March 13, 2010
Off all meds!!! Doctors are not sure
about Walters recovery. We (parents)think he is doing wonderful but are
going to California for a second opinion. We are back out of
isolation. Walter can run and play with other children again which he
absolutely LOVES. He is still behind in speech and goes to speech
therapy and occupational therapy. He calls all of his friends "cousin",
we believe bc the only people he was able to see this past year were
cousins that were healthy. It has been a struggle bringing Walter and
his sister back in public we are having to reteach most public social
skills. We are not ready for a sit down restaurant yet unless it
involves video games and furry animals that dance around. We are
constantly watching his eyes for any sign of jerking. We find ourselves
testing him everyday on hand steadiness and balance. We yearn for the
day we can rest easy and not worry about a relapse. His urine screens
and CAT/MRI scans have all been coming back clean.
Oct 20, 2009 Walter is doing very
well. We are weening off ATCH. Our current dose is .09!!! If all goes as
planned we will be off all medicines except monthly IVIG infusion on
Thanksgiving day.
August 12,2009
We feel horrible that we have not posted an update in so long. Walter is doing amazing, we feel so lucky because so many other families with OMS children are having a hard time with relapsing. On July 13, 2009 we got the ok to start to ween Walter off of the most serious drug ACTH. If all goes well we should be completely weened by Christmas. We will continue to do the infusions once a month for another year. We have gone back into isolation with the children bc of the threat of swine flu. This time isolation has not been as bad bc we bought a house outside of the city and moved in June 1, 2009. Walter has all the land he could ever want to run and play on and also a big house that on rainy days we have not gotten cabin fever in yet. There is enough room for everyone in our family to have their own space. Before we went back into isolation we were able to attend my families reunion in Michigan and camped the whole time in a tent which the kids just loved. Walter craves the need to play with other kids so we do try to let him play with cousins we know are healthy outside on the playground we built for Walter and Kaiya. We will soon be adding new video. Walter physically is all back but our speech is still greatly behind and we have a wonderful speech therapist that comes 5 times a week, plus Will works with him a minimum of 15 in morning and I work with him minimum of 15 minutes in evening on his speech.
February 4, 2009
Walter had a full body MRI yesterday, everything looked normal!! Also the team taking care of him was very helpful and this made a world of difference. Later this week we have an IVIG infusion then its off to Fripp Island while mommy goes to training for 2 weeks.
February 1, 2009
BCBS are pulling shenanigan they are trying to pull their insurance back and billing us for all treatments up to this point which is a total of around 300,000 dollars. They also have informed us that they are no longer paying for any of his medicine. Luckily we just received a shipment in and are safe for at least a month. If we can't get that medicine in a month though Walter could come out of remission and or stop walking again. Like we don't have enough to worry about with Walters health now we have to battle the insurance company yet again. There is a team of lawyers with a nonprofit organization that has taken our case and are going to help. Lets just hope they move quick enough.
Walters health at this time is great. We keep him in strict seclusion so he is not exposed to any sickness. Even nana's and papa's have not been able to see him but with flu season we can not take that risk. We go get another full body MRI done on 2-3-09 and then IVIG is on 2-6-09. Walter is saying more and more words everyday and back to his normal 3 year old naughty ways by coloring all over the wall in his room with a crayon bc he thought he was writing his name. He does really miss playing with other children and can not wait to run around and play with others soon we hope.
January 12, 2009
Walter had a head MRI 2 days before Christmas, which came back negative for any tumor. We have planned a whole body MRI for the beginning of February. The whole body was suppose to be done on last trip but there was a miss communication. We continue to fight with insurance and pharmacy's about our different drugs and supplies. It feels like we are in constant battle with them everyday. We had a heartbreaking thing happen today. A father, son,daughter were riding a bike in front of the house today and Walter saw them, ran to his room, put his boots on, and ran to the window shouting "wait for me"!! He got really upset bc he could not go out to play with them. His immune system is still to low to be able to be around other people specially children. Walter really misses other people. The seclusion has been harder on all of us then we thought it was going to be. How do you tell a 3 year old boy, who feels almost normal again that he can not be around any other child? We are thankful he is getting better so fast but still have many battles to go.
