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Wednesday, April 7, 2010 9:38 AM CDT
It is hard to believe it has been six years since Nathan was hurt. I have never written about how his injuries actually happened, but now I feel it is time to tell everything. We were told while Nathan was going through surgery to be put on the heart/lung bypass that Lorain Community Hospital suspected his injuries were Shaken Baby Syndrome and had contacted Children's Services and the Lorain Police Department who then contacted the Cleveland Clinic. Scott and I were, of course, shocked by this, but immediately suspected Mark Delcorral whom I was married to at the time and he was the person that was with Nathan at the time of his injuries. Nathan did not like Mark, and when I questioned his Doctor about this when Nathan first started having medical problems, (I wondered if it could be stress related) they told me it was normal for a child to have problems adjusting to a new man in their mother's life, so I thought we were going through this adjustment period. As we went through all of the eye surgeries, spinal taps and hospital stays that we thought were due to Pseudo Tumor Cerebri in actuality it was because I had allowed a deranged person to be part of our lives. Nathan didn't have any typical signs of Shaken Baby Syndrome, but we suspect that Mark had been somehow directing his assault on Nathan's head so there wouldn't be any evidence. So everything we went through and the life that we have been living didn't have to happen. I cannot change the past; only move forward to try to make a great future for Nathan. I will forever be sorry that I didn't see any signs of this or if I did see signs that I ignored them. I was focused on Nathan being healthy again and trying to make a life for us as a family and didn't realize that the only way to make him healthy again was to remove the predator living in our house. I will forever be in debt to Nathan and so very grateful that he was strong enough to live in spite of all he was put through, that he is such an awesome person and I am completely blessed to have been chosen to be his mother.
The reason that I am now explaining this is that on March 17th the Lorain County Prosecutor and Detective Andujar (our original detective) presented Nathan's case to the Grand Jury and they came back with an indictment and 4 felony counts against Mark Delcorral. He will now have to go through the legal system and hopefully they will have the evidence they need to put him away for a very long time and he will not be able to do again what he did to Nathan.
On to the news you came here to see -- Nathan is doing great. It has been a year since I've updated, and a lot has happened since then. Nathan is doing great in school -- he has the same teacher he had last year so we have had another wonderful school year. Nathan is reading even more and is doing great in Math -- he has lots of friends in school! Nathan started Piano lessons this year and was doing great, but we need to find someone closer as his instructor was in LaGrange, Scott and I are going to keep working on this. He also joined Amherst School's Special Olympics. We have had so much fun walking in the Homecoming Parade, participating in Basketball where he was able to play during 1/2 time of a Varsity Basketball game, a skills competition at LCCC and going to a Cavs game where he was able to go on the court and high-five the players after 1/2 time, bowling, swimming and roller skating. Next he will be participating in a track competition at the County meet.
Today is Nathan day and he and I have made plans to celebrate this day along with Scott's birthday by going to McDonald's and sitting in the Birthday Party seats (that's how it will be different than just going to play, according to Nathan). Then to see the movie "How to Train Your Dragon". And of course anything else Nathan feels like doing today!!
Thanks once again to everyone who has supported us along this journey!
Love Nathan's Family!!!
Tuesday, April 7, 2009 8:32 PM CDT
Yeah....I was finally able to login. If you saw the guest book you will see that I had problems getting into his page earlier. But I figured it out.
So, Nathan is wonderful and he really enjoyed his Dad's birthday & Nathan Day. We spent the afternoon shooting hoops and playing ski ball at Chuck E Cheese. We sang Happy Birthday to Scott and Nathan helped him blow out the 5 candles on the cake. Again, thanks Dad, Mom and Sarah for being there with us.
Nathan has made so much progress in the last 5 years and we are still amazed by him everyday. He is enjoying school and his teachers have helped him to learn to read. He and Scott really enjoy his reading homework and always have it done before I get home from work. He is still behind his peers academically and socially, but he has made lots of friends and they miss him if he is not at school. His teachers are so wonderful and really have an interest in teaching him and have told us he is a joy to have in class. We could not be happier to be able to tell all of the doctors how wrong they were when they said he would not have any quality to his life. This child enjoys every day and has touched so many lives with his love and kindness - that is what I call quality!
I will do my best to keep you updated on his continued progress.
Thanks for visiting.
Love,
Colleen & Nathan
Saturday, October 25, 2008 1:25 PM CDT
So, again, it's been a while since I've updated this page. I can honestly say that since my last update we have been extremely busy. I'm sure everyone knows by now, but Nathan, Scott & I are back in Ohio and have been since April. Actually we moved back a few days after my last update. Somehow I convinced Sarah to fly into Florida to help pack and drive back to OH with us. Sarah, Zoey and I were in my car most of the way with Scott and Nathan in the big truck. We got lots of help from Eric, Adrian, Wendy, Aunt Liz, Daniel, Trystan and Kenzie. Thanks to everyone for getting our huge mess of a move done!
Other than missing our parents and Sarah & Pam, we moved back because of the huge amount of trouble we were having with the schools in Florida. I thought Lorain City Schools were bad, but take that and multiply it by an entire county and you've got Brevard County Schools. I learned that Nathan had been allowed to wander around the classroom while the other students were doing independent work at their seats and the worst part is that the other children apparently didn't even notice he was doing it which leads me to believe that they were used to him being up walking around and not working. We decided that the school would be the babysitter during the day while Scott and I worked, in the evenings we would teach him. It was working well, but then we decided that we were wasting his time during the day. So, we knew that the schools here in Amherst had worked so hard with him in preschool that it would be worth the move back to get him enrolled in a school that really does care about its students. I'm sure you can imagine my surprise when I called the Board of Education to let them know we were going to be coming back and they remembered Nathan as soon as I told them his name. He was welcomed so warmly into Shupe School on his first day, there were so many people waiting for him to arrive it was amazing. They started on the first day of school giving me things that I had begged his teachers at Westside Elem. to give me (including the names of everyone who would be working with him - you'd think it was the craziest request ever). I knew then and there that we had finally made the right decision for him. Then after one full week of school and a few days, Sarah and I were playing school with Nathan and I wrote a 3 letter word on his easel and he sounded out each letter and read the word to me. Sarah and I were both in tears because we have never in a million years thought he would learn to read and he is. In fact, he is trying so hard learning his site words and the 3 letter words. I could not be more proud of this little boy; he has continued to reach beyond my wildest dreams. I am so happy that he apparently isn't going to settle for being anything but "just like the other kids". Now, he is in 2nd grade at Powers and he has two wonderful teachers, Miss Campbell and Miss Holland and an amazing "helper" Mrs. Dietz who is a retired preschool teacher (not a teenager w/no experience like his last helper). They work with him everyday on writing - with Mrs. Dietz actually working individually with him and not standing at the board, as they did in Florida, because that is how everyone else is taught. Nathan loves school again!
Scott recently bought a house in Hidden Valley and Nathan has some great friends there to play with. He spends his weekends there while I work. We also bought a house (see more pics in photo album) that we absolutely love. We are living in town now and can walk to the library, Hot Dog Heaven and even to school. I filled my car up with gas on Oct. 3 and three weeks later I just topped it off from 1/4 of a tank - it’s like getting a raise to be able to save that much in gas!
We are looking forward to Halloween, Nathan is going to be a pirate and he has the whole persona down pat - he loves to tell me he's going to make me walk the plank and Red Beard himself did not "Arrrgh" as convincing as Nathan does.
We, of course, miss everyone in Florida so much but will have to settle for a place to vacation instead of living there. We will see you all soon.
Well, its time to get ready for work. Thanks again for checking in on our boy.
Love,
Colleen
Monday, April 7, 2008 9:43 PM CDT
So, we have survived another year since Nathan suffered a Traumatic Brain Injury. I cannot believe that it has been 4 years since our life completely changed. We of course celebrated Nathan day today as well as Scott's "Larry Bird - 33rd" Birthday!! After breakfast, we went to Andretti Thrill Park (go carts and video games) where Nathan and I whooped his Dad in the first race, but the boys took me out in the second (I was taking pictures, so I might have let them win - lol). After that, we hit the local pool for a while. Nathan had a great day; much better than our day 4 years ago. He is doing great and continues to improve in his memory and learning.
Hope everyone else had a great day! And, again, thank you all for your prayers. I'm going to add pictures from our day!
Love,
Colleen
Saturday, February 23, 2008 9:26 PM CST
So, I guess its time to change my dear sister's message. I've been home for almost two months now. It took some time and patience, but I have made a full recovery from a very serious and scary illness. I've come out of it all a non-smoker which has made my dear Nathan very proud of me! He even told his bus driver that I quit. I could not have done it without him, actually this is the third time I've quit for him and this time it’s for keeps. Even two months later, he continues to tell me how proud he is and I get lots of extra hugs and kisses for being a non-smoker like him :)
Nathan is still working very hard on his school work, but it seems his teachers are not willing to work as hard. We had a meeting in Dec. to find new ways to help him and finalize his IEP which took over three months for the school to write. I have recently realized that even with the new IEP they still are not consistent in using the accommodations that he requires and deserves (took one teacher two months to get us the schedule of which letters she works with him on - appears more like she doesn't do it at all). I have recently found out that his teachers are actually "threatened" by me and since I cannot get the info I need to help Nathan at home from the teachers, we have begun to give them the info we are using at home and hope they will follow through at school. We are finding that while his school is an "A" rated school, it means they are "A" rated for Florida (which is currently the 14th ranked US state for education and Ohio is ranked #7) - our school in Amherst was much better than this district in helping students with special needs. This school has admitted to not knowing how to help Nathan, yet when I offer help (I do know the kid best) they get "threatened" and don't want the help - I've seen lots of eye rolling from his teachers at our meetings. So, we are still trying to fight the good fight - I'll never get used to the fact that getting an education for a child with disabilities is a fight!
Thanks for stopping by Nathan's site - and please sign the guest book so we know you were here!
Love,
Colleen
Monday, December 24, 2007 11:22 PM CST
Let me start by thanking everyone who continues to check this website, its so amazing the amount of people who keep checking in on us. And from my entire family we would like to wish you all a very Merry Chistmas and nothing but health and happiness in the New Year.
Unfortunaly we have a bit of sad news, this Christmas, Colleen has been very sick and as of Thursday the 20th she has been in the hosptial. I dont have every detail but she has a staph infection and is suffering serious effects from it. Wendy, Eric, Adrian, Aunt Bonnie, Meghan and Scott have been taking care of her and Nathan but as the days went by we decided the big guns were needed and my mom and dad both headed down to take charge. And I guess its working she seems to be perking up already, I guess nothing makes you feel better than Mom and Dad.
As I said the information I have is pretty limited and Im not the author my sister is, I would just like to ask that you keep her in your thoughts and we will do our best to keep you updated, She is in the Palm Bay Hosptial, 1350 South Hickory St., Melbourn Fla. 32901. You can call her at 321-434-8000 room 245.
Now about the miracle boy, he continues to do very well. I had the joy of spending Thanksgiving in Florida with him and the rest of the kids and he really is amazing.
Again thank you for all your love and concern for my family. Merry Christmas to you all.
Sarah (Nathans favorite aunt and Colleens baby sister)
Friday, November 2, 2007 9:46 AM CDT
Check out the picture pages for more Halloween pics.
Nathan has been watching Smurfs on Boomerang on Cartoon Network (they have Tom & Jerry, Popeye, the original Looney Tunes - I love it) and told me one day that he wanted to be Papa Smurf for Halloween - well I ran with that one (anything to stop him from being a Ninja Turtle again). When I told Wendy what he was going to be, she wanted Kenzie to be Smurfette (Kenz didn't even know who Smurfette was - but she's a good sport and decided to do it too). Trystan was the bad guy trying to hurt the Smurfs - but as always Papa Smurf was there ready to protect Smurfette :) We got so many compliments on their costumes - it was funny cause most of the parents knew what they were, but not many of the other kids did. One kid asked "Why is Santa blue?"
All is great in sunny Florida (hasn't been too sunny the last few days, but we know the sun will be back). We miss all you Ohio Peeps tons! We had a great time being home in Sept. It was the most beautiful weekend - I was more homesick while I was in Ohio than I've been since I moved here. I've never been away from Amherst for longer than a week, so after a year it was really great being back. If only Amherst was in Florida.....
Nathan has been to his Neurophysiologist for four behavior therapy appointments and Dr. Gorman is wonderful. He has given Scott and me some great advice to help with Nathan's outbursts and a lot of pro-active stuff to do with him. We are really working on extending his concentration and getting him to sit still longer and stay quiet longer (not an easy task). He's doing great in school - Math seems to be his strong suit - he got a 90 n his first math test - we are so proud of him!!! He's finally learning to recognize letter and we are starting on numbers too. He has an aide a different times during the day - for reading and math work and works in small and large groups for Science and Social Studies. He is still the most polite kid in the class and we always get compliments on his manners from teachers and other staff. As always Nathan touches people wherever he goes. Gotta love this boy!
Till I write again....
Tuesday, June 19, 2007 11:23 AM CDT
Nathan is doing great. He is currently in a summer school class for extra help in reading and math in the mornings. He loves hanging with his Dad in the afternoon - they are spending lots of time in the pool at Scott's. Nathan is also taking swimming lessons again and his favorite thing to do at the pool is jump off the diving board. It is quite a change from the kid who didn't even want to get in the water a year ago.
We are now seeking help from a Neuro-Psychologist who will evaluate Nathan during two sessions July 3 & 5th. We are looking forward to their recommendations to be used at home and with the school. Nathan is now recognizing letters and numbers in print all of the time. He points out every N A T & H that he sees. He is learning to spell many words his favorites are DAD & MOM - he now calls us that "M-O-M" and "D-A-D" it is great to see.
This week we are looking forward to Sarah and Joel arriving on Friday. We are so excited to spend lots of time with them. Also, rumor has it that Nana Rigo may be flying down soon :) OH...Rumor confirmed...
Have a great day!
Love,
Colleen
Friday, April 6, 2007 9:57 PM CDT
Well, in half an hour it will be the anniversary of the day our life changed forever. I would like to thank everyone who helped us in the past 3 years. What can I say about the past 3 years, they have been the best and worst of my life. There are days filled with guilt because what happened never had to happen and days filled with more joy than can be imagined. The only person I've ever known since before their birth was totally changed 3 years ago. He will never be the same, but at the same time, he is the most amazing person I've ever met. I cannot believe I could feel the same way about two completely different people, who have shared the same face. He is the greatest gift anyone, even God himself, could give to a person. Thank you. Thank you all.
Nothing in my life could make me prouder than the little person I was fortunate enough to give life to. Nathan is a complete miracle who will drive you nuts after three or four hours of non stop taling, but even after that, you can't help being amazed by him. Have you ever seen a walking, talking, jumping, summersaulting complete miracle. Thank you family, Thank you friends, Thank you strangers, Thank you God.
All of our love and appreciation
Nathan Gezzer's ENTIRE family.
Thursday, February 22, 2007 7:39 PM CST
I know it has been a really long time since I've updated, but I hear that there are still people out there who check up on Nathan. I am so happy that you are still thinking about our boy. I want you to know that not a day goes by that I don't think about carving out time to get on this computer to update, it has just been so crazy here. I forgot how much time an 8-5 job takes up in your day. Everything left in the day goes to Nathan and oh, yeah, I have to make dinner too!
Nathan is doing great. We love Florida. We have finally found some of the services that he needs and are starting to get them in place.
Nathan had an appointment with a local ophthalmologist and he suggested that we try glasses with a full prescription for Nathan's left eye. He is hoping it will help in getting him to focus with that eye and at least strengthen it to the point that he will be ready for surgery when it is available. We are working toward an appointment with the Bascolm Palmer institute in Miami. It is one of the world renowned eye centers and we are only a few hours away. We will try the glasses for now and see how he does with them.
We saw a pediatric neurologist last month also and Nathan had an MRI done on his brain. They compared that one to the one he had in June of 04 and say that his brain is stable. We were, of course, hoping that they would see the same improvements in his brain that we see in him overall, but the good news is that nothing bad is happening in his head. We are going to get a Neuro Psych consult in May to see what we can do to help Nathan's brain focus. It is possible that he will need some type of ADHD medication to help. When we were in the Rehab hospital one of the kids there called it his "stay focused" pills. I think that is the right attitude to have for Nathan's situation. If Nathan was a typical child who was over active, I would never consider giving him pills to take care of that, but because of his injury, it may be necessary.
We have found an organization that is part of the Brain and Spinal Cord Injury Association that will be helping us with Nathan's school. We are having the same type of problems here that we had in Lorain. It is so incredible to me to have to "fight" with the schools to get him the help he needs. We were told by some school officials that we would have to fight for an Assistant for him, in his IEP meeting we were told Florida does not provide one-on-one assistance. However, an attorney that we consulted gave us some ideas that might be helpful in the "fight" and that we will be able to get the services he needs. I have so much doubts about our move here because he was to have an Assistant in Amherst for Kindergarten and I thought that would carry over here, but it has not. We made this move for so many reasons that will be great for Nathan, it is just so hard to have to try to play these political games and fight a district that will not help a child who deserves it and who will benefit and be such a positive addition to the world he's in. So, as I'm sad about his school, there are so many other wonderful reasons to be happy.
Nathan has learned some very simple things since we have been here (and even though some people have told me - he's six and should be able to do those things) I still get so excited when he does them. Nathan is completely dressing himself now (I still set out the clothes, but he gets them on and almost always oriented correctly), he is completely responsible for his bath - after I wash his hair - he does the rest including, putting the toys away, getting out, drying off, picking out and putting on pajamas, he puts his own seatbelt on, has chores around the house and keeps track of them on a chore chart which, when complete, gives him 20 minutes of video game play. He has learned to do a summersault and to make his fingers work so that he can now count on them (you know, putting one up at a time). The most fun he has right now is playing "Go Fish" which my Mom taught him when he was in Ohio over Christmas break. We play every day and he beats me most of the time.
We have a beautiful house (which is way to big for the two of us, but perfect when the family visits), a nice yard and some very cute little girls in the neighborhood - it is, however, completely void of boys older than 1 and younger than 10 - but Nathan has always loved playing with the girls, so he doesn't mind. His favorite thing to do is jumping on his trampoline, or kicking the ball into his soccer goal. He took swimming lessons this fall (yes, I said fall - the classes ended the second week of November - outside). The classes start again in March, which is great for him because he was so afraid of the water before and now he loves jumping in and can even swim underwater.
So, I hope you are all doing as well as we are - and for all ya'll in Ohio and the other cold yucky states, it was in the high 70's yesterday! Beautiful and sunny - what more can you ask for?
Will update again - soon?!!
Love,
Colleen & Nathan
Wednesday, September 13, 2006 10:34 AM CDT
The Children's Developmental Center in Amherst where Nathan went for therapy is having their Annual Steak Fry on September 23 at the Eagles in Amherst. If you are interested in attending, email my Dad or Donna for tickets (I'd usually be selling them, but it's hard to find people in Florida to attend).
Last year we had tons of fun! There will be lots of prizes to win and you will be helping a great cause. All of the proceeds go to helping kids like Nathan and kids who are much worse than he is receive the therapy they need. They also have table sponsors available and they are accepting any donations. So, even if you can't attend and want to give a little back to a very worthwhile cause, just let me know or ask my Dad and Donna about it and we can point you in the right direction. Thank you in advance!
Nathan is doing great - I received an email from his teacher today that said she's been working with him one-on-one until his aid is hired and that he is VERY SMART (her words, not mine - well, I completely agree - but I'm prejudice). She also said she is very happy with how quickly he is learning his letter sounds - they do one letter each week - the only trouble I'm having is reminding him of the letters from the previous week. He learned M last week and was an expert at words that start with M, but since they started B this week, the M words are already being forgotten - but we are working on reinforcement even after he's "learned" the information - on-going work!
Have a great week!
Love,
Colleen
Monday, August 14, 2006 8:25 PM CDT
We made it to Florida! We have been living with Adrian since July 25th. I am so grateful to my wonderful brother for giving us a place to start our new life. It is so nice to be close to him and Eric and Wendy and the kids. Nathan could not be happier to have his cousins around. It has been great for him to be around "typical" children more - they have already taught him so much. He has been enjoying the pool and of course their trampoline. But even more than that, we are all learning about each other. My brothers are helping me to teach Nathan things that I hadn't even noticed we were lacking. This is a whole new FRESH start for us.
Nathan and I miss everyone in Ohio extremely. It is not easy to live in a town where you only know 7 adults, but this is really the new beginning we have needed for a very long time. He is really looking forward to his Dad and Jamie being here. They will be here by Monday, Aug 21! My Mom is coming to visit and will be here for my birthday! And, Adam will be here on Aug 24th for the weekend - we have lots of visitors coming to keep us occupied! Once I find my own place it will be open to all of you wonderful people to come visit! But, don't forget the old saying - houseguests are like fish - they both stink after 2 days! HA! I'm sure Adrian is wishing I'd listen to my own advise!
But, the most exciting news is that Nathan started Kindergarten today! I cried just walking with him to his class and he cried when we left. But, he must have had a great day, because when Trystan saw him walking toward the bus, he heard him say "I'm not ready to go home"! He rode the bus home with Trystan and Makenzie and will ride it to school tomorrow. He loves that part! His teacher is Mrs. Cole and Nathan says she is nice. Check out his photo album to see pictures of his first day!
Thank you all for your support of Nathan and I and our family!
Love,
Colleen & Nathan
Tuesday, July 11, 2006 10:49 AM CDT
***CHECK OUT NEW PHOTOS FROM OUR TRIP TO CEDAR POINT****
*7-17-06 Update*
Nathan and I went to Cedar Point Friday with our great friends - Kim and Macy. We had so much fun. Nathan and Macy were very brave and went on every ride they could! Thanks Kim and Macy for making new memories with us before we leave! We had such a great time.
Yesterday evening a new family member was brought into this wonderful world! My cousin Nichole and her husband Matt Beale welcomed their first baby Allie Nichole. We are so very happy for the new parents. Cole, I know you are going to be a wonderful mother and Matt, I think we are going to have a Daddy's girl on our hands (someone to watch the Buckeyes with you!). We wish you all the very best. I'll put up pictures as soon as I get some emailed to me!
I'm pretty sure most of the world already knows, but it is time to make it official - we are moving to Florida! Nathan and I are leaving on July 24 and will be staying with Adrian (only for a little while - not 5 months). I will be able to continue my school there and hope to get a job in a school - I've been told by the principal of one of the Brevard County schools that they are always looking for Teacher's assistants. Nathan will be going to school with Makenzie and Trystan (he is so excited about Kindergarten and riding a bus to school). Scott and Jamie have transferred their positions with Fed Ex and will be moving in August. They are planning to get an apartment close to Adrian's.
I am going to miss so many people in Ohio who have helped me in so many ways in the past two years. Your love and support is something I will never forget. Thank you all!
Love,
Colleen
I'll put up a new email address when I get one.
Friday, April 7, 2006 10:15 PM CDT
**** CHECK OUT NEW PHOTOS FROM OUR TRIP TO FLORIDA ****
Well, we have survived another year. Today is the second anniversary of the day Nathan was hurt. It is also Scott's 31st birthday!
We braved the weather and went to the Indian's home opener today! We had a great time. Scott, Nathan and I sat in the nosebleed section and froze our butts off, but it was fun! It was a great game. Thanks to everyone who was at the Eagles last Saturday and chipped in so I could win the tickets! I love you all!
After the game we went to Dave and Buster's to play the games. Nathan always loves going there and always comes home with tons of stuff! So, needless to say, this was a much better day than the one we had two years ago! Thank you all for your continued prayers Nathan and his whole family appreciate you.
Tuesday we are leaving for Florida. Scott, Nathan and I will be visiting Adrian, Eric, Wendy, Daniel, Trystan, Kenzie and Aunt Bonnie! We can't wait to be there. Hope everyone has a wonderful Easter.
Love,
Scott, Colleen & Nathan
Wednesday, February 8, 2006 3:33 PM CST
Well, little Nathan has finally lost his first tooth. My Mom pulled it out on Monday 02-06-2006! Then at therapy that same day he lost his second tooth! He was very excited that the tooth fairy brought him 2 $2 bills! It's hard to tell because his "adult" teeth are already growing in, but I've added photos.
Scott and I went to a seminar about Cortical Visual Impairment (CVI) on Friday and Saturday last week. It was so incredible to finally find people who knew what we've dealt with over the past 2 years. His Orientation and Mobility Specialist was there with us and she was as excited about the information as we are! His vision is getting much better all the time. Yesterday while we were reading 101 Dalmatians and I had him pick out the pictures of Cruella Di Ville and he was able to pick out every one of them (this is not one of his favorite stories, so it was really nice for him to pick out the character). I will be giving his teacher's a letter tomorrow to request a Teacher for the Visually Impaired (TVI) for him. The people from the Cleveland Sight Center suggested it as well as the Doctors who put on the seminar. They also suggested he uses a light box to help him learn letters and words. When I told my Mom about this, she told me she has one and gave it to me on Monday, I took it to his teacher and she was excited to get started using it. His teachers are extremely amazing and will do whatever we decide will help him. Last year we had a lot of egos to deal with from his teachers - if it wasn't their idea, they didn't want to do it. This year his teachers welcome our suggestions and even ask for them, together we are giving him a better education!
I think that's all for now. I'll update again when something exciting happens!
Love,
Colleen
Monday, December 26, 2005 6:06 PM CST
Our family would like to wish your families the Merriest Christmas and Happiest New Year ever!
Check out more photos from Christmas morning in the photo album. I think Nathan's favorite thing under the tree was his dog's new cage! He asked Scott to help him open presents because he saw him help "baby Nathan" on the Nathan movie. It was very cute!
We all had a wonderful Christmas. Thanks to Sarah & Joel for opening their home so we could all be together. It was a great evening, even if I didn't win at LCR! Ha! Oh well, Merry Christmas to you all!
Love
Colleen, Scott & Nathan
Friday, December 2, 2005 8:44 PM CST
Thank you for your prayers for Bonnie. I have some wonderful news to report. She was first responding to voices by moving her eyes. Then they removed the neck brace and she was able to nod and shake her read in response to questions. On Sunday when they took the tube out of her throat she said "water" then her daughter asked if she knew who she was Bonnie answered "Jan". This is an amazing thing since they were told that she has a brain stem injury and what we know about them from Nathan's illness is that they are the worst of all brain injuries. Bonnie is still in ICU and still has a long way to go, but I'm sure with your prayers and the love of her family more miracles are possible.
Thank you again!
Oh, Nathan is doing wonderful - he loves his school and appears to be seeing even better!
Happy Holidays
Love,
Colleen & Nathan
Wednesday, November 16, 2005 9:10 PM CST
I find myself once again in need of prayers. I hope some of you wonderful people who prayed so hard for my son can once again find it in your power to pray for a member of our family who is in critical condition.
On Monday, Donna's Mom, Bonnie Haskin, was in a car accident with a school bus in Florida. When she was taken to the hospital they found a collapsed diaphragm, and problems with her spleen and liver. Those things were quickly fixed with surgery. They then found extensive bleeding on her brain (the entire left side) and damage to her brain stem. They put a shunt in her brain (like they did for Nathan) to relieve the pressure and blood. She has been on a ventilator since Monday. They removed the shunt today and her eyes are open. She has had some spontaneous movement. The first Neurological tests showed negative results.
Dad and Donna went to Florida on Monday as did Donna's sister Karen. They are with her along with many other family members, talking to her and taking care of Junior, Donna's father.
