2 Corinthians3:5-6 "We are not sufficient of ourselves to think of anything as being from ourselves, but our sufficiency is from God. He has made us sufficient as ministers of the new covenant, not of the letter but of the Spirit; for the letter kills, but the Spirit gives life"

Please continue to pray that my husbands’ job picks up. He does real estate surveying and is paid per job. The market has slowed down a lot lately, and it’s been very hard financially. He is only making in two weeks, what he used to make in one week. We will be eating lots of fish (my husbands catches lots of fish) and spaghetti, and soon when Deer hunting season comes in, he will try to get a deer for the freezer! These things help a lot with the grocery bill. I am trying to pick up some extra hours at the horse farms and helping my sister with medical billing (she has her own business) but it’s not making up the full amount of loss. Schools are closed 4 days in September, and 3 days in October already. It’s quite hard to find a job that will work with this many closing dates for me. So this really limits me looking for full time job. Going to work to pay for childcare doesn’t make sense. We have no child care for Jesse now other my husband and I. Occasionally his aide from school would be available, but not on school closing days as she has to be at school for most of these are teacher study days. She also has her own children and grandchildren to take care of too. So as it is for many, life is getting harder financially. Praying something gives soon! (our medical coverage is through Jack’s job, so we can’t look at any other employment for him right now and risk losing the only health coverage we have for us and Jesse.)

Spiritually, my husband and I are of good health. We have much faith that things will change somehow, someway. We never give up hope! We have decided that since his work is so slow, we will not take a vacation this fall like we usually do, and instead take the pay and work whatever jobs come his way during that time.

To view pictures clearly, place you mouse on the picture.




Many photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos

(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."

Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

Saturday, September 1, 2007 2:58 PM CDT

Wednesday Sept. 5th, Jesse had another seizure while at school. The night before he seemed more tired then usual, but otherwise okay. He got up and ate breakfast fine, but was still a little tired acting. (he tends to get way when it's hot and humid, which it was) SO off to school he went as usual. Well at 12:15pm just after his lunch I got a call that he was seizing in the gym. So they called 911. The first report I got was that he hit his head on the wall when he fell while seizing. So we made sure they did a CT scan again. Come to find out later, that didn't happen. He was approcahing a ball when he started to fall and started seizing. His teacher supported his fall as he went to the floor. As it turned out, Jesse didn't care much about eating his lunch that day and wouldn't drink his drink either. That is totally unlike Jesse, he loves to eat and drink. (this was just 1/2 hour before he seized). The seizure didn't last as long as the first one.. only 1 minute and 45 seconds or so. He rebounded very well from this seizure also. This time I am told by the neuro on call, that his EEG was not normal. That it shows mild "generalized seizure/epiletic activity through out his brain. They feel that they may be adding epilepsy to his dx if the seizures continue. They also went through his list of supplements and see no need to change any. This team also feels that GAG reduction can also cause changes in the brain and cause seizure activity. So again.. a waiting game to see what happens next. Jesse is still smart as can be and hasn't lost any skills through these. The first seizure he seemed to actually become more aware and understanding. We are also still getting most BM's on the potty. So again doctors and I are both in agreement that no meds are needed at this time. Jesse recovers well and hasn't lost skills. So unless they become very frequent or he starts losing ground during a seizure, we will stay med free.

Thanks for checking in on Jesse! Keep him in your prayers, and that miracles really do happen. GAG storage just might be reducing and just maybe his brain is repairing slowly.


Thanks for stopping in to check on Jesse. First I will update starting from the day of his seizure. (August 16th this happened, you can read about it in my previous journal entry.) Jesse rebounded so quickly from this. The same day he was demanding food at lunch time and playing football that evening with guys on TV during the game. I did stop one supplement that I think may have put him over the edge. (Vinpocetine) Only time will tell. Jesse still had some secretions for about 10 days after the episode due to the ulceration and healing of his tongue and a spot inside his cheek that he bit during the seizure. All of that is healed now and the drooling has stopped also. We had an EEG on August 29th at JHU. Jesse did wonderfully during this testing, no sedation was needed. He enjoyed listening to us talk for an hour while I sat on the bed beside him massaging his hands and fingers. He looked so cute with his head all wrapped up in gauze holding the wires in place. I wish I would of have had a camera. ( I never think about taking the camera to doctor appointments.) The EEG showed no seizure activity during this time and nothing that seemed abnormal. This was good news!!

Jesse continues to be free of seizures to this day! We had a couple of sleepless nights, but I came to the conclusion he was cold at night. He kept kicking his blanket off at night and would be awake at 2 or 3 am. Each night I went in and covered him back up and he would go back to sleep. Well I started putting sweat pants on him at night instead of shorty Pj’s, and he now is sleeping through the night again! So I am glad it was this, and not discomfort in his head!! I did have me concerned since Jesse has been sleeping so well for quite a while now!

Possibilities of why this seizure happened. These are hypothetical because we have no MRI’s or CT’s of Jesse’s brain before now. (other than when he 2 ½ years old, and no one wants to dig them out the basement, since that was 10 years ago)

1)Vinpocetine could have caused the ventricles to enlarge too much adding pressure on the brain, or too much excitotoxin in the brain. (good possibility, we think the enlarged ventricles may be left over from old hydrocephalus from when he was a younger though. Ventricles don’t always return to normal size, and he presents no real signs of hydro.)

2)Just an MPS thing as he ages. (I don’t believe so)

3)Substrate breakdown of stored GAG material in his brain, since he has been on genistein for just over 2 years now. GAG’s can be breaking down and leaving his system. Any change in the brain can trigger a seizure. ( this is very possible also)

4)Added storage or atrophy in the brain. (I don’t think so. Jesse continues to improve regularly and not regress)

My beliefs are strongly with scenario’s #1 or #3. I honestly pray it is # 3. This would be a miracle in itself. Again only time will tell.

Jesse also started school on Monday Aug 27th, so far so good. He has a new teacher this year. She seems to really care about the kids and is working quite diligently at getting to know each child and working with them for who they are. Not trying to mold each child to her own standard. So I have a good feeling that this year may go well! THANK GOD for understanding teachers. The bus has been on time each day, both for morning and evening. This too is a blessing.

2 Corinthians3:5-6 "We are not sufficient of ourselves to think of anything as being from ourselves, but our sufficiency is from God. He has made us sufficient as ministers of the new covenant, not of the letter but of the Spirit; for the letter kills, but the Spirit gives life"

Please pray that my husbands’ job picks up. He does real estate surveying and is paid per job. The market has slowed down a lot lately, and it’s been very hard financially. He is only making in two weeks, what he used to make in one week. I am trying to pick up some extra hours at the horse farms and helping my sister with medical billing (she has her own business) but it’s not making up the full amount of loss. Schools are closed 4 days in September, and 3 days in October already. It’s quite hard to find a job that will work with this many closing dates for me. So this really limits me looking for full time job. Going to work to pay for childcare doesn’t make sense. We have no child care for Jesse now other my husband and I. Occasionally his aide from school would be available, but not on school closing days as she has to be at school for most of these are teacher study days. She also has her own children and grandchildren to take care of too. So as it is for many, life is getting harder financially. Praying something gives soon! (our medical coverage is through Jack’s job, so we can’t look at any other employment for him right now and risk losing the only health coverage we have for us and Jesse.)

Spiritually, my husband and I are of good health. We have much faith that things will change somehow, someway. We never give up hope! We have decided that since his work is so slow, we will not take a vacation this fall like we usually do, and instead take the pay and work whatever jobs come his way during that time.

To view pictures clearly, place you mouse on the picture.




Many photo albums are in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos



(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."

Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Friday, August 17, 2007 10:03PM CDT

Breaking, Shocking News!!

Jesse experienced his first seizure on Thursday morning about 10am. What a whopper it was!
First I want to say, that he is home and he is totally back to normal Praise God!! Thank you to everyone who knew and prayed! Your prayers were heard! I will tell you what happened first and then give you some possible scenarios of what may be happening or could be happening. Only time will tell.

Jesse’s seizure started with loud drawn out scream or 10 – 15 seconds, then he went stiff and every part of his body was shaking from head to toe. I gently held his arms (he was sitting on the couch munching dry cereal when these happened) so that he wouldn't hurt himself. His breathing was short with heavy gasps of air and very congested sounding due all the the secretions working up when he seized, then I saw blood coming from his mouth also. So I slid him to the floor and laid him on his side so the blood and any other secretions would roll out instead of him choking or aspirating on them. (the blood is from where he bit his tongue, but not too badly) The seizure lasted about 3 1/2 minutes then he laid quietly wanting to rest. He did crack a small smile at me afterwards. He was still resting and tired as the paramedics arrived.

We took him to JHU to be checked since this was a first for him. He was back to his normal self within about an hour or two and by lunch time he was demanding his food. LOL!

All blood gas and blood works came back fine. Electrolytes etc. were all fine too.

CT's showed slightly enlarged ventricles. (about 2x the size they should be) There is slightly more fluid in the brain than we would like to see in small multiple areas, but again.. he is not presenting any other signs of hydrocephalus at all. So this is still a good baseline to have. There is also a small pocket of fluid that is bigger than it should be in the back of the brain up higher (not at the base of the brain, but the Neuro doesn't think this is an issue)

So for now, we have agreed to do an EEG, and keep an eye to see if he has another seizure before doing any further tests or treatments. Being an MPS child he feels the odds are 60 – 70 percent chance of this happening again. ?? I’m not so sure yet.

We have several scenarios to look at. The first one being, can his ventricles be enlarged still from possible old hydrocephalus when he was younger and undiagnosed. I would bet my life that he had hydro when he was younger for several years and this is what started his mental deterioration. We think this is possible. Even the neuro feels that is is possible. He says the ventricles don’t always change back either. (Jesse also very minimal atrophy or storage in the brain according to the CT's) Another scenario involves one of the supplements he has been on for quite some time. He takes one called Vinpocetine. He has been taking 5mg. for well over a year. We increased it to 10 mgs last Fall, then another 10mg in the evening in June this year. This is still well below the dose for a normal person, but as we all know MPS children react much differently than normal children. Well this particular supplement does dialate blood vessels in the brain to improve cognitive function by increasing CSF flow also. For most people this would be good, and if Jesse had more storage in the brain it might be good too. We have now stopped this supplement in case it is causing his ventricles to increase too much?? It’s a guessing game, but for me and all the research I do, and knowing that all Jesse’s vitamins, minerals, amino’s and every other blood work up possible last month is in normal and in good ranges, this makes excellent sense to me. It is also possible that this supplement provided too many excitotoxins in his brain that day.

I have emailed the whole scenario to another well respected neuro to get his opinion as well.
*His answer came in late Friday night:
"In regards to your question on the enlarged ventricles that is not at all
uncommon in an older child with MPS III and does not necessarily represent
hydrocephalus. Since he has not had a significant loss of mental status
recently it is unlikely he is symptomatic at this point.".
Of course if he should show any signs of mental deterioration or physical, we would go in for an LP immediately.

Anyway, I am doing fine, just rearranged my next 2 weeks for a while... HAHA!! Because now I can't leave Jesse alone with my mom, I don’t want her to have to handle something like this alone. She is not a young person anymore, and I saw how upset she was when it happened while I was here. It had to have been scary for her to watch. Jesse is doing well and back to his old self. PRAISE GOD FOR A FULL RECOVERY!! He was running with the football game later that same night, and playing outside as usual most of Friday. He is laughing, smiling, running and babbling. Fortunately Jesse did not lose any of his abilities through this episode. By the way ambulance rides are not very smooth. I think the trailer my horses rode in all those years were smoother, LOL!

Thanks again for checking in on us, and praying!! I will keep you posted on any future findings.

I found a little poem the other day and how perfect for how I try to live each day of life. So here it is, I wanted to share it with you!

Happy Heart

To make life more understanding
It takes a happy heart
Living life to it's fullest
Each day a brand new start.

It takes a strong attitude
When tribulations come our way
Finding courage to carry on
Taking the time to pray.

Life is what we make it
The short time we are here
Start each day with a happy heart
And throw away the fear.

Do the best that you can
Live one day at a time
Be loyal to your family and friends
Your life will be just fine





2 Corinthians3:5-6 "We are not sufficient of ourselves to think of anything as being from ourselves, but our sufficiency is from God. He has made us sufficient as ministers of the new covenant, not of the letter but of the Spirit; for the letter kills, but the Spirit gives life"




Three new photo albums added a few weeks ago in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos

All of Jesse's annual tests results are in!

Echocardiogram- Unchanged and stable!! It is still the same as the past two years!

Blood work - CBC'S, CMP's, Vitamins, minerals, Amino Acids, Thyroid, etc.You name it, we most likely tested for it- All were excellent in normal ranges EXCEPT FOR ZINC. Even though we supplement for it already we need to add wee bit more.

MRI reseults- See results below near the lower part of this page!

