Information Regarding
Samuel Matusik

Where Do I Start   11/24/2009  I am not going to go into why I have not written other than saying I was busy which is a terrible excuse. So let me just leave it at that and try and update about Sam and what we are up to. Sammy has changed resideneces since my last update. We moved to Naperville, IL. The move was one the of the hardest things Lynn and I have had to decided to do. For all the reasons we had, it seems to be realized daily. The Naperville school district is the one of the best in the state and country for special needs children which was our main reasons (short and long term)to do everything we can in our power to get Sam what we feel is the best care. We needed to establish residency by age 3 and we felt that there was no reason to prolong the move. We also moved Sam's Easter Seals therapy to Naperville which saves Lynn approx. 30 minutes each way on her commute 2 to 3 times each week ( saves Sammy roughly three hours traveling a week). We are now closer to my parents (whcih seems like daily sometimes) and my sister Sue is about a mile away and she helps with the twins about twice a week. We moved away from my sister Chris is the down side. Chrissy was always there for us and still is if we need her. We will miss the home, the memories created there and all of the great neighbors and friends that did so much for us. What I have learned is that a house is only material and home is where your family is! Now for the main attraction, Mr. Sam. Right before we moved Sam had a nerve conduction study done at U of C which came back normal (no nerve/muscle disease) and proved that his right diaphragm, which was once paralized, is actually working and should improve with time, we hope. Right after the move, he had a three night at home sleep study which went really well. He only experienced very brief and very few obstructive apneas which was a great relief. Sammy is now 21+ lbs and beginning to realize/recognize his surroundings much better. We have braces for his legs/knees and ankles that allow us to work with him for about 1/2 hour a day with a Pilates ball (big blow up ball) which he leans on and stands up with to get his hips and legs stronger and to help with bone density for growth, etc. His neck strength has greatly improved to the point when he sits up in your lap or in his wheel chair he can go unassisted for minutes at a time without resting back. Sammy received a wheel chair (a.k.a kid kart) about 2 weeks ago and has adapted very well. There is a tray on the front that we can put toys on that helps him excercise his arms and improve his grip. Like all children, Sam does get enjoyment knocking off the toys on to the ground. Sam also has added another therapy session to his busy week with an occupational therapist who comes to the house (yeah for Mommy) who seems to also entertain his big brothers too. Sammy had a sleep study Monday night at Rush, which we are hopeful that the results are positive. He acutally slept most of the night and was monitored without oxygen for about 3-4 hours. I think he did good becuase I did not hear the alarms going off (alarms would go off if his oxygen levels dropped) as I was sleeping on and off most of the time I was in the room. We should be getting the follow up in 7 to 10 days. On the flip side, Sam's scoliosis has gotten 2 degrees worse. We keep Sam in a brace from about 7AM until 9PM everyday. Hopefully the fitted wheelchair will help with his spine. My thinking is that as is his breathing improves that this will improve his trunk support which will in turn help his spine. Sam will be seeing a third genetisist at U of C at the end of the month and a 2nd opinion ortho for his spine early December. In closing, we all have seen such great progress in this sweet little boy since he came home from the NICU, almost clinging onto life. He has a very sweet disposition despite all of his troubles and humbles anyone who meets him. He loves to play and he loves to laugh. We are all ready to celebrate the holidays and are thankful for our little gift from above, though sometimes difficult to care for at times, a great joy to have in our lives. Have a great holiday season everyone!

Happy Thanksgiving   10/25/2009  Happy Thanksgiving to evenyone. Sam will be celebrating his first' Thanksgiving' at Aunt Chris'. We are all excited and looking forward to it. Sam's latest weigh in last week had Sam at 17lbs 6 oz. ' Sam had his button put in last week (the second attempt) I won't go into the details. Sam has been adjusting well to his new feedings and does not have' nearly the reflux issues that' he has had in the past. Therapy is going slowly for his oral issuess and we are prepared for the the long haul. Early' predictions are that he might have his button for a couple of years. We will continue to work towards getting Sam to the goal of oral' eating but realize that are main'focus will always be concentrating on his breathing. Physical therapy for Sam on the other hand has shown some signigificant improvement over the last week. Sam is startinng to gain control of his neck without assistance. This is a huge milestone for Sam. Hopefully he will continue to improve and with the assistance of a back brace. The brace should help even more. Re: the brace, Sam's scoliosis has gotten worse and to help futher curviture, Sam will be wearing a body brace for 12 hours a day. The last sleep study we had a month ago gave us some signs of improvement and some setbacks as well. We are scheduled for another visit in Feb. The good thing with these visits is that we are starting to create hard tangible documentation which will help us(doctors) understand what is going on with Sam and how/what to do for Sam' to get stonger and feeling better. Around this time of the year' is when you tend to count your blessings. We have been through a lot this year and realize the road ahead still unpaved. None the less, we still recognize and are blessed with Sam and that he has not had to return for a stay in the hospital. The winter months will be' a true' test andd I pray that we can make it through the winter season without any major setbacks. I am also so very thankful and lucky to have a wonderful family that has helped daily with everything. I truly' do not know what Lynn and I would have done without my parents and my sisters and their families. I don't want to leave out the support from neighbors that help with sitting and offers, especially Kathy. Remember, there is always something' to be thankful for. Sam's Dad

