact that her inner ears are form differently than normal. I am very eager to hear what the plastic's Dr. has to say about treatment if there is any. As you know her lack of facial expression is one of the hardest things I deal with but everyday is getting easier and if I need a reminder about how LUCKY I am, I just talk to some of the other moms on the CHARGE FB page. Kennedy still needs a surgery to fix her tear duct in her left eye and it was supposed to be in Nov. I have decided to push it off till next year because of this unexpected shunt surgery, I don't want her under anesthesia again this year. Okay enough of that! It's fall people, time for pumpkins, candy, food , and family and I am very excited ! Kennedy and Joselain have a costume birthday party this weekend. Kennedy is going as a lady bug and Jos as a robot ( that she is making herself) can't wait to post pics to show you guys how cute they are :)




Kennedy after I put a little frosting on her face. She tasted a little of it but was not to impressed.

One more surgery , come and gone......

What a week it has been! There have been really good highs and not so good lows but we made it through. Kennedy went into to surgery Wednesday morning around 9:15 a.m. and got through at around 11 a.m.. Her Dr. says that it went off without a hitch! He did let us know that the pressure in her brain was a little high, nothing to crazy, but higher than normal. For me that gave me some relief. As you know, I was having some doubts as to whether this was something Keni required; but hearing him tell me that her pressure was high made me happy to know I did make the right decision for her, she needed this. During the night at the hospital Kennedy did have some issues with her temperature but the Dr. told us that it was completely normal. After a very sleepless night, Kennedy and I broke out of that joint bright and early Thursday morning. Kennedy is back to her normal self, which was another fear of mine. I was scared that Kennedy might wake up and not be herself anymore (I mean it was brain surgery for crying out loud!). Thankfully, Kennedy is her feisty, silly, and crazy normal once again. She is still dealing with an up and down temperature; it got to about 102 degrees yesterday and she had a little vomiting so we took her down to MUSC emergency room last night. The neurosurgeon felt that she was looking good and that temperature was still fine to continue with tylenol, but if she still can't get it under control by Sunday night to come back (so lets keep are fingers crossed). So, after at least a $1200.00 ER fee and my peace of mind we are home and doing fine. I want to thank everyone again for all your thoughts and prayers!


Kennedy being silly before surgery.


Don't you love her crazy hair after surgery? They said that they washed her hair. So, I asked with what ? vaseline!





Kennedy back to her normal playing with bubbles in the tub.

Location:Goose Creek

So simple but so true

~~~This is something that my friend Ranee emailed to me months and months ago but at that time I didn't want to believe or understand it. Now, I couldn't have written the explanation any better ! ~~~
©1987
I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Home .... For now :-(

Kennedy was discharged home this morning after we got her temp under control. Sadly, Kennedy is still having trouble keeping her temp under control and started to do a little vomiting which we are watching with a close eye . So, please Kennedy in your thoughts. I will give a full update probably tomorrow when I am not so sleeping ! Thanks for all the texts , FB comments, calls and emails. We love all ya'll !




Kennedy was breaking out of the hospital this morning in their wagon :-)

Location:Amy Dr,Goose Creek,United States