Good day to all our friends and visitors,
Jesse is now home for the next three weeks. Summer session at school has finished at school. Next Saturday we will be getting together with some other MPS families for swimming, eating, and social time. We are looking forward to that! I have been training one day a week with my sister for medical billing. It seems I may have to start working full time this fall in order to meet our household expenses and pay off debts accumalted from vitamins and supplements and some foods too. (the two years that my hubby was unemployed a while back, really hurt the financial situation here. we've calculated on his current income this past year what we have and don't have income wise, and due to the past debt we just can't get ahead. If we could pay off the incurred debt, those dang finance charges keep making it grow, we would okay with the present income. (((head banging guy here))) So come Fall, I need to re-evaluate, babysitting care for Jesse, how much money can I make, and can we do this financially, and make it worth while for me to leave the home for that many hours a day and place Jesse in someone else's care??? Something I am not looking forward too to say the least!
We got this new soft tether ball at Target, THANKS to Stacey, Lucas's mom. It took Jesse a little bit of time to get used to it, because it goes so much easier than the hard one he has. But he finally found the rhythm with this lighter, softer ball.



We finally have medical insurance for Jesse as of July 1st, 2007. DDA is paying for private insurance, as well as diapers and a few other things that will definitely help. This Fall we will still push onward for the medical waiver. Our wonderful governor (not) is cutting the budget big time in schools and education as well as the Department of Health and Mental Hygiene. This is going to hurt the special needs community immensely in our state.

Jesse had his genetics appointment on July 9th, as well as our annual echocardiogram. Jesse actually went to sleep during the echo LOL! All went very well. Our geneticist, Dr. Hamosh thinks Jesse looks fabulous and there wasn’t much she could say, other than WOW… he looks great! His range of motion is wonderful, no contractures of any of his digits and so on. She asked if I had any questions. So I asked her about the possibility of getting an MRI on Jesse in the sitting position. He is much bigger now. (5 foor 1 inch and 119 pounds) My concern is that with his chest being so barreled and his back being so arched, (what they would refer to as a mild reversal of the lumbar lordosis) I wanted to be sure that there wasn’t any cord compression happening or disk bulging even slightly. Here is a picture of the machine I found that I could get one done him for him without sedating him. He did very well in this machine. When I called them, they gave me an appointment just 2 days from when I called!! That’s great service. We also had the full report later the same day, and I actually came home with a copy of all the films. We put a padded tension bar at his waist area and one also up at his forehead. They also put pads on each side of his shoulders to keep him from moving left and right with his body. I just held his head during scans to keep him from moving it left and right. I was very proud of him for sitting so well. They got 7 pages of scans with 12 –15 pictures on each page. Some scans lasted only 2 ½ minutes, then others were 6 –7 minutes. They seemed to take forever while I was holding his head in position. So it is a good resource to have. Okay the results of the scan are as follows.

Some very mild dessication and bulging from L1 –2 through L5-S1 levels mainly due to the reversal of the lumbar lordosis. There is also a very mild degree of canal narrowing at L3-4 and multi level foraminal stenosis. There is also moderate foraminal narrowing related to disk bulging L5-S1 level. There is no sign of cord compression or disk bulging badly enough to cause problems for him at this point. As he gets older and larger, if we see any gait problems, or signs of pain, we will at least have this baseline to work from. Praise God he doesn’t have anything going on that needs surgery or anything invasive at this time. I think will be seeing a orthopedist though to see about getting orthodics made to balance his gait a bit more, as he tends to walk with most of his weight on the outer edges of his feet. This is not good for his hips or knees. We know his hips and knees are fine, as we do have them x-rayed bi- annually. We did that last Fall.

We also had blood draws done to check all his general blood work ups, as well as Vitamin levels, Mineral levels, amino acid levels, and thyroid too. (12 tubes in all) Jesse was mad at us for that, but he didn’t cry. He just yelled at us when they first stuck him with the butterfly. Then he just watched quietly, then after they took the needle out, he yelled at us some more. We do these annually also to see if I need to adjust any of his supplements. Tests results are all in as of August 2nd. See results above and below.
Meanwhile I will making a routine dental appointment for cleaning and a general check up, and also eye exam.

Thanks again for checking in! May God Bless You!

I thought I would put some of these back up since a few people asked about the pics on the last update.



.
(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."



Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Wednesday, June 27, 2007 5:50 PM CDT

Three new photo albums added this week in the Taormino Family photos section, stop in and check them out when you have time*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos

Good day to all our friends and visitors,
Jesse will be returning to school on Monday July 2nd for the Summer session. It’s been so nice having him home with me these past two weeks. He has been quite happy and having a good time here doing things with me everyday!
Here are some pictures from the Spring season at school and one or two form home as well. More pics are in the Family Photo Album. To see captions and stop the slide show, just place your mouse pointer on top of the picture.


We went to Washington DC last Saturday to meet up with a friend that was here from California. She has two Sanfilippo Children of her own. She was here with her 8th grade school class for 6 days. (not with her own children) It was great going down to Union Station and having lunch with her, and getting time to chat. Jesse did very well on our day out. We also went touring around the Mall in DC, as it was a weekend of festivals with Folk Life Celebrations. There are more photos from DC in our Family photo album.

Here we are in Union Station

Good news on my feet and back, they are both doing pretty well. My feet still hurt but not nearly as bad since getting the orthodics. I am taking less ibuprofren also. I am now working at losing a little extra weight. I do have about 20 –30 extra pounds I could get rid of. LOL!

We are still battling insurance issues. They don’t want to grant Jesse the Medical Waiver. So we have now gone to the next step of contacting our Congressman about this and also the Maryland Law Center for Disabilities. Instead DDA is offering to pay for private insurance (but not copays or deductibles) and some dollars for diapers and 16 hours of childcare a month. Don’t think I am ungrateful for that, but the insurance that Jesse is entitled to here in Maryland (that he has had for the past 5 years) serves us well beyond that. I will not give up until he is reinstated in that same program again. The program he was in, is for people with Rare and Expensive Case Management. It will actually cost the state system less by reinstating him in the previous program he had been in. (as he does qualify 100 percent) We used to qualify by income level, we now are $5,000 over that level and the only way to get back into the program is through a medical waiver.

Proverbs21:1 says "The king's heart is in the hand of the LORD;
he directs it like a watercourse wherever he pleases!"

In this case I am praying that my Lord and King Jesus Christ take charge of the person’s heart who makes these decisions and turns it in Jesse’s favor! Please agree with me in prayer for this!





(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."



Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Tuesday, June 19, 2007 6:52 AM CDT

3 new photo albums added this week! Spring School activities, Florida Vacation, and DC with Sharon and us! Stop by the photo link and check them out! *** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos

Good day to all our friends and visitors,
Jesse is now home from school for two weeks! He is loving it too! I am keeping him busy with activities here at home and doing little mini outings each day. Some are just to do grocery shopping or walks through the neighborhood, and if it very hot, we do a trip to the air conditioned mall or Toys R US for a stroll. Jesse has been doing wonderfully. Physically he is still walking and running about everywhere with ease, and still trying to talk to us constantly through his style of babble. He is still doing most of the BM’s on the potty too! He also complains quite intently when he has a wet diaper.

Jesse will be going to the extended school year session this year. His favorite aide of nearly 4 years (who is now a TA) will be in Jesse’s summer class with him, and working as his aide as well as a TA. He will also have a new teacher for the summer session. Then come fall, they will most likely hire a new aide to be trained for him. Of course he / she will be trained by the one who knows him best at school. His old aide of almost 4 years!

I have been having some issues with my feet and right leg and lower back. (HAHA) I’m sure most of you can guess. Anyway, the diagnosis after an MRI and some other testing is that I have a slight bulge at L-5 just right of the center line, pressing on a nerve. I also have “plantar fasciitis”. I do believe this causing more pain than my back is. . Here is a link to info about this condition. Plantar Fasciitis I have purchased othodics for my shoes, and doing exercises with my feet, and taking ibuprofen at bedtime. This has helped a lot. There is still pain, but at least I can walk again. I actually was able to walk 2 –3 blocks this past weekend with Jesse instead of only the one block. The doc wants me to stop lifting and bending for a while to give the disc a chance to relax since it is not too bad yet. Well that is a hard thing to do with an MPS child. Jesse ambulates well, but transitions from sitting in a bathtub to standing up can be hard and also getting in and out of a car is hard for him. He is not sure of backing in to sit down, and he is too big to climb in and spin around to sit down like he did when he was little. We finally got a hand held showerhead for the shower, and I got the bath chair last year. I just hadn’t used it because we didn’t have the hand held showerhead. (Money was tight and it was not a priority yet) Well we have it now, and WOW what a difference on getting Jesse in and out the tub. He just steps in, holds on to the grab bar and sits down on his chair. I only have to get down on the floor to wash his feet and lower legs. The rest of him I can bathe by sitting on the edge of the tub. When it is time to stand up, it is easy for him, because is already half way up sitting in his chair, and he grabs the grab bar and stands right up. I hold his hand and he can step over the edge of the tub to step out. So I have eliminated the lifting during bathing for now. This has been a big help since Jesse weighs 120 pounds now. (Jack cannot help with lifting, he has had 4 back surgeries in the past, and as long as we keep him in guidelines of no more than 10 - 20 lbs he does well)

We are still battling insurance issues. They don’t want to grant Jesse the Medical Waiver. So we have now gone to the next step of contacting our Congressman about this and also the Maryland Law Center for Disabilities. Instead DDA is offering to pay for private insurance (but not copays or deductibles) and some dollars for diapers and 16 hours of childcare a month. Don’t think I am ungrateful for that, but the insurance that Jesse is entitled to here in Maryland (that he has had for the past 5 years) serves us well beyond that. I will not give up until he is reinstated in that same program again. The program he was in, is for people with Rare and Expensive Case Management. It will actually cost the state system less by reinstating him in the previous program he had been in. (as he does qualify 100 percent) We used to qualify by income level, we now are $5,000 over that level and the only way to get back into the program is through a medical waiver.

Proverbs21:1 says "The king's heart is in the hand of the LORD;
he directs it like a watercourse wherever he pleases!"

In this case I am praying that my Lord and King Jesus Christ take charge of the person’s heart who makes these decisions and turns it in Jesse’s favor! Please agree with me in prayer for this!



In reference to the MPS gathering we went to in Baltimore a few weeks ago. It was a good gathering. We met some new people too. DR. Laura Tosi was very good with her presentation on orthopedic issues and growing good quality and strong bones for our kids. The food was excellent too. Unfortunately the whole thing was interrupted by a fire alarm. Well we were all on the 5th floor. (couldn’t find the stairs and elevators were not to be used.) Where we were is on the fifth floor and overlooks a shopping mall of four floors. There are escalators going down from the fifth floor on down to each floor. So we attempted to do this. It was quite scary at times, but we managed to do it. Jackie’s husband took Jesse’s stroller for me, while I dealt with Jesse. Jesse does well going up escalators, but not well down. His depth perception is off. Well he is holding the handrail (which is moving) but he will not step on the stairs, I am on the stairs continuously walking up the stairs holding his other hand trying to get him to step on the first step. He is leaning forward because his hand and arm are going with the handrail, but his body is not. What a site to see. Finally I get him to step on and we get to the next level, only to have to do this 2 more times. REPEAT AGAIN!!! Well we got to the fourth escalator and THANK YOU.. they finally turned off the moving stairs and we were able to walk down them. This is much easier for Jesse he can do the stair walking!! We get to the exit of the building and the alarm stops and we are told we can return to the building. HAHA! It turns out a that a construction worker accidently hit one of the sprinkler heads and knocked the tip off which caused it to go off and set the alarm off. All I can say is it was a good thing that there was no sign of fire or smoke, because if there had been, Jesse and I probably would have been laying on the escalator stampeded by 1200 or so people trying to get out of the building!! I really think that these big hotels need a ramp system like the stadiums have to help get handicapped people out in emergencies. Imagine if he couldn’t walk at all. I can’t imagine trying to take a 120 lb. person (or heavier for that matter) down 4 or 5 flights of steps in a wheelchair or medical stroller. Thank God he can walk, and there was not a real fire!! We did return to the meeting area and many of us parents sat around and just had a wonderful time socializing afterwards. A few of us then took a walk around the Inner Harbor with the kids as well. All in all it was a good day!


(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."



Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Wednesday, June 6, 2007 6:21 PM CDT

*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos

Good day to all our friends and visitors,
There’s not much new to report right now. Jesse has been doing wonderfully. Physically he is still walking and running about everywhere with ease, and still trying to talk to us constantly through his style of babble. He is still doing most of the BM’s on the potty too!

We are still battling insurance issues. They don’t want to grant Jesse the Medical Waiver. So we have now gone to the next step of contacting our Congressman about this and also the Maryland Law Center for Disabilities. Instead they are offering a secondary insurance (but not copays or deductibles) and some dollars for diapers and 16 hours of childcare a month. Don’t think I am ungrateful for that, but the insurance that Jesse is entitled to here in Maryland (that he has had for the past 5 years) serves us well beyond that. I will not give up until he is reinstated in that same program again. The program he was in, is for people with Rare and Expensive Case Management. It will actually cost the state system less by reinstating him in the previous program he had been in. (as he does qualify 100

Proverbs21:1 says "The king's heart is in the hand of the LORD;
he directs it like a watercourse wherever he pleases!"