I am a Big Boy now!   10/13/2009  It has been a while huh?? Sammy is doing quite well these days. He is in his last year of preschool before Kindergarten. He enjoys school so much that he even went to summer school this past summer. Sammy continues to do well with his switches at school and has recently been working on making choices (he even does it with his eyes closed!). We think his favorite thing about school is the school bus. He loves his nurse Cathi (who spends the afternoon with Sam at school) and he is also very happy when the bus arrives at the house to pick him up. Medically, Sam is holding his own right now. LUNGS: He had a sleep study in August which left him still requiring O2 during the day and his Bi-PAP at night. His pressures were increased on the Bi-PAP, due to the fact that his CO2 levels were raising slightly. SPINE: His scoliosis has remained stable over the year and he still wears his TLSO brace all day. NEUROLOGICAL: Sam is doing well here. We do not need to see the doc until winter 2008. GENETICS: Sammy's genetic research project has finally been completed, two years later. We have found that Sam has what he was earlier diagnosed with "The Sam Syndrome". There is not a match ANYWERE for what Sammy has. The good thing is that he will remain in the world wide genetic database. So, in the future, if anyone is discovered to have the same translocations or complex rearrangements with the same genes that Sammy has, we will know and it will hopefully shed some more light on his future. Also, if there happens to be a breakthrough in genetic research which will help Sam, we will be contacted. So for now, we are done looking for answers and will continue to take care of Sam as we have and conquer new challanges as they arise. HIPS: Sam did have surgery on his right hip due to his tendon being too tight and causing his hip to dislocate out the side. He went through this quite well. Now, his left hip is showing signs of dislocating (out the front). His one leg is significantly longer than the other due to the displacement of his hips. No surgery is needed at this time. Thank God. (It would be a quite extensive 6 hour surgery to reshape the hip socket and his femurs). As long as his pelvis and lower spine stay in alignment we are okay. Sam is required to wear a brace at night (which he refuses to wear) but because he doesn\'t we just have to make sure he doesn\'t sleep in the frog position. Sam does love to stand with his supports and his walker as long as his favorite video is playing for him. SPEECH: He continues to receive speech at school and recently had an evaluation at Easter Seals in September. He may begin monthly treatments there in the new year. He is VERY vocal making sounds and laughing, he has even said MOM a few times or more (but usually when he wants something). He does also refer to mommy as MMMMMM, also. COGNITIVE: Sammy is very aware of his surroundings. He also is very aware of what we do to him. He watches everything we do. He even recognizes the entrance to our subdivision, street and driveway, in the stroller, car or on the bus. He even knows when we turn into Nina and Dzia\'s subdivision or driveway too. ACTIVITIES: Sam still enjoys going for walks and LOVES to watch his videos. Among his favorites are still Baby Einstein and Teletubbies and also Backyardigans, Scholastic books on Video and Elmo. He has quite the collection of DVDs. He loves music too. Among his favorites are Jim Gill, Pink and Nickleback. Sam likes to drive with his Leap Frog toy (our second one to date). Likes his"special need" toys, V-tech Baby "video game" and his various Backyardigan toys. Sammy has been chosen to be one of the "Poster Children" for the Easter Seals Annual Photo Exhibition this year 2007. His photo will be on exhibit at the Villa Park Easter Seals at the end of this month. Unfortunately we did not have a very good experience with the photographer assigned to Sam (not going into any details) but because of that, Sam is also going to be in the 2008 photo exhibition as well. Yeah for Sammy! Sammy would also like to once again thank everyone who participated in and/or donated to the Easter Seals Run for the Kids this past May 2007. We had a great day and also raised a great deal of money to help the "special children" of Easter Seals. Uncle Larry is also holding the Turkey Shoot Out in honor of Sammy and Easter Seals to be held on November 10, 2007 (for details on this event please contact Larry or Frank). If all goes well that day, the guest of honor will be making an appearance at the club house after the golf outing. Bring your cameras as Sammy is allowing pictures to be taken with him :).... While we are enjoying the cooler days of autumn and anicipating the holiday season which is fast approaching, we are hoping everyone stays healthy in our home this winter, especially Sammy. Please keep him in your prayers!!! Love to all, Sammy and Family

Sorry It's Been So Long   10/08/2009  Well how time flies when you don't sleep, chase kids, change throngs of diapers and try to keep your sanity. Now let's get to Sam. Mr. Sam is tipping the scales at a robust 16 lbs. 4 oz as of yesterday. Almost 2 1/2 lbs. since my last update over 5 weeks ago. We have had a lot go on since then. Sept. 11th Sam had minor surgery to insert the G-tube into belly. The proceudre took about 15 minutes, which seemed to be an eternity for Mom and I. After the surgery it was quit a reality shock to see a 12 inch object projecting from your infant's son's stomach. You can never really prepare yourself for this, but since then we have learned to adapt as has Sam. In approx. 2 weeks, Sam will have another procedure to remove the tube and it will be replace with a "button". This will then allow us to hook up the tube to him instead of there being a tube like we have now. In reference to Sam's feeding, he is still having reflux issues and we are getting mixed reviews about another surgery ( Nissen fundoplication). Without going into great detail, this procedure/surgery would prevent Sam from vomiting or burpring and is non reversible. We have arguments from Dr's to pefrom the surgery and also oppose it as well. As parents and advocates for Sam we will be weighing everything pro/con and hope that whatever the decision we make will be the right one. Next, on to another part of the anatomy. Sam is going in for an MRI today on his spine. This will give us direction to why Sam's tone is not where it should be. The doctor will be looking to see if anything is pulling on his spine or it we just need to continue on with more agressive therapy. The MRI we are not worried about as much as the means of anesthesia to help Sam keep immobile for the MRI. DUe to Sam's respiratory issues, there is a huge concern and worry what might happen. WE are praying for all to go well and a positive outcome as well. After all of the above, we have another sleep study for Oct. 20th. We will review Sam's need for 24/7 oxygen and address the reflux issue as well. Maybe Sam will even sleep this time!! I was fairly winded this time and maybe not too easy to understand, but I want to try to continue to commnicate as best and timely as I can. Bear with me and give us a call or visit whenever you can. With the winter months upcoming, it will be harder to get out. I will attach a picture of Sam within the week. Keep up with the prayers we need them! Sam's Dad.

Growing Day by Day   08/28/2009  We've been having a busy summer and getting along as well as expected. Sam seems to be growing faster than ever. Sam is now 14 lbs as of his last check up. Sam has graduated from weekly weight checks at the Dr's office. Yea, one less weekly visit for Sam and Mom. In the meantime, we replaced that visit with a second trip to Easter Seals for Sam's therapy. Therapy is every Wednesday and Thursday. We have seen steady progress in his physical abilities to move his legs and arms. Sam is still very weak with his neck, but in the last week or two there has been some improvement. We are very excited to see him be able to lift his head without his his face crashing down on the floor. Sam was scheduled for an MRI this past Monday that really never happened. The MRI was needed to follow up his sacral dimple, which is at the base of his spine. We had this checked in the hospital and everything came back fine, but the Dr's wanted to stay on top of this as it could "pull" on his cord causing the little movement in his legs. To add to all of Sam's other issues, he has been diagnosed with a curvature of his thoracic spine (scoliosis). We have an appt on 9/5 to meet with the Pediatric Orthopedic to determine what to do and how severe of case he does or does not have. Then, we follow up the next week with surgery for his G-Tube. This is the surgical insertion of a feeding tube into Sam's stomach. The procedure is somewhat invasive, but relatively quick. The main concern is the the method of anesthesia. Sam's breathing causes concern for the type of anesthesia and that he really should only be sedated with local means. This was the reason that Sam could not complete the MRI on Monday. Both of the above appointments are at Loyola in Maywood. Then down the line, God willing no further complications, we go back to Rush Presbyterian for another sleep study with Dr. Silvestri. Sam is still on oxygen (7/24) and will be studied to see if this will need to be continued. Sam is a precious child and true gift from God that has taught me the meaning of patience, unconditional love, as well as sleep deprivation and the true meaning of stress and how to handle it. Thanks again to all for your help, thoughts/prayers, calls that help Lynn and I get through each day.

