It's been a while

I haven't blogged, for a very long time. So here goes a little update on Easton and everyone else in the Thomas clan.  Easton's surgery went well his carpal tunnel Dr. decided to try something new before surgery.  He used ultra sound to see if they could see the inflammation and build up around the median nerve.  The ultra sound was successful they were able to take measurements and see that the build up along the nerve .  They also took an ultra sound a couple of weeks after surgery and it showed that inflammation along the nerve was decreased. Also our family has had quite the changes going on. I started nursing school and this may have added to the lengthy time between posts.  I now have only 2 semesters left and if I pass my state boards I'll be an RN. We also started doing foster care.  WE originally just took in a newborn that was born with drugs in his system.  About 2 months later we also took in a brother and sister group.  Now we have a 1 yr old, a 6 yr old, and a 7, year old  they have all come up for adoption so in about 2 months we wil adopt all three. I should mention that there are 2 boys and 1 girl.  They have been really good kids and have fit in well with our family.  Easton has loved having younger siblings and having them so close in age.  The 7 yr old is a boy and his name is Christian  they  play really well together. I have loved watching them. Don't get me wrong they have had their problems and do fight, plus these kids are trying to overcome their past.  It has also been a little hard at times watching the differences between the 2 boys Easton continues to do well and is still preforming at grade level but socially he is still behind his peers.  Having another boy so close to his age has made these subtle differences more apparent.  The 6 year old is my little girl.  She is full of life and a very girly girl.  Her name is Kendall.  She has been so much fun.  Our baby is now 1 and we named him Ryan.  Actually Easton chose his name and it fit.  As for the other kids they are also doing well Kaylee is almost 16 and is a sophomore,  She has also joined the FFA and cross country team.  Weston is in 7th grade and is right now in football.


The trial continues to go well Easton is still doing really good.  He was having issues with severe headaches after each treatment.  This were severe enough that they required staying in the hospital to receive pain meds. I kept telling the DR. that I thought the headaches weren't caused by pressure changes (we were thinking they were from low pressure) I thought that they were caused by a reaction to the medication itself.  FINALLY someone listened to me and tried pre-treating him with a steroid in conjunction to pain meds and it worked the headache was minimal.  We have since increased the amount of steroid and have pretty much eliminated his headaches totally.  He played on the city league coach pitch team.  He loves all sports.  I'm hoping that I'll be a little better at keeping things posted. Plus I will post some pictures when i get them uploaded to this computer.

YIIIPPPEEE Surgery before school

I'm posting about his surgery before it happens in hopes that I will be better about keeping up on the blog. So after finally talking one on one with the hand surgeon and him taking time to look at his hands agreed that surgery needed to be done sooner than later so we are doing it tomorrow. I am so excited for him, his hands have been really bothering him lately and within the past month he has lost a lot grip strength and his fingers have really started to curl. If its anything like Nathans surgery he felt so much better it was great I'm hoping for the same for Easton.

We also just returned from NC where we did his testing I haven't heard the results yet but I'm betting that he has improved in all areas. I will let everyone know as soon as I find out. He also received dose 31 and again he was struck with a severe headache. This time its onset was much quicker than in the past and the vomiting was a little worse. I'm hoping they can figure it out soon because these headaches are becoming unbearable for both of us. I'm thinking that we might need to go to infusions every other month or something like that. He has missed multiple doses in the past due to surgeries and recovering through all of the missed doses we never seen any decline or signs of regression. So in my professional opinion I don't think he needs it every month however I think they will find that this drug needs to be tweaked to each boys severity and how their body responds to the drug. I guess we will see what happens.

These are are newest family pics. My kids are so beautiful. I can't get over how lucky I am to be their mom. They are all such good kids to. And now I'm done with the bragging (but with these guys you can't blame me)

craziness!!!