In this case I am praying that my Lord and King Jesus Christ take charge of the persons heart who makes these decisions and turns it in Jesse favor! Please agree with me in prayer for this!



Anyway onto a better topic. This Saturday we go to an MPS Family gathering here in Baltimore. Children’s National Medical Center is sponsoring it. We will get to see Dr. Muenzer from Duke, and Dr Laura Tosi, who is a pediatric orthopedist. There will also be other guests speakers there with related info about MPS.

School is coming to an end in mid June. We still do not what is happening for summer yet. Hopefully we will know more in the next week.


(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."



Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Friday, May 18, 2007 7:52 AM CDT

*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos



Good day to all our friends and visitors, A new update below in the Insurance issues section near bottom of the page!! We took a nice trip to Florida, just Jesse and I. We visited my sister and her husband and daughter for our birthdays. My birthday was April 30, and Jesse’s was May 2nd and my sister’s is also May 2nd. We have been celebrating together for many years. ( pictures are posted above ) Our flights went very well and so did each day at the parks. We also got to have lunch and a show with another MPS family that was there for a “Make Wish Trip”. We enjoyed meeting up with Jackie and Mykenos and all the family. Jesse also slept well each night too. So the trip was a total pleasure!

Jesse also participated in Special Olympics just before we left for Disney. He participated in the Softball throw and received a silver medal. Here are pictures below from the Olympics.


The weekend before all the things talked about above, Jack and I got to get away for a 3 ½ day weekend to CBN in Virginia Beach, VA. This was truly a blessing for both us. We have not been away alone since Jesse was 3 years old. See the wonderful picture of Jack and I below.
Thank God things are slowing down a little for the week. I need to catch up on house work and laundry.

I have recently purchased some school supplies with the help of my mom so I can start teaching Jesse here at home more. I have not been happy with what's been happening with his speech at school. This year he has been in a class with mostly non verbal children, then his hearing aides were not being utilized either. This year has been a tough year for advancing in school for Jesse. Hopefully next years placement will be suited for his learning advancement. During the break I started using teaching tools for teaching adults with Onset Adult Apraxia, and Child Apraxia. Here is an article about speech loss due to stroke which is quite interesting. Stroke and Speech. I am trying to incorporate this and several other techniques as well into Jesse's learning process. Jesse had so much speech at one time, and now has a few words left. He was actually gaining ground until this past fall when school started. Here is another good article about Speech and the Brain Speech and the Brain. Then here is a brief article about Childhood Apraxia of Speech. Childhood Apraxia of Speech I have purchased teaching manuals and books for therapists so I can learn as much as possible to help Jesse regain speech if it is possible. I think that possibly retraining him to learn speech thorugh using the right side of his brain may be possible. (Speech and language usually comes from the left side. Read my second link above to learn more about this.) Okay enough about speech and brain. This will be along road I think, but I am willing to pursue every way possible. Jesse is also doing well with the BM's in the potty. This all started about 6 weeks after starting the L-Carnosine. This is truly a blessing!! No stinky diapers, only wet ones. (you can read about L- Carnosine in one of my previous journal entries)

Updated May 17th- The Insurance waiver issues are now in the paper work stages. (still) Hopefully these will be concluded by late April. *** Well still no approval yet! It seens this state is trying to exclude children unless critical at the time. Well that is too late for kids like ours. We need preventive medicine as well. I have not given up hope. Jesse qualifies in two of the possible four ways to qualify. He only needs one to qualify. Don't they realize that one episode of a heart problem could put him critical overnight. God forbid something like that happen with no insurance. If we have to pay for insurance for Jesse and have buy diapers, pay co pays etc., this would put us back in poverty level or eventually bankruptancy for sure. Something we have tried to so hard to get out of with only one income, since I stopped working full time some years after Jesse's dx. Maybe they prefer I institutionlalize him.(NOT!!) This would cost the state much more money than granting him the waiver. Fortunately Jesse has been very healthy for the most part, so doctor visits have been minimal. We do have all of our annual appointments coming up starting in July. So we will need this insurance by that time. Please pray that he gets the waiver approved by DDA. I am not interested in all the other services that a waiver provides anytime soon. Mainly we need it for the eligibility it gives Jesse for medical insurance, since we are now out of poverty level and don't qualify by income standards. (we barely don't qualify, it's like they force into poverty to receive benefits.. that's no fun or incentive to better your life) We need the insurance for our yearly follow-ups and ocassional doctor visits. He has had MA /REM all of his life pretty much, and never once have we used it unnecessarily. We stay away from docotrs offices as much as possible.

Proverbs21:1 says "The king's heart is in the hand of the LORD;
he directs it like a watercourse wherever he pleases!" In this case I am praying that my Lord and King Jesus Christ take charge of the persons heart who makes these decisions and turns it in Jesse favor! Please agree with me in prayer for this!

Jack and I at CBN



(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."



Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Monday, April 16, 2007 4:13 PM CDT

*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos



Good day to all our friends and visitors,
I just wanted to give a little update! Jesse had a wonderful week off school for the Easter break. He was happy and active doing things with me everyday. We did everything from grocery shopping to yard work together and of course lots of walks and playing on his equipment in the yard. We didn't go anywhere special, just had fun at home and in the nearby neighborhood. I have recently purchased some school supplies with the help of my mom so I can start teaching Jesse here at home. I have not been happy with what's been happening with his speech at school. (as well as other things too) This year he has been in a class with all non verbal children, then his hearing aides were not being utilized either. I won't say anymore than that, but I have not been happy with this years placement at all. During the break I started using teaching tools for teaching adults with Onset Adult Apraxia, and Child Apraxia. Here is an article about speech loss due to stroke which is quite interesting. Stroke and Speech. I am trying to incorporate this and several other techniques as well into Jesse's learning process. Jesse had so much speech at one time, and now has a few words left. He was actually gaining ground until this past fall when school started. Here is another good article about Speech and the Brain Speech and the Brain. Then here is a brief article about Childhood Apraxia of Speech. Childhood Apraxia of Speech I have purchased teaching manuals and books for therapists so I can learn as much as possible to help Jesse regain speech if it is possible. I think that possibly retraining him to learn speech thorugh using the right side of his brain may be possible. (Speech and language usually comes from the left side. Read my second link above to learn more about this.) Okay enough about speech and brain. This will be along road I think, but I am willing to pursue every way possible. Jesse is also doing well with the BM's in the potty. This all started about 6 weeks after starting the L-Carnosine. This is truly a blessing!! No stinky diapers, only wet ones. (you can read about L- Carnosine in one of my previous journal entries)

On another topic, Jesse has Special Olympics next week. I will be there for one of the days of it, but the second day his dad and I get to leave for a 3 1/2 day getaway alone. We have not been away alone since Jesse was 3 years old. So we are looking forward to it. It is an all expenses paid trip, including meals. We only need to provide gas to and from our destination. Then the following week after we return home, Jesse and I will be flying to Florida for our birthdays. Yippee!! We will be celebrating with my sister whose birthday is the same as Jesse's, and 2 days after mine. We will be fortunate enough to go to the parks free of charge for two days as well. (as my sister works for Disney) So the next 3 weeks will be quite busy! Please pray for good weather for all our trips. This April has actually been the coldest on record here in nearly 100 years. (and I thought Spring had arrived, LOL!)

The Insurance waiver issues are now in the paper work stages. (still) Hopefully these will be concluded by late April. Fortunately Jesse has been very healthy for the most part, so doctor visits have been minimal. We do have all of our annual appointments coming up starting in June. So we will need this insurance by that time. We were also blessed by one the organizations that gives financial support for MPS families when in need. They gave us enough funds to get us through May17 with the diapers. Praise God for that blesssing!!

Just a quick update 4-30-07
Jack and I had a wonderful 3 1/2 days away at CBN in Virginia Beach. It was very refreshing and relaxing too! Weds. Jesse and I leave to celebrate Jesse, my sister's and my birthday in Florida. We will also be visiting Disney while we are there. When I return next week, I will post some pictures from both outtings! Meanwhile here is one of Jack at at CBN relaxing before dinner. What a blessing this weekend was!




(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."



Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Sunday, April 1, 2007 6:13 PM CDT

*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos



Good day to all our friends and visitors,
It seems that Spring has really arrived here. The weather has been fantastic for us lately. We've been able to get outside a lot with Jesse's bike and for long walks. I look at the Jesse lately, and see how grown up he is becoming. Not only is he still doing BM's in the potty, but he is looking more and more like a teenager too. I feel so blessed to still have him here with us and so healthy too! The Insurance waiver issues are now in the paper work stages. Hopefully these will be concluded by late April. Fortunately Jesse has been very healthy for the most part, so doctor visits have been minimal. We do have all of our annual appointments coming up starting in June. So we will need this insurance by that time. We were also blessed by one the organizations that does financial support for MPS families, in the way of medical needs, therapuetic etc. that aren't covered by insurance. They gave us enough funds to get us through May17 with the diapers. Praise God for that blesssing!!


I will leave the slide show of the Washington DC MPS family conference and Scientific Conference up for a few more weeks! We had a wonderful time in DC that week in spite cold and snowy weather.

2007 MPS Conference


(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."



Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Monday, March 12, 2007 9:32 AM CDT

*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos





Good day to all our friends and visitors,
Well the insurance issue is still a work in progress, but no coverage yet. At least the major paper work has been filed, but will most likely come back for adjusting and have to go back again. We recently started Jesse on another new supplement. Yes, another supplement. I will not stop trying to get speech and cognitive improvement back as long as he is alive! It’s called L- Carnosine, an amino acid. Carnosine information Read the link for more info on the supplement. I do have wonderful news to report as of March 2nd. Jesse is now complaining and yelling at us when he needs to have a BM. Since Friday March 2nd we have been fortunate to have all BM’s in the potty. Hopefully this will continue. I need to educate the school and other caretakers when we have them (rarely) how he reacts when he needs to go, this way they can have the same success when he is with them.

Well we had a wonderful time at the MPS Conference and the Scientific Conference too. We got to see many families again. Usually the MPS overview each year is somewhat repetition for those who go yearly, but I must say that Dr. Kelley Moreman who did the overview this year was exceptional. I think the feeling was mutual by everyone. All the speakers were very informative, and social. We also did our visit to Capitol Hill at the Russell Senate Bldg. Fortunately Senator Mikulski sent a rep. for us to speak with. She has always been a big supporter for NIH and funding research. Hopefully we left even more of an impact on her staff about the importance of it. I was also totally surprised with a very nice award this year (a beautiful plaque) along with a few other members. They gave out "Director Awards" in recognition of “dedication of time and expertise” given to MPS. I was in shock, as I do not do what I do for recognition, but only to help Jesse, other parents and their children as well. I feel that my season in life right now is centered around God, Family and MPS. Jack gets to do the career thing. At one time in life it was God, Family and the other things of interest. But for now and most likely for a long time to come, I see MPS as a very long season in life. The Scientific Confeence was really right up my alley. There is so much good research going on, especially in the way of CNS. When they start talking brain, my ears open!! Anyway here a few pictures, I didn’t take as manyas I intended. I was so engulfed in talking to families and friends, Scientists and doctors. But what I did take are right here.

2007 MPS Conference
The entire conference was wonderful this year as usual, just extra nice because of the Scientific Part. I am a little bummed about June 2008 conference though. It is all the way in Vancouver BC. I have already checked flight prices and there is no way I can afford to make that trip with Jesse or even alone for that matter. Flights alone were $650 and higher per person round trip. So I may have to stay home next year. I would need to take Jack with me that far if I took Jesse. So approx. $2000.00 in airfare alone is way out of line for our income level. Oh well. There will be another conference in 2009. It just seems like such a long time from now.


Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!


(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Thursday, February 22, 2007 8:09 PM CST

*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos



Good day to all our friends and visitors,
Well the insurance issue remains the same, still a work in progress, but no coverage yet. We recently started Jesse on another new supplement. Yes, another supplement. I will not stop trying to get speech and cognitive improvement back as long as he is alive! It’s L- Carnosine. Carnosine information There have been many studies done over the past several years with Autism and this amino acid. The studies have been very interesting as it works on the frontal lobe of the brain. In Autistic kids, they have seen socialization improved immensely, as well as cognitive ability and language. So after speaking with a few doctor friends, we are giving a it try. We started on January 26. We worked him up gradually to the dose of 400mgs twice a day. He did well with 250mgs a day, then 250mgs twice a day, then 400mgs in the am and 250mgs in the pm. Once we got to 400msg and 400mgs. it sent him over the edge into temper and agitation. Too much brain activity, more than he could handle. So we backed it down to 250 mgs and 250 mgs. (this is where he seemed happiest and not agitated, yet more intellectual so to speak) and he is doing quite well. I like seeing him acting more like a normal kid coming into his teens. But the attitude sometimes is deliberately defiant. He still does not speak lots of clear words, but he surely does understand a lot more that is going on around him. He especially understands how to manipulate a person now and voice his opinion. For instance, we went for a nice walk last week. We were singing and babbling the whole way, and quite happy. Upon arriving back at own yard, I told him, “we’re home now”. He started with a tantrum of yelling loudly and angrily and wanted to go past our house and not in the yard. So I proceeded to the yard with him anyway and allowed him to roam in the yard and not go inside. He then became happy again. Jesse would much rather be outside than inside on most days. Is this brain activity a good thing?? or not good?? I think as long as the brain is thinking and reasoning, it is a good thing. Better then him sitting around with a blank stare like we used to see him doing 2 years ago for much of the evening. So we shall continue the L-Carnosine. You can find much more about studies on the web, by searching for Dr. Chez and Carnosine or Autsim.