How Time Flies   07/24/2009  It's hard to believe that it has been a month since I last updated Sam's progress. Let me get started. Sam now weighs 11lbs 8 oz. The schedule of Dr. appointments/specialists has not relented as of yet. The one main change to date with Sam has been his return to oxygen 24/7. We now have a machine at home and portable tanks to maintain Sam's oxygen levels. Our over night trip to Rush Presbyterian confirmed that his sats were dropping and that he was not keeping up at a satifisfactory level. Dr. Silvestri called our home Dr's office for a prescription of oxygen to be filled and meet us at home. Well, what happened next I'll never forget or forgive our Dr's office. We get home to find out that the oxygen was not there, but that the Dr's office never called in the referral. Sam was crashing which led me to call 9-1-1. Thank god for the fire dept. and our close proximity to the Fire Dept. Everything ended up fine, but I hope that none of you ever have to experience having to go through anything like this. It is pretty much for sure that Sam will have to have surgery to insert a tube in his belly to continue his feeding. As bad as it sounds given the option, Lynn and I agree that getting the tube out of Sam's nose will be better for him and will eliminate his being able to pull the tube out and the possiblity of choking as well. My guess is that by the end of August Sam will have this procedure and hopefully this will be without issue. Due to Sam's breathing condition, he cannot be "knocked out" for this operation. Sam was recently baptized on Saturday 7/19 in a beautiful ceremony. Ralph and Peggy Lech are his proud godparents. Sam had a gorgeous day and was perfect for the entire day. Fr. Doug Hauber was kind enough to help us celebrate the day and baptize Sam @ our parish. We were able to have a private ceremony as to minimize Sam's exposure to the unknown. Sam has a couple of big Dr. appointments next week the we are praying for positive results. Please continue praying for Sam and also for Lynn who has been a model of strength and been unrelentless in her 24/7 care for Sam, while still finding time to keep Steve and Joe entertained. We are also very thankful to get continued help with from my sisters and parents. I don't know what we would do without their love and support. We have also had help in sitting from a couple of neighbors which we will never forget their thoughtfulness as well. Until next time, Sam's Dad

What Where When Why   06/26/2009  We are now finally entering into the care phase for Sam since he has been home. Dr visits, appts, therapists, insurance, referrals, etc. etc... Let me give you an example of the last couple of days through next week. Every week Sam has to go in for a weight check to the Dr's office. Tuesday was Sam's visit this week. Sam now weighs in at 10 lbs. 5 oz. Wed. 6/25 we drove into the city to meet Dr. Silvestri at Rush Presbyterian (Chicago, IL) for our much anticipated visit. We were very pleased with the Dr and her genuine care and interest in Sam and our concerns as parents. Dr. Silvestri was pleasantly surprised with his breathing progress, but was somewhat concerned to see Sam still with a feeding tube and his lack of control with his neck. Overall, Dr. Silvestri wanted to get the whole picture or in her words "put the pieces of the puzzle together" before giving her total evaluation. This inculdes getting more detailed reports from the hospital, follow up from the Neurologist visit on Friday and her sleep evaluation on 7/2. We are looking forward to her report once all the information is gathered. Dr. Silvestri is nationally recognized for her research in SIDS and consults on many cases for infant pulmonary issues. Friday, we meet with the Neurologist. This is the same Dr. that gave same the "thumbs up" after his MRI in the hospital back on March 21st. The neurologist will now be looking for reasons as to why Sam still cannot control his neck. Hopefully this will just be a progress check up and everything will come back fine. We are saying our prayers. Monday 6/30 Sam goes to the Feeding Clinic at Easter Seals. I don't know what they can do at this point. Sam has stopped feeding orally exclusively, even though we continue try at every feeding. We are mentally preparing for the G-Tube (inserting feeding tube into his side). This is better for Sam in the long range and easier to manage for the parents. The Dr. that is running the clinic is the same Dr. that we have an appt with on 7/9. Hopefully the Dr. will speed things up with Sam once he sees him. We will see. Wedensday, 7/2, Sam goes to Rush Presbyterian for a sleep study with Mom. Sam will be monitored overnight, tests and X-rays will be taken in the AM before his check out in the AM. Now about Sam. He has been progressing well as of late with his sight and recognition of his brothers and parents. It is great to see him smile and start to laugh. The more milestones that he can reach help relieve some ot the daily stress and worry. Enjoy the picture of his smile and I will continue to try to post pictures more frequently along with weekly updates. Lynn was told over the weekend at a family function that more pictures were requested so I will try and honor it. Keep Sam in your thoughts and prayers. Sam's Dad

Too Long!! Shame on Me!!!   06/17/2009  I(we) have been so busy that everytime that I mean to update Sam's status that I thought that tomorrow would be that day. SO without further delay let's get down to business. Mr. Sam is now 15 months old and weighs 19 1/2 lbs. His condition has not greatly changed over time but we have seen slight improvements that keep us motivated and pushing Sam. Sam still has trouble controlling his neck/head, but is getting some strength slowly. Sam is now up to 3 forms of therapy a week at Easter Seals (P/T, O/T and Speech). The therapy takes place two days a week which keeps Lynn busy and his brothers on the go as well. Joey is starting to resent Mom taking Sam to therapy (not to mention all of the Dr. appts.) Due to lack of sitters and Joey's insistence, Steve and Joe have attended a couple of Sam's sessionss and are quite the hit at Easter Seals. I think the staff is happy to see Sam's brothers, but even happier when the go home. My work schedule as of late has required me to travel 4 staight weeks in a row to help complicate matters as well. During my travels, Lynn has been strong and kept her sanity. I do not know where she gets her energy/strangth from, but she is an insipiration to me and is a daily example of devotion, love, dedication and uncondtional love that she gives to our family every minute of every day. She even finds time to bake!! Our last sleep study lasted two nights and we were fearful that when the second night was added that Sam might need a tracheotomy. After a lot a praying and worrying, we just returned from Dr. Sylvestri and she felt that Sam was progressing well and that at this point in time there is no concern for intervention. We also were given the go ahead to stop using one of this nightly moinitors. Also, we were told that we can perform the next sleep study at home. This was some of the best news that we have received in a while after leaving any of our Dr appts. We are now exploring/researching with the help of Sam's primary care physician, the best hospital to give him the once over. We have been to almost every hospital in the Chicago land area with different specialists and feel we still need answers. Right now Toronto and Boston (Harvard) are the locations that we been told to be the best for infant care with Sam's history. If anyone reading this knows if something better or somewhere else that we should look into please give us a call. Finally, with mixed emotions we have pulled the trigger and purchased a house in Naperville. We have been bleesed with wonderful neighbors which has made our decsion so tough, but in the long run we feel that logisitics, family, services, etc.. will benefit our needs as a family. Hopefully our house will sell quickly again (for those who don't know we tried this 2 months ago, I'll spare the details). Wish us luck and please come visit. Move date scheduled for August. My promise is to try to stay on my monthly plan for updating. As always we welcome visitors and hope to see you this summer. Sam's Dad.

