Recent updates...
7-10-08
I know it has been a while since my last update but once you read the updates you will understand why *smile*
Darian:
Darian is still doing great he has been so active this summer..swimming jumping on the trampoline, reading, playing video games and all the other fun stuff kids get to do during summer break. He will be in 8th grade next year and I am so proud of him he made the honor role every semester last year!! He has a brain like his dad.....good thing *smile*
Seth:
Seth has had a rough year. With the exception the last 8 weeks, Seth has had to have shunt revisions/replacements every 3 weeks for about 8 months, he is a tough kid and has made it all through very well. The docs finally decided to do something almost unheard of and certainly doesn't get done very often...place a Lumbo-gallbladder shunt. Basically this means that his extra brain fluid drains into his gallbladder instead of his tummy area. and *knock on wood* it seems to be what he needed because he looks great and has not had a headache in weeks. He has been though so much and I thank God that everyday for Seth feeling good and looking great!!! God is great. Today is a very happy day for all of us because it is the second day in a row that Seth has worn big boy underware and not had an accident!!! So we took him to the store and let him pick out his favorite underware, he picked dragons LOL. He is so proud of himself for pottying in the potty chair, it almost brings tears to my eyes. We never thought this day would come and even though we know it won't last, it is still so wonderful to be able to see him proud of himself and not wearing a brief.
More exciting news about Seth....we now are doing ERT infusions at home!!! Seth was the very first hunters child to receive home infusions!!!!! Things are going great with it and Seth couldn't be happier, he gets to stay home and play all HIS games and relax with his blanket and pillow. Our living room officially looks like a hospital room but that's okay with me since that means we can all relax in our own home instead of being stuck in that stuffy old hospital for hours and hours every week.
Kent:
Kent is a booger, Kent is 5 but I am still hoping for the day that the terrible 2s will go away LOL. He is very active and has picked up a bit of Seth's meanness. Kent will be in Kindergarten next year and I am so excited to see my baby join the big boys! and he is excited as well. He was in preschool last year and did such a great job, he is so smart, just like his brothers.
The Whole Family:
Needless to say with all the surgeries, home infusions, etc.. we have been swamped and have not had time to much of anything. We have been using the time we do get, to update our home and make changes outside to our property. Our beagle, Laynie, got lost right before Thanksgiving 2007 and a month ago we decide to get another one....her name is pickles. The kids love her so much. Corey and I find ourselves calling her laynie quite a bit :(. We recently purchased a wood chipper so I am very excited to start making mulch for the kids play area outside. We have had several storms the past year that had caused a lot of damage on our property (luckily only tree damage) so I have lots to chop up!
3-17-07
Darian:
Darian is doing pretty good. He was just dx with JA (Juvenile Arthritis) He was put on pain meds..they didn't help much so he was switched to another kind of pain med and is going to be starting Physical therapy soon. He is still doing great in school and loves to read. He went on his ski trip and had a good time, he said it was the hardest thing he has ever had to do and that he never wants to do it again LOL. Corey went with him and they had a great time together.
Seth:
Seth has Started Enzyme Replacement Therapy!!!!!!! Yep it is finally available for KS and MO. Seth had his first infusion on March 12, 2007. here are the pics. The first infusion of Elaprase (ERT) went great! he had no reactions and was a pretty big boy dealing with the IV and all the monitors on him the whole time. He mostly played video games all throughout...there was a small break for eating but then right back to games! I say whatever keeps him happy! He will be getting infusions every Monday and they are only supposed to last 3 and a half hours. It was alittle longer the first time but there are still some "bugs" that need to be worked out. I am sure we will get a groove going in the next couple of weeks.
Kent:
Not much new going on with Kent, he is still a crazy boy. He is starting to speak very good sentences but still no interest in going potty in the potty chair at all. I do not know what to do about that, I guess he just isn't ready yet.
