11/05/09 WOW!!!! I have not updated this for a long time. I must update you all. The golf outing was a BIG success. We raised $20,000. and we were really pleased with that amt. Thanks to all of the volunteers and golfers for making it a huge success.
We have been fortunate enough to stay away from the swince flu. Lukie and Logan did get the stomach flu 1 1/2 months ago and Lukie was hospitalized due to dehydration but other than that we have been pretty healthy (knock on wood).
In just a little over a month we will be traveling to Disney World for the MPS Society Family Conference. The conference is 2 days and after that we will be spending 3 more days in the Disney parks. Just me, Juan and Lukie are going. Logan has hit the terrible 2’s and is sooooo independent that he would be very unhappy in a stroller at Disney. THis will probably be Lukie’s last trip to Disney so Juan and I plan on making it very special for him. We want to create some wonderful memories. Lukie loves Santa and holiday decorations so this should be great. I can’t wait to see his face when he see all of the Christmas decor. We were in Walmart the other day and of course they already have up their Christmas trees and Lukie said “Christmas Tree”. Gotta love it. He is just the best little elf.
I actually wrote an essay about Lukit to the MPS Society and we won a scholoarship which will pay for our conference fees, our flight and our hotel so HOORAY!!!!!!
Thank you for checking the website and staying current on Lukie and our family.
6/30/09 We are getting excited about the golf outing which will be held in less than two weeks (July 11th at Utica Golf Course in Oshkosh). We just went to Iowa this past weekend and Juan played in the Montgomery’s golf outing. We had such a nice time visiting wiht the Montgomery family and their girls and their sone Lucas who is 11 and has Sanfilippo. It is always so healing to hang out wiht Stacy. She makes me fell like it’s going to be okay.
Logan just turned one a week ago. How time flies. Lucas is now in summer school and is doing great. He is at Webster Stanley m-th from 7am -12:30pm. Summer school is great for him.
3/27/09 We just returned from the University of Minnesota. We were able to get into the Sanfilippo Clinic and see Dr. Whitley. He said that Lucas looks very healthy which was nice to hear. He is plainning on doing a new genestien trial ( a drug that may slow down the progression of Sanfilippo) but we will not know for 3 weeks if that study will get funded so we are waiting again. We are also waiting for Children’s in Milwaukee so tell us if Lucas skin cells reacted to the Miglustat trial. I have to say that I am sick of waiting. Time is running out. But for now we will just enjoy Lukie and all that he has to offer.
Logan is becoming quite the little brother. He loves Lukie so much. He and Lukie like to hold hands and laugh at each other. It is so fun to watch them interact. Logan just had his first ear infection and of course I start to panic and think the worst but honestly most kids do get ear infections so I need to just calm down.
Lucas is still enjoying school. His teachers say that he is a delight so I am nto sure what is goign on at school but I am proud of him and his behavior.
I will keep you all posted. Thank you for checking in on out little bear.
1/14/09 Happy New Year and Happy birthday to Lukie. He turned 6 on Jan 2nd.
On Dec 23rd Children’s Hospital called and told us that there has been a delay in sending his skin sample to Boston. There were a bunch of legal issues but apparently they got resolved that day. Anyway, while his skin cells were growing ,the hospital in Boston may have found another drug that could treat him so when the skin is sent, Boston will test the skin with 2 different drugs now. I guess there was a delay for a reason. We are now just waitng to hear what happens. Keep your fingers crossed.
Lucas had a wonderful winter break. He stayed healthy the entire break. We had a wonderful New Year’s celebration in Madison at the Blackmore’s house. Then when we got hom from Madison we had 3 birthday parties for Lucas. What a lucky boy.
We had his IEP at school on Monday. His teachers say that he is a loving, gentle, kind boy at school. What the heck happens to him when he comes home? His principal said that there are no plans to close Lincoln school as of now so that is good.
Caitlin continues to come over each morning and most afternoons to care for Lukie. She does a great job and she is a blessing.
11/26/08 We had Parent/Teacher conferences last week and Mrs. Fox said that Lucas is a wonderful boy and she enjoys having him in class. He understands the routine and seems to enjoy school. She also said that Lucas is the best dressed boy in school so you know that makes mommy happy. She called him a tend-setter.
Lucas was up last nite and was not able to breathe. We gave him a sinus flush at midnight and he woke up again at 5am with blood dripping from his nose. I hope that this does not turn into a sinus infection for his Thanksgiving break. Poor Lukie!!!!!
11/13/08 Lucas is continuing to well in Kindergarten. We have parent/teacher conferences next week so we will see how that goes. He seems to be happy getting on the bus each day. The bus ride home is 1 1/2 hours long so that is a bit unbearable for him but he is a trooper and is managing. He likes to take his shoes off on the bus so that kinda tells me that at the end of the day he is ready to relax.
Caitlin (our helper) and Lucas are still getting along great. He seems excited to wake up in the morning and greet her.
We are still waiting for out test results from the skin biopsy taken in Sept to see if Lucas will start the trial drug Miglustat in January. The doctors said that we would find out the results sometime after Thanskgiving. Please pray that Lucas is able to start this exciting treatment.