Sam Sam Sam   06/12/2009  Tomorrow will be 1 month that Sam has been home. We are all adjusting daily to the daily demands. Sam had a week of no weight gain, but then we changed his feeding and volumes, which helped him now get up to 9 lbs 10 oz. Lynn has had some troubles communicating with Sam's primary care giver, but has had a lot of success with the therapists on the other hand. The therapists have been very personable and caring and full of advice. Sam's next big date is June 25th that we are looking forward to. We have an appointment with a Dr. at Rush Presbyterian in Chicago, IL that is nationally known for her work in pulmonary research, especially SIDS. Based on her visit with Sam and prognosis, is what our primary care physician and the therapists are waiting for to assist in our future care giving. We hopefully will have some kind of a game plan. We were also told that the Dr. may want to keep Sam for an overnight evaluation. We are now in the wait and see mode until then. For now, Sam has pretty much refused to eat orally and we have little to no direction as to what to do. We are resigned to the fact that Sam will probably need a feeding tube (button as they call it) surgically placed in his torso for all of his feedings. Unless we have a miracle or better guidance from the medical world (which has been frustrating due to all of the legal insurance/referral bull shit with the Dr.) that's the plan that we are looking. It is frustrating waiting a weeks or a month to see someone or hoping that the Dr. will approve the referral. I just pray that Lynn and I will always do the right thing and that a higher being is looking over us and giving us strength, guidance and wisdom. That's it for now before I start getting more involved and verbal about the insurance/medical issues. Keep Sam in your prayers and come visit Sam if you can. We are always looking for someone to entertain Steve and Joe and show off Sammy. Sam's Dad

I Didn't forget   05/28/2009  It's been about a week and a half since Sam has been home and I haven't had the chance to update and let you know what's going on. So here I go. Sam came home on Friday May 16th. We came home with a portable monitor that monitors his heart rate and breathing. I don't think we were even out of the parking lot yet and the monitor was going off. Uh Oh!! But as we now have gotten used to the monitor this was just a blip and no big deal. Sam has done well and the monitor really hasn't gone off unless he has been lying awkwardly, nothing to do with his health. Our biggest challenge is getting Sam to feed on a regular basis. For the first few days Sam would not attempt to bottle feed. But Mom and I are persistent (more Mom than Dad) and now Sam has been picking up a little lately and almost up to an ounce per feeding. The remainder of his 3 oz feeding is completed via his NG tube. Sam is now up to 9lbs 2 oz. and still fed every four hours. If Sam still does not feed regularly via mouth in the next month or so, we will have to possibly add a feeding tube (medical term is button) on the side of his stomach. We're told that it's not a big deal and is less complicated than dealing with the tube in his nose. I still have a hard time with either alternative, but as we've been told the main thing that we need to concentrate is on his breathing. Breathing is the larger issue and as long as Sam is doing well with that, than everything else will eventually fall into place. Mom is very busy during the day playing Dr., nurse, daycare, insurance administrator and admin assistant for all of Sam's appointments. Sam has weekly Dr. appt's, many phone calls to set up his in house physical therapy, speech therapy, occupational therapy, in home nursing visits, etc... Anyone wanting to visit to help Lynn for a few hours to is more than welcome to come by. We are learning quite well to say yes. Steve and Joe have been very good big brothers so far. Steve did get sick the first day Sam came home and was up at night more than Sam. Steve eventually was diagnosed with "Rosie O La" (no idea how to spell it). Due to not wanting to get Joe contaminated, Steve was sent off to the 5 Star Resort called Nina and Dzia Dzia's (My parents.) I don't think that Steve wanted to come back, but everyone needs reality even at 21 months. Overall, we are adjusting and Lynn has done a phenominal job. There isn't anyone in my eyes that could be giving Sam any better care!! We are learning patience and faith more so every day. You never know what you are capable of doing until put to the task. Be good, next time I'll post some pictures. Sam's "Glad he's home" Dad.

Sam The Man   05/16/2009  Sam had his double hernia surgery yesterday and came through it with flying colors. From the time he left the room to the time he returned was in total 1 hour. The big worry was if Sam would need to be "knocked out", but he did fine with his spinal and didn't require any further sedation. The doctor said that he should be able to resume normal activities (no heavy lifting) and that babies are not affected by the surgery nearly as bad as adults. Having had the surgery twice, I hope Sam is feeling little to nothing as the Doctor stated. With Sam's follow up being so positive yesterday, the wheels went in motion for Sam's disharge. Mom and I started packing up his medical equipment, clothes, asking more quesitons about his care, etc.. with the hope that he will have a stable night and we will take him home Friday afternoon. Overall, we are excited that Sam is finally coming home and I hope that I am not premature in sending this out before he is actually home, but everything is pointing in the right direction. Mom made her normal 3-4AM call and was told that Sam was doing fine. My next update will be telling you about Sam's first car ride. Sam's Chauffer..