Bonnie is a wonderful woman who has a lot of family and friends who need her around. We know the power of your prayers and hope you can once again extend yourself for someone who needs your help.
Thank you in advance for your help.
Love,
Colleen & Nathan
Thursday, September 8, 2005 8:30 PM CDT
Well, our little miracle has begun his second year of pre-school. He is attending ABC Preschool at Shupe in Amherst. He loves it already! Last year he threw himself down on the carpet and cried when we left and this year, I could barely get him to kiss me goodbye. He can't wait to go each day (well, there have only been two so far). He will be going fewer hours than last year. Last year he went from 9:30-2:45 M-F; this year he will go from 12:45-3:30 M,T,Th and Friday. As long as he still loves it at the end of the year! It will be really nice because when he starts Kindergarten next year his preschool teachers will come to his class the first week to see how he's doing and make him feel more comfortable. ***check out the photo album for more pix from his first day***
Scott and I want to thank my Dad, Mom and Sarah for taking Nathan to school and for watching him while I'm in school this semester.
Just a week left until the Children's Developmental Center's Steak Fry to benefit the center. If you need any information please email me colleenwilson@adelphia.net. Thank you to everyone who has already made donations and purchased tickets. This is going to be a great time and very worthwhile!
Love,
Colleen & Nathan
Tuesday, August 16, 2005 8:53 PM CDT
Well, I've finally been able to add the photos from our Florida trip, check out the photo album to see all the fun! Thanks Dad and Donna for taking all of us and putting up with us for over a week.
Nathan is doing wonderful. I'm working on getting him enrolled in the ABC preschool at Shupe in Amherst. He is very excited about going to a new school. He finally has figured out how to ride that wonderful two-wheeler he got for Easter. Today at therapy he did awesome on their bike, Kendra was very impressed. Nathan has also been working on his baseball skills. He can hit a ball off a tee very well, and is now working on hitting a pitched ball - we started with a large plastic ball and he did great with that, the past few days he's been hitting a softball sized wiffle (is that the right spelling?) ball. He's getting ready to come watch Aunt Sarah, Uncle Joel and I play softball tomorrow and now he thinks he can play too - not sure how that's going to go over, but I'm sure he'll do fine as long as he has a ball to occupy him.
The Children's Developmental Center in Amherst where Nathan goes for therapy is having a Steak Fry on September 17 at the Eagles in Amherst. If you are interested in attending, I have tickets available, just send me an email - colleenwilson@adelphia.net This will be a very fun night with lots of prizes to win and you will be helping a great cause. All of the proceeds go to helping kids like Nathan and kids who are much worse than he is receive the therapy they need. They also have table sponsors available for either $25 or $50 and they are accepting any donations. So, even if you can't attend and want to give a little back to a very worthwhile cause, just let me know and I will take care of it for you. Thank you in advance!
So, after we left Florida, Eric and Wendy and the kids went to visit her Uncle Art and Aunt Sue to find out about the business they have and were supposed to come home to decide if it would be something they would like to do and possibly move to Florida in November. Well, the opportunity turned out to be better than they expected and they have decided to stay there. Eric is home for the next week to pack up their house and rent it while Wendy is getting their Florida house ready to move into and the kids have been enrolled in school there. We are going to miss them so much, but I am very proud of them for doing what is best for their family. Guess we have a great place to vacation now! Christmas in Florida sounds good to me (so does winter in Florida, but I think Scott would miss Nathan too much!) Anyway, Eric and Wendy, please remember that we love you all so much and we will miss you like crazy! Nathan and I wish you all the most success possible. We love you all.
This year is going to be the first in 7 years that my nephew Daniel and I won't be spending our birthday together. Daniel, I will be thinking of you all day Thursday and wishing you the happiest birthday - hey, how could it get better, you are in Florida! I love you Peanut.
Hope everyone enjoys the new photos!
Colleen &
Nathan
Wednesday, July 20, 2005 11:02 AM CDT
We are in Florida - Nathan is having a great time. We all are! I've added pictures to the photo album from Nathan at the airport and on the plane. I'll add more, but didn't want to get rid of the ones from his birhtday, yet.
check out new pics in the photo album
Happy Birthday NATHAN!
Well, that amazing little boy has turned 5! It is so hard to believe that he is already 5. He woke up this morning with a huge smile on his face and was ready to start his birthday. He keeps calling himself my birthday boy! He has been on the phone most of the morning with everyone wishing him a happy birthday. Aunt Pam has already been over to see him - she got her motorcycle license today! Congrats Pam. Nathan got a computer and some games to use in his play room (he asked me if I was 5 and when I told him I'm 30 he said that I can't use his computer because you have to be 5 to use it). He is so excited - I hope this helps him with his concentration skills and vision.
We are having his party tonight and he is so excited because he is having a Hulk cake and Hulk decorations - I'm working my hardest to keep him from opening his Piñata before the party starts!
Hope everyone has a wonderful week! I probably won't update again for a while, we are leaving for Orlando next Saturday and won't be home until August 9. I'll put up lots of photos after that.
Love,
Colleen & Nathan
Tuesday, June 7, 2005 11:29 AM CDT
Yesterday was Nathan's "bridging" ceremony from his first year of preschool to his second. It was a great program. Scott, Jamie, my Dad, Wendy and Makenzie and Sarah were all there. They did a slideshow of the year and we were all in tears. It is so amazing to think how far Nathan has come in this past year. We have had our problems with the school system and personal issues with the teachers, but they have really made a difference in Nathan's life. We are looking forward to next year when Nathan will begin school in Amherst at the ABC Preschool. It has more opportunities for children with disabilities. He will get more specialized lessons and he really needs that before he can make the move to kindergarten. The Lorain City School District does not have the money or teachers necessary for the pre-school classes to have itinerant classes (music, gym, art, etc) and this is something that I believe and have learned this past semester in my own classes that is very important (especially gym time) for preschoolers. So, we are happy that next year he will be in a place that will better meet his needs including the basic needs that all children need and Lorain cannot provide.
My Dad is doing well. Thank you all for your prayers and words of support. He did have a minor stroke and has actually had even more minor ones in the past that showed up on his MRI. He has a very good doctor who is concerned about him as we all are.
My Dad was also nominated to become the new president of the Eagles a few months ago and yesterday was the installation. So, it's official - he's the new Worthy President of Amherst Aerie 1442 F.O.E. Congrats Dad we know you will do a great job! You can now just call him POTE (President of The Eagles - HAHA).
Nathan is doing very well. Thursday is his last day of school. We are both looking forward to a long summer together. He will only go to therapy on Tuesdays for an hour and the rest of the summer will be spend running and playing and lots of swimming - something he hasn't been able to do for the past 2 years.
So, I wasn't sure if I should add this last part, but once in a while I do need to toot my own horn. I received my grades a few weeks ago for my first semester at LCCCC. I had taken 5 classes which included a Pilates class (I know, easy A - and it was), 3 Education classes (these were a ton of work) and Psychology and received 5 A's. I actually made the Dean's list. I'm quite proud of myself and really can't believe I did it. I told my family that if I had known how good it would feel to get this kind of grades, I might have done it a long time ago! The truth is that I have the best motivation in the world, my Nathan. The more I know about teachers and teaching the more I can help him and understand what his teachers are doing.
My Dad and Donna are taking all of us kids and grandkids to Florida at the end of July for a week of fun and sun, so we won't be around then. It is the vacation for Makenzie and Nathan turning 5. We all decided to go this time (there was no way I could let Nathan experience Disney without me). It is going to be hot, but they have rented a 7 bedroom house with its own pool and Jacuzzi and most importantly (to the kids at least) a game room! We may never leave the house! We are also planning a weekend at Kelly's island for camping with my Mom and Gazie. This is going to be Nathan's best summer - he's going to be looking forward to school starting so he can rest a little!
Hope everyone has a great summer - I'll write when anything new happens!
Love,
Colleen & Nathan
Tuesday, May 10, 2005 10:43 PM CDT
Well, we need to once again ask all of you wonderful people who prayed so hard for Nathan to please say a prayer for my Dad. Today he was admitted to Allen Memorial Hospital in Oberlin. He may have had a minor stroke yesterday. We are waiting for the test results from the hospital. Yesterday after working in the sun, he became dizzy, had trouble speaking and had pain in his right arm. He seemed alright when we saw him at the hospital today, but was definitely tired. Please take a moment to say a prayer for positive test results and for good health. My Dad is so very important to me and Nathan and to our entire family. While we were in the hospital the Chaplin walked by and he was actually the same Chaplin that was at the Cleveland Clinic while Nathan was there. He said a prayer of Thanksgiving for Nathan's recovery and a prayer for Dad. It was really nice to see his face under somewhat better circumstances.
Nathan is doing well. He is looking forward to Summer Vacation (30 more days of school). We are planning a trip to Florida in August and a camping trip for the 4th of July. This is going to be a much better summer than the last two were. We are already setting play dates with his friends from school. He is really going to miss them, but hopefully we will have lots of time to see everyone.
Hope everyone is doing great. Please remember to say a prayer for Jim Wilson. You are so wonderful at this!
Love,
Colleen & Nathan
Thursday, April 7, 2005 10:30 AM CDT
I wrote this journal entry yesterday, but for some reason it did not work when I added it. So, here it is!
So, tomorrow is the 1 year anniversary of Nathan's injuries. Wow, it is hard to believe it's already been a year. Some days it feels like 5 years. There are times when a smell reminds me of something from the two months we spent in the hospital and it feels like it was yesterday. I have been told by so many people that they cannot believe what we've all gone through. They wonder how we did it. I can say that I have no idea how we did it either. The only thing I can think of is that we had each other. We had this amazing support group. These people who were there for us at all hours. And, I know we could not have come this far without each of you.
So, a year ago, I was invincible. Nothing bad could happen to me or my family. We were just living our lives and dealing with the everyday challenges that it brings. And, BAM it smacks you right in the face how fast it can all change. I was standing at work on April 7, 2004 about 6 p.m. talking to my new co-workers (it was my 3rd day on the job). Ironically, we were talking about all of Nathan's eye surgeries and how much he had been through and why would God let that happen to such a small boy. Then the phone rang. When one of the guys I worked with told me it was for me, my chest tightened up, it could only be bad when someone calls you at work. Well, it was worse than I could ever imagine. I was told that Nathan was being taken to the emergency room because when Scott came to pick him up he had been throwing up. I immediately got into the car and started driving to the hospital. I remember thinking "They are so overreacting, you don't take a kid to the emergency room just cause he's throwing up". The truth was they didn't tell me how bad it really was. When they called to tell me not to go down Cooper Foster Road to the hospital cause it was closed I could hear Nathan in the background moaning. I'll never forget that sound. When I got to the hospital there were, what seemed like, a ton of people working on him. This doesn't happen at Lorain Community Hospital. It was truly a scene out of ER. I walked right next to him and started talking to him. He was grinding his teeth and I tried to put my finger in his mouth to make him stop, when I did, his lips were ice cold. He was taken to have a CAT Scan done and we walked with them. He was still moaning and grinding his teeth, but not responding to anyone. When we got back into the room, a nurse (I really wish I knew who she was cause I'd write a really nasty letter about her) told us the doctor would be right in to give us the results and that it wasn't good - WHAT? That is all I could think. I dropped to my knees and began to yell at her, "What is it? Tell us." I can't remember if she told us or if the doctor came in then and told us he had a bleed on his brain. Those words, what did that mean? They told us they were going to life-flight him to Rainbow. We were taken to a small room and told to wait there while they sedated him and put him on a respirator. It seems like a dream right now to think of all that happened. They told us that the calmer parent could ride in the helicopter which was Scott and I would have to drive there. I called my Mom to tell her and I remember her screaming at me "What did you do to him?" She was as hysterical as I was. We were then told they would take him to the Cleveland Clinic since he had been a patient there before. I then called my Dad and between the two of them they called everyone else. I was allowed to go into the room and kiss him before he got on the helicopter, leaving that room was one of the hardest things I've ever done. I left and got into the car and while we were driving to the Clinic we saw the Helicopter fly over us. I couldn't stop from thinking that my baby is not supposed to be up there without me. But, his Dad was with him. When we arrived at the PICU he was just being brought in too. While the nurses started to work on him there he was still struggling when they put a needle in him. I remember telling then that he hates IV's. At this point we had no idea how bad it was or how bad it was going to get. There were times that night when we were not allowed in his room. It wasn't until both of my brothers came to the hospital after 11 at night that I realized how bad it was. My Aunt Liz was our translator for what the doctors and nurses were telling us. She finally looked at me and said "He's very sick". When we were in the room, the nurse who was with us explained what was happening. That is blood pressure was very low and they were giving him all the medicine they could to bring it up so his blood would make it to his brain. Just before 7 a.m. she told us they were weaning him off of some of the meds and he was doing better. We had to leave the PICU between 7 and 8 so the nurses could give reports and do shift change. We went into the lobby and fell asleep. At 8:20 my Uncle Brian came and woke us up and asked how we were doing. We rushed back to his room cause he had been without us for over an hour. When we got into his room the doctor told us Nathan had just gone into cardiac arrest and they had to do chest compressions on him to restart his heart. Again, all I remember thinking is "WHAT?" Well, it happened two more times that day. Doctors immediately began working to put him on a heart/lung bypass machine called ECHMO. They talked to us about a possible heart transplant and another machine that would have to be flown in from Texas since there are only two in the world. Nathan was placed on ECHMO even though the risks of the blood thinners were so great because he had a bleed on his brain and it was not known if the bleed was active and if it was the blood thinners would make his brain bleed out. If they didn't give his heart a rest, it would stop and his entire body would shut down. We were faced with knowing that if we did the procedure, he could die and if we didn't he could die. So, we did it. At this point people started praying for Nathan and still haven't stopped. And from the time he was placed on ECHMO he started getting better, slowly with lots of different set-backs along the way, but he was getting better. We received news a few days later that he was brain damaged and would never walk or talk again. That he would be a vegetable. We didn't care, as long as he was alive. We could make it through anything. And we have. This boy is a miracle. He made it when doctors thought he wouldn't and some thought there probably wasn't a reason to save him, that the quality of his life would be so poor there was no point. Well, thank God that they did. Cause his life will be filled with happiness and more love than any child has ever known. It has been an incredible year filled with tears. But, this year has taught me just how good people are. There are people out there who have helped us more than I would ever have imagined. Complete strangers who have never seen Nathan or Scott or I, have donated money, time and most importantly prayers to us. Thank you all!
Tomorrow is Scott's birthday. Oh, did I mention it's his 30th birthday? He is the greatest father in the world. I could not have asked for a better man to be my son's Daddy. Scott and I have grown so much from this experience and have learned that more than anything else in this world Nathan needs the two of us. He works with me when I need help. He does everything he can for his son. Thank you Scott for being so wonderful! You really are one of my best friends and you always will be! We will make this a much better birthday than you had last year! I guess that's not going to be hard to do!
Hope everyone has a wonderful week! I'll write more later
Love,
Colleen & Nathan
Sunday, March 27, 2005 9:49 PM CST
I hope everyone had as wonderful an Easter Day as we did. I think I can speak for everyone in our family when I say this has been the best Easter ever! We had so much to thank God for today. It hasn't been a year since Nathan's injuries, but it was last Easter when he was taken off the ECHMO machine, had the bolt in his brain removed and was taken down for a CT scan. This is the day they told us our son would be permanently brain damaged. Last Easter Sunday we were told that if Scott and I decided not to have them take the Bolt out and put a catheter in that no one would blame us for not putting Nathan through another procedure, that he had already been through so much. They told us if we did not decide to go through with this procedure that he would die. That was last Easter. Thank God for Nathan, thank God for the doctors, thank God for our family. I had to walk into a room full of people who love my son and tell them that he would probably be a vegetable the rest of his life, that he may not walk, or talk ever again. I told them that none of that mattered as long as he lived. God put his faith in all of us and gave Nathan back to us. Thank you Lord for giving me a second chance. Thank you for giving me another Easter with my son.
That was last Easter. This Easter morning Nathan woke up and came and woke me up. His Dad and Jamie stayed with us last night so we could all be a part of his Easter morning. Nathan found his Easter basket very quickly and was so happy that the Easter Bunny got him Hulk Bubble bath! Then he went to let his puppy out and discovered that the Easter Bunny also left him a Spiderman Bike (with matching helmet of course). He was very pleased! We all got ready and took Nathan to Church on the Rise in Westlake, we met Aunt Pam and Grandma Gezzer. It was a very nice day to be spending in church. After church it was dinner at Uncle Adie's house. The whole gang was there. Almost everyone who was with us in the family room at the Cleveland Clinic was at Adrian's house. Nathan ran around and found Easter Eggs with his cousins Daniel, Trystan and Makenzie. He played and loved as hard as he ever does. He is a miracle to say the least! He is our miracle. As we come closer to the 1 year anniversary (April 7) of Nathan's injury I cannot begin to thank everyone enough for your prayers this past year and your support. I hope everyone had a wonderful day and continue to hold your family and loved ones close as we all know how short life can be and how quickly it can change.
God bless you all.
Love,
Colleen & Nathan
Wednesday, February 23, 2005 9:21 AM CST
CHECK OUT NEW PHOTOS!
3-17-05 HAPPY St. PATRICK's DAY!!
2-27-05 ****UPDATE****
We took Nathan to his neurology appointment yesterday. Dr. Rothner asked all of the usual questions (since I saw Nathan last has anything changed either neurologically or otherwise for the worse? - Answer NO, just getting better) then he told us that a Grand Round Table discussion was held the day before on Morbidity and Mortality and Nathan was the subject of the discussion. This is the second time he has been a topic during a grand round table discussion, the last time was when he was having increased intracranial pressure in August of 2003 and they talked about the swelling of his optic nerves and retinal detachments. Dr. Friedman (the in-patient Pediatric Neurologist who was Nathan's doctor while he was in the ICU) came and told us about the discussion that they used the report from his September appointment and that one of the points they discussed was his being placed on ECHMO while he had a bleed in his brain, which is not something they recommend because of the possibility of the brain bleeding-out, and that they hadn't expected him to live and if he did they didn't expect much quality of life for him. He told us they would like to take a video of him for their next Round Table. So, we let him. He had Nathan walk around the room, touch Dr. Rothner's nose with the index finger of each hand (he missed a little with the left, but came close) and he got to sing his "I can spell red" song as well as recite the "Pledge of Allegiance". We will go back in 6 months for another check-up, but Dr. Rothner says all is well for now! They are very proud of his recovery as we all are.
Well, I am such a bad daughter. I have been so incredibly busy with school, Nathan, our Puppy and of course our bathroom project that I didn't sit my butt down and write my Happy Birthday journals for our February birthdays. This is such a busy month for us. My nephew Trystan was born on February 17, 1999 - it is amazing to realize that he is 6 years old. Trystan is such a caring boy. He loves video games and for years I've been amazed watching him, he can and could do things on the games that you would think you would have to know how to read to do, but he figures them out. His imagination is incredible, he plays with PowerRangers, GI Joe and any other "guy" he can find. Him and Daniel can play for hours with their guys and not bother anyone. They are even nice enough to let Makenzie and Nathan play once in a while. I have never met a kid who appreciates people the way Trystan does. I brought a bag of pop can tops for him and Daniel to take to school and they were so happy. You would think I bought them the best toy in the world instead of some aluminum pieces. I hope you had a wonderful birthday Trystan and thanks for always being a great cousin to Nathan and nephew to me! We love you thiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiis much!
This month has also been the birth month for my two step-parents, Donna and Gazie. Donna, what can I say? We have had our differences in the past, to put it mildly, and I never would have believed how easily those were put aside once Nathan was born. You are a wonderful grandmother to my son (and the other 3 kids as well). You put them first no matter what your plans are. We know you are always thinking about them - as Dad would say "You can't go into a store without picking up something for those kids"! You have turned your home into a home-away-from-home for all of our kids and have opened the doors to it for us all. I can not even begin to thank you enough for all you've done for Nathan and I since he became sick. You thought of everything to bring to the hospital. I'm pretty sure my back would still be hurting if I had to sleep on the floor or couch during our two weeks in the ICU - you had such a great idea to bring your air mattress in, what a difference that made. You brought water and food and made sure I had everything I needed, from a toothbrush to clean socks. And, you were always willing to stay there with us even when your bosses would have liked you at work. Donna, I know it's a little late, but I hope your birthday was as wonderful as you are!
Gazie, where do I start to tell you how much I appreciate you? I'm sure you wish you had sold this house to anyone else, it has become your nightmare I'm sure. Between my clogged bathtub to new countertops and sinks. Anything we need you are always here to do. I'm pretty sure the world knows how handy you are and also knows how willing you are to help anyone who needs it, but there are some incredible things about you that, I think only a child brings out in you. I know that there are times when Nathan is staying at your house when you use it as an excuse to get out of the house, but whether you tell anyone or not, I also know that you spend more time home when he's there. You are so special to him. Who would have thought that on the first day he spoke, after being silent for 6 weeks, that he would be belting out "music" on his harmonica with you? You have given him a special gift that he will never forget. He loves to sit on your lap or next to you and just blow away on his own harmonica. You made him laugh when we didn't even know if he was inside his own head or not. You gave us hope, just because you talked to him. You also crack us all up with your stories and I feel so lucky that Nathan and I have you in our life. When we were growing up, we had Papa Mitchell who was our handy man and it wasn't until he go older and more mellow that we learned what else he had to offer, thank you for giving that to all of us and to Nathan and we didn't even have to wait until you were old and senile! We love you so much and are so grateful to have you as a huge part of our life!
Well, a little late, but at least it is still February, right? Well, it's time to get back to my homework now! Oh, did you want to hear something about Nathan? He is doing even better in school. A few weeks ago he came home on Tuesday and was singing a song about spelling Red - we sang it together for a while (I thought it must have been something they did a few weeks ago, cause he doesn’t usually tell me things on his own that happened recently - bad short term memory). When I got to school the next day to pick him up, the song was hanging on the blackboard. I asked his teacher about it and she said they had just started it on Monday! I was so excited, he remembered it from just the day before. Sometimes I wonder if we are wasting his time with pre-school right now, but then he goes and amazes me with something like this! He has a follow-up visit with his neurologist tomorrow at the Cleveland Clinic, I'll let you know what they say, but usually it's just a routine visit, then they schedule an MRI.
Have a wonderful week! Please keep praying for all of the sick kids, I know how your prayers work and there are a lot of them out there who need the help!
Love,
Colleen & Nathan
Friday, January 28, 2005 11:53 AM CST
I know, it's been a really long time since I've updated. I'm so sorry, but life has been really crazy around here. I started school and am taking 5 classes which are keeping me busy, on top of that we began remodeling our bathroom last week. My brother, Adrian put in a new ceramic tile floor and between my Dad, brother Eric, Mom and Gazie someone has been here most of the time helping with something. I have the best family in the world! They are so incredibly helpful, and even if it is not a project they've ever done before, they all seem so willing to give it a try to help us out!
Nathan was fitted for a contact lens a few weeks ago and received it last week, so he and I have been fighting over putting it in and taking it out. I keep telling him that if he'd sit still and stop squirming around it wouldn't hurt to do it, but he doesn't understand that, all he can see is that I'm trying to put my finger in his eye or some foreign object. Wednesday night after a particularly hard time taking it out, he said to me "I'm sorry it hurt Mom" could he be any sweeter? We are going to give him another week of wearing it then begin patching his right eye so he is forced to use his left which will build up the muscles in it so he will be ready for the surgery we are hoping to get for him when he is a teenager. We have been told by a few doctors that you only have until kids are 7 or 8 to strengthen their eye, otherwise you loose it. We won't let that happen to Nathan!
School has still been a fight for us. We had an IEP meeting (IEP is Individual Education Plan - it is a legal document that contains different things Nathan needs to receive his education) on Wednesday and made some headway with the school. It still seems that his teacher has been fighting us, as if she doesn't want to do the extra work it takes to ensure Nathan gets the best education. Some suggestions were made to her by Nathan's therapist and she just didn't do them, for whatever reason. It wasn't until the therapist came back and made the changes herself and I talked to the principal that these things have continued. One of them is to get him a different chair and keep it in the same spot when he's eating (closest to the garbage) so he will not forget where he was sitting. We should begin receiving a daily communication from her on Tuesday that will help us to continue what is happening at school at home.
Anyway, I've got some school work to get to. Have a great day or days until I can update again!
Love,
Colleen & Nathan
Friday, December 24, 2004 10:20 PM CST
Wow, can it really be true that Christmas is less than an hour away? It is amazing how quickly this year has gone. I suppose what they say is true, Time flies when you are having fun!
Today I was watching a soap opera (I can just hear the disappointed sighs, get over it - I like them, they are a great escape - normally) - All My Children, incase anyone saw it - you don't have to admit it, but at least you'll know better what I'm talking about. Anyway, a girl on the show is in a coma and today centered around all the different people in her life who may hate each other or at least have their differences were saying prayers for her to get better and sitting around talking about what an amazing person she is and how she deserved to live. I couldn't help feel as if I'd been there living out that very scene not long ago. It really brought back what we had all be through with Nathan's illness. Everyone asking for a miracle and coming together no matter what our differences may be to help save one precious little boy. Asking for a miracle, which we were lucky enough to get. The think that touches me the most is how everyone has sort of adopted Nathan as their own miracle. I want everyone to know that we are happy to share his warmth, caring and truly amazing self with everyone of you. I want to again thank you all for all of your faith and prayers. I can't imagine where I would be or in what condition if we had not been granted our Easter Miracle! Please remember when you are spending your time with your family and loved ones how quickly lives can slip away and cherish everyone you love with everything you have. I know I've definitely learned that lesson.
So, tonight as my son is tucked all snug in his bed while dreams of sugar "plumbs" dance in his head we wish each of you the Merriest Christmas and to all a good night.
Merry Christmas - Happy New Year
Love,
Colleen & Nathan
P.S. guess you can see from the new photo that Nathan was a good boy this year and Santa brought him a puppy. This is Nellie - she is a lab/shepherd mix - she is 10 weeks old.
Tuesday, December 14, 2004 11:43 AM CST
On Monday, November 29, Nathan had a follow-up MRI at the Cleveland Clinic. His neurologist was out of the office, but the nurse there gave us the report stating that Nathan's level of fluid in his brain is less than it had been in August. The series of strokes that were caused by the lack of oxygen in April are the same as before (no change is good). There is also a new spot on the back left side of his brain that is spinal fluid which is normal for the type of injury he sustained.
On December 6 he had an exam under anesthesia to check his eyes for a need for glasses. Dr. Traboulsi at the Clinic has always had a negative outlook in our experience. He said that Nathan did not need a prescription for his right eye which will apparently continue to get better as it has been. However, we have been advised by two other eye doctors that Nathan will need a contact lens for his left eye (which has undergone 6 different retinal surgeries one removing his lens) and that we should patch his right eye to strengthen his left. Dr. Traboulsi basically told us we would be wasting our time doing that that there was a zero percent chance of helping his vision. He then stated that if it was his kid he might do the same as we are. He told us that there are chances of infection and cornea ulcers. Scott spoke with his cousin Jamie and was told that Jamie's wife Mandy had cornea ulcers from wearing her contacts and she had to use drops for a few days and not wear her contact for a while. It seems that cornea ulcers are something that are possible in anyone who wears contacts. We have an appointment on January 6 in Sandusky with the ophthalmologist that my friend told me about. Hopefully they can give us a better opinion.