10/09/08 It has almost been one month since the walk has taken place and we are still receiving checks in the mail….WOW! For those of you who may have missed the walk it was another HUGE success. We had about 325 walkers and raised $40,000. It was a beautiful day and everything went so smoothly. The kids enjoyed the fire truck and the clowns and the band. We were honored to have the Sowden family (they have 2 Sanfilippo boys) from Michigan attend the walk. We also want to thank those who traveled from do far to be with us: Aunt Kelly and Uncle Kirk, Uncle Deek, Greg Evert, Hechel, Joanna, Kelly Mattson, Aunt Sally, and anyone alse who I may have missed. It is just a nice excuse to get together.
Tonight I am meeting with the Moose club from Fond du Lac and they are looking into doing some sort of raffle for Lukie’s Legacy. I will present at their meeting and they will vote on the cause. I hope it goes well.
Lucas is still doing well in school. I went with him on his field trip to the Little Farmer a few weeks ago and we really had a nice time. He goes to the gymnastics center every other THursday and he really likes that too.
I went back to work on Oct 1st and it was very hard. I miss baby Logan every day but I am trying to get back into the swing of things. My co-workers have been wonderful so that makes it better.
09/09/08 Lukie is doing very well in kindergarten. Mrs Fox calls me now and again to tell me not to worry…he is fine. I can’t help it. For the past 5 years I have known about his every move and know I feel like I am in the dark. The best thing about school is that Lukie is very tired at night. Hooray!!
Logan is still just a wonderful little brother. He likes to watch Lucas run about the house.
1 1/2 weeks until the walk. YIKES!!!!!!!!!!!
09/02/08 Today was Lukie’s first day of Kindergarten. Although I was very happy to get Lukie off to school I cried as I will not know exactly what he is doing through out the day. Losing control of Lukie scares me and it was so hard to walk away from him this morning at school. He seemd a bit comfused and I just hope that he is okay.
All of the kids in the neighborhood came over a got their picture taken with Lucas before he went on the bus. I t just brought tears to my eyes. He is so loved and we are so lucky to live in such a supportive neighborhood.
Logan slept through the nite for the first time last nite. Things with him just keep getting better and better.
08/25/08 The Summerfect at Northpoint was a HUGE success. The weather was perfect and we all had a great time. Thanks so much to Keri and Tammy for all of your hard work.
Last nite we had a little play group at our house and Lukie was tired but still managed to save some energy for the jump house. We had Caden, Hailey, Emma, Lauren, Jack and our new friend Tyler over. All of the moms had a nice time catching up and the kids were well behaved. It was a great evening.
The t-shirts are ready to be printed and so are the CD’s. Things are really coming together for the walk. I am getting nervous and excited all at the same time. I am looking forward to seeing my family from Chicago and most of all I am looking forward to seeing my sister as she has not even seen Logan yet. The walk is so wonderful for the fact that it brings all of my family members to Oshkosh.
Tomorrow is open house at Lukie’s new school and Aunt Heidi is going to come with me and Lukie. It should be a fun time. I also want to post that our good friend/pet Lucy ( or Juicy as Lukie calls her ) has passed away. We are so sad. She will definately be missed by Eric and Heidi and all of us. We love you “Juicy”.
08/20/08 One month until the walk!!!!!!!! YIKES. We have the posters and pledge sheets in so if anyone needs a poster or pledge sheet please let me know.
Since Lukie had his tubes put in his ears he has been doing great. He seems to sleep so nice now. Gotta love tubes. His allergies have been under control (knock on wood) and I think that has helped him too.
So, in less than 2 weeks Lukie starts kindergarten at Lincoln school. We have registration tomorrow and an open house next week. We hope to go back to school shopping on Friday whih should be fun. I think Lucas will miss Mommy and Logan while he is gone all day but I think this will be good for him. He seems to be getting bored. There are only so many times that Memonemee Park is cool.
Logan is still the best baby ever. We have his 2 month appt tomorrow and I will be interested to see how much he weighs now. We finally found an in home daycare for him whcih means that I am offically going to have to go back to work. BOO!! The daycare seems to be great so I think that things will work out fine.
08/04/08 Oh I have been wanting to update for some time now and I have finally gotten the chance to do so today.
On Thursday June 19 at 5:42am we welcomed Logan Derek Valdez into our family. He came one month early but still weighed in at 7.10. He was a premie and his lungs were not developed so he had to spend 17 days in the NICU at Children’s hospital in Neenah. He is now home and is just the best baby ever. We are blessed and Lukie is a pretty good BIG brother. HE likes to smile and Logan and touch his feet.
Things have been crazy at our house!!! Logan has taken up alot of my time as well as getting our house ready for EAA. I have also been working like crazy getting ready for the walk. This past week we were on vacation during EAA. We spent 5 nites at Grandma/pa Valdez’ new house. Lucas was so happy there. He could run and jump in his jumping house and he rode on the 4 wheelers alot. We also went to the NEW zoo in Green Bay and he had a great time there. We went camping for 3 nites and the baby did great and of course Lukie loved every minute of camping. He is a HAPPY CAMPER for sure. We went with the Seckar’s the Koeppen’s and the Blackmore’s and all of the kids just had the time of their lives.