March 4th is the start of the Annual National MPS Conference. This year it is being held in Washington D.C. Jesse and I will be driving there and staying for the MPS conference as well as the Scientific Conference too. It should be a wonderful time with other MPS friends and family! I will definitely take a few pictures and post them when we return.

Jesse is still enjoying his Hemi –Sync CD’s at night before bed. We are still getting by most nights without giving melatonin. Basically Jesse is a drug free child and sleeps every night 8 - 9 hours. We only used melatonin in the past to get him to shut his eyes, LOL! Praise the Lord!!
(put you mouse cursor on the picture below to see caption and pause the slide show)




Here are a few pics of Jesse throughout the year I have saved! (the one is the straw hat is when he was 5 years old, I just had to add that one) I pray that you and your family have the health, joy, peace, and the prosperity that only Jesus Christ can bring!




Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!


.(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."

May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Tuesday, January 23, 2007 6:28 PM CST

*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos

Good day to all our friends and visitors,
It seems old man winter has finally set in here. We have been unseasonably warm until the past week. 2007 has started off okay health wise. Even though Jack has gotten sick, Jesse had a fever for 2 days. It left as fast as it came. (most likely because of all the extra Vitamin C and Collodial Silver I added as soon as he got the fever.) We are praying that Jesse does not get sick anytime soon. He is without health insurance right now. It’s a long story, but basically he has had MA (medical assistance) since 2001. He received a medical waiver back in 2001. Unfortunately our original case worker has retired and no one is sure which agency originally granted the passage to waiver. (we have several agencies it could have went through) The problem happened in 2004 when my husband was unemployed and we filed for SSI to help us out. Someone in DSS changed our coding in the system from the coding for the waiver to a new coding for “needy and poor”??? The waiver coding should have been left as waiver also. Well my husband has been working for several years now, and has built up the income level a little each year. So now we disqualify for SSI, which is rightly so. No problem!! Well they also wiped out our medical coverage for Jesse because we make too much money. DUH!!! Jesse was not in MA because of $$$. So after fighting and calling all the agencies and caseworkers, there is nothing we can do but go through the whole qualification process again. This could take 3 –6 months. My case manager is trying to push it through faster, but anyone who knows DDA, knows they do things in their own time. Meanwhile Jesse is uninsured. We are now going to have to pay for diapers as well as any medical bills. It is tough enough spending over $200 a month on supplements for him, but now it may be another $205 for diapers each month too if we can’t get this through quickly. God forbid he get sick or anything happens to him. He is generally pretty healthy, but everyone around us is getting sick this year. More so than usual. We tried to get medical coverage for him after the holiday, but since he has not been covered for over 30 days, (he was cut off on Dec. 1st, 2006) we couldn’t find anything affordable. (only one for $426.00 a month, there was no way we could afford that) I choose not to get angry over this, but it is a very big inconvienence for now, and consumes valuable time as well.


Anyway on to a better topic, God has been good! He is taking good care us in spite of this interruption of Jesse’s medical coverage. Work is slow for Jack this time of year, but a little better than this time last year. We are getting by day to day at least. Jesse is enjoying his Hemi-sync CD’s a lot. Every night at about 9:30pm, Jesse is ready for bed. I go in and tuck him in, we say some prayers, then put on one of his CD’s and hook up the headphones. He will now allow the headphones to stay on pretty much until the CD is done. They are usually 45 minutes to 70 minute CD’s. He is also going to sleep on most nights without his melatonin. He was only 1.5 mgs anyway, so he wasn’t getting that much to start with.

(put you mouse cursor on the picture below to see caption and pause the slide show)



Also coming up the 1st week of March we have our Annual MPS conference. This year it will be in Washington D.C. Jesse and I will be able to drive to this one instead of flying. I am really looking forward to this. It is a great time to see the friends and MPS families that I communicate with all year long. There’s nothing like MPS family. Everyone understands each other and their children so well.

Here are a few pics of Jesse throughout the year I have saved! (the one is the straw hat is when he was 5 years old, I just had to add that one) I pray that you and your family have the health, joy, peace, and the prosperity that only Jesus Christ can bring!



Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!


.(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."

That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you and your family!
Patty and Jesse

---

Saturday, December 30, 2006 3:23 PM CST

***Quick update January 14th - All is well here, just very busy still. Jesse had a fever for 2 days this past week but no other symptoms. It went away as fast as it came. As long as he had motrin, he ate well, slept well, and played as usual. Praise God it was nothing major! There are many virus's going around at school right now that are much worse! I will hopefully update the full page sometime next week with more bicycle pictures too. It was so warm out last weekend we actually got to some bike riding!
I pray all is well with you also! Thanks for checking in!

*** PICTURES From many Taormino and MPS gatherings and events can be seen in the Taormino Photo album at this link or the link at the bottom of the page!. Photos

Wishes For 2007

If I had just one wish
I know what it would be
I'd tell my wonderful friends
Just what they mean to me.

The great year 2006
Has very quickly past
And now we face 2007
That's almost here at last.


One thing I'd really like to do
Is say thank you my friend
For all the special greetings
That you always send.

I wish you days that are merry
May your nights be starry and bright
I pray that the year 2007
For you will be just right.


Good day to all our friends and visitors,
Christmas has come and gone and now the New Year is upon us!. This past year has been a very good year for Jesse and for us as a family. We have been blessed with good health for Jesse and very few problems this year. Jesse continues to be drug/medication free and only taking lots of nutritional supplements as well as the genistein. The genistein has really stopped regression as far as we can see. He is actually improving in some skills. This is totally unheard of in Sanfilippo children! Now we pray for brain recovery and motor skill recovery in full! We tried a therapy called Craniosacral massage which seemed to help at times, but nothing consistent happened. We heard a word here and there, and then gone again. The last two treatments he became very agitated for 5 –7 days afterwards. So we have discontinued this therapy for now. It’s not to say that we won’t revisit this therapy in the future though. We have now started something else. It is a listening of CD’s and tapes with Hemi-sync sounds in them. This can alter brainwaves to a desireable state. Here is a link if you’d like to read more about it. Hemi-Sync process So far I can say that Jesse is enjoying it, but this too is a process of time.

The biggest two adverse things that happened this year, were a tooth being pulled, which was quite easy actually, and one virus that lasted a week with high fever. Not a bad year in the life of MPS!! PRAISE GOD for that! Over the past year. Jesse has received several nice things that have improved the quality of his life. Thanks to the help of the MPS Society, The ARC of Baltimore, and friends who helped raise funds to contribute back the society for the family support program. Jesse got his therapeutic bike last April. Jesse also got a very safe and accessible play system this year. Dad got a boat this year to fish the Chesapeake Bay with. (he certainly deserves something now and again, he works hard at keeping a steady income coming in for our family. He is also a very loving dad and husband) We have eaten some nice fresh fish this year from the bay as a result of the boat. As for me, I haven’t wanted or needed much of anything. Just the love and support of family and good friends! (of course a little getaway time too, LOL! This is refreshing for the soul in this life of MPS, constantly taking care of someone 24-7 as I would myself.)

Here are few pics of Jesse throughout the year I have saved!(the one is the straw hat is when he was 5 years old, I just had to add that one) I pray that you and your family have the health, joy, peace, and the prosperity that only Jesus Christ can bring! The holiday for us is more about celebrating the love and forgiveness, the strength and the joy that only our savior can provide!



Please keep MPS families and friends in prayer this year, As prayer is a powerful weapon!


.(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."

That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Hugs and many blessings to you all this wonderful New Year!
Patty and Jesse

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Sunday, December 10, 2006 12:43 AM CST

Dec. 29th- In case I don't get to update before New Years Eve. I wanted to let everyone know that we are healthy and happy here, and that Christmas was wonderful in every way! Praise God for all things! I pray that you have a blessed 2007. If you go out to celebrate, please be careful driving to and from.
Hugs and love,
Patty, Jack and Jesse

*** PICTURES From our Fall gathering at the Hardy home in New Jersey are posted. Photos There are pictures from our summer gathering at the Hall’s home from August also posted. Jesse and Julie at Hershey Park Sunday are posted in the web shots album linked at the bottom of this page too. His play equipment pictures are posted! Other pictures include his new bedroom last winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page!

Wishes For 2007

If I had just one wish
I know what it would be
I'd tell my wonderful friends
Just what they mean to me.

The great year 2006
Has very quickly past
And now we face 2007
That's almost here at last.


One thing I'd really like to do
Is say thank you my friend
For all the special greetings
That you always send.

I wish you days that are merry
May your nights be starry and bright
I pray that the year 2007
For you will be just right.


Good day to all our friends and visitors,
Well Thanksgiving has come and gone and now we have the Christmas Holiday to prepare for. This year has been a very good year for Jesse and for us as a family. We have been blessed with good health for Jesse and very few problems this year. Jesse continues to be drug/medication free and only taking lots of nutritonal supplements and genistein. The genistein has really stopped regression as far as we can see. He is actually improving in some skills. This is totally unheard of in Sanfilippo children! Now we pray for brain recovery and motor skill recovery in full! The biggest two adverse things that happened this year, were a tooth being pulled, which was quite easy actually, and one virus that lasted a week with high fever. Not a bad year in the life of MPS!! PRAISE GOD for that! Over the past year. Jesse has received several nice things that have improved the quality of his life. Thanks to the help of the MPS Society and friends who helped raise funds to contribute back the society for the family support program, Jesse got his therapeutic bike last April. Jesse also got a very safe and accessible play system this year. Dad got a boat this year to fish the Chesapeake Bay with. (he certainly deserves something now and again, he works hard at keeping a steady income coming in for our family. He is also a very loving dad and husband) We have eaten some nice fresh fish this year from the bay as a result of the boat. As for me, I haven’t wanted or needed much of anything. Just the love and support of family and good friends! (of course a little getaway time too, LOL! This is refreshing for the soul in this life of MPS, constantly taking care of someone 24-7 as I would myself.)

Here are few pics of Jesse throughout the year I have saved! I pray that you and your family have the peace and joy of Christmas that only Jesus Christ can bring! The holiday for us is more about celebrating the love and forgiveness, the strength and the joy that only our savior can provide!



There have been several MSP families that lay heavy on my heart this year. It seems they just can’t get a break. One is a MPS II (Hunter’s Syndrome) Family and another is a Sanfilippo family (MPS III) These two families have spent more time in hospitals this past year than any family should have too. Please keep these families in prayer that their hearts will be turned to God, and that he will hear their prayers. Meanwhile I continue to pray for both of these families children daily. (as well as few others too)





~ The Wonder of Christmas ~

I love to watch my children's eyes
I love the way families pray
I love to hear the carols sung,
all for a special day.
I love to sense the joy and praise,
welling up in everyone
and I love to see the arms upraised
as we praise God's only Son.
So when you feel the spirit move,
and know within your heart,
that Jesus was born on Christmas day,
and He's that special part.
Say a prayer in your heart
thanking God for this day,
and soon you will see,
the wonder of Christmas will stay.

~© Carol Verge 2001~


Many of the Hunter Syndrome kids have started a new ERT treatment that was approved in August to help them with the physical problems of MPS. It will not be a cure, but it should give them a better quality of life. There can be some side effects for some of these kids that are rough on their system. I know of several children so far that are seeing wonderful results in just 3 – 4 weeks of treatments. We also know of a couple that are having reactions that are not good. So please keep these kids in prayer as they go about this new treatment for them.


(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."


That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will! We are so blessed as a family here. God does look out for us every day! Praise be to God for all that he does and has done!!

Hugs and many blessings to you all!
Patty and Jesse

---

Sunday, November 19, 2006 10:59 AM CST

*** PICTURES From our Fall gathering at the Hardy home in New Jersey are posted. Photos There are pictures from our summer gathering at the Hall’s home from August also posted. Jesse and Julie at Hershey Park Sunday are posted in the web shots album linked at the bottom of this page too. His play equipment pictures are posted! Other pictures include his new bedroom last winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page!