Nathan has been having some trouble in school recently. He missed the two days before Thanksgiving break which meant a week off, as well as days off for the two appointments I talked about earlier. He went back after those breaks and is having a harder time sitting still and listening as well as feeding himself - he has been just sitting there waiting for someone to do it for him. His teachers have decided to back off of their help for him to see if this makes him more independent. The first day he came home with food all over himself - it was such a mess. He was left to stay in those clothes from lunch at 12 until 2:45 when I picked him up, that was very frustrating for me because I would not want to stay in stained soaked clothes for over 2 hours as well as the fact that he has scars on his chest that could be irritated by the wet clothes. I took Nathan to the principal at that point and showed him the clothes, he has called the head of special needs at the school district and we are to have a meeting this week. I have also contacted a Parent Advocate for Special needs kids who gave me a lot of good information. She is going to look over his IEP (individual education plan) and let me know how it can be revised to better help Nathan. Apparently the IEP is a legal document which should be as specific as possible to suit Nathan's needs. I didn't know that I could actually write the IEP and include everything that Nathan needs. I didn't realize what a fight it would be to get the school district to help him. I thought they would be more compassionate to helping a child stay in the mainstream class. It seems that the district receives a good amount of funding for a child who is determined to have special needs, but they do not want to spend that money on the child. Not only is his IEP not specific enough, but it also isn't being followed at this point. He is supposed to have a vision specialist helping him 1 day a week for 1/2 an hour, but at this point noone has been in. His itinerate teacher has only been there 3 times since original IEP meeting in October. She is supposed to be there once a week also for 1 hour. It is becoming extremely frustrating to deal with a system that doesn't seem to care about the needs of the children.
Nathan has asked Santa for a puppy for Christmas. If anyone knows where Santa can find a nice lab/mix puppy before Christmas feel free to email me and I will forward the message to him. Thanks
Have a great week!
Love,
Colleen
*** Check out new photos of Makenzie Wilson donating her hair to locks of love***
Thursday, November 25, 2004 10:47 AM CST
HAPPY THANKSGIVING! Nathan says "Gobble Gobble Gobble" to everyone!
I have been so excited to write today's journal entry. I have more to be thankful for than ever before in my life. I have been so incredibly blessed this year. I am so thankful for the miracle God gave us all and continues to give us as Nathan's health improves daily. I am incredibly thankful for my wonderful family. Without all of you I would be a basket case. My family has supported me through all the good times this year as well as the bad. They have been there to help me with my home, finaces and everyone is more than willing to watch Nathan so I can work, or when I just need some time alone.
Scott has been an amazing father to Nathan and friend to me. I could not have asked for a better father for my son. He is constantly available whenever we need something. Nathan was sick this week with the flu and after working all day he came right over to bring Nathan 7-up and give me a break so I could make food for Nathan's school Thanksgiving feast (which he didn't get to go to cause he was still sick). Scott and all of us have been very lucky that he found a great girlfriend, Jamie. Nathan loves her and she obviously loves him too. She is a brave woman to deal with the two Gezzer men! The best part is she doesn't take any crap from either of them! I love it! Thank you Jamie for loving my son and taking care of his father. Scott's sister and brother-in-law Pam and Scott have done so much for Nathan and for all of us. Pam had been taking Nathan to church on Sundays and he always has a great time going to their garage and hanging out on the motorcycles and putting cars up on the lift. Thank you to Lynda and Bob, Scott's Mom and boyfriend for opening their home to Nathan and Scott and always loving them.
Where do I start in thanking my family? There are so many amazing people who have shown me more love and support than I ever thought possible. My Dad and his wife Donna are always available when I need someone to watch Nathan (he loves to have sleep-overs and play in his toy room) or to help me around the house - Dad has been mowing my lawn again and took care of my leaves and is always willing to fix whatever I break. My Mom and Gazie watch Nathan everyother Friday when I work. They are not afraid to get silly with him and are always teaching him something new. Nathan loves to follow Papa around - we're considering getting a leash to attach them so Nathan doesn't have to look for Gazie. There is nothing better than seeing my Mom's car in front of my house, she always comes with gifts - new socks, pajamas, a new shirt, a picture for my house or anything she thinks I need or want! Tell my Mom you need something and very shortly it will arrive. My sister has to be the greatest gift my parents ever gave me (I got her for my second birthday!) she is the most caring, loving, generous person I've ever known. At times it's really hard to believe that she's the little sister, she's always taking care of me and Nathan. She will take the one day off a week and go to whatever doctor's appointment we might have - even if it means 4 hours in a car with Shrek 2 on the stereo! "It's a fiesta". Her husband is so unselfish and is always willing to share her with us. Never have I heard from him a mean word when there are so many he could say. Joel is definitely my favorite brother-in-law! You never hear him complain when she isn't home with him, even on his birthday when she was at the Cleveland Clinic with us. What can I say about Eric and Wendy and their kids, Peanut, Puppy and Enzo? I could not ask for better people to live down the street from. When I was sick, Wendy went right to the store for medicine and a book for me and brought me homemade Chicken Noodle soup. Kenzie is always willing to come over and spend the night and help entertain Nathan. Trystan and Daniel are such great cousins to Nathan and they love me a lot too! These kids appreciate the little things you do for them - I just wish I could do more for them! They have learned more about life through Nathan's illnesses than any 10, 5 and 4 year old should have to know. They watched their cousin come back to life from the lowest point and they just kept loving him. Thank you all. My brother Eric - always helping my Dad when my yard is more than a one-man job and he is there for me even at 3 a.m. when I need him! Adrian, you are the best date I've ever had for Thanksgiving, I am looking so forward to spending today with you. When I came to the shop, you made me feel so special just with the look on your face when you saw me, you really looked very happy to see me. That meant so much to me. The way you are always willing to open your house to all of our family and extended families for the holidays is so amazing. I know that some of Nathan's best memories are going to be Christmas at Uncle Adie's house. You really know how to bring our family together - the host with the most!
To all of my Aunts and Uncles - Thank you for all you've done for Nathan and I this past year. Where would we be without you? All the hours you spent at the hospital with us entertaining all of us. There are so many things you could have been doing with your time, but as everyone has said, we have the best family and you thought nothing of driving to the Cleveland Clinic and spending your time away from work with us. I am so thankful for my Aunt Liz and Uncle Jimmy, Aunt Jane and Uncle Chris, Uncle Ron and Aunt Vicki, Uncle Brian and Aunt Lisa. Thank you all for your love and time.
To all of the doctors and nurses and therapist who loved my son when he was at his worst, you have a gift that is immeasurable. The care he was given was the world's best.
To Nathan's teachers, Miss Powell, Miss E and Mrs. Ferguson, I know it's not easy to teach him, but you have already made a huge impact on his life and I am very thankful that we know you all!
So, today I get to count all of the blessings in my life and every person who has looked at this website and prayed for Nathan you have showed me how truly good people are. Without your love and support, we could not have made it through the past 8 months. I thank you all.
I hope you all fill your bellies with lots of Turkey, make the men do the dishes and just enjoy your time with your family. If I've learned anything this year, it's life is short and you never know when it could be taken away - cherish every person in your life every minute of every day. I hope that all of you get the chance today to tell the people in your life what you are thankful for!
Happy Thanksgiving!
Love,
Colleen & Nathan
Wednesday, November 10, 2004 10:33 AM CST
Well, we made our trip to Cincinnati yesterday. It took almost 4 hours each way. Thank you to my wonderful sister Sarah for going with us. It is always easier to take care of Nathan and entertain him with an extra set of hands. So, Nathan, Scott, Sarah and I took a road trip and basically we were given a good second opinion. Doctor Cionni told us that Nathan is not a candidate for the O-Rings surgery right now because his left eye is too weak. He suggested that we get him a contact lens (which we had already ordered before he got sick in April and were just waiting for it to come in, then of course with everything that happened that was the least of our priorities), but now we need to figure out if the same lens will work or if we need to order a new one. We still have our appointment with Dr. Traboulsi for his exam under anesthesia on November 29. They will be able to give us an idea of what to do to help both eyes see better. Dr. Cionni also told us that we would need to patch Nathan's right eye to give him a chance to see out of the left and that would strengthen the left. He told us he could be a good candidate for the surgery when he is a teenager, so we have about 10 years to get his eye strong enough for it. He also made us feel good by telling us whoever did his surgery (Dr. Sears at the Cleveland Clinic) did a great job and his eye looks really good. They tried to check his right eye to see how well he sees out of it, but Nathan was not able to see even the largest pictures.
Nathan had his check-up ECCO last week and the tech who did it said she didn't see anything abnormal. Nathan's pediatrician will follow-up with the results. She even gave Nathan two pictures of his heart. So, that was a relief to know that his ticker is still doing well!
Nathan is at home today because the teachers had an in-service day and we get to play all day! He is being even more helpful than before, his favorite drink is Chocolate-Strawberry Milk and he now helps me by getting out the chocolate and strawberry syrup and putting them back again. He loves to help me stir too!
I have a new phone number, if you need to get a hold of me and don't have the new number just send an email to colleenwilson@adelphia.net and I will email you the number or give me your phone number and I will call you.
I signed up for classes at Lorain Community College last week. I tried to take classes last fall, but with all of Nathan's illnesses and surgeries it was impossible, but this year will be different. I'm taking Early Childhood Education Classes (4 of them) and a Pilate’s class! I am really starting to get restless being home alone all day while Nathan is in school. There is always more than enough cleaning to do, but that gets boring. Time to get an education and figure out what I want to be when I grown up!
That is it for now! Have a great week! Please keep praying for Nathan!
Love,
Colleen
Monday, October 25, 2004 11:31 AM CDT
I've finally gotten around to adding new picture to Nathan's photo album. These are from his trip to Apple Hill with his class. This was the first major field trip. We took one to the library last month, but that was so close and they'd all been there before. This was much more exciting. We got to pick apples and Nathan did great. He even helped his partner Japheth fill his bag. He kept picking up the apples off the ground then he'd say "distusting" and throw them away. When we were all eating an apple while waiting for the hay ride to come back, Nathan had one in each hand and was eating both! Nathan's class and teachers are so awesome. They really do help him out so much. Every kid in his class tries to help him get around the class and outside, but he has a really special kid in the group who watches out for Nathan all the time. His name is Japheth. He helps Nathan get to the garbage can when they are finished eating and helps him dump his milk and tray and after the field trip when the class was lined up to walk back into the school, Nathan ran in the grass and someone yelled, "get on the sidewalk" and Mrs. Ferguson his teacher simply said, like she says it every day, "Japheth, help Nathan get back on the sidewalk please". And, without batting an eyelash, Japheth did it. I think that happens a lot at school. I know when they have "center time" when they can paint, go into housekeeping (which is Nathan's favorite), play with blocks, or dinosaurs Japheth helps Nathan get to the center he wants to be in.
We did not take Nathan for his MRI on Thursday. He has had a cold (as you can see from one of the pictures -gross) and I was worried about him being congested and being sedated. We do have the appointment for his exam under anesthesia on November 29 and are hoping they can just do the MRI then and Dr. Traboulsi can just come to the MRI building and check him there. A friend of mine whose son goes to the Children's Developmental Center for rehab gave me the name of an ophthalmologist in Sandusky that she takes her son to because she had previously gone to Dr. Traboulsi and wasn't too pleased with him. She is going to give me the number for this guy on Wednesday so maybe we can get the exam done earlier. Her son only has limited verbal skills and they simply dilate his eye to check for glasses (which he wears) and don't have to do the exam under anesthesia so hopefully that is what they can do for Nathan.
Oh my goodness, with all the talk about his field trip and the very sweet note from his teacher in the guest book, I almost forgot the most important news. Nathan can see colors now! Isn't that great? He does great when you hold up a few colors and ask him which is green or red. But, he can pick out anything that is pink. Tell him to find the pink balloon and he will go anywhere to find it. I took him to Wal-Mart on Wednesday and we went to the toy section and he walked up to a Barbie display and said "Mom, look at all that pink stuff". You have to understand, before April, Nathan only knew pink and purple. As hard as we tried we could not get him to learn his colors. I thought he was color blind, but he can match colors (if you show him a green item and ask him to find more green he can do it) but he could not tell you what color something is. He could only tell you pink and purple. So, we've been working all weekend (well, Scott and Jamie worked this weekend with him) and will continue to get him to learn those colors. We are very excited. We went to my Mom's Wednesday evening and were asking him to pick out between a blue cup and a yellow one which was which and he did great, then my Mom held up a tomato and a green pepper and asked him which was the tomato and he picked it right out (then tried to eat it like an apple). Then we asked him which one was green and he said the pepper.
I'm sure you can tell how thrilled we are by this and all his progress. Not bad for a kid they said wouldn't walk or talk to do anything again. Yeah Nathan! You just keep proving those doctors wrong. I could not be prouder of my little boy. He has made such incredible strides in the past 6 months. But, I do know that it's not just his hard work that has given us these results, we know it has a lot to do with all of your prayers and we really do thank God for listening and knowing what an amazing person Nathan is and that the world is truly a better place with him in it! So, once again I would like to thank you all for your prayers and support. Please continue to remember Nathan because we are not done yet! He is going to have a lifetime of struggle because of his injuries. His attitude does make it a little easier - cause he's just so sweet (think he gets that from me - ha).
Have a great Monday and rest of the week. I'll update again if anything new happens!
Love,
Colleen
Friday, October 15, 2004 9:10 AM CDT
Another week of school is almost finished. Nathan is still doing great. Wednesday we got to go in the Hummer Limo to Home Town Buffet for lunch. We had a great time. There were 22 kids and 4 adults in the limo and they had the music sooo loud it sounded like a night club. Nathan was dancing and having a great time. He was happy to tell everyone at school that he got to eat ice cream and they didn't! He can be such a little teaser sometimes. Thanks to everyone who bought stuff from his fundraiser and to Aunt Sarah for taking it to work and threatening everyone to get them to buy. The items should be in on October 20 according to the school.
Nathan's MRI is scheduled for October 21 at 1:30. We have not had any luck getting them to do the exam under anesthesia for his eyes at the same time, but we are still working on it. That has been scheduled for November 29. His pediatrician has suggested (as did my Aunt Liz - thanks) that he have a check-up ECCO for his heart. Someone asked why did we need this because the cardiologist at the clinic wrote him off as if he's never had a heart problem, but we just want to be on the safe side. So, we scheduled that for October 28. He also has his appointment in Cincinnati on November 9 for the new eye doctor. He is going to have a busy few weeks.
Well, I think that's about it. Nathan is having a sleep-over at my Mom's tonight while I work as always he is really looking forward to it. When he sleeps over there he gets to sleep in her bed with her so now he asks me almost every night "If I don't have a bed at your house then can I sleep with you?" Luckily he does have a bed here cause he moves around a lot and always wants to sleep on my side of the bed, or he ends up sideways with his feet right in my ribs. But, it's always nice to get a chance to snuggle with him. My Mom has been teaching him nursery rhymes every time he sleeps over so we'll have to see what new ones he comes home with today. Mom, if you're reading - don't forget about Old Mother Hubbard, don't think he knows that one yet!
Have a great weekend! Thank you for your continued prayers. His vision does continue to get better all the time. I just wish I could get into his little head and see what he can see. He plays it off like he can see everything!
Love,
Colleen
Tuesday, October 5, 2004 8:09 PM CDT
Today is another family member's birthday, I think all of the other birthdays I've told you about have been blood family members. This is a person who loves us, not because she has to, but because she wants to. And, Nathan and I love her because she has shown us what an awesome person she is. My sister-in-law Wendy is 30 today (finally, I'm sick of being older than her). She loves Nathan like he is one of her own, she treats me like I am her sister. Wendy, I truly appreciate all you have done for us. You are always there when I need someone to watch Nathan or pick him up from school or when I need someone to listen to my problems. Thank you. You have also given our family three very special little people. Daniel, Trystan and Makenzie; you have done a great job raising these little people. They are loving, generous and very very sweet. They treat Nathan like a brother and that is because of their parents. I thank you over and over again for all that you have brought to our family, you are such an asset that we would be less without! I love you and you know how much Nathan loves you! Hope you had a great birthday, we are going to have to go out this weekend and formally celebrate being 30!
I got the phone number of an eye surgeon in Cincinnati who helped a friend of Sarah's to regain vision in an eye he had lost sight due to an injury. The surgeon fixed his pupil so it is round again and of course the best part is that he can see. We have an appointment with Dr. Cionni in November for a consultation with Nathan. Keep your fingers crossed and prayers ready that they can help Nathan's left eye. We also heard back from the Cleveland Clinic and the MRI scheduler told the scheduler for Dr. Traboulsi's office that she would not schedule the MRI and exam under anesthesia together. Guess I've got to call the doctors directly again. They want to wait to do the exam until the end of November (29th) or December 6 which I think is ridiculous - that is two months away. They have done this before and we have worked it out where we got faster service. We will do what we can to get this to work again. I'll let you know when I found out anything.
When Sarah and I went to pick Nathan up from school today, the head of the PTO was there and told me that Nathan won a trip to Hometown Buffet in a Hummer Limo for selling over 20 items in their fund raiser. The best part is that I get to go with him! Daniel told me that the school announced the names of all the kids that won the trip and he heard Nathan's name! Yeah Nathan! Or, I should say Yeah Aunt Sarah - she sold a ton for him at work!
I think that's all that is happening right now! Thanks for reading and for all of your prayers!
Love,
Colleen & Nathan
Wednesday, September 29, 2004 10:36 PM CDT
Today is my Dad's birthday. I won't tell you how old he is, cause I think he had enough of that today! My Dad is an amazing person. He loves all of us kids so much and is completely in love with his each of his grandkids. Since my first divorce from Scott (Nathan's Dad) he has been taking care of me, mowing my law, doing home improvements and he and Donna are always willing to watch Nathan whenever we need them to. He is emotional and never afraid to cry when the moment moves him. After Nathan's first birthday party (which we had at his house), Nathan and Makenzie were asleep in a crib at their house together and I went up there to check on them, and found my Dad standing over their crib crying because they looked so sweet. He retired from Ford after working there forever and he may think that he missed a lot of our lives because he was working, but I remember my Dad being there - he was there when I played softball, soccer, basketball, was a cheerleader and for all the things in between. He can now enjoy his time and I know that he wants nothing more than to spend more time with all of his kids. I am so proud to have him as my father. We did not grow up rich, nor do we have any thoughts that we will inherit a ton of money, but I would never trade my father for anyone else in the world. He has always been a great provider for his family, he has taught us to support our selves and have pride in who we are but, he is always ready to give his love to us freely. I don't know of any other man (except Nathan) that I have or will ever love me more. I know I have made mistakes that disappoint him, but he will always support my decisions and help me to make better ones. Dad, thank you for everything you have done for me and for Nathan. I could not have made it through 2 bad marriages or been able to raise my son the way I have without your help and support. I love you so much, I hope you know how important you are to our lives. I hope you had a great birthday and I wish you many many many many more. I love you!
I love having this forum to express my feelings and to give praise to all of the wonderful people in my life. I feel so lucky to have such an amazing family who has taught me to be strong and loving at the same time. I thank God for all He has giving to me!
Yesterday we took Nathan to his Neurologist, Dr. Rothner at the Cleveland Clinic. You could just see how proud he was of Nathan. You could tell he was pleasantly surprised at his progress. We are scheduling an MRI to check his progress in his brain as well as an exam under anesthesia for his eyes. After the MRI, the ophthalmologist will come down and do the exam there so Nathan doesn't have to be sedated twice. I am very grateful that the clinic doctors are willing to do things like that. Dr. Rothner said, if they tell you they can't do that, you call me! I like it! I will be sure to let you all know when we know something.
Well, I am very happy to report that my last name is now Wilson again. My divorce was final yesterday. I made a huge mistake getting married so quickly, I thought I knew my husband, but had no idea what was so carefully hidden. That is all I have to say about that subject - for now. Check for a new email address and I will soon have a new phone number for anyone who has the old one, I will get it to you when it happens.
Nathan is doing awesome in school. He had his first field trip today and got to go on his first ride on a school bus. He loved it! We went to the library and he was very good. My Mom and Sarah have said they really see a difference in him since he's started school, he has calmed down a lot and I think his attention span is increasing. He tells me things that happen at school and sings the songs to me - they are working on shapes and colors and he's getting very good at telling which shape he's holding. We are still waiting on his aid, he had an interview with the school psychologist. The next step is an observation with the school vision specialist.
I hope everyone has a great week. Please continue to pray for Nathan's eye sight. It is coming back, but he needs more help! Thank you for all of your help and support!
Love,
Colleen
Friday, September 10, 2004 10:21 AM CDT
It's really nice to see that there are still so many people who are interested in Nathan. Thank you all for your thoughts and prayers and words of encouragement. I'm sure you all know that through this whole ordeal, this website has been my therapy. It is really nice to have a place to go where you can just pour out your thoughts, feelings and a great place to brag about my little miracle. Sharon and Lisa you are so right, I have the most amazing family in the world. I have never seen so much love and concern and everyone is so willing to help us out whenever we need it. I cannot remember the last time someone told me "no" when I asked for a favor!
Nathan has begun his second Friday in school today. He tells me in the morning that he doesn't want to go, but by the time we are downstairs having breakfast he is running for the door. He always tells me he is going outside because he has his shoes on. Serves me right for telling him so many times that he cannot go out because he doesn't have his shoes on. I know I don't have to tell you all, but here is another example of how sweet my boy is. When I'm ready to go to bed I've started getting Nathan out of his bed and taking him to the bathroom (Scott tells me it works for him, so I had to try it). I pick him up and carry him there and Wednesday when I set him down before the toilet he turns to me and says in his sweet, half asleep voice "Thank you". How cute is that? He's thanking me for waking him up and making him go to the bathroom! He talks about the kids at school as his "people". He remembers his teacher's names and now knows what school he goes to. I know these things seem like little things and every pre-schooler should know them, but Nathan is different and every little thing makes us all proud. I went to the school on Tuesday to talk to Nathan's class about why he can't see. I sat in front of 19 3 and 4 year olds and started to tell him how Nathan had a boo-boo on his brain and how hard he worked to make it all better, but the part that helps him see is taking more time to heal, about 3 seconds into talking to them, I started to cry. I cannot believe how hard it is to talk about how sick he was, while I was living it I don't think I cried this much. It's almost that the relief of knowing he's better is more overwhelming than the illness was.
I know a lot of people are wondering about Nathan's vision. He sees very well now. He still doesn't see details, but he notices people in the store and tells me if they are a boy or a girl, a man or a woman. He likes to see the cars and trucks on the road when we are in the car again. I remember when his was about 18 months old and he used to point out every vehicle on the road - tar, big tuck or stool bus, or mimi ban, and of course SUB. Now he's doing those things again. When we went to my Dad's recently he told me we were almost at Papa's house. He was right, we were just one street away. We are waiting for the eye doctors to schedule an exam under anesthesia to see if he needs glasses to help him with the details, they cannot get him to accurately read an eye chart (or even the picture ones), but they can figure out what prescription he would need by looking at his lens. We are also ready to talk to them about the contact lens for his left eye that was ordered before he got sick, to see if that will help. If it is still the connection between his brain and his eyes that is keeping him from seeing they will know that after the exam and since we already know it has been improving we will have to continue with the wait and see approach. He has an appointment with his Neurologist on Sept. 28, we think he's going to schedule another MRI to check up on his brain. My biggest hope is that we can coordinate these two tests to have his MRI and eye exam on the same day so he is only knocked out once. We have had luck doing things like this when we are at the clinic. They have helped us out in the past. So that's his medical update for the week! I'll keep you all posted when I know more.
Well, I better finish my house work, I've got no excuse anymore - I've got more time to myself here than I ever thought I would. I'm still catching up on the laundry - it's amazing how much just the two of us wear.
Have a great weekend! I'll update again when something happens!
Love and many thanks,
Colleen & Nathan
Thursday, September 2, 2004 5:09 PM CDT
Wow, it's been a while since I've updated this, huh? Anyone still out there reading it? If so, sorry I've been absent. Life has been crazy. I see my sister needed to post the fact that I had another birthday, that brings me to 30. I've needed the past few weeks to accept that fact. Why is it that only the birthdays that end in 0 make us so crazy? Between my birthday, Sarah's birthday, Daniel's and my wonderful brother-in-law Joel's birthday (the day after mine and Daniel's) my Mother just had her birthday on Monday. I have to tell you all (or both whichever the case may be) that I no doubt have the greatest Mother in the world. She is never short of advise that I usually don't listen to then wish I had. She knows that by telling it to me it could cause a fight, but she tells me anyway because she loves me enough to let me be mad at her. And, I am extremely grateful that she does. She is so willing to help me and all of us whenever we need it. My Mom has a way of seeing both sides of our problems, even when it would just be easier to bitch and complain along with us, she will give us what might be the other person's point of view. She definitely has a gift for making us think. She is so loving to all of us kids, her sisters and brothers, and all 4 grandkids. She is more than willing to get on the floor and play with the kids and get them to use their imagination rather than bringing out a million toys. Nathan has benefited greatly from playing the "hand game" (you know, where you stack your hands up then pull out the bottom one and place it on top). He gets a chance to use both hands and it keeps him occupied in a restaurant or anywhere. If you need curtains or new sheets or anything for your house or wardrobe she is the one to find it. If you need something to match something you already have, just show her the color once and out she goes and you are guaranteed a perfect match. She is a "domestic Goddess". Mom, thank you so much for always being "there" (I know, where?) for us. I hope you know how much I love and admire you. If not, then I have some work to do cause it is a tremendous amount. Thank you for teaching me that emotions and feelings change and relationships are based on more than that. Maybe next time I will get it right! Nathan and I know how lucky we are to have you - we've seen what other people have and you are the most amazing mother, Nana and friend we could ask for. I hope you had a great birthday.
I have spend so many days on the phone trying to keep my internet connection working, but today it might have been the trick. Anyway, other than birthdays this month, Nathan started pre-school on Monday. I was a mess. Sarah and my Mom and Scott and I took him to school. It took about 1/2 an hour on Monday before we could leave, he cried a little when we did then got up and played with everyone else. I cried a lot longer than he did. He did better on Wednesday and tomorrow Aunt Wendy is going to take him, cause I have to go to court in the morning. He goes Monday thru Friday 9:30-2:45. I miss him so much when he's gone. This week half the class went on Monday and Wednesday, the other half went on Tuesday and Thursday and they all go tomorrow. They are off next Monday and start a full week after that. There are 20 kids in his class with a teacher and 2 assistants. Nathan really seems to enjoy being there. We are still waiting for Makenzie to get into his class - she's still on the waiting list. Hopefully she gets in soon. I know how much she wants to go. I'll get pictures up, hopefully today - he was so cute. This was such a huge thing for him to make it to pre-school on the first day like he was never sick. We are so proud of him. We are still waiting for him to get his evaluation to see if he needs an aid with him. It should happen next week and I'm sure he'll be approved. Even though he is seeing better, he still has the danger of falling and bumping his head.
Well, I guess that's all for now, hope everyone has a great weekend. Thanks for reading!