So I will apologize from the beginning about the length of this post, as its going to be long I'm sure, but what can you expect when you haven't written a post for forever. Before I begin Easton graduated from Kindergarten and is ready to move onto first grade. There have been a lot of changes that have occurred in our family over the last little while the biggest one has been the fact that we moved. We sold our house and moved to Sp. Fork this is a little further north than I had planned but so far we have loved the area, and our views are gorgeous. The kids have all had a some what easy adjustment, Camille struggled the first few days because there aren't a lot of kids here her age and she missed her grandma and friend that live next door but on the plus side she is a lot closer to her boyfriend Jaxon which hasn't been to bad yet since I limited them to only seeing each other twice a week while schools out and between her drill and his football and baseball schedules they really don't have a lot of time for dates. Kaylee has seemed to adjust the best. One of her best friends lives less than a mile away and will go to the same Jr. High next year. She does however ask to go to her old friends quite a bit. This also hasn't been to bad for her because she will get to go to girls camp with our old ward and be with all of her friends from Genola. Weston has always had an easy time meeting new people, and friends. He met a new friend the first day we were here but is often bored and wants to go to his friends house in Genola. I'm hoping that as he starts going to scouts and stuff that he'll meet someone that he gets along with and is his same age. Easton hasn't said to much but he has been so whiny and irritable. It's been hard for him because we had to keep going to the other house to clean get odds and ends and stuff and I'm sure he was confused. He has kept asking me how he will have friends to go to his power ranger birthday party that he wants. As for me and James we've done o.k. I think James struggled the first few days we were here. He loves being in the country and having space and animals. On the other hand I didn't want so much space and was sick of having animals. I also loved my house out there and have so many memories this was the home that I have been raising my children where I've watched many joyous occasions like the birth of a new baby first mile stones. This is also where Nathan took a hammer to our brand new fridge before we had even moved in and also took a black sharpie to the freshly painted walls. This is also the home where I watched as he steadily declined, I watched as this disease took away his ability to walk,to talk and play as he always did. There are also many pleasant memories I have there of him, well all of my memories are sweet some just sting more than others like the memory of his last laugh that I was able to video tape a week before he passed away ( he hadn't laughed in ages). This is also the place where my sweet baby boy layed in my arms as I rocked him and he quietly passed away. After his passing I would often go to my kitchen or bedrrom window and I could see the cemetary that held his body and take comfort in seeing this I also put little solar lights out so I could see him at night. As we were preparing to move I knew that these memories were going to make leaving harder. I also felt that as I cleaned and moved things that I was going to find some little thing that had been lost that was Nathans. As we packed and moved I found nothing so I thought well maybe I will be able to dream of him and feel that peace that always comes from a good dream and these to never happened. So I decided that I would just have to say goodbye and move on. One of the last days I was in the house I was cleaning the drawers wiping them out and decided to take them all the way out and clean behind them, By doing this I found a hidden treasure a little token, I some how knew would be there. It was a little apron my sister had made for him on his birthday. At the time she made this he was needing something to keep his food off of his shirts and bibs were to small and just wouldn't cut it so she made him a red apron with a picture of buzz and woody on the top along with his nickname. This had been lost for years and I assumed that it had been destroyed or something I just figured it was gone. As I grabbed it from the behind the drawers I was flooded with emotions I knew at that moment that Nathan was always with me no matter where I live and that my heavenly father is always aware of my needs and loves me. That no matter what mistakes I've made I will always be blessed with his tender mercies I just have to recognize them for what they are. After finding this I looked at my empty house and for the first time since packing everything up it didn't feel like home anymore it was an empty shell and all the memories that I had are still here locked inside my mind. Now back to my crazy schedule and on to making more memories. We finished moving the last odds and ends yesterday which was a Wednesday and we are leaving on a family camp out on Monday. So now it seems like everything I just got put away I need to pull back out so we can go camping for a week. Easton is so excited he just hopes I won't forget to buy marshmallows, chocolate,and graham crackers he wants some smores so bad. I hope he's not to disappointed when we have to cook them on the camp chef since Utah has a no burn in effect due to the high fire danger right now. After we get back I have only a few days to get everyone's things washed put away, and mine and Eastons luggage packed so we can go for his 6 month evaluation at UNC for 10 days. What a hectic schedule. Now for my clinical report of Easton progress. He has been doing really good and has seemed to retain everything he had learned in school so far. I have noticed that he is forgetting some of the site words he had learned but the ones he has forgotten are the ones that they had just taught and I will chalk it up to me not helping him as much during the move. So I guess I can see what we need to start doing a little one on one reading time. His math skills are great he has always had a fascination with numbers so he is continuing to count to 100 and is constantly working on his addition and subtraction. He has had his last 4 infusions via lp and has done ok with the actual procedure. It's been the last 4 times that he has suffered from intense headaches. These usually start about 4 hours after the procedure and we are on our way home from the hospital. They started out just making him cry then he would go to bed and fine then another headache in the middle of the day but same thing he would lay down and it would go away. These have progressively gotten worse. The last infusion that was nearly a week ago his pain was so intense that he cried and moaned the entire way home, this was couple with severe nausea which he ended up throwing up in the car on the freeway while I was stuck in rush hour traffic and construction. He did really well with it I had a handle tie grocery bag in the back and he was able to get most of it in the sack. After throwing up he fell asleep and slept the rest of the way home. He did however wake up later that night with reoccurring pain and was given motrin and put back to sleep. The next day he woke up and acted fine other than he was a little bit more whiny than normal. He also had an EMG earlier in the month that showed severe carpal tunnel, and a trigger finger. I was hoping to get this surgery done before school started but the only available date they had was while I was gone back east so for now he is scheduled for Oct.3rd and we've been put on the cancellation list so hopefully somebody cancels on a day that we can get him in.