Today Lukie had T-tubes put in his ears. The surgery went well and Lukie did great but he did get sick after the surgery was over and he is now just resting in the living room.
06/12/08 HAPPY BIRTHDAY MOMMY!!!!!!!!!! Yes, I turn 29 again today!! Ha!! Happy B-day Jenny Wilka and Happy B-day Emma Marino!!!! June 12th is a great day.
Lucas is done with school for the summer. Monday was his last day and we were sad to leave Miss Lisa, Miss Tina and Miss Jean as they have all been so special to Lucas. He definately loved Traeger and we can only hope that he loves Lincoln as well. Juan and I went to Traeger on Monday and thanked all of the staff there for their special care with Lucas. We made brownies and the kids loved it.
Lucas had an horrible ear infection last week and this week so we took him in to the dr. again as he was placed on oral antibiotics last week and this week the dr. decided to give shots of antibiotics which seemed to speed up the recovery process. He is all better now which is good becasue he will be camping this weekend.
06/02/08 Baby Valdez will arrive on June 24th at 10:30 am. I can’t wait.
Lucas had a crazy weekend. He played lots with the neighborhood kids and our friend Wyatt and he also got to visit with both sets of grandparents. On Sunday we went ot grandma and grandpa Valdez’ new house and Lukie took a tumble down the basement stairs and has a nice egg on his forehead. Thank God he was not seriously hurt. It was awful but he got back up andwas ready to ride on the 4 wheeler with Grandma and also jump in his new jumping house.
HAPPY BIRTHDAY AUNTIE LEEANN!!!!!!!!!!!!!!!! Today LeeAnn turns the big 33. We are so appreciative of all that LeeAnn has done for us this year. She is truly a blessing is Lukie’s life.
05/23/08 Our dear friend Bonnie passed away today after a short battle with cancer. Our thoughts are with her family. Bonnie will be missed by us.
05/19/08 We went to Iowa this past weeknd to attend a MPS Golf Outing hosted by the Montgomery family. Here is their website: http://www.caringbridge.org/visit/hopeforlucas It was a great event. They had 80 golfers and about 95 people for lunch. Daddy golfed and Nana, Grandpa and Mommy hung out and helped get the lunches ready. Lucas played and played with the Montgomery girls and had a blast. He may want to move to Iowa now!!! I will try and figure out how to post pictures of the event on this website. MPS awareness was raised as well as $ towards finding a cure. It was a HUGE success and the Montgomery’s should feel proud.
05/15/08 Today is National MPS Day!!! We are supposed to think of those whom have died from MPS as well as celebrate those who are still living andfighting this terrible disease.
Today Lucas wore his Lukie’s Legacy t-shirt to school and brought snacks for his class to enjoy.
This weekendwe will be traveling to Iowa withmy parents to attend a MPS Golf Outing hosted by the Montgomery family ( the Montgomery’s have a 10 year old named Lucas who has Sanfilippo).
The Valdez family dooes not think of MPS only on this day but every day. Please take a moment to think about our precious son Lucas today.
Thanks!!!
Jill, Chris and Lucas
05/14/08 Happy birthday Uncle Eric and Uncle Deek!!!! On Monday Lucas had allergy testing in Neenah. He did not like it at all as he had 86 pricks to the back and 17 on the arm. He screamed and cried and actually bit Daddy on the chest but we are glad that we did it as we now have a list of about 30 things that Lucas is allergic to. Mostly different types of grasses, trees, weeds and cats. The entire testing process took 3 hours. Lucas is now on two different type of nasal inhalers as well as an oral med that that is to be given in the morning and at bedtime.
Last nite we had our 2nd Lukie’s Lagacy meeting and many people showed up to give their support. Things are really moving along and I am so grateful for such a wonderful, helpful committee. Lisa is doing a great job of organizing everything. We are lukcy to have her in our lives.
Lucas’ little brother should arrive in 6 weeks. HOORAY!!!!!!
05/01/08 Lucas has been sleeping trough the night at least 1-3 nites a week since I last posted. This is still better than nothing I guess.
We had out ultrasound last week and my placenta did not move up so this means that I will be having a c-section the last week of June now. I am not thrilled about this but as long as the baby is healthy I will be fine. Now we will be able to plan for where Lucas will go and who will watch him as we are in the hospital.
Happy birthday Wyatt!!! Lucas was singing “happy birthday” in the shower this am so I think he is excited for Wyatt’s upcoming b-day party this weekend. Bring on the jumping house!!!!
04/21/08 I can’t believe I am typing this but Lucas has slept through the night for this entire past week. I honestly think that the last time he slept through the night for a week it was probably 2004. WOW!!! It is amazing what a little sleep can do to a person. Lucas wakes up pretty happy and I must tell you that I am like a new girl!!! I love it and I just pray that it continues. I can’t get too used to it though as we only have 2 more months until the baby comes and we all know what that brings….sleepless nights again for mommy!!!!!!
04/17/08 Happy Birthday Grandpa Boomer and Great Grandma Smolinski!!
Well, spring has sprung and that means that so have Lucas’ allergies. He has had such horrible allergies this year (probably because it has been so windy). Poor little bear. We have switched his allergy meds back to Zyrtec and have made an appt to see an allergist on May 12th. For the time being he is ok.