The Whole Family:
We have had a full month not only with Seth starting ERT but we finally closed on the house (YEA!) and have already started digging up the ugly bushes and cleaning out the soil getting it ready for flowers. We also got a new puppy....ahhh what were we thinking??? LOL. The kids LOVE her and Laynie (our beagle) loves her also and Tigger (our cat) really could care less and acts like he wishes both dogs would run away. We got Pugly (the new puppy) last night and the kids can't leave her alone, they are so excited. I had forgotten how much work it is to potty train a puppy and all the nightmares of chewed up shoes and toys have been rushing back to me. My brother's dog had a litter and my sneaky brother brought the 2 puppies he had left to give away to my sisters house where he knew we were coming to visit. And who can say no to the faces of 3 little boys and a sad lonely puppy needing a home?? well not us because now pugly is here and is getting into everything in my house....toilet paper, shoe strings, toys etc... But all in all she is a very cute puppy.
2-04-07
Darian:
Darian is now in Jr High...WHAT??? when did he get so big??? Gosh how time flies. He is doing good in school and is even on the honor roll :). He was recently dx with arthritis we see the rheumatologist in a couple of weeks to see what they recommend. He was started on pain meds and at first they seemed to help but lately they haven't been, maybe he needs a stronger type. He also volunteered to work the concession stand at a school basketball game last week and when we asked if he liked it he said "it was okay". I know that doesn't sound like he was excited but for Darian that meant he didn't hate it and that's good enough for us :). He also is going on a Ski trip this month and he isn't as scared and upset about it as I thought he would be so again, for Darian that's good! Corey will be going with him and Darian is very happy about that. Darian's bunny, Carol Bunny, has died :(. we were all sad and we buried her in our back yard. The kids each had a big rock that they decorated for her as tomb stones. after several months we ended up getting two more bunnies...Basil and Dilla. They are sweet bunnies and the kids love them. Laynie (our beagle) has finally stopped trying to knock their cage over to eat them. She is such a good wild bunny hunter and we never thought she would give up on trying to get the two we have caged. Darian has done a really great job making sure they are feed and have water and he thinks of them as his bunnies. We still have pictures of Carol bunny all over so that we never forget what she looked like. Seth said "Carol bunny with Grandma now in the sky" yep he is right they are both up there having a great time watching the kids grow up!
Seth:
Well Seth.... Well he has had a rough time for awhile. He has had 8 shunt replacements since Aug 2006 and 2 of which resulted in Bacterial meningitis. He is such a trooper though! The last one was in December 2006 so we are hoping/praying that this one stays working for a looong time. He has been having numerous headaches which are appearing t be more like migraines...he gets severe headaches, then light sensitivity and then tired all lasts about an hour of two then he is better. Only twice over the past couple of weeks has he had any nausea with it. He is doing pretty good in school considering all the time he has been out for surgery. Seth was invited to make and show some of his art at an art show at one of the local art galleries here in town. The showing was last night and he was loving it! He kept asking "when people ask me questions" LOL His Para from his previous school was the one who called and asked if he wanted to do some art for the art show. I knew he meant a lot to her and I knew that she loved him but after talking to her last night I realized just how much Seth has touched her life and helped her make her life decisions. He certainly makes an impact on everyone he meets. I was so glad to hear her say how much he has taught her because sometimes I question what the meaning of his life is, it warmed my heart immensely to learn how much my sweet son has marked someone's life, someone other than us as family members. Bryn (his old Para) is such a sweet young girl and her and her boyfriend (he is an artist also and was the center of the art show) seems to also be a wonderful caring guy and they appear to be a great couple. Here are some of Seth's featured pieces of artwork at the gallery and then some extra pics taken last night at the show.
Kent:
Kent is doing good. He loves daycare and is getting so big it kills me. He will be going to preschool next year and so far he knows all but a couple of his colors, most of his numbers to 10 and is working really hard on learning his ABC's. He and Seth have become best of buddies they mimic each other all the time. Kent has mastered the temper tantrum and I swear one day he is going to throw himself on the floor and split his head open. He tried so hard to be like Darian and it is so precious to see them all three playing and using their imaginations, It usually ends up with Darian telling Seth and Kent what to do and when to do it but usually they don't seem to mind to much LOL.
