...............ongoing pain

Zachary has been having ongoing pain in the knee area for about 2 weeks now. I have called Boston and they didn't really seemed to concerned. Well the pain is still there and Zachary doesn't usually complain so that makes me worry. Well I called again and they said we should have him xrayed to make sure nothing is wrong. Well we went today to Dr. Palominos (well we saw another doctor because she was on vacation) and they xrayed him and this doctor seems to think the end of the rod is hitting his knee and thats what is causing the pain. She said since he is in the cast, to just ice it, and keep giving him motrin/tylonal until we go back to Boston in 1 month. Not sure what they will do, but the poor kid is in agony. He just keep complaining his leg is sore and never did before this surgery. Lets hope the next month goes by fast so we can get some concrete answers.

He is doing great without his medicine we discontinued. No changes as of yet which is great.

...............1 down 7 more to go

Yesterday I had to call Zachary's peditrician to get a refill on 1 of his meds and I asked if we can d/c 1 of his others. We had discussed stopping it back in the beginning of February, but Dr. Anwer didn't want to stop it before his surgery seeing he was going to be enduring alot of stress, fear, and anxiety. Zachary has been on this kick on not wanting to take his "Drugs". He has it in his mind that they are bad, and illegal and the cops are going to arrest him for doing "Drugs". We have tried to tell him they are not illegal and ordered by the doctor so they are ok drugs. We even had a friend of ours who is a cop tell him its ok. The cops won't take him or his drugs because they are ordered by the doctor. He still doesn't believe it so I thought I should ask if now is a ok time to try to take away this specific medication. We are going to give it a try and see if we notice any changes. He may have to go back on it, but if we can stop 1 maybe that will make him feel a little better that he isn't taking as many.

I don't blame him for not wanting to take medications, but in some situations you have to. His father doesn't help this matter because he is against meds too and is always commenting on the medications. Sometimes I would like to slap him up side the head for saying things. I am one to say if it helps you then thats great, but if it makes you worse (mixing with each other and causing all those side affects) then its not great. Luckily none of Zachary's mix with each other and cause any side affects. Some of the meds will not be taken away for awhile and if they do it will be when he is in patient for his seizure testing and medical staff will be on hand. I am scared when they start to wean the seizure meds for the EEG monitoring. But with God and the medical team I am sure he will be safe. Its just me being worried.

This week is Spring Break for the kids. I am off on Thurs/Fri and we are going to have some mommy & kids time. We are going to go to a museum on Thurs (they haven't decided yet), and Friday will be relaxing & hair cut day. I sure need to get the grays taken care of. LOL

Hope everyone has a great Easter.

...............Thank You God

Today I am very thankful for the opportunity I have just been given. I was searching the internet for anything new on the Oculo-ectodermal Syndrome that Zachary has and came across a story of a family in Washington that has a 7 yr old little boy with the same syndrome. We have been alone all this time learning on our own about the problems, cures (none), causes, and research for this syndrome. I did a little more research and was able to locate the mother on Facebook (god I love Facebook sometimes). I sent her a message and she accepted my friend request and we have messaged back and forth a few times already. Our boys have so much in common. They are on similar meds and at similar points in their lives.

I gave this mom our genetics Doctors info so maybe they can get in touch with her and learn some more also. Our Doctor will be excited to hear about their little guy I just know it. Our Zachary has been put on the research of the syndrome while they have not YET. I am sure they will now though or atleast I hope so because the more patients they find with it the more they can learn and link things together. I do ask just 1 more thing, Dear God, please help us all through this journey and keep the boys as strong as they are and have been. They are beautiful gifts to us their parents and we are here to do anything and everything to make them live a normal life.