Love,
Colleen & Nathan
Tuesday, August 10, 2004 9:10 PM CDT
Well, we went back to the Clinic for our appointment with the Neuro Ophthalmologist yesterday. It went well. The doctor said what we already know that Nathan's vision is improving he put his hand up and in different positions and Nathan looked right at him every time. It was great news. The next step is to find out if Nathan needs glasses to improve his vision. Dr. Traboulsi at the clinic will probably put him under anesthesia to see if he lens is refracted and he can determine the prescription needed from looking at his eyes while he's sedated. If the need for glasses is not there or if it is only small - we know that the lack of sight is due to the brain damage and we will just have to wait and see how much he ends up getting back. Please continue to pray for him.
After the appointment we went back to the Rehab hospital to donate Nathan's wheel chair and to see everyone there. It was great to show off Nathan's progress. Everyone was very pleased. We saw all of his therapists, Mandy, Erin and Lisa and his primary nurse Dorothy and other nurses Molly and Linda. It was great to see everyone and know we still got to go home and sleep in our own beds! Keep in touch everyone!
Nathan went for his 6 month check up with Dr. Patel his pediatrician and she was just thrilled to see how well he is doing (as we all are). She hasn't seen him since Easter when she came and saw him at the hospital, but has been keeping up on his progress from other doctors and a friend who works at the Rehab hospital. It is amazing to sit and think about where he's come from and what a miracle he is. I am so proud of my little boy. I'm not sure I could be more proud of him if he wins a noble prize in his life.
Tomorrow is my sister's birthday. She is the most amazing sister anyone could ever have. Sarah, I am so lucky to have you for my sister. You have stood beside me and supported me through so many mistakes and of course through all of the great times. You are the greatest aunt any kid could ever want, your love for him could not be greater if you were his mother and I know if anything ever happened to me you would be the only replacement possible. I love you sis and wish the greatest for you and Joel for the next year of your life which starts tomorrow. If anyone is looking for a place to use some of their prayers, my sister would love to have a baby of her own, but when Nathan got sick last July she told God that until Nathan was better she didn't need a baby yet. She has truly given all of herself (and a lot of her husband too) for Nathan and I through all of his illnesses. Please pray for God to Bless my sister with a baby. That is my birthday wish for you sweet sister. Have a fabulous birthday! See you at breakfast!
To everyone else, have a wonderful week. Please continue to pray for all of the kids who need your help, you are such a force that I know God is listening to you!
Love,
Colleen
Friday, August 6, 2004 10:05 AM CDT
Sorry to not have updated at all this week. We are having a great week. Life has been keeping us busy. Therapy is going great, Nathan loves to go. He loves playing with Kendra, Nicole and Carol. He has been running a lot lately. He really likes to be chased around. I started yelling "Run Forest Run" and now when he's running around the yard he yells it too! It's very cute. Then again, almost everything he does is cute. I can do without the hitting and the stepping on my feet, but he's learning.
We are still trying to figure out what we are doing about Preschool. I am conflicted about whether he should go to school at a special needs school (he is still a very normal 4 year old, we just have attention span problems and of course his vision) or if we should send him to the school he was already accepted at that Makenzie is going to, Trystan and Daniel will be in the same building too. It's closer to home and they would be required to give him an aid to help with the vision issues. I think it will be easier for him to deal with not having me around if Makenzie is there. I just don't want him to be left behind if it's too hard for him, but I really don't think it will be, he has always been very smart for his age. He spent time with a kid a year older than him and Nathan's speech and learning ability were way better than the other boy's. At 3 years old, Nathan already knew how to spell his name, his phone number, what street he lives on as well as the roads my Mom and Dad both live on. He can count to 20 and knows his ABC's (he learned those at 2). Our biggest issue was always colors - he even know his shapes when he could see. He cracks me up he sings all the commercials (and we really don't have the TV on that much) and he listens to read-along books on tape and knows the Finding Nemo one almost by heart. They told us he would have a harder time learning new things, but he's learned new songs and stories and even Scott's new phone number since he came home. Now that I have bragged and bragged about my little boy it's time to finish cleaning the house (not easy to do with someone always under foot, but we try).
Hope everyone has a great weekend! Nathan is having a sleep-over at my Dad's tomorrow while I work at the Eagles. Good luck Dad and Donna. I'll go there after work to sleep with him.
Please keep praying for Nathan and for the return of his sight.
Love,
Colleen & Nathan
Thursday, July 29, 2004 8:42 PM CDT
What can I say, we have had another great week. Nathan spent the day with his Dad then I picked him up to take him to therapy. He only had OT today, but we made it last an hour! He just didn't want to leave. But, we had important dinner plans at Papa and Nana Wilson's house. We finally got to leave, and got to dinner. We had a nice dinner, Nana and Papa took Nathan for a walk around the two cul-de-sac’s that they live on and then he got to play in the Jacuzzi again. He really likes being in the water when he's in control and can touch the bottom. I got him a pool for his birthday that has a slide, ring toss, basketball hoop and palm tree with a hole and net in it for throwing balls in. If it would get warm enough to get into it I'm sure he'll love it.
Yesterday we went to my Mom's house before Jamie (his Dad's girlfriend) came to pick him up and he was running around the yard kicking a ball and following it then kicking it again. I know his vision is coming back slowly, but it seems every time we go to someone's house they can tell that he's seeing better and better. I am amazed at everything he does. I also know that your prayers are working and God sees how much Nathan deserves to get his sight back. It's like new miracles every time he sees something. We have the appointment with the Neuro Ophthalmologist on Aug. 9. I can't wait to hear what he has to say. I'm really looking for some ideas of what we can do to help his vision. I really want to know if any kind of glasses will help him or anything that we haven't heard of that we can be doing.
Well, it's after 10 and he is still playing on the bed, I've got to go lay down the law and get his little butt to sleep! The best way is to pretend to be sleeping, then he figures it is his turn - the only problem is I'm not sure if I'm really pretending after a few minutes!
Have a great night and wonderful weekend. I'm not sure if I'll update again it's Scott's weekend starting tomorrow night and I won't have much to say! So, unless I make it hear again, have a great weekend!
Don't forget Nathan in your prayers, he prays for all of you!
Love,
Colleen
Sunday, July 25, 2004 6:42 PM CDT
Well, it's Sunday evening and Nathan just got out of the bathtub and is now watching Finding Nemo (well listening to).
We had a great time at his party yesterday. Thank you so much to everyone who came and helped out. To all who missed the party, you missed some great food, (thanks to all who made a dish - it really helped us keep costs relatively low) lovely conversation, and great company. I wish I could have a party like this every weekend (without the work of course) I just love getting to see all of our families and spending time with everyone. Nathan got ornery while opening his gifts and started to cry. Scott took him aside to talk to him and Nathan hit Scott, so he was put in time out. The fun part of this is that Nathan would not come out of timeout after that. He spent about 1/2 hour sitting on the side of my Mom's garage. We tried everything to get him out, bribes, playing with his toys, leaving him alone (being out of his low viewing range) nothing worked. So I just decided to take him out and try to see if he would be nice. He did and finished opening his gifts. He also was lucky enough to have Nana Rigo and Aunt Sarah feeding him while he opened gifts so he got happier by the moment. He did great he rest of the evening. We all had a great time! Nathan and I got to sleep with Nana Rigo in her bed and snuggle all night, then Nana and Nathan woke up (way to early) and let me sleep in! That was really nice. Then we did some cleaning up around my Mom's house and Scott came and picked him up for their Sunday together.
Once again both of our families came together to help Nathan and Scott and I out. Everyone cooked and brought drinks and everything we needed for the party. It was great to celebrate a birthday we didn't even think would happen. Thank you Dad, Mom and Gazie, Sarah and Joel, Adrian, Eric and Wendy, Nichole and Matt, Jamie, Pam and Scott you are all great and we love you so much! Thanks again!
Tomorrow should be a fun day, we are going to relax and recoup after the party! And play with some really cool new toys! I have to really hand it to our families and friends, you really put on your thinking caps to get Nathan great gifts that he will really be able to use to help him regain his sight, work his lazy left side, stimulate his creativity and bring out his love of music! Thank you all!
Have a great week and please continue to pray for our little miracle boy!
Love,
Colleen & Nathan
Tuesday, July 20, 2004 9:58 PM CDT
Wow, Nathan's birthday was awesome. It started while we were opening presents and Aunt Wendy and all the kids came over. Nathan had a great time playing. Then Papa Wilson came with more great presents. We went to therapy and played with Carol (OT) and Kendra (PT). Nathan is doing great going up the stairs Kendra says he probably doesn't need to work on that anymore. He even got on the ball voluntarily (I know Erin and Mandy from the Children's hospital are shocked to hear this - he never wanted to get on the ball there). Then we got to walk over a shaky bridge outside and go down the slide. He didn't want to leave. But, I was able to convince him that we'd have fun at his lunch at Applebee’s with Aunt Sarah, Uncle Adie, Aunt Wendy and all the kids and Papa Wilson. We had a great lunch and he got more Ninja Turtle stuff and puzzles and new clothes. When we got home Scott was on his way over to pick him up for his birthday dinner at Dave and Busters. He had a great time there too and played the games then got to pick out tons of stuff with all of the tickets they won. He came home a very happy little boy. He had a great birthday.
Thank you all for your birthday wishes. A friend of ours is creating a scrapbook from his website and I know when he's older and can read all of the well wishes he'll really appreciate how much he is loved.
Hope your days are as great as ours are. Tomorrow is more therapy and then he spends the night with his Dad.
Keep praying for our boy - his sight is really improving. We know they are still working!
Love,
Colleen & Nathan
Monday, July 19, 2004 1:26 PM CDT
We are at Aunt Sarah's house for the first time since before Nathan got sick. He is doing great here, he is easily moving from room to room giving Aunt Sarah stickers.
We did some shopping today for Nathan's birthday. The party is going to be on Saturday and we would love to see you all. It's at my Mom's house at 5 p.m.
Tomorrow is his birthday and when I think of where I was 4 years ago today it makes me cry. I didn't even know yet if my baby was a boy or girl and I had already been through almost 24 hours of labor. He was born at 1 a.m. on July 20. Nathan was a 9lb 8oz big boy! He didn't even have a name until the day after he was born (of course we had a girl's name picked out already). Sarah and my Mom and Scott were there the entire time even spending the night together, July 18, (all 3 of them) on a pull-out couch in the Hospital. Sarah got tired about 8 p.m. on July 19 and went home cause nothing was happening my Mom left for a while during the day and went to our house and completely rearranged everything making our living room look amazing for when we brought our baby home. Everyone else (friends Marc and Shellie and Aunt Pam) all left about 11 p.m. The nurse checked me a few minutes later and told us I was finally 8 centimeters dialated. So, we called everyone back - but we couldn't get ahold of Sarah (she was already sleeping - we didn't talk to her until 7 a.m. the next moring when sleeping beauty finally woke). After 32 hours of labor 45 minutes of pushing our little miracle was born. Scott and I were easily the happiest people alive. It wasn't until he was about 1 year old that I realized I actually had a boy. He has always been the sweetest baby ever. He loves so fully. He makes friends easily and is still extremely smart. I feel like the luckiest person in the world to be celebrating his 4th birthday with him tomorrow.
Everynight Nathan and I say prayers and ask God to bless all of the wonderful people who have been praying for him for all of these months. We will forever be in your debt as Nathan continues to thrive and get better each day. Thank you all for helping give me my baby back!
Have a great week and please keep Nathan in your prayers.
Love,
Colleen
Sunday, July 11, 2004 4:59 PM CDT
I know you are never going to believe this....two updates in two days. WHAT??!!?? Scott gets Nathan on Sundays and I was just finishing up laundry so I decided to check in again. Ronda and Sarah you are both right, this website is still a release for me, it just sometime feels like a burden when I really want to get here, but can't think cause my little bambino is constantly talking to me! As much as I love to hear his sweet voice it's impossible to read or write when he's around.
We went to a graduation party yesterday at Aunt Wendy's (and Uncle E-Bone's) house, her cousin Amy graduated from College - Congrats Amy! Anyway, it was nice to get away while the adults took turns playing with Nathan, I also had a chance to talk to my Dad and brother for a while. But then the night ended for us when everyone (the adults) were trying to play a game and I couldn't play because Nathan wanted to be a normal kid and go play ball with all the others, it was late and dark and I was tired anyway so we went home. That makes me really sad when we go to parties (I know you were wondering what was wrong yesterday, Dad). I want so much for him to be able to go swimming with Makenzie and Trystan (now that he really wants to) or to play on the swing set or just run around with everyone else. It's like having a baby again who just learned how to walk, but my baby already knew how to walk and remembers how much fun he used to have and wants to do it again. I feel so sad for him, I try to lie and not tell him everything the other kids are doing, except that his ears are really good and he hears them in the pool or hears one of them talk about the swing set. Just another thing that makes me feel sad for him.
We had a great morning, my Mom found some cds of kids stories and he loves "watching" them. It's cute cause he will just sit in his playroom and listen to the cds. Today we listened to Cinderella and Little Red Riding Hood - Thanks Mom, he really likes them. I used to tell him the story of Little Red Riding Hood and the Three Little Pigs all the time cause he loves the big bad wolf in the stories, now he can hear them over and over!
Hope everyone has a great week at work.
Love and God Bless you all,
Colleen
Saturday, July 10, 2004 1:12 PM CDT
Scott came to pick Nathan up for a few hours today, I was trying to get some things done around the house when I noticed this desk in the corner of my bedroom and remembered that I have a computer and oh, no Nathan's website! Sorry to have been neglecting this so much. I have a really hard time putting two thoughts together, much less making it up the stairs, turning this thing on and sitting down to type.
On to the info you came here to see...Nathan is doing great. He goes to therapy Tuesday, Wednesday and Thursday for an hour and he really likes it. The 1/2 hour sessions are great cause neither of us has a chance to get bored. It is also nice cause we get into Amherst and either visit someone or get some running around done after. Nathan is able to follow us around by seeing our shape. He doesn't usually know who is who, but if you walk backwards in front of him he can follow you anywhere (even in circles - yeah, I'm entertaining myself by messing with a blind kid - bad Mom). He also does very well getting around the house and rarely bumps into objects unless they are small - he doesn't look down, just straight ahead. Nathan has a great sense of humor, he laughs a lot and keeps me laughing. Nathan also talks just about constantly - not just babbling, but trying to have conversations with me allllll day long and even when it's time to be sleeping. Do you remember how much I wanted to hear his little voice? Well, he's already made up for not speaking for 6 weeks.
We are planning Nathan's birthday party. His birthday is on July 20, but that's a Tuesday so we are planning it for the 24th. He is really looking forward to it! He can't wait to be 4!
Thank you all for continuing to think about and pray for Nathan. We truly appreciate each of you.
Don't know when I'll make it here again, hopefully soon!
Have a great weekend
Love,
Colleen
Wednesday, June 30, 2004 10:22 AM CDT
Nathan is helping me write this entry today. He is happy that so many people love him and pray for him. He is always happy to say prayers for everyone else too. When I was reading guest book entries to him he turned and gave me a hug and kiss cause that is what the entry said. He's so sweet.
His first day of therapy in Amherst went really well. He had a great time playing in a bucket of birdseed and finding objects in it. He walked up stairs to a slide and slid down fast with a carpet to help his feet stay out of the way. He had a great time in a net swing - he stayed in it a lot longer than every before. He felt the same about the ball he only spent a few seconds on it before he wanted off. He is excited today because he gets to meet a new therapist named Nicole, like his cousin - he keeps saying a new Nicole. She is his speech therapist. Therapies are from 1:30-2:30 on Tuesday and 2-3 on Wednesday and 3:30-4:30 on Thursday. I won't go on Thursday to give Scott and Nathan some time together to enjoy his therapy (and to get some time alone for myself).
There was a song posted on the Cruise Addicts Message board for a boy named Elliot who has cancer and it fits perfectly for Nathan -it's copied below - it made me cry so hard. I wish my printers worked I need to print this out and frame it so I never forget the struggles this little boy went through. I hope you all enjoy it as much as I did.
Hope everyone has a great day!
I'll update again soon.
Love,
Colleen & Nathan
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs your help
I've done all that I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can you hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Can you hear me?
Can you see him?
Please don't leave him
He's my son.
Sunday, June 27, 2004 10:01 PM CDT
I am so sorry to have been so far away from everyone this past week. I had my Dad and Step-Mom put up the last update. I am tired a lot of the time. I just keep hoping that I can effectively help Nathan even when I am a little tired. He is such a good hearted caring sweet boy that I would hate to hurt his feelings or make him cry ever.
I tried to have a garage sale this weekend, it didn't even get out of the garage on Friday because of rain, and Saturday we only had about 10 people buy stuff. My Mom was extremely productive, she is so amazing, she cleaned out my back room that had been infested with mice before Nathan got sick and I couldn't get into that room because I had this huge fear of running into a mouse. It's amazing how your fear can paralyze you. My terrific Mom got right in there and made the most amazing improvement I've ever seen in my life. I cannot thank you enough, you prove to me over and over how lucky I am to have you for a Mom.
My family continues to amaze me with their support. My Dad and Donna were here on Thursday to help me with the sale, then my Dad was here on Friday at 8 a.m. to help me get the sale into the yard and stayed until almost 11 before we gave up. Then he and Donna took care of Nathan (first time I've left him with someone) while I went to a meeting. My sister was here on Saturday all day, then she even left me her husband Joel to help me clean stuff up. Thank you both Sarah and Joel you are such amazing people I am so lucky to have you both. My cousin Nichole and her husband Matt were here on Saturday and Nichole took complete care of Nathan including getting him to take a nap while Matt carried all of the heavy stuff, kept us laughing and tried to drum up business. Thank you guys. I love you both so much. It makes me feel great that you wanted to spend some of your time home with us you were such a huge help!
Ronda, your guest book entries continue to help me out. I needed a new perspective on how to treat Nathan and I do give him tons of loving, but I'm not afraid to carefully "roughhouse" with him, if always feels good to have someone validate something I'm doing. Today we went out into the yard so he could "run". He held onto me and I ran backwards until I stepped on a bee and couldn't run anymore. He was so sweet wanting to kiss my boo boo over and over again. When I didn't want to get up and run more, he said "but I kissed it, doesn't it feel all better?" At that point I didn't feel any pain.
Nathan had a great day today. He got to go with his Dad and Jamie and Aunt Pam and Uncle Scott to the Indian's game (they even won). It was Dad's company picnic and the kids got to run the bases afterwards. Nathan loved it. When he talked to Scott tonight before bed he said "Remember Dad that I ran the bases with you today". He also things he got his picture taken with Slider, but Slider just touched him on the head. He was even on the JumboTron while on the field!
Hope everyone had a great weekend. Please know that when I don't update it's either from exhaustion and I fell asleep with Nathan or the computer won't work.
Please keep praying for Nathan and for his eyesight. A family friend (Carrie) told us about giving Nathan Fish Oil for his eyes and brain. We started it last week so hopefully faith and a little organic medicine will do the trick. I truly believe that his sight will come back, his right eye was previously lazy to the point that it never left the corner of his eye. Now, however, he appears to be look around a lot and might even be following things with his eyes, unless I’m just noisier that I think and he just hears them. His hearing is so amazing right now, except when he’s being funny and says “Huh, what?” over and over again. He has such a sense of humor.
Have a great week and I really hope to update soon.
Love,
Colleen
Thursday, June 24, 2004 8:21 PM CDT
Nathan went to the doctor today and he had a MRI. The result showed since his last MRI in April, his brain has shrunk. He has fluid between his brain and his skull. The part of the brain that connects the two sides of the brain is thin. His ventricle are larger than normal. They said this maybe a result of a lack of oxygen when he had the stroke. The doctor is going to check to see if his brain has shrunk since the MRI in August of last year. His advice is to continue to love him (DA!) and send him to pre-school when it's time.
We will have to watch Nathan even more because this problem causes him to be more vulnurable to more bleeds in his brain. If he bumps his head again it could likely cause him to bleed again, thus starting everything over again.
We are still going for our neurology second opinion on July 1st. We are taking all of his MRI scans with us to give them a complete picture of his history. Dr. Rothner at the Cleveland Clinic is going to review the MRI's again to see if they have missed anything. He also said the MRI does not match what he sees when he looks at Nathan.
Nathan begins therapy again next Tuesday at the Amherst Developmental Center. We will go for an hour on Tuesday, Wednesday and Thursday. It will be a nice break each day and it's nice and close to home. This will also give Scott a chance to go on Thursday's.
We started giving Nathan Omega 3 a Fish Oil a friend who gives it to her daughter told us about it, a creamsicle tasting paste which he likes and hopefully it will help his brain - It can't hurt him.
Sorry I haven't been able to update regularly. My modem is on the fritz and I haven't found time to work on the problem.
Thanks again for praying for Nathan. I'll update again when I get things fixed or if there is any change.
Love,
Colleen
Friday, June 18, 2004 11:12 AM CDT
I had some modem issues last night and couldn't get on the computer which is why there was no update.
We had a great day. Nathan stayed at Scott's house for the first time Wednesday night. They had a good time. We had an appointment with Nathan's Retinal specialist. All good news, his optic nerves are not swollen at all anymore. His retina's are both attached. From his viewpoint, and specialty there is no reason for Nathan not to have vision. We are going to a new doctor an optical neurologist on August 9th. They will do what they can to figure out if he will regain his vision. We will continue to be optimistic about the whole issue. We will also continue to need all of your prayers to help him see again. Today when we were in the kitchen, Nathan was about to bump into a kitchen chair and just before he put his hand out and felt it, and then he turned the other way and almost bumped into the fridge and put his arm out to touch that too. I'm not sure if he saw them or just sensed they were there, but it makes me feel a little better.
Two of Nathan's therapists from the Rehab came over yesterday. Mandy and Erin came to drop off some of his things that we left there last week and they had to pick up the helmet they loaned us (they also dropped off the one they ordered from him - it's purple) and the books and movies we got from the book mobile. It was really nice of them to come visit, Nathan got to show them his new playroom and his bedroom, they also played with him and did a little of what we did during his sessions. Thanks for coming - it was really nice.
My family and friends continue to be so much help to Nathan and me. My nephew Daniel (9) is coming over each day around 10 a.m. to play with Nathan while I take a shower (they live right down the street); he has been given the responsibility of making sure I don't stink! Nathan loves it; he has always loved his cousin so much. Thank you Daniel for being such a great helper. We love you so much. My sister-in-law Wendy is going to come over in the afternoon for a little bit so I can get some stuff done (like running down to the basement to get some laundry started). It makes the day so much easier when it's broken up with visitors. I'm trying to get us in a routine.
Thank you Ronda for all of your advice. It really is nice to hear that some of the things I'm trying to do are actually the right things. Your suggestions are so helpful also. Thanks so much!
Have a great weekend everyone. Please continue to pray for our boy and all the kids who need your help.
Love
Colleen
Wednesday, June 16, 2004 9:10 AM CDT
Yesterday was such a busy day. When I lay down with Nathan I fell asleep. Sorry for not updating. We got up early and went with my Dad to get flowers for the house. Then we walked down to Aunt Wendy and Uncle Eric's house to get all of our mail that they have been getting for us for 2 months - it was so nice, there were just a few things and no junk mail - thanks guys for taking care of all of that. Nathan got to play with Kenzie and Trystan for a while. Then we had to come home and write out all of our bills - more fun stuff! Then we had to go to a meeting at the human services office to re-evaluate our need for Medicaid. Then we came home to eat dinner and play for a while. Nana Rigo (my Mom) came over to play with Nathan and Uncle Adie came over again to help me plant the flowers and to finish putting down mulch. We planted 6 flats of flowers! I was exhausted by the time we got that done. But, Nathan had a great time playing with my Mom - he always does. She helps him to use his imagination and they think of the silliest things together. Thanks again for helping me.
I don't think I'm going to get the garage sale done this week. I would love to work my butt off today to get it ready, but I don't even have the stuff out of the attic and basement yet. So, maybe we'll do it next week. I hope so, because I'm in such a mood to throw things away that I might just end up pitching everything. I hope not, I've been saving this stuff for the last 4 years. Anyone who wants to come and help is of course more than welcome. Also, anyone who wants to get rid of some junk without doing their own garage sale is welcome to bring their stuff here too.
Nathan is doing amazing. Today, he was sitting in the middle of the living room floor and he was able to stand up on his own without anyone helping him or using a table for support. That means that his legs are getting stronger to help him push up. He is also doing great on the stairs. It will be a long time before he is able to do it alone, but he is trying very hard. It is hard not to think of how much easier it would be if he could see. I really need to focus on making things easier for him while he can't instead of getting frustrated because I know he would be doing even better if he could see. I have been trying to make him believe he has to do things on his own, but I am really right there to help if he really can't do it. I really don't want him to get frustrated. Someone asked me if we would be getting him a seeing-eye dog or a walking stick and someone asked about teaching him Braille. It is hard to think of those things, but I guess it makes sense to at least try to make life easier for both of us while he can't see and once he can we can get rid of those things. It's not like any of that is permanent.
His chicken pox are still only a few bumps and he doesn't feel sick at all. I'm not even convinced that they are really chicken pox, but I'm getting a lot done at home that I couldn't do if we were going to therapy each day. I know that might sound really bad, but since we couldn't really leave the room, there wasn't much that could be done with him that I can't do here. I play with him and make him use his left side, we go up and down stairs all day, we talk and read stories and he answers questions. He also learned a new knock-knock joke. We had been told that he should get back the information he already knew, but it would be harder for him to learn new things. We are also working on teaching him Scott's phone number, he gets silly and tells me our old number all the time but when he is ready to be serious he does know Scott's number which he was only told once before he got sick.
Well, we are off to do some running around. Hope everyone has a great day. I might be doing the updates during the day from now on, which might work better. I can give Nathan a little time to watch TV while I do it - he's watching Dora right now!
Please keep praying for our boy. Thanks for all that your prayers have already accomplished.
Love,
Colleen
Monday, June 14, 2004 11:02 PM CDT
WOW, a little whining goes a long way. I had so much help today I almost didn't know what to do with it. Thankfully the helpers knew what to do. My Aunt Liz was the first to arrive and she played with Nathan while I got some laundry started and cleaned the bathtub and toilet - don't get jealous because I get to do all the fun stuff! Then my Dad and his wife (Donna) got here with lunch, then my sister Sarah arrived with Tacos for dinner and she and Aunt Liz started cleaning my room and doing my laundry while we ate lunch. The two of them got me motivated to completely clean my room and even do some re-arranging. It looks so nice in here now. Aunt Liz cleaned out my closet including weeding out stuff I don't wear anymore and even putting away my winter stuff. There was no time for spring cleaning this year, I think I missed spring altogether. My brother Adrian came over and him and Dad worked on my yard - the grass got mowed again, the clippings got cleaned up, Adrian weeded my flower bed and went and got some mulch for me. It was so great. The whole time that was happening Donna played with Nathan, taking him for a walk outside then putting him in the bathtub for a ghetto swimming pool - he loved it. My next project is to get up in the attic and get all of Nathan's baby stuff down (I saved everything) and get into the basement to get all of the clothes (got all of those too) and it's time for a major garage sale. I hope I can get that done this weekend and go back to work next weekend. Those are my plans, but you all know about the best laid plans....we'll see what happens - I've got a great start! Thanks everyone for all of your help.
We didn't make it to therapy today. Nathan has a few bumps and we suspect they are chicken pox. I called the hospital yesterday and left messages and when they called today they said to keep him at home to see how he does. When Nathan woke up this morning he felt like he had a low fever so we just watched him. He doesn't have anymore bumps, but I don't think they are going to let him come back since he does have a few. We'll still be going to outpatient therapy in Amherst once that all gets arranged and it will only be a few days a week and it's much closer to home.