Lukie’s Legacy is going ull speed ahead. I have finished creating the Company Sponsor letter andwe are all ready to send them out. I hope that the response is as great as last year.
I have an ultrasound next Wed. to check on my placenta. Hopefully it has moved up which means that I will NOT be having a c-section. So far this baby has been very active during the day and sleepy at nite. Let’s hope that means good things. Lukiefinally said that word "baby" the other day so I hope that he is coming around to the idea of having a little brother share his spotlight. HMMM!! Time will tell. But, for the most part he has been pretty good with our neighbor Hailey and she will be turning 1 in a few weeks so we will just chalk this past year up to practice for Lucas.
04/01/08 I hate Sanfilippo. Lucas is having such a hard time sleeping at night. He sleeps for a few hours, is up for a few hours and then sleeps for a few more hours. It is very hard on the Mommy!!! Pleasepray that we get some much needed rest at our house.
We are having our first Lukie’s Legacy meeting today. Can’t wait to get started again. We have such a great committee!!!!
03/26/08 Lucas was sick on Easter again this year. He woke up in the middle of the night with a high fever and his face was swollen. He was very tired the entire Easter day so we did not go to Nana’s or Grandpa’s. He seemed better at night but then we had the same reaction in the middle of the night again on Sunday night. On Monday I took him to the dr. andhe was diagnosed with an ear infection. Since he has been on antibiotics for his remaining sinus infection for the past 2 weeks, the dr. gave him an antibiotic shot in each thigh in hopes that it would speed up his recovery. Well, he slept 10 hours last night so I was pretty sure that he was cured. We went to the dr. today and she said that his infection was better but was not gone so he was given 2 more shots and tomorrow Daddy has to take him in to get checked. He will most likely have 2 more shots tomorrow to be on the safe side. Poor Lucas. He hates shots and likes to over recact andwalk around peg legged until he forgets about the situation. What an actor!!!! He must get it from his father.
03/19/08 Well Lucas seems to be feeling great these past few weeks. We had a dr. appt a week ago and the dr. said that she found a few different types of bacteria in the culture that she took so Lucas is now on antibiotics. He will have one more follow up appt. in a few weeks.
The weather is getting nicer and we have been outside alot. Daddy and Lukie have been spending most nights in the hot-tub. "Dancing withthe Stars" is back on tv so Lucas has been a happy boy watching that at night. He really thinks he is on the show or something. It is cute to watch him.
We got a call last nitefrom our friends in Iowa witha Lucas with Sanfilippo. They are having a gold outing on May 18th to raise money for the MPS Society andthey have invited us to attend. We are very excited that we will fianlly be able to go to Iowa and support them. They have come to WI so many times to visit us and it will be nice to go see their Lucas in his environment.
Happy Easter. We will be going to the Children’s Musuem with the Seckars, Blackmores, Koeppens, and Royals on Good Friday and then on Sat we will go to the South Park Easter Egg Hunt and then to the Koeppens for another egg hunt andbreakfast. Lucas is going to have a fun filled weekend withlots of activities with his friends.
03/01/08 Yesterday was ALOT harder than Juan or I expected. Lucas basically slept from noon (when the surgery was over) until 5:00pm with horrible spells that awoke him thrashing about and crying. When he would wake up like that he would have blood gushing from his nose and mouth. He would also throw up blood too. It was the most horrible sight that any parent can ever have when your child is covered head to toe in blood.
By 2:00am this morning Lucas woke up and had a cup of applesauce and a popsicle. He kept it down and even ate a breakfast of eggs and applesauce this morning. He is feeling much, much better today. He is pretty much back to his naughty little self andthat is okay with us after what we witnessed yesterday.
When we got home this afternoon we were pleasantly suprised with lots and lots of ballons in the kitchen from AUntie LeeAnn. Jason, Julie and Wyatt brought lots of yummy food. Thanks guys!!!!
Thanks to you all for your calls and concerns. I think that we are going to be alright.
02/29/08 The dr. just came out andspoke with us. Lucas is finally out of surgery after a little more than 2 hours. He did really well. She said that she cleaned out his sinuses and opened up two different areas so that Lucas can drain alotbetter now. She is taking a culture of his infection to find out the type of infection that he keeps having. It was not a huge infection but just a persistent infection so she is sure that he will probably be prescribed antibiotics next week. For now he will be on some pain meds tht can make him sleepy (hooray).
Juan and I are still waiting for his breathing tube to be taken out and then we can go back andsee him. Thank God all is okay. I can finally take a breath nowand stop all of my crying!!!!!
We will come home tomorrow morning if everything stays good with Lucas.
Thank you for your prayers. We needed them.
PS. We had the baby’s ultrasound yesterday and he looks perfect. He is measuring out at normal size so far so hopefully he won’t be so big. We will do one more ultrasound in June to see the size of him (there is still a good chance he could be a big boy) and then we will go full speed ahead.
02/29/08 We have been in the waiting room for one hour now and I am a bit nervous even though the surgery should take 1 1/2 – 2 hours. Lucas was a real trooper yesterday. He had a CT scan and was put out for that. He awoke and was pretty sleepy for quite a while but when we got to the hotel and he started to watch his movies he perked up. Then Jenny and Jack Wilka came to visit, swim andgo out to eat withus. We had a great time withthem. Poor Juan had to hang out with TWO pg ladies. Oh well!!