The whole family:
I am sorry it has been so long since I have last updated. There has been so much going on around here. Since Aug 2006 Seth has had 8 shunt surgeries 2 of which he ended up with Bacterial meningitis :(. I started working at a place called Families Together which I love. It is a parent training organization. We train parents (biological, foster and adoptive parents as well as volunteers) to be advocates for their special needs kids. I am a co coordinator for the education advocate program part of the office. I set up education advocate trainings, match education advocates with kids who need one (and who do not have biological parents available to them), I also take parent assist calls where I help Biological parents and education advocates with school issues, I help them with learning the special education laws and inform them of their rights if the schools are not doing what they need to do with their special needs children. I love it! I have had so much experience with Seth and school and it makes me feel really good that I can now use that experience to help other parents and caregivers. I also love it because I am also learning more about the laws and regulations around special education. It is a great job and the education advocate part is only one of many types of parent assistance that we offer and we cover all of Kansas :). It was a big transition for me since it meant that Kent had to go to daycare for the first time. He really has done well with it and likes going. We found a great daycare provider that also watches my niece, Kasey. Corey is also doing good he has taken on more responsibility at work since his boss was fired so now we just wait and hope that more money comes along with it. We are also gearing up for this years Crazy Dress Day "come out of your shell for MPS/ML" at the kids school. I am still trying to find all the little goodies for the goodie bags and I am really hopping to be able to find a printing press that will donate shirts again this year.
3-28-06:
Darian:
Darian is doing great. He likes the new school and is adjusting fine. He is doing good in school, and will soon be getting an IEP so that he can get some extra help with his writing. I am so proud of him, he chose to do a "distinguished desktop" for a school assignment on Martin Luther King Jr. He has worked so hard on learning ALL about MLK Jr. He is so smart and is so good at learning about history. He is almost done and has figured out that he has so many things he wants to put on his project that he has to narrow it down! He is getting very creative with this project, it is nice to see him have passion for his school work.
Seth:
Seth is almost 7!!!!!! Time is going so fast. We got Seth's progress report and he is doing so well in school. He is on his way to meeting his annual goals (annual goals end in Oct 2006). And with the counting goal....he has already passed his annual goal!!! He can count to 100 by 2's, 5's, and 10's. Take THAT doctors HA! :). He can also now read about 60 sight words!!!! It is great that he is doing so well with counting and sight words, but it makes it harder to remember that most of his brain is still functioning at a 4yr old level it is very hard to make the school understand that. Seth loved helping us with crazy dress day (click here for pics) he LOVED being the center of attention...especially when the girls were talking to him LOL. He is still having headaches and we are not sure why. His doctor wants to put him on a med (Topomax) but it isn't approved for kids yet and it has so many side effects that poor Seth already deals with on a daily basis, we can't risk those getting worse. For now, he will just take his Ibuprofen. If the headaches get to the point that they bother him so bad that they don't get better by resting, then we will reconsider the Topomax. We are planning on going to St. Louis to the MPS II family gathering on April 8th and Seth is very excited because he wants to see Kraig (another MPS II boy)!!!!!! He likes to look at the pics of other MPS kids. I have an MPS poster on my living room wall and Seth is always looking at the kids and asking me to tell them who they are, how old, and "whats in their body" (meaning what type of MPS) LOL. Seth has found a new fascination with Care bear movies and the Mr. Potato head computer game. He would watch them forever and play that game all night long if we would let him!
Kent:
Kent is just as silly as ever. He LOVES the new "surprise" (outside play yard). It is completely adorable to hear him say "surprise, mom, out, me?" He is learning new words and likes to say "2,1, bear bear tare" (3,2,1 Care Bear stare). funny story time...... a few weeks ago Corey and I were watching "War of the worlds" while Kent was playing in his room. Kent came out just in time to see a car fly in the air, and to see the "robots" walking around. He ask "happen?" We said "the robots crashed that car but don't worry the good guys will fix it". Well now Kents favorite thing to ask is "bobots (robots), cash (crash), cas (cars)....good guys, fix?" LOL He has asked to watch it but I always say no!