Thank you to all of the therapists and nurses who worked so hard with Nathan while we were at the Rehab hospital. Erin, Mandy, Heather and Lisa he wouldn't be where he is today without all of you. Dorothy, Cody, Tracy, Molly, Liz, Linda, Parkey, Janelle, Joey, Kathy, Michelle, and all of the nurses in Rehab, thank you so much for putting up with Scott and I all the time, for entertaining us when we got bored and for dealing with all of our questions - you made our stay at the hospital much easier. We truly appreciate you for the gift you have and shared with us.
Please continue to pray for Nathan and all the kids we were in rehab with - they are all so special and deserve all the best in life.
Thanks again.
Love,
Colleen
Sunday, June 13, 2004 3:46 PM CDT
Wow! This is really hard. There, I said it, I've admitted that something is too hard for me. I need help! I could never imagine it would be so hard to care for my own son. I've been doing it for almost 4 year (over if you count the 9 months before he was born) and now I have to admit that I cannot do it alone. I am now a single (living alone) Mom of a disabled (blind) child who cannot be left alone for even a moment because he could fall again. That didn't seem so hard while we were at the hospital. We really did everything for ourselves, meaning we didn't have the nurses doing everything for him, but now I have to realize that I didn't cook any of his meals (Oh, thanks to Angie my neighbor for making dinner for me on Wednesday), I only had to feed him, I could leave him with Scott when I went to take a shower. Or, there were nurses around if I had to do something. There was always someone to talk to (an adult) now there are none. It is hard to believe how much easier it is to stay in a hospital than to be in your own home. I hate looking at the clutter in my room or in other areas of the house, but do not feel comfortable cleaning while he is up and once he goes to sleep, I either fall asleep too or try to take a shower which is almost impossible to do during the day. I put a load of clothes in the dryer on Wednesday and they are still there. Which reminds me, I should really go get them now since Scott came and picked up Nathan for a few hours so I could get some stuff done. I'm sorry to everyone who reads this everyday that I haven't updated in the past two days, but as you can see, it's been nuts. So, now I'm going to go try to get caught up on some of that laundry and maybe get some dinner for myself! Have a great night. Please continue to pray for Nathan, specifically, his sight, cause life would be a lot easier if he could see! Thanks again for all of your words of encouragement and support. We appreciate each of you so much. I'm not sure when I'll update again, but I will try each day!
Thanks again!
Love,
Colleen
Thursday, June 10, 2004 11:39 PM CDT
We had another great night. Nathan woke up a few times, but went right back to sleep. He also made it though the night without wetting his pants. He was very proud to hear that the space ships on his Buzz Lightyear Pull-ups were still there showing that he didn't pee in his pants. It is really nice to know he still understands the concept of pull-up training pants!
Therapy went well. His arms are still very weak, so Erin is working to strengthen them. She tried to get him to do the wheelbarrow walk on his hands today, but he spent most of the time with his head on the mat.
We will probably have to stay at the Clinic's Hospital for another week. They can do a step-down program. He can only go to the Center in Amherst 2 days a week, so we'll go back to the Clinic next week 5 days, the following week for 3 days and then to the Center in Amherst for 2 days.
Well, it's late and these days are very tiring. Have a great day! Please continue to pray for Nathan, specifically for his eyesight to return! Thanks!
Love,
Colleen
Wednesday, June 9, 2004 11:40 PM CDT
I slept well last night, Nathan didn't wake up at all during the night. We had a good day in therapy today. We basically had to stay in the same room all day the only time he left was when we went outside to walk up the stairs to the slide. He did really well with it. He doesn't get frustrated easily and maybe it's easier since he can't see that he's staying in the same room. Maybe this is all just part of God's plan. I always said I didn't really want him to start talking until they decided he could eat and he didn't - he talked a week after we started to feed him (he finally got full).
We took him shopping today for the first time. It was fun. We got body pillows to go around his bed. Even though it is only a mattress on the floor, it still seems like a hard fall if he fell off. I love saying this, he is soundly sleeping in his own bed right now!
Tomorrow, the social worker at the hospital and Scott are going to call the Rehab Center in Amherst that Nathan is probably going to go to for outpatient care. They are going to figure out when he can go. Hopefully, he is only going to have to have each therapy twice a week. We should only be at the Clinic until next Friday, June 18. We love the people there and the therapists are great, but it's time to be closer to home again.
Scott and I are still looking for a nice duplex to buy so we can both be as close to Nathan as possible. If anyone knows of one available, let us know!
Well, please continue to pray for Nathan and all the kids in rehab and maybe just all of the sick kids and their families.
Have a great day tomorrow.
Love,
Colleen
Tuesday, June 8, 2004 10:22 PM CDT
NATHAN IS HOME! He is sleeping soundly in his own bed right now. It has been over 2 months since that has happened. I am so happy and a little scared. I have to admit, I convinced his Dad to stay here too. He's sleeping soundly in Nathan's bed right now too! I haven't been alone in over 2 months and I didn't want to start today. We got a lot done around the house today (thanks to my wonderfuly family again for helping me!). My Mom and sisters Wendy and Sarah worked on Nathan's play room, Donna and the kids (Makenzie, Trystan and Daniel) worked outside, along with Uncle Eric (E Bone) who cut the grass and Papa Wilson and Nathan's Dad put in the rest of the air conditioners and took off the door to Nathan's room and the one to the play room so he wouldn't ever pinch his fingers or lock me out! And, Jamie played with Nathan the whole time - Thank you all so much - Scott, Nathan and I could never have come this far without out you!
We go back to Day Hospital tomorrow which is basically the same thing we have been doing, only we have to be there by 9:30 and I think they expect us to be dressed and showered already. Since Nathan is considered contageous with Chicken Pox as of today, he has to wear a mask when we go into the hospital and anytime he goes into the hall. He has his own room and toys to play with. He will eat lunch in his room unless we take him outside, that is the only other acceptable place for him to be. He will have therapy this week and next week, then we need to get him into another facility for outpatient care which should be only 2-3 times a week for each session (speech, OT and PT) unless the therapists say he doesn't need that much (they don't think he's going to need speech very much longer). Scott and I are checking in a place that is in Amherst which would be very convenient!
Sorry this is so short, but I feel more tired tonight then I have in a long time! Have a great night! Please continue to pray for Nathan!
Hi to everyone in Rehab - we miss you already!
Love,
Colleen
Monday, June 7, 2004 11:23 PM CDT
I'm home now, trying to get everything ready for Nathan's homecoming tomorrow. I cannot tell you how excited I am for him to be sleeping in his own room in less than 24 hours. We bought him a new mattress to put on the floor and I have moved all of his toys downstairs into our spare room so he can have his own toy room now. I know he is going to love that, I'm thinking about putting the TV in there so even when we want to watch it we can be together and he can play too. My Dad put up a gate at the top of the stairs so if Nathan ever wakes up in the middle of the night and gets lost or tries to go downstairs (which he's never even done before) he'll be safe there. Oh, and the lucky boy got an air conditioner in his room too! Mine isn't even in yet, but he'll be nice and cool tomorrow - maybe I'll have to go sleep in his room this time (any excuse to snuggle with him)!
I'm thinking we won't be home too much at first because we are supposed to go back for Day Hospital at least this week and maybe next too. Then we are going to have to find a place for therapy after that around here. I'm not sure how frequently he'll go for outpatient therapy, but I think we'll know more tomorrow.
We are getting a second opinion on Nathan's condition next week at Rainbow. Hopefully someone can figure out why this all happened so we can make sure it doesn't happen again. I'll let you know what they say.
Please continue to pray for Nathan's vision and all of the kids in Rehab and don't forget about Malachi! Your prayers are invaluable to all of us. Thanks again!
More tomorrow!
Love,
Colleen
Sunday, June 6, 2004 9:45 PM CDT
Today was amazing. Once again we got to see face-to-face some of the people who have been supporting Nathan with your thoughts and prayers through the past 2 months. Thank you to everyone who came to Nathan's spaghetti dinner today. He had a wonderful time. He really loves getting on that microphone and singing or playing his harmonica and just talking. We really have to work on getting him to keep his mouth off of it so he can be understood.
Thank you to MaryAnn's Pizza in Amherst for all of your donations and hard work; the Amherst VFW for the hall; the bartenders who donated their tips to Nathan. Everyone who made a donation - we had so many things to raffle off, it was awesome! Thank you all.
Once again to our families, you all know who you are - Thank you so much for continuing to work so hard for us. We know how blessed we are to have you all. The thing I am the most excited about right now is when Nathan is old enough to see how much he is loved and to see the outpouring of support and kindness and how truly good people are. It is easy to forget when you are living in a day-to-day society and watching the news or reading the newspaper but when you experience something like we have (and I sincerely hope no one ever has to-just take my word for it), you find out that the world is a great place and people are so very good. People you never knew existed come to you and will truly do anything for you. People you knew but have forgotten about pray for you and for your family. All of these things make you realize how lucky you are. And I really do feel like the luckiest person on the planet.
I brought back leftovers today for the nurses and anyone who wanted some and as we sat and ate some of the kids were talking about the Make-a-wish Foundation. Nick (the 13 year old I've talked about before) was telling us about what his wish was and he said it was for his family to be able to go to Hawaii. Then he said something about if it were his choice he would choose 76ers season tickets. I said to him it is his choice and he said that all of his family has taken off so much work and have helped him so much that he would rather do something for all of them. That was one of the nicest things I've ever heard out of a 13-year-old's mouth. It really makes you realize how situations like the ones these kids are in change them. I didn't know any of these kids before this, but I am so proud of all of them for their outlooks. Each of them has something different about them that make them shine. It is so much easier to see that here than in other settings. Thanks guys for giving me a new outlook myself!
We are still looking forward to going home on Tuesday. We will see what the powers-that-be here say tomorrow. I'll let you all know.
Have a great Monday!
Love,
Colleen
Saturday, June 5, 2004 10:32 PM CDT
Thanks, Scott for updating for me yesterday! Great job!
I'm not sure what is wrong with my computer at home, but it's impossible to get online right now. I'll get it fixed when I have a little more time to sit there and figure it out!
Anyway, on to Nathan news! He was a ray of sunshine when I got back here today. He was getting ready to take a nap and was using all of the usual excuses to get out of doing it, but this time some of them worked! It's a lot harder to tell him no right now. He asked if I could lay down with him for a second so of course I did! What else could I have been doing at the time that would have made either of us feel any better than to snuggle in bed for an hour? After what we've been through - there is nothing in the world I could think of!
He had all three therapies today; He got to ride the bike again in PT and even rode it up the hill. Jamie (Dad's girlfriend) came to watch him in his therapies and made his day. Jamie, you were all he could talk about today. Thank you for loving my son at times when I cannot be there to do it. I will always appreciate the impact you are making on his life! Just remember not to let either of the Gezzer men give you any crap! They will both try!
After his nap, we went to play in the gym (therapy rooms) again and played dinosaurs together, then to play on the computer here - he really wants to push the buttons (use the mouse), but since he can't see I don't want him breaking their computers - I'll let him play on mine when we get home. I cannot wait to get him home to play with his own toys and sleep in his own bed (well, it will be a new one) again. I want to get outside to work on my flower beds and have him out there with me rolling around in the grass. I'm just really happy it is summer time and we don't have to be cooped up anymore!
So, tomorrow is the spaghetti dinner for Nathan. He is so excited to be going out again to a big party! I know he's going to be an even bigger ham than he was at the steak fry. We cannot wait to see everyone again. It is so nice to see all of the people who are visiting this website and praying for him and who care so much about our family. You are all so important to us. Hope to see everyone tomorrow.
Oh, we are going home on Tuesday. The hospital has said that the discharge is tentative, but I really want to go. They have said the last few days that he will do better at home, so if that is the case then that is what we are going to do. We will come back for Day Hospital here, but only if it will continue to benefit Nathan. He will have continued therapies as an outpatient at some other hospital since the Clinic cannot accommodate him as an outpatient (their closest satellite is Westlake and they don't have enough spots available for Nathan). If anyone knows of a place that handles therapies for kids with head traumas in our area please let us know!
Please continue to pray for all the kids here in rehab. We have a new family member - Amanda. Also, Malachi isn't doing so great (check out his website again - caringbridge.org/oh/malachi). He could really use your prayers to continue! Thanks.
Have a great night!
Love,
Colleen
Friday, June 4, 2004 10:36 PM CDT
Dads first journal entry, mom is at home and cannot sign on. In OT Nathan did some more crawling and swinging. The crawling is helping him to use alot of different muscles. In PT they did the study with the electrodes and television. They put three electrodes on each thigh and three on each butt cheek. When he was standing correctly on both feet and using the right muscles the t.v. would turn on and it would do the opposite when he didn't. He was getting the hang of it towards the end. No matter what they throw at him he always figures it out. HE'S AMAZING. He also did really well in speech today. He was matching up sounds to the right animals. Before Nathan's accident if he didn't get his way he would cross his arms while turning his head to one side and in the cutest little voice he'd say fine. He did that in speech today when he couldn't have the dinosaur Lisa was holding because she was trying to get him to find A different one. Lisa looked at Colleen and said was that the old Nathan, it sure is. Thanks for everything.
Love,
Nathan's Family
Thursday, June 3, 2004 10:29 PM CDT
Today was great. First Nathan had OT with Erin and she helped him again to eat by himself. Yesterday in OT he did some crawling up a big wedge and got to fall into his Dad's arms. Nathan loved it! He's always been a Daddy's boy!
Today one of Nathan's doctors came into our room and told us that there was a possibility of him going home tomorrow. I was shocked; she said that if she hadn't been off yesterday and the nurse practitioner wasn't off today we could have gone home today. I am a little upset about this because the last time we had a family meeting was on Tuesday after the chicken pox initial scare and they still told us (after I specifically asked for a date) that it would still be 2-3 weeks. We have always told them that we need notice before we can leave. Now, they are telling us that we need to leave before Tuesday because of the chicken pox. You would think he's been exposed to the plague, not a childhood illness that almost every child is going to get at some point. You would also think they didn't know how to handle the spread of it. They have already told us that Nathan would need a mask to go to the therapy rooms and once he breaks out (if he does) he needs gown and gloves. So, we have been told basically that we are leaving on Tuesday. We have a lot of work to do before then, but I know we will get everything done. They have told us that he can come back for Day Hospital during the week and they would set us up with a private room in the abandoned area that would only be used for him and he would have to still wear a mask when he comes in. Scott and I are most worried about his progress being stopped because it seems like we are being shooed out too fast. The therapists want him to continue as he has been, but it seems the rest of the hospital doesn't want to deal with it. Kind of sad, but we will make the best of it as we have with this whole situation.
That is all of the excitement for today. Nathan is scheduled for a cool study starting tomorrow where electrodes are attached to his body that when he uses the correct muscle (the one they request him to use) it will trigger a reward (like a TV going on) and when he uses the wrong one it turns the reward off. It should be interesting to see how that works. I'll keep you posted!
Thanks again for all of your prayers and concern for us. Please continue to pray for Nathan.
Love,
Colleen
Wednesday, June 2, 2004 11:34 PM CDT
I think I'm just going to start every day with...Today was a great day, cause when I start to think back to just under 2 months ago and what bad condition Nathan was in, it makes me so very grateful for all of the people who love Nathan and who have been praying for him so much. I just want to make sure I thank everyone of you. I would love to send a personal thank you note to each of you, but I’m pretty sure that would take too much time away from Nathan.
Today we had our therapies a little messed up. We had speech at 9 with Lisa and Nathan played in the ball pit and talked on the pretend phone to me and to his Dad.
At 10 he had Physical Therapy and a woman from the Cleveland Sight Center came to observe Nathan. She told us that she thought he was doing great. She also said he is not using his vision at all (at least he didn’t while she was there), but that she is sure that at times he can see and that the memories of things he saw before are still there. It is weird to think his vision actually comes and goes (so, Mom, he might have seen your 2 fingers that time!). She also said she is fairly certain that it could come back. A kid was at the rehab hospital 2 years ago and didn’t start to get his vision back for 6 months after his head trauma. I know that made me feel a little better, but I still believe that with all of your prayers we don’t have much to worry about anyway! God has been smiling down on us for 2 months now, I’m sure he’s not going to stop now. But, please keep reminding him that we need the help!
Nathan got to go to the Book Mobile and pick out a movie (Snow White was his pick) and a few books. When we went outside to get to the Book Mobile, my Dad was just coming to visit, so Nathan was very happy to see him then. After the Book Mobile, Nathan and I went swimming for a while. He is doing even better in the pool, he really doesn’t need to be held at all and walks all over the place in the pool. Carrie put a weight on his left ankle to help strengthen it.
I had to come home at 2 with Mandy and Heather for our Home Evaluation. They really just measured steps and gave me a few suggestions on how to make his room more friendly for him. I need to put the hand rail back up by the steps and we are going to put a mattress on the floor so there is no chance to fall out of bed and to keep his independence on sleeping alone. Everything else was just fine.
Hope everyone has a great night. I’ll update more tomorrow! Oh, they took blood to test his levels for chicken pox but we won’t know for a few days - I’ll let you know what we find out!
Shane in Rehab is leaving in the morning, he is a very sweet kid and we will all miss him a lot. Please continue to keep him in your prayers along with the other kids in Rehab!
Love,
Colleen
Tuesday, June 1, 2004 9:59 PM CDT
Today was a crazy day. When we got back from his Occupational Therapy at 10 a.m. we were about to take Nathan to "school" with some other kids when the supervisor of nursing (Bill) came up to us and asked us when Nathan was exposed to chicken pox. We told him on March 15 - which was the last time as far as we knew. He said that someone called and said he had been exposed this weekend. Apparently my Sister-in-law Wendy couldn't get a hold of us and called the hospital to tell them that Trystan has chicken pox and Nathan had been exposed. It was a good thing she did, because they were ready to isolate him immediately. They actually did do that, Scott went and called Wendy and she said she had called, that Trystan's class has 3 outbreaks including him. Initially they told us Nathan would have to be in isolation from 10-21 days starting today - my first reaction was that we would take him home then and come back when this was over with. Bill told us that he could still go to therapy; he would just have to be isolated from the other kids and have to wear a mask in the hallways. That wouldn't be so bad. They told us to find out if he had the immunization or not, which we found out he didn't - because when it was time for him to have it (12 months) the health clinic he went to had run out and we never got it done after that. So, they can do blood work on him since he was exposed in March to see if his tutis (? I have no idea if that is the right word, but that is what it sounded like he said) levels were high because if they are then he has already built up immunity to it. That will be done tomorrow. Sorry Nathan! We then found out from the infections disease person that Nathan isn't actually contagious for 10 days after being exposed. So, isolation doesn't begin until June 8 unless he gets bumps, then it's immediate and would last until he stopped getting new legions and until they scabbed. If he doesn't break out by the 8th and if his tutis (still not sure about that word) level is low then it's isolation for 10-21 days - we have no idea how they decide between 10 and 21, but we would pick the 10 days! I'm sure it will end up being about 14. This has made life a little more nuts here, but at least if he gets it, he'll be in a hospital incase they get bad! I'll keep you posted! Oh, and for anyone who had their kids at the steak fry if you were around any of those Wilson kids, you might want to get ready, you could be in the same boat with us! The only good news is that he will not be contagious on Sunday the day of the spaghetti dinner! We are still planning to take him there.
The Sight Center of Cleveland is coming tomorrow at 10 a.m. to observe Nathan and to give suggestions to our therapists about how to help him cope with not being able to see. We didn't get good news from our team meeting today about his sight, but the doctors didn't think he would ever come this far. We really need your prayers to help him regain his vision. I just hope and pray that he didn't go through 6 eye surgeries to loose his vision anyway. Please spread the word to everyone who helped us pray so hard when he was his sickest that he could use some extra help in this department. I'll let you know what they say also.
I think that is all the excitement we had for today. Thanks again to everyone who has been praying for us. We will continue to need it so don't give up yet! You all have been tremendous help to us and we will appreciate it even more every time we see him smile or tell a knock-knock joke (even when he tells it wrong)!
Love,
Colleen
Monday, May 31, 2004 9:19 PM CDT
We had all three therapies today with different therapists, Nathan's regulars had the holiday off. We had a great day. Nathan can now sit up from laying on his back by getting into a dog position then push up onto his knees and then sit down. He has done it once or twice before, but now he does it consistently. It's very cool!
Nathan's voice has gotten louder and starting to sound more like his old voice. He even does some of the silly voices he used to do. His sense of humor is definitely the same.
If you didn't get to read the website yesterday (Sunday) check out the past journal entries for info about the steak fry. We had a wonderful time. Oh, and to everyone who was there and who helped - thanks again!
Please continue to pray for all of our kids in rehab, Nick, Evan, Shane, Christian, Jacob, Nathan and Ashley. We all need your prayers.
Thanks again for all of your prayers
Love,
Colleen
Sunday, May 30, 2004 8:07 PM CDT
Wow, wasn't last night an amazing night? I have never cried so much at a party before (happy tears of course). I have never felt so loved and blessed to have the family and friends that I have. Please know that Nathan knows how lucky we are for all of your support.
Thank you to Smitties baseball team. You boys showed how awesome parents turn out awesome kids. One of the boys even handed Nathan some money to help us out. We appreciate you guys so much. I know that everyone in our family was able to relax and enjoy the night knowing that professionals like you were running the food and making sure everyone ate. Thank you again! Thank you Daniel Spears for helping your team out again. Not only are you a great bat boy, but you were a very hard working for the steak fry too. I'm sure one day Nathan is going to want the privilege of being bat boy for your team if you will have him.
To my family (Mom, Gazie, Dad, Donna, Lynda, Bob, Grandma, Pam, Scott, Eric, Wendy, Daniel, Trystan, Makenzie, Adrian, Sarah, Joel, Uncles Ron, Jimmy, Ralph, Brian, and Chris Aunts, Liz, Cindy, Vicki, Krissy, Lisa and Jane, SueAnn, Shane, Jamie, Nichole, Matt, Scotty, Chad and Andre) and all of our friends; I do not know how to thank you all enough. Last night was an enormous success. I have no clue how much money was raised, but it was a night of family and really good friends coming together and doing something so incredible for a great cause. Nathan is one of the most appreciative kids ever. He will thank you all over and over again every time he improves and once he can see all of the photos that were taken and the video (thank you so much Uncle Ron for being videographer) he is going to appreciate you even more.
To the Eagles - I have had one amazing job before this (when I worked at LEMTA), but you guys take the cake. You have all showed me how easy it is to become loved by so many people that have only met me a few times. You are all such a fabulous group and your generosity has far exceeded my wildest dreams. I am proud to be a member of your Auxiliary and even prouder to be employed by your group. Thank you all for coming together for our son. This was by far the best steak fry I have ever attended and it was a privilege to have Nathan be your guest of honor.
Thank you to everyone who sponsored a hole and who donated prizes for our raffles. To everyone who won a prize and donated it back to Nathan (or to me - thanks Aunt Jane) you are another example of how lucky we are to have the family we have. Thank you Linda Gezzer (Nathan's grandma) for donating your winnings from the 50/50 raffle and to Erica Shea Frederick and Gary and Bunny Lane for giving back your winnings from the reverse raffle!
Mick, thank you for the awesome work you did on Nathan’s videos. I cannot wait to sit down and watch them with him, it is so nice to have that gift from you!
I know how truly blessed Scott, Nathan and I are to be a part of this enormous, caring, loving, generous and surprisingly good looking bunch! Thank you again, I really wish I could rent a plane and write it in the sky how much you all mean to us.
Have a great week
I’ll update tomorrow! We do have therapies from 9-12, but we will look forward to visitors after that time.
Happy Memorial Day – eat a hot dog for me!
Love,
Colleen
Friday, May 28, 2004 10:12 PM CDT
Another wonderful day was had by all here in Rehab! Nathan just continues to amaze everyone here. They cannot believe he has been walking on his own. When his nurse came in for night shift she already knew he walked. We are so very proud of you Nathan.
He had all of his therapies back to back today with only a break for lunch at 12. It was a long day, but he got a well deserved nap at 3 and so did Mom! We had dinner then visitors and Nana Rigo stayed and gave Nathan a little trim job on his hair and Mom's too, then we got to spend some quality time just hanging out the three of us! It was really nice.
Tomorrow we have all three therapies from 9-12 then lunch, then a nap and we're off to the big party. Nathan is very excited to go, but he also thinks he's going home. We have been telling him that he's coming back to the hospital after the party, I'm sure it'll be hard to get him out of there.
Nathan will have a few words to say when we get to the steak fry tomorrow so we hope he will be willing to perform a little for all of the people who have been helping him to recover so quickly.
We cannot wait to see everyone. Please just remember when you see Nathan tomorrow that he cannot see you! Sometimes he gets a little frustrated about that, but he is actually coping very well.
Thank you all for your incredible support. Our boy would never have gotten this far without it. Please continue to pray for him, he needs it as much now as ever!
Love and thanks
Colleen
Thursday, May 27, 2004 9:34 PM CDT
So, for everyone who says Nathan will be walking soon, thank you for the positive thoughts because those work wonders for our big boy! Today in the courtyard, Uncle Jimmy, Aunt Liz, Nana and Papa Wilson, Aunt Pam and Uncle Scott, Jamie and Mom and Dad were playing with Nathan and I took him over to a little merry-go-round. When we got done, I took him off and had him stand to show Aunt Pam and Uncle Scott and Jamie who hadn't seen him do it all by himself yet. After he stood there for a minute, I told him to go get Aunt Pam and he did! Without a hand on him he took at least 15 steps on his own to get his Aunt Pam. It was incredible, until he got close enough to her and tried to reach for her and scraped his knee on the cement! But that didn't stop him. He walked from his room almost all the way to the Tub room for his bath. It was incredible. Our nurse Dorothy cried when she saw him do it. Thank you everyone for all of your prayers for our son, you have helped get him this far. We need vision to complete the package. We will continue to work on the walking but it would be so much easier if he could see where he was going! Oh well, God will give us what we need.
We had our family meeting today and the timeline for our continued stay here at the casa de Rehab Hospital is about 2 or 3 more weeks. That could include any time he will need at the day hospital where we would go home and commute each day.
This Saturday is Nathan's Steak Fry so if you got tickets, be sure to join us. Nathan has his 3 hour pass all ready to go! We will get there around 5ish depending on Nathan and how therapy goes that morning. We are looking very forward to seeing everyone there.
Hope everyone has a great day tomorrow! Please continue to pray for our Nathan he is proving how well prayers work!
Love,
Colleen
Wednesday, May 26, 2004 9:48 PM CDT
Nathan's day started with OT at 9 (we were supposed to get to sleep in, but Erin couldn't work with Nathan so her boss Sue did). We had a great time. Sue put a wrap on Nathan's left arm and he did a great job working with it. They made hand sandwiches together. He had a great time.
He had a break until he had PT at 11 and Papa Wilson came to see him. Dad, Papa and Mom went to PT and Nathan did great. He even took a few steps on his own. He is doing much better with his balance. He also had electrodes put on his leg to give him some "tickle" therapy to help him "find" his left leg better. He got to ride the bike again and did better on it than he did before he got sick. He was able to pedal it very fast when told to. He rode it all the way back to the unit.
Nathan was supposed to have school at 2:00, but we took a nap and when the teacher came to get him he was still sleeping. I'm sure anyone who knows my attendance record in school can see how that could happen to my kid!