Nov 7, 2008 Back to Wake Forest we go for our 2nd chemo treatment. We also got the result for our HVA/VMA test, they were elevated. We will have to wait and see what the results are from this weeks before we start to worry. This is the test for neuroblastoma. All in all it was a good day as Walter had no reaction to the infusion. The nurse did poke a hole in his vein putting the IV which was very painful and we didn't finish the infusion until 11 pm. But we are just so thankful we had no major problems!!
*** We also got some very special news while at Wake. Sorry I don't know all the details yet, but Julie's work (Department of Community Corrections) has decided to help us with Christmas this year! Julie came into the room crying after finding out.
Nov 3, 2008 Well this was our first IVIG infusion here in Asheville. Walter had a great time and it only lasted from 8 am - 3:30 pm and the staff at the infusion center were great!!
Oct 24, 2008: Walter is off to Wake Forest for our infusion. This was his first chemo treatment with a drug called Rituxan. Julie and I were very scared as you can die from this infusion but all our doctors agreed that it was worth the risk. Walter had no reactions to the infusion!! We arrived at 6 am and had the option to stay over night as the infusion finished sometime close to midnight. We decided to come home as we have had enough hospital stays to last us sometime.
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This is a work in progress from this point down. More to come very soon...
Sept 14: We take matters into our own hands in a desprate attemp to get awnsers, we are almost sure Walter has OMS even though our local doctors says no. We send Dr.Pranzatelli a long email and video of Walter, he is the world's leading expert on OMS. Shortly there after we are told to cancle our Wake Forest appointment and get on a plane to Springfield IL to see them!!
July - Sept: We got to OT and PT 4 days per week to keep Walters body from losing musle. Everything is staying about the same, some things wax and wan such as his eye movements. He has good days and bad days but cannot walk at all since June 13. We follow up with all our doctors appointments and push for a 3rd opinion (we got a 2nd the first week). There are only two neurologist that see children in Asheville. We are told that UNC cannot get us in for 3 months. UNC will not push our visit up unless our local request them to, our local doctor refuses... We call repeatly and ask about OMS and treatment options. We are told that it will now take 2 years for Walter to maybe recover. I asked him is it possible that he missed something and this is what I got, "If we are missing something, it is something bad, something you don't want to know about such as a rare lipid disorder that will result in death" I beg him to setup an MIBG scan and he does for 2 weeks at Wake Forest.
July 3, 2008: We check back into Mission, we know and tell them they are missing something. His eyes are all over the place. We ask the doctors about neuroblastoma, the doctors tell us that they don't think so and refused to do a full body MRI. We also asked our neurologist about OMS at this point, we were told NO, it could not be this... Needless to say they all they do is another MRI of the head, they try to add contrast be didn't properly sedate him so he woke up before the contrast could be adminstered. They also did a spinal tap. We leave with Mission with the same diagnosis, post viral cerebellitis as everything came back normal.
The bright point of our visit this time was the genetics doctor (Dr.Allen) stopped by, while he didn't have awnsers he was very kind and excluded all the genetics disorders.
End of June 2008: Walter condition is progressing. His eyes are starting to dance around, he is shaking all over like the late stages of MS, he can no longer talk, he is having rage attacks, and drooling so much that his shirt has to be changed many times per day. Our local neurologist said this was all normal...
June 13, 2008: Walter cannot balance himself at all. Back to mission, this time we are admitted. Walter gets all types of blood & urine work. Then an MRI of the head. Local neurologist diagnosis Walter with post viral cerebellitis. We are told Walter will make a complete recovery in 2 weeks. We are told to follow up in 6 weeks
June 12, 2008: Walter appears drunk when he walks. We check into mission for a CT scan of his mead to check for bleeding.
June 11, 2008: Walter has a nasty fall at Sam's club busting his lip
Early June 2008: Walter goes to his first baseball game with family and friends. After the game ends he gets to run around the bases, he was looking forward to this the entire game.