Good day to all our friends and visitors,
I guess there’s not a whole lot to report these past few weeks. It’s been a good three weeks. Jesse has been doing well in school. Bus schedules are running fairly well for the most part. (this can be a issue some days, but I have made up my mind not to let this upset me) . Tuesday this week, we will be having Thanksgiving Day lunch with Jesse's class. 7 students in all. The parents and the teachers and aides all make a dish to bring in and we all have lunch together for Thanksgiving. I get to make my mom’s famous “corn pudding”. I could eat the whole bowl myself, LOL! It will be a wonderful time as we reflect on the things we can be THANKFUL for!! We also will be celebrating Thanksgiving with my husband's family this year, then having dessert with my family.




Jesse had his fourth Craniosacral Massage . He sat wonderfully for this one, and she got to do the complete hour with only 2 minor interruptions of about 30 seconds each. That is real progress. Still no huge improvement, but we are seeing occasional words here and there, just not consistent yet. I have faith that this will improve. His potty issues seem to be improving. I need to be more aware of the times he wanders into the bathroom. Usually he has a BM just afterwards. If I see him, and put him the potty after wandering in there, he will usually go in the potty within 3 minutes or so. I am just not always watching.

Last Sunday Nov. 12th. Olivia, one our Sanfilippo children who was the 15th ever to have stem cell transplant for this disease went home with the Lord. Please keep this family in added prayer. She was so very young and fought so hard. Olivia

II Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
Phil 4:7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Jesus Christ.



These are pictures of Jesse at the Horse show a few weeks back!
No, the Bear is NOT REAL! LOL! But he sure looks like he is. Many of the horses were even afraid of it.


Many of the Hunter Syndrome kids have started a new ERT treatment that was approved in August to help them with the physical problems of MPS. It will not be a cure, but it should give them a better quality of life. There can be some side effects for some of these kids that are rough on their system. I know of several children so far that are seeing wonderful results in just 3 – 4 weeks of treatments. We also know of a couple that are having reactions that are not good. So please keep these kids in prayer as they go about this new treatment for them.


(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."


That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will! We are so blessed as a family here. God does look out for us every day! Praise be to God for all that he does and has done!!

Hugs and many blessings to you all!
Patty and Jesse

---

Wednesday, November 1, 2006 6:56 PM CST

*** PICTURES From our Fall gathering at the Hardy home in New Jersey are posted. Photos There are pictures from our summer gathering at the Hall’s home from August also posted. Jesse and Julie at Hershey Park Sunday are posted in the web shots album linked at the bottom of this page too. His play equipment pictures are posted! Other pictures include his new bedroom last winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page!

Good day to all our friends and visitors,
I’m sorry it’s taken me so long to update, but I have been extremely busy having fun actually. (and working a little too) Many of you know we went to an MPS family gathering in New Jersey a few weeks back. We had a wonderful time meeting new families and seeing many families we already knew. I want to shout out a BIG THANKS to Jackie for hosting the event. She and her family did a wonderful job!
As I posted above, there are pictures in the photo link below.

Jack and I took a weeks vacation from working last week while Jesse was in school. We spent lots of time together for the week. The weather was not the best for boating and fishing. So we went to the movies, had lunches out together, and went other places during the day together in general. Two of the days we did go out on the water anyway even though conditions were not the best. We just had to do it in spite of weather. As I write this on Tuesday the 31st, we are seriously thinking about going today. The weather is unusually warm. Calling for 74 degrees by late afternoon. Then back to the 50’s by tomorrow. So I think we will drop all work plans and do it!! (Yes we have dropped all plans.. we are going out today!)

Jesse will have his third Craniosacral Massage tonight. We have not seen any major changes with this treatment yet. We do believe his hearing is improving. We have heard a few words here and there. At school they have reported him saying several words. “Boom”, and “No” especially, LOL! At home I hear “Ma”, and “Me” more frequently as well as “buddy”. We also notice that he is more sensitive to high frequency sounds than previously.

Jesse also had a wonderful time the one weekend at a Horse show we went to. It was one of my students’ first time out showing, so we went out to support her. She did get Reserve Champion for the day in her division. While there, Jesse got to watch and pet lots of horses. He likes the timed events best when the horses are running fast. He also had fun playing with a Bear that was there for the obstacle course. I will post a picture of that also. (the Bear is not real, but he sure looks real)



Many of the Hunter Syndrome kids have started a new ERT treatment that was approved in August to help them with the physical problems of MPS. It will not be a cure, but it should give them a better quality of life. There can be some side effects for some of these kids that are rough on their system. I know of several children so far that are seeing wonderful results in just 3 – 4 weeks of treatments. We also know of a couple that are having reactions that are not good. So please keep these kids in prayer as they go about this new treatment for them.


(John 3:16,17,18)
”For God so loved the world that he gave his one and only Son, that whosoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world; but to save the world through him. Whoever believes in him is not condemned; but whoever does not believe stands condemned already, because he has not believed in the name of God’s one and only Son."

That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will! We are so blessed as a family here. God does look out for us every day! Praise be to God for all that he does and has done!!

Hugs and many blessings to you all!
Patty and Jesse

---

Monday, October 9, 2006 10:06 AM CDT

*** PICTURES AT OUR INFORMAL FAMILY GATHERING AT THE HALL'S HOME SATURDAY AUG.12th. Also Jesse and Julie at Hershey Park Sunday are now posted in the web shots album linked at the bottom of this page too. His play equipment pictures are posted! (check link below) Other pictures include his new bedroom last winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page!

Good day to all our friends and visitors,
Well we decided on doing the Football theme this week! The Ravens have been winning so much lately we couldn’t resist! Mostly by luck, but hopefully they will get more together as the season progresses. Jesse loves football, so we dedicated the site to his favorite player MATT STOVER!! We feel he is football’s number one kicker, and definitely a great support and friend to the kids at JHU in the Children’s Center there!!

THE RAVENS PLAY MONDAY NIGHT FOOTBALL TONIGHT ON TV IN DENVER!!! It’s going to be a cold night!!
Hopefully their winning streak will continue!!!
**UPDATE!! Well we now have the winning streak monkey off our back.. the Ravens lost to Denver on Monday night, so now the pressure is off!!!

Jesse has recovered totally from the nasty virus he had. It took 6 days to break the fever and by day 8 he was 100 percent! PRAISE GOD!! He is loving school and the fall weather walks and bike rides. We are gearing up for the Fall season field trips with school also.

Jesse also had his second Craniosacral Massage this past week. (it would have been his 3rd, but he was sick when he was scheduled for the second one) Anyway he was very good while she worked on him. While working on his ear canals, the therapist and I were talking about kids shows and stuff, when Jesse said "Elmo" out of nowhere! We both were very surprised. He has not said it since, or anything else for that matter other than his usual, "Ma, "No","Be", and "Ba" sounds. He also makes lot of other noises too. But we both heard him say very clearly "Elmo". He has not said Elmo in at least 2 years, before now. So this is proving interesting to say the least.

Unfortunately we didn’t make the trip to PA for the walk/run. My overnight place to stay fell through for unknown reasons?? The hotels were $149.00 a night, and we just couldn’t spare that kind of money right now for a room just to sleep in from 6pm – 6am the next morning. Linda did inform me that they had 400 people and raised about $30,000.00 for the MPS Society! WAY TO GO!!! So Jesse and I stayed home while the guys went out on the boat Sunday! It was a relaxing but somewhat boring day, compared to what I planned for the day.

I am happy that on Sat. October 21, we will be going to New Jersey to another MPS family gathering at a friend’s house. I will at least get to be around friends with kids like my own for the day! That is always a good time! There should be 5 or 6 MPS families there. It will be a Fall Festival theme, and we will do some pumpkin carving with the kids too!!



Jack and I are both taking a week off work and taking the boat out fishing everyday while Jesse is in school. We decided to do this the week of Oct 22nd. It will be nice to spend some relaxing time with Jack everyday. Just the two of us!!! I am so looking forward to that since we did not get to take a vacation this year.

Many of the Hunter Syndrome kids are starting a new ERT treatment that was approved in August to help them with the physical problems of MPS. It will not be a cure, but it should give them a better quality of life. There can be some side effects for some of these kids that are rough on their system. I know of several children so far that are seeing wonderful results in just 3 – 4 weeks of treatments. We also know of a couple that are having reactions that are not good. So please keep these kids in prayer as they go about this new treatment for them.


Philippians 4:6-7 KJV)
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will!

Hugs and many blessings to you all!
Patty and Jesse

---

Sunday, October 1, 2006 2:32 PM CDT

*** UPDATED 8-15-06 PICTURES AT OUR INFORMAL FAMILY GATHERING AT THE HALL'S HOME SATURDAY AUG.12th. Also Jesse and Julie at Hershey Park Sunday are now posted in the web shots album linked at the bottom of this page too. His play equipment pictures are posted! (check link below) Other pictures include his new bedroom this past winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page!

Good day to all our friends and visitors,
A lot has been happening these past two weeks, and I have not had much time to sit and redo the website. I apologize for that. It seems the Fall season gets quite busy once school starts.

The first thing that happened was Jesse got sick on Friday night, Sept 15th with a virus of some kind that caused high fevers and upper airway congestion. JESSE HAS NOT BEEN SICK IN OVER THREE YEARS!! I know he got this from a bus aide who was coughing all over the kids that entire week on the bus. A few other kids ended up sick too. I finally said something to her on the Wednesday before he got sick. I told she should at least be covering her mouth and or wearing a mask if she was going to work on a special bus with kids who already have compromised immune systems. Little did I know she was being fired anyway that same day. I am sorry for her not having a job, but she really needed to think about what she was doing anyway. She was not the brightest star in the sky when it came to working on a bus with special needs children.

Anyway Jesse missed a full week of school with this virus. AT time his fever was spiking abut 104 through the fever meds. I don’t think he has ever missed 5 whole days of school in one school year, in the past 4 years of school. (other than vacations to conferences.. but never due to sickness) With a few preventive measures we were able to keep the airways from getting bad, and Jesse was able to return to school a week later on Monday the 25th at 100apacity.

As far as my husband and son’s band trip NY. Well I didn’t get to go due to Jesse coming down ill two days before. So the band went and so did my daughter – in law, and few of the bands fans rode the train up also. I heard NY itself was nice a day, but the night at the club was another story. Most of the bands that played were young kids playing heavy death metal rock… loud and hard. Now I can handle loud and hard music if it is straight up rock…but only for about hour, then I’m done with it. But death metal, I have no love for it at all. The sound company running the sound for the bands was happy to hear Union-jack. He said their music was so much better to listen to. His comment was, “Usually when I’m done here each night, I feel like going home and killing my wife and kids. Tonight after listening to your music, I don’t feel that way”. Jack was so happy to hear that!! We surely don’t want people getting angry after hearing our music. Even though Union-jack writes rock music, the lyrics are Christian based rock about real life experiences. Needless to say we were not in the right kind of club for what Union-jack played. So they will not be going any further with the “Battle of the Bands” with this company. THANKS AGAIN FOR ALL OUR FRIENDS WHO VOTED AND HELPED US GET AS FAR AS WE DID!!


October 7th, Jesse and I are taking a short trip up to PA, to spend an evening with Kathleen and Liam and then go to the Walk/Run that Linda Shine does in honor of Katie for MPS research in finding a cure. I am looking forward to meeting some new MPS families. It will be a nice day and half away. It will be sort of a mini vacation from the normal hussle of life.
Then on Sat. October 21, we will be going to New Jersey to another MPS family gathering at a friend’s house. There should 5 or 6 MPS families there. It will be a Fall Festival theme, and we will do some pumpkin carving with the kids too!!

Also sometime this month, Jack and I are both taking a week off work and taking the boat out fishing everyday while Jesse is in school. It will be nice to spend some relaxing time with Jack everyday. Just the two of us!!! I am so looking forward to that since we did not get to take a vacation this year.


Many of the Hunter Syndrome kids are starting a new ERT treatment that was approved in August to help them with the physical problems of MPS. It will not be a cure, but it should give them a better quality of life. There can be some side effects on some of these kids that are rough on their system. I know of several children so far that are seeing wonderful results in just 3 – 4 weeks of treatments. We also know of a couple that are having reactions they are not good. So please keep these kids in prayer as they go about this new treatment for them


Philippians 4:6-7 KJV)
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will!

Hugs and many blessings to you all!
Patty and Jesse

---

Tuesday, September 12, 2006 7:17 AM CDT

*** UPDATED 8-15-06 PICTURES AT OUR INFORMAL FAMILY GATHERING AT THE HALL'S HOME SATURDAY AUG.12th. Also Jesse and Julie at Hershey Park Sunday are now posted in the web shots album linked at the bottom of this page too. His play equipment pictures are posted! (check link below) Other pictures include his new bedroom this past winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page!

Good day to all our friends and visitors,
Thanks for stopping by to visit! It’s been kind of quiet lately, nothing wild or extragavant to report. I think that is good actually. (well maybe some wild things)

School started the last week of August and is going very well for Jesse. He is happy to have Ms. Thomas (his old 1-1 aide) in his room as a Teaching Assistant to help train his new 1-1 aide, Rachel.