The whole family:
Wow so much has happened since December. We found out that our perfect house has some not-so perfect traits :(. While going though the zoning process of buying a house, we found out that the previous owner was wrong...we only have 2 acres :( I really wanted to get a horse for me and the kids but we have to have 3 acres or more to be able to board a horse, that just SUCKS! Since we had already moved in, we decided to stay instead of putting the kids through another move. any way, we also found out that all of the people who were assuring us that this new house is in the same school district as before....well, they were wrong! The kids switched schools and I was so worried that they would not handle another big change so soon after moving, but they both did great. I swear we will NEVER buy a house "by owner" ever again! We only did it this way this time because the previous owner didn't want to pay the realtor fee's....Next time we will happily pay the realtor fees!! The new school is a K-12 building (very small district!) and that will help Darian when the time comes for him to move to Jr.high because he will not have to change buildings, he can still be in the same building as Seth. The school officials were awesome enough to let us put together a Crazy dress day "Come out of your shell for MPS/ML" event on Feb 24th for MPS awareness day. The event went so well, I was so proud that all that hard work actually seemed to work out and spread awareness of MPS/ML disorders. Click here to check it out. Corey and I also did a speech on MPS/ML disorders and living day to day with a child with special needs for another local 11th grade class. I have decided after the crazy dress day event and the speech, that this is what I do best and what I want to do more often. Advocating is also a passion for me, I have learned sooo much from the past 7 yrs with Seth and I feel like I have a lot of things I can share to help other families. Someday maybe I will find a job where I get to plan events, promote awareness, teach advocating, and help other parents with special needs kids. There has to be a job out there with those aspects (and others of coarse!!). We are also putting together a family gathering in June (maybe July) for the upcoming ERT. It will be great to see other MPS families and to learn more about ERT. We want to get the ERT ASAP, it is so hard to be patient for something as important as ERT might be to our MPS II kiddos.
12-11-05:
Darian:
Darian is doing very good in school. He likes his teachers this year and I can see him growing more independent. I am so proud of him. He is also very excited about this new house. We now have a small "hill" in the side of our yard that is great for sledding or just rolling down!! he has done those things several times already and we have only been here 2 weeks!!
Seth:
Seth is also doing VERY well in school. He was just evaluated and he now knows 16 sight words!!! that is 6 more than just a few months ago!!! I am so excited about this and I have to hold back tears when he and I sit down to read a book because he is able to actually read some words! He is also very good at counting and he can count by 10's all the way to 100!! He is showing progress with counting by 5's and can almost do it without error all the way up to 100! I am also so proud of him. We have a great academic team this year. I keep hearing the words the doctors have been telling us for the past 2 yrs "IF he learns to read, speak or count...he will not do it for long" I pray everyday that they are wrong, we will just keep him practicing and enjoy the time we have to hear him do all those things. who knows, maybe he will prove those doctors wrong!!! Now that the Hydrocephalus is under control and that he has been on Genistien, maybe his fate is not as bad as the doctors predict?? We can always hope and pray. I am just focusing on loving all three of my kids every second of the day so that I do not miss anything! I am praying that ERT will be ready soon for Seth, I hear sometime early 2006. Please keep your fingers crossed for a quick delivery of ERT!! The FDA has the results of the trials, and now we wait for their decision.
Kent:
Kent is doing good also. He had an allergic reaction to a new fabric softener and has been very cranky the past day or so. He fell a couple of months ago and cracked 3 teeth and completely broke one more. He had surgery to correct all broken teeth and they finished cleaning out the spot where the broken tooth was. He is eating much better since they were fixed! He is talking more and will sometimes say 3 word "sentences". His talking is still pretty choppy and his pediatrician says to get him involved with speech therapy. I think we may wait and see if we will get better results by applying more of the speech therapy we learned with Seth on to Kent. Kent's favorite things now are Scooby Doo or as he says "bobby-bo" LOL, beyblade or "bey bey", and pokemon (pickachu) or "pita". He has a great amount of patience...for movies that is LOL. and he will sit and watch 45 minutes of Scooby Doo without him making major interruptions. He is growing so fast and trying to be and do just like bubbas!
The whole family:
We moved to a new house 2 weeks ago. I know, we just moved 5 months ago but this move was unavoidable. This time we are buying the house and we all love it. It is 3 bed 2 bath on 5 acres with a 3 car garage and a full unfinished basement (I can't wait to make something cool out of the basement!). We are a bit further from town so no more running to the store for milk LOL. Poor Corey has already had to go to the store after work before he comes home a million times! The kids seem to really like it here. When we made our "perfect house list" before we started looking for a house, one of the things Darian put on the list was a bar...yes a bar BUT not for what you think!! LOL he wanted some place he could play with his toys where Seth and Kent couldn't get a hold of them or bother him. We looked at a lot of houses and none of them had anything remotely close to the kind of bar Darian wanted...except this one :). This house has a wet bar complete with the serving window with shutters and doors that close. Darian is so excited to finally find a house that has a bar LOL. Kids want the strangest things LOL. It also has the kind of over that is built into the wall and a stove top built in the countertop...the kids think those are so cool!!