finally we get another infusion

It has been a really long time since I posted anything. So were to start, In April Easton got his hearing aids. When they put them in he was so cute. He sat there singing and we then realized that he hadn't really been able to hear himself that well let alone the rest of us. He did really well with wearing them and now will wear them all day, occasionally we have to take them out early in the day just because they are bugging him. We have noticed a few changes one, that the t.v. isn't turned up so loud, and when we tell him to whisper he actually does it! I haven't noticed a whole lot of language improvement, some but not as much as I expected. Next month he will go to the audiologist and they will turn them up a little bit more. They left them on the lowest setting so they didn't overwhelm him. I guess we will see what happens when they turn them up. Easton missed a couple of his IT doses due to the removal of his port and allowing him to heal. We finally got one though, with an lp. We along with his Dr.s have decided that he will get them via lp's indefinetly. I don't know that even if they found a new device we would opt for one his poor back is so scarred up and I honestly don't think he would heal with another surgery. Plus he is complaining off and on about his side and mostly his back hurting where the incisions are. I don't know if any other patients have had issues with pain and Easton never complained until after this last removal. During the summer we are going to have an EMG which is a nerve conduction test to test for carpal tunnel I would bet that he needs surgery to relieve his hand pain. His hands seems to bother him quite a bit, so hopefully this will help him. And then during the month of July we will go back East for another infusion and more testing. I wish they could compress the time you have to be gone, as of now its 13 days away from home. I wish they could get it down to a week. Its really hard to be away from home for this length of time. Or an even better idea would be to do the testing at our local site still going back east every 6 months but only for a few days. In early June I'm running my second half marathon which I'm really excited for. Camille made the drill team again so she is booked solid with things for basically the rest of the year. Weston is just getting over a fractured foot and will be starting baseball games soon and Easton will also be starting tee ball games next week. Kaylee is going to be doing a musical theater class this summer so we are busy busy.

surgery update

Today was Easton port removal. We arrived at the hospital at 9:30 a.m. and due to an unexpected emergency surgery poor Easton wasn't taken back until around 1 p.m. he never complained though, there were way to many new toys to play with so he was well entertained. The surgery lasted about 1 hour then he went to recovery. The crazy thing about it is that we never heard from the surgeon until he had been in recovery for 1 1/2 hours and they needed them to discharge him to the floor. The Dr. was able to tell us that they removed the port and catheter from the incision on his side but they opened up the incision on his back to see if they could see a reason that he was continuing to leak CSF. They did find that the fluid was again following the track from the catheter placement to his device. So they sewed that up again and they decided to looked as deep as the fascia (sp),and there was a hole there that they stitched shut, so hopefully this will solve all of his leaky problems. They are keeping him flat for tonight and will let him sit up tomorrow and see what happens. With any luck there will be no leaking. He is really sore and itchy again so we are keeping him on pain meds. and benadryl this combo is keeping him comfy. Now the plan for further infusions as far as I know we are going to let him heal for awhile and make sure that with activity and movement there will be no leaking or bulging. If he remains free from leaks we will start infusions by lp's indefinitely or until everyone comes up with an agreeable plan. He definitely won't be receiving another port for quite awhile. We appreciate all of your thoughts and prayers for our family we can truly feel of every ones love for us. Thank You

