Folks Of Interest Lilly is getting ready for yet another surgery.

Hey everyone, it's been awhile since I put any updates about Lilly on here. The latest one was a month ago. She has a surgery coming up on August 6th, keep her in your prayers for a speedy and safe surgery.

Well Hello all,
I have no idea where the time has gone. I did not realize that it has been over 6 months since the last update. Sorry! So....here it goes. Lilly has continued to eat lunch everyday. She continues to work hard on her chewing and drinking skills. We have been to some new doctors and clinics. Lilly started seeing the Sinus Clinic at Children’s Hospital. She started with a cold in September and ended in January. She had 4 ear infections, 4 sinus type infections and 7 rounds of antibiotics. The ENT with the clinic believes that Lilly does have some type of Eustachian tube dysfunction. They also found that she has calcium deposits on all 3 bones in her middle right ear along with the large perforation in the ear drum. Her left ear has a very small perforation with some “ear gunk” stuck in it. We were sent to the ENT “Bone Spe******t” to have him take a look. He would still like to wait to “fix” the right ear until Lilly is a few years older. So for now we try to continue to use the hearing aide. Lilly did get another ear infection in her right ear just before school got out and the doctor believes it was caused by allergies and the hearing aide. Kind of makes it hard to wear the hearing aide.......
On that note.....the hearing aide has really helped Lilly with her speech. She can now be understood a little by someone who does not know her. We have had to add a new app to her I-pad because she is able to “say” 7-8-9-10 word sentences but they are hard to understand. She will be in Kindergarten next year and hopefully this app will help her to be understood. Lilly has continued to do well in school this year. Mom did not have to attend any days....we did have one small episode of missing mom. She continues to receive speech, physical, and occupational therapy at school. The school also started having the “deaf and hard of hearing” teacher come for Lilly. We continue with “feeding” therapy and occupational therapy privately.
We found out in January at Lilly’s orthopedic check-up at Shriner’s that not only is Lilly’s left hip coming out but now her right one is as well. We had scheduled the left hip for surgery on May 2nd but the pediatrician at Shriner’s said Lilly was not over her cold long enough (she does not know much about Lilly or Kabuki Syndrome) so they rescheduled it for June 6th. I later called the orthopedic doctor and asked if we could wait till August. We did not want Lilly to be casted/immobile for most of the summer. So Lilly will now be having the surgery on August 6th....and it will now be her right hip first. She has been having some pain with the right but not with the left. We are hoping that Lilly will be well enough. Unfortunately Lilly does not have a good immune system so we are praying for a healthy summer. On a funny “this is Lilly” note....had we gone ahead with the June surgery we would have had to cancel it anyway because of the ear infection!
We had a good check-up with the immunologist and the endocrinologist. We decided to spread out Lilly’s 5 year immunizations over 3 months since her immune system is not the best. Lilly had her blood drawn again for the endocrinologist and her numbers are good so we will continue with synthroid for the hypothyroidism. Her 5 year check with her pediatrician went well. We are doing pretty much all that we can and should be for Lilly.
I have Lilly’s summer pretty booked with appointments. Guess not much different from any other time of year. We have an “echo” of Lilly’s heart and a check-up with the Cardiologist on Monday. We have the big yearly check with the GI feeding team at the end of next week. Another check-up with the dentist was added after we saw him last week. Lilly has swollen gums and really needs to have her teeth cleaned. He would like Lilly to allow him in her mouth to clean, awake. She still is not quite ready yet but her teeth are getting bad again and I agree with not wanting to put her out just for a cleaning so.....? We have an appointment at Children’s at the end of the month at the Childhood and Development Center. Lilly is going to be “tested”
to see how she learns. They are going to be looking for things like sensory processing disorder, auditory processing disorder, visual processing disorder, autism, etc. Anything that would cause learning problems. It will be quite a hard/long appointment for Lilly. We hope she will have a really good day that day!
Lilly has been working hard on her self-care skills lately. Mostly by her choice. She has really improved with washing her hands and dressing herself. She continues to struggle with potty training. We are trying very hard to be ready for Kindergarten. She p***ed most of her prescreening. She needs to work on writing her name and cutting. Both of which are really hard for her. She is very smart with her letters, numbers, shapes, etc. I will say this, I do wonder if Lilly is just memorizing everything, if that makes sense? This seems to be a common learning problem with kids that have Kabuki. And Lilly does have an incredible memory! So until Lilly has to learn only with her eyes....????
Well, I know I missed a lot but time for the good stuff. Lilly has really come a long way in the last 6 months. She is really good at doctor appointments now. Her understanding of her special needs and all that goes with it has helped so much. She only continues to try harder!!!!!! That is all we could ever ask of her. Lilly has been starting to sing. If all of you could take a drive to grandma and grandpa’s house or therapy you would hear her “belt out” Adele. She is so awesome and she doesn’t even know it! Whenever she is jumping on the neighbor’s trampoline she always tells Makaiah that she wants more...meaning...Makaiah should not stop singing while Lilly is jumping. Thankfully, Lilly received those songs from Makaiah and Maitlyn so now Lilly can learn them. She is just having so much fun with singing! We (mom and Lilly) rode in a train in a parade as part of our Church’s “display” in the Father’s Day Summerfeste Festivities. She waved and said “hello” to everyone the entire parade. It was hot and long and Lilly did great!
And for the best news yet.....Lilly is 6 years old! (July 2nd). She will happily show you her six fingers every time! Another very big “Thank You” to everyone for your thoughts and prayers. Lilly would not be where she is now without them. A extra big “Thank You” to all of Lilly’s doctors, nurses, the******s and all involved in her care. She is here and doing well because of you! We hope everyone has a good summer! Ours has been hot and too dry but still good!
Thank you! Love-Lisa (Kerry and Lilly)
P.S. Always the best part....pics!