Surgery Date Set   05/13/2009  Well after all of the issues and dealings that Sam has gone through, we now have a date set for his surgery. Sam will have his hernia repaired on Thursday May 15th (his second month birthday) at 11AM. At this point I am not holding anyone to this date and time because I know it's out of my hands. I'm just praying for Sam that we get this done and over with without any complications. Sam has slowed down somewhat on his weight and is currently weighing in at 8 lbs. 3 oz. Sam also had issues feeding orally, which could be due to his thrush and reflux. When feeding Sam last night he did seem to show greater interest in feeding before he fell asleep. The thrush as well as the reflux are being treated with medication and hopefully within the next week we should see steady progress with his feedings. In the meantime Lynn and I have become fairly proficient with his NG (tube) feedings. I think the happiest day next to bringing Sam home will be when we can get rid of his feeding tube. That's it for now. I will try to update Sam's surgery Thursday PM or Friday. Sam's Dad

What's Next??   05/12/2009  Well since my last update there were a few things that have changed and needless to say it is Monday and Sam is not coming home. I will update as to what has happened in the last few days. Early last week, about Tuesday there were suggestions that we could take Sam home on Friday. Sounded good to us. Then we went to the Doctor with Steve and Joe and their Dr. felt that with two sick boys at home that bringing Sam home would not be a good idea. Now we were back to Monday for sure for discharge. Then on Thursday we were told that Sam possibly had a hernia, thrush and that his reflux was getting a little worse than originally expected. What a day that was!! Friday it was confirmed Sam had a hernia and surgery was recommended. We were ready to go Monday for surgery if things could get coordinated with all parties involved. Well, then the weather entered into the picture on Saturday night. The hospital was struck by ligthning, which in turn set off the sprinklers in the O/R, causing damage and flooding. All sugeries on Monday were now based on priority. As of today we should know if Sam will go in for surgery on Tuesday or Wednedsday. Barring no further complications from Surgery, the feeling is that Sam should then be free to go home about 48hrs from the time of his procedure. Which would put us at Thursday or Friday. The good news is that Steve and Joe are over their colds and hopefully we can get the house germ free for Sam's grand entrance. All good things come to those who wait? Is that how the saying goes?? Mother's day for Lynn was as good as can be expected. Sam made Mom a card with this foot prints with Dad Saturday night, with the help of one of Sam's favorite Nurses, Sara. Please keep Sam in your thoughts and prayers as he handles his latest hurdle. Sam's Dad.

Date Set   05/06/2009  We have a date set for Sam's discharge which is Monday May 12th. If all goes well and Sam remains stable the date will be locked in for departure. Besides Sam's health we also need to get a few things ordered and ready for Mom and Dad to use at home (feeding pump, monitor and oxygen). Once everything is lined up, I will feel more confident about bringing Sam home Monday. Sam has kept his weight the same virtually since the last update (last night 7lbs. 15 oz.). Due to lack of increase in his weight, the Dr's have increased his feedings to 95cc's. Over the weekend Sam was circumcised was set him back on his oral feeding volumes. But as of yesterday he was starting to p/u some momentum. Today Sam will be getting an X-ray to find out if there is another reason for his lack of oral feeding. The x-ray will determine if the formula is going into his lungs (aspirating) or reflux. If reflux is the diagnosis, this can be helped with medication. I'm not sure how or what we will do if the diagnosis is apiration. I'm sure I will find out when he is diagnosed. My medical training continued yesterday after being yelled at by Lynn and the nurses for my nasal tube insertion progress. I attempted the insertion yesterday for the second time and I believe that I am in the B- to C+ range. Sam is a very good patient and helps me get through this with limited trauma. Another first for Sam this weekend was meeting his cousins for the first time. The Catalano's (Jonny, Kristin and Bobby)came calling on Saturday and Lynn got a very nice picture. I will post the picture in the near future. The next time Sammy sees his cousins they should be able to hold him. Uncle Larry and Aunt Sara visited last week and they were able to hold Sammy for the first time Nothing can be a better cure than TLC. Also, I wanted to add that Lynn's Godfather Bill came by to visit and brought his father Bill Sr. This is Sam's Great, Great Uncle. There were 4 generations in the room at once!! Very exciting and you don't get to hear or see that very often. The light is becoming brighter at the end of the tunnel for this journey in ours and Sam's lifes. The next journey will begin when he gets home and we begin to handle all of his care exclusively. The saying goes "the lord only gives you what you can handle". Sammy's Dad.

We have Pictures   05/02/2009  Sam is now progressing well enough that he has exceeded some of the doctor's expectations. Sam has continued to gain weight (7 lbs. 14 oz.) and has not needed any assistance breathing since Tuesday. Wednesday one of Sam's doctors said that he felt that he would keep him another 2 weeks and then yesterday another of his doctors said that they would shoot for next week. Hopefully we'll have some answers today as to what we can expect. In prepartion of Sam's coming home, Lynn and I had to take a CPR class (which I would STRONGLY recommend that all parents do), practice inserting Sam's feeding tube and learn how to operate a few yet to be seen devices (for feeding, oxygen, monitor, etc). Also, Sam will get a nurse for home visits for 7 - 10 days. As you can see I finally posted the pictures of Sam and his progress. I will get Mom to get a nice close up without anything on his face for the next update. Hopefully at that time I will have a date of which Sam will be taking his first car ride home and breathing real fresh air. It is hard to sign off without saying thank you to everyone that has helped and kept us in their prayers. I don't know what we would have done without all the support that we have received from family, friends and neighbors. Sam's Dad

Big Brothers Meet Sam   04/28/2009  It has been a week since my last update, where does the time go. I will try to be more consistent from here on out.. Well, with Sam's progress moving along, we were able to bring in the big brothers to visit Sam for the first time last night. Sam was disconnected from everything and Lynn brought him to the window of the nursery for Steve and Joe to see. I don't know what was going through their minds, but they both said hi to Mom and said "Baby" when they first saw Lynn on the other side of the glass. Our plans our to bring Steve and Joe a few more times before Sam gets his walking papers and to get them used to the idea of the new baby. Now down to business on Sam's progress. Sam is now a robust 7lbs. 8oz. and "Unofficially" the biggest baby in the NICU. Sam is using no support for his breathing 6 times a day for one hour at a crack after each of his feedings. Today (Monday), my thoughts are that they will now begin to increase his time gradually throughout the week. The next hurdle is get to Sam breathing on his own for 7 days prior to his discharge. His oral feedings have been OK re:volume (Sam tends to fall asleep when eating), but the good news is that he hasn't required oxygen during or after feeding for a few days now. Overall, Sam has seemed much more alert the past few days and starting to make the nurses notice when he is unhappy with his crying. It is beautiful sound to hear Sam belting out his cries. This week will determine how good of an estimate next week will be for discharge. We're saying our prayers, but the main thing at this point is that he makes it home as healthy as possible. It's hard to believe the today is his 45th day in the hospital. Once again, thanks to all that have been supportive in so many ways. Please remember Sam's Dzia Dzia (translation Granpda)in your prayers as well, as he goes in for knee replacement surgery 4/30. Sam's Dad

SAM'S MAKING PROGRESS   04/21/2009  Since my last update Sammy has now been upgraded to full time Nasal Cannula. YEA!! No more CPAP, which now really allows Sam the ability to move his head and neck with out restraint and does not need to wear a stocking cap to assist with the application. It is really nice to see Sam relax and not fighting with that contraption. The next milestone will be to get Sam off the off the Cannula, then the feeding tube. One step at a time. (One of these days I will get pictures to show you what I am talking about) The latest weigh in now has Sam @ 7 lbs. 1/2 oz. Sam has been progressing well with his oral feedings. Overall he is @ 80 cc every four hours. Sam does anywhere from 20 to 70 cc's on his own before falling a sleep. On average he probably takes between 30 to 40 cc's. (30 cc = 1 oz). Lynn and I have a meeting tomorrow with the NICU staff to outline where we've been and what lies ahead. Early indications are that we are still a couple of weeks from check out, with Mother's Day weekend the target date to get Sam home. Hope everyone had a Happy and Blessed Easter Holiday with their families. Keep the faith. Sammys' Daddy.