MORE SURGERY!!!!!:(S

Well 2 days after Easton received his infusion through the new port he started leaking CSF (cerebral spinal fluid) through his spine incision. We took him to the children's hospital where we ran a bunch of test one of them was a sedated MRI of the port and spine and all we could tell for sure was that there was a collections of fluid on the outside of his spine, near where the incision is. He had a bulge on his scar that was a pocket of fluid back in November but, it went away so we figured it was healed. We still don't know that it's not. Needless to say we took him home with an antibiotic and decided to keep him on a form of bed rest for a 6 year old so basically he sat home and watched t.v. all day. If he did this the leaking would go away. We thought that after doing this for a couple of days that what ever wasn't healing or whatever was leaking would heal and we could resume our normal activities. YEAH RIGHT as soon as he would do any type of activity he would get a bulge in his back over the incision and it would start a pretty steady stream of CSF. We would then get him back to bed and it, would subside. He can't even go to the bathroom without it flaring up. Tuesday he had an appointment with audiology to check into getting his hearing aides. The trip is about a 20 min ride each way, so not horribly long and he would be just sitting so I figured it would be fine to go to the appointment. Well on the way home he started screaming that his back hurt and by the time I pulled over to see what was going on he was leaking like a faucet with a pretty much steady stream so we hurried home got him in bed and it stopped. We took him back up to children's hospital on Wednesday for the Neurosurgeons to take a look at him and see what they thought. I knew riding in a car this long would make it really flow but to my surprise it really didn't the entire day we were there, it was bulged and his port was swollen and misshapen, so I instantly assumed it was broken again. We decided to try and access the port and take a fluid sample to test for bacteria in case there was an infection starting. All of these test came back free of infection plus the port worked really well so it definitely wasn't broken. All I could figure is that the fluid is building up along his spine then tracking to the port site causing it to become filled with fluid and look misshapen due to the build up of the fluid. The Dr.s put some Dura bond (super glue) on both incision to try and seal them and prevent further leakage. This worked until Thursday night when he couldn't take laying in bed watching t.v. anymore and I let him walk next door well an hour later he was back to leaking. I called the Dr. in the morning and I guess that the neurosurgeons and other Dr.s over the study, talked and decided that the port isn't broke but needs to come out because due to the levels of glucose and protein in CSF his incisions will never heal and the leaking will never stop then it will only be a matter of time before he has an infection which would most likely be meningitis. So Monday morning the device will again be removed. With the port out, he will probably have to wait a couple of months to heal before they will do another infusion and after that his infusions will be done via Lumbar Puncture. Its so hard to see or have a drug that is working and helping your son live a more normal healthier life and now he is going to have to go without it for awhile I just pray they find a different device during this time that will work and not have problems. I am so tired of things right now. I wonder to myself if it's even worth it anymore. How much can we take. I just want him to be able to play and be happy. Plus we are having to sale our home in the middle of all of this. I just wish we could get a break even if its for just a second. Hopefully I'm learning what I'm supposed to from all of these trials.

Oh and he picked his own hearing aids out with dad today he chose brown for the inside and a lovely giraffe print for the outside. It will be exciting to see how they look and more exciting to see how he does with them!!!

update on the infusion

It went fine everything was great the PORT worked awesome, and they were finally able to get and ABR done. I'm thinking James should go all the time things go smoothly when he's there. As for the ABR result not so good they pretty much confirmed what we have been thinking. That there has been some hearing loss. He isn't able to hear most high pitched noises and a lot of the sounds that he doesn't say or letters he's in speech for, are usually said at these decibels so that in theory explains a lot of his speech problems. Now the next step, the Dr. wants us to see an audiologist in a sound booth like 4 times in one week ( like I wasn't busy enough) then we can move forward with fitting him for hearing aids. I'm kind of excited for him to get them because I look at how far he's come since being in the trial, what will hearing properly do? I'm betting it will make things a lot clearer for the both of us!!!!

ADOPTION MY YOUNGER SISTER KRISTA AND HER HUSBAND HAVE BEEN MARRIED FOR 10 YEARS AND AREN'T ABLE TO HAVE BIOLOGICAL CHILDREN THEY VERY MUCH DESIRE TO ADOPT AND START A FAMILY OF THEIR OWN I'M HOPING THAT BY SHARING THIS IN MY POSTS THAT SOMEONE SOMEWHERE WILL READ THIS AND KNOW OF A SPECIAL PERSON THAT IS PLACING A BABY FOR ADOPTION SO PLEASE IF YOU HEAR OF ANYTHING OR KNOW OF SOMEONE LET ME KNOW

Dad's first solo infusion

Today is a very different infusion for me. Its the first intrathecal infusion that I haven't been to. Plus its the first one using the new port so that makes it even harder for me to not be there. I decided or I should say that me and James decided that since he gets off early on Fridays that there was no reason for me to take time off work to go since he was off and could take him up. I think I'm more stressed about not being up to the hospital to make sure the Dr.s are doing it right because if you know me at all I tend to be thorough with the Docs. I'm sure everyone will do fine. But I'm keeping my fingers crossed for the rest of the day.

post surgery updates

Easton went into surgery on Tuesday at about 12 pm. This was late, but and hour and half earlier than we were told so it ended up being good. They also told us that the o.r. had been schedule for a 4 1/2 hour procedure. I sat there thinking this is a lot longer than any of the other times and it turned out I was right the time had been lengthened just in case they needed extra. His surgery only lasted 2 hours which is about the same time for the others. Everything went well the new

We did share are short stay room with a couple of winners that kept us up all night till around 2am. they were very loud and not very sympathetic to there son who had also just had surgery who was also obviously special needs he would cry they would yell at him for crying you could hear smacking going on but I was reassured by the nurse that he was hitting himself WHATEVER. Then Easton woke up at about 6 due to a check up from the Dr. he has had a lot more pain this time around and also has needed benadryl because of his horrible itch we can't find anything like a rash or skin irritation from the bandages ( he d

oes have very sensitive skin) so who knows all I know is the benadryl wears off and the intense itching begins. Hopefully by the morning this little side effect has worn off.