We have decided that the first weekend in October we are taking a short trip up to PA (Jesse and I) to spend an evening with Kathleen and Liam and then go to the Walk/Run that Linda Shine does in honor of Katie for MPS research in finding a cure. I am looking forward to meeting some new MPS families. It will be a nice day and half away. It will be sort of a mini vacation from the normal hussle of life.

Also new, is that many of the Hunter Syndrome kids are starting a new ERT treatment that was approved in August to help them with the physical problems of MPS. It will not be a cure, but it should give them a better quality of life. There can be some side effects on some of these kids that are rough on their system. So please keep these kids in prayer as they go about this new treatment for them.

Jesse had his first CranioSacral Massage Sept 5th. It went very well. He didn’t mind his head, lumbar and spinal area being worked on at all. Deb did a wonderful job preparing Jesse for these treatments with his other massages. He wasn’t thrilled about the frontal lobe area being worked on though. He tolerated that area little bit. As the therapist put it, this area will be a work in progress. Our goal with CranioSacral massage is to improve depth perception, fine motor skills, hearing and speech improvement. If we get more, that is fine, but these are our particular goals. Here is a link to CranioSacral Therapy
I found out recently that insurance will cover his massage therapies!! We will return for another on Sept 21st.

Update on the family: The boat has been getting plenty of use when the band is not playing. We have enjoyed fresh caught crabs on Labor Day weekend, and Fish at other times. Stephen and Jack and one of Jack’s best friends Rob go out the mostly. I am not one to rise at 4 am and get an MPS child ready to go fishing, LOL! In mid to late October Jack and I are both taking a week off and going out boating, fishing and dining for lunch while Jesse is at school for a few days. Then we’ll take Jesse out on that weekend. This will be more pleasure boating (which is more my style) than the serious fishing and crabbing.
Also on Labor weekend we had a huge family party (extended and close friends too) for my Father-in laws 80th birthday. It was an all day affair up until 9pm at night. Lots of kids and many people everywhere. Jesse had a very good time that day. But dummy me forgot to take the camera.

Also on Sunday the 17th my husband and son’s band Union-jack goes to New York to compete in “A Million Dollar Battle of the Bands”. This is round two for us, and there are 3 or 4 more rounds if we can place in the top 3 on Sunday night. We managed to make it past 5000 other bands via the internet to get this far. Our drawback will be the fan vote. With this being on a Sunday evening, it is hard to get fans up to NY and possibly missing work on a Monday. ( 4 hour drive each way) So we have to pray that other band’s fans will like us enough to vote for us. Fortunately voting is only 20 percent of the judging, the other 80s done by the judges. It will be nice to spend the day walking around Manhattan. That is where we are playing in NY. We are going up early so we can spend the day enjoying NY.


Philippians 4:6-7 KJV)
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will!

Hugs and many blessings to you all!
Patty and Jesse

---

Wednesday, August 30, 2006 3:13pm CDT

*** UPDATED 8-15-06 PICTURES AT OUR INFORMAL FAMILY GATHERING AT THE HALL'S HOME SATURDAY AUG.12th. Also Jesse and Julie at Hershey Park Sunday are now posted in the web shots album linked at the bottom of this page too. His play equipment pictures are posted! (check link below) Other pictures include his new bedroom this past winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page!

Good day to all our friends and visitors,
Our latest update this month has a lot going on. (All good things) Jesse's therapeutic massages are going very well. He's been getting one every week for these past three weeks.
We started with Connective Tissue and Neuromuscular massages. He did very well his first time in, we got a whole 50 minutes out of him!!! Yippee!! Our goal is to move on to Craniosacral massage by Fall. Here is a link to CranioSacral Therapy
I found out recently that insurance will cover his massage therapies!!

UPDATE 8-22-06.. Jesse had knots on both heel cords. One since he was 2 years old, the other he got about 5 years old. After 2 massages both knots are totally gone!! Jesse is lasting the whole hour now and loving it!! I must say his whole attitude is happier overall, even though he was already pretty happy!!

8-26-06 - We had our meeting at school to see if Jesse's IEP needs will be met! They have been for the past 3 years until this past year at ESY (Extended School Year/Summer School) So I did not let him attend the full ESY session because of it. Hopefully all will be back in place as this Fall season begins.

8-30-06 RESULTS OF SCHOOL MEETING!!! Jesse has new wonderful 1-1 who will be assisted by his former 1-1 of the past three years. She will be a Teachers Aide in the same class with Jesse this year. I was very pleased that they included his former 1-1 in this class to help train Jesse's new aide. (by law they didn't have to do that) So with that said.. School issue is resolved for now and hopefully for good this year... Jesse has attended 3 full days so far for the new season. He is testing the waters so to speak with his new 1-1. Ms Thomas (his previous 1-1 of 3 years)is having to straighten his little butt out, LOL! He knows right from wrong, but if you don't know him, and with him being non verbal for the most part, you would not know what he understands. He does understand quite a bit.. he just fools many people. This is why it is good that Ms. Thomas is still in his room. She can help train the new aide about his ways.

Jesse had his 6-month Echocardiogram the first part of August. All looks the same, no additional regression there. So we shall now move to annual visits instead of 6 months, unless we see changes that concern us.

We had a wonderful dentist visit on Monday August 13th!! We got there about 10 minutes early. The doc saw us right on time. He had 2 students assisting him. (this dentist we see, knows a good bit about MPS, that's why I go there) So we set up a game plan to look first in his mouth. He laid Jesse back, I held his hands, while the assistants watched a while and assisted Dr. Tinanoff with taking the notes and tools. He used the prop to keep his mouth open. Jesse fussed a little at first but not so bad. Okay, all teeth were looked at and prodded and soon on. Jesse was happy to get the thing out of his mouth. He proceeded to tell me that things weren't as bad as I thought. That he has NO CAVATIES STILL!!! The one tooth I was concerned about will push the other out, it is a little loose now and looks to be progressing on it's own okay. BUT the one towards the front will need to be pulled, so the other one can move in. So we discussed it briefly, and decided to give Jesse a local right there that day and pull the thing out!! He put the prop back his mouth to open it up, cleaned the bottom teeth a little and then gave Jesse the local in the gums all around the tooth we were pulling. I think Jesse would have been cussing if he knew how, but he was actually quite cooperative once the local was done. I held his arms, and one of the assistant students held his legs in case he decide to try and raise himself up off the seat. But he didn't try Thank God! The other student assisted the doc with tools and suction. In a matter of two minutes or less it was all out, and he packed it with gauze for a few minutes. We took the prop out of Jesse's mouth and let him sit up again, he gave us a few smacks and one or two strong vocal verbages of being mad, then he settled down and was laughing with us in a few short minutes. The doctor was quite surprised how forgiving Jesse was, and how well behaved he was.

He asked before we started about O2 levels and any meds Jesse was on. When I told him no meds only supplements, he asked what supplements? I started down the list. After about 6 things, he said.. "You must have a PHD in nutrition" I told him NO, and laughed a little, only an internet PHD from having to find things out, and a few specialty books I read. Anyway Jesse has been fine all day. We were in out of the office in one hour flat!!
You would never know he had a tooth today pulled by the way he is acting. He is quite normal and eating well!!

Wednesday the 16th we went for a general physical, just for insurance purposes. All went well there as expected.We get his next massage on Friday! Now if I could only find a way for insurance to pay for massages for me too, LOL!

If you still need access to Jesse’s Vitamin list, they are viewable on our journal history page. (anywhere it may show up in white, just hightlite with your mouse and you can read it!)

Philippians 4:6-7 KJV)
be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.



That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will!

Hugs and many blessings to you all!
Patty and Jesse

---

Thursday August 10, 2006, 5:50 pm CDT

*** UPDATED 7-24-06 PICTURES OF JESSE and Julie at Hershey Park Sunday are now posted in the webshots album linked at the bottom of this page. His play equipment pictures are posted! (check link below) Other pictures include his new bedroom this past winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page! Memorial Day Weekend at Williamsburg and Busch Gardens, "SPECIAL OLYMPICS" and "THE MARYLAND REGIONAL MPS EVENT and EXPO" ON THE WEBSHOTS LINK AT BOTTOM OF THIS PAGE IN THE LINKS SECTION

Good day to all our friends and visitors,
I just wanted to add a quick update. Jesse had his first therapuetic massage today. We are starting with Connective Tissue and NeuroMuscular massages. He did very well his first time in, We got a whole 50 minutes out of him!!! Yippe!! Our goal is to move on to Craniosacral massage by Fall. I will go into more detail at the end of next week. We are scheduled again on Friday August 18th for his second massage. But between now and then we have our 6 month Echocardiogram, a dental visit with x-ray. He has a third set of teeth coming in up top, and a general physical with his General Practioner. So when all these things are done, I will update again on the details. Until then, THANKS for stopping by to check on Jesse, and May God Bless you and your family!!

The week of July 23rd was quite a busy week. That Sunday we met the Hall family at Hershey Park. Julie and Jesse are almost the same age and both Sanfilippo A. We had a wonderful time. The weather was great! A little hot in the sun, but it was wonderful in the shady areas. Hershey has lots of shade too. The Halls went from there to KY for the MPS conference. Wednesday Jennifer was in town, Ben’s mom from Ben’s Dream Research Foundation for Sanfilippo Jesse and I spent most of the day with her going shopping and having lunch out. We also spent some time at one of her friend’s house as well as mine! It was a wonderful day being out with another mom who understands Sanfilippo. Check out their website above and see how you can help with research and awareness.

I decided at the last minute to go to the conference in KY for one day only, just Saturday basically. I booked the hotel, rental car and flights on Tuesday. Jesse and I were to fly in on Friday evening and leave to come home Sunday. I was looking forward to meeting some new families as well as visiting with old friends there too. Well Jack took Jesse and I to the airport on Friday in the midst of storms. Long story short, the flight got delayed 3 times, by 5:30pm. So I decided that maybe this was a sign I should stay home. So we got our luggage back from the cargo area, went to the BWI taxi stand and took a taxi van back home. We got hone about 7pm. Jesse was cracking up the driver up all the way home, Jesse was laughing most of the way. I was slightly disappointed, but Jesse was a real trooper the whole time at the airport. We actually made a fun time of it in spite of the delays. So we chalked Friday up as a 4 hour field trip to BWI airport. LOL! This week goes back to a normal schedule, with the exception that I did pull Jesse from Summer School. They did not abide with the 1-1 aide for summer school. We have a formal request in for the IEP to be held before the season starts in Sept. Hopefully they will go back to being the reliable and wonderful school they have been in the past. If not, I am afraid I will have to fight them with the MD Disabilities Law Center working by my side. They already have agreed to help free of charge if I need them. Hopefully it doesn’t come to that.

I am leaving the vitamin list up one more go around on the main page here. Next time, they will be in the journal history files. We go in mid August for Jesse’s 6 month Echocardiogram. We’ll keep you posted on the outcome of that also.

Thanks again for checking in on Jesse and I! May your week ahead be a blessed one!

Philippians 4:6-7 KJV)
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.




Jesse has been on many supplements, all added gradually since Spring of 2003. We started looking at diet long before that due to diarrhea. To this day we keep to the regiment of diet restrictions (no dairy, wheat or gluten, including pre-breaded and pre-prepared freezer case food, and rarely fast food, unless salad or plain burger with no bun) Jesse gets many grilled, broiled or baked meats and the same with veggies. We use vinegar (good for digestion) and olive oil and many spices for seasonings and flavor, He gets 2-3 servings of low citrus or no citrus fruits a day, and everyday he eats raw carrots sticks and raisins, and free choice dry cereal (Rice or Corn Chex, or another cereal I buy that is oat)

Here is a list of supplements every day!!! Many have asked what he takes, so I thought I would post it here for a while!

Jesse’s Vitamin regiment

All of this goes in the oatmeal in the AM. Jesse has been on Amino Acids, Lecithin and B’s and flaxseed oil, since March of 2003. The others were added gradually through out 2003 from Spring to Fall unless otherwise noted.

2 heaping tsps. Soy / Whey Protein Mix, (Amino Acids, GNC brand)) These are important for everything in the body, from brain to muscles.
2 heaping tsp. Soy Lecithin granules (GNC brand)
2 tsp of flaxseed oil with lingnans, (Barleans brand)
1 tsp. of liquid Cod liver (Nordic Naturals)
1 capsule of ultra soy isoflavone which is his genistein pill of 131mg, (started June 17, 2005) (study in Poland for breaking GAGs in MPS kids especially Sanfilippo) (I am using a brand from Life Extensions, which is fermented)
500 mg of Vitamin C with 100 mg biflavonoids, (Twin Labs brand)
800 mcg. of folinic acid, by Health Products Dist. (I have switched to that on April 5th 2005 instead of folic acid to see it makes a difference. (As of May 24, 2006 no difference good or bad)
400 IU of Vitamin E mixed tocepheryls. (NOW brand)
50 mg across the board of Vitamin B-Complex (Solgar brand)
1000 mcg. of Sublingual Methyl B-12, (Jarrow brand)
1000mg of Glucosamine Hydrochloride. (NOW brand)
1 capsule of Advanced Proantacyanidin (antioxidant capsule by Solgar)
Then he drinks
1 ounce of Xango which is a Mangosteen juice. Uses as an antioxidant, anti-allergy, and anti-inflammatory. This was added in February of 2004. This has about 90liminated his allergy problems. We use occasional Nasonex, Saline water or X- clear during peak allergy season along with this juice every day.

