First I want to remind you all to wear your purple in November for Epilepsy Awareness Month. We'd like to turn the world purple for the month of November!
So far this month Luella has had four seizures - two of those just in the last week! I'm hoping we can finish out the month seizure-free. There will be lots of excitement on Halloween... so we'll see.
Thankfully Luella was able to celebrate turning FOUR without a seizure to get in the way!! She has been so excited for her birthday and we were thankful for answered prayers for a fun day. Awhile ago I asked Luella what kind of birthday cake she wanted. I was getting myself prepared to make her a Belle cake since she is so into Princess Belle, but she wanted a "rubber ducky cake". She had a pink ducky cake for her first birthday so I really didn't want to do that again. I decided to incorporate the rubber ducky into a different fun cake. She loved it. When I showed her the fondant duck I sculpted she whispered "I want to eat it!!" And she did... at the party and we only let her eat the head then we cut her off... just a bit too much sugar!! It was great to have family and special friends here to help her celebrate. Hard to believe our "baby" is four! She is already announcing that "after four I be five"!! Let's hang onto four for a little bit Luella!!
Luella's 4th Birthday
Making a wish!
The beak is gone!!
Luella was also excited to get to see Sesame Street Live this month! She loved seeing Elmo and all the Sesame Street Friends!! It was a special outing with just mommy and daddy!
Thank you everyone for your prayers today! Luella handled her procedure today really well! There definitely were some tears but it was nothing like the last time! The test showed that there still is some reflux on left side but it has improved. The doctor felt that Luella is doing so well that there really shouldn't be a need to repeat this test again unless she starts having more problems with UTIs or bladder issues. She's been off of her daily antibiotic for 10 months and in that time she has not had a UTI and we hope that continues! She will have an ultrasound of her kidneys in about 6 months to see how her kidneys look and hopefully after that we'll get the all clear! :-) Luella was very glad to be heading home today! I couldn't help but take some pictures today - she was being just too cute! I thought I'd share with you. Thanks again for all your prayers!
Child Life brought in some dolls to pass the time while we waited for them to put in the catheter. Luella was excited to find a Cinderella and a Snow White. ... a little disappointed there was no Belle though.
We passed a little more time by playing hide and seek. Isn't this just the cutest little "hider"!?!?
Luella all strapped and "sandwiched" in place for the test.
Luella was excited to find an Elmo drawing board in the room while waiting to see the doctor for the test results. She drew "Elmo with big teeth"!!
After the test and appointment we finally had lunch. Luella celebrated with her own tiny can of apple juice. She thought it was so fun! Cheers! :-)
I have been doing monthly updates lately but here we are well into October and I'm behind!! September was a fun and busy month and pretty good seizure-wise also. Luella only had three seizures in September and they all resolved on their own without the need of her rescue med! We were fortunate to have a couple longer seizure-free runs in September - one 11 days and one 15 days! I can't say that we feel free to go anywhere or do anything with Luella - there is always that thought of when the next seizure will happen - but it is less stressful on our entire family when we can go out as a family and enjoy spending some time together without Luella having a seizure! I have gotten a little out of my own comfort zone and have done some things I probably wouldn't have done with Luella in the past. We walked though a corn maze as a family and Luella and I took an hour long bus trip to a pumpkin patch! September was a lot of fun!
Luella started ECFE (Early Childhood Family Education) again. She is so excited to be back at school. ECFE is just once a week for 1 1/2 hours and I am there with her most of the time - the parents do separate for a short time to the next room so she gets her time at school without mommy too! :-) A MOPS (Mothers of PreSchoolers) group has started in our area so Luella and I have been going to that as well once a month. Grandma Johnson goes with Luella to help keep an eye on her. It's so fun to see Luella get excited about going out and watching her play and interact with other children (besides her siblings).
I would like to ask that you keep Luella in your prayers this week as she goes to our local Children's Hospital on Tuesday for a procedure to see how her bladder reflux is doing. Luella has vesicoureteral reflux (VUR) - something we've known about since her first few seizures were triggered by UTIs. She was tested then and diagnosed with VUR. Bascially Luella's urine backflows to her kidneys which can cause frequent infections. On Tuesday she will have a nuclear scan done to see if things are improving. She will have to have a catheter and a radioactive tracer will be injected into her bladder and then they can watch to see where the tracer goes. The last time Luella had this done there was some improvement on the right side so we are hoping to see that on the left side this time. Typically children outgrow this type of reflux but if they don't surgery may be required. This is not a pleasant test. Luella screamed the entire time last time she had this done. That was in May of 2012 so I'm hoping that since she is a little older I can better prepare her for it and it won't be so bad. Please say a prayer that things go well for her!
Also I wanted to give you all a heads up that November is Epilepsy Awareness month! Get out your purple and wear it as often as you can!
Below is a short video slideshow of some pictures from September.