I was asked if I was going to the yearly MPS conference this year. I would love to go but I'm not sue well I'm almost certain there's no way I can afford it even with scholarships. I miss all of my MPS buddies and so want to meet new ones Plus I want to show Easton off to let everyone know what science and research have done to help all children. Its indescribable the things that have gone on with his cognitive skills. Especially when I have lived through having an older pass away from this and have seen first hand the effects and problems that are brought about by the cognitive problems these kids endure. I wish Shire would just send me and Easton there so they could meet the people they are helping and also put a face with a name especially since he's been in the trial for so long.

port was placed without any problems.

For the rest of the kids we have been busier than ever with them also Weston just went to a big wrestling tournament and did really well he didn't place but went a lot further than last year. Camille is busy working and doing drill team stuff they went to region competitions while I was back east and payson placed in every dance they were in so Saturday after I get bakc they have their state competition. YEAH!!!! I'm excitedd for them to have made it this far and I know they will do well there. Kaylee is doing really well at school she nearly has straight A's, she is also winning the long hair contest. And with all of our running around with stuff she has taken it upon herself to help with Easton and the house quite the task for a 13 year old that's addicted to pysch!!!

another surgery

Sometimes you can get very bored while sitting for days in a hotel room so we gave Easton the camera and he totally posed us as either muscle men,football player,or cheerleaders there are a 100 more photos so I only put a few on here. So far this trip we have completed his semi annual testing. The result have been very good they again have surpassed what the Dr.s have thought he would do his cognitive skills have steadily increased the preliminary numbers are a score of 91. The physical therapist also commented that he actually completed the tests and most kids won't even comply so she would now have to pull out her calculator and actually score the tests. It will be very interesting to see what the results are. Then the scary part another port placement on Tuesday. I pray this one works long enough for the Dr.s to find and approve another device that won't keep breaking.
To break up the monotony of the hotel room we took Easton to a place called the marble kids museum he Had a blast. It was a really fun place for kids he was able to dress up as anything he wanted to be and lately he has been wanting to be a fireman so this was the first thing he dressed up like, then he became a Dr. , and a paramedic, a soccer player ,and a hockey player.

Eastons 6th birthday

 
Easton turned 6 on Nov. 30th and he got to have a friend birthday party. He was so excited and has looked forward to his birthday since about June. We ended up having 15 kids over. I was exhausted by the time they went home I think I was in bed by about 7p.m. that night. One thing that he really wanted at his birthday party was a pinata. So he got one and his dad was brave enough to hold the pinata on the end of a broom handle while 5 and 6 year olds swung a bat at the pinata while they were blind folded scary I thought but he pulled through and the pinata never broke so I had to intervene and help things along. He also got about every toy on his christmas list from his generous friends so that leave us wondering what do we get him for christmas we are clueless now because the last thing he needs is another toy. He has an Ipad, that he uses for gaming and stuff. Any suggestions would be greatly appreciated.

Medically he is still doing very well there hasn't been any further leakage of fluid but do to how recent the last leakage was we had to skip another IT dose on dec.1 this makes his second dose missed It makes me really worried about the build up of gags in the spinal fluid possibly ruining any ground we've gained. But as usual no one knows if the gags have even started to rebuild by missing a couple of doses he is still making great gains cognitivaly and is doing even better in school but who knows how long this can go on. So for now we are scheduled to get dosed on Dec. 29th via LP, and hopefully shortly after that he will have another device placed. And I pray daily that they will find the proper device that will allow these little boys to remain active recieve their medicine and won't break.

 

ever changing ports

These are just a few pics of Easton port problems. These are of the swelling that occurred when the ports broke. One of the pictures is of his back this one was taken a week ago this was after the device had been removed and he was healed from the surgery. After playing for a while I noticed that there was a bulge on the incision on his back that was fluid filled this could only be one thing the hole in the duhra hasn't completely healed and was leaking spinal fluid just under the skin. So we took him up to children's hospital and they were able to look at it and thought that we should give it a week, and see if it has changed. When we took him back up there was still fluid there but not as much as before. The bulge would change sizes with his activity level increasing in size when he was active and decreasing in size when he wasn't. After consulting with the neurosurgeon we decided that this needed to be fixed and that we should probably put in another device as this would be less evasive to Easton rather than each month get an lp even if we had to do surgery every so often to fix a broken one. Now over the weekend his bulging back went completely flat and hasn't bulged out once so for now we are going to watch it, about a week or so and if everything thing works out well he'll receive his next infusion as scheduled. Otherwise he will end up missing 2 doses. I think I forgot to mention that we missed his last dose due to him leaking spinal fluid out of the incision site and them removing the device. Even with missing this dose he has continued to do well in school and there hasn't been any noticeable changes. So I guess we'll see hopefully the gag levels have stayed down and there will be no more problems!!!!!