We had speech at 3:00 with Lisa. Nathan continues to improve on his memory skills and conversation skills. She started to do a standardized test on him to get a baseline on his intelligence level and where he compares to other preschool aged kids. I'm not sure how he's doing so far, but he seems to be doing pretty good to me! but, I think I'm prejudice.
Tomorrow we have about the same schedule with time in the pool at 2. It's Dad's turn to go in with him and Carrie tomorrow. I know they will have fun.
Hope everyone has a great day tomorrow. Please continue to pray for our little boy oh, he told me today he's not a little boy, he's a big boy! Thanks again.
Love,
Colleen
Tuesday, May 25, 2004 9:42 PM CDT
Today Nathan had Erin help him to feed himself at breakfast. He did very well with the fork and spoon. We are working on some way to help him "find" his left arm. He doesn't seem to realize that "leftie" is a part of his body. He has said that it is not his, like it's a separate entity. They have used a body vest to help him find his torso and a wrap to help him find his knee to help him walk, so I'm thinking a wrap of some sort will help him find his leftie. He got fitted for a new wheel chair today. He got the kind with the big wheels so he can start to push himself around. This should be fun, with the left arm not helping; he'll just end up going around in circles. I hope they figure out a way to work the left one. He also had to help Erin get himself dressed. He did very well, but I think they are expecting too much from him that I wouldn't expect him to do until we figure out the left side.
We had a birthday party for Evan who is from Sandusky. He turned 11 today. Happy Birthday Evan! Nathan even sang Happy Birthday to him in a very loud voice.
We had an appointment with his neurologist today. When he went to the eye doctors they saw swelling in his right optic nerve which is how all of his illnesses started back in August. So, we had the appointment. Dr. Rothner said we should have another MRI done (which I have already decided that I'm not going home without one) and possibly another spinal tap to see if his pressure is elevated. Dr. Rothner would like everything done at one time, after reading the MRI results, he wants to come right down and do the tap while Nathan is under sedation so he doesn't have to go through any unnecessary pain. I'll let you know when we find out a date for that. If anyone knows of a good pediatric neurologist that is not affiliated with the Cleveland Clinic, please email me - I would really like a second opinion (we've had 3 different neurologists, but all from the same hospital) on all of this.
Thanks once again for all of your prayers, please continue to pray for our little boy.
Love,
Colleen
Monday, May 24, 2004 8:47 PM CDT
Nathan passed! He passed his swallowing study. He can now drink anything without thickening it. He can have ice cream (and he did before bed - for his treat). It was nuts, we got up at 5 a.m. and we had breakfast in bed together then watched cartoons then finally he fell back asleep around 8 a.m. and was supposed to have OT at 9 - Scott came in to wake us up at 8:45 and I told him to go away. We postponed OT until 3 so Nathan could sleep in. When we got up Scott told us Nathan could eat breakfast. There was a misunderstanding with the house doctor and it was supposed to be that Nathan couldn't eat after 10 a.m. We didn't have to get up at 5 a.m., we didn't have to miss OT. Oh well, everyone makes mistakes. The study was having Nathan eat 2 bites of pudding, a few drinks of thickened liquid and a few bites of thin liquids then a bite of a cracker. That was it, it was cool to see it all go down his throat on the screen.
He is still doing great walking. We did more today during PT. He got to ride a big tricycle today. He did a good job pedaling and really wanted to beat Mandy in the race. He did, of course.
He continues to amaze everyone. He is our miracle and makes me smile so much. Everyone who hasn't seen us in a week or more says I look happier than ever! I don't think I've ever been happier in my life! Thank you Nathan for once again making me smile! You truly are the sunshine in my life.
Thank you all for your continued support and prayers. Don't forget if you have tickets the Steak Fry is this Saturday starting at 4 p.m. If you don't have a ticket, we still have some available for the spaghetti dinner June 6 at the VFW in Amherst.
Please keep praying for our son.
Love,
Colleen
Sorry yesterday's post didn't show up, I did it and thought it worked, but apparently not! Sorry!
Monday, May 24, 2004 8:43 PM CDT
Nathan passed! He passed his swallowing study. He can now drink anything without thickening it. He can have ice cream (and he did before bed - for his treat). It was nuts, we got up at 5 a.m. and we had breakfast in bed together then watched cartoons then finally he fell back asleep around 8 a.m. and was supposed to have OT at 9 - Scott came in to wake us up at 8:45 and I told him to go away. We postponed OT until 3 so Nathan could sleep in. When we got up Scott told us Nathan could eat breakfast. There was a misunderstanding with the house doctor and it was supposed to be that Nathan couldn't eat after 10 a.m. We didn't have to get up at 5 a.m., we didn't have to miss OT. Oh well, everyone makes mistakes. The study was having Nathan eat 2 bites of pudding, a few drinks of thickened liquid and a few bites of thin liquids then a bite of a cracker. That was it, it was cool to see it all go down his throat on the screen.
He is still doing great walking. We did more today during PT. He got to ride a big tricycle today. He did a good job pedaling and really wanted to beat Mandy in the race. He did, of course.
He continues to amaze everyone. He is our miracle and makes me smile so much. Everyone who hasn't seen us in a week or more says I look happier than ever! I don't think I've ever been happier in my life! Thank you Nathan for once again making me smile! You truly are the sunshine in my life.
Thank you all for your continued support and prayers. Don't forget if you have tickets the Steak Fry is this Saturday starting at 4 p.m. If you don't have a ticket, we still have some available for the spaghetti dinner June 6 at the VFW in Amherst.
Please keep praying for our son.
Love,
Colleen
Sorry yesterday's post didn't show up, I did it and thought it worked, but apparently not! Sorry!
Saturday, May 22, 2004 10:31 PM CDT
We had our weekend therapies this morning and Nathan did amazing. He and I stayed in the room after OT and worked on him laying on his belly and lifting his head. He hates to do this during his sessions, but he did great today. I put him on my stomach and he did it great, he was even smiling while we did it. He held his head up for 20-30 seconds at a time.
A choir came in during his Speech therapy and we got to hear them sing. Nathan loves music and bopped his head along with them. He got to say Thank You to them really loud which is what we are currently working on (using his loud voice). Marcy suggested we take him to an Indian's game so he can yell to the team to practice his volume.
During PT which was his 3rd therapy in 3 hours, he did amazing. We took him for a walk, Nancy put an ace bandage type wrap on his left knee which helped him become aware of where it was and he walked great. We walked down the hall to get a sticker, back down to the end and then halfway back to the therapy room. He did phenomenal! We are so proud of him.
Nana Wilson, Trystan and Daniel came back from their Disney cruise to see a completely different kid than the one they saw before they left. I know they were amazed by his progress. Daniel is almost 10 and cried because he cannot believe how great Nathan is doing. Isn't that sweet!
Thank you all for your prayers, please continue. Nathan has his swallowing study on Monday to see if he still has to have his liquids thickened. Hopefully they say no so he can start drinking water again.
Have a great Sunday. Check out the new pics!
Love,
Colleen
Friday, May 21, 2004 8:41 PM CDT
Today was another fantastic day. Nathan continues to improve. He spent about an hour in the pool today. He was able to walk and balance himself in the pool. He is favoring his right side, but we knew his left side has been progressing slower than his right. He had trouble and cried when we tried to get him to walk in PT and really didn't want to put his left foot down.
He was playing in OT today with play dough and when Ryan (stand in for Erin today) asked him if he was ready to put it away he said no, he wanted to give it to his Dad. He did and then Ryan asked him what he gave his Dad and he said a Bear - we had used cookie cutters on Monday to make shapes with the play dough and he made a teddy bear for Scott and a Diamond shape for me. He remembered that he gave his Dad a bear. He then told Ryan he wanted to give one to me and said it was a diamond. They have told us that Nathan's short term memory is very bad which is typical after a head injury, but this showed that he remembers some things.
He also started to drink out of a straw. With the amount of fluids he has to drink each day (about 1000 cc) it is easier to get it down. Once he has his swallowing study on Monday and when he passes he won't have to have his liquids thickened anymore and it will be much easier to get the liquids in! Nathan has always been a good drinker - he really likes milk, but has also been good with water. We haven't thickened water yet, I'm just not sure how that will taste and it might make him not want it anymore so I'll wait until Monday to worry about that!
This evening I told Nathan we could go to the computer and I would tell him all about his website and we could look for some fun stuff for him on the computer. He was laying on his belly on the bed and I told him to hurry up if he wants to go he had to get moving, and he pulled himself up from laying on his belly to up on his knees ready to go! It was great to see. I haven't been able to get him to do it again, but once was great! He is getting stronger everyday. Thank you everyone for all of your prayers.
We have new kids in Rehab and some others have gone home. Please continue to pray for everyone. Malia, Ashley, Jacob, Erica, Shane, Nick and Evan!
Have a great weekend!
Love,
Colleen
I just found out that a very close friend of our family is in the hospital with a collapsed lung, but is doing better. Please say a prayer for Renee to have a speedy recovery! We are all praying for you Nee! Get better soon!
Thursday, May 20, 2004 11:43 PM CDT
Our little man is making such incredible progress. Every day when we take him to therapy they tell us that he is doing better than yesterday. We took him today to see the eye doctors who took care of all of his past surgeries. He cannot see out of his left eye from the detached retina's he had. We now know he cannot see out of his right either except for shadows and some light. We are going to need lots of prayers to give him his vision back. His sight loss in the right eye is due to the bleed on his brain, it could heal, but we need your help and God's hand to make that happen. Please continue to pray for our little miracle.
We took him back to the PICU again today and amazed even more people there. These people were not sure if the work they did to save his life would have a good result. They thought with the extent of his brain damage that he would never have a good life. Thank you Nathan for proving them all wrong. They are happy to be wrong too!
Nathan continues to try to walk. He wants to put his feet on the groud all the time. We are letting the therapists take care of the walking so we don't try to help him and have his legs be in a wrong position. We will put this into their hands.
Nathan played with Play-Dough in OT and really did well, he is ripping it apart and Erin says it is good for him to try to roll it into balls and use his fine motor skills to play with it. It also keeps him very calm.
Thank you all for your continued support and prayers. We appreciate each of you tremendously!
Love,
Colleen
Wednesday, May 19, 2004 10:27 PM CDT
Today was another amazing day. Nathan remembers so much. He is doing fabulous. His personality is the same, he makes jokes, and he laughs at ours. His voice is so incredibly sweet. It is soft and when he makes an infliction, it is so sweet. I have missed this boy so much. My eyes leak almost every time I hear him. I didn't think I'd ever hear him again.
So, this is what happened. Scott and I were alone with Nathan in his room and I was about to go take a shower, he needed to get dressed for PT; it was about 10:40 a.m. I asked him if he wanted to wear his new Lion King 1 1/2 shirt and he said "yeah". I guess he was just waiting for something good to wear. He looked as surprised as we were and as happy as we were that it worked. He then said yeah to every question we asked. Scott asked him to say hi and Bye then Mom and he said it all. We both asked him to say I love you and he said it with both Mom and Dad. It was great. He is having a hard time remembering things, like in speech, who was in the room with him, or different things that Lisa asked, but he knows how to spell his name still and he knows our old phone number. He remembers words to songs. He sang "Fruit Salad" to me from the Wiggles. I didn't think I was ever going to hear that again and was so happy before that I had it on video. Thank you, God for answering all of our prayers. We have a lot of work to go with Nathan. We have been told from the beginning that he may remember things he knew before but would have a harder time learning new things, oh well; we'll just have to work harder.
Nathan took quite a few steps today with help, they are small steps, but he is trying to remember how to do that too. His left side is weaker than the right, but we'll work on that too.
Nathan peed in the potty three times today. When I ask him if he has to go, he says yes and goes. Everyone here is amazed at his progress. I've had nurses say they haven't seen a kid progress this fast since they've been here.
Thank you all for your prayers, it is because of all of you that he is doing all of this. We are so happy. We will definitely (God willing) bring Nathan to the steak fry and spaghetti dinner. I hope he is talking a little louder then, it's kind of hard to hear him. But you can all see his bright smile in person and hear him laugh. Thank you again. These benefits are now celebrations of his accomplishments instead of sorrowful events for his benefit! There is a lot to celebrate right now!
Thank you all
Love,
Colleen
Tuesday, May 18, 2004 6:54 PM CDT
This has been one of the best days of my life. He is talking and better than that, he is understanding and talking about stuff that happened before he got sick. He knows all the people who come to visit him. He is doing amazing. We are so proud of him. Some things are slow coming out, but he sure does take the time to think about it! You have to give him a minute, but he figures it out. Today has been a day of miracles. Nathan just got done putting on a concert with his harmonica while being accompanied by Papa Rigo. Everyone clapped and cheered when he was done. Thank you Nathan for making me cry and laugh at the same time. You have truly brought more joy to my life than I ever knew was possible.
I'm going to work very hard to get pictures up of him today! Keep checking the photo album.
Thank you all for all of your prayers and support. We truly appreciate you and thank God for having his hand on our little boy through all of this. We would never have made it this far without Him!
Love,
Colleen
Tuesday, May 18, 2004 9:56 AM CDT
NATHAN IS TALKING!!!
He just said YEAH, HI, BYE. He said DAD, he said MOM, he said Mom, I love you! He said Dad I love you. He is TALKING!
His voice is so sweet and soft, but he is talking! NATHAN's BACK!!
More Later
Thank you all for your prayers! You have all made this happen! Thank you so much!
Love,
Colleen
Monday, May 17, 2004 10:10 PM CDT
I have been so excited to write this journal entry! Nathan pulled his ng tube out today and the doctor said to leave it out and see how he does without it. If he doesn’t drink enough during the day they would put it back in at night. He looks like men do when they’ve just shaved their mustaches.
Today in speech he started to raise his hand to signal "yes". First Lisa asked who wants the ball and Nathan raised his hand. Then she asked if he wants it and he raised his hand to say "yes". It was so amazing. We had planned to take him on a field trip (supposed to be to Legacy Village, but ended up at the Beachwood Place Mall) with some of the other kids here, Sierra, Cera and Nick went with us (along with Katie, Carrie, Eric - all therapists and Nick's Uncle - sorry, I never got his name). While in speech, we told Nathan that we would take him to MickeyD's for dinner and he could get a happy meal with chicken McNuggets, but we couldn't remember what kind of sauce he wanted (anyone who has ever taken Nathan to McDonald's knows he loves sweet and sour sauce on his nuggets) we kept trying to figure it out and told Nathan that he had to tell us what kind. Lisa helped us work on it and when she asked him if he wanted BBQ sauce he raised his hand "yes" we were very confused, but asked him again later and he said "yes" to the sweet and sour sauce. I think BBQ was the first sauce that he recognized or it may have been the way she told him to raise his hand if he wanted BBQ. It seems like if you tell him to raise his hand first he does it because you told him to.
So, we were in the car getting ready to go on the field trip, waiting for everyone else to get into the Hospital's van (we all wouldn't have fit with Nathan in a car seat so they let us drive ourselves). I got on the phone to call my Mom because Nathan loves to talk to her on the phone and when she asked him if he wanted her to bring Papa with her to see him, he NODDED yes! He really nodded his head! She then asked if he wanted Papa to bring his harmonica with him and one for Nathan (they've been playing together for years) he nodded again.
I don't think I've felt this good in about two months! We asked him a ton of questions while we were gone and he kept answering them. I asked him if he wanted to go get a present for being such a good boy and of course he nodded yes! We bought him a few new Buzz Lightyear items at the Disney store (but made him decide on everything). He got new Buzz Lightyear pajamas and he picked them out himself by choosing between green and blue ones! We think he deserves them! Then when we were leaving the Mall the lights kept going out from the storm and we were all on the second floor and didn't know if we could get all the kids downstairs with their wheelchairs (Nathan would have been a cinch, but Nick is 13 years old). Luckily, Nick was already downstairs and we found out that there was a door on the second floor that led to the parking lot so we got picked up there. Of course it started pouring when we were getting the kids in the van and car. I had to change Nathan's "pants" in the car and he got a little mess on his clothes so we put on the new pajamas! He looks so nice. When we got home, I asked him if he had fun, and with a sly smile on his face, he shook his head no! So, I told him that I would take the pajamas back and he nodded yes! It was so nice to see his personality coming out! We asked if he was tired and wanted to go to sleep and he raised his hand to say "yes". So we tucked him in with no tubes, no machines and we cheated tonight and didn't put on his casts or arm braces - sorry Erin and Mandy, but we needed to give him one good night of sleep! I told him if he needed me (it's my night in the room) to just call for "MOM" and he smiled! That would be the best sound ever!
I really feel like I have my little boy back! I've missed him so much. Even if he never talks again, I know his mind is working in there. He knows us, he knows himself and he is doing amazing! I have never been prouder in my life! Thanks for all your prayers which made all of this happen for us. I'll keep updating you on Nathan's progress, please keep praying for him!
Love,
Colleen
Sunday, May 16, 2004 9:08 PM CDT
We had so many visitors today. Nathan got to see Uncle Adie, Aunt Liz, Nichole and Matt, Aunt Sarah and Uncle Joel, Aunt Pam and Uncle Scott, Jamie and Mr. and Mrs. Accordino. He is quite a popular kid! He also continues to dazzle everyone with his brilliant smile!
Nathan continues to eat like a champ. He is eating more than I think he ever has. We are really hoping he will get the ng tube out of his nose soon. He pulled the piece of tape that is under his nose and pulled the tube out a little today. Nurse Tracy said it shouldn't have hurt him too much because he didn't pull the tube all the way out, but we think it was ripping the tape off that made him cry so much. I saw one of the most touching things today when that happened. Evan, a 10 year old boy here who also had an Intracranial bleed and a stroke, started to cry because he remembers how much it hurts to have that tube put back in when you pull it out. We really had to reassure him that it was the tape that made Nathan cry. It really makes you realize that we are all becoming one big family here and each other’s hardships remind us of our own. We are all pulling for each other’s quick and complete recovery.
Thank you to everyone for your prayers and continued support. We really appreciate each of you.
Please continue to pray for our kids in rehab. Have a great week, Nathan's starts at 9 a.m. with OT! We can't wait for Erin to see how well Nathan's hands are moving now!
Love,
Colleen
Saturday, May 15, 2004 8:29 PM CDT
Today was another great day. Nathan, Scott and I got to go to Nick's 13th birthday party. He had lots of friends here and people he's met since he's been here came to visit too. Thank you to everyone who sent him a card, it was really nice to see him open them and how much he appreciated that people are thinking about him.
Nathan ate breakfast, lunch, pizza at the party and dinner! He's going to turn into a real porker soon! That's fine with us, it just gives us more to love! He is drinking great hopefully he'll soon be off the ng tube altogether. He really hates having it in his nose. We are hearing that as long as he keeps up the great job of eating they won't need to do the g-tube!
Nathan's sense of humor is so amazing. Nana Rigo had him cracking up for hours today. He laughs so hard his whole body shakes. One of our nurses, Tracy, was in someone else's room and I could hear her telling another nurse, Molly, that he was laughing so hard and how nice it was to hear that. He is a ray of sunshine in this place.
Nana tried to bribe Nathan with a new dog if he said Hi to her today. She even told him he could have Gus if he talked. It didn't work, but his laugh has much more sound to it and different ones too. I'm sure he's going to be talking very soon. He is trying very hard. Nathan and I are going to get up early tomorrow (9 a.m. - I'm such a dedicated Mom to sacrifice my sleep - ha ha) to watch Teenage Mutant Ninja Turtles. Nana told Nathan to make sure he woke me up when it was time and he thought it was hilarious that he is supposed to yell "Mom - WAKE UP”. If he does he can have any animal he wants, even Gus! I think Aunt Sarah said she'd buy him a pony if he talked to her! We are going to end up with a farm or zoo of animals if he doesn't talk soon!
Nathan had all 3 therapies today, but he's off all day tomorrow. We are going to have a relaxing day visiting our families. Hope everyone has a great day! There are lots of new kids here in Rehab, please keep everyone in your prayers. Thanks for praying for all of us!
Love,
Colleen
Friday, May 14, 2004 10:17 PM CDT
Does anyone know what Nathan's favorite thing to drink is? Chocolate-Strawberry Milk. He got to drink some today! The first time in over 6 weeks. Check out the photos to see how happy he was!
He has been taken off the daytime feeds of pediasure. He will only get it at night from 9 p.m. to 5 a.m. He has improved leaps and bounds today alone. Scott and I have been cleared to give him honey consistency liquids. We can even thicken them ourselves. That means he can have as much chocolate-strawberry milk as he wants! When Lisa had him in Speech, we spent the entire hour giving him stuff to drink. We started with the Honey thick juice, then she tried nectar-thick juice, he did great with both of these. Then she tried regular juice and he did great with that. Lisa was going to suggest that we should be allowed to give him nectar-thick juice on our own, but since it was the weekend, they went with the cautious side and only approved the honey-thick. I'm sure by Monday we will be back to giving him the nectar-thick liquids. Anyway, Nathan has to take in 300 ml of liquid each day. If we can get most, or close to all of that in him through his mouth, they will be able to take out his ng tube. We are pretty excited about that possibility. Oh, Lisa also said she is pretty sure Nathan is going to be the case that just starts talking. She said he's just going to look up at me one day and say "HI Mom"! Wouldn't that be great? Sounds like something for me to pray for! Anyone care to join me in that?
Nathan starts his first Saturday full of therapies tomorrow morning. He has OT at 8 a.m. Guess I got lucky that this was my night to go home. Sorry Scott, hope you both get enough sleep!
Tomorrow is Nick's birthday and we are having a party for him on the unit at 1 p.m. Nick has a website at caringbridge.org/oh/nick if you'd like to wish him a happy birthday!
Hope everyone has a great weekend! I love you Nathan - have sweet dreams!
Love,
Colleen
Thursday, May 13, 2004 9:26 PM CDT
Well, what can I say? We've had another amazing day.
Nathan started this day with breakfast. He had waffles, sausage and even some thickened Chocolate Milk! He did great eating. Then he got on the floor with Erin and played in shaving cream (which he didn't really like).
Nathan had a ton of visitors today. He got to see Kenzie twice which always makes his day. Uncle Marc and Aunt Shellie brought up their brood, Becca, Dustin and Corey. Nathan was so happy to have other kids to play with! They all got to play with the therapy dogs. Nathan really enjoyed petting one.
He got to do some standing today in PT. Mandy and Heather set up some toys on a table and sat Nathan on a bench and he had to stand to play with the toys. He did amazing. We are so proud of how well he holds up his melon and how he is able to put the weight on his ankles. Dr. Henry, who injected the botox into Nathan's ankles and right wrist, says now that he wishes he hadn't put it into the right ankle because the left one has even relaxed so great. We like to hear that. Once again, Nathan is good at something he's doing, even healing!
He spent Speech with Lisa and Carrie (the Recreational Therapist and Aquatic Therapist). They played with bubbles and switches. Lisa programmed a switch to say yes if you pushed one side and no if you pushed the other. When she asked Nathan if his name was Nathan, he pushed yes. When she asked if his name was Bob, he pushed no. He did a great job turning on a choo-choo train by pushing it. They both said he's done even better than yesterday! Can't wait for tomorrow!
Tomorrow is filled with Breakfast, Lunch and Dinner and of course therapy!
We are hoping that Nathan will soon be allowed to drink liquids with our help. His swallowing study is scheduled for May 24, unless they get a cancellation in which case, they will call us! We can be there in about 10 minutes!
He was very patient in his tilt table and has spent 45 minutes standing in it yesterday and today. He'll be running around in no time!
Don't forget, Saturday, May 15th is a boy who is here in rehab's 13th birthday. Could everyone please take a moment to send him a card to the address for the hospital below addressed to "Nick in Rehab". Thank you so much - I know it is going to make his day to get a ton of cards!
Have a wonderful day! Keep praying for our kids!
Love,
Colleen
Wednesday, May 12, 2004 8:12 PM CDT
My darling Nathan,
You have made me the proudest mother in the world. Your smile brightens my day no matter how dreary it feels. You can always find a smile on my face or a tear in my eye when I look into your eyes. You have continued to prove all the doctors in the PICU wrong. I hope you remember the looks on their faces today, while we were visiting, when they saw you and saw those bright blue eyes of yours looking up at them. When they saw you take your Indian's hat off your head 3 different times. The world is truly amazed at the strength you've shown. You have made me realize what a good person I must be for God to have given me such an incredible little boy to share my life with. Nothing in my life (not even fitting into a size 5 again) could make my self-esteem rise like you do. Seeing you eat pancakes and eggs for breakfast today was like seeing you win a noble prize. Watching you eat sausage and more pudding and drink from a cup (thickened cranberry juice) was amazing. Today I watched you push a switch to tell Aunt Sarah you love her. You also pushed one to tell her to "Back-off Major". Watching you push one that made music and you were really enjoying it made all those nights of playing Mozart to my unborn, unknown baby worth every second.
I have never been more proud of you or anyone in my entire life. You will walk again (we put you on your tilt table today and you stood there like a gentleman for 45 minutes playing music), you will talk again (when I told you that Lisa in speech told us she thought you would talk soon because of the mobility in your mouth and because you've already been giggling you didn't look surprised - when I said you would say "hi Mommy" and "hi Daddy" and "I love you" you smiled and laughed which brought more tears from Mommy) you will eat more (you get to have 3 meals tomorrow - breakfast with Erin and if all goes well, Mommy and Daddy get to feed you lunch and dinner).
Nathan, you are amazing! You were such a good boy today when we took you to the surgical consult for your g-tube. When the Doctor said you might not need one and we'd wait to schedule it you seemed as pleased as we were.
Well, my sweet boy - get some sleep (like you did last night when you only woke up twice with wet pants at 2:45 a.m. and with poopy pants at 7:30 a.m.) you have a busy day tomorrow. Sweet dreams sweet baby. Mommy and Daddy love you. Don't forget what you always tell me when I ask you "Who loves Nathan?" and you say "Everybody loves me"! You are right! Everybody loves you!
Love,
You’re Mother
Saturday, May 15th is a boy who is here in rehab's 13th birthday. Could everyone please take a moment to send him a card to the address for the hospital below addressed to "Nick in Rehab". Thank you so much - I know it is going to make his day to get a ton of cards!
Have a fabulous day everyone keep praying for everyone here at the hospital!
Love,
Colleen
Tuesday, May 11, 2004 9:00 PM CDT
WOW, today was AMAZING!
We had OT at 9 a.m. Erin had Nathan on the big ball again and he was doing good, but got cranky so I told her that he had been sucking the water off the swab thing last night and had his lips all the way around it and if she wanted I'd get some to show her. She went to their food supply and got some stuff to try with him. She first got bubble gum for him to try again. He did well with it and was sucking on the gauze to get the entire flavor off. Then she gave him a tiny piece of a cheese puff and he chomped it into nothing and swallowed it. Then she tried a piece (like a 1/4) of a fruit loop. He loved it. He ate it completely. She put pieces in different places in his mouth and he controlled them beautifully. Then she put vanilla pudding on his nuk brush and he sucked it off of there. She put some on his lips and he got that off too. He did great. Erin promised to talk to his speech therapist and made us promise not to feed him anything else until speech (luckily that was only an hour away).