After school each day or about 4:30pm –5pm each day if school is not in session, he gets a Spiru-tein shake – It also has more amino acids, bee pollen, Bromeline, and Spirulina in it, along with every vitamin and mineral a person needs. (added in Fall of 2004)

Then in the evening at dinner time he gets another full capsule of the genistein pill, then also a capsule of Nordic Natural DHA. (Fish Oil again)
and another 1 –2 ounces of Xango juice. We also have added another supplement caclled Vinpocetine. This not only helps with cognitive function, but studies have shown it to help in improving hearing loss from neurosensoral damage. We shall see in by fall if his improves even more than last year. It can enhance the effects of the other cognitive boosting supplements he already gets. The only side effects shown have been lowered BP and or upset stomach when taken on an empty stomach. It's been about 3 weeks and no sign of any of these things. So far so good.
At bedtime, Jesse most nights will only require 1 – 1 ½ mg of melatonin. I have found Source Naturals sublingual brand to the most effective on the lowest dose. Their spray and liquid do not work nearly as well as their sublingual, and neither do about 4 other brands I have tried in the past. Some nights he does not even need the melatonin now.

I recently started Jesse on some new supplements over the past month. One is called Alpha GPC. You can read about here. Alph GPC This supplement should help with mental focus and stimulation of cognitive function, improved balanced and coordination, improved lipotrophic functions in the liver, and more strength. I added this in the beginning of May. Then mid May I added Lipoic Acid.to his diet. This should help his heart and many other functions as well. You can read about it here. Lipioc Acid This bit of info really intrigued me. “Alpha Lipoic Acid contributes to invigorating mental and physical energy and a reduction in muscle fatigue. Dr. Lester Packer, a leading researcher in the area of antioxidants and a professor of molecular and cell biology at the University of California at Berkeley says

"Alpha-Lipoic acid could have far-reaching consequences in the search for prevention and therapy of chronic degenerative diseases such as diabetes and cardiovascular disease" .... "and because it’s the only antioxidant that can easily get into the brain, it could be useful in preventing damage from a stroke". This past week I added Acetyl-L-Carnitine. Acetyl-L-Carnitine Acetyl-l-carnitine is a molecule that occurs naturally in the brain, liver, and kidney. Natural levels of Acetyl-l-carnitine diminish as we age. Studies demonstrate that ALC treatment is efficacious in alleviating symptoms, particularly pain, and improving nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy. Improve both spatial and temporal memory, and reduce the amount of oxidative damage to RNA in the brain's hippocampus, an area important in memory.Acetyl-l-carnitine is widely used as an energy supplement. This seems like a very important factor to regaining any brain functions that we might possibly gain again with Jesse. So far I have not seen any adverse side effects from any of these supplements. These should take about 4 - 6 months to see any really big changes if I see them. I have noticed that Jesse can get out of bed quickly now and is not stiff when getting up. That is the only physical change I see. I also do believe I am seeing some cognitive changes (for the better) even though mild. I will watch these and see if it is real or my imagination as some doctors would say, LOL! (* It's been almost 2 months now on all the newly added supplements. There is defintie cognitive associated improvement. Jesse is really interested in everything you talk about now. He is babbling 2-3 times as much as he used too with more emotion, including disappointment or disatisfaction at times.(this a good thing in our eyes, because he was either happy or just there kind of blank with no opinion being shown) Something we rarely saw was a full array of emotions these past 21/2 years. He is also playing more with toys in the ways they are meant to be.
Again my goals now are to try and improve some speech and cognitive functions. Something that doesn’t generally happen with MPS kids once they regress.


That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Summer seems to have arrived here, and the days are mostly HOT!! Try and stay comfortable and enjoy the season!

Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will!

Hugs and many blessings to you all!
Patty and Jesse

---

Saturday, July 15, 2006 2:13 PM CDT

*** UPDATED 7-24-06 PICTURES OF JESSE and Julie at Hershey Park Sunday are now posted in the webshots album linked at the bottom of this page. His play equipment pictures are posted! (check link below) Other pictures include his new bedroom this past winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page! Memorial Day Weekend at Williamsburg and Busch Gardens, "SPECIAL OLYMPICS" and "THE MARYLAND REGIONAL MPS EVENT and EXPO" ON THE WEBSHOTS LINK AT BOTTOM OF THIS PAGE IN THE LINKS SECTION

Good day to all our friends and visitors,
These past two weeks has had their ups and downs. Mostly good things. Jesse has been feeling fine, no sickness or hard times per say. He has been trying to chat with us escessively. He had a lot to say the other day when he came home from school too. It was almost like he had major stuff to tell dad and I. Then I find out later he had no 1-1 aide in his class and she has been with him 3 years. So maybe he was telling us some major stuff. (I will say more about the school situation below) I have been working hard for friend 5 days this past week while she was on vacation, so my work here at home has gotten behind to say the least. The heat and humidity has been dreadful, so by the time I get home from working outside ½ the day, I don’t care to do anything else but relax in the A/C once home. I did get the results of all Jesse’s lab work ups and they came back fine. It’s been a full year on genistein now and many other supplements for many years. Here are the results for those interested.

We obtained labs including a CBC which showed a white count of 9270,
a hemoglobin of 14.2, and hematocrit of 42. The indices were normal and
the platelet count was 275,000.

T4 was 1.3 with a TSH of 1.76, so
entirely in the normal range as well.

The CMP showed a sodium of 138, potassium
4, chloride 104, BUN 18, glucose 75, creatinine 0.5, calcium 9.5, total
protein 7.5, albumin 4.8, total bilirubin 0.3, ALT 58, AST 41, alkaline
phosphatase 280, and CO2 27.

Plasma amino acid levels showed some mild
non-specific elevations of Threonine, Asparagine, Glutamine, Lysine,
Histidine, and Arginine. All of the elevations are trivial. All other Amino Acid levels were on in the middle ranges of normal!!!

Quantitative zinc level was 68 which is in the middle of the normal
range."

School has disappointed me greatly this summer. I have not had school problems for the past three years! This summer they moved his 1 – 1, and he has no aide for summer school. This is a breach in his IEP, and I am not happy about this. I am meeting with the school principal Monday. Jesse may not be finishing summer school this year if I cannot resolve this issue the way I want it. His 1-1 is still in the school doing a teaching assist.job, just not in his room. :-) She has requested to be in his room and to still be with him, but they are not honoring her request. Jesse thinks of her as his second mom. I can definitely see a difference in his attitude going to school lately also. I am sure he feels abandoned now when he is at school without her. He’s had different teachers every year, but not his aide. She has been his steady in this school for the past three years, and a big reason for his success there. I don’t understand why they want to even try and upset something that is working so well! They make no sense at all sometimes. My voice shall be heard on Monday!!

Jack’s band is very busy this fall, so I doubt I will see much of him on the weekends. (weeknights too for that matter since they practice 2x a week and load up one night for the shows) I cannot keep up the nightlife schedule and function the next day on 3 –4 hours sleep. I think my age is catching up to me, and also I have been used to sleeping 7 – 9 hours a night for the past several years. Jack gets to sleep late, so he is fine. Me …. I still have to take care of Jesse in the mornings. No rest for the weary they say!! I now wonder if the boat will get much use with the band playing so much???? Who knows… as long he is working and can pay the bills, why should I worry? I was just getting used to my hubby being around more, and being more functional as a family, and now that seems to put on hold again with the music schedule. I guess it will be just me and Jesse again for the most part. We will do fine, I am sure, but it is dad who will miss out in the end!!

Next Sunday the 23rd, Jesse and I will spend the day at Hershey Park with the Hall family. Jack will be too tired after playing out both Friday and Saturday night that weekend. Then also the same week, I will get to spend the day with another good friend whose son has Sanfilippo also. Jen is coming to town to visit a good friend who lives fairly close to me. So we shall a spend a day together, I am looking forward to next week!

Philippians 4:6-7 KJV)
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

Mid June we had our annual genetics follow-up. We have been keeping a close eye on Jesse especially since the start of genistein. It is now one full ago that we started this new experimental treatment. I am happy to say we have not seen any regression this past year at all. We have seen only good things and mild improvements. Our geneticist commented upon seeing Jesse, and I quote “I think he looks better than last year”. That was so nice to hear, because I feel same way and so do many other people that see him often, including the school staff. His liver and spleen are normal!!! No enlargements at all! Every muscle and finger and joint are flexible, no contractures of any kind. Jesse has not been sick in almost 3 years now, other than a stuffy nose or sinus drip from allergies during peak season. But even then, we haven’t needed doctor assistance. He’s been sleeping wonderfully all night long for about 3 years now. I do believe I am getting spoiled. The geneticist did a complete metabolic work up- and thyroid check (we do these yearly) especially since genistein. I also asked for a complete Amino Acid profile work up and protein levels to be checked, as well Zinc and Tyrosine levels. Jesse gets a fair amount of all of these and I want to be sure nothing is too high. Our geneticist was only happy to do these for us! The results are listed above and are wonderful and all in normal ranges. We will not change a thing at this time!! In August we go back for another Echocardiogram with the cardiologists. We monitor him every 6 months since we chose not to any meds for the heart. He had bad reactions to the one med we tried, so I chose not to try another at this time. If his heart gets worse, (so far it hasn’t) then I may have to make a decision to try something else. Hopefully the newly added L- Carnitine will help the heart also. That should show up by our winter appt in January 2007. He will have been on it long enough by then.

Jesse has been on many supplements, all added gradually since Spring of 2003. We started looking at diet long before that due to diarrhea. To this day we keep to the regiment of diet restrictions (no dairy, wheat or gluten, including pre-breaded and pre-prepared freezer case food, and rarely fast food, unless salad or plain burger with no bun) Jesse gets many grilled, broiled or baked meats and the same with veggies. We use vinegar (good for digestion) and olive oil and many spices for seasonings and flavor, He gets 2-3 servings of low citrus or no citrus fruits a day, and everyday he eats raw carrots sticks and raisins, and free choice dry cereal (rice or corn Chex, or another cereal I buy that is oat)

Here is a list of supplements every day!!! Many have asked what he takes, so I thought I would post it here for a while!

Jesse’s Vitamin regiment

All of this goes in the oatmeal in the AM. Jesse has been on Amino Acids, Lecithin and B’s and flaxseed oil, since March of 2003. The others were added gradually through out 2003 from Spring to Fall unless otherwise noted.

2 heaping tsps. Soy / Whey Protein Mix, (Amino Acids, GNC brand)) These are important for everything in the body, from brain to muscles.
2 heaping tsp. Soy Lecithin granules (GNC brand)
2 tsp of flaxseed oil with lingnans, (Barleans brand)
1 tsp. of liquid Cod liver (Nordic Naturals)
1 capsule of ultra soy isoflavone which is his genistein pill of 131mg, (started June 17, 2005) (study in Poland for breaking GAGs in MPS kids especially Sanfilippo) (I am using a brand from Life Extensions, which is fermented)
500 mg of Vitamin C with 100 mg biflavonoids, (Twin Labs brand)
800 mcg. of folinic acid, by Health Products Dist. (I have switched to that on April 5th 2005 instead of folic acid to see it makes a difference. (As of May 24, 2006 no difference good or bad)
400 IU of Vitamin E mixed tocepheryls. (NOW brand)
50 mg across the board of Vitamin B-Complex (Solgar brand)
1000 mcg. of Sublingual Methyl B-12, (Jarrow brand)
1000mg of Glucosamine Hydrochloride. (NOW brand)
1 capsule of Advanced Proantacyanidin (antioxidant capsule by Solgar)
Then he drinks
1 ounce of Xango which is a Mangosteen juice. Uses as an antioxidant, anti-allergy, and anti-inflammatory. This was added in February of 2004. This has about 90liminated his allergy problems. We use occasional Nasonex, Saline water or X- clear during peak allergy season along with this juice every day.

After school each day or about 4:30pm –5pm each day if school is not in session, he gets a Spiru-tein shake – It also has more amino acids, bee pollen, Bromeline, and Spirulina in it, along with every vitamin and mineral a person needs. (added in Fall of 2004)

Then in the evening at dinner time he gets another full capsule of the genistein pill, then also a capsule of Nordic Natural DHA. (Fish Oil again)
and another 1 –2 ounces of Xango juice. We also have added another supplement caclled Vinpocetine. This not only helps with cognitive function, but studies have shown it to help in improving hearing loss from neurosensoral damage. We shall see in by fall if his improves even more than last year. It can enhance the effects of the other cognitive boosting supplements he already gets. The only side effects shown have been lowered BP and or upset stomach when taken on an empty stomach. It's been about 3 weeks and no sign of any of these things. So far so good.
At bedtime, Jesse most nights will only require 1 – 1 ½ mg of melatonin. I have found Source Naturals sublingual brand to the most effective on the lowest dose. Their spray and liquid do not work nearly as well as their sublingual, and neither do about 4 other brands I have tried in the past. Some nights he does not even need the melatonin now.