surgery's blahhh

quick update on things. A couple of weeks ago I noticed more fluid leaking from Easton's intrathecal port site. I watched it for a few seconds and realized it was leaking quite a little bit enough to soak through his shirt to the point I could wring it out so I hurried to call the Dr's trying to figure out what I needed to do both geneticist I work with were gone to a medical conference. I was able to get a hold of them and it was determined that we needed to rush him to children's hospital here in Utah. As we were driving up there I noticed that Easton had started to exhibit signs of low pressure and with the amount of csf he was losing it was only a matter of time before this happened. He was sleeping and I could barely get him to arouse at all. We got him to the hospital, and after I had to explain to nearly every neuro surgeon what was going on and the type of device he had which non of them believed me because as they would say," we have been neuro surgeons for 20 years and have never heard of such a device for this medication" so finally they talked with the Dr's from N.C. and confirm what I had already told them a hundred times and admitted him to the hospital and scheduled him for surgery the following day to remove the device. Due to the low pressure he slept nearly all day and into the night which was good because they weren't able to get him into surgery until 7 that night. Needless to say the surgery went well and the device was removed without complications. What I'm figuring happened is that Easton has recently had a growth spurt causing the tubing in his spine to start slipping creating a larger whole in the durha causing it to start slipping from his spine. This in turn allowed spinal fluid to leak around the tubing and since his tubing had been placed in the same place for so long it had created a kind a channel that once the tubing was completely out the spinal fluid could flow freely through that channel and the only way out was through a small hole were a stitch from the previous surgery had been and not quite healed. So now with all of this we are going to continue the medication but it will be given through a spinal tap rather than the device and right now I'm thinking that until we can get these issues resolved this is the way to go.

On another I had a very "normal" experience with Easton that just shows how well he is doing. I was doing something I Can't remember what but Easton got into trouble and I told him he needed to go to his room until he could act nicer his reply was to call me a BUTTHEAD stick his tongue out at me and run to his room. I stood there shocked and trying very hard not to laugh. I was a little excited to say the least because even though I'm not quite sure how you would rate this on a scale, its such a normal thing for kids his age to do. We did tell him he couldn't talk to mommy like that he said I'm sorry and that was the end of it. he is continuing to learn his sight words and all the other normal kindergarten things and keeping right up with everyone in his class despite missing quite a bit of school due to Dr. visits and surgery's. The port kid had to have another set of tubes placed 10 days after the port removal. Everything well also and they were able to remove the stitches while he was under for the tubes which is great. I hate watching them remove stitches on areas that look so tender.

UPDATE!!!!!!

I know these post are close together but I wanted everyone to know the results of his test. The fluoro showed no break in the port or leakage they were able to get fluid from the port and his white cell count was only 2 which is good this means no infection. They were also able to give him drug through the device with no problems. The only thing that we Stijl need to address or worry about is the fluid that drained from the incision site was it fluid from the wound,csf,or whatever else we will find out. So I might be going back east still but not as urgently as we thought. Now we just have to wait for the dr.s to collaborate and develop a plan of action so I know what I'm doing. We are going to continue to be very cautious about his incision hopefully the very small in size hopes will heal up and no more leakage and no infections

Curve balls

I'm sitting up at the hospital waiting for more tests. I'm sure your asking yourself what I'm talking about son here goes the story. Yesterday we came up for Eastons 21st infusion, but we couldn't get more than 1/2 cc of csf ( cerebral spinal fluid ) as they were trying to get fluid we noticed that fluid was seeping out of his incision site. This is a very big worry because if stuff is leaking out that means bacteria and germs could be getting in, the second worry is that the new port isn't working or broken AGAIN. So here I sit wondering what is going to happen next with everything. The schedule for the day to help us figure out what we going to do is Easton will be sedated and under fluoroscopic light be given a medicine that will kind of glow showing the dr.s exactly if the port is broken and where plus it might show them what is leaking and why. They will also try to draw off more csf to get an accurate white cell count if they can get fluid and it comes back below 10 for the cell count they will go ahead and give him his 21st dose if it's greater than 10 no medicine. If they are unable to withdraw fluid from his device they will preform a spinal tap to get the fluid they need and go through the same process of getting an accurate cell count and depending on it's results either giving medicine or worrying about the rise in white cell count which would probably mean there's an infection starting. Along with all of this the dr.s back east are fairly certain I will be going back to have neuro surgery look at the port and try to figure out what's going on, if the port is broke we'll have our answer we would need to either replace the port or just remove it. When I go back I'm going to talk to them about just removing the device and doing lp's each time, because surgery every other month is getting ridiculous. I guess we will see but as of this moment I'm about to the end of my rope!!!!!