I will update again as soon as Lucas is out of surgery. Thanks for all of the well wishes.
2/27/08 HAPPY BIRTHDAY DADDY!!! Juan is the big 35 today. Lukie woke up at 6:30 and sang happy birthday to Daddy without either one of us even telling him that it was Daddy’s birthday (although I have been making him practice for a week now). It brought tears to my eyes!!!!!
Tomorrow we have a big ultrasound at Theda Clark and then we are off to Milwuakee for Lukie’s 2 dr appts. Then he will finally have his surgery on Friday!!!!
02/19/08 NO SURGERY TODAY!!!!!!!!! Mommy is an idiot!!!!!! I fed Lucas a few little bity bites of a waffle this morning for breakfast. Juan came downstairs and reminded me that Lucas is not supposed to eat. We went to the hospital and after a bit they decided that they could not do the surgery due to my mistake. I feel horrible but not as bad a Lukie does. He NEEDED this surgery today and now it looks as if it won’t happen until April. So, basically life sucks for us once again. What’s next???!!!!!
02/14/08 Happy Valentines Day!! Nana came over tonite with a big bag of gluten free treats for Lukie and he loved it.
I am still feeling very good. We have a high tech ultrasound on Feb 28th and we are excited to see our baby boy again. I showed Lucas my BIG bare belly today and he does not seem to like it. He sure does like to lay on it though. Perhaps he knows!!! HMM!!
Sad news….Auntie LeeAnn’s dog Sadie passed away on Monday. We are sooo sad. She will be missed by us all but especially Lucas. He loved Sadie so much. It was always fun to watch a little boy try andtake a St. Bernard for a walk. He has so many fond memories of her. We will keep her picture in his room so that she will not be forogtten.
Please pray for our friends/family Bonnie and Kari as they were both diagnosed with two different types of lung cancer. We have been thinking about them daily and we hope that they can BEAT this horrible cancer. We love you!!!
Lucas has his sinus surgery next Tuesday Feb 19th. I am sooo scared but I know that this will help him. He has notbeen able to sleep well for the past month. Poor little bear. He needs relief!! We will be staying at Children’s hospital over nite on Tuesday nite and will hoepfully return sometime on Wednesday!!! Wish us luck!!
01/17/08 EXCITING NEWS!!!!!!! Lukie is going to have a little baby brother at the beginning of July. He is healthy (no Sanfilippo) and we are just sooooo excited and can’t wait for our newest family member to arrive. I have been feeling GREAT which helps.
Last weekendwe went to the Kalahari in WI Dells with the Montgomery Family from Iowa (they have a 10 year old named Lucas who has Sanfilippo) andwe had a terrific time. I will post pics of our trip just as soon as I have a little more time. Anyway, their teenage girls just loved playing with and entertaining Lukie and he loved it too. Lukiealso liked holding hands with the other Lucas. It is weird, but they seemed to look at each other andhave a special connection with each other. It was just wonderful to watch the 2 of them interact. Lew and Stacey, the mom and dad, we are blast. We even got to have some adult time while the girls watch the Lucas’ and we went out to dinner and then to a club. FUN TIMES!! We miss the Montgomery’s already and can’t wait to see them again soon. We are hoping that they can join us at our Sept 20th walk a thon this year.
01/02/08 HAPPY 5th BIRTHDAY LUCAS!!!! Well, Lucas has not been healthy lately but hopefully 2008 is going to be his year. We went to Madison to visit our friends on Friday and on our way home on Saturday Lucas got REALLY sick and threw up for 3 days. He was admitted to the hospital on New Year’s Eve because he was so dehydrated. We spent the nite at Theda Clark Children’s Hospital and on Tuesday afternoon we came home. Poor Lukie was hooked up to an IV for 24 hours but it did the trick and he seems to be better today. He and Daddy are staying home today (just to be on the safe side) and then he will go back to school tomorrow.
HAPPY 2008!! Let’s hope it’s great!!!!
12/29/07 The past 2 months have not been the healthiest for our little bear. He has a sinus infection that he can’t seem to get rid of. We have an appt. at Children’s Hospital on Monday and they are going to do a CT scan of his sinus’ and then schedule him for a sinus rinse surgery. BOO!!!
Despite the horrible sinus infection Lucas did manage to have a good Christmas. He was his hyper little self all holiday long. Not sleeping much…but still full of energy.
Happy New Year!!!
11/06/07 Lucas was a happy Santa for Halloween. We went trick-or-treating all over the neighborhood and then drove all over visiting family and friends. ALL of the candy that he got we gave to a local dentist who is shipping candy to Iraq for the troops to enjoy.
This past weekend we went 4 wheeling at the cabin. Lucas has alot of fun. I will post new pics of these events soon.
10/09/07 Lucas went to the West homecoming game this weekend and wore his little West Wildcat t-shirt. He liked eating popcorn and watching football. We also went hiking this weekend at High Cliff and we had just the best weather. Lucas did not hike to much…he wanted to sit in his stroller and eat cheerios instead. He did like having a picnic lunch and playing football with Jason and Wyatt.