I recently started Jesse on some new supplements over the past month. One is called Alpha GPC. You can read about here. Alph GPC This supplement should help with mental focus and stimulation of cognitive function, improved balanced and coordination, improved lipotrophic functions in the liver, and more strength. I added this in the beginning of May. Then mid May I added Lipoic Acid.to his diet. This should help his heart and many other functions as well. You can read about it here. Lipioc Acid This bit of info really intrigued me. “Alpha Lipoic Acid contributes to invigorating mental and physical energy and a reduction in muscle fatigue. Dr. Lester Packer, a leading researcher in the area of antioxidants and a professor of molecular and cell biology at the University of California at Berkeley says

"Alpha-Lipoic acid could have far-reaching consequences in the search for prevention and therapy of chronic degenerative diseases such as diabetes and cardiovascular disease" .... "and because it’s the only antioxidant that can easily get into the brain, it could be useful in preventing damage from a stroke". This past week I added Acetyl-L-Carnitine. Acetyl-L-Carnitine Acetyl-l-carnitine is a molecule that occurs naturally in the brain, liver, and kidney. Natural levels of Acetyl-l-carnitine diminish as we age. Studies demonstrate that ALC treatment is efficacious in alleviating symptoms, particularly pain, and improving nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy. Improve both spatial and temporal memory, and reduce the amount of oxidative damage to RNA in the brain's hippocampus, an area important in memory.Acetyl-l-carnitine is widely used as an energy supplement. This seems like a very important factor to regaining any brain functions that we might possibly gain again with Jesse. So far I have not seen any adverse side effects from any of these supplements. These should take about 4 - 6 months to see any really big changes if I see them. I have noticed that Jesse can get out of bed quickly now and is not stiff when getting up. That is the only physical change I see. I also do believe I am seeing some cognitive changes (for the better) even though mild. I will watch these and see if it is real or my imagination as some doctors would say, LOL! (* It's been almost 2 months now on all the newly added supplements. There is defintie cognitive associated improvement. Jesse is really interested in everything you talk about now. He is babbling 2-3 times as much as he used too with more emotion, including disappointment or disatisfaction at times.(this a good thing in our eyes, because he was either happy or just there kind of blank with no opinion being shown) Something we rarely saw was a full array of emotions these past 21/2 years. He is also playing more with toys in the ways they are meant to be.
Again my goals now are to try and improve some speech and cognitive functions. Something that doesn’t generally happen with MPS kids once they regress.

P.S. We did have Dr. Keene do Pelvic x-rays to checkout hips etc on May 12, 2006. (due to his position when he rides his new bike, he throws his left hip and knee outward) His x- rays look wonderful he said and that he has no signs of deterioration, dislocations or anything else for that matter. All his pelvic region and bones look good. He said he is going to do quite a bit of growing yet also. So we have rigged up a strap to keep his leg from swinging outward in order to prevent any damage to his hip or knee, from the position he rides in.

That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Summer seems to have arrived here, and the days are mostly HOT!! Try and stay comfortable and enjoy the season!

Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will!

Hugs and many blessings to you all!
Patty and Jesse

---

Sunday, July 2, 2006 6:55 AM CDT

*** PICTURES OF JESSE and HIS NEW PLAY EQUIPMENT ARE POSTED! (check link below) Other pictures include his new bedroom this past winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page! Memorial Day Weekend at Williamsburg and Busch Gardens, "SPECIAL OLYMPICS" and "THE MARYLAND REGIONAL MPS EVENT and EXPO" ON THE WEBSHOTS LINK AT BOTTOM OF THIS PAGE IN THE LINKS SECTION

Good day to all our friends and visitors,
This has been a wonderful week, nothing adverse to report. Jesse goes back to school on Monday for 5 weeks, then has off again until just after Labor day. The guys went out on the boat Saturday and brought home some nice fish. So today (Sunday) we shall have fish for dinner. Basically we have been having good times daily. Jesse rides his bike every other day, we go walking the day in between. We swing in the glider daily, and play hand clapping games and singing songs. Yesterday we visited the mall for new shoes, and also the horse farm. Jesse loves watching the horses. He has been sleeping 10 hours a night while he has been off school. He's becoming a real sleeper in these puberty years. LOL! He has actully been sleeping well the past several years, but I think it loves it even more since he has his own bedroom this past year. All of Jesse medical and vitmain updates are listed below! Enjoy your holiday weekend!

Mid June we had our annual genetics follow-up. We have been keeping a close eye on Jesse especially since the start of genistein. It is now one full ago that we started this new experimental treatment. I am happy to say we have not seen any regression this past year at all. We have seen only good things and mild improvements. Our geneticist commented upon seeing Jesse, and I quote “I think he looks better than last year”. That was so nice to hear, because I feel same way and so do many other people that see him often, including the school staff. His liver and spleen are normal!!! No enlargements at all! Every muscle and finger and joint are flexible, no contractures of any kind. Jesse has not been sick in almost 3 years now, other than a stuffy nose or sinus drip from allergies during peak season. But even then, we haven’t needed doctor assistance. He’s been sleeping wonderfully all night long for about 3 years now. I do believe I am getting spoiled. The geneticist is doing a complete metabolic work up- and thyroid check (we do these yearly) especially since genistein. I also asked for a complete Amino Acid profile work up and protein levels to be checked, as well Zinc and Tyrosine levels. Jesse gets a fair amount of all of these and I want to be sure nothing is too high. Our geneticist was only happy to do these for us! In August we go back for another Echocardiogram with the cardiologists. We monitor him every 6 months since we chose not to any meds for the heart. He had bad reactions to the one med we tried, so I chose not to try another at this time. If his heart gets worse, (so far it hasn’t) then I may have to make a decision to try something else. Hopefully the newly added L- Carnitine will help the heart also. That should show up by our winter appt in January 2007. He will have been on it long enough by then.

Jesse has been on many supplements, all added gradually since Spring of 2003. We started looking at diet long before that due to diarrhea. To this day we keep to the regiment of diet restrictions (no dairy, wheat or gluten, including pre-breaded and pre-prepared freezer case food, and rarely fast food, unless salad or plain burger with no bun) Jesse gets many grilled, broiled or baked meats and the same with veggies.We use vinegar (good for digestion) and olive oil and many spices for seasonings and flavor, He gets 2-3 servings of low citrus or no citrus fruits a day, and everyday he eats raw carrots sticks and raisins, and free choice dry cereal (rice or corn Chex, or another cereal I buy that is oat)

Here is a list of supplements every day!!! Many have asked what he takes, so I thought I would post it here for a while!

Jesse’s Vitamin regiment

All of this goes in the oatmeal in the AM. Jesse has been on Amino Acids, Lecithin and B’s and flaxseed oil, since March of 2003. The others were added gradually through out 2003 from Spring to Fall unless otherwise noted.

2 heaping tsps. Soy / Whey Protein Mix, (Amino Acids, GNC brand)) These are important for everything in the body, from brain to muscles.
2 heaping tsp. Soy Lecithin granules (GNC brand)
2 tsp of flaxseed oil with lingnans, (Barleans brand)
1 tsp. of liquid Cod liver (Nordic Naturals)
1 capsule of ultra soy isoflavone which is his genistein pill of 131mg, (started June 17, 2005) (study in Poland for breaking GAGs in MPS kids especially Sanfilippo) (I am using a brand from Life Extensions, which is fermented)
500 mg of Vitamin C with 100 mg biflavonoids, (Twin Labs brand)
800 mcg. of folinic acid, by Health Products Dist. (I have switched to that on April 5th 2005 instead of folic acid to see it makes a difference. (As of May 24, 2006 no difference good or bad)
400 IU of Vitamin E mixed tocepheryls. (NOW brand)
50 mg across the board of Vitamin B-Complex (Solgar brand)
1000 mcg. of Sublingual Methyl B-12, (Jarrow brand)
1000mg of Glucosamine Hydrochloride. (NOW brand)
1 capsule of Advanced Proantacyanidin (antioxidant capsule by Solgar)
Then he drinks
1 ounce of Xango which is a Mangosteen juice. Uses as an antioxidant, anti-allergy, and anti-inflammatory. This was added in February of 2004. This has about 90liminated his allergy problems. We use occasional Nasonex, Saline water or X- clear during peak allergy season along with this juice every day.

After school each day or about 4:30pm –5pm each day if school is not in session, he gets a Spiru-tein shake – It also has more amino acids, bee pollen, Bromeline, and Spirulina in it, along with every vitamin and mineral a person needs. (added in Fall of 2004)

Then in the evening at dinner time he gets another full capsule of the genistein pill, then also a capsule of Nordic Natural DHA. (Fish Oil again)
and another 1 –2 ounces of Xango juice.
At bedtime Jesse on most nights will 1 – 1 ½ mg of melatonin. I have found Source Naturals sublingual brand to the most effective on the lowest dose. Their spray and liquid do not work nearly as well as their sublingual, and neither do about 4 other brands I have tried in the past. Some night he does not even need the melatonin now.

I recently started Jesse on some new supplements over the past month. One is called Alpha GPC. You can read about here. Alph GPC This supplement should help with mental focus and stimulation of cognitive function, improved balanced and coordination, improved lipotrophic functions in the liver, and more strength. I added this in the beginning of May. Then mid May I added Lipoic Acid.to his diet. This should help his heart and many other functions as well. You can read about it here. Lipioc Acid This bit of info really intrigued me. “Alpha Lipoic Acid contributes to invigorating mental and physical energy and a reduction in muscle fatigue. Dr. Lester Packer, a leading researcher in the area of antioxidants and a professor of molecular and cell biology at the University of California at Berkeley says

"Alpha-Lipoic acid could have far-reaching consequences in the search for prevention and therapy of chronic degenerative diseases such as diabetes and cardiovascular disease" .... "and because it’s the only antioxidant that can easily get into the brain, it could be useful in preventing damage from a stroke". This past week I added Acetyl-L-Carnitine. Acetyl-L-Carnitine Acetyl-l-carnitine is a molecule that occurs naturally in the brain, liver, and kidney. Natural levels of Acetyl-l-carnitine diminish as we age. Studies demonstrate that ALC treatment is efficacious in alleviating symptoms, particularly pain, and improving nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy. Improve both spatial and temporal memory, and reduce the amount of oxidative damage to RNA in the brain's hippocampus, an area important in memory.Acetyl-l-carnitine is widely used as an energy supplement. This seems like a very important factor to regaining any brain functions that we might possibly gain again with Jesse. So far I have not seen any adverse side effects from any of these supplements. These should take about 4 - 6 months to see any really big changes if I see them. I have noticed that Jesse can get out of bed quickly now and is not stiff when getting up. That is the only physical change I see. I also do believe I am seeing some cognitive changes (for the better) even though mild. I will watch these and see if it is real or my imagination as some doctors would say, LOL! I should know if these changes are real in a few weeks if they still continue, then I will report them as well to you and Jesse’s doctors. Please pray that we see some more positive results over the next few months!!Again my goals now are to try and improve some speech and cognitive functions. Something that doesn’t generally happen with MPS kids once they regress.

P.S. We did have Dr. Keene do Pelvic x-rays to checkout hips etc on May 12, 2006. (due to his position when he rides his new bike, he throws his left hip and knee outward) His x- rays look wonderful he said and that he has no signs of deterioration, dislocations or anything else for that matter. All his pelvic region and bones look good. He said he is going to do quite a bit of growing yet also. So we have rigged up a strap to keep his leg from swinging outward in order to prevent any damage to his hip or knee, from the position he rides in.

That’s about it for now!! May God Bless You and Keep you in his Wonderful Care!! Summer seems to have arrived here, and the days are mostly HOT!! Try and stay comfortable and enjoy the season!

Thanks for stopping by and checking on Jesse! Stop in and sign our guest book and let us know you were here!

Also, please keep all our MPS families in prayer! So many have children who are not doing well, and others have recently lost children due to this horrible disease. So again please keep these families in your prayers if you will!

Hugs and many blessings to you all!
Patty and Jesse

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Thursday, June 15, 2006 6:08 PM CDT

*** PICTURES OF JESSE and HIS NEW PLAY EQUIPMENT ARE POSTED! (check link below) Other pictures include his new bedroom this past winter, the Arizona MPS conference, Stephen’s Wedding, and many others are viewable from the Taormino Family photo link at the bottom of the page! Memorial Day Weekend at Williamsburg and Busch Gardens, "SPECIAL OLYMPICS" and "THE MARYLAND REGIONAL MPS EVENT and EXPO" ON THE WEBSHOTS LINK AT BOTTOM OF THIS PAGE IN THE LINKS SECTION