January 30, 2008
Happy New Year everyone, a little late! I hope our update finds everyone happy and healthy! Things are a bit nutso around the Pulkrabek home, but in a good way. We are doing pretty good for the most part and are just cruising along status quo. We had a bit of a scare about Cole's hips recently though, an xray done at his 5 year appt seemed to show that his hips were both dislocated, it made for several tense weeks, for sure! We went to the Orthopedist at Gillette Children's a couple weeks ago and he assured us that his hips are NOT dislocated and that the best thing for him is to be weight bareing as much as possible, which was a HUGE relief to me and Tony to say the least!!! We did find out that his spinal curve is officially in the scoliosis range now, it has progressed from 6-7 degrees to 11.5 degrees since last April, which was a bit concerning to us, we weren't expecting so much change so fast. Cole is doing pretty good for the most part right now and has had a pretty healthy winter. We even made a trip to Disney without any major illness on his part, which is HUGE!!! His little sister seems to be taking over, but no major trips to the Dr. this year, WOO HOO!! He had a blast at Disney, that boy loves it just as much as I do I think, I just LOVE sharing this passion with him, lol! :)
Thought you might want a little update on the princess of the castle. Maya is doing super, she has proven to be such a fun, wonderful addition to our little family. She is a smart little whip and VERY opinionated already, she likes what she likes. She has a best friend, his name is George, he is a very curious little monkey, and he is never far from her side. She spends a lot of her time wrapping him in a dish cloth and carrying him around in it patting his back, she is already a very good littly mommy! She is just a little bundle of joy and she loves her daddy to pieces, she just lights up when he gets home, it is just too darn cute!!
January 25th - D-day - the third anniversary of Cole's diagnosis came and went this year, I didn't even remember until late evening when Tony reminded me. We are so busy these days, we didn't have time to reflect on it like we have in the past and I have to say, I think I prefer not dwelling in the sadness that this day has brought in the past couple years. The saying that time heals all wounds is kind of true I guess. Of course we still have our tough times with all this SMA stuff, and were really kind of slapped with some scary reality lately with the hip scare. We realized that the years he has left walking are very precious and we need to do whatever we can to prolong it as long as we possibly can. It is a daunting task, but we are up to it! Anything for our little buddy, he is totally worth all we have to give!!! We are heading back to Salt Lake City the first week in March to see how Cole has done since he finished the trial a year ago, I wll be sure to update when we get back. Until then, take care everyone and thanks for catching up with us!!
June 17, 2007
Happy Father's Day Tony!!! You are the best darn dad that I could have ever imagined for my kids!! You show by example what it means to be a great father and a wonderful man! You exemplify strength, humor, love, integrity, patience, honor... I could go on and on! You make me so proud to be your wife and the father of our children!
Love you!
Charisse
June 13, 2007
Wow, long time, no update, sorry about that!! Things are going pretty good around here. Today is Cole's first day of KIDS Camp where he gets all of his therapy, but will also have lots of fun with other kids. He was pretty excited when I told him it started today, he really loved it last year. Tomorrow is also his last day of school until August, he will miss it, hopefully we can find lots of fun stuff to do to fill our days. Cole has had a pretty good spring so far, pretty much healthy as can be. He is pretty much status quo strength wise and has been on the same meds since he finished his clinical trial in February. Maya is doing super, I can't even believe that she is going to be 1 in a couple weeks. She is a pro crawler now, and pulls up on everything and is cruising the furniture, she is also a master stair climber already. She continues to be such a sweet, fun girl, she is just such a joy to have around!!! Tony and I are headed to Chicago next week for the FSMA conference, we are so excited to get up to date on all of the new research going on, but more so to connect with some of the parents that we chat with online!!! We had our annual Jack Attack walk for FSMA a couple weeks ago, it was a soggy event, but we still had a great time and really appreciate all the work that the Gellners do every year to put on such a great event! We also appreciate all of the love and support that we continue to get from our family and friends, it still amazes me all the time how much people rally around us to help Cole, we are very lucky!! Hope that everyone is having a great summer so far!!
January 25, 2007
First order of business, let's wish Grandpa Frank a BIG OL' HAPPY BIRTHDAY! We are sorry that we aren't able to spend the day with you, but you are off doing GREAT THINGS, and we are so excited and proud of you!! We sure hope that you have had a memorable day!!
Well, today is D-day! (Diagnosis day!) I almost forgot, but Tony brought it up to me this evening. 2 years ago today we entered the world of SMA! I am kind of glad that I was able to make it through the day without obsessing about it and feeling great sadness like I did last year! Not, that I don't think about it, and want to make it better on a daily basis, but it has just become such a normal part of our lives, I don't feel so completely devastated by it these days! It just kinda is what it is! We are coming to the end of the clinical trial, which is really bitter sweet! It hasn't been the miracle that we had hoped for, but Cole sure hasn't gotten any weaker, that is for sure, so it is a great thing!! We will make our final trek to Salt Lake City Feb 14-16, it is always an intense trip, but both Tony and I are going this time, so it should be way more manageable!