WOW !!!!

This our good friend and Doctor. Dr. Muenzer he is the doctor that gives Easton his treatments back east. And yes that is him coming to my house. He decided that he would give me a break from traveling and come to Utah for a change. So we gave him dinner and he got the chance to see Easton in his own element, which I think is great because I don't think that even with all of their testing the doctors back east realize just how well Easton is doing. Plus as an added bonus he came to start our first infusion at our local childrens hospital incase you didn't get that WE ARE NOW DOING HIS MONTHLY INFUSIONS IN UTAH. We are so excited to have some normalcy to this crazy life. So on the day of Eastons infusion we met at primary childrens and the days leading up to the infusion I was worried that we would have to go back to sedating him for them because if you hadn't already heard his port broke again and we just had it replaced about a week before. But the night before his infusion he let me munipulate the device well not really muniluplate but he let me touch it and hold it securely without flinching away. So I explained to him that we were going to give him his medicine the next day and he had to hold really still for the doctors he said o.k. I told him if he didn't they would have to give him the yucky nose medicine which he hates (versed). The big day arrived and after being poked already 3 different time trying to get blood he was a little squirmy but after being threatened with the nose medicine he held still got accessed and recieved the medicine without any problems. So yeah for him. we did find out that the tubing looks like it may have started to slip down his spinal canal which means that it may become disconnected from his spine which also means another surgery so if you are reading this please remember Easton in your prayers we are praying that it stays in place and that the researcher will soon find another device that will last and won't brake.

On another note we got the results back from his neuro cognitive testing that was done back in August and if I could get a drum roll please bbbbrrrrrrrddddddd his IQ score went up another 5 points which puts him at 90 within normal ranges still plus his scores in all other areas went up putting at age appropriate for all areas even his vocabulary other than the fact that he's still hard to understand sometimes he's pretty much normal the doctors and researcher are eccstatic with his results so are we.

Kindergarten is going well so far he is adjusting really well and seems to like it. We are starting to work on his home phone and address. After he gets those down we will move on to mine and James cell numbers. I was thinking back to Nathan at this age and realized that Easton has surpassed where Nathan start to decline I remember when he was getting ready for kindergarten and he needed to name and show me the parts of his body he could point to the major ones like arms,legs,belly & etc. but he couldn't tell you the more detailed parts such as chest, elbows, shoulder, knee just to name a few Easton has known these for sometime as well as many more. It leaves you wondering what the future hold for Easton? from here I wouldn't be surprised to see him accomplish many things I never expected.

infusion 19 and yearly testing plus family life

Well I completed one more long visit back East. I took my mom,dad,and Kaylee with me. I needed extra help since I had just had major surgery 10 days earlier (thanks heavens for frequent flyer miles)Easton did great he complied with all of the tests and never really protested anything they did. He's such a trooper. We found out that there's been some hearing loss but we don't know if its progression or fluid build up behind the ear drum so another appointment with our local ENT. His opening pressure had come down from 23 when we started the trial to 10 which is great 23 is on the higher side of normal and 10 is completely normal another sign that this drug is helping with thing unseen. He also did some developmental testing that showed improvement in all areas some more than others like in certain areas he tested at 72 months he's only 68 months (its so weird to refer to your 5 yr old as months)but in other areas he tested at like 58 and then age appropriate in other areas so if you averaged everything out he is on track if not above his age (only by a couple of months). His neuro/cogn exam hasn't happened yet the Dr. that happens to preform this test was on vacation while we were there so I am going back for a 1 hour test crazy but this test gives me a lot of info about where he is developmentally even more so than the other test. So I will do what I have to to get the test done. On a brighter note WE ARE FINALLY GOING TO DO THESE INFUSION AT PRIMARYS yeah it only took about 9 months worth of paper work to get things finalized but its done so starting Sept 8Th he will get treatments in Utah I will still have to go back every 6 months for testing. Another exciting event that happened this visit we were able to do the infusion with no type of anesthesia no versed or pesidex (sp) we were able to talk him through getting accessed and after that he just layed there and watched his ipad. Since we had such along visit we were able to go to the beach and play for a while. The weather was perfect. We also went to the cheesecake factory and celebrated Nathans birthday. He would have been 15 Its hard to believe. I often wonder what he would have been like as a teenager what would he be into would he be a sports fan, definitely a hunter, or would he be into computers I guess one day I'll find out. And Easton starts his first day of regular ed. kindergarten on Monday wow all my kids in school and easton is going to full day kindergarten what will I do with myself I know I'll become a bus driver you heard right I started driving bus for the school district and I love it so far its only been a week but it works into our schedule really well.

