Sunday, December 21, 2008
Good news: John will be home for Christmas and Matthew's blinking has diminished. It hurts to sit at the computer, so I'll make this short and sweet: we wish everyone a merry Christmas and a happy & healthy New Year! Hope you enjoy the video of Matthew singing Jingle Bells - he knows many of the words, and when he forgets he just improvises!
Tuesday, December 2, 2008
Other news: John was home for Thanksgiving. It was just the three of us and Matthew was very happy to see his daddy again! John is in Norfolk this week but will be home next week. He'll be home every other week during December...which is good b/c I am having my hernia surgery on the 15th (mom is off for a month so she'll stay with me on the days he is away). It's a 2-4 week recovery period, and I'm not allowed to lift anything over 15 pounds for 6 weeks...that includes 40 pound Matthew!
Thursday, November 20, 2008
- Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.
- Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.
- Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
- Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
- Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
- Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
- Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.
- Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
- Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
- Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
Friday, November 14, 2008
I took Matthew to his pediatric eye doctor last Friday. On Monday (maybe Sunday?) I noticed he was blinking hard with both eyes..Matthew never blinks like that. The only thing "new" that we did was get the dilating drops in his eyes. Here we are one week later and Matthew is still blinking and doing it more often. It is very disturbing for me to watch. I called his eye doc and his advice was to put saline drops in Matthew's eyes whenever he blinked...that would teach him to stop blinking (aka punish him)..I don't think so! Matthew is NOT blinking on purpose...watch the video, it is completely involuntary (he is trying to watch a Veggie Tales movie).
I found out that Johns Hopkins Children's Hospital has an Eye Emergency Room so we are driving 1.5 hours tomorrow to find it! Hopefully someone there will tell us what we can do about this...I firmly believe it is a side effect of the drops which contain: cyclopentolate hydrochloride, benzalkonium chloride, boric acid, edetate disodium, potassium chloride, sodium carbonate, and hydrochloric acid. Please pray that the blinking stops.
SATURDAY UPDATE: The trip to Hopkins was a total waste of time. There was a young Resident on duty there and he obviously had no experience with such blinking or kids for that matter. He actually wanted to put more dilating drops in Matthew's eyes to examine him. I said NO WAY and he said there was nothing else for him to do. I kept asking: "What is this?...Why did it start and how do I stop it?...Have you ever seen this before?" He had no answers and told me to see our pediatrician. Wow, I drove all the way to Baltimore for that?!
Sunday, November 2, 2008
Matthew had a blast on Friday night. He was a Cowboy (b/c he loves horses) and enjoyed going door to door for candy (which I later switched out with GFCF versions). He said "hello...trick or treat...thank you" at every house. He received many compliments and one lady even said he was her favorite and gave him a special toy. Unfortunately, John wasn't here to participate but I have plenty of photos. (See Facebook :)
Monday, October 27, 2008
Matthew is doing fine. We received the results of all his Doctor's Data lab tests and he "had some good heavy metals pulls" from the transdermal DMSA (according to his DAN) and a lot of yeast and bacteria in his gut. So I'm getting his rx antifungal filled (Ketoconazole) and added Candex and Grapefruit Seed Extract to his daily juice concoctions. I also added Selenium b/c his blood test showed he is low and he needs that to help move the mercury out of his body.
Saturday, October 18, 2008
She once again brought up the MRI..I told her we didn't want to do it b/c I've heard plenty of regression stories (due to sedation) on the various autism-related Yahoo groups I'm on. She said fine but if we notice any seizures, headaches/blurry vision, partial paralysis, etc I'm to call her ASAP. She told me she had another patient (a 5 year old boy with autism) whose parents didn't want to do an MRI but she finally talked them into it and found a brain tumor. I really don't think Matthew has that and he would tell me if his head hurt. Anyway, John & I agree that it's not worth the risk of losing all the skills Matthew has worked so hard for over the last year. Maybe when he gets older (and can lay still for 20 minutes) we will do one.
P.S. Matthew was on his best behavior at the hospital...very well-behaved, friendly, and cute!
Monday, October 13, 2008
Matthew and I went to two farms/fall festivals/pumpkin patches over the weekend. Above are 2 videos of him riding ponies...well, the first one was really a horse, it was huge! When I get a chance I'll create a slide show of our adventures b/c I took a lot of cute pictures.
On Saturday, we went to Cox Farm in Centreville, VA with Jenn, Carol and her baby girl. It was hot and the place was packed. On Sunday, we went to the Old Mine Ranch in Manassas, VA with the Mankin family. It was a lot smaller/low key and the kids enjoyed running in the corn maze and jumping in the moon bounce. Both places had pony rides, steep slides, petting zoos, hay rides, and lots of pumpkins/goodies. Matthew was so worn out that he came home and collapsed on the couch. I'm glad we went and will look for more horse riding opportunities next weekend.