Nana Rigo got to join us for speech where Glenda got him some apple juice and thickened it up (then she used a spoon to feed it to him). He also got to try more pudding, peach cobbler baby food and a whole fruit loop. He did amazing. He ate every bit, licked his lips and was looking for more. They are most worried about "silent aspirating" which would be caused by thinner liquids. They ordered a new swallowing study - which will take about 1 1/2 weeks to get the appointment. In the meantime we will go tomorrow for his surgical consult for the G-Tube and have the surgery scheduled for the end of June (which will put him at 3 months with the ng and that is the max he can have it in) best case, we cancel the appointment because he is eating enough and drinking enough fluids to sustain himself for all the hard work in therapy and to help his body grow. Tomorrow morning Erin ordered a soft tray for him for breakfast (pancakes were mentioned which are one of Nathan's favorite). So he will have breakfast in the morning (first time in 6 weeks). Each day he will get one meal to try to eat until he gets his swallowing study done, then they will increase his volume when they are sure it's safe!
Great job Nathan! We are all so proud of you!
We had our family meeting today and our Nurse practitioner (Judy) told us that acute therapy is usually 4-6 weeks long. She told us they will give us a few weeks notice before they send us home, but it should be in that timeframe. Get ready Lorain/Amherst Nathan should be home soon! Everyone is very happy with his progress and say he's doing great. The meeting was all smiles!
Nathan should sleep well tonight; I really hope so because it's my night with him and I'm beat! Have a great night everyone! Keep praying for Nathan and all our friends in Rehab.
Love,
Colleen
Monday, May 10, 2004 8:27 PM CDT
Today was our first day of acute therapy. Nathan did great. He went to OT in the morning with just Erin and Daddy. Mom went to Grandma Rigo's funeral - it was very nice of everyone to ask me how I was when they were mourning the loss of such a special woman. While Nathan was in OT Erin put him on one of those huge exercise balls that he loved to play on at Nana Rigo and Nana Wilson's houses. The day Nathan was due to be born (and refused to come out for almost a week) I spent the entire day bouncing on one of those balls trying to get him to come out - so he was destined to like them! Erin said he did great and Dad got some video for me on the camera.
Nathan and Scott got to go swimming today (I missed everything) and they seemed to love it. They were worried he'd be too tired for speech, but Scott said he did really well.
Nathan had speech with Glenda and did more mouth stimulation. I really think he's very close to being ready to eat. He can suck on one of those mouth swab things they gave us - he sucks all the water off because his mouth is so dry. I'm going to ask tomorrow if we can start doing more with him and try to get feeding started. That might be one of the major things that irritate him, they keep putting these rubbery things into his mouth that he can't eat and it doesn't satisfy him at all. It is like they are teasing him, then they even put flavors on them to make things worse. Hopefully things will progress a little faster with his eating so he'll be happier! Lisa his actual speech therapist comes back from getting married on Wednesday. Scott and I started doing our own Rappaport testing on him the past few days and we think he's at 0! We'll see what the experts say!
I brought Nathan's Toy Story book that makes sounds when you push the buttons and when I pushed the Buzz Lightyear button and he said "To infinity and beyond" Nathan cracked up. He is such a huge Buzz Lightyear fan; he was even Buzz for Halloween. He was a joy to be with this evening. Not much whining and lots of smiles. Nana Wilson was here and she had Nathan "sneak" up on Scott and I and scare us; he thought he was so very funny! He scared Papa too!
Nathan talked to Nana Rigo on the phone today. He was cranky when I told him we were going to call her, it was after his bath and he seemed very tired and ready for bed, but once he heard her voice on the phone he lit up and really sounded like he was trying to talk to her. He laughed a lot until it was my turn to talk, then he got jealous. Oh well, pretty soon he'll want to call everyone again - like father like son!!
If anyone is willing to "pound the pavement" looking for donations for Nathan's benefits please email me (cedelcorral@aol.com) by Wednesday, May 12. I will give each person who responds 3 or 4 places to go so we don't duplicate our efforts too much. Also, if you have already talked to anyone, please let me know that too. All you need to do is take a copy of the fliers we have made (I'll email it to you - don't worry about printing them in color-black and white will work just as well) and explain what has happened and ask if they have anything laying around they'd like to get rid of or any gift certificates they would like to donate. Most places need tax deductions and this is one way for businesses to get them. We need to have the donations at the Eagles meeting on May 23. Also, anyone who has been so generous to sponsor a hole in the golf outing, the Eagles needs a report of that (so signs can be made) and the payment by the meeting (just call my Dad about that, he and Donna are taking care of the report for the Eagles and collecting money jdwilson6@cs.com 440-985-3205) Thank you so much for everything you all have done for Nathan, Scott and I. We really appreciate all of you!
Have a wonderful day tomorrow and continue to pray for all of us here in Rehab!
Love,
Colleen
Sunday, May 9, 2004 8:37 PM CDT
Thank you all for your wishes for a Happy Mother's Day. It's weird, this is my fourth one and I really don't remember what I did on the other 3. I can honestly say, I'll never forget today. When I got back to the hospital today they were reinserting Nathan's ng feed line. He had pulled it out a few times last night and today. So he was crying so much when I got here. I got to hold him and calm him down instead of being the one holding him while they do a procedure on him. While I was holding him, my Mom put on a CD that she had brought which has a Happy Mother's Day song on it done by some professionals that is from Nathan. It was so amazing, my name was in the song, it said it was from my son Nathan and words about the past 3 1/2 years with him. I cried so hard just holding him and listening to the best Mother's Day gift I could ever get. Thank you so much Mom. Since Nathan couldn't tell me happy mother's day, it was awesome to have it in a song. I wish I would have thought of that for you! Now I guess I'm going to really have to come over and wash those windows! Someday!
We moved into our new room today (sorry Sharon, but at least we waited a day). It is really nice because it's right by the nurse’s station. For everyone who visits us, turn right when you get to the nurses station. You can't miss us!
After our exhausting move two doors down, Nathan and I needed a nap. We put a blanket on the grass outside under a tree and both took a nice nap for about an hour. It was probably the best sleep I've ever gotten. It felt so peaceful.
Have a great day tomorrow. Thanks to everyone who is still praying for us. We would love some prayers for Nathan to learn to talk again! It worked for the swallowing, let's try this!
Love,
Colleen
Oh, if you haven't looked, I put new pictures in the photo album and they worked!
OOPS, I goofed. The email address I gave for my Dad and Donna is wrong. If you have any items we can raffle at Nathan's Steak Fry or Spaghetti Dinner email them at JDWilson6@cs.com or call 440-985-3205! Blonde Moment number 234,324,423!
Saturday, May 8, 2004 10:46 PM CDT
Once again, we had a marvelous day. Nathan was full of laughs for all to see. He cracked up at Nana and Papa Wilson when they told him about a goldfish they got that they named Nathan. He really likes the idea of being a fish! He didn't get to go swimming today again, but will go on Monday.
It was also a sad day because my friends Sharon and Malachi and Noah went home today. I hated to see her go, but she has to come back on Tuesday! It is true that misery loves company! Sharon made me laugh so much when life seemed so NOT funny. Thank you Sharon. You will truly be missed. God bless you to the entire Rayburn family. You are great people and remember that God does not give you more than you can handle with His help! You will be fine, but I'll be lonely!
I came home again today. I managed to make it all the way here without getting into a car accident. Probably because my Dad drove me all the way to Elyria so I could get my car, cause Scott wouldn't let me use his? Wonder why?
Anyway, I'm home and miss Nathan so much. Have sweet dreams little Goomba. I love you more than life! Don't start talking until at least tomorrow when I get back, okay? Thanks!
Everyone have a great day! To all the amazing Mothers out there; have a fantastic Mother's Day! Relax and enjoy yourself. Sometimes people want to do things for you, let them, it will make them feel good too!
Oh, we are looking for items to raffle at Nathan's steak fry on May 29. If anyone knows of a vendor or business that would be willing to donate anything (gift certificates, premium items, whatever) please contact Jim and Donna Wilson @ 440-985-3205 or JDWilson6@msn.com! They need the items by Sunday May 23 - there is a meeting at the Amherst Eagles that you can drop the items off at or just call my Dad about it! Thanks again
Love,
Colleen
Friday, May 7, 2004 9:07 PM CDT
It's Friday again and this site has been up for 3 weeks. There are 5368 hits on it right now. That is approximately 255 hits per day. You guys sure do know how to make someone feel important. I was going to print out his guest book to see how many entries there are, but it would have taken 35 pages. If there is any doubt whether prayer, love and support help a sick person get better check out these numbers. If you want proof that your prayers are working, just ask my Mom, Gazie, Sarah or Joel - when Gazie said HI to Nathan tonight, he started smiling and didn't stop laughing until I finally had to make them leave! The kid needs he rest! I'm pretty sure he's going to sleep soundly tonight. Thank you all for making him so happy - he always did like it when people came to see him. Nathan used to look out his window and if he saw my Dad's truck (especially the purple one) he would yell to me "Mom, your Dad's here" then go running down the steps to open the door for him.
Today Nathan had his hearing test and Scott's plan worked. Nathan slept through the entire thing and had good results. The Doctor told me he can hear as well as he or I can (I had to answer that with, "huh? could you speak up?" ha). He has to analize the data he got to see what he's hearing whether he's processing it or not, but I'm pretty certain he is since he responds to things we say to him.
He had speech and OT together today due to a scheduling conflict, but it worked out great. Erin and Marcy gave him the Rappaport test again and he scored 14 this time. He is still improving. We are always happy to see that. He got a 0 (which is what we want) when she put a light in his eye - he really backed away from it and lowered his head.
He didn't get to go swimming today cause the kid before him pooped in the pool! So it had to be closed for at least an hour. Instead he had a music class with Malachi and Noah. It was nice. Nathan has always responded to singing (even the really bad singing he hears from me).
He got his new Bi-Valves (which are his casts with tape and velcro) today. He has to wear them when he sleeps and can keep them off during the day. Mandy suggested we keep him in his shoes when he's not wearing the Bi-Valves - he looked so much like his old self today - he had on tan pants and his tennis shoes and looked ready to go run around! Soon!
Scott went home tonight and I know he's missing Nathan like crazy! If you see this tonight, Scott, Nathan says he loves you and misses you too and you should have a good time and sweet dreams! He'll see you tomorrow.
Malachi is going home tomorrow morning. Good luck buddy! Please continue to pray for him and especially his Mom, Sharon, they say it's very hard on the Mom when you get home! Plus, she's going to miss Scott and I a lot! Bye Noah!
We should be getting a new room soon, I'll update the room number as soon as they are out of the parking lot (HAHAHAHA)!
Everyone have a great weekend - Keep praying for everyone here at CCCRH!
Love,
Colleen
Thursday, May 6, 2004 9:18 PM CDT
For Nathan today was a good day. He got his casts off and his feet look good. The therapists were able to get both of them into neutral positions (90 degree angles). Nathan did great in Physical Therapy after having the casts removed. Mandy and Heather video taped him for Heather's schooling. Once again Nathan is a case study! He's gonna be famous, or not! Whatever!! Scott got to be the camera man - he loves when they put him to work! Nathan sat on a small bench with his feet on the ground and Heather only had to hold his back a little bit. He did a great job holding his big melon up!
He had OT at 9 a.m. and did great with Erin. He got to have some Tang powder on his NUK brush (the little thing they put in his mouth to stimulate it). He also got to suck on a purple sucker. He was trying very hard to bite it. Erin won, and Scott ended up eating the rest after she got it out of his mouth. It seems like he really wants to eat something. I hope they try a little more tomorrow.
Nathan got to go in the pool with Kerri today. He really seemed to like that. He will go back tomorrow with Heather (from PT) and Kerri. They will do some of the same things that they do at PT and OT only in the water. It's a good resource because in the water he doesn't have to worry about holding his legs or hips just his head and he can be stretched more. Papa Wilson was here while he was swimming and hopes it will turn Nathan into the "water bug" that Trystan, Daniel and Makenzie are. We were also told that Makenzie could go in the pool with him too (when Daniel or Trystan don't have school and if they want to help, they could go one at a time too). He is so mesmerized by her that it will be great for him. Scott and I are also encouraged to get in with him. When someone like Heather is available to get in with Kerri, they don't need us as much, but when she is alone it is better for us to help.
We have changed Nathan's Adavan (sedative) schedule again. He will now only have it between 12 a.m. and 5 a.m. if needed. This is great because he’s doing more sleeping on his own.
Tomorrow they are going to try the hearing test again. This time Scott has worked out a schedule so Nathan will be sleepy just before the Doctor gets here. I hope it works! We know he hears us because he responds to our commands, but now we'll have a better idea of how much he hears.
Today was my brother Eric's birthday which is the Anniversary of the day my Mom and Dad became a Mom and Dad. I just want you to know that we all love you so much and admire all that you have done for us. When someone tells me I am a good parent, I know I only have the two of you to thank. Thanks Eric for being their guinea pig and for making things easier for the rest of us to get away with!
Today is also a sad day. My Step-Dad's Mom died. Mabel Rigo was 86 and had been sick for a while. She died peacefully this evening. Gazie was with her today and told me that she always asked about Nathan and they talked a long time about him today. Now I know that the "team" that is working for him in heaven just got a little stronger. We send our condolences to the entire Rigo family. She was one of the nicest women I've ever known. She will be missed.
Please continue to pray for Nathan and all the kids here. We know your prayers are working. We really are becoming one big family here helping each other and pulling together for support. It isn't as bad here as you might think. It's better than trying to do this alone! Thanks Sharon for keeping us laughing! We will miss you when you get to go home (if you ever go home)!
Love and God bless every one of you,
Colleen
Wednesday, May 5, 2004 9:57 PM CDT
I just finished reading some of the guestbook entries and I always end up crying. Nathan is so lucky to have so many people praying for him and the kind words you've expressed to Scott and I are like therapy to us. I know that there are so many times when we think about what we could have done to prevent this from happening to Nathan. If only we had questioned the doctors more when they said he had pseudo tumor cerebri, if we had asked for another MRI or cat scan when he was having eye surgeries, if only we had gotten a second opinion, there are so many questions we could have asked. I never knew that the brain was so very complex and that something could short circuit at anytime for a million different reasons and even the best Doctors don't know why. I know that at the time it was all happening we just thought, it doesn't matter what caused it as long as we can make him better, as long as he's not in anymore pain. Scott and I put our faith in the hands of the Doctors then, instead of in God's hands. I think now we know better. Now we've realized that the Doctors make mistakes too and are human just like we are. No matter how good you are at your job, you will always make mistakes for forget something, or not follow-up on a task. It is the same with Doctors. Now my biggest regret is not finding out what else it could have been, not asking more questions, not getting that second opinion. And now my biggest fear is what if it happens again? What could be worse than what we are going through right now? I guess the reason I'm writing this is to put this reminder out there since there are so many people who read this website. Get a second opinion, question everything the Doctors tell you, get on the internet and read everything you can. You are the only one who feels the way you do for your children. The doctors have seen your symptoms a million times, but never on you. You may react different. Everyone's body is different. The more brains that are thinking about your condition the better results you’ll get. Ask friends and family for their opinion on what has happened, maybe they know someone who knows someone who had something similar and had a different diagnosis. Please think about these things the next time you go or take your child to the doctor. After all, they told me 3 different times that Nathan had the flu.
Well, that is all for my public service announcement. I think I'm PMSing and have been going through a ton of emotions today. But it did feel good to get that out!
Anyway, on to the real reason you came here. Nathan did better again today. He had a great speech session with Marcy (Lisa is getting married in Vegas this weekend). Nathan tried quite a few times to turn on a switch toy (it's a big jelly filled thing, that when pushed it plays music), it is very hard to push but he was trying. He played with Scott and I at the end of the session, Marcy had Scott move to Nathan's right side and call him (I was holding Nathan in my lap). Scott then asked for a kiss and I told him not to give him one, and Nathan did anyway. We did this for a little bit, just playing with him and he'd hesitate then give turn to Scott for the kiss then move his head back to the left and he laughed when we did it. Marcy was very impressed with his progress.
When we got back to his room Aunt Sarah and Uncle Joel were here and when Sarah asked Nathan for a kiss, he started to play with her moving his head away then back and he started laughing again. He has always been a funny kid!
We had a meeting with Judy who is like his nurse practitioner or something, she doesn't actually take care of him, but between her and the pediatrician, they oversee the care. Anyway, she had very positive things to say about Nathan. They want to cut back on his Adavan (sedative) so he didn't get any tonight before bed, but will still get it at 2 a.m. They really want to move him up to acute therapy beginning next week - 18 sessions a week, which will include Saturday. If he doesn't tolerate that much we'll just bump him back down to fewer sessions or his sessions don't have to last the entire hour. She said acute care usually lasts about a month, and that could include using the day hospital. She also mentioned that if he keeps improving on his mouth skills he may not need the G-tube, but we would still go for the consult next week. I really think he's going to be happy to get some flavor in his mouth.
Nathan was approved for Aquatic Therapy maybe starting tomorrow. He had to be checked to make sure all of his wounds are healed enough to get in the pool. They said Scott and I can help and get in the pool - that would definitely wake him up if he saw me in a bathing suit!! Guess we have to try everything. HA.
Nathan's casts come off tomorrow and Mandy and Heather will turn them into splints by adding Velcro.
I think that's all for now. Thanks again for all of your thoughts and prayers.
Oh, I took the information off about the Steak Fry on May 29th at the Eagles, it has been sold out. Hole sponsors are still available. My Dad has set up an account for Nathan at all Fifth Third Banks, just ask for the Nathan Gezzer Fund. There is also going to be a Spaghetti Dinner at the VFW in Amherst for Nathan on Sunday, June 6. I added the info where the steak fry info was. Thanks for everyone's help with all of this.
Please continue to pray for Nathan and all the children here at the Rehab hospital - Malachi, Cera, Talia, Evan, Marquis and Nick. There are babies here too, but I don't know any of their names, these are the kids in Nathan's unit. They range from just under 2 to 16 years old. Thanks again.
Love,
Colleen
Once again it is almost midnight so, Happy Happy Birthday Eric. We are so very proud of who you are and love you so much. We all hope you have the bomb day! You know Nathan would be singing Happy Birthday to Uncle E-Bone!
Tuesday, May 4, 2004 7:33 PM CDT
Well today was another great day for us here at the Children's Rehab Hospital!
Nathan's cousin Makenzie and Aunt Wendy came to visit him today and as soon as Kenzie came in the room he stopped fussing and paid very close attention to her. He was probably worried she would boss him around if he didn't!! They went outside and played "Dog and Human" just like old times, and Nathan got to be the Human, Aunt Wendy helped him. Kenzie was cracking him up trying to drive a car when she was supposed to be a dog! What a Doppie Doggie!!
Nathan was given the Rappaport test again. The last time it was given to him, he scored a 26 (which is moderate coma on the scale that goes to 44); today's score was a 16!! That is near coma on the scale and the next step is no coma!! He is responding better to voice commands (really does make him sound like a dog) and when they rang the bell he paused purposefully until the bell stopped then he started whining again. He also reacted to smell more consistently.
We had our family meeting with the "team" today. They had great things to say about him. Erin in OT said he did a much better job holding his head up today and when we leaned him to his right side he put his hand down to support himself (as if he was going to fall) which was great. Heather in PT (she's a student who works with Mandy) said he was doing much better for them also supporting his head which is a very big deal, cause he does have a big melon! Erin and Scott worked on Nathan's wheel chair and got it tweaked so it fits his body great! Thanks again!
Scott and I got an okay from the cardiologist at the Main Campus who did his ECHMO surgery to put him on the Amantadine and they said they have not had anyone develop more seizures after being on this. So, we decided to try it and gave Nathan his first dose at 8 p.m.
There was also talk about when Nathan might go home today during the team meeting. Some are saying it could be as early as next month. We would probably still come here during the day to the "Day Hospital" but then Nathan could spend his nights and weekends at home. It would be like having a full time job in Downtown Cleveland and commuting everyday. He would be here from about 9-5 Monday through Friday. We would have the same therapists, but at least Scott and I could sleep comfortably - and hopefully Nathan would too! I'll be sure to let everyone know as soon as more information is available. This is all going to depend on how well he does with the new meds and if he continues to "wake up".
Thanks for visiting and thanks for signing the guestbook! A friend of our families is putting together a scrapbook from this website for Nathan and is including all of the entries in the guestbook. Thank you so much Billie, we have gotten so many compliments for you on the book already - it is great!
Have a great day tomorrow! Keep praying for Nathan and for Malachi! These little guys sure do need it and are responding to them amazingly!
Love,
Colleen
Monday, May 3, 2004 10:07 PM CDT
What can I say; the days keep getting better and better. Nathan laughs all the time now. He laughed when Papa Wilson told him about playing in the bath tub with colored soap while he was getting his casts put back on. Now that is amazing, to make a kid laugh while going through that! Thanks Dad! Aunt Liz, Uncle Jimmy and Aunt Jane made him laugh this evening just being silly with him. He really laughs from his belly!
Today was a good day. Nathan had his casts removed this morning (at 8a.m. - that's just too early!) then he took a nap and when he got up we gave him a bath in the tub. Boy he had some stinky feet! He seemed to like the bath more than last week when we gave them to him.
Then at 11 he got his casts put back on! Yep, just 3 hours out of them and he will probably keep them on until Thursday then they will use these for splints by cutting them down the sides and adding Velcro so we can put them on and take them off. His left foot was doing much better (that was the one that had severe "drop foot") they were able to get it into a neutral (90 degree angel from his leg) position when they put the new cast on. His right foot went into a neutral position very easily as soon as the casts were taken off, but they don't want him to kick his right leg with the casted left one so they put both back in casts. The Botox injection will continue to work on his left ankle for about 3 months - he should be walking way before then :)
The doctors and therapists had their "team" meeting today and our primary pediatrician suggested we start Nathan on a drug called Amantadine. It is primarily used for Parkinson's disease and as an antiviral medication, but while they were using it they found it helps to "wake up" people with serious brain injuries more quickly. They wait until they see if the patient is starting to "wake up" on their own then they use this drug to speed up the process. So he should be spelling his name again very soon - wishful thinking! We have our Team meeting tomorrow and have a few questions about the drug because some of the side effects are seizures in people who are prone to them, so we need to make sure they remember he had one and people who have had heart failure should talk to their doctor before taking it - just want to remind them that he also went into cardiac arrest 3 times 3 weeks ago. Once they tell us that he's not at risk for these things we'll start him on it. Scott and I are very concerned with watching the amount of drugs they put him on and not over medicating him - we have the power of prayer on our side so we don't need as much artificial help! I'll let you all know tomorrow what we decide.
Overall, he seems much more alert and is moving his mouth around a lot and does a lot of what you tell him to. He's wearing diapers now (but don't tell him that, we just call them pants) and when we ask him to pick up his butt so we can pull his pants up he does - he's always been such a good helper! He also seems less cranky during the day and Scott had a good night sleeping with him last night. Hopefully tonight is just as good!!
Keep praying for our baby! He is definitely listening.
Also, there is a little boy here Malachi who is in almost the same state Nathan is in he has a web page too (caringbridge.org/oh/malachi) and could also use all the prayers we have to give! Thanks a ton!
Love,
Colleen
Sunday, May 2, 2004 9:23 PM CDT
Well, if you thought yesterday was good, you should have been here today.
I have to start this story with a little about Nathan; about 4 months ago while he was at my Mom's house she called her dog (Gus) a "dope" and it cracked Nathan up. Since then he has been calling everyone and everything a dope; he has even gone as far to call things a "dope on a rope". He's got a great sense of humor.
When My Mom and her husband (Papa) Gazie came to see Nathan today we brought him out into a common area to see everyone at once (Aunt Sarah and Uncle Joel were here too). I put Nathan right next to Gazie and he seemed cranky so Gazie started talking to him about Gus (the dog) and Gazie called Gus a "dope"; without hesitating Nathan started laughing again and the more Gazie called Gus a dope the more Nathan laughed. Then everyone started talking about silly things he has said, like calling my Mom Nana Banana - that got him laughing too. It was so different from yesterday because that was silly baby stuff that was using arms and goofy voices, today was about something he remembered being funny. He knew what the joke was. Aunt Pam and Jamie got here and were able to see him laughing too. He was really putting on a show for everyone.
I feel so good right now it is hard to explain. Thanks Gazie and everyone for helping him remember the things he loved before all of this sadness.
Scott and I feel so blessed because of our families who would never let Nathan down. You have all worked so hard to be here and talk to him even when he was in the deepest coma. You are making the biggest difference in his recovery because you love us so much. We thank you with everything we have and from the bottom of our hearts.
Love,
Colleen
Saturday, May 1, 2004 10:41 PM CDT
So, if you've read the guest book lately you already know the amazing news I'm about to add, but if not you won't believe it! Today while my Mom and Aunt Liz were here visiting Nathan we took him for a ride to get coffee (for us, not for him) and my Mom was entertaining him with her silly songs (which no kid can resist) and he started laughing. Yeah, I said LAUGHING! I would not lie to you. I cannot contain my excitement even hours later. He was laughing from his belly and had a beautiful smile on his face. I could see my little boy in that face for the first time in weeks. I cannot tell you how amazing it was. So, we took him outside for a while and she continued to crack him up so we got Scott to come out and see it for himself and I don't think he's ever looked prouder of his little man. I even got it on camera - one still shot and 30 seconds of video. I'm going to do everything I can to try to get it available for everyone to see. The photo is not that great, but if you have seen him in the past 3 weeks, you would know how amazing it is to see that face look so happy. His sense of humor is in there somewhere and aparently wants to come out.
I know you are all going to be happy to hear this news and I hope you will take it with you to Church today and update everyone who has been so amazingly praying for our son. Thank you all. You know your prayers (and my Mom's silly songs) have made this one of the best days of my life!
Oh, Nathan got his new wheel chair today. It was left by an annonymous donor at my Step-mom's office. Thank you so much whoever you are! Nathan fits great in it and it is very cool looking! I know when his physical therapist sees it she is going to be very impressed! Thanks again!
Have a great Sunday! I'll give you more tomorrow!
And, since it's almost midnight - Happy Birthday Uncle Adie! Nathan and I love you so much and feel so very lucky to have you in our lives. You have no idea what an impact you are making on that little boy. You are a great role model for him and for me. I hope you have a wonderful day!
Love,
Colleen
Friday, April 30, 2004 10:36 PM CDT
Here is your second update for the day. HA! I'm at home right now and I feel a million miles away from Nathan right now. Scott and I agreed that I would go home today and tomorrow he would. I'm sure it is what I needed, but it still feels very weird.
On my way home I got into a car accident! Maybe that was God's way of saying I shouldn't have gone? Maybe not, maybe I just wasn't paying enough attention to the road. Maybe it was just a blonde moment! I'm alright, I was driving Scott's car so my car is still okay!! Sorry Scott, not much damage! The woman I hit was very nice and even said she would pray for Nathan.
Anyway, on to little Nathan. He had a rotten day today. He didn't sleep at all last night, but we stayed in bed until after noon (which still meant we only got about 4 hours sleep). We had to postphone his Occupational Therapy Session until 2 p.m.
He was supposed to get a hearing test today, but noone told us that they prefered to have him sleeping for the test so we kept him awake. We tried very hard to get him to take a nap, but it wouldn't work. That test has been rescheduled for next Friday. Because we tried so hard to get him to sleep for the hearing test that we had to postphone his OT session until 4 p.m. But he finally got there and Aunt Sarah went with us. It was nice for her to see what he does in therapy. He was extremely cranky during the session due to the ng tube in his nose and that he didn't get much sleep, but he tried to do everything for Erin.