I kinda feel like we are at a crossroads again, we are just finishing the trial, that we felt was life or death to get him into 2 years ago at this point! We feel like we have done the right thing at this point and we also feel like we have seen our guy improve and most important, not lose any function! It kinda feels like we don't really know where to go from here though, what is the next step?? I am sure that with faith in God, He will show us the next step to take! We have been so blessed in the past year, and for that we are truly grateful!!
November 28, 2006
Happy 4th Birthday Cole!! I can hardly believe that it has been 4 whole years since I first laid eyes on the most beautiful baby I had ever seen! I still remember so clearly the first time I got to hold you, all was right with the world, you had the softest skin I had ever felt and ohh the smell!!! We have already had quite a ride so far in your life, you have taught us so much about life and what is important! It was one year ago today that we went to Salt Lake City for the first time to start your clinical trial. What a crummy way to spend your birthday, but someday you will realize it was the best present we felt we could give you! You remember that we went there last year and were talking about it this morning, you sure have a memory, I will give that to ya kid!! You continue to blossom, and amaze as well as entertain us on a daily basis, you love it when you can make people laugh, and I sure love that about you! Your will of steel and determination test our patience, but we know that this quality is going to take you very far in life, you know what you want, and won't stop until you get it! I hope that we have made this birthday better than your last! "I love you as much as a mother can love" buddy!!
October 13, 2006
Wow, where has the time gone??? Things are crazier than ever around here lately, but good crazy! We have had a busy summer and fall. We went back to Salt Lake City for a recheck for Cole's trial mid August. Good news is that there have been some great increases in strength in the muscle that they test, the bad news is that he had another really nasty reaction to Versed which made for a really miserable time for all involved! He will NOT be getting Versed again, ever! He had a rough summer, trying to deal with a major growth spurt, there was lots of falling, limping and Dr. visits involved. He seems to be back to where he was before though now, and is maybe walking better than ever. Those growth spurts are so nerve wracking for us, I wish he would just grow slow and steady instead of 5 inches at a shot! He had a great time this summer going to a camp at the Rehab center though, he still asks to go all the time. He is back in preschool 2 mornings a week and really loves it, he comes out all smiles everyday, he is also back to swimming once a week as well. He has been really healthy for a long time, knocking on wood! Maya is doing wonderful, she is such a joy to have around, she is so smiley most of the time and already loves a good chat. She is growing like a weed and learning new stuff everyday, she is so interactive already, it is fun to watch her figure stuff out! Final tally for the Jack Attack this year was almost $25,000!!!!! Thank you so much everyone for all of the love and support for Cole's Crew, it was another awesome, awesome day!!
July 4, 2006
Happy Independence Day! We have had a really busy week around the Pulkrabek house!! Miss Maya Noelle Pulkrabek was born on June 27, 2006 at 7:35 p.m. after a pretty darn easy labor and delivery. She weighed in at 7 pounds 1 ounce and was 19 3/4 inches long. She was really healthy right from the start and we were discharged from the hospital less than 48 hours after her birth. She is the most beautiful baby girl with a head full of dark brown hair, just like her brother had when he was born. So far, she is a snugglebug and just loves to be held as much as possible. Cole is warming up to his new little sister, he wasn't too sure of her at first, but now he is pretty interested in her. I will try to get some pictures of her up soon, she is a cute one!
May 13, 2006
Long time, no update, things have gotten so busy around the Pulkrabek household! We are anxiously awaiting the arrival of baby girl P, it won't be long now, only 7 weeks or so left before we meet our princess! Cole is doing better than ever, he has now been on his trial medication for about 4 months, and we are already starting to see some great improvements and are very optimistic that he is just going to continue to get stronger and stronger! We had a very busy winter with a lot of traveling for Cole's clinical trial, although we were able to sneak in a couple fun trips here and there as well. Cole is now officially a huge Disney fan, he asks at least once a week if we can go back to Disney World, I guess it was inevitable being a part of this family ;) He continues to remain really healthy and has only had a couple minor respiratory problems this winter, for that we are very grateful!!! We are also really excited to announce that The Jack Attack:Round 2 is getting close, less than a month away now. You can click here http://www.firstgiving.com/Cure4Cole to follow our efforts this year, we are hoping to make it even bigger than last year!
January 25, 2006
First of all, a very happy birthday to Grandpa Frank, we know this one will be much better than the last!!!
