Children's Dental Clinic

Max had a great dentist appt at children's hospital's dental clinic, they were able to exam and clean everything, Max was extremely compliant.  The dentsits also reminded me about the importance of good dental hygiene with Max.  While his chemotherapy did a great job getting rid of bad cells it also halted the production of good cells that keep his teeth and gums strong and healthy and also help with the production of his permanent teeth.  Chances are Max will be living with his baby teeth much longer than normal kids. 

Luckily, they were also able to locate four very swollen and painful molars that were trying to make an appearance.  Since the appointment we have had one pop through,  we are all anxiously awaiting 3 more to come in =)

Neuro Exam

We had a nice meeting with Max's neurologist, it was our first appointment where we didn't have residents, and other students involved trying to learn more about Max, and we could discuss issues a little more casually. 

We have two different neurologists involved in Max's care, One is the the director of pediatic neurology at Swedish and one at Children's, both have seen at least one other patient like Max in their careers. Although each case is completely different, it is really hard to know what is the best treatment plan, everyone has a different opinion.  We were able to discuss other protocols, however since we have not been able to wean Max to a manageable dose of steroids yet, we are really stuck in the protocol that we are in. The neurologist has done a lot more research and discussed Max's case with other neurologists around the nation, one of the issues that we are also facing is that Children's Hospital doesn't have the materials or labs to be able to follow someone else's treatment plan, so it would require us to fly to another institution frequently.  We really need this treatment plan to work so that we don't have to find a different hospital.  We would really appreciate your prayers for this and if we do need to consult another institution the timing would be very clear to us as parents.

Weight and Teeth

  

What we thought was the beginning of some nice weight gain for Max turned out to be nothing more than an extra full diaper last week when he was getting his weight check. When we checked again on Friday he "lost" another .3 kg. I have no idea where all his food is going...

We also got confirmation that his 2 year molars are coming in and could be adding to his increased fussiness lately.  Molly's molars also made an appearance this last week.  We hope that these teeth come in quick, teething twin toddlers are no fun at all.  But it is a relief to find a reason for all of their fussines.  Max has an appt at Children's dental clinic this week so hopefully we will get confirmation that they are all in =)

Cognitive Assessment

I had a nice discussion with the child physcologists that have administered Max's neuropsych testing the last couple weeks.  They were very pleased with the cognitive acheivements Max has made in the last 6 months.  They have seen significant developmental growth in all areas which isn't always the case with kids undergoing chemotherapy.  They reported that he was performing at age appropriate levels in all areas.  He performed great in his understanding of language and is lacking slightly in his expressive language skills.  Which means he understands more than he verbally shares with us, which we have always known to be the case. They encouraged the continued use of early intervention therapy and will continue to closely monitor him.  They said that chemo effects on the brain can happen down the road and so it is important to keep up with regular monitoring.

It was so interesting to observe all the tests they performed last week. It's amazing to see all the test they can do on a 2 year old to assess how his brain is functioning.  I was allowed to be in the testing room and he was allowed to sit on my lap, but I could not encourage, reword any questions, or respond to him in any way.  He had doctors watching on the other side of the 2 way glass in the room next door and tried to assess how he approached different tasks.  Lots of puzzles, books, pictures, pretend play, etc. I am not sure how accurate some of the scores really were, because the examiner would ask him to do something and he would flash his cheeky smile and do the exact opposite and watch her for a reaction. Several times she couldn't help but laugh because she knew he was trying to tease her and she didn't know how to accurately grade those tasks.

We still have his gross and fine motor assesments coming up next week and a neurological exam this afternoon.  Thanks for the continued prayers, it is so nice to get good news and see all these answers to prayers.

Ocean

We had a chance to getaway to the beach for a couple days last week.  It was so nice to do something fun with the whole family. The kids enjoyed horse rides on the beach, playing in the sand, flying kites, swimming, going on hikes to checkout cool lighthouses and just hanging out.

 

Papa and Max

Grandma and her girls

8th Infusion - Cancelled

Today we spent the day in the clinic getting checked out.  Max has had a flair up of a few symptoms the last couple weeks.  He has had some increased fussiness and irritability, he has become more clumsy and out of control at times, and his therapists have noticed some increased changes in how his body is trying to compensate for his lack of balance and coordination.  He has been clenching his feet when he walks on the floor to try to keep more balance and has been doing more leaning on items to gain support and doing a few other things with his body to compensate.  They have had some concerns about his safety, so we have gotten rid of the baby crib and have him sleeping on a mattress on the floor for now until we can slowly work him into a more permanent big boy bed and are trying to be more careful when his body is feeling out of control, so we don't have any major accidents.

We found out last week that Max was going to be due to skip an IVIG infusion this month, which was a surprise to everyone including the doctors and nurses.  There was some question about whether he was ready or not and after discussion with his oncologist today, we went ahead and skipped it for this month only so we could follow the protocol.  We did go back up on the steroids to try to curb these new symptoms in hopes that us tapering his medication is what caused the change.   If he doesn't improve in the  next week or so then we will go ahead with the IVIG infusion.  The problem is that one of the goals of his clinical trial is to see if IVIG really make a big difference with this disease and for us deviate from the schedule would cause a trial violatioin and could invalidate some of the research they are gaining on Max.  So before we violate anything we want to make sure this flair up can't be controlled by other means.  We are going to keep a close eye on him to watch these things and hopefully this medication change will fix everything and we can continue as planned.   We appreciate your continued prayers as we try to figure out what is best for Max. It is really hard to know as parents how to advocate for your child, we want to try to help gain more research on this disease but are hoping we aren't sacrificing Max's health.  We did discuss that in the future once we get the steroids down to a manageable dose that we will be allowed to treat Max with an IVIG infusion at the onset of new symptoms without any hassles from clinical trials.

Some good news we learned today is that Max gained .2 kg!!  First time he has gained weight in  7 months. The doctors are monitoring his blood pressure and did some more glucose testing to make sure we aren't taxing anything, there could be some potential issues with him developing temporary diabetes which we could treat with insulin if needed.   His hemoglobin and hematocrit were low, but with the amount of meat  Max eats we aren't too worried about that. One of his favorite two word combos right now is "More Meat!" I think he could eat big steak every night if I would let him =)

Sorry for the delay in getting posts up, both our camera and laptop have been on the fritz lately, hopefully we will get everything up and running and can keep everyone updated more regularly.

OMSlife - A support and love site for children, families and friends, battling OMS

We received a very nice letter this past week from a grandfather who has a granddaughter, Alexa,  fighting the same battle that Max is.  He was very encouraging and supportive for what Max and our family have been and will be going through.  He and his family are working on connecting more patients, families and friends dealing with OMS to bring more knowledge of this disease in hopes that we can someday bring a cure. If you have a minute we would encourage you to check out their website. It includes great features and they have compiled lots of information on this rare condition, and if you have tissues handy and feel up to the challenge check out the videos.  We have been asked by doctors to put together video footage of Max as well, but I don't think we are emotionally ready for that challenge yet.  Hopefully soon...

http://www.omslife.org/

Congratulations Madison!

Congratulations on a successful year of  preschool!