Sammy's One Month Old!!!   04/16/2009  4/16/03 It's hard to believe that Sammy just celebrated his 1 month birthday yesterday. Sam celebrated by taking his first real bath. Lynn (Mommy) was quite excited and Sammy seemed to enjoy the experience as well. I was told that he never made a peep. It was also another milestone due to the fact Sammy was free from all of his wires and breathing attachements for the first time. Physically Sammy is starting to make more progress from the last update. He is currently on the nasal cannula breathing room air in increments of six hours at a crack. This means that Sammy is on his CPAP a total of ONLY six hours a day, YEAH. As of this update Sammy is now a whopping 6 lbs. 10 1/2 oz. Once we get the breathing thing down, we can then concentrate on Sam taking all of his feedings orally. We're just taking it one step at a time for now. As for recreation, Sam loves to be held, watching his teddy bear mobile, listening to his 2 CD collection and enjoys the company that come to see him. In the last week, Sam has met Aunt Joan, cousin Toni, Cousin Bill (Lynn's Godfather), Tony Medina, Jessica Medina, Maria Medina (both girls made beautiful pictures that are hanging in his room), Sara Pace, Auntie Chris, Pam Kaufman, Tracy Cox and Ronnie Heath. Sammy also has drawings from Cousin Michael and Marissa that draw attention from all the nurses. We are looking forward to Sam's homecoming. If all goes well he should be home by Mother's Day. What a great present day that would be for Mom. In closing, I just wanted thank everyone for keeping us in your thoughts and prayers. Keep smiling (as my Dad always says) and give your children a hug and tell them how much you love them!! Sammy's Daddy.

Samuel Thomas Matusik 03/15/03   04/09/2009  4/10/03 Samuel Matusik was born on Saturday March 15th, 2003. I started this site as a communication tool for our family, friends and therapy for myself. My goal is to update Sammy's condition as frequently as I can with his progress and any other worthy information. So here I go. Sammy has been diagnosed with Diaphragmatic Paralysis of the right diaphragm. In English, Sam's right diaphram is not functioning which does not allow his right lung to work efficiently. The prognosis currently is just time/maturation for Sammy (no surgery). There is some hope that the diaphragm may wake up, but if not the muscles in his chest will compensate for its' lack of movement. I have learned that you or I could have the same condition, but due to our size, we can overcome this and we can function normally with one healthy diaphragm. That is as technical as I can get at this point. Over the past week, we have seen improvement in Sammy's breathing and weight. Sammy's birth weight was 4lbs. 15 oz and as of this message 4/10 he now tips the scales at a hearty 6lbs. 4 oz. I wish he could eat cookies and milk shakes to bulk him up faster, but Mommy is doing great job supplying him with the best nutrition he can get. For now, that's what I have. In closing I just wanted to thank everyone for their thoughts, prayers and kind words. Please keep Sammy in your prayers along with the Dr's, nurses, my parents, grandma C, Sue, Chris, Tony, Mick, Larry, Sara, my nieces/nephews for helping Lynn and I around the clock and all my wonderful neighbors that are keeping us fed and are always willing to help (Special thanks to Cathy and Brent Edgar for arranging everything). Everyone has given their time and opened their hearts and homes to my wife, Steve, Joe and myself. I also wanted to thank the many others that have offered to watch Steve and Joe, visit Sammy or offer assistance with anything by just telling us to give them a call. We truly are blessed and fortunate. No one will ever know how much this is truly appreciated and has touched our lives forever. Also, thank you to Jeff Buti for setting up this web site. Whenever I get time (figure out the digital camera) I will post pictures. Sammy's Daddy