Wow, I can't believe that it has already been a whole year since we entered the world of SMA! It seems like both yesterday and also a whole lifetime ago! At the time I thought that we were dealing with it so well, but looking back I realize now, that was not entirely the case. A couple months ago I went through the all of the emails that I got from other wonderful parents whose kids had SMA and I did not even ever remember reading a lot of them! I used to stay up until all hours of the morning scouring the internet looking for any piece of research that I might have missed previously, we had such a feeling of desperation to do something, yet it seemed that there was nothing that we could do to help Cole. We are in a much better place a year later, yes we still have that drive in us to stay on top of the research, but we also feel like we have finally done SOMETHING to truly help Cole! On Coles third birthday we traveled to Salt Lake City, UT to see if he would qualify for a clinical drug trial for the drugs Valproic Acid and Carnitor, Cole proved what a fighter he was while we were there, even under sedation he showed us how strong he was! We were a little worried that they wouldn't want us back since he wasn't exactly the most cooperative while we were there. We were very relieved when we got home and they asked us to come back the second week of January! We traveled back to Salt Lake, and this time Cole was a bit more relaxed, but still showed his fighting spirit while some of the tests were being performed, we couldn't believe how much more cooperative he was this time around though! Cole qualified for the trial and we received the medication last Friday and it felt like Christmas and our birthdays all rolled into one!!! We were a bit leary since there were quite a few side effects to watch for, but so far Cole is doing wonderfully on the medications with no obvious side effects! We are so relieved and Cole seems to be feeling great as well!
While I still really, really hate SMA, I do think that it has had some positive impact on our lives. It has made us realize what is really important and that the small stuff doesn't matter! I think that it has pushed us past what we have thought we were capable of and made us better people and better parents! We feel a new invigorated spirit in 2006, there are some very exciting times coming up for our family! Cole is going to be a big brother this summer to a healthy SMA free baby, and we could not be more thrilled! We want thank all of our family and friends for all of the support that you have given us throughout this past year, there is no way that we could have ever gotten through this half as well without you all!
November 20, 2005
Make sure to tune into your local ABC affiliate tonight at 7:00 central time to Extreme Home Makeover. The Johnson family is having their house re-done to make it accessible for their 5 year old son William who has SMA! Congratulations to the Johnson's on their new house and thank you for helping raise awareness for SMA!!!
August 25, 2005
Well, not too much new going on in the Pulkrabek household. Grain harvest is finally done, it was a long haul, but it is all in the bins now! Cole is doing great, he is so smart and his memory just astounds us everyday with the stuff that he comes up with! He is in to Thomas (or Thonas as he calls him) the tank engine big time right now, and well just trains in general! It is so cool to see him so passionate over something! We actually tried to get him to go outside the other day and leave Thonas and he refused, if you know Cole at all you know that this is truly astounding, he will usually give up anything and everything to go outside! We found out that he will not be able to participate in the clinical trial that we were hoping on until he turns 3, which doesn't seem so far off, but we are so anxious to get him started and see some progress! Well, not too much else going on around here these days, just waiting on sugar beet harvest now, I can't believe I am even saying that, time has gone so quickly this summer! Most of all I want to say... Congratulations to Rod, Kristi and Jack on the arrival of baby Rose! We are so thrilled with the birth of your beautiful, healthy little girl!!! Welcome to the world baby Rose!
July 22, 2005
Happy 5th Anniversary Tony!!! I can't believe how fast the time has gone! I knew the day that I married you what a wonderful man you were, but you have really astounded me the last 5 months! You are such a rock, so strong and supportive, yet sensitive and understanding at the same time! I am so grateful that you have been the one by my side through this incredible journey so far, I couldn't have done it without you! I know that with you at my side we can take on anything together! You have been such an amazing advocate for Cole and have pushed me to do things that I didn't know I had in me, thank you for making me a better person! You are the best husband and daddy that anyone could wish or hope for! Love You, Charisse
July 16, 2005
Hmm, I guess I am unsure where to start this journal, so I will just jump in! Well, we don't have a whole lot going on right now. Tony has been busy spraying, putting in some pretty long days. Cole still has one more week of preschool left, I am kind of bummed, he really seemed to like it! We will have to take a few short trips to Minneapolis when he is done to hit the zoo and Mall of America! We are also very excited about Uncle Ron and Aunt Jackie moving here, it will be so great to have them around all the time! On the SMA front not much to report right now, Cole has pretty much held steady since he was diagnosed. We have been racing each other to the mail box each day to see if there is any news about the clinical trial that is suppose to be starting up soon! Well, I hope everyone has a great weekend, I will try and update as soon as I get any news to share! ~Charisse