8-2-05:
Darian:
Darian loves the new house. It is much bigger than we had before. He is very excited to be in the country and "more in tune with nature". He is not excited about school starting in 15 days. Darian was such a big help while we were moving. He watched Kent, helped carry boxes and helped put this away. He is such a great kid!
Seth:
Seth is walking much better now and has only had a few days of having actual trouble walking. He has gotten his crutches and in the beginning loved them, he is getting tired of using them so I have not had him use them at home since there is plenty of places for him to rest if needed. He does use them when we go out, but he isn't liking it as much as he did. He is always making comments like "why that kid looking at me". t is heartbreaking but he has to get used to using them because he will need to use them all day everyday when school starts. His wheelchair is still not here but should be here sometime this week. Seth loves the new house!
Kent:
Kent loves to play outside here at the new house, he likes to "pull weeds". Really he is just moving dirt around but he likes it!!! He loves to open and close the sliding glass door and the screen door, he thinks he is such a big kid. I can't wait until the lawn is done and we can all run around outside. Right now it is horrible, the grass hasn't been mowed in months and our poor little push mower will be getting a new blade tonight so we (well Corey :) ) can finish up mowing. There is still so much about the land that we haven't gotten to check out and as soon as the weather gets a little cooler we are gonna all go down to the pond and see what kind of shape it is in and if it needs to be stocked.
7-18-05:
Darian:
Darian is still doing good. We have had a lot of changes these past few weeks, but he is handling them very well. He is very excited about the move to the new house. He is especially excited about having a basement again and have a house out in the country where he can play outside and have lots of room to run around.
Seth:
Seth is having a harder time walking and last week he lost the use of his left leg due to a pain problem. We have increased his pain medication and that has helped tremendously and he is able to bear weight on his leg now and he can walk again without holding onto anything! We had a pediatric Physical therapist evaluate him and him recommendations are for a wheelchair (to rest his hips) and forearm crutches to reduce the amount of weight put on the left hip, and to assist him in walking better and longer. I am concerned about school, here at home he has the couch and beds that he can rest on but at school there is nothing like that, so his wheelchair will be with him always at school so he can use it wherever he is. We are supposed to get the new wheelchair sometime this week and we pick up the crutches tonight.......THANK YOU TO THE SHRINERS!!!!!. But just like all of the other hurdles....we will all adapt and get used to the change. We have started a new supplement called Genistien, it is a soy extract and has been proven in Poland (in mice and petrey(sp) dishes) to pass the blood brain barrier and break down some of the build up of the MPS. I am so excited by this thought because even the ERT that will be available for a treatment soon does not even pass the blood brain barrier. Seth has been on the Genistien for 11 days and we have noticed a decrease in his snoring, and better behaviors. We saw a new neurologist last Monday and Seth was diagnosed with LOW intracranial pressure. So we lowered his Diamox dosage and he hasn't had a headache since and has been much happier.
Kent:
Kent is getting to be quite the big boy. He is no saying "no" and riding the scooter like his big brother. He is getting such an attitude and he is very bullheaded. He is a dare devil that's for sure...jumping off the couch, running as fast as he can and "sliding" on the floor. He has entered the terrible twos and is getting the temper tantrums down pat that's for sure!!! He likes to give "huggies" (hugs) and "tiss" (kiss) he is just so darn cute. His new favorite word is "happen" which means "what happened?" and he asks "happen?" all the time, even when nothing is happening :). He is so in love with cars and he has SEVERAL that he insists sleep with him at naptime and at night time.
6-1-05:
Darian:
Darian is doing good, he has done a great job taking care of his bunny. He will be in 5th grade next year and it just doesn't seem like he should be that old already LOL. He is such a mature 10 (almost 11) yr old I think I have ever seen. He has had an emotional time with Seth lately, I only wish I could make it all better so that he could be a normal big brother to a normal little brother.