Happy 3rd Birthday Sam!!!!   03/20/2009  Can't believe we haven't updated everyone since his 2 year old birthday. Sorry. In the past year, Sam has reached a lot of his own milestones. He is well aware of who each of his family members are by voice and face. He can activate various switch toys for special needs kids on his own and has certain toys he really enjoys playing with, especially his Leap Frog driver. He loves to watch tv, some of his favorites are any Baby Einstein Video (he pretty much has them all), Teletubbies, Backyardigans and Thomas. He loves to swing (he just received a swing from the state which will give him years of backyard fun (I think it goes up to at least 100 lbs (and he is 32 at the moment). Sammy loves his brothers too. They make him laugh a lot. He enjoys watching everything they do and the louder they get, the more he laughs. Since our last update, Sam has also been working on standing, a lot. With mom and dad, his sit to stand device, and in the universal exercise cage at Easter Seals. He enjoys standing (he does wear ankle and knee braces too to help). He can stand anywhere from a half hour to an hour with assistance. His favorite things to eat (therapy amounts only) are veggie sticks and dum dum suckers. He is currently working on taking baby food by mouth from a cup (does great for his therapist, not so great for mom). He has stopped gagging when presented with food of some sort, which is good. His reflux has been under control. He does experience it on occasion. Sam has received an awesome age appropriate (as they call it) bed just recently. It is just like a hospital bed but nicer. It is blue and red, has side rails and the head and feet move up and down (so he can watch his new flat screen TV (Nina and Dzia) and DVD player (mom and dad) with great comfort. All fun aside, the bed is really used to help with breathing, positioning and reflux. It is also easier to get him in and out of too. We couldn't have gotten it at a better time as he pretty much outgrew the crib he was in. Sam's scoliosis is still progressing which is not good, It is at 40 degrees now. We have to try to keep it from reaching 60 degrees. He still wears a TLSO for most of his waking hours. Taking it off only for naps and therapy. He does sit up for at least 30 seconds without it on without assistance. Yea!!! That is an awesome accomplishment!!! No surgery is needed at this time since the scoliosis is at about 29 degrees with the brace on. Moving down the body to his hips. They are severely rotated and abducted but NOT dislocated. Which means he has to wear a brace on his legs at night to keep him from "frog legging" Standing helps with it too. He may have to have his tendons released with surgery in the future, but we are hoping with therapy and a little luck we can avoid it. As we are moving from therapy updates into the more medical stuff (we will get back to therapy later) lets update the breathing issues. Sam was on a Vapotherm since 2004 probably right around the time he had the pneumonia. Give or take a month or so. What it did was give him greater pressure and 02 which was heated and moist during the night. It helped him to keep him oxygentated well and also kept his CO2 levels at a more comfortable level also. Beginning in late 2005-early 2006 Vapotherm had a recall due to bacteria growing in the machine (can you imagine that) and we were forced to explore other means of breathing assistance at night (to avoid a trach and a ventilator). His doctor at Rush put him on a bi-Pap which is byphasic positive airway pressure. What it does is when Sam breathes in the pressure is higher and when he breathes out it is lower. He wears a little mask over his nose which is attached by four velcro straps to a little cap he wears on his head. He actually has tolerated it pretty well and will fall asleep faster than he did with the Vapotherm. AND here is the exciting part, he doesn't require any oxygen with it (only at night). Sam does, however, still have is 02 on all day. Genetics. We have been working with a doctor at the University of Chicago. We already knew that four of Sam's chromosomes were translocated and rearranged. The Genetics Department just received a research grant and a Genetics physician to further study chromosomes to see if any genetic information is missing at certain breakpoints in these cases like Sam. Which I guess will help put our minds at rest about it and pinpoint the reasons for the "Sam syndrome" and hopefully help us more with his future prognosis and care. Hope that makes sense. Anyway, we are happy that someone has actually taken an interest in our sons symptoms and maybe someday there will actually be a name for it. Until then.... Sam had his first experience sitting and playing in the snow. He had his picture taken with his brothers (who absolutely love him to death) and a snowman. AND for the first time, Sam also got to ride in his little sled pulled by Dad of course. It was awesome and totally worth waiting 3 years for. Sam has also started preschool (today in fact) at Prairie Children Preschool in Dist 204 in Naperville. He has graduated from the Early Intervention program and is now officially a preschooler. Sam has graduated from the Parent/Infant program at Little Friends (he had a developmental therapist, Dawn, come to the house from there since we moved to Naperville). We all will miss her very much as we will not be able to see her anymore. Sam has received a few toys that he enjoyed playing with Dawn added to his collection. We have also learned a few cute songs from her that we sing to Sam regularly, as his loves music too. He will not be seeing his occupational therapist at Easter Seals anymore (all lot of that will be done at school now). He will, however, keep one PT session and one Speech session at Easter Seals. He has made such awesome progress over the past couple years that we cannot afford to not go there anymore. Sam will not receive any feeding therapy at school and a lot of the PT services that he receives at the center cannot be duplicated at school either since school is more geared toward educational therapy goals rather than medical therapy goals. We may even add an additional PT session if all goes well with school and two outside therapy sessions. Sam will be going to school four days a week for 2 1/2 hours a day for the next 2 years or so, well until he turns 5. We have heard that kids like him make great strides once they enter the school districts. Mom and Dad are hoping to get some words out of him and better use of communication devices that are available. Along with all of his physical goals too. In closing, we will be submitting pictures soon, hopefully three of four, for your viewing pleasure. Sam continues to be a great joy and a challange for us. But as my friend Sara puts it "God only gives children like Sam to certain people for a reason. He is very blessed to have a family like us but we are also blessed to have him as a part of our family." Sammy continues to be a very happy, sweet and content little boy who starts every day with a smile. Love, Mommy

Happy New Year   02/04/2009  Hope the new is going well for everyone. We have had a busy start to the year. The holidays afforded a break from doctors visits and some of Sam's therapy' visits, but now Lynn and Sam have been on the go. Here is the latest: Sam now weighs 18lbs 8oz. and but has seen limited growth in his length. The doctor is studying this, which will mean more tests and doctor visits. Since Dec 26th, Sam wears a body brace to help with the scoliosis. Sam is a real trooper and doesn't seem to complain too much about' wearing the brace. Most of his waking hours he has the brace on. We are up to 12-14' hours a day. The main draw back that we see in wearing the brace is he increased ability to vomit. The positive' is that the' brace does help with his sitting up. Sam still does not have enough strength to keep his head up when sitting or push up when' he is on' his belly. We'll get there though. Also, we cannot seem to get his reflux totally under control, we have good days and bad days still. For now we are told that Sam still will not undergo any type of surgery to address the reflux. We have a sleep study scheduled for next week. We are' hoping to see improvement for Sam. We are not looking for to the alternatives if Sam is not progressing. Therapy has been continuing for Sam and within the next month should be adding another therapy session to his schedule. Sam is a favorite at Easter Seals with his loveable demeanor and dimpled smile. The smile which now has 3 teeth (two front and one to the side' of his 2 front). Sam is funny when he tries licking his teeth. They came in quickly and he has been so long with no teeth at all, that when he remembers that he' has them he has to try to play with them. Sam's brothers Steve and Joe are a natural part his therapy. Sam often laughs at them' when they run around or even when Mom and Dad are "correcting" Steve and Joe's behavior. That's all for now. Keep Sam in your prayers and I will try to update more frequently.

Merry Christmas   01/23/2009  Merry Christmas and Happy New Year to all of our friends and family.

Sam is 2!!!   05/08/2008  Baby Sam has made it to the Terrible Two's, although he is not the typical two (just for the record this is mommy speaking today). Dad has been really busy working and has not had time to update the website, so sorry. Sam now weighs 25 pounds and is finally quite healthy. Physically, he would much rather sit up and see the world around him than lean back anytime. Sam is also playing independently with some of his toys, especially driving ones and busy boards. He loves the teletubbies and baby einstein videos. He also loves to be outside. Just the other day he had his first ride on the infant swing at the park. (oops mom forgot the camera) Sam is also starting to say "ma ma" and we are all trying to get him to associate his efforts with the person, me. Sam's speech therapist will also be a little more aggressive with feeding as we have been given clearance by a recent swallow study that he is not aspirating any liquid or semi-solids, so wish us luck with that (mommy has always enjoyed feeding her boys). Although Sam is doing quite well now, he had a really rough winter. He had a bout of pneumonia twice, once was hospitalized for a week before the holidays. It was quite a difficult and trying time for all of us. Sam was having a very difficult time breathing and keeping his food down and gave us quite a scare. Mom learned how to use a "deep suctioning machine" on Sam to help bring the mucus up out of his throat and upper airway but that helped to clear it. Steve and Joey were also sick at lot this winter also. Needless to say we were all getting a little cabin fever. We have to send out a special and well deserved thank you to my good friend Sara Pace who has been a rock for me too lean on ever since Sam was born. Who would have thought that when we met a few years back through our husbands working together that it would have been such a blessing to all of us. She came over many days and evenings to help me adminster CPT (chest physical therapy to help loosen secretions) and suctioning (which the hospital did not explain that good to me) to help Sam stay healthy. She has also been a great help watching Steven and Joey and has become one of their favorites. Plus she takes mom out a lot to help de-stress her also. Thanks a bunch. Also Sam would like to thank Nina and Dzia and his aunties for also being an awesome support system too. They are always on call when we are in need. For the summer Sam is taking on a second hour of PT (which will be done at home) along with the other four hours of PT, OT, Speech and DT. He will be going to see Thomas the Tank in August and hopefully (if mom and dad can coordinate his various supplies and oxygen requirements) be attending the long awaited Matusik Family Reunion in August. In March, Mom took a week vacation to Arizona with Steven, Joey and Nina and Dzia. Had an AWESOME time. Sammy and Daddy got to hang out together and Dad got a taste of Sammy's therapy sessions, Dr appointments, etc. minus his brothers. Please keep Sam and us in your prayers as everything helps. He has made such wonderful progress over the past two years, many milestones which we thought we would never see, and as long as we can keep him healthy and strong, he should be able to meet many more. Sam is also sitting up quite nicely and learning to put out his hands to brace himself. When we get a chance we will try to post his second year picture from his birthday. Love to all, Sammy's mommy