Monday, October 6, 2008
On Friday, I had a breast biopsy done b/c they found a solid mass on my mammogram & sonogram...I should know the results by Thursday. John is now attending a 2 month Navy course in CT but did come down for 2 days to celebrate our 15 year wedding anniversary and to take me to the procedure. My mom drove up from the VA Beach area to care for Matthew while I was recuperating...I was just really sore/swollen for 3 days afterwards and not allowed to pick Matthew up.
On Saturday, I noticed a brown spot on Matthew's tooth so I'm afraid he might have a cavity and he currently doesn't have any dental coverage. So John is working on that and I need to find a pediatric dentist who won't try to push fluoride (a neurotoxin) or nitrous oxide (a potential cause of regression) and has experience with ASD kids.
Today, I had to take Matthew to LabCorp to get his blood work done (4 vials full). This had to be done before breakfast and after obtaining a first morning urine sample (not easy for a boy who still wears diapers and refuses to wear a collection bag)...but Matthew did comply and peed in the little potty so I got the sample. Of course, the blood draw didn't go as easily, but there was less screaming/kicking this time. (I just hope they did the Doctor's Data kit correctly and remember to call DHL for pick-up!)
I forgot to mention we also did a stool sample on Sunday...that's always the easiest of the three tests...which are to check his metals excretion, kidney & liver functions, and red blood cell counts during chelation (and need to be repeated every 2 months - ouch!).
Now I'm waiting on a call from our DAN nurse b/c we agreed to change Matthew's DMSA formula due to a rash from the cream. We're supposed to change it to a emu oil base, but now the big-wig pharmacy is giving me a hard time about it...so the nurse is calling the owner to see what the problem is. I hope we don't have to go back to the other pharmacy b/c their shipping charges were 3x as high (overnight vs. 2 day air), they wouldn't bill our Tricare insurance directly, and the cost of the Glutathione cream wasn't being covered!
So now I wait... on many results.
P.S. Happy Birthday Dad/"Popeye" (Matthew's term for his Grandpa)...he turned 69 today, and mom (aka "Nini" = Granny) is probably stuck in traffic trying to get back home to him!
Saturday, September 27, 2008
Here is a video I made last night after Matthew's bath. It is him is singing the alphabet song. He still has some pronunciation issues but has come a long way and we are very proud of him. Remember, this is a boy who only had 3 words at age 2...he didn't point, had limited eye contact, only sometimes responded to his name, and was often in his own little world. But even then, he was very loving and quite the little ladies man! :)
Wednesday, September 24, 2008
John will be leaving in a few days for 2 months (he's going to CT for a submarine course). Matthew's Occupational Therapist recommended that we make some videos of Daddy so I can play these for him when he asks "where daddy?" or "daddy home?". Here is the first one...Matthew LOVES to play hide and go seek with his dad. He requests it every night as soon as John walks thru the door!
P.S. Please cover your eyes when I show the dining room table!!! It is covered with Matthew's school art projects, his lab test boxes, etc. That room looks like a bomb went off in there...I will clean it one of these days!
Friday, September 19, 2008
Monday, September 8, 2008
Wednesday, September 3, 2008
Tuesday, September 2, 2008
Matthew also loves elevators...hmm, maybe b/c they have sliding doors! He will go up & down 50 times if you let him. The funny thing is he used to be terrified of these as a baby...he would shake with fear and I'd have to hold his hand/tell him it was OK. Now, I have to pull him out!
He also used to be afraid of the merry-go-round at Burke Lake Park. I don't know when/how he got over this fear, but he really enjoys the one inside Springfield Mall. Here are 2 video clips...one of us in the elevator there and the other of Matthew with his daddy on the ride.
Saturday, August 30, 2008
Friday, August 29, 2008
The schedule we use is 3 days on, 11 days off and we'll always do it on weekends so I can monitor his reaction. I was expecting a rash (a somewhat common reaction) at the application sites but he didn't have any. (Thankfully, he is not allergic to sulphur.) The only difference I noticed was that he was more tired/crabby on the 2nd and third day and then for 2 days after that. On the 11 days "off" I'll continue to give him his daily Glutathione cream at a larger dose (1 ml)...this helps with detox.
From what I've read, it usually takes anywhere from 1 to 3 years to chelate a child with heavy metal poisoning...hopefully it won't take too long for Matthew. He is young (almost 3.5) and has less exposure than older kids (especially the children that were clobbered with thimerosal during the 1990's). We'll keep doing the DMSA cream until we don't see good "pulls" (of metals in the urine/stool tests) any longer and then I think we'll ask for DMSA and/or ALA in capsule form (which I could mix in his juice). I know suppositories and IV chelation would get bigger pulls/faster results but I'm just not interested in doing those right now...besides our DAN doesn't do IV's and Matthew wouldn't let anyone put one in him!