Seth:
Seth has just completed his every 3 months visits with Ophthalmology, orthopedics, Genetics, ENT, and Neurology. All the doctors said Seth has more neurological damage, neuromuscular dystrophy, increased joint stiffness, and decreased ROM than the last time they saw him. I guess it wasn't really shocking news for us because we have been watching the changes everyday. Seth developed Anisocoria (unequal pupils) about 3 months ago and neurology, Ophthalmology and Genetics all agreed it is from the increase in neurological damage that Seth has had the past few months. Seth's hearing loss has also increased to profound on the right and severe on the left side. He got new high digital hearing aids that seem to help him with the low frequencies and bring him to a borderline mild/moderate loss and helps him hear at a moderate level for the high frequencies. We have had to increase Seth's pain medicine dose and will be putting him on a dietary supplement to see if we can gain more muscle mass back. His left femoral head has flattened out but his femur is still in the joint somehow :). He is still walking and talking and I am thankful for that! His attitude continues to be a challenge, but we are not ready to put him on any behavior meds yet. And lastly he will be having another sleep study soon because his BiPAP no longer seems to be helping him breathe at night, he is snoring and breathing very loudly with it on.
Seth is going to 1st grade next year!! he is excited and asks everyday " we have school now". His smile still makes me smile no matter how sad or depressed I get.
Kent:
Kent is a normal 2 yr old trouble making little brother LOL. He is talking more and repeating everything the big brothers say (the good AND the bad things). He is now trying to master riding a scooter like his big brothers (lots of ouchies have been happening). He climbs like a monkey and eats like a bird, and now tries to drink things by licking them like the cat LOL. He is so full of life it wears me out LOL.
3-30-05:
Darian:
Darian has a new bunny!!!! he is very excited and named her 'Carol bunny' after my mom who passed away November 6 2004. He is such a sweet kid and is missing Grandma Carol so much lately. Here is his a pic of Carol bunny
Seth:
Seth had another Lumbar puncture on the 14th of March to check his shunt. He has been very violent and aggressive for the past few months so we suspected his shunt (again). The good news in this case is also the bad news :(..his shunt is working properly and actually it is working better than I have ever seen it so that leaves us with progression of his MPS. I wish it could be something we could fix. Seth is also getting new hearing aides next month so maybe he won't be so loud.
We had an IEP meeting at Seth's school on Monday to make sure Seth gets everything he needs added to his IEP. It was a very long, frustrating meeting but after an hour and a half we finally got what we wanted..PT, OT, Adaptive PE, and a Para just for Seth (YEAH!!). We got all of it added but only for consultation. That is a big step because they wouldn't even 'allow' us to add that stuff before, I guess being persistent really does pay off.
Seth's 6th birthday is April 3 and we have been racking our brains trying to figure out what to do for him. Well, we finally came up with McDonalds here is the invitation he helped me make.
Kent:
Kent is still fighting an ear infection but he is trying to say more words. He is getting cuter and cuter everyday!!!! During the egg hunt and the coloring of the eggs, he was to busy trying to eat them (shell and all!!) than actually looking for more.
2-12-05:
Seth:
I am sorry I have not updated in, well, forever but here is an update. Seth is having a horrible time with his shunts (yes he now has 2 an LP shunt and a VP shunt). We started a medication called Diamox instead of putting him through another surgery. Well it is not working well. He is having breathing problems, cognitive problems, eating problems, drooling, headaches, and having a hard time talking. He has had several shunt revisions since July. His hearing loss is now at severe. His hips are worse especially his left side, He has about 10% of his left hip ball joint left. Monday we go in to have an ECHO and a bone scan done. Since the Diamox is not helping his Hydrocephalus then he will be going in for another LP and possible revision early next week. He has missed a lot of school and he misses his teacher and friends. He spends most of his time coloring or laying on the couch playing Playstation 2. The good news is that Seth can now spell and write his name!!!!! Seth got a wish granted from Make A Wish and his wish was to "meet other kids with hunters in their bodies" :) well actually his first wish was to live with Kraig!!!! but Seth got his second wish ...We went to the MPS conference in December at Disney world!!! Seth got to meet new friends and he absolutely LOVED to see Kraiggy again. We did have a little fun visiting the theme parks but it was not as cool as we thought it would be. Seth got to meet the Incredibles and even got their autographs. He fell in love with a girl named Calla, she is the aunt of Zachie (an ML 4 yr old) I bet Seth would have went home with Calla if we would have let him!!!! Check out the pics of Calla and Seth .