Mommy finally got all of the thank you letters printed and she hope to have them all mailed out by this weekend. WHEW!!!
09/26/07 We are back from Disney World and we had a terrific time. The weather was great (it rained one morning). Lucas really enjoyed all of the rides (small world, carousel, Nemo, Goofy’s rollercoaster, Dumbo, etc) and he loved swimming at the the hotel everyday. He also liked eating and eating and eating. The food at Disney was wonderful.
Lucas has been so happy since we have been home. I think he just felt so loved that week at Disney and he is still in a good mood.
09/15/07 The walkathonwas amazing!!!!!!!!!! We are so thrilled with the great response from the community. WOW!!! We were also happy to see Derek, Greg, Kelly and Kirk and Becky all home for the event. We are blessed to have such wonderful friends and family. It was just amazing to see all of the people who came. THANK YOU!!!! Lucas thought that the event was a birthday party for him and he kept waving to everyone as he was in his wagon andhe kept saying "happy birthday" over and over again. Heidi took such wonderful pics of the event. One of her pics ended up on the Wednesday’s front page of the Northwestern. The total raised is up to $55,000 and is still rising. Now I am working on getting the thank you’s ready. This is a huge task and I know that it will take me a few weeks to finish them. Juan and I have also been working on getting the checks registered.
I am trying to pack up everything today as we will be leaving for Disney World tomorrow. This vacation could not have come at a better time. Lukie is going to have so much fun.
09/05/07 Lukie started school yesterday and he had a terrific day. All of our neighborhood friends came out and watched him get on the bus. It was really cute. Lucas had a great day at school. Mrs. Brull seems happy to have him back.
Last Friday was Lukie’s last day at daycare. We will miss Ms. Lisa and Ms. Maggie. I wish them the best of luck in their careers.
Only a few days until the walk and I am getting nervous. We had a great article in the Northwestern yesterday. I am just praying for good weather.
08/27/07 Oh my goodness….less then 2 weeks until the walk-a-thon. YIKES!!!
Well, things are really starting to come together. Many, many phone calls from people wanting to walk have started to pour in. Our little Lukie is so loved.
Lucas’ last day of daycare will be this Friday. I am so sad because this is just another door closing for us. Lucas loves daycare and so so we but it is in everyone’s best interest to just have him go to Early Childhood and then come home. We are fortunate the Auntie LeeAnn has stepped up and volunteered to watch Lucas on the days that Daddy has to work. We are so proud of LeeAnn as she has just been a blessing to us whenever we need her love or support. What would we do without her?? Lucas is going to be so happy to step off the bus ans see LeeAnn’s face greeting her 2 days a week.
We had a nice weekendhanging out withour neighborhood friends. Lucas enjoyed playing with Caden, Emma, Bryce and Mandy. He just loves to watch the kids on the court play andhe tries to play withthem. If we could just get him to stop eating sand everything would be okay!!!
Open house is this Wednesday at Carl Traeger. We can’t wait to see Mrs Brull again.
08/15/07 Well, the time has come for us to find different care for Lucas while we are away at work. School starts in a few weeks and then Lucas will be at Carl Traegerin the mornings at his Early Childhood class, but when he is finished with his class we will need to arrange for someone to come to the house to care for him. This is a bigger struggle than I ever thought imaginable. I have tried calling several care facilities but they are soooooo expensive. If anyone out there knows of an in home care provider please contact me.
Last nite we stuffed the goodi bags for the walk a thon and then held a small meeting to talk about what is going to happen on the day of the walk. Lisa is my hero…she has everything so organized. I am sure everything will work out perfectly.
Tomorrow is the silent auction for Lucas at Northpoint Medical (our neighbor Keri’s workplace). We are so honored that they are doing a silent auction to benefit Lukie’s Legacy. Keri and her co-worker Tammy have been working so hard. I can’t wait to see what the turnout is. 
08/08/07 Lucas has been feeling better these days. We have an appt at Children’s on August 20th to see if there will be a surgical flush needed.
I joined his class on a field trip at Wild Air on Monday. Lucas and I had a great time climbing up the slides and sliding down. We also had fun jumping in the “jump house”.
Aunt Kelly turns 30 tomorrow. Lucas has been singing happy birthday. We mailed her present to Colorado and she will be happy to see that Lucas colored a picture for her. He misses her!!!
07/30/07 It has been a while since I have written. We went to Children’s and they took a swab of Lukie’s sinus infection andwe are still waiting to hear what type of infection he has. He is now on another medication which seems to be working this time. We will go back to Children’s in a few weeks to talk to the doctor about having a sinus flush done for Lucas. A sinus flush is s small procedure in which the doctor goes in Lucas’ sinuses with a scope and flushes out all of the bacteria.
We were on vacation all of last week while we rented out our house to EAA guests. We stayed at the Hunter’s house in Winneconne 2 nites, the Kalahari in WI Dells 2 nites, and we camped at Evergreen Campsites for 3 nites. Lucas was such a good boy throughout the entire vacation. He enjoyed Wi Dells and went down some waterslides by himself, he loved camping and going for walks and swimming in the pool and going down the waterslide, and he enjoyed staying at Eric and Heidi’s and playing in their fenced in backyard. It was a successful vacation but we were so happy to get home last nite. Lukiekept saying "I’m home" over and over so we knew he was happy.