We got information on his G-tube surgery. They have scheduled a surgical consult (which they told us they were going to do while he was still in the PICU and obviously never did) the date of the consult is not until May 12. That is just for the consult - We are a little irritated by that, but what can we do? I guess Nathan has to spend the next 2 weeks with this tube in his nose. I'm going to get lots of sleep tonight, cause I guess I won't be getting much over the next 2 weeks. Anyone know any surgeons who could help make this happen faster? Just a thought!
Well, I'm off to bed. Have a great night Nathan, Mommy misses you tons!
Keep praying for him, he needs prayers for tolerence of his ng tube! When I requested prayers for help with swallowing that worked, he's doing great at it, hopefully this will work too!
Thanks again
Love,
Colleen
p.s. I put on some new photos, but they are HUGE! I'll fix them later, I gotta get to bed!
Friday, April 30, 2004 11:01 AM CDT
Sorry this did not get updated until now, but Nathan and I had a crazy night (he pulled out his ng tube and I had to watch him all night so he wouldn't do it again, neither of us got any sleep, but we made up for it by putting a pillow case around his hand and he got an extra dose of Adavan (sedative) but that didn't happen until 8 a.m.) and when I wanted to put it on I could not get AOL to sign on. Here is what I wrote last night and I will still try to update later today.
I am starting to sound like a broken record, but, Nathan had a great day today.
He had Physical Therapy and did very well. He was a little cranky, but he did great. He is really getting stronger. Mandy put him on his belly and he really seemed to like it.
He had Speech therapy and that went great also. He was sitting in Lisa’s lap and kinda folded himself in half. When she asked him to sit up, he did. He actually did it on his own (he couldn’t get his big melon up, but he did the rest of his body) – then she waited a little and asked him to do it again and he did!! She also asked him to open his eyes and to close them at different times and he did it every time. We are very happy with that. I cried again when he did each thing.
Then, at the end of speech we were putting him back in his chair to take him to his room to get ready for all of his visitors and he got a hold of his nose tube and pulled it out (not all the way, but a lot). When we got back to his room his doctor said to take it out and put in an NG tube, the one he had in went directly into his intestine, this one only goes into his stomach. Scott and I decided that it is time for him to get the G-tube. A few of the other mothers here have showed me their kids and it is really not that bad. They put a probe with a light on it down into his belly and when they find the right spot, it is like a punch through his skin and he has a small button sticking out of his stomach where the tube for feeding is inserted. It will be better for him for a lot of reasons, he is very aggravated by his tube and that is hindering his therapy, the tube is easier, because he won’t have the tube to be in the way when he is in therapy, the tube is probably hurting his throat as he can probably feel it. So, we think it is time to do it. We are getting a surgical consult scheduled through the clinic and then they will do it. I’m really hoping it’s done before the weekend, but I doubt it.
He had a lot of visitors today and was a little cranky. It is hard for him to deal with everyone here at one time so Scott and I are going to work on a schedule for all of his regular visitors. Anyone who usually comes to visit Nathan, please email me with any days you cannot come and we will work on this. It will be best for him to only have 2 or 4 people here at a time. We know almost everyone has to work so most people come in the evening and at the same time, so it’s best if everyone take a few days a week to visit. If you would rather visit during the day, please let me know that also. I’m hoping everyone understands why we have to do this, it’s the same reason Scott and I are doing everything these days, it’s what’s best for Nathan.
Oh, Nathan got a new bed today, it is a Veil Bed. He has been rolling around so much lately (which is great) that we are worried he will fall out of bed. It looks like a big tent so that is what we are calling it! He is sleeping in it right next to me right now and he looks so beautiful!
Have a great day, and keep praying for our miracle boy! God Bless all of you as He has us by giving Nathan to us.
Love,
Colleen
Wednesday, April 28, 2004 10:14 PM CDT
Today was supposed to be a less eventful day. Nathan did not have anything scheduled today.
He ended up getting a new splint on his right arm to help with the tone that is keeping his wrist bent and fingers in a fist. He is supposed to wear it 2 hours and off for 2 hours. It seems that the botox injection in his right wrist is already working. He has been moving his arm up to his head and bringing it down his face (where his feeding tube is taped, I think he hates the tape). Previously his hand was always in a fist, now his fingers spread out when he brings it down his face. This is good, but also a concern because he has been close to pulling his tube out. This is making them think again about a G-tube. One therapist suggested we have the tube taken out of his right side and re-inserted in his left side. We are going to find out if that would be a good option.
He is still swallowing a lot. It seems like a lot of work for him to do that and he gets mad sometimes. Nathan spends a lot of his time agitated. If he's not sleeping, he's mad. He has been sleeping better, more peacefully, and for longer stretches; especially at night. I actually got a good night's rest last night in his room. He only woke up a few times and it was very easy to get him back to sleep.
We are not sure how well the casts are working, but he seems to be tolerating them well. Hopefully they will stay on until Monday. Mandy (Physical therapy) doesn't want him to go the entire weekend without anything on his feet, so she is hoping to take them off Monday morning, then wait a few hours before putting a new one on his left foot to try to get it to a neutral position. Because it had so much tone it would have been too much of a stretch to get it there in just one cast. Uncle Eric has already told Nathan that he would remove the casts himself if they bothered him too much (I'm sure we remember how well that worked for him - he got his put back on the next day). Just in case, if anyone sees Eric at the hospital with a hacksaw, stop him!
Nathan was tested again today on the Rappaport Scale (I remembered the name this time). He had scored a 30 on Monday and today he was down to 26! We are very excited about that because the therapists who did the test seemed happy with it - always a good sign. One of the things he improved on was when they put a flashlight to his eye, he closed it to avoid the light. Even though we are sure he can see, previously he did not have the brain capacity to react to something that was bothersome. Now he's trying very hard. He also responded well to the pain stimuli in his right hand, Lisa (speech therapy) told us that when he consistently responds well they can stop doing that part of the test. I can't wait for that to happen because I am so sick of watching them roll a pencil across his fingernails. He also curled his lip when they put the alcohol swab under his nose.
I suppose that is all for today, quite a bit for not having any therapy sessions!
Thanks again to everyone for your prayers and for signing the guestbook. My Mom has been printing it out so we can keep all of it for Nathan to see when he is older. Know that you will forever be loved by him, he will appreciate your prayers and that you cared for him; that is the kind of kid he already was.
Love,
Colleen
Wednesday, April 28, 2004 1:48 AM CDT
I love writing this: Today was another great day. Nathan was very busy with his therapies. In speech he had a vibrating nuk (which looks like a plastic toothbrush that goes all around the handle) put into his mouth and he started to bite down on it after a while. His mouth is like any other muscle and needs to be stimulated before it will begin to work again. Later today he started to swallow his secretions, a lot. It's a great start to him learning to eat again. Seems like another sign that your prayers are working!
He had two casts put on his legs today in physical therapy. He will stay in the casts for 5 days (as long as he tolerates them) then they will take them off and probably re-cast the left foot because it has so much tone (which is why he looks like a ballerina). After the casts are removed they will be cut in half and the velcro will be added so they can be put on when needed and removed. He also got his botox injections today in each ankle and in his right arm. He has a lot of tone in his right wrist and hopefully with the injection it will decrease gradually in a few days and he will be able to use it better.
Occupational therapy was less eventful because it was right after he had his casts put on and Nathan was pooped out! He fell asleep toward the end of the session and we ended a little early.
We had our first meeting with Nathan's "Team" today. It was nice to see them all talking about him together and for each member to know what the others are doing with him. This is the first time since Nathan got sick last July the team of doctors he's beens seing have gotten together. Just to clerify, the doctors who worked on him then are not involved now, it's the team from this hospital that are gathering, but it makes me feel a lot better that they are communicating with eachother, which the others did not do.
Tomorrow he does not have any therapy sessions scheduled. Occupational therapy wants to come in and check the splints he was given at the Main Campus for his arms to make sure they are working the best they can and possibly make new ones. So, other than that, we should have a very relaxing day!
Please keep praying for our boy, he is getting much better with your help!
Love,
Colleen
Monday, April 26, 2004 11:13 PM CDT
We had our first Monday of full therapy sessions. Nathan had Occupational Therapy, where he showed Erin that he can move from one side to the other. It was great to hear and see her notice things that he is now doing that he wasn't doing on Friday.
Speech Therapy was equally as good, although the two sessions were scheduled back to back and Nathan really needed a nap in between, so he was a little cranky. The therapists here use a testing scale which consists of 11 tests and they rate each reaction 0-4 with 4 being the worst. The total score of 44 basically means the patient is still in an unresponsive - comatose (sp?) state. On Friday when Lisa did his test he got a 42 out of 44. Today when she did the test he got a 30. He has improved 12 points on this scale (which has a name, I just can't remember it). It is really hard to see, because one of the tests is pain and they try really hard to get him to feel it. I hate that part. He responded a little to smell (alcohol and amonia) and to sounds and to pain on his right side, but not so much on his left. He right side is definitely improving faster than his left, but the left is trying now. We noticed yesterday evening and a lot more today movement in his left arm, the tremors that he was only having on his right side are now visible on his left also and he is raising his left arm when he wants to.
In physical therapy, Mandy made foot plates (basically plater molds of the bottom of his foot) for Nathan which wasn't easy, but Aunt Sarah was here to help keep him calm which made it a lot easier! Thanks Sis! You are a great help! Tomorrow he is going to get a botox injection (yeah, I'm a little jealous about that cause I could use a little in the forehead area :) in his left heel to release the muscles in that foot because he has "drop foot" which makes his foot look like a perfect ballerina. It is really hard to get him to flex his foot to the ceiling. Then they are going to cast both of his feet for 5 days to help the muscle rest in the correct placement (not dropped). Then the casts are going to be cut in half and velcro added so we can take them on and off when needed.
The "Team" (which is his peds doctor, nurse practictioner, social worker, physical therapist, occupational therapist and speech and recreational therapist - and some other people I think) meet every week to evaluate his progress. Today they seem very hopeful that he will make a good recovery. Apparently they don't know our Nathan that well, cause I know he's going to make a FULL recovery! I know that cause with all of your prayers how could he not!
Well, I'm about to fall over with exhaustion (I stayed in Nathan's room last night - noticed I wrote stayed, not slept, cause there was not much sleeping going on in there) so I'm off to my own room tonight for 8 hours of sleep! Maybe someone should start praying that Nathan starts sleeping for a few hours at a time instead of 20 minutes; before his parents become zombees!!
Keep praying, He's obviously listening.
Love,
Colleen
Sunday, April 25, 2004 6:28 PM CDT
Today was a great day. I took everyone's advise and got away for a while and had lunch and went grocery shopping with my brother Adrian. We were only gone for a few hours, but it was like I was rejuvenated and now I'm ready for what the week has in store for us all.
Nathan is definitely proving what a strong, extremely smart kid he is. Today Nana Rigo asked him to close his mouth (cause it just kind of hangs open) so she could give him a kiss; you could see he was trying, his lip was quivering, but not much happened. About 10 minutes later she looked at him again and asked if he had figured it out yet, and he took a second then closed it which made him look like he was smiling, after a minute he made a big O out of his mouth and yawned. It was so incredible to see that. He really tried hard to do it, his brain made the connection and he did what he was asked to. I'm sure these seem like such small things, but it made me cry more than the first time he said he loved me.
He starts his first day of real therapy tomorrow with three sessions. He starts with Occupational therapy, then speech and later in the day he has Physical therapy. I'm sure he'll sleep well tomorrow night!
Hope everyone had a great weekend. Keep praying while Nathan keeps improving!
Love,
Colleen
Saturday, April 24, 2004 9:19 PM CDT
Nathan had a great day today. He had a ton of visitors. He got to see his cousins Makenzie (4), Trystan(5) and Daniel(9) for the first time in almost 20 days. You could see in his face how happy he was to see them. I know it was hard for them to see Nathan in this condition, but I'm sure it makes it easier for them to understand where he is and why they can't see him all the time (we live only a block apart so we would see them a few times a week). Trystan and Makenzie were scared at first, but when we told them that it was okay to cry and it was okay not to want to see him or touch him, then in their own time they came closer. Both of them hugged him and gave him kisses. I think Makenzie is going to be one of my biggest helpers in getting Nathan better. She also promises him that she won't boss him around any more!
Today Nathan punched Papa Wilson in the nose (after being told it was okay to do it) and he spent about 30 minutes kicking Aunt Sarah, that was until we told him not to kick her anymore and he stopped. He has always been a really good listener.
Nathan got to go outside in his wheelchair today and watch the kids play in the courtyard which seemed really good for him. I'm sure the sunlight will also improve his spirits!
After all the visitors left and Nathan had a bath in the tub, we sat on the couch in the TV room and watched Trading Spaces together (yes, he loves it as much as I do). It was nice to sit and snuggle with him in what seemed like a normal setting. Just relaxing in front of the tv. When I would look down at him it was like looking at him when he was a baby, his face is so sweet and inocent and much rounder than it has been in a long time.
Tonight, when I sang him a song to help him go to sleep (it always works, even if he just fakes so I'll stop singing) he looked like he had a smile on his face for a minute then it turned back to just a straight expression. It was great to see that smile.
I know a lot of people will be going to church tomorrow, please update all of the churches that have been praying for Nathan to let them know how much we appreciate their prayers and so they can see how they are working! Please continue to pray for him.
Love,
Nathan's family
Friday, April 23, 2004 9:37 PM CDT
Today was a great day. Nathan had Occupational Therapy, Physical Therapy and Speech here to see him. He will see each of these people three times a week to start and more depending how he improves.
He has started "singing" or maybe it's crying, but it sounds like music to my ears. When your own child is talking constantly and you just wish they would be quiet, think how it feels to not hear their voice for over 2 weeks. It is amazingly quiet.
He is also moving his legs on his own he is drawing them in toward his chest. My Mom came today and he was laying on his back with his legs on a blanket roll and she was telling him to move them up and down and he was, but it started to seem like he was just being repetitious. Then she said "stop" and he did; and didn't start again until she told him to. Then they did it again; and when she said "stop" he did. Every movement feels like another miracle.
He got fitted for a wheelchair today. They had to add pads to it to make it fit. But, I think we have connections and he'll be cruising around in style soon. Scott and I took him with us to the cafateria while we had lunch and he fell asleep in the chair.
He had a very busy night and is currently sleeping like a baby right next to me. It's my turn to share his room. Scott said he was up all night last night, but hopefully he had enough activity today to help him sleep more!
I'm still working on getting photos on here - I'm getting a little closer. I'll let you know when it works!
Have a great night and kiss all of your kids for me! Keep praying for more movement, sound and swallowing!!
Love,
Colleen
Thursday, April 22, 2004 9:25 PM CDT
So, you get two updates today. Nathan is in his new home and it is very nice. We've met 3 of the nurses here so far and we like them all. Nathan is sharing his room with a little boy who was in the PICU while we were there and he gets to go home tomorrow. That gives us hope.
Nathan is sleeping soundly right now in another new bed and he looks like his old self again (with a shaved head). It brought tears to my eyes to stand in front of his bed and look at my little baby again. He just looks so peaceful and wasn't having any tremors at all.
I cannot wait for tomorrow when we get to start physical therapy - can you believe they start at 9 a.m. - when am I going to get to sleep in? Oh well, I knew there would be sacrifices when I became a Mom.
They will assess him and give him a schedule for next week. The weekends are a little less scheduled and he will have time for visitors.
Visiting hours are from 8 a.m. to 8 p.m., but they have said it is better to come in the evenings and weekends because he does have things to do during the day. Apparently the vacation of sleeping all day is over :)
Scott and I can both stay here until he is ready to go back to work, there is a unit that they don't use any more with rooms that they let families stay in, so we will take turns staying with Nathan or going to the other room. When Scott goes back to work, he will come here on the weekends so he can still have some time alone with Nathan. He will also be here on Thursdays which is his day off to help with Therapy. They take a very hand-on approach and really want the families involved. Thay did say that depends on the kids; some don't want their parents around while they are working, so we'll see how Nathan does best. I have to say, if he doesn't want us there, it will probably break my heart :( But we'll cross that bridge when we come to it.
I know something everyone has been asking is if they have any idea how long Nathan will be here so far noone is able to give us an idea. I'm sure once they assess him tomorrow, they might have a better idea and I'll pass that info on as soon as I get it.
I suppose that is all for now, I have to get up early so I better get my butt to bed!
Thanks again to everyone for all your prayers and for thinking about us.
Love
Nathan's family
oh, I guess the link I added for pictures of his head being shaved didn't work, I'll try again later!
Thursday, April 22, 2004 1:33 PM CDT
We just got word that we are moving to the Cleveland Clinic Children's Hospital for Rehabilitation. We should be going in about 2 hours. Scott and I are very excited for Nathan to start this phase of our journey! Finally being able to do something to help him is the best medicine Scott and I can get.
He had his swallowing study today. The therapist gave him banana popsicle and chocolate ice cream, but he didn't swallow any of it. But we are not discouraged, he will learn to do that again, and if not, then we will deal with a GI feeding tube.
Please keep praying for his speedy recovery! I will continue to update you all on his progress and I will be the bragging Mom everytime he moves a new body part or smiles or any accomplishment he makes! Thanks again for all of your thoughts and prayers.
Love,
Nathan's family
Wednesday, April 21, 2004 10:45 PM CDT
Today was a very quiet day. Nathan had less tremors, he seemed to relax and sleep better today than he has since he stopped being sedated. He also had a chance, with his Occupational Therapists help, to sit on the edge of his bed today. He, of course, needed help but not as much as I would have thought he would. Nathan seems to be trying to follow objects with his eyes. If you stand in his view and he catches your eye, then you move ever so slightly, you can see his eye move to find you. We are working on that by having him follow a stuffed animal. We are really looking forward to getting him to the new hospital and getting his rehab underway.
Scott and I got to tour the Rehab Hospital that he is going to be moved to. They are just waiting for approval from his insurance company then they will admit him. It seems really nice and he might have his own room. They currently have 5 patients and 6 rooms. He will have to share if they get more patients in. There is a pool, a really nice recreational room and the rehab rooms are very nice and big. There is even a place where Scott or I can stay if we both want to sleep there. Nathan can have one parent at his bed side and the other can sleep in a section of the hospital they don't use anymore. It seems like a very nice place for all of us.
I was able to add a website link for you to see the pictures of his hair cut. Check out the first few pics and you will see why he needed one! He looks great with a shaved head. I'm still waiting for all the other guys who promised to shave their heads to get going on it. Nathan's is going to grow out before they get it done. I won't name names, but you know who you are!! Check out the link at the bottom of the home page (probably this one if you are reading this tonight) it says to click here to see pics of his hair cut.
He looks even better now without the extra tubes in his nose. He is down to just one and an IV in his foot. Which is amazing from the 4 different IV's (which were pumping in as many as 12 different fluids) he had last week, central line, arterial line and tubes coming out of him from the echmo machine, ventilator and the catheter in his head. We definitely have a lot of blessing to count.
I hope you all know that your love and prayers are what are helping him to recover so quickly. I can never thank you all enough.
Please keep praying for our little miracle boy.
Love,
Nathan's family
Tuesday, April 20, 2004 2:59 PM CDT
Nathan has been kicked out of the PICU and onto a regular floor. That is good news! We were very comfortable with the care he was receiving there, but I know the nurses and doctors here will take great care of him also.
We were blessed with some of the most incredible nurses and doctors this past 2 weeks. Thank you so much to eveyone on the PICU for all of your help. Scott and I are eternally grateful to you all for saving our little boy's life. Katie, Kathy, Deb, Shelley, Ruthie, Jodi, Stephanie, Kristen, Adam, Barb, Lori and Deena you are all amazing at your job and we know our little guy would not be doing as well as he is without you. To all of the Doctors who answered our questions (we know there were a ton of them) so patiently over and over again we thank you. You have helped us to learn so much about his condition and we know it will help in his long term care.
We are just waiting until he can get a bed at the Rehab Hospital. Word is that he may move there as soon as Thursday. Scott and I are trying to get a tour of it sometime tomorrow to see what is in store for us there. I've heard wonderful things about there care, but would love to hear if anyone knows of any place better! We are always looking for what is the very best for Nathan.
They are supposed to do the swallowing study tomorrow also to see whether or not he's going to need a GI tube.
Thanks again to everyone for your prayers and please continue as he makes more of an adjustment out of the PICU.
Love,
Colleen
p.s. Check out the introduction (at the top of this page, under his photo), I've added information about a steak fry benefit for Nathan.
Monday, April 19, 2004 7:34 PM CDT
Today has not been such a busy day. Nathan had his Arterial Line removed today. He only has one IV which has his morphine in it. That is set to be removed tomorrow. He had water added to his diet along with that his pediasure was changed to the kind with added fiber.
There has been more talk about a GI tube being put in, but we are going to try everything so that doesn't have to happen just yet. The doctors have ordered a swallowing study to determine what the chances are that he will be able to eat once the feeding tube that is in his nose is removed. The doctor I talked to today seemed to want to hurry and put the new tube in before he could go to the Therapy hospital. But we saw a booklet from the Therapy hospital and kids in the promotional materials have nose feeding tubes in. If he needs a GI tube put in his groin, that is what we will do, but I want to make sure we don't do it if we don't have to.
I was able to crawl in bed with Nathan today and we took a nice nap. He didn't shake for about 20 minutes. Then he started to again and I was a little sad until I realized (smelled) why - guess the fiber has been working!
Our nurse (Deb) told me I could sleep with him tonight. I haven't told Scott yet, I know I'm going to have to fight him for the first night. We'll have to draw straws! Wish me luck!!
That is all for today! Thanks again to everyone for visiting. Nathan's site has been visited over 700 times in just 4 days. If you are getting online that much, I can just imagine how many prayers God is getting for him! I know Nathan's smile will be thanks enough for everyone. I promise to get that on film and on the website as soon as it happens! I'm still trying to get the haircut pictures online, but it's not as easy as I thought. I'll keep working on it!
Keep checking the photo album, I'm going to change the pictures about every day. I can only put 3 on at a time, plus the one on the homepage.
Love,
Colleen
Sunday, April 18, 2004 10:08 PM CDT
Today has been a very busy day. Sorry I haven't updated until now, but this is really the first chance I've gotten.
Nathan got taken off the ventilator today. He seems to be doing well. We are praying that he is swallowing properly and his secretion is going down the right tube. If he is not then it will go into his lungs and he will have to have a trach put in. It could be a temporary thing, but it would be one more thing he has to go through before he can get to therapy.
He also got his head shaved today. Our nurse Jodi did it for him. She did a great job and he looks beautiful. I'm going to add the pictures when I get them. It takes some getting used to, but he has a great looking head under all that hair! Now it's his Dad's turn!!
Nathan has started to have more tremors than yesterday. He is not responding to pain as he was before. Some of the nurses have said he could be going through withdrawl from all of the drugs he's been on for the last week. One of his doctors said they could get worse and that is why we want him to get to therapy as soon as possible. It could be as early as this week that they will send him to the therapy hospital. We don't know where it is or when he'll have to be there, but we will find that out tomorrow.
Thank you to everyone who has signed his guest book. I know this is going to mean so much to him when he's older and he sees all of the people who are praying for him. We appreciate it and need it as much now as ever. Thanks again. I'll update again tomorrow.
Love,
Colleen
Saturday, April 17, 2004 11:56 AM CDT
Nathan has had quite a bit of excitement today. They removed his Central Line and Catheter (which Scott had to leave the room for - wuss).
He had another EEG which showed no seizure activity. Nathan has been having "spells" where he bites on his vent tube and shakes. Some of the nurses were concerned that they might be seizures, but he had one while the EEG was connected and it did NOT read as a seizure.
We are trying to find out if the doctors will let us shave his head cause it's getting to be hair cut time, plus he looks like an old "geezer" where they shaved him for the "bolt" in his brain. Scott says he'll shave his head too, so you all have to egg him on!
He still has mild temperatures which they are treating with good old tylenol.
His ventilator has been basically turned off - he is breathing on his own, but they are doing C-pap trials which means they are just pushing in a little pressure and he is tolerating breating completely on his own.
Just got word on his haircut, it's not going to happen today, but maybe after the vent is removed!
Time to give the baby a bath.
Hope everyone has a great day and keep praying
Love
Nathan's Family
Friday, April 16, 2004 12:30 AM CDT
I was planning to give you information about the previous days, but I will just give you a summary of everything that has happened and just update each day what is new.
Nathan bumped his head on Wednesday, April 7, 2004. Later when Mark went to get him up from his nap he found him in his bed with vomit all over him and was unresponsive and apparently having a seizure. Scott arrived to pick him up a few minutes after Mark found him and the two of them rushed Nathan to the hospital.
When he arrived they did a cat scan and found he had a bleed on his brain. He was life flighted to the Cleveland Clinic. After a lot of waiting he had another CT done and found the bleed on his brain to be worse than originally anticipated. His blood pressure started dropping and he was put on a lot of blood pressure medicine. They started to ween him off of some of it through the night. Neurosurgery put a "bolt" on his head that could measure the amount of pressure on his brain.
At 8:20 a.m. he went into cardiac arrest. He had to have chest compressions 3 times on Thursday. They immediately decided to put him on a machine called ECHMO which takes his blood out and pumps it into a huge machine that acts like his heart and gives his heart a chance to rest. He stayed on that machine until Easter Sunday when they decided his heart had healed nicely and they could remove it.
He did great when he was taken off and the cardiologists think he's out of the woods as far as his heart is concerned. He was then able to go for another CT on Sunday night. They found a series of strokes (caused by a lack of oxygen while he was having seizures or when they had to do compressions for his heart)on his Cat Scan that can possibly cause brain damage. They found more pressure in his brain and wanted to remove the "bolt" so they did a procedure on Sunday night and added a catheter to his brain that could both measure the amount of cerebral spinal fluid and drain any excess. This was done very easily (easier than they expected) and he was sleeping well on Sunday night. His neurological exams had started to become less hopeful through the weekend and he had less movement which they said could be caused by the level of paralitic drugs and sedatives he'd been on. We felt blessed to have so many Easter miracles.
Monday he went for an MRI, MRA and MRV. We received the results Monday evening. Nathan has extensive brain damage that is general in his entire brain. There is no single area of the brain that was affected. The only positive news they had was that his brain stem was not affected. The brain stem affects your ability to breath, heart to pump and the most important functions. They told us that they would not do anything differently than they had been doing. They continued to drain the spinal fluid and monitor his EEG and watch his blood pressure and heart rate. They told us the damage could get worse and they would not notice. Needless to say, after having a miracle-filed day on Sunday, Monday was a little dissapointing. We have some new things to get used to.
Tuesday and Wednesday were basically the same with minimal movement, but his neurological exams seemed to get a little better. He moved a little more each day. Scott and I started to exercise his muscles and he saw a physical and occupational therapist. The days seem to run into eachother.
Yesterday, however, was a great day. He got a new air mattress for his bed and when we were moving him from the old to the new Nathan opened his eyes. He looked a little scared and only kept them for a few moments, but it was almost as great as the day he was born. Today we are watching to see if he is going to need a tracheotomy and/or a feeding tube. If he does not support his airway once the resperator is removed they will have to do that. But, we will cross that bridge when we come to it. He had a CT today and the results were the same as the last one (so nothing has changed neurologically - which is great because it means he hasn't gotten worse). He also got a new feeding tube that is going directly into his intestine and he pooped today! It's amazing how you get so excited about the littlest things after something like this happens. Thanks again for all of your prayers and I will update you all tomorrow. Don't forget to sign the guest book so we will know who has been here!
Colleen
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