Camille danced her first performance for drill last Friday at the high school football game the drill team did an awesome job. Kaylee started Jr. High and so far so good she hasn't gotten lost or been unable to open her locker and seems to be liking it so far. Weston started 4Th grade I can't believe how quick every ones growing up on me ahhhhh. And did I mention that my whole family is so excited that I don't have to travel so much!!!!!!!!!!

Infusion 18

Well we've made it this far and it's been good. If you add up all of our trips we've been going back east for about 2 years. It doesn't seem like it has been that long but at the same time it's been forever. So in the next couple of weeks we go back for our semi annual testing I will be very interested to see how much progress he has made. This summer Easton has made some real progress with everything. We put him on the local t-ball team that I coached and he was amazing he took turns well, listened to me and did what I told him like how to hold the bat, which direction to run, how to hold the ball and throw it using the opposite foot to lead off the throw. The cool thing about this is that not only did he listen he tried hard to implement them. another milestone he reached or goal that I had set for him was that he would learn to ride a bike, granted it has training wheels but he started pedaling and was able to steer at the same time. He loved it he thought it was so cool. He was really proud of himself and his accomplishment. He has started to sound out certain words and tries to spell them. For example while we were at the hospital this last month he was practicing writing his name and wanted to spell Westons name so he started with the w sound and wrote W then went onto the E and wrote E and then he realized that the last part of his name sounded like his and finished Westons name we tried to get him to try some more but he got to busy watching t.v. Westons baseball team did really well this year they went to state and had some really good games they played 3 games and all of them were really close and they all played really well. Camille just got another job that she just started the other day. Plus she has drill practice everyday, I also got hired to be a bus driver and started my training so we have been crazy busy and it doesn't end I am having surgery at the end of the week so it really doesn't end because then school will be starting. Kaylee lucky for me has been pretty mellow with her schedule other than girls camp she hasn't had to much going on other than the occasional party and late night with friends. She is going to come with me back east as well as my parents this next time. It will be so much fun to have her with me and spend time together. Last trip Camille went and she got to see what it's all about I think she got bored to death as these trips are pretty uneventful. And they tell me that maybe by Sept. they will have it set up that Easton can receive treatments in Utah and then I'll only go back east every 6 months so we are keeping are fingers crossed.

Infusion 17 & miss genola

This post has been along time in the making. 1st my computer just got fixed and you'ldpli think we were good to go, not quite everything seems to be working fine but when I get on my blog my Internet tells me the browser isn't working and kicks me off, all the other sites I've been to work but this one arghhh!!!!! To start things off infusion 16 went without a catch everything goes the same old same old. Easton is still doing really well with changes including but not limited to trying to hide things he knows he shouldn't have or do which shows a real significance about his ability to realize choice and consequence and cause and effect, he is also talking clearer and with more complete sentences like mommy I need your help with this. Or do we have baseball today? Then he'll proceed to explain to me how the game is played and what each teams does when they are batting or out in the field he is currently on the local baseball team and knows that when it's his teams turn to be in the outfield he has to play his position and if the ball doesn't come near him he has to let someone else chase it this doesn't always happen because he is only 5 but still it's great. He is becoming more and more independent with all activities he can do most fasteners himself such as buttons,snaps,&zippers. On a negative note he also got pneumonia this month with no symptoms other than a fever it was crazy no cough, or cold symptoms. So he has missed about half of his games do to this and flying back east.

Now for infusion 17 it also went well. We were able to give him conscious sedation we gave him less of a dose but waited longer before trying to infuse him this worked really well other than the fact that he slept until about 3 pm. We took him to duke gardens this time so beautiful and the chapel is gorgeous if I were ever to go away to school live on campus this would have to be my first choice!
For some not so good news about the progress of the trial we have kind of hit a bump in the road the ports that they use have broken in every patient at least once and in other multiple times. So now they have put a hold on new patients they aren't allowing any new patients until they figure this problem out. Which is necessary but also means that the chances of Eastons port breaking again are highly likely which means more surgery but he will also remain getting drug which right now is the most important to us but it also means that this will delay this portion of the trial indefinitely prolonging it's submission to the FDA helping it her kids .

Now I will back track again to mid April Camille tried out for the drill team that girl loves to dance and she made it!!!! Not that I was surprised the girl has a lot of talent she is a natural. I was so proud and excited for her she wanted this so bad. She will be awesome. The following week was our towns Miss Genola pageant, I have helped direct this for the past 4 years and low and behold she won the title it was a very busy and exciting time for our family. Not only did Camille tryout for this but Kaylee was involved in the jr. Miss portion were she danced with her group as well she has a natural ability as well I need a large fence to put around these two until they are 30 they are both turning into such beautiful young women. Not ton leave Weston out of all of this he is keeping us busy with baseball his team has only lost one game so it looks like will be going to state with him. I love every minute of it!