Half a Decade Old!!   04/13/2008  We have had some technical difficulties with the web site and finally it is up and running again!! Wow!!! Sammy has just turned 5!! What a big boy. He is enjoying school very much. He enjoys the bus, especially his nurse Cathi. Some of his favorite activities at shcool are computers, playing in the sand, beans, peas, etc and finger painting (mom has artwork to prove it). This fall he will be going to kindergarten at a different school than his brothers so he can be a self contained classroom with some of his previous classmates from past years at his preschool. We are very excited about this although mom will be a little sad as all her boys will be in full day school this fall. We would also like to share with everyone that Sammy and his family (including cousin Marissa) were able to take their first family vacation together (all five of us) to Phoenix where we spent a week with Nina and Dzia. Sam did very well on the airplane in fact he enjoyed it very much (napped, ate and watched videos). He really had a great time in Great Aunt Rose's pool. He was able to ride Great Uncle Bob's train, went to the Grand Canyon, the Wildlife Park and the Botanical Gardens and of course swim, swim, swim. An awesome time was had by all. Sam's overall health has been good. He made it through another winter and a pretty cold and long one at that. We are anxious for spring but along with that we have some medical issues to take care of. Pulmonary: Sam has not been very compliant with his Bi-pap, due to the fact that he breaths through his mouth when he sleeps (Bi-pap fits over his nose) and he just doesn't like it on so....Sam just had a sleep study without Bi-pap and oxygen which we thought went okay, but.....He is having lots of episodes of obstuctive apnea, and a few recorded seizure episodes. Upon review of this study his doctor concluded that we need another sleep study to titrate his nighttime oxygen levels because he will no longer be using Bi-pap (since it wasn't on half the time anyway) which means he may need his oxygen level higher for sleep. He will also need to be seen by a neurologist again (we haven't in a while) to assess his seizure activity which will mean he will be having a 24-48 hour EEG done to see how severe his seizures are and if medication is necessary. He also has very large adenoids and tonsils which are constricting his airway a lot and a deviated septum which is closing off his nostrils quite a bit also. So...along with his paralyzed diaphragm and overall low tone, he is having quite a difficult time breathing at night (hence the mouth breathing and lots of snoring). He will also be visiting an ENT to assess these issues and probably undergo a tonsillectomy, adenoidectomy and possible(hopefully NOT)repair of his deviated septum. ORTHOPAEDICS: Sammy's scoliosis has remained stable. And that is probably the only positive thing right now. He continues to wear his TLSO brace all day. His hips are in pretty bad shape. His last visit to the Ortho was in March. His right hip is dislocated. His left hip is questionable. He just had a CT scan done to assess this. It seems that his hips also give him some pain depending on what position he is placed in or how much PT works with him. His doctor is still comptemplating repair of his hips (6 hour surgery) or something a little less extensive (which will take less time but may have to be redone in the future). If we leave Sam's hips the way they are they can become very painful in years to come and could also cause his pelvis to shift which could make is scoliosis worse. If that all happens it could effect his heart and lungs too because of severe malaligment of his spine....in other words we are not sure what to do at this time and we want to keep him happy and comfortable. Despite the issues with his hips, Sammy still enjoys standing with his walker. GI: Sammy remains on his G tube feedings. Seems he is growing quite well. He still only takes small tastes of things by mouth but that is good enough for us. Sammy seems to have an acquired taste for sweet things, especially CHOCOLATE. ACTIVITIES: (Here is the good part). As mentioned, Sam LOVES the bus. As soon as he gets his coat on and gets in his wheel chair and he hears the bus, he is ready to GO!!! Sammy loves his videos, he always has and he probably always will!! His favorites as of late are the Backyardigan's, Elmo, Wonder Pets, and his Scholastic Videos. Sam enjoys walks (weather permitting). He also had a lot of fun in the snow this winter (mainly watching it snow from the window or when mom or dad held him outside. He was able to ride on the sled around our yard once or twice and seemed to enjoy that too. Sam also has his own video game he likes to play...it is called V-Baby, it is kinda like V-Smile. Aside from Mom being the object of his affection, Daddy and his brothers are too and he is also very aware of what is happening in his world. He anticipates things that happen on a daily basis which is great. Sam has also become aware of members of extended family (Grandparents, aunts, uncles cousins and friends)...He seems to recognize their voices before he even sees them. Again this year Sam is going to be in the Easter Seals/College of DuPage photo exhibition entitled "Book of Firsts".. We are excited and hope it goes a lot better than it did last year. The entire family is looking forward to the 5th Annual Run for the Kids at Easter Seals this year on May 10th. We will surely appreciate any pledges for this event and would love to have you join us for this very special day!!! If anyone would like more information please go to the Easter Seals DuPage website at www.eastersealsdfvr.org We are expecting a large number of participants this year running for Sam. We hope you can join us. In closing we will like everyone to continue to keep Sammy and his family in your thoughts and prayers. Aside from taking care of Sammy and his brothers we are also in the process of selling our home. We have been lucky enough to have found a wheel chair accessible ranch home in our neighborhood and cannot wait to get in. Sammy is growing a lot and he is getting harder to handle. This move will hopefully be the last for a while... Love to all, Sammy and family.