07/18/07 Tomorrow we will be at Children’s Hospital in Milwaukee because our little bear is still soooo sick. He has just a horrible sinus infection and the pediatric ENT wants to take a lookat him to see if we can clear up this problem. We have to take his last CT scan results along withhis HIS panel results with us for the dr. to review. We are hoping that there is something that she can prescribe to clear this mess up. She prescribed a very strong antibiotic last Thursday andLucas had the diarrhea all weekend long so we took him off of the antibiotic. Poor little guy. He has such a terrible diaper rash.
On Sunday we will pack up to leave our home for a week as we will be renting it out to EAA visitors again this year. Lucas should be happy because we will be spending 2 nites at the Kalahari in WI Dells and 4 nites camping . We will also be spending 2 nites at Eric and Heidi’s house (oh their poor dog Lucy) and Lucas just loves when we visit them. Wish us luck on our adventure.
07/09/07 Our little man is not feeling so well. He has ANOTHER sinus infection. He did not sleep well last nite and he is just so stuffed up again today. Fortunately he is on antibiotics and that should start to work soon.
Yesterday we went to Zackie’s 4th b-day party. Lukie was so sick and did not have a very good time. We also went to a party at the Koeppen’s house andLucas was a little bit better there. He liked riding with Kensa in her motorized John Deer Gator.
07/02/07 Happy birthday Aunt Kris!!! Lucas has been practicing the “Happy B-day Song” for days so let’s hope he can perform for Kris tomorrow.
We just got back from 3 nites of camping and I must say that Lucas did great. He slept until 7:30 two of the mornings so that was good. He swam in the pool and played in the spashpad every day. He did not love the pool as much as he normally does and we think that he may be spoiled by the warm water in his hot tub. He did enjoy eating lots of goodies andgoing for walks aroundthe campground. He also played on the playground which was right across from our campsite. On Saturday nite we went to the the Princeton firework show and it was pretty good. Lucas liked watching the fireworks but he did not like the big booms that it made. We may just skip the rest of the firework shows this year and do our own on Bennett Court.
We are searching for a new stroller. This camping trip made us realize that we are in need of a stroller that can go through gravel and sandso we are looking for a jogging strolled that will hold our big boy. We will be camping again in 4 weeks so we will see what we can come up with.
Happy 4th of July!! Wednesday is the annual Tollard family reunion. All of the Lukie’s Legacy posters andbrochures are done so I hope to pass out quite a few to our many extended family members. We are still holding out hope that a cure will be found soon as each day for Lucas is difficult. God bless our little man!!!!
06/25/07 I am back from NY and I had a great time. Lukie was such a good boy while I was away (perhaps this means I should go on more trips). He was very happy to see me when I returned and he was even happier to receive a Superman t-shirt and a I Love NY t-shirt.
On Wednesday the hot tub was all set to go and ready for full use. Lukie went in and had the BIGGEST smile on his face. It was priceless!!! We have been using the hot tub once or twice a day since it was installed. Lukie has been sleeping later since the hot tub arrived. Once day he even slept until 7:35 and it was just wonderful.
This past weekend we went to Menominee Park for Lukie’s cousin Ashley’s graduation party. As soon as we pulled intothe park he started saying "horsies, lamas" so we went to the zoo and he ran right up to the horsies. He also played at Little Oshkosh for a while.
On Sunday we went to a "Back from NY" party at Reed’s house. Lukie was rather unfocused there but did manage to go in the little pool for a bit. Then we went to a party at our neighbor Samir’s house. LukieLOVED playing with Samir’s beard andliked running around with all of the neighbor kids. It was great to meet some of the neighbors that we haven’t met before.
Tonite is the Make-A-Wish party where we will all celebrate the hot tub. It will be great to thank all of the poeple who have donated so much time and money. Looking forward to a wonderful nite.
06/11/07 Happy Birthday Mommy!! (29 and holding) Lukie andMommy had a wonderful weekendtogether (Daddy had to work all weekend). We played outside alot and Lukieeven went in his little wading pool. We also went to the park with Jason, Julie and Wyatt and rode the train and the whip and we went to the zoo to visit the ba ba black sheep.
I leave for NY on Friday ( I will be gone for 5 days) and I am a little nervous. I will miss my little bear so much and I just hope that he is okay without me. I am sure that Lukie and Daddy will have little parties every nite without me.
NY city or bust!!!!!
06/04/07 Happy Birthday Auntie LeeAnn!! Lukiesaid "Happy Birthday" to LeeAnn on the phone on Sat and it was so cute. We had an interesting week. On Tuesday we went to Children’s Hospital in Milw and reviewed Lukie’sDNA test results. The lab in Georgia was able to find the two chromosome mutations which caused him to have Sanfilippo. It is good that they we able to find these mutations because this can give us a chance of having a healthy baby sister or brother for Lukie someday if fate allows. We also went to a pediatric appt in Neenah on Tuesday and Lucas had blood drawn to test his immune system. Let’s just say that Mommy, Daddy and the two nurses all sweat off about 5 lbs trying to hold Lukie down. His blood we not drawing very well so we had to take it from 3 different areas just to get 2 ml.