At the car show, not my car, Lilly just likes the color orange....






My wife held a gun to my head and made me put this one on. The kids at Lilly's B-Day party had fun dressing me up. I guess they thought I couldn't do it on my own. Who knows maybe I have a future at Wal Mart?!?!?!

 

Kerry hang in there, you've got a beautiful little girl and I hope all goes well with the stuff she has to go through, remember God never gives us more than we can handle but some times it seems like it. You and your family are in our prayers. God Bless

 

Prayers from here. What a sweetheart!!

Mick

 

We will pray for her, and for her parents.

 

Lifting Lilly up to the Lord for healing and your family for strength.

 

Im not someone you know but good thoughts here.

 

Anything and everything for a child. Bless your family.

 

what a cutie! prayer to Lilly and family.

 

Thoughts and pryers for your family.

And I think you may have a future @ WalMart....

 

Your daughter is beautiful. I can't imagine how stressful this must be, but you will maje it through this. Thoughts and prayers for your family.

 

I must also say to hang in there with regards to the learning challenges. Not everyone fits the cookie cutter mold for learning. As an example, my autistic brother had numerous challenges throughout his scholastic career. To make a long story short, he just received his masters degree in geography from Cal State Northridge and I am super proud of him. Hang in there and think positive.

 

Thanks guys, I know life with a special needs child is stressful but I wouldn't change it if I had to do it over again. Her syndrome and what she has gone through has made both her and us as parents who we are. Yeah it doesn't allow me to put money into building a hot rod or having a great house but what she gives is better than that. I still have the start for my hot rod, I may get to it someday and I may not. I still will however always have my Lil' Hot Rod!!!.............
This was taken a few years ago, but she'll always be....

 

Prayers for you and your family.

 

We are rooting for Lilly very beautiful daughter!!! May god bless Lilly and her family

 

I wish no child had to suffer. Many people take life for granted and are so materialistic that they don't take the time to realize that life itself is truly a gift and we should treasure every moment that we breath. Forget about IPhones and other superficial things that we waste time and money on and instead give love. Give it to your wife, your children, your parents, your pets, a complete stranger, for embracing love is embracing life itself. So simple.

 

God bless and hold your family. She is a cutie.

 

AMEN!!!! That's why I'm not worried about my cars so much these days. Yeah it'd be nice to go for a cruise in a nice car but my time with my daughter is the best thing in the world.

 

Prayers sent from Kentucky.

 

Quite the cutie. I have two boys 6.5 and 5.

 

Yeah I think Lilly is a keeper!!!!! She's a daddy's girl to boot. Oh darn!! LMAO
I know the doctors are confident and all should go well. It just hurts to see a child let alone your own go through all of what Lilly has. She's a tough little girl and that helps her.....

 

As of today we're clear for surgery. She went in for pre-op today and got the ok. It's still a week away and we have to keep her healthy until then.

 

She's like a little pixi! Regardless what happens all of you are better for having her in your lives...Godspeed.

 

That's a real D L G you have there; Daddys Little Girl. I have one of those too, only she's about to turn 20 in less than 2 weeks, and has been blessed with good health since the day she was born. I remember when Hugh Hefner hosted Saturday Night Live; he came onto the stage singing, Thank Heaven For Little Girls. It was funny, but nothing could be more true. Hang in there Lilly, you are destined for great things. Butch/56sedandelivery.

 

Prayers sent. This coming from a "Lilly" owner as well!!! Mine was 6 July 19th. Way to stay positive. I am sure she feeds off it from you and her momma.

 

Praying for your litle girl.

 

Prayers for Lilly. She is a cutie, hope all goes well.

 

Prayers sent .. Hope everything goes great!

 

Live life to its fullest.

Prayers sent for you and your family, hope surgery goes smoothly.

Godspeed
MrC.

 

That's a beautiful girl! God bless Lilly and Family!

 

Thanks again everyone. She is a little angel in our lives. I'll be sure to let everyone know how surgery goes. Thanks again my friends!!!!