P.S. Here's the link to the pharmacy/product we are using: http://www.leesilsby.com/dmsa.php
Thursday, August 28, 2008
They glued about 30 leads onto his head and then wrapped it in gauze. The process took what felt like forever b/c Matthew was screaming and crying the entire time. By the end of the application, he had broken blood vessels all around his eyes and looked like he had big red freckles on his face (he still has a few). Matthew has sensory issues so having a stranger touch his head, clean the spot, put on the cream, place the lead, apply the glue, blow the glue dry... was pure hell for him. I had to help hold him down with another technician b/c he kept rolling over and shaking his head. (Matthew only weighs 40 pounds but he is a fighter and very strong when he is under stress!) It's not something we will do again any time soon...if ever!
Matthew was better once he got out of the sheet "straight jacket" and moved to his private room - which was in the new neuro wing and was very nice...had a gorgeous view of a reservoir and an old fort. He had a pack hanging from his head down his back and that was plugged into the computer with a very long cord so he could walk the length of the room. He did get the cord caught on furniture twice and pulled off the gauze cap which caused all the wires to fall onto his face and I was freaking out b/c I thought he would try to rip them off this scalp. I opened the door and yelled for help and the nurse came in and put his "silly hat" back in place.
I brought GFCF food and we were provided with meals (for him only) so I ate those and Ni-Ni (his Granny) went to the cafeteria. John came to visit after work. We couldn't use the DVD player b/c it interfered with the equipment so we watched TV, read books, sang songs and just hung out. Matthew would not put his head down to sleep so I got in the hospital bed with him and had him lean up against my chest. Once he was asleep I moved his head to the pillow and I stayed in the bed with him. He woke a few times during the night and I was glad I was right there to comfort him back to sleep. My mom also spent the night in the room.
I was supposed to press a button when I suspected a seizure but they (=staring spells) happen so infrequently that I never pushed it. I also had to move the video camera around when Matthew moved out of position so that was kind of neat playing with the mouse and watching his brain activity. It will be several weeks before we get the results. We go to see his ped neurologist in October.
Monday, August 25, 2008
Thursday, August 21, 2008
Sunday, August 17, 2008
Monday, August 11, 2008
Saturday, August 2, 2008
Then the kids (who are aged 3 to 7 years) were broken into groups and sent to one of six stations: soccer, baseball, track, obstacle course, bowling, and basketball. Matthew refused to participate in the basketball corner and ran around the gymnasium instead (as did a few other "explorers"). He was a little more interested in bowling and absolutely LOVED the obstacle course.
A pretty volunteer tried to get him to play baseball, but it didn't last long b/c there are sliding glass doors outside the gym and those are Matthew's favorite thing to watch (open & close). He never made it to soccer (he was pretty overwhelmed by then).
We did stay for the parachute activity, and Matthew enjoyed running underneath it but got frustrated when it came down and the kids had to get out. So we waited for him to stop fussing, offered him juice, and said let's go home. We wanted to leave on a positive note so he'll be excited to go back next week. I think this 5 session "camp" will be really good for him b/c he's with a group of 20 kids (plus their parents/siblings & camp personnel) and is being introduced to sports/new physical activities. (P.S. You can click on the 3 pictures to make them bigger.)
Tuesday, July 29, 2008
Monday, July 28, 2008
We have 3 Whole Foods stores nearby that I frequent for his GFCF foods. Today I hit the jackpot in Fairfax...pear juice boxes! As you can see in the pic, I now have 48 of them...woo-hoo! The last time I went there they didn't have any, and now they don't b/c I cleaned them out! And none of the grocery stores carry pear juice in bottles anymore...what's up with that?! So if you ever see pear juice (any brand), let me know b/c I'm always on the hunt!
Saturday, July 26, 2008
Thursday, July 17, 2008
Matthew's favorite part of the session was jumping on the mini-trampoline. His least favorite part was having her put a dollop of lotion in his hand and then rubbing it on his arms...he didn't like the feel of the lotion or her light touch, so to combat that we will do deep pressure. She said his fine motor skills are age appropriate and was impressed with his attention span. The session went well and it's at the same clinic Matthew used to visit for speech so he is familiar with it and was very excited to return.
Thursday, July 10, 2008
Sunday, July 6, 2008
Thursday, July 3, 2008
Tuesday, July 1, 2008
Matthew has a few friends but the one he talks most about is Peter (he says "go to Peter's house"...see video below). Peter is in Matthew's class but will be heading off to kindergarten soon. He is 5 years old and has a super cool train table with LOTS of trains that Matthew loves to play with. We are looking forward to the next play date!
Monday, June 23, 2008
Yesterday we went to a pirate-themed water park. It has a 24-foot high play structure with a 300-gallon dumping bucket, water slides, and waterfalls. It's close to our home and a good introduction to water parks (geared towards kids 3-6). Matthew enjoyed it until he went down the slide and went under water. Due to his sensitivity issues, he has an aversion to getting his face & ears wet. After that he kept repeating "go home, got to go home" so we left. We will try again in a couple weeks.