This past weekendwas very rainy but we did manage to play outside with Wyatt on Saturday nite. We also went swimming at the YMCA on Sat afternoon.
On Sunday Lucas got new shoes and lots of new clothes. Hooray!!!
This is the last week of school. We will miss Mrs. Brull, Miss Susan and Miss Tina. Have a great summer vacation.
05/29/07 We had a nice long weekend. Daddy had to work but Lucas and I managed to go to Menomonee Park with Aunt LeeAnn. They now have mini horses so Lucas loved that. He also played at Little Oshkosh for a while. We also went to the cemetary and visited Grandpa Chester. It was very peaceful there.
On Sunday we went to a party for TJ (he is recovering from cancer) and Lucas was not excited to be there. There was not much for him to do so he did alot of wandering.
On Monday we went to the Memorial Day Parade but Lucas thought he saw Santa and FREAKED out. We had to leave right after the parade started. At night we went to Reed’s house for dinner and we played baseball and football in the backyard.
Only 2 more weeks of school left!!!!
05/21/07 We had such a wonderful weekend as a family. Lukiesaid a few times "my Daddy is home" which brought tears to my eyes andyes Daddy was home so that made our weekend so much fun. We played outside on Friday nite andmost of the day on Saturday. On Sunday with Mommy and Daddy went to Milwaukee to watch Aunt Kelly get her master’s degree in social work from UW- Milwaukee andLucas stayed home with Grandma andGrandpa Valdez. This week is "sports week" at daycare so I am sure that Lucas will love that. Tonite is Landin’s b-day party at McDonald’s in Appleton. FUN!!!
The bad news is that Lucas did not sleep well last Thursday night andagain on Sat night. Some kids with Sanfilippo sleep only 3-4 hours a night and Lucas has started to join that club. Let’s just hope it was a fluke or something.
05/14/07 What a wonderful weekend. Lucas made a terrific Mother’s Day card for me and he got me flowers and new floor mats for my car. What a kid!! On Saturday Lucas went to a horse farm and Aunt Patti and Uncle Jeff, Grandpa and Nana, Aunt Sally from Chicago, and Chris, Kelly and Tristen all joined us. Lucas rode on a mini horse as well as a big horse named Tater-tot. Check out the pic on the photo page.
On Sunday Lucas went to church with me andhe actually went to the drop off child care center (because his favorite babysitter Sam was working in the room). On Sunday nite Aunt LeeAnn and Grandma came over and we had pizza and took Mac for a walk.
04/30/07 Lucas has been a bit crabby this past week but hopefully all is good now. On Friday he was very crabby at daycare so I picked him up early. On Sat Grandma Valdez babysat in the am and Aunt LeeAnn and Aunt Kris babysat in the afternoon. At night we went to Waytt’s 3rd b-day party.
On Sunday Lucas and Mommy played outside most of the day. It was wonderful!!
04/23/07 Hello!!! We went to WiDells this past weekend andhad a blast. We stayed at the Wilderness Lodge with the Seckar, Koeppen, Wilka, and Blackmore families. Chelssee, Eion and Mena also came to visit. Harper Blackmore turned one and they had a Backyardagain b-day party at their hotel room and Lucas was sooo excited because he loves the Backyardagains. We had lots of fun swimming and swimming andswimming. It was such a nice weekend that we actually spent lots of time swimming outdoors too.
04/18/07 Yesterday was Granpa Valdez’ birthday andLucas had a great time singing "Happy Birthday" to Grandpa. He also helped him open his presents andcards. He was very excited to play with Mac and Sadie (the family dogs) and he got a little too excited at times. Granpa made a ham on the grill and Lucas loved eating that.
This weekendwe are going to WI Dells with Lucas’ friends Reed, Kensa, Jack and Henry. It should be alot of fun. We are staying at the Wilderness Lodge. Looking forward to some hot-tubbing.
04/09/07 – Happy Easter!! Lucas had a pretty good Easter. We went to the Oshkosh Easter Egg Hunt on Sat (in the snow) and we also went to another hunt at Lukie’s friend Reed’s house. Lucas did not sleep well on Sat nite (he was awake from 11pm – 5am) so we did not make it to church. We went to Nana and Grandpa’s for a yummy lunch (ham is Lukie’s favorite) and then Lucas took a LONG nap so Daddy and Mommy hunted for his eggs in the back yard. He also got two new shirts from the Easter Nana and some new books from the Easter bunny anda wonderful Elmo basket filled with goodies from Grandma Kathy andanother wonderful basket with playdough and an Elmo movie from Aunt LeeAnn and Aunt Kris. He is too spoiled.
Spring break is this week so he is at daycare full days. Miss Lisa seems happy to have him all day so I hope it goes well. He loves his daycare andwe are so fortunate to have such a wonderful group of people taking care of Lucas. They accept him with open arms andmost of the kids there have learned that he is "special" yet the same. The daycare posted a flyer about the walk-a-thon on the daycare doors today and I can only imagine the amount of support we will get from the parents there.
